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

Ugh…

Kip’s fevers didn’t resolve and he was remaining lethargic, really not himself at all.

He was reviewed in clinic on Tuesday and we all agreed he needed admitting for diagnostic tests – he should have been showing some signs of recovery but if anything he’d got slightly worse.

That meant an ultrasound scan, a CT scan and, to be done under a general anaesthetic, a lumbar puncture, bone marrow aspiration and the fitting of a new central line.

The ultrasound was a particular horror. I know enough to notice something abnormal, but nothing like enough to interpret what’s on the screen. Safe to say a big round shape scared the daylights out of me, with good reason.

The thinking is that there are lesions or abscesses in Kip’s kidney, liver, lungs and spleen. Most likely cause is a fungal infection, which falls into the “serious but treatable” category.

More tests are required, and a biopsy might happen next week.

A more complete update will come soon, once I’ve caught up on sleep!

Meanwhile Kip has been started on a powerful antifungal treatment which he’s tolerating so far, and he’s been winking at the nurses too!

#TeamKip

Stem Cell Recovery – The Saga Continues!

Something disney look right…

Well the big laugh of the day was discovering the Disney filter on Snapchat, and Kip was full of laughter seeing himself transformed!

The general bloody-hell-ing continues however.

So in the last post I updated you on his operation to take out the central line and port we’d relied on for the giving of medicines. He had a cannula in his right hand for the administration of intravenous antibiotics (watch me show off the big words, I’m a nurse you know…) but by Thursday that had stopped working and become very uncomfortable for Kip. We had to take it out (more like I had to take it out because I’m the Dressing Whisperer apparently) but, with more antiobiotics required, he had to have another one put in on his left hand.

That was not a happy procedure; two medics and myself holding his arm super still as the needle went in, a small puddle of blood on the bed, lots of tears and a very unhappy little boy. The simplicity and convenience of the central line was harshly apparent as we struggled further to get medication into him in a pain free manner. Spoiler alert, we couldn’t. Every dose was uncomfortable with a scratching pain that really distressed Kip. At one stage he even took over the syringe to see if he could do it in a way that hurt less, to no avail.

Kip’s fevers continued into the Saturday morning but by the afternoon they stopped. With the promise of h*** if we had 48 hours below 38 degrees, and we fantasised about immersing Kip in an ice bath for the weekend.

On Monday, a phalanx of physicians came in to review and determined we could go home that afternoon. Cue packing, cue organising transport, taking out the cannula, dealing with the tears, reassuring Kip, remembering to unplug all the electronics, collecting medication and we went home. Kip was full of joy seeing his Granny, Grandpa and beloved big sister Millie.

Tuesday was a pretty good day at home, some fun activities but we could see Kip still recovering from something, a bit of lethargy and tiredness as one would expect.

Then in the early hours of Wednesday morning (today) he spiked another fever.

Now we used our zero-plumbing privilege and gave him a dose of paracetamol before deciding to call the clinic in the morning. They called us in, and the procedures began.

Kip had to have bloods taken, which was another distressing needle encounter, and be swabbed all over in case of Loathsome Diseases (all negative). We agreed to stay in but not start antibiotics unless he got another fever.

Which he did, about an hour later.

Cue another needle for blood cultures, and a bed back on Ward 19 where all this Stem Cell Transplantery began back in January.

So far we’ve avoided having another cannula fitted (after, I admit, a fairly robust discussion on the merits of hammering him with IV antibiotics) by arranging for a different antibiotic to be given by injection into his thigh. Kip is as thrilled with this as you would expect.

I’m now sat typing this on The Chair That Is Not A Bed about ready to collapse into a sleepy fantasy of where it all went wrong. Whoever choreographed this dance is clearly drunk.

#TeamKip

Stem Cell Transplant – plumbing

All wrapped and nowhere to go.

Wednesday 9th June was marked in the diary a while back as the planned date for fixing the plumbing – Kip’s double-Hickman central line and venerable old vascuport were scheduled to be taken out in what, to us at least, seemed like a momentous step forward in Kip’s recovery.

Everything was going to plan as well. Until Monday, when Kip spiked a temperature and we had to go in to the emergency department (again), have bloods taken (again) and have The Daddy of Antibiotics infused for 48 hours minimum (again) and get admitted to the ward (again). We’re getting very good at this, just at the stage where we’d be hoping to never need to access that wisdom anymore.

I was astonished just how busy the emergency department was; apparently nobody can get to their GP so every cough and sneeze is turning up in a confined space to share bugs. The poor staff are quite overwhelmed right now, but still were diligently caring for Kip.

We got a room on Ward 18 fairly quickly and Kip was settled in bed and fast asleep by 10:30pm. First things first, I unpacked and made sure we had decent WiFi, got the Amazon Firestick hooked up ready for the next day and got myself off to sleep in – ahem – A REAL BED! which had somehow missed the Cull On Comfort that left almost everyone else with a Chair That Is Not A Bed. Given the circumstances I managed to sleep very well indeed.

Tuesday was very good overall, despite persistent fever through much of the day. Kip got multiple visits from his favourite nurse and favourite teacher throughout the day. The doctors confirmed that, despite his temperature and the lack of explanation for it, we could go ahead with the planned surgery.

That happened in the late morning today; after fasting from 3am, Kip virtually ran across the entire hospital site to the theatre, then sat on my lap for the anaesthetic. Once firmly asleep, I escaped the building for a bit to enjoy the weather. Kip and I got back to the ward only a minute or so apart, and he immediately wanted ALL the Rice Krispies in the world. He snacked all afternoon on whatever I could find. Late afternoon saw the unwelcome return of a fever, and now that’s the headache.

Sarah took over from me just after tea time, and I look forward to a night in my own bed.

We don’t know when we’ll get home. Taking blood samples is now much more complicated as Kip doesn’t have any of the handy plumbing in him anymore, just a cannula in his right hand that’s good for giving but not drawing blood. We need to understand and get on top of this fever (which could easily be just a mild virus) before we can think about h***. We hope he’s not subjected to too much more antibiotics for the sake of his gut.

Oh well, onwards and upwards I suppose!

#TeamKip

Stem Cell Transplant – leaving clinic

Well the days since T-Cell recovery have just shot by!

We had a theatre trip on Tuesday (not that kind of theatre) for a lumbar puncture and bone marrow aspiration to check for signs of leukaemia relapse, chimerism (if any of the donor cells are still there) and overall health of the bone marrow.

So here’s a summary:

After steroids, radiotherapy and chemotherapy, Kip had a stem cell (or bone marrow) transplant at the end of January. After three weeks with no sign of it working he was given a growth hormone to stimulate it, which had the desired effect and neutrophils (cells that fight infection) were found.

Surprisingly after testing it was found that the donor stem cells weren’t growing but that his own system had come back. Nobody expected this because it just doesn’t happen; no nurse of doctor at the hospital had ever seen this before.

Nonetheless, healthy cells kept growing, and there was no sign of any leukaemia anywhere (in remission). That has continued since then and, despite some setbacks and side effects, his immune system has recovered to the point he has the all-important T-Cells to fight off viruses. And what a time to be able to fight off a virus…

One side effect of the Covid pandemic has been a massive drop in other diseases like flu, chicken pox, measles and so on. That suits us quite well.

Kip still has his central line (wigglies) and port connected to his bloodstream for the way administration of medicines but they aren’t needed now. And, as they remain an infection risk, they are due to be taken out on Wednesday next week. The wigglies have been in for six months, and the port for a little over three years!

Kip’s overall health has taken some hefty knocks and he’s quite underweight after a bout of gastroenteritis, but right now he’s running round the garden with Millie being a happy and apparently healthy little boy.

We’ve seen no sign of the leukaemia coming back and, while there’s a real risk of relapse (more so than if the transplant had worked) every week that passes with no sign of cancer cells is a step away from that terrifying eventuality.

The team at Birmingham Children’s Hospital are happy enough with his progress that clinic visits and blood tests will now be just once a month. In February, we can look at getting vaccinations done and, dare I say it, have a normal life!

Sarah starts back at work on Tuesday, while I’m taking a career break to homeschool the kids (and be a kept man!), with some support from my folks for the first few weeks.

I don’t think we’ll ever think that the danger has passed or stop being vigilant, but certainly this is moving us into a different chapter. We can start looking ahead to a year without cancer, two years, five years, maybe a lifetime..?

Many miles travelled, many more to go. What a journey!

Stem Cell Transplant – Day 125

Walk this way.

125 days after the Long Stay began (and with various trips in and out between), here’s Kip walking out of the hospital.

What’s different about this time is the magic 0.4; Kip’s T-Cells are above 0.3 and staying there, after successfully weeding out the Epstein-Barr virus. Clinically, formally, joyfully, Kip is now “recovered”.

His weight started to come up again, 150g higher than yesterday but it’s a fair way back to his ideal weight (I do not recommend stem cell transplant as a weight loss programme). He seems o be tolerating the feed quite well and, since the virus is in check and he’s producing antibodies to it there was no need for us to remain in hospital.

Some of his medications have been stopped as well, sadly including the only one that he actually liked the taste of, and what he has to take now will gradually taper down to a single medicine. He’ll be taking twice-daily doses of penicillin forever, but that will be it about five months from now.

We’re back in clinic on Tuesday, but Kip gets to spend the rest of the weekend playing in the garden with Millie and Grandpa.

Welcome to the jungle.

I promised to keep this daily blog going until we got to T-Cell recovery, so now I’m going to take a few days off and will do updates on clinic and theatre days.

We’re looking ahead to the removal of Kip’s port and central line, further bone marrow and spinal fluid checks, and hopefully some sort of real life by the end of summer.

Thanks for being with us so far.

#TeamKip