Hamsters Is Nice

Today brought good news for Jayne and for our sanity.  Amidst his newly founded love for babbling, we found out that his ANC was up to 100.  Not that this necessarily means that he will continue to skyrocket towards the lofty goal of 250, but it is a huge leap in the right direction.  That means that we have to start thinking about the logistics of moving out of the hospital room.  Since we can't really know exactly when he will have a sufficient immune system, it would be premature to even start packing our things up.  Most of what we have will prove to be superfluous and we can probably anticipate only needing clothes for a few more days but given how sporadic his progress has been we could just as easily be here for another full week before getting the go ahead.

That brings me to another development: Jayne has begun to leak profusely from his nostrils.  Combined with some coughing and an increase in sneezes, it give us all pause.  The nurses just finished doing a swab of his inner nostrils, something which upset him greatly, so we will have word on what, exactly, is causing his snotty nose and sneezes.  If it is a virus, it will set us back a bit, since there isn't much that they can do to treat a virus.  There is also a chance, in my mind at least, that he is merely experiencing the effects of allergies with a compromised immune system.  Shay does have allergies of her own and there are plenty of people coming in and out of his room.  The chances of a stowaway particle of dander or pollen riding shotgun on the nurse's shirt aren't minuscule.

All of this is speculation, so I will keep everyone up to date when we find out more, ill or otherwise.  Now I must away, as he is currently dousing our bed in drool.   Thank you to everyone for your continued support.  Jayne appreciates it immensely.

I Like Smackin 'Em

These past two days have been pretty fantastic.  Yesterday morning, Jayne had an ANC of 15.  Not a bad number, considering that his number the day before was 14.  However, today, his ANC is 30.  His system is rebounding in leaps and, well, bounds.  We are one step close to sleeping in a normal bed, maybe taking him for a walk near the suggestion of other people.

Yesterday was a big day in the function aspect of Jayne's recovery.  Not that he has learned how to use the toilet or even say something other than "babahbahbabahbaha".  It is, far as I can tell, his favorite word.  But we have a date for Jayne's benefit concert.  It will be June 11th at the lower baseball field in Show Low.  This is, in large part, due to the efforts of Burt Bradford.  Burt is my old boss, up until everything went sideways in our lives, and he is one of Jayne's biggest fans.  He taught Jayne how to wave, he has developed a system to deal with the glares that Jayne will occasionally assume in his day to day life.  Burt is one of my best friends and he really has shone through by spearheading this effort for my son.  He has taken it upon himself to not only schedule the event but to cover the insurance and reach out to food trucks in the area that may be interested in feeding the masses as they rock out for my son.

Another personality behind this benefit concert, beyond Burt and Kristen, who has done a lot for the Jayne's cause, is Jesse Valencia.  Despite his sometimes off-putting appearance, Jesse is a good friend and wonderful artist.  His band, Gorky, will be present at the concert, presenting all of us with some tasty jams.  We are still building the presence, even to the point where Cherla has offered her ability with a violin for Jayne's future.  There was even a talk of a ukulele.  If you have any interest in finding out more about this Show Low Woodstock, you know where to find me, if no one else.  I can pass on whatever message you have.

Lastly, I would like to mention my one-time mentor, long-term friend Farrel Adams.  If you're unfamiliar with the name, he is currently the principal of the high school I graduated from.  I had the immense fortune to be a part of the last class he taught before going into administration.  I talked with him, at length, not only about the support that Show Low High School could offer my son and my family but how we could, eventually, inject some goodwill back into the community that I grew up in.  We talked about different ways that Jayne and I could give back, earn some of that charity we have received from all walks of life.  I have not been shy about the fact that, while I am very interested in the financial situation of my family in this difficult set of circumstances, I intend to establish some sort of base for families and children that have to go through similar situations as us.  There is no reason that any kid, of any age, has to feel unsupported through such a difficult time in their lives.  I plan to expand this program to, somehow, provide opportunities for kids who aren't able to afford the fees into fitting in.  That sounds like an odd way to put it, but if you can't afford to play sports, be in the band, or if you're school has decided that football is more lucrative than drama, you can't fit in because you are not given the chance to find your place.  I hope, one day, to create something for the community that I upset and offended by virtue of my free tongue and different ideals.  Kids need a chance to be kids in whatever they excel at.

We Should Start Dealing In Those Black Market Beagles

For those of you who are wondering, Jayne is fine.  He didn't present any symptoms from the mix up yesterday and his ANC actually went up.  It was 13 yesterday, today it is 14.  Progress is progress, even when it's taunting you.  We've had the doctor come in to tell us that he will be starting his antibiotics again in the afternoon, encasing him, once again, in the sticky pink armor against infection.

With his ANC appearing to be on the rise, everyone is starting to gear us towards our eventual exodus, short-termed though it may be, from the hospital room.  We have a list of the medicines he will be taking during his parole, a chest mannequin was brought in so that we could practice changing his dressing, and there is a stack of papers accumulating, all written in verbose medical jargon, about exactly how not to screw up while we are away from professional help.  It's fairly reassuring because we might actually be getting out of this place.

And just in time, too.  While Jayne was catching up on some tummy time this morning, he managed to pick himself up to his knees on his mat, ready himself, and then actually managed to propel himself forward with his feet and pick up his hand.  He would have actually pulled it off, had he not been holding a toy in his other hand.  Instead of mobilization, he lunged forward, performing a halfway barrel roll, landed on the mat, and then rolled on to the blanket around his mat.  He looked surprised, not necessarily at landing on the unpadded floor.  I don't think he knew exactly what he was doing.  Afterwards, however, I could see the gleam in his eye, equations, charts, graphs, and toy pianos ghosted in front of his eyes and he started to rock back and forth, getting ready for another attempt.  Then promptly put his face fully into the blanket and began to eat it.  Ah, to be a baby, where even failure is adorable and applauded.

Another thing that I wanted to bring up is that, since we are getting to the end of our first stint, we are coming upon, logically, our second round of treatment.  This means that he will need another bone marrow aspiration to determine how well his body, in concert with the chemo, is killing the malicious cancer cells.  If it appears that there is very little or no presence, then he will have two similar treatments ahead ending with a much more intensive round at the end.  This is called the low risk outcome.  Its opposite is, clearly, the high risk outcome.  If he is high risk, he will receive the intensive round of chemo next and, most likely, a bone marrow transplant.  This is the thing that Shay and I have been asked about nonstop and, up to this point, we haven't really had an answer either way.  But to err on the safe side, anyone who wants to get themselves tested, by all means do it now.  United Blood Services offers a bone marrow testing and enters you into the database.  I'm unsure if there is a fee attached to this, it's changed so many times in the recent past that it's best to just call and ask or, if you're not a troglodyte, go here.  There is also Be The Match, which is specifically for bone marrow matching and donations.

If you don't want to have to go through the process of getting an aspiration (I have it on good authority that they are very uncomfortable), there is another way that you can help, should you feel helpless in the face of Jayne's adversity.  He has consumed... been given a fair amount of blood and platelets in his stay here and it looks like he is going to be using more in the coming months to keep his levels up.  Hospitals and ERs always need blood, of any type, so going out and giving blood with Jayne in mind is one way of feeling more physically involved, should your psyche need that.  You can also choose to give platelets, or plasma, which would actually be helping out in an even greater capacity.  The process does take longer and it does leave you feeling a bit more drained than the average blood donation, but platelets are always in demand and the amounts in storage are always needing to be replenished.  Maybe hum a little bit of the "Hero of Canton" while you sit there.

In whatever capacity you choose to help out, it is appreciated, even if it won't directly benefit Jayne in his struggle, it could help some other family, some other child, in his name.  I know that Shay and I appreciate all that we have received from strangers who never knew Jayne existed when they decided to donate their precious fluids.  They are part of the reason Jayne is still healthy and strong.  So thank you, silent sanguinators, oh happy hematological heroes, you helped save my son's little life.  To those about to rock, we salute you.

Sleepiness Is Weakness of Character

Well, Jayne had an interesting afternoon to say the least.

At around 4 or so, after Shay had gone out to visit with her parents and brother, our AML doctor and the head nurse came into the room.  They said that they needed to tell me something about Jayne and they wanted mom in the room.  She was incommunicado, so they decided to just tell me.  They started off by saying the worst thing a doctor could possibly say:  "You might want to sit down."  

Really?  I might want to sit down?  How about you just tell me what's going on instead of giving me the Grey's Anatomy?  I'm a big boy whose little guy has been diagnosed with leukemia, I'm pretty sure I can take whatever you're about to throw my way without fainting into a pile of clothes.  I didn't, of course say that, I don't want Jayne to pick up on my snarkiness just yet; he's too young to be an asshole.

It turned out that there had been a mix up with Jayne's antibiotics earlier and he got a larger dose than he was supposed to have received.  They had called the toxicology and poison control department and got them working on what they could expect from such a mishap.

Now, it wasn't a life threatening issue, so simmer down all of you out there grasping the sides of your computer, wailing aloud, gnashing teeth, beating breast, rending flesh.  It was especially innocuous since the overage was slight, even if still worrying.  The most serious side effect was mainly neurological with said antibiotic, in the form of seizures, confusion, lapse in memory, and suddenly reciting lines from "Flowers for Algernon".  After the doctor had left, telling me that the head of poison control was on his way to discuss Jayne's situation with me, I called Shay back, apprised her of the situation and Jayne and I hung out on the couch, him chewing on his monkey's tag, me trying to figure out if he was spontaneously morphing into Cliff Robertson.

The poison control doctor told me that he had received a small dose over the limit and that we should keep an eye out for the aforementioned seizure or some sort of neurological jerkiness.  I didn't have the heart to tell him that, at five months old, most of his motions are jerky and erratic.  With the symptoms to keep an eye for disclosed, he said that they would hold off on his next few antibiotic treatments until his kidneys had successfully filtered out the offending drug.  This wasn't really an issue, since his kidneys are functioning rather well and they keep an eye on his intake/output like hawks on smaller hawks.

Everything is still in order; he is as flirtatious and ostentatious as ever.  He's eaten a bit, thrown up a bit more than usual today, which is nothing to worry about, and even managed to put himself to sleep while Shay got ready to feed him.  Right now, the nurse it attempting to administer one of his oral medicines, with varying degrees of success.  It's really the only time he's been upset today and part of it is due to the fact that he is getting rather sleepy.  And with that sentiment still fading from the tips of my fingers, we three bid you goodnight.  May the sheep not accost you.

My Food Is Problematic

Last night was a cacophony of cries, beeps, sweeps, and creeps.  We weren't stuck in the middle of a Spaceballs marathon, although I wouldn't have changed the channel, but an attempt by our IV stand to conduct some sort of sleep deprivation experiment on us.  Thankfully, Jayne is fairly resilient to outside noises when he's deep asleep.  After he got his midnight benadryl, his stomach calmed down and his sleep came easy and peacefully.  While Shay and I were denied our own drugs, we managed as best we could, waking only occasionally to change his diaper when it was full and to feed him somewhere in the wee hours of the morning.

It's become the norm, having him fight sleep after dinner and lights out.  Part of this is due to the chemo, part because the hospital routine has seriously messed up his sleep schedule, and because there's someone in here, checking on him, every two hours or so.  If you haven't ever met Jayne in person, let me tell you, he's pretty amiable and, unlike his father, fairly social.  He loves people, even new people wearing yellow masks.  He likes to study them, observe them, smile at them, and talk to them.  He's an entertainer, he has to make sure that everyone is having an acceptable amount of enjoyment whenever they are near him.

Yesterday, we changed his broviac dressing, so that meant that he would get a bath (his favorite) and be surrounded by three nurses and his parents.  During his bath he splashed and splashed, having the time of his life.  He also wanted to make sure that Shay and I were having a good time watching, occasionally looking up at us to smirk.  After we wiped the walls and counter dry and toweled him off, it was time to change his dressing.  As per usual, he took it like a champ, looking from person to person and then to large, spinning light Shay was holding.  He didn't fuss from the procedure, he didn't squirm away, just looked at everyone in turn, making sure that he knew what they were doing.

When it was done, he showed off his sit up skills, he smiled for the nurses, grabbed at their hands, and was generally the happy baby he usually is.  We got to carry him around, unhindered by the IV stand, as they changed his lines.  I spun him around in circles, first one way, then the other.  It was the first time I'd been able to do that in a long time.  When we both started to get dizzy, we stopped and he took a small nap.

He has also discovered a new game: Eskimo kisses.  Mild racism aside, it is pretty damn cute:

As I said before, he's sitting up (as long as we hold his legs, he hasn't gotten it completely down), he can sit up by himself and lift himself up onto his knees.  Like I said yesterday, his development is not being stunted in the least, it's just unfortunate that a lot of this growth has to be from within sick bay.

Thanks to everyone who is supporting us, we appreciate whatever help you have offered.  I know that there are a fair amount of people who have given up some of their time in trying to come up with ways to help Shay and I financially, not least of which is Cherla, Shay's sister, and Kristen, who is working on fundraising opportunities in the White Mountains.  In reality, there are too many people for me to thank who have pitched ideas, written lyrics, drawn pictures for t-shirts, and so much more that I couldn't possibly name them or thank them enough, so a simple, general thank you must suffice.

As a final aside, my best friend Kevin just had a daughter a couple weeks ago, right before we first took Jayne down to Phoenix oh so many days ago.  In a show of infant solidarity, Kevin sought out matching orange onesies, one for Robin, his daughter, and Jayne.  Clearly written on the left breast has been our constant mantra, our go to, and something that I cannot agree with more, simple as it is: Fuck Cancer.

Some People Juggle Geese

After a night of abrupt awakenings, fussy feeding, deluged diapers, and a touch of self-urination, we all awoke to promising morning.  Shay did some laundry on the third floor and I got to sit with Jayne while he adamantly grabbing at his feet and IV lines.  About the time that Shay got back with breakfast, our resident doctor came in to let us know that his ANC had dropped to zero.

Talk about a buzzkill.

But his fever has stayed down, his blood pressure is normal, and everything in his chest cavity and abdomen sounds great.  Yet we are still held captive by uncooperative neutrophils.  It isn't as bad as it might seem.  We still play with him, we still get out of the room every now and then, and, most importantly, we haven't started carving tick marks in the wall and singing bassy blues.  There is even a hope that Shay and I will be out of these four walls in time to celebrate our first anniversary.  By sleeping for eight hours that night in a real bed.

Even if we only have a week out of the hospital, it will still be good to be able to take Jayne for a walk in the sun so that he doesn't look like the singer from the Smashing Pumpkins when we have to check back into medical motel.  It will be nice to let him sleep through the night without vital checks, without having to administer oral medicine every few hours, or be accosted by an ever-changing merry-go-round of nurses wearing masks.  As tough as he is, it is start to weigh on him.  He's getting cranky, as cranky as our very reserved, very inquisitive little guy can be.

But he still has a smile for everyone.

Yesterday Jayne and I had a dance off, albeit just using our heads and shoulders.  He had a blast.  We played peekaboo, he laughed and laughed.  He still squeaks, squeals, exclaims, oohs and ahhs, smiles, and laughs.  There are teenagers on this floor who can't force themselves into such outward displays of happiness.  So, yes, it is starting to affect him, why wouldn't it?  But he is also persevering.  There were some fears that Jayne wouldn't develop, physically, mentally, or emotionally, the same in the hospital as he would have had his blood and bones not betrayed him.  For some children, I'm sure that is the case, and it must take a very long time for their behavior and development to adjust back towards something approaching normalcy.  Jayne is a special case, as anyone who had ever met him would attest.  

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.