288 days since diagnosis.
We spent the weekend at a swim meet with Francesca. What? Did you think we'd actually do something like take a short vacation or something?!?
Another swim meet?
Actually, this was the first long course swim meet of the season. It was an "open meet." For those not familiar with swimming lingo, the term "open meet" loosely translates to "an extremely crowded and frustratingly-long mandatory gathering where your child swims for a cumulative of four minutes." In reality it was a little UNDER four minutes. But, hey, who's counting?
Francesca swam on Saturday and Sunday and the good news is she did VERY well. With her great times, we're hoping we don't have to attend any more open meets. Thank you, Francesca!!
Working on the Car
On Sunday, Carson and I took the front tire off the Acura to tend to a squeaky brake. We jacked the car up, took off the tire, and took the brake caliper off. We got to see the shocks up close and even pushed a dent out of the fender. For Carson it was like a dream. Now he wants to open an auto repair shop!
Carson still goes though all kinds of food and is putting on weight. Baja Fresh is still a personal fave. He rides his bike every chance he gets and his thin, frail legs are turning into the powerful, strong legs he used to have right before our eyes.
We are back to the clinic on Thursday. Please pray for continued good health and good blood counts on Thursday!
Paul.
Monday, April 26, 2010
Thursday, April 22, 2010
Continue On
Day 284 and Still Fighting....
We went to the clinic today for a counts check and perhaps some explanation as to why Carson's hemoglobin dropped. What we got were his counts checked and no real explanation as to what happened with the hemoglobin.
What does that mean? It means we will begin again with same dosages of both his weekly and daily chemo and go again to the clinic in a week to see what is happening. It will also be time for our once a month IV push of vincristine and another burst of steroids.
As for the hemoglobin, the current thinking is that he is either sensitive to the oral chemo, or he perhaps got a small infection that caused the hemoglobin to drop. They will draw blood from his port next time and do more tests. If his hemoglobin drops again, and it turns out he didn't have an infection last time, the doctors will consider dropping his dosage. Dropping the dosage is not really something they'd like to do though. If he's getting less medicine, it is not ideal for keeping cancer away and gone for good.
So, for now, we will continue on and see what develops - next clinic visit on Thursday. As usual, the blood will dictate our next course of action.
In the meantime, we are keeping a photo record of Carson and his hair (or lack thereof...) and rejoicing that Carson is eating better, gaining weight and feeling great. He gained 1 pound this week and actually ate some fruit and vegetables! He now weighs 1 pound more than he did at diagnosis.
Here is the first installment of our photo record.....tune in this time next week for an updated photo.
Nothing much to see in regards to hair-just some peach fuzz and a happy boy!
-Jennifer
We went to the clinic today for a counts check and perhaps some explanation as to why Carson's hemoglobin dropped. What we got were his counts checked and no real explanation as to what happened with the hemoglobin.
What does that mean? It means we will begin again with same dosages of both his weekly and daily chemo and go again to the clinic in a week to see what is happening. It will also be time for our once a month IV push of vincristine and another burst of steroids.
As for the hemoglobin, the current thinking is that he is either sensitive to the oral chemo, or he perhaps got a small infection that caused the hemoglobin to drop. They will draw blood from his port next time and do more tests. If his hemoglobin drops again, and it turns out he didn't have an infection last time, the doctors will consider dropping his dosage. Dropping the dosage is not really something they'd like to do though. If he's getting less medicine, it is not ideal for keeping cancer away and gone for good.
So, for now, we will continue on and see what develops - next clinic visit on Thursday. As usual, the blood will dictate our next course of action.
In the meantime, we are keeping a photo record of Carson and his hair (or lack thereof...) and rejoicing that Carson is eating better, gaining weight and feeling great. He gained 1 pound this week and actually ate some fruit and vegetables! He now weighs 1 pound more than he did at diagnosis.
Here is the first installment of our photo record.....tune in this time next week for an updated photo.
Nothing much to see in regards to hair-just some peach fuzz and a happy boy!-Jennifer
Sunday, April 18, 2010
Relay for Life
My friend and I started a Relay For Life Team to raise money for the American Cancer Society. They need the money to find a cure for cancer. To help them raise money, we are organizing a team to participate in a 24-hour walk on 22 - 23 May.
We are also selling luminaries to celebrate those who have fought cancer. These candles will light the track where we will be having our walk.
The easiest way to donate or buy a luminary is to click HERE and go to our fund raising page at the American Cancer Society. With a click of a button you can DONATE or buy a luminary online. It's that easy!
If you have questions or would like to send your donation by mail, you can email me at king100fly@gmail.com.
THANK YOU!!!! Francesca
We are also selling luminaries to celebrate those who have fought cancer. These candles will light the track where we will be having our walk.
The easiest way to donate or buy a luminary is to click HERE and go to our fund raising page at the American Cancer Society. With a click of a button you can DONATE or buy a luminary online. It's that easy!
If you have questions or would like to send your donation by mail, you can email me at king100fly@gmail.com.
THANK YOU!!!! Francesca
Friday, April 16, 2010
Not As Expected
The other day Jennifer wrote that she expected to continue our meds at home following the counts check at the clinic. Of course, she should know better than to EXPECT anything ESPECIALLY change. Today's quick visit at the clinic turned into a not-so-quick escapade at the hospital. Ugh.
Hemoglobin Woes:
The bloodwork from Carson's finger prick seemed...well, as the doctor put it, "odd". Carson's hemoglobin was low and it shouldn't be. So we went to plan B - get a sample from his port - but the results from that, an hour and a half later, were actually a little worse than the finger prick.
Why the low hemoglobin? It could be a result of lingering effects from delayed intensification or an unusual reaction to his current medication. They drew some more blood to send out for additional tests.
Because it was late in the day and the weekend was looming, we were given our marching orders: Don't pass go. Head directly to the hospital for a blood transfusion.
Back to our Second Home:
We arrived at the hospital around 4 pm...it was a lot like going to a school reunion. We visited favorite hangouts - the helicopter bridge, play yard, craft room (even though we don't do crafts!). Carson claimed his "hog" and rode around the hallways running people over. We were there over shift change and got to catch up with many of the usual nurses. Nurse Brooke even made Carson a Batman cape out of a disposable gown. Carson wore the cape as he rode the "hog" and it flapped in the wind. He was duly impressed.
The transfusion itself was smooth and we were finally set free a little after 9 pm. I pretty sure that makes this our quickest hospital visit ever. We'll take it!
It was nice to see everyone today. But it's even nicer to have everyone at home tonight.
An Important Reminder:
Every time we visit the hospital we meet other families fighting a similar battle as ours. Some are new acquaintances, some are old. Some seem to have an easier fight, some harder. For one family in particular, the fight has ended. Please keep them all in your prayers.
Paul.
Hemoglobin Woes:
The bloodwork from Carson's finger prick seemed...well, as the doctor put it, "odd". Carson's hemoglobin was low and it shouldn't be. So we went to plan B - get a sample from his port - but the results from that, an hour and a half later, were actually a little worse than the finger prick.
Why the low hemoglobin? It could be a result of lingering effects from delayed intensification or an unusual reaction to his current medication. They drew some more blood to send out for additional tests.
Because it was late in the day and the weekend was looming, we were given our marching orders: Don't pass go. Head directly to the hospital for a blood transfusion.
Back to our Second Home:
We arrived at the hospital around 4 pm...it was a lot like going to a school reunion. We visited favorite hangouts - the helicopter bridge, play yard, craft room (even though we don't do crafts!). Carson claimed his "hog" and rode around the hallways running people over. We were there over shift change and got to catch up with many of the usual nurses. Nurse Brooke even made Carson a Batman cape out of a disposable gown. Carson wore the cape as he rode the "hog" and it flapped in the wind. He was duly impressed.
The transfusion itself was smooth and we were finally set free a little after 9 pm. I pretty sure that makes this our quickest hospital visit ever. We'll take it!
It was nice to see everyone today. But it's even nicer to have everyone at home tonight.
An Important Reminder:
Every time we visit the hospital we meet other families fighting a similar battle as ours. Some are new acquaintances, some are old. Some seem to have an easier fight, some harder. For one family in particular, the fight has ended. Please keep them all in your prayers.
Paul.
Tuesday, April 13, 2010
New York, Niagara, Maintenance
I Love New York...Sort Of!
For those of you that have wondered, YES, Francesca made it to Rochester to swim in the Zone Meet over Spring Break. She had a blast being out on her own, riding the bus with the team, and wearing all the cool gear they gave them. Unfortunately, her swimming of the 200 fly did not reflect how much fun she was having. She added time, and did not make the finals of her event. It appears that nerves got the better of her, as she informed me when she finished swimming that she "felt like she was going to throw up". It still was a good experience for her though. She'll be better equipped to recognize nervousness and deal with it at her next big meet.
Swimmer Girls Take Over Rochester!
With Francesca's swim over, and 1 1/2 days left of the swim meet, Nona and I went exploring in and around the Rochester area. We strolled along the shores of Lake Ontario, we visited the home of Susan B. Anthony and George Eastman (founder of Kodak Eastman), visited the Rochester High Falls area and shopped till we dropped.
We picked up Francesca when the swim meet was over on Saturday evening and headed for Niagara Falls. Easter morning, we visited The Falls. The weather was beautiful and we were amazed at every turn.
Nona and Francesca at The Falls (American Side). Happy Easter!
In the Meantime....
Carson is enjoying life on maintenance. His energy and strength are increasing every day, he continues to talk non stop and he has quit napping. Luckily, we can have some play dates with some of his buds, so it is not just the family that has to try and keep up with him!
We head back to the clinic on Friday to check counts and expect to continue our medications at home just as we have been doing for the last two weeks.
Carson and his bud Riley take a break from playing for a quick pic.
Riley brought Carson a great toy from the movie CARS - he loves it! Thanks Riley!
For those of you that have wondered, YES, Francesca made it to Rochester to swim in the Zone Meet over Spring Break. She had a blast being out on her own, riding the bus with the team, and wearing all the cool gear they gave them. Unfortunately, her swimming of the 200 fly did not reflect how much fun she was having. She added time, and did not make the finals of her event. It appears that nerves got the better of her, as she informed me when she finished swimming that she "felt like she was going to throw up". It still was a good experience for her though. She'll be better equipped to recognize nervousness and deal with it at her next big meet.
Swimmer Girls Take Over Rochester!With Francesca's swim over, and 1 1/2 days left of the swim meet, Nona and I went exploring in and around the Rochester area. We strolled along the shores of Lake Ontario, we visited the home of Susan B. Anthony and George Eastman (founder of Kodak Eastman), visited the Rochester High Falls area and shopped till we dropped.
We picked up Francesca when the swim meet was over on Saturday evening and headed for Niagara Falls. Easter morning, we visited The Falls. The weather was beautiful and we were amazed at every turn.
Nona and Francesca at The Falls (American Side). Happy Easter!In the Meantime....
Carson is enjoying life on maintenance. His energy and strength are increasing every day, he continues to talk non stop and he has quit napping. Luckily, we can have some play dates with some of his buds, so it is not just the family that has to try and keep up with him!
We head back to the clinic on Friday to check counts and expect to continue our medications at home just as we have been doing for the last two weeks.
Carson and his bud Riley take a break from playing for a quick pic.Riley brought Carson a great toy from the movie CARS - he loves it! Thanks Riley!
Wednesday, April 7, 2010
Be The Match
Today I finished up the process of getting listed on the National Marrow Donor Program Registry. In all, it took about 20 minutes of my time - and not all at once. It took 10 minutes to sign up on line, then 10 minutes to swab the inside of my cheek 4 times and put the swabs back in the postage paid envelope that was sent a week later. That's it!
I've seen pleas for people to join the registry before and I never realized that the process would be so easy. I put it out of my mind, thinking I was too busy. I didn't have time...someone else would do it. Now I've learned. Who will do it if I don't? Am I really that caught up in my own life (and seemingly important activities) that I can't spare 20 minutes of my time? My time is not so precious that I can't use a minuscule amount of it to perform a simple act that may save a life. Yes, you are right. I must be hit over the head in order to learn things!
Carson doesn't need a bone marrow transplant right now, but there are plenty of other people with various cancers and conditions that do need it. They need it sooner rather than later.
One of those people is Emily. She is the sister of Francesca's teacher, Mr. Kelly, who lives in the Boston area. She was diagnosed with AML (Acute Myeloid Leukemia) in November. She began treatment immediately, but they are already looking for a bone marrow donor, and hoping. That's right, she doesn't have a match yet. Her brothers and sisters are not a good match. She needs marrow from someone else. That someone could be YOU or ME.
So, please, take the next few minutes to start the registry process. Click HERE to start.
You will give away 20 minutes of your time, but you might help someone else gain a lot more!
-Jennifer
I've seen pleas for people to join the registry before and I never realized that the process would be so easy. I put it out of my mind, thinking I was too busy. I didn't have time...someone else would do it. Now I've learned. Who will do it if I don't? Am I really that caught up in my own life (and seemingly important activities) that I can't spare 20 minutes of my time? My time is not so precious that I can't use a minuscule amount of it to perform a simple act that may save a life. Yes, you are right. I must be hit over the head in order to learn things!
Carson doesn't need a bone marrow transplant right now, but there are plenty of other people with various cancers and conditions that do need it. They need it sooner rather than later.
One of those people is Emily. She is the sister of Francesca's teacher, Mr. Kelly, who lives in the Boston area. She was diagnosed with AML (Acute Myeloid Leukemia) in November. She began treatment immediately, but they are already looking for a bone marrow donor, and hoping. That's right, she doesn't have a match yet. Her brothers and sisters are not a good match. She needs marrow from someone else. That someone could be YOU or ME.
So, please, take the next few minutes to start the registry process. Click HERE to start.
You will give away 20 minutes of your time, but you might help someone else gain a lot more!
-Jennifer
Saturday, April 3, 2010
High Couts = Start of Maintenance and Trip to Circus
Yesterday, day 265 since diagnosis, Caron's counts where high enough to begin the final phase of treatment - Maintenance. Yeah!!
The days of heavy chemo are behind us and we are looking forward to returning to a more "normal" life. "Normal", of course, has a new meaning.
Maintenance - Easy in some ways, not in others:
Maintenance started with a spinal tap and chemo flush. If you are scratching your head thinking, "I thought he said the days of chemo were behinds us." The days of HEAVY chemo are behind us. Small doses, however, are here to stay.
Maintenance will be easier on Carson physically...not necessarily easier on Jennifer and I. Here's what the 85-day cycle will look like:
Methotrexate (spinal flush) - Start of every 85 day cycle
Vincristine (IV chemo) - Days 1, 29, and 57
Prednisone (steroid) - Days 1 - 5, 29 - 33, and 57 - 61; 2x a day
Mercaptopurine (oral chemo) - Daily, no eating before/after
Methotrexate (oral chemo) - Weekly
Bactrum (oral antibiotic) - 3 days a week; 2x a day
(I think I'm going to have to lay this all out on a Gantt chart.)
The good news is Carson's hair is already starting to grow back out.
A Little Celebration:
Last week we took Francesca and a friend to the Ringling Bros Circus. Carson had low counts and couldn't attend. Due to a technical difficulty, however, the second half of the show was cut short and we were provided tickets to a follow on show. Fast forward a week. Carson's counts are up, and he gets to go to the circus!
Carson LOVED the show. The elephants, zebras, tigers...and the world biggest collection of little people who flip/twirl/fly through the air. (Where do they get all those performers??) It was an amazing show. Oh yeah, the salty pretzels were a hit, too.
After two hours of sensory overload at the circus, Carson finally runs out of gas and crashes in the car.
Many thanks to Growing Hope for providing the tickets to the circus. Although it didn't look like Carson was going to be able to go, in the end everything worked out and he did.
Big miracles and small, we like them all.
Paul.
The days of heavy chemo are behind us and we are looking forward to returning to a more "normal" life. "Normal", of course, has a new meaning.
Maintenance - Easy in some ways, not in others:
Maintenance started with a spinal tap and chemo flush. If you are scratching your head thinking, "I thought he said the days of chemo were behinds us." The days of HEAVY chemo are behind us. Small doses, however, are here to stay.
Maintenance will be easier on Carson physically...not necessarily easier on Jennifer and I. Here's what the 85-day cycle will look like:
Methotrexate (spinal flush) - Start of every 85 day cycle
Vincristine (IV chemo) - Days 1, 29, and 57
Prednisone (steroid) - Days 1 - 5, 29 - 33, and 57 - 61; 2x a day
Mercaptopurine (oral chemo) - Daily, no eating before/after
Methotrexate (oral chemo) - Weekly
Bactrum (oral antibiotic) - 3 days a week; 2x a day
(I think I'm going to have to lay this all out on a Gantt chart.)
The good news is Carson's hair is already starting to grow back out.
A Little Celebration:
Last week we took Francesca and a friend to the Ringling Bros Circus. Carson had low counts and couldn't attend. Due to a technical difficulty, however, the second half of the show was cut short and we were provided tickets to a follow on show. Fast forward a week. Carson's counts are up, and he gets to go to the circus!
Carson LOVED the show. The elephants, zebras, tigers...and the world biggest collection of little people who flip/twirl/fly through the air. (Where do they get all those performers??) It was an amazing show. Oh yeah, the salty pretzels were a hit, too.
After two hours of sensory overload at the circus, Carson finally runs out of gas and crashes in the car.Many thanks to Growing Hope for providing the tickets to the circus. Although it didn't look like Carson was going to be able to go, in the end everything worked out and he did.
Big miracles and small, we like them all.
Paul.
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