Friday, May 22, 2015

Epilogue

So, I've definitely not been the post-iest for a couple of years.  We continued to go to Duke every three months for scans.  Eve has had enough radiation to fuel a back-up generator at Shearon Harris.  I laugh when people are scared of getting cancer from going through a machine at the airport; you have a better chance of getting cancer from being treated for cancer.  We've been billed for CTs, MRIs, echos, x-rays, ultrasounds, some nuclear medicine scan that is so far removed from my brain that I couldn't pick it out of a line-up...

The past two years have been easy.  Just ultrasounds and x-rays, blood work and pee cups.  I am still the most proud mom on the block that my child can piddle in a cup by herself without getting it everywhere.  She may not spell that well, but DAMN, that kid can piss.  Too bad this doesn't fall under Common Core.

For those of you who are late to the game, here's the Reader's Digest version:
  • Eve's pediatrician felt a lump in her abdomen during her 2-year check-up.  (She was asymptomatic.  Please, don't skip these appointments for your children.)
  • We went to Duke where Eve was diagnosed with bilateral Wilms tumor (a pediatric kidney cancer).
  • Eve underwent months of chemo before having surgery, where she lost her right kidney and part of her left.
  • Eve completed radiation and more chemo after she recovered from surgery.
  • We have been going to Duke every three months for the past five years since she completed treatment.
Eve's case was always a little complicated.  Of the 400-500 kids who get Wilms each year in this country, about 5% of them have it bilaterally, or in both kidneys.  Only about 5-10% of Wilms kids have more than one tumor in each kidney.  (Eve had thirteen between the two.)  10% of Wilms patients have anaplasia, or unfavorable histology; one of Eve's tumors was anaplastic, hence the need for radiation.

And also, the child liked to flip her port, so there were surgeries to fix that.  Imagine something implanted under your skin that you could manipulate with your hands until it looked like it was going to pop out of your chest.  Yes, it was uncommon and yes, it was gross.  But she'll always be our beautiful, little complication.

There were times that I didn't show you the most pitiful of pictures because I didn't want to make you feel worse.  I regret not showing you, because I think you really need to know what cancer looks like.  I think you need to feel uncomfortable so you'll do something to help.  You got watered-down glimpses, like this:



You got cute pics, like this:
How cute!  It's a 2-year-old holding all the vials they'll need to fill up with her blood
to see if her immune system is strong enough to withstand chemo today!

You got to see that Eve made things look easy at times.  


It's not easy for most kids.  It can be quite traumatic.  We lucked out with Eve.

You read stories of Eve getting knocked out with a variety of drugs.  "Oh, did that kill Michael Jackson?  Well, I'm sure our toddler will be fine."  We made videos of Eve coming down from ketamine trips.  


You haven't lived until you've seen your baby turn on, tune in, drop out.

You've seen scars and targets and tops of diapers that are filled with pee so toxic that we had to wear gloves to change her.


There were pictures of machine guns trying to kill mosquitos.



There were pictures upon pictures of Eve growing up in three-month increments before your eyes.


There were fingers always being crossed that she would drink that giant cup of contrast.  (Contrast tastes like apple juice mixed with gasoline, by the way.  Craft beer enthusiasts would gulp down Miller Lite before they drank contrast.)


But she did grow up, and that's thanks to people who have so generously funded childhood cancer research.  Eve's outcome may have been very different if she had been diagnosed a few years before.

Eve's story, in her words last year:


Today, we had Eve's very last scans at Duke.  Note the tutu.  That tutu has gotten around.





This man, Dr. Dan Wechsler, has suffered through 5.5 years of inappropriate jokes from me.
He is also one of the people who saved my daughter's life.
I deeply want to thank everyone, without sarcasm or references to TV shows that have long-since passed, for continually supporting organizations that fund childhood cancer research when I beg you to.  Which is all the time.  

When will I stop asking?  Well, until we can cure the two classrooms of kids who were diagnosed with cancer yesterday, the two classrooms who were diagnosed today, and the two classrooms who will be diagnosed tomorrow, never.  I pledge to be that person on your newsfeed that you want to block but feel guilty about (rightly so) because of how many times I am asking you to fund life-saving research.  

When your child is diagnosed with cancer, no matter what the odds are, for a parent it is always 50/50.  Either they make it, or they don't.  Sure, childhood cancer overall has about an 80% cure rate.  But that still means 2 out of every 10 children don't make it.  And that is the most horrible of all the horrible things in the world.

My kid made it.


We would like to celebrate this milestone by asking you to donate in honor of the kids who are still undergoing treatment and in memory of those who were failed.  

I am doing my sixth Ultimate Hike on August 1.  But it's not just me.  I'm bringing Natalie and Daniel, the youngest girl and boy to participate in hike history.  We would love it if you supported our team, Wee the Peeple.  (You know this is the best pee-themed team name, ever.)  We would love it even more if you signed up to come pee in the woods with us.  But, if that's not your thang, we'll do all the peeing if you just do the donating.

Now, everyone go eat a Victory Taco.  My girl is cured.

5 comments:

  1. This is my first time reading your blog. A friend posted the link today and I noticed the picture and was sure it was Duke. We were there yesterday with our daughter getting chemo and I saw Eve, but had no clue really who she was! Congratulations!

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    1. Karryn, what a small world! I hope your daughter is doing as well as she can with her treatment and that one day we can eat a victory taco in her honor!

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  2. Yay!! I've been following since Day 1 on Baby center. Amazing news!!

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  3. Yay!! I've been following since Day 1 on Baby center. Amazing news!!

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  4. My son was diagnosed with wilms tumor and we lived with that diagnosis for more than 3 years, spending all we had and losing ourselves in the process, its what I wouldn't want to see any person go through, Luckily we had an encounter with Dr Jose, a renowned Italian doctor that helped us overcome his cancer in less than two and a half months, just with the use of herbal medicine and spiritual help, i can now boldly say that he is cancer free and a proud living testimony,Dr Jose is known to be able to tackle any type of cancer found in the human body, God forbids any one should suffer here on earth, thats why I believe he created all these herbs, if you also want to clear your doubts and fight cancer to the barest minimum, take the bull by the horn and avoid death, you can contact my Doctor, by his email joseherbals28@gmail. com

    ReplyDelete