Dear daughter,
Although it seems like a really strange segue to my letters to you, to suddenly start talking about cancer in the second letter, I think it's important mostly because I want to get it out of the way. The day you were diagnosed with leukemia (March 19th, 2003, by the way...) has cast a long shadow on our lives.
There has been absolutely no worse day in my life, or Daddy's life, than the day I took you to Children's Hospital at your pediatrician's recommendation for bloodwork, met the man in the blood draw room who would later be your oncologist for the next 12 years until his retirement, and heard him say he thinks my almost-two-year-old has "a form of blood cancer called Acute Lymphatic Leukemia. Come back first thing in the morning, we need to do a bone marrow test." Although he had no choice (it was about 4:30 pm and operations at the hospital were closing up for the day), sending me home with you was a cruelty. I wanted to stay there, immediately find out what the hell was going on, and have them start fixing it. But home we went to Daddy, and our best friends and their girls who immediately came to offer help, and you girls played in the back yard while we grown ups stood around in a circle and held hands and cried.
So we went the next morning, joined by Grandma and Grandpa, you got the bone marrow test which confirmed ALL, you were admitted to the hospital, and thus began the journey of chemo, treatment, testing, etc. which lasted for years. You had been begging us to watch the movie Shrek, but we had not let you because we worried it was inappropriate for a girl your age. Seems silly now, but we were trying to have high standards :). When the dust settled that first day, we were in a hospital room after having been through about 12 hours straight of procedures, discussions, treatment plan options, port-a-cath discussions, more testing, scheduling for a port surgery the next day, and your first steroid pill experience. You were asleep in your big hospital bed, and Daddy drove home about 9 o'clock that night and gathered up every Disney movie we had, visited a store and bought more including Shrek, and brought them to the hospital for us to watch in the room on the VCR. We had Shrek on repeat for days for you. We no longer cared one iota that it might be inappropriate, we had much bigger worries suddenly. (And in retrospect, that's a lot like Daddy, isn't it? Helping ease the situation the best way he knew how, with movies. The man sure loves his movies...)
I won't belabor all of the next 2 1/2 years of chemo, or more years of follow-up and nail-biting. I have all that documented for you in your scrapbook, and if you ever want to know gory details, I will tell you.
The big and important thing out of this that I want you to take away is, as horrific as the experience was for all of us, and as scared and traumatized as it made me and Daddy, God was with us all the way. No, there was no "miracle cure", no sudden remission, but there were SO MANY small guideposts along the way that reassure me still that God was just as pained as we were to see you suffering in this broken world, and was working circumstances out along the way to keep it as smooth as possible. I can't go into it all here, it would just take up too much room, but I want you to trust me when I say, there is no conceivable way that the dozens of ways things worked out and circumstances happened to keep you ultimately safe, could be just a coincidence.
There are little things that still are impacted, I know, that bother you sometimes like having to keep an eye on your heart, your teeth, maybe even the celiac disease. Things that may have a root cause in the chemo. But I have to tell you, I was online friends with so many other parents around the country whose kids were going through this, who experienced some traumas and losses that I cannot even begin to comprehend. We were truly protected and blessed.
Does this mean you have a destiny? Of course, we all do. Does it mean yours is special? Well, it is to me, and to Daddy, to your other family and close friends, and of course to God. You are very special. All kids are to their parents, but what you went through, and the fortitude with which you faced it, have in my eyes made you extra special. It has shaped who you are, how you react to hardship, and many aspects of our family interactions. You kicked it, it's gone and never coming back, the side effects you have to deal with are pretty minimal, and you have big things ahead of you. To my eyes, you are truly a hero.
XXXOOO,
Mommy
Although it seems like a really strange segue to my letters to you, to suddenly start talking about cancer in the second letter, I think it's important mostly because I want to get it out of the way. The day you were diagnosed with leukemia (March 19th, 2003, by the way...) has cast a long shadow on our lives.
There has been absolutely no worse day in my life, or Daddy's life, than the day I took you to Children's Hospital at your pediatrician's recommendation for bloodwork, met the man in the blood draw room who would later be your oncologist for the next 12 years until his retirement, and heard him say he thinks my almost-two-year-old has "a form of blood cancer called Acute Lymphatic Leukemia. Come back first thing in the morning, we need to do a bone marrow test." Although he had no choice (it was about 4:30 pm and operations at the hospital were closing up for the day), sending me home with you was a cruelty. I wanted to stay there, immediately find out what the hell was going on, and have them start fixing it. But home we went to Daddy, and our best friends and their girls who immediately came to offer help, and you girls played in the back yard while we grown ups stood around in a circle and held hands and cried.
So we went the next morning, joined by Grandma and Grandpa, you got the bone marrow test which confirmed ALL, you were admitted to the hospital, and thus began the journey of chemo, treatment, testing, etc. which lasted for years. You had been begging us to watch the movie Shrek, but we had not let you because we worried it was inappropriate for a girl your age. Seems silly now, but we were trying to have high standards :). When the dust settled that first day, we were in a hospital room after having been through about 12 hours straight of procedures, discussions, treatment plan options, port-a-cath discussions, more testing, scheduling for a port surgery the next day, and your first steroid pill experience. You were asleep in your big hospital bed, and Daddy drove home about 9 o'clock that night and gathered up every Disney movie we had, visited a store and bought more including Shrek, and brought them to the hospital for us to watch in the room on the VCR. We had Shrek on repeat for days for you. We no longer cared one iota that it might be inappropriate, we had much bigger worries suddenly. (And in retrospect, that's a lot like Daddy, isn't it? Helping ease the situation the best way he knew how, with movies. The man sure loves his movies...)I won't belabor all of the next 2 1/2 years of chemo, or more years of follow-up and nail-biting. I have all that documented for you in your scrapbook, and if you ever want to know gory details, I will tell you.
The big and important thing out of this that I want you to take away is, as horrific as the experience was for all of us, and as scared and traumatized as it made me and Daddy, God was with us all the way. No, there was no "miracle cure", no sudden remission, but there were SO MANY small guideposts along the way that reassure me still that God was just as pained as we were to see you suffering in this broken world, and was working circumstances out along the way to keep it as smooth as possible. I can't go into it all here, it would just take up too much room, but I want you to trust me when I say, there is no conceivable way that the dozens of ways things worked out and circumstances happened to keep you ultimately safe, could be just a coincidence.
There are little things that still are impacted, I know, that bother you sometimes like having to keep an eye on your heart, your teeth, maybe even the celiac disease. Things that may have a root cause in the chemo. But I have to tell you, I was online friends with so many other parents around the country whose kids were going through this, who experienced some traumas and losses that I cannot even begin to comprehend. We were truly protected and blessed.
Does this mean you have a destiny? Of course, we all do. Does it mean yours is special? Well, it is to me, and to Daddy, to your other family and close friends, and of course to God. You are very special. All kids are to their parents, but what you went through, and the fortitude with which you faced it, have in my eyes made you extra special. It has shaped who you are, how you react to hardship, and many aspects of our family interactions. You kicked it, it's gone and never coming back, the side effects you have to deal with are pretty minimal, and you have big things ahead of you. To my eyes, you are truly a hero.
XXXOOO,
Mommy
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