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Team Sarcoma

if you are battling sarcoma, here you can join with others fighting the same fight....

Location: Everywhere
Members: 66
Latest Activity: Mar 1, 2012

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Comment by Tiffney on November 18, 2008 at 10:43am
My daughter Endsley is currently undergoing treatment for an embroynal rhabdo that was removed from her bladder. We only have 1 more big chemo treatment, then go into maintence treatment for the rest of her 48 weeks. We still have to do local radiation for 3 weeks. She is doing so well, anyone who sees her would never know what she's battling. God is so Good!!~Jeremiah 21:11
Comment by Laura Gorney on November 14, 2008 at 7:55am
My son, Walker, was diagnosed at 3 1/2 with Ewing's Sarcoma/PNET in Oct. '07. Halfway through treatment we discovered through a routine ECHO that that his heart was becomming damaged (we later learned it was most likely the doxo). He unexpectedly passed away on April 11, 2008. He received treatment at Portsmouth Naval Hospital in Portsmouth, VA.

We have another son, Mason, age 7. He's in therapy with a child psychologist and my husband and I are part of a grief support group. The last year has been the hardest year of my entire life. I would give anything to go back....before cancer.
Comment by Misty Barger on November 5, 2008 at 9:02pm
My daughter, Emily, was diagnosed in January 2007 with Embryonal Rhabdomyosarcoma. After months of chemo and 25 rounds of radiation, she was in remission until May of this year. She passed away on June 24. Another family in our area also lost a daughter to Rhabdo just 3 weeks later. Together we have started what is called The Butterfly Fund to raise money for childhood cancer awareness and East Tennessee's Children's Hospital.
Comment by Angie Giallourakis on November 1, 2008 at 3:55pm
Hi Tracie,
My son, Steven, is an survivor of Osteosarcoma. He had a tumor removed from his spine, and over 30 cancer cells in his lungs. He went through the surgeries, radiation and chemo. He had one relapse in the summer where a osteosarcoma cell was removed from his lung. Currently he is receiving immunotherapy of MTPPE. You may want to ask your oncologist about this drug. It is experimental and has been used inconjunction with chemotherapy treatments.
Steve had another spine surgery about three weeks ago, because the titanium rod in his spine broke as a result of the chemo and radiation treatments. Apparently the treatments prevented the bone from properly growing in his spine. He had to drop out of college, but he is okay. Going stir crazy, as any 18 year old.
I will pray for you and your son. I hope and pray that the cancer in your son's body will be conquered!
God Bless.
Angie
Comment by Tracie on October 27, 2008 at 11:48am
My son Kris was diagnosed last December with Osteosarcoma. He broke his arm playing football with friends and his brothers. When we went to the hospital, the xray's showed a tumor in his right arm. We were then sent to Vanderbilt Children's Hospital where they found more in his lungs. We were diagnosed Dec 3, and started chemo on Dec 21. He has had surgery on his arm and both lungs. He has had to have 2 of his hickman's remove because of infections. We were on Doxo, Cisplatin and Methatrexate. Those were only killing 20% so we started 2 new ones last month. He has lost some hearing and has hearing aids, but he is 17 and he doesn't think he needs them. They think a tumor is coming back in his arm and he has 2 new ones in his lungs. One is attached in away that could make it difficult for him to breathe. Any advice anyone can give me would be helpful. We have friends whose children are going thru cancer...but none of them have Sarcoma. God Bless!
Comment by Mandi on October 25, 2008 at 11:33pm
My son doesn't have sarcoma, but his best friend is surviving Ewing's Sarcoma at age 9 right now after relapsing and being treated with radiation, SCT, and chemo last year. He is 17 months OT and doing great. I know his cancer is rare but hopefully there is someone else at there that has joined that we can help or get feedback from.
Thanks,
Mandi
Comment by Angie Giallourakis on October 22, 2008 at 12:57pm
Hi,
Thank you for creating the site. I just realized that you had established with group. My son, Steven, was diagnosed with Stage 4 osteosarcoma at the age of 15 in March 2006. At that time, we were told he had less than a 35% chance of survival. However, with chemo, two spine surgeries and radiation he is now 18 years old and a college freshman. It was a tough two years. He has had one relapse this past summer where a small tumor was discovered in his lung. It was removed. He is currently receiving MTPPE, an orphan drug designed to teach the bodies immune system to fight osteosarcoma cells. The treatment will last a total of 24 weeks. He also had one of the rods in his spine break, so last week he has surgery to correct this problem. Thankfully, he is recovering well.
I welcome comments and questions. God Bless. Angie Giallourakis
Comment by Brenda Everson-Wiesman on October 18, 2008 at 1:16pm
Hello. Our son Drew has been in remission for two years from osteosarcoma. He is doing well. I am a member of Team Unite and work on have worked on helping to pass the CCCA bills and getting funding for pediatric cancer research by being involved with the CureSearch Walk we do in Omaha each summer. I follow a lot of families on the cb sites, some with kids with osteosarcoma. I want to help out and find a cure for this disease. Hi to Sammie and Shane's moms....
Comment by Michelle Recanzone on October 16, 2008 at 8:46am
My daughter Erika was diagnosed in June of 2005 with Embryonal Rhabdomyosarcoma in her head.( We were told the tumor could not be removed because of the location) She received 5 weeks of radiation, 42 weeks of chemo and is currently 29 months remission. She will go back to CHOP in Nov. Throughout her ordeal she never once asked "WHY ME." In July she wanted to celebrate her birthday and bring gifts, books, etc to the children at CHOP. So in August when she returned for scans we did just that, and now she has started ERIKA'S MISSION. This November we will once again bring gifts to the oncology clinic, kids on oncology floor, and movies to the MRI center. I must say the response has been great. We have schools, brownie troops, friends, family, and anyone else we can think of participating. It is Erika's dream to someday be a scientist, and help find a cure for cancer. For now she is happy making a difference. As a family we are not only bringing smiles to the children at CHOP, but we are raising awareness about this horrible disease. No child should have to suffer! Next year Erika's Mission will try and collect monetary donations for cure search.

I am proud to be ERIKA'S mom.
Comment by Dash Wallooppillai on October 1, 2008 at 10:36pm
My daughter was diagnosed with alveolar rhabdomyosarcoma in her calf muscle in June 2006, when she was 3 1/2 yrs old. She had surgery, radiation and chemotherapy for a year. She is now almost 6 years old and 16 months post treatment and in remission. She has scans every 4 months. Kids are so brave, it is amazing... they do not deserve to battle this disease nor have their lives cut short because of it. If there is anyone with a child going through treatment for rhabdomyosarcoma, I will be happy to be of support.
 

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