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How do you celebrate Mother's Day when it's the last one with your child?

Emotional and financial support for a family on their journey with childhood cancer

The congregation of Bay Leaf Baptist Church gathered for a special 'Night of Encouragement' for the Neill family, four months into their journey of treating their five-year-old Avery's inoperable brain stem tumor, known as DIPG.
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The congregation of Bay Leaf Baptist Church gathered for a special 'Night of Encouragement' for the Neill family, four months into their journey of treating their five-year-old Avery's inoperable brain stem tumor, known as DIPG.

Editor's note: Avery Ann Neill passed away on Sunday. Family members are asking everyone for patience as they "process this immense loss and grieve together," a Facebook post says.

Emily Neill has always had a bittersweet relationship with Mother’s Day.

When she was 11, her mom died around the holiday. Then she and her husband, Andy, struggled with infertility. Finally came the joy of having twin daughters, followed by a son.

This time last year, Emily didn’t have a critically ill child. And this time next year, she may only have two children who call her Mom.

So this Sunday, she wants to keep things low key.

“The last few Mother’s Days have been really special because we have the kids,” said Emily, who is 32. “There’s a lot of pressure knowing it’s the last Mother’s Day I’ll get to spend with Avery. The next ones will be tainted.”

Five-year-old Avery was diagnosed in December with an inoperable DIPG brain tumor. Children who have the disorder typically live nine to 12 months after they are diagnosed.

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Avery Neill, 5, waits to receive chemotherapy treatment at Duke Hospital for an incurable DIPG tumor growing on her brain stem. Children diagnosed with the disorder have an average prognosis of nine to 12 months. Casey Toth ctoth@newsobserver.com

Avery is undergoing an experimental chemotherapy regimen — a combination of four medications that has never been tried together before, tailored specifically for her tumor mutations. She visits Duke Hospital at least every other week. She’s also under the care of a team at Children’s National Medical Center in Washington, D.C., that specializes in the disorder.

The Raleigh family has been focused on making memories these past several months. They went to Disney World through Make-A-Wish Eastern North Carolina. Another planned trip to Florida was canceled when Avery became ill, and now she is in hospice care.

Avery can no longer walk unassisted, and she continues to have double vision. She’s irritable, too, and tired.

But the Neills maintain a new kind of normal, with bedtime rituals and special times for each child – twins Avery and Bekah and 3-year-old James.

On Tuesday evening, Andy packed his son’s preschool lunch for the following day: half a PB&J, a handful of Honey Nut Cheerios, Craisins and fruit snacks. Emily, who works as a neo-natal nurse at WakeMed, was talking on the phone to a friend whose child may have croup. Or it could be reflux.

From upstairs, Bekah yelled that she needed a Band-Aid that had been promised earlier, although she couldn’t remember which finger was injured.

The kids had a good day, Emily said, but they were tired.

“We aim to get them to bed between 7:30 and 8,” she said. “Andy hangs out with Bekah sometimes after Avery goes to sleep. She had some Daddy time tonight already.”

It can be tough in any marriage to carve out alone time, and it’s especially challenging for Emily and Andy, who works as an engineer for Hipp Engineering in Raleigh. His supervisors graciously allow him to leave by 5 p.m., and the Neills call the following 60 minutes or so the “witching hour.” The kids are usually worn out by then, especially Avery.

“Bedtime used to be a lot smoother,” Emily said, “but Avery’s anxiety peaks at bedtime.”

Emily usually crawls into her own bed around 9 to read books on her Kindle, while Andy watches sports or organizes Avery’s medical bills. The chemo treatment costs $30,000 a month, and while the family has health insurance, there are still out-of-pocket costs.

“We talk via text all day,” Emily said of her husband. “I don’t feel disconnected to him, but we haven’t been on a real date in a while. I’m just now realizing that Sunday is Mother’s Day.”

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Andy said his wife has always been so nurturing.

“The hard part now is that Avery needs a lot more attention,” he said. “And Bekah and James need attention too, but in a different way.”

Avery has always been a mommy’s girl, and is even more so these days. But Emily got to spend some time with just Bekah recently at Carowinds amusement park in Charlotte. Avery had gone too, but she had a reaction to medication and her father went to get her.

“Bekah kept saying, ‘Don’t make me leave,’ because we had to leave a trip to Destin, Florida, recently because Avery got sick,” Emily said. “Bekah desperately needed mommy time.”

Fundraiser

Avery’s happy places are at home with family and at church with friends, her mom said. She still attends Sunday school at Bay Leaf Baptist Church and took part in a children’s program every Wednesday until it wrapped up this past week.

Late last month, Bay Leaf hosted “A Night of Encouragement” for Avery and her family, a prayer service that was also a fundraiser. The church raised about $30,000 that night and is still accepting donations.

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Emily, left, and Andy Neill receive hugs from their congregation after a "Night of Encouragement" at Bay Leaf Baptist Church in Raleigh on Sunday, April 29. Casey Toth ctoth@newsobserver.com

“We were blown away by the amount of people who were there, and by the 16,000 people who have watched the live stream (of the service),” Emily said. “To know that many people are with us and behind us is wonderful and uplifting.”

During the event, Emily introduced the song “I Will Carry You.”

“We pray fervently that Avery will be healed here on Earth and that our time will not be limited, but we know that her journey here may be short,” she said. “When I think of the possibility of Avery losing this fight, I picture her fully healed, hand in hand with Jesus, no longer stumbling, no longer agitated, no longer in any pain. She can see and she can hear and God is revealing the mysteries of the heavens to her, and it is beautiful. This picture is a comfort to my soul and my heart. While I selfishly feel that no one could love her as I can, I know God can love her even better.

“I will carry her and God will carry me, until it is time for Him to carry her for me — whether that time be soon or many, many years down the road.”

Hospice care

A couple of weeks ago, the Neills thought Avery’s tumor had grown. Her breathing had quickened, but doctors decided it was likely due to a stomach bug.

After much prayer, the family decided that if the tumor had grown, they would stop treatment and start hospice care. When tests showed the tumor was stable, they opted to continue treatment and enroll in hospice. Now a nurse visits once a week.

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Emily Neill, 31, settles in with her daughter, Avery, at Duke Hospital. Casey Toth ctoth@newsobserver.com

The family isn’t giving up on the possibility that Avery could beat this.

“We’re hopeful for a miracle, but we’re not expecting one,” Emily said. “It’s important to be realistic.”

She added, “It’s jarring to realize we are at this point, but it’s comforting to have these (medical) supplies here. We have everything in place so we can avoid as much hospital time as possible, which is our goal.”

The goal, too, is to make every day count – including Mother’s Day. They plan to go to church Sunday, have lunch with family and enjoy being with one another.

“We just want to stay around our family and not make today a big deal,” Emily said.

Susan Shinn Turner is a correspondent for The News & Observer.

How to help

To donate money to help cover Avery’s medical expenses, go to bayleaf.org/braveryforavery.

Or checks can be made payable to Bay Leaf Baptist Church with “Avery” in the memo line. Mail them to 12200 Bayleaf Church Road, Raleigh, NC 27614.

You can read updates about Avery on the Bravery for Avery Facebook group, which has more than 50,000 members.

The Neill family recently received a diagnosis for their five-year-old daughter Avery that has changed the course of their lives. Avery's twin sister Rebekah and their little brother James struggle to understand the 'boo boo' in Avery's head.

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