Thursday, July 24, 2014

Kicking about half the Brain Tumor to the Curb. ;-)

Time for another update!  

It's been a busy week for medical appointments and news.  Latest CT shows the 5 tumors in Mark's body are RELATIVELY stable when looking at the overall picture.  There was only one tumor with significant growth and it was one of the ones in the liver.  However, bloodwork shows the liver function to be normal at present.  All the bloodwork looked good for someone who just underwent radiation.

The MRI showed the brain tumor has SHRUNK.  YES...this is a PRAISE GOD, newsworthy event for our immediate longevity outlook!!!  :-)  Mark will not likely expire today or tomorrow.  Yes, that's a little bit of humor.  I realize it's not a humorous situation but sometimes the only way to get through these things is to keep it as light as possible. 

There is a clinical trial that we are currently researching (when I say WE, I mean the doctors).  Here's the link for those that want to read about it:  Clinical Trial Link ~ Selumetinib
This would be to treat the other 5 tumors in Mark's body (lung, liver (2), gallbladder, & adrenal gland).  He would have to be off of the steroids for an entire month before they would even consider him a candidate.  As of today's radiologist appointment we are going to be tapering off on the steroids to every other day for 2 weeks then to NONE.  This will be okay as long as Mark has no neurological symptoms from tapering off OR does not begin to get headaches again.  So, it's a wait and see process.  We are also getting another opinion from a top Ocular Melanoma doctor in Pennsylvania.  He may know of some other life prolonging possibilities that our doctors here have not heard of yet.  We shall see.  Some of these new drugs require that your cells have certain mutations so there are labs being done right now to see if Mark's are compatible to this trial that's currently running.  (also, I'm just talking in laymen's terms to the best of my ability to recall what the doctors have said...I may not have some of the terminology right! disclaimer of the day!).

Mark DOES have some memory issues right now...recalling things he should know (not super important things like who his children are, ha ha!).  He also was not able to walk heel to toe without balance issues in the office today.  He says it's his flip flops but I will be keeping a close watch on his balance in the near future.  He is still very fatigued almost all of the time and has lost most of his muscle mass, which is very discouraging to him as he would like to be building that back up and wants more energy.  He is hoping the doctor will approve some physical therapy soon so he can begin improving his physical condition some, if that's possible.  

We are working through the mass of paperwork involving disability...looking at long term and social security disability in the future.  We were approved for short term but it's a very small amount compared to what we were making before Mark could no longer work.  Your donations & prayers have made ALL the difference in our ability to pay our bills and live life!  THANK YOU, as always.  We are living in a state of continual gratefulness to God and to each of you.  We are very aware of our need and where our provision comes from...and we are filled with awe on a regular basis at the outpouring of love and prayers and financial donations.

Our future is uncertain... we still do this one day at a time and we know that every single day is a gift.  We are trying to be very responsible and to cover all our bases.  HOME base is always PRAYER and GRATITUDE.  

Thank you for your continued prayers!!!  :-) 

Wednesday, July 9, 2014

Updates...Family and Cancer

It's been a bit of time since I last updated so here I am again!

I'll start with the cancer news:

Mark finished his radiation treatments and we will get new MRI scans at the end of July.  We have an appointment on July 30th to see the results of the treatment.  Praying for shrinkage, stoppage, or complete obliteration of the big tumor in his brain.  One of the things I think is so amazing is how the doctors are amazed at Mark's condition.  He's doing miraculously (yes...a miracle) well for a guy with a tumor the size and location of his.  So, as I've said before and I'll say again, Mark is a walking, talking, miracle!

We saw his regular oncologist today to discuss the 5 other tumors in his body and treatment options.  Realize, of course, that there are no CURES for this cancer, just possibilities of a little more time...UNLESS God miraculously heals Mark.  Anyhow, there is a trial going on right now that Mark will qualify for.  The requirements are that he has two metastatic ocular melanoma lesions (tumors) in his liver, of a certain size, which he does.  The trial is for targeted radiation along with the immunotherapy (Ipilimumab).  They will do targeted radiation on ONE of the liver tumors and not the other, thus the trial...all while doing the 4 infusions of Ipi, the immunotherapy drug.  Now, we don't know 100% if he will do this yet or not.  He is having new bloodwork and CT scans done THIS week and by Monday (July 14th) Dr. Haque, his local oncologist, will have everything he needs to see if Mark will be accepted into the study.  If he is accepted, some or all of it will have to be done in Seattle.  The real kicker is cost!  IF the trial will pay for the drug it would be totally exciting.  Ipilimumab is one of the most expensive cancer treatments available.  Unfortunately for Mark, his particular tumors will not respond to any of the "usual" treatments based on them testing negatively for some marker.  I can't remember all the details on that.  The expense is over 100,000.00 dollars.  YIKES!!!  And that is just for the drug itself!  So, if the trial will pay for it or part of it, it would be a win win for us.  They may also pay for travel expenses but we will find out all the details next week.  Asking for prayers that it will be totally provided for!!!  :-)

Mark and my thought on treatments at this point in the disease progression is just to buy time.  Time is so precious and you cannot put a monetary value on that.  Every day he is here is another day he gets to speak into the lives of our children and be their papa.  We want as many of those days as we can get.

Still we pray for a miracle every day.  Mark spends so much time in the Word and in prayer when he's in bed resting.   He has such a positive attitude and is so grateful for all the support and prayers we are receiving from all over!!  We feel so much LOVE from all of you.

NOW the Family news:

Mark's Dad flew back to Germany & CZ Rep. on the 1st of July.  We had a nice 2 weeks with him.  I know that Mark had a few good times of chatting over a meal with his Dad and that was a true blessing.

We took a trip to the Seattle area to be with family for the 4th of July.  We stayed at my Mom's and had a great time.  Spent the 4th at my brother's house with his family and we all had a fabulous time. MANY fireworks were blasted into oblivion on his culdesac!  It was beautiful... and exhausting for the parents!  Mark stayed at Mom's most of the time, resting.  He did make it to the Patton house for one meal.  Then He and I got to go on a movie and lunch date.  We saw AMERICA and it was really good.  We traveled home on Monday and stopped at Snoqualamie Falls.  Obviously we didn't do any hiking but Mark was able to walk around on the upper paths and there were lots of benches for resting.  I got a few good photos of Mark and the kids.  We had a great family time and made some memories.  The ride home was really nice and we took our time.  We came home and all of our animals and plants/garden were still alive, thanks to Mark's Mom who takes care of those things when we travel!  What a blessing to have someone who can do all that for you.  It's no easy task:  2 big dogs, chickens, rabbits, hamster, gerbils, koi and pond, fish tank, betta tanks in each kid room, flower beds, garden beds, hanging baskets, oh my!  It's a lot to keep it all alive, especially when the temps are nearing 100 or above!!

After the trip Mark was thoroughly WIPED out.  He had his first headache since he's been on the steroids. I was pretty concerned.  He was in bed for most of the day feeilng very unwell but he rallied by evening enough to sit out and watch the kids that was a huge relief!  Today has been a good day.

That's pretty much it for this go-round!  Just the facts.  I will post more soon.  Still keeping my journal and keeping up on the emotional and spiritual side of this journey.  The Lord has been faithful and is really helping us through this time in so many ways...through our friends and family, through the prayers, through the giving, through the LOVE!  When I am most troubled is when I feel His presence the closest.  It's so amazing, this love He has for us.

***I was going to post photos in this post but I'm having trouble with my cloud and picasa and general issues getting my photos from my phone to the computer.  There must be some setting that's been changed or something so I will work on that later and post them then!  Geeesh.  Sometimes these things are far more difficult than they need to be.