All in all things are going great for Ethan! He has put on weight, his skin colour has returned, his eyes are sparkly again and he has lots of hair! He loves his hair. It has grown back lighter and straighter than what it was previously which he is very pleased with! He has more energy and is generally healthier and happier. Ethan’s eyes (which had become crossed and given him blurry vision) have gone back to normal. We waited several hours the other week for the ophthalmologist to officially tell us his eyesight is back on track. We will have another appointment with them the month after we finish chemo to make sure there are no lingering affects.
This week he started full doses of chemo again. We were meant to start last Thursday but his blood counts were too low due to a little cough he picked up. So we went back to try again on Tuesday. After being there for 5 hours we were told that one of the two drugs he was meant to get had actually expired! They had ordered it to give to him last week and had saved it for him. It since expired. It was too late in the day for them to get a new one ordered from the pharmacy. So he got his dose of vincristine (this is the chemo drug that caused his eye problems so they only gave him a 75% dose of that this week but will return to 100% doses next time). Thankfully the other drug he received this week was the really low dose drug (he alternates between this one and one other – the other one takes 3 1/2 hours to drip into him) and so after waiting all that time the lovely staff arranged for a nurse to come to our home yesterday afternoon to give Ethan his 2nd chemo drug here in our kitchen. So he went to school for the morning and then came home at lunch time for his medicine.
The chemo has had some of the same not so pleasant side affects. I won’t detail these as some things are embarrassing and don’t need to be mentioned. However to the outside world he is hardly being affected at all! He had to take the anti nausea medicine today as he felt ill but once the tablet kicked in he got dressed in his uniform and went to school (well it did take some persuading). He has been going to school on and off (thankfully he has an AMAZING teacher and sometimes she is the only reason he goes). He calls me when he is ready to come home. One day he came home and rested for an hour and then went back again. I’ve been going to the school on average 4 times a day, thankfully we live close. He does, however, get really tired from all of this. He uses up all of his energy when he is out and about and then crashes at home. When we push him too far or if he is up too late at night he starts getting quite grumpy and irritable. No matter what room of the house we are in he just lies on the floor next to us.
The biggest difference I found from his dose of chemo yesterday was the quick drop in appetite and change in taste buds. He didn’t eat at all after chemo yesterday. Today his lunchbox came back almost untouched and we had to force him to eat some dinner. After having a couple of months of normal eating today we were back to some random requests – ice blocks and cabonossi or twiggy sticks!
Overall things are going great. If you were to meet Ethan for the first time now you would have to really search to find something different about him. He has kept his humour and wit with him the whole time and often has us laughing at something. We are working on rebuilding his core strength as well as his reflexes.
Last week while driving with the kids Vienna told Luke that she wanted to be a nurse when she grew up. Luke made the comment “that’s wonderful Vienna, then you can help save lives just like the nurses who have helped save Ethan.” Ethan then piped up in quite an astonished voice “Could I have DIED from cancer? I never knew that!” Luke felt guilty about having brought up such a sensitive topic casually in conversation. It also made us realise that we hadn’t discussed more of it with Ethan so that he fully realised or was aware. Maybe we thought we had told him more than what we had or maybe we wrongly assumed he knew more than he did. But if we had our time again I’m not sure we would do anything differently. I’m glad he was able to go some very difficult stages of treatment being positive and not thinking everything was life and death. We didn’t want him to be scared, anxious, worried or stressed so not worrying about his mortal life I think is a good thing!