August 4 Update

Our day today was in many ways similar to yesterday. Try to manage on little sleep. Treat Maggie's fever periodically. Get excited about cell growth.

Of course there is more to it than that. Maggie's blood cultures from her initial fever (Saturday night) are still negative. So, there is nothing growing (bacteria), which is good. We'll get final word in the next few days, but it seems that we are still looking at a virus. She was up in the mid 101's today when her tylenol wore off. If it is a virus, we just have to wait until it runs its course. Her fever is responding to Tylenol just fine in the meantime. No big deal there, for now.

Maggie's ANC grew to 250 from 40 yesterday. That is what we've been waiting for. It needs to get to 500, and may do so as soon as tomorrow morning. Her White Blood Count is 4200, up from 2000 yesterday. Again, 6,000 to 14,000 is normal if I recall correctly. It just took Maggie a while to recover fully from the bone marrow damage that the leukemia and chemo inflicted. But the doctors doubled her Neupogen (a drug that instigates WBC growth) in the last few days and that seems to have jump-started her growth. We're still looking at starting chemo later this week, maybe getting a short 48 hour rest at home before coming back.

We got a scare today, though. Among the cells that are recovering are blast cells, at 11%. These are young, immature blood cells that turn in to different types of blood cells as they mature. However, in ALL, the leukemia cells are also blast cells. So, they did a test to see if the blast cells that they found were normal, or Leukemia. There was some concern because the doctor wasn't expecting to see as many of them as they found today (they don't usually want to see anything over 5%). We got a visit from Dr. Broxson and he said that they were waiting for results. When we asked if we should be concerned, he paused and said: "a little bit concerned, but not a lot." Easier said than done. He peeked in shortly thereafter and said that they were, in fact, normal blast cells. There was some confusion from that point forward--though they were normal blast cells, there was some mention of what they were doing in response to the high %. If they are normal, why are they still trying to manage/monitor those cells? We have been trying to find some peace of mind about this, but it all happened too late in the day to be able to talk to the doctor at length. But so far, so good.

If nothing else, it was a shock to us and our expectations. Since the genetic testing we have been comforted in knowing that relapses are supposed to be somewhat infrequent, especially this early. At one point, the doctors told us that if they stopped treatment right now it might take 3-4 months for the leukemia to come back. So, our concern has been focused on infection risk, not relapse risk. Of course if there is a relapse this early in treatment, that is worse than a later relapse. We want to see the chemo treatments working at this early stage to prevent having to discuss alternate treatments that are riskier. Even though we have been assured that things are fine right now, this was a reminder of how fragile we are when frightening or bad news is delivered. Our hearts stop beating. We worry about the worst. And we question whether or not we are being too optimistic through all of this. It is hard to explain that though many are so encouraged by the good signs so far, we still have to sit with the unknown and the reality of Maggie fighting such a horrible disease. The worry is so intense when we have to wait for crucial news or when it seems that something is going differently than expected. We are learning on the fly and anything "unexpected" or "unusual" causes great panic. The more we learn as time passes--the better we will be able to understand what is going on. But so far, we don't have a sense of what is normal, what isn't, which doctor is naturally optimistic, which is more cautious, etc.

Though this entry is getting long--I want to mention two patients on the floor tonight. One was a teenage girl with long brown hair being wheeled down our hallway this afternoon (by the same nurse who first escorted us to our room when we were first diagnosed). The look on her face as well as that of her family members trailing behind her was so hard to witness. The first day of the fear of a new, unthinkable cancer diagnosis (or it could be a non-cancerous blood disorder, I guess--they are treated here too). It breaks your heart to see more families going through this. We know so little about what is going on with her, but it seems so familiar to us, just by glancing at them for a split-second.

Secondly, we were asking questions to one of the oncology nurses about why Maggie has had so many nurses from other floors lately. The answer is twofold: a) there are a lot of patients here now, b) Maggie is stable and doing better than most (or all) of them at this stage of treatment. When there are chemo treatments being given or serious complications, the experienced nurses are assigned. In our case, we are just waiting and treating a minor fever--so the extra nurses who are helping out get assigned to us. Anyways, as a part of this explanation, we were told that several kids are quite sick right now. One of whom has a fever of 106. Wow.

We appreciate your thoughts and continued prayers for Maggie. In addition--we are remembering those who are down the hall from us, families and children at different stages of their lives with cancer. And, those in other states who are in similar situations (some of whom we have read about and been in touch with).

Thanks for your prayers and goodnight.
Andy