Counselling for 9 year old, Dad recently diagnosed with AML

I think it depends on who gives you that transplant talk. There are three transplant consultants where I was treated,UHW Cardiff and my consultation was fairly gentle,though she did explain the risks involved.I did hear that one of the others could be a bit less gentle in the consultation. I had read a lot about transplant ( probably too much ) so I was ready for a bit of doom and gloom.

If you want to private message me for any help or information feel free.x

Mark 

Thanks so much for the reply. We are waiting to see if my husbands sister is a match to be a donor. She lives in New Zealand so it could be interesting! 
I think we are both sometimes frightened to ask questions. So far it’s been; high risk due to a mutation, problems with potential donors due to rare blood type and so you just sit there and think please no more bad news.  
Having said all this my husband finished his second round of intensive induction chemo 2 weeks ago and he is walking 4 miles a day and he has been for a 3 mile run tonight. I am hoping his general fitness will help him cope with the treatment thrown at him.

thanks again xx

The transportation of Stem Cells happens day out day in with people working on contract as couriers.

The frozen Stem Cells are kept in a wheeled freezer flight cases that is plugged into the plain power……. Interesting job.

Brilliant! Every Saturday morning we Skype my sister in law in NZ and we always get on to how the stem cell will be transported. I can now answer the question!

My donor was from America and there was a flight delay so I had mine a day late. 
Also my donor was blood group A whilst I was group O , I am now group A !!

Hi Durpy Pug

Just read through this thread, firstly sorry to hear of your husband's situation. Stay strong and positive, it really helps. My wife was diagnosed in October 2018 and had 3 rounds of Chemo and one of Flag ida. She was in remission for almost 20 months and Is now ready for a Stem cell transplant taking place at UCLH in London on 4th August. Going in next Wed's for 7 days of conditioning prior to the transplant.

It's normal as Parkrun and The Highlander (mike) has stated to have your husband's biopsies tested in London. Most Hospitals keep some samples back to check locally for other things like blood counts for other areas but the metamorphic and molecular tests ate trickier to diagnose and are generally sent away for analysis. 

Has your husband's sister been tested yet and if so is she a good match. If so they will no doubt do all they can to get the stem cells to him.

Luckily my wife's sister is a 10 /10 match and with no other evidence of some other chemical within our blood which the consultant told us about just yesterday that can cause minor problems with transplant so we're realy positive going forward.

I have been and will be for some time be in the exact same position as you at this time and yes it is frightening, there is no getting away with that, I have even been quite unwell recently with worry but I am learning to cope better now. 

The meeting with my wife's consultant yesturday went really well. He first asked if we wanted to know "figures" relating to success and failure, to which we declined. We are where we are and figures in our opinion  won't change that. However he was very very considerate and explained the risks of infection s and side effects of treatment along with other treatments going forward including Gvhd and what treatments will be offered to prevent this or how to deal with this should it happen. 

I believe that soo much technology and improvements in therapies, regimes and treatments over the past 10 years have greatly improved the outcome for patient with AML and other blood cancers and have given more hope to those with these diseases. I hope all goes well for your husband on this journey nobody want to travel but please rest assured that everything and everyone Involved will do al they can to help him along. Please feel free to message me or ask any questions you like on this forum and I will help as much as I can. I will keep everyone posted also on my wife's progress also over the next few weeks as she undergoes her SCT.

TAKE CARE

Nick

Hi Fulhamboy.

Thanks so much for your reply and so sorry to hear you are on this rollercoaster journey as well. It’s all so frightening and sometimes hard to keep positive. Sometimes when my husband is out of hospital and we are doing ‘normal’ things like going for a walk or having a family meal you kind of forget for a few minutes what is going on but then the panic and fear comes back and can be quite overwhelming. The life you once planned or hopes for the future are thrown up in the air and it feels like you are grieving for a life together that now doesn’t feel like a possibility. 
my sister in law is having her bloods tested tomorrow to see if she is a match. Keeping everything crossed for some good news on that one.

I really hope everything is going well for your wife, it must be such scary time waiting for the transplant. I have found a lot of comfort in all the positive stories post transplant. You are so right in your words about the technological advances and the amazing things that can be done today. One of our consultants said that in the US now they are starting to do Stem Cell Transplants as outpatients!! The fact that stem cells can find their own way to where they need to be still blows my mind!

All the best, I will be think of you in the weekend ahead

Hi Durpy Pug 

Your soo right about forgetting the situation your in for a short while and life seems normal until reality strikes.

You must try not to think of the future in a negative way, I know it's very hard, but you have to stay positive for all your family and especially for your husband, it will make a massive difference to the way he will feel.

I have, and still am having bouts of deeply sad feelings for whatever the future holds but I keep those thoughts locked away inside so as not to see my wife get upset onto of her personal stress and anxiety.

She is the strongest and courageous person male or female I have EVER known, its truly quite amazing. It realy is the best way to be. I just wish I had more of what she is made of.

I will keep everything crossed in the coming days whilst you await the test results. 

What you say about the US and outpatient treatment IS happening here. My wife's conditioning and transplant is all being carried out as an outpatient, however she and I can stay together in a "hotel" just 2 mins walk from the Hospital.  You only go into the main Hospital if you become too ill. Some patients have never gone to the Hospital before discharge. It must be si nice having g not to be stuck in a ward all the time for 4/6 wees.

Well I will find out just what it's like when we go into admission on Wednesday this week, I will keep you posted.

BTW Which area do you live and where is your husband being treated?

Take care, and stay positive 

Nick.

Hi Nick

I really hope it is going smoothly for you and your wife today. It’ must be nice to think  that you can stay in the ‘hotel’ together rather than be separated. The separation is so hard to come to terms with.

my husband met with his consultant today and round 3 chemo is imminent and biopsy was clear, so very thankful. 

We live near Leeds and so we will be going to St James for the transplant if all goes well. Thankfully we are only 20 mins drive away. It’s more like an airport departure lounge than a hospital, shops, restaurants.  I believe there is a hotel part there as well.

I will be thinking of you over the coming days and sending virtual hugs.

sam