Hunter Madden is continuing to show his trademark incredible bravery as his ongoing battle with leukaemia moves to a new stage.
The remarkable 5-year-old, who inspired Andy Keogh, Shane Lowry and several members of the Glory staff to participate in the World’s Greatest Shave earlier this year, has begun a course of immunotherapy this week which, unfortunately, has taken its toll on him.
Mum Kate and Dad David have been keeping everyone up to date on Hunter’s condition via the Hero Hunter Facebook page and here’s a selection of their most recent posts:
Kate Bettenay
“Yesterday we had the big meeting with our oncologist to discuss Hunters next rounds. We were going to have to redo the bone marrow as the sample done last Friday didn’t have sufficient cells but we were lucky enough to find out the board in America were happy with the sample provided and have gone ahead and assigned Hunter onto a study arm. His MRD (minimal residual disease) after reinduction is at 0.13% he needed to be 0.01% to be negative and in remission but he is really close and our oncologists is really happy with the result. What this means is the chemo is working. Dr Shanti and our biggest fear was that the Leukaemia has mutated and was chemo resistant.
We have been assigned to the new trial drug arm called blimatumamib which is an immunotherapy drug. Hunter will spend a week max inpatient, starting Tuesday while his body gets used to the new drug and then will be at home for the rest of the month. He will have his port accessed and an infusion going 24/7. The medication will be in a back pack on his back and he will be coming to hospital every 4 days to change the bag. This will happen for 2x month cycles with a week break in between. Then he will have a week or two break and straight to transplant mid January.
We are so happy with this news as the alternate arm, which is chemo alone, looks very tough and all in patient.
Best of all our Dr said we might be able to get back to school for a couple of hours each day!”
David Madden
“Night 1 – Blinatumomab.. Hunter went down hill pretty fast. Leg pain, shoulder pain and shortness of breath. A heat pack, Panadol and a lot of massaging finally got him to sleep. I had to lay on my make shift hospital bed listening to my little man crying and struggling to breathe in his sleep when he woke up startled with a 40 degree temperature and in pain saying he had to go number 2’s.. After I dealt with his bodily fluids, reheated his heat pack and started the massaging he drifted back to sleep for 5 minutes before sitting bolt upright and shouting totally animated that he had just had the best dream.
He was in a running race against his little brother Zac, however he was on a tractor and he possessed a cannon that shot cans of beer directly into my mouth, his Papa also had a small gun like weapon that shot mini cans of beer into the crowd just as it started raining candy…. Just a little insert into the Chemo Coaster we ride daily… All aboard..”
Kate Bettenay
“Day 3….. even though we are so grateful Hunter is on the immunotherapy, which I feel is the way of the future, it has taken its toll on our little boy. What the docs didn’t pre warn us was that seeming as the Blim goes 24/7 through his port, he has had to be cannulated in his hands to administer antibiotics for temperatures. Which today he had to have changed cause his vein collapsed in his left hand. Then on top of this he is having to have cultures and bloods taken from seperate veins in his arms to check counts and infections. He is like a little pin cushion.
Hunter puts all his worry and fears into needling and his anxiety is through the roof. His temperature has spiked again this morning so we will be in for another couple of days. He has lost his appetite completely and is very weak and has a lot of pain. Emma White that cream is doing wonders though. Fingers crossed tomorrow is a better day.
Even through all of this Hunter managed to have a great Halloween. Once he got his head around that it was going to be very different to a normal Halloween, he decided “trick or treating” this year was going to be very different. Hunter dresses up and went round to each door on the ward and reverse trick or treated. Knocking and offering lollies to all the kids in the room. If someone was in isolation he put them on the trolley outside their doors so they had something to wake up too. Honestly he is such an amazing little soul and we are so proud of him.”
On behalf of everyone at Perth Glory, we’d like to wish Hunter and his family all the very best and we’ll continue to keep you up to date with his progress.
In the meantime, for more information, or to donate to the Leukaemia Foundation, click HERE and details of the Hero Hunter GoFundMe page can be found HERE.
#OneGlory
