The last few weeks have been very emotional – happy, sad, reflective – for my family. It was this time last year that we were trying to find out what was wrong with Joey. He was in extreme pain and we were not getting answers. He went from having pain similar to a pulled muscle to not being able to get out of bed within a few weeks. It all started sometime in March but it wasn’t until the end of April that we were told he had Langerhans cell histiocytosis (LCH). Prior to diagnosis, I already had Joey using crutches to get around and the elevator at school because it was obvious that something was seriously wrong.
I remember trying to take him on adventures over spring break. He would try to go on short hikes with us but would end up in too much pain to continue. Last Easter he had tears as he tried to hunt for eggs with his cousins. He could barely maneuver through grandma’s yard. He stopped riding his bike and walking to the park or local candy store with his friends. He would come straight home from school and just lay in his bed or on the couch for the rest of the day. This went on for weeks. I was so frustrated. The initial tests didn’t show anything and the doctors weren’t really pushing for answers. “Growing pains” is what they kept telling us. My response “growing pains don’t make you fall to the ground when you try to get out of bed!”
Once he was diagnosed at Cincinnati Children’s Hospital, things moved quickly. We were given the news on a Monday and he had a biopsy and bone graph of his hip on a Wednesday. We would never know our old “normal” again. Joey spent several months in a wheel chair and couldn’t finish the last two months of school. Then he moved to a walker, crutches and then finally on his own.So we have just past the time when all the pain started one year ago and we are quickly approaching the one-year anniversary of his surgery. There hasn’t been a day that has gone by in the last year that Andi, Joey or I haven’t thought of Histio and the way it has impacted our lives. But it’s been more evident in the last few weeks, especially as we celebrated Easter and explored Atlanta on Spring Break.
Joey ran through my parents’ yard collecting his eggs. He had no issues getting up and down the hill. In Atlanta, he hiked down Stone Mountain and played on all the rocks. He then did an obstacle course and rock climbed. I sat on the mountain for a while watching him goof around with his sister and friends. They posed pictures acting like they were falling off the cliff and jumped from one rock to the next. I felt tears build up in my eyes and eventually run down my face. Could this possibly be the same kid who couldn’t walk up the street, was in a wheelchair less than a year ago, who needed a stair lift to get out of the house and couldn’t get out of bed on his own? Is this really the child who has a rare cancer-like disease and was told only a year ago that he might not be able to walk again? Could this be the boy who has a “fake” hip?You know, although it was definitely Joey climbing all over that mountain, it wasn’t the same boy from a year ago. That boy, that sick little boy whose world had been turned upside down in an instant, that boy who was sad and helpless, that boy was gone. The boy I watched climb the mountain was a brave, healthy boy who overcame a major challenge that was thrown his way a year ago.
My family will never know our old “normal” again but we have definitely found our new normal together and we will continue to do so as new challenges are thrown our way.
Since the one-year anniversary is coming up, Joey will have new scans, blood work and tests next week. This is a proactive measure since we don’t want the Histio to sneak back up on us. I don’t think that will be an issue though. I think Joey, his sister Andi and I will be celebrating Joey’s clean bill of health next Thursday night!
The kids and I would love to read your thoughts about all of this and hopefully some encouraging words here in the comments.
I could never be happier than I am reading the good news.Ive followed your journey and held you in my prayers.Keep up the great work and know you are my heros.
WONDERFUL piece and Joey is ALWAYS in my prayers!!!
I have tears in my eyes reading this blog. For multiple reasons, I remember getting the phone calls and visiting and the hurt I felt for you and feeling helpless myself. The amazing strength you showed then and still today are one of the many reasons I love you! I am so happy and anxious to hear about next week!! Joey sure has come a long way in such a short time ❤ it is great to see him be a child again and play and run.
I hate LCH. My daughter had it when she was 15 and removed a LCH brain tumor. So far she is in a full remission from LCH. She is 22. She had all the bone scan, blood test, MRI and everything during X mas when she was home for the holidays. It was great as far as we know that she is in a full remission.
I do hope your son beats this LCH thing and do not have to deal with it in the future.
So happy to here she’s in remission!
Wow. You know that when reading this I was balling my eyes out Gina. I remember when you first posted about Joey being in pain and not being able to do the normal actives he was used to doing, was very upsetting to me. You right away took him to see the doctor to find out why. Then the doctors said it was growing pains. His smart, strong, brave and heartbroken mother knew that she had to get a second opinion and go to the specialist to find out what was really gone on, because growing pain could not be the answer. Thank God you did. You now know why and you can move forward, as you say, “with your new normal.” In my opinion, you and Joey are both heroes. Him for his fighting his battle of health and being so brave . And you for speaking for your child’s need to be seen and not walking away without a clear answer. Your story hit very close to home for me. Not only because your son and my son are good buddies, but your story helped me through a health scare with my daughter. When I found out she was going to have to have open heart surgery at 22 months old, I was so scared. You gave me the strength and ability to ask question and to keep asking them until I was satisfied with the results. Now today, one year later Joey and Ariana are going for their one year follow soon. I am so nervous. But once again, your story today is giving me strength. Thank you. I am praying for them both to have clean bill of health forever. If you decide to extend your celebration to friends, we would love to be apart of it.
We will when we finally have the celebration!
Here’s hoping Joey continues to thrive! You are all brave, and it sounds like you make a wonderful, loving family! All best, Nancy Golden (friend of Nick Stegner). p.s. Gina, I think you know my sister, Mary Beth Golden. How did you two meet? Did you go to Highlands?
Mary Beth Ganote, that is.
yes, I have known your sister for years. She’s a wonderful lady
Nick and I or your sister and I? I went to NCC. Nick and I met at the FT. Thomas Education Foundation Dance. I’ve known Mary Beth for years. I think we met in MOMS Club. Thanks for the note