Tasman's Leukaemia Journey

Tasman's Leukaemia Journey Updates on local Port Augusta family, the Gills, as they navigate through Tasmans Leukaemia diagnosis. Run by Tarsha Gill

22/05/2026

Today is a strange day. Today marks 12 months since Tasmans official B-ALL diagnosis. However instead of this week being filled with overwhelming amounts of information, tests, surgeries, medications and being told that we cannot return home and that Tasman will have to stay in Adelaide for the next 10-12 months we are getting ourselves ready for his first Monthly Maintenance review.

So far he has managed well and hopefully once his results come back next week we will have an all clear to return home. Whilst this is amazing we will still have to navigate regular trips back to adelaide every 28days along with other trips for other health related appointments along with all the adjustments of being at home and settling back into life being kinda normal-ish again.

This review appointment will make for a huge day. Tasman will be more than excited to return home as will we all be to be together at home once more.

These coming days hold a different weight this year yet still provide us with challenges to face and navigate moving forward albeit slightly lighter ones.

Today marks the beginning of Tasmans next block also known as Maintenance. We have only waited 11 months to reach this s...
30/04/2026

Today marks the beginning of Tasmans next block also known as Maintenance. We have only waited 11 months to reach this stage and we couldn't be more excited it's here. This one will go in 12 week cycles for the next year. During this time Tasman will be on daily chemo at home with some of it being weekly and other parts coming around at 12wks. This means we have appointments monthly in Adelaide instead of needing to be in every 7 or 10 days. Whilst this sounds great it isn't without struggles especially around Port access and Blood tests of which Tasman already isn't a fan of in any way. Being they're now further apart it will likely only increase the Fight within our little soldier to refuse them. A challenge we accept and will tackle in any way it needs be dealt with to help him manage his fears. Tasman has been given some wonderful books for us to read to him to help around some of these areas.

Today we also gained some clarity around how soon we could be getting the greenlight to return home to Port Augusta however no date is 100% set in stone yet as there's still some other things to work through first.
Tasman is more than ready to return home to 'The Orange House' and we have all Tasmans normal life things put in place ready for our return home. He's keen to get home to see his favourite people, be in his own house and room again, to get to kindy and just get back to what feels normal. His energy as always is through the roof and he's very much his normal self and we're aiming to keep it that way for the next year as much as we possibly can.
This Block is aiming to keep his cells in remission long enough so that any cells that might be hiding give up their efforts in mutating others to try to re-form their deadly alliance, whilst also keeping other things within a normal enough ranges should he get sick his body is able to fight it well enough to remain out of hospital. Relapse is very real possibility during maintenance however as always we remain hopeful it wont be something we need worry over and are remaining very realistic in the fact it's still something that's part of the process for some children.

We are very determined to be able to return home before his 4th Birthday so he can Celebrate it this year at home with those he loves and those whom love him too. All going well this is a lilely outcome.

All in all we have been busy spending time with family and friends and enjoying life as much as possible around the bits that aren't always so fun. We are grateful for all the joy we've been able to experience around all the blandness that is Chemotherapy.

Today has been a hell of a day... Let the countdown begin!

A month sure has flown by since the start of this block of Chemo for Tasman. He has fully recovered from his Mucositis a...
24/03/2026

A month sure has flown by since the start of this block of Chemo for Tasman.

He has fully recovered from his Mucositis and we were discharged after a week in hospital. We cannot fault the team for all their help because they really are incredible. It was not an easy thing to have to witness Tasman go through.
Unfortunately with mucositis we had to wait until he was fully healed before continuing on with more chemo so this Delayed our next clinic day by a week. Silver linings though as it pushed the dates out to more manageable ones around all of the public holidays.

Since then we have spent the long weekend together as a family enjoying our first fringe show ever together, we've had visits from lots of family members, visited Friends and had friends visit us, explored new playgrounds, Stood in line for an hour to Vote then finally got ourselves a sausage, we've even attended another fringe show courtesy of the Childhood Cancer association.

As with all things there is a balance. For all the good we've had we've also had some extra unexpected and rather undesirable things happen too that weren't medically related back home. There's been some tough school days, hard days at clinic, all out meltdowns and many tears for us all just to name a few, because the reality of our life is still quite tough for us all at the moment.

Since recovering from mucositis Tasman has had 2 days of chemo. One of those was at a reduced dose of only 80% of what he had when he reacted with mucositis and the other just this friday where they increased his dose.
Never have there been more nerves about his clinic days in any block as there are at the moment due to seeing him react in such an awful way. However i am grateful that after both of these doses he's responded to them really well. I can only hope that he will continue this way and he won't have to go through such pain again. He still has 2 more days of chemo to go in this block before we get to have a look at what comes next for him and for us.

It's all creeping up so fast yet at the same time feels like it's dragging on.
We have so much to try and navigate in such a short period of time though I'm sure we will find our way through it all the same.

As always your love and support doesn't go unnoticed and we're truly grateful to have you by our side while we're on this journey.

Much love
The Gills

Interim maintenance 2 has begun. Meaning we're one block closer to getting our man home to the 'Orange house'. As exciti...
25/02/2026

Interim maintenance 2 has begun. Meaning we're one block closer to getting our man home to the 'Orange house'.

As exciting as that might be for so many reasons we're not off to a great start in week 1. Coming off the back of such a rough round with Delayed Intensification and Tasman being so sick for majority of it and only barely 3 weeks between the Delayed Intensification blocks end and this one beginning his little body has not tollerated his chemo nearly as well as we had hoped this first week.

Unfortunately Tasman has Mucositis.
Mucositis is a painful inflammation and ulceration of mucous membranes, most commonly in the mouth (oral mucositis) or gastrointestinal tract. It is a common side effect of one of his Chemo drugs within this round. Its incredibly painful for our little guy his lips are ulcered, cracked and bleeding. He cannot swallow properly nor is there much eating or drinking currently happening.

Due to this we made a trip to the ED yesterday afternoon followed up with admission onto the Michael Rice Ward for IV pain management and fluids.
Naturally being pained as he is he doesnt want anyone near his face making it hard to administer any form of help in keeping the lips covered with lanolin or any form of numbing agents. Unfortunately aside from managing his pain and trying aid his healing however we can its just a waiting game.

As much as I'd have liked to keep him home the best call to make for both Tasman and Myself was to get some extra help from our Team at MRC. We may be here a few days or we may still be here Monday when our next Clinic day rolls around.
Depending on Tasmans healing and Blood counts will depend on what needs altering come monday. We may be required to delay his treatment until Thursday depending on those results or even omit the one chemo drug entirely that has caused his Mucositis.

No parent wishes to see their child in such pain. I am so grateful for the team here and the support they offer without any judgement at all.

Although we are slowly getting closer to being home once again no two days of going through the treatment of B-ALL are the same here.

All your love and support means the absolute world to us and we're so incredibly grateful for the community we have surrounding our Little Soldier.
If in any way you're able to help support our little family throughout the remainder of our stay and for our transition home in coming months we'd greatly appreciate any support you're able to offer.

Love, Light and Healing Vibes,

The Gills xx

Apologies on being a little quiet over here folks whilst the dust has settled post fundraiser. This Block of Chemotherap...
28/01/2026

Apologies on being a little quiet over here folks whilst the dust has settled post fundraiser. This Block of Chemotherapy has been a challenging one to say the least. We had our day in clinic on the 27th Jan 2026 at 2pm for what we thought was to be a brief visit for some bloods to be run and a subcutaneous administration of Chemotherapy. However that soon changed which is the nature of such things with this journey when we were told Tasman needed Red cells. As we we're only expecting a short visit it then turned into almost 7hours at hospital with most of our time being spent between clinic and on the Ward

This meant port access. This Set Tasman off big time! Port access is something we're finidng harder to navigate as we are with blood tests. One small bonus for that is that Tasman really enjoys the Play room on the ward so it made it a little easier to move him through to the ward once initial obs were completed at the begining of transfusion.
Play and music therapist Chelseas have been engaged to help us with our clinic visits. They're not the same person and Yes both the play therapist and the music therapist are called Chelsea.

He spent a good while with Play Therapist Chelsea before his port was Accessed and she finished up for the day. He really enjoys all the toys she leaves for him in the clinic for our days. Both Play and Music therapists do such a great job with the children in clinic and on the ward.
We've also Spoken with Oncology Therapist Maria and sessions are being arranged. These are to help us gain tools to help navigate this journey further for all.

We have been told IVig (Immunoglobulin) is needed next week - I asked why its now become such a regular thing and it turns out that Blinnatumomab which is an immunotherapy drug we've used during his treatment and whilst giving his body a rest from chemo it depletes the Bcells. This will be ongoing likely around every 4 weeks until several months post his treatments completion when his Bone marrow starts to recover.
B cells are essential for identifying threats and creating targeted, long-lasting defenses through antibody production and memory formation. B cells are produced and mature in the bone marrow. Which is great however Tasmans is currently under a constant removal of all cells due to his Chemotherapy.

We have RDNS nurse's coming out to our unit for the next few days to administer one of Tasmans Chemotherapy drugs subcutaneously. Not his favourite thing to happen thats for sure, thankfully despite struggling he gets over it quite quickly which is usually once they leave.

All in all so far these last weeks and days of his Delayed Intensification Block have been a breeze comparatively to his first two weeks where he was losing his hair so rapidly and also was so sick due to chemo and Norovirus combined.
I'm just grateful that he has the energy to still be up and about playing and eating and drinking well.

The team really hyped up the end of this block as the worst part, He's not out if the woods yet and likely to be neutropenic by weeks end so we will remain cautious all the same.

No two days are the same here and each vary in their intensity or with how many S
Spanners are being thrown in the works because you just dont know. Yet as the days go on each one that passes is one closer to being home.

Our little Soldier just cannot wait to be back at the Orange House home in Port Augusta.

It's been a massive week for our little family especially with Hazel starting school this term. Such a huge milestone and so far shes loving every minute and taking it all in stride.

We all cannot wait to be home together once more.

19/01/2026

Thought we should show our faces and express our Grattitude with just a quick Thankyou to everyone whilst the kiddos were cooperative.
We truly are grateful to each and every one of you in every way you have helped us and continue to help us.

So once again Thankyou 💕 from the very depths of our hearts 💕

A Treatment update for Tasman will follow tomorrow...

18/01/2026

✨Thankyou's are in order! ✨
Also how much we raised from the fundraiser! 💜

16/01/2026

Head over to the event page to see the LIVE HEAD SHAVING, starting in 5mins!!

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Port Augusta, SA
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