Monday, October 31, 2011

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!

Thursday, October 27, 2011

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.

Monday, October 24, 2011

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!

Thursday, October 20, 2011

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!!!! 

Wednesday, October 19, 2011

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. 

Sunday, October 16, 2011

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. 

Friday, October 14, 2011

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!