Living in the moment

We have enjoyed the past few weeks of recovery and relaxation at home. Carys has gotten on with the business of being a toddler. She’s very busy these days – her favourite toys are her stacking cups, handbags and everyone’s shoes. Although we try to keep our shoes out of sight, she’ll go hunting for them and when she puts them on, she’ll say “por-por shoes” or “Tane shoes,” depending on whose shoes she’s found. So whilst we have been happy to live in the moment of this post-surgery period when everything looks so good, the reality is that it’s not over. We just got a letter notifying us of Carys’s next MIBG test which is scheduled for July 13-14. The MIBG test involves a radioactive isotope injected into her body via her central line and a set of images taken just after injection, and again 24 hours after injection. The radioactive dye is taken up by neuroblastoma cells, and so will show up on the images. The dye is also taken up by the thyroid gland, so we need to give Carys iodine 4 days before and 1 day after to protect it. It tastes really bitter, and even mixing with milk or juice doesn’t really mask the taste. Maybe I’ll try ice cream this time! We have also just done another urine test. Neuroblastoma tumours produce certain hormones, so this test will measure the levels of 2 of them. On the first urine test we did, the levels of these 2 hormones were grossly elevated, so we hope the levels have gone down now. Actually ‘catching’ the wee was an exercise in patience and perseverance! At the end of the day, I only managed to fill the sample tube with about 2cm of wee. We need to do this every 3 months, so any tips from people who have experience with this would be greatly appreciated! Our next appointment with Lisa is on Tuesday 22nd, so hopefully we will have the results of the urine test then, as well as the further pathology tests on the tumour that the surgeons removed.
The grandmother of a little nb angel recently gave me the advice to live in the moment, as she was taught by her granddaughter. It may be a cliché, but it’s so very hard to do. Whilst we cherish every moment with our kids, laugh at their little quirks and love everything about them, there is always that background fear of relapse for Carys. Although the drs are all really pleased with her progress, they can’t guarantee that she will be completely fine. I have been reading more about nb, now that I can do so without getting too emotional, but it’s still really hard. In most cases, a relapse has a very poor outcome. So much more research is needed for this disease to help the little nb fighters. To find out about one program being run out of the RCH, take a look at http://www.yamsfoundation.org.au/