The Elephant

Well, Vampboys ANC shot up to normal practically overnight early in the week -- enough for him to start treatment on Tuesday. Sadly, not expecting this to happen, he received his "G" shot on Monday (which, turns out, he didn't really need). This delayed him until Friday, because you can't start chemotherapy until 48 hours after your last shot. Scrubs said Vampboy was "f$%^ing with her". Perhaps -- needless to say, Vampboy's playmates should be on notice now that the first weekend in June, 2018, Vampboy is grounded.

This delay also means that "hospital duty" falls to me for the first half of his stay, as I do weekend duty so Vampmommy can have some time to unwind. Emotionally gearing up for another round in the hospital is no fun -- particularly since the schedule has been such that this will be my first stint in Chez Healing since November. Grudginly, I am beginning to prepare for the transition.

I have been thinking a bit about transition this week, as I continue to navigate operating in two worlds. My first world is the "normal" one, where I go to work every day, and enjoy usual "dad things" like play time and bath time. Where I read and follow parenting blogs, websites and magazines that tackle the joyfully routine topics of toilet training, and ensuring that your child's food ends up going from plate-to-mouth, instead of plate-to-table-to-dog's-mouth.

Then there's "C-Camp", where you inject medicine through a tube in your son's stomach, and try to translate his current condition into something that someone not in C-Camp can understand. This week has brought many to at least take a brief tour of C-Camp, after two prominent people were splashed across the news for their cancer story. First there was Elizabeth Edwards, whose breast cancer has returned and spread to her rib. Then White House Speaker Tony Snow announced the return of his colon cancer, setting off a great deal of media attention on the disease.

In the sea of blogs, articles and opinions on the issue, one that stood out to me was by Leroy Seivers, a reporter for National Public Radio who has been blogging about his own experience battling cancer. His response to Elizabeth Edwards announcement talked a great deal about "the elephant". You know, the one that is sitting in the living room, eating your cookies and tivo-ing over episodes of Grey's Anatomy with re-runs of Emergency Vets?

Yes, that elephant in all of our living rooms: death.

Edward's cancer is incurable, but treatable. While treatment can extend her life, the reality is that cancer will eventually take it. She knows this, but is unwilling to allow her cancer to define her. So, with this knowledge and her desire to be more than her disease, she and her husband bravely press on with his campaign. People have applauded her courage. Some have expressed surprise that they choose to continue in the political fray. Through it all they have been poised, and models of bravery in the face of disease. They have taken the elephant in their living room, and told it to eat some peanuts and take a hike.

All of us who are impacted by cancer need to deal at some point with the inevitable meaning as it relates to existance. While Vampboy is doing well, it is never far from my thoughts that his disease may take him -- maybe not today, but perhaps 5, 10 or 15 years from now. Or, maybe next week. Sure, there is a chance and a hope that it may not -- but do a google search on AT/RT and I'm sure it will only take a few links to connect you with the scenario most often faced by parents of kids with this form of cancer.

So, with that much unknown, how do you navigate "Normalland"? How do you move forward on your other goals and dreams in life, even in the face of an obstacle as big as this? And, how do you balance normal life with the desire to throw breakable things in anger at life in C-Camp?

I am amazed at the people I meet and read about, who faced their cancer and forced it into a corner. Those who refer to themselves as "Survivors", counting up the days from diagnosis, with every added second perceived as a victory. I'm just not there yet.

How much to you celebrate victory in battle, when the loss of the war is still at the table?

Calling Mulder and Scully

Blood is a complicated thing. It carries more than oxygen -- white cells, red cells, platelets. And, when you apply the complex math of the medical world, something called "Absolute Neutrofil Count" or "ANC". This handy number is what determines whether or not Vampboy can play with his friends, or whether he needs to live in a figurative bubble to shield him from nasty bugs.

Normally, when a cancer patient receives chemotherapy, their ANC drops down into the depths. Then, with the help of a daily shot called GCSF, the count slowly rises back to normal.

Remember, I said "normally". For the second time in Vampboy's treatment, his ANC has dropped when it shouldn't -- at the end of his cycle, even when he's still taking his GCSF. To be clear, this isn't supposed to happen. So, we are once again scratching our heads saying, "what the hell". What doesn't help is that the Doctors tend to say the same thing on this one.

So Vampboy is delayed in his treatment while we wait for something to change, and his counts to rise again. I'm not sure how long that will take, but it'll probably be Friday at the earliest (he was supposed to start his next chemo round this past Friday). At least, we hope it will be Friday.

More mystery....

Vamp O'Daddy

Happy St. Patrick's day, one and all! The Vampfamily is getting a little down time today, with Vampboy heading to the grandparent's, Vampmommy taking in a bit of quality time with a friend, and my plans to sit in Barnes and Noble and chew through a good book. I also plan to stop by my office for a bit, so I can watch the hordes of drunkards spill out onto the street from the local Irish-style pub that is across the way. Given that I do drug and alcohol prevention for work, it's helpful to witness first-hand the sad display of my job security.

No real news on the "Vampboy Cancer Front" -- we're in a holding pattern to start his next chemo round until his counts rise. We're hoping for next Friday, but that remains to be seen. It also does not help to have the local medical lab send incorrect lab results to Vampboy's doctors, which they did this week. While it's not amputating the wrong leg, it certainly could have put him at risk with his low immune system. We have seen any number examples of mistakes in Vampboy's care, but I'm fortunate to have a wife who hovers like a hawk over it's prey, ready to pounce on the first Resident that so much as blinks incorrectly.

So while we wait, Vampboy continues to obsessively clean the house with his toy vacuum and broom. While I know he will have any number of issues related to his cancer as he grows, I am now wondering if we have a little OCD patient on our hands. Fortunately, his need to keep things tidy doesn't translate to putting his toys away yet, so I have some sense that perhaps it's just a passing fad. However, if it means that there isn't dog-hair tumbleweed floating across the living room floor, so be it.

Journey Out of Nowhere

It's been a little quiet since Vampboy's birthday around these parts. The daily trips for radiation therapy blur together the days and weeks, and suddenly all this time has past and I'm wondering what happened to it.

But, tomorrow will be a big day in the Vamp-house, as we travel into Boston for one last radiation dose. Afterwards, we "pick up where we left off" in the course of Vampboy's treatment schedule -- back into a less stressful schedule of lighter chemo doses, every three weeks, until the whole thing ends some time in September/October. Of course, it will still be a rough road, but compared to the first half of his treatment it almost feels like a vacation.

We've lucked out during the past 6 weeks on two factors that have kept Vampmommy and I from pulling our hair out. First, for some reason that will go into the "Yet Another Vampboy Mystery" category, the radiation and coinciding chemotherapy didn't knock out little guy down for the count like we thought. Granted, keeping him entertained daily is no easy task, but it can be seen as a better challenge than cleaning up gallons of vomit and dealing with a kid hopped up on morphine to manage pain.

The second thing is the team of "Vamp Helpers" that put in time to travel with Vampmommy and Boy to Boston every day, 5 days a week, for the past 6 weeks. Not only did this provide a valuable set of extra hands, but it opened up Vampboy to a world of wonderful people, some of whom he hadn't really gotten to know. It aslo allowed me to continue to "bring home the bacon" -- which is helpful on both the literal and figurative levels.

Strangely, the next 24 weeks (or so) will have its own unique challenges.Vampboy will hopefully continue to tolerate treatment, meaning that he can continue to catch up on some of his developmental delays caused by being in a morphine and fever-induced stupor for the past several months. But it also means that our little guy will return to a state of apparent boundless toddler-energy, but on many days not have the immune system that would allow us to send him to school, or out to play with friends. And, while he is curently obsessed with the new toy Dyson, I can't imagine that his quest for excellence in the custodial arts will continue to keep him enthralled. As sucky as this whole experience has been (and still is), the daily grind of appointments, treatments, illnesses, fevers and the like, have all replaced his time in daycare...How will he be without either?

For that matter, how will we be? I have my job to keep me occupied sometimes (that whole bacon thing again), but Vampmommy is full-time Cancer Warrior. We're already tired from the daily grind, but at least the daily trips into Boston were something "to do". This is complicated by our commitment to not allow Vampboy to watch TV until he's 3 (if then) -- there's no "babysitter in a box" in this house.

I guess we'll continue to benefit from the friends and family that have come to share time and energy over the past few weeks, and try as much as possible to keep Vampboy engaged in fun activities...We've got lots of time, so feel free to share your favorite!