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 ( 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 ( 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 Whether it’s a $5 donation or a $500 donation, it will help.

Please email questions to my mom Gina (Holt) Stegner at 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


Joey Holt    🙂

Please help us find a cure.

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!

12 Ways to Help Someone in the Hospital

Whether it’s a dear friend, a family member or someone’s child in the hospital it’s natural to want to help but people often don’t know what they can do. I have a lot of hospital experience – not only have I been a patient, I have had to take care of my son, who has a rare disease and has been in and out of the hospital, and my mother, who recently spent two weeks in the hospital.

While caring for my loved ones I got several calls from people wondering what they can do. Sometimes it’s hard to think of things on the spot and sometimes you just don’t want to ask. So I thought I’d put together a list of things to do for someone (and their family members) while in the hospital.

1. Don’t ask if there is anything you can do, just do it.

20140218_1232492. Snacks for the hospital room. This is helpful for family members who are taking care of the patient. A few of my co-workers put together a box of snacks for us while my mom was in the hospital. It was great.


3. Bring new pajamas. Most patients hate the hospital gowns and if they are allowed to wear regular pajamas they appreciate a new pair.

4. Drop off books, magazines and games that can be played with one other person in bed. Being in the hospital can be boring and the patient or family caregivers might want a distraction.

5. Visit but keep it short. Visitors are appreciated but the amount of visitors can often be overwhelming.  If you are the only visitor, assess the situation and maybe stay a little longer.

6. Drop off the patient and family members their favorite beverages. This saves them from having to run to vending machines and spending extra money.

7. The hospital provides meals for the patients but not the family member who stays with them. Cincinnati Children’s Hospital sells meal cards for family members for $5 each. Having these cards allows the caregiver to not have to leave their child in the room alone while they eat. Many hospitals sell gift certificates for the cafeterias. These are also helpful for family members staying with the patient.

8. Show up with a cup of coffee (or other favorite beverage for the family member) and insist on staying with the patient while the family member gets a break from the room.

9. Send balloons, cards and/or flowers to brighten the room.

10. Remember that the patient and immediate family members might be extremely stressed and worried about the patient’s condition. Even if you are upset or worried do not show it in front of the patient. Take a walk down the hall and pull yourself together. The patient doesn’t need to worry about their visitors too.

11. If a parent of young children is in the hospital or a child is in the hospital taking the parent away from the other children, see what you can do to help. Drop off dinner to the family members at home and offer rides to extracurricular activities and school.

12. In the words of my 12-year-old son: “Candy, bring candy, candy is always good.”

Do you have any suggestions to add?



Q102 Helps Educate Listeners on Rare Disease – Histio

My amazing boyfriend Nick Stegner secretly wrote a letter to Cincinnati’s Q102 morning show nominating me for the Women to Recognize contest. I won!!

Jeff, Jenn and Fritsch (my favorite radio personalities) surprised me with a phone call to my cell. I call in to win so often that I recognized the number. I didn’t know what to think. They read Nick’s amazing letter to me (listen to the audio above – click on the arrow next to the speaker). It was so sweet it brought tears to my eyes. His letter talked about our relationship, my fight for my son and his disease Histiocytosis and our fight against heroin. At the end, the morning crew gave me a chance to talk about Histio. I explained what the disease is, how it receives no funding to find a cure and how it is considered rare. Jeff told people that if they wanted more information they should visit

Not only did I win a $100 gift certificate to a Jeff Ruby restaurant and a $100 gift certificate for Mitchells Day Spa, I got a chance to educate listeners in Cincinnati on Histio. I was able to spread the word. Hopefully saw a few more hits today and maybe even received a few donations. Thanks Nick and Q102!

Find a Cure for Joey

super joeyMy 11-year-old son Joey suffers from Langerhans Cell Histiocytosis. His white blood cells attacked his hip bone and ate it away causing him to need a hip bone graft and spend several months in a wheel chair. He’s been in and out of the hospital for the last 16 months. This disease could attack again at any time. There is no cure. There is very little funding for researching. You can help us find a cure for Joey and the thousands of other kids this disease affects.

My son is training for Histio Hike Ohio that takes place at the end of September. He plans to do the six mile hike. He must get his leg and hip stronger to be able to participate without pain. He walks, rides his bike and does his physical therapy exercises everyday. He is looking forward to meeting other kids with Histio and being able to talk to them about what he is living with and what he’s been through. This hike has given him something to look forward to and an incentive to work hard and get stronger.

There are two ways you can show Joey your support and help find a cure for his disease.

1. You can sponsor him in the hike by going to this site. We truly appreciate your donation whether it’s $5 or $500.

2. You can buy a Team Super Joey T-shirt (art below). Shirts cost $15. They come in men’s and youth sizes and should not shrink. They are super soft light-weight Ts. Joey’s 14-year-old sister designed the shirts. You can email me your T-shirt order ( or put it in a comment on this post. If you know me personally, you can give me the money or anyone can pay via paypal by entering my email address. We will ship T-shirts to those out of the Greater Cincinnati area at no extra charge. Proceeds will be given to Histio research.

T-shirt art - the word "Team" will be above Super on the T-shirts

T-shirt art – the word “Team” will be above Super on the T-shirts

It would be amazing for Joey to see people in the community, family and friends sporting these T-shirts in support of him.

Please help us find a cure for Joey and all the other kids who suffer from this rare disease (or rarely detected) by making a donation and/or buying a T-shirt. We truly appreciate your support!

Please leave a note here in encouraging Joey in his training for the hike. He loves reading your words of encouragement.

Please follow Raising2tweens on Facebook.

Home Sweet Home

my family

my family

As we pulled in the driveway and unloaded the car all I could think of was sleeping in my own bed. I lugged our bags up the steps, sent Joey up the stairlift, got him settled on the couch with a cartoon and then collapsed in my bed. A few hours later I feel like a new person. I would be looking forward to a good night’s sleep in my bed tonight but instead, I will be sleeping on a bus with a bunch of middle school kids. Wait, I should rephrase that. Instead, I will be losing my mind awake all night on a bus with a bunch of middle school kids.

Oh the things we do for our children! We are leaving tonight for Washington D.C. for the 8th grade trip. We will change in a gas station tomorrow and start touring the city immediately. I won’t see a hotel room until late Thursday night. Attention other 8th grade parents: What were we thinking when we signed up for this trip????? I guess we were thinking we wanted to have this time with our kids.

I’m sure you are all curious as to how Joey is doing. He’s home. He can walk. He’s dragging his leg a little but he can walk And it doesn’t hurt. I don’t know if it was the steroid injection, the physical therapy, the massages, the acupuncture or a combination of all but he can walk without pain and without assistance! We decided to do outpatient physical therapy instead of inpatient rehab. He will have acupuncture, pysical therapy and a massage on Thursday. I really think that we just overdid on it spring break. His body hadn’t done that much physical activity in a long time. Now I know to watch the amount of activity and to get him a massage or other treatment immediately if we do a lot. He’s also going to increase his exercises at home to try to strengthen the hip and leg.

I really don’t know why we had this setback (and neither do the doctors) but we do know that it’s NOT LCH and that’s what’s really important right now. Although I know with my network of friends and family and our doctors at Cincinnati Children’s Hospital that we could defeat Histio again, I really don’t want to take that battle on. And our fight with Histio has prepared us to deal with almost anything else without blinking an eye. We got this!

Joey loves seeing your comments so please leave words of encouragement. Oh and wish me luck on this bus trip!

Be sure to check out Raising2tweens on Facebook.

P.S. If you are on this trip with me, let’s avoid talking about Joey’s condition. I want to focus on Andi for the next few days. She deserves it!

One Year Of Histio; Overcoming the Challenge

Joey, Andi and I stop to enjoy Stone Mountain

Joey, Andi and I stop to enjoy Stone Mountain

The last few weeks have been very emotional – happy, sad, reflective – for my family. It was this time last year that we were trying to find out what was wrong with Joey. He was in extreme pain and we were not getting answers. He went from having pain similar to a pulled muscle to not being able to get out of bed within a few weeks. It all started sometime in March but it wasn’t until the end of April that we were told he had Langerhans cell histiocytosis (LCH). Prior to diagnosis, I already had Joey using crutches to get around and the elevator at school because it was obvious that something was seriously wrong.

I remember trying to take him on adventures over spring break. He would try to go on short hikes with us but would end up in too much pain to continue. Last Easter he had tears as he tried to hunt for eggs with his cousins. He could barely maneuver through grandma’s yard. He stopped riding his bike and walking to the park or local candy store with his friends. He would come straight home from school and just lay in his bed or on the couch for the rest of the day. This went on for weeks. I was so frustrated. The initial tests didn’t show anything and the doctors weren’t really pushing for answers. “Growing pains” is what they kept telling us. My response “growing     pains don’t make you fall to the ground when you try to get out of bed!”

Joey using a walker after three months in a wheelchair

Joey using a walker after three months in a wheelchair

Once he was diagnosed at Cincinnati Children’s Hospital, things moved quickly. We were given the news on a Monday and he had a biopsy and bone graph of his hip on a Wednesday. We would never know our old “normal” again. Joey spent several months in a wheel chair and couldn’t finish the last two months of school. Then he moved to a walker, crutches and then finally on his own.So we have just past the time when all the pain started one year ago and we are quickly approaching the one-year anniversary of his surgery. There hasn’t been a day that has gone by in the last year that Andi, Joey or I haven’t thought of Histio and the way it has impacted our lives. But it’s been more evident in the last few weeks, especially as we celebrated Easter and explored Atlanta on Spring Break.

Joey and Holland goofing around

Joey and Holland goofing around

Joey ran through my parents’ yard collecting his eggs. He had no issues getting up and down the hill. In Atlanta, he hiked down Stone Mountain and played on all the rocks. He then did an obstacle course and rock climbed. I sat on the mountain for a while watching him goof around with his sister and friends. They posed pictures acting like they were falling off the cliff and jumped from one rock to the next. I felt tears build up in my eyes and eventually run down my face. Could this possibly be the same kid who couldn’t walk up the street, was in a wheelchair less than a year ago, who needed a stair lift to get out of the house and couldn’t get out of bed on his own? Is this really the child who has a rare cancer-like disease and was told only a year ago that he might not be able to walk again? Could this be the boy who has a “fake” hip?You know, although it was definitely Joey climbing all over that mountain, it wasn’t the same boy from a year ago. That boy, that sick little boy whose world had been turned upside down in an instant, that boy who was sad and helpless, that boy was gone. The boy I watched climb the mountain was a brave, healthy boy who overcame a major challenge that was thrown his way a year ago.

My family will never know our old “normal” again but we have definitely found our new normal together and we will continue to do so as new challenges are thrown our way.

Since the one-year anniversary is coming up, Joey will have new scans, blood work and tests next week. This is a proactive measure since we don’t want the Histio to sneak back up on us. I don’t think that will be an issue though. I think Joey, his sister Andi and I will be celebrating Joey’s clean bill of health next Thursday night!

The kids and I would love to read your thoughts about all of this and hopefully some encouraging words here in the comments.

Cincinnati Children’s Brings Parents Together at New Urgent Care Facility

I was invited to a super secret bloggers night out at the new Cincinnati Children’s Hospital Medical Center satellite location in Green Township. I received the email and thought “wow, I wonder why I was invited.” I was super excited though. I wanted to see this new location that will offer urgent care and they were promising dinner and a super cool swag bag (it was super cool). Plus, everyone who follows this blog knows how much Cincinnati Children’s means to me. As soon as I arrived and starting to talking to other guests, I quickly realized why I was chosen. I blog about Children’s Hospital a lot. I also blog about my son’s rare diseaseHistio. The public relations staff had seen my blog and thought I’d be a good fit for this. As I talked to other guests, I realized they also blog about Children’s Hospital, their experiences and their children’s rare diseases. Wow!

I was in a room with several parents who have children with rare diseases. I couldn’t believe it. And then… I couldn’t believe the emotion that filled my whole body. I was overwhelmed. Here are a bunch of people who can actually relate to me. None of them are going to say “everything happens for a reason” or “God only gives you what you can handle.” Although I believe in those things, they are not comforting when you have a sick child. None of them are going to ask me about life expectancy (luckily Joey’s prognosis is good). Not one of them asked me how I can stay so strong because they all get that it’s not a choice. No one tilted their head and sadly asked “how is he?” They all just got it. Please don’t get me wrong. I appreciate everyone’s concern and I understand that most people just have no idea what to say to me.

And the most amazing part was how positive everyone was. I was in a room full of parents with children who have rare diseases and everyone was super positive and upbeat. Everyone talked about how writing has been therapeutic, how getting involved with the hospital has helped them, how they didn’t view any of it as a problem but just as another challenge in life and no one focused on whether or not their child had a life expectancy but instead how they are working toward finding a cure. It was truly therapeutic to talk these parents. In fact, some of us talked about getting together on a regular basis. Amazing is the only way I know how to describe this.

So if you live in the Green Township area, you might want to know more about the facility. It was really cool! It is extremely user-friendly with several self check-ins, information desks on every floor, color coded ceilings and floors to lead you to the right department and fun paintings on the walls. One of my favorite things was the lava dots on the floor. They actually change colors (see picture). This facility offers an orthopedic center, physical therapy, speech and occupational therapy, hearing tests, MRI and x-ray services, an urgent care and much more.

The new facility at 5899 Harrison Ave., Cincinnati, April 29. They will have a grand opening celebration on April 20 from 11-2. Families are invited to enjoy food, tours and fun activities.



OT room

OT room

Lava dots

Lava dots

Lava Dots!

Lava Dots!

welcoming space

welcoming space

One of the hallways

One of the hallways