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young mum of 25 Terminal Cancer Epithelioid Sarcoma from hand to lungs in 2 years

  • Miracles exist

      18 March 2019
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    so this is an update I truly am puzzled how to write....we just came from Hospice dr appointment and came out shell shocked but ecstatic...

    Cancer

    however rare, is, able,

    to be beaten.

    We are winning Shadow-Ruth is no longer Terminal she is officially off the hospice clientele list. yes she still has Epithelioid Sarcoma but the ones remaining are small and not life-threatening.

    SO YES WE HAVE DONE THE IMPOSSIBLE WE HAVE SAVED MY DAUGHTERS LIFE

    NEVER DOUBTING MY GUT EVER AGAIN.

    ever have a pressing weight upon your chest making it uncomfortable and feels very lethargic in its application...

    that is what this journey felt like.

    A huge weight i was bearing has now been lifted and life shows there is always hope there is always a way out of dark recesses....

    .start believing in living proof and not what negative polititians say....

    I am so frigging happy I am so very very appreciative of all help coming through this and beyond...know this ...I thank you.

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  • how were doing thus far

      9 March 2019
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    so this is quite a trip isn't it. We have all discovered many things about ourselves in these few months since the last updating to this give a little thread. My Daughter is still with us and seemingly a shit load better than previously.

    I have been busy painting as the angst of these 3 years has begun to take its toll on my psyche. The paintings I have done are available for sale and the proceeds will join this to help pay for the end commitments and for the kids and I to do the future with... Its a long road admittedly and watching this journey is all time-consuming...we have learned who is there for us... and those who just said that to look good at the time...we are still on this journey...we are still caught in its grasp and we won't be over it all even when all said and done as we will need to heal from its tease its intimidation and its angst. Please if you know someone who may want one of my artworks please mention them and help add to this fund.The Art for sale is in the Gallery please peruse.

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  • new news

      4 December 2018
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    So Hospice decided to check into how shadow is doing and they chose to examine the last two x-rays taken, the first in August before her Radiation....we are not out of the woods yet but we are having a grace from directly terminal....and being she was not meant to last till November of this year and we are now in December.....woooohooooo we will keep her seens as you don't require her yet....woooohoooooo so the picture shows the left being august where the shadow is across her lung on the left of that pic then the Oct one where its clearly evident the lung is back to see through like a normal lung..... seriously folks now we can do stuff she was unable to do because her energy levels have multiplied to be able to do so... We just did a little road trip thanks to you visited some special people and had family time....Paraparaumu and Otaki were visited and shall be again with more planning rather than impromptu with the fear of running out of time....so now I ask please share this around again as we need to generate movement again as this has stopped generating so please help us to make this happen and remember after she is gone this will be put towards the kids and us to stabilize after losing her which yes will still happen just not right now like we were told by medical professionals... this is good isn't it??….yes of course we get to keep her around till the makers of us all decide its her time to go to them. Thank you for reading I appreciate that you took the time to read our journey.

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  • a parents perspective

      27 October 2018
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    so thought I would delve into what days are like for us. With my daughters diagnosis has come many different versions of us all.

    I find that some days all I want to do is cry but I don't. My job as mum, nan, aunt, and friend is to deal with how everyone is coping. I am constantly doing and have little rest or alone time. As a parent you know as I do time to oneself is quite important even if it is just to calm and listen to the silence...there are not many times there is peace and quiet.

    Another facet of this I have found is I am having to protect her from her own decisions that the ramifications of such seem un-realised and thought little of. She now drinks with no stopper and if shes in that condition finds it hard to say no to other things offered.

    I am spiritual in many ways I live with constant conscience on how my actions affect those I love. Young adults teens and kids don't think of that stuff so I am a constant conscience reminding of all options available to them.

    This whole journey has my heart in pieces and keeping my composure is quite trying. gone are the years of having people close as those in the past bought lessons that affected the well being of my children so began the scrutiny of everyone watching for hidden agenda's and fool hardy choices. Adults that act like kids being irresponsible actually show younger ones a way that will most likely be detrimental within their lives.

    I dread the days where I will have to watch my daughter struggle to stay alive I ponder constantly if I am strong enough to cope....well fact is I will just have to the younger one's depend on my solid as a rock way of being.

    This hurts folks it hurts like a pain I cannot find the source of yet know full well where it hurts. If anyone truly has anything they wish to ask me without being here I am on face book under my name in Palmerston North. send me a message ask please give me someone to discuss this with. allow me to enlighten you to whats coming if your child has come into the same bracket... information brings structure information gives confidence information is imperative.

    Yes I find this hard its one of the greatest events of my life. Epithelioid Sarcoma kills it doesn't go away all together it never does once the cells have been mutated into this cancer it consumes the cells around it. there is no escape thats the utmost truth you may be clear for years then she comes back with force popping up everywhere.... my opinion.... if you have found it in you set things in order and live ...live with no boundaries excel at fun...cherish those you love show as much love as you can and know this thing once with you remains with you until one cell ventures off and causes havoc. don't let them biopsy it then leave you alone for months...this is it's opportunity to run a muck as it has been hurt and it freaks out and starts off elsewhere. This is when it goes to lymph nodes and or blood...from there it can go to your lungs central torso limbs and or the brain.

    Honestly this is one of the rarest ones and its supposed to be a slow growing one but alas different environment I see it alters in a manner that can be described as predatory.

    I wish this on no one. As a parent watching her child deteriorate at an alarming rate, only I seem to see clearly, if this is your life too please understand its not them its the cancer they will hate you despise you and treat you like a slave even treat you unkindly at a lot of the time....but be patient guide them and be there no matter what...hugs cuddles and reassurance you are going nowhere are important. She needs to know no matter what she throws at me I will not let her go through this alone ...she is my baby girl I will always love her no matter how she treats me I will not give up I am in this for the long/short of it all.

    Thank you everyone for reading I am sorry I write mini novels but I have so much to say when all said and done its good to let it out.

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  • artworks created by turmoil

      26 October 2018
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    please note latest photos added are of the Artworks created from this journey the only outlet I find soothing.

    The Art is my visions within the clouds my answer to whether my faith was foundered on truth or fantasy...these have me believe that the answer speaks for itself... I draw from what I am shown and this time the stress of it all bought out these and more.

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  • home again

      22 October 2018
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    well lord knows what caused this stint in hospital but yeah its all part and parcel with this cancer that odd things go bump in the night... no matter she is home under my roof and doing okay again..perhaps the undisturbed sleep is essential now so we shall look at achieving that for her .. time out may need to occur sooner than we anticipated. she is enthusiastic to create memories with us now so let it begin time to commence family Magic tripping the light fandango into this with open eyes... guide me now my guardians guide me now.

    Thank you for taking the time to read this and offer your support and donations towards this it is an amazing gift giving from your heart ...our hearts beat for you all...

    this mother will accept your help , I am glad I spoke up and started this page, its heart filling, gratitude and respect for your kind souls. Arohanui xx

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  • another hospital visit

      22 October 2018
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    Bought my daughter into A & E as she was disorientated and confused... CT and X-Ray taken early hours... awaiting results as to whether there is an underlying brain infection going on... Nausea has passed and sleeping continues while we wait.

    After we get the report I can take her home again and tuck her up in bed.. this was one time I truly felt the ramifications of this disease.. I thought I was ready to deal with this but last night showed me I have cracks in my Armour....she is my Achilles heel I knew she was ... my heart needs reinforcing with more love so that's the script written for myself...

    I see there has been an influx of donations and I am again humbled by all of you I just cannot say how much it means to know what we will need at the time and prior will be able to be implemented. So THANK YOU SO VERY MUCH EVERYONE... AROHANUI XXX

    GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE COURAGE TO CHANGE THE THINGS I CAN AND THE WISDOM TO KNOW THE DIFFERENCE.

    Our father who art in heaven please bring me the strength to see this through as the mother I need to be , give her time to be with us dude please don't be in a hurry to take her home...help me help her to remain here with us as long as humanly possible...please father hear my prayer.xx

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  • Mums words

      21 October 2018
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    I'd like to explain as it has been asked.....my daughter has been doing her thing going where she needs and doing as she pleases that's the best part about dying....she has no limitations upon her, bar, what may hurt someone else, those are the times when I speak up and say ....na if it injures or hurts another or places the general public in harms way you are not doing it....

    ??.. who has a bucket list with....Commit a murder upon it....lol...lol....daughter you are living in a Television reality....lol

    I just wanted to touch base and let people know I am not collecting for my daughters cancer as she has spent the last year tripping about the light fantastic while we sat watching.... we didn't get involved because this was her choice so hence ......

    this page is to bring to my grandchildren and myself and the brothers and the extended family that was left out of her needs to live as she saw fit.... my choice to grant her choices.

    I have spent her entire life ensuring things ran smoothly yet like any parent all the love in the world wont bring good all the time bad gets in and it devastates or conditions....

    I am not someone that pawns their kids off every chance given I do the hard yards I sacrifice my time my wants needs for their sake as that is how I feel a parent could and should be towards those bought into the world by our actions.

    This is something I need and I feel will be beneficial for the children in the grieving of their loss.. I am honest the children know their mother is dying and are kept in the loop regarding her state of being.

    As a mother this is like living in a nightmare come dream state.... I am powerless to prevent this....I have no way to save my daughter I can not swap/trade places There is nothing bar understand , assist and care for her till she passes... if you're a mum you know that this feels like one's baby being ripped from your arms and taken with no hope to view their smiles ever again bar within my memories...

    Please understand I am not doing this for a free ride as someone said to me....but to develop the healing process and bring joy where sadness will dominate if permitted.... I am a worker through all this I have been unable to provide to the best of my abilities and its been evident ... the things I am having to pay for over and above the household budget are just breaking my financial back... it's not a pleasant feeling with being a provider all my life ...I work I don't want to not work I am active 22 hours of the day I don't rest I'm like the energiser bunny...batteries run low many times affect my appetite and have me fight to regain stability in my health....this is not easy by any means.

    I want to bring happiness back in a time where most cry and dismay on regrets and hurts unanswered....

    We intend to celebrate my girl we will not be in black we will share white as she enters into my old kingdom...next to those whom love to watch the daily shows of life our families already passed.

    She will be in good company My Mother Step Father and Father are all waiting to receive her plus her bestie Jess and her Manny... she will be a welcome addition to their viewing days and will endeavor to show me my faith is foundered and I will know peace ..

    I am ready as I will ever be this is no parents wish yet its the making of any parent losing a child at any age is heart breaking.

    Mum xxx

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  • additional thought...

      4 October 2018
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    I would just like to say I am very open about this and in reality many go through similar... if there are or is anything you wish to ask about this form of cancer and its effects /affect upon us all or my daughter please feel free to ask. I am open and honest regarding this as my experience the experience of us all may help another ride through their emotional upheaval of this cancers rapid and quite overwhelming growth since first diagnosed. To explain is in it'self therapeutic and enables me to cope with all the fall out amidst my own family dynamics. It's a parents worst nightmare one I would not wish upon another yet it is what it is ... I am willing to answer any and all questions on anything regarding this all. Mother , Nan... No.1 fan, teacher, carer, Imitation Rottweiler...lol.

    In the gallery the first picture with circling of the lung is where it first Metastasized in 2017.. after having entered her lymph nodes... the one next is how it looked in September of this year and shows a grey shadow which is the volume its engulfed covering her bronchial .right and now her heart.

    the center picture below shows the right lung overtaken by the grey leaving under half usable..it also covers the heart and this is the Metastasis Tumor a different form of Tumor originating from the Epithelioid Sarcoma ...the lungs are shutting down the breathing villi. For a Cancer we were first told was a slow growing one, rare, yet approx 5 year from when they found it rate of return upon removal..... yeah Na it became aggressive when biopsied... perhaps a clue within that to not touch it air obviously Mutates it.

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  • sincerely grateful

      4 October 2018
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    I just wanted to express my gratitude to all those whom have donated and whom have taken the time to share this around to as many as you have. I really am humbled by the generosity shown , thank you we are on the way to achieving the dream of actually being able to grieve and continue when this demands focus as my daughter's progression seems aggressive and unyielding. We value the support shown. may you feel the light of our love ..xx

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