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Bilbo's Journey

Day 617: The Halfway Point

 godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, maintenance, covid-19, halfway
Racing to the finish line…617 days to go!

Today marks the halfway point for Bilbo’s treatment. We’ve been officially fighting cancer for 617 days and Bilbo’s treatment will continue for another 617.

Right now the finish line is Friday 18th March 2022.

Back To The Start

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Ickle Tickle with nanny to wind down for bed time, little did we know it would be another 3 hrs before he actually rested.

As I write this I have an overwhelming mix of emotions. I can’t help but think about the lead up to diagnosis, I wonder how long my baby was fighting cancer all by himself before we noticed; before I called 111 and finally saw a doctor, before we were rushed to the assessment ward at Milton Keynes hospital and then blue lighted to Oxford to get the treatment he desperately needed.

I vividly remember being told those haunting words, “your son has cancer”. I recall staring in disbelief at the doctor and nurse. Feeling sick to my stomach knowing (or not really knowing) what was ahead. Holding back the tears as I knew I needed to go face Bilbo with a brave face. Having to call Rich and let him know our baby was really poorly.

Facing my mum as I came out of that room was gut wrenching, she was sat by Bilbo’s bed and she knew. And we both knew we had to keep it together for Bilbo when all we wanted to do was cry and hold each other.

In just a few minutes our entire world came tumbling down.

My Child Has Cancer

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This is the reality of cancer. This photo shows the heartbreak, the fear. A big F you to cancer, I hate you for what you have done to our family!

Starting a new journey…

I think about those early days a lot. And the hell we went through. We were overwhelmed, there was so much to digest and take in. And at the centre of it all was a 5 year old little boy.

Over the last 617 days our brave, amazing and courageous boy, Bilbo has been the one fighting this bastard disease and he’s done it with grace, with determination and with such positivity. Even at some of his worst moments, when he’s been most afraid or in pain. He’s always tried to put on a brave face. And we couldn’t be prouder of him.

Cancer in Numbers – Halfway

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This is what cancer looks like… a lot of waiting around. Instead of being at home snuggled on the sofa watching films we’re waiting to see if there are side effects from an injection. Instead of spending time together as a family our boys are split between home and hospital. Instead of walks along the canal or country park, we’re scheduling appointments and waiting for bloods. Cancer sucks, cancer ruins lives, cancer pisses on your chips!

As we reach the halfway point here is what Bilbo’s cancer treatment looks like in numbers, we’ve travelled 3690 miles backwards and forwards to Oxford. And Bilbo has had:

  • 5 Bone Marrow Aspirates
  • 466 Doses of Chemo
  • 68 Community Nurse Visits
  • 73 Doses of Steroids
  • 48 Dressing Changes
  • 1 Ambulance Ride
  • Lost his hair twice
  • 9 antibiotic infusions
  • 3 month course of Antibiotics
  • Antibiotics EVERY weekend
  • 10 Nights being an inpatient
  • 3 Fevers/Isolation
  • 1 Hickman Line placed and removed
  • 124 pokes or blood draws
  • 15 Lumbar Punctures
  • 18 Anaesthetics
  • 2 Surgeries
  • 2 X Rays
  • 8 Blood Transfusions

How’s Bilbo doing?

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On the surface Bilbo looks amazing. We are speeding through Maintenance, we’re ticking off the days and weeks without incident. And it is probably the normality of life (i’m choosing to ignore Covid-19 for the moment) that often leads us into a false sense of security.

The reality, Bilbo is still a little boy dealing with the very real crap that comes with cancer. Just this weekend we’ve been dealing with the most frustrating part of cancer -side effects. Specifically Bilbo’s taste buds and sensitivity to food. We’ve had a relatively easy run over the last few months, however in the last couple of weeks we’ve attempted to drop the odd anti-sickness to see if it is still needed.

Tastebuds – AGAIN!

Why would would we mess with Bilbo’s anti-sickness you might be thinking?

Well ideally Bilbo wouldn’t be on anti-sickness twice daily for almost 2.5 years. No one wants Bilbo to be on medication he doesn’t need. So from time to time it is important to see if it is still needed and not just placebo.

Sadly for Bilbo he does need it. And as a result of our experimenting he’s been ultra sensitive for the last couple of weeks to taste and smell. He already had a very limited diet and in the last few weeks some of the staple foods he enjoys and go to meals just aren’t cutting it any more.

On Saturday we faced the usual standoff. A plate of food he doesn’t want to eat. Me frustrated at the wastage and frustrated with the situation. Me knowing that sometimes he’s surprised by something and actually likes it, willing him to try.

And then the painful reminder as he pulls the face, the face of a little boy trying so hard to want to eat the food in front of him. Trying his hardest and being revolted by how it tastes or feels in his mouth.

Any parent who has to deal with a child with challenging eating habits will know how hard it is. How utterly exhausting it is trying to find something your child will eat. And how tiring it is when the goal posts keep changing.

It breaks my heart to watch every single time.

Emotions Running High

And emotions are running high. I am blaming Covid-19 for our current phase. Like everyone we’re frustrated with the lockdown. We’ve spent most of the last 19 weeks shielding. Bilbo and Harrison have both missed school and pre-school. 15 Weeks Of Isolation

We’ve ridden the Covid rollercoaster, we’ve had the highs and lows. We’ve made special memories, appreciated the slower pace and enjoyed quality time as a family. My mum has saved all our sanity by taking care of the boys in the day so Rich and I can work.

Nanny school has provided the boys with stability and routine. They’re very lucky.

Taking Its Toll

But the last few weeks the boys have been resisting going. We’ve had tears, we’ve had tantrums and we’ve had a lot of frustration. They love going to my mums and always have fun. But they are rebelling, they’re frustrated and they’re trying to take back some control in the way kids do.

They miss their friends, they miss the interaction with others. I get it – I do too. We’re a sociable family it makes sense that the boys would feel challenged by the lack of human interaction.

Each morning has been starting with Harrison listing one of the three friends he is missing the most. Bilbo has been less vocal about missing his friends but he’s been quietly brooding.

Bilbo’s Frustrated

Bilbo’s frustrations have been coming out in the form of nightmares. He’s been grumpy. Bilbo has also started to associate going to my mums as Rich and I not having time for him. He isn’t equating the time at Nanny’s as replacement for time at school. And he keeps saying we’re too busy all the time. He is probably right. The kids get home and we only have a few hours with them.

Over the last 19 weeks we’ve only had a few days off here and there. But like everyone in the country/world that time off has been spent at home. And when we’re at home there is always something to do.

In truth we’ve not given the boys the time they deserve. We’re probably like most parents right now feeling guilty and worrying about what damage this whole situation is having on our children.

Finding The Positives

And then we have days like Sunday. When we make the decision to focus on us, we packed a picnic and with lockdown easing, we were able to head to a wonderful park to explore. Both boys loved it. We all loved it!

Harrison surprised us all by walking a pretty long way without moaning. On the promise of ice cream.

How Am I Doing?

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I feel relieved that we have reached the halfway point. But I still teeter on the edge from time to time. It can be the food challenges we experience. It can be the very real worry that at any point the rug can be pulled from under us…relapse, fevers with hospitalisation and now Covid. I know the worry will never truly stop, i’ve just learned to manage it or hide it.

I try to remain positive.

I try to focus on what i’m thankful for. It is important to me to show gratitude every day for Bilbo’s health and for how far we’ve come. I am grateful that our cancer journey hasn’t been as hard as some.

But I am human and from time to time the cancer gets me. It still finds a way of punching me in the stomach and knocking the wind from my sails. It still hurts. It still haunts me. And I still fucking hate it and wonder why Bilbo, why did our baby get it?

Covid

Covid has obviously added an extra layer of complexity to our lives. We are listening to the experts, following the science (when we can) and we way up the risks. But it is incredibly hard.

I won’t go into the politics of it here. But what I will say as a family who has shielded. I feel let down. Let down by the government and all the selfish people who are taking a very selfish and individualistic view of this pandemic.

When you don’t wear masks or rush to get back to your “new normal” your choices, your decisions your lack of following the guidance has a knock on impact on vulnerable people – vulnerable people like Bilbo.

Managing The Worry

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Since diagnosis I have tried to focus on what was within my control. What wasn’t, I processed through this blog. But over the last few months i’ve not felt like writing about how I feel. The words don’t flow like they did. Thinking and talking about cancer irritates me. I am angry that we still have so much time left on treatment.

Only reaching the halfway point now has been a huge reminder that this has been like a sentence for our family. 3 and a half years…almost all of Harrison’s life on this earth. For another 617 days we have to count out the tablets, have Bilbo’s fingers pricked and put him through lumbar punctures every 12 weeks still.

And for some moronic reason whenever people ask me about it I tell everyone all the time i’m “fine” “we’re lucky” “we’re OK” “we’ve got this”

YES we have “got this” because I literally have no fucking choice but to deal with it. Put on the brave mask and pretend every day that everything is OK.

And do you know what it isn’t OK. In the last few months I have gone back to worrying endlessly about EVERYTHING! So many different things, not just cancer related. I am overwhelmed by my own thoughts daily, my concerns for our community, our world and all the issues we currently face.

It is incredibly exhausting and I currently survive on very little sleep!

Halfway

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Love is…this picture

Despite the ups and downs, today is our halfway point and I am feeling grateful that I decided to mark it by taking the day off of work and planning something fun. Writing this post has stirred up some very raw and real emotions that i’ve been trying to suppress and largely ignore.

I will deal with them. I’ve found some new coping mechanisms for self care and as ever I am a working progress – a story for another day.

Today 7th July 2020 is about survival, today is a celebration. We will be spending it at the zoo with my mum. Not thinking about cancer or the next 617 days.

We will be focusing on living, making memories and being thankful for what we have and how far we’ve come.

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