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Help Trey's family as they grieve the loss of their beautiful boy

  • The End of this Journey

      5 April 2023
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    Thank you to everyone for their continued support through this difficult journey.  It is with great sadness that the family share that Trey passed away early Tuesday morning before he could have his second bone marrow transplant.

    Our thoughts are with Belinda, Shayla, Lucky and Ang and family and friends during this time.

    Trey was a beautiful person with a huge capacity for love.  He fought bravely right through to the end with his amazing mum and family right by his side.

    Trey will be farewelled tomorrow by family and friends.

    At the moment, the best way we can support the family is through funds to help with funeral costs.  With Belinda unable to work the last wee while, there have been a number of financial strains.  This is one way we can help ease the burden and allow time to grieve without the additional financial stress.

    Thank you again for your love and support.

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  • Operation Update

      25 March 2023
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    The operation lasted 7 hours, they removed his entire right lung. It went very well unexpectedly. He is now in icu. He was doing well yesterday morning. They took breathing tube out and it went downhill , his body was building up co2. They reintubated him. He had heart rate of up to150bpm and temps up to 41.7. Blood pressure dangerously low. And I mean wow. He's attached to and receiving up to 11 different medicines via pumps and ivs. They have sedated him more and put a cooling blanket to lower his temp, today they will see how his body reacts to slowly reducing the cooling and muscle relaxant so he can breathe more on his own again. Drs have told him to behave today and it's just a rest day to recover from yesterday. He has been stable overnight and his obs are looking all good currently. And that's how it's going to stay. He does stir and he did try to wake up alot yesterday but it was a bit premature. Maybe tomorrow. He's ok. We are all tired but ok. X

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  • A big week ahead

      18 March 2023
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    2.

    A big week ahead, HUGE, a lot going on behind the scenes. Monday-kidney function testing, Tuesday- ct scan, Wednesday-day out, not sure yet what we are doing, and Thursday- operation day. Not like any other, this one is huge. One step, one day, one hour, one breath at a time.

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  • More surgery and preparation for the second transplant

      18 March 2023
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    The Dr has met with the surgeon. She talked to us and Trey about what the plan is, all going well, he is going into surgery next week. They will be looking at removing the main lump of the fungal infection, which most likely will be the top 2 lobes of his lung and possibly the entire lung may need to come out. He also has to be strong enough, hes holding onto alot of fluid in his body still so the Dr is sorting an echocardiogram again to check and make sure his heart is working as it should. After surgery -all going well- he would spend a week in picu. Then the Dr will be looking at starting his conditioning, his chemo, for a week then transplanting cells a week after that. As long as Trey's body can handle it.

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  • The Good and the Bad

      14 February 2023
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    Trey had an xray today, dr said the fungal infection looks the same as last week's xray. Good and not so good.

    Good- it's an aggressive hard to treat fungus that eats away at the tissue and vessels. If it's stopped growing that's good. It will take time, we are hoping to see it reduced on the ct scan next week.

    Not so good- it hasn't shrunk (yet) despite the bucket tonnes of meds this boy is on, they are keeping an eye on his overall functions as these meds can be hard on the organs.

    So really we are still in limbo atm. He has good days where we play games, eat and watch TV and some days he sleeps. Temps are getting fewer and o2 requirements are getting slightly better, any positive sign is vital. He's struggling to eat so may get a ng tube soon. Thanks for all the check ins and messages. Hoping i have good news to share soon. Please send love and healing to this precious boy, he deserves a long, happy, healthy life Xx

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  • Waiting Game & Rest

      8 February 2023
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    Rest day. Meeting with doctors today. They going to add some more antifungal medicines. They discussed the risks ahead. Unfortunately the transplant can't go ahead until Trey is well enough. Please send as many positive thoughts as possible to Trey and Belinda so he can get well enough to undergo the second transplant and begin his journey back to full health. Thank you to everyone for their support.

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  • Scariest tightrope of our lives

      5 February 2023
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    After every other hurdle Tremayne has overcome, starting with 2 viruses before christmas, covid, a blood infection and Pneumonia he is now battling a fungal lung infection. He has had a chunk removed in the hope it will make it easier for the antifungal to kill it off, but drs have said it is an aggressive type of mould that is found in the air, it is harmless to the rest of us but not for trey. He is on enormous amounts of antifungal medicine as well as an array of other antibiotics, electrolytes, and blood products. He is also on meds trying to stimulate white cells to try and fight the infection, no idea if that will help yet. The dr is wanting to start chemo asap to do the transplant all within the next 2 wks, the chemo makes it more dangerous as he is even more vulnerable, but is necessary to get the new cells in. They take 10 days to work once in. He will be on meds to keep fungus under control during this time 🤞. This is the scariest tightrope walk of our lives. Please send Trey strength and healing. We need him to get through this.

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  • Covid has struck!

      4 January 2023

    We came back to Tauranga Hospital boxing day morning, Trey was feeling really off, so got here as quick as we could. A rat test confirmed he had Covid on top of his other virus. Put in covid isolation, and over the next few days (9 or so), he was given iv antibiotics, topped up platelets and hemoglobins. I got it a couple days later and was no help for 3 days at all. A big spike on temp a cpl nights ago meant they changed his meds and did a ct scan to look for any fungal infections. A scary time, looking forward to getting past this hurdle soon and getting back on track for the next part. Chats with starship now everyone is back to work and we will probably head up soon as he tests negative.

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  • Hunt for a new donor

      3 January 2023

    Unfortunately the first transplant has not been successful. This means Trey will need a new donor and to start the process again. He is currently in hospital for transfusions and platelets. This means at least another 6 months up in Starship.

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  • Day 70 Something

      28 August 2022

    Day 70 something...Well, we have been told a bone marrow transplant is a rollercoaster ride. We were making steady, if not great progress for a while. But life is like a cha cha, 2 steps forward, 1 step back. He was just weaned off his prednisone for the graft vs host, and was up getting some antifungal iv meds, then all of a sudden a rash appeared and they thought it was a reaction, but it was gvh again. So upped his steroids for a bit, that didn't help much so they upped them again, which has had the desired effect (eventually). Gradually weaning them down again now as they are really bad for you if you stay on them too long. With the other meds combined its giving him high blood pressure and so of course hes not feeling well. So for the next few days hes on BP pills to regulate that. Continuing weaning the steroids and the hickman line should be removed week after next. THEN, he might be allowed home for a weekend. Its really starting to take a toll on the poor kid, who is missing the puppies like crazy. BUT, this is all part of it unfortunately. It is not a straightforward thing and is different for everybody. We just have to ride it out till the donor cells start playing nicely with him, the rash goes away, steroids stopped and then home. Who knows when that will be. He is doing well overall, just have to be patient and positive xx

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  • Quick update

      16 August 2022

    Well that's clinic done and dusted till Thursday. We have to up the steroids for a few days to quieten down the graft vs host reaction that's flared up, and see how he is on Thursday. Its all part of it, to an extent, the new cells recognising Trey as a different person so are attacking him, the meds he's on and steroids help to calm them down, and hopefully, usually over time, will calm down altogether. Doc did mention we may be up here a lil longer than we thought, only because we were doing so well, it was looking like we could get home early. It can change at any time though. Well deserved subway after that!

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  • 49 Days!!

      29 July 2022
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    Day 49 today. Treys been feeling a bit under the weather, its been good to get out just a little, but he has had sore feet and hands, so not doing too much. Doc has put him on a short course of steroids to help get his GVH rash under control as it flared up over the last couple of days. It should quieten it down just and lil and hopefully Trey will start to feel better. Hes started doing a lil school work when hes up to it, which is exciting.Might get another puzzle today. good news his platelets and nutraphils were up. Its a tightrope walk this thing.

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  • 1 Week in Ronald McDonald house

      18 July 2022

    Today marks 1 week we have been in Ronald mcdonald house. Day +38 post transplant. Hospital appointments are Mondays and Thursdays all going well. This morning his platelets and nutraphils were up so he needed no gcsf or blood products. His blood pressure was a lil high but ok, so we walked to the dairy and now back at the house relaxing. Just have to keep up with steroid cream for now to help keep gvh rash at bay. Awaiting blood test results to check donor cells in a wk or 2. We want to see 100% donors cells. We are pretty much on a pregnancy diet, no cold meat, pre made salads, sushi etc.

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  • Day +14

      24 June 2022

    Day +14.

    It has been 2 whole weeks since the transplant! While the effects of the chemo have taken a long time, they are in full swing now. He still has his hair, he's been too unwell to cut it yet, but is falling out everywhere. The ulcers are in his throat and mouth are at their worst I would say, so painkillers have been upped. The oxy is on a continuous flow and might be getting some ketamine scripted today. This hopefully only lasts a couple of days, as his counts should start coming up soon. Can't wait to feed him up when he can eat again! Just giving him lots of love n hugs for now.

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  • Transplant Day

      10 June 2022
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    The transplant has been done. It took about 15 minutes. He is resting now, and they are keeping a close eye on him. So far so good.

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  • Chemo is finished!

      9 June 2022
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    All chemo has finished now! Yesterday was his worst day yet, overwhelming nausea made him sleep mostly. The Dr came to visit and he perked up just a lil. Rest day today and transplant day tomorrow. Excited but nervous.

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  • Chemo & Preparing for the transplant

      7 June 2022
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    We are on day -3 today, start of the chemo week starts at day -7, so we are 4 days in. Day 0 is the day he gets his bone marrow transplant. Trey has had 3 different types of chemo so far and is starting new meds to help the new marrow become friends with his body. Friday is day of transplant, which just looks like a blood transfusion. it will mean his immune systems levels will be 0. all of his bone marrow wiped out ready for the new. He will be especially vulnerable while the marrow slowly grows and develops, his hair has just started to fall out, that may take a while, and he has rashes. He will get mouth ulcers, possibly all the way down his throat to his stomach. He has an ng tube for when he can't eat, so food goes directly to his stomach, even though it's uncomfortable, its very necessary to keep his weight and nutrition up. He may need transfusions to keep his blood clotting and red blood cells still good. This can last a week or 3 or more. He's also on prophylactics, meds to prevent infections. He experiences nausea, loss of appetite and sadness when feeling bad, usually in the afternoons when hes getting tired. hugs and naps are needed. In the mornings mostly, he is better, we get him up for a shower, some eating and gaming. He will be monitored long term to make sure his body doesn't reject the marrow or it doesn't attack his body. One day at a time is our focus, and also what we will do once this is all behind us. So far on the list is a trip up the sky tower and another trip to the zoo! Secretly we worry, side effects short and long term, ranging from headaches to seizures to cancer. Every cheeky remark, laugh and joke is music to our ears. For now we focus on assassins creed and what's for dinner. xx

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  • Day 1!

      1 June 2022
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    1st day of appointments done yesterday, ct scan, lung function testing, iv line in. Back up at 8am today,ready for another big day. Hickman line in, iv line out and ng tube to go in today. We are 1 day down. However many to go.

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  • Last day at home for a bit

      30 May 2022
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    Our last day home today, tomorrow we set off on our long journey. Will be up in Auckland for a ct scan and specialist appointment tomorrow afternoon, hickman line insertion Wednesday, as it wasn't done last week, and chemo may start as soon as this Thursday for 1 week. Bone marrow transfer will be after that. They are still deciding whether to use the donor, as the match wasn't as good as they hoped. Will find out today or tomorrow I guess. If not, then big sis is back up as his 50% match donor.

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  • Up to Starship

      23 May 2022

    We are off tomorrow to starship, for ultrasound and endoscopy to check the blood vessels by his stomach to make sure they are all ok. Some are enlarged or having pressure put on them by the enlarged spleen. Will find out more tomorrow. Wednesday his hickman line goes in, ready to administer chemo,(next week) medications and also draw blood from. Thursday specialist appt then home till the following monday/Tuesday.

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  • We are getting closer!

      14 May 2022

    Quick chat with starship last night. We are heading up Tuesday, he gets his hickman line in Wednesday, should be back home Thursday afternoon. Then back up following Monday or Tuesday for it all to begin!

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  • Bone Marrow Harvesting is Complete!

      11 May 2022

    Update from Belinda: 3am in Turkey this morning: the surgery/bone marrow harvest went well. Big butterflies now as await appointment dates. Eek. Last day at work today too for who knows how long altho haven't been here much lately. Has been strange not working, but this next few months need 100% focus and attention.

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