Gracie Rae Philbin is a name that is well-known not only to those of us at the Little Fighters Cancer Trust, to Paedspal, to her family, to her fellow schoolmates – it is a name that is known across the Globe, and it is a name that will always inspire those of us who knew or just knew of the wonderful young lady to whom that name belonged…
Gracie was a beautiful young girl of around three-and-a-half years of age with the most piercing blue eyes, long blonde hair and mischievous smile when she suddenly became ill and after two fruitless visits the family doctor, was diagnosed with Stage 4 Neuroblastoma, which is a type of cancer that forms in certain types of nerve tissue, at the Red Cross Children’s Hospital.
Unbeknownst to this family, this diagnosis was about to change all of their lives drastically…
LFCT got to know Gracie and her family late last year, and have followed her brave battle day by day, providing help and support where we could, but mostly just marveling at the strength that this incredibly brave Little Fighter showed day after day.
Gracie showed tremendous strength throughout her devastating battle with childhood cancer, and 99% of the time she still had this beautiful mischievous smile on her face – through all the pain, through all the chemo treatments, through all the blood and platelet transfusions, through the many, many, many trips to the paediatric oncology ward at the Red Cross Hospital, through the surgery…
Gracie’s family started a page on Facebook, and the number of individuals who Walk with Grace attests to just how much this little girl and the fight that she and her family put up inspired and will continue to inspire thousands for years to come…
Below is Gracie’s story, written by her mom and taken from Gracie’s page…
18 June 2017
A few weeks ago, Gracie Rae started getting intensely high fevers. After taking her to our GP twice (both times nothing was found and we were sent home), I requested to be referred to The Red Cross Children’s hospital where we were seen to by a doctor who found a ‘mass’ in Gracie’s Abdomen.
After a second opinion, we were rushed through to an ultrasound where they confirmed that there is a tumour.
The next day, we went for an MRI, CT scan and biopsy. They told us that Gracie definitely has cancer but we needed to do more tests to find out exactly what type and at what stage it’s at.
A few days later, after a full body bone scan and a bone marrow biopsy, we were told that Gracie has stage 4 Neuroblastoma. Worse than this, we were told that her case is extremely advanced and she is terminal. Our little Gracie Rae… the cancer had spread to her bone marrow, blood, bones, lung, adrenal glands and nerve cells. We opted to do a mild chemo to have some time with her to make some dreams come true before the time comes for her.
25 February 2018
After a few months of chemo, Gracie’s body got to a point where the chemo was more destructive than the cancer. She was in and out of hospital with multiple platelet and blood transfusions. She got sick often and ended up in hospital a few times over the festive period.
But the chemo did do something… it changed the mass (forgive me but I don’t have the medical terminology) and made it viable to remove it.
Which we did. It took 5 hours in surgery, a night in ICU, a few nights in the high care ward and a night in the general ward and our girl was fit enough to come home. We were ecstatic! The surgeons were able to remove 90% of the abdominal tumor.
After looking at the tumor extensively, the oncologist realized that some of it was still very active (cancerous) and we were reminded again that This operation was purely a palliative treatment and Gracie’s life span will still be the same.
Currently Grace is on a very mild form of chemo that she takes orally at home. The intent is to slow down the growth long enough for us to spend some quality time together without her getting sick and needing to go to the hospital as often.
21 May 2018
Gracie is no longer on any form of treatment and has only been on pain medication. Treatment (even the ‘light’ chemo) made her very sick and dropped her platelet count. She had a blood clot in her head which was causing a lot of pain and discomfort so was put on anticoagulant infections which we did at home. This dropped her platelet count even more and the actual giving of the injection was very traumatic and painful. After a few weeks and a few stints in hospital, we decided to stop the injections and none of the clot symptoms came back (yay).
She has also had problems with going to the toilet so needs to take movicol everyday. The pain medication makes her constipated.
She’s on 4 different pain medications. She takes paracetamol and morphine every 4 hours.
If her pain is managed well, she is happy and lively. If not, she’s aggressive, emotional and only finds comfort on my lap.
13 August 2018
Gracie Rae took her last breath at 8:30pm. She was with her Mom, dad and big sister Ella Rose.
She fought hard until the end.
It has been the hardest few months of our lives. But we have seen the love and support from our friends and family shine through. We thank and appreciate every single person who is helping us personally, donating to Gracie’s dreams, donating money for living expenses, the food deliveries, the prayers, the love, the visits, the kind messages of support and encouragement. we are so blessed to have you. Ian and I want to thank you again, from the bottom of our hearts.
On Saturday I had the privilege of attending the Celebration of Life of Gracie Rae, and it was indeed a privilege because what abounded there was support, love and respect. Yes there were tears too, but overall it was really a beautiful and heartfelt celebration for a wonderful, strong, superhero of a young lass that did not know what the words “give up” mean.
Gracie loved Spiderman, the colour blue, candyfloss and sour worms, not necessarily in that order, and they all abounded – there were blue and gold (awareness ribbon colour for childhood cancer) ribbons around the trees, and everyone was also given a gold ribbon to wear.
Team Gracie tees were plentiful… Spiderman was there to greet everyone at the door and also on the food table, there were dinosaurs, blue balloons and blue candyfloss, a jumping castle and jungle gym and of course loads of sour worms (although I did notice that not everyone shared Gracie’s enjoyment of them, and I saw at least one worm making a break for it out the door heading for the jumping castle…)
After a short service, Gracie’s mom Kate, dad Ian and big sis Ella did the final send-off for Gracie with brightly coloured blue smoke, and someone sent a blue balloon off high up into the heavens for Gracie…. you can see a short bit of drone footage from the final send off here
Gracie you will never be forgotten – your strength and your beautiful smile in the face of adversity will always be an inspiration to many – Rest in Peace now Angel – Fly High & Far without pain, and do the thing you like most – Have Fun!!
To Kate, Ian and Ella and the rest of the family, we send our deepest condolences as well as our gratitude to you for sharing Gracie’s and your most difficult journey with everyone for so long… it must have been really difficult to be so open all of the time, but it has opened many people’s eyes to the difficult battle that children with cancer and their families go through…
Those of us who got to know Gracie and you all over the past several months will never forget – we will ALWAYS Walk with Grace.
Below is the poem that was read during Gracie’s service:
THE BRAVE LITTLE SOUL
~ John Alessi ~
Not too long ago in Heaven there was a little soul who took wonder in observing the world.
He especially enjoyed the love he saw there and often expressed this joy with God.
One day however the little soul was sad, for on this day he saw
suffering in the world. He approached God and sadly asked, “Why do bad things happen;
why is there suffering in the world?”
God paused for a moment and replied, “Little soul, do not be sad,
for the suffering you see unlocks the love in people’s hearts.”
The little soul was confused. “What do you mean,” he asked.
God replied, “Have you not noticed the goodness and love that is the offspring
of that suffering? Look at how people come together, drop their differences
and show their love and compassion for those who suffer. All their other motivations
disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued,
“The suffering soul unlocks the love in people’s hearts much like the sun and the rain
unlock the flower within the seed. I created everyone with endless love in their heart,
but unfortunately most people keep it locked up and hardly share it with anyone.
They are afraid to let their love shine freely, because they are afraid of being hurt.
But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all.
Many souls have bravely chosen to go into the world and suffer – to unlock this love
– to create this miracle for the good of all humanity.”
Just then the little soul got a wonderful idea and could hardly contain himself.
With his wings fluttering, bouncing up and down, the little soul excitedly replied.
“I am brave; let me go! I would like to go into the world and suffer so that I can
unlock the goodness and love in people’s hearts! I want to create that miracle!”
God smiled and said,
“You are a brave soul I know, and thus I will grant your request. But even though
you are very brave you will not be able to do this alone. I have known since the
beginning of time that you would ask for this and so I have carefully selected many
souls to care for you on your journey. Those souls will help you create your miracle;
however they will also share in your suffering. Two of these souls are most special
and will care for you, help you and suffer along with you, far beyond the others.
They have already chosen a name for you”.
God and the brave soul shared a smile, and then embraced.
In parting, God said, “Do not forget little soul that I will be with you always.
Although you have agreed to bear the pain, you will do so through my strength.
And if the time should come when you feel that you have suffered enough,
just say the word, think the thought, and you will be healed.”
Thus at that moment the brave little soul was born into the world,
and through his suffering and God’s strength, he unlocked the goodness and love
in people’s hearts. For so many people dropped their differences and came together
to show their love. Priorities became properly aligned. People gave from their hearts.
Those that were always too busy found time. Many began new spiritual journeys,
some regained lost faith – many came back to God. Parents hugged their children tighter.
Friends and family grew closer. Old friends got together and new friendships were made.
Distant family reunited, and every family spent more time together. Everyone prayed.
Peace and love reigned. Lives changed forever. It was good. The world was a better place.
The miracle had happened. God was pleased.