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.