My name is Raymond Lo. My wife is Candy. We are Mikayla's family We live in Sydney Australia.
On 5/12/2017, it was the worst day of our lives to date. Our beautiful and cheerful 4 year old daughter, Mikayla, was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma).
Mikayla started with some very innocent symptoms such as "sleep talks & laughs", separation anxiety, and un-natural smiles few months prior to the diagnosis. No one would think that she has a tumour in her brain. In mid November, we were told by the pre-school teachers that she was walking "funny". She kept bumping her head at the same spot and occasionally she would lose her balance while changing directions. We paid some attention to her until the following week, her teachers were very concerned that she was not only becoming very clumsy, but she also seemed to have reduced coordinations. The teachers said she was not at her usual self. We continued to observe her symptoms. In the next few days we also found that she was not looking at us straight into our eyes, she had slower reactions when we called her, and she seemed to have some jerky movements at sleep especially at the time when she "sleep talks". On Sunday 3/12/2017, we took Mikayla to the doctor. The doctor ran a few tests, she advised us to take Mikayla to a paediatrician urgently. After much consideration, we decided to take her to The Children's Hospital at Westmead Emergency.
When you presented yourself to the Emergency, you were sent straight in with a bed, you know that is not a good sign. Mikayla was taken in straight after being triaged. She was examined by the emergency doctors and a neurologist. She was sent for a CT brain and on the same night, we were told that Mikayla has a 3-4cm lesion at her brainstem. At that point we were hoping that it was not something too sinister to deal with. 2 days later, she was sent for a MRI brain. Later that night, we were taken into a room, with Mikayla's neurosurgeon, alongside with 3 other doctors, and the nursing team leader. We were told that Mikayla has an inoperable tumour called DIPG at her brainstem pons region. The long-term prognosis is not promising. She was given less than 2 years of life. In fact, the average life expectancy is 6-9 months from diagnosis. From that point onwards, I could not recall our conversation with the doctor anymore.
DIPG is a type of very rare brain cancer which only affects approximately 10 kids in Australia. Unfortunately there is no cure. For more information about DIPG, go to the DIPGregistry.
Mikayla is now on high dose of steroid and she is undergoing radiation therapy hoping to shrink the tumour and reduce her symptoms. We are also seeking some other therapies, and potentially with a trial drug if her biopsy shows any positive results towards a particular chemotherapy drug. We still have hope that her cancer can be cured.
Candy is currently off work looking after Mikayla, and I have reduced my work hours to spend more time with Mikayla. We have decided to establish a crowdfunding account to fund her medical expenses, in particular the non-government funded / overseas chemotherapy drugs. We estimate the medical expenses may cost over $AUD100,000 or more. We desperately need to raise this amount of money because her chemotherapy may start in the next few weeks. We hope that this fund raising campaign will be successful so that we can spend more quality time with Mikayla without the stress of worrying about the finances. Your support and generosity will get us through this difficult time more than you can ever imagine.
Raymond, Candy, Jonathan, Mikayla