When doctors found eight-year-old Tati’s cancer, both she and her mother were stunned. That’s when our Pediatric Palliative Care team stepped in. We supported them through Tati’s treatment and shared their joy as Tati defied the odds.
As a single parent, Shevorn was used to being strong. When doctors said her 8-year-old daughter Tati was in the last stage of puberty, Shevorn stood strong. When an MRI showed a brain tumor and Tati had surgery, Shevorn stood strong. But when doctors told her Tati’s tumor was cancerous, Shevorn was shocked devastated.
“I remember I sat there for like 10 minutes just looking into space and like wondering how are you going to tell Tati that she has cancer,” she shares. Fortunately, Shevorn was about to learn she didn’t have to handle this alone.
Meeting the Pediatric Palliative Care Team
Marilyn is a manager for the VNS Health Pediatric Palliative Care team and Johana is a VNS Health social worker. They met Tati and Shevorn shortly after the diagnosis and quickly became a lifeline for the family.
Tati didn’t really understand what was going on, and her mom was very scared. We were there to support Shevorn.
– Johana, VNS Health social worker
Marilyn admires Shevorn’s strength and says, “Nothing stops her from doing what she has to do for her child.” But she also points out how hard it would have been for Shevorn to manage this on her own. One of the challenges Shevorn faced was making sure to have the finances needed to cover Tati’s care, while also supporting her family.
“The amount of financial problems that come up with a single parent who has to go to the hospital on a train, buy lunch, all these things on a woman who has a very limited budget and four children she has to care for. So, we have to get her help financially as well as help her emotionally to deal with all the things that are going on in her life.”
Shevorn shares how VNS Health helped her and Tati. “It alleviated us from having to run to Manhattan to the doctor’s office all the time. I can call Marilyn or Johana if there is a problem.” She also explains how our team offered emotional support. “[The nurse] came in as somebody who cared. In a health care setting, you have to have that compassion because you don’t know what the family is going through.”
Dealing with a Setback
Chemotherapy followed Tati’s surgery. Shevorn remembers, “That was horrible. I remember [Tati] said to me, mommy, I don’t want to die. And I was like, you’re not going to die. We are going to get through this. We are going to fight this. Cancer is strong, but you have to be stronger.”
Unfortunately, Tati’s tumor came back, and she needed a second brain surgery. After her surgery, she was weak on her right side and had severe vomiting. Tati had to stay in the hospital for months, barely eating or drinking. When doctors said Tati should have a feeding tube, Shevorn chose another path.
“I decided to take her home. She’s going to see people coming in and out that love her and talk to her. Food is going to be cooking where its going to stimulate her taste buds. And I brought her home. It’s hard. It’s really hard, but at the end of the day, you are your child’s strength.”
Luckily the palliative care team was with Shevorn and Tati every step of the way.
Caring for Children and Their Families
Pediatric palliative and hospice care support children with serious conditions and their families. Palliative care can be provided at any point during a serious illness, while hospice care is provided near the end of life.
Our Pediatric Palliative and Hospice Care:
- Take a broad approach to care
- Aim to improve quality of life
- Focus on easing symptoms
- Consider the child’s physical, emotional, and social needs
- Include family support
- Usually occur in the child’s home
- Are provided by a team with experience, training, and compassion
These services can help families like Tati’s get comprehensive care and the resources they need to continue receiving care.
Rewriting Their Story
Thanks to her mother, Marilyn, Johanna, and the VNS Health team, Tati was able to recovery in her home. Her path to recovery led to her enjoying a healthy, active life. Johana explains that Shevorn has always talked about wanting Tati just to be a kid. Today, that’s exactly what Tati is doing. She’s involved in dance, singing, and fashion shows. Her chores include cleaning up the house and keeping her room neat. She has a lot of friends. And when asked if she has any heroes, Tati quickly replies, “My mom.”
Tati sums up her journey in one short story. “Once upon a time, there was a girl named Tati. She was eight years old, and she had cancer, and she went through chemo, radiation, and stuff, and it was very hard for her. But she got through it and kept pushing and never gave up.”
I just sit back, and I think of everything that we have gone through and where we are now, and I’m grateful.
– Shevorn, Tati’s mother
Shevorn and Tati aren’t the only ones who are thankful. Marilyn credits Tati and children like her for changing her life. “The best thing I can do in my career is take care of these children and their families. Make it just a little bit easier to get through this experience so that you’ll be able to say to them, whatever you’re going through, I’m going to be there with you all the way.”
Your donation can help families like Tati and Shevorn as they navigate pediatric palliative care.
For more information about giving, contact our development team at 1-212-609-1525 or [email protected].