In anticipation of the Nov. 2 Soles for Catholic Education walk to celebrate Catholic education, your Catholic Herald is running a series of articles featuring Catholic education in the Milwaukee Archdiocese.

Their baby was missing half of her heart, the doctor told them during a routine ultrasound.

Dan and Linda Topp prepared for the worst.Kathleen “Cookie” Topp, left, and her mother, Linda, right, pose with Laura McNally, Cookie’s favorite nurse who got her through six rounds of chemotherapy after she was diagnosed with cancer in 2012.

“The doctors were very concerned and mentioned to us that it was likely that Claire would not make it once she was born,” Linda said, recalling what she and her husband learned just 20 weeks into the pregnancy. “She would be born and live for a short time and her heart would not sustain life, so we went through half of the pregnancy like that.”

Fifteen doctors rushed Claire, now 9, away as soon as she was born, and to their surprise found her left ventricle existent, but small and underdeveloped.

She had open-heart surgery at 8 weeks old, followed by a slew of health problems that often landed her in the hospital in the first two years of her life.

When Claire was 2, the Topps learned that Jacobsen Syndrome – a chromosomal abnormality causing cognitive delays, a bleeding disorder, and a variety of health problems that continue to crop up unexpectedly – was the cause of her problems.

But they didn’t know until last year that the rough patches they’ve experienced with their youngest child since 2003 were preparing them for what awaited their middle child in 2012. They also didn’t know how much support they would receive from their faith and school communities as they again drew upon their faith to jump the next hurdle.

Family’s faith tested

“Our faith has been, I guess, tested, would be a fair way to say it, countless times over the last 10 years, right from the time we found out at 20 weeks pregnant with our third child that things were not going to end well, to today,” Dan said.

Thirteen-year-old Kathleen Topp is “Cookie” to her family, friends and peers at St. Jude the Apostle School in Wauwatosa. The name stuck ever since her sister, Annie Topp, 15, couldn’t pronounce Kathleen when she was little, but would say her favorite thing, “cookie,” while pointing at her baby sister.

Dan and Linda Topp credit their St. Jude Parish and School community with surrounding them with love when their youngest, Claire, left, was born with an underdeveloped heart in 2003, and again in 2012 when their second-oldest, Kathleen “Cookie,” was diagnosed with cancer. Also shown in this photo taken in fall 2011, is their oldest daughter, Annie, a student at Divine Savior Holy Angels High School, Milwaukee. (Submitted photos courtesy Linda Topp)A swimmer, volleyball and basketball player, Cookie had been the healthiest of her sisters until early July last year when she came home with what looked like a bug bite on her leg – one that just wouldn’t go away.

“She was tired. She was losing weight, no appetite, so we went to the doctor,” said Linda, director of sales and marketing for Marcus Hotels. “They ran some blood tests. They couldn’t see anything initially, and she kept getting more of these sores on her legs.”

The first biopsy results were inconclusive.

The second: Cookie had Cutaneous T-cell Lymphoma, a rare form of blood cancer usually found in 50- and 60-year-old men – a cancer so rare in children that pediatric data doesn’t exist.

Cancer not lymphoma?

During an initial meeting, the doctor introduced himself and turned to Cookie – she was about to learn more about “lymphoma,” the word used by her parents.

“‘Do you know why you’re here? You have cancer. I am a cancer doctor, this is a cancer clinic and you’ve got cancer,’ and he just starts with the conversation, and about 10 minutes into it, he had to step out for something and Cookie just looks at us,” Dan recalled, beginning to laugh about Cookie’s tone and facial expression. “She looks at us, she goes…”

“‘You didn’t tell me it was cancer!’” Linda finished, laughing at the memory.

It was a funny moment that set the stage for how Cookie would handle what lay ahead.

“It totally broke the tension in the room, and from that minute on, she’s handled it so, with such a level of maturity. …” said Dan, regional director for a technology company. “That in itself is a blessing.”

Their team of doctors at Children’s Hospital collaborated with doctors from New York University, Northwestern University, Cornell University, even a doctor in Italy. They told Dan and Linda they didn’t want to treat it with chemo like they do with adults diagnosed with this type of cancer; Cookie would need a bone marrow transplant because they were going for the cure.

It happened that Annie was a match.

But the transplant would have to wait.

Chemotherapy begins

“You’ve got to get her to remission first, so we started off right away, got the diagnosis Aug. 22, started chemo right away in September and did six rounds of chemo…” Linda said of the chemotherapy that lasted three days each round every three weeks.

As Cookie attended school when she could, even cheered on Annie during her basketball game, kids at St. Jude cheered on Cookie by wearing “One Tough Cookie” bracelets anonymously donated to each student.

Gestures big and small began coming from school, church and the community – a second bracelet began circulating with the words, “Strong Like Bull – Team Cookie,” meals were prepared, and Make A Wish granted the family a trip.

A Pet/CT scan in the first week of November showed the cancer was responding to the first three rounds of chemo. Cookie needed three more rounds, but her oncologist encouraged the family to take the Wish trip while she felt well.

“Make A Wish provided us with an amazing opportunity to spend Thanksgiving in San Diego, and that was just, I would say of our experience through this whole thing, really one of the highlights of us coming together as a family and just really enjoying quality time with each other,” Dan said of their stay at Hotel Del Coronado, equipped with a rental car and free passes to SeaWorld and San Diego Zoo.

Linda said the timing couldn’t have been more perfect.

“Now we look back and we’re so glad we did because we still have some fragile moments,” she said.

‘Feels good to feel hope’

By January, Cookie’s PET/CT scan showed they had control of the cancer and could begin the conditioning phase for the transplant.

“I know this is the power of prayer,” Linda wrote in Cookie’s online CaringBridge journal. “As our family prayed together, while rubbing holy water on Cookie’s legs the night before the scan – holy water all the way from Lourdes, France … a feeling came over me. It feels good to feel HOPE!!! Please keep the prayers coming!”

On their way to the hospital, Linda noticed a green ribbon tied to the light post at the end of their driveway.

“Then we looked around and there were green ribbons on a couple of the trees in the neighborhood, and as we drove out, there’s green ribbons and we’re like what’s with the green ribbons?…” Linda recalled. “We came to learn that they were to show support for Cookie and while she was in the hospital for those 45 days, the green ribbons grew, and grew, and grew, and grew.”

Support poured in – people made meals, helped with rides, sent cards, posters, banners, pictures and artwork; Cookie’s basketball team ordered warm-up T-shirts with her picture on the back – which were donated when the owner of the shop learned the story behind them.

St. Jude community is ‘secret sauce’

That support helped the Topps through their struggles.

“In addition to our faith, I think the other secret sauce to our survival has been our faith community, our St. Jude community,” Linda said. “That, where we live and where we pray and go to school … (it has) completely surrounded us at some very difficult times and been beautifully supportive.”

Catherine LaDien, principal of St. Jude the Apostle School, said everyone wants to help the Topps.

“They are an easy family to love,” she said. “You really want to support them because they respond so beautifully and they always were that way before they needed people – they were there for other people, so it’s now their turn to be the recipients of some of that love and support.”

Whether Dan was grilling at an event or he and Linda were leading a fundraiser, they were involved in the school and parish.

“It’s been hard for them with their daughter Claire and all of her needs, and still they found the time to be huge community leaders for us, both on an informal and formal level,” said LaDien, a school parent, teacher and administrator before becoming principal at St. Jude about 10 years ago.

“I remember (Dan) said to me, ‘I had no idea that Claire was going to be the warm-up act for something big like this,’ and that was just so telling of their family, and I think that’s part of how through Claire and her innocence and sweetness everyone rallied around the family with all of her concerns, health issues and everything, and I think people got to know them a little bit more on the radar, not because they wanted to be, but just by the nature of everything, and they’ve always been so appreciative.”

Students lift her spirits

Cookie tried to blend in at school, before and after her diagnosis, but students, faculty and teachers tried to lift her spirits by doing little things that made her stand out – like giving her diamond studs when her head was shaved, LaDien said.

“I know that sounds a little bit much for a young lady, but when you get your head shaved and you’re not feeling as perky, it was great to have a little bling. … It was kind of a fun little gift that we gave her, and other things, too,” LaDien said, adding fun pajamas and an automatic jelly bean dispenser to the list of gifts they sent at least once a month to perk her up.

When Cookie was in isolation, the kids sent a banner for her room with a signature or finger print – something – from everyone at the school “just to surround her with love,” LaDien said.

“I think it’s just trying to make a challenging situation as bearable and possible as you can,” she said.

Cookie stayed strong through her progress and setbacks, according to LaDien.

“She always found the strength really from her family, from her faith, from close friends and just who she is, just who that young lady is – she is just marvelous,” she said.

Attends class from hospital bed

Cookie missed the second semester of school, and spent the summer catching up, thanks to study guides the teachers compiled, but she already gets an “A” in religion, LaDien said.

“She typifies what it means to be, to have faith in this time of when you could really feel sorry for yourself or get down and question things,” she said.

Cookie’s situation has been educational for the other children, too, LaDien said. They learned about cancer, empathy, and even technology with VGo, a robotic video conferencing unit that allowed Cookie to attend school from her hospital bed – thanks to the owners of the company where Dan works.

Cookie used a laptop to “drive” the wireless robot, complete with a video camera and monitor about the size of an iPad, around the school, according to Dan.

“She wasn’t able to attend a high amount of class, but when she could it was super effective for being able to interact with her friends,” he said.

The kids were excited to “see” Cookie at school through the robot that rolled around the hallways wearing the school theme shirt that said “Let your light shine.”

“It was really funny. …” Linda said. “On Cookie’s laptop, we could see the class, she could see the whole class and they could see her, and so when Cookie’s face came into their light, you could see all of them go, ‘Cookie!’ and just erupt.”

LaDien said the robot was nice for academics but also for socialization.

“Keeping connected when you’re in isolation like that is so enormous – the impact of how that makes you feel day to day,” she said, “and (she) could almost like have lunch with the kids because she could be with them and communicating instantly.”

DSHA community supportive

Students at Annie’s school, Divine Savior Holy Angels High School, also showed support by pinning green ribbons to their uniforms.

“And the varsity soccer team at DSHA dedicated the season to Cookie, and at every game they did something ­— like they had her initials or wore green,” Dan said.

They also wore green pre-wrap headbands and “Play for Cookie” written on their arms, Annie said.

And not to mention the neighborhood kids who left little bags or envelopes with coins from their lemonade and fruit punch sales for the family.

“There were constant people just doing, just very quietly and subtly and mostly anonymously, and just doing really nice things like this and keeping her in their thoughts and prayers,” Dan said.

Green ribbons and a human parade of the St. Jude community and entire school, holding signs and clapping, lined Cookie’s path home from Children’s Hospital when she was released in March.

“It was such a great gesture of support,” Linda said.

Cookie has had setbacks that landed her in the hospital a couple of times since, but they haven’t kept her down, Linda said.

“She’s been very, very sick at times, but she just has remained so positive and so strong and never once has uttered a complaint or a ‘Why me?’” said Linda.

Cookie, back at St. Jude as an eighth-grader this year, is in remission.

She rang the bell in the MACC Cancer Clinic at Children’s Hospital at the end of August, signifying the end of her treatment, Linda wrote in the CaringBridge journal dated Sept. 2. Linda explained that even in remission Cookie will continue to see an oncologist twice a month for at least a year, and they’ll all be watching closely for changes in her skin.

Family strongly carries crosses

The Topps don’t know what the future holds, but they know they have faith, each other and a community surrounding them with love.

“We’ve learned over time to appreciate that we can control what we can control and there’s a lot that’s beyond our control that you have to just pray about and offer up and kind of see what will happen,” Dan said.

Fr. Charles Conley, pastor at St. Jude the Apostle Parish, said the family has been strong as they’ve carried their crosses – first with Claire and now Cookie.

“It just makes you think sometimes how many crosses should any one given family or individual face?” said Fr. Conley, who celebrated the sacrament of the sick for Cookie shortly before the transplant. “But they’ve been so brave and strong, and the support system of the parish is – I just stand in awe at the tremendous support of love and prayer.”