Looking for families with hepatoblastoma and trisomy 18

[jodieann70]

I am looking for families with children who have hepatoblastoma and trisomy 18. My son was diagnosed in April 2007 with mosaic trisomy 18, and then through a renal ultrasound, hepatoblastoma was found in June 2007. He has undergone a right lobe resection and started chemo in July 2007. After two rounds of chemo a ct scan showed another tumor. He just underwent a second liver surgery September 6, 2007. The pathology test showed that the tumor was dead.
I would like to get in contact with any other families who have done the chemo and what results they have had.

[Chris' Mom]

There are no other conditions associated with his but he is recieving cisplatin (4 hr drip) and doxorubicin (30 min drip) once every 3 weeks.
He has severe pulmonary metastisis and that is really what we are really fighting to treat at this time.
The tumor in his liver was 6 cm in diameter at the time of diagnosis (resectable) and had shrunk to half the original size by the 2nd round of chemo, which at that time was the 4 hr drip of cisplatin, 30 min drip of vincristine, and a shot of 5-fluorouracil.
The doxorubicin is a bit harder on him, but his afp has dropped from 70,000 to 16,000 in just a couple of weeks.
He just had his 4th round earlier this week.
Hope that helps you out some. I thinks its pretty important for people to be able to share and compare their experiences concerning hepatoblastoma.
There just isnt enough info out there, maybe the families dealing with this can help improve that a bit.



Praying for you guys,
Angela Campbell