Jennifer Lynn Kranz, or “JLK” as she is known to family and friends, loves wearing princess dresses and dancing, and believes wholeheartedly in Santa Claus.
But unlike most healthy children her age, JLK has spent the last seven weeks receiving radiation treatment at the Lucile Packard Children’s Hospital at Stanford University for an inoperable tumor in her brainstem, which means this Christmas might be her last.
An adopted child and oldest of four siblings belonging to parents Libby, 34; and Tony Kranz, 35; JLK is living with Diffuse Intrinsic Pontine Glioma, a rare type of tumor located in the middle brain stem that can’t be removed. About 300 to 350 new cases of DIPG are diagnosed each year in the U.S., according to the Weill Cornell Brain and Spine Center.
The diagnosis came on JLK’s sixth birthday, Oct. 28, when doctors informed the Kranzs their little girl, a kindergartner at Gilroy Prep School, might only live another nine months.
JLK was adopted into the Kranz family after five in vitro fertilizations, five miscarriages and a failed adoption. In one post on Libby’s blog, which she launched as a form of therapy and to thank people for their support, Libby recalls JLK’s nursery was decorated in dragonflies, a symbol that, strangely enough, is associated with passing on.
It wasn’t until after JLK arrived that the Kranzs conceived another three children: Jonathan, 4; Nicholas, 2; and Charlotte, 7 months.
The family moved to Gilroy from San Jose four years ago.
Now, two months after the initial diagnosis, the family – which should be setting aside money for their daughter’s college fund – is instead raising money to create memories; to move if their daughter qualifies for a clinical trial; to prepare for a funeral; and to rebuild the family when JLK is gone.
“She knows ‘cancer.’ She knows ‘tumor.’ She knows everything except for ‘prognosis’ and she knows I don’t use the word ‘cure,’” explains Libby, a stay-at-home mom.
Rather, Libby explains the radiation treatments to her daughter as a process that will help the tumor “shrink” and “make it feel a little bit better.”
The last two months have been trying for Libby, who has been living with her daughter in an apartment in Palo Alto Monday through Friday while JLK is treated at the children’s hospital. The pair, along with Libby’s 7-month-old, returns on the weekends to the family’s Gilroy home, while Libby’s mother, other family members and friends care for JLK’s other two siblings during the week.
There is presently no cure for DIPG; just ways to buy more time with the help of radiation and the hope its effects will shrink or keep the tumor at its current size long enough for a remedy to be discovered.
If the tumor begins to grow again, JLK’s family will try to get her into a clinical trial, which could be anywhere – including overseas or on the East Coast.
Libby plans to keep giving honest answers, even when the questions get really tough.
“If she does ask, ‘am I going to die,’ I’ll say ‘yes, some day, we’re all going to die. I just don’t know when,’” Libby explains.
Prior to each radiation session, JLK is sedated and falls asleep in the arms of her mother, who then lays her daughter on a hospital bed. Libby watches while a mask is strapped to JLK’s face, which keeps her from moving. This is very important, since the radiation is beamed at an extremely precise spot within a millimeter of the tumor.
For someone at such a tender age battling a harsh reality any adult would struggle to cope with, JLK still clings to her childhood rights – refusing to look anything less than fabulous for radiation treatments (she recently wore a flashy purple princess dress) and carrying a beloved teddy bear companion, Pinkie.
“My image of Jennifer is changing outfits every five minutes more or less and twirling around the dance room in front of the Christmas tree,” said Lauren Moller, one of Libby’s friends from Las Madres, a local mother’s group. “That’s Jennifer: nails painted, princess dresses and constantly changing her clothes.”
This year, JLK enjoyed five Santa encounters, including the one she rode alongside as Grand Marshal of Gilroy’s Downtown Christmas Parade. And while all of the Santas spoke differently and had unique red coats and white beards, she believed in every one of them.
“I think for parents, sometimes you want to tell kids about Santa and all that magic that is Santa, but you have to have that concern of lying to them or what it’s like if they find out,” explains Libby.
While Libby encourages her daughter to believe in Santa, the Kranz’s believe truth is the best policy when explaining things as grim as cancer.
When JLK noticed long strands of her brownish-gold hair were beginning to fall out, Libby recalls how one family friend tried to console her by telling her she wasn’t really losing hair.
Libby, however, decided to be straightforward about the challenges and changes her daughter will continue to encounter.
“I just said, ‘no honey, you are (losing hair) and I don’t know how much you are going to lose to tell you the truth, but here are some options,” recalls Libby, who told JLK she could cut her hair, or dye it bright pink, her favorite color.
DIPG will also cause JLK to lose motor function and the ability to swallow. She’ll maintain her cognitive abilities, however, meaning she’ll still be aware of what’s happening around her.
“That’s why, for me, we’re trying to do so much in such a short period of time,” Libby said.
And so is the community.
Donations have poured in – about $30,000 so far – and the family is using those funds to make choices that give them concrete memories of their daughter – including buying a fake Christmas tree this year so that JLK will always be a part of Christmas, as her mom puts it.
The Kranzs will still need to keep saving and fundraising. They figure at least $15,000 for medical costs if JLK is selected for a clinical trial and $10,000 for a funeral, plus some additional money to share life experiences together while they have time with JLK and to help the family heal when she is gone.
They also hope to save money to pay bills so that Tony can take time off from his job as a service manager at Cintas.
Plans for a foundation called “Thread” are also in the works. The Kranzs hope to launch an organization that will encourage the government to fund pediatric brain cancer research, since only 4 percent of government funds go toward pediatric cancers and even less of those funds go towards childhood brain cancers, Libby explains.
For JLK, there will likely be no rush of a first kiss, no graduations and no shopping for prom dresses, explains Libby in a blog post.
There will, however, always be Santa. And it’s this childhood “innocence” Libby is cherishing this Christmas.
“I think so much on all the things she’ll miss out on,” Libby said. “But she’ll never have the bad in life either.”
-To donate towards the Kranz family, go to: http://www.theyoungandbrave.com/warriors/jennifer-k/
-To buy a #loveforJLK t-shirt, go to:
http://love4jlk.org/?page_id=172
-Follow Libby’s blog:
http://www.love4jlk.org/
