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Ada Lion Heart

  • Service Details     30 April 2021
    Posted by: Daniela de Bruyn

    Hi everyone,

    Also just sharing the service here. The live-stream link will be shared separately later.

    Service for Adaline Wetherell

    Monday 3 May, 11 am

    St Matthew-in-the-city

    Cnr Hobson & Wellesley Streets

    There will be a Livestream link that will be shared separately. The live-stream recording of the service can be viewed in real-time or during the few days after the service.

    Getting to St Matthew-in-the-city:

    Parking is available at Wilson's car park beside the church (tends to be full of construction vehicles). Or at Sky City (there is a pedestrian exit by Sky City theatre where you come out opposite the church).

    There is a lot of construction in the city so allow for extra travelling time to the Church.

    Dress Code:

    Funeral wear with a touch of pink or a dash of purple or a sparkle.

    Food:

    A special request that each family group or 4 people bring a plate of finger foods to share. Bring food that doesn’t need heating, cooling or special equipment or skill to serve. Also, label for allergies (gluten, soy, dairy, legumes) and mark vegan or vegetarian where suitable.

    Small children are welcome and encouraged to come but must be supervised. There will be a special play mat for them and they are welcome to bring a toy (no battery-operated or singing toys please).

    Anyone who wants to speak or do a reading to please contact:

    Rev Helen Jacobi: helen@stmatthews.org.nz

    OR

    Pip Callinan: pncallinan@gmail.com

    This is a ceremony in honour of Ada’s life. While we respect and honour our loss and sadness we are also coming together to celebrate Ada’s life and spirit.

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  • 27 April 2021     29 April 2021
    Posted by: Daniela de Bruyn
    Main image

    On Tuesday 27 April at around 11:30 pm, Ada's spirit left her earthly body. Her battle came to an end as she peacefully passed while being held in a space of immense love and care from her parents and collective prayer and energy from all over the world.

    We learned so much about life from our fierce little fighter and her family's brave battle over the past year. Thank you for the gift of knowing you and for letting us in on this life-changing journey, Ada with your Lion Heart spirit! We will honour your memories, your journey and your spirit in our hearts forever.

    Thank you for the support from everyone on this page. Every donation, kind word, kind act, loving thought and prayer from each of you really made a difference.

    We will post an update about the details of the service here shortly. It will likely be on Monday 3 May around 11 am NZ time. There will be a service at St. Matthews in Auckland city and a live streaming link. Official details to be confirmed soon.

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  • Update from Ada's Mum     15 April 2021
    Posted by: Daniela de Bruyn
    Main image

    Hi everyone, the last couple of days have been incredibly hard. My birthday was a bad news bear day, and after taking some time to come to terms with things and spend time as a family, we are ready to share with you all.

    Ada's blood tests on Friday showed her blood cell counts have all dropped, which means the cancer has taken over the bone marrow and normal blood cell production has slowed or stopped. Ada also has symptoms that show the brain and other metastases have progressed.

    We chose to transfuse platelets so that Ada wouldn't develop a bleed over the next few days, and those platelets will last a few days but then the body will use them up as part of its normal function.

    We decided not to transfuse red cells, the cells the body needs for oxygen. Having such low red cells makes the body sleepy and is not distressing to the body, and we feel it is best for Ada to let this natural process in the body be, rather than transfusing again and again and have her suffer other more distressing symptoms of disease progression.

    That being said, we have prepared for seizures and other emergencies too.

    Ada is on a continuous IV pain pump and has short periods of being awake, and we are making the most of them. She is more comfortable than she was on the weekend, and her little bossy spirit is still strong and clear.

    We have not given up in any way. We continue to support her body as best we can with alternative and modern medicine. More importantly, we continue to strengthen and support her spirit, and our own as a family. All four of us are very raw, experiencing a roller coaster of emotions every hour, and our bodies are starting to feel the strain of it all. We are still laughing at farts, we take sunrise and sunset walks when we can, we hug a lot and play Duplo every day.

    You have carried us this far, with random acts of kindness, dad jokes, thoughtful messages and incredible love. We are so grateful to you all, and knowing you will carry us and hold us in love in this new phase of our journey is an incredible comfort❤❤❤

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  • Page extension     9 April 2021
    Posted by: Daniela de Bruyn

    Thank you for everyone's continued love and support throughout this journey. Ada and her family is bravely battling onward.

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  • Update from Ada's Mum     12 February 2021
    Posted by: Daniela de Bruyn
    Main image

    Hello all, almost exactly a year on from that terrible week when we first heard the word Neuroblastoma, and Ada ended up in PICU with open-chest surgery.

    This update is not the victorious turn-around we all hoped for. Ada's cancer has relapsed, a tumour is growing between the skull and brain. Relapse, while she is still on the treatment protocol, is very grim news, it means this thing isn't responding to the best options available.

    We will do some further scans and biopsies to help us identify what the options are but at this stage, it's all just therapies that can buy a bit of time. The professionals at Starship continue to be amazing, and at the moment they are doing their best to help us get time away as a family while Ada is still active and well.

    Words seem so horribly inefficient at this point, so will just say that we are absolutely shattered, but our focus is on making the best memories we can with the time we have left.

    Thank you for carrying us over the last year, and thank you for being with us and being there in this with us too.

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  • Update on how our AdaLionheart is doing     22 January 2021
    Posted by: Daniela de Bruyn
    Main image

    After almost a year of intense treatment, Ada and her family bravely continue with this boss battle.

    Latest scans showed that areas that remained "active" before radiation treatment have gone but there is a faint trace remaining active above her left eye. So far there's been positive progress, but Ada is not yet in the clear. The faint trace that remains has a gene mutation that makes it so aggressive that even if a tiny bit remains it can become bad news very quickly. Her Oncology team is optimistic that the next 6 months of therapy (a combination of bone marrow boosting, immunotherapy / chimeric and high dose Vitamin A therapy) will deal with the small traces.

    Ada's Mum, Dad and sister continue this relentless journey. The fight takes a severe strain on every aspect of their life. Thank you for your kind support, love and prayers while they power through the next few months.

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  • Ada's progress so far     13 June 2020
    Posted by: Daniela de Bruyn
    Main image

    Ada recovered well after her big surgery where they removed the primal mass above her kidney. So well in fact, that she was able to jump right into cycle 5 of her Chemo treatment. Chemo always comes with the very intense after-effects that are a big battle in its own right.

    She is currently undergoing a marathon of tests. So far, tests have confirmed that her heart is strong enough to continue treatment. Tests also showed that she has lost some of her hearing due to the previous chemos. This is expected to get slightly worse and then stabilise. She will need a hearing aid in future, but that will be sorted after treatment. For now, her family decided to start learning Sign as a family.

    This is testament of the way in which they have bravely taken on this battle, climbing every cliff with the strength of a Lionheart, facing every challenge with openness and agility to adapt. But it is not easy.

    Great big thanks for everyone's ongoing support. Your donations make child care and help at home possible and are relieving some of the overwhelming stress that this young family is facing. This helps them redirect their strength to where it is most needed: fighting for their child's life. THANK YOU!

    Keep an eye on Ada's journey blog for updates.

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