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 !!!

Happy Mother's Day ...

Thank you, mom, for taking care of me day and night. For holding me and rocking me back to sleep at 3 o'clock in the morning when I'm woken by some stranger taking my blood pressure. Thank you for sleeping with me in my (very narrow) hospital bed even though it means you can’t roll over or you’ll get tangled in my IV lines. And thank you for learning very early on how to silence the IV pump machine when it beeps, usually just as soon as I’ve dozed off to sleep. Thank you for remembering all my medications and making sure I get just the right dose at just the right time of day, and for turning it into a game or a race so it somehow feels fun, like when you fill a syringe with water so we can take our medicine together and I can feel like I am not the only one. Thank you, mom, for always (or at least, often) packing the right lunch and snacks and my ipod touch to keep me fed and entertained through hour after hour and day after day at the cancer clinic. Thank you for never failing to take my temperature even when  you've just crawled into your warm cozy bed but think I felt a little warm when you kissed me goodnight. And speaking of that bed, thank you for scooting over so I can squeeze in between you, dad and the dogs when I feel scared in the night and have bad dreams. Thank you for being so supportive when I am on steroids and stocking the fridge with cheese slices, and making fried egg sandwiches with me at 2am because I get those cravings.  Thank you for treating me like a regular kid and letting me climb at the park and fall down and get hurt even when my platelets are low and my legs are already covered with bruises. Thank you for not letting me get away with everything just because I’m sick and for laying the foundation for my future because you fully expect me to have one.


....love Aly xoxo

IV chemo and removal of stitches

So I was trying to prepare myself for our first IV chemo since her port was removed AND the removal of her stitches from her port site.  I knew it was going to be quite an event, I even called the week before to prepare the nurses and ask for some sedation or some drugs to calm Aly down a bit.  The daily nurse visits to change her dressings where her port once was - - we challenging enough, I couldn't imagine the nurses at the cancer clinic trying to remove her stitches.  It would have been close to impossible without someone ( perhaps Aly) getting hurt.  Once we arrived at clinic on April 17th, the nurses agreed with me and were prepared with some adavan (anti-anxiety medication) for Aly.  We dissolved the small pills in some apple juice and Aly drank it with no issues.  It really didn't take too long for the drugs to kick in - - as she did some crafts and had fun in the playroom I began to see her stagger a little, so I had to stop her from running around as I didn't want her to fall down and hurt herself or someone else!  Once the nurses were ready, we went into the treatment room and prepared for the IV "poke". She definitely put up a fight ( she always does) - but it was nothing compared to what it would have been without the drugs.  At times she was even compliant and pleasant to the nurses, so we knew for sure the drugs were working!  We got the IV in and the cutest part was when Aly saw her IV pole ( who she calls Wall-E).  She immediately says, "Wall-E !! I am so happy to see him".  It was so cute.  I think it is comforting to see him/it.   The chemo she received that day was vincristine and I was surprised (I don't know why) at the caution and care the nurses took while Aly received the chemo.  Two nurses stayed with us the entire time and one of them also checked the line regularly to ensure the line was clear and the drug was flowing properly.  Once the treatment was complete we decided to keep the IV in until we received her blood counts back.  They moved us to the corner of the treatment room where Aly could rest a bit and lay under some warm blankets and maybe fall asleep.  Well that plan did not work at all.  She did rest a bit and watch the movie up on my ipod, but  before long I could tell her spunk was coming back and I figured the drug was wearing off.  I called the nurse over and we agreed that we needed to get the stitches out asap!  Once Aly saw the scissors and tweezers that was it - - the tears started and she began to fight the nurse off.  We tried everything - first we just held her down, but she doesn't like that at and now says " don't hold me - don't hold me". So we try to explain that we won't have to hold her if she lies nice and still with her arms down at her side.  Eventually, she did exactly that and the nurse was able to remove the stitch from the right side of the site.  But it was not over, we still had one stitch to remove.  I think at this point it was like she never had any adavan.  Aly had a full blown meltdown.  We tried the same approach as the other side but nothing worked this time.  So the nurse and I agreed that we just had to do it.  So I had the job that most parents would hate, but I prefer to the one closest to her, even if it means I am the one who is physically holding her down.  The nurse was awesome and we got it done pretty quickly, however what we didn't realize that during Aly's fight/struggle she managed to rip the IV out of her hand ( sorry for the graphic details) so there was blood everywhere, but we were able to cover it up so that Aly didn't see it.  It literally took seconds for her to recover and was back to being silly and laughing again.  We took it easy for the rest of the day as we knew that the adavan was still in her system.  The wound is healing very nicely and we no longer need homecare.  We just need to keep it dry and allow it to be open to the air for about 2 weeks.

  Before leaving the clinic I did have a chance to chat with Aly's oncologist and nurse and we discussed next steps for Aly and whether or not she will get another port.  My opinion is, I just want what is best for Aly.  If another port means that she will be prone to more infections and possible hospital admissions then I don't want that.  She never got comfortable with her port being accessed anyway, so I suggested we wait until her next clinic visit to see how she handles getting an IV without any medication / adavan.  We also agreed that there is not really a need for Aly to come every 2 weeks for bloodwork.  Her counts have always been great, and the protocol only calls for monthly bloodwork, but here in Kingston they like to do it more often as a precautionary step.   I asked if we could just come in monthly and do the bloodwork and chemo all in the same day.  That means fewer pokes for Aly and hopefully a better experience for her.  I will still have to notify them if she feels unwell and of course call ANYTIME she might get a fever.  I figure the worst case scenario is we have to give her a small amount of adavan each visit to calm her a bit.

Life without a port!

So today we had our first clinic visit since her port was removed ..... and it was a bloodwork day.  When we arrived the nurses put some cream on her arm ( on the inside of her elbow) to freeze the area so that the "poke"would not hurt.  She had her visit with the pediatrician ( she rarely sees the oncologist anymore as she is progressing so well).  He was able to complete his entire examination with very little drama from Aly ...so we were off to a good start.  He even mentioned how nice it was to see Aly smiling and full of energy.  We talked about whether or not another port would be put in, and I was glad when he asked me what my preference would be.  To be honest, Aly's port was nothing but trouble from day one.  It felt like she had and infection every few months and had to endure the taste of horrible antibiotics in order to treat the infection.  Perhaps this could explain why she freaked out every time they accessed her port - maybe it did hurt her.  Maybe there were some underlying issues and each time they accessed it, it caused her pain.  I guess we will never really know.  I told her doctor that I only want what is best for Aly.  If keeping her "port-free" is the best thing for her, then we can do that.  However, I was very clear in telling him that Aly has been through enough trauma (and drama) over the past 10 months and I would like to keep the next 2 years as low key as possible.  I asked about the possibility of a hickman line ( this is similar to the port, however it is visible from the outside - see below) but her doctor was concerned that Aly was a very active child and didn't want her to get it caught in anything, or have other kids pull at it - I would not want that either.



I mean realistically Aly did not really embrace the port she had. Accessing her was quite an event, and I don't recall her ever having a tear-free access unless she was sedated, so I am not sure how much worse a "needle-poke" would be.  I said I was willing to see how she does over the next month and perhaps we could regroup to determine what would be best for little Miss Aly.
  About 20 minutes after that check-up, it was Aly's time for bloodwork.  Instead of doing all of this in the procedure room that is equipped with 5 chairs for bloodwork etc., the nurses decided to take Aly into a private room.  My guess is they wanted to have a door that they could close so that other kids / parents could not hear her screaming ( no one wants to hear that).  Well she is no fool, she knew exactly what was about to happen, but we were able to lure her up onto the bed to sit on my lap.  We figured if she sat on my lap I could assist at distracting her, and also holding her if possible.  Well the first attempt did not go as planned.  As soon as the needle entered her skin she freaked out and moved her arm enough to cause the vein to bruise. The nurses were able to get some blood, but not enough - so we had to do it again :(  This time we agreed that wrapping her legs and arms in a blanket would be the best way to restrain her.  The issue with this, is Aly does not like to be held down ( ...and really who can blame her).  She always says " don't hold me mommy don't hold me, I want to be brave."  It's horrible to hear, and I will let her go when I can, but unfortunately there are times where she needs to be held.  So we attempted to distract her with my ipod and at first I played the movie "UP" - but that didn't cut it.  So as the nurses did there work, I frantically tried to find a song on the ipod that she loved so that we could distract her.  I found Katy Perry's "Teenage Dream" ....and although Aly continued to scream, kick and cry, as usual I was able to stop for a minute and find the humour ...... because there we were at the cancer clinic, in a room with 3 nurses, a child-life worker, Aly and myself ..... and we were all singing "Teenage Dream" and moving to the music.  Now Aly really wanted no part of it, but it was pretty amazing to see the nurses continue to do their jobs, make a conscious effort to hide the needle from Aly - yet still push forward and get the job done.  I truly respect that.  I am pleased to say that within seconds of it all being over, Aly was wiping her tears and asking go with the nurse to pick out her own superhero bandaid.  There was a drawer full of bandaids like hello-kitty, princess', tinkerbell etc .... and what does Aly pick - the Superheros! ( what a gal).  She immediately wanted to go home, but we had to wait for her bloodwork, so the nurses gave her some Easter treats and after convincing her that there would be no more pokes, she went back to the playroom and continued to play ( fairly well) with some other kids.

Our blood counts came back all in order, so we were off!  We return to the clinic on April 17th for chemo which will be given to her over IV ..... stay tuned to see how that goes !