7 Cycles Done, So What’s Next?

Chemo Cycle 7 done, only 10 to go, maybe… 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….. 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 PRISMZero 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…
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 ☺️.
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 🙂

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You’ll never really know

I partially wrote this to remember how tough some things were/are. I partially wrote it so others might ‘get it’, knowing some never will. It’s a slightly different view on my ‘I see you friend‘ and ‘pre-admission tradition‘ posts.

There’s a lot that can be inferred or assumed by a nice photo, forced smile or positive post, but there’s also a lot that people don’t see or feel. This post may be a little dark (which is not a place we usually are), but it’s the reality of some of my thoughts and days.

You’ll never really know…

  • The actual risk of infection. Seeing kids who have been isolated in hospital for months, taken to ICU and passed away becomes a real threat.
  • What it’s like to choose quality over quantity of life for your child
  • How hard it is to have faith in God when the medical stats say different
  • How emotionally full and tired we get that…
    • Your capacity to deal with others is zero
    • holding a conversation is difficult
    • the presence of someone else is irritating
    • The right words to describe things just don’t come out
    • You don’t have empathy for what others are going through because it seems like ‘less’ of a burden than what we’re dealing with
    • Feedback is taken as a personal attack
  • That any routine I can grasp is a safe place
  • How hard it is to take your child to hospital to make her sicker than you’ve ever experienced, because you know it will make her better in the long run
  • How important is is to wash your hands
  • What diarrhoea really is until you’ve dealt with the stomach lining and gastrointestinal tract being purged from chemo
  • To be on edge…
    • EVERY time your child coughs, to be on guard, because that’s how vomit starts
    • EVERY time someone near your child coughs, to be on guard, because that’s how viruses and infections start.
    • every night, ready to get up and calm her from bad dreams then sleep on her floor
  • How much we enjoy silence and or own space
  • How to juggle the emotions of the other kids, how much it hurts to not have enough time to make them emotionally resilient
  • What is like to find activities out of the sun because your child has super sensitive skin
  • What is like not to have a swim because your child has a central line
  • What it’s like to wrap up your child in plastic for every bath so their central line doesn’t get wet

 

Waves in my ocean seem like tsunami to others and a drip to some. Perspective and empathy for others is also something I ponder, I may never know:

  • What others go through, children with lifelong or more debilitating illness
  • What it would be like if we were regional and had to travel long distances to hospital
  • What is like for a grandparent to see a grandchild suffer and your child to deal with it
  • What being referred to paediatric palliative care would be like

James has it WRONG!

James 1:2 has it seriously wrong…

when troubles of any kind come your way, consider it an opportunity for great joy.

Troubles are an opportunity for great joy!! I’ll give you troubles! My child has cancer, where is the joy in that?
– Watching her much loved hair fall out…. Joy! Err no.
– Catching vomit… No joy there
– Preparing her for yet another procedure… what can bribe, err reward her with? Joy? no.
– Dealing with the constipation/diarrhea pendulum… Umm maybe the joy of hidden in one of her nappies.
– Sleepless nights.. Joy joy joy

Let me read on (in James 1:3-4), maybe James was joking… They do that in the bible!…

For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Yay! Nothing like having my endurance tested. Being a father of three kids is great and it already feels like an endurance marathon (not that I’ve ever done one of those). But let my faith be tested so my endurance can grow! I guess I can look forward to being perfect and complete, needing nothing at the end of this.

OK, maybe James’ letter want meant for me… Let me look up other verses… My middle name is Peter, he must be a nice bloke, lets look what he’s got to say in 1 Peter 1:6‭-‬7

So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

Nope, looks like Peter and James colluded to write the same thing. So, “trials will show my faith is genuine”, is there an easier way? At least if my faith remains strong through trials, it will bring me much praise and glory and honor. Maybe i should keep reading 1 Peter 4:12‭-‬13

Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad—for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world.

Umm, nope.. surely Peter had something else, here we go 1 Peter 5:10

In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation.

OK, time to dig some more.. Paul wrote a fair bit of the NT, surely he’s written something to the Romans, here we go 5:3‭-‬4

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation.

RIGHT!!! I give up. You win Bible! I get it, I need to have problems and trials, I’ll be better for it. I know you’re right, I guess I was in denial.

As you may of guessed, I’ve gone on a bit of a journey with these verses over the last year. Initially they were hard to chew on, but now I truly love them. My favourite is James, which I put up in the bathroom cabinet a few months back so I see it every time I brush my teeth.

Life can be hard. I don’t know for sure if praise and glory and honor awaits, or if I’ll ever be perfect, complete and needing nothing. I do know when I let God carry my burden, things are easier. So this is where faith kicks in, although I don’t know this with happen, I feel, trust and hope it does.

There are MANY other verses I’ve had revelation with over the last year, if I get a chance I’ll share them too.

Pre Admission Tradition

Pre Admission Tradition

Over the 300+ days since diagnosis, 100+ nights as an inpatient across 16 admissions there’s a few things I thought I’ve picked up about the way I feel leading up to, during and after a hospital stay….

A week before admission

Yeah! I think we’re back to normal (or have adapted to the new normal), time to take on that next bit of renovation or gardening.

The week leading up to admission

As we subconsciously think about things (sleep deprivation, disruption to routine, juggling the older kids emotions), anxiety creeps in in various ways, usually by getting irritable for no reason.

Everything is normal, there is nothing to see here (kids can sense fear/worry/anxiety)

Ignorant bliss while secretly preparing… The easiest way to explain this is by example… Say last time we were at hospital we ran out of disposable forks and we know the best place for them is at a specific cheap shop, instead of saying we’re just going to the shop to get some forks we make up a story like “I’m going to the cheap shop to get some paper” (knowing full well we don’t need paper). Between us we know the real story.

The weekend/days before admission

Celebrate & enjoy, have favourite dinners breakfasts, watch movies.

Quick, do everything that we could have done in the last 3 weeks now!

Get those monkeys off our back that have been there for months … wash the car, clean the driveway, repair clothes, mow the lawn.

Pack. Colleen has reduced this down from 15 bags to one big bag (+3 bags of craft/activities)

Day of admission

Patient patients. Waiting, waiting, distracting, waiting.

Central line dressing change.

Can we go upstairs yet? In the bed lottery, where will we end up?

Get the bed, unpack, setup, wait.

Get hooked up to medication.

Craft, craft, dance, craft, full house, craft.

Days in Hospital

Sleep deprivation.

Depending on protocol, we’re on edge waiting to catch vomit, change nappies, comfort or entertain her.

Time breaks so we can eat and get coffee.

Juggle older kids school drop off so they have quality time and feel loved.

Find time for self (if possible).

If we’re ‘lucky’ and she’s an inpatient on Monday, we get the ‘pleasure’ of giving her a nasal and anal swab (two swabs, not one 😉). Mondays are more affectionately known as ‘Monday Bumday’.

As the stay gets longer, the hospital food becomes more appetising, the hospital bed is comfortable, the toilet paper is soft and you learn how to sleep and eat in sprints, one day blends into the next. What day of the week is it? Who cares.

We’ve pretty much got the routine of a week day sorted. Drop off kids, swap at hospital, sleep, repeat.

Day before discharge

Meh, one more day to go, don’t bother about replenishing food/craft stocks… Or should we?

Day of discharge

Patient patients. Waiting, waiting, waiting.

Drip, drip, drip. When will this end? WHAT, what do you mean there’s a second flush?

Just when you think you’ve seen the last person there’s one more too see and give going home instructions (oncologist/pharmacist/dietitian/liaison nurse).

Where is the doctor? Will we get the green light to go?

This day can be groundhog day, if something isn’t right and she doesn’t get the green light, its another day in hospital…

If we get to go, woohoo, everyone is happy, another admission over, but the fun doesn’t stop there.

Days/nights post discharge

Balancing the emotions of a very ‘not tired’ 6yo who’s had 2:1 attention and now has 0.5:1 attention (if she’s lucky) against the other two who just want time against the need to catch up on sleep requires LOTS of breathing.

Slow days to catch up and allow Violet time to get back to normal from side effects.

Get familiar with new medication regime.

Often nights are spent sleeping on Violets floor, either to comfort from nightmares or to deal with side effects (vomit/diarrhea/pain). There are definately some similarities between this and having a baby.

A week or so after discharge

Life is back to normal.. or a new normal.

Violet’s Diagnosis Story (the long one)

Violet’s Diagnosis Story (the long one)

In August last year, 5 year-old Violet had a bout of gastro. Although the vomiting lasted only a day or 2, she continued to feel sick and lethargic in the weeks following. She complained frequently of ‘feeling sick’ particularly in the mornings before school and when in the car. She’d also complain of aches and pains just like most growing kids do. I would keep her home from school after tears in the morning and then she’d be fine all day. I put it down to separation anxiety, because in general she really enjoyed school. I was studying at the time and I thought maybe I just needed to spend more time with her.

After her second lot of gastro, I took her to the GP for a check up. She was feeling fine by then and he couldn’t find anything physically wrong with her so we left it at that. Her symptoms soon returned – tired, cranky, crying, complaining of body aches, loss of appetite and constantly complaining about her stomach. Then she developed low grade fevers that completely wiped her out. I took her back to the doctor and he ran blood tests showing a low blood count (low iron) and inflammation. The viruses he tested her for all came back negative so he told us to take a stool sample.

One night, (after 7 days of fevers) I ended up taking her to emergency as she was rolling around the floor crying in pain. I explained her list of symptoms, including how it hurt her neck to look up. After many doctors poked, prodded and scratched their heads, they decided it was probably a food intolerance of some kind and they told me to take her to a gastroenterologist. I asked the senior doctor if they could give her an abdominal ultrasound and he said that unless they had a suspected diagnosis then there was no need. By then Violet was feeling OK again, they said there was nothing else they could do and I left without answers.

Our GP called us in a few days later with results of her stool sample (it took a few days to get one as she hadn’t been eating). She was positive for 2 different parasites, one of which matched all her symptoms except that she hadn’t had diarrhea which is usually the most tell-tale sign. Finally (we thought!) we had an answer. The Doctor prescribed some antibiotics and we left for a much-needed family holiday. We waited to see some improvement, but knew that it could take several courses of antibiotics to completely eradicate the parasites.

Our holiday was anything but relaxing with a sick, cranky child who had no energy to do anything or go anywhere. At the end of the week, we returned to the GP for a follow-up and ironically Violet was bouncy and happy. Perhaps the antibiotics were finally working. Our GP gave us a blood form to do a test in 2 weeks if she wasn’t completely better and told us to return if she worsened. She had now had fevers for 2.5 weeks. That weekend she was feeling sick again and her fevers spiked. I was so over the roller-coaster by that point, that I cracked. I was tired of second-guessing myself. It took getting to this point to realise that ‘enough was enough’. We needed answers.

First thing Monday morning Craig and I called our GP. He was very supportive and told us to go get a blood test and then come straight in. He sent us for a chest x-ray and then on to the hospital with the test results and a referral letter. The results were inconclusive. Once again, while we were ‘interrogated’, Violet was poked and prodded by many doctors, until one of them thought they felt something on the left side of her abdomen. Finally they sent her for an ultrasound. We returned to our ‘cubicle’ after the ultrasound and the Doctor explained that they had found a large (8cm) mass near her left kidney. “You don’t seem surprised.” the doctor said. All we could think was that we finally had some answers.

We were referred to the Lady Cilento Children’s Hospital where many tests were run over the following week. By this stage, she had deteriorated so much she could hardly walk. Her fevers continued and she was on a cocktail of pain meds. Although we now knew that it was cancer, her diagnosis shocked us. Stage 4, Neuroblastoma. An 8cm solid mass on her left adrenal gland, above her kidney that snaked alongside her major arteries. The cancer was throughout all her bones with ‘hotspots’ in her skull, legs and spine. Every ‘ache’ that she had complained about was cancer, slowly sucking the life from our precious little girl. At this stage she was given a 50% chance of survival (this was later reduced to 25%).

It’s now been 9 months since Violet’s diagnosis. She’s had 7 rounds of chemo (all of which made her incredibly sick with many extended hospital stays to treat the side effects), a 9 hour surgery to remove her primary tumour and her left kidney, 20 days of radiation to various parts of her body (also making her very ill) and a bone marrow transplant. She is currently undergoing 6 months of ‘immunotherapy’. This involves a constant rotation of a cocktail of drugs that are injected, infused and shoved down a tube with a myriad of side effects. She is hospitalised while administering some of them so they can treat the side effects with anti-convulsants, morphine and a list of others medications. She will lose her hair (again) after just starting to have it grow back. The long-term effects of these drugs are not known because they are still being trialed.

Yes, it all sounds fit for torture, but Violet’s story is just one of many. There are many other children who are worse off. It’s time to make a change. We need earlier and easier diagnosis, more effective treatments and side-effects that aren’t going to cause a secondary cancer later down the track. We need to back the researchers that have already done so much but have such a long way to go. What would your response be if it were your son or daughter? Please help support this research and help change the lives of the Violets of tomorrow by donating http://bit.ly/VoT-Donate.

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.

Watch what you say

Yesterday was tough, but a good slap across my face too. It was after my first night back at hospital after being sick for a few days and I was over it, wanting to get home ASAP. I told Colleen the same on the phone and Violet was listening. Violets’ attitude changed after that, she wanted to go home and was grumpy and over it!

It was a massive reality hit, how must my daughter really feel? She has been in these 4 walls for 13 days and still has at least another week to go with her BMT. At least I get to go home every other day. This isn’t about me, I need to HTFU, step up and be there for my wife and family. I also need to watch what I say and do in front of my kids. It’s easier said than done and really hard when you’ve been sick and tired.

That was yesterday, a day to learn hard lessons that I’d previously learnt but forgotten. Today is a new day, a day to appreciate what I have, lift myself and my family up. Look up. Believe. Love. Know God is there.