p-test
Not that kind of p test.
We had our meeting with the doctor this weekend and got more info. Stefan had to get a blood test done to see if he has a 1p chromosome deletion. If he does have this deletion - we will be going with chemo. Chemo is very effective for people with this 1p deletion. About 25% of people will have this deletion. If Stefan doesn't have this deletion - we'll be going with radiation. Preference is for Chemo, just because it would be more effective (with the 1p deletion) and doesn't have the nasty long term side effects of radiation. But - this new tumour (oligodendrocglioma) is also sensitive to radiation - so we are still hopeful about treatment either way.
The Dr. is leaning towards treatment rather then the 'wait and see' approach just because of the size that the tumour was and the effects it was having on Stefan (with the pressure on his eyes and word finding problems).
Our walking girl
Charlotte walked today!!!! Over the past month she has been taking more and more steps, but today I would say she officially walked. We were at Safeway and she found a helium balloon, and while holding on to her balloon she walked! She did so well - and we were very proud of our little girl! Here is a video - she had already walked a marathon at this point and was getting pretty tired - but you get the idea!
superhero
Saturday, March 26, 2011
Monday, March 21, 2011
Results
The pathology results are in. We just got the initial information on the phone, will get more once we meet with the doctor.
Turns out the initial diagnoses of an astrocytoma tumour was incorrect. This just goes to show how the biopsy of a small sample can not be indicative of the actual tumour.
The tumour is actually a low grade oligodendroglioma. We are happy with this (although now I have to work on pronouncing this new name!). With both the fact of being low grade - and the change from astrocytoma to oligodendroglioma. Although oligodendroglioma's are rarer, they also tend to be more responsive to chemo and radiation! (only 5% of glioma brain tumours are oligodendroglioma's as opposed to 54% being low grade astrocytoma's)
I won't get into technical terms just yet until I know more - but there are characteristics of the tumour which will indicate if the tumour will be more sensitive to treatment - hopefully we'll find all that out soon.
We are renewed with optimism for our next steps.
I have some overdue thanks for the past few weeks:
Turns out the initial diagnoses of an astrocytoma tumour was incorrect. This just goes to show how the biopsy of a small sample can not be indicative of the actual tumour.
The tumour is actually a low grade oligodendroglioma. We are happy with this (although now I have to work on pronouncing this new name!). With both the fact of being low grade - and the change from astrocytoma to oligodendroglioma. Although oligodendroglioma's are rarer, they also tend to be more responsive to chemo and radiation! (only 5% of glioma brain tumours are oligodendroglioma's as opposed to 54% being low grade astrocytoma's)
I won't get into technical terms just yet until I know more - but there are characteristics of the tumour which will indicate if the tumour will be more sensitive to treatment - hopefully we'll find all that out soon.
We are renewed with optimism for our next steps.
I have some overdue thanks for the past few weeks:
- Thanks to Dana for the use of her apartment and parking spot while Stefan was at VGH
- Thanks to Rebecca and our parents for helping out with Charlotte (particularly Stefan's mom for helping 'watch' Stefan since he's been home)
- Thanks to my work for the m&m gift card
- Thanks to Stefan's fellow middle school vice-principals for the spa gift card (very much looking forward to that!)
- Thanks for all the calls and email from everyone letting us know they are thinking of us
Sunday, March 20, 2011
Sunny Sunday
I imagine everyone is enjoying the sunny weather as much as us!
Still no word on the pathology report. Should hear this week.
We had a good week. I went back to work, while Stefan's mom came and kept him company! Stefan is doing as well as can be expected after 2 brain surgeries in 3 months. I think things will be better once we have the results and the next steps in 'the plan'.
We had a good weekend, had friends in town from Whitehorse for the night Saturday. A friend for Charlotte, and once the kids were in bed - some cards and laughs for the adults. Laughing can definitely be therapeutic - and we needed a night of laughs! Some pics of our happy girl on this sunny weekend!
Still no word on the pathology report. Should hear this week.
We had a good week. I went back to work, while Stefan's mom came and kept him company! Stefan is doing as well as can be expected after 2 brain surgeries in 3 months. I think things will be better once we have the results and the next steps in 'the plan'.
We had a good weekend, had friends in town from Whitehorse for the night Saturday. A friend for Charlotte, and once the kids were in bed - some cards and laughs for the adults. Laughing can definitely be therapeutic - and we needed a night of laughs! Some pics of our happy girl on this sunny weekend!
Saturday, March 12, 2011
Stefan is home!
Stefan came home today! Very exciting. Very nice to not have to split my time between the hospital and home. Charlotte is very happy to have Daddy home! We are all tired.
We couldn't have asked for a better turn out from the surgery. Stefan is still tired often, but recovering well. We spoke to the surgeon - and he said they removed 98% of what could be seen in the MRI! Yes - 98%! The neurology students sat with us and showed us the before surgery MRI vs. the after surgery cat scan. No more mushroom coming out of Stefan's head! He now has a titaniam mesh covering the previous hole.
We are now waiting on the pathology results - could be anywhere from 1 to 2 weeks for that. Next steps will be dependent on the results. If it's just a pure grade 2 - it may be a 'wait and see' or radiation. If it's a grade 3 (surgeons inclincation based on the size of the tumour) - that could be mean radiation and chemo.
We are still holding off on visitors - thanks for understanding our need for rest and family time! Will update again soon!
We couldn't have asked for a better turn out from the surgery. Stefan is still tired often, but recovering well. We spoke to the surgeon - and he said they removed 98% of what could be seen in the MRI! Yes - 98%! The neurology students sat with us and showed us the before surgery MRI vs. the after surgery cat scan. No more mushroom coming out of Stefan's head! He now has a titaniam mesh covering the previous hole.
We are now waiting on the pathology results - could be anywhere from 1 to 2 weeks for that. Next steps will be dependent on the results. If it's just a pure grade 2 - it may be a 'wait and see' or radiation. If it's a grade 3 (surgeons inclincation based on the size of the tumour) - that could be mean radiation and chemo.
We are still holding off on visitors - thanks for understanding our need for rest and family time! Will update again soon!
Tuesday, March 8, 2011
Surgery went well
We can all breathe now! Stefan went into surgery just before 10 am, and was out just after 2:30. We had been told the surgery was expected to be 4 hours, so waiting for my phone to ring from 2 to 2:30 was excruciating.
I've been told the surgery went well, not sure yet how much was removed, will find out when we see the surgeon.
Stefan is responding well! Moving all his arms and legs and answering questions correctly. He knew who we were (me, his parents and sister). When I first went in to see him, he said he loved me, and my heart melted.
We are letting him rest as he is quite out of it. Will update again soon. Thanks for all the prayers, positive thoughts and healing energy!
I've been told the surgery went well, not sure yet how much was removed, will find out when we see the surgeon.
Stefan is responding well! Moving all his arms and legs and answering questions correctly. He knew who we were (me, his parents and sister). When I first went in to see him, he said he loved me, and my heart melted.
We are letting him rest as he is quite out of it. Will update again soon. Thanks for all the prayers, positive thoughts and healing energy!
Sunday, March 6, 2011
Mixed Emotions
Lucky
Stefan is feeling pretty lucky - lucky that he got in for surgery Tuesday as opposed to waiting until April (probably due to a cancellation somewhere). Lucky he got in for an MRI Friday when he was 401st on the list - again - right place at the right time. (He had to get both a cat scan and MRI done Friday in preparation for the surgery). And of course lucky for the MRI on December 17th that led us to this fight.
Stefan's horoscope on Thursday when we met Dr. T:
"You might encounter someone powerful today who is determined to improve you or improve what you're doing."
Scared
We are all a bit scared. On December 17th - everything moved so quickly it was a blur. Having had a few days to prep ourselves for surgery - it's been such a roller coaster of emotions. We went to church today. While Stefan and I had somewhat religious upbringings, and we are both spiritual - the only other time we had been was to meet our minister that married us. It was a good (for me emotional) experience - and we plan to go again soon.
Thankful
And of course, we're thankful. Thankful for the Canadian medical system, proving it works when you need it too. The processes we have been through since December 17th really have been quick. The doctors, nurses and staff have been fantastic. We have a great family and group of friends behind us.
I will probably not update again until after surgery. We do not expect Stefan to be as 'peppy' as he was after the first surgery due to the extent of this surgery. I'm asking for no visitors for the first couple days (just family and a few close friends). Please send us lots of positive thoughts!
Stefan is feeling pretty lucky - lucky that he got in for surgery Tuesday as opposed to waiting until April (probably due to a cancellation somewhere). Lucky he got in for an MRI Friday when he was 401st on the list - again - right place at the right time. (He had to get both a cat scan and MRI done Friday in preparation for the surgery). And of course lucky for the MRI on December 17th that led us to this fight.
Stefan's horoscope on Thursday when we met Dr. T:
"You might encounter someone powerful today who is determined to improve you or improve what you're doing."
Scared
We are all a bit scared. On December 17th - everything moved so quickly it was a blur. Having had a few days to prep ourselves for surgery - it's been such a roller coaster of emotions. We went to church today. While Stefan and I had somewhat religious upbringings, and we are both spiritual - the only other time we had been was to meet our minister that married us. It was a good (for me emotional) experience - and we plan to go again soon.
Thankful
And of course, we're thankful. Thankful for the Canadian medical system, proving it works when you need it too. The processes we have been through since December 17th really have been quick. The doctors, nurses and staff have been fantastic. We have a great family and group of friends behind us.
I will probably not update again until after surgery. We do not expect Stefan to be as 'peppy' as he was after the first surgery due to the extent of this surgery. I'm asking for no visitors for the first couple days (just family and a few close friends). Please send us lots of positive thoughts!
Thursday, March 3, 2011
Here we go again
Things have moved rapidly the last few days. The result being Stefan is going for surgery Tuesday - yes - this Tuesday.
We met with the 3rd surgeon today, but the the last couple days have been a bit of a whirlwind.
Tuesday
Stefan went into work Tuesday - he was tired of sitting at home - so just went and was there a full 6 hours before his watchful secretaries (thanks ladies!) told him he looked tired and urged him to head home! But - while he was there - he got a call from Vancouver General Hospital (VGH) saying his surgery was booked for March 8th. This was quite a shock for Stefan since we hadn't yet officially decided on surgery - and hadn't even met with the VGH surgeon yet. It was also reassuring to Stefan that things were starting to move after 70 days post diagnoses.
Wednesday
Started with our support group in the morning. I find support group helpful - but also draining emotionally. It was a good day for us though - Stefan got to talk about his frustrations with the different surgery opinions and get helpful feedback. We then went for lunch, and then went to VGH to the pre-admissions center. This was a 2 hour appointment where they basically prep you for surgery. We ended the day with our oncologist - wanted to give him a heads up about the 3rd surgeon we were meeting with and potential for a Tuesday surgery.
Thursday
That brings us to today. We met with the 3rd surgeon - Dr. T. He was great. Basically summed up what Dr. L had said. The overall consensus - from both surgeons, the oncologist and others was we couldn't go wrong with Dr. L or Dr. T. Either way - we would get top notch care. So - our decision came down to timing. Dr. T already had us booked in for Tuesday - likely we wouldn't get in with Dr. L until April (this comes down to just the # of operating beds at Royal Columbia Hospital (RCH) vs. VGH and that RCH is a trauma center, so other surgeries get bumped). So......we are going in for surgery Tuesday at VGH. (I know I always say 'we' when it's really just Stefan - but hey - we're a team).
We are of course nervous - but know it's the right decision.
Dr. T said his instinct says that the tumour could be grade 3. He said grade 2 tumours don't usually present like Stefan's. We'll have to see what the pathology from surgery says - which grade it is could change the treatment plan post surgery.
Tomorrow - Stefan goes for his cat scan (used during surgery) - and he will confirm with Dr. T that we are going ahead with surgery.
We met with the 3rd surgeon today, but the the last couple days have been a bit of a whirlwind.
Tuesday
Stefan went into work Tuesday - he was tired of sitting at home - so just went and was there a full 6 hours before his watchful secretaries (thanks ladies!) told him he looked tired and urged him to head home! But - while he was there - he got a call from Vancouver General Hospital (VGH) saying his surgery was booked for March 8th. This was quite a shock for Stefan since we hadn't yet officially decided on surgery - and hadn't even met with the VGH surgeon yet. It was also reassuring to Stefan that things were starting to move after 70 days post diagnoses.
Wednesday
Started with our support group in the morning. I find support group helpful - but also draining emotionally. It was a good day for us though - Stefan got to talk about his frustrations with the different surgery opinions and get helpful feedback. We then went for lunch, and then went to VGH to the pre-admissions center. This was a 2 hour appointment where they basically prep you for surgery. We ended the day with our oncologist - wanted to give him a heads up about the 3rd surgeon we were meeting with and potential for a Tuesday surgery.
Thursday
That brings us to today. We met with the 3rd surgeon - Dr. T. He was great. Basically summed up what Dr. L had said. The overall consensus - from both surgeons, the oncologist and others was we couldn't go wrong with Dr. L or Dr. T. Either way - we would get top notch care. So - our decision came down to timing. Dr. T already had us booked in for Tuesday - likely we wouldn't get in with Dr. L until April (this comes down to just the # of operating beds at Royal Columbia Hospital (RCH) vs. VGH and that RCH is a trauma center, so other surgeries get bumped). So......we are going in for surgery Tuesday at VGH. (I know I always say 'we' when it's really just Stefan - but hey - we're a team).
We are of course nervous - but know it's the right decision.
Dr. T said his instinct says that the tumour could be grade 3. He said grade 2 tumours don't usually present like Stefan's. We'll have to see what the pathology from surgery says - which grade it is could change the treatment plan post surgery.
Tomorrow - Stefan goes for his cat scan (used during surgery) - and he will confirm with Dr. T that we are going ahead with surgery.
Tuesday, March 1, 2011
our sense of humour
Since the diagnoses - Stefan and I have made many brain tumour jokes - it comes with the territory. I realize though, we have probably made some friends/doctors uncomfortable with our sense of humour. But - it's how we deal.
An example of said sense of humour:
After our appointment with Dr. C - where the doctor told Stefan he would be a vegetable if he did more surgery:
me: Honey - what kind of vegetable do you think you would be?
brain tumour man: a beet, or maybe broccoli
At our appointment with Dr. L - where the doctor mentioned a 5-10% risk of some speech impairment:
me: that's okay - I really only married him for his looks
It's okay if you're not laughing. Stefan and I are!
An example of said sense of humour:
After our appointment with Dr. C - where the doctor told Stefan he would be a vegetable if he did more surgery:
me: Honey - what kind of vegetable do you think you would be?
brain tumour man: a beet, or maybe broccoli
At our appointment with Dr. L - where the doctor mentioned a 5-10% risk of some speech impairment:
me: that's okay - I really only married him for his looks
It's okay if you're not laughing. Stefan and I are!
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