Best Week of the Week

Well, Vampboy and I made it back from Chez Healing last night. Although it had the usual challenges, I have to say that life in the hospital is a different beast during the week than on the weekend, when I'm usually on duty.

For starters, the hospital is a noisier place during the week. Every bed has a patient in it, and Residents run around diligently after their respective Attendings and Fellows. The play room is staffed with Child Life Specialists, giving Vampboy ample opportunity to search for them through the halls. At one point members of the New England Revolution (league soccer team) came to visit, and all VB could do was try to coax the Specialist back to the play room with him.

Then their are those who VB truly considers to be Gods and Goddesses among us: the cleaning crew. Given my son's propensity for ceaseless vacuuming and sweeping, he spent countless hours watching with glee as the floors were buffed and trashcans were emptied. His favorite is a lovely women who always turns their encounter into a laugh-fest, speaking in a high pitched voice while dancing around the hallway, flapping rubber gloves and smocks in the air.

Lastly, there was the "snack train", which wheeled through the halls bringing patients -- and their parents -- a choice of cheesecake brownies or fruit and cheese.

What luxury! On the weekends, you're luck to get an ice cream cup from the patient and family kitchen. The play room is available but unstaffed, so it's a bit more quiet. All in all, I'd rather be there during the week than on the weekend -- but hopeful that soon we won't need to be there at all.

Steady Off

Well, how quickly things change.

For the first time in months, Vampboy is in the hospital with an infection. This followed two days of challenging blood product transfusions, and a bleeding episode that left him looking as though he'd been shot in the chest. On top of this, VB has been indicating that his tummy hurts since yesterday, and by today it was clear that the area around his Mic-key button was infected. This is a common thing, sadly -- in fact, he had a similar reaction when his initial tube was put in back in October. Unfortunately, because it's happening while his immune counts are low, it's back to Chez Healing for a few days.

Complicating things this time around is that Vampmommy has a cold -- so the hospital is the last place that she should be. So, after some schedule wrangling and work off-loading, here I am.

Peachy. September (or October...Or....) won't come soon enough.

Steady On

I wish I could say that my lack of a post in many days is a result of a life unaffected by "stuff". Really, all I want is for the day to come where someone says, "Hey, have you heard from Vampdaddy lately?" To which the responder says, "Yeah...But not much is going on in his world."

Ah, dare to dream. In the meantime....

So...Buttons
The button is in, and it doesn't look at all like a mouse. It looks more like this:

The top part is what sits on Vampboy's tummy -- while the long tube with the balloon in it is the internal part. There is a separate tube that locks into the button when it's time to use, and I have to say it's a great thing to see him running around without a long chord permanently wrapped and taped around his stomach.

Mama.
Mother's day has come and gone, without me giving a shout to the mommy-bloggers who have been added to my blogging world. Here at the lair, Mother's Day was spent in the hospital for the next Chemo Round, and I was without a computer for most of it. To pass the time, Vampboy and I made it a project to decorate the room with streamers and signs, and Vampmommy came back to Chez Healing on Sunday for a family party. Once again the unpleasantness of the hospital environment was forgotten, thanks to good company and a healthy dose of dinner from the Cheesecake Factory (apparently they make more than cheesecake).

Oh, and if anyone thinks otherwise, yes -- my son does have the best mom on the planet.

The Dolls
Vampmommy and I were never interested in applying to our child the typical stereotypes and straightjackets of gender. Even though VM was convinced we'd have a boy, we didn't know for sure until he entered the world with a scream (both hers and his). This left us with a cache of gender neutral clothing and toys, and we made a pact not to participate in the typical expectations of boyhood (no sports-related clothing, etc). Of course, our son grew to love trains and trucks anyway - but that has been balanced now with a baby doll. He found it in the playroom at Chez Healing and became completely enamored with it. For two days he'd carry it around with him, and even refused to go to bed unless he could sleep with it. In the morning, he'd change it's diaper and clothes, and tried to convince it that Chex really were worth eating.

After realizing that we'd be facing a major traumatic incident when it came time to put the doll back in the playroom, I had VM bring a new doll with her when she returned to the hospital. Baby wears a yellow and duck-print pajama set, with matching booties and hat. Vampboy continues to be smitten by his little offspring, and starts each morning by asking to locate "baby". We aren't sure whether it's a boy or a girl, but I'm not sure that really matters.

"I uv u"
Vampboy said those words to me, without my prompting, about a week ago. It's one thing to love your child, but it's something else entirely when they actively reciprocate. Tremendous.

Time -- It's all a Question of Time
It seems, after sitting down with a calendar and the treatment protocol, that as of now we are actually scheduled to end treatment in September. Granted, delays are still possible, but seeing the end on the horizon is hard to believe -- like much of this experience, I suppose.

Biking Home
A relative of ours (my brother-in-law's wife's father...Got that?) is riding in the Pan Mass Challenge. This is a 100+ mile bike ride that raises funds for Dana Farber Cancer Institute, where Vampboy is being treated. Our little one has been selected as a "pedal partner" for my relative's team. We got to meet the entire team a couple of weeks ago, and they presented him with this toy ramp that he is absolutely obsessed with.

My relative and his fellow riders are hoping to raise over $6,000 for Dana Farber. If you'd like to contribute, you can click here. Pick any of the "One rider" options (the donation is made through the team captain).

Treasure Hunt
I've had several folks comment that they can't find us on the Cancer Collage. Trust me, we're there! In fact, I just checked it, and on my browser at least our photo and card is on the main page when it's opened. Just search for "Vampdaddy" and look for the little illuminated photo. Good luck!

Sideshow

"I like blue".

This was the first complete sentence spoken by Vampboy, which took place last week during some fierce artistic expression. This was followed a few days later by "I like bear", referring to any one of the arsenal of teddy bears he carries with him constantly. I'm not quite sure if he understood what he was saying, but he clearly got from our squeals of parental glee that he did something right.

We're waiting for today's lab results, which will give us a sense of whether or not this weekend will bring another stay in Chez Healing for chemotherapy. Although the idea of celebrating mother's day on "the floor" is a bit of a downer, the idea of a delay brings it's own frustration. Plus, this stay will introduce a new player in the treatment arsenal. Sing it with me, everyone:

M-I-C-K-E-Y

B-U-T-T-O-N!

Since November, Vampboy has had a tube sticking out of his stomach, through which medications (and more importantly, food) can travel. Looking back, we really credit the insertion of this for the bounce-back we've experienced from our days with him looking like a ghost. Sadly, we've also become big fans of the ease it brings to some of the typical headaches parents with toddlers deal with. Your child refusing to take tylenol? No worries -- just squirt it down the tube and you're done! The young one resisting eating his veggies? Forget about it -- a little liquid nutritional supliment down the tube and their daily requirement is met!

Before you rush to your pediatrician for the quick-fix, there are some draw-backs. Obviously, a tube hanging out of your child's stomach like a replacement umbilical chord can be a little tough to look at. Plus, it needs to be taped, tucked into clothing, and otherwise handled to ensure that it doesn't get "forcibly removed" by mistake. Trust me -- we almost had that happen once, and it's not something you'd want your child to go through.

Now comes the "Mickey Button". After a few months with the tube, it's replaced with a button that sits flat against the child's stomach. No more tube to manage. This leaves me looking forward to this weekend, yet at the same time remembering how sad it is that I am looking forward to something like this.

In other news, last night the Discovery Channel had a special on cancer. As part of the documentary, a " Cancer Collage" has been developed on-line to bring attention to the disease. You can find it here, and if you do a search for "Vampdaddy" and scan around you'll find a card about us -- along with some photos of Vampboy and I. While you're there, take a look around -- sadly, you might see someone else you know.

I Will...

Vampboy is mid-way through his current cycle, and although it's been a bit harder than the previous ones (with some slight nausea early on and more blood and platelet transfusions) he seems to be holding his own. I still can't believe how radically different it is from the constant barrage of misery that was in earlier cycles.

The lack of daily drama has given me more time to think, and lately I have been thinking of "survivorship". This is the term coined for the growing ranks of cancer patients who actually make it -- as cancer survival rates increase, the "establishment" has begun to focus attention beyond the treatment. Cancers that were once a death sentence are now considered "chronic diseases to be managed", much like HIV (for those lucky enough to have access to medical care and affordable drugs, anyway).

Of course, Vampboy's cancer does not fall in the "chronic" category. AT/RT is still one of those cancer's that kills people. Yet, as we are well on our way with maintenance chemotherapy, his tolerance of the treatment has given us a chance to consider that he may (and I stress, may) live to be 100. Or, he may only live to be 10 -- but either way, he could very well make it beyond the end of treatment; and that end is on the horizon.

Don't get me wrong -- I still contain uncontrollable rage at the life we lost, past and future. However, when you lose everything, the clean slate that is left provides a unique opportunity to start again. Many cancer patients make course corrections as part of the "new normal". Perhaps they change jobs, move, or re-prioritize other activities and relationships in their lives. Toddlers don't have complex realities that offer that kind of opportunity, but certainly Vampmommy and I have begun thinking about it. In our case, "survivorship" is a family issue. What kind of a family do we want to be? Should Vampmommy go back to work when this is over? Should we adopt like we planned before Vampboy got sick, or just expand our ranks with additional pets? And, whatever choices we make, how much do we consider Vampboy's cancer (and its potential return) in making them?

In the immediate moment, Vampboy's reactions to his current treatments also allow for Vampmommy and I to turn some attention to our own self-care. Parents everywhere tend to struggle with this part, but when you're the caregiver of a child who has additional needs the very thought of keeping yourself healthy tends to get thrown out the window. So we're eating better, trying to exercise, and working to stave off the effects of six months of comfort and hospital food.

Hell has become a bit more comfortable. The storm around us has slowed, and I hear for the first time a little quiet, and open space to let the possibility of a future in.

Is That all There Is?

Vampboy's MRI scans came back with "no evidence of disease" yesterday. So, for today, we can rest a bit easier knowing that we've bitch-slapped cancer into the corner.

Sadly it is short-lived, as we know that the fact there is a corner that cancer can run to means we aren't out of the woods yet. The question is -- will we ever be? One of the first patients with AT/RT treated with this protocal has died, after relapsing 5 years after treatment. While others have survived beyond that, there aren't enough to capture the "survival rate". One cancer cell is all it takes to go from a cure to "buying time before the inevitable".

Time is the big question -- but we were given a little more today. We'll take it.

Digging in the Dirt

Spring has finally sprung here at the Vamphouse -- a refreshing change after two April snow storms and the "Great April Floods" that seems have become a staple of life in this part of the world. The last remnants of snow have vanished, and Vampboy's snowsuit has been replaced near the door by a beach shovel, bucket and plastic rake, which he just picked up to take outside. A future landscape architect, no doubt.

Vampboy has started his week 30 chemotherapy, and the good news is that the nature of the treatment this time made it such that we could do it outpatient as opposed to staying in Chez Healing for four or five days. While the idea of spending each night in our own bed has made the experience worthwhile, the daily tribs into Boston for treatment have made for some long days. While in Chez Healing today, we had the benefit of visiting with Othergirl, who was in for her week 33 treatment, and Princess, who was in with pneumonia (but feeling better by the time we got there). This was the first time that all three were in the hospital at the same time in months, and even though our visit was only a couple of hours long it was great to watch the three interact with one another. At one point, Vampboy proudly lead the three of them (and the respective parents) around the floor in a parade, wildly waving a sparkly baton and laughing. A little "Cancer Pride Parade".

This will be a big week, because apart from the chemotherapy treatment it's MRI time again. While even the doctor's don't expect to see anything, the nastiness that is AT/RT keeps everyone on their toes and concerned as the MRI approaches. On top of that, we are far enough out from radiation therapy that Vampboy will have his final hearing test, so we can get a sense of how much hearing loss we'll be dealing with. When interacting with him we don't notice much, but in his speech patterns he's clearly missing his "s" and "f", which are higher frequency letters to pronounce. The test should give us a pretty clear indicator of what the damage will mean, and how soon he'll need a hearing aide (we're pretty sure one is definitely in order for his right ear at some point).

Then on Wednesday we visit "Brain Tumor Clinic". This is a new part of our routine -- a one day extravaganza starring all of the kids treated for brain tumors (past and present) as well as the team of specialists that work with them. This is the place Vampboy will go for follow-up appointments once his treatment ends, but having never been before we're going to get a taste of it this week.

I remember when "big weeks" involved vacations, or something fun. Ah, the good old days....

Before I sign off to check that Vampboy hasn't dug a hole in the garden, I did want to post a special thanks to the folks that came out to the fundraiser that was held this afternoon on Vampboy's behalf. He was perky enough after his treatment that we got to stop by, and I think he was quite taken with the live music and space to run around in. Friends and total strangers came out, and we are once again amazed at people's caring.

Update -- some kind and wonderful folks out there have emailed me since last night about how they can contribute to the fundraiser. Being the recipient of such generosity is an odd experience, hence I rarely mention it here. However, to honor peoples' wish to help out, I will say that there remains a fund that was created to support expenses related to Vampboy's treatment. To get information on how you can donate, please email jackiecdp@aol.com with "Vampboy Fund" in the subject line.