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??

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.

Graduation Day!!

Well, in the middle of all of this "crap" our family was blessed with the opportunity to experience a moment that every parent dreams of when they first look down on the face of their child for the first time...Graduation day.

Wig and all, she is quite a stunning young lady if you ask me.  Gotta say there are a couple of VERY proud parents tonight.  That she was able to persevere and actually make it to graduation today only makes this moment only more special!

Video of Amanda receiving her diploma...sorry for the blurry moments!

 The happy Grad!

Side Bar...Parent Boasting Time!

Many of our "extended" family are not aware that Amanda actually had the opportunity to work last year as a student researcher at the University of Alberta through a program called WISEST.  Was doing a little internet trolling and came across this:

Female song in black-capped chickadees (Poecile atricapillus): Acoustic song features that contain individual identity information and sex differences

• Allison H. Hahn^a, 
• Amanda Krysler^a, 
• Christopher B. Sturdy^a, b, , 

• ^a Department of Psychology, University of Alberta, P217 Biological Sciences Building, Edmonton, AB T6G 2E9, Canada
• ^b Centre for Neuroscience, University of Alberta, 513 Heritage Medical Research Centre, Edmonton, AB T6G 2S2, Canada

• http://dx.doi.org/10.1016/j.beproc.2013.05.006, How to Cite or Link Using DOI

• Permissions & Reprints

Looks like our girl already has her first published research paper!

Update from the Oncologist - Grad Tomorrow!

Well, started out today with a trip to the Cross Cancer Institute for blood work and a review with Dr. Taparia.  Beginning of cycle 2 is on for Friday.  Looks like the Neupogen is doing its job as her WBC counts are now at around 5 (normal 4.5+) and her Neutrophil Granulocytes are at 3.0 (normal 1.8+).  Amanda was funny doing her first self-injection on Sunday.  Let's just say it took awhile for her to work up the nerve to do it!  The side effects seem to not be hitting her that hard, which is a blessing.  Only complaining of some pain in her legs and chest (a bit).  Pain is managed just fine with Tylenol, so definitely not that bad.

The really noticeable lymph node in her neck is not any larger and may be smaller, so it appears the cancer is responding to the treatment.  Some of Amanda's other symptoms, like her coughing, etc. have noticeably improved.  Other than significant fatigue, the only noticeable long-term issue with the Chemo right now seems to be some minor neuropathy (tingling / numbing) in her toes.  We will have to watch that one, as that can develop into a long-term issue and is a noted concern with one of the chemo drugs she is taking.  Plan continues to be to complete 4 cycles (8 treatments) of chemotherapy and then do a followup PET-CT scan.  The results at that point will dictate what the next course of action (additional chemo and/or radiation or nothing)...we are going for NOTHING!!!  

Rest of today was much lighter as Amanda cleaned out her locker at school and the we went to the mall to pick up her grad dress (Stunning...pictures coming soon to a Blog near you...and Facebook too, lol!),  and did a little shopping for a dress to wear to commencement and some bling for her hair.  Grad is TOMORROW and her banquet on Thursday...then chemo Friday.  Oh well, at least some fun before the yucky part :)

Why NOT Me?

The school chaplain at Amanda's high school has an interesting take on being seriously ill, or experiencing some other sort of challenge in life.  Interestingly enough, he is also in the middle of fighting for his life as he is battling cancer as well.

I think it is a universal question that everyone asks when they are struggling in life, whether for health, financial, or other reasons.  I really like his outlook...



For anyone interested, Father Catfish (YouTube search: "fathercatfish") has a video blog that he posts to a YouTube channel.  Lots of interesting perspectives that are primarily targeted to the teenage crowd.  Think of it as religion with a humorous twist.

Head Shave Day!

No real issues with the first Neupogen injections, thank goodness!  Amanda is only mildly bothered by some bone pain and ache in her legs.

Well, hair has been coming out rather rapidly the past couple of days,  About the time that Zachary got annoyed when his sister started throwing wads of hair at him that she was pulling out, Amanda decided that perhaps she needed to finish it off.

We were originally going to take her to a salon to have the deed done, so an appointment was made for this afternoon.  In the end, Amanda decided that she wanted to do it at home and have some fun with it!  Boy did she!!

Check out the Mohawk - Gangsta style!

Ready for the final shave!

Might as well have fund with that also!

New Woman!  Kinda Cute, eh!

Next stop was the Wig Boutique to pick out some new hair and something for those warmer, more casual days.  Personally I loooove the purple head scarf - think it is called a BeauBeau. The ladies in the shop were simply awesome helping her pick the perfect wig.  She ended up with a Lace Front wig, so she can go with the no-bangs look and there is no wig-line.  One of the gals offered her services next Thursday to do a nice hair updo for Amanda's graduation banquet and dance next week.  Can't wait to see her walk down that isle!

Amanda with her new head scarf

Awesome New Hair!  

Mystery Solved!

Contacted the triage nurse at the Cross Cancer Institute.  The nurse (Shannon) was awesome and spent some time trying to figure out what was going on.  She used every trick in the book...looking at when dosages are recommended and not recommended and when they can be given, etc.  For instance, the manufacturer does not recommend Neupogen  injections in the 24 hours before Chemo treatment.  Well that criteria was met, but the Nuelasta only mention that injections were "on the schedule establish by your healthcare provider"...so close!!

Finally had to give in and page Amanda's oncologist to straightened it out.  Turns out we got the wrong information sheet from the nurse last week.  Doc wants the Neupogen as the prescription - now gotta figure out what's with our insurance company requiring such a high co-pay (although might have something to do with the $908.00 monthly cost for four injections...lol).

Off to sub-cutaneous injection school tomorrow and her first injections.  Here is hoping that she does not have the rather nasty pain side effects that this type of shot can give you.

Pharmacy Confusion?

Before I get into the main issue of this post, thought I would let everyone know that Amanda is generally doing ok.  Once again having to work at getting her to drink enough liquids, but her nausea seems better controlled - actually is eating - although she has very odd food requests.  Other than some mash potatoes and water, no food until tonight when she requests...Bean Salad!  Then she proceeds to pour enough vinegar on it to kill a normal human being...talk about whacked out taste buds.

Doctor Taparia increased her Ondansetron to 8mg three times a day with her Dexamethasone that she takes twice a day.  She also prescribed  Prochlorperazine as a rescue anti-emetic.   Amanda has some past experience with the IV form of  Prochlorperazine, and is trying desperately to avoid it.  To quote her, it makes her feel weird (basically makes her feel like she is literally crawling out of her skin) - would rather put up with feeling crappy than go though those side-effects.  Her main issue right now is her extreme fatigue.  She has been basically sleeping about 18 hours a day.

Back to the subject at hand...

Got a call from our pharmacy this afternoon that the G-CSF injections are a bit of a problem.  Apparently our insurance will only cover a month (4 injections) at a time, but the manufacture only ships in packages of 10.  No problem, they will store the balance (not happy due to the cost of the drug - about $250.00 per shot), but they were checking other stores for overstock.  I told them that would be fine as we did not need until the 19th.  I get home and started looking at the paperwork, and alarm bells went off.

We were told by our Oncologist's nurse that Amanda would be getting the long-lasting form known as Neulasta (pegfilgrastim) rather than the short acting Neupogen (filgrastim).  This made since to me, as she is only injecting herself on days 8, 12, 22 and 26 (28 days in a chemo cycle with treatments on days 1 and 14).  Based on my digging around other blogs and forums, individuals on Neupogen often are having to give themselves daily injections (bleh).  Problem is, the pre-authorization from our insurance company and the drug info sheet from our pharmacy was for Neupogen.   Quick call to the pharmacy tonight and they are confused as well...the original prescription was for only G-CSF with no further information other than the dosage level did match that for a typical dose available for Neupogen, not Neulasta.  Well, gonna have to wait until Monday to sort this out!

Time to go.  Got a pot of spaghetti on the stove, which Amanda seems to have an interest in...after eating a bowl of pickled beans (lol).  Go figure, but not complaining.  At least she is eating!

Chemo #2

Mom went with Amanda to Chemo.  Must say that Amanda is a bit of a "velcro child" right now.  We can't say that we blame her...wants her mom with her.

Treatment was in a different Day-ward today.  Not nearly as nice...no windows and patients were in closer quarters.  Kinda depressing environment, and I think the nursing staff is a bit affected.  They were far less personable - much more business like.

Use of the Power Port was WAY better than the IV route.  Amanda said there was some pain with the initial needle poke, but was good after that.  Treatment was faster this time, although they were still there for about 5 hours.  Once again, Amanda went from a relatively normal pale with some red highlights to her skin to a weird, gross shade of yellowish-green.  Kinda gross if you ask me.  Once again an emotionally draining day, but overall she is doing okay.

Onc Visit - More Blood work

Off to the Cross again today.  Quick set of labs and then a visit with Dr. Taparia.  Main topic of conversation was working on better controlling Amanda's nausea, as well as going over her numbers.

Numbers were not very good, considering only her first treatment.  WBC count was down to 2.5 (normal range is 4.5 - 13.0) and her Neutrophils (a specific type of white blood cell) were down to .7 (normal range is 1.8 - 8).  In addition, her Hemoglobin count was below normal - explaining her fatigue.  Basically means that Amanda now has to take a G-CSF (granulocyte colony-stimulating factor) injection, Neulasta 4 times a month to stimulate her white blood cell production.  Side effects can range from minor to significant bone-pain...guess we will cross that bridge when we get to that next week when she gets her first injection.

Numbers were okay enough to not post-pone treatment tomorrow, so at least no delay in the Chemo.  Just need to make sure that she does not get one of the nasty flu bugs that seem to be going around right now.  All-in-all, Amanda is doing well right now.

Power Port Time!

Back to the Cross Cancer Institute to have Amanda's Power Port put in.  Because of concerns with infection, Dr. Taparia insisted on a full blood workup, especially since we were now 7 days post-chemo.  After a few vials of blood, off to get her port put in (guess numbers were OK!)

Nurse came out to the waiting area to discuss the port, complications, after surgery care, etc.  Basically the surgery is done with a local (crazy!) anesthetic.  A small incision is cut in the neck and a guide wire is run through the vein that is being used for the catheter.  A larger incision (about 1.5 inches) is then cut on the right-side chest and the device is placed.  Surgeon then pushes the catheter under the skin to the first incision.  The guide wire is then used to position the catheter the rest of the way.  

Anyhow, upon the advice of the nurses in the Chemo Ward, Amanda requested the slim model.  The surgeon came out and said that they don't use them often (most patients he sees are not as young and slight as Amanda), but that he would look.  Came back with good news that they had one for her!  Also offered to stitch up the larger incision rather than use the staples that he typically uses...Amanda totally jumped on that offer!!

Amanda actually did really well.  Spent an hour in the dayward to recover.  Was one of the last patients there and actually had an interesting time with the nurse assigned to look after her.  Turns out the nurse was a young cancer patient and she had a lot of great advice for her.  Once again, the experience at the Cross was AMAZING!!  Amanda had a relatively good evening, only experiencing some minor pain that evening.

Quick Update...Doing Better

She is doing better.  We talked to the triage nurse yesterday and she took the initiative to page Amanda's oncologist and increased the Ondansetron to 3x a day.  It has helped and we are actually seeing some smiles!

Also got the paperwork back from her doctor to have Amanda exempted from her Provincial Diploma Exams.  These are standardized tests that typically count as 50% of your final mark in your grade 12 classes.  She was suppose to have to take exams for Language Arts, Physics and Math.  Now, assuming the exemption request is granted, they will just use her classroom marks.  BIG weight off of all of our shoulders!

MUGA scan Today

Seems one of the Chemo drugs she is on, Doxorubicin (also know as Andriamycin - the "A" in ABVD) can cause damage to the heart muscle.  Today's test is a base-line test to look at the efficiency of the Left Ventricle.  Basically entails inserting an IV line, removing some blood, quick test and add some radioactive agent and then re-insert the blood.  45 mins or so for 2-3 pictures and done...unless you are Amanda and those blasted veins of hers!

Technician got the IV in quickly, but as soon as he added any pressure the vessel blew.  Thoroughly freaked (I had warned him of the issues), he immediately got a nurse.  Meanwhile Amanda, still feeling like crap, turns an interesting shade of white and begins getting sick.  Think her body was announcing that it was done, thank you very much!  In the end, they got her on a bed and the nurse was successful in finding a good vein.  Test was completed without further issues, although we once again took about an hour longer than usual.

Good News!  Discovered bottle water tastes better, so she is drinking more without arguing with her...yay!

Next up is getting her PORT on Thursday.

After Effects

Wow!  Got one sick puppy on our hands.  It was definitely a long weekend and Amanda struggled with controlling her nausea.  She went home from her treatment with Dexamethasone and Ondansetron (Zofran) 2x a day and was given Domperidone as a rescue (useless).  Nausea is tolerable, but not really controlled.  She basically is off food and getting water down her is a struggle...apparently it tastes bad!

We ended up calling the triage nurse on Friday evening, and she was helpful in giving some hints but suggested that if things were not controlled in the next day or so to call back and they could prescribe something different.  She did not recognize the Domperidone and though that Metoclopramide (Maxeran) would be more effective.  Told her that Amanda has used this drug in the past to abort bad migraines and she really has bad reactions to it - I honestly think that she would rather be vomiting constantly rather than go through the "weird" restless feelings she gets on that stuff.  She suggested that there were other options - especially for rescue drugs.  As suggested, we called back today because she really was not coping very well at all.  

Lesson for the day: They put the bottom of the barrel on the phone on Sunday.  Never call then!

I was out of the house when Amber called.  The nurse she talked to was unbelievable!  She actually had the audacity to suggest we feed her chicken soup, jello, etc.  Well DUH!!  What parent does not know about the kinds of foods you try and feed someone that is nauseated - only there are levels of nausea, and Amanda was not eating anything!  Then next ridiculous comment was "you are just going to have to stop babying her".  UNBELIEVABLE!  We have a kid that is feeling the worst she has ever felt, is going through an experience that no one should have to, and she has the gall to tell use to stop babying her...Wrong Statement!  Amanda is going to be babied like she has never been before and that is not stopping until this is done. 

I walked in the house shortly after the conversation and Amber was somewhere between tears and being insane with anger...kinda scary if you ask me!  After calming down a bit, we talked a bit more and realized that it might be that Amanda was also fighting a migraine.  I CALLED back this time (same nurse).  First thing out of her mouth was"I just talked with your wife".  I told her I realized that, but I was wondering if there might be any issues with Amanda's abortives and the drugs she was currently on.  Told me she could not comment on that and to call our pharmacy...OK...now I'm mad.  Reiterated to her what our conversation with the nurse on Friday was about and was there an on-call physician that she could contact so that Amanda could get some relief.  And here comes the meanest thing I have ever heard out of anyone's mouth.  "Yes we do have a doctor I can contact, but I am not going to bother him with this"...I hung up the phone.

First Treatment

I had to work today, but only for the morning.  Dropped my wife and Amanda off for her 9:15 appointment for her first Chemo session, and I was back by 12:00...just in time to pick them up and go home...did not leave until closer to 3:30pm.  Nothing EVER goes as planned.

Our daughter's veins:  They struck again!  To quote the head nurse on the Day Ward "these are the smallest veins I have ever seen!"  Took them over an hour to actually get a suitable vein.  Then, because of the size of her veins, they had to significantly dilute the drugs PLUS they had to spend a lot of time between drugs flushing the lines.  It was a long day!

This brings me to then next topic...Chemo delivery systems.  When we talked with Amanda's oncologist, we warned her about this very issue.  She assured us that the nurses were good, but if there was a problem they could insert a PICC line.  We had done a lot of research at this point and asked about a Port, but she kinda acted like this was not an option in her eyes.  A PICC allows the drugs to enter the blood stream just above the heart muscle through a catheter in your vein.  Basically does not allow the drugs to touch the veins directly, but it is rather cumbersome (basically imagine an IV line hanging semi-permanently out of your arm) and certainly not something that goes with that all important Grad Dress!  A Port is implanted just below the skin and also has a short catheter directly above the heart and is usually implanted in the upper chest.  It does show a bit because it causes a small protrusion, but it is sealed by your own skin and allows the patient to be active (swimming, non-contact sports, etc.).

Well, the nurses on the unit commented that the Power Port models are relatively new systems in Canada and a lot of doctors are not comfortable with them - like to stay with the old ways.  The nurses contacted Amanda's oncologist and insisted that she get a port...short exchange later and they won - port to be implanted next week (yay!)

This brings me to my final thought and lesson of the day.  If you need anything done, ask a nurse!  We are on a steep learning curve, but we are learning!

Next Office Visit & Chemo School

At the Oncologist office again today.  Basically needed to review the results of the bloodwork, etc and to go over any last minute questions before Amanda's first Chemo treatment on Thursday.

Doctor confirmed that Amanda has "Hodgkins Lymphoma, Nodular Sclerosis type, Stage II-B, unfavorable" The unfavorable was due to an ESR of 91 (normal is under 10 and they don't like the rate to be > 30 with "B" symptoms). Still no results from the bone marrow biopsy (kinda frustrating!).  We are hoping that it is negative as a positive result would will jump the staging up to stage IV-B and the five year survival rate would have significantly reduced from the 85-90% that her current diagnosis carries with it.

Long story short, looks like that Amanda is going to see about 5-6 months of treatment with 4 cycles of ABVD Chemotherapy and possible radiation therapy after that. The oncologist was hoping to avoid the radiation when we visited last week, but with the "B" symptoms and the unfavorable status there is a strong chance Amanda will have to endure that therapy as well once the Chemo is done. Chemo treatments are scheduled for every 15 days for the next 4 months at a minimum and this may be extended to 6 months. Gonna be a tough road for our girl, but she is as strong as there is and we have no doubt that she will pull through this. Tricky thing with this regiment is that your counts start to bottom out around day 7 and only begin to improve around day 14.  Problem is that she gets her next treatment then.  Patients on the regime really never have a chance to recover from the previous treatment.  We are warned that Amanda most likely will have to delay treatment a couple of times as her counts will be too low.  God obviously has something special in mind for our girl, and this is a part of her life journey that is needed in order to fulfill her purpose.


Oh...interesting side bar...the pain that Amanda has had consistently since her Excisional Biopsy on her right side has magically left ever since she got those antibiotics in the ER on Thursday...hmmm, perhaps the ER staff knew what they were talking about.  Maybe there was another reason her WBC were at 14,000 and 18,000?

Next stop was Chemo-school.  Probably one of the most interesting experiences we have had yet.  My wife, myself and Amanda sat in the back of a SMALL room (only row with 3 seats...plus had a nice counter behind me I could put my Tim Hortons on - sorry, gotta be Canadian to get that one!).  There were about 8 other new patients there (no-one under the age of 40).  After the session, the RN doing the session asked "for the family in the back to stay"...she was SOOOO amazing.  Sat down and had a one-on-one talk with Amanda,  She must have spent 45 minutes with us basically giving Amanda all of the little hints and really tailoring information to her age.

I thing that is one of the hardest things that she is having to deal with.  There are not patients around that she can identify with in terms of age.  It is one thing that has us questioning the wisdom of not getting her treatment done through the Stollery Childrens Hospital, but the nurse assured Amanda that she would be coddled and mother by every nurse there - they were all moms, and they would take care of her - it was a special moment that I think I will always remember and be thankful for.

Oh...Happy Birthday to my Wife!!!

First ER Visit: Oh Joy!

Wife and I got home from work, and Amanda was in obvious distress. Told us that the night before she was getting chills, and that she was really hot and not feeling well. Quick check with the thermometer...102.8 (39.2 Celsius for our fellow Canadians). Made a quick call to our Provincial Health Link service and they told us to take her to Emergency.

Interesting thing about Emergency rooms and Cancer Patients...Got to the triage nurse and confirmed elevated temperature and pulse rate was about 125 at rest. Of course we are concerned about an infection from the Bone Marrow biopsy and Amanda's is also complaining of a new pain in her upper right chest that has us concerned of a possible blood clot. Got sent over to registration and no sooner did she sit down, an orderly came over, put a mask on her and immediately took her back to a bed! I had to stay and register her and get her chart from the registration desk.

Anyhow, long story short, ER doc is convinced Amanda has an infection somewhere and a possible clot. She warned us to expect an overnight stay, but needed to consult with a hematologist to have her admitted. In the mean time, she hung a round of antibiotics and ordered some additional blood work (oh goodie - more needles!), chest X-Ray, etc.

Around midnight, in waltzes in the Hematologist...I'm pretty sure he is an intern, and if he is I am just about to the point that any interns that see my daughter will immediately be shown the exit! FIRST thing out of his mouth is something to the effect of "I came down here, but expected to see someone much sicker"...REALLY! Keep in mind that at this point Amanda has had two bags of Saline and the antibiotics had been in her system for over 2 hours. She was feeling better admittedly, but what an idiot! Tells us that her d-dimer is elevated but not significantly enough so is cancelling the lung scan. Her WBC levels are at around 18,000 but that they were at 14,000 two days ago so he was attributing that to her disease. Basically punted us out of the ER...which franky is just fine with everyone by now.  My wife and I get the impression that the ER staff are miffed at the situation, especially when one nurse comes in and says "we get to go home...for now". Kinda funny and kinda not so funny. Oh well we wanted to go home, and Amanda seemed better.

Diagnosis

Amanda has been struggling with extreme fatigue since October of 2012. At the time, we suspected that she was not doing well on her migraine medications. In any case, it got bad enough that she missed a couple of weeks of school in December and had to pull out of her grade 12 AP Calculus course when she missed most of the beginning of the instruction for the course. Also missed a number of soccer practices, which is competely unlike her!  Amber and I were concerned enough that we ended up getting her referred by her pediatician to see a Cardiologist as well as having a long conversation with her Neurologist about trying to wean her off of some of her medications she takes to reduce the some of her migraine sypmtoms; one of which is notorious for causing fatigue.

In January of this year, a lymph node on the right side of her neck swelled up to about the size of an orange, but other than a cough she also developed, she did not have any other symptoms. We took her into a local doctor and he suspected that she had an infection and prescribed antibiotics. Only thing that seemed out of place was that weird cough when the swelling started. The swelling went down, but not away and then came back again - as did the cough. Back to the doctor and another round of antibiotics. Once again the swelling went down. Around spring break (end of March), Amber and I were in Victoria, BC for a quick holiday and Amanda's grandmother called us about the lymph node being swollen again. She took her back to the same doctor and he basically told Amanda that she obviously had an "over-active" node and that if it did not go back down in 6 months to come back and he would refer her to a surgeon to have it removed. Not satisfied with that response, Amber took Amanda into her doctor for a second opinion. Apparently the look that Amber's doctor gave mom was kinda scary. She basically told Amber that Amanda needed to be seen by a surgeon ASAP. Next thing we knew, things started moving in very fast and scary directions.

The ENT that Amanda was referred to was an "ENT-Oncologist".   Basically specializes in the surgical aspects of neck and throat cancers. He did a thorough examination and then scheduled her for a PET-CT the next day and a FNA (Fine Needle Aspiration - type of biopsy) the following day. We were back in his office about a week and a half later and were told that the PET-CT was positive with significant uptake in her neck, collar bone and chest area, but that the FNB was negative...then he told us that he did not believe that result. End of the day; surgery was scheduled two days later for an excisional biopsy. Another week wait for the results and we had confirmation...Hodgkin's Lymphoma. We had a pretty good idea what was coming, so it was kinda odd when we got the news.  There were no tears (yet); it was no surprise to any of us at this point in time.  Amber and I were watching Amanda's health significantly decline over the past few weeks, and additional symptoms were beginning to show (night sweats, constant fever). 

Amanda saw her oncologist for the first time on May 21st. Dr. Taparia is a very nice lady that once again confirmed her diagnosis.  Unfortanantly, Amanda had to do a couple of additional tests to "stage" the disease. First up...bone marrow biopsy. Apparently Amanda's bones are exceptionally healthy as there was a significant struggle to get the sample - poor girl...talk about excruciating pain! Then she was off to get more lab work and a lung function test (apparently one of the chemo drugs she is going to be on can affect your lungs in rather nasty ways, so they need to know if her lungs can handle it and to get a baseline measurement). 

Welcome!

This is a Blog for family and friends that are interested in following how Amanda is doing with her struggles with Hodkin's Lymphoma.  When we think about it, we do have quite a large family and extended family and it really would be quite impossible to keep up with everyone with her battle in any other way.  It seems like a good idea to provide a central location where everyone can be updated on how she is doing and some of the stories that we have to tell...some good, some bad, some funny, some not so funny.

A ridiculous amount of "stuff" has happened to our daughter and family in a very short period of time.  Quite frankly, we could write a book that would be her story over the past 6+ months.  On that note, here we go!!