What is ASPS:
Alveolar Soft Part Sarcoma (ASPS) is a very rare, slow-growing tumor of an unknown origin, that arises mainly in children and young adults. ASPS is highly angiogenic: it involves intensive growth of new blood vessels, that connect the tumor to the blood system, and enable dissemination of tumor cells into the blood stream. Those tumor cells can then easily migrate into other parts of the body – typically the lungs, and the brain. ASPS is a sarcoma, and that indicates that this cancer initially arises in tissues that connect, support, or surround other structures and organs of the body. The term “soft tissue” indicates that this sarcoma does not originate in bone, but in soft connective tissues. ASPS arises in muscles and deep soft tissue of the thigh or leg (low extremities), but many times will appear in the upper extremities: hands, the neck and the head. While ASPS is soft tissue sarcoma, it may spread and grow inside bones. ASPS is a rare cancer. While sarcomas constitute about 1% of all cancers (15% of all childhood cancers), ASPS is less than 1% of all the sarcoma cases. According to the American Cancer Society, about 9530 new cases of soft tissue sarcoma will be diagnosed in the USA in 2006. That predicts only around 100 new cases of ASPS.ASPS may exist in the patient’s body for a long time before being diagnosed. The primary tumor may grow large, gradually pushing aside surrounding tissues, before causing discomfort. Therefore, ASPS symptoms may either be a painless swelling or a soreness caused by compressed nerves or muscles affecting the range of motion in the area. (From "Alveor soft-part sarcoma of the extremity: a case report" by Sidi, Fragandrea, and Koliouskas)As stated in the above sited information, ASPS may exist in the body for a long time before being diagnosed. In spite of the fact that Chelsea had all of the necessary tests, it went undetected for two years. The only symptom Chelsea had was breakthrough bleeding. Do you know how many women encounter problems with breakthrough bleeding (bleeding in between your monthly cycle)!? She ended up being diagnosed with a hormonal imbalance (this is common) and sent home with birth control pills. Sadly, and yes I say sadly, the birth control pills worked. The bleeding stopped and then Chelsea decided she didn't want to take them anymore. She actually said that she didn't feel comfortable taking hormones and she wanted to research to see if there was something she could do that was more natural. She's always been health conscious. Something I'm very thankful for and something that could've possibly saved her life. I don't even want to imagine what the outcome would've been had she continued to take hormones while unbeknownst to us...having cancer. So, she stopped and a year later the bleeding started back again. Only this time, it was more frequent and heavier because (as stated in the above information) it had created a lot of blood vessels. Two years, hormones, and a lot of blood vessels later the tumor was BIG and caused her to hemorrhage. Her doctor told us "If I operate on her now she'll die on the table!" Somehow I knew that but it was still another blow to the gut... double OUCH!
Considering the outcome, I still find it hard to believe that Dr. Morgan wasn't even going to take her case! I don't know why but I couldn't take NO for an answer. Yes I do, it was God...it was faith! Don't ever underestimate the power of faith! Dr. Morgan talked it over with one of her partners and made the decision to send us home (back to Tallahassee) so that Chelsea could have a PET scan. First things first, they needed to make sure it hadn't spread. We were instructed to hand carry the disk with the results back to her office. She was planning to present Chelsea's case at the Sarcoma Conference to see what, if anything, could be done. After the conference she would follow up with us instructing us accordingly. Her exact words were "I think we have some time because this is a very slow growing cancer." Only, that's not what happened!
See what happened was: (where did that come from...you know..."see what happened was" ?) We ended up in the emergency room that very same night because she started hemorrhaging again. Though the hemorrhage stopped, she had lost a lot of blood and the ER doctor told me that if she started to hemorrhage again they would have to Life Flight her back to Shands Hospital in Gainesville. There was nothing they could do for her at our local hospital except stabilize her. Then she said something that I needed to here...she said "What's protocol? There has to be a protocol." We needed a plan! By the grace of God we managed to make it through the night but the very next morning the bleeding started again and this time, she fainted. I remembered what the ER doctor said so I contacted the oncologist (Dr. Morgan) at Shands and repeated what the ER doctor said. Within a matter of 15 minutes I received a call back from Dr. Morgan's office informing me to get Chelsea there STAT! By the time we got her there she had lost so much blood that she required 6 blood transfusions and they had to perform an embolization to cut off the blood supply to the tumor. Suddenly, we had a plan...a course of action. From the time we had left Dr. Morgan's office she had contacted 15 other doctors in order to come up with a course of action. Though it wasn't a sure thing, it was something, and that gave us all hope! The plan was: cut off the blood supply to the tumor (stop the hemorrhage), five weeks of radiation to try and shrink the tumor as much as possible, surgery to remove it from the vaginal wall, a radical hysterectomy, and the removal of her bladder. Triple OUCH!! The embolization worked (bleeding ceased) radiation was a success (the tumor shrunk) and though she did have a radical hysterectomy, she didn't lose her bladder. The tumor had not spread and there were no cancerous cells in the surrounding tissue. PRAISE GOD! I'm still doing the happy dance!
That brings me to the purpose for this post. I learned a very important lesson from my daughter and everyone I came in contact with who were dealing with life threatening illnesses. I learned that it's not enough to have a dream unless it's a dream that really matters. Life is so much more than our dreams. What good is a dream if you don't have anyone to share it with? What good is a dream if you come into this world, fulfill your dream and leave this world without having made it a better place? What good is a dream if you've never touched someone's life? My daughter's dream wasn't to get cancer but she got cancer and she dreamed that she could be a better person and make this world a better place as a result of having cancer.
She never complained...not one time! When she cried, she cried for us, her family. When she worried, she worried about us, her family. She reminded me about what I know to be true...dreams aren't important...people are! If writing is just about me, I would rather go write in my journal. But, if by some small chance I can bless someone else, inspire someone, or make a difference, then I'll continue to blog. I'll pursue it with joy and passion, dedicating every post to something worthy of our attention!
So this, to me, is really my first official REAL blog post because it's about something that really matters. Cancer and everyone who's battling this life threatening disease are worthy of our attention! So, I dedicate this post to my hero, Chelsea Daniel and all the other unsung hero's who have managed to teach us what's really important! This post is for all of you because: in spite the pain, frustration, loss of appetite, sleepless nights, chemical burns, loss of hair, loss of energy, surgeries, procedures, and countless other things you continue to smile when it's dark! You learn somehow to dance to a new beat enjoying life and taking it as it comes. You teach us that we can stand tall and still be strong when the storms of life come, and if by some small but real chance we get knocked over...getting back up is easier than we think.
Thank you Chelsea Daniel for teaching me how to really dream!
If you or someone you know have been diagnosed with ASPS here are just a few resources we've found to be helpful: CureASPS.org
American Cancer Society
A Global Initiative
A Case Report
Because Chelsea is only 1 year post treatment there's still a lot that we don't know about this disease so we're only able to answer questions according to our limited knowledge. Follow up appointments are every three months so we'll continue to share information as we receive it.