Tuesday, May 31, 2011

Home Again, Home Again, Jiggity Jog!

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

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

Sunday, May 29, 2011

The View from Within

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

Friday, May 27, 2011

Chemo Times Two

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

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

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

Tuesday, May 24, 2011

Schedule Changes

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

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

Friday, May 20, 2011

Fevers and Fundraisers

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

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

Monday, May 16, 2011

Sleep is Alluding Us....

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

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

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

Friday, May 13, 2011

Home Again, Home Again, Jiggity Jig!

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

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

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

Tuesday, May 10, 2011

A Sneak Peek at "Normal"

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

Sunday, May 8, 2011

The Testing Continues

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

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

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

Friday, May 6, 2011

Another Hit in the Hit Parade - D day #2

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

Tuesday, May 3, 2011

The Saga Continues...

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