Third PRRT treatment Basel, Switzerland

It took a while to get back to my blog so for anyone that may be following, sorry for the lag time. 

Connie and I went to Basel for the third treament in mid December and by the time we returned the holidays were upon us and we had also sold our farm and had to get moved into our new home in town so we were swamped through the month of January. 

The treatment went well and the uptake to the Tumors was very good according to the doctors.  I have been accumulating fluid in my mid section (abdomine) which has to be drained off frequently.  This was being done about every 3 weeks at the hospital in Jeffersn city so my doctor here suggested I have a perma cath installed and I would be able to drain it at home myself. This works very well and I can drain every other day or two so the volumn of fluid doesn't get so uncomfortabe.  So far I drain about two liters every other day and hopefully this amount will gradually decrease. 

At this point I feel about the same,. still lack energy and fight with some of the Carsinoid Syndrome.  Dr. O'Dorisio (University of Iowa Medical Center) said this is to be expected because the Radiation treatments continue to work on the Tumors for some time after the treatments.  Dr. O has added a Thyroid medication to my daily pill regement to help with my energy level and that seems to be working as well.  My next visit with him is in May for more CT scans.  

To sum things up I've stablelized to some extent no new Tumors at this time but no fewer either.  The Tumors that are there are under attack and should be dieing or at least not growing.

2nd PRRT in Switzerland

Connie and I are back from my 2nd treatment in Bazel, Switzerland.  Treatment was on October 3rd and was a little easier then the 1st one.  I think the anxiety was lessened as well because we knew what to expect and where to go and so on.  After the treatment and scans the Doctors said that the Tumors seemed to be stabilized to some degree, but my liver was still very large and burdened so for now I have blood work drawn every 2 weeks and the results sent to Basel.

 My third treatment is scheduled for 12/12/2012 and hopefully that will start to reduce the liver burden and lessen the Tumor growth so I will not need anymore treatments at least for some time.  The 2nd treatment cost breakdown:  Treatment:  $5200.cfs, Airline tickets $2200.cfs, Hotel:  $1100.cfs, Misc./food, etc.:  $500.cfs = Approx. $9000.cfs or $9,900US at this time. 

On a good note, the side effects of the 2nd treatment were less of a problem and I have been feeling a little better since we got back home. 

As far as the flight back and fourth goes I don't think anything can make that better unless Star Treks transporter is available. 

Once again Connie and I wish to thank everyone for their kindness and prayers, and support in anyway during this very difficult time in our lives. 

FYI:  Connie and I contacted Delta Airlines prior to our first overseas trip to look into the Delta Sky Miles program which would allow us to save $'s on the upcoming flights!  They advertise they are sky partners with KLM and Air France, not exactly correct.  After our first flights over and back we were scheduling for our second trip only to find the Sky Miles were only good on Delta flights and could not be used on the other transfers (Sky Partners)?  After a lenghtly discussion over the phone with Delta they agreed to discount our tickets for the 2nd trip by $550.US so be sure you ask as many questions upfront as possible!

One other thing to consider is to avoid the Paris airport for transfer flights if possible, RUDE & UNHELPFUL to the MAX.

Flushing Zebra Fund Raiser - Thank You

As you know by now the PRRT treatments are not covered by medical insurance even though I have Medicare and a good Supplemental Policy, so with that in mind our children have all pitched in to help us.

One of the greatest things was the Flushing Zebra Bash Fund Raiser. This turned out to be a fantastic event raising close to $40,000 with a turnout of over 400 people.  This group of  fantastic folks, friends, family, business peers, and friends of friends just show how great a place we live in.

Thanks to you all! 

Connie and I wish to say thank you from the bottom of our hearts to everyone that donated in any way to the fund raiser.  The money raised will go to pay the existing costs of the 1st treatment with enough left to cover most of the 2nd and 3rd treatments.

Without your sincere help we would not have been able to get into this treatment program.

To my family with love:

Connie
Sandy & Mike
Jeremy & Alana
Chris & Erin
Kari & Shawn
Shanon & Kelly
Kimberly

Always and Forever,

Dad 

Connie and I at the Flushing Zebra Bash ...

Back from first PRRT in Basel

The first treatment in Basel Switzerland went well, just as the doctors said it would.  I haven't blogged before now, because the side effects lasted longer than I thought they would. I have been weak and tired with a lot of enlargement to my liver. 

I spoke with Dr. O'Dorisio last week and he said the enlargement of the liver was to be expected because my liver was heavily burdened with tumors. He increased my Octritide injections to help control the Carcinoid Syndrome. 

The treatment itself was painless and only took about 15 minutes.  I  spent a total of 2.5 days in the hospital, rested at the hotel a couple of days and flew home.  (8 days total)  The cost of the first treatment with lodging, airfare, hospital, & misc.$14,400us. 

The worst part of the entire time was the flight over and back.  About 15 hours each way, 8 of it over the ocean with not much room to try to be comfortable. 

If you are planning this trip I suggest the following:

1. Pay for the upgraded seating on the long part of the flight (we went Delta)
2. If you are weak or short of breath ask for wheel chair assist all the way 
3. Try to plan enough time between plane changes as some of the air ports are large and getting from one flight to another can take longer than you think. 

Overall everything was good, the folks overseas were helpful when we needed it and most of the airport experience was good.  The University of Basel Hospital was excellent from beginning to end.

My next treatment is October 3rd so we'll be on our way again in a couple of weeks.

My grandson (Patrick Rath) and my son-in-law (Shawn Rath) seeing me off at the airport in Kansas City.

 

Pictures from Setup for "The Flushing Zebra Bash"

I'll be making a detailed post about the success of the "The Flushing Zebra Bash" in the next couple of days ... it was AMAZING! But wanted to share a few photos "pre-event" while were setting up the silent auction and decorating Bootleggers.  Photos and details from the event coming shortly.

Loading up the vehicles with "the goods".

Dad, Chris, and Brody

Silent Auction Tables Before the Event ... 100+ items!

Two Premium Liquor Baskets & Lottery Tree with 100 Lottery Tickets on It -- Raffle Drawing Prizes. PLUS setup for wine cork sale -- guests bought a wine cork and left with a bottle of wine -- we had 133 bottles of wine donated.

Decorations around Bottleggers

Quick lunch break -- Kim, Jeremy, Shawn, Alana, & Kari

The Flushing Zebra to greet everyone at the door.

Zebra balloons!

Good friends and neighbors, Cheryl & Troy

Sandy & Dad

Flushing Zebra Bash is Tomorrow!

We are frantically working to pull everything together for the Flushing Zebra Bash tomorrow -- it's going to be an incredible event! We'll have LOTS of activities going on throughout the evening, including:

50/50 Drawing
There's only ONE ticket left as of 8:30 AM today!  That means we are going to kick the event off by giving someone $5000!  Can't wait for that!!!

Wine Cork Sale
That's right, we're selling corks!  Buy a cork for $20 and you will leave with a bottle of wine.  We have over 120 bottles ... something for everyone's taste!

Raffle Drawing
Thursday is your lucky day! You can purchase one raffle ticket for $10 or three for $20.  This enters to win one of THREE prizes.  We have a lottery tree with 100 tickets attached to it and TWO huge liquor baskets!

SILENT & LIVE AUCTION
Over 100 incredible items ... everything from Spa Treatments, Rounds of Golf, Luxury Trips, and Sports Tickets.  You can view all the silent and live auction items in the EVENT PROGRAM.
You can also view them here:

Flushing Zebra Bash Silent Auction Items from MSW Interactive Designs LLC

See you at the Flushing Zebra Bash tomorrow!

(Just a few quick photos of the "Prep" for tomorrows event)

 

50/50 Drawing for the Larry Wardenburg Benefit

SOLD OUT!

The 50/50 drawing tickets are now available for anyone wanting to support the Larry Wardenburg Benefit (AKA "The Flushing Zebra Bash") on August 16th. 

Make a donation and you could win $5000!

Here's how it works:

1. Make a $100 donation to the benefit for the 50/50 drawing (you don't have to be local to Lake of the Ozarks ... you can be anywhere!)
2. You will receive a ticket entry into the drawing.  If you order online, we will mail you your ticket and also send you an email confirmation that we received the donation for the benefit.
3. Only 100 tickets will be available. If all 100 tickets are issued, the 50/50 pot will total $10,000.
4. The drawing will be held the night of the event, August 16th at Bootleggers.
5. You do not need to be present to win.
6. Winner will receive 50% of the total pot, and 50% will go to the benefit for Larry's Carcinoid treatment. Winner will receive up to $5000, assuming all tickets are issued. If all 100 tickets are not issued, the total pot will be split 50% to winner and 50% to benefit.