Monday, June 26, 2023

Steps for Brady 2023

It's been years since I have updated here.
It's been so long that blogs aren't really too big of a thing anymore. Brady is 16  and his cancer diagnosis was over 14 years ago.

Back when I first hit publish on my very first blog post, I decided to call this blog Steps for Brady. At the time Brady had been diagnosed with cerebral palsy. He had progressively lost motor function and a developmental pediatrician told us that he would never walk unassisted. Our dream was that he would, so Steps for Brady became our mission and this site's title.

Fast forward a few weeks when we learned that the first diagnosis was ever-so-wrong. Brady was diagnosed with Stage III Neuroblstoma and the tumor was throughout his right chest wall, extending into and almost fully encapsulating his spinal cord. No one knew the extent of the spinal cord damage, or what kind of a motor recovery he would have if he survived. While our enemy changed from cerebral palsy to cancer, our mission stayed the same...Steps for Brady.

Brady would endure cancer treatment and two highly invasive surgeries in just 4 months. In the end he would be declared as haivng "stable disease" and we would begin the long journey or survivorship. Just weeks after his second surgery, Steps for Brady became a reality. Brady took his first steps. Miraculous in every way.

Years have passed. Brady surpassed all expectations in his recovery. His baby Steps turned into the running strides of a t-ball player. He became an All-Star baseball player in his elementary years and basketball became his favorite sport. No one could have ever guessed that the quiet, but strong competitor had ever been told twice that he may never walk. All the while we monitored a tumor fragment in his spine through MRIs.

As Brady grew into a teenager, a new battle emerged. His spine began to show evidence that it was curving as he grew. We had known that this was a very strong possibility since January 21, 2009. On the day he was diagnosed he endured an emergency spinal laminectomy at 6 levels of his spine. The lamina at those levels was removed in order to allow the surgeon access to the spinal cord to debulk the tumor. What was needed to save his life created a spinal cord that would be like a tree without bark, allowing it to bend as Brady hit puberty and grew.

And bend it did. We followed the curve for several years. We visited doctors who told us a fusion would be inevitable. We researched less invasive options, after all our mission has always been Steps for Brady and spinal fusion carries significant risk. Our research took us to
Boston where we committed several years to  specialized bracing and an exercise protocol for Brady. He wore a customized hard brace for 20+ hours a day. He endured the process of getting fit for a brace 3 times over those years, all the while continuing to play baseball and basketball and living a full life. The brace worked really well...until all of a sudden it didn't. 

Last May a scan revealed that the curve was progressing quickly and severely. The only option left was surgery. We spent the summer researching and having virtual appointments with the best surgeons who offer surgical alternatives to traditional fusion. All of them said Brady was not a candidate. His curve is too high, too severe and his case too complex. We had an appointment with one of the best local surgeons in our area. This was  devastating experience and his opinion was that Brady needed something much more radical than a traditional fusion. His told us that there was a 30% chance that Brady would be paralyzed after this surgery to correct "the deformity." He said this as he gestured toward my son.

But...Steps for Brady. I had not for one minute forgotten about our journey. I had not for one second forgotten that God had seen us through the dark days of cancer and had given us 13+ years of blessing. We have been able to sit on the sidelines and cheer on those steps, those slides, those pitches, those hits. Those have all been good and perfect gifts given to us and meant to glorify God who had seen fit to use Brady's story to inspire hope.

We remembered that years ago we had seen a surgeon in the years immediately after cancer. He was wonderful but had long since moved out of the area. We reached out to him for a virtual appointment. He had left Strong for Shriners, and then went to UNC at Chapel Hill. We had a phone appointment with him and then this spring made a quick 24 trip down to see him. He first and foremost acknowledged Brady and asked HIM if his curve bothered him. Brady said no and reported that he does not experience any pain. He explained that because the curve does not cosmetically bother Brady, the goal of the surgery will be to get some correction, but mostly to stop the progression of the curve. Without this surgery, the spine will keep curving and cause damage to motor function, organs, etc. 

The date was set for June 27th. We are currently on the road to North Carolina. Surgery begins tomorrow at 7:30. Brady will have a spinal fusion T1-T11. The risks are many, but we are in good hands. We have shared those specific risks with a circle of friends and family who are praying over them. As parents we are feeling such agony knowing that Brady will endure suffering as this is not an easy surgery. At times we question our past choices, wonder if we did the right things at the right time. We trust God for a favorable outcome for Brady, but also know that sometimes prayers are not answered on our terms.

We humbly ask that you join us in prayer. We are asking that God will keep making a way for Steps for Brady. It has been so good to write down and share these reflections of Brady's life as we prepare for the next battle. God has been so good to us. We pray Brady's story will continue to glorify Him.

With hope,

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