I received a call from Dr. Viskochil (Travis' Geneticist) this afternoon, not great news, Travis' plexiform increased 23% over the 15 courses of the trial. This means Travis no longer qualifies for the trial. :( Although the tumor volume increased since starting the trial, we (us and geneticist) suspect that the increase may be mainly due to Travis growing. As Travis grows, the plexiform grows...the cells get bigger, not necessarily an increase in the number of tumor cells. The MRI shows tumor area, but not number of tumor cells.
The study does not differentiate between tumor growth due to child growth and tumor growth in child, tumor growth is tumor growth no matter the reasoning. Travis' geneticist is trying to change that for future trials as we saw benefit for Travis when you consider that he's growing. Travis' plexiform increased 33% in 6 months before the trial and a little over 20% while on the trial.
Where we go from here...Travis will have another MRI in 3 months to monitor tumor growth. This MRI will be sent off for analysis to see growth over 3 months being off the trial. Based on all we know, the geneticist will follow T closely. After 3 months, we will see how the plexi is doing, if Rapamycin is approved by the FDA for this use, and figure out what to do based on all the info we have. The geneticist and others involved with the trial will be speaking with statisticians this week to see if they are close to determining if Rapamycin is effective in slowing down rapid plexiform growth.
Travis will continue to be followed by the study for a little while and will have more labs drawn in the next month to see how his body returns to life after rapamycin. They are checking to see if his levels go back to where they were before starting the trial.
I'm glad we are so close to his medical professionals with this development. God placed us here, so I can rest knowing He has it all under control. Yes, I feel like the wind is out of our sails, but we will find another route and continue.
As for T's illness...his fever increased to 104.9F this afternoon, so another phone call to the pediatrician's office. They said to watch him closely and to alternate tylenol and ibuprofen every 3 hours and push fluids. They have seen kids with that high fever recently, but check in with the on-call doc tonight. We talked with her and his fever came down and he did want to eat dinner. She said to keep up with what we were doing and call their office in the morning. If Travis was to get worse tonight, we should take him to Primary Children's. T did want to play a little with cars tonight, so that is a good thing.
I know God's in control for this new journey in Travis' and our lives. We are where we need to be and T's docs love him (and he loves them). Thank you for all your prayers and support.
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