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.