Hope: My Story

December 1, 2000
I wish I had a better report to send you. Except for Sunday, which was a very good day for Timmi, she has been feeling quite horrible, both physically and mentally. For the last few days of last week we attributed her state to the fact that on Tuesday we removed the last narcotic patch (which in and of itself is actually good news), and believed she was experiencing some of the symptoms of withdrawal. This seemed to be confirmed on Sunday, when on the fifth day after the removal of the patch she felt significantly better, even ate a small amount and kept the food down. But Monday she felt terrible again, and it has not really let up since. She is quite weak, sometimes needing to get around even in the house with a wheelchair, dozes off during the day but can't really sleep at night (even if she hasn't slept much the previous day), vomits two or three times a day (including at night, which is a new phenomenon), experiences various pains in various parts of her body and finds it hard to concentrate on doing anything. This situation, not surprisingly, depresses her and sometimes she feels quite desperate about it. Such a long time and no end in sight.

It has been suggested that at least some of Timmi's symptoms may be explained by neurological problems, and next week we will discuss the possibility of further tests next week, with her oncologist. She has been tested neurologically several times in the relatively recent past, but there may be more extensive tests that may be done.

It is terribly frustrating to Don and me not to be able to do more for her. Sometimes it feels to me, at least, as if I can't do anything at all for her, other than "maintenance" - giving her her medications, taking her to the hospital, connecting her to her TPN (the intravenous nutrition). I know how frustrated many of you are by your inability to help us - so we can all understand each other. This, of course, is of some help to me but none to Timmi.

I hope my next update will be more upbeat. In the meantime, Shabbat Shalom.

December 8, 2000
Timmi is now in intensive care, and has been for the past two and a half days. She entered the hospital Motzei Shabbat because of extremely frequent vomiting and a low fever. Her condition did not particularly improve on Sunday or Monday. Then, Monday night, her fever shot up, her blood pressure dropped and she started having serious trouble breathing. Tuesday morning a very large amount of fluid was drained from one of her lungs, and by the middle of the day she was in intensive care for respiratory failure, as even with an oxygen mask she was not getting enough oxygen.

Since mid-day Tuesday, she has been on a respirator, and under general anesthesia. (At least she is not suffering.) The X-ray of her lungs looked a bit better yesterday than it did Tuesday, and a bit better today than yesterday. Likewise, she has needed progressively less oxygen yesterday and today. On the other hand, her blood pressure is still not stable without a constant drip of adrenaline, although she is now getting a somewhat lower dose than she got at the beginning.

She will remain anesthetized and respirated at least until her blood pressure stabilizes, and also until her lungs look good enough in an X-ray to take out the oxygen tube. Once that happens, the tubes will be removed and she will be allowed to wake up.

Although all the cultures (and, thankfully, the biopsies) were negative, the most likely explanation for the respiratory failure is pneumonia of some kind; it looks viral. Although most of us usually sigh with relief when we hear an infection is "only" viral, in this case it is more worrying than if it were bacterial. Bacteria can be taken care of with antibiotics; viruses can not. And we have learned from a recent test that Timmi has just about no immune system, so viruses are scary. The fact is, though, that the overall picture has improved a bit from day to day, so things are not nearly as scary as they could be.

Her condition is defined as serious but stable.

Don will spend Shabbat in the hospital; I have been going every day for a few hours to speak to her and play music for her through earphones, in the hope that something is registering and that these things will help her. It's hard to be there for more than those few hours, though - intensive care is certainly very different from the pediatric, and even the bone marrow transplant, wards. I'm also not permitted to be there when any medical procedures are being performed. So this is all quite new to me.

Shabbat Shalom to all of you.

December 8, 2000
As I know my last message was very worrying, I wanted to let you all know that Timmi's blood pressure has now been stable for several hours without medication. As a result, the dose of morphine that she is receiving as anesthesia is being slowly reduced, and the doctors hope to be able to wake her and take all the tubes out within the next 24 to 36 hours. So maybe she'll be out of intensive care by Sunday; that would be very good indeed.

Thank you to everyone who replied with love and support to yesterday's message. I truly appreciate it.

Love and Shabbat Shalom to you all,
Sara

December 8, 2005
All human beings know what it is to hope, and many know what it is to “hope against hope.” But I can say now that I did not understand just how stubborn hope can be until Timmi’s journey through illness and, ultimately, out of this life. I discovered that, amazingly, hope has a wayof leaving some of itself behind even when it seems to have deserted us for good.

When Timmi first became ill, it was easy to hope. The doctors spoke of a 90 percent recovery rate for childhood leukemia, there was no reason to think Timmi would be on the wrong side of those statistics. And we had spent six months trying unsuccessfully to diagnose Timmi’s ailment. When she was finally hospitalized for tests, the medical staff was so puzzled by her combination of symptoms that I became convinced that she was suffering from a new and deadly virus without a cure, something like AIDS. So even though the diagnosis that every parent dreads - leukemia - naturally planted its seed of fear, in a bizarre way it was a relief to hear that Timmi was ill with a well-known, potentially curable disease.

My near-complete optimism lasted through Timmi’s first series of treatments and her first bone marrow transplant. When the initial side-effects of the transplant had subsided, and Timmi seemed well on her way to full health, it felt almost like starting a new life - as if Timmi were once again being born. Then came the first GVH, reminding us that things weren’t quite over. The GVH dried her itching skin until it cracked. To prevent the GVH from getting out of hand, doctors prescribed steroids, which bloated her and kept her from sleeping. The medication got rid of the rash, but also suppressed the GVH, so she had to stop treatment, which brought back the rash. And so on in a seemingly endless cycle. But throughout this period I still felt very hopeful, because after all GVH would fight the cancer; just so long as it didn’t get too strong, it was really a good thing. The medical problems that she experienced for the next couple of years made her life and ours difficult, but at least we had her with us – and that was the important thing.

Things were very different the second time around. Now, the statistics were unforgiving. No more 90 percent - or even 10 percent - cure rates; we were told that no one had so far survived a relapse of cancer after a bone marrow transplant. Still, the doctors told us, almost every day there were new advances, promising experimental treatments. I guess that was when we entered our Fool’s Paradise (see “Knowing and Not Knowing,” September 2005), when we latched on to every hopeful word we heard from Timmi's doctors, willfully pushing things we knew out of our consciousness.

As treatment after treatment failed to get real results, I could feel my optimism shrinking together with Timmi’s options. But the morning Timmi went into intensive care, I was amazed to see just how much of my hope still remained. When I came back to the pediatric ward to get Timmi’s things after accompanying her to the ICU, one of the nurses came up to me and asked how I was doing.
“I’m fine,” I said. “I understand that Timmi’s in the ICU because she needs to be on a respirator for a few days until we get her lung infection cleared up. It’s good she’s being sedated, because it would be terrible for her to be awake while she's on a respirator.”
“It’s really good you’re taking it that way,” the nurse said.
“What do you mean?”
“Well, most parents get very upset when their child is taken to intensive care, because of what that so often means.”
What that means? I asked myself. Oh my God, is she saying -
“No, I don't think about it that way,” I said to the nurse, and went out the door.
I looked back at the other parents in the room, and I could tell they knew exactly what the nurse had meant. I saw in their eyes that watching the staff wheel Timmi out of the room to an unknown fate had frightened them deeply, for Timmi and for their own children.
This is just a regular medical procedure, I repeated to myself.

During the month Timmi spent in the ICU, I fiercely held on to my optimism as time went on and the doctors tried day after day to bring her out of sedation. I came every day to talk and sing to her. I told her that we all loved her, and how happy we would be to be able to speak with her again when this was over. Then, after a bit under three weeks, the doctors decided that there was no use in trying, that Timmi's lung infection was incurable and that she would never be able to safely come out of sedation. When they told us of their decision, and that it was now a matter of a few weeks at most, I thought my hope was used up. During that last week and a half, I spent my visits to the ICU staring at the monitor that displayed her vital signs. At home, I spoke with the children and tried to helped them prepare for what was coming. There was no longer any doubt, no longer any hope. Or so I thought.

But when that phone call came, the shock was so great that I felt as if the police had called to tell me that Timmi had been killed in an accident. All those years of knowing that Timmi’s death was possible, then probable, then inevitable – none of it had prepared me for the moment my worst nightmare came true.

It was only then that I realized that hope had never really left me, that it had lived on until the very moment my daughter was finally gone; Timmi and my hope for her had died together. Only with its loss was I able to see that – incredibly – it had been present all along, sustaining me through times I would not wish on any other human being. The Greeks had it right - when Pandora opened the box and let loose all the catastrophes and tragedies that plague this world, she also freed Hope, the gift that enables us to go on in the face of the seemingly unfaceable. Without it, I could not have survived the knowledge that I was going to lose my child.

Even more amazing than the stubbornness of my own hope was the tenacity of Timmi’s. I’ll write about that in my next post.