Siobhan’s Story
Siobhan was the second youngest of our 4 children. Siobhan was such a character, really cheeky and funny and loved her baby dolls. She became ill just after her second birthday and following a scan in July 2017 it was found she had a large tumor in her abdomen. Siobhan was rushed to Great Ormond Street and after further scans and tests she was diagnosed with Stage 4 high risk Neuroblastoma at just 2 years and 2 months old. Siobhan passed away on 1st June 2019 with mummy and daddy holding her. She was 4 years and 1 month old.
Following her shocking diagnosis Siobhan immediately underwent treatment including chemotherapy, stem cell harvest, high dose chemotherapy, stem cell transplant, radiotherapy and went into remission. In April 2018 during immunotherapy Siobhan relapsed and did not respond to further treatment. Then along came a new targeted ALK therapy drug and this one initially showed promising results. It allowed her to spend the best part of a year as a “normal” child. She went to nursery and loved every minute!
Whilst undergoing treatment we became aware of an option for a vaccine trial in America and we started fundraising. Siobhan’s journey had touched the hearts of many people and the support was amazing. Sadly, despite raising the funds, Siobhan was not able to go.
Unfortunately Siobhan again became resistant to the targeted treatment and after trying a couple of other treatments, including chemotherapy, targeted radiotherapy and another targeted ALK inhibitor drug, which she suffered some terrible side effects from, the treatment was stopped and she moved onto palliative care.
Siobhan passed away on 1st July 2019 with her mummy and daddy holding her and Nanny and Grandad by her side. Her brother, sister, cousin, aunts and uncles and Godmother had been to say goodbye earlier in the day.
We would like to say thank you to everyone who supported us on Siobhan’s journey including all the medical teams at Barnet General Hospital, Great Ormond Street and UCLH, our local community and people we did not know who came forward to help.
Siobhan took us on such an incredible journey and we entered a world we had no knowledge of before. Childhood cancer impacts not only the child but the whole family. In Siobhan’s honor we would like to utilise the unused funds to assist other families finding themselves on a similar journey.
Our family will never be the same but we can do something to honor Siobhan’s legacy by helping others. We are delighted to have been given the opportunity to join forces with The Arcobaleno Cancer Trust. Arcobaleno were amazingly supportive to us in many ways during Siobhan’s treatment and it is an honor to be working with them.
We look forward to working together with Arcobaleno for fundraising and supporting causes close to all of our hearts.
TOGETHER WE ARE STRONGER THAN CANCER!
Below is a list of the medication that Siobhan received:
Rapid Cojec chemotherapy:
- Carboplatin
- Cisplatin
- Etopiside
- Cyclphosphamide (G-CSF)
Stem cell harvest
High dose chemotherapy:
- Busulfan
- Melphalan
Stem cell transplant
Radiotherapy
Immunotherapy (ch14.18)
Other chemotherapies:
- Cyclophosphamide
- Temozolomide
Targeted therapies:
- ALK inhibitors:
- Ceritinib
- Lorlatinib
- Trametinib