Hello

[DBBH8]

Hello, firstly thank you for accepting me as a member. My son who is 17 years old collapsed playing football on 26th November and was taken to hospital where his blood levels were low. They carried out a bone marrow biopsy two days later and over the last 5 weeks he has had many tests, blood tests, blood transfusions, platlet transfusions and testing for Faconi Anemia. He was diagnosed with MDS on 3rd January this year and it has been a huge shock to us all. The consultant was amazing and they have already looked at possible donors, including my older son who has taken the blood tests. We have been told his conditioning chemo and stem cell transplant will be within the next 6 weeks. This has happened all really fast and I suppose I sought this support group to reach out and see if anyone has gone through similar as his age or even a parent of a child. I could just do with some support as I havnt been able to find much online. Thank you.

[JSCV47]

Hello DBBH8, I just wanted to pop on and respond to your post and welcome you. I am sure others will be along shortly who can be specific in terms of the support and information you are looking for but I didn't want to just read your words and move on. As you say the diagnosis of MDS is a huge shock - it certainly was for my very fit husband and I, and rocks the whole family doesn't it. Your son being so young makes it all the more painful and frightening I am sure. From what you have said it sounds like he has had excellent treatment so far and you have a Consultant that you trust. and get on with which is great. I hope a donor is found quickly and his treatment goes well. There is also a Facebook group - MDS UK Community - if you are on FB and need or want to reach out there. Sending love and a hug. JS

[chris]

Hello there, DBBH8 (if you're happy to, please let us know your name!).

And thanks to JS for your kind and helpful response too.

Goodness me. What a terrible shock for your very fit and healthy footballer son and for your whole family. MDS is a disease which mostly affects older people and it is very rare indeed for such young people to be affected. You must be in a complete spin about the proposed stem cell transplant happening so quickly. Younger people are fitter and stronger and thus stem cell transplantation can have a more successful outcome - so that is something really positive for you all to hang onto. I hope his brother is a match - though fully-matched unrelated donors are used with good success rates too these days. Please do have a look at the posts on this Forum about Stem Cell transplantation and on the website pages, including mention of 2 helpful books -The Seven Steps and Seven Steps, the Next steps which are useful guides to the whole process.

You may also find this video helpful. It is of a recent session we hosted where a Stem Cell transplant specialist from King's Hospital in London, Dr Victoria Potter, gives some clear information about the whole process and there is a Q and A session afterwards which might cover some of the questions you may have.
https://mdspatientsupport.org.uk/stem- ... -hospital/

We do have some younger members in our group (now in their 30s/40s) but I'm not quite sure of the age at which they were diagnosed. I'll see if I can get that information and ask them to respond. One of them also had an SCT at a young age and is now fit and well.

Please do join any of our Zoom patient support meetings where you will nearly always find somebody who has been through the stem cell transplant experience.

Once again, our thoughts are with you. It sounds as though you are in good hands and that your local hospital is a transplant centre, so it is good that you can be close by while the transplant is taking place and for the aftercare which is quite intensive.

Take care

Chris

[DBBH8]

Thank you both, and apologies for not introducing myself! My name is Debbie. Thank you both for your amazing kind responses, it is quite overwhelming but very comforting to know there are others who understand and support the situation.

Yes it has been a whirlwind 6 weeks but appreciate that my son is getting really amazing care and also very quickly! It has been hard as it is rare for him at his age and a little overwhelming but will be sure to use the resources and help on this amazing forum.

We have today been to the fertility clinic and this was such a difficult thing for my son to do, who would have thought I would be asking my 17 year old son to freeze his sperm!

Thank you for pointing the way to resources I will be sure to have a look. I did watch the stem cell video and Q&As and found this really useful. The problem with consultations is when you get the diagnosis results and treatment plan it is all over whelming and you don’t really hear all the words that are being spoken to you, so it’s amazing to have these resources to refer back to.

Again, thank you for your kind replies and I look forward to sharing my sons journey with you all and thanking you all in advance for support and guidance. Well wishes to everyone, Debbie.

[chris]

Hi Debbie

I just thought of another charity which offers fantastic support for young people with cancer, and their families. All sorts of information and helpful advice. Here’s the link to their website:

https://www.younglivesvscancer.org.uk/w ... ng-adults/

It used to be called CLIC Sargent but has renamed recently. It could be very helpful as a support resource for your son and there is a special support group for teens and under 25s.

I cannot begin to imagine the range of emotions for both yourself and your young son being faced with the prospect of future fertility issues and sperm freezing. It is so good that they consider this nowadays though. My nephew’s wife had leukaemia at a very young age and had very harsh chemo. Her mother then worried that it could have affected her fertility. Fortunately, she has had 3 healthy children but these days they would have ensured she had had her eggs frozen -just in case.

I’m so glad you’ve been able to watch the video. We had some very positive feedback about it. (I’m the person facilitating it so you can put a face to the name!!). Do try to get hold of those books too. Antony Nolan charity provides printed copies free I believe.

As well as the consultant, most hospitals also have a Clinical Nurse specialist and there are many who specialise in transplants. Do ask if you have a named nurse as they can be a great source of support and information. MacMillan are also very helpful with financial help that is available ( not sure if your son is working or still at school/college?).

And I just wanted to say please look after yourself too. You’ll need a lot of practical and emotional support while you and your family are going through this experience. Some hospitals offer counselling for both patients and family members. MacMillan also offers this I believe. If friends offer help, let them. They’ll be glad to support you. Maybe also get some meals prepped now and in the freezer for when you’ve had a long day visiting your son and are too tired to cook?

Best wishes to your son and your family

Chris

[chris]

Hi Debbie

Not sure if you’ll be checking this Forum but just wondered how everything was going for your son? Hope a donor match was found for him?

Kind regards

Chris

[TTBS14]

Hey Debbie,

Hope things are ok with you and your son!
Wanted to reach out on here as I was diagnosed at a similar age to your son and am now 5 years post bone marrow transplant.

I’d be happy to speak to you or your son or share any info that I can if it would help? CLIC sargeant that is linked below was a great help. Also TYA based at Guys hospital are a brilliant resource as well as they support and help signpost to numerous services all under one roof specifically for young people, their support was amazing.
https://www.guysandstthomas.nhs.uk/our- ... tya-cancer

Happy to share, help or support in any ways I can. I know how rare it is to be a younger person dealing with this.
Tilly

[DBBH8]

Hi sorry Chris it’s been a hectic few weeks and it’s all her a whirlwind of appointments and tests. Kian was poorly with neutropenic sepsis so was hospitalised for a while but is ok now. Still having weekly transfusions as his blood counts remain low but it helps. But on the positive side we have a donor match and are just waiting on our biopsy results to come through to get the ball rolling.


Hi Tilly, firstly thank you for replying to my post and secondly for sharing part of your story. I would love to chat more with you as a mum I’m really nervous and anxious and have read a lot of books but they don’t really relate to a young person.

I hope you are well in yourself and thank you

Debbie

[chris]

Hi Debbie. So good to see you at the meeting today and I hope you found it helpful-even though most people on there were a lot older than your son - but you know by now that it’s not unheard of for younger people to be diagnosed.

So pleased to hear that everything is moving to bring your son to transplant as soon as possible.So sorry to hear he had a bout of sepsis? As you will have heard from Dr Hockings and some people on the call who are post-transplant, it is not an easy process but your son is in good hands and he will need lots of TLC when he comes out of the transplant process. Good job he’s still at home with Mum!

Keep us updated. Thinking of you

Chris