For more information about aplastic anemia, visit the Aplastic Anemia and MDS International Foundation at www.aamds.org.
Upon entering Paul and Lizzie Allen's northside home, one's attention is drawn to the “word wall” -- an arrangement of colorful alphabet letters with words posted beneath them.
The Allens, parents of three sons, are homeschooling 7-year-old Parker — a charmer with chocolate-brown eyes and dark hair that grew back curly after last fall's chemotherapy resulted in baldness.
“We've transitioned from public school to 'Mrs. Allen School' at home with mommy,” explains Paul. “That can be a struggle with a (child) like Parker who is very social and misses his friends at Hickory Center (Elementary) a lot.”
“We've adjusted to a different way of living,” says Lizzie. “Parker (can't) be around crowds — no public school, no church. ... You have to remind yourself that this, too, shall pass, and our situation could be worse. We are all healthy and happy. I'll take that 'normal.'
The Allen family's journey from the “old” normal to a “new” normal began last spring.
Indiana natives Paul and Lizzie met in college, marrying in 1998. Sons Spencer, 9, Parker, and Hunter, 5, were born after the couple's 2001 move to Fort Wayne.
“Parker had just started practicing lob ball (last) May,” recalls Lizzie. “One practice, he really slid into second base hard. It (his arm) bruised up real good, but I didn't think anything of it.”
More bruises followed, then bloody noses. During a family trip to a St. Louis Cardinals game, a rash appeared. On returning home, Lizzie called the doctor, who squeezed in an afternoon appointment.
“They did a blood draw, and we went back home,” she recalls. “As soon as I walked in the house, the phone rang, and the doctor explained that his blood counts were really low. He needed ... a platelet transfusion.”
“Lizzie called me at work with that scary sound in her voice, and told me that the doctor said, 'Pack your bags to get admitted for the night,'” adds Paul.
After admission, Parker endured more blood draws and an IV while waiting for the transfusion.
“It was almost 9 p.m., and I told Parker we need to get ready for bed,” Lizzie says. “I opened my Bible to read from Psalms, and Parker stopped me and said, 'We need to read Matthew 11:28.'”
“I looked it up: 'Come to me, all you who are weary and burdened, and I will give you rest.' Ah — what a moment! It was the perfect verse for us at the time,” she explains. “It was his memory verse from Sunday School. That verse ... gave us rest for the night.”
Parker's first platelet transfusion was completed at 3 a.m.. The next day, the Allens were advised that bone marrow aspiration and more blood tests needed to be conducted at Riley Hospital in Indianapolis.
“When I heard 'Riley,' my heard sunk, and I was honestly terrified,” says Lizzie. “I prayed, cried, praised God, cried, and prayed some more. It is horrible to know something is severely wrong with your child, you can't help him, and it could take his life. It feels like you can't breathe... I had to let God take over, to rely on (Him) alone to make those breaths easier.”
The constant blood draws at Riley concerned Parker.
“He thought he was going to run out of blood, and he didn't understand how he would make more,” says Lizzie, who explained that food and drink help produce blood. “He wanted red Gatorade for the blood draws. He looked at me during one and said, 'Look, mommy -- I'm making blood!'”
“The toughest part was wondering what the cause was, what the condition was, and what the treatment would be,” recalls Paul. “Each stage had its own increasing level of waiting.”
By mid-July, with cancer and leukemia ruled out, a diagnosis of severe aplastic anemia was made. Tests and transfusions continued through the summer. Support poured in from Paul's employer, their church family and Parker's school. Prayer sustained them.
“We prayed a lot to have Parker healed and fixed,” says Lizzie. “Spencer and Hunter prayed for Parker, and our family would pray nightly for him. I knew that Parker would be healed one way or another — either here or in heaven — and I had to accept that, to hang onto Jesus and not let go.”
“Spencer was the first one, I think, to really hear God speak,” says Paul. “He wondered if this was God turning our family toward a higher purpose — to focus us more on loving the poor and those who don't know Jesus.”
It became apparent that a bone marrow transplant was their only option for a cure. “(It) would mean weeks in the hospital, missing a year of school, and chemo to set up the transplant,” Paul explains.
Both siblings were tested, and Spencer was a perfect match. The couple explained the process to the boys.
“I was trying to stay together myself,” recalls Lizzie. “Then I looked over ... and they were hugging each other. Oh, my, what a picture — they did get it! Spencer was more than willing to save his brother.”
“He'd been praying a lot and wishing he could help his brother,” says Paul. “He knew this was an answer to his prayers. What pure joy when God inspires you through the faith of your own children!”
The transplant was Sept. 26. Spencer was put to sleep for the bone marrow draw which took several hours. After testing, the transfusion of bone marrow into Parker's central line began. “It was surreal seeing that bag of marrow hanging by his bed, knowing the new life it would provide,” Paul recalls.
Parker remained in Riley until November when he returned home to celebrate his 7th birthday.
It will take several more months for Parker's immune system to rejuvenate, but the Allens believe their journey has brought an increased awareness of God's presence and purpose.
“God's word has a greater richness, beauty and peace,” Paul reflects. “We know that (by) putting us through this, God has called us, and (we experience) the joy that comes through knowing Jesus, no matter the circumstances.”
“I discovered a deeper realization that God is the Comforter, a place of refuge, giver of strength, provider and sustainer,” adds Lizzie. “These used to be words, ... now the Scripture has come to life.”