“I am only one,
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything,
I will not refuse to do the something that I can do.”
As with a number of children featured on ‘Guitars 4 Good’, little Mia has neuroblastoma.
She was diagnosed with Stage 4 neuroblastoma in May 2016.
Mia was first unwell in April 2016 after suffering with vomiting and bouts of fatigue.
Her mum felt a little lump in her belly and took Mia to their GP who referred the family to Prince Charles Hospital (in Merthyr Tydfil) for x-rays and tests.
The tests sadly confirmed that the lump was cancerous and she was transferred to Noah’s Ark Children’s Hospital for Wales in Cardiff, which has a state of the art children’s oncology unit on two floors – Rainbow and Rocket wards.
Since being diagnosed, she’s been through a multitude of aggressive treatment and procedures including 3 months of intensive chemotherapy, surgery, a stem cell transplant and radiotherapy.
Now 5 years old and with just 4 cycles of immunotherapy left, she’s tolerating the antibody infusions well. If scans reveal that there is no evidence of disease at the end of immunotherapy, this will mark the end of her frontline treatment in the UK. Following this, Mia’s family would like her to access a clinical trial as additional cancer therapy in the hope that it will help prevent a dangerous relapse. Trials abroad can cost hundreds of thousands of pounds which is why they have started to fundraise with Solving Kids’ Cancer.
“This monster will not beat us and we will do everything in our power to make sure it stays away” -Josh and Kirsty, Mia’s Mum and Dad.
Below are the links to Mia’s Solving Kids' Cancer ‘JustGiving’ page and her Facebook and Twitter pages.
(In her mum's words)
This is Lottie's journey. She had the devastating diagnosis of Stage 4 Neuroblastoma on the 30th June 2016. She was just 2 years old.
There were no signs or symptoms previously, she has always been a healthy little girl, happy, active, playful and bright - no causes of concern.
She caught a tummy bug, and it quickly spread to Mummy and Daddy, but everyone got over it and Lottie remained the same, just under the weather. She went to the childminder, and her sister mentioned Lottie's tummy looked different that day.
Mummy collected Lottie early and went to the GP. The GP sent us to the hospital, and they did an X-Ray and said Lottie had a blockage in her bowel and was most likely malnourished. Lottie's favourite food was broccoli and sweet potato curry, she's always had a broad spectrum of healthy foods. They then did an Ultrasound....
Lottie and Mummy laid on the bed, and the ultrasound immediately showed a mass. A large black horrible looking mass. It measured 12cm.
Mummy and Daddy were told it was likely to be cancer. Within the hour we were placed in protective isolation at the local hospital and the Royal Marsden, Kings, St Georges and the Evalina were all consulted regarding Lottie's high blood pressure and increasing abdomen.
3 days later and a transfer to St Georges was complete. Mummy and Daddy prepared for a biopsy, a hickman line fitting and a bone marrow aspirate. Nanny slept on the floor at the end of Lottie's bed, whilst Mummy slept in a chair and Daddy went home to look after Georgia and Jack. We were devastated, but had to remain strong.
Lottie went downhill very fast and was placed in PICU at St Georges, the mass was squeezing her lungs, and affecting her blood pressure. It was splicing her diaphragm and she could no longer breathe on her own.. We waited 3 agonising days for a diagnosis. No Chemo can start until a diagnosis is reached.
On the 30th June at 1:15pm Dr Zacharoulis delivered the news. Neuroblastoma. Chemo was started that night. Immediately Lottie improved,
7 days later she was transferred to The Royal Marsden. 7 rounds of chemo, 3 kidney function tests, numerous blood test, countless nights in hospital. X-Rays, CT Scans, Bone Marrow aspirates, General anaesthetics, NG tubes and so much more later we are fighting stronger than ever for our baby girl.
On the 25th of October Lottie had the now 3.6cm tumour removed. A gruelling 12 hour operation made successful by the amazing team at St Georges. Lottie then spent 7 days in PICU, this timed sedated on a ventilator to keep her safe.
Our next steps are high dose chemotherapy, and stem cell transplant. Then comes radiation, and finally Immunotherapy.
Neuroblastoma is a nasty disease, aggressive and harsh. It has a high rate of relapse and is the rarest form of childhood cancer.
We will fight. xxx
The link to the right will take you to Lottie's page on the Solving Kids' cancer website.