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.

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

 

 

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.

 

Histio Hike Ohio 2014 – For a Cure

histio ribbon“Being with people who understand,” is what Joey, age 12, said when asked what his favorite part is of the Histio Hike Ohio. Last year Joey was able to meet dozens of other kids, and even a few adults, who also have a form of Histiocytosis. Joey has Langerhans Cell Histiocytosis. His white blood cells attacked and ate his hip bone. He had to get a bone graft, was in a wheelchair for quite some time, took high doses of steroids and pain meds and two years later still does physical therapy. He has been in and out of the hospital over the last two years, has regular check ups in oncology for his cancer-like disease and still deals with unexplained debilitating pain that can last weeks, even months at a time.

Some of the kids he has met have gone through intensive chemotherapy and steroid treatment, received bone marrow and/or organ transplants, have had to move away from their friends and family to get treatment at an out of state hospital and so much more.

This disease can attack any of these kids, including Joey, again at any time. It can attack their bones, skin or organs. It’s just like cancer (Read: At Least it’s Not Cancer). There is no known cause and no known cure. The one comfort these kids get is when they can come together and feel normal, even if it’s just a weekend in Shawnee State Park for Histio Hike Ohio Sept 26-28.

We are in the process of forming Team Super Joey for this year’s hike. We have set a goal to raise $1000. There are two ways you can help us raise the money and find a cure for Joey and his friends.TeamSuperJoey_Mockup_Final (3)

1.  Buy a 2014 Team Super Joey Tshirt. Cost is $15 or four for $50. They come in youth and adult sizes. You can buy via paypal (gina5620@gmail.com), be sure to put your size, quantity and address. You can also email gina5620@gmail.com with your order.

2. Make an online donation to sponsor Joey in the Histio Hike Ohio by clicking here (this is a tax write off).

Please help us find a cure and buy a T-shirt and/or make a donation today.

#TeamSuperJoey

Joey Histio flyer 2014 final

 

Circus Mojo Helped Heal My Son

Joey, 12, was suffering from unexplained pain again for the last month… Joey was diagnosed with Langerhans Cell Histiocytosis when he was 10-years-old. The cancer-like disease ate his hip bone away causing him to need a bone graft. Although no one was sure if he’d walk normally again, he can run, play and ride a bike like any other kid… most of the time. But then there are times that he is in such severe pain that he can only get around on crutches or in a wheelchair for weeks or even months at a time. Unfortunately it’s just a horrible side effect of this horrible disease.

joy wheelchair

 

So in early May the unexplained pain started again in his left leg. It eventually got so bad that he was on crutches again, missing school and using the wheelchair quite a bit. Joey became frustrated and borderline depressed. He was missing out on end of the school year fun, couldn’t ride his bike with his buddies or go do anything fun. His oncologist at Cincinnati Children’s Hospital Medical Center ordered test after test to make sure the Histio was not attacking again. Once that was ruled out Joey was able to start physical therapy again. He couldn’t even put pressure on his left foot at the evaluation that Friday. The therapist gave him a few exercises he did over the weekend.

The following Monday he headed to day camp at Circus Mojo in Ludlow, Ky. We knew about Circus Mojo because Paul, the owner, and Sharon, an employee, would often perform in the waiting room of orthopedics at Children’s Hospital when we were there. Joey enjoyed them so much that he had me schedule his appointments around their performance times. Joey and his buddy August headed to camp with Joey’s crutches and wheelchair in tow.

The Circus Mojo staff was awesome about accommodating our special situation. I spoke to Ginny in advance to make sure all would be okay. Paul and his crew made Joey take things slow and didn’t push him to do things that might be hard on his leg. He had physical therapy immediately after camp that day. He couldn’t stop talking about how fun camp was and he was able to get around a little better. The second day of camp came and he was able to do a little more. On the third day he could do even more but there was still one act he wanted to do but Paul told him was too dangerous if he still needed to use crutches. He had PT that afternoon and told his therapist he had to get stronger so he could do everything at camp. On Thursday he arrived at camp with one crutch and barely used it. He was able to do the act.

joey wheel

I drove the boys to camp on Friday. They were both so excited because they were going to learn even more that day and then perform for the families in the afternoon. I showed up for the afternoon performance and could see how excited all the kids were.

joey w circus friends

Joey actually climbed the silks and did what’s called the reverse diaper drop. He was able to walk on a wheel, balance all kinds of things, juggle scarves and so much more. It was awesome! I couldn’t believe this was the same kid who could barely walk at all a week ago. He couldn’t stop smiling.

joey whip pie

I truly believe that camp at Circus Mojo camp played part in Joey’s physical therapy. It gave him a challenge and a goal. He wanted to be able to participate everything. In order to do that he had to do his PT exercises and push himself. It also helped him emotionally and mentally. It gave him something to look forward to everyday. He was excited about learning new acts and seeing his new friends. Camp provided an incentive for him to push himself and get better.

The really awesome part was by Friday… he didn’t need the crutches or wheelchair at all anymore so Joey and Paul found another use for them.

joey balance

 

Waiting for results

I’m sitting in a very small room right now with my son at Cincinnati Children’s Medical Hospital. It’s basically a large closet with a hospital bed, a shelf, a computer, monitor and owl stickers on the walls. Joey is lying in the hospital bed waiting for his Pet Scan. He’s been given pain medicine and other meds necessary for the scan. He looks so relaxed and peaceful as he watches Frozen on the portable DVD player. His eyes are barely open.

joey hospital

He’s not been this peaceful or pain-free in weeks. It brings tears to my eyes to see him like this, to see him at peace.

We are waiting for his Pet Scan. He has to have medicine in him for 45 minutes before the scan can begin. They will scan his entire body hoping not to find any new tumors. Hoping the Histio has not returned. He has pain in his left leg, hip and ankle. It could be that the Histio is eating his bones away again or that he is having another episode of unexplained pain. Although unexplained pain is frustrating, we are hoping for that. If that’s the case we will probably start physical therapy again.

If it is Histio…. we will kick it’s butt!

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