Nineteen

In a few days Violet starts the 19th cycle of chemo in her relapse protocol.

The duration of relapse treatment is now similar to frontline treatment (circa 500 days).

Although frontline treatment was more intense with side effects and inpatient admissions, relapse is just as (if not more) emotionally tiring. Using a water analogy, frontline was like trying to cross a waist deep running stream and relapse is like chinese water torture. With frontline we’d slowly wade our way through, step by step, after a while we could see the other side, the goal, the end of treatment. With relapse we don’t know where the end is, just when we think it’s under control, BAM, new growth, different treatment, a different goal.

Through it all, one thing has remained. Our faith. I know at times it’s been stronger than others. Through the world of constant change, through the emotional roller coasters, God has been there. A friend told me they “respect our gritty faith”, which got me thinking, what did that mean, what is he seeing that I don’t as we take this journey day by day, hour by hour, breath by breath….

Praise and Worship

For me, praise and workshop is key. To shift or lift the atmosphere (which can get toxic/negative/depressing) we put on a hymn. Over time the playlist has changed, the current top 3 are…

.. you may notice a theme, at the moment we feel a little beaten up. To be starting the 19th cycle of what was planned to be “up to 17 cycles”, recently discover additional growth and know treatment will once again change is frustrating. Praise and worship help shift those feelings. A few Sundays ago I was in Church, tears rolling down my face, hands raised, trying to sing Raise a Hallelujah. It’s tough. We will get through this. He is there for us. It’s a season, we’re still holding on, standing firm. Gritty faith.

Prayer

When you’re emotionally drained/broken. This quote is so true…

My mind is like my web browser. 19 tabs are open, 3 are frozen and I have no idea where the music is coming from.

.. as such, simple prayer, allows us to not ramble but also have depth behind it. We weave these simple prayers into our day.

The Bible

I’ve listed some verses before.
The app is pinned to my home screen.
The book is filled with encouragement and amazing struggles and triumphs.
Simple small routines make things easy. It’s one certainty I can control and take anywhere. I start the day with verse of the day alert and most nights I read a small devotional as part of my wind down bed routine.

Fellowship

Church is hard, the kids don’t enjoy it for varying reasons. We don’t have the capacity to sort them out and help them be more engaged. It is a priority, it’s an effort to get there, but we attend when we can. I love the praise and worship, and encouragement from friends. Outside the four walls we stay connected, we have trusted friends and family we lean on, unload and gain wisdom from.

In Closing…

I guess that’s how I interpret “gritty faith”. I’ve partially written about this before, but this has been from a slightly different angle.

For me faith isn’t about evangelising and preaching from the rooftop it’s not a place I go, it’s about weaving God into my every day, consistently, living in the moment, taking it a step at a time, standing on the rock during the constant dripping and change of treatment, somewhere to turn when things don’t seem that great.

Yep, we could have thrown it all away, our main prayer of Violet being healed hasn’t been answered. Last time I raised a hallelujah for her hair, it all fell out again. I’d love this journey to be over/finished/done, but it’s not. But we have been blessed…

  • She’s alive.
  • Her cancer is not aggressively growing.
  • She hasn’t had major side effects or disabilities.
  • Treatment options are available to her.
  • We have a great health system and live in a city where treatment is available.
  • We’re coping (just).
  • Our house is a blessing, a sanctuary.
  • I have an amazingly understanding workplace.
  • We have great support from friends and family.
  • We are loved.
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Simple Prayer

There’s a couple of prayers I say each day. They are simple for a few reasons:
1) So I can remember them when I’m tired and my brain is fried
2) So they kids can remember them

They maybe simple, but there’s depth to them.

For grace:

Lord God I thank you for this awesome meal and pray you bless it to our bodies to make us Big, Strong, Happy and Healthy.

The first part is fine, is the reason we’re saying grace, thanking God for providing us a meal to enjoy.
The rest has a little more reasoning…
Big – a big person is humble, doesn’t try to “one up”
Strong – not physically, but emotionally
Happy – mentally content
Healthy – physically well

Every now and again I discuss with the kids what the prayer means so they have a deeper acceptance of it.

 

In recent months I’ve also had being laying hands on Violet and praying for four H’s:

Lord I pray Violet is Healed, her Hair grows back and we’re all Happy and Healthy

Healed – cancer/tumor completely gone, never to return.
Hair – Violet longs to have hair again, she’s had years without hair.
Happy – as above, that the family is content, mentally well
Health – Violet and the family is healthy, no matter what treatment is thrown her way

The most important personal trait

A trait that I highly rate is humility.

We live in a “look at me” and “look at what I have” society where I think humility is lost.

My take on the word is, someone who is humble, no matter what status you have, or where you are, you have time to listen stand up for and help others. The dictionary has a slightly different take on it..
humility

So, here’s the people who I respect for their humility…

Some guys I’ve spent many a night around a table or fire with, we’ve had lots of conversations, some deep, some not as much. You do amazing stuff, you’re not after an accolade, just to help out. Jon, Aaron, Rod, Phil, you guys are an inspiration. Ron, you’re new to this group, but WOW, your heart for the underprivileged and downtrodden is amazing.

My grandfather Cyril, is a man of not many words, but what he goes without to help his family is phenomenal. Words can’t express my respect for granddad. I know he passed this trait onto mum, who would never say she’s special; but she is!

‘It was no trouble at all’ is a common response from someone who has surprised us with a care package or meal many times. It’s also very rare to see her not talking to and helping another family at school, looking for nothing in return. Gretel, you are amazing!

I guy I met at work over 15 years ago, sky rocketed into management echelon in the US. A few months back, he was visiting the office, he took the time to come and have a chat about Violet; he was in awe of me! Really! Wow. He values what is important. Thank you Brad.

Have you ever listened to the words of True Blue? …“Is it standin’ by your mate when he’s in a fight” .. John Williamson is incredible, the number of causes he supports is phenomenal… he reminds me of my Dad, who can’t say no to getting involved and helping in the community. Dad you’re amazing.

Tor, you’re one amazing guy and your family is phenomenal! You’ve gone through so much and were in the middle of a storm, yet you called and offered help, you and Trudy visited and entertained us at your house. Wow. And I know where you get it from, Aunty Vic, there is no keeping you away, your visits and hugs meant a lot, to fit that in-between your how many grandkids, charitable endeavours, and other patients you visited, thank you!

A lot of the field engineers I work with truly underplay their skills.. I understand why. And a lot of the time you’re the smartest people in the room, but oh so very humble when you deliver a tough message.

There are others, I’ve probably forgotten for now, but I’ll try to update this as time goes on.

So, THANK YOU to the people in my life who I respect for their humility. Cheers!

I don’t know what to say

A couple of colleagues pulled me aside at different times over the last few weeks and said something similar to “I really feel for you, I’m sorry I haven’t said anything until now, but I didn’t know what to say”.

To tell you the truth, it wasn’t until recently that I thought about the way I would have reacted if the roles were reversed before Violet got cancer, and it would have been very similar.

I know I wouldn’t have known what to say.
I know I would have stared at a child with a bald head or tubes out their nose.
I guess I would have been in shock. Emotional overload, brain short circuit.

I’m sorry to those that I may have done this to in the past. Some things have no rule books and are just plain difficult to deal with.

So, if you feel you don’t know what to say.. here’s some things I think I’d now say:

  • I don’t know what to say, but I really feel for you.
  • I’m here for you if you need me
  • I’d like to do something for you, what would help (side note: different people have different needs)
  • Smile and wave to a kid with a bald head, they’re pretty much a normal, just look a bit different

Depending on what people are going through, there might not be the right thing to say… the things above might even offend… it’s tough!

In the early days there were things that people said that did rub me the wrong way, below I’ve got went through my head at the time:

  • What are her chances?
    • Really? I’m just coming to terms that my daughter has cancer, no I don’t want to be reminded all the time of her survival rate, I’d like to enjoy her for now.
  • My [insert relative/friend] has cancer, it’s been a really tough few years.
    • What? this will take years.
    • Really? can we just focus on my daughter for a moment before I hear your story.
    • Do you realise that every cancer is different and for a kid to get cancer is much rarer than your 80 year old aunt?
  • How are you really doing?
    • Ummm.. I don’t really know you .. “I’m ok/good” .. but to tell you you the truth I’m so emotionally tired that I don’t really know how I’m doing, and quite frankly aren’t ready to find out.
  • I know someone who’s child died of cancer, would you like me to introduce you?
    • Sorry for being selfish, but right now I don’t care. My daughter is still alive, can I just celebrate that fact and enjoy her before being faced with the reality of what others have faced.
    • Wow, this is real. My daughter could die…. Thanks for throwing that in my face – NOT!
    • It’s only been in recent months I’ve thought of all the kids who’ve come before Violet, who have trialed drugs and passed. I really feel for those parents, but in the early days, it was all about survival.

I forgive all of you for what you say, how were you to know what you said offended. Hopefully I was polite in my response.

 

Now people could say anything to me and I’m ok with it. I’m happy to talk in depth on pretty much any of Violets treatment (or future plans), that’s if I’ve got the time.

A couple of articles that friends have shared in recent months that I felt are too good not to share on this topic are:
Stop Saying “Everything Happens for a Reason”
And, a three part series on Stupid Phrases For People In Crisis. Part 1Part 2: Giving Grace To People In CrisisPart 3: A Final Note For Those In Crisis
I don’t necessarily agree with all, but they’re a pretty good read.

I see you friend…

I see you friend… Swimming with kids… My child has a central line, so showering or swimming is not possible.

I see you friend… On holidays… My holidays have been all used up, filled with sleepless nights caring for my child in hospital. My last holiday was before she was diagnosed, wondering what was wrong, dealing with her whinging.

I see you friend… On a road trip / flight hours away from home… My Child is only allowed to be within an hour of the hospital

I see you friend… Having fun in the sun… My child is in medication that makes her burn even in indirect sunlight

I see you friend… In your active ware doing exercise, yoga, palates … I’d love to have any time to myself to do that

I see you friend… Kicking goals at work.. I’m so tired I have trouble concentrating and focusing on stuff

I see you friend… Playing with your share portfolio and investment house… I cashed in my shares to take more leave and spend with my girl.

I see you friend… With your horrible life, you couldn’t get a seat on the train, your coffee order was wrong, your tire was flat … I laugh at your ‘problems’, harden up.

I see you friend… With your aromatic and slow cooked dinners.. My child runs from smells before she vomits, we’ve been lucky to have a handful of meals together as a family over the last year.

You see me friend… I doubt you’ll ever understand what it’s like. Yes, at times I get jealous of what you have and do. But I love you all the same. This is only temporary.

I see you friend… the silent one who doesn’t post, the one I may not know… I know your problems are bigger than mine, I feel for you, I’ll probably never understand what you’re going through

The (not so) hungry caterpillar

The (not so) hungry caterpillar

A little girl’s bald head reflects the light of the morning sun.

It’s Sunday morning. Her sleepy eyes open – pop!- under the warm blankets is a very skinny, scrawny (not so) hungry caterpillar.

She asks her Mum for some food. (This equates to yelling as if someone is attacking her to allow for the fastest possible reaction time).

Her mother asks what she wants to eat. “I don’t know” she replies. “Just food.”

On Monday she asks for a cheese and bacon balls. After making a special trip to the shops, she takes one look and says “I don’t want them anymore.”

On Tuesday she asks for a choc chip muffin. After spending an hour baking, muffins are delivered fresh and warm, she picks it up and says “I don’t feel like them anymore.”
Her mother eats it.

On Wednesday she asks for a lime milkshake. After walking every street and scouring every shop within a 3km radius and returning with the shake, she takes one sip and says “I’m done.” Her mother finishes it.

On Thursday she asks for strawberries. Strawberries are delivered, tastefully arranged on a plate. “No” says the (not so) hungry caterpillar “they need to be cut smaller”. The now somewhat smaller strawberries are once again served. She takes one nibble and says “these taste gross.”

On Friday she nibbles one piece of cheese, one jatz and glances at a bowl of 2 minute noodles.

On Saturday she eats 1/3 of an avocado sushi, nibbles a choc chip cookie, a corn chip and a licks a spoonful of ice-cream. Her mother eats the leftovers. That night the caterpillar has a bellyache. She vomits said sushi. (Apparently seaweed does not digest quickly).

The next day is Sunday again. The caterpillar vomits once more and feels much better.

Now the (not so) hungry caterpillar is feeling hungry again. (See paragraph 1)

Mother caterpillar, however, is not so hungry. She has built a small house – similar to a cocoon around her middle. (She is still waiting for the butterfly to appear).

Practice doesn’t always make perfect

Once again we can look back and ponder ‘another day in the life’ (that we’re thankful is over!).

We started the day with a cranky and rather apprehensive little girl. I drove her in to the hospital for her second day of testing. The whole way to the hospital Violet displayed multiple personalities, ranging from singing happy ballads to groaning to lashing out in anger. (She even complained about not having breakfast which was rather comical because breakfast for her only happens once in a blue moon). Despite leaving 30 mins earlier than usual, we arrived late and checked in for her 3 tests for the day (MIBG, MRI and CT scan).

These tests are not something new. This is her 4th round of these tests since diagnosis so you’d think she’d be an old hat. First up was the MIBG which looks for any ‘hot spots’ in her bones. This involves lying still between what I can only describe as a sandwich press. It gets right up in your face until you think it’s going to hit you and then stops and moves around your body (claustrophobic anyone?). This is while they have her feet taped together and have her wrapped so tightly in a sheet that you might as well call it a straight jacket. This goes for just over an hour each time (done twice, over 2 days). Today, while this is happening, I am pumping contrast fluid down her NG tube for her CT scan. This is great stuff. 450ml of fluid for her 6-yo bladder to deal with which makes her feel sick and gives her diarrhea… every time. (Just a little something to look forward to later). There is NO way to get this down her throat without the use of her NG tube, so to extend the merriment they give me 10ml syringes to administer it ’cause they can’t find any bigger ones.

By about syringe 25, she is sobbing, feeling sick, tired and emotional and I am trying to keep her still so we don’t have to restart the scan. Enter the nurse who informs me that they need to give her a cannula in her arm in order to give her the IV contrast for the CT as they can’t use her central line [insert long-winded explanation on why this torture is warranted]. Now you would think my brave little warrior would be used to needles by now. No. Don’t get me wrong, we have had times they have regularly inserted insuflons (valve inserted in the muscle in her thigh so we can administer growth hormones without turning her into a pin cushion) without so much as ice. But tell her you want to put a needle into a vein and she turns into the Tassie Devil on steroids. (My sincerest thanks to the trainee doctor in ED who ruined her for life after butchering her arm while trying to insert a cannula when she was first diagnosed. Before this, she was a dream).

So the scan finishes, Craig arrives and we spend the next 10 minutes in operation ‘Major Distraction’, stealthily pushing the remainder of her oral contrast down her tube. In between moments of distraction she yells as us to stop because she is feeling sick and her belly is full. Our favourite nurse now comes in with the numbing cream for the cannula insertion and we have to break the news of ‘impending doom’ to Violet. The nurse tells us how amazing she is at inserting cannulas and reassures Violet that she won’t feel a thing. We have to hold Violet down to put the cream on her arm.

They usher us off to a room to give a cream some time to work. We’re there for all of 5 mins and Violet announces she needs to be sick. Of course, they’ve put us in probably the only room in the hospital that doesn’t have sick bags. She vomits all over the floor. They then move us to a new room (minus the sea of vomit on the floor). Our very confident nurse is continually reassuring us of her excellent abilities. We finally calm down our anxious, sick and trembling child and the nurse tells her it will be over in 5 seconds and that she can give her a score between 0 and 10 when she’s done. Much negotiation and 15 seconds later, a haematoma the size of large marble protrudes from Violet’s skin – minus a cannula. Violet loudly scores her a ZERO (in her best Tassie devil voice). I would have given her points for her amazing acting job, as even though she was clearly freaked out at the size of the haematoma, she kept a her voice even while staunching the blood flow.

(Before you berate this nurse for this small but significant human error, I believe my nervous daughter just may have bent her elbow ever-so-slightly at just the wrong moment…)  Attempt no. 2 is a success, scoring our now shaken nurse a 100/10. I later sit down with the nurse and tell her that there are no hard feelings (after all we are but mere humans) and prescribed her a stiff drink at knock-off.

(Note: I have since spoken to the oncologist he has agreed we will not be inserting any more cannulas for CTs.)

Violet undergoes the next 2 scans without a hitch. Winning. Finally. I can smell freedom and my lunch. Next stop is Oncology outpatients for an unscheduled visit to confirm the time of Violet’s bone marrow aspirate (BMA) the next day. (BMA is where they knock the kid out and stick 2 big needles into their pelvis to sample their marrow then wake them up without any pain relief). Appointment confirmed. I question the nurse at the desk about one of Violet’s lumens (1 of 2 connections on the central line that go into Violet’s heart) that appeared to be blocked the previous day and had some residual blood in it. I am told this needs to be attended to today. Yay.

I am happy to say that the drama stopped there. With an expert ‘flush’ the nurse had the lines working perfectly. There was no need for extra drugs to clear the line. Of course the day couldn’t end there. We had holes in arms and spilled blood and many tears throughout the day so an incentive/prize/bribe/reward was required. Yes, Violet got one too.  🙂