Daya Amole’s Urgent Appeal – Campaign Video

So, we have made a short clip with a lot of help from some wonderful people.

Please watch and share our video. Our appeal is urgent. We only have weeks to reach our target.  You can donate at http://www.teamdaya.com

You can watch it here:

And if you can’t see it in your browser or phone, please click here: Daya Amole’s Urgent Appeal

Please watch and share. To donate please go to www.teamdaya.com and to read more please visit: Solving Kids Cancer – Daya Amole’s Campaign Page

With love and thanks, #TeamDaya

My best shot

I miss my babies. It is the end of the first week.

We were shown a lot of love today in NY. We aren’t on holiday so everyday is not an exciting adventure and we aren’t settling down either. It’s not work. It’s not play.

We are here. I’m numbing myself to the passing of time in order to get to Monday morning and hand her over. I’m putting all my hopes on this guy. Betting everything on black as they say in Monte Carlo.

We won’t know until it’s done. I’ll know we have given it our best shot. There was nothing more we could have done.

This time last year Daya was under going her first round of chemotherapy. In fact, it had just finished but she was neutropenic and had spiked a fever. Our GOSH team, who were great, had advised us that no matter what, if she spiked a temperature she would need to go to her local hospital for treatment. And so began our stay at our local hospital. So began the journey of over a year of living with our ‘rainbow family’. These doctors, nurses, health care assistants, food ladies, cleaners and everyone else would become our ‘rainbow family’ and our home-away-from-home. Over time, as things evolved, it hurt them in the same way it hurt us because they had looked after all of our kids before Daya was even diagnosed. I think, in hindsight, it was difficult for them to watch not just Daya but also us as parents who were going through so much.

So began our journey. This time last year the twins were split up. They didn’t have their first birthdays together. And this year they are apart again for their second birthdays. It was Nani who turned up for Anaya’s first birthday when Little Anaya had just come out of Hospital. It was nani who turned up with a cake, balloons, a card and a present. And it is Nani who is making a big fuss of Jasmine this year and has ordered us to get a cake for Daya as well. We have no one to share it with. We are hoping by next Friday Daya will be doing ok and that we will get one to share with our medical team out here. Today a cupcake will do the trick.

Next year, my wish is that they are together.

Anaya is missing me. We managed to FaceTime tonight. She called back a few times. I miss her little cheeky smile and funny one liners. I could tell she was feeling our absence today.

I didn’t get to see Jasmine. I know she’s been having fun but she’s missing from me.

Daya watched a recording of Erin reading the Gruffalo.

Daya last year going through her first round of chemotherapy.

18.9.18

Day 1 at Memorial Sloan Kettering in New York

The day started at 515am.

I miss Little Jasmine. When she wants to go to the park she brings the persons shoes to them and signs park.

We headed off for our 8am appointment.

It was a long day for us. Daya was nil by mouth for 13 hours. She had to have a CT scan. We met a lot of people yesterday. All very friendly. It was a busy day. There was a lot of moving around and waiting. Daya did a great job.

We met the fish. Daddy and Daya named them all after family and friends.

We put a SuperDaya sticker up on the board. September is Childhood Cancer Awareness Month internationally. We put one up for Kira too. We played in the kitchen. Did about 8 cycles of laundry on our little Miele washing machine. We cooked some vegetables and used the microwave (again and again!) to warm up Mummy’s cold tea. And Mummy went for a ride on that little yellow ride on. We also played with a lot of other little kids there. Afterwards, Daddy and Daya did some acrobatics between the beds. Daya had her observations done and was terrific. She also has this new ‘hands in pockets’ pose which makes her look very cute and innocent. The doctor found her hilarious. She stood up and put her hands in her pockets too and swayed left to right during the appointment. Daya was very tired. We had a long, hungry wait for the CT scanner.

After which she had her milky and was tired but happy.

We met our surgeon after the scan.

This is the man. This guy walked in and said ‘hey you are a cutie’ and went straight to his toy box, took some little toys out and said ‘hey, welcome’.

This is Daya’s surgeon. This is the surgeon we have come to meet.

He talked us through everything. It’s going to be very, very risky. ‘High risk’ they call it. Nothing beyond that. She could die. She may lose internal body parts. She is likely to have some long term issues. If she shows signs of distress or if it is too dangerous they will close her up.

‘When she is in there …your daughter is my daughter’.

This wonderful lady is our Nurse practitioner. She was playing with Daya and giving Daya’s baby high-fives.

Today was an unusual day but was made easier by the wonderful people we met along the way.

This is very difficult.

 

 

Cuddles

We have been settling in. Booboo and Daddy are one team. I have become the porter. It’s all about Daddy right now. Daya follows him everywhere. I miss JJ and Anaya and everyone and being home. Daya has been very tired.

My grandchild, lion and elephant were all asleep with Daya. Daya had covered her eyes with ‘elephant’ as it was too bright. She’s a funny, lovely little character.

Daddy needed to work so Daya and I went out for a long stroll. We met some horses, went around Central Park, walked to Times Square (Daya wasn’t impressed), spoke to some NYPD ‘cops’ who are fun and friendly, walked down to the Rockefeller building and then we finished up at St Patrick’s cathedral (which was amazing) before heading home to meet Daddy for a late lunch. We walked in a long rectangle!

And that 3 hour walk is about as touristy as we are going to get. That is the beginning and end of our ‘sightseeing’. The hard work starts tomorrow.

Up, up and away

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.

Dressing changes

These are getting harder. She becomes more and more irritable and cranky. Also her skin is very sore and peeling off in patches.

So now the nurse and her chat away about all sorts of things whilst Daya sticks Steri strips over her arms and hands.

This is the last time she’s going to see Daya before the surgery. It was a poignant visit.

They had a tight last cuddle. Daya doesn’t know what is coming. The nurse knows all too well what could happen here. She doesn’t speak of it. She’s looked after all my kids for the last five years.

‘You bring her back home soon. Everything is going to work out fine. You. Bring her back. Soon.’ Then I cried.