To raise awareness and to give hope, we are sharing the journey of an amazing family. The Ebanks family has had their share of upside-down, inside out and then some. This is story of their warrior princess Skyler “Mimi” Ebanks!
Mimi’s Story: Her Strength, Our Faith and Childhood Cancer
Her birth on May 31, 2013 brought so much joy in our family’s life. She was beautiful and perfect in our eyes until five weeks later, our lives changed forever. She presented clinically with hydrocephalus and the pressure caused seizures, sun-downing and excessive sleeping. On July 12, 2013, a large tumor engulfing the right-side of her brain was seen at HSA Georgetown Hospital. We immediately flew her to Miami Children’s Hospital for an eight-hour surgery which removed the brain tumor with the size of an adult-fist our 6-week-old baby. She was diagnosed with Anaplastic Ependymoma, a rare form of brain cancer common in children. After few weeks in ICU, we came back home shattered and filled with uncertainties of the future.
A residual tumor was seen on her routine monthly MRI scan three months after the first surgery. Dr John Ragheb, an amazing pediatric neurosurgeon, believed that another resection was needed. We sought second opinions from hospitals specializing in pediatric neuro-oncology. Then we decided to go to St Jude Children’s Research Hospital in Memphis, Tennessee for a promising clinical trial. She had her second brain surgery in Memphis at 5 months old followed by cocktails of chemotherapy for 6 rounds. The treatment was brutal but her strength was extraordinary. She endured countless of pokes all over her tiny body, several bouts of infections, several minor surgeries, numerous imaging/scans and endured the side effects of chemotherapy. She lost her hair and her appetite. She lost significant part of her hearing. She has overall left-side weakness. But through the difficult times, she still smiles. We came home on her 1st birthday with a g-tube, a pair of hearing aids, a full-pack rehabilitation plan and a brand new hope.
We went back to St Jude after a year to do a 2-month intensive rehabilitation program. She did daily physiotherapy, occupational and speech therapies. We continued the rehabilitation at home, albeit no longer intensive, through the Early Intervention Program. Due to her neurological trauma, she has global developmental delay. She has been challenged in many respect. But she continues to be a happy child. She continues to thrive.
Childhood cancer changed us to the core. It took so much from us and brought heartache and pain. We witnessed life and death for years. We get anxious with her scans because that one scan could change our lives again. We cried rivers of tears. But we learned so much about life. We gained new families and friends. We saw compassion and kindness from our community and from strangers all over the world. We became advocates of cure and care for childhood cancer. We exercised our faith and learnt to live passionately. We saw miracle and we trust God’s plan for her. We were humbled and loved. Above all, we celebrate every day because every day is a gift.
On September and always, we are reminded that God has blest her immensely. She had been in remission with no evidence of disease since her treatment on 2013. In July 2018, she hit the 5-year survivorship. She will continue to have an annual brain scan and follow-up at St Jude’s for the rest of her life. But she continues to thrive. She is a happy girl with a very charming personality. She started at Lighthouse School this term (September 2018) and she loves it. She is soaring high. We are hopeful!
Mimi Ebanks is now 5 years old. She is a childhood cancer survivor.
