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mackenzie's story
My husband and I first noticed Mackenzie's abdomen was large, distended and firm to touch. She had also put on 600g within less than a week. At first we thought it was built-up gas, but as days passed we noticed her tummy wasn’t softening or getting smaller. Our GP sent us to emergency at the Queensland Children’s Hospital to be examined
Mackenzie had an x-ray and an ultrasound which showed she had masses in her adrenal gland and liver. A urine test and MRI ultimately diagnosed her with neuroblastoma. She was two weeks and five days old.
She started her first round of chemotherapy within days of diagnosis as the neuroblastoma had already spread to her liver. There was also a small amount in her bone marrow which was growing quite rapidly based on her fast weight gain and size of her abdomen.
Since diagnosis she has completed four rounds of chemotherapy within her short three months of life. As Mackenzie is a baby she is unable to communicate with us, which has been our biggest challenge. Unfortunately, she is unable to tell us when she is not feeling well - we just have to gauge based on her cry or behaviour.
"We are navigating the normal challenges that come with being new parents, whilst also having an unwell child. Whilst it is absolutely not what we excepted, we feel so lucky to be making beautiful memories with Mackenzie, despite her diagnosis." Ally, Mackenzie's mum
Mackenzie has just finished her 4th round of chemotherapy. Recent MIBG and MRI scan results showed that the tumour in her liver has reduced a little, and the liver itself is much improved. The positive results mean Mackenzie's medical team have decided that she doesn't need to do any more chemotherapy. A very small tumour remains in the adrenal gland, but it is too small to remove. The team may consider removal when Mackenzie is 12 months old. For now, she will have monthly check-ups and scans every three months.
Although it is an incredibly challenging time for us, we have so much love and support from our family and friends, particularly Mackenzie’s grandparents. We are so lucky to have both of our families live in Brisbane, so they are just a short drive away.
As they say, it really does take a village to raise a child and even more so during these tough times. We are also blessed to have the unwavering support of each other and know that both of us couldn’t do this alone. It certainly helps being married to your best friend.
