Thursday, May 18, 2017

Things are great

I need to start writing more but my heart just can't handle it written down- it's like it almost makes it too real.

Simon was in the hospital last week for neutropenic fever and mouth/throat sores.
you can see in the above pictures as he went in (May 6th for the first two photos), May 9, May 10- he started feeling a lot better!

We were released on Thursday on the promise that we would make sure he is taking in enough fluids at home without IV fluids.

It was rough Thursday night-Saturday.
Thursday night was my brother's wedding dinner so Simon was with my in-laws who don't push him as hard as us (they're grandparents- they get to be nice :)).
Then Friday was the wedding/reception so we still weren't with him a lot.
But Saturday I was with him all day and we got a lot more fluids/food in him and he started acting better.
Saturday night was a cousin's birthday party and Simon hasn't been able to play with them in months.  But finally his counts/energy were high enough!

Then Sunday was mother's day.  We had a late night the night before so we did skip church.
I wanted to go but would have also been sad to not see Simon up on the stand singing to the moms with the other kids.

But we had a relaxing afternoon.
Went to my parents for an early dinner where Simon (and Meg) got to play with a cousin again.

And that night back to the in-laws for mother's day dessert.

Simon had so much fun with all the cousins over the weekend!
His energy has been SO high that it's fun to see him in no pain at all, eating everything (seriously, almost a full bag of starburst!), and playing.

He's sleeping better (only gets up once or twice wanting me to go cuddle with him), eating better, happier, and it's just amazing to see!

I feel awful he's going back for a scan next Tuesday and chemo #5 on Wednesday.
This one should cause a lot of nausea so we're going to really try and combat that early with extra fluids and extra anti-nausea so he doesn't lose as much weight as last time (he still hasn't gained it all back so we don't want more gone!).

My brother got him this shirt- Simon hated that it said chemo but thought it was cool how people reacted to the shirt

Simon has been selected as the "prince" for Millie's Princess Foundation.  This is an amazing foundation that is doing a fun run and more to help two families every year with the financial burden that childhood cancer can bring.  We are so excited that he gets to be the prince with Princess Mazy!

I am working to get a logo done to make t-shirts for the Fun Run and also for supporters/fundraisers.

My family had a yard sale three weeks ago and then our ward did one last weekend for Simon and a couple other families.  They went so well!
We stopped by the ward yard sale so they could see how well he was doing.

This last picture is from chemo #4, April 25th- but I just love this picture of him!