Archie’s Terminal AML Leukaemia Relapse

Update: 4/6/24

On May 29th, 65 days post allogenic bone marrow transplant (donor cells from his sister,) we were told Archie had relapsed again, for the second time with AML. They detected very early blasts (0.136) in his bone marrow. To say we were devastated is an understatement. We were told to immediately cease his immunosuppressive drug (Cyclosporine) with the hopeful outcome that alani’s cells which now take up Archie’s bone marrow, would induce a graft vs leukemia effect and basically find all those AML flags on Archie’s cells and get rid of them. It can be possible but unlikely to get rid of everything.

We won’t know if that’s had any effect until next Tuesday when he has another bone marrow aspirate and then we wait up to 2 days for results.

Anyone that understands AML, knows that relapsing, especially a second time, has an extremely poor prognosis and high mortality rate. This means weeks to months with our Archie, which is absolutely incomprehensible. How could we have gone through all of this to lose him now? No parent should ever have to face this reality.

He is only 4 months shy of his 2nd birthday (20 months)

There are basically no other treatment options for Archie via the hospital.

we were offered a donor lymphocyte infusion, however, this would require Alani to have to go into hospital as in inpatient for a few days, have a Vas-Cath inserted into her neck and lay still for 4-6 hours or possibly go under GA.

There are also risks to Alani as well. The likelihood of this working is 10-20%. If it doesn’t work, he is at high risk for GVHD & can die throughout the DLI or after.

Alex and I being the people we are, (very stubborn and tenacious) will not give up.

We will fight for our little boy until we can’t anymore, despite the struggles we’ve had getting through the last 16 months of this nightmare. Trying to juggle life in general, pay bills, raise 2 kids, run a business, and still come out normal people at the end of it all, seems near impossible.

After many discussions, we have decided to go down the road of integrative therapies/medicine. We have entrusted for a long time now, Archie’s naturopath (who is also a scientist/medical doctor and oncologist) with her advice on Archie and his best move forward.

we are realistic people and are aware of the odds of all of this working, but even though small, there is a chance.

we have his on multiple supplements twice daily, this includes:

cumin/black seed oil, curcumin, vitamin d, vitamin e, fish oil, cranberry, vitamin a, sulfurophane, allicin (garlic) magnesium and more. We have him on all practitioner grade supplements which are very expensive.

We have also started hyperbaric oxygen therapy (HBOT) - hard chamber.

A basic understanding of it - the chamber pumps 100% oxygen into your cells/marrow & helps the body produce new cells.

The closest center to us is on the Gold Coast which is an hours drive, so Alex will be taking him every day for the next month, as this is what has been recommended to us for where Archie is at - stage 4 (terminal) cancer..

The cost of the sessions is $250 per hour. Because of how aggressive and rapid Archie’s cancer has progressed in a short time, it has been recommended to us to do it everyday for a month as a type of salvage therapy.

It’s definitely not cheap, but the risk vs benefit is obvious to us and we would do anything to help preserve his longevity.

Archie hasn’t even learnt to walk yet as he’s still suffering from the nerve injury he sustained in hospital when he had his lp treatment.

As you can imagine, all of the above costs add up to thousands per month, (the hyperbaric being $3000 alone with 2 hourly sessions almost everyday) we will do anything for Archie, he deserves every chance at happiness and has been fighting for a way out of this since he was 5 months old.

thank you for all your continued support, loving words, prayers and thoughts and monetary donations. None of it goes unnoticed, it is heartwarming to see the army Archie has behind him and we can see how loved he is.

Update 26/1/24:

Having a few days at home (hoping Archie doesn’t require hospital admission prior to Monday) Monday morning Archie is having surgery to have a central line put in to administer chemo, Tuesday is his first lumber puncture and chemo into his central nervous system as the leukemia would most likely be in that space. Hoping to achieve remission with 2 cycles of chemo before preparing for a bone marrow transplant. Looking at 3-5 months in hospital.

Frustratingly, he’s so happy and himself at home you wouldn’t even think he’s sick. Thank you to all for your words of support, messages and donations. We are shells of ourselves these days and trying to keep it together, you are all rallying behind us and we can’t thank you enough.

Updated 25/1/24:

we received the devastating news today that our 15 month old has refractory AML, meaning it has relapsed after only 6 months of remission. He had a bone marrow aspirate today that confirmed he has an heavy leukemia burden in his bone marrow (similar to the first time) and when they look under tue microscope, the same mutation. We are beyond our grief stricken selves, barely having time to return to normalcy as we’ve been in and out of hospital with recurrent utis (4 in 6 months) due to the nerve damage in his leg which is causing bladder issues. It’s relentless, exhausting & Alex and I are shells of ourselves on complete autopilot trying to raise our family and spend so much time apart. Our only hope is 2 cycles of chemotherapy (4-6 weeks each cycle) and best case, archie goes into remission. Then he will be prepared for a bone marrow transplant from his 4 year old sister, Alani. For those of you that don’t know, archie has a big sister and big brother, Aden. We all got tested to be a match early on in Archie’s first cycle of chemotherapy back in April 2023. None of us were a match expect for our beautiful Alani. She will give Archie the best chance at survival long term but still, archie has a 40-50% chance even after his bmt. If you would like to donate, we will be forever grateful however we are more than happy for you to send positive thoughts and energy our way for our little Archie, who deserves every chance at a normal life and the luxury of growing up which alot of kids with cancer never get.

21/3/23:

Our little boy, Archie, is 5.5 months old and has completed our family in October last year when he was born. He is a happy, beautiful boy, with a warm and friendly persona and lights up every room with his big smile.

Archie become sick a couple of weeks ago with what we thought was RSV symptoms, however after spending a night in ED & having his bloods done we quickly discovered that Archie had psuedomonas sepsis infection & has a rare form of AML blood cancer.

upon discovering this, dealing with the shock & extreme stress of his diagnosis, within hours, Archie was fighting for his life in ICU as the leukaemia took over his little body. Thankfully, with the quick thinking of ICU and his oncologist, they saved him with a 1/3 transfer of donor blood and then by administering chemo. He has been on life support, dialysis & many medications for days so far.

He is continuing his chemotherapy journey for the upcoming months and so far responding well, he’s a little fighter & he deserves every chance possible for remission as he’s only just started his life. It’s totally unfair & every day is another day he is soldiering on & surviving this horrible disease. Archie also has leukaemia in his CSF (fluid around the brain & spine) so we are hoping chemo will help him into remission. Please help us create a little trust fund for Archie for his future, the money will go towards him entirely (whether it’s future treatments, medications or just for some beautiful things for his bedroom at the hospital)

I will be in hospital with him for many months to come assisting his journey & hopeful remission, and having to unfortunately miss my time right now with our other two children so I can be here for Archie’s every need. Please have us in your thoughts & if you can contribute for Archie, we would be eternally grateful.