Zoe Stauch, of Eldersburg, is beating Leukemia, and being a kid. (Jon Kelvey, Carroll County Times)
Zoe Stauch loves photography. On a Thursday evening in early October at her parents' home in Eldersburg, the 7-year-old eagerly arranges family and guests for portraits with her Fujifilm Instax camera, a compact instant printing camera that comes with a stylish blue carrying case.
"It started last year," Zoe says of her transformation into a shutterbug.
It was last year, also, that Zoe and her parents, Lyndsey and Bryan, were to take a trip to Walt Disney World, but it had to be postponed because Zoe wasn't healthy enough to go: She hopes to take a lot of pictures on Oct. 19, when the family will finally make the trip.
"Zoe was diagnosed with acute lymphoblastic leukemia, two days before Christmas, Dec. 23, 2015," Lyndsey Stauch says, explaining the Disney World delay. "What started as a mere ear infection turned into a never-ending fever that ultimately resulted in some abnormal blood work."
There was a referral to Sinai Hospital, in Baltimore, another blood test, and then on Dec. 23, a bone marrow biopsy and the diagnosis. Zoe would need to be admitted immediately.
"I was mentally already preparing myself that that was what they were going to tell us, though I was hoping and praying that it wasn't going to come true," Stauch says. "Once they told us, I was more worried about her reaction because she was going to be in the hospital for Christmas. What 5-year-old wants to spend their Christmas in the hospital?"
As it turned out, they needn't have worried about Zoe's buy-in.
"I remember that first day," Zoe says. "I was, 'Yay, I get to spend the night!' "
Thus began more than a year's journey through pediatric cancer for the Stauchs.
"You really don't know at any given moment what's going to happen," Lyndsey Stauch says. "You have to be able to roll with it on a dime and know that things are going to change quickly."
"We had to take turns with emotions," Bryan Stauch adds. "Whoever is down, the other person fills the gap. Initially, I took it — I was devastated, but Lyndsey was very strong at that point. Then as time goes, she has her moments and I have to step up."
Treating children for cancer is different
There are a lot of ways in which pediatric cancer is different than cancer in adults. The emotional toll it takes on the family as a whole is one of them, according to Dr. Aziza Shad, one of Zoe's oncologists. Shad is the head of the Herman & Walter Samuelson Children's Hospital at Sinai and also sees patients at the Mount Airy Health and Wellness Pavilion.
"When a child is diagnosed with cancer, the entire family is affected," Shad says. "We as pediatric oncologists, and as a pediatric oncology program, need to cater to the needs of the entire family."
Shad helped introduce numerous programs at Sinai to that end, including Hope for Henry, which helps distract and entertain children during painful procedures such as blood draws, and Tracy's Kids, an art therapy program Shad said is run at Sinai by a woman Shad herself treated for cancer when she was a child.
For Bryan and Lyndsey Stauch, who said Zoe went from apprehensive to excited to go to the hospital after getting involved in art therapy, these programs meant everything.
"The stress that leaves my body when we walk in there knowing that she is excited to walk in there and see her friends," Lyndsey Stauch said. "Yeah, she's not excited to get a needle stuck in her chest, but she is excited to be able to do these things while she's there and it completely takes her mind off why she is really there."
It's Shad's philosophy that for childhood cancer patients and their families, this is more than just an adjunct to good oncological care. Rather, it is essential to it.
"Psychosocial support cannot be divorced from medical support," Shad says. "You can provide the best medical care in the world, but if you don't attend to the psychosocial needs of kids and their families, you are not doing your job right."
This is especially true at a time when pediatric cancer treatment is becoming more and more effective, Shad says, especially in comparison to the early 1980s, when she left her home country of Pakistan to come to the United States.
"The first thing is to address the myth that cancer is incurable, because in most cases children survive their cancers," she says. "You have to start on the positive trajectory with the families right there."
Another thing Shad believes all families should know is that they are not alone — there are many families fighting childhood cancer and families should ask their oncologist to help connect them with support groups and programs like those Zoe enjoyed.
Lastly, "There is no such thing as a stupid question," Shad says. "When a parent asks a question, it is an important question for us to answer. That should be the philosophy in a pediatric cancer program."
That whole approach, Shad says, is driven by the fact that pediatric cancer patients are children, and you can't treat children as if they are just smaller adults.
"Kids have to remain kids," she says. "Our struggle is to keep them feeling like kids doing the normal stuff that kids do, while we are treating them for a life threatening illness."
Life as a kid
For Zoe, life has become more and more that of a typical kid as of late.
"She is in the maintenance phase of treatment at this point," Lyndsey Stauch says. "Life is as normal as it potentially can be while you are still in treatment."
Zoe has her photographs to take and a Disney World trip to take. Then, in January, the Make a Wish Foundation is sending Zoe and her parents on a trip to Hawaii — she wants to drink out of a coconut.
But what Zoe and her parents are most looking forward to is the date of Feb. 25, 2018. That's the date she takes her last dose of chemotherapy.
"To say we are excited for the end is an understatement," Lyndsey Stauch says.
At the same time, she says, there will always be that bit of parental anxiety, wondering if the cancer could come back: Zoe will continue going down to Sinai for checkups — monthly, quarterly, eventually annually — for the rest of her life.
"Somebody said to me or us when she was first diagnosed there is the BC and the AC: Before Cancer and After Cancer," Stauch says. "It's always going to be a part of our life."