By Gina, United States, February 11, 2014
In April of 2012, my son had been complaining for a few weeks about pain in his leg. It first appeared as a pulled muscle in his thigh but it kept getting worse and seemed to be spreading. I took him to the pediatrician who after blood work and x-rays told me it was growing pains. My gut told me it was much more. I scheduled an appointment with Commonwealth Orthopedics in Northern Kentucky hoping they would do a MRI. They refused to do the MRI saying it would be emotional for him and that it was just growing pains. Again, my gut told me it was much more. He literally fell to the ground the next morning when he tried to get out of bed. I called the pediatrician insisting it was more and was finally given a referral to Cincinnati Children’s Hospital Orthopedic Center. At this point, I was convinced my son had Muscular Dystrophy. His leg literally dragged behind him, he didn’t want to do any activities at all and eventually started using crutches. The doctor at Children’s took it serious, agreed it was much more than growing pains and scheduled an MRI for the next day, Saturday, April 21, 2012. Within five minutes of leaving the MRI, they called and said they saw something and figured it was just an infection. The woman told me we’d need to see the doctor early in the week for an antibiotic. I was so relieved to know they had an answer that I cried of joy. That quickly changed on Monday, April 23.
Dr. Johnson of Cincinnati Children’s had his nurse Judy call me Monday morning. “Ms. Holt, we need you to bring Joey in this afternoon and you might want to bring your husband,” she says. I explain that we are divorced and that his job is not nearly as flexible as mine. I ask if it’s okay if I come by myself. “Yes, that’s fine.” At this point I’m still thinking he just has some infection and needs an antibiotic. I quickly wished Joey’s dad, my dad, my mom, brother or some other adult had been with me.
“It’s not the big C,” Dr. Johnson immediately says. Joey jumps in with “I know what the big C is.” He’s a funny kid. The doctor continues by telling me that his hip bone has been eaten away, he has a rare condition called Langerhans cell histiocytosis (LCH), which is only found in about 5 in 1 million kids. Adults can have it but it’s usually diagnosed in children between birth and 4-years-old (Joey is 10). He explained that it’s in the cancer family but there is debate about whether it is a cancer or not. He told me that they don’t know much about it, including how it is caused. I remember him saying something about chemo if the bone graph of his hip doesn’t work. I believe my mind went completely blank at this point. I am not sure that I heard or understood anything else.
Joey was sitting right there for all of this so I stayed as strong as I possibly could. I was so numb. Next thing I know, we are in x-ray so he can have more tests. I asked to step out of the room for a second and just break down completely. I called his dad and explained what was going on the best I could. I then got myself together for Joey and headed home. Once I wheeled him inside, I called my parents, siblings and best friends. His dad came over and we started looking the disease up on the computer and preparing ourselves for the surgery that was to take place just two days later.
To recap, we were told for weeks that it was growing pains, saw the Children’s Hospital orthopedic on a Friday, MRI on Saturday, diagnosis on Monday and a biopsy and bone graph on Wednesday. It was crazy!
The 5 hour surgery went as well as could be expected and he was sent home in a wheel chair. We were told that he could not bear weight at all for 8 to 10 weeks (it was 9). I have a steep hill and several steps up to my house. My son had to be carried in and out the first few weeks. We only left for doctor appointments because it was too hard to get in and out of the house. Luckily some friends helped me track down a stair lift and get it installed at a reasonable price. This made our lives so MUCH EASIER. It’s amazing how the little things do that.
He was recovering extremely well for two weeks. We sent him back to school in the wheel chair on a Monday. He came home tired but I figured that was expected. He ended up screaming out in pain all night. It was awful. We called the doctor the next morning and went in. Our orthopedic wasn’t there but another one came in to see Joe. At one point we were told he was going to be in a hip spica cast which meant he wouldn’t be able to sit up, go to the bathroom or anything on his own. I once again was in complete shock. Luckily there was a nurse named Kelly who was a true advocate for my son. She asked all the right questions and demanded tests that made the doctors realize the cast wasn’t needed. Apparently he had a nerve issue from a piece of the graph that had moved and hit a nerve in his leg. He would just scream out in pain over and over again. He was admitted to the hospital for five days where they ran more tests and tried to manage his pain. I finally just asked to come home and manage the pain myself.
Pain management suggested we try acupuncture so we did. Kristen at Tiny Needle Acupuncture was truly amazing. Once the needles were in, Joey said “this is the first time I have been pain free in months.” Tears just rolled down my face. I was so thrilled my son was pain-free, even if momentarily. After a few visits though, he was completely pain-free. I was a skeptic but not anymore. I even tried it for my lower back and it was great.
After four months in a wheel chair, Joey started using a walker. After a lot of physical therapy, he is able to walk normally but still deals with chronic pains. He probably won’t ever be able to play sports but we don’t even care about that at this point. We have come so far. Unfortunately, LCH can reactivate at any time and in any part of the body. The treatment could vary from surgery and steroid treatments to chemo and many other invasive treatments. Luckily there is only a 33 percent chance it will reactivate in Joey’s bones or skin. It’s a very small chance that it will infect his organs (Thank God). Joey has regular scans and tests to check for Histio.
Joey realizes he’s one of the lucky ones. Many kids with Histio need organ transplants, chemo or even pass away. A year and a half after his diagnosis, Joey declared he wants to be part of the solution. There is no known cause and no known cure. Many Histio patients can’t fight for a cure because they are dealing with their own battle. Joey wants to speak on behalf of Cincinnati Children’s and the Histio Foundation to educate others, raise money and find a cure for Histio.