THIS IS STILL A DRAFT, but the shell is here
Last month I got covid, even though I was double vaccinated I woke with a fever, aching bones a splitting headache and feeling terrible; it got me thinking of the hundreds of times Violet felt like that over the years. As she was constantly in pain, we wondered if she just grew to live with it and she knew no different.
At Violet’s funeral her school shared how “If Violet can, I can” became a common phrase of encouragement. When I first heard the phrase my initial thought was she/we did what she had to; we know of others who went through rougher stuff. My hit with ‘mild covid’ got me thinking, yeah Violet felt like this lots; if Violet can, I can.
I’ve since thought how do I quantify what she went through. Over the years I documented her high level treatment in Excel. Below, I’ve split those metrics into some graphs and some stories around that to help explain the magnitude of things Violet went through.
10,000ft Summary
The following table simplifies 6 years into 4 monthly slices, showing disease progression/regression and treatment pathways.
Complete Response (CR), Progressive Disease (PD), Partial Response (PR) & Stable Disease (SD)
5 relapses
5 times we looked into the glassy eyes of our oncologist and were told treatment wasn’t working and Violets disease had progressed. 5 times we told Violet treatment wasn’t over, but we’d help her keep fighting. 5 times we weighed up options and chose the most appropriate path.
The relapse roller coaster looked like this
- 12 November 2015 - Officially diagnosed with Stage IV Neuroblastoma (after a few months of badgering GP’s, ED attendance and 2 weeks of in hospital diagnosis tests)
- 28 February 2017 - Frontline treatment ended, cancer all but gone apart from tiny amount of stable disease in soft tissue near her right jaw. YAY!
- 12 December 2017 - after 10 months of good reports we decided to celebrate and “Ring the Bell” to signify the end of treatment. On the same day we got results from her recent scans, there was growth near the stable disease. RELAPSE 1
- 22 November 2018 - After 13 cycles of chemo and 20 fractions of radiation the cancer started to respond and shrink. YAY!
- 5 April 2019 - After another 5 cycles, the news wasn’t as good, although growth had stopped near her first relapse site, there was progression in her bone and marrow. RELAPSE 2
- 25 October 2019 - After 3 rounds of Radionuclide (lutetium) Therapy, any bone growths were gone, but disease in her marrow had progressed. RELAPSE 3
- 15 February 2020 - 3 cycles of chemotherapy cleared bone marrow and dramatic reduction of disease. Where previously there was obvious involvement now just a dull shadow. YAY!
- 25 June 2020 - 3 cycles of chemoimmunotherapy later scans confirm the aches and pains Violet’s been having are cancer behind her right eye, in her marrow and other locations through her body. RELAPSE 4
- 27 November 2020 - scans show there is no evidence of disease. This is the first time since 2015 she has been cancer free. WOO HOO!! A few more cycles of chemo will help kill the bits that can’t be seen on scans.
- 21 January 2021 - last cycle of chemo completed. Treatment complete. YAY!! The last few cycles of chemo have knocked her around a bit requiring multiple bags of blood products to before her marrow could produce effectively again.
- 13 April 2021 - Scans show the cancer has returned everywhere. RELAPSE 5. Her body is so fatigued from so treatment over the years that that is not an option, there are a few phase three trials that don’t really suit. Options for central nervous system relapses after this much treatment are limited. She’s palliative, it’s hard to estimate how long she has left with us.
- 11 October 2021 - Oral chemo and some radiation gave us another 6 months with Violet. One of the hardest things was not telling her because we knew it would break her. She did ask a few weeks before she passed, she took it well and knew heaven would soon be her home.
5 Christmases & Birthdays
We were very blessed not to spend a Christmas or any of Violet’s birthdays in hospital.
Christmas 2015, 2016, 2017, 2018 & 2019 Violet was either on treatment or we knew the cancer was back and she’d be starting treatment again soon.
For Violet’s 7th, 9th, 10th, 11th & 12th Birthday she was on treatment.
Diagnostic Procedures
MRI Mibg - 2 days Ct - different parts, stupid fluid, moved to MRI Ultrasound - although not the regular, it was the first scan that picked up the mass in Violet’s abdomen. GFR - Kidney function Ga-PET -
Chemotherapy
Chemotherapy was the predominant treatment Violet
Busulfan, Cisplatin, Cyclophosphamide, Doxorubicin, Etoposide, Irinotecan, Melphalan, Temozolomide, Topotecan, Vincristine
All up 21 X 5 day cycles of Intravenous Irinotecan & oral Temozolomide
Radiation
** Fractions (days) in 3 seperate times (2016, 2019, 2021)
50 Percent
50% is an interesting number.
of Life
Roughly half Violet’s life she had cancer and was being treated for it.
Specifically,
Chance of Survival
That was the initial chance of survival
nights in hospital
Tax
Thank you for paying your taxes. .. this number does take into account… … reduction in medications (PBS + hospital subsidised), some in thier thousands. … Bed costs - sorry couldn’t extract from private health … Allied health (social work, occupational therapy, music therapy) … Experimental therapies - lutetium … Hospital in the home … Palliative care team … Parking & fuel … Unpaid overtime of healthcare teams … Lost productive workforce You can’t put a dollar figure on saving a life. And the time we spent being patient patients, crafting, dramaing, singing, reading watching was priceless
Bone Marrow Transplant
In a time when double want proven..
Blood Pressure
70s on 40s … Yes that’s her normal, Lin at the notes
Fifth of the Tenth
Vrb fifth of the tenth oh nine Allergic to platelets, posi flushes and remove wipes.
Resistant Bacteria
Extended spectrum beta lactamase (ESBL) With one kidney and a weakened immune system this usually meant a unary tract infection required IV antibiotics in hospital.