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A Difficult Journey

Circle of Care Offers Comfort to Families of Children With Cancer

Article by Robin Moyer Chung

Photography by Jeff Salguero

Originally published in Westport Lifestyle

At 7:45 a.m. on December 10, 2001 Liz and Jeffrey Salguero put their two daughters on the elementary school bus and drove to a pediatric hematologist in Guilford; they had no appointment, they were just told to go.

Earlier that fall, on September 12, their distress concerning the World Trade Center was interrupted with more bad news: something was wrong with their two year old son, Carlos.

Inside the doctor’s Guilford office, letters papered the office walls. The first one they saw read “Thank you for saving my child’s life.” Their hearts sank: this doctor was also a pediatric oncologist.

More blood tests came back inconclusive, so Carlos had to endure a bone marrow aspiration and a spinal tap.

At 2:00 p.m. the tests came back positive. Leukemia. “There’s a bed waiting for you at Yale,” said the doctor. “He needs a red blood transfusion, platelet transfusion, and be prepped for surgery to have a port inserted tomorrow and starts chemo in 48 hours. You’ll have to call someone to take care of your girls.”

Instantly, they were thrown into the dizzying, terrifying world of parenting a child with cancer.

They drove to the hospital, admitted their boy, and spent the next few hours watching him be poked, prodded, and hooked up to an IV.

By 8:30 p.m., Carlos was finally asleep. A nurse turned to Liz and asked, “Mom, what can I get for you?” Liz looked around. She hadn’t been home since early that morning and had nothing with her. “A toothbrush?” She responded.

The nurse smiled and returned with a tiny toothbrush and a single-use tube of toothpaste.

Liz finally broke down and cried. A son sick with cancer, a stark hospital room, and nothing to comfort her, not even a decent toothbrush. “This is now my life,” she thought.

This is what happens when a child is diagnosed with cancer. The illness pulls a curtain down on life, drawing a skim around itself and the child. A parent must commit themselves full-time to the endless and erratic needs of this sickness. The other parent is left to provide for the rest of the family, financially and physically. If, of course, there are two parents.

Today, Carlos is a cancer-free, handsome young adult with a degree from Tulane.

But back in 2003, before he even completed chemo treatment, Liz, with Dawn Ladenhein, started Circle of Care. “We want [families] to know that other families have gone through this, and they’re going to be okay,” explains Liz. It began with three initiatives:

  • Bag of Love for families on the day of admittance with sundries and necessities and a fleece blanket with flannel pillow case to add color the antiseptic hospital room.
  • The Purple Pages, “A vetted directory of local and national resources the families will need - camps, where to get wigs, how to talk to the school and how to prepare your child and the classroom, eligibility for IEP and 504 programs - what you’re entitled to and what questions to ask.”
  • Caring for a sick child is financially debilitating for 70% of the stricken families. 15% of these families declare bankruptcy. They began fundraising to help families cope with monetary stress.

After chemo, Carlos was officially in remission. In his summer before kindergarten the weekly visits became monthly. Which sounds great, but it’s not. It meant the Salgueros - and every family - has to/had to wait three more weeks before knowing their child was still well. And because leukemia is tough to keep away, “We didn’t let go until Carlos was ten years in remission.”

So they expanded COC’s programs to care for families beyond their hospital routine. One of these is “Art from the Heart,” a bedroom make-over.

A volunteer design team meets with a COC child to brainstorm their dream bedroom. Then they spend 4-8 weeks creating it - new furniture, paint, wallpaper. They hold a special unveiling for the child to see his/her new space.

It’s tough to overstate the importance of a fresh interior to a child whose life revolves around the discomfort of sickness. One mother wrote to the COC team of her daughter’s reaction: “I wanted to share what Ivy said to me while we were resting in her room: ‘It’s like I didn’t have cancer in this room’.” 

Almost 20 years and numerous volunteers later, COC has evolved in both scope and size, for families and patients, for kids and young adults in remission.

A recent gala borrowed its theme from kintsugi, the Japanese technique of repairing broken pottery with gold lacquer. Kintsugi transforms accidents into art, boasting the beauty of its journey rather than hiding its history.

Portraits were hung of COC children, gold paint covering and displaying their port scars.

Sickness is one of our most difficult journeys - for the infirm, the parents, the siblings and the loved ones - but the beauty of humanity is often revealed at its most vulnerable.

For more information visit TheCircleOfCare.org

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