Hello everyone,

Today is the last day of 2009.  The last day of the decade.  The last post I will be writing on David’s blog.

I wanted to take a moment and reflect on David and the past year and thank everyone who has touched our lives.

2009 was certainly a difficult year for our family and we are glad to see it go.  I thank God for the 29 years I had with David and see him daily in his children.  The sense of humor, willing smile, ability to deal with difficulties.  He was  a man who loved his family and took his role as head of the household seriously.  He lived through his illness with grace and beauty, not complaining nor feeling sorry for himself.  Our love for him will never die, it will just live on in a different way.

I also want to take this time to thank all of you.  We have been touched in so many ways by so many people.  Whether it was in a tiny way or monumental, we are thankful for each and every one of you.  David’s family were there for him from the moment they heard of his illness.  His mom who traveled with us, to and from Iowa City where David received treatments and surgery and also spent many hours keeping him company while getting treatment here in town.  His sisters Linda and Ellen, along with our good friends Brian, Marianne, Lexie and Mark who were so willing to work tirelessly for David’s amazingly well attended and successful benefit.  All the family and friends who were also willing to work so hard during the benefit.  We could not have done it without you.  To all of you who visited him so often, I thank you for that.  I know he appreciated your visits and it helped lift up his spirits.

Following David’s death, we received so many cards.  We thank you for the time you took to write such lovely sentiments … words that touched us deeply.  Also, so many have been so generous and we are very thankful for that.

I believe 2010 will be a year of beginnings.  Beginning to learn to live without David.  Finding our way out of the fog and into something else.  Learning to navigate our way through this grief, each day being different with its ups and downs.

And then, I always go back full circle to all of you.  You have been there for us throughout it all, and we really do appreciate it.  Your ongoing, loving support really does make a difference, even if we are unable to show our true appreciation right now.  Please know that every large or small thing done by you is a show of support and we use it to hold us up through the hardest days, and unfortunately I don’t think the hardest days are yet done.  As I write this, I cry tears of sadness, longing, and joy.  Sadness and longing for David and how much I miss him.  Joy for all of you who are there for my family and me as we live through missing David.

Thank you all.  May God Bless you, each and every one of you, with health, happiness and the love of family and friends in the year 2010 and beyond.  My prayer for you is that God will wrap His arms around you as you have done for us, giving you what He has given us.

with all my love,

Connie

Today I post with a heavy heart.  David is gone and he is finally pain free.  We are so happy for him but mourn his loss.  Charlie, Angela, Elisabeth, John and I, along with his whole family, feel his loss deeply.

The last 17 months have been difficult.  David stoically fought his battle with beauty and grace and we are so proud of him.

Maybe someday I will be able to post about the months of August and September.  Right now, this is all I have.  I am sorry not to be able to do more.  It is just too painful, but I am sure you will understand.

Thank you all for your loving, ongoing support. We are uplifted by the love of those around us.  God truly is good to bring so many loving people into our lives who care for us so beautifully.

With all my love,

Connie

Hello,

Just a brief post to let you know that David was transferred to Trillium Woods Faith Hospice this afternoon.   Trillium Woods address and phone number are:  8214 Pfeiffer Farms Drive, SW, Byron Center, MI 49315  616-356-4820.  He is in room number 2303.   Trillium Woods is a lovely facility.

To make it easier for you if you are planning to visit David, I have included a link to the website which includes a map:

http://www.faithhospicecare.org/trillium.htm

Thank you for your continuing prayers.

Love, Connie

I ask that you please continue praying for strength as these days go on.   I will post more later when I am able.

Thank you all for your continuing, loving support.

Love, Connie

So here I sit in David’s room at the Lack’s Cancer Center.  The last week has been a difficult one and I thank everyone who has come to visit.  David’s mom, Carol has been here almost non-stop.  So many have come by to visit and  even though David might sleep a lot while you are here, I know he enjoys seeing you and he appreciates the time and effort you have taken to come up and see him.

Each day blurs into the next.  David’s condition has remained virtually the same.  He has pain in his abdomen.  He sleeps a lot.  He is weak.  He is not eating a ton, although he WANTS to eat…when he does find something that sounds moderately good, he fills up fast.  Cottage cheese and peaches, chocolate milkshakes, soup and raw milk from the farm are his main foods of choice.

Dr. Brinker has told us twice now that the x-rays and scans have shown that the tumors have shrunk.  We are so thankful for that.  The nurses have been so amazing.  They are kind and caring and loving and we truly appreciate them for all they do for David.

Please keep David in your prayers.  Pray that he regains  his appetite so he will get stronger.  Pray for healing.

I am so thankful to everyone who has been there for me.  So many are there with their words of wisdom and thoughts and it truly is so helpful.  Thank you for all your kind words and prayers.

Love, Connie

Hello!

Wow!  When things happen, they happen fast!

Life was just moving along.  David started to have some “stomach” pain Monday so we contacted Dr. Brinker who set up a CT scan for that day.  We got ourselves together and headed down to St. Mary’s to get the scan.  One of the stipulations that David had that day was that he said he would NOT drink the “chalky” contrast stuff.  He said he felt bad enough without drinking that “junk” and feeling worse.  They told him that would be fine.  We got to St. Mary’s and signed in, waited our turn, and when they called his name followed the nurse back.  As we headed down the hall, she said they would be using the intravenous contrast.  He started saying “no! no! no way!”  Well, that was it!  We headed out without getting the scan.  For those of you who know me, I was furious, to say the least.  Speechless would be what some would be, but of course, I am rarely speechless.  (I’m not sure he knew what hit him!) WOW!

So home we went.  Life moved along (without a lot of words out of this Greek woman).  He didn’t say much how he was feeling.  Tuesday night, we didn’t get much sleep.  David was agitated and out of sorts and did not sleep very much.  That means I didn’t sleep either.  I finally got up around 3:30 or 4 and headed out to the living room.  I think with me gone, he finally was able to sleep, which was a good thing.  Later, I went to work and he did his new normal.  When I got home around 5:45, he was having much trouble breathing.  Short of breath and labored.  I asked him what he wanted to do.  He said, let’s head to the ER.  So, that’s what we did.  We got to St. Mary’s and were ushered in immediately.  Shortness of breath is grave and they take it seriously.  Our nurse, Bob was amazing.  He was on top of everything immediately and they got him hooked up to monitors and worked to stabilize him.

We spent the next 4 hours in ER.  He got an x-ray which didn’t show much.  They were able to slow down his respiration a bit, but not enough to make him comfortable.  After all that time, the decision was made to admit him.  When admitted, they took him for a CT scan (yes, he had to have it anyway, and he didn’t complain at all!!!) That of course is what showed the pulmonary embolism in one lung.  SCARY!  They immediately started him on blood thinners and also gave him fluids.  Today because his hemoglobin was down again, they gave him 2 more pints of blood. I guess it’s been a very interesting last couple of days, and I would love to get back to boring!

At this time, they are not saying when he will be released.  I guess when his respiration is normal and they see that the clot is gone.  They may decide to keep him on the blood thinners to avoid this happening again.  They are now talking about having Physical and/or Occupational Therapists come here and work with him a couple of times a week.  I am all for that.  The stronger he gets the faster he will heal.

So as you see this week has been a not very fun week!  Please pray the blood clot dissolves and David can come home.  Praise God for the care from the nursing staff at St. Mary’s.  They are loving caring people who take great care of David.  We are so thankful for them!

Thank you so much for your kind and loving words and of course for your prayers for David.

Love, Connie

Hello,

As I post, David is spending the day at Lack’s receiving blood.  The last couple of weeks have seen slight improvements, but not as many as I had hoped to see.  David is still weak, tired and unsteady.

Last week Monday, David had an appointment with Dr. Brinker at the Lack’s Cancer Center.  His appointment was for 9:30 and was just a check up which we thought would not be lengthy.  We we got in to see the doctor, he did his usual thing.  Listen to heart, lungs, etc.  Also, he checks his legs to see if there is swelling.  He did notice swelling in David’s left leg, so he ordered an ultrasound to see if possibly there was a blood clot.  He also, while listening to David’s lungs, thought he heard some fluid in one lung.  He then ordered a chest X-ray to check that.  The one hour appointment stretched into 6 1/2 hours and when all was said and done, we arrived home around 4:00!  The ultrasound did not show any sign of a clot so that was good news.  Even though Dr. Brinker asked for the results of the X-ray STAT, and we waited around for those results, they did not come in so home we went. The next morning, Dr. Brinker called us at home to tell us that the X-ray showed that there was not fluid in the lungs, but that he could see from that lowly X-ray that the tumors HAVE SHRUNK!  Thank God!  That is such encouraging and fantastic news!  Thank God!

As he has since before our trip to Basel, David has been home recuperating and trying his best to get his strength up.  He is beginning to eat more each day, even ASKING for food, that makes this Greek lady super-happy.

Yesterday, his mom picked David up and took him to Lack’s for a blood draw to determine his hemoglobin levels.  Low levels are a typical side effect for the Y90 treatment, and one of the follow-ups is having blood drawn every 2 weeks.  Following that, they went home and as David headed up the front steps, his foot missed the step and over he went in the (very weedy) flower bed!  YOUCH!  He hit his hip on a rock, but fortunately no serious damage done!  While all this was going on, I was receiving a call from the cancer center telling me that his hemoglobin levels were at just about 7.  The normal range for a man is 13-17, so 7 is considered very low.  That explains why he has had trouble breathing, gets short of breath when he walks and generally has been feeling exhausted!  So, now you see why he is at Lack’s getting blood.  I hope and pray that this will be the thing to start getting him more energy and being able to do a bit more.

Happy Birthday, David!

Today is David’s birthday.  It’s not a day like other days.  Usually we are together as a family and go out for dinner, have cake & ice cream, and presents.  We usually do our best to celebrate each birthday and make it as special as possible.  This year, it’s a bit different.  We’re having a quiet day here at home.  David is just not up to the usual celebrations.

Since we got back from Basel, life has been pretty quiet.  He has spent his days sleeping, resting and recuperating from the treatment and going through what has been explained to us as “tumor kill”.  When the Y-90 treatment uptakes into the tumors, it then swells them and as the swelling subsides, it kills them.  We are hopeful that that is exactly what is happening.  We also hope that David will be getting a scan in the next few weeks so we can actually SEE that result.

So that’s about it.  Lots of rest.  Sleep. More rest.  Sitting around.  Lying around.  (Me pushing as much food into him as he will accept.)  More sleep and so on.  That’s all.

Thank you for your calls checking up on David!  He appreciates hearing from each of you….it brings the outside world in and your loving thoughts and prayers are so welcome!

Love, Connie

Hello everyone!

I am finally posting!  The fog is lifting from too little sleep and jet lag.  It has been a difficult week and I am thankful that it is Friday.

So, our trip to Basel.  We left on Thursday, and we found that traveling to Europe is exhausting!  Lots of changing of planes, and waiting in airports and not enough sleep.  We arrived in Basel Friday morning and headed right to our hostel.  Unfortunately, I gave the cab driver the incorrect address, so he dropped us off and left.  We went in to what we thought was the hostel, and realized that we were in the wrong place.  We weren’t too far from OUR hostel, but with David being overly exhausted and all our luggage, we called another taxi and waited to be picked up and dropped off at the correct place.  Wow, were we glad to just CRASH!

I will say up front, David was tired before we left and after all this, all he did was spend his time in the hostel, resting and sleeping.  John and I spent Friday hanging out with him and then Saturday morning headed out to explore Basel.  We found a flea market in the park nearest us and enjoyed ourselves wandering around and listening to all the German being spoken.  We did encounter one family speaking English, and of course, I had to speak up and say hello.  Her name was Robyn and she was so friendly and gave us a bunch of tips for getting around Basel.  Being newbies, we really appreciated her willingness to help us out.  We spent Sunday together and prepared for David to enter hospital on Monday.

Monday came and we called a cab to get us the few blocks to the hospital.  We went there, and I will say it is very different from what we are used to here in the United States.  We went up to the 4th floor and were buzzed into the radioactive area.  David’s nurse Martin met us, introduced himself, we introduced ourselves and he led us to David’s room.  That’s it.  No forms to fill out, no name band around the wrist, no gowns, no nothing.  He showed me where to stash David’s bag and led David to the hospital bed.  Following a bit of instruction, John and I left.

First, David was given something intravenously to protect his kidneys from the radioactive isotopes.  Then they gave him the shot of Y-90.  That was it.  He basically just had to be there because he was radioactive, and they of course wanted to see how he reacted to all of this.   There wasn’t much to do.  TV, but of course most of it was in German, or French, or other languages.  Not much in English.

John and I headed out to explore Basel.  It is a lovely city that is easy to get around in.  We walked all over and were a bit timid to try the public transportation.  We got a little lost, but with maps found our way back to the hostel.  One of the places we did find was the Co-op.  They are all over the city and are very nice grocery stores.  We spent a lot of time shopping there  because everything is so expensive, including eating out.  We ate sandwiches, and pizzas that we baked in the oven of the kitchen on the first floor in the hostel.  Our room had a nice little area where we could sit and eat.  Or we would take our sandwiches with us and eat picnics around Basel.

Tuesday morning, we headed up the the hospital to see David.  He had tolerated the treatment pretty well, although he did have some kidney pain that made him quite uncomfortable.  That is one of the side effects of the Y-90 treatment that many patients experience.  He also experienced extreme exhaustion which made him sleep a lot.  We spent some time there and then left again for a while, to return later in the day.  We didn’t want to spend too much time there as David WAS radioactive and, well, we just didn’t want to hang there too much.

Wednesday, we went back to the hospital to check David out.  He was still exhausted, and instead of calling a cab, we borrowed a wheelchair and wheeled him back to our room.  Fortunately, the hospital and hostel were very close so that wasn’t a problem.  I think it did him good to be out in the fresh air for a bit, anyway!

John and I spent the rest of our time in Basel wandering around, heading back to the hostel to hang with David, wandering around some more, spending more time with David.  Back and forth,  so we got our time to be tourists!  We went to the town square, the marketplace, the zoo, the Rhine River where John took his shoes off and played.  We walked and walked and walked.

On Friday, I had the good fortune to meet Karalyn who was there with her husband, Jim (he was in the hospital) so he could get a similar treatment for carcinoid.  Jim has had carcinoid for 5 years and they both were a wealth of information.  One thing she did for us was get us familiar with the public transportation.  She took us on our first ride on Bus #33 into the marketplace and from there on, John and I got a lot braver and started learning the system.  Both Karalyn and Jim gave us so much information regarding carcinoid, which we have implemented since we returned home.  We are so thankful we met them.  God puts people right where you need them, and I thank Him for that!

We did learn that David has another appointment in Basel September 23.  At that time, instead of the Y-90 treatment they will administer Lutetium 177.  It is another radioactive substance that is more gentle on the kidneys.  It also has had excellent results.  My job now is to get him stronger.  I will work as hard as I can to build him up in the next 2 months.

We headed home Monday morning.  We left our hostel around 10:30 a.m (4:30 a.m. Grand Rapids time) and arrived at the GR airport at approximately 10:30 pm Grand Rapids time.  That adds up to an 18-hour day and we all (David especially) were whipped and ready to be home and in our own beds!  My parents were there at the airport to greet us and Elisabeth and Angela showed up a couple of minutes later.  It was great to see them all and we grabbed our bags and headed home.

Since we’ve been home, David has been so tired.  As explained to me, along with the exhaustion from too little sleep and jet lag, he is experiencing “tumor kill” from the treatment.  That is a good thing, but not much fun to experience.  He’s been sleeping and resting and trying to get some food in him (well, that’s me trying to get him to eat more!)  In the last couple of days, I can tell he is beginning to come out of it.  He is more alert daily and sleeping less.

Thank you all so much for your kind wishes and prayers.  It’s what keeps us going!

Love, Connie

Hello again,

I will do a quick post today.  We are having a quiet day.  John seems to have come down with a bit of a cold, so today we have just lazed around the room with David.  We all had naps, and boy did that feel great!  It gets quite warm here in the afternoons, so we pull the shades down in the late morning, and the fly shields let in the breezes, but not the bugs (of which there are not too many.)   

David seems to have perked up a bit.  Yesterday he was experiencing pain in his left kidney.  They did a scan in the morning before he was discharged to make sure there were no obstructions and it all look pretty good.  The kidney looked somewhat inflamed, but the doctor said that was not abnormal.  Possibly it was enlarged a bit and pressing on some nerve endings.  Fortunately today that pain seems to have subsided and he is resting much more comfortably. Thank God for that! 

Basel is such a lovely, clean city.  The public transportation is wonderful and you can get anywhere you want using it.  Most people do not have automobiles, so they walk to the nearby shops or use their bicycles.  EVERYONE has bikes! There are shops and Co-ops nearby, wherever we happen to be.   Most people are friendly, and if we have had any questions, we just say “excuse me, do you speak English?”  Practically everyone we have asked DOES speak English and they are generally willing to help us decipher signs, or find our way around.  We have also met some very nice, English-speaking people who go out of their way to help us. 

I think John is a tad homesick … he misses playing with his friend Morgan …. but John and I have been playing a lot of Rummy, so that keeps him occupied when we have down time.

Thanks for all of your posts.  It is so helpful to know that everyone back home is thinking about David and praying for him! 

Love, Connie