Facebook status from Mum.
Camryn had her 3 monthly mri scan today at Starship, best news ever, no sign of the large tumour growing back and no sign of the small tumour growing bigger!! Celebrated with chicken nuggets and the playground. 🥰🥰🥰 This kid is amazing!
Today Camryn had her 8 week follow up MRI. 8 weeks since her last radiotherapy treatment! MRI has come back clear!! So grateful to all the staff at Starship for getting us to this point. The ependymoma which was the large tumour that was cancerous has gone, no sign of it. The small tectal plate lesion tumour that is a bit of a mystery currently hasn't grown whatsoever so that's the best news as well. We will be traveling to Starship every 3 months for the next year, each year after that will be a longer wait between each scan!!
So very glad.
Today is Camryns last day of radiotherapy!! 6 weeks of radiation with a week delay in between because of needing a shunt put in so 7 weeks all up of hospitals. Throughout the whole time Camryn has hardly grumbled or complained showing just how resilient she is. We have done a few fun things for her in between the rain wind and tornados even! As well as lots of dancing and singing in hotel rooms and in the Ronald McDonald house. Our follow up tests are in early September to make sure the radiation done it's job. ❤❤
Surgery this morning went fantastic. She's a pretty pink lady again and was back up walking talking laughing and ordering nurses about within a couple hours of being back in her room. She's absolutely loving being surrounded by her favourite nurses again and will be spending the next 2-3 nights in Starship before coming back with me to RMCH. She has an MRI scan booked in for tomorrow afternoon to check the shunt is doing it's job correctly. Then she has a week recovery before restarting her radiation treatments which she's already half way through! 15 treatments down, 15 to go! ❤❤❤
Camryn is off to Auckland today. She is very excited to be going back to see the staff at Starship and she recieved her first lot of courage beads which she's so proud of.
They are staying in Auckland for the duration of the 6 week radiation therapy.
Thanks everyone for the love and support ❤❤
We have our girl home, she's so happy to finally be back. We have her home until the 26th then a 6 week radiation treatment follows where we will be staying in Auckland for the duration of the treatment. The plan after that is to come home and heal!! We are obviously wanting to stick to our bubble because if Camryn catches any bugs she won't be able to start treatment. Thank you to everyone who continues to support us in this horrible time xx
Photo of our beautiful girl today sleeping off her 5th round of G.A.
Today Camryn had an MRI to determine whether the surgery worked. It did!! She is now not relying on a drain, shes doing it all herself with the help of the etv. We have been moved out of HDU and into her own room where either my self or Dylan are allowed to stay each night with her. Best day of news we have recieved in just over two weeks of being here. Next step is a meeting with the oncology ward for radiation.
Bright eyed and loud mouthed today, always a good sight to see. Camryns booked in for a CT scan tomorrow to check out the ventricles in her brain preparing for a new theatre date this Tuesday coming. This surgery is for an ETV which is Endoscopic Third Ventriculostomy, meaning that because Camryn is still needing help to drain fluids they are going to create a new hole in the membrane to redirect the cerebum spinal fluids and get it all working correctly again. They will also be doing a second biopsy on the tumour thats deeper in the brain as the first biopsy came back with false results. Once we know if the ETV has worked successfully we may be allowed a couple weeks of home time before she comes back to Auckland to start treatment's. We are crossing our fingers this surgery all goes well so we can take her home for a little while to heal in a quiet and calm environment before the next step of radiation. Thank you everyone for your words of encouragement and support , makes us so happy to see how many people Camryn has reached xx
So pleased to see the bright eyes and smile. Thinking of you as you face the tough times and hoping that things start to look more positive for you soon.
Some sad news in the update from Camryn's mum Marni.
"Today we received the preliminary results basically meaning more results to come. Today we received the hardest news ever, we knew it was a possibility but we were obviously not thinking about what it could be and hoping it was just an ugly tumour that they had taken out and we could take our girl home.. Unfortunately what they have discovered is a form of Cancer.
It is called Ependymoma which is a 'rare type of primary brain or spinal cord tumours' We are in the best place for her and they have experience dealing in this type of cancer as it is the most 'common form' of cancer found in young children. Although it is still only 4 or so cases a year. We have a long road ahead of us and we will be meeting with the Oncology department to start radiation in the coming weeks. The surgeons, doctors and nurses have all been absolutely amazing and Camryn is like her usual sass self full of loudness, confidence and has her usual knack for making everyone laugh at her antics.
I hope you can all understand that we would rather not be bombarded by texts and calls as its a really hard time for us to be going through made even more so with this lockdown happening and also our son Ragnar not with us either. I'm truly sorry this is the news we received and I'm now writing about because we all hoped so badly that this was not the outcome we got today."
