Christmas wishing

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

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

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...

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

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"...

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....

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.....

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!

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

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

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

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

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

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!

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

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

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

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

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

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

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

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....

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.