A FORCE FOR CHANGE
When Aoife’s Bubbles contacted The Institute of Cancer Research (ICR), we happily decided to collaborate.
As Aoife’s Mummy, being thrown into the world of childhood cancer, and subsequently losing Aoife to cancer so quickly, this totally devastated me.
How in this day and age, can we not easily detect cancer in a child, and then finding it’s a solid tumour cancer, how can the options be so limited?
It is said that 25% of children with cancer do not survive their disease for more than 10 years.
This number needs to change, and the only way to change this terrifying statistic is by researching kinder, targeted treatments. Que, my very nervous first e-mail to Nicola Shaw, the ICR’s Trusts fundraising manager.
In laymen’s terms, not a lot is known about how cancer is made up in children, children are therefore treated with adult designed drugs, which leaves devastating affects on the children they are used upon. This can cause life long and disabling problems for the children. In Aoife’s Bubbles view, survival should mean exactly that – survival with the best possible outcomes all round.
I can’t describe with words what it is like signing chemotherapy consent forms, hearing your child could have a heart attack, they could get a secondary cancer, they could be infertile and that this first line of poison (treatment) might not even work. When you sign those forms, you have no other choice.
When we are considering treatment options for children who are fighting for their life, is this right?
No, it isn’t, we shouldn’t be in a position where we are pumping adult designed drugs into children and babies bodies.
The ICR’s approach is to take a ‘precision medicine approach’.
They are one of the worlds most influential cancer research institutes, I think it’s really important to understand that the ICR is an organisation actively undertaking cancer research. Funds they receive are put to direct use by their world-leading scientists in cutting-edge laboratories and not distributed to other parties.
When I first opened Nicola’s response to what I believe to be a rambling e-mail, I was taken aback with the warmth of her response. I truly felt like Aoife’s voice had been heard and that her story was being listened to, and by such an amazing organisation.
Nicola explained that there was not one specific research project there for germ cell tumors in children, but a research trial, which was new and focused on solid tumours in children was underway.
Germ cell tumours belong to the overall group of solid tumours.
Professor Louis Chesler leads the ICR’s Paediatric Solid Tumour Biology and Therapeutics team. They are working to understand the genetic factors driving each child’s individual cancer, so the treatment can be a lot more targeted with precision medicine. Louis says: ““We want to match each child diagnosed with cancer in the UK to the latest targeted drugs”.
Professor Chesler leads the ICR’s vital contribution to the new eSMART trial. The trial will build on the incredible insight gained from genomic testing, which identifies which cancer-causing genes and mutations are present in a tumour, in order to assess how effectively the personalised treatments selected for each child are working. The use of detailed testing and targeted treatment plans will ensure that children enrolled are more likely to respond positively, as well as sparing them from any unnecessary side effects.
One thing, which really stood in Nicola’s response, was that the ICR is urging the NHS to dramatically scale up access to genetic sequencing for children.
We are all aware of this being readily available for adults; it should absolutely be available for children, especially when frontline treatment hasn’t worked and the child has relapsed. This will undoubtedly give children a better chance to have their very own chance of survival.
So, what is Aoife’s Bubbles doing?
We decided here at Aoife’s Bubbles that we wanted to start funding viable and tangible research for children. A promise was made to Aoife about her story saving lives, and we have come to realise that Aoife’s legacy is now offering the opportunity to help fund such vital research, so we decided now was the time to act.
Time isn’t standing still and children with cancer are suffering. The time to act is now.
The eSMART trial is a safe bet for us.It is in conjunction with “The Innovative Therapies for Children with Cancer Academic Clinical Trials Network” (ITCC), which is an EU wide organization, made up of 50 research hospitals, thus providing a huge pool of expertise to get the best information collated to offer a really good chance of changing the outlook for children with solid tumour types, especially those with relapsed disease.
For the everyday person, I understand this information is all quite overwhelming and actually a bit confusing, however, I don’t want to lose you in all of this.
I am the everyday person, the normal mummy, with the extraordinary little girl Aoife.
For the next Mummy who is facing this journey, I want you to understand what options there are and what Aoife and I are trying to do to help. This is just the beginning of a very exciting relationship with ICR, to continue the fight against children’s cancer together.
If you would like to know more specific information regarding our exciting partnership with the ICR, please do drop us a line or visit https://www.icr.ac.uk/support-us/meet-our-supporters/family-charity-partners/aoife's-bubbles to find out more.