This week marks a massive change in the Riley household. Madeleine will join older brother Matthew at 'big' school and despite only being 3 for three weeks William will start pre-school. The house will be eerily quiet, I will miss their chatter and banter. Harry will for a time feel like an only child til home time.
One good thing for harry will be the quietness he needs when working with Lynn his visual impairment teacher, and the physio and occ therapist. I am almost 100% certain he has no vision at all in his left eye, thats why its so devastating to find his slightly better right eye started to misbehave 2 visits ago.
I was sure it was just a blip, but yet again as parents we're last to get any correspondence regarding harry and the follow up letter from that appt turned up this week and they stated he has low grade activity and they need to keep a close eye on him. A bit sickening as this means more are likely to grow, I rang to query if this would be the case, and as the growth was following a period of 6m stability they said although it would be great if nothing else grew, they wouldnt rule it out, but probably .
So still uncertain but who knows what agenda cancer works to. I've read stories from fellow rb families whose kiddies had quite long periods of stability before it kicked off again. I hate uncertainty, if its going to happen I'd like to know. Living in the land of 'what-ifs' is torture.
But like everyone else living with cancer we just have to get on with it and force it to become part of your daily life. Despite wishing daily I could swap places with harry, I know that I make him happy, hearing him call mummy and the huge smile I am rewarded with when I pick him up brings a glow to my heart. It still doesnt get rid of the pain knowing Birmingham looms next week and I again have to put him through the nightmare EUA.
Lets hope cancer has seen my angry face and decided to stay hidden again!
I must spare a moment to think about a special little girl called Beth who has just been diagnosed with ALL, acute lymphoblastic leukemia. I have become friends with her mum on twitter, she too writes a brilliant blog. I know she will be well looked after as she is on became ward harry was on in Manchester childrens hospital. I hope her journey to remission and beyond is straightforward and as painless as possible. Massive hugs to beth and her family @-}--
I shall end on a classic Matthew saying. With my hands full feeding harry his lunch, I asked Matthew to pick up a few crisp crumbs William had dropped before they got trampled into the carpet. Fully expecting him to say 'i have to do everythinggggggg' I was surprised when he retorted 'what do you think I am, your personal Hoover' har har.