So...What's up?

So I was going through my computer and cleaning some things up.  Realized that really did not wrap things up for those that were following Amanda's story.  Thought I might tie up some loose ends!

First, I am sorry that the posts kind of stopped suddenly.  Let's just say that things were tough in our household for quite some time.  With each treatment, Amanda struggled more and more...we were literally going from day-to-day.

Now the important stuff...

Amanda is doing quite well now.  She was given the cancer free diagnosis in November 2014 (yay!).  She still struggles with some medical challenges as a result of the damage done by the Chemotherapy, but overall she is doing well.  Mom and dad still get jumpy with each illness (especially if a lymph node goes a bit wild and swells)...guessing that will become less of a challenge, for us - with time.  Her hair is back now, although she is a new person and has latched onto the short hairstyle look - can't say I disagree with her.  There is something amazingly "adult" about her.  She seems to have made a leap from that "know-it-all high school teen" to a young woman with wisdom beyond her years.

Biggest news is that Amanda is now officially a university student!  Currently starting her BSc degree path - still has dreams of medical school!  She is doing well, although she still struggles a bit with fatigue.  She has this insane drive that I, quite frankly, would love to be able to tap into - she got that from her mother!

Anyhow, going to keep this brief.  Overall we have to count ourselves as blessed.  2014 will forever be a blur to our family, but in the end it will help define who each of us is in our own unique ways.  I can honestly say that, by the Grace of God, we have made it through a very dark time...we are blessed!

Thank you to each person that has touched Amanda's life and helped her through her Journey.

- Chris Krysler and family

PS

I would like to say Rest in Peace to Father Catfish.  He was a Father with Edmonton Catholic School District and a source of inspiration to thousands of students in Edmonton.  I happened to post an inspirational YouTube video he produced on his channel did after he found out he had Cancer.  Unfortunately, he lost his battle with Cancer on September 24, 2014.

Round 4, Treatment 1

Well, have to say that Amanda was definitely not as nervous about going to Chemo this time around.  She is convinced that the Ativan is a wonder drug...we started her on that a couple of days before her treatment.  Amanda does have quite the cocktail of drugs she has to take now before she even gets to the Cross Cancer Institute on treatment day:

Now that is putting a happy face on a scary concoction!

The actual treatment went okay compared to last time.  Nice thing was that the nurse in charge of her care was the same one as last time and immediately put her into a private room.  Amanda was appreciative of this.  We could close the door and that helped a lot with the smell triggers she now has that definitely make her nausea worse and she can sleep off much of the time at treatment.  Afterwards, the nurse indicated that she would put on her chart that she needed a room for her future treatments.  This will  definitely help!

Post Chemo was once again no picnic.  Once again we are having to pump down a ridiculous amount of drugs down our daughter for the first 4-5 days post chemo.  That, and the fact that it is almost impossible to get her to take any fluids at all makes one wonder about the hell her kidneys and liver must be going through!  The triage nurse told us that if we were unable to get at least 6 cups of water down her in a 24 hour period, we would need to take her in to get hydrated...she barely made it the first 3 days.  We are still planning on talking to the doctor next week about keeping her for the first 24-48 hours to ensure that she is properly hydrated. 

It is actually the end of day 5 tonight and Amanda is doing better.  She is actually talking and eating!  There are a couple of troublesome things that have cropped up that we are needing to keep an eye on.  She is complaining a lot about swelling and stiffness in her neck and she is coughing quite a bit (she is scheduled for another lung function test next week).  She also has an accelerated heart rate (about 103 bpm) that could indicate a hidden infection, so we will be watching that closely.

Stay Tuned!!!

The Good...The Ok...The Ugly

Well, we finally had to opportunity to meet with Amanda's new Hematologist on Monday.  Dr. Peters seems to be a very confident lady.  More importantly, Amanda was actually animated and communicating with her during our appointment!  She is definitely on the ball and quickly answered many of our questions that we never felt were fully explained to us over the past few months.  In short, we really like this doctor...very confident and easy to talk to!  (The GOOD!)

Much of the visit was spent discussing how we were going to approach Amanda's severe reaction to the Chemo.  One of our discussion points was to consider having Amanda hospitalized for 24 hours after treatment to at least ensure that she was properly hydrated afterwards.  As it is, we are luck to get more than a cup of fluid down her in the first 24 hours and this is, quite frankly, not good.  After some discussion, Dr. Peters decided that she wanted to try to be more aggressive on the days leading up to the treatment day.  She prescribed Ativan (Lorazepam) and Zofran for 24 hours before treatment to try and treat the "anticipatory" nausea that Amanda is definitely experiencing.  She also wants to see how well the Emend controls things if Amanda is able to get the initial dose prior to treatment as designed.  In addition she prescribed a re-flux medication in hopes that this might also be to source of some of her problems.  As a "carrot", Dr. Peters is arranging to see Amanda before the next treatment (usually Amanda only sees the doctor at the first treatment of each cycle. ..the doctor's nurse sees her before the last treatment of each cycle) to see how she reacted to the treatment and to reassess; including consideration of admitting her for treatment.  (The OK!)

Turns out this doctor takes a more aggressive approach to treating Amanda's condition.  Her protocol, especially as Amanda had "B" symptoms and the high ESR (>90), is for 6 cycles of ABVD Chemo.  That means we are looking at an additional 6 treatments rather than just 2.  Although we did not get a clear sense of whether this was going to be her final approach, every indication is that this is the new plan.  Amanda was PISSSSED!  Let's just say that she would not talk to either parent on the trip home.  (The UGLY!)

In the end, we have to take the approach that her treatment is being led by the Spirit.  Too many unusual things have occurred to lead us to this doctor (I mean we had a long time Alberta Health official tell us that she NEVER had seen a doctor changed so fast in her life). God knows what is needed for her to fight this battle successfully, and if that means enduring another 2 months of treatment...so be it.  At least she will be alive.  Good news is that it looks like Amanda has come to terms with this and seems to be in good spirits...

...Chemo on Friday

Chemo Treatment...Cycle 3, treatment 2...YIKES!

Wow!  This is a rough one!  At this rate, I think everyone is dreading her next treatments...especially if they keep ramping up like the last two.

Started out with a round of Hydrocortisone to try and reduce the rash reaction she is starting to get.  Then the usual drugs...was was only about 30 minutes into the typical 4+ hour treatment and Amanda was a mess.  About the time tears starting to flow because she was feeling so ill, a very kind nurse moved her into a private treatment room.  Turns out this nurse use to work in a pediatric cancer ward in Hawaii for 10 years and had some interesting insights into Amanda's struggles with nausea.  The fact that she is a young female and had a mother that was VERY nauseated throughout her pregnancy with Amanda pretty much puts her at the highest level of risk of severe nausea during Chemo...also muttered something about Amanda would still be treated as a pediatric patient in Hawaii, but that is another story!

Anyhow, let me see if I can remember all of the anti-emetics that they pumped down her trying to control the nausea.  Ativan, Stemetil, Maxeran (we were desperate), Zophram,  Gravol, and finally they sent us home with a prescription for Emend.  Also really increased the Saline solution and slowed down the rate the drugs were being pushed. Can't say that the nausea was controlled, but she was not really aware of the fact she did not feel well - probably should have used a wheelchair to get her to the car as she was not walking to straight.  Pretty much knocked her out until this morning!

Much of the day has been trying to control how she is feeling.  We are basically pumping Dexamethasone, Zofran, Stemetil, Benadryl (yep...the rash is back!), and Gravol down her.  Not really working great and getting her to drink anything is a full-time job for two - and she really needs to drink LOTS of fluids.  Hopefully tomorrow will have her feeling a bit better...really would rather avoid an ER visit!

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??