...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!

Bonding over a fried egg sandwich ...

....it seems that Aly is her happiest first thing in the morning.  She normally wakes me up by yelling for me, or more recently, getting out of bed and tapping me on the shoulder whispering "mommy, I want an egg sandwich."  Sometimes is 8am, but other times it might be 5am or earlier, but regardless of the time we both get up and head to the kitchen.  Aly gets the egg and cheese out of the fridge ( ...keep in mind she is only 2 years old) and I get the frying pan ready.  She cracks the egg into the bowl and breaks the yolk with a fork.  Once the pan heats up she puts the egg in, and pushes the toast into the toaster.  She knows that we have to wait until the egg turns white before we flip it, and once it hits that point - she is so excited and ready to do the flip all on her own.  Knowing that the pan is hot, she takes the healthy processed cheese slice (yuk) out of the wrapping and whips it into the pan so she doesn't burn herself.  Finally the toast pops and she screams in excitement......it's almost like she has been dreaming of this ALL night long ( or at least since she last ate one at 2am)  After every sandwich is finished being made -- she always says, thank you mommy - I love you.
  Who knew that I would love making an egg sandwich so much.  We then go into her room and watch a movie while she eats her sandwhich.....and eventually she dozes off again.

We are heading into week 4 of a 5 week "induction" period for her treatment, and we are hoping that once this is complete, she will be in remission.  She has not experienced any side effects to the chemo treatments, and although this period of treatment is so important, the chemo is quite light.  The steroids have the biggest impact and they actually kill some of the cancer cells as well.  As we progress through the stages of treatment, the chemo will become more intense but steriods will not be as intense and there will be times where she will not be on them at all.  At this time she hasn't lost any of her hair ( not that she had much to lose) but I did cut off her little baby mullet as I wanted to have it before the chemo made it all matted.

Another big thanks to all of our family and friends who have offered us so much support over the last few weeks, it is truly amazing and overwhelming how many people love our wee Aly!

Why I hate Dexamethasone

.....I hate it because it is 3:21am and most of you are fast asleep, but I am awake and making Aly chicken and rice.  I hate this steroid because it has taken my little Aly away for 5 weeks.  The little girl who loved her night time routine of having a bath, brushing her teeth and reading a story, now stands at the sink screaming while I wash her down witha cloth because she refuses to take a bath.  She screams as I try to brush her teeth because the chemo has caused mouth sores to develop .... she no longer wants a story everynight, instead opting to sit alone in her room watching a movie ( yes - she now has a TV and DVD player in her room).  The little girl who used to love playing outside and going for walks, barely even wants to get out of bed.  She watches movies all day long and periodically helps me make a fried egg sandwich or two.  I do my best to get her up and about, and we normally venture over to Granny and Popa's for a visit just so she can get outside and get some freshair. I hate it because the cute little girl who used to make me laugh and run around the house is an emotional roller coaster and grumpy and moody for most of the day.

Dexamethasone - - I know you are protecting our Aly from some of the side effects that she may experience from chemo, but I hate you right now.  In 2 more weeks I will be happy to see you go so I can have my loving little girl back.

Third week of treatment

We are now into week 3 of Aly's treatment plan.  This first phase of treatment is referred to as the "Induction" period where she receives chemo 1-2 times a week for a 5 week period.  So far Aly has 2 blood transfusions and 1 platelette transfusion and has experience no reactions or side effects to any of them.  Each week we visit the Cancer Centre at KGH for blood work then return later in the week for her chemo treatment.  Blood transfusions may be common for Aly and will be given to her when her blood levels are low.  This week her hemoglobin was low and the blood tranfusion was required to increase her red blood cells.  Throughout the chemo treatments Aly also takes a steriod called dexamethasone, twice a day to counteract certain side effects that she may face during treatment.  This steroid causes her to be quite moody ( that is an understatement) and increases her appetite.  Throughout the day she DEMANDS very specific foods and it seems that she is constantly eating througout the day.  Some of her recent cravings are; chicken and rice, fried egg sandwiches with cheese, strawberries, cucumbers & tomatoes with ranch dressing and white milk..... luckily these are all quite healthy.  She isn't always willing to take her steriod( which is taken orally via a syringe) so we have had recent success with putting in her milk and so far it is working!!

We head back to the cancer clinic tomorrow for a quick round of chemo - - the visit should last less than an hour.