Timmi had another mixed week this past week. On Shabbat she developed a low-grade fever and so we brought her to the hospital on Sunday. The fever itself rose very slowly throughout the week, despite our giving her intravenous antibiotics three times a day at home, and it looked like we might have to hospitalize her, but Thursday evening the fever dropped, and was gone by Friday. Also, the blood cultures taken on Sunday were negative, so we discontinued the antibiotics and, of course, Timmi stayed at home.
On Sunday we spoke to her oncologist, Professor Cividalli, together with her doctor from the bone marrow transplant department, Professor Or, about Timmi's ongoing problems (lack of sleep, nausea and vomiting, weakness and intermittent pain). Professor Or is of the opinion that most if not all of these problems are the result of too much GVH, although there is no way to be sure (at least the pain could be from returning tumors). He and Professor Cividalli decided to try giving her Thalidomide, which is effective against nausea, helps with sleep problems and has also been approved for use against GVH. (When we pointed out that GVH is what we want, Professor Or said that if what she has is GVH, she has too much of it.) In addition, it may theoretically also be somewhat effective against some kinds of cancer. He called it a "miracle drug".
She took the first dose Sunday night, and Monday there was a very dramatic improvement - she had no nausea and in fact ate several times during the day, and she had much more energy and significantly less pain - we went to the Malcha Mall and she bought several pairs of pants and shirts. I was beginning to believe that we were indeed seeing the effects of a miracle drug, but then that evening she started having serious pain again. The next two days she was again very tired, and did have some pain, though less. And while the nausea did disappear, eating seems to cause bad stomach pains. Since then things have been up and down - while generally she feels better, she is often weak or in stomach pain, and the other pains have not totally disappeared. However, I know that the medicine was not really supposed to produce an instant miracle, so we still hope that Timmi's condition will improve steadily, even if there are ups and downs along the way.
The fact that her condition did at least seem to respond to the Thalidomide makes me hope that maybe we really are seeing GVH rather than a relapse. Then, if we can just help her feel well enough, she may really be able in the foreseeable future to resume her life, if only on a limited scale.
Shavua Tov to all.
Love,
Sara
November 18, 2005
Just about everyone longs for a miracle at some time. The poor man dreams of finding that pot of gold at the end of the rainbow. The lonely woman fantasizes that one day she’ll kiss the right frog, and he’ll turn into a prince. Entire peoples believe that God will smite their enemies, if only they pray fervently and faithfully, and live pure enough lives. And the parents of a mortally ill child cling to the hope, however ephemeral, that she will be restored to full health against all the odds - whether through modern medicine, alternative treatments or prayer. After all, Jews, Muslims and Christians alike were raised on accounts of God’s direct intervention in human affairs; the Matriarch Sarah’s pregnancy in her old age, the parting of the Red Sea, and Muhammad’s ascension to heaven immediately come to mind. Why shouldn’t we expect miracles?
The sages of the Talmud, however, warned us that the age of human ability to converse directly with God – that is, prophesy – had already come to an end before their own time two millennia ago. They taught that we may not rely on miracles - or what we usually mean my "miracles" - that is, Divine actions that dramatically intervene in the course of nature. At the same time, however, they called upon us to acknowledge the daily miracle of the continued existence of the natural world. Since my journey through Timmi's illness and death, I’ve come to appreciate the profound wisdom of that philosophy.
While Timmi was ill, we heard tell of miracle-working rabbis, usually Cabbalists, who were said to cure hopeless illnesses and conditions through prayer. More than once well-meaning people offered to speak to a particular rabbi on Timmi’s behalf, but Timmi was adamantly opposed. (The reason she gave was actually quite funny. She had a friend in grade school who'd suffered for a long time from constipation, until she received a blessing from one of the more prominent mystics in Israel - upon which her trouble disappeared. After that, medical mysticism was indelibly associated in her mind with the results, so to speak, of that particular intervention.) I myself am very much the rationalist, and mysticism - especially Cabbalah - generally leaves me cold. But I always wondered whether it might have been worth trying to convince Timmi that she had nothing to lose by allowing others to seek the blessings and prayers of spiritual leaders. (And joking aside, when you come down to it, her friend really had been healed of a serious problem.)
I changed my mind after hearing the stories of other bereaved parents who had in fact gone to seek a blessing from a “holy” man, sometimes more than one. They described crowds of desperate people lining up for hours for the chance to spend a minute in the mystic's presence, and then being hustled out after receiving a few brief words for their children. The experience left them feeling frustrated, distressed and even somewhat humiliated. But far worse was their deep pain at seeing their hopes dashed as their children, after being blessed by men who purportedly possessed supernatural powers of prayer, nonetheless continued their inexorable and final journey away from them. Some simply felt angry at those they saw as having disappointed them. Others, however, became bitter and disillusioned, and lost the faith that had sustained them until then.
As I’ve written more than once (see “Choosing Life, Choosing Faith,” August 2005, and “Loving God: A Partial Response,” September 2005), my faith is too precious to me to risk losing in a gamble on what God will decide to do at any particular moment. And I'm certain that the surest way for me to lose that faith would be to expect Him to perform miracles on demand. I certainly don’t know God’s mind; I haven’t received any postcards from Him, either. What I do know is that God has been an enormous source of the strength and resilience that have enabled me to face the suffering that I’ve both experienced and seen others experience in this world. And my faith enables me to feel thankful for my life despite that suffering, and to look toward the future with hope.
This sense of thankfulness is nurtured by the Jewish tradition. When we awaken in the morning, the first thing we are meant to do is thank God for returning our souls to our bodies after sleep. We then go on to recite a set of benedictions expressing our thankfulness to Him for making us who we are, and for all the blessings that He has bestowed on us: our bodily integrity, our eyes to see, our ability to stand and move about – even our clothes and our shoes.
In our morning prayers, we bless God for "in thy goodness [renewing] the work of creation every day, constantly.”* We also thank Him "for our lives which are in thy charge, for our souls which are in your care, for thy miracles which are daily with us, and for thy continual wonders and favors - evening, morning and noon." We are not meant to take the world's continued existence for granted. Every day that we awaken to find that the sun is still in the heavens, and the earth is still teeming with all of its myriad forms of life, is a new gift to us from the Creator of all life.
On Shabbat, we add special words of praise and thanks when we conclude the set of psalms that we recite as a preliminary to our prayers. It contains some of my favorite verses:
Were our mouth as full of song as the sea [is with water],
And our tongue with ringing praise as its roaring waves;
Were our lips full of adoration as the wide expanses of heavens,
And our eyes sparkling like the sun or the moon;
Were our hands spread out in prayer as the eagles of the sky,
And our feet as swift as the deer –
We should still be unable to thank thee and bless thy name,
Lord our God and God of our fathers
For one one thousandth of the countless millions of wondrous favors which thou hast conferred on our fathers and on us.
Life, then, is itself an ongoing miracle, for which the Jewish tradition teaches us to feel a deep sense of gratitude. True, in the aftermath of Timmi’s death there was a period during which I was unable to be thankful for anything; it truly felt as if I had no blessings left to count. But simply saying my morning prayers of thanks, day after day as the months and years have passed, has helped rekindle my sense of gratefulness for the all I’ve been given. And I have indeed been given a tremendous amount – my health, my friends, my community and, most importantly, the love of a wonderful man and seven amazing children.
Our sages, were they here today to hear my story, would not be surprised in the least if I were to tell them that God did not perform a miracle enabling Timmi to remain in this world. But I know that they would be thankful together with me that I was given the miraculous privilege of bearing, birthing, and spending eighteen precious years together with her.
*Translation of all prayer verses by Philip Birnbaum, Ha-Siddur Ha-Shalem.
