No Power In The 'Verse Can Stop Me

Most people love to share, be it their cookies, life stories, their opinion of Facebook, just about anything that can be passed on from one to another.  Jayne is one of those people.  He can't share in the usual ways because his food is breast milk (nobody else really wants that), he lacks distinguishable language skills, though he does know how to communicate, and we won't let him have cookies because of Cookie Monster's tragic overdose a few years back.  But he loves to share his smiles and laughs with everyone and anyone, as long as he has been given time to size you up.  It's hard to not be affected by him when he is in a good mood (which is most of the time, all things considered).  However, his other form of charity to the people around him revolves around the one thing that all of humanity share: bodily functions.  That was precisely the method which Jayne used to wake us up this morning, peeing on mom.  It started as a rivulet but soon became a torrent of "Oh god what is that?  Why? Why?".

So that was fun.

In the past couple of days we have been visited and contacted by some very good people who were interested in spreading Jayne's story and our ongoing struggle with leukemia.  We had a photographer come in yesterday morning to capture the awesome little ball of cuteness that is my son.  He posed and smiled, even did a few things on that we had been hoping to get a picture of, like his stinkbug routine.  The name of the organization is Flashes of Hope and their goal is to photograph every single child with cancer to spread awareness of these brave individuals and the unfathomable circumstance that they and their families have been thrust into with only one option: to fight their way out as best as they can.  They not only capture just how heartbreaking it is for a child to have cancer but how, incredibly, there are twinkles of immense cheer, optimism, and strength within them.  Sometimes it is hard to see those sparks when they are hidden behind IV stands, a wheelchair, a head covering, and trapped within the confines of the walls which scream, "Sick person here!".  And so, Flashes of Hope strives to bring those dazzling lights within each child to the forefront and show the rest of the world  that cancer is not the end and that there is still something that can be done, not just for the kids currently diagnosed, but for the millions who have yet to be diagnosed, the ones who aren't even born yet.  It isn't just a fight for the now, but a fight for the future, one that I have really take upon myself to further in anyway I can.  

One of the ways that I try to accomplish this is through exposure.  No, not being dropped in Alaska naked and dipped in bear bate.  Every picture of Jayne that we put up, every charity that grabs a hold of his story and runs with it (sometimes quite literally), every person who has wanted to do something for my family, every article written about the subject, helps spread the good word.  Those words are, "We can beat this", though sometimes those words become the background of this very blog.  On Thursday night, I was put into contact with a man by the name of Rodolfo Roman, a writer for Fox News Latino.  In Florida.  He had heard about Justin Gaethje donating his gloves for the auction down in Safford and how the World Series of Fighting not only did a story on it for their website but then went a step further and donated things of their own in an effort to bring in some more financial support for the three of us.  Mr. Roman wanted to write an article on Jayne and how Justin helped him out in his time of need.  So we talked for half an hour or so about Jayne, about the leukemia, about the situation that my wife and I were suddenly thrust into, and my desire to use this experience as a spearhead to do whatever I could to help every family who has to go through this or will go through this.  

Lastly, we got a message on Facebook from one of our friends in the Mountains concerning a wristband sale for Jayne's benefit.  They are fairly simple: orange (the color of leukemia-fighters everywhere, making them very bad at being ninjas but safe when they are riding bikes at night) and saying simply, "The Boy They Call Jayne".  It's a good name, we should give a medal to whomever came up with it...  Anyway, it's five dollars per band and there are two sizes, youth and adult.  My sources tell me that youth fits adult, so I think it should be more akin to adult and Hulk but that's just me.  They should be here in a week or so, I don't think there is a group or event page on everyone's favorite stalking medium, but the post was shared by Shay, Cherla, and myself.  

I would, again, like to thank everyone who has thrown their hat into our ring.  Not just financially but morally as well.  It has been very helpful to us to know that we have so many people rooting for Jayne and willing to help out however they can, even if that is just sharing this blog with others around them or telling them about the auction or marking Jayne's Day on your calendar (it's June 11, in case you forgot, more to come on that).  Sometimes the best thing that you can do is just to be there and we are quite lucky that our friends and family are as amazing as they have been.  Thank you all, I consider each and every one of you to be my friend.  Your support of this tiny lad fighting for his future and, in some aspects his very life, makes you mighty.  

That's Why I Don't Kiss 'Em On The Mouth

Jayne is back to doing his best Andy Dufresne act.  Armed only with his spoon called tenacity, he's more than ready to go back to climbing through the sewer pipe that is chemotherapy.  Morgan Freeman, surprisingly, will not be making an appearance, but he is going to read the audio book.  He is one chip in the concrete closer to busting out of this joint. 

When we got out of the clinic and into the hospital proper, we found that our new room might have actually appeared in an episode of "Orange is the New Black".  It was actually a transplant room, so every occupant would be wheelchair bound.  The bathroom was the size of some apartments I've been in.  But due to the gargantuan nature of the lavatory, there was very little room for much more, like a couch.  So, faced with the very real possibility of living in the hospital sleeping on the floor in our own blanket nests where we would keep the bits and bobbles we found along the way, our nurse decided that registration had made... an error.  While Jayne started his first round of chemo (thankfully it started well before the "Now we'll never get any sleep" threshold), the staff got another room, one appropriately furnished, ready for us.  In the time it took me to lug everything up from the van and Jayne to finish his injections and flushes, we were in our new room.  That's when we remembered that the floor was actually softer than the couch but by that time, we didn't want to be "those people" and let it be.

The little guy charmed his nurses and techs, as usual, and there was a bit of a furor over the return of the boy they call Jayne to the seventh floor.  We got several care packages, one from Child Life which included a new bouncer, a DVD player, a few new toys, and a very soft pirate blanket.  The other gift we got was from Child's Play which, if you aren't familiar with it, is a children's charity run and supported by gamers of all shapes and sizes.  Even though he was a bit young for it, the toddler game pad was a very cool gift, something I'm sure he will enjoy when we have to come back in the coming years for his unending follow-ups.

We also got a chance to talk to the AML doctor yesterday, focusing mainly on how he was progressing and what we could look forward to for this round.  One of the topics that came up, though, centered around the "after", that mythical period in time where Jayne will be, hopefully, cancer free and back on track to making our lives miserable joyous.  After chemo number four, we will have to come back to the clinic in Phoenix once a month for the first year.  If he's still reading clear then, it will slow down to once every three months, then six months, then, finally, once a year.  We can't really say just how long we are going to have to keep coming back, there is always a possibility that, like diarrhea, it could strike when we least suspect it.  I think that's the most difficult concept with cancer that people have coming to terms with.  It isn't like getting a disease or a virus; cancer is not an invading force, it is an insurgent effort, with the leukemia thinking it has cell's rights despite the fact that is, in fact, part of a larger organism that ultimately sets the guidelines and makes everything work together.  That doesn't mean that he will be permanently sequestered to hospital rooms for the rest of his young life.  If everything goes well, he won't have to see the inside of another hospital room until the day his first born arrives (which isn't even a certainty there).  There isn't much more that we can do in that regard other than just being his parents and raising him as best we can to be a decent person who won't use the fact that he had cancer as a baby to guilt others into doing what he wants.  

I cannot guarantee the last.

 

Huh. I'm Starting To Like This Plan

For most people, receiving a call from the hospital is rarely a good thing.  It's usually to tell you that that growth you were concerned about is malignant.  Or thousands of spider eggs under your skin.  If it isn't somewhat unfortunate news, it is horrifying and may require you to go through years and years of therapy before you can order calamari every again.  That isn't entirely fair, though, because sometimes it's good news.  Which is what it was today.

As most of you know, we were at the hospital on Wednesday getting another lumbar puncture and bone marrow aspiration to determine what his MRD was, which would then dictate the course his treatment would take.  Turns out, we caught a bit of a break.  His leukemia blasts were at two percent, which was well below the threshold of five percent.  So, because there was minimal residual disease, he will not be needing a bone marrow transplant after all of his chemotherapy and his next two treatments will be slightly protracted followed by one last, hard-hitting round to wipe out even the smallest amount of leukemia lurking within his body.  Everything up to this point has always gone to the least favorable route for the lad and he's taken it in stride, battled through it, and come out victorious.  At least he won't have to go through the rigors of getting a transplant and possibly getting regular check up to make sure that the cancer hasn't flared up again, dooming we three to another stint in the big little person's house.

On top of that good news, I'm sure that most of the people who read this blog, saw, in some form or another, that Jayne was recently featured in an article for the World Series of Fighting.  It was written to highlight the generosity that Justin Gaethje, who grew up in Safford and is currently the lightweight champion of the WSoF, showed my family.  He donated the gloves from his recent victory and inspired the Word Series of Fighting to also donate a few things to be offered at the raffle, put on by Gila Valley CrossFit.  We haven't gotten word on how it went, but the fact that these people donated anything to help my son battle cancer is enough.  I will try to keep everyone up to date on the outcome and if there are any other ways in which they can contribute, should they feel the need.

As I've said over and over, thank you to everyone who has given something to help us out.  It hasn't been easy and it certainly looks to only be getting more and more difficult.  Every little bit is appreciated and I hope that this experience can put into perspective just how heart-wrenchingly challenging this is for every single parent and child who is going through or will go through circumstances such as our.  As much as I appreciate people giving for the sake of my son's well-being, I would love it even more if Jayne inspires each and every one of you to think beyond this one infant, to the world of childhood cancer, a dreary, depressing world that is somehow pierced through with rays of sunshine in the form of a child's smile.  Children who have no reason whatsoever to be smiling manage to be happy and optimistic because they are surrounded by people cheering them onward and doing everything they can to help them in their fight.  Whether it's a small donation of a dollar, the effort it takes to get charity events up and running, people using their position or relative fame to help those in need, or just being a strong and caring parent when the time to step up arises.  This is a fight for us all to take up because children with cancer, who have to live their lives out in hospitals and clinics, should have the opportunity, even for an hour at a time, to be a kid and to have hope.  Jayne gets that hour thanks, in large part to all of you, hopefully, someday, another two or a dozen or even a hundred kids can get that hour because of his struggle right now.

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.