Finding Hope in Hocking Hills

my family

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.

Rock Formations at Hocking Hills

Nick on a cool tree

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.

Nick holding up Old Man’s Cave

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.

Under the waterfall

The view from on top of the waterfall

Enjoying the moment

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.

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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.

Team Super Joey

I have told you before that my son is the best superhero I know. He’s amazing. He deals with chronic pain and knowing that he has this rare and crazy disease (LCH) but still finds a way to smile every day, stay positive and make all of us laugh nonstop.  I bet the one thing that would make him happier than anything else in the world is to hear that they found a cure for Histio. We can all help make this happen!

Joey is one of the lucky ones. He had a single bone lesion. That means his cancer-like disease caused his blood cells to attack his hip bone, eating it away. He had a biopsy and bone graft, was treated with steroids, was in a wheel chair a while and went to physical therapy. Boom! He was cured (well sort of – he’s in remission and a lot of pain). He knows the disease can come back at any time and there could be a new lesion but he knows the odds are in his favor that if it even returned, it would be in the bone again. Histio can also attack your skin or organs but luckily Joey is at low risk for this.  Kids go through chemotherapy treatments and bone marrow transplants because of this scary disease. Moms and dads lose their children to this disease when it attacks the organs. No one should have to die, have an organ transplant or a fake bone in their body because of this rare (or rarely diagnosed) disease!

Unfortunately, Histio doesn’t get a lot of funding for research. Without research, they can’t find a cause. Without a known cause, they can’t prevent it. Without research, they can’t find a cure. Without a cure, people will continue to live with this scary disease and some lives will be lost. So now you are wondering how you can help, right? I’m going to tell you.

Team Super Joey is going to participate in the Histio Hike Ohio in September. Our team is currently made up of my incredible son Joey, my amazing daughter Andi, the fabulous Nick and me. We have set a goal to raise $1000 for Histio research. You can help us reach that goal. Any donation, whether it’s $1 or $100 will help us reach our goal and help Histio research. Also, if you are interested in participating in the hike and being part of team Super Joey, just leave a comment on the blog and I’ll contact you.

I hope you will consider helping us find a cure for this horrible disease. Joey, Andi and I want you to know how much we appreciate every donation and your constant support.

P.S. if you aren’t following Raising2Tweens on Facebook, you really should be!

I Can’t Live Like This

“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.”

Hot tub therapy

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!

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My Son is a Superhero

Most superheros fight crime, rescue people from burning buildings and fall in love with the one woman who is always finding herself in a bind. My son Joey hasn’t done any of that but he’s my superhero. Joey can walk and fight LCH all at once. In my book, this makes him a superhero. My 11-year-old son has been through more in the last year than any adult should have to go through, let alone a kid. He was diagnosed with LCH on April 23, 2012. He had a bone graft on April 25, 2012. This was all after a two month fight to find out what was causing the severe pain and why he could no longer walk on his own.

Joey was in a wheelchair for three months, then a walker and then crutches. We were told he may never walk again. He did. Not only did he walk after only three months, he eventually was able to ride a bike, roller skate, climb Stone Mountain, climb a rock wall and run with his friends. He beat this rare disease that ate his hip bone away.

As we were coming up on the one year anniversary of his surgery and being Histio free, I was thinking of ways to celebrate. I was considering having a party with all his friends and family. That didn’t happen on April 25th though. Instead, we were sitting in the hospital with leg pain.

Joey started with pain in his hip and shooting pains down his leg again in early April. It got so bad that he ended up on crutches once again. It progressively got worse and he ended up in the hospital. During this 9 day stay over a two week period, Joey was put under three times, received three injections, had three MRIs, two sets of x-rays, an ultrasound and was poked and prodded nonstop all while being in excruciating pain.

Luckily the Histio is not back. We’re pretty sure the hip was irritated and inflamed and that the steroid injection, combined with acupuncture and massage helped calm everything down. He still has some pain and isn’t walking quite right but we think with continued treatment and physical therapy he should back to normal soon.

Through all of this, Joey has managed to stay in fairly good spirits, laugh and make jokes (ask him about puddin’ some time), keep up on all his school work and stay determined to get better. I think that makes him way more of a superhero than some guy who got bit by a spider. Plus he had an amazing team of sidekicks – Dr. Neil Johnson, Dr. Joel Sorger, Dr. Goldschneider, amazing nurses (Roxanne, Kelly and Judy) and all the amazing staff at Cincinnati Children’s Hospital Medical Center. They all have superpowers of their own. He also had support from those who didn’t realize his true identity as a superhero until seeing him fight through this (you know who you all are but I have to give a big shout out to The Amazing King Pudding Face Nick Stegner).

My superhero and one of his favorite friends.

Joey has been out of the hospital for a week now and is attending school. He is also busy with doctor visits, acupuncture, physical therapy, exercises at home and getting that leg stronger. He may have just been pretending from age 2-1/2 to 8 that he was a superhero but he no longer has to pretend. Joey will always be my superhero.

Joey loves seeing your notes of encouragement so be sure to comment here.

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Whirlwind Washington D.C. Trip

Vomit, broken down busses, bathroom lines 40 people deep and stench throughout… That is the quickest and most descriptive way to describe a bus trip to Washington D.C. with 300 eighth graders and their parents. Don’t worry though. It does get better. Many schools take a 7th or 8th grade trip to D.C. so I thought I’d share our experience and give you a few tips.

Most of Bus 6

We boarded bus 6 at 10 p.m. Wednesday. I have to admit that I was dreading this. I couldn’t believe we were driving through the night. It definitely was not a walk in the park but it wasn’t as bad as I expected. The kids on our bus were very quiet and I was able to get some rest. We did have to stop once because a child on another bus vomited (on a teacher!). A few hours later we stopped on the side of the road because one of the busses broke down. We had to move all of the people from that bus on to the other busses, filling every seat we had. Some children actually slept on the bus floor because it was more comfortable.

at Gettysburg

We finally arrived in Gettysburg where we had breakfast and were able to change clothes for the day. Unfortunately there were only four bathroom stalls for the women and at least 150 females. It took FOREVER to get everyone changed, teeth brushed, etc. Plus we were already behind schedule because of the bus breaking down. We missed the first thing on our itinerary. We visited Gettysburg and even climbed an outlook tower. Our tour guide told us the story of Gettysburg, making me feel like we had actually been there.

Future Pres and Vice Pres

We then headed to D.C. where we visited some of the Smithsonian Museums. I loved seeing the dresses of the First Ladies and the girls had fun pretending to be the President. Througout the time there, we also saw the outside of the White House, toured the Capitol, the Arlington National Cemetary, visited the 9/11 Memorial at the Pentagon, the Vietnam Memorial, the Martin Luther King Memorial, the Lincoln Memorial and many other memorials. I have to say I was most touched by the Vietnam Wall and the 9/11 Memorial. We did not get to our hotel until about 10 p.m. each of the two nights we stayed there. The hotel was absolutely beautiful and the beds were extremely comfortable.

Changing of the Guard

FDR Memorial

Having fun at Air & Space

9/11 Memorial at the Pentagon

We had breakfast at the Old Country Buffet and Hard Rock Cafe. Dinner took place at Uno’s and a seafood restaurant. They all setup buffets. Lunches took place at mall courtyards and the FEMA cafeteria. The food was TERRIBLE. The bacon at the Hard Rock was so salty that I could not eat it (and I love bacon). Fruit and vegetables were very limited. The pizza at Uno’s was tough and the pasta was chewy. The seafood restaurant was actually pretty good BUT we had many kids who would not eat seafood and several vegetarians. The only choices for them included some questionable looking chicken, french fries, a plain salad and fruit. I don’t eat fast food or much friend or greasy foods so this actually caused an upset stomach for me. Due to the amount of people we had and the short amount of time, the kids sometimes only got as little as six minutes to eat. A lot of the parents agree that too much time was spent driving to restaurants so I will offer some suggestions for this below.

We left around 8:30 p.m. to head home. Another child got sick on the bus (luckily not our bus). Another bus could not be turned off because they weren’t sure if it would start again. At rest stops some parents would complain that the kids would not be quiet and no one could sleep. Luckily the kids of bus six were very quiet and I was able to sleep the whole way home. One mom was so sound asleep that she slept through all three bathroom breaks. We arrived back at the middle school at 7:30 a.m. I was so excited to be home. I went to sleep around 10 a.m. and slept until about 3 p.m. I was so thankful to be in my own bed after spending the better part of two weeks at the hospital with my son and then sleeping on a bus and in a hotel.

Although some of this probably sounds terrible, I am so glad I was able to go. I bonded with parents I had never met, became closer with parents I’ve known for years, got to know my daughters friends better and got to be with my daughter on this memorable trip. I was able to learn a lot about our history and see some pretty cool things. I also watched my daughter form new friendships with kids she didn’t know that well before this trip.

The girls in D.C.

Future Pres and Vice Pres

So to the parents of future 8th graders at HMS and all the parents from other schools who might go on a trip like this… here are my tips for survival:
1. Bring COMFORTABLE walking shoes. You will walk more than you can ever imagine so do not wear sandals, clogs, flip flops, heels, dress shoes or anything other than comfortable walking gym shoes.
2. Pack fruit, protein bars and other healthy foods that travel well. You will not eat well or on a regular schedule so save your stomach by packing a few healthy items.
3. Suggest to your trip planners that they have the hotel serve a buffet breakfast in shifts so that time is not wasted traveling to restaurants in the morning. This kept putting us behind schedule and we would have to rush.
4. Look into having boxed or packed lunches provided by a local caterer or the hotel. The lunches could be eaten on the bus while traveling or outside at one of the many park areas. This would save time and allow for healthier choices.
5. Bring sunblock. You are outside most of the day. We had perfect weather – 70 and sunny but some still got too much sun.
6. Invest in a nice neck pillow for the bus ride. I picked up a $12 one at Target. Although it was better than nothing, I wish I would have bought something nicer.
7. Suggest to your trip planners that they make sure the bus has outlets to charge your phones. I was away from a charger for over 24 hours so my phone died each day. I wasn’t able to take pictures or check on my son as often as I would have liked.
8. Get a row of seats to yourself on the bus if possible. This allows more room to stretch out.
9. Sit in front of the shortest kid possible. The seats recline but you might end up with knees in your back the whole time.
10. Take an iPod. Listening to my iPod helped avoid listening to whispers, snoring, etc.
11. Be involved in the planning if you can. Due to a breakdown in communication, we did not get to attend the Holocaust Museum even though most of our group wanted to go there.
12. Bring a drawstring backpack. Many of the buildings won’t allow full size backpacks and your stuff has to be searched every where you go.
13. Parents: go on the trip with your child if you can. It’s an amazing experience.

I know many of the 7th grade parents at HMS have to decide soon if they are going to attend with their child. Please listen to tip number 12. I don’t think you will regret going but you might miss out on an amazing experience with your child if you don’t.

Do you have any tips for traveling with your child’s class?

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Home Sweet Home

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!

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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

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.

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