Thursday, February 28, 2008

Address for Kevin

Here is the address if you want to send letters or packages to Kevin.
This address will be good for the next 6 weeks (until April 14).
Ronald McDonald House
Kevin Saarela
Room 22
535 Alabama Avenue
Memphis, TN 38105
Currently Rachel, Eric, and Jake are staying with Kevin. They moved into the Ronald McDonald house on Tuesday (Feb. 26), filling the Taurus X with so much stuff that there wasn't room for Jake and the stroller! Rachel and Jake had to take the shuttle bus over the the Ronald McDonald house separately. (It's not on the hospital campus, maybe 1/2 mile away.) That same day Scotty and I drove back to Michigan in 12 1/2 hours through rain and snow. Scotty is a great little traveler.

Kevin is undergoing a repeat of all the tests he had done in Detroit. New MRI scans, another lumbar puncture (spinal tap), and other things. The doctors here have some equipment that is more advanced, and they just want to make sure nothing gets overlooked. We are encouraged because it seems that Kevin's primary care docter here at St. Jude (Dr. Gajjar) knows the neurosurgeon who removed Kevin's brain tumor in Detroit (Dr. Sood). That should facilitate communication between the two hospitals.

I am very impressed with St. Jude's. The facility is amazing, especially with the addition of the new Chili's Care Center (where Kevin has been spending a lot of time). The people here go to great lengths to make Kevin and the rest of the family feel comfortable. The doctors dedicate long sessions to answer our questions. The radiation oncologist (Dr. Pai) even pulled up Kevin's MRI scans from Detroit and explained what they show and what they are missing (thus the need for supplemental MRI scans now that we're in Memphis).

So a radiation plan has been developed. They will radiate Kevin's entire brain and spine for two weeks starting next week (March 3). Then they will localize the radiation specifically on the tumor site for the remaining 4 weeks. All told, there will be 33 days of radiation therapy with a schedule of 5 days on, 2 days off. Each treatment will last only 15 to 45 minutes (longer for full brain and spine, shorter for just the tumor bed). The only immediate side effects will be fatigue and hair loss in the small area where the photon beam enters his head. The longer-term side effects will be cataracts in his eyes, high frequency hearing loss, reduced output from his pituitary gland, and reduction in overall intelligence. Maybe some other things that I can't remember. All pretty bad stuff.

The immediate problem we are having has to do with Kevin's port. The port was put in the middle of his chest (under the skin) and it runs right into a main artery then into the heart. It's there mainly to deliver chemo drugs, but can also be used for drawing blood. The problem is that this port is rather large and it sticks out of his chest. For the radiation treatment, Kevin is supposed to lie flat on his stomach. But it hurts to lie on the port. They tried putting a donut-shaped pillow around the port to ease the pain, but it's not working. Kevin is way too tense and bent over from fear of pain. If he even moves 1 millimeter during treatment, the radiation will not go where desired and the treatment will be compromised (not to mention the radiation might go someplace where it will do damage). So he will have to be sedated during the radiation treatments. This is not desireable, because he can't eat for 4 hours before the procedure, then he'll feel nauseous for hours after the procedure. Rachel, Eric, and the nurses will continue to work with Kevin to try to make him comfortable on his stomach, but we are a long way from that right now.


1 comment:

Michael said...

Mike, Rachel, Kevin and family,

We are still thinking about you and sending prayers of hope and comfort your way. You and Kevin will find a way to make the radiation comfortable for him. Just a random idea but maybe tell him something like he is a Jedi Knight and he can imagine the radiation is his light saber. That along with the power of the "force" and his confidence will be where it needs to be to get through each session.

I am so glad you are happy with St Judes. It will help you better trust your medical team so you can eventually focus on other important things too. Keep up the great work and remember to get some rest too (all of you). We are still hear for you. You have strength in numbers.

- Mike DeGuire and family