Friday, May 09, 2008

Update on Elise's Medical Conditions

After talking with a friend last night, I realized that we have been focusing so much on Elise's fun family activities that we haven't really posted anything about how she is doing medically. So, here's some information.

On Wednesday, Elise goes back to the UW Medical Center for an MRI. The MRI will help the doctors determine how effective her previous 60 radiation treatments were. We expect to learn that the radiation therapy was very successful based upon the right-side function that Elise has regained ... that is, we expect to hear that the tumor is smaller. The results of the MRI will also help the doctors recommend next steps to shrink the tumor ... or at least keep it from growing any more. Those treatments will likely include additional radiation in treatments called "gamma knife" or "stereotactic radiation" ... it's basically a very pinpointed and intense radiation treatment directed at the tumor. We also expect them to recommend chemotherapy with a drug (temodar) that has proven effective for GBM patients.

Since Elise has been home she is needing less pain medication and has completely tapered off a very strong steroid (decadron). She is doing well, but now becomes tired more quickly without the steroids. Elise's steroid-caused diabetes is slowly going away, as is the steroid-caused facial swelling. The doctors get regular blood draws to monitor Elise's anticoagulant levels to make sure she's at the correct dosage of blood-thinning medication to prevent future blood clots, yet not so much as to cause the brain tumor to bleed out. The only other meds that Elise is currently taking is to prevent seizures.

Elise is a pro at spending many hours in the wheelchair, moving around her apartment doing chores, exercising, caring for Jasper, spending time on the computer, taking trips in the van, and just hanging out. She's become quite skilled as a "lefty." The only challenge has been some swelling of her feet and legs from sitting for so long ... but, based upon discussions with her doctor, that's just something she's going to have to manage with compression socks and lying down to raise her feet above the level of her heart.

Elise is amazing as she is learns to deal with the short-term memory deficits caused by the tumor ... keeping and referencing a calendar of her daily activities, confirming the status of her plans when unsure, and working with us to find the words she wants to use. Her intelligence and positive attitude serve her well as she deals with this challenge.

Cameron has taken on the lion-share of the day-in-day-out caregiver activities (even with a back strain), having me over so he can run errands, take Elise to her doctors appointments, and to just get a break every now and again. Also, a home nurse checks in each week and a physical therapist is available on a very limited basis.

Thanks to all for your support and I look forward to seeing you at Monday's benefit. Suanne (Elise's Mom)


Anonymous said...

Hello All of you in Seattle:
I'm so glad you updated us on the medical. Its so good to know what is up and it helps when I try to explain to concerned people down here.

I'm so glad you are doing well, Elise and you get to enjoy you family and friends now.

We send our love from Santa Cruz Land and hope all goes well with the benefit.
Love, Gma Judi

Ceri said...

Thanks for the update Suanne! Our thoughts and prayers continue to go out for all of you. Elise - we love you so much! Hugs to all,
Love Ceri & Paul & Spencer

Anonymous said...

good luck. fyi - elizabeth's dance dimensions is doing a benefit next sat night for fred hutch...the owner of the studio's sister had an inoperable brain tumor but w/ the help of FH and progressive treatments has been in remission for should call her
its a dance studio in bellevue wa

Ridgewalker said...

Hey Cameron Sueanne and Elise,

It is good to hear that you are doing good and the aura of support has followed you both. Many times along the trail I have been thinking of you two, yet have not been near the internet to find out how it is going. The strength of you both is an inspiring thing. And I wish you well. I have been giving a prayer to you both at the tops of the mountains along the way. And I hope you continue to be strong and well...

-- Jorj