Sometimes I feel like its all a dream. Like I'll wake up and it will have just been a horrible nightmare that I won't have to remember for more than a day. I keep wishing that real life was like a Lifetime movie, where you are shown the consequences of a choice and then go back and can make a change. I feel like if we had known just a sliver of what we know now about her disease just a month earlier than we did, we could have changed something.
I know I shouldn't get stuck in the what ifs, but its so hard. If she had never been clear, if we had never heard NED, I think it wouldn't be as heart wrenching. I feel like we missed our chance; like we had our open door and we let it shut in front of us. This is the feeling that haunts me. This is what made the holidays so hard.
I can't let this happen to another family. I have to start getting this information together to help other families. We need to get parent advocates in every hospital for every disease - someone who has been there and can help sort through the information right at the beginning. Someone who can help by sharing the information that is out there and point that family in a direction that is right for them and their child. Doctors need to be more forthcoming in the information that they share with patients, and not pussyfoot around issues that are "hard" to talk about. They also need to be willing to work with other doctors and hospitals to design care plans that are more individualized for their patients, and less "cookie cutter." Some diseases, like Hodgkin's, have a tendency to do the same thing most of the time, but Neuroblastoma is not one of those diseases. If we don't share individual experiences with others, there is no way that each doctor will see the many mutations and courses that this disease can take. Rather than competing for patients, consortiums and oncology groups need to work with each other to tailor treatments for the patients they see, using all the resources available, not just the ones at their hospital.
Here is my example. Recently, I spoke to a woman from Connecticut who also lost her little girl to this horrible disease at the beginning of December. I was glad to talk to her, as I felt like I needed to share my feelings with someone going through the same things. Sadly, her story is almost identical to Saoirse's, and towards the end, they experienced very similar, inaccurate "symptom management" from their doctors. While Saoirse's doctors were telling us that her disease was not looking like anything they had seen Neuroblastoma do before, there was a little girl in CT who had just lost her battle in the exact same course of events just weeks before. Now, you may say that there is no way that this could have been put out to the world of doctors in time to save Saoirse, or to even help in her treatment in any way, but I challenge the fact in the advent of social media and the internet. If particularly difficult and abnormal cases were presented on something like a Facebook group for NB doctors, there could have been a connection made as soon as a post was read.
There might be a benefit to the fact that only 600 - 700 kids a year are diagnosed with this disease - social networking would not take all the time of a doctor or advocate to sift through the individual situations. And if parents gave the early symptoms that they experienced with their child, pediatricians could more easily find and learn what to look for in their patients and do the early testing (yes, there is a URINE test for NB!) that might help to diagnose these kids earlier and give them a much better chance at survival.
With all the advancements in cancer treatment over the last 40 years, it is sad that more and more kids seem to be diagnosed each year. We should find out more about these kids and how they are developing these diseases, and work to find the answer to why they get a disease and other kids don't. I'm not happy with the "we don't know the cause" answer so readily given out by doctors. There has to be something, and with all the technology out there today, I think we should be able to figure out what in our environment is making these kids develop this evil inside of them. I, for one, am going to be throwing away our cleaning chemicals, and starting to eat organic and less processed.
That's my rant for the day. I suppose I have found a direction for some of my frustrations, and now i'll have a place to direct my efforts.