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.