Learning to Say Yes

People talk about learning to say no all the time. You don’t have to volunteer for every school fundraiser, be on every work committee or give money to every walkathon. It can be really hard to say no, which is something I had to learn to do. But it’s even harder to say yes. I’m not talking about saying yes to running the school bake sale or hosting a benefit. I’m talking about saying yes to help.

yes

Most of us have had a crisis in our lives, whether it is a death in the family, a car accident or an illness, and have heard the question “what can I do?” from our friends and family. They might even be more direct by offering meals, to go to the store for you, be a taxi for your kids or even clean your house. And we often say “no, that’s okay” or “I’ll be alright.” But you know what, it’s not okay and it’s not alright. There are times we need to just say yes.

My son Joey was diagnosed with a rare cancer called Langerhans Histiocytosis when he was 10. He had to undergo major surgery, spend months in a wheelchair and receive steroid treatment. Dozens of people offered to help and I often found myself saying that we were okay. But the fact is, we weren’t. Luckily there were people who insisted on helping anyway. They brought food, games to keep Joey entertained, took my daughter places and helped however they could.

histio warriors

Histio Warriors Supporting Each Other

In September of 2015, my step-son was in a terrible car accident and spent three months in the hospital. He was in critical condition for the first three weeks, two hours from home. My husband and I stayed in the Ronald McDonald House while my two teenage children were two hours north trying to maintain some type of normal life.

helping hands

This is when I learned to say yes. I knew we needed help and luckily we have tons of friends and family who were willing. People took care of our kids, brought them meals, sent us meals, made sure my kids got to school and my daughter got to work, and did absolutely anything we asked of them. People who we didn’t even know very well helped our family. It was truly amazing.

It was hard to accept the help at first but we quickly realized that we had to. We also learned that people weren’t making empty offers. They truly wanted to help us and they didn’t expect anything in return.

Whether you have a child in the hospital, a parent who passed away, or surgery for yourself, say yes when friends and family offer to help. And when they ask “what can I do?” be honest. Tell them you need someone to go to the grocery, do your laundry or make a meal. Learn to say yes.

Advertisements

Running off with the Circus

Joey Holt, a 14-year-old Fort Thomas resident who is an 8th grader at Highlands Middle School, is running off to Germany with the circus this summer. My son Joey really is an extraordinary kid who has defeated a rare disease called Langerhans Cell Histiocytosis. The cancer attacked his hip bone causing him to need a bone graft and making doctors wonder if he would ever walk again. After months in a wheelchair, years of physical and occupational therapy and counseling for Post-Traumatic Stress Disorder, not only can Joey walk, he can perform in a German Wheel and do tricks on a cable wheel.

joey german wheel2

Joey met Paul Miller, owner of Circus Mojo, and some of his team at Cincinnati Children’s Hospital while waiting to see doctors in 2010. Joey enjoyed their entertainment so much that he asked me to schedule his appointments for when they would be in the waiting room. They taught him to balance a feather on his hand, spin plates and a little bit of juggling. The next year was quite a battle for Joey. He was in a wheelchair, doing therapy, dealing with nerve pain, in and out of the hospital as an inpatient all while trying to go to school. He was a fighter though.

joy wheelchair

joey walker

joey hospital

The next summer, 2011, I won a week of camp to Circus Mojo from a local blogger. Joey was ready to go learn more tricks but was using a wheelchair and crutches again due to pain. Paul said they would work around it and to send him to camp anyway. Joey was so determined to be able to do the silks, German wheel, cable wheel and everything else the circus had to offer that by the end of the week, Paul was balancing the wheelchair on his chin and Joey balanced the crutches in his hand.

joey balance

Joey fell in love with circus that summer and has been working with Mojo ever since. He trains every Saturday, performs for the public every chance he gets, attends summer camps and practices constantly at home.  His hard work has paid off. Circus Mojo is taking Joey to Germany this summer to train with Circus Pimparello for a few weeks. His trip is estimated to cost approximately $2000. Joey is for hire to perform at parties, teach kids circus tricks, babysit, take care of pets and do other odd jobs. All money earned will go toward his trip.

joey flyer

You can also help give Joey a chance of a life time by sponsoring a portion of his trip with a tax deductible donation. Donations can be made to Circus Mojo’s Foundation, The Social Circus Fund, at https://socialcircus.wordpress.com. Just click on Donate Here. Donations can also be mailed to the Social Circus Foundation, 326 Elm Street, Ludlow, Ky., 41016. PLEASE write in the memo or comments that the donation is for JOEY HOLT’S Germany Trip.  Please contact Gina (gina5620@gmail.com) or Nick Stegner (nstegner68@gmail.com) with questions or to hire Joey.

Note: Learn more about Joey at http://local12.com/news/local/circus-helps-teen-recover-from-rare-disease

Prepare for the Big Bumps in Life

be thankful

I was walking out of select soccer registration on September 27 when I noticed my 16-year-old daughter Andi sent me a text to call her immediately. I was trying to dial as another text came through from my husband Nick telling me the same thing. I immediately felt sick to my stomach. I knew something had to be seriously wrong. In the five seconds it took me to dial, I wondered if something had happened to my pregnant stepdaughter, if a family member had passed or something had happened to one of my stepsons. Both of my bio children were safe at home. Nick answered the phone with a shaky voice. “Joel has been in a car accident in Elizabeth Town and has been air cared to a Louisville Hospital. I’m not sure if he’s okay, I’m not even sure where he is.”

My heart sunk. Joel was 19 at the time and just started his first year at Eastern Kentucky University. I thought he was spending the weekend resting in his dorm so my first thought was they were wrong. They had the wrong kid. But then it sunk in. He was on his way back from visiting his girlfriend at Murray – a five hour drive. I don’t even really remember driving home from soccer registration. I just had to get to my husband.

I quickly packed a few basics and we jumped in the truck with his brother Chris, picked up my step-daughter and started the two hour drive to Louisville. It was a long drive. I remember thinking “don’t throw up, just don’t throw up.”

That night was the beginning of a three month stay in hospitals. I watched my step-son fight for his life and win. Doctors were baffled on how he survived but he did. He is still in recovery but is going to be as good as new. Family support, prayer, friends, amazing health care providers and his determination made him survive.

This wasn’t my first experience with hospitals and praying that a child can overcome the odds. My now 14-year-old son Joey was diagnosed with Langerhans Cell Histiocytosis almost four years ago. He had to undergo a bone graft of the hip, spend months in a wheelchair, years in physical therapy and lots of a counseling for PTSD. He is doing amazing now (I have to give partial credit to Circus Mojo in Ludlow, Ky, for that. They have kept Joey physically fit and give him something to look forward to).

joey german

Joey’s diagnose changed me for the better. I became much less of a worrier and my anxiety reduced tremendously. Although this is the opposite of what most people expect, it really was a natural reaction. It took that diagnosis for me to realize that there is no reason to worry over every little thing and life and really the only thing that matters is our health.  That didn’t mean that I didn’t lock myself in the bathroom and cry about Joey’s condition sometimes. Of course I did. This is my son and I wanted him to be okay.

I shed many tears over the last 3-1/2 months worried about my step-son because that is normal. But I have also regained perspective. Life is valuable and it can be taken from you at any moment. It’s important to surround yourself by positive people who build you up and don’t focus on petty bumps in life because the positive people in your life are the ones who will help you get through the big bumps.

 

optimistic

 

Don’t Feel Sorry For Us; We’re Pretty Lucky

Between Joey having Langerhans Cell Histiocytosis, residual pain from the surgery and his PTSD, as well as Andi’s migraines, along with a recent concussion, we often find ourselves visiting the doctor and the hospital. Friends and family constantly make comments to me like “if it wasn’t for bad luck, you guys would have no luck at all,” “life is so unfair,” “you guys can’t catch a break,” “your family has had it rough” and “you must fund your doctor’s vacations.” The thing is though, well other than the last one, I don’t feel like any of that is true.

My son was diagnosed with a life-threatening cancer at 10-years-old. We were told he may never walk again. At 13, he has beaten LCH, runs, walks and rides a bike like a normal kid and even performs in Circus Mojo doing a variety of acts that use his legs. He didn’t die. He can walk. He is funny and caring. I think that is pretty lucky.

joy wheelchair

After surgery in 2012

joey german

2014

 

Andi has suffered from migraines since she was 9 with no real explanation. She will be 16 this month. That sucks but they aren’t caused by epilepsy, a tumor or a serious disease. They are most likely hormonal and will eventually be under control. That is lucky.

Andi has suffered from a concussion since April 19 and has had a heck of a time with it. She was hospitalized for two and a half days, she can only attend half days at school, she is nauseous all the time and definitely doesn’t feel herself. A girl, who was less than five feet from Andi, kicked the soccer ball so hard that when it hit Andi in the face, it knocked her to the ground. She didn’t lose consciousnesses. The pediatrician told us the only thing that would make this concussion worse is if she was knocked unconsciousness. I think the fact that she didn’t is pretty lucky. When neurology admitted her at Cincinnati Children’s Hospital, they told us she could be there two to six days. She wasn’t even there for three full days. That was lucky.

my cutie kids

my cutie kids

She is still dealing with the concussion. It is hard on our family. She can only go to school half days, which requires a lot of juggling. However, we have awesome friends and family who are helping us with that. We are so lucky to have those people in our lives.

We are also lucky to have Cincinnati Children’s Hospital, one of the number one hospitals in the country, 15 minutes from our home. We are lucky to have one of the top two LCH doctors in the country 15 minutes from our home. We are lucky to have one of the best children’s neurology teams in the country 15 minutes from our home. Really, what more could we ask for? Well, maybe for better health insurance or someone to pay our medical bills. Ha!

We’re good. Don’t feel sorry for us. We are pretty lucky!

family shot (2)

A Familiar Place

family shot (2)What was once a very scary and confusing place is now a familiar and comforting place for me and my family. “I know this place like the back of my hand,” my 15-year-old daughter Andi said after telling me where the closest water fountain was at Cincinnati Children’s Hospital Medical Center main campus. I giggled and reflected on the last three years.

Three years ago, we could barely find the ER when needed to or the neurology department on A8, which we had just been introduced to a few years earlier. We would often find ourselves lost in the building if we had to park in a different part of the garage or use a different entrance. But not any more.

Almost three years ago, my son Joey who is now 13, was diagnosed with Langerhans Cell Histiocytosis, a rare disease that doctors argue over whether or not it’s cancer. His white blood cells ate his hip bone causing him to need a bone graft, months in a wheel chair, steroid treatment, months with a walker and then crutches and years of physical therapy (read stories posted HERE for information about LCH and Joey’s battle).

In those three years we have gone from barely being able to find the ER when needed and neurology for Andi’s migraines to knowing where the cool art is in the building, where to find a water fountain, the best items on the lunch menu, where oncology, orthopedics, physical therapy, blood draw, radiology, the emergency room, behavioral medicine, a quiet outside area and so much more are located. We can give directions to those new to the hospital. We are no longer shocked by some of the things we see like children with missing limbs, those in body casts or little ones with burned bodies. We are still saddened but no longer shocked.

We now have favorite nurses in several departments. We know staff members by name, and they know us. We know which techs are better at drawing blood and giving shots. We know which clinics have the best coffee and hot chocolate. We even know most of the valets by name because when you have a kid in a wheelchair or pain, you let someone else park the car. We know how to get massages for the patient and mom, how to get discounted meals and where to get a breath of fresh air without worrying about the neighboring community. We know what days we can find Circus Mojo performing and in which clinics.

Cincinnati Children’s Hospital is so big and complex that it used to be a scary place to my family. Now oddly enough, we find comfort being there. We seek out our favorite art piece, a framed quilt (read about it), when we need a good distraction. We go outside near Alvin and the Chipmunks when we need fresh air. We bring our favorite nurses cookies from time to time and stop by to see our favorite doctors or staff members just to say hi between appointments.

I think the reason it brings so much comfort is because before Joey was diagnosed and in pain, we were lost and frustrated. We needed answers and it was Dr. Neil Johnson at Cincinnati Children’s who gave us those answers and put Joey on the road to recovery. Dr. Johnson is a hero in our eyes, along with all the other doctors, nurses and staff who helped us along the way. The doctors at Children’s have also helped Andi with her migraines. Everyone there is so kind and reassuring.

We’ve learned things aren’t always as scary as they seem and sometimes the places that seem the scariest might just be where you can get the most comfort.

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.

##

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. 🙂