.... and so it begins.

So the time I have been dreading is here, and I must admit - so far so good!  Aly was at the Cancer clinic on Friday to begin her next phase of treatment called delayed intensification (sounds horrible). She underwent another spinal tap, and received two additional types of chemo - vincristine ( which she has had before) and doxorubicin ( aka `the red devil). (http://en.wikipedia.org/wiki/Doxorubicin).   This drug has a number of serious side effects, like hair loss, vomiting, heart arrhythmia ( long term heart complications too), and decreased white blood cells ( will make her neutropenic which means she will have a compromised immune system).  We have been told that her white blood cells will begin to decrease around 7-10 days after treatment, and since she will be receiving this drug on an on-going basis for the next few month we need to prepare and ensure that Aly is not exposed to any germs or viruses.  Some of you might know that we have ( or are in the process) of removing all of the carpets from our house and putting down laminate flooring and we have also purchased an air purifier with a UV light to assist in reducing the number of airborne viruses in our home.  We also be limiting the number of visitors that will be coming into our home over the next few months.  I have spoken to a few families that have gone through this phase of treatment and it seems that everyone deals with it differently.  Some have continued with life as usual, others have stopped all visitors to the house ( including family members) and others have just been sure to wash hands thoroughly and limit exposure to small children or adults that are sick.  I feel we will be doing a bit of a combination of this.  Some immediate things we have already started such as, no more lip kisses with Aly - all kisses must be on her cheek, head etc., hand sanitizer can be found throughout out home, and we are also ensuring that hands are being washed ALOT.  We also plan to continue our long walks at local conservation areas - the fresh air seems to be good for her and the exercise will also be good for all of us.
  The other part of this phase of treatment that I have not been looking forward to is having to give Aly steroids again.  She is wiser now, and giving her meds has become a challenge and I need to get REALLY creative on how I administer these to her.  Currently she has to take an antibiotic that is in pill form, a liquid form of steroids and a liquid anti-nausea med when needed.  The pill is a really hard one.  So far the only thing that has been successful is by grinding it up into a powder and mixing it with honey.  She fights me, but she seems to like the sweetness of the honey.  As for the anti-nausea meds, I had success this morning by putting it in her shreddies and milk.  Once the milk was absorbed into the cereal she didn`t seem to even notice.  Now the steroids are a whole different story - I can`t risk putting them into a drink or food in case she refuses to eat or drink what I give her.  We are only given the exact amount of dexamethazone that is needed so unfortunately I have to give it to her orally via a syringe ( with no sharp of course).  She hates it and it is a big fight each time.  We try to tell her that it`s her important medicine, but she wants nothing to do with it.  It is times like this that I hope her appetite increases again and I can begin to put it back into her milk - - that is how we got this through this the first time she was on steroids. I am not sure what impact the steroids will have on her appetite this time -- but we did notice that she ate alot tonight at dinner.  She had a lot of roast beef, then wanted ice cream, then picked up another piece of beef while she finished up her ice cream, then finished it all off with a pear.  I think I might begin to document what she eats this time.
  Anyway, I guess what I am trying to say is that so far, so good.  Her morale seems to be good, she is still a lovely sweet little girl and I am hoping the shorter period of being on steroids will not impact her mood as much as it did the first time.....fingers crossed.  We are back to the clinic tomorrow for more chemo then have a break for a few days before returning on Friday.  After that, we should be back to weekly visits on Fridays.

.....Aly has a new buddy!

So today we got a new puppy.  A chocolate lab named Presley.  This could be the craziest thing I have done, or it could be a great thing for Aly.  Brian and I often feel bad because we think Aly is missing out on being with her friends at daycare.  Although she has not been neutropenic in some time, unnecessarily exposing her to germs and sniffles is something we are trying to avoid.  My justification for getting the puppy is so that Aly has a little friend and playmate that she can play with. ( ... and someone was nice enough to give her to us) We have our little Lola as well ( a 5year old Yellow Lab) but she likes to spend most of her day snoozing on the couch and does not have the energy to match Aly's.  Aly's immune system will be vulnerable over the next few months and we will need to limit the number of people that she is exposed to.

Aly's next phase of treatment ( delayed intensification) has been pushed out to begin on Friday October 28th - - and I am nervous.  I have mentioned in before in earlier posts, but the steroids will begin on Friday ( one week on, one week off - for 8 weeks) ..... and she will also receive the "red" chemo drug that some refer to as the "red devil" - - and nothing about that sounds good.  I can't imagine anything being worse than the first 28 days of treatment that she had ( with 28 days of steroids) - - but I am mentally preparing my self for the next 2 months ( ....but this time add a puppy to all the drama)  If my calculations are correct, she will have one admission in late November to KGH to receive a drug that needs to be run over an a couple of hours, and should be finished this phase of treatment about 2 weeks before Christmas.  My only hope is that she is well enough to celebrate the holidays with our family.  As long as she can have a short visit with family, exchange some gifts and maybe have Christmas dinner ..... I will be thrilled.  Fingers crossed she does not catch any "bugs" over the next few months.  She has been given the flu shot and I am planning on getting mine on Wednesday.  Ideally anyone that will be exposed to Aly should have the flu shot.  I was always one of those people that questioned some immunizations, and to be honest didn't realize how dangerous a flu could be -  but I can tell you now, I will be getting my flu shot every year from now on!

..an upset stomach and a lesson learned.

Well as you might know Aly had a spinal tap in addition to 2 rounds of chemo last week ( Tuesday) and up until now we have not had any real side effects of the treatment ... until Thursday.  When Aly woke in the morning she was acting the same as usual, however her eyes did look a little red and she seemed a little off.

My mommy-sense ( slightly similar to spidey-sense) made me think that something was off a bit, and for a moment my heart sank but I took her temperature and everything seemed OK.  It wasn't until I was making her some toast that she mentioned that she did not feel well.  She said that she felt like she was going to throw up, but her energy had increased a bit so I actually thought she might be kidding.  She was sitting on the counter (next to the toaster) and I was standing in front of her, so I let her down and she walked down the hallway towards her room.  I heard her cough, then I heard what sounded like her choking on something - as she yelled "I am throwing up....." So I rand down the hallway and she had thrown up a bit in hallway.  She hadn't eaten yet so it wasn't as bad as it could have been but still - I was worried considering this whole diagnosis began almost 4 months ago when she last threw up.  I calmly ( yet immediately) contacted the oncology nurse and left a message about what had happened and asked that she call me back.  It was a Thursday before a long weekend and it would be true Aly style to get sick again during a long weekend when no-one was around, so I wanted to get someone on the phone ASAP to get their opinion.  While I waited for the nurse to call me back, I took her temperature and it was 35.5, so well below the doomed 38.  Aly seemed fine, started running around and had all the energy she has had in recent days so I was slightly confused by her recent throw up.  When the nurse called back she was a bit surprised that Aly had never thrown up before following her treatment.  I had given her some anti-nausea meds the day following her procedure, but didn' think I needed to give her any on this day ( perhaps I was wrong). Apparently this was a very common side effect based on the chemo that Aly had been given just 2 days earlier and as we progress through her treatment the infusion of meds is, at times, accelerated.  I guess this was a first for Aly and a bit of a lesson learned for me.  Tougher days may be ahead, so I shall enjoy the tremendous energy she has right now ( she is full of energy non-stop ALL day long) and begin to prepare myself both mentally for the months ahead.

So many numbers to remember .....

So I have realized that throughout this blog I talk about Aly's bloodcounts, what it means to be neutropenic, and the importance of keeping her healthy and away from those that are sick with colds, sniffles and the flu.  I was at clinic with her today waiting for the results of her blood work and realized that I have never really taken a step back to see how her levels have fluctuated since she was diagnosed back in June.  So, tonight I pulled out all the print outs and put them into EXCEL and decided to graph them ( one of my favourite things to do with numbers and data....).  It was interesting to see how low some of the numbers have been and what awesome improvements there have been over the past few months.
Here is an image that shows the fluctuation of Aly's blood levels since diagnosis.  I have also listed the definition as well as the normal ranges.
WBC = White blood counts ( 115-135) , NPH = Neutrophils (1.5-8.5), HBG = hemoblobin (115-135) , PLT = Platetes (150-400)
When Aly was diagnosed back in June her WBC was 3.6, her NPH was 0.32, HBG was 71 and her PLT were 39.  On her most recent blood work from today here are her current results: WBC=7.4, NPH=2.3, HBG=119 and PLT=413.

Today Aly visited the clinic and had her bloodwork taken, 2 different types of chemo ( Vincristine http://en.wikipedia.org/wiki/Vincristine and Methotrexate http://en.wikipedia.org/wiki/Methotrexate) in addition to a lumbar puncture ( spinal tap) to check the spinal fluids for leukemia and give chemo to the spinal fluids.  We arrived at 9am and spent the next 5 hours waiting for bloodwork results and for our chemo to arrive from pharmacy.  Just after lunch it was time for Doctor's to perform the sedation and spinal tap procedures.  The good news is that Aly rarely has any issues with sedation - we were told today that the last time this procedure was performed her oxygen levels did drop a bit, however that is a normal reaction with that type of sedation.  Today there were no issues and apparently the wee bugger snored through the whole procedure.  When she woke she ( as usual) asked that they bring her in  the dvd player so she could watch the movie WALL-E.  I am glad that she loves to watch movies because after this procedure she needs to remain on her back, or side for about an hour in order to ensure the medication reaches the appropriate areas.  After that time she then received her Vincristine and Methotrexate via IV over the next 30 minutes or so.  Once we were finished for the day, Aly got dressed and walked out of the clinic as though nothing happened.  Looking at her you would never know that she had leukemia.

Here she is after her spinal procedure.  She is eating a banana, watching WALL-E and getting the remainder of the chemo via IV.

After dinner we went for a nice walk at Lemoine's Point and celebrated how brave she was today at clinic with a chocolate cupcakes ( with sprinkles) and a special sparkler on it - - she was thrilled!

We return to the clinic on October 14th for her final treatment in Interim Maintenance I.  We will then be moving into some tougher times - the next phase is called Delayed Intensification - it lasts 8 weeks, and she will be back on the dreaded ( by me) steriods ( dexamethazone) for 7 days on and 7 days off then 7 days on again.  It will be tough but if we survived 28 days of it - this should be a breeze!