Radio Famous

Kip is in the hospital at the moment because he has a runny nose; the annoying thing is that as we enter “cold” season, any temperature means a 48 hour stay for antibiotics just in case it’s not a cold but actually sepsis. It might seem perhaps over the top, but sepsis is a real threat to kids in Kip’s situation.

Kip quite enjoys going to the “blue hospital” though, because he gets fussed over a bit and there’s a Little Tykes car he loves playing around in.

There’s also the echoing underpass on the way there, that Kip likes to shout various toilet-related phrases through – which this week made it onto the radio as part of BBC Radio 5 Live’s outstanding film review programme, Kermode & Mayo’s Film Review:

https://www.bbc.co.uk/sounds/play/m000p0qh

Listen from 23 minutes and 20 seconds in to the show for the most wonderful stream of smelly pants comments and a bit of context to it as well.

Thanks to everyopne who has donated to our GoFundMe here: gf.me/u/y5b8gt

We’re fundraising to support Kip and Millie through the long transplant treatment, and to support families and children with cancer in countries where cancer services are struggling. More info here.

Stage 2 – A Big Ask

In the last nine days, Kip has had more visits to outpatients than in the last nine months. Multiple lumbar punctures and bone marrow aspirations, the restarting of chemotherapy, tissue typing for him and for Millie as we assess if she’s a suitable match for an inevitable bone marrow transplant.

Sarah and I have been struck by two things.

First, we are incredibly lucky not just to have access to the NHS, but to be in Birmingham mere minutes from arguably the best paediatric oncology unit in Europe. Despite that, this has been a major struggle for both our children.

Second, we are saddened that so many kids around the world are not so fortunate as Kip.

Recovery rates in the UK for Acute Lymphoblastic Leukaemia (what Kip has) are around 85-90%. The briefest search online taught us that in many parts of the world, only 10% of children survive leukaemia. Families lose children because they don’t have access to clinics, medication, the skilled clinicians and the infrastructure to treat this insidious illness.

We’ve decided to do something about it, and with your help we can achieve a good outcome.

We’re launching a fundraiser today in the first case to give Kip and Millie as much support throughout treatment and beyond, and in the second case to support charities that are improving survival rates for children with cancer in the developing world.

We are launching a fundraiser today to be split 50:50 between two areas:

  • The first is to help us to get through this next stage a bit more easily by being able to get extra help with cleaning/easy good food and some kit for getting us through the long hospital admission(s). (And i’m thinking of a holiday for after we get through this – Ed). We know we have a lot of lovely friends and family who want to help us and this is a really practical way you can make a difference to our daily lives.
  • The second cause will be supporting a charity that improves healthcare for kids in the developing world – where the basics make a massive difference to kids surviving – and to families making it through difficult times of illness. We will choose a charity to support and update here, and of course we’re open to suggestions.

Please support however you can, and share as widely as you can.

Thank you so much for being with us on this journey.

End of Treatmentn’t

Tuesday 13th October 2020 was Kip’s last clinic visit for a routine End-Of-Treatment lumbar puncture and bone marrow aspiration to formally mark the conclusion of three and a half years of being in and out of hospital.

Kip had the anaesthetic while laughing and saying “farty bum-bum wee”, keeping all the staff entertained as usual. The procedure went perfectly and, as we left clinic, the staff lined the corridor and applauded him as, finally, he rang the bell and got his certificate. I was so proud and there was a lot of joy in the room.

But…

On Tuesday evening, Sarah got a call from our consultant. The lumbar puncture had shown leukaemia cells in Kip’s spinal fluid. Sadly, it’s not over yet.

On Monday (19th October), Kip will start a new round of steroids for between 5-8 weeks, have weekly lumbar punctures with intrathecal methotrexate (sing that to the tune of Bob the Builder), hydrocortisone and cytarabine, plus weekly infusions of vincristine.

Once all the leukaemia cells are gone from his cerebrospinal fluid (CSF), he will get a bone marrow transplant, and that’s going to involve a very long admission of at least two months. This will probably be the hardest time of all, as he won’t be able to have any visitors and won’t be able to see Millie or more than one parent at a time.

We’ll keep everyone updated quite regularly on his progress. Thanks for your messages and friendly support over the years of treatment, it’s been an absolute lifeline for us all.

Ed

Maintenance – all good so far

We’re a fortnight in to Maintenance, and the smiling chipper Kip is doing amazingly well – so this blog has gone a bit quiet since there’s not really anything new to report.

Sarah and I are making our way back in to work, but not taking it too fast. Hence, we’re on holiday now. This is our summer holiday from last year… four nights in CentreParcs celebrating the fact that Kip can go swimming with his sister, and my parents as well.

Bloods are all fine (no numbers but it’s all good) so his dose can emain for another fortnight before he has to get bloods tested again.

Last night, for the first time in months and months, Kip got to play with a dog. What a brilliant time.

Delayed Intensification – Done!

Well done Kip, well done all around him – professionals and family alike – on reaching the end of DI and today’s excellent news:

Hb: 114

WBC: 4.7

Plt: 250

Neuts: 2.2

These four simple numbers show Kip is well enough to enter the Maintenance phase: Oral chemo at home, no planned admissions, and one short operation between now and the end of treatment.

Kip, for his part, has been an absolute riot of fun at home, talking and charging about and, today for the first time since diagnosis, going for a swim with his proud and relieved parents.

It’s not all over, but the worst bit is.

Delayed Intensification – Days 65-68

So it’s a bit different to lump a few days together but there’s so little that happened since Monday.

Kip is still at home and – this is quite cool – had a splashy bathtime with his sister. It’s amazing how tiny bits of nonsense like this that give us joy. He had a trip to the pool, but could only watch as he’s not quite healthy enough to get dipped in communal waters.

We’ve booked a holiday. And booked a second one as well, the first in March and then in August. It’s been interesting booking a trip based on price AND proximity to a major hospital instead of just the cheapest option…

Monday will technically be Kip’s last day of Delayed Intensification, then Tuesday is an off-week to let his blood counts recover before the maintenance phase begins.

The wee chunk is still having a bit of nausea and retching but nothing like it was a couple of weeks ago. The obsession with smoked salmon continues, and I had my first proper conversation with him (about cream cheese).

Delayed Intensification – Day 64

Today is nine months since Kip started treatment for Acute Lymphoblastic Leukaemia.

This was him then:

And this was him this morning:

Today he had his last intravenous dose of chemotherapy; they brought his dose of vincristine forward a day so his cannulae could be removed that bit sooner.

After I don’t know how many admissions and I don’t know how many days and nights in pretty much every ward in the hospital, Kip came home and played games with his sister.

Now two weeks of recovery at home (please no fevers!) and then he starts maintenance.

So thankful for everyone and everything that has kept him going.

Delayed Intensification – Day 63

Kip was put on the emergency theatre list to have his central line removed. The list started at 9am, and kept going until they were finished. Any trauma patient that came in would be bumped in to the list and we would wait our turn.

Kip was fasted from solids from 3am, and wasn’t allowed a drink from seven, until it was obvious we wouldn’t be seen before lunch so he was allowed water until 11. They also put up a drip with sugar and salt in it, and he didn’t complain in a hungry way all day.

As it was, the list continued and continued until, at one minute past seven at night, we got the call. Forty minutes later it was all done, and our now tired and cranky boy had a plaster where the central line had been, and two shiny new cannulae, one in his left hand and the other in his right foot.

The surgical team worked eleven hours on a Sunday. When Kip cried they gave him cuddles until we could get there. They were smiling, thanking us for our patience. They were from all over the world. And we didn’t get a bill at the end of it.

#LoveYourNHS

Delayed Intensification – Day 62

So this was the morning that the tough decision was made for us – Kip’s central line is sustaining an infection, so it has to come out. That means he’s on the emergency list for Sunday and the vancomycin antibiotics were started in the afternoon. As I understand it, vancomycin is to antibiotics as Mr Muscle is to household cleaning. The boy’s insides will be clean.

While under anaesthetic, he gets the line removed and a cannula put in his arm – this is a temporary way of getting the antibiotics into him for a few days. That will take us to Tuesday, when he gets his last dose of vincristine (chemotherapy) before maintenance.

The good part is that, barring serious infection, Kip won’t need any intravenous medication throughout the maintenance block. Once the central line wound heals over, he can go swimming and have a normal bath again, and the biggest infection hazard is removed.

The bad part is another operation, but he was going to have that anyway.

Apart from a few bits of being sick, Kip has continued on pretty unbothered by it all.

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