Beckett Burge is 4 years old boy, who was diagnosed with leukemia last year. Beckett has the most common form of leukemia in children, ALL. It covers almost 30 percent of all pediatric cancer.
According to Children’s Hospital of Philadelphia (CHOP), disease affects the immature forms of white blood cells, called lymphocytes, which identify and destroy foreign proteins in the body. But with ALL, the bone marrow makes too many immature lymphocytes that do not mature correctly and do not have the ability to fight infection. Beckett’s mother writes about the day when all of these started: “Buckett’s daycare called me on April 23 (2018) and asked me if I could go in and take him, because he had been running a fever.” Buckett was first diagnosed with an ear infection and prescribed antibiotics. But Beckett’s fever not only disappeared, but it also went up to 104 next night. They went to the emergency room. After some time their pediatrician sent them to Children’s Health in Plano.
“I was expecting to hear he had a punctured eardrum or something he would bounce right back from with a few days of antibiotics. The ER nurse walked in about an hour later and had a portable cell phone in her hand,” Burge wrote, on Sept. 15, 2018. “She said ‘your pediatrician is on the phone and would like to speak with you.’ I figured he was just checking in. That’s the kind of guy he is and that’s why we love him. He informed us that the CT scan came with pneumonia in his left lung and his labs came back with a hemoglobin of 5.5 and a white blood cell count of 150,000. He then informed us that Beckett had leukemia.”
Burge says that the only thing she knew about leukemia back than was that leukemia was cancer and cancer is never good. After Beckett was diagnosed with this “not good” thing, the whole family started researching and learning about leukemia. Now, they know almost everything which can be known in today’s world. Even Beckett’s 5 years old sister, Aubrey is fully involved in learning and trying to do right things for her little brother. From Plano they were then transferred to a hospital in Dallas because Beckett was also suffering from acute respiratory failure and pneumonia in his left lung. In September 2018, they were given his timeline for treatment, which is slated to end in August 2021.
That was when the whole family decided that they had to change their whole lives, they had to live with Beckett’s life and comfort him as much as possible. While Beckett was running from one doctor to another, then 4 years old Aubrey was watching all of this. “My then 4-year-old watched her brother go from an ambulance to the ICU,” Burge wrote. “She watched a dozen doctors throw a mask over his face, poke and prod him with needles, pump a dozen medications through his body, all while he laid there helplessly. She wasn’t sure what was happening to her brother, her best friend.”
Aubrey and Beckett are only 15 months apart. According to Kennedy news and Media Burge said her son went from being a lively, energetic playmate for Aubrey to a sleepy boy who had to relearn how to walk following his month-long hospital stay. “A little over a month after Beckett was released from the hospital, Aubrey watched him struggle to walk and struggle to play,” Burge continued. “The lively, energetic, and outgoing little brother she once knew was now a quiet, sick and very sleepy little boy. He never wanted to play. She didn’t understand how he was able to walk before this, but now he can’t even stand unassisted. She didn’t understand the different therapies he had to attend to gain his strength back. To her, it was something special he got to do that she didn’t. Why couldn’t they go to their favorite trampoline park anymore? Why couldn’t they go to the splash pads they previously went to? Why didn’t he have to go back to school, but she did?”
Then the family decided that Aubrey was allowed to tag along her brother’s treatments. Some would think that this was not a right decision, because a 5 year old girl could get stressed and depressed watching all the doctors gathering around his little brother, watching all these sick people trying to find proper help. Yes, in some cases this might be true, some people can’t take all of these, but in Burges’ case everything went differently. Mother answers all the questions with her post and she explains why Aubrey was always with her brother, at hospital or even at the toilet, when Beckett was getting ready to puke, because of the chemo’s side effects.
“Children need support and togetherness, and should not be kept at a distance from the person who is ill, the most important thing is to show that they are taken care of regardless of the situation. She spent a fair amount of time, by his side in the bathroom, while he got sick. She stuck by him. She supported him and she took care of him, regardless of the situation. To this day, they are closer. She always takes care of him. Vomiting between play sessions. Waking up to throw up. Standing by her brother’s side and rubbing his back while he gets sick. Going from 30 lbs. to 20 lbs. This is childhood cancer. Take it or leave it.”
The photo where Aubrey is tapping on Beckett’s shoulder, when he is struggling with side effects went viral. It was posted in early September on Beckett Strong Facebook page and soon was shared more than 40000 times. This photo is the best illustrator of how the cancer affects not only the patient but the whole family. “One thing they don’t tell you about childhood cancer is that it affects the entire family. You always hear about the financial and medical struggles, but how often do you hear about the struggles families with other children face,” Kaitlin Burge said in the Post.
As Courtney Vastine, oncology social worker with Baylor College of Medicine’s Dan L Duncan Comprehensive Cancer Center, explains the journey that lies ahead when one person is diagnosed with cancer is hard and everyone in the family should be informed about it, everyone have to be prepared for it. “The word ‘prepare’ is very important—even before some of these symptoms and side effects pop up—to fully engage the entire family with a discussion about the side effects of chemotherapy,” Vastine said. “If there is weight loss or nausea, vomiting or hair loss, that is often seen with chemotherapy. It is good to mentally prepare the family to fully explain what it may look like. That way, when these symptoms occur, family members won’t be completely shocked or taken aback.”
Burges’ family seems strong enough to go through this journey, of course with the help of thousands of unknown people standing by their side via social media. Right now, Beckett is doing well. Kaitlin posts: “Beckett is doing well. He is getting chemo nightly in a pill form and then he gets another one once a week and another one once a month. He gets three-to-four chemos a month. He takes an antifungal. We added it up. At one point, he is taking 10 to 12 pills a day.”
Kaitling takes and posts the photos almost every day. She shows the world many things, she shows us what children cancer means for everyone. She wants to always remember this unpleasant chapter of Beckett’s and Burges’ lives, she wants to document it and keep it in her heart as well as share it to the whole world. “I told myself way before I made Beckett’s Facebook page that I was going to document this chapter of his life in case he ever wants to know about it,” his mother said. “I took pictures that were—I guess, painful to the public eye—so he could see them as he got older.”
“I want people to know that these families are not alone. There are so many families fighting the same battles, going through the same side effects,” Kaitlin Burge said. “It is hard, but they will get through it. Post the good, the bad and the ugly because people need to see it. I feel like it is the only way to get the awareness out there.” Kaitlin Burge says.