Week 1.5 at Valley

Santa Clara Valley is doing its job and tiring Kevin out! He has been working extremely hard, and he’s been rewarded with chocolate puddings and lollipops. However, even these rewards are tough work; when you think about it, Dum Dums are good exercise for your tongue, mouth and swallowing coordination.

Kevin’s attention span has also lengthened considerably. This weekend, he was able to start and finish two movies: Super Troopers and Snatch. Kevin practiced speaking by explaining Snatch to Kathlin, who hadn’t seen the movie enough times to get past Brad Pitt’s speech and understand what’s really going on. Today, Kevin felt up to watching about half of a Colbert Report. He’s no longer afraid to laugh!

Kevin has some great goals driving him forward. Besides wanting to eat again, he also desperately wants to get back into a normal wheelchair. For the last several weeks, he has been in special wheelchairs that have high backs, head support, recliners and other fancy gizmos that are supposed to help. In reality, these additions make Kevin more uncomfortable. Kevin has needed these chairs because his neck muscles were so weak that he couldn’t support the weight of his head. However, he has been working very hard on sitting up straight and holding his head up by himself. He’d also like to be able to propel himself, and he can’t easily do that in the wheelchair he has now. We hope the therapists will allow him to move to a regular wheelchair sometime soon so he can be more comfortable and work towards gaining more independence by wheeling himself around.

I often slip into trying to make the situation sound better than it really is, so this time I’m forcing myself to include the negative bits of news we’ve recently received. Kevin has been started on some antibiotics for a possible urinary tract infection. This has been a repeating issue in the past few months, and we’d just like it to get under control and go away (such an easy thing to say, such a difficult thing to do).

Also, today Kevin started fearing that he was weaning off his steroids too quickly. He has been on steroids to reduce the swelling around his tumors. Any extra swelling in his brain stem hits new nerves and wreaks havoc on his motor skills, so the steroids have been trying to keep swelling to a minimum. This evening, Kevin had a hard time swallowing and felt that his coordination was off, so he was afraid that the swelling was increasing. We alerted the doctor to this, and she is keeping a close eye on Kevin’s symptoms. Kevin has gone through two other unsuccessful attempts at weaning off steroids over the past six months. Each time he reached a low dose, the swelling increased and disaster struck, so he is justifiably gun shy about actually getting off the steroids. He definitely wants to be rid of them because they really mess with his mood, but he doesn’t want yet another setback.

*Disclaimer*
This is my first long-distance post from San Diego. I am no longer a direct eyewitness of Kevin’s journey. I have returned to UCSD for spring quarter, but I will be making frequent trips north to see Kevin, Kathlin and my parents. I will check in with them each day to hear updates and stories, and I will continue to relay the news to you all via the blog. Thank you for keeping up with Kevin’s progress!