Alterations

Within the last few days, there have been a couple changes to Kevin’s medications that have improved how he feels and functions. I mentioned in the last post that Kevin felt he might be tapering off the steroids too quickly. The next day, the doctors and the rest of us came to that conclusion as well, and Kevin’s steroid dosage has been increased slightly to keep some extra swelling down. He has felt better, and his swallowing and talking has improved since that change. The other issue was that Kevin might not have been on the correct antibiotic for the last several days. The one he was on has some neurological side effects, which are exactly the side effects we want to avoid while he is already so neurologically compromised. Once Dad realized this, the doctors were happy to work with him to smooth this problem out.

After these changes, Kevin’s stubborn attitude has returned in full force, which we take to mean that he’s feeling much better. It takes a lot of energy for Kevin to stand up for himself and tell people that they’re pushing him too hard or that he’s reached his tiredness limit. A healthy Kevin told to work this hard would definitely put up a fight, so we’re glad he’s feeling enough like himself to do that.

The next couple events that we’re all holding our breath for are Kevin’s MRI and appointment with his neuro oncologist tomorrow. It will have been four weeks since he finished radiation, so it’s time to take an MRI and see how the tumors have responded to treatment. Tomorrow, Kevin will also receive a chemotherapy plan from his neuro oncologist. Of course, I’ll post the results of both these big events as soon as I hear anything. We’re preparing ourselves for just about any news. Unfortunately, we’ve been surprised with bad news too many times during this process. We have to walk the fine line of preparing for the possibility of bad news while desperately hoping that things are dramatically improving.

To end on a better note: today, I got a call from Mom, and for the first time since December, she passed the phone to Kevin. Today was my 25th birthday, and Kevin sang me “Happy Birthday.” Mom said he had been practicing the song for the last couple weeks. It was amazing to listen to Kevin sing, much less enunciate the “s” in my name (which he hadn’t been able to do before I left). This moment of Kevin’s dedication, practice and love is what I’ll be thinking about tomorrow as Kevin goes into his MRI and neuro oncologist appointment.