About a year ago, I wrote this post. The irony, I know. So today, Mother's Day, I find myself thinking about Stacey waking up without a mother and Amy waking up without a daughter, and my heart is heavy for them.
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.
May 9, 2010
April 20, 2010
Born Again
This experience feels so much like having a newborn. So very much like that. When we were first leaving the hospital, I was so glad to be going home but so scared to be leaving the people who actually know how to do all of this. Since then, there's been a constant reporting of All Things Peach: Did she sleep? Did she eat? Did she poop? Is she cold? Is she hot? Wash your hands! Wash your hands! Wash your hands! And now, I can't believe how it feels like we just started everything but also like we've been doing it forever.
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.
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
Hair Today, Gone Tomorrow
I'm shaving my head tomorrow. On live television. Holy hell.
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?
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
Remission
Yes, you read that right. That's apparently how leukemia treatment works, when it works really well. Peach is in remission a little over four weeks after she was diagnosed. Amazing. Now comes the hard part.
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.
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.
January 1, 2010
New Year, New Normal
Two days ago, our precious, precious Peach turned 10 years old.
Yesterday, she was diagnosed with Acute Lymphoblastic Leukemia.
Today, our entire world, and everything in it, looks completely different.
Yesterday, she was diagnosed with Acute Lymphoblastic Leukemia.
Today, our entire world, and everything in it, looks completely different.
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