Don, you are so correct.  Please do let us know how Barbara is doing.

Thanks.

Bev
----- Original Message -----
From: "rayilynlee" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, May 05, 2006 1:16 PM
Subject: Don's sister Barbara & plea for ESCR, SCNT


># 142 Friday, May 5, 2006  -  "WHY ARE YOU HERE?"
> I came home from the Christopher Reeve Paralysis Act rally all excited,
> eager to tell Gloria what happened.
> Instantly that feeling was swept away, like an Autumn leaf in the fire.
> "Chris (my brother-in-law) said you need to get an experimental medication
> for Barbara."
> What?
> "The doctor said if anyone wanted to see Barbara"-my wife paused, glanced
> at
> me briefly-"They should come down now." She did not say "for the last
> time",
> but the words hung in the air.
> My sister Barbara was in the City of Hope hospital for cancer and leukemia
> treatment. Most recently, my brother David had come down from Washington
> and
> given blood for adult stem cells, a grueling 11 hour ordeal.
> Experimental medicine?
> "As a side effect of the leukemia, she has Veino-Occlusive Disease, (VOD)
> blood clots on the liver," said Barb's husband Chris on the phone, "It is
> a
> life-threatening condition. If her liver goes, everything begins to shut
> down.
> "Anyway, there is an experimental medication called Defibrotide, and it is
> inbetween clinical trials. The company that makes it is in Italy. The City
> of Hope is asking the company to provide some of the medicine for Barbie,
> and that means the Food and Drug Administration (FDA) has to approve."
> "Let me talk to the doctor," I said.
> "I have to warn you, this doctor may not have the best bedside manner in
> the
> world," Chris whispered. Then he turned away from the phone.
> "Uhm, my brother-in-law wants to help us get the experimental
> medication-can
> you talk to him?" I heard him say.
> "No," she said.
> This was 8:30, so I went to bed.
> By two I was on the road to Los Angeles.
> I remembered Barbie's twin, Brucie. I had two memories of him. One of him
> in
> a sailor outfit, smiling, so beautiful.
> The other was the last.
> I was eleven years old, when I found Brucie, motionless, face down in the
> crib. His infant face was blue. I got a neighbor, and she began doing
> artificial resuscitation on his back, pushing down with her palm.
> She wanted me to do it, and I could not.
> To my shame, I ran from the room.
> At the ICOC subcommittee meeting, I whispered to Susan DeLaurentis that I
> could not stay very long, had to go see my sister.
> "Why are you here?" she said, putting her hand on my shoulder, like don't
> worry, we can take care of this.
> This is important, I said lamely, we have to get good egg donation
> standards
> in place.
> Which was perfectly true.  The safety of the egg donor came first. But we
> did not want standards in place that were so restrictive we could not get
> the eggs needed to do research--  which might lead to cure for people like
> Barbara.
> "Go, go, be with your sister," she said.
> "I'll be there at 2:00," I said, "But first I have to talk to Michael
> Friedman."
> Dr. Michael Friedman worked on the Independent Citizen's Oversight
> Committee.
> He was also President and Chief Executive Officer at the City of Hope
> hospital.
> "He's not here, I don't think he is on this committee," said Susan,
> picking
> up her Blackberry.
> "I also want to talk to Dr. Stephen Forman," I added, "He is the
> department
> chair, or something, also at the City of Hope.:
> Susan called up Amy Daly, and Melissa King.
> They hunted up numbers and emails for both doctors, and said they would
> locate him. I called Dr. Friedman's office, spoke with his associate Lisa,
> and left a message.
> In the public comment period, I made some inconsequential comment, sat
> back
> down.
> There was one more person I wanted to see.
> At last committee chair Bernie Lo called for a bio-break.
> Now most people on a bathroom break will either head directly for the
> facilities, or maybe chit chat on the way, get some snacks from the table,
> stretch-
> Sherry Lansing, I knew, would have her cellphone out before she left the
> table.
> She finished the conversation she was having, got out her cell phone.
> I followed, waved.
> She waved back, smiled, realized I wanted something, paused.
> "I need a favor," I said.
> "I'll call you back," she said to the person on the phone.
> "So all I want is for Dr. Friedman to ask the doctor to extend me every
> courtesy, let her know I am not some wacko troublemaker," I concluded.
> "Maybe I should talk to her myself," she said.
> I had a sudden chill, a vision of what Sherry Lansing might be like if she
> got angry. You do not reach the top in a male-dominated world like the
> movie
> business without being very, very strong.
> "No, no, it would be wonderful if you could just talk to Dr. Friedman, so
> Barbie's doctor won't regard me as being in the way. I have to get the
> experimental medication, which means I have to ask questions, be a
> nuisance
> in general , and I just want to be able to-"
> "Absolutely," she said.
> Then I called Representative Pete Stark's office in Washington, DC, asked
> for his legislative aide Debbie Curtis. She had personally helped us
> twelve
> years before, with the FDA, when we had needed to get the medication Sygen
> for Roman. It also had been inbetween the different clinical trials.
> "I'm going into a meeting right now, send me all the information, okay?"
> said Debbie Curtis. Her talent and energy had helped her rise; she was now
> chief of staff.
> Very much okay.
> As I hung up, I thought how often the kindness of people had helped us in
> this struggle. Pete Stark had not only helped us with the FDA, but he had
> personally donated $500 to Roman's rehab, as had Senator Dianne Feinstein.
> "It's not technically a coma," said Chris as I washed my hands in the
> hospital sink.
> "But when you speak to her, she does not answer, does not respond?"
> "No."
> I hooked the straps of the paper mask over my ears. He showed me how to
> pinch the part over my nose. The chemo and arsenic treatments had wiped
> out
> her immune system, and we did not know if the adult stem cells just given
> her were helping.
> "You probably shouldn't try to talk or interact with her," Chris said,
> "She's
> sleeping now, and we don't want to disturb her."
> We went inside.
> A curtain, and a nurse beside the bed. Someone had to be there 24 hours a
> day now.
> The bed was partially upraised, to help her breathe more easily. I moved
> around so I could see her.
> I took a sudden breath, having forgotten about Barbara's hair. It was
> completely gone.
> She was curled on her side in the foetal position, the sheets drawn up to
> her neck. A tube ran into her nose.
> I listened to her breathe for a while. Not very long.
> "She's looking good," said Chris, when I came out.
> "What?"
> "She was terrible pain a couple nights, bending forward in the bed, and
> groaning. I guess it was her liver."
> I needed a computer, I told Chris.
> We found one, and the person using it was generous enough to let us take
> her
> place.
> I wrote the letter to Debbie Curtis and Representative Stark, asking them
> to
> intervene with the FDA once again, just as they had done twelve years ago,
> when they had gotten Sygen for Roman.
> Chris read over my shoulders, made a couple of corrections. We included
> the
> name of the person who had written up the FDA letter, (Her title was
> pharmacological investigator, if memory serves), the medication's name,
> and
> Drs. Friedman and Forman.
> We sent it off.
> Chris's Mom and Dad were there. I had the chance to tell them what a
> magnificent son they had, that I could not find words to express my
> admiration for the love and loyalty he had shown my sister. His two
> brothers
> were there as well, and their wives. They had come to help.
> Then I was on the road again, heading back to Northern California.
> Melissa King called, to reassure me that they had gotten through to Dr.
> Friedman.
> "Sherry Lansing called him too," she said.
> Jo, a person from the California office of Pete Stark called.
> "That Dr. Friedman is certainly a wonderful man," she said, "He is
> completely knowledgeable about your sister's case, and said he will be in
> touch with us if there are any problems with the FDA, and he understands
> the
> urgency of time."
> Chris called:
> "The FDA is not going to be a problem," he said, "Everything is coming
> together."
> I thought about Sherry Lansing, Michael Friedman, Debbie Curtis, Pete
> Stark,
> Melissa King, Amy Daly, Susan DeLaurentis, who had taken time from their
> busy schedules, to help my sister in her hour of greatest need.
> And I thought about the millions of other people suffering with incurable
> disease, who do not have the luck of such amazing friends.
> We needed stem cell research in every hospital across the world, and not
> just this rinky-dink adult stem cell stuff, but the real thing, embryonic
> stem cells, and Somatic Cell Nuclear Transfer, whatever it takes to give
> everyone a fighting chance at a healthy life.
> Now all we have to do was wait for the medication.
> And hope it works.
> By Don Reed
>
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