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Blood in, blood out |


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Hoping for help from adult stem cells
By Don C. Reed
Editor’s note: Don Reed is a well known California stem cell research advocate. His son, Roman, sustained a spinal cord injury, is a quadriplegic for whom the Roman Reed Spinal Cord Injury Research Act was named. Don has worked with legislators and patient advocacy groups, written extensively on stem cell research and served as the Chairperson of Californians for Cures. He is the publisher of stemcellbattles.com, a web site dedicated to his fight for embryonic stem cell research. Since it’s launch in October, 2005, Don has posted a column daily, over 100 in all. Here Don shares his most recent family story about his sister, Barbara, to whom we wish Godspeed for recovery...
April 5, 2006
“Her white count is zero,” said my brother-in-law, Chris, on the telephone yesterday. When he and my sister Barbara married, she was the picture of health. A fitness instructor. She lived right, ate right, exercised hard, no smoking or drinking.
The image of her walking down the aisle with beaming husband Chris is one I can call up in my mind without the slightest difficulty. There she is, radiant, joyful, strong.
Six months later, the cancer struck. Barb asked me not to reveal what kind of cancer it was, so I won’t. But she had the operations immediately to try to remove the source of the devastation. It didn’t work.
She had massive chemotherapy, the most aggressive doses. “Basically, you bring the body as close to death as you can without actually dying; try to wipe out the cancer.” That did not work either. All it did was make her terrifyingly sick.
She developed a heart condition, and had to have stents put into her heart, little tubes to help the blood flow more easily. At one point she was hooked up to a heart-help machine bigger than she was and it was on wheels. When she got out of bed to go to the bathroom, the machine went with her.
She developed leukemia, probably from the chemotherapy. So now she has cancer, which killed our mother so young at age 55, and leukemia, which murdered our sister Patty at 23.
Barb was in and out of the City of Hope, probably the most advanced cancer-fighting institute in the world, in Duarte, California. Fortunately she had magnificent insurance or they would have been wiped out financially long ago.
Bone marrow transfer was an option at first, but I was not a match and our brother Dave’s leg bones are all messed up, due to a motorcycle accident years ago.
So, adult stem cells. You know how I feel about adult stem cells; roughly the way I feel about chemotherapy. It isn’t much, but it is all we have available right now.
Where would the research be today, if President Bill Clinton had been allowed to go forward with it, as he wanted to do? People say Bush authorized the first funding of embryonic stem cell research. False. Clinton authorized it first. It was not allowed and he had to withdraw his request. There were too many of those gentle, kind, religious conservatives in office and the President was told he could either give up on the idea of funding embryonic stem cell research or lose the entire National Institutes of Health. That’s why embryonic stem cell research was not funded when it was first discovered, even though the science and medical communities knew it was important.
An advancement of medicine was denied for political reasons, just like narrow-minded conservatives are hoping to criminalize SCNT and chimeric research - to shut them down before we even get the chance to find out their true power.
The way I see it, my sister is fighting for her life with second-best therapies.
She is not backing down. However limited the weapons are at hand, Barbara will fight. She endured more chemo and also arsenic, poisoning the system’s defenses so they would not reject whatever help could be had from the adult stem cells.
Then, the adult stem cells had to be obtained. That was where my brother came in.
They only needed about 50 cc’s. Getting that quantity from embryonic stem cells would not be difficult, I am told. Gallons could be made. Embryonic cells multiply like rabbits. But adult stem cells are rare in the system and if they multiply at all it is slowly, and with difficulty, like (excuse the crudeness) century-mark senior citizens having sex. The process is possible, but easier for embryonic stem cells, which multiply with enthusiasm, like newlyweds who wish the wedding guests would hurry up and leave so the more private festivities can begin.
To get enough adult stem cells (blood cells, haematopoietic stem cells), the doctors need to take pretty much every drop of blood from the donor’s body.
My younger brother David flew down to the City of Hope in Duarte, California, but it should not be him giving the stem cells. It should be me! I had given blood to Barb before. We were a match (O positive). She even said she liked having my blood, saying it gave her energy, but I was not a close enough match for stem cells or bone marrow.
Dave had a motorcycle accident years ago. A truck forced him off a cliff at night and he flew through the air, ending up with one leg across the branch of a tree. The motorcycle fell across that leg.
I remember standing by his bed while he struggled with the decision to keep the leg or not. Amputation would be easy, the doctors said. Keeping the limb would mean a horrific series of operations - removing the fragments of bone, coring them out like letter O’s, putting the circles around a rod of stainless steel. This would be put into his leg and later, when the bones grew back together, the metal would have to be removed. Dave went for it.
So much bone was lost in the process that his leg was several inches shorter and he had to have a special shoe made. But he kept the leg and he walks with it, not to mention he also survived a major heart attack. We should not be messing with him.
But Dave has notions about how a brother is supposed to be. Large needles (like spikes) went into both his arms. He made a little joke that he was a two-fisted blood donor. They hooked him up to the machines that looked like one of those electric shock torture machines in the spy movies… “Tell me your grandmother’s cookie recipe!” “Never!” buzzzzz!
The blood began to run out of one of his arms and into the machine. After filtering out the adult cells the rest of the blood would be put back into David through the other arm. They added an anti-coagulant so it wouldn’t clot. It was a slow process, a continuous cycle: blood in, blood out, and as the gangsters say, referring to their initiation, “Beaten up to get into the gang, beaten up worse (or killed) if you ever wanted to leave.”
Dave was on the machines five hours. He was exhausted when they took him off, having had the blood taken out of his body and put back. He knew he would have to stay a couple days, eating much and resting more, before it was safe to fly home. But it was not over. Even after five hours there were not enough adult stem cells. They had only gotten 19 cc. “We’ll do it again tomorrow,” they said.
And the next day, they put my brother back on the machines, this time for six hours. 27 cc now with 19 from the day before, 46 cubic centimeters. Close enough.
“How bad was the pain?” I asked him afterward.
“A lot less than I expected,” he said, and changed the subject, babbling away about something else, the old Johnny Weissmuller Tarzan movies we both enjoy.
People think I talk a lot? I’m Silent Sam beside my brother. When he calls, I contribute to the conversation primarily with, “Uh-huh” and an occasional, “Really?” for variety. Dave is like a shot of coffee in the morning. You might be down and gloomy when you first pick up the phone but a few moments of Dave will perk you right up. I was so proud of him.
So the 46 cc of stem cells were put into Barbara’s arm. “It looked like raspberry juice,” said Chris. “No, you can’t talk to her now,” he went on, as protective a husband to Barb as Dave is as her brother, “The doctor says she has to nap a lot, maybe as much as 20 hours a day.” He said it would be fine if I wanted to come down and give blood, but I probably would not be able to see her. Even he had to wear a mask and gloves. Nobody who even thought they might be coming down with a cold could come near her. Her white blood count was zero. She had no way fight off infection, even minor ones like a common cold.
Now we could only wait, hoping the primitive stem cell therapies available to us now would do some good. It will take probably three weeks before we know if they help.
And people wonder why I get so riled up about Washington (or Sacramento) and their endless ignorance-based restrictions and delays of stem cell research? “It’s just politics,” they tell me.
Just politics… and people’s lives.
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Don Reed, former Chairman, Californians for Cures |
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