From: Timko, Terry M
Sent: Saturday, August 27, 2016 6:15 PM
Subject: Maura Update - Sunday August 28th

Friends,

It has been an eventful 3 weeks since the last update.  I was planning a thoughtful and encouraging post about what we have learned and seen on this journey, but the events of the past week intervened.

We had quite a bit of drama this week.  For the past month we have been in a wrestling match with swelling in Maura’s brain, trying to manage the resulting symptoms to a safe and tolerable level.  To paraphrase one of her doctors before we started the treatment “There is going to be a battle going on in your brain between the tumors and the treatment. This is going to lead to edema, or swelling, in your brain”.  We lost the latest round of the wrestling match.

Maura ended up in the ER Wednesday and is now in the Neuro-ICU. From the CT and MRI we could see that the swelling was greater than our last trip to the ER deflecting the centerline of her brain 8mm and the pressure causing her brain to prolapse at the base.  A dangerous level of swelling.  Dangerous from the standpoint of life threatening and brain damage.  They treated her with high dose steroids alongside diuretics, hypertonic IV solution (to raise her sodium level) and stopped fluid intake to dry her out.  She is in the Neuro ICU. Her condition is no longer life threatening but her cognition, speech, memory and mobility have be impacted.

She responded well to treatment Wed to Thurs: her headache went away, her speech cognition and mobility improved ~60% (it was very bad), her long term memory a little better but short term memory did not improve.  Friday her speech and cognition worsened, mobility improved a bit and memory was about the same.  Today all of her symptoms improved but her cognition has got to the level that she is aware of her predicament and a bit scared and sad.

{I had forgotten much about this hospital stay and how out of it Maura was until re-reading this after she died.  I was really scared that this was how she was going to have to live out the rest of her days.  I am so thankful she recovered and we all got the pleasure of her company in the months that followed, I also remember fondly her cousins Ed and Maryellen visiting at the back end of this stay}

They are going to continue to treat her swelling aggressively over the weekend and monitor her symptoms.  There is another longer acting drug which they can use and we will make that decision Monday.  There are several reasons we don’t want to use this other drug from a side effect and future cancer treatment perspective.

Right now we don’t know if there was any permanent brain injury from this incident or if she will return to normal once the swelling goes down and her brain has a chance to heal – this can take a while – not exactly like a bad concussion but not a bad way for you to think about it.  There is a potential that all her symptoms are due to the swelling and once that is addressed and she is off the immunotherapy (the primary reason for the swelling) her symptoms will go away and she will be back to where she was 8 weeks ago – which is nearly normal.

On the bright side there is a strong correlation between swelling from the immunotherapy and the effectiveness of it against the cancer.  So she has already had more cancer fighting than the standard treatment of radiation and chemo which we competed 18 days ago.  We are stopping the immunotherapy for now and will re assess in a couple weeks – they may allow us to continue at a lower dose and/or with steroids outside of the clinical trial.  Steroids blunt the effect of the immunotherapy.

That said the immediate concern is brain injury.  So this is where I would ask that you pray.  I’ll hold off on the rest of the story as I want to get back to her.  God is still good.

Just a couple of housekeeping issues:

If you are forwarding this to folks or you have had these updates forwarded to you please email me your name and contact info and I’ll add you to one of the distribution list.  We would like to know who were are communicating with.  Thanks.

Josh & Ethan have gone back to school (University of Cincinnati as HS Junior & Seniors – Mom and Dad so proud) and activities are already ramping up.  They are doing very well commuting by bike and bus but still have a lot of driving needs which are not practical or served by public transportation in Cincinnati.  I thought I could cover this as I am back in town but have been otherwise distracted.  If you are local and can pick up some trips or would like to make a contribution to their “Uber fund”, they would greatly appreciate it.  Contact Jeff Holland (cced) if you are interested.  He has an web site where you can sign up.  One of the hardest is Blue Ash to Anderson midafternoon 2 to 4 days a week.  For those of you that have already driven them thank you so much.  We feel it is really important that they stay plugged into their activities in this season as this is their community and support system.

p.s. The boys would also love some gift cards for food because they are now out of the house a lot (skyline, chipotle, BW3, Subway, fusion, larosas, …)

Terry Timko