In December 2018, our lives took a sudden and heartbreaking turn when our 3-year-old son, Gaspard, was diagnosed with a very rare and aggressive form of cancer called Rhabdomyosarcoma.
We will never forget that dark Tuesday afternoon at London’s Great Ormond Street Hospital when we were given the diagnosis.
No parents are ready to hear that their child has cancer.
During the prior few weeks, Gaspard has been feeling tired, not quite himself. His lack of appetite and constipation led us to visit a GP. Constipation was confirmed and we started a treatment but things got worse. Gaspard started crying at night, complaining about leg pain.
The night of December 17th will stay in our minds forever. Gaspard's tummy become so protuberant, we rushed him to Chelsea Hospital and from blood tests to scans, we were brought to the little parents room you never wished to enter.
Gaspard has cancer, prostate / bladder Rhabdomyosarcoma, stage 3.
We were rushed to Great Ormond Street and the worse had yet to come as Gaspard's condition was deteriorating. His belly was so swollen, he could barely breathe properly. The tumour was actually so large that it was blocking most of his vital organs. He had to have 2 nephrostomies placed to drain his kidneys, a catheter to drain his bladder and a stoma bag to drain his bowel.
On the 27th of December, he started chemotherapy. We stayed in hospital for almost 7 weeks, taking turn between with husband so that one of us could be with our two other children.
From January to June, Gaspard did 6 cyles of intense frontline chemotherapy including 9 weeks of proton beam radiotherapy in Jacksonville, Florida, USA.
Gaspard is now done with the frontline treatment and this summer has started maintenance chemotherapy for 6 cycles.
Today, he is on his 5th cycle, and we are in discussions about adding another 6 months of maintenance given his high risk of relapse.
- 11 cycles of chemotherapy
- 28 proton beam radiotherapy
- 11 surgeries
- 1 bone marrow biopsy
- 49 general anesthetics
- more than 100 nights at hospital
- more than 40 scans, MRI and x ray
- 4 blood transfusions
- 3 severe infections (one of which was sepsis that nearly claimed his life)
- one testicle preservation
- hair and weight loss
- countless physiotherapy sessions to re-teach him how to walk
During this past 12 months,
Gaspard went through:
Gaspard ended his treatment the 05/07 after 19 months of intense treatment.
His scans are good. Tumour shrank from 10x11 cms initially to less than 2cm and the pet scan confirmed the tumour is now inactive and only scar tissue.
We could not be more happy about the results.
Gaspard will be closely monitored over the next 5 years (scan every 3 months) and will go through intense physiotherapy for his legs.
Despite the fact that Rhabdomyosarcoma responds very well to chemotherapy, the risk of relapse remains high and the survival rate should that happen is extremely low.
During our journey we got to know the world of pediatric oncology well and its sad realities, the most appalling of which being the inexplicable lack of research funding.
Most pediatric cancers are extremely rare diseases which do not financially justify any investments in research. These diseases are largely ignored by the pharmaceutical industry and receive only 4% of government oncology research grants.
In the past 30 years only 3 drugs have been approved that were specifically developed to treat children with cancer.
This is unacceptable and we cannot let these children down.
We have decided through Hope with Gaspard to dedicate a part of our lives to support research, and the children and families affected by cancer.
In order to help these children, we need all the support we can get.
Together and united, we are stronger.
Thank you from the bottom of our hearts for supporting us and joining us in this cause.
This is the logo that will represent our fundraising work.
Why a tiger ? Because this is our son’s favourite animal and because our son is a fighter and with his support we will carry our fundraising work until we can find better treatments and a cure for this disease that kills so many children every year.
We won’t give up and we need all of you.
I would like to thank BBH team and their creative team for their help in finding a brand name and thank Third Bridge creative team for having created this very cute logo.
Gaspard’s tiger is still roaring today as he continues his fight with cancer.
Will you join with Gaspard in his hope for a world where children do not have to
Help him make his hope a reality and other children like him roar louder than ever.
We will stand, We will fight !