Through My Eyes: Behind the Scenes Look Into What Cancer Leaves Behind

Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes.  Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer. 

  • Perspective: Cancer Mom & siblings
  • Name: Erin, Grant & Sophia Santos
  • Daughter/Sister: Isabella, passed away at 7 years old
  • Cancer: Stage 4 Neuroblastoma
  • Diagnosed: 10.04.07
  • Passed Away: 06.28.12
  • Feels: Happy

Erin was featured on our social channels ( Instagram & Facebook) on 9/5/19 to share what cancer has left behind 7 years after neuroblastoma took her daughter, Isabella. It’s real and it’s raw… just like childhood cancer.

Cancer Leaves Behind a Big Brother: Grant, 12 years old

Cancer Leaves Behind a Big Brother

It’s hard to see how he has been affected.  He will be 13 this month and emotions are all over the place.  Pre-teens are very invested in themselves and Snap Chat, unhealthy foods, sleeping late and iced coffees. He doesn’t bring her up much anymore.  When I do, he is very accommodating to the conversation but quiet.  

We found ourselves in Ballantyne on Labor Day and I figured we should swing by Isabella’s site for a family visit.  Since I don’t go often, we as a family don’t go often either.  We pull in and get out of the car.  I do my normal kiss of the stone and say, “Hi Baby.”, to which Sophia usually copies.  Grant just sits on the bench and says nothing.  After about 5 minutes, he gets up and gets in the car.  Leaving just Sophia and I to say goodbye.  We pull away and I look over at him.  His eyes are full of tears.  I grab his hand and say, “You ok, bud?”, but I get a pre-teen nod as he gazed out the window.  

Later that day I snuggle in bed with him and talk with him about her.  He tells me how different it would be to have her with us because he has become the older sibling.  He is the one that takes care of Sophia and doesn’t remember what it was like before that. If she were here, he would get asked daily if they were twins.  He’s 5’6 now so there would be constant teasing on who is taller.  She would have fought me on the move a little but once we got here, she would be walking the neighborhood with her friends, getting coffee at Earl’s Grocery and talking about boys.   She would be a freshman at Myers Park with her BFF Soliel, and she would tell Grant every day how much he stinks.  He’s probably dead on with these observations.  

I tell him that I’m going to send him this blog I wrote in 2014 about “What Cancer Left Behind” and I leave him to his late evening nap.  I don’t pry with him because I know he is tired, per usual.  I go about my night cooking dinner, working and watching TV.  But what I notice is the sound of videos playing.  The rest of the night he spends in a deep dive of the Foundation website.  Videos, blogs and pictures.  Every once in a while, he comes down to me and wants me to watch something with him or laugh about something she said in a video.  It warms my heart to see him listening to her voice or hearing the things she said about him.  He is genuinely touched by it all.  What I watched was him become aware again of his sister.  I guess that is my job as her Mom.  She wouldn’t want me to shove her memories down his throat.  But maybe to just occasionally remind him she was there – loving everything about him.  It’s so obvious in pictures and videos.  I loved watching him remember last night.

Cancer Leaves Behind a Little Sister: Sophia, 9 years old

Cancer Leaves Behind a Little Sister, Sophia

Can I have two completely opposite children?  Sophia would talk about her all day every day.  She would tend to her grave site daily if she could.  She still tries to peak into the side of the columbarium as if she could somehow catch a glimpse of her inside.  She takes the lead from me and copies my hellos and goodbyes but the thing missing in her visit is pain.  

Later that night as she takes a bath, I pull up a chair and ask her how she is doing with Isabella being gone.  “I’m Great!  I’m very happy!”.  God, I love her.  She talks about how she misses having a big sister and how close they would be if she were still alive.  I have to giggle a little bit because I can’t imagine how close a 14-year-old would be with a 9-year-old.  They would have moments where Ib would let her in, but they would be rare.  “I would come to her for advice on everything!  We could explore everywhere by our new house together too!”.  Bless her.

She goes on and on about how amazing Isabella would be if she were alive.  She would be kind and nice to everyone and take care of people who have cancer like I do.   She tells me that she isn’t scared to get cancer because she knows if she did that, I would take care of her and save her and make sure she didn’t have cancer anymore like Madison.  She doesn’t understand why people are like, “whatever… cancer.  Don’t they see we need their help?  I wish cancer never existed.”  She may take over my job one day.  

Cancer Leaves Behind a Mommy: Erin

After talking to both of my kids I realize after all these years that I’m an exact mix between the two.  Like Grant, I find myself being less aware of her, maybe my defense mechanism.  I have to live my life.  But then when I start down the rabbit hole, I allow myself to take it all in and drown me.  I search for those rare videos where I get to hear her voice. My favorite ones are the ones that have no real meaning, nothing deep.  Just videos of her dancing or the time I interviewed her about her life to pass the time.  I don’t want to see the bad pictures or read about the day she died.  I don’t want that in my life anymore.  

Cancer Leaves Behind a Mommy, Erin

But like Phia I find that I too am very happy.  I’m settling into my new life with the kids and each week watch them find excitement in this move they were once dreading.  They are meeting kids at their new schools, walking to playdates in the neighborhood, suggesting their favorite places for dinner.  They too are building a new life.  Every day my choices are confirmed that closing up that house and her bedroom was the right thing for our family.  

I still struggle for sure.  Sometimes I think we are too closed off from her.  Our fourth bedroom that would have been hers has a treadmill in it.  Her clothes are down in Ballantyne in a unit at Morningstar Storage.  The house is still coming along so other than her picture next to my bed, there isn’t much presence here of her.  We are working on this.

My life is filled with new people who never met her.  I’m even in a new relationship with someone who just knows a high-level story of her and days that I might need a little more hand holding.  New friends seem interested in the Foundation, but maybe just because it seems hard for them to believe this was my life before they knew me.  Very few times do I have deep conversations about her with anyone, and I miss that.  I find that I’m less fragile – much stronger.  Sure, loud noises still get me, and my anxiety may run a little high, but sometimes I find myself enjoying being hugged again.  Progress.  ☺  

But I know over the years I will continue to watch my kids deal with her death in waves.  Long periods of time with nothing – then random nights filled with questions where it carries them out to a deep state of grief.  I’ll be here for those nights and I may have some of my own too ahead.  I just need to keep reminding myself to stay aware of her, even if I can’t open her bedroom door or hold her favorite dress in my hands each day.  She is still here.

Ways to take action:

  • DONATE
  • FUNDRAISE as an Awareness Ambassador
  • REGISTER for the ISF 5K/10K For Kids Cancer event on 9/28
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THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES

9/2:  We Have Stopped Making You Aware

9/3:  Through My Eyes: This is Childhood Cancer