Ringling Brothers presents Circus Xtreme

Ringling Brothers Barnum and Bailey  present Circus Extreme  March 3-6.

RBBB-145-1200x628-Photo-BMXFlip

Tickets can be purchased at http://m.ticketmaster.com/US-Bank-Arena-tickets-Cincinnati/venue/180631.

Attending the circus at US Bank Arena has become a family tradition. My 14 year old son is so in love with the circus that he has doing Circus Mojo and someday hopes to be a professional circus performer.

RBBB-145-1200x628-Photo-TabaTigerJump

This is the last year you can see the elephants perform so be sure to buy your tickets today.

 

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

 

DIY: Decorate for Fall on a Budget

I don’t often write about crafting because to be honest, I’m not very crafty. But once in a while, my job requires me to step out of my comfort zone and make a few things. Making fall lanterns for a Fox 19 segment gave me the crafting bug so I made a few things for my house and a friend’s. I chose very simple and inexpensive crafts.

Fall frames

Fall Picture Frames

Fall Picture Frames Supplies:

  • Four picture frames ($4 – Dollar Tree)
  • Card stock or scrapbook paper ($3 – Michael’s)
  • Chipboard letters ($5 – Michael’s)
  • Craft Glue ($3 – any store)

Fall Picture Frame Instructions:

  • Cut the card stock or scrapbook paper to fit your frame
  • Glue the chipboard letters to the paper
  • Frame the paper and letters
Wine Bottle Vase

Wine Bottle Vase

Wine Bottle Vase Supplies:

  • Empty wine bottle (Free)
  • Artificial leaves, berries, acorns, pumpkins ($4 – Dollar Tree)
  • Twine, ribbon or raffia ($1 – Dollar Tree)
  • Optional: Chalk board sticker ($1 – Michael’s)

Wine Bottle Vase Instructions:

  • Place artificial plants in wine bottle
  • Tie twine, ribbon or raffia around plants stem at top of bottle
  • Place sticker on bottle and write Fall, your last name or other word of your choice
Fall Lantern

Fall Lantern

Fall Lantern Supplies:

  • Mason jar, vase or glass bowl ($1 – Dollar Tree)
  • Glue dots or craft glue ($3 – any craft store or Target)
  • Battery operated candles (2 for $1 – Dollar Tree)
  • Bag of artificial leaves ($1 – Dollar Tree)
  • Optional: Twine, raffia or ribbon ($1 – Dollar Tree)

Fall Lantern Instructions:

  • Glue the artificial leaves inside of the jar or vase (Tip: The glue dots make this very simple)
  • Place a battery operated candle inside
  • Tie raffia, twine or a ribbon around the jar
Fall Lantern, Ghost Jar, Candle Platter

Fall Lantern, Ghost Jar, Candle Platter

Candle Platter Supplies:

  • Fall scented pillar candle ($2.50 – Michael’s)
  • Fall colored tealight candles ($5 for box of six – Michael’s)
  • Gold or fall colored tray ($3 – Michael’s)
  • Bag of rocks ($1 – Dollar Tree)

Candle Platter Instructions:

  • Arrange pillar candle, tealight candles and rocks on tray

Ghost Jar Supplies:

  • Mason jar ($1 – Dollar Tree)
  • Ghost Peeps ($2 – Walgreen’s)
  • Candy Corn ($2 – Walgreen’s)
  • Optional: Ribbon ($1 – Dollar Tree)

Ghost Jar Instructions:

  • Fill the jar about 1/4 of the way with Candy Corn
  • Place the Peeps facing out inside the jar
  • Fill the jar the rest of the way with Candy Corn
  • Tie a ribbon around the jar

I was able to make three Fall Lanterns, a Candle Platter, a Ghost Jar, a Wine Bottle Vase and Fall Picture Frames for under $40 since some of the supplies overlapped. I also have extra supplies to make more fun decorations.

What is your favorite fall decoration?

Note: I found most of these ideas online but gave them my own twist.

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)

Spring Break Getaway with Teens

The week before spring break I asked Andi, 15, and Joey, 13, want they wanted to do for spring break. I gave them at least two dozen ideas of places within a few hours of home. CoSi Museum in Columbus? The Airforce Museum in Dayton? The Science Museum in Louisville? Hiking in Hocking Hills? The Columbus Zoo? The Kentucky Horse Park? Shaker Village? Explore Yellow Springs, Ohio? Play in the waterfalls at Clifty Falls? Paintball? Ziplining?

You would think they’d be excited, right? Nope. They both looked at me like I was crazy. They made all kinds of jokes about just sleeping their spring break away. Honestly, my feelings were kind of hurt that they weren’t excited about going out of town with me. I decided they were going whether they wanted to or not and I would pick the spot. My 19-year-old step-son Joel announcing he was going did help the other two get on board. They love spending time with their big brother.

So I decided we were going to Cave City, about 3 hours south west of Northern Kentucky.After doing some research, I booked a cave tour, rappel and zipline at Hidden River Cave. After that we stopped at the Kentucky Action Park to go horseback riding. We went back to The Action Park the next morning to enjoy the ski lift, another cave tour, an alpine slide, a rock climbing wall, go-karts and more.

I could go on and on about how much fun we had but I think I’ll just let our pictures tell the story.

This slideshow requires JavaScript.

Not only did we have a lot of fun, we truly enjoyed being together. It was our first real trip with Joel, that didn’t involve a Military graduation. I enjoyed watching the three kids interact, talk, laugh, tell jokes and just be silly. One of the best laughs was when Joey used Andi’s prescription face cream to brush his teeth and announced “this toothpaste tastes like crap!” It really was an awesome time!

Money Saving Tips:

We saved more than half with a Groupon for the activities at Hidden River Cave. Save money at The Adventure Park by buying a day pass for $25 per person. This allows everyone to enjoy everything at the park, except for horseback riding and ziplining, all day long. Horseback riding was actually really affordable, only costing $18 per person for an hour. If you are going to zipline at The Action Park, get a couple buddies together and buy three zips for $100. I was extremely impressed with The Action Park because they offered free day passes, free horseback riding and free ziplining to active military. We were able to save a lot of money since Joel is in the National Guard.

Have you been to Cave City? What was your favorite adventure?

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. 🙂

A True Histio Warrior

Super Joey

Super Joey

My head is swimming right now. Joey had a follow up with oncology today. He is two years free of active disease. That means there has been no evidence of Langerhans Cell Histiocytosis for 24 months! Dr. Palumbo, Joey’s oncologist, considers Joey Histio-free and no longer a risk for relapse! Now with that said there is still a small chance but it’s VERY small. Dr. Palumbo said we no longer have to follow up with him unless we need him. Wohoo!!

So you would think I would be partying and overjoyed right now but I’m actually experiencing a mixture of feelings. Joey went to this appointment in a wheelchair. He is having horrible leg pain. The same type of leg pain that he has experienced for two years since his biopsy and bone graft. Dr. Kenneth McClain, the world’s leading LCH expert, told me via email that he sees this type of unexplained pain in patients who have had bone LCH often. Unfortunately he doesn’t know why or how to fix it although he said it’s something he’s working on.

Dr. Palumbo, our social worker Molly and Dr. Palumbo’s assistant Michelle asked Joey’s dad (Troy) and I to go to a conference room while Joey stayed behind. During our walk to the conference room I started thinking they were going to ask me if he was faking. I even whispered to Troy that they better not state that. I was ready to go off if they even brought up the idea. That’s not why we were called in though. In fact, they repeatedly stated they knew he wasn’t faking.

Dr. Palumbo assured us that there is no active disease and he is not worried about it attacking again. He did say however that he was concerned about Joey’s pain. Joey has post traumatic stress disorder. Dr. Palumbo suggested that maybe some of the pain is stress and anxiety related. His dad and I completely agree with that. None of us believe it is the only thing causing the pain but it is definitely a contributing factor.

The oncology team was happy to hear that we already have Joey seeing a psychologist at Cincinnati Children’s and referrals for a psychologist who deals with pain and biofeedback and a psychiatrist who works with kids who deal with anxiety and have been through a lot.

Dr. Palumbo did bring up something that I have thought about and talked with Joey’s psychologist about a thousand times… Joey and I have been very active in the Histio community with raising awareness and money. He asked if it would be easier on Joey if we weren’t so involved. I knew what he was going to ask before he finished the question because I have thought about it so many times. I have discussed it with Joey. I explained to Dr. Palumbo that Joey says he has to be a spokesperson for these kids who are so sick that they can’t speak for themselves. I also told him that the psychologist feels this is to important to Joey to give up. But I completely understand him asking questions. He also asked if Joey understood that he didn’t have the type of LCH that is fatal. Joey absolutely knows that. However, Joey often has dreams that the LCH is back or that one of his friends with Histio takes a turn for the worst.

Once we went back to the examination room, Dr. Palumbo told Joey that I shared his dream with him. “Joey, I need you to know that you are not going to die and I am confident the LCH is no coming back,” Dr. Palumbo said to Joey. I think Joey needed to hear that. He needed to know that his oncologist believes he is completely fine. Dr. Palumbo also told him he was concerned about his anxiety and thought it was contributing to the pain. He told Joey he was so confident that the Histio wasn’t coming back that he didn’t need to follow up with oncology any more. Joey seemed a little relieved.

He still has to follow up with orthopedics so they can check his bone graft. He will continue counseling, massage therapy and physical therapy.

Although I’m relieved the disease is inactive, I worry about his worry and leg pain. I hope everyday that I am making the right decisions and not contributing to his anxiety. So now we concentrate on letting go of the worry (for both of us) and getting him pain-free again.