Circus Mojo Helped Heal My Son

Joey, 12, was suffering from unexplained pain again for the last month… Joey was diagnosed with Langerhans Cell Histiocytosis when he was 10-years-old. The cancer-like disease ate his hip bone away causing him to need a bone graft. Although no one was sure if he’d walk normally again, he can run, play and ride a bike like any other kid… most of the time. But then there are times that he is in such severe pain that he can only get around on crutches or in a wheelchair for weeks or even months at a time. Unfortunately it’s just a horrible side effect of this horrible disease.

joy wheelchair

So in early May the unexplained pain started again in his left leg. It eventually got so bad that he was on crutches again, missing school and using the wheelchair quite a bit. Joey became frustrated and borderline depressed. He was missing out on end of the school year fun, couldn’t ride his bike with his buddies or go do anything fun. His oncologist at Cincinnati Children’s Hospital Medical Center ordered test after test to make sure the Histio was not attacking again. Once that was ruled out Joey was able to start physical therapy again. He couldn’t even put pressure on his left foot at the evaluation that Friday. The therapist gave him a few exercises he did over the weekend.

The following Monday he headed to day camp at Circus Mojo in Ludlow, Ky. We knew about Circus Mojo because Paul, the owner, and Sharon, an employee, would often perform in the waiting room of orthopedics at Children’s Hospital when we were there. Joey enjoyed them so much that he had me schedule his appointments around their performance times. Joey and his buddy August headed to camp with Joey’s crutches and wheelchair in tow.

The Circus Mojo staff was awesome about accommodating our special situation. I spoke to Ginny in advance to make sure all would be okay. Paul and his crew made Joey take things slow and didn’t push him to do things that might be hard on his leg. He had physical therapy immediately after camp that day. He couldn’t stop talking about how fun camp was and he was able to get around a little better. The second day of camp came and he was able to do a little more. On the third day he could do even more but there was still one act he wanted to do but Paul told him was too dangerous if he still needed to use crutches. He had PT that afternoon and told his therapist he had to get stronger so he could do everything at camp. On Thursday he arrived at camp with one crutch and barely used it. He was able to do the act.

joey wheel

I drove the boys to camp on Friday. They were both so excited because they were going to learn even more that day and then perform for the families in the afternoon. I showed up for the afternoon performance and could see how excited all the kids were.

joey w circus friends

Joey actually climbed the silks and did what’s called the reverse diaper drop. He was able to walk on a wheel, balance all kinds of things, juggle scarves and so much more. It was awesome! I couldn’t believe this was the same kid who could barely walk at all a week ago. He couldn’t stop smiling.

joey whip pie

I truly believe that camp at Circus Mojo camp played part in Joey’s physical therapy. It gave him a challenge and a goal. He wanted to be able to participate everything. In order to do that he had to do his PT exercises and push himself. It also helped him emotionally and mentally. It gave him something to look forward to everyday. He was excited about learning new acts and seeing his new friends. Camp provided an incentive for him to push himself and get better.

The really awesome part was by Friday… he didn’t need the crutches or wheelchair at all anymore so Joey and Paul found another use for them.

joey balance

Wishing My Son Has a Broken Bone

joey super heroI hope my 11-year-old son Joey has a broken leg! Or maybe a chipped shin bone! Wait, maybe he has torn his meniscus! That would be AWESOME! IT WOULD SERIOUSLY BE THE BEST NEWS A MOM COULD WISH FOR!

I’m not crazy or one of those moms who wishes illness upon her child. I actually love my son to the moon and back and would be willing to take on any pain for him. Unfortunately, I can’t do that. Joey is no stranger to pain. He had ear infections, strep throat and many minor surgeries since he was only a few weeks old. In April of 2012, Joey was diagnosed with Langerhans Cell Histiocytosis causing him to have a lesion removed and a bone graft of his hip (Read about diagnosis). Well, for about the last two weeks he’s been complaining of knee and shin pain. It’s progressively gotten worse. So bad in fact that he is using crutches and missed the last two days of school.

LCH or Histio, is a cancer-like disease. It causes his white blood cells to go nuts. They think he’s sick so they go into action. Only there is nothing bad to attack so they end up eating his bones away. So my son is having severe pain. My immediate thought is ‘oh crap, his white blood cells are out it again. The Histio is back.’ My second thought is ‘Oh God, please let my son have a broken leg, a chipped bone or a torn meniscus.’ I find myself pleading with God to give him one of these ailments instead.

You see, if it is Histio, it won’t “JUST” be surgery, a bone graft, 15 weeks of a wheelchair, months on end of physical therapy, etc… It could be all or some of those things but it will also be chemotherapy. Chemotherapy: the use of chemical agents to treat diseases. That scares me to death! I’ve never had chemo and I’ve never discussed it with someone who has. All I know is what I’ve seen on TV. When I hear of chemo I think of extremely thin, sickly looking people with tons of tubes, loosing their hair and vomiting. Now my friend Aimee assures me this isn’t what it’s really like but it scares me to death.

One step at a time though, right?

So the first step was to see our oncologist, which we did today. The second step was to get x-rays. We did that and are waiting on results. Unfortunately x-rays probably won’t show Histio but they will show a broken bone!!!! Wohoo for a possible broken bone! The next step is an MRI. I am waiting to hear when that has been scheduled for. That will show us if it’s Histio. If nothing shows up there, we move on to a PET Scan.

So I am asking this of my readers tonight as crazy as it may sound. I know something is wrong. My son is in SEVERE pain. So this is what I ask of you. Pray and hope for a broken bone, a chipped bone or a torn meniscus. Pray and hope for something other than Histio because Histio is one bad mother… and because I’m afraid of chemo.

Seriously, if you pray, please pray a lot for my son to be well and strong and for our family as well. And if you don’t pray, send us some good vibes and positive thoughts! Joey and his 14-year-old sister love to read your encouraging comments so comment away!

Histio Awareness Month; Find a Cure for Super Joey

histio ribbonMost people never get to meet their hero. I was lucky enough to give birth to mine. My 11-year-old son Joey is an amazing young man. His white blood cells attacked and ate his hip bone away causing him to need a bone graft when he was only 10-years-old. He spent months in a wheel chair, then a year of physical therapy and in and out of Children’s Medical Center for a year. Eighteen months after diagnosis, he is training for a 6 mile hike to raise awareness and money for research for Langerhans Cell Histiocytosis.

Histio Hike Ohio takes place Sept. 27-29 at Shawnee Park in Ohio. Team Super Joey is made up of nine friends and family members. We are all looking forward to meeting other families who deal with LCH. It is only diagnosed in about five in a million so we don’t get to meet many other families who are dealing with Histio.

joey super hero

The other night I was tucking Joey in. He was wearing his Team Super Joey T-shirt. I’m not sure how we got on this topic but he said to me “mom, I’m not normal. I’m wearing this shirt because I’m not normal.” It broke my heart to hear that. I told him that no one is really “normal.” Everyone has something unique about him. I reminded him that he has beat this disease so far (it can strike again at any time) and that his courage can help other kids. He decided to do this hike to help other children. To make them realize that they can fight Histio with the right doctors, determination, and courage. I reminded him how he will be meeting others with his disease later this month. He smiled. He remembered that so far he has been one of the lucky ones. Others have lost their lives to this disease but Joey has been lucky enough to only lose a hip bone.

He then told me how he couldn’t wait to go to the hike and meet other kids, and adults, who understand what he has been through. He wants to tell other children they can get through this too. Joey wants to reach out to children at Children’s Hospital who have been diagnosed with Histio. He knows he was lucky enough to live near Cincinnati Children’s (one of the few hospitals that specializes in Histio) and to have his support system so close so he wants to give support to others who aren’t as lucky as him. He truly is an amazing kid.

histio hero

I’ve had other heroes in my life… There have been historical figures, athletes, actors, activists and others who I never met. Honestly, I never thought I’d meet any of my heroes. But now, I’ve been lucky enough to give birth to my hero. My son’s courage is amazing. He builds me up and gives me strength everyday.

I am asking you to show my hero your support by donating any amount in Joey’s name to the hike and help us find a cure for this cancer-like disease. You can also help spread the word about Histio by sharing the picture below and this post via email and Facebook since September is Histio Awareness Month.

histio

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Heroin Sucks; Support Rocks

I have to say I’m completely overwhelmed by the amount of hits my post 72 Hours of Heroin has had, as well as all of the comments that were made on the post. For days I couldn’t get on Facebook without it clogging up my news feed. Hundreds of people shared and it and 30,000 people read it! I wrote that post as my own therapy, just as I do all my posts. But this post became therapy for so many more people. Thousands of people.

The comments have been so hard for me to read and even harder to reply to but I know I need to for my own therapy. Dozens of people have told me their stories with heroin. My son died, my brother died, my sister is hooked, I found my cousin dead, my girlfriend won’t give it up… It was the same story with different names over and over. I was shocked. I can’t believe how common this drug is. I can’t believe how many people are hurting so bad that they are willing to inject a needle full of street drugs into their veins.

Some of the comments were from people asking me for advice. They have loved ones hooked on heroin and they don’t know how to help them. I wish I had the answers. Anyone who knows me knows that it’s in my nature to help. I will truly give you my last dollar for food, I will find you resources for therapy, medical care, housing, schooling, whatever you need. That’s just me. So seeing my boyfriend’s nephew die like this, I’m ready to take the heroin epidemic on and somehow win! Nicholas’ whole family is coming together to fight this. We want to educate others on what they can do if there is a problem but more importantly help people say no to heroin.

heroin

I don’t have a lot of advice yet but I am taking the time to research and learn. I am not a medical professional or counselor so please don’t take any of my advice as being from a professional. I am just a person who cared a lot about someone who lost their life to heroin. I will share what I have learned so far:

1. Take the time to learn about Casey’s Law. This law allows you to place a person of any age in rehab without their consent. There are some hoops to do this so read up and be prepared.

2. Understand that addiction is an illness. Just like any serious illness, it might take more than one round of treatment.

3. Look into your insurance and see what they will pay for regarding rehab.

4. If you have a known heroin addict in your life, get Naloxone (Narcan) and carry it on your person at all times. It’s not the easiest thing to get just yet but is legal, at least in Kentucky, for a non-user to have it prescribed to them. It can save an addicts life if administered quickly after an overdose. Just make sure you use it the right way.

5. Seek out a meeting. I know you are thinking meetings are for the user. Al-anon meetings can help the family and friends cope and learn to not enable the addict while still being there for them.

6. Prevent drug use by teaching your children early in life how to deal with life’s issues. Most drug users turn to drugs because something bad happened in their life that they just couldn’t or didn’t want to handle. Take your children to counseling, read books with them about coping, talk to them about different life scenarios and let them know that heroin will kill them.

7. Watch this video and share it with your family. It’s powerful.

8. Consider signing this petition to make laws stricter for dealers.

9. If your state isn’t charging the dealers for murder, share this story: Dealers Now Being Charged in Overdose Deaths, with your state prosecutor and legislators and urge them to do so.

10. Heroin deals take place everywhere – street corners, parking lots, restaurants, upscale areas, bad neighborhoods, etc. You might witness one happen. I am begging you to call 911 as long as it is safe. If you can report a dealer without putting yourself in harm’s way, please do so!

11. Share Nicholas’ story over and over again. It seems to be helping others. Many people have told me that they have used it to discuss the epidemic with their own children.

I will share more with you as I learn more. Keep sending me your comments and questions and I’ll do my best to respond.

I have one more thing to ask of you. We want your stories. A website is being developed to bring people together on this issue. It will be used to share stories, educate people and much more. We would like to share your stories on the website. You can post your story here or email it to chrisstegner@insightbb.com. We don’t have to use your name on the website. Just let us know if you want to remain anonymous. The stories can be about your struggles with heroin, how you are dealing with a loved one who is using, how you started using or anything at all that is associated with heroin. We might not use every story but we appreciate all that are submitted.

Always smiling

Always smiling

P.S. If you aren’t following Raising2tweens on Facebook yet, you should be. 🙂

Heroin Causes More Pain Than it Numbs

nick funeralMy boyfriend’s family (and I) lost a wonderful man this past week to heroin. You can read this tragic overdose story here. Nicholas Specht was always smiling. He welcomed me into the family from the first time we met. As far as we knew, he had been clean for several months since rehab. Nicholas grew up in a good town, with a wonderful christian family who cared for and loved him. He attended one of the best schools in the state. He spent the last several weeks volunteering at church with a construction project. He attended meetings every single day. We thought he was doing great.

But the truth is, he wasn’t doing great.  He was clean but still struggling. Nicholas had something tragic happen in his life a little over two years ago. His baby was still-born. This crushed Nicholas, as it would anyone. In a weak moment he turned to heroin. Heroin quickly changed his life. He found himself doing things he would have never done before to get this potent drug that eventually took his life.

I met him when he got out of rehab. We would chat a lot. I would tell him that he needed to stay away from his old friends, people and places where he could easily get the drug. I would tell him to call me if he felt the urge and focused on just saying no. But thanks to a comment on my post 72 Hours of Heroin that was made by a medical staff member who tried to save Nicholas last weekend, I realize I was focusing on the wrong things. I also realize that repeatedly telling my children to say no to drugs is not enough.

Think about it… I can’t imagine that anyone in their right mind wakes up one day and says “I think this will be the day I try heroin. I think I’ll put some crazy drug in a needle and shoot it into my body.” Only someone not in their right mind would do this. Something drives people to make this decision. Something horrible in their lives, like losing a baby. It may be chronic depression, a relationship breaking up, losing a job, feeling like a failure or something else that they just can’t cope with.

So in addition to teaching our kids to say no to drugs, we have to teach them that it’s okay to come to us with their problems. It’s okay to seek counseling. That no problem is too big or too small. We have to teach them how to cope with their problems. That has to start at a young age. We can’t just baby our children and tell them things will be okay. We have to teach them how to make it okay. There are tons of articles and books on how to cope with life’s unexpected issues. We need to encourage our schools to focus on teaching kids how to cope when they preach say no to drugs.

I stood at Nicholas’ grave yesterday with my 14-year-old daughter wrapped in my arms. I cried and begged her to always tell me about stresses in her life. I told her that I will always be open and will never judge her. I will get her the help she needs to deal with anything and everything. I told her my love for her is stronger than any problem she might have. I made her promise me that she would never to turn to drugs to cope with her problems. I hope and pray she keeps that promise. My 11-year-old son and I will have the same conversation tonight.

Nicholas died just a few weeks after his 30th birthday. He turned to heroin in his late 20s. It can happen to anyone at any time. Heroin does not discriminate. It is cheap and easy to find. I am asking all of you to have this conversation with your children, grandchildren, nieces, nephews, friends and loved ones. Have this conversation no matter if they are 10 or 40.

Please share your thoughts and comments here as our family truly appreciates reading them. And please share this with your family and friends. Heroin is an epidemic an education is the only way to crush it.

heroin

Find a Cure for Joey

super joeyMy 11-year-old son Joey suffers from Langerhans Cell Histiocytosis. His white blood cells attacked his hip bone and ate it away causing him to need a hip bone graft and spend several months in a wheel chair. He’s been in and out of the hospital for the last 16 months. This disease could attack again at any time. There is no cure. There is very little funding for researching. You can help us find a cure for Joey and the thousands of other kids this disease affects.

My son is training for Histio Hike Ohio that takes place at the end of September. He plans to do the six mile hike. He must get his leg and hip stronger to be able to participate without pain. He walks, rides his bike and does his physical therapy exercises everyday. He is looking forward to meeting other kids with Histio and being able to talk to them about what he is living with and what he’s been through. This hike has given him something to look forward to and an incentive to work hard and get stronger.

There are two ways you can show Joey your support and help find a cure for his disease.

1. You can sponsor him in the hike by going to this site. We truly appreciate your donation whether it’s $5 or $500.

2. You can buy a Team Super Joey T-shirt (art below). Shirts cost $15. They come in men’s and youth sizes and should not shrink. They are super soft light-weight Ts. Joey’s 14-year-old sister designed the shirts. You can email me your T-shirt order (gina5620@gmail.com) or put it in a comment on this post. If you know me personally, you can give me the money or anyone can pay via paypal by entering my email address. We will ship T-shirts to those out of the Greater Cincinnati area at no extra charge. Proceeds will be given to Histio research.

T-shirt art - the word "Team" will be above Super on the T-shirts

T-shirt art – the word “Team” will be above Super on the T-shirts

It would be amazing for Joey to see people in the community, family and friends sporting these T-shirts in support of him.

Please help us find a cure for Joey and all the other kids who suffer from this rare disease (or rarely detected) by making a donation and/or buying a T-shirt. We truly appreciate your support!

Please leave a note here in encouraging Joey in his training for the hike. He loves reading your words of encouragement.

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