Transplant vs Covid19 Self Isolation

In March 2019, the UK went into lockdown to help to slow the spread of coronavirus. Many families struggled to adjust to self-isolation but for families with childhood cancer survivors, especially those who required a bone marrow transplant, self-isolation is nothing they haven’t been through before.

Kidscan Ambassador Charlotte Jennings, is one of those cancer survivors who required a bone marrow transplant. The treatment was tough, and meant that Charlotte had to self-isolate for over 7 months, whilst her immune system returned to normal. Her mum Lynne shares their story.

After our daughter was first diagnosed with cancer, she spent nearly 18 weeks in hospital whilst she received the first part of her treatment. After she returned home for a couple of weeks, she returned to hospital to receive a lifesaving bone marrow transplant which meant total isolation in hospital for 7 weeks before we started 7 months of isolation at home as a family.

There are many differences between the isolation that people are going through now and the isolation that transplant families have to endure to keep their children safe.

The first difference is handwashing. To prevent the spread of Covid19, the government is advising people to wash their hands regularly as a precaution. Many people are finding that their hands are cracking because of the sanitizer, but when your child has had a transplant imagine washing them 50 times a day –your hand become dry and cracked but your child is safe.

Another different is that a lot of people have decided to take advantage of their time home and clean things to relieve the boredom. But a transplant family will wash the child’s bedding every day and clean the house constantly to make sure there are no germs. If you touch a door handle you have to wipe it clean before that child touches it, just to keep that child safe.

Social distancing is another difference. Although the basic concept is the same everyone else is social distancing too so they understand how to keep a safe distance and why you are moving away from the. But try social distancing yourself in a busy supermarket when nobody else is – you learn to look at people and see if they are starting with a cold or anything and you learn to make sure you don’t too close to anyone. Now imagine going to a hospital appointment whilst social distancing, having a child in a wheelchair and needing to use the lift. You have to stand and tell people at a busy hospital that they can’t get in that lift with you – yes you get the nasty comments and the looks of pure disbelief – but you grow a thick skin and to be truthful you don’t care as long as your child is safe.

Food shopping is a whole new world for a transplant parent following what is known as the ‘Clean Diet’. All foods have to be processed which means nothing fresh unless you can peel it. Everything has to be cooked (or burnt as we put it), which doesn’t sound too bad until you factor in that they can only have food from a packet on the day it has been opened. For example once a loaf of bread has been opened it can only be used on that day, same with ham, butter or jam.  We ended up buying those little packets of jam & butter that you normally see at hotels!

The other problem with shopping is that a bone marrow transplant can mess with the child’s gut, for example Charlotte would ask for a Chicken sandwich, which was duly made, taken to her and the smell would make her sick, so you would have to go back and remake her something else, it got to the stage where we were having to go to the shops on a daily basis whilst social distancing and avoiding people because doing a week’s shopping was pointless.

Because of coronavirus, people everywhere are now experiencing their first time isolating themselves, but this is 2^nd nature to a cancer family.

As February half term arrived before lockdown was announced, plenty of people took advantage and went away on holiday. Back then we had heard about coronavirus in China, and we then knew that we had to protect Charlotte as this virus would find its way over here. The treatment that saved Charlottes life also left her with lifelong conditions that means she is at very high risk for catching coronavirus. So with the full support of her college we took the hard decision that she would work from home, this was the 2^nd time in her life she has been taken away from her friends to isolate through no fault of her own. We are so lucky that she understands why as her parents we made the decision – doesn’t mean she likes it but in her usual positive way she told us – “there is no way this virus is going to kill me when I have already fought to stay alive.”

We are so proud of Charlotte and the way she always bounces back no matter what she faces. When Charlotte was going through treatment she spent her 12^th Birthday in hospital and because of coronavirus, she will now spend her 18^th in isolation. Each year she holds a charity night where instead of birthday presents she asks for donations for the hospital that treated her, as well as other charities close to her heart. But this year she has had to face the reality that she will have to postpone her celebration.

Since 2016, Charlotte has raised over £40,000 for charity, and continues to dedicate her birthday to raising money. If you would like to support Charlotte you can follow her Facebook page