A year ago, I started writing in this digital journal, at the urging of some, to document the trials and tribulations that had befallen my small, familial unit. Not as a way to process or vent or even educate on the various and new situations that my wife and I were rapidly becoming familiar with. No, I started writing this blog to record the battle my son was currently engaging in, a duel, to the death, with his own body. It was a good way to inform a large amount of people of any new changes that arose during Jayne's chemotherapy, any and all challenges that he overcame as they hurtled his way, and to reflect just how amazing my four month old son was in the face of this monstrous and terrifying set of circumstances.
We are still many years out before Jayne will ever become fully aware of just what this past year has meant for him, to us, and to countless other interested and well-wishing persons. He probably won't every really have a true, working appreciation for the impact that this has had on his family, nuclear and extended, and the implications that it had on his young life. We can hope that he will never again have to deal with the needle, with the chest tube, with the clean room and health restrictions, and, much to his chagrin down the road, the legion of nurses monitoring him.
It has been a year, now, since that fateful phone call from Jayne's doctor, telling us to rush down to Phoenix Children's Hospital to have further tests conducted, and our lives were turned upside down abruptly. It has been a year since we were told that Jayne had leukemia, it has been a year since we were told that he had AML, one of the nastier forms of Leukemia prevalent in children, and one year since he received a tube in his chest so that he could begin his chemotherapy. My wife and I were told, quite often, that we were handling it very well and that it was admirable behavior on our part. In reality, our reactions were mingled shock and resignation. After all, we had taken our son to one of the best children's hospitals in the country and entrusted his health to the professionals that worked there. We spoke with many doctors and nurses, all of whom explained everything that was going on clearly and concisely, they answered all of our questions, and they were all very gentle and sensitive to what we must have been going through during these debriefings. We were told of the risks, the side effects, the efficacy, and the implications of both the disease and the treatment through which Jayne was to undergo. We didn't have, realistically, have any other choice than to accept the reality of our situation and to just be there for our son.
Jayne was four months old when he received his broviac tube, a shunt that was placed in the right side of his chest that tapped directly into one of the major arteries in his little body, to help facilitate the chemo and any tests that would required during his treatment. He performed admirably, for an infant in his position, and he took all of the needles, the prodding, and medicine in stride. He was brave and happy and sweet, just like he had been since his birth, and he stole the hearts of many a nurse and tech. Jayne lost his hair, his eyebrows, his eyelashes, but he never lost his smile.
Shay and I transplanted our lives from Show Low to Phoenix to be with our son and the amount of kindness, charity, and support that the three of us received from our parents, our families, our friends, our employers, and perfect strangers was staggering. It still is, to think back on it. I can't express in words, verbose and self-absorbed as I am, just how much it meant to me to receive such an outpouring from people, known and unknown, the instant that they heard about my son's ailment. I know that Shay was in a similar position and I know that it was that ocean of love that helped us stay afloat through the storm we were to endure.
It has been six months since Jayne was released from the hospital. We still have to go to Phoenix every month for a blood test. Even for these tests, which require a needle since Jayne's broviac has since been removed, Jayne impresses. He doesn't enjoy the sensation, who would? But he accepts the discomfort with a near-stoic level of poise. It's impressive, and gratifying, to watch this very young boy, this toddler, maintain his calm much better than some adults might, let alone other children years older than he. And for these last six months, Jayne has remained cancer free. His immune system, while still weakened, is slowly rebuilding itself, both from the leukemia and the chemotherapy. Jayne has been given his first round of dead vaccines, which eases our mind to the slightest degree, but he still cannot join the general population of children.
In the six months that he has been free from the IV stand, he has turned into a little boy. His hair is grown back, disheveled and wild at the best of times, his teeth are popping through at an incredible rate, he is a veritable vacuum cleaner at the dinner table, and he's improved his flirting style dramatically. He's an amiable boy who has a smile for just about everyone, a kiss for all of his family, and big brown eyes that still melt his mother's heart. On top of all that, he is bound to be a fantastic older brother, which is set to become official this June, and he cannot wait until he can start talking, just so that he can let everyone know how amazing he is.
Having said my peace, I have considered continuing this rag as Jayne grows and moves further and further away from his days in the hospital, bald as a cue ball, and for nearly the same reason as I began it. Not to vent and rail (there is enough of that elsewhere these days) but to chronicle my son's growth and warrior's spirit. It may seem self-serving to do so, but the way I see it, Jayne is not going to be the last kid diagnosed with cancer. He won't be the last baby born with leukemia, Shay and I won't be the last parents to be forced to watch our child, infant or grown, struggle with cancer and with chemotherapy. In fact, I know that he won't be. In the US alone, there is a new case of blood cancer (of which leukemia is but one form) diagnosed every 3 minutes. I don't have any illusions that my style of writing or take on my specific situation will resonate with every single parent of every single child who has been diagnosed with cancer, but my hope is that, on that day that their lives are turned upside down, that the sun goes out and the oxygen leaves the room, that, maybe, they can find this and see that it isn't the end. It isn't a death sentence, not in this day and age, that is won't adversely affect their lives indefinitely, and, most importantly, it is not the end. There is still a fight ahead and it is a fight that can be won.
I can't build a boat for everyone, but maybe I can provide a buoy.
