Age when Peter was diagnosed: 4 years old

Type of cancer:           B-Cell Acute Lymphoblastic Leukaemia

Treatment received:    Peter is taking part in an international research trial (called ALLTogether-1). His treatment was incredibly intense for the first 6 months and required lots of hospital admissions. He is now in maintenance which means he has chemotherapy both daily and weekly, as well as several different medications to help prevent infections and to minimise side effects. He will complete treatment in March 2024.

Siblings:                      Peter has an older sister called Sarah who is 10 years old

The affect on siblings:

Sarah finds it extremely difficult that her brother gets given toys and gifts quite often (hospital trips, on days out, ward organised activities etc.) and she feels left out. Then she feels guilty for being jealous. On top of that she’s worried about her brother, she’s scared about the medical procedures he has to go through and she’s worried every time he gets an infection.

She often has to have plans changed last minute or we can’t go somewhere that she likes because he can’t go there. When she’s doing something like a school play or a choir performance she can only have one parent there at a time, so that one can stay with her brother and sometimes she gets picked up from school by a grandparent when she’s been expecting it to be Mummy.

The affect on family:

The difference has been life changing. Aside from the obvious fears when you hear that your child has cancer, there’s been the unexpected effects such as dealing with the many and varied side effects and knock on effects.

Plans have to change last minute, leaving the house is a military operation, doing something simple like going to school has required months of planning, staff training, care plans, feeding plans and multiple bags to go to school each day.

There’s been a social impact as Sarah and Peter can’t have friends round to play, my husband and I don’t get any time on our own unless the children are in bed. We can’t get a babysitter as anyone who cares for him requires specialist training. Financially the impact has been huge as I’ve had to leave my job to care for him so now I work part time on a self-employed basis which has its own challenges. 

 The difference psychological support would make:

It would make the world of difference. Having someone specially trained to support us as a family would be incredible.

As a family, our psychological needs are quite varied. We’ve got the stress of having a seriously ill child, the jealousy between siblings, Peter has medical trauma to deal with (fortnightly blood tests, monthly port access and 12 weekly NG tube changes) as well as the feelings of missing out and not being “the same as everyone else”. This kind of support for families is incredibly important so it’s very unfair that it’s a postcode lottery on whether you receive it or not.

Being told your child has a life threatening illness is completely earth shattering, to then have to deal with the psychological fall out of that by yourself is virtually impossible.