The Knot in Your Throat: Love, Death & Resurrection

Thalia self portrait

Some of us are blessed with angel guides here on earth. I met mine, Thalia Georgiou, 22 years ago. At the tender and ancient age of 15, Thalia peered over a precipice and saw her possible demise.  A tumor snaked around Thalia’s carotid artery, threatening to cut off the blood supply to her brain or empty her life’s blood should a surgeon’s hand err.  After receiving a death sentence in her home country of Greece, she arrived in New York City to prove her doctors wrong. She came for chemo to shrink the tumor, surgery to remove it, and radiation to prevent its return. She came to survive the odds.

Flashback — 1998 —

I get to know Thalia’s mother before I make inroads with the teen. Her mother attends a parent respite group that I co-lead with a social worker. Thalia prefers the jewelry making classes in the adult recreation program to the children’s recreation area where I work. But one day, she rolls her IV pole into the sun-drenched playroom and asks me for some time — in private.

As I close the door to my tiny office, Thalia reaches into her knapsack and hands me a clear, plastic bag.  “Open it,” she encourages me. I obey her and find a long braid of hair encased within. “Touch it. Smell it. Feel it,” she says.  “Look at how it’s red on the top and brown underneath. I dyed it once. See all the beautiful split ends. When I had hair, I hated split ends. But they are so beautiful now. Sometimes I tell my mom, ‘Get my hair. I want to sleep with it.’ And I curl up with my hair on my pillow.” As I follow her instructions and bring the braid to my cheek, she watches me expectantly, a faux panther tattoo adorning one side of her naked scalp.

Thalia puts the hair carefully away. In its place, she brings out several photo album pages. Holding them on her lap, she slides her chair close to me and points. “This is my neighborhood taken from my best friend’s house. You can see my house from here. This is the roof. See the little park at the end of the street, and the trees? It’s such a pretty street.” She shows me photos of boys, describing them as both friends and boyfriends. Thalia confides in me that one of them looks like a boy here at the hospital. “You know I was thinking. I’m away from home and very sick. He’s here, very sick. Why not?”

There are pictures of her best friend, a lovely girl who “took some of my boyfriends, but that’s okay.” In one shot, she and Thalia are at the airport on the day that she left for New York City.  The friend is clearly distraught and tearful. I say, “I can almost imagine what it must be like seeing you off, not knowing if and when she’ll ever see you agin., feeling helpless to do anything for you.”

“Yeah, and how do you think I feel?!” she retorts. “A million miles away from home, alone, facing death.”

A small gash appears in my heart.  “Are you facing death?” I ask.

“Well, when I came here they said that without treatment, I’d be dead in four months. Then they said that with treatment … well, they said that even if my tumor responds to treatment that I only have 30% chance anyway.”

“Do your friends know this?”  I am wondering how she is coping, who she is leaning on.

“Well, I told them all that I was dying right away.” Thalia smiles gleefully. “And you should have seen all the attention I got!”

I note that amongst all of the pictures, I see none of her father. She explains that she has drawings of him. She hands me a sketch pad. “I’ll show you my dirty picture first.” She turns the pages to a pastel drawing of a graceful, naked woman. A pencil drawing of a woman in lingerie, a handcuff dangling from her finger. And two drawings of her father,  profiles of him relaxing with music, with one shoe off,  and another at the beach. sporting long, curly hair and a hairy pot-belly.

 

There is a self-portrait entitled Mirror Image, August 1997. A slightly wary version of Thalia in pencil, braid intact, tilts her head to the left,  her eyes trained to the right at her own image in the mirror. I don’t notice any trace of the long scar from her initial surgery that presently runs along the left side of her neck, and so I ask, “Were you ill yet when you drew this?”

It’s as if she knows what I am asking. “My head was turned — see — no scar.”

We pour over many more drawings, each with a story to tell. The museum walk continues when Thalia holds out a large, heavy ring. It is silver with a jade stone. “This was given to me by a friend of my mother’s a long time ago. When I think of this ring, I think about my whole life, the mistakes I’ve made, the things I’ve learned from them. You know, when I came to the hospital, I really changed. I am not the same person I was before. And three days after I got here, the ring broke. It was so strong that a train could run over it. But look, I can’t wear it anymore.”

The last thing she digs out of her bag is a handful of three Greek audio cassettes. I ask her if she wants me to borrow them and listen to them at home. “Not exactly,” she answers and pulls a cassette player out with a flourish. She cues up a song for me and plugs me in. She translates for me as the music sears my eardrums.

“It’s like this. When there is a knot in your throat, and the ceiling is spinning, you feel your tummy is going to be ripped open. This is love, and it is death and resurrection combined, and it goes on and on and on.”

That hour spent with Thalia so many years ago serves as a permanent beacon in my work and life. Her humor, honesty, wisdom, and bravery continue to inspire me. She reached out to me on FaceBook when she turned thirty, and we remembered and laughed together, musing about the horror of that year, and the hope.  She returned to Greece after treatment and now makes a living designing and creating jewelry, clothes and wedding dresses.  She developed the building blocks of these skills while in the hospital. She was the kid who used her radiation face mask as a display model for homemade earrings and necklaces. She could turn torture into beauty – and she still does.

thalia mask

Thalia was married this past week to her soulmate at a castle in Italy. Here she is in the wedding dress that she created, in the life that she resurrected.

 

 

 

 

 

You can visit her Etsy shop and purchase her amazingly original designs at https://www.etsy.com/shop/THAGartDESIGN/items and follow her on FaceBook at https://m.facebook.com/ThagArtDesign/ and https://m.facebook.com/bloomingmusejewellery and her Instagram accounts are Thag.Art.Design and blooming_muse_jewellery. She models all of her works of art. Note the ring in the lower right-hand photo………

 

 

 

 

 

 

 

 

Bilingual Book for Pediatric Cancer Patients

My thanks to Marifer Busqueta for connecting me to this wonderful bilingual children’s book for children and families facing cancer:

 

nav_logo

 

The information below is copied directly from the book’s website benito books. Marifer herself has written a children’s book in Spanish to address children’s questions about loss and death, “I want to know what is death?”. It is wonderful to have access to books for Spanish speaking and bilingual children facing illness and loss.

17554104_10154206566695764_5630436754248429766_n

nav_logo

Home About the book News/Events Buy your copy

Overview

Benito, You Can Do It! Volume 1 is the first in a series of bilingual picture books for children diagnosed with cancer. This 80-page (40 in English and 40 in Spanish) picture book depicts a Latino family facing childhood cancer and uses a soccer analogy to explain the roles of the medical team.

Pages from the book

Written and illustrated by Alan Quinonez, this book helps parents find strength and hope when one of their little ones has been diagnosed with cancer.

Our Goals

The picture book series Benito, You Can Do It! has been inspired by the testimonials from the families in the Latinas Contra Cancer Parent Support Group as well as the expert knowledge and input of the medical team at Stanford’s Lucille Packard Children’s Hospital.

about_inspire

Our goals in developing this first-of-its-kind book series reflecting the Latino experience are:

  • To the affected families to share the resources, advice, and best practices learned from the cancer journey with their child.
  • To show the cancer survivors that this is an opportunity for them to step into the limelight and reach out to those who might lose faith.

The book series

Our first volume The News, helps children and their families cope with a recent diagnosis by providing a better understanding of the disease, and the medical team that will be helping them.

Upcoming volumes in the series are:

  • Vol.2 The Awareness (working title) Will explain how the immediate family of a child with cancer faces twice the risk of developing the disease, and what steps the family can take to reduce the risk.
  • Vol. 3 The Treatment will explain the different types of treatment and life at the hospital.
  • Vol. 4 The Siblings will help brothers and sisters process their own feelings of being set aside and neglected.
  • Vol. 5 The Return to School will explore the anxiety that children face when they go back to school before their hair has regrown.

Our fundraising on Kickstarer

From Sep 6th to Oct 6th 2013, we ran a kickstarter fundraising campaign.

Thanks to the generous donations from 171 backers, we were able to raise over $12,000, which allowed us to cover the costs of print, as well as set aside 110 books and make them available for free to families in need!

At our campaign page you can:

About the author/illustrator
about_alan

Alan Quiñonez is a writer and illustrator working on his dream of telling stories that cross language barriers and foster a message of hope and strength in children and families around the world. He lives with his partner in North Hollywood. His personal website is alanrq.com

About Latinas Contra Cancer

about_lcc

Latinas Contra Cancer is a decade old nonprofit based in San Jose, California. Founded by Ysabel Duron, a cancer survivor, this agency, one of the few of its kind in the country, works to improve outcomes for Latino families affected by cancer by increasing awareness and knowledge, access to care, and psychosocial support.
Learn more at latinascontracancer.org

Doll Ambassadors: Providing Comfort to Kids with Cancer

20160716-151336-bee-hdr_1_orig

Guest Blogger: Rosanna Bernstein – Founder of Bee Brave Buddies

When I had cancer and was going through chemotherapy, a white, curly haired stuffed poodle that one of my daughters gave me sat right on the pillow next to me at all times. I named her Gigi. Just looking at the quirky turned-up smile on this puppy`s face always gave me a feeling of comfort and made me smile.

I was diagnosed with Chronic Myelogenous Leukemia in 1998. I was in treatment for 3 years and was becoming sicker. A trial in its second phase for a new chemotherapy medication, specific for CML, now called Gleevec, was in its early stages at that time.  I was eventually accepted into this trial, and within several months I went into a remission. This chemotherapy was one of the first magic bullets, a medication targeted to treat the specific genetic mutation.  Although I still take a chemotherapy pill each evening, I have been so fortunate to be healthy and in remission to this day.

I was so grateful, that I decided I wanted to help others.

Through the years I have had several businesses: Yummy Gram, a gourmet basket company, Rosanna Hope Designs, a millinery and hand bag design company and Baby Bonbons, an online shop with vintage lace children`s clothing designs and accessories. During this time, I designed many original designs for baby blankets and matching pillows for the Baby Bonbons shop. I have always had a passion for art, beautiful laces and fabrics.

But, puppy Gigi always lurked in the back of my mind. I could still see that funny little face, and I got a warm feeling each time I thought about Gigi. I remember the soothing, inner peace I felt snuggling her. This feeling gave me the idea to combine my love of art and design with my desire to give back.

I combined my love for fabric and my whimsical children’s digital art drawings to design my original three Bee Brave Buddies dolls: Buddy Brave, a superhero doll for boys with magical powers, his twin sister, Bestie Brave, a superhero doll for girls, who is a true new best friend, and Catie Cuddles, a doll dressed in fancy lace who loves to cuddle and snuggle. I hope to use this same art process to design a line of Bee Brave Buddies Adventure books and other gifts for children.

My dolls were designed to become a new best friend to children who are in treatment for cancer or other childhood illnesses and who need a big snuggle and some magical secret powers to be brave. The three dolls are designed with beautiful bald heads. The girl dolls have special words printed on their long leggings: giggle, snuggle, love, dream, brave, cuddle, smile, laugh, hugs, play, dream, hope.

The dolls are also educational. An adult with cancer can use the dolls to explain hair loss and other treatments that children will face. Each doll comes with a matching hat or headband and the superheroes come with silky minky capes. The dolls have very soft plush pillow bodies to hug and love. Each doll comes in Caucasian or African American descent. Our dolls are printed and made in the USA. They are completely washable.

I have personally been giving my dolls to children with cancer since February of 2015. Bee Brave Buddies have been shipped to children across the USA and to several countries. We are excited to announce that we have now received our determination letter from the IRS and we are a 501(c)3 nonprofit. This will allow us to make and deliver dolls to children battling cancer across the country and beyond with your help and support.

 

What can you do to help? 

We are looking for doll ambassadors, an integral part of our team. They are like the generals in our army, helping us make big decisions: They locate hospitals in their area, make child life connections for delivery of dolls, are available for the doll presentations, help secure local press and manage social media regarding their particular hospital. Doll ambassadors also reach out to help us find local contacts to sponsor these boxes of dolls delivered to their local hospitals, either on a one-time basis gift or an ongoing monthly program.

Our new initiative, The Bee Brave Buddies of the Month Club allows a sponsor to send a box of ten dolls per month to a designated hospital. Our Christmas Holiday program encourages families or businesses to celebrate a holiday they will fondly remember, one in which they gave back to others. Our creative doll ambassadors put together teams from family, friends, businesses, corporations, church groups, school groups or sports teams that would like to rally for our cause. These are just a few examples of groups that can help us touch the lives of these children in a very profound way. Our dolls give the children comfort, courage and confidence. These seriously ill children only want to be normal and play! When the child smiles, the caregivers smile, and all of the medical staff smile. It is infectious! Our dolls provide these smiles when the children are hugging and loving them, much like my Gigi puppy provided to me.

9344858
Our mission is to put a Bee Brave Buddy doll in the arms of all children around the world in treatment or recuperation from cancer who need a hug to help these children feel brave and to provide emotional support to children and young adults with cancer and other serious illnesses. Any child battling cancer can receive a free Bee Brave Buddies doll to love.

If you would like to make a difference in the lives of these sweet children, drop by our web site www.beebravebuddies.com to learn more about our nonprofit and please join us today.

Warmly,

Rosanna Hope Bernstein

bbbbanner-960x270-for-weebly_2_orig