The life of the Tedesco family is typical of most Northern Californian’s. They enjoy the outdoors. They eat organic, healthy food, and have a centered, spiritual approach to life. They also have a child with cancer. Ash and Mike are the proud parents of two perfect children. Silas who has cancer, and Gia who does not. A beautiful and empathic girl, Gia intuitively tends to her brothers needs with maturity well beyond her years. Her baby brother has Acute Lymphoblastic Leukemia. His name is Silas, and he loves cars. Toy cars, real cars and especially the Cars movie. He recently, along with his family, enjoyed an experience of a lifetime at Disneyland, being treated like royalty by the cast and characters of the Cars series. This well deserved experience was provided by the Make-A-Wish Foundation.
CULTURE recently chatted with Silas’ mother, Ash. The exhaustion was evident in her strong voice, as was the hope. Ash Tedesco is a woman on a mission, not only to heal her own child, but also to aid families affected by this devastating, yet treatable, disease.
Tell us a little bit about Silas. What are his favorite things?
His favorite is the Cars movie. Mater is his favorite. He’s really into Jack Skellington, that’s his second favorite. He knows all the songs from The Nightmare Before Christmas. He loves all the boy toys—cars, planes, trains and trucks. He’s rough-and-tumble, but he’s a big lover too. He loves hugs and kisses.
What is Silas’ diagnosis? When did you receive the news?
May 2013. On Sunday morning, Mother’s Day, we took him to the ER for the second time, and they did blood work. His white blood cell count was through the roof and his hemoglobin was super low, so much that he needed a transfusion right that moment. They put us on a Flight for Life from Eureka to San Francisco. They found he had Acute Lymphoblastic Leukemia, which is cancer of the blood. Over the course of his treatment, he developed epilepsy from the chemotherapy.
The epilepsy is a direct result of the chemotherapy?
Right. He has more seizures around his chemo days. Chemotherapy for leukemia is about two and a half years, but for boys, it’s six months to a year longer, because leukemia cells hide in the testicles. We’re looking at about three-and-a-half years of chemo, because his leukemia is so aggressive that if they don’t this length of chemotherapy, it’s highly likely to come back, and if it does, it will be much more aggressive. We’re trying to avoid that at all costs. It’s looking like September 2016 will be the end of treatment, and that’s when he’s scheduled to start kindergarten. Hopefully he’ll be clear and able to start being a normal kid.
How does cannabis help Silas?
Cannabis helps him eat, and stay active. Different strains help him sleep. We’ve done a lot of research, and believe that cannabis kills cancer cells. Combining chemotherapy with cannabis treatment, I feel will give him the best possible outcome.
“We’re basically doing our own clinical trials. If it weren’t for social media, we wouldn’t be able to do that. I don’t care about the negativity that comes to me; it’s all about Silas and doing what’s best for him.”
How does Silas medicate?
We use full extract cannabis oil. We don’t use the RSO method because we don’t use isopropyl alcohol we only use organic, food grade alcohol for Silas’ medicine. He can have an edible, but we try to limit his sugar as much as possible. We feed him the best possible diet we can.
What other medications does he take?
It’s about three pages long. He takes an oral chemotherapy every day and a more aggressive chemotherapy every Tuesday. He gets chemo through his port once a month. He has a lumbar puncture with intrathecal chemo every three months. He takes a steroid pulse, twice a day, every day for five days, every month. He also has other daily medications and rescue meds we give him when he has a seizure. His medication profile is very extensive.
What do you want people to know about being a CannaMom?
People think that we just sit around on Facebook, but the reality is you’re making connections and doing research for your child. We’re basically doing our own clinical trials. If it weren’t for social media, we wouldn’t be able to do that. I don’t care about the negativity that comes to me; it’s all about Silas and doing what’s best for him.
How is Silas feeling today?
He’s having a rough day, he had chemo through his port this afternoon, and that’s aggressive. He had two smaller seizures this morning so I’ve been on high alert with that. Every day is different. We try to track it and find the patterns, but you’re always on your toes.