Friday, September 26, 2008

Will not . . .

The CT scan of Daniel's chest, abdomen, and pelvis were completed this afternoon, and they brought troubling results. The lesions in his lungs have grown, and there are more now than before. His liver and spleen also contain lesions.

The doctor said there is always the possibility that these lesions are infection and not cancer, but she doesn't really believe that. She said she could do a lung biopsy to be sure. But that's not what Daniel wants. Medically, there aren't many options.

Daniel can choose to begin chemotherapy next week (but his body may not be able to handle it), or he may elect to go home with adequate pain control and consider taking a similar chemo in pill form through his feeding tube. He may also decide he's tired and do neither. We will support whichever path he wants to take. Those are tough words to write, say, think, and believe; but they're what he needs.

When I asked Daniel what he wanted me to write about how he feels, he said to tell you all, "We will not stop trusting God to do His will." Oh, what a man of faith!

Daniel and the family need your prayers as we continue this journey.

Please continue to help us pray for miraculous healing.

As a friend pointed out to me, no matter what happens, it will not change the character of God! God is good. He is faithful. He is always right. We will love Him, praise Him, serve Him!

Thank you all for loving my Brother . . .



When the doctor came in to tell us about yesterday's test results (which were pretty good - some white cells but no bacteria in the fluid), the news was overshadowed by the fact that they found two new spots of cancer in his hip. This is heartbreaking because it means that "the cancer is behaving badly" in the words of the doctor. He will have more CT scans today to rule out infection in his chest, abdomen, and pelvis; obviously, they will be looking for other tumors as well. Daniel will also have an ultrasound of his legs to rule out blood clots as a possible source of infection.

The most pressing matter is to find and fight the infection in his body. If infection is found in the hip, then the question will be whether to fight it with antibiotics alone or to go back to surgery. If surgery is not required, Daniel can begin chemo soon; however, if surgery becomes necessary, chemo will have to be started later. If the infection is elsewhere, I suppose antibiotics will be the method of treatment.

Our hearts are heavy today, but we must continue to fight with Daniel. He is determined. He wants to continue cancer treatment. We want what he wants. PLEASE stand with us in prayer!

God bless you all as you have blessed us.


Wednesday, September 24, 2008

Come forth as gold

Since I last updated you on Daniel's condition, he's been tested once again. On Sunday morning, he began having excruciating pain in his hip and leg, he had a fever, and his output was scant despite having had several liters of fluid. I spoke with Dr. Gilbert who was concerned that Daniel might be in renal failure. (Thankfully, that was not the case.) She suggested we take him to the ER at Vanderbilt and said he would need to be admitted for hydration and tests. We went through the whole ER process, and Daniel was admitted to the hospital late Sunday night.

Since that time, his doctors have done a number of tests to determine if/where he has infection in his body. There has been some disagreement among them, but they finally decided that Daniel should undergo a procedure today to remove some of the fluid that has collected in his hip since his surgery. They can see several pockets of fluid on CT scan, but they aren't sure if it is abscess or just normal post surgery change.

Unfortunately, the procedure was not a complete success today. The radiologist was only able to withdraw a small amount of blood from the hip joint. He told me sometimes the fluid is so thick it cannot be removed with this procedure. They may try another method using a CT scan along with bigger needles than he used today in x-ray. He did send the blood to the lab to be cultured, but he doesn't really expect to get a definitive answer this way. He said surgery may be the only option to remove the infection completely along with more antibiotics. (The surgeon doesn't think the fluid in the hip is infection; we'll have to wait and see.)

While in the hospital, Daniel has continued to have periodic high fevers - one as high as 104.2. His pain level has been off the charts at times, but it is better controlled right now. Since he is feeling so bad and is sleeping much of the time, he has not asked for visitors yet. He hopes to be better soon so that he can see his friends and family.

Prayer requests:
1. healing
2. pain control
3. less time asleep so he can communicate better (He really wants this.)
4. Mr. Carroll
5. God to be glorified

Just so you know, Daniel hasn't given up. He's being tried, but his faith remains strong.

God's best to you all,


"But He knoweth the way that I take: when He hath tried me, I shall come forth as gold." -Job 23:10

Friday, September 19, 2008

God's show

We saw Dr. Gilbert on Wednesday as scheduled, and the visit went pretty much as Daniel explained in his last post. She said she doesn't know for sure if there is still tumor on Daniel's tongue - Daniel believes there is due to his increased pain - but she said it won't change his prognosis or treatment either way. We are supposed to see Dr. Netterville next week for a more definitive answer about this.

Dr. Gilbert said Daniel could begin a new chemotherapy regimen today. We came home Wednesday evening with our minds all set to get started. We'd only been home a short time when Dr. Gilbert called and said Daniel had hypercalcemia, a high blood calcium level. It was serious enough that she said we either had to bring him back to Vanderbilt for fluids or he must drink or take into his feeding tube at least one liter of water that evening. She said the condition was caused by the cancer itself and/or dehydration. We had a couple of liters of fluids left from when Daniel was taking IV fluids at home a few weeks ago, so a dear friend came by to start the IV for him. Dr. Gilbert wanted Daniel to return to Vanderbilt yesterday to receive more fluids and a special medication to treat his hypercalcemia. We kept that appointment, and everything seemed to go well. Our nurse cautioned us that some patients develop a fever after taking this medication.

As I said before, Daniel's tongue pain had worsened, so Dr. Gilbert increased one of his pain medications on Wednesday. By yesterday evening, Daniel was quite confused, and we were worried enough to call his doctor. She recommended that he be seen in the local ER since there was a possibility that his calcium level was still too high, clearly a serious problem. She also said it might just be the increased pain medications. Daniel was seen at a local hospital, and the doctor said his calcium level was definitely too high. He was admitted overnight for IV fluids and a diuretic to help rid his body of the excess calcium. His pain medication was also adjusted. He continued to receive fluids throughout the day and was discharged this afternoon. Upon discharge, he had a temperature of almost 101, and that was attributed to yesterday's medication.

By the time we got Daniel home and settled this afternoon, I noticed he seemed hot. We checked his temperature and were alarmed to find it at 103.5. We gave him ibuprofen and then phoned his local doctor. He said if the medicine didn't bring down the temperature within an hour we should call Dr. Gilbert to see if she wanted to evaluate Daniel. Thankfully, the fever subsided. I should say, though, that Mom asked if anyone had prayed about the fever. To be honest, none of us had, so she led us in a prayer asking God to reduce the fever. It's 10:35 p.m. right now, and his temperature is 98.6!

These few days have been eventful and difficult for Daniel. He was so anxious to begin the new treatment plan. I told him it was only a temporary setback. He said, "It's okay; it's still God's show!" Indeed, it is.

Please pray that Daniel will be well enough to begin treatment soon, that his side-effects will lessen, and, as Daniel, says, that God be glorified above all!

God's best to you all,


Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD. -Psalm 27:14

Monday, September 15, 2008

Three times a day

Do you really believe He created us?
Do you really believe He parted a sea for His people?
Was He the muscle behind the little boy who defeated the giant?
Was He the fourth man loose in the fire?
Did he shut those lions' mouths?

King Darius sure was convinced. Shortly after the event took place, he wrote to all his people:

"I issue a decree that in every part of my kingdom people must fear and reverence the God of Daniel. For he is the living God and he endures forever; his kingdom will not be destroyed, his dominion will never end. He rescues and he saves; he performs signs and wonders in the heavens and on the earth. He has rescued Daniel from the power of the lions."

Since I last communicated with you, the ride sure has been bumpy. As most of you know by now, we made it home from the unfortunate pupil incident without too much drama. I was released from the hospital on Friday and have been resting at home since. The source of my increased mouth pain, my fatigue, and my not-so-normal blood work remained a mystery as we were not offered definitive answers at the time of discharge.

Today, things became a bit clearer. We saw my radiation oncologist who believes that there is resistant tumor on my tongue and probably in my neck. This, at the very least, explains my increased pain. He had spoken with the orthopedic oncologist, and they agree that radiating my right hip, which had been the plan, is no longer in my best interest. Since the orthopedist is certain he removed all the tumor that is there currently, both of them consider it better to proceed with attacking the resistant tumor in my oral cavity and neck along with my lungs (it was mentioned in an earlier post that I have about 10 small nodules in both right and left) first. The hip is not an imminent threat now, but the tongue, neck, and lungs are.

The plan is for me to see my oncologist, Dr. Gilbert, on Wednesday. She has already discussed possible trial therapies. Nothing she has to offer me is considered curative, but she believes we can add to the length and quality of my life possibly. We will further discuss these trial therapies along with a plan for moving forward on Wednesday.

Some of you might expect me to go quietly at this point, which is really one of the main reasons I write tonight. Why is it hard to believe that God can heal me from extremely aggressive cancer when we have no doubt that the same God created this universe? Like my sister said, "God is still so much bigger than all of this!"

I love all of you. Keep praying and believing. It is not naive - it is a chance to interact personally with the one true, living God.

Three times a day he got down on his knees and prayed, giving thanks to his God, just as he had done before. -Daniel 6:10

Thank you for getting on your knees for me.

Thursday, September 11, 2008

There is always, always something to be thankful for

Finally . . . encouraging words!

For most of the day, Daniel's pupil continued to be dilated abnormally. As the day wore on, though, it slowly returned to almost normal size. The neurologist said there might be one millimeter of difference between the two. All of the doctors who saw Daniel found no neurological problem and no evidence of tumor behind his eye. The general consensus is that Daniel accidentally rubbed his eye after touching the patch he wears on his neck for mucus control. The drug in the patch caused the pupil's response. After the worries of yesterday, we rejoice at such good news.

Daniel has continued to have tremendous pain upon swallowing today. It took the team of doctors until about 7:00 p.m. to get his pain under control, but they worked diligently, and now he feels much better. He has even talked and drunk water this evening, both of which were nearly impossible earlier in the day.

Since the pupil issue seems to be resolved, Daniel will most likely be discharged as soon as his pain is again under control. Instead of thinking about going home tonight, we could be considering treatment options for a nasty tumor.

As a dear friend often reminds me, there is always, always something to be thankful for.

Thank you so much for supporting Daniel in thoughts and prayers from your homes and understanding that he needs rest during this hospital stay.

Prayer requests:
1. Healing.
2. Mucus and pain control.
3. Continued bed rest when he gets home.
4. Strength and faith to begin new treatments.
5. Everyone who's suffering with an illness.
6. God's will - always.

God's best to you all . . .


"O give thanks unto the LORD; for he is good; for his mercy endureth for ever." -I Chronicles 16:34

Wednesday, September 10, 2008

Strong in the Spirit

The last few days have been rough on Daniel. He's struggled with a fever and a few other symptoms suggestive of some type of infection. One of his colleagues ordered some tests yesterday. The chest x-ray indicated a possible slight pneumonia, but it was difficult to be sure due to the nodules that are also present. To be safe, he was started on an antibiotic. The fever waned throughout the night, but Daniel never really felt better. In fact, by this morning, he felt really bad, his mouth pain was worse, and the mucus was still persistent.

We were scheduled to see Dr. Gilbert today as well as the orthopedic surgeon (for surgery follow-up and stitch removal). What we had expected to be a normal office visit with Dr. Gilbert quickly turned into something altogether different. While Daniel's vitals were being checked and just before we would have been taken to a patient room, I noticed that his right pupil was extremely dilated (the left one appeared normal). When I say extremely, I mean there was very little blue left. I told the nursing assistant that we needed to see someone right away. The nurse came quickly and looked at Daniel's eyes. She could not hide her worry. Dr. Gilbert came out next, examined his eyes, and told the nurse to set up a CT and an MRI immediately. Her fears, too, were apparent. We were then taken to a room where Dr. Gilbert explained that there could be a tumor behind Daniel's eye or perhaps a blood clot. Always positive, she said it was also possible that he had touched his scopolamine patch (used for mucus control) and then rubbed his eye. I must admit I feared this was just a glimmer of hope to help us get through the tests. Not that she's dishonest. She truly meant that was a possibility; I just didn't believe she thought that would be the case.

As soon as the tests were ordered, the nurse wheeled Daniel to radiology. Actually, she sprinted. Even with my long legs, I had trouble keeping up without jogging! Of course, her sense of urgency worried me more. Daniel made it through both tests, but his pain was moderate to severe. Lying flat on a table for a scan doesn't go well with a mouth full of mucus. We returned to the cancer clinic to hear the results. The CT results were in first and did not show any problems. Praise the Lord! While we waited for the MRI results, Dr. Gilbert sent Daniel to the infusion clinic to receive fluids and a few medications. Soon, she came by to report that the MRI was also negative. Another praise! She stated, though, that the problem was still present and she needed to find out its cause. Daniel had already told Dr. Gilbert earlier today that he needed to be admitted; she agreed and said she would have someone from neurology see him while he's inpatient.

For now, Daniel is resting. His pain is controlled at the moment. It's so good to see him sleep. On that note, I know all of you who can would like to visit Daniel while he's in the hospital, but this time, he just needs to rest. He will look forward to seeing all of you again when he has had time to recover.

Daniel hasn't been able to talk much lately, so I've had to be his voice. I knew on a couple of occasions that if he could speak he would ask some of his caregivers if they knew Christ. I can't say I've always been as bold as my brother in that regard, but I'm learning from him. Anyway, when I felt that I should, I asked for him. While Daniel was getting a chest x-ray tonight, I had a few minutes to speak to the nurse about the Lord. When I told Daniel she was a believer, he raised his hands to heaven in praise. His body is weak, but he is strong in the Spirit. If you know Daniel, you know that none of this is new for him.

God bless you for your prayers.


" . . . the joy of the Lord is your strength." -Nehemiah 8:10

Friday, September 5, 2008

Big praise!

Robert's surgery went so smoothly - listen to this big praise. He didn't even require any tongue reconstruction. There was no need for a flap or graft! He is eating today already!!! Thanks for your prayers and praise our gracious Papa!

Enjoy this blessed day,

Thursday, September 4, 2008

God is STILL - EVEN STILL my doctor

Just a quick update to relay my test results. More from the heart will come later, God-willing.

CT of the brain was negative.
As expected, since oral cancer usually spreads from head to neck to lungs, etc., there are about 10 small nodules in my lungs consistent with metastatic disease.
The abdominal CT was clean other than a possible spot on the liver. It could be metastasis, but it could also be a hepatic cyst, which is pretty common.

This news does not change the treatment plan. As soon as Dr. Gilbert thinks I am strong enough, she will begin my next round of chemo.

More to come later, but I wanted to get this information out as quickly as possible.
Just remember, God is in control, and He is still my doctor - even still. I love Him SO much - not nearly as much as he deserves, though.

One more thing I have to say. I know it's possible that some of you reading feel sorry for me. You wonder when I will ever just accept what the doctors are saying and give up. What God says is what interests me. Trust me, I understand my medical, human outlook - it's about as grim as they come. There is something we must remember, though. God numbered my days and ordered my steps. He will heal me in one of two ways: I will be cancer free or I will be free in Heaven thanks to the sacrifice of Jesus, the beautiful one on the cross.

I love you all. Hope to talk with you really soon.

God is STILL my doctor

It's been a while since we've talked, and I've missed you. Brother always does an immaculate job, though, and I was a touch busy as you know.

For those of you wondering, I am doing well where the hip is concerned. It is sore, of course, but I am walking very well with walker or crutches. Sometimes, I almost forget that I need them, so I expect to be back to my normal self where that is concerned very soon.

My most notable physical ailments at the time are my mouth sores and mucus. I know this will seem unbelievable to those of you who visited me in the hospital as I probably talked you into the floor below us. You must understand, however, that I had been given a medicine during surgery to decrease my mucus (a medicine that apparently is available only in IV form) which was very successful. Also, I was on fluids constantly, which tends to help. Finally, I just think God gave us that time together - the most important variable. Since getting home from the hospital, things have changed dramatically. My mouth is flooded with mucus and hammered by sores. I am 4 weeks out of radiation today. The radiation oncologist told me I would be much better in 6 weeks - I really hope he is correct. Right now, I am back to writing notes or typing them on computer. Talking just seems to make the sores hurt worse, and the mucus makes it very difficult, as well.

I had a follow-up appointment with Dr. Gilbert, my oncologist, yesterday. As you will recall, she explained before the hip surgery that with the metastasis, our strategy would have to change from curative to increasing the quality of and prolonging my life. My chances of cure from a medical standpoint went from 40% to 0%. Yesterday, she offered a time frame. She stated that if my cancer "follows the book, and it never has," I could expect to be here about 6-9 months. Of course, since my cancer has been much more aggressive than expected at every turn, that could be a much smaller number.

We then discussed the new treatment plan. I will need focused radiation to the right hip to avoid tumor return there and for pain relief (about 2-3 weeks of treatment). As soon as my energy and strength are improved, I will begin another chemotherapy regimen designed to keep would-be tumors at bay. If these drugs are unsuccessful, there are clinical trials available, as well. Dr. Gilbert stated she has seen these drugs have no effect, but she has also seen them give a patient in my shoes 2 years. If at any time during treatment, the treatment becomes worse than the cancer, we will stop it and do something else. She made it very clear that I would be in control of the process.

She also ordered CT scans of my head, chest, and abdomen yesterday to search for further metastasis.

What I want you to remember is that we already knew the earthly prognosis was this grim. We knew it as soon as we found out about the metastasis. Having a number does not change anything, because no one but God can guarantee a number anyway. Also, while the medical world tells us there's no hope, I'm reminded that with God there is always hope. Remember an earlier post where a friend had pointed out to me that God is my doctor? God is still my doctor! He is unimpressed by the cancer book.

My family and I have not given up hope on our miracle. We know that if God so chooses, He has more than enough power to heal me, and we continue to ask Him for complete healing. We do acknowledge, though, that healing may not be His will. Whatever His plan, know that it is perfect. It may not fit our idea of perfect, but perfect it remains. His glorification matters most. May He be glorified in my life or in my death.


1. My friend Robert is in surgery now (9/4). Pray! Wife's name is Kim. 2 sons. Same cancer as me - caught earlier we hope.
2. Mr. Carroll - battling oral cancer.
3. Relief from mouth sores and mucus - I want to eat real food with family and friends again!
4. Continued hip healing and success with walking.
5. To get to go back to work on some level as soon as possible.
6. To bring glory to the Father each day.
7. Unwavering faith and trust in the One who is mighty to save.

1. God, our Papa, is beautiful, strong, good, and constant!
2. Remember that song, "Oh, How I Love Jesus?" Oh, how I love Jesus!!!
3. God doesn't sleep.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. -Matthew 6:34