For many, the return of shielding for the clinically extremely vulnerable at the start of this year was a tough pill to swallow. At this point it feels never-ending. But to families like mine, it’s been part of our daily existence since before the pandemic even began.
That’s because, before coronavirus turned the whole world upside down, our family’s world turned upside down when our daughter Amelie was diagnosed with cancer at the age of six.
Amelie has acute lymphoblastic leukaemia (ALL). It’s rare. Around 790 people are diagnosed with it each year in the UK – most are children and young people. Because ALL attacks white blood cells which fight infection, it can cause people to develop an extremely weakened immune system. The cruel twist is that Amelie’s treatment for her cancer – regular chemotherapy – does the same.
Minimising the risk of illness is vital, but it isn’t easy. Amelie has a Hickman line (a long plastic tube that is inserted through the chest and into the vein draining into the heart) to administer her treatment. The area around where the line exits her body is particularly susceptible to infection. Everything that comes into the house must be sanitised, which, trust me, is no mean feat when you have three children under the age of ten.
Since her diagnosis Amelie has been using something called an ‘AV1 robot’ (or ‘Amelie-bot’ as we call it). It’s a little 30-40cm high robot designed for children who can’t attend school in person. It’s like their eyes, ears and voice in the classroom – she can control it remotely from her bed to talk to her friends, raise her hand and be part of discussions in class.
“Pretty much everything we do is online, with the occasional doorstep visit. We miss human interaction massively.”
In normal times, the Amelie-bot would go to school for her whenever her blood counts are particularly low, like after her chemo. But Covid changed everything. The measures we were taking before had to be ramped up, and soon Amelie used her robot virtually every day when schools were open. Pretty much everything we do is online, with the occasional doorstep visit. We miss human interaction massively.
I know many people feel the same at this point. As someone who’s been through this more than most, I want to reassure those who feel like they are barely crawling over (what is hopefully) the finish line that they aren’t alone. Shielding takes a huge physical and emotional toll.
It’s important to know that it’s alright to ask for help. In our case, when the trial period for Amelie’s AV1 robot ended in December and we needed financial support to make sure she could keep using it during the second wave of the pandemic, a charity called Bubble Busters were able to help us out with the payments. CLIC Sargent offered us a grant to help cover sudden expenses like travel to and from hospital, extra food costs and increasing household bills when Amelie first got sick. To show her how brave she is, we nominated Amelie for a Cancer Research UK For Children & Young People Star Award and the special pack they sent over helped lift her spirits.
Remember not to be too hard on yourself or others. Everyone has the best intentions, but mistakes and scares are going to happen. One time when Amelie was in protective isolation after her chemo, we had a call from our consultant late on a Friday night telling us that one of the play leaders looking after her had come down with chicken pox. Just a few weeks ago, we had Covid in the house because of nursery. With each fresh issue you just take it on the chin and deal with it as best you can but resist the temptation to become overly paranoid – because it’s not practical or productive.
“Any time I start feeling remotely sorry for myself, I look to Amelie.”
Finally, however hard it is for you personally to make those sacrifices to keep your family member safe, keep putting yourself in their shoes. As a family we’ve had to cancel countless holidays at the last minute because Amelie developed an infection. We could all desperately do with a getaway to have some fun and forget everything else.
Around Christmas 2019, we were booked on a trip to go to Lapland so that Amelie could meet ‘the real Santa’. She couldn’t have been more excited. Then she picked up an infection. The doctors wanted to give her a blood transfusion and decided to keep her in for a few days meaning we had to cancel the trip. And what does she do? She decides to write a letter to Santa from her hospital bed instead, apologising for not being able to make it this year.
Any time I start feeling remotely sorry for myself, I look to Amelie. Amelie, who has every reason to throw a tantrum every single day. Instead, she faces everything with staggering resilience.
Amelie’s family are raising awareness of the Cancer Research UK for Children & Young People Star Awards, celebrating the courage of children who’ve been diagnosed with cancer. For more details and to nominate, visit: cruk.org/starawards