We live in an amazing community of people that are generous and helpful to those in need.
In October of last year – thanks in large part to this community’s help – our Hayley – daughter, granddaughter, mother, partner, sister, auntie, and great friend to many – was able to undergo experimental surgery at the Mayo Clinic in Phoenix Arizona.
Since that time Hayley has continued to struggle with a post-op infection on the wound above her right ear, which has required constant vigilance and continued medications.
In spite of that, Hayley has noticed some improvement in her days out of bed. This occurred right at the predicted six months after surgery.
Over the last 10-12 weeks Hayley has been out of bed more days than she has over the last two years.
In no way does this mean a normal life, it just means that we are all so very grateful to see Hayley out of bed, enjoying her life, as well as her daughter Sloan and partner Mike more often.
Nobody appreciates it more than that little family, as they wait for the arrival of the latest addition – due in mid August. On our last visit to the Mayo Clinic in the spring, the physicians confirmed that Hayley is still the only person in all of North America to have this level of nerve stimulation treatment.
What we were really happy to hear is that in Germany this treatment is more common, and they are about to publish a paper stating that if a patient has had some positive response at about the six-month point post operatively then they are realizing a marked improvement between 18-36 months after stimulation begins.
A day of pain that is 8/10 is something that would put most people in the hospital, or at least in bed. For Hayley those days are an improvement, and while she is grateful for that, it is not enough to consider that a normal life. They wholeheartedly agreed with her, and will continue to strive to improve this for her.
We are all keeping our collective fingers crossed that this is the case for Hayley, and we are so very grateful to this community for supporting Hayley and her whole family in this journey.
Kathy Goldie, Hayley’s mom
