Well I was very happy to see her dip into her Happy Meal box last night for dinner - - not because she was reaching for a burger, but because she was doing it all with her right hand - the hand she hadn't moved in a week. I was relieved that the infection was beginning to clear and she was getting movement back. The use of her right hand continues, and although slow at times, she is still able to move her fingers and raise her arm straight up in the air. Tonight however, I noticed that he left arm was being favoured a bit and she was no longer moving it at the pace she once had. The only way to describe the movement, is that is looked like her arm was heavy because she was moving it so slow. I informed the nurse and the resident came into examine her. She did complain that her arms hurt, but I really don't want to give her too much pain medication if she is able to tolerate it a bit. That might sound mean, but the only medication she can really take right now is codeine, and I am just not a fan of giving my little girl a narcotic. She doesn't seem to be in too much pain now, because as I glance across the room she is fast asleep on her hospital bed. She had some visitors today and didn't really have an afternoon nap, so she is pretty sleepy.
One of the nurses reminded us of the importance of Aly sitting up when she eats, so every time she eats now she says " mommy I have to sit up to eat remember". We also need to get her up and moving. If you think about it, she has been lying down for a little over a week now so we need to get those little legs moving again - Doctor's orders. She really wants nothing to do with getting up and moving, but this afternoon we got her dressed and went for a walk down to the playroom. She cried as we got her dressed and out of bed, but we made her walk from her bed to the door. From that point Brian picked her up and carried her to the play room. Once we were in the play room she really had no interest in playing, but I did pull out some things to remind her of all the great toys they had. She wanted to return to her room, so we asked that she walk to the playroom door then daddy would carry her back. She agreed, but as we got close to the nurses station, Brian put her down and asked that she walk to her room ( which was only have 6 adult steps). Her legs were shaky. Although her legs remain the size they have always been, they now have to bear the extra 10lbs of weight that she has gained over the past month. This was definite baby steps, but it was nice to see her up and moving. We will continue this routine until she is able to walk to the playroom all by herself. If the weather is good on Tuesday, we might venture out to the park, or down to the water to skip some stones.
Sunday, 31 July 2011
Friday, 29 July 2011
.....not much to report.
Well today was the big day - she had her post induction bone marrow and lumber puncture in addition to her first round of chemo into her spinal fluids. Unfortunately we don't have anything to report in terms of results. We have allowed Aly to participate in studies that occur in the US ( which has a much larger study base than Canada) so her marrow etc has to be sent to the US. We might have some preliminary results sooner, but we will have to be patient. Her Dr has been out of the country for the last week, so it will be interesting to chat with her this week and see what she things about all the issues Aly has been experiencing ( no movement in her arm, bad bad diaper rash, blood infectio etc...)
In general I think Aly had a better day today. After her procedures she spent most of the afternoon napping, but when she was awake Granny noticed little bit of our Aly coming back. Her appetite has decreased a bit but I am not sure if that has to do with being in the hospital, being off the steroids or a side effect of the chemo she received today. Her arm is still bothering her, but I was pleased tonight to see that she was able to lift it straight into the air and even move her fingers slightly. The Dr said that her blood is no longer growing bacteria, so hopefully they are somewhat related and she is on the mend.
I think I must partially be in denial that Aly has cancer. I walk around the pediatric floor and find myself saying - - Aww look at that poor little kid / baby - I think it has cancer - - poor thing. It takes a minute before it registers that my little baby has cancer too. I think I just have such strong feelings that she is going to beat this, and I am so caught up in living in the moment, that perhaps I haven't given myself the time to step back and think of what is really happening........we can put that piece on hold for now and I shall continue to do what I am doing - because I think it is working for me.
I cannot say enought about the nurses that work on the pediatric floor - - they are fantastic! For that of you that think of Aly often and worry about her, hopefully it helps you to know that she is in good hands.
In general I think Aly had a better day today. After her procedures she spent most of the afternoon napping, but when she was awake Granny noticed little bit of our Aly coming back. Her appetite has decreased a bit but I am not sure if that has to do with being in the hospital, being off the steroids or a side effect of the chemo she received today. Her arm is still bothering her, but I was pleased tonight to see that she was able to lift it straight into the air and even move her fingers slightly. The Dr said that her blood is no longer growing bacteria, so hopefully they are somewhat related and she is on the mend.
I think I must partially be in denial that Aly has cancer. I walk around the pediatric floor and find myself saying - - Aww look at that poor little kid / baby - I think it has cancer - - poor thing. It takes a minute before it registers that my little baby has cancer too. I think I just have such strong feelings that she is going to beat this, and I am so caught up in living in the moment, that perhaps I haven't given myself the time to step back and think of what is really happening........we can put that piece on hold for now and I shall continue to do what I am doing - because I think it is working for me.
I cannot say enought about the nurses that work on the pediatric floor - - they are fantastic! For that of you that think of Aly often and worry about her, hopefully it helps you to know that she is in good hands.
Thursday, 28 July 2011
... another day in KGH
Not much progress today. Aly is still favoring her right arm and barely moves it - - and it is keeping all the Doctors and nurses on their toes. Aly had some random fevers today, but in general seemed ok. Her belly is so distended from the steroids ( and food) that her breathing continues to be shallow and she sweats like someone who just ran a marathon. I have been worried about her blood sugar levels since the steroids can negatively impact her pancreas and many people can develop diabetes post chemo - not to mention the fact that he daddy is a diabetic as well .....but I was pleased to hear that her blood sugar was 7.0 - - right on track! - phew.
I have noticed that she does not eat as much when we are in the hospital, but her appetite is definitely there. We realized last night that the only L'il Cesar's in town was located in the west end, so Brian drove out and got her a cheese pizza to get her through the night. Surprisingly, she slept from 10-5 without waking for food - just a couple of requests for milk.
Looking at her now, she is lying in bed watching a movie ( surprise!) and her skin is so stretched and has a shine to it. Some of the nurses remember her form her first admission, and a few of them did not even recognize her. The only way to describe the way she looks, is uncomfortable. It reminds me of being 9 months pregnant, not wanting to walk, feeling puffy and bloated and having a hard time breathing because of the size of my belly. I really debated putting a picture of Aly on here in the state that she is in - -but I think it is important for people to see the impact that these steroids can have on a child. Some of the people that have come to visit Aly have been really impacted and upset by the way she looks, and I think it's because it's almost unbelievable that in such a short period of time ( a month) a child who used to be so skinny and weigh 30lbs - - can now tip the scale at 40lbs.
Tomorrow is the big day - - and one that I am not sure how to prepare myself for. All I can focus on right now is the current state and knowing that she is comfortable, fed and clean. Tomorrow the whole process will begin at 10am where they were take her to be sedated. The first procedures that will take place are the most important ones ... the bone marrow test and the lumber puncture ( spinal tap). These tests will help them to determine how the first round of treatment went .... and ideally all of the leukemia will be gone. Apparently it is quite simple to kill the leukemia cells - - the chemo that she has been receiving has been quite mild, it is the steroids that have the most intense impact on the body. As her treatment continues the chemo will become stronger, but steroid use will be come minimal and only for short periods of time. In addition to those tests they will also do an MRI on her arm to try to determine why she is not using her right arm. There could be a blood clot, or there may be other issues that require her port to be take out fully and a new one inserted - - but that would not likely happen until next week. While Aly is sedated they will also take advantage of the fact that she can not kick, scream, spit and bite them ( yes she does all of that from time to time) .....and they will give her a bath and wash her hair. Hopefully that will help make her feel a wee bit better too!
.....over the past few days I have had so many people tell me how much they see me in Aly. Now to be honest I am not sure how to take that. Prior to being sick, everyone that the fair, slender, tall sweet child looked just like her daddy. Now that she is puffy, opinionated, cranky, bitter and demanding - all of a sudden she is her mother's daughter. But you know what I am ok with that because if she has her mommy in her this poor little illness called leukemia doesn't stand a chance.
I have noticed that she does not eat as much when we are in the hospital, but her appetite is definitely there. We realized last night that the only L'il Cesar's in town was located in the west end, so Brian drove out and got her a cheese pizza to get her through the night. Surprisingly, she slept from 10-5 without waking for food - just a couple of requests for milk.
Looking at her now, she is lying in bed watching a movie ( surprise!) and her skin is so stretched and has a shine to it. Some of the nurses remember her form her first admission, and a few of them did not even recognize her. The only way to describe the way she looks, is uncomfortable. It reminds me of being 9 months pregnant, not wanting to walk, feeling puffy and bloated and having a hard time breathing because of the size of my belly. I really debated putting a picture of Aly on here in the state that she is in - -but I think it is important for people to see the impact that these steroids can have on a child. Some of the people that have come to visit Aly have been really impacted and upset by the way she looks, and I think it's because it's almost unbelievable that in such a short period of time ( a month) a child who used to be so skinny and weigh 30lbs - - can now tip the scale at 40lbs.
Tomorrow is the big day - - and one that I am not sure how to prepare myself for. All I can focus on right now is the current state and knowing that she is comfortable, fed and clean. Tomorrow the whole process will begin at 10am where they were take her to be sedated. The first procedures that will take place are the most important ones ... the bone marrow test and the lumber puncture ( spinal tap). These tests will help them to determine how the first round of treatment went .... and ideally all of the leukemia will be gone. Apparently it is quite simple to kill the leukemia cells - - the chemo that she has been receiving has been quite mild, it is the steroids that have the most intense impact on the body. As her treatment continues the chemo will become stronger, but steroid use will be come minimal and only for short periods of time. In addition to those tests they will also do an MRI on her arm to try to determine why she is not using her right arm. There could be a blood clot, or there may be other issues that require her port to be take out fully and a new one inserted - - but that would not likely happen until next week. While Aly is sedated they will also take advantage of the fact that she can not kick, scream, spit and bite them ( yes she does all of that from time to time) .....and they will give her a bath and wash her hair. Hopefully that will help make her feel a wee bit better too!
Wednesday, 27 July 2011
.....it's always something
Well I have been looking forward to this day for 5 weeks ..... it is the day I give her the final does of dex ( the steroid). BUT .... just when I had something positive to look forward to - the Doctor called. Turns out that Aly has an infection on her port incision AND her blood. Sooo........ off to the cancer clinic we went all prepared to be admitted. They did the routine bloodwork and gave her some antibiotics for her infection. Since the bacteria in the wound and the blood were they same, and she didnt have a fever, doctors are pretty sure that its a contamination infection, which means that the wound was infected, and each time the port was accessed it was pushed into her blood. And to top it all off she is still having issues with her right arm. She seems to be favouring it and really hasn't moved her right hand in a couple of days. The xrays were clear, so the next step is an ultrasound, then a potential bone scan to ensure that the infection is not impacting her to that extent.
As a result of all of this, her bone marrow test and spinal tap scheduled for Thursday will likely be pushed out to Friday. Whent he doctor told me that I looked him straight in the eye and said - - this doesn't mean she needs to continue to take her steriods does it???? He resonded with a firm "no". Phew ... not sure I would have taken that news well. As long as those are done, and she is in the hospital I know that she will get the care that she needs.
Once we got up to her room the nurse took her temperature and it was 38.1 - - so she had a fever. They gave her some tylenol and seemed to do the trick. As usual, she ate and ate and ate tonight - -first a slice of pizza, then a cheesburger from McD's, then more pizza, some chicken and veggies and half a banana - - - and about 3 sippy cups of milk. Now, finally, at 9:20 she is fast asleep.....hopefully she is out for a bit and gets some well deserved rest.
......not too sure what is on the schedule for tomorrow, but I will keep updating.
As a result of all of this, her bone marrow test and spinal tap scheduled for Thursday will likely be pushed out to Friday. Whent he doctor told me that I looked him straight in the eye and said - - this doesn't mean she needs to continue to take her steriods does it???? He resonded with a firm "no". Phew ... not sure I would have taken that news well. As long as those are done, and she is in the hospital I know that she will get the care that she needs.
Once we got up to her room the nurse took her temperature and it was 38.1 - - so she had a fever. They gave her some tylenol and seemed to do the trick. As usual, she ate and ate and ate tonight - -first a slice of pizza, then a cheesburger from McD's, then more pizza, some chicken and veggies and half a banana - - - and about 3 sippy cups of milk. Now, finally, at 9:20 she is fast asleep.....hopefully she is out for a bit and gets some well deserved rest.
......not too sure what is on the schedule for tomorrow, but I will keep updating.
Saturday, 23 July 2011
....fever time
Well it finally happened, the day I have dreaded - Aly had a temperature of 38.4 last night and I had to page her oncologist. They told us on the day that she was diagnosed, that 38 is the magic number and even issued us a hospital approved thermometer. We were informed that as soon she reaches a temperature of 38 or higher, we need to have the oncologist paged, regardless of day or time. Leave it to Aly to run a fever at 6:30pm on a Friday night - - when everyone has gone home for weekend - so I paged the Oncologist. I was impressed at how quickly I was connected to him - and after some brief discussion we headed in truck to KGH ( there was a bit more drama during this time - but I will leave that part out - - thanks for being here Erin!)
So when we walked in emerg I was told to inform the triage nurse that we were "direct to peads" - this way the on-call pediatrician would see Aly and not the regular ER doctors. We were isolated for a very short period of time until they had a bed ready for her. Once she settled a couple of nurses came down to access her port and take some blood samples - - again, a whole lot of drama that I will leave out, the important parts is that they got the blood they needed. The two nurses that came down already knew Aly from her last admission to KGH and I am not sure about Aly, but I was definitely happy to see some familiar faces. They were already aware of how "pleasant" Aly can be ( not) so I didn't have to explain the impact that steroids were having on her. It wasn't until 10pm that we had some xrays done to ensure that she did not have any pneumonia in her lungs, as the Dr's were concerned about her breathing. Everything else seemed normal for Aly, however the main concerns were her rapid short breaths, increased heart rate and excessive sweating. Apparently those can be completely normal for a child on dexamethazone ( and that has gained 10lbs in 4 weeks), or it can be signs of pain and infection. With clear x-rays they were able to send us home. I feel bad for all the patients that were in the ward with Aly as she has quite the lungs and kept yelling - I wanna go home, I wanna go home, HOME, HOME - home NOW!!! ( all night long) It's a good thing she is cute because when they all saw her leave, they just tilted their heads to the side and gave her a smile.
It was an exhausting night but I definitely learned a few lessons.
I need to know her blood levels from her most recent visits - everyone kept asking me what her white blood count was etc. At least I knew that she was not neutropenic and her levels were good - - I just didn't know the number. I also have to keep track of her bowel movements and pay closer attention. It's amazing how important your pee/poop frequency can determine your overall health.
Well its 10:28am on Saturday morning and she is still asleep. When we finally got home last night she was wide awake so she stayed up a bit with daddy and watched TV in the living room before hitting the hay at almost 2am. I bet she is as exhausted as we are....... And so begins the longest week ever -- so much happening this week. Not only does she have her bone marrow and spinal tap on Thursday, it can't happen until 12 noon and she cannot have any food / drink before the procedure as they have to sedate her. WOW - they have no idea how ridiculously hard that will be. Aly eats non-stop from the moment that she wakes up and when I tell her she can't have anything - she will lose her mind. Perhaps I will keep her up on Wednesday until 2am again, so she will sleep in 11am - then I only have to distract her for an hour :) Fingers crossed......
So when we walked in emerg I was told to inform the triage nurse that we were "direct to peads" - this way the on-call pediatrician would see Aly and not the regular ER doctors. We were isolated for a very short period of time until they had a bed ready for her. Once she settled a couple of nurses came down to access her port and take some blood samples - - again, a whole lot of drama that I will leave out, the important parts is that they got the blood they needed. The two nurses that came down already knew Aly from her last admission to KGH and I am not sure about Aly, but I was definitely happy to see some familiar faces. They were already aware of how "pleasant" Aly can be ( not) so I didn't have to explain the impact that steroids were having on her. It wasn't until 10pm that we had some xrays done to ensure that she did not have any pneumonia in her lungs, as the Dr's were concerned about her breathing. Everything else seemed normal for Aly, however the main concerns were her rapid short breaths, increased heart rate and excessive sweating. Apparently those can be completely normal for a child on dexamethazone ( and that has gained 10lbs in 4 weeks), or it can be signs of pain and infection. With clear x-rays they were able to send us home. I feel bad for all the patients that were in the ward with Aly as she has quite the lungs and kept yelling - I wanna go home, I wanna go home, HOME, HOME - home NOW!!! ( all night long) It's a good thing she is cute because when they all saw her leave, they just tilted their heads to the side and gave her a smile.
It was an exhausting night but I definitely learned a few lessons.
I need to know her blood levels from her most recent visits - everyone kept asking me what her white blood count was etc. At least I knew that she was not neutropenic and her levels were good - - I just didn't know the number. I also have to keep track of her bowel movements and pay closer attention. It's amazing how important your pee/poop frequency can determine your overall health.
Well its 10:28am on Saturday morning and she is still asleep. When we finally got home last night she was wide awake so she stayed up a bit with daddy and watched TV in the living room before hitting the hay at almost 2am. I bet she is as exhausted as we are....... And so begins the longest week ever -- so much happening this week. Not only does she have her bone marrow and spinal tap on Thursday, it can't happen until 12 noon and she cannot have any food / drink before the procedure as they have to sedate her. WOW - they have no idea how ridiculously hard that will be. Aly eats non-stop from the moment that she wakes up and when I tell her she can't have anything - she will lose her mind. Perhaps I will keep her up on Wednesday until 2am again, so she will sleep in 11am - then I only have to distract her for an hour :) Fingers crossed......
Wednesday, 20 July 2011
...heading into Week 5
Although this is only week 4, I can't help but think ahead to next week. Instead of just getting chemo next Thursday, it's the BIG DAY. Aly will undergo another bone marrow test and spinal tap. She will be sedated for both procedures ( thank goodness) ....... and then we wait to see what her results are. At this phase she will have completed her 5 week induction period and the hope is that the results of her test will show that the cancer is gone and she will be in remission. I have no idea how to feel, I have to remain hopeful, however I also have to be prepared if it's not the news we want to hear. I guess that is why the saying " Plan for the worst, and hope for the best". I will continue to remain positive, but the time we have to wait will be the most emotional ( and longest ) wait yet. Based on the results from that test the Dr's will determine the next phase of her treatment ....... and she will have to continue to receive chemo for 2.5 - 3 years - - mainly as a preventative measure.
Aly had her bloodwork done yesterday and her results were strong, her platelettes are back up to what they would be for a "healthy" child. I was nervous that she was going need a transfusion, only because she was so lathargic, but everything was good. After the clinic visit yesterday she was in better spirits and I want to thank Erin and Gracie for bringing her over some movies last night - - she has watched them both twice now!
......fingers crossed that all goes well tomorrow when she receives this weeks dose of chemo .... then we will move ahead into Week 5 - - I feel like I might need a lot of wine next week! Thank you to everyone who reads the blog, I hope it helps you as much as it seems to be helping me!
Aly had her bloodwork done yesterday and her results were strong, her platelettes are back up to what they would be for a "healthy" child. I was nervous that she was going need a transfusion, only because she was so lathargic, but everything was good. After the clinic visit yesterday she was in better spirits and I want to thank Erin and Gracie for bringing her over some movies last night - - she has watched them both twice now!
......fingers crossed that all goes well tomorrow when she receives this weeks dose of chemo .... then we will move ahead into Week 5 - - I feel like I might need a lot of wine next week! Thank you to everyone who reads the blog, I hope it helps you as much as it seems to be helping me!
Monday, 18 July 2011
..... Please let me trade places.
So today was probably one of the most challenging days yet. I can see Aly becoming more and more uncomfortable and happy every day. It's like she doesn't really know what she wants or where she wants to be. On Sunday she wanted to go to Grannies - - so we headed over to Grannies and after an hour or so, she just wanted to go home ..... so home we went. We got settled in her room and started to watch a movie and she started saying " Granny's" "Granny'".....so off we went to Granny's for dinner. It was so hot out that night and she said she wanted to sleep in her room at Granny's so I figured we were there for night. Well that soon changed just after dinner where she said she just wanted to go to her house and sleep in her own bed.....yup, you guessed it - we went home.
Today I just couldn't make her happy. The chemo has made her potty training a done deal and she is back into wearing diapers and as a result has developed the most painful looking diaper rash I have ever seen ( sorry for the details) - so she can barely walk, doesn't want to be picked up and doesn't want anyone to touch her. I figured of all days, we needed to have a bath. She wanted nothing to do with the bath but it was necessary - - so she kicked and screamed the whole time but we got her all cleaned up and freshened up for the day. ( I should add that I had to bribe her with a Happy Meal and the star wars toy that comes with it - she got a C-3P0 figure that dispenses stickers)
I just want to trade places with her until all of this phase is over.
A 2 year old should be out playing with their friends and not sitting in their room watching movies all day.
A 2 year old shouldn't have the emotions of a 15 year old; she should only cry when she doesn't get her way.
A 2 year old should not be depressed she should be outside chasing butterflies.
A 2 year old should not have to go through the pain and discomfort that she is experiencing right now.
A 2 year old should not be worried about her next trip to the Doctor, she should only be concerned about what colour play-doh she wants to use - or what her favourite colour is.
A 2 year old should not have to be exposed to such harsh drugs and chemicals.
I wish that the movie Freaky Friday was real and that I could trade places with my daughter......even if just for one day to give her some relief. I recently read a quote that another mom whose daughter has leukemia wrote and I really related to it .... she said ..... "
Today I just couldn't make her happy. The chemo has made her potty training a done deal and she is back into wearing diapers and as a result has developed the most painful looking diaper rash I have ever seen ( sorry for the details) - so she can barely walk, doesn't want to be picked up and doesn't want anyone to touch her. I figured of all days, we needed to have a bath. She wanted nothing to do with the bath but it was necessary - - so she kicked and screamed the whole time but we got her all cleaned up and freshened up for the day. ( I should add that I had to bribe her with a Happy Meal and the star wars toy that comes with it - she got a C-3P0 figure that dispenses stickers)
I just want to trade places with her until all of this phase is over.
A 2 year old should be out playing with their friends and not sitting in their room watching movies all day.
A 2 year old shouldn't have the emotions of a 15 year old; she should only cry when she doesn't get her way.
A 2 year old should not be depressed she should be outside chasing butterflies.
A 2 year old should not have to go through the pain and discomfort that she is experiencing right now.
A 2 year old should not be worried about her next trip to the Doctor, she should only be concerned about what colour play-doh she wants to use - or what her favourite colour is.
A 2 year old should not have to be exposed to such harsh drugs and chemicals.
I wish that the movie Freaky Friday was real and that I could trade places with my daughter......even if just for one day to give her some relief. I recently read a quote that another mom whose daughter has leukemia wrote and I really related to it .... she said ..... "
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