From: Timko, Terry M
Sent: Tuesday, June 07, 2016 4:49 PM
Subject: Maura Update June 6th

The word for today is flexible.  Sorry to be so matter of fact but that is the mode that I am in right now.  I should note that Maura’s symptoms appear to be getting worse. It could be stress and all the commotion in our lives right now.

After a lot of effort, we finally have appointments and testing schedule at the Mayo Clinic Monday and Tuesday next week with biopsy/surgery likely Wednesday or Thursday.   Our plan is to fly out Saturday PM and think we will be gone about a week.  The Neurologist said she would be in the hospital for 2 days post biopsy, longer if they decide to remove something more.

Today we spoke with Maura’s ENT (the surgeon we saw Friday and who removed the fungal ball from her sinus in Dec). The nasal biopsy he did Friday came back negative for cancer.  He is convinced this is a fungal infection and we should have a biopsy ASAP - not wait till next week.  He called a friend at Mayfield neurosurgery locally today and shared her imaging. The doctor at Mayfield said he would be willing to do a biopsy.  So I reached out to her GP and Neurologist for their opinion.  They said get the biopsy at Mayfield and if it is something complex go to Mayo next week.  Originally they did not think Mayfield would be willing to do the biopsy.  We have a 9AM consult/appointment with the Surgeon at Mayfield tomorrow.

Now, according to everything the doctors have said and everything I have read, you don’t get fungus like this in a person who does not have a seriously compromised immune system (like chemo, AIDS, … which is not the case).  She does have an slight known immunodeficiency and the 24 (not 18) blood tests from last week are mostly regarding her immune system.  10 of the 24 results are back and are negative.

So we may have a biopsy locally this week.  We may go to Mayo next week.  We may not go to Mayo next week.  Mayo may get delayed a couple days or a week.  It may be a fungus. It may not be a fungus at all… just taking things one at a time.

For those of you that have been asking how you can help now is the time.  Our 3 teen boys are pretty capable but could use some support with driving and meals, as well as checking up on.  Please note it is just 3 of them and 1 is a vegan.  They don’t need a ton of food, it will just grow mold (a fungus J ) in the fridge.  My mom (thanks mom) may come down for part of this to support but it is way too much for her (sorry mom).  They will have the CrazyFathers mailing and phone list in case of emergencies.

I’m going to give Jeff and Janet 2 weeks’ worth of driving needs as well as recommendations for meals.  There is a lot of driving like 3 round trips per day and we are cutting back.  If you want to help us please contact Janet & Jeff and they will coordinate {contact info deleted}.  Thanks J & J.

For the vegans on this distribution please connect with Josh {contact info deleted} directly ccing Janet and Jeff.  If he got a couple of multiday meals he could prep that would be nice.  I’m loading the fridge up with veggies and Trader Joe’s vegetarian meals for him.  He would love to know more vegan things to make.

Daniel is working 9 to 5 so can’t drive his brothers during the day – they still have school/tutoring as well as appts and swimming. Their SoS conference is June 20-24.  They can do Uber, but that is a lot of Uber.

{contact info deleted}

They all respond best to text vs. phone or email

Terry Timko