Wednesday, September 5, 2007

The Inspiring Story of T

One of the recurring topics of this blog has been end-of-life issues, and how patients and their families face this most difficult part of the fight against cancer. So far I’ve written about a family that wanted another clinical trial to be on, even when there was no potential for cure, and I’ve written about how I deal with the death of my patients. One patient who faced the end of his life with amazing maturity was a teenager named T.

T was 14 when we first met. He had been diagnosed with, and treated for, acute myeloid leukemia (AML) at another hospital. Unfortunately, less than a year after completing his chemotherapy, he relapsed. He needed a bone marrow transplant to survive, a procedure not available at his hospital, so his doctors sent him to me.

T and his family moved to Baltimore and began the next phase of his treatment. The drugs we usually use to treat relapsed AML didn’t work for him. Our second attempt at treating his leukemia made him much better, but was still not enough to cause a remission. We had some long, difficult discussions at that point, and T knew the odds were against him, but he decided to keep fighting, so we went ahead with the transplant.

His course was very complicated, and T spent several weeks in the ICU, but when it was all over, he was in remission! He did so well, in fact, that he was finally able to go home, after spending 8 months in Baltimore, away from his friends, his school, and his dog. I wish I had a picture to share of the smile he had on his face the day we told him he could go home!

After being home 2 months, though, T suddenly became very ill again, and had to be flown back to Baltimore and back into our ICU. His ICU stay this time was only a couple of days, and within 2 weeks he was discharged again. He and his family chose to stay in Baltimore for a while, to be sure he was going to be OK. Sadly, the next month he relapsed again.

At this point, T and his family were faced with an awful dilemma. On the one hand, they had the option to pursue aggressive chemotherapy and other treatments, with an almost certainty of making T terribly sick and only the slimmest chance of another remission, let alone a cure. On the other hand, they could choose hospice care – going home and only treating his symptoms to ensure he was comfortable while dying. A third possibility we presented to them was low dose chemotherapy aimed at slowing the progression of the leukemia but not really aimed at curing it.

The family thought long and hard about the decision. In private conversations I had with his parents, it was clear that they wanted to pull out all the stops and go for the cure, despite the long odds and difficult path.

But… they knew that T was the one who was destined to suffer if this was the path they chose, and despite his relative youth (he was only 15 years old by that time), they decided to leave the final decision to him.

And here is where T did something mature beyond his years, and in my mind, truly inspirational. He spoke with his parents. He spoke with his sisters. He knew what they wanted him to say. He knew they wanted him to keep on fighting, no matter what.

But he told us all he was done.

He chose quality over quantity of life.

All he wanted to do was go home, see his dog and his friends, drive his father’s truck on the beach, and get ribs from Rendezvous in Memphis, Tennessee. If he could do those things, he said, he could face death unafraid.

So that’s exactly what he did. Within 24 hours we arranged for his discharge from the hospital and transportation home. He went to Rendezvous (and sent me a t-shirt). He drove his father’s truck (he wasn’t 16 and didn’t have a license, but at that point did it matter?). He saw his friends and his dog. And he died three weeks later, in his own bed, surrounded by loved ones, in no pain.

Two weeks ago I was in Memphis and had the pleasure of eating at Rendezvous for the first time. The ribs were excellent (maybe the best I’ve ever had) but all I could think about while I was there was T, and how I hope that if I’m faced with a tough decision like he was, I can make the choice that’s best for me, regardless of what others want, just like T did.

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