Wednesday, November 26, 2014

You matter more than you know.

Greetings all, and Happy Thanksgiving Eve!

Before I get to talking about Amie's 2nd ringing of the bell, signifying her end of radiation for the 2nd time, I need to talk about just how awesome and amazing a group of people are.

The above picture is Kristan, the Child Life specialist who works with the kids who are getting radiation.  Her job is help the kids have a calm and fun experience before they start radiation, and then to navigate the radiation therapies themselves with the least amount of stress, anxiety, or frustration.

Radiation, for you new readers, is a much more extensive thing than chemotherapy.  In chemo, we'd get 1-5 days of chemo, usually in-patient.  Radiation is quick (10-25m per session), but happens every day for weeks on end.  This time, we had 21 sessions of radiation, each time in Ann Arbor.  

Every day, when we arrive, we'd walk into the Radiation Oncology playroom and find Kristan setting up a craft, a game, or some other activity that would bring joy to Amelie.  I cannot possibly explain to you how much joy this brought to her to know that every single day someone amazing was going to be there waiting for her, to do crafts and play.

Shelley was really, really disappointed to learn earlier this week that Kristan was not going to be there for her last day in radiation.  Kristan held Amie last time when she got to ring the bell, and Amie adored her for it.  Kristan was heading up north for her husband's side of the family's Thanksgiving, and needed to leave immediately after work on Tuesday to get there.

While driving to Mott, she said to me that she really hoped that someone was going to be there from Child Life, because Amie really wanted to paint her Spider-Man mask after her treatment (more on that later).  If they weren't there, Amie wouldn't be able to do that.

When we rounded the corner, the entire Child Life staff (minus Kristan) was there.  All of Amie's best hossabill friends.  Jennie, J.J., Stephanie, Mariana, and well as Kiersten from music therapy.  They had all dressed up in pink (more on that later), and J.J. even improvised a cape, with J.J. and Molly covering themselves in pink post-it notes, as they hadn't worn pink that day.

Shelley and I were immediately overcome with emotion, seeing that they had all ditched all their other responsibilities to come give such an amazing send-off to my daughter.  The level of dedication, love, and affection that showed towards Amie  Want to know how overwhelmed I was?  I forgot to get a picture of them sitting there after we arrived. :)

To the Child Life staff who was there today (if you read this):  Thank you from the bottom of our hearts.  You made our lives today.

When Amie finished her radiation treatments this summer (in July?), she asked people to wear pink to celebrate the experience.  Most of the staff wore them, as well as our family.  It was an explosion in pink. As it worked so well last time, they decided to do it again, and  Amie was able to ring the bell again surrounded by an explosion of pink.

She was quite tired today, and as such, was really overwhelmed by all the attention...but that's par for the course for any interactions with Amie after her 12p nap these days.  As I said previously, she has a few really strong hours in the morning, and then fades quickly in the afternoon, and crashes really early for the day.

After she finished radiation today, she was able to paint her Spider-Man mask.  Last time she painted it red.  This time...she wanted to paint it Rainbow. 

Amie did almost all the painting herself, as the palliative radiation has done exactly what Dr. Robertson said it would, giving Amie a relatively pain-free few weeks, and far more muscle control over her body.  

She's got full control of her torso, bladder, and bowels...and probably 70% control of her legs and movement.  She has 0 desire to walk, but she will walk with someone holding her under her arms and supporting her...if you make her.

The masks that they make for radiation oncology are there to stabilize the head, ensure their lack of movement during the therapy itself, and help them line it up exactly for each treatment.  They do so much work to make the therapy as benign and happy as possible, that the mask becomes a non-entity in the experience.  

But to me, it's a scary as hell artifact of a scary as hell experience.  I am not claustrophobic in the least.  I fell asleep during my only MRI.  However, the idea of having my head strapped to a platform while radiation is streamed into my head... that's creepy as hell.

So Amie painting her mask, and us hanging said mask in our living room on the wall is both awesome and horrifying in the same moment.  It's a torture instrument, an artifact of hope, and a medical instrument all in one simple device.  Ahhh, cancer treatment.  What a devious monster you are.

Now:  For my big plan.  I need help.  From you.  My loyal readers.

Amie loves jokes.  I can't find a specific video right now of just her telling a joke, but there's several inside of videos we've already posted.  Anyway, the below two images, which are from a card that Grammie sent to Amie a week ago or so, explain perfectly the sweet-spot of jokes that Amie loves to tell, and hear.

Her jokes are simple, easy to understand for a 4-year old, and often revolve around animals.

Here's one of her current favorites:

What's a bird called in Winter?

A Brrrrrrrrrrrrrrrd.

So, your mission, if you choose to accept it:  I need jokes.  Fitting the above description.  Lots of them.  Possibly hundreds.

Send them to me in Facebook messages.
Send them to me in texts:  810-513-3180
Send them to me in emails:
Send them to me in actual mail:  email me for our address

Thank you, giant loving community of people who care for Amie.  You matter more than you know.