Jeff talked to Dr. Cunningham today. As it turns out, the expert we posted about earlier is not the guy that Cunningham wanted to speak with. He went through his records and said that the man to talk to is a Dr. L. Lyndon Key, Jr. who is part of a crack research team specializing in osteopetrosis and osteoclast issues.
Cunningham has not yet spoken with Dr. Key or the team, but plans to in the next day or two. He mentioned that Zoe's pending skull surgery could provide some bone samples for the team, who would likely jump at the chance to study them, and consequently have a vested interest in participating in her treatment.
Again, extremely rare disease.
It's odd to think that Zoe's potential condition is one that would make her more than just a patient--she would be a research subject as well. Whatever gets the job done.
I don't believe we mentioned that Zoe's first consultation with Seattle Cancer Care Alliance is September 10th. They kind of hemmed and hawed when they heard that her diagnosis was not confirmed yet. But, they scheduled it anyway. If the blood test doesn't come back in time the story may change.
The weight of the situation hits us in waves. Many times I will just be stopped in my tracks by a wall of fear and anticipatory grief. I have to work hard not to focus on worst case scenarios.
And, what is up with so many things falling apart right now? Within the last two weeks, aside from the Zoe news, our phone lines got all crossed (Jeff had to spend much time under the house to figure that out), the shower self-destructed (we now can take only baths), the truck broke down in the middle of an intersection (it took some problem solving to figure out the issue--thank goodness my hubby is handy--the part is on the way), the garage door fasteners dissolved (can't open it now), and I have broken out with a mystery rash that has me looking like I have the measles on my upper body (allergic reaction, or hot tub infection?? The doc at least says it's not contagious). It's all hitting us so fast that it's actually become a bit comic.
This is not how we operate! We are not tragedy victims!
And I'd certainly like to think that we don't require the sledgehammer approach to learning whatever lessons we are supposed to be learning right now.
But, evidently, we do.Okay, I surrender.
Can I please just stop itching?
2 comments:
Oh my!!! Rashes and anything skin are definitely related/caused/exacerbated by stress...which I'm sure I don't need to tell you guys. (I had horrible stomach issues that had me SURE I had Crohn's disease...)
Now that the shower is out, long hot baths with good music and candles? :) (((HUGS)))
I can finally leave a comment and I don't have a good one to leave... Hmph.
Thinking of you and looking forward to reading good news on the blog.
Give little Zenbaby a hug for me!
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