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.