Histio Hike Ohio 2014 – For a Cure

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

 

Should Dealers Be Responsible for Heroin-Related Deaths?

heroin needle

My husband Nick and I just had this discussion. Should someone who supplies another person with heroin who overdoses be charged and face prison time?

We lost Nicholas, our nephew, in August of 2013 to heroin (Read Nicholas’ story 72 Hours of Heroin here). He had been struggling with his addiction but had been clean for a few months. One night the temptation was too strong and he used, with the result being the end of his life. Nick and I weren’t married yet but living together so technically, Nicholas wasn’t my nephew yet but I truly enjoyed having him in my life. His death stunned us.

As we sat at the hospital praying and hoping he’d magically wake up, I went through his phone. The journalist and curious person in me had to know what happened. He was doing so good. He was staying clean. I had to know why. I had to know a timeline and I had to know who sold it to him. I was so angry with the person who sold it to him. I wanted that person to pay. I was able to piece together a timeline and figure out what had Nicholas so down that day. I was also able to figure out who sold the heroin to him… sort of. I had a name, but obviously a nickname. I also had a phone number. The deal had gone down via text message. We turned the phone into the police but for whatever reasons, the case went cold and they weren’t able to make an arrest.

I was angry. This guy killed our nephew. He gave him an illegal drug that is known to cause death A LOT.

I read yesterday that a dealer admitted to supplying a fatal dose of heroin to a Northern Kentucky man and is now facing 20 years to life in prison (Read Story Here). I know I would have jumped up and down for joy had this been Nicholas’ dealer. But when I first read the article, I had a battle between my head and my heart. If I owned a gun store, legally sold you a gun and you went home and shot yourself, I wouldn’t be charged nor should I. If I sold you a car and you chose to drive it off a bridge and died, I wouldn’t be charged. If I sold you cigarettes for 20 years and you died from lung cancer, I wouldn’t be charged.  If I legally sold you beer, you chose to drive, wrecked and killed someone else, I wouldn’t be charged. So why should the heroin dealer? In my heart, I immediately knew I wanted the dealer charged. But my head kept asking questions and comparing it to gun, car and beer salesman.

I told my husband that my head and my heart were having a battle. Although I think he was surprised at first, given all we have been through in the last year, but was also understanding. He said it wasn’t a struggle for him though. Nick said the difference is none of the other acts are illegal. As long as you follow the laws set in place, it’s not illegal to sell a car, a gun, cigarettes or alcohol. It’s illegal to sell heroin. Everyone knows that heroin can, and most likely will eventually, kill.  I am not denying that the user made a choice, a deadly choice but the dealer holds some responsibility as well. The dealer may not have held a gun to the user’s head or pushed the needle into their arm but the dealer provided the user with the deadly drug.

I want to know… what are your thoughts on the subject? Please be respectful of each others’ opinions.

 

 

 

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

 

Waiting for results

I’m sitting in a very small room right now with my son at Cincinnati Children’s Medical Hospital. It’s basically a large closet with a hospital bed, a shelf, a computer, monitor and owl stickers on the walls. Joey is lying in the hospital bed waiting for his Pet Scan. He’s been given pain medicine and other meds necessary for the scan. He looks so relaxed and peaceful as he watches Frozen on the portable DVD player. His eyes are barely open.

joey hospital

He’s not been this peaceful or pain-free in weeks. It brings tears to my eyes to see him like this, to see him at peace.

We are waiting for his Pet Scan. He has to have medicine in him for 45 minutes before the scan can begin. They will scan his entire body hoping not to find any new tumors. Hoping the Histio has not returned. He has pain in his left leg, hip and ankle. It could be that the Histio is eating his bones away again or that he is having another episode of unexplained pain. Although unexplained pain is frustrating, we are hoping for that. If that’s the case we will probably start physical therapy again.

If it is Histio…. we will kick it’s butt!

92 Days of Summer & Giveaways

raising2tweens:

Awesome Piece

Originally posted on Kenton County Public Library:

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92 Days of Summer! Yes, you read that right! The Kenton County Public Library runs Summer Reading Club for 92 days – June 1-August 31. Summer is typically very exciting in the beginning but kids tend to get bored about two weeks into June. Even adults find themselves looking for outdoor fun and rainy day activities. So the Kenton County Public Library has you covered with our list of activities and books for 92 Days of Summer. This is a long list so print it off to hang on the fridge, mark things on your calendar or check the post often.

We will also be giving away prizes EVERY SINGLE DAY of the 92 Days of Summer on our Facebook page so be sure to check it out everyday. Every day we will be giving away a Parenting in NKY Prize Pack (a Florence Mall carousel token, McDonalds ice…

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My Non-traditional, Superhero, Blended Family Wedding

There was nothing traditional about mine and Nick’s courtship so I knew I wouldn’t want a traditional wedding when the time came. We met at a costume dance. He was a zombie and I was Taylor Swift. He had blood all over him and bites out of his flesh. I had an ugly wig and pajamas on. He moved in with us after only five months. I hadn’t lived with anyone else since my divorce 10 years ago but I just knew it was right. He has three children ages 22, 19 and 18. I have two children ages 15 and 12.

The Ringmy ring final

We had talked about getting engaged and what type of ring I wanted quite a bit. My brother and sister-in-law make and sell jewelry (Bridewell Art) so we discussed ideas with them. I decided I wanted a non-traditional stone in the center so my brother custom made an aqua marine stone, the birthstone for March. That is Nick’s birthstone and the month Nick and I met.  It makes the ring even more special. He proposed on March 3, 2014, our one year anniversary date.

The Date

Nick’s daughter was leaving for the Coast Guard boot camp just a few days after we were engaged. We were told she would have five days leave before she headed to her assignment. Nick’s son Joel would be leaving for the National Guard in late July. So we decided we would get married during Jordan’s leave on Sunday, May 4, 2014 so all the kids could be at the wedding.  That meant I had eight weeks to plan a wedding.

We  decided it would be just immediate family and a couple very close friends in Nick’s parents’ backyard.  We wanted a very fun and laid back atmosphere. We started creating this atmosphere by picking a fun theme – superheroes.

The Invitation

Our superhero theme was introduced in the invitations. We wanted to include the kids as much as possible so we put my children’s names where the brides’ parents names are usually listed and his children’s names where the grooms parents are usually listed.

invitations

Superman Wedding Invitation

The Attire

I asked Andi and Jordan, our two daughters, to be my maids of honor. I told the girls to pick dresses that fit their style and that they would wear again. I wasn’t worried about matching. I didn’t want a traditional wedding gown so after trying on about 50 dresses, I found one that but made me smile with no ifs or buts. I found this awesome vendor on Etsy who custom made my shoes for only $35, including shipping. I didn’t tell anyone about the shoes since I wanted it to be a surprise, even for Nick.shoe 2

the girls

Andi, the bride, Jordan

 

 

 

 

 

Women's Superman Shoes

Women’s Superman Shoes

 

 

 

 

 

 

 

 

The guys went even more casual. Nick and our three best men – our sons Josh, Joel and Joey – went with khaki pants and button down shirts.

 

 

 

groom and best men

The groom and the best men (Josh, Joey, Joel)

To stick with the theme, I had to throw a few surprises into the wardrobe and get a few awesome photos. I bought each of the guys their favorite superhero T-shirt, Jordan a Wonder Woman bracelet and Andi Cat Woman ears. This made for a fun photo shoot.

Best Men and Groom

Superhero Wedding Wardrobe

goof balls

Iron Man, Wonder Woman, Batman, Superman and Cat Woman save the bride!

 

The Jewelry

My brother and sister-in-law, with Bridewell Art, made Andi and Jordan’s jewelry for the wedding. It is gorgeous and meant a lot more to us than a piece from a store.

girls earrings

 

Two days before the wedding, my mother gave me a beautiful necklace that my father had given her when I was born. I wore that as my something old. My best friend Jessica let me borrow a silver bracelet. My dress was new and my engagement ring was my something blue.

The Ceremony

Since we weren’t having friends in the wedding party, we decided to ask my best friend, who Nick is also good friends with, to oversee the wedding. Jessica was able to get certified online for only $32. This made the ceremony so much more personal.

We had very simple bouquets made from Fort Thomas Florist, a local florist. She wrapped them in Superman ribbon that I purchased from SweetRibbonAddiction on etsy.

wedding  2

maids of honor Maids of Honor

wedding party

Best Friend Officiates the Wedding



 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Writing our own vows also made the ceremony much more personal and sweet. Nick is an amazing poet (read his poetry here), which was shown in his vows. I promised to inspire him, love him and to never disrespect the Beatles. Anyone who knows Nick, knows that the Beatles part is very important.

Reading Our Own Vows

Reading Our Own Vows

Jessica also helped us with a very special part of the ceremony. We wanted to symbolize the unification of our two families in a special way. Nick and I purchased a small birch tree, which symbolizes new beginnings, and placed it on the table during the ceremony. We had little ornaments made with our names and our children’s names. On one branch hung the ornaments for Nick, Josh, Jordan and Joel. On another branch hung ornaments for me, Andi and Joey. After we recited the vowels Nick and I wrote, we recognized our blended family. Each one of us removed our ornaments from the separate branches and then hung them all on one branch together showing the start of our new family tree. We are planting the tree in our backyard and watch our family grow.

Our Family Merging to One Branch of the Tree

Our Family Merging to One Branch of the Tree

tree

Signifying Our Blended Family

 

 

Other Special Touches

Nick’s nephew Nicholas passed away last August at 30-years-old. After his death, the family started something called Pennies for Pickle based on Nicholas’ nickname Pickle and the thought that our loved ones who have passed leave pennies in our path to say hello. We had the florist fill a vase with pennies and red Gerber Daisies, which is one of my favorite flowers.

Penny Vase to Remember a Loved One

Penny Vase to Remember a Loved One

 

Instead of having a guest sign in book, we decided to ask people to sign the corks from the wine bottles and then save the corks in a wine cork cage. This is something that will always be on display and not packed away in the basement.

corks

wine corks

Guests Signing Wine Corks Instead of a Guest Book

 

 

 

 

 

 

 

 

 

 

 

 

The Reception 

Nick and I wanted to keep it simple and fun so we opted for a wine and dessert reception. My new brother-in-law Eric made magnificent cheesecake and we had cupcakes and cookies from Affordable Wedding Creations in Covington, Kentucky. We did carry the superhero theme over into the cupcakes.

cake

Raspberry Cheesecake

yum

Wedding Superhero Cupcakes

superman cupcakes

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The kids really enjoyed the dessert bar.

josey cupcake

 

 

It was the perfect wedding for us. We were able to show our personality without overdoing the superhero theme. We made it personal by having the wedding and reception in Nick’s parents backyard with a small guest list and getting married by my best friend. We were able to recognize a loved one we lost over the last year and find the perfect way to recognize our blended family. We weren’t stressed over the expenses or logistics. It was the fun, laid back setting with lots of personal touches that we asked for.

Nick & Gina

5/04/2014

The Groom and Daughter

The Groom and Daughter

mother of the bride

Mother and Bride

buds

Friends with the Bride

the cake stegner obys 2 boysstegner boys GIRLS

 

Please check out Raising2tweens on Facebook and follow me on Twitter at gina5620.

 

My Histio Warrior Celebrates 2 Years

Joey had a hip bone graft and biopsy two years ago today followed by months of being in a wheelchair, using a walker, using crutches and more than a year of physical therapy. Today, he rode his bike a mile to school. My 12-year-old son Joey is a Histio warrior. On April, 23, 2012, he was diagnosed with Langerhans Cell Histiocytosis. On April 25, 2012, he had major surgery.

joey bike

Although Joey deals with unexplained chronic pain at times, he has not relapsed. Histio is similar to cancer and if it attacks again, he will need chemotherapy. We pray everyday that he will continue to be in remission. At this point, other than checking in with the doctors at Cincinnati Children’s Hospital every few months, Joey could put this disease behind him unless it flares again. But he won’t do that. He is a true warrior. He is fighting for his friends, some he has met and others who he just knows of, who have Histio.

histio image

This picture was borrowed from another Histio warrior.

As I have said before, there is no known cause or cure for this disease. And since it’s considered rare, there is very little funding for research. Histio experts can be found at Cincinnati Children’s Hospital and a Children’s Hospital in Texas. Dr. McClain from Texas came out with a new finding recently that does give Histio families a little more hope because the doctors are starting to understand the disease a little more. You can read that here.

Joey wants to find a cure for himself and his friends. He educates people about his disease whenever he can, he talks to the media, does things for the Histio Association and participates in fundraisers. You can celebrate Joey’s two year anniversary by donating to the Histio Association in his name – Joey Holt – or by donating to Cincinnati Children’s Hospital Medical Center for Histio research in honor of Joey Holt (be sure to write that in the comments).

Our lives changed forever the day Joey was diagnosed and even more so on April 25, 2012 after surgery. But this challenged that was thrown at us has made us appreciate life much more over the last two years. We will find a cure for our friends.

be thankful