If there’s one thing you learn quickly after an ALL diagnosis, it’s this: no two days are the same.
One minute, you’re writing out a structured plan for the week, feeling like an absolute time-management guru. The next minute? BOOM.
👀 Community nurse arrives to give Sammy his chemo.
🦁 Roaring like a lion to get the wigglies (Hickman line) working.
💉 Nothing. Still blocked.
🏥 Get in the car. Hospital trip incoming.
🗑️ Checklist? Straight in the bin.
Today was one of those days.
I was literally sorting out a weekly checklist to bring some structure to our family life when I heard roaring from Sammy’s room. Don’t panic—it’s a trick we’ve learned to get the wigglies (Hickman line) working. But today? They weren’t playing ball.
So, before we even had a chance to tick anything off the list, we were straight in the car, heading to the hospital. This is why planning is so important—even when it all goes out the window.
🏉 Planning vs. Reality: Why You Still Need a Game Plan
I know what you’re thinking—
“If things change so often, what’s the point in planning?”
Let me tell you—planning is still a must.
Think of it like rugby:
- You don’t go into a game without a strategy just because the opposition might change their tactics.
- You don’t stop training because there’s a chance of bad weather.
- And you don’t ditch the game plan completely just because you have to adapt during play.
Same applies here. A solid plan gives you structure. Yes, things will change. But when they do, you know where you left off and where to jump back in.
🏥 The ALL “Grab Bag” Checklist
When change hits, it hits fast. That’s why you need a hospital grab bag ready at all times. Trust me, it’ll save you from scrambling at the last minute.
Here’s what we keep in ours:
✔️ Wash Kit & Spare Clothes – You never know how long you’ll be at the hospital. Plus, with chemo, vomiting happens, so it’s always best to be prepared.
✔️ Medical Pack for Wigglies (Hickman Line) – You’ll be trained on how to clean and manage the line, so have a small pack with everything needed to fix or clean it in an emergency. (I’ll do a full post on this soon!)
✔️ Entertainment – iPad, book, quizzes, anything to pass the time. There’s a LOT of waiting around.
✔️ Water, Water & More Water – We were advised to aim for at least 2L a day to flush out chemo. A big litre bottle helps track intake.
✔️ Sickness Tablets & Morphine – NO paracetamol or ibuprofen! They mask infections, and spotting infections early is critical.
✔️ Folder with ALL Medical Paperwork – This keeps everything in one place, from test results to medication schedules.
✔️ Medication Organiser – A dedicated box for chemo and other meds makes things so much easier to manage.
There are probably more things we’ll add over time, and I’ll update as we fine-tune it. If you’ve got any must-haves, drop them in the comments!
🍽️ The Spoons Theory: Managing Energy Levels
Now, let’s talk about energy management. My sister explained this to me the other day, and I think it’s a great way to help Sammy (and other kids) understand their limits.
It’s called The Spoon Theory. 🥄
Basically, everyone starts the day with a set number of spoons (could’ve been candles, chocolate bars, whatever, but apparently, we’re stuck with spoons).
A healthy adult might have 50 spoons a day.
Someone with MS or a chronic illness might only have 10 spoons.
A child with ALL? Maybe 15 spoons to start with.
Every activity costs spoons:
- Getting dressed? That’s a spoon.
- Walking to the hospital? That’s two spoons.
- Having a meltdown because the wigglies aren’t working? That’s at least 4 spoons gone.
When you’re out of spoons, you’re done—time to rest and recharge.
So, why does this matter for planning? Because if you don’t plan around your child’s spoons, you’ll end up with a half-finished checklist and an exhausted, frustrated kid.
💡 Key tip: Start slow. Adjust based on how many spoons they have each day. If things change suddenly, accept that the back end of the checklist might not get done.
For example, today, Sammy used way more spoons than expected because of the extra walking and stress at the hospital. By the time we got home, he was exhausted. One of our checklist items was reading to his sister before bed—but he had no spoons left.
No big deal. We adjust, reset, and try again tomorrow.
📋 Creating a Family Checklist That Works
In our house, everyone has a checklist—yes, even me.
Having this structure helps massively because:
✔️ No one forgets anything.
✔️ We know where we left off if things change.
✔️ It avoids arguments over “who’s doing what and when.”
For the kids, we’ve even added a reward system—if all their checklist items are done, they get 30 extra minutes of reading before bed. (This works for now… might need to upgrade to PlayStation time when they get older. 🤣)
I’ll be adding a downloadable version of our checklist, so other families can use it and tweak it for their own needs.
🏉 Final Thoughts: Plan, But Plan Wisely
ALL is unpredictable. One minute, things are running smoothly—the next, you’re rushing to hospital.
But having a plan in place doesn’t mean you’re expecting things to go perfectly. It just gives you structure so that when things do go sideways, you can pick up where you left off.
💡 Write your plan down.
💡 Make it accessible for the whole family.
💡 Accept that some days, it won’t go to plan—and that’s okay.
And remember—always count your spoons. 😉
#SlamminSamB #ALLAwareness #TimeManagement #SpoonTheory #RugbyVsCancer #StayStrong #WarriorMode
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