Fighting Through the Pain

Laying in bed last night I kept hearing a noise in the distance. At first I thought was it a cat outside? But then I realized… it was crying… it was Joey crying.  He had been dealing with pain on and off for weeks now but it had become unbearable last night.

Joey has missed about six days of school since mid-August due to leg and hip pain. He ends up in the nurses office almost daily, sometimes a few times a day, to stretch and try to deal with the pain. It often becomes too much and he comes home early from school.joy wheelchair

This is a side effect from Langerhans Cell Histiocytosis (Histio or LCH). LCH has recently been reclassified as a cancer instead of a cancer-like disease. Joey’s white blood cells attacked his hip bone eating it away. After a month or more of excruciating pain he was diagnosed, had major surgery, spent a lot of time in Cincinnati Children’s Medical Hospital, spent months in a wheel chair and years in physical therapy. The Histio is inactive at this time but the pain isn’t. In fact, it has become more and more frequent. The unexplained pains can last an hour, days or weeks. It prevents him from being able to do normal kid things

His sis gives him a lift

His sis gives him a lift

We have tried prescription pain meds, over the counter pain meds, yoga, acupuncture, Reiki, vitamins, herbs, a special diet, massage, chiropractor, heat, ice, a tens unit and lots of physical therapy. Medicine doesn’t seem to help at all. The multi vitamin, protien shake and Turmeric definitely doesn’t hurt him so he continues to take it. Reiki, massage, acupuncture, PT, heat and the tens unit give temporary relief. Temporary relief is better than no relief so we continue to do these things no matter the cost or sacrifice.

I spoke to the lead LCH expert via email recently. Dr. McClain told me that the unexplained pain seems to be common in those with bone LCH and he hopes to some day figure out why and how to get rid of this horrible side effect. We can only hope and pray that he or another doctor figures it out. But until then, we continue to try anything we can think of.  And when Joey isn’t looking, I break down in tears because it’s not fair that my almost 13-year-old boy has to live with chronic pain.

 

Hot tub therapy

Hot tub therapy

 

 

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.

 

 

 

92 Days of Summer & Giveaways

Awesome Piece

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.

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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

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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.

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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.

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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

8 Ways to Get Along with your ex

divorceI have been divorced for more than a decade but converse with my ex-husband Troy several times a week since we have two children together. Our co-parenting relationship isn’t perfect but we do manage to make things work pretty well. We attend our children’s activities and sit together, go to team parties and even have meals together when an activity calls for it. People often ask me what our secret is. I’m not sure we have a specific secret but I’m willing to share what I do know.

1. Remember that your ex is either the mother or father of your child. This sounds obvious but so many people tend to forget this. No matter how upset I get with my ex, my children love him and he is an important part of their lives. Respecting that is important.

2. The way I treat my ex-husband teaches my kids how to treat others. I want my children to treat others with respect and learn to work out their differences. I can’t expect them to learn that if I’m constantly nasty to their dad.

3.  Leave it in the courtroom or at mediation. There were times Troy and I would be in mediation screaming at each other or fighting tooth and nail over something important to us but we always left it there. We agree that fighting or discussing issues in front of the kids is off-limits.

4. Respect each other’s significant others. Many exes find entertainment in making fun of their ex’s significant other behind their back or by even being mean to them. I honestly have never understood why anyone would do this. This is another opportunity to teach your children how to treat others, as well as show them you can be the bigger person. The only thing I am ever concerned with regarding his girlfriend is how she treats my children. I am always very polite to his girlfriend and make a point to talk to her so she doesn’t feel uncomfortable around me. I also expect her to show me respect.

5. Keep each other informed. Troy and I make a point to tell each other things going on with the kids whether it’s about their grades, concerns, soccer practice, etc. That way we are both up to date on the important issues and there is no confusion.

6. Present a united front. If your ex reprimands the kids be sure to follow through with the punishment. You would want him to do the same for you. It also sends a message to the kids that they can pull one over on either of you.

7. Don’t make your child the messenger… no matter how old they are. Your child does not want to be put in that situation and it’s likely to just tick off your ex. It’s much better for everyone if you just communicate with each other.

8. Don’t let your ex live rent-free in your head. I don’t allow myself to dwell or worry about things my ex has said or done. If I did, I would be bitter and it would come out in conversations between us causing us to argue. We got divorced for a reason… no need to let anything bother me now.

I will admit we didn’t follow these eight steps the first year and it made for a very stressful time in our lives. We could barely look at each other without arguing and that wasn’t good for anyone, especially the kids. I quickly figured out that we needed to change our relationship.

You don’t have to be best friends with your ex or even like them. Feel free to vent when you are out with your friends but don’t let it monopolize your night out. You just have to show them respect for the benefit of your children. And if you follow these eight steps, you will hopefully get along and make life a little less stressful for everyone involved.

Do you find any of these tips helful? Do you have any tips to add?

Team Super Joey in the Media

cyclones3My amazing son Joey has been in the media a lot lately so I want to have one spot where you can find links to his stories. This will be the spot. I will update this post as needed.

Joey’s goal is to raise awareness for Histio, and hopefully someday find a cure for his disease.

Histio Survivor Prepares for Fundraising Event, Community Press, July 12, 2013
Enjoying the Little Things and Making Memories, Looking4ward2tomorrow, Nov. 15, 2013

Fort Thomas Boy Fights Rare Disease With a Strong Voice – WCPO Digital, Feb., 2014

Teen is Survivor of Bone-Destroying Disease – Community Press, Feb. 25, 2014
Histio Awareness Video – Produced by Cathy Ross, Starring Joey Holt, Requested by Histio Association, 2014
Rare Disease Day Proclamation, Fort Thomas Matters, Feb., 18 2014
Team Super Joey Fights Histio, Rare Disease Day, Feb., 2014
Joey Advocates for Histio & Rare Disease Day, Fox 19 Morning News, Feb. 28, 2014
Joey is Five in a Million, Cincinnati Childrens Hospital Blog, Feb. 28, 2014
Follow Team Super Joey on Twitter @gina5620 #teamsuperjoey
Follow Team Super Joey on Facebook at Raising2tweens
Thanks to everyone who has shown their support!
cyclones2 cayton family cyclones rare disease hope waiting for trainTeam Super Joey
My Histio Family

joey super herosuper joeyHistio Warriors and siblingsmy histio hike 2

 

How Life is Like The Walking Dead

Beth is only 16 or 17 on The Walking Dead but she is wise beyond her years. Although she might be royally messed up emotionally and mentally at this point, she has quotes in the show that hit home whether you are in the middle of a zombie apocalypse, raising children, taking care of ailing parents or dealing with everyday work and life issues.

Beth-Greene1

In the first half of season 4 several members of the prison group become sick and are quarantined. Beth’s father Hershel goes into the quarantined area to help the ill. Beth’s sister Maggie asks her if she knows where their dad is. Beth, who is in charge of watching all the kids, says “We don’t get to be upset. We all have our jobs to do.” She makes statements along these same lines throughout the season.

Funny enough, this quote went through my mind a lot over the last two weeks. My mother has been very ill and in the hospital for nearly two weeks. I have an older brother, younger brother, two sister-in-laws, my dad, my kids and two nephews and two nieces. We are lucky to have a close-knit family.

I realized through the last two weeks that we do all have our jobs to do when a crisis arrives in the family. My job is to take care of things – organizer, fact gatherer, caregiver. I questioned the doctor and nurses often making sure my mom had the care she needed. I also assessed what needed to be done to prepare my mom’s house for her return. We realized that my parents’ dogs would have to find a new home before she came home from the hospital so I found a rescue to take the mastiffs.

My younger brother’s job in the family is to get things done. Once the dogs were removed, we had to remove all dog hair from the home. My younger brother immediately took the lead to pull carpeting out of the home, replace flooring and paint my parent’s bedroom.

My older brother’s job is to keep my dad calm and help with whatever needs to be done. Believe me, keeping my dad calm is a BIG job (love you daddy).

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5-year-old nephew cleaning my mom’s

My sister-in-laws, nieces, nephews, my children and Nick worked their butts off to help us get the house ready and supported us through the tough time. Support was their job.

And although I definitely got upset during my mother’s 12 day stay at the hospital, I never did in front of her. I knew I had to be strong for her and do my job. Beth is right, “We don’t get to be upset. We all have jobs to do.”

What is your role or job in your family?

Sixth Grade Romance

My 12-year-old son Joey was asked out by a girl a few weeks ago. My 14-year-old daughter Andi was home sick that day. The girl, we’ll call her T, must have told her older sister of her plans because she texted Andi by noon telling her their younger siblings were dating. I knew by 12:30. Joey called me after school to check in. I asked if he had anything else to tell me. “HOW ON EARTH DO YOU ALREADY KNOW, ” he responded. I said “because moms know everything.”

hearts

Really, today’s technology is what allowed me to know so quickly. I even knew the details. She had her friend give him a note that said “will you go out with me?” He verbally told her yes.

I didn’t know how to feel or what to think of all this. A girlfriend at age 12?? I figure they will chat at school and maybe hang out together at the school dance.

But for the first time ever, Joey asked to go see a play… the middle school play because T was in it. He sent her a candy gram. I thought it was sweet but the mother hen in me was a little nervous.

swedish-fish-red-theater-box-500x500And then Valentine’s Day arrives… He knew he had to get her something but was smart enough to not go overboard. Well really he couldn’t because I would have never given him money or even allowed him to spend much of his own. He was actually quite clever. He made her a card that said Will You OfFISHally Be Mine? on the outside and Happy Valentine’s Day on the inside. A box of Sweedish Fish candy was attached. I might have to keep an eye on that Casanova.

How do you handle young romances?