  News Alert Update, Sheba Medical Center at
Tel Hashomer, Israel The Marion and Elie Wiesel Children's Hospice at Sheba Medical Center is the only one of its kind in the world. It is a special place that provides sick children and their families all the love and support that they need.
The Children Of Heaven By Ariela Aylon, Yediot Ahronoth (Excerpts translated by Gali Taub-Sarig) What do you say to a 4 year old child who is going to die from cancer? How do you look into the eyes of a 6 year old girl when no chemotherapy will save her life? How do you look into the eyes of her parents? What can you do to make the last days with their child less traumatic? These are the questions that the staff in the hospice for children with cancer in the medical center of Sheba in Tel Hashomer deals with every day. Every Sunday afternoon for the last four years -- in winter and summer -- a delivery man from the flower shop arrives at the Children's Hospice at Sheba Hospital. He unpacks hundreds of fresh flowers, which the staff puts in big vases along the walls of the hospice in front of each of the four rooms. The bright colors of the flowers help us forget for a moment that in each room there is a child suffering from cancer who may be breathing his last breath, surrounded by the love and warmth of his closest family. This was true the day 8 1/2 year old Noa Zachariah died. The corridor was full of flowers whose colors and smells were like a celebration of life at the entrance of the room where Noa struggled to breathe. "Everything around us was full of life and only my child was dying," says Ilana, Noa's mother. That day in March 2003, Noa's family gathered around her bed, holding her hand, looking at her skinny body, crying quietly. "Even when I knew that this is it, and Noa is going to die I still whispered to her 'don't let go, fight.' I approached her and whispered to her how much I love her and what a terrific and fun child she is. "I can't let you die," I said to her. When Noa's breath weakened, her father Abraham went to call the doctor. The doctor, unable to look directly at the faces of Noa's family, informed them that there were no vital signs. Noa's family stood by her bed for two more hours before deciding to leave. Ilana took a big bag and gathered all of Noa's belongings; her Discman, pajamas, and drawings. It only took a few minutes and then Ilana gave her daughter a final kiss and the family left the room. "That's it, we are going home. We came to the hospice with Noa and we are leaving without her." When Noa's cancer was diagnosed it was already too late to save her. In the middle of June 2002 when Noa complained of headaches, her family thought she had some kind of a virus or wasn't drinking enough fluids. When the pain killers Noa took didn't ease her suffering, she was sent to have a CAT scan. Noa's mother remembers: "A half an hour later the doctor called me and asked me to come urgently. I asked a friend from work to come with me. The diagnosis was that Noa had a brain tumor but at the time I didn't realize how difficult and terminal the prognosis was. The very same day Noa was sent to Sheba Hospital. The doctors promised they would do everything they could for her; however, they also told the family that there were no treatments available with a history of success for this kind of tumor. Only after hearing the same diagnosis from every doctor in Israel and the U.S. consulted by the family, did Ilana realize that Noa was living on borrowed time. "On the one hand I wanted any kind of treatment for her, but on the other hand I agreed to have her in the hospice". Even the new and advanced chemotherapy available did not reduce the size of the tumor. Radiation also failed. Noa was hospitalized in the hospice six times during that year. "The expertise of the staff helped us to go through this hell that is called saying goodbye to your child. They are always there and let the parents unwind. If you have to go through this experience in life, the only place is the children's hospice that hugs you and supports you and gives the family all the support that it needs." Haim Ashkenazi's fifth birthday was celebrated six months before his real birth date because his doctors knew he would not make it to his next birthday. Two years before when his mother gave him a bath she noticed that one of his testicles was swollen. She took him to the doctor who sent him that same day to the hospital to have a biopsy. Ten days after the biopsy his mother got a phone call from the hospital. They asked her to come right away to meet with the doctor. The doctor told her that her son has a very rare and deadly tumor in his testicle and that they had to remove it. Haim recovered from the operation quickly and was sent to the oncology ward at Sheba Hospital. His mother remembers that she started to realize what they were dealing with only then, when she saw so many bald children of different ages. "One day a nurse told us that we were going to the Wiesel House and I didn't know what it was, but when we entered, it looked like heaven. A beautiful place full of colors and smiles and Haim was happy there. He was the center of attention, a small kid, full of grace, who touched everyone's hearts". Haim's mother also remembers her experiences at the hospice: "In this place I found people that you meet only in heaven. They were available to me every minute. Once the psychiatrists took me for a walk on the beach. Another time, a nurse who saw how I was neglecting myself brought me some hair products. There were no requests that went unfulfilled. Haim's personal doctor gave me his cell phone and insisted I call him when ever I need him, even if it was during the weekend or the middle of the night. They showed us such love that even today when I feel broken I realize that I am still on my feet and functioning thanks to them." The establishment of the only Children's Hospice in the world is the result of the devoted efforts of Professor Mordechai Shani, the Director General of Sheba, Professor Gidi Rechavi, the Manager of the Cancer Program, Dr. Amos Toren, the Manager of the Bone Marrow Transplant and Hemato-Oncology Children's Unit, and his assistant Dr. Yoram Neuman, all from the Sheba Medical Center. Dr. Toren told me that "every year hundreds of children arrive at Sheba to get treated. While the vast majority recover, there was a serious problem with the terminally ill children. In the past, such children were hospitalized at the end of the ward. The communication with them and their parents was poor because the doctors did not know what to tell them, or how. What do you tell parents whose kids are dying? Sometimes they even had to lie." We hired physiologists, social workers, grief counselors, physical therapists and alternative therapists and we moved forward." Some parents say no to chemotherapy and prefer only treatment to ease the pain. Others insist on the illusion until the end and ask that their child receive chemotherapy treatments even though they know there is no hopeful outcome. The doctors, Dr. Neuman explains, wanted to let the children die in a place that resembled home but still had the benefits of hospital care. The children come to the hospice long before their last days in order to get the benefits of the hospice, benefits like counseling and dealing with fears before death, in a supportive environment. During the last four years 120 children have died at the hospice. An even larger number of children have been treated and some even healed. "After we built the place we had one major problem: the stigma. We didn't know how to get rid of the negative connotation so we decided to make the place integrative and include children after treatment or children needing to rest between difficult treatments. As part of the fight against the stigma, the staff insists on calling the place Wiesel House after Marion and Elie Wiesel (who donated and raised money to establish the hospice) rather than by its other formal name, The Department of Supporting Treatment." The Hospice is situated inside the hospital grounds, in front of the Management Office. The architecture is unique - a round brown building, one story high with a dome on the top. Inside there are four units, two on each side, set apart from one another to allow privacy. Each unit has a room for the child where he can bring things from home to make it seem familiar, plus a room for his parents and a small kitchen. In the communal space of the hospice there is a play room with games and a computer, a music room and a place for alternative treatments such as reiki and reflexology. When the hospice was established, the staff, under the management of Dorit Grebler, the head nurse, decided that no child's or parent's request would remain unfilled. This commitment became the motto of the place. Two weeks before 16 year old Kay died; she asked to bring her dog in to keep
her company. The dog was brought in and gave her so much joy and comfort. Kay
spent her last days with her beloved dog licking her, helping her forget her suffering
and her fears. There was no more sad and heart-wrenching image than seeing Kay
and her dog those last days of her short life. For more information, please contact:
Lauri Novick, Executive Director, Friends of Sheba - Tel Hashomer: New York
To add or delete your subscription from this list, please contact friends@shebamedical.org
|
