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Showing the love: ‘Community has opened their hearts’

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Around the curved corner of an Indianapolis hospital hallway, a tiny girl rode her IV stand like a skateboard.

Macenzie Hawkins pumped her legs twice and glided on the wheels of the stand toward her room at Riley Hospital for Children at Indiana University Health. Her plush pink Minnie Mouse robe breezed behind like a cape.

Even though she was headed toward another round of chemotherapy, the 7-year-old Greenwood girl couldn’t help giggling.

Laughter has been a rarity for Macenzie and her family for the past three months. She is in the midst of treatment for neuroblastoma, an extremely rare childhood cancer that has attacked her nerve cells and spread throughout her body.

Since starting her treatment, Macenzie has become an encyclopedia of cancer terminology and treatment. She can tell you how she gets a granulocyte-colony stimulating factor shot during chemotherapy to stimulate white blood cell growth.

She can describe her cycles of medicine and how to clean the dressing on her surgically implanted port.

“No 7-year-old should know about these things,” said Rebeckah Barnes, Macenzie’s mother.

To kill the cancer, Macenzie has to go through six rounds of chemotherapy, spaced about every three weeks. Some rounds last five days, others for only three, depending on the drug cocktail that her oncologist has put together.

The drugs are immediately followed by fluid, either potassium or saline, to flush the poisons out of her body and prevent lasting harm.

About Macenzie

Age: 7

Home: Greenwood

Parents: Rebeckah Barnes and Derrick Hawkins

School: Second grade at Northeast Elementary School

For however long the chemotherapy lasts, Macenzie basically moves into her hospital room. Riley Hospital for Children provides bags filled with activities, games and other ways to take her mind off the treatment.

Macenzie can wrap herself up with a plush pink robe inscribed with “Mighty Macenzie” in green thread. Chemo Duck, a stuffed animal in hospital garb and with a central line, has been her sidekick each time she reports to Riley.

“When I’m really scared, I can hug him. When I’m really grouchy, I can throw him, sit on him, whatever I want,” she said.

On the afternoon of her most recent round of chemotherapy, she glued multicolored sand onto a heavy piece of paper to make a smiling star and outer space scene.

Macenzie, a second-grader at Northeast Elementary School, has a love for art. She spends hours coloring flowers and horses on construction paper and makes up stories of the characters and people she draws.

“We know she’s feeling better when her imagination comes back,” Barnes said.

That change in her normally active imagination is what alerted her parents that something was wrong.

Symptoms started showing up in October. Macenzie complained of abdomen pain, so her father, Derrick Hawkins, took her to the doctor.

An initial scan showed a shadow in her abdomen, which would later be identified as a tumor. But doctors first thought it was simply constipation and would get better on its own.

Macenzie’s health grew worse. She started sleeping for hours after school and could barely make it home awake. Her eyes became strangely dilated, and she started dragging her foot.

“She was so lethargic. She wasn’t her normal self,” Barnes said. “By Christmas break, she was sleeping 12 to 14 hours a day.”

Eventually, Macenzie couldn’t walk on her own. She’d stop in the middle of a grocery aisle and had to be carried. Her appetite disappeared, and she developed a fever that refused to break.

As the panic built, Barnes took her daughter to multiple doctor visits. Diagnoses of the mysterious affliction ranged from growing pains to juvenile arthritis to urinary tract infections.

“I had suspicions that it was something worse but was being told by a physician that this was what was going on,” Barnes said. “I was frustrated because I knew something was wrong with her, but no one could find anything.”

Still, at no point did she suspect her daughter had cancer. The thought hadn’t entered her mind until the nurse at Northeast Elementary School pulled her aside and shared how closely Macenzie’s behavior mimicked a friend who had cancer. She did some research on her own and became convinced that Macenzie had a strange form of cancer.

At the urging of another nurse at Macenzie’s pediatrician’s office, Barnes rushed her to the emergency room, and from there she was sent to Riley Hospital for Children.

When doctors took an MRI, they found the cancer.

A softball-sized tumor had wrapped itself around her spleen and the major blood vessels in her abdomen. A vein called the vena cava, which normally runs parallel with the spine, was instead curved and diverted in Macenzie.

The diagnosis was neuroblastoma, which forms in nerve cells. Only 450 children in the U.S. are diagnosed with the particular type of cancer each year, though it is the most common cause of tumor cancer in children.

Macenzie was in the hospital for 14 days with the initial round of chemotherapy and treatment. She had surgery to remove a piece of the tumor so doctors could test it. Two separate samples of bone marrow were taken, and she underwent dozens of tests.

So far, she has completed four rounds of chemotherapy, with two remaining.

As Macenzie’s parents have struggled with the nightmare scenario for their daughter, they’ve decided that at no point should she ever have to be alone in the hospital. Barnes drives from Greenwood every day to bring her dinner and stays with her over the weekend when she’s admitted.

Hawkins, who works in the information technology department at Riley, can come up during lunch to see her.

Barnes’ mom, Janet Barnes, has taken a leave from her job at Eli Lilly and Co. to move into their home and help care for Macenzie during the day when she’s getting chemotherapy.

They also have relied on the overwhelming support that the community around them has provided. Neighbors have brought over meals. Churches have given the family gift cards. The Northeast Elementary School community has done what it could to help the family through the difficult time.

The Marion County Crusaders, Indianapolis’ semi-pro football team, inducted Macenzie as an honorary player. The presented her a jersey — No. 1 — and let her do the coin toss on May 10.

A benefit motorcycle ride to help with costs, such as gas to drive to and from Riley, is scheduled for Aug. 16.

“The entire community has opened their hearts and their wallets and done what they can for us,” Barnes said. “It’s been one thing after another.”

Macenzie will need to have a stem cell transplant after her final round of chemotherapy in July. That last dose will all but wipe out the cells in her bone marrow — healthy and cancerous at the same time.

She’ll be in isolation for four to six weeks after the transplant. Because her immune system will be so weak, doctors want to limit her contact with other people.

When Macenzie is finished with treatment, she’ll get to ring the hospital’s celebration bell. The nurses and doctors who have helped treat her will gather around and watch her symbolically mark the end of her ordeal.

“I was thinking after, we can go and get some ice cream,” she said.

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