Good News and Bad

I've been asked by many people why I haven't written on the blog for so long, but Jim has been doing well--sleeping much better than before, walking mostly with a cane, but uses the walker when the distance is too far (this walker has a seat on it which allows him to sit and rest whenever he tires). He still has some insomnia, but not nearly like before. We went to our house on Long Beach Island for six days last week (first time since last November) and I think the ocean air was good for him--he slept well for 6 nights straight! He is neutropenic again--absolute neutrophil count (ANC) below 1000, but trending up. This happened in mid-August as well, but gradually came up. People at NIH say that about 30% of patients treated with Rituxan have a dip in their neutrophil count months after receiving it and of course we all know that if there is a complication or adverse reaction to anything, Jim Fay will get it!!!! While he is neutropenic we have to be extremely careful because his immune system is compromised (constant hand-washing, avoiding crowds, wearing a mask when he goes out, no kissing and hugging, taking temperature every day and if fever, getting to a hospital for immediate treatment with IV antibiotics). We were at NIH today and need to return in 2 weeks for another blood test. So that's it as far as Jim's health is concerned (Oh yes, and I'm getting more sleep!) Barbara
Sadly, we have to report that our daughter-in-law, Sarah's brother Scott (age 33, father of two and husband of Joleen) died today in Seattle after a 3 month battle against Burkitt's Lymphoma. Please keep him and all the family in your prayers.

Jim celebrates being home

I'm sure many of you are all anxious to learn how Jim is doing . I think this picture is worth a thousand words .



Your blogmaster Andy

A Normal Life

Life seems to be getting back to normal. Jim had a good night's sleep last night (sans sleeping pill!) Today we went to the gym and he is walking with a walker a little further every day and faithfully doing the exercises that daughter-in-law, Ann, the physical therapist extrordinaire, instructed him to do. Each day he is stronger and his appetite is great! Tomorrow night he will join the ROMEO's at their favorite restaurant. Thanks to all our supporters! Barbara

DEO GRATIAS

MY DEAR FRIENDS, AND I WILL NOT ENUMERATE ALL OF YOU BECAUSE I ONLY HAVE 3 INK CARTRIDGES LEFT. THIS REMISSION WAS CAUSED PRINCIPALLY BECAUSE OF THE PRAYERS, HOPES, AND INTERCESSIONS OF ALL OF YOU. I CANNOT ADEQUATELY EXPRESS HOW GRATEFUL I AM FOR YOUR CARING. YOU HAVE SAVED MY LIFE AND DARE I SAY THE LIVES OF ALL MY FRIENDS, RELATIVES AND ALL THOSE I HAVE COME TO KNOW, LOVE, AND RESPECT OVER MY 70 ODD YEARS. YOU ALL WILL REMAIN FOREVER IN MY HEART. LOVE, JIM

CELEBRATE WITH US!!!!!!

Yesterday at NIH we found out that Jim's CT scans showed that all of his lymph nodes have gotten even smaller than the CT scans in June! The bone marrow biopsy showed that the marrow was clear except for 5%. That 5% consists of CLL cells which is so minimal that the doctors are not concerned. Doctors are very pleased and don't need to see him for 3 months! So we are greatly relieved and thank God for this blessing and thank all of you for all the prayers and loving concern. Another bonus--Jim slept for 10 hours last night! Love to all, Barbara

More Normal

Still having ups and downs with the sleeping (last night a good night/Friday night a disaster). PT is down to twice a week for 2 more weeks and that has really made Jim stronger. His appetite is back to normal also (a side effect of one of his drugs is "overeating") so I think we'll be seeing a weight gain soon. He entered a weight bet with Frank Birkenseher --Frank has to lose and Jim has to gain! Poor Frank--didn't know about the side effect of the drug--maybe you should cry foul! Anyway, things are looking more normal. Jim wanted to go to church today, so we did. We went to Queen of Peace and saw Mike Hanna (a long-time high school friend of Mike's) directing the choir. It was a wonderful liturgy--so we may have discovered a new church to go to! Barbara

Back to NIH Tomorrow

A little change in plans. The bone marrow biopsy was moved up to tomorrow (Wed. 8/12) and because we decided not to go away with our kids to LBI next week (Jim is afraid to go so far away from his doctors), the new date for CT scans and clinic appointment is going to be Thursday, Aug. 20. We should be getting an update of Jim's progress on that date. Naturally we're hoping that he is in remission, but that mysterious low neutrophil count is nagging away at us. I went to a support group for caregivers of patients with Cancer last night with Erin (her idea) and found it very helpful. I was amazed at how many people are facing the same issues as we are and how hard it is. Jim only had one hour of sleep last night so I've hired Tsega, the Home Health Aide, back for tonight. Also, Dr. Roath, whom we saw today, explained that his body is getting used to the Lunesta that he takes to help him sleep at night. Therefore he has to skip it one night every week to allow it to get a "kick start" again. He will be taking Melatonin tonight--don't know if it will do anything, but worth a try. Happy dreams you all! Barbara