Lightning struck our family in March 2016 when Alexandra was diagnosed with brain cancer. To say “lightning struck” sounds like a colorful exaggeration, but it’s a very real comparison – roughly 400 people a year in the U.S. are struck by lighting and approximately 400 children a year in the U.S. are diagnosed with medulloblastoma.
At the beginning of February 2016, when Alex was 8 and in 3rd grade, she started vomiting frequently. Initially, we thought it was stomach flu. As the frequent and intense vomiting continued for several weeks with no apparent cause, an MRI was ordered. On March 2, her pediatrician called within hours after the MRI was performed with the devastating news that Alex had a brain tumor, located in the right cerebellum. We were told to pack our bags and head to Kaiser Los Angeles for brain surgery the next day.
On March 3, Alex had neurosurgery and we were fortunate that the entire tumor could be removed. The pathology report confirmed our worst fears – the tumor was cancerous. Medulloblastoma is an aggressive form of pediatric cancer, and we were presented with no alternatives but to move forward with treatment, which entailed whole brain and spine radiation, followed by chemotherapy. She would not be allowed to attend school during treatment because her immune system would be completely wiped out.
Alex spent little time feeling sorry for herself. One of the few times she cried was on the day we were first told that that the tumor was cancerous and she found out that she would miss the first day of 4th grade. She tearfully stated, “but I’ve never missed the first day of school”.
A central line was implanted and, four weeks after neurosurgery, she began 6 weeks of radiation treatment. While radiation is proven to be the best treatment to destroy medulloblastoma cells, the physical and cognitive consequences are truly horrific and will remain with her for the rest of her life. Worst of all are the long-term cognitive effects, as whole-brain radiation causes progressive deterioration in those brain functions most of us take for granted: concentration, memory, computation and analysis, planning, etc. Additionally, her pituitary and thyroid glands were destroyed.
The final phase of treatment was approximately 10 months of chemotherapy. Each cycle of chemo required a hospital stay to manage the toxicity of the drugs on her organ systems. In addition to hospital stays for chemo treatment, there were numerous hospital stays due to fever or sickness.
During treatment, Alex could have taken a year off from school, however, if she did so, she would return to school a year behind her class and friends. The doctors left the choice up to us. It would certainly have been far easier to take the year off, however, Alex was adamant that this was not an option - she wanted to stay with her class. So she completed online coursework until she could return to school. We met with her 4th grade teacher and found that the online program didn’t entirely track with the work being done in the class, particularly in math and reading, so Alex did supplemental math lessons and reading in addition to the online assignments. Because it was impossible to concentrate on schoolwork at the hospital or clinic, she had to utilize almost every day that she was home to keep up with the assignments, meaning weekends, Thanksgiving and Christmas breaks, etc. – every day, Alex would spend time working on her assignments with a fierce determination to keep up with her class.
Needless to say, Alex lost her hair; she also lost over 25 pounds and was weak and exhausted all the time. She had numerous red blood and platelets transfusions and injections of a medication to stimulate white blood cell regeneration. By the end of treatment she also experienced peripheral neuropathy which causes numbness in hands and feet and difficulty walking. Fortunately, this was a temporary side effect from one of the chemo drugs that went away a couple months after treatment ended in March 2017.
Alex’s central line was removed at the end of March 2017 and Alex returned to school with her 4th grade class on April 10. The doctors were amazed that she wanted to go back to school so soon, but Alex would not be deterred and was determined to return to school. Her blood cell counts were high enough just before April 10 so return to school was authorized. Reentry was difficult due to the peripheral neuropathy and fatigue, but Alex was determined. The first few weeks, she could only make it through morning break. Then she was able to extend her day through lunch time. Finally, the last few weeks of school, she was able to attend for the entire day. She is now in 7th grade and is thriving in school despite the cognitive challenges resulting from radiation and she continues to work hard to rebuild her physical strength.
Through all this, through all the physical pain and sickness, the emotional trauma, and the cognitive changes, Alex has never complained. She has had moments of frustration and moments of sadness, but we have never heard her complain. Alex is determined to overcome the ongoing challenges she faces and to find ways she can utilize her experiences that will help other children who are facing cancer and surviviors facing the long-term side effects of treatment, as well as to inspire people to support pediatric cancer research. Together we can beat pediatric cancer!
