A True Histio Warrior

Super Joey

Super Joey

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.

Waiting for Results

Joey resting. I love this pic.

Joey resting. I love this pic.

Seeing an oncologist every three months is nerve wracking. Come on, you don’t see an oncologist for anything simple. You see one because of serious illness. My 11-year-old son sees the amazing Dr. Palumbo at Cincinnati Children’s Hospital because he has Histio. My son was diagnosed with this rare disease in April, as most of my readers already know.  So between appointments, we pretend that we are not worried constantly that another lesion is going to show up. Every time Joey has a headache or muscle pain, I reassure him that it’s not Histio (even though I have no clue). When an odd rash (something annoying that seems to come along with Histio) breaks out all over his body, I tell him he has nothing to worry about. That’s usually true other than the time it ended up being the Shingles. So we hold our breath and wait for the next appointment. Some appointments require blood work, some require full body skeletal x-rays, others require MRIS, PET or Cat scans.  Sometimes we know in advanced what will be required and other times we find out upon arrival. The oncology department is considered a day hospital so he is actually admitted for his appointments and we have to be discharged at the end. I think this because no one really knows how an oncology appointment might go and several patients are admitted.So after a week or so of being very anxious about Joey’s upcoming appointment, he saw Dr. Palumbo on Thursday. I fully expected Joey to have blood work since he had the shingles in between appointments but the doctor didn’t feel that was needed. I guess that was good because Joey has a lot of anxiety about needles (By the way he gets four vaccines tomorrow. That should be fun). They did check all of his vitals and order a full skeletal x-ray. That means x-rays head to toe. I worry so much about the amount of radiation he is exposed to but I have to weigh the risks. Getting another lesion and not knowing would be much worse.blood work

Of course no one could give me the results that day. That’s just how hospitals work. So we left nervously awaiting results. Being late on a Thursday and our nurse having Friday off meant waiting through the weekend as well. I called Michelle, our nurse who we love, this morning. She reads from the report “No new lesions identified. Unchanged from prior study.” What does that mean? I understand what no new lesions means and I am thrilled. But what does unchanged from prior study mean? I ask… “It means it’s no better but It’s no worse.” Hmm… I guess I didn’t realize we were still watching the first lesion. I guess somehow I thought that it was gone after surgery. So now, I have a whole new thing to worry about, especially since her voice was not very confident as we discussed that. “Oh it hasn’t changed?” I asked. “No, let me talk to Dr. Palumbo and get back to you,” she said.

So now I wait again. I am sure I am reading into something and it is all normal. At least that is what I keep telling myself. But the waiting… oh the waiting is terrible.

Joey has another appointment in late April/early May. He will at least have blood work, a full body skeletal and MRI at this point. He will have this full workup because it will be the one-year anniversary of his diagnosis and surgery.  I truly can’t believe it’s been 8 months already. I pray and hope everyday that his results come back clean because with each year, his chances of additional lesions or relapse reduce. Come May, I want to have clean test results and have one heck of a celebration – whether that’s a party with friends and family or a family vacation, I hope we are celebrating! We couldn’t have gotten through all this without our friends, family and even strangers so I can’t wait to share the results and hopefully celebrate with you in a few months!

Help us out and tell us how you deal with waiting.