Live from CTRC...

We are sitting in CTRC waiting for a chair to open up.  It has been very busy today here, so even though I don't have too much going on, everything is taking longer today.  The results of my blood work are back and everything looks fine; the only thing left is an EKG and then they give me another week's supply of LDE225.  It looks like we will have to wait some more, so I thought I would slip in a post.

As hot as it's been back home, it is even hotter here.  It's funny,  because I really used to love the hot weather when I was younger, but now it just seems so much hotter.  I know that's not really the case, but it sure seems like it.  I guess it one of those things that accompanies the aging process--we don't tolerate extremes as well.

We're hoping to see some rain when we get home today.  The forecast looks promising...

We are doing well.  It seems that so many trips is kind of taking a toll on us.  It's so hard to get into a rhythm.  Please understand that I'm not complaining...we are so blessed to be able to do it and feel well at the same time.  I have not had nausea with this medicine.  I am still able to work.  I am feeling well.  I have a good appetite.  I have even gained a few pounds, in spite of losing my hair!  We are truly blessed and thankful for what God is doing.

I knew if I started posting, I would be interrupted.  I have just finished the EKG and we are waiting for the pills.  We're getting out of here after that.  I will close for now...

God Bless all of you!

Kenny and Helen 

News from the treatment trail...

We are back from another trip to the River City...today is my 16th day on LDE225, and still so far the worst side effect that I am aware of is headaches.  Their frequency has decreased, but a couple of them have been a little more harsh.  Nothing I can't live with, however.  I will have another PET scan sometime in the next couple of weeks, either on the 29th or July 6; my next CT scan (with which they can measure tumor sizes) is set for sometime around the last of July.  Between now and Aug 3, we are scheduled to be there every week.  All this, of course, the Lord willing.

We were excited to have Shan and Stef with us on this trip.  One of the hard places of having treatment so far away is that it is more difficult for family (and friends) to feel as connected as they would like.  I know the girls would like to be able to physically be there more, so it was especially nice for them to go.  We were blessed to have a great time with them, and we enjoyed showing them off to everyone.

We spent some time away from the clinic on Monday with two of my fellow sarcoma patients and their spouses.  We enjoyed lunch and supper with them, and we guys got whipped by the ladies in Trivial Pursuit.  I thought I had a pretty good repository of useless knowledge and meaningless facts, but, boy, was I humbled.  We had a great time with them.  It was nice to be around them outside of a medical setting.

It was a real surprise to meet perhaps my most far-removed blog follower last Wednesday night at church, a fellow-believer from New Zealand.  I'm not kidding!!!  Yes, New Zealand, the country!  She has been praying for us for months now, and she came to Big Spring to visit a mutual acquaintance.  It was a real genuine uplifting blessing from God.  Hey, Jeanette!  How exciting to meet you!  God bless you!

We have missed quite a bit of church lately, so it was so good to see so many of you this past Sunday and Wednesday.  We are so fortunate to have so many who care so much about us.  We love all of you and so appreciate your love and prayers.

Happy 50th birthday, Debi!  Inconceivable!  You are such a blessing to us.  We love you!

Kenny and Helen

And now for the latest...

A lot has happened since my last post...I apologize for not updating sooner, but it has been crazy for the past week.  I know it has been a very busy time for many of you, especially with VBS and everything else going on.  I know several of you check this blog daily for updates, and we appreciate your interest.

  

We have been home and back to San Antonio and back home again since my last post.  I finished out the run-in week and then began taking LDE225 daily last Monday.  On Tuesday, Helen had an appointment with Dr. Beceiro in Lubbock for her thyroid.  On Wednesday, it was back to work (it's budget time!!), and then we left for SA on Saturday.  It seems all we have been doing is go, go, go, but it is truly a blessing that we are still able to do so.  We are so thankful that I still feel well and can go, go, go!

Yesterday was our 33rd anniversary (thank You, God), and we celebrated it by staying a couple of nights on the Paseo del Rio (the Riverwalk).  Even though SA is the place we go because of cancer, we enjoy the city and really try to make the most of being together.  The Riverwalk has recently been extended more than two miles, and we spent Sunday morning walking it and taking in the awesomeness of God's creative power.  It provided an inspiring setting for reading from God's Word and feeling close to and talking with God and each other.  We ended the day with a meal atop the Tower of the Americas, which offered a breath-taking view of the city.  All in all, we walked nine miles yesterday, on purpose!  And lived to tell about it!

Today began with breakfast before heading in to the clinic.  This time, I didn't have to be fasting, which makes thing a little easier.  After taking this new drug for one week, I have not experienced any debilitating side effects.  I have had a headache every day, a couple of days all day, but none were bad enough to keep me from doing what I needed to do.  I am so very thankful that it has not made me nauseous thus far.  I will continue to take this drug daily; only God knows for how long.  We will head back to SA again on Sunday, with appointments on Monday and Tuesday.  

We can't count all of the ways God continues to bless us.  His provision in our lives has exceeded our expectations.  He has protected and sustained us far beyond our abilities.  He has continued to flood us with peace way past our understanding.

We love you all,

Kenny and Helen

P.S. Today also marked a significant point in our journey...two years ago today we learned that cancer had returned.  We really didn't have any good options then; our only good one was to trust God with everything.  He has not disappointed!  He has continued to teach us that He can be trusted.  Romans 8:28!!! 

Grads and Bikes

The past few days were very easy medically, as we had to be at the clinic for less than an hour for blood work and vitals.  The timing couldn't have been much better to be here in this area for a couple of things.  We attended our great-nephew's graduation ceremony and party last night at Lackland Air Force Base. It was both sobering and exciting to witness.  Another thing to remind us that we aren't getting any younger; but it was a proud time for everyone.  Way to go, Jacob!

Today, the Texas 4000 for Cancer, the world's longest charity bicycle ride, from Austin to Anchorage kicked off in Cedar Park, just north of Austin.  Joel Farris, our niece's boyfriend, is one of the riders in the 4500-mile, two-month-plus long trek.  The first leg was a 70-mile route from Cedar Park to Lampasas.  We went to see them off this morning and meet them at a couple of resting points along the way.  While there will be around 50 riders (mostly students) with their sights set on Alaska, there were almost 400 bicycle riders who participated in the first day's trip. One of them was our niece, Jillian.  She completed the entire 70 miles riding a fixed-gear (single-speed) bike.  I am very proud of her.  Way to go, Jillian!  The web site for the event: www.texas4000.org.  This annual bike ride has raised over $1.4 million to fight cancer since 2004.

We plan to be back home on Monday.  Hope to see many of you soon.

God Bless,

Kenny and Helen

Another easy day...

Today was another easy day at the clinic.  We did get to talk to our research nurse and see some more friends that we had not seen for several months, Doug and Priscilla from Corsicana. Doug is a patient who has been on an experimental drug for two years.  He is the only remaining patient on this drug.  All other patients who had been on it have been taken off, as their disease had progressed.  He found out that the pharmaceutical company that makes his drug is not going to make it any more, so it will not be available to him any more after this month.  Doug and Priscilla are both strong believers, so they are resting in the fact that God is in control and He has a good plan for them.  He said that he was supposed to be dead four years ago, so God has blessed beyond their expectations.  Please pray for them as they look to God for direction.

We really do appreciate all of your encouragement.  You don't know how much it lifts us up. We love all of you.

Kenny and Helen

PS...I am thinking about writing a book about things I almost did.  I almost think it would be interesting. :)

Day 2 Run-In Week

Day 2 of the run-in week was super easy.  We only had to be at the clinic for less than an hour. I guess we were so tired from yesterday that we needed a nap when we got back to the house.  I had a headache this afternoon, but there's no way of knowing if it was related to the drug I took yesterday or not.  It is almost gone now, so I feel pretty good.  No nausea today, good appetite, no fever, not bad.

On the way in to the clinic this morning, we heard that the space shuttle had made a stop for refueling this morning in San Antonio at Lackland Air Force Base and that it could be seen from the highway.  It was on its way from California to Florida, and was "piggy-backed" on a very large airplane.  We drove down to the base after leaving the clinic, but just missed it by a few minutes.  Oh well, we can tell everyone that we almost saw the space shuttle. :)

Our time at the clinic will be about the same as today, so it should be a piece of cake.  I hope it's chocolate.

Love you all,

Kenny

LDE225 Day 1

We are back at the house after a long day at CTRC.  Although we were there for almost 12 hours, it wasn't really bad.  We were blessed by seeing several friends there that we hadn't seen in months.  It is always such a relief to see fellow patients who are still surviving and thriving despite the difficulties they have been through.

After beginning the morning with the typical vitals, blood sampling and other samples, I broke my fast with a meal of toast, jelly and juice -- a trio I am going to have to get used to if I stay on this drug.  The rest of the day was filled with periodic blood draws, EKGs and vitals.  We are encouraged that thus far I have not experienced any nausea, something that is a definite possibility with the drug.  I have to say it was a little weird taking a drug that only a handful of humans have ever taken.  But it didn't seem to make me feel any differently, so we feel good about that.  We'll see what happens with my blood work.  So far, so good.

Our time at the clinic the next four days should be much shorter.  I will not take the drug again this week.  However, we will go in every day through Friday for more blood work, EKGs and check-ups.  If all goes well, I should begin taking the drug daily on Monday.  We will stay here through then.

God has not only led us to where we have been and where we are, but He has carried us there.  We continue to rest on His promises and trust in His provision and His good purpose for our lives.

Blessings and love,

Kenny and Helen