Avalon (Ava) Kozak-Baumgartner says she has “bad blood.” At just 2 years old, she already understands that her blood is the reason for her frequent trips to the hospital, her hair loss, and her daily medications.
Ava has acute lymphoblastic leukemia (ALL), a cancer of the white blood cells. It is the most common type of leukemia diagnosed in children. Ava will spend the next two years of her young life fighting ALL, but her prognosis is good.
Ava’s story began in July 2010. She had just celebrated her second birthday with her parents, Ashley Kozak and Marcus Baumgartner, and her older sisters, Lexi and Caymen. In the weeks after her birthday, the family noticed that Ava was not herself. She was tired, cranky, and pale. They visited their pediatrician who conducted a series of blood tests. The pediatrician referred the family to Martin Johnston, M.D., for further testing. Johnston is a pediatric oncologist at The Children’s Hospital at Memorial University Medical Center in Savannah. The Kozak-Baumgartner family drove from their home in Hinesville to see him.
On August 3, after more tests, Johnston delivered devastating news – Ava had leukemia.
“Our world was turned completely upside down that day. We’d had such little time to get to know her. We felt we needed more time with her. We were heartbroken,” says Kozak. At the same time, she had no intention of giving up.
“I felt that, at that time, I could not fall to pieces. I had a fight ahead of me and I was gearing up for a battle.”
There was a bit of good news. Thanks to research and advances in medicine, ALL has a very high cure rate in children. In fact, Johnston told Kozak and Baumgartner that his own child had battled leukemia at age 3. That child is now in college.
Kozak and Baumgartner felt an immediate connection with Johnston and chose to receive treatment at The Children’s Hospital at MUMC. Under Johnston’s direction, Ava would begin an intense, 26-month chemotherapy process.
Ava was immediately admitted to The Children’s Hospital. Over the next six days, she had a biopsy, a spinal tap, and surgery to place a port in her chest where chemotherapy drugs could be delivered. She also received her first dose of the potent chemo drugs. She would receive a dose every week for about six months. After getting her first dose, Kozak and Baumgartner took Ava home to rest and recover.
“We were thrilled that we were able to go home so quickly. The doctors realize that kids do better in their own environment. I was very impressed that they realize that,” says Kozak.
Unfortunately, the chemotherapy left the normally active 2-year-old exhausted and listless.
“There was one point where I was looking at Ava, talking to her, and she was somewhere else. She just stared past me. I remember thinking, ‘Did we do the right thing? Should we be treating this so aggressively?’” says Kozak. She found herself dreading the return trip to Savannah for the second round of chemo. The family wondered how they would make it through two years of treatment.
“Going into this kind of thing, you have no idea how you’ll do it or how you’ll get through it. But you just find a way because you have to,” says Kozak. As parents, they made it their priority to protect Ava’s mental and emotional well-being. They worked hard to keep their daughter’s world as positive and stress-free as possible.
“The hardest part of her life at age 2 should have been choosing which crayon to color with first,” says Kozak.
The family has no relatives in the area, so they relied heavily on friends. They also grew very close to the child life specialists in The Children’s Hospital at MUMC.
The night before the third chemo treatment, Kozak noticed a bruise forming on Ava’s chest, near her port. Her mother’s instincts told her that something was not right. By morning, the bruise had grown and was turning black. Kozak took Ava to The Children’s Hospital to have the bruise examined. The treatment team could not determine a cause for the bruise, and they recommended giving Ava her chemotherapy, as planned.
But back at home, the bruise evolved into an open wound on Ava’s chest. The family rushed their little girl back to Savannah to see Johnston. He quickly sent Ava to surgery to have the port removed. The doctors could not find a leak in the port and were never able to determine what had caused the wound. To repair it, Ava had to wear a vacuum assisted wound healing device, called a wound VAC. She also had a skin graft in which skin was removed from her inner leg and placed over the wound. Her port was replaced with a portable catheter, called a Broviac line. Even while going through wound treatment, Ava continued to receive weekly chemotherapy to fight the leukemia.
After her first full month of chemo, Ava had a biopsy to see if the treatment was working. Kozak was with her daughter in the recovery room when her cell phone rang.
“It was my husband. Dr. Johnston had just told him Avalon had gone into remission! The nurses and I all had a little celebration right there. We needed to hear that,” says Kozak.
The chemotherapy was working, but the family still had a long journey ahead of them. Over the next six months, Ava continued to receive weekly treatment. She had problems with two Broviac lines and eventually surgeons implanted a new port in her chest.
Kozak and Baumgartner juggled the task of driving Ava back and forth for treatment, caring for her, caring for their other daughters, while also maintaining work, school, and their household. They learned to take one small step at a time.
“I like to plan. I’ve had to adjust and just take it one day at a time. I’ve learned to start each day fresh and to look for the silver lining. I try not to dwell on the negative,” says Kozak.
In February 2011, Ava entered a new phase of treatment called “delayed intensification.” It is perhaps the hardest phase of all. For two weeks, Ava received chemotherapy four times a week. At the same time, she was battling a cold virus that made her body even weaker. Ava’s hair fell out, and she spent much of the time between treatments lying on a sofa, unable to play or interact with her family. One evening, her fever rose rapidly and Kozak and Baumgartner rushed her to Savannah. Several resident physicians were standing by, waiting for them. They cared for Ava for the next 14 hours, until she was well enough to return home again.
It was a long two weeks, but the family made it through. Now, Ava is in the “maintenance phase” of treatment. She’ll receive chemotherapy once a month for the next 20 months. It is still a challenge, but with less frequent treatments, the family can begin to resume a normal life.
Ava’s hair is growing back and she is behaving like an active 2-year-old again. The family is confident that Ava will fully recover and remain in permanent remission.
“It has always been our hope that in sharing Ava's story, it would help someone else. We have received such support throughout this process and we feel very strongly about paying it forward in any way we can. You'd be hard pressed to find a more passionate group of people than the staff at the hematology/oncology clinic (at MUMC), who go so far above and beyond for their families,” says Kozak.
Kozak and Baumgartner look forward to watching Ava grow up, go off to college, and pursue her dreams – cancer free.