Colleen Steele remains hopeful that her resilient son, Cullen, gains the strength to come home.

It won’t be in time for Thanksgiving, she says, but maybe for Christmas.

After receiving a heart and double-lung transplant three months ago, the Kent boy is slowly on the mend.

Cullen, who turns 15 on Nov. 17, suffers from pulmonary hypertension, a rare, debilitating lung disease that affects the functioning of the heart and can lead to failure. His deteriorating condition, a six-year battle, necessitated a last-hour surgery at Stanford University’s Lucile Packard Children’s Hospital in Palo Alto, Calif.

At 6 a.m. on Aug. 6, Colleen got the phone call she had long been waiting for. Doctors had finally found a donor.

She accompanied Cullen on the flight down to the San Francisco Bay Area, where the following morning, surgeons stood ready to perform a six-hour transplant operation to save the boy’s life.

Defying odds, Cullen pulled through.

“He was declining rapidly, and those life-saving organs didn’t come a moment too soon,” Colleen said of the excruciating ordeal. “The surgeon told me after the transplant that when they did the operation, his old heart and lungs were barely functioning. His old organs were wounded warriors.”

Cullen, ever the fighter, is now on the mend, but his recovery has been rough. His new organs are in “minor rejection,” which is normal in the first year of recovery, and anti-inflammation medications have caused seizures, migraines and other complications. But doctors are optimistic that Cullen will respond to treatment.

The transplant center, led by Stanford medicine faculty, is considered one of the nation’s finest, supporting some of the highest survival rates in the country for children.

“He’s had some bumps in the road, but he’s doing well. Basically, his doctors say he’s doing well,” Colleen said. “There’s a lot to be figured out, but there’s so much hope. I mean, they’re going to figure this out. It’s just going to take time.”

To be near her son, Colleen left her secretarial job at Auburn’s Holy Family Catholic School and rented a studio apartment not far from the transplant center. The hospital is picking up the costs.

As mom stands by her son’s side, the rest of the family is staying back, more than 800 miles away. Brian, Cullen’s father, is a senior systems administrator. Aidan, 13, Cullen’s brother, attends school.

Despite the long distance, the family has reunited at the hospital.

“(Aidan) has given up so much over the years and has worried without end about his brother,” Colleen said. “This journey has been very hard on him as well, yet he rarely complained. He’s an amazing young man, and Brian and I are so proud of his strength as well.”

Between treatments, Cullen tries to keep busy with books. He graduated from the eighth grade at Holy Family last spring but has spent his freshman year taking classes at a school in the hospital.

“They’ve been very understanding,” Colleen said of the instructors at Kennedy Catholic, Cullen’s high school. “They even have sent him care packages and encouragement. They are really looking forward to the day when he can finally walk through their doors.”

Communities at work

Given the high medical costs, the Steeles are doing their best to make ends meet. Family and friends from Auburn, Kent and surrounding communities have organized creative fundraising events.

Amy O’Donnell Riley and COTA (Children’s Organ Transplant Association) have been instrumental raising money to cover the cost of Cullen’s operation.

Colleen cannot thank the many supporters enough.

“We are fortunate to have amazing family and friends,” she said.

Colleen also is overwhelmed by the great gift of life that Cullen received from the donor and his family.

“We are so grateful to them, and our prayers are always with his family,” she said.

Colleen intends to write a letter and send a photo of Cullen to the donor’s family. By careful arrangement, families have the option to read each other’s letter. They also have the choice to meet in the future. Colleen is entertaining that probability.

For Colleen, it’s been a tough go, but even more so for her son.

“It’s been hard in a sense that a transplant really shouldn’t be the cure for PH (pulmonary hypertension). You’re really trading one disease for another,” said Colleen, pointing out that November is PH Awareness Month. “It’s been really hard watching Cullen struggle, which is to be expected. It’s hard seeing him in pain and watching him go through the process of recovery. … Knowing that a transplant is a roller-coaster ride in itself, he will always have challenges.”

Cullen’s plight has been an emotional experience, testing the resolve of the people around him.

“For a mom, the heartbreak never ends. It’s heart wrenching in many ways, but I also have so much hope for Cullen’s future,” Colleen said. “I try to take it a day at a time. I’ve learned to appreciate the small things. There’s no taking things for granted when you’re going through things like this.

“I look at Cullen now and, despite his current challenges, he looks so much healthier than he has in years,” Colleen said. “Day by day, he is getting stronger, and I can’t wait until he feels well enough to live life to its fullest. Every day I wake up and want to hug him and never let go because I’m so grateful he is still with me.”

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To learn more or help the Steele family, visit http://cota.donorpages.com/PatientOnlineDonation/COTAforCullenS

or www.caringbridge.org/visit/cullensteele.

To learn earn more about PH or to make a donation, visit www.PHAssociation.org.