Paul had his first seizure in July of 2011. Five seizures and four MRI's later we were controlling Paul's seizures with medicine, but getting the heartbreaking news that he had a tumor in his left temporal lobe that would need to be removed. Surgery was scheduled for April 25th 2013 at Cincinnati Children's Hospital. The surgery was over 12 hours long and the surgeon was confident he was able to remove about 90% of the tumor. Pathology concluded Paul has a very rare Low Grade Glioma normally seen in adults and without the typical genetic markers in pediatric low grade gliomas. Never-the-less we were sent on our way after 1 day in the ICU and days in-patient with directions to continue MRI scans every three months to watch the remaining tumor.
Stability of the remaining tumor continued until November 2014 when enough growth had continued over several scans to warrant chemotherapy. Paul had his port placed in January of 2015 and started a ten week induction phase of Carboplatinum and Vincristine. After the induction phase we discontinued the Vincristine due to intense neuropathy and continued the Carboplatinum at an increased dose monthly. Paul completed 15 months of chemotherapy despite developing an allergic reaction to the chemo and needing over two hours of premedication prior to starting the three hour long chemo infusion. Paul also had to have several platelet transfusions towards the end (which he also had an allergic reaction to).
Unfortunately his end of treatment only lasted three months before further growth warrented another round of chemo. Since the Carboplatinum seemed to work well we decided to try again but three months later we were back in the same place with growth on our MRI so we decided to switch chemo protocols to Vinblastine (a weekly chemotherapy) in February of 2017.
Thanks for hanging in there with us on this journey! We were told it was going to be a marathon, not a sprint but this marathon doesn’t have mile markers and we have no idea how far Paul is on this journey.