Losing My Innocence

March 24, 2000
Now I'll give a fuller version of the latest news. As I wrote last time, Timmi is now (as of Monday) out of the hospital, the GVH having somewhat stabilized. Last Shabbat she was also at home for "leave", and it was really great - Timmi was in a really good mood, and not only was there no friction between her and her siblings, but they all got along fantastically and truly enjoyed each other's company. It should always be this way, as I'm sure many a parent has said even in normal circumstances.

The good mood has kept up, despite physical ups and downs since Monday. It seems this GVH stuff isn't so easy. But we knew that GVH is unpredictable, changeable and not so easy to control, so the main thing is that we are now in the place we wanted to be. As I mentioned in my last update, Timmi is experiencing less pain and so it may well be that the GVH is fighting the cancer as we had hoped and continue to hope it will. She has even reduced the dosage of her narcotic patches, which is always a good sign.

The problem is still that it is difficult for Timmi to drink; on the one hand, she wants to drink because her mouth is always dry, but on the other hand drinking quite often makes her feel nauseated. So far, it seems she's drinking enough not to dehydrate, but she has to be very careful in order not to repeat the kidney failure she had last time she dehydrated, because of the cyclosporin that she must take to regulate the GVH.

Yesterday, though, I was out with her (in the Malcha Mall, not my favorite place but a place outside the house) for an hour and a half, and it didn't exhaust her. Another good sign!

She is now going to try and complete at least one matriculation exam, so that she'll have less to make up next year. Altogether, she is now into planning the next steps, when after a few months she will have a fully functioning immune system, and hopefully the GVH will be stable enough for her to resume a fairly normal life.

Shabbat Shalom.
Love,
Sara

April 8, 2005
I’ve been reading and rereading this last update for the past several days, trying to get a handle on what to write for this post. There are so many possibilities. On a happy note, I could focus on my gratitude that Timmi’s relationships with her brothers and sisters were ultimately strong enough to weather the tensions that resulted from her illness. I could write about Timmi’s drive to live her life as fully as she could, despite her heavy and constant physical and emotional difficulties. But as I read the update today, the happy experiences that I recorded there are filtered through my knowledge and memory of the events that came afterward. I know how this story ended, and in many ways that knowledge has profoundly changed how I look at the world.

When I opened my computer at work Thursday morning, I found a Power Point presentation a client had sent me. Against a background of beautiful color photographs of peaceful natural scenes, it tells the story of Omri, a three-year-old Israeli boy. Some time ago, Omri began to experience unexplained pain in his feet, which persisted and then spread to other parts of his body. He soon began to lose his sight as well. As soon as I read this description of Omri's symptoms, I had no doubt as to where the story was leading. Omri is suffering from a rare and aggressive form of lymphoma that has metastasized to his brain, spinal cord and bone marrow.

It was very hard to keep reading Omri’s story, but I found myself unable to close the file until the presentation ended. I learned that although Omri had enjoyed a brief remission, his cancer relapsed and metastasized while he was still in active chemotherapy. His family is now trying to organize a bone-marrow drive to find a donor for a transplant (no potential donor on the international database matches his), and is seeking both potential donors willing to be tested, and contributions to finance the tests.

Since Thursday, I’ve been haunted by a persistent sadness - for Omri and his parents, but also for the way I myself now read his narrative. Once, I would have followed Omri’s story with the intense hope that a way could and would be found to save his life. I would have thought, modern medicine is so amazing – if only a matching donor can be found, Omri still has a chance! But from where I am now, that is no longer possible. The quixotic optimism that drives Omri’s parents to seek to raise a million dollars in order to try one last, very far-fetched possibility reminds me too much of my own carefully cultivated hopefulness in the face of the ever-increasing probability that we were going to lose Timmi. I just can't summon up that kind of trusting hopefulness any longer. When I lost my daughter, I also lost a great deal of my innocence.

All those good signs that we held onto! Timmi’s periods of energy, her fighting spirit, her fierce will to live – all these were supposed to increase her chance of beating the cancer. And all those promising therapies to try! New experimental treatments that had shown good preliminary results. Natural foods and supplements that would strengthen her immune system and help it fight the cancer. Like naïve children hearing a bedtime story, we never completely stopped believing in the possibility of a happy ending, however improbable we knew such an ending to be as time went on without those therapies delivering on their promises, without those wonderful signs turning into concrete reality.

I wish I were not completely certain that, short of a true miracle, Omri - like many, many other completely innocent children - will soon be joining Timmi in the next world.

I wish I were still able to believe in fairy-tale endings.