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| alethea vazquez (guest) |
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Posted:08/22/2007 7:38 PM |
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Cristina has AT/RT she was diagnosed in March. She was on the 52 week protocol. She was on week 18 when we did her MRI and the Tumor was growing where it had metastized on the left side of her brain. The original area and other ares in her brain anad spine were decreasing significantly. She is having seizures now and we are only qualified for stopeside every day for 21 days and off for 7 days. I was hoping someone might now of a different treatment if this dosen't work.
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| Vampdaddy (guest) |
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Posted:08/22/2007 10:37 PM |
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Alethea-
Is this the "IRS III" protocol? My son is currently completing it in Boston and doing great -- he is being treated alongside another child who has had some similar experiences to yours, and I know they are working on a "plan b". If you're treatment folks are part of the study Dana Farber is leading, they may have already talked to folks there, but if not it might be good to connect with them. You can email me at creaturecrawl@hotmail.com and I can get you hooked up with the right person.
Anyone else out there who has a child in treatment for AT/RT...If you aren't aware of the IRS III protocol, you need to be. My wife and I are eager to connect with other AT/RT families, so please don't hesitate to email me as well -- or check out my blog as a "cancer dad" at http://vampdaddy.blogspot.com .
Peace to one and all-
Tym
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Jenn
Posts:8
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Posted:08/27/2007 2:57 AM |
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Ben was also on the IRS III protocol and has been 2 1/2 yrs off treatment and going great. If I can be of any help just let me know
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missmattea
Posts:0
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grayson
Posts:16
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Posted:09/07/2007 8:03 PM |
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My 20 month old son was diagnosed two months ago. We were at the beach, he fell, bumped his head...started vommiting. We thought he had a concusion. They did a CT scan and found a brain tumor. He manifested no symptoms prior to his fall.....this was an incrediable shock. I am sure there are a lot of similar stories. Saturday at the beach....tuesday having brain surgery!
The pathology report confirmed ATRT. A week later after his cranial surgery recovery, we had planned on starting Dr. Finlay's Headstart protocal. Have any of you heard of this? After further reserch...our doctor found cases of aditianal tumors being present symotaniously in other soft tissues....primarily the kidney. As she viewed the MRI of the spine knowing this information, she though she saw a spot near or on the kidney. The following day after a body CT scan it was confirmed Grayson had an addition rhabdoid tumor of the kidney. His kidney was removed the following day. I never thought I would wish we only had brain cancer!
From what I hear, we are the only case to have found both the tumors at the same time before chemo. Does anybody have info other wise? I encourage all of you who are newly diagnosed to check both the brain and body (especially kidney). We have best case scenario concidering both tumors were fully resected. On the flip side, there is no protocal for treating both the brain and kidney at the same time. We are being treated at Childrens in Los Angeles...Dr. Finlay is the Brain tumor department head. It is a very difficutl situation for us. The protocal that seems to work for the brain is very hard on the kidney....and Grayson now only has one kidney.
We were presented with a couple of choices. We are going with the more aggressive method. A modified version of the headstart program. We have 5 courses plus stem cell transplant.
I would like to hear more about the IRS III protocol. I remember our doctor vaguely going over this....she felf in our case modified headstart might be better....but nobody really knows. I do hope we are in the right treatment.
Also, does anybody understand about using ones own stem cells if the INI-deletion is present in the blood? The doctors seem to believe it is not reintroducing the problem....but I have a hard time understandg why.
Sorry so long....I am new at this and have a lot of questions.
Grayson's mom
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Missy
Posts:4
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Posted:09/10/2007 3:30 PM |
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Your entry caught my eye because in August of 2006 my family was also on vacation at a beach. On the way, our youngest daughter (almost 18 months at the time) began vomiting...no other symptoms. We took her to an Urgent Care who sent us to the ER because they couldn't determine the cause of the vomiting. The ER treated us like over-reactive parents and told us that Sophie had an ear infection (which we learned she never had). When her vomiting didn't stop, we took her to a pediatrician on the island. This doctor felt she had an upper GI infection and treated her accordingly. Her vomiting stopped but 2 days later she woke up and wasn't using her left arm fully. We were preparing for a 12 hour drive home the next day and decided to take her back to the pediatrician one more time to make sure everything was okay. While at the pediatrician's office he took a finger prick of blood. The next thing I knew my daughter was getting an IV and the next thing I knew we were in an ambulance being taken to the ICU unit of the closest pediatric hospital which was a half hour away. Sophie received a CAT scan where it was determined that she had a very LARGE brain tumor. The next day we were air cared home. 2 days later she had brain surgery. This is where our stories are different. Our little Sophie earned her angel wings during surgery. What started as a family vacation turned to one of our children vomiting to being diagnosed with a brain tumor to dying suddenly. 2 days after Sophie died, our oldest daughters had to begin school. We learned 2 weeks later that Sophie developed ATRT. We have been devasted by this as I am sure you can relate. Sophie has a care page: SophieMeinhardt. We also have a website for a memorial 5k walk/run that tells our story. www.sophiesangelrun.org We will keep you in our prayers and are doing what we can to raise $ to help fight this devastating disease.
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grayson
Posts:16
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Posted:09/10/2007 8:49 PM |
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Missy,
I e-mailed you personally through Sophie's care page. Thank you for your entry.
Best wishes,
Leslie
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