September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Amy Aldridge
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 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, my husband, 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. We elected to try Plan B - Dr. Burzynski’s antineoplaston treatment, instead. 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, kicked in the teeth. But I had plan C – a brilliant pediatric neurosurgeon at Stanford, Dr. Michael Edwards. He asked 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 the sound from my memory.
There were nearly 800 people at Sahara’s memorial service. Many people spoke; we all cried. I read aloud a note that I’d received from one of her friends. It said that because of Sahara, she stopped cutting herself. Sahara had talked her through some really hard times, and she encouraged her. I didn’t know about this, but it was so like her to try to help others. That was our Sahara. She was love, she was joy, and she was hope, bundled into a bubbly, vivacious, laughing little girl. The depth of her loss is infinite.
After a period of time, we decided that we were really not finished being parents yet, and that we were ready to have another child to love. Not to replace Sahara, as no one could, but to give a home to a child that would need one, and to share our lives and love with that child.
In September, 2010, we adopted an amazing baby boy who brought light to where there had been much darkness. Sahara’s love shines brightly through his big blue eyes. He has quite literally made life worth living again, and we are so grateful for the opportunity to be his parents. People say he looks like Sahara, and they are right. It's uncanny sometimes. He has her mannerisms and wicked sense of humor. We like to think that she hand-picked him just for us. What a blessing!
Since Sahara’s death, we have channeled our grief into research fundraising, and have raised over $100,000 since 2007. Our annual Hoops for Life 5K has grown into the largest in our area, and benefits the Pediatric Brain Tumor Research Program at Stanford University.
This year, motivated by the efforts of Laura Luterewych and Sheila Quirke in Illinois, I worked with Missouri Sen. Wayne Wallingford to pass Sahara’s Law. This law established a check box on the Missouri state income tax return form, allowing taxpayers to donate $1 or more of their refund to the Pediatric Cancer Research Trust Fund, with all proceeds going to CureSearch for Children’s Cancer. It is my hope that other states will recognize the need for greater research funding and pass similar legislation.
If you would like to read the full account of Sahara’s battle, you can visit her blog. 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.
In a sea of pink, it’s very hard to find the gold. Please show your support for Children’s Cancer Awareness Month in September. Thank you, MTM, for giving cancer parents a voice, and for being such an amazing advocate.
If you're looking for all of the posts in the Childhood Cancer Stories: The September Series, you can find them catalogued HERE.
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