Friday, December 25, 2009

Emmanuel.....a Merrick update

Who is Emma Nuel?
that was the question on everyone's mind as they entered our cozy house for Christmas dinner.
The simple slip of my glittered letters had changed the whole meaning of our message.
Emma Nuel?  I asked.
What are you TALKING about?
Then they'd point and a 'light bulb' would go off for all of us.....

I have been dragging my feet to update you here about Merrick's condition.  Part of the reason was the second opinion we are still waiting on....
and the other part is plain ol exhaustion.
In the weeks leading up to Christmas Jarrod has been out of town, and it's been all I can do to keep up with Christmas things.  I KNOW I sound like such a whiner...but I'm just trying to keep it real here. 
I've said it before and I'll say it again.  I SO do not enjoy being a single momma.  I thank God for sendung me a partner-in-crime to run beside on this race.   He backs me up when I fall behind, he keeps me from giving up and he reminds me to cancel the pity parties....
without him I drop my eyes and forget that Christ will use ALL of this for our future....
we HAVE a hope and a future now!

Back to Merrick.  I overnighted his medical records to a Dr at UCSF.  Unfortunately, this Dr. was on his way out of the country and did not return until today.  He has been in constant email contact with me, but did not have the records to review while we was away.  On top of that he said his schedule is not open for an ablation until the end of January.

In the meantime I took all of our concerns to our current Ped. Ortho Specialist....and he answered every question  I had and set my mind at ease about the surgery.
At the time of our first meeting, I think Jarrod and I were in SUCH a fog listening to the diagnosis.  We failed to hear many of the details.  One of them being that this case has already gone before a board of doctors and they could not agree if this is definitely a tumor.  The mass may also be a bacteria infection, that if ablated could return again requiring further treatment.
Our current doctor wants to be sure that he can go in, remove ALL of the tumor and then be able to test it to be sure of what he is dealing with.  If it is an Osteoid Ostema as we suspect, then no further treatment will be necessary.  But if it is something else, he does not want to destroy it without being able to identify it first.
Clear as mud?

It comes down to being certain.  Yes, there may be another course of action for an Osteoid Osteoma....but if we cannot be 100% certain that that is what this is....then we are confident in taking the most cautious route.
And if that means 4 weeks in a body cast, so be it.
We can do this. 

So our surgery date is set for January 7th.
And I have SUCH a peace about this procedure.
We may still hear from UCSF in time, but unless he has something entirely new which we can consider, we're walking into this surgery thankful that this is treatable.

So back to Emma Nuel.....
Everytime I see that sign I:
a) laugh at the separation of the letters
b) remember the meaning of Emmanuel- God With Us!

He has never left Merrick, and we were never alone in making these decisions.  Whether His voice is audible, or his presence palpable......I know we are not taking this journey blindly.
1 John 4:16
I can know and depend on the love that God has for us!


Joan said...

And HE IS with you through all of this. He knows the outcome already. We just need to have faith and trust in Him. We will keep praying until MJ is pain-free!!

Danielle said...

I will be praying for you, my friend. I love your attitude, and I love your rawness (is that a word?LOL)
I will be praying for Merrick this week, and most definitely on Jan 7. I will be praying for you and your husband too. Being a mommy is so hard. but, the best. :)