The Butterfly Still Flies Strong

September is Childhood Cancer Awareness Month.  Unfortunately, this is something I know a little about.  Though I have known a handful of cancer survivors in my life and am one myself, Childhood Cancer is a gut wrench for me.  For a tiny person to have to comprehend and endure what I am going through each day is ridiculous, and yet I know someone who has had to.

Flower girl , September 2014

This is my friend Scarlett.  Isn't she beautiful?  Just a few weeks ago she walked down the aisle as a flower girl in her uncles wedding.  Next month she will be four.  She can tell you the name of about a dozen plastic animals, and pulls them out of her purse to show you.  Her favorite things are dance parties, playing with Cosmo the wonder puppy, nature, and driving her mom and dad wild. At my house she likes to do chalk drawings, climb the couches and stairs, and play with blocks. Her family and I will be going to Disneyland during ‘The Year of Yes,’ and I just can't wait.  She is a thrill seeker, and I am always happy to foster new generations of those.

Scarlett's First Birthday Blood Drive, 2011

These are her amazing parents, Brandi and Chris Wecks.  They were high school sweethearts and went to prom together.  Then they went to college, got married and continued to support each other through first careers.  When I met Brandi she was teaching at Stevenson here in Mountain View. 

She and I became friendly while I subbed throughout the district.  Stevenson is a parental participation school that prides itself on project based learning and hands on techniques.  Brandi quickly learned of my art background and started requesting me to sub on their school wide art days.  This is when I started to get to know the rest of the staff.

One day in September of my second year subbing, I got a call while at another school site that Brandi had requested me for her upcoming maternity leave, she was expecting ‘The Butterfly.’  I was so excited for her personally and myself professionally, I flew straight over there after I had finished my assignment for the day.

Shortly after we started team teaching to get the kids used to me and myself knowledgeable about their classroom norms, conferences followed by a family emergency for Brandi took her out on leave early.  So the kids and I flexed to each others style, and we put a little paper baby cut out on Brandi’s due date on the calendar.  A few weeks later, I got notice that Scarlett had arrived and adjusted the calendar baby to the right date and put her name on it.  Our calendar lesson was very exciting that day! 

A few weeks before December break Brandi started attending staff meetings and developments again, sometimes bringing the tiny pink Scarlett with her.  It felt like the beginning of the end of a time I had enjoyed so much.

Unfortunately, December brought darkness and uncertainty.  I got a phone call as winter break was starting from a coworker: she had just talked with Brandi, there was something going on with Scarlett and she would keep me updated.  Ominous.  Over the weeks of break more information was fed to me from reliable sources that the most unbelievable thing was in-fact true.  
At Scarlett’s two month appointment, what they thought was a bruise over her left eye was actually a brain tumor the size of a small adult fist.  There was talks of hospice care, second opinions, lots of visits to doctors all carefully blogged by Brandi and Chris.  www.starringscarlett.com  They have been blogging for four years now.

In January, I was forced to take on the uneasy task of explaining to our classroom community what was going on.  Because it is such a tight knit group, much information was already swirling about when school got back in session in January.  So, when we arrived back at school I sat down on the rug with a group of twenty six and seven year olds and said, 

“Scarlett is very sick.  There are many doctors and nurses trying to help her get better.  We are not sure if they can, but they are going to do everything they can. When you are sick your mom and dad want to stay with you, and do everything they can to make it better, don't they?(nods and murmurs)  That is what Mrs. and Mr. Wecks are going to do.  They are going to be with Scarlett as much as possible while the doctors and nurses take care of her.  Since Mrs. Wecks is needs to be with Scarlett, I am going to stay with you.  I will stay for as long as Mr. and Mrs. Wecks need me to.”

I never used the word cancer, tumor, cranioplasty or death with those kids.  They were six and seven years old, and such big words simply bring fear of the unknown.  I needed to use serious words that wouldn't scare them but that would allow them to understand the gravity of the situation.

And they did.  They wrote letters and drew pictures, asked daily for updates.  On what we called ‘Doctor days’ (surgeries and scans) they all wore and drew butterflies.  Even though we were studying penguins, that classroom was full of butterflies.  Shortly after the initial kid conversation, I had a similar one with the parents, with the help of my coworker Amanda.  This is when we used the real words congenital glioblastoma, multiple surgeries, second opinions, chemotherapy, and chance.  They started collecting donations and set up a food calendar to do what we could in this time of need.  My only request was to not ask me for updates in front of the kids.  My job in this catastrophe was to stay strong for them, and I did, I hope.  I taught every day for the rest of the school year, including three months with bronchitis.

Scarlett's First Birthday, October 2011

In the spring three bright faces visited our class one day.  Two I recognized, one much smaller and partially collapsed, but the bright eyes of a tiny baby I had once met were staring back at me.  This is when the tears came.  I just grabbed the smiling Chris and started bawling, when he asked what was wrong I responded with, “Nothing, absolutely nothing, I am just glad we are ALL in the same room together!”  For some of the kids seeing  Scarlett for the first time was a miracle, for others it was hard to look at a little baby with a caved in face.  We talked about our emotions the next day, and for many days after.  

Over the course of the next three years, Scarlett endured a dozen surgeries both to remove tumor growth and reconstruct her skull.  She has received over two dozen rounds of chemo therapy, and more blood transfusions than we can count.  She has relapsed once, and been in remission for about a year now.  Because she spent so much time in the hospital during her youngest months, she has a feeding tube because her sucking reflex development has been stunted.  Chemo damaged her cochlear hairs, leaving her very heard of hearing.  She wears hearing aides, signs and speaks.  Due to multiple brain surgeries, her mobility was slow to develop, she just started walking earlier this year, it was the second most miraculous thing she has done yet, behind opening her eyes after that first surgery.  Scarlett will always have developmental delays because of all she has gone through, but she persists and keeps going.  Weekly, she has preschool at an amazing school for the deaf, physical therapy, family sign language class, and more specialists than I can keep straight.  She inspires me.  Her parents are the definition of heroes. 

Scarlett and I at my wedding 2012, she is one and a half

I feel grateful to know and be a part of their story.  When I received my diagnosis this time last year, Brandi was one of the first people I contacted.  Her knowledge lead my first rocky days down a smooth path for which I am forever indebted.  Scarlett had to go through more in her first year of life then I have had to in just a year worth treatment, and they are nearly over.  She is the reason I know I can do this.  She gives me hope and reminds me to have endurance.  

I am still close with many of the kids in the class Brandi and I shared that year.  When my diagnosis came, their older and wiser selves had a flood of memories and a more mature, concern.  This is when I realized my job was to continue to be that example I had been during Scarlett’s diagnosis.  They are older now, fifth graders, and can understand so much more, but they are still children, for whom we must model strength in challenging circumstances.

My shirt for her Second Birthday Blood Drive, 2012

Two times I have explained cancer to a group of people under the age of ten,   Some of them were the same people under ten.  If you find yourself in a similar challenging situation, I hope I can be of assistance.  Keep in mind their age, and what they can comprehend and not be scared.  Use words they know, medicine and doctors work better than chemotherapy and surgeons.  The age of the child and their previous experience in the medical field will impact their reaction, be mindful.  Kids who have only known elderly people with cancer will react differently, as their outcome was complicated by their advanced age most likely.  State the facts and tell them you are open to questions.  In some cases these questions may need to be answered privately because one child may be able to comprehend more than another and again, fear.  Be honest, validate feelings, and listen.  It is okay to be afraid, scared and uncertain.  Learning to feel our feelings is an important part of the growth process and helps kids learn empathy.  Give them an outlet, drawings cards and letters satisfy busy hands and frantic minds.  Communicate with whole families, so as adults we know the harder truth of what the situation is.  We can also support our little ones by keeping each other informed and nurtured.  Keep the dialogue open, questions still come my way about Scarlett regularly.  Kids have huge hearts and openly give love to those who earn their trust.

The Wecks Family September 2014

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Today is day two of five for round 16.  Then there is round 17, followed by ‘The Year of Yes.”  YES!