When I was asked by the Family Relations Committee to tell our story, I did not really know what I could say. For me, though, no story about our family’s cancer journey would be complete without mentioning our THON organization. So, this “story” is more about them than us.
Our journey as a Four Diamonds family began much like the journey of every other Four Diamonds family—standing in a hospital room with a doctor saying words you could not have imagined in your worst nightmare, “Your child has cancer.” And to be honest, for the first 12 months after those words shattered our world, we did not give much thought to Penn State or THON. Alex was too ill, too fragile and we were too busy spending three, four, and even five days a week at the hospital in a fight for her life. Our world was very narrowly focused—do not worry about tomorrow, just make it through today.
All of that changed one year to the day from her diagnosis. The mother of Alex’s best friend came by our house to tell us that it was just too much for her daughter. Her daughter wanted to be a normal 14-year-old . . . to go to sleepovers, the movies, the mall. She could not take the sickness, the worry, the cancer anymore. The mother apologized profusely. But stood firm. They were out.
The rug had just been pulled out from under us. Alex was too sick to attend school. As the first year of her treatment slipped by, the kids from school went on with their lives. But for Alex, time was frozen. She spent all day with only her parents for company. Her only contact with kids her own age had been through that young lady coming over to visit her. We had no one else to turn to; she was now all alone without any “friends” to stand with her. Later as I held a sobbing Alex in my arms, she wailed that cancer had taken everything from her. Her health, her freedom, and now, her best friend. For 12 months she had done everything we asked, had fought so very hard, had withstood every challenge that arose. All without complaint. But in that moment, she was done. She had nothing left to give. Alex had hit her wall.
For the next 2 days she laid on the couch in our living room. She would not eat. She would not speak. And most importantly, she would not take her medicines. Sure, her dad and I could have forced them on her. But if the past 12 months had taught us one thing, it was that we NEEDED Alex to fight. Her emotional and mental well-being were just as important to winning this war as her physical well-being. If we could not find a solution quickly, we would have no choice but to check her into the hospital and allow them to infuse the medicines via her port. It was not an option we wanted to take. We felt it would cause more harm than good.
I needed help and I needed it quickly. I picked up the phone and called our social worker at Penn State Hershey. She had an idea. She suggested that I sign Alex up for a THON organization. I did not really know what that meant, but I was desperate for any solution to my dilemma, so I took her up on the suggestion immediately and she pushed our paperwork through quickly. And, within a short period of time my phone rang.
On the other end was an amazing young lady who introduced herself as Lydia. Lydia explained to me that the Penn State Equestrian Team (PSET) had been chosen as Alex’s THON organization. Lydia was so excited that she had tears in her voice. I explained to Lydia what was going on in our lives at that moment and emphasized that Alex was in a very precarious emotional state. That she had given up. I still remember Lydia’s response. “Don’t worry mom, we’ve got this.” I gave Lydia all of Alex’s contact information and hung up the phone. A few seconds later Alex’s phone started to “ding.” It was Lydia, it was Katie, it was Olivia, it was Ryan . . . the list went on and on; as did the “dings.” For the first time in quite some time, Alex’s head came up off the couch and she picked up her phone; and she began typing furiously. Her phone rang shortly thereafter. She was on the phone for over an hour. To this day I do not know what they said to Alex and to be honest, it does not matter. What mattered was that when she got off that call, the light had come back into her eyes and her smile had returned. She immediately came into the kitchen, got something to eat, and asked me to lay out her medicines. Alex was back in the battle. And now, she had a whole team behind her. Encouraging her, cheering her on, keeping her focused.
PSET stays in constant contact with Alex. During the next summer when Alex was too sick to take any kind of vacation, they would scatter to the winds to be her eyes and ears around the world. She would get postcards from Europe, Asia, Africa, and all over the US. Packages would show up. Letters would arrive. And the ever present “dings” from her phone as texts and emails came in would drive her parents to distraction and have them make her put it on silent just so we could preserve our sanity.
From picnics to the prom; from roller skating to roller coasters; from hockey games to horseback riding, for the past 3 years the young men and women of PSET and later our partner organization, the Professional Golf Management Group (PGM), have never stopped being an integral part of our lives. In her darkest hour, when my then 14-year-old was feeling alone, abandoned, and afraid—they were there. Through their kindness, their compassion, and their commitment they gave Alex the strength to continue her fight against cancer. And when she rang the bell in May of 2019—they were there.
As I think back on that fateful call with Lydia all those years ago, I can say with absolute certainty that she was right. I did not need to worry. The young men and women of PSET and PGM, “they got this.”