E’s Leukemia: FAQ

What the heck is going on with E?

On July 21st, 2011, E was diagnosed with Average-Risk, Pre-B cell Acute Lymphoblastic Leukemia (ALL). Needless to say, that was an awful day. After E’s first surgery on July 23rd, one of our doctor’s approached us, smiled serenely, and said “Now we can start fighting back.” We are taking that to heart.

What the heck is leukemia?

Here is how we, as parents, understand the disease: ALL is a cancer of the bone marrow and blood. Your bone marrow is responsible for making all of your blood cells, but in ALL, your marrow goes nuts and starts making billions of idiotic, immature, white blood cells called lymphoblasts. These lymphoblasts are supposed to grow up into mature, infection-fighting, white blood cells. Like I said though, they are idiots and never grow up and do their job. They are permanently stuck in their tween years, insisting on being driven around everywhere by their parents while they sit in the car, sulking and texting their friends all day long. When you ask, “How was school today lymphoblast?” they reply with a shrug and say “Boring. Gawd Mom, why are you so annoying!?” Lymphoblasts never say ‘please’ and ‘thank you.’

So these lazy leukemic cells sit around in E’s marrow and blood stream, crowding out all the other good cells. By the time she was diagnosed, the lymphoblasts had turned E’s bone marrow into a thick, useless soup. Our doctor said that, on diagnosis, when you try and pull out some bone marrow for examination (known as a bone marrow biopsy), it’s hard to draw the marrow out because it is so thick with stupid teenager cells. They can’t even put their cell phones down long enough to be biopsied!

Since bone marrow makes red blood cells (to carry oxygen), platelets (for clotting), and white blood cells (to fight infection), kids with ALL have trouble with all these things. Their bone marrow can be up to 95% stupid cells, which only leaves 5% capacity for making normal, useful cells. We were lucky because E’s only symptoms, at diagnosis, were bruising and petechiae (little red spots that indicate bleeding under the skin), because her platelets were so low. A lot of kids can be much sicker at diagnosis with fevers, bleeding, and pain.

Left untreated, ALL is fatal within weeks or some months. Our doctors said that E’s leukemia probably had started approximately three weeks prior to her diagnosis. I couldn’t help going back and checking, “What were we doing three weeks prior?” Turns out: it was actually a great day full of bike-rides and time spent with friends. I’ve had a few cancer survivors give me advice that starts with, “Don’t let cancer ruin . . .” or “Don’t let cancer take away . . .” I like that leukemia didn’t ruin our ride with the new kiddy bike seat.

What the heck causes leukemia?

From what we understand, researchers are not sure. Most likely, it is some combination of genetic and environmental factors. There are a few risk factors that can predispose kids to cancer, but E didn’t have any of those. I’m sure 50 years from now, we will know for sure and have the chance to beat ourselves up for whatever caused this nonsense.

When the heck is she going to get better?

Obviously, the most shocking part of all of this is being told your child has cancer. Coming in at a close second: The moment they tell you your child will need chemotherapy for 2.5-3.5 years! Luckily, girls generally only require 2.5 years of chemo – though that can be stretched over a longer period because the treatment schedule is not always precise. If everything goes as planned, she will stop chemo on or around her fourth birthday.

What the heck? Seriously, what the heck . . .

I know. It is really awful. Cancer is the worst. A friend sent us a card that said, “Cancer is such a dickhead.” And seriously. It is a total dickhead. When I’m feeling down about this whole cancer thing though, I try and think of the following list:

Great Stuff:

  • J and I love each other.
  • J and I love E.
  • E is awesome and funny and sassy.
  • E has the most researched, most treatable kind of childhood cancer.
  • E is considered average-risk and has an excellent prognosis.
  • We cannot count on both hands the amount of family and friends who love and support us.
  • E has four grandparents, all living within a 10 mile radius, who are all obsessed with her.
  • We have health insurance.
  • My job is flexible and my employer is understanding.
  • J’s job is flexible and his employer is understanding.
  • Stella is the ultimate cancer companion and can make E smile, even from the depths of steroid hell.

Awful Stuff

  • E has cancer.
  • Chemo sucks.

It’s easy to get lost in the Awful Stuff list, but the Great Stuff list always sneaks up, taps me on the shoulder and says, “Remember me?” Sometimes it takes work, but we aim to think of our Great Stuff list every day.

How was she diagnosed?

This always seems to be everyone’s first question, so I made a blog post about it: The bruises. The diagnosis.

What has treatment been like? 

I can’t say what treatment is like for every kid – or even for any kid besides E. But I have been keeping track of this whole thing pretty meticulously (Perhaps too meticulously? Anyway, the project has kept me sane) so, if you’d like to see what one family’s life looks like going through pediatric cancer, you can check out our whole story from Start to Today over at: How Our Story Goes.