Our First College Visit

With our daughter finishing her junior year, it’s time to look into colleges. Although Andi doesn’t plan to attend Illinois State University, we scheduled our first visit for ISU in Normal, Illinois. We chose this because our 14-year-old son Joey hopes to attend there for its well known business program and the circus, as an extracurricular activity, they offer. We planned the trip around Gamma Phi Circus’ spring show. We also thought visiting a school she didn’t have her heart on would give Andi an idea of what to look for in other colleges.

We weren’t quite sure where to go when we arrived on campus so we asked a student in the parking lot. Instead of just trying to tell us where to go, she walked us to the building even though it was out of her way. That was definitely a great first impression. The visit started with information about the campus, including tuition contest, types of extracurricular activities, are information and other specifics to the University.

andi and joey

The campus was absolutely gorgeous and very active with students playing Frisbee, riding bikes and walking around campus.

It is common for student groups to leave to promote events by writing on the sidewalks in chalk.

circus chalk

After touring the campus, we met with members of Gamma Phi Circus, the oldest collegiate circus program in the United States. This an extracurricular activity but does require students to be committed by training several times a week. Joey currently trains three days a week with Circus Mojo in Ludlow, Ky. so he will be ready for this commitment. GPC starts training the in the fall for its spring show, which we were able to see.

20160415_213309circus 5circus 4circus 1

My kids, along with a couple other kids from Circus Mojo, were able to meet with the performers after. They were incredible nice to the kids, letting them ask tons of questions about the Gamma Phi Circus and college life.

circus 3

I have to say that our first college visit was a success.

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.

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