A remarkable family’s fight against a rare form of children’s cancer

Dr Seong Lin Khaw, clinician researcher and paediatric oncologist, was awarded the inaugural Children's Cancer Foundation Clinical Research Fellowship in 2017 – a $1.37 million research support package over 4 years. Dr Khaw is investigating new treatments for high risk Acute Lymphoblastic Leukaemia (ALL).

This is Cassandra Howcroft’s story about her son Lochie’s battle against Philadelphia +ve, a very rare form of ALL and one of the very high risk subtypes which Dr Khaw is investigating. “Through my Fellowship, I work with individual patient leukaemias in the laboratory to develop more precise and effective treatment for children with very high risk ALL, particularly with the use of newly developed, targeted drugs, such as venetoclax,” said Dr Khaw. “ We are hoping to understand mechanisms by which Ph+ ALL can escape standard therapy, as well as the role of novel therapies such as BH3-mimetics like venetoclax in improving outcomes."

The unthinkable impact of testing blood

On New Year’s Eve 2017, my seven-year-old son’s face started drooping.

We called an ambulance and Lochlan (Lochie) was taken to Maroondah Hospital where he was diagnosed with Bell’s palsy. Unfortunately, at this point no blood test was undertaken. Lochie was prescribed steroids and we were told to come back for a check-up the following week.

Lochie started experiencing headaches, leg pains and was pale. I knew something was not right. I took him back to the hospital, then to my GP and eventually a paediatrician. Still no blood tests at any of these visits.

On January 28, I took Lochie to The Royal Children’s Hospital. I thought I was going to be told “he is fine” and sent home again. How wrong I was.

After some blood tests, the doctor in emergency took me into a room where I asked to sit on a comfortable chair. I heard the word “leukaemia.” Everything else was a blur.

A life-changing diagnosis: Acute Lymphoblastic Leukaemia

The Bell’s palsy Lochie was originally diagnosed with on New Year’s Eve was in fact cancer. It broke my heart that Lochie had had cancer for 28 days, without us knowing about it.

Lochie started chemotherapy the day after his diagnosis. Four days later we learned he had a very rare type of Acute Lymphoblastic Leukaemia, called Philadelphia Positive (ALL Ph+) – only 2% of children are diagnosed with ALL PH+.

The news was devastating. This meant Lochie would have a much more aggressive treatment plan with unknown, additional risks and effects on his little body.

He was started on an inhibitor drug (a targeted cancer drug, which blocks cancer growth). Unfortunately, the first round of treatment failed. The inhibitor drug wasn’t working. He was switched to another inhibitor drug and two weeks later we received the good news that it had significantly reduced the cancer and our little boy was on track to be in remission by the end of the second round.

If Lochie didn’t go into remission, he would have to have a Bone Marrow Transplant. Our hopes were shattered at the end of the second round of treatment when we were told there were still signs of the cancer. Lochie was having a transplant.

As Lochie’s younger brother, Aidan (aged 5) was not a match, the doctors had to go the bone marrow transplant registry to find a suitable donor.

Moving the family forward during cancer treatment

Our son having cancer was scary, but this felt like a whole different level for us. It felt like there was a big black cloud looming and absolutely no light.

With many questions about the transplant, we met with our head oncologist. She had some good news. She’d taken another bone marrow aspirate, to test the levels of leukaemia in Lochie’s body, two weeks prior. He was not on chemotherapy at the time, but miraculously, had gone into remission. We couldn’t believe it.

The black cloud had lifted and for the first time since diagnosis things were working. Lochie did not have to have a bone marrow transplant. While remission was a long road ahead, we were on the right track.

Lochie’s next round of treatment consisted of 3 months of high-risk chemotherapy blocks and we had to stay at The Royal Children’s Hospital for approximately 97 days. Art Therapy and Music Therapy, in-hospital services funded by the Children’s Cancer Foundation for over a decade, were amazing therapeutic support for Lochie during the long days spent in hospital.

Lochie’s treatment was starting to take a toll on the whole family. Aidan had started Prep without his big brother by his side. Andy and I slept apart for 6 months giving each other updates at the passing of the baton at hospital.

I have remained strong and positive throughout this whole experience; I have to be, for Lochie, Aidan and Andy. It wasn’t until we finally went home for 3 weeks in June that the realisation of our experience and situation really hit me.

We had left the safe bubble of the hospital – Andy and I were now the nurse, cook, cleaner and carer, and the pressure was intense.

We are now back at The Royal Children’s Hospital, but for how long we do not know – we are eleven months into his two-year treatment.

Lochie’s diagnosis has changed our lives forever.

The positives we take from this horrendous experience are that we now have a greater appreciation for the here and now – our kids are our number one and we don’t sweat the small stuff.

 


Thank you to Cassandra, Andy, Lochie and Andy for sharing their story with the Children’s Cancer Foundation. If you would like to know more about Dr Khaw’s world-class research program, please contact us.

Lochlan and his family at The Royal Children's Hospital