4/23 Wed. NIH
Glenna and I arrived on Sun. night at about 9:30pm to cheerful smiles from her nurses. Everyone knows her and she knows just about every body's name. It doesn't feel like we ever left.
Mon. - We met with her doctors to discuss some options. Nothing concrete until MRI and ct scans comeback. Late in the day the teem comes in to give us the results and their thoughts. The good news is that the bleeding appears to be under control; the bad news is that they see 4-5 more spots in her brain. Dr. Rosenberg explains that they are concerned about lowering her platelet count so that if there was any bleeding it wouldn't be able to stop. The idea is to save her life not kill her in the process. We are told they will have another meeting tomorrow to try and decide what if anything they can do. They also want to do some more tests on her cells to be absolutely positive they are what they want and are growing well. Not a very comforting end to the day.
Tues. - Dr. Mathur comes in to let us know that she heard the cells look really good and they are are talking about possibly doing the treatment minus the Cytoxan (the first two days of chemo). By doing this her white blood cells (platelets) would not be lowered.The reason for the week of chemo is to lower her lymphocytes which they tell us are already very low;so they believe that skipping the two days of Cytoxan and dropping her platelets may not be necessary. Glenna has been staying at the lodge with me while all this decision making has been going on and tonight we are joined by Jacob who flew in from Hawaii!
Wed. - Today we are just hanging around enjoying the weather and waiting for the FDA to give its final approval to the change in the protocol. Glenna's spirits are high with Jacob being here. Unfortunately Colleen was to fly in today but she has come down with the bad cold that I just had before I came and will have to get better before they will allow her to come. As I sit here typing Jake and Glenna are down the hall working on a puzzle that she and I started 3 weeks ago joking and laughing together enjoying the time together.
Is the saying "Smooth sailing" an oxymoron? You need wind to sail, and so then it can't be smooth, right?
Obviously I have been ashore too long! Keep the positive thoughts coming!
Capt. Kohl
Mon. - We met with her doctors to discuss some options. Nothing concrete until MRI and ct scans comeback. Late in the day the teem comes in to give us the results and their thoughts. The good news is that the bleeding appears to be under control; the bad news is that they see 4-5 more spots in her brain. Dr. Rosenberg explains that they are concerned about lowering her platelet count so that if there was any bleeding it wouldn't be able to stop. The idea is to save her life not kill her in the process. We are told they will have another meeting tomorrow to try and decide what if anything they can do. They also want to do some more tests on her cells to be absolutely positive they are what they want and are growing well. Not a very comforting end to the day.
Tues. - Dr. Mathur comes in to let us know that she heard the cells look really good and they are are talking about possibly doing the treatment minus the Cytoxan (the first two days of chemo). By doing this her white blood cells (platelets) would not be lowered.The reason for the week of chemo is to lower her lymphocytes which they tell us are already very low;so they believe that skipping the two days of Cytoxan and dropping her platelets may not be necessary. Glenna has been staying at the lodge with me while all this decision making has been going on and tonight we are joined by Jacob who flew in from Hawaii!
Wed. - Today we are just hanging around enjoying the weather and waiting for the FDA to give its final approval to the change in the protocol. Glenna's spirits are high with Jacob being here. Unfortunately Colleen was to fly in today but she has come down with the bad cold that I just had before I came and will have to get better before they will allow her to come. As I sit here typing Jake and Glenna are down the hall working on a puzzle that she and I started 3 weeks ago joking and laughing together enjoying the time together.
Is the saying "Smooth sailing" an oxymoron? You need wind to sail, and so then it can't be smooth, right?
Obviously I have been ashore too long! Keep the positive thoughts coming!
Capt. Kohl
posted by Glenna @ 10:27 AM
3 Comments:
At 2:12 PM,
Anonymous said…
Good job on the blog, Cap'n. You're right, there's no such thing as smooth sailing - at least its not in our vocabulary! I miss you all so much. Patrick is doing great. He hasn't left my side today. I can't wait to come down and join the family. I love you all and will see you real soon. Mom
At 3:38 PM,
Anonymous said…
Even if the news of the day is less than inspiring, we're all so relieved to hear something - thank you for keeping us informed! Thinking good thoughts for all of you, hugs and kisses too...
At 10:35 AM,
Anonymous said…
Sending positive thoughts your way and praying that each day is better than the last.
I need to start sending you some more embarrassing pictures to put a smile on your face!! Can you update us all w/your building and room # down @ NIH when you have a minute?
Love you all so much,
Kelle
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