Friday, September 30, 2011

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. 

Tuesday, September 27, 2011

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. 

Friday, September 23, 2011

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. 

Sunday, September 18, 2011

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!

Thursday, September 15, 2011

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. 

Tuesday, September 13, 2011

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. 

Wednesday, September 7, 2011

News and Nerves

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

Thursday, September 1, 2011

A disposable life

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

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