Christmas Tidings!

Christmas Eve!! Inconceivable!! Time flies when you're getting older!

Such a significant event! The humblest of beginnings, the Saviour came to earth as a helpless baby, leaving untold wealth and incomprehensible glory behind, to live and die among fallen mankind, to offer hope and an eternal future to all, including those who would not be satisfied until he was put to death. All He would go through was no surprise to Him; it was planned in eternity past by an inconceivably loving God. Yet Jesus still made the choice; He did it on purpose. All that we might have the gift of eternal life. How amazing! Joy to the world! The Lord is come!

Monday in San Antonio was relatively easy. My checkup went mostly good, although Dr. Mita pointed out that I had lost three pounds in the past two weeks and six pounds since October. It's likely that the weight loss is a result of my not eating as much as I used to, even though Helen is working hard at it to push the calories in. It is difficult to finish a meal when it doesn't taste good.

It wasn't until the ride home that I started feeling badly. By the time we made it, my throat was very sore and I could barely talk. It didn't take long to decide that going to work the next day was out. My research nurse was afraid that it might be the dreaded H1N1 flu. I was able to get in to see Dr. Long at home on Tuesday. He said that because the testing for H1N1 is so unreliable, he wanted to treat it as if it were H1N1. So I have been taking Tamiflu and staying either in bed or in the recliner. It's hard to feel sorry for myself when I know how much God has blessed me, allowing me to see another Christmas and be "healthy." I feel worse for Helen (and the girls), for everything they are going through because of me. Yet as we celebrate another Christmas, we recognize how blessed we are. All we have to do is open our eyes to see God's incredible mercy and care in our lives.

Helen and I want to wish each of you a wonderful Christmas. So many of you have blessed our lives in the past year in countless ways. Your support means so much to us.

Love and Merry Christmas,

Kenny and Helen

The latest ramblings...

About six and a half months ago, we were facing another major decision about whether to try a new treatment, having determined that the chemo I had taken was apparently not effective. There was a brand new experimental drug called LDE225 that was in Phase I clinical trial, with only a handful of patients who had taken it. Some of you may be interested to learn that this drug is supposed to interrupt the "hedgehog pathway" (a critical signaling pathway that plays a role in the development of some cancers) in an attempt to stop cancer from growing. I know... you thought "hedgehog" was either a furry, little critter or the product of a video game creator's imagination. Me, too! As I have researched this drug, I find that there are several types of microscopic hedgehog molecules in the human body, including Sonic Hedgehog, Desert Hedgehog, and Indian Hedgehog. For those of you unfamiliar with video games, "Sonic the Hedgehog" is perhaps one of the most famous and popular games of all time. What's the significance? Nothing! I just thought it was quite interesting and humorous. Anyway, I digress...

Getting back to the intended topic of this post...today marks six months that I have been on this drug, LDE225. Another day to celebrate! (cf. my previous post.) In spite of a few aggravating side effects, Dr. Mita does believe that it is helping, at least some. Most of the tumors do not seem to be growing at this point. Hopefully the others will follow suit as I continue to use it. We do know that ALL healing, whether using modern medicine or not, is the result of the hand of God. We continue to rest in Him and trust Him with our lives. We are blessed and thankful to enjoy each new day of life.

We did make another trip to San Antonio. I had a DEXA scan (bone scan) yesterday morning to see if there is any evidence of damage to the spine, hips, or forearms that might be attributed to the drug. We probably will not hear anything about this scan unless a problem is detected. The day was quite drawn out, as, for some reason, everything took much longer than usual. We didn't get back home until 8:30 last night. Helen had to slow way down for the last 30 miles of the drive because the highway had become largely iced over. We were very glad to make it home safely.

We are continually thankful for your love and support!

Kenny and Helen

Celebrate!!!!

As I take a few moments to contemplate the day...there are so many reasons for celebration. In June of 2007, we learned that my sarcoma had metastasized to my lungs. The medical prognosis was delivered -- "incurable." As many of you know, something happens to a person when they are told something like that. Actually, a number of things happen. One thing is that you begin to recognize milestones. In a sense, every single day is a milestone. Most especially, though, you look at certain dates and occasions from that perspective. Every holiday, every anniversary, every special day are all cause to celebrate, just knowing that you have made another one, that you have survived long enough to see it.

Today, we celebrated my third birthday since that day. I have seen three Thanksgiving holidays, two Christmases, two Easters, two wedding anniversaries, 2 1/2 years' worth of family and friends' birthdays. Two Super Bowls, three July 4ths, well over 100 Sundays. And every one of them came with the realization that it could be my last. I have been so blessed.

Whether we realize it or not, healthy or not, we are all in the same predicament -- each day we live could be our last. Every day of life is precious. We need to recognize each new day as a gift from God and a new reason to celebrate. "O give thanks unto the Lord for He is good, for His mercy endures forever!"

Thanks to everyone for your calls, texts, visits, and wishes today. They were so uplifting! Thank you, Helen, Shan, and Stef for a great birthday! I love you so much!

We love you all!

It was a pretty long day...

at the clinic Monday, though not too hard. Helen's sister Mollie from Austin came with her daughter Jaclyn to give us some company, which we really enjoyed. My CT scan report was somewhat mixed--the largest tumor has grown since my last scan eight weeks ago. However, there appeared to be no growth in any of the other ones. We will continue on the same schedule at least for the next eight weeks, barring any unforeseen problems. We have begun Cycle 7 and will celebrate half a year on this drug in a few days.

We are very tired and looking forward to a few days off from work. We are so thankful that we have another time of Thanksgiving together. Our blessings are countless. Our God is limitless. His grace is boundless. His plan for us is flawless. His love for us is endless.

"Those who know Your name will trust in You, for You, Lord, have never forsaken those who seek You." Psalm 9:10

Brief update...

Just a brief update...We will be heading south again for another appointment on Monday. First thing will be CT scans, which will reveal whether the tumors have changed any (or perhaps disappeared). If scan results are good enough, we will continue the current schedule, beginning cycle 7 on Monday, Lord willing. We appreciate all of your prayers and support...

Kenny and Helen

Food for thought...

Things went good at CTRC today, day 15 of cycle 6 on this experimental drug. As expected, the load today was pretty easy. We were blessed to have Shan with us on this trip. Our girls have not been able to go with us very often, so it means a lot to us whenever they can.

The main topic of our appointment was my loss of the sense of taste. For the past week, I have been unable to taste almost anything I have eaten. I would say that my ability to taste food is about 90% gone. It has most likely been caused by the drug I am taking, and so whether or not the effects are temporary or permanent are not known at this point. They do believe as long as I remain on this drug at this dose, it probably won't get better. Medically speaking, of course. We know that this did not happen without God's permission, and He can do whatever He wants for His own glory and for our good.

I never really realized how much food meant to me until now. It's kind of sad, but we do look forward to our next meal much more than we might admit. God did bless us in His infinite creative wisdom with a keen sense of taste so that we might actually derive pleasure from eating. His plan included wonderfully designed flavors contained in the various edible things He created for that purpose. So it's not wrong for us to enjoy the process by which we are provided with the nutrients our bodies need. But, boy, do we carry it way too far sometimes. I am sure I have been guilty of that way too often.

One thing I still know -- God is infinitely good. His blessings and grace in our lives are evident and tangible. I can still taste that! "Oh taste and see that the Lord is good; blessed is the man who trusts in Him!" Psalm 34:8!

Love you all,

Kenny and Helen

We're Back...

We are back home again...everything is OK, but I have not felt well since the surgery yesterday. The operation to remove my port and place a new one on the opposite side went well with no problems. However, it has left me feeling pretty badly. The worst pain hit me late yesterday evening, probably because the anesthesia had mostly worked its way out of my system. I had a rough night, but it would have been worse without the recliner. We both really wanted to get home today, so we decided to go ahead and get back. I felt sick for half of the trip, but started feeling a little better as we got closer to home. I sure was thankful for Helen doing so much more than her share of the driving. We were just happy to be back. I am looking forward to feeling better in the next couple of days.

We appreciate your prayers and love you all,

Kenny and Helen

Short but brief update

I had a few minutes, and I have a little news, so I thought I would post a quick update. We finally got word yesterday about our schedule next week. We will have our regular "Day 1" appointment for a new cycle (#6, PTL) at 8:30 Monday morning, when we will do the regular stuff (no scans planned) and meet with Dr. Mita. If my blood work is OK, I will get a new supply of LDE225. I am scheduled for the surgery to remove my port and install a new one at 11:30. We are happy that they were able to get it scheduled for the same day. We do not plan on traveling home until Tuesday, or Wednesday if I'm am not up to it on Tuesday. We are looking forward to getting it done and over with.

I have been feeling mostly good. The rib has caused me virtually no problems, except keeping me from doing a few things. I am still having muscle cramps several times a day in various parts of my body...not a big problem, but weird. Headaches are still fairly often. Not too bad considering. Honestly, I am very blessed to feel so well and to still be able to do almost anything I want to do, with the exception of boxing, tackle football, world-class running and beauty contests. (Those are the things my doctors have specifically said I could no longer do.) They didn't say anything about hockey or bungee jumping, so maybe...

God Bless....

I HAVE A WHAT?!...

There is a lot to catch you all up on for the last two weeks. We have made another trip to SA, and are now back at home. Today was a most unusual day for us, particularly in light of the fact that it is day 15 of a treatment cycle, which normally is an easy and uneventful day for us at CTRC. But today's visit was far from that.

A "series of unfortunate events" occurred in the past few days that made today's visit more interesting. As I wrote about earlier, we found during our last visit that there was some kind of problem with my port, which would have to be looked into today. We were scheduled for an x-ray dye test first thing this morning to get a good look at the port and catheter in an attempt to assess the cause of the failure.

This past Wednesday while at work, I had an awkward fall while walking along a creek bed, twisting my body, but in particular my knees. My right arm and side hit a small dirt ledge along the side of the creek. I was afraid that I might have sustained a pretty good injury to my knees, but decided to give it a day or two to see how it went before seeing a doctor about it. My right knee was swollen by Wednesday night, and for the next two days I had a tough time walking. But by today, they were both much better.

On Sunday morning at 4:00, I was awakened by severe pain in my side. For at least 30 minutes, I didn't know if it was going to get better or not. The pain was unrelenting, spreading throughout my torso, but centered in the middle of my right side. As I read from the Psalms and prayed, the pain began to slowly subside, and by 6:15 I thought I would try to sleep a little in the recliner before trying to get up to go to church. During the most intense part of the pain, I wondered if it were possible that the cancer in my right lung might have turned aggressive, or if I may have had a collapsed lung. However, when I awakened at about 7:30, it felt much better, so I decided that I would not need to go to the emergency room.

Fast-forward to today: the dye test revealed a slight leak somewhere in the catheter line of the port, meaning that the port cannot be used any more for anything and should be removed. The question was whether or not to put another one in. Dr. Mita's recommendation was to have a new one placed after taking out the deficient one. We plan on having all that done during our next visit in two weeks. It is a minor surgical out-patient procedure.

When I told the PA about the pains I had Sunday morning, after checking me over, she conferred with Dr. Mita. They gave orders for CT scans, which we all hoped would rule out two scary possibilities: cancer in the liver and pulmonary embolism (blood clot in the lung). Neither would be very good news. Within the hour, the CT scans were done, and we were awaiting the results. After a surprisingly brief wait, the PA returned, and we went back to a room to discuss the results. On the way back, she told Helen, "You won't believe what it is." She began by asking me what I thought it was. After I said that I didn't have a clue, she said that I had a BROKEN RIB!!!!!!!! After picking my jaw up off the floor, I asked her repeatedly if she was kidding. Rib #6 on the right side was broken, and there was nothing that needed to be done about it but to let it heal. There were no signs of cancers in the liver nor around the rib area, and no sign of embolism. I just said, "Praise the Lord!" My whole body has been hurting since my fall, but I have been focused on my knees, and did not even consider the possibility of injury to my ribs. The PA said that she just had to laugh because they never diagnose broken bones...this is a cancer treatment center. As you can imagine, we were very excited about the broken rib! Is that not CRAZY?!

We are just so thankful to be home again and so grateful for God's grace in our situation. We are reminded how quickly things can change in life and we need to be ready for whatever might lie ahead. God's grace is sufficient and His love endures forever!

News from the port...

They worked on my port until around 3:00, but were still unsuccessful at getting it flowing. Dr. Mita said that next time we come down (in two weeks), we will probably need to have x-rays with dye to try to determine what is causing the problem. It is not anything major, but it is important to keep it free-flowing and unrestricted to avoid infection and also to be able to use it if needed.

The type of port I have is pretty amazing. Called a "Port-a-Cath," it is entirely under the skin with nothing outside the body. It is in place just below my left collar bone and provides a way to infuse medications without having to have an IV. "Accessing" it is simply done by inserting a special needle through the skin and into the body of the port. It is not much more than a needle prick and is much better, in my opinion, than an IV. The older type of ports had very small access tubing actually protruding outside the body that could not be submerged and had to be kept clean and dry. With this one, I am restricted from only a few activities, like boxing and tackle football. How disappointing!

Anyway, we are home safely and beginning Cycle 5 with this new drug. We are very blessed and grateful for God's grace in our lives. We continue to trust Him with our lives and He is faithful in spite of our failures. Thanks to each of you for your continued support. We are blessed!

Kenny and Helen

We'll see what happens...

We are in the treatment room at CTRC as I write. I have completed four 28-day cycles of LDE225. My CT scans showed only very slight growth today, so we are clear to continue on this drug. We are thankful. Praise the Lord! In a Phase I clinical trial like this, the main objective is to determine maximum tolerable dosages for the drug. Dr. Mita consulted with the drug company, and they want to double the dose beginning with this cycle, so I started that today. We'll see what happens...

I have been feeling pretty well for the most part. I am still having headaches fairly often. A new development has been frequent muscle cramping in various parts of my body. Dr. Mita is not sure whether this is a side-effect of the drug or not. No other patients to her knowledge have had that happen. My blood work was a little off in certain areas, but she is not sure if that is related or not. I guess we will see what happens...

They had trouble flushing my port today, so we are still here because of that. If they don't get blood return when flushing, it could be an indication of a stoppage or clot. For some reason, they have not been able to get blood back. They have injected a drug called TPA into my port, which will normally thin out the blood and break up small amounts of buildup. It didn't work, so they tried reaccessing my port. That didn't work, either. We are still waiting to see what happens...

I was picked up by a UFO...

Thought I needed to check in at least...there is really no new news, and things have been very busy, so I have been letting the blog slide a bit. To both of my readers who check here often: I will try to do better.

Another quick trip to SA...mid-cycle visits on LDE225 are usually pretty uneventful. We had an easy day at the clinic. Tuesday marked my 100th day on this drug. Tempus fugit, huh? Side effects thus far? Headaches (although not as frequent as earlier), increased acid reflux, sore joints, possible slight changes in vision. Nothing I can't live with. Overall, I am still feeling quite well. PTL!!

Our next visit could be a pivotal one. The results of my CT scans will determine whether or not we continue with treatments with this drug. We are thankful for what God has done, is doing, and is gonna do. Our God reigns!

Kenny

Cycle 4 Begins

Yesterday was one of the more "efficient" days lately for us at CTRC. We arrived at 9:00 and I was called back into triage for one of my blood draws before we even had a chance to sit down in the waiting area. My EKGs were done next, and by 10:00 I had eaten my ritual breakfast. We saw Dr. Mita at 11:00, went back to the treatment room for another blood draw and waited for my drug. By 12:15, we were done. There seemed to be fewer patients there, for whatever reason, which we were glad to see. Typical Mondays are very busy.

I am now in Cycle 4 of this clinical trial. We should get an idea of the efficacy of this drug when I have my next scans on September 28. I am still feeling well.

We went down early this time so we could have a little time to play. We went to a couple of high school football games at the Alamodome on Saturday. We thoroughly enjoyed that. It was kind of nice spending some time there not doing the medical thing.

God continues to bless us in so many ways. He has used many of you in doing so. We are thankful for each of you.

Love,

Kenny and Helen

LDE225 C3D15

We are home again following an easy day at CTRC. Today was Day 15 of Cycle 3, which means I have been taking LDE225 for 71 days now. I woke up not feeling very well. I have been having acid reflux more often, possibly a side-effect of the medication I am on. But each new day is a blessing from the LORD. It was a good day at the clinic. We met some new patients and saw some old friends as well. We return from every trip with more people to pray for.

Our hearts were uplifted by the testimonies during the worship service yesterday morning. And the burning of the "burdens" written on note cards reminded us that we can lay our inadequacies at the foot of the cross and leave them there. We left for the big city feeling more refreshed and renewed.

Tomorrow is a work day for both of us, so I will close...

We are blessed...

The latest...

It has been quite a busy week...I have worked five days this week, which I haven't done in ten weeks, and every day has brought new challenges there. We have been so busy that the days have flown by. Helen has started back to work...summer is just about over...inconceivable!

My mother had gall bladder surgery this week as well, and the Lord blessed in that. Everything went very well, and she is recovering nicely. We are thankful for that.

The "Texas 4000 for Cancer" bicycle riders arrived in Anchorage, Alaska a few hours ago! You may recall that they left Austin on June 6th. I received a phone call a few minutes ago from Joel to let me know they had crossed the finish line after 70 days and 4500 miles! Incredible! I am so amazed and so inspired! Thank you to Joel and all of the riders for their efforts in the fight against cancer. If you want to see some great photos and read blogs from the riders, you can still do so at their website at http://www.texas4000.org

We will be packing tomorrow for another quick trip to San Antonio. We really enjoyed getting to be home last Sunday all day. It has been a great blessing to be home for almost two weeks. We are grateful for all God has done as well as for what He is going to do.

God Bless...

Good News Today!

It was a long day at the clinic today, but we did get good news. Dr. Mita said the scans showed no new masses and also no substantial change in the existing "nodules." This means we will continue on the same course for at least the next eight weeks. However, we'll only have to come back every other week. YAY! PRAISE THE LORD!

Even though we don't have any appointments here tomorrow, we are staying overnight. We are both too tired to make the trip back home, so we'll wait until tomorrow to get back on the road. We are so excited that we get to spend (Lord willing) all day next Sunday at home!

We are thankful...

A berry hot day...

As I write this post, I am enjoying my favorite drink, a berry smoothie, also known as barium sulfate suspension. I know there are worse forms of torture, but this is even worse than having to eat my vegetables when I was a kid. You would think with all of the technological and scientific advances, someone would come up with something that doesn't gag you. It's actually the worse part of the CT scan for me. Anyway, we came in at 7:30 this morning for my labs. I have already had the PET scan done, and in about 20 minutes will go in for the CT.

San Antonio has been record-breakingly hot this summer. Yesterday's high marked the most days of 100 or higher temps in one year on record, with most of August still to go. Forecast is 100+ for the rest of the week at least. Coupled with the lack of rainfall, much less than we have had at home, we have never seen it so brown and dry around here. Everywhere you look, once-immaculate yards are dying. I am thankful for a wetter than normal July at home.

We appreciate your prayers for Helen's family. Her mom's surgery went well. Diane's surgery went as well as we could have hoped for, with no trace of malignancy. There was a fist-sized mass removed from Angela's thyroid. The doctor's were afraid that it was cancerous, but it was not. PRAISE THE LORD!!

We should be seeing Dr. Mita this afternoon sometime to discuss scan results and the game plan. We will try to post again later today if we are able to so we can let you all know how it went.

Love you all....

Untitled

We are back home again after one of our quickest trips. We left later than usual yesterday because I had to put a new battery in the car. We're just thankful it didn't happen after we had already left. We just passed 140,000 miles last month, so we had it in the shop a couple of weeks ago for a check-up. It got a clean bill of health. Has this not happened to all of you?: the battery had a free-three-year-replacement warranty, and we had bought it three years and one month ago. It's a conspiracy! They did give us a huge discount, as it was an eight-year battery. Anyway, we made it to SA and back with no problems.

Today was an easy day at the clinic. In at 9:00 and out at 11:30. Relatively routine. Short visit with the PA. Blood work good. Another week's supply of LDE225. Next week's appointment on Monday will include blood work, a PET scan, followed by a CT scan, my strange breakfast, an appointment with Dr. Mita, then back to the treatment room to wait for two week's supply of pills. It will be a rather long day...

We did discuss the protocol today and found out that the 20% growth standard applies to this experimental drug as well. If measurements from new CT scans show more than 20% growth from the baseline scans (from May), or if any new tumors appear, I will not be able to continue on this trial. This is basically the same for just about all clinical trial drugs. We continue to trust God and His good plan for our lives.

Please pray for Helen's niece, Angela. She is having at least part of her thyroid removed tomorrow. There is a possibility that it could be malignant; God knows and He has a good plan for her. Also, Helen's sister, Diane, is having surgery to try to correct complications from diverticulitis on Wednesday. It is quite a difficult surgery. Pray that God will enable the doctors to accomplish what needs to be done.

We are thankful for all of your prayers and concern.

Kenny and Helen

A lot of writing...not much news. Hey, I ought to start a newspaper!

Well, it's Monday, and you wouldn't believe where we are...yeah, you guessed it--San Antonio.  This is day 15 of my second cycle on LDE225.  I have taken the drug for 43 days, and so far I have tolerated it well.  Thus far everyone who has taken it seems to be handling it OK (it is still very early), so they are getting ready to double the dosage to the next several patients.  The verdict is still out as to how effectively it is dealing with cancer.

There is not much news to pass on, which is, in and of itself, good news.  Although "status quo" takes a hit most of the time, in this case, it's good.  We'll take it.  We are looking forward to slowing down just a bit, Lord willing, in a few weeks.  God's timing in the past seven weeks could not have been better for this part of the journey, as our weekly trips hit just as Helen's summer break arrived.  We continue to trust Him with the details of our lives.  He really knows what He's doing.

We went to our nephew's wedding in Comanche Saturday before visiting Tom and Mollie in Austin and then heading here.  Weddings are so much fun!  Almost everyone from Helen's side of the family was there.  We all get along so well, so we had a nice time.  Stefani caught the bridal bouquet, so we will get announcements out to you all soon.   :)

Helen's family will be busy in the next couple of weeks.  Her mother is having surgery this week, and her sister Diane and her niece Angela both have operations scheduled for next week.  Please pray for them.

We missed being at church yesterday.  It just ain't right when we ain't able to go.  We appreciate so much everyone who has filled in for us when we have missed.

Tomorrow should be quick and painless at the clinic.  Well, at least painless.  They are so busy, especially on Mondays and Tuesdays.  If you think about it, it's sad when you see so many who are suffering from cancer.  But it is also good that there is a wonderful place for them to go for help like CTRC.  

As I finish this post, it is beginning to look like it might rain.  I think I'll go outside and watch it. 

Thanks for checking in.  We love you all.

Kenny and Helen

Scans and Schedules

We are sitting in the treatment room at CTRC awaiting my medicine for this week.  We have had the blood work and have seen the PA.  During the first month of this treatment, I have had a headache almost every day.  However, the past week I did not have a headache all week!  Thank You, God!  We did get the report about the PET scan from last week.  While there are no new areas for concern found, the larger "nodules" appear to have grown slightly.  Only slightly, with not much change.  We are encouraged that there seems to be no signs of aggressiveness at this point. 

We will head back home this afternoon.  We are scheduled to be back the next three Mondays.  Following that, it should slow to every other week.  All of that is contingent on our staying on this clinical trial.  The next CT scan is sometime around August 3rd.

Thanks for your love and support.

Quick update...

A quick update about the PET scan...there is no update about the PET scan.

The clinical trial I am in uses PET scans, but not for "re-staging", so there was no rush for the results.  We are spoiled in that just about every scan we have had, we have gotten results within hours on the same day.  Because that was not necessary on this study, it will take the normal length of time to get a report.  If I understand things right, the CT scans that I will have every other cycle (every eight weeks) will be handled more quickly.  We may not hear anything until we return on Monday.  Whenever we do hear, we will let you know in this blog.

This blog is not intended to keep you from calling us.  We appreciate phone calls, as well as your comments here.  If you feel impressed to call, or if you are just curious about something we are doing or going through, please do so.  We are grateful for all of you.

Our next visit will be just for Monday, Lord willing, and should be relatively easy.  

Well, lunch is just about over, and I must be getting back to work.

TTFN

Kenny

Misuse and Abuse (I Have to Pay for This!?)

Today was another long Monday at CTRC.  Cycle 2 of treatment with LDE225 began today.  We had blood draws scheduled for 8:00, so we left the house at 7:15.  On good days when traffic is perfect, it is a 25-minute drive.  During busier mornings or afternoon hours, it can take as long as an hour.  Life in the big city...

My PET scan was scheduled for 8:30.  To begin, the "scannee" (a word I just made up) is injected with a radioactive isotope and secluded in a small room with a lead door and lead walls for an hour to allow the material to work its way sufficiently through the body.  Then the scans begin, which take about 40 minutes to complete while the patient remains motionless.  Why do you always feel like there is a fly on your nose at times like these?

This was followed by my ritualistic breakfast, with which I literally broke my fast--three pieces of toast and jelly washed down with OJ.  Yummy, yummy!  I have actually gained four or five pounds in the last month.  Helen says it is because of this breakfast regimen.

We were happy to see Dr. Mita next.  She always brings a relaxed calmness into the examination room.  While she doesn't always have a good report to discuss, she provides positive support and insight.  My blood work looked OK, with nothing unusual.  She had not seen the scans yet, so we didn't get any results today.  We will see those tomorrow.

A skin biopsy was next, a 4-mm skin sample taken from my shoulder blade.  I begged them to put me to sleep for this, but torture seemed to be the order of the day.  Actually, the only thing I felt was the needle prick when they shot lidocaine in my back to deaden it.  The rest was pretty much painless.

Then came the main event--the hair follicle samples, otherwise known as CTRC waterboarding. It took probably 25 tries to find 5 hair samples with suitable follicle bulbs attached.  Each pluck is painstakingly performed to avoid breaking the hair off.  Apparently, my hair has not quite recovered from the damage caused by chemotherapy in March.

My port had not been accessed for five weeks, so the next blood samples were taken from it.  It has to be "flushed" at least every six weeks.  LDE225 is in capsule form, so my port does not have to be used for treatment.  After receiving another week's supply of the drug, we were finally free to make our escape.  

We were blessed to see more rain at our place in Universal City.  The San Antonio area has been hotter and drier than Big Spring this year.  We really, really enjoyed the rain at home the past couple of days.  I am still feeling well, with the exception of minor headaches almost every day.  We are thankful for God's sustaining power in our daily lives. 

Later,

Kenny and Helen

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

Results and reports...

Today our research nurse, Pat, called to discuss the results from the previous days' tests.  The MUGA (heart) scan showed little change from the one I had two months ago.  My blood work was acceptable for the trial.  The PET CT scan was stable in comparison to the previous one from January.  My bone density is overall normal.  The regular CT scans showed "slight increase in size of multiple nodules" in my lungs, but no new tumors anywhere.   We feel good about these and are excited that there is nothing new that has turned up.

God willing, we will head to San Antonio on Sunday and I'll receive my first dose of LDE225 on Monday morning.  That day will be an eleven hour stay at the clinic, as blood work and EKGs will be done all day.  We will have to return to the clinic the next four days for more blood work and EKGs.  If everything is OK, I will begin taking the drug every day the following Monday.

LDE225 has been given to five patients thus far, four in the US and one in Spain.  They were the first ever humans, receiving the minimum dose, and so far they have tolerated it well.  In a Phase I trial like this, the primary goal is to determine if the drug can be taken safely by humans and, if so, how much can be tolerated.  Because I'm in the second tier, or group, of patients, I'll receive twice the dose that the first group did.  As far as we know, I will be able to continue taking the drug for as long as I tolerate it, for as long as I am receiving a benefit from it, and as long as I want to.  This drug is not a "chemo" drug, and they do not believe there will be very many detrimental effects from it.  I guess we'll soon know.

The next several weeks will be filled with lots of trips and lots of time spent in San Antonio.  The timing of it will really be in Helen's favor, as school is over tomorrow for the summer.  We enjoy being together and are incredibly blessed to have such a great home away from home with her sister and brother-in-law.  We are thankful for God's sustaining power and never-failing provision in our lives.

We love all of you,

Kenny and Helen

Back home again!

Well, it's been a couple of pretty long days...I feel scanned out.  I've had almost every scan known to man in the past two days (not really--it just seems that way).  God has blessed in so many ways.  Somehow, my last scan today was moved up almost an hour, and we were able to leave and head back for home about an hour earlier than we anticipated.  We talked to Janis a couple of hours out of town, and she told us that a pretty severe storm with large hail hit Boerne probably less than an hour after we left there.  If we had been there when we thought we were going to be there, we may have sustained damage.  Thank you, Lord!

I was joking about being worried about the hair follicle samples that had to be taken, taking into account my hairless dome.  On Tuesday when it was time, I thought I was being tortured by Jack Bauer (of "24" fame).  They needed five samples with good follicles intact.  They started with my eyebrows, but the follicle was not acceptable, so they went next to my mustache.  Although the sample was a good one, they decided to try elsewhere when they saw the tears in my eyes.  They were able to find enough chest hairs (yes, I used to have some before this).  I told Helen I would have thought the chest hair removal hurt bad if they hadn't already plucked a mustache hair.

I'm on the schedule for taking the drug for the first time on Monday, barring something turning up on the MUGA (heart) scan or my blood work that would exclude me from being accepted in the trial.  We have not gotten any results from any of the scans yet.  We expect to hear from our research nurse tomorrow.  

It's nice to be home again.  We are very tired but glad we came home today.  We will be heading back Sunday, and this time will have to stay for eight or nine days.  We're both going to work in the morning, so I will wrap this up.  I'll have more info about the drug and our schedule in the next few days, Lord willing.

Tfyewap! (thanks for your encouraging words and prayers!)

Love you all,

Kenny

Schedule Confirmed...

Well, we finally have a schedule for next week.  We will have a busy two days at CTRC doing eligibility screening for the new trial.  On Tuesday, we'll begin with a meeting with the research nurse for a couple of hours.  Following that, I will have to have a skin biopsy taken.  Then at 4:00, I will have a DEXA scan, which assesses bone densities.  I have never had one of these, so I'm not sure what to expect.  On Wednesday, at 10:40 I'll have a MUGA scan, which assesses heart function, a PET scan at 12:00, and a CT scan at 4:00.  All of this, plus the usual blood and urine tests.  I asked the scheduler if there was anything else she could schedule me for, like maybe a surgery or something, since I had an hour or two open on Wednesday morning.  :)  Anyway, it's good to finally know when we are going to do what next week.  It will be nice to not have to leave on Sunday this time.  Because of the holiday, everything is shifted a day.

We continue to trust God and His plan for us.  Please continue to lift us up in your prayers as we approach all of this testing.  

God Bless,

Kenny and Helen

Rainy Relay...New Treatment Info

IT'S RELAY TIME!!  We are at home watching the remnants of quite a storm that passed over.   We wimped out after the Survivors' Walk and left before the rain and lightning came.  We just drove back by the stadium, and it looked like many had moved into the ATC building.  The field lights were off, but there were still quite a number of cars in the parking areas.  Although we severely need the rain, I was looking forward to the Luminaria.  I'm assuming that most or all of the sacks were wiped out by the rain.  The Luminaria is always a great time to reflect and remember those who have gone before us as well as those who continue to fight with us in this battle.  I thought a lot about Danny Weir today.  He showed all of us how to fight with dignity and honor.

I know some of you made a donation for luminaria in my name.  I don't know who you all are, but I appreciate your love and support.  It means a lot to me.

I finally talked to my study nurse in San Antonio today.  We have a tentative schedule for now. I will be doing eligibility screening (scans, blood work, etc.) during the week of the 26th for a couple of days.  If everything is acceptable,  I should receive the drug, a pill, for the first time around the first of June, followed by extensive blood work for five days.  The following week I would begin taking the drug once daily.  We will share more details as we learn more.

Once again, thank you all for your comments, prayer support, and everything!

God is Good....

Kenny

Change of Plans

Our plans have changed for the next few days...after much prayer and seeking, we have told Dr. Mita that we have decided to try one of the clinical trials she had discussed with us.  We feel a peace that this is the next step we should take.  Our Monday appointment with her has been cancelled, as it is no longer necessary.  We don't know when the next appointment will be.  We should find out more next week, as well as find out more details about a possible schedule.  As with all clinical trials, there will be required eligibility testing that will need to be done prior to beginning treatments.

This is a Phase I trial, meaning that participants in this trial will be the first humans to ever receive this experimental drug, called LDE225.  It is a pill that is taken once daily.  In the first month of treatment, we would have to spend a lot of time at CTRC.  The months following would require fewer visits.  While it is not certain what all of the side effects would be likely, they do have a fairly good idea based on laboratory experiments with animals.   

We are planning to see Helen's sister, Diane, in the next few days.  She is at Scott & White in Temple with a perforated colon.  Please remember her in your prayers.

Thanks to everyone for just being there.  God is Good!

Love, 

Kenny and Helen

Busy is Good...

Well, it's been a week since we posted here.   Our lives have been so busy with so many trips and work and everything...it has been a real challenge to keep up with everything.  Actually, we're not really keeping up with everything, but we're doing our best.  It's great to be alive and have things to keep up with.  I am feeling well.  We are grateful for every day God blesses us with.

Not much has changed since our last post.  We have emailed our doctor some questions we have about treatment options.  At this time, we still don't know which direction we will go.  We continue to trust that God will reveal whatever He knows we need to know whenever His time is right, however He decides to do so. He is the One in control.  We are glad of that fact!  Pray that our eyes and hearts will be sensitive to His guidance.  

I would love to be able to respond to all of your comments on this blog.  They have continually been such a blessing to us!  All of them are special to us.  You don't know how much every one of them have meant to us!

We are blessed!

Kenny and Helen

Update on today's appointment

We are just about to leave the clinic and head home. Dr. Mita said that the scans showed no new tumors anywhere, but one of them, the largest one, shows a little bit of growth. The others appear to be the same. We are definitely not going to continue the Doxorubicin treatment. We discussed three treatment options, one which would involve treatment with two conventional chemos that are generally tolerated better than the one I had. The other two options involve experimental drugs in very early stage. We did not decide on anything today. We have paperwork for the options to review and pray over, and we will see Dr. Mita again in two weeks. She was not willing to give us longer than that.

We are watching it rain hard here. I am going to go out and stand in it, I think. We are going to find a place to eat and then get on the road home. We appreciate all of you and continue to ask you to pray as we continue to face these decisions.

Love you all,

Kenny and Helen

Tomorrow's schedule

We made it to San Antonio safely.  Our plans for tomorrow:  my CT scan is scheduled for 10:50 in the morning.  I'm not sure if I will have blood work done or not.  We will meet with Dr. Mita after she has viewed the scans.  We really don't know when, but we expect it might be sometime around 1:00 or so.  We will be discussing the scans and also any options we might have.  Right now, we don't have a clue what we will be doing after that.  But God does!  We are just trusting Him to continue to guide us, even one step at a time.

We are so thankful for everyone who is praying for us.  We will try to post an update on this blog as soon as we have time tomorrow to let you all know how things are going.  

We love you all!

Kenny and Helen

I'm tired just thinking about it...

Hey everyone!  I am finally feeling pretty close to normal...I don't know if I've really ever been normal, so I'm not sure what that's supposed to feel like.  Anyway...

I wanted to tell you all about my niece Jillian's good friend, who is also a friend of mine.  Joel Farris is a student at UT Austin. He is preparing for an amazing feat--he and a group of about 50 riders will be RIDING A BICYCLE FROM AUSTIN TEXAS TO ANCHORAGE ALASKA for cancer this summer.  Actually, they will ride more than one bicycle; each one of them will have their own.  You know what I mean. :)  The annual event is called Texas 4000 For Cancer.  They will cover anywhere from 60 to 120 miles a day for about ten weeks.  Incredible!  He has dedicated his ride in part to me and has named his bicycle "Kenny."  I am humbled.  If you would like to learn more about this event, you will find his web page at http://www.texas4000.org/user/profile/10223

Your comments on this blog as well as all of your support and concern expressed to us personally have really touched us.   We are in awe of all God has done for us.

Debi, I really did get my head shaved!  I wasn't kidding! 

Love you all!

Kenny

All Because of Jesus Part 1

I hope you have all checked out our new theme song, “All Because of Jesus,” by now.  I first heard this song a few months ago on Christian radio and felt a connection with it at that time.  It really is because of Jesus I’m alive.  But in the past few weeks it has come to mind a lot.

The decision we made to go with the clinical trial recently for treatment was made after much prayer.  The trial would have two “Arms.”  Arm A would involve being infused with two chemotherapy drugs, Doxorubicin and Palifosfamide, while Arm B would only involve one, Doxorubicin.  Fifty percent of the patients would be in Arm A, while the other half would be in Arm B.  The placement would be determined strictly by “random selection,” done by computer.  A roll of the dice?  A lousy coin flip?  The luck of the draw?  Rock Paper Scissors?  To determine something this important?

Our first reaction was that we wanted to be in Arm A, so we could receive the best possible benefit of both drugs.  If we were going the chemo route, we might as well go for it.  God reminded us that there is no such thing as “luck” for us who belong to Him.  So instead of fretting and worrying about which Arm we would end up in, we chose to completely trust God to put us in the one we needed to be in.  That really took a lot of pressure off.  We received a call from our study nurse.  God had placed us in Arm B, the one with the one chemo, Doxorubicin.

Fast-forward a couple of weeks.  I received my first treatment on Monday, March 29, a twenty-minute infusion with Doxorubicin.  Had I been in Arm A, I would also have been given the other drug on the same day, as well as on Tuesday and Wednesday. 

Most of you know the reaction my body had to the chemo.  I ended up in the hospital for five days.  I believe that had I been treated with both drugs over a three-day period, I would have died.  I asked Dr. Mita if my condition would have been much worse.  She said it would have.  I told her I thought I would have died.  She didn’t say anything.  All I know is that both drugs had almost the same long list of probable side effects.  I believe that God Himself selected Arm B specifically and on purpose for me.  There is no doubt in my mind.  We believe that God used the many prayers of you all for us in a mighty way.

This is the short version of an account of the most recent time Jesus has saved my life.  It is all because of Jesus I’m alive!  Literally!  If you haven’t heard the song, click on the link on the right side of this page under “Our new theme song.”  I hope it moves you like it does me.

“God brings death and God brings life, brings down to the grave and raises up.”  I Samuel 2:6  (The Message)

 

 

WOW!!!!!!

WOW!!!!!!  WOW!!!!!!  I have never heard of an Easter egg drive until now.  We received two baskets full of eggs last night.  Every one of them contained something--Scripture strips, letters, sticky notes, poems, necklaces, artwork, candy, money, stamps, gift cards--a smorgasbord of encouraging words and uplifting thoughts.  Helen, Shan, Stef and I stayed up until after 1:30 this morning opening everything.  We read all of them out loud and cried a lot.  We are astounded by it all!  We are humbled by all that was said and all of the love expressed from so many people.  People came out of the woodwork, it seemed.  We just do not know how to thank all of you.  We don't even know where to start.  You all have encouraged and lifted us up!  Mike Bell said that if I wasn't the most prayed-for man in Texas, I had to be in the top five.  I really believe that might be true.  We just have been blown away by you guys and can't express how much we love you all.  "How can we thank God enough for you in return for all the joy we have in the presence of our God because of you?" (I Thessalonians 9:9)

Love,

Kenny, Helen, Shan, and Stef

Follicles No More

Just briefly...so you aren't in shock when you see me...I decided it was time Friday morning when I awakened gasping for breath because I was smothered by hair I had lost during the night on my pillow.  OK, but really.  I did get what was left of my hair removed because it was really getting to be a mess.  Oh, well, it's just hair.  And I really don't think many people will notice. :)

Follicles and More

Sorry we haven't posted in a few days...it has finally slowed down a little this evening. Things are going good. It was nice to see many of you at church last night. We are still very tired...the past two and a half weeks have been exhausting. The time at home and even at work has been refreshing. We are on the rebound.

I had a nice surprise Tuesday morning. I discovered that my hair is falling out. Although it happens in 98% of patients who take the drug I took, I had hoped that I was weird enough that it might not happen to me. After all, my allergic reaction and my severe blood count drop were both considered rare. So why couldn't I be one of the rare ones whose hair didn't go? Oh well, I suppose it's only gonna be half bad since, well you know where I'm going if you've seen me in the last ten years. I'm hoping to wait until next week to buzz it off, if it doesn't get too crazy. I have my barber lined up (YES, I HAVE A BARBER) to do it free. The way I see it, she has been charging me too much anyway. And they say that it is only temporary and may come back different than it was before. Maybe I'll have a full head of green or red hair when and if it returns.

I am so blessed to have such a great wife. The last three weeks (let alone the last six years) have been so full of difficulties. Helen's brother passing away in the middle of everything that was happening with me was tough. She has been amazing through all of it. Last week while I was in the hospital, she refused to leave me and go anywhere because she didn't want to pick up something that might hurt me (like germs or viruses) and bring it back into my room. I have given her more "for worse" than I had planned to, but she has always put me before herself. I am blessed, far beyond what I deserve. God is Good!

As I write, there is a storm moving through the area. We are so fortunate to have shelter and safety. Even more, we are blessed to have a shelter and place of refuge through the storms of life we face. "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say to the Lord, 'He is my refuge and my fortress, my God, in whom I trust.' " (Psalm 91:1-2)

Love you all,

Kenny

We made it!!!!!

Yaaaaaaaay!  We are finally home!  We hit WalMart at 10:10 tonight.  (NO, we didn't go in!)  It seems like such a long time...it's only been a week.  Time doesn't fly when you're not having fun!  But God is Good!

We talked to Dr. Mita for at least an hour today.  We talked about a lot of things, some of which I will share in the next few days, hopefully.  My ANC levels are as high as I have seen them in two years.  Praise the Lord!  We plan to be home for a couple of weeks and have another CT scan at that time.  After reviewing them with the doctor, we will discuss further plans.

Speaking of plans, we both plan on working tomorrow, so I will cut this short.  We are exhausted, but both feel well.  God has provided and protected.  Thanks for your prayers, calls, texts, comments, ...

We love you all

Kenny and Helen 

  

Happy Easter, Everyone!

We worshipped with First Baptist Church San Antonio this morning in our pajama pants and house shoes.  It was good, but we really did miss our church!  There's no place like home!  Thanks to Vern for filling in for me this morning!  

If we were home today, we would be hiding eggs for the girls to hunt.  I force them to hunt for them, because hiding eggs is one of my favorite things to do.  Thanks to my great nephew Noah for giving me a reason to hide eggs yesterday.

We got to see some rain early this morning.  I had almost forgotten what it was like.

We really have been blessed and encouraged by all of your comments.  We are looking forward to being back home tomorrow, the Lord willing.  Shan and Stef:  start cleaning house now!! :) (JK)

We love you all,

Kenny and Helen

Free At Last!!

Finally!  Freedom!  My blood work this morning was much better!  The white blood counts are up to 4.1 (thousand) and my ANC is higher than it's been in several months.  Praise the Lord!  Thanks to everyone for praying!

God's protective hand has been so evident in this past week.  I know I have probably hugged 100 people and shook 100 hands, at church and the funeral home.  How I haven't gotten sick is a miracle.  We have seen so many things that absolutely had to be the hand of God.  Ask us about it all, and we'll tell you.

We are now resting at Janis' and Don's house (our home away from home).  We have appointments on Monday.  We will be seeing our treatment doctor and discussing possible options for the future.  We have pretty much decided at the least that there will not be a second round of doxorubicin!  Please pray that God will direct our steps and reveal His will to us.

Today is Good Friday.  The greatest event in the history of mankind was unfolding on this day twenty centuries ago.   We have so much to celebrate.  We hope the magnificence of the Easter story will fill your and our hearts this weekend.

Shan and Stef, we really miss you.  

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In my first post, I want to warn you right off the bat...I get long-winded and like to write.  So, consider yourselves forewarned.  We have considered a blog for quite some time, but I didn't want to commit to one.  We decided it would probably be the best and easiest way to keep everyone informed of what's going on with us.  So here we go.

I'll start with what's happened since last Monday.  I received my very first chemo treatment with Doxorubicin on that day.  Aside from the hiccups that would last for three days, there didn't seem to be much of any side effects right away.  The next day, I was injected with Neulasta, a drug used to help build up white blood cells.  Because I felt pretty good, we headed for home.  Within hours I had developed a severe allergic reaction to the Neulasta, resulting in itching hives from neck to foot.  The hives would come and go for the next five days.  On day eight (this Monday), we were due back at CTRC for a checkup and blood work.  My blood work was terrible--my white blood cells and ANC were dangerously low.  My doctor decided to check me into the hospital to allow my counts to recover.   My immunities were almost completely depleted.

We are in a hospital in San Antonio.  Over the past few days, my blood counts have slowly rebounded.  Finally, today the counts are no longer dangerously low.  However, my hemoglobin level is pretty low.   There is the possibility that I may need a blood transfusion if this does not improve.  I should get out of the hospital tomorrow, however.

We have appointments scheduled here for Monday, so we will not be returning to Big Spring until after those.  We will be discussing on that day any future options we might have, so please pray for God to give us wisdom and discernment about His will for us.

God has so blessed us with a great place to stay while we are here, with Helen's sister and brother-in-law. We have had so many people call and text us.  We have so many praying for us everywhere.  We have so many friends and family who support and encourage us.   God is so good to us.

I will try to update on a regular basis on this blog.  Please feel free to share this address or any comments at any time.  Thanks for all of your prayers, calls and support!