Today marks 2 years since Dylan’s diagnosis and also 18 months since our arrival in New York. I thought I would be sad today but actually I am happy. I am so grateful that Dylan is still alive 2 years after diagnosis, so thankful we made it to New York for treatment. All this is an achievement, and it’s an achievement I could not do on my own. This is all possible because of the kindness of strangers, I don’t like using the word strangers, because really you are all friends. Thank you all for helping us to achieve everything possible so far. Treatment is going well, Dylan feels great, we spent 9 hours in clinic yesterday having potassium and magnesium infusions and then the arsenic infusion. The research scan was also done, this is purely for research purposes and tells us nothing about Dylan’s disease. I think the scan was to see how much radiation and MIBG isotope remains in his body. Today again, despite eating 3 bananas last night, Dylan needed more potassium and magnesium infusions. He is very well though, spending most of the day in the PDH playroom playing games and making pizza. His counts are still good, but the platelets and hemoglobin counts are dropping slightly.
