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Bilbo's Journey

Day 272: The Wait Is Over

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Happy Birthday Harrison! We love you with all our hearts!

In the Godber household we’ve been waiting for two very important things and the wait is over!!!

The Wait Is Over: Harrison Turns Three

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Look how grown up he, can’t believe we have a three year old!

First up Harrison turned three! It has felt like we’ve been waiting for this since my birthday in May. In our house we always say “and who’s birthday is next…” and so we’ve been counting the days down for the best part of 68 days.

And the last 2 weeks have been intense…but well worth the wait. Harrison enjoyed a day with nanny and Bilbo on his birthday. And yesterday we celebrated with a party at the house (despite the torrential downpour most of the day)

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Very last minute purchase to solve for the rain…the Godber family party come rain or shine! And now we have have a superb shelter for all the camping we are planning – roll on camping rain or shine!
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This cake was delicious Sharmaine made our wedding cake and made Bilbo’s 3rd birthday cake. Her cakes are delicious and hold a special place in our hearts! https://www.facebook.com/Truly-Gorgeous-Cakes-150638859978/

This last year has been tough on him. Being two is tricky – being two when your brother has cancer is extra tough. He’s a smart kid and he’s seen a lot. Even tonight when I mentioned the nurses are coming tomorrow he said “Bilbo better now, no more hospitals”

He knows that his brother has suffered. And Bilbo is life for Harrison. He loves his brother deeply and unconditionally. I hope their bond never falters and they remain this close for life.

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When it is 38 degrees and the house feels like an oven no one is sleeping! so we might as well be silly!

The Wait is Over: Maintenance

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These three were deep in conversation and enjoying lots of lolly/ice cream/farm/life chat!

And the other thing we’ve been waiting on the green light for is maintenance. At this point we believe we will be starting on Wednesday. Bilbo will have bloods first thing tomorrow and then we will head to Milton Keynes for clinic.

A quick reminder about maintenance: this is the final phase of chemo but the longest. Bilbo will be having chemo from Wednesday through to March 2022. The protocol we have is from the UK trial so we do not have pulses (vincristine and steroids) this leaves Bilbo taking daily chemo every day, a weekly chemo and then a lumbar puncture every 12 weeks.

Once maintenance is underway we can get Bilbo booked in to have his hickman line taken out.

How’s Bilbo doing?

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Bilbo finished school. He went out on a high, on the right was his first day, on the left is Bilbo on his last day of F2. Love Him!

He’s doing great. Three weeks of no medicine has been great for him. He’s appetite is back, he’s full of energy, he’s happy. He has colour in his cheeks and he’s got a jam packed summer holiday planned.

My mum is looking after him through the summer and week one has seen him go exploring and make new friends.

I’m so grateful that we were able to get to this point in his treatment for the summer. And I pray that we continue to have luck on our side for the remainder of his 6 weeks holiday.

How am I doing?

I am up and down. I worry about what maintenance is going to be like. There is a lot of talk about how it will be easier. It is gentler. Our lives should be a lot more normal. I WANT this, I want this so badly. But I also know cancer is incredibly unpredictable.

Over the next few weeks we need to toggle Bilbo’s dosage to get him on the right amount for what his body can tolerate. This scares me.

Whilst he still has his wiggle, there is always a risk for him. We saw that last week with the hospital visit, which was a stark reminder of how quickly things can get scary, Day 260: Too Good To Be True

Rich is away this week with work and next Monday I have a planned business trip to Boston. The trip is giving me anxiety.

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This photo is so significant, when I see it on my instagram grid it makes me sad. This was the last picture I posted before our diagnosis. I was walking home from a bar along the waterfront of Hoboken. The moon made NYC look like this shimmering magical skyline, it was surreal and this photo doesn’t do it justice. I had so many hopes, dreams and plans. I miss that woman, that mummy, that person. Cancer has changed me so much, i’m not the person in that picture and I never will be. I don’t know her anymore.

My New Normal

I am learning to live with my anxiety, but what scares me most is how dehabiliting it can be.

It isn’t just a mental thing, it isn’t just in my head it manifests itself physically too.

In particular I feel a tighten from my stomach and up through my throat. I feel like someone is sitting on my chest. My stomach churns with a feeling of adrenaline butterflies and emptiness.

And the anxiety for this trip is more than just worrying about Bilbo. I have nothing to worry about, Rich is home, my mum is around and we’ve brought in additional back up with Rich’s mum and step dad. He will be fine.

Mummy Guilt

It is me, it is my head it is knowing the last time I did this trip when I came home my life was turned upside down. It is reliving those memories, when the taxi pulled up at the house and I jumped out to make the school run my gorgeous boy wasn’t well.

The mum guilt I will take to my grave that if I hadn’t been so busy that month of October I might have seen the signs sooner, I might have got him to a doctor earlier. Maybe if we’d got it earlier Bilbo would have had the regimen A protocol and not the regiment C.

It will be fine, I’m sure and i’m looking forward to the trip. The mummy guilt these days comes with an extra side of cancer guilt. But the reality is it is part of lives for the next three years so we need to learn to live alongside it. NOT let it dictate our lives. And of course the truth is cancer is a part of our lives forever now. We’re forever changed by it and it is forever a part of us.

4 Comments on “Day 272: The Wait Is Over

  1. Hi Godbers. I have been following all your posts over the last traumatic months. I don’t normally post comments because nothing is adequate to tell you how much I feel for your pain. Im probably being equally ineffectual now but i remember that little girl I used to live next door to and how strong you have been. So no likes or loves on your posts because nothing seems appropriate but I am with you all the way. Love to Nanny x

  2. Kim, you Bilbo and your family are always in my prayers! May God bless you all! Lots of love to all!😘💞🙏🙏🙏

    1. Thank you Alyson!!! I always appreciate your comments!

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