12 Ways to Help Someone in the Hospital

Whether it’s a dear friend, a family member or someone’s child in the hospital it’s natural to want to help but people often don’t know what they can do. I have a lot of hospital experience – not only have I been a patient, I have had to take care of my son, who has a rare disease and has been in and out of the hospital, and my mother, who recently spent two weeks in the hospital.

While caring for my loved ones I got several calls from people wondering what they can do. Sometimes it’s hard to think of things on the spot and sometimes you just don’t want to ask. So I thought I’d put together a list of things to do for someone (and their family members) while in the hospital.

1. Don’t ask if there is anything you can do, just do it.

20140218_1232492. Snacks for the hospital room. This is helpful for family members who are taking care of the patient. A few of my co-workers put together a box of snacks for us while my mom was in the hospital. It was great.

 

3. Bring new pajamas. Most patients hate the hospital gowns and if they are allowed to wear regular pajamas they appreciate a new pair.

4. Drop off books, magazines and games that can be played with one other person in bed. Being in the hospital can be boring and the patient or family caregivers might want a distraction.

5. Visit but keep it short. Visitors are appreciated but the amount of visitors can often be overwhelming.  If you are the only visitor, assess the situation and maybe stay a little longer.

6. Drop off the patient and family members their favorite beverages. This saves them from having to run to vending machines and spending extra money.

7. The hospital provides meals for the patients but not the family member who stays with them. Cincinnati Children’s Hospital sells meal cards for family members for $5 each. Having these cards allows the caregiver to not have to leave their child in the room alone while they eat. Many hospitals sell gift certificates for the cafeterias. These are also helpful for family members staying with the patient.

8. Show up with a cup of coffee (or other favorite beverage for the family member) and insist on staying with the patient while the family member gets a break from the room.

9. Send balloons, cards and/or flowers to brighten the room.

10. Remember that the patient and immediate family members might be extremely stressed and worried about the patient’s condition. Even if you are upset or worried do not show it in front of the patient. Take a walk down the hall and pull yourself together. The patient doesn’t need to worry about their visitors too.

11. If a parent of young children is in the hospital or a child is in the hospital taking the parent away from the other children, see what you can do to help. Drop off dinner to the family members at home and offer rides to extracurricular activities and school.

12. In the words of my 12-year-old son: “Candy, bring candy, candy is always good.”

Do you have any suggestions to add?

 

 

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…

cyclones37:10 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 explainscyclones4 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.

cyclones

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.

cayton family

cyclones2The 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. cyclones5

The Best of 2013

The end of a year is a time for many to reflect on the last 12 months. It’s a time to be thankful, a time to look at what you would do differently, a time to reflect on relationships and a time to look at your accomplishments. It’s also a time to plan for the new year. It’s a time to set goals and make resolutions.

My regular readers know that I’m a glass half full kind of gal. We might be given a bad hand from time to time but what we do with that is really what’s important. So today, I am thinking of mine and my family’s accomplishments in 2013 and all the things we have to be grateful for. So many wonderful things have happened in 2013… too many to list in fact but I will give you a few highlights.

1. March 3, 2013 was probably the most important day of 2013 for me. It was the day I met Nick, the man I will spend the rest of my life with.

2. I am grateful for where Histiocytosis, the rare disease my son has been inflicted with, has led my family. I know it might sound crazy but hear me out… I was a person filled with worry and anxiety prior to Joey’s diagnosis. Histio put life in perspective for me. There is no more stressing out about the small stuff… shoot, I barely worry about the big stuff. I know that life will work out. It always does. I now live anxiety-free and it’s awesome. Of course I wish he didn’t have Histio but we are dealing with it.

My Histio Family

My Histio Family

Joey has chosen to be an advocate for the Histio Foundation and Cincinnati Children’s Hospital. He knows he is one of the lucky kids with Histio (no chemo, no organ transplants and he’s going to survive) so he wants to fight for those kids who can’t. My family (cousins, siblings, aunts, uncles, nieces and nephews) and friends have come together to support Joey in his fight. We have virtually met hundreds of people going though Histio and physically met dozens. We have developed an amazing support group and built incredible friendships.

3. My new family, Nick’s family, dealt with something extremely difficult this year – the loss of Nicholas to an accidental heroin overdose. This would rip most families apart but we didn’t let it. Although we deal with the daily pain of this loss, we have come together to fight the heroin epidemic through NKY Hates Heroin. We have been part of the solution and supported each other during the grieving process.

nick specht

4. I am grateful to watch mine and Nick’s five children grow into wonderful young adults. Joey started middle school and Andi started high school. They have both done amazing with the new challenge. Joel joined the National Guard. Jordan graduated this year and committed to going into the Coast Guard in the spring. Josh finished his junior year of college and created a plan for himself. I’m very proud of all five kids.

holt stegner

5. We have had a lot of new life in our family. Nick’s niece brought our newest family member into the world just last week – Keegan. Nick’s nephew and his wife also had a child this year. Two of my cousins announced their pregnancies and are due in late spring. Three of my cousins had beautiful baby girls this year. I love being surrounded by all the babies, playing with them, feeding them and then giving them back when I’ve had my fill.

first cousins

First Cousins (minus five)

cousins xmas

Second Cousins (minus six… 2 on the way)

This year has definitely thrown some challenges at us but we our strong and have made the best of each situation. 2013 has also brought some pretty wonderful things and people in our lives. I can’t wait to see what 2014 has in store for the Holt/Stegner family. Bring it on!

What is your best of in 2013? What are you looking forward to in 2014?

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The 28 Things I’m Thankful For

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.

histio ribbon

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.

family

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.

rusty griswolds

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.

stockings

Happy Thanksgiving everyone! What are you thankful for?

thanksgiving

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.

 

Wishing My Son Has a Broken Bone

joey super heroI hope my 11-year-old son Joey has a broken leg! Or maybe a chipped shin bone! Wait, maybe he has torn his meniscus! That would be AWESOME! IT WOULD SERIOUSLY BE THE BEST NEWS A MOM COULD WISH FOR!

I’m not crazy or one of those moms who wishes illness upon her child. I actually love my son to the moon and back and would be willing to take on any pain for him. Unfortunately, I can’t do that. Joey is no stranger to pain. He had ear infections, strep throat and many minor surgeries since he was only a few weeks old. In April of 2012, Joey was diagnosed with Langerhans Cell Histiocytosis causing him to have a lesion removed and a bone graft of his hip (Read about diagnosis). Well, for about the last two weeks he’s been complaining of knee and shin pain. It’s progressively gotten worse. So bad in fact that he is using crutches and missed the last two days of school.

LCH or Histio, is a cancer-like disease. It causes his white blood cells to go nuts. They think he’s sick so they go into action. Only there is nothing bad to attack so they end up eating his bones away. So my son is having severe pain. My immediate thought is ‘oh crap, his white blood cells are out it again. The Histio is back.’ My second thought is ‘Oh God, please let my son have a broken leg, a chipped bone or a torn meniscus.’ I find myself pleading with God to give him one of these ailments instead.

You see, if it is Histio, it won’t “JUST” be surgery, a bone graft, 15 weeks of a wheelchair, months on end of physical therapy, etc… It could be all or some of those things but it will also be chemotherapy. Chemotherapy: the use of chemical agents to treat diseases. That scares me to death! I’ve never had chemo and I’ve never discussed it with someone who has. All I know is what I’ve seen on TV. When I hear of chemo I think of extremely thin, sickly looking people with tons of tubes, loosing their hair and vomiting. Now my friend Aimee assures me this isn’t what it’s really like but it scares me to death.

One step at a time though, right?

So the first step was to see our oncologist, which we did today. The second step was to get x-rays. We did that and are waiting on results. Unfortunately x-rays probably won’t show Histio but they will show a broken bone!!!! Wohoo for a possible broken bone! The next step is an MRI. I am waiting to hear when that has been scheduled for. That will show us if it’s Histio. If nothing shows up there, we move on to a PET Scan.

So I am asking this of my readers tonight as crazy as it may sound. I know something is wrong. My son is in SEVERE pain. So this is what I ask of you. Pray and hope for a broken bone, a chipped bone or a torn meniscus. Pray and hope for something other than Histio because Histio is one bad mother… and because I’m afraid of chemo.

Seriously, if you pray, please pray a lot for my son to be well and strong and for our family as well. And if you don’t pray, send us some good vibes and positive thoughts! Joey and his 14-year-old sister love to read your encouraging comments so comment away!

Histio Awareness Month; Find a Cure for Super Joey

histio ribbonMost people never get to meet their hero. I was lucky enough to give birth to mine. My 11-year-old son Joey is an amazing young man. His white blood cells attacked and ate his hip bone away causing him to need a bone graft when he was only 10-years-old. He spent months in a wheel chair, then a year of physical therapy and in and out of Children’s Medical Center for a year. Eighteen months after diagnosis, he is training for a 6 mile hike to raise awareness and money for research for Langerhans Cell Histiocytosis.

Histio Hike Ohio takes place Sept. 27-29 at Shawnee Park in Ohio. Team Super Joey is made up of nine friends and family members. We are all looking forward to meeting other families who deal with LCH. It is only diagnosed in about five in a million so we don’t get to meet many other families who are dealing with Histio.

joey super hero

The other night I was tucking Joey in. He was wearing his Team Super Joey T-shirt. I’m not sure how we got on this topic but he said to me “mom, I’m not normal. I’m wearing this shirt because I’m not normal.” It broke my heart to hear that. I told him that no one is really “normal.” Everyone has something unique about him. I reminded him that he has beat this disease so far (it can strike again at any time) and that his courage can help other kids. He decided to do this hike to help other children. To make them realize that they can fight Histio with the right doctors, determination, and courage. I reminded him how he will be meeting others with his disease later this month. He smiled. He remembered that so far he has been one of the lucky ones. Others have lost their lives to this disease but Joey has been lucky enough to only lose a hip bone.

He then told me how he couldn’t wait to go to the hike and meet other kids, and adults, who understand what he has been through. He wants to tell other children they can get through this too. Joey wants to reach out to children at Children’s Hospital who have been diagnosed with Histio. He knows he was lucky enough to live near Cincinnati Children’s (one of the few hospitals that specializes in Histio) and to have his support system so close so he wants to give support to others who aren’t as lucky as him. He truly is an amazing kid.

histio hero

I’ve had other heroes in my life… There have been historical figures, athletes, actors, activists and others who I never met. Honestly, I never thought I’d meet any of my heroes. But now, I’ve been lucky enough to give birth to my hero. My son’s courage is amazing. He builds me up and gives me strength everyday.

I am asking you to show my hero your support by donating any amount in Joey’s name to the hike and help us find a cure for this cancer-like disease. You can also help spread the word about Histio by sharing the picture below and this post via email and Facebook since September is Histio Awareness Month.

histio

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To Leave or Not to Leave

my cutie kids

my cutie kids

How do you choose between children? I have two children. I have an almost 14-year-old daughter who is finishing up her last year in middle school and an 11-year-old son who is finishing up his last year of elementary school but is in the hospital. My daughter’s 8th grade class leaves for DC tomorrow night and I’m supposed to be on that bus. But my son… What do I do?

My son Joey is in the hospital with unexplained shooting pain in his leg and refuses to put weight on his leg. Doctors are doing test after test to try to figure out what’s going on. I have stayed with him around the clock. My daughter Andi has been passed among family members and friends for the last two weeks. Her routine has been a mess. The last year has been hard on all of us since Joey’s diagnosis of LCH and his hip bone graft. I was looking forward to having time away with her and seeing her have fun with her friends.

Joey will probably be at Cincinnati Children’s the rest of the week. They are talking about admitting him to physical therapy rehab so they can get him walking again. This is assuming they find nothing serious in the testing today. I would obviously stay if they find something serious. But I have friends and family who are willing to stay with him around the clock if I go to D.C.

Not only would a lot of money be lost (did not get insurance on trip – duh! I know) but my daughter would be upset if I didn’t go. Plus she’d worry about her brother. She would try to understand I need to be with him but she is only 14.

I know if I go and something happens, I could jump on a plane immediately. We know that the Histio is not back and that it is not life-threatening. So the chances of a big emergency happening are pretty slim.

So what do I do? I want to hear your thoughts…

P.S. Before being put under for tests today, Joey said “Mom, Andi will only have this trip once in her life. I will probably have at least 10 more procedures. Go with her.”