18 January 2012
Just a few days into the New Year, Lexie and Alyssa, two sisters, are playing with a Christmas gift. A friend of their dad, Jeff Divers, gave them a Nintendo Wii, and they’re flailing with controllers in hand to try to win a Wii Fit Plus snowball fight. Lexie’s long blond hair bounces, and Alyssa’s on screen Wii avatar is bald, like her. Alyssa will turn 10 on Feb. 25. This will be her second birthday dealing with the effects of cancer.
“There are great things about losing your hair to chemo,” says their mother, Lynn Litchfield Divers, showing off a book she and Alyssa made called “101 Great Things About Losing Your Hair To Chemo.” A few things include discovering you have freckles on your head and never having to comb tangled bed head.
Although jokes about chemo show that the Divers family is more at peace with the specter of cancer then they were a year ago when it was first diagnosed, the chemo, surgeries and 26 hospital admissions have taken their toll. While both Lynn and Alyssa are still radiant and feisty as ever, Lynn no longer dyes her hair or wears make up and Alyssa is bald from the chemo and a mere 69 pounds. They live day to day.
“Having cancer in the family creates a kind of intimacy of forced intensity that is a gift, but the cost of it is tremendous,” said Litchfield Divers.
Litchfield Divers became a well-known minister in Virginia from her attempt to stop the execution of Teresa Lewis. In September 2010, Lewis, an inmate at Fluvanna Correctional Center for Women, was the first woman executed by lethal injection in the state of Virginia. Just three and a half months later, Alyssa first complained to her mom about pain in her left knee during a tap class. By February 15, 2011 it was diagnosed as a rare form of bone cancer, osteosarcoma.
“The first six months were awful,” said Litchfield Divers. “She was just in agony all the time. It was a two person job to get her down the stairs.”
Even for a child with bone cancer, this was not normal. Alyssa had an undiagnosed broken femur caused by the tumor (located near her left knee). This was just one of the many complications they’ve endured.
“We’re just over three-quarters of the way through treatment,” said Lynn. “It’s a 40-week protocol. We’re stalled out in week 31 right now. Delays don’t count,” said Litchfield Divers.
Right now they’re delayed by Alyssa’s low platelet count. The five weeks Alyssa was in recovery after surgery in May to remove the tumor and replace the femur, knee, and top of her tibia with an interior prosthetic was also a delay. As were the seven infections she’s contracted from a chemo-weakened immune system.
“She has no ability at all to fight infection. We go to the hospital every time [she has an infection], and she’s put on antibiotics, which come with its own problems. The more antibiotics you do, the more likely you are to get c-diff.”
C-diff, slang for clostridium difficile, is an intestinal bacteria that can cause serious infection when positive gut flora are wiped out by antibiotics. C. difficile has become more severe and difficult to treat in recent years because many of the bacteria have grown anti-biotic resistant. It’s a looming phantom on the horizon for a little girl who has no other way of fighting infections.
Litchfield Divers pulls out a two-inch thick binder labeled “The Big Book of Die Tumor Die Stuff” where she keeps track of Alyssa’s cancer treatment, and counts the number of chemotherapy treatments Alyssa still has left. (The mantra, “Die tumor, die!” has turned into “LIVE ALYSSA LIVE!” It’s the way Litchfield Divers concludes every blog post she makes about Alyssa’s treatment.)
“She has five more rounds of chemo, and she’s done 16 so far,” said Litchfield Divers. If no more delays occur, Alyssa could be done with treatment by March 12, but the chances of that are slim. “Historically she gets an infection after her marrow suppressant treatments. I’m going to add five to eight extra weeks to that.”
Litchfield Divers has found comfort in communicating with families of other children diagnosed with Alyssa’s same cancer through the CaringBridge website, where she writes an eloquently and raw blog updating people on the progress of Alyssa’s treatment.
“I’m following four other little girls who are also in her age range who also have [oseteosarcoma] on CaringBridge. They’re all over the U.S.”
Part of her blogging experience has forced her to face the deaths of other children with cancer, and realize it could be a reality for Alyssa as well. Osteosarcoma only has a 65% survival rate.
As an ordained reverend, meeting and bonding with other children with cancer has many times prompted the question on her blog – “Surely God has enough miracles for us all, right?”
“You don’t just want to ask for your child. There are so many kids. All of them need miracles; every last one and they all merit them. They work hard, they suffer tremendously, and they endure and endure and endure. I would so go to the back of the line for miracles so these kids could get theirs,” said Litchfield Divers. “You begin to feel selfish when you ask for prayers for your child when you know the child next door and their story and their families. Trauma bonds you.”
Alyssa escapes the terrifying reality of cancer through books and schoolwork, which she stays on top of with the help of her homebound teacher, Ms. Lascano and assigned fourth grade teacher, Ms. Davis.
“That’s her escape. Some people like dolls, she likes books,” said Litchfield Divers. “Camp Friendship, where she was taking gymnastics, gave her a kindle. That was a very wise gift. It’s hard to find a book or a series she hasn’t read. If she doesn’t feel well enough her daddy starts reading to her.”
Finances and contributions
In addition to Fluvanna teachers and Friendship Gymnastics, other locals have pitched in to help the Divers family as well. Salon DeShano gave haircuts in April where the proceeds went to Alyssa’s care, Mesz bakery held a bake-a-thon, Maddie Grubs and Gracie McWilliams set up a lemonade stand in Kents Store this summer, Belmont Baptist did a love offering, Mooreland Baptist held a pancake breakfast and music festival, a friend held a Mary Kay facial day, and Rooms for a Reason came in and redid Alyssa and Lexie’s rooms so they would have someplace cheery to be during this anything but cheery time. Alyssa’s best friend and nearby neighbor, Shae Lynn Jonkman, also keeps up with her, visiting and spending the night whenever she can.
“That’s all really helpful,” said Litchfield Divers. Other people who’ve read her blog also send Alyssa incredibly generous gifts like new laptops, iPods and Nintendo DS games to keep her busy during her stays in the hospital. “For a family that didn’t do a lot of electronics, we now have loads of them.”
In terms of medical expenses, so far their insurance has helped to pay for much of the high-priced treatments, but there have been a few surprises.
“Thus far I’ve been pleased with our insurance coverage,” said Litchfield Divers. “But, there are certain things that Alyssa needs that just aren’t covered like the oral phosphorus – but she has to have that or she will die. Those are about $50 for one prescription, which sometimes only lasts a week and a half. You get surprises like that.”
Litchfield Divers and a nurse manager assigned to their case will challenge such surprises, but are usually denied. They just got their second denial for oral phosphorus coverage.
Cancer takes its toll
Besides Alyssa’s health, the largest toll cancer has taken is on the Divers family dynamic. Lexie, Alyssa’s little sister, struggles to get her attachment needs met and Lynn and Jeff’s marriage is also on survival mode.
“When people ask, I say the second hardest part if having a child with cancer is that I have another child that doesn’t have cancer and still needs her mother and her sister and her father,” said Litchfield Divers. “She’s really suffered. She did really, really well at first because it was a lot of play dates, but then the play dates get old because you miss you mother and your sister. One of the lies that we didn’t understand was ‘keep things normal for the other sibling,’ but even normal activities were not normal – she was going to them, but she was all alone.”
Alyssa was no longer on the bus with Lexie on the way to school, nor did mom and Alyssa accompany her to dance class or visits with Grandma.
“Her abandonment and struggle was pretty intense. It’s affected her relationship with her grandmother and me,” said Litchfield. Lexie wakes up with nightmares about anything from monsters to losing her sister. “How do you comfort her when her nightmare is her reality?” said Litchfield Divers on her blog. After a while Lynn and Jeff decided to let Lexie get the hamster she had been begging for. “We figured it would be something that’s always home to nurture and fill a little bit of that void.”
Lynn and Jeff’s relationship has also been under a brutal amount of stress, with the lives of the children they dearly love hanging in the balance.
“We have almost no time together because we live separate lives – I’m at the hospital and he’s at work,” said Litchfield Divers. “We’ve had one date together since February and that was for our anniversary. People will tell you that you have to take care of yourself, and we might schedule a date, but then a fever comes up and you’re in the hospital for nine days.”
Living in the midst of life and death, she and her husband struggle to find something to talk about other than Alyssa’s treatment.
“Jeff goes to work so he can compartmentalize it a little, but this is all I do. It’s completely consuming. It’s all I Google, all I talk about, all I blog about, all I Facebook about. How do you have a discussion around something that doesn’t revolve around this all-consuming, heart-shattering situation? We need to talk about Lexie, we need to talk about school, but how can you?” said Litchfield Divers.
Living for the moment
Christmas was spent at home with family visiting. Travel has proved too difficult for Alyssa. In September the entire extended Divers family (22 in all) tried to take a relaxing family vacation with Alyssa to the Outer Banks, but Alyssa spiked a fever, and was rushed to King’s Daughter hospital in Norfolk.
“She didn’t ask for much for Christmas. People have been so generous, we haven’t had to ask for much,” said Litchfield Divers. In fact, Alyssa made a list. She calls it her “bucket list” of things she wants and it only consists of five things – swim with dolphins, horseback ride, eat crème brulee, beat cancer and live past 50. The family has applied through the Make A Wish foundation to go to Hawaii, stay at Disney’s Aulani Resort, and check the first three things off of her list. But, the last two are painfully out of anyone’s control. Until Alyssa can check all five things off her bucket list, the family is going to continue doing what they do, living day to day with forced intimacy and intensity, milking all they can out of precious moments – like virtual snowball fights.
To follow Alyssa’s story you can visit her Caring Bridge site at http://www.caringbridge.org/visit/alyssadivers.
Want to help Alyssa and other kids facing disease?
On the fourth floor of the Primary Care Center attached to the University of Virginia hospital, there is a small room at the back of the pediatric specialist clinic. In it there are two toy chests. Any time a child has to visit a specialist – whether it’s for nephrology, respiratory medicine, gastroenterology or oncology – a child is permitted to go back and select a toy.
“That’s a nice treat to go there. It gives them something to do while they wait,” said Lynn Litchfield Divers, Alyssa’s mother.
Toys do have to be in packaging, so if it is a new stuffed animal, simply put the toy in a Ziploc bag. Toys for older kids, around Alyssa’s age go quickly. The most popular items are Nintendo DS games, games for a portable video game system. Alyssa has also enjoyed a little motorcycle and joke glasses from the toy chest.
If you’re interested in donating directly to the Divers family to help pay towards their insurance deductible, tax-deductible contributions to Alyssa’s care are accepted by Mooreland Baptist Church - payable to “Mooreland WMU.” Please enclose a separate note indicating the check is for the Divers family. The address is: Mooreland Baptist Church, 2255 Taylors Gap Road, North Garden, Virginia 22959.