We have had a lovely week being back at home with Dylan so far. We went to a wedding at the weekend which was a nice break and the boys didn't stop dancing together which was adorable!! There was a photo booth too which was lots of fun!
Yesterday he went to the QMC for two types of chemotherapy and he is having three more days worth of one of the drugs this week given at home before a two week break. This is likely his protocol now until September at least when it will be reviewed. The doctors are happy with how he is doing which is good.
Make A Wish also came out to see Dylan last night and in typical Dylan fashion he was very uncooperative! When asked what he would like his response was.. "I'm busy" and when they asked about one of his drawings (of a computer tablet) in his booklet he said it was a "rectangle" in such a manner! Obviously he was right as it was the shape of a rectangle but they wanted to know what it was supposed to be, not what shape!! They left a bit clueless as to what he really wanted for his wish so we wrote down a few different options based on his likes and dislikes, and have to now wait for a decision back.
Today we attended our second week back at Little Nippers playgroup which Dylan really enjoyed. It isn't on next week because of half term but we hope he can continue attending afterwards until they break up for the summer and he starts nursery in September.
As of 4pm today we have now reached five whole weeks with no chest drains which is fantastic progress, and this is now officially his longest stay at home without readmission since Christmas Day!
Every day we are starting to relax a bit more but still find ourselves checking him over when he gets a bit breathless from playing or gets upset in case it's a sign of a lung collapse. We are also checking his temperature regularly to make sure he doesn't get any infections. Each day is a challenge in it's own way, particularly emotionally as we try to regain "normality" without forgetting how serious his illness is and how little could tip him back over the edge again. We cling to the hope that he is getting stronger by the day but until he eventually has another CT scan (which bring their own risks so won't be done any time soon) we have no real way of knowing how his lungs are reacting to the chemotherapy..
The boys are loving being back together though and Dylan has come on so well with his walking and strength since being back at home. He still has his odds wobbles and gets upset and asks to go back to the hospital but hopefully that will pass. He is still holding his breath when he has a tantrum too but his lung capacity does seem to have increased now so he copes with this a lot better than previously. His wheelchair is finally getting delivered tomorrow which ironically he barely needs now but it will come in handy for long trips out and rushed school runs in the morning.
He had his hair cut this afternoon with Bryce and Daddy.. it was time to try and blend in where it is thinning out in places and fix the hack job Mummy did of the back and fringe in the hospital. He looks very grown up and it hides the slightly thinner patches very well. Hopefully now his chemotherapy has changed onto 'maintenance' rather than intensive that will be it for the hair loss, but in the grand scheme of things it really doesn't matter about a bit of hair!
I love having him at home, I'm just a nervous wreck!!
No comments:
Post a Comment