#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia, beads of courage, all about numbers
Bilbo's Journey

Day 142: It is all about the numbers

Today marks 142 days of cancer and this post is all about the numbers. Random cancer numbers…

As soon as we got our end of treatment date (18th March 2022) I put a new countdown on the homepage of godberstravel.com I am hoping the visual will help mark the progress we’re making…slowly.

For the record we have 1093 days until end of treatment. And this isn’t the only numbers i’ve been looking at.

Beads of Courage

#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia, beads of courage, all about numbers
At every stage of cancer treatment, children receive a new Bead of Courage. The beads join together to form (often long) physical representations of their recovery, keeping a record of every hospital trip and treatment on their courageous journey. The Beads of Courage help to decrease illness-related distress and increase positive coping strategies to support children and their families.

During the first week of diagnosis we started Bilbo’s beads of courage. He had zero interest in them and they’ve been in a box, out of sight out of mind. Curiosity got the better of me and I decided to go through the log book.

And when I collected the beads on Monday Bilbo showed some interest and then he asked to thread the beads on the string. And tonight he asked to sort them all out into colours.

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Whilst we waited for Bilbo’s general anesthetic we threaded his new beads.
#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia, all about the numbers
It is amazing how many beads we’ve collected in the last 142 days.

We’ve talked about what the colours represent, his favourite is the blue heart which represents his family supporting him on this journey.

I totally get why the beads are so important for children. They represent a big part of what they experience and are a very visual reminder of their courage.

Bilbo’s Numbers

In 142 days Bilbo has earned 215 beads:

  • 5 Bone Marrow Aspirate’s
  • 85 Chemo Treatments
  • 7 Clinic Visits
  • 22 Community Nurse Visits
  • 18 Dressing Changes
  • 1 Ambulance Ride
  • 1 Hair Loss
  • 2 IV Antibiotics
  • 6 overnight hospital stays
  • 2 isolation
  • 1 Line Placement
  • 1 Medication challenge
  • 55 Pokes/Blood Draws
  • 8 Blood/Platelet Transfusions
  • 1 Act of Courage

And as we sat and threaded them tonight it blows my mind.

How’s Bilbo doing?

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Bilbo is OK. I say just OK because after 3 days of hospital visits and chemo tonight he looked tired. This morning he was sick and I am reminded of just how crap chemo is.

We’ve enjoyed the chemo break, we’ve enjoyed the normality. And this week has been a stark reminder. Back to our new normal preparing the anti-sickness, driving back and forth to Oxford, Oxford parking. Preparing the bags with meds, spare clothes, the cars with sick bowls.

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Day 1 of Interim Maintenance – lumbar puncture in Oxford

And this morning Bilbo woke up feeling sick and well you guessed it he was. He perked up after his meds…and was on top form at MK hospital this afternoon for his chemo injection.

Sadly tonight he complained his chicken noodles didn’t taste good and our firm favourite marmite on toast was rejected. It is going to be long 8 weeks.

His energy seems to be up and down, so we’ll follow his lead and let him dictate what he can manage and when he needs to slow down, which probably means at some point we will have to enforce rest.

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Both boys enjoying the lighter nights this evening at the park with daddy.

What happens next?

Monday saw the start of interim maintenance, you can read more details about the phase here ALL Quick Links. Chemo for this week is complete, we will back in Oxford next Friday and then he has a week off before starting again.

This is a whole new experience for Bilbo, so once again we will play it by ear. We know the side effects might not be that pleasant so we are on the look out to hold his hand through it.

How are we doing?

After the enormity of getting the MRD results and the results of the trial. Knowing when our end of treatment is, having the protocols mapped out. I feel like a massive weight has been lifted.

#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia,
Thank you to the Catchside family for gifting us some bulbs back when Bilbo was diagnosed. We’re delighted to see them growing this week. The boys love checking their progress.

I spent some time with the child psychologist today, it was incredibly reassuring. Cancer is a burden on Bilbo, on Harrison on all of us. And we worry all the time what the long term impact might be on both the boys. Talking my concerns through helped a lot.

Bilbo has been very anxious about elements of his treatment. General anesthetic for the MRD was very traumatic 2 weeks ago, he coped a lot better on Monday. But today getting his chemo injection was once again very traumatic.

Another stark reminder that cancer is BS and Bilbo really is every kind of brave for how he deals with it all.

Thank You

Finally a huge thank you to Rachel for raising £345 for Bilbo by running 20 miles in the MK Festival of running. You’re crazy but we love you for it!!


All about CLIC Sargent

#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia, all about the numbers
Thank you for running or CLIC Sargent and raising £345 Rachel! XX

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