Week two: by guest blogger, Dr Phil. Throughout Childhood Cancer Awareness Month Dr Phil shares her weekly Doctor's Diary, focusing on the different stages of a child's cancer diagnosis. This week, she looks at treatment.
28th July 2006
Happy birthday? Having a Hickman line (a plastic tube inserted into the chest wall for access into a vein), bone marrow aspirate and lumbar puncture on your birthday didn’t feel like something to be happy about.
Our son was diagnosed with acute lymphoblastic leukaemia two days before his 14th birthday. He was to start his chemotherapy in addition to opening his presents. He had been starved most of the day but really fancied a pizza in the evening so that was delivered to the ward. Unfortunately, most of it was vomited back later (probably a result of drugs given during the general anaesthetic).
Over the past few days he received a cocktail of chemotherapy drugs including a bright red fluid that dripped in slowly through his intravenous line, in addition to oral steroid tablets, and painful intra-muscular injections. He coped remarkably well, always smiling at the nurses, even though he felt afraid and nauseous. He had a bad reaction to one of the anti-sickness drugs but luckily there were alternatives that helped reduce this side effect.
(Our son) coped remarkably well, always smiling at the nurses, even though he felt afraid and nauseous...We were offered counseling but the best way of coping for our son was to see his friends briefly and concentrate on his play station.
His white blood cell count was dropping each day, the best news we could get. We were allowed to go home which was partly because we (his parents) are both doctors, so we felt confident to do this. We also lived only five minutes away from the hospital so it meant the daily trips for treatment were manageable, one of the advantages of living in a city that was one of the 21 children’s cancer centres in the UK.
Of course we checked on him constantly at home, even nipping in throughout the night whilst he slept soundly.
His bone marrow test done earlier that day showed the treatment was working. The cancer cells were down from 90% to less than 10.We sat outside in the garden as the steroid tablets were making him feel really agitated and he wanted us to cuddle him outside in the fresh air. He was also prescribed tablets to counter this effect.
We were however feeling relieved that his bone marrow test done earlier that day showed the treatment was working. The cancer cells were down from 90% to less than 10%.
Two weeks into treatment and as feared but anticipated his lovely thick brown hair was starting to be visible in clumps on his pillow. This really upset his 16 year old sister, as it was all becoming so real. Also, his appetite was increased due to the steroid treatment so his face looked a little rounder to us. He was becoming more withdrawn, and reluctant to see his friends as the treatment started to cause more visible side effects.
I tried to read the booklets given to us by the ward and the leaflets that explained the seemingly complicated chemotherapy regime, but what I really wanted to know was how did other parents and families’ cope? Was he going to be okay? The statistics sounded favourable for his type of leukaemia with cure rates of nearly 90 % quoted to us.
A question that always niggled at me though was would he be in that unlucky 10%?
Back in the 1960s, a child diagnosed with acute lymphoblastic leukaemia (ALL) would not survive, now the UK has the best results for cure in the world.It didn’t matter having a medical background we were now one of the statistics; one of the 3,600 families that have a child or your person diagnosed with cancer every year in the UK.
Families maybe asked to consider entering their child onto a treatment trial, as we were. Most families are altruistic and do this so that treatment regimes can be modified and improved. This means in the future there will be better survival rates but will also ensure children do not receive too much treatment, which in itself can be dangerous.
Back in the 1960s, a child diagnosed with acute lymphoblastic leukaemia (ALL) would not survive, now the UK has the best results for cure in the world. The latest ALL trial uses a technique developed by researchers who were funded by Children with Cancer UK. This is called MRD (minimal residual disease) and is a genetic technique to detect very low levels of leukaemia, so that treatment schedules can be tailored to the child.
This means that some children can receive less treatment, thereby avoiding immediate and long term side effects.
Read more: Childhood Cancer Awareness Month | Patient stories | About childhood cancer | Cancer treatments