Connecting in Isolation

Written by Kara Nell

You know… it will be ok. I’m watching the world and in unprecedented, uncertain times I see it destabilises us all. It’s scary times. It’s the unknown. We’re thrown into a world we don’t understand. We’re unsure what the future holds. We have lost our stability, some of us our financial security, some of us are unable to see our loved ones through fear of spreading or catching a virus.

I see it. I’ve lived it before. From someone who knows. From someone who has had their world turned upside down in one moment, who has been thrown into an unknown world. From someone who has lived day after day, week after week, month after month in isolation… it will be ok. It will pass.

You will somehow find your strength, realise the true value of life, realise that those little things, the small moments, they matter. More than you could ever imagine. You will see acts of kindness that will take your breath away. You will understand that we all react differently when life throws us curve balls but really, where is the beauty in life without those differences? You will struggle, cry, face those fears head on. You will be ok.

It’s isolation. It’s not easy. The biggest lesson you could learn, if there’s one thing you realise in these tough times, it’s to count your blessings. There is light to be found in the dark. There are always others who have it so much worse. There is calm and hope when the storm passes. It’s ok if it feels tough, if you’re overwhelmed, frustrated, scared of what the future holds.

Isolation is tough. It will teach you who you are. It will show the world your strengths and weaknesses. You will be you, warts and all. Savour those small moments. Hug your kids, love them. Spend time together. Don’t worry about the curriculum. Don’t compare yourself. Don’t fear time lost. Don’t waste time thinking what you should be doing, how life should be. If you do one thing over the next few months, be in the moment. Connect with your children. Love them. Forgive yourself. Dance. Wrap your arms around your family.

Let this smile remind you…academics, money, wealth…in the end…when everything else is gone…love remains 💚 how lucky are we to spend such quality time with those who mean the most to us? I’d give everything for one more moment with this smile ❤️🎗

How the coronavirus is affecting treatment families

* Note: This story was written on March 27, 2020. Hunter is now in remission and he and his family are back home in Perth.

How the coronavirus is affecting treatment families

The world has changed, and the threat is real. For a family like Hunter Madden’s it’s already off the scale when we talk about stress and fear. This extremely brave little boy is currently undergoing treatment for Acute Lymphoblastic Leukaemia for a third time, having relapsed for the second time, just one week shy of his one-year post transplant anniversary. Hunter and his family have been through a lot.

Now, due to the COVID-19 Coronavirus Pandemic, this family of warriors must battle a new challenge and all that it brings – including isolation, panic buying, concerns with travelling interstate, risks to their family, on top of the challenges and worries that having a child with cancer already presents.

Hunter and his family are no strangers to battling the unknown and although Melbourne is not normally considered so far away from Perth, in today’s reality it certainly feels that way. We had the opportunity to speak with Kate Bettenay, Hunter’s Mum, recently to discuss what their concerns and fears were, and how this COVID-19 pandemic was affecting them all.

How has Hunter’s treatment been going since diagnosis?

Hunter has ALL, he had a bone marrow transplant in January 2019 in Perth but unfortunately relapsed for a second time just 1 week shy of his 1-year post transplant anniversary. For Hunter to have any chance of surviving we have had to travel to Melbourne where he will receive CAR T therapy. We arrived in Melbourne just over a week ago on Sunday the 8th of March. He has so far had 3 days of chemotherapy to prepare for his cells which were due today but have been delayed until tomorrow because he needs an emergency procedure to biopsy some shadowing they have found on his lungs.

How has the Coronavirus Pandemic affected your family?

We feel really lucky that we were scheduled to fly over when we did. I think if we were leaving now we would find it a whole lot more stressful coming through airports. Even at the time we did travel, it was a huge anxiety provoking experience. We usually try to keep Hunter away from large crowds, airports and planes which can be germ breeding grounds at the best of times.

Since Australia has ramped up their efforts to contain the spread of the virus we have had to lock the doors to Hunters hospital ward, no one who is not a primary carer is allowed in. All siblings are forbidden from entering the ward, which means Hunters little brother Zac can’t come and see him anymore. Neither can his grandparents who thankfully have come over from Perth to help look after us all.

The school has closed on the ward, all NGO’s are no longer allowed to enter or provide support outside the hospital. Just today we have had the art and music therapist cancel, massages cancelled and the charities have had to come pick up all the equipment they have lent to Hunter while he is in hospital.

The government have opened a testing clinic downstairs of the hospital. They have sectioned off a portion of the stairwells for us. We have been told by the medical team not to eat at any of the cafes and to walk briskly through the corridors to get to the ward. Stay away from any crowds and apply social distancing.

My biggest fear is that someone we encounter tests positive for the virus and then we are forced to self-quarantine for 14 days meaning we cannot be there to care for Hunter when he needs us the most.

Has the panic buying at the shops affected you?

I have been watching all the panic buying unfold on social media. We hadn’t had any firsthand experience as we haven’t been able to get out of the hospital at all to go to the shops. I did try to do an online order the other day and the first available time slot was for 10 days’ time. By the time I went in to book the slot the supermarket had closed all online ordering.

Hunter asked for French lamb cutlets for the night he receives his “Turbo T’s”-CAR T cells. I walked to the closest supermarket as we obviously don’t have a car and have been advised to stay off public transport and taxis. When I got there last night I was blown away by what a saw. The meat isles were almost completely bare. All that was left was a couple of Christmas hams and two packs of beef hearts! There were no frozen vegetables, no flour, no sugar, no staples at all! I felt defeated.

Given that you are currently in Melbourne for treatment, are you worried about travelling back to Perth on an aircraft?

I am terrified about how or when we might be able to get back home. It’s too scary to even think of right now though. We have the battle of our lives ahead of us with Hunter receiving his T cells back. I can’t even take my mind to what might happen at the other end of this. I do know however that once he has recovered from this acute phase in his next treatment, he is going to be severely neutropenic and very susceptible to catching viruses. We may end up being stuck in Melbourne for the foreseeable future, until we get this pandemic under control. We might not even have a choice if the government shuts interstate borders.

One thing I do know however is that if we didn’t travel when we did and we were stuck in Perth, unable to get over here to Melbourne, Hunter would have 0% chance of a cure so for that I am grateful we are here.

What can people do to help families like yours cope during this pandemic?

Please when you are panic buying, be mindful of those in need. It may be a senior or a person with a disability, who doesn’t have the opportunity to travel to different supermarkets or on a number of different occasions, they might be people who can’t afford to buy extra as their budget doesn’t allow them to have expendable cash. Or it could be a poor little 6 year old boy who had his heart set on French lamb cutlets after enduring 3+ years of invasive and painful procedures just to have a chance of a normal life we all take for granted. This is a time to support and care for those who are vulnerable, not to use our powers to knock them down again and again. #KindnessWins

By the time you all read this story the world would have changed many times over and Hunters journey will be very different. The fear is the same, the stress is the same and the solution is to keep finding ways to self-isolate. Be kind to every single person you’re connected to and help families like Hunter’s feel a little safer in their isolation.

How to talk to your children about COVID-19

With the recent COVID-19 outbreak, parents all over the world are facing the same problem: how to explain this uncertain time to their children in a way that doesn’t distress them. Here are some of the best tips about how to inform your kids about the pandemic, while helping to limit their fears.

Be age-appropriate

Kids of all ages need to know what’s happening, especially since they are probably already hearing about it on TV, radio, social media, as well as from other people. Talking to your children is important to help them cope with what’s going on but it’s important that they are told in an age-appropriate manner.

Keep the information simple and brief for younger kids and offer more detail for older kids. It’s important to keep the information positive as possible in terms of what the world is doing to stop the spread of the virus. Be sure to get your information from trusted sources. We recommend looking at the WA Department of Health website for the latest information and advice.

Show them how to protect themselves

The safest way to keep children safe from COVID-19 and other diseases is by simply encouraging good hand hygiene. Show your children how to properly wash their hands, with soap and water for at least 20 seconds.

Be a good role model and let your kids see you washing your hands often! You can even make this fun for the kids by encouraging them to sing a bit of their favourite song or by singing Happy Birthday twice.

It’s also important that your children know how to cover their coughs and sneezes with their elbow or tissue. If they do use a tissue, they should put it straight in the bin after.

Stay calm and offer reassurance

Kids pick up on when parents are worried or anxious. So, when you are talking about COVID-19 with your children, be sure to use a calm voice and try not to seem upset.

Remind your kids that most people will make a full recovery from the virus and although they might catch it, it is unlikely to make them feel very sick. However, it is still important that they are aware on how it can affect the elderly and immunity-compromised people differently. If your kids are worried about their grandparents, let them call or video chat with them so they feel reassured.

Tell your children that if we listen carefully and continue to do the right thing, it will all be okay. You can also offer them confidence by telling them that scientists all over the world are working hard to develop a vaccine.

Be there for them

The most important thing is to simply be there for your child. Let your kids know that it’s normal to feel stressed or worried at times. Recognise these feelings and remind them that stressful times pass, and life will go back to normal.

It is important to keep checking in with your child. News about the outbreak is constantly changing and your child’s feelings and questions about it might too. Help them think through any stories they hear and offer your support.

If your child is naturally anxious, like many children are, this news may push them towards panic. Be on alert for highly anxious behaviour such as trouble sleeping, loss of appetite, over-eating, clingy behaviour, excessive worry, and social withdrawal. If you believe your child is overwhelmed by the situation, you should seek help from your GP.

For updates on CLCRF’s ongoing response to COVID-19, please check our website regularly and follow our Facebook,  Instagram and LinkedIn pages. You can also subscribe to our email newsletter to get our latest updates straight to your inbox.

Getting through COVID-19 together

Over the years, we have been overwhelmed by the amount of support we’ve received from our supporters and the wider community. Now, during this uncertain time, we want you to know we are here to support you. Here are some of our top tips for how to cope during this time:

Stay connected

While we are keeping physically distant, it’s more important than ever that we remain socially and emotionally connected. As it’s vital for our mental health and wellbeing, we need to make sure we are keeping in touch with our family, friends, and community, even if we can’t see them in person. There are so many ways we can stay connected, including chatting online, video calling, creating online groups, playing online games together, or even writing letters or postcards.

Have fun

You may be spending a lot more time at home while self-isolating and practicing social distancing. It’s important to remember that being confined to your home doesn’t mean you can’t still have fun! Why don’t you use this time as an excuse to bond more as a family and try some fun activities together? Whether you feel like getting the kids in the kitchen, digging into your family board game collection, doing a puzzle or getting crafty, there are plenty of options to keep everyone’s spirits up during this time.

Take breaks from the media coverage

It is understandable if you are feeling afraid, anxious, or overwhelmed by constantly changing alerts and media coverage. While it’s important to stay informed about the crisis, it’s more important to look after your mental health and wellbeing. Take breaks from watching, reading, or listening to news stories about COVID-19, including social media. Use these breaks as a time to unwind and do some other activities you enjoy.

Stick to routine

It is important that you and your family continue to stick to a routine as much as possible, even though your circumstances might have changed. This will ensure you are completing all of your necessary tasks and it will also help to alleviate anxiety and stress. Sticking to a routine is especially important for children who may now be doing their schooling at home. They will need normality, familiarity and structure to make their learning as effective as possible.

Keep active

While we are confined to our homes, our bodies and minds still need exercise to function well, keep us healthy and improve our mood. This is especially important for children who would usually spend a lot of time moving around at school. If it is practical and safe to do so, try and spend some time outside riding, jogging, or walking when there are less people around. You could even add some movement to your day with an online workout or dance video.

It is a very unusual time for us all but know that we will come through it together. If you need any more tips or resources to help you navigate through the uncertainty, send us a message through our Facebook page or by emailing us at [email protected] and we will support you as best as we can.

How to stay connected while social distancing

While we are keeping physically distant, it is more important than ever that we remain socially and emotionally connected. As it’s vital for our mental health and wellbeing, we want to make sure that during this time, you have ways to stay connected to your family, friends, and community, even if you can’t see them in person.READ MORE

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As schools have now closed, many families will now need to take on the task of schooling at home. This can be overwhelming for parents who haven’t had any teaching experience, but rest assured you can get through it with these handy tips! READ MORE

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The COVID-19 outbreak means you may be spending an extended time at home with the kids while you self-isolate and practice social-distancing. Being confined to your home doesn’t mean you can’t still have fun! Here are some great ideas to keep the kids – and even the adults – entertained. READ MORE

Coronavirus COVID-19: Office Update

Update as of 1:25pm — Monday 23 March 2020

As per our previous communications, we are taking the coronavirus outbreak very seriously and with a focus on the health, safety and wellbeing of our staff, members, volunteers, visitors and others at the workplace. As such, until further notice the CLCRF office will be closed and our team will now be operating from home.
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With the recent coronavirus outbreak, it is important that you take care of your health and protect your family and others around you. At CLCRF, we are taking the situation very seriously and have been focusing on the health, safety and wellbeing of our staff, members, volunteers and visitors. READ MORE