Do Something Amazing Today

When Luca was battling Leukaemia and the years after he passed away I was very active with promoting Anthony Nolan. This UK blood cancer charity helps to match individuals willing to donate their stem cells to people with blood cancer who need lifesaving transplants. I can’t praise them enough for the help and support they gave us during the worst time in our lives. As well as joining the register, we encouraged family and friends join and we were very vocal about how easy it is to sign up and eventually donate if needed. Several half marathons and running the London marathon in-between pregnancies also helped to raise money and awareness.

I regularly went into schools and collages to give talks to 16-18 year olds about blood, organ and stem cell donation with Register and Be a Lifesaver (R&Be). This was an incredibly difficult and draining thing to do, but so worth it! Giving that education and dispelling myths about the whole process was very rewarding. Then with caring for two small babies made it difficult to volunteer as much as I would have liked. My passion hasn’t wavered in that time. I still want to encourage as many people as possible to join the register and to donate blood regularly as this can save up to three lives each time and is also essential during long standing disease.

Luca had a cord blood transplant around three months into his treatment. This bag of stem cells came all the way from Miami and I will explain further down the difference between the two. We were lucky we found donor relatively quickly, for other people it isn’t so easy. The cancer Luca had was very aggressive and he put up an incredible fight. There is also no doubt that the stem cell transplant gave us extra precious time with him.

I received this tweet a few weeks ago and it literally stopped me in my tracks. I just stayed still and silent while I read it over and over again. Over the years I have received hundreds of messages from Liverpool FC fans or teenagers from the talks I used to give. Mainly to tell Brad and I they had joined the register from seeing our charity work, or donated blood. I even had a few to say they had been lucky enough to donate stem cells. To receive this message though, well it was incredible and a privilege. That the person in question and that person was a child made me really emotional.

“Your campaign for Luca led me to register with Anthony Nolan and ultimately make a stem cell donation to a kid in France. The little one is alive and well now and happy to send letter updates to me” Andy via Twitter (2018)

Facts

Every 20 minutes someone in the UK finds out they have blood cancer. For someone with blood cancer a stem cell donation might be their last chance of life. Even though there are 27 million people on the register worldwide, this isn’t enough. Many people still can’t find a matching donor, and the stress this brings to patients and families is immeasurable. The overwhelming majority of people will not find a match from a sibling or relative, so the national database is where most donors will be found.

When you join a stem cell register you will get send a swab pack in the post. Your details are stored and you only get contacted if you are a match for a patient in need.  It is very unlikely that you will ever be asked to be a donor, around 1 in 800 will be a potential match. However your chance of being chosen to donate depends on your age and sex. Young men only make up 15% of the Anthony Nolan register, but they provide an astonishing 54% of current donations.

Currently, only 60% of patients can find the best possible match for a stranger. This drops dramatically if you’re a patient from a black, Asian or minority ethnic (BAME). In short, worldwide we need more young people specifically men, more BAME and more expectant mums to donate their cord blood.

Stem Cell Donation

A survey to find out why young men weren’t going the register found these results:

  • 28% were scared that donation would be painful
  • 22% were squeamish about needles
  • 25%  didn’t know what stem cell donation was

During the talks I gave I would ask students to raise their hand if they were scared on needles. I would then ask again if they had a piercing or tattoo. Quite a majority raising their hands to both questions! Luckily the lack of awareness is something that can easily be changed.

Peripheral Stem Cell Donation

90% of collections are done by Peripheral Blood Stem Cell (PBSC). Its a quick and simple process similar to giving blood. Before donating a nurse will come to your home or office and administer injections to boost your stem cells. Then the donor goes to a specialist centre where your stem cells will be collected via the arm. There can be some side effects like mild aching and tiredness, but after a couple of days this goes. Donating takes 4-5 hours and you can go home that day.

A friend of mine who donated told me he sat on a bed, watched tv and ate lots of biscuits! The father says it was one of the most rewarding things he has ever done. He is an Everton football fan and eventually met his recipient a few years later. Just so happened the guy was a Chelsea fan! The story was well publicised and they went to Goodison Park to watch Everton vs Chelsea. Incredible story of a selfless act that saved a strangers life. Click here to read their story

Bone Marrow Donation

The other 10% of people donate from their bone marrow taken from the back of the hip bone. This procedure is done under general anaesthetic and a syringe with take out the blood stem cells. The donor will stay in hospital overnight and can return to normal activities under a week. Bruising and tenderness are the most the common complaints.

Cord Blood Donation

Giving life twice one day! Cord blood is the placenta and umbilical cord, which would normally be thrown away. They are rich in stem cells and could save someones life. Cord blood has a lot of advantages, it is immediately available for use after collection. Getting adult donations can be a long process, running the tests, the donation and then getting the stem cells to the patient within 72 hours. Another benefit is the stem cells don’t have to be an exact match, the cells are immature so can develop to suit their recipient. This also means it is easier to find matches.

What Next?

All the register have slightly different criteria for joining, but all include a short health questionnaire. You only need to be on one register worldwide. Please consider joining a register (you only need to be on one register worldwide) and potentially saving a life. Registers for the UK and Netherlands are listed below, please see their websites for more information.

Anthony Nolan 

DKMS

Netherlands:

Matchis

Further Information

NHS Blood and Transplant 

Anthony Nolan Connections Video

 

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46 Comments

  1. Teresa
    March 8, 2018 / 9:25 pm

    I have been a registred donor for about 7 years now, after a friend was diagnosed with leukemia and I learned more about it.

    Keep up the great work raising awarness!

    • danirosejones
      danirosejones
      March 8, 2018 / 9:29 pm

      Thank you so much, great to hear. Sending you a virtual hug!

  2. Mariam
    March 8, 2018 / 9:53 pm

    I’ll definitely register in NL and hopefully I can be a donor ❤️

    • danirosejones
      danirosejones
      March 8, 2018 / 10:13 pm

      Amazing! Thank you so much, and remember to spread the word ❤️

  3. March 8, 2018 / 10:21 pm

    The most beautiful post you’ve written so far Dani. I read every word. You’ve got such a wonderful way to explain things in a simple way.

    I’m thinking that with so many people from all over the world in the kids school: how about organising an evening with a short lecture and organise a registration for as many people as possible?

    I can help you with that with pleasure.

    X

    • danirosejones
      danirosejones
      March 9, 2018 / 12:39 pm

      Thank you so much, and yes that’s something I would like to look into further
      Xx

  4. Nigel Griffiths
    March 10, 2018 / 9:05 pm

    Dani,loved this article.been a recipient of sct myself so I appreciate this story and the way you have written it is just perfect.i have met my donor and that was a great day for both of us and we are regularly in contact.it seems wrong that an old man like me should be here five years on and others don’t get here.keep up the work,it is really appreciated,thank you.

    • danirosejones
      danirosejones
      March 10, 2018 / 9:10 pm

      Thank you so much your comment, it’s really appreciated. I was repeating myself a lot about the whole process so thought it was about time it was written down.
      Had a lovely response and it’s spurred me on to do more work with blood cancer charities. So happy to hear your success story ❤️

  5. Nigel Griffiths
    March 10, 2018 / 9:16 pm

    I have volunteered to do peer to peer counselling for people who are about to undergo transplants as there is so much fear and negativity about the procedure.this is with Antony Nolan as I got my donor through them and it’s small but it is good to try to give something back so if you ever need anything l would like to help.

  6. March 19, 2018 / 8:30 pm

    This is so informative. I didn’t know most of these things about stem cell donation. And that blood cancers were so prevelant. You are an angel on this earth!

    • danirosejones
      danirosejones
      March 19, 2018 / 9:12 pm

      Thank you so much, it’s so important to me to spread awareness

  7. March 20, 2018 / 5:05 am

    Wow! I didn’t realize all of this! Thanks for sharing. I think I need to go sign up.

    • danirosejones
      danirosejones
      March 20, 2018 / 6:43 am

      You should definitely think about it! So easy and you could save a life

  8. March 20, 2018 / 4:31 pm

    This is a great, informative post! I donate blood regularly, but never thought about looking deeper into it. Thanks for the info, and blessings to you and your family. Thanks for being an inspiration to others.

    • danirosejones
      danirosejones
      March 20, 2018 / 4:38 pm

      Its such simple process, highly unlikely you would ever asked to donate.. But I always think it would be an amazing experience to help save a life

  9. March 20, 2018 / 8:58 pm

    Thank you for your dedication and raising awareness of leukemia. I learned a lot from this post and wish I knew that we could donate cord blood. I would have TOTALLY donated ours from our babies.

    • danirosejones
      danirosejones
      March 21, 2018 / 7:26 pm

      Raising awareness and dispelling the myths is so important to me

  10. Andjela
    March 22, 2018 / 2:03 pm

    This is so inspiring. Thank you very much. 😉

  11. gai
    March 22, 2018 / 5:38 pm

    Wow, what an amazing story. I didn’t know it was possible to donate in that way, at least not all of those ways. We need some more awareness around this topic!

    • danirosejones
      danirosejones
      March 23, 2018 / 10:50 am

      Spread the word! It’s so easy and could save a life ❤️

  12. March 23, 2018 / 11:48 am

    YES! Great post about always knowing how ot help and what a great story!

  13. Marjie Mare
    March 23, 2018 / 1:16 pm

    What an informative and precious post, thanks for sharing. The more we know, the more we can do to help.

    • danirosejones
      danirosejones
      March 23, 2018 / 5:22 pm

      Exactly, thank you!

  14. March 23, 2018 / 2:14 pm

    Wow! I had no idea the blood cancer could be so prevalent or that there was something we can do to help those in need. Thank you so much for this!

    • danirosejones
      danirosejones
      March 23, 2018 / 5:28 pm

      Thank you. Its so important to raise awareness

  15. March 23, 2018 / 4:21 pm

    Very useful information! This is very inspiring. Thank you for creating such awareness.

    • danirosejones
      danirosejones
      March 23, 2018 / 5:30 pm

      Thank you

  16. March 25, 2018 / 2:11 pm

    Great post raising awareness!

  17. March 26, 2018 / 5:01 am

    It’s very inspiring to read about all that you’ve gone through, and to turn around and not only teach others about the different options but to advocate for the cause so passionately and inspire others to get up and truly make a difference. Keep doing what you’re doing, the world needs more people like you…

    • danirosejones
      danirosejones
      March 26, 2018 / 7:30 am

      I’m blown away by the response to this post, especially as I’ve been fairly quiet about the whole thing for the past few years. If it inspires others and encourages people to join the register then I feel I have done my job. Thank you!

  18. March 27, 2018 / 11:43 am

    There was actually information on stem cell donation on the news yesterday morning! This is like a double whammy for me!

  19. Ashley
    March 27, 2018 / 1:48 pm

    After my father died of leukemia and lymphoma, I registered… Thank you for your dedication to raising awareness! It’s much needed and appreciated.

    • danirosejones March 27, 2018 / 2:49 pm

      My goodness he had both? Sorry to hear that and thank you

  20. March 28, 2018 / 12:56 am

    This is an amazing read… I donated my cord blood after I had my daughter last April and I am so happy I did it. If I can help even just one person it is worth it!

    • danirosejones March 28, 2018 / 9:18 am

      That’s so great to hear! Hopefully it will become available in more hospital soon

  21. March 30, 2018 / 12:57 am

    I’m so glad I came across your post. This was so informative and I learned a lot of new information here. Thank you for raising awareness about these important ways to help save lives!

    • danirosejones March 30, 2018 / 7:50 am

      Thank you so much. Im glad it’s helping to give so many people information

  22. March 30, 2018 / 1:15 am

    Thanks for sharing your story, and for raising awareness about this. It is interesting to hear about things like stem cell research, and to have hope that medical research will find a cure.

  23. March 30, 2018 / 1:34 pm

    It is so amazing when just an act like this can change someone else’s life so drastically. Making sure we do all we are able for others is a great feeling.

  24. Angie
    March 30, 2018 / 2:25 pm

    It’s so wonderful you’re raising awareness for this matter. I will have to do some research and see where donations can be made here in the US and what the criteria is. Thanks for sharing!

  25. Autumn Murray
    March 30, 2018 / 10:39 pm

    “Every 20 minutes someone in the UK finds out they have blood cancer.” I had no idea the numbers were so high.
    I love your campaign for more people to be on the registry. I donated my cord blood with both of my kids and I am going to get on a registry as you suggested. Thank you and best of luck.

  26. Marjie Mare
    April 12, 2018 / 6:48 pm

    Thank you for your beautiful and inspiring post. We can always finds something nice to do.

  27. April 12, 2018 / 7:06 pm

    Thank you for your dedication. This is a brutal disease and I’m so sorry for your loss.

  28. Markie
    April 13, 2018 / 1:06 am

    I’m so sorry for your loss. This post I so inspirational! Keep bringing awareness!

  29. April 14, 2018 / 9:54 am

    I am so very sorry for the loss of your precious child. He was a beautiful baby. I know this is a very dear subject to you, and your post is very informative for others.

  30. April 15, 2018 / 1:48 pm

    I am SO sorry for the loss of your beautiful baby. I love that you are trying to make something possible come out of such a terrible tragedy. I’ve been a registered donor since a friend in middle school got sick. I hope your post inspires others to take action!

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