Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thank you all so very much for your thoughtful responses! To answer a few of your questions: This was an MRI without contrast of her belly but due to her small size (age 3) more of her body is shown in the scan. No I did not have a difficult delivery of Brinley... and the previous scan showing that ...

Searching for information- Please help if you can give insight! We just had Brinley's scans yesterday ( April 18th) It was just a bad day from start to finish.... We woke up early and Brinley was so good about not eating or drinking at the hotel- we headed to the hospital and arrived about an hour e...

Debbie, This is still such a learning process for us....unfortunately our pediatric oncologist and I don't EVER seem to be on the same page. :( I fought like crazy to get him to do a full body scan on her last April. He very much thought I was being fanatical and asked, "where will we draw the ...

Thank you Debbie for checking on us....I am afraid I have been very bad at checking in. Brinley had her last set of scans in October~ they were all clear and we were "over the moon" with excitement! We are to schedule in Seattle again in April and hope to once again celebrate. She has us a...

Welcome to the forum....a little late as I have not checked in in some time. I am Brinley's from Montana's mom! Brinley is now 3 and so far we have had all clear scans since the removal of her abdominal tumor in June 2012. If you ever want to speak with us please feel free to contact/ message us! I ...

Well we are getting ready for our trip to Seattle Children's Hospital next week for Brinley's next set of MRI's. We are very happy to say that they have FINALLY agreed to scan her extremities as well as her lungs, brain And belly! It has been such a battle to get them to agree to do her arms and leg...

Thank you Olga and Bonni for your responses to my post in November. I had not visited the site since placing my post. Happy and healthy new year to everyone! May 2013 bring good things for the ASPS community! Thank you both for the info on the new Doc in Seattle as well. They promise me they will sc...

Hello again! It has been awhile since I have been on the site. We had another visit to Seattle Children's Hospital at the end of October. They put Brinley under and did MRI's of her head and trunk. Great news was that there are no new tumors in her brain, heart or lungs! So happy about this news! We...

Thanks Olga! I so appreciateyour help! We heard back from Dr.Dubois at UCSF...what an amazing man. He was so honest in telling us that he believes Dr.Hawkins is every bit as skilled if not more so than he. As Dr.Hawkins hasis seen childrenu closer toin Brinley's age, and I believe Dr.Dubois said his...

Connie, Thanks so much for your response. I am so sorry too for your husbands dx :( I looked at the link- and he seems like an amazing doctor. My pediatrician has already sent pathology, scan, and Brinley's file to Dr.Dubois in San Fransisco. He has called us back and unfortunatly has not seen any o...

Thank you Olga for your response. I passed that info along to our pediatrician. We have read articles posted by MSKCC and they do seem very knowledgable. We really appreciate your input, thank you for taking the time to respond!
Sincerely,
Crystal, Brinley,& family

Thank you Mario! I have heard a bit about you and that you were under St.Judes care at one time, but are too old now??? So happy to hear a good hospital & oncologist referral all in one. The link did work and I sent it to Brinley's pediatrician to look over the details. Once again thank you for ...

Hello again everyone, I am writing to you all today to ask if anyone has suggestions of where to seek our second opinion for treatments. It seems to be challanging enough finding hospitals familiar with ASPS, but then adding the factor that Brinley is only two years of age seems to throw another loo...

Thank you Ivan. I hope that we can gain a good second opinion so that we can remain vigilant and address whatever comes our way, good or bad! I commend you on your courageous battle and look forward to your insight on our journey forward. Stay strong! Bonni, thanks again. I feel so blessed to have f...

Sorry, Bonni,
Typing on my cell during my lunch break and it submitted before I was through
Anyway, I was trying to ask how Brittany is doing now? I will search the site and read your families posts.
Thank you again for your response.
Sincerely,
Crystal, Brinley and family