Results...Not What We Expected

Travis saw Dr. Viskochil this morning for his December Rapamycin appointment. As usual, blood draw and donut before the appointment.

One "poke" today

Mmmm...sprinkled donut

Dr. Viskochil received the Volumetric MRI results Monday, Travis' tumor continued to grow at a faster rate, ~40% in 6 months (Apr-Oct). This is the first time I had tears in my eyes during the appointment. Looking at the MRI volume changes with all the MRIs, this is the fastest increase captured on volumetric MRI scans, previous was 33% from Jan '09 to Jul '10 when we first considered the rapamycin trial. Scott and I talked with Dr. Viskochil at length about the different options for Travis and where we go from here. We decided to stop Rapamycin since we aren't seeing benefit. Our options...in no particular order and clinical trials are based on enrollment availability and eligibility age

• Peg-interferon clinical trial at NIH (National Institutes of Health)
• MEK-inhibitor clinical trial at NIH
• Do nothing - not really an option I'd like to pursue
• Gleevec trial at Indiana University - not sure if Travis would qualify for enrollment and all follow-ups would have to be done at Indiana - not really an option

Dr. Viskochil will contact his colleagues at NIH and see what options they have for Travis. The good part about clinical trials there is that that location is part of the clinical trial consortium and we should be able to do the follow-up appointments in Salt Lake City, also a consortium site. The trials at NIH may also include travel for Travis and one parent. We will verify these before any enrollment. 

Dr. Viskochil also wants Travis to see a local oncologist to have them as part of the team, they will help with follow-ups for clinical trials. We are waiting to hear from their office. This is for the drugs they we are considering are stronger and an oncologist would be well-versed in the side effects and how the drugs affect kids, NOT saying the tumor is turning cancerous. 

Travis continues to guard parts on his left leg and we're not sure if that interfered with the reflex exam today. Dr. Viskcohil noticed some cross-over on the reflex check, so he will also review the October MRI to see if there is any tumor involvement in the spine. Praying all is fine in the spine and that Travis is guarding. We notice that Travis' left upper thigh is bigger than the right, more noticeable now that a few months ago. He also noted some weakness in Travis' left leg that may not have been there before, Travis is stronger now than he has been in the past few weeks. Oh, the irony...

For now, we pray and hope we can get things moving as quick as possible so that the rapamycin exits T's system and we can be ready to go for the next stage.

The plot of T's MRIs over the past 3 years.