Lebanon high schooler Elizabeth Cook is spending this week of her summer break organizing a weekend yard sale, stocked with old toys that she and her sister don’t play with anymore.
But instead of spending the proceeds at the mall or the movie theater, she is putting them toward her little sister’s funeral expenses.
The 15-year-old girl’s family found out in May there was nothing more doctors could do for her 11-year-old sister, Katherine Cook, who has aggressive brain tumors. She was given a few months to live, said their mother, Victoria Cook.
“Well, apparently funerals cost a lot, and we don’t have $1,200 — I mean $12,000 — to just shell out,” the 15-year-old said. “So we were also doing a bake sale, we are going to make a GoFundMe page.”
Katherine has lost all of her hair and has difficulty speaking. She lies next to several stuffed animals — an emoji laughing so hard it’s crying, a penguin from the movie “Happy Feet” and a Minion, given to her by a local police officer.
“His heart works, everything else doesn’t,” Katherine said of her favorite stuffed animal, the penguin she calls Happy. The toy is so worn out that Victoria jokes about the condition of the animal, and Katherine thinks it’s funny.
When doctors said they could no longer help the child, Victoria said Katherine was in fair physical condition, given the circumstances. Then, in June, Katherine’s speech started to slur after the family went to a Cardinals game. Her condition steadily worsened since then, and Katherine can no longer swallow food.
A hospice nurse now visits the home to help with her medical care, including monitoring and controlling her blood pressure levels, Victoria said.
Katherine was first diagnosed with the fast-growing tumor, called medulloblastoma, July 5, 2015. She had surgery three days later, followed by radiation and chemotherapy later that year. She lost about 75 percent of movement on the right side of her body, Victoria said.
Between 250 and 500 children in the United States are diagnosed with medulloblastoma each year, according to St. Jude Children’s Research Hospital. Survival rates are between 60 and 80 percent, varying on circumstance and whether the tumor spreads.
Since the day Katherine’s family got the news, Victoria said it’s been a roller coaster of scary diagnoses, surgeries and fleeting feelings of optimism.
“Her last chemo cycle was September 2016, there was a shadow in a scan in October of 2016 and we were hoping she had sneezed (during the scan), but it wasn’t a sneeze,” Victoria said. “So we had about a month, almost two months of ‘ahhhhhh’ ... We had that celebration, then it came back.”
Victoria said the family learned the girl’s tumor had returned on Nov. 15, 2016. Katherine went through another round of surgery, radiation and chemotherapy.
Katherine spends most of her time now in a hospital bed in a room off the Cooks’ kitchen. Several months ago she lost the ability, even with assistance, to get up the stairs to her bedroom.
There are still bandages on her head from her brain surgery less than two weeks ago, but the 11-year-old still can find some energy to talk about games she likes to play. One of her favorites is Cards Against Humanity. Talking about the game makes Katherine smile, despite the tumors that have taken over her body.
“There was a card in there that would always crack me up,” Katherine said from her bed Wednesday. “It’s like we would lay down the card, and I would be the first one to play it. I can’t remember what it was though.”
Victoria said some people may raise their eyebrows at an 11-year-old playing the adult card game. But the mother doesn’t see the harm if it brings her daughter — and her family — some joy.
The family hasn’t told Katherine how long the doctors think she will live and has no plans to tell the 11-year-old.
“She was scared at first,” Victoria said of her daughter. “She asked a lot of the ‘Am I going to die?’ questions back in 2015.”
Victoria said she and her husband, Chris Cook, always told their child it would be fine.
“When it came back the second time, that’s when Katherine started to say things like, ‘OK, whatever,’” Victoria said.
She said the girl’s brain scans in February this year were clean, but her scans in May showed the original tumor was back “and brought a lot of friends.”
Her sister Elizabeth said she feels frustrated with the way the doctors talked about the diagnosis.
“I was just scared that this was going to happen — they told us, ‘Oh, it’s going to be an easy year,’” the teenager said of the first diagnosis in 2015. “And then (the tumors) came back ... And now it’s like, ‘There’s nothing left we can do.’”
Elizabeth stays composed, saying she needs to be strong for her parents and her sister. She says she keeps the stress and emotions of the situation to herself, not even confiding in her close friends. She’s always been very close with her sister, though.
“She doesn’t open up as much as we want her to,” Elizabeth said of Katherine. “She kind of just goes with the flow.”
Victoria said a clinical trial will take place in two weeks, testing a drug that could halt the growth of the tumors, but not eliminate them. She said if Katherine is still able to participate, she will.
“Everybody wants more time, and nobody is going to be ready,” Victoria said of her daughter’s impending death.
Elizabeth’s yard sale will be held from 8 a.m. to 3 p.m. Saturday and Sunday at 425 West Schuetz St. in Lebanon.
The family is accepting donations. People can drop off items for the sale any time at their home on West Schuetz Street.
You can donate to the family’s GoFundMe campaign at www.gofundme.com/final-expenses-for-katherine-cook.
Cook family yard sale will be held from 8 a.m. to 3 p.m. Saturday and Sunday at 425 West Schuetz St. in Lebanon.