Well, my little Mr. may not be considered a champion right now in some circles.
He can't run as well as kids his age. The vincristine and months of other chemo have taken care of that for now.
His hair certainly doesn't set any records for growing in the fastest. Yes, we're still very bald.
He doesn't know many of his letters or numbers. Well, that one has nothing to do with leukemia and everything to do with the fact that if it doesn't involve a truck or car - he's not interested.
He's not "in" to sharing. Haven't had to do that for months and months.
He doesn't eat his vegetables, he doesn't eat his fruit. Heck, he may not even eat a meal-unless a chocolate bar counts.
He is a champion at taking his medicine though......
Bitter, yucky tasting, daily chemo of 6MP, weekly methotrexate, 5 day bursts of prednisone and weekend bouts of twice daily bactrim are no match for the following recipe, a glass of gingerale and The Master Medicine Taker.
crush the pill(s) , dilute with 3 ml water, add strawberry syrup to total 2 tsp
I get tired of mixing up the meds and I complain; but Carson takes them like a champ EVERY time with NO complaints. Two sips and two seconds...he is done and back to playing.
In our circle, he's a champion.
Showing posts with label Food. Show all posts
Showing posts with label Food. Show all posts
Monday, May 10, 2010
Saturday, August 1, 2009
The New Normal
Day 21 of 1,278
Carson continues to lounge around the house. His normally pleasant demeanor appears every now and then...but usually NOT when people visit. (Sorry folks!) He did perk up for a brief bit when his friend Andy came to visit today. But only briefly.
Carson's cheeks continue to grow by the day. You know how when kids take and hold a big breath of air and their cheeks puff out? That's Carson, except he looks like that all the time. (It's actually very cute.) He also still has his hair, although it might be a tad bit thinner. (We're not sure if it's thinner from the chemo, or if we're just looking at it more closely than ever before.)
Carson contemplates how he can pocket Andy's toy truck. But Andy is on to him!
We are all honing our skills as short order cooks. (Look out Hell's Kitchen!) We trip over each other, running at breakneck speed from one side of the kitchen to the other to satisfy the Czar's latest craving. But the cravings just keep on coming. Today, it went something like this:
Of course, with all this food in the house, it's not easy for the rest of us...especially me, the human garbage can. There's always something cooking...some sweet smelling aroma floating through the air. It's tough resisting the urge to eat your way through the day!
Carson is still tired, but was at least more talkative today...which is a good sign he's feeling a little better. He went on a ride in the car (to the drive thru at McDs), and he talked the entire time.
If we could get the rest of the body feeling as good as the jaw muscle, I think he'd be in really good shape!
This evening Carson wanted to go for a ride in the stroller down to the bike trail. This wasn't just to go to the bike trail, but rather to see the fire station which is down right next to the bike trail. Our timing couldn't have been better. As soon as we got there the firemen pulled one of the fire trucks around back to wash it. And then they tested the chain saws! And then one of the ambulances got a call! Carson was absolutely beside himself.
Is there better entertainment for a 3 year-old boy?? Thankfully they didn't know we would have PAID to watch this!
For Jennifer and I, we are trying to get our lives back to "normal". Some things have not changed. For instance, we went on a six-mile run this morning. We are still slow. I went out to Fountainhead to ride the mountain bike trails earlier in the week. Yeah, I still stink. We gave the dogs a bath. And we still wonder, "Where the heck does all that hair come from?"
It's not the same as the normal before leukemia, but at least some things haven't changed. :-)
Monday is round four of chemo. Go Carson!!
Paul
Carson continues to lounge around the house. His normally pleasant demeanor appears every now and then...but usually NOT when people visit. (Sorry folks!) He did perk up for a brief bit when his friend Andy came to visit today. But only briefly.
Carson's cheeks continue to grow by the day. You know how when kids take and hold a big breath of air and their cheeks puff out? That's Carson, except he looks like that all the time. (It's actually very cute.) He also still has his hair, although it might be a tad bit thinner. (We're not sure if it's thinner from the chemo, or if we're just looking at it more closely than ever before.)
Carson contemplates how he can pocket Andy's toy truck. But Andy is on to him!We are all honing our skills as short order cooks. (Look out Hell's Kitchen!) We trip over each other, running at breakneck speed from one side of the kitchen to the other to satisfy the Czar's latest craving. But the cravings just keep on coming. Today, it went something like this:
- Grilled cheese sandwich (x2)
- Peanut butter and jelly sandwich
- Pancakes (morning and evening)
- Hot dog (x2..or was it 3?)
- Chicken nuggets and fries (McD's)
- Fruit snacks (x3)
- Chocolate (after morning and evening meds)
- Bread - just plain
Of course, with all this food in the house, it's not easy for the rest of us...especially me, the human garbage can. There's always something cooking...some sweet smelling aroma floating through the air. It's tough resisting the urge to eat your way through the day!
Carson is still tired, but was at least more talkative today...which is a good sign he's feeling a little better. He went on a ride in the car (to the drive thru at McDs), and he talked the entire time.
If we could get the rest of the body feeling as good as the jaw muscle, I think he'd be in really good shape!
This evening Carson wanted to go for a ride in the stroller down to the bike trail. This wasn't just to go to the bike trail, but rather to see the fire station which is down right next to the bike trail. Our timing couldn't have been better. As soon as we got there the firemen pulled one of the fire trucks around back to wash it. And then they tested the chain saws! And then one of the ambulances got a call! Carson was absolutely beside himself.
Is there better entertainment for a 3 year-old boy?? Thankfully they didn't know we would have PAID to watch this!
For Jennifer and I, we are trying to get our lives back to "normal". Some things have not changed. For instance, we went on a six-mile run this morning. We are still slow. I went out to Fountainhead to ride the mountain bike trails earlier in the week. Yeah, I still stink. We gave the dogs a bath. And we still wonder, "Where the heck does all that hair come from?"
It's not the same as the normal before leukemia, but at least some things haven't changed. :-)
Monday is round four of chemo. Go Carson!!
Paul
Sunday, July 26, 2009
Praying for Monday
Day 15 of 1,278
It was pretty slow today. Carson is slightly more upbeat than yesterday, but overall still lethargic. He donned his surgical mask and made it out of the room a couple of times, but only briefly. Most of the day was spent on the pull out bed (which he prefers over the hospital bed) surrounded by his favorite foods. Although the feeding frenzy subsided slightly, he still did some damage. The boy can eat!
"After my chicken nuggets and fries, can I have some raisins, a donut, and some popcorn? Chop chop!" Carson submits his after-dinner dessert order.
The steroids continue to drive his food cravings and fashion his "chipmunk" cheeks (see photo). Today he had Baja Fresh chips and rice for breakfast. Of course, I broke out the hot sauce and helped him with the chips. You know, now that I think about it, maybe that wasn't the steroids...the Baja Fresh craving was probably just a hereditary thing. But he did have a brief craving for...of all things...raisins. Now THAT has to be the steroids because it's just too weird.
(If I have offended any raisin lovers out there, please understand it's not intentional. Raisins just aren't our thing. Sorry!)
By the end of the day, however, we were off Baja Fresh and on to other things...like fries from Wendy's. And it HAD to be Wendy's. I never knew he was such a fry connoisseur, but Wendy's it is!
The important news of the day is that we are praying for a good day tomorrow. We are not sure of the exact time of the procedure, but are hoping that it is early in the morning. The bone marrow test at this stage is generally viewed with some significance as it is an important indicator of how the treatment is going. Please pray Carson's bone marrow is clear, the chemo goes smoothly, and he is comfortable.
I know God is omnipotent and can clear Carson's bone marrow at any stage. But, if I can weigh in here, my prayer is that He just go ahead and clear it now. Call me selfish, but I'd prefer NOT to wait go with a more dramatic miracle. Clearing his bone marrow now is big enough of a miracle for me.
The full bone marrow results won't be back until later on Tuesday. We will post results as soon as we know them.
Thanks to everyone for the tremendous love, support, and prayers.
Go Carson!!!
Paul.
P.S. A big thank you to Lori for the flowers. Jennifer loved them so much she let me have a pillow to use in the doghouse. (Guys, make a note, ALWAYS get your wife an anniversary card!)
It was pretty slow today. Carson is slightly more upbeat than yesterday, but overall still lethargic. He donned his surgical mask and made it out of the room a couple of times, but only briefly. Most of the day was spent on the pull out bed (which he prefers over the hospital bed) surrounded by his favorite foods. Although the feeding frenzy subsided slightly, he still did some damage. The boy can eat!
"After my chicken nuggets and fries, can I have some raisins, a donut, and some popcorn? Chop chop!" Carson submits his after-dinner dessert order.The steroids continue to drive his food cravings and fashion his "chipmunk" cheeks (see photo). Today he had Baja Fresh chips and rice for breakfast. Of course, I broke out the hot sauce and helped him with the chips. You know, now that I think about it, maybe that wasn't the steroids...the Baja Fresh craving was probably just a hereditary thing. But he did have a brief craving for...of all things...raisins. Now THAT has to be the steroids because it's just too weird.
(If I have offended any raisin lovers out there, please understand it's not intentional. Raisins just aren't our thing. Sorry!)
By the end of the day, however, we were off Baja Fresh and on to other things...like fries from Wendy's. And it HAD to be Wendy's. I never knew he was such a fry connoisseur, but Wendy's it is!
The important news of the day is that we are praying for a good day tomorrow. We are not sure of the exact time of the procedure, but are hoping that it is early in the morning. The bone marrow test at this stage is generally viewed with some significance as it is an important indicator of how the treatment is going. Please pray Carson's bone marrow is clear, the chemo goes smoothly, and he is comfortable.
I know God is omnipotent and can clear Carson's bone marrow at any stage. But, if I can weigh in here, my prayer is that He just go ahead and clear it now. Call me selfish, but I'd prefer NOT to wait go with a more dramatic miracle. Clearing his bone marrow now is big enough of a miracle for me.
The full bone marrow results won't be back until later on Tuesday. We will post results as soon as we know them.
Thanks to everyone for the tremendous love, support, and prayers.
Go Carson!!!
Paul.
P.S. A big thank you to Lori for the flowers. Jennifer loved them so much she let me have a pillow to use in the doghouse. (Guys, make a note, ALWAYS get your wife an anniversary card!)
Friday, July 24, 2009
Feeling Hungry, Feeling Good!
Day 13 of 1,278
Carson woke up at 6 this morning and, out of the blue, proclaimed, "I like Baja Fresh!!" Just in case there was any doubt that he was my child, now we know. Yup, he's mine.
Actually this wasn't the first time he woke up talking about food. At 3 am he woke up and had some Honey Nut Cheerios followed by a small cup of M&Ms. Not bad for a midnight snack, huh? (Before we get chastised for how unhealthy this is, I would like to point out that this is a vast improvement over the previous night's snack - donuts!)
Unfortunately we didn't have anything from Baja Fresh on hand when he woke up at 6, but that didn't slow him down. He laid around for an hour then went on a food rampage. I am not kidding when I say he spent the next four hours grazing on everything in sight. It went something like this:
Carson gets his fill of chips and rice from Baja Fresh before starting in on the basket of cookies! Note the puffy cheeks starting to form. (Side effect of the heavy steroids.)
So much effort went into eating that Carson got really tired and took a 3 hour nap. (Now that's a blessing!) This was the longest nap he's taken since being diagnosed.
Medical Update:
Carson is feeling REALLY good today.
-Paul and Jennifer
Carson woke up at 6 this morning and, out of the blue, proclaimed, "I like Baja Fresh!!" Just in case there was any doubt that he was my child, now we know. Yup, he's mine.
Actually this wasn't the first time he woke up talking about food. At 3 am he woke up and had some Honey Nut Cheerios followed by a small cup of M&Ms. Not bad for a midnight snack, huh? (Before we get chastised for how unhealthy this is, I would like to point out that this is a vast improvement over the previous night's snack - donuts!)
Unfortunately we didn't have anything from Baja Fresh on hand when he woke up at 6, but that didn't slow him down. He laid around for an hour then went on a food rampage. I am not kidding when I say he spent the next four hours grazing on everything in sight. It went something like this:
- Honey Nut Cheerios (again)
- M&Ms (again)
- Cheetos
- Egg Whites
- Pancake
- Popcorn
- Banana
- South Beach protein bar
- Toast
- Pizza
- Sun Chips (Cheddar)
- Hot Tamales (just 2 pieces)
- Gatorade (2 cans)
- Ginger Ale
Carson gets his fill of chips and rice from Baja Fresh before starting in on the basket of cookies! Note the puffy cheeks starting to form. (Side effect of the heavy steroids.)So much effort went into eating that Carson got really tired and took a 3 hour nap. (Now that's a blessing!) This was the longest nap he's taken since being diagnosed.
Medical Update:
Carson is feeling REALLY good today.
- blood work: still holding steady at 0% leukemia in the blood! Platelets and hemoglobin still OK but on the low side, no transfusions required yet though.
- energy: the monkey is back - he is climbing in/out/on the bed, on the chairs, etc. This is something he hasn't done since we arrived here at the hospital.
- mouth: moving constantly - it is either eating or talking or squealing or laughing
-Paul and Jennifer
Monday, July 20, 2009
Filling the Bottomless Pit
Day 9 of 1,278
Just a quick note to thank everyone for the words of encouragement. Carson blazed through the procedures this morning with flying colors. We've been back in the room now for a couple of hours and haven't heard one complaint about pain from the bone marrow or spinal fluid samples. Like last week, the doctors also treated the spinal fluid with chemo.
Back in the room Carson had his yucky oral steroids and then had his chemo treatment. (What a trooper!) Again, there were no apparent adverse reactions. He is taking everything in stride. All I can say is he must get this from his mother's side of the family!
Carson's appetite still rules the day. He woke up before 5 this morning asking for pasta...which is what we were having when he fell asleep after 11 the night before! Unfortunately I couldn't give him anything...doctor's orders. He eventually went back to sleep, only to wake up at 7, absolutely famished! The hours between 7 and 10 - when the procedure started and they sedated him - were the worst. He was screaming out for food the entire time...something I'm sure he gets from MY side of the family!
Once he was awake and we were back in the room he ate like a trucker. His little mouth was chewing nonstop for over an hour!
Just a quick note to thank everyone for the words of encouragement. Carson blazed through the procedures this morning with flying colors. We've been back in the room now for a couple of hours and haven't heard one complaint about pain from the bone marrow or spinal fluid samples. Like last week, the doctors also treated the spinal fluid with chemo.
Back in the room Carson had his yucky oral steroids and then had his chemo treatment. (What a trooper!) Again, there were no apparent adverse reactions. He is taking everything in stride. All I can say is he must get this from his mother's side of the family!
Carson's appetite still rules the day. He woke up before 5 this morning asking for pasta...which is what we were having when he fell asleep after 11 the night before! Unfortunately I couldn't give him anything...doctor's orders. He eventually went back to sleep, only to wake up at 7, absolutely famished! The hours between 7 and 10 - when the procedure started and they sedated him - were the worst. He was screaming out for food the entire time...something I'm sure he gets from MY side of the family!
Once he was awake and we were back in the room he ate like a trucker. His little mouth was chewing nonstop for over an hour!
After eating the doctor came in to say she took a quick look at the bone marrow. The full results will be back tomorrow, but in the preliminary look she said the marrow looked really good...she couldn't definitively see any leukemia. What does this mean? Looks like the chemo is kicking butt! We'll share the full results when we have those back tomorrow.
Go Carson!!!
Paul.
P.S. We love the comments, please keep them coming!
Go Carson!!!
Paul.
P.S. We love the comments, please keep them coming!
Friday, July 17, 2009
Preteen Help
Day 7 of 1,278.
So today we are going to answer the question: Just how much help can an 11 year-old be? Sounds like an easy question, right? Wrong. Einstein once set out answer this age old question. After being faced with so many unknowns he decided it would be easier to solve the mysteries of physics. At least that's what I read on Wiki.
As a father of a preteen I have witnessed first-hand how they can turn into zombies in front of the TV. (I'm sure I never was and am still not that way!) They will sacrifice life and limb for an Xbox, Wii, or a mobile phone...particularly the much coveted IPhone. And speaking of....is there a preteen out there who realizes that in addition to sending text messages mobile phones can be used to actually TALK to someone? But I digress. Perhaps that is a topic for another day.
Today Francesca left for Texas to spend a few weeks with family. I'm confident she will enjoy the succulent tastes of the finest Tex-Mex cuisine and partake in endless Xbox sessions with her cousins. That said, she will be sorely missed here. Despite her young age, Francesca has been a tremendous help to us and Carson. She has been here to lend a helping hand with the endless list of things to find, fix, and fetch. In addition to her title of Chief Helper, she has been the "Entertainment Director" for her little brother, helping him pass the hours and days here in the hospital.
Francesca's been a real trooper this past week and keeping up without her will be difficult. But now it's time to go and have some fun...have a great vacation Francesca!!
On the medical front:
Things are fairly quiet. Carson's numbers continue in to improve and the doctors are happy. (Like I said before...we like making the doctors happy!!) We had thought he would need a transfusion today, but the numbers came back and indicated we could hold off another day.
The steroids have turned him into a bottomless pit. He is constantly talking about food and asking for something to eat. Here's what this morning's menu looked like:
The Kraft EasyMac poster child.
I can't say enough about the people that have brought food for the family and presents for Carson. As I've said before, having a few minutes to talk with someone else is the best legal pick-me-up around. Well...Carson says it's really a tie between that and getting some new car toys. I guess it's all perspective. The comments on the blog and the emails have been a great encouragement. Please keep them coming!
Friends and Toys - is there a greater combo?
We are grateful that he is feeling so well, but anxious about what the coming weeks will bring as the cumulative effects of chemo become prominent. The road ahead is a rough one. It won't be easy. Please keep our little guy in your prayers!!
Paul.
So today we are going to answer the question: Just how much help can an 11 year-old be? Sounds like an easy question, right? Wrong. Einstein once set out answer this age old question. After being faced with so many unknowns he decided it would be easier to solve the mysteries of physics. At least that's what I read on Wiki.
As a father of a preteen I have witnessed first-hand how they can turn into zombies in front of the TV. (I'm sure I never was and am still not that way!) They will sacrifice life and limb for an Xbox, Wii, or a mobile phone...particularly the much coveted IPhone. And speaking of....is there a preteen out there who realizes that in addition to sending text messages mobile phones can be used to actually TALK to someone? But I digress. Perhaps that is a topic for another day.
Today Francesca left for Texas to spend a few weeks with family. I'm confident she will enjoy the succulent tastes of the finest Tex-Mex cuisine and partake in endless Xbox sessions with her cousins. That said, she will be sorely missed here. Despite her young age, Francesca has been a tremendous help to us and Carson. She has been here to lend a helping hand with the endless list of things to find, fix, and fetch. In addition to her title of Chief Helper, she has been the "Entertainment Director" for her little brother, helping him pass the hours and days here in the hospital.
Francesca's been a real trooper this past week and keeping up without her will be difficult. But now it's time to go and have some fun...have a great vacation Francesca!!
On the medical front:
Things are fairly quiet. Carson's numbers continue in to improve and the doctors are happy. (Like I said before...we like making the doctors happy!!) We had thought he would need a transfusion today, but the numbers came back and indicated we could hold off another day.
The steroids have turned him into a bottomless pit. He is constantly talking about food and asking for something to eat. Here's what this morning's menu looked like:
- a hot dog (the whole thing) - this was BEFORE breakfast
- a hot dog bun (a SECOND bun, that is)
- a waffle
- mac-n-cheese
- two small sacks of Cheetos
- two brownies
The Kraft EasyMac poster child.I can't say enough about the people that have brought food for the family and presents for Carson. As I've said before, having a few minutes to talk with someone else is the best legal pick-me-up around. Well...Carson says it's really a tie between that and getting some new car toys. I guess it's all perspective. The comments on the blog and the emails have been a great encouragement. Please keep them coming!
Friends and Toys - is there a greater combo?We are grateful that he is feeling so well, but anxious about what the coming weeks will bring as the cumulative effects of chemo become prominent. The road ahead is a rough one. It won't be easy. Please keep our little guy in your prayers!!
Paul.
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