In July 2013, we received the terrible news that Greg had Thyroid Cancer that had metastasized to his lymph nodes. He had multiple tumors on his thyroid, the largest one growing into his neck muscle on his left side. On August 1, he had a Thyroidectomy, including the removal of many lymph nodes on both sides of his neck and a portion of his neck muscle. Six weeks after surgery, they did post-op ultrasounds and discovered two more suspicious spots in his neck that are “likely cancerous lymph nodes.”
On Dec 4, he started Radioactive Iodine (RAI) treatment and will have a body scan and ultrasounds to check for any remaining cancer. If the spots in his neck are cancerous, they are likely too big to be killed by the RAI, which means a second surgery or further cancer treatment will be necessary. But we won’t know until he completes the RAI treatment and the subsequent scans 3-6 months from now.
In October 2013, Emma began complaining of stomach aches after eating. She was diagnosed with constipation and, after lots of Miralax, a GI specialist, 2 ultrasounds, enimas, more Miralax and a growing belly, she was admitted to the hospital in Wilmington on Oct 26. They did a CT scan and discovered a softball-sized tumor in her abdomen. She was taken by ambulance to University of North Carolina Children’s Hospital at Chapel Hill at 3am on Sunday, Oct 27.
On Monday the 28th, she had exploratory surgery, during which they drained 6 liters of fluid from her abdomen to be able to see the tumor. Once inside, they could also see many, many Small Round Cell Blue tumors (implants) covering the inside of her abdomen. Tissue samples were taken and sent for analysis. They also did several baseline scans (Bone, PET, CT), blood tests, and bone marrow biopsies. On Oct 30, we received the devastating diagnosis. Emma has Alveolar Rhabdomyosarcoma (ARMS), stage 4. It is an aggressive cancer that requires intensive treatment. The size and location of the tumor in her abdomen, combined with the pervasive small tumors, made it inoperable. The bone and PET scans revealed tumors on her spine and bone marrow biopsies showed trace amounts of the cancer cells in her marrow.
Emma will be receiving intense Chemotherapy every week, at UNC Children’s Hospital in Chapel Hill, about 2.5 hours from home, for 52 weeks. Due to the advanced stage, they started her on the 7th week’s treatment, so they are wasting no time. Her treatments will generally start on Fridays and last either 1, 2 or 5 days. Some will be outpatient treatment at the clinic next to the hospital (requiring hotel stays) or overnights at the hospital. Following the 52 weeks of chemo, we have been told to expect at least an additional 12 months of frequent tests and follow-ups, requiring travel to Chapel Hill.
Over the next 24 months, the out-of-pocket expenses related to the weekly trips to Chapel Hill (including gas, food , lodging, parking) and the medical and prescription costs not covered by insurance are expected to be quite large. We are setting a fundraising goal of $100,000. We have received many inquiries from generous friends, family members and colleagues , asking how they can help financially, so we opted to set up this fundraiser to facilitate donations. I know it is cliché to say “no amount is too small,” but truer words were never written. We are incredibly grateful that you would want to give ANY amount. Thank you all for your prayers, concern, support and friendship. It means the world to us.