Thank You

Thanks to everyone for exploring your contacts and sending us so many ideas. Unfortunately, Kevin isn’t able to travel anywhere for appointments because he is so immobile and fragile, and we’re finding that he qualifies for virtually no clinical trials because of how ill he is. Most clinical trials have requirements regarding mobility, bloodwork, having been off chemotherapy for a certain amount of time, and so on. The tragic thing is that today's cancer treatment and support network hasn’t yet evolved to deal with such an aggressive medulloblastoma that essentially paralyzes patients within a few weeks.

The most recent chemotherapy that Kevin tried did not sit well with his GI tract; acid reflux, indigestion and heartburn made him very uncomfortable for the past week. Kevin’s doctors decided to switch him to yet another chemotherapy that we will attempt to administer from home. Today was the first day we gave him this agent, and we hope it won’t upset his digestive system as much as the previous chemo.

Today we also made the switch to Hospice. The switch was a bit more hectic than we had anticipated, for they came into the house to switch out hospital beds, wheelchairs and other equipment. After adding the Hospice transition and the new chemotherapy onto the general duties of taking care of Kevin, everyone is exhausted.

Kevin has remained in bed most every day for the past several days, and he is still unable to speak. He has been listening to a lot of audiobooks, and he wants to spend nearly every waking moment holding Kathlin’s hand. She is an incredible source of strength and support for Kevin. Kathlin’s mom has been out here this week, and she has also been a huge help.

Again, thank you to you all for your research and love. Keep sending Kevin your best wishes and prayers.