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Starting or returning to school during cancer treatment

We all know that starting school can be a daunting prospect both for the child and for the parents, add to that a cancer diagnosis and ongoing treatment and it gets even more daunting. There are so many more things to consider. My son started Reception when he reached long-term maintenance in treatment for ALL (Acute Lymphoblastic Leukaemia), here is my guide for starting or returning to school during cancer treatment.

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What Needs To Happen

Before your child starts or returns to school, your CNS (Clinical Nurse Specialist) will arrange a time to visit the school to go through a carefully written care plan that is unique to your child. It will contain information about their diagnosis, treatment plan, side effects, medical aids, things to look out for and what to do in an emergency. Ideally, the CNS will go through the care plan with the class teacher, any teaching assistants that will be in the class and the Head and/or SENDCo. You will also be invited to this meeting, it will give you the chance to explain how the treatment affects your child specifically as well as the medical terminology that you use e.g. wiggly, pokey etc.

If your child has a feeding tube that will need to be used in school (for fluids, nutrition or medication) then a nurse will need to visit the school and train staff how to use the tube and go through your child’s feeding plan. Our school had 3 members of staff trained between September when he started to October half term. They trained the 2 teaching assistants that are based in his class and another teaching assistant from a different class as a backup in case there were staff absences.

Useful Purchases

When your child goes to school, the school will be advised to monitor the child’s temperature. As we all know, if the temperature falls below 35 or rises above 38 then a trip to the hospital is a necessity. For this reason, it’s a good idea to buy a thermometer to keep in school so you know that the readings will be accurate I recommend the Braun Thermoscan 7, it’s the same one our hospital uses and we have never had a false reading from it. In fact, I have 2 of these, 1 for home (which goes in my bag when we go out and about) and 1 to keep at school.

I send an A5 academic diary to school every day so that the staff can make a note of food and drink intake, temperatures and any issues with his NG tube or PH readings. I also note all his appointments in there, whether his blood results were ok and any side effects he may be experiencing. It also has my phone number, the phone number for our ward and the phone number for our CNS (Clinical Nurse Specialist) so that they can easily be found in an emergency.

As my son is still quite young, they tend to forest school or gardening activities quite a bit. To help prevent infections, I have sent a pair of children’s gardening gloves to school so that he can wear them.

I also tend to send spare clothes to school as well as some wipes and nappy sacks for soiled items as he does sometimes have accidents. As he is still tube-fed some of the time and requires additional fluids through his tube, we have a lot of bags to go to and from school each day. I bought personalised bags and pouches from Tubie Cheeks, this is also where I get all his tube tape from as they do some fabulous designs and they stick far better than any other brands I’ve tried.

Useful Resources

The chances are that your child’s school and your child’s friends have never experienced childhood cancer before so they are likely to have a lot of questions. There is a great range of sources of information out there for both adults and children to explain cancer, the treatments, the side effects and any medical equipment that the child may have. I’ve just focussed on the ones that relate specifically to leukaemia and the things that affected my child but charities such as Young Lives V Cancer and Grace Kelly Childhood Cancer Trust have information on other types of cancers, treatments and medical aids.

Children’s book about losing hair – Anna Loses Her Hair

Children’s book about having a friend with cancer – I Have A Friend Who Has Cancer

A children’s story to explain leukaemia – Joe has leukaemia

Children’s book about having a port – My Port

Another children’s book about having a port – I Need A Port

A children’s book about having a nasogastric (NG) tube – NG Tubes For Kids

A children’s story about tube feeding – The Abilities in Me

Information about using the toilet and toilet issues – Going To The Toilet

Children’s Cancer & Leukaemia Group information for teachers – Supporting your Pupil

Young Lives vs Cancer pack for teachers – My Student Has Cancer and accompanying videos

Cancer Research UK information about ALL Together-1

Cancer Research UK information on Acute Lymphoblastic Leukaemia.

An AV1 Robot for extended periods away from school.

Draft Letter To Other Parents

When your child starts or returns to school, it is a good idea to ask the school to send out a letter advising the other parents that there is an immunocompromised child in school and giving advice on what to do for various illnesses. When my son started Reception, his classroom was isolated in a separate building from the rest of the school so the letter was only sent to parents of other Reception children. When he moved up into Year 1, the letter was sent to the whole school as he had moved into the main building.

Things To Remember

The most important thing to remember when your child starts school is to take things at their pace. The usual rules go out of the window. Don’t worry about attendance or lateness. The fact is that a child going through treatment for cancer will never have 100% attendance due to infections, appointments, fatigue, pain, shielding, discomfort and any number of other reasons. Any time that your child spends in school is a huge achievement, they are going through an awful process and will experience things that most people will never experience in a lifetime so it’s important to not put any pressure on yourself or them. Talk to the school and let them know how things are going and how your child is coping, they will be understanding and will do everything they can to help you and your child. You can also speak to your child’s consultant about a referral to the hospital school if you find that your child is missing time in the classroom.

Wishing you and your child the best of luck x

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