Real Stories
Hailey and Leah: Coping with cancer & COVID-19
“We went through a lot of emotional rollercoaster rides dealing with separation, confinement and isolation. What is already one hell of a stressful situation, was exacerbated by COVID-19 restrictions.”
Leah’s daughter Hailey was diagnosed with Acute Myeloid Leukaemia (AML) in December 2019. Three months later, COVID-19 hit Australia. Suddenly, she and her family had to deal with two extremely life-threatening diseases.
It is hard to explain the emotional toll this situation has on yourself and your family. Our once very normal lives was thrown into absolute turmoil…
Steve and my family are a blended one, consisting of 6 children in total; Alexander (8), twins William (7) and Hailey (7), Sebastian (6), Celeste (5), and Rylee (1).
In November 2019, Alexander, Sebastian and Celeste live with their mother and we are fortunate to have them for weekends and school holidays.
In December 2019, our eldest daughter Hailey became very ill, with spontaneous bleeding from the nose and gums. She broke out in a what we thought was a viral rash all over her body, we were to learn that this rash was in fact tiny pin prick bruising, due to her developing blood condition.
Our GP referred us to the Albury Emergency Room for urgent blood testing, after 6 hours of waiting we were informed Hailey was suspected to have Acute Myeloid Leukaemia (AML) and needed to go to the Royal Children’s Hospital (RCH) in Melbourne for confirmation and treatment.
I will never forget the horrendous sick feeling of fear for losing my baby girl.
Hailey and I were taken by ambulance on Saturday, 14 December, 2019. Steven followed behind us with baby Rylee who was 5 weeks old at the time, leaving our son William with my parents.
Hailey was admitted and the extensive testing began. The oncology team were able to identify Hailey had a disorder with her bone marrow factory with a formal diagnosis of Myelodysplastic Syndrome (MDS) on New Year’s Eve.
We were informed we would require to be in Melbourne for 10-12 months, forcing some very tough decisions to be made about what is best for our family as a whole. It unfortunately resulted in our family being separated long term.
Initially, Hailey was given treatment for MDS, however this treatment was not fixing the ongoing issue and it was soon decided she needed a more aggressive approach in order to get on top of her condition and so began her first round of chemotherapy which is what is usually used to treat AML.
Her chemo was a combination of 3 different drugs given over a 10-day period. Throughout her first round Hailey was also required to have a bone marrow aspirate (BMA) every second day with several lumbar punctures (LP) where the chemo was injected as her dysplastic cells had made their way into her cerebral fluid and required eliminating.
Hailey responded extremely well to her first round of chemo with most of the dysplastic cells being eliminated throughout her body and all within her cerebral fluid this led to Hailey moving on to her second round, which was the same as the first.
In the interim, the oncology team were hard at work figuring out that Hailey’s condition was a genetic chromosome disorder caused by an extremely rare Runx-1 deletion. As it was suspected this condition was hereditary, I was tested and found to have the same issue, unfortunately our youngest daughter Rylee also has the deletion, however, William thankfully does not.
MDS is not curable without a Bone Marrow Transplant (BMT) and so Hailey was placed on the list for an unrelated donor as William was not a match for her. There were many conflicting emotions when we were told William may be required to be a donor, and again when we found out he wasn’t a match. Thankfully it was not difficult for the team to find a very strong unrelated donor match.
Due to the very harsh nature of the conditioning chemo, Hailey would unfortunately become largely infertile and therefore among all her other tests for her vital organs she underwent a fertility preservation operation where the surgeons removed half an ovary and put it on ice at the Royal Women’s Hospital, in the hopes that advances in technology and research would allow Hailey to have her own children one day.
As Hailey entered the Bone Marrow Transplant Unit, COVID-19 hit Australia for the first wave.
As the country went into lockdown, we were extremely worried for Hailey’s donor cells as they were from an unrelated international donor. Thankfully, she received them literally a day or 2 before the international borders were closed.
Once Hailey had her transplant, she was very closely monitored as the complications with a BMT are vast and very complicated. We went through a lot of emotional roller coaster rides dealing with separation, confinement and isolation.
What is already one hell of a stressful situation, was exacerbated by COVID1-9 restrictions.
Our son William, who had gone to live with my sister on her farm in Bendigo, was suddenly cut off from us. Steve lost his job, and while he was in Melbourne, we were unable to spend any real time together, which lead to limited time with my baby.
It is hard to explain the emotional toll this situation has on yourself and your family. Our once very normal lives were thrown into absolute turmoil with us being spread out all over the state. Overall, we spent 8 months apart with 6 of those spent in hospital.
I lost count on the amount of operations Hailey underwent or how many nasal gastric tubes she had placed. Her treatment was extensive and is still ongoing.
The physical is one thing. It has been the mental and emotional challenges that has been the toughest obstacles. Hailey became very depressed and difficult, which has been so incredible difficult to witness.
She has always been a very happy, energetic, outgoing and bubbly little girl, I witnessed her withdraw and begin to self-harm. Our fight to simply get her eating or moving in order to help her muscles has been a massive feat. She is on her way to a full recovery and we are thankful every day.
In my experience, I have found Redkite to be very approachable and extremely helpful and supportive. The comfort provided by the team through its generosity is insurmountable, especially for a family walking the toughest path of their lives.
Our family was introduced to Redkite by way of a Red Bag given to us by a volunteer on the ward.
It was filled with various objects including a diary, blankets, takeaway coffee mugs, a thermometer, cooler bag, toiletry bag full of goodies, and a pack of Kleenex tissues. I found this bag – Redkite’s Red Bag – to be of great comfort. It was a little something, which meant we were not alone in this battle.
The organisation itself has helped us in so many ways including paying bills for our home in Wodonga, giving us Coles food vouchers once Hailey had discharged and required certain foods that were more expensive, and their education grant in order to help us help our children with the extra educational needs they require throughout this time.
In July we were given the green light to go home. Hailey requires regular appointments down at the Royal Children’s being roughly every 3 weeks. This commitment is ongoing and can at times be difficult, however it has been so amazing to be home with everyone.
Hailey and William were able to celebrate their birthday together at the end of August, which for us was such an enormous milestone as it was believed we would be in Melbourne until November.
When we arrived home Regional Victoria went into stage 3 lockdown, and travelling back and forth became vastly more complicated, but I would not trade being home for anything as simple as ease. Thankfully we have also been able to have the rest of our children for a weekend and now a school holiday period, enabling us to bond and become stronger as a family.
Due to the genetic nature of Hailey’s condition, we have a precedence set for her generation, which has resulted in the diagnosis of our baby Rylee as well.
This will mean Rylee will also require a BMT in the future, and testing has begun as well as the search for a donor.
Our journey with this condition is far from over. I have often felt as though I am living a nightmare. The only comfort I can garner is the knowledge that Hailey has recovered so well. I too will require ongoing monitoring to ensure I do not develop any condition such as leukaemia.
This situation is certainly not unique to us, and I now know so many families in desperate need of help and guidance. To them I say; reach out!!
There are so many wonderful organisations like Redkite full of amazing people just desperate to help in any way they can, to provide some semblance of comfort. Do not be shy to say you are struggling!
When we were having financial issues, Redkite paid some bills and provided food vouchers. I have been up, down and all over the shop this year and the one thing which has helped more than anything is the unwavering and incredible support provided by the Royal Children’s Hospital staff and the wonderful charities like Redkite.
No amount of thanks will ever be enough.
Above Inset Image Credit: The Royal Children’s Hospital.
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