Leah’s first surgery at Children’s was on December 23, 2011. That is when she had a shunt put in to relieve the pressure that was on her brain, a port was placed under her left arm so she could receive various meds and have blood drawn, and a neurosurgeon biopsied her tumor. The initial biopsy revealed that Leah had a low grade glioma. After she was given a few days to heal from the initial surgery she began a chemotherapy regiment consisting of vencristine and carboplatin. She showed considerable improvement during her ten weeks of chemotherapy.
However, after 12 weeks an MRI revealed “nodules” in her ventricles and “sprinkles” in her spine. Everyone, including her medical team at Children’s was shocked due to the noticeable improvement she had shown over three months. Therefore it was decided a second surgery should be done to biopsy her tumor in order to provide her with the best treatment moving forward. The second biopsy revealed that the tumor contained both low-grade and high-grade components. With this new information, Leah’s oncologist felt that it would be best to begin a more aggressive treatment. Leah began a regiment of 30 days of radiation at Northwestern and a chemotherapy pill that she takes at home. Once the radiation is over, she will rest for four weeks and then have another MRI. The second surgery was more aggressive, as her surgeon’s objective was to biopsy pieces of the tumor closer to the brain stem and Leah has had to receive physical therapy services since in order to strengthen her left side and get back to walking as she did before surgery.
Leah’s hair thinned during the initial round of chemotherapy, however the radiation has caused all of her hair to completely fall out. She has a wig, bandanas, and hats to try to make her feel more comfortable. But true to Leah fashion, she has never once complained about losing her hair. She has witnessed the other children at Children’s Hospital without hair many times and told me that they are “pretty.” Her kindergarten teacher has been like a second mother to Leah. She bought each student in the class a bandana and and every Thursday is ‘Bandana Day.‘ Her kindergarten teacher has talked to the students about Leah, because Leah looks different now (without hair) and is walking different since her most recent surgery. This has helped ease Leah’s fear of going to school and have her classmates ask her questions. Also, talking about things with Leah and making her aware of what is going on has only helped her with the situation she is facing.
Communication is so key. When we first began this journey, we told Leah she had a boo boo in her head and we had to get it out. I told her it was not going to be easy to get the boo boo out and there was going to be things she wasn’t going to want to do, but we simply had no choice. I have been forced to answer questions no parent should be faced with, one being, “Mom, is this the end of my world?” My husband and I have chosen that no matter what, a six year-old does not need to know that this condition is life-threatening. Leah’s world should be a positive place, she has enough to deal with. She now knows that she has a brain tumor because the cells in her body made a mistake and she wants to educate others on healthy brains. She still has many questions and if we can’t answer them, her doctors at Children’s and at Northwestern give her the answers she needs. Anyone that knows her, knows she is positive and confident. She has a unique spirit that has not been broken by this situation.
The amount of support we have received from people has kept us going, especially on those most challenging of days. Leah is extremely comforted by prayer and knowing that this is a journey of healing. The cards, quotes, food, and acts of kindness are appreciated more than anyone will ever know. She and we feel so fortunate to be a part of so many wonderful communities, communities that have come together to support a special child on a journey that no child should have to endure. Please continue to keep Leah in your prayers.
Shannon Anderson (Leah’s mom)
I wrote ‘Leah’s Story’ in April of 2012, shortly after her tumor had been biopsied for a second time. It was at that point we realized Leah’s tumor was not benign as we had been told in December of 2011, but composed of both low grade and high grade parts. Leah had an MRI in June of 2012 and a significant portion of her tumor was no longer there. However, shortly after her 7th birthday in September of 2012 her tumor began to come back. During this time, Leah began first grade at Onahan and truly lived her life. She was on two different clinical trials and her hair had started to grow back. In early December we took Leah to Lurie Children’s Hospital for the last time. Her tumor hemorrhaged and we knew her body had suffered enough. We, along with friends and family, said goodbye to Leah, our precious first born on December 12, 2012. In Leah’s honor, we have chose to partner with the John McNichlolas Pediatric Brain Tumor Foundation and create Live Like Leah.