Thursday was a pretty full on day with plenty of new stuff to take on board. Celia was pretty tired and lethargic at times but positive on the whole.
Spent the morning enjoying some quality 'dad time' playing matching pairs with her favourite Dora cards, having a coffee in the autumn sunshine and even playing outside for half an hour (all with the ever-present drip in tow). Had a few more tears getting blood samples - they had to do it twice as the first sample didn't work. That is the umpteenth time this happened. She is definitely getting braver on the pin pricks now though. In the morning I also learned about the latest addition to her daytime drugs cocktail - two separate oral hygiene drugs (basically mouthwash) to be taken four times a day for the foreseeable future. Infection of the mouth is important to avoid as we are so dependent on having her able to keep swallowing tablets etc.
Her appetite is still pretty low so she was very tired by 12.00 and had a big two-hour nap at lunchtime allowing Lydia and I to have the luxury of a lunch together and time to chat in the excellent family centre (Ronald McDonald) which is basically an area for families of sick children to chill out and relax, have a shower, a snooze, cup of tea etc. This is a volunteer run centre and a really excellent facility. I just wish it stayed open past 9.30pm as it would be a great place for adults to relax once the children are asleep in the evening.
After lunch we had a tour of the children's cancer centre which is the outpatients facility that Celia will visit weekly from next week to have her various ongoing treatment. In all likelihood Lydia, Max and Mabel will spend most of each Wednesday there on an ongoing basis. It is well laid out and equipped with play areas and outdoor space but I imagine will be pretty crowded on a typical day.
We had a long chat with Kate, who is our nurse in that area and learned the outpatients process.
Later in the afternoon we learned that Celia's latest blood test showed a very low red cells blood count (a sign of anaemia) and that she needed a blood transfusion. This is fairly common apparently and will probably happen several times in the coming weeks. They didn't have the right blood available today (remember to give blood regularly everyone) so it is scheduled for Friday morning. It certainly explains her tiredness today.
Despite feeling a bit weak Celia was able to end the day making clay models and painting them with mum while I managed to escape to feed, bath and bed Mabel and Max and even catch up with my 5-a-side team to lend my vocal support in the second half of a narrow 12-6 defeat. (P3, W0, L3, F12, A28)
Spent the morning enjoying some quality 'dad time' playing matching pairs with her favourite Dora cards, having a coffee in the autumn sunshine and even playing outside for half an hour (all with the ever-present drip in tow). Had a few more tears getting blood samples - they had to do it twice as the first sample didn't work. That is the umpteenth time this happened. She is definitely getting braver on the pin pricks now though. In the morning I also learned about the latest addition to her daytime drugs cocktail - two separate oral hygiene drugs (basically mouthwash) to be taken four times a day for the foreseeable future. Infection of the mouth is important to avoid as we are so dependent on having her able to keep swallowing tablets etc.
Her appetite is still pretty low so she was very tired by 12.00 and had a big two-hour nap at lunchtime allowing Lydia and I to have the luxury of a lunch together and time to chat in the excellent family centre (Ronald McDonald) which is basically an area for families of sick children to chill out and relax, have a shower, a snooze, cup of tea etc. This is a volunteer run centre and a really excellent facility. I just wish it stayed open past 9.30pm as it would be a great place for adults to relax once the children are asleep in the evening.
After lunch we had a tour of the children's cancer centre which is the outpatients facility that Celia will visit weekly from next week to have her various ongoing treatment. In all likelihood Lydia, Max and Mabel will spend most of each Wednesday there on an ongoing basis. It is well laid out and equipped with play areas and outdoor space but I imagine will be pretty crowded on a typical day.
We had a long chat with Kate, who is our nurse in that area and learned the outpatients process.
Later in the afternoon we learned that Celia's latest blood test showed a very low red cells blood count (a sign of anaemia) and that she needed a blood transfusion. This is fairly common apparently and will probably happen several times in the coming weeks. They didn't have the right blood available today (remember to give blood regularly everyone) so it is scheduled for Friday morning. It certainly explains her tiredness today.
Despite feeling a bit weak Celia was able to end the day making clay models and painting them with mum while I managed to escape to feed, bath and bed Mabel and Max and even catch up with my 5-a-side team to lend my vocal support in the second half of a narrow 12-6 defeat. (P3, W0, L3, F12, A28)
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