Starting a new journey…
Starting our Leukemia journey…how did it all begin?
On Friday morning I raced home from the airport to be able to make it back in time to take Bilbo to school and H to nursery. Bilbo looked tired.
I picked Bilbo up at 3:30pm he wanted to ride his bike to the shop we got to the end of the road – he was tired. But he ate pizza and carrot sticks and went to bed cuddling me.
Rich and I settled in for the night to watch Stand Up to Cancer I love the celebrity gogglebox. I completed life admin, like booking our Santa visit and ordering the boys Christmas present (a new tablet each) and sobbed at the stories of kiddies fighting cancer.
On Saturday I lost my shit at Bilbo because he complained he was “bored” whilst shopping. The whinge turned to tears and he said his back hurt, I abandoned the shops. Bilbo slept the whole way home and then another hour on the sofa.
On Sunday Bilbo napped on the sofa whilst his brother napped upstairs, he got too cold at Bedford Oasis to enjoy the flume rides he’s now old enough to use.
I phoned 111 they said see your doctor on Monday for some blood tests.
Monday (Day 0)
On Monday we walked H to nursery. Bilbo came home and slept on the sofa for an hour and a half.
The doctor referred us immediately to the Pediatric Assessment Unit in MK.
The doctor at the hospital put in a cannula and took bloods.
I told them about the growing number of bruises Bilbo has, the small but regular nose bleeds he’d had this week, I explained his fatigue – I repeated he was a very healthy rarely ill little boy. He’s only had antibiotics once in his life when he had scarlet fever.
Rich and my mum agreed Rich would stay with Harrison and mum would come and sit with me and Bilbo.
Bloods came back and I was taken into a room. 2 doctors and a nurse – talk of odd blood results, I was trying to keep up and I was trying to recall biology. Things are unusual…red blood cells, white blood cells, platelets…
“Should I be worried” I asked.
“Too early to say, but we’re talking to specialists at Oxford”
I left Bilbo with my mum and went home to Rich, we packed stuff, fetched stuff and we made a plan for the next few days. I showered and took a cab back to the hospital. In my head I was thinking he’ll be fine – it’s just an infection some antibiotics will make him better.
I arrived at MK the doctor took me to the room again…he looked at me, I stared back and then he said “we think it’s Leukaemia”
I felt nothing – my mouth was dry I said the words back to him “Leukemia?!? Are you sure”
Of course with everything he explained they needed to further test the blood to know more and explain more and inform the next steps. But right now the plan was to head to Oxford.
Bilbo was in and out of sleep, he was tired it was 11pm.
I phoned Rich and shared the update, phoning people and sharing our shit news is something I’m all to familiar with now. My mum and I tried to keep it together whilst we got ready to move.
We were blue lighted to Oxford – our ambulance crew nurse and doctor were fantastic. Respect to the driver who chatted the whole way and kept me from sobbing the whole way.
They say nothing prepares you for this, it doesn’t! They say everyone behaves or acts differently, they do!
I can tell you now some of what has gone through my head is insane and makes no sense. But hey ho it is what it is.
We’ve begun to tell close friends and family. I’ve let my work colleagues know, it is only in this moment in this madness I realise just how many people love and care about us.
And so it is for this reason that I’m going to hijack our travel blog and update it with our story, our updates and our journey. We may not be travelling very far for a while but there are so many people who want to know how Bilbo is, how we are and what happens next.
What we know so far:
- He has ALL (Acute Lymphoblastic Leukemia)
- It was caught as early as possible
- We are in the very best possible hands
- There is a long road ahead – it’s going to be hard on everyone in our circle but it’s going to be hardest on Bilbo
- He will start chemo tomorrow
Our advice for family and friends:
- Talk to us
- Ask us questions and don’t feel like you’re bothering us or asking silly questions
- Don’t google leukemia …Bilbo’s journey, treatment and experience will be personal to him so google isn’t going to give you the answers, our team of doctors will so please ask us and we can ask our experts.
- Don’t be afraid – we’ve got this, we’re strong and will be there for Bilbo every step of the way! And he’s fricking awesome and right now he’s taking it all in his stride and with a big smile on his face. We’ve never been more proud.
We’ve started a campaign in Bilbo’s name: #Donate4Bilbo
We’re asking people to donate blood or donate money to Clic Sargent.