The Spirit of the Battler
18-Dec-2020
Written by Kristy Blacker, this feature tells the story of a mother and son, hundreds of kilometres away from home, in an unfamiliar city in a different state in the middle of a global pandemic. It is an inspirational story about a young man who has been given a second chance at life and a mum who went to great lengths to make sure he got that chance. Editor
The name Cadel has the meaning of ‘spirit of the battle’ and Cadel is the name of the third child for my husband Scott and myself.
We already had a daughter Lorelei and a son Xavier and we always spent a lot of time when choosing a name for our children. Scott (my husband) and I have both always admired Cadel Evans, the Australian cyclist, but when we chose the name for our third child, little did we know what was ahead for him and that his name’s meaning would ring true for him so much.
My name is Kristy and my son Cadel had a double lung transplant in October 2020.
Cadel was born in 2010 in a hurry and was sick from the very start. At just five weeks of age he was diagnosed with Cystic Fibrosis.
Cystic Fibrosis, or CF, is a chronic illness that primarily affects the lungs and digestive system as they get blocked up with a thick sticky mucus.
Cadel had a lot of respiratory infections at a young age despite our best efforts to keep him as healthy as we could. When Cadel was just two years of age Scott and I were sat down and told the devastating news that Cadel may not make it to the age of three as his lungs were so scarred from repeated respiratory infections.
We are glad to say that Cadel celebrated his third birthday as well as many more, due to our family’s dedication to his health, having a positive attitude for his future and the backing of an amazing CF team at the Queensland Children’s Hospital (QCH).
Cadel has continued to spend a lot of time in hospital having regular admissions for IV antibiotics to fight off infections in his lungs.
In December 2019 Cadel was admitted again for another round of IV antibiotics and he became very unwell. During this admission the team in QCH decided it was time to engage the paediatric lung transplant team in Melbourne as Cadel was running out of options.
This was of course a hard time for our family again but we took the same attitude that we had in the past that we would do anything for more time with our child.
In late February 2020 the process for the transplant was started and in early March some of the transplant team flew up to Brisbane to meet Scott, myself and Cadel to discuss the transplant options.
They explained that the Alfred Hospital in Melbourne was the only place in the nation to perform paediatric lung transplants so when the time came for Cadel’s transplant to happen he would need to be transferred to Melbourne.
Little did any of us know that a global pandemic was starting!
The transplant process became delayed and our trip to Melbourne to complete the necessary assessments was postponed as the nation, and the world, went into lock-down.
We were all concerned how this delay would impact Cadel’s health.
In early June the Alfred lung transplant team contacted us and the process resumed as the world adapted to a new normal.
We started the assessments and transplant process again, but this time via zoom and telehealth calls. It was a lengthy process over two separate days and included hours of video calls with a number of health professionals.
Cadel was officially listed on the double lung transplant list in July this year and it was decided that we could wait for the call while continuing to live in Brisbane as Cadel’s health was stable.
We carried on about our days, with school and work, while waiting for the all-important call and then in October Cadel became unwell and ended up in intensive care in the QCH on hi-flow oxygen.
Both the QCH and Alfred teams were concerned about the sudden change and decline in Cadel’s health and made the decision that he needed to be medically transferred to Melbourne to wait for donor lungs. This opened up more options to available organs as his need for transplantation became more urgent.
The transfer happened very quickly. Once the decision was made it was literally two days later that we waved goodbye to the family, and Brisbane, with no idea when we would be returning. We were very unsure how this would all play out as Cadel was extremely unwell.
It wasn’t as simple as just jumping on a plane either, as Cadel was so unwell he required hi- flow oxygen and constant monitoring.
LifeFlight Australia jumped into action as they were tasked to fly us down to Melbourne in one of their jets.
As Melbourne was in major lock-down due to a second wave of COVID-19 we were only allowed to have one parent accompany Cadel. We had to get permission from the Queensland chief medical officer and both have two negative COVID-19 swabs before we were cleared to fly.
I flew down with Cadel, not knowing when I would see Scott, Lorelei and Xavier again. It was also unclear how long we would have to wait in an unfamiliar city before suitable lungs became available for Cadel.
Cadel was admitted to the Melbourne Royal Children’s Hospital to wait and continue being treated for his declining health.
One evening a Doctor asked me to have a seat in a meeting room and I had a horrible feeling of doom. No good news generally happens in these sort of rooms. Well that was about to change.
The doctor advised me they had found a match for Cadel and he would be getting new lungs!
This was both exciting and scary and I couldn’t help but think of the devastating time for the donor family.
I immediately left the room to call Scott and share the news. We Face-timed to tell Cadel together that he was getting a second chance at life! Cadel, like us, shared those feelings of excitement and fear.
The transfer to the Alfred happened early the next morning and Cadel was prepared for surgery. Again we made last minute video calls to family before the surgery to say “see you soon” and wish him luck.
It was a worrying time but we knew he was with the best-of-the-best and so we handed our little man over to them so they could give him the greatest gift ever.
The wait to hear if the surgery went well and he was in ICU felt like it took forever. I was alone in a strange city, Scott was at work back in Queensland with our other children who were at school, but we were all worrying about what was happening and waiting for the news that he was out of surgery.
That call came thankfully and the surgery was completed without complication.
Seeing Cadel in ICU is a sight I will never forget and I did it alone, with no other family by my side to comfort me. It was truly a very trying and emotional time.
The period in ICU was challenging – seeing Cadel, so little in this big bed, with tubes and lines everywhere.
It was very tough for Scott to be back in Queensland and only able to share the moment over Face-time, and unable to hug and reassure us that everything was OK.
Cadel spent a considerable amount of time in ICU and experienced a few complications including a re-intubation. The doctors and staff, however, were happy with his progress.
Borders were still closed during this time and lock-downs were still in place due to COVID-19 restrictions.
I missed the rest of the family terribly and they missed us too. It was really hard to be away from them during a time when you are normally comforted by family. It definitely was an emotional roller-coaster.
Things change so quickly in an ICU environment. It was draining emotionally and physically and when I tried to sleep I was worried about how Cadel was coping overnight, all alone in an adult hospital with the 24/7 buzz and rumble of an ICU. Add to this the need to try and keep our family in the loop with everything going on.
Cadel did really well with his recovery from surgery and in no time was transferred to the ward – just in time to celebrate his 10th birthday in nearby Fawkner Park.
The lovely and amazing staff of the Alfred rallied around Cadel and myself and organised a party in the park across the road from the hospital with a fantastic cake and even sang happy birthday to him.
It was a bitter sweet moment as there were times when we weren’t sure he would make it this far.
Cadel was well enough to leave the hospital grounds for the first time, he was turning double digits and had a second chance at life, but our family was back in Brisbane and not able to be here to celebrate all these amazing milestones.
I must say though, it was pretty special to celebrate with Dr Julian Gooi, the surgeon who gave him a second chance as well as the other staff who worked so hard to make the transplant a possibility and help Cadel with his recovery.
Cadel kept amazing the doctors and staff with his recovery and was discharged to an apartment as part of the hospital-in-the-home (HITH) service.
Cadel was technically still an inpatient, but the nurses came to him twice daily to administer IV antibiotics. This was amazing as it was the first time in months he wasn’t in a hospital bed and had some freedom to be a normal ten year old.
Things continued to go smoothly and Cadel soon finished the round of antibiotics and is now officially discharged from the Alfred and attending appointments as an outpatient.
He has medical reviews, check-ups with an occupational therapist, psychologist, dietician, physio’s and has regular blood tests. He will continue to do this until mid-January when, hopefully, he will be cleared to fly home to Queensland in time to start the new school year where he will begin Year 5.
During Cadel’s admission to the Alfred and then during his rehabilitation as an outpatient, we were lucky enough to have the support of the Heart & Lung Transplant Trust of Victoria (HLTTV) to have accommodation close to the Alfred. Staying at the Park Regis Griffin Suites (see article on page 8) on St Kilda Road was a massive game changer for us as the financial cost of staying near the Alfred for such a long time would have been extremely difficult for our family.
I will be forever grateful to the HLTTV to have had somewhere close to the Alfred during the period when Cadel was in ICU as I was staying by his side at the hospital for very long days (many over 13 hours) and then heading back to the accommodation to cook dinner, make some lunch for the next day, have a shower and try and get some sleep.
It was a welcome escape from the beeping machines and busy routine of ICU and when Cadel was admitted to the ward it was a place to wash clothes and refresh and prepare for the next day.
During HITH it was a place close enough for the nurses to visit twice daily to administer IV antibiotics and, as an outpatient, a home away from home for Cadel and me.
We are able to have local adventures on weekends, sightseeing and ticking a few previous ‘The Block’ TV show building sites off our list as we are big fans. We walk to his regular visits to the hospital which is sometimes three times or more a week at the moment.
It will also soon be a base for the rest of the family to visit and reunite to spend Christmas together and explore a new city.
Our family is forever thankful to the donor and their family for their ‘gift’ in a devastating time of loss and grief. We will always remember them as we celebrate all Cadel’s milestones – big and small – and continue to create many new memories to treasure.
