November 30, 2004 – December 16, 2006

“She loved the color pink, dancing and playing with her big brother Grant.”
– Friend of Paige and St. Jude Runner, Bridget Hamann.

“I’m not in control any more,” Rhonda said. “God is bigger than the doctors and nurses and machines and medications. Now it’s time for me to hand it over to Him.”

Since January, the Quincy couple’s 23-month-old daughter, Paige, has bravely battled a malignant brain tumor that has robbed her of her sight and her ability to talk, walk or even crawl.

Paige has endured a dozen surgeries and two rounds of chemotherapy.
Nothing has worked.

About four weeks ago, Paige’s doctor at St. Louis Children’s Hospital told Rhonda and Eric there was nothing more that could be done, and that Paige should be taken home and made as comfortable as possible.

“He told us she had days, weeks, months to be with us,” Rhonda said.

While still praying for a miracle, they know their time with Paige is limited and they are making the most of every moment.

“We still can’t believe this is actually happening,” Eric said. “But we’re lucky to have had her since January. She was so critical then. We had a lot of good times with her this year.”

The Jameses moved to Quincy in January from Elkhart, Ind., so Eric could take a position at Knapheide Manufacturing. A week after the move, Paige got sick.

“Her eyes were dilated. She was vomiting and was real lethargic. She was not wanting to walk,” Rhonda said. “As a mother, you know when something’s wrong.”

After tests at Quincy Medical Group, Blessing Hospital and St. Louis Children’s Hospital, the family was told Paige had a mass and fluid on her brain.

It was Jan. 16, and Paige was just 13 months old.

A biopsy revealed the mass was a malignant brain tumor pressing on her brain stem and optic nerve. In February, about 70 percent of the tumor was removed and she received chemotherapy treatments for two months.

After the chemotherapy, an MRI revealed the tumor had grown back.

“Then we started a different chemotherapy protocol,” Eric said. After 12 weeks, another MRI was performed. This time, the news was good so the chemotherapy protocol continued for another 12 weeks.

But the family’s roller-coaster ride wasn’t about to end. The tumor had grown back and was starting to spread.

More surgeries took place, and one in particular caused a major setback for Paige. She was in the intensive care unit for three and a half weeks – compared to just 20 hours after her first surgery.

After five weeks in the hospital, Paige’s doctor shared news that broke her parents’ hearts. The tumor had doubled in size and there was nothing else he could do.

“Right now the plan is to make her as comfortable as we can, to love on her and to cherish every moment we can with her,” Rhonda said. “We have enrolled in hospice. That was hard, but we know that’s what had to be
done.”

They hope they’ll be able to celebrate Paige’s second birthday on Nov. 30.

A few nights ago, Rhonda and Eric sat on their living room floor with their 4-year-old son Grant and little Paige, propped up with a big pillow. The blue-eyed toddler looked adorable in pink, with tiny green, yellow and blue
bracelets on her wrist and her fingernails painted bright pink.

“I like to paint her fingernails,” Rhonda said tenderly.

Grant smothered his baby sister with kisses, and Mom and Dad gently touched her face and kissed her.

“We just love on her. She gets hundreds and hundreds of kisses a day,” Rhonda said.

Paige, sadly, can’t respond the way she used to. She’s blind, and often gets frightened at any sudden movements. She can’t sit up on her own, can’t walk or talk. Medication makes her sleepy.

It’s tough on her parents, because they remember the active, independent child whose smile could light up a room.

“She was very happy, always smiling and singing,” Rhonda said. “She would always dance to the music. She used to run around the house, and she loved  being outside.”

But Eric and Rhonda don’t feel sorry for themselves, don’t ask, “Why us? Why Paige?”

Tears have flowed, certainly. But they somehow have found the strength to face each day as it comes and to accept the plan that God has for their “angel.”

“It’s not a choice,” Rhonda said. “She’ s my daughter, but she’s God’sdaughter, too.”

In addition to their strong faith, Eric says their friends and family, and even the outpouring of support from those they don’t know well, have given the family strength.

People from all across the country have been praying for Paige after seeing her story on a Web site, www.caringbridge.org. The site is a free online service designed to keep friends and family of the seriously ill updated on developments. Each patient has his or her own unique site with journals, photographs and a guestbook.

Paige’s personal site has received more than 18,000 hits, and more than 900 messages – even from strangers.

“It helps seeing all the people who get on the Web site, to see how many lives Paige has touched,” Eric said.

Rhonda says she’s also been touched by the kindness of Quincyans, including a “guardian angel,” Mary Bockenfeld; members of the Crossing church and Eric’s co-workers at Knapheide who have provided daily meals for the family; and Randy and Gerilynn Malone who are organizing a benefit for Paige on Sunday.

“We are so blessed to be in Quincy. I believe God brought us here for so many reasons,” Rhonda said.

Rhonda and Eric also are amazed with Paige.

“She has got to be the strongest child on this earth for going through all the things she’s gone through,” Rhonda said. “She’s definitely our angel. She’s definitely loved.”

Brian Blakley misses his son.

“I miss his wittiness, the things he’d say. I miss playing sports with him, just being around him,” Blakley says, then pauses and drops his head. “I miss everything about him, really.”

Dalton died June 27 at the age of 13. He had been battling a form of cancer, neuroblastoma, for more than a year. The loss has been agonizing for Blakley, his family, friends and members of the Astoria community where Dalton lived, played baseball and excelled in school.

Yet, through the sadness, Blakley possesses a strength and a drive to ensure that Dalton’s memory lives on. He also wants to draw attention to St. Jude Children’s Research Hospital, where Dalton spent much of the final year of his life.

“The people at St. Jude became his secondary family,” Blakley said. “It’s just a really important place. At St. Jude, they’re driven by saving children’s lives and finding a cure for cancer.”

Blakley already was familiar with St. Jude because his 16-year-old son Brody was diagnosed with a type of liver cancer when he was a 1-year-old. “St. Jude saved his life,” he said.

Because of that, and because of how the hospital cared for Dalton, Blakley wants to give back. He will come to Quincy on Friday to participate in the St. Jude Quincy to Peoria Run.

The Astoria man who works at Dot Foods in Mount Sterling is one of nearly 60 area runners and volunteers who will raise awareness — and money — for the hospital in Memphis, Tenn., and its Midwest Affiliate in Peoria.

The runners begin their journey at 5:30 p.m. Friday at County Market, 30th and Broadway, and continue relay-style for 135 miles until about 4 p.m. Saturday when they reach the Civic Center in Peoria, where they will join runners from Memphis and 17 other running groups for the annual St. Jude Telethon.

“The runners are already motivated. But maybe I can offer some inspiration to push a little harder,” Blakley said. “I will run when I can. Mainly, I will be talking to runners, going from motor home to motor home telling Dalton’s and Brody’s stories.”

A poignant moment on the trip is sure to be a stop in Dalton’s hometown of Astoria at about 5:30 a.m. Saturday. Community members are planning to greet the runners and treat them to pastries, water and other goodies. It was at the Astoria stop during the 2006 run when the Quincy contingent first learned about Dalton. He had been diagnosed with neuroblastoma just 10 weeks earlier, on May 25.

Neuroblastoma is a cancer that forms in the peripheral nervous tissue. Blakley says he noticed Dalton was more tired than usual and decided to take him to the doctor. A tumor the size of a softball was discovered under his left adrenal gland. He was transferred to a Peoria hospital and then to St. Jude in Memphis. The neuroblastoma already was a Stage 4, or a late stage, cancer.

Dalton went through a couple of weeks of chemotherapy, then had an operation July 11, in which 99 percent of the tumor was removed. That was followed with more than 30 weeks of chemotherapy. Treatments took place at both the Memphis and Peoria sites. St. Jude then sent Dalton to Cincinnati Children’s Hospital in Cincinnati, Ohio, for an experimental treatment called MIBG.

MIBG (Meta-Iodo-Benzyl-Guanidine) is a chemical attached to radioactive iodine, which is injected to attack the neuroblastoma cells. A stem cell transplant was planned for March, but then doctors discovered Dalton had veno-occlusive disease as a result of chemotherapy. The disease causes a blockage of small veins in the liver.

“We were waiting on a drug from Italy (to treat the VOD). It’s not available in the U.S. I’m not sure why, and something needs to be done about it,” Blakley said.

The drug arrived on the day that Dalton died. “He was extremely tough,” Blakley said of how well his son handled being sick. “He was smiling right up to the end. He made it a lot easier on all of us. His strength and perseverance, he made it so we could cope.” Dalton’s strength continues to inspire Blakley and Dalton’s mom, Pamela, who lives in Peoria. Yet, their grief is heavy.

“We get out of bed every morning and go on. But we feel a little cheated, too,” Blakley said. “Neuroblastoma is a terrible cancer and we need to strive harder to find a cure.”

Because of the research done at St. Jude since its founding in 1962, five-year survival rates have increased dramatically for many pediatric cancers. For example, the survival rate for acute lymphoblastic leukemia jumped from 4 percent in 1962 to 94 percent today.

Because of the research done at St. Jude since its founding in 1962, five-year survival rates have increased dramatically for many pediatric cancers. For example, the survival rate for acute lymphoblastic leukemia jumped from 4 percent in 1962 to 94 percent today.

Six other common pediatric cancers now have five-year survival rates above 85 percent. Yet for neuroblastoma, it’s 55 percent. Blakley says that’s why the St. Jude Run is so important, to help fund research to find better treatments and cures.

“Hopefully some good can come out of Dalton’s death and we can save other children,” he said.
Blakley also emphasizes that it takes more than $1.2 million to operate the hospital each day, and most of that comes from donations.

St. Jude, founded by the late entertainer Danny Thomas, is the only pediatric cancer research center where families never pay for treatments that are not covered by insurance, and families without insurance are never asked to pay. St. Jude also helps with lodging, food and travel for patients and families. “It’s like a security blanket,” Blakley said, describing the care shown to both the children and their families. St. Jude treats the children to a variety of activities and experiences to help take their mind off their treatments, if only for a short while. Dalton had the chance to meet Zakk Wylde, guitarist for Ozzy Osbourne, and actress Anne Hathaway. He went to a Memphis Grizzlies game and got a ride in a NASCAR race car.

“Dalton held St. Jude close to his heart,” he added. “He would be happy with what we’re doing.”

To donate to the St. Jude Quincy to Peoria Run, call run coordinator Rick Meehan at (217) 779-2358.

By Kelly Wilson
Herald-Whig Staff Writer

About two months ago, 11-year-old Nick Austin thought he was battling late-stage Hodgkin lymphoma, with his chance of survival at 60 to 80 percent.

But the Brown County boy got some good news when his parents took him to St. Jude Children’s Research Hospital in Memphis, Tenn., for a second opinion.

“At St. Jude, they were just tremendous. They were very thorough,” said Nick’s dad, Andy Austin, who lives near Timewell but is a member of the Quincy Rotary Club.

Surgery revealed that Nick’s cancer had not spread to his lung, as was suspected, and he learned that his disease was a low-stage cancer, a stage 2 instead of a stage 4, which meant his chance for survival jumped to 95 percent. “That was a much better prognosis,” Andy said.

Nick has been enrolled in a research study at St. Jude to test newer risk-adapted therapies to determine if it is possible to reduce the amount of treatment, which should reduce the long-term side effects of heart and lung disease and second cancers, and still maintain cure rates.

“They’re trying to scale back the amount of chemotherapy and radiation to a degree that takes care of the cancer, but doesn’t leave (the patient) with long-term side effects,” Andy said.

Nick started chemotherapy at the St. Jude Midwest Affiliate in Peoria about six weeks ago. He goes there once a week, and the treatment takes three to four hours.  “That allows us to drive just under two hours rather than seven and a half to eight hours to go to Memphis,” Andy said. “It’s a very nice facility there, as well.”

After Nick finishes 16 weeks of chemotherapy in Peoria, he’ll return to Memphis to determine if radiation therapy is necessary. If so, he’ll get three weeks of treatment in Memphis.

“Hopefully that does the trick,” his dad said.

It’s been an emotional roller-coaster for Andy and Nick’s mom, Amy Austin, who lives near Mount Sterling. But they’ve had tremendous support from St. Jude, and they want to do what they can to support the hospital.  When the Austins found out about the St. Jude Quincy to Peoria Run, in which participants start in Quincy and run relay-style 135 miles to Peoria to raise money for St. Jude, they wanted to tell their story and encourage people to donate.

“St. Jude is a huge benefit to us. Anything we can do to benefit St. Jude, we want to do that,” Andy said.

St. Jude, founded in 1962 by entertainer Danny Thomas, is the first institution established for the sole purpose of conducting basic and clinical research and treatment into catastrophic childhood diseases, mainly cancer.

Since its founding, St. Jude has developed protocols that have helped push survival rates for childhood cancers from less than 20 percent to more than 70 percent overall. The survival rate for acute lymphoblastic leukemia, the most common form of childhood cancer, has gone from 4 percent to 94 percent.

The hospital freely shares its research with health-care facilities around the world.

In addition, St. Jude is the only pediatric cancer research center where families never pay for treatment not covered by insurance, and families without insurance are never asked to pay. The hospital also pays for lodging, food and travel for patients and their families.

“When we have to stay there, they have temporary housing, which is phenomenal,” Andy said. “That really helps, being right there on campus. The doctors and staff there are tremendous. When you go there, they’re taking care of not just Nick, but the whole family.”

Nick’s doctor, Dr. Monika Metzger, gave the family her cell phone number and even called while on a trip to Switzerland to find out how Nick was doing.

“If I ever have a question, all I have to do is call her cell phone,” Andy said. “They’re there for you.”

Andy also has been impressed by the fact that doctors and staff talk directly to Nick about his situation and involve him in treatment decisions.

“They’ll follow Nick for the rest of his life,” Andy added, and said that the trips to Memphis will be worth it because “this research is going to help other kids down the road.”

He knows that people are asked for money for various charities, but he hopes they’ll consider donating to St. Jude.

“With children, cancer is something they don’t deserve,” Andy said. “St. Jude is fighting for them, fighting to find cures to take care of them. St. Jude just does so much wonderful work, and they share what they learn with everyone. Everything they develop, they share with the rest of the world.”

Nick appreciates what St. Jude is doing for him.

“I think it’s really, really good for all the kids that go there,” said Nick, who will be a sixth-grader at Brown County Middle School in the fall. “They’re really good. They will get things done right, and they will make you better.”

By Kelly Wilson
Herald-Whig Staff Writer