Saturday, February 23, 2013
When we went to visit our long-term care team, we met with an oncologist, nurse, dietitian, psychologist, neuropsychologist and teacher. There are so many late effects that chemo can cause such as hearing loss, dental problems, movement problems, learning difficulties, growth issues, psychological issues, fertility problems and even secondary cancers. Since Carys's chemo regime was relatively short - 4 cycles, I hope that she won't develop serious late effects. She looks so happy and healthy now, it's hard to imagine that the chemo would have lasting effects on her. But I do remember during our first chemo cycle, when Carys somehow managed to disconnect her IV tube that was pumping the chemo drugs into her central line, and how the nurses freaked out and rushed to put on their protective gear whilst shouting at me to wash my hands with soap and water, because I was standing there holding the dripping tube. That really hit home how toxic the chemo drugs are!
For her next check up in 6 months time, her dr has ordered an MRI, MIBG, urine test and hearing test.
Friday, December 21, 2012
Friday, June 8, 2012
Monday, December 12, 2011
Wednesday, August 17, 2011
Wednesday, August 10, 2011
It’s been a while since our check ups with our oncologist Lisa and surgeon Michael, and now I’m long overdue for a blog update! In all our previous check ups with Lisa, further surgery was always an option should the tumour progress It was quite reassuring to know that we had this option. Even though I hated the thought of putting Carys through another major surgery, it made me feel a little less helpless in that some action could be taken if need be. However, in this past cycle of scans and results, we also met with Michael, whom we hadn’t seen since Carys’s first operation. After reviewing all her scans over the past year, Michael believes that another surgery at this stage would be too risky. The tumour is so close to the nerves running along Carys’s spine, that a total resection would inevitably result in nerve damage. Since the tumour is not affecting Carys’s health in any adverse way, it would not be in her best interests to operate. I felt great respect for Michael when he said, “sometimes the hardest thing to do, is to do nothing at all.” It echoed my sentiment exactly as a parent having to just sit tight and wait. And from Chris’s perspective as a fellow surgeon, he felt that a good surgeon is one who knows when to not operate.
Although it is a relief that we don’t have to go through another surgery, we have to find the strength to keep going with this beast inside her. At the parenting course I did on coping, a mantra we were taught went “hello fear, my old friend.” At the time I learnt this, as part of a meditation exercise, it was too scary to even repeat this in my head. But now, this is just how I feel. We have come so far, with the fear constantly with us like an old friend. Not one that I want or like, but one that I need to accept.
Tuesday, June 14, 2011
It is scan time again, and Carys had her MRI last Monday. We will see Lisa on Thursday for the results of this and the urine test.