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.
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.
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.
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!
If you read my blog regularly, you know that my family has had a rough year with a lot of emotional ups and downs. Our lives changed drastically on April 23, 2012 when Joey was diagnosed with LCH (read previous posts under LCH). He has been dealing with a lot of pain again over the last few months and has been in and out of the hospital. He has a constant pain in his hip and gets shooting pains down his leg every few seconds. Everyday I wish I could take his pain for him. I think over and over how I wish it was me instead. But it’s not possible to just take the pain away. So instead, my days are spent helping him with exercises, taking him to a variety of appointments including pain team, acupuncture, massage therapy and physical therapy, talking to doctors via email and phone, researching herbal remedies and trying to come up with any way possible to relieve the pain. And all of this is done while working full-time and taking care of another child. Luckily I have an amazing boyfriend, a terrific group of friends and a fantastic family to help. And as they all keep reminding me; I can’t take care of anyone if I don’t take care of myself. So that’s exactly what I did this weekend – I took care of myself with a little help from that amazing boyfriend Nick. We stayed in aquaint little cabin in Hocking Hills, Ohio. I had heard about Hocking Hills for years but had never been there. This was the perfect time to try it out since I was in desperate need of mental break and Joey would be spending the weekend with his dad. We arrived Friday late afternoon, made dinner and enjoyed the hot tub. We got up early Saturday and set out for a day of adventure.
We did a three-hour zipline tour of Hocking Hills. It was amazing! It included 10 ziplines and ended with rappelling down. The first two ziplines would be like the bunny slope when skiing. Then we started with professional zips. We flew through the sky from tree to tree landing on platforms. I don’t even have words to describe how amazing this was. I have dreams all the time that I can fly. This was the closest I will ever come to making that dream come true. It was worth the cost and is a memory we will always have.
After that we headed to Old Man’s Cave and ate our packed lunch at the picnic tables. We explored the cave and small waterfalls. As I traveled down to the cave, I felt as if I had entered a different world. The rock formations were breathtaking and I have always been fascinated by waterfalls. We spent the evening relaxing in the hot tub again. It was so peaceful since the cabin was secluded in the woods.
After dinner and a small storm, I stood out on the deck of our cabin with a feeling of peace, looking at the mysterious sky. The sun rays were trying to peek out from behind the grey clouds. As I stared at its glory I prayed for my son to be healed. I hoped that when I returned home I’d be told that his pain would be gone. I thought to myself that I’d be willing to give up all the inner peace and happiness I was feeling right at the moment if my son could just be pain-free.
After having breakfast at the cabin Sunday morning, we headed to Cedar Falls. I didn’t think I could ever see anything more beautiful than Old Man’s Cave but WOW was I wrong. I was immediately drawn to the waterfall. I slipped on flip-flops and headed out. At first I just put my hands under the fall but realized I wouldn’t be satisfied until I stood under. So denim shorts and all, I stood under the water letting it fall on my head and off my shoulders. It was FREEZING but I found it majestic. We managed to find ourselves in some restricted areas where we climbed on top on the waterfall (Children: do not try this). It was unbelievable to be standing just a foot away from where the water falls and to look over all the people we were just standing with minutes beforehand.
We made our way back to the car and after driving by a few areas we wanted to see, we headed home. We had about 48 hours of an incredible escape. An added bonus was that our phones did not work at all in Hocking Hills (we let family know where we were staying incase there was an emergency) so neither one of us spent any time texting, checking Facebook or on the phone. This allowed for a complete break from the outside world. Not only did I have an amazing experience on my first trip with Nick but I was able to get the mental break I needed and feel refreshed.
As I write this, Joey is in the next room screaming out every few seconds. I so wish I could take that pain for him. I can’t do that but at least I can take care of him. Joey loves reading your messages so be sure to post positive thoughts here.
P.S. If you aren’t following us on Facebook, you should be!
P.S. S. I am open to all holistic ways of treating Joey since traditional medicine doesn’t seem to be working. If you have suggests outside of acupuncture and medical massage, I would love to hear them. Please post in the comments.
“Mom, I can’t live like this.” Those words play over and over in my head like an earworm. “Mom, I can’t live like this.” On Sunday Joey looked up at me with his big blue eyes and his long dark eyelashes and said “It’s not as bad as it’s been before but I’m still in pain. Mom, I can’t live like this.”
My 11-year-old son said those words to me. It broke my heart. I promised him I would do everything possible to make him pain-free again.
He went to school on Monday but the pains became so severe it was taking his breath away. We headed to massage therapy at Lifestyle Resumption. The massage helped but within an hour the pains were back again. He couldn’t go to school Tuesday. I took him to Tiny Needle acupuncture where she did something called the Seven Dragon (needles in back and head). This helped a lot but once again the pains sneaked back up. Thanks to a good friend, we did some hot tub therapy. This also helped but again the pains were back soon after.
He has a constant pain in his hip where the incision from the bone graft is. He also gets shooting pains down his leg. These pains become so severe that he can’t help but scream. Pain medications do not help. He has had several MRIs, x-rays, steroid injections, ultrasound, nerve block, PetScan and more. Joey says that all of the holoistic type stuff – acupuncture, massage, physical therapy and the hot tub – help more than anything. Unfortunately, insurance isn’t paying for acupuncture or massage so three visits a week gets pricey fast. But you know, I’d go without my own necessities if that meant he could be pain-free and not have “live like this.”
The Pain Team at Cincinnati Children’s Hospital has been working with us. They changed his meds up on Tuesday and I hope it helps. I’m going to ask his physical therapist about water therapy at Children’s. This is getting to be a lot for an 11-year-old to handle so he will start seeing a counselor at Children’s later this month. It’s hard for me to handle so I can’t imagine what he’s going through.
Everyone asks what they can do to help. I honestly wish I knew. Prayers and positive thoughts are the only thing I know to ask for right now. And… when you see us out, especially if Joey is with us, don’t ask about it. We know you care and we appreciate that but it’s hard for Andi, Joey and I all to talk about it. We want life to be as normal as it can be… and honestly, our normal changes almost daily. I might call on some of you for help with Joey while I go to Andi’s games, work, etc… We couldn’t get through this without your support. I don’t want my son to have “to live like this.”
Please keep posting positive messages here. Joey loves to read them!
P.S. If you are not following Raising2tweens on Facebook, you should!
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!
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?
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?
I have not had a new entry since late March and a lot has happened between then and now. A LOT – LIFE CHANGING EVENTS.
- Attacked by a dog
- Son diagnosed with a cancer-like condition, had a bone graph and was in a wheel chair
- 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.