Tag Archives: histiocytosis

We’re Not Famous

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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. 🙂

Histio Hike Ohio 2014 – For a Cure

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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

 

Representing Cincy Children’s at Cyclones Game

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We arrive at the arena at 6:30 p.m. We’re early so we are able to watch people file in and find their seats. We know several people coming through the doors so they stop by our seats to talk. Some sit in the rows behind us even though that’s not their assigned seat. Friends are giving  Joey high fives as they all laugh and goof around together. Joey is visibly getting anxious. He keeps asking if it’s time…

cyclones37:10 p.m. finally comes. I walk Joey, my 12-year-old son, to the meeting spot. The U.S. Bank Arena employee hands me a waiver. I sign. He then leads us through the stadium and down toward the ice rink. As we walk down the steps some good friends see us. “JOEY!” they scream. They are all wearing Team Super Joey T-shirts. This makes him even more excited.

We get to the penalty box where the employee places a helmet on Joey and explainscyclones4 the process. First a beautiful girl with an amazing voice goes out on the ice to sing the National Anthem. Now it’s Joey’s turn.

With thousands of people watching, he heads out on the ice, remembering what all of his friends have said “don’t slip on the ice!” He gets to the center where the Cincinnati Cyclones mascot hands Joey the puck. The center from each team is there ready to go. Joey drops the ceremonial puck, shakes hands with the players, grabs the puck and heads off the ice.

cyclones

While he was on the ice, the announcers tell his story:

Watch video: http://youtu.be/8ZMn8Jszyes 

Every day, the experts at Cincinnati Children’s Hospital change the outcome for children and their families. One of those families is here tonight to share their story with Cyclones’ fans. Joey Holt was diagnosed with Langerhans Cell Histiocytocis, a cancer-like disease that causes the white blood cells to attacks bones or other organs, at 10   years old, which led to the disintegration of his hip bone. Joey underwent a bone graft, four months in a wheelchair and a year and a half in physical therapy and still deals with chronic pain periodically, but thanks to Cincinnati Children’s hospital, he can walk, run and do many other “kid” things.

Today, Joey is a happy 12-year old who attends Highlands Middle School, is a member of the school chess club, and “Odyssey of the Minds” team. Joey hopes his love of science leads him to find a cure for Histio someday. Joey’s family are big hockey fans, but this is Joey’s first game!

As we walk back up the steps people reached out to give joey five as they continued cheering him on. He was smiling ear to ear and beaming with excitement. We had a great time watching the game. At least 40 members of Team Super Joey were in the crowd. Several, including Joey, ended up on the jumbotron dancing with their blue Team Super Joey shirts on.

cayton family

cyclones2The entire night was a lot of fun ending with a Cyclones win and indoor fireworks. I don’t think Joey quit smiling the entire time we were there. His sister Andi and all of our friends had a great time too.

This evening was made possible through Cincinnati Children’s Hospital Champions program. They asked Joey to participate and provided our family’s tickets. It was all pretty awesome. cyclones5

The Best of 2013

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The end of a year is a time for many to reflect on the last 12 months. It’s a time to be thankful, a time to look at what you would do differently, a time to reflect on relationships and a time to look at your accomplishments. It’s also a time to plan for the new year. It’s a time to set goals and make resolutions.

My regular readers know that I’m a glass half full kind of gal. We might be given a bad hand from time to time but what we do with that is really what’s important. So today, I am thinking of mine and my family’s accomplishments in 2013 and all the things we have to be grateful for. So many wonderful things have happened in 2013… too many to list in fact but I will give you a few highlights.

1. March 3, 2013 was probably the most important day of 2013 for me. It was the day I met Nick, the man I will spend the rest of my life with.

2. I am grateful for where Histiocytosis, the rare disease my son has been inflicted with, has led my family. I know it might sound crazy but hear me out… I was a person filled with worry and anxiety prior to Joey’s diagnosis. Histio put life in perspective for me. There is no more stressing out about the small stuff… shoot, I barely worry about the big stuff. I know that life will work out. It always does. I now live anxiety-free and it’s awesome. Of course I wish he didn’t have Histio but we are dealing with it.

My Histio Family

My Histio Family

Joey has chosen to be an advocate for the Histio Foundation and Cincinnati Children’s Hospital. He knows he is one of the lucky kids with Histio (no chemo, no organ transplants and he’s going to survive) so he wants to fight for those kids who can’t. My family (cousins, siblings, aunts, uncles, nieces and nephews) and friends have come together to support Joey in his fight. We have virtually met hundreds of people going though Histio and physically met dozens. We have developed an amazing support group and built incredible friendships.

3. My new family, Nick’s family, dealt with something extremely difficult this year – the loss of Nicholas to an accidental heroin overdose. This would rip most families apart but we didn’t let it. Although we deal with the daily pain of this loss, we have come together to fight the heroin epidemic through NKY Hates Heroin. We have been part of the solution and supported each other during the grieving process.

nick specht

4. I am grateful to watch mine and Nick’s five children grow into wonderful young adults. Joey started middle school and Andi started high school. They have both done amazing with the new challenge. Joel joined the National Guard. Jordan graduated this year and committed to going into the Coast Guard in the spring. Josh finished his junior year of college and created a plan for himself. I’m very proud of all five kids.

holt stegner

5. We have had a lot of new life in our family. Nick’s niece brought our newest family member into the world just last week – Keegan. Nick’s nephew and his wife also had a child this year. Two of my cousins announced their pregnancies and are due in late spring. Three of my cousins had beautiful baby girls this year. I love being surrounded by all the babies, playing with them, feeding them and then giving them back when I’ve had my fill.

first cousins

First Cousins (minus five)

cousins xmas

Second Cousins (minus six… 2 on the way)

This year has definitely thrown some challenges at us but we our strong and have made the best of each situation. 2013 has also brought some pretty wonderful things and people in our lives. I can’t wait to see what 2014 has in store for the Holt/Stegner family. Bring it on!

What is your best of in 2013? What are you looking forward to in 2014?

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Q102 Helps Educate Listeners on Rare Disease – Histio

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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!

Wishing My Son Has a Broken Bone

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joey super heroI hope my 11-year-old son Joey has a broken leg! Or maybe a chipped shin bone! Wait, maybe he has torn his meniscus! That would be AWESOME! IT WOULD SERIOUSLY BE THE BEST NEWS A MOM COULD WISH FOR!

I’m not crazy or one of those moms who wishes illness upon her child. I actually love my son to the moon and back and would be willing to take on any pain for him. Unfortunately, I can’t do that. Joey is no stranger to pain. He had ear infections, strep throat and many minor surgeries since he was only a few weeks old. In April of 2012, Joey was diagnosed with Langerhans Cell Histiocytosis causing him to have a lesion removed and a bone graft of his hip (Read about diagnosis). Well, for about the last two weeks he’s been complaining of knee and shin pain. It’s progressively gotten worse. So bad in fact that he is using crutches and missed the last two days of school.

LCH or Histio, is a cancer-like disease. It causes his white blood cells to go nuts. They think he’s sick so they go into action. Only there is nothing bad to attack so they end up eating his bones away. So my son is having severe pain. My immediate thought is ‘oh crap, his white blood cells are out it again. The Histio is back.’ My second thought is ‘Oh God, please let my son have a broken leg, a chipped bone or a torn meniscus.’ I find myself pleading with God to give him one of these ailments instead.

You see, if it is Histio, it won’t “JUST” be surgery, a bone graft, 15 weeks of a wheelchair, months on end of physical therapy, etc… It could be all or some of those things but it will also be chemotherapy. Chemotherapy: the use of chemical agents to treat diseases. That scares me to death! I’ve never had chemo and I’ve never discussed it with someone who has. All I know is what I’ve seen on TV. When I hear of chemo I think of extremely thin, sickly looking people with tons of tubes, loosing their hair and vomiting. Now my friend Aimee assures me this isn’t what it’s really like but it scares me to death.

One step at a time though, right?

So the first step was to see our oncologist, which we did today. The second step was to get x-rays. We did that and are waiting on results. Unfortunately x-rays probably won’t show Histio but they will show a broken bone!!!! Wohoo for a possible broken bone! The next step is an MRI. I am waiting to hear when that has been scheduled for. That will show us if it’s Histio. If nothing shows up there, we move on to a PET Scan.

So I am asking this of my readers tonight as crazy as it may sound. I know something is wrong. My son is in SEVERE pain. So this is what I ask of you. Pray and hope for a broken bone, a chipped bone or a torn meniscus. Pray and hope for something other than Histio because Histio is one bad mother… and because I’m afraid of chemo.

Seriously, if you pray, please pray a lot for my son to be well and strong and for our family as well. And if you don’t pray, send us some good vibes and positive thoughts! Joey and his 14-year-old sister love to read your encouraging comments so comment away!