Wednesday, June 23, 2010

Update

Lydia here:) First of all, let me say that I am so sorry I haven't gotten to part three of Mom's story yet. I know some of you are really wanting to hear the whole story. I've had sick kids and a busy life for the past few weeks and sitting down to type hasn't been a priority. If you want to see something I've written lately, check out my Father's Day post over at The Mommy Pages .

I will finished Mom's story when I get back from vacation, but for now, here's an update on Dad's condition to better let you know how to pray.

1st - Daddy started his pre-radiation chemo on Sat, Jun 19. He takes the drug Temodar, chemo especially for GBM, for 5 days

2nd - He had his post-op with the surgeon today. The surgeon feels he is doing great. We told the surgeon that we now had a better understanding of the term "resection". Before the surgery, he kept saying he hoped to be able to remove the tumor and do a resection. After the surgeon he told us the tumor was well defined and had white matter all around it and that he was able to do a good resection. Meaning = remove some of the normal brain matter. That means Daddy is now missing some of his brain! Of course, they are very careful with what they remove and the location makes a big difference as to what they can remove. So, Daddy is doing GREAT!

3rd - Mom and Dad saw the radiation oncologist yesterday. He laid out the plan for radiation. Daddy will have IMRT (Intensity modulated Radiation Therapy), and advanced type of radiation therapy that delivers high doses of radiation directly to a very targeted area. The radiation will only be given to the tumor bed and 3 centimeters around in the normal tissue. Daddy will have 30 treatments in all. We will go 5 days a week for 6 weeks to the Cancer Centers of NC in Raleigh for treatment. He will also be taking a different dosage of Temodar while doing radiation.

4th - We went back to the Cancer Centers today for his initial setup. He has a CT scan of his brain. It will help determine exactly where to aim the radiation. He also was fitted for his radiation mask, a mesh like mask that molds to your face. They mark it and then aim the radiation at the marks. You can Google radiation mask to get a better idea of what they look like.

4th - We return on July 1st for his final radiation setup called a simulation. The doctor will have looked at his CT scan and determined the exact course of action.

5th - July 6th will be his first radiation treatment. The treatment itself only lasts 5 or 6 minutes because of the type (IMRT).

During all of this we will be seeing his regular oncologist and neurologist for appointments. We've been given all of the warnings for radiation - hair loss, burned scalp, lower immune system. We will need to be very careful that Daddy does not come into contact with anyone who is sick, even with the sniffles. There are all kinds of others side-effects.

Keep praying. He is doing so well we keep asking ourselves, "has God healed him?" Time will tell but we are trusting the Lord.



"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is Your faithfulness. The Lord is my portion, says my soul, therefore I will hope in him."



Saturday, June 19, 2010

Happy Father's Day!!!


"Fatherhood is pretending
the present you love most
is soap-on-a-rope"
- Bill Cosby

































Sunday, June 13, 2010

Signs and symptoms and how God intervenes...continued

...as the days went on, it was obvious that David was becoming more and more fatigued, even after doing very little or even nothing at all! He was usually very busy and active, with tuning and piano repairs in the morning and teaching lessons in the afternoons and early evenings. He was also very busy with yardwork, house maintenance, church preparations and activities and daily living in general. Now, the simplest tasks would wear him out and he would accomplish less and less during a 24 hour span of time.

On Saturdays, our normal routine is to get up by 6:30 and spend the morning doing yard work and home maintenance/housework and then in the afternoon we would prepare for Sundays. For David, that meant going over the music for the worship service and preparing his Sunday School lesson. He could no longer do all this. He would now get up, then sit in his recliner all day- no energy at all to do anything! He admitted to feeling tired but didn't think that anything else was really the matter.

It is so important to know your spouse. To know their heart, their desires, their normal level of activity, their cognitive and physical abilities, their self. This is important in any marriage, but was especially crucial at this time because I was able to know without a doubt that something was very wrong with David. I finally talked him into going to the doctor... but he made an appointment for a regular physical a month later! He didn't even mention any symptoms he was having to the scheduling clerk.

On Mother's Day, Lydia and Hannah went out and bought a glucose monitoring system and tested David's blood sugar. They were really worried and it was obvious to both of our daughters that something was wrong with their Dad. They threw around ideas of what it could be; diabetes, heart disease, Pernicious anemia (which David's father had).... but brain tumor was never mentioned. After seeing that it wasn't just me that was worried, David agreed to let me make an appointment for him for that next week. We also agreed to tell our church family about the issues he was having so that they could join us in praying. I really believe now, that it was the prompting of the Holy Spirit that led me to move up that doctor's appointment rather than wait a month.

At this time, the only symptom that David was aware of having was fatigue. He was unaware of his mood changes, memory loss, or confusion and losing track of time. On Mother's Day, my granddaughter, Lauren (who has Spina Bifida and therefore always notices the way that other people get around) commented that "Granddaddy is walking funny." It was true, David was walking very slowly and deliberately, almost as if he was carefully thinking about his foot placement. I knew also that he had stumbled a few times in and around our home.
We went to the family physician that week after Mother's Day. They could find nothing wrong and made no suggestions, although they did order bloodwork. The doctor felt no sense of urgency although he did suggest a referral to a neurosurgeon once the labwork results were in. Again, I believe it is so important to know your spouse! To a doctor who sees someone only once a year, nothing may appear to be wrong. I knew there was something very wrong because I know my husband!

Several days went by and still we had heard nothing from the doctor's office concerning the lab results. I kept hounding the nurse at that practice. I believe this also was the prompting of the Holy Spirit. We know now that time was of the essence, and now that we can see the bigger picture we see that all this time saved (in moving up the appointment, pushing to get test results, etc) is why David is still alive today. The nurse was a little irritated with me but finally she called and let me know that she had the results and everything was normal. I later found out that the results had been in for several days, those are days that could have been critical! Praise God for His hand of protection on David!

Even though the test results were "normal" I knew we needed to see the neurosurgeon. Rather than wait on a referral, I called the neurosurgeon's office myself and made the appointment for May 20, just 11 days after Mother's Day. David went from walking "funny" on Mother's Day to having to be supported by me just to get into the neurosurgeon's office building. He was dragging his left foot and leg (due to his tumor being on the right side which affects function on the left side). We saw Dr. Michael Bowman at Raleigh Neurology. He is a wonderful doctor. He was very thorough in his exam and put David through many tests. He knew something was wrong and immediately ordered an MRI.

Again, I see the guidance of the Holy Spirit in all this. The MRI was going to be scheduled for Memorial weekend. David and I had planned to go away this particular weekend (the 21rst of May) for our anniversary. Instead, I pleaded with the MRI scheduling clerk to please give us a sooner date. God is so good! The clerk managed to fit David in that very next day. I didn't mind missing my weekend away as long as it meant finding out what was wrong with David.
By the next day, I had to get a wheelchair for David in order to get him into the MRI office. He was too weak to walk. In one day's time, his health and abilities had deteriorated so much! The MRI was at 3:00 that afternoon. I called Lydia, our oldest daughter, from the waiting room and told her how David was just not walking at all anymore. We also considered every possible medical issue that could be causing his symptoms. We even discussed Parkinsons syndrome. We still had not even considered a brain tumor. A very sweet, godly man in our church had just passed away from a brain tumor two weeks earlier. We watched his dear family go through a year of this, yet we never even thought it was going to happen to us. How could it hit two men in our very small church family?

Once the MRI was over, I took David home. I should mention here that I had not let him drive for some time, it was too scary for me to consider. So, we drove home knowing that with the MRI being scheduled so late in the day on a Friday, it was not likely that we would even hear from the neurosurgeon until the following Tuesday. Praise God again (and many times AGAIN)for His hand on David! Praise God for a radiologist that looked at that scan and knew what he was seeing! Praise God for a neurosurgeon who was available to get the results from that radiologist. Praise Him!

I had just made those famous hotdogs mentioned in a previous post (and which everyone at the hospital now knows about) and David was just getting ready to take his first bite... when the phone rang. It was the neurosurgeon.

...to be continued....

Tuesday, June 8, 2010

From a Son's Perspective

From Philip's blog (http://pdcarson.com/wordpress/)

"Friday night my world was shaken to its core and I was dropped to my knees in the span of about 2 minutes.

My mom called.
My dad -
-the man who was my idol,
-everything I wanted to be,
-had a brain tumor.

And not just any brain tumor, – no- because of the perfectionist he is, he had to go and get the mother of all brain tumors. No little pansy job would do, not for this man.

GBM level 4 (Basically its doctor talk for ticking time-bomb)

Needless to say we loaded the kids in the car and rushed to North Carolina. And what transpired in those few fateful days will I think forever leave their mark on me, my family and my ministry.

I saw joy. You read that right, I saw joy. It looks like a man on his deathbed one breath away from eternity and excited at the prospect. There was no fear in this man’s eyes. To be sure there is always some fear of the unknown but that joy overwhelmed us. It took hold of my mother, my sisters, me, it took hold of everyone who would talk to any of us. My Father’s joy became our joy and peace (the kind that passes all understanding to those who don’t know HIM) enveloped us.

All those things I ever wanted to say to my father (you know the sentimental mushy stuff men never say to men) I said, I said them all. But above all else the mark of the man that I want to strive for is the fuel that charges my dad. To live for eternity. Oh to be like him in that regard.

We returned home on Wednesday, after seeing my dad through a successful surgery on Monday and I trust he will soon be back to his old self, but as the doctor’s told us, the switch has been flipped and the clock is set at 1 ½ to 2 years.

God could yet provide other miracles, but if not, the mark that is left from those few days when the family of God gathered around one of their brothers is forever burned into our minds. Most go to a hospital in fear and trepidation. We went to potentially see someone off. It just so happens that this time his flight was delayed and he would remain a stranger in a strange land for a while longer.

As always
Not I, but Christ
For to me to live is Christ
To die gain

Sunday, June 6, 2010

Of signs and symptoms

(In Pam's words)

"I first began to notice that something was not quite right with David in early April. I had been back at work for a month after some medical/surgical complications of my own. I had not worked for over 3 months and David took such good care of me during that time. He did everything for me; cooking, cleaning, making sure I was comfortable, as well as working his normal occupation. After I went back to work, he began to be a little socially withdrawn. He was not as talkative as usual. After a little more time went by, he seemed to be depressed. Depression is so out of character for David! As most of you know, he is an outgoing, witty man. I asked him about it, but he said he was not depressed. David would still get up in the mornings and have his quiet time with the Lord but it seemed that the joy had gone out of his life. On occasion, after we would talk about things, he would rouse himself and be more "normal" for a day or so. This went on for about a month.

I told no one except the Lord. I didn't know at the time, but Lydia and Rich (our oldest daughter and her husband) had also noticed that something was "off" about David. Our son Philip, was a little confused after a phone conversation he had with David. Both Lydia and Philip thought something might be wrong but it was so subtle they weren't sure and didn't ask me. In early May, people at church started noticing and asking me about David. His teaching had lost its passion. He seemed to have difficulty in gathering his thoughts and often went over his time allowance. For those that know David and have heard him teach and preach, you know that he has always been "quick on his feet," quick to answer questions and refer someone to particular verses in the Bible and quick to come up with a story that relates to a situation. He was now lacking all of this.

Then his music began to suffer. David has played the piano for over 50 years. This is not something one forgets! He leads the worship at our church and practices with the worship team weekly. Practice soon became disorganized and David was unable to answer musical questions quickly. He would be playing a piece of music and hit the wrong notes. Practice would start late, because David seemed to no longer have a real concept of time. We were late to church several times, something that has never happened with us! Again, this was so out of character for David, this was not the man I knew so well after nearly 36 years of marriage. I was really very worried and prayed and cried out to the Lord constantly."

Psalm 18:6 In my distress, I called upon the Lord, and cried to my God for help; He heard my voice out of His temple, and my cry for help before Him came into His ears.

...to be continued