Update Time...Been Awhile

Sorry it has been a bit since the last update.  Been more than a little crazy around here with Amanda.  Just trying to think of where to start spinning my tale of intrigue and drama...

It all began with the weekly visit to Amanda's doctor.  Pretty standard stuff, although we did have some questions around Amanda's social/emotional health.  As I have indicated in past entries, Amanda has really struggled with the fact that there really are not any peers around that she can identify with when she is being treated.  She falls in this weird "mature minor" category - basically a minor being treated in the adult system.  We did try and make contact with services at the Cross Cancer Institute, but they would only talk with her and she was not really interested.  What we need, even at her more "mature" age, is a more proactive approach where services actually come and visit her and then she can decide if she is interested in taking advantage of them!  ANYHOW...we brought up the subject with the nurse that sees Amanda each week and she indicated that Amanda needed to request these services.  Amanda, being rather stoic personality said she was fine...that was that.  Doctor came in and Amanda was still a bit emotional from the conversation and the doctor, in a rather shocked manner said "your crying!"...and that was it.  Then, she asked us what the plan was in regards to her next PET-CT (next one 1/2 way through treatment or at the end of treatment)...one would think she would have known!  Then we decided to do a head CT due to some concerns with her vision.  Question came up as to whether they could put in the contrast through her port, and the doctor did not know...did not bother to find out either.  This was the same doctor that a nurse in the Chemo day-ward had to fight to convince her to allow a Port over a PIC line (a rather cumbersome and archaic method of delivering Chemo meds.).  Final topic of concern was a strange rash that she had on one of her arms for a few days after her last treatment - no concern by the doctor (more on this one in a minute!)

Fast forward 24 hours.  Amber has just about had it with Amanda's doctor and called Alberta Health Services to formally complain.  Less than 2 days later, much to the shock of the case-worker, we now have a new Hematologist as Amanda's lead doctor.  We see her the middle of next month.  The case-worker told Amber that she had NEVER seen a doctor change so fast in all of the cases that she has had.  Once again, we have to think that someone is looking out for our girl.

Good news over...now the crap news.  Remember that little concern we had with the arm rash.  Well, I'm writing this blog in the hospital ER on a Sunday night at about 11pm.  Let's just say it was a lot worse this time.  Amanda is also really struggling with nausea.  The rash is on both arms, face and chest and is REALLY hot to touch, although she has no itchiness or pain.  Hoping it is just a reaction to one of the chemo drugs, but who knows...