Pediatric DSRCT (Desmoplastic Small Round Cell Tumor) cancer

[Anonymous]

My husband's cousin has a four year old son just diagnosed wtih DSRCT (Desmoplastic Small Round Cell Tumor). They haven't yet staged the disease but I understand this diagnosis in general has a particularly poor prognosis. It seems to be a very rare disease; can anyone offer any advice or information about this diagnosis or the treatment protocol?
Any advice for the family in general? They aren't local (in NY state) so we can't even be as hands-on as we'd like with assistance, but we'd like to do something to make this next awful stage of their lives a little easier as they wage this war.

Any advice appreciated. Thanks.

[Anonymous]

Please have them join the DSRCT Yahoo Support Group . . there are caregivers, mothers, fathers, and patients who frequent the group and share resources and information about the disease. Four years old is young, but there are more than a few parents with children who have DSRCT under the age of 12.

[http://health.groups.yahoo.com/group/DSRCT]

Keep in mind that every single patient is different and no one is a statistic . . pay little attention to prognosis. There is treatment available and an excellent pediatric surgeon at Memorial Sloan Kettering who has experience with DSRCT.

Patty R
Mom to Nathan, dx stage IV DSRCT 3/05
11.13.87 - 2.11.08

[Anonymous]

When I read posts like PP's, I think this makes up for the snarkiness on DCUM.

[Anonymous]

Anonymous wrote:When I read posts like PP's, I think this makes up for the snarkiness on DCUM.

I agree completely.

My thoughts are with your family, OP.