The other day I was heading to the bathroom and I passed, in the hallway, the place where I had just finally cleared the mountain of laundry that had blocked it for over a week. There sat yet another blanket and pair of wet pajamas...and it made me think:
~Because we have James, there seems to always be another pile of laundry to be done.
~Because we have James, homework time takes on a whole new meaning.
~Because we have James, I get calls from the school often to tell me that his pump isn't working.
~Because we have James, Johannah has someone to complain about in the bedroom.
~Because we have James, we all - at times - have a "special" aroma.
~Because we have James, we spend holidays in the hospital and endless nights at other people's houses.
~Because we have James, we know more about the anatomy of the brain than most.
~And because we have James, we have bills coming out the "wazoo."
BUT....then I thought.....
~Because we have James, Jon has someone to go candy selling with (that's significant if you know my Jon).
~Because we have James, we got to meet Dr. Mary, Kate Onkka, Peggy, Loice, the Smiths, and the many others that have become our friends.
~Because we have James, we have learned to be patient with those that aren't the same as us.
~Because we have James, we spend holidays giving gifts to those who spend holidays in the hospital.
~Because we have James, we have the opportunity to help others that are heading down "our road."
~Because we have James, we have seen God work in ways that we never could have otherwise.
~And because we have James, best of all, Mom still gets lots of hugs and kisses.
So, when I see that blanket in the hallway, answer that call from the teacher, stay up until midnight so he can rewrite his spelling for the fourth time, smell that "aroma," or put a few more bills on the piles in the office - I say,
"Thank you, Lord.....that we still have James."
Happy 10th Birthday, Buddy
Tuesday, January 29, 2008
Friday, January 25, 2008
Measurements
Dr. Goldman's claim that the tumor has grown significantly has bothered me ever since. So, I decided to find all the numbers myself and get to the bottom of this.
I dug up all the MRI reports from Chicago that I could find. Here they are:
(mass is determined by multiplying the three dimensions - subtract the difference from baseline and divide by baseline to determine the % of change)
04/28/04 - 3.4 X 4.5 X 4.2 cm (mass of 64.2)- baseline
01/19/05 - 3.5 X 3.9 X 3.3 cm (mass of 45.1)- 30% decrease
04/20/05 - 3.2 X 3.8 X 3.8 cm (mass of 46.2)- 28% decrease
06/28/05 - 3.4 X 3.8 X 3.8 cm (mass of 49.1)- 24% decrease
11/01/05 - 4.2 X 4.0 X 3.3 cm (mass of 55.4)- 14% decrease
02/20/06 - 3.7 X 4.4 X 1.7 cm (mass of 27.7)- 57% decrease
05/13/06 - 3.4 X 4.3 X 2.5 cm (mass of 36.6)- 43% decrease
08/20/07 - 4.0 X 3.0 X 4.6 cm (mass of 55.2)- 14% decrease
11/17/07 - 4.3 X 3.0 X 5.0 cm (mass of 64.5)- back to baseline
01/11/08 - 4.4 X 3.1 X 5.1 cm (mass of 69.56) - 8% increase
This is my take on it. This shows fluctuation. I don't think the tumor fluctuates like this, I think it is a difference in measurements - probably a different person measuring. It actually makes me understand why they declare "stable" with any change under 25%. If you declared change every time a measurement varied from another, you might drive yourself crazy (if you have not already arrived there). But, I still don't like that practice - that is what allowed James' tumor to return while off treatment for 2 years and all we were ever told was "stable."
I do believe, though, that this implies that for 2 1/2 years the tumor shrank and then for the last year we have slowly lost ground. It probably means we should have considered increasing his dosage a year ago, not two months ago.
I mentioned my problem to Dr. Barbara at the clinic and she spent the entire day tracking down numbers, had Dr. Kahn remeasure the tumor two times, and met with Dr. Burzynski to review them again.
Dr. Barbara called me back to let me know the comparison they have between the two facilities. They have taken the sq. cm. from the Chicago MRIs, making it possible to compare their results with Chicago. Here is what she said, comparing the baseline MRI with the most recent MRI:
In April of 2004, Chicago measured a tumor that was 15.54 sq cm compared to Houston's 15.99 sq cm. Although it is slightly different, it would be considered the same.
In January of 2008, Chicago measured a tumor that was 15.81 sq cm compared to Houston's 13.77 sq cm. Now, this is a significant difference in opinion.
Dr. Barbara questioned Dr. Kahn about the difference in this last measurement. He noted that there is a cyst attached to the tumor. If you were to measure the tumor WITH the cyst, you will get 3.1 cm in that direction - WITHOUT the cyst, you will get 2.7 cm. This would make the actual tumor size 14% smaller, but if you wanted to factor in the cyst it would be 1% bigger - or a stabe tumor.
Okay, so the bottom line......we have a tumor that is anywhere from 1-8% increased (which even in standard treatment would be considered nothing - stable) or 14% decreased. Let's take the mean of it - 7% decrease (which, again, basically means no change).
It is clear that we obviously had a reduction in the tumor around February - May of 2006. I do wish we still had that and didn't lose ground. But, unless the tumor either continued to slowly grow or showed that it simply isn't going to respond to treatment anymore, I don't think we are at a place yet to need to change treatments - the biggest reason being that most other options are only successful in stabilizing a tumor. It seems that we have at least accomplished that with antineoplatons.
Maybe you are saying that this seems like a lot of hullaballu for nothing. But, I had to settle this in my own mind. If someone wanted to claim that they didn't like antineoplastons because it has kept James' tumor the same size, I wouldn't argue with them (although I wouldn't agree). But, to say that his tumor is anywhere from 60-100% increased since starting this treatment simply is not true.
Now......that settled......we will pray for some good results on the next MRI, which I will be calling this week to schedule for the beginning of March. We certainly appreciate everyone's prayers.
I dug up all the MRI reports from Chicago that I could find. Here they are:
(mass is determined by multiplying the three dimensions - subtract the difference from baseline and divide by baseline to determine the % of change)
04/28/04 - 3.4 X 4.5 X 4.2 cm (mass of 64.2)- baseline
01/19/05 - 3.5 X 3.9 X 3.3 cm (mass of 45.1)- 30% decrease
04/20/05 - 3.2 X 3.8 X 3.8 cm (mass of 46.2)- 28% decrease
06/28/05 - 3.4 X 3.8 X 3.8 cm (mass of 49.1)- 24% decrease
11/01/05 - 4.2 X 4.0 X 3.3 cm (mass of 55.4)- 14% decrease
02/20/06 - 3.7 X 4.4 X 1.7 cm (mass of 27.7)- 57% decrease
05/13/06 - 3.4 X 4.3 X 2.5 cm (mass of 36.6)- 43% decrease
08/20/07 - 4.0 X 3.0 X 4.6 cm (mass of 55.2)- 14% decrease
11/17/07 - 4.3 X 3.0 X 5.0 cm (mass of 64.5)- back to baseline
01/11/08 - 4.4 X 3.1 X 5.1 cm (mass of 69.56) - 8% increase
This is my take on it. This shows fluctuation. I don't think the tumor fluctuates like this, I think it is a difference in measurements - probably a different person measuring. It actually makes me understand why they declare "stable" with any change under 25%. If you declared change every time a measurement varied from another, you might drive yourself crazy (if you have not already arrived there). But, I still don't like that practice - that is what allowed James' tumor to return while off treatment for 2 years and all we were ever told was "stable."
I do believe, though, that this implies that for 2 1/2 years the tumor shrank and then for the last year we have slowly lost ground. It probably means we should have considered increasing his dosage a year ago, not two months ago.
I mentioned my problem to Dr. Barbara at the clinic and she spent the entire day tracking down numbers, had Dr. Kahn remeasure the tumor two times, and met with Dr. Burzynski to review them again.
Dr. Barbara called me back to let me know the comparison they have between the two facilities. They have taken the sq. cm. from the Chicago MRIs, making it possible to compare their results with Chicago. Here is what she said, comparing the baseline MRI with the most recent MRI:
In April of 2004, Chicago measured a tumor that was 15.54 sq cm compared to Houston's 15.99 sq cm. Although it is slightly different, it would be considered the same.
In January of 2008, Chicago measured a tumor that was 15.81 sq cm compared to Houston's 13.77 sq cm. Now, this is a significant difference in opinion.
Dr. Barbara questioned Dr. Kahn about the difference in this last measurement. He noted that there is a cyst attached to the tumor. If you were to measure the tumor WITH the cyst, you will get 3.1 cm in that direction - WITHOUT the cyst, you will get 2.7 cm. This would make the actual tumor size 14% smaller, but if you wanted to factor in the cyst it would be 1% bigger - or a stabe tumor.
Okay, so the bottom line......we have a tumor that is anywhere from 1-8% increased (which even in standard treatment would be considered nothing - stable) or 14% decreased. Let's take the mean of it - 7% decrease (which, again, basically means no change).
It is clear that we obviously had a reduction in the tumor around February - May of 2006. I do wish we still had that and didn't lose ground. But, unless the tumor either continued to slowly grow or showed that it simply isn't going to respond to treatment anymore, I don't think we are at a place yet to need to change treatments - the biggest reason being that most other options are only successful in stabilizing a tumor. It seems that we have at least accomplished that with antineoplatons.
Maybe you are saying that this seems like a lot of hullaballu for nothing. But, I had to settle this in my own mind. If someone wanted to claim that they didn't like antineoplastons because it has kept James' tumor the same size, I wouldn't argue with them (although I wouldn't agree). But, to say that his tumor is anywhere from 60-100% increased since starting this treatment simply is not true.
Now......that settled......we will pray for some good results on the next MRI, which I will be calling this week to schedule for the beginning of March. We certainly appreciate everyone's prayers.
Getting help with their medications
We have learned of the Cancer Coalition of America in Houston and are in the process of applying for a grant that will help with the cost of James' treatment. We'd appreciate your prayers for this and will let you know what we find out. If this goes through, anyone wanting to help is able to make a donation to the Cancer Coalition of America and earmark it for James.
I had sent an appeal to the pharmacueutical company in the U.S. (Ovation Pharma) that as the rights to Frisium, in hopes that they might be able to offer some assistance with Johannah's medicine - especially since the price has doubled this year. I heard back today and they say there is nothing they can do. I have emailed the epilepsy foundation and will contact the neurologist in Chicago to see if they know of anything.
Then, we will pray - I know that God will supply.
I had sent an appeal to the pharmacueutical company in the U.S. (Ovation Pharma) that as the rights to Frisium, in hopes that they might be able to offer some assistance with Johannah's medicine - especially since the price has doubled this year. I heard back today and they say there is nothing they can do. I have emailed the epilepsy foundation and will contact the neurologist in Chicago to see if they know of anything.
Then, we will pray - I know that God will supply.
Tuesday, January 15, 2008
Not good...but not bad
The most recent MRI report states that there is a 1 mm increase in the tumor. Even Dr. Goldman says that it looks the same and that 1 mm could simply be a discrepancy in measuring. We do know, though, that there is no significant growth. Dr. Goldman thinks it's time to change treatment. He knows that we have tried to avoid radiation, if possible, and he is offering an antiangiogenesis type chemotherapy, lenolidamide. I asked what results he has seen with it. Although it was only through (or maybe still in) phase I (which only determines appropriate dose), he said that out of 39 children in the trial, 8 showed either shrinkage or stabilization of the tumor. Just to note, it is most often the goal of a chemo regimen to simply keep the tumor stable. So, when this happens - it is considered a great success. Although I would certainly rather have James' tumor remain stable than grow, I just don't feel that the overall goal should be to simply stabilize the tumor.
Without a whole lot of research, consideration, and prayer yet - I believe that our first action, IF the antineoplastons is considered to be not working any longer, would be to talk with Dr. Burzynski and see if he had any options with targeted gene therapy. This is what he is using right now for Pastor Smith's son, Andrew (www.caringbridge.org/visit/aws). This is also what Dr. Burzynski was talking to me about when we visited Houston last. He is very excited about this new treatment. He would love to add it to the antineoplaston therapy - he says it would accelerate the treatment. But, most patients on antineoplastons are locked into clinical trials and are not allowed to add any other treatments. IF that were not an option, I would at least consult with Dr. Wisoff in New York. He is the one and only (for the most part) neurosurgeon in the nation that will consider removing optic gliomas (which are considered inoperable) - and, by what I have seen, has done a good job. That decision would certainly take much prayer and consideration, for it wouldn't be without its problems. But, at least it would be accomplishing much more than just stabilizing the tumor and allowing it to steal the rest of James' vision.
For now, no decisions will be made. James is healthy and well and it seems as if the growth has stopped. So, barring any change that Dr. Burzynski might have, we will continue on and see what the next MRI shows. They have continued to increase James' dose and he is tolerating it well. He is now on 17.5 cc of A10 and 1.9 cc of AS2-1 96 times a day (every 15 minutes). This is the highest dose that he has ever been on, so we are quite happy that he is doing so well on it.
In the meantime, I'd like to look more into any supplements or diet changes that might help in James' treatment - especially since a diet change is what Johannah needs most. Of course, it certainly couldn't hurt the rest of us, either.
We do so appreciate all your prayers.
Without a whole lot of research, consideration, and prayer yet - I believe that our first action, IF the antineoplastons is considered to be not working any longer, would be to talk with Dr. Burzynski and see if he had any options with targeted gene therapy. This is what he is using right now for Pastor Smith's son, Andrew (www.caringbridge.org/visit/aws). This is also what Dr. Burzynski was talking to me about when we visited Houston last. He is very excited about this new treatment. He would love to add it to the antineoplaston therapy - he says it would accelerate the treatment. But, most patients on antineoplastons are locked into clinical trials and are not allowed to add any other treatments. IF that were not an option, I would at least consult with Dr. Wisoff in New York. He is the one and only (for the most part) neurosurgeon in the nation that will consider removing optic gliomas (which are considered inoperable) - and, by what I have seen, has done a good job. That decision would certainly take much prayer and consideration, for it wouldn't be without its problems. But, at least it would be accomplishing much more than just stabilizing the tumor and allowing it to steal the rest of James' vision.
For now, no decisions will be made. James is healthy and well and it seems as if the growth has stopped. So, barring any change that Dr. Burzynski might have, we will continue on and see what the next MRI shows. They have continued to increase James' dose and he is tolerating it well. He is now on 17.5 cc of A10 and 1.9 cc of AS2-1 96 times a day (every 15 minutes). This is the highest dose that he has ever been on, so we are quite happy that he is doing so well on it.
In the meantime, I'd like to look more into any supplements or diet changes that might help in James' treatment - especially since a diet change is what Johannah needs most. Of course, it certainly couldn't hurt the rest of us, either.
We do so appreciate all your prayers.
Thursday, January 10, 2008
One more day
Tomorrow's the day and I will admit that I am anxious about it. I am praying that the next post will be good news. James has tolerated the increased dose very well and I hope it has made a difference. We will then meet with Dr. Goldman on Monday. Because of the holidays and schedules, we have not met with him in several months.
Johannah woke this morning with a bad headache and neck pain. I kept her home and hoped to get her in half day, but she didn't seem to feel better. I do think she does have pain, but when pressed about the whole thing I sensed that something else was wrong. So I pressed and I learned that the girls have started swimming in sports and she cannot swim unless supervised one-on-one, so she's been having to run and work out while the girls swim. Understand that Johannah doesn't cry much, and this brought tears to her eyes. So, I will try to go in during swim time to watch her participate. I confess...I am feeling like a Jonah today. It is really hard to see her hurting. With the school that she misses and the struggles that she has with seizures and clear thinking, she does get left out of a lot of things. It has been quite a lesson for both of us to learn to move forward WITH the life that God has given you and not become stagnant because of it.
Thanks for your prayers.
Johannah woke this morning with a bad headache and neck pain. I kept her home and hoped to get her in half day, but she didn't seem to feel better. I do think she does have pain, but when pressed about the whole thing I sensed that something else was wrong. So I pressed and I learned that the girls have started swimming in sports and she cannot swim unless supervised one-on-one, so she's been having to run and work out while the girls swim. Understand that Johannah doesn't cry much, and this brought tears to her eyes. So, I will try to go in during swim time to watch her participate. I confess...I am feeling like a Jonah today. It is really hard to see her hurting. With the school that she misses and the struggles that she has with seizures and clear thinking, she does get left out of a lot of things. It has been quite a lesson for both of us to learn to move forward WITH the life that God has given you and not become stagnant because of it.
Thanks for your prayers.
Saturday, January 05, 2008
Quick Update
With just a few more days until James' next MRI, I wanted to ask for the prayers of any that are checking the site. The Burzynski Clinic was late on getting James' last MRI disk and just recently let me know that they consider the tumor about 10% bigger. They have increased his dose of A10. He is actually now on a higher dose than he ever has been. It is our hope and prayer that this will have arrested anything that was happening. The MRI should let us know. He is doing well, but I do worry with school starting again. We have talked to James about really doing his best this semester and we hope that the increase in dose doesn't throw everything off. He needs a good semester and we know he can do it if he really tries.
Johannah is doing pretty well. She did have another grand mal seizure on Thursday, but I think that was the only one for the entire Christmas break. Although she did have mornings where we saw seizure activity, we were able to get it stopped before she had a big one. She, also, is going to be trying for a better semester than the first one.
We cannot tell how much we appreciate all the prayers. But, I wanted to specifically ask for prayer for:
1. Shrinkage, or at least stability, on James' next MRI.
2. Help with staying awake and concentration for James in school.
3. Fewer seizures for Johannah.
4. A clear mind and help remembering for Johannah in school.
Please take the time to leave us a comment. It is so encouraging to know who is praying for James and Hannah.
Johannah is doing pretty well. She did have another grand mal seizure on Thursday, but I think that was the only one for the entire Christmas break. Although she did have mornings where we saw seizure activity, we were able to get it stopped before she had a big one. She, also, is going to be trying for a better semester than the first one.
We cannot tell how much we appreciate all the prayers. But, I wanted to specifically ask for prayer for:
1. Shrinkage, or at least stability, on James' next MRI.
2. Help with staying awake and concentration for James in school.
3. Fewer seizures for Johannah.
4. A clear mind and help remembering for Johannah in school.
Please take the time to leave us a comment. It is so encouraging to know who is praying for James and Hannah.
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