Leukemia for Dummies (like me)

Hi all – we say a lot of medical stuff in our posts, and while reading Thomas’ kids book on Cancer this morning I thought they did a better job of explaining it than I’ve seen anywhere on the internet. Anybody that has ever done a Google search on Leukemia knows its pretty overwhelming, so here’s my brief attempt to simplify it so even a nitwit like me can understand:

You’ve got 3 types of blood cells:

Red – These suckers carry your oxygen

Platelets – These babies heal cuts and bruises

White – These bad boys are the ones that prevent and heal infections, essentially the army of your body

Your bone marrow produces all three of these and they all live in harmony and happily-ever-after when you’re healthy. Your body also creates baby White Blood Cells (WBCs) that never fully mature (like me) and can’t fight infections. A healthy body kills these off regularly.

Leukemia (ALL) is when your body can’t kill off these baby/immature WBCs and they multiply to the point where they crowd out all the other cells and not only open up your body to infection, but the ability to heal it as well. That’s how doctors confirmed Sally’s Leukemia  2 weeks ago, she had an absurdly high amount of WBCs, and 86% of ’em were the immature (or Leukemic) ones. This is why they had to rush into chemo treatment, as her body was making a ton of these immature cells at an accelerated rate causing her to be highly open to infection and the ability to fight it.

With chemo, they give you a ton of different drugs (IVs, pills, fluids) that go through and totally wipe out and kill all of these baby/Leukemic cells. Its too complicated to explain here (AKA, I don’t understand them). Unfortunately, they also kill off all the good cells too. Talk about throwing out the baby with the bathwater. This is when you become Neutropenic, when you have little to no WBCs and you’re at high risk for infection.  This also causes side effects, the most well known being the loss of hair. Hair loss happens gradually over several weeks in most cases, not all at once like many think.

They deliver chemo in Cycles, where they give you several doses over a period of time and then let your body recover a bit before giving you another cycle. Cycle time frames vary, treatment is different for every person. Typically, the first few weeks/months are the most aggressive trying to get you to remission (cancer gone) and then after that making sure it doesn’t come back. The whole process is around 2 years, the 2nd year usually being the “maintenance year” where your hair grows back and the meds get progressively less. In typical cases this is done mostly as Out-Patient, where you come to the hospital clinic a couple times a week for a few hours and get your drugs before going home. Treatment can bring complications like fevers and such. This is when you get checked in as an In-Patient and stay at the hospital til you get healthy and your blood levels look good.

When the above process doesn’t work, that’s when they typically go in and just replace the marrow, or essentially remove the problem at the source and put in good marrow. This is known as a bone marrow or stem cell transplant.

Again, every kid is different so the above varies greatly. Sally may go down this path or an entirely different one. She also has an MLL Translocation, which in simple terms means her chromosomes are getting all tangled up.  This makes treatment more challenging and is common in infants with ALL, infant Leukemia itself being rare. With Sally being an infant and having the MLL, almost nothing you read on the internet in terms of treatment or success rates apply to her. She’s in a rare category.

So, that’s it in a nutshell, hopefully it all makes sense. This will all vary as every kid is different, so although we have an idea of what the journey could look like, we truly don’t know. That’s the scary part. One day at a time.

Thank you for joining us on this journey, its easier to do it with your love and support.


7 Responses

  1. Colleen Jasinski
    Colleen Jasinski July 28, 2013 at 3:02 pm | | Reply

    Thinking of you and your beautiful little girl and sending lots of prayers.

  2. Daisy
    Daisy July 28, 2013 at 3:44 pm | | Reply

    Thanks for the thorough explanation Matt. Prayers continue to be with all of you most especially sweet Sally Sunshine.

  3. Dominica Lesiuk Gazzillo
    Dominica Lesiuk Gazzillo July 28, 2013 at 4:20 pm | | Reply

    My baby girl and I say daily prays for your little beautiful sunshine. We are praying as hard as we can. I hope this helps. I am friends with you cousin Sabina. Thanks for sharing this with us all. Just know we are all here for you and your family. My husband and I will be at it fundraiser in sept.

  4. Kristen
    Kristen July 28, 2013 at 5:18 pm | | Reply

    Wow, what a great explanation! You’ve got a better handle on it than you think. Sending prayers and happy thoughts your way! Hang in there buddy!

  5. Denise
    Denise July 28, 2013 at 8:05 pm | | Reply

    Thank you, Matt.
    That really did help my understanding of what Sally is dealing with. Our prayers continue for all of you!
    xoxo The Nofi Family

  6. Deanna
    Deanna July 28, 2013 at 9:04 pm | | Reply

    You did an amazing job explaining that! Just like how you guys are amazing parents for your kids! I think about you all everyday and I am continually praying for sweet Sally sunshine!

  7. Marianne
    Marianne March 6, 2014 at 7:07 pm | | Reply

    Thank you for the explanation, it could be very overwhelming to the point i am wasn’t even sure what is going on and what is going to happen next.
    Awesome explanation! I wish the best for Sally <33

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