Cough Cough Cough

Well last night wasn't as restful as I hoping.  Although Aly fell asleep initially, her cough kept her (and me) up for most of the night.  At around 11pm Aly woke up screaming that her arm hurt and within seconds her IV pump started to beep - the IV was toast.  Fluid was building up along her wrist where the IV was put in, and it was rock hard.  It had to be removed.  The nurses put freezing cream on her other arm in multiple places to ensure they had all areas covered as they prepared to put an IV in her other arm.  After about 40 minutes a crew of nurses showed up and new IV was put into her right arm with no issues and the other one was quickly removed.  I was hoping after this we would both settle down - but no luck.  Aly spiked 2 temperatures last night all that hovered around 40 degrees Celsius (104!!)  This was concerning, but after some tylenol she seemed to cool down a bit.  Her cough was horrible last night.  It seemed that every time she was about to drift off she would cough and cough and cough!  The cough she has is not just an ordinary cough - it is horrible.  It is worse than mine - and mine is pretty bad. The night seemed to pass with one cough after another.  Each time a nurse came into to take her vitals - her temp was up to 40 again.  Before long, it was 5am and we were both awake talking about her cough.  We finally turned on the TV and started our day.  She was first checked out by resident who was immediately concerned with her cough but pleased to hear that her lungs were clear.  Aly's doctor later came in and have a quick check in.  I was concerned about how "yellow" she looked today and it turns out her belliruben (sp?) was quite high on Wednesday so they were going to submit her bloodwork for further testing.  We tried to look at the whites of her eyes to see if they were yellow, however it was very hard to find any white patches on her eyeball - they were pure red.  I was quite worried as I looked over at her laying in bed and she just seemed to have this yellow tone about her. 

The Dr wanted to monitor it closer and if necessary would arrange for an ultrasound of her belly to see how the liver is doing.  The day consisted of a lot of nurse visits, attempts to rest, waiting for decisions on tests/ultrasounds etc.  She made up most of that time drawing, watching movies and finally - eating.  She didn't really eat anything yesterday so I was glad that she was actually eating today.  Aly wanted to have a bath so bad today and I kept telling her that I would take her down to the big bath tub at the end of the hall.  It wasn't until just before bath time that we remembered that she had orders that she was unable to leave her room.  She must be highly contagious still, or they are still taking precautions - but Aly was NOT happy.  We ended up getting a little baby bath and filling it with water and placing it in the shower  - she had a blast ( phew).  I now look over and see that she is fast asleep so that is my hint to go to bed.  Tomorrow will be a busy day - but I am hoping that she does not get any fevers tonight and that we are discharged tomorrow

Admitted :(

Well since our last visit to clinic last week, Miss Aly has not been herself.  It was hard to nail down what the issue was, she was on steroids so the whiney episodes and sleepiness made sense.  It wasn't until Monday morning when she woke up with goopy eyes, that quickly turned into pure bloodshot eyes the following day.  She was sent home from school on Tuesday with what they thought might be pink eye.  I do recall her eyes being sensitive and a little pink that morning, however I was shocked to see what they looked like when I got home from work that night.  The tops of her eyes were pure red - where they should be white.  I took sent an email down to her clinic advising that I thought she had pink and looked for some direction on what we should do.  They suggested that we keep her at home and give her some polysporin drops to help her eyes and let them know if it got worse.  Well that night I noticed it was worse, so I sent a photo to them that clearly showed the red mapping on her eyes.  I finally settled Aly in bed and although she felt very warm her temperature never exceeded 37.4.  In the morning I knew I wouldn't be sending her to school so off to Granny's she went.  I had an early morning meeting, but as soon as I left I asked that Granny take her temperature - 38.4 so I called her clinic and they told me to come down.  They took blood, urine sample and even took extra blood to do cultures on her blood in case she had no immune system.  Before long the results were back and her neutrophils were 0.01 ( anything under 0.5 is considered neutropenic) so gave us an automatic admission.  Her IV was put in and within moments she was receiving fluids and her first round of antibiotics.  If all goes well she will be admitted for 48 hrs and then be discharged with antibiotics to take at home.  This virus is common in kids right now and apparently can hold on for 2 weeks or so.  Since she has been unwell for over a week know, I hope we are half way through it!  Since we arrived at the hospital her eyes have gotten worse, it looks like the redness is spreading and moving lower in her eyes.  They don't seem to bother her too much and they are no longer yucky.  Her ear is apparently also infected, and it seemed to really her bother her last night, but tonight it seemed much better.  Not sure if that is the antibiotic working or not.  The antibiotics she is on are not really to treat the virus as there us not really much you can do for a virus, however it is really to prevent her from getting anything else - especially since she has absolutely no immune system to fight it.  When nurses come into the room they are fully masked and wear an additional robe to protect themselves and Aly - - it doesn't really seem to phase her - likely because she was so used to them coming in to hang her chemo bag and they were dressed as though they were being launched into space.  To think that they are fully dressed in this protective gear, including face shield because they do not want to expose the chemo to their skin - yet they are about to inject it into the veins of my baby - hmmm something is not right here. 

Anyway - - Aly is fast asleep tonight and I hope that she has a good sleep and that she does not wake when the nurses come to check her temperature throughout the night.  Oh I guess I should mention that tonight when she woke from her late afternoon nap - her fever spiked to 40.4 Celsius ( 104 Fahrenheit) - that was a bit concerning, however after some meds it seemed to drop quickly.  I was just glad we were here when that happened and not at home.  Her wee body was so warm, she could have heated a small building.  I will wait to meet with her Dr in the morning to see how she is progressing.  I will be sure to update ...

Not quite herself ....

So poor Aly has been feeling under the weather for sometime now.  She has had a cough that has held on for a month or so ... she doesn't cough too often, but when she does it sounds horrible.  I think it's beginning to get a bit better.  Last week we went to clinic and Aly was definitely not herself.  That morning she was unable to eat or drink anything as she had to have a spinal tap/lumbar puncture as part of her regular treatment - -and she was not happy!  She woke up really early, which was a bad start to the day - all she did was wine for a drink or food or even some water.  I had to say no.  She ended up falling asleep on the couch as she watched TV.  She woke for a bit as I got her dressed and loaded her in the car to head down to clinic.  I noticed that she fell asleep on the way down, and when we got to the hospital she didn't even wake up.  I carried her in from the parking lot and we signed in at the Cancer Centre and walked over to the kids waiting area.  She was still asleep.  I sat down and she lay in my arms - out cold.  I was a little concerned, as this was not like Aly at all.  Even the nurses and other families in the waiting room knew it was out of character for her ... but at least as I was at the right place.  I was interested in seeing what her blood counts were and if the Dr would find anything during her exam.  I think we waited for about half an hour before I had to take her to get weighed and her height measured.  I was able to wake her, but I am not sure if I asked her now if she would recall any of it.  While I was up I took her into the treatment room where they put freezing cream on her arm ( for the IV) as well as on her lower back for the lumbar puncture.  She slept through it all.  I think we waited another 30 minutes before they put us in a treatment room and let Aly lay down.  The resident came in to examine her, and was able to complete the full exam with Aly asleep.  She woke briefly to roll over so a full examination could be completed.  When the resident returned with the Oncologist, she made up wake Aly up and she spoke with her for a bit.  I think she wanted to make sure she was coherent etc.  One of the nurses was concerned that maybe her blood sugar might be a bit low.  After the Dr's left the nurse came in and put in the IV....and yes, she slept through that.  Well most of it.  I think she woke briefly - looked at the needle going in and said "oh ya, that's what I wanted".  Then she drifted off again. 

The nurse took some extra viles of blood to check her cultures as well as her blood sugar.  She also left behind a cup for a urine sample.  Aly continued to sleep until we needed to change room in preparation for her procedure.  She continued to sleep in that room until I eventually woke her as I knew the anesthesiologist would need to examine her.  Brian and I waited in the room until she was sedated then we waited outside until we were able to return to the room.  The procedure was short and the Dr told me it went "beautifully".  Recently Aly has woken up from sedation a bit "wild" - she is whiny, sassy and really moody.  Once the procedure is over she gets IV chemo and needs to keep her head down for about an hour in order to ensure the spinal treatment is effective.  I was concerned she was going to wake and be feisty as usual - but not this time. She ended up sleeping for the entire hour, until I eventually woke her.  When I woke her she was a bit groggy but fine.  I fed her a snack and some juice and eventually went back to the playroom for a bit while we waited for her to have to pee so we could fill her cup and be on our way.  After about 15 minutes - we were off!  Aly spent the rest of the day at her Granny and Papa's and seemed to be ok.  Her blood work showed that her body was fighting something, but the good news is she had the immune system in order to be able to fight it.  That is all I really cared about.

Progress ...... XOXO

HAPPY NEW YEAR 2013

HAPPY NEW YEAR 2012

A time to grateful .... and a time for change.

Well the first semester ( if that's what you call it) of school is now over and I think I can safely say is was a success.  Aly's biggest issue with attending school was the social anxiety, but it seems that she eventually adjusted well.  We have her attending 2 schools right now to ensure she has a full week of school and having all that socialization has really helped her.  Last week we attended her holiday concerts at each school.  The private school put on a great performance where her class sang a number of Christmas songs along with costumes and gestures.  It was great and funny all at the same time.  Aly just stared at me the whole time and had the most uncomfortable look on her face.  She sang most of the songs (quietly), with minimal actions or facial expressions.  When she wasn't singing she was biting her lip and staring directly at me.  She was very excited after the performance but wanted to leave school right then, but thanks to her teacher, she decided to stay for the rest of the afternoon ( only an extra hour).  The following day was the Nativity Concert at her other school and it was put on by all the primary grades with Aly's class opening the show.  The show was pretty much the same as the previous day - lots of Christmas songs.  Aly was in the front row and stood very still - looking directly at me and I am sure I spotted the odd grin every once in a while. It was also a great show!  After the whole show was over, Aly caught wind that some of the other kids were going home with their parents, so Aly was determined not to stay.  Luckily Granny and Papa were there and that is exactly who she wanted to go home with.
  Over the past few weeks I have really taken sometime to really appreciate Aly's health and progress in her treatment, but was also thrown off when she developed a low grade fever. She ended up being fine ( she was just fighting a bug) but it reminded me that she was still in treatment and really only one fever away from being admitted.   I had the chance to visit some friends who are currently staying at the Ronald McDonald house in Toronto while their daughter undergoes her second bone marrow transplant ( she is 4 years old).  To walk inside Sick Kids and see just how big the hospital is and to think that all of those rooms are filled with sick kids, I was overwhelmed and so thankful for Aly's diagnosis ( wierd) and progress.  I had the chance to speak with one mom who was there with her son who had brain cancer.  It was his 5th birthday the following day and she was so grateful that he made it that far.  When she asked about Aly and I mentioned that she was in remission, she started to tear up and said that it was so great to hear that remission is even possible.  There is so much attention and media focused on all types of cancer ( and I totally agree with it all) ... but where is all the attenion on Childhood Cancer?  Cancer is the number one disease killing children from age six months to young adulthood. It is the leading cause of non-accidental death in children and over 160,00 kids are diagnosed with Cancer each year world wide and about 1,500 of those kids are from Canada.  210 Canadian children die from the disease and about 10,000 Canadian children are living with cancer today.  Studies show that 80% of kids will survive childhood cancer, and although that number sounds great - what about the other 20%??!!  Recently there was a film created to highlight the importance of raising awareness of Childhood Cancer and what needs to happen to ensure that more drugs are developed and more focus is placed on finding cures.  Check out this website http://www.thetruth365.org/ and watch the video please.  It is just under an hour, but well worth it.  I will warn you - there is nothing warm and fuzzy about this movie - it is real, it is fact and things need to change.

First Day of School

Well Aly was very excited for her first day of school, but before that day could come we had to pay a special visit to the school to meet her teacher, and principal.  We were joined by the community liason nurse from the Cancer Centre, along with myself, Aly and Granny ( Daddy was working in Labrador).  We were invited into the Principals office and asked to sit around a large circular table.  Aly was very well behaved and amused herself with drawing and looking at books while we chatted.  I think Aly must have been the first student with cancer that the teacher and principal has had at school, because as I told them about all that we have gone through over the past year, the look on their faces was as though they had seen ghosts.  I have told the story so many times that it just rolls off my tongue now and I almost forget that those I tell have never heard of the struggles that these kids in treatment go through.  To most people, the thought that children get cancer is not something that never crosses their minds, and when it does, they do not have a true understanding of the impact it can have on their lives and the lives of those that love and care for them.  Anyway, we went over what to expect in terms of missed days due to lack of immune system and we provided them with a copy of memo which had to be distributed to all students advising that we must be notified if a child has chicken pox, or has come into contact with chicken pox. Aly was able to visit her classroom and was very excited - she loved that the toilet was just her size and no need to use a stool to get up on the seat!

Aly had some challenges adjusting to school and the high number of students in her class seemed to intimidate her.  She spent so much time alone over the past year and even when she returned to daycare there were only 4 other kids for her to interact with.  In order to ensure that she gets the social exposure she needs, we also enrolled her in a pre-school program so that she would have exposure to other kids on the days that her JK class was not happening.  I am happy to say that almost 2 months later and the tears at drop off have stopped.

It was hard to watch her enter the classroom, and although all the kids were playing on one side of the room, Aly would go to the opposite side and find something to play with.  She was hesitant to jump right in and often asked the teacher for quiet time.  I would bet the noise levels would get pretty high and she seems to be sensitive to loud noises.  Then when the teacher told me that she appeared quite anxious at recess time, it really upset me.  The interesting thing is that apparently the kids are quite drawn to her, so when she goes off on her own, many of them will join her.  Every day seems to get better.  She now comes home and tells me that she made new friends and tells me their names.  It seemed like a coincidence early on when she would say that all her new friends at school had the same names as kids from daycare - - so I knew she was telling "stories".  Now she comes home with names I have never heard of, so I know it's real.  I am sure that much of her adjustment is pretty typical for all kids starting school, but it's hard not to worry about how other kids will treat her.  She used to talk so openly about cancer but when they were learning about Terry Fox at school I asked if she told her friends about her experience with Cancer .... her response was "no mommy, that is my little secret".  That totally broke my heart.

What a difference a year makes ....

Aly days before diagnosis

So it's been a while since I have updated the blog, and I often get comments from people asking why it hasn't been updated, or asking that I please update.  I took some time today to look at some of my first entries and realized that my first entry was just over a year ago, July 13th to be exact.  Going back to read the first few entries brought be back to a time that seems like forever ago.  It was interesting to see that an entry was made on this day in 2011, and as it turns out, was quite a challenging day for us.  Seems like a lifetime ago, as I look up and see Aly giggling now as she runs around the house throwing her little bouncy balls down the hall and rolls on the floor in laughter as the dogs chase them around sliding on the wood floors and crashing into walls.  A year ago today we a tough one.  It was the third week of our treatment and everything was still so new and fresh.  I think I was on autopilot at this time and as I look back it is much harder for me to read it, as I am sure it was for me to write it then. I was so deep into it, that I had no perspective to understand what was really happening .... but that day was a bit of an eye opener.  It was a very uncomfortable time for Aly and I remember that we barely stepped foot outside last summer, so when people talk about the weather last year and compare this summer to last - -I have absolutely no input.  I couldn't remember if it was hot, windy, rainy or anything.  I do remember late in the summer there was a heavy rainfall, and that some of the streets were flooded, but I now realize that the "outside" world was not something that I was thinking about.  My second entry in the blog was "Why I hate dexamethazone".  This one really hit home with many readers, as did "Bonding over a fried egg sandwich".  I had many people come up to me, or write to me personally and on the blog about how these posts impacted them.  They would tell me that they actually took the time to make an egg sandwich with their kids and spend some quality time with them .....wow.  These were actually the 2 posts that made me commit to the blog. I knew that people were reading it, and not only was it helping me, but it was helping others.  Helping others keep updated on Aly's fight, but also helping others appreciate their own lives and stop and take sometime to spend with their kids.  Over the next few months the blog was updated weekly, and sometimes daily.  We spent a lot of time in the hospital and once Aly was asleep there was not much for me to do so writing became my priority.  The blog was also created to document our journey and to alleviate some of the burden that our families had in updating close friends, neighbors and family.  Cancer treatment is complex - - lots of phases, lost of clinic visits, lots of tests, transfusions, drugs with big names that now just roll off my tongue and lots and lots of waiting.  Its crazy to think our parents could not only keep up with it all, but even understand it without being caught up in the emotions.  I feel like when I received the confirmation that Aly in fact had cancer, I took a few minutes to have my breakdown, but literally got back up on my feet and said "Ok now what".  When I did that, I know I left alot of people behind ( not literally) with their jaws open in awe of what was happening.  Many did not move forward and accept it as quickly as I did ( I didn't have time to live in denial) and a lot of their time was spent trying to figure out how it would happen to such young innocent and otherwise healthy child, and trying to find something to blame as to why she "got" cancer.

Aly - summer 2012

What a difference a year can make.  Getting here was no walk in the garden, that's for sure - but we made it.  The journey is not over, but the fight continues and we really appreciate the country we live in, our health care system and access to the drugs and phenomenal doctors and nurses that we have.  I do not take any of that for granted.  Since starting this blog I have also started a twitter account for aly (@alysfight) and have began to follow other children, from around the world, that are currently fighting some form of childhood cancers like leukemia.  I see that they do not have access to the drugs, local care or studies that we have been fortunate to receive.  It breaks my heart to see that in the UK families need to raise insane amounts of money to travel abroad just to have surgery and treatments that we have access to here in Canada. Given the size of the clinic (quite small) we have here in Kingston at KGH, they would, in my mind earn a "world class rating" for the facilities, care and honest interest the medical teams have in each and every child.  They know all of our names, a bit of what our lives are like, and know our kids better than many of our close friends and even family do. 
As Aly continues her fight, we need to get prepared for her next challenge, the one that will be harder for me to handle than I would have thought ........ the fact that she starts Jr Kindergarten  in September !!!