How to make fries

Day 2 of radiation done and dusted. As I sit back with a glass of wine and contemplate the day’s ‘adventures’, there are a few lessons I have learned.

After a morning so fraught with emotion, I felt as if I’d been sobbing for hours. No tears from me, but so many emotional outbursts and declarations of “this is the worst day ever!” from my little V, they just suck the energy out right out of you. With a little prodding, Miss V so succinctly explains that she’s feeling “very emotional with all the changes that have been happening lately” (ie. Daddy returning to work part-time). I’m so proud that she’s so in touch with her feelings (and wondering if she’s been reading my diary). After a heart-felt ‘d and m’, she is restored to her happy-bouncy self and the World is a better place. Today’s “not so bad after all” and I’m patting myself on the back for the crisis averted… Lesson no. 1: Don’t celebrate prematurely.

After an uneventful radiation session, Miss V announces she feels like Maccas chips. “Sure” I reply, thinking that in all likelihood the thought of them will make her want to throw up by time we get there. Surprisingly we make it to McDonalds and she’s still keen so I go through the drive through. I’m fully prepared to buy chips of which only one bite is likely to be taken before they are discarded. This is what it’s come down to. The price of chemo.  Only I am pleasantly surprised.  As Violet continues to munch away on the fries in the back of the car, I’m getting excited about this new breakthrough. Inside, I’m celebrating. I’m thinking about the photo I should take to send to Daddy. What should the caption be? Should I post it to Facebook?  Meanwhile, Violet is going through the process of how to make hot chips. She gets to chopping up the potatoes and adding the ‘sugar’ and I explain the rest.

So then we are driving along happily to Violet’s playlist with The Sound of Music’s “do, rei, me” cranking. I’m thinking about how awesomely the day has ended up: emotional crisis averted (no longer the “worst day ever”), successful radiation, chips being consumed and then it happens… Doh rei me, we are now being educated about how maccas chips are digested (not all that quickly may I add!). It’s only vomit, I assure myself (after all this is a very common occurrence at this stage of our lives). I pull over as soon as safely possible, but it’s too late. Her nasogastric tube has already left the building. (If you don’t know, Violet’s NG tube is literally her lifeline. All her meds and the majority of her nutrition are administered through this little yellow tube.) What’s done is done. It’s nearly time for school to end so I drive to school to pick up the other kids before heading back to the hospital for a new one. The whole time, my emotionally fraught child cries about how it’s “all her fault” and that she “told me” it was the “worst day ever.”  I spend the remainder of the trip building her up and convincing her that it’s not that bad and by the time we get to school she is resigned to the fact we’re returning to hospital (to stick a tube down her throat and into her stomach while she is fully conscious) and she’s OK with it. Lesson no. 2: leather car seats are ‘da bomb’ when cleaning up vomit. Fully recommend them. No lingering smell.

“It’s all ok”, I tell myself as we drive into to the Emergency Department (because the oncology unit is too overloaded today to deal with us). Craig is there waiting at ED after being at work all day. After MUCH convincing about how easy and painless it will be inserting a new NG tube (28 days after the last time), we are finally given the green light (from the nose owner) to proceed. This attempt results in a tube in the lung (target is most definitely the stomach) and a bleeding throat. Goodbye tube… again. By this stage I’m thinking of beginning a new career as a Negotiator. The second attempt, after the use of some numbing spray, is successful (why oh why have we never been given this before!???). However, the wire they use inside the tube to insert it, does not budge (like, it is seriously stuck!!). Now I am not normally one to tell God what to do, but by this stage I was TELLING God that we were not removing this tube again so he was going to have to get that wire sorted out. I can see the panic in the student doctor’s eyes and hear the desperation in the nurse’s voice.  Not sure if she’s a praying person, but I’m pretty sure she’s praying by this point. This is about as close to torturing a child as I’ve seen yet and I think she would have run for the hills before attempting it again. “Just breathe” I tell everyone in the room (more to bide some more time before she yanks that tube out again). Thankfully, Craig is having the same thoughts. There was NO WAY that tube was coming out again. He steps in and says “give me a go.” Praise God, to the Nurse’s surprise, he got that wire out!

So we finally get home and as I’m cradling my glass of wine, Craig asks me “so how was your day?”

“Well,” I say. “That was about the worst day ever…”

 

#hismerciesareneweverymorning
#tomorrowisanewday
#canlaughaboutitnow

Advertisements

The Last 6+ Weeks

There’s no doubt the last month or so has been the hardest yet. It’s been like one of the ‘normal’ 3 week cycles of chemo, but stretched over a 2+ month time span; much patience has been required to get some sort of normality back.

The bone marrow transplant/high dose chemo hospital stay was difficult, being in isolation, washing clothes at 70 degrees, wiping everything with alcohol wipes before entering the room, washing hands 1000’s of times and keeping Violet entertained was tiring.
Since we’ve been home I’ve told a few people that it’s like having a newborn baby…

  • Up at nights dealing with nappies, bad dreams
  • Catching vomit
  • Not catching vomit and doing extra washing
  • Feeding
  • Being vomited and pood on
  • Sore backs from carrying
  • Packing a day bag and plan ahead to go out

It’s like that, but different…

  • Changing nappies was more difficult. The liquid ‘poo’ is more disgusting. Her skin is so sensitive that baby wipes can’t be used, lots of barrier (and scar healing) cream to help the healing
  • I remember a few occasions with our babies we just got in the shower with them to wash them off, there’s a few times it would have been good to do this with Violet, however this is not possible with a central line (unless you want to spend the next hour changing dressings)
  • We can’t just ‘go out’ to get a break, as Violet is immune compromised, we need to avoid public places and places that smell
  • Sensitive, discoloured and peeling skin
  • Sleeping on her floor to catch vomit and medicate through the night
  • Her sense of taste took a very long time to get back and still isn’t 100%, the majority of the time she’s only on feeds via her NG tube. This video gives a pretty good indication of what it’s like trying to find something she’ll actually eat, Colleen calls it “The Not Very Hungry Caterpillar”

The biggest challenge is constantly juggling feeds, medications and smells. Those three things are continually in the back of our mind to keep Violet comfortable …

  • Feed – We need to feed her enough to maintain weight. If we go out, how to we catch up on a feed. If we push bolus’s too fast she’ll vomit.
  • Medication – we need to keep antiemetics regular to reduce nausea. Other meds (antibacterial, anti-viral, anti-fungal, liver protection …), if we push them too fast or when she’s nauseous then they come back up
  • Smell – Her sense of smell increased more than its usual sensitive self, so most dinner times she has run to her bedroom to avoid being nauseous and vomiting. We’ve tried cooking outside, but no all day slow cooker meal.

As a person who likes to problem solve and have order, routine, organisation the juggle has been difficult; the human body isn’t ordered, routined and organised, you drop one of the balls every now and again and it takes time to pick it up again.
It doesn’t sound like much, but after feeling fatigued from 6 months of other treatments, normal school routines, weekly hospital visits, thoughts about returning to work looming it has really warn us down. I’d say Violet is now 90% back to normal as we head into the next ‘adventure’ tomorrow, radiotherapy.

A Bilby Wedding

A Bilby Wedding

After a short ‘no visual contact’ engagement, Billy and Bilbina got married on Sunday 15 May 2016.

Backstory

Bilbies became Violets’ favourite animal after an excursion last year to learn about their endangered status. Shortly after, one of Mum’s friends knit Violet a Bilby, it was named “Bilbina”. Bilbina is slept with most nights, has been with Violet on every hospital visit and is a much loved toy. Bilbina is regularly called a rat or a possum by doctors who can’t see the distinctive tail; on one occasion she was called a Siberian hamster (by a Fawlty Towers loving doctor).

The Engagement

Violet required to be in isolation for her BMT hospital stay. Anything taken into isolation either needs to be wiped down with alcohol wipes or washed at 70 degrees. If anything touches the floor it needs to be wiped or washed again. A day without Bilbina would be very difficult, so Billy the backup Bilby was knit (thank you again Marling!). Billy was hot washed and separated from Bilbina to reduce the risk of two Bilbies on the floor. Note: Stuffed Bilbies do not wash well at 70 degrees, it was unlikely either Bilby would last a 2nd hot wash. It took a week before Bilbina jumped from the bed during her sleep, so Violet met Billy and Billy was tied to the ceiling so he wouldn’t touch the floor. During her BMT stay Violet informed us that Billy and Bilbina were engaged and would be married when she returned home, planning the wedding became a great way to keep Violet occupied and a great discussion point for nurses and visitors.

The Wedding

At 1:30pm on Sunday 15 May 2016 William(Billy) Sydney Bocks and Billbina Matilda Box tied the knot in the front garden of the Box home. Video and photos can be found by following the link.

Photos

Married Life

At 2:30pm on Sunday 15 May 2016 Billy and Billbina announced they were having a baby!
At 3pm on Sunday 15 May 2016 Billy and Billbina announced the arrival of their first daughter, Matilda Box.
Billy and Billbina have continued to live a happy life together and have enjoyed being cuddled regularly and having an odd bit of vomit on them.