It's been a long time since I have posted. Some of it is time, but some of it is that I haven't had the heart to write. This has been a time of ups and downs, wins and losses, giggles and tears. We are riding a roller coaster and while the ups are so exciting, the downs can make you sick to your stomach.
Saoirse handled radiation like a champ. She finished it out, and everyone could see the major improvement in her head and eye tumors. She was eating and playing, even though she was sleepy. We finally felt like we were making some headway. She was visibly getting better, and we were glad to start to see our little girl come back to us.
Then we had a turn. She went into clinic and her electrolytes were all off. Her Sodium was low, her potassium was low and she was constipated. We were back in. This was rough because Mikes parents were in town, and I felt horrible that they were going to miss so many days with her. They gave her IV boluses and she started to perk up. She ate, pooped, played, pooped, and ate some more. Her levels went up, and they took her off of her hydration and she was truly Saoirse for six glorious hours! We had our baby back! She was running, and giggling and playing and laughing out loud, and talking and interacting. It was amazing and i was so excited to see her like that. I spent practically the whole time upset at the doctors and nurses and didn't enjoy it as much as I should have. It was short lived.
After her nap, she was miserable again. They checked her labs and her sodium had dropped. They waited it out a bit longer to see if she would rebound, but she stopped eating, stopped playing, stopped pooping, and it was back to lying on the floor and force feeding. With a later lab check, her sodium had dropped, and they put her back on fluid and started to work on a new plan.
Admittedly this was the worst night for me. I was frustrated, upset, angry, sad, defeated... the list could go on. She is so fragile, and I just want her to feel better. I am sick of the hospital stays and the unexpected changes. The unknown is so hard to deal with, and right now, that's all we have. There is no plan, its wait and see. I'm sick of waiting, and "seeing" never seems to pan out to anything good. I felt like I wanted to give up, to stop torturing her with the treatments and the hospital stays, and the poking and prodding. But she didn't deserve that either. I talked to the doctor, and she explained the plan, and I felt much better about how they were going to handle her treatment. She came home with us the next day, on a new plan, and I was hopeful that she would start to perk up in a couple days. We had a few glimpses of her playful side, and she seemed to maybe be turning around. But it didn't last.
She was having constipation issues, and we tried and tried to reduce her bloating. By Monday, she seemed so full of gas, that we thought she might have a true obstruction. We were worried that it would be toxic if she didn't move it quickly. We called and asked to see a gastroenterologist, and we were sent for an ultrasound at the peabody children's location. They saw that her liver was enlarged, and that one of her veins was narrowed and causing her to retain fluid. They said they didn't see any masses, but that it was concerning that her liver was so large. We were called in for a CT the next morning, and lab work in the afternoon.
More hurry up and wait. We were frustrated that we had to initiate the scans and that the doctors hadn't expressed any concern for her large belly on Monday when we were in clinic all day. If its not one thing its another, and we are just tired of all the back and forth and waiting for catastrophic events to happen in order to starting looking at her more closely. The CT showed the enlarged liver, but again no obvious tumors. Still no answers. We went for an additional ultrasound to see if there was any evidence of a clot anywhere that would be restricting the blood flow through her liver. They didn't find one. Still, no answers. Her condition was obviously precarious, and she needed to be watched. We were admitted.
There was a lot going on, and we were feeling the crunch. We were nervous that with the week coming to an end, and a lot of things not available over the weekend, we were going to miss the opportunity to get a leg up on what was going on. There were two possibilities - one is that the neuroblastoma is throughout her liver and that the cells have caused it to become enlarged, and the second is VOD (veno-occlusive disease) which is a side effect of chemo therapy. The only completely conclusive test would be a liver biopsy, but the doctors were not sure that she would be stable enough for one to be done. We had to go to bed that night knowing that we would not know answers right away. This was hard, but we knew that they were working on a plan, and that the plan would be complicated and involve a lot of new and different doctors.
All day today we didn't have many answers. We asked a lot of questions, answered the doctors questions, had a lot of examinations, and started to try and piece things together. They gave her some lasics to try and release some of the fluid from her legs and belly (she is up in weight over 5 lbs), and they gave her some red blood cells because she was quite low. Over the course of the day we met some of the different doctors, and waited to hear if she would be able to have a biopsy or not. They got her MIBG scan scheduled, and managed to get the marker to the hospital (which is a feat with twelve hours notice!), and she was injected for a scan on Friday. We were so glad to be able to have this happen. We really think that it will help to see what is going on sooner and safer than some of the other options. She will also have planning done for radiation so that if it is NB, she will be able to start radiation immediately. We are encouraged by the response in her skull from the last round of radiation, and we are hoping that if it turns out to be NB, it will respond as well to radiation. More waiting, but at least we have a plan.
Right now we feel like we are chasing her disease. We can't seem to get ahead of it, and it is taking turns that the doctors don't even know how to look for. It seems to not want to follow any of the things that are readily available, and it seems like it's got a head up on what we are going to throw at it (maybe its a little bit psychic). We are hoping that soon we can finally get ahead of it, and kick it down once and for all. Right now, we just need to figure out what's going on in her enormous liver.