Some Days

Some days you sleep too deeply.
The nights of waking up all night for rashes, medication, bathroom breaks, feeding the baby all catch up.
And then for a few days I sleep too deeply and it hurts to wake up.
They say that if you don't get enough sleep it's similar to being under the influence of alcohol.
I will agree with this as I fell into the wall twice while walking with Simon to/from his bedroom during the night.

A kind friend at work is loaning me a very thick yoga mat to take naps on at work if I need to.
I just may have to do that!

Cycle 6 of Simon's chemo is one that we've had before- we knew what was coming.
5 days after chemo Simon spiked a fever.
Any fever over 100.4 for an hour requires a call to the oncologist and 99% of the time an admittance to the hospital.
So we were admitted this last Thursday night around 10pm.  Luckily we got admitted straight to the unit instead of going through the ER which they usually have you do.
Fevers lasted until Saturday night/Sunday morning at 12am.
You can't go home until you go 24 hours without a fever.
Plus he had mouthsores that were making it very unfun for him to eat/drink anything.

Upon admittance he weighed 18.9 kg (41.66 pounds).
We were there until yesterday (Pioneer Day here in Utah) at 2pm and he weighed 18 kg (39.6 pounds).  So in 3 1/2 days our little man who was just starting to put weight back on lost 3 pounds.
Sigh.

You could tell he was really getting sick of the hospital on Sunday/Monday because he kept asking for his sister, to go home, and needing more new toys.

While there I text back/forth with a cancer mom about her boy Ben who is just two treatments ahead of Simon.  We have to be grateful for small things during this.  But sometimes there are big things- Ben gets the mouthsores so horribly.  To the point where he just can't breathe/function like he should.
Please say a prayer for Ben that his bloodcounts can go up fast to help him recover!

And in speaking about bloodcounts Simon is pretty much at 0 for his ANC.  Which means that he is very susceptible to infection right now.  So we're staying put at home with the occasional drive in the car just to get out.  We're thinking about going to a drive-in movie this weekend so he can still have some fun but be safe.

So it'll be a quiet week for us comparatively.
We still have to do IV antibiotics every 8 hours but his neupogen shots.

We are 3 weeks out now from his first admittance for a Stem Cell Transplant.
Getting very nervous for how things will go.
I know he'll be fine but it's still hard when you usually only hear the bad stories.
But all the nurses assure me that SCT are easier than bone marrow transplants since it is your own stem cells.

Life is not predictable nor does it go the way you plan.
Normal is relative and we certainly live a "new normal" now.