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Speaking from the heart

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By Claudia Hankin Balluff

While it is common for some kids to dread going to school, Paige Lindner wishes nothing more than to join her classmates on a daily basis, permanently. The routine that plays out Monday through Friday for her peers has not been the case for a young girl whose immune system was too compromised to risk exposure to that many children. Instead of frequenting classrooms, she has become far too familiar with hospital rooms.

When Paige was just 3 years old, her parents Jake and Mindy Lindner brought Paige to the doctor, as she was experiencing pain in her feet. When her parents heard that the diagnosis was acute lymphoblastic leukemia (ALL), their first reaction was sheer terror. Mindy and Jake have since learned to negotiate the world of hospital stays and cancer treatments and have become fierce advocates for their child.

Paige managed to fight off ALL after 2½ years of treatment, only to have it come back when she was 6, and again last year when she was 9. Throughout her years of battling cancer, doctors have been unable to find a viable bone marrow match for Paige. Her doctors began to explore other treatments, like stem cells from umbilical cord blood, which require less precise donor-patient matching criteria. Unfortunately, her local hospital in Omaha does not perform umbilical cord blood transplants. Once an umbilical cord blood match was found, Paige was transferred to the University of Minnesota Children’s Hospital. The doctors at the University of Minnesota have performed more umbilical cord blood transplants than anywhere in the world, so Mindy and Jake knew Paige had the best team of doctors possible. On June 22, 2009, Dr. Michael Burke performed the transplant on Paige. During some of Paige’s post-transplant hospital stays, Jake would stay in Omaha to work and take care of their younger daughter, Neenah, and Mindy came to Minneapolis to be with Paige. Though for 10 weekends, Jake and Neenah would travel from Omaha to Minneapolis so the family could spend time together.

Mindy learned quickly to speak up on behalf of her daughter. “You know your kids. We know how she reacts to things best,” she says.

Last summer Mindy’s advocacy may have saved her daughter’s life. Paige had been complaining of abdominal pain, but since this is a common side-effect of the chemotherapy, her doctors weren’t alarmed. She happened to be scheduled for a CAT scan on her upper body that day, and Mindy, knowing that Paige had a history of kidney stones, asked the doctors to look at her abdomen as well. It turned out Paige had appendicitis. Worse yet, they couldn’t perform surgery on her as it was too soon after her transplant was performed and would be too risky of a procedure. The only option her doctors had was to place her on several antibiotics and pain medicine for her severe pain and hope for the best. After two nail-biting weeks, Paige kicked it; the swelling went down, and her appendix reverted to normal.

Speaking up is one thing, but Mindy is very thankful that they were at a facility that always listens to what the parents have to say.

“They’d adjust to what we said, do more testing or look into it, if we asked,” says Mindy. “They never pooh-poohed your thoughts; they always took what you had to say as good medicine.”

Mindy is not the only family member who knows how to speak her mind. One thing that’s brought Paige joy during her long hospital stays are her Beads of Courage necklaces. The Beads of Courage program started in Arizona but has now spread all over the world, and was brought to the University of Minnesota Children’s Hospital through Children’s Cancer Research Fund’s Care Partners program. Children undergoing treatment for cancer or other serious diseases are given specific beads every time they receive a certain therapy or procedure. They then string these beads into a necklace, which visually represents all of their treatment milestones and helps the patients tell their story to their friends and family. Paige started her first necklace (she has four) while in Minnesota, but when she returned to Omaha, she found out that the local hospital didn’t offer the program. Instead of merely expressing disappointment, Paige took action, showing her necklace to patient advocates and doctors at the hospital and sharing with them what the program meant to her. Thanks to her efforts, the Children’s Hospital of Omaha will soon have Beads of Courage for their patients as well.

Naturally, Paige has appeared physically different from other children her age, with a stint of hair loss from her chemo treatment, although that never dampened her dimpled smile. The most significant difference was inside, with an unusual marker on one of her chromosomes. At first her doctors took it to be the Philadelphia Chromosome, which is an abnormality involving a piece of chromosome 9 and chromosome 22 that causes chronic myeloid leukemia (CML) and is also found in one form of very high risk ALL. They soon realized that although it was very similar, it was not the Philadelphia Chromosome but rather a piece of chromosome 9 that was abnormally amplified in Paige’s leukemia cells and the likely reason her cancer kept recurring.

But despite all her adversity, Paige is still very much like her peers. For instance, she loves movies. While staying at the Ronald McDonald House in Minnesota, it was a nightly treat for Paige and her mother to watch movies after a day of chemo or tests. Paige was particularly hooked on the teenage mermaid movie, Aquamarine. She also made friends her age while in treatment, something she otherwise hasn’t had the opportunity to do.

For now, Paige is back at home and doing well. She’s gained weight, and she’s reacting well to her current treatment with a medicine called Gleevec, that specifically targets and kills leukemia cells that have Paige’s chromosome mutation just as it does for patients with CML. This piece of the puzzle is just one more step that brings Paige closer to her dreams for the future: becoming a doctor, having three kids and lots of pets.

Paige is also back into the swing of school after missing the first several months of 5th grade. Her classmates at Ponca Elementary warmly welcomed her back full time on February 8, 2010.

“It is exciting, nerve racking and exhausting for Paige, but it is part of getting back to whatever ‘normal’ is,” says Mindy. “Like everything she has gone through, Paige will push on with all she’s got to make it work. Paige is our HERO!”

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