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 !

Good Bye Wall E

Well we initially were admitted into the room the Aly was diagnosed in - - and although we have since spent the night in that room, this time I wanted no part of it.  I am not normally one to ask to have my room changed, but knowing we could be in the hospital for a little while, I knew I couldn't do it in this room.  I mentioned it to the nurses and while I went home to gather some belongings they arranged to have us placed in another room - - I was very grateful.  Well we settled in and the surgeon came into to discuss the removal of her port - it was scheduled to happen on Wednesday March 21st as early as they could.  I understood that there were others who had to have surgery that day but I wanted Aly's done early.  She had to fast before the surgery and having just finished steroids, she would still have a healthy appetite in the morning and I would have to distract her from having anything to eat.

Luckily they came and got us for surgery at about 9:15am.  As we were prepping for surgery I told the doctor and nurses that Aly is quite feisty, specially when waking from sedation ..... they just smiled at me like I was over-reacting or something.  The procedure didn't take long and by the time I grabbed a coffee and returned to the waiting room, not much time passed before the surgeon and her resident came looking for me with a funny expression on their faces.  They said - umm she's awake and she is asking for you.  As soon as I entered the recovery area I could hear her screaming ..... ahhh that's my girl I said.  She was particularly feisty this day and I could do very little to console her as she didn't want me to look at her and didn't want me to hold her - - but after some time I finally got her to sleep then we were returned to her room.  Luckily they put an IV in her arm while she was sedated so she now how to have all her antibiotics given to her in her arm.  When Aly woke up again she was happy to see that her Granny was there ..... and she was back to her usual self.  She actually likes to stay over in the hospital.  It wasn't until that night that she asked why there was a patch over Wall E ( her port)  I told her that Wall E was no longer there ....... and she started to cry.  I weird reaction I guess, but she really identified with her Wall - E and spoke about it like it was a person ( or a fictional robot garbage compactor).  I later explained to her that Wall E has gone onto another mission to help another little girl.  The next day however she still referred to her IV pole as Wall E, so I guess he will remain with us for a little bit longer.
 We were discharged from the hospital after 4 days and sent home with the yuckiest tasting oral antibiotics and were given home care to change her dressings daily from the surgery.

  So with her port gone - - each visit to the clinic will mean that she will have to be poked with a needle like adults are ..... this will not go over well.  I will be open minded and see if she handles it well, but I would prefer that he port be put back in considering she has 2 years left of treatment.  I shall keep you posted.

Another infection

Well maintenance isn't all it's cracked up to be.  I am not sure what I was expecting, but her multiple drugs she takes on a regular basis and the fact that one of them is steroids has proven to have some challenges.  The moods, cravings and appetite she has while on the steroids, even though its only 5 days a month - is crazy!!  And to think this is going to continue for the next 2 years!! I can't imagine what it will be like once she goes to school in September - the poor teacher.  But although I complain about all of this, I have to say that my little fighter is doing well.  Her counts continue to be where they should be, her hair is growing back ( blonder than before), she continues to grow and put on some healthy weight.  We know alot of other little fighters out there who are going through much tougher times than Aly, so it sounds so strange to say, however I am grateful for the type of cancer she has and the fact that we have made it into maintenance with very few serious issues. Obviously I would prefer that she not have cancer at all, and when she was first diagnosed and I was told that she had the "good" leukemia - I was furious that anyone could call any form of cancer the "good" one ..... but now I get it.

We have however, had one hurdle while in maintenance - - Aly's port.  I guess you could say that her port has been trouble since day one.  The only times she has been admitted to KGH was for blood infections.  Doctors could not truly pinpoint the issue back to her central line, however it was the only thing to explain why she lost the ability to move her arms back in the summer.  She always complained that it hurt when they accessed her port, and although everyone said that it doesn't hurt - - maybe it did.  She was always very protective of her port, would cover it with her hands often and at night while she slept she would also have her hand on it.  About a month ago after her nurse removed her gripper following treatment, some icky fluids leaked from her port ( sorry for the details) so a swab was done and extra blood work was done to see if her blood was growing any bacteria.  Results for her blood came back negative, but there did seem to be a pocket infection surrounding her port.  As a result we were sent home with some oral antibiotics to add to her   list of meds to take.  The infection appeared to go away and Aly never developed a fever throughout this whole time.  It wasn't until our last clinic visit (March 20th) where she receive IV chemo ( vincristine) that the same issue happened ( and I am always the one that seems to notice it first).  Just as the gripper was being removed from her, more yuckiness oozed from her port.  By this time this gripper was out and the nurse went to get the Doctor as Aly had a total meltdown in my lap.  Its tough to even touch her chest where the port is, but at this moment I was holding her down while the nurse attempted to squeeze out any access "stuff".  Once the Dr arrived a decision was quickly made - - IV antibiotics would start immediately, we would be admitted and her port would be removed asap.  So we had to put the gripper back in for the time being and the nurses wanted to freeze the site again before accessing, but I figured since she was already in a state, we might as well just do it now so that she could hopefully relax a bit with no more pokes. We were placed in a temporary room in the clinic and the antibiotics ( vancomycin) was started immediately.  At this time I went to get a coffee and attended a meeting at the hospital that I had with the pediatric oncology team ( I am the parent rep) while Granny stayed with Aly.  Just as our meeting was about to end, Aly's doctor was paged and she came over to me and said Aly is reacting to the meds she is getting.  She seemed rather calm about it and said she would be fine, but regardless I rushed back to the clinic to find Aly on her bed, playing on her ipod with a face the colour of a cherry!  I guess it is a normal reaction and all they have to do is slow down the infusion of the anitbiotics.  We eventually got to go upstairs to our room!

Welcome to Maintenance

Well today is the big day - - we begin the final (yet long) stage of Aly's treatement - - Maintenance".  We went to the clinic yesterday for blood work so it would speed up our visit a bit today.  Aly is participating in a study that is helping researchers determine the best way to treat this phase of treatment, long term.  At this time, the concern is on decreasing the long term side effects of the drugs that she receives.  The study looks at the impact of decreasing doses or frequency of chemo.  Today will learn what "arm" of the study Aly will fall into.  It is all selected randomly, so that process is probably happening as we speak.  The day will begin for Aly with a spinal tap followed by chemotherapy.  I am not 100% sure yet, however I am pretty sure that I will have to give her oral chemo daily in addition to another chemo ( orally) once a month.  It already makes me anxious thinking about how I am going to do that.  It is almost impossible to give Aly any medication unless it is camouflaged in honey - - and I can't do that with chemo.  I often think that one thing I would never have to worry about with Aly, is her getting into the medicine cabinet.  She wouldn't even think about opening up a jar and taking any medication - - she tries to avoid it at all times :)  We will also have to deal with my good friend "dexamethasone" - the steroid that I despise.  I think she will just have to take it for 7 days each month

I wanna be sedated ...

On Friday we arrived at the Cancer clinic at 8:45am - - the roads were a bit icy and Aly slept in a bit longer than expected, so we were about 15 minutes later than I wanted to be.  It was a somewhat normal clinic visit, except I was unable to give Aly any food as she was being sedated that morning for a lumbar puncture/spinal tap.  She did ask for some food, but seemed to understand when I told her she needed to have an empty stomach because she was having a "nap" today at clinic.  That seems to be the  only way that I can explain to her what happens at clinic when she is sedated.  I don't think its necessary to tell her that the Dr's are inserting a needle into her lower back, as I think that may freak her out.  She seems to be content in knowing that as she lays on the cot, surrounded by doctors, residents, nurses, her Granny and Mommy.  She knows that she is going to have a rest, because in the past, when she gets her first dose of meds she has said, "is it ok if I just rest now...." and will lay down on her back on the table.  The last few times she has been sedated, she has been pretty feisty and tried to stand up, or swing her arms around, so I didn't expect her to be so calm that day.  She was sitting nicely on the bed looking down at something in her lap, perhaps her toes, and seconds after the "white" medicine was administered she fell limp and leaned forward into my arms. I then put her head in my hand and place her back onto the bed, kissed her on the forward and left the room. The procedure only takes minutes, but I always take that opportunity to go and grab a coffee.  I know that she is in good hands and that there is always a nurse, resident or doctor that stays with her until I get back into the room and she wakes up.

So she slept for about 30 minutes after the procedure and then wanted to watch a movie.  While she watched the movie she received 2 more rounds of chemo ( vincristine and methotrexate) then she sat on her daddy's lap while the nurse ( and I) de-accessed her port  - - and we were off!  Aly is such a strong kid and never seems to get sick after receiving all these meds.  The nurse does give her some medication beforehand to avoid the nausea, and I will give her some gravol at home, but she has yet to get sick ( knock on wood).  We are back at the clinic in 10 days to receive her final round of chemo in this phase of treatment ( interim maintenance II)  I am not sure what is next, but I am sure I will find out in 10 days!

Lola Love

Just wanted to share a "feel good" picture.  This is Aly getting a little Lola Love!

Mommy why don't I have any hair?

This may sound like the craziest thing, but there are times when I forget that Aly has cancer.  You would probably wonder how on earth that is possible, but I really do.  Perhaps we have experienced the worse.  I know I could not say this in July.  Those 28 days of steroids, constant eating, mood swings, seeing Aly so uncomfortable .... there is no way I could have forgotten about this horrible disease that has taken over her life.  But now, its like the calm "after" the storm.  I think the only ones that can truly understand this, are those that see her on a regular basis.  They see her laugh, they see her play, they see her expressing her creativity in painting, making crafts and music.  She doesn't appear "ill".  I worry that I am being too relaxed, or taking her "health" for granted. I see those commercials on TV, or infomercials for Sick Kids hospital or St. Judes, and it always shows the kids with Leukemia, hospitalized with feeding tubes etc.  I know there are many forms of treatment, and each case is different, but I sometimes get wrapped up in thinking " wow, are we the lucky ones?" ..... or are we still only 7 months into a 2.5 year treatment plan, and we haven't even started to experience the hard times. I do not take these good times for granted at all.
  Aly used to have sleep overs at her Granny and Papa's every Sunday night before she was diagnosed, however since that time she has not slept anywhere but in her own bed and the hospital.  Last night was the first time that she stayed over at Granny and Papa's again.  She was so happy....and so were they.

A couple nights ago I was laying in bed with Aly just before bedtime.  She likes me to tell her stories about her ( Once upon a time there was a girl named Aly ......) but they have to be true - I am not allowed to make anything up - so we just relive the day, or a special occasion.  That night I told her the story of Christmas, and we talked about preparing for Santa coming, and how fun it was on Christmas day to see her other (second) cousins.  As I am trying to find the words and scenarios to make up these stories she loves so much, she cuts me off and says " mommy, why don't I have any hair"  Well she might as well have just kicked me in the stomach, as I had no idea how to respond to this.  I often struggle to figure out if I want to tell her she has cancer, and if I do, what kind of detail do I go into.  Right now she knows that she had a bug in her blood and her Dr gave her medicine that helped get rid of that bug.  She has asked why we still go to clinic if she is better, and I just tell her that we just need to make sure that bug never comes back.  I don't know that I want her to know that she has no hair because of that bug.  Now as a sidebar here, Aly didn't have a lot of hair to begin with, however it was just yesterday that I really noticed how much hair she has lost.   I often forget that she is a smart kid, and we talk about her, in front of her, she understands what we are saying and hears us, even if it seems like she is not paying attention at all.  The other day she also asked me if she was fat - that shocked me as well.  I know that body issues are often an issue with young girls, but not 3!!!  Again, I think she has probably heard me, and others, talk about the weight she gained while on steroids not to mention the fact that she gets weighed each time she visits the cancer clinic ( she weighs 33 lbs and is 95.5 cm tall).  Anyway, back to the question of why she has no hair ..... I just let her know that everyone has different hair.  I said that Granny has curly hair, Papa has grey hair, Heather has long hair, Uncle Stew has dark hair.  I also told her that when I was her age I didn't really have any hair either .... and her cousin Karlee was the same ( I had to go and get a picture to prove it to her)  She seemed to be comfortable with that response because within minutes she was fast asleep in my arms.  I hate that she has noticed that. When I think about it there are not too many kids at the clinic that have no hair right now, so perhaps she feels a bit different.

Everyone says that its nice that she is so young and will probably not remember any of this.  Part of me hopes she forgets the hard times - the steroids, the meltdowns when they access her port, the sedation etc ... but I am not sure when or how I tell her she had cancer, especially when she is old enough to know what that is.  When she goes to school next fall, do I tell them?  do I have to?  what if I don't?  I want her to be "Aly" and just like the other kids in her class, I don't want her to be the kid with cancer.  But at the same time, perhaps its an opportunity to teach others about cancer ..........ahhhh - so confusing.  Who am I kidding, we can't even decide on where she is going to go to school. I suppose I should figure that our before I worry about how the teachers and other students will treat her.

This is Aly on June 19th 2010 which was a Sunday, and she was admitted to KGH 5 days later and received her first blood transfusion.

This is Aly 2 nights ago.  Its hard to see here (I will try to get a better shot of the back of her head) but she has nothing but chemo fuzz.

Happy New Year!

Well I think we just finished up the hardest round of treatment with Aly - - and all right before the Holidays.  She was having daily chemo treatments then once that stopped we watched her immune system plummet, but Aly surprised us all again - - it was down for only days.  I was worried that she would be neutropenic for Christmas and not be able to play with her cousins and other family members ... but just days before Christmas her blood results came back great!  What a gift! Aly had a great Christmas.  She was so excited for Santa to come, and she even came out of her shell a bit at the Cancer Clinic.  To say that she is not the happiest kid, or cooperative kid at clinic is a bit of an understatement.  I am not blind to the fact that she gives the nurses and doctors a hard time with her "attitude" and at times they have admitted to drawing straws to see who has to access Aly's port, or even take it out.  When they told me that one day, whether it was a joke or not, I laughed out loud.  I am sure its not easy to hold a sharp object, and know you have to be so precise when a screaming 3 year old, with a very big vocabulary, screams not so nice things to you.  But lately that has changed.  We have began to distract her with an ipad, and now instead of being mean to nurses she says "please don't hurt me" just as they are about to poke her.  That might actually be harder for them to handle then the tears.  Anyway, over the past few weeks she has been very cooperative with the nurses and doctors.  One of the Doctors even said - - well this is a lovely little girl you have with you today.  It was funny considering that during the last visit Aly flopped around the exam table like a fish out of water and screamed at the top of her lungs, but the experienced Doctor just did what he had to do and got his job done. I told him I was impressed how he just kept going.  Now I will say that it would not be easy for everyone to see what we see in clinic. I am so thankful that I am not an overly sensitive person - - I know what has to be done for Aly and that it will make her better, so I do what I have to, to assist the nurses and doctors, even if that means restraining Aly and holding down her arms and head while they access her - I will do it.  I will do it because I know that it has to be done, otherwise she would not be able to fight this disease like she has.

  To be honest I was expecting the last round of treatment to be much worse than it was. I was expecting her to lose all of her hair, and although it is so fair and she definitely did experience hair loss, she still has hair left including her eyebrows and lashes.  I keep looking ahead in her protocol to see what drugs she still has to take - - and I wonder if she will lose it.  I was expecting her to be sick.  You would think that daily chemo would make you throw up or have an upset stomach, but she was a trooper!  Last week we started the next phase of treatment called Interim Maintenance II - - and this protocol of all treatment includes chemo drugs that she has already received before - - Vincristine and methotrexate.  As usual this round began with a spinal treatment and she will receive another one in 7 weeks.  Thank goodness they sedate Aly for this treatment, as I doubt she would stay still for the Doctors.
  It is great to see Aly doing so well and hope that he spirits remain high over the next few months.  Her daddy left to go back to work in British Colombia today and she will be able to talk to him daily on the phone or skype until he returns home in 4 weeks.  I am grateful that he makes this sacrifice for his family.  I know that being away is tough, but it allows me to be able to be at home with Aly - and I wouldn't have it any other way.