A big improvement in the first week!

7th June 2019, COPADAM DAY -1 – Progress scan day.

It’s been a happy couple of days. Well I say happy, as happy as you can be when your child has cancer. Maybe hopeful is a better word to use.

The fluid has reduced, an x-ray has confirmed this, and also he is completely off of the oxygen and hasn’t needed another nebuliser. He has seemed overall a lot happier and has started eating again (he stopped eating gradually in the month before we got admitted, and eventually stopped completely). By the 5th day we had been in Great Ormond Street he was feeling more well than I’d seen him in weeks, months even. He was enjoying eating and last night after being in bed all week poorly, he asked if he could go out of the room. We went for a little walk up the corridor and he found a ride on tractor which he rode round and round the ward excitedly. My heart actually burst to see him so happy and full of life. I hadn’t seen him himself in so long and here he was looking and acting so much like normal Artie. For anyone that already knows Artie, he is a non stop boy, constantly climbing, running, outdoorsy, so for him to be wanting to sleep and do nothing was so concerning. It was so nice to see him enjoying himself on the tractor, it made me smile so much.

His weight has been reducing but we had been expecting this and we have a fantastic Dietician, Breeana on hand at Gosh, helping us to make sure Artie is getting everything he needs nutrition wise. He has been eating better but not drinking much. We had been putting some special milk in his feed tube to help bump up his vitamins and calories although Artie was really struggling with it and just screamed and cried the whole time, we were having to try and sneak it down when he was asleep but he was so sensitive to the NG tube it was hard to use. He looks pale and has really dark rings under the eyes but we are keeping an eye on it.

Today we had our progress scans. Artie had to be put under general anaesthetic so that they could do a proper MRI scan. It takes about 45 mins or so I think and he would never have kept still for that given how stressful the CT scan was so the consultant said would be best to put him under anaesthetic so they could get a clear scan first time.

After the scan, the consultant came to see us and explained that there had been a 50% reduction in the tumour size in the pre phase week. This is exactly the news we were hoping for. This meant he was classed as a “High Responder” and they reduced his chemo plan from 6 cycles, to 4 cycles. This was great news right? It was probably the first time I had felt some kind of relief and some hope that Artie could beat this.

Artie had some visitors this week from a company called Spread A Smile. A fantastic magician came to see him and Artie was absolutely mesmerised. He absolutely loves magic and it really cheered him up after being stuck in the hospital all week. He also got a visit from Cat Boy and Owlette from PJ Masks which delighted him. Friends sent him a parcel of goodies so he had had some things to keep him busy and play with too. My friend Chrissy sent me dinner up with Paul, it was easily the nicest thing I’d eaten all week, I needed it.

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