Kiara's story began on October 20 when she complained of belly pain and chest pain, with an accompanying fever. The night leading up to this she woke up two times during the night screaming with a severe headache. We took her to the pediatrician and they ordered a chest x-ray to rule out the possibility of pneumonia. The chest x-ray showed a possible cyst, she needed a CT scan to further diagnose the pain. The doctor put her on antibiotics just in case it was pneumonia. Four days later she had a CT scan of her chest, which showed an 8cm tumor, most likely neuroblastoma. The following day we went to Children’s Hospital of Philadelphia (CHOP) to see a pediatric oncologist, they did blood and urine tests. We were told most likely the tumor was benign and we should see a surgeon for a biopsy to get the pathology of the tumor. We saw the doctor at CHOP on Monday, October 27, and he suggested that we schedule a complete resection of her mass. The surgery was on Wednesday, October 29th, and lasted 2 hours. Kiara did great. Approximately 95% of the tumor was removed. Kiara was on Morphine and she did well.
The next day we got the results of the tumor, it was a nodular Ganglioneuroblastoma, which is rare. Further pathology was needed to stage her cancer as well as more testing to determine if it has spread. The next morning she had a CT scan of her abdomen. Later that day she was discharged from CHOP, which happened to be Halloween. We received a call that night telling us that the CT scan of her abdomen was negative. She was scheduled for a bone marrow biopsy on Monday. The bone marrow biopsy was more painful for her then they thought it would be, but we went home the same day. She then had an MIBG scan which is a specialized nuclear scan that looks for neuroblastoma cells in the body. We got her results from her bone marrow biopsy, they were negative. All tests have been negative as far as the cancer spreading. But the type of cancer, Ganglioneuroblastoma nodular type, is so rare and it is the most aggressive type, which puts Kiara in a high-risk category.
On April 17 Kiara had a full resection of the tumor in New York. It was a success! Kiara has endured a stem cell transplant, 12 radiation treatments to her chest, 7 rounds of chemotherapy, numerous surgeries, 4 Central lines, and too many blood and platelet transfusions to count! She is a trooper and definitely the bravest 6-year-old I know! Next is a clinical trial of Humanized Antibodies, this will last 6 months. She will be hospitalized every few weeks. This treatment can increase survival rate by 20%! We are very happy we can get this treatment at CHOP and we do not have to travel to NYC.
Neuroblastoma is such a horrible MONSTER that relapses more than any other pediatric cancer. Please pray for all the children and their families fighting cancer.
Written by Kim Fox, Kiara’s Mother