It’s been a while since I’ve done an update on Ben’s progress and I’ve been getting swamped with questions about Ben’s type of cancer, the treatments that we’ve done and what comes next.
Ben has been diagnosed with diffuse pontine glioma - a cancerous tumor in his brainstem. Click here for an understandable explanation and an image of this type of cancer. His initial symptoms were loss of balance and coordination while walking and performing fine motor skills. He started drooling and experiencing facial palsy a day before he was admitted to The Children’s Hospital of Denver.
Ben starting taking the decadron steroid while admitted at the hospital to relieve the swelling of his tumor. The steroid had a wonderful affect on his initial symptoms, but came with the standard side affects of a chubby face, a lack of energy and an overall crabby mood. He’s been off of the steroids for over a week and is starting to feel and act like a normal kid again.
Ben underwent an exhausting six week radiation treatment program at the University of Colorado Hospital at Fitzsimmons. He spent most of the six weeks in the car or sleeping on the couch. We’re getting cautiously excited about the results of the treatment now that Ben has regained some of his strength.
We’ve consulted with a naturopathic doctor here in Denver to start Ben on a regiment of vitamins and herbs to increase the effectiveness of the radiation treatment and decrease the tumors ability to grow.
We’ve also meet with Dr. Prasanta Banerji, a homeopathic doctor from India. He has recommended a homeopathic remedy for this type of brain cancer and is confident with the results he’s seeing in India. There has been a limited amount of testing on this remedy in the US, but we’re hopeful that it assists Ben’s immune system in its fight against cancer.
So, where are we now?
Ben is doing quite well. He can walk up stairs without assistance, run for short bursts, ride a scooter, draw and write without his hands shaking and shows little sign of facial palsy. He’s starting to go back to school on a limited basis (mainly to accommodate our schedule of doctors appointments) and is looking forward to his Make-A-Wish trip to The Wild Animal Park in San Diego in January.
Ben has his next MRI the week of Nov. 28th to get an ideal of how affective the radiation treatment has been in reducing the size of his tumor and the amount of cellular necrosis that has occurred.
Dr. Foreman, Ben’s oncologist, has told us that there are several experimental treatments being conducted at this time and we’re starting to review them. I can’t say that we’re too excited as none of the treatments are curative and most of them include a fairly strenuous regiment of chemotherapy. We are keeping an open mind and will review all of the choices as we learn more about each treatment.
Watching Ben get sick and accompanying him to his treatments has not been easy on Madie. We can only imagine how these experiences will shape her life and hope that this inspires her to great things. Her three wishes were fulfilled as we planted a garden out front, got her two disco balls and (thanks to the Sanchez family) rode a horse. It’s been wonderful watching her and Ben regain their childhood together as he’s improved.
Melinda has enjoyed having the kids at home again and is getting back into her crafty holiday projects. She threw a great Halloween shindig for the kids that filled the house with laughter, costumes and games. I’m not exactly sure what she has up her sleeve for Thanksgiving and Christmas, but I predict that it will blow last year away.
My employer has been more than generous in granting me leave and I’ve started working part-time again. Going back to work is being a bit more difficult of a transition than I imagined. The people I work with incredibly supportive and are helping me get back into the groove.
Thank you to everyone that supports us. We wish you all the peace and love that you have shown us.
