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Bilbo's Journey

Day 245: The Countdown Is On

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Bilbo’s Harry Potter obsession has gone up a notch this week. He’s dreaming about Harry Potter, he’s watched one more movie and he’s begging for me to complete his blind bag set and his reward chart is 68 stickers away from him earning the Hogwarts Express.

The countdown is on we’re well and truly into delayed intensification (DI) there are just two weeks left. We’re so close to starting maintenance.

And at this point we only have two more sessions to go before DI is complete. We have a vincristine and peg on Wednesday and then Bilbo’s final vincristine next Wednesday.

And whilst the countdown is on we have also marked another milestone. There are less than 1000 days of treatment left – 990 to be exact.

How’s Bilbo Doing?

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Both boys enjoyed The Henry Allen Trust support group meet up. Although Bilbo did say he preferred to take in the scenery than play golf.
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Harrison enjoyed taking his shoes off an pretending to wrestle a crocodile. I think it is fair to say neither of my boys won!

The last 11 days have seen Bilbo go on quite the journey. When I last posted Day 234: Gratitude Bilbo was in good spirits he was doing really well. And I’m pleased to report he still is.

He’s had two weeks of daily chemo and we didn’t end up with much nausea or sickness. This was mostly because of the cocktail of anti-sickness he is having.

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Bilbo took it easy after picking this haul of strawberries
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I think Harrison enjoyed himself!
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Strawberries anyone?

Over the last few days Bilbo has been complaining of tired legs, which is unusual for him and his taste has gone. Tonight we’ve tried a variety of foods to see what might be suitable for his packed lunch tomorrow. We didn’t have much luck. A dry crumpet was all he managed despite him saying he was starving.

We know this will be short lived and we had predicted this would be the case based on his experience the last two times he had this cocktail. So we’ve got this.

To Port or Not to Port

Rich and I have been agonising over the port decision. We’ve spent evenings weighing up the pros and cons. We’ve had endless conversations online with other ALL parents and in person with consultants and nurses.

A week ago I was convinced the port was the right call. For Bilbo and for us. What i’ve come to realise is I think I was letting my own feelings blur my judgement.

As a parent we’ve both sat through some pretty horrific experiences for Bilbo. The insertion of cannulas, injections and failing cannulas. Rich and I have been heartbroken holding our little boy as he’s screamed in the treatment room before general anesthetics, peg injections, when he’s given blood and had cannulas placed in his arm.

I’ve shed tears when he’s told he us he doesn’t want to be poorly anymore.

These moments over the last 8 months have left their mark on us emotionally and psychologically.

And what i’ve come to realise is that i’m probably more scarred by these procedures in some ways than Bilbo. He’s moved on. He’s on to bigger and better things, he’s thinking about swimming and the splash park at Willen Lake. He’s planning the holiday we’re going to have with the overflowing bucket and pirate ship. When his hickman line is out.

Resilience

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Over the last few weeks we’ve been on another countdown, the boys have been caring for caterpillars 🐛. I’ve read the hungry caterpillar over and over that little dude makes it all seem so simple eat some cheese a few cakes get fat sleep in a cocoon emerge as a beautiful butterfly. 🦋 The reality is a lot less satisfying out of 5 caterpillars 4 made it to be a cocoon and sadly only 3 emerged as beautiful butterflies including this one with the imperfect wing. I love it’s imperfection but I worry about it’s survival rate.

Our little boy has surpassed our expectations with his bravery. In particular how he’s handling the whole process of making this decision. He’s shown me what it means to be resilient.

Recap:

  • Bilbo has a hickman line as he we come to the end of his front line treatment we need to decide what to do about how we manage maintenance.
  • He will only have daily and weekly oral chemo and a lumbar puncture every 12 weeks through maintenance until March 2022.
  • The lumbar puncture requires a general anesthetic. If Bilbo doesn’t have a line or port he will need to have a cannula before for them to administer the sleepy medicine OR they give him gas and put the cannula in whilst he sleeps.
  • Throughout maintenance Bilbo will still need to have blood tests. With no line or port they can do this through a finger prick.
  • If Bilbo has a port he can still swim and bath but he will still need to have it flushed monthly.
  • With a port he will still be high risk for infection and sepsis so any temp over 38 will require a fast transfer to hospital for IV antibiotics.
  • With no line or port if Bilbo gets sick he is more likely to be treated with oral antibiotics.

On Monday we talked to his consultant. She reminded me why she believes the best thing for Bilbo is to have no line or port. When I challenged this decision she shared that in her experience children are better about coping than we give them credit for. I wasn’t buying it.

We agreed that Bilbo would try finger prick tests over the coming weeks, we’d keep his hickman line in until his first LP in maintenance (week 2) and then re-evaluate.

One of the lovely nurses at Kamran Mel offered to show Bilbo what the finger prick entailed. She offered to have it on her finger. I insisted it was done on mine.

Part of this is because i’m convinced they aren’t pain free. I have them when I give blood and they definitely leave a dull ache for at least a day. I needed to be able to show Bilbo it was OK and be honest with him about how it felt.

It was painless they use a less deep needle or different brand, I was pleasantly surprised.

Bilbo was not impressed he got quite distressed and said he didn’t like the sight of the blood. This was my worry I thought this might happen.

Once we were home, Bilbo was quite clingy we cuddled whilst watching TV and the questions started. This is how Bilbo’s brain works. He likes to process it all. On his terms.

Before bed he announced “I think I will try the prick test mummy” I praised him and suggested we try it with his hand behind his back so he didn’t have to see the blood.

On Tuesday Jodie our community nurse came by to do his daily chemo. We chatted about the finger prick test, I explained he was happy to do it behind his back. He then announced “no mummy I can do it without that I don’t mind seeing it” I was blown away.

Finger Prick

On Thursday Vicky came to do his chemo and we decided to give it a go.

We gave Bilbo the choice of chemo or bloods first. We got the chemo done and then we were ready.

He sat on my lap finger out and he owned it. His breathing didn’t change he sat there and watched as Vicky pricked his finger and then proceeded to squeeze and wipe and squeeze and wipe into the vile. She repeated this action about 30 times in order to get the vile a third full of his blood.

Bilbo informed us it didn’t hurt. He wasn’t too impressed with how long it took but we know next time to have the iPad ready.

And just like that it was done. He did it! He was sooooooo incredibly brave.

Turning Point

After dropping him off at schoool, I phoned Rich and cried.

I think those hot tears were well overdue they were happy tears. I don’t ever want to forget that moment because it was so significant it felt like a turning point.

On the drive back home it was in that moment that I realised we have turned a corner. I no longer fear being in the car on my own because all I can do is cry.

I no longer want to torture myself with songs that evoke an emotional gut wrenching reaction.

I’m smiling more…things are looking a little clear, a little sharper and life is finally feeling more positive.

The Countdown Is On

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Feeding the chickens with Johnny. Thank you for the delicious eggs they were lovely.
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The boys enjoyed time with their cousins…

And so the countdown is still on. To the last DI chemo. Getting Bilbo’s port out, booking a holiday. The countdown is on to the 1 year diagnosis anniversary, the half way point, the point where will have completed more days than we have left of treatment. And of course the countdown is on to March 18th 2022.

We’re Going To The Zoo Tomorrow

But before we start counting anything down Bilbo and I are off to the zoo tomorrow. Bilbo has his FIRST EVER school trip and i’m accompanying the class.

Bilbo has told anyone and everyone who will listen that he is going on a coach with all his friends. We have a picnic ready that we think Bilbo will be able to eat, but i’m on standby incase we need to opt for something else.

I’m about to lay out his clothes so he can get dressed as soon as he is awake and he wants us to be at the school super early.

I can’t wait…I’m hoping tomorrow is another milestone we get to tick off for Bilbo to show that we’re making progress our countdown is on to being a normal family but until then we’ll give it a good go to be as close to normal as we can.

2 Comments on “Day 245: The Countdown Is On

  1. Your resilience and Bilbo’s bravery are both amazing and profound. So happy to read all this. I am out there again in August and hope to see you.

  2. So happy reading this Kim. I can sense a shift in your mood and it feels a lot more positive. He is truly incredible and you should be so so proud of him, but also of yourselves- you’re doing the most wonderful job of getting your boys through this long ordeal, they’re so lucky to have you xxx

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