Today is the day we leave for New York. Daya is packed. We are leaving everyone else at home so that life continues with as much stability and normality as possible.
It was hard leaving them behind. Anaya, who has been brave and strong all the way through, was in tears until a Daddy cuddle (because, as I later found out, he had promised her a toy!). Jasmine is missing us terribly. They will be having busy over the next few weeks which should keep their minds of us.
Daya woke up very early and was a bit confused by the departure. My ‘grandchild’ has joined us on the trip. Daddy has come to drop us off and will be heading home soon.
Thumbs up from Daya.
Daya was excellent on the flight over. Our cabin was overbooked so a few of us were bumped up.
Daya was great. She had a lot of fun. She didn’t cry. She was excited. It was difficult for the crew as they have young kids in their lives. One older chap, a passenger came over and said ‘she’s a great kid, I’ve got five grandkids and then he started to cry so he walked off…’.
We are so used to the normality of how Daya looks. We spend our time at hospitals or at home. We have been living at hospitals. She doesn’t even go to the supermarket. The only place she goes to is the park. This was the first time we were out with her anywhere other than hospitals. It was a little bit difficult at times. A lot of people looked at her or really stared hard whilst submerged in their own thoughts. Luckily she didn’t notice. She had a lot of fun and fell asleep eventually.
Daya has settled in nicely. She’s still up to her cute antics. It’s muggy and warm here. Humid and around 23 degrees. We are trying to catch up on sleep. She’s been feeding me grapes at 2am. We are restricted by what we can do out here as we don’t want her to be in crowded places and pick up an infection, especially before the operation.
I’ve had jet lag as I didn’t sleep on the plane or at any of the right times. Instead we have stayed up listening and watching her favourite tunes on the iPad.
Her greatest hits collection currently includes,
1. Maroon 5 – Girls like you. This was also our high dose chemo song and is now a regular nightly fix. She was happy when it was playing in the taxi on the way to the airport. I know all the words. So does our Nurse Katie (from Giraffe Ward).
2. Drake – nice for what. Let’s stick to the basic fact that it has a good beat!
3. The Baby Shark anthem
4. James Bay – wild love
5. Daddy finger, daddy finger (featuring mummy, Anaya, Jasmine, Max and Nani)
Here we are on the iPad at 3am. It’s been tiring.
This isn’t a holiday (we haven’t had one of those in years). The trip hasn’t started with the usual excitement of a holiday. I’ve had a mixture of emotions, in my head and my heart, all the way through. I know this is the right thing to be doing. I know it is high risk surgery. I know we are coming to the best. I know we want it to go very well. Hopes and fears quietly exist at the same time. I know I’m scared. I had to fight back tears for most of our journey. I nearly cried at Check-in when I looked at Daddy and just nodded and said ‘….we are doing this’.
I’m grateful to each and every person out there who has supported us in any and every way possible. Im grateful that we are in a position where we can come and do this in the first place. Not being able to do this would have meant a much reduced chance of survival in what is already a very difficult cancer to beat. We have lost four children that we have met along the way. I’m grateful to everyone. I always will be. I hope the surgeon gets it all out.
We are in a privileged position to be able to do this, with love and support, and will stay calm and focussed. The worst is yet to come. We have pre-assessments, the operation and then intensive care.