Neutropenic

Well Aly is now neutropenic - - what timing.  We just wrapped up 2 weeks of daily clinic visits for chemo, and has not had chemo for just over a week.  That all seems great, but what that also means is that her blood counts drop and she becomes neutropenic, which means she has no immume system.  That started last Tuesday at clinic ... so I have been taking precautions ever since.  Aly has no interaction with kids, and we limit adult visitors to immediate family.  She is not allowed to go to public places like the mall, or movie theaters, so it has been a bit of a challenge wrapping up my christmas shopping, but luckily granny and popa live close by and her daddy got home from BC on Thursday.  She doesn't understand why she can't got to these places and I feel horrible, because we kept promising her that when her daddy got home we would take her to the new Chipmunk movie - - hopefully it stays in theathers for a bit longer.  We go back to the clinic tomorrow to see how her blood work is.  I hope that her counts begin to improve considering Christmas is in less than a week.  We have lots of family coming up on Christmas day and I want Aly to be able to visit with them, exchange gifts and have dinner - - but I will not put her health at risk for it.
If Aly gets a fever during this time, she needs to go to the hospital immediately.  I must check her temperature at least 5 times a day, and I love nothing more than feeling that cold clamy forehead of hers ( just like her dad).  Who knew I would love that so much - -but it always puts a smile on my face.  I am worried about her be exposed to germs right now, and in a house with 2 adults, a 3 year old, a yellow lab and a new chocolate lab puppy ... that is a challenge.  I am also fighting a horrible cough, one that I got from Aly and I think she picked it up during our last visit to emerg. .... and I am washing my hands like crazy so she doesnt get sick again.

Now although she is neutropenic - - you would never know it.  I am not sure I have seen Aly with this much energy, or this happy since May of this year.  She is full of energy, running around, wanting to play hide and seek all day, making crafts, baking for the holidays and taking the dogs for walks.  It is so nice to see her like this, and I hope that we are over the hard parts of treamtent.   I take each good day as I get them, and it seems to help me get through those not so great days.  I look forward to this year coming to an end and hope that 2012 brings much better news and health and happiness.

Not a great day.....

Well we were admitted from Tuesday til Friday and were sent home knowing that homecare would be in to see Aly once a day.  She had a small IV pump hooked up to her port and it administered antibiotics to her every 6 hours.  The Tuesday following our discharge, we returned to the clinic to pick up where we were supposed to be last week - bloodwork, LP and admission for an overnight treatment.  The need to stay over night is mainly just to ensure that Aly gets adequate fluids as the chemo she received has a tendency to be hard on the bladder. Well her counts were good, so the LP happened and we made our way up to her room once it was ready.  I normally don't mind being in the hospital, but the room we were put in, just happened to be the room where it all began.  Rm 1034 ( I will never forget that) was the room we spent our first few nights in when she was first diagnosed and I just couldn't get comfortable in there - - luckily it was only for one day.  After being discharged from that admission we still visited the cancer clinic daily for her chemo treatment of cybaratine. Aly had no issues going to clinic during that week, mainly because we kept her gripper in, so there was no need for the nurses to access her so she was happy there were no needles, but that all changed on Friday when they had to take her gripper out - - she had a COMPLETE meltdown!  I knew we had to return  on Tuesday and I was already worried about how she was going to react.  Well that was today - and she was not happy.  When Aly woke up this morning she was fine ... she even reminded me that we had to put on her patch ( to numb the area for the needle). But, for some reason she got really quiet when we got into Granny's car, and she didn't say a word the whole trip down in the car.  She was very cuddly and whiney once we arrived at the clinic and I don't think she left my arms once.  Even when the doctor examined her, she had her arms wrapped right around my neck.  Her counts were good today and she received her 2ml of chemo run over 15 minutes then we were off.  We decided to keep her gripper in so she didn't have to get poked every day this week and hopefully that will help with her anxiety.

  There is no way to describe the rest of the day, except just saying that it sucks.  When we arrived home, Aly was hungry and asked for some of Papa's cereal ( Shreddies) so she ate about half a bowl and had juice.  About 5 minutes after eating that she started to throw up, and throw up and throw up.  She gets so scared when she gets sick -  it must be that feeling when its just about to happen.  I think I changed her 3 times and myself twice.  As soon as she was sick, I felt bad but I had to leave her alone and run and put the dogs outside.  Considering she just received chemo, although a small dose, her fluids are still considered toxic so I wanted to make sure the dogs were kept away from it.  I then had to grab the proper gloves and paper towel so I could clean it all up after consoling her.  Nothing is worse than a child wanting the comfort of her mom, and here I am holding her with these blue gloves and trying to keep the puke and other fluids away from my skin - how loving.  Once I got it all cleaned up I tried to get her to have a nap in her room, or mine, but she just wanted to be out in the living room on the couch.  So I put down a blanket and she soon feel asleep.  She has now been napping for about 2 hours and has only woken once to be sick.
  Now throwing up is apparently a normal side effect of receiving chemo, some of the kids at clinic throw up all the time, but this is somewhat new for Aly.  Her chemo treatment was only 2mL so I can't imagine that is what made her sick, but I also hope she didn't pick up a bug somewhere.
So now the dogs are asleep and so is Aly - - perhaps the smartest thing I can do right now is also take a nap. It could be a long night.

Admitted

We we were supposed to be admitted this week for an overnight treatment, however an unexpected blood infection and caused a bit of a change to the plan.  The only thing that didn't change, is that we still got admitted.  The recent trip to emerg for a fever meant that we had to have blood cultures done - - those results came back on Monday and showed a positive result for a blood infection - - so her second phase of delayed intensification is now pushed out a week and will begin on the 29th, if all goes well.  Right now we are in KGH and Aly is currently on anti-biotics to fight this infection.  She is not feeling her best, as she has also developed a cough since Sunday.  She has spiked a couple of fevers throughout the night and today, however we just took her temp about an hour ago and she was sitting at just over 36 - which was great. 
  Aly was definitely out of sorts today, and slept for about 4 hours this afternoon. Needless to say she was wide awake this evening and managed to just fall asleep about 10 minutes ago ( 10:30pm)

   Tonight she decided that she wanted cheese slices and she wanted them NOW.  I thought I had thought of everything and grabbed all of her favourite things and stocked the hospital... fridge with them - - but I have no idea how I could forget her cheese slices!!  She kept asking me to call someone who could bring her cheese slices, then she asked if we could go for a walk and maybe see if one of the nurses had some ( that made me laugh).  So we put on her shoes, grabbed Wall-E and went for a walk.  Every nurse and PCA we passed said hi to Aly - - and she in turn looked at them and said - - "do you have any slices of cheeses?"  It was so cute!  What wasn't cute, was how she reacted when they all said no.  I had missed the cafeteria by about one hour, and I was trying to think about how the heck I could get her cheese slices - - then I remember that our friend Andrew had sent me a text just last night saying that if Aly needed anything to let him know, as he lives close by, and he could bring it down to her.  I don't think he expected a message back from me so soon ..... but I sent him one and within an hour he was in her hospital room with a 24 pack of Black Diamond Cheese slices.  The look on her face was like Christmas morning - - too funny.  She ate, slice after slice after slice, then she asked if she could hold the whole package while she watched her movie.  Andrew and I looked at each other like it was some crazy addiction - - and there she lay in her bed, her arms wrapped around 21 slices of cheese watching "Over the Hedge".  Soon after, she fell asleep!

Thanks Andrew - - I will be forever grateful!

...fever time again

Well it happened - her fever hit 38.4, so I made the call to page Aly's oncologist.  I knew exactly what she was going to say "....you need to take her to emerg."  So I gathered a few things I knew we would need, like her DVD player, some movies and some snacks, then headed down to KGH.  We were seen immediately by the triage nurse and Aly was very cooperative when the nurse took her temp and oxygen levels.  Her temp came up as 37.4 but I didn't feel about bringing her down because at home I took her temp about 3 times and each time got a reading of over 38.  There wasn't a nurse in emerg who was experienced, or comfortable in accessing ports, so they had to call down a nurse ( that we knew) from Peds and she was great with Aly.  First she put a gripper in the Pablo ( the character from the Backyardigans) stuffed toy that Aly brought with her, then she was able to access Aly with little drama.  We waited the usual 60 minutes for the results of the bloodwork and we were pleased to hear that she was not neutropenic and her white blood count was decent.  Now we just had to wait for a urine sample before we could be discharged.  So waiting for a child to pee is far worse than waiting for paint to dry, especially at 2am.  It seems like she hasn't peed since about 7pm - how is that even possible when she is hooked up to fluids.  So they then ordered some additional fluids to get things moving. We finally got our sample and once the nurse returned to remove her port, we were able to leave.  I think we got home just after 4am - wow what a night.  But it wasn't over for me.  Aly wanted to eat when we get home and also watch some TV - - she seemed to be wide awake.  Now I couldn't leave her up all alone, so I made her some snacks and watched some TV in bed with her.  She tossed and turned for some time and eventually fell asleep - - just at the same time the puppy woke up - lucky me.  Well I saw the sun begin to rise so I decided to make some coffee and watch the news - - I would have the rest of the day to nap :)

...borderline fever

Well its after 3 am and am laying in bed with Aly. I heard her yelling for me at about 215 am and came into see her. She said she had a bad dream, and I could see that she felt out of sorts. After filling her request of wanting garlic bread, I went in search of the thermometer to take her temperauture. Why do kids always, well at least Aly, have to get fevers in the middle of the night? Why can't it happen sometime between 8-4 Monday thru Friday? Anyway, over the past hour have taken her temperature about 12 times. The magic number is 38. When her temperature reaches 38 need to page the oncologist, regardless of time, and 99% of the time, take her down to emerg. Well tonight her temperature is 37.8 ......so close. BUT, hve always been told " do not round up" .....it hs to be 38. Well it may not b 38, but its close enough that I will not be leaving her side tonight.
  We had a "week off" from treatment this past week, but as of last Friday her bloodcounts were good and she was not nutropenic.  The chemo causes her white blood cells to drop, but at the same time, the steroids increase them. Her last dose of steroids was Friday morning, so am curious as to what her counts are.
So its now 330 and she is fast asleep. I want to take her temp again, but dont want to disturb her. I think tomorrow, assuming her fever doesn't spike will be low key and kept away from others, just cse her counts have dropped.  We return to the clinic on Tuesday for bloodwork, and if her counts are good we begin the next phase of treatment which begins with n overnight admission for chemo and daily visits to the clinic. Its gonna be  long week ( not to mention the fact that Brian heads back to BC to work on Wed)
 .....good night! (....temp is still 37.8)

WALL-E

Today Aly grabbed her chest and said - - "ouch my wall-e hurts".  A stranger standing next to us in line looked at me with such a confused look.  I didn't really feel like explaining it her, but that almost changed when she began to roll her eyes because Aly was beginning to act out, whine then started to cry.  The real me wanted to lost it on her and say - - would you still look at her like that if you knew she had leukemia?  If you knew she had cancer would you still look at me with such judgement like I am a bad mom because my 3 year old isn't behaving a like a perfect child in the check out?  I decided to bite my tongue because I feel I would have made a scene much larger than I wanted, and I didn't want to draw that kind of attention to myself or Aly.  But there was a little part of me that wanted her to understand that everyone has a story before she goes begins to judge us based on Aly's behaviour.

Anyway, as some of you reading this might know cancer patients that receive regular chemotherapy are given a port that allows easy access to obtain blood and give chemo, transfustions etc ( see below).  It is implanted below the skin and ties directly into a vein.

Well each of the kids at the cancer clinic, and those we met on the pediatrics floor all have names for their ports and for the IV unit that gives them fluids, drugs etc.  A common name that kids use is George - - well not Aly.  Her port is called Wall-E and she also calls her IV pole Wall-E too.  It's amazing how she identifies with it and that naming it seems to bring her some comfort.  As soon as we get to clinic each week Aly always asks for Wall-E and will even say hi to the IV pole when the nurse brings it in.  So back to the first line of this blog today .... when she said her Wall-E hurt, she was referring to her port.  Sometimes she will knock it, or want me to rub it ( which to be honest gives me the willies).  Now I know Aly LOVES the movie Wall-E, but it's funny how much she loves it.  Not only are her port and IV pole called Wall-E, whenever we go to clinic she wants to watch the movie.  Even the nurses and child-life specialists know that if she is sedated, they need to have the portable DVD player in her room with Wall-E playing when she wakes up.  Now if you have never seen this movie you must go out and purchase it - it is truly awesome.  What I find interesting is that there is not one word spoken for the first half of the movie, and you would think that a 3 year old would be bored, but Aly seems to connect with the Wall-E character and can feel the emotions that he is going through.
Aly is still not used to having her Port accessed at clinic with the gripper ( needle that is inserted into the port) so the Child life team have dolls that each patient can have and they learn about the process through the doll.  At first I didn't think that Aly would buy into it but she loves it.  She has a doll at clinic and another that they have given her to play with at home because she is so anxious about the whole process we are trying to do our best to help her understand. ( below is a gripper).  Well when it came to naming her doll it was no surprise that she called it Eva.  If you haven't seen the movie Wall-E, Eva is the robot that comes down to earth that Wall-E falls in love with.  So now when Wall-E is lonely Aly says that Eva will make him happy ( and hopefully make her happy).

Here is a picture of Aly relaxing on her bed after receiving treatment.  If you look closely on her left chest you will see the gripper attached to her port.

...and here is Wall-E.  This was taken while she was admitted.  Aly took the photo and it was funny because she asked if I would stand next to Wall-E and get our picture taken.

I feel like a short order cook for an unhappy customer

So Aly is back on steroids after a week long break.  Unfortunately it seems the side effects ( moody, picky eating etc) did not go away during that week long break, and now that we are on them again ( I like how I say "we") ..... it is intense.  I am not really sure if it the steroids, the effects of the "red devil" drug, or that she is just a moody 3 year old that doesn't feel her best.  It's probably just a combination of it all.  Now her appetite hasn't really increased, but her perception of being hungry has.  That sounds weird, but she asks for such particular food but after I cook it, she won't eat it.  Tonight I picked her up from a visit with Granny and Popa.  She initially said that she didn't want any dinner, but then she wanted to try our chili - she didn't like it.  Then she wanted a pancake with chocolate chips and syrup - and she wanted to help me make it - - so we made it.  She then had some crazy meltdown about wanting lettuce and tomato with it - - because in the movie Ratatouille the chef makes a pancake with a "leaf" under it.  It sounded weird, but eventually we caved and did what she said - - she wanted a piece of romaine lettuce between two chocolate chip pancakes ( yuk).  She took about a couple of bites of it - then was done.  Then she wanted a cheese slice, then a yogurt.  She asked for another egg sandwich, but we had just made one about an hour earlier and she didn't it - so I told her she couldn't have another one.  Then she wanted a fried egg that she could dip her toast in - I made that but she didn't eat it.  I was beginning to lose my patience - - it's crazy that she is wasting all this food.  What is even crazier, is that I continue to make the food for her.  I mean really, at what age does a kid understand that food costs money and we can't just waste food !!
Throughout all of this struggle to have her eat something, I also had to figure out how I was going to get her to take her meds.  She had to take ondanzatron to ease her upset stomach ( from her chemo on Friday) and her dexamethasone ( steroid).  It turns out that ( for now) Honey seems to be the answer.  She loves honey, and since it is so sweet, it seems to mask the taste of the drugs.  So I mix them together and giver her a spoonful of honey and meds.
So all of this happened within a 2 hour period and I am exhausted - - it's probably the first time that I actually got angry - - and was trying to explain to her that I can't continue to make her food if she is not going to eat it.  I had to keep walking away from her and take a breath - - and then she acknowledged it and said that sshe just wanted me to not be angry with her.  Wow - that was like her kicking my while I was down.  So at this point I realized it was time for bed.  I am not sure if she needed to go to sleep, but I sure needed the quiet time.  So it's now 9:06 and she is wide awake. Brian is making her garlic bread and she just yelled from her room and asked if I could come and sing the Lion King songs to her...... so off I go.  I wonder what time she will fall asleep at.

...not quite herself

Well we are almost one week into this round of treatment and my poor little girl is just not herself. When she wakes in the morning she must feel nauseous because she almost gags at anything she can smell, and her tastebuds are also pretty sensitive.  We had to stop into Metro yesterday to pick up bread and as soon as she could smell all the food in the bakery and produce area - she almost gagged...poor thing.  She also seems to have the shakes in the morning but never a fever. I have probably taken her temperature 10 times in the last couple of days.
  Giving her meds continues to be a challenge, much more  than ever before. I feel like she not telling me she doesn't feel well so she can avoid taking any medicine. Its like when she gags, she immediately says " I am not sick mommy, I don't need my medicine".  I try to tell her that it's OK if she doesn't feel well, but its important that she tell me so can try to make her better.
Although she is on steroids her appetite has not increased to the extent it did last time, but she is being very specific with what she wants to eat - and we are back to the favourites ( fried egg sandwiches and rice).
Well right now are hanging out in her room while she watches Lion King and eats an egg sandwich.  We will soon be heading out on our morning walk - Aly seems to look forward to her walks every day - and it's nice to see her smile. Now if only she would willingly take her steroids, otherwise the next 10 minutes is not gonna be pretty.

.... 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!

Is this a dream??

I apologize for not updating the blog as regularly as I did before, but Aly is doing so well I am soaking it all up.  Writing this blog is a bit of therapy for me and updating it seems to remind me of all the hard times we went through this summer.  I realized that by not updating the blog, I was really just being selfish.  I know that she is doing great and acting like a healthy (nearly) 3 year old, but all of you that read this, don't know that. People assume that no news is good news, but I guess I should write about the good news too.

Well here goes .... Aly is fantastic.  She runs around and plays like any other child her age.  Her visits to clinic are getting easier, last week she even sat in the big green chair all on her own to get her gripper taken out (gripper is the needle that goes into her port and allows nurses to obtain blood and give her chemo) ..... she cried a little, but was SO BRAVE....I was so proud of her.  She is nearing the end of this round of treatment and people give me a strange look when I tell them I don`t know what is next for her treatment ...... it`s gonna be a tough round for her, so I am not ready to face that reality.  A couple of weeks ago I spoke with some other parents at the clinic whose kids are now in maintenance and they were talking about what to expect in Aly`s next round of treatment and gave me some tips on how they handled it.  But for now I am enjoying her laughs, her playfulness and even her saucy behaviour.  I swear that she is wise beyond her years - the things that come out of her mouth are unreal.  The other day we were on our way to a playdate with Denise and one of the kids from daycare, and while we were listening to the radio she heard the word `Watertown`.... she said, ``oh we can`t can`t go there Mommy ....`` ...after asking her why, she said because Mommy, we would get wet .... and we shouldn't get wet in our clothes``.  It was so funny.

So we are being careful and ensuring no-one is sick, but I am trying to get Aly out and playing with other kids in the park, or having some light playdates.  It might be a long winter in-doors and I think it`s important that she soak up all the fresh air and fun that fall has to offer.  This past week she was able to have playdate with one of the boys she went to daycare with.  Liam is such a sweet, loving little boy and they played so well together at the park.  They shared, they laughed and they played well together - it was go great to see.  Aly was also excited to see her favourite cousin Connor this weekend and little Grace.  We went to see his hockey game, then we went to Grannies and played for a few hours in the backyard, on the swing, in her playhouse and on the deck with her toys - - she had a blast!! 

No treatment this week, just antiobiotics to aid in preventing any infections that she might be exposed to.  Wed head back to the clinic on Oct 4th.

"RAISING HOPE FOR ALY" FUNDRAISER UPDATE from Denise.......

I'm sure that everyone is anxious to know how much we raised at the "Raising Hope for Aly" fundraiser on September 17th. I am proud to announce that we raised $7,900.00. I would like to take this opportunity to thank everyone for all of their support and generous donations. The evening was a huge success! I would further like to thank everyone that has mailed me or has dropped off a donation for Aly and her family. With all of these donations pooled together we have raised over $10,0000. We should all be so proud for making a difference in the life of our LITTLE MISS ALY. Thank You!

Fundraiser Update - - a note from Denise!

Hi Everyone,

Now that we're into September, the "Raising Hope for Aly" fundraiser is not far off. Just a reminder that if your reservation has changed in anyway to please contact me at deener.25@hotmail.com
Names will be checked off at the door, and payment will be received at the door for the evening. Our silent auction items are amazing, and there is a fantastic variety of something for everyone. Just a reminder that cheques or cash are the method of payment for the auction. Seating at the restaurant is indoors and out, so please dress according to the temperatures (patio will be covered with a tent)

Looking forward to a fantastic evening. See you on the 17th!

Denise Leonard

Treatment Update

So Aly just completed her Consolidation phase of treatment with her last chemo pill tonight.  She has been taking a pill called mercaptopurine (orally) for the past 28 days and has been such a trooper.  In order to ensure she takes the pill with no issues, we have been disolving it in water and giving it to her with an oral syringe.  We call it her "important" medicine and each night we have to pretend to give it to her Yoda doll and her Darth Vadar "build-a-bear".  Those poor stuffed animals have to get chemo.

Tomorrow we are back at the cancer clinic at 9am for the first treatment in the next phase of her treatment.   This next phase is referred to as "Interim Maintenance I" and lasts for 8 weeks and consists of two types of IV chemo treatment ( Vincristine and Methotrexate) that she receives every 10 days in addition to one more spinal treatment on day 31.  I hope this is a long 8 weeks, because the next phase also runs for 8 weeks, but has 2 separate weeks of the dreaded dexamethasone ( steroid).  I dread this, but at least this time it's only for 5 day cycles .... and apparently just as the side-effects kick in, they are beginning to decline and nothing like they were when taken for 28 days .... not sure I could survive that again.

September is Childhood Cancer Awareness Month !

I am Aly Davis ...

My name is Aly, and I have a strong and mighty heart,

There isn't one thing in the world that I can't out-trick or out-smart,

Though in size I'm still just little, with my courage I'm ten-feet tall,

With enough time to catch my breath, before you know it, I'll show you all, 

How far will be the rocks I throw,
How many will be the things I know,
How far will be the places I go,
And one day, I'll say I told you so

I am Aly Davis, and I knew it all along,

I am as brave as a lion and I am resilient, I am strong.

 

A poem written by Brian's cousin Alisha........(thanks Alisha xoxo)

Play Date

Well it was a special day today .... Aly and I went to her daycare this morning so she could play outside with all of her friends.  When we first pulled into the driveway, she was excited and wanted to see Denise but when we drove up the drive way she saw all the kids run towards the gate and I think she got nervous.  It has been about 2 months since Aly has been to daycare or really had any form of socializing with kids her age so I guess I understand why she might have been anxious.  We got out of the truck and I carried her into the backyard, and our dog Lola followed close behind.  At first she had a firm hold of me, but all of the kids were great and gave her the space she needed.  It didn't take long before she was playing with the toys in the yard and asking to go on the swing.  She interacted with each of the kids, played with all her favourite toys and ran around screaming with joy like any other child her age.    We stayed for a while and Denise and I had a great chat while her daughter played with Aly and watched her to make sure she was OK.  It was getting close to lunch when we decided to leave, as I could see that Aly was getting tired.  She said goodbye to all of her friends and gave Denise and her daughter hugs and thanked them for the visit........I think we were all happy to see Aly playing with her friends and in such great spirits.......thanks Denise and kids xoxo

... She's baaack!

Well it has taken some time, but the steroids are gone from Aly's system and she is back to normal ..... even better than normal.  I have noticed a difference in Al'y speaking, comprehension and dexterity since she was first diagnosed.  It has nothing to do with the treatment, but I see her growing and developing like a healthy little girl.  She can use her hands better than ever... and I was so pleased to see her pull the lid off of a magic marker today ....... what I didn't like seeing were the marks it left on our LCD TV.  It appears Ms. Aly found some alone time to add her signature art work to the TV.  Good news is it isn't really noticeable, unless you look at the TV at just the right angle.
  We had a clinic visit today and Aly underwent her final LP ( spinal tap ) for this round of treatment.  We arrived at the clinic just before 8:30 am and since it's been some time since Aly was there ( due to her hospital admission) she was a bit upset and "feisty" when the nurse tried to access her port.  It is never a fun procedure.  As lovely as the nurses are, poor Aly has to sit on my lap as I hold back her arm and the nurse cleans off her chest and prepares to access her port.  I had put a freezing patch over the area this morning at about 7:45, so it was nice and frozen by the time the nurse inserted the needle into her chest.  They promise me that she cannot feel it, and that getting blood and flushing her port does not hurt, but I am not sure I buy it 100%.  She screams and screams every time but I try to tell myself those tears are more about anxiety than pain.  Blood work is done and before long we are in a treatment room surrounded by Doctors, residents and a nurse.  I was impressed that with a room full of about 8 people not including my mom, Aly and I - Aly didn't seem phased at all.  I lift her onto the bed and try to distract her as the resident accesses her port and begins to administer the sedative.  The first med that she is given is to relax her - - and it works.  She rolls back into my arms and begins to talk about what is happening in the room.  She mentions that it is too loud and asks everyone to be quiet, then as the resident pushesg the syringe of sedative into her IV, we tell Aly that we are giving Wall-E ( her port) a drink of milk ( it's white liquid).  In seconds I now have my daughter laying next to me stoned out of her mind .... and finally drifts off to sleep.  I think it is important to mention that only a few years ago they did this procedure with no sedation. I cannot imagine holding a 2 year old, (as feisty as Aly) tightly in the fetal position while a doctor inserts a needle full of chemo into her lower spine.....no thanks!    The entire procedure only takes about 10 minutes, however today they needed to top of the drugs a bit as she did not fall into a deep enough sleep initially.  She had a good sleep after it was all over, and when she finally woke up she remained in the room and watched her favourite movie, Wall- E on a portable DVD player.  Once she had rested for an adequate amount of time, we were able to leave.  We then drove home, picked up Papa and took him out to lunch for his birthday ...... Aly picked the location, so McDonald's it was.

September 17th - Fundraiser **SOLD OUT**

Home Sweet Home

....well if you asked me a week ago how I felt about leaving the hospital with Aly, my stomach would have turned.  I was dreading the life we had lived for the past 5 weeks while Aly was on steroids, depressed and wouldn't leave her room.  I feared she would get a fever and we would have to rush her back down to emerg at KGH like we did on July 22rd.  But since the fevers have stopped and each day the steroids appeared to be leaving her system, I was thrilled when one of the nurses finally asked Aly's doctor when we would be discharged.  I was afraid to ask the question.  I was afraid that they would tell me "tomorrow" as much as I feared hearing we would be in for another 3 weeks.  The timing was perfect, I was ready to leave, and after watching an old video of herself playing with Lola (our yellow lab), Aly wanted to go home too.
  On the morning on Friday August 12th I hoped that Aly would sleep in.  Before being discharged she had to be sedated and undergo one more lumbar puncture  ( spinal tap).  The nurses came in early that morning, around 6am to obtain some blood samples from Aly.  This process had become somewhat routine for her, and could normally sleep through the process, but not this morning.  She woke briefly, as she doesn't like to be woken the the site of nurses messing with her port and attempting to obtain blood.  She wined a bit, told them to stop and go away, but as quickly as they entered the room, they were gone.  Luckily she fell back asleep, as did I, only to wake again at 8am to a nurse administering Aly's final dose of antibiotics ( for her apparent blood infection).  She fell back asleep again so I took that opportunity to get myself a coffee.  The LP was planned to begin at 10am, so a nurse quietly came into her room and put some freezing cream on her lower back so that she would not feel the pain of the needle in her lower back.  Aly finally awoke that morning in a fairly pleasant mood, and when the team was ready I carried her to the treatment room where they started to sedate her.
  As difficult as it is to watch your child be sedated, I have such confidence in the the Doctor's and Nurses at KGH that I didn't spend one second worrying about what she was going through - - and as usual, I looked to my sense of humour to distract me from the situation.  There was my 2 1/2 year old laying on a bed, stoned out of her mind.  Her eyes were almost shut as she looked around the room saying " I just want to relax now" .... then asking the resident, with an intoxicated slur " what are you doing with that..." then just as she fell asleep, in a very excited voice, said, " I think I want some pizza....."  I gently kissed her on the forehead, told her I loved her then left the room.  She returned to her hospital room in the arms of the most caring and loving nurse we could ask for .... and Aly was awake but groggy.  The resident that had performed the procedure ( I think) handed her 3 little toys and hung around for a while to continue to chat with Aly.  For those of you reading this that might not know Aly too well, or haven't had the opportunity to have a conversation with her, she has quite the vocabulary and seems to continue to amaze the doctors and nurses that see her.  Not only does she speak well, her ability to comprehend and the sentences that come out of her mouth are fascinating .... its like she is an old sole, and is wise beyond her years.
  After resting for a bit, we happily packed our bags and were picked up by Granny before noon.

....going home on Friday!

....not sure if I wanna say "yay" or "holy crap".  It's time to return to the real world.  This past 7 weeks has been such a world wind .....Aly getting sick - being diagnosed with leukemia - her first admission - clinic visits - STEROIDS - Food, Food and more Food!! - - a visit to Emerg after hours - - then this admission which will end up lasting 16 days.  Does this mean that she will be back into her old routine?  My fingers will be crossed that she does not get any fevers so we can avoid late night trips to the ER.

Each day has been getting better.....Aly now asks to go outside and she is now a HUGE fan of the downtown market .....maybe this will convince Brian that we need to move downtown and NOT to the country. 

We had a very special visitor this morning who gave Aly a Magic wand - - tonight she held the wand up in the air - hit her belly with it and "mommy my bug is now gone - I am not sick anymore".  It floored me, I didn't know whether I was going to laugh because it was so cute, or cry because she knows she is sick.  This special visitor was a mom that has been through this before, pretty much a stranger to me, but for some reason chatting with her in the room made me feel connected in some way.  It is inspiring to hear stories of kids that have been through this and here how strong they have been and see how these parents are survivors themselves ( ...trust me if you have ever had to live with a kid on steroids you have the right to call yourself a survivor).  When Aly was first diagnosed everyone kept saying "kids are so resilient" and it is so true ... they adapt to situations that others would kick and scream over ( ok - Aly does her share of kicking and screaming).

....well fingers crossed that tomorrow is a nice day as Aly wants to go back down to the market to buy more fruit.  If she doesn't sleep in tomorrow ( today she woke up at 10:15am) maybe we will have breakfast downtown too. 

....still at KGH

Well we are on day 11 of a 14 day dose of antibiotics for the blood infection Aly had, and so far all of her blood work has come back clean.  They had one final sample taken last night, so hopefully we get those results tomorrow.  Although I am curious about when we get to go home, I have yet to ask the question....as I mentioned before the idea of being away from here is a little frightening.  The only reason I say that now is, with this next protocol of treatment Aly is getting, it will really impact her white blood cells and they will begin to decrease therefore making her neutropenic ( no immune system).  So .... every time she has a fever over 38 degrees .....of to Emerg we go :) It's just such drama for her to go through  ( ...and us).
   Aly has been running a slight fever each night for the past week, and I think I figured out why today.  She has finally cut her 2 year molars. Although every parent out there would agree that teething causes redness in cheeks and fevers - most Doctors would disagree ( as I have found out ).  Oh well -- I think that is what has caused the fevers - so that is what I will stick with.

We have finally gotten Al outside for some fresh air.  Yesterday we headed out just before lunch ... we walked through the park and headed for the market where we picked up some fresh raspberries, blueberries and peaches - - yummy!  We headed down to the waterfront to see the big boats, then spent some time feeding the ducks before we had lunch and headed back to the hospital.  Aly hasn't walked too much over the past month, so her legs are pretty shaky and she doesn't move as quickly as she once did.  This morning her legs were sore, but she still managed to do a couple rounds of the pediatric floor before asking to go outside.  So we got dressed, grabbed the stroller and headed back downtown.  Daddy met us in the park and we hit the Antique market, swung by Pan Chancho for some muffins, coffee and special sugar cookies for Aly ..... then back to the waterfront to relax for a bit.  We then had brunch and headed back to the hospital.  When we passed through the park we saw all the little kids playing in the splash pad - - it was sad because Aly just looked at all the kids playing and laughing.  She asked to get out of her stroller, but when we got her out, she couldn't really walk - - it seems to be her right leg that is bothering her the most,  When she takes a step it points to the left a bit and it almost looks like it is asleep or heavy.  Daddy carried her from the park all the way back to KGH - - it was pretty muggy out so Brian sweat the whole way - Aly thought it was pretty funny.

Uncle Stew and Auntie Reb stopped by today with a one of a kind Tshirt for Aly ..... although she was very grumpy and not up for visitors when they were here, she is loving her new Tshirt...... she has actually fallen asleep with it on tonight - - she refused to take it off. It is officially her first concert T-shirt ..... the first of many I hope.

What is next?

Well let me start by saying that today was a good day.  It started out challenging as Aly was unable to eat this morning as she was being sedated so they could perform an MRI and another ultrasound.  The ultrasound that was performed the other day was not really clear, and although it showed a blood clot it was not clear how bad it was.  Under sedation Aly wasb totally still and they were able to get the best shots possible.  The whole process took about 3 hours to complete the MRI ( it was delayed as she had a full bladder, and they needed to wait for her to pee) and the ultrasound.  I took the opportunity to eat some lunch, go for a another nice stroll along the waterfront, and just relax a little on my own.  We have only received the results from the second ultrasound and we were relieved to hear that there was no blood clot.  Now its hard to say if perhaps there never was one, or if the few doses of blood thinner helped alleviate the problem  - but regardless I am thrilled.  Having a blood clot as an oncology patient can be very challenging as there are many times where she would have to undergo procedures like the spinal tap and they would need to be very cautious of her bleeding too much etc..... I feel slightly more relieved about it all now, than I did yesterday when we heard she was in remission.

  We initially thought Aly was considered as Low Risk ALL and was able to participate in a new study where she could potentially receive safer drugs with lower risk of long term side effects.  Unfortunately the Dr pulled us aside today and told us that some other blood work had impacted those results and she is now considered Average Risk ALL.  All this means is that she will undergo standard treatment and does not qualify for the new tests.  The survival rates for this is still 95%, and the treatments seem to be pretty standard.  Once we meet with the Dr tomorrow, I will have a better idea of what the next steps are.

 Each day I see more and more of my little Aly coming back.......today was no exception.  She laughed alot, played around with nurses and visitors and we have started a reward/sticker program for her that seems to be working.  Every time she is nice to the nurses when they do her vitals she gets a sticker - -after she gets 4 stickers, she gets a little surprise.  I just think it's funny that I have to create a reward program for her to be nice - - perhaps someone should have done that to me years ago, might have saved some people some grief.  I still have no idea when we will be discharged, I think now it all depends on the results of the MRI.  If it shows that she has a bone infection, then we are here for another 6 weeks.  It might sound like horrible news, but I get a weird sense of comfort here.  If she gets a fever, we can do blood cultures immediately.  Her vitals are taken on a regular basis ..... all these things make me comforted knowing that she is in good hands.  If being admitted to KGH is what is best for Aly - then it is what is best for me.  I cannot say enough about the nurses here ..... some have their moments, but then there are some that just SHINE SHINE SHINE.  They blow me away, how much they care about Aly.  One in particular tells me how she thinks about Aly all the time.  When she is not working, she worries about who is looking after her and if they are doing what they should be doing.  Aly wasn't even her patient today, yet she was the one that took 3 hours out of her day to stay next to my little girls bed to make sure she was ok through the MRI and ultrasound.  She even told me that she looks forward to coming into work so she can have Aly kick her out of her room - - ha!
This whole experience has put life into perspective for me.  I no longer care about wanting a fancy car, living in a big house or wearing $150 tops.   Life is too short and too important to spend trying to please others who really don't give a shit about you anyway.  Those that are important are the ones that are there for you in the hard times even more so than the good times.  I think that being surrounded by the great family and friends is what has helped us get through this and that is totally priceless.

Good news today .....Aly is in REMISSION

Well I wasn't expecting it today, but we got the great news that Aly is in remission!  The induction treatment ( and those damn steroids) worked and all the cancer is gone!    When the Dr came into her room today, I had no idea what she was about to tell us.  My mom and a close family friend were in the room when the Dr said that she had good  news to share....... the test results showed that Aly was in full remission and now considered LR - ALL .....that is Low Risk Acute Lymphoblastic Leukemia. 

Although I was overjoyed with the news, I knew it was not the end.  Some will think that Aly will now get up out of bed and walk out of the hospital like a healthy little girl. but I know that is not the case.  We still have a long road ahead of us, and we will talk further with the Dr's tomorrow to see what that road looks like.
....but in the meantime I will enjoy the moment and be thankful with the great news that has come our way .....it's about bloody time.

...from one arm to another

Well I was very happy to see her dip into her Happy Meal box last night for dinner - - not because she was reaching for a burger, but because she was doing it all with her right hand - the hand she hadn't moved in a week.  I was relieved that the infection was beginning to clear and she was getting movement back.   The use of her right hand continues, and although slow at times, she is still able to move her fingers and raise her arm straight up in the air.  Tonight however, I noticed that he left arm was being favoured a bit and she was no longer moving it at the pace she once had.  The only way to describe the movement, is that is looked like her arm was heavy because she was moving it so slow.  I informed the nurse and the resident came into examine her.  She did complain that her arms hurt, but I really don't want to give her too much pain medication if she is able to tolerate it a bit.  That might sound mean, but the only medication she can really take right now is codeine, and I am just not a fan of giving my little girl a narcotic.  She doesn't seem to be in too much pain now, because as I glance across the room she is fast asleep on her hospital bed.  She had some visitors today and didn't really have an afternoon nap, so she is pretty sleepy.
  One of the nurses reminded us of the importance of Aly sitting up when she eats, so every time she eats now she says " mommy I have to sit up to eat remember". We also need to get her up and moving.  If you think about it, she has been lying down for a little over a week now so we need to get those little legs moving again - Doctor's orders.  She really wants nothing to do with getting up and moving, but this afternoon we got her dressed and went for a walk down to the playroom.  She cried as we got her dressed and out of bed, but we made her walk from her bed to the door.  From that point Brian picked her up and carried her to the play room.  Once we were in the play room she really had no interest in playing, but I did pull out some things to remind her of all the great toys they had.  She wanted to return to her room, so we asked that she walk to the playroom door then daddy would carry her back. She agreed, but as we got close to the nurses station, Brian put her down and asked that she walk to her room ( which was only have 6 adult steps).  Her legs were shaky. Although her legs remain the size they have always been, they now have to bear the extra 10lbs of weight that she has gained over the past month.  This was definite baby steps, but it was nice to see her up and moving.  We will continue this routine until she is able to walk to the playroom all by herself.  If the weather is good on Tuesday, we might venture out to the park, or down to the water to skip some stones.

.....not much to report.

Well today was the big day - she had her post induction bone marrow and lumber puncture in addition to her first round of chemo into her spinal fluids.  Unfortunately we don't have anything to report in terms of results.  We have allowed Aly to participate in studies that occur in the US ( which has a much larger study base than Canada) so her marrow etc has to be sent to the US.  We might have some preliminary results sooner, but we will have to be patient.  Her Dr has been out of the country for the last week, so it will be interesting to chat with her this week and see what she things about all the issues Aly has been experiencing ( no movement in her arm, bad bad diaper rash, blood infectio etc...)
 In general I think Aly had a better day today.  After her procedures she spent most of the afternoon napping, but when she was awake Granny noticed little bit of our Aly coming back.  Her appetite has decreased a bit but I am not sure if that has to do with being in the hospital, being off the steroids or a side effect of the chemo she received today.  Her arm is still bothering her, but I was pleased tonight to see that she was able to lift it straight into the air and even move her fingers slightly.  The Dr said that her blood is no longer growing bacteria, so hopefully they are somewhat related and she is on the mend.

 I think I must partially be in denial that Aly has cancer.  I walk around the pediatric floor and find myself  saying - - Aww look at that poor little kid / baby - I think it has cancer - - poor thing.  It takes a minute before it registers that my little baby has cancer too.  I think I just have such strong feelings that she is going to beat this, and I am so caught up in living in the moment, that perhaps I haven't given myself the time to step back and think of what is really happening........we can put that piece on hold for now and I shall continue to do what I am doing - because I think it is working for me. 

I cannot say enought about the nurses that work on the pediatric floor - - they are fantastic!  For that of you that think of Aly often and worry about her, hopefully it helps you to know that she is in good hands.

... another day in KGH

Not much progress today.  Aly is still favoring her right arm and barely moves it - - and it is keeping all the Doctors and nurses on their toes.  Aly had some random fevers today, but in general seemed ok.  Her belly is so distended from the steroids ( and food) that her breathing continues to be shallow and she sweats like someone who just ran a marathon.  I have been worried about her blood sugar levels since the steroids can negatively impact her pancreas and many people can develop diabetes post chemo -  not to mention the fact that he daddy is a diabetic as well .....but I was pleased to hear that her blood sugar was 7.0 - - right on track! - phew.
  I have noticed that she does not eat as much when we are in the hospital, but her appetite is definitely there.  We realized last night that the only L'il Cesar's in town was located in the west end, so Brian drove out and got her a cheese pizza to get her through the night.  Surprisingly, she slept from 10-5 without waking for food - just a couple of requests for milk.
Looking at her now, she is lying in bed watching a movie ( surprise!) and her skin is so stretched and has a shine to it.  Some of the nurses remember her form her first admission, and a few of them did not even recognize her.  The only way to describe the way she looks, is uncomfortable.  It reminds me of being 9 months pregnant, not wanting to walk, feeling puffy and bloated and having a hard time breathing because of the size of my belly.  I really debated putting a picture of Aly on here in the state that she is in - -but I think it is important for people to see the impact that these steroids can have on a child. Some of the people that have come to visit Aly have been really impacted and upset by the way she looks, and I think it's because it's almost unbelievable that in such a short period of time ( a month) a child who used to be so skinny and weigh 30lbs - - can now tip the scale at 40lbs.
Tomorrow is the big day - - and one that I am not sure how to prepare myself for.  All I can focus on right now is the current state and knowing that she is comfortable, fed and clean.  Tomorrow the whole process will begin at 10am where they were take her to be sedated.  The first procedures that will take place are the most important ones ... the bone marrow test and the lumber puncture ( spinal tap).  These tests will help them to determine how the first round of treatment went .... and ideally all of the leukemia will be gone.  Apparently it is quite simple to kill the leukemia cells - - the chemo that she has been receiving has been quite mild, it is the steroids that have the most intense impact on the body.  As her treatment continues the chemo will become stronger, but steroid use will be come minimal and only for short periods of time.  In addition to those tests they will also do an MRI on her arm to try to determine why she is not using her right arm.  There could be a blood clot, or there may be other issues that require her port to be take out fully and a new one inserted - - but that would not likely happen until next week.  While Aly is sedated they will also take advantage of the fact that she can not kick, scream, spit and bite them ( yes she does all of that from time to time) .....and they will give her a bath and wash her hair.  Hopefully that will help make her feel a wee bit better too!

.....over the past few days I have had so many people tell me how much they see me in Aly.  Now to be honest I am not sure how to take that.  Prior to being sick, everyone that the fair, slender, tall sweet child looked just like her daddy.  Now that she is puffy, opinionated, cranky, bitter and demanding - all of a sudden she is her mother's daughter.  But you know what I am ok with that because if she has her mommy in her this poor little illness called leukemia doesn't stand a chance.

.....it's always something

Well I have been looking forward to this day for 5 weeks ..... it is the day I give her the final does of dex ( the steroid).  BUT .... just when I had something positive to look forward to - the Doctor called.  Turns out that Aly has an infection on her port incision AND her blood.  Sooo........ off to the cancer clinic we went all prepared to be admitted.  They did the routine bloodwork and gave her some antibiotics for her infection.  Since the bacteria in the wound and the blood were they same, and she didnt have a fever, doctors are pretty sure that its a contamination infection, which means that the wound was infected, and each time the port was accessed it was pushed into her blood.  And to top it all off she is still having issues with her right arm.  She seems to be favouring it and really hasn't moved her right hand in a couple of days.  The xrays were clear, so the next step is an ultrasound, then a potential bone scan to ensure that the infection is not impacting her to that extent. 
  As a result of all of this, her bone marrow test and spinal tap scheduled for Thursday will likely be pushed out to Friday.  Whent he doctor told me that I looked him straight in the eye and said - - this doesn't mean she needs to continue to take her steriods does it????  He resonded with a firm "no".  Phew ... not sure I would have taken that news well.  As long as those are done, and she is in the hospital I know that she will get the care that she needs.
Once we got up to her room the nurse took her temperature and it was 38.1 - - so she had a fever.  They gave her some tylenol and seemed to do the trick.  As usual, she ate and ate and ate tonight - -first a slice of pizza, then a cheesburger from McD's, then more pizza, some chicken and veggies and half a banana - - - and about 3 sippy cups of milk.  Now, finally, at 9:20 she is fast asleep.....hopefully she is out for a bit and gets some well deserved rest.
......not too sure what is on the schedule for tomorrow, but I will keep updating.

....fever time

Well it finally happened, the day I have dreaded - Aly had a temperature of 38.4 last night and I had to page her oncologist.  They told us on the day that she was diagnosed, that 38 is the magic number and even issued us a hospital approved thermometer.  We were informed that as soon she reaches a temperature of 38 or higher, we need to have the oncologist paged, regardless of day or time.  Leave it to Aly to run a fever at 6:30pm on a Friday night - - when everyone has gone home for weekend - so I paged the Oncologist.  I was impressed at how quickly I was connected to him - and after some brief discussion we headed in truck to KGH ( there was a bit more drama during this time - but I will leave that part out - - thanks for being here Erin!)
So when we walked in emerg I was told to inform the triage nurse that we were "direct to peads" - this way the on-call pediatrician would see Aly and not the regular ER doctors.  We were isolated for a very short period of time until they had a bed ready for her.  Once she settled a couple of nurses came down to access her port and take some blood samples - - again, a whole lot of drama that I will leave out, the important parts is that they got the blood they needed.  The two nurses that came down already knew Aly from her last admission to KGH and I am not sure about Aly, but I was definitely happy to see some familiar faces.  They were already aware of how "pleasant" Aly can be ( not) so I didn't have to explain the impact that steroids were having on her.  It wasn't until 10pm that we had some xrays done to ensure that she did not have any pneumonia in her lungs, as the Dr's were concerned about her breathing.  Everything else seemed normal for Aly, however the main concerns were her rapid short breaths, increased heart rate and excessive sweating.  Apparently those can be completely normal for a child on dexamethazone ( and that has gained 10lbs in 4 weeks), or it can be signs of pain and infection.  With clear x-rays they were able to send us home.  I feel bad for all the patients that were in the ward with Aly as she has quite the lungs and kept yelling - I wanna go home, I wanna go home, HOME, HOME -  home NOW!!! ( all night long)  It's a good thing she is cute because when they all saw her leave, they just tilted their heads to the side and gave her a smile.

It was an exhausting night but I definitely learned a few lessons. 
I need to know her blood levels from her most recent visits  - everyone kept asking me what her white blood count was etc.  At least I knew that she was not neutropenic and her levels were good - - I just didn't know the number.  I also have to keep track of her bowel movements and pay closer attention.  It's amazing how important your pee/poop frequency can determine your overall health.

Well its 10:28am on Saturday morning and she is still asleep.  When we finally got home last night she was wide awake so she stayed up a bit with daddy and watched TV in the living room before hitting the hay at almost 2am.  I bet she is as exhausted as we are.......  And so begins the longest week ever -- so much happening this week.  Not only does she have her bone marrow and spinal tap on Thursday, it can't happen until 12 noon and she cannot have any food / drink before the procedure as they have to sedate her.  WOW - they have no idea how ridiculously hard that will be.  Aly eats non-stop from the moment that she wakes up and when I tell her she can't have anything - she will lose her mind.  Perhaps I will keep her up on Wednesday until 2am again, so she will sleep in 11am - then I only have to distract her for an hour :)  Fingers crossed......

...heading into Week 5

Although this is only week 4, I can't help but think ahead to next week.  Instead of just getting chemo next Thursday, it's the BIG DAY.  Aly will undergo another bone marrow test and spinal tap.  She will be sedated for both procedures ( thank goodness) ....... and then we wait to see what her results are.  At this phase she will have completed her 5 week induction period and the hope is that the results of her test will show that the cancer is gone and she will be in remission.  I have no idea how to feel, I have to remain hopeful, however I also have to be prepared if it's not the news we want to hear.  I guess that is why the saying " Plan for the worst, and hope for the best".  I will continue to remain positive, but the time we have to wait will be the most emotional ( and longest ) wait yet.  Based on the results from that test the Dr's will determine the next phase of her treatment ....... and she will have to continue to receive chemo for 2.5 - 3 years - - mainly as a preventative measure.

Aly had her bloodwork done yesterday and her results were strong, her platelettes are back up to what they would be for a "healthy" child.  I was nervous that she was going need a transfusion, only because she was so lathargic, but everything was good.  After the clinic visit yesterday she was in better spirits and I want to thank Erin and Gracie for bringing her over some movies last night - - she has watched them both twice now!

......fingers crossed that all goes well tomorrow when she receives this weeks dose of chemo .... then we will move ahead into Week 5 - - I feel like I might need a lot of wine next week!  Thank you to everyone who reads the blog, I hope it helps you as much as it seems to be helping me!

..... Please let me trade places.

So today was probably one of the most challenging days yet.  I can see Aly becoming more and more uncomfortable and happy every day.  It's like she doesn't really know what she wants or where she wants to be.  On Sunday she wanted to go to Grannies - - so we headed over to Grannies and after an hour or so, she just wanted to go home ..... so home we went.  We got settled in her room and started to watch a movie and she started saying " Granny's" "Granny'".....so off we went to Granny's for dinner.  It was so hot out that night and she said she wanted to sleep in her room at Granny's so I figured we were there for night.  Well that soon changed just after dinner where she said she just wanted to go to her house and sleep in her own bed.....yup, you guessed it - we went home.
 Today I just couldn't make her happy.  The chemo has made her potty training a done deal and she is back into wearing diapers and as a result has developed the most painful looking diaper rash I have ever seen ( sorry for the details) - so she can barely walk, doesn't want to be picked up and doesn't want anyone to touch her.  I figured of all days, we needed to have a bath.  She wanted nothing to do with the bath but it was necessary - - so she kicked and screamed the whole time but we got her all cleaned up and freshened up for the day. ( I should add that I had to bribe her with a Happy Meal and the star wars toy that comes with it - she got a C-3P0 figure that dispenses stickers)

  I just want to trade places with her until all of this phase is over.
A 2 year old should be out playing with their friends and not sitting in their room watching movies all day.
A 2 year old shouldn't have the emotions of a 15 year old; she should only cry when she doesn't get her way.
A 2 year old should not be depressed she should be outside chasing butterflies.
A 2 year old should not have to go through the pain and discomfort that she is experiencing right now.
A 2 year old should not be worried about her next trip to the Doctor, she should only be concerned about what colour play-doh she wants to use - or what her favourite colour is.
A 2 year old should not have to be exposed to such harsh drugs and chemicals.

I wish that the movie Freaky Friday was real and that I could trade places with my daughter......even if just for one day to give her some relief.  I recently read a quote that another mom whose daughter has leukemia wrote and I really related to it .... she said ..... "Tears are not a sign of weakness but a sign of being so strong for so long"   I can drink to that one.

We go back to the cancer clinic tomorrow for bloodwork and more chemo on Thurday!  I have a feeling that her blood levels will be low and she might be in need of another transfusion.  I was not a blood donor before, but I will be donating blood next week and I would enourage everyone who reads this to consider it.  It could save someones life.

.....how did this all happen?

Lots of people have asked me "how did this all happen ( with Aly)" ..... so here goes.
Some of you know that I was in the hospital just over a month ago getting my gall bladder out, and during this time Aly had been running a low fever, but after taking Tylenol it seemed to break. Aly was at home with daddy and each morning she felt warm, so we kept her home from daycare and she spent her days with Granny.  Aly seemed tired and a little "blue" - but we figured it might have to do with mommy being in the hospital for a week and seeing me in there might have upset her.  A week passed and she was still having fevers when she woke in the am, then again when she got up from her nap.  It wasn't until she was throwing up in the am that I figured I would take her to the Doctor.  After a usual check up, the Dr wanted a urine and blood test to get to the bottom of this.  I wasn't too excited to take Aly for bloodwork, so I was hoping to start with a urine test - - but Aly was not cooperating.  The final straw was on Friday June 24th, I woke up to Aly saying  "mommy - I am awake now" ....  but when I entered her room I was not prepared for what I saw.  It was like someone had hit her in the mouth ...... it was covered in dry blood - all in her teeth and on her face around her mouth.  I then noticed 3 separate blotches of blood on her mattress.  I made the BIG mistake of calling Telehealth ( which I will NEVER call again)  They told me that children throwing up blood was quite common and that I should just attempt to give her water to keep her hydrated.  So I hung up the phone and called my friend who is a nurse (NP).  She sugguested that I take Aly down to COPC or the urgent care centre at Hotel Dieu and have them do blood work- - so that is what I did.  Because she is so fair ( or pale really) they took her in almost immediately and I pretty much demanded they do blood work.  They also did a number of other tests including chest xrays.  It wasn't until the blood results came back that I began to worry - because the next time the nurses came into the room they all had masks on and yellow aprons.  I immediately asked what was wrong -  and they said this was just a precaution for Aly's safety.  I later found out that her white blood cells were so low, she was neutropenic, which meant she really had no immune system to protect against any viruses etc.  We were later told that she was being admitted to the pediatric floor at KGH ....... and later that night had her first blood transfusion ( and slept through most of it).
  We were told on the first day that Doctors were considering 3 possible things ...... a virus, leukemia or another form of cancer.  Until we knew for sure we would just stick the "virus" story when any family members asked.  We were later released from the hosptial the following day but had to return to the cancer centre ( yet another detail we did not tell family) the following Tuesday for a bone marrow test.  Initial results from that test came back alright as they allowed us to go home until they received all of the results of the test.
Later that afternoon I was out grocery shopping and got the call from Doctor telling me it was in fact Leukemia ( I will leave out all the dramatic details that took place next)....... and so began our journey.  We returned the next day so Aly could undergo a lumber puncture ( spinal tap) to test to see if the Leukemia had entered the brain yet ( it had not).
  Ya know - - the funny (not really) thing is all the precautions I took when Aly was so little ( and even when I was pregnant).  She ate all home made organic( mostly) food, she wore cloth diapers for the fist 8 months, I nursed her for 9 months, and she was only bathed in (expensive) non-toxic bubble baths and soap - - and we had a chemical free house. Hmmmm ..... and for what?  It wasn't until last week that one of the nurses told me that all of that is what might help Aly fight this even more, or put her in a much better position to fight the cancer.  With her increased appetite, she is only craving healthy foods ( well with the exception of the fried egg sandwich) and that is a little different than many kids with cravings ... they normally want chips, cookies and other carbs.
   Hope that helps - - if anyone has any questions, please do not hesitate to contact me.

PS - a BIG thanks to all of the awesome nurses at Hotel Dieu and KGH - I am not sure this profession is appreciated enough or hears THANK YOU enough.  So if you are reading this and you are a nurse - thank you thank you thank you!