Most parents who have children with cancer have certain check points that tell them if they are ok, or not. Normally it is weekly and through blood tests. You get to understand the numbers and if they are up or down and what that means. It gives you a safety net in which your world operates. You know what must be done when a particular blood count is down….or if another cell count is high. It’s what rules your life…
It’s different for a parent of a child with brain cancer that can’t be treated. There are no numbers. There are no weekly assessments of your childs wellbeing. it is a literal abyss of the unknown. We wait for mri’s from between 6 weeks to 3 months depending on how bad things are. Every 6 weeks if things look bad….every 3 months if things look good. If it is bad its is for a long stretch of 6 week periods….a lot of 6 week periods….In which, we crumble into our our shells and try to be human. without the weirdness of, my kid might be dying moments.
And in the end that three-month comfortable stretch can end in disaster, like it did this last three-month stretch for us. The cancer is infiltrating. What the hell does that even mean???????!!!!!!!!!!
For us it means going from three months between mri’s to 6 weeks again. Were to be watching for tumors to form where the cancer has infiltrated.
we waste all our time at this point worrying about what is happening in our sons head. we don’t get the luxury of a weekly report. we go months without knowing what this cancer is doing to our child. we have no hand leading us into decisions or treatment. we are lost in an abyss of self-treatment in a cancer that no one knows anything about.
As parents there is no reassurance for us. We rely on the mri’s to tell us what our son’s cancer is doing….
It’s hard to wait. Even harder when a life is on the line….even harder when a family of hearts are on the line.