Hailey and Leah: Coping with cancer & COVID-19

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…

~ Leah, mother of Hailey

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.

~ Leah

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.