https://www.facebook.com/Avasneuroblastomajourney/

On the 7th April 2018, our beautiful niece Ava was diagnosed with Stage 4 high risk Neuroblastoma; a very rare and aggressive form of childhood cancer.

Ava's cancer has been classified as stage 4 high risk and is very aggressive. It’s spread across her body; a primary tumour in her abdomen in the adrenal gland above her left kidney. This tumour is so large is half the size of the liver and is squashing her kidney completely. Amongst several other tumours, the cancer is in the bones themselves, as well as her bone marrow, blood and lymphatic system. It’s even spread in her skull bones and eye sockets.

Ava's treatment is well underway, having undergone many rounds of chemotherapy, multiple surgeries, central line and NG tubes placed, ovaries removed and harvested, stem cells harvested, blood and platelet transfusions and too many medicines and blood tests to count.

She has long way to go however; her treatment is likely to be ongoing for approx.18 months - 2 years. That’s with the hope she will after this point go into remission of cancer.

Along this journey she will need more chemo, a stem cell transplant, surgery to remove the primary tumour, months of radiotherapy and then 6 months of immunotherapy.

The sticking point with Neuroblastoma is its tendency to reoccur. The rates of relapse following remission are high; approximately 75%. For those 75% who then relapse, survival rates are so low second time around that almost all are terminal.

There is hope! Memorial Sloan Kettering hospital in New York have been trialling a drug which so far has had brilliant results with keeping children cancer free for years longer than ever before. Memorial Sloan Kettering has the world’s very best Neuroblastoma specialists and experts - leaders in their field.

This vaccine is currrently in phase 2 trials - this trial being the use of the drug on patients who are in remission with Neuroblastoma (had it first time). Although Ava has a long way to go on her journey now, it’s likely that this drug will not be available to her when she completes her treatment.

My Sister, Leanne and her partner James, are doing all they can to raise enough money to cover the cost of getting to the US to get the vaccine. The total cost of travel and treatment is approx. $300,000 AUD.

Becks, Kirsty and I have signed up for the 40-mile Ramsey Bakery End2End walk on Sunday 16th September and hope to raise as much money as we can to support Ava – please please donate whatever you can spare 😊

Thanks in advance

Becks, Kirsty & Chris – Ava’s Army (Manx Division!)