Yeah, so I’m not so great at this blogging thing. Turns out I am really bad at the online college stuff, so I’ve pretty much back-burnered this blog and the CaringBridge, and I’m sorry. But even if I’m not writing about cancer, I’m thinking about it, researching it, corresponding with practioners and other patients/caregivers, and participating in social media groups.
I commented on a post on the DSRCT Facebook Page I am a part of and thought I’d share it here because it took some effort to sum up what is a very important and personal issue for me. And I think will help anyone who might read this to understand just how I feel about my son’s cancer.
I understand how you are feeling. I have long said that more patients die from the effects of treatment than from cancer itself. But it’s a catch-22, the only treatments that have had any significant effect on the cancer are the most damaging to body. Without aggressive treatment, surviving DSRCT is impossible. But surviving the aggressive treatments is also nearly impossible.
After my son’s cancer recurred after more than three years of NED (in 2010), I knew that a “cure” was unlikely. His inoperable liver tumor makes the chance of him ever being NED again unlikely. So we have tried, somewhat successfully, to treat the disease while maintaining his quality of life. Almost like a diabetic or other chronic illness we know as long as he lives he will have to be fighting this. But we just pray for a long long fight. And we are trying to do that by limiting the amount of toxic treatment and keeping him healthy and active. HOWEVER PLEASE KEEP IN MIND MY SON ALREADY RECEIVED ALL THE STANDARD FRONT LINE THERAPIES IN HIS ORIGINAL TREATMENT REGIMEN (P6 chemo, complete resection by LaQuaglia, temodar/irinotecan, and full abdominal radiation), AND REACHED THIS POINT CURRENTLY AFTER AGGRESSIVELY ATTACKING THE RELAPSE WITH SURGERY AT MDA WITH HEATED CHEMO AND TARGETED RADIATION.
Today, there is much promise in the immunotherapies and targeted gene therapies that harness the body’s own immune system rather than destroying it while trying to treat the cancer. We participated in such a trial successfully and these trials and research will eventually lead to using poison to treat cancer being a thing of the past. I believe that, and I am hopeful always that my son will remain a long term survivor of DSRCT. We take each day and each scan at a time, and we’ve been truly lucky that we are 2.5 years since his recurrence. He’s a healthy kid living fully despite his disease, playing sports, going to school, even hitting puberty (which is crazy since I was told he’d die at age 6)! That’s the best I can hope for, and I feel so lucky. My heart breaks for the many families that don’t have our experience, and sadly many do not. Every experience is different. But even Brian’s son Marc, who has endured many complications of treatment and persistent progression, along with traveling from Ireland to MDA, has been able to finish high school and keep a social life with his schoolmates. Kate G is another example. There’s so many people who LIVE with this disease. Maybe not for as long as they should be able to, maybe having to fight to be able to, but they live.
The promise of tomorrow is an illusion I lost 10/31/2006. But for everyone really, it’s only an illusion.
Please, stay strong. Keep fighting, questioning, looking for new hope wherever it can be found. Help your son remain positive and be a boy and never forget what he’s fighting for. Prayers, positive energy, and HOPE ALWAYS.
A final thought.
RESEARCH $ = INCREASED SURVIVAL