Mon 08/20/07
Confusion & fear during the night – as Susan visited the bathroom around 4am. I was alarmed not that she took a while, but that she came out weeping and scared, saying she forgot what to do. As I comforted her, I learned she did not forget how to do some basis tasks, but somehow thought she needed to pay for supplies before she used them. What a sweetheart – she didn't want to break any rules. I assured her that she can trust her own judgment and that her conscience will help her do the right thing.
We read in our devotional about Jacob wresting with God in Genesis 32:24. His experience transformed him as he became an overcomer during crisis, a time when God "pressed down on Jacob to press his old life from him...If God has called us to His highest and best, each of us will have a time of crisis, when all our resources will fail and when we face either ruin or something better than we have ever dreamed." We rely on God for His help.
Thu 08/23/07
Susan needs a lot of rest these days. Her periods of sleep typically are followed by waves of intense pain, evidently caused as increased blood flow to her head while lying down floods the nerve endings that are re-attaching near her incision. We're counting on this state passing soon. She's usually good for several periods of good energy during the day.
Wednesday was a landmark day for suture removal and a neuro-oncology meeting at UCLA followed by CT simulation in Long Beach. Getting staples & stitches removed means she can have an honest hair-washing on Friday, her first in 20 days. Today's appointments precede Susan's chemotherapy and radiation treatments that will begin next week, occurring simultaneously since her tumor is grade IV glioblastoma. The day's too-full schedule prevented usual rest and made Susan extremely weak by the end of the day – she could barely lift her feet to get out of the car.
Susan's six-week, Mon-Fri radiation treatments will happen at LB Memorial's radiation oncology unit under Dr Puthawala, who will coordinating treatments under UCLA's Dr Nghiemphu. Advanced radiation technology targets tumor tissue while avoiding vital areas, while side effects range from mild to severe skin burning and peeling, swelling (edema) and nerve damage.
Her 42-day chemotherapy is a commonly-prescribed drug called temodar (temozolomide) taken orally each day. It's effective at penetrating the blood-brain barrier, while common side effects include nausea, weakness and fatigue, dehydration, and low white blood cell counts, which increases the risk of infection.
We continue to wait on the Lord for healing and strength during our difficult journey. It feels like we're settling in for the long-haul, slogging it out in the "new normal" life with its uncertain outcome. Pain and fatigue are daily struggles for Susan along with the annoyance of memory deficits and mild to moderate confusion. Even so, we know we are being carried along in God's gracious hands with the support of he Holy Spirit and upon the prayers of countless caring people. I thank God for grace as my strength and devotion waver and I realize once again that I am really just a fragile sinner. Hope sustains us in that we know everything will be ok. Life is hard – but God is good.
Friday, August 24, 2007
Monday, August 20, 2007
Preparing for radiation, compassion at the DMV
Fri 08/17/07
We had an appointment with Susan's radiation oncologist, Dr Puthawala and his team at LB Memorial. She'll return next week to re-do the CT simulation that is needed for radiation therapy. The simulation is used to plan her treatments with Susan's brain scan, the oncologist's prescription, and the physicist's programming to fine-tune the equipment before radiation begins. Her plans from July need to be redone following her 2nd surgery.
Compassion at the DMV! We decided to get a temporary handicap placard since Susan qualifies due to loss of sight and needs to walk with assistance. At the DMV (you know, staffed by robotic agents weighed down with red tape), I left Susan in the car to enter the labyrinth, and discovered at length that she'd need to cancel her driver's license in order to receive a placard for visual impairment. That makes sense – but also involves a weighty decision. I went out to discuss it with her and allow her to decide for herself. She knows she can't drive right now and can re-apply when her sight returns, so she agreed to cancel it. When I brought her inside to sign forms, a clerk showed true compassion in expressing sorrow for our situation – he apologized repeatedly. Then, as we waited in a long line for Susan's state ID card photo, he left his station (and his customers), and led us to the front of the line. The people we bumped were gracious and understanding also. Thanks to Russell at the Long Beach DMV – a caring human being who softened a bureaucracy.
Sun 08/19/07
Susan has had recurring pain in her scalp as nerve endings re-attach near her incision. Vicodin helps.
We attended some family events involving both sides of our family, a Romberg wedding reception on Saturday and a Joeckel wedding on Sunday. We enjoyed the social atmosphere, love & support.
We had an appointment with Susan's radiation oncologist, Dr Puthawala and his team at LB Memorial. She'll return next week to re-do the CT simulation that is needed for radiation therapy. The simulation is used to plan her treatments with Susan's brain scan, the oncologist's prescription, and the physicist's programming to fine-tune the equipment before radiation begins. Her plans from July need to be redone following her 2nd surgery.
Compassion at the DMV! We decided to get a temporary handicap placard since Susan qualifies due to loss of sight and needs to walk with assistance. At the DMV (you know, staffed by robotic agents weighed down with red tape), I left Susan in the car to enter the labyrinth, and discovered at length that she'd need to cancel her driver's license in order to receive a placard for visual impairment. That makes sense – but also involves a weighty decision. I went out to discuss it with her and allow her to decide for herself. She knows she can't drive right now and can re-apply when her sight returns, so she agreed to cancel it. When I brought her inside to sign forms, a clerk showed true compassion in expressing sorrow for our situation – he apologized repeatedly. Then, as we waited in a long line for Susan's state ID card photo, he left his station (and his customers), and led us to the front of the line. The people we bumped were gracious and understanding also. Thanks to Russell at the Long Beach DMV – a caring human being who softened a bureaucracy.
Sun 08/19/07
Susan has had recurring pain in her scalp as nerve endings re-attach near her incision. Vicodin helps.
We attended some family events involving both sides of our family, a Romberg wedding reception on Saturday and a Joeckel wedding on Sunday. We enjoyed the social atmosphere, love & support.
Friday, August 17, 2007
Hospitalization & discharge at UCLA
Tue 08/14/07
A recent entry in Susan's journal: I'm encouraged as I look forward to what God has to show me about his love and faithfulness!
Wed 08/15/07
Susan said, "With all the prayers by all these people I should become someone like Mrs. Billy Graham by now. But we know God does things differently than we think. Look at what He did with Jesus, and how He had to die. He was not just humiliated, He was rejected."
Susan's journal: God continues to teach me about my commitment and responsibility, first to Him, then to others. I pray for grace to follow His commands and divinely love His people.
Thu 08/16/07
Susan has had several other tests during this hospitalization focusing on a possible 2nd stroke and the source of pain: an MRA (magnetic resonance angiography) of brain and neck, an ECG (electrocardiogram) with cardiac ultrasound, and a CT (computed tomography) angioplasty. These were used to analyze her circulatory system around the heart and brain without being invasive – the results showed normal arteries and blood flow with no plaque or blockage. Thanks to God.
Regarding stroke, there is a small area of restricted blood flow near the mid-brain that was not evident on a previous brain MRI, "downstream" from the stroke area in her occipital lobe from 07/03/07. It could be the result of a new event, or may have been there since July. It's small enough to have been missed on previous MRIs and small enough not to pose a problem. It was not likely the cause of Susan's pain this week and obviously was an important issue to understand and rule out. She's on low-dose aspirin for stroke prevention.
Regarding pain, doctors believe Susan was tapered too quickly from decadron, a powerful steroid that counters brain swelling. Most patients are on it several weeks prior to surgery and benefit from a 3-day taper. Susan had been on it for about 6 weeks prior to her 2nd surgery; so the normal taper schedule resulted in a swelling rebound with intense pain. She's back on decadron with a 4-week taper and doing better.
Regarding tumor, here's the really good news: Dr Liau took out about 95% of it. I've learned to be cautious with these estimates; but she got almost all of it on the left side, leaving only the small inoperable portion that had crossed the midline to the right. The goal is accomplished – less tumor means better outcome of radiation & chemotherapy.
Susan was discharged on Thursday and is home again resting comfortably with medications for anti-inflammation, anti-seizure and pain. She's in good spirits, and is getting pretty good again at deadpan sarcasm. Before we left the hospital, she remarked about "The Price Is Right" on TV: "Now there's a real low point in a person's life when they don't spin the wheel around completely. Humiliated on national TV. And I think I've got problems."
Here are some of Dr Liau's note from surgery on 08/06.
A recent entry in Susan's journal: I'm encouraged as I look forward to what God has to show me about his love and faithfulness!
Wed 08/15/07
Susan said, "With all the prayers by all these people I should become someone like Mrs. Billy Graham by now. But we know God does things differently than we think. Look at what He did with Jesus, and how He had to die. He was not just humiliated, He was rejected."
Susan's journal: God continues to teach me about my commitment and responsibility, first to Him, then to others. I pray for grace to follow His commands and divinely love His people.
Thu 08/16/07
Susan has had several other tests during this hospitalization focusing on a possible 2nd stroke and the source of pain: an MRA (magnetic resonance angiography) of brain and neck, an ECG (electrocardiogram) with cardiac ultrasound, and a CT (computed tomography) angioplasty. These were used to analyze her circulatory system around the heart and brain without being invasive – the results showed normal arteries and blood flow with no plaque or blockage. Thanks to God.
Regarding stroke, there is a small area of restricted blood flow near the mid-brain that was not evident on a previous brain MRI, "downstream" from the stroke area in her occipital lobe from 07/03/07. It could be the result of a new event, or may have been there since July. It's small enough to have been missed on previous MRIs and small enough not to pose a problem. It was not likely the cause of Susan's pain this week and obviously was an important issue to understand and rule out. She's on low-dose aspirin for stroke prevention.
Regarding pain, doctors believe Susan was tapered too quickly from decadron, a powerful steroid that counters brain swelling. Most patients are on it several weeks prior to surgery and benefit from a 3-day taper. Susan had been on it for about 6 weeks prior to her 2nd surgery; so the normal taper schedule resulted in a swelling rebound with intense pain. She's back on decadron with a 4-week taper and doing better.
Regarding tumor, here's the really good news: Dr Liau took out about 95% of it. I've learned to be cautious with these estimates; but she got almost all of it on the left side, leaving only the small inoperable portion that had crossed the midline to the right. The goal is accomplished – less tumor means better outcome of radiation & chemotherapy.
Susan was discharged on Thursday and is home again resting comfortably with medications for anti-inflammation, anti-seizure and pain. She's in good spirits, and is getting pretty good again at deadpan sarcasm. Before we left the hospital, she remarked about "The Price Is Right" on TV: "Now there's a real low point in a person's life when they don't spin the wheel around completely. Humiliated on national TV. And I think I've got problems."
Here are some of Dr Liau's note from surgery on 08/06.
- Pre-Op Diagnosis: Left frontal brain tumor; Post-Op Diagnosis: Left frontal glioblastoma multiforme
- Operation: Left frontal craniotomy with resection of primary brain
- Complexity: This was the case of high complexity given that the patient had already had previous surgery for her left frontal brain tumor. There was significant amount of scar tissue from the patient's previous surgeries as well as subfalcine herniation of the tumor across the midline. The tumor itself was noted to be very vascular; and this combined with its location just millimeters away from eloquent language cortex made this a very challenging case of high complexity. This case took an extra 2 hours.
- The BrainLAB intra-operative navigational instrument was registered using anatomical and surface landmarks...The brain was noted to be quite swollen due to compression from underlying brain tumor...gross tumor was encountered which was noted to be necrotic, grayish purple, and very vascular...tumor tissue within the left frontal lobe was clearly abnormal by virtue of its color, consistency, and texture were carefully resected...The intra-operative MRI scan showed a large left frontal resection cavity, with gross total removal of the enhancing tumor in the left frontal lobe. There was a small amount of residual tumor crossing the midline to the right, but it was felt that this area of tumor was too deep to be resected safely. There was no evidence of any bleeding, infarct, or any other intra-operative complications.
We celebrate God and give thanks that so much tumor was removed without complications or deficit to Susan, a direct answer to prayer. The fact that tumor was so easy to identify from its abnormal appearance is a marvel. We truly are grateful to Dr Liau for her excellence and care, and we thank God that he made the advantages of UCLA's technology available to Susan.
Tuesday, August 14, 2007
Complications
Mon 08/13/07
Susan's pain increased somewhat each day on Sat & Sun along with greater fatigue. Her pain eased with Vicodin; and she had more frequent, longer naps than before.
She awoke at 2:30a with severe pain, crying, asking why it was happening. I gave her Vicodin and called UCLA Med Center. I thought the fact that we had weaned her off an anti-inflammatory called Decadron might have resulted in more brain edema (swelling). While that's not clear, the resident neurosurgeon on duty suggested she come in for another MRI.
When a 2nd Vicodin didn't relieve Susan's pain, we left for UCLA at 4:00a. They gave her morphine in the ER which took care of pain and allowed her to rest. She had a CT scan and an MRI during the morning and was admitted to the 7th floor neuroscience unit about 5:00p.
Thankfully, the scans showed no bleeding or severe swelling. However, they did reveal Susan had a sub-acute or mild stroke in the middle of her brain. Although not a full stroke with the classic symptoms, blood supply was cut off to some degree. She had several neurology exams as the team wants to rule out a cause other than cancer or swelling. She is slightly more confused about her general environment and what's going on.
Susan remains under evaluation for the causes of pain and stroke with treatment to follow.
While we continue to navigate the difficulties of Susan's situation, I am reminded that lamentation is the most powerful form of worship. Here is what the prophet Habbukuk has to say:
Lord, have mercy on us.
Susan's pain increased somewhat each day on Sat & Sun along with greater fatigue. Her pain eased with Vicodin; and she had more frequent, longer naps than before.
She awoke at 2:30a with severe pain, crying, asking why it was happening. I gave her Vicodin and called UCLA Med Center. I thought the fact that we had weaned her off an anti-inflammatory called Decadron might have resulted in more brain edema (swelling). While that's not clear, the resident neurosurgeon on duty suggested she come in for another MRI.
When a 2nd Vicodin didn't relieve Susan's pain, we left for UCLA at 4:00a. They gave her morphine in the ER which took care of pain and allowed her to rest. She had a CT scan and an MRI during the morning and was admitted to the 7th floor neuroscience unit about 5:00p.
Thankfully, the scans showed no bleeding or severe swelling. However, they did reveal Susan had a sub-acute or mild stroke in the middle of her brain. Although not a full stroke with the classic symptoms, blood supply was cut off to some degree. She had several neurology exams as the team wants to rule out a cause other than cancer or swelling. She is slightly more confused about her general environment and what's going on.
Susan remains under evaluation for the causes of pain and stroke with treatment to follow.
While we continue to navigate the difficulties of Susan's situation, I am reminded that lamentation is the most powerful form of worship. Here is what the prophet Habbukuk has to say:
Though the fig tree does not bud and there are no grapes on
the vines, though the olive crop fails and the fields produce no food, though
there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in
the LORD, I will be joyful in God my Savior. The Sovereign LORD is my strength;
he makes my feet like the feet of a deer, he enables me to go on the heights.
(Hab 3:17-19)
Lord, have mercy on us.
Monday, August 13, 2007
Resting
Fri 08/10/07
Susan is resting comfortably at home and sleeping a lot. I'm having the kids remember that even though she's at home, she's still a brain surgery patient who needs rest, needs help walking, and needs 24-hour supervision. They're great helpers and are doing their best to keep the noise down and the house clean.
Susan's dizziness seems to be more pronounced than last week. She's had vertigo since her first surgery – everything spins from left to right and seems tilted. It feels to her like a normal floor surface is inclined, so it's hard for her to keep her balance. We pray for relief.
It's time to admit I've been grumbling to myself this week in disappointment that God did not simply remove Susan's tumor in a miraculous act. I know He's able to heal and I fully expected Him to do so, which is the posture we're supposed to have. We're praying – everyone's praying – fervently. What more can we do? Nothing.
I'll accept that it's normal to feel let down and remember these circumstances are not centered on my feelings. Overall, Susan is having a remarkable post-op recovery. I am thankful for skilled medical specialists, for a smooth surgical procedure, and for Susan's improving condition. I'm really thankful she's home.
I happened to see our friends Jerry & Sheryl Vos at the grocery store last night, where we pondered God's sovereignty and the mystery of His will. We agreed that it's good He's in charge because He really knows what He's doing. If we could somehow make Him answer every prayer of ours just the way WE wanted Him to, we would mess up His perfect plans – plans that often include suffering and that are for our ultimate good. Now is the time to swallow hard and continue trusting our loving Father in heaven. As we held hands in Pavilions and Jerry prayed, I knew the love God provides for us in the Body of Christ. That's enough for now.
Sun 08/12/07
Psalm 3 has brought me comfort. Here is The Message version.
Susan is resting comfortably at home and sleeping a lot. I'm having the kids remember that even though she's at home, she's still a brain surgery patient who needs rest, needs help walking, and needs 24-hour supervision. They're great helpers and are doing their best to keep the noise down and the house clean.
Susan's dizziness seems to be more pronounced than last week. She's had vertigo since her first surgery – everything spins from left to right and seems tilted. It feels to her like a normal floor surface is inclined, so it's hard for her to keep her balance. We pray for relief.
It's time to admit I've been grumbling to myself this week in disappointment that God did not simply remove Susan's tumor in a miraculous act. I know He's able to heal and I fully expected Him to do so, which is the posture we're supposed to have. We're praying – everyone's praying – fervently. What more can we do? Nothing.
I'll accept that it's normal to feel let down and remember these circumstances are not centered on my feelings. Overall, Susan is having a remarkable post-op recovery. I am thankful for skilled medical specialists, for a smooth surgical procedure, and for Susan's improving condition. I'm really thankful she's home.
I happened to see our friends Jerry & Sheryl Vos at the grocery store last night, where we pondered God's sovereignty and the mystery of His will. We agreed that it's good He's in charge because He really knows what He's doing. If we could somehow make Him answer every prayer of ours just the way WE wanted Him to, we would mess up His perfect plans – plans that often include suffering and that are for our ultimate good. Now is the time to swallow hard and continue trusting our loving Father in heaven. As we held hands in Pavilions and Jerry prayed, I knew the love God provides for us in the Body of Christ. That's enough for now.
Sun 08/12/07
Psalm 3 has brought me comfort. Here is The Message version.
God! Look! Enemies past counting! Enemies sprouting like mushrooms, mobs of them all around me, roaring their mockery: "Hah! No help for him from God!"
But you, God, shield me on all sides; You ground my feet, you lift my head high; with all my might I shout up to God, His answers thunder from the holy mountain.
I stretch myself out. I sleep. Then I'm up again—rested, tall and steady, fearless before the enemy mobs coming at me from all sides.
Up, God! My God, help me! Slap their faces, first this cheek, then the other, Your fist hard in their teeth!
Real help comes from God. Your blessing clothes your people!
Friday, August 10, 2007
Improvement, great progress, and discharge
Tue 08/07/07
After improving conditions and vital signs, Susan was moved from ICU to a regular room on the neurological ward less than 20 hours after surgery. It really helps that she didn't need an intracranial catheter this time to monitor pressure on the brain and drain fluids. In fact, she's almost disconnected entirely but for the standard IV and etc.
Susan has a large, helmet-like bandage on her head, unlike the taped-over incision in July, and has had remarkably little swelling or bruising on her face. Her spirits are good – we're grateful for smooth progress.
Wed 08/08/07
My visits are more limited and less vigil-like than last month due to the UCLA drive time. I have less interaction with medical staff and more distance from the flow of Susan's daily treatment. Still, all goes well. She's comfortable and remarkably upbeat considering it's post-op day 2 and last time she was still in ICU and was pretty well out of it.
She'll have physical and occupational therapy exams early tomorrow with the possibility of being discharged (already!). The medical staff knows she'll have better rest and be more comfortable at home, and doesn't really need hospitalization as long as her condition is stable.
Thu 08/09/07
It's amazing – Susan was released today on the 3rd day after surgery! The staff gave me detailed instructions for her care at home and what trouble signs to look for along with prescriptions for meds and outpatient & home therapy. She has a cane to help her stay balanced while she walks. It's good to have her home so soon.
After improving conditions and vital signs, Susan was moved from ICU to a regular room on the neurological ward less than 20 hours after surgery. It really helps that she didn't need an intracranial catheter this time to monitor pressure on the brain and drain fluids. In fact, she's almost disconnected entirely but for the standard IV and etc.
Susan has a large, helmet-like bandage on her head, unlike the taped-over incision in July, and has had remarkably little swelling or bruising on her face. Her spirits are good – we're grateful for smooth progress.
Wed 08/08/07
My visits are more limited and less vigil-like than last month due to the UCLA drive time. I have less interaction with medical staff and more distance from the flow of Susan's daily treatment. Still, all goes well. She's comfortable and remarkably upbeat considering it's post-op day 2 and last time she was still in ICU and was pretty well out of it.
She'll have physical and occupational therapy exams early tomorrow with the possibility of being discharged (already!). The medical staff knows she'll have better rest and be more comfortable at home, and doesn't really need hospitalization as long as her condition is stable.
Thu 08/09/07
It's amazing – Susan was released today on the 3rd day after surgery! The staff gave me detailed instructions for her care at home and what trouble signs to look for along with prescriptions for meds and outpatient & home therapy. She has a cane to help her stay balanced while she walks. It's good to have her home so soon.
Tuesday, August 7, 2007
A second craniotomy
Mon 08/06/07
We awoke at 3:00a, were on the freeway by 4:20a, and made it to UCLA in 25 minutes instead of the usual 60-90 minutes. I realize how close Bellflower is to Westwood except for traffic. Arrived at Admissions Dept on time at 5:00a and learned about our $3500 co-payment. They'll bill me.
Went to pre-op area at 5:30a and Susan's anesthesiologist and some of her nurses, including Laurie, our liaison for surgery updates. Susan had an initial exam, got IVs started, and went into surgery on schedule at 7:30a.
The family gathered in the cozy chapel at UCLA Medical Center after Susan's surgery to give thanks to God and ask for His continued hand of healing upon Susan.
We awoke at 3:00a, were on the freeway by 4:20a, and made it to UCLA in 25 minutes instead of the usual 60-90 minutes. I realize how close Bellflower is to Westwood except for traffic. Arrived at Admissions Dept on time at 5:00a and learned about our $3500 co-payment. They'll bill me.
Went to pre-op area at 5:30a and Susan's anesthesiologist and some of her nurses, including Laurie, our liaison for surgery updates. Susan had an initial exam, got IVs started, and went into surgery on schedule at 7:30a.
- 10:30a update from Laurie – all is going ok in O.R.
- 1:30p update – first phase is done and went well. They're doing an inter-operative MRI scan to check tumor location before 2nd phase. About 1-2 hours remain.
- 3:10p Dr Liau spoke to family while her assistants finished closing. (Susan's parents David & Helen, Aunt Linda, Randy & Dorothy with David & Nathan, and friend Vicki Gelberg were there with the kids and I.)
- The craniotomy revealed there had been quite a bit of brain swelling due to the significant tumor size. The tumor emerged and kind of lifted up when the skull was opened, which made the resection easier. Susan did not need to be awakened during surgery. Dr Liau removed about 8 grams of tumor; all samples tested were composed of glioblastoma cells. There are some tendrils remaining, including a portion across the mid-line to the right side. She said to plan on Susan having memory & cognitive setbacks due to surgery that should improve during recovery.
- The surgery was successful in significantly de-bulking Susan's brain tumor and in her coming through without complications. Now radiation and chemotherapy have a better chance of success since there are fewer tumor cells to target. Also, there is a possibility that Susan may be eligible for a clinical trial cancer vaccine.
- Great joy as the family visited Susan in ICU at 5:15p. She was waking up well and was still groggy, but has carried over memory from before surgery. Instead of asking all the where-what-who questions like before, she knows where she is and what's happened. She didn't talk much, but she said "I'm pretty clued-in to what's going on." All thanks and praise to God for a great day.
- My 9:00-10:00p ICU visit went well. Susan was more alert than earlier and aware of her surroundings. She was in quite a bit of pain and really wanted to sleep, so her nurse raised her dose of morphine. She remembered that Adam has "sore eyes" and needs to see the doctor. Actually, he has a muscle spasm in his neck & shoulder, but she had the general idea – a month ago, Susan couldn't remember our kids at all.
The family gathered in the cozy chapel at UCLA Medical Center after Susan's surgery to give thanks to God and ask for His continued hand of healing upon Susan.
Monday, August 6, 2007
Planning another brain surgery
Mon 07/30/07
Susan's Dad and brother Randy & wife Dorothy joined Susan & me to meet with Dr Ceverha, our trusted and experienced neurosurgeon at LB Memorial. We discussed our neuro-oncology visit last week at UCLA; and he reiterated his long-held position that Susan needs another craniotomy to de-bulk the tumor in order for radiation and chemotherapy to be more effective. He gave us some help in knowing what questions to ask when we visit the neurosugeon at UCLA tomorrow. Barry Ceverha is a compassionate and caring professional who truly has his patients' best interests at heart. He wants to see Susan well by any means – he's a good man. We trust him.
Tue 07/31/07
Susan went to UCLA today along with her parents to consult with Dr Linda Liau. This was another informative and beneficial meeting that allowed us to establish our next step. She agrees with Dr Ceverha that Susan's tumor takes up too much space in her brain and needs surgical resection. We were impressed with her compassion and care and developed a sense of comfort and trust during our visit.
We are strongly leaning to the UCLA option due to their "deep bench" in specialization and technology. It adds up to the highest levels of competence combined with patient-specific information during brain surgery. For example, combining data from the functional MRI with a structural MRI will result in an anatomical map of Susan's brain that identifies (and protects) vital areas. An inter-operative MRI will allow the team to do MRI during surgery to clarify any sensitive regions. Also, Dr Liau can actually wake Susan up during the procedure to interact and get more understanding of real-time brain function. (That one's pretty wild.) Access to these technologies and methods enables more intricate brain surgery and is a clear advantage. We have a tentative surgery date for Mon 8/6 at UCLA.
I inquired about UCLA brain surgery families getting a discount on football tickets in case Sue's dad wants to switch allegiance from USC. You never know.
Wed 08/01/07
After consulting with physicians and family, Susan and I decided to proceed with a second surgery at UCLA on 8/6.
Thu 08/02/07
This was a big day of pre-op appointments at UCLA. We left the house at 7:30a and returned at 5:30p. I got Susan a wheelchair and we rolled to: anesthesia dept, blood type/screening exam, admissions & finance dept, neurosurgery dept re clinical trial, radiology dept for a structural MRI, and an internist's office for health screening exam. The structural MRI will be digitally fused with the functional MRI from last Friday to complete Susan's brain mapping.
We gathered at Emmanuel for worship and prayer at Oasis. One theme that emerged was waiting on the Lord with the awareness that He is waiting on us. There is a sense of expectation. Later, Rachel Shivers shared with me that the Hebrew word for "wait" is the same as the word for "hope." Truly, waiting means "waiting with expectation." I was reminded that I need to continue proclaiming words of life in spite of the circumstances. We concluded the night with intercessory prayer for healing in the body of Christ and for pushing back the realm darkness. People were invited to continue our prayer vigil through Monday.
Fri 08/03/07
We were back at UCLA for language evaluation with Dr Susan Bookheimer, a nueropsychologist who works with neurosurgeon Dr Liau. We had a 30 minute consultation followed by a two-hour exam that established a cognitive baseline for comparison after surgery.
Dr Bookheimer confirmed Susan would most likely not need to be awakened during surgery since there is a 1cm margin between the tumor and Broca's area (for speech). If Susan does need to be awake, she will assist.
We were advised about the possibility that the area for speech impulse could be severed during surgery, resulting in a total loss of speech for 4-6 weeks until that function relocates to another area of the brain. Brains are amazing.
Sun 08/05/07
We enjoyed an uplifting day of worship, rest and visits. Pastor Bill White incorporated a video interview with Susan and I from last week in his sermon on Colossians 3:15, "Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful." We shared how we have peace and our reasons for thankfulness during this season – people obviously were encouraged. We thank God and are amazed that He would allow us to be used in such a way.
Family and neighbors visited us Sunday evening for conversation, food and prayer. Our friends Pete & Angela Corbett dropped by with daughter Ryann and Angela's mom to decorate our driveway with sidewalk chalk in "the biggest greeting card we could find." It's a spectacular display of colorful images, scriptures, and love notes. Our neighbors, the Gilhams, joined in also. We're loved.
Susan's Dad and brother Randy & wife Dorothy joined Susan & me to meet with Dr Ceverha, our trusted and experienced neurosurgeon at LB Memorial. We discussed our neuro-oncology visit last week at UCLA; and he reiterated his long-held position that Susan needs another craniotomy to de-bulk the tumor in order for radiation and chemotherapy to be more effective. He gave us some help in knowing what questions to ask when we visit the neurosugeon at UCLA tomorrow. Barry Ceverha is a compassionate and caring professional who truly has his patients' best interests at heart. He wants to see Susan well by any means – he's a good man. We trust him.
Tue 07/31/07
Susan went to UCLA today along with her parents to consult with Dr Linda Liau. This was another informative and beneficial meeting that allowed us to establish our next step. She agrees with Dr Ceverha that Susan's tumor takes up too much space in her brain and needs surgical resection. We were impressed with her compassion and care and developed a sense of comfort and trust during our visit.
We are strongly leaning to the UCLA option due to their "deep bench" in specialization and technology. It adds up to the highest levels of competence combined with patient-specific information during brain surgery. For example, combining data from the functional MRI with a structural MRI will result in an anatomical map of Susan's brain that identifies (and protects) vital areas. An inter-operative MRI will allow the team to do MRI during surgery to clarify any sensitive regions. Also, Dr Liau can actually wake Susan up during the procedure to interact and get more understanding of real-time brain function. (That one's pretty wild.) Access to these technologies and methods enables more intricate brain surgery and is a clear advantage. We have a tentative surgery date for Mon 8/6 at UCLA.
I inquired about UCLA brain surgery families getting a discount on football tickets in case Sue's dad wants to switch allegiance from USC. You never know.
Wed 08/01/07
After consulting with physicians and family, Susan and I decided to proceed with a second surgery at UCLA on 8/6.
Thu 08/02/07
This was a big day of pre-op appointments at UCLA. We left the house at 7:30a and returned at 5:30p. I got Susan a wheelchair and we rolled to: anesthesia dept, blood type/screening exam, admissions & finance dept, neurosurgery dept re clinical trial, radiology dept for a structural MRI, and an internist's office for health screening exam. The structural MRI will be digitally fused with the functional MRI from last Friday to complete Susan's brain mapping.
We gathered at Emmanuel for worship and prayer at Oasis. One theme that emerged was waiting on the Lord with the awareness that He is waiting on us. There is a sense of expectation. Later, Rachel Shivers shared with me that the Hebrew word for "wait" is the same as the word for "hope." Truly, waiting means "waiting with expectation." I was reminded that I need to continue proclaiming words of life in spite of the circumstances. We concluded the night with intercessory prayer for healing in the body of Christ and for pushing back the realm darkness. People were invited to continue our prayer vigil through Monday.
Fri 08/03/07
We were back at UCLA for language evaluation with Dr Susan Bookheimer, a nueropsychologist who works with neurosurgeon Dr Liau. We had a 30 minute consultation followed by a two-hour exam that established a cognitive baseline for comparison after surgery.
Dr Bookheimer confirmed Susan would most likely not need to be awakened during surgery since there is a 1cm margin between the tumor and Broca's area (for speech). If Susan does need to be awake, she will assist.
We were advised about the possibility that the area for speech impulse could be severed during surgery, resulting in a total loss of speech for 4-6 weeks until that function relocates to another area of the brain. Brains are amazing.
Sun 08/05/07
We enjoyed an uplifting day of worship, rest and visits. Pastor Bill White incorporated a video interview with Susan and I from last week in his sermon on Colossians 3:15, "Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful." We shared how we have peace and our reasons for thankfulness during this season – people obviously were encouraged. We thank God and are amazed that He would allow us to be used in such a way.
Family and neighbors visited us Sunday evening for conversation, food and prayer. Our friends Pete & Angela Corbett dropped by with daughter Ryann and Angela's mom to decorate our driveway with sidewalk chalk in "the biggest greeting card we could find." It's a spectacular display of colorful images, scriptures, and love notes. Our neighbors, the Gilhams, joined in also. We're loved.
Subscribe to:
Posts (Atom)