Wednesday, August 31, 2011


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

Saturday, August 27, 2011

Force Feeding

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

Summer Fun

We have managed to get a few fun, summery things in this year, even with all the extra hospital time. We took a short canoe trip down the street from the house. It was short because we got stuck between two beaver dams (oops!) but for a first trip for Saoirse, it went well. She wasn’t too sure about the life vest, it is pretty much the size of her, and makes it pretty uncomfortable to sit. I ended up having to hold her in my lap, but she liked that.
After we got out of the hospital from the mucositis, we went camping. We have been trying to go camping all summer, and it never seemed to work out, so we were very excited to go. We just went a few towns away, to Gloucester, and stayed at a really lovely campground. Saoirse loved playing in the dirt and running around. She wasn’t so sure about the tent at first, but when she figured out how to go in and out, she thought it was a fun game. For the most part we had a very smooth trip, but I’m not sure the other campers appreciated the 1am screaming at the top of her lungs. But other than the lack of sleep, things were great, and we can’t wait to take her again.
We have also been playing outside as much as possible when we are home. We have a few play structures in the yard (the neighbors were getting rid of them), and she loves climbing and sliding on the slides. She also has a swing in a tree that she loves. We have gone to the park a few times to meet the other babies, and that’s always fun, but I’m always leery of the germ thing on the play structures. The park has some animals though, and she loves watching the horses and the sheep. Saoirse loves playing outside, and usually gets her hat and brings me my shoes, before rushing to the back door in the morning. She even pulled me out in the rain one day and loved every minute!
The only thing that I feel we have been missing out on is swimming. Saoirse can’t be submerged because of her central line, and sadly she has a great affinity for the water. She gets quite upset when she is near water and can’t play in it. Even bath time is hard because she just wants to splash and play and we have to keep her from getting too wet. Normally we would have spent a lot of time at the quarry this summer, but we have only been a couple of times, because it’s hard to keep her out of the water. We made the mistake of going to the beach one day. I thought she would like playing in the sand and that it would distract her from the water, but she really wanted to go into the ocean, and wasn’t too interested in the sand. So total flop, but there’s next year. We’ll have to find an indoor pool somewhere once her line comes out so she can learn how to swim.
Even though we haven’t been able to have quite as many adventures this summer as we could have, Saoirse has still been able to experience a lot of what summer has to offer. I’m sure we’ll even add some more before the summer is over, and then comes the lovely fall – when it’s nicer to be outside because it isn’t so hot! 

Thursday, August 18, 2011


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

Weeding the garden

Picking vegetables before they are overgrown

Mowing the whole lawn

Watering the plants

Vacuuming the house

Washing the dog

Painting the fence

Food shopping before running out of food

Painting the house

Organizing the office (or anything else for that matter)

Miscellaneous home repairs/improvements


Date night

Sleeping through the night

Things that happen every day when you are battling cancer…








Sunday, August 14, 2011

The Mom Card was Pulled

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

Thursday, August 11, 2011

Mysterious Ailments

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

Monday, August 8, 2011

Energy and Itching

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

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

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

Tuesday, August 2, 2011

Cookouts and Chemo 4

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