Day 6

Just a short entry tonight as we have had a super busy day. We had a great opportunity this morning when Sam was disconnected from his IV for the first time since arriving. They taped up his VAD and he got the chance to stand in the shower for a while.

Then, it was off to the orthodontist clinic for Sam to get his braces off. It is too likely that the braces would cause infection with his compromised immune system for them to leave them on. It was quite a challenge for the dentist to remove the braces - Lo/Elliot really put 'em on good! :)

Then, it was time for Sam to get a nap and Debbie and I spent 2 hours with the Discharge Planning Nurse, discussing the "what ifs" after sam is discharged. The biggest risk is infection and it is likely that he'll have to come in many times for IV antibiotics during his treatment. Any time he gets a fever, he has to be admitted to the BCCH for a 7-10 day stint of IV antibiotics. We're hoping this doesn't happen too often.

Our next appointment was with the nutritionist. That was about 2 hours. We talked about how his appetite changes and the incredible importance of continued nutrition through these years. Sam has to keep his weight on or they have found that these kids don't grow. So, it will be a challenge to make this happen properly for Sam. Both of these professionals were amazing and helped us so much. There is so much to learn about this treatment plan and this disease.

We had a nice visit with a family whom we see each summer - Bob and Glenna Hollier and their boys. They kept their distance (literally) and we had a little visit. Sam's face just lit up when he saw them.

Friday will be a big day as he receives chemo in his spine, a bone marrow biopsy and aspiration, and two chemo drugs in his IV... all in one day.

We're hoping he gets released on Saturday.

Thanks again for all the support and prayers. We can feel it.

Ger

Here's a song we listened to together today...

CASTING CROWNS
"Praise You In This Storm"

I was sure by now
You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen",
and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember whenI stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You
But as the thunder rolls I barely hear
You whisper through the rain "I'm with you"
And as Your mercy falls I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth