Feeling nervous about 25 year old sons upcoming stem cell transplant

  • 31 replies
  • 14 subscribers
  • 21066 views

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. 

  • Yes, Katy went to a different hospital for her radiation treatment, twice a day, she Went in a taxi with a nurse- it was to the same hospital that my other daughter who was the donor as well- and LiJoy ended up staying in as they couldn’t find a vein so she had to have a line in her groin- typically Lisa- nothing is ever straight forward with herJoy

    but on Katy’s last day of radiation they allowed Lisa to go and find her and it was an emotional moment as Katy got her first lot of cells while Lisa was donating her second lot! 
    I would say day +2 Katy started with the musositis etc- so tell your son to use the mouth wash religiously- then until the cells engraftment around day +10 was the worst but everyone is different. 
    you will feel exhausted but you will keep going as that’s what we do but it is hard. But Nicholas will get through it and this time next year he’ll be wondering what all the fuss was about x

    KT’s mum 

  • Aw you have brought tears to my eyes. I can imagine it was emotional for them both.  That's bit I know I will struggle with seeing chloe attached to machine .  As you know the both are involved  in this procedure. 

    She is starting the gcsf injections tomorrow morning. Bit worried as she still has a cold from.last week!. Yes someone said about the musositus can be tough. 

    I assume chloe will donate twice if not enough collected.  She is doing her bit 13th Feb

    Hayley 

    Hayley 
  • Hi Hayley, 

    it’s not well known here in the UK but widely used in the USA; they say before G-CSF starts, get her to take a daily Claritin (brand name Loratidine) as it really does seem to help prevent too much bone pain which can occur as the bone marrow works hard. 
    hugs xxx

    Moomy

  • Hi mommy

    Ah that's a shame we have that here Clarityn in the cupboard. It's nicholas! 

    Injections start in korminb 

    Hayley x

    Hayley 
  • But do start it anyway, Hayley, it will still help...

    hugs xxx

    Moomy

  • Will  do. Thank you Moomy.

    Hayley 
  • Moomy

    I have no idea what the word above means  ...korminb...tomorrow I typed lol

    Hayley 
  • Good morning Hayley. we stay in Inverness but my mum and brother stay just north of Aberdeen so we went over fir a few days.

    I have said that my brother was my donor....... what I did not tell you was at the very start we had no idea how this all worked and thought it would not take a lot of stem cells to do this so I promised him £1 for every cell he gave....!!!!!

    He was just home from the weekend from his very large boat he now has in the South of France Joy

    I will be eternally great full that he saved my life twice.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Mike 

    That is so funny about £1 per cell. 

    Yes chloe is already blackmailing nicholas. Domino every Saturday. 

    Here now for her gcsf injections..I didn't realise they would be 3 a day!!

    This time next week she will have donated and nicholas will have received. 

    Just want it over for both my children 

    Thank you for the support 

    Hayley 
  • Hahaha, I knew you meant tomorrow, Hayley!

    yes I totally get it, you truly DO want it done and dusted; sadly it will take a while.

    But your two will get there I’m sure. Patience is VERY hard to use when it’s your children but you need to be there for them both of course! 

    Hugs xxx

    Moomy