This 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.
This 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
While 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 😞
Connor 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
Connor 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.
Seems 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.
Connors 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
Day 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
Next 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
Connor 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!!
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.
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
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.
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.
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.
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.
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
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.
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.
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 🖤
