Stefan Update

Hi Everyone,

I've kept meaning to update the blog, but things change each day, and I just found it easier to do a quick update on facebook whenever I had a chance.

Here is a quick run down on what has been happening since August 11th:

We had a very quickly planned get together at Train Wreck Brewing on August 28th so people could give Stefan some pre-surgery love.  Sorry for those who didn't get an invite - it was just thrown up on Facebook fairly last minute and Stefan didn't want anything too crazy.  We had an amazing turnout considering the short notice (word got around quickly!).  It was a wonderful reminder of just how loved Stefan is!

Surgery

Monday August 31st: Surgery Day.  

Surgery started at 7:55 am and ended at 12:45 pm.  I received a call from the surgeon just after surgery and he said he managed to get a good resection of the original tumour.  Stefan had taken a medicine the night before (our brain surgeon actually called Stefan at 11 pm the night before to walk him through taking it), that would essentially make the tumour "glow".  The medicine was very helpful during the surgery.  The surgeon said he spent quite a bit of time trying to get to the cyst, but unfortunately wasn't successful.  When Stefan got out of surgery, he was doing pretty well.

Tuesday September 1st: 

Stefan was initially doing well.  He was able to walk and eat, but by late afternoon things seemed to change.  He became very tired and was in pain,  having difficulty finding words and experiencing some vision issues.  The doctor saw him around 6 pm and didn't seem concerned.  He reiterated that the results from surgery were good and that they may be able to try surgery again to get to the cyst on a future date.  Since the doctor had seen Stefan and wasn't worried with his afternoon symptoms, and the nurses reiterated that what we were seeing could be quite normal following brain surgery, I went home to the kids that night.

Wednesday September 2nd: 

When I got to the hospital, I could tell things were off.  I found the nurse, who told me that Stefan had been sent for an urgent CT scan.  Thankfully  the CT scan didn't show anything abnormal.  During the night, he had almost fallen in the bathroom.  That day, Stefan was barely talking, couldn't eat (I spoon fed him what I could) and couldn't walk.  They sent him for an MRI late in the afternoon.  At that point I decided to stay the night at the hospital and make sure someone was with him when I couldn't be. 

 

Thursday September 3rd: 

By Thursday Stefan was doing better.  Physio came by, and he managed to walk with a walker and support.  He was also managing to eat again.  The doctor came by with an update from the MRI.  The scan confirmed there was nothing abnormal and showed that some of the fluid from the cyst had come out.  There was some air in the brain following surgery, which was believed to be causing the confusion and balance issues.  We were told this would subside with time as the air would gradually get absorbed by the body.

The next few days continued to bring improvement, and we were able to take him home on the Saturday (September 5th).

Once home, we did have some issues with his wound leaking.  (Similar to the last surgery).  We did have to go back to the surgeon for some additional stitches.  This didn't fully stop the leaking, but it has since stopped.  Stefan was originally supposed to get his staples and stitches out on October 2nd, but this has now been moved to October 19th to be conservative.

Chemo

And now, Stefan is set to start chemo, Etoposide, tomorrow, October 5th.  This is an oral chemo, that he will take daily for three weeks, followed by a week off.  The current plan is to be on this for the next year and then re-evaluate.  The hope is that it will stabilize the tumour.  

How Stefan is Doing

Stefan is doing okay.  He is still pretty fatigued and we are continuing to slowly wean him off the dexamethasone (steroid).  He has some good days.  We did make it out to the Port Moody Terry Fox Run, and he walked the 2km.  

I came across this recently and felt like it captured so much of what life is like for Stefan right now.  Recovery isn't always linear, and some of the hardest parts aren't necessarily the things you can see.

He also had an EEG done this week to see if they can confirm any seizure activity. 

I'm continuing to work part time for the next little while, which feels like the right balance so I can continue to take care of my family and myself.  

We have been receiving amazing support from friends and family.  We feel blessed for all the positive healing energy sent our way and continue to choose to be hopeful and optimistic.

An Update on Stefan

Hi family and friends…

I’m so sorry for the long hiatus. It was good to ignore this blog for a few years.

While things have been going on in tumour world, we haven’t been very public about it. Stefan has been working, and now we have teenagers, so life has been busy and, for a while, things were relatively stable.

Unfortunately, we are now at a stage where a return to work looks very unlikely for Stefan, and we are needing the support and love of our family and friends.

Just over a year ago, we were told that Stefan’s tumour was growing at a pace where it was time to take action. He started on a low dose of temozolomide in the fall—the same chemotherapy he had in 2020.

After six months, though, it became evident that the temozolomide wasn’t being effective. In June, Stefan moved on to a new chemotherapy, lomustine.

June was a very busy month for us. We were moving Stefan’s mother from the Sunshine Coast, but Stefan insisted on finishing the school year. I had convinced him to take a trip to England to see family, and in an effort to make that happen, we decided he would go with our son, Nathan, just the two of them, to help keep the costs down.

We had noticed that Stefan wasn’t quite himself in early July. At the time, we chalked it up to the new chemotherapy and the busyness of June.

During their trip in England, though, Stefan had a significant cognitive decline, which was incredibly scary. Thankfully, Nathan managed to get them home safely, and Stefan was started on steroids right away.

After three days on steroids, Stefan returned to normal.

He doesn’t remember much from that time. He had significant difficulty with his memory and finding words, and he was extremely low energy.

We now affectionately—and somewhat grimly—call that version of him “England Trip Stefan.”

In speaking with the oncology team, there was agreement that these symptoms likely meant tumour progression. He was fast-tracked for another MRI, which he had on August 6th.

Yesterday, we met with both the oncologist and the neurosurgeon.

The scan showed evidence of changes that explained the cognitive changes we’d been seeing. The original tumour has continued to grow slowly. In addition, there is a new cyst, and this cyst has been growing much faster.

The walls of the cyst are tumour, and it is filled with fluid. The fluid can expand much more quickly than the tumour itself, which means the cyst can cause problems relatively quickly.

Unfortunately, the cyst is in an area where there are more limitations on what can safely be done.

Both doctors agreed that the next step isn’t black and white.

One option is surgery. If we decide not to do surgery, that isn’t necessarily a decision we can change later. Essentially, it’s now or never.  This would be Stefan's last surgery.

The neurosurgeon believes they could remove some of the original tumour. They wouldn’t be able to remove the cyst itself, but they could potentially drain it, possibly placing a drain that would allow it to be drained again in the future.

The surgery would also provide an opportunity to have a personalized oncogenomics study done on the tumour. This could potentially give us more information to help guide future treatment decisions.

But there are some very significant risks.

Because of where the tumour is, surgery carries an increased risk of speech and memory loss. In other words, there is a risk that Stefan could permanently become “England Trip Stefan.”

And even if the surgery goes well, it wouldn’t remove the part of the tumour that is currently behaving the worst. It might leave us with less tumour and some additional information that could help with treatment planning—but it might not.

The doctors also don’t have much confidence that the personalized oncogenomics testing would actually lead to additional treatment options.

Whether Stefan has surgery or not, there are two additional chemotherapy options available. Unfortunately, we were told that they don’t think either is likely to work particularly well.

We’ve also been told in the past that further radiation wasn’t an option because of the amount of radiation Stefan has already received. Yesterday, however, we were told that in select patients, radiation can sometimes be used again, and that it would be worth having another discussion about whether Stefan might be one of those patients.

When I summarized everything back to the neurosurgeon, the gist of it was:

“So we can do surgery, with the risk that Stefan could be like ‘England Trip Stefan’ afterward, and get a chance at some additional information that might help with treatment—but probably won’t extend his life by much…

Or we don’t do surgery, and either way, there is a risk that ‘England Trip Stefan’ eventually returns as the tumour continues to grow…

And there really aren’t any other treatment options that look particularly promising.”

All in all, it sucks.

Stefan is leaning toward surgery. At least it gives us something to hope for, and I think we need that right now.

Once we give the confirmation, the surgery will likely happen within 2–3 weeks.

So, that’s where we are.

We don’t know exactly what the next few weeks, months, or years will look like. We don’t know what the surgery will accomplish, or what options might come afterward.

But we do know that we are going to need our people.

We know that everyone is going to have questions, and we are happy to share what we can.  If you have questions, please feel free to email me at taleen.lageston@gmail.com.  I may not have all the answers, but I will do my best to keep everyone updated here.  

We also know that many of you will have ideas, suggestions, stories about treatments that have worked for someone you know, or recommendations for things we should try.  We truly appreciate that these suggestions come from a place of love.  However, at this point, we would really ask that you refrain from offering treatment suggestions or medical advise.  We are working closely with Stefan's oncology and neurosurgery teams, and we need to be able to focus our energy on the decisions in front of us.

What we need most right now is your love, support, encouragement, and understanding.

Please send love, prayers, positive thoughts, healing energy—whatever you believe in—our way.

We appreciate every bit of it.  💗

10 Years

Wow.  This day snuck up on me......even though I had booked the day off, I hadn't clued into the fact that this was Stefan's 10 year cancerversary.  The day has certainly brought back some memories of 10 years ago....and that call from Stefan saying he had a brain tumour that shook our world.  I'm grateful for every single day of those 10 years and keep praying for more.

I haven't blogged in a while - what do you say in a year like this one, when everyone is struggling with something.  Seems like our gripes pale in comparison to many....so we just hibernate in our bubble, and try to keep positive.

Stefan is in the good phase of his chemo cycle at the moment, (and luckily for Christmas) he has about 3 good weeks to the one bad.  During the good weeks, I can pretend that everything is normal.  For about 7-10 days of each month, while Stefan is taking his pills and the few days after, we can't pretend.  Stefan manages pretty well.  Instead of morning runs that week, he does his walks, and he may actually take some time to have a nap or watch a show in the afternoon.  Swallowing the pills is a challenge for him, and gets a little harder each month.  These are the hard days as we are reminded that Stefan is fighting something pretty bad.  He only has 4 more cycles to go (assuming all is okay as things go along).  He has his MRI roughly every two months, and we have been told that everything looks stable.

I have been quite busy with work, which is perhaps a hidden blessing as busy work means I can't stress over brain tumours.  Being at home has been beneficial since I can sneak extra cuddles in at lunch.  COVID stresses us out I'm sure as much as everyone else.  I put serious thought into moving us up to the Yukon for the school year to see if we could find a solution that would keep Stefan safe and let the kids go to school.  It obviously didn't pan out, and we felt the best option was to keep the kids home.  They continue to be supported by two amazing teachers, and of course Stefan.  They keep a pretty regular schedule with their hours the same as the school day.  I know it's been a struggle for Charlotte as this would have been her first year at middle school, a time when friends and meeting new people is so important.  Thank goodness for some solid friend connections, facetime and roblox.  

Ultimately, I think this COVID/Chemo duo has been most challenging for our family, as they haven't been able to visit/support us this year. and vice versa  But, we are doing okay.  I feel a bit selfish being able to covet Stefan to myself this year.....but due to COVID, I don't even have to feel guilty about it.  We would usually be so busy in December hosting parties and family dinners....I miss our family and friends very much - but taking the opportunity to enjoy the quiet, kids and Stefan.  

Today - we managed to get in a family walk in our beautiful 'back yard', and we toasted 'surviving 10 years' over some take out tonight.  I didn't do Christmas cards this year - so don't be surprised if I ring you up to catch up instead!  I hope everyone is staying safe and healthy.  We look forward to hopefully seeing many of you sometime in 2021.