What I'm about to say is incredibly ridiculous and so I should apologize in advance, but in many ways, I was more comfortable during the first phase, the phase where she still had cancer, than I am now that she has no cancer at all. At least then the risk of relaps didn't exist.
98% of children are able to reach remission by the 29th day of treatment. Not all of them come out MRD negative, but for all intents and purposes, they (mostly) all reach remission. It is AFTER remission that things have a greater potential to go south. If ALL relapses the treatment required goes way up and the rate of survival goes way down. I'm not telling you this to ruin your day, I'm telling you because it's important to understand that Brooklyn still has a very long and scary road ahead of her. The first year after remission poses the greatest risk of relapse and in five years, if relapse has not occurred then she will be deemed "cured". She will be 7.5 at that time. Until then we really have no other option but to push forward with treatment and pray like hell that it doesn't come back.
The cure rate in the US currently lies somewhere between 90% and 95%. Reading that I'm sure you're thinking "great odds!", however upon hearing that my kid had cancer my mind went from "Yay, my kid has a 95% chance of surviving this thing!" to "Holy shit, there is a 5% chance my kid might die from this thing." and let me tell you, that is a very dark and ugly place to let your mind wander. Like my husband says "it comes in waves" and for the most part it's easy to stay optimistic about everything. But once in a blue moon you get caught at a vulnerable moment and your thoughts get the better of you.
If I may be frank, I fucking hate what this disease has done to our family. I hate that this disease has come after my kid, and I hate the fact that the delusions I have of my kids forever and always being happy, healthy and outliving me have been crushed like this. I can tell you with 100% certainty that the absolute most horrifying thing in the world is to be faced with your child's own mortality. No one should ever have to experience that.
I know that we will get through this, and that one day this whole nightmare will be just a distant memory. Brooklyn is too strong willed and hard headed to fail. But right now it feels like we are walking a tight rope and I am not comforted at all by that.
But please always remember you are not walking this tightrope alone, we are all with you and are just as scared and frightened as you are but again with the hope that we will make it through because we are all there together (as your last post shared).
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