Saturday, April 23, 2005 4:14 PM CDT
Babe Ruth Try Outs Today!
Zach was great. It was so fun to see. He listened to his mother and swung his new bat LEFT-HANDED again! Worked like a charm. He hit well, and smashed it a few times. Fielding looked great as well. Very fun for Dave to be there.
Kenny had track this morning. Working on the long jump. Got into the car and said, "Whew, I'm outta shape." Funny kid! We were tired, he was in a choir competition in Pasco yesterday, and it was a long night. But the choir did very well and sounded beautiful.
Heard from Duke this morning. Early. Talked to Dr. Friedman early today. He was in early on a Saturday, he's obviously very dedicated and I know he sees half of the brain tumor cases in the country cross his desk. But, man, it was a disappointing phone call. I had talked to Dr F. in Feb after Dave's gamma knife. Said, "We can't help until he shows progression." Saw Dr. Prados, he got Dave on tamoxifen/thalidomide.....good news for a while, then double vision and bad MRI. Sent all the records to Duke. Dr. F. called 2 weeks ago and said, send the scans, the slides, etc. We did again, and waited, waited. Got the call at 6 am today. He said, "Well, how's he been doing since January?" I'm not too awake, so I didn't say, "Well, I told you all that 2 weeks ago..." I just went thru it again. Then he said that he didn't have any clinical trials Dave was eligible for, that it was too soon to say on the CPT-11/Avastin, and that he couldn't offer us anything different or more than Dr. Prados, maybe he'd recommend hydroxyurea/gleevec. End of conversation. Turns out Dave's tumor tested to be non-responsive to gleevec. (Thank you, Dr. Sacks for running that test.) So I guess we're back at square one. Maybe square negative one, because the tumor has continued to wreak its havoc in those waiting weeks, and the double vision is daily now, even with upping the dex. And some days the walking is not so steady. AAAAAAAHHHHHHH!
Dr. Prados mentioned several options: VP-16, Iressa, Tarceva, beta interferon, rapamycin.
The $64,000 question:
HOW DO WE DECIDE WHICH ONE AND IN WHICH COMBINATION???
CPT-11/Avastin is another option, as is PCV. And I talked to Dr. Merchant about a mushroom that has been in use in Japan with good results. Dr. Merchant is beginning research in the US. We may be able to add this to any other combo we use. I don't know what to do, and we've already waited too long.
Right now we're leaning toward the CPT-11/Avastin combo. It's new in use, but has shown some amazing results. 21 patients, 10 months...only one showed tumor growth, 8 had stable disease, the rest had improvement. It is not labeled for use for brain tumors, and will likely cost us abour $4000 per weekly treatment. Next step is to find out if insurance will cover it.
We are on our knees daily, praying for guidance and discernment. Got a call in to Dr. Prados to see what he thinks about CPT-11/Avastin.
KOKO. On a sad note, a few prayer requests. Kate's classroom teacher and PE teacher are married and their child was stillborn yesterday. We are broken-hearted for this little family. Please pray for comfort in their loss.
Also, Mark Daltoso, who was diagnosed with a brain tumor 5 years ago and waged a mighty battle against his tumor, has laid down his sword. He died on April 18, 2005. He was a much beloved husband and father to 4 children. His mother has been by his side throughout the journey, and has been a source of invaluable support to us, as well. Please pray for Mark's family, especially my dear friend, his mother, Marguerite.
Many mother's hearts are hurting.
Babe Ruth Try Outs Today!
Zach was great. It was so fun to see. He listened to his mother and swung his new bat LEFT-HANDED again! Worked like a charm. He hit well, and smashed it a few times. Fielding looked great as well. Very fun for Dave to be there.
Kenny had track this morning. Working on the long jump. Got into the car and said, "Whew, I'm outta shape." Funny kid! We were tired, he was in a choir competition in Pasco yesterday, and it was a long night. But the choir did very well and sounded beautiful.
Heard from Duke this morning. Early. Talked to Dr. Friedman early today. He was in early on a Saturday, he's obviously very dedicated and I know he sees half of the brain tumor cases in the country cross his desk. But, man, it was a disappointing phone call. I had talked to Dr F. in Feb after Dave's gamma knife. Said, "We can't help until he shows progression." Saw Dr. Prados, he got Dave on tamoxifen/thalidomide.....good news for a while, then double vision and bad MRI. Sent all the records to Duke. Dr. F. called 2 weeks ago and said, send the scans, the slides, etc. We did again, and waited, waited. Got the call at 6 am today. He said, "Well, how's he been doing since January?" I'm not too awake, so I didn't say, "Well, I told you all that 2 weeks ago..." I just went thru it again. Then he said that he didn't have any clinical trials Dave was eligible for, that it was too soon to say on the CPT-11/Avastin, and that he couldn't offer us anything different or more than Dr. Prados, maybe he'd recommend hydroxyurea/gleevec. End of conversation. Turns out Dave's tumor tested to be non-responsive to gleevec. (Thank you, Dr. Sacks for running that test.) So I guess we're back at square one. Maybe square negative one, because the tumor has continued to wreak its havoc in those waiting weeks, and the double vision is daily now, even with upping the dex. And some days the walking is not so steady. AAAAAAAHHHHHHH!
Dr. Prados mentioned several options: VP-16, Iressa, Tarceva, beta interferon, rapamycin.
The $64,000 question:
HOW DO WE DECIDE WHICH ONE AND IN WHICH COMBINATION???
CPT-11/Avastin is another option, as is PCV. And I talked to Dr. Merchant about a mushroom that has been in use in Japan with good results. Dr. Merchant is beginning research in the US. We may be able to add this to any other combo we use. I don't know what to do, and we've already waited too long.
Right now we're leaning toward the CPT-11/Avastin combo. It's new in use, but has shown some amazing results. 21 patients, 10 months...only one showed tumor growth, 8 had stable disease, the rest had improvement. It is not labeled for use for brain tumors, and will likely cost us abour $4000 per weekly treatment. Next step is to find out if insurance will cover it.
We are on our knees daily, praying for guidance and discernment. Got a call in to Dr. Prados to see what he thinks about CPT-11/Avastin.
KOKO. On a sad note, a few prayer requests. Kate's classroom teacher and PE teacher are married and their child was stillborn yesterday. We are broken-hearted for this little family. Please pray for comfort in their loss.
Also, Mark Daltoso, who was diagnosed with a brain tumor 5 years ago and waged a mighty battle against his tumor, has laid down his sword. He died on April 18, 2005. He was a much beloved husband and father to 4 children. His mother has been by his side throughout the journey, and has been a source of invaluable support to us, as well. Please pray for Mark's family, especially my dear friend, his mother, Marguerite.
Many mother's hearts are hurting.
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