Katy post sct

Love, love, love this Judith.

Lets look for you all to have an amazing Christmas this year round.

((hugs)) to everyone and have a wonderful Christmas and a Healthy New Year xx

Judith, this is just lovely! 
thank you for sharing.

hugs xxx

Your post has made me smile from ear to ear! Merry Christmas.. 

Thank you so much for sharing my 25 year old son is due a SCT February 

Hi 

Katy was 30 when she was diagnosed and she had her SCT within 5 months as they weren’t going to mess around, so she was 30 when she had the SCT. She was diagnosed randomly before she started showing symptoms so she was fairly well going into the SCT so definitely age is on your sons side.  It is hard as a parent as well as you see your ‘baby’ going through the most horrendous treatment- trying to be supportive then going home and crying for days- but he will get through it and life will get back to normal- never the same but as Katy’s consultant said you want to get your life back on track to continue with your life. 
Have a good Christmas and I hope all goes well in February. Is it an auto or an allo? 

Hi 

It will be an allo. Our daughter is a match.  Can't believe a visit to A & E in August 4 weeks after graduating from uni would turn our lives upside down. 

Nicholas is in remission after phase 1 and 2 but was due transplant 12 December but his MDR levels weren't quite low enough. He is now on a new drug which is being administered via a back pack continuously for 4 weeks to hopefully bring levels right down. It's a new drug called Blinatumomab. Been available in UK for 6 months only 3 hospitals do it Kings hospital London, (Nicholas was there for 4 weeks end of August) ...UCL London  and UHW Cardiff (where we are). Only 30 people in the UK have had it 7 went on to be cured it re educates the cells, rest of people went on to transplant. It's been out in America longer though...it costs £50,000 for a month!.. 

Looks like transplant will be start of February as consultant still wants it done. 

Journey I never thought i would be on. 

I friend requested you on here Katys mum. Hope that's okay. 

Hope your all doing okay. 

Hayley 

Hi Hayley,

friend request is good. Our older daughter was also Katy’s donor, 100% match so it was strange having them in 2 different hospitals in Glasgow as lisa( donor) ended up staying in as they couldn’t get a good enough vein the first day to collect enough and she had to have a cannula inserted into her groin so had to stay 2 nights- I remember really panicking and almost having a meltdown when they said they couldn’t get enough on day 1 as I thought because Katy had already had her total body radiation etc and her immune system wiped out I was thinking she was going to die as she wouldn’t have the cells but they just gave her theoover 2 days so panic over- I’m a nurse by the way but it all goes out of the window when your own family is involved. ! 
But the nurses and doctors do know what they are doing, they explained everything and after Katy had the transplant they were virtually spot on with what would happen, day 10 I think neutrophils started going up, day 15 discharged. If you want to chat at any time during the transplant, just message me and I’ll give you my mobile number. 
I found this site and everyone on it invaluable as everyone on here has gone through it or has someone they’ve supported going through it because until you go through it you can sympathise but you can’t really help and we found people were almost afraid to ask about Katy so it’s quite lonely at times- luckily our son in law was given unlimited time off work so he stayed at the hospital with Katy. She said she can’t really remember a lot of the time, which is probably just as well. 
but we’re all good now, looking forward to Christmas. 
judith

Hi Hayley and Judith,

yes, the patient really remembers little, just ‘highlights’ really, it’s us carers who remember more. 

But as Judith says, transplant teams in the bigger hospitals really know what they are doing and the staff are really dedicated and will help all they can.

Hugs xxx

Hayley - some great support coming your way from Judith and Moomy.

It is very true, I have no real memories of my two times in the SCT unit and even now, 4 years on, I find out stuff from my wife that I have no idea happened.

As Judith says, this is a good place to post your thoughts as most likely one of the group members will have been in that position.

I am never surprised at the cost of some of the drugs and my consultant once told me that an Allo from the point of the initial referral....... through all that goes on until you get referred back to your Haematologist or GP can be at least £200,000 and that’s without any complications........ but everyone who goes on the SCT Magical Mystery Tour is worth every penny ((hugs))

About that cost, daughter is writing her book (!) and wanted to include the costs of the treatments she’s been through so asked some of her doctors if they could help her work it out; it will surely run into the millions because of her long illness (and it’s still going on, she had immunoglobulins only today) 

hugs xxx