Family finds faith and beauty in child’s journey

Published 12:54 am Sunday, December 20, 2009

Less than a year ago, Terri and Johnny Bordelon had no idea their world was about to be turned upside down and their faith tested. With five children, the youngest just two, life seemed to be going along pretty good. It was April and winter had faded away and the couple and their kids looked forward to summer.

But then two-year-old Rayne began to get cranky and Terri thought perhaps it was yet again another ear infection. When a low grade fever also kicked in, Terri decided to take the toddler to the doctor’s and started thinking perhaps it was time to have tubes placed in her daughter’s ears to ward off the infections.

After the doctor visit, which included some blood tests and an ultrasound of Rayne’s belly, which had seemed to her father as a little swollen, Rayne was put on antibiotics to fight the infection and iron for a slight case of anemia.

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That was April 15.

When the fever persisted a few days later and Rayne was obviously not responding to antibiotics, Terri called a pediatrician who had been highly recommended to her to see if they could fit Rayne in.

As a social worker in private practice, Terri explained what was going on with her daughter and asked the nurse if the doctor to find a way to see Rayne the following day.

Terri writes in her Blog, “This nurse said, ‘Can you bring her now?’ I told her that my day was booked up with patients… that I was off the following day. Was there any way she could fit Rayne in the next day? She said ‘I want you to bring her in now.’”

From that day forward, Terri and Johnny’s days would begin to tumble into one another and their faith would be tested. But what they also discovered was an unwavering strength and commitment from one another, as well as friends, strangers, their children, family, and in their daughter’s own indomitable spirit.

It didn’t take long for the doctor to order tests to confirm what he suspected the toddler was suffering from. And what Terri did not expect, but somehow knew, is that the tests would reveal Rayne had something much more difficult to fix than an earache.

With tumors in her abdomen, chest area, and spine, Rayne had neuroblastoma — a cancer most commonly diagnosed in infants and young children — and she had Stage 4 — in Stage 4 the cancer has spread to distant sites such as lymph nodes, bone, liver, skin, bone marrow, or other organs.

“Since that day, 4-20-09, I’ve tried to find the words that might best describe that moment,” writes Terri. “Devastation doesn’t quite capture it… my husband helped me describe it. He said, “You know when you’ve had a terrible nightmare and your breath catches in your throat and then you wake up and realize that you are safe and all is well? It is that but reversed… you’re safe, life is normal and all is well, then your breath catches in your throat and you wake up in a nightmare.”

While the Picayune couple started Rayne’s treatment at the Children’s Hospital in New Orleans, Terri had an unyielding feeling that Rayne needed to go to St. Jude’s.

After calling her friend Lisa at 11:30 at night to ask her advice, and being told, “I don’t care if you have to load that baby up in your car, IV and all, you get her to St. Jude!” Terri and Johnny knew what they had to do — take Rayne to St. Jude’s Children’s Hospital in Memphis, Tennessee — a daunting task since it would mean that Terri would have to stay in Memphis, six hours away, while Rayne underwent treatment and Johnny would have to take care of the home and three of the other children, Kaleb Bailey, and Emmarie and Madison Bordelon – Kaci would stay with Terri and Rayne in Memphis.

The couple, after months of watching their child endure hours of surgery, several rounds of chemotherapy, and a stem cell transplant, discovered something about themselves, their family and friends, and their faith.

“Through many tears, I have come to realize that trusting God means trusting Him no matter what,” writes Terri. “Even if His divine plan might include taking my baby to Heaven, I must trust He will put the shattered pieces of my heart together again.”

She also discovered a certain beauty and joy to the world even when facing losing her child. She writes, “I added ‘beautiful’ when describing our journey with childhood cancer. We have found it amazing that a tormenting, catastrophic illness can take everything from you, yet give you more than you could ever ask. Ultimately given by God, I have come to refer to such things as “the gifts of cancer.”

Continuing, Terri explains what these gifts are. “For instance, I have never been so proud of my children. Last year at this time, Johnny and I were discussing the frustration we felt with how materialistic our children had become. In talking with other parents, this seemed to be a common denominator in our society these days.

“This year, Johnny told the kids that we would be celebrating the Spirit of Christmas. Simply put, there was no money for gifts. The response he got from each of them made me cry. They all seemed so grateful to have their baby sister for another Christmas. Whether or not they got a gift really didn’t matter.

“Furthermore, while I did not think it previously possible, I have never loved or respected my husband more. How he manages all that he does, while keeping a positive spirit and an unrelenting faith in God continues to amaze me.

“There is also the gift of putting the vacuum cleaner down, so that I can watch my children play.

“The gift of time with my older kids, whom I often go months without seeing.

“And the gift of those who take the time to care for them.

“There is the gift of cherished cards or letters from total strangers that lift me up and make me feel stronger.

“And the gift of bills that mysteriously get paid.

“The gift of St. Jude with its compassionate staff, brilliant doctors, and precious volunteers.

“The gift of Habitat for Hope, the apartment they gave us, and the support that never ceased.

“The gift of learning the true meaning of what it means to be a priceless sister and friend.

“The gift of a step-grandmother.

“The gift of home and the treasure of a little town called “Picayune.”

“The gift of perspective.

“The gift of appreciation… true appreciation. I remember rocking Rayne, feeling numb, turning to my mother, barely able to utter the words, ‘I am so tired of watching my baby suffer.’ My mother’s voice cracked as she said, ‘I know. I’m tired of watching my baby suffer.’”

And, said Terri, the gift of those who have helped them in ways they could not have imagined before Rayne’s diagnosis. She writes, “The gift of those who have stood vigil beside us, lifting us up through this journey, praying us through it, your gifts, donations…there are no words. God has given us so many blessings throughout the last eight months. He has shown us amazing miracles through our baby daughter, He has given us friends that we now consider family, and He has mercifully “Watched with me over my flock by night.” He gave us all of these beautiful gifts, and He gave them to us through cancer.”

But the best news, said Terri, is that the stem cell treatment was successful and Rayne would be coming home in mid-January. “The exciting news is we’re coming home!” said Terri. “It is so awesome and unbelieveable to be at such a place that we’re coming home — coming home to Picayune.”

She added that Rayne still has to undergo 12 more radiation treatments. “Then we’ll see if she can start the antibiotic treatments, but I am so happy to be coming home.”

To keep up to date on Rayne’s progress, visit

http://www.caringbridge.org/visit/rayne/