Home Sweet Home

my family

my family

As we pulled in the driveway and unloaded the car all I could think of was sleeping in my own bed. I lugged our bags up the steps, sent Joey up the stairlift, got him settled on the couch with a cartoon and then collapsed in my bed. A few hours later I feel like a new person. I would be looking forward to a good night’s sleep in my bed tonight but instead, I will be sleeping on a bus with a bunch of middle school kids. Wait, I should rephrase that. Instead, I will be losing my mind awake all night on a bus with a bunch of middle school kids.

Oh the things we do for our children! We are leaving tonight for Washington D.C. for the 8th grade trip. We will change in a gas station tomorrow and start touring the city immediately. I won’t see a hotel room until late Thursday night. Attention other 8th grade parents: What were we thinking when we signed up for this trip????? I guess we were thinking we wanted to have this time with our kids.

I’m sure you are all curious as to how Joey is doing. He’s home. He can walk. He’s dragging his leg a little but he can walk And it doesn’t hurt. I don’t know if it was the steroid injection, the physical therapy, the massages, the acupuncture or a combination of all but he can walk without pain and without assistance! We decided to do outpatient physical therapy instead of inpatient rehab. He will have acupuncture, pysical therapy and a massage on Thursday. I really think that we just overdid on it spring break. His body hadn’t done that much physical activity in a long time. Now I know to watch the amount of activity and to get him a massage or other treatment immediately if we do a lot. He’s also going to increase his exercises at home to try to strengthen the hip and leg.

I really don’t know why we had this setback (and neither do the doctors) but we do know that it’s NOT LCH and that’s what’s really important right now. Although I know with my network of friends and family and our doctors at Cincinnati Children’s Hospital that we could defeat Histio again, I really don’t want to take that battle on. And our fight with Histio has prepared us to deal with almost anything else without blinking an eye. We got this!

Joey loves seeing your comments so please leave words of encouragement. Oh and wish me luck on this bus trip!

Be sure to check out Raising2tweens on Facebook.

P.S. If you are on this trip with me, let’s avoid talking about Joey’s condition. I want to focus on Andi for the next few days. She deserves it!

Could he be Pain-free!?!

The smell of Lysol, crying babies and sterile walls… Chatter in the hallways, mediocre food, beeping IV machines and sleepless hallways… This would be horrible if it wasn’t for the amazing doctors, nurses and staff members at Cincinnati Children’s Hospital who have made a point to make us as comfortable as possible.

Starting to see that smile again

Starting to see that smile again

Joey has been put under three times in the last week for different injections, MRIs and other tests. We don’t have any real answers at this point. But I do have good news. Something worked today… He has ZERO pain right now. He has not screamed out once since the steroid injection this afternoon. He has not had a shooting pain and the aching pain in the hip is gone. For the first time in weeks, he let someone touch his hip and thigh without screaming out. He actually let holistic care massage the area.

He even wobbled to the bathroom without crutches but assistance from me. This might not sound like much to most people but this was HUGE. He has not let that foot touch the ground for weeks.

As of now, the doctors are talking about transferring Joey to the in-patient rehab center so they can get him walking again. This plan could change if the pain returns. Pray that it doesn’t.

As long as things don’t change much, I am going to go to DC with Andi. My incredible friends and family have promised to care for Joey while I’m gone. I am so lucky to have so many amazing people in my life.

Be sure to like my Facebook page and click “follow” on the blog so you can continue to get updates. Joey loves reading your messages of encouragement so keep them coming!

Zombie Moms

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

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?