Cookies for Kids’ Cancer Blog

New Clinical Trial Gives Hope to Children Battling Cancer: Aidan’s Story

Filed under: childhood cancer research,kids fighting cancer — Tags: , — The Good Cookies @ 11:04 am September 12, 2017

Michele Brown courageously shares her son’s story and his fight with neuroblastoma.

March 17, 2010 was the last day of before. Before Cancer. Before our new normal.

We had piggybacked our boys from their beds to breakfast. This was our fun way of getting them up early and off to school. Like usual, we flopped Aidan onto the couch, but this day he cried out in pain and told us that his “weak leg” hurt.

After two months of numerous visits to the pediatrician, orthopedist, rheumatologist, infectious disease doctor and emergency room, we heard the words that marked time. There was then and now, before and after. Our beautiful boy was diagnosed with Stage IV Neuroblastoma just days before his fifth birthday. The large tumor wrapped around his left kidney had already metastasized to the bones in his weak leg and three other spots before we knew anything was wrong.  When Aidan relapsed in June of 2014 we had finally exhaled. Aidan had just finished a great year in the 2nd grade. He was playing soccer and basketball. The light in his eyes, his energy, and his auburn hair were back. The first time around we knew something was wrong.  He had fevers and pain. This time we were blindsided. We believed we had beaten the odds, but instead we ended up in an even worse statistical cesspool.

The first time, Aidan endured three surgeries, seven rounds of chemotherapy, a stem-cell transplant, five rounds of immunotherapy, 12 proton radiation treatments and about 150 days in the hospital. It was hell. No words describe the pain, damage done, innocence lost, the changes in the family and sibling dynamics, the weight of every decision, the suffering, or the fear. Yet, there was a plan for treatment and cautious optimism from the medical community. So we persevered. We learned how to let others support us. We questioned but clung to our faith. We cried every day but remained determined to learn life’s lessons: make each day count, find joy and something to be grateful for, take it one day at a time. We struggled to hold onto a job, deal with the insurance companies, understand medical jargon and drug side effects, take care of big-brother Alex, help Aidan through horrific treatments, and keep ourselves from falling into a pit of despair.

The second time there was no protocol to follow. Our local children’s hospital and our compassionate doctor had nothing to offer but more radiation and a clinical trial that involved chemo treatments. They were scheduled one week on, followed by two weeks off, until they “stopped working.” There was little hope to be found anywhere. Our schedule became the continuous loop of: our family being torn apart, Aidan being sick in the hospital from treatment, coming home and helping Aidan recover, having one good week, and then back to the hospital. We were devastated. Then, we read an article about a vaccine getting orphan drug status. The Trivalent B Vaccine was being offered at Memorial Sloan Kettering Cancer Center and this promising new drug was funded by Cookies for Kids’ Cancer.

We flew back and forth to NYC to get Aidan the series of seven vaccines. It was a hassle to get to NY but we returned home thankful to have our family together and able to sleep in our own beds, under one roof, on most nights. Aidan had a sore leg and welt at the injection site but he wasn’t nauseous and not eating. After each treatment, his immune system grew stronger, instead of weaker. Best of all, we had hope. Children with cancer, their parents, their big-brothers and everyone around them need hope. New cancer drugs mean hope — hope for a longer life, a better quality of life or maybe even a cure.

We know first-hand the difference new research and new drugs can make. We live with a miracle. Aidan recently celebrated his 12th birthday. His scans remain clear. Once again, he is happy and healthy, playing basketball and soccer. He earned straight A’s in school and he plays the violin. He is amazing. We can’t let our minds think about what our lives would look like if Cookies for Kids’ Cancer hadn’t funded that vaccine. We pray we never need the future drugs they will fund.

We try our best to fight back our fears, live in the moment, and recognize that we have been given a gift and that the future is uncertain for everyone. We will spend our lives grateful to Gretchen Holt-Witt and the staff who work tirelessly to help bring new treatment options to the most innocent victims. Thank you to everyone who supports Cookies for Kids’ Cancer and their research.

If you have ever wondered how you can help or what you can do, please give to Cookies for Kids’ Cancer. You can give more families, like ours, much-needed hope.

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