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Amelia's papillary tumor of the pineal gland journey

  • 08/07/2025

      8 July 2025
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    We’re absolutely blown away 🇳🇿❤️

    I’ve been trying to find the right words to share this, but honestly there just aren’t enough. How do you truly say thank you for something like this? How do you put into words the way this has made us feel?

    We are shocked, blessed, and completely overwhelmed by New Zealand’s kindness, support, and love. Emmett’s incredible haircut fundraiser for Bodhi and Amelia has raised over $33,000– something we never could have even imagined.

    Because of all of you, for the first time in 8 years, we are officially debt free. That alone is life-changing. We’re also hoping to take the kids away for a little weekend at some stage – something we’ve never been able to do. Just to breathe, reflect, and reset together as a family. That means more than you will ever know.

    To every single person who donated, shared, or sent such kind, encouraging messages – thank you. Truly. From the deepest part of our hearts. Even saying "thank you" feels so small compared to what you’ve given us, but please know how much it means.

    To Emmett – you’re such an incredible, big-hearted young man. And to your amazing mum Kylee Lawrence – thank you for raising someone so special and for standing beside us with so much love.

    And to 7 Sharp thank you for shining a light on this beautiful act of kindness and helping our families share it with everyone.

    We will never forget this. We’re still in awe. ❤️

    Lots of love

    The Neil family xx

    Bodhi’s Journey

    Amelia's Journey

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  • 7 sharp

      4 July 2025
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    https://www.facebook.com/share/v/1Avn7QkzTa/?mibextid=wwXIfr

    Feeling so lucky to share this,

    Emmett and his beautiful mum Kylee Lawrence on 7 Sharp talking about his incredible shave fundraiser for Bodhi and Amelia. Emmett, you’re such an amazing young man, so generous, caring, and inspiring. Thank you for shining such a light. Your kindness means more than words could ever describe🫶🏻🫂

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  • 30/06/2025

      30 June 2025
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    💭A Little Neil Family Update 💭

    7 Sharp popped in to see us about Emmett’s big shave fundraiser!

    I’ll be honest—I was not mentally prepared for a video interview 😅 I somehow thought it was just going to be a few photos and a bit of back story!

    We got through it though, and we’re so grateful they’re helping share Emmett’s mission and our family’s journey.

    Now I’m bloody anxiously waiting to see how it all comes out 🤣

    We’ll let you know when it airs... "maybe" 🙈😂

    On top of that, little Molly is unwell with what Bodhi had and has had some wild fevers—hopefully she starts feeling better soon ❤️ And now Piper’s started to get a cough too.

    Thank you all for the love and encouragement—it means the world to us ❤️

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  • 18/06/2025

      27 June 2025
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    Quick stop at the warehouse today, picked out some new school supplies for all the girls 🥰

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  • Emmet inspired by shaved for a cure

      16 June 2025
  • 26/05/2025

      26 May 2025
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    Amelia had a meeting with her neuro surgeon today . The good news is her tumor hasn't grown anymore since her last MRI 5 weeks ago.

    Neuro-Oncology has said there is no rush to do anything at this stage . Surgery is the same with no rush to remove the tumor at this stage, as she is able to live a "relatively normal life "

    Moving forward:

    Continue the watch and wait approach.

    Amelia is still definitely experiencing symptoms, headaches , eyes , "eye brow bridge pain " brain fog " memory, mild moods , concentration.

    The frustrating part is that a lot of these symptoms felt by people with pineal tumors / cysts are dismissed and not understood within the majority of the medical world .

    The hardest part will always be the unknown, waiting , it's a very gray area, and no one truly understands the PTPR in regards to growth rates , treatments, and procedures.

    We as a family are still very much in a limbo , in 6 months, it could do absolutely nothing, or it could "quadruple" in size, leading to surgery/ treatment, etc.

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  • 23/04/2025

      23 April 2025
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    Amelia's mri results came back, and they've said her tumor has grown 2mm since her last mri, March 5th.

    There are no issues with fluid .

    Plan moving forward is to book in another MRI in 4 weeks' time for brain & full spine & a meeting with her neuro surgeon in starship for a review / plan moving forward pending results.

    They've also let us know she is now able to run about play on the trampoline! As her ETV surgery is still stable. So she's over the moon about that.

    Amelia has asked to be present for the meeting, which is great , she is such a trooper ❤️‍🔥💪🏼

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  • 16/04/2025

      17 April 2025
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    Amelia’s having an MRI today - to see if her throbbing pain in her head and face is related to the tumour.

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  • 24/03/2025

      27 March 2025
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    Amelia’s early birthday present

    Guinea pigs 🫶🏻

    Still the wait and see approach at this stage in terms of treatment moving forward.

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  • 26/03/2025

      27 March 2025
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    Amelia had another follow up eye appointment today

    They're happy nothings changed

    next app in 6 weeks unless something changes between here and then.

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  • 28/02/2025

      28 February 2025
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    So at Amelia's eye appointment today , they've found she still has optic nerve swelling, and only one of the eyes is " slightly " better . The pressure from the tumor/ fluid is causing this , the team has decided to hold off on a medication to assist the pressure , but to order an urgent MRI for next week sometime so they can see if the surgery they've done is still working how it should be / also to check the growth of her tumor .

    With so little research and statistics duet o the rarity of the tumour not really is the unknown even for the specialist as they don’t really know what to expect

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  • Amelia made the front page

      26 February 2025
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    Amelia made the front page !!!

    Thank you so much Stratford Press for getting in touch and getting her story out there ✨

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  • 14/02/2025

      16 February 2025
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    Friday we received the biopsy results

    Amelia has Papillary tumor of the pineal region (PTPR) is a rare neuroepithelial brain tumor

    It is benign - thank goodness - which means it won’t spread to other organs.

    However due to the rarity of this type of tumour. An action plan moving forward isn’t quite so straight forward. There is very little research and occurrences worldwide.

    Nor do we currently possess the tools here in nz to perform the surgery

    Amelia’s surgeon will be collaborating with surgeons and specialist internationally to come up with a plan.

    The surgeon will be in touch in two weeks time hopefully with a plan moving forward.

    Chemotherapy and radiation are also a likelihood potentially.

    Thankfully due to the two biopsy’s taken the tumour currently is small. However it will continue to grow if left. Which will eventually cause the migraines and vision mobility issues. Which lead us to put initial optometrists visit.

    As the brain fluid will be inhibited from flowing normally swelling will occur and the ventricles will again become

    The surgeon has commended Mac and Courtney on their vigilance in getting her seen. And had it not been an optometrist visit and a doctor instead may have been missed untill a later date.

    Thank you all for your ongoing support and well wishes means the world to us.

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  • 13/02/2025

      14 February 2025
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    Amelia up at the hospital awaiting her MRI

    To test her spinal fluids and for lesions/growths

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  • 11/02/2025

      11 February 2025
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    Amelia got her staples out today

    She’s doing well , such a trooper

    Still awaiting test results

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  • Amelia - Home

      9 February 2025
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    Amelia is doing great , and it's been AMAZING being home. They got discharged yesterday

    Follow-up care is to get her staples removed , an eye appointment, an MRI of her spine , and a wait for the results. Once we have the results, the starship will make a plan moving forward . They mentioned we will need to go back to starship in about 2/3 weeks !

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  • 05/02/2025

      5 February 2025
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    Amelia is doing great tonight.

    She's talking , had a shower , and perked up a lot more , she is eating and drinking very well now .

    Her head is sore where they entered , and overall, she just feels a bit groggy . She has a slight temp , which is her bodys natural inflammatory response to surgery, which is to be expected .

    She's doing much better than they anticipated! Her MRI today went well & the Dr's are very happy with the imaging . We are still waiting on the biopsy results, and by God, it's taking what feels like far too long !!

    Amelia received a package this afternoon with a GIANT squishmellow, a gorgeous nightlight & a box of favorites ! So amazing & kind whoever you are. She was chuffed & is in love with her squishmellow , ( she's obsessed with them !!! )

    Thank you so much !

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  • Morning after sugery

      5 February 2025
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    Amelia’s not feeling so great today

    She is really quiet- quite emotionless - spacing out , she’s quite muted in terms of body language and communication

    We are hoping it’s simply a case of not feeling so great after sugery yesterday and being sore

    She has another MRI today - to have a look at things

    And patiently awaiting biopsy results.

    As you can see in photos two sites with staples. On her head. And she’s quite swollen today.

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  • Radio lollipop

      4 February 2025
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    Last night had the pleasure of being on a video calll with Courtney and Amelia when they were surprised with a special visit from @radiolollipop

    They were amazing

    How very special ! Amelia loved it. She chose to have them play one of the songs form the troll movie

    Silver linings -

    These are the moments we hold onto when weathering the storms

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  • Rest now

      4 February 2025
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    Amelia is currently resting It’s been a bloody big day - we will have more news once the doctors/surgeons do there rounds tommorow and results come back over the next few days.

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  • 1000 words

      4 February 2025
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    A picture speaks 1000 words

    To look at just looks like a cute video call between siblings

    But look closer the surroundings - hospital beds and hospital food

    However the truth of it is.

    This is two siblings out of 5

    one in Auckland starship awaiting surgery tomorrow, with mum away from home.

    10 years old

    And the other is at New Plymouth base hospital with dad undergoing a routine visit that’s been a new normal since being diagnosed with Leukaemia late 2023

    3 years old

    The other three kids are at home with Nani

    Thank you all so much for your ongoing support.

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  • 04/02/2025

      4 February 2025
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    Amelia had surgery today

    Will update as we know more

    To biopsy growth and or potentially remove if safe and drain the brain fluids

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  • 03/02/2025

      3 February 2025
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    We would like to personally thank EVERYONE ! For all of the messages , sharing experiences, support, likes , and sharing Amelia's page ! And mostly all of the love and positive vibes & prayers !

    Amelia's headaches haven't been too bad with lots of rest between things. And having her bed elevated has helped a lot .

    Her speech is still the same , forgetting words. Mixing words & or just can not finish the sentence properly. That frustrates her a lot.

    She's seen the physio for a pre surgery assessment. Her coordination is off , and her left side reflex and functions are less than her right side.

    This is why she is having trouble at times walking and tripping over.

    This all should subside after her surgery .

    Her surgery is tomorrow & she is second on the list she should be going in around 11 or 12 .

    They will enter through her skull at two points at the top of her head , going through two ventricles .

    Where they will clear the path for her CSF ( fluid ), they will also make a small hole in the " floor of the brain " for it to drain and be absorbed. They will also biopsy and / or remove the growth if they can do so safety.

    Another positive note is that all of her blood tests , markers & extra tests have come back clear of any findings .

    Amelia would also like to add some extra excitement she has a wiggly tooth 😂 she's not had a tooth out for years ! 🙈🦷

    Courtney and Amelia have some meetings later on this afternoon - so I I’ll update again later this evening

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