Carson is full of immuno gammaglobulins and feeling great. The infusion went smoothly and we managed to not get sick beforehand - even with a trip to King's Dominion on Saturday. (Pictures coming soon)
My cold is subsiding. Now, our only problem is the large scale paper mache project that is taking over the garage as we prepare for our church's Trunk or Treat. This better work....plan B is not an option I want to employ.
This is the kind of problem I prefer to have however.....
-Jennifer
Tuesday, October 25, 2011
Wednesday, October 19, 2011
IGg
The Clinic called yesterday to report that Carson's IGg (immuno gammaglobulin) level was low. This makes it difficult for him to fight off viruses - and of course, I'm fighting a cold.
We will return to the clinic on Monday to get an infusion.
Here's hoping we don't see the ER this weekend!
-Jennifer
We will return to the clinic on Monday to get an infusion.
Here's hoping we don't see the ER this weekend!
-Jennifer
Tuesday, October 18, 2011
It's Time Again
It was time for another clinic visit again yesterday. Time for the all important counts check, Vincristine, Pentamadine and steroids.
So here's the run down....
The counts fell, but still are too high. Carson checked in at an ANC of 3720
Vincristine and Pentamadine were administered.
Steroids were started. Time for a trip to the grocery store.
It's also time to up the oral chemos to get the counts down a bit. 6MP will increase by 25 mg and methotrexate will increase by 2.5 mg. That's it, but it will probably have a big effect - we've got a sensitive guy.
Next appointment: Halloween!
-Jennifer
So here's the run down....
The counts fell, but still are too high. Carson checked in at an ANC of 3720
Vincristine and Pentamadine were administered.
Steroids were started. Time for a trip to the grocery store.
It's also time to up the oral chemos to get the counts down a bit. 6MP will increase by 25 mg and methotrexate will increase by 2.5 mg. That's it, but it will probably have a big effect - we've got a sensitive guy.
Next appointment: Halloween!
-Jennifer
Friday, October 14, 2011
Paying Twice
We have hit a smooth spot with Carson's treatment right now.- No illnesses, no low counts (in fact they are way too high), no visits to the ER. Praise God!
Time to relax a bit? Are you kidding? As I am now finding out, getting through treatment is just the beginning of this journey. Now it is time for some major work. Time to begin Operation Carson Catch Up. You see, Carson has not only paid his cancer dues with his body, now he's paying again in other ways. He has some issues, both cognitive and physical. How much of it is a result of treatment, how much of it is a year spent doing nothing but clinic/hospital, and how much of it is a stubborn 5 year old boy is yet to be determined.
Luckily, there are some great people to help him both at school and in the community.
At school, he has an Individualized Education Program (IEP). This is the result of extensive testing he went through and a series of meetings over 4 months to determine how best to help him.
So, 4-5 times a week Carson has an extra reading group at school to work on writing, phonics and reading skills. This is in addition to the regular reading program that he participates in while attending class.
A half hour a week, Carson receives some occupational therapy at school to help him with his fine motor skills. The goal here is to make it easier for him to write.
Another half hour a week is spent receiving instruction in concentration and focus strategies - usually during a class activity.
And I should mention here, that Carson receives a lot of attention and help by his regular teachers and Special Ed teachers who are already in the classroom. Just one advantage of a small but wonderful school system!
Outside of school:
Once a week Carson sees Ms. Rachel for speech therapy where he learns social skills, strategies for retaining instructions in his working memory, use of descriptive language, and practices his processing skills (how to get the thoughts he has in his mind conveyed to someone else and how to receive instruction and carry it out.)
At home, we "have school" every night after dinner. We review how to write various letters, what sounds they make and play games to increase his memory skills. This includes weekends. We also work throughout the evening and days on issues that the speech therapist has asked us to concentrate on - remembering "who, what where", telling stories in an organized way, etc.
We have seen great progress in Carson in just a few short weeks and are very encouraged.
Earlier this summer, Carson had a round of neuropsych testing on top of the testing he went through via the school system. Results of that were quite disheartening as it seemed to say that he has definite cognitive impairments that would probably not be overcome. I am not ready to make such a judgement on a 5 year old. Just as with our cancer treatment, with God's help, we will do the best we can, we will do all that we can, and we will tell our own story. Our course in life and Carson's course in life will not be predetermined........
-Jennifer
Time to relax a bit? Are you kidding? As I am now finding out, getting through treatment is just the beginning of this journey. Now it is time for some major work. Time to begin Operation Carson Catch Up. You see, Carson has not only paid his cancer dues with his body, now he's paying again in other ways. He has some issues, both cognitive and physical. How much of it is a result of treatment, how much of it is a year spent doing nothing but clinic/hospital, and how much of it is a stubborn 5 year old boy is yet to be determined.
Luckily, there are some great people to help him both at school and in the community.
At school, he has an Individualized Education Program (IEP). This is the result of extensive testing he went through and a series of meetings over 4 months to determine how best to help him.
So, 4-5 times a week Carson has an extra reading group at school to work on writing, phonics and reading skills. This is in addition to the regular reading program that he participates in while attending class.
A half hour a week, Carson receives some occupational therapy at school to help him with his fine motor skills. The goal here is to make it easier for him to write.
Another half hour a week is spent receiving instruction in concentration and focus strategies - usually during a class activity.
And I should mention here, that Carson receives a lot of attention and help by his regular teachers and Special Ed teachers who are already in the classroom. Just one advantage of a small but wonderful school system!
Outside of school:
Once a week Carson sees Ms. Rachel for speech therapy where he learns social skills, strategies for retaining instructions in his working memory, use of descriptive language, and practices his processing skills (how to get the thoughts he has in his mind conveyed to someone else and how to receive instruction and carry it out.)
At home, we "have school" every night after dinner. We review how to write various letters, what sounds they make and play games to increase his memory skills. This includes weekends. We also work throughout the evening and days on issues that the speech therapist has asked us to concentrate on - remembering "who, what where", telling stories in an organized way, etc.
We have seen great progress in Carson in just a few short weeks and are very encouraged.
Earlier this summer, Carson had a round of neuropsych testing on top of the testing he went through via the school system. Results of that were quite disheartening as it seemed to say that he has definite cognitive impairments that would probably not be overcome. I am not ready to make such a judgement on a 5 year old. Just as with our cancer treatment, with God's help, we will do the best we can, we will do all that we can, and we will tell our own story. Our course in life and Carson's course in life will not be predetermined........
-Jennifer
Tuesday, October 4, 2011
The Report
Clinic Visit.
ANC very high. 6220
6MP goes up......MTX stays the same.
Check again in two weeks.
All else going well.
ANC very high. 6220
6MP goes up......MTX stays the same.
Check again in two weeks.
All else going well.
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