September 23, 1999
A quick update this time. Timmi was released from the hospital a few hours before Yom Kippur,* after five straight days of intensive chemo. She felt quite awful, both physically - weak, whole body hurting, nothing tasting right, etc. - and emotionally. Things have started to improve, though, and tonight she felt well enough to go out to a movie with me and Shari, and even sat in a cafe with us afterward for refreshments.
Today she had a bone scan, which her doctors want to compare with the PET scan she had right before Rosh HaShana,** in order to determine more exactly the extent of her remission, so as to decide how much more chemo to give her before the transplant; she will get at least one more course like the one she just finished. If that's all, she will probably get to the transplant sometime in December.
Last night I spoke to a senior leukemia expert at the Dana Farber Institute (the Harvard Medical School cancer hospital), and am pleased to report that the course of action that he would recommend is exactly, but exactly, the one supported by Timmi's doctor, Professor Cividalli, right down to the smallest details. This has actually happened in the past as well, and my instinct was always that we can rely on "Civi" (who is greatly admired by, among many others, Rav Firer***), and that instinct has now once again been confirmed. The Harvard doctor said definitely that to his knowledge there is no therapy that offers better chances of a cure than a second transplant, in a case like Timmi’s; he would also perform the transplant in the same way that Prof. Cividalli is planning to do Timmi’s. So one immense comfort to us is that we can confidently treat Timmi right here in Israel, without feeling we need to incur the expense and the emotional and physical dislocation of taking her abroad for some other kind of treatment.
Hag Sameach**** to all of you!
*The Day of Atonement
**The Jewish New Year
***A rabbi with encyclopedic knowledge of the medical world
****Happy Holiday (written just before Succot, the Feast of Tabernacles)
September 24, 2004
It’s now a few hours before Yom Kippur, the Day of Atonement, on which Jews fast and pray all day, asking God’s forgiveness for our sins. According to Jewish tradition, it is on Yom Kippur that God decides the fate of each human being during the coming year – who will become ill and who will recover, who will live and who will die, who will die in the fullness of their years and who will die before their time.
Jewish tradition also tells us that the very day of Yom Kippur atones for some sins – those of which we aren’t aware and for which we can’t ask for specific forgiveness. To me, this says that even when we human beings act with the purest of hearts and the best of intentions, there will always be things we don’t know at the time we choose a particular path. Every human being in this world will sometimes make the wrong choice. But God knows that we are not perfect creatures: when we do get it wrong, we may be forgiven.
All parents of children with cancer know the anxiety of wondering whether the treatment their child is getting at any particular time is the best one, the one that gives the greatest chance of total and lasting remission, the “right” one. I’ve known many parents who went from doctor to doctor, getting the same number of opinions as the number of experts they asked. This, of course, put those parents in the frightening position of having to choose between medical opinions – without, of course, having any medical knowledge or training. Many, after the agonizing process of deciding among several options, spent enormous amounts of time and money on treatments that weren’t covered by their health plan, sometimes traveling abroad to do so.
We were saved this agony by deciding from the outset that we trusted Timmi’s oncologist and would rely on him to choose among the various medical options. This, though, didn’t prevent other people – usually not even doctors – from giving us all kinds of advice. At least a hundred people (or so it seemed) asked us whether we'd considered alternatives to conventional medical treatment. Others offered specific advice about treatments that they “knew” had cured some person or other; many of these alternatives, of course, contradicted each other. One man, a perfect stranger, came up to Timmi and me in the mall (you could tell at that stage that she had cancer), and told us with perfect confidence that all she needed to do was not eat anything for a week, and her cancer would go away. A doctor we went to during Timmi’s remission told us that if she would eat only Indian food, she would be fine. Another doctor we consulted in search of natural, homeopathic or other alternative treatment for the side effects of chemotherapy told us we should take her to China. (As if no one dies of cancer in India or China!)
All parents who lost a child to a long illness – those who trusted their own doctors and those who didn’t, those who tried all kinds of alternatives and those who put their faith in conventional medicine, even those who bankrupted themselves to try yet another promising treatment – all of us are left with the questions. Did we make the right choices? Did we do all we could? If there was really nothing that could have saved Timmi’s life, should we have at least saved her the pain, nausea, fear and body changes that two bone marrow transplants, several courses of chemotherapy, and anti-rejection medicine caused her? And this doesn’t even touch on the choices we made in our parenting – how much time should we have devoted to Timmi (who could easily have take every minute of the day), and how much to our other children? Any answer I might give myself today feels like neglect of one or the other of our children. (I hope to write more about this last dilemma in a future post.)
The comfort I take in Yom Kippur is that I can let go of those questions. Although they will never be answered, I don’t have to let them torture me. In this imperfect world, there's sometimes nothing we can do to get things "right." I could not have prevented Timmi’s illness and death; these things were in God’s hands. And although while she was still alive I might have chosen differently if I'd known then what I know now, God loves and accepts me as the imperfect human being that I am. I am forgiven.