There is a question deep in the back of my mind that occasionally comes up, Did I fail? Did I learn all I could about my sons cancer, did I go to the right people, did I go to enough people, should I have chosen a different doctor, should we have gone to St Judes?
I tend to beat myself up about this. After Julian relapsed I began researching again like a manic, I had researched all along, but this was a crazy level of research.
I discovered some articles and reports I had somehow missed when Julian was diagnosed, from a doc at St Judes. After reading them I was sick, testing medulloblastoma at dx for intenisty potential, severe cases go directly to stem cell replacement treatment.
Don’t know how I missed that, its huge. Might have changed our entire plan…
I have been told many times, you are an awesome dad, You did the best you could, It wouldn’t have made a difference, etc
But i have never felt that way. I will always wonder why I didn’t know about that article, why the docs didn’t tell me, and if it would have made a difference
We chose not to go to St Judes in a moment of blind wisdom. We were afraid that if we went the family would have been split for too long, and if Julian didn’t “make it” it would be even tougher split apart. Being all together through it was a blessing. So maybe regardless it was the right decision.
But I never asked God for guidance on this, just to make him well.
So did I fail? Some day the answer will be revealed to me, Until then I do live with deep regret.
i swear i am not stalking you:) the details are differnt but the story line is the same. I could have said the same things….i have deep regrets in this department. we talked of going to st judes too…..henry’s leuemia required 4 years of treatment and mike’s boss was willing to transfer him to peoria…..but we didn’t….we drove to Riley to be closer to family……when henry relapsed it made no sense to me. for three months he had blood tests….and the “croup”,,,how did they miss that? what henry had was a monster cancer that came back blazing, guns firing…..why no chest x-ray when all relapses typically appear in the chest cavity? why didn’t i “feel” the cancer vibe? Was I not tuned in enought to my son and his situation. I have deep regret and blame myself alot for his death. in my head only and to you for the first time.
***20 minutes have gone by…..writing that down gave me a mini-panic attack….you never know when the tears will come…it’s like a monster who appears out of the sky……..but i feel soooooooo much better. When you address the monster, it loses its power and hold……you’ve given me new inpsiration and perspective…..why do we feel like we need to blame ourselves?? I know i did the best i could — but it wasn’t good enough. am i not good enough? Will that feeling i had as a child always follow me to every corner of my life? even when cancer enters the ring…….why was my denial so deep? I NEVER IMAGINED OR THOUGHT HENRY WOULD EVER DIE. I thought that was negative to consider and i always saw him as a survivor….a winner who would conquer the beast. Did my denial kill my child?
all rhetorical.