Chemotherapy Stopped

Today's oncology appointment was important because we knew the disappointing news we were going to receive. Philip's situation is not without hope but the hope is now in getting selected for a clinical trial.

The latest NCI volumetric analysis of Philip's tumor showed approximately 12% growth over 4 months. So, over the course of his 9 months of Gleevec oral chemotherapy treatment the tumor grew about 18%. Gleevec did not work. It was a long shot at about 30% efficacy rate for other patients but it was our only option.

Dr. Reddy, Philip's oncologist, is sending medical records to the National Cancer Institute (NCI) in the hopes he may be selected to participate in a clinical drug trial for Selumetinib Sulfate, or AZD 6244 which is much easier to pronounce. Dr. Korf's office at UAB is also sending all of their records.  We know several families that are current participants in this study and they have shared that their children's tumors have often not only stopped growing, but are SHRINKING while on treatment. At least three of these children have neck tumors very similar to Philip.

We have emailed the principal investigator (recipient of the 2013 Children's Tumor Foundation's Friedrich von Recklinghausen Award) as well as the study administrator. We hope to hear back very soon about how viable this trial is for our son since his physicians consider his prognosis very strong for inclusion. He meets all trial criteria. So now, we wait.

It was very disappointing to leave Dr. Reddy's office today with no return appointment scheduled. But, we are very thankful for everyone that came into our exam room to offer encouragement. That includes Jeff Barrett, Children's Social Worker who always provides us with ways to keep our spirits up; Sasha Ramini, Dr. Reddy's awesome nurse practitioner who knows all my coolest girlfriends; as well as Dr. Reddy herself, who we cannot not say enough good things about. Her commitment to research, collaborative approach with colleagues, strong understanding of clinical trials, and encouraging personality continues to be a blessing to our family.

So, we are not completely without hope, but remind ourselves and everyone that has been praying for Philip that despite the tumor's continued growth, he continues to experience no pain, no discomfort, and is closely monitored by the best of the best in medicine right here in Birmingham, AL. We are so proud of Philip's strength throughout his medical challenges, and his ability to always stay goofy and see the humor in life. Thank you for your persistence in prayer for our son.