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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8 thoughts on “5 months down… 8 to go

  1. Craig thanks for the up date, Your family has been through so much. Little Violet is a brave little girl, but then so are her parents. its is so hard on all the family, even the extended ones are thinking of you all and praying for you as well.

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  2. Thanks for the update. I have friends and some of my family asking how she is so now I can let them know exactly where she is up to with treatment 🙂 ❤

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  3. What a tough road you travel. How lucky you are to have each other. god bless little Violet. May you continue to gain strength from your faith and your family and friends. Baxters xxxx

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