Tuesday, January 25, 2011

She gave to us, and wants to give to you! Don't miss out!

I have an amazing friend that has an awesome photography business. We have known each other for like a gazillion years and she has always been very talented! I love her guts!
When all of the craziness happened with Josh, she reached out to us and offered to take our family pictures and to GIVE us, yes I said GIVE us her top package. She also designed our Christmas cards for us (which were beautiful). She has just launched her new blogsite and is offering a to-good-to-be-true giveaway!!! You have to hurry to her website and check it out. You won't be disappointed. She does a great job and I get compliments on the pictures she did of my boys almost 3 years ago ALL THE TIME!! Check it out!
Amy Jo Photography logo

Thursday, January 6, 2011

I am not the quiet type

I thought since I mentioned Josh's MRI was on the 4th, that I better post. I haven't had the greatest week (due to a handful of things) and I hope that won't reflect in tone of this post.
Josh's MRI was on Tuesday morning and then we met with Dr. Cohen and Dr. Coleman at the clinic later that afternoon to discuss Josh's well-being and the scans. We left the office feeling good and confident. The  verdict was another stable month to chalk up to success.
Wednesday morning Josh had an infusion where we received the formal MRI report that stated change in two different areas and that they looked like disease progression. So, I went into survival mode. I started reading all the other reports to compare the wording, compare the jargon, compare the emphasis of previous scans. After finding consistencies in specific phrases and words I was able to gather what was a description of location or what was the name of a part of the brain. I understood well enough to know what the report said: They (the radiologists) believe the tumor to be growing. I was confidant that my first understanding of the report was right.
You better believe I was on the phone dialing the nurses to ask them about it. I told them:
"I am not the quiet type to just wait around for something to happen." 
I told them I didn't want to be naive, that I don't want to be caught off guard, and that I always wanted to hear the absolute truth even if it was ugly.
The nurse assured me that she would have the doctor call me back. Hours passed. No phone call. I called again and left a message but then had to leave. Dr. Cohen called while I was gone. Ugh.
I called and left another message this morning before I had to take Eliza to the doctor. (Poor sick baby) While I was gone the nurse called. I called. Finally later this afternoon I heard from both Dr. Cohen and Dr. Coleman. They agree that the places the radiologist flagged has changed, but feel it is not significant enough to call it tumor progression. They said they don't use that particular series to diagnose progression, and they would just watch it at his next scan in 10 weeks. They couldn't say it was nothing, but felt Josh is "essentially stable." I am now of the opinion that stable and essentially stable have two different meanings.
So there you have it. A bunch of ambiguity and uncertainty. Conflicting reports and a not-so reassurance from the doctors. The positive side is that, at least for now, the doctors feel like it is not progressing, and that is good news.

Sunday, January 2, 2011


This song was posted for me on Facebook by a sweet friend who I have had the privilege of knowing for about 23 years. I can't help but think of our own circumstances. And then of those whom we have met since Josh's diagnosis last year. I was heartbroken to learn that a woman who I looked to as our beacon of hope passed away, and I can't stop thinking about the family who is aching for her now. I can't stop thinking about another couple, (who are the same age as Josh and I) struggling with the same disease and yet who are coping so well, and teaching us.  I can't stop thinking about my friend who I talk to EVERY day who lost her husband about 18 months ago and how she has taught me so much. How strong she is.  How sometimes praying feels ambiguous, but that someone REALLY hears.  How sometimes life seems so unfair, but yet we are all being held in His hands.