Like most people, I feel like my family is invincible. I’m so lucky to have all of my immediate family still around me, happy and healthy. It’s something I take for granted each and every every day. And that is how you live until something stops you in your tracks. Something that completely whacks the breath out of you. That happened to me earlier this week.
In July, a family that used to come along to my local twin club received the worst possible news… one of their twin sons – just a bit older than my boys – was found to have a brain tumour. I’ve watched the news unfold on Facebook, as friends and family came together to pray the intensive treatment would be successful. Two days ago, his mum announced that it hadn’t worked. The tumours were too aggressive. Now treatment will begin that will hopefully slow down the growth to give them some precious time together where they can make as many memories as possible. I can’t put into words how devastated I feel for them. For the mum and dad who want to protect their baby, for the twin brother who will be left behind, and for the innocent little boy who should have everything to look forward to. We’re all hoping and praying for a miracle.
His story, unfortunately, isn’t a one-off. Over the last few weeks I’ve stumbled on more Facebook pages dedicated to children who have aggressive brain tumours. I’ve been shocked to find out how fast symptoms can appear and your child can go from being absolutely fine to having a life-threatening condition. The things most of the stories have in common is that it’s easy to misdiagnose the symptoms and it can take time for the actual condition to be diagnosed. In some cases, the delay of days or weeks could mean the difference between life and death.
Although I don’t know the family well, I can’t stop thinking about this awful news. No parent should ever have to go through this. It just shouldn’t be possible. But unfortunately it is. And it happens to too many families each year.
I feel like I want to do something to help, but in these circumstances there’s very little anyone can do other than offer support. I’ve given to their chosen charity and now, as a blogger, I’m going to do the only other thing I can think of…raise awareness of this hideous condition in the hope that it might make a slight difference to somebody, somewhere.
These things could save a life, so please read them:
Make sure you know the symptoms of brain tumours in children. HeadSmart is a fantastic charity that aims to raise awareness of childhood brain tumours to improve diagnosis. They have a detailed symptom list on their homepage. Or, even better, text SMART to 81400 and you’ll be sent a free guide (texts are charged at your standard rate). It goes without saying, but if you suspect anything at all go to your doctor as soon as you can and trust your instincts.
The next few things on the list aren’t directly related to brain tumours, but they are important for people with cancer and other life threatening diseases.
2) Give blood
If you can, sign up to be a blood donor. I received a few blood transfusions after my C-section when my boys were born. Without blood donors I wouldn’t be here.
3) Join the bone marrow and stem cell register
You can sign up with the British Bone Marrow Register if you’re aged 18 – 49 or the Anthony Nolan Trust if you’re aged 16 – 30. The procedures involved don’t sound as invasive as you might expect. One small gesture could save a life. Imagine if that life in need was your child?
4) Give your umbilical cord blood if you’re pregnant
I wish I’d known this was possible when I was pregnant. Giving the blood from your cord and your placenta doesn’t interfere with your pregnancy or birth at all. It’s a risk free way to help others. You can find out more on the Anthony Nolan Trust website.
If you can afford to, you can donate money yourself or raise money by doing something special. The ward that is treating the little boy I’ve mentioned has a Just Giving page. Any donation will go towards improving the lives of the patients and the families on the ward and I’m sure that every penny will be appreciated.
Please join me in sending out positive thoughts and love to the family involved.
I’d love to read in the comments below that this post had made some people think carefully about taking some sort of action. If you’ve popped over to HeadSmart to read up on the symptoms, you’ve decided to give blood or signed up to the bone marrow register or whether you’ve just spent a moment sharing some of the links I’ve included in this post on your own Facebook page or Twitter account to help raise awareness, then please let me know. If we each take small steps we can make big changes to the lives of others.
Nine days after publishing this post, the little boy I mentioned above gained his angel wings. He leaves behind a devastated mummy, daddy and a twin brother. Please follow some of the links above – you have the power to make a difference. Not every life can be saved, but by donating blood, bone marrow and cord blood you can help as many people survive as possible.
Paula Fox says
Since all of this has happened with poor Joe – I have registered (in the process of) being a stem cell donation with British Bone Marrow people. Donated and set up a monthly DD to help. As you say words cannot say how awful this is to happen to them and I, like you, are still numb. I will also be doing some fundraising in Joe’s name as well.
I just wish I could sign up to give blood or be a donor but because of my transfusions I can’t. Thankfully hubby is doing it instead and it turns out he has a very rare blood type which makes it even more important for him. Please let me know about your fundraising plans as they develop as I’d love to help where I can. xx
Paula Fox says
Yep no problem. Thinking of possibly doing Round the Isle of Wight walk 70 miles in 2 days! That’s a challenge! And you only have 10 hours a day to do it!
I’ll message you about it. x
I am so sorry to hear this news. Your post has been really enlightening and prompted me to actually do something. Thank you. And thinking of everyone effected.
Thanks a lot. It’s been so lovely to see so many people have shared and retweeted the post in Twitter. I hope some of them click through to the HeadSmart website too. x
Such sad news, squeezing my a littlest one tighter reading that. Sadly a medical condition means I can’t donate blood or bone marrow but my husband does and I was able to donate the cord blood from my second daughter. A very easy process, I like to think that one of my babies first acts in life was to potentially save someone else. I hope it will one day help a family like your friends.
Donating cord blood sounds so easy – I can’t understand why everyone isn’t told about it! It must make the feeling of birth even more incredible to think that you have helped someone as well as bringing a life into the world. x
Sending my prayers to his family. Well done you on raising awareness. X
Thanks. I’m so pleased the post has been retweeted so many times and lots of people have clicked through to the Headsmart website. x