A lesson in pharma

Jack’s tumor was sent for molecular testing - & the results were positive for BRAF V600E mutation.
We are extremely fortunate to have found ourselves living only a half hour from Johns Hopkins, this is just part of their standard protocol.
The need for broader molecular profiling for diagnosis is imperative.

Jack’s tumor cells were sent to multiple places and one of those was the National Cancer Institute’s Data Initiative.
Right before we began Jack’s targeted therapy, the NCI’s results came back negative for the mutation.
This is rare, so our Hopkins team expedited an in-house test to confirm.

Our team had been at the forefront of this research and knew what needed to be done to keep Jack safe.
Had his tumor not had the mutation, Jack’s tumor could grow because these medications would act as fertilizer.

Precision medicine & biomarker research continues to evolve and expand. But Jack’s mutation seems to be a very understood pathway & a common mutation in several cancer types. The part that folks don’t understand currently is why tumors start to be resistant to therapies…

After years of research & clinical trials - the FDA approved the targeted therapy drugs for pediatric low grade gliomas right before we were to begin.

FDA Approves Dabrafenib Plus Trametinib for Pediatric Patients With BRAF V600E–Mutated Low-Grade Glioma

I know God has a plan for Jack & that timing is everything.

Without the continued research & success in clinical trials, Jack would have had to go through traditional chemo therapy.

Traditional chemo is known for being harsh, intense and having significant long-term side effects.

These traditional treatments can work for some cancers but historically did not yield good results for pediatric brain tumors.

Jack began treatment on May 4th, 2023 and we saw shrinkage by September 2023, but stability since then. His next scan is September 26th, 2024.

Jack’s treatment will likely be at least 2 years, maybe longer, we just don’t know…