As it is Childhood Cancer Awareness Month & Blood Cancer Awareness Month, I thought I’d do an A to Z on childhood cancer. This won’t be exhaustive as I’m only going to highlight one thing per letter of the alphabet but I hope that it will raise awareness of what life is like for a family living with a childhood cancer diagnosis.
For further information, Macmillan has a much more detailed A to Z.
The items I have included in my A to Z are things that have directly affected us. These are the drugs, procedures, tools and side effects that we as a family have experienced in just 7 months since the Dinosaur was diagnosed with Acute Lymphoblastic Leukaemia.
A – Anaemia.
Children with cancer, particularly those with leukaemia, will most likely have anaemia as well.
Anaemia can be caused by cancer itself affecting the production of red blood cells or by the chemotherapy slowing down red blood cell production.
B – Blasts
The name for immature blood cells that overtake the bone marrow in a person with leukaemia.
C – Cytarabine
A chemotherapy drug (approved for use in the UK in 1969). It is administered intravenously through the central line.
D – Doxorubicin
A chemotherapy drug (approved for use in the UK in 1974). It is administered intravenously through the central line. The second dose of this made the Dinosaur lose his hair.
E – ECG
A test to check the electrical activity of the heart. Some chemotherapy drugs cause damage to the heart so an ECG is often carried out before, during and after treatment.
F – Full Blood Count
A full blood count is often part of the diagnosis of cancer, particularly leukaemia. During treatment, a weekly blood test is usually required to monitor the effects of chemotherapy and to test for infection and secondary illnesses.
G – Grants
A diagnosis of childhood cancer can place an extraordinary financial burden on a family. There are a number of charities that issue financial assistance grants to help families pay for things like fuel, clothing, food and other essentials. You can read about the charities that have helped us here.
H – Healthy Eating
Healthy eating during chemotherapy is very different to healthy eating in normal life. As chemotherapy can seriously affect the appetite and sense of taste, any eating is considered healthy. Some people struggle with eating so much that they need to be tube fed.
I – Intrathecal
An injection into the spinal fluid. In leukaemia patients, this is done regularly via a lumbar puncture and chemotherapy called methotrexate is administered. This is to prevent the leukaemia cells from damaging the brain.
J – Jabs
Treatment for cancer destroys any protection given by childhood vaccinations. Once treatment is complete, these will all need to be repeated.
K – Key People
There will be many people involved in the care and treatment of a child with cancer: nurses, doctors, healthcare assistants, play therapists, hospital teachers, social workers, anaesthesiologists, lab technicians, radiographers and many more.
L – Leukaemia
There are 4 main types of leukaemia:
ALL – Acute Lymphoblastic Leukaemia
AML – Acute Myeloid Leukaemia
CLL – Chronic Lymphocytic Leukaemia
CML – Chronic Myeloid Leukaemia
M – Methotrexate (MTX) & Mercaptopurine (6MP)
Chemotherapy drugs (both approved for UK use in adults in 1953).
6MP is administered orally or via a feeding tube.
MTX is administered intrathecally (injection via lumbar puncture into the spinal fluid), orally or via feeding tube and intravenously.
N – Neutropenia
A low level of neutrophils (a type of white blood cell) in the blood.
Someone who is neutropenic is at far greater risk of infection and will need to take extra precautions to prevent infection.
O – Oral Care
People undergoing chemotherapy need to take extra care of their mouths and teeth as mucositis (inflammation of the mouth and gut) is a side effect.
Ulcers are common so antacids may be taken to counteract this.
P – Portacath
A type of central line that can be left in place long term.
A small port is placed under the skin and a catheter is passed into a vein close to the heart.
It is used to administer medication or fluids and to take blood.
Q – Questions
A cancer diagnosis is bound to cause an avalanche of questions (for the patient, the parents, the friends, caregivers/colleagues etc.)
If you are the patient or parent, keep a note of your questions and ask them as you go
R – Remission & Relapse
Remission is when there are no longer any signs of cancer cells. This is what we all hope to get to and remain at.
Relapse is when the cancer comes back. This is what we all fear. This is what we all fear for the rest of our lives.
S – Steroids
Steroids are often used in cancer treatment.
The main side effects are an insatiable appetite and an uncontrollable rage.
T – Tube feeding
Chemotherapy can cause the appetite to become severely suppressed and can also alter the way foods taste.
Sometimes people will need to be fed via a tube while they are going through chemotherapy.
U – UV
Chemotherapy can cause the skin to be much more sensitive to damage from UV light.
It is important to wear factor 50 suncream with a 5* UVB rating, to keep covered up, stay in the shade and wear a hat all year round even in the UK.
V – Vincristine
A chemotherapy drug (licenced for use in adults in the UK in 1963).
It is administered via a drip in the hospital.
W – Weight
Weight changes are common during cancer treatment.
Weight gain often occurs during steroid use and weight loss often occurs as the appetite becomes suppressed.
X – X-Ray
X-Rays may be used during cancer treatment to check the lungs for fluid which can be a sign of infection, to see tumours or to check the placement of things like NG tubes or central lines.
Y – You
If you are caring for someone who has cancer, it can be very easy to neglect your own needs.
It’s important to take care of yourself physically, mentally and emotionally so that you can provide better care for your loved one.
Z – Zigs & Zags
Life with cancer is filled with zigs and zags, one minute you’re living as normal a life as possible and the next you’re heading to the hospital unexpectedly due to a temperature spike.
Life with cancer is NEVER ‘normal’ and straightforward. There are always extra considerations to be made before the simplest activity can be undertaken.