New Mom ..... New Cancer

Clean and Clear

2012-02-27T20:54:00.000-08:00

Got my results back from my scans and labs. All clear! I expected as much when I didn't get a call with any kind of info right away. For the most part, no news is always good news. I also scheduled my port removal. It will be so nice to have this thing out of my chest. It will have been in for almost exactly a year when it is taken out. Hard to believe.
Although I didn't quite get to all of my questions at this appointment (I never do. Either I forget, or things are rushed, and in this instance, we ended up spending what I think is a bit too much time on my grieving of Saoirse.), I did ask about when my next scheduled scan would be and about getting pregnant. My next scheduled CT should be in 6 months, which is August. My doctor says that, obviously, they wouldn't scan me if I was pregnant. She also noted that most feel it's best to wait for a year once finishing treatment to make sure that the body has time to recover from the harshness. Of course, I feel like I still have some recovering to do. I am feeling great, but I have not gotten back into exercising as regularly as I would like, and I would love to finish off my full detox and make sure that I have made my body safe for carrying a normal, healthy pregnancy. But my favorite part of our conversation today, the part that made me feel like I was no longer a "cancer patient," was when my doctor said, "Don't let a protocol dictate your family life." It made me feel like a person who had some control over her own life again. I haven't felt that way in a year. It's nice to be human again.

New Lease on LIFE!

2012-02-24T14:39:00.000-08:00

We have been vegan for 6 days now, and so far so good. I have found TONS of amazing recipes and, so far, they have all be delicious. I even made chocolate cake today! I am loving the way I feel. I've been sleeping better at night (with the exception of the random weird dreams), I have more energy during the day, I want to get up and do things, and I am feeling happier. I can already feel such a difference. For once, I am starting to feel more "normal."

Seriously - if you haven't watched "Forks Over Knives," check it out. It is worth a look. There is some serious science in there.

Vegan is NOT a four letter word

2012-02-18T13:53:00.000-08:00

So, in an effort to change our lives for the good, and improve our health, we have been reading and researching about how our diets in this country affect our overall health. After lots of research, and too much time spent on the internet, we have decided to make some major changes in our home and our lives.

Change #1:
NO MORE CHEMICALS! We got rid of all of our traditional household cleaners, pesticides, and personal products. We will be replacing them with all natural oil soaps, and cleaners made from basic ingredients like vinegar, salt, lemon, and backing soda.

Change #2:
ALL ORGANIC! Pesticides have a very strong link with Neuroblastoma in particular. They can also carry compounds that can have a profound impact on overall health. Avoiding them (and GM products) as much as we can is our goal here.

Change #3:
WHOLE FOOD/PLANT BASED EATING! For a very full description on this concept, and the science behind it, see the documentary "Forks Over Knives."(ps: it's now on Netflix!) We are trying to prevent cancer in particular, but the benefit of having healthier hearts, and better overall health makes this lifestyle worth the little bit of extra effort at the grocery store.

Change #4:
EAT LOCAL! This one will take a little time for us to adopt. We have signed up for a CSA this year through the Farm Direct Coop. We are very excited to get some amazing local, organic produce over the majority of the year. We will be growing our own garden too, and will be putting a lot of effort into gathering enough produce over the season to hopefully can and freeze for the winter months. I think the most difficult thing to track down will be local beans and nuts, but we will be looking into that over the coming months, and hopefully work something out. We are still loving our local, organic produce being delivered to us each week by The Fruit Guys, and it's so great to know we have that to rely on.

Some major life changes, but all for the better. It will be tough at first, but so far we are determined to make important changes like this to help our family grow strong and healthy in the future!

All the little siblings...

2012-02-10T12:00:00.000-08:00

Sometimes it seems like every one of the moms I met while pregnant and a new mom are having second kids. I see photos of the little ones, brand new, and all scrunched up. They are super cute. Then I see their toddler siblings, looking in awe; smiling, laughing, poking, squeezing, trying to hold them. I think about how we so looked forward to Saoirse having a sibling. She would have been a great big sister. I can just see her coming up and wanting to help - feed the baby, bring the baby a blanket, put on the little socks, wrap him/her up, put him/her down for a nap. I can imagine she would just look out for him/her and be sure that he/she was ok. She always wanted to help, and she was always mindful of what was around and what we needed. Somehow she knew that she was supposed to be kind and helpful to others. She was quite the little sharer, and always liked to make sure everyone she played with got to share her toys.
I always wanted my kids to be a little farther apart in age (Mike wanted one right after the other it seems). I was determined to have one at least somewhat consistent on the potty before I brought out more diapers. I'm sure we would have compromised on that at some point. When I got sick, we were resolute in the fact that I would have to wait at least two years before getting pregnant again. That way I would be out of the highest risk zone for relapse, and we hopefully wouldn't find ourselves having to make a nasty decision. When Saoirse got sick, we knew that we didn't want to put our energy anywhere else but towards her. We knew that if we could get through treatment without distractions, and could focus all our energy on her, she would be better for it. We were focused, and it didn't bother me that we had to wait to have our next baby.
But now, I am slapped in the face with the realization that not only do we still have to wait for my health, but we will not be bringing a new baby home to his/her sibling. Our next baby will be a first. He/she will be the oldest living sibling, and will therefore have those responsibilities. He/she will not be our first baby, but will be raised as such in the sense that he/she will get all the attention, all the toys, his/her own room. That baby will not benefit from knowing Saoirse. Knowing the strength and goodness that she was every day. Knowing how hard she fought, yet how happy she was. Knowing just how amazing it can be to live, even though your body is destroying you from the inside. He/she will not have her to look up to each day, to model him/herself after, to follow around and learn by example. That child, that hasn't even been put into practical idealism, will never know the most beautiful person I have ever met. That child doesn't exist yet, and I already feel bad for him/her - for what he/she will miss. How will we tell him/her about Saoirse? How will we be able to convey what she meant and what she stands for? How can we even fathom to share what we know of her with this new baby? I can't imagine that we can do her justice.
So now, we wait. Wait for the all clear from my doctors. Wait for my body to be healthy and free of chemicals and toxins. Wait for our 24/7 job back. There is one thing for sure; the new baby's middle name will be "Saoirse."

curls and swirls

2012-02-05T12:54:00.000-08:00

So my hair is officially trying to be curly. Here's the problem. Only half my hair fell out, meaning that the half that didn't fall out is still the way it was. So now when I wake up in the morning, my hair is flipping nuts! Its everywhere! Up, down, sideways. Hopefully it will figure itself out sometime. I'm trying to get it to grow out, so we'll see how it goes. I think it will be in that awkward phase for a while, but luckily I look good in a hat.

I've decided I'm going to get a journal to write in. I just read a book called "Bed Rest" that I picked up in a thrift store. Its written diary style, and I liked the way it read. I'm not planning on turning it into a book, but I liked that she wrote down everything she did and can really remember it all. I also think it might put some perspective on the day to day that we are living right now. I still feel like we are kind of in a time warp, and I haven't figured out how to get out of it. I think writing what happens each day as it goes might be a way to really see the days, and hopefully they won't keep just disappearing into thin air. I think I'll find a nice handmade leather bound one that has nice blank pages. Then I can scribble and draw if I want too. I'm on a mission - I'll try and find one in the next couple days.

In other news, I'm a master fire builder. I will share more later, but I am totally proud of myself right now for this. Just figured I'd gloat a bit.

Sick again...

2012-01-30T13:06:00.000-08:00

I hate colds. I also hate that I pick up every little cold I run in to because I have absolutely no defense to them anymore. I will have to work on that. Put that on the to do list with the detox and organic living.

On another note, I really fell like I have gotten some energy back. I still have moments (especially with this stupid cold) that I run out, but I have been doing a lot of walking recently, and I haven't been so tired. Exercise does a body good, right? Now to focusing on more fruits and veggies.....

Timeline

2012-01-25T05:23:00.000-08:00

One year ago we were given the news we thought would be the worst we could hear - I was diagnosed with Stage 3 Hodgkin's Lymphoma. I had Cancer. At age 26. We were devastated. This was our life until 2011.

Timeline of an American Dream

2005: Fall in Love

2006: Graduate College

2007: Get Engaged

2008: Get Married

2009: Buy a House

2010: Have a Baby

....Almost

2011: Fight Cancer with your Baby - Win your Battle! Loose your Baby

2012: ..............................

I hope that 2011 is a glitch in the timeline, and that 2012 will bring nothing but positive milestones back to our life. I'll take one a year. Two seems to be too much to handle.

Organic Living

2012-01-20T16:28:00.000-08:00

I think I'm going to start writing about our forays into organic living. I have to figure out if I can post a second blog on this page. Or I might just make a second page and link to it. So far our pantry is empty. I'll have to take a picture of the emptiness and post it on my first post. I can't wait to share some of the stuff I've found out about.

Oh Wait....Yup Me Too...

2012-01-18T20:55:00.000-08:00

With our life lately, it's been sort of a whirl wind. Changed treatment plans, set backs, relapse, new plan, progression, fear, loss, grief... Our life was 24/7 Saoirse, and really it still is. She took all of our focus and attention and care for 8 long months, and we were lucky to be able to focus on her so completely.

I think I forgot that I had my own six month battle that I went through. Mine was so comparatively easy, that I keep forgetting that it happened. I feel good, my hair is coming back, I've (sadly) gained back all the weight I had lost, and now with Saoirse gone, and no more baby to take care of, I almost feel as if the past year and a half never happened. (ok, so this is a whole other can of worms that needs its own post... I'll get to that later.) Time is kind of stopped, and the world around me just sort of exists.

But then, all of a sudden, something will remind me. Usually its a mirror, as I still have a giantly obvious port in the middle of my chest. Or Mike will bring up the fact that he still worries about me. My first reaction is always "why," and then I say, "well, duh." Did I forget about those 6 months of chemo already? Was it so benign that it just doesn't even matter? Then I give myself a little mental slap and say "um hello! What is wrong with you? Did you forget or something?" I'm not sure how you forget that you had cancer. It seems like something that wouldn't get overshadowed by something else, unless that something else was pretty life changing - oh wait, I guess that was 2011 for the Fitzgeralds.

I feel like I was rudely reminded of my ill health status last week when I all of a sudden became very sick. Now don't freak out, not hospital runs or even doctors visits, "very sick" in my relative book means a stomach bug. I know what you're thinking... "What? she had cancer, what does a stomach bug have to do with anything?" But that's just it. I always have had an INSANE immune system. Mike, who picks up any bug and germ that walks by, hardly ever passed things on to me, and if he did, with much less severity. The last time I threw up before last Thursday (yes, this is a real stat, including through a pregnancy and chemo) was in 2005, when myself, Mike and a whole table of people from a gala event ended up with either food poisoning or the flu from the same source. Now colds, sure! I've had my fair share of those, maybe one or two a year, and a couple bouts with bronchitis due to complications from asthma, but considering that I had been working in a retail environment for quite some time, and before that in a school environment, I'm pretty sure I was exposed to many more germs than that. So, to my surprise last Thursday night, after having a lovely afternoon and evening with some friends, my body boycotted and emptied itself all at once over the course of about three hours. (To my rescue was a little Ativan that was so nicely in my medicine cabinet left over from my apparently forgotten treatment.) At first I thought "food poisoning!" as I literally had just eaten dinner at a restaurant. However, we had all shared dishes, and everyone had eaten the same things, and no one else was ill at all. Then I read some Facebook posts from my lovely mommy friends who I had partied with on Wednesday. Two babies, one mommy, and one daddy, all with the same bug! So apparently, while I was running around, snuggling up and playing with all my adorable little "baby fixers," I picked up a horrible baby belly bug which hit me like a ton of bricks in less than 24 hours. (I'm pretty sure it stewed in these other babies much longer than that.) Yup, no immune system. Forgot about that one. I had been protected in the hospital with the baby, if not by the fact that we were in an almost sterile environment, at least by the fact that Purell was everywhere. But now, no hospital, and no undying urge to sanitize every five minutes. Whoops! forgot about me and my negative immune system. Good thing I didn't encounter anyone with chicken pox. (I'm not sure how long it takes for my old immunities from vaccines, etc. to re-activate.)

So now I'm focusing on detoxing my system, and rebuilding my immune system. I think I will search out a naturopathic doctor to work with. I have done some very interesting reading, and I'm looking forward to what, I think, will be an amazing feeling of health once I achieve all the steps. We have already cleared out the pantry of all non-oranic foods (we donated them to the Ronald McDonald house in Boston, which makes me feel a little guilty as I am removing them so I don't eat them as a cancer patient, but at least they will be greatly appreciated). Next will be the fridge and freezer (ahhhh! it's scary in there!). We have been looking around at the local grocery stores and are finding where to get organic groceries easily and cheaply (not usually paired together, but cheap is winning over ease I think). We also signed up for a local farm share co-op, and will be looking forward to our organic produce and herbs coming over the spring, summer and fall! With all this organic food, we will be focusing on a more plant based diet (although I'm pretty sure we won't be cutting out animal products completely, we will be greatly cutting back). We trashed ALL the harsh chemicals in the house and I found a book called "Green Cleaning" by Briggs and Head that tells you how to clean your entire house and keep your house and yard maintained using 6 common and non toxic ingredients (vinegar, baking soda, lemon, salt, tea tree oil, and borax - ok, this one not so "non toxic" but non chemical none the less). We are now using natural soaps - Dr. Bronner's all natural - and my skin and hair have never felt better! They make laundry soap too, which I have, but haven't done a load yet. We got an under sink water filter for Christmas, and I'm considering having a whole house filter installed (we will be having our water tested). The final step will be some heavy metal detoxing for me. Chemotherapy puts horrible amounts of chemicals and metals into your system, bogging down your body and making it unable to function properly and detox itself. I've been juicing, which is a good start, and I've been reading up on some things that I can eat that will help to remove metals out of my system. But having had so many toxins pumped in, I'm looking to do some serious chelation, and I'll work with a doctor (probably naturopathic) on that one so that it's done safely.

So, kind of extreme, but we have done some startling research and hope that this is a road that will keep us away from the "C" word for the rest of our lives. One big driving force is wanting to have more kids. We want to make sure that I am healthy and stable and strong enough to have a healthy and normal pregnancy. We also want to make sure that I don't pass any residuals on to a new baby in the womb, and heavy metals are a big concern there. Plus, a fresh start is a great way to cleanse and move forward, and work on positive energy in a new, and hopefully enjoyable year ahead.

So here's to new beginnings, new horizons, and hopefully not having so many reminders that I am (technically) still a cancer patient.

Oh, the Places You'll Go!

2012-01-14T16:35:00.000-08:00

by Dr. Seuss

Congratulations!

Today is your day.

You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go.

You'll look up and down streets. Look 'em over with care.
About some you will say, "I don't choose to go there."
With your head full of brains and your shoes full of feet,
you're too smart to go down any not-so-good street.

And you may not find any
you'll want to go down.
In that case, of course,
you'll head straight out of town.

It's opener there
in the wide open air.

Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And then things start to happen,
don't worry. Don't stew.
Just go right along.
You'll start happening too.

OH!
THE PLACES YOU'LL GO!
You'll be on your way up!
You'll be seeing great sights!
You'll join the high fliers
who soar to high heights.
You won't lag behind, because you'll have the speed.
You'll pass the whole gang and you'll soon take the lead.
Wherever you fly, you'll be best of the best.
Wherever you go, you will top all the rest.

Except when you don't.
Because, sometimes, you won't.
I'm sorry to say so
but, sadly, it's true
that Bang-ups
and Hang-ups
can happen to you.
You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.
You'll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you'll be in a Slump.
And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself
is not easily done.
You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?
And IF you go in, should you turn left or right...
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it's not, I'm afraid you will find,
for a mind-maker-upper to make up his mind.
You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles cross weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...
...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.
Waiting for the fish to bite
or waiting for the wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

NO!
That's not for you!
Somehow you'll escape
all that waiting and staying
You'll find the bright places
where Boom Bands are playing.
With banner flip-flapping,
once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of a guy!
Oh, the places you'll go! There is fun to be done!
There are points to be scored. There are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all.
Fame! You'll be as famous as famous can be,
with the whole wide world watching you win on TV.

Except when they don't
Because, sometimes they won't.
I'm afraid that some times
you'll play lonely games too.
Games you can't win
'cause you'll play against you.

All Alone!
Whether you like it or not,
Alone will be something
you'll be quite a lot.
And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.
But on you will go
though the weather be foul.
On you will go
though your enemies prowl.
On you will go
though the Hakken-Kraks howl.
Onward up many
a frightening creek,
though your arms may get sore
and your sneakers may leak.
On and on you will hike,
And I know you'll hike far
and face up to your problems
whatever they are.
You'll get mixed up, of course,
as you already know.
You'll get mixed up
with many strange birds as you go.
So be sure when you step.
Step with care and great tact
and remember that Life's
a Great Balancing Act.
Just never foget to be dexterous and deft.
And never mix up your right foot with your left.
And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!
So...
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
You're off the Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!

*** The above text was copyrighted in 1990 .

Cleansing Breaths

2012-01-07T16:10:00.000-08:00

As we move into the new year, I feel the need to make changes that will improve the health of ourselves and our home.

First on the docket: we threw out ALL our cleaning chemicals. I found a book that tells how to clean using 4 ingredients: Vinegar, Lemon, Baking Soda, and Salt. I also found a recipe to make fabric refresher using Vodka. I'm looking forward to not having the caustic chemicals anywhere in the house.

Second up: eating organic. This is proving to be a more complicated decision. I refuse to go full fledged into Whole Foods land, as I feel like their price point is purposefully high, and I want to do "organic on a budget." I am working on hitting up the local grocery stores to see what kind of options they offer in organic, and how hard it is to find what they have. We are getting organic fruit delivered (which I will most likely switch to fruit and veggies), and I think produce is the hardest to find variety in, so hopefully that will keep the frustration down. Market Basket (the local bargain store where we usually shop), has organic, but you have to search for it. Its not separated at all, so you really have to search your sections and target what's there. This is complicated and time consuming at the beginning, but I think as time goes on, and we have targeted our brands of choice, we might be able to make it work. Today we hit up Stop and Shop. They have some stuff separated. They have a "natural and organic" food section. This seemed good, but I think that they put all the name brands there. The nice thing about stop and shop is that they have a store organic brand. I hate the fact that normal things are more expensive there, but the organic store brand seems to not bee too far off. They even have free range meats. So, the search and figure out continues, and the next stop will be Shaws. We have a Trader Joe's too, so I'll probably have to go in there and see what they have. Baby steps.

Third on the list: Detox. This may seem extreme, but in reality, chemo puts tons of toxins in your system, and heavy metals, and I want to try and clear out my system to help it function in a healthier way. I also think it will help with energy and nutritional absorption, now that I'm going to be focusing on nutrition.

So anyway, those are the projects in the works. Cleansing home, body, and hopefully spirit. That, will take the most effort, but in the end will be the most rewarding.

Stuck in the Past

2012-01-04T07:40:00.000-08:00

A new start for a new year. This was my hope. I believed that we would be together, cancer free and moving up toward our new life as a family. So now I am stuck. I can't get past the days when she was declared NED by her doctors at children's. I can't get past the ill advice that we received from them about treating her in the last month, and I can't get past the miscommunication that happened throughout her treatment after her surgery.
What's the worst is the guilt I feel for not being more clear minded when we were trying to switch protocols. Two things stick out in my mind that I feel would have kept her alive. The first was when she was having her bone marrow biopsy at children's after her induction therapy was done. Mike asked if they could do the four site biopsy in preparation for going to sloan. They advised no, but said we could if we really wanted to. I said no. If I had said yes, we could have possibly avoided the second biopsy, or could have known earlier and asked better questions when we were at sloan. The second is when we found out about her second biopsy from Sloan. I still felt that antibody would have been the key to clearing her bone marrow for good, and when I asked about the protocol for refractory/residual disease, I was told "we like to make sure it's resistant." If I had simply asked "is she qualified as of now," we would have gotten a different answer (as she was technically qualified), and we could have had a choice to do or not do the chemo.
What makes me the most mad and frustrated is that doctors make you beg, plead, and argue with them to get more information than "well, that's not the normal thing to do." They are the ones we look to to for answers, for suggestions, for new ideas. We bring them information that we have found to find out if our child qualifies, and rather than giving us the straight answer, they bog it down with "well everyone else does this." I thought peer pressure was supposed to be done after high school! She was our child; we had to make decisions that were right for her, not because everyone else was doing it. We were in the right place, and making the right decisions, and her doctors were pushing against us forcing us into treatment we didn't want and didn't feel was right for her. How can they do that to families?!
My baby should have been here now. She should have gotten the treatment we wanted her to get. She should have been accepted the first time we asked. This is traumatic for a parent to go through. No one wants to hear bad news, and doctors should not be making a traumatized parent repeat themselves multiple times in order to do as they wish. We were bullied by her doctors into doing treatment that we didn't want, and weren't informed that she was qualified for the treatment we did want. Their "agenda" caused my baby her life. And now, my biggest fear, is that they are still doing it to other families.

Christmas wishing

2011-12-27T08:11:00.000-08:00

Sometimes I feel like its all a dream. Like I'll wake up and it will have just been a horrible nightmare that I won't have to remember for more than a day. I keep wishing that real life was like a Lifetime movie, where you are shown the consequences of a choice and then go back and can make a change. I feel like if we had known just a sliver of what we know now about her disease just a month earlier than we did, we could have changed something.
I know I shouldn't get stuck in the what ifs, but its so hard. If she had never been clear, if we had never heard NED, I think it wouldn't be as heart wrenching. I feel like we missed our chance; like we had our open door and we let it shut in front of us. This is the feeling that haunts me. This is what made the holidays so hard.
I can't let this happen to another family. I have to start getting this information together to help other families. We need to get parent advocates in every hospital for every disease - someone who has been there and can help sort through the information right at the beginning. Someone who can help by sharing the information that is out there and point that family in a direction that is right for them and their child. Doctors need to be more forthcoming in the information that they share with patients, and not pussyfoot around issues that are "hard" to talk about. They also need to be willing to work with other doctors and hospitals to design care plans that are more individualized for their patients, and less "cookie cutter." Some diseases, like Hodgkin's, have a tendency to do the same thing most of the time, but Neuroblastoma is not one of those diseases. If we don't share individual experiences with others, there is no way that each doctor will see the many mutations and courses that this disease can take. Rather than competing for patients, consortiums and oncology groups need to work with each other to tailor treatments for the patients they see, using all the resources available, not just the ones at their hospital.
Here is my example. Recently, I spoke to a woman from Connecticut who also lost her little girl to this horrible disease at the beginning of December. I was glad to talk to her, as I felt like I needed to share my feelings with someone going through the same things. Sadly, her story is almost identical to Saoirse's, and towards the end, they experienced very similar, inaccurate "symptom management" from their doctors. While Saoirse's doctors were telling us that her disease was not looking like anything they had seen Neuroblastoma do before, there was a little girl in CT who had just lost her battle in the exact same course of events just weeks before. Now, you may say that there is no way that this could have been put out to the world of doctors in time to save Saoirse, or to even help in her treatment in any way, but I challenge the fact in the advent of social media and the internet. If particularly difficult and abnormal cases were presented on something like a Facebook group for NB doctors, there could have been a connection made as soon as a post was read.
There might be a benefit to the fact that only 600 - 700 kids a year are diagnosed with this disease - social networking would not take all the time of a doctor or advocate to sift through the individual situations. And if parents gave the early symptoms that they experienced with their child, pediatricians could more easily find and learn what to look for in their patients and do the early testing (yes, there is a URINE test for NB!) that might help to diagnose these kids earlier and give them a much better chance at survival.
With all the advancements in cancer treatment over the last 40 years, it is sad that more and more kids seem to be diagnosed each year. We should find out more about these kids and how they are developing these diseases, and work to find the answer to why they get a disease and other kids don't. I'm not happy with the "we don't know the cause" answer so readily given out by doctors. There has to be something, and with all the technology out there today, I think we should be able to figure out what in our environment is making these kids develop this evil inside of them. I, for one, am going to be throwing away our cleaning chemicals, and starting to eat organic and less processed.
That's my rant for the day. I suppose I have found a direction for some of my frustrations, and now i'll have a place to direct my efforts.

Ashes, Ashes, We All Fall Down

2011-12-21T18:29:00.000-08:00

The past week has been rough. After 18 months of 24/7 baby care, to wake up on my own, without having to get up when the baby wanted, is a strange feeling. I spent so long wanting and waiting to be a mom. I felt like it was my calling, my destiny, my dream job! Even with all the though days and the stresses, the sleepless nights and the tears, I knew it was what I was supposed to do. All I had to do was look into her eyes, and I knew that I was doing a good job. Now I just feel lost. I lost my job, my purpose, my motivation. I feel like I failed - not as a mom, but as an "employee." My job was to care for and protect her; give her all that she needed, and help her be a good person. But I couldn't keep up with the evil that was inside her.
I feel like there were so many mistakes made since the end of her induction chemo. When we started informing ourselves of our other options, we were so overwhelmed. It was hard to focus in on the next thing to do. We thought we were ok, that we would be able to take a deep breath and have time to make an educated decision. If we had only known then what we know after doing so much research. I think this is the most upsetting. If we had started informing ourselves just a little earlier, started researching the options and the treatments available just one cycle before, we may have been able to make a decision that could have changed her course of treatment completely. I feel so responsible for not pushing harder and faster and staying up nights reading at the beginning. I know that there is no way of knowing if it would have made any difference, and that her disease was so aggressive that it may have changed nothing, but I can't get past that felling.
We are told to trust doctors, that they know what they are doing. We are told that there is a standard treatment, and that's what you do. Everything is immediate, and nothing is optional. I have found that this is not true in the world of cancer. There are "standard treatments," but they are not the only option. I wish that we had been told that there were other places out there that did other things to treat this disease. Especially at the very beginning a little direction would have been so appreciated. If we had known to look farther than our own backyard then, we may have chosen different treatment, or we may not have; it may have changed everything, or nothing; but at least we would have felt like we had made a more informed decision.
I am a true believer that everything happens for a reason. I know that someday, we will look back and say "that's why she went through what she did, to get us here." Nothing happens by chance; decisions that are made have a course. And, although I feel that I have a lot of luck in my life, I know that, in time, everything leads up to something bigger.
But right now I'm feeling purposeless. I don't have a baby to feed or diapers to change; no doctors appointments or treatments to schedule. I don't have to plan around nap and bed times; I don't have to pack up a diaper bag and food to leave the house. I can pick up a purse and keys and go out at 9pm, leaving only the dog at home. Its a strange feeling. It feels as if I've gone back in time to before Saoirse came into the world, before I was pregnant, but I have the knowledge of the past 18 months haunting me. I had my dream, my baby girl; so strong, so independent, so happy, and it was all taken away too soon. Now its waiting. Waiting for answers, waiting for the next project, waiting for that aha moment when everything lines up again. I hate waiting. I feel myself longing to see friends with babies so I can play with them. Watching the kids at the mall is joy and torture all at the same time. I saw some women arguing in the parking lot over how one of them parked their car (it was crazy, I'm surprised there weren't punches being thrown) and all I wanted to do was walk over and tell them to appreciate that they still had their children and grandchildren with them this Christmas. There is such a hole in my heart.
And so many other moms are having their next kid. Granted popping out another one is not the answer to our problems, but it would have been nice to have the option. Because of the treatments that I've been through, I have to wait at least two years from diagnosis to think about getting pregnant. It's more of a precaution than anything else. If I were to relapse while pregnant, it would be enormously tough to decide what to do. There is always the risk, especially since I had pregnancy onset Hodgkin's, but after the two year mark, my oncologist says it will be less of a risk. Back to waiting.
Time to reboot. To give ourselves a break from the "real" world, and focus on us for a change. Then we will take on the world. Show everyone that Saoirse meant something, and that she will change the way the world sees childhood cancer. Maybe I'll become a parent advocate and help other parents sort through the wash of information at the time of diagnosis. Hmmmm.....that might be a good place to start.

Free at last

2011-12-17T05:13:00.000-08:00

Saoirse Craig Fitzgerald lost he battle with Neuroblastoma on Monday morning, December 13, 2011. She fought for almost 8, long months, fighting back harder and more vigorously each time she had a setback. In the end, her little body couldn't take the strain, and she was too tired to keep working so hard.

For now, I will hold back, as I don't feel ready to discuss her final days. But I will say that, as hard as she fought and as much as she wanted to keep going, she knew that she was too tired and she just wanted to sleep.

We are holding a memorial service to celebrate her bright life, and invite you all to join us in celebrating her courage and spirit. Today, Saturday December 17th, we will gather at Cuffe-McGinn funeral home at 157 Maple Street in Lynn, MA at 5 pm. Please celebrate her bright personality by wearing bright colors and miss matched socks. We will be sharing her love of life and her infectious laughter, and remembering her courage.

For more information please visit www.cuffemcginn.com

I was never a runner...

2011-12-08T21:41:00.000-08:00

It's been a long time since I have posted. Some of it is time, but some of it is that I haven't had the heart to write. This has been a time of ups and downs, wins and losses, giggles and tears. We are riding a roller coaster and while the ups are so exciting, the downs can make you sick to your stomach.

Saoirse handled radiation like a champ. She finished it out, and everyone could see the major improvement in her head and eye tumors. She was eating and playing, even though she was sleepy. We finally felt like we were making some headway. She was visibly getting better, and we were glad to start to see our little girl come back to us.
Then we had a turn. She went into clinic and her electrolytes were all off. Her Sodium was low, her potassium was low and she was constipated. We were back in. This was rough because Mikes parents were in town, and I felt horrible that they were going to miss so many days with her. They gave her IV boluses and she started to perk up. She ate, pooped, played, pooped, and ate some more. Her levels went up, and they took her off of her hydration and she was truly Saoirse for six glorious hours! We had our baby back! She was running, and giggling and playing and laughing out loud, and talking and interacting. It was amazing and i was so excited to see her like that. I spent practically the whole time upset at the doctors and nurses and didn't enjoy it as much as I should have. It was short lived.
After her nap, she was miserable again. They checked her labs and her sodium had dropped. They waited it out a bit longer to see if she would rebound, but she stopped eating, stopped playing, stopped pooping, and it was back to lying on the floor and force feeding. With a later lab check, her sodium had dropped, and they put her back on fluid and started to work on a new plan.
Admittedly this was the worst night for me. I was frustrated, upset, angry, sad, defeated... the list could go on. She is so fragile, and I just want her to feel better. I am sick of the hospital stays and the unexpected changes. The unknown is so hard to deal with, and right now, that's all we have. There is no plan, its wait and see. I'm sick of waiting, and "seeing" never seems to pan out to anything good. I felt like I wanted to give up, to stop torturing her with the treatments and the hospital stays, and the poking and prodding. But she didn't deserve that either. I talked to the doctor, and she explained the plan, and I felt much better about how they were going to handle her treatment. She came home with us the next day, on a new plan, and I was hopeful that she would start to perk up in a couple days. We had a few glimpses of her playful side, and she seemed to maybe be turning around. But it didn't last.
She was having constipation issues, and we tried and tried to reduce her bloating. By Monday, she seemed so full of gas, that we thought she might have a true obstruction. We were worried that it would be toxic if she didn't move it quickly. We called and asked to see a gastroenterologist, and we were sent for an ultrasound at the peabody children's location. They saw that her liver was enlarged, and that one of her veins was narrowed and causing her to retain fluid. They said they didn't see any masses, but that it was concerning that her liver was so large. We were called in for a CT the next morning, and lab work in the afternoon.
More hurry up and wait. We were frustrated that we had to initiate the scans and that the doctors hadn't expressed any concern for her large belly on Monday when we were in clinic all day. If its not one thing its another, and we are just tired of all the back and forth and waiting for catastrophic events to happen in order to starting looking at her more closely. The CT showed the enlarged liver, but again no obvious tumors. Still no answers. We went for an additional ultrasound to see if there was any evidence of a clot anywhere that would be restricting the blood flow through her liver. They didn't find one. Still, no answers. Her condition was obviously precarious, and she needed to be watched. We were admitted.
There was a lot going on, and we were feeling the crunch. We were nervous that with the week coming to an end, and a lot of things not available over the weekend, we were going to miss the opportunity to get a leg up on what was going on. There were two possibilities - one is that the neuroblastoma is throughout her liver and that the cells have caused it to become enlarged, and the second is VOD (veno-occlusive disease) which is a side effect of chemo therapy. The only completely conclusive test would be a liver biopsy, but the doctors were not sure that she would be stable enough for one to be done. We had to go to bed that night knowing that we would not know answers right away. This was hard, but we knew that they were working on a plan, and that the plan would be complicated and involve a lot of new and different doctors.
All day today we didn't have many answers. We asked a lot of questions, answered the doctors questions, had a lot of examinations, and started to try and piece things together. They gave her some lasics to try and release some of the fluid from her legs and belly (she is up in weight over 5 lbs), and they gave her some red blood cells because she was quite low. Over the course of the day we met some of the different doctors, and waited to hear if she would be able to have a biopsy or not. They got her MIBG scan scheduled, and managed to get the marker to the hospital (which is a feat with twelve hours notice!), and she was injected for a scan on Friday. We were so glad to be able to have this happen. We really think that it will help to see what is going on sooner and safer than some of the other options. She will also have planning done for radiation so that if it is NB, she will be able to start radiation immediately. We are encouraged by the response in her skull from the last round of radiation, and we are hoping that if it turns out to be NB, it will respond as well to radiation. More waiting, but at least we have a plan.

Right now we feel like we are chasing her disease. We can't seem to get ahead of it, and it is taking turns that the doctors don't even know how to look for. It seems to not want to follow any of the things that are readily available, and it seems like it's got a head up on what we are going to throw at it (maybe its a little bit psychic). We are hoping that soon we can finally get ahead of it, and kick it down once and for all. Right now, we just need to figure out what's going on in her enormous liver.

Thankful

2011-11-24T20:37:00.000-08:00

Happy Thanksgiving!

Although this has been a year of why and what ifs, heartaches and uncertainties, we have a lot to be thankful for.

For me, I am first and foremost thankful for my little girl and her amazing strength that is truly beyond her year. She has been such an inspiration this year, and I am so glad that she has such strength and can carry us with her on this journey.

I am also thankful for our friends and family who have helped us throughout this crazy, insane, nut-so year. And of course the new friends and family who we have met along the way, who have helped in more ways than we could have ever dreamed possible.

Last, but not least, I am thankful for the doctors, nurses, social workers, volunteers, and families who have worked so hard to help heal our family inside and out, physically and emotionally, individually and together. There is so much more to fighting cancer than curing the disease. I feel that we couldn't do it alone, and that no one should ever have to fight on their own.

We finally came home on Monday night. The week in the hospital was full of ups and downs. Saoirse had been doing better at the beginning of the week, but by the time we started her radiation, she was deteriorating quickly. She would keep her head down, and didn't want to be put down unless it was to sleep. We could see the tumors getting larger on her skull, and her eye was being pushed forward. ONe morning her eye was so swollen that she almost couldn't open it, and it was surrounded by a bruise that made it look like she had been in a schoolyard fight. She seemed to be having migraine like headaches, and didn't want to look up if there were lights on, and kept throwing up. She wanted so badly to eat, but she just couldn't keep things down without tons of pain medicine. Her MIBG showed the activity in her skull and also showed positive results in the bone marrow of her pelvis, legs and arms. Her disease had certainly progressed, and had not responded to her last round of chemotherapy. She is officially a relapse patient, and now it's a game of trying to get it stable and under control. There is still the possibility of cure, but the chances drop drastically when it comes back. But there are a lot of new therapies out there, and there are so many ways to keep her disease under control, and someday they will figure it out, so there is always hope.
The first day of radiation was totally nerve wracking. The first day was full brain radiation, as the plan for the brain sparing would not be done so quickly (although the original estimate of Monday was moved up to Friday!). This was new territory to us, and I was nervous about how she would feel after. Surprisingly it didn't seem to phase her much. She was still feeling pretty awful and in tons of pain, and we were just trying to find something to make her more comfortable. Friday they stared the brain sparing plan, and even though the morning session was delayed to re-set the machine, things went pretty smoothly. The amount of time that she can't eat in between seems to be the hardest part of the twice a day radiation. We were worried about nutrition, so we talked to the nutritionist and she brought us some things that will help out. She has some juices that have added protein that count as clear liquids that Saoirse can drink in between sessions. This is a godsend since she spends the majority of the day not taking in any solid food. She also gave us some protein powder to add to her food, because all she wanted to eat was applesauce. By the end of Friday we were hoping that she would turn around for the weekend. WE were going to try and go home Saturday, but by the time it arrived, we weren't sure we wanted to take her home yet.
Saturday morning was still bad. Saoirse seemed to be in so much pain, and even the new pain medication didn't seem to be helping that much. I was worried that a tumor was pushing on her brain, causing her to throw up. The doctors were concerned that she had some swelling or even some fluid in her brain causing the increased pressure. They ordered a CT scan. Thankfully, it did not show any fluid, and there were no clots. It did show how much bigger the tumors had grown in a week, and that her brain was being irritated by the tumors on the underside of her skull. The doctors decided to change her steroid to one that would help reduce the swelling behind her eye as well as any swelling caused by the irritation. After one dose, Saoirse was like a new kid. She started smiling, and wanted to eat. She kept down her food, and she wanted ton interact with other people. She even wanted to walk down the hallway before bed. It was incredible. We had been so worried that she had taken a turn for the worst, but it seems that she was just having so much pressure from the swelling, that she couldn't overcome the pain. By Sunday, she was like herself. We spent a lot of time out and about, playing on the playground, running around the garden, and dancing to the juke box. She ate like a horse, and kept everything down. We were glad to have our baby back, and so glad to see that she was happy again. It makes it easier to fight for her.
Monday we had the double radiation, and then we came home. We were so excited to go, that the day kind of went nuts. Mike had to get the house ready, so I had her by myself all morning. We did a lot of walking around, and we took a trip down to the garden and juke box to play. After her nap, however, she was upset about the fact that she couldn't eat anything. She was feeling so much better, and had spent so many days not eating much, that she was starving. While Mike took her to the evening radiation, I packed up our room. By the time they came back, everything was packed and all we had to do was sign paperwork. That paperwork took 2 hours to get to us! A combination of shift change, medicine changes, and computer problems made it so that we were there until 8:30 at night. It was so frustrating, but we were so glad to be going home. With the late arrival, Saoirse was starving, and she ate some dinner and played with her toys and the dog before going to bed at almost 10. It made it hard to get up the next day, but we managed somehow. Tuesday and Wednesday we traveled in as outpatient to have her radiation and chemo, but that's a story for another day. Right now, we are just glad to be home.

The "What"...

2011-11-16T18:51:00.000-08:00

We came into the ER over the weekend because Saoirse was throwing up, and not able to keep down much food or water, and some of her meds. We wanted to make sure her labs were ok, and get her a quick bolus of fluids to tide her over. They drew cultures, because that's what is standard, and looked at her labs. Her labs looked great, her blood pressure and heart rate were perfect, and she sounded fine. They thought it was probably just a little tummy bug and that it would go away soon. We brought her home that night, and hoped that the throwing up would stop the next day.
The next morning she still wasn't herself. She kept down her food and her medicine, but she was very clingy and didn't want to be by herself. After a couple of hours she threw up again. Now I was nervous that she was having some sort of brain pressure causing the vomiting from the tumor sites that we now knew were in her skull. We put a call into the doctor, and they said to see how she did for a little while, and call if she threw up again. Lo and behold, she did, and we were just going to call when they called us.
The ER called to inform us that her blood culture was growing something and that we had to come back in right away to start antibiotics. We were going to be admitted. We were relieved that we had an answer to her vomiting, and were glad to get antibiotics started. We were hoping to be in for a day or two at most, and then take her home before figuring out what to do next about her bad scan.

Saoirse seemed to perk up over the first two days. That night, after getting meds and fluids, she ate some dinner and played before bed. The next day, she had a bit of a rough morning, but after some blood, she perked right up and went to play in the playroom and walk around the halls. She was having a blast until she ate too much for dinner, and got very sleepy. The only problem was that she was still throwing up at least once a day, usually at bedtime or first thing in the morning. No one had a good answer for why she was still feeling sick, and thought it would have more to do with her new tumor growth rather than the bug she was fighting.

We started talking about the next step. Everyone agrees that radiation is the way to go to kick it down quickly, and hopefully get it back under control. Her MIBG scan is set for Thursday, so we will find out then if there is any minute activity in her body (as her CT of her body was normal), or if it truly is all localized to her skull. We are hoping for the latter, and keeping our fingers crossed. We started contacting the doctors at Sloan to see if we should be trying to get down there for radiation. We had already met with the radiation oncologist there, and felt like she might be able to do a better technique than what they typically do here in Boston. Also, they do radiation twice a day, where as here they only do it once a day. We planned on meeting with the radiation oncologist here, Dr. Marcus, just to see what the schedule would be like and what could be done the quickest, and the best way for Saoirse. Initially, Dr. Marcus didn't think that she would be able to start radiation even before Thanksgiving next week. To us this was not an option. We felt like it was urgent to at least get things rolling by the end of this week, and start radiation at the latest on Monday. With this information we decided that traveling to NY would be the best option, if they would be able to get her started sooner and get the radiation done twice a day, meaning it would all be finished sooner.
However, a few hours later, Saoirse's team came in and asked if we wanted to start radiation planning the next morning. We were confused at this, because the last we had heard, there wasn't going to be a possibility of starting even before Thanksgiving, and we had kind of settled our minds on being transferred down to NY. They said that Dr. Marcus basically rearranged the entire schedule for the machine needed, and had gotten a team together to get her started with planning Wednesday, standard radiation Thursday and Friday, and brain sparing radiation as early as Monday. She had also arranged for her to receive two treatments per day, instead of the one that they usually do. This was astonishing to us, and we were just so shocked we didn't know what to do. We said that we would do her planning, so we didn't lose her spot, but we still wanted to talk to NY in the morning and see if it was really better to just stay here.
Mike talked to the fellow in NY, as Dr. Wolden wouldn't be in until later, and got some answers, but not definitive ones. We went and did the planning, and learned about what exactly went on as far as the radiation, and talked about how quickly they were going to be able to set up all of the treatments and the brain sparing plan. It was truly amazing how much work they were doing in order to get it together for us. We were very humbled and appreciative. After speaking with them, we really felt like it would be best to stay where we are as long as the technique really was the same, and according to both Dr. Marcus and Dr. Wolden, it is the same technique. We decided we needed to stay here and get things done. What they are doing for us is amazing, and we are so very glad that they are able to work so quickly for Saoirse. It makes us feel like they understand how important it is, and how important it is to us to have her healthy as soon as possible.

We can see the bumps on her head getting larger, and she has pressure behind her left eye. It is not a drastic as when she was first diagnosed, but it is definitely pushed out a bit. The veins in her head are going crazy, it seems like there are more of them each day, and that they are darker. I have asked about anti-angiogenics, but they will inhibit the effectiveness of radiation, so we can't use them yet. I hope to use them after. Her planning went smoothly and quickly, and we are set to start radiation tomorrow. She has an MIBG scan in the morning, which they are going to sedate her for because of how she is feeling, and the fact that they need a good scan. Then she will receive the first dose of radiation in the afternoon. She will have two rounds on Friday, and also on Monday through Wednesday next week. We will start chemo hopefully Friday, and hopefully be able to coordinate it so that we can go home over the weekend and just have the nurse come to run the half hour IV drug for the two days (the other drug is an oral). We will know more about that tomorrow. We just hope that the radiation starts to work quickly, and that she gets some relief right away. She is just so uncomfortable, and I wish I could take it all away. Fingers crossed.

We will be starting some research on what to do if 1) the radiation doesn't work, and 2) if it does, where to go next. Now she will not qualify for some of the standard treatments, but in some ways we have more options because a lot of new treatments are used on relapse patients first. There are a couple of very promising ones, and a couple of really alternative (but still promising) ones that we are looking into. All in all, there are about 4 or 5 that we will be researching over the next couple of weeks. Hopefully we will find one that will be the perfect fit, and hopefully it will be a non toxic option. Fingers Double Crossed!

Feelings....

2011-11-16T18:04:00.000-08:00

Feelings you have when your child has cancer:

Sadness

Anger

Defeat

Hope

Courage

Distress

Frustration

Love

Compassion

Contempt

Joy

Pain

Questions you ask when your child has cancer:

Why her?

When will it end?

Why now?

What will happen?

What choice is best?

How could this happen?

Will she be ok?

Now What.....

2011-11-11T19:22:00.000-08:00

Saoirse had a CT today. The results are not good. She has new lesions on her skull and her large tumor at the back of her head has grown. I am not sure where things go from here. We are still going to NY next week for further tests. We should know more Monday. Today is the first day I thought about the reality that she might die. The first day I let myself see the reality of her disease. Today I feel helpless, hopeless, and humbled. Today I have no answers - just questions, what ifs and uncertainty. Today I am weak, but she is strong - she makes me keep going. All I need is her smile.

FIX IT THE FIRST TIME!

2011-11-08T20:04:00.000-08:00

When asked to fix a problem, I am a believer in fixing it right the first time. Apparently when you are dealing with hospitals, this doesn't happen - a very dangerous combination!

We came home last Sunday from a week of intense chemo. Monday, Saoirse had labs drawn by the home nurse, and I looked forward to seeing if her blood counts were doing ok. She still wasn't eating or drinking much, and she was sleeping lots (mostly because of the nausea meds and Benadryl). We knew this chemo would hit her harder than others, so my focus was on keeping her nausea at bay as best as possible, and getting whatever food I could into her. Mostly she drank a few ounces of formula, some oatmeal, maybe some crackers or goldfish, and water that we forced into her with a syringe. Not anywhere near the balanced diet or volume of food that she usually consumes. Monday, her counts were fine according to the nurse who called, hemoglobin up to 9 (from 7.8 in hospital on Sunday), and ANC was still 1200. I figured, "Great - we'll just keep trying to get her to eat, and worry about a transfusion for later this week."
By Wednesday, we were concerned that she still was feeling so crappy and sleepy, and that she was still very very nauseous. We called the doctor, and checked in with her that morning, She was concerned that she might be getting a bit dehydrated, so she suggested going out to get some Pedialyte to get her hydrated and keep her electrolytes up. She also thought she could probably use a little IV hydration and most likely some blood, so she set up an appointment for us to come into clinic on Thursday morning and have everything done. That evening, when the home nurse stopped by to do a blood pressure (we called her because we were concerned), she mentioned to us that Saoirse's sodium had been below normal on Monday, and wondered if Jimmy Fund had said anything about watching her for dehydration. The Jimmy Fund nurse had not informed me of her below normal sodium when they called Monday, and had not said anything about making sure to keep her hydrated with something like Pedialyte. I still wasn't super concerned, since no one had said anything, but we did buy some Pedialyte that night, and we were glad we were going in to clinic the next morning.
We arrived Thursday, with a pretty happy baby. She took her nausea meds without gaging, we got her in the car, and she didn't gag once on the whole ride into Boston. She drank and ate when we arrived, slowly but eagerly, and we were excited that she was showing interest in things like toys and curious george on the iPad. The nurse had pulled her labs when we arrived, and taken her vitals. Her blood pressure was low, but we knew that she was somewhat dehydrated, and they wanted to get her hooked up to hydration asap. We went out back, hooked up, Saoirse drank some more of her bottle, and settled in to watch some Curious George. That's when all hell broke loose.

The nurse rushed back to our bed, saying that her sodium was dangerously low, and that she may have something called (ok, I can't remember it now, I'll get back to you on it), which is a side effect of the chemo and is worsened by additional sodium in the system - she went to turn off her fluid. The first thing out of my mouth was, "but she has no adrenal glands and doesn't regulate her own sodium. You know she has no adrenals, right?" She didn't!!!!!!! Strike one!
After she left her hydration alone, a bunch of nurses and the RN rushed back and told us that we were going to be transfered to the ER. WHAT?! I immediately refused. I couldn't understand why they would need to move her just to give her saline boluses. It didn't make any sense what so ever. She was happy, smiling, eating; my kid was doing better than she had in days, and they wanted to send her to the ER and admit her to the ward? We just got out! We came in because we thought she would need blood and a little hydration boost! What on earth were they doing? I told them they could do whatever they needed to there in clinic, and if they needed to transfer her up to 6 later, that was fine. I was also confused at what the big deal with low sodium was. In my mind, she just needed to get some hydration in and bring up her sodium levels that way. They said that she was at risk for a seizure.
Now the next part is a little bit of a blur, but basically it went like this:
The RN said that this was a big issue, and that in order to make sure that her levels were going in the right direction, we had to have labs drawn and analyzed often and quickly. This was the reasoning for the ER. When I asked her why we weren't alerted to the possible implications of her low salt levels on Monday, she said that her levels weren't low enough to be concerned about. I asked if this was shared with her endocrinologist on Monday, to make sure that nothing should be done, and she wasn't sure. She asked Dr. Shusterman (Saoirse's primary doctor) to come talk to us. HER SODIUM LEVEL WAS NEVER TOLD TO ME, NOR BROUGHT TO THE ATTENTION OF HER ENDOCRINOLOGIST!!! The reason given was that it was just below normal, and that it is usually a non issue. This is the point where I snapped.
What started as a controlled, firm reprimand, turned into an all out, emotionally driven, screaming, lecture. I accused her doctors of not working to keep my child safe in my home, and only acting when the situation became so dire that hospitalization was needed. I also brought to their attention that their failure to pass along important lab chemistry information to her endocrinologist put her in severe danger that could have been avoided by a simple email or phone call, and an earlier intervention in the clinic. I also reminded them that we had a similar situation of non communication between departments during her last post-chemotherapy hospitalization, and that they had assured me then that every lab was going to be sent to her endocrin team, no matter what, for review. I then asked them why people taking care of Saoirse and her labs were not aware that she had no adrenal glands. I couldn't understand why it wasn't at the top of her chart, screaming at anyone reading it for either treatment or lab analysis. As far as I'm concerned, her chart should read:
Saoirse Fitzgerald
6/1/10
Adrenal Insufficiency - no glands
This should be known by anyone who has anything to do with any aspect of her care, no matter how small. This is worse than a peanut or drug allergy, this is missing organs! As far as I was concerned, the doctors had failed to do their job - they had failed to provide proper care for my child, and now she was left in a dangerous situation that should have never come about. The doctor "apologized" for not sending her labs to endocrin, and for not informing me of the issue, but I could tell from her tone, that she was not convinced that she did anything wrong, and that she knew she had "followed protocol." This infuriated me, and I couldn't handle it anymore. Strike two!
So they took Saoirse (and Mike) by ambulance from Jimmy Fund to the ER at Children's (Yes, they drove her in an ambulance approximately 500 to 1000 feet to the other side of the street). I refused to go with them, and walked over on my own (our social worker Judy came with me). I was there before they were checked into the department. The whole time in the ER was frustrating and, as far as I'm concerned, pointless. We supposedly were sent there because they could get labs done more quickly, but it seemed to take them longer to get anything and everything done. They also were not in contact with her regular teams, only the ones on call, so her medicines and treatment were not being coordinated with any sense of her true history or her current status. It was a complete disaster. We were able to contact and coordinate with her doctors faster than the ER team working with her. Also, her nurse changed like three times in the eight hours we were there (yes eight hours! we were supposed to be out of there in like three). And for some strange reason they wouldn't let her eat! This was the first day in over a week that she had been asking to eat something, and they were refusing to allow her too. They kept saying that it might raise her sodium too quickly. What did they think I was going to give her, a salt lick? I was going to give her hummus, milk and applesauce, not salt and vinegar potato chips. So after six hours of being there, having to check and recheck everything ourselves, having to try and get her to nap with the chaos all around, and after her begging for food for two hours, she spiked a fever, and they started treating her for an "infection." The whole situation had spun into a chaos that was so frustrating and angering that I never want to set foot in that ER again. Strike three!

Saoirse's sodium levels were climbing up, she received a dose of antibiotics as a precaution, and we were admitted to the floor. Once we got up there, there was a lot of things happening to get settled, but all the nurses were working hard to get things organized as quickly as possible. The night went as well as expected and we started to regroup in the morning. I was still quite upset, but my focus was on getting Saoirse back to stable condition, and helping her feel better over all. She was having some diarrhea, and some painful urination, so I was concerned that there was an infection that stemmed from her being dehydrated for a few days. Some cultures were drawn, and Saoirse was put on precautions so that if she had an infection, it wouldn't be transferred to any of the other kids. The frustrating thing about precautions is that it confines her to her room (although by Saturday, the nurses became more lax as she was showing signs that she didn't have a transferable infection, and they allowed her to roam the hallways as long as we kept her out of the play and resource rooms). By Saturday her salt levels were back in the normal range, and we started asking about going home. The policy is that she can not leave until her ANC starts to climb, and the doctors did not think that that would happen anytime soon. We were left to battle about restrictions and circumstances and try and work to make sure that this didn't happen again, ever.
We were allowed to leave for three hours on Sunday morning so that we could go to my Nana's 89th birthday party. Saoirse was so excited. She got to run around with her cousins, and she was glad to be with family and not stuck in the hospital. I think she felt normal for the first time in about a week and a half, and I was so excited to see her happy. She seemed a little distressed when we went back to the hospital after the party. She looked at me with a look that said," but mum, we just left. Why are we back here?" I was sad to have to bring her back to her room by herself, without being able to play with the other kids, or better yet, her own dog at home. She was feeling so good, and I hate having her in the hospital when she is feeling well. By Sunday afternoon I was done being there and done with the doctors treating her numbers and not Saoirse the person. I felt like we were getting lines and lies, and I didn't know who to trust or believe any longer. It is a horrible feeling to feel like you can't trust the doctors who are supposed to be treating your child for a life threatening disease. I think this is the most disappointing part of this whole ordeal.
Saoirse's ANC came up on Monday morning, and we were allowed to go home. It took them hours to get her prescriptions ready, and I had to kind of keep on them, but I know they weren't expecting her to go home so soon, and they were a little unprepared. Saoirse was very excited to be home, and had fun chasing Fallon around the house until bed time. She has been taking her meds like a champ, and we are so proud of her for being so strong, and glad to have our happy baby at home with us again.

This is not the first time that Jimmy Fund has made a catastrophic mistake regarding Saoirse's care. The last time she spiked a fever in the clinic, they forgot to draw her blood cultures before they gave her IV antibiotics. Because of this, she was put on four or five different antibiotics (instead of one or two) because they wouldn't know if she had anything before antibiotics were administered. She was also sent home on IV antibiotics after that stay, and she suffered additional side effects from the ones she had been on in the hospital. We also had trouble with her oncology team not sending Saoirse's lab chemistries to her endocrinologists, and we spoke with them a couple of times on how important it is that all of her teams communicate regularly to coordinate her care at this crucial time in her treatment. I am a trusting person by nature, and I like to think that people will do what they say they will (especially doctor who are caring for a critically ill child). I also think that everyone can make a mistake. But mistakes must be learned from, and if the same mistake is repeated when it makes a difference in my child's health, there is absolutely no excuse.
I have expressed my complaints and concerns with all of her teams, who are now putting more strict rules into place to keep her safe in the future. I have also spoken with the nurse manager for children's and will be speaking with the care coordinator at the Jimmy Fund about what happened and what need to be put in place system wide to make sure that a similar mistake doesn't happen with Saoirse or any other patient.

Up and Up

2011-11-02T18:11:00.000-07:00

Today I am feeling like Saoirse is very small because she is not feeling well and very much depending on me, but I keep thinking about how big she is getting and how quickly. There is something about the kids in the oncology department that has always struck a chord with me. No matter the child or their diagnosis, they always look older than they are. I have found myself thinking about how old a child might be, only to find out that he or she is much younger. It seems like Saoirse has been growing up faster than ever. Her expressions seem to be so far beyond her years, and she seems to have life pretty figured out for now. I've been working on trying to capture some of her more "big girl" moments, and sometimes the pictures surprise even me. One of the doctors at sloan made the comment that many of the kids she sees are more mature because the spend so much time in an adult dominated world. That could be the key to their mature faces, or it could be the bald heads.

So in an effort to regain my baby's babyhood, I leave you with some bubbles!

Home and Haunts

2011-10-31T18:40:00.000-07:00

First off, Happy Halloween! We were so excited for Saoirse to dress up this year. When she started losing her hair, we would talk about who she looked like now that she was bald. We really liked the idea of making her Uncle Fester for Halloween, and so that's what she is! I made the costume using thrift store finds (where I also found her 3 pairs of shoes, a pair of winter boots, two toys, and a new dress for me). I love piecing together costumes instead of buying them off the rack. It's so much more unique. She was having kind of a crappy feeling day today, so we didn't do much in the way of celebrating, but after her afternoon nap, she put on her costume and stayed in it until we "trick or treated" to the neighbors' houses.

We are home. After six days in the hospital, it is good to finally have the whole family home together. This chemo was a kicker, but all things considering, Saoirse did very well through it. The first two days flew by, and then she had the total puke day, and then she mellowed out a bit. The last three days have been better as they go by, consisting of mostly sleeping with a little eating and playing mixed in. We are keeping her on a pretty intense regimen of anti nausea drugs, and they all make her sleepy; plus her body is working hard to handle the amount of chemo she had. She wanted to eat more today, and although she threw up a bit this morning, she took in more food than she has in the past few days. We abandoned milk, because it seemed to be upsetting her stomach, so we are sticking with bland foods and formula. It seems to be working, and we are hoping we can get through tomorrow without any puking. Fingers Crossed!

I think the hardest part of this round of chemo was the fact that it had to happen. In the realm of what could have been, Saoirse really handled the side effects well for the amount of toxicity she received. But I have been having a really hard time with the additional round. We are working so hard to make things go smoothly for her, and to keep her toxic exposure as minimal as we can, while fighting an extremely aggressive disease. We were hoping that the 3F8 antibody therapy would help to keep her from being exposed to the extreme toxicity of the chemo that comes with stem cell transplant. When this round came up, I just wanted to refuse. That sounds awful, but I wanted to keep her from experiencing another round of chemo. I was so excited for the fact that she was done with the toxic drugs, and horrible side effects, and would be able to start getting her energy, appetite, and freedom back. And I think the biggest disappointment was the tease of having a clear bone marrow that turned out to be false. She had responded so well to treatment, and I really felt as if she was more "normal" after her round six chemo. I know she has so much less disease than she had when she was diagnosed, but it just was such a let down. I think I could handle seeing her experience things that I went through, knowing that it was worth it in the long run to make her better, but when she started experiencing things that I didn't have to do, like surgery, mucositis, and super toxic cocktails, I started to feel like I couldn't help her as much. This is territory I hadn't done, and I couldn't look at her and tell her that everything would be alright anymore - because I didn't know. The fear of the unknown crept in and bit me, hard. All I can do now is keep hoping for full NED status, and to get to New York and start the next phase of treatment. I like to stick to a schedule.

We will be staying home for the next few days to avoid car sickness and more puking, but I hope that she will start to perk up in the next day or two and that we can do some fun things before we head to New York. Tomorrow is a new day!

Strolling Along

2011-10-27T18:33:00.000-07:00

When in NY, do as New Yorkers - which means tons and tons of walking. Saoirse, of course, can't walk the whole way, and she is getting so big and heavy, that carrying her all the time in the wrap or the backpack gets tiring. So we have a stroller - a big stroller, with big wheels and lots of accessories. When I was looking at strollers, I decided I wanted the option to put two kids in a stroller without having it be super long or door busting wide, and I wanted to get it now rather than buying a second stroller for the second kid. I found the Phil and Ted's line, and decided that that was the one for me. I had played with them a bit at the store, and liked the option of the second seat and the fact that it had real tires (the end of our road is dirt, and it's a nice walk) and an adjustable handle. Being the thrifty mama that I am, I didn't want to pay for a new one (super expensive!), so I found one on Craigslist and scooped it up - lock stock and barrel for $400. I even got a kit that turned the second seat into a bouncy seat, which was totally awesome for when the baby was tiny. All in all, the stroller is great - does what we wanted, and has tons of options. However, the thing is a boat! It folds in half, but the tires are large, and it takes up most of the back of our SUVs. Now, around here, no problem. But when you're trying to get in and out of a cab, or stash it away in a small "hotel" room, its not exactly practical. So I ventured into the realm of finding a new option. While in NY, we saw a few different strollers, and I kept looking at the names of the ones that I thought I would like. One stuck out, and surprisingly I didn't always know it was the same one until I saw the name. The B-ready - and it's made by Britax. I started looking into it when I got home. This thing is insane! multiple position seats, front and rear facing toddler seat, second seat option, double with a baby carrier, the list seems endless. It's still a big stroller, but it folds down more easily and much flatter. Plus, I love the seat better. Now, being my thrifty self, I still wasn't going to pay full price for this one (another super expensive!), so I hit up Craigslist again and found the stroller for a great price. Another great was that the woman lived just a few miles from the hospital so I could go grab it on my way in the other day. Now, this time I just got the stroller, and not all the bells and whistles with it, but I can piece together the other stuff as we need it. Mike already likes this one way better than the Phil and Ted's (he always voiced his dislike for many aspects of that stroller). All in all, I'm now the proud owner of two exorbitantly expensive strollers, although most likely I'll sell the Phil and Ted's once I'm sure the Britax is just what I want.
The first two days of this chemo flew by. Saoirse was running around and playing, wanting to color and walk, and eat like crazy. She did take an extra nap on Wednesday, but she is also on a lot of meds that make her sleepy. She wanted to walk everywhere. She is getting so independent, and as long as someone is with her, she wants to walk on her own and go her own way (this is difficult when walking outside - especially in the city as she doesn't like to hold my hand). Sadly, for this round, she has to be attached to the pole constantly for a medicine to protect her bladder from irritation. It has become harder and harder to follow her around with a pole as she likes to go her own way, and fast, and get into small places. Getting her to walk at a nice pace is a challenge, but I'm glad that she wants to be independent. I think my favorite thing right now is that she is really starting to open up to other people more. The nurses and volunteers are able to entertain her when she's feeling good, she likes to color with the people in the play room, and she even will strike up a "conversation" with someone she has just met. I've been a little worried that she was getting too used to the people she knew, and not learning how to interact with new people. I guess this is to be expected when she is being somewhat sheltered from some of the outside world right now. I'm just happy to see her starting to enjoy interacting with people other than the family.
After a fabulous yesterday, filled with tons of fun and food, Saoirse has had a very yucky day. The carboplatin had started to kick in, creating a very nauseous baby (luckily she only got two days of this drug, and she was already done with it). At 3 am she started throwing up. Not a lot, just some mucous. You could tell she was not happy. She wanted to stay asleep, and it was hard to even sit her up long enough to wipe her face. That's when it started. She threw up every hour until 8 am. She slept through the whole thing, but she wasn't getting great rest. When she did wake up a bit around 10, I tried to get her to eat a little something. She wanted nothing to do with food. I was, however, able to get her to take her oral meds after she had one more little puke at 10:30. Once she took her calcium carbonate, and the nurses rearranged her nausea medicines, she was able to comfortably sleep for about four hours without puking. She woke up, and did throw up a bit, but I really think it was because she was a little upset and was crying.
After I left for the night, she slept some more and then was up for a bit. She even ate a little for Mike, which is great, because getting some food in her belly would really help with the nausea. I'm hoping that she will drink a little milk overnight, and that she will slowly get her appetite back tomorrow. We knew this was coming, but it's still hard to see her go through it. I think the saving grace today was that she slept for most of the day and wasn't up crying and miserable. When she was sleeping she really seemed to be comfortable, and she loved it when I held her for a while. I feel like just our being there with her and holding her sometimes makes all the difference in the world. She is so loved, and I know she knows how much we care for her, but the element of touch just seems to make her relax. We'll keep on holding her, and let her run when she feels better.

Here We Go Again

2011-10-24T18:16:00.000-07:00

A short update, but there are not enough hours in the day. we went to clinic today to have labs drawn and sign consent for this cycle of chemo. The doctors are on board with a high dose round followed by antibody therapy at sloan. This is going to be a kicker of a cycle, and Saoirse may even need some stem cells afterwards to help her counts recover (it would not be a full blown transplant, just a recovery dose). We are going in in the morning and will start chemo in clinic before moving over to the hospital. The chemo will run for 5 days, and we will almost certainly be there for 6 for observation. We are hoping to return home then, but it will depend on how she reacts. There is a lot of unknowns with this round because it is a much higher dose of drugs than she has ever had, and one is a new drug. We hate the unknowns, but hopefully she will do well, as she has before. She is so strong, and such a little trooper.
After a weekend of not much sleeping, she had a great night's sleep on Sunday, and had a wonderful day today. I even got to get the pieces to make her halloween costume - she is going to be Uncle Fester! I'm very excited. We also got some new shoes, a pair of boots, and some fun new toys! I really need to hit the thrift store more often (or not because I'll find things I "need"). I'm pretty sure she won't be able to really go trick or treating this year, but at least she can dress up for some fun pictures!

Sloan and Setbacks

2011-10-20T20:00:00.000-07:00

After Mike's parents left, we went straight to New York City to visit Dr. Kushner at Memorial Sloan Kettering Cancer Center. Sloan Kettering does a different type of treatment after induction. They do not do stem cell rescue, but instead go straight on to antibody therapy for patients who have no evidence of disease (NED). The benefit of skipping the transplant is skipping the additional toxicity of the super high dose chemo. There are a lot of short and long term side effects that come with the type of chemo that goes along with stem cell, not to mention the four months of quarantine that follows because her immune system would be virtually non existent. Antibody therapy has short term side effects, including extreme pain and rashes, but there are no known long term side effects. We did a lot of research and reading and talking and asking about both options, as we knew this would be the biggest decision we made involving her treatment.
We knew we had to visit Sloan ourselves to get a feel for the place and the staff to see if we would be comfortable going there for treatment. It's always scary to go to a new place where you don't know how things go, and who people are. We also wanted to see how Saoirse would respond to the environment, as it is important that she be happy during her treatments. I think she was the first of us to really respond to Sloan. They have an enormous play room, and kids running around everywhere. She was making friends before we were checked in. Everyone is really social - parents talk to each other in a social way, and introduce themselves very quickly, and the kids just walk up and say hi to one another. (On a side note, this happens at children's, but I feel like it took a lot longer for people to get chatty and start to jump into discussions about treatment. This perception could also be because we are more comfortable now talking about what is going on as we are deeper into treatment than we were when we started hanging around Jimmy Fund and Children's.) When we met with the doctor, we were pleasantly surprised with the real stance he took on treatment options. He of course feels strongly that the treatments being done at sloan are working, but he also was straight forward about Saoirse's probable response to antibody as well as stem cell. I think we were expecting a little more of a sales pitch (which some of the doctors at children's expected us to receive), but instead we got really straight forward answers to our questions. Dr. Kushner was not pushing his treatment on us, but rather sharing the details of his treatment to inform us so we could make our own decision. That in itself was impressive, but we also really liked the idea of sparing Saoirse the long term side effects of the chemotherapy.
After our visit we did a lot of soul searching, more reading, some fun things to distract ourselves, and a lot of walking. Neither Mike nor I wanted to move hastily into this decision, and we wanted to be sure that we were completely at peace with the treatment we chose. Without spitting out a medical journal, and sparing everyone else the gory details and back and forths, we have decided to pursue treatment at Sloan. We feel that the Antibody therapy, with its fewer long term side effects and its objective to train the body to fight the NB with it's own power, is the best treatment for Saoirse at this time. So even with all the insurance paperwork and coordination we will have to do, not to mention the ridiculous amount of travel back and forth for two years, we are confident that this is the right path for our family, and more importantly, our little girl.

After we informed Sloan of our decision, we set up an appointment for a new bone marrow biopsy, as they need four sample points, rather than the two that Children's performs. We returned to New York on Monday, and had the biopsy on Tuesday. We met with Dr. Kushner to plan out Saoirse's treatment schedule, and to discuss the protocol. We also made an appointment to see the radiation oncologist there to discus where to go with Saoirse's radiation. This was the first time we really got to discuss the radiation portion of her treatment plan, as we had not approached this at children's yet. It was interesting to learn how they do the radiation at Sloan, and to learn about the radiation process in general. We are pretty sure we will be doing Saoirse's radiation there, although we will still meet with the doctors here to discus their point of view as well. We returned home, hopefully and happy that we had made our decision and that we were on our way into the next phase of treatment. We planned on having some great fun over the next two weeks, and were getting ready for our long trip to New York at the end of the month. We were excited, and calm for the first time in weeks.

This morning we received a call from Dr. Kushner in New York. Saoirse's more extensive bone marrow biopsy showed disease. We were devastated. We were even more saddened to find out that this meant additional chemo for Saoirse. She will have to undergo a round of higher dose chemo and another bone marrow biopsy before being able to start antibody therapy. As of tonight, we don't know what drugs she will receive, but we know that they will not be as toxic as the drugs for stem cell. We are hoping that one last dose will clear her marrow, and let us continue on the road we have chosen for her. Dr. Kushner did not seem to think that it was a "relapse" but rather a different result due to a different sampling of sites. Bone marrow biopsy's only take a small sample from one site, and are not a perfect process. I guess it's better to know that it is there, and to treat it appropriately, but we were really hoping to go smoothly into the next phase and to work with the schedule we had worked out at Sloan. But now, we will do a round of chemo at Children's next week, go to Sloan for another bone marrow in three weeks, and then (hopefully) get started on prepping for antibody and radiation. With all the positive results we have had so far, I guess there had to be a bump in the road sometime, so maybe this will be the only one, and it will be smooth sailing afterwards. Keeping our fingers crossed. Cancer Sucks!!!!

Meet Me at the Fair!

2011-10-19T18:51:00.000-07:00

Mike's parents came out to visit. We were very excited, as we haven't seen them since Saoirse was two weeks old. We got out of the hospital just in time. Monday morning was looking a little bleak for getting out at first, but I told them we had to be out by bedtime so that we could get home to get the house ready for guests. Sadly, they had to follow us around the hospital for the first two days, as Saoirse had all her tests to do. But it was nice to get to show them where we had been spending half our time for the past five months. One thing was planned that we absolutely had to make happen - the Topsfield Fair.
Danvers is one town over from Topsfield - the home of the oldest continuously running fair in the US. I have been going to the fair since I was little, and love going every year to see the giant pumpkin, eat a pickle, and see all the farm animals. Saoirse has been very into animals and making animal sounds lately, so we wanted to make sure that she got to see them at the fair. We went on a Thursday, so that hopefully it wouldn't be so packed with people (it wasn't too bad), and we could get around to all the things we wanted to see. We got some lunch and then toured around, seeing all the vegetables and taking a picture at the giant pumpkin. Saoirse wanted to see some animals, so we looked at the sheep and llamas and alpacas. We walked around and were walking through the crafting area when Saoirse wanted to watch a woman throwing a pot. She thought this was very interesting, so I'm pretty sure we're going to have to get her some clay and a toy potters wheel. The highlight of the day for her was watching the horses compete in the arena. She loves horses, and watching them run and trot seems to absolutely thrill her. We stayed there for a while and watched the horses compete, and she clapped after every round. It was hard to tear her away. Even though we couldn't let her touch anything, or run around the petting zoo, She seemed to have a blast. I can't wait for next year when she will be able to do all the things she wants.
We also hit a festival in Newburyport over the weekend. This was more like a sidewalk sale, but it was fun to walk around outside and listen to some music. We even got to discover a few new things in town that we didn't know where there, including an awesome antique store that had so much stuff you could spend days there! I also got something that I have been looking for forever - a 2 foot leash to walk Fallon with - made by a woman who creates things out of lobster trap rope. I couldn't believe it when I saw her whipping one up as I walked by, I kind of accosted her and asked to buy one. All in all, it was a great day, and we all enjoyed spending time outside dancing and laughing and discovering new things together.
As the week went on Saoirse started to warm up to her Mamaw and Papaw. At first, she wasn't sure about these "two people hanging out with us all the time," but she started to warm up to them and by the end of the week was loving playing and laughing with them. Hopefully we will be able to see them more often so that she can run up to them and hug them as soon as she sees them. Maybe we will have to skype more often.
After all the tests and all the fun, we got some very good news. Dr. Obeng called us to let us know that Saoirse's MIBG scan had come back with no evidence of disease (NED)! The scan showed no dye picked up anywhere in her body. The CT scans confirmed, and the bone marrows, which came back later, were clean as well. Saoirse is officially NED, and is doing wonderfully. We are not out of the woods however, as Neuroblastoma is a notoriously tricky disease, and can hide out in the body in cells too small to be seen on scans (minimal residual disease, or MRD). With the results of her scans, we will be traveling to New York City to meet with a doctor at Sloan Kettering Memorial Cancer Center and discuss other options for Saoirse's next step in treatment. This is by far the most difficult decision we will be making in her treatment plan, as the options are very different from one another. Right now we are just thrilled that she has responded so well to her treatments, and that she is doing so well after everything she has been through.

Home..... Sort of

2011-10-16T19:21:00.000-07:00

After a couple of days of stagnant counts, Saoirse's ANC shot up like a rocket! We had seen an improvement on Sunday, but her overnight counts hadn't shown any increase, so we had them repeat the ANC, and it jumped from 0 to 160 in just 10 hours. By Monday morning it was up to 600. She hadn't had a fever since Friday night, so she was definitely on the mend. I kept telling the nurses and doctors that as soon as her ANC started to rise, we would see a totally different baby within 24 hours. I don't think they believed me, but it was certainly true. By Monday she was up, playing, off morphine, and wanting desperately to go go go. We had a couple of scheduled appointments Monday, and my parents came in to do overlap control (the baby had an audiology appointment that ran into our meeting with her doctors about the stem cell protocol). After a trip to ophthalmology in the afternoon, we were getting antsy, and ready to leave.
We were delayed, however, because we were going to be sent home on an IV antibiotic which had to be ordered and run once at the hospital to check for side effects. When we first came into the Jimmy Fund on Wednesday, they started antibiotics before they took any blood cultures. This mistake on their part meant that they didn't know for sure that Saoirse was free of bacterial infection, as the antibiotics work very quickly. We had been made aware of the mistake when it was realized, but we didn't know that it would cause her to be overmedicated throughout her hospital stay and once we went home. I made it clear to the doctors that I found it insane that she had to suffer from over prescribing because of a mistake made by a nurse, and that I wouldn't tolerate a similar mistake in the future. We had no choice in the home antibiotic, but it wasn't too bad. I chose to forgo her Bactrim for the week, as the full spectrum of the other drug would cover anything that was going on, and I hate over medicating - especially with antibiotics which mess with her gut so much. But with everything straightened out, and all the meds ordered, we were finally on our way home. Just in time to have to turn around the next morning and come in for an appointment.
Tuesday morning we were in bright and early for her bone marrow biopsy. There was a terrible storm on the north shore overnight, blowing down some debris, and causing tons of flash flooding. The two main highways into the city from our house were flooded out, so we had to go around the flooding on side streets before getting back on the long route into the city. We got in a bit late, but they took her right in and got her started. Once she was out and we saw her, Mike ran to Logan airport to pick up his parents, who came to visit for the week. We woke Saoirse up from surgery quickly, and I ran her over to nuclear medicine to have her injection for her MIBG scan the next day. Mike and his parents met me there, and my dad was with us to help keep Saoirse entertained while Mike and I met with the Stem cell doctor in the early afternoon. Luckily, Saoirse napped through the whole meeting (sadly on my dad's shoulder, putting his arm to sleep). After the meeting we got to have a quick bite to eat, and then headed home. We were right back in on Wednesday, though, for her MIBG scan in the morning, and her CT scan in the afternoon.
The MIBG went well for the first half, but she screamed through the second half. That is by far the longest scan, lasting a little over an hour. but she doesn't have to be absolutely still, so she doesn't get sedated. For her CT scan, we planned on napping her instead of sedating her. It was a bit tricky though, as she is becoming more aware of what is going on. We managed to get the nap for the belly and body part, however to scan her head we had to move her up the table into the head cradle. She woke up, and was mad and scared of the machine. There was no use trying to put her to sleep. We decided not to sedate her that day as it was late, and Mike's parents were patiently waiting patiently downstairs. We made an appointment for Friday, and planned on sedating her if we couldn't get her to nap right away. We came in Friday at 11 for her dental exam, and then had her run around until her CT appointment. We got her to go to sleep, but she wouldn't stay asleep on the table. We had to sedate her. We had been afraid of what it would do, but it was actually very simple and straight forward. She went to sleep, the scan was done, and then she went to recovery to wake up. She was awake after about 20 minutes, drank down a bottle of juice and went straight for the goldfish. We got home late, because we had to wait until 3:30 to sedate her since she had eaten a bottle at 7:30, but we were glad to have all of her scans and tests done. Now we had to just wait for the results.
After being in the hospital for almost a week for mucositis, we felt like we were still in with all the testing she had to undergo that week. It's such a pain to have so many scans, but they did a really good job of squeezing them into as few days as possible. We did find out that Saoirse has some hearing loss at high frequency, and is borderline in the mid range, but she is still responding to us when we talk to her, and is repeating sounds and learning words, so we are not concerned that it is having an affect on her development as of now. As we wait for the test results, we will have tons of fun things to do with Mike's parents visiting, and we are looking forward to a trip to NYC and Sloan Kettering to explore her other options.

High Test Stress

2011-10-14T19:12:00.000-07:00

The past few weeks have been crazy. This will be a short update, but expect two or three in the next few days. After a week of mucositis, we had a week of tests, and then a mad dash trip to NYC for an evaluation and a little R & R before the big push into the next phase of treatment. We had an amazing visit with Mike's parents in there too! It has been busy, and crazy, and we haven't had a minute to rest, but we have tried to enjoy every second with Saoirse. She has experienced a ton of new things, and had lots of fun, and those are some of the most important things. Now for some much needed sleep, and hopefully a super fun and exciting weekend!

Ups and Downs

2011-09-30T19:07:00.000-07:00

This past week has been overwhelming. So much is going on, and there are never enough hours in the day. We have had some incredibly amazing moments, where you want them to last forever, and we have had some super stressful, scary ones too. Not only is Cancer a 24/7 job, but it's also bipolar.
After the balancing act of the steroid home dose, Saoirse had such a great Sunday and Monday. On our Sunday evening family walk, she laughed at Fallon playing with the neighbor dog, and waved to the people getting home from work. We even found a fun little historical landmark hidden behind a house down the street - super cool! She even had a decent time at clinic on Monday. But she stared in on the low grade fevers on Tuesday, and was borderline all night. After a night of no sleep for us (we were checking her temp every couple of hours), she managed to go down to normal for like an hour in the morning, but we went in to clinic Wednesday because we really felt that she at lest needed blood, and that she was going down hill fast. Lo and behold, a fever spike kept us in, and we stared the inevitable hospital stay.
The hospital is always a little bit of a nightmare. First off, we aren't on the usual ward, 6 North, we are next door in overflow, 6 East. At first we weren't so sure about the switch, but after being her, we kind of like it. For one, it's a ton quieter overnight, and it's a little calmer; plus it's all private rooms! The downfall to being in overflow, is that we were waiting for a room forever because they had to discharge someone to get us a room. It just meant that my sick kid was hanging out not feeling well, and in limbo for a while. Granted, most of the limbo was spent eating the pasta dinner they had on the floor that night (nice for me because I didn't have to try and find food once I got her in bed), but still a pain. Once we got the room settled, we had to wait for the doctors over here to write all her orders for the night. Unfortunately, she was due for a dose of hydrocortisone right away, and we had to wait for it from pharmacy. This was the only thing that was really worrying me, but they were doing their best to get it up here. It was a late night, but overnight went pretty well, with only a couple of wakings, and her pain seemed to be pretty well managed.
Thursday we thought was going to be an upturn, but it definitely was not. The day started ok, fevers seemed to be spacing out a bit, she was drinking and eating some, and she wanted to be up and playing a bit. She took a long nap, and once she got up, she seemed ok, but in a bit more pain than she had been. When I left around 4 she was upset, but Mike says she danced around a bit before bed. Now I don't have a full account of the craziness overnight, but according to Mike and the nurses and doctors, it was an absolute nightmare. High heart rates, low blood pressures, skyrocketing temperatures that wouldn't stay down even with tylenol, and talk of a transfer to the ICU. Alarms were going off constantly, and the whole team was in and out all night watching to make sure she would stabilize.
The first I heard was a text at 7:30 Friday morning telling me that she might be transfered to the ICU. Of course, I panicked, and called Mike to find out what was happening. Apparently, her counts had dropped super low, and she was not handling the stress well at all. They stared blood transfusions (platelets and red cells) in the early morning, and I suggested they put a cooling blanket under her before they resorted to ICU. Those things seemed to do the trick, and she began to stabilize. Once I got in, she started to wake up, and when she snuggled with me for a few minutes, she seemed to perk up a bit. She did even better when they turned her pain pump up a little, and she asked for the bottle for the first time in two days. Her fever, although still there, was staying down for longer, and not spiking so high. She actually ate and played and talked a bit. After her nap, she had some more to drink and some carrots, and wanted to run around so we had the nurse disconnect her from her leads. She wasn't totally into walking at first, but after a trip to the playroom and train table, she was enjoying wandering around and playing with the balls. She drew with one of the other little girls, and they were having fun sharing crayons and tickling each other. Saoirse was chatting her up, and Adry was totally into the "conversation." She was like a totally different baby. She did have a little temp when she was going off to bed (after I tortured her by giving her a ton of oral meds), but all in all, the day was much better by the end. I just hope that it means her counts are starting to rise, and that she can start healing herself over the next day or two.

Our other challenge of exploring Saoirse's treatment options continues to be intensely stressful. There is so much to read and learn and decipher about how to treat this erratic disease. Unlike Hodgkin's, which is straight forward and pretty uneventful to treat, Neuroblastoma continually changes its game and tries to sneak in nasty tricks. There are a lot of opinions on treatment (one other parent went to the conference held in Chicago and said it was like a sales pitch), but we are focusing on the ones we think are feasible for us and her, and hopefully don't require us to move out of state full time. Today we made progress in finding a local IVC clinic, and talking to Sloan Kettering in NYC. I am hopeful that by Monday we will know more about those two parts of the puzzle. However, I still feel that although we take steps forward each day, time is ever closing in, and the pile of reading and research gets ever larger. There are so many variables to consider - I know why some parents just let the doctors do their thing and don't look farther than their first introduction. Some days I wish that I could be that parent. But I'm not, and I have to look at the rest of the world and decide with knowledge, or else I would always wonder if there had been something that I missed. This is both my downfall, and my triumph as a parent, and I'm pretty sure that it won't be the last time I am confronted with a nasty, research heavy decision. I do, however, hope that it is the last time I have to make one that involves life and death.

Its All About Balance

2011-09-27T19:50:00.000-07:00

Things have been a little off balance since we got home from the hospital. First off, there is a whole lot of no sleep happening. We have been so busy trying to get things together for her next stage and researching all her options, as well as working on fundraising and the house. Needless to say, when the baby is sleeping or napping, we are working until we crash. The baby has done ok the past couple of days with sleep, but the first few nights were rough (that's what happens after hospitals stays though, so we knew it was coming).

We have also been working on balancing her new maintenance medicines. The doses they started her on were a bit high, and it made her nuts for the first two days. She threw a couple of fits on Saturday, so we called the doctor on call, and had them check her dosages and see if they could change anything. We lowered the dose of her salt medicine the first day, which helped right away, and then the next day we dropped her overnight dose of hydrocortisone which helped with the mood, and also made it so we didn't have to wake her overnight for medicine. Changing that made a huge difference, and we were able to have our happy baby back, and weren't being attacked at dinner time.

Monday we went into Jimmy fund to have a meeting with the doctors and to schedule her re-staging tests. We spoke to the doctors about her response so far, and talked to them about possible other options for the next step of treatment, expressing our concerns about the heavy dose of chemo now that she has lost her adrenal glands. They are so great - they are glad that we are looking into our options, and will help us however they can. Of course they think that, because of how she has been doing, she will do well with the stem cell transplant, but we just want to be sure that we have done our research and have chosen the best option for her. We have about three weeks to make a final decision. I'm feeling the pressure, but it's important for us to look into everything we can. We owe it to her to look into all of the options available, and to choose the one that will balance destroying the cancer, and having a great quality of life after her treatment is finished.

Today was an ok day. We know that she is showing signs of mucositis, so we are keeping her full of pain medicine to try and help ease the pain and stave of a fever. We started the day with a little play date, which Saoirse wasn't totally into the whole time, but Ginger had great fun pulling the toys off the new shelves. They did do some "sharing" and chased each other looking for trouble, but Saoirse really was feeling off. She did eat, but she definitely isn't feeling like herself. I'm pretty sure we will be at the hospital in the next couple days, as her temperature has been creeping up, but hopefully her counts will be starting to rebound on Thursday, and we will be able to avoid a long hospital stay. We will be working on lots of tests anyway, so I guess if she has to go in, at least we will have something to do while we are there. I just hope she feels a bit better tomorrow.

Home Sweet Home

2011-09-23T19:23:00.000-07:00

Another short one, as there has been a lot going on and I am still exhausted. We are glad to be home. Saoirse's chemo was started on Monday, and she took it in stride. She was still a bit cranky from surgery, and so this round seemed a bit harder for her. She has been having some mood swings, but I think some of that is from the steroids, and some is from frustration of being tired and achy. We were discharged Thursday night, and after a crazy time with prescription organizing, Saoirse was happy to be going home. She chatted me up the whole ride home, and ran for Fallon as soon as we got in the door. Sadly, this little run made her trip and fall twice, and she went to bed soon after. There will be a lot of adjustments over the next few weeks. She is learning to live on steroids, and we are learning to live with her on steroids. We are also starting to plan for the next phase of treatment. We are doing a lot of research, and are looking into all our options. More to come, and hopefully tonight we will get a good night's sleep.

Steps Forward

2011-09-18T19:19:00.000-07:00

This won't be a long post, as it has been a long day. However, Saoirse is making great strides in her healing. The teams here are impressed with her progress, and she is getting better each day. She ate more today, including some squash, some cheese, and her loved goldfish. She is drinking formula and pooping and peeing like a champ. We did a little "physical therapy" today and had her lifting her legs to reach a toy balanced on her toes. She stood up a few times, taking just a couple steps, but when I brought her to the train table in the play room, she walked around playing trains as she loves to do. She is wobbly, as she is not yet using her abdominal muscles, but she is determined, and is doing great! She is still on fracture risk because of the high dose of steroids she is getting for her lack of adrenal glands, but as soon as we go home, that will no longer be an issue. We will be starting her chemotherapy tomorrow, and hopefully we will be able to stave off such terrible mucositis this time around. I am pretty sure we will be back here in a week and a half or so, but there is always hoping. If I'm successful in raising her GCSF post chemo to boost her counts faster, hopefully any mucositis she gets will be shorter in duration. Fingers crossed. Hopefully we'll be going home Friday afternoon. I can't wait!

Sunrise on Good

2011-09-15T19:31:00.000-07:00

Saoirse is doing very well post surgery. All the teams working on her case are so pleased with her progress. The nurse even told me today that she is healing faster than any neuroblastoma resectomies she has seen. We are very happy with how quickly Saoirse is coming back toward normal. She is definitely still uncomfortable (which she should be), but her pain is completely under control. Today she even was playful, smiling and gesturing at the TV, and playing with stickers. She desperately wanted me to hold her today (which we haven't done post surgery because of her many tubes), so we set it up so that I could hold her in my lap for a while. She was in heaven, as could be told by her immediate drop in heart rate! She completely relaxed and was happy, and then perked up a bit more, snuggling in and getting comfortable. She is trying to move around more, which is good as she is still retaining some fluid which is making her puffy and moving will help to push it out of her tissues. Although her NG tube didn't come out today as we had hoped, we are almost positive it will be removed tomorrow. She really wants to eat, so we are hoping to start her doing that tomorrow as long as her tummy is ready for food. After a few days of dead-pan Saoirse, I was so glad to see glimmers of her happy self today, and hopefully we'll see even more tomorrow. She is a strong little girl, and is proving that she won't let anything get her down!
I am starting a new idea and project, and I'm slowly developing it in my mind. I am not saying much now, as more "research" has to be done, but I will be showing a sneak peak soon. It is a photography project, and Saoirse will be the first subject - more to come. That is all.

Going to the Zoo....

2011-09-13T17:56:00.000-07:00

We had a great week full of fun before Saoirse's surgery. We knew she would be down and out for a bit, so we wanted to fill her with fun and happy thoughts before she had to stay in bed for a while.
Sunday we took Saoirse to the zoo for the first time. We went to the Stone Zoo which is close to home. Even though it doesn't have any large animals like elephants or giraffes, Saoirse loved seeing the animals and walking around. Of course the monkeys were her favorite, and she was trying to talk to them through the glass. SO CUTE! One of the big black bears even sat and stared at her for a while while she snacked on goldfish in front of him. I'm sure she would have been willing to share if they weren't separated by fences. As we were wandering around, we heard someone yell out "Saoirse!" We, of course, turned right away, and another woman was calling her daughter over to her. We asked if her name was Saoirse, and introduced the Saoirses to each other. She was an adorable little (about 4 year-old) girl, with pretty blonde, curly hair, and it made me think about what our Saoirse's hair will look like when it grows in. I would just love if it was the cute little baby curls that always make for adorable hairdos. After a long day at the zoo, we came home and got ready for the next day of craziness.
Monday morning, bright and early, we went down to Boston for another "zoo" - Saoirse's tumor resection surgery. This was the big one - they opened her abdomen all the way across and removed her primary tumors and any other tumor cells they could see and feel in her abdomen. Dr. Weldon was the surgeon, and he was amazing. From pre-op to post-op, he explained everything, was straight forward about the risks and the realities, and made us feel confident that she was in the best hands and that he would do whatever was best for her, while removing all of the tumor he could find. I don't know what it is about him, but whenever he talks to us, I feel a calm come over me, and I know that she is in good hands and will be well taken care of. We were briefed by the anesthesiologists and talked to Dr Weldon before Saoirse went into the OR. We were prepared for a 8 to 12 hour surgery, and were ready to wait all day. The nurses update what is happening in the OR every 60 to 90 minutes, and we waited eagerly for the updates, and were glad to hear how well she was doing each time. Saoirse went into surgery at about 7:30 am, and Dr. Weldon opened at around 9:30. We had breakfast, I took a little nap, we wandered around Fenway and had lunch, and when we got back from lunch we got our final update - at 2:30, the doctor was closing. The surgery had lasted just 5 hours. The news from the OR was good, but I had a nervous feeling - I just knew that they hadn't been able to save any of her adrenal glands. Of course, I hoped for the best as we waited to talk to Dr. Weldon, but I was right. Dr Weldon was very happy with how the surgery went, he said her other organs look great, and that she shouldn't have any issues with them, but he had to take out both adrenal glands along with the tumor that was intertwined with them. The best news, was that he got everything he could see and feel, and she handled the surgery very well. We couldn't wait to see her, and were brought right up to ICU.
Saoirse was on a lot of medicines when we got in to see her. Of course there is pain medication, which was being put through an epidural, some fluids, some hepron to keep lines open, and some steroids and antibiotics. With the loss of her adrenal glands, her body no longer has the hormones to control stress, so she is on a stress dose of steroids to replace those hormones and help her regulate her stress levels and be able to heal. Over night was rough, she wasn't comfortable, and her pain was pretty high. Every time he pain would be managed, and she fell asleep, her blood pressure dropped, setting off alarms and waking her up. I sat by her bed all night, trying to keep her calm and keep her heart rate down. There was some adjusting of medications, and a time when she pulled her NG tube half way out and it had to be re-inserted. With all the craziness, I didn't get any sleep, but she got some intermittent sleep which was good. Today, I called Mike to come in early because I couldn't sit up anymore, and I got to take a quick nap while he sat with her. The pain management team came in to work on managing her pain better, and the endocrinology team looked at her dosing for her steroids, and wrote for a higher dose to try and manage her stress response better. It took most of the day to implement all the new medications and dosages, and over the course of the day she was running a rather high fever, but she seemed to be in less pain by the afternoon. She even pooped, which means that she can start some oral intake tomorrow morning, which is a step in the right direction! I came home for the night, but Mike told me that her fever is under control, and her heart rate has gone down significantly. Hopefully tomorrow we can bring her down stairs to her friends on the sixth floor, and she can start doing some more normal things. I will be brining plenty of Curious George videos for her to watch while she's still sore.

News and Nerves

2011-09-07T18:50:00.000-07:00

This week is full of doctors appointments interspersed with tons of fun with the baby. The summer has gone by so fast, but we had a nice labor day weekend, and spent time with family and friends.
I had all my scans done over the weekend, and received my results today. I am officially in remission, and the lymph nodes in my neck have shrunk even more than on the last scans. My body doesn't take up any dye, so I'm in full remission. It's a relief to have the final scans done and to be officially on follow up. And I can eat SUSHI!!!
Saoirse had a regular pediatrician appointment (so calm in comparison), and her surgical consult for her abdominal surgery. She is also having pre-op later this week. The meeting with the surgeon went very well. He came in with good news - the tumors had shrunk about 30% since the last scans, and 60-70% since her diagnosis. Also, the tumors show a lot of calcification, which hopefully means that most of the tissue has died. Most of her tumors had been dead tissue when they did the initial biopsy, but seeing the calcification hopefully means that any living tissue is now dead as well. Seeing the difference in the placement of her other organs is astonishing as well! Her kidneys had been pushed way down towards her pelvis and sort of squished in there, and now they are up where they are supposed to be and actually look like kidneys. The tumors have also shrunk away from some of the main blood supply of her kidneys, which means that there should be less complications during the surgery. Saoirse will loose her right adrenal gland, but the surgeon is hoping to save at least part of her left one. Of course, the goal is to remove all the tumor that can be seen and felt, but we are hoping that she can have as normal a life as possible when this is all over, and saving even just 20% of that gland would make that more possible. It's nerve wracking to have her be in surgery for up to 12 hours, but we know that it is to help her heal, and we just have to grin and bear it. We will hope for the best, and hug her lots when she gets out.
After the surgery, Saoirse will be in the hospital for about 2 weeks, so we are doing as much fun stuff as we can before then. We have had a few play dates, and even went up to a friend's in Maine - which I think is the first time she's been to Maine. We are going to storytime tomorrow, and will (weather permitting) be adventuring to the zoo sometime over the weekend. I was even able to go to "moms' night out" with friends last weekend, and we had a blast! I really think we should make it monthly.

A disposable life

2011-09-01T19:41:00.000-07:00

We got a new delivery of medical supplies today. A big handle bag filled with plastic syringes, gloves, and other supplies, each individually wrapped in plastic and packaged in more plastic. Half of the liquid in every syringe is thrown out, and none of it is recyclable. We now go through paper towels and sanitizing wipes like crazy, we use disposable diapers and wipes when she's on chemo (so we don't have to try and wash chemicals out of cloth diapers), and we throw away gobs and gobs of plastic every day! For me, this is so hard to deal with. I've always been a recycle-everything, use-dishtowels, cloth-diaper using mom, so this is a huge stretch for me. I know its important, and that all of this waste helps to keep her safe and infection free, but it doesn't make it any easier to accept. We see tons of waste at the hospital too - for the same reasons, to keep everyone safe and infection free - but I am always thinking that there must be some way to cut down on waste and make things more efficient. But this is a problem that I can't fix. So I will not try. All I can do is accept it for now, and go back to my usual patterns when everything is over.

September is Childhood Cancer Awareness Month! Help spread the word about pediatric cancer and share our story with others that you know. 46 children are diagnosed with cancer every day, and 7 will loose their fight. Approximately 700 kids will be diagnosed with Neuroblastoma this year, and nearly 50% of them will not survive. Most children have advanced disease that has spread by the time they are diagnosed. Pediatricians need to be more aware of what to look for and what the EARLY symptoms are, so that disease can be caught while it is still treatable. Help spread the word, and help a family that has been touched by childhood cancer. A call or a hug can sometimes turn a day around.

Nightmares

2011-08-31T19:32:00.000-07:00

We have always been lucky having a happy girl who likes her sleep. Saoirse has actually been sleeping through the night since she was about 10 weeks old (yes weeks!). Mike and I got quite accustomed to our quiet nights, sleeping until 7 or 8 am without interruptions. However, with all the hospital visits, her sleeping habits have been interrupted quite a bit. When we are in the hospital, we have to put her completely to sleep before we put her in the crib so she doesn't tangle her IV tubes. This means that we have to repeat "cry it out" almost every time we come home. Usually it only takes one night, and she goes back to going to sleep on her own easily, but that first night is always a nightmare. She is getting more used to going back and forth, but after the Mucositis stay, she had a rough time.
Since Saoirse started treatments, she has had a few nights here and there when she would wake up. At first we thought a lot of it was nausea, and we would give her more meds and feed her, but eventually we realized that some of it was just repeat waking because of the disturbed sleep at the hospital. So we spent a while weaning her off the night feedings and meds, and we eventually got back to full nights of sleeping, with one minor addition - night screaming. It's rare that Saoirse will full on wake up in the night, but she now has many nights when she screams out. She has a blood curdling scream, and it breaks my heart every time I hear her. We know she's usually not fully awake, because a couple times we have gone into her room, found her still lying down with her eyes closed, and if she did look at us and woke up it disturbed her even more. We no longer go into her room, but occasionally there will be nights when she screams out more than once. I just know that she is having nightmares about what she is going through. She may not understand it, and may not seem to notice while she's awake, but I know that she's dreaming about the pain that she's experienced. I hate that I can't keep her from feeling that pain. I only hope that she will eventually forget everything and the nightmares won't continue for too long after she's done with treatments.
The nights are getting better, and since her last hospital stay, she has had less nightmares. Most days we don't hear from her until 6 or 7 am. However those nights that she does scream out aren't any easier for me or Mike. It's just so hard to realize that she has experienced things that make her scared. As a mom, you want to protect your children as much as you can, especially when they are so young, and you don't want them to experience anything that would cause them pain. But when the thing she is afraid of is saving her life, there is no other choice to be made. All we can do is make the good, fun and loving experiences happen as often as they can, and hopefully that's what she start dreaming about.

Force Feeding

2011-08-27T19:06:00.000-07:00

We had Saoirse's 5th cycle of chemo this week. With a couple of convenience and comfortability hiccups, everything went smoothly. We went into Jimmy Fund and got started pretty quickly, and made sure that things were rolling over at the hospital so we could go over when she was done with chemo. The floor was full of kids, so we ended up in a double room on the dreaded A side, meaning a very small space and no window. It's a hard spot to be with Saoirse because we try to keep her on a tight schedule, and most other kids don't sleep as much as she does. But, we had no other option, so we made it work, and for the third night, Mike was able to go to an empty room with her and they got a good night's sleep. She took this round like a champ, and even kept eating and drinking through all of it. Whenever we go through chemo, we try to keep food in her stomach to help with the nausea. Sadly, chemo makes all food smell and taste different, and sometimes its hard to get Saoirse to eat willingly. This is where the art "force feeding" comes in.
It's not really forcing, per say. The first bite is the biggest challenge, and then after she gets a taste and remembers what it is, she usually will eat more willingly. There are certain foods she won't eat, the most prominent being eggs (they smell horrible - I spent my whole time on chemo not eating eggs hardly at all), but other than that, most of the time she'll eat a pretty balanced meal throughout the day. Distractions are a great way to get her to eat more than she thinks she's eating. The dog is great for this, as Saoirse will always look to see what the dog is doing (and will most of the time laugh or pant which means an open mouth for food!). games and books will sometimes work, but often times, especially in the hospital, we resort to PBS Kids - especially Curious George. Sometimes it looks like we're tormenting her, but getting her to eat is an important part of her getting better. I know some parents don't want to force their kids to eat, but I know that if she eats she will feel much better over all (this is also why I request that her chemo be run during the day so that she can eat while she's getting it). I can't bear the thought of her getting a feeding tube, and I know that if she doesn't keep food in her stomach, she will be more nauseous and therefor less likely to eat later. We have managed to keep her eating through all of her treatments so far, and she has gained three pounds since she was diagnosed. (This is also a good sign that the cancer is no longer taking so much of her nourishment, and hopefully no longer growing.)
One of Saoirse's favorite foods right now is goldfish, so we always keep them around. Many times, getting a few goldfish in when she is nauseous will make her stomach settle enough to eat something more. As we go along we figure out all sorts of little tricks, and now we are working on a new menu line up. She seems to want to eat more and more solid foods, and finding variety has proven to be hard without some planning. So, we have some items that we're planning on making, and I'm kind of excited about her new food repertoire. I'll post more when I've made some. I think maybe I'll post successful recipes too.

Summer Fun

2011-08-27T18:09:00.000-07:00

We have managed to get a few fun, summery things in this year, even with all the extra hospital time. We took a short canoe trip down the street from the house. It was short because we got stuck between two beaver dams (oops!) but for a first trip for Saoirse, it went well. She wasn’t too sure about the life vest, it is pretty much the size of her, and makes it pretty uncomfortable to sit. I ended up having to hold her in my lap, but she liked that.

After we got out of the hospital from the mucositis, we went camping. We have been trying to go camping all summer, and it never seemed to work out, so we were very excited to go. We just went a few towns away, to Gloucester, and stayed at a really lovely campground. Saoirse loved playing in the dirt and running around. She wasn’t so sure about the tent at first, but when she figured out how to go in and out, she thought it was a fun game. For the most part we had a very smooth trip, but I’m not sure the other campers appreciated the 1am screaming at the top of her lungs. But other than the lack of sleep, things were great, and we can’t wait to take her again.

We have also been playing outside as much as possible when we are home. We have a few play structures in the yard (the neighbors were getting rid of them), and she loves climbing and sliding on the slides. She also has a swing in a tree that she loves. We have gone to the park a few times to meet the other babies, and that’s always fun, but I’m always leery of the germ thing on the play structures. The park has some animals though, and she loves watching the horses and the sheep. Saoirse loves playing outside, and usually gets her hat and brings me my shoes, before rushing to the back door in the morning. She even pulled me out in the rain one day and loved every minute!

The only thing that I feel we have been missing out on is swimming. Saoirse can’t be submerged because of her central line, and sadly she has a great affinity for the water. She gets quite upset when she is near water and can’t play in it. Even bath time is hard because she just wants to splash and play and we have to keep her from getting too wet. Normally we would have spent a lot of time at the quarry this summer, but we have only been a couple of times, because it’s hard to keep her out of the water. We made the mistake of going to the beach one day. I thought she would like playing in the sand and that it would distract her from the water, but she really wanted to go into the ocean, and wasn’t too interested in the sand. So total flop, but there’s next year. We’ll have to find an indoor pool somewhere once her line comes out so she can learn how to swim.

Even though we haven’t been able to have quite as many adventures this summer as we could have, Saoirse has still been able to experience a lot of what summer has to offer. I’m sure we’ll even add some more before the summer is over, and then comes the lovely fall – when it’s nicer to be outside because it isn’t so hot!

Things....

2011-08-18T17:43:00.000-07:00

Things that don’t happen when you are battling cancer…

Weeding the garden

Picking vegetables before they are overgrown

Mowing the whole lawn

Watering the plants

Vacuuming the house

Washing the dog

Painting the fence

Food shopping before running out of food

Painting the house

Organizing the office (or anything else for that matter)

Miscellaneous home repairs/improvements

Laundry

Date night

Sleeping through the night

Things that happen every day when you are battling cancer…

Love

Hugs

Love

Kisses

Love

Laughing

Love

The Mom Card was Pulled

2011-08-14T19:05:00.000-07:00

It has been a long week, ended with an even longer day. We went into the ER with Saoirse on Tuesday night, and were admitted because of her fever. She was started on antibiotics and some pain medicine. I was so frustrated that I went home, and Mike stayed with her. I had spent the night before at the ER, and I really was just spent - and still breaking out in hives. On Wednesday we regrouped with the doctors, although by then Mike was so exhausted, it was hard to stay focused. She received a blood transfusion and was started on morphine for the suspected mucositis, and blood cultures were taken to see if she had any bacterial infection. She was also started on prophylactic antibiotics. She was just miserably in pain. The mucositis was not visible in her mouth, but they could tell just by how she was acting that it was farther down her throat. I could tell she was hungary, but she just wouldn't eat or swallow.
Although her cultures were not growing anything, Saoirse was still spiking fevers. The doctors weren't too concerned that it was anything other than the mucositis, but it was still hard to see her with so much pain and not much we could do to fix it. The only thing they do for mucositis is to let her heal herself as her counts rebound, and give her morphine for pain. When the counts start to rise, they will go to her mucus membranes first to work on healing the inflammation and sores.
The next few days were spent with fevers spiking farther apart, and with a morphine pump to control her pain. She actually started eating some and drinking lots. And she was back to being playful. Constipation is a battle with morphine, so we tried to stay on top of it, but it was hard to balance all the meds. By Friday she was feeling quite well, and we even were able to take her outside for a little play time in the garden. We were hopeful that she would be going home the next day. Friday night was horrible. She was uncomfortable, so I had the nurse push her morphine pump to give her a little boost. At 1 she was woken up by vitals and wouldn't go back to sleep. She dozed a bit in my arms, but didn't want to lie in her crib. I had her morphine button hit a couple times, and finally some Benadryl to try and get some sleep, but it didn't last long. She was up again at 6:30. Turns out that what was bothering her was more the constipation, which the morphine was only worsening. We gave her some meds to help, and just had to wait for them to work. So after no sleep, and being constipated all night and morning, we were really looking forward to going home. She hadn't had a fever in over 36 hours, and she was happy and eating, albeit cranky and tired. Then, she all of a sudden went up to a 38 degree C temperature and threatened our chances of going home. On top of it, we had been moved out of our room (we were in a private, and there was a transplant patient coming over), and were in no-mans-land of a room because we were expected to be out of there. It was so frustrating. We couldn't get any peace and we were stuck.
I just felt that the temperature was a fluke. Once she finally pooped, she was happy and playing and wanting to run around. She wasn't showing signs of feeling bad, and I was convinced that all she needed was a good night's sleep. We talked to the doctors, and after some hemming and hawing and a few tears, we agreed to see where she was after a nap and a couple hours. More waiting and more limbo. Of course I wanted to take her home no matter what, but Mike was going to make sure that we did what was best for her. Even though she was woken up from her nap, her temp did go down on it's own - it was 37.6 when she woke up. She played and Mike talked to the doctors. They still were leaning towards keeping her overnight to make sure that she was ok, but I still felt that what she really needed was a good night of uninterrupted sleep to start healing, and she wasn't going to get that in the hospital. The doctors agreed to send us home as long as her temp was still going down in an hour (it took that long for prescriptions and discharge anyway), and that we had to watch her like crazy to make sure she didn't show any signs of any kind of infection. I knew it was the best for her, and her temp was down to 37.2 in an hour, and we were on our way out the door. Of course they sent us away with tons of antibiotics and medicines for prevention of any infections, but I was much happier to do that and get her some rest, than to stay another sleepless night.
Saoirse was thrilled to go home. She said bye to all the doctors, and we went on our way. She napped in the car, and we got home in time for some outside play before bed. She was happy and laughing, and other than getting her to take her medicine, it was an easy night. We checked her temp, still around 99 F, before bed, and she conked out! I checked her temp a couple hours later, still going down, and we went to bed. She did wake up when Mike went in to check her temp at 3, but she dozed for a bit, and was up for good around 5 (I'm pretty sure she was just really hungary by then). The good news - her temp was back to normal, and she was eating and drinking better than she had in days. This time, normalcy was the best medicine, and some dog loving. I trust the doctors and their judgement, but sometimes Mom still knows best.

Mysterious Ailments

2011-08-11T17:46:00.000-07:00

As much as I was hoping to stay out of the ER Monday night, I wasn't so lucky. The hives crept onto my face, and I was forced to go into Beverly Hospital so that my reaction wouldn't get more serious. Thankfully they weren't too busy, and after a Benadryl injection and a dose of Prednizone, I was on my way home to bed. I'm still not sure what is causing the hives (although stress has been making them worse), but they seem to be slowly subsiding. I just hope they are gone completely by the end of the week and that they don't decide to pop up again.
Adding to my stress, and my hives, is the fact that Saoirse is back at the hospital this week. Tuesday night she spiked a high fever, and we had to bring her into the ER. She got a dose of antibiotic and they did blood cultures, but because her counts were so low, we had to stay. It was good that we did, because her temperature spiked a couple more times. We also found out that she has a moderate case of mucusitis. This is the most uncomfortable I've seen her since before she was diagnosed. This is one thing that I never experienced, so I just feel horrible that I don't know how to better help her. I have heard that it feels like a sunburn in your throat - if that is truly accurate, I can't imagine how she is even able to eat anything. She is on morphine for the pain, and we just have to sit and wait for her counts to come up and her body to heal itself. Luckily, her counts have started to rise already, and we have seen a great improvement today. Although we don't have a perfect answer for the fevers (they could be from the mucusitis), they are starting to space farther and farther apart, and come down faster with the Tylenol. She had a nice long nap this morning, and then a much more playful afternoon, so we know she is starting to feel better. She is on a pain maintenance pump tonight, so hopefully she will get a good night's sleep, and feel even better tomorrow. With her counts on the rise, she should start healing herself, and hopefully we can come home soon. I just hate seeing her in pain. We have been so lucky so far with side effects not being too horrible, and this is just not fun for any of us, especially Saoirse. We will definitely be working with her doctors the next time she gets this chemo regimen to try and stave off the mucusitis by encouraging her white cell growth more right after chemo. I've been told this isn't usually done because of the higher likelihood of bone pain, but she has been on double "G" before, and the bone pain is much more easily managed, and she is much less miserable. I just can't see her going through this again if it can be avoided. I just hope the doctors will be one the same page. At lest we have a while before this regimen comes up again. Now, we just have to keep her comfortable, try and get her to eat some, and wait for her body to perform it's own magic. Thank goodness she won't remember this later.

Energy and Itching

2011-08-08T17:43:00.000-07:00

Saoirse had a great hospital stay. She took on this chemo like a champ, and was her usual fun loving self the whole time. She even made two lovely paintings in the play room, and did a nice job of decorating herself in the process. The pictures are now hanging on our fridge in the kitchen.

While we were in the hospital, we had a meeting with a woman from the innovations department, and the writer of the VECTOR blog. We are working on developing a product to help patients and parents better care for the external lines that many of the oncology patients have. We are hoping the innovations department can help us make some connections with people who can help us develop the product and business, and set us in the right direction for getting the mass produced. We also hope that an article in the VECTOR blog will help us get some exposure once we are up and running. This product has helped us so much while caring for Saoirse's lines, and the patients and parents that have tested them for us, as well as all our doctors and nurses, love them too. This could really help a lot of people, and we are really looking forward to developing a business that we are passionate about.

I was finally starting to feel better this week. I even had the energy to walk the dog one morning, and walk around Rockport and swim at the quarry another day. Then, out of nowhere, I broke out in hives. I had a huge patch on my lower back last night, and they were quite itchy, but not terrible. I took a couple Benadryls, and when I woke up the ones on my back were pretty much gone, but they had spread to my legs. I kept taking the pills, but over the day it has gotten progressively worse. At this point, I'm just hoping to get through the night and morning without having to go to the ER so I can go to my regular doctor tomorrow. Arg - if it's not one thing it's another. They are just so darn itchy! And, I have no idea what's causing them. Gotta love new mysteries. I didn't have anything else to do this week anyway. Hopefully they will be gone by tomorrow so we can go camping later this week!

Cookouts and Chemo 4

2011-08-02T17:43:00.000-07:00

The past couple weeks have been great. Saoirse is doing really well, and even went a whole week without any nausea meds no problem! I think it even helped her go back to sleeping 12 hours a night (which makes her AND us very happy indeed)! On top of that, I'm finally starting to feel better after being so wiped out for so long. I think I can finally see the end of the tunnel, and I can't wait to start feeling more normal.
To celebrate my remission and Saoirse's first birthday, we had some friends over for a backyard BBQ. Mike was very excited to smoke some pork and some ribs, and I was glad that many of our friends and family could come and celebrate with us. It was such a nice day! We set up the back yard and everyone enjoyed the shade and great food and fun. My Nana was even able to join us for awhile. It was the first time that she had been out since she had broken her leg a couple of months ago. She was so excited to be out and about, and to see everyone as well. Saoirse had a great time running around and playing with one of her friends and the girls next door. She has really come to love playing outside, and it was nice to have her out of the house all day. Sadly, only one of her baby friends was able to join us. A couple had other commitments, and a couple had gotten live vaccinations during the prior week, and we both have to avoid live vaccines because we have no immunities. But, we will be sure to celebrate with them soon. Over all, the party was a nice hurrah before we had to take Saoirse back into the hospital for chemo number 4.
Monday we went into the Jimmy Fund for our doctor's appointment and to start the next cycle of chemo. I had called last week to make sure that we were all set to be admitted when we go there, and they said we were all set. I had thought that this cycle was the same as the last, but we found out that this one is different drugs. We also found out that we could not start the drugs in the clinic because one runs for 3 continuous days (a full 24 hours for each of the 3 doses!), and they can't transfer her over to the hospital with drugs running. So we waited for our bed, which we didn't get until 2, and then waited another two hours to even be seen by the doctor so she could be admitted and start the chemo. After everything, she didn't start her premeds until 5 pm! We were very frustrated. Why did we have to get there at 9 am when we weren't going to be doing anything until 5! We made our frustrations known, and were able to talk to the doctors about not letting this happen again. As it was explained to me, there was a miscommunication at the hospital about our admission and they didn't know we were coming, so they didn't have the room ready. This is just amazingly frustrating considering that I called the clinic last week to be SURE that our admission was all set up (especially after the last time when we didn't go in until a day after we thought). Sadly, there was nothing we could do about it then, but the doctors have assured us that they will make every effort to start her chemo earlier when she has these drugs again in cycle number 6 (cycle 5 is the same as cycle 3).
Saoirse is doing amazingly well with this cycle so far (granted, we are only in reality 1 day in because everything started so late). She woke up hungary this morning, which means she wasn't experiencing too much nausea. She ate a lot of good food today, including waffles and cherries and lots of milk (another good sign, as milk is usually the first thing she won't drink when she's nauseous). She even took a two hour nap in the afternoon! The one difficult part is that she is attached to the pole all the time. This particular one runs through two pumps at once, so the pole is very large and awkward. If she would sit in her crib, or on the floor and play in one spot, this would be easier to manage. However, she is an energetic one-year-old, and doesn't like to sit still much at all. Chasing her with the pole and trying to keep her from getting tangled in three tubes attached to her is a feat in itself. I think it's probably more exhausting for the one doing the chasing than it is for her (sad, because it would be good to tire her out!). But it's only for three days, and then she will be home and happy to be here. Hopefully tomorrow will be as good a day as today.

Remission...

2011-07-26T19:45:00.000-07:00

I had my last chemo treatment on Friday. It’s hard to believe, but I’m done. Today for the first time I officially used the phrase “I had Hodgkin’s Disease.” In reality, I’ve been in remission since I had negative scans four months ago, but I felt like because I was still in treatment, it wasn’t real. Now I have no excuses; I’m officially no longer a cancer patient. It’s a little surreal actually. You would think that I would be jumping for joy, but I feel kind of like the battle is only half won. When I started treatment I knew everything would be over and done with in six months, and then we could get back to our normal life. But with the baby now going through her own treatments, our dreams of normal are still far off in the distance. For one, I still have recuperating to do, as even the last chemo comes with all the side effects, and I won’t be back to my normal self for quite some time as my body still works on healing itself. I still have no energy, and I’m not sleeping well, but hopefully my body will start to pick back up when I don’t go in to knock it down with chemicals in two weeks. I guess I just can’t wait to start feeling better; I’m ready to be done for good. Having my eyebrows back would be nice too; a face seems naked with no eyebrows.

Of course the last chemo has to be the one that causes problems. Since we had gone on our little mini vacation earlier in the week, I had skipped my doctor’s appointment and had to go in early on Friday for my pre-chemo check. Once I left there, I went up to Addison Gilbert Hospital to get started on my last “spa” day. Of course, because it’s the last one, I have to start off with port problems – no blood draw. Chris put me in all sorts of crazy positions to try and open up a channel, but to no avail (although I offered to stand on my head, which she didn’t have me do). She said most likely that there was a little fibrous flap over the end of the catheter, and put an enzyme into my port to work it’s magic and loosen it up. So after about an hour of waiting, and a couple of unsuccessful tries, blood finally started flowing, and I was able to get going. Luckily they were able to get it going, because if they had to put it through my arm, it would have added about 4 hours to the ordeal. I got some nice flowers though. My friend Emily sent me a beautiful orchid, and the research nurse, Lisa, brought up some beautiful gerbera daisies. Now I will say, it’s not cake (although, to my surprise, my craving for pumpkin bread was met in a wonderful way) but I did appreciate the flowers.

I’ve been feeling a bit out of sorts lately. I think I’m just feeling a little overwhelmed with everything going on. Even though it frees up some time every two weeks, being done with chemo is a routine change, and it’s always been hard for me to change routines. Plus, with the work we are doing on fundraising to help with bills, and the development of the products we are working on, I feel like there are not enough hours in the day to get everything done. I am glad that we have been able to get outside and do some things as a family. With the nice weather, it has been easier to get out; although, because Saoirse can’t swim, we are a bit limited on summer fun. But, there are other things to do, and she can get her feet wet, it’s just a matter of keeping the rest of her out of the water (hard to do with a 1 year old who really loves to splash). I just keep telling myself that it’s only a little while longer, and that next year, this will all be behind us and she’ll be able to swim all she wants.

Mini Vacations and Celebrations

2011-07-22T19:14:00.000-07:00

With everything that we have going on, a calendar of commitments that looks like we're a family of 6, we haven't had much quality do-nothing-else family time. So when my parents went away for their much needed week in the Berkshires, we were glad to see them get away, but a little bit jealous that we couldn't do the same type thing. They suggested us coming out for an overnight if Saoirse's labs were looking good, and she was feeling good, at the beginning of the week. This sounded like the perfect opportunity for a quick getaway. Of course, taking an active pediatric oncology patient out to the Berkshires takes some coordination, some research, and a lot of packing. I think we packed more medications than we did clothing! We also had to look up and see if there was a hospital with a pediatric oncology unit within an hours drive of the condo, just in case she spiked a fever (Springfield has a children's hospital with pedi oncology under 50 miles from Lee). So check, and check, now all we had to do was wait for her labs to come back monday afternoon to make sure that white counts were looking ok, and to make sure that her hemoglobin wasn't so low that she would need a transfusion right away. We got the call at about 4 in the afternoon, and although her hemoglobin was a bit low, she wasn't going to need a transfusion until Friday or so. So we went for it! It was a little nerve wracking to take her on such a long road trip when she had been having trouble with carsickness, but we coordinated it with an early afternoon nap, and she slept for almost the whole ride. The place they were staying was really nice. The condo was a 2 bedroom 2 bath unit, with a kitchen, and in a nice wooded area. It even had a pool so we could take a quick dip to cool off at night. We did some touring around, and ate some really good food. We even got to see the work of two famous artists while we were there - we went to the Norman Rockwell Museum and Studio, which was awesome, and we saw works by Dale Chihuly in a gallery in Stockbridge, which was amazing. Of course, the Norman Rockwell Museum houses his Saturday Evening Post covers, but it was even more amazing to see the original paintings that his published illustrations came from. I didn't realize how big they would be, although I'm not sure why. The detail was amazing in the paintings. The museum even had a little bit about animation and the Ice Age and Rio characters featured to show how the digital animation process works. It was neat to see that they still use so many analogue elements before converting things to digital output. Saoirse liked the short episodes that they were playing on a big screen TV. it was a good way to keep her occupied, as she wasn't very interested in looking at paintings. At least it kept her from screaming and terrorizing the gift shop for a sort period of time. The Chihuly gallery looking was more for us. I have always liked his work, and even though it's been showing at the MFA for three months now, and we're down the street when we're at Children's, we still haven't managed to get over there to see the exhibit. His work is so amazing, and they had a few large and really nice pieces that were very nice to look at. They also had some of his paintings, which I hadn't realized that he did. (On a special note, this gallery has no idea how to frame things. They have mostly glass sculpture, but the few 2 dimensional pieces were in horrible frames.) But even with horrible framing, the paintings were very cool, abstract pieces, with tons of color and movement. So awesome to see. After a refreshing nap for the baby and me (and a nice dip in the pool for everyone else), we packed ourselves up a nice picnic dinner, and went over to Jacob's Pillow for the free performance. It was great to finally see the Pillow for the first time. My sister has danced there, and my parents have been going there for performances for years, but I had never gotten to go along. The campus is amazing, so much to see and so many dance spaces. I can't wait for next summer when we can go and spend some more time there and see some more of the performances, lectures and exhibits. After a great performance, we headed home. The baby slept in the car, and stayed asleep when we put her in bed. The next day we woke up and the vacation was over. With blood work for me in the morning, and a blood transfusion for the baby in the afternoon, we were back to our "normal," crazy doctor's appointments. But at least, for just a couple days, we were able to forget (mostly) about being patients, and focus on being a family.
This week was my last Chemo treatment! It's very exciting. The only problem with it being the last chemo, is that everyone wants to celebrate and I still have to feel crappy for 3 days. But we will be celebrating soon. Now that my treatment is over, I have some mixed emotions. I have the benefit of having already had a negative PET scan, so most likely nothing has changed, but I do still have to wait over a month to have my new scans done so that the medicines don't show up and give any false readings. So there's a little bit of waiting to get full confirmation, but again, because the last ones were all negative, the doctor is not expecting any surprises. I just can't wait until I can eat sushi! I still have some time to wait on that one, but I will be going out for some awesome raw fish as soon as I can. There's still a lot of follow up, but at least I don't have to have my energy knocked down every 2 weeks, and I can finally have every other weekend back! What ever shall I do with all my time? Maybe I'll finally get to organize the house!

Chemo and Cameras

2011-07-21T19:08:00.000-07:00

So after a busy week, we went into the Jimmy Fund last Tuesday for a bone marrow biopsy and to start Saoirse's next round of chemo, for which she was admitted to Children's for 4 days. This round was new drugs, so we were not sure how she was going to react to it and what kind of side effects she would experience. I think that's the hardest part of her protocol; it changes drugs often, so just when you think you have a post-chemo routine down, you have a new one to learn. This is especially hard with a one year old, because she can't tell you when she's in pain or starting to get nauseous, you just have to go with trial and error. Saoirse handled the chemo quite well. She did end up throwing up a couple of times while we were in the hospital, but she picked herself right up and kept on going. She even had a couple of really good meals, gobbling up food like it was a normal day. After 4 days in the hospital (two drugs for 3 days, and only one of them on the 4th), we went home late friday night. This chemo comes with 12 hours of hydration after the drugs are administered, which is one of the reasons that it is done inpatient (with an hour of premeds, three hours of chemo, and then the 12 hours of hydration, it's a 16 hour process in the end). She was given a lot of anti-nausea drugs during the hospital stay, and the nurses warned us that one of the drugs (cysplatin) is known for delayed onset of nausea. The nurses suggested staying on top of the nausea meds when we got home, and to be aware that it may take longer for her to get back to normal.
Once we got home, we had quite the busy schedule planned for the next few days, which may or may not have been good for Saoirse. The fundraiser basketball tournament that our friends planned was on Saturday morning, and because Saoirse seemed to be feeling quite well, we took her down and ended up having a ball! It was so great to see how many people came out to support us. The tournament was amazing (Saoirse loved watching them play), and it was great to see family and friends that came out for the day. After the fundraiser, we went to see some friends before they moved to Arizona. I have been trying to get down to see them since April when she had her little baby boy, but with all the treatments going on, I had never gotten the chance (even though they live less than 3 miles from Children's). It was great to catch up with them before they left. On the way home, we realized that we were a bit late on one of Saoirse's anti-nausea meds, but it was too late to save the ride home. We spent the whole ride stopping every eight miles or so to sit her up and catch her vomit. The motion of the car just put her over the edge. So we managed to get home, but it was quite the stress full ride. We calmed her down, got her medication into her slowly, and let her stomach settle. Once all the meds settled in, she was back to herself and running around playing. After a couple of days keeping up with her meds, we felt like she was starting to intake more food and drink more and start to get back to normal. We are still staying on top of her meds, but she is definitely feeling more like herself I think.
The other big events of last week included two TV spots on local news channels. Mike has been doing some media marketing of our story to try and help us bring people to some of our fundraisers, and to promote awareness for our diseases. Mike contacted most of the local news stations, and channel 5 and channel 7 both wanted to do spots about our story. It was a bit nerve racking to be interviewed for TV, but in the end it wasn't so bad. All we had to do was share what we are going through, and let them do the rest. Saoirse, of course, stole the show, being cute as ever, signing "thank you" to the camera for the channel 5 news. We eagerly awaited the newscasts, and it was otherworldly to see ourselves on TV. All the nurses came by and told us how wonderful Saoirse was, and we were amazed with the response from complete strangers. We really appreciate the support that has come pouring in since the shows aired, and are surprised that so many people offered up their support and well wishes. I think sometimes I forget how unique our situation really is, as we have become so used to what we are living, and sometimes it takes complete strangers to remind me that it's not every day that two people in the same immediate family battle cancer at the same time.
[If you would like to see the TV interviews click the following links:
Mom, Baby Both Battling Cancer
Special Report - Danvers family battles cancer twice]

Cancer is a Full Time Job

2011-07-13T17:45:00.000-07:00

This week has been crazy. Sometimes I feel like I'm running around like a chicken with my head cut off, and it always seems like I'm not making any progress. After a good stem cell collection with apheresis, Saoirse had Wednesday off, so we spent some time catching up with some friends. It's always nice when we can take a little bit of a relaxed day to do something nice for ourselves. I, of course, had doctors appointments in the morning, but managed to get through those without too much trouble (although I sometimes get frustrated with my oncologist because if she doesn't think the symptom is related to the chemo or the cancer, she sometimes glosses over it without any acknowledgment of whether or not I should do anything about it).
Thursday we went into Children's to have Saoirse injected with the radioactive marker for her MIBG scan. Sadly, when the secretary called me and told me her appointment times, they forgot to remind me that she needed to take her potassium iodide drops the day before and morning of the injection. They were able to give her a drop there, but they then had to wait a whole hour before they could give her the marker. This was totally frustrating to me, especially since 1) I had the medicine at home and could have given it to her if they reminded me, and 2) I had already been waiting there an hour since they were running late for her appointment. So, rather than getting in and out, we were there for most of the late morning and early afternoon. (Like I didn't have anything else to do with my day or anything.)
Friday was the big day - Chemo day for me (second to last!), and scan day for Saoirse. Mike took Saoirse to Boston and she did a great job with her scans. She made it through her MIBG with only a little bit of crying at the end (when they had to hold her head still), and she slept through her CT so they didn't have to sedate her! Mike was so proud of her. She is such a great little trooper. I had my chemo, and I used the time to catch up on some crocheting, and some "work" on fundraising and such. Recently I feel like I've been spending more time on the computer, updating this and that, than I have doing things with my family. Sometimes I feel like everything blurs together and I never get any clear family time. Still, it's hard to believe that I only have to go one more time. It's become such a routine. Imagine what I'm can to do with all this extra time on Fridays!
Saturday was spent resting. These last few chemos have really knocked me down. I really have absolutely no extra energy, and chasing a now walking and adventurous baby around takes its toll very quickly. Luckily Mike and my family have been able to pick up some of my slack. The house is atrocious, and the porch is filled with random stuff, but we just have to overlook it. There are days when I think that if I could just get the house organized and put everything away, life would feel less chaotic, but I get one room done, and it isn't long before another room is a disaster (plus, I'm pretty sure that's not why my life feels chaotic right now). Someday everything will have a place and everything will be put away, but until then, we'll live with the piles of stuff and the seemingly endless, moving "office" that has taken over the house.
Sunday - my day. Since we were originally scheduled to go into Children's for chemo on Monday (my actual birthday), we decided to do fun birthday things on Sunday. After a nice and restful morning, we went into Rockport to go swimming and to have dinner. We even tried a new restaurant (well, new to us, it's been there forever) which was really good - Ellen's Harborside. We took the baby in the water (I sealed her up with tegaderms) and she had a blast, but we got yelled at by her doctors, so I guess we won't be doing that again. (I understand the infection risk, but I promise, she was so sealed up not a drop got in!) I guess it's just wading for her from now on. Too bad it's so stinkin' hot!
After all the whooplah, and business, we were all set to be admitted on Monday for Saoirse's chemo. We went into Jimmy Fund for labs and her doctor's appointment, and then found out that not only was she not being admitted for chemo that day, but that she also had a bone marrow biopsy the next morning. Now I knew they were going to do the bone marrow biopsy, but I didn't realize they had to do it before the round of chemo, and when the schedule got changed, no one ever called us to tell us. Super frustrating, not because we went down for no reason (we would have had to go down either way), but because we lugged all sorts of stuff with us and parked in the children's garage a block away because we were sure we were going to be leaving from there. Ahh well; it meant that we got to come home and I got to have my birthday ice cream cake actually on my birthday! What a nice birthday surprise. We even got some play-with-the-neighbor-girls time in, and Saoirse always loves that (and so do they)! So now for the chemo and the never ending job of keeping a one-year-old entertained while she's attached to a pump and giant pole for 5 hours. I didn't want to sit down anyways; that would be boring. Bring it on!

Festivals and Fundraisers.

2011-07-06T19:45:00.000-07:00

Even with the crazy schedule this week, we have managed to keep a pretty normal routine going and have some good old fashioned family fun around town. Danvers has a family festival that runs for a full week ending with the 4th of July festivities. We went to a few of these events including a concert and hot dog dinner, a street fair downtown, a ham and bean supper, and the horribles parade. It was so much fun, and Saoirse enjoyed every minute.
Saoirse has many appointments scheduled, as her progress is being evaluated between cycles 2 and 3 of her chemo. She also had her apheresis appointment to collect her stem cells to be used for her bone marrow transplant. To prepare for the procedure, we injected Saoirse with double her normal dose of her white cell boosting medicine to encourage extra white cell production. She did ok with this, although she had more bone pain and had to take pain medicine more frequently. Last Friday we went into clinic to meet with the apheresis coordinator and find out exactly what was going to happen. She explained what the procedure would be (she would be hooked up to a machine that pumps her blood out, separates out white cells, and pumps the rest back in), and what she needed to achieve in her labs so that we could start collecting. There are so many numbers involved, it's hard to remember what everything was, but they were checking her labs frequently and would let us know when she was ready for collection. After a busy holiday weekend, we found out Monday that she was ready for her collection. We were scheduled to go in Tuesday morning for an all day process. The morning would be labs, and the afternoon would be the collection. It was a long day, but we managed to get through it. My mum and I battled to keep Saoirse entertained as she had to be hooked up to a very large machine for four and a half hours in the afternoon. This is the biggest challenge of the process. A one year old doesn't understand that she has to stay in bed because she's connected to a machine. She just understands that she's bored and wants to go somewhere else. It took a lot of books and toys and some singing, but we managed to keep her entertained for most of the afternoon. They were even able to collect enough cells in that one session, so we didn't have to go back for a second round. This was great, as I wasn't sure what we were going to do to entertain her on a second day.
Friday Saoirse is going to be scanned again to see what the progress looks like inside. We know her tumors have been shrinking, as she has much less swelling and her belly is not as distended, but we won't know exactly how much has improved until we see what's going on on the inside. It's a little nerve racking waiting for the results, but the wait will be worth it. I will keep you all posted with the results of all Saoirse's tests, and with her progress.
Next Monday we will be her next round of chemo. This cycle has to be inpatient as they have to monitor how she responds to the new drugs. Luckily, it is only a 3 day cycle. Hopefully she will respond well and we won't have to stay later into the week. It would be nice if she could come home right away so we can do some more fun summery things.
In addition to the doctor appointments, we have a full social schedule as well. Last week we spent a lot of time at festivals, and family and friend's barbecues. This week we have play dates, a birthday party, and my birthday to celebrate. Next week we have a going away party for some friends, and a second fundraiser event that my best friend has coordinated for us. The first annual HOOPS TO HELP charity basketball tournament and picnic is being held in Arlington, MA and will be a day of great fun. We really appreciate all the help and the love that we are receiving from friends, family and even perfect strangers. It's amazing the outpouring of support we have experienced. We are truly in awe. (For more info on the event look here: https://www.facebook.com/event.php?eid=234708189889959)
We have also set up a donation page for our family through FirstGiving and the Ishan Gala Foundation. This page will accept credit card donations of any size, and since it is through a not for profit organization, is completely tax deductible. The money is collected by the foundation, and we are reimbursed for living and medical expenses while Saoirse is going through treatment. The Gala foundation has been truly wonderful with us, awarding us a $1000 dollar grant to help with our expenses. This site will also help to help us with the increasing cost of Saoirse's treatments. To see our page, look here: http://www.firstgiving.com/fundraiser/saoirsefitzgerald/saoirsefitzgeraldsfundraisingpage.
On my side of the fence, things are going well. I have two more treatments to go, and am very excited to be finishing up this chapter of my disease. Right after my last treatment, on July 22nd, I will be rescanned to make sure that the cancer is gone. It will be tense waiting for the test results, but I should not have to wait long, as I will be rescanned around the 25th, and will be receiving the results on the 27th. I'm sure it will be a long few days though. Hopefully I'll find something to keep me busy. The thing I'm looking forward to the most? - a celebratory sushi dinner! I can't wait!

A Great End to a Long Week

2011-06-25T19:03:00.000-07:00

After a long week of chemo, things are going back to normal. Saoirse is as happy as ever, playing and laughing and walking more and more. My treatment went well, and other than being tired, I'm feeling pretty good. The next couple of weeks are a bit crazy. Saoirse is being prepped for her stem cell harvest, so she's getting double her white cell boosting medicine. I'm hoping it doesn't cause her too much extra bone pain, but that's what we have to look out for. Next Friday she will have an evaluation by someone from the collection team, and then she will have the harvest one or two days after the 4th of July. The only thing I think that will be a challenge for her harvest is keeping her confined to a crib for hours while keeping her entertained. It may take some creative planning and a lot of dancing and singing, but I'm sure we'll get it done. After her collection she has more scans to see how her tumors are shrinking and another bone marrow biopsy to see if there is any change. It will be nice to see how much improvement there is inside to compare to what we're seeing outside. The doctors are really happy with her appearance, so we're hoping that transfers to what we see on the scans. It's hard to wait for all the results, but there's nothing we can do about that.
In other news, I'm still in an awful battle with the pharmacy that supplies our white cell medicine. I haven't been able to get my prescription correctly yet from them, and currently they are denying that they owe me the rest of my medicine from the last shipment. Currently I'm pretty sure that they took information from Saoirse's file and transposed it onto mine, making it so that I can't get my medicine on time. I've been trying for weeks now to get it straightened out, but they are refusing to admit that they made an error and are blaming my doctor's office for the mistake (I have talked to my doctors office who say that none of their paperwork shows the "21" day cycle note that curascript says it has on the original prescription). I'm pretty sure that Curascript called Saoirse's doctors to find out a cycle duration by mistake and fouled up my whole account. I just want my 5 vials of medicine without paying for them again! I just can't believe how many time's I've had to call and talk to these people. Their customer service is horrible. I just hope I can get it figured out by the time I need my meds. I just don't need the extra frustration right now.
Hopefully the weather will start getting nice again this week so we can do some fun things outside. It's so much fun to see her explore the world outside. I think it helps when she spends as much time outside when she can, since she'll be cooped up inside for many of her treatments and tests. She loves the outside, so I want her to be able to get out there as much as possible.

Happy Times

2011-06-20T19:08:00.000-07:00

It's been a while since my last post, but that's because we've been having so much darn fun. Now that the weather is nicer, we have been spending a lot of time outside. Saoirse really loves her swing, and she has gotten used to the grass. She even picks "flowers" when she's walking around the yard and give them to me. We have done some fun things with friends - park days, sprinkler days, birthday parties and good old fashioned play dates. It's been great to see her playing with other babies. When there are a lot of people, she's still not sure of herself completely and tends to hang by me, but with two or three babies she's perfectly content (as long as I'm in eye shot). It's nice that they play more on their own too, because it means us moms can get in some much needed adult chatting (you can only discuss what sounds animals make so many times before you start thinking you're a monkey). Saoirse even started walking on her own!!! We've been trying to get her to take some steps on her own for weeks now, but she wouldn't budge without holding on. But the other day, we just plopped her in the middle of my parents' living room, Mike demonstrated nicely, and she started moving those feet. She was quite proud of herself; she clapped. It was so exciting, and I managed to get it on video! Today she's been practicing a lot. She's starting to really get the hang of it. We're probably going to have a runner on our hands in no time at all.
Saoirse had her first of five days of chemo today. The doctors think she's doing great. The only tough thing about chemo at the clinic is that she wants to run around and play. It's hard to keep her corralled in her crib and entertain her when she just wants to be up and moving. A squirmy one year old is even harder to keep on your lap. She did great though. She played, and ate, and even took a nap. Tomorrow should be a much shorter day because we don't have to have a dressing change and doctor evaluations. We just have to go in, do vitals and start up the premeds. I'm hoping to be out of there soon after lunch time. So far I'm liking having it done as an outpatient. It's nicer than having to be stuck in the hospital. She even got to play out side and go for a ride in the stroller when we got home. Too bad this may be the last time we are able to do this (it will depend on how she reacts to some of the other drugs). After this cycle, we will be doing lots of trips for other things. Saoirse will be having her stem cells harvested, which means a couple trips to Children's and the art of keeping her entertained when she has to be sitting "still." She is also having her scans redone, so hopefully we will be able to see the improvement on the inside that we're seeing on the outside. I'm really looking forward to finding out the results and seeing how the doctors think she's doing. She seems like she's doing so well - she's back to looking like herself, and more importantly acting like herself. I have my happy go lucky, friendly, giggling baby back, and I'm loving it!
In other news, in an effort to make my life easier, I decided to get an iPhone. This has, so far, only caused me distress as I have to try and update my computer so that I can actually use it as intended and sync it with the files on my computer. The updating process has become a total hassle as I have to find an outdated software, try and back up my computer to drives that are dying, and ended up having a panic attack that I was going to loose all of our photos of the baby and our wedding and everything else before that to a dead drive that was simply a problem with the power in our house (we have really old wiring everywhere except the baby's room. That was our savior yesterday, as I sat on her floor and loaded files onto a new drive). I'm hoping that once all the ridiculous updating is done, I will finally be able to use this tool as I intended to, and hopefully it will be worth the hassle. Sometimes I hate technology.

A busy and fabulous week

2011-06-09T18:44:00.000-07:00

This week has been a great one. Saoirse has been really doing well. She is walking all over the place (still with help, she won't take a step without holding yet, but she's close). She's loving the outdoors, and loving socializing with other babies and kids. She's been so happy, and we are loving hearing her laugh every day, all day! Now that she's feeling better, we are going on more play dates, and she is really starting to socialize rather than just sit. She's also really starting to communicate with us which is so much fun. When she gets going she tells the most "interesting" stories, babbling on like we know exactly what she's talking about. But when she wants something she's now starting to point, nod, and sometimes sign. Also, she recognizes things when you ask or tell her something. And she is loving music! When we were at clinic on monday they gave her a little birthday gift - a music set including a drum and drumsticks, bells, tambourine, and rattle. She loves it! she shakes and bangs and dances along. The dancing is so fun, and whenever we put music on she bounces along and "conducts" the music with her arms.

One thing I did for myself this week was to put some art in a local show. The Essex County Greenbelt Association holds an annual art show and sale called Art in the Barn. Last year I managed to show, even though I didn't attend because I had just had the baby. This year, with everything going on, I was not very on top of my submissions, and I considered dropping out. However, I forced myself to get things together and to drop off my artwork (even though it got there a day late). Mike and I left Saoirse with the neighbors tonight so we could go to the opening (the girls were very excited to have Saoirse as a playmate for the evening). Not only was it nice to get out and see some wonderful artwork, but I felt like I was doing something that was just for me, and getting back into the art world a little bit. I even saw an old friend from the frame shop there and was able to catch up with her a bit. (We saw a fellow MacFarlane clan member too, clad in his kilt and sporen.) For anyone interested in viewing the show (which I highly recommend, and it's free!), it is held at the Cox Reservation, 82 Eastern Ave. in Essex, MA (Rt 133, right behind Farnham's clams - which I would recommend for lunch/dinner when you go). The art is amazing, and the site is beautiful. A wonderful afternoon. (For viewing hours, visit www.ecga.org)

Oh the Pain

2011-06-04T19:05:00.000-07:00

This week has had it's ups and downs, but over all it's been pretty good with just 3 exceptions.

The first had to do with some missed prescriptions. When I had my labs drawn last week, my ANC had dropped below 100. At this low level, my protocol would allow me (and suggest) that I go on Neupogen injections to raise my white cell count. This was fine, and I was prepared to have Mike or myself give me a shot for 6 days to bring up my counts. The first problem came because I was due to start on Monday, which was Memorial day, and therefor the oncology staff wasn't going to be there. This meant I had to go to Beverly Hospital to a regular patient floor and have a nurse there give me the first injection (the first one they observe you for an allergic reaction). This was frustrating for two reasons - 1: I had to drive to Beverly that morning and sit there when I could have been doing other things at the house while the baby was still at Children's. And 2: you never know what people have on a patient floor, so I had to be careful not to touch anything and wear a mask (which I just find annoying). But it was fine, and I got my shot, and no reactions, so I went on my way to pick up my prescriptions at CVS. Now, in reality, I should have known that I was going to have an issue because when we got Neupogen for the baby the people at Children's told us that Blue Cross only paid for it when it was mail ordered from a certain company in Florida. However, I didn't make the connection, and expected to pick it up at CVS along with the antibiotic that I was prescribed. Not only did they not have anything in the system, but since it was a holiday it took forever to try and get the prescriptions from the doctor on call (who wasn't my doctor). So after a lot of phone calls, and some searching, I was told it would be $300 to get one dose from CVS because BCBS doesn't cover it except for mail order (this is where the duh part came in). So now I'm screwed, and I have to drive into Boston to stay there overnight with Saoirse, and have no way to get my injection. So, I found out my dose and took a vile and syringe of the baby's from the house, and had it with me for Tuesday morning at the hospital. After calling the doctor's office in the morning and trying to get them to set everything up for me, I had the nurse at Children's inject me. So I was hoping I would have my meds delivered on Wednesday morning, because the doctor said the order was put in on Tuesday and I know the company overnights, but I called them and they said the order hadn't gone through yet and they were waiting for approval from the insurance. To make a long and frustrating story short, I spent all day making phone calls to them and the insurance company, only to find out that it took all day for them to process it, and that I would not get it until Friday morning. Needless to say, I'd now taken 3 of the baby's vials, and was so frustrated I couldn't talk about it any more. I did finally get the meds, but they ordered me pre-filled syringes which cost me more than if they had ordered me vials, and means that I can't replace the ones I used of Saoirse's so I have to order more for her now. Just a hugely frustrating ordeal that I didn't need to have with everything that's going on. For the next round I'll be sure that I get the right thing on time.

Frustration number two: the mysterious rash. Saoirse has her new Broviac central line, and they changed the dressing before we left the hospital. However, she managed to develop a bit of a rash around the dressing by wednesday night. We talked to the Jimmy fund, and they recommended getting some Benadryl and seeing if the rash improved before bringing her in (we suspect she's having an allergic reaction to either the dressing tegaderm itself, or the cleaning solution used at the dressing change). During the day on Thursday, she had managed to pull off half of the tegaderm, and now the dressing needed to be changed again so she didn't get an infection. So I had to call the visiting nurse to squeeze us in on Friday morning, go to CVS and buy children's Benadryl, then call the clinic to find out the dose because for children under 4 they tell you not to use it. Needless to say, it was a crazy morning of phone calls and nurses and crying and confusion. But the rash is going away, and her dressing is staying in place, and that's better.

Now for the big one. So my parents took Saoirse overnight Friday so that we could get a much needed night of uninterrupted sleep. Everything was going great. We dropped her off, she was playing and having fun, we left, went to dinner, came home and planned on going to bed early. I was a bit achy at dinner and remembered that Neupogen can cause some bone pain when it starts to activate the white cell production. I figured I'd take a nice hot bath to sooth the achyness, and then go to bed feeling better. The bath helped, and I was fine going to bed. At 2 am all hell broke loose. I woke up in excruciating pain, and couldn't even move. My pelvis was throbbing, and I couldn't find a position that didn't put pressure on the bones. I had Mike running all over the house finding Tylenol and heating pads and helping me up and down. It was horrible. The pain was worse than when I had my C-section. It felt like my bone marrow biopsy, except instead of one second of the pain, it was constant. It was horrible. I managed to go in and out of sleep until about 5:30 when I just couldn't take it any more. At 6 we called the doctor's office, and had Dr. Bering paged. I explained to her what was going on and she said it should pass in three days or so, and that I could take Vicoden or Oxycodone if Tylenol and Advil didn't work. I never have Advil so I asked if I could try Ibuprofen first, and she said that I could because my platelets have always been fine. I took 2 pills and within 20 minutes the pain was going away and I was able to go to sleep for a bit. So much for an uninterrupted night of sleep. She'll just have to go to Grammy and Grampa camp again another night. I never thought I could be in so much pain, but at least now I know what to expect. At least my parents got a good night's sleep (the baby slept pretty much right on through after she was woken up by my mum at midnight).

As frustrating and annoying as these three things were, the week was really a great week. Saoirse is feeling great, and loving playing and running around the yard. She loves her swing, and she loves gardening with Mike. It's so nice to see her getting back to normal and learning so many new things. I just watch with wonder every day as she figures out something new. She's very close to walking, and I'm sure within the next week or two we are going to be chasing her around the house and the yard, running along behind her every step.

A First Birthday Celebration!

2011-06-01T19:14:00.000-07:00

One year ago today, my beautiful daughter came into the world. Saoirse - which means freedom in Gaelic - decided she wanted into the world quickly and painlessly by showing up butt first! I guess from day one she has been changing our well laid plans. The past year has been full of firsts, new experiences, tears, laughter, joy, sadness and overall love. Pretty much nothing has gone as planned, but I think it has taught us to roll with the punches and take each day as it comes. There have been many unexpecteds, both positive and negative, but overall we have had a year of incredible love and lots of happiness. Right now we are looking forward to healing and loving more than ever, and we are well on our way.

Home Again, Home Again, Jiggity Jog!

2011-05-31T18:47:00.000-07:00

After 5 nights in the hospital we are finally home again. It feels so good to have the whole family together in one place. We had a hurry up and wait morning at the hospital, but managed to get out of there in the early afternoon. When we got home, we decided we were both exhausted and called in backup. Until the backup arrived, Saoirse had a lovely time swinging in the yard on her new tree swing. She absolutely loved it. She also showed some more interest in the grass, touching it and actually walking on it; she even sat down in it once or twice. Saoirse noticed our neighbor's granddaughter playing in the driveway across the street, and we went over and visited for a bit, and played roll the ball. I love seeing Saoirse socialize with other babies and kids. She made some great friends with some siblings of another patient at the hospital. Sometimes I feel like she is so isolated because of infection risk, but I don't want her to miss out on social milestones and friends. It's great to see her enjoying playing with other kids.

Luckily for us, Saoirse decided to go to bed nicely tonight. The hospital is no place for normal bed times or naps. It's difficult to keep to a bedtime schedule and routine when bedtime coincides with shift change and medication administration. Monday night I rocked her for 3 hours while she went in and out of hyper bouts of play, and port-poking snuggling. After 3 hours your arms become quite tired holding up a flailing and sagging twenty pound baby. It seemed like every time I made some headway in getting her to calm down, someone would come in or some alarm would go off. Needless to say, it made for a very frustrating night. She did stay down until 6 this morning though, which is more than I can say for myself (how she can sleep through having her diaper changed is beyond me, but those nurses and CAs have it down to a science). It will be nice to sleep in my own bed next to my lovely husband tonight. Hospital "parent beds" aren't exactly meant to be luxurious; it will be nice to be able to turn over without the fear of falling off the edge onto the floor. Hopefully the baby will sleep through the night. Fingers crossed.

The View from Within

2011-05-29T19:23:00.000-07:00

Saoirse is doing quite well with this round of chemo. She is playful and happy and loving walking around the hospital wing. She is even eating and drinking more than she was, which is a great thing. However, being stuck in the hospital with her has me feeling a little bit trapped. Saoirse doesn't realize that she's missing the great weather and fun things that we could be doing this weekend if we weren't attached to an IV pole. Sure, we got to go walk around the hospital courtyard garden this morning, but I can't let her crawl around on the grass out there and dig in the dirt. I feel like we're just trapped in there, looking out small windows, wishing we were doing anything other than sitting there. Sometimes I think about all the things she'll miss out on this year: she won't learn to swim, she won't get to play with the neighbors in their little pool, she won't be able to go on a long vacation, and most of all, she probably will have more bad days than good days, when she will just want to sit inside and do nothing. I feel so helpless thinking about how much she's going to miss out on this summer. I wanted to give her a fun and exciting summer, with no worries and no limits. But I can't give that to her this year. Sometimes I just feel so helpless. When it was just me, I figured there would be enough other people to help her do fun things (plus, I was counting on being done at the end of July which left all of August). I was looking forward to doing so many firsts with her, and letting her explore as much as she wanted. I guess now we will just have to work on different firsts and explorations. I know she won't remember much of what is going on, and that in reality she won't be missing out, but I will know what she's missing, and I feel like seeing other babies getting to act out "normal" one year things just makes it harder. I keep hoping that she will continue to do well on the chemo, and that she will be her happy self as much as possible this summer. We will find fun things to do, even if they are different than what everyone else is doing. And who ever said it was bad to be different!

Chemo Times Two

2011-05-27T19:31:00.000-07:00

Saoirse was a good girl and didn't spike any fevers before Thursday morning, so her surgery went as planned. Everything went smoothly, she was happy and playful all the way into the hospital, and only got mad once they took her away from us. She did very well, and is only a bit sore from the procedure, especially because she sleeps on her belly, right on the line. Her Broviac was placed in her jugular vein on the right side of her neck (the same access point of my port) and it exits her body just below her bust-line. I'm currently working on a cover like the one I made for her PICC line, so she won't have to have so much tape holding it on, and it won't be rubbing on her skin. She had her first night of chemo last night, and it went well other than all the poking for vitals, etc, woke her up. It took a while for Mike to get her back to sleep, but once he did he had a better night.

I was home Thursday night so I could go to my chemo appointment in Gloucester Friday morning. My nurse called me to let me know that my white cell counts are very low, and that she was going to put in some extra calls to be sure that I would get my treatment today. I did end up getting my treatment, but they are also putting me on Nupogen injections (like what the baby gets) because my white counts had dipped below 100. So now Mike gets the joy of injecting me ever morning as well as the baby. I start them Monday morning, and have to be observed for the first one, so I will go up to Beverly for a quick injection and then back into Boston to relieve Mike. Other than taking longer than usual, things went well, and I took a good, long nap when I got home. My parents went into Children's to help Mike out with the baby, in case he wanted to get some rest.

Mike and my parents said that Saoirse had a good day. Melanie came and buzzed off her hair in the morning so she wouldn't keep getting it in her mouth and stuck on her face when she was sleeping. She likes rubbing her head and giggles when she does; I think she likes the way it feels. She played during the day and took a nice noontime nap. When I got here, we went for a walk and read a book to burn some energy and then calm her down before bed time. The nurses took her vitals and hooked up her IV for premeds, and I put her to bed. She still has a little cough from the scratchy throat and from post nasal drip, but with the humidifier on she seems to not be bothered. Hopefully she will stay asleep tonight and will get a good night's rest. We'll see how tonight goes, and hopefully I won't be too tired tomorrow to get in some good playtime with her.

Schedule Changes

2011-05-24T17:20:00.000-07:00

Monday-
We had a good weekend here. Saoirse was happy and playful and pretty much feeling like herself. We had her clinic appointment today, and were supposed to go in for 1:30, but the doctor called at 9 and asked if we could be there for a kidney test at 10. Other than this being totally rushed, I was totally not prepared to spend the whole day there. But we went in, and did her tests. It took all day, but I guess it was a good thing we were there, because she spiked a fever and they had to give her a dose of antibiotics. This changes our whole schedule for the week, however, as now they won't do her surgery tomorrow because of the risk for infection. So now, instead of going in tomorrow morning for surgery and being admitted to start chemo, we are going in for a transfusion in the morning tomorrow, and then not going back for the surgery until Thursday morning. They will admit her then for chemo, and we'll be in for 6 days. It's just frustrating that everything got moved. I know they do it for safety, because they don't want her to develop an infection after surgery, and I can appreciate that, but it just messes with my plans. We already have a logistical nightmare on our hands with my chemo schedule and figuring out who will be where when. We don't need to be mixing things up. Also, I really want to get her started on this next round of chemo. It's more intense, but I think it will help to shrink down some more of her tumors and hopefully make her more comfortable. She's still not sleeping well, and It really makes it hard on her and us.

Tuesday-
Today we went in for blood. Saoirse's temperature was fine when she got up in the morning, but she was running a low grade fever the whole time we were at clinic. She never got very high, so as of now she's still set for Thursday. At this point, even if they decide not to put in her line this round, I just want her to be able to start chemo. I really think it will make her feel better.
My mum came with us to clinic today, and we even saw Saoirse's friend from the hospital there. It was nice to see his mum and dad and chat for a bit. Saoirse had a good time playing with blocks and watching TV while we were there. She was having a grand old time, dancing and playing with the blood pressure cuff. It's nice to see her happy and playing. Now if we can just get a handle on this sleep thing, we'll be all set.
A day off for Saoirse tomorrow, as long as she doesn't spike a fever, and doctor appointments for me. Then into Children's Thursday morning and chemo for her; then chemo for me on Friday. Hopefully the schedule all works out.

Fevers and Fundraisers

2011-05-20T18:30:00.000-07:00

Although we are still not sleeping much, we have had a pretty good week. Saoirse has been her happy self, playing and laughing and mostly in good moods. Thursday she was feeling a bit under the weather, and was running a moderate fever, so we went down to the clinic and she got a dose of antibiotic. They didn't find anything in her blood, so she's probably just fighting of a mild virus (or it could be those darned teeth!). She didn't sleep much overnight (I'm pretty sure giving her the Zofran keeps her from sleeping), but she was feeling much better today. We had her pre-op appointment for her central line placement surgery, and all that went very well. Next week will be spent mostly in the hospital. Monday we have her regular clinic day, and then Tuesday morning we go in for her surgery. She will be admitted then and will stay for her 5 days of chemo. We are looking forward to the extra help this round for a couple of reasons. First, it will be my chemo weekend as well, and I will be having my sleepy/blah days over the weekend. Secondly, this will be her first round of the more intensive drugs, and I like that she will be watched for reactions and side effects by the nurses. As much as being inpatient in the hospital is inconvenient for working and comfortability, it is sometimes a relief from having to do everything ourselves at home. I will be talking to the doctors and nurses this round about other methods of side effect management as well. Saoirse seems to be hypersensitive to the oxycodone and zofran, and she needs to be getting more sleep. Depending on what some other options are, I may go a homeopathic route for side effect management for her. She can't not sleep for the duration of her treatment. We are going to need options.

Some of my friends are working on some fundraisers for us. We are so grateful for this. Mike is working as much as he can, but he has to be available for doctor appointments and clinic days, and he will have to be available when she has her transplants done. Needless to say, money has been tight, and all the traveling back and forth into the city, and parking, and doctor co-pays adds up quickly. We are so appreciative of the help we have received so far from family and friends. We are also getting help from some cancer organizations, and have been submitting applications to foundations with the help of Daisy, a resource social worker at Dana Farber. Some mom friends of mine have organized a Diaper Derby Fundraiser for us that will be held at the end of June (for more info click HERE). It sounds like a ton of fun, and I think it was a great idea for a fundraiser. We are truly lucky to have so much great support around us. We feel very loved. Thank you.

Sleep is Alluding Us....

2011-05-16T18:07:00.000-07:00

We have had some great days at home so far. Saoirse is playing and laughing again, and enjoying "running" around the house, dragging us along all the way. The only downside so far is that she is having some trouble sleeping. She is normally a great sleeper, and gets quite mad when she doesn't get enough rest, but recently she has been having a lot of trouble getting to sleep and staying asleep. It has made for some very frustrating 2 am battles, and some very uncomfortable sleeping in our bed for Mike (she doesn't seem to like to sleep on me; apparently I'm not comfortable). One thing we are considering is that the pain medicine she is on (oxycodone) is keeping her from falling asleep at night and therefore making her night waking worse. I think tomorrow we will try not giving it to her right before bed. I have asked the doctors about using homeopathic camomile (usually used for teething) to help her calm down and sleep at night. They are supposedly looking it up for me to make sure it doesn't have any interactions with her other medications. Hopefully that will help her some. I really feel like she's less in pain and more just off schedule and feeling clingy.

We had our first clinic day at the Jimmy Fund Clinic. Saoirse will be doing most of her outpatient care here. The facility is nice, and they have a lot of fun stuff for the kids. It's a very happy environment and it's nice to see the kids happy and playing while they are there. We met with the nurses and doctors that will be following her from now on, and we started getting her schedule together. It's going to be a bit crazy, but they are happy with her response to treatment so far.

We got some of the results back from the biological testing on Saoirse's tumors today. We had hoped that she would be in an intermediate risk category, however she does have the genetic "NMIC" factor that means that her tumors are more aggressive and will need more aggressive treatment. Her next round of chemo will be over 5 days, and her treatments will be 3 - 5 days every 3 weeks. She will eventually have to have what is called "stem cell rescue" which takes her own stem cells from her bone marrow, and returns them to her after some intensive chemotherapy. Everyone is still very positive about her prognosis and say that her age is still her best asset against the disease. She is showing so much improvement already, that we can't wait to see how much she improves after her next cycle. Balancing the meds for the side effects seems to be the most difficult right now, but I'm sure we will get that figured out at some point. No matter what, we are sharing a lot of love and that is what is the most important.

Home Again, Home Again, Jiggity Jig!

2011-05-13T18:07:00.000-07:00

We are very glad to be home. Saoirse's last day in the hospital was Thursday. She had fun playing with a new friend, a little boy about 5 or 6 years old. He took quite a liking to her, and was calling her his "girlfriend" for a few days. His family was nice to talk to, and we will be staying in touch with them. Dad and Mike went to a fathers/male caregivers group at the hospital Wednesday night, and were really glad they did. I think it's good for them to talk to other dads, especially some that have been doing it for longer to get some perspective and some hope for the future. They hold the meetings twice a month, and I really hope they continue to go for a while.

Discharge seemed a bit overwhelming, and I was very nervous bringing her home and knowing that I wouldn't have a nurse call button. It's just a bit nerve wracking. But we did fine. The transition was a bit rough for her, and she had some trouble going to sleep, but we let her figure it out and get comfortable on her own. I really felt that it was important for her to get back into a more normal home routine right away. With so much going on, and being in and out of doctors offices so often, I want home to be the constant for her. I know that there will be differences, with medicines and pic line maintenance, but I want her to feel like home is a safe place to be, where she can be comfortable and her happy, playful self.

Today I had my chemo in the morning. Saoirse woke up early (I think she was hungary as she wasn't into eating much last night), so we let her wake and doze for about an hour, then went and got her going for the day. She seemed quite happy eating her cheerios, and she drank most of a bottle of milk, which is good, as she hasn't had much interest in drinking lately. She spent the morning her with Mike and my Mum, and Dad took me up to Gloucester for my treatment. I have a sinus infection again, so I'll be on antibiotics for 10 days, and then I'm starting Singulair for allergy control. My counts are low again, although I've been lower, so I'll have to be careful not to pick up any infections. The hand sanitizer brigade is growing, and will be used quite frequently. This afternoon the visiting nurse came while Saoirse was taking a long nap (she needed it as her morning nap was quite short), so we were able to talk to her and ask our questions before she woke up, and then she examined her when she woke (we fed her right when she woke up to trick her into drinking a good amount of milk, and she was able to drink almost another whole bottle!) I practiced drawing up needles, and Mike gave her her shot. He did a great job, and I think she is less afraid when he gives it. I may get to the point where I can give it to her, but for now, it will be his job. Tonight she was a bit sore, so we gave her some pain medication, and she walked around the house a few times before going up to bed. We are just so glad to see her acting more like herself, and hearing her laugh is the best part of all. It's so good to have her home!

A Sneak Peek at "Normal"

2011-05-10T15:51:00.000-07:00

All things considering, the past two days have been pretty good. The only appointment we had on Monday was with the Audiologist. Saoirse has some fluid in her ears (she's congested, there is no infection), so her ambient hearing is a bit low, but her bone/nerve hearing is perfectly fine, so we are not concerned at this point (I think my head is full of fluid right now. The hospital air seems to be aggravating all of our allergies). Saoirse ate a lot of food yesterday (I keep feeding her to help prevent nausea), and she had some playful moments. She really likes the keyboard in the playroom, and we were able to go outside in the garden and enjoy some of the nice sunny weather. Today was about half and half. She had a bone scan scheduled, so she was able to eat breakfast, but could not have lunch. The morning was great! The IV that had been put in her hand when we arrived had stopped flushing, so it was removed when she got up. I think this was her favorite part of the day, because that hand had really been bothering her. She ate a pretty normal breakfast, and we walked around the halls a bit, and visited with some of the nurses (it was early, most of the kids were still sleeping). We came back to the room for a bit and played. She was laughing and enjoying looking out the window, and having fun playing with tissue boxes and plastic bottles (who needs toys, right?). I was able to get some great pictures of her having fun. She went down for a morning nap, but ended up being disturbed when her radioactive injection came for her bone scan. I couldn't get her back to sleep, and needless to say it was a rough afternoon of crying and fussing (Saoirse does not do well not sleeping, and she couldn't eat either). We walked and rocked, and I tried to distract her as much as possible. She took a cat nap and noon, and it seemed to perk her up enough to be happy for a bit before her scan (which was running late). She even made a friend - a little boy about 4 years old who is also being treated for Neuroblastoma. She was thrilled watching him play trains. Her bone scan went well. They did NOT have to sedate her, which is good. She wasn't a huge fan of lying there, but there was quite the entertainment team singing and dancing to distract her (and it wasn't even me and Tabitha). Mike got here during her second nap, and when she woke up she ate a nice meal and got in plenty of daddy time. It is comforting seeing her get back to her old self, playing and laughing and being social. The environment here is so great, and it makes it easy to help her get a bit of "normality" in a hospital setting. I hope that each day we see more and more of her personality come back through. Once she has the IV out of her food I'm sure she will be off and running. I think we'll have a lot of our little girl back by the time we get home.

The Testing Continues

2011-05-08T18:07:00.000-07:00

Saoirse has had many tests done, and so far things are going well. She had a type of central line called a pic line put in, and had her fully body CT and core biopsy. The biopsy came back as mostly dead tissue, and they determined that the tumors in her belly are most likely 80 - 90 percent dead. This shows that the tumors are fast growing (they die because they outgrow their own blood supply), and means that they should respond to chemotherapy very well. Because they needed viable tissue to do the biological testing that determines her treatment, the doctors moved her bone marrow biopsy from Monday to Saturday morning. The cancer is in her bone marrow, which was expected, and the doctors were able to get enough tissue to do all of the biological testing. This means she will not have to have an additional surgical biopsy done to try and collect live tumor, and it also means that she is definitely in stage 4 disease. Saoirse has had two nights of chemo, and has her last one tonight. There has already been improvement in the swelling in her eyes, and the doctors are very glad to see how well she is doing. Her face is starting to look more like her, and she is beginning to perk up and want to do more normal things. She ate quite well today, and is loving squash, jello and ice cream. Tomorrow we have a bone scan and there will be some more tests and doctor visits over the week. She could come home as early as Tuesday, but more than likely we will stay until Wednesday or Thursday. I just want her to be ready for coming home and for it to be a good experience for her.

I have my doctor appointments on Wednesday and then my chemo on Friday morning in Gloucester. I'm going to be working with the doctors and nurses here tomorrow to get a schedule written out for the next few days so that we can plan for appointments and scans that both of us have to do, so that we don't end up having to be in two places at once. I'll also be working with one of the Dana-Farber resource advisors to apply for financial assistance, and to get any paperwork in order that needs to be filed for Mike's human resources at work, and for any assistance programs. They have really helped to show us that there are ways to get help.

I'm hoping to keep seeing improvement in Saoirse as the week goes on. I'm sure she will look even better tomorrow and I think she'll want to play some. If the weather is nice, I think maybe we will try and get down to the courtyard so she can go outside for a bit. She seemed to enjoy looking out the window today. Most of the families, nurses, and doctors are shocked and astounded when they find out that mother and daughter are going through chemo at the same time. The ophthalmologist (or optometrist, I can never keep those straight) thought I was kidding (I'm not sure why I would kid about that, but I suppose that's just an expression of disbelief). In a way, I feel like I can help interpret some of what she's feeling because I know how I feel when I have my treatments. I really think that will help me to help her even more. I think my sister had the best explanation - In a way it's good I got it first, because I already know what she's going to feel like and I can help her get through it. I think that's a pretty good way to look at things.

Another Hit in the Hit Parade - D day #2

2011-05-06T20:06:00.000-07:00

After a few more doctors and a lot more tests we have an answer to the baby's mysterious ailments. Saoirse was "diagnosed" with a malignant tumor called Neuroblastoma last night. She is suspected to have stage 4 disease, and we have been admitted to Children's Hospital Boston for the week. The prognosis is good, and this disease (when diagnosed before age 1) has a high cure rate, similar to my Hodgkins disease. She has had many tests done today, and was started on her Chemotherapy tonight. More tests to come this week. I will post the whole story soon, but tonight I must try to rest and regain some of my energy for tomorrow. We are staying positive and have a positive team of doctors working with us. Thanks to all those who are supporting us through this. It means the world to us that you are so generous with your resources, time and love.

The Saga Continues...

2011-05-03T19:32:00.000-07:00

After the ER visits and lots of crankiness, we still don't have an answer for what's going on with the baby. It has been a rough couple of weeks, and I'm thoroughly exhausted. Tomorrow we are going to see a neurologist at Children's Hospital in Boston to see if he can determine the cause of her swelling. She now is quite swollen in front of both ears, and still has quite an egg on her right temple. Her eyes are still swollen as well, and still yellow, but at least it seems like the bruising is going away. It's been so frustrating. She is just not feeling like herself and she is obviously in pain, and I just don't have a way to help her. The hardest part is not knowing what's going on. I just hope that they can determine the cause tomorrow and that we can start fixing the problem. (And hopefully the answer isn't that this is what teething looks like.) Sometimes I feel like if I just had a bit more energy, I would be able to help more, but I know that has nothing to do with it.

If it's not one thing, it's another.

2011-04-22T18:17:00.000-07:00

So I'm feeling better, and things are looking up on my end, so of course I'm hoping for a break in the craziness. But no, the baby had to create all sorts of craziness all on her own. On Monday she woke up with two unexplained black eyes. After deciding to scare us by throwing up, we were told by the pediatrician to go to the ER. Now, first off, my blood counts are low and I'm not supposed to go to the grocery store, let alone the ER. But we all went, waited for an hour, waited again, and then were told that she's fine and maybe she has allergies. (She's cutting her two front top teeth by the way, and is not sleeping too well.) So the next day, she was still cranky and still had those black eyes, so I made an afternoon appointment with the Pedi. Mike took her in, as I still am not supposed to be exposing myself to anything (let alone an office full of sick kids during school vacation week). Mike called me about 45 minutes later and told me that they were transferring her by ambulance to Children's Hospital in Boston. What? I thought she had allergies! So, now I've called my parents to come drive me to Boston, where I found a pretty happy baby (considering) and not a whole lot of answers. We ended up there until midnight just to find out she has a minor virus or something, and is teething. I'm pretty sure we didn't need an ER to tell us that, but at least they did real tests. So for the rest of the week, I've had a sleepy, sore, cranky baby with no appetite, who is now refusing to drink milk or eat anything green. So much for working to change her over to milk this week. So now I'm exhausted, and just hoping that she feels better by Monday. I'm going to need to get out of the house next week, and she just hasn't really been letting me. At least she's healthy, and she seems to be doing better each day. Now if those teeth would just come through we'd be all set!

Better News Than Originally Thought

2011-04-16T18:27:00.000-07:00

In better news, my PET scan was actually negative! I found this out from the research nurse on Thursday morning after my doctor's appointment. This is very good. Now all I have to do is stay away from infections. According to my nurses at the oncology lab, my white blood counts are very low. I'm at an extremely high risk of infection. So, I will be sending my mother to the grocery store, and staying home crafting a lot. Hopefully the weather will continue to get warmer so we can spend more time out side. And I can't wait for quarry season. I missed doing much swimming last summer with the baby being so small, so I'm determined to get lots of water time in this year. Well, here's to healing and here's to warm weather!

Positive thinking leads to Positive outcomes

2011-04-13T19:58:00.000-07:00

More good news today from the doctor. My scans show good improvement. My cells are "completely responsive" to the treatment, and the doctor is very happy with how things look. It has been recommended that I stay on my current treatment regimen, the ABVD every other week, and I'm very happy about that. I feel like we have gotten into a nice routine, and it would be frustrating to have to relearn a new weekly routine. I still have some swelling in my neck, but it is to be expected because of how much swelling was there in the beginning.
In other news, I have gotten my Etsy shop going. I have only a few things posted so far, but I'm posting every day, so there will be more listings coming. Also, I'm working on some new bags that I think are going to be amazing. Here's the link to the store: http://www.etsy.com/shop/Ugllove

Slow going

2011-04-11T18:24:00.000-07:00

I have definitely been more fatigued this round than before. I am constantly needing to nap and rest. But, my support system has been great, and have given me all the time I need to rest up. This past Saturday I had a PET scan for my re-staging. Because of the radioactive injection they give me, they recommend not coming in contact with young children for 10 hours after the test. So, because my daughter would want to hang on me if she saw me, she stayed at Grammy/Grampa camp for the day, and then stayed over night, too. It was a really nice break, and a chance for my husband and I to have a true date night for the first time since the baby was born. (10 months is a long wait!) I feel like being able to sleep in on Sunday really recharged me for the day and reset my system a bit. I felt so good, we all went for a walk up to the park in the nice sunny weather. This morning I had a CT scan and had to drink the terrible liquid before hand. I made the mistake of drinking it on an empty stomach rather than getting up at 5:30 to eat something (you can't eat three hours prior to the scan and my scan was at 9 am). It was a big mistake. It totally upset my stomach. It was all I could do to get it down. Then when I went to eat something at home, instead of making me feel better, it made me completely nauseous. My mom stayed a bit longer with the baby and I went to take a nap. (My mom also reminded me that I have a cabinet full of anti-nausea medicine that I can take - score one for straight thinking mom!) The nap helped, and when I got up I ate a nice lunch and felt much better. After a visit from my best friend and a walk around the yard (another nice day out), I even managed to go to ballet class. I'm convinced the exercise helps break the nausea cycle. I'm so glad that the weather is finally starting to be good enough for daily walking. Tomorrow I have a pulmonary test, and then Wednesday I get my results from my re-staging tests. I'm keeping my fingers crossed to stay on the ABVD and not have to go to BEACCOP (I think I have a letter wrong in that one, forgive me). We'll find out on Wednesday.

Treatment #4 - Nap Time

2011-04-02T17:28:00.000-07:00

So on treatment day, yesterday, I was already tired, but all the meds (mostly the Benadryl and Ativan) just knocked me out. I didn't even do any knitting on my poor grandmother's christmas legwarmer that she's still waiting for. I was super sleepy today as well. I had a hard time getting out of bed, and then I took a two hour nap this afternoon. Thank goodness for family being able to help with the baby, or else she probably would have been getting into trouble when I fell asleep on the couch. But the most annoying thing right now is that there is a stitch sticking out of the scar from my port implant and it won't come out! I had the nurse look at it yesterday and she said she wouldn't pull it out. It catches on clothes and it's just frustrating. Now I have to sit and wait for it to work it's way out on its own. I had a similar problem after my biopsy. That piece took over a month to come out on its own. Arg. Just another glitch in the road. But I guess if my only big annoyance is that I have a bothersome scar issue, I think I'm doing pretty well.
Next week I have a bunch of testing to re-stage me and determine what my treatment will be continuing on. I'm keeping my fingers crossed for good news.

Bye Bye hair....

2011-03-31T18:35:00.000-07:00

So tomorrow is my 4th treatment, and things are going well. I am definitely losing my hair though. It's been slightly annoying because there is hair EVERYWHERE! It's not coming out in clumps, but rather it's thinning out all over. At least I have some hats done that I can wear, because my head is cold! I know that they said it would be, but you don't realize how much heat your hair holds in until it's gone. Ah well. Now I have an excuse to wear funky hats!

The Creativity is Flowing

2011-03-24T19:21:00.000-07:00

So far things are going very well. We welcomed spring this week, and as such, my allergies are going nuts. My nose hasn't stopped running for two days, and I just don't have the energy to try and catch it. Recently I have been spending a lot of time with yarn. A friend of mine is a portrait photographer and has many newborn clients. She approached me and asked if I could make her some hats and props for her shoots. Well I have gone nuts! I have been crocheting and knitting away and have made some beautiful pieces. I'm really enjoying the individuality of each one and the fact that they are so tiny and cute doesn't hurt either. All this creative work got me thinking about how happy doing something creative makes me, and how happy it makes other people. It's a conversation starter, a frustration release, a sense of accomplishment, a piece of yourself in a tangible object. And then I thought about myself, the cancer patient, and how I was using my creative process to help me work through this tough time. It gives me something to talk about, it gives me my release of frustration, it makes me feel that I actually got something done, and each piece I make has a piece of my heart with in that I can share with others. This is where the idea starts, and as I build it, and think about it, and talk about it, it grows more and more powerful and meaningful. I'm working on a project to join crafting and cancer patients. I have a friend who worked for a non-profit for a while, and he's going to help me with any questions I have. I'm hoping to be able to get things started soon. I can't wait to share my creative outlet with other cancer patients, and hopefully bring them some of the benefits I have experienced.

Treatment 3 - Quick and Painless

2011-03-20T19:41:00.000-07:00

My third treatment round has, so far, gone off without a hitch. My Portacath is healed over and no longer sore, and I amazingly still have my hair (so much for all those hats). My dad took me to treatment this time because my lovely husband had a cold and didn't want to infect everyone else there. It was a quiet morning up there, but it was nice to just sit and relax (and try and get some knitting done on my poor grandmother's now very belated Christmas gift). My chemo drugs came up from the lab quickly, and the nurse, Kristen, got me started right away. I'm still totally loving the Portacath. It is so much quicker and easier, not to mention almost completely painless. Things went smoothly and I was done and out in under 4 hours. So far the weekend has been good. I'm feeling good and I've been able to cut down on the extra anti-nausea meds by not taking extra Ativan each day. The nice thing about not taking the extra meds is that I have much more energy (Ativan makes me drowsy), and much less dizziness (the side effect of every single one of the anti-nausea drugs). If this keeps up, I think I'll be quite ok for the next few months. I have one more treatment before my next scan to see how my body is responding to the chemo. My appointments are all scheduled, and I'm ready to find out if I'm actually healing as well as I feel like I am. I really hope that I can stay on the treatment I'm on and not have to switch to a more toxic regimen. For now I'm focusing on how good I'm feeling and how much crafting I'm getting done. Now if only I could focus my attention on organizing my house. Spring is here! Time to clean out the unnecessary and organize the rest.

Hats galore!

2011-03-13T19:09:00.000-07:00

In preparation for my hair to fall out, I started making myself some hats. I have become addicted to crocheting hats at the moment, however my hair has yet to fall out, so we'll see if I end up needing them all. I actually taught myself how to crochet by watching Youtube videos, and I have really gotten the hang of it now. I'm thinking of starting an organization to benefit cancer patients in which crafters of any kind make handmade items (hats, shawls, scarves, etc.) to give to patients, but also items that could be sold and have proceeds benefit a single patient and/or a cancer cause. It's an idea that's still in prenatal phase, but something I'm working on none-the-less.
I've still been feeling good. I've been eating like a horse. Everything I had read and heard made me think I was going to have no appetite at all, but I have been totally the opposite. I don't eat a lot at once usually (although tonight at dinner I had quite the spread), but I eat constantly throughout the day. This has been a challenge for me because I'm not used to buying snack food at the grocery store. I now find that I have to keep things in the house that are quick to eat. Fruit is great, also no salt added pretzels and peanut butter crackers. Yogurt is great too, but that takes two hands to eat and sometimes it's just not feasible now that the baby is mobile. (Yes, my nine and a half month old is crawling like crazy, walks along the furniture, and just yesterday, started climbing stairs.) One thing I'm super excited about is some vegetable curry soup that my friend Meredith brought me on Friday. I can't wait to have it.

Treatment Round 2 - the amazing Portacath!

2011-03-07T19:24:00.000-08:00

One cycle down, one to go before another scan to see how my body is responding. So far the swelling in my neck has gone down significantly and it's almost back to normal. I was scheduled for my second round of treatment on March 4th, so I had a Portacath put in the day before to make treatments easier. The procedure went well, but left me quite sore. When I went in for treatment the next day, I was worried that it would be uncomfortable to use it. I was very wrong. Even though I was still tender, the needle was small and went in quickly (unlike when they have to try and get an IV in me). My nurse, Chris, was able to put the drugs in quickly and didn't have to slow them down because of vein irritation. Even with the wait for my doctor's approval, I was in and out of treatment in less than 5 hours (it had taken almost 7 the first time). Even though I'm still a bit sore from the surgery, I've been feeling better this round. I still haven't felt like myself for the past few days, but my stomach is not nearly as easily turned. My energy level is super low, but napping seems to help, and some family help with the baby doesn't hurt either. Hopefully this time around I'll be able to visit with some friends and have some play dates for the baby. I think it would be good for her to play with some other babies, not just her loving adult family.
Tomorrow I have a pulmonary test to see how my lungs are standing up to the medications. Hopefully everything will look good.

Day 4 Post Treatment

2011-02-22T19:04:00.000-08:00

I finally felt like myself today. I definitely had to eat when I woke up, but after that it was pretty smooth sailing. I definitely had more energy and I didn't feel sick to my stomach, which just makes it so much easier to get things done. It was quite a productive day. The baby very nicely took her morning nap (I think she is finally settling down after weaning), and my parents came so we could do some errands. The baby wears cloth diapers, and they had some crazy residue going on, so we drove down to diaper lab to pick up some stripping detergent. From there, we went up to Ipswich to Appleton Farms to pick up some bones and liver for the baby formula I make. It was a bit disastrous getting there (I got bad directions online and almost ran out of gas), but once we found it, we were amazed. The woman who met us was so sweet, and got us plenty of supplies for the rest of the month. I can't wait until they open for real in the summer to check out what they have there. It seems like a great place. It was just great to go and get things done and get out of the house. I am glad that I'm back to feeling somewhat normal. Hopefully I can get some stuff done around the house at the end of this week. My blood counts will be lowest 7-10 days after my treatment, so I'll be "quarantined" in my house. My plan - get some of this stuff organized!
Before my next treatment I will be having a Portacath put in my chest. This will make it much easier to receive treatment each time, and it means I won't have to sit there and hope they can get an IV in me (I hate needles, and I have tiny veins). It is day surgery, but I think it will make the process a lot easier in the long run. I was debating it at first, but when they had to run one of the drugs into my vein so slowly because it was irritating my arm, I decided I'd rather have the portacath in for 6 months, than loose that much time over the course of treatment. Hopefully it will make my treatments smoother and easier over all. I guess I'll find out soon enough.

Day 3 Post Treatment

2011-02-22T07:21:00.000-08:00

So, I forgot to post last night, but this is just as good. Yesterday was much better than Sunday. I still didn't feel like myself, but I didn't feel as sick as the day before. I was able to eat more normally, which I think helped to make my stomach feel less icky. We even had some friends come over and visit, which was nice. They brought a juicer and some great veggies and fruits to make some fresh juice. I'm excited about that. I was still feeling a bit tired, but napping helps. Also, because I weaned the baby so quickly, I've been a bit engorged and uncomfortable. Hopefully that will go away soon. I'll have to eat some sage and take a nice hot shower.
This morning I'm feeling a lot better, but I'll post about that later.

Day 2 Post Treatment

2011-02-20T17:41:00.000-08:00

Today I felt a bit more sick than yesterday. My stomach was easily turned, however I was never so sick that I felt like I needed extra meds. I took my pills as usual, and my parents came over to help with the house and the baby. They have been such a big help. I was really able to just sit and be calm for most of the day. I didn't have much of an appetite, but I ate 4 small meals and a couple of snacks throughout the day. I think it helped to stave off the nausea. In the early afternoon I was quite tired, so I was able to take a nap, and it definitely helped. I have been a bit constipated all day, which I am definitely not used to, and I think this contributed a lot to the general "icky" feeling I had. Hopefully tomorrow (after a couple overnight pills) I will be able to "move past" the icky, and move toward the feeling better. Tomorrow could go either way, but I'm hoping that it will be better and I can start getting back into the "normal" routine. This first round of treatment is the big mystery - after this hopefully I will be able to predict a general "schedule" of how I will feel. Then I may be able to actually plan some play dates with the baby!

Day 1 Post Treatment

2011-02-19T18:10:00.000-08:00

Today was my first day after treatment. This morning I felt quite good, and went about my business as usual. I have a few post meds to take, and I have been taking those all day, mostly to ward off nausea and prevent infections. I went out with my family to drive my grandmother to my uncle's house, and had a nice lunch out with my parents. When we came home I was feeling a bit tired, so I went up and took a nap while my parents stayed with the baby. I slept for about two hours, and got up feeling a bit chilled. I had a slight temp, but not high enough yet to call in, so I took a Tylenol and then sat down with a blanket. I fed the baby and snuggled with her. This always makes me feel better. My loving husband made me some soup, and that warmed me up from the inside. According to the thermometer, my temp had gone up a bit, but I decided to take it again in a bit so that I wasn't still all hot from hot soup. Temp went down, thank goodness, so I'm just waiting to take my last post med at 10 and then I'm off to bed. Hopefully the baby will agree with sleeping tonight and stay in bed until 6 at least. We'll see if the side effects hit me more tomorrow. Now all I have to do is figure out how to get my tons of phone calls made.

Treatment Day One

2011-02-18T20:29:00.000-08:00

I had my first round of Chemotherapy today. I was very nervous going there. I just had no idea what to expect. I received treatment at Addison Gilbert Hospital in Gloucester, and their new treatment facility is amazing. It's comfortable and open and inviting, and it has an amazing view of the ocean! My nurse, Chris, was wonderful. She went over everything in detail and made me as comfortable as possible. The first three medicines when in fine, no discomfort. The last medicine (the D in the ABVD regimen that I'm on) went in kind of rough. She started slow, and it seemed ok, so she bumped it up a bit, but my vein got really sore so she had to slow it down quite a bit. It just meant I had to be there for a bit longer. She recommended that I try and get a port put in my chest to make treatments quicker and easier. I will be calling my oncologist on Tuesday to see when the best time would be for me to have it done. I think it's a good idea. I don't like being stuck with needles anyway, and it would mean that I could have my hands a bit more free to do some knitting and crocheting while I'm there for my treatments.
One thing that surprised me the most was how many medicines I have to take just to ward off the side effects. I think there are 4 different pills and one drink (not including the birth control) that I have to take every day for the first few days after my treatment. I'm hoping that by taking them all this round, I can figure out which ones are helping the best and which ones I can take less of and still avoid the side effects.
The next couple of days are supposed to be the worst for side effects, so Chris advised me to get a little help with the baby and to take it easy; plus one of the meds will make me feel just sort of relaxed and not wanting to move much. With a cruising 8 and a half month old, that won't fly. So my parents are on duty this weekend. We'll see how it goes. Maybe I'll be lucky and manage to stave off some of the side effects. There's always hoping.

Chaos in Phone Calls

2011-02-16T18:51:00.000-08:00

Things have been progressing, but they seemed to come to a standstill on Tuesday. On Monday I had an appointment with a hematologist in Boston, just to have a second look at the pathology. He agreed on the course of treatment, and agreed that I should start treatment asap. I called my oncologist's office on Tuesday to get the treatment ball rolling, but their computer systems were down all day, and I didn't get anywhere other than the promise of a call on Wednesday. That call didn't come until 1:30 in the afternoon. Trying to schedule final tests, blood counts, and 5 hour chemo sessions all in two days seemed like an impossibility. But, it seems like things are going to fall into place. I have a blood test and CT tomorrow, as well as a meeting with the research nurse who is going to go over all my paperwork for the clinical trial in which I'll be participating. Then, hopefully, Friday is the day that treatment will start. I figure the sooner I start, the sooner I'm done. More info tomorrow, but hopefully things will go as planned.

A Little Good News

2011-02-12T18:15:00.000-08:00

I received the results of my bone marrow biopsy on Friday. Luckily for me, my bone marrow did NOT show Hodgkin's. In the past three weeks, I have gotten so much negative news, that this news just felt like such a victory, albeit a small one. With this news, I have been staged as Stage 3 B. Most of my swollen lymph nodes are in my chest and neck, however I have some cancer in the nodes just below my diaphragm in my belly, and my spleen is involved (although not enlarged which is good). Although this is still late stage, and I have some negative factors in my blood counts, the fact that no other organs are involved so far is a very good thing. I'm trying to stay as positive as possible, but the reality of starting treatment has me a bit scared. I will most likely be starting treatment the end of this coming week, and I think my biggest fear is not knowing what to expect. Everyone reacts so differently to the treatments, that you can't be sure how your body is going to respond. I'm trying to just think about getting better, and not about how I'm going to get there. I have an appointment with a doctor at Beth Israel Hospital in Boston on Monday for a second opinion on treatment, and to find out if I qualify for, or should consider, any clinical trials. After that, I'll be starting treatment.

Bone Marrow Biopsy

2011-02-08T19:21:00.000-08:00

Today I had my second oncology appointment, and I had a scheduled bone marrow biopsy. Personally, I was kind of dreading the procedure. Not really for the actual biopsy, because I had no idea what that would feel like, but I hate Novocain. (I'm the kind of girl who gets her teeth drilled at the dentist without it.) The procedure didn't take that long, but it was very uncomfortable. I'm not sure exactly what goes on, because I didn't dare to look (and I really don't want to know), but it was definitely not something I want to do every day. Just as I thought, the first shot of anesthetic was awful; it burns. Once that settled in, it was ok for a bit. Then she went to draw the marrow. You know when you have a sore tooth, and then something ice cold hits it and you get that shooting pain? That's a pretty good description. Thank goodness she only had to do it twice. I would say, all in all, not much more painful than a dentist appointment. The very awkward, dull ache afterwards, however, is a strange thing to deal with. The cut in the skin is no worse than a razor cut (I used to be a picture framer, I got these a lot, hence my analogy), but the hole they made in the bone, is definitely there. They say there are no nerves in bones and therefore bone pain doesn't exist, but I can certainly feel something. Sitting today became an art form, and stairs made me feel like an old lady. The ache has gotten better over the day, and hopefully will only last for maybe one more. I have an appointment on Friday to get results and (I think) a final stage. Then will come the treatment options and plans. But ahh, that is for another day.

A side note about baby formula

2011-02-04T18:09:00.000-08:00

I currently breastfeed my little girl full time (she's never had formula), so I didn't know much about commercial formula. When I do start my treatments, I will have to stop breastfeeding to prevent the medicines from transferring to the baby. I have been on a restricted dairy diet since she was a week old, because she is sensitive to the proteins, so I grabbed a sample tin of soy formula from my mom's group and brought it home. Then I looked at the ingredients.... the first ingredient, making up over 43% of the powder, is CORN SYRUP SOLIDS! What? Corn? This seemed ridiculous. I don't eat anywhere near 43% corn in my diet. So my dad said, "can't you make your own? you make her food anyway." I hadn't even thought of this! I looked it up, and yes, I can make my own. And after doing some research, I found that it's almost the exact same price! Strangely enough the dairy free recipe is made from beef broth and liver, but hey, if it's nutritionally parallel, it has to be better than almost half corn. (There are raw milk and raw goat's milk recipes as well, but I figure I'll avoid the casein until she's one and then switch her to raw goat's milk.) I'll put the link to the site I found the recipe below just because it is really interesting. It may take a bit more work each day (a whopping 15 minutes), but I think it's totally worth it to avoid the insane amounts of corn sugar.

http://www.rockwellnutrition.com/Can-I-use-Goat-Milk-instead-of-infant-formula_ep_92-1.html

And the Testing Begins!

2011-02-04T17:52:00.000-08:00

I start my first round of testing tomorrow for my staging. I met with my new oncologist last Wednesday, and so far I'm impressed. I really like her style - very explanatory, perfectly happy to answer any questions, and most importantly - SHE REALLY LISTENS! In this whole process so far, she has been the only doctor and office to be sure to share with the testing facilities that I am nursing a baby! This is so important to me, and to find a doctor and office that is completely understanding of how important it is seems like a miracle. The barrage of testing starts off with a full body PET scan. I get to be radioactive for a day, which means a) no nursing for 24 hrs (I knew this was coming) and b) I can't touch my baby for a certain number of hours (to be told to me upon discharge) afterwards. This I was not aware of and was very glad that the woman at the PET center knew to make me aware of it (This is one reason I'm so glad that my nursing status was shared). Next comes an Echocardiogram on Monday, a bone marrow biopsy on Tuesday, and a pulmonary test on Wednesday. After all that, hopefully they will have all they need.
Well, at least the baby will have fun on her Grammy and Grampa outing all day tomorrow. I know my dad is very excited. Hopefully she will sleep well and not be too cranky.

Processing...

2011-01-28T07:58:00.000-08:00

There is a lot of thinking that happens when you find out you have cancer. For the first couple days I really just didn't want to talk about it. I wasn't in denial, I just felt like talking about it was so depressing. I'm a really positive person, so depressing things just aren't popular topics of conversation for me. Plus, I still don't know a lot about what the whole "process" is going to be; staging, treatment, etc. For now, I just want to learn what I can about the disease, figure out what my course of "action" is going to be, and prepare for treatment. Can't I still have a normal life even while going through cancer treatment? Sometimes I feel like everyone thinks that's impossible.
I've been slowly telling family and friends. I feel like it's not something you tell someone in an email, and it's definitely not a Facebook status announcement. I hate the facial expression that comes after the revelation. It's hard to describe; it's like a combination of shock, pity and concern. I know I shouldn't be looking for a "hey let's have a party" reaction, but it just brings everything back to the depressing mood. I just wish I could telepathically tell everyone and not look at them when they found out. I feel like it would make it easier. I hate being sick, and I hate hospitals, so I'm already 0 for 2 on that front, but I just want to get through this as "normally" as I can. I don't think that's too much to ask. Or maybe it is. I guess I'll have to wait and see.

D-day..... Diagnosis

2011-01-25T18:38:00.000-08:00

Nearly 8 months ago, I gave birth to my beautiful daughter. It was the beginning of my new life - a proud and happy stay at home mom. As all new moms, I've had my ups and downs, but I have been happier than ever watching my little baby grow and learn every day. Taking care of her fills me with a joy I have never felt before.

Today, I was told the results of my lymph node biopsy. I have been diagnosed with Hodgkin's Lymphoma. All I could think about in the doctor's office was my helpless little baby at home. How can I give her 100% of me, when some of me will have to focus on healing myself? I feel like I'm about to be torn in two very different directions, both of which will require my full attention. But being a parent is full of challenges, this is just one on my list that's not on everyone else's. I have to stay strong and with the support of my family and friends, I will get through this.