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. 🙂

My Son Has a Rare Disease

histio ribbonMy son has a rare disease. Ten months ago we were told about LCH (Histio), something we had never heard of. I have spent the last ten months sharing our story through Facebook, my blog and the media. I want people to understand what LCH is and provide the support to those who don’t have family and friends nearby.

During this time, I have made friends with other Histio parents. I have watched friends lose their children to multi organ LCH and HLH. It has been heartbreaking to say the least. I have watched others fight and win their battle with Histio. That has been fantastic! My son has won his battle… for now. Yes, it can come back at any time but we are determined to beat this.

Today is National Rare Disease Day. It’s a day to try to make people more aware of rare diseases. Ironically enough, I received a call from a mother this morning who is concerned about her son. I don’t know this mother but we have mutual friends who connected us. Her son’s story sounds similar to Joey’s prior to being diagnosed. I don’t know if her child has Histio but I know she needs answers.

The fear, the concern, the unknown, the helplessness sounded all too familiar. I held back tears while talking to her; not because I was worried he had LCH but because I know what it’s like to be a parent and be that scared. I reassured her that even if it was single bone lesion LCH that it would be okay. She’d have a hard road ahead of her but her child would be okay in the long run. I told her that she was in the best part of the world – Cincinnati area – to be if her child did have this because the experts are at Cincinnati Children’s Medical Center.  I explained that I would be here for her every step of the way. But I knew that none of that really mattered. She needs answers.childrens hospital

I emailed the amazing doctors who have treated my son and told them about this little boy. They called the mother within minutes and moved things around so he could be seen today. The nurses and doctors understood that this mother has to have answers or it’s going to impact her own health. I am anxiously awaiting a call or email from her.

Another irony of the day is this article that was released about LCH today. It looks like they have had some breakthroughs regarding treatment. That is super exciting!

I know it sounds crazy to say this; I feel like my family has been very lucky through all this. Yes, I would have liked answers sooner, of course it would be better if my son never dealt with this, I wish he never spent a summer in a wheel chair and missed two months of school, it makes me crazy that my son worries all the time that it’s coming back but still, we are lucky. I had the courage to advocate for my child. I had friends and family to support me and answer my late night calls. I had Children’s Hospital 15 minutes from my house. I didn’t have to pay to stay at the Ronald McDonald House and I had my network all around me. My son will have tests for a long time to come but I know we can get through this. As Robin on Good Morning America said the other day “You don’t know what strength is until strength is the only choice you have.”

joey joshIn honor of Rare Disease Day, and my son, I am asking you to please share this post with a friend(s). Awareness is everything!

When have you been forced to discover how strong you truly are? We love reading your comments!