Day 285: Maintenance

Last week we started maintenance. I shared how we were feeling about it last week in my post The Wait Is Over.

And last Wednesday that is exactly what we did we started the fifth and final stage of Acute lymphoblastic leukaemia (ALL) treatment – maintenance.

What is maintenance?

Maintenance is the final stage of treatment and it involves taking regular doses of chemotherapy to prevent the leukaemia returning.

Each cycle of maintenance is 12 weeks long. In reality what this means for Bilbo is he will take a daily oral chemo, a weekly oral chemo and on the second week of each cycle he will have a lumbar puncture so they can put chemo in his spine.

Then rinse and repeat. We expect to complete around 11 cycles between now and March 2022.

What does maintenance mean for us?

The meeting with our consultant on Wednesday last week was quite overwhelming.

I hadn’t anticipated how much there was to consider or take onboard. I had kind of assumed it would be straightforward, here are the meds and we’d count off the weeks. He’d have his lumbar puncture and we’d book getting his wiggle out.

Of course cancer is never that straightforward. It never gives you a straight line. There are dosing charts we need to understand, Bilbo’s been sick a couple of times. And i’ve felt utterly overwhelmed.

I don’t know if it is the the longevity of the treatment sinking in or being back on daily treatment, it could be the worry of how he may or may not react. Whatever it is it has been tougher than I thought.

What does maintenance mean for Bilbo?

Last Wednesday we were given both of Bilbo’s chemo meds and the dosing charts. There are X4 different doses and the level we give him will be dependent on his blood counts. What we are hoping for is that Bilbo can tolerate 100% of the dose.

After his first week his blood was good and so we’ve continued at 100%. He will be tested again on Monday and we will wait to see if we continue at the same dose.

If his blood count goes down we will need to reduce his dose. And then work on getting it back up. We need to be able to tolerate 100% but it may take us the first or second cycle of maintenance to get there.

How’s Bilbo doing?

3 weeks without any medication has returned our little boy. He’s been full of energy, his hair is growing back, he’s cheeky, playful and loving life. It is a joy to see and fills us with happiness.

But on Wednesday night he was sick and again this morning he was sick too. And so we’re back in the weird limbo of never really knowing what is normal 5 year old sickness and what is cancer – or at least a symptom of chemo.

We’ve given Bilbo anti-sickness and we will discuss this with our consultant on Wednesday.

How am I doing?

I’m a rollercoaster. I’m treading a very delicate tightrope. And my feelings are topsy turvey because what I think should be a trigger tends to leave me feeling nothing. And when I think i’m fine – i’m overwhelmed with anxiety and dark thoughts.

On Wednesday evening after the hospital appointment I broke down. I did it in front of Bilbo – I couldn’t help it!

New Medicine

I was an emotional wreck after giving Bilbo his first dose of his new chemo. I’m not sure if it was the enormity of the milestone or the fact it was covered in toxic stickers. I was left wondering if the MK pharmacist is a bit sticker happy compared to Oxford as we’ve never had them on the 6MP before.

Oral MTX looks like wee so Bilbo and I had a chat about how he will need to have it weekly.

Bilbo: Does it taste bad?

Me: I have no idea as I’m not allowed to taste it

He got upset and there were tears and then he agreed to try it. He seemed pleasantly surprised and said with a smile it tasted like water!!

It is this attitude that breaks me, I have no idea how this kid is able to be so fucking brave, awesome and inspiring – he’s 5 years old and takes this cancer bullshit in his stride!

My tears streamed I just couldn’t help it! I held onto him and told him how proud I am and that I’m lucky to be his mummy. Most of the time he is braver than we could ever be.

Boston

And so on Monday I left for Boston. The lead up to the trip was fraught with anxiety. Was I doing the right thing? Would Bilbo be ok? How would Harrison be without me? What if something happened.

I was fine as it turns out, getting on the plane. But when I arrived and started to walk through security it hit me. My chest tightened, I couldn’t breath, my eyes felt hot, I felt sick. I messaged Rich for reassurance. I felt so far away from my boys.

Knowing the boys were OK – helped. And as the hours passed so did my anxiety.

Learning To Live With IT

I don’t know what IT is. IT makes me really tired, sad and lonely. IT is like a dark fog that sucks all the life out of me.

Sometimes IT hides and lets me put on a show, a fake smile and pretend everything is OK.

And in all honesty most of the time it is. But IT has a habit of creeping into my consciousness when I least expect it and when it takes hold IT is suffocating.

And so life continues to be a rollercoaster, in the last 14 days the positives have outweighed the negatives and I’m holding on to that with every ounce of my being.