A Familiar Place

family shot (2)What was once a very scary and confusing place is now a familiar and comforting place for me and my family. “I know this place like the back of my hand,” my 15-year-old daughter Andi said after telling me where the closest water fountain was at Cincinnati Children’s Hospital Medical Center main campus. I giggled and reflected on the last three years.

Three years ago, we could barely find the ER when needed to or the neurology department on A8, which we had just been introduced to a few years earlier. We would often find ourselves lost in the building if we had to park in a different part of the garage or use a different entrance. But not any more.

Almost three years ago, my son Joey who is now 13, was diagnosed with Langerhans Cell Histiocytosis, a rare disease that doctors argue over whether or not it’s cancer. His white blood cells ate his hip bone causing him to need a bone graft, months in a wheel chair, steroid treatment, months with a walker and then crutches and years of physical therapy (read stories posted HERE for information about LCH and Joey’s battle).

In those three years we have gone from barely being able to find the ER when needed and neurology for Andi’s migraines to knowing where the cool art is in the building, where to find a water fountain, the best items on the lunch menu, where oncology, orthopedics, physical therapy, blood draw, radiology, the emergency room, behavioral medicine, a quiet outside area and so much more are located. We can give directions to those new to the hospital. We are no longer shocked by some of the things we see like children with missing limbs, those in body casts or little ones with burned bodies. We are still saddened but no longer shocked.

We now have favorite nurses in several departments. We know staff members by name, and they know us. We know which techs are better at drawing blood and giving shots. We know which clinics have the best coffee and hot chocolate. We even know most of the valets by name because when you have a kid in a wheelchair or pain, you let someone else park the car. We know how to get massages for the patient and mom, how to get discounted meals and where to get a breath of fresh air without worrying about the neighboring community. We know what days we can find Circus Mojo performing and in which clinics.

Cincinnati Children’s Hospital is so big and complex that it used to be a scary place to my family. Now oddly enough, we find comfort being there. We seek out our favorite art piece, a framed quilt (read about it), when we need a good distraction. We go outside near Alvin and the Chipmunks when we need fresh air. We bring our favorite nurses cookies from time to time and stop by to see our favorite doctors or staff members just to say hi between appointments.

I think the reason it brings so much comfort is because before Joey was diagnosed and in pain, we were lost and frustrated. We needed answers and it was Dr. Neil Johnson at Cincinnati Children’s who gave us those answers and put Joey on the road to recovery. Dr. Johnson is a hero in our eyes, along with all the other doctors, nurses and staff who helped us along the way. The doctors at Children’s have also helped Andi with her migraines. Everyone there is so kind and reassuring.

We’ve learned things aren’t always as scary as they seem and sometimes the places that seem the scariest might just be where you can get the most comfort.

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. 🙂

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