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.

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 http://www.histio.org.

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 Histio.org 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 (gina5620@gmail.com) 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.

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