alsac-patient-colin

Colin (center) with Dad and Mom

 

Colin
2 years old
Ependymoma

In June 2009, on the day Colin was due to celebrate his second birthday with extended family, his little legs collapsed beneath him when his mother tried to wake him up from bed.

For Tamiko, reliving that morning is like reliving a nightmare.

"I said to Colin, 'You can't stand,' and then I held him. His legs didn’t work. His back was arching. He looked so scared."

The day before, Colin had been running with his older brother and eating ice cream. Now he couldn't move.

Colin was rushed to the emergency room, where scans revealed the presence of a large tumor in the forth ventricle of his brain, an area that controls some of the body's most basic functions. It was an ependymoma, a malignant tumor that makes up approximately 6 percent of brain tumors in children. Within days, Colin endured two surgeries—one to remove fluid build up and some tumor growth, and the second to remove the bulk of the tumor.

Tamiko does analysis and writing for a financial publication in Manhattan. She felt frightened for her son, but rather than panic, she and her husband did their research, weighing a number of factors, including survival rate and quality of life, to find what they felt was the very best place for their son's ongoing care. "We combed the planet for a treatment plan that made sense for our son," said Colin's father, Ian. "At the very minimum, we hoped it would buy us some time."

That search led them to St. Jude Children's Research Hospital.

Colin and his mother traveled to St. Jude by air ambulance. From the moment they arrived, Tamiko felt she could finally breathe again.

"It comes down to hope," said Tamiko. "I had a feeling we were in the right place. It was tremendous for me."

Ian and Colin's brother, Aidan, were able to join them soon afterward, and they've been living together ever since at Target House.

At St. Jude, Colin received chemotherapy through a research trial for children under 3 years old with brain tumors. This month, he had another surgery to remove a tumor remnant. This additional surgery—and the success of it—has dramatically improved Colin's prognosis. Colin is recovering well, and soon he'll begin radiation therapy.

Along the way, Colin's treatment plan has been tailored to his complex needs.

"They way the doctors and nurses at St. Jude touch each child's life, it's different for every family, but it's incredibly meaningful," said Tamiko.

What impresses the family about St. Jude is how the hospital focuses on their son as a unique child with individual needs, rather than as a statistic. As treatment goes along and the course of the disease changes, St. Jude will alter its treatment plan accordingly, so they're always giving Colin exactly what he needs, when he needs it.

Tamiko and Ian are already seeing the benefits of this approach. "The good technology and good imaging at St. Jude has had everything to do with his successful trajectory," said Ian. "All of these things have made the difference in his care."

At St. Jude, Colin's condition has improved considerably. He's talking and joking around again, and sometimes even complaining. For a family that has watched their son paralyzed for weeks, even the complaints are music to their ears.

"He's finally coming back," said Tamiko.

Ian compares his son to the positive and persistent title character from the Little Engine That Could. This strength of character is important because Colin has a long way to go. He is still overcoming his right-side weakness and his long-term outcome is still uncertain. But Colin gives his parents hope, and so do the doctors.

"Children live in the moment, and it's the greatest reminder to us as parents and human beings," said Tamiko. "He moves forward, he sees beyond the negativity of this diagnosis, and it's just such an inspiration."

Each morning, Ian sees the researchers grab their coffees before heading toward the Danny Thomas Research Center. This is immensely reassuring to him. He knows that findings in the St. Jude lab have the potential to increase Colin's chances of long-term survival.

"This institution is one that does what it says it will do," said Tamiko. "It has a tremendous track record."

 

February 2010