1 week on…

And what a week it has been!

Biscuit Decorating

This time last week my mum and I were by Bilbo’s beside as we had tests done, cannula’s added, frantic calls to Rich, scary meetings in offices with doctors and nurses. As I sit here and reflect it feels like an eternity has past, but the reality is we have only just scratched the surface on the journey.

Let us dare to believe that Bilbo’s journey will be smooth, we’ll follow the path of least resistance then we have 3 years, 36 months, 156 weeks, 1095 days, 26280 hours until this hell is over. I’m struggling with this most today. Largely because i’ve started to take the time to really get my head around what the journey ahead will entail.

We’ve loved being home

Based on the last few days you could be mistaken for thinking this is just a bad dream, Bilbo looks tired but we’re home and we’re doing normal things.

But cancer is still there lurking and turning everyday life to shit. Bilbo woke up this morning thirsty and was then immediately sick. It may have been a coincidence but we never know what is cancer and what is just normal (is anything normal now).

Then Bilbo ordered “a volcano dippy egg with soldiers and i’d like pancakes on another plate by the side” eggs are his new thing, it is all he wants to eat. This makes me chuckle because when I was pregnant with him I craved eggs. The sandwich bar in our 80 Strand office served me an egg mayo sandwich everyday for most of my pregnancy, I couldn’t get enough. He’s also eaten almost half a cucumber and a pot of roasted pepper hummus. Despite the steroid hunger, he is looking very thin.

My heart broke this morning as Rich and I ran around getting ready to leave the house getting H ready for returning to nursery and then Bilbo said, “i’m sad mummy, I won’t have friends anymore” F**K You Cancer!

We didn’t get to decorate Halloween biscuits last week, so we did them tonight.

This is why the visit from the Kearns today was so important to see Bilbo’s face light up when his friend Dillon arrived made my day. They decorated Halloween cookies altogether. We also got to see the fireworks and hang with Bilbo’s nursery friend and neighbour William. Hearing them shouting and being excited was wonderful.

Team Firework Gang

H was not enjoying the fireworks for the first half then he loved it…

Enjoying the fireworks

However as the fireworks kicked off and we all watched the sky light up, my tears started, we’ve been so many years to watch fireworks, Bilbo hasn’t had to enjoy them in a buggy since he was 2. I stood there thinking about how our life is upside down, everything has changed and the worst bit it is going to get so much worse before it gets better.

So what has been achieved today?

  • We met with Bilbo’s teacher and head teacher. We’ve got some guidance on how to keep Bilbo on track and we were delighted to hear that there are ways he can stay in touch and remain part of his class. So grateful for modern technology, can’t wait for him to have calls with his class and engage with them.

Learning all about phonics

  • I’ve had a flu jab – it hurt, a stark reminder of exactly how brave Bilbo has been he’s had multiple needles over the last week.
  • My mum and I made a trip to The Range. We’ve bought some new storage, firstly for all the craft stuff we have. Since our home will be Bilbo’s HQ for the next few months, being able to organise and find things for him to do easily gives me comfort. We’ve also picked up extra boxes to keep all the different things we need to now have in the house to help Bilbo from medical supplies, to hygiene items to keep germs at bay.

Crafting organisation

  • I had snuggles on the sofa with Bilbo and a nap – it was bliss
  • We decorated cookies
  • We watched the fireworks
  • We signed up to Hello Fresh so dinners are sorted for all three of us each week! (fancy trying it let me know I can hook you up with a discount code)
  • Rich went to Costco to buy industrial quantities of antibacterial wipes and dettol spray
  • We let my mum loose using the label making machine

The BIG C

And my mum, Rich and I have all been digging into what we’re actually facing. And I’m not going to sugar coat it, it is f**king terrifying. This is where I started today: Phases of Treatment we are in the induction phase. What has horrified me is that after that we have consolidation therapy,

Consolidation treatment takes between 3 and 10 weeks, interim maintenance 8 weeks and delayed intensification takes around 7 to 8 weeks.

And then maintenance therapy.

I was in denial the last few days. I think seeing a relatively normal little boy enjoying relatively normal things over the last few days has made me think it is all going to be a little easier than it actually is. I was even talking to Rich and my mum about what work could look like after Christmas… I KNOW I AM MAD!

And so that is why i’ve avoided the research and the cancer support websites and groups because I didn’t want to know, but as we face the next 3 days head on, it is time to dive into what this is all going to really mean for us.

Tomorrow we meet the Milton Keynes team who will support us including our local oncologist consultant the lead cancer nurse for MK and some of the community team.  And then more treatment and procedures in Oxford.

Very grateful to my mum who will be holding the fort in MK for the next couple of days.

I will update how we get on over the next few days at the weekend, we’ve got a lot to get on with and Bilbo needs are full attention. Thank you for all your support this week, the outpouring of love has really helped us get through the first week of cancer BS!

via GIPHY

 

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2 Responses

  1. Justin says:

    Though many of those days and hours will be unimaginabley stretched-out for you all, you are right not to dwell too much on the rest of the journey. Focusing fully on today, tomorrow is not denial, it’s exactly right of you to focus 100% on what needs to b one today. Humps in the road are coming, yes, but brace yourself for those just before they happen only – otherwise you will go insane. Trust those who know to guide you. Thanks for the update!

  2. Nikki says:

    A friend shared your blog as your son has just been diagnosed with ALL.
    My son finishes treatment next month, it’s been a tough ride for him.
    I want to say it does get easier, but things never go to plan and having to go to local hospital all the time.
    Your son is strong and will get through this, it’s hard and knowing what medicines to give your son.
    I wish you all my love and hugs.
    There is support groups on fb for ALL so your not alone x

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