Hi , Robbie (25) was diagnosed just over 6 months ago and we have been told stemcell transplant is his best hope
Donated stem cells and waited .
He has been in criticalcare several times since then and has right side facial paralysis during a bout of sepsis which is getter better now , however he is quite over weight and his appetite has been huge maybe due to steroids , they recently brought him in to access him for transplant and gave entirely negative talk to us about his poor chances of making it through this transplant and asked ifhe still wanted to go ahead. We we left devastated as were told best chance now they have actually refused to do it .
Robbies regular Drs say they were shocked at this as still think its his best hope.
Feel so confused and lost and
dont know what to do now.
Hi Leonie,
I am very sorry to hear about your son’s situation.
Have you considered talking to your son about getting a second opinion? You can do that at any stage. Generally medical staff are happy to help you do this.
Please see the following link which has a section on what to do if you/your son have questions about the care your son is receiving called “Questions about your care”.
I hope that helps.
Take care of yourself. It must be a very worrying time for you all.
Thank you . Will take a look .
Hi @Leonie I am so glad that you have found us, you must be beside yourself with shock and fear and then you have your maternal/paternal feelings and thoughts mixed in.
Robbie is also the main decision maker at the age of 25, although they might seem still your little one !!
It sounds as if your Robbien has been very ill in the last 6 mths as well.
@purdy1966 has given you great advice on requesting a 2nd opinion.
In the meantime the main thing you can do now is to take lots of care of yourselves, yes, both of you otherwise you will not be in the best place to care for your son.
If you would like to talk to someone the Blood Cancer UK support line is there for you and so are the Blood Cancer UK nurse advisors @GemmaBloodCancerUK @LauranBloodCancerUK and @Heidi_BloodCancerUK.
Please do use our forum to tell us how it really is for you too
Look after yourselves and please keep posting
Hi @Leonie . That must have been really difficult to hear. @Erica and @purdy1966 have given you all of the information you need to contact Blood Cancer UK for support.
How is your son doing after hearing the news?
Please keep posting. We are here to support you all X
Oh @Leonie, what a terribly frightening time for you all. As Purdy says, I would definitely seek another opinion, given that there are two differing views within your two consultant teams. They can’t both be right. Hang in there, get this other opinion, and keep talking to us if you’d like to. We’re here for you and thinking of you.
Dear Leonie
I am so sorry to hear that your son is going through all this uncertainty. It sounds like your son has had a very difficult time in regard to his treatment toxicities too. This must have been such a worry.
May I ask whether a plan has been made for Robbie since it would be decided that Transplant was not an option? It seems you have been left with very little information which you clearly need. Does Robbie have a Clinical Nurse Specialist he can call to dicsuss this with? This would be very helpful as they would be closely working with the Consultants who make the tretament decisisons and be able to educate and support Robbie with this.
We would be happy to talk this through if that would be helpful, please do get in touch: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma
Hi @Leonie I have been thinking about you and Robbie (my fathers name) and I just wondered how you are both doing?
Look after yourselves