My crowdfunded wheelchair accessible car got my life in a new flow. Now, I am 35 and dying, looking for a reset button. Do you search with me?

Five weeks after we started the campaign, in march 2016 we gathered enough money to buy a Volkswagen Caddy Maxi, which got delivered three months later. I know from firsthand experience over a long period of years how much frustration and energy it took from me to use taxi’s with kilometer restrictions and hardly accessible public transport in The Netherlands. Thanks to 831 donations from family, friends, colleagues and complete strangers I could travel the world and show it to my son, while at the same time expanding my consultancy practice. I love the freedom!

Who would have thougt that many of the rides we make would go to the hospital? (Antoni van Leeuwenhoek, Amsterdam) I certainly didn’t. On september 16 2016 an elephant in the room introduced itself. Stomach cancer, originated from the very rare Li-Fraumeni Syndrome which can cause cancers to grow at a very young age (<45). A slew of family members, including my own mother got affected by it.

At first the tumor — which had a diameter of 14cm already had grown into my esophagus — looked operable. (That would still be very risky and complex since the surgeons would also have to deal with the complexity of my cerebral palsy with severe scoliosis.) Soon the road to surgery was cut-off when they found that the tumor had metastasized into my liver.

From that moment on the focus shifted to extending my lifetime with suppressing chemotherapies. Folfox6 Trastuzimab, Capacetabine (Xeloda) and as of today Paclitaxel. Due to a bleeding I also recently got four sessions of rediation therapy. Perhaps immunotherapy might come next, but in my case success rates are known to be very low. (3–5%)

While things looked under control for a very long time — I should have been dead already ;-) — I can tell from physical experience and test results that currently, it doesn’t look good. From what I have heard, thinking ahead six months from now feels like a long shot. Oh yes, I have beaten the odds more than once in my life. But still…

So. I am requesting your help. Not because I don’t trust my very knowledgeable, networked and well humoured oncologist, but because I feel I just need to give it one last push. So, what medically promising treatments might we have missed that we should know of? For assesment purposes I can confidentially share records and imaging with you. My wonderful doctor has given her consent to help me in this effort. Please e-mail me at: niels.schuddeboom@shakingtree.net

Doing this, I hope to be able to bring my one year old son to primary school one day and to have a longer happy and ambitious life with my wife, family, friends and co-workers. Let’s hope life doesn’t end before it begins at 40. ;-)

Thank you for your support!