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My eldest daughter has aml
She was diagnosed april 22.O feel so lonley and useless as i cannot help her She had a stem cell transplant on new years eve.. She is so ill and doesnt seem to be picking up...I never imagined for a moment she would have to go through all this.It is horrendous. I Cannot visit as she is isolated.Icannot eat or sleep for worrying about what the outcome could be she is only 37 years old.
Comments
Hi Adelaie,
Just to introduce myself. I am Liam, the Patients and Families manager at Anthony Nolan. Thank you for joining the forum and reaching out to the community though posting here This is predominantly a peer support platform, but I wanted to share some of the resources we offer; firstly our our telephone emotional support service, available to both patients and family members Which offers up to six telephone sessions with a professional who has an understanding of stem cell transplants. This might feel appropriate to you at the moment?
Find out more about our Telephone Emotional Support Service on our website: www.anthonynolan.org/tess
Alternatively, you can call our helpline on 0303 303 0303 or email us: [email protected] as well, for any information or signposting for other support, we are here to help.
I'm wishing your daughter well, and thinking of you during this difficult situation.
Liam
Hello Adelaie
Check out the thread:
2nd Transplant and my daughter is so ill
We've shared on it for a while and you might find comfort there just scrolling through.
We are with you in your terrible time. We can appreciate you and your daughter's situation too well. Even if we're not writing, we send our kindest wishes and compassion.
Helen
Hi Adelaie
Has your daughter received any results yet to confirm the stem cell transplant has worked? You mentioned in a post that she'll find out soon.
I hope so, and then she can focus on coping with her symptoms.
Sending a big hug
Helen
Should find out if it is successful in the next week or so..
Hello Adelaie
i am so sorry that your daughter is so ill and also that you are going through so much worry. I can empathise so much with you as my daughter had a second stem cell transplant at the end of July. She was admitted, very ill with pneumonia and has had a very rough ride. There were times when we really thought we were going to lose her . However, I had every faith in her medical team and knew that they would do everything possible to help my daughter. She turned 40 two days before her transplant so she’s not too much older than your daughter. She was in hospital for 5 months.
I was like you and found eating and sleeping very hard. This group has been my salvation. Everyone is so kind and supportive and will encourage you when you need it the most.
it must be very hard not being able to see your daughter. I was allowed to visit only because my son was killed in a road accident and they let me visit on compassionate grounds . It was very hard trying to be positive and cheerful with my very ill daughter when I was grieving so much for my son. But I did it because she needed a strong mum when she was at her most vulnerable .
Your daughter will know how worried you are and will fight to get through this challenging illness. The treatment is harsh but necessary. The medics know what they are doing and will fight tooth and nail to get your daughter through this.
im here if I can be if any help to you. I’ve certainly had lots of help and support myself from wonderful people on this site.
Best Wishes
Audrey
Thankyou for your kind words.Im so sorry you have had such a tough time....sorry for your loss.I am finding this group comforting .Is your daughter ok now **** I have every faith in st james Leeds to get my beautiful girl through this.I know it is harsh treatment but has to be done.She has had severe muccalitus and a terrible tear in her throat and obviously various other harsh symptoms. I struggle to understand why this is happening to a perfectly healthy beautiful and happy girl .
Hello Audrey, hello Adelaie,
I'm struggling myself with chronic gvhd over 18 months after sct.
I'm also a mum of two wonderful adult children. I can't begin to understand what you are going through. I can only send you two my compassion, kind thoughts and love. You are really doing such a good job, I can't start to imagine.
Deepest sympathy for your devastating loss Audrey. Remember we're here for you. You are in my heart.
Helen
So sorry to hear this.... so glad i joined this group.So many nice people with kind words ....
Hi Adelaide,
Having a bone marrow transplant or a stem cell transplant is a very rough time for patient and also family. Unfortunately mucousitus is one of the most awful parts having gone through it myself, it is part of the chemotherapy pre conditioning to kill all the fast mutating cells in your body that could be cancer and to ensure your immune system is killed in your. Ody before giving you a new immune system. Unfortunately it always hits vey hard everything from your mouth to your back end. You usually bring up blood from your mouth and end up with liquid stools. You then don’t want to eat for a while and have absolutely no appetite and many go onto liquid feeding tubes. You at this time lose a lot of weight and I am afraid to say it does take a fairly long time to recover after this process, but you have to be patient and take one day at a time. It will take some time to repair all the damage from the pre conditioning chemo, repair to ehat the mucousitus has caused and the new immune system which will take a very long time to rebuild. It is a long road and I am sure she will get there with her family behind her. You just need to be patient with her recovery, as she will want to get there but will have to do it at her pace and recovery speed of her body. You will probably find when she does start to eat she will be a very fussy eater and hardly eat anything and she will be like this for a long time. It is normal. It is amazing what medicine can do these days and how the body can repair itself over time. Good luck to your daughter and hope she is not in hospital too long, and on the other hand you don’t want her coming out too soon otherwise she could end up back on again with an infection or something. So again patience is the word and baby steps is another reference used by doctors.
Thanks Dave, your calming sensible words are much appreciated. It puts things in perspective.
My sct was 17 months ago. I'm still on jakavi 10mg 2x a day, and two other immune suppressants as well as lots of other things, but I feel at last, that my body might be getting somewhere. At last , I can eat. It's really new for me. It's amazing. I'm very picky but I can eat, really eat. It took all that time and all those treatments. The chronic gvhd has now moved to my eyes, maybe that'll take a while too, but I've got through grade 4 gut and bowel and lungs, so i can get through the eyes. Patience.
Helen
Hi Helen.
so good to hear some progress on the gvhd front it seems rare as we normally have 1 step forward and 4 steps back. I am so happy your gut symptoms have got better. You can eat!! Did it happen suddenly or get better over time? Do you think Ecp helped? I still have appetite issues 19 months out that I still feel a lot of the time I do not want to eat but have to force myself. Quantity is still an issue, but I hope this will improve as time goes on for both of us. My range of food I can tolerate has slowly improved over time. I have just had my 2 days of Ecp and am absolutely shattered even though I have had lots of sleep. However my fatigue levels always seem to be so high. I also feel like my legs are tighter and can hardly walk .I just hope this improves. My body was always very good about sorting health issues in the past but after sct and getting gvhd I seem not to be making any progress. Let us hope your eyes and ankles are next to be rectified.
Hello Dave,
Great that you've got ecp. It took a few months for me to feel benefits. At the beginning I felt worse with it. Low mood, extreme fatigue. But I can feel the improvements.
My eyes are getting worse unfortunately. They now have burning sensation, painful.
I think my Appetite improved because of painkiller Pregabalin, and ecp.
Best of luck with ecp. Be kind to yourself.
Helen
Adelaie,
Your feelings are entirely understandable and not being able to visit must make it so much harder.
Obviously everyone's experiences are different, but I just want to reassure you that it is still very soon after her transplant and the recovery does take time. I had a transplant for ALL in Oct 2015 when I was 39 and there were some real low points in the few months after that but eventually and slowly I recovered. Now I look back and can't believe it was 7.5 years ago.
I hope your daughter is improving and best wishes for her recovery.
Tony
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 everyone going through this ( and their loved ones ). Your daughter knows that you are there for her and that’s the important thing just now. With your help, I’m sure that she will turn the corner eventually. It’s a very roller coaster journey.
Im sure that all these wonderful people here, who have gone through their own rocky journey, will be if great help and support, just as they have been to me.
Best Wishes
Audrey
Thankyou so much .... it really has made me understand more.... My girl seems a little better today like you said baby steps and a loving family behind her on her road
Finally after 6 week my daughter is allowed home...... They have said that she is doing ok or obviously they wouldnt be allowing her home She still has a tough journey.in front of her and we still have to wait to see if the transplant has been successful..But it is a step in the right direction .........
Hi Adelaie,
I am so happy for you and your daughter. She must be doing well. Still early days as you state and her immune system needs to rebuild itself. So best keep away from colds, coughs, pets is always best as well if she can, this will save infections and going back into hospital. Eating for her will also be a challenge. At first it is good for her to get anything down whether healthy or not. I started off with pot noodle and pasties and to this day I still eat them as my gut is still no quite correct yet. Takes a very long time sometimes. Anyway I wish her all the best for as prompt a recovery as possible. Patience is key here as is baby steps.
Thankyou so much ..for your kind words.. i will try get a sleep tonight knowing she is home and in her own bed to re charge x
My daughter has been home since mo day but was admitted again with a water infection then released again.She seems really miserable said it is getting her down... She said today it feels no better but is going into hospital for blood tests today so hopefully she will mention it to the consultant..She is eating a little better though
Hi adelaie,
Definately good news you have noticed your daughter eating a little better, this will hopefully pick her mood up, also energy levels and hopefully health. As they say you are what you eat. The more fresh items the better, but don’t push anything too hard at the moment as I expect her stomach is still fragile. Hopefully today maybe some good results from blood tests will also help a little. It is all a very slow long process and will take time. A nice walk outdoors if she can maybe nice giving room to think and help re order your daughters life. All sorts of things will be running through your daughters life, re-assessing the values in life, the purpose etc. can I ask did your daughter have a bone marrow transplant from another person or did she previously have her own cells harvested and re drip fed back into her? I ask this as if she had someone else’s cells she may very likely in another few months get gvhd which unfortunately is another trial in itself. Again with cancer and related health issues you need lots of patience as all processes are very slow and she has been through so much already. There will be lots of down days and a few more positive when she feels like she is making progress, but the low days will be more prevent especially at the start. She is lucky to have such a caring, strong mother around.
Thankyou so much for your kind words A lady in america kindly donated to my daughter...I do think she is doing well being let out of hospital so early.Although i dont think she is seeing it that way at the moment.The hospital is meant to be offering her some counselling as i think sge needs it but nothing has happened as yet..
Hi Adelaie,
your daughter is lucky being home so early. I was let home after a month but infection risks are a priority. Your daughter has her old immune system wiped out and now has a new immune system, more new than a young child. Any cold or infection can put her back in hospital if not careful. To start she really needs to keep shielding as much as possible as the immune system starts to grow. She doesn’t really need her body fighting infections when it could be strengthening her body and immune system. I still wear a mask nearly 2 years out of my stem cell transplant as it is still early days. I am also on imnosuppresants for the gvhd I have. As your daughter had donated cells it is quite likely she will get some form of gvhd later but maybe not worry her with that at the moment. Not everyone gets gvhd so she may be lucky, Gvhd unfortunately is not nice and many consider it worse than having the cancer. Mine started 6 months approximately 6 months after my Bmt or sct when I was off immunosuppressants and I had my first covid jab and flu jab. This started off an immune response which was good but then gvhd flared and was unable to swallow, had no saliva, got ulcers in mouth, pains in stomach, and skin tightened on my legs. With time a lot of symptoms went and with medication. I am not telling you this to worry you but to prepare you for what may come. I hope she does not get strong symptoms of gvhd but they say mild symptoms are good. Anyway hopefully god news from blood tests at hospital today, and good news she is still home.
Thankyou so much xx
Its like a roller coaster my girl has being admitted today with a virus in her bladder.They are saying she could be in a month.Shes very disheartened.....
Hi Adelaie,
I am sorry to hear this. It is not the best news for you or her. You have to look on the best side they have antibiotics to deal with this. As her immune system has only just started rebuilding itself it may not be strong enough to fight infections off, at least they have the right tools in hospital to deal with it. Many persons after transplant can spend many months in hospital. It is a very risky time for her her with infections so she is in best place for now even though it is the last place she or you want her to be. Myself and Helen are 2 years out more or less and is still quite risky for us. It does get better as it goes on but it is a long old lonely ride you want to get off but we have to be very patient and safe unless we want further issues. Again I am so sorry, my heart goes out to you both and I understand how upsetting and depressing it is. She will get there.
Yes she was in a lot of pain yesterday and i.know she is in the best place to be treated properly...Im sure all will come good for my beautiful girl eventually.Like you say its a long rocky road and small steps x
Hi Adelaie, hi Dave, hello All who might be around,
This is a terribly difficult time for your daughter and you, it's completely ok that she's down and the fact she can share it with her mum is the best compliment for your relationship. My hubby gets sad that I put up a front for friends but not for him. Difficult but understandable.
You're doing so well Adelaie and your daughter is too. In the face of these terribly challenges there are blessings which I know you both value.
I myself am not doing so well at the moment. My eyes are so bad that I'm afraid I won't be able to write or read here in the app much longer, but I'm holding on to a hope that it's a phase. I have cortisone eyedrops and cream, jakavi 2x 10mg per day, cotrim, Pregabalin painkillers. I'm hoping I can get scleral lenses made from my own blood serum for my eyes. My mouth is dryer, my sclerosis on my legs is getting worse which makes shoes a nightmare and mobility very challenging. Sorry to lay this all out here. I guess I'm doing it cos I'm trying to come to terms with it. It feels more challenging with the eyes.
On a brighter note, I've got through 4th degree bowel gvhd, lung and liver gvhd, and I'll get through this with my eyes. But keeping my eyes closed for most of the day with pain is new for me.
Adelaie, your daughter is in good medical hands and this too is a phase. It will change on this tortuous journey and she'll see it through, the hero that she so clearly is, with the support of her hero mum and fantastic children, youll be amazed by them.
I hope I haven't shared too much or been insensitive to anyone.
Much love and positive energy to you, Believe it or not you all really help me. You understand and are strong. Yesterday when I was really flagging I even had a little imaginary conversation with you all and you really helped and supported me and made me feel stronger. I hope you understand and don't think I've cracked. I'm quite sane:)
We're heros.
Thank you,
Helen
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 me to understand some if the emotions that my daughter is going through and also I hope that it helps you to share with us.
Adelaie, I am so sorry that your daughter is back in hospital. after my daughter had her second transplant, she was in hospital for 5 months with pneumonia , then BK virus ( bladder ) , then bowel gvhd ( we think) . Each was very challenging to treat and my daughter ‘s mood got very low at times which was hard to see as she had up to this point, remained so strong in spirit.
However, the medical staff quietly worked away at each medical problem that arose and eventually she got home. She was very weak and dreadfully thin. Since being at home, her mood is a lot better. She ended up back in hospital for a week just after Christmas. I think they expect this at the early stage of recovery.
Like yourself, as a mother, I worry all the time but try not to let my daughter see this. It’s a long, hard journey. The strong, brave people in this site are testament to how even with many setbacks , they rally forth and are making progress in their recovery.
This site has helped me through many very anxious times and I’m grateful to everyone who shares their story with us.
I hope to hear that your daughter gets home again soon.
Audrey xx
Thankyou.She is still in hospital with a virus in her bladder theyve had to administrate a catheter....its being a week and not much improvement.Somedays i dont even hear from her as she is feeling very low...
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