KJ from Utah - Dx Aug 2013 at 6 years old
Posted: Mon Sep 09, 2013 4:27 pm
Hello Everyone,
I have been lurking around here since my sweet little 6 year old grand daughter was diagnosed with ASPS on August 29th.
This process has been a blur, but of course I have been desperately trying to learn about ASPS and what I find is really very frightening.
My daughter noticed a small bump on her little girls shoulder blade earlier this summer, so she took her to her pediatrician. The pediatrician was certain it was only a lipoma, but sent my daughter to get an ultra sound just to be certain. The ultra sound was not confirming it as a lipoma, so she referred her to a CT scan. This scan seemed to indicate blood flow, so they referred her to a dye contrast MRI to be done on August 2nd.
At this point they were referred for a biopsy with Primary Children's Medical Center here in Utah. The pediatrician stepped in and told my daughter she preferred working with a surgeon at another hospital so they took my grand daughter there. This surgeon felt utterly certain it was only a lipoma and they could either remove it or leave it, since lipomas pose no risk. My daughter and her husband wanted to remove it. Surgery was scheduled for August 9th. Coming out of that surgery to speak to her parents, the only thing the surgeon could tell them was that it was NOT a lipoma. He said her carefully removed it, and felt certain he "got it all". The tumor was then sent for testing.
On August 15th, we were told it was sarcoma. Not a type yet, only that it was sarcoma. By now my daughter asked the doctors to stop speculating to her, and in her words; "I would rather be stabbed one time in the heart with a knife rather than being poked over and over with an ice pick." Our little girl had just started 1st grade, and her Mom has two younger boys at home. She was determined not to panic and second guess the results, since her speculation would not change the diagnosis or the prognosis. All it would serve to do is frighten her.
A PET/CT scan was ordered for August 28th, and we were give the results on August 29th.
Alveolar Soft Part Sarcoma, and good news is a clear scan.
With all of my searching and looking and trying to guess what was going to happen, I had not run across this word.
They wanted to go back in for clear margins. Her surgery was scheduled for September 6th. The tumor board met in the morning of her surgery, and her case was presented prior to surgery. The consensus was 100% that this was the course of action to take. The surgeon came out happily to tell us we had clear margins. They were concerned they may have to cut into her ribs, and remove muscle to get clear margins but they were able to get the clear margins without these things happening.
I marvel at her strength and her courage. She refused to stay in the hospital the night of her surgery, and since they took her home her only pain relief has been Tylenol. She does not like the way pain medication makes her feel. She still has a drain in, since enough tissue was taken the surgeon was concerned about the fluid. Also going in twice to the same site increases infection risk.
Today, September 9th we are waiting for the final pathology. We are praying it is clear, too. Results will not be in until tomorrow.
I am hoping to hear this is all good news, and we can look forward to years of a healthy happy girl. From what I read this can reoccur at any time and we have only uncertainty. The only control we have is how we manage the uncertainty. We will have her scanned every three months now for the first year. If we are clear after a year, they slowly open the time on the scans but regular scans are an important part of her future.
Anyone who has input, I look forward to hearing from you. Our baby girl will be turning 7 years old on September 25th.
I have been lurking around here since my sweet little 6 year old grand daughter was diagnosed with ASPS on August 29th.
This process has been a blur, but of course I have been desperately trying to learn about ASPS and what I find is really very frightening.
My daughter noticed a small bump on her little girls shoulder blade earlier this summer, so she took her to her pediatrician. The pediatrician was certain it was only a lipoma, but sent my daughter to get an ultra sound just to be certain. The ultra sound was not confirming it as a lipoma, so she referred her to a CT scan. This scan seemed to indicate blood flow, so they referred her to a dye contrast MRI to be done on August 2nd.
At this point they were referred for a biopsy with Primary Children's Medical Center here in Utah. The pediatrician stepped in and told my daughter she preferred working with a surgeon at another hospital so they took my grand daughter there. This surgeon felt utterly certain it was only a lipoma and they could either remove it or leave it, since lipomas pose no risk. My daughter and her husband wanted to remove it. Surgery was scheduled for August 9th. Coming out of that surgery to speak to her parents, the only thing the surgeon could tell them was that it was NOT a lipoma. He said her carefully removed it, and felt certain he "got it all". The tumor was then sent for testing.
On August 15th, we were told it was sarcoma. Not a type yet, only that it was sarcoma. By now my daughter asked the doctors to stop speculating to her, and in her words; "I would rather be stabbed one time in the heart with a knife rather than being poked over and over with an ice pick." Our little girl had just started 1st grade, and her Mom has two younger boys at home. She was determined not to panic and second guess the results, since her speculation would not change the diagnosis or the prognosis. All it would serve to do is frighten her.
A PET/CT scan was ordered for August 28th, and we were give the results on August 29th.
Alveolar Soft Part Sarcoma, and good news is a clear scan.
With all of my searching and looking and trying to guess what was going to happen, I had not run across this word.
They wanted to go back in for clear margins. Her surgery was scheduled for September 6th. The tumor board met in the morning of her surgery, and her case was presented prior to surgery. The consensus was 100% that this was the course of action to take. The surgeon came out happily to tell us we had clear margins. They were concerned they may have to cut into her ribs, and remove muscle to get clear margins but they were able to get the clear margins without these things happening.
I marvel at her strength and her courage. She refused to stay in the hospital the night of her surgery, and since they took her home her only pain relief has been Tylenol. She does not like the way pain medication makes her feel. She still has a drain in, since enough tissue was taken the surgeon was concerned about the fluid. Also going in twice to the same site increases infection risk.
Today, September 9th we are waiting for the final pathology. We are praying it is clear, too. Results will not be in until tomorrow.
I am hoping to hear this is all good news, and we can look forward to years of a healthy happy girl. From what I read this can reoccur at any time and we have only uncertainty. The only control we have is how we manage the uncertainty. We will have her scanned every three months now for the first year. If we are clear after a year, they slowly open the time on the scans but regular scans are an important part of her future.
Anyone who has input, I look forward to hearing from you. Our baby girl will be turning 7 years old on September 25th.
