Connors new page
30 June 2025
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Connor needs life saving treatment in Melbourne
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An update on Connors Journey
30 June 2025Apologies for the lack of updates around Connor his health and treatments.
Unfortunately Connor is incredibly unwell and is very sadly fighting an impossible journey.
Connors Car T treatment was a success and it has done a fantastic job curbing the disease. This all seemed like a massive positive for Connor and his family, until it appeared something was wrong as he was needing regular transfusions which upon further testing showed as MDS (myeloid displastic syndrome) Connor was in the process of trying to get healthy enough for a bone marrow transplant however, this has sadly taken a horrific turn.
A sample of Connors bone marrow which was harvested over two years ago and retested and shown the mds was present prior to first transplant. Unfortunately there is no cure for treatment related MDS and with time it becomes AML. (Acute myeloid luekemia)
It is with a very heavy heart that all of this means that Connor is not expected to recover from this disease and while Connor is able, we are fundraising for making his final dreams come true so he can make some beautiful memories with his family before it is too late. A new page will be opened for Connor as this page is due to expire.
Thank you on behalf of Connor and Connors family for your generosity.
Lisa
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So heartbreaking to read this; Sending Connor and family strength at this time and all my positive thoughts and wishes for making some beautiful and happy memories together 🙏🏻💙 X
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It is with immense pain that i read your latest update on Connor. I am devastated.
Connor has been constantly in my prayers & over these long months, he has come to feel part of my family too. I am in awe of his incredible bravery & endurance, the depth of love, the devotion & courage you show him each day. Please know I will continue to hold Connor (such a fighter) & his beautiful family in my prayers many times a day. In closing I know that as a family you will all make some precious, very happy & lasting memories together. With so much love Robby
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Update
29 May 2025Posted by: Lisa CosterA very up and down month since started new medicines. Connor has now got another nasty rash deemed as sweet syndrome with an extremely painful welt like rash. Alot of muscle pain when medicine first started which appears to of slowed down a little. Lung appears to of settled however all in all general health is not very good
Low energy low mood nasty cough the most recent. Hoping things settle a bit soon so we can go out and have some fun and start to do some of the things Connor wants to do
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So sorry to read of Connor's continuing struggles. He is a brave little fellow. Do you need further funding for his treatment, if so how is this arranged?
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I have no words except ❤️❤️❤️
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You are a very brave boy Connor. I sincerely wish you the best and hope you can get out and do the things you love soon. I think of you daily.
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Update
12 May 2025Posted by: Lisa CosterWe have started some new medicines and been dealing with alot of pain unsure if it's the medication that's causing it or something else. It appears by an xray there may be some weakening to his spine again due to treatment.Connor has become very sore, very down and quite immobile.
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❤️❤️❤️❤️❤️❤️❤️Unreal what Connor and yous have been and are going through. We send our thoughts and prayers 🙏
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Go well Connor. You are a very brave boy. Sending our love and thoughts to you and your family. XOX
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Week update
28 April 2025Posted by: Lisa CosterConnor has had an extremely rough week being in hospital since Easter Saturday.
Fevers, heart rate of 220 and oxygen being required being part of it. Had quite the scare anzac day with an extreme blood nose that wouldn't stop causing eyes to bleed.
He is getting very down being stuck in a hospital room and is slowly starting to improve.
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Poor baby... we are praying for you Connor xo
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Very pleased Connor is starting to improve…. Poor wee boy. Praying for you Connor.💙
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Yes praying for you all every day ❤️
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Thrilled to hear your making progress Connor & I’m praying you get to go home very very soon. Lots love Robby
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Easter lung update
21 April 2025Posted by: Lisa CosterConnors breathing and general wellness was changing causing worry, upon Connors xray they found that his lung had completely filled up causing it to put pressure on surrounding organs. With oxygen levels dropping and increasing heart rate he will be getting another chest drain of approximately 500ml as they don't want to shock his body by removing it all. Scary times watching monitors and a genuinely unwell boy :(
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Thoughts and prayers are for you and your family Connor
Stay strong 💪 and remain positive although this is difficult after all you've been through
God bless 🙏
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Keep fighting, Connor! x
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A gorgeous and courageous wee man - sending positive thoughts and strength for you Connor and your family
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Keep fighting little man, sending you healing & lots of love. To mum & dad continuing strength & courage as you sit by Connor’s side. You have all been in my prayers for such a long time & I pray Gods presence will wrap around you tonight. Such love winging your way. Robby
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Just heart breaking for you all.❤️❤️❤️❤️❤️❤️
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Weekly update
15 April 2025Posted by: Lisa CosterFevers, increased heart, pain and loads of hospital:( xray has cleared up a bit however doctors are thinking this is all inflammatory response. At this stage transplant is ruled out until we can get him feeling better with no steroids which at this stage isn't happening. Crossing fingers for a miracle
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Wishing you all much strength.
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Hoping and praying for the best outcome.🙏🏻🙏🏻🙏🏻🙏🏻
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🥲🥲 Keep fighting so hard for you all. Much love and prayers 🌹🌹
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God bless you 🙏 Connor
We're praying hard for you
I'm sorry you're suffering so much
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Holding you in prayer Connor. Asking for the best outcome and return to full health for you.
And support from the divine for your mum and family who love you.
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Poor little soul… you are such a strong boy…you keep fighting we keep praying for you…💙💙
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Page extension
9 April 2025This page has been extended with a new closing date of the 9/7/25. A new page will be created for Connor before that date with a link to his new page. Thank you all so very much for the beautiful generosity you have shown Connor and his family through this horrific ordeal.
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Sending love
God bless 🙏 you Connor
My prayers are for you
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Inflammation response
29 March 2025Posted by: Lisa CosterThis week's curveball threw us a rash covering whole body and some fevers, the docs have put it down to a inflammatory response to what they think to be from the MDS. Connors getting quite despondent while in the hospital just wants to be out. New medicine has been started in hopes to settle it all down so we can focus on getting him ready for potentially another transplant
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So sorry to hear the nightmare of a time you all have been having. Sending love for the long, unbelievably tough days xx hoping Connor gets to taste the fresh air and sun on his face again soon xx
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❤️❤️❤️❤️❤️🥲❤️❤️❤️❤️☹️
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Poor wee boy. We are all wishing you medical success. Thinking of you and your family every day. Praying for to gain strength to keep fighting.💙💙
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Bless you Connor
My prayers are for you
You are strong and a fighter
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Fluid around lung
21 March 2025Posted by: Lisa CosterWhile starting all the transplant tests it was picked up on a echo (heart test) that Connors chest sounds weren't quite right. After a xray it appeared Connor had 2/3 of his lung covered by fluid between lung and chest wall. Cause unknown however a drain was run the next day where they pulled out 900ml of fluid. It doesn't seem to be refilling at this stage however until this clears itself completely other treatments etc isn't an option. Still awaiting other test results to determine exact details 😞
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I’m so glad his lung isn’t refilling, and that it clears quickly. Connor is always in my thoughts as are you all. Much love, Rosina and whanau.
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All the best Connor
We are praying for you
Stay strong
God bless you 🙏
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Let’s hope that the Doctors can get this sorted for yous. ❤️
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Another heartbreak
7 March 2025Posted by: Lisa CosterConnor has been back in hospital now for over 2 weeks with fevers and miserable. It appears not only were the car t cells to active but it appears he has MDS (myelodisplastic syndrome) which inevitably will turn into AML (acute myeloid leukemia) caused by the previous treatment he has endured.
We have been told Connors odds are very grim with a 10% chance cure can be reached.
The doctors are doing all there research and depending on further testing Connors eligibility for another bone marrow transplant is to be explored, which is deemed extremely high risk due to all his previous treatments
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This rollercoaster must be exhausting for you all, and terribly heartbreaking. Can some of the raised funds be used to spoil Connor in some way? Is he well enough to leave the hospital? I'd be happy to donate more if there was something nice for Connor they could be used for.
Best wishes.
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OMG I am so so sorry❤️❤️My heart breaks for you all. Dont give up Connor❤️
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We are able to get out and little during the day if he has the energy, we have been working on a dreamlist for all the things he would like to do and slowly get to tick them off. Connor turns 8 on the 20th of this month so trying to get some kind of excitement for that.
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I'm praying with all my heart that your beautiful boy beats the odds, if anyone deserves a chance it's Conner.
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I’m so sorry to hear this news. He’s been so so brave throughout. Praying for a miracle!
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Poor little soul. He has fought so hard. Stay strong little man.
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Admission
20 February 2025Posted by: Lisa CosterConnor was admitted to hospital on Friday with high fevers still has not calmed down.
They have performed loads of tests CT Xray bone marrow aspirate bloods etc and found nothing. Inflammation markers have increased with no real answers why. They suspect it's a reaction of Car T. No answers, miserable boy not having a great time of it.
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Aww you have been through alot Connor my prayers are with you ❤️❤️
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Car t side effects
27 January 2025Posted by: Lisa CosterSeems now the docs are saying Connor has ICAHT a side effect Car-t. This particular side effect basically means the car cells are working great but stopping other cells from working as well causing low blood levels, requiring weekly blood transfusions. Terrifying time as low platelets are extremely dangerous with the risk of internal bleeding.
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Praying for this nightmare of yours to end. Fighting hard Connor you brave little hero ❤️❤️
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Update
15 January 2025Posted by: Lisa CosterConnors blood counts are getting knocked around alot making him need weekly blood transfusions as they are getting low. No body seems to know why, all his car t tests are coming back great with no sign of disease and no bcells. Another wave to ride. Connor will not let it get him down
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Aww Connor praying for you as always ❤️
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Results
18 November 2024Posted by: Lisa CosterDay 60 test results are back!! Awesome!!no sign of disease and no active BCells exactly what we want!!! More tests at day 100. Watch this space
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So Awesome Go Connor you little tough guy🥰
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Great result Connor. Such great news.
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Way to go champion. Awesome results. Lots loving prayers wing your way daily. Wishing continued strength to mum & dad. Lot love to you all Robby
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Day 60 tests upcoming
6 November 2024Posted by: Lisa CosterNext week we have our day 60 tests including bloods, bone marrow test and a monthly infusion to help immune system. Since coming back Connors bloods have been dropping significantly and has managed to pick up some community bugs. He has had a few very down weeks but started to pick up. Today we have been threading up some beads and we are now at 2226 and counting. Fingers and toes crossed for some awesome results next week :) please put out those positive vibes
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Stay strong little man … you can conquer this. You have been so brave. Sending you all the love and blessings. Look forward to hearing some great results next week.
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Fingers and toes positive vibes and prayers coming from me and my whanau ❤️
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Test results
13 October 2024Posted by: Lisa CosterConnor has completed his day 30 tests and has been given the all clear!! No sign of disease and active Car-t cells (what they need). Connor will have monthly bone marrow tests for first 3 months and weekly blood tests then the testing will decrease the frequency. Connor will be able to slowly but steady be able to start enjoying being a kid!!
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I'm so happy for you Connor. This is the best news ever!
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I am so estatic for you all go Connor enjoy life❤️
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That’s simply the best news ever to hear. Absolutely awesome that Connor can start to now have the fun life he so deserves and as a family you can now relax & all enjoy time together without constant worry. God does answer prayer. With love & every best wish. Robby
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This is the greatest news for you and your family. Go forward with strength Connor…. this the best news ever!!!
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Thank you for the updates, it is incredibly generous of the family to do this, hope the whole family can now return to some sort of normalcy and that Connor goes from strength to strength. What amazing resilience you all have. ❤️
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Update
5 October 2024Posted by: Lisa CosterConnor 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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No need to be sorry you have a lot to deal with. Onwards and upwards Connor. My thoughts and prayers are with you all ❤️
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What a wee champion you are Connor. You’re just doing so well. Every best wish & prayers for a great results next week.
Cheers Robby
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Melbourne
3 September 2024Posted by: Lisa CosterWe 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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Aww you are so brave Connor🥰I hope you get to do some exploring.
My thoughts are with you all ❤️
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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
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Bridging chemo
14 August 2024Posted by: Lisa CosterWe 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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Go well little man my prayers are with you and your whanau kia kaha ❤️
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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
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You are a brave wee boy Connor, thoughts are with you all x
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Melbourne
25 July 2024Posted by: Lisa CosterThank 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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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. ❤️
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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
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One step closer
10 July 2024Fantastic 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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I am so excited to hear this news. Go Connor❤️
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Wonderful news x
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Connor has received his 2000th bead
29 June 2024Apologies 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 2024Wow! 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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Our prayers are with you all❤️
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Three fantastic steps in the right direction
8 June 2024After 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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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.
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1966 beads and counting
25 May 2024Update 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 2024Connor 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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