Dylan had a blood and platelet transfusion today, along with a potassium infusion, so hopefully he will feel a bit better soon and have a little more energy. I will also start him on oral magnesium and potassium suppliments. He is still not eating well and has lost 2kg since December. I am feeling pretty bummed out today, I think because I feel like I have no direction at this point. The doctors are meeting tomorrow and will hopefully give us some options for future therapy. I have always had the 3F8 therapy to strive for and now that he is HAMA positive, I feel a little lost. The results of the tests have come back with his urine markers slightly elevated compared to the last test done in November. HVA is now 38 (it was 29) and VMA is now 34 (it was 28) I don’t think this is a huge cause for alarm though, the test was sprung on us when he was inpatient and he did not prepare by avoiding the foods that can affect the results, he also lost one collection during the 12 hours. As for the MIBG scan, it basically remains unchanged except that there is interval prominence of the lesion in the left proximal femur and left pelvis. What does this mean? It just looks brighter in the scan. It is also nothing to be hugely alarmed about. The CT scan was also unchanged, except…there is always an except! It shows fluid from where the mediport was removed, which is normal but it also shows some confusing punctuate parenchymal opacity in the right and left lower lobe. What does that mean? I am not too sure to be honest, I think it’s kind of like very tiny blood vessel spots in the lungs. The cause is unknown, but possibly from a recent infection. Hopefully that’s all it is. So again, we are just re-charging the batteries so to speak and will wait for a plan to be offered by the team. There is a wonderful activity at RMDH this evening, hopefully Dylan will feel better and come out of his hiding shell to socialize this evening.
