In Pursuit

For ten long years, King Saul and his armies pursued David and his followers. I am sure there were times when David despaired of life. Day by day, the overwhelming power of his enemy sought to kill him. The outcome was inevitable.

Listen to the cry of David's heart in Psalm 22: My God, my God, why have you forsaken me? Why are you so far from saving me, so far from the words of my groaning? Oh my God, I cry out by day, but you do not answer, do not be far from me, for trouble is near and there is no one to help, My strength is dried up, I can count all my bones.

But something happened to David between Psalm 22 and Psalm 23.

Our God, the God of Abraham and Isaac and Jacob heard his cry and answered. David the prophet saw through the eyes of faith the armies of God Most High encamped around him. And in their midst stood a shepherd. David's shepherd. Your shepherd. My shepherd. A shepherd who would lay down his life for his sheep.

And instead of being pursued by Saul's armies, David could see clearly now as he spoke in Psalm 23; "surely goodness and mercy shall pursue me all the days of my life."

Val is being pursued by an enemy whose intentions are clear. And the words of David are her words. And the God of David is her God. He hears her cry. He answers. The Book is written. The story is ended. Although we haven't reached the final chapter, the Apostle Paul reminds us in his letter to the Romans of a promise from the author and giver of life; "And we know that in all things God works for the good of those who love Him, who have been called according to His purpose."

Val had a long day yesterday. Our 1:30 appointment was delayed 2 1/2 hours and then lasted another hour. Val's friend Mary Anne from Michigan flew in and showed up at the hospital appointment room with her suitcase in tow. What a group! We finally bailed and had a great dinner at an Italian restaurant in Hillcrest.

Everyone is suffering from information overload. Dr. Steven Rose has recommended that Val proceed with SIR Spheres to treat both lobes of her liver. This procedure is not without risk, the worst case scenario being liver failure and death. We are proceeding with caution. Everyone needs more information before this decision is made. I am hopeful that Andy Kennedy from Wake will provide his expert opinion based on experience with cholangio patients. Also, Char has contacted an interventional radiologist in Denver who has cholangio experience and is willing to consult with us.

We are moving ahead with exploring the option of moving Val's Oncology treatments from USC to UCSD Moores Cancer Center. Joannie Salotti, a Nurse practitioner is working for us on this. More than likely she will recommend Dr. Tony Reid. Nancy is working with a Nutritionist at Moores also. We have asked USC for a referral so insurance handles it.

Val will be getting a blood test tomorrow as the next step toward Sir Spheres. Then would come a PET/CT followed by arterial mapping and a shunt study. Good news is that Dr. Rose doesn't see much resistance from insurance companies on covering this off label treatment.

The results of Val's last CT Scan on 1/25 indicated no growth from the previous scan on 12/20. This falls into my category of good news.

I talked to Val's friend Tricia today. She is a cholangio patient from New York who has had the disease for 3 years. No stents. Her last Pet/CT showed that the liver tumors were DEAD! She is on Gemzar, Xeloda, and Avastin. There is still some cancer activity in her lungs. Her next chemo is at Cornell this Friday. She is trying to come out for a visit soon.

Val's next chemo is at USC next Thursday.

Please pray that God would give us great wisdom as we consider SIR Spheres and moving our oncology to UCSD. Also, pray that Val's ascites and pain levels would be reduced.

Godspeed

USC Day Update

We got in tonight about 5:00 pm. I think we had a good day as far as completing all the things we had to do.

1. Blood draw (problem with pulling blood from port, can infuse through it but can not pull blood) We hope next time the drug that they put in will allow it to work properly.
2. Met with Dr. Lenz. He said he is going to wait to see what the CT looks like from today to determine whether we add Gemzar or move with radiation.
3. Met with pain team at 1:00 pm. They are so nice. We tweaked a few things. Dropped the Phenergen (nausea drug). Keep with MS Contin 30mg/day X 2. PRN Dilaudid.
4. Had CT scan. I pray pray pray it looks good. Should know in a week.

I feel good. We stopped for IN n OUT on the way home. My Mom had made home made soup but I just could not wait. I am glad the stents, CT and Chemo are behind me. I want to just relax for a few weeks. My blood work looks good. My white count is up a little still but liver ALT and AST are good. 34 and 44. My CA19-9 went from 3,500 to 1,900. Bilirubin 2.6 and Alk Phos 150.
The one thing that bugs me is the ascites. Dr. Lenz said to up my dieuretic to 100mg. He said if it gets too uncomfortable he will drain it. He wants to avoid it if possible. I need to eat as much protein as possible to increase my albumin which plays a role and Avastin helps to decrease also (which I have not had in 5 weeks). So my biggest prayer request is for my ascites to go away.

I love you guys so much. You are all so good to me with your love, cards, meals, help with kids. I could go on and on. Have a great weekend! I am going to try to grab Chris away one night since we missed our 11th anniversary because I was in the hospital Jan 20.

Valerie XXOO

Mental Toughness

When New England played San Diego a couple weeks ago for the AFC Division Championship, Patriots Quarterback Tom Brady talked about the mental toughness that he calls upon when a game has gone terribly wrong. It did, he did, and they won.

Recruits for The French Foreign Legion, it's flag shown at the left, are sent to a camp in the Sahara Desert. The unbelievable training regimen has one purpose, to create a soldier with great mental toughness. If you had to go into battle, a Legionairre would be a great comrade-in-arms.

Article 6 of the Legion's Code of Honor says;

La mission est sacrée, tu l'exécutes jusqu'au bout, à tout prix.

A mission is sacred, you will carry it out until the end, at all costs.

The Apostle Paul had a mental toughness that transcended Tom Brady or any Legionairre. His was almost an out-of-body experience. He correctly viewed his physical existence as the temporary dwelling place it is. As long as he was "in the body", he would live each day "to lift up Jesus Christ." How many days that would be was not his concern.

King David exhibited extreme mental toughness when, as a teen with no military experience he faced the 9 foot giant Goliath of Gath. The bad outcome seemed too predictable when David spoke, "I come against you in the Name of the Lord Almighty."

I see this mental toughness in Valerie. Many of our young cholangio patients have died. And it is extremely hard to disconnect from them and press on. But disconnect she does and we who are closest to her are continually amazed at her resiliency.

When Val had her ERCP Procedure last Friday, contrast dye was accidentally injected into her pancreas. We still don't know the final outcome of this. One of Dr. Lo's fellows at Cedars said it "fried" the tip of the pancreas.

Val has been in a lot of pain. Today, she is struggling with ascites (fluid buildup) that has caused her ankles to swell up to the size of her calf. Walking is painful. She needs to keep her feet up but this is difficult with three boys around the house. Four if you count Chris.

I spoke to her a few minutes ago. She is frustrated because she feels mentally strong but physically there is a decline.

We have a long day at USC tomorrow. Blood draw at 0900, Lenz consult at 0930, chemo 1000-1200, Pain Management with Dr. Ryan at 1300, CT Scan at 1400. We will be back on Avastin, 5FU/LV and Tarceva. I am going to ask Dr. Lenz about adding Gemcitabine.

Regarding Yttrium SIR-Spheres, I spoke with Dr. Andy Kennedy from Raleigh-Durham, the GURU of this treatment. He doesn't see any reasons why this won't work for Val. He also indicated that Dr. Rose at UCSD is the most experienced guy on the west coast. We have an appointment with Dr. Rose next Tuesday.

Eleanor, Nancy's friend with colon cancer met with Val today. She has used Ambrotose, a supplement, to reduce her tumor mass.

Prayer resuests:
1. Pray that Val's ascites would go away. It is tied to her albumen level and the dieuretics she takes. I think the dosage should be increased to 150 mg.
2. Pray for wisdom for Dr. Rose on decisions regarding SIR Spheres.
3. Pray for wisdom for Dr. Lenz in our chemo consult tomorrow. Pray that she can have chemo with her 7.0 hemoglobin level.
4. Pray that Val's chemo port would not plug during blood draw tomorrow.
5. Pray that Val's pancreas would recover from the contrast dye.
6. Pray that Char can successfully navigate the insurance maze for SIR-Spheres
7. Pray for wisdom on the correct dosage of Ambrotose.
8. Pray for Chris' health

I am confident that God's will is for Val to watch her sons grow up. At the same time, however, I have encouraged her to write down her final wishes on all aspects of how she wants us to continue if God calls her back to her home country. This is no death wish. Our God is a God of order. He is honored when we acknowledge our frailty by leaving specific instructions for those call upon the name of Jesus and confess that we are pilgrims and strangers in this land.

In the meantime, beloved, in the matter of Val's life, I choose to follow Article 6 of the Legionairres Code of Honor; A mission is sacred, you will carry it out until the end, at all costs.

Mental toughness. May God Most High grant us all this attitude of discipline.

Thank you for your prayers.

A Tough Battle

Almost everything that could went terribly wrong today. Unbelievably I made a two hour error in the appointment time. Val was struggling with fasting after midnight and dehydration. They finally fit her into the schedule. Unfortunately Dr. Lo thought we weren't coming because of a mis-communication in an e-mail I sent him the night before.

They had difficulty getting the tube to the liver. When Val woke up she was in Level 10 pain, the highest on the scale. An x-ray was done to determine the cause. Dr. Lo told her she couldn't go home today so she was admitted. An ultrasound and ascites fluid sample will be done tomorrow.

Nancy can't go without her daily meds so Julie, who was en route from San Luis Obispo did a U-turn at San Clemente to go back to Beverly Hills and pick up Nancy. I had to go to San Marcos to take care of the kids.

Julie is spending the night with Val in the hospital. Nancy and Chris are en route back to San Marcos.

We will have to wait and see what tomorrow brings.

A Long Day Begins

This is a picture of 1 Peter Bay, Char and Michael's house on the island of St. John. The beach is just behind me in this photo. Char continues to be an invaluable resource in our battle against Val's disease. Enjoy the weather babe! A bit warmer than Colorado, eh?

As I write, Val, Chris, and Nancy are leaving for an 0930 appointment with Dr. Simon Lo at Cedars Sinai. An ERCP will be performed to remove and replace (3) plastic stents in Val's biliary tree. This is a long outpatient day. Although not as invasive as surgery, it is very difficult. A tube is sent down your throat and somehow finds it's way into the liver. It removes the old stents, inserts new stents, looks around, and performs clean-up operations. All in about two hours.

Even as I describe what I think happens, it seems surreal, unbelievable. All I know is that Dr. Lo is one of the best. Please pray that God would enhance his skills as this procedure is not straightforward.

Pray that Val would recover quickly and that these stents would perform flawlessly for their intended life of 3 months.

Pray also for safety for my daughter Julie, who, at this hour, is leaving San Luis Obispo by car. She is scheduled to arrive at Val's home in San Marcos at 2 pm today.

Finally, pray for my son, Jeff, a Lt. Colonel in the Air Force. He just received orders to report to the Korean Peninsula where he will be in charge of squadrons of F-16's. Pray also for his wife, Janet, and their children, Josh, Jessica, Jerrod, and Justus. Jeff is on the right side in the second row of the family picture at the top of the blog. Don't miss the fact that dad still has more hair than Paul and Jeff!

Godspeed

Glory

God Most High appeared to King Solomon one night and said, "ask for whatever you want me to give you."

Solomon didn't ask God for 24 hours to consider his response. He answered immediately from his heart. "You showed kindness to my father David before me. You have made me king over your chosen people, Israel. Give me wisdom and knowledge to lead your people."

God answered, "Since this is your heart's desire and you have not asked for wealth, riches or honor, nor for the death of your enemies, and since you have not asked for a long life but for wisdom and knowledge to govern my people over whom I have made you king, therefore wisdom and knowledge will be given you. And I will also give you wealth, riches and honor, such as no king who was before you ever had and none after you will have."

If God were to appear and present this offer to me today, my answer would be, "please make my daughter, Valerie, a powerful witness to the truth." I think God likes short answers.

This was Jesus' last command to us before He ascended to the Father. You shall be my witness to the ends of the Earth. He was a faithful witness and now it is our turn. For the redeemed of God, every moment of every day you are commanded to be a witness for Jesus Christ. That's it.

Last Friday, we met with Dr. Sue Hanks from USC to discuss using Sir Spheres to kill the tumors in Val's liver. USC started doing this procedure last November. Dr. Hanks has done it twice. We are not aware of anyone who has used it for cholangio on the west coast.

The use of Sir Spheres is a door that God has bid us to open. We have opened it and walked through. There are more doors yet to be opened. Albumen level must be above 2.0. A shunt study and arterial mapping must be done.

We have contacted several doctors around the country who are experienced with this procedure. Dr. Imigawa from UC Irvine, Dr. Kennedy from Wake Radiological Oncology, Dr. Salem from Northwestern, Dr. Geller from U. of Penn.

We have an appointment with Dr. David Rose from UCSD on 1/30. So far, it looks like he has the most experience in Southern California.

Charlene is working to get an approval from the insurance company.

Our goal is to get enough information to make a decision on the use of this procedure in fighting Val's disease.

Val continues to be troubled by pain, fatigue, and ascites. She has a stent change scheduled for this Friday at 9:30 am. at Cedars Sinai. This is a long outpatient day.

A CT scan and pain management appointment at USC was re-scheduled from tomorrow to next week. At this point, it looks like we will also be cancelling her shunt study and arterial mapping scheduled for 1/23 at USC. I know these committments are tough to keep but I hate to see us lose any ground in this battle.

Also, Nancy is working on finding the right dose of Ambrotose, a holistic medicine. Finally, we are looking at Low Dose Naltrexone that apparently has been used as an immune system builder.

There are so many sides of this war that it sometimes gets overwhelming, especially for Valerie. Please pray that we always remember that our God is with us in the unseen world of our lives. He sees the doors that are yet to be opened. He bids us to come. To open the door. To trust Him with all our tomorrows.

In I Corinthians 13:12, Paul makes the giant leap from time to eternity; "Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. And now these three remain: faith, hope and love. But the greatest of these is love."

Why, Paul, is love the greatest?

Because you take it with you to Heaven beloved.

And we shall behold Him.

In the Rogers & Hammerstein musical "Carousel", there is a song whose lyrics speak of lost opportunities. Don't miss your golden moments today.

If I loved you Time and again I would try to say All I’d want you to know
If I loved you Words wouldn’t come In an easy way Round in circles I’d go
Longing to tell you But afraid and shy I let my golden moments Pass me by
Soon you’d leave me, Off you would go In the mist of day, Never never to know How I loved you
If I loved you

May all praise and honor and glory go to the immortal, invisible God of all ages.

My Boys

Of course I have a lot on my mind and do not look forward to the month of January. The Theraspheres conversations, stents, chemo etc.... have me a bit worried. Crystals being sent through one of your major arteries to your liver does not sound fun. We have our consultation on Friday to see if it is a move a head or not. I have 100 questions.

I miss all my friends on the blog. It seems as though I have been so busy I do not see many of you face to face at least. I did go to breakfast today with Tami, Kerri and Osil. It was good to see you. Tami - I can not believe your finger. It looks almost unreal the way the ligament is torn. I hope to be at Moms in Touch tomorrow. I have not been in so long.

I have been feeling OK. The ascities is what bothers me. It pushes on my liver and makes it hurt. I am taking 3 diuretic pills now. Maybe this will help. My boys have been doing great at school and seem happy but they are well aware of what goes on with me and I think I under-estimate the emotional effects on them. We have looked into some counseling. We will see.

Prayer requests-

1. Ascities to go down
2. Theraspheres is a good idea after our consult Friday
3. I can handle chemo
4. Quality time with Chris and kids.
5. Mom's hip to knee pain gets better and give her more energy.
6. Chris' work continues to go well.
7. Safe trip for brother coming to visit 1-16 through 1-24.
8. My emotional wellness. I am looking for a support group to get into. I think it would be good for me.

God Bless all of you!

Val

A Long Day At USC

We left Stone Canyon for USC Norris at 6 am yesterday. After the obligatory stops for gas and Starbucks, we arrived USC at 8 am for a blood draw. As Val suspected, her port was clogged and they had to stick her vein to get the sample. Not good. Then back to the Day Hospital to get the port cleaned. Then off to the waiting room for our consult with Dr. Lenz.

Count Dracula from the Lab came back out and told us they needed more blood. Not Good. Fortunately they decided that they had enough blood and a 2nd stick wasn't necessary after all.

Val's weight was good at 119. Her temperature was 97.5. Some of the weight gain may have been caused by fluid retention, however. Her CA19-9 tumor marker was up to 3,357. Not good. I think we all agreed that the last CT showed slight growth of the disease.

USC has recently started using Theraspheres for treating large tumors. Dr. Lenz suggested that we have Dr. Sue Hanks, an Interventional Radiologist review the last CT Scan to determine if Val is a good candidate.

Theraspheres are microscopic glass beads with radioactive Yttrium attached. A catheter is inserted until scans show that it is positioned just upstream of the blood supply to the large tumor in Val's left lobe. The Theraspheres are released and get stuck in the tumor. The Yttrium then kills the cancer cells.

Last night, I asked the Lord to pave the way for Val's approval as a Theraspheres candidate. This afternoon I received an e-mail from USC saying that she is approved. We are calling for our first appointment next week. Please pray that insurance covers this treatment.

Val is scheduled for a stent change in two weeks with Dr. Lo at Cedars Sinai so Dr. Lenz held off on the Avastin infusion since it can cause bleeding. He did, however, note that she was dehydrated and ordered infusion hydration, a 3-hour procedure. She also received the 5FU/LV 48 hour pump Infusion.

Later in the afternoon, we met with the pain management doctor, a nurse practitioner, and two interns. A very profitable session with specific regimens to follow. Going forward, we will be meeting with them regularly.

Val's blood work: Bilirubin good, liver enzymes good, WBC bad, indicate she is still fighting infection, hemoglobin good, Albumen bad, not enough protein being absorbed.

Ascites (fluid retention) is a continuing problem related to low albumen levels, caused by protein deficiency. Please pray that we can make progress on this through additional protein and 75 mg. dosage of diuretic.

Also, please remember Val's dear 5 year old son Gavin. He is intelligent, sensitive, and very aware of the seriousness of Val's disease. The other night he told us he was going to call 911. We told him this was for emergencies only. He said, "my mom's cancer is an emergency." Gavin is having problems reaching the pottie on time. Please pray for him.

Reading an article in U.S. News yesterday on the behaviour of good business and military leaders , I noted a common philosophy employed by these men and women, "IT'S BETTER TO ACT QUICKLY ON AN IMPERFECT PLAN THAN TO INTRODUCE A PERFECT PLAN TOO LATE."

A good philosophy for business, military, and doing battle with cancer. Please pray that we can quickly execute our plan to use Theraspheres.

Godspeed

How Then shall We Live?

Many of you have posted comments assuring us that Val will be healed. And you are right. But the truth, beloved, is that we just don't know if this will manifest itself by the hand of God reaching down to tear this disease out of Val's body. This is the daily prayer of our heart and we honor God by laying it at His throne. He never tires of repetition.

But we who are close know that this enemy, cholangiocarcinoma, is a deadly adversary. The medical world consider it a terminal cancer. Treatable, but not curable. I wish I could find just one five-year survivor on the planet.

There are no shortage of voices screaming at us from Germany, Mexico, or Thailand that they alone have the magic bullet cure. Some even suggest a conspiracy theory, claiming that the medical community is trying to hide these "cures".

At the risk of being harsh, the words of Jude 1:12 apply to those who push miracle cures; These men are shepherds who feed only themselves. Clouds without rain, blown along by the wind; autumn trees, without fruit and uprooted—twice dead.

As Yoda would say, discouraged are you? Don't be. We lift up our eyes unto the hills and ask, From whence comest our help? Our help cometh from the Lord, Creator of Heaven and Earth.

On this second day of 2007, consider the question posed by Francis Schaeffer, "How Then Shall We Live." The answer is simple. Live with purpose. Live life to fulfill your destiny. Live life as a journey. Every day, every hour. Look for the hand of God at work. King David spoke truth when he said, "better is one day in your house than thousands elsewhere."

The Apostle Paul understood this. He left us a trail of cookie crumbs to follow.

In the city of Troas, close to modern Istanbul, the Apostle, knowing that he would leave these Macedonians the next day and never see them again in this life, spoke until midnight in a heated upper room. A young man named Eutychus, sitting in the window, fell asleep and plunged to his death. Paul went down, threw himself on the young man and said, "don't be alarmed. He is alive!"

Had we been there that night, I am sure we would have seen the friends and relatives of Eutychus run down to the street ahead of Paul, only to find the broken body of a young man who, moments ago, was alive and vibrant. The Apostle, on the other hand, would certainly have stayed behind to petition the source of all power for guidance. I am sure that God Most High spoke audibly to Paul with detailed instructions on how to bring this man back to life.

Then they went upstairs again and broke bread and ate. After talking until daylight, he left. The people took the young man home alive and were greatly comforted.

Paul lived his life as a man of destiny. These would prove to be his last days of freedom. God had made it clear that he was to go to Rome by way of Jerusalem. He faced lynch mobs, a treacherous sea journey and imprisonment in Nero's Rome. And from his cell in The Mammartine Prison, he wrote what should be every christian's confession:

For me, to live is Christ and to die is gain.

This is no death wish, only a statement of fact. Paul's life, my life, your life, Val's life is in the hands of God Most High, the Ancient of Days. Those who confess that Jesus is Lord are children of destiny. Every day. Every hour. Until Jesus returns or we go to be with Him.

And so we are back to the beginning beloved. Pray continuously that God would wrench this enemy from Val's body to His praise and glory. He never tires or grows weary of repetition.

Godspeed