Help to breathe

Today was a bit emotional, sorting through photographs (hopefully for an article in the local paper), but mostly the morning was taken up with setting up an account with a broker so we could do this:

£15,000 was sent to our friends at Equalize Health.

All that cash, given to Kip’s memory, from you wonderful donors.

Equalize Health have developed a product called FlowLite that helps newborn children with breathing difficulties. It’s a condition that takes the lives of millions of children every year.

Equalize Health said:

“RDS is the leading cause of preterm newborn death globally but, with low- and middle-income countries (LMICs) suffering from the overwhelming burden. Over 3.2 million babies each year will suffer from RDS in LMICs and without treatment, nearly all of these babies would die from RDS complications. 

FlowLite, is a neonatal CPAP, specifically designed to address the gap in effective and quality care of RDS in even the most challenging settings. With FlowLite, we are addressing the key factors hindering accessibility, adoption, and effective treatment so that no baby, no matter where they are born, dies of RDS. 

We are grateful to be given the opportunity to contribute to Kip’s legacy with FlowLite. It is our honor and privilege to conduct our work in his memory. His laughter and love will live on in the thousands of babies, who will be given a chance at life.”

Our heartfelt thanks to everyone who has donated so far. If you’d like to give (or share to friends and colleagues) you can find our fundraising page here.

You can also get #SmellyPantsWee t-shirts that raise money for Equalize Health and World Child Cancer here.

#TeamKip

Saying goodbye

In the week since Kip’s funeral, several people have messaged asking to hear the eulogy.

Well, there wasn’t just on eulogy; we had contributions from friends and family as well as on each from Sarah and I. There was plenty in the way of laughter (obviously laughter!) and sadness and dancing (obviously dancing!) and tears.

As we arrived at the crematorium, the local Scouts had formed a guard of honour, saluting Kip as he arrived and shouting “Smelly Pants Wee!” at the tops of their voices.

Everyone placed a flower on Kip’s coffin before we went in; Kip’s two grandfathers, my dear friend Andy and I carried him while Millie led the way.

There were beautiful songs to open, beautiful songs to close, and a silly tune in the middle. If you’d like to listen, there’s a playlist on Spotify here.

Long story short, we had a difficult but beautiful service, and here’s what I had to say about him:

Kip was born on the 3rd of May 2016 in a warm pool in a softly lit room, into so much love and gratitude. Short breaths and tears marked his arrival.

In the beginning – we held him in our arms, we told him that we loved him, that he was a wonderful gift, and we would always be there for him. Our hearts were made whole and together we cried.

We took him home to a wonderful little girl who that morning became a big sister in our perfectly formed family.

He grew, and learned, and crawled, and walked, and pooped, shouted and sang, danced and ran, listened, loved and above all – laughed.

And – I know you’re meant to eulogise in a eulogy but – he could be annoying too. And frustrating, and give me a thump when he didn’t get his way, and break things and eat what he shouldn’t and not eat what he should.

Because he was a little boy; a perfect example because he did all the bad and good that we could have hoped for.

For five years, two months, five days, fourteen and a half hours.

Cruelly, unlikely complications from an unlikely course of an unlikely illness abruptly took Kip from us.

Kip died on the 8th of July 2021, in a warm embrace in the dappled sunlight of our back garden, surrounded by love and gratitude. Short breaths and tears marked his passing.

In the end – we held him in our arms, we told him that we loved him, that he was a wonderful gift, and we would always be there for him. Our hearts were broken and together we cried.

But the laughter though… Did any boy ever laugh so much? Did anyone who had such compelling reasons to be downbeat and dejected ever respond with such silliness and sniggering? When he had an operation, we’d play The Farting Song so everyone was in a good mood. When the nurses needed to take a blood sample from his finger, sometimes he’d wave his hand around, or run to the other side of the room, or say they could only check his blood pressure if they played the Bird Game with him.

He would share his chips and make people sing or dance with him, or use a urine bottle as a tennis racket. How can a little child hooked up to bags of chemotherapy use a drip stand as a skateboard? When a medic returned from holiday and said “Kip I’ve missed you”, he responded “of course you did”.

And the dancing. In the world of swinging your bum side to side, Kip was a champion. Had a central line fitted? Then grab a spoon and play air drums to some Northern Soul. He liked to move it move it. And to Pump Up The Jam. Two days before being admitted for stem cell transplant, he was doing an Edith Piaf impressions. Even the day before he died, when he could barely move his body, he bopped his head to Shania Twain, waved his arm in time to Prince Charming.

It is this, I think, that makes the separation most acute. That joy in the moment, often in such stark distinction to his circumstances brought so much to us. It’s an energy that can’t be replaced, but we will always remember.

Thank you Kip, for being the most cheerful and wonderful boy.

We are so humbled by the messages we have received from around the world about the impact Kip had on people’s lives. He brought laughter and tears and comfort and joy to those who knew him and thousands who didn’t.

And we are humbled by the donations made to our GoFundMe; we had an initial target of maybe £2,000 and now we’re at £38,000!

This means we can make huge donations in Kip’s name to our chosen charities (Equalize Health and World Child Cancer) on top of donations already made to Young Lives Vs Cancer, the Anthony Nolan Trust and UNICEF.

If you would like to donate, please click here.

We also have fundraising t-shirts, hoodies and masks here. (All profits are being split between our chosen charities).

Together we can ensure that Kip’s legacy brings comfort and healing to thousands of children and families around the world.

Thank you for being with us on this journey.

Kip – a video tribute

Our dear friend Dani put together this video from family snaps and clips.

I’ll be honest it’s a hard watch right now, but my goodness this boy had so many friends and loved ones in his life.

His funeral yesterday was the best we could make one of the worst days of our lives; but with laughter and dancing and pizza and Haribo and cakes and arts and trees and loads of people gathered together in love, we know he would have loved it.

Thanks to everyone who has bought merchandise and donated to our fundraiser – over £37,000 raised so far, with big donations going to Equalize Health and World Child Cancer. If you haven’t looked yet, please visit our Shop, our GoFundMe and follow on Twitter.

#TeamKip

L.A.K. – Life After Kip

Two weeks have passed since our Kip passed.

It’s been a scary and busy and painful week since my last post. We booked a funeral, booked a venue for the wake (though we’re calling it a celebration, because the word “wake” is just horrible to say), wrote the service and made a book to go with it.

And a further bereavement on Monday as Mum’s mum died, only six weeks after Dad’s mum died.

We are having a very shitty year.

There have been small positives in spite of it all.

One more time, Kip was featured on Kermode & Mayo’s film review programme (listen here, about 37mins in). So many listeners to the show have got in touch on Twitter and Facebook and Instagram to pass on their condolences. We’re just getting to understand what an impact Kip’s humour has had on the world.

And, inspired to do something to help other families in similarly crappy circumstances, today we were thrilled to see our fundraiser reach £30,000!

The reality of our week has been busyness, periods of numbed emotions like we’re carrying a huge burden (because we are), moments of joy as we play together with Millie and remember good times, often followed by tears and awful sadness as the sheer size of the loss makes itself known again. And again.

Right now we concentrate on giving Kip the best goodbye that we can.

And then, it’s the big What Now?

#TeamKip

A week later

A whole seven days have passed since our wonderful Kip died.

It seems simultaneously to have passed unnervingly quickly and fearfully slowly, as if we are inhabiting a different universe where the usual rules of time and space do not apply.

We have so much to do. A funeral, a coffin, a venue, a celebration, a memorial booklet for the service, food and drink, guests and dates have consumed our brains with occasional time out for sudden unbearable memories.

And there has been light as well. Laughter, incongruous and sometimes guilt-inducing, but laughter as a release and an affirmation of the joy our delightful son brought to the room.

Light from around the world as those who heard of him recall Kip’s little rant in the underpass, sharing condolences and how those few words felt right for them too.

We are so fortunate to have selfless family supporting us, dear friends taking some of the burden from us. In our small community, friends whose lives have also included the trauma of losing a child; that awful shared experience as some kind of anchor to unbearable present reality.

And our wonderful Millie too; affectionate, adventurous and so, so brave.

#TeamKip

Sarah’s update

In the aftermath of Kip’s death, I am grieving but I know that I am not alone. Mothers and fathers around the world lose children every day; around 15,000 child deaths under the age of five daily.

The contrast between the amazing and costly medical care Kip received for his complex and serious condition, and the children who die from very much simpler conditions is very stark to me. The inequality of this really bothers me. I hope that as a result of Kips short life, we can make a difference to some children and their parents who may face the loss of a treasured child for want of basic medical care.

Money raised with our GoFundMe will go to charities who make a difference to childrens’ lives, especially tackling problems in countries with extreme poverty where the biggest impact is possible*.

We have already used some of the money raised since October 2020 to send:
• £1000 to Unicef – see their work here: https://www.unicef.org/reports/unicef-annual-report-2020
• £1000 to World Child Cancer – https://worldchildcancer.org/
• £500 to Anthony Nolan Trust who provided Kip with a Stem cell donor through their amazing coordination of stem cell registers. (If you haven’t signed up to be a stem cell donor please do so)
• £500 to Young Lives Vs Cancer who have supported us a lot this past four years.

The response to our GoFundMe has exceeded our expectations quite dramatically, and we’re almost ready to make further donations to Equalize Health and World Child Cancer.

Some of the money donated will also be used by us as a family to help recover from our bereavement, plan some experiences and support Millie with whatever will help her rebuild after losing her little brother. 

Thank you, the support we have had over the last week is deeply appreciated.

Sarah

*The largest causes of child deaths are communicable diseases, maternal and neonatal complications, and nutritional diseases. These are often treated with relatively simple measures, medicine or technology. Child mortality has decreased dramatically in every country in recent decades but the daily human tragedy remains high.

For more information please visit: https://ourworldindata.org/child-mortality-everyday-tragedy-no-headlines

Giving for Kip

Kip loved Numberblocks.

Thank you everyone for the kind messages and condolences over the last few days.

Many have asked how to support or remember Kip, and many have already donated very generously to our GoFundMe page.

Since starting this round of fundraising, we have donated £1,000 each to UNICEF and World Child Cancer, and £500 each to the Anthony Nolan Trust and Young Lives Vs Cancer (formerly CLIC Sargent).

We are grateful for having a fund available to support Millie with good experiences as we seek to rebuild our lives in the face of such devastating loss. We think she deserves an amazing holiday once it’s safe to travel.

Future donations will also be going to Equalize Health to support the development of new technologies in addressing health inequality, and more to World Child Cancer because no family should struggle to find treatment when their child has cancer. We can think of no better legacy for our son than to make a difference for families who don’t have access to the standard of care Kip received.

If you can, please donate a few pounds, like and share the post and let’s do something truly remarkable in Kip’s name.

#TeamKip

Kip Curtis Freshwater

Thursday, 8th July 2021.

We took Kip home last Friday, 2nd July. A specially made up bed in the living room and a space where we could gather together in love and in peace to be with him.

Every day of the last week has been filled with snuggles through his long sleeps, stories and his favourite programmes, disrupted sleep, visits from friends and family to share five years of marvellous memories.

We listened to favourite songs and helped Kip to dance and keep the beat and, on at least one occassion, he was bobbing his head along to Shania Twain.

Kip wasn’t able to talk. We know he could understand every word, though he could only communicate with a simple gesture. With a little practice, we were able to communicate and understand his choices quite well.

Tuesday and Wednesday nights were very difficult – at the start of each we thought he wouldn’t see the end of either – but come Thursday morning he was awake and in my arms in the garden.

We made a sling using a bedsheet, which gave me two hands free to interact with him, hold his hand, stroke his hair, itch his back and still manage sips of my tea.

I carried him in the garden and we pretended to be on the rope swing – I always used to chase him and threaten to tickle his tummy, and he always kept just out of reach.

Millie cuddled him, gave him kisses, said how much she loved him.

Later on we walked down to the park, to a little triangluar area Kip used to ride around on his balance bike, so proud of his top speed.

In the afternoon we had 20 minutes of his favourite Paw Patrol, until he let us know he wanted to be in our arms again in the garden.

We sang his favourite lullabies.

We told him we loved him, that his sister loved him, that he was surrounded by people who loved him, and soon he wouldn’t be poorly anymore.

And we told him we knew how much he loved everyone, how beautifully he showed that love, and how desperately proud we are of him.

And, as he looked at the sky, the trees, his mother and I, he peacefully died.

Our beautiful boy; with us only 5 years, 2 months, 5 and a half days.

In our hearts, our minds, our lives forever.

#TeamKip

Home, and preparing

This is the second hardest post we will ever write.

The Epstein Barr virus made a huge comeback, causing lesions of B-Cells throughout Kip’s body. The worst are in his brain.

The brain lesions caused swelling, which is impacting on his movement, speech and facial expressions. He hasn’t been able to walk for a few days.

The lesions are growing fast, despite the targeted treatment. Swelling is being kept in check by very high doses of steroids, but all of these haven’t worked well enough.

The only medication left to consider would cause massively more swelling in the brain, which would be fatal or at best highly damaging, with no chance of getting our Kip better.

We are heartbroken and out of options.

Kip has only a few days.

So, we are home. Far better to be surrounded by his loving family, in comfort. A bed set up in the living room.

Kip watches his favourite programmes with Millie. We spend mealtimes together. We can have a few visitors. Granny and Grandpa are here, his aunties and uncles can give him cuddles. Our dearest friends can be there for us.

There are no more tests and needles to be endured. No more being taken away from his home off to the hospital. We are treasuring all the time we have left, just as we have treasured each day of Kip’s life, every hug, every smile, every moment spent together has been beyond beautiful, he has blessed us so very much.

Kip, our beautiful, brilliant Best Boy, we love you so much.

Kip Update 27th June

With Rabbit, his constant companion.

So last Tuesday was the clinic review and readmission with suspected fungal infection. We saw lumps on ultrasound and CT scans, which the team believe are lesions caused by infection (as opposed to malignant tumours).

Further scans revealed lesions in his brain, adding to ones in the kidneys, liver, lungs and spleen.

Analysis of bloods, his bone marrow, swabs from all over his body, spinal fluid and everything else all pointed away from fungus – and happily away from leukaemia – but towards a viral infection.

The only virus that’s been found on or in him for ages is the Epstein-Barr Virus, or EBV. It’s one of the most common viruses affecting humans and when the average person gets it sufficiently badly they get glandular fever.

In Kip it’s slightly different.

Kip now has a profliferation of B-Cells carrying a certain protein, which are prompted to reproduce by the virus. These B-Cells are gathering in clumps around his body, causing the shadows/lesions we’ve seen on the scans.

The protein on these B-Cells (CD20 if you’re interested!) makes them stick out a bit and, fortunately, there is a drug which specifically targets B-Cells with CD20 proteins, called Rituximab. Kip was started on this on Friday, along with dexamethasone steroids to wipe out the nasties.

We were hoping to see some improvement over the weekend but this morning Kip had lost the ability to stand or even sit up unaided. Sarah was worried, and I was terrified. I drove into town in tears, ostensibly for changeover but mostly expecting really bad news.

I didn’t get much response from him when I arrived and as we sat together we were braced for the worst. I took Kip down to radiology for another CT scan of his brain, and we waited for the results to come in.

To our immense relief, the scan showed no progression of the lesions in his brain, and no change to the swelling. Nothing has got better but, most vitally, nothing has got any worse.

We discussed the progress with one of the consultants and were told to expect good days and bad days that look like backward steps. Being “prepared” for it doesn’t make it any easier I can tell you!

We don’t know how things are going to pan out yet. Kip is really quite unwell, he’s not himself and clearly unhappy. He sleeps nearly all the time, which we suppose is good in that he’s not distressed. It’s just heartbreaking to see our beautiful boy knocked flat by such a common little virus.

We’ve also had to let Millie know what’s going on; sharing all of this to an 8 year old about a 5 year old is something that just shouldn’t happen.

Needless to say we’ll keep you all posted.

#TeamKip