Sunday, March 8, 2009

My niece has cancer

I've been trying to think of a way to say that, and I decided that just getting it out there was easiest.

My niece, Lily, is four and a half months old. About a week ago her mother (my sister, Lou) took her to the hospital because her abdomen was distended and she was acting constipated and had been running a fever off and on for about seven days. They quickly ruled out constipation or intestinal blockage. Her platelet count was low, her liver and spleen were enlarged, and although her white blood cell count was normal within a few days her blood had been flooded with immature white cells. They did two bone marrow biopsies and didn't get enough material to make a definitive call. One bone marrow sample was sent to an outside lab to do a stain. A liver biopsy was scheduled for Friday but by the time they were ready to do it it was unnecessary. The stain had come back; it was definitely leukemia. She has acute myeloid leukemia, to be specific. She started chemo yesterday.

If you'd like to keep up with Lily's treatment, visit her CaringBridge page here.


  1. You have no idea who I am, but I found your blog by clicking links in a friends blog, which led me to another blog, which I think led me to yours.

    My friends son was diagnosed with AML in January, at the age of 5. From what my friend has told me (and my own research), AML is rare in children, so I was surprised to see that your niece has it. I hope that she responds to her treatment as well as my friends son has been.

  2. Thank you for the well wishes, Samantha. Her red blood count is up and she's responding very well. We were all very surprised that she was diagnosed with AML as well; my understanding is that it's usually found amongst older men. One of the oncologists said he'd never seen a baby so young with leukemia. I'm glad that your friend's son is responding well to the treatments; I hope he has a full and speedy recovery.

  3. That is good news, indeed!

    David (friends son - friend is named Erica) recently finished his second round of chemo. They are waiting for his ANC to be consistently on the rise before he gets to go home for a few days, before continuing with his treatment plan.

    A good AML story for you though... two weeks ago, a nurse stopped in the room to talk to Erica. She had never met the nurse, and the nurse wasn't even assigned to David, but the nurse said that she had to talk to Erica.

    She wanted to tell Erica that seven years ago, she was the one in that hospital bed. The nurse had been diagnosed with AML in her mid/late teens. After graduating high school, she went to nursing school, and now works at Riley Children's Hospital in Indianapolis, IN. So far, the nurse has apparently had no set backs, and has been in consistent remission.

  4. Wow, that's an amazing story about the nurse. She definitely found the silver lining in her illness and now she's helping others. How many more rounds does David have to go? I know they expect Lily's treatment to last about a year.

    Lily finished her first round of chemo last Tuesday. Lou said that the doctors were extremely happy with her progress and her increase in liver function. They're letting her go home for up to a week between chemo rounds, although they have to wait for her numbers to stay up, too, so it'll probably be a few more weeks yet.

  5. I think that David has three more rounds to go. So far, everything is looking good, and early results indicate that the cancer is gone, but they are going with the long term plan to make sure that it stays that way.

    I think he went home for 10 days between rounds one and two. One of his levels hadn't reached a point that needed to for him to be readmitted, so he got to spend another weekend at home before going back for the second round. Now they are waiting for the all clear to go home before starting round three.

    Erica is hopeful that things continue as they have been with his treatment. David gets unhooked from his IV every afternoon for a few hours so that he can ride a bicycle (on loan from physical therapy) around the hospital to get rid of some of his energy. They had originally taken the bike that he had been riding during his first stay back to the the physical therapy area, as the other kid that was using it had been released. The PT person came up, talked to David and his crew, and agreed to loan one to him, since they want him active on the days that he has energy. He loves riding laps around the hospital (though I don't think he likes the mask he has to wear too much). It almost never fails though... He sees a snack machine, and they have to go back to the room because he wants something to eat.

  6. That's great that he has that much energy. It sounds like he has a really good prognosis. It sounds like a good plan to keep on with the treatment just in case. With cancer you can never be too careful.