My Son Has a Rare Disease

histio ribbonMy son has a rare disease. Ten months ago we were told about LCH (Histio), something we had never heard of. I have spent the last ten months sharing our story through Facebook, my blog and the media. I want people to understand what LCH is and provide the support to those who don’t have family and friends nearby.

During this time, I have made friends with other Histio parents. I have watched friends lose their children to multi organ LCH and HLH. It has been heartbreaking to say the least. I have watched others fight and win their battle with Histio. That has been fantastic! My son has won his battle… for now. Yes, it can come back at any time but we are determined to beat this.

Today is National Rare Disease Day. It’s a day to try to make people more aware of rare diseases. Ironically enough, I received a call from a mother this morning who is concerned about her son. I don’t know this mother but we have mutual friends who connected us. Her son’s story sounds similar to Joey’s prior to being diagnosed. I don’t know if her child has Histio but I know she needs answers.

The fear, the concern, the unknown, the helplessness sounded all too familiar. I held back tears while talking to her; not because I was worried he had LCH but because I know what it’s like to be a parent and be that scared. I reassured her that even if it was single bone lesion LCH that it would be okay. She’d have a hard road ahead of her but her child would be okay in the long run. I told her that she was in the best part of the world – Cincinnati area – to be if her child did have this because the experts are at Cincinnati Children’s Medical Center.  I explained that I would be here for her every step of the way. But I knew that none of that really mattered. She needs answers.childrens hospital

I emailed the amazing doctors who have treated my son and told them about this little boy. They called the mother within minutes and moved things around so he could be seen today. The nurses and doctors understood that this mother has to have answers or it’s going to impact her own health. I am anxiously awaiting a call or email from her.

Another irony of the day is this article that was released about LCH today. It looks like they have had some breakthroughs regarding treatment. That is super exciting!

I know it sounds crazy to say this; I feel like my family has been very lucky through all this. Yes, I would have liked answers sooner, of course it would be better if my son never dealt with this, I wish he never spent a summer in a wheel chair and missed two months of school, it makes me crazy that my son worries all the time that it’s coming back but still, we are lucky. I had the courage to advocate for my child. I had friends and family to support me and answer my late night calls. I had Children’s Hospital 15 minutes from my house. I didn’t have to pay to stay at the Ronald McDonald House and I had my network all around me. My son will have tests for a long time to come but I know we can get through this. As Robin on Good Morning America said the other day “You don’t know what strength is until strength is the only choice you have.”

joey joshIn honor of Rare Disease Day, and my son, I am asking you to please share this post with a friend(s). Awareness is everything!

When have you been forced to discover how strong you truly are? We love reading your comments!

 

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Dinner Adventure

Jessica, one of my best friends, her 13-year-old daughter Alexis and I decided to have dinner out the other night (my children were with their dad). I told them via text I was in the mood for Rio Grande, a local Mexican restaurant. Alexis responded saying she didn’t want Mexican because she had it the night before. I suggested Applebee’s, Barleycorn’s, anywhere at Newport On The Levee, the Elusive Cow or Asian food. Her response was “ewe.”

I asked her to suggest something that wasn’t pizza because I had it the night before for dinner and that day for lunch. Her response “Gahh. I like pizza.” I told her she could get pizza any where. After about a dozen text messages, she suggested Bar Louie in Newport. I thought “perfect, she can get pizza there and I can get Mexican if I want or something else delicious.” While at dinner, Alexis mentioned she really wanted Dewey’s Pizza. I told her she should have spoken up because I could have gotten a salad there but oh well… we were at a place we had agreed on.

So it’s time to order… This is what Alexis (who did not want Mexican ordered):

Chicken Quesidilla

Chicken Quesadilla

Yes, that is a chicken quesadilla with salsa, sour cream and guacamole!  I did ask her over dinner where she had Mexican from the night before. She said Taco Bell. WHAT!?! Taco Bell is not really Mexican.

Here is what Jessica and I decided to share:

Buffalo chicken flatbread

Buffalo chicken flatbread

As Alexis pointed out to me, that is kind of like pizza. Ha Ha.

Since it was National Margarita Day, Jess and I decided we must have a margarita or two.

Margarita

Margarita

The server called it a skinny margarita but she didn’t mention the cost and of course it wasn’t on the menu.

receiptIf you look closely at the receipt you will see that our four margaritas cost us $40! This made our bill about $75 with tip. We were very shocked that dinner for three with only four drinks cost this much! We decided that the skinny margarita was not skinny on the wallet and we needed to get every last drop out of it.

Getting every last drop!

Getting every last drop!

At Rio Grande, Jess and I would have split the $12 fajitas and four margaritas for about $15. Alexis would have had an $8 dinner making our bill about $40 with tip and I would have fulfilled my craving for Mexican.

Lesson learned… Just tell the kid you are going to eat where you want because she doesn’t really know what she wants any way. Ha Ha. Other lesson learned… Ask how much drinks are before you order them!

How does your family decide where to eat when going out? Have you ever been shocked by the bill?

Cincinnati Ballet Giveaway!

prodigal son

 

Raising2tweens is giving away two tickets to the Cincinnati’s Ballet’s Prodigal Son. You get to pick the date: March 22 or 23. This triple bill includes Prodigal Son, Extremely Close and Concerto #4.

My children and I have always enjoyed going to performances at the Cincinnati Ballet. The Procter & Gamble Hall at the Aronoff Center is a gorgeous facility in downtown Cincinnati. The performances are always beautiful so we want you to enjoy the experience.

The choreography for the Prodigal Son is done by George Balanchine and the music by Sergei Prokofiev, performed by Cincinnati Ballet Orchestra, conducted by Carmon DeLeone. The Prodigal Son serves as a reminder of unconditional love. Prodigal Son stands as an enduring testament to the redemptive grace of a father’s love and the power of forgiveness as a wayward son finds his way back home.

In conjunction with Prodigal Son, Cincinnati Ballet is pleased to present Extremely Close. music and dance are weaved together to provide a thought-provoking and beautiful piece.

Concerto #4 is a world premiere work, choreographed and created by Cincinnati Ballet’s own Associate Artistic Director Devon Carney. Set to the fourth composition of Bach’s Brandenburg Concerti, Concerto #4 “is a work without story,” says Carney.

How the Giveaway Works: 

You can enter several ways. The more times you enter, the more chances you have to win. Enter by noon on Friday, March 8. We will randomly choose a winner who will be announced on our Facebook page.

1. Comment on this post saying why you want the tickets.

2. Become a fan of Raising2tweens Facebook page and comment here that you did.

3. Share this contest through Twitter, Facebook, email or text and comment here that you did.

4. Follow this blog by hitting follow and comment that you did.

Disclaimer: The Cincinnati Ballet gave Raising2tweens the tickets to giveaway to one lucky winner.

 

Check out this fantastic post about birthday party planning from the Kenton County Public Library!

Kenton County Public Library

Balloons, clowns, magicians, cakes, cupcakes, comedians, bouncy houses, character visits, oh my! Planning a birthday party for your child, whether they are 1, 8, or 16, can be really overwhelming but I’ve got you covered! If I thought I could truly make a living at planning kids’ birthday parties, that’s what I’d be doing. I LOVE it!  And thankfully, the Kenton County Public Library has plenty of resources to help me plan birthday parties for my children.

My children have a very nice birthday party every year. I enjoy throwing themed-parties at my home but we have had parties outside of the house as well. If you are looking to host a party at a location, you should check out Family Friendly Cincinnati’s post on birthday parties but if you are looking to host at home on a budget, read on and check out our cool video!

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Connecting With Women I Don’t Know

I have recently found a bond with 25 women who I don’t actually know. Okay, well I know a few of them but not most of them. Although I think all of them have children, we didn’t bond because we are moms. We didn’t come together because we went to the same school or joined the same book club or gym. Yet, we encourage each other every day, tease each other as old friends would and support each other.

Prior to having kids, I was extremely thin without effort. Once I had children, I put on the weight very easily and have gone up and down over the last 10 years quite a bit. Only six years ago, I weighed about 120 pounds (I’m nearly 5’6) but I had started smoking again and that contributed to the weight loss. I loved being so thin again but I had to make a choice – smoking (being stinky all the time, exposing my kids to second-hand smoke, setting a bad example for the children in my life, cancer, etc.) or a few extra pounds. I decided to go with a few extra pounds. But those few extra pounds gradually turned in to more than that. I always had excuses. Well, I just quit smoking, I’m working full-time, I sit at a desk all day, I’m always in the car running the kids to soccer, etc. Over the last six months or so, the extra weight has really been bothering. Don’t get me wrong, I’m not obese nor do I expect to weigh 120 pounds. I just want to set a good example for my kids and be a healthy weight that I’m comfortable with. I don’t want to have to tuck my muffin top in when I sit down or worry about sleeves because of chicken wing arms. So after thinking about it a lot and never really coming up with a plan, one was thrown in my face one day.

heavy clothesMy friend Chris posted on Facebook that she wanted to host a weight loss challenge. Women would sign up for $20 each and the person who lost the biggest percentage at the end of 10 weeks would win the money. Now, I’m a very competitive person so this sounded awesome to me. Knowing that I probably wouldn’t know too many people, I messaged several of my own friends and family asking them to do it with me. Crickets! No one responded. Although I am very outgoing, I was a little shy about doing this on my own but I decided I had to. And so did about 25 other women, most of who I don’t know personally. So we started by weighing in at Chris’s house one night. Some of us shared tips on dieting, calorie counting, our favorite aps and exercise videos. We weigh in every Thursday night to see our progress. But it doesn’t stop there.

My favorite workout video

My favorite workout video

We have all come together because of one friend, a social media site and the desire to lose weight. But it has become so much more than that. We laugh together about our challenges and encourage each other. We give each other parenting advice, babysitters’ names and daily support. We are going to have a social event at the end of our challenge with Gallery to Go. Some of us have connected in other ways and are becoming social outside of the group.Although I don’t expect to win, I have lost weight, am living a healthier lifestyle and have made connections with a wonderful group of women. I’ll always be thankful to Chris for making this happen.

Have you ever connected with a group of people you don’t know? Tell us about it!

P.S. Please check out the Raising2tweens Facebook page!