Category Archives: Getting to Know AML

Getting to know AML


Well, it is an awful dreary, flat, smudgy, blue gray day here in Seattle.  Allistaire is doing much better today.  Yesterday evening after her nap she just wanted to sit and snuggle.  She thought several times she wanted to get down from my lap and stand on the floor but it was too much for her each time and she would immediately begin to cry.  She was given a few doses of pain meds before going to bed about 9pm.  During the night I heard her whimpering and crying in her sleep a number of times so the nurse was able to call in for more pain meds.  About 8:30 this morning she was up standing in her crib talking.  She has done really well today and spent over 2 hours riding around on the bikes on the ward.  She did not seem to be holding back at all.  Again, though, these were anxious laps around the unit as I waited for the doctors to make their rounds.  We were told yesterday that the pathologist had to complete their tests in order to sign on the dotted line that Allistaire has AML and determine the subtype of AML.  Allistaire cannot start her treatment/chemotherapy until the pathologists signs off on things.  Even more significant for Sten and I at this point is trying to get all the info on exactly what type of AML and all the details that can have a significant impact on prognosis.  Apparently different sorts of chromosomal changes in the cancer cell can make it easier or harder to treat and can also determine upfront whether or not she will have a transplant.  It feels like this whole process is taking so long.  We were supposed to get word back from the pathologist last night or this morning at the latest but it’s 3pm and we still don’t know.

So, I just spoke with the doctor who had connected back with the pathologist.  The pathologist still had not received test results that were expected Monday afternoon and in addition, the pathologist is having a challenging time as well.  In order for Allistaire to be diagnosed with AML she must have at least 20% leukemia cells in her blood/marrow.  They use a test referred to as Flow which sends all the cells in the sample, one by one, down some sort of tube where they bind with antibodies that have florescent tags on them.  Each type of cell has its own unique proteins on its exterior which determine what specific type of antibodies can attach to it.  Lasers then read what frequency of light is given off by the antibody now attached to the cell’s protein and are able to label each type of cell as it goes by because they know what frequency of light refers to what type of cell.  In doing so, they are able to use this test to determine what percentage of leukemia cells she has.  Apparently fibrosis in her bones and therefore, in the sample, has made conducting this test more challenging.  I think I’ll hold off for now in going into all these details as it is all very confusing for me and I’m sure would be more so for most folks.  For those of you interested, I encourage you to read through a few sites that help explain AML.  They will do a much better job at explaining the disease than I ever could.  There are also some helpful pictures and diagrams that explain a lot.  Once we know more details I will pass them onto you.

Children’s Oncology Group

National Cancer Institute

We have one major praise – they did not find any leukemia cells in her spinal fluid!  This is one good thing we can rejoice in!

Well, it’s now after 10pm and I did get more information from the doctors but because they are still waiting on a few test results I’m still going to hold off in giving you all the details.  The important things to know is that they have verified that Allistaire has AML by determining that 21% of her blood is leukemic cells.  She is scheduled to go in for her first round of chemotherapy tomorrow morning.  This first one is an intrathecal chemotherapy which will go directly into her spinal column.  This is scheduled for 10:40 am and she will be sedated as she was for her initial bone marrow draw.  They do this regardless of the results of the lumbar puncture which looked for the presence of leukemia cells in her spinal fluid.  More than likely she will also begin her first round of intravenous chemotherapy tomorrow as well.  I have to say, I never thought I’d be anxious to start chemotherapy but I think at this point we just want to begin this process of her treatment.

Thank you again for all of your love and prayers.  They are sustaining us – and sometimes it is a moment by moment battle to fix my eyes on the Lord and not to get mired down in the gritty details.  You can of course expect that tomorrow I’ll be sending an update about how the day went though it may be brief.  Sten plans to spend the night at the hospital tomorrow night because Solveig and I get to have a big night together – we’re going to see the Pacific Northwest Ballet’s Nutcracker.  I’m really excited, and I haven’t seen my girl in way too long.

Good night stars.  Good night moon.  Good night world.

Road Warrior