Our first appointment on Thursday was an audiology exam at 9:30 am. It was a fairly typical hearing test used as a baseline. The chemo treatment was scheduled to begin at 3:00 pm and we finally found out Kevin was accepted into the study group after checking in for that appointment. First more baseline tests – physical exam, EKG, blood draw and a cognitive/neurological exam. They put in two IVs – one for blood draws and one for the chemo. With the chemo IV they gave Kev some Zofran (anti-nausea med) and then finally started the ANG1005 at about 4:30. The plan was to administer the 500 ml mixture over 1 hr period. Because this drug has never before been tested in humans they keep very close watch on the study group participants. Eight blood draws altogether will be taken before we leave on Th –at the start of the infusion then every 30 minutes for the first 1 ½ hrs and then once every hour for the next 4 hours. The blood draws are for pharmacokinetic (PK) testing which measures the amount of the drug in his body at different time points. Vitals are taken every 15 minutes during the infusion, 30 minutes after the finish and then once every hour for the next 4 hours. A total of 3 EKGs will be run throughout the event.
After about 15-20 minutes one of the Researchers comes in and asks if we had started and I tell him “yes, it’s that milky colored one.” He seemed a bit confused and mumbled back, “milky?...yes…milky…I’ll be right back”. Next comes up the pharmacy Drs who introduce themselves, exam the drug, sort of whisper amongst themselves – “it was clear when we mixed it…must have turned cloudy after we shipped it up here…we’ll be right back.” They all return with the floor nurse and explain that they spoke with the pharmaceutical company, Angiochem, and were told the drug should be fine and Kev should be fine, but asked for it in writing and were going to stop the IV until the fax arrived. Apparently Angiochem changed their minds, because after about half an hour we were told they were not going to restart the infusion. Kev had received about 2/3 of the expected dose and again we were assured he should be fine, but an investigation would be conducted. We stayed the required 4 hours and completed the remaining the blood, EKG & vitals. The drug made Kevin very sleepy and he pretty much dosed off as soon as they started it, but other than that there didn’t seem to be any other side effects. Kev did the give the Researcher a bit of a scare when in mid-sentence he nodded off – one of his classics – head tilts back, eyes lids at half mast, eyes roll back in their sockets and mouth drops open. After seeing his concern, I explained he was just sleeping :-0
On Friday we went back for more blood and a physical exam. They informed us the preliminary investigation determined that the cloudy effects of the drug are a result of the concentration. They have just recently started this highest level of concentration and have decided from now on they will increase the dilution to 1 liter and change infusion to 2 hours. Kev was the second participant to receive the highest concentration and although the cloudy effects were not recognized on the first participate, they believe it was present. We were again assured Kev “should be fine” :-)
We are still chasing a very resilient urinary tract infection (UTI) and were given yet another antibiotic to try. Apparently the bacteria remaining were resistant to the previous two antibiotics he was taking. The Researchers are very careful about infections and told us any fever above 100F means a trip to the ER. Next appointment is Wed for more routine tests.
Sunday, June 29, 2008
Thursday, June 26, 2008
Lab Rats
This week has been a whirlwind of events…
Sunday afternoon Kev starts worrying about his left arm which had apparently been getting weaker and loosing sensation. So he calls his Dr and they tell him to come into the ER for an assessment. Kev was obviously concerned that his arm was about to go the same way as his legs. The ER Dr calls in the neurosurgeon on-site (5th year intern). They review the charts/scans and wanting more experience call in the on-call neurosurgeon. They all decided that there really is nothing they can do surgically (since either the brain or spinal tumors could be causing the problem) and paralysis of the arms is likely inevitable, but reserve final decision for Kev’s neurosurgeon himself whom they expected to be in the next day, Monday. Kevin was admitted for observations and we waited. On Monday we found out his neurosurgeon was going to be in surgery all day so he wouldn’t be able to speak with us until Tues – more waiting. But on Tuesday we had a good discussion. Kev and his neurosurgeon get along great. Kev always has a bunch of questions / theories on how the brain works and his Dr really enjoys these conversations. He spent about an hour with us drawing up a bunch of pictures/diagrams and explaining each brain tumor site in addition to the T1 tumor – but the short story is he's convinced that the T1 tumor was the cause of the arm problems and he also was convinced he could remove a significant amount of it and told us he could fit us in within the next few days if desired. So we have another option, but before we make any decisions we want to speak with Targeted Therapy which is scheduled for Wed.
Kev remained “admitted” to make it easier for him since he needed EKG and blood work run on Wed morning and the Target Therapy appt in the afternoon. But just as I was ready to wheel him down for the blood work we were informed that Target Therapy could not see him if he was still “admitted” even though his PA had made some “agreements” the day before– after a few frantic phone calls Kev was discharged in record time – 15 minutes, a process that typically takes hours – and we were on our way. The meeting with Targeted Therapy went great – they presented us with the option of participating in a Phase 1 trail with a new drug ANG1005. It is a mitotic inhibitor combined with amino acid peptide that crosses the blood-brain barrier. It’s considered a “smart-chemo” since it targets the cancer cells specifically without destroying everything else in its path. It has shown promise in lab rats and Kev will be part of a small group humans to first receive the drug. The protocol is pretty simple – IV infusion of 500 mg of ANG1005 every 3 weeks and staging scans every 6 weeks. There is one catch, even though the MDA folks accepted him, the pharmaceutical company, Angiochem, gets final approval and apparently there is some concern regarding his paralysis. A treatment is scheduled for thursday, but is contingent on final approval and we won't know if we have that approval until after we will have already left the house.
Kev decided he wants to try the trial and if it doesn’t work, i.e. tumors grow & his arm further degrades he’ll quit and switch paths.
Thursday proves to be an interesting day….
Sunday afternoon Kev starts worrying about his left arm which had apparently been getting weaker and loosing sensation. So he calls his Dr and they tell him to come into the ER for an assessment. Kev was obviously concerned that his arm was about to go the same way as his legs. The ER Dr calls in the neurosurgeon on-site (5th year intern). They review the charts/scans and wanting more experience call in the on-call neurosurgeon. They all decided that there really is nothing they can do surgically (since either the brain or spinal tumors could be causing the problem) and paralysis of the arms is likely inevitable, but reserve final decision for Kev’s neurosurgeon himself whom they expected to be in the next day, Monday. Kevin was admitted for observations and we waited. On Monday we found out his neurosurgeon was going to be in surgery all day so he wouldn’t be able to speak with us until Tues – more waiting. But on Tuesday we had a good discussion. Kev and his neurosurgeon get along great. Kev always has a bunch of questions / theories on how the brain works and his Dr really enjoys these conversations. He spent about an hour with us drawing up a bunch of pictures/diagrams and explaining each brain tumor site in addition to the T1 tumor – but the short story is he's convinced that the T1 tumor was the cause of the arm problems and he also was convinced he could remove a significant amount of it and told us he could fit us in within the next few days if desired. So we have another option, but before we make any decisions we want to speak with Targeted Therapy which is scheduled for Wed.
Kev remained “admitted” to make it easier for him since he needed EKG and blood work run on Wed morning and the Target Therapy appt in the afternoon. But just as I was ready to wheel him down for the blood work we were informed that Target Therapy could not see him if he was still “admitted” even though his PA had made some “agreements” the day before– after a few frantic phone calls Kev was discharged in record time – 15 minutes, a process that typically takes hours – and we were on our way. The meeting with Targeted Therapy went great – they presented us with the option of participating in a Phase 1 trail with a new drug ANG1005. It is a mitotic inhibitor combined with amino acid peptide that crosses the blood-brain barrier. It’s considered a “smart-chemo” since it targets the cancer cells specifically without destroying everything else in its path. It has shown promise in lab rats and Kev will be part of a small group humans to first receive the drug. The protocol is pretty simple – IV infusion of 500 mg of ANG1005 every 3 weeks and staging scans every 6 weeks. There is one catch, even though the MDA folks accepted him, the pharmaceutical company, Angiochem, gets final approval and apparently there is some concern regarding his paralysis. A treatment is scheduled for thursday, but is contingent on final approval and we won't know if we have that approval until after we will have already left the house.
Kev decided he wants to try the trial and if it doesn’t work, i.e. tumors grow & his arm further degrades he’ll quit and switch paths.
Thursday proves to be an interesting day….
Monday, June 23, 2008
Hospitalized Again
On Sunday we ended back up in the ER. Kev was having some loss of control and strength in his left hand/arm and after speaking with his Drs, it was decided to go in for an assessment. Nothing much has happened so far. They pretty much agree that this could be caused by what’s going on in the brain or the spine or both so surgery doesn’t seem like such a good idea especially when surgical risks are accounted for. Radiation is still on the table - both stereotactic or full brain but any of these options would just further delay the possibility of entering a trial. So it seems like the decision we made on Friday – enter into the trial with Targeted Therapy if accepted and consider radiation if not accepted – is still the best. But that being said, Kev’s regular neurosurgeon was not available for consult today, so we’ll speak with him tomorrow and then make a final decision.
On a favorable note, the strength/control loss he experienced on Sunday has not further degraded, nor has it affected the right side. So hopefully it has stabilized. They have him on high dose steroids again to see if that helps. Thanks for all the payers and positive thoughts. Kev is understandably anxious about this latest development, but is doing well.
On a favorable note, the strength/control loss he experienced on Sunday has not further degraded, nor has it affected the right side. So hopefully it has stabilized. They have him on high dose steroids again to see if that helps. Thanks for all the payers and positive thoughts. Kev is understandably anxious about this latest development, but is doing well.
Sunday, June 22, 2008
Iron Man
Kev has wanted to see Ironman, but due to his busy schedule we hadn’t been able to fit it in. Yesterday afternoon, we finally went – and it was a great movie. Kev was especially excited to see the C-17 used in the movie was the same T1 article that he flew on himself during flight test days. (Kev work on the C-17 program from ’85-’96 starting with original design and following through with flight test and production). And during one scene the main character, Tony Stark, walks off the plane via the Cargo Ramp so we enjoyed up close viewing of the Cargo Door, Ramp and Toes – all of which Kev was intimately involved with during original design. He easily identified the T1 article by the unique hardware installed and was even kind enough to explain each one to us throughout the scene so we too could enjoy the moment. :-) Luckily the movie theater was not very crowded for the matinee showing otherwise we’d have been booted out for talking too much.
The scan results we received on Fri were not good – 3 new brain metastases and numerous additional (although small) subarachnoid/leptomeningeal metastases. But Kev’s oncologist is always optimistic so even though he went through the scans very thoroughly with us, we focused mostly on our options. We have an appointment with the Targeted Therapy on Wed and a tentative treatment scheduled for Th. He seems to think the experimental trials offered by Targeted Therapy are our best option, but we haven’t seen a protocol yet, so we don’t know exactly what these trials involve. If we get accepted, that’s the approach we’ll follow. If we don’t get accepted then we have radiation & surgery options for the brain.
The scan results we received on Fri were not good – 3 new brain metastases and numerous additional (although small) subarachnoid/leptomeningeal metastases. But Kev’s oncologist is always optimistic so even though he went through the scans very thoroughly with us, we focused mostly on our options. We have an appointment with the Targeted Therapy on Wed and a tentative treatment scheduled for Th. He seems to think the experimental trials offered by Targeted Therapy are our best option, but we haven’t seen a protocol yet, so we don’t know exactly what these trials involve. If we get accepted, that’s the approach we’ll follow. If we don’t get accepted then we have radiation & surgery options for the brain.
Wednesday, June 18, 2008
Scan Day
The PET scan was scheduled to begin at 7:30 am, after waiting to be called and prep work, they inject him with Fluorine-18 / glucose mixture [F-18 fluoro-2-deoxyglucose (F-18 FDG)], which apparently makes him so radioactive that I am not allowed to stay in the room with him. After 1.5 hrs of isolation, the scan begins which takes another 1 hour. So finally at close to 11:00 he finishes up. The MRI was scheduled for 7:30 pm, but we were hoping to sneak in earlier if they had any cancellations and avoid a long day at the hospital. (Kev did not feel up to travelling back home to only round-trip again later in the afternoon). We had a leisurely lunch, relaxed in the Sundial area which has a nice view of Holcomb Ave and various large construction cranes. (Kevin and Nick share a love for construction equipment - amongst other things. I think Nick could say “excavator” before he could say “momma”). They finally let us check-in for the MRI around 5:00 on a “stand-by” basis and gave a beeper so we weren’t confined to the small waiting room. Unfortunately, there were no cancellations and Kev finally went in for the MRI at 9:00 – after1 ½ hrs for the procedure, we should be home by midnight….Results on Friday.
Sunday, June 15, 2008
Reorganizing
This has been a good week for Kev – he has felt well and is in very good spirits. PT & OT each came twice this week and we also had a visit from a nurse. So each day brought visitors.
We have spent most our time reorganizing the house to accommodate his wheelchair and reorganizing our life to fit his new schedule and special needs. Phil stayed with us last week to help with the reorg and keeping Kev entertained. Luckily the wheelchair is narrow enough to fit through the door frames, so most the work has primarily been clearing out translation paths and raising tables etc. He now fits at his desk and has access to his laptop and can also sit at the kitchen table with us.
His new schedule and special needs seemed horribly daunting at the beginning of the week, but they are starting to become routine. He needs help getting in and out of the wheelchair and most items are out of reach – there is very little he can do entirely on his own, although there are many things he can do 90% on his own. We’ve figured out ways to keep the items he needs regularly more accessible to help him be more independent. This has been a learn-as-you-go activity.
Kev’s dad and brother, Tom, arrived yesterday and they are going to be adding more “improvements” this week.
Here’s a couple of pictures of Kev navigating the ramp on his own and visiting with Phil under one of the shade trees.
We have spent most our time reorganizing the house to accommodate his wheelchair and reorganizing our life to fit his new schedule and special needs. Phil stayed with us last week to help with the reorg and keeping Kev entertained. Luckily the wheelchair is narrow enough to fit through the door frames, so most the work has primarily been clearing out translation paths and raising tables etc. He now fits at his desk and has access to his laptop and can also sit at the kitchen table with us.
His new schedule and special needs seemed horribly daunting at the beginning of the week, but they are starting to become routine. He needs help getting in and out of the wheelchair and most items are out of reach – there is very little he can do entirely on his own, although there are many things he can do 90% on his own. We’ve figured out ways to keep the items he needs regularly more accessible to help him be more independent. This has been a learn-as-you-go activity.
Kev’s dad and brother, Tom, arrived yesterday and they are going to be adding more “improvements” this week.
Here’s a couple of pictures of Kev navigating the ramp on his own and visiting with Phil under one of the shade trees.
Sunday, June 08, 2008
Home Again
Kev had a great week and was able to come home Saturday afternoon. On Monday OT/PT had him exercising in bed. On Tuesday they used a hoist (think engine puller) to transfer him from his bed to a wheelchair. By Wednesday he was using a slideboard for the transfers and when the Drs. had their eval later that day they were impressed enough with his progress that they agreed to Kev’s request to come home as soon as possible, targeting the following Sunday or Monday. On Thursday and Friday I had to participate in the training – learning to use a slide board for transfers to/from bed and the car. On Friday OT had him taking a shower with the help of a special shower stool and Kev was pushing for a Saturday release. With the good reports from OT & PT the Dr. agreed Saturday morning to a release later that day :-)
Kev had a couple of his college (CU) buddies in town – Phil Girard & Ken Leiden. They helped us get Kev moved from the hospital back home and cooked up dinner Saturday night. We had a great time relaxing at home and playing cards. Kelden wiped out everyone in 5-card-draw, and then Ken taught us a new game – liar’s poker.
The ramp worked GREAT! It was an easy transfer from the car to the house for Kevin. Laura also informed me this week that not only had the guys at work donated their time and efforts but they also donated all the $$ to fund the project!! You guys are awesome! Thank you so much – it is greatly appreciated! If everything continues to go well with Kevin we are planning on having a 4th of July party - you may have noticed when you were here that we having a great view for watching the Kemah fireworks show. We hope you all can make it - we'd love to thank you all in person.
Kev had a couple of his college (CU) buddies in town – Phil Girard & Ken Leiden. They helped us get Kev moved from the hospital back home and cooked up dinner Saturday night. We had a great time relaxing at home and playing cards. Kelden wiped out everyone in 5-card-draw, and then Ken taught us a new game – liar’s poker.
The ramp worked GREAT! It was an easy transfer from the car to the house for Kevin. Laura also informed me this week that not only had the guys at work donated their time and efforts but they also donated all the $$ to fund the project!! You guys are awesome! Thank you so much – it is greatly appreciated! If everything continues to go well with Kevin we are planning on having a 4th of July party - you may have noticed when you were here that we having a great view for watching the Kemah fireworks show. We hope you all can make it - we'd love to thank you all in person.
Monday, June 02, 2008
rehab begins
Kevin finally moved to the 8th floor on Friday. (new rm # 811 & phone # 713-834-8719) Approvals from multiple departments in addition to our insurance were required and the paperwork took longer than we had hoped. He did get a little PT on Thursday, Friday and Saturday, but the full program started today – 1 hr of PT, 1 hr of OT & 1 hr of group therapy. On Thursday & Friday he experienced a couple bouts of nausea. At first he thought maybe he overdid things a bit but the following time it happened he had only been resting. He has also been battling an urinary infection, likely caused by incomplete emptying of the bladder. The rehab nurses were astonished that the oncology nurses had not performed a bladder scan – which on Friday night determined his bladder was way backed up. After an internal catheterization and draining of 1.5 liters everybody was much happier all around. He is now on an every-4-hrs catheterization program round the clock. In addition it was decided that a full bowel cleansing was also required prior to starting the bowel management program. These guys are serious about their bladder and bowel functions – something most of us take for granted.
We had a nice little birthday party at the hospital for him on Sunday – even had some good
participation from the staff. After we finished up our cake we took him back to his room only to find the staff had also brought him a cake. This was then followed by a timely visit from the dietician who, after reviewing his menu items, mentioned he needed to start eating more protein and less sugar :) Apparently he is still losing weight even though he has been eating 3 good meals plus a late afternoon banana split each day. They have him currently at 135 lbs – which is alarmingly thin for a 6-ft tall man. We shared the blog entry with him and he definitely enjoyed it, adding that soon after the picture was taken of him on his brand new 10-speed he rode it down the street and ran straight into a parked car then limped timidly back home. He claims he was watching for moving cars in the distance…I’m sure there’s a Chinese proverb that sums that one up. Anyone know it?
Therapy sessions went well today, but he did say it was pretty hard. PT has him working on his trunk muscles i.e. abs – essentially they had him sit up in bed and hold the position without the use of his arms/hands. OT had him brush his teeth, wash his face and generally clean up a bit. Group therapy? well, he would only say “it was interesting”. It’s nice Kevin is not having any pain issues any more. He is in good spirits, very alert, but is also apprehensive about what lies ahead.
We had a nice little birthday party at the hospital for him on Sunday – even had some good
participation from the staff. After we finished up our cake we took him back to his room only to find the staff had also brought him a cake. This was then followed by a timely visit from the dietician who, after reviewing his menu items, mentioned he needed to start eating more protein and less sugar :) Apparently he is still losing weight even though he has been eating 3 good meals plus a late afternoon banana split each day. They have him currently at 135 lbs – which is alarmingly thin for a 6-ft tall man. We shared the blog entry with him and he definitely enjoyed it, adding that soon after the picture was taken of him on his brand new 10-speed he rode it down the street and ran straight into a parked car then limped timidly back home. He claims he was watching for moving cars in the distance…I’m sure there’s a Chinese proverb that sums that one up. Anyone know it?Therapy sessions went well today, but he did say it was pretty hard. PT has him working on his trunk muscles i.e. abs – essentially they had him sit up in bed and hold the position without the use of his arms/hands. OT had him brush his teeth, wash his face and generally clean up a bit. Group therapy? well, he would only say “it was interesting”. It’s nice Kevin is not having any pain issues any more. He is in good spirits, very alert, but is also apprehensive about what lies ahead.
Sunday, June 01, 2008
Happy Birthday
Happy 45th Kev! Here's some from the scrap book...
1964, Fairfield, CA
1967, Altus Air Force Base, OK
1964, Fairfield, CA
1967, Altus Air Force Base, OK
1976, Beaver Creek, OH
13th birthday with his brand new 10-speed
-the picture was black & white, but based on Kev's desciption of his orange bike and purple plaid pants, Kelden did some color enhancements :-)
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