Nixon was suffering from high temperatures, was extremely lethargic and had no appetite.
‘He was getting temperatures almost weekly and just didn’t seem like himself,’ says Tameka, Nixon’s Mum.
It wasn’t until Nixon started experiencing severe pain in his abdomen in July 2017 and was sent home yet again with some laxatives, that Tameka and Dan were finally able to make some headway with the diagnosis of Nixon’s real condition.
Two days after coming home from the hospital we went straight back to Gold Coast Hospital University Emergency. That’s when blood tests were finally conducted and came back abnormal.
At 2am on 27 July 2017, Nixon’s parents received the news that their little boy wasn’t well at all. He was extremely anemic and had an enlarged liver. As Nixon was rushed in for an emergency ultrasound, the doctor’s told them to brace for something nasty and long term.
Unfortunately, the couple’s worst fears were confirmed, when a primary tumor was discovered in his abdomen, along with nodes in his chest.
Everything sprang into action after the tumor was found. Nixon was transferred to Lady Cilento Children's Hospital where he was put under for a CT scan and then again for a central line that was inserted into his chest. A biopsy of the tumor was taken along with marrow aspirations. The results weren’t good, he had neuroblastoma, cancer was everywhere.
"The cancer was throughout his abdomen (from his pelvis to his diaphragm), there were spots on his chest, right arm bone and both thigh bones." recalls Tameka.
Complex & detailed: The treatment plan
Chemotherapy started the very next day. The cancer was pushing up onto Nixon’s diaphragm making it hard for him to breathe, so he also ended up on oxygen. One week later he was transferred to Pediatric Intensive Care Unit.
Since the diagnosis, little Nixon has had to endure:
- 8 months of horrible chemotherapy and the side effects
- 33 blood product transfusions
- 3 PICU admissions
- 12-hour major abdominal surgery where 85% of the cancer was removed
- 21 General anesthetics
- 62 GCSF Needles in his leg
- 2 stem cell transplants with high dose chemotherapy
- 12 sessions of radiation
- 231 Days in hospital
And so much more..
The chemotherapy also caused hearing loss, so Nixon has also been fitted with hearing aids.
Perhaps the most horrible and painful part has been the extensive immunotherapy. Nixon still another 4 months of immunotherapy to kill any tiny residual neuroblastoma cells that might be left in his body and to stop those cells from multiplying.
Nixon continues to amaze his parents with his strength and handling of all these invasive and painful procedures.
‘Words cannot describe the amount of love that we have for our amazing little man. Always a cheeky smile on his face,’ says Tameka.
The couple is also grateful to the amazing staff at Lady Cilento and Ronald McDonald House for their support during this incredibly tough journey.
"Words cannot describe the amount of love that we have for our amazing little man. Always a cheeky smile on his face."
Neuroblastoma needs more funding for research into more effective treatments. Survival rates are not good enough for our beautiful children. There’s always the worry about the high chance of relapse and what the future holds. We also need more funding for better treatments to help reduce the serious long-term side effects caused by the harsh chemotherapy.
Nixon’s family is proud to support Run2Cure Neuroblastoma so that they can create more awareness and potentially help a family achieve an earlier diagnosis.