Family :: One Mother’s Journey

September is Childhood Cancer Awareness month, did you know that? What did I know about cancer in 1993? My grandma had breast cancer a few years earlier, but she was “old”. I adopted special-needs kids; surely my kids wouldn’t have to worry about something like cancer, right? Well, much to the chagrin of the pediatric neurologist who overlooked all the signs, my oldest son, Drew, developed brain cancer. Few people remember that Drew died at age 9 as a result of medulloblastoma, one of many brain cancers found almost exclusively in kids.

Suddenly I remembered a boy named Jimmy dying when we were in middle school. I remember he found out he had cancer when getting a Little League physical.  How wrong was that? Cancer will take the lives of seven children today. Seven — is that one of yours? A neighbor’s? A friend’s?

October 28 marks the 20th anniversary of Drew’s death, just 45 days after diagnosis. Drew would’ve been 29 on September 9. In 20 years the FDA has initially approved only one drug for any childhood cancer. (Source: Kids V. Cancer) There was no real treatment options for Drew with cancer that had already spread into his spinal cord and was always lethal.  It was only a matter of time, we were told.

Drew was a sweet boy who came to me at age 4 1/2, full of amazing hugs and squeals.  He made me a mom and I loved him more than I could ever have imagined!  He had a host of medical problems and labels and was paralyzed on his right side, but made up for it in love.  Drew loved music and squeezing you tight with his left arm, enjoying walking, standing and dancing and even horseback riding.  Drew was just learning to use a communication device when he got sleepier and sleepier until he slept almost 23 hours a day the summer of 1993.

Tests were run and I was told I was just making a mountain out of a molehill.  Maybe it was precocious puberty, maybe I was working him too hard in therapy.  Then I noticed his breathing was changing.  We scheduled a tonsillectomy, but they had problems getting him off the ventilator.  We did some deep stimulation and finally he got off several days later, but I made another appointment with his neurologist and demanded a CT scan.  He patronizingly agreed to get me to shut up.  I didn’t’ care, I just wanted answers; I knew something was wrong.

An hour later, he sheepishly came out with the report that stated Drew had a mass at the base of his skull and there was no way to know what it was, but Drew should be admitted.  We had doctors at two hospitals, so I very politely asked for him to be admitted to our other hospital so that our pediatrician could designate people who would better be able to advise me on how to proceed.

We were blessed with an opportunity to be referred to the neurologist I would’ve chosen for Drew previously, but who would not see all my other kids because he only saw kids with seizure disorders (which only Drew had). That doctor fully examined the scans and consulted with the oncologist, but gave me the news no parent wants to hear. When asked, he told me that if it was his child, because this type of cancer (at that time) was always fatal, and with as advanced as Drew’s case was, he would simply try to fill his days with love and memories. We spent the night in the hospital, consulted with the oncologist in the morning and I informed him of my decision, and then we went home. We spent the last few weeks of Drew’s life making memories, taking pictures, and having people record video tributes to the way that they loved Drew and how he impacted their lives.

Drew tried to take a Make-A-Wish trip to visit his birth mom and beloved foster mom in Virginia for a goodbye visit. It was clear in flight on the way down to Virginia before we got to Atlanta that he was not going to survive the trip, so we turned around and came home on the return flight. A friend from church picked us up at the airport, and Drew died in my arms on the way home from the airport. The kindness of a passenger on the plane ride down allowed his mom to come up for his services, something that really meant a lot to her and our family.

Please, donate your time or money to help fund research for treatments and cures for childhood cancer. Sadly, people do not realize that less than one penny of every dollar donated to the American Cancer Society goes to pediatric cancers. Only about four cents of every research dollar goes to pediatric research.  All the rest goes to adult cancers. Help us increase awareness by spreading the message.  Our kids deserve no less!

Drew (9/9/84-10/28/93) Andrew James Sundsboe

Please join us this month and help spread the word about Childhood Cancer Month.  To learn how you can help and join us go to: https://dandelionmoms.com/2013/09/dandelion-moms-project-kindness-september/

About the Author:

Valerie Maples

Valerie Maples, 51, is a stay-at-home mom. A strong Christian, she has dedicated herself to increasing opportunities for people with disabilities. Five years of college and countless hours of volunteerism in her teens and 20s did not result in the planned medical school or occupational therapy degree, but were rather used and expanded on as she acquired many medical skills. She has adopted four special needs children as well as fostering and providing respite for countless others. For many years Valerie has been a strong advocate in increasing awareness and usage of AAC, augmentative and alternative communication. She has mastered programming multiple platforms of devices and brought voices to children often overlooked. Mother of four, only the youngest, Nichole (20) survives. Enamored with technology and having a strong passion for literacy, Valerie blends her interests with advocacy and awareness.  Valerie and her husband, Doug, have been volunteers with Bookshare for four years. Bookshare makes books print accessible to people with print disabilities (people who are blind, physically handicapped, or severely dyslexic). Central to her beliefs is promoting a greater understanding and acceptance of individuals who may appear different on the outside, but are very much like everyone else. In the end, we all just want to be loved and make a difference in the world.  Valerie and Doug Maples make their home in Tupelo, Mississippi, with their daughter Nichole, as well as two dogs, Belle and service dog in training, Daisy, as well as two African grey parrots, Tango and BB Hope.