Bitter Sweet meeting with my son?

Went to another hospital with my son and daughter in law to discuss the transplant plan for my son's AML. The Doctor was describing it all with utter compassion and in a way that was easily understood.

It is such a process that they have to have him as fit as they can but they have to flatten all that is needed to do this? With the past chemo treatments and the fact he has the kit gene, changes the results from him being low risk to high risk now! The UK donor who is a woman is a 10/10 match which is great news so puts the odds in a favourable way. However he then dropped the "BAD NEWS" His liver is a little messed up because of the Chemo so needs treatment to sort that out. If the transplant does not fix him within 12 months he will not have any chance of success and will be on palliative care.

I went with him yesterday for the Liver fix drip which was a bright florescent yellow! Within a few seconds he started to cough and was perspiring a little and said he felt dizzy but thought it may of been the coughing fit? He then said he had an urge to go to the loo urgently. His sweating went away and he started to rub his arms a little and rolled his sleeves up on his shirt to find spots that looked a lot like nettle stings on his arms. It was at the point a nurse came and he showed them. She looked at his back and stomach and they were there too! She called another nurse over and they put a plan in action by stopping the drip and giving him 3 drugs to counter the reaction into his permanent line in his chest. Before our very eyes we saw the spots lighten and pretty much disappear. After a 15 minute wait the reinstated the drip but at a lower rate and it all seemed to be going well except the strange tummy feeling my son had. They told us that the yellow drip was £2000+!

We are now waiting for a date which they hope will be mid January 2016 but he will be locked away for 7 weeks minimum on a specialist ward for transplants. They also have to give the ward 4 names as they will be the only ones allowed near him and anyone else will be able to talk by intercom only if the ward deem it fit to do so. They even have theatre wash rooms before you go in the room Which I fully understand.

I Wish the donor one of the greatest lives that she can have forever, for the chance that my son will have as near normal life he can.

Be Well

38 Replies

  • What a knife edge life you are leading. Roller coaster of hope and anxiety. But it does sound as if he is getting the best care.

    Love and hugs all round,

    And look after yourselves

    K xxxx

  • Thank you

  • Hello Offcut, my heart goes out to you both. What a sad & stressful time but there is hope , may it grow stronger. Love & healing thoughts to you. Love Margaret x

  • PMA always

  • Thanks for the update Offcut. Your poor son will really be going through it won't he? Fingers crossed that it works and he can have the transplant. At least he has the chance of life which he has to take. I, too, think the donar is a wonderful and very special person to do all this for a stranger. All the best and my thoughts are with you all x

  • I agree 100% I would love to shake her hand.

  • You might get the chance? It quite restores your faith in human nature doesn't it? x

  • Sure does. I was on the Anthony Nolan list when it first came out and I was not in the way I am now or to old. If they had anything of mine now they would have to weigh them down to stop them floating up to the ceiling. ;)

  • Yes and he is only 34 but we will be behind him all of the time.

  • Obviously your son had an allergic reaction to this drug. For the future obtain the name of the drugs ( ask the oncologist to write them down on a piece of paper) then check them out on the net beforehand.

    Now his allergy is known ALWAYS advise everyone who is caring for him about his allergic reaction.

    Never assume what medicine he is being given is OK. I had a few times when I caught the nurses giving me stuff that I had reacted to before and tell your son that he must immediately call a nurse should he feel ANY odd symptoms. They can come on extremely quickly.

    I refused to take anything that the Oncologist hadn't told me he was going to give me and had explained what it was for and what it would do.

    Damage to the liver caused by chemo is a common problem but it is quite a tough organ and is known to heal itself.. Drinking plenty of filtered water helps both it and the kidneys flush out of the body the toxic drugs he has to have.

    Unfortunately there will be a lot more nasty reactions ahead of him but the body can come out of the other side.

    Never give up and knowledge is the key.

    Best wishes to you all.

  • I have an allergy to Iodine which is great when I have my heart procedures or ct scan etc.

  • How very difficult for all of you Offcut and I truly hope that this works for your dear son. Focus on the good news and lots of love to you all. xxxx

  • PMA always, with the occasional tear thrown in.

  • Oh my goodness - how dreadful for you. It must have been so scary seeing him reacting to the drugs so rapidly and then such a relief to see the reaction subside. Sending you lots of love and wishing your son the very very best, lots of love TAD xxx

  • As long as it gets the job done a little bump can be lived with.

  • Hi offcuts am sorry you and ya boy are having to go trew all this is sicking BUT do stay posative

    When i had contrast dye i did have tickle in throat and my arsses was on fire that was defo iodine but i know they use a radioactive one that is expensive

    Am just glad the geting on with stuff and not waiting around AS i have read sooner the act better chances are.

    A do wish we was just talking about or on mundane stuff WISH you and boy all the best fella

  • Thanks mate.

    I cannot even have iodine on my skin now it flairs up so much it looks like MRSA? When they put it in me my BP drops to the bottom of my socks. So far all my heart procedures have to be done with me awake and dosed heavily with steroids. I have to tell them when I am feeling weird even though the BP machine is taken every 5 mins.

    Be Well

  • Is mad the lot of it .. I tried all sorts and something new pops up.

    Am getting better at knowing when am guna be bad ITs just cures a dont seem to be good at.

    Wishing ya well

  • No words to describe how sorry I am at what your son and the whole family are going through. It's wonderful that you are able to be such a support to him. Stay strong and stay hopeful. We are all hoping and trusting with you.

  • It is all down to time and good luck now.

  • Offcut Stay strong love each other believe in the medics and there treatment for your son. He is young he can fight and beat it. What a wonderful gift to be given by a complete stranger.

  • I cannot fault the way he has been looked after by everyone. The Donor I have no words that best describe how I feel but total admiration.

  • My heart goes out to you and your family at this difficult time, let's pray all comes good for your son, marvellous what can be done these days. Stay strong. Xx

  • Yes they are improving all the time. This is the third member of my family with it. My father was diagnosed in his 50's and past at 87 my mother was diagnosed at 93 and it was 7 weeks.


  • It is going to be a long wait for you and your son Offcut, and I truly hope all goes well when the time comes. Take good care of yourselves and accept all the help you are given. So good of you to keep us all up dated, when you are facing such upheaval in your life, best wishes for your sons future treatment xxx

  • A long wait if it is a success is all good to me.

  • You will be in my thoughts

  • I wish your son the very best of luck Offcut xx

  • Thanks

  • Yes me too - very very best of luck - I could hardly breathe while I was reading your story. xxxx

  • Thank you hope you are better now?

  • Yes - I just meant the "bittersweetness" of your story. It makes me feel "Come on .... the gods ..... come on .... you need some luck and success." Just the fight that some people have - it makes me gasp. Lots and lots love to you all xxx

  • That is a fantastic match I hope the transplant goes well, I'm sorry to hear about the liver problem but this is the down side of chemo.

    I hope you all have a fantastic Christmas Offcut and we are all thinking of you and your son take care.

  • Thank you

  • Must be so difficult for all of the family - I pray that everything works for him - please keep us updated xx

  • Will do it is all about the wait now.

    We got a call 04:30 telling us he is in A&E as his Temp has spiked. He has to call and go in as it can be a very serious infection with out all the symptoms showing because the Chemo takes out the things that let us know we are ill?

  • Must be a terrible time for you all and especially when you're not well yourself. Sincerely hope this is just a blip and that long-term things will work out well. Bless you all x

  • Only just seen this to all of you xx

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