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.