I knew something wasn’t right
At the end of November 2018, our three-year-old son Gaspard, was getting constipated and complaining about tummy pain. We thought it was just constipation and we went to the GP early December, who gave him treatment.
During the next few weeks, it got worse. Gaspard was not eating anymore, became very pale and tired and was waking up at night complaining that one of his legs hurt badly.
We were due to go on holiday for Christmas but I knew something wasn’t right with Gaspard. He was not the happy little boy he used to be, no longer smiling and not being himself. To ease my worries and know that it would take time to see a specialist through the NHS, I took him to a private gastro specialist who did a scan.
The scan revealed a very large, 10cm tumour in Gaspard’s pelvis area and following a biopsy, he was diagnosed with stage 3 rhabdomyosarcoma of the prostate/bladder with lymph nodes involvement.
Gaspard stayed in hospital for almost two months and his condition deteriorated very quickly.
Gaspard’s tumour was blocking every organ and he had to have an urgent colostomy to drain his bowels, two nephrostomies to drain both his kidneys and a catheter to drain his bladder. An NG tube was inserted so that he could be fed and a Hickman was inserted.
Gaspard spent a lot of time at hospital at the beginning as he was very poorly. When he was ready to go home, a cycle of chemotherapy involved weekly outpatient infusion and four to five nights as an inpatient every three weeks. We were staying around one week as an inpatient every month and every time he had a fever or a blood transfusion was needed.
Fortunately, we were 30 minutes away from our local hospital so my husband and I could take turns looking after our other two children and being with Gaspard at hospital.
Our two daughters (six and one at the time) spent a lot of time in hospital during the first two months as they wanted to be close to their brother. We had a lot of visits from our family and friends and our families flew from France where we are from to help us with the children.
Our employers were very supportive and understanding. We both stopped working as the first two months Gaspard was at hospital days and nights and they gave us time with no pressure to come back.
Proton beam therapy
From December to February we stayed in the hospital and back and forth between home and hospital for a month after.
In March we left for Florida to receive proton beam therapy for nine weeks. We all went together as a family and home schooled our eldest daughter for two months. The school was very supportive and gave us a program to follow and we reported back weekly on her work. We were also caring for Gaspard’s little sister who was a year and a half at the time.
Gaspard was under general anaesthetic every day for the 28 days of his proton therapy. During our stay in the US, he also received three cycles of chemotherapy and had to say as an inpatient for three to four nights.
Disruption to our daily lives
From December 2018 to May 2019, my husband and I did not go to work and we balanced our time between our girls, school, working a little bit from home, treatment and hospital stays. Gaspard wasn’t able to go to school during this time.
In May, we decided that my husband would return to work part time and Gaspard went to school a few hours per week so he could get a sense of normality. We were not afraid of germs – we wanted him to live a normal life, play with his friends and learn. This was the most important thing for us.
Where we are today
Gaspard is now on maintenance therapy and will continue until August 2020 if his body can cope.
He is a lot better. He’s walking again, his appetite is better and his NG tube has been removed. He also had surgery last July to remove his stoma bag. He has been back at school full time since September and having blood tests twice a week so he can continue his chemotherapy. He is having physiotherapy 3-4 times a week to regain strength in his legs.
He is also receiving chemotherapy infusions at hospital every two weeks and takes daily chemotherapy at home. Gaspard’s tumour has shrunk significantly from 10 to two cm and is stable, but as our consultant said to us, only time will tell.
Gaspard’s cancer has a high risk of relapse, but we remain hopeful
Gaspard’s cancer and stage means he has a high risk of relapse and if he were to relapse, the chances of survival are very low. However, he is doing so well and we feel positive. He will have quarterly MRI and chest x rays until he reaches the five years post treatment mark.
For the past two months, we have begun to return to living a normal life. We embrace every day of this new chapter, hoping and praying that this ordeal is behind us. We feel very lucky that Gaspard had a chance to fight his cancer and we are very proud parents as Gaspard has never stopped smiling during all his pain and suffering.
If all goes well, Gaspard will ring the end of treatment bell in August 2020.
My husband and I have created a foundation called Hope with Gaspard that supports Alice’s Arc, a UK charity fighting for a cure for rhabdomyosarcoma.
July 2020 update: ringing the end of treatment bell
Gaspard finished his treatment in July after almost 19 months of intensive treatment. Due to the coronavirus pandemic, we were not able to celebrate his end of treatment properly, but he did manage to ring the end of treatment bell in hospital.
The end of treatment is very scary. We feel blessed and lucky that Gaspard is here with us and doing well, but at the same time we are obviously anxious about what the future holds for us. Gaspard still has a high risk of relapse but with time this risk will decrease.
In the meantime, Gaspard will be monitored closely with scans every three months for the next five years. Gaspard will have to wait until after summer to have his port removed and will also have intense physiotherapy as his legs have been affected by the cancer itself and treatment has affected his bones.
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