The battle against ALL
It was a monday morning, just briefly after midnight in late January when it happened. At first it didn’t look like a big thing… just a bleeding nose. Nothing to worry about, right? Well, another 30 minutes passed and no matter what we tried the bleeding simply didn’t stop. Alright… maybe it’s just a bursted vein that needs to be sealed, so off to the hospital…
Four hours later we got the diagnosis: Leukemia!
We hear stories about (blood) cancer all the time, but usually it’s something that only happens to other people. Well, usually… suddenly your whole world trembles and your priorities shift and you realize that there’s an invisible enemy threatening the life of your child!
Fast forward to today it’s astonishing to realize how people adjust to circumstances and how routines kick-in. It’s months now that we know that our 5 year-old daughter is up for a fight against acute lymphocytic leukemia (ALL), yet… once you find yourself with the back to the wall there’s only one way to go: forward!
These days, my family takes comfort knowing that our daughter is in the hands of capable doctors & caring nurses and surrounded by kids that share a common fate. Outsiders would be surprised to experience the atmosphere at the oncological station: life-affirming optimism, strong support & heart-felt caring and a sense of empathy creating a unique community.
The fact that we all fight a common enemy creates a bond between medical staff, patients and their families that helps to keep going – knowing that you’re not alone in this and that together we can – and will – make it!
But this is not a story about my daughter or my family. In fact, I never imagined writing about all this in public until this morning. Yet, today is World Blood Cancer Day and while talking about this fact with my wife & my daughter this morning we came to the conclusion that it may be good idea to do so… For someone fighting Leukemia a stem cell donation may be the only chance to make it! And it’s so simple to register as a donor… and eventually save a life!
Having told my daughter about all this she encourages us to share her story hoping that more people would help kids like her and so here I am – on her behalf – sharing her story with you….
If you are interested to learn more about blood cancer and how-to help please find some preliminary information below:
- [Germany] http://www.dkms.de/en/worldbloodcancerday
- [USA] http://www.deletebloodcancer.org/home.html
- [Australia] Australian Bone Marrow Donor Registry
Those who feel an urge for action should be able to find information online about how-to become a stem cell donor or other ways to help in your respective country. It’s just a small step, but it can make all the difference. Today is World Blood Cancer Day and it’s a day to make your mark.…
Thank you for sharing your family's story and making us aware of this important day. I just made a small donation in your family's name. I hope others will do the same.
Hi Tammy,
thanks soo much for all you have done & are doing for my family! Words can hardy express how much it means to us to have you as a dear friend!
Warm regards,
matthias
Dear Matthias,
Your courage prompts me also to share more publicly. NOTHING hits the gut more viscerally than to see a child suffer ....and when it is your own child...nothing prepares you for the depth of that feeling. You Matthias Steiner have often been an inspiration to me and especially these last few months. In December my son was diagnosed with a bone tumor that threatened his brain and his eye and ultimately his life. Yesterday stitches were removed a week after a massive skull surgery that obliterated the tumor and restored him to health. Just today, I was thinking that there are so many ways to be thankful and many people to be thankful to and for: a higher power: be it the combination of spirit, family, community, amazing medical staff and technology. I personally am moved by the desire to give back, to honor, to pay-it-forward.
It would be my pleasure to make a donation in your family's honor.
With hopes and prayers for the best outcomes for all those needing special medical care.
Thanks for reminding us how important this day is to your and countless other families.
all the best,
Marilyn
Sad news to read Marilyn, wishing all the best to your son!
Kind regards
Twan
Dear Marilyn,
thanks soo much for your kind words and your donations! You have been a role-model for many of us within the community and for me personally as well. Based on this background your support for this cause for sure helps to reach out to more people that share your willingness to do good and as such it's wonderful to know you back this up...
It's been a sad day when you told me the news, but as we say in Germany "Shared pain is half the pain!" and hence I'm hopeful that something positive will come from you sharing these news with us! I'm very glad to hear that the surgery went well and that things are looking promising! Best wishes for a speedy recovery for your son!!!
Warm regards,
matthias
How brave that you share this message with us Matthias. As a parent this is your biggest fear - your kids suffering. Wish I could do anything to help ... wait that is why you wrote this blog. I am more than happy to donate in your daughters name and support you. Although it is only a very small thing to do, when the community / mankind steps up, we can make that difference!
No more cancer for kids!!
Take care Matthias Steiner
Thanks Twan for your comforting words and your willingness to support this cause!
Writing about this is not an act of braveness in the way I see it now... (blood) cancer patients are brave and everything else seems to be a small burden compared to it.
I believe that writing about my daughter's story is the least we can do if there's a chance to reach people and motivate them to become stem cell donors or help in other ways...
Knowing that you and others from this community stepped up and helped to amplify our reach is just another reminder how unique and great this community really is and it's heart-warming to be a part of it and a privilege to have soo many great friends out there!!!
Warm regards,
matthias
Knowing Matthias and his cute daughters, and seeing my own two boys sleeping in their beds, I thought it would be a good idea to register and become a donor. It took 5 minutes in total to go through the eligibility check and register. Simple as setting up a new mail account.
After registration it takes up to two weeks for DKMS to send you the registration set with the swabs, that are used to collect some spittle.
The more interesting part is how the stem cell donation later works in case, one has been identified as a possible donor. Turns out, in most cases this is a simple blood donation. 20% of the cases require an extraction from your pelvic bone under narcosis. If that's it what it takes to safe a persons life, I'm happy and willing to do this.
It's quite embarrassing that it took 42 years, this blog post and the illness of Matthias' daughter for me to register. I hope somebody out there will find a proper treatment with this very little donation of mine.
Oliver, good on you. I went to the site, and of course, I don't live close enough to qualify, but was re-directed to Home (Delete Blood Cancer).
Registration was a piece of cake - much different from years ago, when I signed up as a bone marrow donor for a friend of mine.
As you say, happy and willing to do this if it saves someone's life.
And special ➕ to Matthias Steiner.
Dear Sue,
you've been so supportive of us from day one and it means soo much to us! Thanks for registering and supporting this cause! You're simply amazing!!!
Warm regards,
matthias
Thanks Oliver for chiming in and writing about how simple it is to register as a donor! Yes, it really is that simple... and all it takes is to get oneself up and do it.
Sure, if you have been identified as a possible donor then you may get asked to undergo a pelvic bone extraction and - yes - it's a bit painful, but fortunately after a few days everything will be fine again. At least in Germany there's an annual appreciation dinner for all donors and the people who received the donation. So, you get to know the person that received your gift ... and I heard so many amazing stories of what sort of relationship was based on this gift.
It means a lot to us hearing you did register and we certainly hope others will follow your lead!
Thanks for being a dear friend Oliver!
Warm regards,
matthias
Australians can register at the Australian Bone Marrow Donor Registry. They manage the Stem Cell donations as well as Bone Marrow. The criteria are a bit stricter than for blood donors.
hth
Thanks Martin (and Graham Robinson) for sharing the link for Australia! Will add it to the post...
Hi Matthias,
I had similar experience with my father, days went into month, with the strong faith in the heart, passed in Hospital. "Don't Ever Loose The Hope" , this was the great lesson, I learnt and all finally went well. My father also like you, he changed a lot and his confidence level also increased, now on encourage everyone on give back to others who suffers.
There are lots are in the world. We knew the pain and deeply moved to share the pain. Thanks for enlighten, surely do the needful.
All will be fine soon,
Thanks and Best regards,
Jansi
Hi Jansi,
thanks for chiming in sharing the story about your father and for your encouraging words!
True, there are soo many learnings in this and it sure makes you realize how privileged we are and always have been...
It's soo easy to forget about all that and it comes naturally to mourn and wonder "why us?". Yet, there are definitely things to be grateful for indeed: that we live in a country where I do not have to worry about the costs of the treatment, that we live in a big city providing the best possible treatment, that I have a great employer and team that have been super supportive and of course having a great network of friends and family.
Warm regards,
matthias
Thanks for the courage and openness you have shown. I'm sure it will have a huge impact in ways not even seen yet.
We are here for you, as you know, and I will be making my donation as well.
Hi John,
thanks for the encouraging words and your contribution to this cause! Knowing that a few people already registered as donors makes it all worth already!
The support we keep receiving from our friends within the community has been simply amazing and we are so grateful for it!
Warm regards,
matthias
Dear Matthias,
In Brazil there are some institutes that support children with cancer:
(almost everything is in Portuguese):
GRAACC - Grupo de Apoio ao Adolescente e à Criança com Câncer
Casa Hope | Apoio à Criança com Câncer
AACC - Associação de Apoio à Criança com Câncer.
ABRACC - Associação Brasileira de Ajuda à Criança com Câncer
For information about how to donate Bone Marrow:
http://www.inca.gov.br/conteudo_view.asp?ID=64
Medula Óssea - Ameo
My best wishes and warm regards to you and your family.
Raquel
Thanks Raquel for the info and your well wishes! 🙂
Hi Matthias,
I was in a huge rush under work pressure, but I decided to "treat" myself with a 5 minute break to read your blog with the expectation to learn something new. Then I stopped. It was few days ago now and I am still under its impact. I wish you the best. (BTW I have just made my donation.). Regards, Tamas
Hi Tamas,
yeah, it has that effect on people to hear such news - I witnessed this a lot in the past months...
Thanks for your contribution and your well wishes!!!
Best regards,
matthias
Small status update: It's so simple to do
Seriously, what are you waiting for?
It's that time of the year !!! Help to make a difference - it's easy as 1,2,3!