This is a revision of our previous page. I have new information that I’d like to update you about.
Ben is now 7.5 weeks out from radiation treatment, as of this day April 22nd. Ben had his first appointment with the Neurosurgeon since surgery in December. His MRI was on April 13th. The results show no new tumors. For now, he has swelling on his brain where the radiation treatment covered almost his whole brain. I could see the space where his tumors were on the scan and there’s a pocket of fluid. His Neurosurgeon said all of this should go away with time but, he needs to be watched closely by Oncology. At this time we don’t have an Oncologist so Stanford is looking into finding one for Ben ASAP. Precautions are: No head jerking movements that could disrupt his healing process. We still have two months of observation for adverse effects although I’ve been told by the doctor that problems can arrive years after. It’s always a wait and watch. So far, he’s had headaches, weakness of his right gross and fine motor skills. Pain in his joints, when he’s active, such as running, jumping, and numbness in his left side and face. I thought of getting him a wagon but, because he needs light exercise to gain strength, he may become too inactive if I’m pulling him around in a wagon. We have an appointment for a physical therapy assessment next week. Since my daughter will be going to college in Michigan this fall, I’ve researched U of M hospital and discovered that everything I was told by Stanford’s Oncology to discourage seeking a second opinion was false. U of M does have a tumor board and they also have a very extensive research lab that focuses on hard to cure and recurrent pediatric brain tumors. Ben’s Neurosurgeon said he will call their Oncology department to get us started. Yeah!! They are also one of the 25 facilities in the United States that offer Proton beam therapy which is the typical protocol for pediatric brain tumors. Ben had 33 rounds of GAMMA knife radiation to more than half his brain. Gamma is typically 1 to 5 rounds according to my research. April 7th, I had a telephone consultation with the founding doctor of the research lab at U of M, this was the first 2nd opinion I’ve received in the 7 years we’ve been on this cancer roller coaster. Unfortunately, the news was not what I had hoped for. Ben’s diagnosis of RELA Fusion Positive Ependymoma Grade III (High-grade Glioma), is incurable which means there’s nothing that their lab can do for him. Doctor Koschmann said, “If it’s come back as many times as it has, it’s going to return.” He told me to call two other facilities that have trials that Ben is eligible for. The first one ended in February 2020 and the other I’m currently corresponding with. So far I’ve sent our medical records and plan to send Ben’s MRI scans as soon as I get them. This trial is in Washington D.C. Dr. Whang and the other one I was referred to by a researcher in Oregon with Dr. Ching Lau in Connecticut.
It’s very disheartening to email and talk with specialists in the Neuro-Oncology field that seem to have no hope, as they tell me, “I’m very sorry I have to go through this.”
At this point in our journey, my goal is to find a trial that may save him from recurrence and/or give him the most amazing over-the-top adventures life any boy would want until the next tumor arrives and just deal with it then. I’m at a crossroads, and I’m exhausted from the countless hours of researching, emailing, and phone consults. Although it is a labor of love. My full-time job to say the least.
Most of all I want to see Ben happy, I love his smile, I miss seeing it every day but when I do, it makes everything worth it.
Thank you for your prayers, positive vibes, and for giving me your ear/eyes.
❤ Vicky - Ben’s Momma.
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