The story of Chris
I have been diagnosed with a rare disease called langerhans cell histisytosis.
Langerhans cell histiocytosis is a type of cancer that can damage tissue or cause lesions to form in one or more places in the body.
6 years ago I was working on site (Trade) and while I was on the scaffold, my whole back went out on me. It was like someone just shot me in the back. Couldn’t feel my legs.
Luckily enough I had my phone with me so I rang my boss at the time and explained to him that something didn’t feel right.
I then phoned my wife and she came to the site I was working on with the paramedics.
After a struggle and heaps of the green whistle, trying to get me down the scaffold wasn’t as easier as they thought.
Overall they managed to get me down before SES was called.
I went into Westmead hospital with chronic pain. I was screaming and yelling.
The docs and nurses kept giving me morphine.
After about 7 hours they managed my pain slowly and told me to go on a pain management plan and to see a physio the next morning.
No scans were scanned that time.
I went physio and it kept getting worse.
I’d go home and was in chronic back pain. Pain like someone is stabbing my bones. Slowly.
After about 5 specialists/ scans/ biopsies and operations. they told me It’s an infection as they weren’t confident that I can have a rare disease called langerhans cell histisytosis.
On antibiotics for 2 years. 8000mg a day 7 days a week 2 years.
Throughout my course of antibiotics I was admitted into hospital again. More and more pain. Lost my job throughout all this, was newly married, and couldn’t believe I had to deal with this again.
Had 2 beautiful boys throughout the rehabilitation. Did a scan and they found 4 tumors. 3 in my spine and 1 in my pelvic bone.
Did surgeries on the sites and they still weren’t confident it was that disease.
2017 they finally diagnosed with langerhans cell histisytosis. I underwent 12 rounds of chemo.
Finished in July. 3 weeks later I went and did a pet scan to make sure I’m all clear and they found another Tumor in my right pelvic bone and my lower spine and shoulder.
Did surgeries on the sites.
While I was organising the treatment plans for the next step, under my shoulder I was in chronic pain. Stabbing pain. Spasm.
I did a cat scan and they realised it was another Tumor in my rib which cause my rib to brake.
4 weeks of radiation. I finally started chemo again in feb. 1 round down we wanted to do a base line pet scan. They discovered 3 more tumors in my bones.
Getting advice from an expert in Texas he told me to stick to the new chemo give it time.
Last week I had chronic shoulder pain. Went in for a scan and they found a new Tumor in my shoulder blade/collarbone which caused it to also brake.
Did radiation again for 3 weeks.
65 scans.
9 surgeries
Broke my vertebrae in my spine
Broke my rib
Broke my shoulder/collarbone
If it wasn’t for my wife to keep taking me to all these appointments and scans and late night drop offs to the hospitals I don’t think I would get far.
I get treated 5 days a week for chemo every 3 weeks.
It takes us up to 2 hours at times to get home from st Vincent’s hospital Sydney
Currently I am taking chemo tablets everyday