[tamara669]

Hi, I thought I would write an update. My mom died from ACUTE GVHD June 19th 2013. As I mentioned before my mom had acute gvhd of the gut. She ended up going septic in June. The did manage to get the infections under control. Days leading up to that day were good days we actually thought she was getting better. After she went septic they did not think she would pull through but she did. 2 weeks after that they decide to end all treatment as the next infection would be worse. I look back at everything she went through and I wonder if it was worth the risk,or just a death sentence. I spent many of a night reading medical journals and all of the cases I read end with death and survival rate was very poor. They tried every drug you could think of, Including traculimus and campath. Campath was the only drug we saw improvement. But with campath the maximum a doses you can receive is 4. My mom had 4 shots.
The hardest part of this journey was watching her in pain. During this time she always seem to look at the bright side. Even the nurses at princess Margret Hospital were surprised how good her spirit was even after she was given only 2 weeks. she was transfered to a Hospice the 19th of June. During this time she was able to do all the things she wanted to do including seeing family friends and attend BBQ sometimes you wondered if she was sick. With the drugs out of her system her gut seem to settle down. That was a big surprise. But then the gvhd showed us what it can do. I invaded her mouth and stomach. The sores were horrendous her mouth was black and had barnical looking things growing inside. She gradually got weaker so she could no longer see vistors. 2 days before she died she called me and we talked for an hour. That would be the last time we would talk. The next day I got the call to come. She talking in the morning and told everyone how she was ready to leave us and how much she loved us. I never saw her awake. I arrived to late. She died 5:50am the following day. She was in no pain. Which I am grateful. I want people to know no matter how good the match is the risk is very real. My mom had the best possible match and it still rejected.

I wish she never had that transplant she was cancer free at the time of her death so it did work but at what cost ? She was given 2 years at the time of her transplant. I wish we still had that time. So please really think about the risks and ask about actual survival rate you maybe surprised by what you learn. I just feel it is important for others to read my mom's story.

With Kind Regards