09/25/09 Day + 43

09/25/09 Again my apologies for taking so long to update you on how Joe is doing, this past week has been a better one for Joe he is showing signs of his strength returning and he is becoming more of his old self. He is talking more and I actually heard him laugh for the first time in months it was wonderful. We go to the doctors and have his blood drawn on Thursdays and he gets checked over by his hematologist here in Syracuse. There have been a few worries but nothing to serious, one his white count is now high which could mean infection but he has no fever or any other signs of infection so there are few other indicators that show he could be having an allergic reaction to something perhaps one of his meds? They are going to start monitoring it to see if they can figure it out. His red count is down which worries me but they say it is normal for it to go up and down at this stage of treatment, it is not so low that he needs a transfusion. He still is not sleeping well so they are going to do a thyroid panel to see if one of his meds is causing Hypo thyroid. I have gotten my first flu shot and I am in line to receive my H1N1 shot in October. Clorox bleach is now my normal odor I smell it in my sleep. Still wiping everything down, constant hand washing and antibacterial hand sanitizer it is so important that Joe does not get any kind of germs or infection right now. The first 100 days from the day of Joe's Stem Cell Transplant is high risk period for infection. One major milestone coming up for Joe is November 21st that will be Day 100 from his stem cell transplant. From a medical perspective, this is a very important day as it represents the closing of the risk period for the stem cell transplant and the high dose chemo. August 13th was Joe's "new birthday" and November 21st will be his 100th day. His immune system will still be compromised for 6 - 12 months but he will be able to fight off infection a little better than he could that first 100 days which could be fatal if he was to get a serious infection. Well I have to say it again we were just amazed at the response to the benefit so many people came out and so many people gave donation of food and prizes, so much work went into the planning. We did not know how to Thank everyone I have been trying to send out a Thank you letter to the ones that I know of who donated or helped. I have also published the letter in three newspapers it should be in the Post Standard, Pennysaver and Citizen Outlet over the next week but in case I don't reach everyone I have copied it below I just don't want to not get it to everyone who helped us. I return to work on Monday so hopefully Joe will be ok without me, my daughter inlaw is home next door and so is my sister inlaw on the other side of us. We also have wonderful neighbor's and family who have said they will check in on him. God Bless and We love you. See letter below:

Dear Family, Friend, Neighbor, Donor, Contributor and Giver;

We can not begin to put into words what your gifts and kindness mean to us. The money without a doubt is helpful and will go to extremely good use. But more than the monetary value, we so sincerely appreciate the kindness and generosity behind the gifts. A life threatening illness is a burden you never really plan for, but your goodwill has really helped with that burden. For that above all, we thank you.

To all of you who had a hand in the benefit, there are so many of you who donated your time, gifts, money, food, the hall, did a bottle drive, golf tournament and so much more, also so many of you who came out to the benefit to show your support. We could never say enough to thank you, your compassion and concern is awesome.

This journey has been a difficult one for us, with still a long road ahead of us but knowing we have the support and love of people like you certainly helps. Please know we will not forget your kind gestures. Thank you again from the bottom of our hearts and God Bless You All always.

Love and Gratitude,

Joe and Mary Bateman

09/15/09

09/15/09 First my sincere apologies for the delayed update. I realize how much support, and concern for Joe exists, and I have been slow in providing updates this week. It was much easier back in Boston in the apartment when my focus was 100% on Joe, but back here at home the normal family demands pile on quickly - Again my sincere apologies. So Joe is doing pretty good his strength is coming back and the rash is still getting better. His weight is still the same though he is eating better he has not gained any weight he is staying around 183 he started at 214 when he got sick and 204 when he started chemo. We went to the doctors last Thursday and some of his levels have come up some more, though his potassium and sodium were low. It is not like when we were in Boston and they would go over all the blood work with us each day because they would have the test done stat. I have to wait until Joe's next appointment on Thursday to get the rest of the results and then ask questions. They called and left us a message about the potassium and sodium and I have to believe if there was anything else we needed to know they would call. They also fax all test results to Joe's doctors in Boston so if there was something to worry about they would call us. Joe is having a terrible time sleeping, he just can't fall asleep at night so it makes it tough for both of us since I have to set the alarm to get up at 6:30 am to give him his meds and he goes back to bed and I stay up for the day. So usually I try to hit the sack early if possible. Well we have been doing good at keeping Joe germ free so far, the first 100 days are the high risk days after the stem cell transplant this when the patient is at the highest risk of getting a life threatening infection and everyone has been so careful of not getting Joe sick. Thank you. Well Duncan tore his ACL in his knee last week and has to go to the vet tomorrow to start acupuncture, he needed surgery but they do not think he is strong enough to survive it so now I have two patients to care for. Friday was the funeral and it was a very beautiful service, though it still does not seem real to us, with so much going on we don't seem like we have had the time to mourn maybe now. What a benefit on Sunday for Joe it was amazing, I was brought to tears when Joe and I walked in and seen the amount of people who were there to support us. Again I have to thank all our family and friends and all the people who volunteered or donated toward the benefit God bless you for your hard work and kindness. Joe has a long road a head of him in his battle against this terrible disease Amyloidosis, but with all your support and prayers it makes it a little easier. Hopefully when we go back in February Joe will get the complete response we are praying for. We love you and keep praying for a complete response.

09/06/09 We Are Home

09/06/09 So we are home it has been a busy week since we arrived on Tuesday afternoon, the ride home took a lot out Joe though my brother Tom made frequent stops along the way so Joe could get out of the car for a few minutes and breath some fresh air. Our dog Duncan was very happy to see us, we called ahead and made sure my daughter in-law took him out before we arrived so he did not have any accidents when we got there. We thought if we both went in at the same time it would be to much on him so Joe went in first and I went next store to see the grand baby who at six months I was afraid would not remember me, but after a few minutes of talking with him he gave me a big smile and he did not forget is grandma and papa. Duncan was so happy to see me he did not leave my side. We have limited company this week Joe is still not feeling up to it and we have to be careful of exposure to germs and especially anyone with colds, flues or any other sickness that are contagious. My sisters came over before we came home and cleaned up a bit, our 26 year old son has been staying here taking care of the house while we where gone not that he did not do a good job but it needed a good wipe down to make it germ free. They put hand sanitizer in all the rooms and Clorox wipes through out the house. When I got here on Tuesday it still did not seem clean enough so I took bleach and water and wiped the kitchen and both bathrooms down and washed all the throw rugs. Wednesday I finished up with the rest of the house. Joe's rash is just about all gone and we think he may have stopped losing his hair, one thing he has noticed is he has not needed to shave at all this week. His legs are still hurting most of the time so I have been massaging his calves and feet and he still does not sleep well if we get three solid hours we are doing good the rest is broken up. My sister in law Dona and me, my son Todd and my niece Nicole had to clean out my mother in laws apartment today that was real hard, her funeral is going to be Friday it still does not seem real. The obituary should be in the paper on Wednesday I know several people have asked, they waited a bit longer so Joe could be a little stronger. We go to the hematologist on Thursday to see how he is doing and to find out where is levels are at. One thing the doctors have told Joe is that it is going to take awhile to get back his strength and I know this is very hard on Joe because he wants to feel better, which he is starting to but he wants to be himself again quicker and it is a slow process. I will be home with him for two more weeks, I have to say I have a great boss and place of employment to stick by me through this and show me all the support they have. I want to Thank everyone who has been involved in the planning of the benefit for Joe, I can't believe it is a week away it seems like just yesterday when the kids heard that Joe was very ill and would need Chemo and Stem Cell Transplant and they said they wanted to have a benefit. I was just saying today that I can not believe how many people have worked so hard at getting donations, selling tickets, getting prizes, food, the hall, the list just goes on my heart just swells to think that so many people care we are so blessed to have such wonderful families and friends and all their wonderful families and friends. We love you, good night and god bless.