[JaneP]

Carrie,

I am so sorry to hear about the loss of your Dad. He followed shortly after my brother. I am sure they are in heaven looking down on us today. I too know how peaceful that day was.

I pray for you and your family in this time of loss.

JaneP

[JaneP]

Well, it is Sunday, August 14th and my brother was admitted back into the hospital again. He had gained 14 pounds in 4 days…all fluid. They sent him home on Friday and told him to take his lasix. Yesterday he was real bad with the fever back to 103 and just tired and listless. They have checked his lungs today and appear to be okay. He is just not getting the fluid off as quickly as they would like. Now just pray his kidneys will be okay. He went through this about a month ago. He is on oxygen, and said it takes everything out of him to just sit up in bed.

I am praying for all of you.

Jane

[JaneP]

Doreen,

I will be thinking of you, and wish you the very best. A new beginning is just around the corner. Think of all the wonderful things you want to do when you get this over with.

Keep us posted on how you are. Get plenty of rest, and think sunshine.

PS) Don’t do what my brother did after his first SCT. He made a makeshift clothes line in his room and hung his clothes across his room. He even put a sign on door entering the Unit saying that his was in Rm. # and was being held captive. He kept the nurses rolling on the floor all of the time. He told them that if they remembered they had told him to make himself at home, and that was what he was doing. Such a ham..So positive thinking is good.

Jane

[JaneP]

Lola,

Glad to hear things are going good for you. Not an old lady. Life begins at what 80 right ladies.

I wish you well, and hope you continue to fill stronger every day.

Take care, get plenty of rest, and get that appetite back.

Jane

[JaneP]

Carrie,

Happy Anniversary to your parents. Hope your Dad continues to do well.

Good luck to your husband as well, and I know you are excited about going home. It is hard when you live away from family.

Jane

[JaneP]

New news…My brother went to MCV today, and as soon as they find a donor for the stem cell he will be a part of a new study. Probably not spelled correctly, but I will try. None myeloblativello genecie hemotopoietic cell transplant. Afterwards he will be on (excuse spelling) taxalo??? and methotrexac (spelling) plus the usual growth hormone. They do not want to use his frozen stem cells. They did a lot of blood work today and will try to match my sisters and I to him based on today not 8 years ago. I am praying that we will be a match now. He will be one month in the hospital, 2 months after he has to be 30 minutes or less from hospital and then remaining 9 months close to home and cannot do anything. He cannot have any fresh fruits or vegetables from this forward (due to low wbc)

Now, I just have to work on finding a place for he and his wife to live for those 2 months since they live over an hour from the hospital.

I will keep you all updated.

Jane

[JaneP]

Carrie,

I wish for a miracle every day. He went home today still running a fever, but he has to go to MCV to discuss transplant. They want him back in the hospital as soon as he gets back. His temp is running 101-103 and is not going down. Has been on antibiotics for over a week.

I wish and pray for the best for you Dad and family too.

Jane

[JaneP]

Danz,

My brother was out of the hospital after the first SCT in 10 days. He did fine. Had radiation and then returned to work and had been working for 8 years. No health problems until this came up suddenly in March. They had tried to get him to go on disability when they found the cancer. In a way, I think they want you to retire and enjoy your life, because it is all so unpredictable if you know what I mean.

I truly wish the best for you, and pray for you and your family.

Jane

[JaneP]

Thanks Sandy,

I wish you and Mike the best as well. It is so nice to have this forum available to speak to others. What were our lives like before the computer.

Bless you!
Jane

[JaneP]

Thank you Kathy. It is such a long roller coaster ride for us all, but most of all for my brother.

I am so sorry about your Mother too. I am sure that was a very difficult time. No matter how prepared we think we are, I don’t think we are really.

Jane

[JaneP]

Well, I just talked to my brother. They have admitted him again. His temp went from 103 all last week to 94 yesterday and then this morning it was back up to 102. He has neutropenia infection. They have been loading him up with platelets today (3) so far and are getting ready to give him more blood. I think they want to keep him in until Wednesday. That is when he will go to MCV about the transplant. He just told me that everything is making him sick. He did just eat some pudding. He has lost 65 lbs. since the end of March when he was first diagnosed. Will write more when I know more.

Jane

[JaneP]

Thanks Sarah. My brother meets with the new Dr. at another hospital this Wednesday. They want to do another SCT with his frozen stem cells from before. They tested my 2 sisters and myself for bone marrow match and I was the closest but not good enough they said. (4/7) He is at the hospital again today getting loaded down with platelets, and he has an infection in his blood so they are giving antibiotics today intravenously. He has been on antibiotics all last week as they thought he had a sinus infection. He told me this week that he didn’t think he was going to make it. I worked for the Dr. he has now, and he just told me prognois was not good. I am trying to keep him up with a positive attitude. He did so good last time after over 2 years of fighting. I know he has abnormal chromosomes, gets blood and platelets daily (2 units) and this has been going on since March. He finished his 4th round of Vidaza(daily for 7 days) with no change. He had a bleed in his eye and has not regained sight, and they have had to cauterize his nose for the bleeds. It takes hours to even get the blood prepared to give to him. He has had numerous blood clots and they have put screens in his lungs. He has hardly any immune system left now, and has to be real careful. I feel so guilty because I am not there this time. It was so much better when I worked in the cancer center and was able to be with him all of the time.
I wish you and Charlie the best, and will keep you in my prayers for a match.

Jane

[JaneP]

Don,

I am sorry to hear of your loss. Our prayers are with you..

JaneP

[JaneP]

Thanks Sandy. I have read all that I can on MDS because I was not even aware of it. I had worked with Oncologist not Hemotologists.

I have been reading the forum’s and tonight just needed to unload.

Thanks for the support and prayers.

[Author]

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