Walkie Talkie Sprint for GOSH Oncology Wards

Daya’s Daddy is going to do the Walkie Talkie run where he will sprint 896 steps over 36 floors, to get to the Sky Garden at the very top which has panoramic views of London. He will be raising money for the oncology wards at Great Ormond Street Hospital.  The event is on 29th February 2020  

Why?

Daya has spent over two years and three months under front line treatment for her aggressive cancer. We wouldn’t have got through this without our wonderful nurses at Great Ormond Street. We have lived there for so long in isolation that we know very well how much these children suffer and how much heartache families and nurses face. 

The money raised will be used to improve the lives of the families on the ward through the purchase of equipment, for example portable pain relief equipment packs for children in palliative care. 

So as if their lives weren’t busy enough with long day and night shifts, our hero nurses have decided to use their holiday leave  to climb Mount Kilimanjaro to raise money to purchase this expensive medical equipment for the children they look after. Every nurse on this trip has looked after Daya and she adores them. 

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In February 2020 12 nurses from Lion & Giraffe Ward at Great Ormond Street Hospital will be climbing the world’s tallest free standing mountain, Mount Kilimanjaro. We will be trekking for 7 days through different terrain in order to reach the summit at 5,895m. 

We are taking on this challenge in the hope to raise £50,000 as a team for the children’s haematology & oncology wards at GOSH in which we work.

Many children with cancer have to spend weeks or even months in hospital whilst undergoing gruelling treatment such as chemotherapy, radiotherapy, immunotherapy, surgery and trials. 

Therefore, we want to improve the equipment and facilities that are available on our wards to ensure that the brave children and families that we care for have the most comfortable stay as possible. 

Thank you for reading and your support,

Team Lion & Giraffe xx

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The link is here: https://www.justgiving.com/fundraising/teamdayawalkietalkie2020

Thank you x

The Bionic baby

Jasmine and I went to a cochlear implant mapping session. We had to get there very early. We took bunny too. She spotted our shadows on the floor.

She’s used her hands to create shadows of some BSL signs (snail, mummy snail, crocodile, dinosaur).

It was strange being at a hospital with her. I had to look down at times to remind myself it was her and not Daya.

Our team is wonderful. We always ask for our two favourites. They are great with children but also so inspiring and supportive in our journey.

You have seen them before, Mark and Rachel, who are part of our CI team.

Some people like to hide their CIs and choose a colour to match them against the child’s hair. Ours stand out with a Wonder Woman sticker.

We took some pictures to mark the occasion. During the session Jasmine played games and did certain actions every time she heard a particular sounds. You have to be great with children for this to work well. We established that she has full access to sound. Her speech has developed significantly. Jasmine doesn’t stop talking and singing. She. Doesn’t. Stop. She also talks in her sleep! We love it. She talks to her sisters which is wonderful to watch.

I don’t deny that my child is a ‘Deaf’ child, but she is an implanted child. I wouldn’t change that. It was a difficult decision to make. I can’t drive without my glasses. She can’t hear without her implants. It was as simple as that for me in the end. I wasn’t ever going to deny her an opportunity to hear if it was at all possible. Not every implanted child gets to hear; you don’t know until you try. So far, we have got lucky in this respect.

Without her CIs, Jasmine cannot hear a sound. She wouldn’t hear a plane talking off next to her. She wouldn’t hear you call her name. With the CIs she has become our bionic baby. She can hear better than your average adult. It’s amazing and we got lucky that her auditory nerve works. You don’t hear with your ears, you hear with your brain. The ears just pick up and process responses to external stimulation (that is what we call sound). You’re brain ‘hears’ them.

I know she’s mine, but she really is amazing. Mark and Rachel loved her. They were amazed.

I’m proud of you Jasmine.

Healing is beautiful

Healing takes time. A lot has been going on. We are adjusting to this new life; the life that we never had.

I will blog soon but this is the reason why I have been silent. Thank you for your messages and emails.

Daya is healing very slowly. Jasmine and Anaya are awesome.

You Shine

We are all finding a way through something.

I know you’d never leave me behind
But I am lost this time
What if the love you deserve is love you never find?
I’ve learned in love and death, we don’t decide
And if only you could see yourself in my eyes
You’d see you shine, you shine 

For the the father of my children, my daughters,

for Leila, Jamie, Tom, Alia, Anu, Ruchit, Annika, Julia, Nic, Lauren, Alice, Karl, Diane, Elly, Pradeepa, Alice, Sabiha, Tania, Gemma, Maris, Aivar, May, Amy, Robert, Wilbur, Khadija, Hannah, Adam, Ruth, for my nurses, my friends who have supported me whilst going through their own challenges, for every oncology parent who is struggling with the loss of their child and trying to hold their family, their marriage or themselves together….if you could see yourself in my eyes, you’d see you shine, you shine.

This is beautiful…

When everything was broken
The devil hit his second stride
But you remember what I told you
Someday, I’ll need your spine to hide behind
For fear of moments stolen
I don’t wanna say goodnight
But I’ll still see you in the morning
Still know your heart and still know both your eyes
I could have told you ’bout the long nights
How no one loves the birds that don’t rise
So you can tell the heroes go hide
My sense of wonder’s just a little tired
But if only you could see yourself in my eyes
You’d see you shine, you shine
I know you’d never leave me behind
But I am lost this time
Are we destined to burn or will we last the night?
I will hold you ’til I hold you right
But if only you could see yourself in my eyes
You’d see you shine, you shine
So we’ll run into the open
Keep your hand inside of mine
And then when everything is over
I hope to think of this as better times
The sky got red and swollen
I guess I never see the signs
There can’t be songs for every soldier
It can’t be solace every time you cry
I could have told you ’bout the long nights
How no one loves the birds that don’t rise
So you can tell the heroes go hide
My sense of wonder’s just a little tired
But if only you could see yourself in my eyes
You’d see you shine, you shine
I know you’d never leave me behind
But I am lost this time
Are we destined to burn or will we last the night?
I will hold you ’til I hold you right
But if only you could see yourself in my eyes
You’d see you shine, you shine
I was lost ’til I found you
Now these songs will hold and hide your name
All it was was all about you
Since that night, the moon has never seemed the same
And if only you could see yourself in my eyes
You’d see you shine, you shine
I know you’d never leave me behind
But I am lost this time
What if the love you deserve is love you never find?
I’ve learned in love and death, we don’t decide
And if only you could see yourself in my eyes
You’d see you shine, you shine (Aye)
Dermot Kennedy, Lost.

Click here for video

I wasn’t expecting that…

I was driving to the funeral of a little child. Another one.

It breaks my heart to see a little coffin. I’m not as strong as people think. I always get a lump in my throat and then I fight back the tears.

I tried to focus on where I needed to go. The directions. Getting there on time, always early in my case. I try and focus on everything but the reality of the situation.

Don’t think. Don’t think. Don’t think. Stay focussed. Hold your shit together. Hold it together. Don’t think, don’t think. Be strong. Be strong. Don’t crack. Be strong for them. Don’t fall apart. Not now. Not today.

It doesn’t always work but I always sort myself out before I get out the car.

And then I heard this delicate and honest song….it’s one of my favourites…and I cracked. The tears came down. It’s utterly beautiful and reflects a life beautifully lived and filled with love. A life that this child won’t have…a smile that we won’t see again. How lucky we are to be here now.

It was only a smile but my heart it went wild
and I wasn’t expecting that
just a delicate kiss, anyone could’ve missed
I wasn’t expecting that
Did I misread the sign? Your hand slipped into mine
I wasn’t expecting that
You spent the night in my bed, you woke up and you said
“Well, I wasn’t expecting that”
I thought love wasn’t meant to last,
I thought you were just passing through
If I ever get the nerve to ask
What did I get right to deserve somebody like you?
I wasn’t expecting that
It was only a word, it was almost mis-heard
‘Cause I wasn’t expecting that
But it came without fear, a month turned into a year
And I wasn’t expecting that
I thought love wasn’t meant to last,
I thought you were just passing through
If I ever get the nerve to ask
What did I get right to deserve somebody like you?
I wasn’t expecting that
Isn’t it strange how a life can be changed
in the flicker of the sweetest smile
We were married in spring
You know I wouldn’t change a thing
Without an innocent kiss, what a life I’d have missed,
If you’d not took a chance on a little romance
When I wasn’t expecting that
Time doesn’t take long, three kids up and gone
And I wasn’t expecting that
And when the nurses they came, said its come back again
I wasn’t expecting that
Then you closed your eyes, took my heart by surprise
And I wasn’t expecting that!

I wasn’t expecting that by Jamie Lawson

News: No Evidence of Disease

On August 29th 2017, Daya was diagnosed with Neuroblastoma. It is a rare and aggressive childhood cancer with low survival rates. It was a devastating shock. She had been suffering for a few months before this date. Daya was diagnosed with stage four metastatic cancer. It had spread around her body. This is the worst stage. She was still a baby.

After two years and three months of front-line treatment, on 12/12/19 Daya was declared to be No Evidence of Disease. Her scans have come back clear.

She’s done it! Daya is now officially in remission and under surveillance. She will have an ultrasound and urine samples taken every three months. In between we will be attending many consultations and appointments to continue to review all of the side effects from her treatment. There are some urgent and pressing issues that need to be addressed. Neuroblastoma is a very aggressive cancer with a high-relapse rate. For now we will continue to take solace in her current status of ‘being clear’.

We have great relief in reaching this milestone. We are navigating a mixture of emotions. We are also very aware of our friends and families whose children have not survived or are yet to make it to this point. It is for this reason that we have held on to our news privately for a few weeks. Whilst Daya will not be ‘cancer-free’ for another five years, she has entered remission, which is a chapter we feared we could never reach. We know many children with neuroblastoma have not made it this far. We remember them, and their devastated families, daily as we savour each precious moment with Daya in this new phase of her long war with neuroblastoma.  

We would like to take this moment to thank those individuals and institutions without whom this would not have been possible.

Our family would like to thank all of our medical and non-medical teams at Great Ormond Street Children’s Hospital, specifically, our Consultant, Dr Giuseppe Barone, our CNS R.Mantell, our ANP A.Barry and all of our incredible nursing teams on Lion, Giraffe and Elephant. We also extend our thanks to all the individuals in our wider GOSH teams.

We would also like to thank our medical teams at North Middlesex Hospital, specifically, our wonderful doctors and nurses on Rainbow Ward and our community nursing team.

We would also like to thank our team at Memorial Sloan Kettering Hospital in New York, specifically we would like to thank Dr Michael LaQuaglia and his team for working tirelessly to remove Daya’s primary tumour. We are also thankful to Solving Kids Cancer who supported us en route to this surgery.

Lastly, we would like to thank our small family and amazing friends, and we would also like to thank you, the individuals whom we haven’t met during these turbulent times, who have supported us through this huge journey. Thank you and a lot of never ending love from our little family to yours. We have come a long way. We couldn’t have done it without you.

If you want to go fast, go alone. If you want to go far, go together. An African Proverb.

2020 for us is about hope and healing.

Happy New Year.

Hope & Healing

Please be kind with an oncology parent.

This honest post is from me to you; it is for every oncology parent I’ve met this year, for everyone of you that wants their friends and family to know what it’s like for you and for anyone invested in our journey.

There is no crisis here, no mental break down, no rocking back and forth or inability to get out of bed; there is just that low-level, consistent hum of existing in a vacuum of paediatric oncology treatment which in turn forms the backdrop during these all important childhood years. It’s is boring, lonely, all-consuming, painful and full of decisions, unwanted procedures and waiting.

Please be kind with me as my broken heart is still fragile. Christmas and the ticking of a clock into a new year doesn’t change that. Under the strength you see is a parent who on somedays is learning to surf the waves and on others is trying not to drown out at sea in the pouring rain.

My heart is broken; not into a few pieces. It is scattered and sometimes angry, sometimes sad. I carry it with me, in pieces, everywhere. I pay it no attention because I need to focus on everyone else around me. For the time being my priorities are often urgent, to sustain life and to raise empathetic children. There is no respite. On the outside I often appear strong to you, however, scratch the surface and you’ll find an aged soul and a fragile heart, a tired body and a busy mind longing for a better journey.

It’s not a lie to say we almost got completely shitted on in the ‘sharing-out’ of ‘shit-situations’.

You say I’m “strong”. There are no prizes for being strong. I’d say I’m a fighter who won’t give up. It’s in me. I’d also say we have no choice. I can accept many things but giving up when there is a way through isn’t one of those.

From the beginning, I’ve wanted nothing more than for this to be over. Everything I have done is about staying strong and holding myself together for the children.

Somewhere along the line, slowly, slowly, I got tired and then broken. I’m adamant to find a path to heal. You can’t heal while you’re still in the storm. 2020 is going to be stormy but hopefully less so. 2020, if all goes well, is about hope and healing.

“You just keep giving”. It takes one to know one. I’ve felt hurt, I’ve felt sadness, I’ve felt fear. I’ve felt loneliness. Kindness and love are the two greatest healers. Time doesn’t heal. Over time you (may) develop the ability to heal. You develop an approach to survival. It’s important to me to be there for other families who are going through that awful time; that lonely and fear-filled time which we have already experienced.

“I’m feeling greedy. I’m hungry for new experiences”. I’m ready to leave the hospital behind, I’m not clinging on to our medical team as some sort of safety net. I want to walk away from all of this and let the children experience a life full of fun and freedom. And then, and only then will I be able to truly heal, with all three on the beach…I’m greedy for new experiences, long drives, new destinations, sandcastles, happy meals and healthy snacks, sing-a-longs and footprints in the sand…these, after all, should have been those years…

There is a life beyond this. I’m not holding on to anything. I’ve been holding out….for the right ending…for the corner that we can turn to a better life. You can’t do that when you’re stuck in an isolation room for over two years…

I’m grateful. I’m grateful to many people for many things. Im grateful to the universe for collaborating to get us to this point. There is no doubt that I’m completely and utterly drained by and fuckt off with our situation. However, I have learnt to live in the unpredictable storm. I’ve normalised this new life. I’ve become indoctrinated and accustomed. We make it look easy. He goes to work, where he has to deliver accurately and constantly, as well as dealing with all of this. I have an excessive number of appointments lined up for January 2020 already. I’m not happy about it. I’ll tolerate it. As with all things, life changes…

In actuality one spends everyday healing. That’s what resilience is. Believing that everything is temporary, is passing and that life can change.

I’m broken and tired. Yet, I am adamantly resilient.

More importantly, I have love and hope…