Today Zoe had the MRI that has been delayed by some 10 weeks due to problems with the machine. When we got to Starship afterwards to start her long chemo day the consultant told us we probably wouldn’t have the results until after Friday, when they have their review meeting. I told him that the anaethetist was concerned about the level of swelling around her airway and had had to administer dexymethazone (a steroid) and an adrenalin nubuliser and wanted to discuss it with him. I was horrified to look out the door a few minutes later to see two oncology consultants and Zoe’s radiation consultant huddled around a computer screen and incredibly relieved when Zoe’s consultant came in a few minutes later to say they were really happy with the results so far! There are only a few small areas left (1cm across) showing any sign of active disease, and some of what is showing up may be due to radiation effects. For those of you who don’t know the full story, in April the affected area was from her shoulder to the base of her brain, so this seems in the realm of the miraculous.
The reason they had looked at the results early was partly due to the swelling around her airway and throat/chin area. They believe it’s a radiation side effect, causing poor drainage of the lymph nodes in that area which may get better, but unfortunately may be permanent. It’s the cause of Zoe’s snoring getting worse over the past week or so and will be real concern if she gets any cold or infection or it gets worse. That part’s a wait and see game.
In the meantime we can start to think about life after treatment. Mark (Zoe’s consultant) says we can think about taking a holiday about the end of February, just in time for Zoe’s cousin’s third birthday.
This has come at a time when I have been doing some thinking about how we can balance living every day now with the necessity of putting some things off til the end of her treatment. This was prompted by learning of the death of a little girl we spent some time with in the clinic and at the CCF Family House. When we met her, this little girl had spent nine months of the last year living in Ronald MacDonald House and two months in isolation in the transplant unit before being transferred to palliative care. She had only a few very short months left to really live her life. Luckily during this time the Make a Wish Foundation enabled her to have some very happy times.
On the other side of the scales we have seen the example of 12 year old Ruby, who survived a battle with cancer that saw her lose 70% of her liver and undertake a gruelling regime of chemo. Unlike many people who might want to just put this behind them, Ruby is putting her energy into fundraising for Starship. You can see what she’s doing at by clicking here.What an inspiration.
We have a long way to go and we don’t underestimate that the second half could well be as tough as the first, but we are heartened by our good news at this milestone and by the generous and varied support we have had from so many people on our journey.