Jayne S
Posted by

My MDS journey

Jayne S
Posted by
16 Apr 2014

My name is Jayne Snell. I have been married to Martin for 20 years and we have two gorgeous children - Matthew who is 17 and Jessica who is 15.

I was diagnosed with myelodysplastic syndrome (MDS) in February 2011 when I was 41. The only cure was to have a stem cell transplant, but at the time of diagnosis my quality of life did not warrant the risk. I was placed on a ‘watch and wait’ system.

Telling my parents and children was horrific. I remember Jess crying and saying that we wouldn’t be able to go shopping and have lunch together anymore! I told her that she was nearly at an age that she would want to shop with her friends. She said “but you’re my best friend, Mum”. It was heart-breaking.

Throughout the majority of 2011 I had few serious symptoms. I was anaemic and felt tired but I continued to work full time, run our family home with a lot of help from Martin and enjoy our holidays. As long as I got my sleep I was reasonably ok.

In November 2011 we were at Danes Dyke beach in Yorkshire and I could not walk up the path off the beach. Martin pulled me whilst Matthew pushed me. When I got to the top, which wasn’t that far to be honest, my head was really painful. I later found out that my brain was being starved of oxygen as it was all being used my muscles to help me up the hill.

When I got home, I wrote the dreaded email to my consultant telling him how bad I was feeling and that the time had come for some help. I didn’t know what that help was going to be.

I went to clinic that week and my haemoglobin level was at 7.5, which is extremely low. In January 2012 I had a bone marrow biopsy to find out exactly what was going on. The news was not good. I was at high risk of progressing to acute myeloid leukaemia (AML). I needed to go to St James Hospital in Leeds urgently.

The treatment for AML meant that I was in hospital throughout February, mostly in isolation while I received chemotherapy which reduced my immune system to zero. The chemo knocked all my blood counts so I was given regular blood and platelet transfusions. When my counts reached zero they recovered and I was allowed home for a few weeks.

I went back into hospital in April for a further four weeks, again in isolation to repeat the treatment, again being kept alive with numerous blood transfusions, before being allowed home for approximately four weeks.

A bone marrow biopsy revealed no leukaemia cells, which was great news! However I still needed the stem cell transplant to treat the MDS, otherwise the AML would most likely come back.

I went into hospital on 29 June for my conditioning treatment - six days of chemo and one dose of total body radiation. By now my bone marrow was empty and my immune system had been destroyed. I was kept alive by blood and platelet transfusions.

On 7 July I had my stem cells transfused through a Hickman line, just like any other blood product. The stem cells were donated by a 22 year old German man - he gave me the gift of life. Now we had to wait and see if the stem cells would take hold and start to make me all the blood products I needed - red cells, platelets and immune cells.

I am pleased to say that so far so good! My tests show that I am approximately 96% donor, so there is a little bit of me that we need to get rid of. I may have to have some lymphocytes, which will also be donated by my donor. However, we are waiting to see if my new immune system will recognise the 4% of me as foreign and attack them. I used to be O positive and I am now A positive - how amazing is that!

So here I am. I have had 48 doses of chemotherapy, one dose of total body radiation, 23 units of red cells, three units of platelets and one bag of stem cells. I spent a total of 13 weeks in isolation in 2012 - a quarter of a year. I don’t look back on it as a horrible year - I met some amazing people and to be honest I have a lot of warm and happy memories. My journey to wellness is continuing and I am meeting more amazing people.

When I had just been diagnosed, my son, who was 15 at the time, did a wonderful thing. He told me he wanted to do something to raise money for a charity of my choice and wanted to do a skydive! I was so proud of him!

We researched and found out that he had to be 16, which he was in January 2012. He eventually did his skydive in the July, as I was having my transplant. He raised a brilliant £2,970, which was split between Leukaemia & Lymphoma Research, Anthony Nolan and the UK MDS Patient Support Group.

Leukaemia & Lymphoma Research do a wonderful job in trying to improve the treatments and survival rate for people with blood disorders.



Hi Jayne....I have never made a comment before on my times fighting mds and aplastic anaemia.....I'm now 5 years from my first BMT and three years from my last transplant....so pleased you are doing so well! My children of a similar age. And though they cope they are affected....fingers crossed you stay well xx


Hi Jayne
Thanks for being brave enough to make a post about this rare condition.
I am the grandmother of a 2 year old who has this diagnosis and is awaiting a bone marrow transplant.
We have a tough time ahead as a family but it is good to see positive posts like yours.
Rosemary x


Hi, thank you so much for your comment. When I hear of people 5, 10, 20, 30 and even 41 years post transplant it really does make me believe I have a future. It's good to hear from you. It is really sad to see how it affects our children.
Hope is really important isn't it, and we have that now! May you live a long and blessed life xxxxxxxxxx


Jayne, thank you so, so much for sharing your story. It's fantastic to hear that the stem cell transplant was a success and that everything's going so well - this gives real hope to others that are going through MDS and will be enormously beneficial to those who have been recently diagnosed and their families. Great too to hear about your son's sky diving exploits - I did a sky dive once but I'm not sure I could do it again!


Hi 'someone that's been there', thank you so, so much for sharing your experiences with us. Sounds like you've been through a lot and it's great to hear that you're currently doing well. It can be difficult for families coming to terms with an illness like blood cancer - I know my sister found it difficult to know how to react to and she found it very hard to see me sick in the hospital. I've got my fingers crossed for both you and Jayne.


Hi Rosemary, thank you so much for your comment. I've got everything crossed for your granddaughter ahead of her upcoming bone marrow transplant. If there's anything we can do to help, do let us know and please do stay in touch with how she's getting on.


Hi anonymous, as you say we've come an awful long way in the treatment of blood cancer. Sixty years ago less than 4 in 10 children survived ALL, now that figure is 9 in 10. Treatments have also developed beyond recognition and are tailored to the individual reducing their exposure to the harmful toxins attached to chemotherapy. However, we've still got a long way to go before we beat blood cancer for good and you can rest assured that we will not stop until that's the case. Hope is really important as you say and stories like Jayne's really help with this. Thanks again for your support. Together we will beat blood cancer.


Hi, this is Jayne Snell. I just wanted to let you all know that last week I had a phone call from my hospital saying that my latest chimerism test is 100%!!!

I am now 100% donor, oh wow, wow, wow.

It has taken 705 days. I could have stayed at 98% and been fine, but I like being 100%!

Jayne x


Great News Jayne.

Best wishes for the future,


Rosemary x


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