Help Make Valentinas final wishes come true

Hi there my name is Bec and I’m Valentina’s Aunty. I’m funding for Valentina and her mum Carly

 

Our story: Valentina is an 18 month old little girl with a rare genetic condition called Li-Fraumeni Syndrome or TP53 and most recently had major brain surgery on the 10 December 2021 and was later diagnosed on the 15 December 2021 with Choroid Plexus Carcinoma a rare form of Brain Cancer which means over the next 6 months Valentina is going through the most complex and intensive Chemotherapy that an 18 month old can have

 

Li-Fraumeni syndrome (LFS) is an inherited condition that is characterized by an increased risk for certain types of cancer. Affected people often develop cancer at an earlier age than expected and may be diagnosed with more than one cancer during their lifetime. It is caused by a mutation in the TP53 gene.

 

Going back to October 2021 was a healthy little growing girl meeting all her milestone markers and the happiest smiley toddler you'd ever meet we had her annual MRI and 4 monthly abdomen ultrasound for monitoring of her TP53 mutation, all was well she settled to sleep nicely under General Anasthetic, after 2 hours of waiting in the day surgery ward for her return I had asked the nurses if everything was ok and what might be taking so long they made a call and advised Valentina was coming out of recovery now she would be here shortly, 30 minutes slowly ticked by as we waited anxiously for her return only to see her not thinking about her scan. When she came through those doors it was immediate relief she's ok straight in for some cuddles with her.. until I turned to begin being filled with anxiety as i notice there were two doctors at the end of her bed nervously looking at us only to be asked if they could please have a moment in private to discuss what they have found in the MRI. My anxiety grew as we got closer to the room clutching Valentina as tight as comfortable wishing, hoping, praying everything was going to be ok. We sat at the table across from the doctors and they started to explain they had found a leison in Valentina's 3rd Ventricle in her brain approximately the size of the end tip of your pinky finger. The rest of that short meet was a blur only to find out we needed to wait for 6 more weeks for a follow up Brain MRI to check on the leison.

6 weeks anxiously dragged by our next meeting was another blur however we had a plan that was if it grew at all even half a millimetre they would not hesitate to remove it asap.

 

6 weeks came and our scheduled MRI was done on the 7th Dec 2021 results to be given the morning after at 8:30am 8th Dec 2021 with our Neurosurgeon and Registrar we sat and were advised the lesion had grown almost 2mm in 6 weeks and was now classed as a high growth tumour and was to be removed by Brain Surgery to which they followed is scheduled for the 10th Dec 2021 only two days later.

 

On the 10th Dec 2021 Valentina had Brain surgery to remove the tumour, the surgery went well they removed all the tumour they could and sent it for Analysis, we had a 7 night stay in hospital and Valentina had a drain in her her head for 5 days to allow for her spinal fluid to drain clear before removing it.

 

On the 15th December 2021 they had confirmed her tumour was Malignant and it was called Choroid Plexus Carcinoma.

 

Choroid plexus tumors occur in the brain within areas called the ventricles. The ventricles contain cerebrospinal fluid that surrounds the brain and spinal cord.

 

• Choroid plexus tumors are rare, representing only 3 percent of brain tumors in children.

 

• They account for 10 to 20 percent of brain tumors in children under 1 year old.

 

• Girls and boys are equally affected.

 

• The majority of choroid plexus tumors are choroid plexus papilloma or choroid plexus carcinoma. Choroid plexus papilloma is often easier to treat.

• Choroid plexus carcinoma: It accounts for between 10 to 20 percent of all childhood choroid plexus tumors. It grows aggressively and is more likely to spread.

 

As of right now Valentina starts her Chemotherapy on the 31st December 2021 and will continue treatment for 6 months, what happens after that we won't know until we get there.

 

 

The purpose of this fundraiser is ultimately to aid the out-of-pocket costs over the course of treatment. As well as to reduce financial stress from her Mum and family as she takes a step back from work unpaid to focus all her energy on Valentina's treatment and with the worsening of our COVID situation in Adelaide currently there is only 1 parent able to be with their child during treatment and you cannot switch between parents at this stage.

 

Thank you for taking the time to read and thank you so so much if you have been able to donate even if it's only $2 that could go towards a parking ticket or loaf of bread.