Posted by Steve Lettau on Mar 14, 2019

Back Story:

Last year Lynn Streeter introduced us to an exceptional young man by the name of Matthew Ceelen. Matt's story began with a letter to our club requesting financial support for his Eagle Scout project of building two bat houses to be placed in the Mequon Nature Preserve. With the request approved, we heard what Paul Harvey used to call "The rest of the story".

Matthew was diagnosed with bone cancer just weeks shy of his 15th birthday. In medical terms it is a high grade sclerosing subtype of osteosarcoma. Approximately 450 children in North America are diagnosed with osteosarcoma each year. He is 1 of approximately 4 children who will be diagnosed with his subtype of osteosarcoma in 2017. 


Posted by Deb Lehman (3/11/2019)

Matthew’s appointment with oncology was delayed to Feb 22, but the wait was worth it. The CT scan was normal and he is officially nine months cancer free! In the weeks since that appointment, his labs have improved. HIs liver tests went back to normal on Feb 18 after discontinuing Rifampin. His white cell count and neutrophils, which fight infection, have normalized after being really low. The numbers were similar to his counts when he was on chemotherapy. The low counts can be a side effect of Vancomycin, but given Matthew’s history it could have also been a side effect of the high dose Methotrexate chemotherapy. Methotrexate can cause bone marrow issues long term. If the numbers would not have improved, Matthew would have had to have a bone marrow biopsy which he was upset to hear. Luckily, that is not necessary at this time. The “late effects” of his cancer treatments may not show up for years and add a layer to his healthcare that must be taken into consideration throughout his lifetime.

As Matthew was graduating from his use of the wheelchair his dad, John, suffered a tibial plateau fracture, at the end of January. After trying to walk for 2.5 weeks John had an MRI and realized things were worse than expected and crutches are in his future for months. The fracture occurred in Miami following a half marathon and weekend at the Make It Better (MIB) conference. The conference is devoted totally to osteosarcoma. It brings together researchers, medical oncology, surgeons, patients, and families. They work together to provide money for research for better treatments and outcomes for those with osteosarcoma, as well as assist families and patients with osteosarcoma.

Matthew saw his classmates in person for the first time in months on Feb 17 when he attended a Father Son Dinner sponsored by the Fathers Club at Marquette High. The evening was great with thought provoking and motivating speakers. On Feb 19, Matthew felt strong enough to see his friend, Luc, and the MUHS hockey team win a playoff game in double overtime. A week later he returned to the classroom. The school weeks have been shortened due to scheduled days off and this week will be his first full week. It has been tiring, but the hope is his stamina will improve as his blood counts improve. He has a lot of catching up to do, but he has been using his lunch and after school time for meetings and to make up quizzes/tests. He hopes to be caught up in a couple weeks.

Matthew and Natalie (named to the Fall Dean’s List at UW-Madison) enjoyed the Travis Scott concert at Fiserv Forum Feb 22 and returned the next day with their parents to watch the Bucks take on the Minnesota Timberwolves. It was Matthew’s first Bucks game since his surgeries. A member of the Bucks organization, Kareeda Chones-Aguam, was aware of this and arranged for Matthew to meet with Giannis after the game. Kareeda was a special guest at Matthew’s Bell Ringing ceremony last August. The Ceelen’s would like to thank Kareeda and the entire Bucks organization for all of their support since Fall 2017. Unbeknownst to me, as Matthew was meeting with Giannis, my brother Dave and I were watching a recording of the documentary “Finding Giannis”. Find it online if you haven’t seen it. Giannis is truly in a league of his own and not just where basketball is concerned. The Ceelen’s will be cheering for Giannis and the Bucks as they head into the playoffs. #FearTheDeer