Day 2 (cont): We learn a LOT about Leukemia while Madeline's in the OR

Chris and I were able to accompany Mady to the OR. After donning masks, suits, booties, and head coverings we even got to hold her hand as she was given the general anesthetic in the operating room. I was starting to get really concerned that they were going to let us stand there and watch the entire operation... but after she was asleep they ushered us to a pediatric OR waiting room at about 3:00 pm. A very nice nurse talked with us for some time and helped Chris cancel an just-remembered eye-doctor appointment that had been long-scheduled for Mady for that afternoon. We got a pager that would instantly give us any news about Mady's operation and let us know when it was over. She also gave us Lorna Doone cookies, saltines crackers and Cokes--the only food either of us had had all day. I gotta say, that food tasted like a grand feast in light of the earlier news that the Leukemia was the ALL type.

Chris' brother Brian and her sister-in-law Lynn found us in the waiting room--and it was great to see them and have them with us. The pager vibrated... the bone marrow aspiration had gone well, and the oncologist would come talk with us soon. Dr. Alison Friedmann, Mady's wonderful Pediatric Oncologist, found us and took us to a private conference room where we talked for over an hour. We learned A LOT about Madeline's Leukemia. I have over four pages of notes from that meeting, but here are the main points:

• Mady has Precursor B-Cell Acute Lymphoblastic Leukemia or ALL, the most common and treatable form of Leukemia.
  
  
• Being a teenager puts her in a higher-risk group. The lowest risk are 2-10 years olds, infants are higher risk, and the highest risk is group adults.
  
  
• The cure rate for a girl in her age group is 80-85%.
  
  
• "Cure Rate" (which sounds a lot better than Survival Rate) means the Leukemia goes away after the 2 1/2 year treatment, and never comes back.
  
  
• The 15-20% that aren't completely cured have a recurrence of the Leukemia in 4-5 years after the first treatment and must go through (more aggressive) treatment again. The cure rate goes down each time (when and if) Leukemia comes back. These are the cases that can involve bone marrow transplants.
  
  
• The first stage of treatment for Mady is called Induction, and she will receive this as an inpatient in the hospital over the course of the next 2 to 4 weeks. Her biggest risk at this time is infection due to low white blood cells and antibodies. They keep a very close watch for signs of infection while she's in the hospital--and they can quickly administer antibiotics if they discover any.
  
  
• It's absolutely okay, and even important, for friends and family to visit--but not if they are sick in any way. Everybody should always be sure to use the hand disinfectant before they enter her room.
  
  
• After Induction, Mady's blood and bone marrow should be clear of Leukemia and will be producing the needed white blood cells and antibodies that are currently suppressed by the cancer cells. This is when she'll be able to come home from the hospital. (Yay!)
  
  
• They know, however, that she will not be completely Leukemia-free at this point, and she will continue with 2 1/2 years of chemotherapy--mostly as an outpatient.
  
  
• Dr. Friedmann did a spinal tap and got a spinal fluid sample which is currently being analyzed for Leukemia cells. If found, Mady would need radiation to her brain, in addition to the chemotherapy. (This was disturbing, but we had to know... and all we could to was wait.)
  
  
• Mady will get three spinal taps and three bone marrow aspirations in the first month.
  
  
• No one knows what causes Leukemia, but they do know that her sister Julia is not at any higher risk to get it than anyone else in the population. (Good news!)
  
  
• They analyze the genetic markers in the bone marrow Leukemia cells and find a really bad genetic indicator maybe 1% the time. (This sounded really scary, but the risk was low and we didn't find out any more about this)
  
  
• Mady will get four different meds in the first month: 3 chemo and 1 steroid. This seemed manageable... four is a pretty small number. (Turns out that's just the chemotherapy drugs, not all the other meds... more on this later)
  
  
• The goal during treatment is NO PAIN and NO NAUSEA.
  
  
• She will lose her hair in 2-3 weeks. I never knew why this happened, but the doctor explained that chemo targets Leukemia cells because they are rapidly dividing. Other rapidly-dividing cells in the human body include hair follicles, which are also zapped but will come back after chemo ends. Most other body hair cells are do not divide so rapidly, so arm hair and leg hair tend to stay. Eyebrows and eyelashes are on the fence.
  
  
• There is a clinical trial that switches out the standard steroid (Prednesone) for a slightly more aggressive one (Decadron) that may increase the cure rate slightly. We can choose to participate in this trial (we both know we want to immediately) but even if we do there is only a (computer-assigned) 50-50 chance that we would get the new steroid.
  
  Whew! That about covers my notes from that meeting. I was very impressed (and thankful) that Dr. Friedmann (left) was so patient and able to spend that much time with us. I hope most of my notes are correct!