Forgiveness

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!

Love, S.

*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.

Remembering

September 13, 1999
Shana Tova* to everybody.

Today I took Timmi to the hospital for what we thought were only blood tests, and when her doctor saw that her blood counts were pretty much back to normal, he decided to start her next course of chemotherapy today. It turns out that this course will not be like the previous one, but instead will consist of five straight days of high-dose chemo, for which she must be hospitalized. So in she went today, and we simply had to organize for it. (As they say in Greek, Ain Ma La'asot.**) We hope that she will get out on Sunday, but if her blood counts are too low by then she will have to stay over Yom Kippur*** as well, and possibly longer. I had hoped that the next round of chemo would be after the holidays, but the doctor preferred not to wait that long. So far she is taking it quite well, and believes that now is particularly convenient because this way she will miss only one day of school, if her hospitalization is not extended past Yom Kippur.

What else is there to say? It's inconvenient, to say the least, but we all hope the treatments will continue to have the desired effect, so that she will go into her transplant with as few remaining cancer cells as possible.

I wish all of us a Gmar Hatima Tova.****

Love, S.

*Happy Jewish New Year.
**Hebrew for “Nothing to do about it.”
***The Day of Atonement, the tenth day after Rosh Hashana.
****A wish to be inscribed in the Book of Life on Yom Kippur.

September 19, 2004
We've just finished celebrating Rosh Hashana, the Jewish New Year, the day that God opens the gates of Heaven to our prayers and grants us the chance to start over. Another name for Rosh Hashana is Yom Hazikaron, or the Day of Remembering, so named because we hope that God will remember us during the coming year and bless us with peace, health, and a full spiritual and material life. It’s also a time for our own remembering, for us to reflect back on the past year and on our lives to this point.

Holidays are sometimes the hardest times, when the “whole” family gathers for festive meals. It's impossible not to remember how it was when Timmi was alive, and to feel keenly that our family will never be truly whole again. But this past Rosh Hashana, I felt not only Timmi’s absence but also her continued presence in my life.

When I opened my prayer book on the first day of the holiday, the inscription written beside our names on the book’s inside cover (“The Earth is the Lord’s, and its plenty”) jumped out at me – it was in Timmi’s handwriting. At first I felt I would cry at this sudden whisper from the past, but then memories of Timmi filled me, and I no longer felt the need for tears.

For a very long time after Timmi died, I could only remember her as she was toward the end, as she quietly slipped away from us, coming closer every day to her final journey to the other side. The life we had led for years – the life I described to my community in the updates I sent out – also dominated my consciousness. What I felt when I remembered these things was bereft – of Timmi, and of the life I had built around her. What made this emptiness worse was the fear that I would never again remember Timmi as she was before the cancer took her over, Timmi as her essential self. The prospect was truly frightening, because it threatened me with the total loss of my daughter.

Little by little, though, I've become able to see her again in my mind’s eye as I knew and loved her before she became ill. The lively Timmi with the dazzling smile. The impish and witty Timmi, with a ready answer to almost anything anyone said to her. The sensitive and perceptive Timmi who from an incredibly young age could read a poem and see the poet’s soul reflected there. At first these memories were terribly painful. But over time they have begun to bring with them a sense that some parts of her are still with me. When I see a dazzling little girl, Timmi's sweetness is reflected there. My youngest daughter, Aimee, shares Timmi’s facility for snappy answers. When my family reads poetry together at the Shabbat table, I think of the kinds of things she would have said, and it warms me. There are now so many good things that remind me of her.

Praying at synagogue on Rosh Hashana, I felt Timmi from many directions. When I looked forward, I saw the beautiful parochet (curtain for the ark that contains the Torah scrolls) that we had an artist in our community make in Timmi's memory for use during the High Holidays. Its theme is the creation of the world, which according to Jewish tradition occurred on Rosh Hashana, but which is also described in the verses Timmi read in synagogue at her Bat Mitzva. When I looked down at my prayer book, there was the inscription she had written. When we read the Torah portion for the first day of Rosh Hashana, which contains the story of Hagar, Sarah's maidservant who bears Abraham's child, I remembered how Timmi had chosen to play Hagar in one of her school drama performances. When I looked beside me, I missed terribly having her sit next to me as she used to, but felt grateful to have had her there for as long as I did. And all around me I saw many, many good people who had watched Timmi grow up and who mourned her loss. Like me, these people remember the good times and the bad – not at all in in the same way and not nearly as strongly as I do, but still as a community that has lost a precious member. She will remain with them, in some small way, as she will with me.

While the gates of Heaven are still open to our prayers, mine is that God will comfort all those who have lost a child with the sweetness of memory, and bless them with their beloved child’s continued presence in their lives.

Ups and Downs

September 10, 1999
Well, Timmi has finally had her PET Scan and I'm happy to say that the results show a significant if not total remission. The doctor explained that a total remission was not to be expected because she got a fairly short course of chemo which was interrupted in the middle. The fact is that I had expected the scan to show at least some remission, because over the past several days Timmi had reduced her pain medication by half without any increase in pain, which is both good news in and of itself and is a sign that the size of the tumors has been reduced. The practical ramifications are that Timmi will get another identical course of chemo before the planned bone marrow transplant; the timing will depend on blood counts and probably Chagim.*

This week was an up-and-down one. Timmi started school feeing upbeat and energetic, but on Monday started feeling lousy. Wednesday she was unable to stay at school and came home quite early in the day. Today, however, she started feeling better again, so we hope that will last through Rosh HaShana.**

I wish the community and all of the Jewish people, as well as all the people of the world, a good and sweet year - at least a better year than the past one has been.

With much love,
S.

*Jewish High Holidays
**Jewish New Year

September 10, 2004
I am naturally the kind of person who has very strong ups and downs. In my earlier life, when I was happy I was ecstatic, and when I was unhappy, it seemed that the world had come to an end. I think that in my natural state, I approach the bipolar end of normal. But for years now I’ve spent a lot of my time in the emotional flatlands. I never thought I would, but now I miss the fluctuations that used to frustrate me so much when they seemed at times to control my life. Today, I’m actually grateful for my own tears, when they come.

The first time a boy said “I love you” to me, when my first daughter Lisa was born – at times like these, I felt as if I could barely contain my joy. When love was unrequited, when I was having serious problems with Don or one of the girls – at times like those, the depth of my sadness threatened to sweep me away. But in truly terrible times, as when my father died when I was a teenager, my tendency has always been to turn off, to retreat into a kind of fog where I feel nothing strongly in either direction. Above all, not to cry.

When we were first told that Timmi had cancer, after several months of failed diagnoses, I consciously felt very little. My mind was taken up by whom I should call, what arrangements I would need to make. When the next morning I left home with Don for the hospital in order to tell Timmi, I was extremely calm – got up, got dressed, got the other kids out to school, and left the apartment with my eyes still dry. The only sign that something was wrong was that I forgot to take my purse, something that “never” happens when I walk out the door. We told her, she cried a bit and then said that she had no doubt whatsoever that she was going to get well. I had no doubts one way or the other – I was just empty.

During the six years or so of Timmi’s illness, I learned to temper my emotions as a way of life, not just at overwhelmingly hard times. There were so many uncertainties. When she went into complete remission, when she survived the first bone marrow transplant, I was glad, of course, but couldn’t really rejoice – something terrible could still happen. I did allow myself to feel true relief and joy when she finished the automatic course of anti-rejection treatment after her first transplant, and it seemed that she was on her way to a normal life. She finished the treatment right before Simchat Torah, when Jews throughout the world finish the weekly reading of the Torah and start again with the first verses of Genesis, describing God’s creation of the world. Timmi read the Genesis portion for the women, and then recited “Birkat HaGomel,” the blessing on having survived a dangerous experience. I felt as if the world had been recreated for her and for us, and I thought my heart would burst. But that was the last time for many years that I felt intense joy.

By the time Timmi was unconscious and in intensive care, and we were told that there was nothing left to do but wait, I was running totally on automatic pilot. Every day I would come to see her and sing or talk to her, and I did what I could to take care of my other children. But my inner world was flat. One time a nurse asked me how I felt about the decision to let nature take its course. I didn’t know how to answer her, and mumbled something about her being out of pain.

After Timmi died, I stayed in my self-made desert, crying only sporadically and never for more than a few seconds at a time. I spent many months running away from my feelings and concentrating only on doing what I had to do. But there was only so far I could run, and I paid a heavy price for my flight. I became less and less able to function, and eventually reached the point where I was doing only the minimum to keep things going. My pain was always just underneath the surface, little by little chipping away at me. If I didn’t face it, I was going to turn into an automaton.

I went into therapy and finally began to really cry. And when I began to be able to feel the depth of my sadness, I also regained a bit of my capacity for joy. To this day, I still don’t cry as much as I need to (can you really cry “enough” for a lost child?). But I have cried enough now so that I am again able, albeit rarely, to feel pure happiness. Those rare moments of joy have come at momentous times in my children’s lives, as at Aimee’s Bat Mitzva last year and David’s Bar Mitzva this past July.

So I now welcome being able to feel strongly, even when it means dipping into the deep well of pain I carry within me since losing my daughter. In synagogue on holidays, I look forward to the “Yizkor” prayer remembering the dead, because I am most likely at those times to cry hard and long. It’s as if my tears are watering my parched heart. Without those tears, I know now, I’ll never again know real joy.

Back to School

September 3, 1999
This past week was relatively uneventful medically, except that Timmi again needed blood on Tuesday. The plunging hemoglobin is a problem, as it takes away her appetite and makes her weak and nervous. The good news, though, is that she went back to school on Friday without any particular problem (she didn't feel the greatest when she got there but got over it and stayed the whole school day). She took matters in her hands and got the girls in her class to organize among themselves to notice when she is absent, and bring her notes and assignments. Best to arrange that stuff from the first day!

This Thursday is the scan that will indicate whether this course of chemo did any good, so we're "holding our fingers", as they say in J.C. (Jewishly Correct) Hebrew.

Have a good week and if I don't get a message out in the coming week, Shana Tova* to you all.

*Happy Jewish New Year

September 4, 2004
This week, Aimee and Danny went back to school after summer vacation. As always, the new year brings with it the stress of uncertainty, together with the promise of a fresh start. For Aimee, the question is whether in tenth grade she’ll finally decide that school can actually do something for her, and is worth the relatively small effort that she has to put into it to do well (the first few days look hopeful). For Danny, who is starting eighth grade in a new school after transferring from one in which he was very unhappy, the main question is whether he’ll find a social group with which he’s comfortable. My own experience, and my family’s, has been that social issues at school are far harder to deal with than academic ones.

School was always an uncomfortable affair for all my children, but most so for Timmi. Even before she got sick, her strong personality, her pride and her insistence on what she thought was fair brought her into conflict with her schoolmates. She'd also clash with her teachers, always saying exactly what she believed, and would never back down if she thought she was right. Her impeccable honesty also got her into trouble. Once, her principal came in to make an announcement that the children thought was unfair. When she turned her back to write on the board, most of the children began shouting. When some of the kids (not Timmi) used some very rude language, the principal turned back angrily.
“Who shouted just now?” she asked. “Everyone who spoke now, raise your hands!”
Timmi was the only one in the entire class that raised her hand.
Although there had been a cacophony of shouting, the principal took advantage of the fact that someone had admitted to something, and punished Timmi. Only Timmi.
Yes, school, like life in general, can certainly be unfair.

Timmi was absent from school for a year, spending all of seventh grade on chemotherapy and a bone marrow transplant and its aftermath. While she was away, her classmates at first came in large groups to visit her in the hospital, relating mostly to each other. Quite soon afterwards, they stopped coming altogether except occasionally when prodded by their parents. During that time, no one thought of speaking to them as a group about Timmi’s illness and the fears for their own mortality it must surely have awakened in them. (This is routinely done in Israeli schools after terror attacks in the same city.) So when she came back to school, they weren’t ready for the reunion – and neither was she, although she tried to prepare herself.

When she started eighth grade, Timmi made a resolution that, for the sake of harmony, she'd be more accommodating than she had been in grade school – that she wouldn’t necessarily always say everything that was on her mind. Her year-long absence would provide her with the opportunity to start again, and this time she'd be more tolerant and not so quick on the draw if she felt slighted.

Well, there are some things that are simply not tolerable. That the other children didn’t know how to ask questions and talk to Timmi about her experiences over the last year – that’s understandable. After all, what in their experience had taught them how to do that? But when conflicts arose, as they inevitably do – even when you’re trying your best to keep the peace – then, suddenly, her special situation became relevant. “You’re using your illness as a weapon!” some of her classmates would say when angry at her. The teacher and school counselor did nothing useful – their interventions (which were in any case few and far between) sometimes made things worse.

(Danny went through something similar at his school. In conflicts with him, some of the boys in his class would taunt him with “Your sister has cancer!” and, later, with “Your sister died!” I wouldn’t have believed it had it not happened to my own son.)

One of the things I would do over if I could is that I'd find a psychologist or social worker who specializes in this field and pay her privately to come to Timmi’ school, talk to the children about cancer and their reactions to it, and teach the staff how to react sensitively to issues that arise between Timmi and the other children. At the time, I was too overwhelmed with Timmi’s medical care and my other children’s emotional health to think of doing that.

Timmi again had a fresh start in ninth grade, when she started high school with a new group of girls. This time, she resolved even more fervently that this time she was going to do it right. On the day of the Israeli Cancer Society’s annual fundraising drive, she spoke to the entire student body of the school. She described what a real difference the Cancer Society and similar organizations had made for her, and to other children with cancer. She even brought a videotape of kids riding on donkeys at a special summer camp she had attended, and stopped the tape as the camera focused on her. In the tape, she was very thin and bald, and looked like nothing so much as a Holocaust survivor.
“This was me,” she said, “and even when I looked like this, I could have fun like any other kid.”
She then added, “If anyone has any questions, I would be very happy to talk with you about my experiences.”
No one took her up on the offer. And if she brought the subject up herself, the other girls would look very uncomfortable and either end the conversation or change the subject as quickly as possible.

Timmi felt terribly isolated in school. After having faced death and gone through extremely painful and difficult physical and emotional experiences, she was in some ways mature far beyond her years. But at the same time, having missed out on the normal social experiences of children her age, she was much younger emotionally than her classmates. The girls would be chatting on about the things teenagers talk about, and she would sit there thinking, “What are they talking about? How can this be important to them?” With no one to share her most important life experience, she made no close friends. And when she was diagnosed with the relapse at the beginning of eleventh grade, she hid the fact for several months because she was so afraid of being once again seen as completely different.

Ironically, it was when her physical condition made it impossible to hide her illness any longer that Timmi finally began to have something of a group of friends. When she finally agreed to “come out” at school, I decided to make my own fresh start and "do it right" this time. I spoke to her favorite teacher and explained how to tell the girls in the class that Timmi's cancer had returned. I gave her very specific instructions to pass along to the students on how to act with a peer with cancer. I said they should relate to Timmi totally normally unless she needs help, in which case they should offer it as if it’s no big deal. They shouldn’t look at her with a mournful expression, but if she brings up the subject they should listen empathetically and ask any questions they have in a matter-of-fact way. In other words, go with where she is at any given moment. Being older now, the girls got it, and treated Timmi the way she wanted to be treated. By the time of my update, when she was starting twelfth grade, she finally had a peer group.

But Timmi never did make really close friends. Eighteen is still too young for a healthy person to know how to take the risk of that kind of closeness with someone your age who is facing death, and perhaps too young for a dangerously ill young girl to know how to transcend the deep difference between herself and her peers. All of our family has experienced something similar. Living through Timmi’s illness and losing her has made each of us feel alone – that there is no one but each other with whom we can truly share our feelings. How much more so must Timmi have felt?

Now, at the start of both the new school year and the new Jewish year, I pray for Danny – for all my family – that we'll make and deepen relationships with those who have not had our experience. I pray that what we went through won’t impoverish our ability to relate to other people, but will enrich it. Most of all, I pray that our pain will build not walls of isolation but bridges of empathy and love.