Updated: Sep 24, 2021
Written by her mother, Nini Hooks
Zamirah "Zee" Hooks was born January 9, 2014, and on September 6, 2014, Zee was officially diagnosed with stage 4, high-risk neuroblastoma at seven months old. After being diagnosed, she underwent almost a year-and-a-half of various treatments. This included several surgeries to remove tumors, chemotherapy medicines, radiation therapy, a stem cell transplant, and antibody/immunotherapy medicines. Zamirah was declared in remission in March of 2015, but her treatment regimens were far from over, lasting until December 2015.
Once treatment was over, Zamirah still had to undergo tests and imaging that eventually became six months apart. It wasn’t long until we received another negative report from her oncologist that her scan showed a concerning spot on her liver. By November of 2017, the spot had doubled in size and had to be removed immediately. Zamirah went through seven months of chemotherapy with antibodies. Shortly after, she started radiation therapy for another spot that reappeared on her tibia. She went into remission again, with no evidence of disease as of August 2018.
Zamirah relapsed again for the third time in December of 2018, this time very aggressively in several bones throughout her body.
She underwent chemotherapy and eventually began a systematic radiation treatment called MIBG therapy. It became evident that these treatments weren't working. The cancer ultimately took over Zee's little body until it could no longer stand it. She went to heaven on April 7, 2019.
There were many hard moments during this journey for our family. The entire journey was difficult, but one of the hardest parts was the effects of treatment. At one point, during her first diagnosis, the antibody therapy had caused so much fluid retention. We knew that that was a side effect and expected her to be a little swollen and puffy because of it, but the fluids ended up building up in her lungs, causing her to lose a lot of oxygen. She had to be sent to ICU to be put on an extensive form of life support called ECMO. (ECMO stands for extracorporeal membrane oxygenation. Essentially, it pumps and oxygenates a patient's blood outside the body, allowing the heart and lungs to rest.)
We were able to find hope from other families and the various organizations that would come and support us, such as Lighthouse. These organizations provided help with food, bills, vacations, etc. (things that may have otherwise been insufficient or overlooked).
During this process, our family kept our faith. We prayed constantly for our family—and other families who had to endure childhood cancer. We prayed for our marriage and our bonds with our children. We sought help and support from our loved ones near and far and kept them close. That’s what I encourage other families facing childhood cancer to do as well.
The Hooks Family will be joining us on our annual Sunrise Retreat this month, a bereavement experience offering rest, restoration, hope, and joy for families who have lost a child to cancer. In looking ahead to their retreat, Zee’s mother, Nini, shares their hopes for this time: “We are so excited about it, under the circumstances. When we went on a Lighthouse Family Retreat with Zamirah in her last year of life, we connected with other families in similar situations, prayed a lot, learned a lot, and met so many wonderful volunteers (who did our laundry and watched our kids by the way!). For the Sunrise Retreat, (while we wish it was for different reasons), we are hoping to do the same: connect with other families and parents who can relate to our current process of grieving— and we want to be there for them as well. Sometimes, that’s all you need.”
During the month of September, we will be sharing stories written by some of the families who will be attending our Sunrise Retreat this month. We hope you will join us in praying for these families who have endured unimaginable loss, that God will use the week away with their family and Lighthouse volunteers to bring healing and hope.
Our fundraising goal for Childhood Cancer Awareness Month is $30,000, because that’s what it takes to put on a Sunrise Retreat. From meals and gifts to Parent’s Night Out, sibling activities and nights of remembrance, every single dollar we receive in September is going to be invested into providing a restorative experience for families who have lost their child to cancer. When it comes to our growing Sunrise Retreat program, more funding means more families served. Whether you can give $1, $100 or $1,000, please join us in honoring the memories of the children we’ve lost by providing support for the families who will never forget them. Visit this page to learn more or donate.