Andrew was diagnosed with Erythroid (M6) Acute Myeloid Leukemia on November 4th, 2010 when he was almost 5 months old. Andrew is currently in remission from his cancer, after finishing his 5 rounds of chemotherapy. He is a healthy, happy toddler.

Monday, April 18, 2011

Runny noses and other thoughts

Stew has been sick for a week. He's been a bit of a zombie most of the time, and I've been watching Andrew intently to see if he'll get sick. So far, he only has a very leaky runny nose. It's amazing how motherhood desensitizes you to so many things, like wiping goopy snot off of someone else's face. As of last Thursday, his ANC is still zero, but his platelets are right under the top of the normal range of 150-400,000 plts/uL. All of the bruises on his head are gone, so I guess his body knows what he needs better than I do, and having a low ANC does keep us home for now. I must admit, though, the hospital is looking more and more appealing because this time, it'll be the beginning of the end. The earlier we go in, the more of a summer we'll get. I always felt bad for the Steeles who got diagnosed at the beginning of the summer last year because by the time they got out, it was the middle of winter!

It's so nice to be able to talk about little things like what season it is when you get out of the hospital. I know that I should be thinking more about his weekly and monthly blood draws for the next little bit, and his potential relapse, but amazingly, I'm thinking about how much time away from Primary's we can get away with so we can go hiking down in Zion's. Or if I can go visit my sister in Missouri or my brother in California. Or heck, even if I can go visit my parents in Ukraine (or Indiana...added by Stew).

Things just seem to be getting easier every day. The lurch in my stomach that used to be there all the time is almost imperceptible. My fears of relapse haven't surfaced yet because I'm only thinking of the immediate future--that he's in remission and of course the cancer isn't coming back! It's getting hammered with myeloablative therapy every month! I don't know if I've mentioned it in this blog yet, but the overall relapse rate for AML is 50%, but since Andrew achieved complete remission (less than .1% or something like that) after the first round, the relapse rate drops down to 30%. We'll take it! Apparently, they've also done studies that compare 4 rounds of chemotherapy with the 5 rounds that we're doing, and they've found that there is either no difference in relapse rates, or there's a 5% decrease after completing a fifth round. Mmm, 5% could mean a lot. We'll do that one.

Andrew is really doing so well. He has been clingy lately, not just keeping me in his sight at all times, but not letting me move more than 2 inches away before he starts to bawl. It has gradually gotten better to the point that he'll finally let me put him down for a nap rather than having me hold him while he sleeps. He even let me go skiing for a while on Friday, but I did notice puffy eyes when I got back (our poor babysitter, Sr. Knott!). Last Sunday I was talking to the attending, and he said that Andrew is doing as well as one possibly could with an AML diagnosis. I really don't know why we've been given this enormous blessing, but I can only attribute it to a merciful God, who knows my weaknesses and exactly how much I can handle, which is not a lot. I'm really not that great at doing this whole leukemia thing. Andrew's really great at it, though.

I wonder if people know how much I treasure some of the little things they say. Things I'm not even sure they remember saying to me. Words of encouragement, things to ponder about. I remember my Mom telling me about a lady in Ukraine with cerebral palsy (which seems to be very common over there) who said she was flattered that God would think enough of her to give her that trial in life. What an incredible perspective. I've also thought a lot about what Elder Richards told us last Sunday at church (he spoke in the Saturday Morning Session of General Conference a few weeks ago: He said that it is a sacred privilege to have a sick child at the hospital because now more than ever we can enjoy that closeness to Deity that only comes when this sort of crisis/trial is upon us. I guess for other contexts, calling our experiences a "privilege" would seem almost offensive, but it has been so true for us.

The last person whose words I've thought so much about recently has been another mother in the hospital. She wondered aloud whether other parents whose children are healthy know what they have. She quickly added with her characteristic gratitude that we do. That when our children are threatened with death and illness that we begin to understand just what we have, and that when they're taken from us sometimes we really do realize what we had. And still have. What an amazing (and at times, vital) assurance we have as members of the church about the eternal nature of families.

So many things in the gospel have become more significant for me. Even simple words or phrases that I've heard my whole life, like receiving a "remission" from our sins. That word is associated with so much profound relief for me. A remission is such a release from anxiety and pain.

Anyway, I'd better post before I ramble too much.


  1. Wow, Lizzie. You say it all so well. I have always felt awkward in saying that I never hated cancer because so many others really do hate it. I have never been able to say "cancer sucks" because I really have felt like Erin's AML was such a beautiful trial for us. The cancer of course wasn't beautiful, but the lessons learned and the amazing miracles witnessed were beyond compare. I will forever be thankful for our trials. They truly have purifed us.

    And . . .the last comment you made about remission is AMAZING. I have never even thought to compare a cancer remission to a remission of our sins. It rings so true. I may have to steal that idea of yours. Thank you so much for sharing your profound thoughts.

  2. Also . . . have you gotten to know any of the new AML diagnosed families in ICS? I have been wondering if they have blogs. You are welcome to direct anyone to mine. I hope that it can help anyone who has to go through a similar trial.

  3. thanks for your thoughts it seems to be a little lonely around here. those who i have met have gone home.

  4. thanks for sharing your thoughts lizzie - i agree that it is such an INCREDIBLE blessing to be assured that families are eternal. the hope and comfort that come from knowing about the sealing power help me to know that i can get through anything because i will have my family in the end.

    and jill - i loved your thoughts. while you hate to see these innocent little ones suffering, it really is a beautiful trial in so many ways. i wish elena didn't need to suffer for me to learn the lessons i have, but i wouldn't trade the growth that we have experienced in the last year+ for anything.

    and yes lizzie, 5% is huge! i'd take it, too. :) good luck!

  5. Lizzie, love you, and your family. I feel your faith and testimony in your words. Don't be afraid to ramble. Your ramblings are worth their weight in gold. Praying for you all.

  6. I sure enjoyed your post. I'm glad you get a little time away from the hospital and I'm thrilled about the remission. He's a darling boy--what an amazing smile!

  7. Thank you so much for your "ramblings." Do it more! There is much insight you have gained through this refining fire.

  8. You really inspire me. Thank you so much for sharing. You have stayed in my thoughts and prayers since Matt told me about this whole trial. Much love and well wishes for little Andrew!