The Big Questions
13/09/2018
You just do. One day at a time. Sometimes I fall apart. I cry, I shout. I get angry and sad and everything in-between. Some days I feel completely overwhelmed just trying to get through the day. Then I carry on, because he’s my son and I don’t have a choice. I’m not brave, or inspirational, I’m just a mum. I know anyone would do the same. Maybe we don’t realise how strong we are until being strong is the only option we have.
After three years of treatment, I suspect many people are a bit lost with Hugo’s illness and treatment. Here are some of the questions I have been asked and a few others that I thought people might want answers to.
Do you mind talking about it?
Probably a good one to start with! No, not at all. He’s my son, this is our life, I’m always grateful if people take the time to ask after him or try to understand his condition and our life a little better. So ask away!
Does he still have leukaemia?
Strictly speaking, no. Most patients with Hugo’s type of leukaemia (Acute Lymphoblastic Leukaemia – ALL) will reach a level of remission after just 4 weeks of treatment. However, if treatment were to stop at that point, the leukaemia would definitely come back. Treatment continues beyond that point to make sure every single leukaemic cell has gone (even the really sneaky ones!) and to teach the bone marrow how to function properly again. He is still considered to be in ‘active treatment’. We will count his ‘days in remission’ from his end of treatment date.
Why is treatment longer for boys than girls?
Boys risk the leukaemia retuning in their testes so their treatment plan is 12 months longer than girls.
Can it come back after treatment has finished?
Yes, up to a quarter of children with ALL will relapse. The likelihood of relapse decreases the further out of treatment a patient is. Relapsed ALL is more resistant to treatment, but is treatable. Patients are also more at risk of developing other types of cancer.
The fear of relapse has been very real and I know it will continue to be so. Sometimes I am convinced it will come back, that it’s just a matter of time. Other times I am able to be more optimistic. I am hoping that as time goes by the fear will lessen.
The fear of relapse has been very real and I know it will continue to be so. Sometimes I am convinced it will come back, that it’s just a matter of time. Other times I am able to be more optimistic. I am hoping that as time goes by the fear will lessen.
What is Leukaemia?
Leukaemia is a cancer of the white blood cells. Acute lymphoblastic leukaemia is an overproduction of immature lymphoid cells (one of the types of white blood cells). Normally these cells, which are produced in the bone marrow, repair and reproduce themselves in an orderly and controlled way. In leukaemia, however, the process gets out of control and the cells continue to divided but do not mature. Immature cells fill up the bone marrow and stop it making healthy blood cells.
Will his walking and other side effects improve when treatment ends?
That is the hope, yes. Hopefully once the medication stops it will allow his body to recover and catch up to where it should be. Unfortunately many patients suffer with long term side effects after their treatment ends, so it is definitely a watch and wait (and cross fingers) situation.
Will all medication stop at the end of treatment?
All chemotherapy and steroids will stop on his last day of treatment. Some of his other medications will continue for a while afterwards, but hopefully not for too long.
How did you know he had leukaemia?
I get asked this one a lot (and no, I don’t mind).
Hugo’s first symptom was a refusal to bear weight on one of his legs. Over the next few weeks he developed viral like symptoms that gradually got worse and didn’t disappear. He was tired, pale, he lost his appetite and his glands were swollen. He had a hip x-ray and was diagnosed firstly with irritable hip syndrome, then a virus, before a blood test (as part of a paediatric referral) showed he had leukaemia. From his first symptom to diagnosis was about 5 weeks. He was diagnosed on 13 July 2015 aged 2 years and 4 months.
When does treatment end? When will he ring the bell?
When does treatment end? When will he ring the bell?
18 September 2018. He will ring the bell when his port-a-cath (bumpy) is removed, which is due to be on 7 November.
I don’t know how you cope
More a statement than a question, but people say it a fair bit.
You just do. One day at a time. Sometimes I fall apart. I cry, I shout. I get angry and sad and everything in-between. Some days I feel completely overwhelmed just trying to get through the day. Then I carry on, because he’s my son and I don’t have a choice. I’m not brave, or inspirational, I’m just a mum. I know anyone would do the same. Maybe we don’t realise how strong we are until being strong is the only option we have.
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