This is where I am right now; sitting in bed with Curious George, eating carrots in my new favorite bowl (bought at a thrift store for $2). I ended up here after having a total and complete melt down over some over spicy cream of broccoli soup. Yup. Soup. I guess it was inevitable that I would end up here. Somehow the day just wasn't going quite right, and there were a few times I almost went over the edge. The day was doomed no matter what, so I guess its good I got it out at some point, albeit over what was supposed to be dinner.
Today started ok. We had to go to the Jimmy Fund to get Saoirse's genetic and autopsy results. We were dreading the trip. It's hard to even drive down the road (and I wasn't the one driving). We got there and met with Judy (our social worker), Esther (Dr. Obeng) and Susie (Dr. Shusterman). Good news #1: Saoirse had no genetic predisposition to NB! This was the biggest stressor for us. With the way our family history was coming together and drawing up, we were very concerned that she inherited some genetic mutations from us that made her more susceptible to NB. This is not the case. The best part of this news is that it means that we don't have to worry (as much) about our future kids having a higher chance of getting NB. Good news #2: We knew that Saoirse's tumor was very aggressive, and in the end had presented in ways not common to the disease. When we asked for the autopsy to be done, we expressed that we wanted her to help other kids by letting doctors learn from her cells and her disease, so that hopefully they can find a way to save these kids. We found out today that blood samples from her carrying her tumor cells were sent to a researcher in Texas who is compiling and saving (growing and freezing) NB cell lines for further study and future testing. Her cells will be used to test new and future drugs to see if they can be a good fit for kids with resistant and aggressive disease! She is already helping to save more kids! We are very proud of this. We did the autopsy so she could help them learn from her disease, and help to further the research needed to save more kids and find a cure for this killer. We feel like she has a huge chance of doing that now.
The final thing we found out from the doctors is that the reason for her labored breathing and horrible reaction to the intubation was that NB had taken over her lungs. Like her liver, there were no large masses of solid tumor, rather the NB cells had taken over the lung cells and dispersed throughout. Her doctors were shocked, and both got to get a good look at her lung tissue under the microscope (we allowed the morgue to keep her organs for further study). They have learned so much from her, and hopefully they can use it to help more kids down the line. Somehow this brings closure to the way she died. We were so concerned that it had been a mistake that had lead to her lungs no longer functioning, but we now know this was not the case. Her lungs were too heavy with tumor to work. No amount of pressure from a pump was going to keep them delivering oxygen to her body. They just weren't working. Her liver was weighed and rather than the expected 300 grams or so, it was over 1600g. That's how much tumor was there. I feel horrible for the amount of pain that she must have been in. She knew she couldn't do it anymore. She just wanted to rest. "All done" she said, "sleep." Sometimes I wish we had just taken her off all the machines and let her go on her own. But we wouldn't have won either way. Either way we would have regretted as much as the other. I just wish I had held her hand when she went.
I'm getting my port out tomorrow. As I was sitting her sobbing I told Mike I didn't want to go. It's not that I don't want this stupid thing out of my chest. I guess I don't want to be better. It's not fair that I get to be better and she didn't get that. She never got to have her line taken out. She never got to have a super fun splashy bath. She never got to have an "All Done" party. She only got one Christmas, one birthday. She didn't get to tell her story in a college essay to help her get a scholarship. She didn't get to make her own friends, pick out her own clothes, make her own lunch, walk the dog by herself. She'll never be able to stick up for her siblings, or tell them how to be cool. I hate that they will never get to know her. I wish that she could have had the simple disease, that she could have been the one who was easy peasy, and done after 6 months. I would have taken all her pain. All her struggling. All her suffering. I would have been miserable for her for as long as needed. I am her mother. And she is my baby.
I am more determined than ever to put up a fight for the real cure for NB - finding what in the environment is helping it grow. I am determined to work on the other side of treating cancer. Food, water, exposures, stresses - I have to spend some time and effort on bringing awareness to the things that are causing this horrible disease. Funding needs to be given to that work, and those ideas too. If we could find how keep NB from growing in the first place, and help the body fight it off on its own, like its supposed to, we could keep these kids from both the horrors of the disease and the horrors of treatment. These kids could get their childhood back. That has to be the goal. Why can't I be the one to get us there?