Hello, I just joined this website and notice your request. I am here also to find people that have children with ALL PH+. My son Robert was diagnosed on 3-12-2007 at the age of 5 1/2. He had a stem cell transplant on 7-18-2007. If you would like to talk please let me know.
Hi Amanda, Patricia and Bob!
My son was diagnosed with Ph+ALL in March 2010 at the age of 5. He did 10 months on an experimental Dasatinib (Sprycel) protocol but because he relapsed while receiving treatment he had a bone marrow transplant from an unrelated donor in Feb. 2011. We are now 9 months post transplant & he is doing great!
I started a group on facebook & we do exactly what you said you are looking for. We chat about treatment options, tests, side effects, various protocols, and generally just support each other.
We are not doctors, oncologists or medical professionals. You can not substitute any advice given for advice from your own child's hemonc doctor but through sharing we are able to sometimes figure out the right questions to ask.
There are almost 50 people in this group from the U.S., Canada and the U.K. If you are interested, we would love to get to know your families!