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.

Thursday, June 23, 2011

Update

It's been a while since we've written, so it's time for an update. We've been super busy getting back into normal life, including church and the grocery store! I feel like next to being in nursery at church (which I think I might let him do after next winter), being in a grocery cart has got to be one of the dirtiest places. Andrew's doing really well overall. He's still walking with furniture (which he's been doing for 6 months), and I'd say he's back to his normal cheery self. Sleeping is still an issue sometimes, but I'm sure that'll improve with time and consistency that we couldn't get in the hospital. He eats like a champ now! He went from a yogurt-only diet to eating everything but veggies, which is a HUGE improvement! I could tell that he was feeling better a week or so ago when he started jabbering constantly, which he hadn't done since before the last round of chemo. For those who are interested, I'm still nursing him because technically he doesn't get adaptive immunity (B and T cell immunities) for at least 6 more months. This means that we'll start vaccinations then as well. Also, the chemo basically fried his gut, and breastmilk helps a lot with preventing Chrohn's and necrotizing enterocolitis in certain groups of newborns, so I personally believe it will help his gut heal substantially. I know it's not socially acceptable, but whatever.

His white count is a little below normal, and his ANC has taken a drop, but that is still within normal range. We've had him play with other kids, and it's been amazing! I love seeing him interact with kids his age. His hematocrit is also (barely) within normal range. The aspirate they did a little more than a week ago was negative. This is fantastic news!

Apart from the scars on his body, Andrew is indistinguishable from a normal 1-year old. He still has some physical, social, and psychological issues, but I'm sure those will fade with time. Some kids don't get much hair until they're 2, so I figure he fits right in. A lot of people have asked me what the long-term effects of treatment are. I didn't have the heart to look any up until near the end of our treatment, but I didn't learn anything new. I asked our oncologist what they were, and he said other than relapse or a secondary cancer (the VP-16 or Etoposide that he had can cause secondary cancers), the only other major side effect was heart damage from the anthracyclines he was on (daunorubicin and mitoxantrone). One nurse I had in the PICU said that her mom died from congestive heart failure from the doxorubicin she was given. That is always a worry. There is a certain percentage of kids (it's significant, but I can't remember the number) who acquire the defect during treatment and others for whom it takes longer. Like the potential for another battle with cancer, this one will just take time for the risk to pass.

I'm trying not to dread every clinic appointment, but I do. I think about Andrew relapsing all the time. I know the worry will fade with time, but I also know that if he relapses, things will be much worse. I've gone from thinking 'I can't believe we're home' to thinking 'I can't believe we went through all that' at least 100+ times a day. I try to have faith knowing that no matter what happens, everything will be fine. Heavenly Father has always taken care of us.

Every time I finished a semester in college, I got pretty sick within 2 weeks of the semester being over. I got sick with a cold last Thursday that put me out for the count for a few days (Andrew got it, but he seemed to be okay overall). It was bad enough that I was throwing up most of the night one night, and I couldn't help but think about all the cancer kids at Primary's who throw up all the time. Thank goodness for modern anti-emetics! I know, though, that those often just don't cut it and those kids feel like I did all the time. I was feeling pretty grateful that night.

4 comments:

  1. Lizzie,

    Well, I know you don't know me or anything, but I am a friend of Stew's from Indiana, and I just wanted to say that I think there is absolutely NOTHING wrong or weird or unacceptable about nursing Andrew or any other child after a year. I know it's not as common and I never thought I would be "that mom", but I only stopped nursing my daughter at a year because she was ready to move on and my supply dropped. I'm not a nurse-your-kid-till-he's-5 either kind of person, but as long as it is beneficial for your kid and you are ok with it, I think it is absolutely the right thing to do, even if other people think it's weird. What do they know, anyway? Anyway, I know my opinion is sort of irrelevant, but I just wanted to say good for you for doing what you feel is best--you shouldn't ever feel bad or social unacceptable about that!

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  2. I'm glad things are going well for you and Andrew at home. I think you are a great mother to do what you think is best for Andrew, especially when it is hard. I think about you often and I hope and pray that you never see any after effects or any more cancer. You are amazing!

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  3. i love the testimony you often bear in your posts about the blessings and care from the Lord that you've seen along the way. it inspires me.

    i'm so happy you guys are settling in a little more at home! hooray, hooray! and good for you for doing what you think is best for andrew - who cares what "society" thinks! you are an awesome mom!

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  4. What a wonderful update. I'm glad to hear that Andrew is doing so well, and I love the picture you have in your header!

    Like Alisha, I want to you encourage you not to feel weird or unusual for nursing Andrew past a year. You're doing *such* a good thing for him. My Elizabeth still nurses (17 months today!) and as I've been nursing her into toddler hood I've been learning and hearing more and more about how it is actually more of a norm than I suspected. The WHO recommends nursing until at least 2, and most kids naturally wean after age 2.5. I really like this fact sheet: http://www.kellymom.com/bf/bfextended/ebf-benefits.html

    I've also been learning more about gut health recently and am intrigued by the GAPS diet. I've found good basic info here: http://www.keeperofthehome.org/2010/02/the-gaps-diet-what-it-is-and-why-you-might-consider-doing-it.html and here: http://www.healthhomehappy.com/2009/10/starting-gaps.html


    Anyway, not to inundate you with info-- I hope you don't mind the links! Obviously, you are trusting your instincts and taking care of Andrew in the way that you see best. Good job, mama! No one can fault you there!

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