Published: March 21, 2008 12:09 am            

Timmy's funds

Helps families of children with cancer

FAIRMONT — When Timothy Joseph Quigley was born on July 1, 2002, his parents Joe and Tara were ecstatic. With his older sister, Ally, now their family was complete.

Then in early 2004 he got sick ... really, really sick. It was far worse than anything doctors first thought.

In May 2004 he was diagnosed with a medulloblastoma, the most common malignant — and highly aggressive — brain tumor in children.

Timmy died that Dec. 3. He was only 29 months old.

“We wanted to do something to keep his memory going,” Joe said.

So they created Timmy’s Fund, which is dedicated to assisting families who are currently battling childhood cancer. All gifts and donations will be used to relieve the financial and emotional burdens of families of children who are undergoing treatment at WVU's Children’s Hospital.

Its monthly gift program provides families of pediatric cancer patients there with envelopes containing prepaid phone, gas and restaurant cards, and some cash.

“We started thinking about what had helped us the most when we were going through this,” Joe said.

He and Tara thought about the friends, family and even complete strangers from all across the country who had helped them out financially.

Although he and Tara both have good jobs, the nonmedical expenses were high.

“Not only was this emotionally devastating, but we would have been financially lost,” Joe said.

“There is no way we would have made it through that financially,” Tara said. “Now, you take someone who is already struggling or has a job that’s not as stable. I walked away from my job for a year. Just completely walked away. And they took me back with no questions. Most people cannot do that.”

They know that not every family has this kind of help.

“None of this money (from Timmy’s Fund) goes to research or the hospital. It all goes to the families to help outside medical expenses, like gas, food, hotels,” Joe said.

Some restaurants donate food. Some offer discount cards. They’ve bought prepaid hospital cafeteria cards and are working on getting meals donated from the cafeteria.

“Whatever we can do to help,” Joe said.

“I don’t know what your financial situation is, but this is going to be financially devastating for you,” Timmy’s oncologist had told them.

In addition to worrying about the child and the mounting medical bills, these families have to make sure the phone and the heat stay on at home, that they have enough money for gas, food and a hotel room. When your child is critically sick, you just don’t think about these things.

“This is emotionally devastating, let alone having to worry about how you’re gonna pay your phone bill,” Joe said.

“We didn’t even think about this,” Tara said, “but had all those people not stepped in, it would have been a huge concern.”

“We were very fortunate that from the day he was diagnosed, we spent every day together, all four of us,” Joe said. “Almost no other families were able to have both parents there at every treatment.”

What’s troubling them is that now there are more than 20 families with pediatric cancer patients who need their help.

At first, doctors thought Timmy had an ear infection because he was crying and “messing with his ears,” Joe said. They know now that was from pressure from the tumor. But when antibi-

otics didn’t help, an MRI testing for spinal meningitis revealed a buildup of fluid. He was transferred to Ruby Memorial Hospital and diagnosed that night.

This kind of tumor is curable with radiation, they were told.

“But Timmy was too young to receive the amount of radiation he’d have to receive to cure the cancer,” Tara said.

The tumor was removed and that June Timmy started four rounds of chemotherapy with a spinal tap and MRI after each round to make sure the cancer was gone. His prognosis was good.

“The first couple of weeks we were up there, we had high hopes that it was benign,” Joe said.

He was so sick from chemotherapy, he had to spend six weeks in the hospital. As tough as that was on him, experimental treatments at other hospitals “would be 10 times stronger,” Joe said the doctors told them.

“Even St. Jude’s said if he survived the treatment, and that was highly unlikely,” Tara said. “They were telling us we could try, but chances were pretty good he would not even survive.”

Then, in mid-October, cancer cells were found in his spinal fluid after the fourth round of chemo. Experimental treatments could possibly extend his life, but what would the quality be?

“We went from hope to no options,” Joe said. “They could give him a full dose of radiation to his brain and spinal column. That would cure the cancer but leave him in almost a vegetative state for the rest of his life.

“They left it up to us.”

That night, Joe and Tara didn’t even have to say a word.

“We are a very strong Christian family,” he said. “We knew it was time. We’d done everything we knew.”

Although toward the end Timmy was lethargic and slept most of the time, in photos he was a smiling little boy with twinkling eyes.

“He was just Timmy,” Joe said with a chuckle. “Fine and happy. And mischievous.

“Remember when we talked about the house in heaven God says he has for us?” Joe asked his daughter. “That means that Timmy has his very own house up there. He’s getting it ready. Tell us what he’s doing to it.”

“He’s wrecking his room,” she said with a wide, toothy grin.

“See this picture of him in the swing?” Joe asked, pointing to the “Timmy’s Fund” cover photo.

“He was very sick, but look at how happy he looked. From day one from being diagnosed up to the end, he was such a happy child. Every time you looked at him, even in his worst condition, that’s how he was, whether he was playing football with the balloons in his hospital room or even when taking chemotherapy.”

“After the fourth round of chemo, they did the MRI and he had no tumors anywhere,” Tara said. “The spinal tap found cancer cells in the spinal fluid. Spinal fluid runs to your brain. And that’s when the treatments stopped.”

That was mid-October. Ally’s birthday was just 10 days away. They still had her party.

“How could we not?” Joe asked. “It was hard enough. This was her best friend. It made it so hard for her.”

They brought their sick little boy home.

“Why bother doing this for another six months of him being sick? Let him feel good for at least a couple of months,” Joe said. “We called hospice in and he was home when he died.

“That’s how it quick it was. You hear about people diagnosed with cancer, and it can be years, even if it’s terminal. We just had months.”

In the midst of all of this was Ally, his older sister and best friend.

“She helps us do everything we do,” Joe said. “She puts together the gifts with us. She’ll forever grow up looking at these pictures of her brother ... the memories.

“She doesn’t remember a lot (from that time). We wanted to make sure she remembered him. We wanted to put a positive spin on it.

“We kind of did Timmy’s Fund in memory of him and for him. And for her.”

On the advice of Timmy’s oncologist, the Quigleys involved Ally in each of her little brother’s last days and beyond.

Using words the then-4-year-old could understand, they told her Timmy was sick with something much worse than just a cold or ear infection. And that was why people were paying so much attention to him.

Once they brought him home, they stopped saying things like “When Timmy gets better,” but they didn’t tell her he was going to die.

“We thought that would be confusing because we didn’t know how long it would be,” Tara said. “We decided to wait and explain later.”

They almost didn’t need to, Joe said.

“As he got sicker and sicker, she said, ‘I just don’t think he’s gonna get better.’ This was three days before he died.

“That was the hardest part for me, trying to make sure she was OK. So it wasn’t a shock to her when he died. She understood he wasn’t coming back.”

“We didn’t keep any of his toys,” Tara said, “more for her sake. We didn’t want those things in the house when he passed away. It was confusing enough for her. And to her, it felt like he moved and took all his stuff with him.

“When she’d find something of his, she’d get upset. A week after he died, she found a shirt.

“‘Timmy forgot his Lion King shirt,’ she said. ‘I guess God will have enough shirts for him.’”

“She surprised us at how well and how she understood it,” Joe said.

As they stand beside the family quilt made by her sister, Dawn Hammons, Tara made an announcement. They’re expecting a baby. Due date is Aug. 28.

“The more we work with these families, the more we see how necessary what we’re doing is,” he said. “There are programs but they have so many restrictions.”

The Quigleys have reconciled Timmy’s death with their faith.

“All things have a purpose, whether we understand them or not,” Joe said. “This put me to the test. It’s the worst possible thing you think could happen, but you have to find that strength. I couldn’t tell you that I understood why this had to happen. I could get mad, but you have to have faith.

“His name is attached to this forever and will help families not just in a financial way but also a spiritual way, leading people to feel this way.

“We had such an inner peace even before he died. We were OK with it. We knew we didn’t have to understand it now. Some day we will understand why.”

They haven’t met the families they’ve helped but hope to at a picnic this summer.

Timmy’s Fund netted $9,000 at a murder mystery dinner fundraiser in February. A “pretty major event” will happen in the fall, Joe said.

The fund is in the process of attaining nonprofit 5013c status, which will make it eligible for state and federal grants. But its main funding right now is through individual donations and corporate sponsorships.

“Even $20 a month will pay for someone’s hotel room or for gas,” Joe said. Packets can value from $60 up.

He recalled being asked, just months before Timmy got sick, why he donates to St. Jude’s Hospital. There was only one reason, he said.

“You never know. And if it does happen to you, you right now would never realize how many families right here are suffering from this. There was a community of families up there.

“You spend a day or two there, and if that’s not enough to convince you to help. ...”

For more information, visit timmysfund.org or call (304) 694-0497.

E-mail Debra Minor Wilson at dwilson@timeswv.com.

        

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