Sofia’s Story by her Mom Tina
For her first 14wks of life Sofia seemed very uncomfortable and we took her to the Drs numerous times, each time being told she had reflux and was making the usual grunting noises babies make.
On the 4th October 2012 Sofia started passing blood and was diagnosed with a dairy allergy and severe reflux. She was then under the care of paediatricians and dieticians at Southampton General Hospital.
In November 2012 Sofia had a urine infection and a subsequent two more between November and January.
On the 4th January 2013, Sofia attended a routine outpatients appointment for her dairy allergy. A consultant at the hospital examined her and found a lump on her right side by her kidneys.
The Dr admitted us to hospital immediately and we waited an agonising 8 long hours to have an ultrasound scan of Sofia’s kidneys. At that ultrasound we were told that Sofia had kidney cancer and the tumour was 8cm in size.
This was the worst day of our lives, to be told your baby has the nasty “C” word is the worst thing any parent can ever be told… Our world fell apart.
We then learned that she had a very high BP, that of a teenager and remained in hospital for a week until her BP was under control.
After a week she underwent an operation to have a biopsy of the lump and her kidney and the insertion of a PICC line to administer chemo. She then had 5 weeks of chemotherapy. This made her very poorly and she didn’t eat for those 5 weeks.Two weeks later the biopsy results came back as being a wilms tumour.
Wilms’ tumour is a type of kidney cancer that was named after Dr Max Wilms, who first described it. It’s thought to come from very specialised cells in the embryo known as metanephric blastema. These cells are involved in the development of the child’s kidneys while they’re in the womb. The cells usually disappear at birth, but in many children with Wilms’ tumour, cells called nephrogenic rests can still be found.
On valentines day she underwent major surgery to remove her kidney and tumour. She was in the High Dependency Unit for 4 days and gradually started to get a bit better. She carried on with a further 5wks chemo and remained in hospital following complications from contracting rotavirus and feeding problems for a further x2 months on and off.
Two weeks after surgery we were told that her tumour was stage 1. The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site, which thank God it hadnt. Knowing the particular type and the stage of the cancer helps doctors decide on the most appropriate treatment.
We were then told following surgery that they had found a particular gene on Sofias tumour in its histology. Sofia then underwent blood tests to see if the affected gene was within her blood as well as her tumour. Thankfully the results came back favourable and were only contained to the tumour.
On the 15th April 2013 Sofia had her end of treatment Chest x rays and scans which were shown to be clear. She continues to receive 3 monthly chest x rays and abdominal scans until aged 10yrs to check for cancer.
Sofia is amazing. She is a fighter. She has fought to get here and remains to fight to continue to be with us as a family.