- Published on Monday, 07 July 2014 15:26
- Written by Amy Aldridge
(Excerpted from a story run on ChicagoNow.com in September, 2013)
On July 24, 1994, our beautiful Sahara was born. She instantly became the guiding force in our lives. That girl was our whole world, bright-eyed and ready for anything. As Sahara grew up, it was obvious that she had many gifts. She was patient and kind with younger children, often found with a circle of little ones around her, reading to them, playing with them, teaching them. To her classmates, Sahara was the ultimate party planner, peacemaker, confidante and comic relief. To her teachers, she was a joy to have in class.
Basketball was Sahara’s sport. She wore number 21, and earned the nickname, “Hoops.” She excelled at the game, and could drain a 3-point shot from half court when she was 11 years old. The summer of 2006 began like any other for Sahara, with many activities, travel, and basketball camps. She had experienced a growth spurt that spring, which included growing two inches taller and increasing two shoe sizes. She stumbled occasionally; we attributed it to the rapid changes in her body. We thought she was just goofing off when she would try to eat dinner with her left hand instead of her right. I asked her to please eat properly, and she told me she could not. She would “walk out” of her flip-flops because she could no longer hold them on her feet.
Her dad, Shannon, took her to a WNBA game in Indianapolis, and he was so touched that his girl wanted to hold his hand as they walked – until it became apparent that she needed to do it to keep her balance. That week she started basketball camp. Her coaches said Sahara was keeping to herself, not playing much. We sat in the car outside the gym waiting to pick her up on the last day of camp, and it hit us. Our beautiful girl could no longer walk the way she used to. It was difficult and unbalanced, obviously a struggle.
What the hell was happening?
Sahara had recently gotten braces. We took her in for an adjustment after camp ended. Her orthodontist was working, then paused. He asked her to watch as he moved his finger across her line of sight. He stopped. He motioned us aside. He then floored us by saying, “I’m going to call my friend, who is a neurosurgeon. You need to take Sahara to see him and get checked out. There is something wrong. Her eyes will not track from left to right.” Whaaat? The next day, Sahara had her first CT scan. “There is a mass in her brain stem, and it’s pretty large. I recommend you take her to a pediatric neurosurgeon right away.”
We were thrown into the terrifying world of childhood cancer. Shannon and I were out of our minds with fear, but Sahara, true to fashion, patted me on the back and said, “Don’t worry, mom. I’ll be fine.” On Sahara’s 12th birthday, July 24, 2006, she was diagnosed with a malignant brainstem tumor. The pathology came back as stage 4 glioblastoma multiforme.
In one fell swoop, our healthy, athletic daughter became a cancer patient. We were devastated. We told the doctor we wanted to get a second opinion, perhaps from St. Jude’s. He quite rudely told us not to bother, that they would tell us the same thing. He suggested that we take Sahara to Disney World. That was unacceptable. Unsatisfied with our options, we took her home five days later, and began hashing out a plan.
We took Sahara to the M.D. Anderson Children’s Cancer Center in Houston, where she was placed in a clinical trial. We moved into the Ronald McDonald House, leaving behind our family, friends, school, work, and everything we knew. Months of chemo and radiation withered her once strong, athletic body into a fragile shell. She lost over 30 pounds, lost her pretty hair, and suffered through the sickness, the mouth sores and the exhaustion. We went home at the end of October, hopeful that an outpatient chemo regimen would somehow keep the tumor at bay. It didn’t.
In December, her MRI indicated that the tumor was growing, and the doctor suggested a new round of chemo. Sahara told us she didn’t want to go through it again, and we honored her wishes. Instead, we elected to try “Plan B” – an alternative treatment using antineoplaston infusion therapy. The treatment stopped the tumor in its tracks, with zero progression for over 8 months.
But in August, 2007, an MRI indicated a small area of growth. Once again, we were kicked in the teeth. But we had “plan C” – a brilliant pediatric neurosurgeon, Dr. Michael Edwards, at Lucile Packard Children’s Hospital at Stanford University. He asked me how fast I could get her to California. We arrived two days later. He operated, removing 70% of the tumor. Sahara was the youngest person ever admitted to Stanford’s inpatient rehab. She was their little star, and after a month, she walked again. We took her home on October 25. She started outpatient rehab and was doing really well. We were making plans for her to return to school in January.
We had so much hope.
Eleven days later, on November 5, after a strenuous afternoon of water therapy, we had just gotten her comfortable in her hospital bed, which was set up in our living room. I had to run to Walgreens to get one of her prescriptions refilled. I rushed out the door without kissing her goodbye, which was something I never did. She told her Dad she was going to take a nap.
When I got back, about 20 minutes later, she was gone. Just like that. After 17 months of fighting and hoping and praying, she was simply gone. And I wasn’t with her when she passed. It took me years to work through that guilt. Shannon was in shock because he’d been with her and thought she was just sleeping. There was nothing we could have done. Sahara’s little body was worn out, and her heart simply stopped beating. When the kind men from the funeral home came, they cried. How I wish I had not heard the sound of the zipper as they prepared to take her away. I can’t erase that sound from my memory. It will haunt me forever.
There were nearly 800 people at Sahara’s memorial service. Many people spoke; family, friends, even Sahara’s own personal rock star. We all cried. I read aloud a note that I’d received from one of her friends. It said that because of Sahara, she had stopped cutting herself. Sahara had talked her through some really hard times, and she encouraged her to stop harming her body. I didn’t know about any of this, but it was so like her to try to help others. That was our Sahara. She was pure love, she was joy, and she was hope, all bundled into a bubbly, vivacious, laughing little girl. The depth of her loss is infinite. If you would like to read the full account of Sahara’s battle, can visit her blog at www.saharaaldridge.com. It is a love story, really...one that continues in our lives every day. Every time we encounter the number 21 (which happens frequently), we feel that she's giving us a wink, and letting us know that she's still with us.
The annual Hoops for Life 5K Run/Walk was born five years ago, to honor Sahara’s memory and raise money for research. Our event benefits the Children’s Brain Tumor Program at LPCH, at Stanford University. Since Sahara’s death, we have raised over $100,000 for desperately needed research. Hopefully, a cure will be found.
Please join us on Saturday, July 26, at Kiwanis Park in Cape Girardeau, for the Fifth Annual Hoops for Life 5K Run/Walk! We’ve also added a 1.6 mile Power Walk this year. For full details, and to register, visit www.hoopsforlife.net. Our slogan this year is, “Who are YOU fighting for?” Together, we can make a fight to make a difference in the lives of children with cancer.
Thank you for reading!
Amy Aldridge (mom of Sahara, forever 13)