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Charlies Challenge : fighting rare grade 4 brain cancer - Updates - Givealittle

  • June 2019     2 June 2019
    Posted by: Sarah Powell
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    I had hoped to say we would be celebrating our year anniversary since radation treatment.

    I had hoped to describe a feeling of jubilation and success.

    Instead I describe the fear of its return.

    The last scan 2 weeks ago had two marks identified. It is not known if this is the cancer returning and we won't know until August when a follow up MRI is completed.

    We know however that radiation isn't really possible unless it moves out of the brain which we don't want it to anyway.

    We know that surgery granted us 2 month before relapse prior to the radiation. We know that afh doesn't really respond to chemo.

    So we know our options are limited.

    We know that sitting here waiting between MRI 's is just wasting precious time with our girl.

    That sending her to full time school is wasting time. That we shouldn't live like that considering it's urgency.

    Statistics for brain cancer are shocking. Where breast cancer has prognosis of 80+%, brain cancer is 10%.for survival over 5 years.

    We are on years 2 leading to 3. She has had 2 relapses. 3 surgery's . So the prognosis isn't shit hot. There's only so many times we can fight this. Only so many times she can walk put of brain surgery well. She is only 6 years old.

    But regardless of all that she is still the bossy boots madam. She is still the loving affectionate little girl. She is still funny and awesome. But I wonder is our time running out.

    So to all you readers, feel free to share this. ... share it to your dr friends who can give me the golden solutions.share it to your rich friends so they can donate and let me take my girl wherever she wants. Share it to your peers so they can realise that kids are suffering and cancer happens. And we need to do something about it.

    Maybe this will make a difference somehow.

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  • New year, another MRI     9 January 2019
    Posted by: Sarah Powell
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    Sometimes it feels like you are always repeating yourself. Complaining about the fears of long term impacts or fixating on the disgraceful prognosis

    Again, I sit here counting down the days until the MRI,  knowing that our current future is reliant on that result.

    For the past 2 years we have lived in 3 monthly intervals.  Planning only the immediate future knowing that we cannot fortell anything more. Holidays, jobs, life on pause.

    It's tough.  As I've said many times before, you move on for a few weeks, live "normally" until so many weeks before the scan and then the anxiety kicks in and all you can think about is that. Translating her behaviours, reading research, contemplating the what ifs. Fearful of what lays before us. Fearful that so few get away unscathed. And that despite how well she presents today, we truelly do not know where we will end up. Brain cancer is not normally forgiving or empathetic. It fails to consider her age, or spirit or worthyness of life. And it just sucks.

    I suppose the pending scan is a grounding reminder that you should always be vigilant about your health and that cancer can be quiet but not cured. That life is short and we should try and be happy with all we have today because tomorrow is tomorrow. And we have no idea what tomorrow will bring and how quickly life changes, with or without a diagnosis like this.

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  • Remenising about her diagnosis.      28 October 2018
    Posted by: Sarah Powell
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    Every November is an anniversary for us where we began “the days of sickness”. And each year we get to it I am grateful that we are still here fighting this battle. Regardless it makes you reflect on the journey we have been on.

    Most people will tell you that they remember the moment the doctor told you, and we do . I recall it as if I watch it on a DVD , third person looking both at myself and my husband whilst knowing what was going through my mind

    Charlotte had her 4th birthday and on the day after she was sick, mild vomiting and headache and fever. We took her to the dr and they did her first bloods and told us that we should head to whg hospital for a diagnosis. He implied that some marker was a concern but we weren’t sure at that time , if it was simply a reaction to too many sweets or just a mild illness.

    I can’t fully recall the order of things but over the next 6 weeks, we completed an ecg, 2x daily bloods, lumber puncture, ultrasound, mri of the stomach, x-rays and so on and so forth.

    The more time we spent in the hospital the more anxious she became, with blood tests being extremely traumatic. Having to pin her down , with her crying and me crying , feeling like we had to do it and yet no no real diagnosis coming from it.

    We spent several weeks in and out of hospital me and her , as hubbie had to remain with the other 3 kids to keep some sense of normality. He would bring them in and we would speak in hushed tones about what was going on. I challenged doctors on their lack of knowledge checking it wasn’t cancer and it wasn’t in her brain. They told me it couldn’t be , she was presenting too well and oncologists in starship had reviewed the bloods and it wasn’t that. Instead they put alternative titles on it , that didn’t nearly match her symptoms suggesting that further symptoms would appear.

    In December 2016 we spent a further few days in hospital administering iv antibiotics testing another random theory that she just needed a decent dose to stop the twice daily fevers. She spent the night vomiting heavily , with me and her managing it in our room and finally me saying no more. That was a tough night seeing the trauma she was suffering , with little confirmation that this was working and what looked like her body rejecting what was supposed to help her.

    At this point , even though the fevers tired her out , we felt that we could live with that, we weren't getting any specific diagnosis and thought it was better then living in and out of hospital. It wasn’t something dreadful. So, we left. Waiting for further symptoms , waiting for the drs to miraculously find rhyme or reason for my daughters’ sudden onset off illness and to move on.

    We went home for xmas, and then on to my mums for a holiday . On the day we were leaving to come home, Charlie went to the toilet and suddenly let out this scream of pain, but she couldn’t explain where it was coming from. It lasted minutes. We gave her ibuprofen – pamol didn’t stop her pain or fevers and she was fine.

    We had a 6-hr drive home and we had now lost faith in our local hospital. We ummed and arrgh knowing of the long waits in A and E and managing the family of 6 in a waiting room. But her scream necessitated a stop somewhere just because of the tone of it.

    Late in the evening and at the end of December, we pulled into starship emergency dept. and then we waited. We saw various registers and by about 9pm we were starting to settle in for the night. My 3 elder children were fighting over the 1 bed and the cot to crash in. Dad was on the lazy boy, I was on the floor assuming it would be another sleepless night. Charlie fidgeted in between each bed with the lights glaring outside the door. Finally hours later, one dr made the call to precautionally do an mri of her brain and this was scheduled for the next day.

    After the mri , us and 3 kids were meandering about the hospital when we got calls on both mobiles. Drs never chased us that much before so this was the first sign that something might be amiss. The next sign was the number of drs – maybe 5 or 6 inviting us into a room. The third sign was a dr offering to look after the elder 3 kids outside.

    We came into the room with this wall of drs acting as a panel on the other sign. The poor guy who had only just met us that morning led the conversation.I wonder if the other drs didn't have the guts to say it, to admit their failures and guilt. I don’t remember the words he said but I remember looking at my husband incredulously, looking at him thinking wtf. This isn’t real. Next the surgeon introduced himself and said that we would be in surgery tomo if not earlier. That he wished to get a good night’s sleep for this potential 8 hr surgery but if symptoms were bad, we would be doing an emergency surgery that night. He told us how close she was to death. He told us how big this one tumour was. We signed random paperwork approving the next step. And then we walked out.

    I had two female drs afterwards rubbing my back telling me it was alright to cry as if they knew me or had any understanding of what I was thinking. I never did the movie cry , the breakdown in the halls. I felt at the time that they were judging me because of my lack of reaction but I also felt so angry that now they cared, cared when maybe it was too late , when maybe they should have paid more attention in the weeks prior. I didn't need a hug from a stranger nor did I need their pity. I needed them to do their job and have answers. I think in reality at this point the shock was there and this result had not sunk in. It felt like someone else's life, some movie I was watching, not my new reality.


    Even though that moment is scarred in my memory , it was only one-part of this journey. The 6 weeks prior with the various procedures and the emotion and trauma that was induced because of Charlies reactions required me to be the strongest I’ve ever been. Staying away from your family, managing her in the concrete environment and having to keep it together was tough tough tough. Then there was the surgery after the diagnosis, managing 3 rowdy country kids in the city where our priority focus had just endured life saving surgery and is bandaged and bruised with cords and machines all over her. Doingthis on bugger all sleep and your own stress levels and just getting through each day and wondering how she is. Next is the cancer diagnosis and what that looks like, the manic researching, the fear of what will occur and the quick onset of intervention talks. Then there is the misdiagnosis , again the confusion about what this tumour is and was and again not being able to trust those in authority whose job is and was to keep my kid alive.

    From the day she got sick , there have been new hurdles, new challenges and learning all the way.

    We are now in a place that has suffered surgery, relapse, radiation, intervention after intervention and ironically it is all normal now. We have a handle on what to expect and what this does but are thankful that we have not experienced all of what cancer has to offer nor would we want to.

    But as we get to these anniversaries , that no one wishes to celebrate, it is a terrifying look back at what we’ve accomplished and endured in what some would say is the toughest of times.

    But when I look back at the dedicated photo album, I see smiles, and joy to be found despite the occasion and despite the environs. I am grateful that we have had this time together. We have still had laughter and joy . we still live on and my charlie is here to celebrate her up and coming 6th birthday, two years on.

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  • July 2018     20 July 2018
    Posted by: Sarah Powell
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    Hi "give a lotters".

    Sorry for the delayed update. I've started maintaining the Facebook page as it's slightly easier to manage. But here is a quick update for those not linked up that way.

    We completed radiation about a month ago. We are now home as a family again and it's as if, it didn't happen. Charlotte seems reasonably well, she does have more mood swings and has lost some weight, she does struggle sometimes with communication but despite this she is still the same girl, the same easy to love stroppy madam whose super funny and caring. We are having to learn how to manage her behavioural stuff and this can cause tension in our home but again compared with others with brain tumours and the impact surgery and treatment can have, we are lucky.

    We've completed our first MRI scan post treatment and from this initial assessment, it appears we may have slowed or stopped growth.

    There is still tumours present and significant swelling that could be hiding cancer but the speed it was going at, has stopped. The relief of this scan is huge. From my eyes, I was again grieving the loss of my daughter and now I can again live, at least for the next 3 months when the next scan will be.

    We are still being proactive with herbals and consider that new herbals given to her have contributed to her current status. She is currently on 6 pills a day and vitamin c. I have faith that an optimum healthy diet with supplements is important not only in fighting her cancer but keeping her strength up to fight further infections that could make her deteriorate.

    We've had some time away and done some fun stuff over the holidays but am looking forward to school. We also have family coming to see us soon,so no rest for the wicked just yet.

    Thanks guys for the continued donations. We've been very lucky with recent support in our local community in northland but this page lives on and donations trickle in which is lovely to see, especially when they come with heart felt messages. It's nice to feel supported on this long journey.

    As we've said before, when we were first diagnosed we felt we would be lucky to have a year with her and thankfully we are now 18 months in. The statistics as we know are crap for brain tumours so we don't anticipate her being with us forever but what we do try to do is enjoy the time we have and prolong it as long as we can , at no cost to her quality of life.

    My daughter is an awesome girl. She'd act shy if you met her, but if you knew her, she's hard not to love.

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  • May 2018     31 May 2018
    Posted by: Sarah Powell
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    We have lived now for 6 weeks at Ronald McDonald house in Auckland enabling charlotte to complete daily radiation therapy under general anaesthetic.

    We have been lucky so far with no signs of serious infection, no complications and minimal fatigue and hiccups. It was a rocky start with concerns and issues but thankfully things settled and a stable routine made the time go well.

    We have one more week left here and plan to celebrate with a trip to waiwera hot pools once charlotte's iv line is out.

    Post radiation the future remains unclear. We re-start herbals that had to be halted for treatment and hope this is enough to put the cancer on the back foot. We wait for the MRI in another month and hope the results are positive. There is concern between the time of the last MRI and this one, as there was significant growth within 2 months and yet we would not have had a scan for at least 3 months in this occasion. Charlotte fails to disclose symptoms and therefore without this insight, it is hard to know how her cancer is developing.

    Because we know that our treatment options are reducing, and time maybe short, we continue to enjoy what we have. Even during this time in the big city we have been active in our choices, biking, ice skating, scooting, cinema going, beach playing, and enjoying what has luckily been fine weather.

    There is so much we do not know at this moment, all we can do is enjoy now with our funny and strong and brilliant little girl.

    P.s for more regular updates, I post things on Facebook under charlies challenge new zealand.

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  • Radiation. April 2018     1 May 2018
    Posted by: Sarah Powell
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    Just a brief update for you guys that aren't aware, we started radiation last Thursday and are now living in Auckland whilst the big kids will be home 3 hours drive away.

    We will be staying at Ronald mcdonald house luckily up the road from starship, where charlotte will be going under general anaesthetic every day for the next 6 weeks so that radiation treatment can be given to her cerebellum.

    Even though we are only day 4 it is evident it's going to be a long journey ahead.....

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  • 12 April . Pre radiation.     12 April 2018
    Posted by: Sarah Powell
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    Charlotte is home and well by all appearances.

    She had surgery on the Thursday . We had our own room by Friday. Went bike riding on Saturday . Moved in to Ron Mc Donald house on Sunday. Biked some more on monday. And released home on Tuesday.

    Thankfully as we have been here before, we know how important it is to get the Dr to sign off decisions in the 5 mins you have them.

    So since then we have been integrating ourselves back at home. Charlotte is back at school a few mornings and then we have quiet time in the afternoon. She is still on some herbals(5 pills a day ) and we have started looking at another few option too, but we have come off 2 alternative meds that we were using just in case they contributed to the cancer growth. We will have to not use vit c during radiation and now we also know to stop tumeric prior to surgery too... (if only more Dr's were open to alternative stuff, it wouldn't be so much trial and error).

    Radiation is set for the 26th April where she will go under general anaesthetic every day via a line in her arm for 6 weeks.

    We plan to both be with her for the first week and then me and dad will play tag where possible to ensure our older kids have a sense of normality.

    At the moment we at home are coping . There's anxiety about the future but obviously we can't control that. We have school holidays for the next two weeks to plan to do sme fun stuff hopefully.

    The pics are of miss Powells big day yesterday . Her first tooth out. She often refuses pictures now so I made the most of her willingness and cuteness.

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  • Surgery number 3. March 2018     29 March 2018
    Posted by: Sarah Powell
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    Hi guys.

    I'm sitting in the ward with Charlie finally asleep after a 4hour afternoon surgery today.

    She woke grizzly and slightly incoherent but has stabilized thankfully. So far we have been extremely lucky with her recovery in this and previous surgeries. You hear and see things here and thank god for how she is to date.

    Surgeon however was not presenting his normal confident self this time. He acknowledged he got the largest vascular tumour and a subsequent one but implied that he was not hopeful that he got it all.

    He questioned again if it was a different diagnosis due to its aggressive appearance. He seemed to imply that this surgery was a temporary act and he now had more faith in the radiation, but even this seemed based on hope and crossed fingers instead of evidence.

    It's definately a scarey place we are now in. With it looking like a slippery slope of cancer and it's crap future where treatments are either unavailable or pointless.

    We estimate we will be locked in hospital now for the next 2 months with radiation to commenced soon after surgery recovery....

    We then hope to have the ultimate and potential final tiki with the family around nz. The goal obviously is to enjoy her whilst we can,whilst she's the girl we know and love and to prepare us for what might be the inevitable beginning of the end.

    Photo is of the day of surgery before we went in.

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  • March 22nd 2018 .....what choice do we have ?     22 March 2018
    Posted by: Sarah Powell
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    Good evening all,

    I sit here writing this during 5 minutes of peace before the weeks of madness begins.

    The MRI results are in and we have achieved nothing - to the contrary.

    Charlotte's tumors have grown significantly. One in particular has grown apparently 45x bigger. The oncologist now is willing to suggest this is growing like a grade 4 cancer.

    Our herbal additions have either been insufficient in dose or insufficient is substance. We are lost on whether to continue with clean,green eating and supplements, now fearful that we could somehow be contributing to the cancers aggressiveness. It is possible that this way of life however is keeping her healthy in the ironic state of cancer as Charlotte continues to appear well and energetic except for a handful of mood swings.

    So going forward , Drs want surgery on Thursday ( the day before Good Friday) and Radiation to occur within 10 days of that.

    As the title suggests, what choice do we have now?...i had previously wanted some clarity to help me confirm our decision for radiation , but obviously was not careful what i wished for. Now we have no choice but to follow and hope mainstream treatment will work .

    It all begins on Thursday. Wish us luck.

    Picture is of miss charlie just 3 years ago...looks like a different girl...

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  • 17 March 2018 - 15 months on this cancer journey     17 March 2018
    Posted by: Sarah Powell
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    To the doctor Charlotte is just another patient, another check to sign off that day, regardless of their 5 minutes of interactions with her. And even though some Drs and nurses are good and supportive and straight there seems also to be many doctors that you feel are not transparent and not open to questions or active inclusion in the decision making of your child. Ones which you feel want to "prescribe" the answers and you are expected to accept them as gospel. The problem is, its hard to trust them after weeks of them forcing your daughter to endure meaningless tests and pointless medicines during diagnosis.

    I think our journey of diagnosis was crap and this influences us heavily about our decisions and belief in the medical system . Apparently you have to trust that when they interpret the MRI that they will know what to do next, that they have made time to review it properly and professionally and unlike our last app, made sure that its the most recent one.

    You have to trust that they are not following the typical radiation path simply because they should and thats 'whats done" but because they believe it will actually work and make difference.

    So far , any talks about radiation , have resulted in conversations that imply they have no other options nor have they researched what else would happen should Radiation fail. Its as if all eggs are in that basket and then if they break they will scurry about for options then, once the cancer is really pissed off. The doctors seem to endure our herbal stuff but dont even ask what - when or if we are using , failing to grasp that they might influence recovery in a positive or negative way. They acknowledge their medicine chain only, potentially ignorant of things out side of mainstream.Which is frustrating , why did Drs change from the holistic way like they did 50 years ago....

    And so because you can't believe them, cant trust them, have only one patient to care for, you feel the weight on your shoulders to make the call .

    Have we done enough alternative medications? Should we have tried A, B or C? Is radiation the right time now when you only get one shot? Should we wait til its larger ? Or will it spread before we get there and we've waited too long? Will surgery be fully off the table and we will get the terminal diagnosis?

    Should we have done more, different, better?.

    And on Monday we find out. Are there still 3 tumours in my daughters head. Are they still needing action? How sick is my girl and what are we going to do about it?

    This time the MRI is highly weighted. We are all going as a family partially due to childcare issues but also because we want both of us parents to hear what they have to say. We are anxious to say the least and having the whole whanau there is not always a good or easy thing.

    Charlie has been sick the last few weeks. We hope its an unshakeable virus but its hard to guage. Regardless of that we have also done a few fun things recently in anticipation of weeks of daily radiation , assuming we dont know what kind of girl will come out of treatment. She has been attending school part time and looks like shes enjoying this , which is nice to have some normality. Attached are a few of the fun pics.

    One of the things we are looking at (should this MRI be crap) is medicinal marijuana. Leglilslation changed recently over here where a GP can prsecribe this based on pain and nausea and dosent have to go up the chain to the ministry of health so its less hassle. There is some questions/ antedotal evidence of it impacting tumours on other levels but no concrete eveidence yet. Should we go down this track , an intial consultation is 200 bucks , and then the medicinie itself is 300 bucks for 25ml of oil which you issue on a dropper. It is estimated that you need this at least every month. Obviously some people do this the black market way simply due to the financial obligations , but the concern then is acuracy of dose, safety and legaility.

    Any questions feel free to ask....Hope this catch's you guys up.Sorry once again for the topic jumping , i was never that good at essay writing - i always let the "stream of consciousness" flow!!!!

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  • 23rd February.     23 February 2018
    Posted by: Sarah Powell
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    Hi guys.

    Just got home a few days ago from a tiki down to Napier and Hastings and happy to be home.

    Charlotte may be suffering from pain as she was often moody and struggling particularly in the afternoons. The problem is that she doesn't disclose this though so it's hard to tell what's poor parenting or behavioural issues.

    Whilst we were away we had some correspondence from doctors.

    I spoke to a german doctor who said he was willing to treat her but it would be big costs, contact from nz doctors confirmed they are still forthcoming with radiation and I have an appointment at the weekend with a healer to see what he can do. Keeping all options open.

    Our MRI is booked for 2 weeks away and this will show up any growth and there is a follow up appointment with radiation a few days later which im guessing will be for planning.

    I am hoping that the results will be better obviously but I'm also thinking that I can feel them on the outside of her head which is new and concerning.

    I have also updated the Facebook page too,I'm not sure if it's working right but I can't do anymore then this...feel free if anyone is savvy In that area to tell me if they can see it....Charlies challenge nz

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  • 11 February 2018     11 February 2018
    Posted by: Sarah Powell
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    Hi guys,

    We've had a couple of big ticket donations in the past week that I wanted to thank you for.

    I know that by giving to my little girl,you are maybe missing out on your holiday,your xmas present, your child's birthday party or the like....and I appreciate that whoever you are, you are helping me with my girl, my love.

    This photo is from this weekend. We attend a local show that we go to every year. This day however it tipped down and waiting for the craft awards that my kids had particpated on was long and slow!! As you will see however fun was had by miss charlie ,proving that with cancer we can keep living?!

    Since our last reoccurrence and recent post, we've seen radiation and our "alternative" dr. Radiation suggested surgery was still possible and may be a better option considering that radiation you only want to do once really. Alternative Dr failed to give us any further new info and so it's as if we are left rudderless again, hoping that my research will guide us....

    Since those appointments ,we have been yet to hear from our oncologist who makes the call and who again is seeking further opinion on the diagnosis , as according to pathology from the second occurrence, it may look like a PNET tumour....

    It means therefore that we are still not certain about what next in regards to treatment.

    Charlotte on recent weeks though looks ok....there have been nights where she sleeps poorly, speaks of pain and isn't herself and you wonder if this is the beginning of the end, but thankfully this is so far, intermittent.

    I finish work tomo myself. After 6 months of no cancer last year I thought it was time to return to the work force. Within 3 weeks , she had the second reoccurrence ( surgery done in nov 17) and a few weeks back, the third reoccurrence.

    The second one I worked through, thinking that again cancer would be a temporary visitor but now with the third, it's as if he's moved in and we can't shake him....

    Quitting work is on one hand great, enjoy the end of summer,enjoy some charlie time, sleep in....but on the other it gives you so much time stress and get wrapped up in this.

    Sorry if this one's a long one, I'm told I should be short and you can see , I'm not too great at that!! Hope however this catches you guys up. I have also created a Facebook page now too...wondering where to put these update!! I think it comes under charlies challenge nz....

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  • 24 january. Another cancer?     24 January 2018
    Posted by: Sarah Powell
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    Keeping it brief.

    MRI was yesterday. (Our first since surgery in November 2017).

    Appears that there is either 1 or 2 small tumours in the same place (a local reoccurance).

    Genetic testing from Germany against approx 7000 brain tumours , matched nothing. In other words this is not a typical brain tumour.

    Follow up occured with America and they stick with AFH which had indeterminable malignancy (as in , they dont know how it can behave / what the prognosis is).

    Radiation is their preference.

    I have contacted both a germany clinic and an australian charity regarding rare cancers and options. Both would require serious fundraising .

    I have handed in my notice.

    There is nothing else to say.

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  • 11 january 2018     11 January 2018
    Posted by: Sarah Powell
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    Happy new year guys.

    Just a brief update.

    Xmas was good. Charlie had fun as did the big kids. Dad has been active at the swimming pool and beach so they are enjoying this lots.

    Full body MRI is booked for 23rd January and with some concerning behaviours , we are worried about his one. Hubby thinks it's just the initial one post surgery that freaks us out but I don't know.

    The stats say 2 out of 10 survive 5 years. We now know it can come back and we know it's acting aggressively. Coming into our second year with this, you can only wonder how many more clear MRI s we will get. But at least the Dr's are gracious enough to let us check for metastasize tumours.

    Still active with the alternative stuff and hoping this might help. My first batch of fermented tea is "cooking" on the kitchen side... ( wish us luck :)

    P.s Bubba is a cousin. 4 kids is enough for me....

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  • Dr Damian Wojcik - 21 December 2017     21 December 2017
    Posted by: Sarah Powell
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    New year will commence with Germany testing results due back in January along with a full body MRI as requested by ourselves.If the doctors have their way, radiation may be set for Feb even though they don't know how purposeful this would be because of its rarity.

    Because it feels like our options are reducing and we have limited trust in mainstream, we have looked at alternatives. Thankfully the sob story of a 5 year old girl wth cancer was enough to jump the queue to see a GP who specializes in "evidence based health services to address the needs of the whole person." using VIT C, Herbals etc, whose wait-list is through to next year.

    We met him on Tuesday and he seemed knowledgeable and straightforward. He supported some of the herbals we were already using and suggested a few more. He was frank, by stating its about quality of life versus longevity. He advised that he has concerns with radiation encouraging metastatic disease and highlighted the importance of dietary changes.

    It was good on one hand to discuss some things we could control, but on the other is it also about the confronting fact that i may watch my daughter die at this young age.

    On a happy note , my 10 year old daughter sang 2 solos at the Christmas carol concert , my 8 year old boy won a certificate of upholding the schools mantras in prize-giving and we attending a child cancer celebration where for the first time, i met other mums in similar predicaments, where we could swap war stories.

    I hope all of you readers, have a merry Christmas and ill keep this updated as we know more....

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  • Sunday 10th December. Oncologist comments.     10 December 2017
    Posted by: Sarah Powell
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    I spoke with the oncologist on Friday for an update.

    They say that its more aggressive then the last tumour, that its potentially growing in an area that will be inoperable and all the while not creating confidence in me about their knowledge of what this is or how to fight it.

     They would normally do a wider subsection during surgery with aggressive tumours but the location means this isn't really possible. So the doctors are now sending the samples to Germany for assessment, I think to find out how to do much / type etc.

    At home, we have commenced high doses of vit c, but are waiting on a local doctor after Xmas to start it intravenously if they will allow on a young child. I have contacted a nz based researcher about her studies and understanding of this and so am following her advice and my own readings.We are also reverting back to our healthier diet, unprocessed , unrefined etc and upping the turmeric and probiotics. Not sure what else to do.

    Charlie however is still full of beans. Counting down to santa, requesting a guinea pig and enjoying the spoiling. She is back at school part time and back in the water , now the stitches are healed. 

    Except for the scar on her head, you wouldn't know. 

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  • 24 Nov 2017     24 November 2017
    Posted by: Sarah Powell
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    Sometimes you fear that she is so awesome as a form of payment for not having her long . That god has somehow planned it that way.

    I was never the maternal mum until my last two kids. And Charlie enforced that. With reflux as a baby she and I breastfed long into the night and now our intimacy remains ...with nose rubs and hair strokes and face licks .its a different relationship then with my others and I have little say in the matter...

    Today we were free of hospital after further fluffing and time wasting. If life is worth living and life is short,then waiting for scripts and crap news is pointless . MRI happened yesterday. Results look good post op with full resection looking apparent.

    A inter disciplinary meeting also happened today . With oncologist pathologist surgery and nurses all in the mix.

    Last year the surgeon told us don't do radiation to your child for fear of consequences. He seemed confident in his ability ...

    This opinion has now changed to pro radiation....this is concerning as he seems to be a straight shooter.

    Furthermore the registrar talked about how again the diagnosis of afh does not really fit . That they thought this before but didn't want to say anything with little evidence either way.

    Now that they have more evidence they are willing to admit it. This however proves again how our cynisim and growing distrust is often justified because off the withholding of information from us.

    So again this leaves us in the rare category where she dosent fit into any category so they'll try and find the nearest one and hope it works. Evidently in this case, that didnt. AFH was supposed to be solved by surgery.

    So the plan going forward.

    Send pathology into other doctors, hoping that a year on suddenly there will have been an influx off this example of cancer.

    3 monthly MRI.

    Consider radiation.

    Consider alternative therapy.

    Consider jacking in job and living life in the now?

    In other news Charlie is coping well. Fighting her tiredness and intermittent pain but funnu and herself.( we were not suppsed to go anywhere so we put her in my hoody and snuck off the ward which she loved.)and tonight is our first night no I'm excited. Then tomo is the zoo and finally Xmas parade in the biggest city in nz,....nervous about crowds and taking a kid 5 days out of surgery , but blagged spot in sick kids bay so hopefully should be ok....if life is short and Drs don't know what to do having no clear pathway, then they will only be reactive not really proactive...which means we can't take for granted the days we have.

    Night guys.

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  • Surgery no 2.november 23 2017     23 November 2017
    Posted by: Sarah Powell
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    2 days ago we had surgery. It took about three hours, she went to sleep well and woke up well. She had less tubes this time and looked less confronting for us.

    Since rousing , she presents as amazing and you wonder how she does it. You can see her pain when she quietens down, which in one sense is good that now is identifiable but is sad that she is obviously suffering. And until yesterday she appeared to not want to admit it for fear of medicine going into her iv lines which she is very scared of. Most of the times she can take oral meds and that's enough but one night we had to make it happen regardless of her fight.

    I suppose sometimes you see the doctors wanting us to over rule her control because it's easier and it's "best" for her but on the other hand you want her to feel like we hear her and listen....

    One very clear case was today when we had an MRI and the anaesthetic Dr wanting us to administer the meds through her line, we said no,he kept pushing even though she too said no and then finally made another dig even whilst she was on the table. But then again he was the same Dr who tried to rush me one time when I missed her after she went to sleep. So much for people skills....

    But anyway.

    Charlie is walking,talking. Physio has signed her off.

    She's tired and still in pain but active and alert and behaving like herself.

    We have been so lucky. We just hope that with every future surgery she can recoup like this. ...

    Our current status is that we wait for the follow up MRI results from today to confirm they got all 3 tumours out.

    This cancer then goes for another biopsy and if the same as before , they will then consider what to do next.if it's different again they may sent it to America.

    The only other info we got is from informal chats from surgeon" I think we'll be here every couple of years doing this" , " I would consider radiation" and oncologist " times between surgery and next cancer often get smaller each time " , " doing cancer on a child this age is dangerous cos of The damage".

    Really what I'm trying to find out now is if there is possibility of a cure or are we buying time only...what does 3 tumour growths mean comparison to only 1 and considering this is rare ( the type of cancer that has only grown a handful of times in brain before worldwide) how can they gauge what treatment will work....

    Other then that we are still here in Auckland for another few days , now quarantined due to chicken pox scare in ron no playroom, no playground no social space....managing this handful of fun in the room is going to be interesting ☺

    Charlie however looks good. ( touch wood) Thank you guys for prayers and best wishes.

    Sorry that this jumps topic to topic. Doing these updates on a phone makes it difficult to review and write nicely...

    Ok. Bye for now

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  • November 15th - 1 year on from sickness     15 November 2017
    Posted by: Sarah Powell
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    Hi Guys ,

    So we had obviously hoped that 1 year on we would be moving forward - shutting this page and hoping that all would be forgotten.

    Sadly this is not the case.

    6 weeks ago , the MRI hinted at something coming back and regardless of hopes and prayers , yesterdays MRI confirmed what we had guessed.

    So in simple terms . Yesterdays MRI evidenced a larger tumour then before and a subsequent tumour. They are apparently not connected and the Dr hopes they have occured because not enough resection was completed , therefore leaving cancer cells. It has occurred in the same location as the previous.

    What this means is that next week , we are going back into surgery . We are yet to speak to the surgeon , but it is anticipated that a larger resection will be done . The tumours are located in the part of her brain that controls her vision , so this is obviously a concern for us, buts its a rock and a hard place.

    Ill update you guys once im in a clearer space to discuss.

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  • 29 September school starts      29 September 2017
    Posted by: Sarah Powell
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    This was a big week for our house.

    Charlies first practise day for school. Charlies three monthly MRI. And school trips for the big kids. I too was away for training with my new job.

    Monday was charlies big day. Thanks to our awesome babysitter charlie was reasonably prepared for school having visited on a number of days. On this occasion I sat it with her and watched as she was quickly absorbed into the sea of little faces. She was adorable voicing her own version of a prayer, waiting patiently for teachers time and quickly buddying up with another little cutie. So it went well. Thumbs up.

    Tuesday I was at the big smokes for training and so we're two of the kids in Auckland for school trip. I personally had concerns about us all coincidently being in a town that we never visit. I wondered what the rationale was and whether big things were at other words whether I should be staying one more night for more my daughters mri. I chose not to trusting my husband that I was being cynical.

    Wednesday came and jamie took Charles to hospital in Auckland. It went well and for onxe there was less trauma as she woke. She was upset but with the drip out of her before she woke there was significant less meltdown.

    Jamie met with oncologist and was told that there was something. He was advised that with clear bloods and the way it looked on the scan it was probably scar tissue. He was told we would have another mri in 6 weeks as a precaution.

    When he told me this I couldn't help but be cynical. Fearful that once again the doctors were buying time and trying not to have us pester them.

    Randomy on my way to work on thursday I had a car crash. Wrote of my new work car, 3 weeks into the job. Another sign that maybe something was wrong, a sign maybe I should not be at work.

    They rang us on friday with the news I had anticpated. So close to a year of clear mris and a feeling that we may have been a lucky one went out the window.

    A 5mm something is visible in this can. Radiologists have now viewed the scan and they say they are concerned that it is a tumour reoccurrence. is more likely to be tumour then not....

    So in 6 weeks we find out if we are back in surgery. Back in the hospital. 5 steps back.....

    We have to look at what now with my job. What now with our family. What now with my daughter. .....

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  • August 2017     7 August 2017
    Posted by: Sarah Powell
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    Good afternoon Guys ,

    I know im not updating as frequently as i once was. You could say this is a good thing - less noise from me in your inbox , and less drama for me in my home!.

    Charlie is doing well , all things considered. Shes her normal strong willed , energetic ball of fun.

    She has been sick recently , with standard colds we believe and because of this we haven't completed a routine blood test to check everything is officially 'normal'. The fear is that if we complete it now , it may give us a false positive (if she is fighting a basic virus).

    In our home we are stable. Kids are doing well , enjoying a handful of young livestock on the property and waiting to see spring arrive.

    Charlie is due to start school in November (a date we hadn't anticipated seeing over 9 months ago) and we are emotionally preparing for that change. I think with school , we will have to support her emotionally more so then the others , because of the lack of kindy but also her potentially being overwhelmed with schooling itself. Within the home , it will also raise questions for me and my husband - the last child starting school , our family becoming older and what that represents. Our oldest son can also start high school should we wish to invest in the daily commute to the next bigger city.

    This past year has obviously been very traumatic for us. Its changed my life and my husbands significantly. I hope that the trauma caused to my daughter and older children will be erased as time goes by. I wonder however for us as the adults , what these events will lead to , what path they put us on.

    I know for me , that i dont want the conventional future - working 40 hours , coming home for tea and barely 'living' outside of work. But im not sure personally what the alternative looks like.

    Its hard. The Cancer is like a knife hanging over , on the one hand you need to move forward , cannot live in fear of its reprisal but on the other 'letting go' is like forgiving all that has happened and risking 'it' sneaking up on you again. This past month when she has had a cold, you start analyising all the risks again. If she has a bad dream , you wonder if its a subconscious message - A bad mood is the forewarning.

    I wonder how much this cancer has changed me, more then the rest of the family. That i am reluctantly in a relationship/in limbo with this.

    and there i go waffling on....

    So in summary . Charlie seems well. Charlie has her next 3 monthly MRI in Sept. We sit in quiet anticpation.

    Any questions , feel free to ask

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  • Australia May 2017     4 June 2017
    Posted by: Sarah Powell
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    Good evening guys,

    I know I haven't written on here for a whole as thankfully there's been little to report.

    We have had two good blood tests and minimal illness for the past month.

    We did time it well and get a cought and cold for the period of our australia trip but with only 7 days there, we pushed through it to make the most of the opportunity.

    The gold coast trip occurred because we were lucky enough to be supported by a nz charity called the white matter trust, which supports families who have brain cancer specifically. When we first got diagnosed I put out feelers immediately trying to source what supports were available to us and this one provided obviously a huge financial support whilst enabling us to have some fun with no strings.

    We went to the gold coast after Charlotte showed a love of our nz theme park.

    This was our first overseas trip for my husband and the children so it was all very exciting. Thankfully because the kids don't have access to computers etc, they loved the ipad screens on the plane which the entertained the eldest. The cold had caused a high fever on that day so in one good way she was sleeping for half of it.

    The hotel was awesome. When we holiday we are often confined to a room as I'm a cheap skate. This was a plush resort with on site restaurant swimming pool and tennis courts. The house was flash and like a terrace back home.

    Day one at the movie world was horrendous. Lesson number not go to theme parks on the weekend...queues people eek.

    Day two we were a little more nervous but seaworld was the best. The combination of activities animals and rides targeted all the children. Really really good. We did two days nit because we didn't see it all but because we loved it.lesson two was to take a pram. I had researched and found that qunats allowed a pram and carseat could be carried in luggage for free, this not only saved us lots on hire fees but allowed us to keep going even when charlie ws tired.

    Our final theme park was the water park. We had anticipated that this would be Charlies favourite but it appeared that because she was still sick , she didn't like the splashing of the rides and prefered the plain pools. The rest of us loved however the great array of rides.lesson three was that tagging in was easiest way to manage the 4 kids. Sadly this meant we couldn't share all experiences together but means that we got the most out of the days.

    For the following days we repeated two of the theme parks and one day we did beaches and parks.

    It was awesome trip and defiantly an in incentive is there now to repeat.

    With charlotte as she is , I am thinking why wait, don't risk missing put etc.

    We do however have our next mri due on Tuesday so I'm hoping with baited breathe that, that will be clear and then I can look at where next.

    I spoke to our oncologist and if all goes well the time line is that up to two years we have mri every 3 months. They year 2/3 it becomes 6 monthly then annually. It feels like you are living between each scan and as the weeks get close you look for the signs more. Like previous thoughts it hard to plan any further ahead. I'm still weighing up work etc but even without an active cancer I know the trauma of surgery will.impact her transition to school in November and therefore want to be free for that.

    Anyway I'll stop waffling....let me know if anyone has any questions.

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  • 30 April remission or recovery?     30 April 2017
    Posted by: Sarah Powell
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    Without her hickman line and minus the incessant doctors appointments, we forget about cancer. There is no point in giving in time or space in our family. soon as it becomes a vague thought it blows up like a balloon. All the questions and fears that were there before, remain dormant in the shadows. All the uncertainty and confusion waits for you.

    The last contact with the Dr was with this 'maybe diagnosis'.Since then

    we are left in limbo with no further written clarification which was promised, or follow up calls to check our sanity. Is this remission? If no treatment is occurring ? Is this cancer free?

    I reviewed my daughters medical notes and question how they have come to their diagnosis. The swinging pendulum flies from one to the other with what appears to be insufficient evidence on either count. I wonder should we be doing more...should we be doing alternative treatment, requesting conventional treatment, fighting for an answer but would I be any happier with that.

    We are now nearly 6 months since Charles became sick and the memory of her symptoms fade and you fear whether you will miss it again....I question the doctors diagnosis and look at the general statistics that involve brain tumour...I fear the doctors don't know the answers and are simply brushing us off to avoid any more questions. I wonder if we were given a clear prognosis and treatment plan, how would we be living our life?

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  • 21 April 2017     21 April 2017
    Posted by: Sarah Powell
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    So charlies doing ok....happy to be free from her hickman line and acting like any normal little girl.

    It's very easy to imagine that she doesn't have cancer.

    However the news everyone has all been waiting for has come in, but for me is an anti climax and does not make me feel confident on Charlotte's predicament.

    A couple of days after Charlotte's hickman line came out and coincidently my complaint had been followed up, we finally got answers from the third and final american Dr.

    My oncologist worded it something like this ....

    " cells have good features that match AFH, ...there are occasional features that are more than we expect....there is a little more activity then AFH but nothing to pinpoint....there is nothing to say that it's a sarcoma....and we are pretty sure it's AFH but it's not very simple...we will wait and see what is not with complete certainty....not 100%certain ...3 overseas drs agreed on AFH but there are certain pathological features that are different/more aggressive"

    How would you feel?! It's not exactly transparent nor a strong report back about her diagnosis.The uncertainty and insecurity is evident in her word choice that indictated.

    So this is where we are now.....with a diagnosis that is inconsistent and unnerving.

    From my laymen interpretation, I see it that the Dr's don't really know what tumour this is. They have placed it in this category as its the nearest they've got but they have voiced their concerns that this is a more aggressive cancer then is typical of an AFH tumour and that there has only been a few located in the brain. I thunk they know its not AFH but want to give a name to parents so that we stop asking but vaguely naming a tumour and then undeermining it does not allow me to relax or feel confident in the medical treatment we are receiving. I understand their reluctance at doing further treatment on a 4 yr old girl but on the other hand it feel like they are waiting for it to return and then will if they are treating the symptoms not the cause.

    I feel disillusioned by the medical system at the moment, disappointed and fearful of the future.

    I don't know what else to tell you guys. What would you do?

    I've now complained through their internal system( who appeared to want it done and dusted) and have just completed the external process. I have investigated holistic measures but I don't know whether to consider international drs or whether to cross my fingers and hope.....

    They will keep doing MRIs but is this enough?

    If the Dr's don't know what they are dealing with, they won't know how best to treat it. In the meantime we are advised to attend appointments with local drs who failed to find the original tumour, in other words we are being managed now by the Dr's that failed us previously and we are supposed to trust that they would recognise the symptoms of cancer now....

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  • 6 April - Hickman Line     6 April 2017
    Posted by: Sarah Powell
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    It’s out. It’s out. It’s out.

    3 months later after it was initially placed for chemo we have decided enough is enough.

    The Hickman line has been a physical sign that my daughter is sick. It has hindered her play, stopped her swim and impacted how we see her and touch her. We have left it in, week after week, told by Drs that this week we will have results and that it is probable that treatment will be needed via that line. So we left it in until now. We also didn’t really know we had a choice. It wasn’t until we asked then suddenly a few days later we have a booking. If only we’d known that before.

    But even up until the surgery, the Drs ask me why we are doing this. This questions guilt’s you, second guesses you and challenges your decision. You feel incompetent and wasting their precious time. But you do it anyway because how long do you leave it in, with no concrete idea of whether it will be used. If it was me, I would have bitched and moaned the whole time that thing hung from my chest. I would not have ‘let up on it’ and I wonder is it because she’s a child that cannot speak for herself that the Doctors don’t really think about ‘how she feels’. My brother used the analogy of wearing a cast on your leg with no need...who would do that and yet that’s exactly what we’ve done for the whole of the summer....Our swimming pool closes in 1 week….so she can’t even swim now anyway. By taking it out, when it hasn’t been used, is actually aggravating in itself. If it had a purpose you could have justified the wait. Now you think - why didn’t the Drs just take it out immediately or let us know that it was okay to do so.

    During this whole process, I have often thought and compared the professional I was to the professional the doctors are. I compare how I used to work with clients whose feelings and thoughts I listened to but didn’t hear. I think about how now, these Drs give instruction, but do not consider the everyday impact these choices have on their clients. When they don’t call, if they say they will. When they don’t get results for months at a time. When they leave plastic, alien items in my daughter’s body which hinder her 'fun'...I understand that Drs are busy and have multiple clients and so did I, but sometimes we need to make time to listen....

    Regardless, the surgery itself went well, brief and minutes later she was free. She woke however badly. Really angry. We aren’t sure if this is a natural response to certain drugs or the stress and confusion when to her body feelings. On this occasion I couldn’t comfort her. These moments that have occurred a few times now are confronting for me as a mother. They bring you back to weeks before when these moods were everyday in the hospital and raise feelings in me of uncertainty. They make you feel like a failure. You can’t persuade her, comfort her or even talk to her. She won’t have it. I block the door to stop her inflicting more noise and pain on anyone else and herself and this aggravates the situation. You see the other parents concerned, hovering at our door, worried about her screams. You have the nurses not knowing what to do. This intensive moment is all encompassing, overwhelming and suffocating.

    It is a moment of shame and fear and anger .How fast we fall back. How fast we lose control. How fast it is all the same again.

    Dad came after about 30 minutes, and minutes later she flicked. Back to Charlie, like the little demon that bit me and kicked me and punched me had vanquished. Lollies were the golden solution that I had forgotten. Lollies the simple answer to everything. Dad says that it’s the same for him that sometimes I can shake her out of it and he can’t... But still in that moment, you feel crap.useless and rejected. Emotionally drawn from the confrontation. Upset about the look of anger in her eyes and frustrated that you couldn’t fix it.

    A few weeks back, I looked at medication to maintain my sanity, and someone said to me 'why would I want to switch off during this period of growth’, but what a "period of growth" it is.....Yes I am maybe more attentive as a mother, but I’m not sure I would have wanted to grow as a result of all this. .....

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  • March 21st. MRI no.3     21 March 2017
    Posted by: Sarah Powell
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    Hi guys

    So straight to the point: we had MRI on Monday on her abdomen, head and spine and preliminary results are positive. The oncologist sees no evidence in these scans of any cancer but wanted them to be reviewed accordingly.

    As I'm sure all of you are wondering , I also took this opportunity whilst being in auckland to write a formal complaint about the time period it has taken to diagnose and I've begun the process of changing Dr's to ensure I receive more "customer service".

    Dr advised no further news ffrom America.he states that considering it is 3 months post surgery and the scans look good there is evidence to relax a little about its aggressive nature.

    We have another mri booked for 6 weeks and we continue to wait for a diagnosis.The hickman line remains in, as a precaution for chemo.

    My reaction:it is understandably great news. Personally however the uncertainty about the cancers status until full clarity is made with a diagnosis and treatment plan means that I'm still on edge. I should be feeling elated that the results are good but the cynic and pessimist in me feels that I can't let the guard down yet.

    On a random note I overheard another mother as we waited on the oncology Ward about her daughter. She talked about how her 3 or 4 yr old was still in her bed and how pleased she was to have a drip/iv line out and the little things/little wins. It's interesting as this cancer is such a shock card and it's hard to gage the impact on the family other then the obvious but hearing this stranger voice some of the things we are going through resonated.Charlie is now my sleeping partner.She is now boss hog if all games amongst the kids.She is food critic and dinner decider , car stopper when seatbelts tighten and spoilt rotten. You can't pick her up in the same way , fearful of hurting her. You stroke her hair and see this scar. You subconsciously fear that this day may be her last. My husband is more of a optomist and I think maybe wants to return to some normality at home.I'm not sure I now know what normal will be for us....not sure if u can return.

    Many would say I'm lucky.I'm lucky that she is stil here today.lucky that her diagnosis has probably changed. Lucky that my little girl is getting used to these processes howvwer intimate. Its true we are.

    But I struggle. Struggle with the everyday impact.Struggle with the fearing fears and continue to come back to the question about what lesson have i to learn from this experience? I think this is probably just a fancy way of saying why me why us? You want to feel that by having this , there is a greater purpose, a lesson .You have to believe that this pain has a reason, that all this change and transformation on 6 individuals including my daughter can't be just because.

    You have to hope that something good will come. And that's not to say there hasn't been good times (see rainbows end again, pending ozzie trip, spending more time with older kids too-making time) but you think why did we had to be so derailed to enable a change of perspective or the like.

    I look forward to enlightening everyone to this when I discover the rationale....

    P.s picture is at rainbows end with me this time.I now know the pain Nanna felt on these rides.fearing her slipping out from the bars or safety rails whilst also freaking out at the heights.My daughter however lapped it up.loved it....Australia's gold Coast Charlie will adore.I'm tempted to pull a sickie!

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  • March 16th     16 March 2017
    Posted by: Sarah Powell
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    Hi guys

    So it's been a few weeks and I haven't updated this as there's been no news.

    One would like to feel like no news =good news bit it doesn't feel like that sitting here.

    Charles now has another virus, potentially due to the weak immune system from the previous steroids. It's hard to know and easy to fear that this is also the cancer playing tricks on her body making her prone to illness.

    Her cancer is all still in the air. According to the Dr call today, we sent the tumour to America on Feb 20th.they have yet to return results and he states this is unusual.He implies this is not down to process but probably due to the rarity and lack of knowledge and definitive answer.He appears reluctant to follow up with them and happy to wait more time even though saying that this is the longest time he has had to wait for a response.

    My daughter in the meantime still has these two tubes...the hickman line, coming from her body , left there as a precaution in case we need to do chemo or radiation.For the past 2 months,they sit on her tummy stopping her from bathing and swimming.

    It's tough because you recognise that you are your child's best advocate and yet nothing is progressing, nothing is healing and nothing is changing. Instead you see her suffer. With itchy bites and runny noses and external alien items tailing from her body. You feel a failure. A failure to protect her from this cancer and then a failure to help her three months later. Waiting on doctors who failed to diagnose it for 6 weeks and now fail to act.

    We have an mri booked on Monday.which gives some idea of where this cancer is at but living between these scans is crap. A life in limbo, waiting to pass a test and them waiting to jump accordingly. The Dr says we can't keep waiting on these American drs indefinitely but he won't give me a deadline for us to act.

    Attached are some pics of miss powell at the waimamaku wild west festival....As always getting what she wants (amother consequence of the cancer-fear of discipline or saying no for fear of the future).

    On a happy note: We have been gifted a crazy trip to Australia....flash accommodation, flights n food....We are in process of getting passports and figuring out when.This will be the kids first flight and overseas trip for all. This is defiantly something to look forward to and something we are grateful for , but because of Charlotte's inability to swim it would be cruel to go here until that is remedied.

    I don't know who reads these and I don't know if any of you reading, wish I would just shut up.

    I document it here , partially as its easier then starting a new blog on another site. I document it, hoping that I can look back at some point and say "Phew, thank gods that's over"...But during this midst, this moment, all you can feel is struggle.

    And I'm not even the one with cancer.

    P.s This pic of her blowing out candles, was not her birthday. It was big brother Ryans ....what was cut out of the pic was his grumpy face as she stole the moment!!yes we did repeat with Ryan after!

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  • 28 February. ...waiting     28 February 2017
    Posted by: Sarah Powell
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    I wish I could say that since my last update something significant has happened.

    But instead my days are filled with anxious waiting, jumping at every private number call, hoping that some Dr has made the decision about what next, the decision that is critical to my child's future.

    Yet instead I have got no further. Emails get replied with “we’ll let you know" and after such a delayed diagnosis l can't help but be cynical and untrustworthy and feel like we are forgotten about.

    From being gung ho and ready to start radiation 2 weeks ago, we are now in a state of Flux where I can't work (as who employs a mother with a sick child, I've recently discovered this) and I can't get winz (after applying 8 weeks ago there is still no financial support through them no matter how many calls I have made) and my motivation to read or play ukulele is waned. I've looked at study but have missed the start dates and yes I may be selfish and ungrateful that the Dr's have not said we need to do something g because she's that sick but if any of you guys know me, sitting still is not something g I'm good at...and it's ironic that initially you are given this death sentence which tells you and teaches you to live life and act now for fear of tomorrow but then you are barricaded in with other people's no's and I don't knows and not yet.

    You’re told your kid has brain cancer but then she behaves like normal and so you become complacent. ...maybe she doesn't, she can't have...looked at her and life in its normal state resumes in a sense of denial.

    And then on the other hand , every groan, every whimper and every mood swing puts questions into your head that it's growing back and what are the Dr's playing at?!

    It's funny you have all this time to do anything and yet instead you surf trade me or Facebook just waiting unable to start something productive...I think about sorting a holiday but even that feels too hard, took over my head...

    But enough about me.

    Charlotte is fine. ...still with her Hickman line in, that requires saline cleans and dressing changes weekly. She is handing that we'll thanks to my awesome babysitter...she's running amuck at home and being less moody. Still sleeping more and still bumping g into items. We have dentist booked for her tomo apparently steroids can mess with your teeth and now she's not so auto immune she can see one and we also have booked an app at specs avers the Dr's in hospital thought she'd have to wait till 10yrs old to see what her vision has been reduced to, but Specsavers thought they could figure it out using animals instead of letters to check....

    Nothing else to report....

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  • Thanking you and you and you and you and...     19 February 2017
    Posted by: Sarah Powell
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    When I listed this page, I had no conceptions about what we would raise. I knew that I needed a fall back plan, a support cushion if and when we would need it, in the context of my daughters illness.

    We receive some of the funds this week I believe and have no plans for it so it will stay in an account named Charlie’s challenge until something relevant or necessary arises. To be honest I am scared of using it for minor things, then to find out better treatment is overseas or medicines aren't funded etc...Currently we have enough for daily living so won't be dipping into this account to pay for broken cars or food on the table or the like.

    As we don't really know what this year yet looks like I believe this is the safest way to play it....

    Anyway to the point, I wanted to acknowledge the numerous and exceptionally generous giving from family and friends and strangers show's how compassionate people are when strangers donate, and it shows that however far you are from family, in this case, millions of miles, that you are still thought of and felt of.

    I think this time has taught me some things already.

    Don't take your health for granted.

    Think about how you treat your body, what you put in etc.

    Do the good stuff now before you can't

    That people can be kind and caring and compassionate

    That I need to share those same ethics in my future and with my children.

    And so many more lessons that are yet to come....

    It’s easy to identify the large donations that I've received and be grateful not only for the large dollar but also the energy behind them....the father whose cut his pension pay out in half by donating it to a daughter who lives a life away, a cousin who lives in France and hasn't met my little girl but has donated the equivalent of 2 weeks’ pay to us when she has a young family herself, the friend whose on casual irregular pay and yet donated 100 for petrol, the ex-colleagues who used to love me and appear to not have forgotten me, the friends of friends or my brother who put enough in to buy 10 extra pairs of princesses shoes and all the strangers ...the random people who hear a story and are compelled enough to care and give money to a family they don’t know and may never know, therefore taking away from their own lives and situations.

    I like to thank you all this great level of empathy, compassion and love.

    On an extended note of this, there are many who have not been able to donate but send their thoughts and prayers which one can only hope persuades the big guy upstairs to do the "right thing “and there are others who have painted nails, cut her hair, taken her on horse rides in their own time, others who have provided fresh veg and fruit to support a more holistic lifestyle and others who spend time with my little girl giving her minties, trips to the dairy and smiles at every contact who are invaluable to my sanity each week(you know who you are).

    I should also thank my children who must be struggling but recognise that at this time Charlie comes first. That these children who are great themselves in who they are, are holding it together and being normal silly kids even if they still have their spats and moments....

    And the husband....the husband who has yet to call it quits. The husband that cooks n cleans n does the akl run, knowing it sucks but does it cos Charlie loves daddy's play time. The husband that shares this crazy experience with and who has not collapsed in a fit of insanity yet. Yet being the key word.

    So thank you, thank you, and thank you.

    You are all appreciated.

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  • 18 feb     18 February 2017
    Posted by: Sarah Powell
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    This week it was my turn to akl.

    We had appointment with neurosurgeon and then I snuck in time with physio and oncology Dr too, again to save any extra trips to Auckland.

    It was an interesting meeting with the neurosurgeon and where many Dr's are relatively closed he seems to be upfront. He admitted that the diagnosis of ATRT is a negative one and that if it was his child he would potentially not do treatment as the prognosis is poor regardless. He also stated that he was the one that requested a second opinion on the diagnosis because of his concerns. He stated how this next year is inevitably going to be difficult, that we should try and separate the cancer form taking over our entire lives but that it will be a wait and see for much of the period.

    We talked about another diagnosis. ..Afh tumour which has fevers as one of its symptoms (like Charlie had) and how there are genetic components of this. We talked about how this has rarely been in the brain but how this is often a benign tumour, a soft tissue sarcoma.

    Apparently an American Dr believes that our tumour fits these criteria. They still however want to grade it, due to its aggressive appearance and rare location. Apparently there is only 1 other case of this tumour having the same genetic signature as Charlottes, in the world and that was a 55yr old male in his leg.

    Good news is that if it is an AFH tumour the prognosis is potentially better, bad news is that it's rare status means there is no gold standard of treatment so again the Dr's are using my little miss as a tester case.

    This potential tumour change could have positives, granted, however my concern is that after so many mess ups, wrong diagnosis, how do they know this time it's right....They are waiting on second opinions but I’m just not trusting anymore of whether they know really what they are doing , passing it over to someone else.

    We also saw the physio as we haven’t had a referral yet up north. She checked out her slight limp and movement and even though they wanted a decent assessment they felt she had muscle mass and reasonable movement in her bones. A plan will be set up for ongoing support for the future due to impact of brain surgery. Previously this has been on hold for a treatment plan because we aren’t sure whether we will be based at Starship receiving care or be at home…

    In addition, the Oncology Dr gave me notes on a similar study about a girl with an AFH tumour located in the brain with another genetic signature. He stated that we are waiting on another American Dr to get back to us about its grade, from being grade 4 it may not be now....this Dr is another leading Dr in her role and this will determine what may or may not be needed. He states that considering there was no blatant tumour at the last MRI, things look good... (However the neurosurgeon did identify a possible area that could be something or could be scar tissue another MRI is therefore booked in 6 weeks).

    It sounds like radiation is still one option or further surgery but chemo may not be necessary. Radiation however is not always great with this tumour though so it's all up in the air still. Surgery would allow further enquiry if there are signs of potential reoccurrence.

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  • Waitangi weekend (Good results of MRI)     18 February 2017
    Posted by: Sarah Powell
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    2 weeks ago we had a following MRI after Charlottes presented with symptoms that were concerning to us. Dad took her to Starship so that, if she was sent home he could then take her to rainbows end to make the most of the tiki tour.

    He went down on the Monday and was finally "released" on wed. The results from the MRI are great, swelling is still present but no evidence of regrowth.

    Jamie took little miss to rainbows end , the only theme park in new Zealand on the Wednesday and spent some time with her grandparents in rural Franklin and then came home.

    The pictures are little miss at rainbows end. she loved it as you can see....She liked freaking out Nanna and going up in the high pirate ship. She has little fear our girl.

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  • Tuesday 7th Feb - back in Starship     7 February 2017
    Posted by: Sarah Powell

    Little miss is back in Starship.

    She had deteriorating symptoms that weren't present post-surgery nor pre surgery. She was banging into things and tripping over everything; she had bloodshot eyes, reported headaches and was becoming moody again.

    When she got sick the first time she didn't describe pain and it was so easy to miss the signs thinking kindy had tired her out. This time we still weren't confident but thought it was better to be safe than sorry.

    Interestingly we rang the Dr Prior to the 3 hr trip south and they said don't worry as long as there was no vomiting or fever etc...But hey you can come in if you want...This response was not comforting. It makes you feel over protective and stupid. It makes you feel that you shouldn't worry and just wait it out for another week when the next MRI is.

    But after talking with family and between ourselves we think screw it, we won't risk our daughter. I read somewhere how we are the “biggest advocates” our children have and if we don’t act as that role, then who they have. That regardless of how embarrassing , stupid we may look , that acting in the best interest of our children we should indeed act , whilst knowing also that we know our children best , and that the doctors have previously failed – and missed things.

    So Hubbie took her in yesterday To Starship (as we have lost faith in the local hospital) with the hope that all would be well and a trip to the local theme park could be tapped on to make it less of a wasted trip.

    At the emergency section a CT scan completed confirms swelling. The on call Dr says that this could be normal after surgery and that symptoms could be linked with that but considering it is 6 week post-surgery and swelling in the brain isn't normal, that they may want to track it with blood tests or physicals....I think half of the frustration around this process has been the casualness to treatment. Initially prior to diagnosis we underwent lots of procedures, appointments were forward booked and plans were made. Yet here, now we have this traumatic diagnosis and we sit in limbo, with limited contact from our Dr unless we ring them. No follows ups except every 6 weeks. Told at one point, our daughter is grade 4 brain cancer, now in the process of “we don’t really know” but hey wait there and we’ll give you a call sometime….

    Thankfully the emergency doctor has bought the MRI forward as a precaution considering our reports. It is booked for this arvo. .there is a possibility a second tumour has come causing further swelling and I have no idea what we will do if that's the case....if the cancer is that aggressive ...I can't even fathom our future.

    Pics are of little miss n her shoes...she's not normally a girly girl but she’s dressed in in her big cousins pretty dress day before

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  • Waiting...     3 February 2017
    Posted by: Sarah Powell
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    So we are home.still waiting.with no progress.

    Attached are some pics.

    Little miss living the high life-getting her nails done

    Little miss and her expansion of shoes....

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  • Last friday:27 jan     1 February 2017
    Posted by: Sarah Powell
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    We were all set up for stem cell injections to commence last Friday, freaked about the harvesting but ready to some degree.

    We got a call on the Thursday telling us that we now weren't seeing the nurse but seeing the Dr.

    I mathed it out and came up with 6 possible reasons why this stem cell stuff was being cancelled and only one outcome was positive. Neither me nor Jamie therefore slept well that night, estimating what now?

    We travelled the 3 hr trip to Auckland as they said they wouldn’t let us talk on the phone and met with the oncologist on Friday. He tells us that the testing from the USA is still not back. But that there is a good Dr reviewing them who has suggested that it may not be ATRT but another rare brain tumour. He states however that our NZ Drs have potentially already ruled this other one out based on a genetic component it has.

    Our oncologist is now concerned about starting any treatment, not knowing what type of tumour it fully is. Each tumour leads to a different treatment plan including the lengths of treatment and the type of. The Dr however doesn't debate that this is still an aggressive cancer, but is less conclusive about its prognosis and its needs.

    The Dr says that apparently a tumour would normally look a certain way and does a certain thing and therefore that’s how they fit into whatever tumour box it is .Charlie however fails to fit in the box which is why they are now doing this extensive genetic testing in San Francisco to gather more information. He says that normally cancers don't need this level of diagnosis...on one hand it's good. Being thorough, checking what is necessary and what will work. But on the other hand in 6 weeks of Dr's guessing it never fitted a box then. It took 6 weeks to diagnose brain cancer because this cancer presented with a fever and limited other symptoms. Why now is this cancer going to “behave accordingly” when it hasn’t before? We were one week from death because we didn’t know, because no doctor could identify it then.

    So he wants to wait now, wait until there is some clarity.

    This is confusing however considering that previously he was adamant that we should want to start treatment within 5 weeks of surgery to achieve the best results but now he is happy to wait till after 8 weeks. Furthermore he stated previously that radiation side effects were ok; minimal even but at this appointment he acknowledges that it can cause long term disabilities...

    .I suppose this change shows you what a salesman the Dr is sometimes....try this, trust me, this is this....but then again how do you trust someone who is not transparent….we have already been failed by the system when they failed to diagnose her in reasonable time frames, let alone a system that only presents half of the story. You want to trust the Dr's, hope that they know what they are doing but it's not always that easy especially after the journey we have been through.

    On the first day of this news I was happy. Happy that maybe there is this tiny chance that she may have a better prognosis. Now I’m waiting each day, for this genetic signature and its results, wondering whether her tumour is growing back and we are just sitting on it.

    The pics here are from our trip to our local lakes...its peak summer so it's frustrating about her lack of swimming, but we are trying to not let that hold us back, when normally we would live at the lakes during this season.

    A couple of things we have been also working on are getting a second car on Friday. A little dinky that is cheap on gas and awesome. It will mean that during treatment, if Charlie chooses playmate daddy to go with her, I can visit mid-week to see her. I can’t imagine not being near her for 5 days if she is undergoing treatment. (This in itself has been a challenge, having her choose dad for hospital trips because he buys her more lollies and is more fun!!) At least with my snazzy new car I can pretend I'm not a mother of 4 and have 5 mins of peace within it, cranking the music…its funny the things you miss as you get older.

    We also got Peter, the new addition to the whanau. A grey n white rabbit. Charlie has wanted a rabbit since they bought some in at Whangarei hospital during one of our stints staying far he's settling in well. The big kids like him too and I hope when treatment does eventually start he'll act as a comforting measure for little miss.

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  • The Haircut- "Mohawk like Olis"     26 January 2017
    Posted by: Sarah Powell
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    Knowing that she will loose her hair within weeks of radiation we had decided to do 'the cut' by choice. We thought this may soften the blow for all of us , considering how long it was before.

    We showed her pictures of what we could do and she stated that she wanted a mohawk like big brother Oli ( even though he dosent have one) mohawk it was...

    A lot of her hair was still matted from dried blood in the surgery. It was hard to wash because of the Hickman line and no showers , and how tangled it had become after the 2 weeks in hospital with limited preparation.

    She likes her haircut that did locally and keeps styling it with her hands to make sure it stays peaked up. It's funny though looking at her, seeing how much gender is wrapped up in her hair...and how if hair loss is permanent, how that will feel for both her and me. We are lucky that she can 'pull it off' beacuse of her arrogance and strong character, but stroking her newly short hair is understandably a little different for me.....

    When she looses it all, I wonder how I will adjust , not her!. One of the positives of her age is that her identity is less focused on her physicality. I do wonder though myself when people look at her now , what they are thinking. You know they see the line and question that and now they question her gender - i suppose this is why the bows and the pretty dresses come out - how fickle we can be..

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  • Chipmunks in Whangarei     26 January 2017
    Posted by: Sarah Powell
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    Another ultimate to do for a 4 year old....

    Inflatable slides, ride on cars, ball fights.....

    Tough life for Charles....You just got to be careful of her lines , worried that one slip or pull could be exceptionally painful.

    Trying to think of activities that are important and suitable for a 4 year old is surprisingly tough. We could easily just hang by water all day long, but you want to make sure you’ve ticked off everything you can. We don’t know how tired or sick she will be with infections during any of this treatment, so again you want to enjoy things whilst you can.

    It’s hard for me though, as the honorary cheap skate in the house, spending money "willy nilly" is a new thing. I understand it and I agree to it, but seeing the coins coming out, is something I have to get used to.

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  • Horses      26 January 2017
    Posted by: Sarah Powell
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    One of my to do's with charlie was to take her for a horse ride.

    I'm not a big fan myself or such a big animal but I liked the idea and thought she would too.

    We took her to Baylys Beach horse riding and took her around a paddock or so.

    She was a reluctant participant but once I was with her she enjoyed it. Shame that I was freaking out any time we were on uneven ground! Im not much of a horsey person even i like the romance of it. I'm too scared of being kicked or falling off.

    I have to admit though she looked like a right cutie in her riding hat and red jacket...

    At the moment, these little activities give our days structure as we wait, wait and wait for the next challenge of our journey...Not knowing when or if she'll be able to do this again.

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  • Home life - 23 January 2017     23 January 2017
    Posted by: Sarah Powell
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    At home we are working through our bucket list, not that we voice that fear.

    We are doing the activities that we want to share with her, in case she's in the "other" percentage....

    Swimming was her thing until the Hickman line was put in. It sucks to be in the middle of summer and not being able to take her to water You are always cautious of infection and the Drs have no advice or no waterproof plasters that can allow us to take her .The best alternative we’ve got instead is the water you can see in the attached pictures she’s happy with that too, but there’s only so many times me and the kids want to get doused with cold water, for the sake of a few laughs.

    Our next appointment is on Friday. Apparently we start learning about the drugs for stem cell harvest and potentially they will be injected into her to create more stem cells) .this is to allow the highest dose of chemo to be used. They will give her chemo, and then post treatment injects her back with her stem cells to support recovery. It’s like taking her to deaths door, then giving her V, hoping she’ll pep up.

    Injecting the drugs sounds crap but the harvesting is even worse. Apparently it will take 7hrs attached to the Hickman line for the stem cell to be harvested. I have no idea how we will achieve this....but then again what choice do we have.

    On a side note we are looking at the complimentary therapy...the turmeric, the probiotics, the low GI diet is all being reviewed by myself.....there is also a naturopath in akl too that I'm looking into....I've been reading a bit about cancer and it's increasing epidemic status. Some research talks about how lifestyle factors may influence it.

    My favouring book was called “anti-cancer” I think, it talks about these prognosis graphs, with the peaking point creating the average/median expectations, and then this gradual slope of survivors. this book talks about how these graphs only categorise you according to your diagnosis, not anything about your diet, your weight, your age other words ....these graphs can prove that some people live longer than that' average' ...I just need to find out how.

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  • Last week.     23 January 2017
    Posted by: Sarah Powell
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    So Charlie was with dad from Tuesday until Friday at hospital....They met with the child cancer charity team who gifted us a little but generous package of items. He met with oncology, and radiation drs to start setting up the masks and preparing for radiation.

    We have a start date of first week in Feb. From what I read and even the process that Dad has been doing this week, radiation looks ok....not great but achievable. Dad has seemed to settle Charlie into the rhythm of hospital and he has not reported her mood swings or bad reactions to the Doctors that was endured in the lead up to diagnosis ( where she would shut everyone out the room and baracade the doors etc).

    We do the radiation early in the morning and then after lunch you have your day to do as you please. I've been looking into animal farms, easy walks and bus trips etc....finding thing's to make it fun and pretend that it’s an adventure.

    The more however I read about chemo.....I dread. I can only imagine the pain and suffering my little girl will endure....that the Dr's will essentially be poisoning both her healthy cells and cancer cells. I wonder how me and my husband will cope either of these. Whether he will be stronger as he will disconnect from the emotion of it , or whether I will be needed to physically comfort our little girl.

    The picture attached is life inside Ronald McDonald and the creams, merry go rounds and face are ironically killing time till the next appointment or trying to stop her from being more of a handful in a place that's not your home. Managing her is always “fun” , but in the confines of the hospital , with limited toys or easy entertainment , it requires a new skill set. Dad seems to be better at this.

    It's funny. To some degree you can be spoilt staying in Ronald McDonald...with a full pantry, a dishwasher and a room like a hotel...but then it's not your home so you can never relax or fully switch are always trying to manage the tyranny of a 4 yr. old who at home would climb all over sofas, draw on walls and behave like the cheeky monkey she is.....

    On one hand you are simply ‘managing’ , ‘coping’ , ‘waiting’ , and then on the other hand you are panicking that this how she may live the remainder of her days…so you need to make good times , take heaps of photos …

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  • Radiation preparation - 20 January 2017     20 January 2017
    Posted by: Sarah Powell
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    This week, little miss began preparing for “what's next” – our new future of Drs, and general anesthetics and tests.

    Dad and Charlie went to Starship on Tuesday; met with her new Radiation Dr’s and we got the low down about what it will entail. In summary it will be 6 weeks, everyday but completed by lunch. She will go under general anesthetic every single day, to enable her to stay in the same position for them to direct the radiation to the necessary part of her brain. Radiation is normally targeted to the area where the cancer was, there is always risk however that the radiation can damage other positive cells too, and also there is apparently studies that having radiation itself can lead to increased risk of brain cancer. They don’t tend to do radiation on children younger than 3 due to the potential long term damage caused by it. This small print makes you jittery. You know it’s necessary to attack this veracious cancer with everything we have, but knowing that long term – if she survives, there is probability of issues with her development.

    Regardless this week they put her under GA 3x, to create moulds that she will lie in, so that next week hopefully we can start.

    It's a sad reality that she is finding the mask that puts her to sleep a little more normal and according to Dad went to sleep more quietly. She’s still fighting any use of the Hickman line, but who wouldn’t. It’s bizarre seeing this alien object hang from her body.

    As you will see from the pictures marmite and toast is a favorite, this and the obvious ice cream.....When she was on steroids in the 6 weeks prior to diagnosis, we would wake in the middle of the night to eat this. She was often too sick to eat much of the day, so we would confirm to this desire to ensure no feeding tube was needed.

    For Charlie, she's doing OK says Dad. Coping with the environment and taking advantage of the daily lollies and merry go round at hospital, that Dad spoils her with.

    For me however, reality is starting to kick in. The idea that my little girl is really unwell, that I will see that, not only in her need for medicine, her hair and weight loss but I think in the fear it attributes once you leave the hospital grounds and she coughs or is a little warm. You are always now panicking m fearful of what the Doctors missed for so long and what they could miss again. You say ' it is what it is’, recognizing the lack of control we have but sometimes you just want to bribe, beg and plea for 'it' to be different.

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  • My girl "pre-cancer". 2016     20 January 2017
    Posted by: Sarah Powell
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    Having grown up with 3 older siblings, my girl has learnt to be strong, sassy and awesome. She has a great sense of humour, knowing how to get dad or her brothers to conform to her desires. She is clever enough to play off the babysitter against mum and dad enabling her to be taken to the dairy on a whim.

    Prior to all this , she was not timid but outgoing – socialising freely at Playcentre and easily putting physical distance between parent and child. She would say what she wanted and strop if she didn't get it. She would staunch you out with that look. And yet in contrast , my daughter would sleep in your arms, toying with my hair as she soothed herself. She loves you with everything she has. She is so physically intimate with me particularly. I think she’s an “all or nothing” kind of girl.

    Here in this picture, she stripped petals of flowers whilst giggling, on holiday with us, knowing that she was up to no good. That was only in April this year, which now feels like eternity ago.

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  • Pre sickness and Post surgery info. 17 January     17 January 2017
    Posted by: Sarah Powell
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    Charlie had been sick for 6 to 8 weeks before the Dr's figured out what was wrong. She had high fevers and was fatigued but minimal reports of headaches or vomiting until the final days. Initially we had guessed it was a simple bug, linked in with starting kindy and being overwhelmed by the change. This led to us initially managing symptoms at home. 2 weeks later, the day after her birthday I took her to the Dr and they did a blood test. They measured her CRP – an inflammation marker which would normally be under 10. Hers was over 100. The Dr sent us to Whangarei hospital for diagnosis. This was our longest stint in hospital, 13 days. She endured scans, MRIs, 2x daily bloods, OBS, ultrasounds and physicals. They found nothing but originally felt it was “atypical Kawasaki”. This diagnosis later became “Systemic Juvenile Arthritis” and so they waited more time for final symptoms to present.

    Over the period we were admitted into hospital on 4 separate occasions and I’m guessing now that over 10 to 20 different Drs missed this golf ball tumour in my tumours head.

    Just after Xmas, we went back into Starship as on one occasion Charlotte starting screaming, this high pitched noise. It unnerved me and was the first time she was vocal about her pain. We estimated that she must have been suffering before but was disclosing it. We thought it better to go to Auckland hospital – The epicentre for children’s care, hoping that now something would be found. For the two weeks prior to Christmas she had been vomiting, but again this looked like a direct response to the steroids that they had given her intravenously over 3 days (as a generic response to her ongoing inflammation, that they hadn’t identified). We got to emergency department about 10 o’clock at night and they chose to do the MRI as a precaution on the head on the next day.

    I remember them telling us. We had our whole family with us, and we had been waiting in another part of the hospital for her to wake from the MRI. The Drs struggled to locate us but then started to ring different places as if it was important to speak to us quickly. We were taken to site, and then suddenly there was about 5 Drs including the previous specialist we had dealt with, the surgeon, and another paediatrician. They pulled us into a room, all of them making eyes between themselves, probably wondering “where best to do this”. My 3 older kids were suddenly occupied by a junior dr. I asked them up front, what the bad news was. They told us.

    In the movies, the women break down. The husbands get angry and storm out. We didn’t do that. We sat there and asked questions and I remember looking at my husband trying to process this, as if it wasn’t real. It was like an out of body experience. No emotion was felt and it was just confusing. I think the Drs wanted us to cry , telling us that we could and all that , but when you are faced with a wall of Drs , all staring you , analysing your body language and what feels like judging .You cant. You just want to gather your kids and go see your little one. You just want to go to another room and talk to your husband about what the hell you are going to do.

    By Friday (the next day – December 30th) we were in 8 hr long, emergency surgery, being told that we would have lost her if we'd waited another week. The surgery went well, but seeing her after it, wrapped up, with cords everywhere and drugged, it was exceptionally confronting. You need to be strong for your kid but its graphic and ‘real’ and hard.

    The pics show some of the images we faced. We were lucky in that she recouped well. Was conscious within suitable times, was communicative and angry but alive. Some kids/adults even would have been sedated to allow the brain to heal. Her progress and recovery was shocking and lucky. To some degree the speed of her surgery after diagnosis, the speed of her recovery gave us an illusion that it was all going to be ok, that she was well. We escaped the institution of hospital after 5 days.

    The biopsy was sent and we went home. Results came in last Wednesday and as the title page says, the news was crap. This rare tumour whose previous prognosis is about 20 to 30 percent was what was causing my kids fevers. They couldn't explain the lack of symptoms. They advised us that radiation and chemo were key.

    Next day was more surgery - her Hickman line was put into her upper chest, a tube which connects to an artery making it easier for medication to go in and bloods coming out. She had a lumbar puncture with Dr's looking for a secondary tumour site and a sample of her ovaries removed due to her loss of fertility which would occur following chemo.

    This time in my life is one of the hardest, being in and out of hospital is stressful – the poor sleeps often caused by screaming sick babies, the lack of decent food or natural ‘personal space’, entertaining a 4 year old kid when tethered to lines, the separation from your whanau , in addition to the trauma that your child goes through with tests , and surgeries and pain. It’s one thing after another. It becomes a matter of survival , waiting until you are released like a criminal seeking redemption from jail. You just wonder when this journey will end and how. Chemo and Radiation is a long journey ahead and you wonder how strong you are to survive it , and how strong your little girl will now have to be.

    PS the pics are a combo of pre sickness and post-surgery. Now this page is up I should be able to make them more logical.

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