When my son Kelly was younger, he spent a lot of time with my sister and her family, especially in the summer months. He looked up to his Uncle Allen and cousins and always wanted to do what they did.
This adoration extended to haircuts. Kelly typically has a glorious mop of curls, but each summer at Aunt Amy’s house, he would receive a “summer cut,” similar to his cousins.
In March 2016, we had been living in Cincinnati for a few years, and Kelly came into my room complaining of a headache. I got him some ibuprofen and tucked him into bed with me. It was still cold enough that he had a full head of soft, silky curls. I was so happy to feel them. Then Kelly started vomiting. We went to the ER. This started about a two-week cycle where Kelly would start to feel better and then start vomiting again. His headache would come and go. While we were on our way to an appointment with his doctor, Kelly started to lose his vision.
Kelly Is Diagnosed with Nongerminomatous Germ Cell
Kelly was diagnosed with a nongerminomatous germ cell tumor next to his pineal gland. So in layman’s terms, he had a tumor in his brain. It finally grew large enough to stop his “brain juice” (his words, not mine) from draining into his spine properly. As he put it “that explains the headache.” My son has an amazing sense of humor.
He was officially diagnosed on April 1, 2016. The worst April fool’s joke ever. I was able to keep joking and laughing until he underwent anesthesia. They rushed him into surgery and I started the phone calls home. When they had to shave his head, they saved his curls for me. I don’t have a lock from his first haircut when he was a baby, but I have these. I didn’t ask them to, but I will be forever grateful that they did it.
Kelly Has Surgery, Six Rounds of Chemo and Six Weeks of Proton Therapy
During the first surgery, they inserted a tube to relieve the pressure on his brain, so that the swelling would go down and they could determine their next move. The second surgery created a permanent drain so they could remove the tube. For therapy, his doctors settled on six rounds of chemo followed by six weeks of proton beam radiation (or proton therapy).
We got to go home for a week before his first chemo treatment. Due to the nature of Kelly’s cancer, the chemo regimen was pretty aggressive. He would get admitted for six days and then we could go home for two weeks. It was during the second trip home that we noticed the bit of hair that had grown in was starting to fall out. It was on his pillow when he woke up. He asked for us to shave what was there down further so it wouldn’t be as substantial. We hadn’t thought about those short stubby bristles catching on everything and pulling out. It was almost a relief for him when it had all finally fallen out. His scalp had ached for two weeks straight. His hair hurt. Chemo was rough. But by the second round we were pros at alleviating his nausea.
Radiation happened at the Proton Therapy Center Monday through Friday for six weeks. In the beginning, it would take an hour. Most of that was spent getting him positioned properly. The actual proton therapy treatment only lasted for a minute or so. As he learned the routine, we could get in and out in twenty minutes. Unfortunately, Kelly is part of some small percentage of the world’s population whose olfactory nerves are sensitive to radiation. When the proton beams passed through his nerves it smelled and tasted like someone dunked his head in bleach. Fortunately, this side effect only lasted during the treatment. However, I still don’t use bleach unless he is at school.
Kelly is a little over a year out of treatment. He has had a few hiccups along the way, but overall, he’s been doing very well. There are no signs of any new tumors and no evidence of his old tumor.
Lately, he has been growing his hair out. It’s huge. I can’t help but touch it every time he is near. It calms me. It reminds me he is still here and doing so well. But those soft silky curls are gone. They won’t ever come back, but neither will that little boy who climbed into my bed to tell me about his headache. The young man who lives with me now has a head full of thick, course, and tightly-curled hair. He wears those amazing locks with pride. He is stronger and wiser. And his thick hair reflects that.