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5 year old Alivia has a rare cancer

  • Beginning of May 2019

      8 October 2019
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    May began with 7 daya of Vitamin G and red blood transfusions. Liv and her whanau have managed a trip to OranaPark.....

    While Alivia was 'under' she had an MRI and had a feeding tube put in her nose. She has no desire to eat, and hates the flavor of everything! Bead count #205. Mothers day, not where anyone wants to celebrate it.

    Liv had one chemo drug through her for an hour and the second drug go through for two hours. That had to be repeated every day for five days. This chemo is alot stronger and knocked her around, yet she was still trying to smile,?!! Be kind out there guys

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  • End of April 2019

      8 October 2019
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    On the 19th, Liv had heft second round of chemo. She's amazing, with strength beyond her years, she stays positive all while practicing writing letters and phonics. Rebecca, Liv's mum has kept us up to date, on not only the progress, but the incredible support she's been having from her own mum, who has been with them, since March 9th. Ronald McDonald House has amazing support too. Fulton Hogan turned up to cook dinner for everyone. Its not advertised, they don't use it as a photo opportunity, they just do it, and pay it forward.

    Be kind out there folks x

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  • 13 April, Saturday, 2019

      27 April 2019
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    Alivia has had another temperature, so its another night in hospital

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  • 12 April 2019

      27 April 2019
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    Alivia went to theatre for her dressing change today.

    Her hair is getting noticeably thinner and she says it's often itchy.

    She still has such a beautiful cheeky laugh!!

    Be kind to each other

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  • 11 April 2019

      27 April 2019
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    Alivia head managed to get her white blood count from 0.2, right up to 4.4!!!

    Happy days!!!!!

    Current bead count :133

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  • Wednesday10 April 2019

      27 April 2019
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    Alivia's arm is leaking again, they're going to try new medicines to stop the oozing. Today our heart goes out to Mummy Rebecca. As she was brushing Alivia's hair, more and more is coming out. Makes me a bit teary just writing this. Big shout out to Alivia's great Nana who is able to visit!!

    Be kind to each other x

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  • 7th April, Sunday

      12 April 2019

    This morning Wee Alivia had a leak from her arm, Mummy and Alivia didn't have an appointment till 10:30, so they had a turn redressing the bandage. As a Mama to accident prone children, I can whack a plaster on my kids, but I think we can all appreciate this is next level. Well done Rebecca!!!

    Alivia had more bloods taken today, another strong dose of antibiotics, then needed a blood transfusion to get those pesky red blood cells up.

    Hope you're enjoying the end of your weekend.

    Be kind to each other

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  • Saturday 6th April

      12 April 2019

    Today was a bit rough for our Alivia, she started her day with having bloods taken, then an adult size dose of antibiotics. With such a huge chance of infection, no one is talking the risk. It's knocked her around tho, and she's shattered and not hungry. She really wants to rest today.

    Hope you are all resting with your families this weekend.

    Be kind to each other

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  • 5th April, 2019

      7 April 2019
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    Alivia was first on the surgery list, 7:45am and was back on the ward by lunch time, and she was famished!!

    2pm was another Chemo, luckily this one wasn't likely to make her throw up. However this one can contribute to hair loss, especially as she had to have it every eight days.

    The family is together at Ronald MaDonald House for the night, but Alivia's white blood cell count is down, so chance of infection is high. So she has pills for that, with the pills for her arm that bled the other night, and other pills, antibiotics.

    Alivia and Mummy Rebecca have been in Chch for four weeks, one day.

    Did you know she doesn't complain.

    Be kind to each other

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  • 3rd April, 2019

      7 April 2019
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    Under Alivia's arm, where the biopsy was taken, became swollen. Just before ten pm, it popped. Loads of blood, Mummy Rebecca rang ahead and Dad Russ, ran into the hospital, carrying his little girl.

    The great team at the hospital patched her up, and everyone stayed at the hospital, but it's hard to sleep in times like this.

    She needs another surgery to find out what's going on.

    While all this is going on, Alivia has been practising her letters, in a little book. She's determined to get back to her new school as quickly as possible. She didn't officially start, but with so many 'pre school visits', she already knows that she loves school.

    I remember loving school.

    Be kind to each other

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    • 02/06/2019 by Sarah Powell

      My daughter Charlotte has afh. We are in northland. She has it in her brain.

      Maybe contact me on fb?

    • 03/06/2019 by Gemma Franken

      Hi Sarah, there are a few 'Sarah Powell' on fb. Could you please message me https://www.facebook.com/gemma.franken

      and I'll get you guys in touch with each other. :)

  • 2nd April, 2019

      7 April 2019
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    Daddy and George have come to be with Mummy and Alivia for a few days. When life gets tough, ya need your Whanau around you, that's for sure.

    This photo melts my heart.

    Be kind to each other

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  • Sunday 31st March, 2019

      2 April 2019
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    I love this photo, busy, eating potatoe chips, being a bit of a goober, busy with stickers. Anyone would think Madame Alivia here, is a chilled out five year old in her bed........

    She is so much more!!!

    Alivia is having a blood transfusion, her red blood count is low.

    She's taking it all in her stride.

    Continued 'good thoughts to the universe' is hugely appreciated.

    Be kind to each other

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  • Saturday 30th March

      2 April 2019
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    Alivia and mummy have 'broken outta hospital'...... They're at the Ronald McDonald House.

    Alivia has her bead necklace of Courage.

    Don't know about you guys, but seeing that many beads on our young friend, makes my eyes well up.

    As always, thank you for your support,

    Be kind to each other

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  • 29th March, 2019

      2 April 2019
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    You would all be so proud of Alivia. She has faced her first chemo like a champion. It made her a bit sick and she said that she could taste it, which of course would make anyone throw up. Mummy was on hand to make things all better!

    Each 'round' of chemo takes 21 days...... Alivia needs two rounds.

    It's very tiring and Alivia has to be connected to lines, and not leave bed. Mummy Rebecca says bed time routines are all over the show, but Alivia still tries to be her sweet normal self.

    Thank you all for your well wishing and support.

    Be kind to each other

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  • Wednesday 27th March

      27 March 2019
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    Hey there beautiful people.

    This week has already been huge, and it's only Wednesday?!!!

    On Monday just gone, mummy Rebecca and Alivia had early morning hospital appointments to check Alivia's kidney and liver. She had to have blood tests every two hours. 9am, 11am, 1pm and 3pm. In the middle of that, a meeting with a fertility specialist.

    Alivia is going to have key hole surgery this week to have ovarian tissue taken and it will be frozen. A side effect of chemo is fertility problems.

    It seems mind boggling to talk about it, as Alivia is five.

    Everyone is so thankful for the talented specialists who, unfortunately deal with this often!

    Thank you for your support, txts, emails, Facebook messages, love, light and kind thoughts to the universe.

    Be kind to each other x

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