Helping Kevin Boyne

Kevin Boyne is a pilot and this is his story. His girlfriend Charyl has been by his side though this. 
October 1st, Kevin was seen in the ER for worsening flank pain. He was sent for a CT  in the ER. The Doctor came back and told us they thought he had cancer. 
That night a second scan was performed and then he was told the initial diagnosis was wrong. The doctors thought it was a condition called Aortitis / Vasculitis ( inflammation of the blood vessel and the aorta) This condition was causing what looked to be an small aortic aneurysm and the pain Kevin was feeling was due to the inflammation of his blood vessels throughout his body. He was giving pain killers and started on blood thinners to stop the chance of having a blood clot. He was assigned a rheumatologist and she assured him it was not cancer and that his condition could be managed, with a few lifestyle changes and medication. 
He was admitted to hospital, and over the next 2 weeks he was poked and prodded, he had biopsies taken of his lungs as there were nodules noted in both, which were all negative. He had hundreds of blood samples taken. Although he was not getting better, he wasn’t getting worse either. 
On Oct 16, he was discharged from the hospital and sent home, he mentioned to his doctor prior to leaving , the back pain he was having wasn’t getting any better. He was told it was because he had spent the last 2 weeks in bed and over time and with movement it would resolve. 
Over the next 2 weeks the back pain continued to worsen.  More medications were being added to control the pain. 
He had an appointment on October 31st to have a biopsy done of the tissue near the Aorta and Inferior Vena Cava, at the site where the aneurysm had formed. They wanted to be sure the steroids and treatments for the Aortitis would be effect, so far all the blood work had yielded little to no results. He was told he would have the pathology results within 10 days to 2 weeks  
He continued to decline, worsening back pain, difficulty standing, difficulty walking. He called the University and emailed his specialist. No response. No further testing had been scheduled, however a CT was planned for March 2022.
On November 5th, all of his medical information was sent to the Mayo clinic in Rochester, MN.  
On November 10th, Kevin was called by the Rheumatologist at the Mayo, he was told that this was NOT vasculitis and or aortitis and that it was most likely cancer. 
On November 16th, he flew to the Mayo Clinic, he was seen by a multitude of specialists, in a flurry of activity to try and find the primary cause of this. 
On November 23rd, he was called by his specialist in Edmonton and told that the pathology results were negative and she was considering sending him to an oncologist in Edmonton and that he would be booked for a CT.
On November 25th, he was informed his condition was indeed cancer, a rare form in fact, it was Retroperitoneal Soft tissue Sarcoma. A large mass in his abdomen surrounding the 2 main vessels, the aorta and the inferior vena cava. The Cancer had also destroyed most if not all of one of his kidneys. It had also been detected in his spine. 
He returned to Canada on December 3rd, by this time he could no longer walk 50ft, he could no longer stand for more than few seconds, all tasks required help or had to be delegated to others. The pain medications where always being increased, with new meds for pain being introduced daily. He began radiation 4 days after Christmas, it was impossible to even lie on the radiation table without excruciating pain for the first few treatments. 
He complete 25 rounds by Feb 2, 21. Following radiation he was able to walk again, lie flat, stand and was able to begin to do little house hold chores. He was able to reduce th
He was told 25 doses of radiation was all his body could handle and that the radiation would not be able to be used again as it would damage his spinal cord. 
And the search for the surgeon began....... 
Before the entire story could even be relayed to the surgeon in Edmonton, he deemed it was too difficult for him, and opted out.  Referrals were then sent to Vancouver and Toronto, in the middle of February , Kevin was informed Toronto and Vancouver also declined, due to the difficult nature and location of the tumour. 
A referral was then sent to the Mayo. This week he was declined for surgery
We know that surgery is the ONLY cure for sarcomas. Radiation and Chemotherapy only buy time. 
So now the real fight begins !!!  Referrals are being sent to leading Cancer facilities all over the world, however each referral that is sent is approximately $2500 - $4000. The costs are high because the chart and diagnostic images have to be reviewed by a Surgical Oncologist, Orthopaedic Specialist specializing in the spine, Vascular surgeon and Neurologist to ensure IF a surgery goes ahead there will be no damage to the spine. 
Alberta Health does not pay for the referrals as it is the “patients directive” and therefore the costs  are to be paid by the patient.
2 referrals have gone out this week. One to Israel and the other to France. Next week another 2 referrals will be sent, to the United States and Germany. 
Without surgery, Kevin has limited time. Surgery is the only option. He can hope for a clinical trial, but due to the nature of his cancer ( Sarcoma’s make up about  1% of cancers) there are not a lot of trials. Most trials are for children or post surgical patients, which he does not qualify for. Chemotherapy will only be used to buy him time, but the oncologist in Edmonton has told Kevin this is a palliative measure. 
Our best hope it to continue to find a surgeon, but we can’t do that without sending out costly referrals. 
To date the family has paid close to $70,000 for diagnosis and consultations.  This is money that the government will not be reimbursing.