Monday, September 2, 2013

Dear Friends and Family,
Wow!  The summer has come and GONE!  I’m still in amazement (sure to only increase!) at how fast the seasons are flying by these days!  Last you heard from us, it was early June and Dan had just had radiation on 10 small tumors in his brain.

Shortly after that, we saw his regular oncologist and he began Avastin treatments again.  [Avastin was the chemo that he was on for 2 years (2009 and 2010) which eventually suppressed the disease, giving him a remission.  After 2 years on that drug, it began to take a toll on his one good kidney and raised his blood pressure, so they had to take him off of it.]

There is no guarantee that Avastin will be as effective at suppressing the disease this time as it was the first time, but we are hopeful.  The side effects are minimal and Dan is able to enjoy a very good quality of life while taking this.  He receives it by IV once every 2 weeks.  The first time he was on this drug, it was through a clinical trial.  That meant that when we were in NY, he needed to come back to Cincinnati every 2 weeks to receive the treatment b/c of all the documentation that was required for the clinical trial.  Now that it has been approved for treatment for kidney cancer, he is able to receive it here in NY while we are here for the summer.  That has been a huge blessing!

SO....after the initial treatment of Avastin, we packed up our 3 grandchildren and headed to NY.  I’ll get into the summer goings-on later after I finish up the medical update.

In Aug., it was time for Dan’s regular whole body CT scan and bone scan to be done, as well as the MRI of his brain to check on the effectiveness of that last radiation treatment as well as for possible new tumors.  He also had finally gotten an appointment with a back specialist to see if there were anything that could be done to help relieve his back pain.  He went through a grueling two days of tests and doctor’s visits.  

The CT scan and bone scan showed no visible progression in the disease in the body (below the head), PRAISE GOD!  To be completely honest, I was hoping they would see improvement...a decrease, but the only things showing up right now are in the bones and I am just now remembering that the only way they can distinguish between healed or active spots is by seeing an increase in size.  So....there actually COULD be improvement that we cannot SEE.  

When they did the MRI of the brain, they found 2 new small tumors and one area that they have some questions about.  We are PRAISING GOD for only 2 new tumors!!  That is a WHOLE lot better than 10!!  Of course, when they do the high definition CT scan to merge with the MRI in order to plot out the exact locations, they often find one or two more...but even that would be a huge improvement!!  We are hoping that with more time on AVASTIN that even this will improve.

The back specialist said that surgery was not an option.  The cause of his pain is related to the compression fractures and the failed treatment he had several years ago.  As I understand it, the vertebrae are now tilted in such a way that they irritate a nerve causing it to be inflamed.  The back specialist sent Dan to a pain specialist who did an epidural.  The effectiveness can last anywhere from a few days to a year.  

He did get some relief but it seems to be ebbing away quickly.  He was also given some other medications to try for pain relief that hopefully will allow him to get by without taking narcotics, at least in the daytime, so he can continue to drive.  It might take a few weeks of trial and error to figure out the best combination, but we are hopeful.

We will be returning to Cincinnati in mid Sept. for the next radiation treatment.  

I think that covers all that we know right now.  Needless to say, we are so thankful for God’s mercy and grace that has been poured out for us.  There have been and still are, so many, many lessons we are learning along the way.  Lessons like the importance of “remembering”.  God instructed Israel to “REMEMBER” many times....for them to remember all the miraculous interventions he did throughout their history.  I used to wonder, “Why would he NEED to tell them that?  SURELY they would never forget!”  And yet in our own experience on this journey...with all the marvelous things God has done for us....we forget.  With many new challenges on this journey,  the emotions and fears can resurface and you would think we had never experienced God’s great mercy and love.  When that happens, one of the best things about having done this blog is that we can go back and reread what has happened and how amazingly God has provided over the last 6 years.  We then take those fearful thoughts captive ( 2 Corinthians 10:5).  

We continue to be exceedingly grateful for all the prayers and cards and emails...the LOVE that all of you give and give.  Thank you so much!

OK..I promised that I’d add the fun stuff at the for those who are interested in a synopsis of our summer, here we go!

Tom and Karla were not able to join us in NY this summer and we missed having them, but we were blessed to have the grandchildren with us for a time.  They spent the night with us in Cincinnati before we drove here so that we could leave bright ( was still pretty dark at 5:30 a.m.) and early the next day.   

We drove out here on a Wed.  The girls (Morgan and Emma) were going to Tapawingo that Sunday.  Morgan was going for one week;  Emma was staying for two.  Matthew stayed with Mimi and PopPop the whole 2 1/2 weeks!  He kept PopPop really busy!

Each morning we would go to camp.  Dan and I would attend chapel and Matthew would go to the children’s chapel (sort of like Vacation Bible School)  He was a bit unsure if he really wanted to go at first but once there he LOVED it!  As a matter of fact, the second week, he decided to go to “Chapter 2” as well.  That was the hour and half after the children’s program that was more recreation.  But after that, it was PopPop’s turn to entertain!  There was putt-putt and shuffleboard and tennis and arcade games....and then you started all over again!  Whew!! They came home late and HUNGRY!!

Morgan had a great time at Tapawingo.  She kinda wished she had signed up for 2 weeks but she had been unsure about what time demands would be for her club volleyball and they have to register for Tapawingo so early (like in November!) she was being careful.  Emma LOVED it, of course, and even got to celebrate her birthday there.  We made sure she got well celebrated at the cabin, too

My sister from Taiwan, Nancy, was able to be here for 4 weeks.   There was a lot going on and yet I still think she was able to get some rest and relaxation squeezed in.

The summer was full of more family and lots of friends visiting, WONDERFUL speakers at Camp of the Woods, reuniting with camp friends and our New York friends from neighborhood and church....and it even included a trip to the Upper Peninsula of Michigan for Family Camp with our Ohio Church Family.

We have yet to do our first kayak trip...NEED to get on that before the weather turns REALLY cold!  But we are so grateful the wonderful fellowship we have already had!

We are so thankful for the wonderful times we have had, the enjoyment of children, grandchildren, friends and extended family, the blessings of Tapawingo, Camp of the Woods, both of our "home" churches and Cedar Campus….blessings too numerous to count!!

Below are some snapshots of our summer blessings :-)
Morgan, just chillin' on the deck with Cocoa

Having fun fishing off the dock

  With all the windy days and rainy days, it was hard getting in a campfire, but somehow, we squeezed it in :-)  I know it doesn't look like much of a fire....but it was PERFECT for roasting marshmallows..really!  

Emma and Matthew had a blast jumping off the boat even though it was pretty chilly that day!

Sparklers made the campfire even more fun!

And of course, S'mores are a must...even amid the smoke!

Loons are one of our favorite sights (and sounds) on the lake

Two of my sisters, Nancy and Susan, relaxing on the deck.

Heading out onto Lake Pleasant one evening to watch the 4th of July Fireworks

Waiting patiently (or not so patiently) for the fireworks to begin.

Emma, our little gymnast.

 Cocoa loves the cabin too.

Enjoying Mimi's French Toast and Bacon Breakfast.

After chapel, it is time for Sticky Buns at The TeePee!

A balloon and cotton candy at Camp of the Wood's Monday night Carnival.  What more could a boy ask for?

Matthew greeting Morgan on her return from Tapawingo.  I think he might have missed his big sister a little.  :-)

This was a serious Dominos competition!

Mimi was teaching Morgan how to bake bread.  I think she's got the hang of it!

Morgan's efforts paid off.  They look pretty good, but they tasted even better.  YUM!

In our ever-continuing attempts to eat more "healthily", we celebrated sisters, Nancy's and Sue's 4th of July birthdays, brother Jim's 7th of July birthday and sister-in-law Alyca's July 22nd birthday with Black Bean Brownies.  They tasted a lot better than they sound and almost as good as they look.

Although Meg was on vacation up here, she couldn't take a break from training for The LOBSTERMAN Triathlon this Sept. 14th.  Here she is getting ready to swim across the lake and back with mom accompanying in a kayak to protect from boaters.

Another gorgeous evening at the lake.

This is Tibbits Auditorium where we spent most of our mornings praising God and hearing wonderful Bible Teachers.

Watching a sailing yacht go through the locks at Sault Ste. Marie.

Cedar Campus was the location for ECC's Family Camp in the upper peninsula of Michigan.

The sunrise view in front of our cabin at Family Camp this year.

1 comment:

  1. Thank you for sharing beautiful memories and pictures and thanking God for his blessings.