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?

Taking a Break from the Worry

As parents I think we forget to take time for ourselves. My family has been a lot over the last six months (See Catching Up).There isn’t a day that goes by that I don’t worry that the LCH is going to reactivate in my son Joey. There isn’t a day that goes by that I don’t worry how both kids are adjusting to our “new normal,” how Joey’s recovery is going or the endless amount of medical bills that have come along with this disease. In addition to that, I worry about the normal things like the mortgage, my job, laundry, cleaning the kitchen, carpools, my friends’ kids (especially one particular one right now – See Pray For Clay), if the kids are eating healthy enough, etc. It seems to be an endless amount of worry.

My worry was so intense two weeks ago that I literally had a migraine for six days. I would wake up and go to bed with it.  Nothing seemed to help. I tried pain relievers, lots of sleep, prescription medicine, acupuncture, massage and chiropractor. Everything would help or dull it briefly but nothing took it away entirely. I know it was a result of grinding and clinching my teeth, which was a direct result of worry.

I try to do little things for myself like get a pedicure every three to four weeks, hang out with friends or have a glass or three of wine. But I never do much more than that. Honestly, I’m very anal and like to have everything in my life planned. Yes, I’m one of those… a PLANNER. It even drives me crazy. I take months and months to plan vacations. I will review hotels for weeks before making a decision. My planning addiction is what makes me volunteer for everything – Girl Scout Leader, Soccer PA, Fundraisers, etc… I am in control if I’m the one planning it. If I plan it, I know what to expect. Yeah, I have issues.

Last Saturday I woke up with a dull headache but had to do a live interview for my employer. So I dragged myself out of bed, got ready and headed to the studio. I had plans to meet my friends Amy and Christine for a pedicure after. On our way to the salon, Christine mentioned there was going to be a meteor shower that night and how she would love to see it. She also mentioned that she had never been to Red River Gorge. Next thing I know, we are heading home from our pedis to pack our bags, grab our puppies and head to the Gorge. I maybe spent 10 minutes packing. I didn’t even take a flashlight.

We loaded the car and were on our way. Once we got to the area, we started making calls and found a cabin. We went on a hike that evening and the next morning. We spent the evening watching the Meteor Shower and seeing at least two dozen stars shoot across the sky. It was amazing. We also enjoyed a soak in the hot tub and just relaxing on the deck of our cabin while our puppies played. Although my children and everything else was in the back of my head, it was so incredibly relaxing.

I felt completely reenergized after that 30-hour trip. My migraine was finally gone and I even felt like a better mom. This little trip reminded me how important it is for parents to take time for themselves. We need to get away from the stress, take a break from the kids and recharge. I am going to try to make a point to do something for myself every couple months. It might not be an overnight trip every time but it will be more than a pedicure. What have you done lately to recharge?

Catching Up

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I have not had a new entry since late March and a lot has happened between then and now. A LOT – LIFE CHANGING EVENTS.

Let’s see…

  1. Attacked by a dog
  2. Son diagnosed with a cancer-like condition, had a bone graph and was in a wheel chair
  3. Daughter turned 13

Yes, I, the crazy dog lover who goes to the dog park every single day and has had a dog her whole life, was attacked on March 31. Very long story short, my neighbor’s dog got loose and she was not home. I was on the sidewalk in front of her house deciding what I should do when the 150 pound Rottweiler mix lunged toward me. He seemed to be going for my face but I blocked him with my arm. Thank goodness because muscles were actually hanging out of my arm when it was over. He actually got my arm and leg a few times. Thank goodness for another neighbor, who in spite of having a baby in a Snuggy on his chest, beat the dog off me because the dog was not going to stop. Unfortunately, my daughter, who is now 13, witnessed the whole thing from maybe 10 feet away. We both still have nightmares. Mine often include seeing her face watching the attack. Thank goodness it was me and not Andi. I did end up with five stitches in my arm, a nasty infection, permanent scars on my arm and leg, a little bit of nerve damage and a new fear of strange dogs. Yes, the neighbor is taking care of things through her insurance and the dog no longer lives on my street.

My son had been complaining for a few weeks about pain in his leg. It first appeared as a pulled muscle in his thigh but it kept getting worse and seemed to be spreading. I took him to the pediatrician who after blood work and x-rays told me it was growing pains. My gut told me it was much more. I scheduled an appointment with Commonwealth Orthopedics in Northern Kentucky hoping they would do a MRI. They refused to do the MRI saying it would be emotional for him and that it was just growing pains. Again, my gut told me it was much more. He literally fell to the ground the next morning when he tried to get out of bed. I called the pediatrician insisting it was more and was finally given a referral to Cincinnati Children’s Hospital Orthopedic Center. At this point, I was convinced my son had Muscular Dystrophy. His leg literally dragged behind him, he didn’t want to do any activities at all and eventually started using crutches. The doctor at Children’s took it serious, agreed it was much more than growing pains and scheduled an MRI for the next day, Saturday, April 21. Within five minutes of leaving the MRI, they called and said they saw something and figured it was just an infection. The woman told me we’d need to see the doctor early in the week for an antibiotic. I was so relieved to know they had an answer that I cried of joy. That quickly changed on Monday, April 23.

Dr. Johnson of Cincinnati Children’s had his nurse Judy call me Monday morning. “Ms. Holt, we need you to bring Joey in this afternoon and you might want to bring your husband,” she says. I explain that we are divorced and that his job is not nearly as flexible as mine. I ask if it’s okay if I come by myself. “Yes, that’s fine.” At this point I’m still thinking he just has some infection and needs an antibiotic. I quickly wished Joey’s dad, my dad, my mom, brother or some other adult had been with me.

“It’s not the big C,” Dr. Johnson immediately says. Joey jumps in with “I know what the big C is.” He’s a funny kid. The doctor continues by telling me that his hip bone has been eaten away, he has a rare condition called Langerhans cell histiocytosis (LCH), which is only found in about 5 in 1 million kids. Adults can have it but it’s usually diagnosed in children between birth and 4-years-old (Joey is 10). He explained that it’s in the cancer family but there is debate about whether it is a cancer or not. He told me that they don’t know much about it, including how it is caused. I remember him saying something about chemo if the bone graph of his hip doesn’t work. I believe my mind went completely blank at this point. I am not sure that I heard or understood anything else.

Joey was sitting right there for all of this so I stayed as strong as I possibly could. I was so numb. Next thing I know, we are in x-ray so he can have more tests. I asked to step out of the room for a second and just break down completely. I called his dad and explained what was going on the best I could. I then got myself together for Joey and headed home. Once I wheeled him inside, I called my parents, siblings and best friends. His dad came over and we started looking the disease up on the computer and preparing ourselves for the surgery that was to take place just two days later.

To recap, we were told for weeks that it was growing pains, saw the Children’s Hospital orthopedic on a Friday, MRI on Saturday, diagnosis on Monday and a biopsy and bone graph on Wednesday. It was crazy!

The 5 hour surgery went as well as could be expected and he was sent home in a wheel chair. We were told that he could not bear weight at all for 8 to 10 weeks (it was 9). I have a steep hill and several steps up to my house. My son had to be carried in and out the first few weeks. We only left for doctor appointments because it was too hard to get in and out of the house. Luckily some friends helped me track down a stair lift and get it installed at a reasonable price. This made our lives so MUCH EASIER. It’s amazing how the little things do that.

He was recovering extremely well for two weeks. We sent him back to school in the wheel chair on a Monday. He came home tired but I figured that was expected. He ended up screaming out in pain all night. It was awful. We called the doctor the next morning and went in. Our orthopedic wasn’t there but another one came in to see Joe. At one point we were told he was going to be in a hip spica cast which meant he wouldn’t be able to sit up, go to the bathroom or anything on his own. I once again was in complete shock. Luckily there was a nurse named Kelly who was a true advocate for my son. She asked all the right questions and demanded tests that made the doctors realize the cast wasn’t needed. Apparently he had a nerve issue from a piece of the graph that had moved and hit a nerve in his leg. Seriously??? He would just scream out in pain over and over again. He was admitted to the hospital for five days where they ran more tests and tried to manage his pain. I finally just asked to come home and manage the pain myself.

Pain management suggested we try acupuncture so we did. Kristen at Tiny Needle Acupuncture was truly amazing. Once the needles were in, Joey said “this is the first time I have been pain free in months.” Tears just rolled down my face. I was so thrilled my son was pain-free, even if momentarily. After a few visits though, he was completely pain-free. I was a skeptic but not anymore. I even tried it for my lower back and it was great.

After nine weeks in a wheel chair, Joey now uses a walker. He even took a few steps on his own today. He should be able to walk normally in just a few weeks. He probably won’t ever be able to play sports but we don’t even care about that at this point. We have come so far. Unfortunately, LCH can reactivate at any time and in any part of the body. The treatment could vary from surgery and steroid treatments to chemo and many other invasive treatments. Luckily there is only a 33 percent chance it will reactivate in Joey’s bones or skin. It’s a very small chance that it will infect his organs (Thank God). Joey will have regular scans and tests to check for LCH.

Joey did develop a talent through all of this. Thanks to my co-worker Amy for delivering library items and Artie’s Magic Shop in Covington, Joey has become a magician. He has a lot of fun showing neighbors, friends and family his tricks.

So in the midst of all this, my daughter Andi officially became a teenager on May 28. She had three friends stay the night and had a cake decorating contest. I think it just made me feel older.

So now that you are all caught up… I will try to post regularly and keep my posts much shorter.