I am Aly Davis ...

My name is Aly, and I have a strong and mighty heart,

There isn't one thing in the world that I can't out-trick or out-smart,

Though in size I'm still just little, with my courage I'm ten-feet tall,

With enough time to catch my breath, before you know it, I'll show you all, 

How far will be the rocks I throw,
How many will be the things I know,
How far will be the places I go,
And one day, I'll say I told you so

I am Aly Davis, and I knew it all along,

I am as brave as a lion and I am resilient, I am strong.

 

A poem written by Brian's cousin Alisha........(thanks Alisha xoxo)

Play Date

Well it was a special day today .... Aly and I went to her daycare this morning so she could play outside with all of her friends.  When we first pulled into the driveway, she was excited and wanted to see Denise but when we drove up the drive way she saw all the kids run towards the gate and I think she got nervous.  It has been about 2 months since Aly has been to daycare or really had any form of socializing with kids her age so I guess I understand why she might have been anxious.  We got out of the truck and I carried her into the backyard, and our dog Lola followed close behind.  At first she had a firm hold of me, but all of the kids were great and gave her the space she needed.  It didn't take long before she was playing with the toys in the yard and asking to go on the swing.  She interacted with each of the kids, played with all her favourite toys and ran around screaming with joy like any other child her age.    We stayed for a while and Denise and I had a great chat while her daughter played with Aly and watched her to make sure she was OK.  It was getting close to lunch when we decided to leave, as I could see that Aly was getting tired.  She said goodbye to all of her friends and gave Denise and her daughter hugs and thanked them for the visit........I think we were all happy to see Aly playing with her friends and in such great spirits.......thanks Denise and kids xoxo

... She's baaack!

Well it has taken some time, but the steroids are gone from Aly's system and she is back to normal ..... even better than normal.  I have noticed a difference in Al'y speaking, comprehension and dexterity since she was first diagnosed.  It has nothing to do with the treatment, but I see her growing and developing like a healthy little girl.  She can use her hands better than ever... and I was so pleased to see her pull the lid off of a magic marker today ....... what I didn't like seeing were the marks it left on our LCD TV.  It appears Ms. Aly found some alone time to add her signature art work to the TV.  Good news is it isn't really noticeable, unless you look at the TV at just the right angle.
  We had a clinic visit today and Aly underwent her final LP ( spinal tap ) for this round of treatment.  We arrived at the clinic just before 8:30 am and since it's been some time since Aly was there ( due to her hospital admission) she was a bit upset and "feisty" when the nurse tried to access her port.  It is never a fun procedure.  As lovely as the nurses are, poor Aly has to sit on my lap as I hold back her arm and the nurse cleans off her chest and prepares to access her port.  I had put a freezing patch over the area this morning at about 7:45, so it was nice and frozen by the time the nurse inserted the needle into her chest.  They promise me that she cannot feel it, and that getting blood and flushing her port does not hurt, but I am not sure I buy it 100%.  She screams and screams every time but I try to tell myself those tears are more about anxiety than pain.  Blood work is done and before long we are in a treatment room surrounded by Doctors, residents and a nurse.  I was impressed that with a room full of about 8 people not including my mom, Aly and I - Aly didn't seem phased at all.  I lift her onto the bed and try to distract her as the resident accesses her port and begins to administer the sedative.  The first med that she is given is to relax her - - and it works.  She rolls back into my arms and begins to talk about what is happening in the room.  She mentions that it is too loud and asks everyone to be quiet, then as the resident pushesg the syringe of sedative into her IV, we tell Aly that we are giving Wall-E ( her port) a drink of milk ( it's white liquid).  In seconds I now have my daughter laying next to me stoned out of her mind .... and finally drifts off to sleep.  I think it is important to mention that only a few years ago they did this procedure with no sedation. I cannot imagine holding a 2 year old, (as feisty as Aly) tightly in the fetal position while a doctor inserts a needle full of chemo into her lower spine.....no thanks!    The entire procedure only takes about 10 minutes, however today they needed to top of the drugs a bit as she did not fall into a deep enough sleep initially.  She had a good sleep after it was all over, and when she finally woke up she remained in the room and watched her favourite movie, Wall- E on a portable DVD player.  Once she had rested for an adequate amount of time, we were able to leave.  We then drove home, picked up Papa and took him out to lunch for his birthday ...... Aly picked the location, so McDonald's it was.

September 17th - Fundraiser **SOLD OUT**

Home Sweet Home

....well if you asked me a week ago how I felt about leaving the hospital with Aly, my stomach would have turned.  I was dreading the life we had lived for the past 5 weeks while Aly was on steroids, depressed and wouldn't leave her room.  I feared she would get a fever and we would have to rush her back down to emerg at KGH like we did on July 22rd.  But since the fevers have stopped and each day the steroids appeared to be leaving her system, I was thrilled when one of the nurses finally asked Aly's doctor when we would be discharged.  I was afraid to ask the question.  I was afraid that they would tell me "tomorrow" as much as I feared hearing we would be in for another 3 weeks.  The timing was perfect, I was ready to leave, and after watching an old video of herself playing with Lola (our yellow lab), Aly wanted to go home too.
  On the morning on Friday August 12th I hoped that Aly would sleep in.  Before being discharged she had to be sedated and undergo one more lumbar puncture  ( spinal tap).  The nurses came in early that morning, around 6am to obtain some blood samples from Aly.  This process had become somewhat routine for her, and could normally sleep through the process, but not this morning.  She woke briefly, as she doesn't like to be woken the the site of nurses messing with her port and attempting to obtain blood.  She wined a bit, told them to stop and go away, but as quickly as they entered the room, they were gone.  Luckily she fell back asleep, as did I, only to wake again at 8am to a nurse administering Aly's final dose of antibiotics ( for her apparent blood infection).  She fell back asleep again so I took that opportunity to get myself a coffee.  The LP was planned to begin at 10am, so a nurse quietly came into her room and put some freezing cream on her lower back so that she would not feel the pain of the needle in her lower back.  Aly finally awoke that morning in a fairly pleasant mood, and when the team was ready I carried her to the treatment room where they started to sedate her.
  As difficult as it is to watch your child be sedated, I have such confidence in the the Doctor's and Nurses at KGH that I didn't spend one second worrying about what she was going through - - and as usual, I looked to my sense of humour to distract me from the situation.  There was my 2 1/2 year old laying on a bed, stoned out of her mind.  Her eyes were almost shut as she looked around the room saying " I just want to relax now" .... then asking the resident, with an intoxicated slur " what are you doing with that..." then just as she fell asleep, in a very excited voice, said, " I think I want some pizza....."  I gently kissed her on the forehead, told her I loved her then left the room.  She returned to her hospital room in the arms of the most caring and loving nurse we could ask for .... and Aly was awake but groggy.  The resident that had performed the procedure ( I think) handed her 3 little toys and hung around for a while to continue to chat with Aly.  For those of you reading this that might not know Aly too well, or haven't had the opportunity to have a conversation with her, she has quite the vocabulary and seems to continue to amaze the doctors and nurses that see her.  Not only does she speak well, her ability to comprehend and the sentences that come out of her mouth are fascinating .... its like she is an old sole, and is wise beyond her years.
  After resting for a bit, we happily packed our bags and were picked up by Granny before noon.

....going home on Friday!

....not sure if I wanna say "yay" or "holy crap".  It's time to return to the real world.  This past 7 weeks has been such a world wind .....Aly getting sick - being diagnosed with leukemia - her first admission - clinic visits - STEROIDS - Food, Food and more Food!! - - a visit to Emerg after hours - - then this admission which will end up lasting 16 days.  Does this mean that she will be back into her old routine?  My fingers will be crossed that she does not get any fevers so we can avoid late night trips to the ER.

Each day has been getting better.....Aly now asks to go outside and she is now a HUGE fan of the downtown market .....maybe this will convince Brian that we need to move downtown and NOT to the country. 

We had a very special visitor this morning who gave Aly a Magic wand - - tonight she held the wand up in the air - hit her belly with it and "mommy my bug is now gone - I am not sick anymore".  It floored me, I didn't know whether I was going to laugh because it was so cute, or cry because she knows she is sick.  This special visitor was a mom that has been through this before, pretty much a stranger to me, but for some reason chatting with her in the room made me feel connected in some way.  It is inspiring to hear stories of kids that have been through this and here how strong they have been and see how these parents are survivors themselves ( ...trust me if you have ever had to live with a kid on steroids you have the right to call yourself a survivor).  When Aly was first diagnosed everyone kept saying "kids are so resilient" and it is so true ... they adapt to situations that others would kick and scream over ( ok - Aly does her share of kicking and screaming).

....well fingers crossed that tomorrow is a nice day as Aly wants to go back down to the market to buy more fruit.  If she doesn't sleep in tomorrow ( today she woke up at 10:15am) maybe we will have breakfast downtown too. 

....still at KGH

Well we are on day 11 of a 14 day dose of antibiotics for the blood infection Aly had, and so far all of her blood work has come back clean.  They had one final sample taken last night, so hopefully we get those results tomorrow.  Although I am curious about when we get to go home, I have yet to ask the question....as I mentioned before the idea of being away from here is a little frightening.  The only reason I say that now is, with this next protocol of treatment Aly is getting, it will really impact her white blood cells and they will begin to decrease therefore making her neutropenic ( no immune system).  So .... every time she has a fever over 38 degrees .....of to Emerg we go :) It's just such drama for her to go through  ( ...and us).
   Aly has been running a slight fever each night for the past week, and I think I figured out why today.  She has finally cut her 2 year molars. Although every parent out there would agree that teething causes redness in cheeks and fevers - most Doctors would disagree ( as I have found out ).  Oh well -- I think that is what has caused the fevers - so that is what I will stick with.

We have finally gotten Al outside for some fresh air.  Yesterday we headed out just before lunch ... we walked through the park and headed for the market where we picked up some fresh raspberries, blueberries and peaches - - yummy!  We headed down to the waterfront to see the big boats, then spent some time feeding the ducks before we had lunch and headed back to the hospital.  Aly hasn't walked too much over the past month, so her legs are pretty shaky and she doesn't move as quickly as she once did.  This morning her legs were sore, but she still managed to do a couple rounds of the pediatric floor before asking to go outside.  So we got dressed, grabbed the stroller and headed back downtown.  Daddy met us in the park and we hit the Antique market, swung by Pan Chancho for some muffins, coffee and special sugar cookies for Aly ..... then back to the waterfront to relax for a bit.  We then had brunch and headed back to the hospital.  When we passed through the park we saw all the little kids playing in the splash pad - - it was sad because Aly just looked at all the kids playing and laughing.  She asked to get out of her stroller, but when we got her out, she couldn't really walk - - it seems to be her right leg that is bothering her the most,  When she takes a step it points to the left a bit and it almost looks like it is asleep or heavy.  Daddy carried her from the park all the way back to KGH - - it was pretty muggy out so Brian sweat the whole way - Aly thought it was pretty funny.

Uncle Stew and Auntie Reb stopped by today with a one of a kind Tshirt for Aly ..... although she was very grumpy and not up for visitors when they were here, she is loving her new Tshirt...... she has actually fallen asleep with it on tonight - - she refused to take it off. It is officially her first concert T-shirt ..... the first of many I hope.

What is next?

Well let me start by saying that today was a good day.  It started out challenging as Aly was unable to eat this morning as she was being sedated so they could perform an MRI and another ultrasound.  The ultrasound that was performed the other day was not really clear, and although it showed a blood clot it was not clear how bad it was.  Under sedation Aly wasb totally still and they were able to get the best shots possible.  The whole process took about 3 hours to complete the MRI ( it was delayed as she had a full bladder, and they needed to wait for her to pee) and the ultrasound.  I took the opportunity to eat some lunch, go for a another nice stroll along the waterfront, and just relax a little on my own.  We have only received the results from the second ultrasound and we were relieved to hear that there was no blood clot.  Now its hard to say if perhaps there never was one, or if the few doses of blood thinner helped alleviate the problem  - but regardless I am thrilled.  Having a blood clot as an oncology patient can be very challenging as there are many times where she would have to undergo procedures like the spinal tap and they would need to be very cautious of her bleeding too much etc..... I feel slightly more relieved about it all now, than I did yesterday when we heard she was in remission.

  We initially thought Aly was considered as Low Risk ALL and was able to participate in a new study where she could potentially receive safer drugs with lower risk of long term side effects.  Unfortunately the Dr pulled us aside today and told us that some other blood work had impacted those results and she is now considered Average Risk ALL.  All this means is that she will undergo standard treatment and does not qualify for the new tests.  The survival rates for this is still 95%, and the treatments seem to be pretty standard.  Once we meet with the Dr tomorrow, I will have a better idea of what the next steps are.

 Each day I see more and more of my little Aly coming back.......today was no exception.  She laughed alot, played around with nurses and visitors and we have started a reward/sticker program for her that seems to be working.  Every time she is nice to the nurses when they do her vitals she gets a sticker - -after she gets 4 stickers, she gets a little surprise.  I just think it's funny that I have to create a reward program for her to be nice - - perhaps someone should have done that to me years ago, might have saved some people some grief.  I still have no idea when we will be discharged, I think now it all depends on the results of the MRI.  If it shows that she has a bone infection, then we are here for another 6 weeks.  It might sound like horrible news, but I get a weird sense of comfort here.  If she gets a fever, we can do blood cultures immediately.  Her vitals are taken on a regular basis ..... all these things make me comforted knowing that she is in good hands.  If being admitted to KGH is what is best for Aly - then it is what is best for me.  I cannot say enough about the nurses here ..... some have their moments, but then there are some that just SHINE SHINE SHINE.  They blow me away, how much they care about Aly.  One in particular tells me how she thinks about Aly all the time.  When she is not working, she worries about who is looking after her and if they are doing what they should be doing.  Aly wasn't even her patient today, yet she was the one that took 3 hours out of her day to stay next to my little girls bed to make sure she was ok through the MRI and ultrasound.  She even told me that she looks forward to coming into work so she can have Aly kick her out of her room - - ha!
This whole experience has put life into perspective for me.  I no longer care about wanting a fancy car, living in a big house or wearing $150 tops.   Life is too short and too important to spend trying to please others who really don't give a shit about you anyway.  Those that are important are the ones that are there for you in the hard times even more so than the good times.  I think that being surrounded by the great family and friends is what has helped us get through this and that is totally priceless.

Good news today .....Aly is in REMISSION

Well I wasn't expecting it today, but we got the great news that Aly is in remission!  The induction treatment ( and those damn steroids) worked and all the cancer is gone!    When the Dr came into her room today, I had no idea what she was about to tell us.  My mom and a close family friend were in the room when the Dr said that she had good  news to share....... the test results showed that Aly was in full remission and now considered LR - ALL .....that is Low Risk Acute Lymphoblastic Leukemia. 

Although I was overjoyed with the news, I knew it was not the end.  Some will think that Aly will now get up out of bed and walk out of the hospital like a healthy little girl. but I know that is not the case.  We still have a long road ahead of us, and we will talk further with the Dr's tomorrow to see what that road looks like.
....but in the meantime I will enjoy the moment and be thankful with the great news that has come our way .....it's about bloody time.