December 30, 1999
Timmi's bone marrow transplant took place in two parts, on Sunday and on Monday. The transplant itself went exceedingly well, with no adverse effects for Timmi. This was a true relief for all of us, as we remembered how during the first transplant in 1995 Timmi felt so awful that she just slept through it in a fog of morphine. This time, though, she received the cells and didn't feel a thing. The donation was harder on Shari than we had expected, though - her veins are not so great, and so while the time she spent on the machine separating her bone marrow cells from the other parts of her blood was better than having the marrow removed the old-fashioned way (directly from the bone under general anesthesia), it was quite uncomfortable for her. The good part for her, though, besides her happiness at being able to contribute to Timmi's treatment, is that once off the machine the second time she immediately started to feel better; now she is fine. Lisa, on the other hand, had pain for several months after donating in 1995.
Timmi has so far continued to feel quite impressively fine, with some weakness and a little pain (which is easily taken care of by the morphine) but otherwise quite alert, with a good mood and even a good appetite. Things should just continue this way.
The next stage is to see next week whether her blood counts start going up. Actually they are not at zero now, but my understanding is that they can still fluctuate, and what we will be looking for is a steady upward trend. With the rising blood count we will be looking for signs of GVH (Graft Versus Host Disease), of which we want enough to fight the cancer but not too much, which could be fatal or seriously disabling.
Anyway, as I mentioned our main feeling concerning the immediate situation is relief, and hope that the process will continue not to be too hard on her.
Shabbat Shalom -
January 14, 2005
It’s toward the end of Friday afternoon, and Shabbat is approaching. Shari is cleaning the house, and the radio is playing oldies, both in Hebrew and in English. Aimee is also at home now, having made the soup while I did the other Shabbat cooking. Don just returned from the gym, and is beginning to braid the Challah* that he bakes every Friday. Just a humdrum kind of day, with nothing special or exciting happening. But I feel a strong sense of serenity and wellbeing, and I know why. It’s because I’m sharing the day with my family.
When I was growing up I never dreamed that one day I’d have seven children. So much work! So many problems to worry about! So many complicated family relationships! But what I didn’t know then was how each child would enrich my world. Coming from a rather traumatized family, I had no idea of the extent to which my home would become a haven. Our home has been a demanding haven, with problems and tensions that we can’t always resolve. But it’s also been the only place where I've been able to find true peace after the earthquake of Timmi’s death.
Timmi, I’m told by her therapist, felt very much surrounded by love in the family. There were many times when the cancer and the medications she took to fight it caused her to become depressed or anxious, or otherwise negatively affected her emotional state. Then, she would sometimes fall into despair and feel abandoned by the world. But the love she received from her family helped her through these times. This was even more important when she felt cut off from other girls her age. At home, she could always express herself freely, even if what she had to say sometimes was very, very hard to hear. She didn’t have to worry that she’d scare us away.
It’s common to speak of families as “sharing blood,” but the metaphor literally described our experience. Three(!) of Timmi’s sisters had bone marrow that matched hers – Lisa, Shari and Elaine. Lisa and Shari were able to give Timmi an extra chance at life by substituting their healthy bone marrow for hers. Both felt it was a true privilege. Elaine was very disappointed when we didn’t use her bone marrow in either transplant, and Sheila, Aimee and Danny were upset that their bone marrow didn’t match Timmi’s. All wanted so much to contribute part of their own bodies to our attempts to save her. What they didn't understand then was that just by loving Timmi they were already doing a huge amount to sustain her, even if her despair with the world sometimes spilled over into her relationships with them.
After Timmi died, and we sat for seven days in a house that sometimes felt like Grand Central Station – with people coming all day to bring us food, to talk, and just to sit with us – those times that we had alone together felt like precious islands of tranquility. In fact, there was a very long period when the only moments I felt any kind of peace at all were when all my surviving children were present together with me in the house – preferably in the same room. The children felt the same – as Lisa said, we felt safe when we were together. In many ways, that's still how it is for me.
True, it’s when we’re all together that I feel Timmi’s absence most. And it's a terrible thing not to be able to look around me and say, here I am with my whole family. Our family can never again be truly whole. But I believe that when people have deeply loved each other, each leaves a part of herself with the others. Just as Lisa and Shari shared with Timmi the deepest part of their physical selves, each of us gave Timmi a part of our spiritual core – and received a portion of her spirit in return. And so, paradoxically, it’s when all of us are together and Timmi’s absence is felt the most painfully that I feel – as my friend Robert Avrech says of his own precious son Ariel in his blog Seraphic Secret** – that her absence most becomes presence.
Of course, as in any family, we and our children live with ongoing tensions and arguments, and Don and I spend a great deal of time and energy taking care of the children’s physical and emotional health and worrying about their future. These problems are all the more complex, given that there are so many different lives and relationships to take into account. But – and this is the most important thing – each member of our family carries a piece of all the others, including Timmi, inside. And so when I'm with Don and my children, who shared such a deep love with Timmi, I feel most deeply the presence of that part of her essence that she left behind.
*Challah – loaves of special bread that Jews eat at their Shabbat meals.
** See the Links section of this blog.