Sunday, June 30, 2013

On the Eve of the Brain Dig

Hello!

I want to start out by writing that Kurtis and I are blessed and fortunate to be surrounded by the love and care of so many wonderful people (which, if you are reading this includes you) and the outpouring of support from so many of you has been uplifting and incredibly meaningful.  Thank you for taking the time to write notes, text messages, donate money, share things with others who want/need to know, visiting, hugs, etc. etc. etc.  Each of those small things act as a lantern and when we are able to hang all of those lanterns in the tunnel we're standing in right now, it is possible to see the end.  I don't have, and I don't think I will ever have, the words that are right for expressing the gratitude that we both feel for all of those 'lanterns' - so think of the best words you can and then multiply that by the biggest number you can think of and that will put you somewhere close.

So, tomorrow is the brain dig.  We're both a little rattled if I'm being honest, but I don't think that we would be human if we weren't.  Kurtis' surgery has been moved up to 9am (due to neuro cancellations - not emergency status - stop freaking out) which we are pleased about so we don't have to wait around all day.  Here is a quick rundown of what will be happening tomorrow:

=Before 9...probably around 630...Kurtis will be taken for an MRI to make sure that the computer and surgeon know where to go
=9 am...surgery begins
=1-2pm...surgery should be completed

After surgery, Kurtis will go to the ICU for a few days most likely and then we'll come back to the Neuro unit.  The surgery plan has changed a little bit, so if you want to know about that keep reading...otherwise jump down a paragraph.  There are about five tumors in Kurtis' brain right now.  Three are in a club by the cerebellum on the right side, one is on the cerebellum on the left side, and one is "on his brain" on the left side.  As of this moment, the plan is to remove the clump as well as the tumor "on his brain".  The tumor on the left side cerebellum is very small and buried a little bit more so they will use pinpoint radiation to zap the hell out of that little thing.  I know that it sounds really scary, but the surgeon is top notch and everything will be okay :)

Kurtis won't be up for visitors for a few days at least, so it was really nice that we had a group today - part of Kurtis' family and one of our lacrosse families came by as well as our old cancer doc.  It was a good day full of resting, TV (even though the Rockies lost, Cuddy extended his streak so that was excellent). Perhaps the best thing was that Chauncey got to come and spend the day with us.  He would stay the night, but everything starts so early tomorrow that we sent him back home.   We're now winding down and preparing to sleep!

I'll update more tomorrow.  Keep those positive vibes, thoughts, etc. coming.  Please feel free, as I've said before, to share this with anyone :)

Love,
Liz, Kurtis, and Chauncey

Email notes to: rockieslizard@gmail.com
GoFundMe: http://www.gofundme.com/helpkurtis

Saturday, June 29, 2013

Evening Report!

Greetings and Salutations!

In getting back in the swing of things, you can probably expect more blog posts than are probably necessary, but I know that many of you have questions and this is the best way for us to get out information :)

Today was quite restful for both Kurtis and myself.  There was only one test today, an EEG, which is a brain wave test.  They did that mid-morning - it involved hooking Kurtis up to a bunch of wires on his head and then doing a few things including a memory test, a strobe light test, and then rest with his eyes closed.  Through the cancer "experience" Kurtis has had a lot of testing done, but never an EEG - I asked the tech a lot of questions and got to watch along on the monitor.  They were running this test to check for seizure type activity which they didn't find which is great!

We had visitors, both family and friends, which helped to keep the mood light and cheerful.  To those of you who visited today - THANK YOU! :)  Fortunately, the Rockies played today and we enjoyed spending the afternoon watching them - especially with a great walk-off win!

Tomorrow is more of the same, relaxing and monitoring.  Looks like surgery is tentatively scheduled for around 2pm...I'll update that if it changes!  We met with the neurosurgeon again and he still feels like the surgery should be no big deal.

Thank you to all of you who texted, emailed, and called today.  We are so thankful to have such amazing families as well as such a wonderful collection of friends, coworkers, students, and lacrosse players/families and fellow coaches.  It is so nice to  have heard from all of you and it is so wonderful to know that there are so many of you that care about us.  We're also thankful that our gofundme is now rolling and working - thank you for that initial donation :)

Again my email is rockieslizard@gmail.com - please don't hesitate to send notes to Kurtis there :)

All our love  and another update soon.
Liz, Kurtis, and Chauncey

The Morning Report!

Good Morning!
We already know quite a bit more than we did when I wrote last night, and we've set up a donation page to help with all the fun medical bills so I wanted to get that out :)

Our donation page is through gofundme and you can reach it using it's main link or through the tinyurl.  Please don't feel like you have to help with money - your positive thoughts, good vibes, and love are what we need the most and keeping Kurtis in your thoughts in more than enough.  That said, we learned last time that this 'activity' is expensive and know that for some of you, this feels like a good way to help.  Thank you, thank you, thank you.

Main address: http://www.gofundme.com/helpkurtis
TinyURL: tinyurl.com/helpkurtis

Here is the latest information...

Where we are: MCR -- currently in a much better room! Kurtis is out of the ICU (yes!) and we are now in the neuro room that has a bathroom and Kurtis isn't hooked up to as many beeping, whirring, and buzzing machines which is nice.  He is both able to move around better and sleep more easily and comfortably. If you'd like to come and visit, you can send me a text or email me (rockieslizard@gmail.com) and I can let you know when a good time would be :)

Medical Stuff: We looked at the scans of Kurtis' brain with the help of the neurosurgeon yesterday.  It's a good thing he was there to show us what everything was - really strange pictures that are confusing until you have a frame of reference!  There is a small "clump" of tumors on the right side of Kurtis' cerebellum, a small one on the left side of the cerebellum, and then one on the left side of his brain in the back.  They are small which is a really positive thing.  Although there was a small glimmer of hope yesterday that Kurtis would not need brain surgery, the doctors have decided that the best thing to do is go in and remove the clump of tumors.  This is due to his cancer history and wanting to get those things out.  It is my understanding that there is a "brain/blood" barrier which does not allow all chemo drugs to work in the brain.  Therefore, this option is the smartest for what we're dealing with :)  The surgery will take place on Monday sometime - from what I can tell it looks like the afternoon is what they're aiming for - at MCR.  It should take 3-4 hours and the neurosurgeon seems confident that everything should go smoothly so we are trusting that!

Right now Kurtis is just resting and the weekend should be pretty "quiet" as far as tests, etc. go.  Today he will have a brainwave scan to help assess his risk of seizures, but that is the only test he has to have today (at least for now).  Should be a lot better day for him - much more fun than a 2 hour MRI!

We also met with our oncologist earlier this morning and he went through the treatment plan for the cancer.  Kurtis will start with pinpoint radiation for the tumors in his brain (two on the left side) that they didn't remove.  Then, he will start chemo.  After talking with the doctors at IU, it was decided that we are not in a place where we should be in a clinical trial yet, and there is no need to go to Indy right now which is a relief!  Chemo treatments will be straightforward (once a week) and outpatient so that is another positive.  He also said that the drugs in this chemo mix shouldn't make Kurtis as sick as some of the other chemo drugs he has had in the past - hooray!


THANK YOU for all the kind words, facebook posts,  text messages, emails, etc.  They are fantastic and have helped to keep our spirits up! :)

I didn't write this last night I don't think, but please feel free to share this blog with anyone you'd like - it's not an invite only club and the more positive energy we have flowing Kurtis' way, the better.

Love,
Liz, Kurtis, and Chauncey


Friday, June 28, 2013

Back on the Carousel

Good Evening -

Although writing in this blog the first trip around the cancer carousel served both as a way for us to pass on information on to those who care and as a therapy of sorts, I didn't really miss it that much.  I mean, there are positives to working on your writing skills, spelling, etc. but I'd prefer to attack that in a different venue.

Bad news is, the blog is back.  We're back.  Back on the carousel.

Over the last several days, Kurtis has been suffering from some pretty strange and severe headaches.  Yesterday, I eventually called our cancer doc and it was decided that we needed to make our way to urgent care.  After some tests there, we were sent to the ER where they did a head CT and discovered some masses in Kurtis' brain.  So far, we don't know a lot...but we do know enough to fire out our first update.

As it stands this is what we know:
-Kurtis has four tumors in his brain. There are three on the right side on/near his cerebellum and one on the left side above the cerebellum in the actual "brain" part (look at my science knowledge!).  

-The neurosurgeon and neurologist both described the tumors as "small" - we don't know exactly how big that is, but if the neuro guys are calling it small, I'm good with it.
-It looks like Kurtis will be having brain surgery, most likely on Monday.  They will be removing some of the tumors near his cerebellum.  After that, they will use pinpoint radiation to get rid of the remaining tumors.
-Kurtis also has one or more tumors that have started to grow in his lungs ... they may be cancerous or teratoma (benign tumor that doesn't respond to chemo/radiation and has to be surgically removed) due to his past history.
-One of Kurtis' lungs also had fluid in it.  Today, they drained that doing a fancy procedure that I both don't remember the name of and have no chance of spelling -  so look it up or ask someone who is a doctor if you really need to know that name.  Seriously.  I think it starts with T.  He feels better now to have that fluid out and it doesn't sound like the procedure was as painful as you might imagine which is positive.
-Currently, we are in the ICU but later tonight we will be moved to a room - either to oncology or neurology
-Kurtis isn't feeling the possible impacts of the pressure on different parts in a huge way.  He is having headaches and he has a small problem with fine motor skills (trouble signing his name) and occasional slight slurred speech...but other than those things, he isn't too super

This news has been quite a shock to us as I am sure it is to you if you're reading this!  Kurtis' last clean scan was in April and everything has been clear for a long time.  I know that the first question out of your mouth or in your head will be "what can we do to help?"  My answer right now is -- we don't know.  We're going to need help, I know that from experience.  But, we're learning about what this ride around the carousel is going to look like.  As soon as I know what we need, I promise I will ask.  We may need some food help and/or some help with Chauncey.  Until then we can always use positive vibes and love.

If you want to send Kurtis a note, I know he would appreciate it.  The best way to do this is to send me an email (rockieslizard@gmail.com) - and I'll get it read to him :)

I'll put more information here as I get it.

Love to all -