Ok, so week 6! Flying by..
This week has been quite a straight forward week, we have had the weekly MRI which shows tumour is stable, sometimes cysts might grow or things might change so plan needs to be changed slightly for area of radiation but Louis is stable so no new plan which is great news… 6 weeks in hopefully it will stay that way! He is coping remarkably well and so far just some tiredness and a little off his food but these are normal and expected, he’s so brave X.
We have met some great friends from the US and the U.K and this week said goodbye to our new friends, Allison and Beth but they luckily live in Woodmensterne so coffee and cake back in the U.K for sure. Louis has made friends with a lovely 16 year old girl called Lizzy who also has a craniopharyngioma and was one of the first people who spoke to us when we got to the proton centre, Lizzy immediately spoke to Louis, told him what to expect, would calm him down if he panicked and even stayed late one evening even though she had already had her treatment Louis was having a wobble and she went back with him to make sure the mask was positioned ok, then waited till he returned from treatment ! Which was now gone 9 pm, without Lizzy and Kim the child life specialist Louis would have definitely needed sedation without a doubt, Lizzy you will never truly know what you have done for Louis.
Lizzy graduated Wednesday last week and we are going to miss Lizzy and her mum Patty lots especially Louis, let’s hope no more wobbles we will be getting Lizzy back from Atlanta! Xx
I always seem to be up when the world sleeps!! I’m a worry wart now even more so, but being here with people who’s children are all having treatment together is positive for everyone as we are all in the same boat, we all talk about the same thing and if one of us is having a bad day it doesn’t matter! We all get it! Louis especially needed to see he wasn’t being punished or it happened to him for a reason, we told him obviously but it helps answer the why us!! There’re other kids who are lovely kids and they have the same brain tumour or different types of cancer it makes us as parents realise too it’s not because we are bad parents or people it’s just because for whatever reason bad things sometimes happen!! It’s good for us all to see this. Louis and Harli have both FaceTimed their class this week which is great for them they are always so happy when they see their mates.
Family fun night this week they all got to paint pottery and have pizza it was lots of fun, this weekend we ventured out in the cold and rain to the local soccer match the Armadas and took a trip to adventure landings to drive go carts and play on arcades making some more happy memories with some other families from proton popping to Kilwins ice cream shop to finish off the day! My mantra for this week is, our current situation is not our final destination, one foot in front of the other, 1 day at a time.
Louis finished his 15th treatment Friday so 15 down 15 to go!! Woohoo! 4 weeks and counting xx.