When my son, Charlie, was 4, he had a stomachache over Memorial Day weekend. After a couple of days of home remedies and phone calls to the pediatrician, I made the decision to go to the ER near our home. The diagnosis was nothing I could have ever prepared for. Stage 4 high-risk neuroblastoma. This diagnosis was our family’s worst nightmare.
The first weeks in the hospital were not so fun. Charlie wasn’t happy with the poking and prodding. Caroline wasn’t happy that she felt abandoned by her parents, and Mike and I just generally felt grief stricken. I remember waking up each morning in the hospital room and thinking, “Ugh, this is not a dream. This is really happening. What is the future of the life of my precious family? Why am I in this place?” And yet we also felt so blessed and thankful. Blessed to live in Houston with its Medical Center, as we learned quickly how many families had to divide and conquer and travel to get the care for their loved ones. Blessed to have such supportive family. My mom was there and stayed for weeks that first time. My brother was calling always checking in. Mike’s family was there too. So many other patients didn’t have the family to lean on or the financial stability to see such a long-term illness through.
My husband began our Caring Bridge journal, which has also become a bit of a ministry of the heart. It allows us to get things that we are feeling about this cancer road and also communicate medical milestones.
We also had a group of friends that showed up at Charlie’s bedside the very first night. We cried together in fear of the road ahead and prayed for strength to help my family through this. Many friends vowed to never leave us and help in any way possible to support our needs. After these “first night” friends left I thought about how many people truly were Angels in our lives, now “Charlie’s Angels.” Rubber wristbands were made in Charlie’s favorite color at the time, bright yellow. They display a favorite and appropriate Bible verse, Phil. 4:13. “I can do all things through Christ who gives me strength.” T-shirts were sold, prayer meetings held, dinner calendars organized. Presents, cards, flowers flowed in for months like every day was Christmas. I saw the most beautiful side of people; their caring hearts and Christian spirits made it almost impossible not to get through even the toughest of days with at least a little bit of a smile.
And boy there have been some tough days! Charlie has endured 5 rounds of chemotherapy, two surgeries (one 19 hours in length and resulted in the removal of one of his kidneys), radiation and a stem cell transplant that nearly took his life due to heart failure. Caroline has dealt with having her family fractured and not always feeling the same kind of normal that she used to. This cancer has taken its toll on our family and friends, but Mike and I made a conscious decision that we didn’t want to look back on our lives as something we had wasted or worried or lamented through.
One special time during our ordeal was when our Aggie quarterback Johnny Manziel was given a prayer bracelet to wear for Charlie. This was before he was a known candidate for the Heisman trophy and frankly before a lot of people even knew his name. He knew Charlie thought he was the “best Aggie player” in Charlie’s words and that is all it took for that then 19 year old young man to make a commitment to our son and wear his band every day, including on the football field. Johnny found out more about Charlie’s cancer and was so moved by his story that he spoke of Charlie on the Heisman trophy stage months later. This was a complete shock and blessing to us as it raised awareness not only for pediatric cancer but of the need that only God knew at the time Charlie was going to have for BIG prayers. In the coming days Charlie went into heart failure. The cardiology team came in to ICU and began to prepare Mike and I for the worst. They said without a doubt if Charlie ever recovered he would be on all kinds of heart medication and be very limited in his activity the rest of his life. Mike and I grieved the loss of the life we had envisioned for Charlie all over again. But something stirred in Mike very quickly and he looked at me and said, “God has elevated this story for His glory. Charlie will be healed. I just know it.” We believe fully it was only by God’s grace and SO many prayers from around the world that he has made a full recovery just days after in the heart department.
Johnny’s mom called me shortly after we arrived home from Charlie’s transplant and introduced herself and told me what a blessing we had been to their family. We were a blessing to them? I pondered how God sometimes lets lives intersect for His purpose and how amazing the thought of us having ANY influence on the year’s Heisman winner was to even comprehend. She went on to say that Johnny’s sister was helping put on a golf tournament through her school and that they had selected Charlie’s “foundation” as the partnering charity if that was ok with us. Foundation? We didn’t even have a foundation in place. Mike and I had been kicking around the idea of starting a foundation to raise awareness and funds. However, with trying to manage hospital visits, kids, jobs, and everything else life threw our way, we didn’t know when we would have the time to do it. This call from Johnny’s mom certainly gave us the kickstart to get it moving. That was followed by a call from our CPA offering to do the 501c3 organization paperwork at no cost to us. What a blessing! We knew God was giving us a wink when we went into the bank to set up the account for the foundation and the lady (only four in the building that day) that helped us said, “I am so glad you are doing this. My daughter had a rare type of pediatric cancer. It’s called neuroblastoma. You have probably never heard of it.” We shared with her that this was also Charlie’s cancer and that we hoped to make a difference in the lives of many children someday. We then of course asked, “How is your child now” as NB many years ago had a very grim prognosis. She said, “Well, my daughter was given a one in a million chance of survival, but she beat the odds and is today a research nurse at MD Anderson Cancer Hospital.”
I am so thankful that I have learned to find joy in all things. It doesn’t mean everything always runs smoothly, it just means that I know all things work together for good.
