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

Five More Things To Know About Rare Diseases

rare disease fact

Earlier this month I wrote a post called 12 Things To Know About Rare Diseases. Since then I have received a lot of messages including other things people should know. So here are five more things you should know:

1. Chemo Stereotypes – “There is a stereotype of all children on chemo being frail, thin and balding,” a mom in my online Histio support group says. “I got grief from a customer in line at the grocery store the other day.  Looking me up and down and prejudging myself and my son.  She was making comments about my son being too big.  I wanted to yell at her and tell her my son is on chemo and steroids try telling a toddler he isn’t really hungry.”

Although TV and movies show us that someone on chemotherapy is thin, frail and bald, that isn’t how it always is. There are several different types of chemo therapy and each has different side effects.rare disease hope

2. A Little Perspective – One mother of a child with Histiocytosis says explaining the rare disease to your child, that could statistically kill him, is heartbreaking. “They (doctors) don’t explain how to answer, ‘Mommy, I don’t want to die.'” She says its hard to hear other parents complain their kids are driving them nuts or they can’t for them to go to school when she’s just thankful her child is still alive.

3. Caregiver Taking Care of Themselves – I hear parents of children with rare diseases talk about how exhausted they are, that they aren’t eating right and that they miss having alone time with their significant other. Yet, they feel too guilty about having someone else care for the child so they can get a break, take a nap or have a date. I rarely ate after Joey’s bone graft. I would literally forget. And when I would eat, it wasn’t healthy and I rarely sat down to eat. I quickly learned that I had to take care of myself so that I was able to take care of Joey. That meant letting other people take care of him even if it was only so I could take an hour nap or run to the store.

4. Dr. Anxiety – People with rare diseases visit the doctor A LOT! They have a lot of scans and blood tests and many go through chemo or other treatments. Many children start fearing the doctor. They worry about needles, treatment and being hospitalized. As parents we have to find ways to calm these fears even though we know all of these things are a possibility.

5. Insurance Headaches – The insurance company often tries to dictate what types of tests, treatments and meds our children can have. They actually question the doctor. This often causes tests and treatments to be delayed or for parents to have the additional worry of how they will pay for it if the insurance doesn’t come through. They also have to spend time fighting with the insurance company, time that could be spent caring for their child.

rare disease

Have you experienced any of these things? Anything else people should know about rare diseases? Anything that surprised you?

Knowing that it might be used in a future blog post, what are things you have done for a family going through something like this? If you are a family dealing with a rare disease, what could others do to help?

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