And so as we are nearly at the end of September (wow, I can't believe how fast the year is going), we have now reached our daylight savings time and last night we all had to set our clocks one hour forward. I guess very soon it will become a bigger challenge getting Caitlyn and Bianca to sleep at night (even though they are in really good sleep routines), but very soon it will only get dark around 20:00 or 21:00 each night. It does have loads of advantages though!
I was busy unpacking some of the boxes and came across Bianca's very first set of discharge notes. The one from her admission on the 2nd of June 2007. Wow, what a trip down memory lane. I've been wondering what some of Bianca's blood levels were when she was first admitted and so it was great finding this discharge note. Of course way back then nothing made sense, but now I understand so much more, and so the information is much more meaningful.
I remember sitting in this little room with Doctor Anne and she talked about a lot of stuff. She mentioned neutrophils, but I had no idea how we would ever know these (didn't form the connection with neutrophils and blood results). I distinctly remember asking her about Bianca being allowed swimming, and that we got a definite no. And we signed loads of documents and had lots of reading material, but other than the words Acute Lymphoblastic Leukemia, we didn't know anything. It was only once we reached the next phase several weeks later that I suddenly realised that our initial documents contained our treatment plan, but initially I just drifted from one hospital appointment and blood test to another, week after week after week. And as much as some people expected us to understand everything within a matter of days and being able to answer complex questions, it simply wasn't like that. It just took us so long to truly understand what was busy happening. But I certainly am happy that I know much more now. I've never read more on any other subject than leukemia since.
I also came across the discharge note from when Bianca was admitted for 34 days with some or the other viral infection. They never really figured it out, but reading it now, she was pretty unwell during that time - of course I knew it then, but you sort of push those kind of memories to the back of your mind. She was on oxygen for most of that hospital stay.
And then the one from the day that Bianca reacted to her PEG shot (a chemo shot being administered into her leg). Her saturations dropped all the way to 79% and she required oxygen.
In hindsight our first 6 - 8 months were pretty hard. But we coped and somehow we managed. Of course we had the Child Cancer Foundation with us from day 1 and a number of people stayed in regular contact with their ordinary, normal news. That meant the world to us and still does. That people could just stay in touch with their own news. For us the first 6 - 8 months pretty much meant isolation and just to read about normal, ordinary stuff reminded us that there was a world outside the cancer world.
But it is great to be on Maintenance, even it it still means medicines and chemo every single day and hospital visits every single month. Just to be able to do some normal stuff, to feel more relaxed about going out. And last year this time, I wondered when we would ever experience normal again, but here we are, and look at us now. Of course I know how fast things can change, but while it is going well and things seem stable, then we enjoy it and take advantage of it.
I was busy unpacking some of the boxes and came across Bianca's very first set of discharge notes. The one from her admission on the 2nd of June 2007. Wow, what a trip down memory lane. I've been wondering what some of Bianca's blood levels were when she was first admitted and so it was great finding this discharge note. Of course way back then nothing made sense, but now I understand so much more, and so the information is much more meaningful.
I remember sitting in this little room with Doctor Anne and she talked about a lot of stuff. She mentioned neutrophils, but I had no idea how we would ever know these (didn't form the connection with neutrophils and blood results). I distinctly remember asking her about Bianca being allowed swimming, and that we got a definite no. And we signed loads of documents and had lots of reading material, but other than the words Acute Lymphoblastic Leukemia, we didn't know anything. It was only once we reached the next phase several weeks later that I suddenly realised that our initial documents contained our treatment plan, but initially I just drifted from one hospital appointment and blood test to another, week after week after week. And as much as some people expected us to understand everything within a matter of days and being able to answer complex questions, it simply wasn't like that. It just took us so long to truly understand what was busy happening. But I certainly am happy that I know much more now. I've never read more on any other subject than leukemia since.
I also came across the discharge note from when Bianca was admitted for 34 days with some or the other viral infection. They never really figured it out, but reading it now, she was pretty unwell during that time - of course I knew it then, but you sort of push those kind of memories to the back of your mind. She was on oxygen for most of that hospital stay.
And then the one from the day that Bianca reacted to her PEG shot (a chemo shot being administered into her leg). Her saturations dropped all the way to 79% and she required oxygen.
In hindsight our first 6 - 8 months were pretty hard. But we coped and somehow we managed. Of course we had the Child Cancer Foundation with us from day 1 and a number of people stayed in regular contact with their ordinary, normal news. That meant the world to us and still does. That people could just stay in touch with their own news. For us the first 6 - 8 months pretty much meant isolation and just to read about normal, ordinary stuff reminded us that there was a world outside the cancer world.
But it is great to be on Maintenance, even it it still means medicines and chemo every single day and hospital visits every single month. Just to be able to do some normal stuff, to feel more relaxed about going out. And last year this time, I wondered when we would ever experience normal again, but here we are, and look at us now. Of course I know how fast things can change, but while it is going well and things seem stable, then we enjoy it and take advantage of it.
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1 comment:
Hello to the White's in New Zealand,
You do not know me; I was directed to your site by another parent whose child faced the beast called cancer.
Have you heard of a group called People Against Childhood Cancer ? We are a network of over 900 parents, friends, family, concerned citizens and childhood cancer organizations (CureSearch, Alex's Lemonade Stand and more) whose sole mission is to present a unified voice to raise awareness of childhood cancer. The website format is unique, you can have friends, post photos and videos, blog, participate in Forum discussions, start or join Groups that interest you, chat live with other members, and promote or learn about fundraisers. It's free, interactive and will continue to evolve.
While these features are nice, our focus is action to raise awareness of childhood cancer. One initiative is the Petition to Raise Awareness of Childhood Cancer . It has over 16,000 signatures and will be used to hopefully leverage a network TV special solely on childhood cancer or a similar high profile project. Other ideas and action items are presented daily in our ongoing effort to raise awareness.
The PAC2 is an amazing place to share information and find support.
Please visit and join us at http://curechildhoodcancer.ning.com.
PS Hope to see you in the PAC2. If you make it there please find me a say hi. Just search members for Diane Bishop
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