Amanda's Theme Song

This is a special song to our family right now
Amber calls this "Amanda's Theme Song"

Tuesday, August 27, 2013

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!!!

Tuesday, August 20, 2013

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

Saturday, August 10, 2013

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!