Well, another weekend came and went; and that means two things around here. A trip to the ER and a swim meet. And that's what we did.
Carson developed a fever in the wee hours of Friday morning. Chances are good that he caught my horrible cold that gave me lots of congestion and stole my voice for 5 days. We did as usual, woke Dr. Chao up at 4AM (she is unfortunately on call every single time Carson gets sick), packed a bag and headed for INOVA Fairfax. Paul took hospital duty since my germs and my non-voice would not be welcome in the hospital.
After the boys left, it was time for Francesca to get up for the swim meet. Warm ups at 6 AM in Maryland!!
Then, we did it all again on Saturday - although a few hours later for Carson. He went back to the ER for a follow up dose of antibiotics. (Did I mention, he never ran a fever once arriving at the ER??) and Francesca went to her swim meet.
Squeeze in a visit with friends on Saturday afternoon and more swimming on Sunday and you have a normal weekend at our house!
Paul has the cold now, and Francesca appears to be getting it......I don't think those two will need to go to the ER though. My voice has returned, just in case they do.
-Jennifer
Tuesday, March 22, 2011
Thursday, March 17, 2011
Clinic, Hospital and Hair
CLINIC
Tuesday's clinic visit was fairly uneventful, except for the hour wait to see the doctor. That just happens. And now, thanks to our many visits to the hospital, we have lots of experience with waiting patiently!
Carson's ANC is still holding up and staying pretty high - it was 4100. By now, you know the next sentence I'll write, and probably the next one too. Yes, time to raise the dosages. Come back in two weeks to check again.
HOSPITAL
Today, we took the last load of toys and band aids to the hospital. Can you believe it took 3 trips in our Tahoe to get it all there? That is a nice problem to have!
Since our first visit, we've also had some cash donations and we were able to purchase an additional 53 boxes of band aids. That brings the grand total to 760 boxes!! Another nice problem to have! Although now that everything is out of my house, the hospital has that problem.
Our third trip to the hospital. The Tahoe just as packed as the first trip.
HAIR
Our friend Beth wrote us an email this week documenting her 9 year old daughter Abby's donation to Wigs for Kids. When Abby first learned of Carson's diagnosis, she began to grow her hair out. This last week she had 12 inches cut from her hair and sent off to help other kids who have lost their hair due to cancer treatment or other medical issues.
Before.......
......and after! What a cute haircut!
We continue to amazed at the examples of the goodness and compassion that arrive out of the blue and from all sorts of places. I see it so often now, why do I continue to be amazed??? I guess I am just amazed at how it keeps on coming. Over and over, one act after another, it never ends. I guess I've always imagined such kindness as a bucket, a bucket that eventually runs out. This journey has proven otherwise. It seems your kindness is a never ending chain instead! Thank you Abby for continuing that kindness chain! To see one child helping other children...WOW!!...it just melts my heart and puts a big smile on my face!
-Jennifer
Tuesday's clinic visit was fairly uneventful, except for the hour wait to see the doctor. That just happens. And now, thanks to our many visits to the hospital, we have lots of experience with waiting patiently!
Carson's ANC is still holding up and staying pretty high - it was 4100. By now, you know the next sentence I'll write, and probably the next one too. Yes, time to raise the dosages. Come back in two weeks to check again.
HOSPITAL
Today, we took the last load of toys and band aids to the hospital. Can you believe it took 3 trips in our Tahoe to get it all there? That is a nice problem to have!
Since our first visit, we've also had some cash donations and we were able to purchase an additional 53 boxes of band aids. That brings the grand total to 760 boxes!! Another nice problem to have! Although now that everything is out of my house, the hospital has that problem.
Our third trip to the hospital. The Tahoe just as packed as the first trip.HAIR
Our friend Beth wrote us an email this week documenting her 9 year old daughter Abby's donation to Wigs for Kids. When Abby first learned of Carson's diagnosis, she began to grow her hair out. This last week she had 12 inches cut from her hair and sent off to help other kids who have lost their hair due to cancer treatment or other medical issues.
Before.......
......and after! What a cute haircut!We continue to amazed at the examples of the goodness and compassion that arrive out of the blue and from all sorts of places. I see it so often now, why do I continue to be amazed??? I guess I am just amazed at how it keeps on coming. Over and over, one act after another, it never ends. I guess I've always imagined such kindness as a bucket, a bucket that eventually runs out. This journey has proven otherwise. It seems your kindness is a never ending chain instead! Thank you Abby for continuing that kindness chain! To see one child helping other children...WOW!!...it just melts my heart and puts a big smile on my face!
-Jennifer
Friday, March 11, 2011
Totals
Response to our band aid/toy drive has been SO INCREDIBLE that I had to take a load up there last week just to make some space in our living room.
Here are the totals:
707 boxes of bandaids (plus 4,000 additional bandaids from a local business)
56 Wii/PS2 Games
1,000 + toys and prizes
Thank you to all those who helped!!
This is some of what we took:
The backseats removed, the spaces in between the remaining seats filled with sacks. The Tahoe was stuffed!
And this is some of what is still left at the house, ready to be delivered next week:
Sacks of toys and bandaids litter our living room floor.
Carson delivering some of the toys to Miss Holly, his favorite Child Life Specialist!
Becky, Francesca and Miss Holly. We loaded up the cart and each of us carried bags too. We were lucky to have Becky there with another set of hands!
Of course, this did not include the band-aids that came from Leukemia and Lymphoma Society Team In Training. They collected 340 boxes which we picked up at the Honored Teammate Picnic. Go Team!!
Ambassador in the making, Carson poses with Ms. Julie and officially accepts the band aid donation from TNT.
The Honored Teammate Picnic was featured on Patch.com. Carson was pictured in two photos.
Click here to read that article.
Have a great weekend everyone!
-Jennifer
Here are the totals:
707 boxes of bandaids (plus 4,000 additional bandaids from a local business)
56 Wii/PS2 Games
1,000 + toys and prizes
Thank you to all those who helped!!
- Columbia Baptist Church Men's and Women's Bible Studies, youth group and church members
- Columbia Baptist Church Child Development Center
- Doodlehopper Toy Store and Jolie Smith
- The Leukemia and Lymphoma Society's Team in Training
- Neighbors and friends who dropped off items at our house daily
This is some of what we took:
The backseats removed, the spaces in between the remaining seats filled with sacks. The Tahoe was stuffed!And this is some of what is still left at the house, ready to be delivered next week:
Sacks of toys and bandaids litter our living room floor.
Carson delivering some of the toys to Miss Holly, his favorite Child Life Specialist!
Becky, Francesca and Miss Holly. We loaded up the cart and each of us carried bags too. We were lucky to have Becky there with another set of hands!Of course, this did not include the band-aids that came from Leukemia and Lymphoma Society Team In Training. They collected 340 boxes which we picked up at the Honored Teammate Picnic. Go Team!!
Ambassador in the making, Carson poses with Ms. Julie and officially accepts the band aid donation from TNT.The Honored Teammate Picnic was featured on Patch.com. Carson was pictured in two photos.
Click here to read that article.
Have a great weekend everyone!
-Jennifer
Friday, March 4, 2011
Happy Juice Sadness
Yesterday was the start of our 5th maintenance cycle. Time for a spinal tap. We reported to the clinic at 8:30 for the usual port access, blood work, and pre-procedure examination.
Carson's ANC was an amazing 5,000!!! That's high enough that he might actually be able to play at the McDonald's playland without getting sick......well, maybe not. Anyway, by leukemia treatment standards that ANC is way too high. More on that later.
After our exam, the main event of the day finally arrived....the happy juice! As with most other times, Carson had been asking about it since awakening that morning and this time was not any different.
The procedure went smoothly and quickly, the happy juice making Carson very, very calm and still. The part that didn't go as smoothly was afterward. As soon as Carson came around a little bit he asked "When am I going to get the happy juice?". When told that he'd already received it, and the procedure was over, he proceeded to pull his blanket over his head and sob heavily. Poor little guy, he didn't remember it at all! He didn't believe that it had been given to him!
The sobbing continued for about 20 minutes, until the happy juice wore off. Either that, or he got distracted enough with the pictures on Nona's phone (She does have pictures of old cars on there after all). Carson then enjoyed some snacks and TV while Vincristine was administered and the Pentamadine infusion started.
Now, what to do about that ANC. I was voting for the McDonald's experiment and perhaps some crawling around in mud puddles and stagnant water, but Dr.'s orders prevailed. In addition to starting our monthly round of steroids (at a higher dosage - because that boy is GROWING!), we'll start in again raising the dosages of the oral chemos - both of them. Alas, I mourn the days off from 6MP and the one crushed pill of methotrexate from a few weeks ago. The good old days!
And so, the next cycle begins. We have been in maintenance now for almost a year! Can you believe it?? God continues to protect our little guy with relatively good health - we'll deal with the dosing issues - it really could be worse. Don't I know it!
-Jennifer
Carson's ANC was an amazing 5,000!!! That's high enough that he might actually be able to play at the McDonald's playland without getting sick......well, maybe not. Anyway, by leukemia treatment standards that ANC is way too high. More on that later.
After our exam, the main event of the day finally arrived....the happy juice! As with most other times, Carson had been asking about it since awakening that morning and this time was not any different.
The procedure went smoothly and quickly, the happy juice making Carson very, very calm and still. The part that didn't go as smoothly was afterward. As soon as Carson came around a little bit he asked "When am I going to get the happy juice?". When told that he'd already received it, and the procedure was over, he proceeded to pull his blanket over his head and sob heavily. Poor little guy, he didn't remember it at all! He didn't believe that it had been given to him!
The sobbing continued for about 20 minutes, until the happy juice wore off. Either that, or he got distracted enough with the pictures on Nona's phone (She does have pictures of old cars on there after all). Carson then enjoyed some snacks and TV while Vincristine was administered and the Pentamadine infusion started.
Now, what to do about that ANC. I was voting for the McDonald's experiment and perhaps some crawling around in mud puddles and stagnant water, but Dr.'s orders prevailed. In addition to starting our monthly round of steroids (at a higher dosage - because that boy is GROWING!), we'll start in again raising the dosages of the oral chemos - both of them. Alas, I mourn the days off from 6MP and the one crushed pill of methotrexate from a few weeks ago. The good old days!
And so, the next cycle begins. We have been in maintenance now for almost a year! Can you believe it?? God continues to protect our little guy with relatively good health - we'll deal with the dosing issues - it really could be worse. Don't I know it!
-Jennifer
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