From my other blog which I started to dedicate to following my son’s battle with pediatric brain cancer.
I never thought I’d say the words, “Thankfully my son started chemo today.” Because no one should be happy that her child is receiving chemotherapy. Because in that case obviously something is very wrong. Something has gone awry, and bad. But I say that I am thankful because for the last month and a half we’ve been waiting to know if chemotherapy was even an option.
See there was a time when the doctors thought Doodles wouldn’t even make it this far. He was “neurologically devastated” and they weren’t sure if he was “salvageable”-because he’s a car or sunken shipwreck. We were told he “wasn’t going to get better” and that they were just planning to sustain him and “keep him stable.” We were even told they might have to “just let nature take its course”, to which we replied, “That is not an option.”
Because we knew what they didn’t know, and although they were reluctant to believe us, we refused to let Doodles go down without a fight. We saw what the doctors didn’t see. We saw that he was “salvageable”, and that he was conscious, responsive, and aware. We knew he was there.
I’m sure we were regarded as over-optimistic parents refusing to accept reality. I’m sure there are sadly many parents who might have taken the doctors’ words as testament and went along with whatever their plans were. But we’re stubborn and very hard-headed. And so is Doodles.
We had a long discussion, he and I. I told him it was very important that he start showing the doctors that he was a strong man and that he was getting better. I told him it was the most important thing in the world. Whether he understood me or not, I don’t know, but he did what I asked. When the neurologist came to asses him she spent less than five minutes before she decided he was, in fact, not “neurologically devastated”, and that he was very much aware and alert.
Doodles finally got his tracheostomy and his g-tube (something that was delayed because the oncologists who originally looked over his case decided there wasn’t much they could do), and although he is still on the ventilator, he is breathing over the machine at almost twenty breaths a minute. They are now weaning him off the ventilator, something we were told just weeks ago wouldn’t happen.
The hem/onc team wasn’t sure if they could or would start chemotherapy simply for the mere fact that they assumed Doodles wouldn’t recover and that it wasn’t feasible. To them it seemed more feasible to let him expire, I suppose. But it wasn’t feasible to us, and certainly not to Doodles.
So today I say that I am thankful that my son started his chemotherapy because it sure beats the hell out of the alternative.
I want to add that not all of Doodles’s doctors were so fatalistic about his condition, and I’m very grateful to those who voiced their opinions and were his advocates in opposition of those doctors who were ready to close the book on him. I also want to acknowledge the many great nurses, physical therapists, respiratory techs, and other staff here who have taken to Doodles so much so that they check in on him and ask about his progress even when he’s not their patient for the day.