We're All Doomed! Who's Flying This Thing? Oh, Right, That Would Be Me.

First off, sorry for the hiatus.  Due to a few circumstances, not the least of which was a cold, leaving me quarantined from the hospital room, I haven't been keeping everyone up to date.  I myself was not entirely up to date.  Thankfully, during my absence, Shay's mom was able to keep her (sane) company and help out with Jayne.  I believe there is some sort of powerball-esque machine whirling away to decide who the next family member is to sleep on the prison cot made to look like a hospital couch.  Tickets will be sold in the lobby.

In the past week, he finished his last chemo treatment, ending a ten day streak of injections, antibiotics, constant vital checks, and nipple shields.  I feel like the last is reference to types of mammary armaments, along with breast plates, booby traps, and areola reconnaissance.  With all of that over and done with, the real task of healing began.  We had to wait for his ANC, which is a count of his neutrophils, to drop to zero before we could really expect any movement in a positive direction i.e. a somewhat functioning immune system.  When it did, he was fully exposed and the effects of his therapy started to bombard him rather mercilessly.  His hair has begun to fall out, his eyes are chapped, he has been getting a fairly intense diaper rash, his stomach is sensitive at times and, as a result, his sleep is sporadic and fitful.

A few days ago, his fever spiked to around 101, causing the doctors to fear that he might have an infection.  This precipitated a battery of antibiotics, a culture of his broviac tube, one failed albeit hilarious-if-it-weren't-so-heart-wrenching attempt to place a catheter, one successful placement of a catheter with a voided bladder, and several concerns of outside sources infection.  As it turned out, rather happily, these steps were proven unnecessary.  No infection, just Jayne's body healing itself of its wounds.  Today will be the last day he needs antibiotics because, for the last 36 hours or so, he hasn't presented a fever.

Not all that happened during this intrepid reporter's absence was dire, though.  He's sitting up by himself with a fairly trustworthy track record of stability.  He's done more crunches in the past few days than I'm sure the rest of us have (excluding Aunt Cherla).  This is opening up a much broader world of playing for him as he can now have a better vantage when he wants to throw his toys on the ground, his version of fetch.  Jayne is also taking his first tentative motions on his way to crawling.  So far he has only achieved retrograde locomotion.  He goes backwards but with style, hence the spruced up jargon.  This can be a bit aggravating for him since most of his toys are, in fact, in front of him and he has only ever succeeded in widening the gap between him and them.  Still, it's an indication that this young man will soon be mobile, however limited by his IV stand, in a short time.

And now for something completely different.

Jayne's ANC is 26!  That's fantastic news, as long as it continues to increase.  There is no guarantee that his levels won't sporadically fluctuate and there is till the long haul before his mother and I.  His body needs to get that number to 250 but any increase is good news.  We'll have a better idea of just how well he is bouncing back in the subsequent days as we see how gradual or random his numbers increase or decrease.  Now it's the waiting game.  Which really isn't much different from the game we've been playing all along, now it's just waiting, with style.

We Will Rule This Land and We Will Call It... "This Land"

We're on day nine.  After that we need to wait until his ANC (Absolute Neutrophil Count) has dropped to zero and then rises to 250k.  This seemingly arbitrary number indicates a fairly decent idea of what his immune system is like.  Neutrophils are white cells, the base unit for ones immunity to bacteria and disease.  Jayne, as of this morning, is around 21k, so we're looking at around another two weeks in the hospital, as his ANC rises and falls at a whim.

This is the hard part.

We have to wait, with very little going on, allowing his body to leave itself entirely vulnerable and then rebuild, slowly, so that we can spend a few days outside this clean room, and end up back within these cold rooms.  It isn't easy, watching your son's body break down as the attacking cancer dies, but you wouldn't recognize the struggle just by watching him.  In nine days, he might as well just be participating in sleep research, which he is dazzling the white coats with little effort.

The difficulty is really laid at our feet.  Watching this weakening, experiencing the bone crunching seclusion, hearing prayers but seeing lackadaisical reactions.  It isn't easy, being sedentary as your baby fights for it's life.  That has been the hardest bit to come to terms with.  How do you support someone who has no idea what exactly is happening?  How do you comfort one whose pain is indefinable and inexplicable?

As carefully as you can, I think.  He is fighting, kicking cancer's ass, and we are doing everything we can to assist him in that.  Me.  Shay.  You, the person to your electronic right, the person to your digital left.  We are all gathered because of this young man and the fact that we are invested in his future, in the reality of that future.

There will be a few events in Jayne's name, not least of which is a concert.  Kristen Denbow and Jesse Valencia are key in helping to figure the logistics out.  Rylan Sturm is helping to write Jayne's theme song, a take on the "Hero of Canton", from the show Jayne's name is derived, Firefly.  This is one of a few opportunities we are trying to provide for the community, communities, to come together and help Jayne in tangible ways.  As more information becomes available, I will let you know.  Rest assured that even after Jayne is cancer free, years and years from now, I want the boy they call Jayne to help other children diagnosed with cancer.  To help their parents with the reality biology has placed in front of them.  That is my endgame, after the wee lad

I'll Chip In

Today was rather uneventful.  He had his chemo injection.  He took a nap.  He pooped.  He took a... no, wait, I'm going to cry for 2 hours straight.  So, he was a joy.  And I loved every second of it.  We watched Lion King while mom and his aunt took a much need walk around the block and go their nails done.  Unexpectedly, however, was the revelation of just how awesome people can be.

Mary June, Shay's mother, initiated a cinnamon roll drive, where she sold a pan of 9 rolls twelve dollars.  They were apparently delicious.  I didn't get an airdrop of Safford confections but I have delighted in them before: well worth the asking price.  And most people in that area thought so as well.  I can't confirm numbers, but I'm fairly certain it was a bun load.  With that many pans sold, one could imagine that the Jayne fund jumped up a few hundred dollars and you would be right.

The best part is that, while the pastries were undoubtedly delicious, they didn't buy these buns for the blood sugar.  They wanted to show support for our son.  They wanted to let us know that, no matter the hardships of sporadic genetics, there are decent people out there willing to be good people just for the sake of it.  I may never get to meet each and everyone, shake their hands, and tell them, from one humanist to the other, "Thank you for what you've done.  You're proof that humanity is not lost to Ayn Rand tendencies."  That being the case, I say it now:  Thank you.  Thank you very much, for showing us the support that only our fellow humans can give.

Oh, and what was the final number?  1812.  James Madison held off the British and Dolley held back a few White House masterpieces to give us a hand.  The best part: the number of pans sold doesn't jibe, mathematically, with the final tally.  I am, once again, blown away by just how amazing people being people can be.

Pain Is Scary

We successfully got through his last night of multiple injections with nary an issue.  He slept peacefully again with the lack of his nap earlier that day and the dose of Benadryl working well on his disposition.  With the new day came a new nurse and pct ready and willing to become enamored in our debonair, nearly bald lad.  Also, today marks the day that he was to get his broviac dressing changed for the first time.  As you might well guess, there was a feeling of trepidation at this from the nursing staff; most children don't react well to their first or even their fifth changing of the gauze.  So, with a promise of flashing noise makers and an extra pair of hands, we set out on a bold new task.

We surrounded his bed, donned our masks, and, as the nurses began to work at dissolving the adhesives holding his dressing in place, I held his feet and he held onto my finger.  To distract him, as most children need, Shay was holding several colorful noise makers, filled with colorful balls and shiny beads, and one ray blaster.  With the cacophony of light and sound making coherent thought a distant memory, they begun peeling away the dressing.  It seemed like a bad acid trip shared by Jackson Pollock and Andy Worhol.  Indeed, if Jayne ever does mushrooms in his life, or any other hallucinogenic drug, I'm sure that the buried memory of this experience will rear it's multicolored head and vomit forth the demonic pitter patter of a rain stick mating with a space laser.  I already anticipate a phone call at two in the morning 18 to 20 years from now regarding this very eventuality. 

With the assault on two of our five senses complete, it was time for a third, our noses, to feel a bit of persecution.  And, with a nose as sizable as my own, this was no small ordeal.  When the dressing was off and discarded, the area around the tube and incision into Jayne's chest needed to be clean.  I'm not sure what the substance was but I'm fairly convinced it was created in a small shack up in the mountains and delivered by an older man driving a stock car.  For those of you who don't know the origins of NASCAR, this is reference to the fact that this cleaning solution brought to my mind very vivid, and yet muddy, memories of my first encounter with moonshine.

Despite all this, he was a rock star, paying very little heed to noise makers and glowing lights except for the cursory glances of a baby trying to take in all of his surroundings for later cataloging. He didn't flinch in pain, he didn't scream or cry or show any hint of fear.  He watched us all in turn, held onto my finger, and treated it like another day at the office.  Sadly, it will become an event he is all too familiar with, as this process needs to be repeated every week.  Again, the nurses were impressed by the boy they call Jayne, commenting that it was the best reaction they'd seen a child have.  I'm sure some of the was positive reinforcement for Shay and I, not to mention a bit of a stroke on our egos (we are both responsible for producing precisely one half of him).  I don't hold that against them; with a tyke who needs very little consoling and coddling (except when his aunt is around, then all he get's is mollycoddling), I imagine the nurses feel a bit unfilled in their jobs and so must find someone to reassure.

We've crested the first ridge and the straightaway is in sight.  We don't know how long we'll be in this cramped room but not long enough for them to have required the walls to be padded.  Best guess is that we'll be able to take him out of the hospital in ten days or so, but it's really contingent upon Jayne's biology and genetics.  Thankfully, we saw that he was well-suited for the task, as his genes are impeccable.

Thank you, everyone, one and all: our families and friends, who are constant in their support, the nurses who fawn over our baby, the techs whose due diligence keeps us comfortable and informed, and the doctors who are doing everything they can to ensure that Jayne does one day call me at two a.m. after reliving this experience.  We love you all for loving our sweet boy. 

We're Still Flying

Today marks the halfway point in Jayne's first treatment.  This is the last night that he will have to endure 4 injections one after another, with nurses and pct's coming in every twenty minutes to change his IV, check his vitals, and administer prophylactics.  This is his hump day, once he wakes up tomorrow morning, he'll be that much closer to finishing this first go around.  Not that all is sunshine and roses for the wee tyke.

His platelets dipped further last night so he will be getting a plasma transfusion in the afternoon.  His hemoglobin is holding steady, meaning that his blood is carrying plenty of oxygen to and carbon dioxide fro.  That also means that he won't need a whole blood transfusion, for now.  They've taken him off the allopurinol, indicating that the uric acid the leukemia has been producing  has begun to slow down, decreasing the likelihood that he will have kidney stones develop.  Ever the optimist, I'm taking that as a sign that the chemo is, in fact, doing its job efficiently.

On that same note, however, it is getting more difficult to put him down for his nap and to get him to eat at what used to be his normal times.  Part of that, surely, is the screwed up schedule the hospital stay has put us all on.  Most it, though, can be owned by the chemotherapy.  The benadryl and zofran help his nausea which, in turn, helps him sleep better.  Better but not without the occasional bumps in his somnolence.  Surprisingly he is sleeping more through the night since we started his benadryl, going so far as to even cooperate with the nurses when they check his blood pressure.  Usually this process takes three or four goes before an accurate reading can be acquired.  Nighttime Jayne, however, requires only one pass before giving up acceptable numbers.  He still sleeps through his eye drops, for the most part, and is generally well rested in the morning when we all wake up.

One of his favorite things to do is to sit.  While he is ever so close to holding himself up sans support, he still prefers the comfort of sitting in one of the few chairs we have for him.  To his great delight we managed to bring one of his chairs to the hospital which has allowed him new vantages and even more angles at which to throw his toys about like an insolent chimp.  He enjoys being able to watch the activity, or lack there of, in the room with the same field of vision that most of us take for granted.  He doesn't have to twist his neck 180 degrees or be content with what is just over my shoulder as I pat him on the back.

One last adventure to describe ere this comes to a much deserved close.  Part of the protocol with having an IV, especially under the circumstances of chemotherapy, is that the line has to be changed every seven days.  This is for a myriad of sanitation reasons and to ensure that the integrity of the line isn't compromised from overuse.  A standard part of this, for chemo patients, is that while the line is being changed, everyone in the room, patient included, needs to wear a mask, just to err on the safe side.  And so, in parting, I give you these gems:

Thank you to everyone who has contributed, in some manner, to rectifying Jayne's ongoing predicament.  Our family owes you all a great debt of gratitude.

I Don't Mean To Alarm Anybody, But I Think We're Being Followed

A week ago I started this meager transcription of what had, and was going to, happen while Jayne is fighting cancer.  What I thought was going to be an interpretation of events to keep our family updated has somehow transformed into a portal between Jayne, Shay, and I and the rest of the world.  Maybe that's a bit hyperbolic, despite that fact that, yes, anyone at any place in the world could be reading this.  Still, my sweet boy has managed to capture the hearts and minds of a great many people.  The readership isn't solely comprised of people that we know and, in fact, I'm fairly certain that there are more people who have heard of this young man's struggle through the grapevine rather than firsthand knowledge of who Shay and I are.  Needless to say, I'm appropriately blown away.  Not only because a portion of the people who have invested time out of their days to catch up on Jayne's present condition have also contributed, in some manner, financially to his plight.  While we are both very grateful for their contribution, I think that just the fact that people are interested in his progress and scratching the days into the wall along with us is amazing.

It is because of this outstanding show of compassion that I feel a bit apologetic toward Jayne's fan base.  Not for my droll writing or, at times, irreverent humor.  Nor for my flippancy and frank manner.  No, it is for something that I consider to be much more important, something larger than writing styles: the small things.

Bear with me.

The sign of good writing is capturing the nuances, the idiosyncrasies of life and those who are caught up living it.  It's about finding the minute details and drawing grand pictures which can transform shape and familiarity within each individual imagination.  That is what I would love to be able to do as you, vicariously through me, watch Jayne fight and grow and change over the course of the next half year.  I can tell you about his medicinal regimens, his struggles with the nipple shield, and his inability to be monogamous.  When the moment arrives, I can tell you about the first time he rolls over, the first crawling he starts to do, maybe even the first tentative step he takes, with some assistance from his dear ole' da'.  These are all big(ish) moments for a kid his age much like, when he's a bit older, the first time he holds a lightsaber.  It's easy to paint a picture for you, the reader, describing such events because the only equipment required is a football helmet and primary colors.  Not that these moments don't contain their own beauty and tenderness.

Life, however, is a chain of interlocking links, so fine that you might miss their individuality in lieu of observing the thread as a whole.

I can't describe to you the new way that he's beginning to look at the world, where he needs to see everyone at different angles.  He'll look at you and then cock his head and lean forward.  He wants to take in what he sees in as many ways as possible.  He also knows that this looks fairly ridiculous and, as a byproducts, it will make whoever he performs this act of observation for will smile, if not laugh.  He's becoming an entertainer despite the Lifetime tragedy he has become engulfed in.  He wants to make people laugh at the world which he sees as full of laughter.  (As I type this, he is having an extreme meltdown due to a combination of exhaustion, hunger, monitoring his chemo, and the administration of medicine.  No metaphor is perfectly airtight).

That is just one of the many things that will change and grow with this kid as he goes through the ringer.  Maybe he'll start to eat solid food and discover what he likes to eat and what he likes to throw.  We may have the opportunity to watch as the nature of taste and smell evolves for him and lights up his face as a brave new world opens up to him.  Instead of flinging toys and flailing wildly, perhaps he'll begin to actually play with his toys, the gears in his head working away as he imagines a land whose breadth and scope we couldn't possibly fathom.

I know that he'll make friends; he has already.  He may never remember them after a year has passed but the social development he will acquire will undoubtedly stick with him until his formative years as a young adult.  At that time, any hint of civilized social discourse will be out the window followed by what is sure to be a smart ass streak.  He is, after all, my son.

In light of the daunting task I have set before myself, I hope that I can do justice to the day to day that the three of us are going through.  Because the main issue, on the face of it, may be Jayne's struggle with cancer, but the reality is the deeper and oblique manner in which the three of us cope with it.  Part of that reality is also how you deal process it.  I hope that reading about Jayne's brush with heart wrenching illness will give you a surge of vitality and give you the means, even if for the ten minutes reading this, to have a heart wrenching brush with life.

That's What Makes Us Special

Today is the first Valentine's Day that Shay and I have been married.  I got her a small, stuffed bear and a small box of chocolates.  She gave me Jayne, so I see it as even.  The bear was being sold in the cafeteria and I spotted it when I was getting us dinner.  There won't be any flowers, no gift cards to the spa, and, sadly, I won't be making dinner tonight.  Mostly likely we'll have some variation of what we've had for the past week.  We'll spend the day hoping that Jayne can sleep more than 20 minutes at a time.  That he can eat more than he did yesterday and keep it down.  That today, maybe, he'll take his medicine a little bit better and without redder than a firetruck.  These have become the concerns in our life.  Not that we'll get to spend every holiday between the antiseptic walls of a hospital.  It doesn't even seem to bother us that we'll have the chance to vacation on our first anniversary all the way to the luxurious play room, where other stricken children congregate to wash away the tedium of being bed-ridden, wheelchair bound, or tied to a dire maypole.

I'm confident that this will be the only time that we spend such a day as today in lock down, watching our son fight for his life while we idly wait and see.  Even so, it is an important day for that very reason.  This course which life has so judiciously chosen for us will stay with us for the rest of our lives.  I hope that I can always remember just how my worry, discontent, and unwillingness to give up on my family looked reflected in a heart-rate monitor.  People always want to tell you that adversity and burdens of the soul (or at least the neurological equivalent to what the poets reference ad infinitum), and mayhap that is an accurate representation of what happens to a person who has been through the proverbial fire and come out the other side very much scathed and scarred.  I don't feel that it covers the extent of what a person becomes in such circumstances.

Speaking to my very limited knowledge of such things, it's very much akin to being hollowed out, with choice bits reserved and others discarded.  It's true that you can gain much in the face of heart-wrenching turmoil but there are always things that you can never regain.  Once you help hold your child down while a nurse inserts and IV line into his arm, you don't quite hear his laugh the same way.  When you first get the news that, yes, your son has cancer, you can't help but feel your heart pause as you consider just how fragile this young man is and always will be in your eyes.  It isn't a matter of thinking positive, because I know that Jayne will come out the other side of this with nothing worse than a few scars and a medical bill longer than most beginning-level college papers (so it's measured in words, rather than pages, to intimidate the wide-eyed freshman, who thinks that Moby Dick must be around 1500 words long).  But perception is a fickle mistress and once it's tainted, even slightly, it's hard to shake that tincture.

Jayne is very special to us all, his smile and personality has touched a great many people in very positive ways.  Professional medical staff have offered, if not threatened, to take him off our hands if we ever leave him unattended without his munchkin lo-jack.  As he grows up, the bud that is his mind will blossom into something, someone, truly worth beholding.

But I can almost guarantee that, for years and years to come, I will lay awake at night, Jayne asleep in his room snuggling with his Wicket teddy bear (wink wink, hint hint, say no more), and several words, in large block letters, colorful and sinister, will float across my mind's eye: remission, sickness, altered, vulnerable.  And through all that, through sheer force of will on my part, I will force my mind to replace such dire lamentations with one, simple thing: we made it through.

You're Coming Through Good and Loud

It's just Jayne and I hanging out, right now.  I spent the last half hour holding him and reading Lord of the Rings to him.  I had promised myself that it would be the first book I read to him when he got a bit older.  There's no time like the present, so they say.  Of course, they have been known to say a lot of superfluous things, so I don't put much stock in anonymous theys with too much time on their hands, saying whatever comes into their brain at any given moment.  After about fifteen minutes of reading and snuggling, he fell asleep.  He just missed his eye drops and antibiotic, but he's been sleeping so irregularly that we all agreed that that took priority.  We've had a slew of doctors in and out, meeting him, introducing themselves to us.  Every one of them who walks away remarks just how adorable he is.

Along with his sleep, his appetite has become just as irregular.  It's unique, now, for him to feed for longer than ten minutes and that ten minutes is interrupted by coy smiles, occasional biting, and grabbing the shield and flinging it away.  As was to be expected, the chemo is starting to rear it's ugly visage.  We've been using anti-nausea and a saline drip to try and counteract what's been presenting itself so for, but we think we may need to try a bit more to truly mask the effects of his injections.  If this persists, we'll probably start to give him a Benadryl injection every six hours, offset from his current anti-nausea.  If it comes to that, it may help him sleep as well as eat more, both key components to a healthy, albeit fighting an aggressive cancer of the blood, baby.

And still, he's just tearing through it as best he can.  He has his moments and I don't delude myself with visions of my son maintaining the same, cheerful temperament for the next months of sustained treatment and recovery.  But, today, he's laughing and playing, so that's something.  Even if tomorrow comes and finds him with an upset stomach, patches of hair missing, and a pain that no one can really understand or assuage, my son will still, always, be just that.  Everything he's going through, Shay and I feel it in a way.  It twists our stomachs into knots, sends our minds adrift in a sea of doubt and uncertainty, and causes our hearts to break, ever so slightly, every time he cries, spits up, or has to go through some other form of discomfort to restore his body to it's original hale state.

He thanks you for joining him on this journey.  At least I'm fairly certain that that is what two spit bubbles follow by a raspberry mean.  I thank you as well, I thank you for helping Shay and I maintain our sanity, what there was to begin with.

Hey! Free Soup

The three of us finally made it to the weekend and with that sudden arrival comes yet another aspect of Jayne's predicament.  As I've said before, he's slogging through this like a champ.  Sure he's a little bit crankier when we have to wake him up every few hours in the night to give him oral medicines, check his vitals, and weigh him, but I think you would be too.  This morning he started a new anti-fungal, which he will be taking on the weekends.  This, along with the antibiotic he's been taking, will help keep him as healthy as possible while his white cell count dwindles.

The idea with the extensive pink prophylactics reinforcing his immune system is that he can remain as much of his handsome, happy self for the next six or so months.  Right now, as I type, he is wearing an Irish bib which says "Kiss me for luck", making noises at me, and chewing on his fingers, his favorite chew toys above all else.  He's getting sleepy; it's just about time for his mid morning nap, so he's got plenty to tell us before he actually goes down for a few hours.  He hasn't changed much from two weeks ago, before this whole fiasco came to light.

He's still a curious little guy, watching everyone who enters the room, trying to figure out what they are.  He's picked up on when they come in with medicine for him or, least desirable of all, a mouth swab to clean out his mouth.  He still wants to help the nurses with his vitals, grabbing the stethoscope and following along with it,  relaxing slightly so that they can take his blood pressure, talking them through the process every step of the way.  He even slept through his eye drops being administered this morning.  The kid is a rock star, and he's staying strong, fighting the cancer one day at a time, and he's doing it for all of us.  And with all of us.

Yeah, Cuz Sick People Are Hi-larious

Jayne had a bath today.  He's helping afterward to pull of the tape protecting his broviac line from getting wet.  

This Must Be What Going Mad Feels Like.

As everyone knows, Jayne started his chemotherapy yesterday.  It didn't really start until much later than anticipated, around 10:30 last night.  That meant that were constant checks on his vitals, an array of oral medicines for him to take, eye drops (which he disliked greatly), and a mouth scrub (which he hated).  This is going to be our norm for the next six months or so.  Late nights, fitful sleep, administrations of medicine upon medicine, all the ensure that, eventually, our baby boy will come out the other end with a clean bill of health and the love and admiration of the entire seventh floor of PCH.

There is one aspect to the treatment that, while discussed briefly, didn't really hit home until he had actually begun receiving his injections.  His system is coursing with drugs that attack rapidly reproducing cells, cancer cells being the foremost among these, and as he continues on this path, every aspect of him will be fighting the cancer at full force.  This great news, despite the toll it is eventually going to take on our champ, but it also has a very devastating side effect: Jayne is a volatile substance.  As Shay is feeding him, she needs to wear a plastic shield so that his saliva won't get onto her skin, particularly her nipple, and seep the chemo drugs into her system, which would in turn make her begin to feel sick.  When we change his diaper, we need to use gloves.  Even his urine is to be treated with care.  No longer can he jam our fingers in his mouth at will.  As anyone who has ever had an infant to take care of knows, nearly every aspect of taking care of one includes, eventually, some form of bodily fluid being transferred to the adult.  It's a law of nature.  And so we are forced to cut off some, if not all, of the bond that we currently share with our son.

It's alien, in a way.

Because his urine, saliva, and poop could be potentially damaging to one of us, we need to have a layer between our son and ourselves.  Granted, this is not an extreme such as an iron lung or, if you grew up in the 20th century, a giant bubble, but there is still that limitation of contact between son and mother and father.  That may be the most difficult tribulation to endure.  I can accept that he's going to get visibly more affected by the chemo and that he will lose his energy (but never his smile) for the duration.  But being forced to treat your child almost as a rod from a nuclear reactor is a bit different, a bit more difficult.

I suppose the only way to look at it, to get beyond it, is to realize that, yes, we may be restricted in our contact with Jayne for the next six months; but we will be able to see so much more of his life and be involved in it (until he's a teenager, at least) in far greater ways than changing his diaper.  I know I sound a bit like a broken record (y'all remember what those are, right?) but in the end, he will be fine.  And, due to this treatment, he will our healthy little boy again and he will have the chance to live a long and prosperous life.  So it's just a matter of strength and will.

Thank you, one and all, for everything you do.

Looks Like We Got Some Imminent Violence.

As all of you may know, today is the day that Jayne will (eventually) begin his chemotherapy.  Despite the impression I gave earlier, it didn't start in the morning.  It likely won't start until six this evening.  That is a mixed bag for my wife and me.  On one hand, sure, we want to expel the cancer quickly and as soon as humanly possible.  On the other, we don't want to start with what is surely to be Jayne's descent into weakness and vulnerability.  Regardless, it is a delay, and to some, any sort of delay is difficult to endure, even if it's just an extra five minutes waiting for your table at Chili's.  But, after some thought on the subject, I've come to the reality that I can't possibly fill this particular blog with comments akin to a forty-something who has no idea just exactly what table rotation is.  The truth of it is much grimmer and much more nuanced.

As some, or all, of you know Jayne is currently receiving treatment at the Phoenix Children's Hospital.  So far, every member of the staff we've come in to contact has been fantastic.  They all fall in love with Jayne, almost instantly, and they do everything they can to make us, and him, comfortable for the duration.  It's just about everything a parent could ask for.  But when things like this happen, the delays, the wait, the lack of surety, it can dig at some people, especially within this society.  To them I say:

"Calm down."

It strikes me that we need to examine where we are a bit more.  Sure, Phoenix, so everyone working here is a bad driver almost instantaneously.  Then there is Hospital, meaning that there is a building filled with doctors, nurses, techs, and administrators whose day to day goal is the health of their patients.
The word that should stick the most in your throat is the middle word: Children's.

We are sitting on the seventh of eleven floors of sick children.

And their parents.

Maybe not every one has cancer, a serious infection, or even jungle fever.  But the fact remains, there are hundreds upon hundreds of kids in this hospital, fighting something.  And beside each and everyone is a scared parent, grandmother, aunt, sister, or even just friend.  We cannot ignore the implications of Jayne being in a children's hospital.  Every person who has to sit in a waiting room, who has to hold an unconscious hand, who has to watch IV's be inserted, blood drawn, and nurses lead these tiny people into room where they will be photographed, scanned, poked, and cut into is, for the most part, sitting in fear.  "What if" becomes their favorite, if not exactly by choice, game.  Scenarios flash in their mind, pictures waft across their consciousness, doctors and nurses bandy large, scientific words that they have no hope of understanding; it's a nightmare to each of these people except when they look down, they are still wearing pants.

I know I've been ranting and railing on people to do something for Jayne by donating your time, your money, or even just sharing something on facebook, but I'd like to amend that: Don't just do it for my son, much as I'd like you to.  Do whatever you will, in whatever capacity, for the parents in waiting rooms right now.  For the brothers and sisters who can't see their immune-compromised sibling, for the grandparents, for the uncles and aunts.  For the nurses and doctors, who have to watch each and every tiny will fight of such an immense foe, be it cancer, failing organs, or congenital diseases.  I fight for Jayne with everything I have, but I fight for each and ever kid here; the bald kids, the chair-bound kids, the kids on dialysis, the kids who need a donor, the kids with an unknown infection, and each kid whose parent is lost in the dark since their shining light has been dimmed by illness.

To you, Jayne is them, to someone else they are Jayne.  He is the Eggman, they are the Eggman, I am the Walrus.

Today Is The Day

Today is the big day and he's entirely ready for it.  Sleep, after all, is the great equalizer when combating something like leukemia.  You wouldn't know it at around midnight but that's neither here nor there.  I will try and keep every abreast of the situation as it develops (what is this, CNN?) without being to obnoxious.  As his treatment progresses, he will change and not just by losing his hair.  But Jayne will be fine, after the duration; I trust, as should you, in that very deeply.  Thank you everyone, we're in for a hell of a ride.

Any One You Walk Away From, Right?

Today is the last day of comparative normalcy for the next six or so months.  In the morning, Jayne starts his chemotherapy treatments.  It's the first step, a necessary step which will bring us to the eventual closure of this chapter in all of our lives.  Over the next six months, I will watch my son go through some fairly difficult and painful experiences, from nausea, vomiting, loss of appetite, sores around the mouth, flu symptoms, fatigue, the list goes on and on.  It's at this tipping point, before the iceberg has floated to the top of the ocean to display all that has been hidden beneath the veneer of time not yet passed, that I think about what it was like a week ago.  When Jayne was just another baby boy learning how to roll over from his back to his stomach (he wasn't very good at it.  Let's be frank, he was rubbish up to this point).  He was, as so many want to try and reiterate, a very healthy happy baby.

Except that he wasn't.

That seems to be the most difficult struggle of all.  Admitting that a child is sick when you don't have any outward indication of such a malady.  It's the denial and anger phase, I believe, balled into one.  "What, sick?  Not my kid.  How could my kid be sick, look at him!"  Well, appearances aren't everything.  The Titanic sank, the Challenger spacecraft was fundamentally flawed, and the Star War prequels were just awful, awful movies.  It is at this point that every parent, or at least I see it this way, has a choice:  You can deny the claims that your doctor and all of the staff, equipment, experience, education, and technology behind him are telling you about your child or you can look at the facade that genetics has put upon your child, that of a healthy, happy tiny person.  To do the latter is not only delusional, it's detrimental to the entire healing process.  Not healing in the guru burning herbs and listening to Ravi Shankar sense, but the actual, medical act of curing and healing whatever ailments afflict the aforementioned tiny child.  Courage, as they say, is not the absence of fear.  And in that sense, embracing the reality of the situation is the only way to begin helping your child.  That is what I chose to do, I chose to embrace it, I chose to trust in the science and to be strong for my wife and my son.

It's really the only recourse, as I see it.

It was never an option to give in, not for a second.  It was never an option to let despair take me, not even a bit.  I had to be the father that Jayne deserves and so I through my weight behind him and I've been there ever since.  I've been there for both of them in their times of need because while hope that everything will be fine and dandy by merely thinking it is a very attractive idea to many people for many different reasons, I needed to do, even if that doing appeared to be no more than just to be constant in my resolve and to catch others as they fall.

I know that Jayne is sick and I know that it could potentially be very serious.  But I also know that he will make it through this with a couple of scars he can use later in life and a vast wealth of people who took time out of their lives to express their love and support for him.  That will never leave him, even years down the road.  Every single person invested in this venture will remember the time they stood with Jayne Wood as he fought for his life.  This is slowly turning into the St. Crispin's speech, I realize as much, but I do think that it is true and I hold onto that truth, just as much as I hold on to that truth that I will see Jayne ride a bike for the first time, that I'll be able to teach him how properly fabricate a whole chicken in under a minute, that I'll see him be a father one day and that because of measures I took and measures he inspired others to take, maybe calamities such as these will be a thing unheard of when he holds little Max Jr for the first time.

So thank you all, each and everyone of you, for everything you have done for my little guy.  And in the morning or in the afternoon, spare a thought, no more than that really, for the boy they call Jayne, the boy with the goods, and I will call that a win.

I Could Stand To Hear a Bit More

When you fight in a shield wall formation, as the Greek phalanx did, it relies on several factors to remain effective: you must have predetermined a nice flat space where you and your foe can meet, you cannot allow the enemy to flank you, and you cannot let your forces turn and run.  If any one of these conditions is not met, you cannot have an effective shield wall and you will lose that day.  Why are am I bringing up Iron Age battle tactics?  Has there been a radical new treatment for leukemia discovered that recovers several large, sweaty, and overly muscled men in thongs forming a circle around Jayne's bone marrow?  No.  That would be odd and not really appropriate in any hospital, especially a children's hospital.  The staff gets uncomfortable when half naked men wander the halls.

But it does the image does draw some interesting parallels to the struggle which Jayne is going through.  Some are obvious, some aren't but I'll get to those, if I can.  People always phrase it as, "X is battling cancer", "Y is a fighter", "Z can beat this thing" and there is good cause for that.  Jayne's body, his immune system, his chemistry, his genetics; they are all doing their damnedest to battle these invaders, these wolves in sheep clothing that somehow managed to sneak their way in and create a few turncoats who then, exponentially, began eating away at the core of this polis named Jayne.  He has the Golden Band fighting off the Persians threatening the established order within his body.

We've picked our battleground, monotonous and unremarkable as it is.  Phoenix Children's Hospital has been wonderful (for him) to stay in.  Everyone here is doing everything they can for my little guy, from the techs all the way to lead doctors in oncology and hematology.  Everyone has fallen in love with his smile and his attentiveness.  They support Shay and I in any way possible, be it informing us of everything they are doing to help him every step of the way or just getting us water for the seventy-third time.  They fawn over Jayne, they be as gentle as they can when they are taking his vitals, they draw labs, give medicine, and change his saline bag in what can only be described as a loving manner.  This place is an even battleground and we couldn't ask for better.

In conjunction with the above, we have expert pathologists, ultrasound tech, rad techs, and many many more doing everything they can to get ahead of the sickness festering within the confines of Jayne's vascular system.  There are no hillocks where cavalry is waiting for the perfect time to strike, flanking our well arrayed formation and throwing our plans into disarray.  Knowing is half the battle and, thankfully, not only does everyone here have that same mindset but they afford us the opportunity to learn as much as we can about the condition currently afflicting our boy's tiny body.  We're not left in the dark on anything and every one of our questions is answered, thoroughly and satisfactorily, no matter how many times we ask it in different wording.

The last tactic is probably the most difficult to deal with and it really dawned on me today, after Jayne's PET scan had wrapped up.  The theory behind having a deep line of men in a phalanx is very complex, containing several different battle doctrines into one simple concept: have more men than the other guy.  You need deep lines in a phalanx so that you can replace fallen lines of troops rapidly, so that you can create a larger buffer between your missile infantry and their missile infantry, and lastly, and most grizzly of all, so that the force of all those men, shields pressing against backs, feet churning through the mud, can keep the front line in place and moving forward.  When a melee between two phalanxes occurs, it is, boiled down to it's essential and immediate reality, a shoving match between two forces.  This effectively traps the first two or three rows on either side of the fight, forcing them to stand, fight, and move forward.  They have no choice, they have their companions' shields pressing against their backs and their foes spears jabbing at their bodies at every opportunity.  When we finally got to go back and see Jayne, who was waking up from his minimal anesthesia and starting to fuss at the apparent lack of boob waiting for him, he seemed fine, lack of food notwithstanding.  Shay sat him down and tried to feed him.  As is the usually problem with going a long time between feedings and then hearing your baby crying, when the boy pulled his finger out of the dyke, it proved a little overwhelming for the tyke.  Shay stood up and tried to calm him down - and pulled his IV apart at the broviac branch connector.  We called for a nurse, who came to help immediately but by then there was blood flowing from Jayne's tube as we attempted to staunch the flow of both blood and saline.  Through all of this mayhem (it wasn't quite mayhem, but I'm allowed one or two dramatic embellishments.  Wait until the masked Tyrannosaurus Rex appears at the climax of act two) Jayne was perfectly content.  He calmly watched all of the over-sized infants scramble and pick up tubes, clean up some kind of red milk up, and form an unconscious protective circle around him.  On our way up, I was able to carry him, free of his crib and his IV stand, back to our little slice of sterility on the seventh floor.  It was the first time since we got to the ER on Thursday that I had really done that.  It struck me that Jayne was mirroring those young, fresh-faced lads being forced by their compatriots to literally go toe to toe with another group of young, fresh-faced lads whose only way of making it out alive was to hold on for dear life and thrash about with their spear or short sword.  He doesn't have a choice, he's chained down to fight a lion in the Circus Maximus, and he can't leave until he thoroughly trounces it. 

And he's calm.

Sure he has his moments, what four month old doesn't?  But for the most part, he takes everything in stride.  All of the new people coming in and out, now wearing these funny masks making it even more difficult to properly catalog their faces for future consideration.  All of the needles, all of the tests, all of the small, funny smelling rooms.  Everything that would make adults like you and me quake in our boots and set our wildest fears upon us in our dreams, Jayne has accepted and moved beyond it.  I'm not naive enough to suggest that he understands what is going on and what he is about to endure but he is smart enough to recognize the difference these past few days have presented him against the previous months of his life.  He's ready to dig in, slog through the mud, and come out the other side.  And he will because he has the support of this hospital, the support of his parents, his grandparents, uncles, aunts, cousins, friends, nurses, doctors, receptionist, and even random people on the internet that didn't know his face from a Cabbage Patch doll just two days ago.  He has real support behind him, people willing to do whatever it takes to assist his fight, his battle, his duel with leukemia.  

Because of you, your actions, he is able to continue focusing on the only thing that really matters.

So are we.

I'll Be In My Bunk

Last night was Jayne’s first night with his broviac line and with the first dose of chemo coursing through him.  Not only did he sleep through the night with nary a complaint but he and his mother are still sleeping, which is not an easy thing to do on what hospitals pass for stone slabs.  As a the sun begins to shine on just another day, several thing begin to dawn on me.

Yesterday we started a gofundme, and when I say we, I really mean Kristen, who put a lot of work into starting that up and getting it to the point where is was really must a matter of pointing and clicking.  I was, and still am, very appreciative of the effort that she, like dozens of other people, are putting forth for the sake of our wee boy.  More shocking than the offers and acts of kindness is that, on further inspection of the donations towards Jayne, we’re already twenty percent to our goal of $5000.  Shay and I are incredibly lucky to have friends and family with such wonderful hearts and minds.  

Also yesterday was a little rougher than it maybe had to be on the part of the parents of the boy with the knit hat.  Part of our consultation before and after Jayne was to receive his first chemo shot, as a preventitive measure, was that Shay would not be able to breast feed him.  Jayne has never been very good with a bottle, he doesn’t understand why he should have to lower himself by allowing this rubber nipple intrude his personal space, even if it is carrying infant ambrosia within it’s mysterious confines.  He, like most red blooded males, prefers the real deal and, since that’s all we’ve ever really needed to give him, he didn’t eat much from four in the morning until well after he shook of the anesthesia.  Jayne didn’t seem to mind too much, he was higher than Jerry Garcia at Woodstock, but it did take an unforeseen toll on the other half.

There is a certain bond that a mother and child share just after the child is born.  Part of that bond, especially in this case, is breastfeeding.  Between the contact, the closeness, the feeling of safety, and the idea that the mother is providing a conduit to the child for the best possible growth and development possible.  It’s comfort food, for Jayne and for Shay.  It’s bonding time, eye contact time, the very occasional I-bite-your-nipple-and-then-smirk-at-you-playfully time.  That last one was starting to occur a little more often as Jayne’s mischievous nature starts to show through the facade of innocent baby he’s been fooling everyone with.

And it was taken away.

Because, we were told, there was a likely chance that the chemo drugs in his saliva might transfer to Shay thereby making her feel the effects, even if just slightly, she couldn’t participate in this bond which has been angering old restaurant goers for decades.  It was hard, as one can imagine, like being told that you wouldn’t be able to take your child to a baseball game anymore because foul balls might develop a complex society and begin targetting children and their parents.  Understandably, it didn’t go over well.  Jayne was asleep for most of this time but every substantial chunk of consciousness, we would try to give him his bottle.  Which he promptly disdained and offered up scowls to any nearby.  I would guess that between the time he got out of his procedure, 11:30, to about 4:30 he ate less than a half ounce.  It was a little devastating for Shay, told that her most important function as a mother, in her view, was now defunct.  One can imagine what followed.

Thankfully, nurses are badasses.

At around quarter to 5, one of the duty nurses came in to talk to Shay.  She didn’t care what the doctors had told us, she had never heard of any adverse effects from a mother feeding a baby on chemo.  “Not in thirty years,” she intoned.  She wanted to Shay to do exactly what Shay wanted to do: feed her baby boy.  And she promised us that she was going to hunt down our doctor and set him straight.  Come to think of it now, I haven’t seen him in more than twelve hours, so maybe I shouldn’t be putting this into (digital) print.  Since, Jayne has eaten and eaten well, and thus was able to sleep throughout the entire night, luckily for us.  As was his mother, for the most part, without the mental weight of failing at one of the major duties of motherhood.  

When he wakes up, he has a P.E.T scan at 11, a few more blood tests, and whatever else the day might offer up to us.  Until then, he’s pretty content in his bunk.

Let's All Be Bad (But In a Good Way) Guys!

One of the hardest parts of watching a lad such as Jayne struggle through his medical hardships is a feeling of helplessness.  There isn't much more that Shay and I can do to help him other than be strong and try to support him as best as we can.  The doctors, nurses, techs, and his own little, chubby body are going to be doing most of the work.  Those closest, geographically, to us will be able to do little things for us: bring us food that wasn't carefully crafted in a hospital, wash our clothes after the third day of sleeping in them, and help us make the transition of living in Show Low with our happy baby to camping out in a 15 x 25 room seven floors up.

But what about those who aren't able to assist us, and by proxy Jayne, in such overt ways?  A few have offered, at no request from anyone, to get themselves tested and offer up any and all bodily fluids (and in some case parts) to help Jayne's speedy and eventual recovery.  Others, such as Shay's sister, Cherla, Kristen Denbow, Paula Williams, and a much longer list than I would have ever thought conceivable, have offered to spearhead the charity and fundraiser campaign to help pay for Jayne's medical treatment and stay, and to keep Shay and I afloat through this tumultuous tempest.  Some help us in some very direct financial ways.  All of these people, named and unnamed, have our undying gratitude and words can never express just how much the three of us appreciate the vigor and candor with which they offer their kindness and charity.

That still leaves a very large portion of the Jayne David Fan Club with little to do in the way of support or help.  With that in mind, I decided to do a little research and cross-checking of records and I have found a way, for anyone who wants to, to contribute however indirectly and obtusely to help Jayne and children like him.  There are several different foundations and charities whose mission statement include raising awareness and researching treatments for leukemia and other forms of children's cancer.  The one that I found has a wonderful financial record and stellar transparency and accountability, donating around 94% of their total income to research grants, cancer treatment programs, etc.  

Anyone interest in giving to the Pediatric Cancer Research Foundation can click here.  From there you can donate money, give a tribute in honor of Jayne, find ways to volunteer, and a plethora of other ways to contribute to the lives and health of kids like Jayne and parents like us.  Not only will you be helping kids fighting cancer, but it's a bit more akin to doing something than thoughts and prayers.

The First Step

It’s a surreal experience, finding out that your child has cancer.  It can happen when you’ve had them around for years, getting to know them, their quirks, their personalities, their hearts and then, before you know, you can watch that child of yours fade and weaken, like a shadow cast in bright lights.  For me, for us, it happened when my son, Jayne, was four months old.  Our only experience with him was watching him grow, laugh, and find his toes.  Our days were filled with eating, pooping, sleeping and then repeating in no particular order.  We played with him, he played with us, he studied his surrounds, memorized faces of people he met, and liked to lay down and talk to the little sun hanging above his play mat.  

Now he’s lying in a hospital crib with several tubes and lines protruding from his body.  He’s had two surgical procedures so far, two IV lines placed, ten blood draws for lab work, three blood transfusion, two plasma transfusions, and a spinal tap.  He’s spent more time in the hospital at this point than when he was born.  And yet, he’s still our happy little baby.  He makes noises, he flirts with the nurses, he stands and stomps, and stares at everyone in turn.  He’s still our baby boy, even in this strange, surely alien environment.  He’s met more people here than he had previously in four months.  

The hardest part is yet to come.  We were informed that he had leukemia on Friday (2/5/16) and they were able to narrow it down to AML on the following Monday (2/8/16).  His immune system is compromised, so any medical staff who comes in needs to wear a mask.  He’s on a very stringent visitor restriction regimen.  If one of us goes to get lunch, we have to wear a mask, so that we don’t inadvertently bring something back and get him sick.  And he hasn’t even started his chemotherapy yet. In the coming months he will lose his hair, his appetite, and, his vitality, but he will still be our son.  He’s a fighter, he’s proved that already, and as difficult as this will be on him, and on his parents, family, and friends, he’s cunning enough to look the cancer in the face and spit in it’s eye.  Mostly because his only offensive weapon consists of spit, but the gesture will speak volumes.  And lying in our bed, many years from now, we’ll be able to take our little boy in our arms, kiss his cheeks, and tell him the story of the boy they call Jayne.