Apparently, Maya Was an Inconvenience to the Night Shift
- dellanienash9
- Mar 2
- 6 min read
Friday 27th February – A Very Long Day!
So Friday was one of THOSE days!
10:30 Paraceramol and Antihistamine
10:30-11:30 Physiotherapy (Tilt Table standing up)
11:30 Maya had her Ruxolitinib infusion, and honestly, it pretty much took up the whole day — about five hours or so in total, including flushing the line that kept occluding.
The Team started carefully. She had paracetamol and an antihistamine first, just to reduce the chance of any reaction. Then the infusion started really slowly. Every half an hour they increased the rate — from about 12.5 mls, then 25, then 37.5, and so on. It’s all very gradual and very monitored. Then half hourly is obs: BP, oxygen sats, heart rate, temperature, looking for signs for any reactions on Maya.
Which basically means… a lot of sitting around! A lot of watching the pump. A lot of waiting. Terry (Maya’s Dad) arrived from Kent to visit for the weekend but Friday Ruxolitinib infusion meant we were stuck in cubicle 9 Lion Ward.
The Port Saga 🙈
On top of that, Maya needed her port flushed. Meant to be done once a month.
If you’ve never seen that done, it’s not just a quick “in and out” thing. First you have to put numbing cream on and wait for it to work. Then they access the port, flush it, and remove the needle again.
We had a little plan.
The idea was:
Finish the Ruxolitinib infusion.
Put the numbing cream on.
Pop out to the Brunswick Centre for a bit of fresh air, and a bubble tea.
Grab a few groceries.
Come back, flush the port, and start her blood transfusion.
Because yes… her haemoglobin had dropped from 71 to 67, so Maya needed blood.
It would’ve been a nice little reset for her. Just half an hour of normal life outside hospital walls.
But… it didn’t quite go like that. Well, we did pop out for half-hour. Fresh air and bubble tea!
Back to the Lion Ward around 7:15pm, It turned out that Maya’s day nurse applied the numbing cream on the wrong place.
It was put where her old Hickman line used to be — on the scar — not where her port actually is now (just under her armpit). So by the time we realised, we had to start again. New cream. More waiting.
One of those moments where you just have to be patient and breathe.
The “Let’s Do It Tomorrow” Conversation 😬
Then as we got to around 7:30pm, we were told that the night shift was going to be “chemo-heavy” and Nught Nurse-In-Charge requested could Maya maybe have her blood transfusion on Saturday instead.
It was around 7:40pm at this point.
And I just thought… no. N-O.
No.
I said it politely. I wasn’t rude. I understand wards are busy. I understand staffing pressures. I really do.
But we had been there all day. Maya’s dad had come to spend time with her. She was clinically well. And I didn’t see why we should lose another whole day in hospital for something that could start there and then. Blood transfusions could take as long as 3-4 hours including flushing the line, taking into account “occlusion” of line (which sort of delays the transfusion) and some obs in between and after.
Surely the day nurse could begin the transfusion, do the 15-minute observations once it’s running, and then hand over to the night nurse to finish it?
That felt reasonable to me.
What Child Advocacy Actually Looks Like 🎗️
People sometimes think advocacy is dramatic. Well it really isn’t. It could be polite but persistent. Advocacy is me saying, “I know you’re busy… but this is what works best for my child.
I understand that you would like the “chemo-heavy” Lion ward at the start of the night shift to go smoothly…. but at the expense of foregoing Maya’s blood transfusion until the next day? So you would like it to be convenient for Ward nurses at Maya’s inconvenience? Maya has had hundreds of blood transfusions - so it doesn’t take any more special-skilled nurse and a “special time” to do it.
Because Maya doesn’t have the voice or the energy to negotiate these things herself. You see, if we left it until Saturday, that’s another day stuck waiting around for a blood transfusion that could’ve been done Friday evening/night as blood has already been prescribed and ready at the blood bank. I am more than happy to collect it myself from the blood bank, rather than wait for the busy porters or busy nurse to collect it. Whereas if it’s done that Friday night, we would be free Saturday! We can just have Maya’s port flushed anytime on Saturday (it’s done once a month). Daddy Terry, Maya and I can get time together on Saturday! I can give Maya her one tablet at midday (prophylactic Aciclovir) and we get a bit of normal weekend day.
So yeah, when your child has cancer, you protect those tiny bits of normal life FIERCELY. Sometimes that means having uncomfortable conversations. Sometimes it means pushing back — kindly. And calmly explaining to make them understand your situation. Your context. And to implore EMPATHY. At the end of their 12-hour shift, ward staff gets to go home.
We don’t. We are stuck in the hospital at most times. So when we get any opportunity to get out, we grab it. It’s for Maya’s social well being. And mine too.
And it always means putting Maya first.
That’s what Friday 27th February looked like.
Saturday 28th February – Stealing Back a Little Bit of Childhood for Maya
Saturday 28th February meant one thing…
We were OUT of the ward from 9:30AM. Daddy Terry, Maya and I. No beeping IV pumps. No obs machine every half hour. Just the three of us outside the hospital. There is a world out there outside the hospital walls.
We headed to St Pancras Train Station first and did one of Maya’s favourite things — people watching hurrying with their suitcases to find their platforms, and watch random people play the piano. There’s something about sitting there, watching the world rush by, that makes you feel part of normal life again. Maya had one mission though. 🤭
“Hamley’s.”
So of course, we went to the Hamley’s Toy Shop at St Pancras…
…which, if you’ve been, you’ll know is tiny. Way too small for a proper Maya-level toy adventure. Maya gave it a quick scan and basically decided, “Nope. This won’t do.” 😂
Before round two of toy heaven, Maya had another request:
“Pizza Express.”
High-dose steroids (20mg twice a day) have one upside — they give her an appetite. And when your child actually wants to eat, you don’t question it.
So we walked along Euston Road and went to Pizza Express. And she ate. Properly ate. Watching her enjoy food without nausea, without pushing it around the plate, without me coaxing every bite… that felt like a win.
Then we did it properly.
We went to the big Hamley’s (is it along Regent Street near Oxford Street)?
And honestly? It was like she’d entered toy heaven!
Maya was absolutely pampered by the lovely ladies on the second floor — funky nail varnish (dries in 2 minutes!) and glitter tattoos applied with such care and kindness. No awkwardness. No staring. Just warmth. Maya was made to feel like a princess!
She chose to buy Baby Dolly Ellie + Friends Doctor Set (errrr, we dare not say no to that shopping spree!), and for that afternoon, Maya wasn’t a child who knows too much about hospitals.
She was just a little girl in the biggest toy shop in the world. Smiling. Excited. Happy. And that’s what matters.
🩷 Because This Is What We’re Fighting For 💜
We fight for blood transfusions at 7:30pm Friday night (handover is 7:45pm). We negotiate with wards.
We push “day out” when Maya is clinically well during the WEEKEND when there are no physio (PT), OT, hospital school, speech and language and Play Team that ties us up inside the hospital.
So we can have days like this.
Days where she’s not a bed number in a very busy “chemo-heavy” ward. Not a schedule inconvenience. Just Maya.
Lessons for this weekend:
Find the moments of joy — even if you have to fight for them. Steal back the time whenever you can. Normal childhood shouldn’t be a luxury. We will keep carving out happiness between hospital days. Just for Maya. 🫶 Because Maya deserves more than survival.
MAYA deserves childhood.
If you feel you would like to sponsor a “day out” for Maya, please kindly send PayPal gift to
Or
Santander bank transfer
Sort code 09-01-36
Bank account 49579984
Reference: Maya’s Journey
We are always grateful, and even if you can’t donate, please share Maya’s far and wide. You just never know where Maya’s story will land!
T-H-A-N-K-❤️-Y-O-U
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