Miracle child

2-year-old Lily Porter fully recovers from brain tumor

Sheryl Smith and Scott Mims

Published Saturday, September 27, 2008

ISABELLA — Ricky and Julie Porter do not need proof that miracles happen. All they have to do is look at their daughter, Lily.

Rewind to July 10, 2007, the day the Porters’ lives were turned upside down. Lily was being sent to Children’s Hospital for a routine CT scan ordered by her pediatrician due to the larger-than-normal circumference of her head.

Before Julie could get home with her daughter, however, she was ordered to return to the hospital only to have her worst of fears confirmed – the CT scan showed a brain tumor.

Lily was later diagnosed with an aggressive cancer called Medulloblastoma at only 10 months old.

The plan was to remove the tumor from the back of the brain next to the brain stem and cerebellum, and then begin chemotherapy four weeks later. Things didn’t go according to plan, however.

On July 13, Lily underwent her first brain surgery to try and remove the tumor. Dr. Blount, Lily’s neurosurgeon, encountered problems at the start. She began losing a tremendous amount of blood.

Dr. Blount called in another surgeon for assistance, and they were able to stop the bleeding. The doctors and Lily’s parents felt it was truly a miracle that she made it through.

But the tumor remained. Thence, a second surgery was scheduled three days later.

Dr. Blount performed the second surgery and felt he had removed all of the cancerous tumor, but later an MRI showed a small portion remained. It was lodged in a crevice between the cerebellum and brain stem. It was going to be a tough place to get to. Any tugging on the brain stem could cause many problems for Lily, but the doctors felt a third surgery was the best option for her.

During a delay due to infection, the remainder of the tumor miraculously floated down to a more accessible area. The doctors were able to remove all of the remaining tumor, and the surgery was deemed a success.

“We felt this was truly another miracle from God,” Ricky said.

All the while from the first surgery, an EVD (external ventricular drain) was placed, which relieves pressure/fluid from the brain. The EVD prevented Lily from being moved, held or comforted by her family.

“Not being able to hold and comfort Lily was one of the most difficult things for me,” Julie said.

It was a constant battle trying to regulate the EVD to maintain the correct amount of pressure on Lily’s brain. This eventually led to another surgery to create a hole in the third ventricle for the fluid to drain naturally. They were trying to prevent a permanent shunt from being placed. The surgery seemed successful.

By Aug. 1, Lily was staying sick and sleepy all the time. On Aug. 14, she was diagnosed with yeast meningitis, which would require a hospital stay of nine weeks and would delay chemo.

Two days later, her heart rate dropped to 69 and doctors could not wake her. An emergency CT scan showed her ventricles were extremely large and the surgery had not worked. Her drain was turned back on to relieve pressure. Her heart rate dropped into the 50s and she was sent to ICU until the pressure had been relieved.

Another surgery would be scheduled to place a permanent shunt, but all the while the meningitis further delayed chemo.

“So many things we were worried about weren’t even the main issue,” the Porters said. “All we could do was just take it one day at a time.”

A glimmer of hope was seen Aug. 25 when Lily smiled for the first time in over a month. On Aug. 31, she celebrated her 1st birthday at Children’s and the room could barely hold all her gifts. She celebrated by saying “Mama” and “Bye-bye.”

The shunt was put in Sept. 12, but not before a battle with a blood infection. Lily was able to receive her first chemo treatment the next day, and finally Sept. 26 she went home for the first time in nearly three months.

An MRI in December revealed Lily was cancer free, but her fourth ventricle had a blockage. A catheter was routed from the fourth ventricle to the shunt. She was originally scheduled to be in the hospital on Christmas due to chemo, but the date was pushed back due to the surgery.

Lily rebounded well and began crawling, pulling up and laughing within a week after surgery. She was able to attend all family gatherings and be home for Christmas.

“Lily had never felt better. It was truly a blessing,” the Porters said.

The second stage of treatments involved such high doses of chemo that two stem cell transplants were required to help Lily’s bone marrow recover. There were only minor infections after both transplants, however.

“The doctors were amazed at Lily’s recovery,” Julie said.

After her last chemo treatment July 10, her first post-treatment MRI was all clear. Physical therapy and time eventually corrected motor functions that had been disrupted by surgery.

Now at 24 months, Lily is catching up on all the time she missed while in the hospital.

“There is no reason she should not be able to catch up with an average 2-year-old and live a normal life,” Dr. Blount said.

Although Lily is confined to home because of her weak immune system, continued therapy and testing will help her recover.

“She is doing very well,” Julie said. “Her life seems to be getting back to normal. She is acting like Lily used to act before she got sick.”

The Porters have a Caring Bridge site for Lily on the Web at www.caringbridge.org/visit/lilyporter.

September is Pediatric Cancer Awareness Month, and the Porters have some advice to give families who have to tread the same road:

“Take everything one day at a time and keep in mind that God’s plan is perfect. There are reasons for everything.”

The family thanks each and every one that has made contributions during this trying time. They also appreciate all the cards, visits, food, but most of all your prayers and support.

---

WOULD YOU LIKE TO SHARE THIS STORY?

---