An Old Blog, A New Year, A New Cause

This is a fairly evocative picture.  It's one that most of you are probably familiar with, even by reputation, if not necessarily this particular picture.  This is Jayne, 2 years and 7 days ago, after getting his first bath with his newest accessory.  The two tubes sticking out his chest were so that the chemotherapy could be administered without needing to puncture a vein each time.  These tubes go directly into cardio-vascular system by way of the neck.  They were used to give him blood, plasma, antibiotics, medication, and to put him under.  The clear patch at the top of the bandage is where the tubing actually enters Jayne's skin and into the vein.

Look at it for a second.  Examine, if you will, the pad that is there to keep the tube looped just in case the baby, who relies on this gateway to his heart, finds the urge too much to resist to yank this apparatus out of his chest.  Notice, if your eyes permit you, the plastic caps placed upon the red and white nozzles.  Those are there because, if any bacteria were to get in the tube, it would instantly have access to his blood stream.  Take note of the fact that he, the boy they call Jayne, is more interested in that monkey than anything else going on.

There's a hole in that baby.  And it helped to save his life.

Jayne is a healthy, little toddler now who sometimes seems like he is a descendant of the Tasmanian Devil.  He has a scar and some skin discolored skin patched as reminders of his stint in the cli(ni)k.  He knows that he sometimes goes to Phoenix and has blood taken, for which he is a lot braver than some of his grandparents might be.  He knows that he hasn't been to too many public places and that he has minimal contact with kids his own age, though that is gradually being rectified. 

In November, he got strep throat and it scared us to death.  You see, even though Jayne is healthy and cancer free, his immune system is still a scarred veteran of the war is endured with cancer and chemo alike.  He is more susceptible to infection than a 'normal' toddler and things such as the flu or strep could very easily escalate.  That week was the first time that we had had to give him medicine since being out of the hospital.  And it brought back very jarring memories of seeing our little boy laying in a barred hospital bed, hooked up to machines.  As a result of that, in January, Jayne was hooked up to yet another machine for several hours and given a transfusion that would help to boost his immune system.  His broviac tubes long since gone, our little guy had to be given an IV and needed to be kept relatively calm while the procedure played out.  Fortunately, Jayne was a trooper about it and didn't rip the needle out of his arm but I wonder if he was the exception, rather than the rule.  Still, it had to be done, to ensure that Jayne would be able to stay healthy, to have a somewhat normal existence in the wider world.

$9000.

That's how much it costs to safeguard a leukemia survivor of 2 years old.

$9000.

It seems a bit ludicrous, doesn't it.  And, on top of that, our insurance company has yet to cover it.  That is in regards to a large mathematical error that they committed when calculating our premium and it has taken them 2 months to figure out.  This isn't the first instance of errors negatively affecting our lives, either.

Four months of 2017, I have been fighting with the federal healthcare marketplace and our insurance company regarding the non-coverage of our daughter, Chloe.  I finally won the appeal in December but the paperwork still seems to be pending.  As a result, we have been denied claims for her doctor's visits, her immunization, and an emergency clinic visit when she was sick in October.

Did I also mention that Chloe might have a fairly serious heart murmur as well?  Yeah, they aren't covering any of her echo-cardiograms, her x-rays, or her cardiologist visit in Flagstaff.  I've spent hours on the phone trying to find out how someone could deny coverage to a newborn baby that hasn't done a damn thing to anyone.  I've emailed, I've scoured for documentation, I've made records, and I've pleaded with faceless voices who are only doing their jobs.  As a result of all of these... hiccups, we are now being told that we are in some pretty severe debt.

Shay and I have been slowly grinding away at this debt, which was much higher, for the past 9 months.  But Jayne needs to go to his check ups and Chloe still has a second cardiologist visit to go to.  We have resolved that we can't let the financial landslide keep us from taking care of our children.  Some people would probably think that we have some fairly spotty luck and I would agree. 

We live in a country that doesn't think it important to take care of sick children.  I know that socialized medicine is hot button issue and no wants to give ground on it.  I understand the issues brought for and against and I doubt it will be solved within the next decade as how that's going to happen, especially with the complicit sabotage of the existing, not-at-all-perfect system.  But scroll back up and look at the picture.  That baby's life cost, according to our current healthcare system, about .014% of an F-22 Raptor jet. 

There was always that cliche saying that "Children are our future."  Isn't it about time that we start investing in our future, as a civilized, modern society?  There is nothing more heartbreaking than a sick child, except maybe the parents of that child after they have passed away.  I have previously expressed just how it felt for me, personally, having to go through Jayne's ordeal.  I can't imagine the black hole that would be the loss of a child.  To watch someone, whose first word you heard, whose first step you were there to witness, slowly deteriorate into a shadow of that happy, little human being and to have be there when their last breath has expired.  I can't imagine bearing an undersized coffin to an undersized hole in the ground.  To lower it six feet down and then cover it with dirt.  And to still be expected to function properly after that. 

Accidents will always happen.  Death is inescapable.  Compassion, though, is what it is to be human.  There are a lot of issues that are hotbeds of argument and ugliness but this should not be one of them.  A family should not be expected to choose between medical bills and solvency.  A family should not be constantly harassed by debt collectors for ensuring the health of their children.  I'm not sure how to get that notion off the ground, but if Elon Musk can send a car to Mars, I'm sure I can figure this out.

Chloe, play us out.

 

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.

A New Hope

It has finally arrived.  After all of the time at the hospital, all of the pokes, all of the blood draw, and the bone marrow aspirates.  After all the chemo, the zofran, the bactrum, the biotine, and the cephepim.  After the line repairs and dressing changes.  After all of the watching and waiting, helplessly, it has finally arrived.

By which I mean the day that Jayne is officially cancer free and no longer a bionic baby.  His last MRD following his final round of chemo came back negative and we were given the go ahead to have his broviac taken out.  We arrived at the hospital this morning at 7, checked in, and waited until about quarter to 10 before the actual procedure started.  We went over all of the risks inherent in a procedure as low key as this one (which were minimal) and signed all of the paperwork involved (also minimal).  We put Jayne in his hospital gown, emblazoned with marsupials and rocket ships, and waved goodbye to him as the nurses took him back to his designated OR.

About 15 minutes later, we were called out of the waiting room for a consultation, where we were told that Jayne's broviac had come out with no difficulties and the hole in his chest, which has been an ever-present reminder of just how closely the beginning of our little guy's life has resembled a roller coaster designed by a sadist, would scab over in a few days, and then scar over.  After the consultation with the doctor, we were taken back to the recovery room where Jayne was already sitting up and biting a hole in his oxygen mask.  He was smiling and happy, as he always is.  He could have just awoken from a three hour nap on our couch.  He had a small bandage on his chest where the tube had entered his artery, a small patch of blood staining the otherwise snow white gauze.
And that's it.  What has been such an interminably long time, at least to the three of us, ended not so much with a bang but with a giggle.

From now until he's about five or so, we will be travelling down to Phoenix so that Jayne can get a check up and blood test to ensure that the leukemia is not coming back and that his immune system is recovering and stabilizing like that of any other normal, healthy baby.  Depending on how all of those tests turn out we may or may not have to continue getting yearly checks every year until he's a bit older, but the diagnosis of the day is normality.

I know it has been hard for people who know us, and who knew Jayne for the brief period of time before he was an inmate at Phoenix Children's Hospital.  After receiving the news that Jayne was declared to be cancer free, it much have felt like they were able to finally breathe again or coming into the sun after what seemed like an eternity within a pitch black tunnel.  I'll admit that knowing that this chapter of our lives is coming to a close causes me to be washed over with relief and an eagerness to move beyond and back to our lives.  But, if we're being honest (and I have no reason to think that the opposite would be true), I never thought that any other course of events would happen.  Even after the initial diagnosis and confirmation that my son had AML, I didn't accept anything other than this outcome.  This feeling of certainty wasn't blind hope or a reliance on some invisible higher power but trust in the people who we had decided to trust with our son's health, his very life.  There is a reason that PCH has received such high praise for the competence of it's staff and the treatment of it's patients and their families.  Every person that Shay and I came into contact with was incredibly competent, caring, and determined to get Jayne back to fighting strength.  Over the course of the 5+ months that we spent in and out of the hospital, I really do feel that the techs, the nurses, and the doctors all were extremely passionate about their work and were very dedicated to doing everything in their power to help out my son and to comfort my wife and I.

Indeed it wasn't just the staff of PCH which had fully procured my trust with my son's life.  The tireless research that has been put into treating cancer, specifically childhood cancer, has done wonders for the prospects of parents facing such a daunting, seemingly bleak, future for their family.  In 40 years, the overall survivor rate for childhood cancer has risen from a terrifying 10% to around 90% today.  That is phenomenal, even with the reality that incidences of childhood cancer have also increased within that time.  But the fact that a child who is diagnosed and treated for cancer is overwhelmingly likely to live rather not makes trust in the medical professionals, and the machinery behind them, incredibly easy to rely upon whenever a parent's mood turns dark.  And it would really be a disservice to all of the people that Jayne, Shay, and I met during the course of treatment and recovery to heap the praise anywhere but at the feet of all those wonderful people.

I do appreciate everyone who helped us along the way, who shed tears, sent support, worked tirelessly to set up the gofundme, the several fundraisers, and every effort to assist Shay and I in this indescribably surreal turn of events.  Know that my family loves each and every one of you for all that you did.  For following along with the blog, for melting over the pictures of Jayne on Facebook and Twitter, and for letting your heart bleed as Jayne went through the ups and downs inherent in chemo therapy and surviving cancer at such a young age.  You've seen him crawl and watched him tumble.  You've heard him laugh and you've borne his tears.  You've witnessed him overcome the spider's web of IV lines and you've seen him struggle with very real, very scary life-threatening situations.  He has grown up from a small, immobile baby into a walking, talking, flirting machine.  He's grown teeth, lost hair, and, finally, waved bye-bye to what we hope is the last hospital room he will ever be in as a patient.

Thank you all, once again, it's been a wild ride.  May the Force be with you.

Made By A Person Who Longed To See A Swan

This week has been a week of lasts.  Sometime this evening will be Jayne's last chemo injection.  It is both an immense relief and a subtle weight that is being placed upon us.  Obviously, everyone involved with our little boy will be ecstatic that he won't have to endure any of the further indignities and limitations that go along with chemotherapy.  I understand, as should we all, that this is but one step towards the end of the journey that has been the last few months.  It is not the definitive end and it isn't even the end of our days in the hospital, we expect at least 30 or so more days while his counts drop and then recover enough so that we can have his broviac removed.  But it definitely is very symbolic, this being his last application of chemo and it gives my wife and me the opportunity to actually begin looking forward to our life, interrupted.  We can see his first steps taking place somewhere other than a hospital hallway, we can hear his first word while he isn't hooked to an IV stand, we get to watch him grow up into the man that he is knowing that we jumped this massive hurdle once and that we have nothing to worry over in the future.

The weight that goes along with this, however, will never truly leave any of our shoulders.  Sadly, even Jayne must someday come to terms with the fact that he had cancer when he was a baby and there is a chance, minuscule though it may be, that he could wind up back in the hospital enduring more rounds of chemotherapy, hair loss, confinement, and isolation.  It's a difficult prospect as a parent, to know that one day you will have to sit down and explain this concept.  It will certainly take an effort of will from Jayne, with unending support from Shay and I, for him to come to terms with such a mind-boggling concept.  On that day, if everything works out the way it should (and given our track record, why wouldn't it?), I will show him this blog, I'll show him the archive of the gofundme donations, the letters, the heartfelt messages, and anything else that we have at our fingertips to show him that he didn't do this alone the first time and he will never have to.  While the medical portion of cancer treatment and recovery is solely between an individual's body and the medicine applied, there are components which have nothing to do with chemo or medicine.  The emotional side, the psychological aspect of confronting something so monstrous and intangible as cancer, can be devastating.  It will be our job, his family, his friends, he supporters, to keep his spirits up, to cheer him along the way, and be there for him.  Hopefully, after that is complete, we will never need to employ such a massive assault upon the gloom of the sick, and he will live all his days never remembering being hooked up to an IV stand for the better part of 5 months.

To shift gears a bit, something spectacular happened on Sunday: Jayne got to meet one of his heroes, Justin Gaethje.  Or, perhaps it was the other way around.  Justin was in Safford last weekend and called us to ask if he could come visit.  I think that he was apprehensive, since we had just been readmitted into the hospital on Friday, but his ANC was high and he was still in good spirits, so we told him to head down.  It was... touching to see the two of them together.  This man, who makes a living out of being a badass, spent the time blowing raspberries, playing peek-a-boo, and doing just about anything that he could to make our son laugh and smile.  For those of you who have had the pleasure of meeting Jayne in person, he can be a bit reserved at first, and he was when Justin first came in (though he didn't really take issue with flirting with his mom and sister quite readily).  But Jayne, being a good judge of character, had a good time showing Justin his one tooth, how he could walk, how he could sing and yell (the two are not mutually exclusive in his case), and just how big he really is (so big!).  It was a very satisfying moment, both as a parent and a human being, to watch the two of them interact.  Justin, who had never met either of us, had taken upon himself to help this sick boy who was inexorably chained to circumstances that were nowhere within his understanding or his control.  He helped set up an auction for Jayne, even managing several other items from his organization to join the things that Justin had donated.  The money from that auction, like everything else that has been proffered and donated since his diagnosis, immensely helped Shay and I get through this difficult time.  After seeing the very genuine smile that Justin sported after meeting Jayne, I sincerely wish that we could meet with each and every person who gave us aid in this very dour time in our life.  I know that we can never truly repay any of you for the kindness that you've shown us, and to attempt to do so would be insulting, but just one smile from that little boy is enough to make it seem like everything is fantastic.

So, thank you Justin, thank you everyone, for supporting us as we hobble our way along to the nearest pit stop.  Everything that you have done for us is not forgotten and is greatly appreciated.  We've had the tireless support of nurses and the doctors at PCH, as well, creating a perfect storm that managed to create a scaffolding around what seemed to be a collapsing bundle of sticks.  I won't forget, ever, the first night that we were in the hospital, officially, that is. When we found out that it was cancer, though that was really the only thing that they were sure of at the time.  I didn't sleep, I spent most of the night just staring at Jayne, the IV sticking out of his arm, the crib with it's innocuous and, simultaneously sinister, bars casting no shadows in the light directly overhead.  I just watched his little chest move up and down with every breath, his arm twitching ever so often as it adjusted to the new weight of the tube jutting from it.  He had no idea what he was about to endure and, truth be told, neither did I.  There was no way that I could make what Shay and I, married less than a year, jibe with reality.  And, as I watched my son, the most important thing I'd ever done in the world, sleep peacefully and soundlessly, I told myself that I would do whatever it took to get us through this.  And we have gotten there.  We got there together, all of us, everyone who has been hanging on every word, trying to find out just what Jayne's status is, what his condition is like, what his future will be.  We all got here, with the end in sight.  It hasn't been the easiest of journeys, nor do I think that it will be the last, but cleared this hurdle with the might of science, medicine, love, and friendship.

Thank you.

And If We're Very Very Lucky, They'll Do It In That Order

The home stretch lies before us. 

Within a month or so, the hardest part will be past.  His MRDs have all come back at 0%, there doesn't seem to be any evidence of leukemia left in his body.  This last round of chemo will ensure that that remains to be true.  Then his, when his numbers recover, his broviac will come out and we'll be free from the hospital.  After that our small Wood clan will be able to, finally, move on with their lives in something resembling normality.

This round of chemo, the big bad knockout punch for any cancer cells still lurking in his body, will last 6 days.  That's surprising for us, considering we thought it was going to be lasting 14 days.  Whether by a misunderstanding on our part or the fact that there is no traceable evidence of any cancer in his marrow, this truncation is quite welcome indeed.  This doesn't mean that Jayne will be right as rain in less time.  Because of the nature of the last three chemo treatments he will be receiving it is very likely that this round may take quite a while for him to recover.  We're expecting, on the outside, to be here for 40 days.  That still gets us out of the hospital well before August begins, meaning that our son won't even have to worry about spending his first birthday with tubes sticking out of his chest.  

For more than half his life, up to this point, he has been in and out of the hospital, enduring treatments and tests in an effort to ensure that he will not have to do this when he's 5 or 8 or 16 or 21.  Jayne's never been in a pool, though now we've been living 50 yards from one for the last few months.  He hasn't had a real bath with real, boisterous splashing that turns the bathroom into a water park.  He's had to spend most of his time learning to crawl, and then walk, with a tall, slender and imposing chaperon, one that keeps him on short leash and is quite inescapable.  As you can already see, we have been compiling a list of things to do when we get out of here.

But even if he won't be confined to the hospital or tethered to an IV stand, there are still limitations that bind us ever slightly.  For one, we will still have to be wary of taking him into public places, especially where there may or may not be kids en masse.  Jayne won't be able to continue receiving his immunization for another six months, at least, and he will be a little behind kids his age for a couple years.  This is especially frustrating, especially given the fact that there has been two cases of measles in Phoenix this past week.  For that period of time, Jayne's immune system will still be in recovery as his bone marrow gets back in the swing of generating the proper white cells.  And he still wants to put everything in his mouth, the closer it was found to the floor, the better.  

Even with these drawbacks, the excitement at our release is becoming more palpable with  each passing day.  We'll both be back to work, looking for a place to live that can accommodate a baby on the verge of walking between two Greek cities and a dog that hasn't seen any of us since February, when we unceremoniously abandoned him at my parents house.  We will get the opportunity to go see friends and family, instead of herding them into a tight, antiseptic room and cautioning them about washing their hands.  In short, we will have our lives back.  And while Jayne's potential for relapse will never quite fade from our minds, not for another two decades at least, I don't think that either of us will let that faze us in the slightest.  We have one of the greatest children's hospitals in the country at our back, along with our family, friends, and everyone else who has helped us and supported us from the first day that we found out Jayne was sick.  We contributed to and participated in a few different research groups in the hopes that, maybe someday, a diagnosis of cancer in a child will be treatable as any other mundane disease.  

With the love those around us and the firm support of medicine and science, Shay and I are more than prepared to step back into our lives, frayed at the edges and tattered in a corner, maybe, but ready to rebuild.  This terrible surprise has made our family stronger and our love for each other, and our son, has thrived.  There seems to be little that we can't accomplish now without effort and cooperation.  We've been through the wringer and come out the other side and that makes us mighty.

But These Apples Are Healthsome Good

It has been two weeks since we began his third course of chemotherapy and we're still waiting for his ANC to drop to zero.  Part of the delay, most likely, is the fact that both his platelets and hemoglobin dipped below acceptable levels and he had to get both levels replenished by way of back to back transfusions on Sunday, first of platelets and then whole blood.  Until his neutrophil count  does finally hit zero we're stuck in a sort of limbo, especially after the precipitously adverse reaction he had this go around.  On one end, we have the troubled digestive system, along with all of the other normal side effects of killing a portion of one's own hostile cells, and on the other, the complications inherent on finding oneself without an effective immune system but still with the desires and ambitions of someone whose lifelong dream is to put every single thing into their mouth before the age of one.  The vomiting and nausea that he experienced for most of last week turned into a variety of other stomach issues culminating in a sudden, yet inevitable, betrayal during a diaper change at four in the morning.  But that too has subsided and now the three of us wait patiently, anticipating that each morning we awake will be the morning that the dry erase closet will finally have a zero where there has been a four or thirteen.

In the meantime, young Master Wood has been determinedly impressing every nurse who has come in to take care of him and his slightly manic parents.  He is now learning how to use a walker and has very nearly learned how to stand up unaided.  The only thing really holding him back from successfully strutting around the hospital room like a plucked banty rooster is that, somewhere between his conception and birth, he was mistakenly outfitted with water skis instead of normal sized feet.  I'm sure that I'm to blame for that, somehow.  I knew that he would probably have big feet like mine, I just thought they were going to manifest themselves a little later in his life, like when he was 16 or so.  Even with such an obstacle as resembling, podiatrically at least, a cryptozoological creature from the northwestern United States, he has been making great strides towards taking his first real steps.  Part of his inspiration to do this is that crawling around on the hard hospital floor is quite uncomfortable, evident by the bruises on his knees and shins.  And while you find the most interesting things with your nose only inches from the floor (yes, even in a pristine hospital room), everyone knows that the really interesting things are really above the foot and a half threshold above the ground.

It has been interesting, and quite delightful at that, to watch Jayne develop and grow while under the constraints placed upon him while the leukemia is being forcefully evicted from his blood stream.  There were fears from many different parties that his development would be lacking, even stalled, while in the hospital.  Jayne is full of surprises, however, and it doesn't matter what life seems to throw his way, he just keeps moving forward with a smile on his face.  It's a small glimpse at the boy he is going to be soon: tenacious, willful, and infectiously happy.  It will be interesting to see how these qualities develop as he grows up.  What will he take away from this experience when he's ten?  18?  I'm not suggesting that he will remember the struggles and tribulations that he endured while he had the broviac sticking out of his chest.  But he will certainly get to hear about this entire endeavor, from many different sources, not to mention the fact that he will constantly be faced with the very real possibility that, at any moment, he could have to go through this all over again.  With the results of his tests and aspirates since the first round of chemo ended, there is no reason to suspect that the leukemia will every crop up again in Jayne's blood but cancer is anything but predictable.  He is going to be walking a tightrope across the chasm of his youth with a candle potentially lit, at one end or the other, underneath the cord that is guiding him from childhood to that mythical state of adulthood.

Looking at it from my perspective, I'm not worried about the way that he's going handle the situation, not even when he has a better grasp of the situation.  There's nothing that can really be done about it more than what is already being undertaken.  The medicine, the doctor's, the nurses, they are all taking it upon themselves to help Jayne's body beat this thing and so it wouldn't do to worry about that.  Nothing that either of us can possibly think about doing will help one way or another, not on a cellular level.  But our function is not to cure the cancer.  Our job is to be parents to our son, to teach him, to instill in him values, to show him how to think, and to foster his growth and development.  Similarly, his job, his conscious job, will be to play, to learn, to think, to question the universe, to figure which Star Wars movie is his favorite and why it's Empire Strikes back.  In short, his job for the duration of these hospital visits, from now until he is 21, is to be a boy.  I don't want him worried about his bone marrow aspiration results when he's five, I want him to figure out how to decide which color Pavel's spots should be in his magnum opus, which will be placed upon the fridge.  Being a survivor of cancer is always going to be a part of Jayne's life but it won't be who he his as a person.  It is a defining moment in all three of our lives but it is not the definition of him, nor our family.

In time, we will have a better idea of how this is going to affect his life.  Maybe in a few years science will develop a better way to discern if there is even a trace amount of leukemia still within Jayne's body and we won't have to have repeated tests each year.  One can hope but it isn't really necessary to assuage my thoughts on the matter.  The only outlook to have is a positive one.  Science and medicine have the cancer covered, not much more we can do, one way or t'other about that.  So, instead of using it as a focal point, I've accepted it and realized that it will run its course, one way or another, I can't really control that.  In the meantime, I will take hold of the opportunities that I do have control over, chief of which is being a good father and husband.  I would much rather concern myself over these things.

And so I bid you adieu.  I thank you all for the support that you have given my family, be it directly financial or merely moral support.  In my view, they are both worthy forms of assistance in times such as these.  It has been a long road and the end is nowhere in sight.  I do appreciate every single bit of it, even if I sometimes find myself quirking an eyebrow at its delivery.  I consider each and every one of you to be dear to me, despite the fact that I most likely haven't met more than thirty percent of you.  Anyone who takes a little bit of time out of their life, a little bit of money out of their wallet, or sheds a single tear for my son makes you worthy of it.  He really is a wonderful little boy and he means the world to me.

Thank you, very much.