Deeply saddened by the story of one family fighting to prevent their son from receiving chemotherapy and radiotherapy, Perth’s paediatric oncology community is coming together to thank the doctors, nurses and support staff at PMH and the research community worldwide for saving our children’s lives.
While the treatments can be brutal and many children do suffer long term side effects, exactly who will be affected and how they will be impacted is unpredictable. But one thing holds true above all – these children are alive, they are happy, and they are thriving!
Liam had HLH, and at diagnosis he was critical – doctors said without chemotherapy he would have survived just a few more hours. He still requires a feeding tube in his tummy, his speech is delayed and he has additional developmental delays, but therapy and support really has been doing wonders. He’s amazing!
Bonnie diagnosed with a large medulloblastoma wrapped around her brain stem at the age of 6. She underwent a 9.5 hour surgery to remove and was in ICU for about two weeks. She then started rehab followed by 30 rounds of radiation to the brain and spine, and 9 cycles of chemotherapy. She is here today because her treatment saved her life! She now has clear scans, is walking again talking again and loves life.
Harry was diagnosed August 2014 with Stage 4 Neuroblastoma. He underwent 5 rounds of chemo, 6 hour surgery, high dose chemo, 20 rounds of radiation and 6 months of immunotherapy. He wears hearing aides due to the chemo, but he’s here and he’s amazing.
Ruby was diagnosed at 7 months with acute myeloid leukaemia. She had chemo and was in remission for just over a year, before relapsing in the brain. She had additional chemotherapy and a bone marrow transplant and is now doing great. Thanks to treatment she is still here.
3 days after his first birthday, Max was diagnosed with high risk AML. He lived in an isolation room for over 6 months had numerous rounds of high dose chemotherapy and a bone marrow transplant. Almost every day through treatment Max played, danced and laughed. He’s 5 months post transplant and has no side effects so far.
Josh was diagnosed with ALL when he was 8. He had 3.5 years of chemo treatment and unfortunately relapsed only 5 months off treatment. He had intensive chemo, radiation and then a bone marrow transplant. It was horrific for him, but it saved Josh’s life and so far his family have had 6 more years of birthdays, Christmases and quality time together.
Mighty Max will be 3 in 2 months. He was born with Stage 3 Neuroblastoma attached to his spine, diagnosed at 6 weeks. He had 2 rounds of chemo and a surgical resection, and has been in remission for 2 years and 3 months. So far, he suffers no side effects from the treatment itself, just some nerve damage to his left foot from the original tumour. But he is not letting that slow him down!
This is Katie, diagnosed with Hodgkins Lymphoma stage 2b in May 2011 at age 12. Katie had chemotherapy and radiotherapy. This is Katie’s 5th year of remission. She is always so positive! She recently had her year 12 ball, and will be 17 in a couple of weeks.
Meet Finlay, diagnosed February 2015 with stage 4 high risk refractory hepatoblastoma. His initial prognosis was 30% survival for the first five years, but when his diagnoses changed to include refractory disease that dropped to less than 10%. He fought hard through three major surgeries with PICU stays, 1 emergency surgery, countless port, broviac and biopsy surgeries. He had 11 rounds of high dose intensive chemotherapy, a virus that turned deadly and numerous infections, but he is now two months in remission! He has hearing aids, weakened bones and his future is uncertain, but he is living every day to the fullest!
This is Jaxon. He was diagnosed with bilateral Wilms tumour at 6 months old, October 2010. Many surgeries and 8 months of chemotherapy brought him remission for 3.5yrs, but he relapsed in December 2014. He was again treated with many more surgeries, stronger chemotherapy and radiation, and he’s now been in remission again for 5 months! There have been many hard times during his treatment, but he still has so much to smile about!
Thomas has only recently been diagnosed with Rhabdomyosarcoma. He has had two successful surgeries at PMH, and is luckily now classed as low risk. Hopefully the six months of chemotherapy he is currently receiving will ensure the cancer doesn’t come back – without it, doctors say it most certainly would. Although the treatment isn’t pleasant, it’s saving his life!
Kaitlyn is 16. She was diagnosed with Neuroblastoma Stage IV when she was 3 – the tumour filled her abdomen, and had spread to her neck, knees, hips and cells in her bone marrow lining. She had 5 rounds of high dose chemotherapy, surgery to remove as much remaining tumour as possible, two rounds of mega chemo, with double stem cell transplants/rescues, followed by 10 rounds of radiation and six months of Accutane (biotherapy). At diagnosis she was given odds of less than 20%, and yet she is still here and still smiling 13 years later!
This is Angus. He was diagnosed with Ewings Sarcoma in June 2014, and finished treatment April 2015. He has a new donor bone in his leg which he’s still learning to trust, but he’s always been special and his parents wouldn’t have it any other way!
Ethan was diagnosed with ependymoma (brain cancer) when he was 20 months old. He had surgery and chemotherapy at PMH, and very specialised radiation at Peter MacCallum Cancer Centre in Melbourne. Ethan is now nearly 6 years old, and suffers from various side effects (as well as having autism unrelated to his treatment) but he is a happy, amazing little man. Ethan has taken on every obstacle thrown at him with fierce determination.
Aroha had rhabdomyosarcoma, a lump on her shoulder. Luckily it was caught early enough for them to cut almost all of it out and she had 20 sessions of radiation and 45 weeks of chemotherapy. The only time she was really knocked down from treatment was during the first three weeks, the rest of the treatment she was so full of life and you wouldn’t have even noticed she had cancer except for the fact she had no hair and an NG tube. She is now happily 2 1/2 years cancer free and has no major side effects.
Saxon was first diagnosed with Wilm’s tumour in January 2013. He went through 5 surgical operations and 10 months of chemotherapy. He went into remission in September 2013, but sadly relapsed n April 2014. Saxon will be finished treatment in June 2016. He is a brave and courageous kid who despite the trauma he has experienced still smiles and makes others smile.
This is Jaime, who was diagnosed at age 6 with a PNET brain tumour. She is now 15, and has regular seizures and adrenal insufficiency, requires cortisone, growth hormones and thyroxine, had cataract surgery in both eyes, and has an intellectual disability. Despite all of this, she is gorgeous and loves life.
Teneille was diagnosed with leukaemia at 14 months, and is now aged 9!! The chemotherapy has left her with some unwanted side affects that she continues to deal with, but she is alive and celebrating birthday after birthday and all the milestones children do. She has an amazing life!
Henry was diagnosed with ALL shortly after his second birthday. He is now in remission after receiving intensive chemotherapy but still needs treatment for another 17 months. He’s a little fighter and has taught his family the real meaning of life.
Damon was diagnosed at 27 months with ALL. He had extensive chemotherapy and cranial radiation during treatment. He is now 6 years past his last treatment and he is in perfect health. Throughout treatment he always had a smile on his chubby little face and lit up every room he went into.
Austin was diagnosed with stage 4 neuroblastoma at 6 weeks of age. His treatment involved resection of the primary tumour as well as removal of the right adrenal gland, followed by 4 cycles of chemotherapy. He is now a thriving 9 year old boy, and his family feel blessed to have him.
This is Nova, diagnosed with Wilms kidney tumor at 18 months of age. She had a radical right nephrectomy, and 6 months later metastases were found in her lung. Nova had radiotherapy and another 9 months of chemotherapy. Now nearly 9 months off treatment she is a perfectly healthy 3 1/2 year old, full of life and love.
William was diagnosed with ALL at 4. After 4.5 years of chemotherapy, he had the scare of a relapse and then cysts were found 2 years later. He is doing wonderfully well now. He has a little problem with his feet as a result of his chemotherapy, but that is all. Next month he turns 13!
This is Tommy. He was diagnosed with stage 4 neuroblastoma right after his 2nd birthday. He underwent 5 rounds of chemotherapy, surgery, mega therapy, 20 rounds of radiation and 6 months of immunotherapy. Thankfully he has had no side effects from treatment so far and he is now 12 months in remission. He’s living life to the full!
Isabella was diagnosed with Diffuse Large B Cell Lymphoma at 11. It had collapsed one of her lungs and was in her mediastinum, lungs, kidneys, bowel and uterus. She had initial chemotherapy, then the cancer spread to her brain. She had a craniotomy and more chemotherapy that crossed the blood brain barrier. When refractory disease wrapped around her aorta, she was told to expect the worst, but after more severe chemotherapy, megatherapy, stem cell transplant and radiation she’s now 18 months in remission and a thriving, amazing teenager.
Isla was diagnosed with High Risk Pre B ALL in 2011. She was two weeks off her 4th birthday. She endured two and a half years of treatment, and has now been off treatment for almost three years! Isla will be 9 soon and as of yet has not shown any signs of late effects.
Blayze was diagosed with low risk Acute Myloid Leukemia. He went into remission after his first round of chemotherapy and continued to do 3 more high intensity rounds. Sadly after 2 and a half months, he relapsed and needed a bone marrow transplant from his 5 yr old sister and received a further 3 rounds of chemotherapy. Blayze is still in treatment but continues to fight, live and enjoy life.
Jarvis was diagnosed with standard risk ALL on Christmas Eve 2014 and started treatment immediately. He responded brilliantly to his treatment protocol and was subsequently reclassified to low risk ALL. Everyday he takes oral chemotherapy, and every three months he is admitted as an outpatient for his IV & IT chemotherapies. He will finish his treatment early into 2018.
Christine was diagnosed with high risk ALL, and her family was told she might not survive the first week after diagnosis. She has learning difficulties and won’t be able to have children naturally, but she is still here and loving life every day!