Monthly Archives: January 2014
Representing Cincy Children’s at Cyclones Game
We arrive at the arena at 6:30 p.m. We’re early so we are able to watch people file in and find their seats. We know several people coming through the doors so they stop by our seats to talk. Some sit in the rows behind us even though that’s not their assigned seat. Friends are giving Joey high fives as they all laugh and goof around together. Joey is visibly getting anxious. He keeps asking if it’s time…
7:10 p.m. finally comes. I walk Joey, my 12-year-old son, to the meeting spot. The U.S. Bank Arena employee hands me a waiver. I sign. He then leads us through the stadium and down toward the ice rink. As we walk down the steps some good friends see us. “JOEY!” they scream. They are all wearing Team Super Joey T-shirts. This makes him even more excited.
We get to the penalty box where the employee places a helmet on Joey and explains the process. First a beautiful girl with an amazing voice goes out on the ice to sing the National Anthem. Now it’s Joey’s turn.
With thousands of people watching, he heads out on the ice, remembering what all of his friends have said “don’t slip on the ice!” He gets to the center where the Cincinnati Cyclones mascot hands Joey the puck. The center from each team is there ready to go. Joey drops the ceremonial puck, shakes hands with the players, grabs the puck and heads off the ice.
While he was on the ice, the announcers tell his story:
Watch video: http://youtu.be/8ZMn8Jszyes
Every day, the experts at Cincinnati Children’s Hospital change the outcome for children and their families. One of those families is here tonight to share their story with Cyclones’ fans. Joey Holt was diagnosed with Langerhans Cell Histiocytocis, a cancer-like disease that causes the white blood cells to attacks bones or other organs, at 10 years old, which led to the disintegration of his hip bone. Joey underwent a bone graft, four months in a wheelchair and a year and a half in physical therapy and still deals with chronic pain periodically, but thanks to Cincinnati Children’s hospital, he can walk, run and do many other “kid” things.
Today, Joey is a happy 12-year old who attends Highlands Middle School, is a member of the school chess club, and “Odyssey of the Minds” team. Joey hopes his love of science leads him to find a cure for Histio someday. Joey’s family are big hockey fans, but this is Joey’s first game!
As we walk back up the steps people reached out to give joey five as they continued cheering him on. He was smiling ear to ear and beaming with excitement. We had a great time watching the game. At least 40 members of Team Super Joey were in the crowd. Several, including Joey, ended up on the jumbotron dancing with their blue Team Super Joey shirts on.
The entire night was a lot of fun ending with a Cyclones win and indoor fireworks. I don’t think Joey quit smiling the entire time we were there. His sister Andi and all of our friends had a great time too.
This evening was made possible through Cincinnati Children’s Hospital Champions program. They asked Joey to participate and provided our family’s tickets. It was all pretty awesome.
Pinkalicious Ticket Giveaway!
The Children’s Theater of Cincinnati presents Pinkalicious the Musical. Based on the popular book by Victoria Kann and Elizabeth Kann, this is the tale of Pinkalicious, who can’t stop eating pink cupcakes despite warnings from her parents. Her pink indulgence lands her at the doctor’s office with Pinkititis, an affliction that turns her pink from head to toe – a dream come true for this pink-loving enthusiast. But when her hue goes too far, only Pinkalicious can figure out a way to get out of this pink predicament.
The show runs:
Friday, Feb 14 at 7:30 PM
Saturday, Feb 15 at 2 PM*
Saturday, Feb 15 at 5 PM
Sunday, Feb 16 at 2 PM
Saturday, Feb 22 at 2 PM
Tickets start at $7 and can be purchased online (additional fee applies) or at the box office.
GIVEAWAY: Raising2Tweens is giving away four tickets to this awesome show. The tickets can be used Friday, Feb. 14 at 7:30 p.m. (what a great way to spend Valentines as a family!) or Saturday, Feb. 15 at 5 p.m.
Should Children be on Social Media…
I admittedly was a potty mouth in high school. I guess I thought it made me cool. I was one of those girls who called their friends the B word in a “loving” way. I would throw around the F bomb like an idiot. I realize now it didn’t make me cool but instead the trashy potty mouth girl. Now my mom is going to be shocked to hear this. I remember the first time I said damn around her… she wanted to ground me for two weeks. I think I was 17. If my mom would have heard me talk like that out in public, she would have locked me in my room for a long time. But my mom had no way of knowing since I never talked like that in front of her.
I realize that some kids these days also have potty mouths. But the difference is, they don’t hide it. They put it right on social media. Which brings me to the question: should children be on social media? I say yes if they meet the platform’s age requirements AND their PARENTS DO THEIR JOB and monitor their social media pages! I am amazed by the stuff I see teenagers post on Facebook, but am more amazed by the fact that their parents do nothing or let it go on for hours on end.
My 14-year-old daughter has a Facebook page. She is required (by me) to be friends with me, my boyfriend, my best friends, her grandma and her dad. That way we can all watch the communication on her page. I also sign in to her account on a regular basis so I can check her messages. I am confident that if there was an inappropriate post on her page, it would be caught within 15 minutes. And since I know her password, I could delete it immediately.
So today I couldn’t help but notice on Facebook the four teenage girls who tore each other apart over several hours. They called each other every inappropriate name you can think of, including whore, B and mother F’er, and threatened to physically harm one another. I noticed that the posts were removed in the evening but it was up for hours. Last month I noticed that a 10th grade boy wrote on his page “Parents told me to do my homework. I told them to F### off,” except he didn’t use pound signs. That post is still there.
I don’t claim to be a perfect parent. In fact, I know I’m not. But If I ever saw posts like this on my daughter’s page, not only would the post be deleted but so would her account. We have to hold our kids accountable. Don’t let them get away with being the trashy potty mouth. Unlike our parents, you can actually stop it… at least on social media.
Do you monitor your child’s social media activity? Have you ever had to delete a post or give a warning? How do you handle it?
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Mickey’s Music Festival at U.S. Bank Arena
What: Disney Live: Mickey’s Musical Festival!
Where: U.S. Bank Arena, Cincinnati
When: Saturday, Feb. 15 at 1 p.m. & 4 p.m.
Ticket Price: $18-55
Mickey Mouse and friends rock the world with the stars from The Little Mermaid, Aladdin and Disney/Pixar’s Toy Story in their new touring show Disney Live!Mickey’s Music Festival. Disney hits are remixed to the hottest sounds of today featuring hip hop, pop, swing, reggae, rock, country and much more! The irresistible lineup of performers, including Mickey, Minnie, Donald and Goofy; Ariel, Sebastian and Ursula; Jasmine, Aladdin and Genie; and Woody, Buzz and Jessie; are among the more than 25 Disney stars featured in this jam session fit for the entire family! You can’t resist dancing, singing, playing your air-guitar and laughing with this band of characters! Come join them at Disney Live! Mickey’s Music Festival for a lively concert experience guaranteed to deliver enough rockin’ memories to last a lifetime.
You can purchase tickets here. Are you going?
Another Mother’s Experience with Rare Disease
Five More Things To Know About Rare Diseases
Earlier this month I wrote a post called 12 Things To Know About Rare Diseases. Since then I have received a lot of messages including other things people should know. So here are five more things you should know:
1. Chemo Stereotypes – “There is a stereotype of all children on chemo being frail, thin and balding,” a mom in my online Histio support group says. “I got grief from a customer in line at the grocery store the other day. Looking me up and down and prejudging myself and my son. She was making comments about my son being too big. I wanted to yell at her and tell her my son is on chemo and steroids try telling a toddler he isn’t really hungry.”
Although TV and movies show us that someone on chemotherapy is thin, frail and bald, that isn’t how it always is. There are several different types of chemo therapy and each has different side effects.
2. A Little Perspective – One mother of a child with Histiocytosis says explaining the rare disease to your child, that could statistically kill him, is heartbreaking. “They (doctors) don’t explain how to answer, ‘Mommy, I don’t want to die.'” She says its hard to hear other parents complain their kids are driving them nuts or they can’t for them to go to school when she’s just thankful her child is still alive.
3. Caregiver Taking Care of Themselves – I hear parents of children with rare diseases talk about how exhausted they are, that they aren’t eating right and that they miss having alone time with their significant other. Yet, they feel too guilty about having someone else care for the child so they can get a break, take a nap or have a date. I rarely ate after Joey’s bone graft. I would literally forget. And when I would eat, it wasn’t healthy and I rarely sat down to eat. I quickly learned that I had to take care of myself so that I was able to take care of Joey. That meant letting other people take care of him even if it was only so I could take an hour nap or run to the store.
4. Dr. Anxiety – People with rare diseases visit the doctor A LOT! They have a lot of scans and blood tests and many go through chemo or other treatments. Many children start fearing the doctor. They worry about needles, treatment and being hospitalized. As parents we have to find ways to calm these fears even though we know all of these things are a possibility.
5. Insurance Headaches – The insurance company often tries to dictate what types of tests, treatments and meds our children can have. They actually question the doctor. This often causes tests and treatments to be delayed or for parents to have the additional worry of how they will pay for it if the insurance doesn’t come through. They also have to spend time fighting with the insurance company, time that could be spent caring for their child.
Have you experienced any of these things? Anything else people should know about rare diseases? Anything that surprised you?
Knowing that it might be used in a future blog post, what are things you have done for a family going through something like this? If you are a family dealing with a rare disease, what could others do to help?
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Dessert, Snack or Breakfast
My 12-year-old is on a mission to gain weight – doctor’s orders. We don’t want to do this through cheeseburgers and chips. Instead, we are trying to do it the healthy way – lots of protein, loaded with nutrients and calories.
Joey usually isn’t hungry in the morning or just doesn’t want to take the time to eat. So we wanted to come up with something simple and delicious.
What you need:
Jif All Natural Peanut Butter
Instant Chocolate Pudding – Follow box instructions using 2% or whole milk
Spread 1 Tbs of Peanut butter and a heaping Tbs of chocolate pudding on a graham cracker. Top it off with another graham cracker. Repeat until you make desired amount. Put them in an airtight container in the freezer. Chill four hours. They will keep in the freezer for a few weeks.
Joey also loves grabbing these as a quick snack or dessert. They are high in calcium and protein.
What are your favorite go-to recipes?
Packing on the Pounds Can Be Healthy
My 12-year-old son Joey is underweight and the doctors are starting to get concerned. He’s 5-foot-tall and 70 pounds. He also has a rare disease called Langerhans Cell Histiocytosis. The doctors feel having the right amount of weight on him would help if his disease attacks again. So, with the help of a nutritionist at Cincinnati Children’s Hospital, we are on a mission to help him gain weight in a healthy way.
Luckily I love to cook and invent my own recipes. I am going to share some of this adventure with all of you. That includes how the weight gain is going, recipes, etc. And I would love ideas from all of you!
I have created a very easy pasta salad recipe filled with veggies and protein that Joey loves! To make it even better, I can send it with him to school for lunch.
1 box of Ronzoni Garden Delight (cooked)
1/2 can of black beans (more if you choose)
1 cup of chopped carrots
1 cup of diced tomatoes
1/2 shredded mozzarella
1/2 cup of Real bacon bits
1 bag of Tyson grilled and ready chicken strips diced
1 cup of Ranch Dressing
Pepper to taste
Add all the ingredients together in a large bowl and mix thoroughly. Refrigerate leftovers.
One cup is about 275 calories according to My Fitness Pal. It’s also very high in protein, calcium and vitamin A.
Do you have a great pasta salad recipe to share? Feel free to post the recipe here. The next recipe I share will be high in calcium, delicious and can be served as breakfast, a snack or dessert!
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