December 10, 2000
Unfortunately, Timmi is not out of intensive care, as we had hoped. An attempt was made on Shabbat to wake her in order to remove her tubes, but her breathing was not and remains not good enough for that. Today a very large quantity of fluid was again drained from one of her lungs, and sent to every conceivable laboratory; so far all of the tests have continued to be negative. Professor Cividalli, her oncologist, says that "the picture is very strange". But Timmi's "picture" has been very strange for a very long time now, so we are more or less used to that.
Besides her lungs not really improving for several days, her kidney and liver functions have gotten somewhat worse. As a result, some of the medicines she had been receiving were discontinued. One improvement over last week, though, is that she is now no longer fully mechanically respirated - her breathing is spontaneous but "assisted" by the machine (40% oxygen, for the doctors out there).
Now that the "fuller" lung has been drained (actually there was still some fluid left but obviously much less than previously), there is a chance that tomorrow another attempt will be made to take out the tubes and wake her up; the doctor with whom I spoke said that is still the direction in which they hope to move.
If I may make a request, please do not ask me individually what is happening on the intensive care scene. I know how worried many of you are, but I promise that I will give updates when my strength and presence of mind will allow. If there is any significant improvement, I will certainly make an effort to let you know as soon as possible following the improvement.
Love to all,
December 15, 2005
In my last post, I wrote about how hope sustained me throughout Timmi’s illness, and how it did not disappear even when I “knew” that her death was imminent. The story of Timmi’s hope is even more remarkable.
Timmi decided to take an optimistic view of her illness from the very beginning. I remember vividly how, when we first got the diagnosis of cancer, Don and I entered her room, sat down on each side of her hospital bed and closed the curtains around us for privacy. Don told her that the doctors had found some cancerous cells in her bone marrow. At first she didn’t quite understand what that meant. A few cells? We explained further. When she understood that those few cells meant that she had the disease called cancer, she cried, but only a little. Then she said, “I am absolutely, one hundred percent sure that I am going to get out of this totally healthy. There’s no question in my mind.”
I was very grateful for Timmi’s fighting spirit, both because I believed that her attitude would make the illness emotionally easier for her, and because I’d read that “fighters” are more likely to survive cancer. I suppose I shouldn’t believe everything I read, but the fact is that believing that Timmi’s optimism would help increase her chances of getting better helped both of us cope with a totally new and incredibly overwhelming situation.
During the course of her illness, Timmi’s moods were even more unstable than a healthy adolescent’s. For one thing, she sometimes needed to take steroids, which prevented her from sleeping and magnified any emotion she was feeling at the moment. In addition, she often got very tired – and angry – at having to be a cancer patient rather than a "regular" kid. Sometimes she even despaired of ever having a normal life. Sometimes, like all teenagers, she thought about death, and there were certainly times when she feared it (see "Choosing Life," July 2005). But even in the hardest of times, her hope never deserted her completely.
Timmi even expressed to me, many times, her feeling of gratitude that things were not worse. “Look at the other children in the ward,” she said more than once. “Some are going blind from brain tumors, some are disfigured by growths on their faces, some are as small as kids five years younger. I just need to get through these treatments, and then I’ll be able to go back to a completely normal life. I’m really lucky.”
I was with Timmi for her last evening in the pediatric ward, before her turn for the worse required her doctors to put her into the sleep from which she never awakened. She was feeling quite bad that day and had little strength to concentrate on anything. I was trying to keep her amused by watching television with her and making funny comments, when the nurse came in and said there was a young man outside the room who was asking to speak with Timmi. I went out, sighing. Surely this would be yet another of the “do-gooders and well-wishers,” as Don calls them, who come regularly to visit the pediatric ward.
I should explain here that the last people Timmi ever wanted or needed around her in the hospital were visitors who were neither family nor close friends. The children’s ward at Hadassah Hospital in Jerusalem has a very large staff of medical, paramedical, educational and therapeutic professionals. Hadassah is a teaching hospital, so on any one day Timmi could receive visits from residents, interns, medical students, professors and doctors visiting from abroad, sometimes in large groups. There were the nurses and the technicians, who took blood, hooked her up to the IV and to any other necessary machines, and administered her medication. Then there were the psychiatrists, psychologists and social workers, as well as an array of music, art and other arts-based therapists, all of whom wanted especially to work with our talented daughter (or so we were informed by the head of pediatric psychiatry). There were also the volunteers from Zichron Menachem and other organizations dedicated to helping children with cancer and their families, who by arrangement with the hospital visited the children every day, designed and conducted activities for them, and played with them or gave out presents.
On top of all that came the well-intentioned do-gooders. The hospital management would sometimes bring around groups of donors, actual or potential, so that the philanthropists could see their dollars at work. (Once, when such a group came around, the nurses went nervously from room to room, asking that the children try not to cry or scream during the group’s visit, so they wouldn’t give the visitors a bad impression!) The ward even “hosted” groups of teenagers, who came around as part of their education or consciousness-raising or whatever. (I remember one group of American kids who came as one stop on their tour to Israel; they looked into the rooms and distributed cheap, silly toys that their tour guide - or “educator” or whatever - had apparently encouraged them to buy for the poor little patients.) Individual men and women would also come to the ward, wanting to read to Timmi or bringing her treats for Shabbat or for whatever holiday was being celebrated at that time of year.
Timmi valued her privacy very highly, and these visits often disturbed her, although she did her best to be polite. So Don and I learned to keep a sharp eye out for the well-wishers, and to steer them away from her bedside.
That evening, I went to look for the young man who had come to visit Timmi, prepared to politely but firmly ask him not to disturb her. I found a good-looking young man who looked about Timmi’s age. “Hello” he said, and introduced himself. (I wish I could remember his name; here I’ll call him Jonathan.) “I’m a first-year student at the medical school here.”
Guessing that I was puzzled why such a young person would be studying medicine, he added that he was enrolled in the Atuda, a pre-military program through which students are allowed to attend university and complete their degrees in professions such as engineering and medicine before entering military service, in return for committing themselves to remain in the IDF and work in their fields for a number of years after finishing their compulsory service.
“As part of my program, I’m required to volunteer for a certain number of hours every week,” he explained. “I’m doing my service right here in the pediatric ward, visiting the patients.” “I’ll ask my daughter if she’s up to having company,” I told him doubtfully. I went back in the room, expecting Timmi to ask me to tell Jonathan to go away, but when I explained the situation she surprised me by saying, “Sure, tell him to come in.”
The two of them discovered very quickly that they had a great deal in common. Timmi was 18; Jonathan was 19. She’d been a counselor in the Religious Scouts; he’d been a counselor in B’nai Akiva, another religious youth movement. They were similar in a more unusual way as well: both were not only religious, but at the same time held a politically and socially liberal world-view – a rare combination in Israel. They spoke of the music they liked to listen to, and generally about their interests and pursuits. Jonathan was incredibly sensitive to Timmi, and knew how to “go with the flow” while speaking with her. From time to time Timmi had to stop talking, because she suddenly felt weak or because something began to hurt. When that happened, Jonathan simply sat quietly and waited until Timmi was ready to begin speaking again. At each pause, I expected that Timmi would say that she didn’t feel well enough to go on, but she rallied every time and continued the conversation. I sat amazed, as Jonathan and Timmi went on talking for about an hour. It seemed like it had been forever since Timmi was able to concentrate on anything for such a long time, let alone make the effort to keep a conversation going when she was feeling so weak.
When Timmi really was too tired to go on, Jonathan took his leave. “What a sweetie,” she said to me, smiling, after he left. My heart skipped a beat. I was extremely happy, on the one hand, that she’d enjoyed the evening so much. But at the same time I couldn’t help feeling a deep sadness as I thought about what might have been, had Timmi and Jonathan met under different circumstances. Perhaps he would have been her b’shert, the one with whom God meant her to spend her life.
I wish I could remember every word of that beautiful conversation. I would write it down and keep it with Timmi’s photos, drawings, poems and stories. I can’t. But she said one sentence that remains crystal-clear in my memory, and that will always embody for me the incredible strength and endurance of her power to hope. There she sat in her hospital bed - after her strength had been steadily leaving her for weeks, if not months – surrounded by beeping machines and connected by a tube in her chest to her lifeline of nutrition, medications and blood parts; there she sat, speaking earnestly with Jonathan. After one of the many long pauses in the conversation, Timmi looked up at this lovely, gentle young man and smiled radiantly.
“I’m also thinking of becoming a doctor,” she said.