Sunday 29 January 2012
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!
Tuesday 24 January 2012
Sunday 15 January 2012
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.
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.
Monday 2 January 2012
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.
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.
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