She went to hospital with hair on her head.

Bony growth has stopped. Yay.
But disease has progressed in her marrow. No! Not again!!
She’s quite unwell. When do you want to start? Tomorrow?
Premeds. Long lasting antiemetics. Diuretics.
Drip, drip, drip. Hyper hydration. Weigh the output.
Familiar friendly faces, in a way we’re home again, but not where we want to be.
Ahh, that wasn’t as bad as it could be.

Checkup time, 39 degrees, needing packed cells and platelets. What? That’s not supposed to be.
A simple temperature and a little sniffle. Not so bad.
Neutrophils less than 0.01. Sigh.
Neutropenia and a temperature. Not so good.
Drip, drip, drip. IV hydration. Antibiotics.

Hours turn to days. Tired bleary eyes. Fractured thoughts. Fatigue.
Caffeine to see the day through.
Neutrophils 0.02. Sigh. Come on marrow.
A day, an hour at a time. It’s out of my hands. It’s in His!
Comforting. Hugging. Rewarding. Negotiating. Encouraging. To eat. To take meds. To do another procedure.
Persistent temperature continuing.

Sniffle, sniffle. “Can I have another tissue”.
Hair out in clumps. Hair in food. Hair in mouth. Annoying.
Drip, drip, drip. Another bag of platelets.
Frustrated. Annoyed. Shave it off!! Ahh, now it’s prickly.

Drop offs, pickups, groceries, washing, cooking, cleaning. Routine doesn’t stop.
Move that meeting, cover me for that. Sorry I need to just take time off. To focus, not to juggle. Extend my leave.
Ask for help. Get overwhelmed. Loved.
Neutrophils 0.06. Sigh. Not counting chickens. Come on marrow!!

Full name. Date of birth. Does she have any allergies?
Panadol. No. She has her own, it’s in her box, the strawberry flavoured stuff.
Crush that tablet. Swallow this one. Mix the capsule with Lemon yoghurt.
Drip, drip, drip. Another bag of packed cells.

Mango smoothie, yum. Three sips in. I’m full. Sigh. It was worth a try.
Pink milk for breaky, sure, whatever to keep the NG away.
OJ spilt again. Change the sheets.
Washed clean hands, dry cracked knuckles. Moisturise.

Day 10, temperatures stop, not counting chickens. Time to wait and see.
Marvel movies pass the time.
Craft and games with volunteers. Agrocardo!!
The hunt for Mickey and Minnie and a giant avocado.
It’s not a mouse, rat or rabbit, it’s a Bilby!!

Day 12, neutrophils 0.23, eating ok. Bag of platelets. Home ūüôā.
Hot shower. Ahhh. Comfy bed. Sleep.
Back to not committing. Not knowing. Just doing what we can.
Restore, refresh, recuperate, renew, relax. Breathe.

A full kitchen instead of the microwave down the hall.
Yay, fresh fruit and nuts, no longer waiting for the cart to come around.
Bacon.. Mmmm, bacon and fresh eggs.
Beeping machines, nurse call bell replaced with sounds of neighbours in their yard.
The heat. The dry. The warm sun.
Eat child eat and drink! Put on weight to avoid the NG.
Stop. Refresh. Relax. Rebuild. Prepare for it all again.

She went to hospital with hair on her head, and came home with it in a bag.

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.

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

7 Cycles Done, So What’s Next?

Chemo Cycle 7 done, only 10 to go, maybe‚Ķ Last week we found out a little more about what’s next. Before I explain that, I’ll point out Neuroblastoma is complex, this article describes it well:

Neuroblastoma is a spectrum of diseases with a wide range of clinical behaviors. Disruption of the normal maturation progression with different genetic drivers at different times leads to heterogeneity of tumor initiating cells. Interaction between different epigenetic and genetic factors complicates the task of defining a primary oncogenic driver or pathway for this disease. This results in a wide range of pathologies with highly variable responses to treatment.

So, determining the best approach takes lots of time and consultation.¬† You just have to look at the abstracts from the recent Neuroblastoma research conference to see there’s lots of research and trials. With that in mind, if I simplify cancer treatment into 4 buckets: chemotherapy, surgery, radiation & targeted therapy (immunotherapy/molecular). In frontline treatment Violet had all four and in relapse all four were are considered again, but determining which ones takes time.

For chemotherapy Violet is following ANBL1221, although this trial closed last year the TMZ/IRI combination is the backbone of many relapse trials. The trial says “treatment can continue for up to 17 cycles, about 1 year”, but depending on response as to when cycles will stop.¬† If you look at her latest results the cancer hasn’t run away, but it hasn’t fully retreated either, so¬†chemo is “keeping it stable”.

Resection of “Little Miss Weed” is currently not an option. It’s too risky to do the surgery and unlikely the whole tumor would be resected. The tumour is too close to many nerves and has likely invaded the skull. Doctors are surprised Violet has not had other symptoms (praise God!).

Recent consultation has been about radiation. During frontline Violet had external beam radiation to a number of sites (mainly abdomen where Mr Weed was, but also spine and legs). External beam is currently not an option for the same reason surgery isn’t, plus the tumour in her jaw isn’t the only location of cancer. Two other “Theranostic” approaches were considered where¬†diagnostic scans are used to calculate effectveness of therapy,¬†MIBG and DOTATATE. For MIBG, iodine-123 is used in the diagnostic scans and iodine-131 is the therapeutic (radioactive) agent, it has¬†been commonly used for in relapse (and now frontline) neuroblastoma. DOTATATE uses Gallium in the PET scan and Lutetium for therapy, is a newer approach, provides clearer scans and is an easier protocol. Violet said “I’ll do whatever they decide as long it’s the best treatment to kill her cancer”. So after scans for both, consolation across her primary oncologist, radiation oncologist, nuclear medicine physician / endocrinologist, physicists and 3 hospitals (thank the Lord for our health system) the winner is‚Ķ.. MIBG!. This will involve Violet being admitted to a different hospital (RBWH) that has specialist staff and lead lined rooms, she’ll be injected with the radioactive iodine and have 3 days isolated with ‘no contact’, as she’ll be emitting high levels of radiation. For a child who’s love language is touch this will be hard. After this she’ll require another ‘bone marrow’ transplant (with her own stem cells) as the radiation will affect bone marrow (and liver). Planning is underway by the specialists for this to happen in the next month or two.

From a targeted therapy aspect Violet will have immunotherapy (ch14.18) again which has shown significant advance in Neuroblastoma treatment. Although this is “pencilled in” there’s also a small chance the PRISM /¬†Zero Childhood Cancer results will identify a different approach.

 

So what’s the rhythm of a cycle look like?

Looking back at our day in the life post, it’s a “same same but different” scenario, things aren’t as intense, but there’s similarities. After doing this for 950+ days we’re fatigued easily, I think we’ve found a rhythm that we’re not taking on too much or focusing too much on cancer but still have time for us. The three week cycle typically looks like this:

3-week-cycle

A chemo day typically starts normally, then mid-morning antiemetics are followed by oral chemo (temozolomide). Then it’s pack snacks/activities, jump in the car and head into hospital for IV chemo (irinotecan). Door to door the hospital visit takes 5-6 hours, Violet is usually feeling pretty rotten by the time she gets home so often will camp out in her room and have a simple dinner of toast or jatz. The first day of chemo is 2-3 hours longer as they do port access, bloods and other checks. Through chemo and a week or so after she’s feeling nauseous, so the antiemetics are kept flowing. She’s on two types of antibiotics for different reasons, the regular one is to fend of broad range of bacterial infections that would get nasty on a compromised immune system. The other is used to stop/reduce irinotecan side effect of diarrhea. Violet often has insomnia, it’s usually before chemo or a procedure but can also be anytime, there’s not much we can do but help her get back to sleep (or after a few hours let her watch TV so we can get sleep). Without realising it, we usually get into the pre-admission tradition, upcycling, building sheds etc.

How’s she going?

This is a hard question, there’s a multitude of responses but it’s hard to know what people want or need to know or what I’m willing to say. I usually respond with “she’s going well” or “she’s alive”, both statements are valid, but there’s a more in-depth response‚Ķ
Medically: Latest results show she’s made 2 steps forward and 1.5 back, so treatment is moving in the right direction, slowly. She’s pretty good, she’s got a reasonable amount of energy. She eats (probably not the most nutritious stuff, but she’s alive). She’s often nauseous and tired. She’s not in pain as often (like she was late last year).
Physically: She’s got no hair and a nose tube, it’s confronting/intriguing to people who haven’t seen that before. I’ve shared how I previously responded in those moments. But the chemo is killing fast growing cells (like hair and cancer) and we don’t have to battle to get medicine down ‚ėļÔłŹ.
Mentally: She fine, she has her moments and sometimes needs encouragement/rewards but is often wise beyond her years with what she says.
Family: The attention on Violet affects us all in different ways. I won’t say it’s easy, but we’re coping, looking up, accepting support and taking it a day at a time.

Thank you ALL for your ongoing support and prayer, it is truly appreciated ūüôā

How have you done it… Really??

One of the things people said earlier this year was “I don’t know how you’ve done it”. ¬†To tell you the truth, neither do I. ¬†If I think about it, if we didn’t, who would? The reality is we were in survival mode.

I started these posts around the new year when I was reflecting about our “Christmas Break”. It was then I realised we were full, we may have “done it” but we couldn’t take/give anymore. We’ve days we’re feisty, irritated and just need space/time/quiet to get through. I’d say Christmas was ok, it wasn’t good or great, its hard just having other people in the house, let alone for Christmas celebrations. It got me thinking that it’s hard to convey where my capacity is at and it’s unlikely others will ever understand¬† and reflect on why I feel so full and overwhelmed.

If I think about how have we’ve done it, I can think of a number of things that have helped. I’ve split them into individual “How did you do it (HDYDI)” posts:

  1. God
  2. Marriage
  3. Mates
  4. Community
  5. Tips I’d give myself¬†at the beginning

Tips to other Parents [HDYDI – Part 5]

I read a post of a friend waking at 3am, thinking/worrying about their child and it reminded me of the early days with Violet. I wondered what would have helped me in the early days.

The top 4 things that keep me going are…

  1. Music – much can be said about music, I have a couple of playlists
    • My uplifting one – I listen to this in the car to/from hospital
    • Violets fun list – stuff she can dance and sing to when she’s up to it or we’re traveling in the car
    • Violets lullabies – stuff she listens to go to sleep
  2. Inspiration – Pinterest is a great source for quotes images etc.
  3. Breathing – the meditation type stuff I learnt at a mens group has helped heaps. I also watched a youtube on “the third space” it’s been good to context switch and focus – reflect – rest – reset
  4. Mates – some people will never get it, but good friends have allowed me to just call them and blow off steam

For each of these I have a strong God element to (as I shared in Part 1), which for me takes a huge burden away, but I know for some people that’s not the case.

Other things that help, that vary on importance depending on the circumstance are:

  • Food – it can be hard to eat right, but getting bogged down with fat and sugar doesn’t help your state of mind
  • Exercise – there’s a lot of proof that physical exercise helps with mental state of mind
  • Know your child
    • Know their love language, know how to comfort then and make them feel safe. It also helps when you need to help them feel safe during a procedure
    • During the early days, social work pointed out Violet had two worlds, Home and School. Hospital was a new world she’d have to get used to, and she has. We helped make this “new world” a fun place by playing games and having craft. This worked, Violet looks forward to hospital because she knows she gets 1:1 attention and to see all her nurse friends.
    • Get off your phone, how else will you get forced quality time with your child? ¬∑
  • Know yourself
    • I get hangry, it took me a few months to realise that it was a good idea to get up and eat before Violet woke in hospital, otherwise I’d end up grumpy, I’ve also previously written about the emotions I go though before a hospital stay
    • I get comfort in order and organisation. Cancer is neither of these things, but I found if I could get some routine, organisation I’d feel better. One of the ways I did this is having a couple of notebooks that I captured different things: Inspiration, Funny things that happen, Overall dates, Medications, Questions for doctors, Hospital day trip checklist, Hospital admission checklist.
    • I’ve learnt that I enjoy writing out my thoughts, whether I share them or not, it helps me put my thoughts to rest and stops me dwelling on them
  • The Red Kite parent connect groups run every second Wednesday are great to hear others are going through similar struggles
  • I found Kids Don’t Get Cancer¬†is a great book by Michael Crossland
  • The internet can be a trap
    • I find some Facebook groups and forums can be a bit of spiral of desperation, be aware if you’re getting into that trap. I’ve recently found a good closed ‘survivors’ FB group, I’ve also heard mumcology groups are good
    • For me, there’s been times I’ve got buried in internet facts, figures, numbers and been overwhelmed – in those time, snapping my mind out of it by saying “my daughter is still alive”, “live for now” and “it could be worse” has helped.
  • Be thankful for what you have. You’re in a country that has health care, your child is alive. Try to see the upside, in a twin room it’s unlikely your child is infectious

Yep, this has been a bit of a brain dump, and I could talk for hours. If there’s one thing that helps others then it’s been worth it!

Community [HDYDI – Part 4]

“it takes a village”

I can say I didn’t know who was in my village until Violet got cancer. Thinking about it, the village is made up of multiple communities, who have all had different impacts:

  • Family – from visiting, to living with us to providing great support. Someone really enjoyed the facetime calls too
  • Friends – Surprise survival packs, car parking cash and random supportive texts!
  • School – WOW, food, picking up kids… I honestly didn’t know what chappy’s did, but now couldn’t be more grateful
  • Church¬†– ¬†prayer, food, house cleaning, lawn mowing
  • Work – passing around the hat, getting extended time off work, complete understanding when returning to work and supporting fundraising efforts
  • Hospital – nurses, doctors, occupational therapists, social workers, so many passionate people we got to know.
  • Paediatric oncology community¬†– No one really knows what you go though, except those closest to the same fire as you. We’ve met some incredible parents in the oncology wards!