Love and hope in the face of devastating illness
PATRICIA A. MILLER Ocean View

At first, Avery Lubrecht's parents thought their 4-year-old daughter had a stubborn stomach flu. The little girl had been vomiting and suffering from headaches off and on for several weeks. Her pediatrician said she was dehydrated and sent them to Community Medical Center's emergency room for intravenous fluids. Avery's eyes were slightly crossed. The ER doctor ordered a CAT scan, just to be on the safe side

And the Lubrechts' lives changed forever.

Avery didn't have a stomach virus. What she had was worse, much worse. She had a tumor on her brain stem.

There is a heartbreaking picture of Avery lying on a gurney, as two paramedics prepare to transport her to the pediatric intensive care unit of Children's Hospital of Philadelphia. Her Tiger Bear and another stuffed animal are strapped in with her.

Avery needed surgery as soon as possible, as soon as doctors could reduce the swelling on her brain. They gave the Lubrechts three possible outcomes: a noncancerous tumor that could be removed, a cancerous but contained tumor that could be excised, or a tumor that had metastasized down her spine.

"All three options are unthinkable to me," Stacey Lubrecht wrote at 4 a.m. on April 30.

It was the first of her daily messages on Carepages.com, the Web site Children's Hospital maintains so family and friends can stay connected and updated on a patient's condition.

Stacey Lubrecht's posts take the reader on a journey to a place where no parent wants to go — to the nether world of childhood cancer and chemotherapy, of bone scans, spinal taps and vicious side effects.

"I'm also starting to get desensitized to the diagnosis and coordinating vocabulary," she wrote on May 12. "I can answer doctors' questions by saying 'she is 10 days post-resection' and actually know what that means. I can say 'cancer' and 'my daughter' in the same sentence and not fall apart crying."

Avery's two-hour operation left her with a 6-inch vertical incision running from the back of her neck up her skull. Doctors removed as much of the tumor as they could and scheduled her for chemotherapy.

The past 12 weeks have been filled with posts detailing side effects, chemotherapy, fevers, infections and a little girl still trying to have a semblance of a normal life. Little things come to mean a lot. Coloring books, glitter lip gloss, multicolored Goldfish crackers, visits from friends and family.

And that flood of support is what has kept the Lubrechts going. Brick Township stepped into the breach.

Friends wasted no time setting up a candlelight vigil for Avery on Windward Beach. Fundraiser after fundraiser for the little girl have followed, sometimes two or three a week. The events have come so fast and furious it's been hard to keep up with them to make sure they get into the Bulletin.

Stacey and Avery were home for Mother's Day. Stacey woke to find that someone had left flowers on her doorstep. A neighbor walked over with pink bows with the words "Praying for Avery" that Mr. Alan, a local florist, had printed up for them.

"Today alone there was someone arriving with a Costco delivery, a grocery store run, a pickup at the pharmacy, a meal delivered, a wagon ride around the neighborhood, a bank deposit made, visits for Avery and me, more gifts, and my brother pulling the 'night shift' helping me on 'throw-up' patrol. I think he changed and washed 3 sets of sheets," she wrote on May 13.

The Lubrechts' landscaper, Larry DellaSanti, offers to take care of their lawn free all summer. He shows up with a bag of toys for Avery. It's standing room only at a cut-a-thon fundraiser for Avery at the Salon Milan. Paul Prendergast Karate chooses the family to be the recipients of its annual "Random Acts of Kindness" fundraiser.

The Lubrechts would need all the support they could get. One week later, Avery "crashes," unable to breathe on her own. Doctors perform emergency surgery right in her room to drain brain fluid and relieve pressure. Avery is put on a ventilator.

She comes through the crisis like a trouper. Doctors discuss a grueling round of high-dose chemotherapy followed by stem cell transplants. But more bacterial infections, high fevers, bouts of high blood pressure and breathing difficulties are to come.

"The longer this goes on, the harder it is to be here," Stacey Lubrecht wrote on July 11. "I guess the longevity of this fight is really starting to be clear, and I see that there is really no true 'end' in sight. A cure, yes, but an end, no. Every ache and pain and fever from here forward will spark that little fire of fear in me."

Some good news comes on July 16, when an MRI shows the tumor on Avery's spine is substantially reduced. But her brain infection has taken its toll on the little girl'smental faculties. She has seizures and hallucinations.

On July 30, Avery's doctors order another MRI. Avery is lucid about 70 percent of the time. At one point, Stacey hugs her daughter. Avery looks right at her and says, "Can you get my mommy now?"

"My HOPE is still planted firmly in our window sill, still reminding me every day that we continue to choose to believe in a positive outcome," Stacey writes that day.

But just one day later, on July 31, comes a post like a punch in the stomach. The latest MRI shows that Avery's cancer has exploded, filling nearly every space in her brain. The tumor developed a resistance to the chemotherapy. Nothing more can be done to help her, her mother writes.

"It is with an excruciating amount of pain and sadness that I write this update," Stacey wrote.

Avery came home to Brick on Saturday. The family has arranged for hospice care. Stacey asks that the family be given a few days of privacy to get settled.

There is a picture of Avery on the Carepages.com Web site, one of many her mother has uploaded. It was taken at one of the Brick oceanfront beaches about a week before her diagnosis. Avery is beaming broadly, into the sun. Her arms are outstretched, her light brown ringlets cascade down her shoulders.

"Avery was born to do something wonderful for everyone," her mother wrote on June 11. "She's touching lives in a way that is like the proverbial pebble in the pond. Daily, people e-mail me, some total strangers, about the positive impact our family's journey has had on them. I know that this is just the start of a lifetime of that sort of 'Avery Effect.' "