Songs of Hope

What an amazing concert we had on our beautiful Vashon Island! We cried, we laughed, we felt shivers and gratitude. An unforgettable afternoon that raised over 10.000$ for Pediatric Brain Tumor Research.

Thanks to all the people involved for making it happen.

Benefit concert for Pediatric Brain Tumor Research

Hi all,

We are getting geared up for the Opera and Chamber Music benefit concert that our friends on Vashon are organizing to raise money for Pediatric Brain Tumor Research in honor of Maarten.

It is an outdoor's event at a private property on Vashon and all big names in classical music on Vashon will be there. It is going to be fantastic! 

If you are interested, please find tickets online here: songsofhope.bpt.me/

Final week of treatments also finished

Maarten went through the second and final week of treatments with a gold star! Francois got hit by cold symptoms in the beginning of the week (cough, runny nose and the like). It was not covid-related according to the tests, but he decided to stay home anyway to make sure Maarten wouldn't catch anything while undergoing treatments. 

The doctor was pleased with how it all went, so now we are released back home with the instructions to call if anything comes up.

I think it's time to enjoy these last two weeks of vacation to the max!

Sacha

Here are some pics of our days in Seattle (spoiler alert: lots of food!). 

First week of treatments completed!

 Dear all,

Maarten charged through the first set of treatments like a shining star! The people of the UW/Harbor View Gamma Knife Center are extremely capable and kind, and we are very thankful. The week was topped off by a wonderful haircut at a very hip Capital Hill hair salon.

To be continued next week...

Treatment plan scheduled

We have the following treatment plan scheduled: Tomorrow (July 29) Maarten will repeat the MRI to get the most up-to-date images. Upcoming Tuesday (August 3rd) the radiation therapy will start: five sessions of Gamma Knife Irradiation, every other day minus the weekend.

Start of radiation therapy pushed out a little

Hi you all,

Just a quick update. We are running a bit behind with the treatment scheduling and won't be starting the radiation therapy this upcoming week. We believe the earliest possible start date may now be August 2nd, or possibly later even.

Will keep you posted.

Sacha 

13th birthday party!

 A big hurray for a fantastic birthday party in the sun!

A Quick Stop to NYC!!

 Hi all

Coming to you with exciting news that I went (along with some friends and my fam, of course) to New York City!!!!!!!!!! 

We spent 2.5 days running wildly through the bustling streets (and after our very determined to see everything- friend) where in DAY 1: Danced to Dua Lipa in a cafe, we went to the MET (Metropolitan Museum of Art), we rushed to get to the Harry Potter store on time, went shopping there, drank Butterbeer and ate at an awesome Korean restaurant called 5 Senses (look it up, it's crazy good). On to DAY 2: swam at the our hotel's (Gansevoort Meatpacking) ROOFTOP pool with sweeping views of the skyline while my dad and a friend went to get breakfast. We met up near the Highline and ate breakfast there, we walked on to see the Vessel (seen in pictures below), had taxi issues, went to the Brooklyn botanic gardens, stopped by Prospect Park, and an amazing dinner with DELICIOUS Buttermilk Panna Cotta, found out the Brooklyn bridge was closed, went to the Brooklyn bridge park instead, viewed the fireworks and went home. DAY 3: went to MOMA and flew back home.

Maarten

We've got a treatment plan!

The medical team unanimously decided that gamma-knive radiation therapy is the best course of action to treat this new tumor. Basically, it's a very targeted approach specifically designed for the brain as a 'non-invasive' alternative for brain surgery.

We are currently planning to start the therapy by the last week of July, so that gives us a couple of weeks to enjoy the summer and have some serious fun!

We'll keep you posted,

Maarten, Francois and Sacha

News from the tumor board

 Dear all,

After a couple of years of relative tranquility, Maarten's latest MRI showed growth of a troublesome spot located on the brain stem. The medical team at Seattle Children's is working on a treatment plan to deal with this latest bout of recurrence. We now know that Maarten has a type of brain tumor (recurrent Ependymoma) that will come back time and again, and that will just have to be 'spot-cleaned' by the neurosurgeons and radiologists until we find a more permanent cure. Therefore, we are kick-starting again our fundraising efforts for Seattle Children's Pediatric Brain Tumor Research guild to support the amazing scientist working on CAR-T cell therapy and other innovative medicine to treat brain cancers. This year we are going BIG with a fundraising goal of $20.000. We invite everyone to join and/or sponsor Team Maarten at the Run of Hope 2021 here : https://www.runofhopeseattle.org/. The Run of Hope will be held both virtually as well as in person (pandemic-permitted) in Seward park (Seattle) - on September 26th, 2021. We want to ask if you can tap into your social networks to broaden our reach. We will have a bake-sale in the next couple of weeks here on Vashon Island and if you have other fundraising ideas please come forward. We trust our medical team and feel so lucky to have you all our lives for emotional support.

We will post some updates on this blog every now and again, like we have done in previous years.

With Love,

Maarten, Francois and Sacha