Day T-5. Scary how fast this conditioning is going, almost been at GOSH a week! Today was the day when the medicines stepped up, from one mild chemo to two chemo drugs and the ATG that is to help prevent rejection of the donor cells. It was literally going to be one iv after another with no idea how Herbie might react. We started the day, as is now the norm ,with our checklist of things to. First new thing to add to the list was putting on plastic aprons, part of our new daily attire from today onwards. Rather fetching! Thankfully we don’t have to sleep in them.
Herbie was in excellent spirits and still had a good appetite. During the night he had ‘scored’ as his BP and heart rate were very low. However as soon as he woke his heart rate & BP returned to normal!
We had lots of meds to get through today. Rekha was our nurse and she was on the go all day! The first chemo was put up early, the same one as we had had before. Then it was time for the new one that could cause fitting. We were quite anxious as it began to infuse but it seemed to go well
We waited for Lily, Kitty & Rufus to arrive , we were all very excited!
It was so lovely to see my other 3 lovelies faces smiling through the viewing window and hear their voices through the intercom but even better when I finally got proper hugs and kisses.
We took the children to the cafe downstairs with Chris & Alison but we took it in turns to go as Herbie was having the chemo that may cause fits and we didn’t want to leave him.
When it was time to say goodbye there were lots of sad faces, a few tears and the realisation that we still had a long way to go before we were all home together again.
The sad thing was that when we took the selfie shown above Herb cried that he couldn’t be in it.
They all left for home and once again we were isolated.
The iv’s that began at 10am this morning continued back to back throughout the day and into the evening. When the kids and grandparents came they came bearing gifts for Herbie and us. Brownies, moshi mash up cards, moshi monopoly and other goodies filled the room and Herbie and I sat together to share a letter from Hope and another from auntie Lucy.
Herbie ate well all day & finally fell asleep on my bed around 8pm. His iv’s were still going. We weighed him for a second time, 20.6kg, did his 4th mouth care of the day and got him into bed. The ATG, which runs over 8 hours and kills off the lymphocytes is just alarming to say it is done now at 11.44pm and then he has a 3 hour and another 2 hour iv to go! It’s not going to be a peaceful night tonight! That said Herbs is totally crashed out!
I’m ready for T-4 but also anxious about what it has in store.
I must finish with a line or two about a sweet thing that happened this afternoon. The man I mentioned that we chatted to yesterday about his son, from Fox Ward, came with a moshi monster mega blocks set that his son had, unopened at home. His son is now into Lego so he gave it to Herbie. How lovely is that? Dan and Herbie enjoyed putting it together xxx
Living with NEMO 
Hello Herbie, we are glad you got Hope’s letter and that it made you smile. That Moshi monopoly looks good fun xxxx
Hi Emily….. you guys are very much in our thoughts, sending you an extra dose of patience and energy – xxxx