Here is some insight into why I’m running this campaign and how awareness can help to make a difference. I am gobsmacked that the Masterclass sold over 300 tickets in 36 hours – It really does go to show how close this cause is to all of our hearts.
I am still getting offers for spot prizes, goody bag items and sponsorship – Please get in touch with me to help me reach my € 50,000 goal ! We are almost half way there already!
I was honoured to receive this letter and information from a family friend faced with Childhood Cancer. Please read it to the end and you will see how we can all make a difference !
Thank you Alan & Sinead, I can’t wait to meet you Beany (my hero)
Lv MRS <3
Dear Michelle (Mrs. Makeup)
I know you have followed with interest our tortuous journey with Beany through your friendship with her aunty over the last 16 months. I also know from our conversations recently that her story this was a big factor in your amazing choice to run an event in aid of childhood cancer. So I thought I’d share with you followers some of her story.
On Friday the 16th of October I was eating lunch with some colleagues I got a call from My wife. She wanted me to come to the children’s hospital Beany was attending for a follow up on brief and seemingly mundane illness. It was there at 5 pm that our world was turned upside down when we were told that our little 4 year old ball of energy had suspected neuroblastoma. We were put in a taxi and sent directly to the specialist paediatric oncology unit St. John’s in Crumlin.
That weekend, under the care of an expert paediatric oncology team in Crumlin we got a full diagnosis. We quickly learned that Neurobalstoma is a childhood cancer of the sympathetic nervous system. It has an occurrence of 5 in a million. It is referred to as the “Enigmatic Tumour”. This is because it is not only a solid tumour but a cancer of the blood, bones and bone marrow. In some cases it spontaneously regresses, however, in the majority of cases is viciously proliferates in the patients system without obvious side effects and as such the majority of children present with late stage and high risk Neuroblastoma. In Beany’s case she was diagnosed with stage IV High Risk Neuroblastoma. The tumour was large and originated on her right adrenal gland. The cancer had spread from this point of origin and was present in 100 % of her bone marrow, bones and it had spread to some of her organs.
Beany immediately began a long course of treatment aimed at stopping the cancer, eliminating the source and preventing reoccurrence. In the past almost 500 days Beany has undergone a massive amount of treatment. Starting with a surgery to biopsy the tumour and correctly understand the genetics and size of the tumour to aid diagnosis and select treatment. In truth the treatment has been so complex it is impossible to describe in total. She spent 8 months on induction chemotherapy. For children with Neuroblastoma some of the oldest and most toxic drugs in cancer treatment are used. This means they suffer very difficult side effects. She has also had 55 blood transfusions as her body struggles to generate enough healthy blood during the periods between treatments to keep it running as a normal child’s body would.
After induction chemotherapy she underwent a massive life threatening surgery to remove the primary tumour. The battler she is, she recovers from this and was home in 72 hrs much to the awe of the medical and surgical teams. After a few weeks of recovery (and a dose of chicken pox) Surgery was followed by another phase of treatment. Beany went into lock down. For almost 7 weeks she was in the isolation unit in Crumlin as she underwent high dose chemotherapy and stem cell transplant. Around this period 7 kids lost their battle with cancer ( of various types) in 30 days it was a terrible time for anyone associated with kids cancer.
The next step was radiation for 3 weeks she climbed daily onto the machine in St Luke’s with no complaints and no anaesthetic (massive achievement for a then 4 yo) to tackle the final base of the tumour. Following this we got the news we had been waiting for she had no evidence of disease in her body. it felt like a noose was taken from around our necks.
However, treatment didn’t stop there. In November Beany started on a cutting edge clinical trial in Crumlin which uses an antibody to hunt down any remaining cells in the body in the hope of preventing a return in the future. This will continue for several more months and brings with it a lot of risk and lots of suffering for her.
Throughout she has been an inspiration to all around her. She maintains her personality. Is not angry, is not mean and has gone from a scared little girl in constant pain to a warrior fighting cancer and meeting every demand the medical team put on her. True she is sick but during the times when she is playing with the kids in hospital, telling nurses stories about her brother and sister or even when she gets enough energy to go to school, she is just herself.
Throughout it all, we have found support in the other families of children suffering from cancers of various types in St. John’s ward. Her oncologist, her medical team, the nurses, the house staff and the play specialists have been as vital to her well being as the medication. We could not ask for a more dedicated team.
It has been a tough 500 days and we could not have got through this without those who have supported us. However, the main thing that keeps us going is the desire to match the tenacity and courage displayed by Beany.
Which bring us to you Michelle. Your event will be a huge benefit to children’s cancer in Ireland. I am very impressed by your approach. In times when charity fraud and questionable finances are common place you have done your research. Of the charities we discussed you have selected a perfect combination of reputable charities run by people of high integrity.
Firstly Childhood Cancer Foundation – this group looks after any family fighting childhood cancer. They provide the “bead of courage” programme which is instrumental in helping kids process the trauma of treatment. Each medical procedure they undergo they receive a bead which allows them to track and talk about their journey. Beany has currently 1500 beads and gathers more every day. Think about it that more than 3 procedures a day… CCF also work tirelessly to further the cause of childhood cancer on a national and international level.
Secondly – The Conor Foley Neuroblastoma Research Foundation. This group headed by the bereaved parents of a Neuroblastoma patient a looking at funding research into less toxic and more effective treatments for kids and have made good partnerships with key individuals in the oncology and research communities.
It is with great enthusiasm I look forward to your event and the opportunity to talk to your attendees. You are making a real difference. And Beany is looking forward to meeting you in the interim. While not everyone is in a position like Michelle to run a major event ther is something anyone can do to help. One very practical thing and that is to donate blood. That will help beany and all the kids who are battling cancer in St. John’s in ways I could not begin to describe.
Alan
