Golf Gave me Back my Child
BY LISA H.
In 2017, my son, James, was active in middle school. He also has mild to moderate hemophilia. For most of his life, his hemophilia was well controlled. He swam, played soccer and, in elementary school, discovered volleyball. In the winter of 2017, he joined a competitive boys’ travel volleyball club.
Easter Sunday of that year, he was at a trampoline park jumping. He said he landed, and his right knee popped and swelled. At the direction of the hematologist on call, I took him to our local emergency room who later transported him to John Hopkins Hospital. After 13 hours, two emergency rooms, an ambulance ride, and an infusion of factor, he was discharged on crutches.
We spent the next several months bouncing between hematology and orthopedics. This wasn’t the first time his knee had popped and swelled. By default, he was started on a prophylactic dosing of factor. His volleyball season and the summer season were effectively over.
In 2018, he was back to playing volleyball again but he started to complain of swelling and pain in both knees. An imaging study of his right knee, the one that had popped, revealed a large bucket handle tear of the medial meniscus and at least two areas of erosion into the bone. Despite swelling being noted in both knees, no imaging studies or follow up were done on the left knee. The entire focus became the right knee.
We consulted with multiple orthopedists and settled on Dr. Leigh Curl in Baltimore. She was the orthopedist for the Ravens and James appreciated her middle-of-theroad approach. At his age, the goal was to attempt to save as much of the meniscus as possible and give the joint time to heal. The need for bone grafts or cadaver replacements should wait.
Eight weeks after surgery, James began rehab. Postoperatively and during physical therapy, it was noted there was swelling in the left leg. The belief was that it was the result of him favoring this leg. When his physical therapist noted that she would have guessed he had surgery on the left leg and not the right leg, I was finally able to convince his medical team to do an imaging study of that leg, just to be sure we hadn’t missed anything.
It was during that scan that they noted a lesion in the left femur. The diagnosis from his care team bounced from tumor to cancer, to infection, back to tumor, and finally settled on a hemophilic pseudotumor. James was placed into a chronic pain clinic and was told that pain shouldn’t be that bad and he should be able to work through it.
In the midst of this health crisis, we had received an email from The Coalition for Hemophilia B that James had won a scholarship for golf clubs and lessons. He was not enthusiastic about winning the scholarship. He was upset because he had lost the sport he loved, volleyball. He was frustrated none of the doctors seemed to believe that he was in pain and that this was just going to be his life. The knee that had been repaired was still causing pain and not healing, and now he had a lesion in the other leg.
I convinced James to just try golf. If nothing else, maybe he could play golf instead of partaking in PE, if the lessons went well. I reached out to the high school who recommended a local golf pro. Instantly he and James connected. James started to smile and show an interest in doing something again.
However, he still struggled with pain. It was a challenge for him to golf more than a hole or two, but he was learning the game. He started to smile again. It was at the end of the lessons, almost 10 months after the lesion was first diagnosed, and over two and a half years of complaints about knee pain and swelling that he was seen for a second opinion at Georgetown University Hospital.
He was diagnosed with a chondroblastoma, a rare bone tumor. Despite never having treated this type of tumor in a person with a bleeding disorder, within a month the teams at Georgetown and the Washington Cancer Institute had diagnosed, developed a plan, and treated the tumor. To my son, who had been told for years that his pain wasn’t real or was neurological, the oncologist said, “Of course you are in pain, these types of tumors are incredibly painful.”
Over a period of two years, my son had gone from travel-level athletics to not being able to walk for more than 10 minutes without needing a break. His weight increased and, for the most part, he gave up any hope of sports. A sadness crept into our lives.
With winter and the removal of the tumor, golf went on hold for a few months. This past spring, James returned to golf, used the scholarship and competed on his high school team. I had alerted his high school coach to James’ history and that he was nervous he wouldn’t be able to walk far enough to play. He didn’t want to commit to the team and let his teammates or the coach down. The coach told James they would take it one day, one hole at a time. If he needed a break, they would take one.
Golf and athletics was about more than winning; it was about building character and friendships. James finished the season, earning a varsity letter and even completing 18 holes on foot. He lost over 20 pounds. His earlier golf instructor pulled me aside to tell me how happy and full of life he seemed on the course. Our close family friends told me how nice it was to see James smiling and joking around again.
As a parent, watching your child endure pain that cannot be relieved, seeing the joy and hope fade from their life is heartbreaking. Golf gave James a new door. It has provided a lifelong sport, a chance to make new friends and a varsity letter. For me, golf gave me back the child who had been lost to imaging studies, doctor visits, surgeries and years of chronic pain.
I look back and I am not sure we would have made it through the last several years without the support of the community. I never would have gotten James on the golf course had it not been for the scholarship from The Coalition for Hemophilia B. I am eternally grateful for the scholarship and the unwavering support of the community and bringing light back into our lives.