December 22, 2010
When we were checking out of the hospital way back when, the Child Life Specialist had all sorts of information about special programs Peach was eligible for, including Make-a-Wish. It was all I could do to hold it together and take that GD pamphlet, which I quickly stuck in the bottom of the pile, destined for the first recycling bin – or fireplace – I could find. Six days into this thing, I refused to “go there,” so I had no intention of discussing it with Peach any further.
About a month later, we were at the clinic for a long day, and the Child Life Specialist there asked Peach if she had made her wish yet. Shit. Peach said no, so, bless her heart, the CLS went into great detail about what Peach could wish for, and "here, let’s look at their website, and that kid over there did this, and that kid over there did that" … I was cringing. That is, until I caught a glimpse of their FAQs page, and the post for “Are wishes only offered to kids who are terminally ill?” And the answer is NO. Exhale.
After that, the process began in earnest, and we knew within another month or so that Peach’s wish to go to Disneyworld was granted. I say *we* meaning T-Bone and me. I didn’t want to tell Peach in case I needed “something” for incentive on a really rough day. Which, thankfully, we didn’t have that many of, and I was able to keep the surprise until our grand Back to School Feast. We’ll be going to Universal Studios, too, so the big reveal was done via owl and an official letter from Hogwarts, inviting Peach to enroll the day after her 11th birthday. She is beyond excited, but she told me last night that she doesn’t know what she’d be thinking right now if “all that hadn’t happened last year.” Me neither, my love.
If I did a word search of my posts for this year, I realize there would be a handful of buzzwords and catchphrases that are repeated ad nauseum. You know the ones. The words that everyone uses to describe cancer and treatment and people going through it. The phrases that every non-profit uses to promote their cause and tug at your heartstrings and encourage you to open your wallet. I don’t know how it happened, but I just slipped into that language (Cancerspeak?), and the clichés flowed like water. Or wine. You choose.
But here’s the thing: Cancer IS a monster. Treatment IS a battle, fight, journey. People going through it ARE brave, amazing, inspiring. And we MUST raise awareness, funds, and hope to find a CURE.
So, no apologies. Just immense gratitude for Peach’s success and for the love and light surrounding us. And for this disease? A lasting hatred that I’ve been told is – yes – inspiring.
November 30, 2010
I am not dwelling in "the past," not any more than in your run-of-the-mill "they grow up so fast" sense, and I am beyond hopeful for the future. But I can't ignore the seismic shift in our lives since the last time we put up Christmas decorations. Will it get easier as the years go by? I think so. And I also think it's okay, at least this first year, to struggle with the New Normal's impact on the Old World Order.
October 31, 2010
Lest you think the talk around here is All Cancer, All the Time, I can tell you it is most assuredly not. In our never-ending quest for normalcy, we have had many moments of laughter, levity, and downright joy, but one of the brightest moments has been The Blossoming of Miss Olive.
Absolutely remarkable, this one. Olive hates everything to do with the doctor, and at first, I was so worried that she would be forever traumatized regarding all things medical after watching Peach go through treatment. In fact, I caught myself thinking, God forbid, if this were Olive, it would be a whole different story - compliance-wise. But now? I'm not so sure.
We have all been pleasantly surprised by, and immensely proud of, the way Olive has handled herself and made her way through all of this. She cried the very first night because she didn't want Peach, T-Bone, and me to spend the night at the hospital without her, but after that, and a few heartfelt, age-appropriate conversations, she has been solid as a rock. Pink granite.
She is so empathetic, just patting on Peach and cheering her on at every turn. She is a huge helper, bringing Peach a cold rag when she's not feeling well and making sure we're all quiet when Peach is resting. She was genuinely more excited for Peach to get back to school than for herself, and the first time we saw one of the American Cancer Society's "Happy Birthday" commercials, she reached over to pat Peach and just smiled at her. It was just the sweetest thing. She so GETS it, but she's not afraid of it.
So in the waning hours of this, her birthmonth, I want to celebrate my brave, beautiful 7 year old girl and say Happy Happy Birthday dear Olive. I love you!
September 20, 2010
I haven't cried that hard in a while. I just don't have time for it, really. But seeing Peach doing what she loves so much, smiling and enjoying herself without a care in the world - it just undid me. "It" was all there, and we just had no idea. She wasn't showing any of the signs that ultimately led us to the doctor two weeks later, but It had already started.
I have spent way too much time and energy trying to pinpoint the exact moment this all began, and the truth is, we will never know for sure. I look at pictures from weeks, days, even hours before diagnosis, searching for the tiniest indication of change - any evidence of what was to come - and I can't find it. And it drives me crazy. Even though I know we caught It as early as we could have, and much earlier than many people do, I can't get over the fact that there was A Moment when a cell in Peach's perfect little body decided to wreak havoc, and I didn't have the opportunity or the capacity to stop it.
In the first few days and weeks after we came home from the hospital, I had a hard time seeing healthy children, out and about in public with their happy parents, enjoying their holidays. I wasn't envious or angry, just very sad. For them. I thought how blissfully ignorant those parents were of the fact that their baby could get cancer. I wondered if it ever occurred to them that their healthy child could ever get so sick, seemingly in an instant. And, of course, the answer is NO. Because I used to be them, and as much as I worry about everything, real and imagined, it never truly occurred to ME that this could happen. And that's saying a lot.
People ask me questions all the time about leukemia and blood cells and chemotherapy, and they often apologize, saying, "I'm sorry. I just don't know much about all of this." My answer is always, "Of course you don't. Why would you?" I didn't know much about all of "this" either before now, and I'm learning all the time because I have to. I need to. I want to. And with all the learning and emoting I've been doing, maybe someday I'll be able to let go of my obsession with Its birth. Even better, maybe I'll finally be able to accept (without having to remind myself first thing every morning) that this is actually happening at all.
September is National Childhood Cancer Awareness Month. Please consider supporting CureSearch's efforts to fund life-saving research for all childhood cancers. Peach thanks you.
August 16, 2010
So now, like most survivors and their families, I'll take my place atop the razor's edge and pray like hell (um ...) that when she's done, she's really done. For good. I am not a pessimist, but I am a huge worrier, and I'm quite sure I'll never rest completely until there's an absolute, bona fide cure for this evil. Because the only thing that scares me more than having to go through all of this is having to go through it all again. The chances of a recurrence are small, but so are the chances of getting childhood cancer in the first place. So because of the worrying thing, and the fact that I am very superstitious, I shy away from grand, all-encompassing words like "last" and "forever." Everything is qualified with some grey-area BS, if only in my head. Even the night before Peach was diagnosed, the night before her birthday, when we had NO idea what was to come the next day, she started to say something like,"This is the last night I'll sleep in my bed ..." and I actually knocked on wood and said, "As a nine year old." Turns out, it was the last night she slept in her bed for nearly eight months. And counting.
I am confident that Peach has received, and will continue to receive, the best care possible. Again, the fact that there was a proven treatment plan ready for her, one that has worked so well for her, is a HUGE source of comfort. But when the answer to most of my (many) questions about any of this is "it depends," it's hard to be completely comfortable. For now, however, I'm stepping back and marveling at our family's journey and feeling grateful for the love and support we've been shown. We will continue to take it day by day and keep on fighting, raising money, and celebrating Peach's victories because, thankfully, there are many.
June 20, 2010
As for T-Bone, y'all know how I feel about him. And so does he. Honestly, they broke the mold.
May 9, 2010
When Peach was diagnosed, I was encouraged to reach out to these people, and I didn't (still haven't) because I knew, even in the first confused moments of this nightmare, that Peach's journey would have a different outcome. And I felt incredibly guilty about that. I thought it was too soon for these people to be supporting anyone but their own families and how selfish it would be to drag them back into this world when they've barely begun to crawl out of it themselves.
From Day One, we were given a plan, a proven, successful plan, and all we've had to do is follow it. We haven't had to experiment or "best guess" anything, and the clinical trial Peach is enrolled in just tests the administration options for a certain medicine, not its success or effectiveness. There are no Hail Marys here. Not medical ones anyway. Truly, the only surprise we've had is that Peach was ever diagnosed in the first place. How lucky we are.
I am in NO WAY diminishing what Peach is going through, but every time we visit the clinic or the hospital, we see families with much harder rows to hoe. Some have little hope for recovery or they have life-long, life-altering effects and disabilities to manage. Many have few resources and no support outside of their treatment team, and just to get their child to appointments is a monumental feat. These families are fighting just as hard as we are, even with the deck stacked against them in one way or another, because what else can they do? No one will ever care for their child as much and as well as they do, and somewhere inside, they know that, and so they press on. And on and on. It's inspiring and gut-wrenching at the same time.
Of course, nobody wants to do any of this. You do it because you have to. You watch as your child gets pumped with medicines with "toxin" in the name because what choice do you have? You consent to procedures with page after page of risks and potential side effects (some that won't surface for YEARS) because how can you not? You focus on the here-and-now or you will come undone. And still, I am thankful. I know Peach will get better and this is what we do to make that happen.
Today, we spent a few hours at the hospital, where Peach was getting the last two of 12 shots she's had over the last 12 days (two, every other day). The shots take only a few minutes, but we have to stay for observation for two hours in case she has an allergic reaction. While we waited, we snuggled up in the hospital bed together, watching the rain outside. I held her close and kissed her fuzzy head, and we decided that this was the best Mother's Day gift ever. And it was.
April 20, 2010
Little by little, we're making our way along - always learning. And Peach is just the champion of all champions. This past month or so has been the hardest so far, and she has 10 pounds less of herself to show for it. She had a severe allergic reaction that required a night in the hospital a couple of weeks ago, but other than that pretty big hiccup, she's progressing as expected for this protocol (which I've been told by those in the know is as highly successful as it is highly miserable). She is still engaged and interested, and I know her cooperation makes it so much easier for the treatment team. They often practically fight to get to her first because she's such a joy to work with. Her hair has started to grow back (for now - will likely come in and out several more times), and it has that peach fuzz texture I remember from the first time I watched it come in. I am, again, amazed by and enamored with this beautiful creature.
A lot of people have told me a lot of things about a lot of stuff recently, and just like with a newborn, you have to filter through all the "advice" and find what works for you and yours and just do that. Of course everyone means well, and I know it's hard to find the right thing to say, and I am the MOST guilty of saying things that don't come out right at the worst possible moment. That said, the other day, a friend was tearfully talking about Peach's "character" and how this experience will "really build her character," and the whole conversation just didn't sit right with me. I understand what my friend was trying to say, but I thought, NO. Just NO.
Addressing that fucking monster in her blood, I thought, this child already has more character than any grown person could ever dream of having. Any 100 grown people. She didn't need this experience to build character, she's there. She's been there since the day she was born. Will this nightmare impact her life going forward? Yes, unfortunately forever. But it will not change who she is and what she's made of because that is what's getting her through it right now. It's what's getting us ALL through it.
There will never come a moment where we say, "Remember that time you had leukemia?" But as much as we search for and drain every drop of positivity out of all of this, Peach will not be defined by it, not now, not ever.
From the moment we got the diagnosis, I told the doctor that we have to fix this. That Peach is a special, special girl and anyone that knows her will tell you that. That she has many great things to do and that we just have to fix this. And we are. So as I feed her and bathe her and watch her sleep, I think about how far my baby has come, and I'm confident that this is all leading to the greatness she was already destined for.
March 16, 2010
We've been fundraising for St. Baldrick's, an amazing organization, and the big event is this Saturday. Individuals and teams volunteer to shave their heads to support childhood cancer research, and one of the local organizers contacted us about doing an interview/live shave as a promotion. Ever the drama queen, I said YES, so off it comes tomorrow morning.
Compared to everything else she's been through, losing her hair hasn't really bothered Peach in the slightest. When she first heard that it would happen, not having any experience or even a passing knowledge about cancer, she got a little upset. But when I explained that her hair would grow back, and that Daddy's hair would never grow back, she laughed and hasn't given it a second thought since.
I'm excited to see what it looks like when it grows back - maybe the Shirley Temple ringlets of her babydom. As for mine, I'm confident that the silver mini-fro will be the next big thing in coiffure.
Also, somehow my FOUR year bloggiversary was in February. The hell?
February 3, 2010
The thing is, I can talk about all of this all day long (and I do, sometimes), and I can hear the words "cancer" and "chemotherapy" and "Peach" all in the same sentence, and still. STILL. There is a little part of me that can't believe, won't believe, this has happened. A little part that is just sure the next time we go to the clinic or talk to the doctor, the jig will be up, and they will know we've blown this whole thing out of proportion. When T-Bone was shaving her head the other night, I actually thought to myself, "Oh, here we're doing all of this, and it isn't really even necessary. It's all just a big mistake."
I know that "little part" is named Denial, I know. And try as it might, Denial's voice is very small and has absolutely NOT kept me from forging full-steam ahead on the treatment plan from Day One. But I do think Denial has kept me from losing my ever-loving mind at times because I have decided this: If a parent in this situation ever completely processed what was happening, they would be rendered useless. It's just too huge to fully comprehend and still be able to function. There's a disconnect in there somewhere. The first thing I said to the doctor when she gave us the diagnosis was, "Are you sure? Because I really feel like you're talking to someone else." And I still feel like that.
But she was sure, and she was talking to us, and now, it's been four weeks, and the leukemia cells are gone. The problem is, they have a habit of not staying gone, so now we begin six months of IV and spinal chemotherapy, followed by two years of maintenance therapy, during which Peach will take oral chemotherapy and have regular visits to the clinic. She should be able to return to school in the fall, and her hair will start coming back once she's through with the harder IV meds. She's tolerated everything really well so far, and the main thing we have to watch out for is any type of infection. We're lucky that she and Olive both are normally very healthy kids, without any chronic health issues (allergies, asthma, etc.) to manage on top of treatment. We have every confidence in her doctors and the facilities here, and we are surrounded by loving family and friends. We are truly blessed in many ways.
The biggest blessing of all? Peach. At diagnosis, I told the doctor that we had to fix this because Peach has many great things to do and anyone that knows her would say that she is a special, special little girl. And she continues to prove me right every day. She is confident, engaged, and actively participating in her treatment. She knows she will be cured but will have to fight to get there, and she proceeds as the thoughtful, quiet warrior that she is. How lucky I am to be her mother. I am amazed by her courage and happily bear witness to her incredible grace. And while I have my quiet moments of doubt, I am buoyed by a strength that is not my own, and I have never seen more clearly that God is good.