A year and a half ago, on 1 March 2020, our life as a family was shattered by cancer. Our one and only beautiful princess daughter and sister, Toni, was diagnosed with a very rare form of Lymphoblastic Lymphoma, a type of blood cancer, at the young age of 11 years. There was a large tumour in the space between her right lung and heart, with pleural effusion that had collapsed the right lung and was causing her pain and breathlessness.
Doctors at the Royal Marsden Hospital commenced treatment immediately using the treatment protocol for this rare form of blood cancer. Two months into treatment, the protocol was switched to a more intense one following advice from the national cancer medical team, because of the very rare nature of this cancer and the possibility of relapse on the initial type of treatment. The proposed alternative treatment required four months hospital stay for the intense chemotherapy regimen, followed by a bone marrow transplant. The effects of which can be described as gruesome but provide the best outcomes for a cure.
The search for a bone marrow donor started with Toni's brothers and to our utmost delight, we had a perfect match with Tolana. This is sadly not the same positive outcome for many children needing bone marrow transplant. Toni had her bone marrow transplant in October 2020 and after six long weeks of aggressive side effects on top of an emaciated body, following the damaging effects of long intense chemo, we were able to go home where Toni continued to recover well. Toni has since had two lung surgeries and other interventions for various late effects of this cancer and continues to stay strong, positive and recover well from all of them.
The journey is far from over, but we are on an upward and positive trajectory and Toni is looking forward to returning to full time face to face school, after over a year of home-schooling, during which she maintained her love of reading and writing and even started her own YouTube channel vlogging about her cancer journey. None of this would have been achieved without the remarkably skilled minds and hands of teams at Oak Cancer Centre for Children & Young People at the Royal Marsden Hospital, Toni & Guy Ward at Kings Hospital, friends and family on praying knees, and our miraculous Healing Lord and Saviour, Jesus Christ.
Childhood cancer is horrible for EVERY child and EVERY family going through it, FULL STOP! However, through our journey, we couldn't help noticing the sharp contrast in the experience and outcomes for black and minority ethnic people. One of the first shocks we had when we began our cancer journey, following Toni's diagnosis, was the disparity in awareness, representation, access, data, culturally appropriate treatment approaches, to name a few, for black and ethnic minority people compared to the white population. There is no one size that fits all in the resolution of these issues, nevertheless, we can only begin with creating awareness, making it easy for people to talk about their experiences without fear of stigmatisation or abuse, and reaching out to appropriate government agencies and healthcare services to commit to funding towards childhood cancer research and projects as well as implement the changes that improve outcomes for ALL childhood cancer population, but particularly for those most disadvantaged in the black and minority ethnic population.
September is Childhood Cancer Awareness Month and we believe it is good timing and opportunity for us as a family to set up this giant pledge fundraising page in Toni's name, to support Royal Marsden's research work into kinder treatments for childhood cancer. We are discussing with The Royal Marsden projects that specifically improve the access, experience and outcomes for children from black and other ethnic minority heritage. Through Toni's Giant Pledge we hope to raise £100,000 by 2025, when we pray Toni would have reached the five years out of treatment milestone.
Please help us reach our target by either donating or becoming a fundraiser and help support this cause.
Please email us at kidsfestivaluk@gmail.com if you have an idea you would like to discuss with us or would like to support us.
Let us come together and raise money to destroy this beast called cancer and give our children and children all over, the best hope of living joyful lives fulfilling their dreams and life's purpose.
Thank you for your support.
Abiodun, Tochi, Toga, Tolana and Toni
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