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
Morning all.my girl is finally home.The virus in her bladder has cleared up .Thanfully.She cried with releif when she got home.Not sure what the next steps are.They have just performed a biopsy so hopefully we will know a bit more soon..
Hi Adelaie. Michelleanne, Auds, dave steve,
Sorry, can’t read at the moment, eye gvhd.
You’re all with me thank you. They’ve put me back on myfortic.
Love to all,
Helen
Hi all,
I am the same vision very very blurry. Can hardly read. Occasional gritty bits in eye, luckily not too dry or painful. More blurry than anything. Otherwise not really any progress. Glad your daughter is home and hope she will strive onwards and upwards.
Hi Adelaie,
Great news that your daughter is home which I’m sure is a relief to you all. I’m sure being at home rather than in hospital will help her feel better and she can hopefully focus on recovery now.
I hope the biopsy doesn’t show up anything too dramatic and that her bladder is now OK.
All the best,
Steve
Morning everyone finally some good news .my daughters consultant rang yesterday to say my daughters biopsy results show she is free of leukemia… i.know shes by no.means outnof the woods as waiting for her bloods to go up and see if the transplant is a success… but its hope…
That is excellent news. I hope she continues to improve.
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 that will come in time .
Im so pleased for your daughter and yourself .
Audrey
Hello all, hello Adelaie,
Wonderful news, free from leukaemia, really lifted me to read it.
Yes, Dave, me too, things aee blurry but pain is controlled, Myfortic back doing its work, keeping me awake but thankfully keeping the gvhd at bay it seems.
Hopefully your daughter can get a bit of stability going for a while Adelaie, I wish it for her.
Best wishes to all,
Helen
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