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 > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn