Day 196: Holiday – Part 2
On Friday I was in a hurry to update everyone. I wanted people following our story to know we’d managed to have that holiday we so desperately needed. You can read the full post here: Day 193: Holiday – Part 1
But it only scratched the surface in how much the few days away meant to us.
Since the 29th October 2018 our life has been different. We have cancer worry that weighs on our mind minute by minute, hour by hour. Cancer consumes our family. It defines who we are, what we can do. And it has certainly clipped our wings and changed our path.
But for 5 whole days we felt normal.
A Break From Cancer
And so for the briefest of time we were just a family on holiday.
We weren’t the cancer family. Visibly with Bilbo’s hair growing back and the fact he wore his fisherman hat most of the time means you can’t even see the signs of leukaemia.
Bilbo’s appetite came back with avengence, I think his most overused phrase was “i’m hungry” and it was a joy to see him try new things and tuck into a plate of food and enjoy it.
And the fresh air brought back his energy too. He had that in spades.
New Cornwall Adventures
Whenever we visit Cornwall we visit our favourite places and we always try to see something new. This holiday was no exception.
We visited family in Hayle, the boys enjoyed exploring the beach and watching a helicopter.
We went back to Plymouth and the boys enjoyed the aquarium with Grandma and Grandad. We also enjoyed a visit to the wonderful Rockfish.
The Lost Gardens Of Heligan
This really was the most unexpected treat. It is a place of immense beauty and we were blessed with wonderful weather too.
Giants heads, a playground made of tree trunks, bluebells, jungles and rope bridges, farm animals rounded off with delicious food and ice cream.
We were grateful for the trailer as Bilbo got pretty tired from the hills. And Harrison is still a lazy little monkey who’d much rather be pulled along than walk.
Spending time as a family has also brought the boys closer together. Their friendship and their love is a beautiful thing to watch. Bilbo’s vivid imagination is rubbing off on Harrison.
They invented a game of time travel in the flat. They decided the porch was a magical time machine allowing them to travel through time to fight off zombies, dinosaurs and pirates.
They dressed up as superheroes and pirates. They chant songs, they cuddle and give each other lots of kisses.
It makes my heart swell to see this and i’m grateful we were able to give them this time together.
Never Travelling Light
The only way you’d know we aren’t a normal family is the amount of baggage we travel with. Despite Bilbo being off chemo. We still travel with all the cancer paraphernalia.
We also had a ready packed overnight hospital bag in the car “just in case”
Grandad’s 60th Birthday
And to top off a glorious week, the finale was a day at Chessington to celebrate Grandad’s 60th birthday. We were joined by Uncle Gavin and took full advantage of the new Room on the Broom and a VIP giraffe feeding experience.
We’re big fans of Chessington the boys are BIG fans of the Gruffalo ride and were very excited to share this with grandad and Uncle Gaggin.
How’s Bilbo doing?
Bilbo is doing really well. We couldn’t have asked for his health to be in better shape for the week away. But over the weekend he’s started to get a runny nose and as Monday has loomed, the sense of trepidation about the next phase of treatment naturally returns.
We’ve been doing a lot of talking too. The last two trips to Oxford have been traumatic.
Bilbo’s anxiety about the treatment he is having, the sleepy medicine and having his dressing changed have weighed heavily on my mind.
So we’ve been working on building him up.
And surprisingly his bravery to ride the Vampire ride at Chessington has given us something to leverage.
Bilbo the Brave
We’ve talked about how if he is brave enough to ride the vampire ride having a dressing change is a walk in the park.
And on Saturday when Victoria came to take Bilbo’s blood and change his dressing. He didn’t murmur. In fact at one point he even laughed as he said the cleaning wand tickled him.
And today he didn’t get upset when he went for his lumbar puncture. We used a similar tactic and his doctors and nurses have made a big deal about how brave he is.
However as we headed into the treatment room I could feel his little body tense on my lap. But there were no tears. On Sunday night he told me that if he felt scared he would close his eyes tightly. And that is exactly what he did.
As he sat on my lap with his eyes shut tightly, they administered the sleepy medicine into his wiggle.
I couldn’t have been more proud of him.
Every time we’ve started a new phase we accept (well I try to) that we have no control over what will happen in the weeks that will follow. And this is where we are right now.
Bilbo may end up neutropenic (when his immunity is at his lowest and he’s most susceptible to infection and temperature spikes) but the treatment will continue over the next 4 weeks regardless. Only then will we have a treatment break for his counts to recover.
Then we start the second half of this block and then we’re done.
It All Sounds So Easy…
Of course i’m only writing about it. I don’t have to fight it, that is all on Bilbo. And we know that whilst that will be the end of the frontline treatment he still has a long way to go in terms of getting to the end.
As of today we’re 1039 days away from the end of treatment.
Tomorrow Bilbo has two lots of chemo and we start steroids again. On Wednesday he has his peg injection.
And what is getting us through is knowing that over the coming weeks we’re scratching off some of the treatments for good.