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Auds21
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Thank you, Michelle. I am very proud of all my kids . I feel as if I’m living under a big dark cloud but seeing my daughter get stronger is keeping me going. A day trip on the Flying Scotsman sounds fabulous . I’m sure it will be a great day and will give you lots of wonderful memories . I hope that you are resting your…
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Dave I am so happy to hear that your consultant is trying to arrange rituximab treatment ( although not sure what that is ) . I really hope that you get it and it helps with your legs and mobility. I think that anyone going through what you have all been and are going through , would have some psychological issues . You…
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Hello everyone Helen and Dave, I am so sorry that you are both struggling so much with the symptoms of gvhd. I think you are amazingly brave to recognise that the rehab will help you at a time when you need additional support to help you through this phase of the illness. We are all here for you . Dave, you too are going…
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Hello Everyone im so pleased that your ecp went well, Helen and that it’s given you a boost. Good that you’re booked in again. You are doing so well, going to your gymnastic class and being proactive in trying to help your wounds . Im sorry that you are having bother with your eyes and such pain in your legs, Michelle. I…
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Hello All Helen , I am so pleased that you are getting your ecp on Monday and Tuesday and I will be thinking about you and sending lots of positive wishes. I hope that everyone has had a reasonable weekend. Michelle, I hope that you had a quiet restful weekend after your busy catch up and Dave, I’m thinking about you and…
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Hello everyone . I’m so sorry that you’re all having such a tough time but I’m in awe of you all - talking about how you feel and being so supportive to each other ( including myself) . Helen, I really hope that they listen to you and will continue with the ecp. Keep at them until they see it from your side of the picture.…
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Hi everyone I am so sorry that you are all suffering with your eyes. The gvhd symptoms are so debilitating and I think you all do so well to get up each morning and keep moving forward. Helen, I hope that your ecp treatment goes ahead next Tuesday and thaT your skin and eyes calm down soon. Michelle, I’m sorry that you too…
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Thank you so much, Michelle. I’m sending a big hug to you and Helen and Dave xx
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Hello my friends Thank you for all your kind messages and support. I have just heard, and wanted you to know , that my daughters second biopsy results have come back and they are clear. I’m on cloud nine! I’m so so relieved that I want to cry. I really hope that you are all having a better week, Helen and Dave with your…
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Thank you both so much for caring about us. We will both fight this illness. i hope that you are both having a good weekend and enjoyed todays sunshine xx
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Thank you Helen. my daughter had a second biopsy yesterday. They’re planning on tapering her off the immune suppressants but will wait until the result of this second biopsy. i do feel so desolate but must remain hopeful. I lost my son last August and I can’t lose my daughter . my Daughter is amazingly strong and will…
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Hello Everyone and thank you for all your kind wishes for my daughter. She has already had a second SCT . I am so hoping that next week’s biopsy comes back negative . She has gone through so much and needs a break. The initial biopsy was alright but it’s the deep one that has shown something up. we had my sons internment…
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Hi Everyone You are all having so much to contend with and I think it’s amazing how despite what tug are going through individually, you all take the time and compassion to think about others. I can imagine how frustrating it is for you all to have to go at a much slower pace and not be able to do the things that you did…
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Hi Michelle Glad to hear that you are enjoying time with the grandkids. They really are a lovely distraction and hopefully the weather is moving in the right direction now for us to be all outside. I’m going to be kept busy with the wee ones during the holidays. Helps me to focus on things other than worry and grief.…
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Hi everyone . I have been thinking about you all and hope that the gvhd has improved a bit, Helen and Dave . I also hope that Michelle , you have been keeping as well as possible my daughter is back in hospital again. Fourth time since she was discharged in December . Her lungs are still causing problems so a bronchoscopy…
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Hi everyone Thanks so much for all telling about your “ food” journey. It is reassuring to know that the problems with eating and food seems to be part of the recovery journey. Michelle my daughter is similar to you in that she seems to be craving sweet things and she didn’t have a sweet tooth before the second transplant!…
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Hi All It’s so good to hear from you all and the support that you give to each other and to me is wonderful. you all suffer from such a hard, debilitating illness and yet your strength and personalities shine through. Although it’s my daughter and not me who is suffering from this illness, I feel as if you are all my…
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Hi Michelle, Helen, Dave and Jan3 im sorry that I haven’t been here for a while . You have all been and are going through so much but how I admire your resilience and strength to get up and function every day. Dave, although you feel despondent that you are “ doing little”, believe me, you are doing amazingly well to get…
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I am so sorry fir your loss, Pauline. Xx
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Hi Michelle Thanks for your reply. I think everyone who has gone through a transplant is so brave and strong. The journey after the transplant is still such a roller coaster for many. I know this as my daughter had been back in hospital twice since Christmas. However, like everyone, she finds the strength to keep going. I…
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Hi Michelle i just want you to know that I’m thinking about you. I know ( from my daughter) that it’s a long, hard journey but I also know the strength that you all have, to have got through the transplants and get up every day and keep going. Please be as kind to yourself as you would be to others. sending love Audrey
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Hi Michelle, Im just checking in and hope that you are feeling a bit better and that with spring round the corner that you will manage to get out and enjoy the fresh air. my daughter is doing quite well at the moment. She is a bit frustrated at the limitations that goes with the illness and is quite fatigued. But she’s at…
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Hi Helen and Dave . I’m very sorry that you are both having such problems with your eyes . Try to stay strong . I’m sure that your medical team will do everything possible to help you and I really hope that things improve soon. Think about you a lot. Audrey xx
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Great news Adelaie. Your daughters journey sounds very similar to mine. my daughter was so weak by the time she hit home after 5 months in hospital. She has been back in hospital twice with infections but is making good progress at the moment. I would like her to put on a bit of weight as she’s terribly thin but hopefully…
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My daughter had a virus in her bladder ( BK ) for weeks . It was a challenging time but it did pass. I hope that hearing this helps and I hope your daughter begins to feel a bit better soon. Audrey
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Hi Michelle and Helen i am so sorry that you are both going through so much just now . Michelle, you sound quite similar to my daughter with the chest infection , x ray etc You are both such warriors and it’s definitely one day at a time. Unfortunately my daughter is back in hospital . She spiked a temperature having been…
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Hi Helen. Thank you for your reply and the recipe. It sounds super quick, easy and tasty! I’m so pleased to hear that you had some good spells over the weekend. Hang o to all the good moments and they will het more as time goes on. xx
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Hi everyone im just checking in to hear how you are all doing. I really hope that things are going a bit better for you. my daughter is managing to stay “ stable” at the moment. She’s still very thin but making a good attempt at eating. It’s lovely to see her with her family although I know that she is very fatigued and…
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Hello Helen I am so sorry that you are suffering so much with your eyes just now as well as your mouth and legs. . This must be so hard for you but I know that you will get through it as you have done with the gvhd in your bowel, lung and liver. I am glad that you can tell us about the way you are feeling because it helps…
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Hello Helen I just want to say how pleased I am to hear that the gvhd has began to improve . I know you went through a low time over the Christmas period and so this is very good news . Adelaide, I would second what Tony has just said. Your daughter is in very early days of recovery and I think it is a hard road for…