Here, Aud tells us about Kira. She has Neuroblastoma.
This is #KiratheMachine. Three years ago last month, in August 2014 , an 11 year old Kira was diagnosed with Neuroblastoma (NBL). Approximately 100 kids are diagnosed with NBL per year in the U.K. Most of these children are under 5 years of age and it is less common in children over 10. It most commonly originates in the adrenal gland above the kidney (Kira's was the right adrenal gland) but, it can develop anywhere within the body in nerve cells and, its cause is unknown. There is nothing that can be done to prevent its development and external factors do not affect it.
NEURO means nerve.
BLAST means cells that are in early development.
OMA means a group of cells or a tumour/mass.
At diagnosis, Kira's large mass in her abdomen equated to 2 litres. NBL is a solid tumour/mass but I describe it in liquid form to help your mind's eye imagine it. A "2L bottle of coke" within a slender 11 year old's body.....and still she participated in many sports whilst carrying this around inside her. Kira's symptoms comprised of stabbing pains in her side and general abdominal area. She would also occasionally vomit. Looking back on life then, I was constantly reaching into the medicine cupboard for Calpol to help her with her recurring but not chronic pains. We visited our local GP surgery over a period of 7 months. In between visits, symptoms would improve. Doctors attributed these pains to growing pains or being hormone related. In July 2014 blood tests were carried out and coeliac markers were higher than normal - thus resulting in a referral to Gastroenterology for an upper endoscopy to investigate the possibility of coeliac disease . An ultrasound scan was carried out to look at her abdominal area to eliminate any other reasons for pain and the mass was discovered. In a split second, our world fell apart at the seams .
As Kira's mum , I just knew instinctively that there was something wrong over that seven month period. My point in saying this is to encourage you all as parents /caregivers is to trust your instincts and have the confidence to pursue any signs/symptoms that make you feel uneasy.
Statistics researched show that 54% of childhood cancer cases present via A&E at which point the child is very ill and the cancer may well have metastasised making treatment more challenging.
After 15 months of treatment including 6 rounds of chemo; major abdominal surgery; radiotherapy then 6 months of differentiation therapy, she reached remission for a mere 12 weeks and then relapsed. A routine MRI scan in Feb 2016 revealed four new tumours growing in her abdomen & pelvis. She then underwent intense chemotherapy comprising of a cocktail of drugs Topetecan, Vincristine & Doxorubicin (TVD) for four rounds followed by High Dose chemo with Autologuous Stem Cell Transplant .
Treatment ended in August 2016 but yet another routine scan revealed a residual piece of original mass (unresectable at original surgery due to being wrapped around major blood vessels & would have been life threatening to remove) was growing again.
Treatment for journey number 3 with Relapsed High Risk Neuroblastoma began last month at Glasgow Children's Hospital . There is no internationally agreed treatment path for relapsed Neuroblastoma and Clinical Trials (experimental drugs) are the only option. The trial we have chosen for Kira is The Beacon Trial.
I realise this post is very long, but I can't tell the story in a more condensed way as Kira has been through so much and the journeys continue....
My son Bailey was diagnosed with an aggressive brain tumour medulablastoma aged just 2 1/2 years old... After 18 months of treatment including surgery, chemotherapy and radiotherapy he sadly lost his battle in 2005
Please support all our warriors.
Cancer is the biggest killer disease of children in the UK
Approximately 3 children/teenagers will die this week from cancer
Cancer is the most common cause of death in children aged 1 to 14 years, accounting for around 20% of deaths in this age group.
Brain tumours claim more lives than any other childhood cancer, accounting for more than a third of all childhood cancer deaths.
Help support those children who are affected my the disease.
The key thing to take from this is that cancer is not just one disease but a myriad of diseases with one common theme, irregular cell division. And the scariest part? Until January 2015, I never dreamt it would happen to my child. But here I am 20 months later and she is gone.
So, don't be an ostrich. Don't scroll and ignore.
This is real. It happens every day. It's happening right now.
So, what can you do?
If you haven't changed your profile picture yet - do it NOW!!
It is so simple and if you're really stuck, hell I'll do it for you! Just PM me
Or better still change it to Georgia's picture - how lovely would that be for us to see her face all over our news feed
Follow the links below
http://twibbon.com/support/go-gold-project
http://twibbon.com/support/glow-gold-september
Step 2? Share the links above and these posts - get your followers in on it too. Come on - you did the Ice Bucket Challenge and 22 Push Ups and who could forget the Mannequin Challenge? You don't have to do anything for this one... well not yet anyway!!
Well I did warn you that some of these posts you may find upsetting and here is the first one of the month. Yes, babies can be born with cancer too...
I wouldn't believe it myself if I hadn't seen it with my own eyes.
Nobody would know this unless you have experience with childhood cancer, but in the UK, we have a charity called @CLIC Sargent who provide excellent support and social workers to each family with childhood cancer. One of the many things you get is a big purple tote bag filled with all manner of things. But this bag soon becomes a silent symbol of a family we never wanted to be part of. For it signifies that there is another child with cancer.
Imagine my horror one day when I see a young couple carrying this bag alongside a baby in an infant carrier as they are admitted to our ward St George's Hospital.
Yes, sadly babies can be born with cancer too.
Please Go Gold for Evan and all the other children fighting cancer today.
The key thing to take from this is that cancer is not just one disease but a myriad of diseases with one common theme, irregular cell division. And the scariest part? Until January 2015, I never dreamt it would happen to my child. But here I am 20 months later and she is gone.
So, don't be an ostrich. Don't scroll and ignore.
This is real. It happens every day. It's happening right now.
So, what can you do?
If you haven't changed your profile picture yet - do it NOW!!
It is so simple and if you're really stuck, hell I'll do it for you! Just PM me
Or better still change it to Georgia's picture - how lovely would that be for us to see her face all over our news feed
Follow the links below
http://twibbon.com/support/go-gold-project
http://twibbon.com/support/glow-gold-september
Step 2? Share the links above and these posts - get your followers in on it too. Come on - you did the Ice Bucket Challenge and 22 Push Ups and who could forget the Mannequin Challenge? You don't have to do anything for this one... well not yet anyway!!
So here it is the first of the Daily Facts you will see pop up on your timeline. Sadly, last year my little 7-year-old daughter became one of these statistics. Another number. She was just a normal happy little girl doing the things that most little girls do.
She fought so hard to survive but sadly in December 2015, she gained her angel wings. So please don't think that it will never happen to someone you love. It happened to me and it happened to us.
And never mind statistics because, it is not rare when it is your child.
As you hopefully are aware, London & Partners actively support 2 cancer charities – The Brain Tumour Charity and Pancreatic Cancer. Whilst the latter is less common with children, Brain Tumours are sadly prevalent. This month, I will be sharing stories from real children and families who have been affected by this disease. Please take the time to read their experiences and share them.
We are a campaign started by parents and grandparents of children who have cancer, established to raise awareness of childhood cancer during September through gold illumination of iconic buildings throughout the UK, US and World. Please change your pro...
September for many marks the end of long summer days and hot summer nights; a farewell to annual holidays spent in warmer climes; trips to the seaside and funfair; BBQ's and picnics. It marks the onset of autumn, the first golden leaves, crisp chilly mornings, the return of the football season and for us - the launch of London Autumn Season
Our social media pages are awash with posts from proud parents as their children go off to school in oversized new uniform. This year we have the return of X Factor and the celebrate the announcement of a new Royal baby…
But this year September means more.It is the international month of Childhood Cancer Awareness #ccamIt is also Blood Cancer Awareness Month. Unfortunately for me, 2 things that have been the centre of my life.
So, what you may say? Well, today another 11 children will be diagnosed in the UK with cancer; today 11 parents will be devastated and 11 families will have their lives changed forever
So, what you may say? In the UK, cancer is the most common cause of death in under 14's, accounting for around one fifth of deaths in this age group. In addition, around 50 young people (15-19) die every year from childhood cancer.
And that's just in the UK.
It's heart-breaking
And although we try to dismiss it. It could happen to you.
Your friend
Your niece or nephew.
Your cousin.
Your sister; your brother.
Your child.
It happened to me.
So, what can you do?
Well for this month we are asking you to #gogold and #glowgold
With a simple click of a mouse, you can change your profile picture on your social media platforms to gold.
Share this with your friends too. Use the link below
http://twibbon.com/support/glow-gold-september
and use the hashtags #ccam #gogold #gogold4georgia #childhoodcancerawareness #glowgold #glowgold4georgia
I would love to wake up tomorrow with the whole of Facebook/ Twitter/ Instagram gold but for now I would be delighted for you to change it.
I would be even more delighted if you used my profile picture of Georgia so that here memory can live on through you.
You can also share my profile photo to show your support for us #gogold4georgia
Please join the our facebook pages https://www.facebook.com/KidsForeverGold
September for many marks the end of long summer days and hot summer nights; a farewell to annual holidays spent in warmer climes; trips to the seaside and funfair; BBQ's and picnics. It marks the onset of autumn, the first golden leaves, crisp chilly mornings, the return of the football season and for us - the launch of London Autumn Season
Our social media pages are awash with posts from proud parents as their children go off to school in oversized new uniform. This year we have the return of X Factor and the celebrate the announcement of a new Royal baby…
But this year September means more.
It is the international month of Childhood Cancer Awareness #ccam
It is also Blood Cancer Awareness Month.
Unfortunately for me, 2 things that have been the centre of my life.
So, what you may say? Well, today another 11 children will be diagnosed in the UK with cancer; today 11 parents will be devastated and 11 families will have their lives changed forever
So, what you may say? In the UK, cancer is the most common cause of death in under 14's, accounting for around one fifth of deaths in this age group. In addition, around 50 young people (15-19) die every year from childhood cancer.
And that's just in the UK.
It's heart-breaking
And although we try to dismiss it. It could happen to you.
Your friend
Your niece or nephew.
Your cousin.
Your sister; your brother.
Your child.
It happened to me.
So, what can you do?
Well for this month we are asking you to #gogold and #glowgold
With a simple click of a mouse, you can change your profile picture on your social media platforms to gold.
Share this with your friends too. Use the link below
http://twibbon.com/support/glow-gold-september
and use the hashtags #ccam #gogold #gogold4georgia #childhoodcancerawareness #glowgold #glowgold4georgia
I would love to wake up tomorrow with the whole of Facebook/ Twitter/ Instagram gold but for now I would be delighted for you to change it.
I would be even more delighted if you used my profile picture of Georgia so that here memory can live on through you.
You can also share my profile photo to show your support for us #gogold4georgia
Please join the our facebook pages https://www.facebook.com/KidsForeverGold
And this month is September. So this post just a little warning. See September is an important month for me. It marks the beginning of International Childhood Cancer Awareness Month. And as such I will be posting lots of status updates. Lots. So many in fact that I have created this blog.
They will not be pictures of holiday snaps.
They will not be photos of my culinary delights.
They will not me sharing funny stories or jokes.
They will be shocking
They will be distressing
They may make you sad
They may make you angry
They may even make you cry
But I make no apologies whatsoever for this.
You see in September 2014 I was just another mother. We were just another family. Working hard. Preparing for the return to school. Moaning about train delays and laughing at the latest ice bucket challenge. Fast forward 3 years and our lives are forever changed.
Changed through our experience.
Changed through our loss.
My life will never be the same again.
Cancer robbed me of my child and stole Estelle of her sister
And the saddest thing is it could be you; your child, your niece or nephew, your cousin, your sibling or your friend. My posts are there to build awareness and increase knowledge. My posts are there to educate and inform. To hopefully save lives. And we could just save one child…so no apologies.
So please, read my posts this month
Share them
Act on them
Don’t our our kids deserve just that?
I know it’s what I want and it’s certainly what Georgia dreamt of.
Charity? What do you think of when you think of charity?
Volunteers shaking buckets at the station?
Sponsorship forms for the latest “-athon” that the school is adopting?
Perhaps you think of Children in Need or Comic Relief?
But I was always a watcher. It was always for someone else – not me?
How could it be? I’m not sick. I am not poor. I am not lonely or depressed.
Sure I have challenges - who doesn’t? But I was always taught to be strong and self reliant.
I didn’t need charity.
Then boom - with one word my world changed.
And all those preconceptions fly out of the window.
Suddenly I am that person. My child is in need. The pictures of a smiling child with a bald head don’t belong to someone else. They are my photos. That is my baby girl.
Suddenly the list of charities that you become reliant on, sometimes without even knowing, multiplies until you can’t even think which one means more.
Suddenly you are assigned a social worker. A social worker? Isn’t that for someone with real problems? Like domestic violence or abuse; poverty; addiction… not me, not us.
Yet, there I am sitting in a room; staring at a benefits form – wondering how did I get here?
But here is where I am and, when I consider the role that charity has played in just 1 year of my life, and continues to play – how could I just sit on the side lines and watch?
Added to this is the realisation that our charities this year are cancer ones.
It really is a no-brainer.
I owe charity my life, for although, my Georgia’s life was tragically cut short;
Without charity, I may not have survived.
I hope that I can bring my passion to the committee and my insight in this particular topic, helping to build awareness and raise vital funds towards to help others.
Here is a list of the charities that touched us, and to whom we owe the world:
A Child of Mind Bereavement support
Anthony Nolan Stem cell donation
Bandana For the Brave Head-wear for Georgia
Be Child Cancer Aware Awareness and support to End of Treatment Bells & Beads of Courage
Beads of Courage Programme for children with chronic illness
Bloodwise Blood cancer charity providing vital information & ground-breaking research
Cancer Research UK Kids & Teens Trial drug and research support
Childhood Cancer & Leukaemia Group Information for patient, siblings, friends & school
Children with Cancer Hospice support and research
CLIC Sargent Social welfare; Financial aid; Play specialists; Bereavement support
Cyclists Fighting Cancer Cycles for cancer patients
Delete Blood Cancer UK Stem cell donation
Emily Ash Trust Pamper Evening; Build A Bear Party; Bereavement Support
End of treatment bells Funding to support the programme in UK
Jigsaw4U Bereavement support
Leukaemia Care Blood cancer charity providing vital information on the disease and treatment
Little Princess Trust Provide real hair wigs
Macmillan Cancer Support Information on every treatment and drug
Make a Wish Granting wishes to seriously ill children
Merton Community Transport Ambulance transport
Momentum Parental and patient support; character visits; bereavement support
Nationwide Association of Blood Bikes Emergency transport for blood provision
Rainbow Trust Children’s Charity Emotional and practical support for parents, patients & siblings
Rays of Sunshine Granting wishes to seriously ill children
Samuel’s Children Charity Accuveins – handheld scanners that show where the veins are so injections are done first time and with little pain. Free WiFi & entertainment equipment including TV and DVD’s at St. George’s Hospital, craft and sensory equipment; Electric ride-in cars – Estelle LOVED to drive them on the ward when Georgia was inpatient; Sofa beds at St. George’s so we could sleep in her room
Shooting Stars Chase Hospice care and bereavement support
St. George’s Hospital Medical care, support services, bereavement support, PICU (they saved her life 3 times)
St. John’s Ambulance Medical ambulance transport
Starlight Foundation Hospital entertainment; granting wishes
The Royal Mardsen Hospital Medical care, support services, bereavement support, & our “home” for most of 2015
Theodora Children’s Charity Bring music, magic, fun and laughter to the hospital through visits from Giggle Doctors.
