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

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?

 

 

Team Super Joey in the Media

cyclones3My amazing son Joey has been in the media a lot lately so I want to have one spot where you can find links to his stories. This will be the spot. I will update this post as needed.

Joey’s goal is to raise awareness for Histio, and hopefully someday find a cure for his disease.

Histio Survivor Prepares for Fundraising Event, Community Press, July 12, 2013
Enjoying the Little Things and Making Memories, Looking4ward2tomorrow, Nov. 15, 2013

Fort Thomas Boy Fights Rare Disease With a Strong Voice – WCPO Digital, Feb., 2014

Teen is Survivor of Bone-Destroying Disease – Community Press, Feb. 25, 2014
Histio Awareness Video – Produced by Cathy Ross, Starring Joey Holt, Requested by Histio Association, 2014
Rare Disease Day Proclamation, Fort Thomas Matters, Feb., 18 2014
Team Super Joey Fights Histio, Rare Disease Day, Feb., 2014
Joey Advocates for Histio & Rare Disease Day, Fox 19 Morning News, Feb. 28, 2014
Joey is Five in a Million, Cincinnati Childrens Hospital Blog, Feb. 28, 2014
Follow Team Super Joey on Twitter @gina5620 #teamsuperjoey
Follow Team Super Joey on Facebook at Raising2tweens
Thanks to everyone who has shown their support!
cyclones2 cayton family cyclones rare disease hope waiting for trainTeam Super Joey
My Histio Family

joey super herosuper joeyHistio Warriors and siblingsmy histio hike 2

 

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.

Another Mother’s Experience with Rare Disease

Joey Born of California was diagnosed Histiocytosis at 6 months. He’s 5-1/2 years-old now. His mom Tracy sent me the post below after reading 12 Things To Know About Rare Diseases. It brought tears to my eyes. Traci gave me permission to share this with all of you.

Joey at 6 months, right before diagnosis

Joey at 6 months, right before diagnosis

I wish people knew that it doesn’t stop when you hear remission. Joey has had three years in remission. I still have nightmares, he still talks about dying, my other kids still obsess about Histio. Our normal will never be the same. Joey’s doctors won’t even clear him for public school yet… so we still homeschool. He has Sensory Processing Disorder as a result.

His bones are weaker, he is shorter than most kids his age, his scars bother him, he’s terrified that every single adult he meets is a doctor or nurse. And when we do go to the doctor I have to hear him ask “no chemo, right mommy?”

Joey preparing for his transplant

Joey preparing for his transplant

People don’t get that I still panic when Joey isn’t his usual self, that even the thought of scans coming up can send us into panic, that a limp scares us, a bloody nose makes me question his remission. They don’t get that I can’t just walk away from the world of Histio and childhood cancer and never look back. That when he looks pale, I fight not to ask for a complete blood count. They don’t understand that when they DO have to do labs, I NEED a copy of results in my hands as soon as possible.

People don’t get that I celebrate everything. That first loose tooth, first time on a bike. The first time he sang his ABC’s. When he figured out how to spell his name. The first time he went to the park without a face mask. A trip to the beach five years after the day he went in to the OR for his biopsy.

They don’t understand that my son’s baby book is filled with milestones that they would never think of. First surgery (Dec 31, 2008), first steps (pushing an iv pole), first chemo, first clean scan. First (and second through sixth) relapse. First hospitalization. Make a wish trip. That his baby book will never have first loose tooth (because he lost 12 teeth in surgery due to damage from chemo) and the remaining 8 are crowned.

My friends left. Some were honest and told me “I just can’t be close to a dying baby” or “I don’t want my kids to get to know a kid that might die.” I get it, I do. But it doesn’t make it hurt less. And now they suddenly want back in my life, and I just say “no” because I am still angry. The friends that matter are the ones who at least tried. Even just once. Even my own sister-in-law doesn’t know my son. Because she told me she would not let herself get to know and love a dying nephew. Not even family will stick it through all the time.

joey born current

Five More Things To Know About Rare Diseases

rare disease fact

Earlier this month I wrote a post called 12 Things To Know About Rare Diseases. Since then I have received a lot of messages including other things people should know. So here are five more things you should know:

1. Chemo Stereotypes – “There is a stereotype of all children on chemo being frail, thin and balding,” a mom in my online Histio support group says. “I got grief from a customer in line at the grocery store the other day.  Looking me up and down and prejudging myself and my son.  She was making comments about my son being too big.  I wanted to yell at her and tell her my son is on chemo and steroids try telling a toddler he isn’t really hungry.”

Although TV and movies show us that someone on chemotherapy is thin, frail and bald, that isn’t how it always is. There are several different types of chemo therapy and each has different side effects.rare disease hope

2. A Little Perspective - One mother of a child with Histiocytosis says explaining the rare disease to your child, that could statistically kill him, is heartbreaking. “They (doctors) don’t explain how to answer, ‘Mommy, I don’t want to die.'” She says its hard to hear other parents complain their kids are driving them nuts or they can’t for them to go to school when she’s just thankful her child is still alive.

3. Caregiver Taking Care of Themselves - I hear parents of children with rare diseases talk about how exhausted they are, that they aren’t eating right and that they miss having alone time with their significant other. Yet, they feel too guilty about having someone else care for the child so they can get a break, take a nap or have a date. I rarely ate after Joey’s bone graft. I would literally forget. And when I would eat, it wasn’t healthy and I rarely sat down to eat. I quickly learned that I had to take care of myself so that I was able to take care of Joey. That meant letting other people take care of him even if it was only so I could take an hour nap or run to the store.

4. Dr. Anxiety – People with rare diseases visit the doctor A LOT! They have a lot of scans and blood tests and many go through chemo or other treatments. Many children start fearing the doctor. They worry about needles, treatment and being hospitalized. As parents we have to find ways to calm these fears even though we know all of these things are a possibility.

5. Insurance Headaches – The insurance company often tries to dictate what types of tests, treatments and meds our children can have. They actually question the doctor. This often causes tests and treatments to be delayed or for parents to have the additional worry of how they will pay for it if the insurance doesn’t come through. They also have to spend time fighting with the insurance company, time that could be spent caring for their child.

rare disease

Have you experienced any of these things? Anything else people should know about rare diseases? Anything that surprised you?

Knowing that it might be used in a future blog post, what are things you have done for a family going through something like this? If you are a family dealing with a rare disease, what could others do to help?

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Dessert, Snack or Breakfast

My 12-year-old is on a mission to gain weight – doctor’s orders. We don’t want to do this through cheeseburgers and chips. Instead, we are trying to do it the healthy way – lots of protein, loaded with nutrients and calories.

Joey usually isn’t hungry in the morning or just doesn’t want to take the time to eat. So we wanted to come up with something simple and delicious.

graham crackerGraham cracker PB&P

What you need:

Graham crackers

Jif All Natural Peanut Butter

Instant Chocolate Pudding – Follow box instructions using 2% or whole milk

Spread 1 Tbs of Peanut butter and a heaping Tbs of chocolate pudding on a graham cracker. Top it off with another graham cracker. Repeat until you make desired amount. Put them in an airtight container in the freezer. Chill four hours. They will keep in the freezer for a few weeks.

Joey also loves grabbing these as a quick snack or dessert. They are high in calcium and protein.

What are your favorite go-to recipes?