Day 481: Maintenance Cycles

We have 753 days of treatment left, Bilbo has completed 481 so far. We’re currently in Cycle 3 of 11 maintenance cycles. And our end of treatment date is set for 18th March 2022.

Lots of people ask me where we are on Bilbo’s treatment cycle. And they are still often confused that he needs to continue with chemo for so long. I thought it would be helpful to do a quick refresher on what a cycle looks like for us. And what normality looks like for us.

12 weeks

Each cycle lasts 12 weeks, in that time Bilbo completes daily and weekly chemo. These come in the form of tablets which Bilbo takes before bed. On a Wednesday Bilbo takes his weekly chemo.

On week 3 of the cycle Bilbo has a lumbar puncture. They do this procedure at Oxford on the Kamran ward.

Children have these done under a general anaesthetic. And because Bilbo doesn’t have his Hickman Line to put the sleepy medicine into, he uses gas to go to sleep.

During each cycle Bilbo has blood tests every 2 weeks, these blood tests keep an eye on Bilbo’s neutrophils. This number is important because it is an indicator about how the chemo is working. If they go too low he is in danger of becoming neutropenic and if they go too high the consultants have to look at the strength of his chemo and reduce it accordingly. Through cycle 1-3 our consultants have played around with his dosage and it can change at any time.

Chemo Clinic

All of this is discussed with our consultant at chemo clinic once a month. We attend the clinic in Milton Keynes.

Bilbo is weighed, measured, he has his pulse checked, his blood pressure taken. Our consultant also gives Bilbo the once over. And we can use this time to ask questions bring up any issues we are concerned about. And we go home with a bag of Bilbo’s medicine.

Pulses

We are also often asked about why Bilbo doesn’t have pulses. Pulses are given to children as part of the standard ALL protocol. The consist of a week of steroids and a dose of vincristine a type of chemo.

When Bilbo was first diagnosed, we opted to be part of the clinical trial. Bilbo was selected for standard capizzi without pulses in maintenance. This means he doesn’t have steroids or vincristine.

It is because he doesn’t have the vincristine that we were able to have his hickman line taken out.

Side Effects

Ever since Bilbo was diagnosed we’ve always had to deal with side effects and maintenance is no different.

I’ve talked often of how nauseous Bilbo gets with the daily chemo. We currently have it under control with anti sickness in the morning and the evening. But over the last couple of weeks we’ve been noticing him complaining of feeling sick a bit more often. Even tonight he has complained that his jacket potato, the most inoffensive type of food smelt weird – he didn’t eat it.

And this happens a lot.

He wants and asks for food – then he doesn’t eat it. We have food in the fridge Bilbo can’t stand the smell.

Aches and Pains

And over the last couple of weeks Bilbo has been complaining of aches and pains. And as cancer parents you immediately worry.

Except Bilbo is also a 6 year old boy. One who has grown 2cms in 3 months. His feet have grown, his legs have grown and his torso has grown. He’s leaped into age 8 clothing. “Gowing pains?” could be… but I know only too well that you can never be too careful. So instead we worry, I make a note and we bring it up at the next chemo clinic.

Even tonight i’ve checked in with my mum (Bilbo is on a sleep over) he was complaining his legs and arms hurt yesterday. Today he was at kids club, running around and trying to keep up. Mum said he was tired and said his legs ached…my heart sinks as I worry is he over doing it? But then Harrison complains his legs hurt when we walk to nursery so am I being over protective?

And this is the reality of my daily mental battle…

Trying To Be Normal

And we do try to keep things as normal as possible. Bilbo does do PE, he has swimming lessons. He has started dancing with Harrison at the weekend and wants to learn backflips at gymnastics. And on the surface of course he can do all those things. The reality is they are a little bit harder for him, sometimes despite his determination he can’t participate. But we give it a go!

And despite his strength and willing, his body doesn’t always want to work properly. He gets tired and is just a bit less able than his peers. And when you see this it is heartbreaking. This is the reality of cancer!

Other Side Effects

And there are other side effects, Bilbo keeps getting a rash on his face. It is a little bit like acne. We have some Lush dream cream which helps but he doesn’t like me putting it on him. So unless it gets worse we’re just living with it.

From time to time Bilbo gets a weird pink eye. He had it this time last year and weirdly he has it again. It doesn’t seem to bother him, I suspect he’s tired. Of course he insists it has nothing to do with being tired…

Temperature

Temperature checking has been a constant ever since Bilbo was diagnosed he’s needed his temperature monitored. In those early days I used to take it neurotically through the day. Since he doesn’t have the Hickman line anymore the risks are lower.

However throughout treatment Bilbo will always need to go straight to hospital if his temperature goes above 38c.

And luckily for us all this hasn’t happened often but now we don’t have the hickman line it is more challenging I wrote about our last experience of a hospital stay here: Day 452: Complacent. And whilst writing this blog we got admitted again and again it wasn’t a great experience all round.

8 More To Go

We are three rounds of maintenance down, with eight more to go. And as I remind Bilbo we have a lumbar puncture in every season of the year, the seasons are coming and going in a flash. We know we have a long way to go but actually we’ve already come so far and we must hold on to that.

Mature Beyond His Years

I know i’m not painting a very rosy picture and i’m not going to lie maintenance isn’t a barrel of laughs. BUT it isn’t all bad, most days are pretty dull and uneventful – just the way we like it. And despite the constant worry, Bilbo continues to flourish.

And he is mature beyond his years. He can tell you what medicine he needs to take and is often the one telling us, you got this wrong…

Even with the liquid anti sickness he happily takes the syringe now and administers it himself.

I often stop myself and look on in awe at how he just “deals with it” this life IS his normal. He IS resilient. He takes it all in his stride, never complains. He’s worked incredibly hard at school to catch up with his peers. Our heart sings when he says “I just want to make you proud”

Bilbo you make us proud every single friggin day.