Wednesday, May 28, 2008

off to yellowstone in the morning

So Here it is 11pm and I am still packing for the trip. It is exciting and chaotic at the moment.
So thanks to Fairy Godmother (make a wish for terminal adults) and Suanne off we go on a three week road trip adventure. I'll post pics and blogs on the road.

I did want to mention that thanks to donations from the benefit and elsewhere we were able to put Ten thousand dollars in our son's G.E.T. account to help with college in the future. Thanks to Pagliacci and all the people who have gave in many ways out there for their support. It really has been an amazing and wonderful thing, and a reminder of the kindness, generosity, and love that sometimes seems hard to find in our world.
Thanks again,
-cameron

Saturday, May 24, 2008

Sasquatch

Sasquatch was an incredible experience, Elise and I had a ton of fun. Thanks to Lisa and Scott friends of Matt from Pagliacci, we got backstage passes and got to meet Zach, the singer and musician of Beirut, the main band we were there to see. He also chatted with us, took pictures(below) and signed a limited edition Beirut poster that Lisa hooked us up with. We also got to meet the artist behind the poster who designed it, and she was great. She signed it too.
Elise had so much fun and was still excited about meeting Zach on the way home.
We also got to see a couple other bands we like, but Beirut stole the show, they were amazing live.
Oh, and we both got sunburns.
-cameron





Monday, May 19, 2008

Beirut!!!

Sweeeeet, we just got tickets and parking to Sasquatch festival to see one of our favorite bands, Beirut.
This is afer we previously tried but it said there was no parking left, bhut this time it said there is tickets for parking.
This is one thing Elise Really wanted to do, she has been excited about this for a while. I'm excited that it did actually work out.
So off we go Saturday to see Beirut as well as Modest Mouse, M.I.A., and a bunch of other bands.

Sunday, May 18, 2008

random update

Words can't express how great it is to have Elise home, it's great being a family again.
Tonight we went to see Speed Racer, it was a lot of fun.
It seems like we have a million things we want to do and never enough time to do it in. But things are picking back up after being extremely slowed down by my back injury.
I still have some stiffness and soreness every now and then, but for the most part I'm functional again. Unfortunately just in time for all of us to get a cold, but were getting through it.
With all that's going on it's hard to keep up on little things, a lil each day I guess.
Jasper has become good friends with a kid here at our apartments, they play all day and are just too cute.
Maynard the cat continues to rock here is a pic we call handicat...

All in all things are pretty good.
I do want to say thanks again to all the people that made the benefit possible, and to all the people that have supported us through all this.
-cameron

Thursday, May 15, 2008

Postponed Treatment & Yellowstone Trip

Elise has decided to postpone any additional treatments until after her trip to Yellowstone, mid-June. This vacation is important for Elise as a time to make happy memories with her family, a time to enjoy the outdoors, wildlife, and nature's wonders at our country's first national park. Elise has thought long and hard about this decision to postpone treatment, weighing the pros and cons. She knows that she risks additional tumor growth while traveling. But, she also knows that if she were to have either chemotherapy or stereotactic radiation that she'd be dealing with some likely side effects while on the road – extreme tiredness, nausea, worsening right-side weakness, and more difficulty thinking ... along with having to stop at hospitals along the way to monitor blood counts. She wants to be as strong and as clear-headed as possible for this trip that she has been wanting to take since she was very sick in the hospital. So, when she returns
mid-June, she'll have another MRI and discuss with her doctors about the best courses of action at that time.

The Yellowstone Road Trip will be about 3 weeks long, camping in the van for 4 nights along the way to Yellowstone Lodge which is just west of the national park. Thanks to the generosity of the Fairygodmother Foundation*, Elise was gifted 5 nights at a hotel, with some fuel and food money to boot! Elise will be using that time to explore the west side of Yellowstone and hike the many accessible boardwalks near the geysers and hotsprings. Next Elise will be visiting her twin aunts and families who live in Cody, about 50 miles east of the park ... staying in rooms provided by her aunt at the Super 8 Motel they manage (thanks Connie!). In Cody, Elise will visit with family, explore some cool Wild West museums, go to a rodeo, and maybe do some fishing. Then, the next 4 days will be spent back in the National Park, camping next to Yellowstone Lake on the east side of the park. There Elise plans to continue enjoying the sights, wildlife, and some family time
around the campfire. Finally, as she camps her way back home, Elise hopes to stop in Bozeman to visit face-to-face with some of her long-time online friends.

We are busy getting ready for this trip in order to leave on May 28th. The van has been thoroughly checked out mechanically. A hitch has been installed to pull a small trailer. Reservations have been made, making sure that all places accommodate Elise's wheelchair. The route has been plotted out on a GPS on a laptop, which will also be used to play DVD movies for long hours on the road. And Jasper will bring his DS to play video games. In addition, Cameron hopes to connect to the Internet along the way to provide blog updates and pictures.

*The Fairygodmother Foundation is like the Make-A-Wish Foundation, only it's for adults. Elise was referred to this organization by her doctor when he heard of Elise's desire to visit Yellowstone with her family. Go to www.fairygodmother.org to learn more about this wonderful organization.

I know this is a very long post, but I couldn't really talk about Elise's decision to postpone treatment without also sharing about her plans for Yellowstone.

Suanne (Elise's Mom)

Follow Up MRI

Elise and I had a long afternoon at the UW Medical Center today (Wednesday). She had her follow-up MRI and had confirmed that the tumor did shrink ... wahoo! The MRI also showed signs of edema surrounding the defined tumor area which could be leftover inflammation from radiation treatments or spreading tumor cells ... the doctors can't tell which. Last Friday Elise started taking the steroid decadron again because she was getting too tired and having a hard time thinking. She will begin tapering off again in another week. Elise also met with her radiation oncologists today to discuss treatment options. Currently, she is considering when to start those other treatments (chemo and/or stereo tactic radiation). Suanne (Elise's Mom)

Tuesday, May 13, 2008

The Benefit

The Benefit was just amazing, Elise and I were completely overwhelmed by all the effort put into it, by all the support, by all the generosity, an by all the love.
Elise had so much fun, I think we all did, it was incredible.
I have a link to the right to photos from the benefit.
I really can't thank everyone enough.
Thank You all very much!!!
More later,
-cameron

Monday, May 12, 2008

Sunday, May 11, 2008

Mother's day

Happy Mother's day to all Mothers out there. To my Mom Judi, I love you. To Suanne, one of the most amazing Moms around. To Laurel and Cindy, the pics we got were great, I can't believe how big the kids are. To my sister Carma who may not be a mom, but was the next best thing to Jasper when Elise was in the hospital, she is an honorary Mom, I love you sis. Of course a special Happy Mother's day to my Elise, my favorite Mom.

Today we are trekking out to Yelm, WA for Mother's day and spending time with family.
And of course tomorrow is the benefit and we couldn't be more excited. I forgot to put on the web poster that there will also be a raffle and head shaving.
I have a lot of prep to do for our trip to Yelm, so I gotta run, post more when I can.
-cameron

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)

a couple more tattoo pics





Thursday, May 08, 2008

Wednesday, May 07, 2008

Thursday, May 01, 2008

excited

Right now Elise is off with her mom on an awesome adventure. Suanne is getting her first tattoo, a symbol of her love for Elise. Pics as soon as I get them.
In the meantime here is some pics from over the years.