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Connor needs life saving treatment in Melbourne

  • Update

      5 October 2024
    Posted by: Lisa Coster
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    Connor has had his cells returned and is handling it rather well except the odd side effects. His eyes are extremely sensitive and seems to have a few memory issues which we have been assured will go away. We have our day 30 tests next week and with that we should find out level of disease and also If the cells are working. Sorry for delay in update unfortunately we have had some family emergencies outside of this to handle.

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  • Melbourne

      3 September 2024
    Posted by: Lisa Coster

    We have made it back to Melbourne where we have another week of chemotherapy leading up to the manufactured cells returning next Tuesday. We had a very sore surgical day yesterday with another central line put in and kidney tests today as they have noted some scaring on kidneys from this disease.Connor is very eager to go out exploring however we are in some form of isolation while all this is happening.(more to add to his living life to the full list) we will remain in melbourne min 30days post car- t

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    • 03/09/2024 by Yvonne

      Aww you are so brave Connor🥰I hope you get to do some exploring.

      My thoughts are with you all ❤️

    • 03/09/2024 by Robby

      Have been looking forward to an update on Conor’s journey. Thank you so much. It all sounds positive but alas so hard on Conor’s body. He is a champion & I’m hoping he does get to explore Melbourne before you have to return home. I’m praying that will happen for him cause he so deserves some happy time as I’m sure you do too. Lots love & best wishes to you both. Robby

  • Bridging chemo

      14 August 2024
    Posted by: Lisa Coster

    We are on week 3 of bridging chemo between Oz trips. Side effects starting to appear with extremely sore joints and energy levels decreasing. Trying to keep winter bugs away as all looking on track for returning to Melbourne in September.

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    • 14/08/2024 by Yvonne

      Go well little man my prayers are with you and your whanau kia kaha ❤️

    • 15/08/2024 by Robby

      So great to read your update on Conor’s journey. He is in my thoughts & prayers daily & I just wish him & your family encouragement and strength on this chemo trip which I know is so hard on his body. With love Robby

    • 16/08/2024 by Eileen & Paul

      You are a brave wee boy Connor, thoughts are with you all x

  • Melbourne

      25 July 2024
    Posted by: Lisa Coster

    Thank you all so very much for your well wishes and donations, we have made it to Melbourne this week for the first part of car t therapy. It's been an extremely long emotional week with many different tests and procedures performed. We will return end of week where we will then start a month of chemo before being able to come back to Melbourne for the remainder of treatment.

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    • 26/07/2024 by Yvonne

      Well done what a big emotional trip for you both and also to the rest of your family who l am very sure are extremely worried but also supported with close friends and extended family. ❤️

    • 27/07/2024 by Robby

      That’s just the best news. Thank you for updating.

      Conor you are in my prayers ever. Wishing you all strength & love in this next journey. Robby

  • One step closer

      10 July 2024
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    Fantastic news for wee Connor and his family today.

    Connor has been given the green light and is approved for funding for his treatment in Melbourne. Connors family are just awaiting the confirmation of dates, and then they will be heading over for his first part of the treatment.

    Thank you all again for your outpouring of generosity to enable Connor to be able to get to Melbourne with his mum and have his treatment. Your kindness will never be forgotten, and means more than words can describe.

    Once dates are confirmed, we will continue to update you all with Connors progress.

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    • 11/07/2024 by Yvonne

      I am so excited to hear this news. Go Connor❤️

    • 11/07/2024 by Anne

      Wonderful news x

  • Connor has received his 2000th bead

      29 June 2024
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    Apologies for the lack of updates on Connor. We have not had any news as to an updated time frame that Connor will be heading to Aus. Connors mum has been in regular contact with the Hospital but unfortunately, even although his treatment has been marked urgent, they still dont have a date. This is understandably incredibly stressful for Connor's mum and dad as Connor needs to have his deasease below a required level to proceed with treatment. The longer time goes on whilst waiting for a treatment date, the riskier it becomes with Connor' current health level continuing.

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  • Thank you from the bottom of our hearts <3

      10 June 2024

    Wow! Thank you all so very much for your out pouring of generosity for Connors treatment. We are utterly speechless and forever grateful for the kindness you have shown wee Connor.

    Connor has been discharge from hospital at the moment and has spent the weekend at home with his family. He has been busy making a small veggie garden with his brother and mum and dad to cheer him up.

    Thank you again, your generosity is so beautiful and incredibly overwhelming

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    • 30/06/2024 by Yvonne

      Our prayers are with you all❤️

  • Three fantastic steps in the right direction

      8 June 2024
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    After a very tense wait on Wednesday evening, a team of specialists have confirmed that Connor is now approved for CAR T therapy pending funding from high health MOH.

    Connors recent bone marrow aspirate showed incredibly low levels of the disease meaning his recent round of chemotherapy has been effective.

    Connors CAR T has been marked as urgent and he will be heading to Melbourne shortly to undergo his approved treatment.

    Thank you all again for those that have shared or donated. If everyone can continue sharing we get Connor even closer to his CAR T therapy goal.

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    • 10/06/2024 by Brian

      CAR-T is probably Connor’s best option, just being accepted is incredible. In some cases the manufacturer will donate their contribution on compassionate grounds.

  • 1966 beads and counting

      25 May 2024
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    Update from Connors mum today

    ☆☆☆☆☆☆☆☆☆☆

    1966 beads at count today with more awaiting us, I remember asking ccf at one stage how many beads at most had they given and at the time she said 1500. Every bead represents anything relating to treatment Eg white is chemo, blue clinic visits, black every time blood was taken or line accessed etc.

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  • Connor has begun his next lot of chemo

      25 May 2024

    Connor has now been admitted at rhe beginning of this week into Christchurch Children's ward to begin more chemo therapy and put in new central lines.

    Connor is having intensive spinal chemo and iv chemo mix to try and keep him eligible for his CAR T therapy. Connor remains in high spirits but obviously is begining to feel the effects of the chemo on his body again.

    Thank you all to the generous donors, please give the page a share too so we can get as much reach as possible for Connor and his family's sake.

    Much love to you Connor and family 🖤

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