Saturday, December 10, 2005
WHEN I GROW UP, I WANT TO BE…………..
Photo taken December 2005; Only FIVE days of treatment left!!! Wahooooooooooo!!
5 Days to GO!
All parents have dreams for their children and what they should be when they grow up …. Doctor, lawyer, ballerina, etc. Sure, Blaine and I would love to raise tri-lingual neurosurgeons who walk on the moon and summit Mount Everest ….. but realistically, as long as they stay out of jail, we’ll be pretty happy.
Our kids, of course, have dreams of their own. Currently, Kellen wants to be a “Spy Agent”, Kendrie wants to be a doctor, and Brayden wants to be (shrug) “I don’t know.”
There are a few limitations placed on Kendrie, however, due to her leukemia diagnosis and subsequent chemo treatment. Blaine and I were discussing the career options that are no longer available to her, and thought we would share them with all of you, The Top Five Careers That Are Off-Limits to Kendrie: (and in a few minutes, the Top Five Surprises at her Final Clinic Visit)
1. Professional Basketball Player. It’s a medical fact that chemo can stunt a child’s overall growth, and there’s very little chance of hanging on the rim for some sweet air time if you’re not much above five feet when you grow up. Sure, we could blame Kendrie’s genetic vertical challenge on her paternal grandmother who only stood 4”11, but it’s much more satisfying to blame the chemo. Either way you look at it, I don’t think the WNBA is in her future.
2. Professional Baseball Player. As many steroids as we’ve pumped into her system these past two years, her drug screen would light up like Barry Bonds disguised as a Christmas tree. No way she’d pass THAT test!
3. Nuclear Radiographic Laboratory Technician. I’m not exactly sure what it is these people do, but considering Kendrie is already at increased risk for secondary cancers, I don’t think working at Three Mile Island is really a good choice for her.
4. Professional Blood Donor. OK, so maybe no-one actually makes a *living* doing this, even the people who donate platelets for money. But since there is (currently) a lifetime ban against Kendrie, or any blood cancer patient, ever donating blood, I don’t see a ten-gallon pin in her future. It’s a shame, too, because they give out great juice and cookies at those places.
5. Crack Addict. Obviously, not the career choice of a proud mom and dad …. But isn’t it good to know that as many times as she has been poked and prodded already, she is statistically less likely to abuse drugs and alcohol later? I mean, hey, who wants to voluntarily jab themselves with a needle when someone else has been doing it for you the past twenty-six months???
And there you have it …. Career paths Kendrie will most likely NOT take!
I wanted to share with you a few photos from her last clinic visit yesterday. It was such a profound, exciting, emotional day! Final IV Chemo!!!
We started the day by meeting friends for celebratory lunch at the Fuddruckers near the hospital, Mary Grace and her mom and dad, and Katie, one of our wonderful Camp Sunshine counselors (and a twenty-year Ewing’s Sarcoma survivor!!!) Kristin, we’re so sorry you couldn’t make it and hope your pup is doing well!
Then, over to the clinic, where I practically wore a sandwich board strapped around my body and a neon sign glued to my forehead, announcing to any and everyone who would listen that this was her last day of chemo!!! I told the receptionist, the triage nurse, other parents in the waiting room, the medical sales rep who walked by, the parking garage attendant, and the guy who works in the deli downstairs.
Since this was the last time, Kendrie and I discussed beforehand how nice it would be if just once, just this one single time, she could allow the nurse to access her port without sitting in my lap and crying the whole time. She agreed it would be wonderful. In theory. Then she climbed in my lap and started whining.
But once she was accessed, she did agree that she’d like to flush the line herself, since this would be her last chance to do it. (Did I mention this would be the last time her port was accessed????)
"Kendrie, flushing her port before getting chemo"
The nurse drew blood for her counts, then injected her with vincristine …. Then un-accessed her, and viola! It was over!!!
"Look at me!!! No more pokes in my chest! I DID IT!!!"
I had a nice conversation with her oncologist, while he was examining her, about what life entails for us now, and how things change, and things to watch out for. During this conversation, I actually got a few surprises (not coincidentally, to go along with today's list, FIVE surprises!):
Surprise #1. Kendrie has osteoporosis (soft, weak bones.) Not unexpected, this happens to most kids after chemo. The doctor says with a healthy diet and exercise, it should reverse itself over time. But watch out for increased risk of broken bones in the meantime.
Surprise #2. Her taste buds might be permanently altered. Not only has she not voluntarily eaten a green vegetable at any point in the last twenty-six months …. But she might never want to again. Some kids return to a normal diet, some don’t. We’ll have to wait and see.
Surprise #3. Sometimes, chemo can permanently alter a person's metabolism. Two of the chemo drugs she has been getting nightly for the past year and a half, 6MP and Methotrexate, actually serve as a counter-agent to the weight gain caused by the steroids. Dr. B told me it is extremely common, in young girls like Kendrie, for them to experience significant weight gain after treatment is over. His exact words were, “The biggest concern at this point for Kendrie is that she not suffer from biscuit poisoning.” At the extremely confused look on my face, he clarified, “Weight gain.”
Although she is active, if her taste preferences continues to run towards bacon and cheese like it has the past two years, and her metabolism doesn’t kick in soon, she runs the risk of ….. (if I may be un-PC) getting pretty fat. When she was diagnosed, she was in the 50th percentile for both height and weight. Now, she is in the 30th percentile for height and the 80th percentile for weight. So, great. She’s got her grandma’s short genes, **MY** chubby genes, and the chemo all working against her. What career option is she genetically pre-disposed to be? Working as an Oompa-Loompa???
Surprise #4: Because her immune system is still weakened, she will continue to take Bactrim (a prophylactic antibiotic) for the next six moths … I actually already knew that. And she will continue her nightly Singulair and Claritin for at least three months. Although not necessarily at a greater risk for getting sick, if she WERE to get sick with a respiratory infection, bronchitis, sinus problem, etc, she IS at a greater risk for it to turn into something more serious. Fortunately, Kendrie has never been prone to colds or illness (well, except cancer, I guess!) But it is something we’ll need to keep an eye on, especially this upcoming winter season.
Surprise #5: This is the one that shocked me the most. Well, maybe “shocked” is too strong a word, but I was a bit taken aback. I made a comment, sort of half-joking, that I was looking forward to next Thursday, when I could change my grammar from “Kendrie HAS leukemia to Kendrie HAD leukemia. Right? When exactly can I change from HAS to HAD?” and the doctor’s reply was, “Never. She will always have leukemia.” OK, just why the heck did we complete these past two years of chemo, then, if not to get rid of every single cancer cell in her body?????
He explained to me that they never think they got rid of every single cell, but the assumption is that we’ve hit those abnormal cells with enough chemo that whatever leukemia cells are left, will remain dormant for the rest of her life. *IF* they were to re-awaken, hopefully her immune system will be strong enough to recognize that they are abnormal and would shut them back down. *IF* her immune system can’t shut them back down, and they begin to multiply, that is when a relapse would happen, and that kids who are destined to relapse are going to relapse no matter what. He said you could keep a kid on chemo for twenty years, but if they’re going to relapse, there’s nothing you can do about it. A little discouraging, but actually not a huge shock.
He has been an pediatric oncologist for eighteen years and obviously, he knows the vast majority of kids never relapse. The ones who do, almost always relapse in the first two or three years. In his eighteen years, he has had one child relapse after five years and one child relapse after eight. But he said relapses have been known to happen up to twenty years after completing treatment. I said, “But is that a relapse, or a new occurrence of disease?” and he said, “It’s a relapse. Always a relapse.”
The whole conversation was very interesting …. not panic-inducing, but thought-provoking. I always thought the goal of this treatment was to kill all the cancer cells ….. the thought that she still has leukemia cells floating around her body is a little unsettling to me. Not in a hysterical way, but in a disquieting way. If any of you whose children also have ALL have been told differently by your doctors, I’d love to know. I have full faith in her oncologist and if he says it, then I believe it. It just wasn’t what I expected to hear …. and I’m wondering what others have heard.
Anyway!! After our conversation, he told Kendrie to sit tight and he would be right back. He and all the nurses came back a minute later and gave Kendrie a standing ovation, and this balloon, which she carried like it was a fragile gemstone all the way home last night.
She was so happy about that balloon, I don’t think she even cared that she’ll never play pro baseball.
PS. It's a souvenir t-shirt from Gatorland in Florida ... what did you think? That I was letting her walk around with some giant, terrifying, reptilian nightmare on her chest????