One Year

Wow - what a year!

As the 1 year anniversary of Stefan's brain tumour diagnoses drew near, both Stefan and I became quite reflective.  When I think back to what we have been through this year, I can't believe we survived.  There were some really rough days and they would always catch up with me.  And while Stefan monopolized most of our attention - with our now walking, dancing, talking little girl - we sometimes forget that she had her own adventure.

Some numbers from the year:

• 2 brain surgeries
• 5 MRI's and 6 cat scans
• 28 days of radiation
• 45 grey hairs and one box of hair dye
• 126 (give or take) sobbing drives to or from work
• 126 - the number of times it took me to realize I must stop listening to the country station on my way to work!
• countless meetings with every type of health care provider imaginable - neurosurgeons, oncologists, pediatric neurologist, endocrinologist, opthamologists (both for Stefan and Charlotte), pediatricians, physiotherapists, speech therapists, occupational therapists, obstetrician and of course our family doctor.
• It's been exactly 6 months since Stefan's treatment ended.

Lets not forget some great highlights:

• Our girl learned to walk
• We welcomed our handsome little boy
• We kept our sense of humour through a difficult time
• We got a chance to appreciate all the support we have from amazing family and friends!

When all is said and done, this year has shaped us like no other year.  While it was difficult, it has made us stronger, as individuals, and as a family.  We will be celebrating Stefan surviving 'one year with a brain tumour' tonight with a steak dinner!  Take the chance to enjoy your loved ones!  We are looking forward to a very boring 2012 - and wishing everyone a HEALTHY and happy holiday and new year!

Stefan's Message

Time has flown by.  It has been now one year exactly since the finding of the tumor and my first surgery.  It has been exactly 6 months since my last radiation treatment.  The last 6 months continued to be experiences of my/our family life changes and the start of finding more ways of meeting our lives' needs.  The support we experienced continued to be strong -  thanks again to our family and friends.  We hope that our friends who are experiencing their battle are as lucky and supported as we have been. 
Recently, I went through some cognitive assesement testing.  Now I am waiting to hear the arrangement between the occupational therapists and the insurance company to strengthen full recovery support.  I will probably know a bit more after Christmas.  Regardless of the testing and post surgery assessments, I have been very lucky to spend quality time with my growing family. 

To those of you that have been in contact  with us and provided support to our family over the past year - again thank you.   Our 2011 challenges/successes have strengthened the direction of a great  - hopefully quiet - 2012 year.

One month already

Wow - Nathan is already one month old!  It has flown by....okay, maybe the first 2 weeks didn't exactly fly by, but looking back, those first two weeks seem like ages ago, and Nathan has already changed so much from day one (he now weighs 9 lbs 4.5 ozs).  I would say he's out of the newborn stage, and into the baby stage.

Yes - the first two weeks were a bit rough - as I think is often the case for new moms (ah - the joys of breastfeeding and sleep deprivation!).  At week two, I took what I thought would be a quick trip to the ER for a post pregnancy health thing I just wanted to follow up on.  It turned into a 5 hour trip - which would normally be fine, but I missed my little guy (that's a long time to be away for a new mom), was sleep deprived and, with my hormones being out of whack - I was a little bit of a mess by the end of it.  Had the doctor questioning me on whether I had post partum depression.  No - just sad - that's allowed right?

Well, now we are at week 4, settling into a routine, managing a bit more sleep, and enjoying our kidlets! 

Stefan is doing well.  Even though I have him sleeping in another room so he can try for a full night sleep, less sleep and the extra stress takes a toll on him too.  He notices more memory issues - hard to say if it's at all radiation related, or just the effect of having a new baby in the house (if you bump into him and he's forgotten your name - don't be offended!  :) ).  He is now on long term disability, so we are just enjoying the extra time at home.  We imagine he will start a gradual return to work in the new year.

Hope everyone had a great Halloween - here is a picture of our fairy princess and pumpkin!

Our Pumpkin

We are so happy to introduce you to our thanksgiving pumpkin! 

Nathan

with big sister Charlotte!

Nathan Göran Lageston was born on October 7th at 2:48 pm.  He is a perfect little bundle weighing in at 7 pounds 1.4 ounces and measuring at 19.3 inches long!  He has a full head of hair and a dimple on his right cheek (opposite of daddy and Charlotte).

It was a scheduled c-section, which went very well, and we were home after 2 nights.  We have plenty of help from family as we adjust to being a family of 4.  Charlotte is enjoying her new role as big sister (or at least all the attention that comes along with it).  It's good that she's been such a daddy's girl the past few months as she hasn't seemed too put out by mommy having to be with baby.

For those who don't know - Stefan and I's wedding date was 7/7/7 - so we found it quite lucky that Nathan has a 7 birthday - Charlotte is the 21st (7+7+7) - so kind of neat!

His middle name is Swedish - and is also Stefan's middle name - if Nathan turns out anything like his father - I'll be a happy mamma - so I figure the middle name is a good start! 

I hope everyone had as great of a Thanksgiving weekend as us!  We certainly have a lot to be thankful for!

ps. Robin was the winner of our baby pool - Robin - we'll have a little something for you next time we see you!

Poor Stefan

My poor hubby woke up this morning with severe vertigo - definition of severe being (if you have a weak stomach - skip a line) accompanied by vomiting.  I was thankful for the timing - if this had happened a week ago before his MRI - I would have been freaking.  Stefan made a quick call to a friend of his who had a similar experience a few years ago - she wasn't available - but he talked to her paramedic husband who helped put our anxiety to rest a bit.  (likely flu/ear related - as we just had the MRI Wednesday - we weren't thinking tumour)

My step dad came over to watch Stefan while I ran Charlotte up to daycare (Thanks Gerald!), and when I returned, once Stefan felt able to make it out of bed - I took him to Royal Columbia. 

They actually got us in pretty quick - perhaps it was the vertigo/vomiting/brain tumour trifecta that was the winner in the er room?  After running through all the history (I felt very proud of myself for having his pre radiation MRI on disc - and the Dr. actually looked at it, along with all my reports!), they did a cat scan (to rule out anything brain related).  Stefan got some medication to help with the vertigo - and we will be following up with our family Dr. on Thursday. 

Stefan has always felt something wasn't right with his left ear since his second surgery.  He describes it as a bubbly feeling.  He has had numerous Dr.'s check though and it's always pretty clear.  We are guessing the vertigo is tied to his ear - so imagine Thursday will result in a referral to an ear specialist - but I'm only guessing!

Glad to be off work so I can take care of my hubby!  Now - just need to get this sorted out before baby comes - otherwise I really do need to look into trading him in for a new model!  I'm starting the search for the kryptonite someone obviously has hidden somewhere in our home - wish me luck!

Good News

We had our 3 month post radiation MRI and Dr.'s appointment today.  For me the realist - it was great news, for Stefan the optimist - it was a bit anti climatic.

Stefan was hoping the news would be "There is no more tumour - you don't have to come back (to the cancer center) again". 

The actual day recap:

• We started with the MRI at 2pm, we actually got in a bit early, and it was the fastest MRI Stefan has done.  We then had a wait as our Dr.'s appointment wasn't until 4:30
• After waiting on the Dr., we got in to see him around 5:30. 
• The news:  The tumour is decreasing in size - YEAH!  And should continue to shrink - YEAH!  As the radiation will continue to do it's job.
• Next:  now we just return every 6 months for the next 5 years for an MRI. 

So....we are really happy with the news.  I'm very optimistic.  Stefan's attitude of this tumour being gone has, and will go, a long way.  Cancer research is making huge strides each day - think of where it will be in 5 years. 

Thank you everyone for all the positive energy, thoughts and prayers - I think it was a huge factor in our battle! 

Next for us:
- we'll continue to frequent support group, and brain tumour awareness seminars
- there is a workshop on October 31st for post treatment cancer patients - Stefan will probably go, but I think I might be a bit busy with baby
- we are still waiting on LTD.  Stefan attended a workshop at the cancer center Monday on returning to work post treatment.  It was a long day for him - and a good indicator on what it might be like to try to return to work full days (he was very tired).  Once we hear from LTD - hopefully they will look into a gradual return to work plan.
- while we eat pretty healthy - I'll probably focus on feeding Stefan more immune boosting and cancer fighting foods - can't hurt right?
- we will be enjoying our little family - and be thankful for every day we have together (that's our sappy content for the blog)
- a Charlotte update - Charlotte had her last physio appointment yesterday, she has improved so much in the past few months (it's hard to believe she has only been walking for 4-5 months).  While she's still 'behind', they have closed her physio file, and her physiotherapist is confident she'll continue to do great - and will probably be running and jumping by her 3rd birthday!  We were also scheduled to attend a speech course to help with Charlotte's speech - but on her first assessment - turned out she's too advanced for the course.  That was such a relief for us to hear!  She'll get looked at again when she's 3 just to see if she's missing any sounds - but she has turned into quite the chatterbox the past few months!  That's our girl!
- a Baby update - fluid levels are back to normal (yeah!), but baby is still breached.  Each week it's a bit different - we don't know what to expect anymore!  This one likes to keep us on our toes.
- since the brain tumour is still there, I guess brain tumour man still exists - so we won't hang up the blog's boots yet - but posting won't be quite so frequent - I'll try for monthly updates!

Now to buy a lottery ticket!

Baby Pool

We set up a baby pool (the gambler in me!).  Please participate - and we'll have a little prize for the winner!

My original due date was October 15th.  The Dr. thinks it will be 2-3 weeks early - through c-section  (c-section hasn't been scheduled yet - they are monitoring babies growth to see).  So - that means it will likely be sometime between September 24th and October 1st.  I'm guessing it will be on a week day during the day - but what do I know.

Baby Pool - Click Here

Good Luck!

Waiting...

It's labour day - everyone is busy getting back into routine - and back to the school year while we are in waiting mode.

Waiting for:

• Baby - which will be sooner then we thought!  My fluid levels are low so baby and I are under watch and will likely be delivering sooner then we thought.  Baby just wants to be just like it's big sister - as it was the same situaion with Charlotte.  So - we have weekly ultrasounds and non-stress tests.  Baby will probably make it's appearance end of September or early October!
• Stefan to hear from LTD and hopefully start steps to go back to work (hopefully that will involve a neuropsych assesment and a gradual return to work plan)
• Our September 21st MRI and appointment for Stefan

While we've had a good summer focusing on our family - we have also had some very sad news on two close friends of Stefan's and mine.  Two close friends are about to fight or are currently fighting breast cancer.  It's so hard to watch this terrible disease impact such amazing people.  It really is all our fight!

I'll leave off with some pics!  Next update will be when we've heard on one of the three things above!  Which will be first?!

We received a romantic flight for our anniversary last year - and finally got to use!

Stefan got to taxi the plane, take off and fly it! 

Charlotte helping me get ready for baby by testing out the baby bed!

Charlotte and Daddy at Buntzen today!

Long Overdue!

Sorry for the long hiatus between posts!  We have been busy not being too busy!  We have been enjoying the summer and not having Dr.'s appointments, MRI's, or radiation to deal with.

Here are some of the highlights of the past two months:

1. Stefan has had plenty of quality time with his little girl
2. Charlotte has grown in leaps and bounds - she is now running, jumping, dancing, singing, doing her abc's, counting to 10, and just being cute!
3. Between my pregnancy brain and Stefan's half brain - we have managed to not forget Charlotte on any of our outings - kudos to us!
4. We enjoyed weekends away to the Okanagan, a friends cabin and Sechelt
5. We had a couple projects done around the house and are slowly getting prepared for baby
6. We have filled out Stefan's LTD forms - he is hoping to do a gradual return to work come September - but he has definitely been on the tired side the past couple weeks (even more so than right after radiation), so we'll see how he is over the next month
7. So yes - Stefan is doing well - but tired (and less hair)
8. We managed to host a couple friends over for a BBQ - key was to host it on a Sunday (so guests don't balk at our 10pm bedtime) and to buy everything premade at M&M... - perhaps by next summer we will be back to our cooking/hosting ways of the past!
9. I found my long lost half sister - very exciting!  Will be meeting her this weekend!

It will be 2 months tomorrow since radiation was completed.  The past 2 months have been a nice reprieve - but I think the next month will be a longer wait as I'm now anxious to see what's going on in my man's brain.  Our appointment is September 21st - and the MRI will take place the same day.  In the mean time, we have my growing belly, our very entertaining girl, and hopefully some nice summer weather to distract us.

They Survived!

Today was Stefan's first day having Charlotte on his own since his radiation has begun - and they both survived!  Charlotte's daycare closes on the same schedule as the schools - which works out fantastic when one parent works for a school - but I was stressing a bit about it a month ago when we weren't sure what Stefan's condition would be post radiation and whether we would need back up care for Charlotte over the summer.  As the time got closer - Stefan seemed to be doing pretty good - so I hadn't started on looking for alternatives.  Today was the true test.  Stefan was a bit nervous - but he and Charlotte did just fine - and had a great day together (I'm a little jealous!).  It works out well that they are on the same nap schedule!  He has some help tomorrow, and Charlotte's daycare is open Wednesday which works out well so Stefan can get a break midweek.

I'm back to work and doing well (as is the baby bump).  Stefan is doing great too - needs his afternoon nap - but who doesn't!  Hope everyone is enjoying the sunny weather!!!!

Our girl on Canada Day!

update

It's been a bit since I posted - and some pictures from Stefan's last day were due.  It's been 11 days since Stefan finished radiation.  He's doing well!  Some additional hairloss, plugged ears, and the need for afternoon naps, but otherwise, still active!  I had a bit of a scare on Friday night which had me going to emergency - baby is A-okay, but doctors orders are for me to take the week off work and take it easy (easier said then done when you have a toddler and hubby recovering from radiation -  but am doing my best as I would hate to end up on bedrest!). 

Stefan's radiation day routine always started with starbucks (also validated our parking for the day!).  The staff knew Stefan well!

Last check in!

Cheesy thumbs up shot!

Stefan with the fantastic radiation therapists!

and....our good bye shot to the radiation room.

Happy fathers day!

I thought I could take today to brag about Stefan and get away with it! I am so lucky to have such an amazing man as the father of my child(ren)! Not only do they get to inherit his good looks and kindness, they get an amazing father!  Happy Fathers Day to my very hands on, house cleaning, cooking, wrapped around our little girls finger, tumor kicking handsome hubby!!!!! Love you!

(And to all the other wonderful father's out there - have a fantastic day!)

An old favorite pic from last year's Olympics!

Last Day - Message from Stefan

I finished the third round in tumour treatment today.  It is hard to believe that it has been exactly 6 months -exactly  182 days  -  of experience that has had an unbelievable impact on my family's life. Two surgeries and one 28 day treatment of radiation.  December 17, 2010 to June 16, 2011.

I had my final meetings with the radiation staff that ended in a very positive aura. They provided me with info  on the side effects I am experiencing/could still experience, with info on the protection I need to take from the sun and with encouragement to call the clinic if there is anything that hits me between now and my re-evaluation  on September 21st.  They were a great positive team who showed my treatment to whoever drove me to my appointment.  They reminded me today at how happy they have been with showing people what is done in radiation.  The more people know, the less in the way of radiation rumours, fear and misconceptions are spread.  I have written info on and life - experience in the system that  I would be willing to share if it helped those experiencing the cancer world.

Tomorrow is the start of recovery - a new day.  I believe the tumour has been eradicated.  No tumour could survive two surgeries and being zapped for a month.  I am going to have a swollen side and hearing problem  for a while as well as still needing an afternoon nap.  Seems rather small in comparison to what I was experiencing before the first surgery.

My family and friends have provided me with recovery motivation.  I have had supportive drivers, supportive contacts and supportive prayers from my family, Taleen`s family, friends we have worked with, friends we have across the country and over seas, friends from rugby and friends  from high shchool and university. 
To everyone who has provided me and my family with support - Thank you.  The help was greatly appreciated.  I want to be in touch with you soon.  I will be writing a blog again soon with other reflections.

It is time for me to get ready for the new start.

20 down - 8 to go

Hope everyone is enjoying this sunny weekend!  We had a busy, yet relaxing day!  Stefan got some yard work done while trying to avoid the sun, I got our veggie garden planted, and we managed some afternoon fun at the beach for Charlotte while we kept Daddy in the shade!  We just finished watching the Canucks win - and are now just enjoying milkshakes!  Stefan has completed 20 days of radiation - only 8 to go.

general: Radiation is starting to get to Stefan.  Not being able to do all he typically does is frustrating for him.  It's hard to watch my superhero husband battle being weak.  He truly is amazing in how he's handling this.
fatigue: Stefan is tired.  He would have trouble going without his afternoon nap.  I send him to bed as often as possible - even if it's just to watch tv in bed.  He's doing too much (yard work a prime example) - maybe it's my nagging him to take it easy and not actually the radiation that is causing the fatigue?
hair: It's started to come out in clumps - tough for Stefan.  His scalp is quite sensitive now too - so past the point of shaving.
other: Just one ear that's a bit plugged - but otherwise no other changes!   Although he hasn't complained about having salad three nights in a row, so I suppose that could indicate a change!

Spring Sprint Success

It was a beautiful day and a fantastic turn out for the Spring Sprint!

We were overwhelmed by the turn out!  Stefan and Charlotte enjoyed the walk and getting to see everyone.  Just wished we had managed to get better visits in with friends/family - it was a bit of a whirlwind!  I'm not sure what the final tally was - but I think we were close to $5,000 raised for brain tumour research!  Thanks everyone! 

I don't usually like to post pics of other people - hoping Team Lageston doesn't mind!  Sorry to the couple people who got cut out - none of the photo's got the whole group :(

Brain tumour man and Superchuck before the walk

Stefan, Cheryl Bernard and a silver olympic medal!

It was Charlotte's turn to see the neurologist today.  The Pediatrician had put the referral in a while ago.  At the time we had said "if Charlotte is walking by then do we still need to go?", and I remember her saying no, we can cancel it, but we thought it can't hurt to go.

So, we went, fully expecting the neurologist to say "she looks great, is doing well, and you can go".  Wellllll......it didn't quite go according to planned.  After the regular questions and checks (quite familiar to us now), the Dr. said he would like to do a MRI.  Because Charlotte has delays in two areas, speech and gross motor, it's general practice to do a MRI, metabolic and genetic testing.  The Pediatrician had already done the testing (all with good results), so last step to do was the MRI.  It would be both on her brain and spinal cord.  While she's progressing, and there has never been regression, this is general practice in determining the 'why'.

So....I initially wanted to shout "my daughter is just fine, she's been progressing remarkably this past month.  leave her alone - buzz off!".  But, my rational side calmed myself down and tried to listen.  It can be a 2 year waiting list for a sedated MRI (the idea of sedating my little girl for a MRI is in itself terrifying), but the Dr. expects us to get a call in 6-12 months.  It's likely nothing....at least I think this is what I heard the Dr. say.

I'm a little numb right now.  The last time 1 of the 2 (now 2.5) most important people in my life went for a MRI, my world was turned upside down.  We didn't think anything was wrong with Stefan.  Brain tumours are not genetic - but of course it has crossed our mind (how can it not). 

I was overwhelmed before today's appointment.  I'm away for 2 days next week for work.  Between preparing for that (work wise and making sure the home front is taken care of), day to day appointments/meetings, Stefan's illness, arranging work for the house, and day to day tasks like cutting my little girls nails....I was already feeling the pinch.  Going from the high of the happiness of my little girls birthday party, to all the scary thoughts associated with her getting a MRI.  It really hasn't been a good day.

Shall I get a little cheese to go with my whine?

Are we working ourselves up over nothing?  Does it just seem like alot since our plate was already full?

Our Girl Turns 2!

A toddler birthday party is a great distraction to radiation!  And when it falls on a long weekend that stills gives us 2 full days to recover from said party - that's just lucky!

Our girl turned 2 yesterday - and she had a fantastic time at her birthday party!  We tried for as simple as possible with the 'rent the hall' route - and it was a great decision.  She had a blast with bouncy castle fun and all her little friends! 

bouncy castle fun

mmmm... cupcakes - or should I say - icing!

a very happy girl with all her presents

Radiation Update
Stefan has had 11 of his 28 treatments.  His drivers for the past week have had the pleasure of a tour of the radiation room and view of his treatment.  So my visit on Friday I took the same tour.

these beams make sure he's lined up just right

the machine - this can move 180 degrees, the bed also moves, quite the production

hard to see - but those two screens show Stefan in treatment

Radiation Check-in:
general: Stefan is still good.  I think he is pushing himself harder then need be.  I worry about him and do my best to not nag him too much to take it easy.
fatigue:  Stefan is on the tired side.  Still manages to go for a run during the week before radiation.  He thinks it helps with the treatment.  Not sure how much longer he'll be able to continue with it - we'll see.
hair: no loss yet
other: none so far!

Spring Sprint
The Spring Sprint is only a week away.  If you would like to join - try this link . I know the website is not the greatest - but bare with it please.  If you haven't signed up - please do so organizers can plan numbers wise.  There will be burgers after the run!  Also - if there is anyone who would like to volunteer to help with a kids tent by helping with face painting or such - please let me know!

Busy Sunday

I over did it yesterday.  Stefan, Charlotte and I did the 5km Coquitlam Principal and Vice Principals Association (CPVPA) Cancer walk.  Then we had lunch with friends and their little ones, and then we went and saw MacHomer at the Vancouver Playhouse.  As a result, by the time we got home at 5, I was done (in hind sight, perhaps the shoulder and flying rides for Charlotte were not the best idea).  Luckily for me - Stefan is still in good shape - and I got to lay down for the rest of the night!  I figured I might as well cash in on my nights of TLC while Stefan can manage Charlotte as I will be reciprocating soon.  That's what marriage is about right? Give and take.

Enough about me - I know all my readers really just want to hear about how my superhero husband is.  So here's our 7 days of radiation check in:

general: I've been told Stefan looks fantastic by many people - I believe they are referring to his general happy attitude, and not necessarily his rugged good looks - either way, I can confirm he is looking fantastic on all accounts! 
fatigue:  Stefan was on the tired side Friday/Saturday, but otherwise he's doing good.  I've rearranged our driving schedule so I will be on Friday's - as we can tell already these will be his toughest days.
hair: still all there, or should I say, all that he started with is still there!
other: no other symptoms of note so far!

Big News

We have a very exciting announcement!

We are pregnant (well, I'm pregnant)!  We are expecting a little brother or sister for Charlotte in October!

I know this will come as a shock to many people.  And some of my, rather blunt, friends have asked the obvious questions that probably popped into many of your minds. 

So - I've put together a lovely little Q&A in my nothing but the truth fashion:

Q: Was it planned?
A: Yes

Q: When did you have time?
A: Well, I'm 18 weeks pregnant - you do the math.  The day I found out, was the same day we found out there was brain protruding from Stefan's brain and he would need another surgery - fun.

Q: Are you crazy? or Don't you have enough on your plate?
A: Perhaps.  But - I don't think anyone who has kids, has wanted kids, or has had trouble having kids would doubt our decision in a moment.  Sometimes you can't really plan these things, and the side effects of radiation or chemo could have made it much more difficult had we waited.  So, while we know we are up for a crazy year ahead - bring it on!

1 down - 27 to go

Radiation began today.  1 of the 28 sessions down.  Our appointment was for 9:10, but for whatever reason, they were running quite behind today, so we had a long wait in the waiting room.

Each session will have 4 bouts of radiation.  Each bout is only about 5 seconds, but they have to rearrange Stefan between each bout to get the angles just right.  The whole session should typically be between 10-15 minutes.

We really don't know what to expect from side effects.  We have heard such a range of experiences - from "a walk in the park", to a year of fatigue.  So we'll just have to see - everyone is different.  Stefan should get some nice strips of hair loss within the next month or two - but as he says "hair loss if nothing new for him"!

I wanted to say extra special thanks for everyone who volunteered to drive.  We have a driver for Stefan every day!  It will be so nice for him to have company, and be home for afternoon naps if needed!

Here are some pics from the day (he sported his jersey from the SFU rugby club)!

now really Stefan - is that the right expression for starting radiation?

that's better!

our girl at Boston Pizza - we were amazed by how much she ate!

but of course there is always room for icecream!

Did I bite off more then I can chew?

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!

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!

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:

• 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

And....the best news of the day, Stefan got permission to drive!  He'll take a test run this weekend.  Of course, once radiation starts, this will probably go on hold again, but he can drive in the meantime.

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!

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.

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????

p test and Charlotte walks

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!

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:

• 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

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!

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!

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!

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!

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.

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!

girls night in

Sorry for the delay between posts these days.  I guess avoiding writing is my way of trying not to think to hard about the situation.  But - reality sets in.

As noted in the last post - we had two very different surgeon opinions.  We had said to Dr. C (surgeon #1 - who did the December 17th surgery) that we would want another opinion.  He had referred us to a Dr. A at Vancouver General - but Dr. A ended up passing us on to Dr. T.  Dr. T also works out of Vancouver General and is another one of the surgeons who works with the cancer clinic.  We have heard his name before (from the support group and our oncologist).  He is known to be more aggressive in his treatment.  We meet with him on Thursday - and expect his opinion to be more in line with Dr. L - the second surgeon.

We are still leaning towards surgery.  Dr. L is off for spring break - so we are guessing it will be an early April surgery.  That means - 6 weeks to recover from that, then a month and half of radiation - and then Stefan will probably sleep through the summer to recover from radiation - fun!

Stefan is frustrated and antsy these days.  If you have time to shoot him an email - it will give him something to do!

He had a busy weekend though.  He had an English cousin in town from Australia who he saw Friday night.  Then two of his best buds had him Saturday night.  One of them drove in from Salmon Arm - and is currently making the trek back along the long route to try to avoid the snow storms! 

So - while Stefan was out (my first night away from Stefan since he got home from the hospital) - Charlotte and I had a girls night in - which means she slept while I cuddled up with the couch, a movie and plate of nachos. 

Woke up to the beautiful blanket of snow!!!  We just got back from a walk - and Stefan and I will start watching the (delayed) Oscars once Charlotte's in bed.

Stay tuned - we have support group Wednesday and the appointment Thursday - will keep you posted!

Decision Time

We had two meetings this week with two different surgeons.  The appointments were like night and day, very different - in approach and opinion.  That makes it very difficult for Stefan to make a decision on surgery - so we are going to enlist a third opinion. 

	surgeon #1 (Dr. C)	surgeon #2 (Dr. L)
length of meeting	15 minutes	1 hour
props	none	model of brain, both MRIs
opinion	no more surgery, just do radiation	70-80% of tumour can be removed with minimal risk
risks of surgery	- Stefan would be a vegetable who wouldn't know who I was (he used the word vegetable a lot)	- minimal - 1-2% chance infection (typical for any surgery) - minimal bleeding risk - 5-10% chance of some speech impairment (not so severe he couldn't communicate) - 25-30% chance of loss of vision in top right line of sight (already experience some loss here)
Rest of conversation	none	- explanation of both MRI's - explanation of the risk of having so much pressure on the brain - explanation of surgery (using MRI to map where they are cutting) - not doing surgery now would not close the door to surgery, could do radiation and surgery at a later date (but recommendation is for surgery now by both Dr. L and Dr. M)

Stefan is understandably worried about the risks.  But - we are also thinking long term.  We want Stefan around - and want to take the steps to keep him around as long as possible.

Right now we are most likely going to go with surgery as the next step.  But - we will enlist a third opinion - and hope that the third surgeon's opinion is in line with Dr. L.  Once we decide on surgery - it would take place probably within the month.

Happy Valentines Day

Happy Valentines Day everyone!

We celebrated a day early.  Stefan pulled out all the stops with a romantic dinner (at the newly renovated Horizons)! 

I failed miserably at the romance - so hope to make up for it with this poem:

Roses are red,
Violets are blue,
tumours suck,
but I'll always be there for you!

Wishing my best friend/husband/love of my life a very happy valentines day!  Love you honey!

dentist and mexican

We took Charlotte for her first dentist appointment today.  She did so well - we are quite proud of her.  Of course they don't do too much - but the dentist said her teeth look good - yeah!  My turn tomorrow - it's been just over a year since I've been - I guess I was due!

We followed up the dentist appointment by having dinner at our favorite mexican restaurant - Charlies on St. Johns - we all agreed it was yummy!

mmmm - cheese quesidilla and french fries!

so many doctors

We had our appointment with Dr. M (oncologist) today.  The point of today's appointment was to go over what we had learned on the phone last week and find out which surgeon we should get our second opinion from (we had already decided we wanted to get a second surgeon opinion).

It was a really good appointment.  Dr. M takes his time, says things in a way that is easy to understand - and just seems like a really nice guy!

He had gotten some feedback from the neurosurgeon that is usually at the Dr. meetings (those Friday meetings with all the Dr.'s where they discuss patient cases).  That neurosurgeon believes that surgery could be done to debulk quite a bit of the tumour with minimal risk.  Dr. M will put in a referral for us - so we are looking forward to meeting him and hearing his opinion.  We asked about who is the 'best' neurosurgeon - but Dr. M gave us the politically correct answer of "they all have to be good to become a neurosurgeon" - I guess that's true though!  We are happy to go with the one that works with Dr. M - he sounds like a middle of the road surgeon (not too aggressive, not too conservative) and obviously works well/communicates well with Dr. M - can't see how that wouldn't work to our advantage.

Dr. M also spoke to Dr. C (the December 17th surgeon).  Dr. C has reviewed the MRI and is still of the opinion of doing no more surgery.  It's confusing - before - Dr. C had informed both us and Dr. M that a good portion of the tumour had been removed.  Now he is saying - he took a modest amount as he didn't want to take any of Stefan's functioning abilities - he instead put in this window (the hole in Stefan's skull) to alleviate pressure.  Which it did.  Our analogy is it's like if you have a leak in your roof - and you put a bucket to catch the water instead of fixing it.  It's frustrating to hear different things from the same surgeon!  While we're thankful that Dr. C did a good job of getting Stefan out of the 'life-threatening' situation on December 17th - we are still confused by his approach.  But - who am I to question a neurosurgeon!

We have an appointment Tuesday with Dr. C.  And hopefully an appointment with the second neurosurgeon soon after!  This is brain surgery - I can understand Dr. C being conservative - but we want a long term view on this.  We will just need to learn all the risks so that we can make the right decision. 

Dr. M went over the before operation MRI as well as the January 27th MRI.  Very interesting to see the pressure on the brain stem pre-operation.  You've all seen the 'window' alleviating the pressure.  Not much was removed from the surgery - that was seen in the MRI's.

Stefan did get some good (although if you asked his mom - she would take it as bad) news that probably made his week/month/year.  Dr. M said he could still play rugby in the future.  Once they get a metal plate on his head where the hole is - it's very possible for him to play again - not anytime soon though!

medicine

After Friday's bad news, we were lucky to have some preplanned "perfect planning" visitors to supply us with a healthy dose of laughter and family time.

Two of my best buds from Whitehorse arrived Friday and left this morning.  It was really hard for me to say good bye.  It was so nice to have them here this weekend.  I had some girl time Saturday night and we went for a very relaxing facial Sunday.

Stefan's parents were also here - and I'm sure they appreciated having Stefan to themselves for bits of Saturday/Sunday.

There was definitely a shift in Stefan's mood last week.  Today he was out and about with his parents - and we are already seeing him getting back to his more cheerful self.  We hope that some extra trips out of the house (either to the school or elsewhere) will keep his spirits up.

So - although Friday's news got us all down - we had great company to bring spirits up!

Bittersweet

Yesterday was a Bittersweet day.

We got the call from Dr. M (Oncologist) about the results of the MRI.  They still want to pursue surgery as the next step.  Summary below.

1. The surgery on December 17th didn't remove much of the tumour.  (contradictory to what the Dr. C, the surgeon had said - but now confirmed with the MRI.)
2. I don't know quite how to explain this - but will try.  The 'mass', while no longer putting pressure (and shifting the brain stem) is now pushing the other way - the tumour (or perhaps brain too?) is pushing out of the hole in Stefan's head where the surgery was.  A picture tells a thousand words:



Post Operation MRI - taken January 27th - note the protrusion on the right.

3. So, the oncologist would still like to do surgery, for the following reasons:
    -  to debulk the tumour (obviously this wasn't really done the first time around, and it's still really big)
    - debulking as much of the tumour as possible means a better prognosis
    - to get a larger sample for pathology (brain tumours can have different types of tumour - the larger the specimen - the better we know what it is and how to treat it)
    - radiation causes swelling, right now with the size of the tumour, it doesn't leave much room for swelling, that could be dangerous.
4. There was no neurosurgeon at the doctors meeting Friday (when they were reviewing the MRI).  Obviously a neurosurgeon needs to be consulted before we decide on surgery.
5. When I spoke to Dr. M and voiced that Dr. C had been insistent that no more surgery could be done, he said:
   - Dr. C needs to review the post operative MRI before he can say
   - if Dr. C still says no (since some doctors are more conservative then others) - we can look into a second opinion.
6. I asked - should I be concerned that there is a chunk of my husbands brain/tumour getting pushed out of his skull?  (ie. should I be sending him out in a helmet from now on?).  No, it's a slow growing tumour - so no emergency here, but he shouldn't be playing rugby
7. We now have an appointment with Dr. C on February 15th.  I don't know how we will be able to wait that long.
8. We will probably make an appointment with Dr. M next week as well just to go over what we learned today.  (I would also like to see about seeing another surgeon sooner - might as well get that second option now)
9. I was impressed that Dr. M told us this over the phone, to both Stefan and I separately, and we didn't have to wait a few more days to find out at an appointment.

So - not the greatest news.  I found out at work, so was a bit shaken and left early.  I know Stefan is frustrated as well.  It was also hard for him to hear it with me not being with him (as the designated note taker and question asker).  It will probably be a wait for surgery, and then it's another at least 6 week wait after surgery until they can start radiation.

I did say bittersweet day - the sweet part was two very dear friends arrived from Whitehorse yesterday for the weekend.  It was nice to have them to talk to as soon as I left work.  We had a great evening together (with Stefan!) and hit the casino - it has been quite a while since we had a night out that didn't involve the ER!  I have some girl time planned tonight while Stefan will be 'watched' by his parents!

Support Group

Stefan and I attended our first Brain Tumour Support Group today.  It's once a month.  It was a really good experience - some of it sad - but overall the tone of the meeting was hope.  The facilitator said "what happens in support group, stays in support group".  And even if I could share - I don't think I would - it was just to personal an experience.  We'll definitely go again - next month they separate the caregivers from the patients - I think that will be a really good experience.  There are all sorts of thoughts/feelings I haven't been able to share with Stefan - he's in a good place.  I'm the information finder/keeper - and with that comes some scary thoughts - I keep those to myself as I want him to stay the positive and determined fighter he has been.

I decided to take the rest of the day off from work too - and Stefan and I had lunch on Granville Island - it was nice to spend the day with my Hubby!  I think he enjoyed it too - being cooped up at home I think is starting to get to my 'type A' husband.  He is getting impatient!

The doctors meet to discuss the MRI this Friday - so I imagine we will have a meeting early next week to discuss the plan.

And - some big news - Charlotte is slowly taking steps to making her first official steps - that is if we don't count her wobbly 2 steps between Stefan and I.  We are working on it every day - daycare is too - I think we'll have a walker soon!

Where there's a will...

I have a confession - we don't have a will.  We've spent a lot of this weekend trying to prepare for getting one done.  Asking ourselves all sorts of difficult questions like:

1. Who would look after Charlotte when we're gone?
2. Do we want to be buried or cremated?
3. What are our wishes with respect to medical treatment?
4. Who should we choose as an executor of our estate?

There all sorts of tricky questions - we made good progress - hopefully we can arrange to see a lawyer with the next week or two.

We also phoned our employee assistance providers today to see what kind of things they offered.  Low and behold - Stefan's provides 25% off lawyer fees - talk about good timing!

We also started the sesame street detox program today.  I'm sure I'm not the only mom out there that results to mr. boob tube with a sick child.  Detox involved:

1. A walk to newport village;
2. Baking in the kitchen - I made chocolate chip oatmeal cookies, Superchuck made a lovely concoction of flour, water, toddler puffs - and mushed up chocolate chip oatmeal cookies;
3. Washing up the results of our baking.

We are now just about to sit down to a lovely steak dinner provided by Deb, Donnette, Carmel and Claudine - thanks ladies!