I really did not want to be adding a blog post with bad
news….but that’s where we are.
We were told some unfortunate news from Stefan’s MRI in
November, and are now at a position where we are ready to share.
First off I would like to apologize to our friends and family – many
of you were suspicious when we cancelled our annual Christmas party on short
notice. I’m sorry we were evasive. We are in a slightly different world this time around with the kids being a bit older, and we wanted to ensure we were ready to tell them the news before letting others know.
Here is a little recap from when we first started this adventure a little over 9 years ago along with a summary of the recent news:
Here is a little recap from when we first started this adventure a little over 9 years ago along with a summary of the recent news:
Dec 2010: After several doctors appointments over an 18 month period for Stefan’s fatigue and (near the end) occasional loss/jumbling of words, Stefan receives an MRI at Burnaby Hospital. They discover an 8x5 cm tumour that has moved his brain stem 1 cm and rush him to emergency brain surgery at Royal Columbia. He recovers well and we are home for Christmas.
Jan 2010: We are told that the tumour is an Astrocytoma, grade 2. There is still significant bulk and it is recommended to do another surgery and then radiation.
March 2010: Stefan get’s his second surgery at Vancouver General Hospital, we are told 98% removed. He recovers well.
April 2010: We are told that the tumour is an Oligiodendroglioma, but he does not have the chromosome deletion that bodes well for chemo. Still told chemo can be an option down the line “when it grows again”.
May to June 2010: Stefan completes 5.5 weeks of radiation
March 2011 to July 2013: we pause on Stefan to make our way through Charlotte’s cancer. He continues with semi-annual MRI's.
October 2018: We are told another "no growth" MRI result and the decision is made to move from semi annual to annual MRI's.
Early November 2019: Stefan had his MRI in October 2019, and we met with our doctor in early November. They had not received the official report (backlog) but our doctor said when she looked at the scans, in her opinion they looked consistent with past ones. Without the official report, we did not do our usual celebratory facebook post but did silently rejoice.
November 20, 2019: Stefan receives a phone call at the end of the day getting the unfortunate news that: "His tumour is growing. While it was hard to see in comparing sequential images, when compared to 2 years go, there has been growth. It's 4x2 cm now." It was a call that was hard to take and hard to comprehend. Especially the size.
December 5, 2019: We review options with the Oncologist. We find out that Neurosurgeons can perhaps exaggerate. We hadn't actually seen images after his second surgery and radiation and were never really told the size. By the sounds of it, the tumour was about 2x1 cm after treatment. This made the new size make a bit more sense. (In hindsight, I think it was better living the last 8 years picturing it in our mind as a minuscule thing.) We are told that the tumour is now considered an Astrocytoma. (the World Health Organization changed the prognosis model in 2016). THe oncologist laid out our options: radiation again (don't recommend, 35% risk of something bad happening), surgery (5% risk), chemo (5% risk). His recommendation was to do another surgery to decrease the tumour size (chemo is more effective when there is less to deal with), and then do chemo. He said if we don't go with surgery, then he wants to start chemo ASAP. If he does go with surgery, he said it should be done within the next 6 months. Stefan is otherwise healthy (he has had zero symptoms) and could continue on as normal for the time being. That was a lot to digest and brew on over Christmas break.
January 17, 2020: Met with the neurosurgeon. This was one of the three neurosurgeons that we met with before Stefan's second surgery. Overall, we left this meeting feeling more positive then after the December meeting. We compared the recent images from the image 2 years ago, witnessing for the first time the actual large hold in my husbands brain (and you all thought we were joking about the half brain the last 8 years). We grasped onto the opinion of our surgeon that the images don't indicate it's transformed into a malignant tumour (aggressive tumours don't pick up dyes as easily) although we are cautious. (surgery will allow us to have a conclusive pathology done).
October 2018: We are told another "no growth" MRI result and the decision is made to move from semi annual to annual MRI's.
Early November 2019: Stefan had his MRI in October 2019, and we met with our doctor in early November. They had not received the official report (backlog) but our doctor said when she looked at the scans, in her opinion they looked consistent with past ones. Without the official report, we did not do our usual celebratory facebook post but did silently rejoice.
November 20, 2019: Stefan receives a phone call at the end of the day getting the unfortunate news that: "His tumour is growing. While it was hard to see in comparing sequential images, when compared to 2 years go, there has been growth. It's 4x2 cm now." It was a call that was hard to take and hard to comprehend. Especially the size.
December 5, 2019: We review options with the Oncologist. We find out that Neurosurgeons can perhaps exaggerate. We hadn't actually seen images after his second surgery and radiation and were never really told the size. By the sounds of it, the tumour was about 2x1 cm after treatment. This made the new size make a bit more sense. (In hindsight, I think it was better living the last 8 years picturing it in our mind as a minuscule thing.) We are told that the tumour is now considered an Astrocytoma. (the World Health Organization changed the prognosis model in 2016). THe oncologist laid out our options: radiation again (don't recommend, 35% risk of something bad happening), surgery (5% risk), chemo (5% risk). His recommendation was to do another surgery to decrease the tumour size (chemo is more effective when there is less to deal with), and then do chemo. He said if we don't go with surgery, then he wants to start chemo ASAP. If he does go with surgery, he said it should be done within the next 6 months. Stefan is otherwise healthy (he has had zero symptoms) and could continue on as normal for the time being. That was a lot to digest and brew on over Christmas break.
January 17, 2020: Met with the neurosurgeon. This was one of the three neurosurgeons that we met with before Stefan's second surgery. Overall, we left this meeting feeling more positive then after the December meeting. We compared the recent images from the image 2 years ago, witnessing for the first time the actual large hold in my husbands brain (and you all thought we were joking about the half brain the last 8 years). We grasped onto the opinion of our surgeon that the images don't indicate it's transformed into a malignant tumour (aggressive tumours don't pick up dyes as easily) although we are cautious. (surgery will allow us to have a conclusive pathology done).
| Scan from October 2017. |
| Scan from October 2019 (note the closing in of some of the black areas). |
March 3, 2020: surgery date
TBD: Start chemo. Chemo will be Temozolomide. It’s a less invasive oral chemo, 1 week on, 3 weeks off (1 month cycle). He will start with a 12 month cycle. Main side effects will be fatigue and nausea (he will receive additional medication to help with the nausea). Effects liver and kidney's so he will have to limit drinking. Also results in bone marrow suppression, ie. reduced white blood cells/platelets. Like Charlotte's treatment, a fever will likely mean a trip to the hospital. We will move to MRI's every 3 months.
I know that's a lot to digest....especially when it's been 9 years since we were on this roller coaster.
Overall, we are doing okay.
I would say one of the more difficult challenges this go around is that
our kids are older and more aware.
A large part of not
telling friends/family of what has been going on the last few months is
ensuring the kids were told first. We
weren’t ready to tell them until we knew what the next step was. Having had 9 years of preparing for these
moments has helped though and we continue to be thankful for every day. We are getting very close to the surgery date and I am reflecting on how we made it through this all last time and realizing that our support system was likely what held us together. You all helped us so much last time and we welcome all the love, prayers and support to get us through our next hurdle.
We did make it to Disneyland for a pre-surgery trip - so I will leave with you with a photo of our crew's battle pose. Our thoughts are with everyone who is struggling with something. Hug your loved ones.
We did make it to Disneyland for a pre-surgery trip - so I will leave with you with a photo of our crew's battle pose. Our thoughts are with everyone who is struggling with something. Hug your loved ones.
