Thursday, April 4, 2013

tired.....but well

Luke had a great day at CHEO today, lots of people to play with, lots of hugs, and lots of love going around!  I was really proud of him.  He was happy!  I mean, except for the blood work part...
He teased Molly Penny, and put her on time out, he saw Brenda, hugged Pam and Anna.  He played with Robert and Jeff....and the list goes on!  I was thrilled to see Luke having a great time.  It made me kind of sad to think how sheltered he's had to be, considering how much he LOVES to be around people.  I think it's time to carefully get him out there more.  He's lonely for fun! 
His counts came back (after a bit of a confusion with the staff at CHEO--see Caringbridge post) quite high.  He'll probably be given more chemo to keep his counts at a lower level.  I felt kind of guilty as he waltzed around the MDU today, looking so good, and so healthy..like he should still be looking really sick and bad...
We are blessed that he's doing so well.  I don't take this for granted ..at all, for an instant.....

I know that we are in Maintenance now, and I think I kind of forgot to enjoy it, as I'm still "coming down" from the previous year+ of the heavy duty chemos, and inpatients etc.  I know the shock of it all will come more when it's all done, in 2015...slowly, we are finding our way.  I realize how fortunate Luke has been to not have been an inpatient since last May.  He's managed to avoid fevers and sickness, even when he was 0.0 for many many days and weeks, a true miracle!  He's managed to still avoid all the colds and flues that have circulated around this house.  More miracles.  He's doing so well.  I tell myself, "the other shoe wont drop, it wont drop..it wont."   I miss kneeling down on the pew at our old church, as our new one is not yet built..I need that quiet with the candles and the time to feel my prayers, and not just say them...I miss a lot of stuff, but I am realizing God's larger better plan.  We have become SO tight and close, the 7 of us.  The situation is hard, has been hard, continues to be hard...but we are sticking by one another.  There are days when everything is chaos and we still get through.  We celebrate quietly with one another, and live noisily with one another.  We are a family still teaching, still working, still cooking, still cleaning, still laughing, still crying, still struggling, and still praying.  This wont change, but the depth in which we do it, has changed.

I keep in touch with many many other childhood oncology families with much harder paths to forge...I know we are fortunate...I lie in bed and pray for so many kids and their families...I wish at times that my kid's "friends" were just normal kids, who's biggest issues were not the potential to relapse and more...and we do have friends like this..but we also have a lot of friends who are battling, and we are forever fighting along side them!!!  I can't even bring myself to tell Luke when his buddies are not doing well, he knows...too much.  He understands too much, for a five year old.

I am bringing Luke and all the kids to Gabriel's First Communion celebration this weekend, and am so excited.  This is a big deal for us.  It means a lot to celebrate it as a family, and I eagerly await Luke's turn when he turns 8...good things are to come, GREAT things in fact!

2 comments:

Cheryl said...

I hear yah girl... Gabriel congratulation's to you this is a big step for you in your faith journey, may God richly bless you throughout your life. Lean on Him and allow Him to guide you. Blessing on you, I pray it is a joyous time for your whole family!

lifeonwindyridge said...

So glad to hear of your good day and Luke's happiness! That picture of him with the garlic bread in the cafeteria was so precious!
Congratulations on Gabriel's upcoming first communion - it doesn't feel like long ago that Frannie was celebrating that. He must be excited.
You are so blessed to have those eyes of faith - to see the bigger picture, or at least as much of it as God allows you to see - to trust in Him. In some ways it may be easier to see when you are on the front lines of life and death, yet maybe harder to trust, I don't know.
May God continue to bless you with that faith, hope, and love that shines through all your writing.
Phyllis