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Bonnie has leukaemia

  • 8th May 2017 - where does the time go??!!

      8 May 2017

    A big Hello to you all, although it sounds tacky I have to say it - many a time I have been meaning to do an up date and rudely I somehow get too busy or forget, I wish to express my apologies as we are most grateful that Bonnie has wonderful people like yourselves on her page supporting her and us as a family. xox

    Well Miss Bonnie has had plenty of ups and downs. The months leading up to Christmas were plagued with different infections - if it wasn't an ear, it was the mouth/throat, if it wasn't the mouth/throat it was her chest. We had a lovely Christmas family (especially with Bonnie and Larnies grown up cousins and their partners coming home from Ozie and Auckland - the kids had a ball) but as parents, we had a slight grey cloud over us as we knew Bonnie wasn't 100% despite what the doctors were saying. On the 27th Dec Bonnie and ended up in isolation in Dunedin hospital.....and yes we spent New Year there too!! There is certainly one thing about this cancer journey and that is - you never know where you are going to be or when!! We spent 8 days there, Bonnie had 3 different viral infections and then of course came the mouth ulcers etc etc. Our stays at any hospitals certainly are not gloomy all the time, as usual the nurses, doctors and staff were absolutely lovely and FUN!!!

    On New Years Eve we had the entire childrens wards to ourselves - Bonnie had lots of fun being wheeled around on her portable I.V pump stand up and down the ward around the corridors etc

    She is enjoying school and attending 70% of the time, however she would rather have 70% at home so she can be with her Peter - a mini loop pet, brown rabbit which was given to her by a very special teenager as a reward for all her pill taking etc. So Larnie didn't feel left out and so Peter didn't get lonely, I bought the litter mate, Henry and he is pure white. - I've always said - never have a pest as pet.......but my goodness these guys are very cute!!

    I finally tied Bonnies hair up for school last week and for the first time I didn't have to use 101 hair pins, bands and just short of using glue, the cute little pig tails stayed in!! It has grown back the same beautiful mousey brown with a soft wave as it use to be.

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  • Me Again.......

      6 September 2016

    I hadn't pressed the "Publish" button on the update on Bonnie!! - I have now thought!!

    I will now attempt to get photos and post them here ..... wish me luck, I am such a dinosuar !!!

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  • !!!SORRY!!!

      6 September 2016

    So sorry everyone, I updated Bonnies page several weeks ago and have just realised that it hasn't been saved, please accept my humble opologies.

    I'm going to save this now, as a test run, and then I'll be back with an update!

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  • Hello Everyone!!

      23 August 2016

    Firstly please accept my apologies, just don't know where the time goes, you have all been in our thoughts but that is no excuse for not up-dating this page more often.

    Our wee trooper Bonnie has completed one year of her two and a half years of treatment - YAY!!!

    She is so amazing at taking her daily oral meds, of which the numbers have slightly increased due to her body index increase. It is still not a very nice routine of waking her each night to get her to have her oral chemo, we thought this would improve - but NO!

    During June and July Bonnie was plagued with niggling illnesses, nothing too major as we always seek doctors reviews straight away. However, over 8 weeks she was on antibiotics for 3 of them. An ear infection, got that cleared up, then a chest infection - more antibiotics, got that cleared up, then a throat infection, a week latter....the big bomb - her bloods were too supressed so treatment was suspended for 3 days.

    She is enjoying going to school and is attending 60% of the time. The treatment has made her beautiful brain "mushy" and retaining information is difficult, also basic word indentification which she did have pre treatment are now challenging (the funny saying of "I only went to school to eat my lunch" is reasonably factual in Bonnies case - for the intrm!!).

    Older sister Larnie has been a fantastic support sibling although there have been times of jealously and frustration. However, we try to make reason and get on as best/normal as we can. It has helped that she is an avid violinist and has for the first time ever, played a sport - hockey for winter.

    We do not have any family members close by, the closest are two and a half hours away and in their 80's!! Others have work commitments. This leads to me quite often needing to refer to the calendar to see what day of the week it is and what is suppose to be happening! Many times I have delivered Larnie to school in Oamaru, driven to Dunedin for Bonnies I.V chemo, collected Larnie after school to play hockey and get home after 6pm to then shower and feed and read and nest the children for the night - and it is all worth it - that's for sure!

    With all the wonderful and generous donations, we finally got our kitchen in!!!!!!, and we have now got the finer details finished - WOW WHAT A DIFFERENCE!!! So clean and tidy with cupboard doors and draws which close themselves. Mitre 10 Oamaru were great to deal with. A friend made a wooden bench top from Australian Redwood which we had and I found a stainless steel sink bench top on good old Trademe! ### Photos to follow####

    To each and every one of you, a huge Thank you for your generosity and for supporting Bonnie. This journey has really proved to Hugh and me that no matter what the commodity of the gift, how big or small, it is truly humbling, and we thank god and our lucky stars that we live in New Zealand :)

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  • YAY! Delayed Intensification - done & dusted!!!

      31 December 2015

    D.I block of 57 days started with day 0 on 19 Oct with a finger prick blood test, Oamaru Hospital, poor wee Bonnie hates little sharp needle/knives going into the end of her tiny finger, through her crying tears she says it feels like they go into her bone, truth be known...they probably do :(. As we got through this block, she became more terrified of the thought, so to prevent this tromour as much as we can, we now travel to a base hospital, usually CHCH, to get her portacath accessed for bloods with chemo being given the next day (thank goodness she has always been count recovered enough for this plan to run accordingly!!!). However this means leaving home at 4am to be ready at C.H.O.C at 8am, which makes for a long two days, but this is life saving so you just get on and do it!

    20th Oct - Day 1 I.D - Bonnie received two lots of I.V chemo and theatre for spinal chemo.

    In this block she also had two x four intensive days of I.V chemos and hydration, a week on, week off, week on of steroids, I.V enzyme treatments, and 12 days of oral chemo - which is to be taken in the evenings, no food 2hrs before or 1 hr after - that's handy! not! especially when you have dinner and wait to give the med and then Bonnie wants to eat again!

    Things were going well until Day 4, when Bonnie had an anaphylactic reaction to an enzyme drug. The CHOC nurses are so well trained and with protocols in place meant Doctors and consultants on the ward were at her bed side within minutes. It was certainly a quick adrenaline rush for everyone. Unfortunately this meant instead of having 1 x 2hr infusion, the alternate drug was 6 x 1hr infusions over two weeks = more travelling = more vomiting in the car :(

    Over that hurdle & finally with the required amount of enzymes on board it was back to plain sailing - until Day 40 (during this time, the little bristles of hair which had managed grown back all shed, little wee, short, shiny bits of memorabilia were left on pillow cases, the up-right of her car seat, over everyones clothing, to finally produce a every shiney, beautifully shaped head.

    Day 40 - Bonnie & Mum arrived home at 2pm for a much awaiting 14 days of no hospital visits (but still having oral chemo) by 9pm we were in A&E at Oamaru Hospital with the febrile neutropenic kit, with bonnie having a 39.5 temp. This meant Dad had to find care for Larnie & being a Saturday night and our closest family being 2.5hrs away, this was not an easy feat. Bonnie had an I.V line put in her arm (this was not and easy task - a) a very scared and upset 5yr old and b) her low blood pressure meant it difficult to access a vein. Antibiotics administrated and Bonnie and I were ambulanced to Dunedin Hospital, 2am Bonnies port was accessed for drug and hydration and blood transfusions. She spent 5 days in isolation and 9 days all up. We got home on a Monday afternoon & back to CHOC CHCH on the Thursday for blood tests and reviews etc, etc,

    I'm very intrigued with some of the drug names! ... Dexamethasone, Vincristine, Doxorubicin, Methotrexate, Cyclophosphamide, Cytarabine, Pegaspargase, Erwinia to name a few, but these are the main ones.

    We have finally made it to Interim Maintenance 2 on 14th Dec being Day 0!!! YAY. This is another 57 day block.

    Day 1 Bonnie again received 2 lots of I.V chemo and Spinal chemo. She had chemo on Christmas Eve Day and we were very fortunate to get home that night to have Christmas Day together as a family.

    We hope you all had a wonderful Christmas, having a fun and safe time and most importantly, making happy memories.

    We Thank you all for you support, not only your generous financial support but also for your emotional support and having us in your thoughts.

    The New Year brings more treatment for and returning to school for Bonnie. Her treatment will finish in September 2017 - yes! - 20 months away. She will start Maintenance in March 2016, which means oral chemo every day, 7 days a week for 18 months along with all the other daily oral meds, monthly I.V chemos and 3 monthly Spinal chemos.

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  • June/July 2015

      18 October 2015
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    Getting over another spiked temperature - infection = unknown

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  • June/July 2015

      18 October 2015
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    Poor we girl, I.V sights prep'ed and ready for the Doctor.

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  • Sept 2015

      18 October 2015
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    Not so happy. In A&E Oamaru Hospital with spiked temp.:(

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  • Delayed Intensification is to start on Tuesday 20 Oct 2015

      18 October 2015

    Bonnie has had a 2 week break since completing the last 8 week block treatment (Interim Maintenance). The next block is the same length but a lot harsher on her body.

    In the first 29 days she will receive chemo twice a week with reviews every other day. There are more spinal chemo's, I.V and oral steroids. After the 29th day, depending on her blood count recovery, her specialised team in C.H.O.C, CHCH will consider options for the next half of the block (if her body is able to stay on protocol levels of chemo's etc)

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  • Bonnie giving Dad a haircut

      11 October 2015
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    Bonnie gives her Dad a haircut to match hers.

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  • The Kitchen

      11 October 2015
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    This is the kitchen at Bonnies house that some of the money raised will go towards putting in a more suitable kitset kitchen for storing Bonnie's medication.

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  • October 2015

      11 October 2015
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    Bonnie totally exhausted on the drive home after a trip down to Dunedin for chemo.

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  • Bonnie has completed another 'Block' of treatment!!

      9 October 2015

    Bonnie completed Interim Maintenance on Tuesday 6 Oct 2015. She had two types of chemo, 5 times over an 8 week period in Dunedin Hospital as well another Lumber Puncture - chemo into the spine. The Vinchristine chemo stayed at the same rate but the Methotrexate was escalating, reaching the final huge dose of 230mg.

    To date she has had 23 lots of I.V chemo while taking 29 days of oral steroids followed by 1 month of oral chemo - that is one of the biggest challengers as a caregiver - getting the oral daily meds in!!! she is always taking oral meds of one type or another twice a day and some do taste garstly even to an adult!

    Her bead count is around 250 and each and everyone of them is well earnt!!

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  • August

      26 August 2015
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    Bonnie is now back in North Otago. Yesterday Bonnie and her mum, Lil travelled down to Dunedin for bloods and chemo today.

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