Dear Crystal,
Thank you for your very thoughtful update with the VERY GOOD!! and WONDERFUL!! news that precious little Brinley's October scans showed no new tumors
. All of us Hesses are sharing your great relief and joy and are sending VERY happy smiles and hugs your way
.
I understand and share your frustration about the doctor (was it Dr. Hawkins?) having not also ordered scans of Brinley's extremities. Have any scans of her legs and arms ever been done since the original diagnosis of her tumor in her abdomen? If not, I think that it is very important that these scans be done sometime soon to rule out the possibility that the primary tumor may actually be in her leg or arm, rather than the one in her abdomen since most ASPS primary tumors are typically, although not always, located in the extremities. Of course we know that nothing about dear Brinley's ASPS is typical with her being SO much younger than most ASPS patients, so Hopefully the primary tumor was the one in her abdomen and because it was found and resected at such a small size, it will not metastasize to any other areas.
As Olga said, Dr. Robin Jones is an excellent new Sarcoma oncologist at SCCA in Seattle who is currently treating both Brittany and Jordanne. I don't know if Dr. Jones would be able to care for Brinley as a patient since she is under 18 and may be required to be treated by a pediatric oncologist, but it might be worth exploring since our friends' three year old granddaughter is being treated at SCCA for her leukemia as well as by Dr. Chappie Conrad who is an orthopedic oncology surgeon and Sarcoma specialist at Children's Orthopedic Hospital and SCCA.
I am sorry that we missed seeing Brinley and your family when you were in Seattle for the scans, but we look forward to Hopefully being able to get together with you during your next visit. In the meantime, I Hope that you have a most beautiful, joyful, and abundantly blessed Holiday season shared together with your beautiful family, and a very happy and healthy beginning to the New Year bright with Hope.
Sharing precious Brinley's VERY GOOD!! scan results with greatest happiness, and crossing the miles to embrace you with BIG hugs, special caring, warm friendship, and continued Hope,
Bonni
Bonni
), as he is actually a pediatric oncologist and deals primarily with cancer in young children. He has had several ASPS patients and seems to be up to date on his ASPS research. We found the advice he's given us is very much in line with research we've done on our own and through these forums.