Clinical Trials

We were sitting around the hospital room earlier today, Mallory was being a champ. She slept most of the day, even though we were not able to feed her after 4 AM. She had her moments in the morning, but then she just slept all afternoon.

In the early afternoon, a gentleman walked in the room and introduced himself. He is Spectrum Health Research Technician. His came up to us to talk about entering Mallory into a clinical research program.

Helen DeVos Children's Hospital is part of Spectrum Health. Spectrum Health is part of the Clinical Oncology Group, which is a consortium of hospitals around the United States. St Jude's is a COG hospital, and so is Helen DeVos.

Clinical research starts just with a team of doctors with a common goal. They focus on exactly one thing, studying a specific disease. They then present their idea to an independent review board, and the board needs to approve the study before it can be opened up for participation.

The gentleman works for Spectrum Health, but he was representing the COG. He was asking for permission to enroll Mallory into a specific COG Neuroblastoma clinical research program. Essentially the doctors are going to remove the tumor, and then chop off a portion and allow the COG to study it for research purposes. A small sample of her blood, and bone marrow will also be going with the tumor sample.

We know that research doesn't happen overnight, and we know that sending out samples won't influence the kind of care that Mallory is going to receive, but we hope it will help the next person. We hope it will help mold and shape the kind of treatments that kids like Mallory receive in the future.

It wasn't long after he left, a very nice lady entered the room and introduced herself as a research doctor working for the Van Andel Institute. Her entire career has been spent studying neuroblastoma. She is literally one of the leading experts in the world on the specific disease that Mallory has, and she came up to our room to see our daughter. She is running her own clinical research at VAI on neuroblastoma.

We approved both studies. We felt it would be selfish and irresponsible not to.