#TuesdayTunes: Songs With Meaning
Monday December 23, 2019
Throughout this year, we have shared monthly #TuesdayTunes on our social media – songs chosen by parents, survivors and professionals in our retinoblastoma community because of their special personal meaning. As the year draws to a close, we gather together all this beautiful music and insight, and welcome in the new decade with heart.
January
Defying Gravity – Wicked, the Musical
Rb survivor, and WE C Hope CEO/Co-founder, Abby White says:
“I saw Wicked in 2015 with Olivia Muller from Australia, whose son lost both eyes to bilateral retinoblastoma. We’d spent the previous week trekking in Tanzania to raise funds for our Kenya program. We enjoyed the West End musical during a brief visit to the UK before her long journey home to Adelaide.
This song speaks to me in so many ways. Of letting go, of having courage to follow your own path and do the right thing – no matter the cost or what others think, of overcoming limits, and looking to the future with hope. I find the lyrics especially powerful to sing along to, to motivate me on a grey morning.”
February
Look How He Lifted Me – Elevation Worship
Rb Parent Yanin says: “Max absolutely loves this song! Not even one week after his second eye was removed, he was dancing and singing along, and we as his parents are reminded that God will always be there for us, lifting us every step of the way ❤”
March
My Coat Of Many Colors – Dolly Parton
Remembering Jayne Kamau, our brilliant child life specialist for children with cancer in Kenya, lost aboard flight #ET302. This was an anthem in her life, a song with deep personal meaning that she returned to time and again. We surrounded her with colour and light on the day we said farewell to her in Nairobi ♥
April
Hallelujah – performed by Grace Padilla
Young adult Rb Survivor Grace is a great encouragement to young survivors and families, taking on the world in the full embodiment of her name. She says: “I chose to sing this song because sometimes in life we need a Hallelujah. This song truly encapsulates that message and has been there for me in times of trouble and when I am in need of a prayer.”
May
Gold – Linda Eder
Retinoblastoma survivor Sassy says: “Gold is the color of childhood cancer. It is my color, our color as survivors. It is our flag to the medical community that we are triumphant and victorious, no matter what the cancer does to us. And as an adult survivor continuing to live with the effects of retinoblastoma, this song gives me a safe place to put my tears of grief and rage when it’s too much, and a victorious smile emerges, that even in the face of cancer, yes, I have discovered the joy in living, breathing, fighting, loving and experiencing all this body offers me, no holds barred. In my life, it is safe to say, I have touched the gold.”
June
That’s What Friends Are For – Dionne Warwick
Like every session hosted by Camp Sunshine at Sebago Lake, Retinoblastoma Week is supported by many brilliant volunteers. They range from college students to retirees, and include members of former camp families – young adult survivors, siblings and parents. Volunteers serve as camp counsellors, providing 1:1 buddy support to children throughout the week where needed, and in a vast array of roles across the program.
Camp Sunshine programs would not be possible without Camp Sunshine Volunteers. They are heroes and angels to our Rb Week community, and we celebrated them in June as every year with this beautiful heartfelt song!
July
August
I’m Still Standing – Elton John
Rb Parent Chris says: “This has become an anthem of hope since my son was diagnosed with eye cancer. Thinking of other parents who could ‘never know what it’s like’. When we found out, our ‘blood froze just like ice. Once we never could hope to win’, but my son is ‘Still Standing better than he ever did, looking like a true SURVIVOR, feeling like a little kid’!”
September
Fight Song – Rachel Platten
Rb Parent Indira says: “several years ago, I saw you share this video during Childhood Cancer Month. I didn’t know the song before then. It gave me a lot of strength and courage because my son was ailing badly at the time. I played the song for him and we enjoyed watching it together, making up stories about the different people in the video. He is no longer here, but I still listen to the words to remember the light we had in the hard places, and to put courage in my fight to be living without him.”
October
Lullaby – Josh Groban, featuring Ladysmith Black Mambazo.
Rb Parent Kristi says: “I sang this to my son every time he was being put to sleep for his EUAs. He was always asleep by the time I sang “The world has turned the day to dark” and I’d leave that OR with heavy heart, praying for good news. I sang to comfort my son, but I sang to comfort myself too. To tell myself in that awful feeling when my chest tightened up with fear of the outcome, that with love through the darkness, we’ll always find the way, dry the tears, find the voice to sing that sweet lullaby.”
November
Amazing Grace – performed by Colleen Ranney
Sandra Staffieri, #Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, says:
“I used to hum Amazing Grace to my children from infancy to calm them to sleep or when they were in pain. So it seemed natural to do the same one afternoon in the operating theatre.
A newborn sibling, 2 weeks old, needed an eye exam to look for signs of cancer, and we needed to take blood for genetic testing. Being able to confidently exclude children at risk of developing tumours has been a turning point in the retinoblastoma landscape.
We weren’t anaesthetising the baby. His parents were busy with their older child as he awoke from his eye exam and treatment. I promised his mother I would look after him as if he were my own. I held him gently in my arms, and took him to the exam.
I lay him on the bed and the eye team examined his eyes. All clear – that’s great. Next the anaesthetist proceeded to draw some blood from tiny veins, well hidden under layers of glorious baby chubbiness. He found the best blood vessel to be in the baby’s foot – and as he tried to squeeze the blood, the little trooper began to cry. I instinctively leant forward and started to hum Amazing Grace as I would for my own baby.
Retinoblastoma treatment epitomises the concept of multi-disciplinary teamwork. In that room we had the anaesthetist, his technician, two nurses, a doctor and myself. One by one, they all joined in humming along to the tune of Amazing Grace to calm this anxious baby. He settled and we got the blood sample we needed. In that beautiful moment of unity, we truly were a team, all working towards the best outcome for one little boy.
Post-script: his genetic testing was negative, so we never had to examine him again for retinoblastoma.
December
This Is Me (The Reimagined Remix) – Keala Settle, Kesha & Missy Elliott.
Retinoblastoma survivor Sarah says: These lyrics instantly resonated with me. Rb has affected me and my child. I’m no stranger to its darkness, and I carry its scars – broken parts that my face cannot hide and my heart cannot hold silent, but the world would rather not see. I’ve never felt ‘normal’, and I’ve known horrible loneliness. People with small minds mock me and block me and diminish me because of my damaged eyes and sight. I’ve been knocked down over and over again. But I won’t apologise for being me, or for how I choose to live my life or love my family! ‘I am brave, I am bruised, I am who I’m meant to be, #ThisIsMe.’ I won’t be scared or shamed. Rb survivors are capable warriors reaching for the sun, and there’s truly a place for all of us in this world, for we are glorious!”
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