Update: I am sorry to have to add this update. Jason lost his battle with rhabdomyosarcoma on August 25th. I cried and cried the day that Pam wrote me. Pam and her family are grieving the loss of Jason. In her writings she states "There is a huge emptiness that only he could fill." He was such a great kid; I am sure that there are many friends and relatives that feel that way also. Pam is driven to continue her work to help funding for Rhabdoymyosarcoma Research. Please consider honoring Jason's life by donating to this research fund.
Original Story: Rhabdomyosarcoma is a rare, very aggressive childhood cancer. About 250-350 children in the US are diagnosed with it each year. Everything about Jason's cancer is the worst: Stage 4, alveolar, t(2,13) his age, site of primary, and being spread to bone marrow. Often the cancer responds well to chemotherapy at first and then relapses. We urge you to read Jason's story (below) and hopefully you will be motivated to donate to Rhabdoymyosarcoma Research.
Jason was diagnosed on 2/6/04 with Stage 4 alveolar rhabdomyosarcoma t(2,13) translocation with
the primary tumor in his left foot, but it was not swollen or painful. It had already spread to
bone marrow and those were the symptoms we noticed. He was pale, tired, short of breath and had
pain in his sternum.
He began chemotherapy that day with VAC -vincristine, actinomycin-d and cytoxan with an overnight hospital stay every 3 weeks. Originally his bone marrow showed 100% replacement of all blood making elements with cancer cells, but by 4/9/04 the bone marrow was clear.
During the months of May and June Jason had radiation to his foot for 28 days. Scans on 7/30/04 showed that cancer cells had returned to fibrotic tissue in the bone marrow, so he had relapsed and chemo had to be changed to cytoxan-topotecan 5 days a week every 3 weeks.
Jason had clear scans on 10/1/04 and 11/17/04--which means complete remission--no detectable cancer. He has had 9 months of chemotherapy. The main side effect for him was nausea which got worse, so he quit the new chemo early after 4 rounds rather than the prescribed 8 rounds. We, of course, wish that he had finished the standard and recommended regimen, but since he is 18, the decision is up to him.
Over the last year, Jason has had to endure constant rounds of chemotherapy that make him nauseous, weak, and sometimes so sick that he has to be admitted to the hospital. He underwent radiotherapy treatments that caused weeping blisters and did not subside until quite some time after the treatments were ended. He had to learn how to give himself IV medicines through his port to help with the dehydration caused from the constant vomiting. Through all of this, he has suffered from depression, memory loss, and the constant feeling of being out of touch with his 'normal' life. And, of course, he is!
His mother recently wrote to me this very poignant account of what she is going through. "It seems like I am always on the verge of tears. I know it is not a good way to be, but I can’t help thinking about missing Jason, even though he is still with us. I hear his little sister laughing with her friend and I get to thinking about how Jason won’t be here to watch her grow up. I think about how he will fade from her memory (she’s only 10)."
"He is in his room now talking and laughing with his friend, Walter. Oh, how I love to hear him laughing. I love his blue eyes. I love him. To think of him lying still and cold, his voice ever silent, his eyes closed is breaking my heart every day. I think of how he has suffered this year and for what? One extra tortured year of life! But no cure. That makes me cry too."
She quotes Professor Archie Bleyer, from MD Anderson - "Worldwide, we need a new discipline in adolescent and young adult oncology. This age group deserves trained care providers, specialized clinics and inpatient units, and probably most importantly; dedicated research strategies that are not available with either pediatric or adult care programs."
Through all of this, Jason's family has not wavered in their Faith. They pray for a healing for Jason. We ask that you pray for an earthly healing for Jason and his family. Visit their Guest-book and let them know that you are praying.