5 months down… 8 to go

As we say goodbye to the induction phase we now have more clarity on what lies ahead for Violet in the consolidation and maintenance phases. This is a marathon, the finish line is not in sight yet, but we continue to run!

Last week Violet went through re-staging to determine treatment effectiveness and any damage treatment may have caused. It’s only 10 tests over 4 days (GFR, MRI, MIBG, CT, Audiology, Catecholamine, Haematology, Bone Marrow Aspirate, Echo and ECG).

To recap where Violet started:

  • Constantly felt sick in her tummy and in her head
  • Consistent low grade fevers
  • Nauseous even for the smallest car trips
  • Pain to the point where her walking was starting to be affected (which was curbed by regular MSContin and Oxycodone for breakthrough)
  • Large primary tumour on her left adrenal gland
  • Secondary sites throughout her body and marrow, through most of her bones with hotspots at the back of her skull, on her jaw, her spine and legs

After 162 days, 70 nights in hospital, 192 episodes of Full House, 80 blood tests and a single modality of treatment (chemotherapy) Violet is feeling much better:

  • Temperatures in normal range
  • She’s less nauseous
  • Not on regular pain medication
  • Primary tumour removed
  • Secondary sites appear to be gone – marrow is clear as is the back of her skull and (questionably) her jaw
  • Secondary hotspots on her spine and legs still remain, but don’t appear to have grown.  All other bones are clear.
  • Immune system reduced
  • Some hearing loss (high ranges above normal speaking/singing)

The next 8 or so months will be continuing to fight the remaining cancer and enhance her immune system. This means our regular hospital visits won’t be ending any time soon.  Violet will finalise chemo and take on two other modalities of treatment (radiotherapy and immunotherapy):

  • Next week, her last and most intense chemo cycle starts
    • The chemo cocktail is not one she’s had before
    • Violet will be heavily neutropenic for 2+ weeks, as such
      • will be isolated to reduce risk of infection
      • her own stem cells will be transplanted back into her to “rescue” her white blood counts
    • It’s likely she will have high gut toxicity and rely on TPN for nutrition
  • Once recovered from chemo, Violet will have 4-5 weeks of daily radiotherapy in her abdomen (and possibly her legs)
  • After radiotherapy, immunotherapy begins. Immunotherapy is 6×4 week cycles:
    • Week 1 will be antibody therapy, in hospital (probably treating the pain side effects with morphine)
    • Week 2 is a break
    • Week 3 & 4 is daily retinoid therapy

All going well, this will take us to mid/late December and treatment will be over. However, if the cancer is progressive, then there are 3 or 4 other treatments/protocols that can be carried out to get rid of this nasty disease.

 

Thank you for your ongoing support. Your prayers, meals, school pickups, finance and encouragement are greatly appreciated to help us help our girl get through this.

Your continued prayer in the following areas will be greatly appreciated:

  • Health for our whole family to support Violet
  • Violet has no infections
  • Violets’ treatment continues to go to plan
  • Secondary sites shrink/die and further treatment is not required
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The Journey So Far

After a couple of months of “not being 100%” then 2 weeks of diagnosis at Lady Cilento (LCCH), on 12 November 2015, my youngest of three children, Violet(6) was diagnosed with stage 4 Neuroblastoma, a tumorous cancer  slightly larger than a tennis ball (78 x 66 x 83mm) growing on Violet’s adrenal gland on her left kidney. Being stage 4 the cancer has metastasised and is in all her bones and marrow. Childhood cancer is rare, and neuroblastoma in kids older than 2 is rarer.

Violet is now in the 4th chemotherapy cycle (of 6×3 week cycles). After chemo, there’s surgery to remove the tumour, radiotherapy, then antibody therapy. Overall a 12-24 month treatment protocol. Lucy has a Tumour is a kids book that gives a good overview of the process we’re going through, this page give a bit more detail on what the actual treatment protocol is, but as I’ve learnt over the last month, the only constant is change.

VioletViolet is adapting well to the new normal, she has her off days (usually around the first 10 days of the cycle), however she is mostly up. As you can see by the photo her smile and cheeky nature still shine through; she’s an inspiration to us all.

Colleen and I have been blown away by the support from our family, friends, school and church during this time; with the biggest support from my parents who cancelled one of their 2+ month retirement holidays and have moved in to help with Oliver and Piper and around the house.

I couldn’t speak more highly of the LCCH facility or staff, the media likes a bad story but LCCH is first class and I haven’t come across more dedicated, passionate people than those that work and volunteer there.

My work has been awesome with their support and have helped take the worry of work away for a while. Colleen has put university on hold for a little while

There is so much more I could say, but if you want more direct updates please friend me on FB or join the Violet Help FB group I’ve set up.

A Day in The Life

Re-posted from FB note from 28 Dec 2015.
Depending on the day and where we are I’ve tried to capture our “new normal”, how our daily routine has changed and what it looks like as well as uploaded some photos. There is so much more that goes on and happens, but hopefully this gives you a little bit of an idea.
At this stage a chemo cycle is 3 weeks long, 3-5 days of chemo as an inpatient hospital then 2ish weeks of “recovery” at home. Every week we have a day as an outpatient in clinic to have a check, get supplies/medications and replace dressings. Violets treatment will be 5 cycles like this, then surgery to remove the tumor then another chemo round before radiation and a few more chemo rounds. After that there is antibody therapy.

At Home

Things haven’t changed that much at home, it’s just been getting use to the medication routine and keeping a little be it of a closer eye on Violet.
  • 0700 – stop continuous feed. Wake, sometimes we’re lucky and the other kids will play quietly and Violet will sleep in
Be-Bop.. the feeding pump, and his specially built pole and trundle.
0730 – Breakfast & start bolus feed via be-bop (feed pump for the NG tube)
  • 0800 – Morning medications (slow release pain, anti fungal & antibiotic[Mon-Wed])
  • 0830 – Bolus end
  • Throughout day, if she’s feeling nauseous we can give her antiemetics
  • 1200ish – Lunch & bolus feed
  • 1600ish – GCSF injection
  • 1800 – Dinner, bolus feed & antibiotic [Mon-Wed]
  • 2000 – slow release pain med
  • 2100 – start overnight continuous feed
But wait… just when you think you’re in a rhythm at home, there are any number of reasons to head back to hospital.. Temp above 38 / Shivering or unwell after central line access / Difficultly breathing / Bruising etc. As the immune system is beaten up during chemo any infection can be very dangerous, so getting back to hospital to start observations and antibiotics is crucial.

Clinic day

  • 0630 – Antiemetic before/when she wakes

    I’m learning how to be a great backseat driver.
  • 0700 – Wake
  • 0730 – Breakfast & morning meds (slow release pain, anti fungal & antibiotic[mon-wed])
  • 0800 – Drive in, hopefully antiemetic is working by then, but one of is sits in the back with Violet (to catch the motion sickness vomit)
  • 0900 – Arrive and spend 5-20 mins looking for carpark
  • 0925 – Coffee (important part of every day)
  • 0930* – Checkin, get height and weight taken
  • 1000* – Dressing change and central line plug change

    If we’re luck we get a “gift bag” or two during the 30-50 min drive.
  • 1100* – Oncologist consult
  • 1200 – drive home, one of is sits in the back with Violet (again)
* – much waiting (1-6hrs) can happen, also mix in some other random other tests (ultrasound, audiology, xray, bone scan, MIBG, CT, MRI, GFR, urine, nasal/anal swabs)

Hospital day

  • 0000 – Observations (obs) – temperature, blood pressure, pulse, oxygen. If in isolation, the nurses wear plastic gowns (like raincoat), so it’s quite loud.
  • 0400 – Obs
  • 0500 – Blood taken
  • 0600 – Medication
  • 0730 – Breakfast
  • 0800 – Meds & Obs
  • 0900 – Dr visit
  • 1000 Allied health visit (occupational therapist / social worker / dietitian). Hyperhydration start (increase IV fluids for chemo)
  • 1200 – Obs
  • 1230 – Lunch, if we’re lucky the smell doesn’t make her vomit. Most of the time in hospital Violet is so nauseous that she doesn’t eat, she also doesn’t like to see or smell it (so we can’t eat in front of her)
  • 1330 – Chemo (this varies depending on the cycle, she can be hooked up to 30mins or hours)
  • 1600- obs, antimedics, hyper hydration ends
  • 1730 – dinner (cover nose to hide smell)
  • 1900 – Dr visit / nurse shift change
  • 2000 – Obs & meds
  • 2200 – meds
All day – safely capturing and measuring urine, faeces & vomit (ie. Chemo is cytotoxic, so any output up to 7 days after administration needs to be disposed of safely using gloves, even when we’re at home)
The first day of a chemo cycle is a full clinic day then move up to the ward at 5-6.

Other Bits

Beyond the day to day, some things carry over (regardless of being at home or hospital)

Medications

We’ve had to find another cupboard to keep all the medications in
It’s not as easy as drawing up liquid and giving it in the NG tube, there are some capsules to mix with water, tablets to be halved and crushed, power to mixed in 10ml(but only give 6ml). There are viles to mixed with water then injected. Plus the boxes of feed needed to keep Violet’s nutrition up. We’ve got into writing everything down so we know when we gave what and if needed can tell the ED/Doctor. The regime/timing of meds in hospital is the same as home, however the antiemetics are given more regularly and via IV (so they don’t come up again). Surprisingly, panadol beats fevers and headaches, even over the hardcore meds.

In the middle of the night…

 On top of the additional bad dreams and wet beds there’s the ‘beee bop’ of the feeding pump. In hospital the added pleasure of IV pump alerts, doors opening and closing, the the noisy “raincoats” nurses wear if we are in isolation.
Colleen and I take turns of “sleeping” at the hospital. With all the activity it’s not easy and are heightened awareness that we can get a little irritable.
…couch during the day.
Bed at night…

Blood

I knew a little about blood before this, but now understand a whole lot more. Chemo knocks Violet around a fair bit, and based on her results as to how as to what they do..
  • Low hemoglobin – full transfusion (Violet has had about 4 to date)
  • Low platelets – platelet transfusion (Violet has had 2 bags of platelets)
  • Low white blood / neutrophils – not much can be done but wait and be very cautious not to expose Violet to anyone who’s sick.