Day 187: Interim Maintenance – CHECK
On Monday it will be week 8 of interim maintenance. Week 8 is a treatment break so we’re done! And Bilbo has smashed it. You can refresh your memory on what interim maintenance means in our quick links and resources.
How’s Bilbo doing?
Interim Maintenance has been better than we’d expected. We prepared for the worst regarding the treatment and planned accordingly. Bilbo has been dosed up daily with anti-sickness. We’ve focused on his oral hygiene. We have an entire team of people helping keep Bilbo eating and reducing the weight loss.
Today Bilbo looks tired, he has dark circles and he’s thin BUT he’s thriving.
Living His Best Life
My mum and I were talking yesterday about how Bilbo seems to have made a real leap forward developmentally. Something has clicked…
He’s loving reading, writing and drawing. He has asked why doesn’t school open on a Saturday as he wants to learn every day.
He is fascinated with numbers, building things, telling stories and helping people.
This week we have discovered Bilbo has been putting on puppet shows not just for his class but the entire Foundation 2. Even his headteacher managed to catch his first one on Thursday.
Today we bumped into one of his classmates at a Lego event, he isn’t in his actual class and he said ” hey Bilbo I loved your show yesterday”
We didn’t know he had it in him…i’m blown away.
Managing Food
I touched on the challenge we’ve been having with food in my last blog Fish Pie. And the last week has been challenging but we have a team of people getting Bilbo through. Rich and I have done the lunchtime run. My mum offers picnic selections after school.
And I’d like to say a huge THANK YOU to Bilbo’s teachers for getting him back eating at school with his friends.
I think Bilbo has appreciated coming home to eat but he misses out on break time with his friends by being with us. By the middle of this week Mr Tilley had convinced Bilbo to stay on at school.
And on Wednesday he ate 2 nice big portions of chicken curry and we haven’t looked back. We do have an emergency jar of marmite at school now, in case the menu isn’t to his liking – it is good to have a back up!
What next?
We have some challenging times ahead. Bilbo has the last block of treatment to get through ahead of maintenance. This is the final chance to throw everything and the kitchen sink at keeping the leukaemia at bay.
It also sees the return of steroids and some chemo we haven’t had since the beginning
So for those who are into numbers this is what it looks like:
- X3 – Lumbar Punctures with methotrexate (chemo) (these will continue through maintenance every 12 weeks)
- 2 weeks of steroids
- X5 vincristine (chemo)
- X3 Doxorubicin (chemo)
- X2 Peg (chemo injection – can’t wait for this to be over)
- X1 Cyclophosphamide (chemo)
- 2 weeks of 6-MP (daily chemo) (these will also continue throughout maintenance daily they are given orally in a syringe by me)
- X8 Cytarabine (chemo given by the nurses at home)
When you write it down like this, sometimes it blows my mind!
Decisions
We also need to start thinking about how we will cope with maintenance. We know we want to get rid of the hickman line (wiggle) BUT we have a lot of steps to walk through to decide what our alternative is.
Option 1 – take wiggle out, check bloods through finger pricks. Use gas for general anesthetic.
Option 2 – take wiggle out, check bloods through finger pricks. Use cannula for general anesthetic.
We will check these options are viable whilst Bilbo still has his wiggle. I fear Bilbo isn’t going to be able to cope with the cannula or finger pricks so our other alternative is option 3.
Option 3 – an implantable port. This isn’t ideal but it may be the least stressful for Bilbo when you consider how anxious he currently is over dressing changes and having a general.
How am I doing?
Not going to lie it hasn’t been an easy few weeks. In fact I found a draft post I hadn’t finished titled “The Tears Keep Falling” and it was true the day I wrote that draft I was sitting at my laptop bawling my eyes out.
Writing the post was probably enough to help me in that moment but i’m going to leave it there as a reminder of how bad it can be so I can appreciate the contrast when it is good.
Lots to celebrate
Over the last few weeks there have been plenty of reasons to celebrate. We’ve enjoyed weekends with family and friends. The boys are closer than ever and are really starting to play together.
I’ve been able to enjoy work and even made it into London twice this week.
And tonight as I finish writing this post, our car is packed, our clothes are laid out and unless something goes horribly wrong in the next 6.5hrs we’re off to Cornwall for a break. Lucky for us Bilbo has asked Nanny to look after the house!
The boys are ecstatic, Rich and I are can’t wait for a change of scenery.
