Hospital Outcome Update

Well, interesting visit to the hospital.  Once again got to experience the best and worse of medicine, but we are getting use to that!

When we got to the ER they were rather busy, so Amanda did need to wait (briefly) in the waiting room.  Nurse came out and called her and then promptly refused to allow Amber in with her.  Amber explained that she was a minor, but he was not interested and said something about there being no room in his area (seemed a bit grumpy if you ask me!).  Amber comes storming over to the security desk were I was getting a visitors pass REALLLY pissed off.  The security officer was kinda funny, because one look at her and he told her that "all he knew was patients were allowed 2 visitors - feel free to go back" and gave her a pass.  I escorted her back to Amanda and left them there - nurse was not happy to see her.  For the next hour or so, completely gave them the cold shoulder...saw patients that came in later, did not talk (or even do vitals), nothing.  Actually ran a wheelchair into the ankle of Amber positioning it to do a patient transfer from a bed next to Amanda - just to make a point (there was no patient in the bed on the other side of this patient's bed). Meanwhile, Amanda was NOT feeling well (had chemo two days before) started to feel like she was really going to get sick.  About this time, the nurse finally came and talked with her and I think rapidly gained a new appreciation for the predicament she was in.  Shortly there after, Amanda was in a private room in another section of the ER on an IV with a lot of discussion as to what the heck was going on.  

The first thing they did was re-hydrate her and then get her some IV Benadryl.  They did not have any IV Stemetil (something about a global shortage) and Amanda does not tolerate Maxeran, so they had her take her pill form of Stemetil that she had on her...which she promptly threw-up.  Next thing on board was IV Gravol while they tried to figure out the rash. 

Long night short...they "think" that she is having a rare allergic reaction to the Bleomycin (the "B" in her ABVD chemo regiment).  With the IV Benadryl and the re-hydration she was looking much better so we were sent home...

...still having to give her daily Benadryl, but the nausea is under control now.  Her grand-parents are getting into town tomorrow from Oklahoma City and her Uncle is getting married on Saturday (she is a bridesmaid).  Looking like she made it through this round, so should be good for the next week or so!

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...

Halfway Point...Yay!

Well, treatment number four was done last Thursday.  Amanda actually has handled this last treatment really well...except that she thought that she was on treatment number five...REALLY pissed off when she realized her mistake!  

This last one was the first one that you could really see the dread of going to treatment on Amanda's face.  Was not a happy camper that morning.  Guessing we are going to have to expect that from this point forward.  She actually came through this treatment pretty well.  Was able to help with some redecorating of her room this past weekend!

Anyone see the cat??

Back from Camping!

Well, Amanda has been doing much better once again now that the last treatment was about a week and a half ago.  Actually managed to get the family to the mountains for a short 3 day/2 night camping trip to Jasper National Park.  Just got back from their this evening.  

When our family camps, we pretty much rough it...tents, sleeping bags, cooking food over an open fire (man we had be BEST steak the first night!).  Our only real acknowledgement to modern living is we do have some nice air-mattresses to sleep on!  Our first day we pretty much relaxed and did some walking with our two dogs around the campgrounds.  Actually one of our favorite camping grounds located a bit further from Jasper, so you really do not feel like there are many people around.  Also located right next to a beautiful river, so the ambiance is pretty special.  

Monday we got in an awesome hike about an hour south of Jasper.  Basically spend about 4 hours hiking along a creek that featured something like 19 different waterfalls.  Once I locate my memory-card reader, I will post some pictures on my Facebook page.  The next day we visited Mt.Edith Cavell and its famous glacier.  I think the last time we were here, Amanda was only about 3 years old...man has that glacier changed!  Even much of the lower trail no longer exists as a result of flash-floods caused when huge chunks of glacier fall off and land in the pool below.  We spend another 3 hours or so there carving our own trail over the rocks until we needed to head home - but not before a stop at Jasper's famous fudge factory for some chocolate delights! (one of our best family traditions)

Probably was one of our shortest camping trips ever.  We had to time it at the end of her Chemo cycle to ensure she felt her best, and Amanda has her appointment with the Oncologist tomorrow and Chemo scheduled for Thursday morning.  Pretty sure we wore out Amanda, but she had a lot of fun.  Was nice getting out of the house and just being a family again for a couple of days.  Lots of joking around and laughter...good memories.

Update time!

Well, been a bit since the last report.  Between end of school activities, Amanda's graduation ceremonies and her latest chemo, just now able to come up for air!

As reported last time, graduation commencement was very memorable,  but not nearly on the level that the banquet the next day was.  The night before, Amanda reminded us that she needed to be ready for the limousine by 2:00, so the parent's minds immediately went into high speed as to how to organize everything.  First up, Amanda and I drop mom off for her last day of work before the summer break and then make a quick run to the store for some new makeup and stuff to "up-do" her wig.  Next, was a stop at a clients house before the wig shop opened.  Fortunately that went well, so got her there by 10:30.  An hour with the consultant at the wig shop (unbelievable the time and attention to detail they put in...right down to simulating broken strands of hair that always falls down!), and she is already looking stunning.  Quick stop at the flower shop to pick up her corsage, and then to her friends house for makeup. 

Time to breathe...finally!  Amanda and her party of friends spent the next 4 hours touring the city and taking pictures.  Think it was one of the best times she has had in some time.  When Amber and I got to the banquet and saw our daughter for the first time, it was a feeling I really am not sure how to describe, so I won't.  We have a few Picts on my Facebook page if you want to see what I mean!  All I can say, is we don't have a little girl any more - she is very much a special young woman in our lives!  

The banquet was very nice.  Turns out it was buffet style, so the chef graciously made up a special plate for Amanda, as she is not permitted to eat food served in that fashion due to concerns the viruses with her weakened immune system.  Got to have a dance with Amanda in the parent-grad dance, so I would say the evening was quite memorable.  Funny thing was that a bunch of her friends from elementary and Jr. High that she still plays soccer with were at their High School banquet as well in the same convention centre.  Needless to say, we crashed their party and got a bunch of photos with them as well...kinda cool!

...next morning (Friday)...Chemo treatment...bleah!

Treatment went well, but the post nausea really hit her hard this time.  She has been quite sick and has been needing to take Stimetel (prochlorperazine) to keep from getting sick.  Good new is that she is starting to eat now and is moving around again so it looks like she is now through the worse of it.  Overall we can't complain - it has been a good week in a "big picture" point of view.