Little more than two days out from his last chemo injection and Jayne is having the worst time so far. Since day five or so of his injections, his stomach has really been a prime issue. It won't let him sleep for too long without a myriad of anti-nausea drugs coursing through his tiny veins and he's begun to vomit a bit more frequently than our meager wardrobe can afford. If he hasn't eaten at all, what comes up is a bright yellow viscous liquid that resembles something that Nickelodeon once dumped on peoples heads. If he has, he gives us a full account of what exactly it was that had been unfortunate enough to be floating in his system. Needless to say, the little guy is quite miserable and our hospital floor has started to resemble a movie theater floor, much to the consternation of the cleaning ladies.
Thankfully he's such a unique little baby that this hardly phases him for too long. He's more upset at the subsequent cleaning required than the brief imitation of Linda Blair he had just attempted moments before. True, he does have his moments, with his roiling stomach at war with his immense desire to just lay his head down on one of our chests and go to sleep. The only thing we can do is bear with him and try whatever we can to make him comfortable and happy.
This is, after all, nearing the home stretch. His body has performed admirably up to this point and, with a slight change to the dose of one of the harsher chemo treatments, it's understandable that he would finally start acting less like a terminator and more like Kyle Reese. It doesn't stop him from being a bad ass in everyone's eyes but a not so gentle reminder that he is only a tiny human being enduring an extremely rigorous medical treatment to root out and even more sinister malady. It's easy to forget that Jayne, the growing little boy who's bringing leukemia to it's knees, is just that: a little boy. A little boy going through something very large and scary and unsettling.
His ANC has been going down steadily, correlating with his rise in nausea and crankiness, and the steady march towards going home before the last, long chemotherapy progresses yet another day. As much as I look forward to the day when we won't have to caution our son from yanking on the tubes sticking out of his chest, when we won't have to chase him around with the IV stand like some medical attendant out of Beauty and the Beast, I must admit that the idea is a bit hard for me to wrap my brain around. We've spent, seemingly, a very long time going through this ordeal that it's almost an insurmountable task ahead of us to adjust back to normal life. How do you rebuild your life which you helped take apart, piece by piece, and then move a third of it, a quarter of it, 200 miles away and erect only a fraction of that which you took with you? I've no doubt that it can be done, it's been done by so many families so many times that my concern seems laughable. Just one more thing to add onto the ever growing Jenga tower that has become my small corner of the Wood family. The only real comfort is that, though it may sway every know and then, I don't think for a second that it will topple and scatter to the winds. But the most difficult aspect is not building the tower up and up, but putting the blocks back where they belong.
Wednesday, May 4, 2016
Monday, May 2, 2016
Well My Days Of Not Taking You Seriously Are Certainly Coming To A Middle
Well, it's certainly been a while but today, at around 2 in the morning, was Jayne's last chemo treatment for his third round of chemotherapy. It was preceded by some rather intense vomiting and some general crankiness before we finally gave in and ordered him some benadryl. After being properly dosed up, he was more than willing to lay down and let his mom feed him. He even managed to sleep through most of the night. And so now, with three of the four treatments completed, we wait for his ridiculously high
ANC (over 2000!) to drop down to zero before it makes the arduous journey back up to acceptable levels. This should take no longer than it did with the last treatment, so we anticipate being out of the hospital for our short, and final, reprieve around the 24th of this month. After that will come the last and most intense course that Jayne will have had to go through. 14 days of chemo to blast the remaining cancer cells, if there are any, out of his system, time to allow his ANC to come up, a bone marrow aspiration as a final check to see if he is, in fact, cancer free, and then his broviac tube will come out. Even by a conservative estimate, that means we will be able to escape from Phoenix by the middle of July.
It's hard to believe just how long these past few months have stretched out, both because of our confinement to our antiseptic holding cell and because of the leaps and bounds that Jayne's development has taken. He has taken to crawling like a fish to flopping on the deck of a boat. It's no longer an ordeal for him to pull himself up and scoot along the wall, the couch, the bed to get at whatever we have missed in keep something else out of his reach. He's becoming much more vocal, singing along with Frozen or constantly making raspberries at the nurses or his parents. He's fairly confident in his ability to convey "bye bye". Not that he actually says it, not on purpose at least, but he has gotten the wave down.
Oh, and his first tooth is coming in.
It's sometimes unfathomable just how much has happened to our little guy in this short amount of time. He looks like a little boy, not just an infant. His personality is starting to shine through and he's starting to have very real reaction to his mother and I. Our little baby, who this time last year was nothing more than a black and white picture on our fridge, is turning into a wee lad. And he's done all of this while kicking the crap out of leukemia. Most kids his age don't have to worry about grabbing the cords inserted into his veins and ripping them out. Most kids don't have to worry about being tethered like some inmate breaking rocks. Despite these limitations, which are merely the tip of the iceberg, he has been a bright ray of sunshine, winning over the hearts of every single person who he has come into contact and being an inspiration to every single one of us. If this baby can get through such adversity with a smile on his face, surely we can muster the same determination within ourselves to overcome whatever comes our way.
My son is, in my eyes, Superman. While the radiation of the yellow sun, like the medicine and science doing most of the legwork in his fight with cancer, did make Superman super human, it did not make him a superhero. Even if he isn't stepping into the ring with each and ever cancer cell and knocking them out one by one, he still has the heart of a fighter, of a hero. His fight is with the things that surround him, not that microscopic civil war within his blood stream. All of the tests, all of the poking, all of the medicine, the strangers, the unfamiliar places, the uncomfortable machines, the tubes, and the utter lack of ability to fully understand what is happening to him and why are all things that would have left most people stooped and trodden upon, feeling lost and depressed. But he has taken everything in stride, putting one hand in front of knee at a time, and just smiling when another thing pops up. He's an extraordinary little guy and he always will be.
So, thank you all, once again, for supporting my Kal El. It isn't easy for anyone to watch a baby go through what he's been through and we are very grateful for everything that everyone has done to help the three of us get through this and, more importantly, land on our feet when the hospital makes us hand in our decoder rings. It's always nice to know that wherever we look, we have people supporting us in whatever way they can, whether they are family and friends or the doctors and nurses working tirelessly to get Jayne back up to a hundred percent.
ANC (over 2000!) to drop down to zero before it makes the arduous journey back up to acceptable levels. This should take no longer than it did with the last treatment, so we anticipate being out of the hospital for our short, and final, reprieve around the 24th of this month. After that will come the last and most intense course that Jayne will have had to go through. 14 days of chemo to blast the remaining cancer cells, if there are any, out of his system, time to allow his ANC to come up, a bone marrow aspiration as a final check to see if he is, in fact, cancer free, and then his broviac tube will come out. Even by a conservative estimate, that means we will be able to escape from Phoenix by the middle of July.
It's hard to believe just how long these past few months have stretched out, both because of our confinement to our antiseptic holding cell and because of the leaps and bounds that Jayne's development has taken. He has taken to crawling like a fish to flopping on the deck of a boat. It's no longer an ordeal for him to pull himself up and scoot along the wall, the couch, the bed to get at whatever we have missed in keep something else out of his reach. He's becoming much more vocal, singing along with Frozen or constantly making raspberries at the nurses or his parents. He's fairly confident in his ability to convey "bye bye". Not that he actually says it, not on purpose at least, but he has gotten the wave down.
Oh, and his first tooth is coming in.
It's sometimes unfathomable just how much has happened to our little guy in this short amount of time. He looks like a little boy, not just an infant. His personality is starting to shine through and he's starting to have very real reaction to his mother and I. Our little baby, who this time last year was nothing more than a black and white picture on our fridge, is turning into a wee lad. And he's done all of this while kicking the crap out of leukemia. Most kids his age don't have to worry about grabbing the cords inserted into his veins and ripping them out. Most kids don't have to worry about being tethered like some inmate breaking rocks. Despite these limitations, which are merely the tip of the iceberg, he has been a bright ray of sunshine, winning over the hearts of every single person who he has come into contact and being an inspiration to every single one of us. If this baby can get through such adversity with a smile on his face, surely we can muster the same determination within ourselves to overcome whatever comes our way.
My son is, in my eyes, Superman. While the radiation of the yellow sun, like the medicine and science doing most of the legwork in his fight with cancer, did make Superman super human, it did not make him a superhero. Even if he isn't stepping into the ring with each and ever cancer cell and knocking them out one by one, he still has the heart of a fighter, of a hero. His fight is with the things that surround him, not that microscopic civil war within his blood stream. All of the tests, all of the poking, all of the medicine, the strangers, the unfamiliar places, the uncomfortable machines, the tubes, and the utter lack of ability to fully understand what is happening to him and why are all things that would have left most people stooped and trodden upon, feeling lost and depressed. But he has taken everything in stride, putting one hand in front of knee at a time, and just smiling when another thing pops up. He's an extraordinary little guy and he always will be.
So, thank you all, once again, for supporting my Kal El. It isn't easy for anyone to watch a baby go through what he's been through and we are very grateful for everything that everyone has done to help the three of us get through this and, more importantly, land on our feet when the hospital makes us hand in our decoder rings. It's always nice to know that wherever we look, we have people supporting us in whatever way they can, whether they are family and friends or the doctors and nurses working tirelessly to get Jayne back up to a hundred percent.
Sunday, April 17, 2016
Planet's Coming Up A Mite Fast
The past few days have been quite eventful indeed. Not only has wee baby Jayne been crawling around the entire hospital room roaring like a dinosaur and smashing cookies into his play mat, but he's also had three dressing changes in five days, two of which were "emergency", he pulled out his IV tubes (not the actual broviacs, so it wasn't as bad as it sounds) twice yesterday, even managing to get the aforementioned cooked jammed into one, and has been generally terrorizing his mother at night when he should be sleeping. On the positive side, his ANC has been climbing rather quickly over these hectic days, culminating in the news we got today that he hit 260 this morning. This was rather exciting since the last time we were discharged from the hospital, we had been given the pity vote to let him leave when he topped 200, since we had been in the room for so long, waiting for his ANC to recover. This time around was fairly long as well, if the tick marks on the wall and the chained skeleton in the corner are any indication, but getting out six days earlier than before is still a marked improvement.
And now, as we begin to go through the logistics of packing our base camp up and moving out for a while, we come to the halfway point of his chemotherapy. It seems such an indeterminable amount of time that he has been battling cancer that it is almost incredible to think that there is a halfway point. Yet, here we are, staring down the mad junk yard dog which has wreaked havoc in families past that is childhood cancer and, it would seem, that Jayne is actually making that dog cow and roll over for him. Now, we aren't halfway through this entire experience, not by a long shot, seeing as how we'll be coming to clinics until he is getting ready for first grade, if not longer than that, but it nice to think that we won't have to be tethered to the IV stand, to the hospital, to this accursed desert village for very much longer.
When be started this whole ordeal in the beginning of February, the road ahead looked so impossibly daunting, so terribly devastating, so thoroughly apocalyptic that neither of us was quite sure what to make of it. We had no idea what to expect from the process or from the hospital. We didn't know what this would do to Jayne's development, to our marriage, or to our lives from then on. It was a giant black hole which sucked up any sort of foresight and presented such long, yet unfathomably, odds that even Vegas wouldn't touch us with a ten foot Mafia-run pole. We've come beyond the event horizon of Jayne's journey through cancer treatment and now we sit on the edge of an entirely new dimension, one where our son has cancer but he is slowly, but surely, beating it back. He's crawling around, developing his social skills, roaring like a dinosaur, trying out the different flavors of raspberry there are to be explored.
That isn't to say that none of us has come out unscathed by this whole experience, what with me having to work a bit more, leaving Shay here to tend to the small monster that they switched for our son in the hospital where he was born, but we're working through it. It isn't something that we could have anticipated when Shay and I first found out that we were going to have a baby, it wasn't spelled out on our wedding cake that we would have to watch our son simultaneously weaken and forge himself through the fires of leukemia. Now that we are here, I don't think that either of us would have balked at the opportunity because our little family is pretty much the best thing we have going for us and that will continue to be the case as it grows up and out, ever so slightly. One of the coolest things, I always said, was that I could marry my best friend and then, as a result, create another best friend out of that. I wouldn't trade anything at all for what I have now, cancer and all, because that's just how life goes sometimes. We didn't have any control over the way that our DNA was spliced within the fertilized zygote that, 9 months later, gave this little ball of awesome to Shay and I. Really, the only control we have is in our reaction to this entire situation and how we choose to view it.
Along the way, and quite likely throughout the entire process, there has been quite a bit of outpouring of support for the three of us. Our loved ones, our friends, our distant acquaintances, and complete strangers have shown us just how giving people can be when presented with the opportunity. There has been an incredible amount of work put into supporting us while we support Jayne in his fight, from baked goods to organizing fundraisers for us. Every little bit has been greatly appreciated. We've also received a fantastic amount of support from the hospital itself. The PCT's, the nurses, the doctors, even the cleaning staff have lent as much support as they could to help us through this. Some of them did this in very personal ways, those of whom had day to day contact with our little unit. The nurses and techs have all been helpful and loving in every way they can. After all, it's hard to meet Jayne and not instantly fall in love with him. The doctors have been tireless in their treatment of the leukemia and everything else that has popped up, from the sporadic fevers to the potential contamination of his line (yet again, he rolled around in his poop; I didn't think he had had that much contact with our dog before going to the hospital). PCH has been instrumental in Jayne's recovery. Their research, methods, and precautions are the reason that he is doing so well and I'm very grateful to every single person in this building for what they've done for my son and what they will continue to do for future sons and daughters of all ages who come through their doors.
And now, as we begin to go through the logistics of packing our base camp up and moving out for a while, we come to the halfway point of his chemotherapy. It seems such an indeterminable amount of time that he has been battling cancer that it is almost incredible to think that there is a halfway point. Yet, here we are, staring down the mad junk yard dog which has wreaked havoc in families past that is childhood cancer and, it would seem, that Jayne is actually making that dog cow and roll over for him. Now, we aren't halfway through this entire experience, not by a long shot, seeing as how we'll be coming to clinics until he is getting ready for first grade, if not longer than that, but it nice to think that we won't have to be tethered to the IV stand, to the hospital, to this accursed desert village for very much longer.
When be started this whole ordeal in the beginning of February, the road ahead looked so impossibly daunting, so terribly devastating, so thoroughly apocalyptic that neither of us was quite sure what to make of it. We had no idea what to expect from the process or from the hospital. We didn't know what this would do to Jayne's development, to our marriage, or to our lives from then on. It was a giant black hole which sucked up any sort of foresight and presented such long, yet unfathomably, odds that even Vegas wouldn't touch us with a ten foot Mafia-run pole. We've come beyond the event horizon of Jayne's journey through cancer treatment and now we sit on the edge of an entirely new dimension, one where our son has cancer but he is slowly, but surely, beating it back. He's crawling around, developing his social skills, roaring like a dinosaur, trying out the different flavors of raspberry there are to be explored.
That isn't to say that none of us has come out unscathed by this whole experience, what with me having to work a bit more, leaving Shay here to tend to the small monster that they switched for our son in the hospital where he was born, but we're working through it. It isn't something that we could have anticipated when Shay and I first found out that we were going to have a baby, it wasn't spelled out on our wedding cake that we would have to watch our son simultaneously weaken and forge himself through the fires of leukemia. Now that we are here, I don't think that either of us would have balked at the opportunity because our little family is pretty much the best thing we have going for us and that will continue to be the case as it grows up and out, ever so slightly. One of the coolest things, I always said, was that I could marry my best friend and then, as a result, create another best friend out of that. I wouldn't trade anything at all for what I have now, cancer and all, because that's just how life goes sometimes. We didn't have any control over the way that our DNA was spliced within the fertilized zygote that, 9 months later, gave this little ball of awesome to Shay and I. Really, the only control we have is in our reaction to this entire situation and how we choose to view it.
Along the way, and quite likely throughout the entire process, there has been quite a bit of outpouring of support for the three of us. Our loved ones, our friends, our distant acquaintances, and complete strangers have shown us just how giving people can be when presented with the opportunity. There has been an incredible amount of work put into supporting us while we support Jayne in his fight, from baked goods to organizing fundraisers for us. Every little bit has been greatly appreciated. We've also received a fantastic amount of support from the hospital itself. The PCT's, the nurses, the doctors, even the cleaning staff have lent as much support as they could to help us through this. Some of them did this in very personal ways, those of whom had day to day contact with our little unit. The nurses and techs have all been helpful and loving in every way they can. After all, it's hard to meet Jayne and not instantly fall in love with him. The doctors have been tireless in their treatment of the leukemia and everything else that has popped up, from the sporadic fevers to the potential contamination of his line (yet again, he rolled around in his poop; I didn't think he had had that much contact with our dog before going to the hospital). PCH has been instrumental in Jayne's recovery. Their research, methods, and precautions are the reason that he is doing so well and I'm very grateful to every single person in this building for what they've done for my son and what they will continue to do for future sons and daughters of all ages who come through their doors.
Thursday, April 7, 2016
He Was Non-Specific As To How
So, while not everything has righted itself with Jayne's inevitable recovery, there is a bit of light amidst the hazy gray of a hospital in Phoenix.
When Shay and I were ultimately convinced to start up a gofundme, neither of us was entirely sure that we were comfortable with people giving us money, as it were. Sure, we knew that were going to be in the hole after everything was said and done. Sure, we knew that trying to live day to day on hopes, wishes, and faith would be quite laughable. But, still, we were never comfortable with taking money from other people so that we could continue to get by while our baby fights off cancer. Eventually, we gave in and started one with the minimal goal of 5 thousand, a goal that we figured we would never see the fulfillment of for the duration of our stay. We admitted that there might be a chance of overly generous people finding it within their hearts to contribute to our personal disaster.
I never expected the fulfillment of that number to come and, surely, I never suspected that it would happen in the manner in which it did.
As most of you know, there is a certain fighter who is taking a step back and playing Mickey to our Jayne. Sure, he has spent most of his career fighting for himself, honing his craft and making a name for himself. But when the chips are down, when Jayne needed to run up the steps of the Philadelphia Museum of Art, Justin was there to play Eye of the Tiger, guitar and vocals all the way. I don't want to denigrate the efforts that most of you, all of you, have put forth for my little guy, but Justin Gaethje took it to another level.
You've read about the donations he gave to the auction in Pima and those he inspired in the World Series of Fighting. It put a different spotlight on our tiny cancer champion than just that. Most of our audience was family and friends. Our cheerleader squad was composed of aunts and uncles, grandparents and cousins. Today, however, he went above and beyond. He met our five thousand dollar goal. He didn't send us a message, he didn't comment it anywhere that I could find, and he didn't try to self-promote as he did it. But he gave to my son purely for his sake. Maybe he won't say something about it, but I will venture into that territory. Everyone else reading this, stop, right now. The longer you read, the redder his cheeks are going to get (yes, I mean the badass fighter).
Thank you, Justin. You never had a reason to take an interest in my son's struggle other than the fact that your mother, a woman I can heartily identify with because we both love our son very much, mentioned it to you (as far as I know). Despite no prior contact with this little ball of handsome personality, you decided to give it your all towards our family. You managed to attract the attention of your own organization and journalists who wouldn't have given a second though about another baby with leukemia. It isn't cruel because it is reality, there are too many babies, developmentally and in the eyes of their parents, afflicted with this terrible disease.
If your generosity, Justin, can bring the spotlight on this smallest of generations, whether they have cancer, developmental diseases, or even just born without a silver spoon, I say to you "Cheers mate." You have done a great service to my family. To Jayne. To me. You sir, are a wonderful human being, as most of us are but rarely have the balls to actually exhibit. When Jayne is declared cancer free, I would like for you and him to meet. So that he could have the honor of meeting one of the many fighters in his corner and that you
might have the pleasure of meeting the boy they call Jayne.
When Shay and I were ultimately convinced to start up a gofundme, neither of us was entirely sure that we were comfortable with people giving us money, as it were. Sure, we knew that were going to be in the hole after everything was said and done. Sure, we knew that trying to live day to day on hopes, wishes, and faith would be quite laughable. But, still, we were never comfortable with taking money from other people so that we could continue to get by while our baby fights off cancer. Eventually, we gave in and started one with the minimal goal of 5 thousand, a goal that we figured we would never see the fulfillment of for the duration of our stay. We admitted that there might be a chance of overly generous people finding it within their hearts to contribute to our personal disaster.
I never expected the fulfillment of that number to come and, surely, I never suspected that it would happen in the manner in which it did.
As most of you know, there is a certain fighter who is taking a step back and playing Mickey to our Jayne. Sure, he has spent most of his career fighting for himself, honing his craft and making a name for himself. But when the chips are down, when Jayne needed to run up the steps of the Philadelphia Museum of Art, Justin was there to play Eye of the Tiger, guitar and vocals all the way. I don't want to denigrate the efforts that most of you, all of you, have put forth for my little guy, but Justin Gaethje took it to another level.
You've read about the donations he gave to the auction in Pima and those he inspired in the World Series of Fighting. It put a different spotlight on our tiny cancer champion than just that. Most of our audience was family and friends. Our cheerleader squad was composed of aunts and uncles, grandparents and cousins. Today, however, he went above and beyond. He met our five thousand dollar goal. He didn't send us a message, he didn't comment it anywhere that I could find, and he didn't try to self-promote as he did it. But he gave to my son purely for his sake. Maybe he won't say something about it, but I will venture into that territory. Everyone else reading this, stop, right now. The longer you read, the redder his cheeks are going to get (yes, I mean the badass fighter).
Thank you, Justin. You never had a reason to take an interest in my son's struggle other than the fact that your mother, a woman I can heartily identify with because we both love our son very much, mentioned it to you (as far as I know). Despite no prior contact with this little ball of handsome personality, you decided to give it your all towards our family. You managed to attract the attention of your own organization and journalists who wouldn't have given a second though about another baby with leukemia. It isn't cruel because it is reality, there are too many babies, developmentally and in the eyes of their parents, afflicted with this terrible disease.
If your generosity, Justin, can bring the spotlight on this smallest of generations, whether they have cancer, developmental diseases, or even just born without a silver spoon, I say to you "Cheers mate." You have done a great service to my family. To Jayne. To me. You sir, are a wonderful human being, as most of us are but rarely have the balls to actually exhibit. When Jayne is declared cancer free, I would like for you and him to meet. So that he could have the honor of meeting one of the many fighters in his corner and that you
might have the pleasure of meeting the boy they call Jayne.
Wednesday, April 6, 2016
You All Gonna Be Here When I Wake Up?
A few days ago I said that the slow and trudging journey to a functioning immune system had finally begun with Jayne's being fully depleted after this round of chemotherapy had finished. Well today the struggle toward a healthy happy baby has, yet again, truly started to take shape.
When a body is put through the rigors of chemotherapy, it's like a forest undergoing proscribed burns. Sure, there is a specific target in mind when the first fires are lit with the water trolleys encircled and at the ready but you can't tell the fire to target a specific number of trees or to favor pines vs junipers. You can only unleash it and attempt to contain it until it has successfully done what you set out to do. Chemo drugs target cells which tend to replicate rapidly because cancer, as you may have guessed, is a collection of cells which replicate rapidly. Unfortunately it is indiscriminate in its chemical barrage hence the reason cancer patients undergoing chemotherapy also lose their hair and ability to heal easily along with the part of their body which is actively trying to get a disease named after them. There isn't really much anyone can do about that at this juncture. Maybe after a few more decades of intense research, clinical trials, testing, and testing again will a better form of treatment arise.
Jayne spiked a bit of a fever today. He most likely isn't sick, just like the last time he spiked a fever. His body is in the very demanding process of rebuilding those cells which it has lost. He is, in other words, healing. But this will cause him, over the next few days, to run a fever, experience a bit of nausea, and generally feel pretty crappy. As they say, you've got to break a few eggs to make an omelette. Of course, they never mention the cow that you have to milk for the cheese, the pig you have to kill for the bacon, nor the horse whose dung you will have to filch to grow the mushrooms. And, not to nitpick on colloquialisms, but they also never even bring a bowl into the equation. So really, it should just say, "You've got to break a few eggs to make a mess." Which, on the face of it, isn't entirely without merit, especially in our given situation.
Jayne, as one can imagine, is not happy with this situation. He's transformed from the cheery, happy, squawking baby that he usually is to a loud, grumpy bald fellow with a chip on his shoulder and a severe desire for your life to be all about him. Rupert Murdoch, he is slowly becoming Rupert Murdoch. Thankfully, this window into what other peoples' lives are like when munchkins invade their happy marriage/life will only be open long enough for the pies to cool and then it's on to our just desserts. We can't do much to help him, other than guess which part of his body is hurting him more, what is keeping him awake, and generally try and address his need for snuggling. The last part is not very difficult, which you might understand, if you've ever held the wee lad.
All we have left to us is really the same thing that we have had throughout this entire predicament: trust.
We brought him to one of the most capable facilities that we could ever find with some of the most experienced, competent, and caring personnel we could ask for. Biology and medical science have come a long way due to the diligence of people like the ones we deal with on a daily basis and others we would have no reason to be in contact with. The amount of research that has gone into effectively treating cancer, and all of the side effects of that treatments, truly shows when you look at the rates of survival over the past few decades. The years of peoples' lives that have gone into saving this one baby, among millions and millions of others diagnosed with cancer, is really something to give you pause. These people, the people who devote themselves tirelessly to, essentially, keeping families whole and saving lives, are heroes. They've earned my respect because Jayne will get to grow up to be a (fairly) normal child, doing things that he, otherwise, has no right to do. Sure, he's miserable now but, let's face it, in a few years he will be a teenager and then he'll always be miserable. At least now he's actually doing something, kicking cancer's ass and stealing nurse's hearts.
Now for something completely different.
As most of you are aware, if you aren't trapped in a time vortex disguised as a children's hospital, it is April. Time sure does fly when it's strapped to a bird. Not only is tax season but it is rapidly approaching what we in the know like to call Jayne's Day. If you're not entirely sure when or what this is, come, follow me and let me show you. Or tell you, at least; I could never draw very well and one stick figure looks pretty much like another. Jayne's Day, as it has been dubbed, is on June 11th for no other reason than mere happenstance. This is the date for the Super Hero Mayhem in Pima, brought to us by the fantastic Cherla Ramsey, and the concert to benefit Jayne and Skye in Show Low, largely coordinated by Kristen Denbow and facilitated a bit by my very good friend, Burt Bradford. I have very little details on these two events, one of them has an event page on Facebook (Mayhem), the other is being hammered out furiously, akin to those plastic gophers infesting boardwalks and arcades everywhere. If you are in either of these areas and would like to help or attend either, feel free to get in touch with either of them and offer your time, your ideas, your heckling and cajoling, if you're so inclined. I will try to keep you up to date as soon as I am.
Also, last time we were out of the hospital, we were visited by Anthony and Bryna McCormack, who are renowned and celebrated for their culinary and hospitality acumen. They told Shay and I, after much cuddling and exclaiming over our handsome boy, that they had been talking to their rep with Shamrock Foods and that they would like to donate foodstuffs to our little family unit. This, as can be expected, floored the two of us with its unsolicited generosity. It just goes to show how amazingly selfless and charitable people can be without promise of recompense, in any form. I would like to thank the above named for their tireless support for the three of us, along with all of you. Yes, you. Even you, in the back there. You guys have made is bearable living with this disease, watching our little guy suffer through something so terrible even adults balk at the idea of it. I realize that everyone has their own way of looking at things, including said moral support. While I may not agree with everyone's perceived method, I do appreciate each and every one of you for the simple reason that I love my son very much. He's probably the greatest thing I have every contributed to this world and it warms my heart, cold as it is, when I think on just how many people have come to fall in love with this small boy with the big brown eyes and charming, toothless smile.
One day I will tell him of all the heroes that came to his aid, who watched him in, what should have been, his darkest hour grow and despite it, live and laugh. These heroes who didn't give up on him because he gave them strength by being strong himself. These heroes who were just people showing support for a baby with leukemia because, deep down, regardless of belief, color, or creed, people love to love. No matter whether they want to admit it to themselves or not. And, hopefully, he will love that.
When a body is put through the rigors of chemotherapy, it's like a forest undergoing proscribed burns. Sure, there is a specific target in mind when the first fires are lit with the water trolleys encircled and at the ready but you can't tell the fire to target a specific number of trees or to favor pines vs junipers. You can only unleash it and attempt to contain it until it has successfully done what you set out to do. Chemo drugs target cells which tend to replicate rapidly because cancer, as you may have guessed, is a collection of cells which replicate rapidly. Unfortunately it is indiscriminate in its chemical barrage hence the reason cancer patients undergoing chemotherapy also lose their hair and ability to heal easily along with the part of their body which is actively trying to get a disease named after them. There isn't really much anyone can do about that at this juncture. Maybe after a few more decades of intense research, clinical trials, testing, and testing again will a better form of treatment arise.
Jayne spiked a bit of a fever today. He most likely isn't sick, just like the last time he spiked a fever. His body is in the very demanding process of rebuilding those cells which it has lost. He is, in other words, healing. But this will cause him, over the next few days, to run a fever, experience a bit of nausea, and generally feel pretty crappy. As they say, you've got to break a few eggs to make an omelette. Of course, they never mention the cow that you have to milk for the cheese, the pig you have to kill for the bacon, nor the horse whose dung you will have to filch to grow the mushrooms. And, not to nitpick on colloquialisms, but they also never even bring a bowl into the equation. So really, it should just say, "You've got to break a few eggs to make a mess." Which, on the face of it, isn't entirely without merit, especially in our given situation.
Jayne, as one can imagine, is not happy with this situation. He's transformed from the cheery, happy, squawking baby that he usually is to a loud, grumpy bald fellow with a chip on his shoulder and a severe desire for your life to be all about him. Rupert Murdoch, he is slowly becoming Rupert Murdoch. Thankfully, this window into what other peoples' lives are like when munchkins invade their happy marriage/life will only be open long enough for the pies to cool and then it's on to our just desserts. We can't do much to help him, other than guess which part of his body is hurting him more, what is keeping him awake, and generally try and address his need for snuggling. The last part is not very difficult, which you might understand, if you've ever held the wee lad.
All we have left to us is really the same thing that we have had throughout this entire predicament: trust.
We brought him to one of the most capable facilities that we could ever find with some of the most experienced, competent, and caring personnel we could ask for. Biology and medical science have come a long way due to the diligence of people like the ones we deal with on a daily basis and others we would have no reason to be in contact with. The amount of research that has gone into effectively treating cancer, and all of the side effects of that treatments, truly shows when you look at the rates of survival over the past few decades. The years of peoples' lives that have gone into saving this one baby, among millions and millions of others diagnosed with cancer, is really something to give you pause. These people, the people who devote themselves tirelessly to, essentially, keeping families whole and saving lives, are heroes. They've earned my respect because Jayne will get to grow up to be a (fairly) normal child, doing things that he, otherwise, has no right to do. Sure, he's miserable now but, let's face it, in a few years he will be a teenager and then he'll always be miserable. At least now he's actually doing something, kicking cancer's ass and stealing nurse's hearts.
Now for something completely different.
As most of you are aware, if you aren't trapped in a time vortex disguised as a children's hospital, it is April. Time sure does fly when it's strapped to a bird. Not only is tax season but it is rapidly approaching what we in the know like to call Jayne's Day. If you're not entirely sure when or what this is, come, follow me and let me show you. Or tell you, at least; I could never draw very well and one stick figure looks pretty much like another. Jayne's Day, as it has been dubbed, is on June 11th for no other reason than mere happenstance. This is the date for the Super Hero Mayhem in Pima, brought to us by the fantastic Cherla Ramsey, and the concert to benefit Jayne and Skye in Show Low, largely coordinated by Kristen Denbow and facilitated a bit by my very good friend, Burt Bradford. I have very little details on these two events, one of them has an event page on Facebook (Mayhem), the other is being hammered out furiously, akin to those plastic gophers infesting boardwalks and arcades everywhere. If you are in either of these areas and would like to help or attend either, feel free to get in touch with either of them and offer your time, your ideas, your heckling and cajoling, if you're so inclined. I will try to keep you up to date as soon as I am.
Also, last time we were out of the hospital, we were visited by Anthony and Bryna McCormack, who are renowned and celebrated for their culinary and hospitality acumen. They told Shay and I, after much cuddling and exclaiming over our handsome boy, that they had been talking to their rep with Shamrock Foods and that they would like to donate foodstuffs to our little family unit. This, as can be expected, floored the two of us with its unsolicited generosity. It just goes to show how amazingly selfless and charitable people can be without promise of recompense, in any form. I would like to thank the above named for their tireless support for the three of us, along with all of you. Yes, you. Even you, in the back there. You guys have made is bearable living with this disease, watching our little guy suffer through something so terrible even adults balk at the idea of it. I realize that everyone has their own way of looking at things, including said moral support. While I may not agree with everyone's perceived method, I do appreciate each and every one of you for the simple reason that I love my son very much. He's probably the greatest thing I have every contributed to this world and it warms my heart, cold as it is, when I think on just how many people have come to fall in love with this small boy with the big brown eyes and charming, toothless smile.
One day I will tell him of all the heroes that came to his aid, who watched him in, what should have been, his darkest hour grow and despite it, live and laugh. These heroes who didn't give up on him because he gave them strength by being strong himself. These heroes who were just people showing support for a baby with leukemia because, deep down, regardless of belief, color, or creed, people love to love. No matter whether they want to admit it to themselves or not. And, hopefully, he will love that.
Sunday, April 3, 2016
This Place Gives Me An Uncomfortableness
Today is the day that we were waiting for. Jayne finished his chemo four days ago and since then it has been quite the tedious wait for his ANC to drop to zero. Only after that can it start to recover, finally releasing him from his bounds. Now that it is, in fact, fully depleted, we can expect to be out of the hospital in a short time. Well, relatively short, like how a baseball game compares to speed chess. Along with his neutrophils, his platelets and hemoglobin has also dipped significantly. He will most likely need to get to some more platelets either today or tomorrow, possibly a blood transfusion in the next few days. A larger issue has come in to sharp focus with his anemia, one that keeps Shay and I acting uncharacteristically helicopterish with He Who Shall Be Cured.
As most of you might now, Jayne is a standing fiend. He is becoming quite adept at all manners of mobility save walking, running, wheelchairs, driving a car, flying a plane, and whatever it is that middle-aged women do on the streets of every town in America. His crawling has improved greatly just over the last few days and he is now starting to sidle along the side of his crib, furiously tasting each few inches, savoring each delectable flavor he finds. It's the sidling that has given us cause for concern, however. As part of his leukemia, he is anemic, hence the reason that he needs transfusions so often. Because of this fact he is very capable of causing internal bleeding within his skull. A capability he has taken to with much gusto, relishing in watching us squirm, as he grips the top of his crib and proceeds to see just how close he can get his head to whacking it. He did that very thing yesterday, though not as hard as he could have, and now has a decent bruise on his forehead.
This squeamishness to watching Jayne act accordingly for his age range is quite difficult for the two of us to experience. He's a baby learning to crawl and develop his leg muscles, he should be hoovering the floor as he scoots across it. He should have a chance to figure out not practice for the World Cup with his crib rail. He wants to put new and interesting things in his mouth? Sure, that's how he learns about the world and develops an immune system. But we can't let him be a kid and he can't possibly understand why we keep taking things away from him, confining him to very small areas that we know to be clean, and, even then, we are quick to swoop in and snatch him up. He is in a quantum state, Schrodinger's Cancer Kid, at once both very strong and quite vulnerable. It's not a line that is expected to be easy except hypochondriacs or unconscious perpetrators of Munchausen by proxy.
It's one of the many clear instances that illustrate just how different the next few years will be for the three of us than what was initially expected when we were expecting. Despite that, however, we are determined to not let it stop be a child as much as he can. We can't let him really play with too many other children until we are able to get him updated on his vaccinations, which won't happen until he's about a year out from when he's cleared. But there's plenty more that he can expect to do that we will do our damnedest to facilitate. Walking with reckless abandon, eating dirt (very occasionally), learning to ride a bike, playing with his dog outside (if we ever get a real dog). These, and so much more, are all bridges we will have to cross together but the reality that we both have come to accept is that he is not a porcelain doll, despite how pale he is. We're beating cancer know and so we can deal with anything else that arises on his path to becoming a fully fleshed out human being. This time in his life will not define him, though he may use it once or twice to get laid.
Saturday, March 26, 2016
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.
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