As devastating as it was to get the news back in September, it was far worse when we got the phone call from Dr. Twist on February 26, 2004. Things had been going so well, no sign of trouble at all. We had just gotten a round of chemo on Wednesday the 25th, including a spinal, and we're ready to begin cranial radiation on the following Monday. Instead we were dealt a severe blow when Dr. Twist called and said the cytospin slide from the spinal showed leukemic cells, meaning a relapse in the central nervous system (CNS). As Kerri had done so much research on T-cell ALL, we knew that relapse is very bad.

After a hell weekend emotionally, we headed back to Stanford not for radiation, but for a new super intense 28 day protocol to try to get Spencer back into remission. Fortunately the bone marrow aspirate came back negative meaning the relapse was isolated to the CNS - a good thing. However, with T-cell ALL, an isolated CNS relapse will usually end up in the bone marrow if something besides chemotherapy is not implemented. This means a transplant of some kind.

Here is a quick reason why T-cell is so tough, and why a high white count at diagnosis can be a bad thing (see diagnosis page). Of course this is way oversimplified, but you'll get the picture. Apparently, the chances of a leukemia cell being resistant to one chemo drug are about one in a million. So the chances of a leukemia cell being resistant to two chemo drugs is about 1 in 10 to the 12th power. As leukemia cells replicate themselves out of control, they continue to mutate, each having a slightly higher chance of mutating into something resistant to chemo. To combat this, protocols utilize several different chemo drugs. However, if you have a presenting white count of 250,000, which is the number of white cells in a tiny tiny tiny percentage of your total volume of blood, a couple CCs or less, then the total number of leukemia cells in your body is astronomical, far more than if your presenting white count were, say 27,000. Therefore, the chances of there being a resistant cell is really quite good. When this cell reproduces itself to the point of relapse, with it's, and all it's offspring's, resistance to chemo, it can be very difficult to get back into remission.

In fact, it was quite difficult to get Spencer back into remission, even though we caught it before he showed any physical symptoms. He got the full knock-down punch of systemic (IV) chemo even though his bone marrow was clear, but he really got wailed on with spinal tap after spinal tap to clear his CNS. We were looking for a clear cytospin slide by the 4th or 5th intrathecal treatment, but it took significantly longer than that. I believe, not counting his LP on the Wednesday before relapse, it took 8 triple ITs to clear the fluid, at which point he gets two more. So by the time we got to Duke he had had 11 spinals in 5 1/2 weeks (two per week). In addition to that, by the second week of his individualized protocol he got such bad mouth sores (mucocitus) that he had to be hospitalized. He also had some high fevers while in the hospital. We were inpatient at Stanford for 26 nights. Once we got out we simply drove to Paso Robles and flew straight to North Carolina. We didn't even go home.

Spencer was in incredible pain, on continuous morphine, and didn't talk for 4 weeks. He developed severe weakness in his legs and knees, and some drop foot from 5 weekly vincristine pushes (chemo drug). He essentially couldn't walk the day we got out of the hospital. He is recovering very slowly and may have some permanent nerve damage in his feet or legs. However, his is young and it is our hope that with physical therapy he can get better.

Bottom line, considering it is T-cell ALL, and that it took longer than we had hoped to clear his CNS, the leukemia is obviously resistant to chemotherapy. And with the aggressive nature of T-cell, it is imperative to proceed to transplant without delay, before it can get a foothold again.

The theory behind transplant is, since your own body does not recognize the leukemia cells as being foreign or bad, and therefore doesn't attack them, a different immune system is necessary. This is what a transplant is. All your bone marrow is killed off, which is where all the young blood cells are produced. Then you are infused with someone else's bone marrow, or cord blood in Spencer's case. This circulates around in the body until it "engrafts" or sticks to the inside of the bones and begins producing marrow again. This time the cells that are produced are not your own, but of the donor. You can even change blood type during this process. Once the marrow is functioning properly, the white cells will hopefully recognize any leukemic cells as foreign and destroy them. This is called graft vs. leukemia.

Of course the danger is that the new marrow may think that many other parts of your body are foreign now as well, when in actuality they are not. This is called graft vs. host disease (GVHD), and if it becomes chronic and severe, can be life-threatening. Surprisingly, some GVHD is good, as it indicates your new immune system is working, and may be working on the leukemia as well. Many things are done during and post transplant to attempt to regulate the amount of GVHD.