Raef Casner and his family have plenty to be thankful for this holiday season. Thankful for being alive Thankful for support Thankful for every day
Just one year ago, a doctor looked his mother, Lea Casner, in the eyes and delivered some hard news.
If Raef didn’t receive a liver transplant soon, his days were numbered.
“You’re looking at three months,” the doctor said, according to Lea.
“He (Raef) never knew that.”
But this story has a happy ending. Raef, 12, and his brother Evan, 10, rustled around the classroom in Jefferson Elementary where Lea works, laughing, fighting and running around the tables and chairs.
“I’m so thankful for having my son back,” Lea said.
In August of 2012, right before Raef was slated to start fifth grade at Jefferson, he complained of not feeling well.
Eventually he became so sick he couldn’t walk. A CAT scan at Children’s Mercy Hospital in Kansas City revealed things had taken a turn for the worse.
“He had a tumor the size of a grapefruit on his liver, and it had ruptured,” Lea said. He was diagnosed with stage II hepatoblastoma, a rare form of liver cancer normally seen in toddlers and infants.
“It was so odd, that type of cancer,” Lea said. “He is a national case. At Harvard, his case is in the books.”
He was immediately placed on chemotherapy and admitted to the hospital. Two days later, doctors performed a liver resection taking 80 percent of his liver in the process of removing the tumor. He and his family returned home under close scrutiny and a chemotherapy regimen with medication. Then, in October, he began having seizures as a side effect of the therapy.
“I was on the phone like that,” his mother said, with a snap of her fingers. He was careflighted back to Children’s Mercy, while Lea was forced to drive there by herself. “That was so hard.”
When the cancer did not respond to the chemotherapy, the doctors recommended placing Raef on the list for a liver transplant.
They stressed timing was of essence. It was Jan. 22, 2013.
“We had our bags packed and ready to go,” Leah said. Two weeks later, they got the call. A man from Denver was donating the liver to Raef. The family rushed to the hospital to prepare for the 12-hour surgery.
“He was nervous, very nervous,” she said of Raef before the surgery. “But he’d still smile, and he’d still laugh.”
She got to wish him luck in an area called Reunion Avenue in the hospital, a hallway where families see each other before and after surgery. They received hourly phone calls on Raef’s progress.
“I don’t know what parents would do without that phone call,” Leah said.
12 hours later, Raef was out of surgery and on his way to recovery. His brother Evan even got the chance to see his old liver, Leah said with a laugh.
“I didn’t want to see it until everything was done.”
The transplant was a huge success.
“It is such a blessing, it just gives me goosebumps,” Leah said of their time in Kansas City. They stayed at the Ronald McDonald House near the hospital.
When Raef was first admitted into the hospital, they had no clothes on their back and only the paycheck that Leah had recently picked up from Jefferson Elementary.
They lived there for several months, and were able to move back to Iola in May. While living at the house, she and her family had to pay for almost nothing. They had meals provided by volunteer groups, play rooms for the kids and support from the workers there.
Raef spent his 12th birthday in the hospital, and wasn’t able to eat his cake, but they had been through the worst. Leah wasn’t able to work during Raef’s illness — they weren’t able to keep their van — but they saw support from nearly everyone in their lives.
The staff and students at Jefferson Elementary made a get-well card for their fellow student, and held fundraisers to help with the monumental medical costs for Raef’s new liver.
“I have no idea all the people that helped,” Leah said. “I mean, being a single parent and going through that. I just thought, ‘that is our city.’ That kept us going.”
Once the family moved back to Iola, the school board approved a tutor to help Raef catch up on his school work during the summer. He is now in the sixth grade, and although he is on a different plan than most students, he wasn’t held back a grade.
Now, the Casners ride with friends to school every day.
“It was a fast year, I can’t believe where we’ve been,” Leah said, while looking at her two sons playing.
Raef had his chemotherapy port removed from his chest on Nov. 18, and his hair is beginning to grow back from the treatments. He has partial hearing loss from the chemotherapy, and is forced to wear a hearing aid some of the time. But considering their situation one year ago, those are minor qualms.
The liver transplant was an overwhelming success, and Raef is feeling better every day. He is currently taking 16 medications several times a day, and will be taking anti-rejection medication for his liver every day for the rest of his life.
“He takes a cocktail every day,” Leah said.
“I’ve never had a cocktail,” Raef replied. His mother laughed, “Not THAT kind of cocktail. At least his sense of humor is back.”
Raef pointed out, “the new normal” is better than no normal at all.
“I’m just thankful for being normal, I guess,” Raef said with a shy smile. “I’m glad to be back at school.”
Raef was selected by the Make A Wish Foundation to go on a trip to Disney World in Florida in March. Leah said they have never been to the ocean before, and she’s interested to see what Florida will be like.
The “firsts” taste even sweeter these days.
A THANKFUL HEART – The Casners have a lot to be grateful for this holiday season
