My head is swimming right now. Joey had a follow up with oncology today. He is two years free of active disease. That means there has been no evidence of Langerhans Cell Histiocytosis for 24 months! Dr. Palumbo, Joey’s oncologist, considers Joey Histio-free and no longer a risk for relapse! Now with that said there is still a small chance but it’s VERY small. Dr. Palumbo said we no longer have to follow up with him unless we need him. Wohoo!!
So you would think I would be partying and overjoyed right now but I’m actually experiencing a mixture of feelings. Joey went to this appointment in a wheelchair. He is having horrible leg pain. The same type of leg pain that he has experienced for two years since his biopsy and bone graft. Dr. Kenneth McClain, the world’s leading LCH expert, told me via email that he sees this type of unexplained pain in patients who have had bone LCH often. Unfortunately he doesn’t know why or how to fix it although he said it’s something he’s working on.
Dr. Palumbo, our social worker Molly and Dr. Palumbo’s assistant Michelle asked Joey’s dad (Troy) and I to go to a conference room while Joey stayed behind. During our walk to the conference room I started thinking they were going to ask me if he was faking. I even whispered to Troy that they better not state that. I was ready to go off if they even brought up the idea. That’s not why we were called in though. In fact, they repeatedly stated they knew he wasn’t faking.
Dr. Palumbo assured us that there is no active disease and he is not worried about it attacking again. He did say however that he was concerned about Joey’s pain. Joey has post traumatic stress disorder. Dr. Palumbo suggested that maybe some of the pain is stress and anxiety related. His dad and I completely agree with that. None of us believe it is the only thing causing the pain but it is definitely a contributing factor.
The oncology team was happy to hear that we already have Joey seeing a psychologist at Cincinnati Children’s and referrals for a psychologist who deals with pain and biofeedback and a psychiatrist who works with kids who deal with anxiety and have been through a lot.
Dr. Palumbo did bring up something that I have thought about and talked with Joey’s psychologist about a thousand times… Joey and I have been very active in the Histio community with raising awareness and money. He asked if it would be easier on Joey if we weren’t so involved. I knew what he was going to ask before he finished the question because I have thought about it so many times. I have discussed it with Joey. I explained to Dr. Palumbo that Joey says he has to be a spokesperson for these kids who are so sick that they can’t speak for themselves. I also told him that the psychologist feels this is to important to Joey to give up. But I completely understand him asking questions. He also asked if Joey understood that he didn’t have the type of LCH that is fatal. Joey absolutely knows that. However, Joey often has dreams that the LCH is back or that one of his friends with Histio takes a turn for the worst.
Once we went back to the examination room, Dr. Palumbo told Joey that I shared his dream with him. “Joey, I need you to know that you are not going to die and I am confident the LCH is no coming back,” Dr. Palumbo said to Joey. I think Joey needed to hear that. He needed to know that his oncologist believes he is completely fine. Dr. Palumbo also told him he was concerned about his anxiety and thought it was contributing to the pain. He told Joey he was so confident that the Histio wasn’t coming back that he didn’t need to follow up with oncology any more. Joey seemed a little relieved.
He still has to follow up with orthopedics so they can check his bone graft. He will continue counseling, massage therapy and physical therapy.
Although I’m relieved the disease is inactive, I worry about his worry and leg pain. I hope everyday that I am making the right decisions and not contributing to his anxiety. So now we concentrate on letting go of the worry (for both of us) and getting him pain-free again.
Laying in bed last night I kept hearing a noise in the distance. At first I thought was it a cat outside? But then I realized… it was crying… it was Joey crying. He had been dealing with pain on and off for weeks now but it had become unbearable last night.
Joey has missed about six days of school since mid-August due to leg and hip pain. He ends up in the nurses office almost daily, sometimes a few times a day, to stretch and try to deal with the pain. It often becomes too much and he comes home early from school.
This is a side effect from Langerhans Cell Histiocytosis (Histio or LCH). LCH has recently been reclassified as a cancer instead of a cancer-like disease. Joey’s white blood cells attacked his hip bone eating it away. After a month or more of excruciating pain he was diagnosed, had major surgery, spent a lot of time in Cincinnati Children’s Medical Hospital, spent months in a wheel chair and years in physical therapy. The Histio is inactive at this time but the pain isn’t. In fact, it has become more and more frequent. The unexplained pains can last an hour, days or weeks. It prevents him from being able to do normal kid things
We have tried prescription pain meds, over the counter pain meds, yoga, acupuncture, Reiki, vitamins, herbs, a special diet, massage, chiropractor, heat, ice, a tens unit and lots of physical therapy. Medicine doesn’t seem to help at all. The multi vitamin, protien shake and Turmeric definitely doesn’t hurt him so he continues to take it. Reiki, massage, acupuncture, PT, heat and the tens unit give temporary relief. Temporary relief is better than no relief so we continue to do these things no matter the cost or sacrifice.
I spoke to the lead LCH expert via email recently. Dr. McClain told me that the unexplained pain seems to be common in those with bone LCH and he hopes to some day figure out why and how to get rid of this horrible side effect. We can only hope and pray that he or another doctor figures it out. But until then, we continue to try anything we can think of. And when Joey isn’t looking, I break down in tears because it’s not fair that my almost 13-year-old boy has to live with chronic pain.