Sunday, July 31, 2005

Choosing Life

July 14, 2000
Timmi returned home from the hospital today, after a week's hospitalization. In addition to the treatment that she got for her cancer, she also needed intravenous antibiotics because she developed a fever last Thursday morning; it turned out she had a bacterial infection in her blood as well as pneumonia. For the first few days, in addition to receiving a constant, high dose of morphine for the "breakthrough" pain she was experiencing, she was constantly attached to oxygen and had somewhat worryingly low blood pressure. After several days of antibiotics, however, she could be taken off the oxygen and her blood pressure went up somewhat.

For the first several days she was asleep most of the time from the morphine, waking very briefly once during the day and for a couple of hours at night; when she was awake she needed extra doses of morphine to deal with the pain. Gradually, the pain lessened when she was awake and she could even take a few steps, with support. As the chemotherapy started kicking in, her pain was reduced and so was her dose of morphine, enabling her to be pretty much pain-free when she was awake.

On Wednesday (yesterday) she received the T-cells from Shari that we hope will reverse the present oncological trend. The doctors gave her half of the cells they harvested; if she does not develop GVH within the next three weeks, she will get the other half, with possibly more doses after that.

Once she had received the cells, and because her pain, blood pressure and oxygen level were improved, she could be released. She is now connected to a small "home" morphine pump; we will reduce or increase the flow of morphine as needed. Because of the chemo, there is a pretty good chance that she will be able to mostly or entirely go off the morphine by next week. In addition, we will be giving her intravenous antibiotics at home for the next ten days. Of course, if she gets a fever or if the GVH kicks in seriously, she will return to the hospital.

I am quite exhausted after the past eight days. But it is a real gift to see Timmi out of pain, after the nightmare of last week's breakthrough pain (this is pain that cannot be effectively controlled even with high doses of narcotics). I hope we all never ever have to go through this again. Nor anyone else, for that matter, but of course given the world we live in this last wish is unrealistic.

Shabbat Shalom to all.


July 21, 2000
After three difficult days at home, during which Timmi was less and less able to drink or eat, she re-entered the hospital on Monday with extremely low blood counts (this is normal after chemotherapy) as well as some dehydration and serious pain in her stomach. The pain is also apparently a side effect of the chemotherapy. She has also developed a fever (to be expected in light of the low blood count), and is generally feeling quite bad. The stomach pains continue whenever she is awake, and she can't drink more than a small amount at a time.

The good things about the hospitalization are that she gets intravenous fluids, nutrition and morphine, the last of which she controls herself with a pump; she gets a steady background dose but can also add to it if she hurts. This is what she does when the stomach pain gets bad; usually the extra dose puts her to sleep. But if the choice is sleep or pain, sleep is obviously preferable. Unfortunately even the pain experts don't know how to keep her awake and comfortable at this point.

A worrying thing is that she still sometimes has pain in her knees, a sign that the chemotherapy shrunk the tumors but not completely. Therefore, it is possible that she will start a new round of chemo once she has recovered from this one. Also, she will get more T- cells if she does not develop GVH within the next couple of weeks.

We are all quite exhausted. Timmi is also quite discouraged, having seemed to progress so many times only to be thrown back again. She was very depressed when she first entered the hospital on Monday, and on Tuesday as well but Tuesday evening perked up a bit and since then has been able to watch TV and have normal conversations during the brief times that she is awake and not in too much pain.

There is no knowing when she will be released, or even whether she will be released before the next round of treatment, if there is one. So we've got at least another grueling week ahead of us. Thank God for Shabbat, though!

Shabbat Shalom to all.


July 29, 2005
In the fifth book of the Torah (Deuteronomy 30:19), God commands us to “choose life.” Many, perhaps most, people do not think of life as an option; rather, they live it unthinkingly, and without appreciating how very precious it is. But more than once in my life I have been faced with this choice, and never more so than when Timmi became ill and after she died. In both cases, the choice was not at all a simple one; but both times, I ultimately followed the Torah's command. I have not regretted either choice, and am extremely grateful that God in His mercy gave me the strength to choose correctly.

When Timmi became ill, Don and I were faced with extraordinary life-or-death decisions for which nothing in our previous lives had prepared us. Should we, for example, take Timmi abroad for second or third opinions, or should we simply trust her doctors in Jerusalem? Should we try “natural” alternatives or stick to chemotherapy, despite its horrendous side-effects and the fact (toward the end) that its effects were lasting for shorter and shorter periods, even as it was wearing her body down?

Questions such as these were relatively easy to answer at first. When Timmi was first diagnosed, we were told by a doctor of both Western and Chinese medicine that Timmi’s chances of cure were much higher with conventional medicine; the issue of alternatives immediately became a non-question for us. We very quickly saw that Professor Cividalli, Timmi’s oncologist, was both a true mentch* (I thought of him as a tsaddik**) and a world-class doctor, and found that any time we did consult specialists at prestigious institutions in the U.S., they invariably replied that they would choose exactly the treatment Timmi was receiving. Therefore, we didn't feel the need to disrupt her life and the family’s by taking her abroad for medical consultation (though I did take her to Paris for sheer pleasure; see “Paris,” November 2004).

As the cancer came back after each round of difficult treatment, in each case a shorter time after the treatment ended, living became harder for Timmi. On the one hand, each round gave her, and us, new hope. Perhaps this time the treament would work, and we would finally beat this thing - or at least keep her alive until the next medical breakthrough. But as time went on, it seemed increasingly likely that each treatment would merely cause her to suffer once again the chemo's intense side-effects and the next painful relapse. Was I commanded - and could I bear - to keep consenting to treatments if a longer life would only bring Timmi more agony?

Just about five years ago, after countless courses of chemotherapy and two bone marrow transplants, Don and I found ourselves facing the most difficult choice yet. Timmi’s doctors told us that there was only one option left to try. They could give her a highly experimental treatment - additional T-cells from Shari, but without any medication to moderate the effects of the GVH*** that the treatment might cause. The treatment carried the risk that uncontrolled GVH would kill Timmi, perhaps slowly and very painfully. But without treatment, the cancer would certainly kill her, and there would be no relief from the pain she was suffering at that time, other than through the fog and sleep of morphine.

The evening after the doctors gave us this choice, Don and I went for a long walk in Jerusalem’s Botanic Garden. We walked though the garden’s Australia section, and back through its North America section. We then sat down on a bench next to the lake near the garden’s entrance. Against the surreally peaceful sound of frogs calling from the lake, and the unbearably sweet fragrance of the garden's flowers, we finally faced squarely the overwhelmingly painful question we had to answer. What it came down to was whether to consent to a treatment that held a tiny prospect of success, but could also go wild in her body and cause her immense suffering - before eventually killing her. (We had not even been promised that the proposed treatment could reduce or eliminate Timmi's pain from the cancer.) The alternative was to spare her the risk, knowing that our decision would mean admitting defeat, and try our best to control her pain for the next few months until her certain death. A Hobson’s choice by any measure.

We struggled with our fear, our hope, and our despair, casting about for some guidance. How were we, as parents and as God-fearing Jews, to act at such an extreme and extraordinary time? I remembered how Professor Cividalli, who himself suffered from a chronic leukemia, had told me that he had hesitated before opting to undergo his first bone marrow transplant about a year after Timmi’s first transplant, after seeing patients die painfully from GVH. In the end, he had decided that any risk was worth the hope of life - and became the oldest patient ever to receive a bone marrow transplant in the hospital’s history. He had chosen life. He was not an observant man, and so it may be that he did not make his choice on the direct basis of the Torah's command. I believe, though, that he did so because as Jew he had been raised and taught to believe that every human being was created in God’s image and that, consequently, life itself - whatever its risks - is precious and of infinite value.

Don and I decided that the hope the new treatment offered - a possibility (however small) of a significant remission, together with relief from Timmi’s physical agony, was worth the risk. We both felt that although we might not have made the same decision had our own lives been at stake, we could not possiby act in a way that we knew for certain would end Timmi’s.

At the time we were agonizing over what to do, Timmi was barely conscious because of the morphine she was taking to ease her pain, and so we could not directly ask her how she felt about the risks of the T-cell treatment. But after we had made our decision to consent to the treatment, Timmi herself strengthened our resolve. When I entered her room just as she was about to receive the T-cells, and as she was sinking into a deep morphine sleep, she opened her eyes and looked at me.
“Ima,**** I’m afraid,” she said.
“What are you afraid of?” I asked, thinking she would say that she was afraid her pain would never end, as she had many times before.
“I’m afraid I’m going to die,” she answered, and slipped into sleep.

Timmi's reply told me all I needed to know. As much as she had suffered up to that time and as much pain as she was in at that moment, Timmi had unhesitatingly chosen life.

To be continued.

*Mentch - Literally, “a person” in Yiddish; a fine human being.
**Tsaddik - A righteous and saintly person.
***GVH - Grafts Versus Host Disease; see my previous posts for a fuller explanation.
****Ima - Hebrew for “Mom.”


Sarah said...

My God, Sara. This is gut-wrenching.

Thank you for having the bravery to write it and share it with your readers.

Alan aka Avrum ben Avrum said...

Dear Sara, ...

It is with very mixed emotions that I read your newest post; on the one hand, I eagerly awaited the current sharing and telling of Timmi's story as so lovingly and beautifully told by her mom-whilst on the other I weep for both you and Timmi Z'L as a parent who watched his son leave this world despite the frenzied efforts of the ER trauma team! So I thank you from the bottom of my heart that you tell this story and so well-that any and all-whose good fortune it is to have read it- will internalize its love and devotion, and as a consequence perform random acts of 'gemilus hasadim', acts of loving kindness, that we might make of this world a better place. I am

sincerely yours,

Alan D. Busch