Today is brief.
Today I entertained. Sang songs in the car. Knew all the words to Barry White and Rihanna. Today I danced around (with moon boot) the cubicle. Today daddy cracked jokes at my expense. Today daddy cried. I was too tired to cry.
Woke up 4am. Went to our local hospital sorted out meds and bags and supplies and headed down to our specialist Hospital driving the long way round so Booboo could nap.
The nurses are wonderful. They look after us and send us off on our merry way. And we are greeted with big smiles and hugs when we came back.
It’s been a long day. MIBG scan to show the extent to which the cancer has spread in the bones and around the body. We need to see if and how much the cancer has shrunk or spread. You may recall the chemo so far hasn’t worked as well as they would have liked it to. If you are black and white on such matters then it’s not working. The cancer is sitting there living existing and perhaps trying to grow and spread. She has an aggressive and difficult cancer.
She vomited after the scan. They forgot to give her anti sickness meds. The scan was about 3 hours long. So daddy and I had a date for lunch. Too tired to talk but we cracked some jokes. He did some work and I people watched. I was a bit hyperactive today due to coffee. Got lots done because we have to. Daddy even managed to do some work. We lost booboos fluffy hat with ears! It’s freezing outside. Must find gloves to function during the early hours.
In recovery, Daddy scooped her up and had a cosy cuddle. He cried. This man who has never cried, now cries and when he holds her he knows that each moment could be closer to the end. We desperately want her to live. This scan wasn’t positive enough last time. Watching them sitting there together it’s hard to know where one ends and the other begins. These two are thick as thieves – always up to mischief when they are together. He always makes h r laugh. Coming round from GA is difficult for babies. They feel confused and disorientated. They cry a lot. Today she was quiet. Worryingly so. The anesthetist was surprised at how many times she has been under in the last two months.
It’s days like this that you want to be filled with hope.