Imagine your worst nightmare multiplied by two.
We were told that the reason our 10 year old son couldn't walk anymore is because of a large mass showing on a CT in his abdomen area. After more tests, doctors at Children's Hospital of Pittsburgh told us that the mass was a large neuroblastoma tumor completely encompassing his left adrenal gland and the other tests revealed evidence that the disease had metastasized to other locations in his body. For this reason, he was diagnosed with Stage IV neuroblastoma and was given a very poor prognosis. Despite the odds being stacked against him, he endured primary tumor resection surgery, 11 rounds of high dose chemo, 5 weeks of radiation, 3 rounds of 3F8 monoclonal antibodies, 2 stem cell harvests/ transplants, and seemingly hundreds of tests, scans, bone marrow biopsies and transfusions. As his extra bonus, he was given the opportunity to share this experience with his sister in a very unique way.
6 days after Adam's initial diagnosis on 12-15-99, his sister Amanda was brought in for a horrific cough and drooping right eye. Radiologists at a local hospital thought the shadow on Amanda's chest x-ray could have been pneumonia, but CHP radiologists thought something different. Further tests revealed that it was, in fact, a lemon-sized ganglio-neuroblastoma tumor pressing on her sympathetic nerve in her chest. Although the tumor had stayed local, surgery to remove it was dangerous because of the close proximity to her spinal cord. Despite this, Amanda was given a much better diagnosis (Stage III) and prognosis than her brother. Amanda endured her tumor resection surgery on 12-21-99 and was released from the ICU in time to join her brother on Christmas day in the CHP Oncology Floor so Adam could start his first round of chemo. For the next 4 months, Adam and Amanda alternated inpatient stays at CHP to recieve their chemo treatments. Needless to say, this was an unbearably stressful time for our entire family.
Despite the fact that he had to "share" his cancer experience with his sister, Adam never truly gave up fighting until his body completely failed him on 1-8-04. There were times that I think Adam and Amanda's unique experience gave them a bond like no other.
Although a part of my soul died along with Adam, the remaining portion has grown to not be afraid to face my grief and to embrace the hope that Amanda represents. Team Odyssey emerged from this combination of grief and celebration. Even if one child or one family is saved or assisted by its work, then its mission will have been accomplished.
By; Laura Boyd (Adam & Amanda's mom)