The other day I posted about the Spring Sprint and how I was volunteering for it. Well, this week I found myself in the position of entertainment coordinator. How? I don't really know. But I'm excited none the less.
After some depressing days of thinking "I may only have Stefan for another 10 years", I came to this realization:
- They have come leaps and bounds in the last 10 years with brain tumour treatment
- If they can stop this tumour from growing for 5-10 years, who knows what kind of treatment will be available for Stefan then
Based on that - I have a new excitement within me for this Spring Sprint. Helping out - I feel like I can have a bit of control of this situation. So yes, I may have bitten off more then I can chew....but - I can have hope again!
superhero
Thursday, April 28, 2011
Wednesday, April 27, 2011
Wednesday of Few Words - The Mask
My girlfriend features a wordless Wednesday (or sometimes a Wednesday of few words) on her adorable blog, lilahbility. This is my take on it.
This lovely mask is to be worn for each of the 28 treatments. It's job is to keep Stefan's head as still as possible so the radiation just effects the tumour, and not his healthy brain tissue. Bonus: we get to take it home when we are done!
This lovely mask is to be worn for each of the 28 treatments. It's job is to keep Stefan's head as still as possible so the radiation just effects the tumour, and not his healthy brain tissue. Bonus: we get to take it home when we are done!
Wednesday, April 20, 2011
Dates are set
We received the call today - radiation begins May 6th. On April 27th, Stefan goes in to have his mask fitted (every superhero needs a mask), gets his cat scan, and more info on radiation.
We met with the chemo doctor today. Stefan's pre-surgery tumour was the size of a mandarin orange, we didn't get the post-surgery fruit, but it was confirmed they removed about 98% of the tumour. Stefan kind of lucked out again as they called him as he was on his way to the cancer agency to say they wanted to book him in for an MRI this afternoon - he managed to squeeze it in before the appointment with the Dr.
The meeting was pretty straight forward. Didn't go into a lot of detail since we won't be doing Chemo (Stefan's genetics weren't working in our favour were the Dr.s words). But we did get confirmation that radiation now rather then later is the way to go.
Dr.'s comments:
If you think you can help some days with taking Stefan to radiation, please email me at taleen.lageston@gmail.com
Hope everyone has a great Easter! We will be enjoying it with our 'walking everywhere' little girl!
We met with the chemo doctor today. Stefan's pre-surgery tumour was the size of a mandarin orange, we didn't get the post-surgery fruit, but it was confirmed they removed about 98% of the tumour. Stefan kind of lucked out again as they called him as he was on his way to the cancer agency to say they wanted to book him in for an MRI this afternoon - he managed to squeeze it in before the appointment with the Dr.
The meeting was pretty straight forward. Didn't go into a lot of detail since we won't be doing Chemo (Stefan's genetics weren't working in our favour were the Dr.s words). But we did get confirmation that radiation now rather then later is the way to go.
Dr.'s comments:
- there is nothing worse then a growing tumour in the brain
- where it is situated in the brain, risk of losing language and memory with tumour growth
- goal of radiation is to stop growth for as long as possible
- eventually - the tumour will start to grow again - we don't know when - but just hope that it's not for a long time
- if/when it does start to grow again, we can try chemo
- main short term effect is fatigue
- speaking to members within our support group who have had radiation, they were tired for a full year following treatment (ie. didn't return to work for a year), and at their peak of fatigue were sleeping 22 hours a day - other side effects include:
-headaches, nausea, vomiting
-hair loss
-short term memory loss - the Dr. didn't get to into the long term effects, we are aware of some of them.
- the long term effects don't usually impact someone until 5, 10, 20 years after radiation (sobering reality is that they are focusing on getting Stefan there, hence why I don't think they go into too much detail on long term effects)
- radiation will take place 5 days a week for 5 and a half weeks, he should be in and out of the cancer clinic within 40 minutes
If you think you can help some days with taking Stefan to radiation, please email me at taleen.lageston@gmail.com
Hope everyone has a great Easter! We will be enjoying it with our 'walking everywhere' little girl!
Monday, April 11, 2011
p-test results
We got the results of the p-test. While it wasn't what we were hoping for, it was what was expected. Stefan is 1p/19q intact. This means it is not as likely to be chemotherapy responsive. So - sounds like we are headed towards radiation. Our Dr. has already put the requisitions in for the next MRI and radiation - so I imagine we could be starting within a couple weeks. We still meet with the chemo expert Dr. on the 20th. Our Dr. suggested this could still be helpful, I think because he is a neurologist, and also familiar with this type of tumour.
This chemo expert Dr. likes to use fruit comparisons to the tumour (ie. size of a grapefruit vs. size of grapes). At our support group, we can tell who has this Dr. as when they describe their tumour - it's always a fruit. Guess we'll find out our fruit on the 20th, both the before surgery and post surgery fruits.
This chemo expert Dr. likes to use fruit comparisons to the tumour (ie. size of a grapefruit vs. size of grapes). At our support group, we can tell who has this Dr. as when they describe their tumour - it's always a fruit. Guess we'll find out our fruit on the 20th, both the before surgery and post surgery fruits.
Thursday, April 7, 2011
Spring Sprint
I have signed up to volunteer and be a team captain for the Spring Sprint.
What is it? Here are the details:
What: A 5km run or walk in support of those affected by a brain tumour
Where: Burnaby Lake East - Rowing Pavilion
When: Sunday May 29th - registration is at 10 am
Website: http://www.springsprint.ca/
Our team is Team Lageston. I understand people out there support a number of great causes. I have a group of girlfriends who are currently raising money towards their daunting goal of $31,400 with ride to conquer cancer.
But - I thought this would be a great way to show support for our Superhero Stefan! We are hoping Stefan will be in his next stage of treatment by then - but he plans to participate in the walk with Superchuck!
So - come on out - you can raise $10 or $100 - whatever amount you are comfortable with! Come join Team Lageston!
Who's in????
What is it? Here are the details:
What: A 5km run or walk in support of those affected by a brain tumour
Where: Burnaby Lake East - Rowing Pavilion
When: Sunday May 29th - registration is at 10 am
Website: http://www.springsprint.ca/
Our team is Team Lageston. I understand people out there support a number of great causes. I have a group of girlfriends who are currently raising money towards their daunting goal of $31,400 with ride to conquer cancer.
But - I thought this would be a great way to show support for our Superhero Stefan! We are hoping Stefan will be in his next stage of treatment by then - but he plans to participate in the walk with Superchuck!
So - come on out - you can raise $10 or $100 - whatever amount you are comfortable with! Come join Team Lageston!
Who's in????
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