This is a guest post by John Johnston, dad to patient Mike Johnston, who was diagnosed with a tumor in 2011. His family will be in Washington, D.C., next week for Family Advocacy Day. In its eighth year, the Children’s Hospital Association 2012 Family Advocacy Day brings patients from children’s hospitals and their families to tell their stories to lawmakers on Captiol Hill.
On April 18, 2011, we took our 13-year-old son Mike to Children’s in St Paul. That day, our family began receiving treatment from Children’s. It turned out that Mike had a cancerous Germinoma tumor that was blocking the flow of cerebral spinal fluid. The fluid was building up in his skull, putting pressure on his brain and causing him to have tremors and headaches. As we began Mike’s cancer journey, it became obvious to our family that Children’s not only treated the patient, but they treated the entire family. Every staff member who came into our room introduced themselves to all of us, including 7-year-old Emma. We felt secure with the staff since they all made time for us and made us feel like we were their only patients at the moment.
Throughout Mike’s treatment, several important events were planned. The first was the American Cancer Society’s Relay for Life in White Bear Lake, Minn. Mike was one of the featured speakers. The oncology team scheduled chemotherapy and other appointments to make this special event possible for Mike and our family. The second major event for Mike that summer was his junior high school trip to Washington, D.C. This was an opportunity he couldn’t pass up since the teacher in charge was Mike’s favorite teacher and helped Mike get passionate about history. Mike enjoyed the monuments and museums in our nation’s capital and was able to take it all in despite his low blood counts.
Throughout our family’s journey with Children’s, we all felt blessed to have this institution charged with our son’s care. We felt so proud to have Children’s in our life that our family made a commitment to give back. Mike is now a member of the Youth Advisory Council, and my wife and I participate in the Families as Partners program. This all led to the upcoming opportunity for our family to travel to Washington, D.C., to advocate on behalf of Children’s. We’re very excited for this chance to give back. We even accepted this opportunity knowing that we would travel on Emma’s ninth birthday. We can hardly wait to see the sites as a family and meet many wonderful people who’ve also been touched by Children’s.
See you in Washington!