Support Ruby Barnes journey, stage 4 c
keeping this open solely because our lives have changed alot since stage4b childhood cancer. We consider ourselves lucky as we are now at an early stage of good health for our daughter.
Our main priority is we are all together as a family unit which means everything. We have relocated to Adelaide for peace of mind after a second fight with the nasty disease. We will miss Mildura and Red Cliffs Victoria but can always go back to visit our family and friends.
Am forever thankful to every single donation, that has helped keep us afloat in times of need. Thank you immensely.
Ruby has had her make a wish approved! She has a holiday to Qld awaiting us in 2024. I imagine that to hopefully be a beautiful family retreat we deserve. Ruby deserves.
Below is our journey, bless
As some of you may know,
Ruby did it! She reached remission stage. ⭐✨✨✨
End of September 2022 -Start treatment April 2022. She fought of NPC cancer of head and neck short for NasoPharangeal Carcinoma. Diagnosed 8 April 2022,.10 yrs old.
Her head and chest CT scans were clear and also same with the MRI. It was a day we will never forget. Ruby got to ring the remission bell up on clinic and I seen her smile of such strength that she had been able to get to that. 6 rounds of chemo each one taking two days on the ward, being pumped with fluids and medicines to try and stop the chemos side effects which made ruby violently spew., thank goodness for 2 wk break in between, it took a week for her to regain energy, trying to nag her to eat I felt bad for but so desperately needed her too.34 days of radiation seemed okay, first week, then we caught covid so that was a terrible experience being in iso, her being sick and sore from cancer and radiation and covid and having to abide by some strange protocols and go dress in yellow suits and still go to radiation. Being denied by taxis and I don't have my license I felt useless.and some surgeries in between, I felt lots of hard days.
The hard days came at near of end of treatment when we had to combine chemo and radiation 34 days non stop. Her weight kept dropping because her throat was burned from the outside in. Her mouth had ulcers and was very tender. She lost her voice then it kept changing, she has chemotherapy cravings like a pregnant woman, she was on nutrients and lipids to help keep her weight through the IV, in hopes we didn't need a feeding tube . They started that when she fainted because she was malnourished and beaten down by treatment. that didn't stop her. That was a heart crumbling time.
We were able to return to our country town of Mildura after 168 days spent at the Ronald McDonald house in Adelaide. Which we are now in awe of this organisation now and consider some people family and have been blessed to be able to stay there.
We were nervous and excited. We reunited with our home, pets, and family when ruby felt up for it. We knew we had to take it slow in recovery and it wouldn't be fast or anything. Slow paced. Physio. Check ups. Rest. Throat and neck healing from radiation. Autonomic nervous system needs to reset after all the treatment etc.
Mum Dad Daughter and Son, together at last. We loved it. A normality we longed for
Rubys ears started to leak so couldn't use hearing aids. Painful. Vertigo came and was scary and unsettling. Severe dermatitis reappeared from before cancer with a vengeance,
Rubys leg started to ache on the knee, ankle, shin, thigh, hip on right side
She's been dependent on a wheelchair for lethargy so we knew physio was needed. And for everything else. Pain wouldn't subside. We were hoping it would go away.
We went to the mildura show and got showbags and prizes.
We got our nails done.
We watched family movies.
We cranked music.
Ruby got a cat pram for her cat.
Rubys room was redesigned as a gift for when she got home by family members
Still the R leg pain got worse.....
We tried to push through and progress but it wasn't happening so we went to the hospital. An x-ray as sent to our Adelaide Dr and he called to see us earlier then scheduled.
That's when we knew something was up.
Rushed back for pet scan, CT and hip biopsy then had to wait a week for results.
Not the waiting again. Feeling like ground hog day almost but staying atimate it could be a sever staph infection or a weakened muscle. Anything but a return.
Worse fears confirmed, it has spored to her hip. Not again. It returned. Or a leftover floating cell attached to the hip (In my terms of understanding) as it's the same cancer but not in the same region. This is extremely rare to happen. rubys cancer was rare in the first place as most Asian middle aged men get the disease. her doctor has only treated around 3-5 children in his career.
We have a long road ahead, but it will not define us. We have rubys back all the way as always.
Around 6 months ago this fundraiser reached an amazing amount of $3810. Which helped us get our car fixed and on the road for trips back and fourth for the boys. I have decided to re activate it just incase in these hard times and because we are back in this situation again already, but also to help us save a few spending funds for rubys make a wish. She's opting for a holiday but food expenses and entertainment will still be upto us. We are so thankful to the people of make a wish.
We are looking at chemotherapy immunotherapy..treatment has started already.. 27 rounds we are looking at.
I am updating this page and Ruby has completed her 3rd last round. Only 2 more to go. And our hopes and dreams are for no more return and for ruby to not be threatened by cancer. For it to never return.
I have made sure ruby is looked after mentally aswell as physically this time. The distress of chemo days has worsened near the end because it's long, tiring, painful and strenuous.
Thankyou for your support. Whether it's donating money, sharing this post or chatting or just thinking of us.
Thankyou to all our friends and family and organisations for helping us without hesitation.
Parents of Ruby and Lochlan her little brother,
Kameo and Zac
Mildura/adelaide
Xo