Wednesday, November 26, 2003
Day 42 Sorry this post is so late. We went to John's appointment today and Dr. Stein was running late. Then we had to rush to the Marriott to check in and put all the food that needs to be refridgerated away. But the real reason I am so late in posting is John and I went to the movies! What a victory it is to have John out, not just because he is doing so well, but he is gaining more energy each day. He didn't even nap today. No instead I am sitting here at the Marriott watching John cook pizza for dinner, begin macaroni and cheese for tomorrow, peel potatoes, roast garlic...do you get the picture. John is well because he is in his element...a full kitchen.
The nitty gritty of John's doctor appointment today is that he is doing really remarkable. His hemoglobin is up to 10 (it was 8.5 on Sunday) and his platelets are finally going up again. Dr. Stein said they were falling from all the anti-GVH and CMV medicines. Over the last few days they have been cutting down the dosage of the prednisone(GVH), gladcyclovir (CMV) and cyclosporin (anti-rejection). The best part of less prednisone is John is not as edgy or cranky. Also rapidly leaving is the moon face the prednisone causes.
We are planning to celebrate Thanksgiving giving special thanks to the giver of John's new life, his donor. We are so grateful that the doctor took the time needed to donate stem cells for John. We are also grateful that Dr. Stein continued looking for a solution to John's health problem even when umbilical cord blood feel though, and the first donor backed out. Dr. Stein did not give up on John and he is directly responsible for saving John's life. We of course are grateful for Dr. Wolf and the staff at Alta Bates for the last year of care (Hi everyone), and to Vicki, my co-worker in the ER (you know what you did) and Janet, my rock. I know the list is incomplete, but I have to especially thank Jackie, Tricia and Nasrin for holding down the fort at Tresses and helping me in countless ways. My very supportive family (Aud, Laura, Jen, Bill, John) who have taken turns flying down to see us, helping me have some respite. Bowman who has put up with more than any boyfriend should. John and I have to acknowledge Jim (John's Pop) who took the time to transfer his employment to be closer to John. Lastly to my other precious son, Scott, Love to you and please tell the cats we miss and love them.
We will post on Monday after John's appointment, which is in the morning so the Nitty Gritty will not be late.
The nitty gritty of John's doctor appointment today is that he is doing really remarkable. His hemoglobin is up to 10 (it was 8.5 on Sunday) and his platelets are finally going up again. Dr. Stein said they were falling from all the anti-GVH and CMV medicines. Over the last few days they have been cutting down the dosage of the prednisone(GVH), gladcyclovir (CMV) and cyclosporin (anti-rejection). The best part of less prednisone is John is not as edgy or cranky. Also rapidly leaving is the moon face the prednisone causes.
We are planning to celebrate Thanksgiving giving special thanks to the giver of John's new life, his donor. We are so grateful that the doctor took the time needed to donate stem cells for John. We are also grateful that Dr. Stein continued looking for a solution to John's health problem even when umbilical cord blood feel though, and the first donor backed out. Dr. Stein did not give up on John and he is directly responsible for saving John's life. We of course are grateful for Dr. Wolf and the staff at Alta Bates for the last year of care (Hi everyone), and to Vicki, my co-worker in the ER (you know what you did) and Janet, my rock. I know the list is incomplete, but I have to especially thank Jackie, Tricia and Nasrin for holding down the fort at Tresses and helping me in countless ways. My very supportive family (Aud, Laura, Jen, Bill, John) who have taken turns flying down to see us, helping me have some respite. Bowman who has put up with more than any boyfriend should. John and I have to acknowledge Jim (John's Pop) who took the time to transfer his employment to be closer to John. Lastly to my other precious son, Scott, Love to you and please tell the cats we miss and love them.
We will post on Monday after John's appointment, which is in the morning so the Nitty Gritty will not be late.
Monday, November 24, 2003
Day +40 WE ARE MOVING TODAY!!!! John passed all tests and we are moving to Parson's Village. The address: John Sanchez, C/O COH, Parson's Village Room 154, 1500 East Duarte Road, Duarte, Ca 91010. The phone number is: 626.359.8111 ex. 64854.
Currently we are waiting for last minute medications and I will take a trip to the hospital pharmacy to pick up John's bag 'o pills. John will be on 11 twice daily medications and one twice weekly medication to keep is new immune system healthy. John is going to still be immune compromised because of the medications John will be taking for at least the next 6 months. Last night I found post on one of the support sites and a woman from Australia was celebrating her one year Post MUD BMT for AML M0. She took her last pill with a group of good friends. I found this to be really reassuring to find this post the night before John is discharged from the unit. Any positive sign is a good message.
Today we asked Dr. Stein the final results of 30 day bone marrow biopsy. He says it was 100% donor cells. We are happy about that.
I think unless something really interesting happens I will continue to post on the blog after Johns twice weekly clinic appointments. I am sure that as you have enjoyed the daily updates, you can only read so many squirrel stories...Speaking of squirrels. As you last read I mentioned the possum that was cleaning out the bird feeder each night and how it was becoming a problem for the squirrels on the weekends because by Saturday the feeder was empty and the Garden is locked on weekends. Well yesterday when all the food was gone, including the peanuts I threw over the fence one of the squirrels had a full blown ing-bing. This creature began to vandalize the feeder! It chewed a piece of the feeder off and then stared at us in a defiant manner daring us to do anything about it. Our plan is to take the feeder down today and I will continue to throw peanuts over the fence to wean the gang from easy food. I do have to admit I have really enjoyed watching the different squirrels and each of their feeding styles. As many hours as I have spent in this room next to John, it really helped to pass the time in a pleasant way, especially during the tough days when John was at his worst.
John's appointment is Wednesday. I will write an update then.
Currently we are waiting for last minute medications and I will take a trip to the hospital pharmacy to pick up John's bag 'o pills. John will be on 11 twice daily medications and one twice weekly medication to keep is new immune system healthy. John is going to still be immune compromised because of the medications John will be taking for at least the next 6 months. Last night I found post on one of the support sites and a woman from Australia was celebrating her one year Post MUD BMT for AML M0. She took her last pill with a group of good friends. I found this to be really reassuring to find this post the night before John is discharged from the unit. Any positive sign is a good message.
Today we asked Dr. Stein the final results of 30 day bone marrow biopsy. He says it was 100% donor cells. We are happy about that.
I think unless something really interesting happens I will continue to post on the blog after Johns twice weekly clinic appointments. I am sure that as you have enjoyed the daily updates, you can only read so many squirrel stories...Speaking of squirrels. As you last read I mentioned the possum that was cleaning out the bird feeder each night and how it was becoming a problem for the squirrels on the weekends because by Saturday the feeder was empty and the Garden is locked on weekends. Well yesterday when all the food was gone, including the peanuts I threw over the fence one of the squirrels had a full blown ing-bing. This creature began to vandalize the feeder! It chewed a piece of the feeder off and then stared at us in a defiant manner daring us to do anything about it. Our plan is to take the feeder down today and I will continue to throw peanuts over the fence to wean the gang from easy food. I do have to admit I have really enjoyed watching the different squirrels and each of their feeding styles. As many hours as I have spent in this room next to John, it really helped to pass the time in a pleasant way, especially during the tough days when John was at his worst.
John's appointment is Wednesday. I will write an update then.
Sunday, November 23, 2003
Day +39 This morning John, Auntie Aud and I got a tour of the new room John will move to tomorrow morning. It is a pretty old cabin, but it has a small oven and four electric burners. When Auntie Jennifer and Scott arrive for Thanksgiving celebration they will bring Johns knives and a couple suitable pots and pans. John is planning on cooking pizza as one of his first meals.
Yesterday we had a feast courtesy of Aud. She made fresh beans and rice and we had burritos. Aud was planning on making some wonderful roast, but John's stomach was calling for beans. John was able to spend a few hours away from the unit working on his rug, watching Evil Dead and relaxing with all of us.
Hopefully the next post will be from our new resisdence. I will post the address and phone number as soon as we get it.
Yesterday we had a feast courtesy of Aud. She made fresh beans and rice and we had burritos. Aud was planning on making some wonderful roast, but John's stomach was calling for beans. John was able to spend a few hours away from the unit working on his rug, watching Evil Dead and relaxing with all of us.
Hopefully the next post will be from our new resisdence. I will post the address and phone number as soon as we get it.
