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.

Whose Color Is He Flying?

Little more than two days out from his last chemo injection and Jayne is having the worst time so far.  Since day five or so of his injections, his stomach has really been a prime issue.  It won't let him sleep for too long without a myriad of anti-nausea drugs coursing through his tiny veins and he's begun to vomit a bit more frequently than our meager wardrobe can afford.  If he hasn't eaten at all, what comes up is a bright yellow viscous liquid that resembles something that Nickelodeon once dumped on peoples heads.  If he has, he gives us a full account of what exactly it was that had been unfortunate enough to be floating in his system.  Needless to say, the little guy is quite miserable and our hospital floor has started to resemble a movie theater floor, much to the consternation of the cleaning ladies.

Thankfully he's such a unique little baby that this hardly phases him for too long.  He's more upset at the subsequent cleaning required than the brief imitation of Linda Blair he had just attempted moments before. True, he does have his moments, with his roiling stomach at war with his immense desire to just lay his head down on one of our chests and go to sleep. The only thing we can do is bear with him and try whatever we can to make him comfortable and happy.

This is, after all, nearing the home stretch.  His body has performed admirably up to this point and, with a slight change to the dose of one of the harsher chemo treatments, it's understandable that he would finally start acting less like a terminator and more like Kyle Reese.  It doesn't stop him from being a bad ass in everyone's eyes but a not so gentle reminder that he is only a tiny human being enduring an extremely rigorous medical treatment to root out and even more sinister malady.  It's easy to forget that Jayne, the growing little boy who's bringing leukemia to it's knees, is just that: a little boy.  A little boy going through something very large and scary and unsettling.

His ANC has been going down steadily, correlating with his rise in nausea and crankiness, and the steady march towards going home before the last, long chemotherapy progresses yet another day.  As much as I look forward to the day when we won't have to caution our son from yanking on the tubes sticking out of his chest, when we won't have to chase him around with the IV stand like some medical attendant out of Beauty and the Beast, I must admit that the idea is a bit hard for me to wrap my brain around.  We've spent, seemingly, a very long time going through this ordeal that it's almost an insurmountable task ahead of us to adjust back to normal life.  How do you rebuild your life which you helped take apart, piece by piece, and then move a third of it, a quarter of it, 200 miles away and erect only a fraction of that which you took with you?  I've no doubt that it can be done, it's been done by so many families so many times that my concern seems laughable.  Just one more thing to add onto the ever growing Jenga tower that has become my small corner of the Wood family.  The only real comfort is that, though it may sway every know and then, I don't think for a second that it will topple and scatter to the winds.  But the most difficult aspect is not building the tower up and up, but putting the blocks back where they belong.

Well My Days Of Not Taking You Seriously Are Certainly Coming To A Middle

Well, it's certainly been a while but today, at around 2 in the morning, was Jayne's last chemo treatment for his third round of chemotherapy.  It was preceded by some rather intense vomiting and some general crankiness before we finally gave in and ordered him some benadryl.  After being properly dosed up, he was more than willing to lay down and let his mom feed him.  He even managed to sleep through most of the night.  And so now, with three of the four treatments completed, we wait for his ridiculously high
ANC (over 2000!) to drop down to zero before it makes the arduous journey back up to acceptable levels. This should take no longer than it did with the last treatment, so we anticipate being out of the hospital for our short, and final, reprieve around the 24th of this month.  After that will come the last and most intense course that Jayne will have had to go through.  14 days of chemo to blast the remaining cancer cells, if there are any, out of his system, time to allow his ANC to come up, a bone marrow aspiration as a final check to see if he is, in fact, cancer free, and then his broviac tube will come out.  Even by a conservative estimate, that means we will be able to escape from Phoenix by the middle of July.

It's hard to believe just how long these past few months have stretched out, both because of our confinement to our antiseptic holding cell and because of the leaps and bounds that Jayne's development has taken.  He has taken to crawling like a fish to flopping on the deck of a boat.  It's no longer an ordeal for him to pull himself up and scoot along the wall, the couch, the bed to get at whatever we have missed in keep something else out of his reach.  He's becoming much more vocal, singing along with Frozen or constantly making raspberries at the nurses or his parents.  He's fairly confident in his ability to convey "bye bye".  Not that he actually says it, not on purpose at least, but he has gotten the wave down.

Oh, and his first tooth is coming in.

It's sometimes unfathomable just how much has happened to our little guy in this short amount of time.  He looks like a little boy, not just an infant.  His personality is starting to shine through and he's starting to have very real reaction to his mother and I.  Our little baby, who this time last year was nothing more than a black and white picture on our fridge, is turning into a wee lad.  And he's done all of this while kicking the crap out of leukemia.  Most kids his age don't have to worry about grabbing the cords inserted into his veins and ripping them out.  Most kids don't have to worry about being tethered like some inmate breaking rocks. Despite these limitations, which are merely the tip of the iceberg, he has been a bright ray of sunshine, winning over the hearts of every single person who he has come into contact and being an inspiration to every single one of us.  If this baby can get through such adversity with a smile on his face, surely we can muster the same determination within ourselves to overcome whatever comes our way.

My son is, in my eyes, Superman.  While the radiation of the yellow sun, like the medicine and science doing most of the legwork in his fight with cancer, did make Superman super human, it did not make him a superhero.  Even if he isn't stepping into the ring with each and ever cancer cell and knocking them out one by one, he still has the heart of a fighter, of a hero.  His fight is with the things that surround him, not that microscopic civil war within his blood stream.  All of the tests, all of the poking, all of the medicine, the strangers, the unfamiliar places, the uncomfortable machines, the tubes, and the utter lack of ability to fully understand what is happening to him and why are all things that would have left most people stooped and trodden upon, feeling lost and depressed.  But he has taken everything in stride, putting one hand in front of knee at a time, and just smiling when another thing pops up.  He's an extraordinary little guy and he always will be.

So, thank you all, once again, for supporting my Kal El.  It isn't easy for anyone to watch a baby go through what he's been through and we are very grateful for everything that everyone has done to help the three of us get through this and, more importantly, land on our feet when the hospital makes us hand in our decoder rings.  It's always nice to know that wherever we look, we have people supporting us in whatever way they can, whether they are family and friends or the doctors and nurses working tirelessly to get Jayne back up to a hundred percent.

Planet's Coming Up A Mite Fast

The past few days have been quite eventful indeed.  Not only has wee baby Jayne been crawling around the entire hospital room roaring like a dinosaur and smashing cookies into his play mat, but he's also had three dressing changes in five days, two of which were "emergency", he pulled out his IV tubes (not the actual broviacs, so it wasn't as bad as it sounds) twice yesterday, even managing to get the aforementioned cooked jammed into one, and has been generally terrorizing his mother at night when he should be sleeping.  On the positive side, his ANC has been climbing rather quickly over these hectic days, culminating in the news we got today that he hit 260 this morning.  This was rather exciting since the last time we were discharged from the hospital, we had been given the pity vote to let him leave when he topped 200, since we had been in the room for so long, waiting for his ANC to recover.  This time around was fairly long as well, if the tick marks on the wall and the chained skeleton in the corner are any indication, but getting out six days earlier than before is still a marked improvement.

And now, as we begin to go through the logistics of packing our base camp up and moving out for a while, we come to the halfway point of his chemotherapy.  It seems such an indeterminable amount of time that he has been battling cancer that it is almost incredible to think that there is a halfway point.  Yet, here we are, staring down the mad junk yard dog which has wreaked havoc in families past that is childhood cancer and, it would seem, that Jayne is actually making that dog cow and roll over for him.  Now, we aren't halfway through this entire experience, not by a long shot, seeing as how we'll be coming to clinics until he is getting ready for first grade, if not longer than that, but it nice to think that we won't have to be tethered to the IV stand, to the hospital, to this accursed desert village for very much longer.

When be started this whole ordeal in the beginning of February, the road ahead looked so impossibly daunting, so terribly devastating, so thoroughly apocalyptic that neither of us was quite sure what to make of it.  We had no idea what to expect from the process or from the hospital.  We didn't know what this would do to Jayne's development, to our marriage, or to our lives from then on.  It was a giant black hole which sucked up any sort of foresight and presented such long, yet unfathomably, odds that even Vegas wouldn't touch us with a ten foot Mafia-run pole.  We've come beyond the event horizon of Jayne's journey through cancer treatment and now we sit on the edge of an entirely new dimension, one where our son has cancer but he is slowly, but surely, beating it back.  He's crawling around, developing his social skills, roaring like a dinosaur, trying out the different flavors of raspberry there are to be explored.

That isn't to say that none of us has come out unscathed by this whole experience, what with me having to work a bit more, leaving Shay here to tend to the small monster that they switched for our son in the hospital where he was born, but we're working through it.  It isn't something that we could have anticipated when Shay and I first found out that we were going to have a baby, it wasn't spelled out on our wedding cake that we would have to watch our son simultaneously weaken and forge himself through the fires of leukemia.  Now that we are here, I don't think that either of us would have balked at the opportunity because our little family is pretty much the best thing we have going for us and that will continue to be the case as it grows up and out, ever so slightly.  One of the coolest things, I always said, was that I could marry my best friend and then, as a result, create another best friend out of that.  I wouldn't trade anything at all for what I have now, cancer and all, because that's just how life goes sometimes.  We didn't have any control over the way that our DNA was spliced within the fertilized zygote that, 9 months later, gave this little ball of awesome to Shay and I.  Really, the only control we have is in our reaction to this entire situation and how we choose to view it.

Along the way, and quite likely throughout the entire process, there has been quite a bit of outpouring of support for the three of us.  Our loved ones, our friends, our distant acquaintances, and complete strangers have shown us just how giving people can be when presented with the opportunity.  There has been an incredible amount of work put into supporting us while we support Jayne in his fight, from baked goods to organizing fundraisers for us.  Every little bit has been greatly appreciated.  We've also received a fantastic amount of support from the hospital itself.  The PCT's, the nurses, the doctors, even the cleaning staff have lent as much support as they could to help us through this.  Some of them did this in very personal ways, those of whom had day to day contact with our little unit.  The nurses and techs have all been helpful and loving in every way they can.  After all, it's hard to meet Jayne and not instantly fall in love with him.  The doctors have been tireless in their treatment of the leukemia and everything else that has popped up, from the sporadic fevers to the potential contamination of his line (yet again, he rolled around in his poop; I didn't think he had had that much contact with our dog before going to the hospital).  PCH has been instrumental in Jayne's recovery.  Their research, methods, and precautions are the reason that he is doing so well and I'm very grateful to every single person in this building for what they've done for my son and what they will continue to do for future sons and daughters of all ages who come through their doors.

He Was Non-Specific As To How

So, while not everything has righted itself with Jayne's inevitable recovery, there is a bit of light amidst the hazy gray of a hospital in Phoenix.

When Shay and I were ultimately convinced to start up a gofundme, neither of us was entirely sure that we were comfortable with people giving us money, as it were.  Sure, we knew that were going to be in the hole after everything was said and done.  Sure, we knew that trying to live day to day on hopes, wishes, and faith would be quite laughable.  But, still, we were never comfortable with taking money from other people so that we could continue to get by while our baby fights off cancer.  Eventually, we gave in and started one with the minimal goal of 5 thousand, a goal that we figured we would never see the fulfillment of for the duration of our stay.  We admitted that there might be a chance of overly generous people finding it within their hearts to contribute to our personal disaster.

I never expected the fulfillment of that number to come and, surely, I never suspected that it would happen in the manner in which it did.

As most of you know, there is a certain fighter who is taking a step back and playing Mickey to our Jayne.  Sure, he has spent most of his career fighting for himself, honing his craft and making a name for himself.  But when the chips are down, when Jayne needed to run up the steps of the Philadelphia Museum of Art, Justin was there to play Eye of the Tiger, guitar and vocals all the way.  I don't want to denigrate the efforts that most of you, all of you, have put forth for my little guy, but Justin Gaethje took it to another level.

You've read about the donations he gave to the auction in Pima and those he inspired in the World Series of Fighting.  It put a different spotlight on our tiny cancer champion than just that.  Most of our audience was family and friends.  Our cheerleader squad was composed of aunts and uncles, grandparents and cousins.  Today, however, he went above and beyond.  He met our five thousand dollar goal.  He didn't send us a message, he didn't comment it anywhere that I could find, and he didn't try to self-promote as he did it.  But he gave to my son purely for his sake.  Maybe he won't say something about it, but I will venture into that territory.  Everyone else reading this, stop, right now.  The longer you read, the redder his cheeks are going to get (yes, I mean the badass fighter).

Thank you, Justin.  You never had a reason to take an interest in my son's struggle other than the fact that your mother, a woman I can heartily identify with because we both love our son very much, mentioned it to you (as far as I know).  Despite no prior contact with this little ball of handsome personality, you decided to give it your all towards our family.  You managed to attract the attention of your own organization and journalists who wouldn't have given a second though about another baby with leukemia.  It isn't cruel because it is reality, there are too many babies, developmentally and in the eyes of their parents, afflicted with this terrible disease.

If your generosity, Justin, can bring the spotlight on this smallest of generations, whether they have cancer, developmental diseases, or even just born without a silver spoon, I say to you "Cheers mate."  You have done a great service to my family.  To Jayne.  To me.  You sir, are a wonderful human being, as most of us are but rarely have the balls to actually exhibit.  When Jayne is declared cancer free, I would like for you and him to meet.  So that he could have the honor of meeting one of the many fighters in his corner and that you
might have the pleasure of meeting the boy they call Jayne.

You All Gonna Be Here When I Wake Up?

A few days ago I said that the slow and trudging journey to a functioning immune system had finally begun with Jayne's being fully depleted after this round of chemotherapy had finished.  Well today the struggle toward a healthy happy baby has, yet again, truly started to take shape.

When a body is put through the rigors of chemotherapy, it's like a forest undergoing proscribed burns.  Sure, there is a specific target in mind when the first fires are lit with the water trolleys encircled and at the ready but you can't tell the fire to target a specific number of trees or to favor pines vs junipers.  You can only unleash it and attempt to contain it until it has successfully done what you set out to do.  Chemo drugs target cells which tend to replicate rapidly because cancer, as you may have guessed, is a collection of cells which replicate rapidly.  Unfortunately it is indiscriminate in its chemical barrage hence the reason cancer patients undergoing chemotherapy also lose their hair and ability to heal easily along with the part of their body which is actively trying to get a disease named after them.  There isn't really much anyone can do about that at this juncture.  Maybe after a few more decades of intense research, clinical trials, testing, and testing again will a better form of treatment arise.

Jayne spiked a bit of a fever today.  He most likely isn't sick, just like the last time he spiked a fever.  His body is in the very demanding process of rebuilding those cells which it has lost.  He is, in other words, healing.  But this will cause him, over the next few days, to run a fever, experience a bit of nausea, and generally feel pretty crappy.  As they say, you've got to break a few eggs to make an omelette.  Of course, they never mention the cow that you have to milk for the cheese, the pig you have to kill for the bacon, nor the horse whose dung you will have to filch to grow the mushrooms.  And, not to nitpick on colloquialisms, but they also never even bring a bowl into the equation.  So really, it should just say, "You've got to break a few eggs to make a mess."  Which, on the face of it, isn't entirely without merit, especially in our given situation.

Jayne, as one can imagine, is not happy with this situation.  He's transformed from the cheery, happy, squawking baby that he usually is to a loud, grumpy bald fellow with a chip on his shoulder and a severe desire for your life to be all about him.  Rupert Murdoch, he is slowly becoming Rupert Murdoch.  Thankfully, this window into what other peoples' lives are like when munchkins invade their happy marriage/life will only be open long enough for the pies to cool and then it's on to our just desserts.  We can't do much to help him, other than guess which part of his body is hurting him more, what is keeping him awake, and generally try and address his need for snuggling.  The last part is not very difficult, which you might understand, if you've ever held the wee lad.

 All we have left to us is really the same thing that we have had throughout this entire predicament: trust.

We brought him to one of the most capable facilities that we could ever find with some of the most experienced, competent, and caring personnel we could ask for.  Biology and medical science have come a long way due to the diligence of people like the ones we deal with on a daily basis and others we would have no reason to be in contact with.  The amount of research that has gone into effectively treating cancer, and all of the side effects of that treatments, truly shows when you look at the rates of survival over the past few decades.  The years of peoples' lives that have gone into saving this one baby, among millions and millions of others diagnosed with cancer, is really something to give you pause.  These people, the people who devote themselves tirelessly to, essentially, keeping families whole and saving lives, are heroes.  They've earned my respect because Jayne will get to grow up to be a (fairly) normal child, doing things that he, otherwise, has no right to do.  Sure, he's miserable now but, let's face it, in a few years he will be a teenager and then he'll always be miserable.  At least now he's actually doing something, kicking cancer's ass and stealing nurse's hearts.

Now for something completely different.

As most of you are aware, if you aren't trapped in a time vortex disguised as a children's hospital, it is April.  Time sure does fly when it's strapped to a bird.  Not only is tax season but it is rapidly approaching what we in the know like to call Jayne's Day.  If you're not entirely sure when or what this is, come, follow me and let me show you.  Or tell you, at least; I could never draw very well and one stick figure looks pretty much like another.  Jayne's Day, as it has been dubbed, is on June 11th for no other reason than mere happenstance.  This is the date for the Super Hero Mayhem in Pima, brought to us by the fantastic Cherla Ramsey, and the concert to benefit Jayne and Skye in Show Low, largely coordinated by Kristen Denbow and facilitated a bit by my very good friend, Burt Bradford.  I have very little details on these two events, one of them has an event page on Facebook (Mayhem), the other is being hammered out furiously, akin to those plastic gophers infesting boardwalks and arcades everywhere.  If you are in either of these areas and would like to help or attend either, feel free to get in touch with either of them and offer your time, your ideas, your heckling and cajoling, if you're so inclined.  I will try to keep you up to date as soon as I am.

Also, last time we were out of the hospital, we were visited by Anthony and Bryna McCormack, who are renowned and celebrated for their culinary and hospitality acumen.  They told Shay and I, after much cuddling and exclaiming over our handsome boy, that they had been talking to their rep with Shamrock Foods and that they would like to donate foodstuffs to our little family unit.  This, as can be expected, floored the two of us with its unsolicited generosity.  It just goes to show how amazingly selfless and charitable people can be without promise of recompense, in any form.  I would like to thank the above named for their tireless support for the three of us, along with all of you.  Yes, you.  Even you, in the back there.  You guys have made is bearable living with this disease, watching our little guy suffer through something so terrible even adults balk at the idea of it.  I realize that everyone has their own way of looking at things, including said moral support.  While I may not agree with everyone's perceived method, I do appreciate each and every one of you for the simple reason that I love my son very much.  He's probably the greatest thing I have every contributed to this world and it warms my heart, cold as it is, when I think on just how many people have come to fall in love with this small boy with the big brown eyes and charming, toothless smile.

One day I will tell him of all the heroes that came to his aid, who watched him in, what should have been, his darkest hour grow and despite it, live and laugh.  These heroes who didn't give up on him because he gave them strength by being strong himself.  These heroes who were just people showing support for a baby with leukemia because, deep down, regardless of belief, color, or creed, people love to love.  No matter whether they want to admit it to themselves or not.  And, hopefully, he will love that.

This Place Gives Me An Uncomfortableness

Today is the day that we were waiting for.  Jayne finished his chemo four days ago and since then it has been quite the tedious wait for his ANC to drop to zero.  Only after that can it start to recover, finally releasing him from his bounds.  Now that it is, in fact, fully depleted, we can expect to be out of the hospital in a short time.  Well, relatively short, like how a baseball game compares to speed chess.  Along with his neutrophils, his platelets and hemoglobin has also dipped significantly.  He will most likely need to get to some more platelets either today or tomorrow, possibly a blood transfusion in the next few days.  A larger issue has come in to sharp focus with his anemia, one that keeps Shay and I acting uncharacteristically helicopterish with He Who Shall Be Cured.

As most of you might now, Jayne is a standing fiend.  He is becoming quite adept at all manners of mobility save walking, running, wheelchairs, driving a car, flying a plane, and whatever it is that middle-aged women do on the streets of every town in America.  His crawling has improved greatly just over the last few days and he is now starting to sidle along the side of his crib, furiously tasting each few inches, savoring each delectable flavor he finds.  It's the sidling that has given us cause for concern, however.  As part of his leukemia, he is anemic, hence the reason that he needs transfusions so often.  Because of this fact he is very capable of causing internal bleeding within his skull.  A capability he has taken to with much gusto, relishing in watching us squirm, as he grips the top of his crib and proceeds to see just how close he can get his head to whacking it.  He did that very thing yesterday, though not as hard as he could have, and now has a decent bruise on his forehead.  

This squeamishness to watching Jayne act accordingly for his age range is quite difficult for the two of us to experience.  He's a baby learning to crawl and develop his leg muscles, he should be hoovering the floor as he scoots across it.  He should have a chance to figure out not practice for the World Cup with his crib rail.  He wants to put new and interesting things in his mouth?  Sure, that's how he learns about the world and develops an immune system.  But we can't let him be a kid and he can't possibly understand why we keep taking things away from him, confining him to very small areas that we know to be clean, and, even then, we are quick to swoop in and snatch him up.  He is in a quantum state, Schrodinger's Cancer Kid, at once both very strong and quite vulnerable.  It's not a line that is expected to be easy except hypochondriacs or unconscious perpetrators of Munchausen by proxy.  

It's one of the many clear instances that illustrate just how different the next few years will be for the three of us than what was initially expected when we were expecting.  Despite that, however, we are determined to not let it stop be a child as much as he can.  We can't let him really play with too many other children until we are able to get him updated on his vaccinations, which won't happen until he's about a year out from when he's cleared.  But there's plenty more that he can expect to do that we will do our damnedest to facilitate.  Walking with reckless abandon, eating dirt (very occasionally), learning to ride a bike, playing with his dog outside (if we ever get a real dog).  These, and so much more, are all bridges we will have to cross together but the reality that we both have come to accept is that he is not a porcelain doll, despite how pale he is.  We're beating cancer know and so we can deal with anything else that arises on his path to becoming a fully fleshed out human being.  This time in his life will not define him, though he may use it once or twice to get laid. 

No Power In The 'Verse Can Stop Me

Most people love to share, be it their cookies, life stories, their opinion of Facebook, just about anything that can be passed on from one to another.  Jayne is one of those people.  He can't share in the usual ways because his food is breast milk (nobody else really wants that), he lacks distinguishable language skills, though he does know how to communicate, and we won't let him have cookies because of Cookie Monster's tragic overdose a few years back.  But he loves to share his smiles and laughs with everyone and anyone, as long as he has been given time to size you up.  It's hard to not be affected by him when he is in a good mood (which is most of the time, all things considered).  However, his other form of charity to the people around him revolves around the one thing that all of humanity share: bodily functions.  That was precisely the method which Jayne used to wake us up this morning, peeing on mom.  It started as a rivulet but soon became a torrent of "Oh god what is that?  Why? Why?".

So that was fun.

In the past couple of days we have been visited and contacted by some very good people who were interested in spreading Jayne's story and our ongoing struggle with leukemia.  We had a photographer come in yesterday morning to capture the awesome little ball of cuteness that is my son.  He posed and smiled, even did a few things on that we had been hoping to get a picture of, like his stinkbug routine.  The name of the organization is Flashes of Hope and their goal is to photograph every single child with cancer to spread awareness of these brave individuals and the unfathomable circumstance that they and their families have been thrust into with only one option: to fight their way out as best as they can.  They not only capture just how heartbreaking it is for a child to have cancer but how, incredibly, there are twinkles of immense cheer, optimism, and strength within them.  Sometimes it is hard to see those sparks when they are hidden behind IV stands, a wheelchair, a head covering, and trapped within the confines of the walls which scream, "Sick person here!".  And so, Flashes of Hope strives to bring those dazzling lights within each child to the forefront and show the rest of the world  that cancer is not the end and that there is still something that can be done, not just for the kids currently diagnosed, but for the millions who have yet to be diagnosed, the ones who aren't even born yet.  It isn't just a fight for the now, but a fight for the future, one that I have really take upon myself to further in anyway I can.  

One of the ways that I try to accomplish this is through exposure.  No, not being dropped in Alaska naked and dipped in bear bate.  Every picture of Jayne that we put up, every charity that grabs a hold of his story and runs with it (sometimes quite literally), every person who has wanted to do something for my family, every article written about the subject, helps spread the good word.  Those words are, "We can beat this", though sometimes those words become the background of this very blog.  On Thursday night, I was put into contact with a man by the name of Rodolfo Roman, a writer for Fox News Latino.  In Florida.  He had heard about Justin Gaethje donating his gloves for the auction down in Safford and how the World Series of Fighting not only did a story on it for their website but then went a step further and donated things of their own in an effort to bring in some more financial support for the three of us.  Mr. Roman wanted to write an article on Jayne and how Justin helped him out in his time of need.  So we talked for half an hour or so about Jayne, about the leukemia, about the situation that my wife and I were suddenly thrust into, and my desire to use this experience as a spearhead to do whatever I could to help every family who has to go through this or will go through this.  

Lastly, we got a message on Facebook from one of our friends in the Mountains concerning a wristband sale for Jayne's benefit.  They are fairly simple: orange (the color of leukemia-fighters everywhere, making them very bad at being ninjas but safe when they are riding bikes at night) and saying simply, "The Boy They Call Jayne".  It's a good name, we should give a medal to whomever came up with it...  Anyway, it's five dollars per band and there are two sizes, youth and adult.  My sources tell me that youth fits adult, so I think it should be more akin to adult and Hulk but that's just me.  They should be here in a week or so, I don't think there is a group or event page on everyone's favorite stalking medium, but the post was shared by Shay, Cherla, and myself.  

I would, again, like to thank everyone who has thrown their hat into our ring.  Not just financially but morally as well.  It has been very helpful to us to know that we have so many people rooting for Jayne and willing to help out however they can, even if that is just sharing this blog with others around them or telling them about the auction or marking Jayne's Day on your calendar (it's June 11, in case you forgot, more to come on that).  Sometimes the best thing that you can do is just to be there and we are quite lucky that our friends and family are as amazing as they have been.  Thank you all, I consider each and every one of you to be my friend.  Your support of this tiny lad fighting for his future and, in some aspects his very life, makes you mighty.  

That's Why I Don't Kiss 'Em On The Mouth

Jayne is back to doing his best Andy Dufresne act.  Armed only with his spoon called tenacity, he's more than ready to go back to climbing through the sewer pipe that is chemotherapy.  Morgan Freeman, surprisingly, will not be making an appearance, but he is going to read the audio book.  He is one chip in the concrete closer to busting out of this joint. 

When we got out of the clinic and into the hospital proper, we found that our new room might have actually appeared in an episode of "Orange is the New Black".  It was actually a transplant room, so every occupant would be wheelchair bound.  The bathroom was the size of some apartments I've been in.  But due to the gargantuan nature of the lavatory, there was very little room for much more, like a couch.  So, faced with the very real possibility of living in the hospital sleeping on the floor in our own blanket nests where we would keep the bits and bobbles we found along the way, our nurse decided that registration had made... an error.  While Jayne started his first round of chemo (thankfully it started well before the "Now we'll never get any sleep" threshold), the staff got another room, one appropriately furnished, ready for us.  In the time it took me to lug everything up from the van and Jayne to finish his injections and flushes, we were in our new room.  That's when we remembered that the floor was actually softer than the couch but by that time, we didn't want to be "those people" and let it be.

The little guy charmed his nurses and techs, as usual, and there was a bit of a furor over the return of the boy they call Jayne to the seventh floor.  We got several care packages, one from Child Life which included a new bouncer, a DVD player, a few new toys, and a very soft pirate blanket.  The other gift we got was from Child's Play which, if you aren't familiar with it, is a children's charity run and supported by gamers of all shapes and sizes.  Even though he was a bit young for it, the toddler game pad was a very cool gift, something I'm sure he will enjoy when we have to come back in the coming years for his unending follow-ups.

We also got a chance to talk to the AML doctor yesterday, focusing mainly on how he was progressing and what we could look forward to for this round.  One of the topics that came up, though, centered around the "after", that mythical period in time where Jayne will be, hopefully, cancer free and back on track to making our lives miserable joyous.  After chemo number four, we will have to come back to the clinic in Phoenix once a month for the first year.  If he's still reading clear then, it will slow down to once every three months, then six months, then, finally, once a year.  We can't really say just how long we are going to have to keep coming back, there is always a possibility that, like diarrhea, it could strike when we least suspect it.  I think that's the most difficult concept with cancer that people have coming to terms with.  It isn't like getting a disease or a virus; cancer is not an invading force, it is an insurgent effort, with the leukemia thinking it has cell's rights despite the fact that is, in fact, part of a larger organism that ultimately sets the guidelines and makes everything work together.  That doesn't mean that he will be permanently sequestered to hospital rooms for the rest of his young life.  If everything goes well, he won't have to see the inside of another hospital room until the day his first born arrives (which isn't even a certainty there).  There isn't much more that we can do in that regard other than just being his parents and raising him as best we can to be a decent person who won't use the fact that he had cancer as a baby to guilt others into doing what he wants.  

I cannot guarantee the last.

 

Huh. I'm Starting To Like This Plan

For most people, receiving a call from the hospital is rarely a good thing.  It's usually to tell you that that growth you were concerned about is malignant.  Or thousands of spider eggs under your skin.  If it isn't somewhat unfortunate news, it is horrifying and may require you to go through years and years of therapy before you can order calamari every again.  That isn't entirely fair, though, because sometimes it's good news.  Which is what it was today.

As most of you know, we were at the hospital on Wednesday getting another lumbar puncture and bone marrow aspiration to determine what his MRD was, which would then dictate the course his treatment would take.  Turns out, we caught a bit of a break.  His leukemia blasts were at two percent, which was well below the threshold of five percent.  So, because there was minimal residual disease, he will not be needing a bone marrow transplant after all of his chemotherapy and his next two treatments will be slightly protracted followed by one last, hard-hitting round to wipe out even the smallest amount of leukemia lurking within his body.  Everything up to this point has always gone to the least favorable route for the lad and he's taken it in stride, battled through it, and come out victorious.  At least he won't have to go through the rigors of getting a transplant and possibly getting regular check up to make sure that the cancer hasn't flared up again, dooming we three to another stint in the big little person's house.

On top of that good news, I'm sure that most of the people who read this blog, saw, in some form or another, that Jayne was recently featured in an article for the World Series of Fighting.  It was written to highlight the generosity that Justin Gaethje, who grew up in Safford and is currently the lightweight champion of the WSoF, showed my family.  He donated the gloves from his recent victory and inspired the Word Series of Fighting to also donate a few things to be offered at the raffle, put on by Gila Valley CrossFit.  We haven't gotten word on how it went, but the fact that these people donated anything to help my son battle cancer is enough.  I will try to keep everyone up to date on the outcome and if there are any other ways in which they can contribute, should they feel the need.

As I've said over and over, thank you to everyone who has given something to help us out.  It hasn't been easy and it certainly looks to only be getting more and more difficult.  Every little bit is appreciated and I hope that this experience can put into perspective just how heart-wrenchingly challenging this is for every single parent and child who is going through or will go through circumstances such as our.  As much as I appreciate people giving for the sake of my son's well-being, I would love it even more if Jayne inspires each and every one of you to think beyond this one infant, to the world of childhood cancer, a dreary, depressing world that is somehow pierced through with rays of sunshine in the form of a child's smile.  Children who have no reason whatsoever to be smiling manage to be happy and optimistic because they are surrounded by people cheering them onward and doing everything they can to help them in their fight.  Whether it's a small donation of a dollar, the effort it takes to get charity events up and running, people using their position or relative fame to help those in need, or just being a strong and caring parent when the time to step up arises.  This is a fight for us all to take up because children with cancer, who have to live their lives out in hospitals and clinics, should have the opportunity, even for an hour at a time, to be a kid and to have hope.  Jayne gets that hour thanks, in large part to all of you, hopefully, someday, another two or a dozen or even a hundred kids can get that hour because of his struggle right now.

I Got Stabbed, You Know, Right Here

Very few people enjoy visiting medical facilities.  There are insurance forms to fill out, administrative hoops to jump through, unending tests, pointy needs, bakers, and candlestick makers.  Well, only if they're sick; it wouldn't do to have healthy artisans wandering around, plying their trade, in a place of medicine.  Having spent a month in a hospital, I can understand some of the anxieties surrounding such places.  

Today was our first clinic visit.  Jayne needed to get a lumbar puncture, a bone marrow aspiration, a few blood draws, and a thorough tour of an exam room.  I feel like the latter is required for any visit to a clinic.  You can't truly be cured of what ails you until you have intimate knowledge of the ten by ten the doctor/nurse/medical professional is going to be, eventually, evaluating and treating you in.  I digress. 

After we spent a few minutes in the oncology and blood diseases waiting room, we took his vitals, got a blood draw, and were shown to our exam room.  Jayne took some time ripping up the paper cover on the exam bed, which was quite important, and playing with his dad by taking turns doing raspberries.  He was a happy little guy.  About then, we got word that his ANC was 1150, a good sign that his body was recovering well from the chemo, and that, pending the results of his aspiration, we would most likely be re-admitted into the hospital next Wednesday.

After touched base with our AML doctor, we moved over the hospital proper to get his two draws.  Jayne, of course, impressed all the nurses with his push ups and planks, not to mention a few smiles here and there.  It's hard to imagine anyone not falling in love with my little guy at first sight.  He's just so damned happy, always very calm, and he never has much to complain about, even given his trying circumstance.  That being said, the anesthesiologist did manage to scare the crap out of him, inadvertently, so it was a good thing Shay and I were there when he was being put under.

Most of the details following that aren't really noteworthy, but the results of the tests themselves will prove to be.  The aspiration that he got is what is going to determine, in the long and short run, when we are going back into the hospital and whether or not he will need a bone marrow transplant.  The point of the aspiration, the extraction of his bone marrow, is to calculate the percentage of cancer bursts still present after the first round of chemotherapy.  The tricky bit is that, at a glance, cancer bursts very closely resemble new growth bursts.  So, as one can imagine, it can be a bit tricky figuring out just how effecting the chemo was, especially when Jayne's wee body is recouping this well.  So, while a number below the threshold will definitely flag him as low risk for a flair up later on, a number above the threshold could actually just be a false positive for him being high risk.  

Low risk, 3 more sessions of chemo and then home free, quite literally.

High risk, 3 more sessions of chemo and then a bone marrow transplant.  

If the numbers are tight, we will have to do another aspiration next Wednesday and so we won't be admitted back into the hospital until the next week.  As much as I would like to say that Shay and I would love another week of being able to meander around in our underwear, not having to tango with IV stands, and generally live as close to a normal life as possible right now, we both agree that the preferable outcome is that we get back in and get all of this over with in as little amount of time as is realistic.  Right now, it seems like such a cruel, unending sentence of treatment, pain, discomfort, and prodding.  To put things in perspective, though, our neighbor in recovery was a young man with bone cancer who had to have his pelvis, femur, and knee replaced with prosthesis.  He'd been in and out of the hospital for years and his body was still fighting itself.  It's hard watching my son go through such terrible circumstances, to be ill, to be miserable, to be poked and prodded seemingly without end.  But he's lucky, he's still growing at a normal pace, still developing his personality and physical abilities on par with any other child.  I cannot imagine being a parent and having to watch your child go through something as drastic as major prosthesis, radiation sickness, years within a hospital, and that's just naming a few of the hardships that the other occupants of the oncology/hematology endure.  

We're lucky that science has progressed in the past 25 years that we can say, with very little doubt, that, sure he has leukemia, but he'll be fine.  I don't have any naive notions about a penultimate cure for "cancer" but I can appreciate just how diligent the people in this field are in ensuring that every man, woman, and child with any form of cancer have a fighting chance, not just to recover, not just to leave the antiseptic confines of their hospital room, but to, once again, be normal.  To feel normal.  So, thank you, each and every one of you whose day to day goal is the treatment and research of cancer, in whatever form it may take.  You saved my son's life, along with millions of other sons, daughters, fathers, mothers, brothers, sisters, friends, and complete strangers.  You guys rock, around the clock.