There Should Be More Math. This Should Be Mathier

It is time, yet again, for another sporadic check in from our clan.  I know it has been a little while between posts, so I hope that someone is still interested in hearing how our intrepid hero, young Jayne David, is fairing.

Last we heard, Jayne was performing excellently on his blood tests, showing no signs of the cancer rearing its ugly head.  His immune system has also been recovering, however slowly, giving us hope that, one day, he will be allowed to a normal child yet again.  He has shown no signs of complications from the chemotherapy that he had to endure last year; his growth and development are still going strong and he seems to be learning something new every other minute.  My one fear that Jayne wouldn't be able to develop on a social level anywhere near the same pace as healthy children his age, have proven to be a bit too pessimistic.  Sure, Jayne can't do many things that kids can do.  He can't go to the park, he can't spend a bit of time in daycare, he can't get on an airplane, and he can't go to Disneyland.  This last is probably the most egregious deficiency in our young man's life.  And not just because his parents are in desperate need of some time in that paved over orange grove.  He's not quite at the age where he would remember the trip with any sort of clarity but he does have a sense of wonder and enjoyment that would absolutely benefit from visiting Disneyland.  Ah well, maybe in five years, kid.

Of course, all this talk of what Jayne can't do after his struggle with leukemia alights upon something that Jayne will never be able to experience, as I did when I was growing up.  On April 17th, my grandmother, Grace Dix, passed away after several years of engaging in her own struggle.  In her case, the looming and terrible monster within was dementia.  I have a lot of emotions tied in with the passing of my grandmother, whom I considered to be a very excellent woman.   A good chunk of my childhood memories are wrapped up in my grandmother's house, full of porcelain dolls, asian art pieces, and the ubiquitous little dog.  When I first heard from my mom that Grandma Dix had passed away, my initial reaction was that Jayne would never get to know her.  And, due to her illness, she would never know that her great-grandson had kicked cancer's ass at such a young age.  She wouldn't get to know how brave he had been; how strong, and how charming he was through all of it.  He would never have the opportunity to call her Grandmama.  And while I understand that those sentiments are a bit far-fetched, because of the age difference and the ravages that the brain can do to itself, it is still the hardest reality to accept.  I spoke at her funeral, I helped bear her body to her final resting place, and I said my goodbyes, until our atoms all recombine an unfathomable amount of time hence.  And I suppose, in keeping with the cyclical nature of life and death, Jayne does, on very rare moments, do some things the are very reminiscent of my grandmother.  They would have been pals, I'd like to think.

Well, that really brought the room down, didn't I?  I apologize.  I've wanted, needed, to get that off my chest for about a week or so.  In truth, that's what really spurred me on to write this and not put it off continually because my son thinks all keyboards are his to toy with.  Long in coming though it may be, the timing works out, considering our current circumstances.  As I announced to everyone last go around, our next (and final) child is fast approaching us.  Sometimes, much to our great joy, at other's... more to our chagrin.  Either way, Jayne's sister is rapidly coming to spoil his paradise known as sole focus of attention.  And, preceding that joyous occasion, as is usually the case, is a series of potholes.  The largest of these appears to represent a rather large, and blue, shield and cross.  Attached to the bottom of these, is a rather inconvenient bill.

For two months, we have been fighting with our newly acquired insurance company to recognize that the hospital that helped Jayne purge every trace of cancer from his body is also the best place to take him for every follow up visit.  This has caused no end of stress, frustration, despair, and desires to just say "Fuck it!" and move somewhere with a comprehensive healthcare system.  I'm not going to use this opportunity to get political, this is neither the forum nor the appropriate time for it.  I expect the rest of you to follow suit.  What I am trying to say, though, is that our little unit is in a bit of a bind.  We can only play with the cards that we are dealt and while genetics did truly and utterly screw us, we have to make do as best we can.  In so saying, I would need to be committed to a state hospital if I would let my pride harm my family in anyway.

After the superhero mayhem that sponsored Jayne last June, all of the shirts and wristbands were donated to us by the organization that put the entire fundraiser on.  On top of the money that was raised and matched, it was incredibly generous.  That said, what exactly do you do with two hundred of the same shirt?  I propose that you, yes you, buy one.  The wristbands are orange and declare, "The boy they call Jayne!", the rallying cry of the Superhero Mayhem last year.  The t-shirts have a little bit of lyrical poetry about Jayne on the front and sponsors of the run on the back.  In addition to being stylish and cool, they are fairly comfortable as well.

If you would like to continue to help Jayne with his frequent hospital visits, or just get some cool additions to your wardrobe, the shirts will be $15 a piece and the wristbands will be $3 for one or $5 for two.  I can't promise that this will be the last time I bring this up, but I do promise that I will try not to shove it down your throats at every opportunity I get.  After all, you're probably more interested in our growing little boy.  And why not, he's pretty freaking adorable.

Through The Looking Glass

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.