As of the last update, Trey was experiencing symptoms that resembled pre-surgery symptoms. Since then Trey has had two MRI's and has started radiation. After a concerned call (yes Shandy's crazy) to the oncologist, he agreed that these were something to worry about. He ordered a MRI, the findings came back with swelling. Although it was causing physical ailments, this was a good sign. This meant Trey was healing and was able to start radiation. Oncologist prescribed Trey some heavy anti nausea meds. Trey started radiation the following day.
After a few treatments the nausea medicine could not keep up with Trey. The symptoms became so violent that Trey was unable to go anywhere without a close bathroom. Our next appointment we let the oncologist know what was going on. He explained about their are two nausea points on the brain stem and how the radiation could make them "upset". He upped Treys dosage on the nausea medicine as well as prescribed him a catabolic steroid. This new cocktail seems to be working, but comes with other problems. A catabolic steroid not only breaks down the inflammation, it breaks down the whole body. Trey's skin is very sensitive and is now bruising easily. But we will take some sensitivity over nausea and throwing up. We are know 3 weeks down with radiation! Besides the sensitivity only other side effect is exhaustion. This is to be expected.
Now for the BIG news! We met with MAYO! We finally were able to get in this past Monday, the 17th. We couldn't be happier with the news we received from Mayo's neuro-oncologist. He agreed with Trey's treatments, stated they would be doing the exact same. He stated not to stress over the vision, balance, and minor paralysis. Said those are fairly common with brain surgeries on/around the brain stem. He also gave us some timelines to look towards. Our family likes facts and numbers. He told us about what NIH and M.D Anderson (2 groups specializing in brain tumor research) have been findings in their longitudinal studies. Typically if a patient who has had an ependymoma and it does not show prior to three years after surgery, chances drop drastically in seeing it again. If the tumor occurs within that three year gap, it seems to become more of a threat. Another statement made was that radiation has shown to be much more affective than chemo, so that was reassuring. He also suggested cutting back on the steroids as this causes more issues down the road, he suggested some alternatives in diet as well as vitamins. Next week we start to cut back the steroids to once a day and subbing in the vitamins.
Overall we are happy to hear the support from an "expert". We are happy to have this timeline to follow and extra information as a little glimpse of what to expect in our future.
As the doctor said, I've done this a very long time. The best advice I can give is be positive, negativity can kill you.
"You can't connect the dots looking forward; you can only connect the dots looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something - your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life"
~ Steve Jobs
The Thompson Family