A Long Journey
While scampering around the backyard one afternoon, Laina Blackburn hurt her knee. Her mother, April, noticed she was still limping the next day, so the family took the 21-month-old to the ER, where doctors concluded she had a sprain. Laina did not improve. A visit to her pediatrician was inconclusive, and the pediatrician recommended that if the limp persisted, they would need to see an orthopedist.
A quick trip to the orthopedist and a family day in New Orleans turned into a shocking diagnosis. After x-rays revealed a spot on Laina’s knee, doctors conducted blood tests, an MRI, and a bone marrow biopsy. The spot on her knee was where the bone marrow was producing so many immature white blood cells that it was extruding through her growth plate, giving her a fracture in her knee, a sure sign of Acute Lymphoblastic Leukemia.
April remembers the moment their lives were upended: “I was holding Laina on my right hip. I kept rubbing her back, staring at her face. I don’t remember the actual words the doctor said. I know she told me it was leukemia, and that we were moving up from short stay to the cancer floor.” Once the Blackburns were at Children’s Hospital, the process was quick. Only six days passed between Laina’s first appointment to her first chemo treatment.
Because Laina was so young, April and her husband, Seth, didn’t have a big talk with her about what was happening. They did, however, spend some time helping their four-year-old son, Ethan, understand what was going on with his sister. They read Hi, My Name is Jack, a book about a healthy boy and his chronically ill sibling, and watched a Charlie Brown episode about leukemia to help him comprehend Laina’s new reality.
The first nine months of treatment were the hardest because it was the most intense chemo. Laina lost her hair and stayed very sick. One scary result of the chemo was the lack of weight gain, which is critical for a toddler. Laina didn’t gain a pound from August to February, but they avoided a feeding tube because she finally started liking Pediasure (chocolate is her favorite flavor). Although Laina hit maintenance last summer, which meant only receiving treatment once a month, her little body has still been under immense strain. “Most leukemia families can live a normal life once you hit maintenance, but Laina responds strongly to full dose chemo. Her pattern is when she gets 100 percent of her dosage, her counts bottom out. Then, she has no immune system which means the bone marrow is suppressed, and they stop the chemo until it recovers. She’s been in the hospital every couple of months because she gets infections,” says April. The Blackburns have to be on a constant lookout for signs of infection like fever, paleness, lethargy, or easy bruising.
Despite the pain and difficulty of the past two years, Laina has grown into “a firecracker” of a three-year-old. She may be quiet at first, but once she warms up, she’s loud, rambunctious, and demanding. Her independence is blossoming in her own way, “When we go for blood draws, she’ll hop up in her chair, hold out her arm, and say, ‘I’ll sit by myself!’” April says. Since having leukemia and receiving chemotherapy is all she remembers, her treatment life is normal to her.
The Blackburns take special care to help Laina feel as normal as possible, even during treatment. Laina has a “clinic bag” filled with Play-Doh, an iPad, books, colors, markers, scissors, and toys to keep her occupied. April shares that “she’s gotten a little more fearful because she knows it’s somewhat unpleasant. Sometimes I can bribe her out of it with, ‘Let’s do your port and we’ll get Cheetos,’ and sometimes I can’t.”
This November will end Laina’s lengthy treatment plan, which means a trip to Disney World with the Make-A-Wish Foundation. The entire family is thrilled, especially Laina, who is excited to meet Elsa, Anna, and Mickey Mouse.
The fight still is not over, however. Laina will go for checkups monthly and be closely monitored for the first year because that time is the highest risk for relapse. But the Blackburns are so thankful to have come this far with their little warrior princess. “It’s a very, very long road. It’s a marathon. The longer you walk it, the more tired you get, but if I have learned anything at all from this journey, it’s that we are all capable of so much more than we think we are. I’ve heard, ‘I couldn’t do what you do, you are so strong.’ To that I say, you could. And you would, if it was your daughter,” April says. ■