Wednesday, April 27, 2011
Nice rebound
Dear Madeline,
What an interesting last 10 days. I very much wanted to write to you last week to tell you about how your appointment went and to go over your counts and the like, but that didn't happen. Instead, because your appointment did not go as planned, you were admitted to the hospital overnight for precautionary purposes. I had very much wanted to write to you about that as well, but thought better of it and instead allowed the span of several days to fill the gap and help me see things a little more clearly.
Long story short, your vital signs and your counts all looked fine at your appointment last week but you were, as we were informed, accidentally given too much medicine. There's really not much more you need to know about that, but you did get to see all of your new friends on the nursing staff on the pediatric oncology floor of the hospital again. And they were so happy to see you just being a typical baby (save for the cancer treatment, of course).
Mom and I were pretty nervous about how your appointment this week would go. Since you received 2 different chemotherapy drugs last week and too much of another medicine to go along with it, we were very concerned about your blood cell counts and your absolute neutrophil count and the attending possibility that you would need a blood transfusion, antibiotics, or additional hospitalization (or some, if not all, of these things) in order to get your immune system stabilized. Instead, you wowed us, and I think the doctors too. Everything seemed to be within acceptable ranges, and in some cases, your counts were better than last week.
I can't even begin to describe our relief... my relief. You've certainly been showing yourself to be a miracle baby, fighting through everything the doctors have thrown at you and returning victoriously looking for more, as if to ask if that's all they've got. You're stronger than most, which says quite a lot light of your tender age. To have kept almost all of your hair so far to boot, well I think you're just thumbing your nose at this cancer.
This week's treatment seems to have you feeling poorly, but you usually feel poorly in the 2-3 days after treatment. Still, Mom and I can't say definitively whether it's the treatment that's bringing you down or the 4 teeth that seem primed to burst through your gums any day now. Knowing you, the teeth are probably bugging your more than the chemo. We'll see if I'm right next Tuesday.
Love,
Daddy
Sunday, April 24, 2011
Happy Easter, Maddie!
Dear Maddie,
Jesus Christ is Risen today...Alleluia, Alleluia, Alleluia! These are lyrics to a song Christians all around the world sing today as we celebrate the Resurrection of Jesus, our Savior. Alleluia is a song of praise to God.
You celebrated your first Easter today. It isn't a good idea for you to be in crowds, so you couldn't go to Mass or celebrate in our traditional family Easter celebrations. How we missed you...our hearts broke that you couldn't join our family celebrations, but Grandpa and I were thrilled to visit you this morning!
Here's what you should know about Easter...this is the holiest of all holy days in our Christian tradition. We celebrate the Resurrection of Jesus today! Churches welcome new members during Easter Vigil Masses all around the world and Christians everywhere celebrate and praise the Son of God, Jesus Christ, in whom we have Salvation.
Monday, April 18, 2011
Mashed Potatoes
Dearest Maddie,
We had lots of fun yesterday. You, Josie, Grandpa and I had a delicious dinner, I introduced you to mashed potatoes. Guess what? You loved them! You loved the texture, taste, and most of all the way they felt when you squished them between your fingers.
Smart as you are, you decided to look no further when you needed a napkin, I was right there...my blouse was the perfect napkin! By the way, you thought the squash was okay, but not as appealing as the mashed potatoes. The squash came in handy for dunking your teething biscuit.
YEAH, we'll put mashed potatoes at the top of the list of things you like!
I love you precious, Maddie!
How well you've done so far
Dear Madeline,
It's been almost 2 weeks since I last wrote to you. It's not for a lack of wanting. Rather, you've really been ruling the roost lately. Between your teething pain that's been keeping you up all hours of the night and my getting back to work, I really haven't been bringing my "A game."
Last week we marked your 9-month birthday, and as your present to Mom and I you tolerated your chemotherapy remarkably well. We really didn't see the same sort of downside I've come to expect. Maybe the pain of your new teeth pushing down on your gums helped to distract you from how bad you would have otherwise felt after chemo. Still, your smiles and desire to have things your way shone on through. You played on the floor, hung out in your walker and generally remained in a decent mood for most of the week. Except until the sun went down. Then it was a different story entirely.
It's been almost 2 weeks since I last wrote to you. It's not for a lack of wanting. Rather, you've really been ruling the roost lately. Between your teething pain that's been keeping you up all hours of the night and my getting back to work, I really haven't been bringing my "A game."
Last week we marked your 9-month birthday, and as your present to Mom and I you tolerated your chemotherapy remarkably well. We really didn't see the same sort of downside I've come to expect. Maybe the pain of your new teeth pushing down on your gums helped to distract you from how bad you would have otherwise felt after chemo. Still, your smiles and desire to have things your way shone on through. You played on the floor, hung out in your walker and generally remained in a decent mood for most of the week. Except until the sun went down. Then it was a different story entirely.
Saturday, April 9, 2011
The picture of resilience
Dear Madeline,
You, my dear, inspire me. A few days ago you rang the bell down in radiation oncology to signify the end of your radiation treatments. Before we left that day, the nurses there made sure to keep a central line accessed in your port. A few hours later, you showed us that your victory would not be confined to the morning hours by ripping off the dressing over your port and pulling out the needle from your central line into your port. You "deaccessed" yourself in a declaration of this was to be an all-day victory celebration. (After a phone call to the hospital's on-call pediatric oncologist, we were relieved to hear that no further action was needed on Monday.)
During your clinic appointment (your scheduled follow-up appointment with the oncologists), the doctors were quite impressed. All of your counts - your platelets, your red and white blood cells, your nutrition, your ANCs - were all "normal." Not bad considering you had some low counts prior to last week's double-duty chemo doses. What's more, the docs were very impressed that you deaccessed your port all on your own. They were also inspired by this, and speculated that you may have a grand surgical career in your future.
Your fight and resilience continue to be on display every day, side-by-side with your smile. With the help of some specialty medicines designed to help cancer patients deal with the effects of chemo, you're doing incredibly well. And you've managed to hang on to your hair! It has indeed thinned out just a little bit, and I must admit that I fully expected to be using your bald head to catch my own reflection by now. Keep proving me wrong, Sweet Pea. You are my hero.
Love,
Daddy
You, my dear, inspire me. A few days ago you rang the bell down in radiation oncology to signify the end of your radiation treatments. Before we left that day, the nurses there made sure to keep a central line accessed in your port. A few hours later, you showed us that your victory would not be confined to the morning hours by ripping off the dressing over your port and pulling out the needle from your central line into your port. You "deaccessed" yourself in a declaration of this was to be an all-day victory celebration. (After a phone call to the hospital's on-call pediatric oncologist, we were relieved to hear that no further action was needed on Monday.)
During your clinic appointment (your scheduled follow-up appointment with the oncologists), the doctors were quite impressed. All of your counts - your platelets, your red and white blood cells, your nutrition, your ANCs - were all "normal." Not bad considering you had some low counts prior to last week's double-duty chemo doses. What's more, the docs were very impressed that you deaccessed your port all on your own. They were also inspired by this, and speculated that you may have a grand surgical career in your future.
Your fight and resilience continue to be on display every day, side-by-side with your smile. With the help of some specialty medicines designed to help cancer patients deal with the effects of chemo, you're doing incredibly well. And you've managed to hang on to your hair! It has indeed thinned out just a little bit, and I must admit that I fully expected to be using your bald head to catch my own reflection by now. Keep proving me wrong, Sweet Pea. You are my hero.
Love,
Daddy
Tuesday, April 5, 2011
Eskimo Kisses...
Dear Maddie,
You are so smart...I taught you Eskimo kisses on Sunday. Yesterday, Grandma Vickie told me you taught her Eskimo kisses! No surprise, after all you are very smart! Before long, you'll teach Eskimo kisses to everyone. Great job, Maddie! I love you, precious!
You are so smart...I taught you Eskimo kisses on Sunday. Yesterday, Grandma Vickie told me you taught her Eskimo kisses! No surprise, after all you are very smart! Before long, you'll teach Eskimo kisses to everyone. Great job, Maddie! I love you, precious!
Monday, April 4, 2011
Bell Day
Dear Madeline,
"She's no cheap date." That's what the anesthesiologists said about you after they brought you out from one of your radiation treatments. What they meant was that they needed to give you more anesthesia than they expected in order to keep you asleep during the treatment.
Today you received your final radiation treatment. It's a significant milestone in your recovery. When the nurse carried you back out to us in her arms, our first thought was that something had gone wrong. But when we saw her smiling, and when we saw you awake and alert, my second thought was "I guess those anesthesiologists were right!" The nurse told us that you started waking up almost as soon as the treatment was done. (The radiology nurses need to start unhooking all the wires and lines as soon as their patients start waking up, at least their little patients anyway.) I think you were more eager than even your Mom and I to get out of there and get home.
Sunday, April 3, 2011
Fun with Maddie...
Dearest Maddie,
You and I had lots of fun today. We watched the video of the twin baby boys talking with each other. The twins amused you, but you kept your lips zipped, you wouldn't share what they were saying! We did things besides watching the cute twins, we cuddled, sang, played, and danced.
I played Frank Sinatra's "The Way You Look Tonight", you loved it! You were proud of yourself as you sang along. You giggled as we danced; thank you for letting me lead! Each time the song ended you looked longingly for me to replay it. How could I refuse? I played it over and over...you would have been thrilled if I played it all night! We also watched Care Bear vignettes and listened to Disney tunes. Whew...you were exhausted!
You warmed my heart as we snuggled and you closed your eyes. We said prayers before you fell asleep. God, your guardian angel, St. Michael, and all of HIS angels are surrounding you with HIS healing, love, and protection. Tomorrow is your last radiation treatment-yeah! Brilliant rays of God's healing and protection will continue to surround you-think Care Bear Stares! I think the Care Bears got the idea to stand close and create an arch of glowing light around their characters from God's angels. Angels are drenching you in the glow of God's healing grace. See why I think the Care Bears borrowed this idea from the angels? Savor the magnificence of God's healing light and His angelic messengers!
I love you precious, Maddie!
You and I had lots of fun today. We watched the video of the twin baby boys talking with each other. The twins amused you, but you kept your lips zipped, you wouldn't share what they were saying! We did things besides watching the cute twins, we cuddled, sang, played, and danced.
I played Frank Sinatra's "The Way You Look Tonight", you loved it! You were proud of yourself as you sang along. You giggled as we danced; thank you for letting me lead! Each time the song ended you looked longingly for me to replay it. How could I refuse? I played it over and over...you would have been thrilled if I played it all night! We also watched Care Bear vignettes and listened to Disney tunes. Whew...you were exhausted!
You warmed my heart as we snuggled and you closed your eyes. We said prayers before you fell asleep. God, your guardian angel, St. Michael, and all of HIS angels are surrounding you with HIS healing, love, and protection. Tomorrow is your last radiation treatment-yeah! Brilliant rays of God's healing and protection will continue to surround you-think Care Bear Stares! I think the Care Bears got the idea to stand close and create an arch of glowing light around their characters from God's angels. Angels are drenching you in the glow of God's healing grace. See why I think the Care Bears borrowed this idea from the angels? Savor the magnificence of God's healing light and His angelic messengers!
I love you precious, Maddie!
Friday, April 1, 2011
Lovely...Never, Never Change...
Dearest Maddie,
You're smart and spunky, essential qualities for the battle you've been fighting! Your Mommy & Daddy share these qualities, it helped them get you the best medical care in the world and to ask insightful, probing questions.
Maddie, you amaze me! You always muster a smile, often lots of them, and giggles too, even when you feel miserable due to the side effects of your treatment. You wrinkle your nose, amuse me with your silly expressions, and teach me important life lessons like the importance of playing in a bath.
Madeline, you are lovely. An old expression says the eyes are the windows of the soul. Your eyes radiate your depth and spirituality. Your smiles melt me and reveal God's loving and amazing grace. Never, never change Maddie.
Your grace and charming personality immediately popped to mind when I heard this Frank Sinatra classic today.
Get some good sleep tonight, Maddie. I'll see you in the morning.
I love you, precious!
You're smart and spunky, essential qualities for the battle you've been fighting! Your Mommy & Daddy share these qualities, it helped them get you the best medical care in the world and to ask insightful, probing questions.
Maddie, you amaze me! You always muster a smile, often lots of them, and giggles too, even when you feel miserable due to the side effects of your treatment. You wrinkle your nose, amuse me with your silly expressions, and teach me important life lessons like the importance of playing in a bath.
Madeline, you are lovely. An old expression says the eyes are the windows of the soul. Your eyes radiate your depth and spirituality. Your smiles melt me and reveal God's loving and amazing grace. Never, never change Maddie.
Your grace and charming personality immediately popped to mind when I heard this Frank Sinatra classic today.
Get some good sleep tonight, Maddie. I'll see you in the morning.
I love you, precious!
No fooling
Dear Madeline,
I'm so happy that the weekend is finally upon us. I'm not sure if the nurses were pulling an April Fools prank on us or not, but they told us that one of the machines - the only they've used for you - was not working properly and that they almost called us to come in for a 6:30 AM treatment instead of an 8:30 AM treatment. Were they kidding? They did indeed have you get your treatment on a different machine, so who knows? That would have been one prank for which we'd not have been so thrilled to be on the receiving end.
You sailed through radiation treatment this morning, the nurse "de-accessed" your port, and when you woke up and finished chugging on that bottle of yours you flashed everyone some huge smiles. I cannot begin to tell you how relieved I am that your radiation treatments are almost at an end. The clock cannot strike 10 AM on Monday fast enough. When it does, we'll do a victory lap down in "L2" of the Weinberg Building, sprint over to strike that end-of-treatment bell, blow everyone a big, cartoonish kiss, and scram. You've weathered this treatment so well so far, but I'd be lying to you if I said I still wasn't worried about the long-term side effects.
I'm so happy that the weekend is finally upon us. I'm not sure if the nurses were pulling an April Fools prank on us or not, but they told us that one of the machines - the only they've used for you - was not working properly and that they almost called us to come in for a 6:30 AM treatment instead of an 8:30 AM treatment. Were they kidding? They did indeed have you get your treatment on a different machine, so who knows? That would have been one prank for which we'd not have been so thrilled to be on the receiving end.
You sailed through radiation treatment this morning, the nurse "de-accessed" your port, and when you woke up and finished chugging on that bottle of yours you flashed everyone some huge smiles. I cannot begin to tell you how relieved I am that your radiation treatments are almost at an end. The clock cannot strike 10 AM on Monday fast enough. When it does, we'll do a victory lap down in "L2" of the Weinberg Building, sprint over to strike that end-of-treatment bell, blow everyone a big, cartoonish kiss, and scram. You've weathered this treatment so well so far, but I'd be lying to you if I said I still wasn't worried about the long-term side effects.
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