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

People stare

‘What’s wrong with that kid Mummy?’

It’s the bald head – that’s the giveaway.

When we walk around the park, people stare at her. Then they either work it out and give a prolonged, sad look or they don’t work it out and continue to walk by perplexed. It’s worse when her NG tube is in.

I don’t like it.

Park time

We spent time today out and about and playing at home. In between, I tried to catch up with a lot of admin I have missed. Jasmine has a lot of appointments to catch up with. Daya now has an additional number of appointments this week and next week which will require her to be nil by mouth and under sedation. I’m utterly exhausted physically and emotionally. Mentally I’m still ticking over fine.

Daya fed the birds today. All the kids slept at different times which meant there was no downtime. Daya is awake most nights.

She’s tired still and moves slowly. Shes not on full form yet. Jasmine is enjoying having Daya back.

Anaya is a great big sister.

Our medical teams

We have a large team surrounding us.

Our main hospital for treatment of this cancer is Great Ormond Street Hospital for Children.

Our local hospital for Daya’s care is North Middlesex Hospital.

We are enormously thankful to them. We have been thankful for years. However, my mother once said, ‘to truly know a person, you need to live with them’. We have now lived with them.

We have lived at North Mid for months and months. When I say ‘lived’, it is no exaggeration. We have lived there, slept on pull out beds, stayed in isolation in our room for weeks at a time, and when allowed, we have walked the cold corridors in the basement to avoid crowded areas, walked the grounds and showered quickly during nap times. We have sat with nurses during sleepless nights and painted over fluid charts and note papers.

We know them. We have know them for five years. Each child has experienced inpatient stays for a variety of reasons. However, nothing prepared us for what Daya’s post chemotherapy body would endure. All three babies have stayed in the neonatal unit due to being born early and on the short term inpatient wards.

We have run into this hospital with a shaking baby, with a fever of over 40, at 2am in the morning, and they have stepped up. And we have done this many times. Chemotherapy wipes the body and leaves her neutropenic. It destroys her immune system and it is hard for her to fight infections. She has had infections in her gut, in her Hickman Line and relentless viral infections over winter. Basically, the entire time she’s been having her 8 rounds of chemotherapy. She had a stem cell transplant after her 9th round (High dose chemotherapy) so her neutrophil count recovery was quicker.

During this time we have been looked after by lots of people at these hospitals; doctors, nurses, HCAs, dieticians, pharmacists, scanners, radiographers, cardiologists, audiologist, anaesthetists, play-workers, porters, housekeeping, cleaners etc. The list goes on. We are thankful for all the excellent work from our team. Words such as ‘thank you’ are inadequate but we are thankful.

Our cleaning lady would come in everyday. She would dance to our music. We have played music to Daya and danced around the room to keep her happy. We have done this a lot. The cleaning lady would join in and had some great moves. Our nurses have danced along too.

Our housekeeping teams always kept the laundry clean, extra pillows(!) and the food on time. They’d also check in to see if we were eating properly.

Our HCAs and nurses have been essential to our day-to-day management and care. They have a lot of love for Daya. They miss us when we aren’t there – although we all know it’s better when we aren’t there and are busy playing at home. We miss them too.

Some have left us – maternity leave, travelling, more travelling, moving to Switzerland for ‘true-love’ or moving to a different hospital.

An excellent nurse is worth her weight in gold.

In fact, an excellent Nurse is priceless. We have a code name for our nurses at North Mid – ‘ the big guns’. If ever you wanted a bunch of nurses on your team this is the place to come. In short, they get stuff done. They are communicative and responsive. They love their profession. They are funny and caring. They are invested in their patients and enjoy building relationships. Over time we have got to know them all. They are precious to us. They don’t just do a job. You can’t be a doctor or a nurse and ‘just do the job’ – firstly, it shows that you don’t give a shit and secondly you wouldn’t last long. This profession requires a degree of excellence and self ambition. What the doctors and nurses do is not accidental.

Our doctors, at all levels, some of whom have had steep learning curves, have worked hard to ensure they are coming back with the right answers, plans and progress.

They are attached to and invested in her care. It’s hard for them. They want to see her do well and survive. These are human beings with expertise, not god-like mythical creatures. They are humans with their own hopes, dreams, kids…it’s not easy for them. They are wonderful. Communication is everything.

Some of our doctors and nurses have seen us go through so much over the years, the enormity of our situation is …it is unfathomable to them. Their support has been invaluable.

I ask a lot of questions. I try to keep on top of things. They help us to get her better quickly, to return home and to enjoy as much time at home as possible.

They stay dutiful and professional. They put their own emotions aside to stay focussed on outcomes.

Our feelings are the same towards our doctors and nurses at GOSH who are wonderful. They are our frontline treatment centre. Our process there is to follow a regime as part of our treatment plan. The process is structured around phases and next steps. Unforeseen issues are dealt with quickly, for example when we were inpatients, and she spiked fevers for an entire week, we were rushed to X-rays,ct-scans, echos etc. Our medical staff there are fantastic. They are supportive and proactive. They are intricately woven into the fabric of each phase. The harsh reality is that in their specialism, they see many children die and they relentlessly strive everyday to save the lives of the children that come in. It can sometimes be a heart breaking place to do a shift. And at the end of the shift, they walk back out into the real world, a world that doesn’t know the loses and difficulties they see. They are heroes for us.

They have also been teaching Daya all sorts of phrases: Hiya, where’s she gone?, cup of tea, arm up, arm down, bath, Daya fix it, temperature, high five, get out, let’s go, home, you’re welcome, sit up, lay down, wipe….and she can say their names which gets them very excited.

Here are some images from our final days of high dose chemo and the day we were leaving to come home. We didn’t get to take pictures of all the nurses. We missed a few. We love them. Good people turn a bad situation into something that is easier to manage. This is love.

They are so full of fun and enthusiasm.

We couldn’t do this without them. We are thankful for their unwavering support.

Daya lighter vs Daya darker

So a few people have been asking why Daya looks so much darker than she did before she went in for treatment.

Her skin has become significantly darker during and after this round of chemotherapy. High dose chemotherapy does that to you. Her nails have also blackened in places where the cells have been killed off. She has lots of black marks and tiny dried blisters on her skin. She also has a lot of scratch marks on her skin, mainly her chest and legs. There are random black circles and marks across her skin from her head to the soles of her feet. She hasn’t been sitting in the sun getting sun burnt. Don’t worry. It happens it’s normal.

She walked

One small step for Jasmine. One giant leap in my heart.

Miss Wibbly-Wobbly stood up and walked. She walked.

She also said bye to a trio of OAPs in the park. She’s always smiling and interacting with people. She’s a delicate, strong, formidable force of nature.

She stopped. Stood with support. She loved feeling the wind against her body. She was laughing. She is overjoyed with herself. She has no idea how far she has come.

‘Your daughter won’t sit until she’s 2 or 3 and she won’t walk until she’s 6-7 at the earliest’.

These words keep going around in my head. I know they were said but Jasmine makes me doubt myself over and over again. She makes me doubt that I heard those words. Those words don’t leave me.

If ever someone told you that you couldn’t do something, remember Jasmine. No one told her anything. She’s just doing it and is overjoyed with her new found strength.

When I came home from the hospital, she walked 2-3 steps towards me. I couldn’t believe it.

She is unstable, she is very quick and unsteady, and she can’t correct herself. BUT she is formidable. She is up and going places. She has bumped her head a few times and hits door frames often.

There is joy and there is pain. You can’t deny either and you can’t hide from either. Joy you can find anywhere. Pain is something you can’t hide from.

I hope this post makes you smile. I hope this post lets you know that we are all capable of great things however small they may seem.

This is love. We never gave up on Jasmine. We never sat back. We never relaxed or accepted those words. We never doubted you. We never stopped playing and supporting you. I’ll be your backbone until you can stand. I’ll hold your hand until you want to let go.

Just know that as your mother I will stalk you like crazy with hidden GPS tracking if you ever leave me. Your cochlear implants have a ‘find me’ function. But seriously, I’m proud of you.

You’re a delightful and engaging little person. You are always fun and friendly with everyone. Always full of life and love.

Don’t ever let anyone tell you that you can’t do something. My kid has already proved all your doubters wrong. It’s time for you too to do something difficult and outside of your comfort zone. Do something that challenges you and makes your proud. And make sure you report back. Keep growing.

With love,

Pam

We came home

We came home last Friday and it has been tiring. I haven’t been able to write as I’ve been lacking in sleep, unpacking, organising feeding kits and medical stuff and being held hostage by the kids.

I have slept about 2-3 hours broken up every night. This is due to Daya’s irritability, itching and vomiting.

Coming home was an adjustment. I had sensory overload. I haven’t been out of the house except to the park, and only once. We play in the garden. I’m physically exhausted due to lack of sleep and it’s been too hot.

But we are home. She’s happy. The environment is better for her. She is improving.

Her chemotherapy is causing some side effects.

She is often wide awake all night.

But we are home. She is smiling.

Watching Jasmine and Daya interact is wonderful. Watching them both engage with Anaya makes me smile. They are older and more and more interactive. Daya is talking.

Jasmine likes having her pram buddy back. She’s back with her ‘wabbit toy’. She is where she belongs.

They have all been clingy and demanding. That was to be expected. It’s an adjustment for everyone.

So now we are on Project fatten-up Daya. She’s on a Milk pump, has her NG tube and is eating a little bit.

Project Jasmine is based on her speaking and physical development.

Project Anaya is keeping her busy and entertained over summer.

Parenthood. Never a minute off.