If you are looking for a wake-up call to do what is important to you. Let this be the ONLY post that you read of ours until the end!
This post is very different than any of my previous articles, it has nothing to do with travel, but as many of you have been part of our travel community over the years, I wanted to use this platform to help share how CRMO (Chronic Recurrent Multifocal Osteomyelitis) has impacted our lives and bring awareness to maybe help other families dealing with this rare disease.
Even if the 2020 COVID pandemic would not have occurred this year, our family would have stayed close to home anyways. Our focus and love have been helping our son Luca get better and I am finally ready to share our story.
Luca is a CRMO Warrior!
Please note I am a parent and not a medical professional, please seek medical advice with your doctor. This is our journey with CRMO.
What You'll Find in This Post
Start of the Battle
Kicking off January was the hardest month of my life. I typically share everything about our lives and this one is tough to share, and I wasn’t even sure if or when I wanted to tell you all. But, at the time I documented the details because there was nothing else I can do but pray and write.
We went into a doctor’s appointment after Christmas break to take Luca back in for a pestering collarbone issue. He was in so much pain that he couldn’t sleep and it was uncomfortable for him to do anything active. His left shoulder crunched up to his ear, his left collarbone was swollen and we didn’t know what was wrong but knew this wasn’t going away.
Luca had been dealing with this on and off for the past four months (since September 2019). We thought he had a sprain or fracture and they may need to re-break his collarbone and he’d be wearing a sling for a few weeks.
The Fear of the Unknown
Well, things escalated quickly and within 2 weeks Luca had an MRI, bone scan, x-rays, multiply blood tests and visited specialists to try to figure out what was wrong. Trying to keep the spirits up after his bone scan, Luca cranked up the song – Radioactive by Imagine Dragons on the way back from his bone scan! What amazing and positive spirit this kid has.
His blood level was out of sorts and his x-rays were showing shadows. So after all the tests were complete we had to wait an excruciating 10 days of not knowing what he had. There was the possibility of our Luca having cancer, a tumour, bone infection or something else called CRMO – Chronic Recurrent Multifocal Osteomyelitis.
I was praying for my son to have CRMO – a chronic lifelong disease, it seems so wrong but with the other options, it could have been that was the better outcome because at least I knew it wasn’t life-threatening and there was a chance for remission.
I don’t know what to tell you other than I wept, I cried, I sat still without thoughts, I was angry, I was scared like I had never been before in my life, I wanted to fix it, but most of all I wanted to take all his worries away. It’s not fair for a 10-year-old kid to have to worry about things that should be adult concerns.
I’ve had tough days in my life, but these 10 days are almost indescribable and unless you are a parent who has gone through this before I’m not sure I can even do it justice to describe the pain, fear, sadness, heartache, emotional rollercoaster you go through. I just wanted to switch places with him and take all his pain away, but I couldn’t.
I had to surrender to LOVE, not to give up, and that it was out of my control.
We finally went for our follow-up specialist appointment at the Kelowna Cancer Clinic. Luca turns to me after we arrived at the clinic and asks “Mom, do I have cancer?” I stumbled with my words “No, um maybe, we don’t know… but whatever it is WE GOT THIS.” I was trying to protect him and not have him worry for the 10 days that had eaten away at my soul. So, for 45 minutes our 10-year-old boy waited to find out if he had cancer.
Part of the process to be able to diagnosis CRMO is to eliminate other types of illnesses including cancer, bone infection or tumour. It’s a ‘diagnosis of exclusion’. We found out that day that is was highly likely that Luca has CRMO and that he did not have cancer or a bone infection. Initially a huge sigh of relief after eliminating all other life-threatening conditions, but CRMO doesn’t come without its own complications.
You see Luca is now officially 1 in a Million. CRMO is an extremely rare disease which usually diagnosed around the age of 10. There are approximately 30 – 40 children that have CRMO in Canada.
At this point, we honestly didn’t know what was next for Luca, what treatment plans look like or how our lives will be impacted by this. This was all new to us, we had a battle ahead of us. But, we are strong, we have support from our family/friends and we are fearless.
Our next step was to see a pediatric rheumatology specialist at the BC Children’s Hospital but this appointment wouldn’t be until May.
Since CRMO is so rare, we also opted to start the process to get a second opinion through Best Doctors. This benefit was part of our work benefits and provides access to doctors around the world that are would have dealt with this before since our local doctors had never seen this disease before since school.
We released all medical records to Best Doctors and met with the doctors to review Luca’s file. We were able to have access to doctors in New York and Philadelphia who have treated children with this disease before. On April 16th, we received the final report summary concluding that Luca did have CRMO.
What is CRMO?
CRMO is a rare disease that results in chronic inflammation of the bone. It is an autoimmune disease that attacks the bones and causes swelling. It typically involves joint pain and swelling in one or more areas which occur in recurrent episodes. These symptoms can significantly impact daily life for a typical kid.
Since CRMO is so rare, there is limited information, research and details on the longterm impacts of the disease. Currently, there is no cure for CRMO and the goal is remission.
- Pain in a bones
- Usually swelling of bones (but not always), maybe red or warm to the touch
- May have a fever
- The knees, ankles, wrists, clavicles and shoulders are the most common areas. Sometimes occurs in the jaw bone.
- Can come and go for periods of time with flare-ups.
- Can cause so much pain that wakes children at night
Luca had flare-ups and pain in his left clavicle and no other joints. These lasted from 1 to 3 weeks at a time. During flare-ups, it would swell up and become red and appear like he had a golf ball size swelling underneath his collarbone.
He had difficulties with being able to put his shirt on over his head, jackets, pain in carrying his backpack and unable to lift things over his head. He wasn’t able to rotate his head to his shoulder. He has no fever, and no other areas were affected. He would wake in the middle of the night and describe it to be like really bad growing pains.
From the time Luca was diagnosed in February, he stopped all sports, school gym class, and we tried to reduce his pain with over the counter Naproxen (Aleve) as directed by our family doctor.
In May we had the first initial visit with the pediatric rheumatology specialist in Vancouver at the BC Children’s Hospital. We were now dealing with a COVID world, and so we were so grateful that we could still go to this appointment and figure out what our treatment plan was.
Luca started Naproxin 250 mg twice daily and would then go for Zoledronic Acid treatment on May 13. Zoledronic Acid treatment is a treatment done by the endocrinology department and basically helps the bones strengthen.
We would then wait to see how Luca would react to both the treatment and ongoing medication.
Note: All treatment plans can be different depending on the situation of each child. This is was the treatment plan that was suggested for us.
Since June, Luca has had little pain in his left clavicle and the swelling has subsided. As much as he could, he has returned to his regular activities with no pain. YIPPEE! This has been great news for us and let Luca be a kid this summer.
We had our follow-up with the pediatric rheumatology specialist in Vancouver at the BC Children’s Hospital and they concluded that Luca has responded well to the medication and the zoledronic acid treatment.
At this point, he doesn’t need any further treatments, and our goal now is to slowly get him off his medication or find the sweet-spot for dosage that allows his pain levels to be reduced without impacting his kidneys.
Since CRMO doesn’t go away we will continue to have follow-ups with the pediatric rheumatologist specialist and monitor his pain levels. Based on how things happen in the future he will potentially have more Zoledronic Acid treatments but it will be based on clinical diagnosis from the specialist. So no ongoing MRIs for Luca, at least for right now.
He has been given the green light for returning to ALL sports that he wants to participate in, go back to school with no concerns about a compromised immune system and get back to being a kid. We’ve just learned that we need to check-in on how his body is feeling and if he is starting to get some of the pains again.
We will continue to see how things go and keep a close eye on him. But, for now, we are grateful for how well he is doing and able to be a kid again.
Send us positive vibes and we will figure out the rest!
Reasons WHY I wanted to share this personal story:
First, CRMO is rare, misdiagnosed, and still somewhat unknown. So even if I only have a small voice with my readers or show up on a google search results and help one family find out about CRMO, then it will all be worth sharing our story. CRMO Awareness is key to helping these kids who are suffering from pain.
Secondly, let this be a reminder not to take your kids for granted. Spend time with them, focus on being a family and appreciate all the little things in life together. Don’t wait until they are older to travel with them and build memories with them. Travelling as a family does this for our family, it connects us and will connect us for the rest of our lives.
During those 10 days of the unknown, my husband and I looked at each other and were honestly so grateful we had taken the leap of faith and travelled the world for a year. We never had any regrets about it, but at that moment we were so happy we followed our hearts and DID IT! We knew that regardless of Luca’s diagnosis, we had lived our lives to the best of our ability and shared it with Luca the way we thought was best for him. Don’t wait for SOMEDAY, please don’t… it isn’t guaranteed.
We are so happy that we stopped sleepwalking through our lives 4 years ago. We have actively been aware of our lives and living them to our fullest.
Drastic things like your child’s health can hinder your ability to travel as free as you would like. CRMO is NOT going to stop us from travelling, we just need to figure out how to make adjustments to make it happen!
Because I can’t sit idle, I’ve set up a fundraising campaign with Mabels Labels for the CRMO Foundation. If you need any labels for your kid’s school, sports or household labels are a great place to get them. We actually used all these labels for the kid’s clothing items when we travel.