Caiden is on the home stretch for his radiation treatments, having gone through 24/30. Next steps are we wait 4 weeks until he is able to have an MRI to check in on things post treatment – this allows enough time for the swelling that happens during radiation to reduce so that they can get an accurate measurement of the tumour.
His treatment today has been put on hold until tomorrow, as Caiden is needing to have an MRI of his spine. Caiden has been experiencing pain in his spine for quite some time now and a CT scan picked up a ‘suspicious shadowing’ which needs to be further looked into.
We hope that this is nothing to be worried about and also hope that this isn’t related to the tumour. We should hopefully find out the results from the MRI tomorrow.
A lot has been happening since my last update;
• We’ve received a mix of good and not so good news. The good news is that they can see that the radiation treatment is working and shrinking the tumour which we are pleased to hear as there wasn’t space for free-flowing fluid to circulate prior to the treatment.
The not so good news is that he still isn’t showing as much improvement as they would expect to see based on the tumour shrinking. It could likely be, that the tumour has caused damage to parts of the brain that may not be repairable or improve his symptoms.
• Caiden’s oncologist has been gradually reducing his steroid dosage and he is now down to 3mls a day. Since his diagnosis, he has been on a high dose of Dexamethasone to help reduce the inflammation of the tumour which helped reprieve some of the issues he had with eating and drinking.
Previous attempts at weening his dosage down didn’t have the best of outcomes so to be in a position where he has been able to successfully do this with the aid of his radiation treatment has been a positive step forward.
• Child cancer came for their first home visit, she brought along a whole lot of courage and bravery beads that Caiden had earnt along with some super special ones for his bravery for going through what he is during Christmas and also for him reaching his 100th bead.
There is another special bead which has been put away in a special place, to be used in a time when Caiden feels he needs some courage.
• Caiden’s tumour sample and bloods are making their way to the USA for further testing. They are going to see if there are any more mutations apart from his h3k27m mutation. This will allow us to see if he may need any other treatments that may respond to those specific mutations i.e. chemotherapy.
• Caiden will be starting a clinical trial at the end of February, a trial that is new to New Zealand and one that has shown some positive progress for kids with DIPG in America and Australia. We look forward to learning more about this when it starts and wish for nothing more but to receive some positive results throughout the trial.
Despite going through everything that his little body has had to endure since his initial diagnosis, Caiden has been so brave and so strong every step of the way and has always shown that beautiful, glowing smile that warms everyone’s hearts.
While we try to teach our children all about life, our children teach us what life is all about and what matters the most – the people we love!
