The choroid plexus tumor initiative started for me in 1998. Most tumors in children were well described and treatment protocols tested and optimized already then. I was working as pediatric oncologist in the Alberta Children’s Hospital, mostly using these protocols to take care of children with brain tumors there. However, when Maggie came to us, and her tumor turned out to be a choroid plexus carcinoma, there was no protocol. So I reviewed the medical literature, talked to all my colleagues, and designed her treatment accordingly. I turned the literature review into two publications and the discussion with my colleagues, into the first clinical choroid plexus tumor study protocol. The protocol was approved by the International Society of Pediatric Oncology SIOP, and started enrollment in 2000. When I left Canada to go back to my native Germany, Maggie had gone through multiple brain surgeries, chemotherapy and radiation, and she was well. It was Maggie, who gave the most impressive good-bye speech at my fair well party in Calgary.

In Germany, the Kinderkrebs Stiftung decided to fund some of the expenses of the study. This is a philanthropic organization, that has its historical roots in an effort of local cancer parent organizations coming together to create an organization to do research for childhood cancer. In the beginning, they could only afford a quater salary as funding. Ove Peters, my partner in Regensburg, and I raised further local funds and added it all up to a half a salary. We then executed one of our smartest steps: We found and hired Brigitte Wrede. Dr. Wrede has ever since diligently developed a name in the field. She wrote her thesis about choroid plexus tumors, and turned into an expert in the field. Physicians who are faced with the problem of taking care for a patient with this rare tumor, find in her a highly knowledgeable, professional and fast working supporter. Over the years this became known in the international community and the registration numbers of the study have increased steadily. Other countries joined in. An example might be the remarkable impulses from Turkey with Tezer Kutluk, Su Berrak and Reji Kebudi. They register patients, write protocols, move the literature database forward, and audit the interims data. Other medical disciplines also joined us. In Neuropathology, the well established reputable colleagues Werner Paulus and Torsten Pietsch, became interested and worked with leading us to the Martin Hasselblatt. When he joined us, he was about to establish his reputation in neuropathology, and he did indeed. He listens to our questions, heads to his laboratory, finds the answer, and publishes it.Ever Since he joined us, numerous detailed questions about the molecular nature of choroid plexus tumors have been answered. Now he has reached the level in which we can turn this knowledge into clinical reality of novel treatments. Even the World health organization listens: the classification for brain tumors was changed based on our work, a new entity was defined based on our work: atypical choroid plexus papilloma WHO grade II.

In 2005 I accepted an offer from MDAnderson Cancer Center to head the pediatric neurooncology section. This hospital ranks number one as Cancer Center; people travel very long distances, move all their lives to receive treatment here. This adds additional burdens on families and I had to develop techniques accordingly, supporting structures and treatment protocols to take this reality into account. Gracy and Zachary,patients with choroid plexus tumors came all the way from Kansas. To receive treatment in MDAnderson the young families were split by almost 1000 kilometers distance. However, these are not the only challenges we must face, here at MDAnderson Cancer Center. The proton beam facility with Anita Mahajan, diagnostic imaging with Leena Ketonen, and neurosurgery with Jeffrey Weinberg and Stephen Fletcher, have added new impulses to the group. Treatment concept improves year by year getting more and more specific and detailed. Also the time has come in which the clinical data must be analyzed, and the next protocol needs to be put together. That turned out to be quite difficult. Small patient numbers and a larger heterogeneity of the tumors, make standard biomathematical instruments useless. This was the moment for Peter Thall. As a mathematician and professor at MDAnderson Cancer Center, he takes on seemingly impossible tasks and provides solutions that are clearly genius. Together with us, he is developing the new mathematical background for our next treatment protocol.

Up to now the work has been exciting, challenging, and rewarding. The most important reward for me came in 2008, when Maggie, my first choroid plexus tumor patient, invited me to her wedding.

The job is not done yet: There are still some patients that die from the disease and others who survive but with long term sequealea - scars in their life. The job is not done before we know how to prevent this, every where in the world! But there have been many opportunities to finish the job. The laboratory part testing drugs and drug combinations in cultured choroid plexus cells is well on its way. Animal experiments might not be necessary any more since we are developing a far better way to get animal data. Dogs suffer from choroid plexus tumors much more often than humans. Spearheaded by Stephen Fletcher and Jon Levine, we are building an academic program to treat dogs with brain tumors. That will generate data almost of the validity of clinical trials in human patients. This website will generate a new type of data: Patients or parents self-reporting. This has the potential to overcome the largest hurdle of our clinical research: too small numbers. And finally, the new clinical protocol will bring us the answer as to how to treat these patients optimally and faster than any other concept. I intend to finish the job before Gracy or Zachary invites me to their weddings.