Madeline’s Story

Starting with the birth of our daughter in January, moving into my son’s cancer diagnosis in April, and ending with long hospital stays amid lockdowns at The Royal Children’s Hospital in Melbourne, 2020 was full of ups and downs for my family.

Read our story below to learn more about our journey over the past few years and how we are still navigating childhood cancer.

January 2020

2020 started off beautifully with the birth of our daughter, Margaret, on the 3rd of January.

My husband, Will, bought a business after a year of looking and researching, while I worked full-time in a job that I loved: Project managing the Launceston City Deal for the Tasmanian Government.

Our eldest son, Remy, was starting full-time prep school and our middle child, Alfred, was starting early learning at his own school and making his own friends.

I was looking forward to our family’s next chapter. I was creating children and assisting opportunities for their future through their education and with my husband’s practical and pragmatic ways of including them in his business and through my job – all this with a foundation of love and optimism.

March 2020

COVID started to have an impact, and our concern primarily was Will’s dad who is high risk. We were all fit and healthy, but we didn’t want to put Will’s dad at risk, and we wanted to do our best to slow the spread and flatten the curve. I was on Maternity leave, so we had the opportunity and took the boys out of school three weeks before the end of term 1.

Alfred developed a wheeze that was diagnosed as Asthma. Lockdown was coming and we were self isolating earlier than most. My husband’s business had 2 months of work if it was allowed to continue, I was on maternity leave but talking with work about starting back in some capacity. We sold the camper trailer as a safeguard in case we needed the money. Will purchased enough paint to paint the house if lockdown came into full force.

 

4-6 April 2020

11:00pm Saturday night in early April, Alfred had an Asthma attack, and his puffer had the reverse effect. Will resuscitated him twice before the ambulance arrived. Emergency for 4 hours. ICU for the rest of the night.

Sunday morning a CAT scan was done. Alfred has a mass pushing on his lungs and heart – it is Cancer. He can not lie down or tilt to the side in case the mass collapses his lungs. Because Margaret is only 3 months old and I am breast feeding her, Will flys with Alfred to Melbourne via Air Ambulance. This is risky, I am petrified. They arrive Sunday night, get admitted into the ICU ward at the Royal Children’s Hospital, and I book my flight for Monday morning.

Remy stays with my parents until we have a diagnosis and timeframe. I arrive in Melbourne with Margaret and go straight into a diagnosis meeting.

Alfred has T-Cell Lymphoma, the mass is 360 degrees around his chest.

Phase 1 and 2 of treatment will take 3 months and then we review and map out the next 6 months to 2.5 years. Alfred has no immunity. Alfred is 3 and this is awful. People say they can’t imagine it and that is because you can’t bring yourself to imagine it.

Hospital in lockdown, no visitors or siblings, and one parent bedside at a time. No volunteers, no meerkats, no cinema, no business hub for family hospital admin services, no external support for children or families allowed to operate. Only essential workers.

May 2020

Remy starts to crack. It has been 2 weeks since his life was flipped upside down. We can’t truthfully tell him that Alfred isn’t going to die. My mother flys Remy to Melbourne knowing that she will have to quarantine in a hotel when she returns to Tasmania.

We shave Alfred’s hair just before his 4th Birthday. Alfred is not walking, well actually he can’t even right himself if he slips sideways on the couch. He has nausea and is being fed through his nasogastric tube overnight. Alfred is our full time care. He never complains, and he has a joke or a bluey funny to brighten the moment when he can muster it. Remy is remote learning and Margaret is finding her voice.

We now have a hospital routine and home routine. Will sleeps overnight in hospital with Alfred and I go in for the day with Margaret (Margaret is only allowed in because I am feeding her). We do swap over in the carpark as Remy isn’t allowed in. We are okay with this, because the hospital is doing everything it can to keep COVID out. Will only sees Margaret and I for swap overs.

June 2020

Parks begin to open up as restrictions start to ease. We are starting to see the end of the first 3 months of treatment and discuss the potential of having the 3-month interim maintenance phase back at home in Launceston. We are all looking forward to this, we all need this to reset and find a new normal with Alfred’s 2.5 year journey. Will can kick start his business and Remy can go back to school. Alfred, Margaret and I can work through the treatment together, flying back to Melbourne in October with assistance from one of our parents for the next big 3-month phase. Will and Remy would look to come back and forth from Tasmania for long weekends.

We start to see the sunshine again.

Will’s brother visits from Sydney for a weekend. My parents visit from Tasmania (again knowing they have to quarantine for two weeks, but from home this time). We are feeling confident and plan for Remy to fly back with them to be able to quarantine and start school on the first day of term 3. Will plans to see out the last big part of phase 2 and fly to Launceston on the first school day so he is home when Remy finishes school. Alfred, Margaret and I will fly home roughly a week or two later after the test results are given. Will puts in an application to be able to work and not quarantine. I apply for a masters course. Margaret is now six months and eating solids.

We say goodbye to Remy, Mum and Dad. We talk to friends and family about seeing them. We will see our cat and dog soon. We are all getting excited.

August 2020

Three days into Remy’s quarantine and Melbourne has turned. Borders have closed and we are now not going home until January.

Six more months in Melbourne away from family, friends, work, pets.

Remy is now having a Tassie Holiday (the holiday we all want). He quarantines for 2 weeks, goes to school for two weeks, and is one of five people flying to Melbourne in the middle of a pandemic.

March 2021

Now we are home in Tasmania surrounded by family, friends and a community who are a supporting us in amazing ways as we create our new normal.

In August 2022, we hope Alfred can finish his treatment.