Last night as I held the vomit bag in front of Dylan’s mouth, tissues in my other hand, simultaneously cradling his head on my belly, for the second time that day, I thought about the vast contrasts in this journey. He is better yet still sick. In fact he is in worse shape than he was a year ago, and if truth be told a year ago if left untreated he would of most likely been dead today, if not dead most definitely been in a much worse reality.
My heart aches with the paradox of this journey.
If you do sign for treatment there are so many possible side effects it’s mind bending and physically sickening, you can’t even bring your heart into it because that is just too hard to feel. And if you don’t sign off for treatment then, well, ‘no one has done that in these circumstances’, you want to give your child the best odds of surviving and no treatment means less than a 30% chance of survival. “If chemo kills off everything, why did I have to have radiation as well” asked Dylan softly – as the oncologist struggled to find the most suitable answer, we waited and waited …. Because all the trials indicate that this is the most successful route to take at this given time. Actually that’s exactly what all this child cancer treatment is, it’s a trial, an experiment, it’s not a cure. You sign up as an experiment, there’s a list of likely outcomes, and a longer list of possible side effects. There’s no guarantees, just lots of life long follow up tests and checks.
But with treatment comes the risks of permanent damage, disability and death. Dylan asked about the treatment, why he needed it, why he needed to have both radiation and chemotherapy, he was very involved in the decision making, including the decision for the fertility preservation. Yes, at thirteen he had to make a decision about having a testicular biopsy – chemotherapy wipes out fertility, not always but most children having treatment for cancer are left infertile – just in case one day he wants to have a biological child, there’s no guarantees that this technology will work, but if there’s life there’s hope, so you pay to store this hope of a maybe, “maybe one day I will want children, if I knew it was going to be this painful I might not of done it, I don’t even like little kids, but I did it for my future self” pondered Dylan out loud.
So now while his body works to repair the damage done by the treatments that have left him battered and bruised, but most likely saved his life, he tries to integrate back into the life of an average healthy thirteen year old boy, he tries to reconnect to a life that has passed, to experiences missed …. Just so he can be a normal teenager with a normal life. “I just want to feel normal again” pleads Dylan as he vomits again.