We’re Not Famous

I’m not famous. My children aren’t famous. Neither is my husband. In fact, there isn’t a single famous person in my family or circle of friends. But I still see all of my family members and friends as super stars. Especially my almost 13-year-old son Joey, AKA Super Joey. Joey is known for his strength and knocking Langerhans out.

Super Joey

Super Joey

Joey isn’t muscular or a big guy. In fact, he’s only 5’1 and under 75 pounds. Yet he still knocked out Langerhans, which was pretty amazing since Langerhans is vicious. I’ve gotten to know him over the last few years and he devours people, mostly kids. Nothing is off limits – he’ll go for the bones, organs and even skin, whatever he can do to take to out his victim. Sometimes even death. It takes a lot to be able to stand up to Langerhans and fight back and even more to beat him down. No, Langerhans isn’t some new trendy boys name or a nickname for a terrible bully.

Langerhans – Langerhans Cell Histiocytois – is a horrible rare cancer that my son beat. This disease, often argued by doctors is to whether it is cancer or an autoimmune disease, is ferocious. It ate Joey’s hip bone causing him to need a bone graft, spend months in a wheelchair, go through lots of physical therapy and much more. Two years later, he still deals with chronic bone pain that puts him on crutches or in a wheelchair for weeks at a time. But the good news is, the LCH is gone. The doctors told him he’s whooped it’s butt and they can’t imagine it will ever attack again. Woohoo!

Super Joey

Super Joey

You’d think we’d be celebrating everyday! And we have celebrated. We are truly ecstatic for Joey but not all of our friends have been so lucky. Our 19-year-old friend Ian Anderson, who also isn’t famous, has LCH in his pituitary gland. He’s been through chemo, surgeries and so much more. He’s probably looking at some sort of life-long treatment and/or follow up.

Princess Sophia

Princess Sophia

Our sweet 5-year-old friend Sophia Lopez, who is not famous either, has another form of Histio – Hemophagocytic Lymphohistiocytosis. This beautiful 5-year-old has spent most of her life in hospitals. She and her mom have traveled to Cincinnati Children’s Hospital from New York City to get the best care possible. They have been living at the Ronald McDonald House for a year while Sophia’s dad and brothers are back in New York. The men her life travel to Cincinnati as often as they can to see their Princess Warrior who has been through chemo, a bone marrow transplant, multiple surgeries and much much more. But that gets expensive and vacation time runs out.

We also think of our friends the Culley/Marshall family. They aren’t famous either. But their daughter Ellisyn is a hero in my eyes. Langerhans didn’t hold back at all when it attacked Ellisyn. By the time she was diagnosed with LCH, it was too late. Ellisyn lost her battle at 15 months old.

So although we are thrilled for Joey, there isn’t a day that goes by that we don’t think about this horrible disease – Histio, Langerhans Cell Histiocytosis, Hemophagocytic Lymphohistiocytosis – that has attacked Super Joey as well as some of our friends (we all met as a result of diagnosis – Histio attacks five in a million).

Most people have never heard of Histio. It doesn’t receive government funding for research, there is no sure cure and there is no known cause. We just know it sucks and can kill. I know some people might think I’m horrible for what I’m about to say but… there are MANY days I wish that a famous person or a famous person’s child would get Histio. Yes, I feel horrible for even saying it but hear me out.

Bengal Player Devon Still’s beautiful daughter Leah was diagnosed with Nueroblastoma and over $1 million was raised in an extremely short period of time. This is awesome! The money went to Cincinnati Children’s Hospital cancer research, which is fantastic. I hate that Leah has this horrible disease but it has brought tons of awareness to Nueroblastoma and childhood cancer.

Lauren Hill, the Mount Saint Joseph Basketball player with an inoperable brain turmor, became famous with the help of the media and has now raised more than $324,000 for the Cure Starts Now. It is horrible that Lauren has been stricken with this disease and she has deserved every bit of media attention she has gotten. She is truly an inspiration to all and I believe her strength and courage will help find a cure for this some day. I have followed her story from day one, cried through the ENTIRE basketball game and will be devastated when she passes. I will always remember that brave angel.

joey rareBut again, I often find myself wishing someone famous or their child would get Histio. I don’t want them to go through all the pain and anguish my friends and family have gone through. I just want that famous person to have a voice for all of us. Believe me, the Anderson, Lopez, Culley/Marshall and Holt/Stegner families have a loud voice. We have been on local media, held fundraisers and educated people but none of us our famous. We don’t have the outlet or the reach that someone famous has. We need a famous person to raise awareness for Histio, to raise funds for research, to help the families fighting this horrible disease and to encourage others to remember the angels we have lost.

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Note: Please contact me at gina5620@gmail.com to learn more about Histio or find out how you can help… You don’t have to be famous. 🙂

Team Super Joey Gears Up for Histio Hike Ohio 2014

This post is written by Joey Holt.

My mom tells me that I am five in a million. That’s because I have a rare, cancer-like disease called Langerhans Cell

2012 - spent months in a wheelchair

2012 – spent months in a wheelchair

Histiocytosis (www.histio.org) that impacts five in one million. I’m 12-1/2 now but was diagnosed with LCH at age 10 after my white blood cells attacked my hip bone eating it away. I had to get a bone graft, steroid treatment, spend months in a wheelchair, use a walker and crutches and endure 2-1/2 years of physical therapy.

Due to debilitating pain, I have been in and out of the hospital over the last 2-1/2 years and missed a lot of school. Luckily I have awesome teachers and am determined to not fall too far behind. I am in the 7th grade this year.

There is no known cause or cure for Histio. Just like cancer, it can attack the bones, organs or skin again at any time. Many children need transplants or chemotherapy to treat. If it attacks me again, I will undergo chemotherapy. Since it is a rare disease, it does not receive state or federal funding for research. The majority of the money for research comes from the families of Histio patients, the same people who are usually dealing with excessive medical bills.

In spite of everything I have dealt with, I am determined to participate in the Histio Hike Ohio this September in honor of Histio Awareness Month but I need to raise funds and awareness.

Histio Hike Ohio 2013 - Histio Warriors and their siblings

Histio Hike Ohio 2013 – Histio Warriors and their siblings

I am asking you to help one of two ways.

TeamSuperJoey_Mockup_Final (3)

  1. Buy a 2014 #TeamSuperJoey T-shirt (pictured below) for $15. You can pay via paypal (gina5620@gmail.com) or by
    cash or check. Payment not due until shirt arrives. Be sure to sport your shirt around to raise awareness.
  1. Sponsor me in the Histio Hike Ohio, which takes place September 26-28. Visit http://ohio.histiohike.org/teamsuperjoey. Whether it’s a $5 donation or a $500 donation, it will help.

Please email questions to my mom Gina (Holt) Stegner at gina5620@gmail.com. Money raised will be donated to Histio research in hopes to find a cure for me and others who have Histio.

Princess Sophia - 4-1/2-years-old, has HLH and lives at the Ronald McDonald House, thousands of miles from home for treatment.

Princess Sophia – 4-1/2-years-old, has HLH and lives at the Ronald McDonald House, thousands of miles from home for treatment.

Super Joey

Super Joey

Sincerely,

Joey Holt    🙂

Please help us find a cure.

Speaking Out for International Rare Disease Day

cyclones3As my regular readers know, my son has a rare disease called Langerhans Cell Histiocytosis. His white blood cells attacked  hip bone eating it away causing him to need a bone graft and spend four months in a wheel chair. I have told Joey’s story for him hundreds of times through the blog, newspapers, doctors, etc… But Joey is ready to tell his own story.

In honor of International Rare Disease Day, Feb. 28, Joey has planned three ways to spread awareness for his disease. And he wanted to be the one to do it.

1. In November, I wrote a post based on a conversation my son and I had called “I just don’t understand why my disease isn’t important.” This post got a lot of attention in the online world. The Histiocytosis Association read it and asked if Joey would be willing to tell his story on camera. He has been wanting to be an advocate for his disease so he was excited. So with the help of a dear friend, he created this video: http://youtu.be/Vpq3BIYlGQ0. Please take two minutes to watch 12-year-old Joey Holt tell his own story.

rare disease fact

2. In early January Joey decided to write a letter to the mayor of Fort Thomas, the city we live in. He asked her to make a proclamation making Feb. 28, International Rare Disease Day, Histiocytosis Day in honor of Joseph Holt in the City of Fort Thomas. The mayor agreed and the proclamation will made at the Feb. 18 council meeting. He plans to be there to answer any questions anyone might have.

3.  Joey asked me to send a news release about International Rare Disease Day and his disease to the local media. He hopes to get interviews with print and online media and on TV. He wants to teach as many people as possible about rare diseases and Histio. At his young age he realizes that people will respond more to hearing the story straight from the child who has been impacted by this cancer-like disease than from his mother, doctors and other experts. He already has an interview setup with an online publication and he is hoping more will be arranged.

rare diseaserare disease 2These are three fairly simple ways anyone can make a difference and advocate for International Rare Disease Day. So consider doing something like this where you live. You can also help spread awareness by sharing this post and showing the video Joey made. Awareness is the key to a cure. Please be part of the cure.

P.S. Be sure to like us on Facebook! And if you Tweet about us, use #teamsuperjoey and @gina5620.

Catching Up

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I have not had a new entry since late March and a lot has happened between then and now. A LOT – LIFE CHANGING EVENTS.

Let’s see…

  1. Attacked by a dog
  2. Son diagnosed with a cancer-like condition, had a bone graph and was in a wheel chair
  3. Daughter turned 13

Yes, I, the crazy dog lover who goes to the dog park every single day and has had a dog her whole life, was attacked on March 31. Very long story short, my neighbor’s dog got loose and she was not home. I was on the sidewalk in front of her house deciding what I should do when the 150 pound Rottweiler mix lunged toward me. He seemed to be going for my face but I blocked him with my arm. Thank goodness because muscles were actually hanging out of my arm when it was over. He actually got my arm and leg a few times. Thank goodness for another neighbor, who in spite of having a baby in a Snuggy on his chest, beat the dog off me because the dog was not going to stop. Unfortunately, my daughter, who is now 13, witnessed the whole thing from maybe 10 feet away. We both still have nightmares. Mine often include seeing her face watching the attack. Thank goodness it was me and not Andi. I did end up with five stitches in my arm, a nasty infection, permanent scars on my arm and leg, a little bit of nerve damage and a new fear of strange dogs. Yes, the neighbor is taking care of things through her insurance and the dog no longer lives on my street.

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. 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. Seriously??? 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 nine weeks in a wheel chair, Joey now uses a walker. He even took a few steps on his own today. He should be able to walk normally in just a few weeks. 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 will have regular scans and tests to check for LCH.

Joey did develop a talent through all of this. Thanks to my co-worker Amy for delivering library items and Artie’s Magic Shop in Covington, Joey has become a magician. He has a lot of fun showing neighbors, friends and family his tricks.

So in the midst of all this, my daughter Andi officially became a teenager on May 28. She had three friends stay the night and had a cake decorating contest. I think it just made me feel older.

So now that you are all caught up… I will try to post regularly and keep my posts much shorter.