A Milestone Like No Other
Isabelle Wagner with her neuro-oncologist, Paul Fisher, MD
But one thing sets her apart. On February 10, 2011, Isabelle passed the five-year anniversary of a lifesaving surgery at Packard Children's to remove a malignant, golf-ball-sized tumor from her brain. It's a significant milestone in a journey that included 14 months of chemotherapy and radiation, and still requires regular brain scans to ensure the tumor has not returned.
"It's fantastic," said Isabelle's dad, Derek. "And yet there's a bit of holding back, the feeling that this isn't over."
A generation ago, few patients with Isabelle's diagnosis of medulloblastoma made it to the five-year mark. Today, more than half survive, though reaching this landmark does not mean their journey is finished. Isabelle still faces the risk of late-appearing side effects from the treatment she received – a legacy of the delicate balance her doctors faced between killing the cancer and minimizing harm to her developing brain. And her parents, Derek and Heather, are still working to maintain equilibrium between helping their daughter enjoy her childhood and survive a life-threatening illness.
Excising the TumorIsabelle's medulloblastoma, a tumor at the base of her brain, was discovered in an MRI a few months before her second birthday. Isabelle's pediatrician requested the scan after the family had experienced several months of seeing her go gradually downhill. The little girl was vomiting frequently and regressing developmentally, forgetting words she had already learned.
When Isabelle's tumor was identified, she was immediately scheduled for surgery with renowned pediatric neurosurgeon Michael Edwards, MD, who is chief of pediatric neurosurgery at Packard Children's. Even in the two days between the MRI and her surgery, Derek and Heather saw Isabelle decline further, suffering severe pain.
"We started living life in segments of time," Derek said. "Things changed by the minute in those first couple of days, and we just lived for the next few minutes."
Derek and Heather sat down with Edwards so he could explain the planned operation. After he described the procedure, he asked if they had any questions.
"We didn't know what to say," Derek recalled. "Dr. Edwards said, 'Well, you guys are in shock right now, so let me ask the questions that you should ask, and I'll give you the answers.' And he walked us through everything and set expectations for us. It was amazing."
The next segment of time that stands out in the Wagners' memories is the eight-hour wait during Isabelle's surgery.
"The surgery went very well," Edwards said, noting that the team was able to remove all of the visible tumor. "She came out without significant neurologic deficits."
After surgery, Isabelle began improving right away.
"Instantly she was in better shape," Derek said. "You could tell that she wasn't in the same kind of pain."
"In the hospital, she cracked a joke for the first time ever," Heather said, recalling her amazement at the transformation that Isabelle went through once the tumor was gone. "Every day she would have at least five new words."
Targeted Follow-UpOne month after surgery, Isabelle began a course of chemotherapy and radiation designed to prevent the cancer from returning. She was part of the first group of young medulloblastoma patients in the world to receive radiation only at the site of the tumor – a departure from the previous standard of irradiating the whole brain and spinal column.
"We wanted to tailor her treatment such that we could cure her but also not devastate her," said Isabelle's oncologist, Paul Fisher, MD, chief of neurology at Packard Children's. The hospital’s active role in clinical trials often allows his team to offer patients groundbreaking therapies, Fisher said. In many cases, this means the Packard team is working to achieve the best balance between saving the child's life and minimizing long-term effects from heavy-duty radiation and toxic anti-cancer drugs.
In Isabelle's case, the new therapy spared her brain function. Young children who receive radiation to the entire brain and spinal cord inevitably experience significant developmental delays.
"Isabelle really is in the vanguard of lesser treatment to create better long-term outcomes," Fisher said, noting that the treatment she received is now widely used.
Throughout the chemotherapy and radiation, Fisher and his team partnered with Heather and Derek to make sure they knew what to expect. They also worked to plan her treatments around other important events in the family's life, such as the birth of Isabelle's brother, Ryan, in the summer of 2006.
"We are just super grateful for all our doctors," Heather said.
"They're amazing people," Derek added. "Not only do they have to be really good doctors and nurses, they have to be great with kids and great with parents. That was a big deal for us."
Though she will continue to be monitored for any long-term complications, Isabelle is doing extremely well.
"She is – gosh, she's thriving," Fisher said.
Heather and Derek certainly agree. They are thankful to be enjoying every minute of Isabelle's ordinary adventures – tree climbing, mud pies and all.