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Ella's Journey

  • What a year!

      30 December 2014

    Hi everyone, MERRY CHRISTMAS!

    I can't believe how much has happened since the last update and apologies for not posting here. Always try to keep Ella's Journey Facebook page updated, so hopefully most of you will have been reading that to see where we are up to!

    Ella got her first (not perfect leg) the day before we flew to the UK for her big sisters wedding at the end of July. It has been lengthened 3 times since as she has been growing sooooo much since chemo finished. In fact after the Christmas break Matthias is going to start her 2nd leg! We are also commissioning her beach/swim leg as she desperately needs it- he has been putting us off having it built whilst Ella is growing so fast, but we feel so sorry for her when she has to hop everywhere, especially difficult when at pools like Hanmer and Jellie Park when she goes down the water slides but then has to hop back to the stairs, crawl up them to slide down again( never once complains though because she's having a blast!)

    Once her growth spurt eases up a bit we will start looking at getting her running leg, which you have also donated towards. It's a balance between not wasting your precious money, but giving Ella a good quality of life.

    Hope you like all the new photos, from her last chemo session, flying 10 days later to the UK for Claire's wedding, 11th birthday NOT spent in hospital on chemo, Christmas this year NOT ending up in hospital, back to school for a very excited Ella in Sept, swimming 2-3 times a week and just having lots of FUN!!!

    First CT chest and leg X-rays since chemo finished were all clear. Next ones are due on 19th Jan, then 3monthly for 2 yrs, 6monthly for further 3yrs.

    This Givealittle page closes on the 14th Feb, we cannot believe how much has been raised, from NZ and the U.K. It will keep a supply of special legs going for a good while, which we are so thankful for. You are amazing, special, generous people to think of Ella.

    Wishing you all a happy, healthy 2015.

    Love from the Benn family

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  • Update for 13/06/2014

      13 June 2014

    Ella went for her first limb fitting yesterday. Several alterations and Ella and Matthias were happy with alterations on prototype. Five mins spare, silly thing to mention to Ella -""bars"" she said! Matthias told her she would be able to take a couple of steps!! After this we went straight to the hospital as Ella had a theatre slot to drain a wound abscess that was quite painful. Home today though, hopefully her wound will now heal properly. Back for next chemo week this Monday, after a trip to Burwood to try on her proper leg which should be ready. Exciting times!

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  • Update for 07/04/2014

      7 April 2014

    Hi everyone, time for an update! Itfs been 9 weeks since Ellafs surgery and she has done amazingly well, despite a small area of her wound that needed a bit of plastic surgery to sort it out! Chemo restarted 3 weeks after surgery so she lost the little bit of hair regrowth she had which was a shame, but at least we know itfll come back again-was dark instead of her normal dark blond! She didnft get the kill rate on the tumour we had hoped for but after big discussions amongst the Oncologists here and in Auckland, the decision was made for Ella to have the 18 week course. This means we get to her big sisterfs wedding in the UK after all, and meet her new Niece!! We have also just found out that Virgin Australia arenft going to charge us for changing the flights as a gesture of good will-great news. Ella has an MRI tomorrow then hopefully we will meet with her Surgeon who will ok her to be fitted for her prosthetic limb at the end of the month (that will be 3 months post op). As you can imagine she is now starting to get very excited about this-in fact she is now walking about on Anee (name for her new leg ANkle knEE ). She was also using Anee to climb up her climbing frame the other day and is attempting cartwheels! Life still has its ups and downs, but we take our lead from Ella, and she is very positive about her situation. Next post will hopefully be a video of Ella taking her first steps- watch this space and thank you for all your wonderful fundraising/donations. xx

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  • Update for 13/02/2014

      13 February 2014

    Hi all you very generous people, thought we should give a little update on Ella. Surgery went very well on the 23rd Jan. Her surgeon collected a colleague(from Auckland) from Christchurch airport at 7.30am. Went down to theatre at 8.15, had an update at 2.45pm from her lovely anaesthetist that all was progressing well, then finally a call from her surgeons at 5.30 to say they had just finished, and would be waking her up. First thing Ella wanted to do was look at her new leg! Took it very well. 4 days later and she was moved out of HDU, then over a few days had the epidural removed and started getting in a chair. 11 days post op and was allowed to go home (had had 2 visits home at the weekend which went well). Wonderful day for us all. Ella is continuing to progress well, some minor hiccups with an area of wound slow to heal, but has already restarted chemo at the beginning of this week, less than 3 weeks after surgery! Hates having to go into the Cancer unit (CHOC) but understands this is the only way we can go. She is an 'outdoor child' so being cooped up is really hard for her. We have been amazed at the response to the givealittle page, all the donations and messages are very much appreciated, and this is giving us energy to keep strong. THANKYOU XX

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  • Update for 23/01/2014

      23 January 2014

    Thinking and praying for not only Ella today but Andy and Sandi. Today is such a huge day and life changing for all of them. They are all very brave and inspirational. Thanks everyone for your support, please take some time today to think of Ella, her surgery is expected to take around 8 hours.

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