Hi,
As things are progressing towards a BMT (first appointment tomorrow, so think they have found a match for me). I am wondering if anyone knows of a support group for an older teenager? I have tried Macmillan & leukaemia care. Although they offer phone support, I was hoping to find someone for her who has had a parent with cml who has gone through a BMT ...bit of a long shot I know, who could offer support.
My daughter says I am so lucky to be in touch with someone who has been through a BMT (thank you so much Jo)! She says, if possible, she would like to find someone who has experienced a parent going through the same, to help her through. Of course we will help her as much as we can, but she may not want to share certain things with her parents, understandably!
Love & best to all,
Ali x
You are here
support for daughter
Dear Ali,
I understand totally what your daughter means. I only wish my own daughter had been able to find support when I had my SCT back in 2003. She really did suffer silently and found it very difficult to talk to anyone in our family- even her dad.
She did have a boyfriend who was very supportive- and she was doing her A levels at that time- but it is very difficult to really talk through fear of loss with anyone who has not experienced the same fear.
How old is she? Maybe one of the support nurses at Bristol would be able to suggest someone she could contact. There must be others who have had SCTs there who have also had children. Just a thought.
How is the interferon going- has it controlled your bcr/abl count?
Do you plan to have a full transplant- or a RIC (reduced intensity)? Please update us on how your consultation goes tomorrow.
Best as always,
Sandy