Difficult 2 Weeks - New Direction
As many of you know this has been a very challenging 2 weeks. On Monday, November 3rd, as we were preparing to go to UCLA for chemo, Keith suffered a grand mal seizure. We called 911 and within minutes a bevy of firefighters arrived to transport Keith to the ER at Kaiser. At Kaiser we did a CT scan and huddled with our oncologist. It was a long day - but there were no blood clots or new swelling indicated on the CT scan - the conclusion was that we needed to increase the anti-seizure meds. We headed home - unsettled by the experience but grateful that it didn't seem to stem from any unwanted complications. Unfortunately, we missed our chemo drip for the week.
As is typical post seizure, Keith was very sleepy for the next few days - those who visited found that he was only up to a few words (if any). Thursday, just as he seemed to be regathering strength, he met up with another round of diarrhea. This onslaught was relentless - we didn't sleep at all Thursday night going back and forth to the bathroom - both of us were completely drained. Again, he spent the next few days regathering his strength.
Monday (the 10th) we headed off for UCLA, mindful of the prior week's trauma. All went off smoothly, but it was another long and exhausting day. Keith fell asleep minutes after we arrived home (4 pm) and woke only to eat some dinner and take his meds for the next day or so.
The trend for the balance of the past week has been a gradual decline in Keith's ability to control the left side of his body. His sensation is diminished and he is very weak. He is unable to support himself or rise to a seated position and he is not able to walk without considerable assistance. Transfer to the wheelchair requires considerable effort.
Looking back over the 2 weeks, it is clear that we have been losing ground. Saturday we did our 1 month progress MRI and we had the readout yesterday. We were not surprised that the MRI showed that there has been no progress with the study regime - and as suspected there is renewed activity on the motor strip which is the likely cause of the loss in motor abilities on Keith's left side. Yesterday, we consulted first with the Kaiser team and then traveled to UCLA to meet with that team. The consensus from both sides was that we withdraw from the experimental study and begin treatment with Avastin in combination with Carboplatin. This morning (Tues, the 18th) we are at Kaiser awaiting the first 3 hour infusion. Future infusions will occur every 2 weeks. These drugs have fewer side effects so Keith's quality of life should be a bit better - less tired, no diarrhea, no more skin rash.
We have been greatly helped by friends near and far over the last few weeks - there are no words to express our gratitude - but thank you to all our heroes.
As is typical post seizure, Keith was very sleepy for the next few days - those who visited found that he was only up to a few words (if any). Thursday, just as he seemed to be regathering strength, he met up with another round of diarrhea. This onslaught was relentless - we didn't sleep at all Thursday night going back and forth to the bathroom - both of us were completely drained. Again, he spent the next few days regathering his strength.
Monday (the 10th) we headed off for UCLA, mindful of the prior week's trauma. All went off smoothly, but it was another long and exhausting day. Keith fell asleep minutes after we arrived home (4 pm) and woke only to eat some dinner and take his meds for the next day or so.
The trend for the balance of the past week has been a gradual decline in Keith's ability to control the left side of his body. His sensation is diminished and he is very weak. He is unable to support himself or rise to a seated position and he is not able to walk without considerable assistance. Transfer to the wheelchair requires considerable effort.
Looking back over the 2 weeks, it is clear that we have been losing ground. Saturday we did our 1 month progress MRI and we had the readout yesterday. We were not surprised that the MRI showed that there has been no progress with the study regime - and as suspected there is renewed activity on the motor strip which is the likely cause of the loss in motor abilities on Keith's left side. Yesterday, we consulted first with the Kaiser team and then traveled to UCLA to meet with that team. The consensus from both sides was that we withdraw from the experimental study and begin treatment with Avastin in combination with Carboplatin. This morning (Tues, the 18th) we are at Kaiser awaiting the first 3 hour infusion. Future infusions will occur every 2 weeks. These drugs have fewer side effects so Keith's quality of life should be a bit better - less tired, no diarrhea, no more skin rash.
We have been greatly helped by friends near and far over the last few weeks - there are no words to express our gratitude - but thank you to all our heroes.
posted by Keith and Kathy | 5:27 PM
6 Comments:
We really admire you guys for your strength. All our love,wishes, hope and thoughts with you. Kisses Natasha and Yiorgos
Dear Kathy,
With all the stresses and traumas you are all going through, we trust that those around you and supporting you are also able to provide you with some respite care, so that you don't become totally worn down by the strain.
Our thoughts are with you and the family.
Love from Melbourne,
Jos and Ken
We're thinking of you here! I hope the Avastin and carbo are easier on him and make life more comfortable. You're all in my prayers.
we are thinking of you and hope the avastin combo is bringing help and relief. Our thoughts and prayers are with you.
Please call or e.mail if there is any more help you could use for anything.(we are neighbors)
ldelagasnerie@sbcglobal.net
323 663 7235
Michael and laetitia
My dear Keith and Kathy -
I have been thinking of you so much. My thoughts and prayers are with you. Please let me know if I can be of any assistance - 949 533 6425
love
Nadine
Dear Keith and Kathy,
Thinking of you often. Keith, I have been really glad we were able to spend more time together while you were still relatively well - it made up for the non-time when we were all kids!
Hope you are a bit more comfortable now.
Love to you all,
Ian De Saxe.
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