Update 4/25/2012

Hello all, Just a short update this morning. Everything has been going well the past week. Gennie has had a few small issues but nothing serious. She is visiting the clinic everyday for several hours. This will continue for sometime to come. Today she is having her first bone marrow biopsy since the transplant. Once we get the results in a few days we will know more about how engraftment is going. It is still early to see any graft vs host issues but we are getting closer. As you can tell from this post there is not much going on. We are thankful for that. The experience of coming here each day and seeing what some folks are going through is interesting and difficult. There are so many folks having a difficult time and it is sad to watch. You can tell some folks are struggling with the whole ordeal but having trouble staying upbeat. It is not hard to understand when you learn they have been dealing with issues for years in some cases. On the other had there are folks who seem to be doing great. It warms your heart when you see someone going through all of this and has a smile on their face. Right now Gennie is one of these people. I am going to do my best to make sure she stays one of the inspirations. With her it is not a difficult task keeping her smiling for others. As always thanks for the thoughts and prayers. We miss all of you but want you to know we are doing fine. I will post more when we get the results of the biopsy. That's all for now, Bob

More good news

I just got to the hospital today to find Gennie in her chair talking up a storm. It seems the doctors were all her a little while ago and they are amazed with her. She just keeps getting stronger. In fact she will probably get to leave the hospital byt weeks end. I now need to get in gear and go home to bring up the cloths she is going to need in the apartment. I will attend a caregiver meeting on Wednesday to learn about my diuties once she is released. Since this is a blog about being a caregiver I will share with you one lesson learned. Many folks told me to make sure and take care of myself as my help and energy would be needed soon. The other night I went home for the first time since getting to Richmond. I attended a good friends retirement party. John served our country in both active duty and government contracting for 47 years. It was a great party, and I also want to thank John for his service. It was good to see friends even if it was just for a few hours. It is humbling to know there are so many friends following all of this. Their support has made it much easier. I know any of you reading this fall into that catagory and I thank you again for your support. The moral to this is that it is very important to take time away from the "journey" and take a deep breath. It was needed and refreshing. OK now many of you have asked what they can do to help. Well I have an idea. In the hallway here is a note to the nurses and staff here. It ask them to support and donate to a fund raising event sponcored by the Massey Cancer Center. It is to raise money for folks who need the service here who may not be able to afford it. I am going to post the link. If you are inclined look at it and donate, supporting the team here on the bone marrow clinic. Find the space where it ask for honoring someone and put in Gennie's name. They have not asked me to do this but I think it would be nice to help them reach their goal. Doing it in Gennie's name would be a real surprise to them and make Gennie feel very nice. She doesn't know I am posting this either. BeTheOneRun.org is the site. the name of their team is Every Step of the Way. The money goes to pay for folks to sign up to be donors. The name of the capitain is Judy Davis. Find a team member and help them reach their goal. I had thought about running a donor sign up one day but this may be a better manner to help. Get your credit card out and send them $5, $10, $25, $50 or whatever you wish. Don't forget to put Gennie's name down. Now you know how you can help . Not just Gennie but many others. That's all for now folks, Bob

4/5/2012 Engraftment Day!!!

Today has been a big day in this trip. I woke up early so I came to the hospital. I thought they may remove the breathing tube today and I wanted to be here for that. I wanted to hear her voice. It was all I had hoped for. She went from having the tube removed to not needing oxygen at all this evening. She regained some strenght today and even asked the nurse if she could do some excercises with her legs. They had told her a therapist would be here to work with her soon and she wanted to get started before they got here. I need to clear one thing up. Gennie did not have a heart attack. The cardiologist was here and explained to me she had heart failure not an attack. He believes her heart may recover on it's own with time. They will continue to watch her and treat her as needed. The big news this evening was her BMT doctor was here and he told us the cells are engrafting. He actually said it was happening a little to quickly but not to worry. We just need to watch for GVHD issues from this point on. Skin rashes mouth sores etc... His thoughts were Gennie may be moved back to the BMT floor very soon, maybe even tomorrow. As good as these folks are here on Res ICU it will be good to have her back on the BMT floor. That's all for now, Bob

Update 4/4/2012

I have been waiting for some good news before posting an update. This morning I m able to do so. Although it is a baby step Gennie is responding more today. The respiatory doctor just left and said things were a little better today. They are going to run some test to see if it will be possible to remove the breathing tube in the next couple of days. Gennie is also much more alert today and reponding to comands. The doctor asked her to squeeze her hand and gennie did it. I showed her pictures of both grand children and the dog and she opened both her eys wide and her heart rate jumped. I swear I asked her if she felt any better today and she nodded her head yes. I am all to familar with the concept two steps forward and one step back. For now I will take joy in the two steps forward and deal with the one back hen it comes. The last few days has been very difficult. Watching her struggle and there being nothing I can do to help if terrible. The reports from doctors have been very guarded and low key. They have preparred me for the worst while telling me to hope for the best. They have a difficult job both in caring for the patient while dealing with the loved one. I try and make it ewasy on them but probably fail sometimes. There has been positive progress whith her kidneys, liver and now lungs. Yesterday they had a goal to meet with the fluid in her lungs and they say they met it. This is why she seems to be doing better. Now that they have the fluid under control the heart doctors may be able to start to deal with her heart issue. It is only operating at about 40%. The entire heart has failed not just one section. This is perplexing and will have to be dealt with. I have been told it may recover some on it's own but may not. The use of drugs to help will be considered after other progress has been made and in conjunction with the BMT doctors. Not to be forgotten about is the BMT itself. Right now we are waiting for engraphment. That is when the new cells start to work within her body. Today is day 6 and that typically happens around day 10 to 14. Her complications have caused some changes in her treatment. Mostly the use of some anti-rejection drugs has had to be modified. I am not sure just what has changed but some things have. I have been told not to worry about these changes as the doctors are well versed in these type of complications. As for me I have been surrounded by my kids, and my brother. The other day many of you helped move my belongings to Richomond and for that I thank you. Gennie's brother and my brother ,Bill, and sister-in-law have been upp to check on me also. My brother, Dave, has been here and still is. My brother, Chuck, hase offered to come anytime I may need him but I have told him I am fine. Last night was the first I was alone and I have to tell you it was difficult. I made the mistake of listening to some old phone messages Gennie had left me. It was difficult to hear her voice. Silly me. My job as caregiver has sort of taken a back seat while these porfessionals do there thing. I will be needed soon enough. There have been small things I can and have been doing to help here however. As always thanks for the thoughts and prayers. I hope everyone is doing well. That's all for now, Bob