Wednesday, January 16, 2008

Wednesday Update

Steve, Kim and I went to UW Madison again yesterday. Dr. Mehta's team determined that it is in fact a Glioblastoma Multiforme. They also confirmed that Dr. Crute did an excellent job of excising the largest mass and they will not be performing any more surgery. Steve signed the papers for enrolling in the clinical studies for this brain tumor, so we now have a plan -- something to work towards. He has to go back on Friday for another scan and to mark the area for radiation. Next week will be some final papers and testing sessions. We think radiation and chemo will start January 28. He will have radiation 5 days a week for 6 weeks, in Madison -- the radiation only takes about 20 minutes, so it will be a drive up there and back every day and they'll work out a schedule for us volunteers to drive. He'll also start on the chemo that day -- it will be in pill form and he will take it 7 days a week for the full 6 weeks. Then he'll have 4 weeks off and then begin the chemo clinical study - which is random. He will either be taking chemo 5 days in a row and have 3 weeks off, or a lesser dose for 21 days with 1 week off, for a total of 6 - 12 months. There are no placebos in this study, just different doses of the chemo. He will have periodic scans during this time to check on progress. So now we start praying for remission.

I also had to take JR in for his anterior cruciate ligament repair yesterday morning before we left for Madison. Bill picked him up in the afternoon. He was pitiful last night -- still groggy from the anethesia, cone on his head that he hates, and very sore leg. This picture was taken a few minutes ago. He's still adjusting to the cone and he still looks pitiful! And the back leg that has been shaved is the one with the stitches. He has to go back next week for a check and in two weeks he'll get the stitches removed, so he's going to have to wear than cone for two weeks. Feeding him tonight should be interesting. He did take a "Beggin' Strip" from me this morning though! And so far, he drinks water if you hold the bowl up to him -- but he's going to have to learn how to negotiate the cone and water bowl soon. And it's really getting cold here, so he's going to have to learn to take care of his business a bit faster -- instead of checking out every last oak leaf that has fallen since the beginning of winter!

Things I love:
2. Antique crocks.
Finally having a plan and having Dr. Mehta explain a few things about this type of brain cancer. We all felt a bit more knowledgeable after his explanation.
Dr. Ian Robins (who prefers to be called Ian), the oncologist in charge of the chemo -- he explained what to expect. It's always nice to get a little insight on what to expect.


Laurie Ann said...

Isn't it nice to have a PLAN. It actually makes us feel like we are doing something. And you are! I'll continue to keep him in my prayers.

As for JR, I hope he heals up quickly. You should be able to take the cone off for meals. As long as you are watching him. Roogrr had the cone a little while ago. What a pain!!

Kristie said...

We are still praying for your son and your whole family. I hope all goes well.

Your little dog looks so pitiful! I feel sorry for the little fellow. I'm sure he will pep up soon.

Bren said...

Sounds like things will flow now that the plan is in place. You have my prayers!

freshtopia said...

Hello, Oscar Grimm here. I don't know any of Steve's story, but thought I'd mention that I was diagnosed with GBM about 11mo ago. I’m just getting back from 3.5 weeks traveling over the holidays and have about 300 emails to get back with, so I'll make this quick. I had an MRI on Dec 10 and it showed significant tumor shrinkage, after 7mo of no conventional (American) treatment.

I've studied and learned a lot in the last year, and am now (aside from some residual right-sided weakness from surgery) feeling better than I have felt in roughly 20yrs. I’m learning a lot about all this mess, and am happy to share what I’ve learned. If you or steve would ever like to share research, or even just chat about common woes, please do feel free to give me a call or email. 510.922.1900

Health and Happiness to you. The mind is an amazing machine,

Evelyn aka Starfishy said...

Great to have a plan! You are lucky to live so close to great medical facilities. When I would go with my Mom to Boston there were people in the waiting area from w-a-y far away, going through treatments by themselves and showing photos of their kids at home to me. So much better to be able to stay near your family. And I read the comment from Oscar - isn't it wonderful that complete strangers reach out to help?

cher said...

the news continues to sound better and better on the Plan and about the doctors very lucky to live close enough to drive and get treatment etc...wish I could be part of the volunteer efforts...I know what it meant to my mom to be driven for chemo rather than fend for herself.