December 5, 1999
Well, as seems to have happened quite often since Timmi's relapse, the plans for her treatment have been interrupted. As I mentioned in my last update, Timmi was formally hospitalized in the bone marrow transplant department last Wednesday in anticipation of the transplant, although she has slept each night since then at home and was home for Shabbat as well. The plan was for her to start the preparatory chemotherapy tomorrow, and for the transplant itself to take place in about two weeks.
Unfortunately, a low fever that Timmi had been having on and off over the last few days, instead of going away as we had hoped, developed over Shabbat into a serious fever (39C). As a result, she went into the hospital tonight (Saturday night) and will probably receive antibiotics there (pediatric department) for several days. Because she cannot get chemo during an infection, the transplant will have to be deferred.
This is unfortunate for two reasons. One, the in-between period after Paris and before the transplant has been difficult emotionally for Timmi; dragging it out will not do her much good in that department. In addition, Timmi has been feeling cancer pains again recently, which is a sign that things are again going in the wrong direction. While she never achieved full remission this time around, we had hoped that she would start the transplant process with as few cancer cells as possible in her body. The delay in commencing treatment just gives the existing cells that much more time to be fruitful and multiply.
I will write again when I know the revised schedule. Until then, Shavua Tov* to you all.
*Shavua Tov – A good week (a greeting for the day after the Sabbath).
December 10, 1999
Yesterday Timmi was released from the hospital, after having been hospitalized since Saturday night with a fever, apparently due to a virus. As a result, the transplant was deferred, and we must call the hospital on Sunday to see if there is a bed in the bone marrow department. If there is, she will start her preparation then, rather than this past Sunday as was originally planned. If not, she will get the first bed available.
Her mood is rather brittle - she can easily go from up to down, from happy to annoyed and angry, and also (luckily) vice versa. As for me, I am quite tired, having run around all week, and with Chanukah on top of everything. Actually Chanukah, though a fair amount of work, has been fun; Monday evening we all brought the latkes I made to the hospital and had a party with Timmi.
If the transplant really does start next week, at least it will be when the kids are back in school, and for a pretty long stretch before the next holiday.
Shabbat Shalom to all -
December 15, 2004
Last Shabbat, the Torah portion that we read in the synagogue left us in the middle of the very dramatic story that ends the Book of Genesis – that of Joseph and his brothers. Joseph’s is a story of near-constant reversals of fortune. In one day, he went from his privileged life as Jacob’s favorite son to being sold by his brothers into slavery in a foreign land. In one hour, he went from his status the trusted servant of the wealthy and influential Potiphar to that of a prisoner, with no knowledge of how long he would remain in prison. He was taken from his prison to rule second only to Pharaoh and to marry the Egyptian High Priest’s daughter, ultimately to be reconciled with his brothers and reunited with his father.
Each of the future lives that Joseph might realistically have envisioned for himself at any one time – as a shepherd, as a slave, as a prisoner and as a stranger to his family - turned out not to be his ultimate fate. Though he was a visionary who could interpret dreams to predict the future, he surely couldn’t have mapped out in advance the turns that his life was to take. But Joseph learned to accept that very unpredictability. He learned, and repeated first to his fellow prisoners and then to Pharaoh himself, that all things come from God. That faith allowed him, in each new life in which he found himself, to refuse to give in to the despair that might have paralyzed another in his position. Instead, he strove to be the best person he could be in the circumstances in which he found himself, and to transform evil into good. Through that faith, he was able to redeem his own personal life - and to save the lives of his own family as well as those of countless others in Egypt and its surrounding counties. I am trying very hard to learn, remember and apply this lesson in my own life.
If someone had asked me when I was twenty what I believed was in store for me thirty years down the line, I probably would have answered quite confidently. Clearly, I would be living in a pleasant and stimulating city in the United States. I would have a family of two or at most three children, who would grow up to share my (and my husband’s) values and ideals. These children would already be either starting out in their own careers or advancing in their studies. I would have a high-powered job - most probably in a profession in which I was saving the world, or at least some part of it, for example as a public interest lawyer - and would have reached the apex of my career. Life would be orderly and fulfilling, and the traumas and sadness of my childhood and teenage years would be far behind me.
And here I am living in a pleasant, stimulating city – where it’s normal to see men in civilian clothes walking around with automatic weapons. Just now, I’m contemplating my third career change. I raised seven(!) children, none of whom (so far) started university studies before the age of 24. (OK, so Sheila started studying drumming at a music school when she was 20, but she didn’t go on with music.) To my great pride and pleasure, all of my children share Don’s and my values and ideals, and act on them. But not all of them grew up.
Everyone knows that life throws you curve balls. But some curve balls are harder than others, and more unexpected. Becoming an observant Jew after growing up Jewish but belonging to no religious stream, marrying an Israeli and moving to Jerusalem, changing my career plans, having the formerly unimaginable number of seven children, all those things weren’t in the original plan but were still in the realm of the conceivable. But having a child die of cancer at the age of 18 was - literally - unthinkable.
While Timmi was ill, our family’s life reflected in “micro” – on the day-to-day level – the dramatic reversals that I had experienced on the “macro” level in my own life. Like other families of children with cancer, we lived for years with unexpected developments and changes in plans, any of which could have meant life or death. A delay in starting any one of Timmi's many courses of treatment could have meant the treatment would come too late. Putting off a transplant isn't like putting off a trip to Paris. For six years, I lived with the almost-constant awareness that, as Arundhati Roy writes in one of my favorite books, The God of Small Things, things can change in a day.
Under these circumstances, I had pretty much two choices as a person of religious faith. One would have been to believe at every stage that things would go as we were planning right then. But this would have caused me constant anxiety and frustration at each of the many setbacks we experienced in the up-and-down course of Timmi’s battle with leukemia. Ultimately, it would have thrown me into despair as my expectations were shattered time and time again. When it means blindly believing that all will be well, faith is easily lost when real life trumps expectation.
My other option was to learn a deep kind of patience based on a different kind of faith. This kind of faith doesn’t make any assumptions about the course my life, and the lives of my loved ones, will take. Rather, it keeps me believing in a loving God even in a cruel world. It enables me to go on, even though I know that life holds absolutely no guarantees. It teaches me that I have and will continue to have the strength to do the right thing at any given moment, even when everything around me seems completely wrong. It helps me to try to be the best person I possibly can be even in what sometimes seems to be the worst of all possible worlds. This is the faith I've chosen, and I try my best to nurture and to live by it.
Joseph started out with a dream that made him so sure of his future that he had no trouble bragging about it to his envious brothers. That smug assurance brought about his original downfall. It was only when he learned to concentrate on doing God’s will in the present, and to leave the future in God’s hands, that Joseph’s dream was ultimately fulfilled, and that good came out of all the evil he had experienced in his life. I wish for all of us the wisdom and the serenity to do the same.