Dad lost his fight

[Karen]

Dad went into hospital in mid August as his red call count remained very low despite frequent transfusions. He was on steroids to try to supress his immune system which his consultant believed was destroying his red cells in the marrow before they could mature.

His doctors were hoping to stabilise his counts so that he could start Azacitidine, but he developed pneumonia which didn't repond to treament and he was admitted to ITU where he sadly passed away 6 days later on 14/9 with Mum and I, plus his three brothers and two sisters in law by his side. The multiple interventions to tackle the pneumonia complicated by his low red/white/platelet count meant that he just couldn't fight his way back.

To say we are devastated is an understatement, especially as we believed that he was going to respond to treatment and that we would have him for a lot longer . Ironically his MDS was not progressing aggressively, it seems that his body's auto immune reponse was destroying cells quicker than he could make them.

We took him back to his homeland of Ireland where he was buried after a beautiful service filled with music, just as he had requested. A single tin whistle player played a slow tune and then a joyful reel at his graveside, which had been one of his final requests.

I hope to continue to be involved in fund raising for the MDS Patient Support Group, and I believe that donations of nearly £400 were made in place of floral tributes for Dad's memorial service in the UK.

I'll keep all of you still living with this disorder in my thoughts. Breakthroughs are being made all the time, and I hope that your story will have a happy ending.

Karen x

Padraic Lynch RIP

[janetstanford]

Karen
I am so sorry i did cry a little when i read your post a couple of hours ago and my thoughts have been with you and your family since so sad
i believe from your posts that you and your dad were close and that your support of him through his illness was unlimited he must have been as proud as any dad could have been of his daughter
i do hope that you will remain a member of the forum and i am sure you will continue to raise badly needed funds for MDS which you have done several times i the past for and with your dad
i do hope you stay in touch with us on the forum let us know how you are doing
my condolences to you and your family
Janet

[chris]

Dear Karen

So sorry to hear your sad news. You have been so tremendously supportive to your Dad and Mum through these difficult times and have made some thoughtful contributions to this Forum. Thank you to your family and friends for all you and they have done to raise funds for our small group - the existence of which helps so many people to become better informed about MDS and supported in the knowledge that they are not suffering alone.

You gave him a wonderful,fitting and moving send-off. It must be so hard for you all to move on without your Dad but time does make life easier..... eventually. Please accept my condolences.

Best wishes

Chris

[murrayfs]

Dear Karen,

I just wanted to add my sentiments to the other posts you have already received. I'm so sorry to hear about your father, it is always sad when a fellow patient passes away, and having lost my own father (not to MDS) 5 years ago, there is very little that can compare to the sorrow of losing a parent. They are the one person that has known you all your life, and will have had such an impact on the person you are today.

Our thoughts and prayers are with you and your family.

Thank you so much for your donations to the patient group, as Chris said, it does so much to help raise awareness of this disease and provide the much needed help and information to patients and their friends and families.

take care
best wishes
Fiona

[Karen]

Thank you all for your lovely messages.

I was worried about posting anything because I didn't want to be giving negative news to anyone else living with MDS. However, you are the only group of people who know what living with this is like, and this has always been a place where it is easy to share.

At this stage I am going through all the questions in my mind of what I could have done better to help him. If I had advocated for him more at medical appointments, would this have made a difference. The fact that he was prescribed Azacitidine by Kings in March, but never received it, and was given steriods instead, has of course left us with questions. We spoke with his consultant hemotologist shortly before he died and she assured us that the Azacitidine would not have resolved his problems, namely his immune system's assault on his immature cells. So, as we cannot change what has happened, we have to live with it. I know that this casting about and questioning is all part of the grieving process, so I guess I'll just have to get past it.

I shall keep up with all your progress, my thoughts shall be with you.

Karen x

[david]

Karen

Just to say how sorry I was to read that despite all efforts MDS overcame your dad's struggle

Best wishes

David