Pat Barnes

Pat Barnes

I would prefer not to be telling this story; if only Pat could tell it himself. Perhaps he will help me as I go by guiding my thoughts. It really began in 1984 when Pat was a senior at Washington State University. I never really knew how he found the lump in his neck but by the time he called me the diagnosis of Hodgkin’s disease had been made.

What is it we say about the unforgettable moments in our lives? Almost like they’re frozen in place in our memory, the color of the phone, the pencil holder, the sunny day, all are etched forever in my memory; the sound of his voice when he told me he had cancer.

I would prefer not to be telling this story; if only Pat could tell it himself.

Treatment for Hodgkin’s in those days was radiation and ultimately chemotherapy. Both take a major toll on one’s body. Over the next 12 years Pat went into remission and back into active cancer several times. Each time the treatment was more intense. Why am I bringing up this part of Pat’s story? Because it is well accepted that most autoimmune conditions are preceded by some kind of incident or “trigger” that helps to bring on the disease.

After many medically challenging years, marrying and becoming the father of a baby girl, one night he woke with what appeared to be white blisters in his mouth. An emergency run to the local hospital admitted him for diagnosis. It was a good facility but the only major hospital in a smaller town in Texas. There were no hematologist specialists who understood autoimmune diseases such as idiopathic thrombocytopenic purpura/ITP. The issue of not locating medical professionals who are versed in autoimmunity is all too common.

It became apparent that Pat needed to be moved to a location where the impact on his blood platelets would be better understood. He was “Medevaced” to Fred Hutchinson Cancer Research Center in Seattle with the hope of a bone marrow transplant that would support his troubled blood platelets. Two members of the Puget Blood Center research team directed his care for the ITP. Fred Hutch docs kept track of any continuing cancer issues. A pertinent issue was that his sister Tracey was a perfect match for the transplant if only stability with his platelet could be achieved.

Each day during Pat’s three week hospital stay in Seattle his wife Tena, his 3-month old daughter Riley and many family members and friends were in the hospital and kept close watch on his progress. As his mother I seemed to be the one that received the daily and ultimately hourly updates. The destruction of his blood platelets seemingly could not be stopped – no matter what strategies were applied. Normal humans have a count of between 250,000 & 500,000 blood platelets. Pat’s count bottomed at 1500. Those of us in minute to minute presence learned many terms and more than we ever wanted to know about ITP.

The reality is that Pat’s passing motivated a great deal of positive work in his memory to help those living with autoimmune diseases.

Today Riley will soon be 16 years old and never knew her father. He left us all having provided 33 wonderful, loving, energetic, creative and most of all joyful years. We are so much more for having him in our lives.

I don’t want to leave this as a depressing or even sad story. The reality is that Pat’s passing motivated a great deal of positive work in his memory to help those living with autoimmune diseases. I like to believe that when he left us it was to watch over those who continue on with lives and are also impacted by autoimmunity. I for one am motivated each and every day by the need to find a better path for the millions affected by one or more autoimmune conditions. Many others are with me in this commitment. We need even more. Please let me know if you would like to join in the march.

For more information, please contact judir@a3autoimmunity.org

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