The Moment

The Moment

This is a speech written by our friend Cassandra Farrugia.  The Farrugia's (Peter, Cheryl, Cassandra & Nicole) have been good friends of ours for years and have spent lots of time with Stella since her birth.  Cassandra (Age 16) had a school assignment in which she was assigned to write and deliver a speech whose subject was a defining moment in your life.  Here is Cassandra's Speech. It is heartfelt, beautiful and extremely meaningful to us---just like the Farrugia's:

Life is made up of moments and in capturing these moments we find worthiness in living. We experience emotions and what it feels like to be alive. Whether captured on film or simply a vivid picture in your mind, these are moments, some we’d like to remember and others, to forget.

Good afternoon fellow classmates and Miss Vono, my name is Cassandra Farrugia and today I will be talking about one of my saddest moments.

I believe in the contrast between happy and sad. You usually cannot experience one and not the other. Of course, everyone would much rather be happy then sad, but it doesn’t really work that way. Experiencing pain or sorrow is part of human nature. I believe that it’s okay to feel like that. I think it makes you feel alive, experiencing such raw emotions like these. It proves that you’re actually aloud and capable of feeling something.

DIPG, one of the very few cancers that actually has a 0% survival rate is a rare and aggressive brain tumor.  Diffuse Intrinsic Pontine Glioma wraps around the brainstem, spreading through the nervous system, slowly but surely destroying one’s capabilities. Strawberry blonde curls, rosy cheeks, and a smile that could light up the whole room. She’s two and a half. Her name is Stella, Stella Joy. I like to say she’s living with a brain tumor, because, well, she is, but that is not entirely true. It’s fatal, it is a very rare and unfortunate type of cancer, and there is no cure. 

Now, that was a lot to take in, so let me back track and explain a bit further. We’ll start with the diagnosis. I will never forget the day I found out about it. I was in the parking lot of a Loblaw’s Super Centre and my mom said something I still, to this day, find hard to process “Stella is dying”.  Those words forever changed who Stella was and my relationship with her, it would be cut short, sooner or later. 

In the midst of June of 2011, Aimee and Mishi noticed that Stella was having some balance issues and difficulty walking. They didn’t suspect anything big, maybe just an ear infection. So they did a follow up at Sick Kid’s. The diagnosis came as a shock, a brain tumor, a few hours pasted and they learnt that it was fatal.

The tumor is inoperable. Stella’s parents and family had numerous consultations with some of the best doctors in the world. Methods like chemo or radiation may prolong her life but would have had a negative impact on Stella’s quality of life. And this, above all, was the most important, so no further harsh treatments were pursued.

She’s a trooper, to say the least, every day she is forced to take lots of medicine including morphine, just to ease the pain. She may be two and a half, but she knows more than we think. She’ll hold the back of her head in anguish, “momma, my head hurts.” She would cry.

Stella has a blog site where anyone can donate, look through pictures or videos, and read and reply to blogs written by Stella’s family and friends. Sometimes the blogs are about her progress, other times they are a mixture of raw and pure emotions somehow put into words. Stella has her ‘bad days’ when they’re thinking “this is it” and sometimes Stella has really good days, where she springs back to life, so much so, that the thought of her dying with a brain tumor is completely  pushed to the back of your head.

Here’s a little bit from a blog from last month: She understands more than we think. Two weeks ago she looked at the solar system screensaver on my laptop and said with absolute conviction, “Mama…I want to go there.” “Go where?” I asked, confused. “To the stars” she said, touching the screen. Ahhh. The stars. “Of course,” I thought, of course the sky is the only place special enough to hold you until I can see you again. “Yes,” I told her “You can go see the stars soon.” She nodded solemnly and sagged back into the cough, content and confident in my promise. 

I am not blood related to Stella in any way but my family and I most definitely love her with all our hearts. My mom used to work with both Aimee and Mishi at a treatment centre for adults and children with complex disabilities. However, their lives changed, they got married, and up until Stella’s diagnosis, Aimee had been working at a camp for kids with cancer, ironic right? 

We threw birthday parties pretty regularly for Stella. One special day out of every month, it was her day to blow out candles and see lucky dog. What two year old wouldn’t want a party every month? Eventually, the tumor started to take control. Now, it has left her unable to walk, talk without struggle, sit up unassisted, feed herself, and her sight is declining. This all crept up on our little bundle of joy with an unfair warning.

Now, quickly, let me stop the Stella talk for a brief story, a ray of sunshine. On October 20^th 2011, Sam was born; a bittersweet addition to the family. Stella choose the name Sam because one of her favourite book series is Stella & Sam. Evidentially, Sam can also stand for Stella, Aimee, and Mishi. He is still a very new edition to the family, so there isn’t much to say but Stella loves him very much, as she says many a times every day. She is very protective over her little brother and takes a lot of pride in being a big sister. I could never begin to try and explain what I feel when I’m in a room with both Stella and Sam. I am presented with the face of death and such new live that I am not quite sure how to feel. There is so much happiness and so much sadness all at the same time. All that I know for sure is that there is love forever flowing in and out of that house. 

I will start to sum things up with a recent party we had with Stella before she started to lose control of her abilities. It was on September 25! CHRISTMAS FOR STELLA! With the uncertainty that came with her tumor, tomorrow was never guaranteed (but really, is it ever?). Anyways, with the chance of Stella not being around for Christmas, we threw a huge Christmas bash! Turkey, presents, decorations, a tree, and of course a visit from Santa. Once she got comfortable with my dad, I mean Santa; he made sure she asked him to wrap all her gifts up again, wanting to open them at home, sharing with her cousin Gracie. 

I have realized that my speech has been all over the place, jumping from one thing to another, very jumbled. Quite frankly, it’s because it is. My thoughts are scattered when it comes to Stella so I refuse to stand in front of you all and scientifically prove that Stella has cancer. Her diagnosis follows no rule book, a few days ago she hit her five months, and the doctor’s only gave her three. Stella has no frame of reference for what she is no longer able to do. She isn’t old enough to remember too far into the past and she has no immediate concept of the future. Therefore Stella lives each day in the moment, a lesson that should be learned and practiced by each and every one of us. 

Since day one of the diagnosis, Stella’s parents have known that they cannot add days to her life and for that reason they continue to add life to her days. This included summer cottages, trips to the beach, ice cream, birthday parties, sesame world, play dates, kisses to keep for later, and lots and lots of love. More than anything, Stella’s diagnosis has taught me to be grateful for what I have. It has brought many people together in things such as fundraisers and auctions, donations, and stuffed teddy bears. They have the support of their family, friends, and a whole community. There is financial support because of generous people, some of which are strangers that have reached out to Stella and her family.

Stella is many things. As evident early, she is a force to be reckoned with. She is inquisitive. She is intelligent. She is hilarious. More than anything else, Stella is her aptly given middle name: Stella is joy.

One of Stella's many birthday parties

Christmas in September 

Peter Farrugia, meeting Stella for the first time (May 2009)