Remember

Toby

5 Weeks Ago

• Remember to set alarm for 5:15am for Katelyn, 6:30am for Toby.

• Try to get some more sleep after Katelyn leaves for work at 5:30am.

• Get Luka up and start breakfast.

• Remember to check emails for anything urgent overnight while he eats.

• Don't forget a short black coffee for the hit of the day. Mmmmmm

• Chase Luka round trying to get him dressed for daycare. Remember his lunch & drink bottle.

• Walk to daycare, catch up with the teachers. High five Luka on the way-out.

• Get home, shower and be somewhat presentable for work. Does this shirt look okay?

• Jump into my emails and calendar for the day - don't forget to check in with Carina as to how our week is going.

• Staff meeting. How are we doing?

• Read latest market data, articles, reports.

• Three or four zoom meetings, eating lunch on the go, few more coffees, phone call, email, phone call, email.

• 4pm swings around. Pick up Luka from daycare. Yes! I got a hug, winning!

• Run the dogs around by the lake, teach Luka to throw the stick further.

• Remember to start tea, you can't eat takeaways every night.

• Clean up after Luka throws half his vegetables around the room.

• Phone call, email, chase Luka, email...shit where's Luka?!

• Remember to feed the dogs. Need to mow the lawns. Did I get the washing in? Need to do some groceries soon.

• Katelyns calling, overtime shift yes or no?

• Chase Luka round trying to put his pyjamas on. This guy is fast!

• Milk bottle, story, cuddle, bed time.

• Cross my fingers he goes to sleep first pop.

• 7.27pm ... three minutes to a meeting, get back into a shirt, make sure I have no food on me, where's the baby monitor, is he asleep okay? Crap its 7.29pm, run to office!

• Meet with my last client. Tidy up my emails for the day, clean up my office, go to the lounge - I can do some admin there.

• Chat to Katelyn between finishing emails.

• Netflix time.

• Check our payslips, pay some bills, check the sharemarket, catch up on some news, what's happening in Ukraine?

• Bed time, what's my calendar tomorrow?

• Remember to set alarm for 6:30am.

• Close eyes. I wonder why Luka is limping? Maybe book the doctor tomorrow.

Now

• 4:15am - Why is Luka crying? Check his temperature, all good...

• 5:05am - Why is Luka crying? Wriggling around a lot... might be sore.

• 5:40am - What is that beeping noise? Crap his feed pump has jammed.

• Luka's awake, stop his feed pump, disconnect him, flush 4mls of water down his line to clear the feed liquid so it doesn't clog. Bring him into bed with us.

• Join forces and wrestle Katelyn for a bit. Make sure his feed tube doesn't come out though.

• Give 3.4mls of Paracetamol down his feed tube. Flush it with 4mls of water.

• Give 1.2mls of Tramadol down his feed tube. Flush it with 4mls of water.

• Give 2.5mls of Lactulose down his feed tube to help with bowels. Flush it with 4mls of water.

• Give 3.5mls of Trimethorprim Amethoxazole antibiotic down his feed tube. Flush it with 4mls of water.

• Give 1.8mls of Anti-Nausea down his feed tube. Flush it with 4mls of water.

• Remember to do this again at 1pm, 8pm and 2am.

• Is there any point in breakfast, will he actually eat anything? Make a coffee for Katelyn and I. Don't forget her two scoops of milo or she will get grumpy.

• Change Luka's nappy, remember to wash my hands after to avoid the chemo acid burning.

• Give Luka his GCSH steroid injection in the arm, hold him tight Katelyn!

• Walk down to the hospital, pick up another coffee on the way. Crap did we bring our daily RAT tests with us?

• Keep Luka calm while the nurse takes another blood test.

• Chase Luka around the hospital room, avoiding every piece of equipment being played with then destroyed.

• Oncologist walks into the room...fuck what now? Oh just a check in...phew...slow your heart rate down Toby, take a breath.

• White blood cell count is 98.

• Red blood cell count is 81.

• Platelet count is 71. Crap...he will need a transfusion in a few days.

• Neutrophil count is 80. Need to get that up, keep giving the steroid injection for a few more days.

• Phone call from a client. "I'm off work with a family issue, can you please ring Carina?"

• Oncologist wants to book Luka in to harvest his stem cells. What does that involve...shit really?

• Wow what's the smell, when was the last time I had a shower?

• Geez its been three hours here already and it was just a check up. Let's go find some food.

• Back to Ronald McDonald house. Someone sent a gift package, we're all smiling, especially Luka.

• Shit, 12 emails sitting in my inbox, don't worry they will get looked after, thank god for help from work.

• Deal with Luka's emotions after his steroid injection...tantrum!

• Cuddle Luka after his tantrum. Poor dude.

• Talk with Katelyn while Luka has a sleep, how are we doing? Laugh about his constant talking and dancing. Cry about the side effect the Oncologist mentioned. Have a big sigh. Try to laugh again.

• Take Luka for a walk around Hagley Park and watch him run around after the ducks.

• Make a fourth coffee for the day.

• Take Luka to the playground downstairs so Katelyn can have a break.

• Spit out the cold coffee, make another.

• Whose making tea tonight at Ronald McDonald, it smells amazing!? Rotary club, amazing!

• Get Luka ready for bed, do his drugs, hook up his new feed tube lines for the night, get him calm, attach him to the feed line.

• Check his temperature - 37.4 - need to keep an eye on that overnight.

• "Goodnight mate, you're doing so well, we love you".

• Finally a chance to talk. How are we doing? What's happening tomorrow? Chemo? Surgery? Grandma arriving! What time?

• Bed time. No need to set alarm, we have one.

• Close eyes. Run through every possible scenario and outcome. Remember to breath. Remember to stay positive.

• Remember its just different now, we're still living, Luka's still happy, things could be worse, we have support, we're doing well, we've got this.

Remember, one day at a time.