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.

Mighty Fine Shindig

Jayne has finally learned to roll over from his back to his stomach.  And, more frightening, he has begun to do it while he is asleep in his pack and play.  His days of sleeping high up near the edge are over.  He can't crawl, yet, and he hasn't wholeheartedly tried to pull himself up while in his crib, but you can see it in his eyes.  He can rock back and forth, go from hands and knees to sitting and vice versa.  His Aunt Molly showed up, so he is in prime show-off mode.

Today is also our first wedding anniversary.  

One year ago today, after much prepping, cooking, arranging, organizing, cleaning, dressing, rearranging, and a bit haranguing, Shay and I tied the knot.  It wasn't anything fancy or elaborate, just family, friends, and a judge.  All of Shay's brothers from out of state came, my brother flew from Arkansas to be my best man, we had a cute flower girl (Shay's niece) and a determined ring bearer (Shay's nephew).  It wasn't a gala event, there wasn't even a first dance, but it was a wonderful ceremony with a lovely bride.  The two families joined into one laughed and ate and had a generally good time together, celebrating Shay's name change and my having married my best friend.  We became companions, traveling through time and space, and all we needed was a blue telephone booth.

And six months later, Jayne came barreling into our lives.  It was surreal, as I'm sure it is for every new parent, holding the result of a combination of your genetics mixed with another.  It does give you a perspective on life that you never considered before, at least for most of us.  Here, in my hands, I held the continuation of myself.  Long after I was burned up in a row boat on a lake somewhere, in traditional Viking style, this tiny boy would be able to pass along my unique combination of star stuff, personality, and imparted values to new generations, maybe even going as far as impacting the world on a large scale.  

None of that really changed with his illness.  I'm fully invested in his recovery and not without reason.  One of the most encouraging thing that we have been a party to is the amount of people who have been very selfless for Jayne's sake.  Everyone has been asking about how they can give, how they can help, what they can do.  And not all of these people offering their help are people that Shay and I personally know.  

We just got word from Cherla, Aunt Extraordinaire, that her cross fit gym, Gila Valley CrossFit, are having an event in honor of Jayne.  It involves lots of sweating, lifting, and... crossing.  I have to admit, not entirely sure what cross fit entails other than waking up early and jumping fairly high in the air.  They are also having an auction which is being helped by the gracious offer of one of the members of the gym.  Well, it was facilitated by one of the members of the gym, it's actually her son who is doing something fairly awesome for our little guy.  I was unfamiliar with him, because I don't follow UFC at all, but Justin Gaethje, after hearing about our plight, decided that he would donate his gloves from his last fight to be auctioned off.  Just the fact that he is willing to do that much to help out our son is fantastic and I would like to extend my thanks to him, personally, for wanting to help my little fighter out.  Words cannot express how much it means to my wife and me for him to do this, for the gym to hold the event, and for everyone else involved.  It's nice to be reassured that, in this crazy, crazy world, there are decent people who aren't the focus of television cameras, tv personalities, or 'experts'.  There is a world that isn't represented accurately on news networks, one that I, as a big believer in humanity, am glad to see time and time again.  

There may not be more love than hate out in the world, but the acts of love that people display and act upon have a much bigger impact, both on the individuals and everyone connected within that social web.  People helping people, supporting the weak, the sick, the unfortunate, that's the side of humanity that gets civilization through the ages.  So, I thank you, tiny balls of atoms in this vast, expanding universe, for everything you have done, not just for me and mine, but to exemplify the human spirit of compassion and love.  Keep on keeping, I hold a lighter aloft for an encore.

Yes, This Is A Fertile Land and We Will Thrive

With our glorious release into the wild comes an endless stream of potential visitors.  The problem with having such a beloved part of people's lives vanish for a month due to serious illness is that, when any opportunity is afforded, all of them want to leap at the chance and grab on with both hands.  Since most of the potential supplicants don't live in the Phoenix area, we haven't had occasion to bring in Bosco, our on call bouncer.  We still have the velvet ropes up, just to class up the joint.

Jayne's first visitors were his grandparents, my parents, who came up last night.  It was a last minute decision as to whether or not my dad was going to be coming up, but to alleviate stress, he decided it would be for the best to come see our miniature Michelin man.  They came under the guise of picking up a new puppy to keep Pavel on his toes but it panned out that Jayne got out just in time for their visit.  We spent plenty of time watching him scoot around on his belly, we at some good bbq, and watched an excessively violent movie.  Jayne had a blast.  The only thing that spoiled it was his regularly scheduled medication.  Beyond that, he had fun being passed around from grandparent to grandparent, making noises, sitting up, rolling over, and yelling at his toys.

He enjoys his parents' company, he will until he's about 12 or so.  But he's an entertainer, a social creature (don't know where he gets that from), and an observer of human nature.  He loves seeing new people from time to time.  He loves seeing what sets them off, what can make them smile, or just eye-balling them.  So, it will be good for him to have a few visitors while he's outside.  It is limited to close family, due to the aforementioned lack of Bosco, but these are people he hasn't seen much in the past month.  It hasn't just been a challenge for him having to see our mugs day in and day out.  His two dueling aunts have had a rough time of it.  They can't score brownie points with our magnanimous marshmallow boy if they are quarantined from him.  I know my sister, Molly, has been missing him like crazy, and Cherla must have a Jayne-sized hole in her life that she needs filled.  Surely the other half of his grandparentage miss him just as much as anyone else.

And at some point in time, we will have to go back into the hospital, relegated to a life apart from the larger world, separated from those who love Jayne and worry about his progress, and enduring the doldrums of hospital... hospitality.  So it is beneficial, not only for our son, but for the two of us to have these people who mean so much to us to come see him and keep us near some modicum of sanity is very much appreciated.  Hell, we may even be able to approach a normal anniversary for an hour or two because of these invaluable interlopers.

I, as always, want to express my thanks to those of you who are sticking with Jayne, and with us, through this tumult.  We realize more than anyone else the sense of helplessness that one can feel when thinking about his situation.  There isn't much else to do other than offer some moral support.  The doctors and the nursing staff are doing the leg work and they are doing a hell of a job, too.  And while nothing any of us plebians can do may affect their work one way or another, it does help Shay and I to have people to reach out to, to vent to, and to just know that they are thinking of our son from time to time.  He's gathering such a large fan base that, one day, he may have cause to make the same claim John Lennon made so many years ago.  And we thank each and every one of you.

I Swallowed A Bug

Yesterday was a whirlwind of hurry up and go.  It started out with Shay and I being informed that Jayne had an ANC of 203 and that our AML doctor was more than willing to get us out of the door.  So, with the prospect of not having to watch the same three movies ad nauseam and eating something that was actually made with my own two hands, we immediately began to emulate giddy schoolgirls, so much so that I had to change into my kilt to make it authentic.  After the excitement wore down a little, it dawned on us that we would have to do something nigh on insurmountable: move out of this small room that we had been living in for a month.  It is surprising just how much stuff you can accumulate in that amount of time, what with the uncertainty of just how long you will be there, the generosity of those around you, and the realization that even the nurses, who wear the same thing day in and day out, might look askance on you if you start to do the same.

With the task before us, and an assurance that all we really needed to have happen was for Jayne's prescriptions to be filled, we started packing everything we had gathered into our nest.  We used the bags and backpacks we had brought but also improvised, using several Target and JC Penny bags in lieu of luggage (neither of which is a sponsor).  We placed his toys, which I believe they may all be part rabbit, because I'm fairly certain we only brought two when we first arrived and ended up with about a thousand, into a cardboard box.  We checked and double checked all over the room, finding every last bit of proof that the room had once been occupied and stowed it away.  Having been satisfied by our thoroughness, we hired a mule and a sherpa to lead us down to our car, both heavily laden with our burdens, from the summit of our imprisonment to the base camp that was my van.  In reality, though there was mention of a mule of some sort, we were forced to scale down our aspirations of Edmund Hillary, and settle with a Radio Flyer wagon.  It took several trips to finally square our protracted lives into our escape vehicle, but it was good exercise and helped us stay busy instead of focusing on our impending release.

But our insurance was not prepared to let us leave quite that easily.

They didn't bar our way intentionally, but there was a question of clearing Jayne's anti-nausea medicine with them, which involved our people calling their people and walking them through exactly what had gone on, what was needed, and why.  It was long process, or so I imagine, as it took about three hours to get word from our nurse that she could finally call the pharmacy and have them fill our prescriptions.  Then we'd be free.

As that took an hour or so to actually do, we sat in our empty room, Shay trying to nurse Jayne to sleep, me checking and triple checking the room just to make sure.  We did this while listening to our book, the Bands of Mourning (great book, you should check out the series; also, Brandon Sanderson is not a sponsor of ours... but if he wanted to be...).  When Shay went to fetch our drugs... Jayne's prescriptions, she was sent back empty handed because the slip for the oxy-codone wasn't signed.  Cue another fifteen minutes of waiting.  On attempt number two, it was a success and we finally had everything we needed to skedaddle.  The nurse went over his medication schedule, his heparin flushes that are to happen each day, and the general rule on what should cause us to immediately return to the hospital prematurely.  My initial thought was a cold day in hell, turns out it is a prolonged fever.  You say tomato, I say tomato.  They may be spelled the same but, trust me, the pronunciation is different.

And so, at about six fifteen, we walked down that long white mile, waving to the nurses who had come to fall in love with Jayne, who was wearing his tiny medical mask, and hoping that no one would decide that the joke had run it's course and tell us to get back into our room.

On the drive home, he fell asleep.

It feels good to be out of there, it's nice to be able to play with my son without having to keep an eye on his IV stand.  There were no interruptions last night or this morning so that a PCT could come and check his vitals, no beeping IV pumps, and, above all else, privacy.  It's a bit jarring not to have random people walking in and out of the living room.  We were even able to take the wee tyke for a walk outside today.  The sun was good for him, especially since it is nearly impossible to find liquid vitamin d in all the usual places.  The morning's activities put him in a ripe mood for a nap, so after some benadryl (as a prophylactic against anything that may have been floating around in the air) and some much needed milk time, he now lays, swaddled in his soft elephant blanket, dreaming of ceiling fans, bright lights, action movies, and nurses.

It's good to be the king.

Shiny

This morning, after everyone managed to get in a decent amount of sleep to combat whatever ailed them, we awoke to some good news.  His ANC is back up, to 128, and our nurse has tentatively said that we're scheduled to be discharged tomorrow.  Now, we'll see if his doctor will still want us to leave if his numbers aren't high enough but it is good news nonetheless.  His hemoglobin dipped this morning, so we are in the process of pre-medicating him before pumping more sanguine succor into his veins.  This, hopefully, will also put a bit more spring in his... well, standing still on hands and knees, so it should help with his brief respite back into the real world where the trees are made of lollipops, the rivers flow with chocolate, and the only people wearing nurse's outfits are those with predisposed fetishes.

Today is also the first that Shay and I will be changing his dressing protecting the insertion point of his broviac tube.  We watched a few of his previous changes and have since practiced on a disembodied chest several times.  We're fairly confident in our ability not to screw this up, as the chest piece has yet to develop an infection or die from massive blood loss or trauma.  With our impeccable record bespeaking our growth as medical professionals via osmosis, today should be a piece of cake.  Also, we will be surrounded by a flock of techs and nurses who, at a moments notice, will swoop in, taze the pair of us, and ensure that the job is done right.  I must say, I'm looking forward to it; I've never been tazed before.

In all seriousness, of which there should be some instances, it will be a good experience for us.  Not just because we will need to know how to do it just in case the sterilization of the entry point becomes compromised while we are out of the hospital.  But it also affords Shay and I an opportunity to do something that we haven't had much of in the recent past: we get to be directly involved in the treatment and care of Jayne.  I'm not implying that we haven't done everything we could to take care of Jayne while we've been in the hospital. We do all of the things we've done since the day he was born, we feed him, change him, entertain him, keep him from the various attempts he's made on his own life, and generally help him develop into human being.  We haven't been able to much more than that, however, to aid him in his battle against cancer.  We occasionally administer oral medicine and we keep an eye on him and any side effects he might start presenting him.  Now we have an opportunity to actually have a hand in something other than what they would allow a young helper wearing a football helmet.  It isn't much, and it will give him more discomfort than anything else, but it will help keep him healthy.  It is one more thing that we did for Jayne, with our own, trembling gloved hands.  I don't expect that there can be much more that we can do; we can't give him an X-ray, EKG, fix his IV, administer chemo, test his blood, or really anything else that requires 8 years of schooling to even think about doing.

In the end, though, the family which prevents horrible, debilitating infections together is the family which grows together.  Free of horrible, debilitating infections.

You Think That's a Commentary On Us?

The roller coaster ride continues for young Master Jayne and his two supplicants.  After the initial chain pull up and up and up we encountered several loops and corkscrews, throwing us one way, then the other.  At times we felt completely weightless and at other times, entirely too dense.  After finally making it through the more intense and technical portions of the track, we could almost see the station off in the distance.  Just a few rolling hills, a curve here and there, and then we'd be scot-free.  Yesterday, it seemed like we were climbing to be level with said station but it seems we aren't quite done yet.  In addition to the cold that two out of three of us have, his ANC has dropped back down to 72.  His immune system, I feel, is toying with us.  There have been more dramatic falls and rises than a Mexican soap opera.  Hopefully his long lost twin doesn't show up in the next couple days.

The nurse was quick to reassure us that this has no real bearing on our prospects for leaving soon.  Sure it went down 28 today but it did jump up fifty yesterday, so it's really anyone's guess.  His cold is still chugging along but it isn't really affecting him for the most part.  He is getting a bit crankier later in the day and he woke up a few more times last night than is his norm.  I've hinted and cajoled that both mother and son need to partake in some much needed nap time.  We'll see if my advice is taken in this matter.

Other than that, everything is as it was.  Another day of the same ole same.  Plenty of tummy time so far, plenty of drooling over toys, and, of course, smiling at the nurses.  He's still determined to get this crawling thing down; reverse is still his favorite gear but he is becoming more and more adept at turning himself to face whichever direction he pleases.  Hopefully, soon, the direction he faces is "out".

Can I Use Companion As A Verb?

As an update to my earlier post, I will keep this one short and sweet.  Or at least short.  They swab results came back and it turns out that Jayne has a cold.  Not much that can be done about it, except experience sympathy symptoms, which Shay took to with unhealthy vigor.  The good news is that his newest medical debacle will not hinder his regeneration of neutrophils, so his ANC will, with any luck, continue to shoot upward until they finally release us into the wild.  

So now that we know what is going on within our son's proboscis, there are even more restrictions placed upon the staff who desire an audience with the sniffling tyrant.  In addition to the masks they now have to wear gowns every time they enter the room to prevent carrying microscopic maladies in or out of the room.  He doesn't seem to mind, he thinks that is some sort of dress rehearsal for his spring play, and has decided to allow it.  

There really isn't much else to tell.  Jayne and Shay have very small, horned African animals plodding around within their noses, causing a stampede of bodily fluids and, in Shay's case at least, making her throat as dry and scratchy as the Serengeti.  This will pass in time, hopefully before we have the opportunity to get checked out of our accommodations.  Not that it will hinder our leaving but it would dampen the elation at being released if two thirds of us are still sick.  

There have been no new developments on the crawling front, though he managed to roll from back to front and then pick himself up onto his hands and knees.  After that he can't really help but lunge forward or roll sideways in his fervor to become mobile.  This is one of the few times that it would actually be preferable if progress slowed to a crawl.

Now we will see if we can get the wee lad down for the night, he's got benadryl coursing through his veins, milk in his belly, and mighty powerful need to get some uninterrupted sleep.  Hopefully this will prove the trifecta tonight, ensuring that he, and us, get some decent sleep tonight and awaken clear eyed and fresh faced.  Or at least not cranky and going ever so slightly mad.