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Michael was diagnosed with Relapsing Remitting MS in July of 2010. For the first four years things were okay. He could deal with the relapses when they occurred and his MS didn’t seem to interfere too much with his life and work. However in 2014 he moved to having Secondary Progressive MS and his physical decline, at only 33 years of age, became a real worry.
Michael feels that his MS was probably harder on his parents than on him.
No parent should have to go through seeing their child’s health deteriorate, as with MS, and it doesn’t seem to matter how hold that child is.
Michael wrote to many clinics and was always turned down for not fitting the criteria for Clinical Trials. He feels it was because he had the Secondary Progressive MS, and most trials are with for Relapsing Remitting. It seemed to Michael that HSCT was the best solution for him. At this stage what he wanted was first and foremost to stop the frightening progression of his MS.
“HSCT is not without its risks” says Michael. The worst risk is of course death. And while death is still a statistically insignificant risk, it still happens. Not long before Michael’s visit a woman had passed away undergoing similar treatment.
Michael first looked at going to Russia, however there was a two year waiting list, and Michael did not feel he could wait that long.
The cost of treatment in Singapore can cost up to $120,000, which doesn’t include the airfare and accommodation. Michael feels that he cannot sing the praises enough though of the top notch care that he received.
Michael traveled with his parents in 2017 to Singapore, where the hospital told them what to expect and all the consent forms were signed. All up he could expect to stay for 3 months in Singapore. His father or his mother was there with him during his stay, so he always had some company.
I’m lucky, even the specialists were surprised at how quickly I responded to treatment.
During the first month Michael received a chemo trial, to see how his body reacted to the chemo. He also underwent stem cell release injections and had his stem cells harvested.
During the second month he was admitted into the hospital and kept in a highly controlled environment for two weeks while he received his chemo treatment. He feels fortunate that he didn’t have any severe adverse reaction to the chemo, other than extreme nausea. The last day of the chemo treatment was the worst, but Michael felt he had had worse days with his MS.
After the chemo treatment he had a day of rest before his stem cells were re-introduced. This procedure took less than a half hour. After that it was a ‘waiting game’. Michael was released from the hospital under very strict conditions and was monitored regularly. When he ventured out he wore a facemask and he was given an ear thermometer to check his temperature regularly.
After three weeks Michael received permission from the doctor to fly home. Although he needs to build some strength in his body now, Michael was very happy to be heading home!
Steve Keys looks like a regular Kiwi guy. He sounds like a regular Kiwi guy. But he’s a man with a couple of problems: one he is happy to have, the other, well, perhaps not so much.
Duncan Grant got accepted for Mastering Mountains grant in 2023, he set some big goals! There were some highs and lows, read his story here.
