Tag Archives: Children’s Hospital

The Dog Park isn’t Just About the Dogs

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Buddy & Scout are buddies

Buddy & Scout are buddies

Scout & Chance - Attack (they really love each other)

Scout & Chance – Attack (they really love each other)

When I adopted my awesome puppy Scout a year and a half ago, I couldn’t wait to take her to the dog park. I wanted to see her play with the other dogs, run, play fetch, make doggy friends and be her cute little self. I was excited to see her play with other cute doggies too. Never did I imagine the bonds I would make for myself at the dog park.Within just a few weeks of taking Scout there on a semi-regular basis, I started to make friends with the other dog owners. I would plan our visits based on the times other dogs and their owners came to the park. It’s kind of like how you become friends with your kids’ friends’ parents. I became friends with my dog’s friends’ owners.  Just like kids, we would have play dates for our dogs at the park. We’d even have sleepovers. If someone is going out of town and I can help, I keep their dog and vice versa.

Jump Bama!

Jump Bama!

crazy girls

Eventually a few of us started making plans outside the dog park. We would grab lunch, have dinner at each other’s houses or go shopping. We started having Friday happy hours, celebrating each other’s birthdays and truly becoming good friends. The ages of the dog park crowd range from 21 to probably 70. No one really seems to see age there though. We all have at least one thing in common – we LOVE our dogs – and that seems to be enough for us all to bond.

The dogs watch over Landon as he works in the yard

The dogs watch over Landon as he works in the yard

I feel so grateful to have met these people and their dogs. Not only do they help me with my dog, they help me with my house, my kids and so much more. Two of my “dog park friends” actually cleaned up and fenced my yard in for me. I only paid for supplies, beer and food.

Our friendships were truly shown though when Joey started dealing with pain again. He’s been in and out of Cincinnati Children’s Hospital and out of school for about a month now. I have used all of my sick and vacation days from work to take care of him so I have had to find someone to stay with him each day. My “dog park friends” have been amazing through this. Due to their unusual work schedules, they have been able to care for Joey and get him to appointments during the day while I work. He has LOTS of appointments. He is going to PT at least once a week, massage at Lifestyle Resumption twice a week, acupuncture two to three times a week plus seeing other doctors as needed. None of these friends expect a dime or anything else for doing this.

Crazy Dogs!

Crazy Dogs!

Due to the stress and time restraints they know I have been under, they have even voluntarily cleaned my kitchen, worked in my yard and done other helpful household chores when I haven’t even been home. Others have taken my dog on a regular basis to the park and their homes because they know I haven’t had the time to exercise her like she needs.What started out as a place to let my dog run has become a place to create life-long friendships and support. It’s amazing how you can find that in the most unexpected places. I don’t think I could have gotten through the last few months, or even the last year, without my amazing “dog park friends.”

Where is the most unexpected place you have made life-long friendships?

P.S. If you are not, you should be following us on Facebook.

P.S.S. Want to help us find a cure for Joey’s disease? Sponsor Team Super Joey in the Histio Walk Ohio!

Doggies loving Landon

Doggies loving Landon

Scout at the dog park

Scout at the dog park

To Leave or Not to Leave

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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.”

Zombie Moms

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It might not be the Walking Dead but I am surrounded by zombies. Although there are a few male zombies, they are mostly female zombies. Their hair is matted and ratty or pulled back in a messy ponytail. They have dark circles under their eyes. You can tell by looking at them that they don’t sleep. Their skin is dry. Their clothes are wrinkled and maybe even a little stained.

These aren’t your traditional zombies though. They aren’t going to try to bite you… well probably not. But they might just grunt when spoken to. They might snap sharply at others if agitated. And they will go crazy if they don’t like the way you treat their young.
These zombies are really moms (and some dads) who are staying at Cincinnati Children’s Hospital Medical Center with their child. At the time I’m writing this, I have been at Children’s Hospital with my son for 48 hours. This will be our third night staying at the hospital. Joey screams out every few minutes in pain. It takes a lot to get him to sleep and he doesn’t sleep well. Doctors and nurses come in throughout all times of the day and night so no one sleeps more than an hour or two without interruption.

The third night...

The third night…

I find refuge by walking the halls, eating outside and walking the campus when someone is able to give me a break. I am lucky to have family and friends to help. I see other parents staying day in and day out with no one to relieve them. Their break consists of walking to the patient kitchen for a cup of coffee or juice.

My favorite place on Children's campus.

My favorite place on Children’s campus.

No matter if you get a break or not though, you can tell who the parents of the ill child are. You can tell by the hair, dark circles, wrinkled clothes and the constant look of worry. We see each other in the hall and give each other or nod or a smile to let the other know we understand. It’s an immediate bond. I don’t want to run from these zombies; I want to hug them.

Thankful My Child Can Walk & So Much More

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Last year at this time I remember being thankful that I was able to buy a house just a few months before, having great friends who helped me with my house, having two awesome kids who were believed to be healthy and my having a job I enjoy.  The kids and I were so excited about Christmas in the house and didn’t even make it to Thanksgiving before we decorated. We were thankful for a few other life changing events as well. It had been a great year.

This year, a week before Thanksgiving, I am anxious to put up my holiday decorations, but more than anything, I am thankful my son can walk and is going to be okay.  Joey was diagnosed with LCH in April. This cancer-like disease ate away at his hip bone causing extreme leg pain, a hip bone graft, time in a wheel chair, time with a walker, a lot of physical therapy and a lot of heart ache for our family. As I write in the previous blogs, it is a very rare disease effecting only five in one million. I had never heard of it and neither did anyone I knew.

Joey’s doctors were very optimistic when they would talk to us about it. However, they would repeatedly tell me that they couldn’t promise great results. I felt truly helpless. It wasn’t until a week ago when I read an email from one of the doctors (we talk a lot via email about Joey’s diagnosis – Children’s Hospital Medical Center is incredible), that I truly realized that there was a real possibility that my son would never walk again. “…were very worried that the hip joint cartilage might have been damaged by the Histiocytosis, but that risk is getting smaller as Joey recovers. It is great to hear that he is walking well,” the doctor stated in his email. I knew the entire time that not walking was a possibility but I never let myself consider it. In fact, I never even told Joey that was a possibility.

At the diagnosis and months following they explained over and over that the LCH could attack other parts of the body. Two weeks after surgery he almost ended up in a Spica Cast. An amazing nurse stopped that from happening and advocated for Joey better than I ever could have at that point. She insisted more tests be done. That’s when they found out there was nerve damage in the leg. My son would lay in bed screaming bloody murder even after high doses of morphine. He spent a week in the hospital. The pain eventually eased up after having acupuncture.

Joey wasn’t able to finish the last two months of the fourth grade but luckily he is a good student and was able to move on to the fifth grade. The school administration and his teacher were incredible through this time and made sure we had everything needed for him to pass the fourth grade.

Our pediatrician and former orthopedic have learned about LCH as a result of Joey’s story. Hopefully they will never have another patient with Histio but if they do, they will be more likely to diagnosis it. It was just me and Joey when we received the diagnosis at Children’s. I broke down at one point (Joey was not around) and had a hard time comprehending everything I was being told. As a result of our story and others, Children’s has a new policy on how they give difficult news. A child life advocate is with the family during the diagnosis.

I have met some incredible people through an online Histio support group. Unfortunately, some of them have lost children to this disease but we have been there for each other through it all.

My 14-year-old nephew Raymond became mine and Joey’s rock. He gave up a lot of his summer to help us.  He would entertain Joey by playing video games and spending time with him. He would allow me to get out of the house or get stuff done around the house. My entire family – parents, siblings, nieces, nephews, cousins, aunts, uncles, etc – chipped in. My mother stopped working for several months in order to help us get through everything. My friends, and Joey’s, were also amazing.

My daughter Andi was also astonishing through this whole thing. Her life had been turned upside down. She was on her own for so much since I wasn’t able to leave Joey alone. She bounced around from grandparent to grandparent while I stayed in the hospital with Joey. She was so worried about her baby brother all the time. But she stood strong and dealt with it all like a champ.

Through all of this, I have also become somewhat of an advocate for Histio. Joey and I were able to be part of a Histio Awareness story and I had the opportunity to write a story about being an advocate for your child for Cincinnati Family Magazine.

So this November, I am still thankful for my house, my job, my family and my friends but I am also thankful for so much more. I am thankful that my son can walk. I am thankful for strengthened relationships with my nephew, Andi and other family members. I am thankful for the Histio families and Children’s Hospital doctors and staff that I have met along the way. I am thankful for Nurse Kelly, who stood up to everyone and made sure Joey got the care he needed. I am thankful to be part of such an incredible school district who did everything they could to help us. I am thankful for acupuncture. I am thankful for technology and bone grafts. I am thankful my story has helped changed policies at the hospital. I am thankful for being able to advocate for Histio awareness. More than anything, I am thankful that my son is okay and that my family has survived this and is stronger than ever.

As Joey loves to say: “When life gives you lemonade, make lemons and life will be all like whaaat?” – Phil Dunphy, Modern Family.

So what are you thankful for this year?