Fighting Through the Pain

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.joy wheelchair

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

His sis gives him a lift

His sis gives him a lift

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.

 

Hot tub therapy

Hot tub therapy

 

 

My Histio Warrior Celebrates 2 Years

Joey had a hip bone graft and biopsy two years ago today followed by months of being in a wheelchair, using a walker, using crutches and more than a year of physical therapy. Today, he rode his bike a mile to school. My 12-year-old son Joey is a Histio warrior. On April, 23, 2012, he was diagnosed with Langerhans Cell Histiocytosis. On April 25, 2012, he had major surgery.

joey bike

Although Joey deals with unexplained chronic pain at times, he has not relapsed. Histio is similar to cancer and if it attacks again, he will need chemotherapy. We pray everyday that he will continue to be in remission. At this point, other than checking in with the doctors at Cincinnati Children’s Hospital every few months, Joey could put this disease behind him unless it flares again. But he won’t do that. He is a true warrior. He is fighting for his friends, some he has met and others who he just knows of, who have Histio.

histio image

This picture was borrowed from another Histio warrior.

As I have said before, there is no known cause or cure for this disease. And since it’s considered rare, there is very little funding for research. Histio experts can be found at Cincinnati Children’s Hospital and a Children’s Hospital in Texas. Dr. McClain from Texas came out with a new finding recently that does give Histio families a little more hope because the doctors are starting to understand the disease a little more. You can read that here.

Joey wants to find a cure for himself and his friends. He educates people about his disease whenever he can, he talks to the media, does things for the Histio Association and participates in fundraisers. You can celebrate Joey’s two year anniversary by donating to the Histio Association in his name – Joey Holt – or by donating to Cincinnati Children’s Hospital Medical Center for Histio research in honor of Joey Holt (be sure to write that in the comments).

Our lives changed forever the day Joey was diagnosed and even more so on April 25, 2012 after surgery. But this challenged that was thrown at us has made us appreciate life much more over the last two years. We will find a cure for our friends.

be thankful