Olivia Marna Holmes was born in January 2006 and had a normal childhood life until the 24th July 2009 when her life was turned upside down as she was diagnosed with a PNET Ewing Sarcoma to her lower spine “Cancer”.
Prior to diagnosis time and time again Olivia kept presenting with a urine infection which with antibiotics cleared up, she then started to complain of severe leg pains to the point where she would not settle at night which then developed into a limp to her right leg eventually resulting in not walking. She lost her appetite and then refused to eat any foods including sweeties, but time after time we were told by GP’s not to worry she was just being a fussy toddler.
Then one evening she developed what only can be described as a flashing rash across her buttocks and down her legs, we then took her to the out of hours doctor who said she needed to be referred to Paediatrics at Torbay Hospital. The next morning she was seen at the hospital and after several tests they ruled out the urine infections and classed them as a red herring, they then performed a ultrasound to her abdomen to discover a mass the size of a cricket ball in her pelvis area.
Olivia was then transferred immediately to the Bristol Royal Children’s Hospital for a week of further scans, x-rays and other tests one being a biopsy to the mass resulting in being diagnosed with a cancer which was no longer the size of a cricket ball but the size of a small football. We then started our journey into the world of Chemotherapy.
Olivia was transferred onto the special Oncology Ward where she received her 1st round of chemotherapy (VIDE Mix) – nothing can prepare you for what is involved. Olivia’s rollercoaster had begun, during this time as parents we had to juggle our time looking after Olivia and our 1 ½ year old son Henry, in a way it was good he was so young as he just played, ate and slept through the process.
Olivia became very poorly very quickly on the chemotherapy drugs and she lost all confidence in the doctors and nurses and wouldn’t speak. Only through me would she communicate and sometimes that was even challenged. It felt like our little girl was disappearing and the once sparkle (smile) in her eyes was leaving us with just an empty shell. After her initial chemotherapy Olivia was transferred to our local hospital The Royal Devon & Exeter (Wonford) where she would finish the other courses of treatment. A couple of days after being transferred we hit another stumbling block Olivia’s dad had suspected swine flu and Olivia was transferred into HDU away from everyone where she met her new consultants for the first time all gowned and masked up. As you can imagine this did not go down well. My little girl was frightened beyond all belief.
In HDU Olivia developed extreme mucositis and to top it all her hair started to fall out which no one can prepare you for. That night with the help of a very kind nurse we gave Olivia a pixie haircut to help her with the transition. Due to her mucositis Olivia could not eat or drink and was put on TPN (Total Parenteral Nutrition) which was administered intravenously direct into her vein via her Hickman line.
After being told that the treatment would be for a year, some parents that we met had quit working and sold their house to live at or near the hospital during the treatment. We knew that as soon as day four of the chemo had finished we would come home and then the real struggle would begin. We would have 12 days of an experience which we knew would repeat itself time and time again every three weeks for a year.
At first Olivia would be a bit sick, but by keeping her fluids up and hourly monitoring of the liquid food intake through a nasal gastric tube at night we could just keep our heads above water until the sickness finished. We would get about three or four good days when she wasn’t sick before going back into hospital for the next round.
Olivia lost weight dramatically as a result of the chemotherapy that she had and although anti-sickness drugs were provided it wasn’t until after about 10 months of treatment we started to work out which drug combination worked best for her sickness.
At her lightest Olivia was just over 10kgs on her fourth birthday January 2010 (Some seven kilos and 40% lighter than her weight at diagnosis). There was some uncertainty as to whether she would survive from one day to the next by this point as no amount of liquid food could be kept down.
Despite her weight Olivia went into surgery on 27th January 2010. It was predicted to take about 8-9 hours. 16 hours later and after losing her once on the operating table she survived the ordeal. She had part of her spine removed and replaced with a metal cage and rods and bolts supporting her spine and most importantly the tumour removed as much as possible.
We were told that there was a high risk she would never walk again. One week later Olivia proved to everyone she was a strong little girl by walking, then climbing stairs followed by being discharged from hospital.
Two weeks later Olivia began her maintenance chemotherapy followed by 7 weeks of radiotherapy to her spine.
Olivia eventually finished treatment end of June 2010 and went into remission where she remains today.
Olivia has reviews at the hospital every 3 months to make sure no other tumours have decided to raise their ugly heads.
Due to all the radiotherapy and chemotherapy Olivia has had to her pelvis area, she now has ongoing problems with her kidneys, her appetite has never returned and is now fed by a gastrostomy tube into her stomach at night.
But you know what she still smiles !!!!
Written by Lisa Holmes