News from Boston - 2- The routine

It has been 3 weeks since the proton radiation therapy has started, and we have adapted to a pretty quiet routine. We are staying in a studio very near the hospital that is being offered to us by an organization called Christopher's Haven. This organization runs 7 apartments for families like us, and it is just a life-saver (imagine staying for 2 months in a hotel room with a one-year-old...). Every morning at 9 AM, Maarten and I (Sacha) stroll out of our apartment and head in the direction of the proton center, while Francois stays at home to work at the computer. The mornings at the center are reserved for the little kids who need anesthesia for the treatment (its not easy lying still to receive your radiation when you are a one-year-old!).
It may all sounds a little scary, but it really is not that bad. Maybe it is because the room is decorated with Nemo, or maybe it is because nurse Rachel has so many toys, maybe it is because the docters are crazy about Maarten, or maybe it is just because our little boy is such a trooper, but fact is that Maarten arrives at the center with a smile and leaves with an even bigger one! It is truly amazing.
While Maarten undergoes his treatment, mommy spends her time in the waiting room doing puzzles. Yes, you read it correctly, puzzles! Of all the books I could read, all the things I could study, or all the languages I could learn..... I choose to do puzzles! the larger and more complex, the better! Ah well, everyone has there little weaknesses, right?
Usually at 11 AM, we are free to go and so we have the entire afternoon to do fun things. We will tell you more about the fun things in the next post!

News from Boston - 1 - Thank you all!

This is the first post made from Boston by Maarten's parents, Sacha and Francois, and we want to use this space to thank all our friends and colleagues for their love and support over the course of Maarten's illness. The help goes far, very far, from stuffing our freezer with home-made food and making sure that our house stayed clean while we were camping in the hospital, to staying with us while Maarten underwent his operations and offering personal holiday time when going to work became impossible. And now our dear friends are organizing a sale for Maarten, and it is just such a nice and generous thing to do for us. We want to thank everybody who is helping us, it really means a lot to us.

Benefit Yard Sale for Maarten

This is a plea for help from a 1 year old cancer patient.

I, Maarten, was diagnosed with brain tumor when I was just three months old. The plan was to surgically remove the tumor and to keep me on chemotherapy in Seattle until I was old enough for the preferred radiation therapy. Unfortunately, a specialized MRI in Boston prior to the much awaited radiation therapy has revealed that the tumor had returned. I returned to Seattle for a second surgery that had to be canceled as it was too risky. I am now back in Boston for radiation therapy. I have known no life other than one in ICUs, chemotherapy, and frequent flights between hospitals in Seattle and Boston.

While much of my medical expenses are covered by my dad’s health insurance, my parents have had to bear all other expenses (such as extra house rent in Boston, and frequent flights Seattle-Boston). They are doing everything they can to care for me and cover these expenses. Our sole source of income is a modest postdoctoral stipend earned by my dad, Francois, a scientist. My mom, Sacha, a spectacular scientist herself, had to quit her job to take care of me. With all our relatives in the Netherlands and France, we are struggling emotionally and financially through this difficult time. My mom’s ex-colleagues and my dad’s co-workers, have come together to make a difference in any which way they can. They are organizing a yard sale and a bake sale:

When Friday, September 18, 2009 9am-6pm and Saturday, Sept. 19, 8am-5pm
Where Peace Lutheran Church in West Seattle, 8316 39th Ave SW, Seattle, WA 98136-2351.

Please support them. We need your help.

Note: All proceeds from this event will go directly to Maarten’s family. If you would like to give a cash donation, you can do so through account #41886441 at Bank of America, either in person or online.

We have established this blog so you can read frequent updates on Maarten’s progress.

I am Fighting Against This

Maarten's tumor is called ependymoma and it exists of cells that are lining the different compartments of the brain. These type of cells can only grow in the brain and sometimes in the spinal cord, but not in the rest of the body. It is the third most common brain tumor in kids and it is treated by surgery and radiation.

After the surgery to remove the tumor, the doctors decided to do chemotherapy until Maarten turned 1 year old in hopes to prevent the tumor from returning. Preferably, kids should be at least 3 years old to undergo radiation therapy to the brain, and if that is not possible, then at least 1 year old. Unfortunately, the chemo was not efficient in Maarten. The tumor has reformed, although, removal is too risky. Currently, they're administering proton radiation in Boston in hopes to stop future cancer and eliminate the new tumor.