at some of these pictures, it's hard to believe the year we've had. Being with Daniel every day, it's hard for me sometimes to see small changes. Like his hair. When it all fell out, he didn't look that different to me. But when I look at pictures of him from September, I am shocked to see that he was completely bald. Yet just a few months later, his hair has grown back, and to look at him you would never guess anything was wrong.
Daniel's counts have been great for a month now, he is strong and healthy and enjoying terrorizing his big sister. He's had a great start to school, despite several days missed due to colds or low counts (but thankfully nothing more serious than that), thanks to a wonderful teacher. He loves doing artwork, dancing and is starting to read.
We are thankful for how well this year has turned out, thankful for the love and support of our family and friends, and very hopeful that 2008 will be a much better year.
Monday, January 7, 2008
Friday, October 26, 2007
Long Term Maintenance
I am happy to report that as of Sept 14th, 2007, Daniel has entered the long-term maintenance phase of his treatment protocol. This means he gets treatment only once a month, with checkup & bloodwork every 2 weeks in between.
Life has gotten very much back to normal; Daniel is enjoying school and looking forward to Halloween (dressing up as a power ranger).
The docs have been increasing the dosages of his meds since the start of this phase. Basically, they want to give him as much as his body can handle without causing his counts to crash. So every two weeks they have been upping his doses, and his counts have slowly come down, and today's results show that his counts are now too low - he is neutropenic. Which was expected - basically he has hit the maximum level of medication that his body can tolerate. So now we stop all meds for one week, keep him home from school so he doesn't catch any infection, and check his bloodwork again in one week.
I am confident that his counts will be fine by then. We then back up to the last dosage he was able to tolerate, and stick with that.
But there is nothing wrong, all is well, lower counts were fully expected and totally normal in his situation.
Most importantly, he is eating and sleeping well, and is a happy little guy, adjusting to the hectic pace of kindergarten life. All is well in our world.
Life has gotten very much back to normal; Daniel is enjoying school and looking forward to Halloween (dressing up as a power ranger).
The docs have been increasing the dosages of his meds since the start of this phase. Basically, they want to give him as much as his body can handle without causing his counts to crash. So every two weeks they have been upping his doses, and his counts have slowly come down, and today's results show that his counts are now too low - he is neutropenic. Which was expected - basically he has hit the maximum level of medication that his body can tolerate. So now we stop all meds for one week, keep him home from school so he doesn't catch any infection, and check his bloodwork again in one week.
I am confident that his counts will be fine by then. We then back up to the last dosage he was able to tolerate, and stick with that.
But there is nothing wrong, all is well, lower counts were fully expected and totally normal in his situation.
Most importantly, he is eating and sleeping well, and is a happy little guy, adjusting to the hectic pace of kindergarten life. All is well in our world.
Wednesday, September 19, 2007
Monday, September 17, 2007
NOTHING BUT GOOD NEWS
We are thrilled to report that as of this past Friday, September 14th, Daniel has entered the Long Term Maintenance portion of his treatment protocol. There will still be chemo treatments, but once every 4 weeks, with a checkup and bloodwork in between, so we'll see the doctor once every 2 weeks, but that's much less than before. The rest is all meds to be taken at home, and is very manageable.
Daniel's bloodwork last week was great, about the best it's been in months, with everything back within normal ranges or just a hair below.
Daniel is feeling great, and his hair (which he had lost completely during this last phase) is growing back rapidly.
We no longer have to stay in the house all the time; Daniel has been out for dinner twice and to a Jays game in just the last week, and is cottage-bound this weekend.
He started school last week, and is enjoying JK so far (even though he can't tell me what they are learning, or even the names of any other kids in his class!).
I have returned to work, and life is back to "normal". Happily, we were a rather abnormal family to begin with, so I guess "normal" is subjective. But we'll take it.
Daniel's bloodwork last week was great, about the best it's been in months, with everything back within normal ranges or just a hair below.
Daniel is feeling great, and his hair (which he had lost completely during this last phase) is growing back rapidly.
We no longer have to stay in the house all the time; Daniel has been out for dinner twice and to a Jays game in just the last week, and is cottage-bound this weekend.
He started school last week, and is enjoying JK so far (even though he can't tell me what they are learning, or even the names of any other kids in his class!).
I have returned to work, and life is back to "normal". Happily, we were a rather abnormal family to begin with, so I guess "normal" is subjective. But we'll take it.
Saturday, August 18, 2007
EVERYBODY DO THE HAPPY DANCE!!!
We are thrilled to say that the ugly Delayed Intensification phase is now behind us, and it is official: the worst is over, and Daniel is kicking butt.
Most kids end up in hospital at some point over this phase due to fever, infection, etc. BUT NOT DANIEL - he has had neither, and his counts are already on the way back up.
So now the last phase is Long Term Maintenance, which will be the next 2 1/2 years. We go in to the hospital every two weeks, alternately for chemo one time and then just bloodwork and a checkup the next time. Once every two weeks is a lot better than four times a week, and everything he gets from here on out he has had before with no difficulties and minimal side effects, so it is very manageable. We hope to start either next Friday (Aug 24th) or the Friday after that (Aug 31st).
All of which means that Daniel will be ready to start school on time, and I will go back to work the week after that, and life can return to (sort of) normal, not that we were a normal family before :)
But first, a well-deserved break for all four of us -- it's been a long six months!
Most kids end up in hospital at some point over this phase due to fever, infection, etc. BUT NOT DANIEL - he has had neither, and his counts are already on the way back up.
So now the last phase is Long Term Maintenance, which will be the next 2 1/2 years. We go in to the hospital every two weeks, alternately for chemo one time and then just bloodwork and a checkup the next time. Once every two weeks is a lot better than four times a week, and everything he gets from here on out he has had before with no difficulties and minimal side effects, so it is very manageable. We hope to start either next Friday (Aug 24th) or the Friday after that (Aug 31st).
All of which means that Daniel will be ready to start school on time, and I will go back to work the week after that, and life can return to (sort of) normal, not that we were a normal family before :)
But first, a well-deserved break for all four of us -- it's been a long six months!
Wednesday, August 1, 2007
YIPPEE!!!!!!!
GREAT NEWS - We're in the home stretch!!
Daniel's counts were good today, so we were able to start the last half of the last stage of intensive chemo...and after 9 1/2 hours at the hospital today, the worst day of this whole thing is now behind us!!
So now we plow right through the next two weeks with no stopping (3 more treatments this week, 4 more next week) and then a two week break, then we start long term maintenance, which takes us through spring 2010.
Daniel can start JK in Sept, I can return to work, and life can start to get back to normal, whatever that is!
Thanks everyone for keeping your fingers crossed (and toes, and anything else...)
Your love and support does more than you know to keep pushing us forward.
Plus now that the steroids are long gone, I have my baby back!!! No more grumpiness, fighting, screaming, mood swings -- just my happy, smiling, beautiful baby!
Daniel's counts were good today, so we were able to start the last half of the last stage of intensive chemo...and after 9 1/2 hours at the hospital today, the worst day of this whole thing is now behind us
So now we plow right through the next two weeks with no stopping (3 more treatments this week, 4 more next week) and then a two week break, then we start long term maintenance, which takes us through spring 2010.
Daniel can start JK in Sept, I can return to work, and life can start to get back to normal, whatever that is!
Thanks everyone for keeping your fingers crossed (and toes, and anything else...)
Your love and support does more than you know to keep pushing us forward.
Plus now that the steroids are long gone, I have my baby back!!! No more grumpiness, fighting, screaming, mood swings -- just my happy, smiling, beautiful baby!
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