Our son is having his stem cell transplant on 14th February. Our daughter is the donor. We are glad that his MRD levels are now low enough.
He is looking and feeling so well. All bloods stable after a month on a relatively new drug Blinutab (spelling maybe off there) to get the levels down. It's going to be a shock to our system seeing him go backwards again.
Hi Hayley,
Nicholas will lose his hair as the conditioning for The SCT is pretty severe, Katy kept her hair right through her chemotherapy after she was initially diagnosed, and her leukaemia was the same-ALL B cell Philadelphia negative- but the TBI and conditioning treatment she was told she would lose it so shaved it before she went in, then lost even her eyebrows! But it’s all grown back now.
It is very hard on the family but I think you will find once Nicholas has the transplant being young and fit , he will hopefully recover very quickly- it’s 16 months since Katy’s and it’s almost like it happened to someone else, but at the time you think you will never be happy again- I was lucky I had decided to become self employed a few months before Katy was diagnosed as we ended up nearly full time babysitters for her baby when she was in hospital as her husband stayed with her, so trying to keep life as normal as possible helps I think as well. I’m a nurse so I’m never surprised at what life throws at people, however I do believe that it makes you stronger as a person and as a family, we are lucky, we’re a very close family and this made us stronger and we appreciate each other .
I wouldn’t say I am religious, and I must admit I had a few good old rants at ‘ the man upstairs’ especially as a couple of my African friends are great believers and kept telling me god would look ater us- you can imagine the response 
, but I believe we had a guardian angel in my dad who had just died a few months before- we kept finding white feathers all around us- so I found comfort in that- but here is a poem that I found 
helped me through it ( a bit soppy and it still brings a tear to my eye ) but I hope it gives you and your family strength over the next few weeks. Xx
KT’s mum
Hi KT's mum
So glad that Katy is doing well and getting her life back on track ...you don't realise how much that inspires me. I showed my husband the photo you put up it is so encouraging. I must remember to show nicholas if I can find it!!
Thank you for the lovely poem. I believe my mother is my guardian angel I have had a lot of signs. Her favourite song was somewhere over the rainbow....the amount of times I have heard that song when having a down time is incredible. I know that sounds mad!....but it gives me strength.
No going back now ...is there...I feel sad that the immune system/cells he was born with that haven't given him any ill health until August will now be obliterated...the silly things I think about 
Never thought in a million years I would be going through this I guess we all think it.
We had upsetting news last weekend. Nicholas met up with Alice his girlfriend in London (she was visiting her mam after xmas) she spends a lot of time in Wales staying with us. Her mother got the all clear October from lung cancer....but 2 weeks ago felt tingly down one side...whilst on a beach ...tests revealed it has mestatised with 2 small lesions in the brain and slight shadow on lung. They will do targeted radiotherapy on the brain. Poor, poor Alice at 22 her life hasn't started. Last June nicholas was driving her mother to appointments in London in between uni. Then they graduated mid July then 4 weeks later he had this !!!!... I will be there for Alice as she has been there for nicholas. 2 young people who should be out starting their careers/enjoying life. Makes me angry and in a awful way jealous seeing other people with kids their age enjoying themselves...oh God that sounds like I am a horrid person, perhaps I am.
Thank you for your support
Hayley
Hayley, your are certainly not a horrid person...... you are all on an unwanted journey that on many levels you can’t control.
Your emotions are on a knife edge but once a clear plan is in place and you all get well into the process some measure of control will slowly develop.
Sorry to hear about Alices’s mum - cancer is so indiscriminate. Remember there are other areas in the Community where Alice or even yourself can conduct in with your understand what her mum will go through.
I remember when Katy first cane onto the site and how she was able to Hager to grips with everything that was going to happen and did happen.
Keep looking forward the good in this as SCT is very effective ((hugs))
Hi Hayley,
no you certainly aren’t a horrid person- I have a friend who’s husband ( hopefully soon to be ex) beat her up, he uses the kids as emotional blackmail, he’s a drug addict and yet he’s still here- I don’t know the swear words I used when Katy was Ill and she would tell me about his latest escapades- and I used to say I wished he would get ill instead of Katy so don’t worry you’re sounding quite nice compared to me cos I’m a nurse ! - if you met me I’m nearly 60, professional, and quite quiet- but when it comes to your own family OMG I would kill for them and my son especially would say blimey Mam I didn’t know you knew language like that ( he’s a farmer and every other word begins with f)
judith
KT’s mum
Hi moomy,
yea I did- I actually thought I was messaging Hayley on the private messages actually but one of the admin pointed it out so I removed it .
thanks
judith
KT’s mum
