It all started with very small seizures. We are not sure how long she had been having them but they were getting more frequent. On April 23, 2009, we took her to Dr. Baker who sent us to the ER at Arkansas Children's Hospital. An MRI revealed a large brain lesion and Abby was taken to the ICU for 3 days. She moved out of the ICU and spent a total of 8 days at Children's. We saw several doctors who were all pretty stumped by what they saw. It didn't look like anything-tumor, infection, swelling. They put her on an anti-viral medication in case it was infection. Another MRI showed no changes. Some doctors thought it was gliomatosis cerebri but some didn't agree with that diagnosis so they decided to take some spinal fluid to analyze. They had to take it from the brain though because of possible swelling. We spent another night in ICU.
After she was discharged we contacted MD Anderson in Houston and St. Jude's. We flew to Houston where another MRI was performed. They informed us that it was gliomatosis cerebri. St. Jude's called later that day and informed us that they felt it was gliomatosis cerebri. That was not what we wanted to hear-gliomatosis cerebri has a 5% survival rate. However, St. Jude's neurosurgeon, Dr. Boop, wanted to try to remove some of the tumor. This allowed for a biopsy of multiple pieces of the tumor. On May 22, 2009, Abby underwent brain surgery. Almost all of her right temporal lobe was removed. Abby had to spend another night in ICU, this time at LeBonheur in Memphis.
The biopsy results surprised us all, it was not gliomatosis cerebri, it was a low grade glioma! God had answered everyone's prayers! The plan was to begin chemotherapy to stop the tumor from growing but our neuro oncologist, Dr. Armstrong, wanted to wait a few weeks to see how this tumor was going to act. We were once again surprised-the tumor wasn't growing. No need for treatment!! And that is where we are today. It has been over a year, and the tumor still has not grown. It's still there, big and nasty, but it is quiet right now. We go to St. Jude's every 3 months for an MRI and other appointments to monitor the tumor.