I will have a read up on it, and very good luck with your sons treatment mate.
mike
A few months ago i made this post:
Terrible Year with a very happy ending
Unfortunately the tale had a final twist and my son has had a relapse. He is now being treated for 2 types of cancer, both are different leukemias and there is also some in his brain. to say we are gutted is a massive understatement but to watch him cope is a thing of wonder.
His chances are slim and we are looking to the staff here at Great Ormond Street Childrens Hospital to help us make our decisions. Fortunately, the Drs here are determined to carry out treatment at the moment so he is undergoing a bespoke and intensive chemotherapy treatment pathway. we will find out in a month if it is working properly and if he is well enough for a bone marrow transplant. It is surreal to have to consider the options according to certain scenarios but we will be guided by a single principle: Dignity.
Luckily, as a white british male, he has the best chances of finding a donor and at the moment there is a 9/10 match on a register. This means that of the 10 markers used to assess someones suitability for a donation, there is a donor somewhere who matches 9. this is good enough to use but not as ideal as a 10/10 match so the search continues.
That brings me to the real point of the post. If any of you have the time it would be amazing if you could consider registration with either DKMS or the Anthony Nolan Trust to find out if you might be a suitable donor for one of the thousands of people worldwide who need a miracle.
Last edited by poppy; 10th August 2017 at 10:34.
I will have a read up on it, and very good luck with your sons treatment mate.
mike
I find it difficult to fully appreciate the extraordinary difficulties that you and your family are going through but I wish you and your family all the best and I really hope for the best possible outcome for you and your son. Best wishes. Dave
Good luck everybody. Have a good one.
Thank you for sharing this at such a difficult time and raising awareness of the donor registers. I am very impressed with your outlook. You and your family are very much in my thoughts. Best wishes, Matthew
The worst thing that can happen to a parent.
I can only wish your son, you and the family the best of luck and enough strength to cope.
Take care,
Daddel.
Got a new watch, divers watch it is, had to drown the bastard to get it!
I've been on the AN register for years now, had a potential match about 8 years ago but nothing came of it the end so i hope they found a better match. Wasn't aware of DKMS until your post so i've now just registered and should get my swab kit etc soon. Thanks for bringing that to my attention and best wishes for you all in the months and year to come. Glenn
Fingers crossed for a good outcome...that's about all I can do, I'm afraid.
I looked into bone marrow donation some time ago, only to discover that was too old. For anyone that is interested, this is from the FAQs on the Anthony Nolan site:
Who can become a donor?
To join our register, you have to be between 16 and 30 and in good health. You’ll stay on the register until you’re 60.
You need to be fully committed to donating your blood stem cells or bone marrow if you come up as a match. Watch our animation to find out what the two methods involve.
We’re particularly keen to recruit more young men on to our register, as they are the most likely to be chosen by doctors to donate.
We also have a lack of black, Asian and minority ethnic (BAME) potential donors. We urgently need more, so we can help more BAME people in need of lifesaving transplants.
Here's hoping for your son...my best wishes to him, you and your family.
My thoughts and best wishes to you all at such a difficult time.
I'll be urging my nephews and niece to sign up as they meet the required criteria.
For those of us ineligible to join the registers, a financial donation in support of their lifesaving work is an option.
https://www.dkms.org.uk/en/donatemoney
https://www.anthonynolan.org/8-ways-...ife/give-money
I'm surprised you can't register if you're over 30 but they still keep you on it until you are 60, this must preclude an awful lot of people.
I donate blood every 3 months and platelets now and then and would happily register as a marrow donor but it seems I'm too old.
There may be hope for you yet! The British Bone Marrow Registry has different limits for blood donors (link)
How can I join the register?
You need to be aged 17-40 years old (registered before your 41st birthday), male and be a blood donor. We also accept females, within the same age range, from Black, Asian, minority ethnicities and mixed ethnicity backgrounds. These criteria reflect the donors that we are short of on the BBMR. All of our donors are made available for search on the Anthony Nolan and NHS Stem Cell Registry. For those who wish to become a stem cell donor and do not meet our recruitment criteria, opportunities exist to join one of our other partners who make up the Anthony Nolan and NHS Stem Cell Registry; either Anthony Nolan or Delete Blood Cancer UK. Donors in Wales may consider the Welsh Bone Marrow Donor Registry.
You can join when you next give blood, or at the same time as your first donation. We will check that there is no medical reason preventing you from being both a blood donor and a stem cell donor. At the time of your blood donation we will take an extra blood sample, so that we can identify your tissue type for the registry from your DNA - the genetic material our bodies are made up from. Please inform the staff at the blood donation session that you wish to join the BBMR before your blood donation is taken.
Not much I can do or say, other than wish you and yours all the very best.
I have registered with both. Who knows if it will ever come to anything, but you never know.
Again, all the very best to you.
I wish your son and family nothing but the best. I am on a marrow register here in the U.S. but have never been contacted.
Worst nigtmare for a parent
Spent some time in GOSH with my son and will probably spent some time again soon
Not the extent of your torture pal and i wish you all the best luck and our prayers are with u and your family
Been on donor list since age 17 where we all have been tested for my cousin that suffered from leukemia.
I have been struggling with whether or not to make this post but decided i would.
Unfortunately my son died a few weeks ago.
My wife and i are still coming to terms with it but i am amazed by ourselves. we have managed to be OK. we are sad a lot of the time and the sense of loss is crushing, but we are able to be happy more and more and to enjoy time together and to return to some sort of normal.
Daniels condition had begun to improve. His chemotherapy was effective and his tests demonstrated that the cancer was likely to be gone. After the chemo, he contracted Para-Influenze and due to his weakened immune system he was unable to shake it. He ended up in intensive care. eventually he was unable to manage his own breathing so a machine was doing that and a heady cocktail of drugs were used to paralyse him, sedate him and control his pain.
we had found ourselves closer and closer to making a decison to turn off his support. every day for atleast a week before he died we would sit with the team who were caring for him, and after some consultation, would ask a single question: "Do we continue?" fortunately, every day in the balance of what could be achieved and with what he could tolerate the answer was always yes. We had made the team assure us that they would be honest with us when enough was enough and that we would not let him be dragged along on a machine. his dignity was incredibly important to us. to be pushed and thrashed by machines and drugs was not right and we were careful to be sure to do everything we should, not necessarily everything we could. the difference was clear and massive to us and the team looking after Daniel were completely on board and in agreement. Every day that we continued, we did so because there was still a solid belief that he could recover.
On the mornng he died, we were only a short distance away in hospital accomodation and were called to be with him. in the 3 minutes it took me to arrive, out of breath, half dressed and bear footed, he was already gone.
We had an amazing celebration for Daniel at which people were dressed in bright colours and were happy and managed to find some joy. In the time since he died, i have started a new job and have moved to a new house. i think these things have helped us transition.
I started this thread about bone marrow donations and hoped Daniel would be well enough to undergo treatment. Whilst this has turned out to be impossible for him we have found out that 3 of the people who registered after following Daniels's story on Facebook have been called to give stem cells. we are very proud that Daniel has inspired people to donate and that there are 3 lives which have been given hope and a chance to continue by incredible people who have done this wonderful thing. If there are any others out there who could do the same i would love for you to give some consideration to being able to donate.
My heart goes out to you mate. Wishing you all the best. Dave
Good luck everybody. Have a good one.
I followed your previous thread and promptly registered myself as a donor with DKMS.
My heart goes out to you all. I hope that you and your family can gain some very small amount of comfort from the fact that your son's life and his story may help to save others
Not much of one for emotional stuff, just to say our thoughts are with you and your family,
Paul & Juliette.
"Once is happenstance. Twice is coincidence. The third time it's enemy action."
"You gotta know when to hold em and know when to fold em".
Heartbreaking, all the best OP
I am so very sorry to hear of your struggle and loss.
Like many on this forum and,no doubt,elsewhere,my thoughts and prayers are with you.
So sad...my condolences to you, Dan, and all of Daniel's family.
It's not the best resolution to this thread, but thanks for posting. At least some good will have come from it.
I cannot image what you've been through, but it sounds as though you're coping pretty well. All the best for the future, Bob
Dan, thank you so much for sharing your sad and difficult update with us all. Your outlook and attitude has been quite inspirational throughout and the celebration of Daniel's life sounds wonderful. We wish you and your family the very best as you move forward. You are in our thoughts, Matthew and Alison
I'm so sorry to hear your desperately sad news. The fact that three people so far - and no doubt more to come- have already been called upon to donate is a fantastic legacy. I just wish things had worked our differently for you.
Sincere condolences
Jon
I'm so so sorry. I found your words very moving and my thoughts are with you, your wife and family. You have done everything you could, and I hope you are both there for each other now. I am sure at times the grief must be unbearable, but it sounds like you are able to support each other through it and have the memories of the good times with your son, and his inspiring others to donate to help others.
Very best wishes for the future
Scott
It's just a matter of time...
I'm very saddened to read this. My condolences to you and your wife and your family and friends.
I'm so very sorry to read this, our thoughts and prayers are with both of you, Daniel's family and friends.
Fas est ab hoste doceri
I am so sorry for your loss. :( It was this thread that inspired me to registered as a donor with DKMS.
This was a very difficult read.
My son was diagnosed with ALL (acute lymphoblastic leukaemia) almost 3 years ago to the day. We have another 6 months of treatment to go but when you experience something like this you always have that little demon somewhere in your thoughts.
Your little boy Daniel will live on in my thoughts along with all the other children we have known and lost over the last 3 years... there have been far too many. However, there would be so many more without the great work and support of the many charities.
All the best to you and your family for the future.
Incredibly tragic to have to say goodbye to your own child, my thoughts are with you and your family
I've just read this emotional and inspirational thread. Thank you and thank your Daniel for bringing this matter to my notice and to making me do something.
Daniel is indeed a special wee boy who has opened the hearts of us all here on a simple forum.
May he rest in peace and rise in eternal glory knowing that his very loving and fully devoted parents have prodded and educated many into doing something, even if that "doing" is just thinking.
You have my complete respect and my unbounded sympathies.
Jim
Can't imagine your pain, so sorry to have read he didn't come through.
I have been on the register for some time.
In memory of your son, and in tribute to you and your bravery, i will ensure that everyone i know at least hears about this register as i haven't been active enough in telling people.
My sincere condolences, and, for the very little it's worth, i think you did the right thing.
All the very best
Mike
Very sad yet inspiring read.
It amazes me how people can find strength and courage in the most harrowing and tragic of circumstances.
One of the things that make us human I guess.
Unfortunately, just too old by a few months to register!
Your story has inspired me to be more aware of how I can help people.
Think I have already registered as an organ donor ( can't remember :( ) but am going to check.
Anyway, very sorry for your loss.
Edit: just registered for organ donation. I'm sure you have all done this already but it only takes a couple of minutes :)
Last edited by kozza6; 16th August 2017 at 15:56.
From reading this thread. One thing is clear. Daniel has amazing parents.
Really a worst nigtmare for any parent
Daniel is watching u and i am sure he is proud of his parents
Things will not be the same but i am sure he would want you to smile at him and not cry
Will be visiting GOSH with my little boy at some time soon and my thoughts will be with your family