Atia's Final Spinal Tap

My Previous Blog > "Atia's Celebration of Life Party"

IMG_4454.JPGAt three years old, Atia has spent more of her life in and out of hospitals fighting for survival than not. She's mastered the names of complicated toxic drugs like, Methotrexate and Mercaptopurine, and often incorporates medical procedures into her make-believe play time. 

"I'm going to count to three and then poke you. I'll try to be gentle so it doesn't hurt" she tells Max, her purple teddy bear with white polka dots. "Good job!" she says. "And once the yellow stuff goes in, you're all done. You're such a brave bear. Do you want a princess or SpongeBob Band-Aid?" 

She doesn't remember back to the days before she was diagnosed. Taking chemo and having a port is the only life she's known. Every night before bed she says, "Mommy, don't forget to give me my medicine." I've learned that if I give it to her while she's asleep she doesn't even realize she's taking it. Several times she's accused me of falling down on the job. "Mommy, you didn't give me my medicine last night" she says, demanding an explanation. With a smirk I patiently reply, "Yes, I did. You took it while you were asleep." 

Fighting Leukemia has been part of Atia's daily life, our family's daily life for over two years.

IMG_5111.jpgAtia was a one year old when this all started - younger that Asher is now - and today she's almost four. A baby then, a big girl now. 

When she was first diagnosed, trying to picture how we'd ever make it through, trying to imagine what she'd be like when she was nearly four years old seemed like an impossibility. As the mother of a one year old, can you imagine your child as a four year old? What are they like? What will you be like?

 We grieved knowing that her entire 2nd year and most of her 3rd year of life would be a constant battle, different than her peers'. Atia being nearly four years old seemed so far in the future. And then, just like that, its happened. 

Yesterday was Atia's final spinal tap. She was sedated and received chemo injections into her spine and port. 

Going to the hospital she was a bit grumpy, but who wouldn't be? She was nervous and starving. Once we got there, she let down her guard and fell into routine. She knew what to expect. At certain points, she even burst into fits of laughter (captured in the video below). Her only complaint was the nagging ache in her ankle. 

It's difficult to describe exactly how we felt. 

While this journey has been incredibly long, yesterday it didn't feel that way. Everyone started throwing around phrases like, "not that long" or "seemed to go by quickly." That was the consensus amongst the group - Dr. Rubin, the nurses, other medical staff. And while Steve and I agreed with them, at the same time, it did feel long - How is it possible to feel two exact opposite things in tandem?

Same thing happened with our feelings towards the spinal tap. We felt confident that it would go off without a hitch and yet we were nervous that something would go wrong.

The one thing that really got me - I panicked - was when the sedation team told us they'd be using a different drug to put Atia to sleep (there was a minor complication last time with the one she'd been receiving all along). Of course, I understood exactly why, but my body still trembled with fear. I couldn't control my physical reaction. I was scared. The new meds allowed her to briefly wake up long enough after the procedure to take a few sips, but then caused her to pass out again for nearly five hours. It all worked out in the end. 

GREAT NEWS! Just before we left, we were told that in double checking their calculations, they identified that Atia's treatment end date is actually July 6th (not the 10th as we originally thought). Last night began her five day steroid and chemo treatment, which will end on Saturday. Then, she'll take her nightly chemo pill until next Wednesday, at which point she's done!

I took more pictures and filmed more footage during this appointment than ever before. It felt important critical to capture the moment, every moment, for all time. Here's a video of what the day was like - be sure to watch through to the end to see a special message from Atia.

Tonight, Atia's going to be mentioned on renowned radio personality, Delilah's syndicated show, which airs from 7:00pm to midnight. Atia has been selected as her "Brave Child of the Week" from Chicago in her "Together for Kids" campaign. Check out her website for local radio station information.

 

And finally, if you have a moment, please click below and vote for me. I've been nominated as a General Motors' "Our Town. Our Heroes" finalist. I could really use your vote. CLICK HERE

My Next Blog > "The Wiggles and the 4th of July"

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  • Wow! What a moving video! I watched it with the girls, and of course, they had a ton of questions! They know about Atia's condition, and of course, remember her from Davis's b-day party last year. They were sad, as I, to see Atia crying. However, we all loved the happy ending and Atia's message! How cool! Way to go, Atia! You are a strong little girl. And now, you are done with treatment! Woo hoo!

  • yay Atia! You are a brave girl! We are sad to miss your celebration, but we will celebrate with you no matter what!

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