If you’ve been following Robbie Butler and his fight against cancer, you probably already know how brave and special this 4 year old boy is. In April of 2014, Robbie was diagnosed with a rare brain tumor called AT/RT (Atypical Teratoid/Rhabdoid Tumor). AT/RT is extremely rare and aggressive form of cancer. Robbie has heroically endured several rounds of chemotherapy and radiation. Now two years later on April 14th, 2016, doctors discovered the cancer had metastasized to several tumors along his spine. Rob and Ashley’s choices were limited. There were only two trial options and they were not guaranteed to be available. They had the option to use radiation on the top part of his spine where the tumors posed the most threat to his health and would still qualify for the trial chemo. Using radiation on the whole spine and treating everything sounded ideal, knowing that would disqualify them from any study as there wouldn’t be any untreated disease left for them to watch for a response from the chemo. Robbie’s parents opted for radiation which meant they had to relocate their family to Denver. As a result, Rob and Ashley were then forced to close their restaurant in Granby, Colorado which was their only source of income.
Currently, Ashley and Robbie reside at the Ronald McDonald House in Denver. Robbie recently completed his third round of radiation. Today Robbie goes in for scans to see if the last tumor along his spine has dissipated and how to move forward from here. He continues with physical and occupational therapy three times a week and is stronger than ever. Robbie has come far, physical therapy is a challenge, but this boy has more heart than most adults I know. Physical Therapy with Robbie.
The reality is many days are good and some days are not so good. Ashley does the best she can, but how do you tell your 4 year son that he can’t have Goldfish because he is only allowed breakfast two days a week. Robbie is unable to drink anything either, but he simply doesn’t understand why. Ashley says days like this aren’t easy. “Why can’t he have one Goldfish? Why can’t he have just one tiny sip of water?” “Mama please?!?!” Ashley says,” Robbie will say that over and over again and no matter my reply, his tones will vary from frustration to almost desperation to heart broken. It doesn’t matter how polite he asks. I can’t. He can’t. And, it breaks my heart every day.”
On his first day of school, Robbie was unable to attend. Instead he started an infusion of Avastin to help prevent damage from the radiation. What should have been his first month of school this past August was radiation appointments, Monday through Friday and clinic once a week. Ashley has to tell Robbie that school is closed today and when he asks the next day why he can’t go to school her response is similar, “we can’t go to school today because you have radiation.” Ashley and Rob do all that they can to stay positive and continue to help Robbie thrive.
Robbie spends time with his family and doing things he loves, like painting. Yes, this boy can paint. He chooses all of his own tape lines, and will rarely paint without tape. He tells his mom “Mama, you ask Robbie where Robbie tape?” Ashley replies “Where do you want your tape buddy?” Then he shows his mom with his hands the direction it goes in. Whether that is all the way across or stops where there is already a tape line. Robbie knows what he wants and communicates with his mom to make his paintings happen. When they first began painting he would ask his mom what to paint and she would tell him where to paint. Well, now it’s part of their routine for painting
Recently, I had the pleasure of spending the afternoon at Denver Zoo with Ashley, Robbie and some friends. The weather was beautiful, the animals were alert and out and Robbie was all smiles. Robbie asked me about my animals and he told me about his sweet dog “Daisy.” Robbie loves to be around people and talk with you. He has so much love and wisdom for only being 4 years old. Thank you Ashley and Robbie for a wonderful day.
Robbie and his mother Ashley will be making the trip up the mountain from Denver tomorrow to attend Granby, Colorado’s Trick or Treating event October 28th, 2016 4PM-6PM. Last Halloween Robbie passed out candy as “Santa Claus” from their restaurant. This year Robbie will be at Ala Mode Salon, 383 E Agate, Granby, CO from 4PM-4:45PM passing out candy. Robbie would love to see you, so stop by, say “Hi,” get some candy and just let this beautiful boy know you care. Ala Mode Salon owner Melissa Rowold and Rusty Boots Entertainment Owner Andrea Fawkes of Granby, Colorado would appreciate your company. Sharing and prayers would be helpful along with donations to support Robbie’s long journey, donations can be made at: Fighting For Robbie. You can always find updates about Robbie on Facebook at: Fighting For Robbie: Robbie Butler’s Prayer Page Thank you!
Writing this article was probably one of the hardest things I’ve had to do lately. Robbie you are a true gem. My heart goes out to Robbie and his family.