4 days ago
Wednesday, May 08, 2013
Friday, March 08, 2013
Ninth Transplant Anniversary
Dear Anthony,
Tomorrow is your ninth transplant anniversary. Somehow this time seems to sneak up on me until BOOM! here it is! You'd think that there being only 110 days between your birthday and anniversary, this wouldn't take me by surprise.
Yep, you were 110 days old. That's three months and 8 days. Approximately 2600 hours. Tomorrow, it will have been 3,287 days since your transplant. That's 108 months. Approximately 78,800 hours. Nine years with a renewed chance at life.
And, Anthony, do you ever LIVE life. School, swimming, Cub Scouts, hanging out with your family and friends...you don't let a moment pass you by.
I never thought, in my biggest dreams for you, that you could go from a baby who couldn't even lift his arms to a kid who swims four days a week, an hour-and-a-half each time.
To see you go from this:
To this:
That is a dream come true to me.
This afternoon we leave to go camping for the weekend with the Cub Scouts. We'll spend the whole weekend outdoors, enjoying life. And that reminds of what the team of doctors and nurses told me and Daddy when they did your transplant, "We transplant these kids so they can have a chance at living a NORMAL life. So let him be NORMAL." And I think we've done a good job of it. Living life is what you do best, and I can't wait to see you keep doing it.
I love you so much. We are so lucky to have you in our lives; and we are so lucky that the amazing team at Nebraska Medical Center were able to do what they did: take a piece of Daddy's liver and give it to you.
I can't think of a better way to celebrate NINE years of health with you than outside on a gorgeous weekend.
Love,
Mama
Tomorrow is your ninth transplant anniversary. Somehow this time seems to sneak up on me until BOOM! here it is! You'd think that there being only 110 days between your birthday and anniversary, this wouldn't take me by surprise.
Yep, you were 110 days old. That's three months and 8 days. Approximately 2600 hours. Tomorrow, it will have been 3,287 days since your transplant. That's 108 months. Approximately 78,800 hours. Nine years with a renewed chance at life.
And, Anthony, do you ever LIVE life. School, swimming, Cub Scouts, hanging out with your family and friends...you don't let a moment pass you by.
I never thought, in my biggest dreams for you, that you could go from a baby who couldn't even lift his arms to a kid who swims four days a week, an hour-and-a-half each time.
To see you go from this:
To this:
That is a dream come true to me.
This afternoon we leave to go camping for the weekend with the Cub Scouts. We'll spend the whole weekend outdoors, enjoying life. And that reminds of what the team of doctors and nurses told me and Daddy when they did your transplant, "We transplant these kids so they can have a chance at living a NORMAL life. So let him be NORMAL." And I think we've done a good job of it. Living life is what you do best, and I can't wait to see you keep doing it.
I love you so much. We are so lucky to have you in our lives; and we are so lucky that the amazing team at Nebraska Medical Center were able to do what they did: take a piece of Daddy's liver and give it to you.
I can't think of a better way to celebrate NINE years of health with you than outside on a gorgeous weekend.
Love,
Mama
Thursday, January 24, 2013
Sharing
After Benjamin was born, Mark and I agreed that our two boys were plenty enough to complete our family. We decided that we would wait a year to make sure that Benjamin was healthy before we took steps to ensure that our family of four remained that way. A week after Benjamin turned one, I had a tubal ligation. End of story, right?
Ha.
Just before Christmas, Mark and I learned that I was pregnant. We had only two days to adjust to that idea before we found out that I was miscarrying. Can you imagine the emotions you go through in a situation like this? I certainly couldn't. Toss in the whacky hormones you experience in early pregnancy and you have a recipe for emotional disaster. (Oh, Laurie. You're so dramatic).
Fast forward to the New Year. I've miscarried. End of story, right?
Ha.
Ha.
The Thursday afer New Years, I had another blood test done to make sure my pregnancy hormones were still falling (they need to track it back to 0, and I was at 105 mlU/ml). They weren't. The hormone level had more than doubled (to 305), over-reaching my original level (of 220). Two ultrasounds were negative for ectopic pregnancy and tumors. But my hormone level kept rising.
The doctors told me that the general assumption was that this was an ectopic pregnancy, but one that couldn't be seen on ultrasound. Mark and I decided that I would take a treatment of methotrexate to end the pregnancy. That was another punch in the gut to me. I know that the ectopic pregnancy wasn't viable, but it was still life, and everything I have been raised to believe as a Catholic states that ending life is wrong. It wasn't a good time for me emotionally.
I had that treatment on Thursday, January 10 and returned to my doctor's office the following Monday for another blood test. At that point, my hormone level had gone up, more than doubling again. My doctor then told me that this was a (slim) possibility after the methotrexate treatment, but that if it didn't fall again by the following recheck on Thursday (January 17th), I would be referred to oncology to begin looking for "other causes".
Please. "Other causes"? In ONCOLOGY? That's not going to freak me out! My doctor tossed out a long (scary) medical term (postpartum trophoblastic disease) that I instantly decided not to Google until I was faced with it as a diagnosis. And then I caved and asked one of the medical directors at my office who is an OBGYN what postpartum trophoblastic disease is, and he explained it to me. It's NOT classified as cancer (yet), but it can metastasize, requires chemotherapy treatments that are no fun, etc etc. Yikes.
Fast forward to Thursday (although the time between Monday and Thursday literally DRAGGED), and my hormone level DROPPED! Finally! It fell to 361 mlU/ml and I was able to breathe a sigh of relief. I had another round of labs today, and it fell further to 75 mlU/ml. So at this point, it seems as though I did suffer an ectopic pregnancy and I'm not facing scary treatments.
Whew.
I'm telling this now because I felt so alone during all of this. I had my family, and Mark (of course), and they were GREAT. But none of them had ever experienced this and I think it was hard for them to really understand the whacky hormonal lady and her whacky hormonal crazies. If I had known of someone who had been through something remotely similar, I think I might have felt better about it all. But at the same time, I didn't want to talk about it to just anyone. I really kind of wanted that someone to magically find me (see above: whacky hormonal crazies). So if someone out there one day reads this, maybe they'll feel comfortable reaching out to me just to get some validation about the whacky hormonal roller coaster they get to ride.
Upside: it's not even the end of January and we've already met our $2600 deductible for the year. SCORE!
Ha.
Just before Christmas, Mark and I learned that I was pregnant. We had only two days to adjust to that idea before we found out that I was miscarrying. Can you imagine the emotions you go through in a situation like this? I certainly couldn't. Toss in the whacky hormones you experience in early pregnancy and you have a recipe for emotional disaster. (Oh, Laurie. You're so dramatic).
Fast forward to the New Year. I've miscarried. End of story, right?
Ha.
Ha.
The Thursday afer New Years, I had another blood test done to make sure my pregnancy hormones were still falling (they need to track it back to 0, and I was at 105 mlU/ml). They weren't. The hormone level had more than doubled (to 305), over-reaching my original level (of 220). Two ultrasounds were negative for ectopic pregnancy and tumors. But my hormone level kept rising.
The doctors told me that the general assumption was that this was an ectopic pregnancy, but one that couldn't be seen on ultrasound. Mark and I decided that I would take a treatment of methotrexate to end the pregnancy. That was another punch in the gut to me. I know that the ectopic pregnancy wasn't viable, but it was still life, and everything I have been raised to believe as a Catholic states that ending life is wrong. It wasn't a good time for me emotionally.
I had that treatment on Thursday, January 10 and returned to my doctor's office the following Monday for another blood test. At that point, my hormone level had gone up, more than doubling again. My doctor then told me that this was a (slim) possibility after the methotrexate treatment, but that if it didn't fall again by the following recheck on Thursday (January 17th), I would be referred to oncology to begin looking for "other causes".
Please. "Other causes"? In ONCOLOGY? That's not going to freak me out! My doctor tossed out a long (scary) medical term (postpartum trophoblastic disease) that I instantly decided not to Google until I was faced with it as a diagnosis. And then I caved and asked one of the medical directors at my office who is an OBGYN what postpartum trophoblastic disease is, and he explained it to me. It's NOT classified as cancer (yet), but it can metastasize, requires chemotherapy treatments that are no fun, etc etc. Yikes.
Fast forward to Thursday (although the time between Monday and Thursday literally DRAGGED), and my hormone level DROPPED! Finally! It fell to 361 mlU/ml and I was able to breathe a sigh of relief. I had another round of labs today, and it fell further to 75 mlU/ml. So at this point, it seems as though I did suffer an ectopic pregnancy and I'm not facing scary treatments.
Whew.
I'm telling this now because I felt so alone during all of this. I had my family, and Mark (of course), and they were GREAT. But none of them had ever experienced this and I think it was hard for them to really understand the whacky hormonal lady and her whacky hormonal crazies. If I had known of someone who had been through something remotely similar, I think I might have felt better about it all. But at the same time, I didn't want to talk about it to just anyone. I really kind of wanted that someone to magically find me (see above: whacky hormonal crazies). So if someone out there one day reads this, maybe they'll feel comfortable reaching out to me just to get some validation about the whacky hormonal roller coaster they get to ride.
Upside: it's not even the end of January and we've already met our $2600 deductible for the year. SCORE!
Tuesday, November 20, 2012
Nein...Anthony is NINE? NEIN.
Dear Anthony,
Today you are NINE. This seems to be a big deal to you: it's the last year you'll be single digits. It's a big deal to me, too. But every birthday we celebrate with you is a big deal to me.
This past year has been pretty awesome for you! You've continued to swim on a local swim team and have loved it. You got to go to San Diego, CA for a couple of weeks to Legoland, Disney Land, Sea World, the San Diego zoo, and a lot of other fun places, too. You started Third Grade and are loving your Science class more than anything else; you were so excited that Science became a full-time subject in Third Grade. You say you want to be a Chemist like Parrain when you grow up, and try to absorb anything "science-y" that you can.
You still love Legos. This year it's become Lego Ninjago that holds your fascination. You talk of Lord Garmadon, Lloyd, Kai, Jay, and all of the other Ninjas as if they're real. You sit down with Daddy and Benjamin on Wednesday nights to watch the Ninjago TV show and dissect every little nuance of the show afterwards. You still play with all of the other Legos you've got; Star Wars, City, trains (with Benjamin when he begs you to). There are very few other toys that you want to play with if the other choice is LEGOS.
You made your First Communion in April, and were SO excited to finally be able to take communion with us at Mass. You asked all kinds of important questions about making your First Communion, but the one you were most concerned about was whether you had to drink the wine or not. You were hesitant to do it, but took a tiny sip of it during the Ceremony and decided you wouldn't like to do THAT again!
Shortly after First Communion, you asked to have your hair cut "really, really short". So I broke out Daddy's electric hair trimmer and buzzed you. At first, it took a little getting used to. But after a few days we all agreed that it looks REALLY good on you. You're letting your hair grow out "for the winter, Mama" and it looks strange to me - seeing you with longer hair might take some getting used to. And then, I'm sure you'll want it buzzed again!
You got braces this summer, too. You were so excited about getting them and rarely complain of pain associated with them. I'm so glad, because I remember that mine were painful; especially after a visit to the orthodontist. You've done a really good job of keeping them clean and in good condition. And we've already noticed a huge improvement in your teeth placement and speech.
You make us laugh every day. You are so smart, sweet, and loving. You hate when Benjamin cries, and always want to be first into his room in the morning for hugs. You love to help cook in the kitchen, camping out with Daddy, playing with your friends, building elaborate Lego creations with Benjamin, and reading with me. You don't like being told "no" without an explanation to go with it, missing school, or sleeping late.
Watching you grow and change is one of the best parts of my life. Each day it seems like you're less a boy and more the man I know you will one day be. Keep making me laugh, Anthony...you're what makes my days bright. Love, Mama
This past year has been pretty awesome for you! You've continued to swim on a local swim team and have loved it. You got to go to San Diego, CA for a couple of weeks to Legoland, Disney Land, Sea World, the San Diego zoo, and a lot of other fun places, too. You started Third Grade and are loving your Science class more than anything else; you were so excited that Science became a full-time subject in Third Grade. You say you want to be a Chemist like Parrain when you grow up, and try to absorb anything "science-y" that you can.
You still love Legos. This year it's become Lego Ninjago that holds your fascination. You talk of Lord Garmadon, Lloyd, Kai, Jay, and all of the other Ninjas as if they're real. You sit down with Daddy and Benjamin on Wednesday nights to watch the Ninjago TV show and dissect every little nuance of the show afterwards. You still play with all of the other Legos you've got; Star Wars, City, trains (with Benjamin when he begs you to). There are very few other toys that you want to play with if the other choice is LEGOS.
You made your First Communion in April, and were SO excited to finally be able to take communion with us at Mass. You asked all kinds of important questions about making your First Communion, but the one you were most concerned about was whether you had to drink the wine or not. You were hesitant to do it, but took a tiny sip of it during the Ceremony and decided you wouldn't like to do THAT again!
Shortly after First Communion, you asked to have your hair cut "really, really short". So I broke out Daddy's electric hair trimmer and buzzed you. At first, it took a little getting used to. But after a few days we all agreed that it looks REALLY good on you. You're letting your hair grow out "for the winter, Mama" and it looks strange to me - seeing you with longer hair might take some getting used to. And then, I'm sure you'll want it buzzed again!
You got braces this summer, too. You were so excited about getting them and rarely complain of pain associated with them. I'm so glad, because I remember that mine were painful; especially after a visit to the orthodontist. You've done a really good job of keeping them clean and in good condition. And we've already noticed a huge improvement in your teeth placement and speech.
You make us laugh every day. You are so smart, sweet, and loving. You hate when Benjamin cries, and always want to be first into his room in the morning for hugs. You love to help cook in the kitchen, camping out with Daddy, playing with your friends, building elaborate Lego creations with Benjamin, and reading with me. You don't like being told "no" without an explanation to go with it, missing school, or sleeping late.
Watching you grow and change is one of the best parts of my life. Each day it seems like you're less a boy and more the man I know you will one day be. Keep making me laugh, Anthony...you're what makes my days bright. Love, Mama
Saturday, November 10, 2012
Almost 9
Anthony's birthday party with his friends was today. His actual birthday is November 20th, but as that's two days before Thanksgiving, we decided to hold it today. The cake was amazing, and he had a blast!
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