Monday, October 28, 2013

Real Life Heroes

Our 4-year-old son has cancer.  Yesterday morning our refrigerator went out.  We got to Lowe's the moment they opened and purchased a new one, but they could not deliver until Monday afternoon.

Since he is undergoing chemotherepy, food safety is a priority.  His body does not have the immune system to fight off even the weakest bacteria.  We also have several hundred dollars worth of medications that must be kept refrigerated.

We told Lowe's we would pick up the refrigerator since they could load it.  But once we got home, how would we get it out of the truck?!  We were panicked at the thought of losing meds (on a Sunday when Medical Park Pharmacy is closed, no less).  We sent out a facebook SOS.

Here's what happened:

Thursday, October 24, 2013

Just Breathe

Whelp, started the day with a nightmare of Ben's funeral (for some reason we were being forced to have a rehearsal dinner like at a wedding and I was trying to convince them not to leave Ben's coffin all alone at the church overnight). So fucked up.

 Went to the oncologist planning to be admitted, but failed counts (that always freaks me out because he is "off treatment" and that makes me feel like we're not DOING anything and the cancer cells have time to grow and replicate and it will get stronger). Not inaccurate, but not completely rational either.

 Came home and was excited to read the new MRD study from a global forum that the FDA held at the end of May. Regret what I learned. Ben's MRD level has a ~40% survival rate-even lower than we thought. 

Sitting here reflecting on this hellacious day when we remembered that Ethan's Parent-Teacher conference was at 4:30 today. We just completely forgot. Feeling like we are failing both of our children.

This is so freaking hard. Sometimes I think "yeah, we're going to make it. We're going to be stronger for it." And then I get a sucker punch like today and I wonder how we will make it through the next day, hours, minutes. How have we not just exploded with grief? Literally, physically exploded? What is keeping the sinew and flesh of my body from ripping apart from the force of my heart breaking.

 My soul hurts. It's a physical pain, that measures nothing compared to the pain cancer has inflicted on the tiny 36-pound body of my baby boy. Nothing to the pain Ethan feels in those moments he thinks I don't care about him or have time for him (I know he thinks that sometimes, because I thought it at his age when my little brother was dangerously ill).

Most days, with support, prayers, and a good sense of humor on my side, I feel mighty. Today is not one of them.

Today... I'm just trying to breathe.