MPNforum Magazine

 Let us tell the story of Ian Sweet, suffering from acute myeloid leukemia, awaiting further chemotherapy to prepare for a stem cell transplant.

 An MPN community leader, young and otherwise healthy, this Australian scientist and caregiver, after a long period of hydroxyurea treatment for his polycythemia vera developed AML.  Over the entire nearly two decade history of on-line MPN patient support, Ian Sweet has been on the front lines…daily.  Every single day, even when he wasn’t one of the familiar responding managers of MPN-NET.

Even now, he still is.

Two short anecdotes might serve to sketch out his story.  Another Australian, let’s call her Molly, contacted us for help. She was isolated in a remote, rural area.  She had no idea what myelofibrosis was but knew her husband was failing rapidly  and his physician thought it might be a blood disease like myelofibrosis.  We put her in touch with the Forum and MPN-NET and told her of Ian.  Weak and dispirited after failing a second round of chemotherapy, he was unlikely we said, to respond for awhile but his was a name to remember..

He wrote her two e-mails, immediately, one short, one long, putting her in touch with people in Australia and giving her contacts for international on-line support.  Even neutropenic,  leukemic, and anemic, he was able to fill her life with knowledge and hope and helped move her husband along a therapeutic path.

And then there’s his love for life and his wife, Marie. After his third round of chemo failed to put his leukemia in remission – thus postponing a possible stem cell transplant —  he faced a week of recovery before a new, promising treatment was tried.

He wrote:   In the meantime I’m having a week off the chemo, and with gradually rising Hg (or so I assume) I’m feeling pretty good. Marie and I are off for 3 days “down the coast” – the S coast of NSW is only 2 hours drive from Canberra, and has dozens of beautiful beaches, inlets, small towns and spots to walk, reflect, and so on. We’re looking forward to it after weeks of hospital visits, blood tests and assorted medical interventions.

 We can have well-founded hopes for his complete remission on this new treatment,  the so-called FLAG regimen for refractory AML.  Whether we pray for him, hope for his full recovery, or simply hold him in our minds and hearts, Ian Sweet is a bright image of the best in each of us…and a reminder of the deadly enemy we all face.
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