Lucas Chronicles: Consolidation and beyond

Hello Readers,

I apologize for  the delay in updating all of you.  I know some of you follow on Facebook, but I know some of you don't.  Last week we went in for the second phase of Consolidation (high dose methotrexate, cytarabine, leucovorin, decadron eye drops, etc)  We expected the worst because our friends have told us alot about MTX.  He handled most it very well but of course the worst was yet to come.  We also installed the port finally with the assumption that his PICC would be immediately removed.  WRONG!!!!  The medical communication lacks greatly sometimes.  One department doesn't know what the other is doing.  We also received some misleading information from our primary medical staff that again added another nail in the coffin of trust.

This was from Foto Friday at Lurie's

By the end of the week, 

• our oncologist changed our APN. 
• Lucas had the PICC removed, 
• they accessed the port early because they worried about infection, 
• Lucas was photographed for the Lurie Facebook page, 
• he got to wear his doctor costume, 
• He was walking and riding a little bike
• got another blood transfusion
• and other stuff I can't remember right now

This is the Port Incision

HE finally cleared his MTX levels on Saturday afternoon and we were discharged.  We never packed so fast!!  On the way home, his heart rate hit 155 and he was shaking and looked like he was going to throw up.  We finally made it home and the vomiting began.  3 times Saturday night and 7 times Sunday along with diarrhea all day.  Prompted an ER visit Sunday night for fluids and blood work.  Monday less vomit but still not eating or drinking very much.  OUr new APN called and Monday afternoon and said we needed to bring him in if he couldn't keep fluids in him between 4 and 8.  Well I guess the power of suggestion is great because Lucas managed to keep it down overnight and threw up this morning.  WE got Franco off to school and Rina took Lucas to the hospital just a little while ago.  I have to stay home and try to work so we can keep the house, but my mind is not on work, obviously.

Rina is at the hospital and since we don't have an official appointment they won't let her into the clinic. DAMN IT!!!!!!   I called our APN and asked that she clear this up.  35 minutes later, Rina and Lucas are still downstairs waiting to go upstairs where they are supposed to be.  This is where the frustration really gets to us.  You want to see us, but won't let us go.  However, I am convinced that security would never even know if she had just gone upstairs. 

That is my update for now.  I have to get a paycheck now and try not to worry about Lucas, IMPOSSIBLE.  Today SUCKS and so does CANCER.  Stay aware, love your children and hold them close.  Share this page to help build awareness as well.

Talk to you all very soon.