Sunnier days for Sophia

By on October 12, 2016

Leukemia-stricken Ephrata baby set for Nov. 1 bone marrow transplant

Rick and Amanda Wagner with five-month-old daughter Sophia are  home from an almost three-month stay at CHOP.

Rick and Amanda Wagner with five-month-old daughter Sophia are home from an almost three-month stay at CHOP.

Rick and Amanda Wagner moved into their home in Ephrata in July.

Just two weeks later, before all the boxes were unpacked, they learned their 12-week-old baby, Sophia, had acute lymphoblastic leukemia.

“Our world just turned upside down,” said Amanda.

“You’re almost in your own little world, like you’re living in this bubble while the world is going on around you,” said Rick.

“We had a really fussy weekend with her to the point where we decided to make an appointment with the pediatrician,” said Amanda.

They initially thought Sophia had an ear infection.

“She literally had no signs and then it spiraled from there,” Rick said.

“They (Red Rose Pediatrics) felt her spleen and sent an ambulance to the pediatrics office,” said Amanda, who was at the doctor visit by herself.

“They wanted her to get oxygen now,” recalled Amanda. “I was getting nervous and asked what it was and the pediatrician said straight up to me: ‘I think it’s leukemia.’

“We were actually, I wouldn’t say mad at the pediatrician, but we were wondering why they would say something so serious — the worst-case scenario off the bat. Why would they get us worked up if it’s not?”

“If they (Dr. Melissa Tribuzio) had passed it off as something else or not acted right away, it would have gotten much worse,” said Rick.

As a result, Sophia has no organ damage because it was caught early.

Sophia went from Red Rose Pediatrics by ambulance to Lancaster General Hospital.

“As soon as they got the results back from the blood, they called a helicopter to go to Children’s Hospital of Philadelphia,” said Rick. “By midnight, they were already doing blood transfusions on her.”

“The blood count level, for a 12-week-old baby should be 10,000 white-blood cells, and she had 676,000.

“The hardest thing to do was to hand her over, because she was balling, to the helicopter. They put her in a little box, and we weren’t allowed to go in with her.”

Amanda works for the Lancaster-Lebanon IU13 and is now on unpaid medical leave.

She was at CHOP for 43 straight days. The couple gave up their room at the Ronald McDonald House to spend more time with their baby and rarely left her “by herself.” Rick slept on the floor in the intensive care unit.

“She had a breathing tube in and she would cry but no sound would come out and we couldn’t pick her up,” said Rick of the first few weeks. “We’d pat her chest.

“Right now, she’s cancer-free. But she has to have a bone marrow transplant or her marrow will keep producing leukemic cells.”

“It’s basically like stem cell transplant,” said Amanda. “We have five matches, but we are not allowed to know the name of the donor.”

The Wagners aren’t interested in profiting from their daughter’s cancer and turn down money when it’s handed to them. They are interested in cancer awareness and what people can do to help such as become a bone marrow donor.

“You can go to a site called “Be the Match” and they send you a swap kit. All you do is take a Q-Tip and swap it in your mouth and send it back,” said Rick.

Rick is the executive director at the Sinking Spring YMCA. His co-workers insisted on doing a fundraiser for them. They raised $5,000 in the campaign led by Josh Bushkie.

Rick said his boss, Kim Johnson who is based at the Reading YMCA, gave him “ultimate flexibility” with his position so he could spend time at CHOP.

The bone marrow transplant process begins on Nov. 1 Until then, the family can take a breather and finally unpack boxes and take in all that has happened.

“They don’t know why this happened. This form of cancer, it’s not genetic, it’s not anything we did,” said Rick.

The Wagners are looking forward to the marrow transplant.

“They actually call it ‘Day Zero’ and people consider it a second birthday,” Rick said.

Sophia is strong enough to be at home. They want to keep her healthy, which means monitoring visitors.

“We have to have this awkward conversation with people, like are you sick, can you wash your hands?” said Rick.

The experience has made them re-evalute their perspectives on the trials of everyday life.

“What we see now is people complaining about little things, like traffic, and we just look at each other and say: ‘Really?’” said Rick. “Our daughter is on breathing tubes, we’ll trade you spots. We’re trying to grasp on to as much positivity as we can.”

The Wagners are trying a “don’t worry until you have to worry” approach to the future.

“The one-day-at-a-time thing was hard at first, but it gets a little easier as you go,” he said.

The Wagners have a page on facebook called Sophia Strong and also a GoFundMe set up by a family member.

 

Michele Walter Fry welcomes your comments at michelewalterfry@gmail.com.

One Comment

  1. Kim Grabusky

    October 12, 2016 at 8:54 pm

    There is a facebook page called Sophia Strong that I set up, you can ask to join the page and get updates on her progress and see many positive comments from family, friends and strangers. Bible verses, prayers and well wishes, pictures and videos. Just go to Sophia Strong and click join.

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