Day 234: Gratitude

This afternoon Bilbo competed with his class at his schools sports day. I felt an enormous sense of gratitude to just be there, on that field watching our son smile, laugh and run around with his friends.

Gratitude

I’m grateful because 234 days ago something so normal felt so far away. I have gratitude to be able to enjoy something so ordinary.

I have gratitude because he was awesome. He tried everything, he gave every activity on the circuit his all and he did it all with a smile on his face.

And this is the boy who has had chemo every single day this week. But this is Bilbo he’s not going to let something like chemo get in the way of living his life.

And finally I show gratitude that we’ve been able to make important memories.

How’s Bilbo doing?

I hope i’m not jinxing it but Bilbo is doing really well. He’s full of life, full of energy and has had us in stitches with his jokes, his funny ways and his cheekiness.

He’s been so brave and we’re incredibly proud of him.

On Monday we started the final four weeks of delayed intensification. We have been nervous about this week because we’ve been through this cocktail of drugs twice before.

We know that the chemo makes him feel nauseous and messes with his taste buds.

Delayed Intensification (DI)

Part one of DI finished on the 7th June Goodbye Steroids. And we had a full week to get his blood count up.

On Monday we kicked off part two. We had a long day in Oxford as the cyclophosphamide is given with a lot of fluids and is administered over 5hrs. Once that was complete Bilbo was in line for the list.

The List: happens on Mondays and Wednesdays. It is when the children have their lumbar punctures and bone marrow aspirates. These are done under general anesthetic. And the children have to be nil by mouth.

On Monday Bilbo was nil by mouth from 7am and didn’t go under until about 4pm. He didn’t complain once.

He told me he was going to close his eyes if he was feeling scared. But when we went in, he didn’t seem a bit scared. It just goes to show how irrational the steroids can make them.

We were sent home with the rest of his chemo for the week and meds. These included the 6MP chemo which is something Bilbo will be taking daily once we get into maintenance. And eight doses of cytarabine which is administered by the nurses Tuesday through Friday this week and again next week.

Sickness

This cocktail of drugs does make Bilbo feel sick. And it is a delicate balancing act trying to make sure we give him just the right amount of anti sickness so he doesn’t feel nauseous. We are also trying to help control the effect the chemo has on his tastes and smell.

When we’ve been through this before it was miserable. Over Christmas Bilbo barely ate a thing and he lost 14lbs.

On Tuesday he woke up feeling sick and wasn’t great after school. We decided to up his dose. We now also wake him up before we go to bed to give him an extra dose.

So far this is paying off and I really hope we can keep it this way.

What next?

On Monday we will be back in Oxford for the list to have a lumbar puncture for his methotrexate chemo. Then the cytarabine through the week.

The cytarabine is pushed through Bilbo’s wiggle and the nurses can do this at our house. They come in the morning and once they’re done Bilbo heads into school.

The last two weeks will only consist of Wednesday appointments at Milton Keynes hospital firstly for his peg injection with vincristine and then his last vincristine.

I’m dreading the peg injection as it is never very pleasant but I CAN NOT WAIT for the last vincristine.

Maintenance

And just like that we will be into maintenance. We may have to let Bilbo’s blood count recover before we can start, but once we do our new 12 weekly rhythm will become our new normal.

Daily oral chemo, weekly oral chemo and a lumbar puncture on the 3rd week. This cycle will repeat every 12 weeks until 18th March 2023.

Decisions Decisions

And as we get closer to maintenance we are once again having to think through making some big decisions.

Bilbo won’t need to have his hickman line (wiggle) through maintenance. But he will still need to have general anesthetics, potential hospital stays if he gets an infection/bug/flu and may need blood product.

This leaves us with making a decision about whether we ditch the line for a port or we go with nothing.

Having nothing would be ideal as it greatly reduces the risks of infection for Bilbo. BUT i’m utterly terrified that if we remove it and we end up in and out of hospital the thoughts of having to do bloods using prick tests and cannulas feels me with dread.

In the early days of treatment before we got the line our experience was horrific. I’m still scarred by his screams and I just don’t think we can risk the anxiety this caused Bilbo.

But we must also remember he’s almost a year older. He’s shown bravery I could never have imagined so ultimately we will work with Bilbo to make the right decision for him.

We have a few weeks to mull it over before we need to decide. But what the port or no port will mean is an end to taping sandwich bags to his body when he showers and a return to swimming!

How am I doing?

I’ve been back at work for the last two weeks and it has felt great.

I had a wonderful weekend spending time with my childhood best friends watching the Spice Girls on Saturday night at Wembley.

And i’m feeling a million times better than I did a few weeks ago.

My mood and my anxiety has lifted as I’ve seen Bilbo return to his normal self. And i’m focusing on the busy few weeks we have ahead.

We can’t wait to see our wonderful friends from Australia and if the British summer can stay dry for a weekend we’ll be dusting off our tent for some camping.

And focusing on gratitude has also helped. It is important that we are focused on the positives. On the things we are able to do, the memories we are able to make.

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