Joey’s goal is to raise awareness for Histio, and hopefully someday find a cure for his disease.
Fort Thomas Boy Fights Rare Disease With a Strong Voice – WCPO Digital, Feb., 2014
Joey’s goal is to raise awareness for Histio, and hopefully someday find a cure for his disease.
Fort Thomas Boy Fights Rare Disease With a Strong Voice – WCPO Digital, Feb., 2014
This post is written by Highlands Middle School seventh grader Roxy Baker.
Note: There might be a few spoilers
I had the opportunity to attend the world premiere of the Cincinnati Ballet’s performance of King Arthur’s Camelot. Unlike many ballets, I wasn’t leaning back in my chair simply appreciating the dance and the story it told. I was on the edge of my seat in anticipation! Being the medieval history buff that I am, the performance was personally touching to me, but disregarding that, the show that the dancers put on was extremely exciting and had me gasping, tearing up, and rooting the characters on with each scene.
The opening act was particularly well done. I would say that words do not describe the effects in this scene. I was in awe by the costumes, and especially impressed by the fantastic job done by the Ladies of the Lake, portrayed by Makenzie Dessens, Milena Garcia, and Katherine Sawicki. I found myself clenching my fists as young Arthur, Charlie Klesa, cautiously made his way to Excalibur. I was silently cheering him on as wounded soldiers kneeled before him as their king. Cervilio Miguel Amador played a wonderful King Arthur, and the companionship between him and Liang Fu as Merlin was heart-warming and endearing. The enthusiasm I felt as Arthur bounded across the stage, now a man, is indescribable. The dance was remarkable.
Janessa Touchet’s play Guinevere’s innocence in her opening scene was very evident, and love-at-first-sight was an obviously predominant component as Arthur and his future queen initially met in the forest. I’ve told many of my friends who hadn’t seen the ballet about one part of that dance in particular, where Guinevere kneels before Arthur, and he stands her up only to kneel before her. It was breathtaking. The same goes for their marriage. The dance was romantic and still youthful, for at this point the couple was still in their teenage years, and was beautifully accompanied by gorgeous, flowing costumes. When Patric Palkens stumbled in as Lancelot, I knew it would end horribly, but I couldn’t help but be on his side. I could tell exactly how much he wanted to become one of the Knights of the Round Table, and I was relieved when Arthur showed him mercy.
Of course, with characters you can’t help but love, there must be characters you can’t help but despise. Yes, I’m talking about Mordred. Danced by Rodrigo Almarales, Arthur’s evil step-brother stole the stage in his opening dance with darkness and mystery. I especially appreciated his costume. Beautifully designed – sinister with a tinge of elegance. After infiltrating the castle and becoming one of King Arthur’s knights, Mordred made his move, casting a spell on Guinevere and Lancelot that would, of course, ruin King Arthur and therefore the whole kingdom, which would be “saved” by Mordred. That sly dog. Anyway, the love scandal of The Queen and The Knight was heart wrenching. I knew I shouldn’t have been rooting for them, but their love was so unmistakable and strong, that I couldn’t help it.
The ending scene will really stick with me, I think. The anticipation was almost too much for my sympathetic little heart. Even after Mordred had exploited the affair of his brother’s wife and his friend, thus completing his job and removing the spell, Lancelot still rode in on his flawlessly manned steed to save his love from the unbelievably pictured fire for which Guinevere would be burned on account of adultery. The two made it out of the fight between brothers alive, but I can’t say the same for those brothers. After supposedly killing King Arthur and his knights, Mordred believes he had won the battle, only to be brought back down by Arthur, who’s will to protect his kingdom and avenge his friends, I assume, kept him alive. In the end, good conquers evil and Arthur defeated the evil Mordred.
All in all, a fantastic job. The choreography was outstanding, the music was perfect for the dances, and the costumes were like none I’ve ever seen. In one word, PHENOMENAL.
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.”
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.
And 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?
Ringling Bros. and Barnum & Bailey® Circus is coming to Cincinnati March 12-16 and we have four tickets for opening night to give to one awesome reader. Built To Amaze!℠, the 143rd edition of the Greatest Show On Earth is sure to surprise audiences with over the top feats of strength, agility and courage. As the momentum builds so does the anticipation, anything can happen when Ringling Bros. Presents Built To Amaze!
I took my children last year. We had so much fun watching the clowns, the motorcycles, the tight rope walkers and so much more. My son even found a food vendor where he was able to have a kids meal with a drink for only $4.75. We hope to find that again!
From the blueprints to the band, the crates to the clowns, the hammer to the high wire, witness the spectacle as we measure out the perfect mix of marvel and majesty in an imagination equation where the impossible comes to life. Ringling Bros. and Barnum & Bailey®Presents Built To Amaze!
Tickets can be bought online or at the U.S. Bank Arena Box Office. They cost between $12 and $85. You can also buy a Family four-pack for $99, which includes four tickets, popcorn, marshmallow pops and lemonades. That’s quite the deal!
Family-four pack Giveaway
Raising2tweens has a four-pack of tickets for opening night (March 12) to give away to one lucky reader. You have up to four chances to win. Only one is required but the more you enter, the more chances you have to win.
1. Comment here saying why you want to win. (Required)
2. Follow the blog by clicking follow at the top and comment here that you did.
3. Like Raising2tweens on Facebook and comment here that you did.
4. Share this contest on Twitter (@gina5620 and #cincycircus) or Facebook and comment here that you did.
Enter to win by noon on Sunday, Feb. 23, 2014. Be sure to comment separately for each entry. The winner will be notified via email and announced on the Raising2tweens Facebook page.
Disclaimer: My family was given four tickets to the circus from Feld Entertainment.
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.
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?
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?
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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Several of my friends have posted what they are thankful for each day in November on Facebook. I have not done that. Instead of posting something random that I come up with each day, I wanted to compile a list on my blog. A list of 28 things I’m thankful for. And if you can make it to the end, you will discover the surprise contest! They are in no particular order.
1. The Fort Thomas Education Foundation Dance – It was there that I met my wonderful boyfriend Nick.
2. Northern Kentucky University – I received my BA in Journalism and Speech Communication at NKU. Without that degree I would not have had 10 years of experience as a reporter and six years in public relations.
3. The internship I had in college (1996). It was there that I met my current boss and made a life-long connection. I now work a job that I love.
4. The opportunity to work as a reporter for 10 years. That experience allowed me to learn a little bit about everything including construction, the housing market, city ordinances, politics, school budgets and so much more. It is also that experience that helped me learn so many useless facts. But most of all, that experience helped me make hundreds of connections with people who live, lead and work in my community.
5. Holly Hill Children’s Home – I volunteered as a mentor when I was 22-years-old. It opened my eyes to so much. My mentee asked for stuff like pop, deodorant and stamps for Christmas instead of the latest technology or hot item. She just wanted her basic needs met.
6. Outdoors/Seasons – I am thankful to live in an area where we can enjoy the seasons, hike, see waterfalls, run trails with our dog, stay in a cabin in the woods, go tubing, enjoy a large amusement park (Kings Island), play in the leaves, swim, pick berries, play in the snow and enjoy a bon fire.
7. My high school junior and senior English teachers – While other teachers, including my guidance counselor, at my high school were telling me not to even bother applying for college, these two teachers were encouraging me every step of the way.
8. My parents and brothers – My dad and my brother Bryan for teaching me to stand up for myself and to speak my mind. My mom for teaching me the RIGHT way to speak my mind. LOL My brother Ray for teaching me that I don’t always have to stand up for myself because whenever needed, he’ll do it for me.
9. Humor – I sometimes laugh at really inappropriate times. I try to control that. But I am happy to be a person who often finds the humor in things. When there is a choice to laugh or cry, I’m going to pick laughing every time.
10. My daughter’s sense of fashion – My 14-year-old daughter is an expert at hair, makeup and what to wear. And apparently I am clueless so I am thankful I have her to steer me in the right direction. I’m also thankful to be able to watch her grow into a beautiful, young woman.
11. My son – There is not just one thing I can say about Joey. I am thankful he’s in our lives. This could be a blog post in itself but Joey has had many health challenges, even in the womb, throughout his life and I’m just so thankful every day of my life that he is with us.
12. Langerhans Cell Histiocytosis – LCH is the rare disease my almost 12-year-old boy has. Although I wish we had never heard of Histio, it has brought some good things in our lives. I don’t live with anxiety and worry like I used to. I’ve realized that worrying all the time isn’t doing anyone any good. Instead of letting everyone’s problems live rent-free in my head, I choose to live life to the fullest. And to do so with my kids.
13. Cincinnati Children’s Hospital – We are lucky to live 10 minutes from the hospital. Cincinnati Children’s is the place to be if you have Langerhans Cell Histiocytosis. The oncology department is amazing. It also has one of the best orthopedic departments in the country, which we are grateful for since Joey has had a bone graft of his hip. The pain team has also helped us a great deal. I must mention Dr. Neil Johnson specifically. He diagnosed Joey with LCH after I fought with doctors for over a month trying to find out what was wrong. He has followed us every step of the way for the last 20 months and ensured the best care possible for Joey.
14. Radio station contests – I win a lot. Nick wins a lot. Andi is doing pretty good too. Thanks to radio station contests, I have been able to enjoy many concerts, a trip to Vegas, $1000 in free James Free Jewelry, restaurant and massage gift certificates, being on stage with Jon Bon Jovi, several movie premiers and so much more for FREE.
15. The Walking Dead – This awesome show allows me to bond with Nick and his children from 9-10 p.m. every Sunday (when we are able to watch together) and when we talk about it throughout the week. Nick was dressed as a walker the night I met him.
16. Sharing Holiday Traditions – Nick and his three kids (21, almost 19 and almost 18) joined in our Christmas decorating tradition this year. I was able to give each one their own ornament for the tree. We decorated stockings, ate dinner together and decorated the tree. I am thankful for the opportunity to get know Josh, Jordan and Joel and I look forward to building on those relationships.
17. Jordan – I am thankful for Jordan’s sense of humor and her ability to make me laugh. I love that she is an individual who doesn’t care what others think of her. She has her own fashion sense and a great attitude toward life. Her work ethic is awesome too. I am thankful that she gives me a glimpse of what life with an older teen girl will be like in a few years.
18. Joel – I am thankful that Joel and I can bond over music, TV shows and movies. His drumming talent blows me away. I love observing him with his friends since they make me crack up laughing. I enjoy joking with him about things I can’t joke with my younger kids about just yet. I love being around him and getting a glimpse of what life with an older teen boy will like in the future.
19. Josh – I love how mysterious he can be at times. I admire how he can quietly sit back and take things in without reacting. I appreciate his love for sports, work ethic and enthusiasm for music. I envy his ability to eat a ton of whatever he wants and never gain a pound.
20. Concerts – Motley Crue, Def Leppard, Kiss, Pat Benatar, Taylor Swift, Bon Jovi, Kelly Clarkson, Scott Wieland, Butch Walker, Indigo Girls… to just name a few. I love music, especially live music. I have been lucky enough to attend at least 50 concerts in my lifetime.
21. My Histio Family – all of the families I have met through fundraisers and online have made this journey easier than it would be without them.
22. The Rusty Griswolds & Taylor Swift’s Video: We’re Never Ever Getting Back Together – I was dressed in pajamas, as T. Swift, the night I met Nick. He might not have noticed me if I wasn’t dressed like that. It was a costume party. The Rusty Griswalds were playing that night.
23. My Community – Our community has repeatedly supported us in our fight against Histio and our care for Joey since diagnosis. They have also remembered Andi every step of the way. We are so lucky to have them… even strangers.
24. My Friends – Not only have they supported us in our fight against Histio and our care for Joey, they have provided me with friendship for years. I have to say a special thanks to Jessica Gibula. She has been my rock so many times. So many people have that I hate not to name each one but that would take all day. Friends have helped with fundraising, shooting a Histio video, sitting with me in the hospital, watching Joey and so much more. I value those friends.
25. My nieces, nephews, sister-in-laws, my extended family – They have all supported us through the Histio fight. But that is no surprise since our family has always taken care of each other. I love my nieces and nephews like they are my own, my sister-in-laws like they are sisters I never had. My cousins…. well some of them are my closest friends. I have a pretty awesome family.
26. Nick’s Family – I thought I had a big family until I met Nick’s. They have all welcomed me and my kids as if we have been part of the family for years.
27. My Dog Scout – She loves me unconditionally. She came in our lives at a time when I really needed her. She has cared for Joey when he has been sick and cuddled with me when I’ve needed it. She really is a family member.
28. My very full life with Nick – We might not be able to afford a fancy car or elaborate trips… but I have a very full life. I have an amazing man who loves me more than anything in the world and I love him. We have five incredible kids in our life. We have a huge, very close-knit family. We have tons of nieces, nephews and little cousins to enjoy. We have great friends. We both have jobs we enjoy, a house we like and neighbors who we love. We share a love for live music, movies, food and family. Yeah, I have a lot to be thankful for.
Happy Thanksgiving everyone! What are you thankful for?
Oh, let’s not forget the giveaway!! I have 11 tickets to Boogie Nights that are valid any Friday night through Dec. 20, 2013. This giveaway is going to be fun. Go to the Raising2tweens Facebook page, like the page and then post your best guess as to why I named my dog Scout (Hint: I love to read and work for a library). I will use random.org to pick a winner from those who guess it right. Be sure to post your guess on the Facebook page. Sharing the blog on Facebook or Twitter (@gina5620) and commenting here that you did will get you a BONUS entry. Entries will be accepted until noon on Sunday, Dec. 1.