What follows is a guest post from NB Mom Shelly Gegen about her son John and DFMO

Almost 3 years ago to the day, our world was turned completely upside down when at the age of five, our youngest son John, was diagnosed with stage IV high risk neuroblastoma. We were devastated to learn that John’s little body was filled with cancer. He had a softball size tumor above his left adrenal gland, neuroblastoma in the bones of his legs, pelvis, shoulders and skull, and his bone marrow biopsy came back 90%…packed with neuroblastoma cells. Devastated…

My husband and I had never heard of neuroblastoma, but we quickly came to hate it and the horrific statistics that come with it. During John’s road map of treatment following the COG protocol, we did our best to avoid the dismal statistics of our child’s 40% or less chance of long term survival. (Can you ever imagine reading that number in regard to your child’s life?!) Instead, we focused on the overwhelming task of helping John get through one day at a time as he faced the harsh and only treatment we knew of to battle stage IV high risk neuroblastoma. His little body endured 6 rounds of chemo, a stem cell harvest, surgery for his tumor resection, stem cell transplant (which included high dose chemo), 20 rounds of radiation, accutane therapy, antibody therapy, bone marrow biopsies, MIBG scans, CAT scans, surgery for a G-tube, blood transfusions, fevers, countless days in the hospital…..

While John’s body was responding well, an intense panic was starting to set in with me about him nearing the end of his treatment. Then what? What about that dismal 40% survival rate? What about those words that took my breath away every time I came across them…”No known cure for relapsed neuroblastoma”. There had to be more. Now I was allowing myself to search on the internet and ask John’s doctors about clinical trials that I was coming across. I read and read about DFMO, talked with other parents that had children on DFMO and was relentless in discussing it with John’s doctors. If there was something out there, with minimal side effects, that could increase our child’s chance of survival, we wanted it! All of those factors led our family to Dr. Giselle Sholler at Helen DeVos Children’s Hospital in Grand Rapids, Michigan.

In August of 2013 John was officially enrolled in the DFMO 003 Clinical trial during our visit to Dr. Sholler. One month later, John’s care was transferred to his home hospital of Children’s Hospital and Clinics of Minneapolis as they had also opened up the study.

To John, who is now 8 1/2, he understands the importance of DFMO, but on a daily basis to him, it is 3 pills he takes in the morning and 3 pills he takes in the evening. It means once a month blood draws and doctor visit. Every 12 weeks he receives scans and a hearing test. The only side effect John has experienced to date has been a little hair thinning and we are hopeful it will thicken up in time.To John, this is his normal and he takes it in stride. Of all his treatments, it has by far been the easiest for him. He remains full of energy, playing hockey three times a week, running the neighborhood with his buddies and enjoying all activities that come along with being a little boy.

To my husband and I DFMO = HOPE. A hope for our child to beat that 40% survival rate. A hope for our child to not relapse. A hope for John to grow up and lead the life he deserves. A life without cancer. A hope for John to live.

We still worry and we will always worry, but with DFMO on John’s side, there is peace on our minds and in our hearts each night as we lay our heads on our pillows. We find comfort in knowing that we are throwing everything we can at this nasty beast, neuroblastoma and we are helping to give John the best chance we can.

Words can not begin to explain how thankful we are for John’s medical team, Dr. Sholler, the NMTRC, and all the private donors and organizations that help to fund research and makes clinical trials like DFMO available to our children. This critical funding provides research, creates treatment options and gives hope where there wasn’t hope before. This team of dedicated medical experts, scientist, parents and people (all kinds of people)are fighting to give kids like John a bright, tomorrow.

Love, Hope and Blessings,

Shelly Gegen
(Proud mom of John)

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