Lily, Part II

We were all totally devastated.

Secondary AML, the disease Lily had just been diagnosed with, has about a 5-10% 5 year event free survival. That means, more than 90% of kids... don't really survive. Secondary AML is a killer.

Secondary AML? Secondary AML?? You have got to be kidding me! How can someone with such promise get a death sentence at 14 years of age? And handle it so well? Lily herself barely reacted; the shock itself was enough to numb her for days.

Lily entered the hospital for her first course of AML therapy in April 2010. This she handled like a champ; because of the high risk of a certain bacterial blood infection following the specific chemotherapy she was given, Lily was resigned to wait in the hospital until her blood counts fell to zero and rose back to acceptable levels. This period of time, in general, is about four to five weeks from admission to discharge. Because we give the next round of chemotherapy almost immediately after the blood counts have risen back up again, AML patients are usually in the hospital for around 6 months while they complete 5 rounds of chemo.

In secondary AML, however- because of the awful prognosis- we simply get the patients into remission and then go directly to bone marrow transplant. BMT: a procedure that, by itself, has a 50% mortality rate. Not a promising outlook. However, getting into remission usually takes- *we hope*- just one or two courses of chemotherapy.

Well, like I said- Lily got through the first round like a champ. Very few problems... our girl breezed right through it. We then checked her marrow.. not yet in remission. Darn. Because we knew she'd be in the hospital for such a long period of time, Lily was allowed to go home for a few days in between chemotherapy when she returned for her second course. It must have been a nice few days at home- but unfortunately she came back to us very ill, with a serious blood infection.

That was the last time she'd leave the hospital for months.