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Sunday, May 29, 2011

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!

Wednesday, May 25, 2011

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?

Sunday, May 22, 2011

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!