So much has happened since the last update, that it is difficult to know quite where to start. Skye was discharged from hospital on Friday the 4th of April and after a few days of adjusting, life has seemed pretty normal. The 3am and 6am alarm clocks to administer meds are standard and the days are filled with activities to keep Skye entertained. His lack of mobility means that he is confined to the corner of the settee for the most part, from where he can make his frequent demands.
Sally has been arranging a number of play dates with his friends, and despite the risks involved in picking up bugs, these are invaluable for Skye in allowing him to build his confidence amongst peers. It has been instrumental in forcing him to be more active and mobile. The 7+ weeks in hospital left his legs incredibly weak and standing to support his own weight is just starting to come back.
Jesse has come up with some pearls of wisdom. He is incredibly chatty and spontaneously said to Sally, "Thank you for coming back to Abingdon!". When Skye announces that he needs a wee, Jesse dashes off to fetch a wee pot for him, and seeing the two of them interacting so positively, is heartening. Unfortunately, Skye has lost complete control of his bowels, and we are hoping that this will come back, but for now it remains a management issue that we need to deal with. The positive thing is, that they are working, and we move forward from there.
Yesterday morning Jesse was chatting to himself, saying 'if Skye is sick, then he must go to the hospital, then we can see Alice at the hospital and we can see Natalie at the hospital and I must go to Granny's house' etc. It is touching to know that at age two and a half he understands so much. Sally has been frenetically busying herself about the house, re-orientating herself and knowing that this precious time at home will evaporate all too quickly before it starts all over again.
Skye is as good in himself, as he has been since the start of treatment 7 months ago and to have him smiling and laughing and interacting with us has been a delight. His home coming was timed perfectly with my Easter break from school, giving us all a chance to re-adjust. It has been a real treat, with us all being at home. Pollen and dust has been a real issue with no eye lashes to protect his eyes, they are vulnerable but there is a positive sign of these just starting to reappear, but this exacerbates the itchy eyes.
We squeezed in a visit to the Theatre to see Dinosaur Zoo. Great fun and Skye got to go on the stage and stroke the dinosaurs. We have a real sense of calm at the moment as we have no decisions to make in terms of treatment. The next step is accepted as another dose of Thiotepa with all its evils, but for now it is all about gaining strength for this next session at the end of May.