#SimplyStrong: Tayah Jade

It was at a fundraiser at the end of 2013 that I held the door open for a tiny, shy little girl who quite obviously was fighting cancer. She was sweet and timid, quiet at first–overwhelmed by the attention. I would soon learn that her name was Tayah Fairbrother and when she was just shy of 5 years old she was diagnosed with neuroblastoma, a form of childhood cancer that forms primarily in nerve tissue. Some say it is rare, but pediatric cancer was only rare when I was ignorant to it. She was gifted a princess crown by someone she looked up to, and when her eyes lit up I fell in love with this tiny, beautiful little girl before me. She was shy at first but after some colouring and some chit chatting I was wrapped around her little fingers, and more than anything I was captivated by the way her father, Mark, spoke of her journey and the injustices they were facing as a family desperately trying to save their child.

tayah

Neuroblastoma is an ugly, relentless, aggressive cancer that has only one known protocol. She underwent countless rounds of chemotherapy, radiation, surgeries, bone marrow biopsies, tumor biopsies, needle pokes, and took endless medications when it was finally coming down to the final phase of treatment. Tayah was undergoing immunotherapy, a therapy that essentially teaches her body to identify neuroblastoma cells and kill them using her immune system–trust me, this treatment is harsh, it is painful, and it is just as grueling as chemotherapy. Her parents were just briefly beginning to allow themselves to see the end of this madness as she was nearing her final rounds, cautiously optimistic they call it. Then just as they were about to exhale, they got the worst news they could have possibly imagined at that moment…Tayah’s sweet body was no longer NED (No Evidence of Disease), she had relapsed with neuroblastoma in her liver. Immunotherapy was stopped immediately and her parents were told to take her home. You see, there is no regulated treatment for neuroblastoma relapses and truthfully most children don’t survive, but that wasn’t our cue to give up. Not our Tayah.

With hope in the back seat along with their sweet baby girl they drove back home to their quaint home north of Toronto. They desperately tried everything available to them, I mean everything. Tayah was put on alternative treatments, all natural and herbal supplements, dairy, sugar and red meats were eliminated from her diet to name a few. Her parents truly gave that their all and it worked, the tumor markers were down to normal levels in her body, the scans weren’t lighting up any more. She was doing better. We had dance parties and play dates, we talked about PJ parties and had movie nights complete with popcorn and a disco light. She loved dancing almost as much as she loved life, and you could see that in her eyes. Again, just as we were merely starting to think of exhaling again things turned awry. In November, I got an awful text message from her mom.

“Tayah is back in the hospital. She’s not going to make it through the night, she wants Christmas.”

I didn’t have time to ask questions, the next few hours were a blur. I ran to Walmart and bought lights and an angel for her Christmas tree, thanks to the child life department at the hospital every other wish was granted. I got to the subway and the second text came,

p.s. bring PJs

PJs? For Tayah? Does Tayah need PJs?

No. For you. PJ Party

I lost it in Old Navy, in the middle of the mall. I promised Tayah a PJ party and now we were going to have our own impromptu PJ party that night for the first and last time. When Tayah’s mom asked her what she wanted for christmas, she said she wanted a frisbee, where was I going to get a frisbee at 10:00 at night? But I found it, I found it and it was delivered. I wish I could have given her so much more, I wish I could have saved her. tayah-2I met her parents at the hospital who had set up a mat at the end of the hall so they could be in and out of Tayah’s room. I composed myself and went in, and snuggled up next to her.

I spent the night laying bed cuddling her, playing with her little fuzzy hair that was just starting to grow back, rubbing her face and trying to remember every single thing I could about her. After medication tweaking and adjusting, she was comfortable and so peaceful. Still waking briefly to ask for juice, or watch TV, or talk to us. I don’t think I fully processed what was going on, I just listened to her talk, watched her sleep and watched every breath. I watched her chest rise and fall, and pray that it would rise again. We would switch in and out, taking time with our Tayah. Each time I was snuggled by her side I would whisper in her ear, “Hey…Tayah? I love you” she would faintly respond “I love you too” but she was so sleepy. “You know I love you so much right Tayah?” “mhm”. Finally it was in the early hours of the morning that I started to head home, how could I walk away from this little girl who instilled so much in me knowing it may very well be the last time? The kisses didn’t stop right up until the second I had to leave. I over snuggled and she had enough at one point, she made sure to let me know of it. I gave her one last kiss and I walked away with my breath held, hoping that I wouldn’t break down yet. As I turned to walk out the door and was immediately called back, “Sabrina? She said she wants more kisses” I would do anything to be able to snuggle her and kiss her again today, I wish I never left. The last picture I have with my girl, is a picture of her hand in mine…a feeling I hope I will never forget.

tayah-8

Tayah’s hand in mine

Tayah held on and she fought so hard, that Monday in November wasn’t our last. I visited her as often as I could, even in her journey ending she made sure that we knew she was a fighter. She proved everyone wrong and sent expectations flying right out of the water, it was grueling to walk away each time not knowing if it was really goodbye but every hello was so worth it. Every day that she held on was a testament to Tayah and her strength.

Eventually, on December 17, 2013, I got the phone call I was dreading: Tayah Jade Fairbrother became an angel in heaven just as she was our angel here on earth. Her story is a testament of strength and happiness in the darkest of moments, Tayah had a love and passion for life that was beyond her years, she brought so much joy to everyone that had the opportunity to love her; she danced her way through life and through cancer. At only 5 years old I wish I had the strength that she did. Tayah was not just a cancer patient, she was charmer, very intelligent, she loved to dance and to sing, she was a 5 year old girl that was, is and will always be loved beyond measure. Her existence is and always will be celebrated and I’m reminded of her in so many beautiful ways each day.

Since that day there is nothing anyone could ever say to convince me that one person cannot change a nation. One person can do unbelievable things. Tayah’s life sparked a movement, a pay-it-forward opportunity to give to families just like theirs that are spent in the hospital. The joy that Tayah brought to this world is immeasurable, I am confident that it is so much brighter because of her. Though it hurts to miss her immensely, I am so grateful for the time that I got to love her.

Godspeed sweet Tayah, I love you so much.

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