Oh, Dearest Mother, Sweetest Virgin of Altagracia, our Patroness. You are our Advocate and to you we recommend our needs. You are our Teacher and like disciples we come to learn from the example of your holy life. You are our Mother, and like children, we come to offer you all of the love of our hearts. Receive, dearest Mother, our offerings and listen attentively to our supplications. Amen.



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Subject Topic: Infant cancer advice requested Post ReplyPost New Topic
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guitarnan
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Posted: May 25 2006 at 8:16pm | IP Logged Quote guitarnan
As some of you know from the prayer rquest forum, my youngest godchild, Maggie, turns 1 today and has been diagnosed with hepatoblastoma with mixed histology (liver cancer that contains both fetal and non-fetal abnormal cells). Her parents are trying to find statistics on the effectiveness of the chemotherapy regimen that the doctors are saying is "the only standard treatment" for this type of cancer. She's already had successful surgery to remove the mass on her liver; the doctors believe they got the whole thing, the margins were clear and the lymph nodes showed no sign of cancer.

Unfortunately, this type of cancer is extremely rare. No one seems to have any hard facts on the projected survival rate of children who undergo chemotherapy, or children who don't. Maggie's parents aren't opposed to chemo if it will indeed improve her chances of survival, but the side effects of the 3 chemo drugs include possible deafness, blindness and sterility, as well as the typical side effects of nausea, vomiting, hair loss, etc.

There are undoubtedly 4Real members who are more expert in Things Medical than I, so I thought I'd ask for suggestions on research opportunities. Maggie's parents have already checked out PubMed and other similar sites. The only study they could find on this topic was from 1974.

The chemo regimen that the doctors want to use on Maggie is actually a clinical trial developed by St. Luke Hospital...they have offered no other options to Maggie's parents and have pretty much said it's this or nothing.

Maggie's pathology report is going to be reviewed by a Dr. Feingold in TX, who is supposed to be one of the top experts on childhood hepatoblastoma. That's a good thing, but so far he hasn't done the review. Meanwhile, Maggie's parents are checking out Georgetown University Hospital (DC) next week. That's a haul from WV, but they're willing to go fairly far to get the best treatment for Maggie.

All advice appreciated.



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Lissa
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Posted: May 25 2006 at 8:48pm | IP Logged Quote Lissa
Nancy, I'll ask around about where they might be able to find some stats, but in the meantime, do you know the names of the 3 drugs? When our Kate started treatment we too were presented with a long list of possible (terrifying) side effects including heart toxicity and sterility, but there was no other treatment option. So far she has shown no long term side effects at all.

I'll keep little Maggie (and her parents) in my prayers.

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guitarnan
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Posted: May 26 2006 at 5:32am | IP Logged Quote guitarnan
Lissa,

I think it's cisplatin/vincristine/flourouracil. As you might have guessed, Maggie's parents are currently working with UVA. This chemo regimen is endorsed by Dr. Finegold (sorry for the prior spelling error); he's apparently part of the St. Luke Hospital research group in some way.

I think what will help Maggie's parents most is hard statistical facts. They'd be willing to accept the long-term risks of the 3-drug chemo if Maggie's chances of survival were definitely going to be measurably higher. One of my friends from my online reading group has sent a list of PubMed abstracts (newer than 1974!).

Thanks for your help, Lissa. This is one of those cancers that hits only 1 in 1 million children, and it's pretty hard to find info.



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