Shortly after Ben was diagnosed with Neuroblastoma in 2004, I attended a conference in Chicago that dealt specifically with this insidious disease. It was an annual (now semi-annual) event put on by a mother who lost her son a few years prior, but was dedicated to continuing the fight for others. She collected all the experts in the NB world to come speak on the topic. Being a newly immersed mother in this NB nonsense, I felt that this conference was mandatory. I packed up my infant daughter and drove to Chicago with my friend, Patty, while Matt stayed behind with Ben, holed up in the hospital.
The conference blew my mind. So many people milling about to discuss and learn all they could about a supposedly rare cancer. I heard stuff I didn’t want to hear. I saw videos of things I didn’t want to see. I saw too many parents leaving the room when the “angel group” was called, which meant they had lost their precious child to the Beast. I was absolutely shellshocked.
During a Q & A period with one of the presenters, a veteran mother was asking some questions. I listened with one ear while I was playing with my three-month-old, begging my baby to smile at me in the midst of all this heartbreaking news being shared. The mother was asking when the next new therapy would be available since her child had been fighting for years and was nearly out of options. The doctor expressed that he didn’t know. And then she made a statement that I don’t think she meant to state out loud: “Maybe it would just be better if my son died.”
Nobody seemed to react to this statement but every cell in my body seized. Is this what we’re up against? This sense of lost hope? The dread of running out of options and horrified that nothing else is available? And why were all these people okay with what she just said? I wanted to run out of the room AND hug that poor woman all at the same time. She was exhausted. She was tired of watching her son die right before her eyes and being absolutely helpless to stop it.
Now that I am in her role – that of a veteran mother – I have to say that there have been some times where I’ve lost hope, too. When a relapse occurs. When he’s terribly sick from treatment. When he’s unable to simply be a kid. I’m guilty. I’ve thought similar thoughts. Maybe he’s getting too tired. Maybe this won’t work. Maybe.
But in a conscious effort to STFU (Google it if you don’t know what it means) I’m taking a look at all the hope that is out there. Ben just finished a high dose of radiation and had a 99% response rate! This is phenomenal! One thing is for sure, my son is a fighter. He’s battled four times and has won four times. Of course, I have to be cautiously optimistic, this is a cancer that LOVES to return and get meaner each time it comes back. But, STFU Sarah, Ben is good right now.
And right now is all any of us have. This is the truth for every single one of us.
Appreciate each and every moment. And choose hope for what lies ahead.