Pray for Piet

Please pray for Piet and his mommy and daddy, Jen and Peter.  Life is fragile.

It has been a rough day.  Pieter had a CT scan last night.  It revealed that the neuroblastoma has grown since his scans on 8/28.  Diseased lymph nodes are blocking the blood circulation and nerve delivery to his gut...that is why it has shut down.

Lots of other mumbo jumbo going on...he is working hard to breathe, his heart is beating so fast to try and deliver oxygen throughout.  Fluids have leaked out of his blood vessels and are trapped in his soft tissue...his circulatory system is dry while the rest of his body is flooded.  The doctor keeps saying, "I am very worried about your boy."

We had used morphine over the last  several days, but today it was switched to continuous with the ability to add boost as often as every 10 minutes.  They are still working on finding the right level to manage his pain.

Tonight will be very telling what direction he is going...if he continues to worsen, we will be faced with making the decision of how much intervention to do to help him breathe.  A nasal cannula, chest tube, or incubate. 

At this rate we do not have enough time to wait for the research study recommendations.  We are going to assess in the morning if he can tolerate chemo. 

The hospice/palliative team is in place...we may be heading home tomorrow with their clinical support to make Pieter more comfortable.  I shared with a friend that we were asked if he needed a hospital bed at home...we should be choosing between a bunk bed or a trundle for future sleepovers with Pieter's friends.