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By Victoria and Jon Levi
Fredericksburg, Va. 

In April 2006, at just sixteen months old, our daughter, Mackenzie Levi, began suffering from chronic ear infections. Each time that we thought she was finally over one, she would get another. And every time she would get an infection, she'd start to stumble and fall, which was our only clue that she had an infection. We went back and forth to the pediatrician and to the ear, nose and throat specialist, and nothing they prescribed seemed to work. She had tubes put in her ears in July, but they didn’t stop the infections. 

Over Labor Day weekend 2006, we noticed something was wrong again. But this time, instead of just the stumbling when she was walking, she started swaying and stumbling backwards when she was standing still. She also started rubbing the back of her head. Her regular pediatrician wasn't in that day, so we saw another doctor in the practice, Dr. Whitney Sprinkle. Her ear was infected again, but she didn’t feel it was a bad infection. When I explained the other symptoms, including the falling and rubbing of her head, Dr. Sprinkle suggested that we run an MRI to rule out anything else. It seemed so extreme to us, but we agreed to it. We figured it would put our mind at ease and we could focus on finding the underlying cause of the ear problems. In the back of our minds we thought that maybe the infection had spread to her brain or that the ears were damaged from all of the infections. We never expected what would come next.  

Standing in the MRI suite with Mackenzie the next morning, we just kept hoping and praying the image would come back either clean or with something easily treatable. That wasn’t the case. The phone call we received two hours later was every parent's worst nightmare. There was a growth, quite large, in the back of the head, pressing against the brain stem. In addition, the growth was blocking the ventricles, which was causing fluid to back up in the head and was pushing her brain in places it shouldn’t go. She needed to see a pediatric neurosurgeon and needed to do so quickly. Dr. Sprinkle offered us a few options for excellent care and, in the shock of it all, the only thing we could think to ask was, “Where would you take your kids?” Her answer was VCU Medical Center and Drs. John Ward and Gary Tye. Two hours later we were on our way to Richmond. They had "good hearts and good souls and would take care of us," she said. And she was right.

Mackenzie with her younger sister, Grace. Mackenzie was diagnosed with medulloblastoma three weeks after Grace was born.

We met with Dr. Tye and JoAnne Tillet soon after we arrived. They showed us the scans, and we just broke down at seeing this huge white spot in our daughter’s head. They planned to operate a week later and admitted Mackenzie right away for observation, blood work, a spinal MRI and a course of steroids to shrink the swelling. We hadn’t thought far enough ahead and so hadn’t packed for a hospital stay. But we had wonderful friends who lived a few houses from our house, and they came all the way to Richmond that night to bring us enough stuff for a few days.

A week later on September 13, at barely 20 months old, Mackenzie underwent her first of two surgeries to remove the peach-sized tumor. The first surgery resected 95 percent of the tumor, and a second surgery a week later was able to get the rest. The day after her first surgery she started having seizures because of low sodium levels. The seizures gradually worsened over the course of a few hours, and the pediatric fellow was concerned about protecting her airway. He rallied for the attending to put her back on a ventilator, and 20 minutes after they had sedated her and had her on one, she suffered a grand mal seizure that lasted an hour and 45 minutes. Drug after drug was given to stop the seizure, but nothing was working. They were running out of options, and we knew the situation was dire. Finally, IV Kepra was given, which had only been approved for IV use a few weeks before, and it stopped the seizure. It would be a few days before Mackenzie emerged from the medical coma and slowly started her recovery. 

Mackenzie was diagnosed with medulloblastoma, a form of brain cancer. Her follow-up care was put in the hands of Dr. Asadulla Khan of VCU Massey Cancer Center and Children’s Hospital of Richmond at VCU and the medical team in the ASK Hematology-Oncology Clinic at VCU. Her treatment plan included six cycles of chemo: three at regular dose and three at high dose with stem cell rescue. This was a new protocol that had showed great promise in a recent study and significantly upped her chances of being cancer free at the two-year mark. It was also less toxic to her body. The only downside was that the last three cycles had to be given in the Bone Marrow Transplant (BMT) Unit at Massey and she needed to stay in the unit each time until her counts recovered (usually 10 days to three weeks after chemo finished). For the high dose cycles, she would also receive a stem cell rescue to help her system recover faster and keep her on track with the protocol timelines. She underwent the first three cycles starting in October and they were 21 days apart. She finished over Thanksgiving weekend and began her first high dose on January 2. After 18 days in BMT, she was finally set free, having experienced minimal complications from the chemo—a big surprise to all of the doctors. Actually, she did so well—eating and drinking the whole time and never developing a lot of the horrible, usual side effects—that they allowed her the chance to stay at the Hospitality House after receiving her chemo for the fourth and fifth rounds. She was admitted to BMT for four days for the chemo and stem cell infusion and then released to the Hospitality House until her counts recovered. Her last round finished on March 4, 2007. Mackenzie repeated MRIs every three months for the first two years, and scans were very slowly spread out after the third year. On April 15, 2014, she finally graduated to yearly head scans. 

Mackenzie amazed the doctors at every turn. She never gave in to the cancer and just acted like a normal 2 year old for most of her treatments. She wanted to play and explore and didn’t give in to the notion that she shouldn’t have that much energy. She was in constant motion, even in the BMT Unit, walking the halls at all hours and wanting to play. The nurses loved to see her roaming the halls, stethoscope in hand, acting like a little doctor on call. She was the exception to every rule there was for chemo treatments (with the exception of her hair falling out), and everyone loved to see her. And she loved to see everyone. She even got to the point during the Hospitality House stays that she didn’t want to leave the clinic to go back there. She wanted to stay in clinic and be around people, even though she was supposed to stay in her exam room. But again, the clinic staff really tried to make her as happy as they could. They tried to help keep her occupied and found her favorite snacks.

Mackenzie turns 10 this Christmas. It’s been eight years since her diagnosis. We never realized before her diagnosis that September was Childhood Cancer Awareness Month, and now that month is just filled with memories of those early days of her cancer journey: of being introduced to the team at VCU that would save her; of watching our baby undergo pokes and prods and scans and hospital stays; of her being tethered to an IV pole for hours and days at a time and finding ways to play around it; of wondering how we were going to get through it all and then watching her lead the way. When you think of all the things that could have gone wrong with her surgeries and treatments, we were blessed that everything went right and that she exceeded everyone’s expectations. But then again, that doesn’t surprise us—she’s SuperGirl. And she’s our hero.

Written by: Massey Communications Office