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Hellena Update


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A few months ago we discussed blogs we missed and Hellena and Currawong came up.  Someone directed me to a thread that @Hellena Post had posted in while I was in the hospital and I missed her visit.   I emailed her and asked if she would come give us another update.  She responded and told me she would "be brave" ;)   I've reactivated her account and emailed her so I started this thread for her to update us how everyone is doing now.

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I completely missed her visit too.  I really hope all is going well for her son and that she, Currawong, and family, are all OK.  

I thought Hellena was a good Rainbow egg with a great sense of humor, and just an alternative life-style.  Not my choices, but that's OK.

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I hope she drops by too and that Merlin is doing well. ALL treatment is extremely long and arduous, although it has become that due to the good outcomes that protocol brings. It's very tough on the kiddos and the families going through it. I admire Hellena and Currawong a lot for their flexibility in their beliefs around things like health and schooling :) 

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You mob trip me out, in a good way these days :)  And yes, everything is going surprisingly well!!  It is a long haul of a treatment, three years seemed like an endless eternity at the beginning, and 18 months down the track it's the longest constant care I've ever been asked to give.  Happy to give it though, and our life has settled down around it nicely.  When we first got here, I had to swim through a sea of pyramid-scheme-snake-oil-sellers of the alternative variety, till I finally found the real deal, two folks that have a shop called the Hempothecary up in Montville open 7 days a week, who have a oil for cancer symptoms (a few different ones too), called Cannopathy, which has cannibas oil, frankincense, gumbi gumbi, and herb robert in it.  They reckon (and it made sense to me) that injesting cannibas oil was fairly hard for the liver, and rubbing the oil on feet and letting it be taken up through the skin was optimal, so I got a resounding approval from the pharmacists to use it, and we haven't been into hospital overnight ever since.  Could be a whole heap of contributing factors to that one, because we were madly trying to find somewhere rural to live after the initial shock, but every time we got serious, he'd go into hospital overnight, and we'd realise anew how much it would suck to be far away from our hospital, so when we finally just decided to stay in inner city Brisbane, he stopped needing to go in so much.

We love and adore our hospital mob, from cleaners to Oncologists, and they love us back.  I could tell you so many feel good stories about our interactions there, it's unbelievable.  Our Oncologist, Morag, the Scottish woman with fiery red hair, is just divine, and has taken us all under her fierce wings, and I trust and love her a lot.  Makes us both cry when we talk about them, because the total embrace we've felt from them all has been truly amazing.  The hospital school also embraced us and our kids completely, and have all helped us out in so many ways. And Merlin just adores going in to hospital so much, that he's asked us for a calendar, so he can count down the days :)  He's had a huge journey with needles, from going alright, to having an allergic reaction to Peg Asparaganaise and needing a shot of adrenaline and getting IMMENSELY needle phobic afterwards......having to hold a screaming kicking traumatised kid down while he gets needled, would have to be one of the most horrendous things I've ever had to do........to now......he takes his needles like a legend, and goes 'Yay!' when I tell him we're going in for a finger prick.   Going in to hospital remains a highlight on our social calendar :)

His hair's grown back, he's gone from needing lots of special treatment to blending in with the rest of the boy pack more, him and Max have a whole new found love and connection for each other after being separated for the first time in their lives, and overall he's really really happy.  The rest of the kids are also thriving, my Griff has himself a full time job and beautiful girlfriend who has been enveloped into our family along with her family as well.  The girls are absolutely loving school and their friends and are totally excelling.  In a year and a bit of gorgeous mainstream educational attention both in the hospital school and their state schools now, they've basically caught up with most of the gaps and are doing great at their year levels.  Spiral became class rep at her new school within the first few weeks, and has already gone on camp and done interschool sport, and they're so motivated to learn and experience all the things in this opposite world to where we lived.  It's so funny, but we copped so much flack for our different choices in hippie city central Nimbin, but now flung into the mainstream educational system, have found nothing but acceptance, validation, support and acknowledgement of the great job we've been doing!  We're all continuing to be blown away by this embracing and friendly city we're living in, and all the folk we're interacting with, and all the positives that this 'negative' experience has brought us.

We've moved to another posh house with a pool in a rich suburb, and the schools are some of the best Brisbane has to offer, and all sorts of opportunities are opening to us, including being offered a holiday house back down south to help a friend look after her animals, which means we can continue as we seem to be travelling......with a foot in both worlds.  So our little boy pack who have all resolutely asked to be homeschooled, can go out bush and have adventures in nature and all the loveliest things that our older kids got to experience too.

You knew this was going to be an epic, didn't you :)

 

Everything is pretty bloody groovy right now, and I'm greatful for all the well wishes and thoughts that have hit us along the way.

 

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5 hours ago, browngrl said:

Glad to hear that the whole family seems to be doing well!

It's a constantly delightful surprise how well everyone is in such an unexpected reality...

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It’s so great to hear from you and I’m thrilled that everything is going so well. Sending you and your family lots of love!

ps please stick around. 

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Thank you so much for coming back and for the update.  I am so happy that everyone has been surrounded by hope, love, and joy during what could tear apart so many.

This may be a small thing to bring up, but you mentioned having to hold Merlin down for his needles.  I know the heart wrenching pain that brings, the fear the tears the hurt and betrayal they feel afterwards.  My daughter is like this too.  Could you share how you helped him through it?  The nurses and doctors we have seen don't have any patience when my daughter is in panic mode.  I have come up with certain ways to help her, but her fear is heartbreaking.

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On 4/29/2018 at 12:16 AM, jiggleromp said:

Thank you so much for coming back and for the update.  I am so happy that everyone has been surrounded by hope, love, and joy during what could tear apart so many.

This may be a small thing to bring up, but you mentioned having to hold Merlin down for his needles.  I know the heart wrenching pain that brings, the fear the tears the hurt and betrayal they feel afterwards.  My daughter is like this too.  Could you share how you helped him through it?  The nurses and doctors we have seen don't have any patience when my daughter is in panic mode.  I have come up with certain ways to help her, but her fear is heartbreaking.

Oh sweetheart, you and I both know that it's no small thing in any way, and I'm truly sorry that you and your daughter are experiencing this.  For Merlin it was a matter of needles being associated with the trauma of having 30 emergency staff turn up within minutes, and the shot of adrenaline to his thigh, as he realised through talking, that the needle hadn't really hurt that much.  The Occupational Health Therapist helped a bit by writing and drawing a plan with him to focus on.  There was an amazing Paediatrician who took him through mindfulness exercises and got him onto an app - Smiling Minds - to help him get into a calm space.  We were talking to a Psychologist about using a combination of EMF and Hypnosis.  We had friends who got certain drugs from their Doctors to help them with the panic.  I asked him how he'd be most comfortable with taking the needle, and he sat on my lap and continues to this day to find comfort in that.  Right in the beginning we ( a gorgeous and dapper young Emergency Nurse son of my Clinical Nurse) tried giving him a mask placed far enough away from his head so he could see it, with a Where's Wally colour photocopy inside it, so he didn't have to see what was going on.  Bribes from the start have also been a huge motivation towards getting it done!!  In the first year he really lushed out in requesting all the things he knew had been previously forbidden, like playing on my laptop (that NOBODY touches!), and getting icecreams and fast food.....  But I think the thing that helped him the most, was his love of the Nurses and Doctors and Starlight mob for a start, but also really getting that if he hadn't got that shot of adrenaline, his throat would have closed up and he wouldn't be able to breathe, and that would have been a lot scarier.  In being able to separate the trauma from the needle, it took a lot of the sting out of it, pardon the pun :)  

Hope something in all of that helps, and the very best of luck to you both in your future experiences.

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On 4/28/2018 at 7:21 PM, adidas said:

It’s so great to hear from you and I’m thrilled that everything is going so well. Sending you and your family lots of love!

ps please stick around. 

Keep engaging me in conversation, and I wont be able to help it :)

 

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49 minutes ago, Hellena Post said:

Keep engaging me in conversation, and I wont be able to help it :)

 

So are you still making textiles and soft sculptures?  I really liked some of them.  Honestly.

And I was reminded of you when I was watching Call the Midwife recently.  One of the nuns was knitting boobs in order to teach young mothers how to breastfeed. :D

 

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So glad to see you return Hellena! 

We were friends on Facebook once a long time ago - and I miss seeing your tribe on my feed! Made the move to Brisbane myself about 5 years ago. One of the best things I ever did. I'm thrilled to hear that the kids are doing well with the adjustment to mainstream school. Having done it myself as child, it's a big one, but personally, it opened many doors to me, which have led to me doing what I do now - a diverse range of things from nannying to being an ambassador for a local domestic violence service, and vice-president/publicist for a local historical group that runs a house museum.  It's funny how life works. 

 

Hope that things continue to go from strength to strength for the tribe. Xx thanks for the update. 

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10 hours ago, Palimpsest said:

So are you still making textiles and soft sculptures?  I really liked some of them.  Honestly.

And I was reminded of you when I was watching Call the Midwife recently.  One of the nuns was knitting boobs in order to teach young mothers how to breastfeed. :D

 

Mate, I'm going OFF at the moment!  The main thing that's been keeping me going over this whole thing is Newtons Third Law - or for every action, there is an equal and opposite reaction - and I've found great peace in that concept.  So for every terrifying and awful thing that happens, like Leukaemia, there is an equal and opposite reaction of the amazing hospital folk who saved his life, and all the other incredible people who showed up to support us, and all the fibre art I've been making as my therapy through all this.  As well as moving into a proper-non-hippie house in Queensland, where they have under the house areas as big as the house that are perfect for fibre studios :)  Since we've been up here I've made a three dimensional, three circuit labyrinth, and a huge spiderweb spiral shower with handspun luxury yarn chains that you drape through, and a Willy Pilly (long story...pardon the pun), and a gorgeous yarn bombed stick with a wrap hanging from it and prosthetic wire branches with wool pods and flowers, and I've been going busking with my spinning wheel and just yesterday finished a handspun suri alpaca woven and crocheted poncho.  Seems trauma is great for my making mojo......  I love that you thought of me when you watched a nun knitting boobs!

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7 minutes ago, Hellena Post said:

Since we've been up here I've made a three dimensional, three circuit labyrinth, and a huge spiderweb spiral shower with handspun luxury yarn chains that you drape through, and a Willy Pilly (long story...pardon the pun), and a gorgeous yarn bombed stick with a wrap hanging from it and prosthetic wire branches with wool pods and flowers, and I've been going busking with my spinning wheel and just yesterday finished a handspun suri alpaca woven and crocheted poncho. 

I would so love to see photos of all of that.  So creative!

And Hellena, you are a gem in my eyes.  An unusual gem, and that makes you more valuable.  And a talented gem who so obviously loves her children.

Let no-one ever tell you otherwise.  :group-hug:

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Finally made my way back here and am really enjoying your great updates, Hellena.

I am very glad to hear that the treatment is going well and that you are all thriving as a family. I'm sure that adds to Merlin's ability to cope with everything.

Thanks so much for updating us!   :group-hug:

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Hellena, it's so nice to see you, and I'm so glad to hear that everything for your family is going so smoothly! And may I agree with Palimpsest, you are a joy, so please stick around!

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