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.

Last weekend we had a fab birthday party for two of Zoe’s friends whose parties she had missed out on. This is of course a tragedy when you’re 3. Plus, any excuse to make cupcakes with pink icing and cookies with pebbles in them is a good one. Zoe has spent so little time with other kids recently I was a bit worried how it would go. But these 3 were at daycare together from 10 months old and it was about 2 minutes before they hit their straps. Sqealing, playing, dragging out every toy in the house, it was like they still saw each other every day. Balloons, rings with lipgloss in them, making tiaras with “jewels” on them, piggy back races down the driveway (hey, how come the parents are doing the running around and the kids are getting rides?) and 4 hours later only the debris was left. What a gang!
The rest of the week was pretty much taken up with our first admission to Starship. We count ourselves incredibly lucky to have got half way through treatment with only one admission. For some of the kids its a second home, which is why its so cool the new ward is so amazing.
On Tuesday Zoe’s gums started bleeding so a quick trip to clinic for a platelet infusion. Wednesday was red cells. Wednesday night was a fever of 39.5, so back to Starship for admission. With chemo kids, a fever can mean a deadly infection, so they’re pretty cautious, especially when their white blood cells are low. Two platelet infusions later (fevers eat platelets, who knew?) some IV antibiotics and Zoe’s fever normalised, but not having found an infection source, Zoe was put into isolation and tested for swine flu and common respitory viruses. Lots of yellow gowns and disposable masks later she was cleared. Actually, she was probably the least sick kid on the ward. They let us home today, even though her white cell count is still not great. Who knew paying the bills online while sipping pinot gris would be such a treat after surviving on instant coffee, toast and cholocate bars (that’s not what they feed the kids by the way).
For some of the parents, what we’ve done for five days in the last 4 months is going on about every second week and their kids are having a lot more bad days. They deserve medals, but at least they’ve now got a family friendly environment thanks to the Starship Foundation. I’d have to say the staff all deserve medals too, special mention to Zoe’s friend Nikki the Nurse and Jo “who loves us.”

Zoe had a fantastic blood count yesterday! Her white cell count is 60 and incredibly her platelets are normal! That means she is up for some company her own size this weekend, which I’m sure she will be delighted with.
She has also put on 600g, the 400 she lost since her first biopsy, plus 200. This is due to the naso-gastric feeds, since all she’s been living on is feijoas and hot cholocate.
Unfortunately she accidentally pulled her NG tube out last night and putting in back in is a very yukky process. Changing the plaster that keeps it on her face was bad enough. If she makes signs of eating well today we might try to leave it til after the weekend.
We are hoping for her to catch up with 3 little friends and have a zoo visit too.