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Support for Elliot

  • Happy 3rd birthday!

      5 February 2019
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    A lot has changed for our little champion in the last few months! Her first MRI scan since going on her new medication regime provided mixed results, so they’ve increased the dose of one of her drugs. Initially, this caused some minor side effects – an itchy skin rash – but after a few weeks, this cleared up and since then there’ve been some really positive changes.

    She’s been on the verge of walking for a while now – taking a few steps between the couch and the coffee table, or across a hallway – but on Christmas Eve she suddenly started going for it, and walking became her primary mode of transport. She’s still a bit unsteady, and is having the usual falls and bumps you’d associate with learning to walk, but is getting better and better every day.

    There was a bit of a setback early in the new year, however, when one of those falls led to what turned out to be a fracture in her foot. She went from walking everywhere back to needing to be carried (a challenge, now she weighs around 37kg), and has only just gotten properly back on her feet in the last week.

    Her language has also blossomed. She chats away in complete sentences, and has even started making up her own words to some popular songs. She loves music (even if sometimes her tastes are both very specific and slightly questionable) and is always up for a bit of a singalong – especially if the Backstreet Boys are playing...

    She’s also recently added a new medication to her pharmaceutical cocktail – metformin, which it’s hoped will help with her hypothalamic obesity. She’s now just over 3 years old, but weighs as much as the average 10 year old. Metformin isn’t expected to be a miracle cure, but might help slow her rate of growth and control her appetite.

    Probably one of the most exciting things is that she’s about to start at an early childhood education centre. We’ve found a really great place for her to go, and we know it’s going to do wonders for her to be able to do more socialising with children her own age.

    Elliot’s next MRI is due in March – this will be the longest she’s gone without a scan since she was born. There’ve been positive external signs so far, but that’ll be the real test. Keep your fingers and toes crossed.

    PS. Apologies to anyone who tried to donate or share this page in the last few days - in all the excitement over Elliott's birthday, Jess completely missed the impending closing date - time flies!

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  • Growing up

      23 July 2018
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    It’s been over six months since our last update and there’s so much to share.

    Elliot is amazing, that’s a given. She’s been on dabrafenib (targeted gene therapy drug) oral chemo for one year. And six weeks ago she started a second drug (trametinib) to accompany this first one.

    Getting these drugs into her is hard work. They are both oral drugs and administered daily around a period of fasting (2 hours after food and one hour before) which is hard for any toddler.

    Thanks to the DHB and our oncology team for sourcing these drugs for her - they are not funded here in NZ but cancer kids get some exceptions and we are very grateful (if indeed they work their magic).

    In April she had an MRI scan that triggered these changes in drug regime. Although parts of Eugene (her tumour) are responding to treatment, other parts are not and the hope is that the new drug will get things under control and slow/stop growth.

    A drug side effect has resulted in her hair turning into this incredible mop of gorgeous tight ringlets making her look like a tiny Janet Frame. Also this improves her chances of being the cutest ‘little old lady’ as her Halloween costume (add string if pearls, blouse, cardi, spectacles and her tiny Zimmer frame). It’s going to be amazing.

    She’s still not quite walking unaided hence the walking frame and is taking various therapy classes weekly such as swimming, physiotherapy, and music.

    Her hypothalamic obesity is an ongoing burden for her too (thanks to Eugene’s placement in her brain) so she tires easily when physically exerted. Try bring two and having to carry around the weight of an average nine year old. Exhausting.

    Couple that with a prominent right sided weakness (not using her right hand and arm for much more than bashing us). Actually this could be a strength.

    But there are so many things that she does every day that give us such hope and fill us with glee: she’s very cheeky and playful, and loves music with such a fierceness it’s infectious. Her language is developing and words keep coming. And she thinks she’s pretty humorous - it’s not unusual to encounter her cracking a joke to herself, accompanied by a good dose of self reviewing, “funny, funny, funny.”

    She loves her sister and her sister loves her so fiercely too. She wants to “hold it” when she encounters smaller children and babies. When she reaches for you and says “cuddle” or “come here” it’s pretty much impossible to resist. She’s started saying “always” which is my response to any cuddle requests.

    Although now daddy is her favourite - as of six weeks go mama has returned to full time work and Elliot is lucky enough to have daddy full time at home with her. And she gets a weekly visit and play with her favourites Jim and Bobbin.

    She’s managed to avoid another brain biopsy for now - another hole in her head was not something we were looking forward too. And in just under two months she will have another MRI. Fingers crossed and medical science and all that.

    Thank you to everyone who has supported Elliot and our wee whānau.

    Aroha nui.

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  • Onwards!

      12 January 2018
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    On 26 January 2018, Elliot will turn 2. In those 2 years, she’s so far had 7 MRIs and 3 surgeries –one for a brain biopsy, one to insert her first port-a-cath, and another to replace it – and 10 general anaesthetics.

    She’s undergone 12 months of treatment with vinblastine, which – although it did shrink part of her tumour, only slowed the growth of the other parts of it – mainly made her feel constantly nauseous and tired, and meant she had to take a number of other drugs to mitigate the side effects.

    More recently, however, things have been looking up. She’s on a different drug, dabrafenib, which targets a mutation present in her tumour – and her last two MRI scans suggest that it’s working. Her tumour is shrinking across the board, including in the areas of most concern – her optic pathways and optic chiasm, and her hypothalamus.

    Elliot is much happier on dabrafenib, and has more energy – and her immune system is less likely to be compromised. She’s just about walking, and has so many words (!) as well as a wicked sense of humour, and a real love of music.

    The last 2 scans however did show an "abnormal T2 signal" in some parts of her brain. Apparently this is most commonly associated with neurofibromatosis - but she shows no symptoms of this condition. They're going to do some genetic testing to try and get to the bottom of this, but there's nothing to be concerned about at present.

    For the moment, treatment continues as it has been for the last 6 months, with no change to her drug or her dosage. So basically - onwards!

    Our little girl continues to be happy, sparkly, and takes all this stuff in her stride, and we'll do our best to follow her example.

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  • Update on the last year

      10 July 2017
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    On 29 June 2017 – one year and two days since we found out about Elliot’s tumour – we got the results back from her latest MRI. It’s fair to say that it wasn’t the result we were hoping for.

    There hasn’t been an alarming amount of growth since her previous scan, but measured cumulatively since her diagnosis, the area of her tumour that’s on her optic nerves and optic chiasm (that’s the point in a brain where the optic pathways cross over) has grown by about 20%. While they think that her current treatment has slowed this growth, it’s now time to look at a different treatment, in order to be proactive about protecting her vision.

    The new treatment they’re investigating for her is called a BRAF inhibitor. It targets a genetic mutation which her tumour has tested positive for. The use of it for childhood brain tumours is pretty new, but studies overseas have shown some very promising results.

    We’re waiting now to find out more details – basically when, where and how the drug will be administered. We do know that it’s taken orally, typically twice a day.

    It’s tempting to feel like this is a setback, but the positive news is that there is a plan, and there’s reason to be hopeful about this next step.

    Thank you for your support on this journey so far. It means so much to all of us. We’ll continue to keep you updated as things progress. - Jarrod and Caroline

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  • Happy 1st Birthday Elliot!

      27 January 2017
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    Elliot is now one year old, and after starting treatment at the Children’s Hematology & Oncology Centre (CHOC) in Christchurch, is now receiving chemotherapy as an outpatient at Wellington Hospital.

    The good news is that her treatment - a weekly dose of a drug called Vinblastine - appears to be working! Elliot’s latest MRI shows that her tumour hasn’t appreciably grown, so at this stage her current course of chemotherapy will continue as planned for a total of 52 - 72 weeks. She’ll have MRIs every 3 months to monitor her progression (the next one is due in late February) and all going well should complete this round of treatment some time during the second half of 2017.

    This is unlikely to mean a cure, however - the aim is to stop Eugene’s growth, and hopefully shrink it. At this stage, it’s expected that she may need subsequent courses of treatment throughout her childhood and teenage years. This might include more chemotherapy, radiotherapy when she’s old enough, or possibly some genetically targeted treatment. After that, it’s possible that once she reaches adulthood, the tumour will simply remain stable.

    By 26 January 2017 (the day she turned one), she has had a total of 20 chemotherapy treatments and collected over 385 Beads of Courage.

    There’s a long road ahead for Elliot - but the early signs are promising, and your help and support has meant so much to her and her family during what has been a thoroughly challenging time for them all.

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