Naomi Duxbury’s daughter, Mia, was aged four when diagnosed with B-cell acute lymphoblastic leukaemia in September 2021. Here, she tells us about the importance of working closely with Mia’s school to create a safe, supportive and ‘normal’ learning environment for her.
What was supposed to be Mia’s first day of school was instead her first day of chemotherapy. Her treatment finished just over two years later in November 2023, and she’s now in remission. Although it’s been a long road, with a few bumps along the way, we’ve been supported by her school from the very beginning. As soon as Mia was diagnosed with leukaemia, we informed the school of her diagnosis and that she wouldn’t be starting for some time. We were heartbroken that Mia would miss her first ever day.
Mia’s school was very supportive and understanding and her teachers even called us to check to see how she was while she was in hospital. During that time, the teachers explained her diagnosis to her class. Mia had attended pre-school with a lot of those children, so they were made aware that she may look poorly and may not have much hair. The children and her teachers made her cards and a scrapbook and when she was able to go to school, they were all so excited to see her and were so caring and made such a fuss over her.
To help prepare them to support Mia, her teacher and head teacher went on a training course. They didn’t have to do this and did this on their own initiative, which reassured us that when she did return to school, she was in safe hands. Once Mia was discharged from hospital, her Macmillan nurse, Neil, and her dad, Jacob, had a meeting at the school. Neil created a care plan and risk assessment and discussed various things such as treatment side effects and her nasogastric tube and portacath. He also explained that as Mia was immunocompromised, should anyone have measles, shingles or chickenpox in school, and she had direct contact with them, then we’d need to know as soon as possible.
Mia’s school was great, issuing a letter to all parents explaining everything. In the school’s weekly newsletter, it always said that parents/legal guardians should inform the school immediately if their child had measles, shingles or chickenpox. Any time they’ve been informed of this, the school staff have always told us straight away. The call would always start with, “Don’t worry, Mia’s okay, but we want to let you know there’s a positive case of chicken pox”.
We know first-hand how important it is that this is communicated to us, as during the last summer holidays, Mia spent most of the time in hospital as she contracted chicken pox, which turned into shingles and resulted in kidney damage, and we had to cancel our holiday. Nurse Neil was very impressed with how well Mia’s school listened and actioned everything to ensure Mia’s wellbeing and safety at school.
The first six months of Mia’s treatment was the most intense. During this time, Mia went into school twice a week and did half-days, while we made sure she didn’t miss out on class photos or special events (including the Christmas show, where she was a little angel) and the school was very happy for Mia to come in and take part. We were given learning packs for Mia to do at home, but it was also emphasised to us that if she didn’t feel up to it then it was absolutely fine. Neil said it was very important that Mia had as much normality in her life as possible so when Mia felt well enough, we ensured she went to school.
As Mia’s school teachers and staff were so supportive and accommodating, and ensured they educated themselves and took the time to learn and listen about her diagnosis and additional needs, we felt reassured that she was safe and looked after when there. As Mia progressed through treatment, we started increasing the days and hours in which she was in school, basing this on how Mia was doing while also working it around treatment at hospital. We went from half-days to two or three full days and then, eventually to full time which started when she was in year one. Everyone at the school was so understanding during this time. They allowed community nurses to come in to do weekly blood tests, and never once complained when Mia couldn’t attend due to being poorly or having hospital appointments.
Receiving extra learning support
Mia was on treatment from reception to the beginning of year two. This included hospital visits, admission, community nurse visits and illness due to side effects of being on treatment and being immunocompromised. As a result, Mia missed out on quite a lot of school, and did start to fall behind, particularly in phonics. Mia’s head teacher proposed that she started 15 minutes early every day so they could do extra phonics learning. She still does this now and has come on leaps and bounds in this subject, and we can’t thank the teachers enough for taking the time to sit with her every morning and help her with this.
When Mia finished treatment, her school allowed her to do the end of treatment poem and ring the bell during school assembly, which all the children and staff were so excited about and a few of the teachers even cried, having also been on this journey with Mia and us as a family. Mia’s school has also helped fundraise for Candlelighters, who have supported us as a family throughout this process, and they even had people from the charity do an assembly, knowing how important it is to raise awareness about childhood cancer.
Mia really enjoys school, though not so much the early mornings! I love hearing all about what she’s been learning at school, and she gets so excited telling me, her dad and grandad about everything she’s learnt that day!
What I’d say to other parents
My advice for parents or guardians with children who are due to start school or are returning to school while undergoing treatment is to make sure you express any concerns you have with the school and be completely transparent with them. You also know your child better than anyone else.
I’d also say let your child take the lead with what is and isn’t too much. Don’t be afraid to let them go to school and escape the reality of having cancer. Let them have a little normality in their life and be like any other child. It is scary, and the first few times they attend school you’ll be constantly checking your phone, but the anxiety does ease away gradually.
Looking to the future
Mia, who is now seven, originally wanted to be a nurse or doctor after seeing the procedures being carried out while on treatment and then acting them out on her teddies. She’d perform surgeries and ask mummy to stitch her teddies back up! Now she’s older, she’s into her gymnastics and loves animals. So, when I asked her what she wants to be, she said either a vet, like her Auntie Jenny, or a teacher, just like the amazing teachers at her school. Clearly, she’s been inspired!
Since Mia has been at school full time (aside for absences due to illness, which still occur as she’s still prone to catching bugs etc.), she’s come on leaps and bounds. That’s thanks to the school for being so supportive and accommodating of her educational and medical needs. I’m very excited to see how far Mia progresses with her education and no doubt she’ll continue to shine and excel, thanks to herself and the teachers and staff at her school.
From Contact magazine issue 103 | Summer 2024
