Grateful for the Gifts
Writer Amanda Christmann Larson
Gratitude is one of the most difficult but most rewarding habits we can cultivate. Recognizing the gift in each struggle turns the most troubling of situations into opportunities and reminds us what is truly important. It isn’t always easy though, especially when those struggles threaten the lives of those we love.
The Elliot family knows they have much to be grateful for. They have gone through unimaginably difficult times, only to come out stronger and more united in the end, and they are ready to pay it forward to other families whose pain they understand.
When Ewan and Melana Elliot began their life together as a couple, they could not have known where their path would lead. Ewan, a computer programmer, and Melana, an accountant, were rooted in their goals and thought they were ready for the challenges they would face. They had their education, their home, and their family plan. When the couple became a trio with the birth of daughter Hayley in 2000, their lives were steadily moving along as expected.
In spite of a difficult pregnancy and Hayley’s premature birth, all appeared to be normal. “She was beautiful,” Melana recalls with a mother’s pride.
Their plans were soon derailed when, four weeks after Hayley’s birth, Ewan and Melana noticed she appeared pale. They took her to the doctor for a weight check, and they were referred to a specialist for a blood draw. Perhaps a vitamin supplement would give her the boost she needed, the new parents were told.
A simple blood test showed little Hayley’s red blood cell count was dramatically low. The situation was critical. With her parents in a daze, Hayley was rushed to the hospital for more testing.
“I just kept thinking, ‘What happened to the vitamin supplement?!’” Ewan says. “We were stunned.”
A battery of additional tests revealed Hayley had a rare disease called Diamond-Blackfan anemia. Her bone marrow did not produce enough red blood cells, which carry oxygen throughout the body. Only five to seven out of every one million children is born with this particular type of anemia. Of them, 70 percent respond well to low-dose steroids; through trial and error, the Elliots discovered Hayley was one of the 30 percent of children with the disease who did not.
The Elliots were determined to do anything needed to help Hayley. When high-dose steroids didn’t work, they took her to Phoenix Children’s Hospital once a month for transfusions. They administered nightly chelation therapy, which required them to stick the wriggly toddler with needles and connect a special pump to rid her body of excess iron it could not utilize. They knew there was a strong possibility that one day she would need a bone marrow transplant to save her life.
The couple also knew they wanted more children. Because genetic abnormalities like Hayley’s could be pre-determined through technology, the couple decided to try in vitro fertilization. Four different times, they underwent the physically and emotionally grueling process of hormone therapy and implantation; each time it failed.
They gave up on the in vitro process, knowing they had made their best effort. Feeling defeated and low, the couple decided their plans were not their own to decide. Three months later, they learned how right they were – in the most unexpected of ways: they were pregnant again, with no outside help.
Ian entered the world five years after his sister, happy and healthy, and with the same precocious smile. He rolled with the routine at home, going along to PCH each month for Hayley’s transfusions and spending plenty of time together with his sister and adoring parents.
Two years later, in October 2007, another doctor’s appointment revealed the biggest hurdle yet. Hayley’s body had quit producing white blood cells and she needed a bone marrow transplant. By fate and not by design, Ian was a perfect match.
Melana still tears up when she recalls Hayley’s last evening at home before the transplant. “It really hit me the night before. If you can imagine, as a parent, you’re thinking, ‘This may be the last time I give my child a meal, and the last time I tuck her into bed.’” She pauses, overcome with emotion.
“With a bone marrow transplant, if it doesn’t work, it doesn’t work. It could have been the last time we were a family of four. That is unimaginable.”
The process began with high-dose chemotherapy. Hayley lost her hair and suffered severe nausea. Over a week later, when her own marrow was gone, Hayley was ready for the transplant.
Ian, just a toddler at the time, remained blissfully unaware. “I didn’t really know then because I was only two,” the second grader now says. He saved his sister’s life in a process that took a single day for him, but months of recovery for Hayley.
Coming home was much-anticipated, but it had its own challenges. The house had to be kept immaculate for Hayley’s compromised immune system, and she had to remain isolated from other people. Bedding had to be changed daily. Special foods had to be prepared, and 12 different medications managed.
“On the first day, I was really excited to be home,” Melana says. “On the second day, I found myself thinking, ‘Who’s going to do all of this?!’
“Maintaining a balanced family life when you have a seriously ill child is daunting enough,” Melana adds. “But the transition home following the procedure is the most difficult part.” Still, they managed, and once-weekly check-ups turned into every-other-week visits. Then they became monthly, then once every three months.
Today, Hayley visits her doctor for check-ups once a year, and goes to Phoenix Children’s Hospital’s Late-Effects Clinic annually. There, physicians hope to identify issues to monitor for children receiving transplants in the future.
Now a healthy teenager, Hayley loves math, science, music, and performing in community theater productions. She wants to study engineering in college, and she has the intelligence and maturity to succeed. She will always be at-risk for secondary cancers, but she knows what to watch for, and at 13, she has taken some control over her own health.
Ian is also well-adjusted. A talkative and polite 7-year-old, he loves playing with Legos, drawing, playing sports and watching Garfield cartoons. All seems well in the Elliot household, and by all accounts, it is.
But the family has not stopped living in gratitude. “We know, no matter what we face, we have made it this far thanks to the help we received from others,” Melana says. “Because of this, we have dedicated our time, finances and hearts to helping other families who are right now enduring a part of their journey that nobody should ever have to go through alone.”
To reach out to others going through bone marrow transplants, the Elliot family created the Carols & Candlelight dinner, a holiday evening benefitting the Ottossen Family Blood and Marrow Transplant Program.
The dinner will take place at the Terravita Country Club December 7 at 6 p.m. Tickets are $85 per person, with raffle tickets available. Over $7,000-worth of in-kind donations has been received.
Carolers will greet attendees in song, and the dining room will be aglow with candles. The evening will begin with cocktails and light hors d’ouevres, continue with an elegant dinner, and end with assorted desserts and a champagne toast.
“It will be a celebration of life,” Melana explains.
And an evening of gratitude. Because every trial in life is ripe with opportunity to learn to live life to its fullest, appreciate the small joys, and celebrate the love that surrounds us all.