Alice’s Story
When our daughter, Alice, was 10 months old she woke up from a nap with a head tilt. We took her to the hospital thinking she had a neck infection. After many tests a few days later we were told she had a brain tumor in her cerebellum. After Alice's biopsy it was confirmed that it was a growing tumor and we needed to prepare ourselves to the fact Alice may need treatment through most of her childhood.
We were put on the watch and wait protocol. This meant Alice needed an MRI every 3 months to check the growth rate of the tumor. Every day and night was spent worrying and looking for signs the tumor had grown too much - does she have a headache? She just fell over - does that mean the tumor is effecting her balance or is it just because she is 1 or 2 years old?
During this time I started looking for books for Alice. It is so important for children to see themselves in the books they read. I was shocked to find there was not that many. Alice was now at an age where she loved Disney Princesses and her friends always talked about who they looked like. I started to worry about this and how it would effect Alice if she lost her hair during treatment. This inspired me to create the book series "The Princess Lily Series" so our children can see themselves represented in books.
Princess Lily is on chemo, loses her hair and goes through what a lot of our children do, but in an enchanted world full of adventure.
The timing of the first book being released was perfect. Alice was about to turn 3 and had just started chemotherapy and a trial drug - a treatment plan that she would be on for 17 months. Alice was so excited to see that the princess had a port too! I decided to self-publish my books, this way I am able to donate was many books to Children's Hospitals and cancer families worldwide.
Alice has now been on chemotherapy for 7 months and she is really struggling. She does not really have any physical side effect except the chemotherapy makes her skin itchy. Mentally though it is taking its toll. Alice is scared of the hospital and will throw up from nerves just stepping foot in it. 4 nurses have to pin her down to access her port - every week. She has terrible nightmares every single night.
Having a child with cancer is hard on the whole family. The constant waiting for tests results, waiting for treatment to start and enduring the side affects both physically and mentally. Alice has been diagnosed with PTSD - she is only 3! I have no idea how this will affect her in the years to come. To be honest I feel like we all have PTSD.
With my books I hope to start advocating more for our children and spread awareness of how this can affect their mental health. If I can help Alice and other children with cancer feel better about what they are going through then all my sleepless nights will be well worth it.
Resources
To learn more about The Princess Lily Series, please visit: sarahbankuti.com
