16 Blocks of Ribbons Mark Girl's Astonishing Path Home from Hospital
Afflicted with a cancer so rare it has never been seen in one so young, 'Cookie' Topp is put through the wringer along with her donor-sister, and now family and friends look forward to homecoming.
It started with a handful of green ribbons tied around trees near a home on secluded Mary Ellen Place – a show of support from neighbors to neighbors in need of a pickup.
Then, more and more tree trunks sprouted green cummerbunds, reaching north to Wisconsin Avenue. Then the procession marched west down Wisconsin all the way from 76th Street to 92nd Street, every tree along the way wearing an emerald sash.
The ribbons, some already fading to yellow, mark the way home for Kathleen "Cookie" Topp, 13, a cancer patient at Wauwatosa's Children's Hospital of Wisconsin.
But for some late complications, she'd have made the trip already, but she's expected to follow the ribbons within the next week or so, back to the bosom of family and friends.
Once again, Wauwatosa has shown how much it cares for its own.
So rare... it has never been seen
Cookie's ordeal started last summer with what looked like a minor skin eruption.
"She had a spot that looked like a bug bite on her leg," said her mom, Linda Price Topp. "Then there were two, and in a couple of weeks there were 14."
No matter what they did, the spots weren't going away but instead increasing, so Dan and Linda Topp took their daughter to the doctor. Next stop, dermatologists. Then, more specialists. Nothing kept the spots from spreading, nobody knew what the condition was.
Finally, two biopsies were performed. The results were inconclusive at first, but in the modern world of digital communication, the question spread around the major research institutions in the nation.
The answer came back from Cornell University in New York. Cookie had an extremely rare lymphoma, called Cutaneous T-Cell Lymphoma.
Rare it was, indeed, but not unheard-of. Then why so hard to diagnose?
The cancer of the skin is actually related to leukemia and is buried deep in the immune system, in the bloodstream's disease-fighting cells. And when it appears, it appears in men from 50 to 60 years old.
How rare is it, then, in a child?
"There was no pediatric data," Price Topp said. "None."
A team is formed, a regimen planned
With nothing to go on in an unheard-of child's case of a already rare cancer, Children's Hospital reached out again, Price Topp said.
"It had never been seen at Children's, and apparently never been seen or recognized anywhere," she said. "They contacted Northwestern University and NYU, and together they formed a team.
"But we all agreed we wanted her to be here at Children's. We live just down the street. She goes to school here. This is where we wanted to be."
Doctors from Children's went to Northwestern twice to present the case before the institution's Tumor Board, Price Topp said. The Topp family took Cookie there three times.
Three rounds of chemotherapy were scheduled. Three rounds turned into six. And then a decision had to be made.
"They recommended to go straight to the bone marrow transplant," Price Topp said. "With men from 50 to 60 years old, they just do treatment, they don't even try to cure. But we decided we had to try for a cure."
A sister gives what only a sister can
You always start with the closest relatives.
Cookie, then 12, has two sisters, Ann, 14, and Claire, 9. Ann would prove an almost identical genetic match – important when you're concerned about the body not rejecting a donor.
On Feb. 2, doctors began destroying Cookie's own immune system. There could be nothing left in her that would try to fight off what was coming. That's a necessary precursor to a successful transplant of this magnitude. They were planning on replacing every element of Cookie's bloodstream with Annie's.
On Feb. 8, Annie went under the knife for her sister. Bone marrow, a major source of all blood cells, including immunity-ensuring white cells, was harvested from Annie's lower back.
"Within hours, it was infused into Cookie's bone tissue," Price Topp said.
Then began days and weeks of watching and waiting.
"For days and days we got reports," Price Topp said. "Nothing. Zero. Then, on Day 12, Annie's white cells showed up.
"From then on, it's been up and down. It increases a little, then goes away. It's been a rollercoaster. But over time, it's climbed."
Two steps forward, one back, Cookie's white blood cell count is increasing. If it weren't for a gastrointestinal problem last week, she'd be home by now.
The hope is, she'll be making her way down the emerald aisle of Wisconsin Avenue in about another week.
It's Day 31 since the transplant, Day 40 since Cookie's compromised immune system was first intentionally attacked and annihilated. The prospects are so far good, but there are goals still to be met.
"After three months," Price Topp said, "Cookie will have Annie's blood type. She will go from being A-positive to O-positive."
Yes, despite having a near-identical genetic match to her sister, Annie had a different blood type than Cookie. When all is said and done, Cookie will go through life from now on with only her sister's blood – and none of her own.
"The science is amazing," Price Topp said, "and I don't pretend to understand it – how they can be so close and yet different."
Family learns a lesson about cancer, decides to give
As a homecoming looms for Cookie – her classmates at St. Jude the Apostle School have been wearing "One Tough Cookie" T-shirts – Price Topp has been pondering not only her situation as mother but as a survivor in her own way.
"When this hit our family, we didn't know anything about cancer," said Price Topp, marketing director for the Marcus hotels in Milwaukee. "It took us to our knees."
Price Topp said that nearly living on the "hot unit" of Children's, the fifth floor where the oncology patients lie, while her daughter was in near-constant isolation, she got to know "the other families."
Families from all over the region, faced with terrifying diagnoses, not knowing what to expect or hope for.
"I really wanted to get involved and give back," Price Topp said.
She launched Facebook and web pages devoted to fundraising for the fight against lymphoma and leukemia and hopes to raise at least $25,000. But she has a higher goal.
"If we get to $50,000," Price Topp said, "there will be a research grant in Cookie's name."
You can donate to the Leukemia and Lymphoma Society through Linda Price Topp's Facebook page or through a dedicated web page on the site of the Leukemia & Lymphoma Society.
These web donation sites and local events benefit not the Topp family but the fight against the family of leukemic and lymphomic diseases.