The Journey

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. ...

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. ...

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. ...

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. ...

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) ...

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.” ...

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. ...

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). ...

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. ...

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… ...