Cancer unfortunately touches too many lives and cancer in children and young people is especially difficult to process. We are asking our community to help us raise awareness this International Childhood Cancer Awareness Month. Stand with us and wear yellow this Thursday 26th September. Share your photos on your social media and #tlcsupports and #childhoodcancerawareness
A beautiful Mama in our community recently and tragically lost her son to this heinous disease. She has shared her story with us below. We hope that sharing such stories, while devastating and difficult, is vital because conversation ultimately leads to research and cure.
My beautiful boy Todd.
This is so hard to write, his story, our fight. Todd was diagnosed with Hodgkins Lymphomia at the age of 20. It was discovered when he went to emergency with pains in his chest, although this was not his first symptom. He had had really itchy skin for some time and after numerous doctors visits still no answer. They told him to "just try different washes/soaps."
An X-ray in emergency found a mass on his chest. They told us there and then that they thought it was cancer. I will never forget the pure panic in his eyes as he said to me, "Mum I don’t want to die." I looked him straight in the eyes and said "I’m keeping you." Trying not to show my fear and panic was one of the single hardest moments of my life. No mother should ever hear those words about their child. Through his 7 year battle the words "I’m keeping you" helped us both so much and were said 100s of times.
Todd was transferred to Fremantle hospital where doctors told us not to worry, if it was Hodgkins it was the easiest to treat and due to his health and age there was a 97% cure rate. How relieved we were, although still so scared of the unknown. He had 6 months of chemo before he was granted his Starlight Children’s Wish. We went to the Gold Coast for a family holiday where he had the best time. We all did, with hope that the chemo was working.
When we returned home Todd had more scans, we were told he was clear! How happy I was it was over! Despite being told the good news, Todd thought the cancer was still there. After doctors visits and being told he would always think this, even if he got a simple cold, we convinced the doctors to scan again. My boy was right, it was still there. He completed another 3 months of stronger chemo to get his body ready for a stem cell transplant using his own stem cells. The treatment put him in remission and we celebrated again. Todd married his childhood sweetheart, Shea, who had never left his side. They built a home and were happy, living without cancer.
Todd knew his body and symptoms so well and told me he thought it was back, this was a year after his stem cell transplant. Again he was right and again my world turned upside down. We were told they could do a donor stem cell transplant but this came with many risks, but we had no choice, we had to fight. I was keeping him no matter what!
Todd had the stem cell transplant after another 3 months of aggressive chemo, the donor was a 98% match and my boy was home for Christmas. We were told GvHD (Graft-versus-host disease) was his biggest risk. This is when your body fights the donor stem cells. Todd started off with stomach problems and was hospitalized. We were told we were going to lose him but he fought it and beat it. Unfortunately it then attacked his eyes and he had to have drops made from his own blood to put in his eyes. All through this he never gave up, he just kept fighting - he even travelled with Shea.
GvHD then affected his lungs and he was sent to hospice where we were told to say goodbye. I don’t know how I got through this time or how he stayed so strong and brave. Todd proved them wrong again and walked out of the hospice. Shea and Todd went to New Zealand and started working part time. My boy, my baby so brave. He was told so many times that there was nothing else they could do and yet he never gave up.
Ultimately, though, I lost my baby to a lung infection from GvHD. In his last months he could hardly walk or really do anything due to not being able to breathe. He still made me laugh, cared about his family and worried about Shea. I don’t know why I couldn’t keep him. I miss him every minute of everyday. He told me "Mum I will always be with you".
I love you my beautiful boy and you will always have a piece of my heart. In Todd's 7 year long fight he had22 scans, 10 lumbar punctures, 6 lots of radiation, too many procedures and blood tests to count, eye surgery, too many PET scans and years of chemo. I was always scared too go away in case he needed me, even though he had his beautiful Shea. They made me go away for a week and Todd put an alarm on my phone. It goes off at 8am everyday "Morning mum I love you." I always say "love you too baby" that recording is my most treasured possession even though it makes me cry.
By Sharon Manders
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