Chapter 44: Freddie’s Day

We took out the Christmas decorations today.  On top was a light up ‘F’ for Freddie.  He wasn’t there today but he continues to light up our every moment.

It’s been a month since Freddie’s day.  A whole month since the most beautiful, orange filled, snow leopard spotted, exploding with love celebration of Freddie’s life.  We opened the invitation wide and you came!  You came with leopard spots on, with bunnies on and with orange blazing.  Thank you doesn’t cover it.  If you weren’t there we missed you and if you were there…….i just hope you managed to get a sausage roll (they were the talk of the town).

As November the 8th dawned, Martin, Arthur and I waited patiently in our finest outfits for Freddie to pick us up.  He arrived, resplendent in his wicker casket, laying on an orange blanket, adorned with wild flowers.  His chariot for the day was Winnie; an awesome grey, split screen VW camper van.

As Martin popped an orange pocket square in his jacket, Arthur and I greeted Freddie with his snow leopard and rabbit friends and tucked them in around him.  We then began our last journey as a family of four; tearing up the roads of South West Hertfordshire, flying through the sunlit, orange tree lined roads to meet our Team Carpenter, ready to celebrate the short but sweetest life of our first born.

That journey was brilliant. Arthur snuggled in, Martin held onto Fred’s basket and I drank in those last bittersweet moments together.  We laughed and we chatted but most of all we felt so proud.  We felt so proud to be Freddie’s parents and so proud to be telling everyone just how excellent he was.  This love and pride for our beautiful boy carried us through the rest of the day, which was both magical and heart wrenching in equal measure.  But the best part has to be that very special journey, our final adventure all together; me and my boys.

Arriving at Greenacres, we were met first by an impressive array of cars.  It was then I realised just how many people had come to show their love and support.  It was overwhelming but completely elevating.  We stepped out of the van to cheers and a sea of faces all willing us on, earnest and kind, where to start?  The children showed us the way, they swarmed in to see Fred in his van, touching and looking, inquisitive and totally at ease.  He was all tucked in, with his friends, with his family, enveloped by a cloud of love. The crowds of people were feasting on orange soup, pesto pasta and hot chocolate, topped off with carrot cake for afters.  I imagined Freddie there with all of us, eating his top favourite foods and darting in and out of the trees and adults like the other children.  Bubbles filled the air and the sun shone down on nearly 400 people, it was truly more then we could have ever hoped for.

Freddie, our guest of honour was carried in first by a team of our nearest and dearest.  Then as the first song “Luckiest” played, the crowds flooded in.  Children on blankets surrounded Fred in his casket, people piled in, filling every nook and spilling out into the courtyard.  Time flashed by and stood still.  Freddie was everywhere but nowhere. We began to speak and tell the world about our Freddie Miles Carpenter-Best One Ever.  I wasn’t present in the room, but Fred was, right there holding our hands.  He told me what to say:


Dear Fred,
To use your words, we are all boiling sad.
Not just me and daddy and Arthur but a huge bunch of people,  some of whom you’ve never even met. We are so sad you’ve gone away but also so sad that more people won’t be able to experience having you in their lives. This is because you were pretty awesome to say the least, as you once introduced yourself, you were Freddie Miles Carpenter, best one ever.
We actually named you Alfred; meaning elf counsel, pertaining to being wise, a sage, emanating old peace. We couldn’t have given you a more apt or appropriate name, as you have been our most intuitive, astute and greatest teacher. In life you guided us and in death you will continue to be our North Star, our mentor, our guru and our exemplar for living.
The first lesson you taught me started very early in your life. This was all about being brave. It’s amazing just how brave you can be when you have a little Pioneer in your belly and you greatest champion willing you on from the side lines. Through your birth you showed me not to fear the pain of the squeezy contractions, but to breath through them. Then to laugh and grow my way through the expansions, not worrying about what might come next or how long it will last. This lesson I will carry with me always through the contractions and expansions of everyday life.
You went on to show me your bravery in everything you did. Although cautious by nature you showed adventurousness rather than recklessness in the way you approached life. You always settled well to new situations and settings, cautiously but courageously giving it everything you had in your own quietly brave way. But then you always had your sidekick and ally, Rufus at your side. Together you could do anything. Freddie and Rufus against the world.
Your bravery reached new heights when you became ill. As daddy says, you gave your illness no respect. Life was too exciting to worry about hospitals, they were just a speck on the landscape of the adventure which was your life. You learnt quickly to get the bad stuff out of the way, leaving more room for endless games of top trumps, yellow car, the animal guessing game and oodles of Rufus stories. As I said, you made us brave. Thank you Fred.
The second lesson you gifted us was love. This shone through in everything you did. You practiced this through your powerful ability to be kind, to share, to make connections and to make people feel special. As a tiny baby, I was blown away by even in the early days, the way in which you communicated love through the way you gazed at me. I remember answering you in the most natural way, “I love you too Fred.”
You continued to be ever so generous in your love, telling us many times a day how much you loved us. In the last weeks of your life, you told us your were the happiest boy in the world because you had me, daddy and Arthur. The last time we spoke of love, we lay in my bed and we drew mazes in the air with our fingers, it was a journey on a map of your love.
The amount of meaningful friendships you had at the age of 5 is a testament to your ability to love Fred. This is because you were so good at sharing. Sharing your games, your ideas, your time and even your ice cream. Whatever you were doing would always be made better if you were doing it with another. Perhaps this was why you included all your teddies in your family, referring to them as your friends. This was why you and Rufus were such a formidable team. This was why you impacted so many, through your gift of making others feel special. Thank you Fred.
Finally, I wanted you to thank you for the adventure we have been on together. Of which, the beginning and ending have mirrored each other more than I could have ever believed.
As you came into the world you started off inside of me, as close as two people can be. Daddy cut your cord and you came to by breast where I fed you. We went to my bed and we held hands and gazed at each other. Endless notes about feeding, left boob, right boob, dirty nappy. First bath in the sink, first bedtime story. People at our house, sending messages, meals on the doorstep, flowers and cards. Then you were on my lap, playing at my feet, running through our house and out the door to nursery and school.
Then at the end, you returned. You could no longer could manage school, you came to the sofa next to me, on my lap and then in my bed. People at our house, sending messages, meals on the doorstep, flowers and cards. Endless notes about meds, this syringe, that syringe, been to the loo. We went to my bed and held hands and I gazed at you. Last story, last breath, last bath, we cut your line. You came back inside of me, to my heart. I will carry you there, although it is heavy, with honour and pride and with bravery and love.
I love you to rabbit world and back Fred.
Always Mummy

Afterwards James read his love letter to boyhood, a poem he had written about playing with Freddie:


I know!
I know! Let’s build a pirate ship! You can be the pirate! Come on! Rufus can sail on it and protect us from the deep sea monsters! We will have to watch out for the squid! Look out here comes an octopus that has really, really huge tentacles! Pkow! Pkow! Pkow!
I know! Let’s make a machine! Let’s give it claws! Really big claws!! And big tyres! Bigger! Even bigger! Bigger still! And a grabber! And a saw! And a hook! And a skid plate! ‘A skid plate?!’ Yeah – you know! A skid plate! Lets build it! Rufus wants to ride it!
I know! Let’s build sandcastles! Let’s build a car in the sand! Let’s make it fast let’s make it slick! Let’s turn it into an Alligator! Let’s get in and cross the galaxy! Rufus knows the way! But we’ll need power, more power, more power and let’s cross that galaxy again! Again? Yes! Again we need to cross the Galaxy again!


Next, Freddie’s head teacher and class teacher reported on his life at school.  We heard about his antics, his chatting, his friends, his love of learning, his kindness, his respectfulness, his humour, his resilience and did I mention his love of talking?  Once again, I felt proud but also happy that Freddie had loved school so much and this had been a little bubble of gorgeous normality for him.

After this, Ali read the book, ‘A Lion Inside’.  This was a special book for Freddie and Martin and in Freddie’s final days he explained that this was a book that he loved to share with his daddy.  Freddie always had a way of making something feel special when you were with him.

Finally, Martin spoke:


I’ve known I’d be making this speech for a long time, but for a long time I’ve gone round and round in circles trying to figure out what best to say.  Over the last few weeks I’ve been repeatedly told, there are no words to describe what’s happened. Which is really useful, when you’re trying to think of some words to describe what’s happened. In the end I thought I’d just tell you a little bit about what I think about when I think of Freddie.
Freddie used to make me laugh a lot. Back in 2016 we went on our first family holiday. Arthur was 6 months old at the time and Freddie was 3. It was our first proper family holiday and, if I’m honest somewhat unrepresentative of holidays to come. We were staying in a five star resort in Mauritius – a place wildly beyond our means. One evening we were eating dinner in the restaurant. Natalie had gone off to the cheese counter and I was left at our table with the boys. The restaurant was very busy, Arthur was throwing food about and Freddie was complaining because he needed the toilet and I’d told him to wait – or words to that effect.
I was cleaning  Arthur’s face when I noticed Freddie had gone very quiet. I looked at him and he was sat still, slightly red faced, looking at me, one hand on the table, the other hand, clutching  his willy, which was on display for all to see as his trousers and pants were now mysteriously on the floor.  I asked him what he was doing, and he told me I’d told him to do it. I looked at him and he said “you told me I couldn’t go to the toilet and just had to hold it, so that’s what I’m doing.”  As I said, he made me laugh. Although not always intentionally.
As you probably know, Freddie loved animals. I feel partly responsible for that. As many of you will know, part of a parents job is to try and force your own interests on your children. So if you know me, you’ll understand why Freddie liked animals.  He had his favourites though. If I asked you Freddie’s favourite animal you’d probably say a snow leopard. With good reason. However that wasn’t actually the case. Earlier this year Freddie sat me down and told me he had something to tell me. He had his serious face on, because, as he told me, I wouldn’t like this news.  After much consideration, Freddie had decided the snow leopard was no longer his favourite animal. The elusive, majestic, ghost of the Himalayas, had been toppled from it’s podium. By the humble rabbit.
Freddie had a spacial relationship with rabbits. The sort of relationship that can best be described by talking a little about Freddie’s third favourite animal. The honey badger. For anyone who doesn’t know, the honey badger, despite it’s relatively small size it is one of the most ferocious animals in Africa. One of our last trips back from Great Ormond Street, Freddie was talking to us about honey badgers. He was explaining how, in Africa they worked with a bird called the honeyguide. The honeyguide would lead the badger to a bee hive and the honey badger would attack the hive. Afterwards both animals would feed on the honey.  This was, Freddie explained, using these exact words, a good example of a symbiotic relationship in the animal kingdom.
It’s embarrassing when you have to google a word your 4 year old uses. Symbiosis, for anyone else who doesn’t know, is a relationship between two or more animals of different species. One animal may benefit greatly from this relationship whilst the other is not helped but equally not harmed by it.  And this brings me back to rabbits. One particular rabbit. A rabbit by the name of Rufus.
Rufus was Freddie’s little cuddly rabbit. Rufus came into our lives when Freddie was just a few months old and in the 5 years that followed, he barely left him. If you see a photo of Freddie, chances are, Rufus is there too.  In Freddie’s mind, Rufus was strong, brave and fearless. He could do anything.  To us he was just the thing we lost 20 times a day. Strangely, Rufus’ life mirrored Freddie’s somewhat. Shortly after Freddie had a tumour removed from his brain, Rufus’ arm fell off. The surgery was less complicated for Rufus, but together, their wore their stitches with pride.
Rufus is with Freddie now. That partnership will live on. A symbiotic relationship in every sense of the word. Knowing exactly where Rufus is brings me a sense of peace. I know Freddie would have wanted Rufus with him and I take some comfort in knowing Freddie isn’t alone.  I’m also extremely happy I’ll never have to turn the house upside down again looking for that little rabbit.
We spent some time picking out the music for today. I wanted to take a couple of moments to explain one of our choices – a song called the luckiest, which played as you came into the room.  That might seem an odd choice under the circumstances, but the more I think about it, the more appropriate it feels.  A couple of months ago, after Freddie’s relapse, when we knew how this journey would end, Freddie was sat at the table at home, and said to me and Natalie “I have the best life. I must be the luckiest boy in the world.”
Under the circumstances, it seemed unlikely. However the more I thought about it, the more I wonder if maybe he had a point.  Statistically of course he was wrong. Freddie was, medically speaking, very unlucky and I’m not taking anything away from that, but happiness isn’t measured by statistics. There’s no getting away from the face Freddie was happy. Almost always and nothing can change that. He loved life. He loved his friends and his family. He loved going to school, he even loved going to hospital, especially if he was having a general anaesthetic.  Freddie manage to extract joy and happiness from everything he did. And when you consider just what he did, that’s quite an achievement. He saw the best in people and made the most of every opportunity that came his way. And if we all did that a little bit more, I suspect the world would be a better place
Ultimately though, I don’t know if lucky is the right word to describe Freddie.
But I do think lucky is probably the most appropriate word to describe anyone who knew Freddie. I asked Natalie a few weeks ago if she could go back in time would she change anything. Without the slightest hesitation, she told me she wouldn’t. And I wouldn’t either.  You’ll have your own memories of Freddie. But when I think of Freddie, I think of a little boy full of life, exploding with happiness. Braver than anyone I’ve ever met, yet overflowing with kindness.  And the fact that little boy was my son, even for just a short time, makes me think I’m the luckiest man in the world.
 Last week I sorted photos of Freddie from his birth until until his death. When put together in chronological order we ended up with a beautiful montage that visually told Freddie’s life story, far more emotionally than I could with words alone. I think sharing that with you seems little a fitting way for me to finish.
So I’ll leave you with this. 100 photos that tell the story of Freddie.  It was an incredible adventure. Thank you for being a part of it.

This was followed by a montage of 100 photos documenting Freddie’s 5 years.  This was something that always reduces me to tears every time I watch it.  I think I have watched it over 50 times, but on this day, I didn’t cry, I just felt lucky. You can rewatch the video by clicking (here) if you like. The password is rufus

Fiona, our lovely celebrant explained to the room about our wishes regarding remembering Freddie. Along with the order of service we had included a postcard to send Arthur to record memories of Freddie.  We also invited people to perform a random act of kindness in Freddie’s name, and included a small business card to leave once you had done this.  We hope that in this way Freddie’s energy continues to be out there, making good things happen, bringing smiles to people’s face and making them feel special.

Our last act was to say good bye to Freddie and we did this by each placing a snow leopard spot on his casket.  Arthur, Martin and I started this process, but this didn’t stop us popping back once again, for one last look.  If it was possible, Freddie looked even more mighty than he had when he arrived, covered in the love of nearly 400 people’s good wishes and love.  The snow leopard reigned mighty that day.

The celebrations continued at Café in the park.  Here, the best sausage rolls ever were converting vegetarians and vegans by the minute.  The gin, wine and beer were flowing and children were being entertained by a magician with a real rabbit (kudos from Fred).  Love, magic, healing, remembering and sadness ran through the room.  I cannot tell you how mind blowing I found the whole event.  It reflected Freddie in every way, and I loved every minute.  I think I am still processing all the faces, messages, people, smiles, hugs, kisses, laughter and love.

Freddie remains at Greenacres, where his ashes will be placed in ‘The Stumpery’, a little haven of beauty within the forest.  Here, he will find his home under a tree with the nest of a Red Kite  (a bird which was part of our daily family conversations), under a carving of a butterfly.  We hope to visit him often.  Although he runs through the fabric of our house, where he was born, where he lived and where he passed.

Freddie Miles Carpenter, truly the best one ever.

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Chapter 43: Freddie’s funeral

Freddie’s funeral will take place on Thursday 8th November. The day will be a little untraditional as far as funerals go. We wanted the day to reflect Freddie as best as possible and certain “normal funeral” things just didn’t seem that appropriate. Hopefully the information here will give you everything you need to know, but if we miss anything don’t be afraid to ask. Please read everything, there’s a small request at the end.

Firstly and most importantly, the service is open to everyone. Even if you didn’t know Freddie personally. In fact, even if you’ve never met any of us, but you feel you’ve been on this journey with us, you are welcome. Children are also very welcome. I appreciate this is a personal choice for families and if you feel this might be too much for a little mind to take on then that’s fine. All I’ll say is that I think children surprise us sometimes with their capacity to understand things beyond their years. We will make the day appropriate and dare I say enjoyable for children. It wouldn’t feel right to celebrate Freddie’s life without his friends with us so if you’d like to bring them, that would make us very happy.

There will be two locations for the day. The service it’s self will be held in Beaconsfield at Green Acres. Green Acres link here

Green Acres is 72 acres of mature woodlands with a beautiful woodland hall where we can have the service. There’s also a gathering hall where we’ll serve some refreshments before the service. We like the idea of spending some time together before the service just to remove the difficult nervousness that inevitably comes with funerals. The food will be some of Freddie’s favourites and there will be some tea and coffee.

  • We’d like you to arrive at 12.30pm.
  • We should finish at Green Acres around 3pm.
  • There is plenty of parking.

After Green Acres we’d like to invite you to join us at the Cafe in the Park in Rickmansworth. Cafe in the Park link here

This was one of Freddie’s favourite places and very kindly the team there have agreed to host us all (they don’t normally do that type of thing, so massive thanks to Carly, Tina and the team.) There will be food and drinks (soft, less soft and much less soft!) lots of music and hopefully a few laughs along the way. Anyone who knows the Cafe knows what a lovely place it is. It’s in the middle of the aquadrome so if you want to venture off for a walk, feel free.

  • We will finish at Cafe in the Park around 7pm.
  • You can park at the aquadrome. They will leave the gates to the park open for us.
  • Parking is free and there’s lots of it.

I’ve been trying to think of some of the questions I might ask, so here’s a little Q&A to hopefully cover anything you’re wondering.

Should we bring anything?

No, just yourselves as they say. Any children coming might like to bring a cuddly toy with them as Freddie loved them, and as you know, was never without Rufus.

What should we wear?

Whatever you are most comfortable in. I wont be wearing black, or wearing a suit if that helps! Freddie favourite colour was orange if you want to throw that into the mix! So long as you wear something, you’ll be appropriately dressed!

Will we need a car?

Yes. Green Acres and the Cafe in the Park are about 30 minutes apart. Green Acres is not walking distance from public transport. Cafe in the Park is about a 20 minute walk from Rickmansworth Underground station. If you don’t drive, or know anyone that does, let us know and I’m sure we can put you in contact with someone who can help.

Should we send flowers?

No thanks. If you’d like to do something, we’re asking that donations are sent to Alice’s Arc. (https://www.alicesarc.org/) Alice is a wonderful little girl we met at GOSH whose parents set up this charity. Alice Arc is dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma. If you’d like to do something, please support them. If you’d rather not donate online, you can post cheques (payable to Alice’s Arc) to our funeral directors:

James Peddle Ltd

10 Moneyhill Parade

Rickmansworth

Hertfordshire

WD3 7BE

Will there be food?

As above, there will be a light lunch at Green Acres then something more substantial at Cafe in the Park. You wont need any money for anything.

How formal will it be?

It wont be a formal affair in the slightest. If you want to get up mid service and go for a walk, be our guest. We’re not formal people and we’re not going to start now.

Will it be really miserable?

Ok, you’re probably too polite to ask that, but I know I’d be thinking it! It will be much like this blog. We wont shy away from what’s happened, but we’ll approach it just as we’ve approached everything in the last 18 months. It will of course be tough, but there will also be smiles, jokes, laughter and silliness.


And finally, a request….

If you plan on coming, please can you let us know. As we said, everyone is welcome. The selfish Martin wants to pack the place out and give Freddie the send off he deserves! We need a rough idea of numbers for the caterers, so if you’re reading this via Facebook, you can comment there, comment on the blog, text me if you have mine or Natalie’s number. Whatever works for you. If you could let us know by November 2nd that would be lovely. Think of it as your birthday present to me! (But if you were getting me an actually present don’t think of it that way!)

You’ve been with us this far. Hope you can make it for Freddie’s final chapter.

Much love. Martin and Natalie xxx

Chapter 42: Goodbye Freddie

On 3rd of June 2013, just as I was going to bed, Natalie walked in to the bedroom and said the words to me that changed our lives forever

I think my waters have just broken

What followed over the next 20 or so hours was the most beautiful thing I’ve ever witnessed. The woman I loved, giving birth to the most perfect little boy I could have ever wished for. Alfred Miles Carpenter – Freddie as we knew him, was born at home at 7.30pm on June 4th, just as we planned. It was, by all accounts a perfect labour. We were thrilled, excited and in all honesty, nervous as how we’d ever manage to raise a child on our own.

Just over five years later, in that same house, just metres away from where he was born, Freddie decided it was time. 18 months after he was first diagnosed with cancer, his heart beat for the final time and peacefully, he passed away.

By all accounts, Freddie shouldn’t have lasted as long as he did. When we were rushed to Great Ormond Street 5 weeks ago, his MRI showed the tumour was life threatening. It’s size and position meant any continued growth would likely result in his death – and we knew it was growing. His alertness, his playfulness and his continued enjoyment of life went against what the MRI was showing. He should have been sleeping most of the day. He should have been tired and confused. Instead he was building Lego, watching TV and playing with his friends. He was making it very clear this was going to be on his terms, and his terms alone. And we loved him for that.

Over the next couple of weeks, things slowed down. Freddie slept more, spent his days on the sofa and starting behaving more in a way consistent with his illness. For various reasons he was on a permanent pump that administered morphine and ketamine to help with the pain. We were also assigned 24/7 palliative care, meaning a wonderful team of nurses were on the end of the phone day and night. They also visited every day to check on him and his pumps. This level of care happens when a patient is deemed to be 8 days from death. Of course such a specific number is hard to predict, but they have a reasonable idea.

Freddie lived for 6 weeks with this care. We always knew he was a fighter, but this was beyond what anyone expected.

The position of Freddie’s tumour meant as his conditioned worsened, so did his unpredictability. Having anything pushing against your brain is clearly problematic and as he became more poorly, simple things started to become harder. At first it was little things like his memory going or subtle changes to how he’d react to daily events. I don’t think this post is the right place to detail what has happened over the last few weeks, but the Freddie that passed away on Saturday was a very different little boy to the Freddie that went to America 12 months ago. That’s not to say we loved him any less though. We loved him with everything we had and to watch him die in front of us was the hardest thing I think anyone could imagine. Cancer is a cruel, cruel disease and although Freddie tolerated his treatment with bucket loads of strength and bravery, ultimately his little body could only take so much. Natalie and I are so grateful we got extra time with him, but it was incredibly difficult to watch.

Letting Arthur know Freddie had passed away was tough, but Freddie being at home made things easier. We explained what had happened to Arthur, then he brought Freddie some of him favourite teddies. We explained Freddie had left him a goodbye present – a lovely framed drawing of an elephant. Freddie gave Arthur a cuddly elephant when he was born so this seemed appropriate. Arthur now has the drawing, along with a photo of his brother next to his bed. Time will tell just how much he understands, but Freddie will always be part of the family and we’ll talk to Arthur about him every time we can. It’s difficult for Arthur, but so far he seems to be processing it well.

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It’s early to say, but I guess Natalie and I are doing ok. Up and down would be the best description. For every normal moment, there’s a second when you remember something small – like how he told me a couple of weeks ago he was exciting to leave out a mince pie and carrot for Father Christmas – and suddenly the world seems a very unfair place once again.

We just miss him a lot.

We’ve got a few formalities to sort out this week. We’ll let everyone know about service arrangements. A lot of people have joined Freddie on his journey and we’d like everyone to have the opportunity to say goodbye should they wish.

In the meantime, we have a quieter house. One where tears are being shed on an almost continual basis, but equally, one where memories of Freddie are everywhere. We don’t mind that at all, having Freddie as a part of our lives, even for a short period, was the most wonderful gift we could ever have hoped for. And we’re very happy to be reminded of that.

Much love, Martin and Natalie xxx

Chapter 41: The Littlest Soldier

Understandably, the blog is very focused on Freddie at the moment. Anyone who knows us well or speaks to us regularly will be well aware of the situation we find ourselves in right now, and in time, when we have more news to tell, we’ll tell that story. For now, I thought it was about time we told you a little bit about the smallest Carpenter.

Arthur finished his treatment back in January, same as Freddie, meaning he’s 6 months into remission. When Arthur was first diagnosed and we talked about timelines and I remember thinking October 2018 was going to be a big month. As Arthur is so young his options for treatment are limited should he relapse. However those options do increase a little when he’s 3 years old. This month was Arthur’s last scan before his third birthday – and we just found out the scan was clear. No sign of the tumour.

If you listen closely that was the sound of several thousand people breathing a collective sigh of relief!

It’s easy to forget, but Arthur is right now in the most dangerous period, relapse-wise. After a year the odds of relapsing reduce. And then continue to reduce further as time passes. We try not to think too much about the odds, but I’d be lying if I said it hadn’t been weighing on our minds recently. Even if we do have bigger issues in hand.

Arthur is doing brilliantly though. He looks great and his development is broadly where it should be. We’ve resisted getting his hair cut too. I guess we just enjoy the novelty!

The scar is thoroughly hidden too.

Arthur going to have a confusing time ahead. It feels very weird that he won’t remember any of this. He’ll likely never remember those nights in hospital. Won’t remember all the medicines, his Hickman line, being separated from his family for months or the time all his hair fell out.

He also probably won’t remember Freddie.

==========

October 2018 will be a month that stays with us forever. Not for the reasons I thought 18 months ago, but for something altogether harder. But somewhere behind the tragedy and heartache there’s also a little reminder that one little soldier battles on. And for that we’re eternally grateful.

Lots of love, Martin and Nat x

Chapter 40: Ugly Beautiful

Language is everything. When you first meet a palliative care team the language they use is very careful. There is a shuffling around, an awkward dance of tentative kindnesses. Slowly, with each meeting it gets more real. The language changes. Then people stop talking about ‘the situation’ and ‘Freddie’s condition’, until someone finally says “when Freddie dies……” It hits you like a million lightening strikes. You know what you’ve been talking about, you thought you might have accepted a tiny weeny bit. but it still feels like he who must not be named. No one really wants to say death’s name. Perhaps though, once the elephant in the room is out of its enclosure then you can start to get real. You can enter the ugly beautiful.

I thought I was already there. But it turns out I hadn’t arrived yet. Each day you seem to get a little closer. Each day it gets a little bit harder. The smiles are less, the frustration and pain are more. The person you love gets hi jacked by it’s unwanted hitch hiker. Each day another new medicine, doses creeping up and up. Another attempt to break the pain cycle and chase some peace. Every morning it takes longer to be comfortable and every evening the bed time gets earlier. Each day the irritation is more and the frustrations grow. Tantrums, Meltdowns, self harm and despair. Our heart are breaking and we are all worn.

This is the ugly.

But with the ugly comes the beautiful.

The endless cuddles. The wonderful endless cuddles. Don’t stop.

The meal that is right. The meal that is just what was wanted. Food is one of life’s greatest pleasures. All hail orange soup.

The sharing of colouring. Doing it as a team, together all the way. The pleasure of being in it, just the two of you, colouring against the world.

The kisses. All over my face. On my eye lids. On my nose. On my cheeks. On my lips. On my soul.

The brothers. Looking out for each other. Getting each other’s comforters, offering cuddles and rolling on the floor. It all blows up in two minutes.

The encouragement we give each other. We can do this. Your turn to cry. Your turn to be held. Your turn to be cross. We are together.

The visits in bed. An arm around you. The little boy in your bed with a rabbit called Rufus.

And then there is Arthur.

Our knight in shinning armour. He is the bravest of all 2 year olds. He is waiting patently. He has been through so much himself. Yet no one has mentioned his big days. He needs it shouting from the roof tops. Since January…. he is walking, talking and generally setting the world alight. No more grumpy potato! He moved out and the happy Buddha moved in. He has his Hickman line out back in June and he is loving life.

Thank you darling boy for making us smile when we think are faces are broken. Thank you for hugging Fred when he is so sad. Thank you for eating all our food. Thank you for singing in your cot. Waiting for your turn. You are our light. Just you wait, you will have it all.

Lots of love, Natalie and Martin x

Chapter 39: Hard Graft and Summer Blues

It’s been several weeks since the last post. There are a number of reasons why it’s taken us so long to put pen to paper, the biggest of which I’ll come on to later. I’ll just try to tidy up some of the loose ends from the previous blogs first.

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Let’s start with Freddie’s foot. In the end he did need a skin graft. He had to stay off it for a few days post-surgery but it has healed remarkably well ever since. There was a period when he could only wear one shoe and hobble about, but in typical Freddie style, he coped remarkably well and complained very little. Weirdly there was an upside to this accident – in particular the timing of it. Whilst his foot was healing he couldn’t start chemotherapy again (I guess something to do with the cells needing to repair themselves) so we ended up with our holiday window.

He couldn’t walk well, and getting wet was out of the question. We were also mid heat wave so everywhere was 35+ degrees. Being the middle of the school holidays and booking just 48 hours in advance the plus side was there was loads of availability and prices were very reasonable!

And that’s how we ended up in Copenhagen for 4 days. We had a great time. I could explain what we’re doing in this photo but it’s probably funnier if I don’t.

Copenhagen is an amazing city. I’d have never really considered it somewhere to go to for a few days, but I’d thoroughly recommend it. Very family friendly, well organised and lovely food. But since this isn’t a Lonely Planet guide, I’ll let you look into it yourself if you’re interested.

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When we got back we had a few days at home then we had a meeting at GOSH to discuss Freddie’s latest MRI results. Ever since Freddie’s relapse a couple of months ago, we’ve known at some point his tumour would probably return. There was a tiny chance it wouldn’t, but we’ve tried our best to mentally prepare ourselves for the day it would happen. We thought we’d at least have some time though and hoped this meeting would be little more than a formality.

We’ve come to realise that when you walk into a GOSH medical meeting expecting to see one person and there are several people in there, it’s because the news probably isn’t good. Therefore you can imagine the sinking feeling we felt when we walked into Freddie’s consultant’s office a couple of weeks ago to be greeted by a sea of new faces, none of whom were looking like they were holding in good news.

The MRI showed his tumour has returned.

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There’s little point dressing this up in any way. We were deliberately a bit vague last time Freddie relapsed, but since this latest news effectively removes any ambiguity from the situation, it’s probably just easiest if I explain exactly what this means for Freddie from here.

Freddie won’t have chemotherapy now. With the cancer as advanced as it is, it would serve no purpose. We also don’t want him to endure the side effects and extra strain it would put on his little body.

Freddie has now moved to palliative care. The focus of his care shifting from cure to comfort.

The team have tried to give us an understanding of how long Freddie has left. It’s very difficult but given the aggressiveness of the tumour they think it’ll be weeks. How many exactly, they don’t know.

I’ve known this a few weeks and I still can’t even write it down without reducing myself to a complete mess. We’ve known this would probably happen for a couple of months, but now it has it seems utterly unbelievable. I simply can’t imagine our lives without Freddie.

Or maybe I just don’t want to.

So what now?

The million dollar question! Our objective is to make whatever time we have left as fun, normal, and straightforward as possible.

As far as Freddie is concerned we’re just having a jolly old family summer together with a bit of extra medicine. All his treatment can be done at home, so weirdly his life is less topsy turvy than it has been for some considerable time. He’s not aware of any of this and we want to keep it that way. I couldn’t bare throwing fear into the mix at this stage.

Of course Natalie and I are utterly devastated. Every day is a struggle, acting as though life is normal in front of the boys, when it’s anything but. That said, I’d say under the circumstances we’re doing reasonably well. We’ve filled our time doing things Freddie loves which brings us a great deal of happinesses.

There’s plenty of ice cream, trampolining and an unhealthy amount of TV. Good parenting sort of goes out of the window at this stage.

We’ve got lots more planned. We don’t know how much we’ll get through or when it’ll become too much for Freddie, but we’re just taking it one day at a time. I’m not sure there’s any other way. If you see us, don’t be afraid to be normal though. There’s only so much sympathy a man can take!

So there we are. The lack of updates probably make a bit more sense now. Just putting all this into words is very difficult. Not least because I could probably write a million words and only scratch the surface of what’s going on in my mind. There will be plenty of time to sort my mental state out later. For now it’s about making one little boy feel like the most important person in the world. And thankfully that part isn’t too hard.

Much love Martin and Natalie x

Chapter 38: The Snow Leopard’s Paw

One thing that has really kept me going through this little family adventure has been running. At the beginning of our cancer journey Martin and I had committed ourselves to the Joe Wickes SOS plan in a bid to focus our attention positively and to generally become the gods and goddesses we know we probably could be. However, there is only so much “prepping like a boss’ one can do on an oncology ward, equipped with a fridge space the size of a shoe box and microwave. So after giving the HiiT work outs a run for their money, I returned to my old favourite; running. The great thing about running is you can do it anywhere, as long as you have a good bra and a pair of trainers. In fact, you may have seen me running around Russell square, round and round like a trapped rat. It requires little planning and you can do as many circuits as are required to get your endorphin fix and to mend your broken mind.

Part of running therapy has been the sound track that accompanies each run. Sometimes the tunes match my mood and I indulge the more heart felt, melancholy layers to my existence. Other times, I just tap into pure cheese to motivate and take me out of myself. In this way, it’s the sound track to our lives (with me as the DJ). Through my eternally optimistic eyes, I fully imagined that if this was film, as this point we would all be smugly running along a beach with Florence and the Machines’ ‘Dog days’, predictably playing in the background. Unfortunately, my inner Pollyanna has taken a hit and I find myself thinking that Avichi’s ‘Wake me up (when it’s all over)’ might be more appropriate.

Discovering Freddie’s relapse hit us both hard. Martin had barely returned to work. I had dared to attempt to re-enrol on my doctorate. We both knew relapse was a possibility and a reality, but neither of us expected it to arrive so quickly and so unannounced. Once we had patched up our little man from his brain surgery (an all too familiar process) we started the discussions around the next steps. These conversations were agonising. With such a little evidence base to work with, the ball was firmly in our court, meaning that we were left making the decisions to continue or not, with little steer from the professionals. This is a very scary place to find yourself in. Luckily we were firmly united in our views, which changed daily as we consulted different doctors. In the end, although we both believe in a quality of life, we just had to try the treatment that was offered to us.

The first part of this meant that we would have to embark on reradiating Freddie’s head. This does not come without huge risks, meaning that it was a painful decision to make. Luckily we have been supported by an amazing team at UCLH, who have shown the power of the play worker. Through the excellent preparation work that was put in and a huge sprinkle of bravery from Fred, radiation has commenced and Freddie is able to do this without being asleep. This is a huge thing for a (just turned) 5-year-old to do. Not only does he have to wear a mask covering his whole face, this is then screwed to the bed so he can’t move! He then lies still for the 5-10 minutes while he is radiated which is done on a room on his own. The first day he did it I was overwhelmed by his bravery and simultaneously saddened to my bones that he has to do this and not even for the first time. He just leaves me dumb founded; from the way he has accepted the new scar on his head (which he has named the zip), to bowling up to the radiologist to challenge him on his knowledge of yeti crabs. Little humans are amazing and should never be underestimated. It did help that they painted his mask as a snow leopard….

Snow leopards have become a bit of a theme. Freddie decided that for his birthday he would like a class fancy dress animal party. No sooner had he uttered these words, super Ali set to work in a bid to create the world’s greatest Snow leopard costume. I have the feeling some lessons were learnt, skills gained (darts and zips no less) and some late nights had. Thank goodness Freddie repaid this hard work with heart felt gratitude and delight, exclaiming that it’s was “the best costume he had ever seen”. PHEW!

As usual there was a flurry of stress preceding the party. Unusually, it was not linked to party bags and finger food. Three days before P day, Freddie declared that he was having funny feelings again. These funny feelings were what he had previous to his relapse, they indicated he was having seizures. Martin and I simultaneously recognised that punch in the stomach you get when you are going down that well-trodden path. We thought we had more time. GoSH were fantastic. Within a day he had an MRI, which showed that ‘things’ were stable. Thank you, thank you, thank you. This meant three things. I could enjoy my birthday (two days before Fred), Fred could enjoy his party and Martin would have to get on with constructing a trampoline.

Freddie has been looking longingly out of his window for months mooning over our neighbours play equipment, most noticeably their trampolines. Martin and I had declined that purchase for several reasons: lawn pride, trampoline related injuries and the ability to move in our garden to name a few. However, once you face a relapse situation….how can you say no? We imagined squeals of delight, we imagined him running out and bouncing free. It turns out a box of bath spruddles (a bath bomb with a sponge surprise in the middle) has the edge over an 8 ft trampoline. Who knew?

Freddie had a fantastic birthday. All his class mates came dressed as animals (on the hottest day of the year), a bouncy castle, pizza and a finale of an ice cream van. Of course his cake was a snow leopard (thanks cake hero Richard), which had the added thrill of being leopard print when you cut through it. It impressed me.

Freddie followed the party with his actual birthday which was an inset day at school. This came with the added bonus of another yummy lion chocolate cake (Jackie’s fine skills this time) and so many presents it took us two weeks to complete opening them.

I did buy thank you cards, I meant to write them. I REALLY love stationary. They are still in my bag. We had more surprises around the corner.

We made a promise to make each day as fun as we can for Fred and for all of us. Last Wednesday Martin, as usual, made good on his promise and took Fred out for a quick spin on the bike before bed. Freddie had completed three days of radiation like a boss. He deserved everything. Unfortunately, 5 minutes after they left I had a panicked phone call from Martin. They were coming back. There had been an accident. It was bad. I put down the phone, cried, heard Freddie crying from two roads away and ran up and down like a headless chicken. They burst through the back gate. There was blood, lots of it, oh no, oh no. We managed to get Fred in the car, give Arthur to amazing Maggie next door and ring ahead to A and E (who know us too well). When we got there, Martin had to deal with two wreaks. Freddie and me. Thank goodness Martin was there. He was calm, loving and reassuring, while I just dissolved.

It turned out due to a series of unfortunate details; wrong foot wear, 5 year old not putting feet where they should be etc, that while Freddie rode the front seat on Martin’s bike his foot got caught in the wheel at speed. Initially they thought it was a case for the plastic surgery team, who eventually turned it over to Chelsea and Westminster burns unit as a friction burn. This has meant this week we have added a forth hospital to our repertoire. After an initial Mexican stand off on Friday, the nurses offered Freddie some gas and air so he could get through his forth dressing change. I had some, then my wonderful cousin Pen had some (if you are low on super powers, she’s your girl…..you can’t be sad around Penny), then Fred decided it looked fun. He loved it. They even put a silver dressing on his heel. Situation saved and there started the first meeting of the giggle club. We had our second meeting today and are all looking forward to a reunion on Thursday.

Time will tell if Fred will need a skin graft. In the meantime, he has continued his radiation, continued to smile and continued to make us so proud. Martin and I may take longer to heal. But we remain resolute to keep living a fun life. Our holiday plans may change a little but we are good at being flexible. This strange life teaches you not to hold on to expectation and to find peace through acceptance of what you can’t change.

Snow leopards are very rare. So are 5 years olds with zips in their heads and silver on their feet.

Lots of Love Natalie and Martin xxx