As the parent of a Child with Cancer there are nights when sleep is not an option for many reasons. She/he is sick and cant sleep or meds must be given at all hours of the night or the couch in the hospital is less then hospitable….. I feel very lucky that none of those are the reason I am awake at 1:45 in the morning. My mind is unable to slow down enough to rest.
I read many blogs and websites of children with Neuroblastoma and other cancers and I cry and pray for these families and often I find myself shocked at the strange little things they do to get through life that I thought only I did……. While reading Angel Christi’s blog her Mom mentioned that she found herself at a loss for a wish on her Birthday this year because for 4 years all of her wishes had been the same and that is when I realized that for the last 2+ years I haven’t blown out a candle or thrown a penny in a fountain or looked at the first star of the night without wishing for a cure for Eden.. It’s just automatic. I haven’t said a prayer in the last 2+ years that didn’t involve me begging for more time with her. I haven’t sat and listened to a friend complain about something going on in their life without thinking how much I miss worrying about other things. Not to say I think that each persons problems are less important then mine by any means. But some days it’s hard to remember what life was like when I wasn’t consumed with saving Eden’s life. We will be back in Philly in less then two weeks for scans and its time for that little pang of panic to set into the pit of my stomach that gets worse with each passing day as Scans get closer and by the day of, its all but impossible to keep from jumping right out of my skin. We will continue to move forward and be thankful for every day that we have with her!
She is still not feeling great but she does seem to be eating some now and drinking lots of water. It is my hope she will feel back to her old self tomorrow. As Rourke said the belly pain and nausea are all side effects of the ABT-751 but as long as the side effects are tolerable we will stay with it! She has been on many many drugs with much worse side effects and it is our job to choose the less of those evils. She is not completely down and out with the problems she is having.. She is still up and playing and being as rotten as ever but she is a little more grumpy than usual and maybe a little more tired.
Thank you for keeping her in your thoughts and prayers!