Chloe Ingrey-Smith

The first part of Ellis’ reassessments A urine drop-off to the Marsden, which will then be sent to Great Ormond Street Hospital to check his catecholamines. Neuroblastoma cells can produce these chemicals, which are then broken down and passed into the urine, so measuring their metabolites is one of the ways his team can look for any signs of disease activity. It feels like such a small thing, dropping off a little pot of wee but this should mark the beginning of the reassessments that signal the end of treatment for Ellis. 3 years and 3 months since he started treatment His MIBG scans have been pushed back to mid-November, so I’ll update properly once we have all of his results back. Neuroblastoma and everything that has come with it will always be a part of Ellis’ life, and I will forever be so incredibly proud of him and the resilience he has shown throughout all of this. It has taught us more than I could ever put into words. But it will not define him. He is so much more than what he has been through, and I cannot wait to watch him grow into everything that comes next

Ellis turned 5! Our bravest boy is FIVE. It’s hard to believe that this time of year also marks almost three years since Ellis was diagnosed with high-risk neuroblastoma. When we look back at everything he has been through, and how far he has come, it’s quite overwhelming. This summer has been jam-packed with family time, adventures and so much fun — all the things that, three summers ago, we could only have dreamed of doing together. We never take these moments for granted. Ellis continues to take his maintenance drug, DFMO, every day and will remain on it until the end of October. After that, he will undergo further reassessments and scans which we desperately hope will mark the end of three very long years of treatment. It feels like such a huge milestone is finally within touching distance. After everything our little boy has endured, we are so incredibly proud of him. We will, of course, keep you all updated as we reach this next chapter. Here’s to FIVE, making memories, and hopefully reaching the end of treatment very soon. ️

Christmas Fundraiser for the Royal Marsden Children’s Unit Two years ago, I set up a little Christmas fundraiser to buy some new push-along cars for the children’s unit at The Royal Marsden. This Christmas, I’d love to do the same again. Every hospital we’ve been in, Ellis has always been happiest here — the facilities and the staff make it such a special place. He was never a prisoner here; he could roam around the playroom, and we’d walk him up and down the corridors for hours in those little cars while he was hooked up to chemo or drips. Towards the end of his 15 months of treatment, we had to isolate in a room while Ellis was permanently attached to a syringe driver. I nearly lost my mind at the thought of keeping a three-year-old contained in four walls 24 hours a day. One of the lovely play specialists, Sarah, saw how upset we both were. She knew how much Ellis loved playing with the toy kitchen — so she brought in a whole kitchen set for him to play with, and it stayed with us for the duration of that stay. It made the hardest days just a little easier, and I’ll always be so grateful for that kindness. Over the last two years, Ellis has spent half of his life here. He’s one of many children who will call this place home for Christmas. I’ve spoken with Sarah, and she’s shared a little wishlist for the ward — including wiggle cars, bumper cars, PS4 controllers, and a play car garage. I would love to reach our target to make sure every item on that list is fulfilled for the children and families spending Christmas in hospital this year. I’ll keep everyone updated with photos of the new deliveries so you can all see the difference your generosity makes. Please share if you can — and from all of us as a family, thank you ❤️