Brendon’s tumor was near the brain stem and was estimated at 4-5 centimeters in circumference. This very aggressive and fast growing, cancerous tumor was called an Ependymoma. Those types of tumors only account for about 5-10 percent of pediatric brain cancer. On September 1st, 2006, Brendon underwent an 11 hour surgery to remove the mass, recovering from that risky and intense procedure remarkably well. The surgeon was able to remove the majority of the tumor; only 5% remained. Brendon surpassed the doctors and therapists expectations during long therapy sessions that taught him how to eat, walk and play like a 3 year old little boy again.
A lumbar puncture would later reveal that the cancer had metastasized to his spine as well, meaning that further treatments would be needed to fight the cancer that had now spread. Toward the end of September Brendon began a 4 month course of chemotherapy at Cook’s. Even though the treatment was rough on his little body, Brendon continued to show remarkable progress and as always, had a great sense of humor and zest for life. He lost all of his hair, became very thin and suffered from vomiting, pain and other terrible side effects. It was also determined during this time that he had almost complete hearing loss in his left ear. But despite all of these things, after weeks at Ft. Worth, Brendon was able to return home to Abilene while awaiting another round of chemotherapy.
However, on October 6th Brendon was returned to Cook’s when his blood counts dropped to nearly zero. During the month of October he suffered from terrible headaches, a paralyzed bowel which was excruciatingly painful, and was barely able to leave his room except to walk the halls of the chemo ward after visiting hours. Toward the end of October, after a short visit home, he was able to start another round of chemotherapy. Brendon spent Halloween at the hospital, fighting off evil up and down the halls as the best looking Red Power Ranger any of the doctors and nurses had ever seen!
During the month of November, Brendon continued treatment spending time at Cook’s, The Ronald McDonald House and visits to his home in Abilene. During one visit back to the hospital he was rushed by 2 ambulances and a plane back to Cook’s because his counts had dropped dangerously low. This was a scary night for everyone, but of course terribly cool to Brendon who enjoyed getting to ride with all of the sirens and in the big plane! But for the majority of November, he was not well enough to receive chemo and went almost 4 weeks without a treatment, further delaying the fight. He was able to spend Thanksgiving at home with his family in 2006. At the end of the month, they would head up to Cook’s for more chemotherapy because his counts had improved.
On Brendon’s 4th birthday he was lying on a stretcher in the ER once again, after being rushed to the hospital the night before. A friend was able to come visit him, so he opened gifts and had cupcakes in his hospital room. Now that he was 4, the oncology team felt that radiation would be another weapon to fight the cancer. Prior to his fourth birthday, they felt his development would be severely impaired by intense brain and spinal radiation. But even at 4, the risks were high. So after finishing his chemotherapy in December, Alison would then have to make the difficult decision concerning radiation. An MRI on Jan 11th showed that the cancer in the brain was completely GONE even though the cancer remained in his spine.
After making one of the hardest decisions of her life, Alison consented to the radiation and it was started on February 5th, 2007. It would last 6-8 weeks with Brendon being sedated every day (weekends off) so they could do focal radiation on the brain and full radiation on the spine. During this time Alison and Brendon stayed at the Ronald McDonald House with other family members coming to stay with them when they were able. Even though the first few treatments were rough with headaches, fatigue, nausea and adjustment to the daily sedation, Brendon had a remarkable spirit and continued to make friends wherever he was. He was always laughing and smiling, despite his circumstance. He finished his last radiation treatment on March 19th after 50 straight days in Ft. Worth and 31 radiation treatments. Brendon and Alison returned home to await an MRI in May that would reveal the hopeful success of all these combined treatments.
April was fairly uneventful (medically speaking) for Brendon as he enjoyed being at home and just feeling like a normal kid with his family. Brendon even got to participate in the ACS Relay for Life where he was able to run around the track…just like everyone else. Everyone anxiously awaited the results of the May MRI and were hoping to hear the words “cancer free”.
On May 3rd, Brendon’s MRI would not produce the news the family had been hoping for, but it wasn’t completely bad news either. The cancer was still present in his spine, but had not grown, and there was still no sign of cancer in the brain. The doctors were optimistic, thinking they could reasonably manage the spinal cancer as long as it did not grow. It was determined that they would wait 3 months to see what another MRI could tell them and in the meantime, Brendon could return to his preschool and to the friends he missed so much. His neuropsych testing showed that Brendon’s IQ was high average or superior.
On May 20th Brendon was able to travel to Disney World with his family, including his Papa, Mimi, Aunt Erin, Uncle Joey and Cousin Morgan. The Make-a-Wish Foundation made this trip possible and it was a chance for Brendon to truly be a kid and have a wonderful time after the previous 10 months fighting cancer. The memories made during that trip are priceless to everyone in Brendon’s family. He got to pose with all the Power Rangers (his favorite), rode every ride he wanted, was lavished with kisses by every Princess that saw him (all over his bald little head) and enjoyed a wonderful stay at the magical “Give Kids the World” village.
Upon returning from his trip, Brendon was able to begin attending preschool again in the middle of June. An MRI in August showed once again that the cancer had not grown and that he was stable. Brendon was enjoying school, visits from his family, his hair growing back and everyone was hopeful for the future. Again in October scans showed stability which was again good news. He had even gained weight and was back up to 42 pounds! Alison and Brendon traveled to NC to spend a delightful Christmas with Mimi, Papa, Cousin Morgan, Aunt Erin and Uncle Joey. It was a great time for the entire family and one that will be remembered as the best Christmas in family history by all. Brendon was feeling well, his beautiful hair had grown back, he looked good and as always was the life of the party. Funny, witty, charming, sweet…simply an amazing child all around. The nightmare of the previous 18 months seemed to be in the past as the family celebrated together on Christmas Day.
But after 3 consecutive MRI’s showed no progression in the cancer, the scan on January 2nd would bring the family a terrible shock. The brain cancer was back, this time in the form of two tumors on either side of his brain stem. Alison again was faced with impossible choices in regards to her son’s cancer treatment. While waiting on the tumor board at St. Jude, it was decided that Brendon would begin a clinic trial of chemotherapy at Cook’s Children’s in Ft. Worth. Even though he began this new form of chemo, the cancer continued to grow at an alarming rate. By the middle of February the tumor had doubled in size. After a meeting with St. Jude in March, Brendon was entered into an experimental clinic trial in hopes of slowing the growth of his tumor. He started treatment in Tennessee during the middle of April. St. Jude flew Brendon and Alison back and forth in between treatments so that they could be comfortable in their own home. Unfortunately during the two months that he was on the protocol at St. Jude, the tumor grew significantly so they were sent back to Cook’s because there was nothing more the doctors felt could be done for Brendon in Tennessee.
Faced with the harsh reality that this tumor would progress rapidly, the family planned another trip to Disney for Brendon’s “Last Wish” trip. It was generously funded by a children’s cancer foundation, Clayton Dabney. Again, the immediate family stayed at Give Kids the World and Mimi, Papa, Aunt Erin and Morgan were able to meet them in Orlando. It was again a wonderful trip, but bitter sweet as the family realized this would be their final time with Brendon at his favorite place. Upon returning from Disney on June 24th, Brendon was awarded an honorary black belt at his karate school as people who loved and adored him, watched him show off his skills and unique moves. He was the youngest kid to ever be inducted into the AKA.
On July 5th Alison was married and Brendon was the most handsome ring bearer in history. Shortly after the wedding, Alison, Tony and Brendon’s new sister Amelia took a weekend trip to Sea World, trying to fit in as many good times with Brendon as they could…knowing that time was running out. They enrolled him in elementary school with hopes that he would at least be able to attend for an hour a day. Brendon was so excited about starting kindergarten. Tragically, Brendon would never step foot in his kindergarten classroom.
On July 18th, 2008 Brendon went back to Cook’s because he was unable to empty his bladder on his own. That night, things took a turn for the worse as he suffered severe vomiting, pain and then strong seizures. MRI’s showed that the tumor had now grown up to 5 times the size since the scan in April, just months before. Brendon was virtually non-responsive and was on morphine for pain because there was an increase in fluid that they feared would be unbearable for him. After several days in the hospital, the decision was made to transport him home to Abilene where he would be cared for by hospice.
During his time at home, hospice was able to make him comfortable as he continued to slip away. When his body could no longer process them, he was taken off all fluids. He had many visitors and spent lots of time with people who loved him, including his little dog Cooper who would lay next to him in bed. 20 days after being taken off fluids, Brendon took a quiet last breath in the arms of his mother, early in the morning on September 10, 2008. He was 3 months shy of his 6th birthday.
His mother Alison wrote the following after his passing. “He went peacefully...I was sleeping next to him and was woken at around 0500 by Tony who told me that his heart rate was very slow. I held my baby and just stared at his face, counted every single eyelash, rubbed every inch of his beautiful body and watched him as the breaths got smaller and smaller and the heartbeat faded and faded and his color simply fell from his body, and then eventually he just slipped away. He didn't take any last big breath, he wasn't gasping, he wasn't in any kind of pain whatsoever...it was as if while I was holding him, God wrapped his arms around both of us and just transferred Brendon from my arms into his. His heart just stopped beating silently. He looked as though he had a smile on his face, that cute innocent Brendon grin he so many times had even when times were rough. It was his way of saying, ‘it will be okay Mom, you're gonna be okay’. I could almost hear his sweet little voice saying that to me as he left.” Then she recalled his birth as she wrote “I was reminded this morning as Brendon passed away, of when he was born. He was due on Thanksgiving of 2002 but he was nowhere near ready to come. I went to Temple, TX to King's Daughter Hospital, not once, not twice, but three times to be induced...Brendon finally came on the third time on December 10th 2002. And as quietly as he left me this morning, he was just as quiet coming into this world...I asked the nurses ‘what's wrong why isn't he crying?’, after about a minute he did cry and it was music to my heart. I didn't even know the complications I was having at the time and didn't understand why all the doctors and nurses came rushing to me, all I could feel was love, the greatest love and happiness in this world!”
Brendon’s story is one of great courage, strength and certainly of tragedy. As I, Aunt Erin write “Brendon’s Story” my heart is breaking while I recall all the events of the past 3 years. I remember hearing those words “Brendon has a brain tumor” and knowing that my world would never again look or feel the same. There are so many details of Brendon’s struggle that are not published here on this page and it does not seem fair to sum up what he went through in a few thousand words. And even more than that, it seems a travesty that his life is now being documented, because it doesn’t seem as if the story should have ended for such a precious little boy. But in some way, it is our hope with The Brendon Scott Coates Foundation, to continue his story. To help other children put on that new backpack and walk into their first day of kindergarten. To bring a smile to the heart of a child who is suffering, by sending them on a dream trip to see Mickey Mouse. If Brendon’s story can continue to touch lives, then his story has not ended, we can continue to write it for years to come. Please continue to help us tell Brendon’s Story so that we may help those kids who are fighting for another day. Please continue to tell Brendon’s Story so that some day we can tell all kids they are “cancer free” and give them all a chance to live long, healthy lives. Please continue to share Brendon’s Story because he deserves to be remembered for the brave, bright and beautiful child that he was.
We love you Brendon. We hope we make you proud.
