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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#HospitalHack 1 – Coffee

I love coffee, and it’s awesome the hospital provides coffee, of the Blend 43 variety. I’m not a coffee snob, but Blend 43 doesn’t count. Well, Blend 43 counts if you really need caffeine, then it’s bearable, only as a double shot with sugar (ok, that’s a little snobbish, and I feel a little bad knowing it’s roasted down the road). Anyhow, my preferred coffee is an small (8oz) double shot skinny latté with no sugar. I do like it slightly bitter, so if there’s a choice of coffee shops I’ll hunt to find a blend I like.

Here’s the dilemma; how do you get a fresh espresso, stay bedside to comfort your 6 year old and catch vomit at the same time? Yes, you could just run out and get one and clean up the mess later, but it’s a rare occurrence Violet is in a condition that would allow us to leave. Yes, you could start a coffee cart business in the hospital, but I’m sure there would be some sort of rule/legislation against that. Most of the time you wait for a visitor to relieve you or go the Blend 43 route.

The answer? Cold Brew! With 10-15 minutes preparation, 12-18 hrs in the fridge you can make a great tasting coffee faster than a vomit.

With some experimentation I’ve found the perfect drop. So how do I brew it:

  • Place 125g course ground beans in a large coffee plunger/French press.
  • Slowly pour 1.25L of cold water over beans.
  • Cover and place in the fridge.
  • Wait 12-18 hours (I usually make it at about 3pm then plunge at 7am)
  • Plunge and pour into 1L bottle

The brew easily lasts a week in the fridge (depending on how big your habit is)

To make the perfect cup, I get a small glass and mix 2/3rds cold brew and 1/3rd milk. Yes I drink it cold!

Cold brew isn’t for everyone, it is a slightly different flavour, but one I like. Colleen, not as much, she’s taken another route and is happy to bring her Moccona to hospital, get “boiling” water (avoiding styrofoam cups) then reheat in the microwave.

Things I’ve tried:

  • Beans – different beans produce different results; espresso blends tend to make the mix bitter and doesn’t need to be brewed as long. I’ve also tried using more/less beans:water ratio and settled on above.
  • Bean Preparation – the toddy system says to gently layer water and beans, I found no benefit
  • Time – the longer it’s brewed, the more bitter the result, I’ve found 12-18 hours is the sweet spot.
  • Water – although some people have taken this to the next level. I’ve tried tap water and cooled boiled water, I find water out of the fridge the best fit.
  • Heat – I read that you can heat the coldbrew before drinking to give the traditional expresso taste; I disagree, I think it changes the flavour for the worse
  • Milk – I’ve tried without milk and different ratios, for my tastes the 1/3 milk ratio is perfect

You know you’re a father of a 6yo girl with cancer when…

Over the last few months of being at hospital I’ve created a list of things that indicate I’ve got a girl with cancer:

  1. Vomit bags decorate the house
  2. You can talk the medication lingo Ondanse, Max, Dex, Loraz, Oxy, Lasix, Cyclo, Vinc, Dox, Cisplat …
  3. Don’t go to the beach or swimming as you know the central line can’t get wet
  4. A ‘day pack’ now includes a medications you know the ED don’t regularly carry
  5. You know your childs’ name, date of birth and allergy status
  6. It’s not uncommon or uncomfortable to have conversations about wee poo and vomit (much like when you have a baby)
  7. You know how to be a patient patient, you’ve jumped the queue before when things were serious, so you know why there are people ahead of you.
  8. Much patience and flexibility is required to get your child to do what you want (choose your battles, look for distraction/rewards, give limited choice)
  9. You know your childs’ name, date of birth and allergy status
  10. You know your childs hospital ID(UR) number
  11. You not only know all her stuffed toys names, but their attitudes
  12. Know that sometimes it’s easier to hook up NG feeding than have the one hour I’m hungry but I don’t know what I want conversation
  13. Have a hospital day bag always half packed ready to go
  14. Have a check list of the things not to forget for a hospital day trip
  15. You know your childs’ name, date of birth and allergy status
  16. Know that the car park full sign means you’ve still got 90% chance of finding a park (even if it takes 15 minutes to find it)
  17. Drink sensibly and keep under the limit, in case you have to drive back to hospital
  18. Know what is like to sit in the back seat of your car
  19. Can scan a room full of kids, pick out the one with a runny nose and divert your child from going anywhere near them
  20. Know that it takes at lest 2 hospital ‘towels’ to dry yourself
  21. Wash your hands before, during and after eating
  22. You have a three vomit bags in site at all times
  23. Stickers, the prize box and playdoh are currency
  24. Know the smell of an antibiotic wee
  25. Eat smelly food outside the room.. Unless you don’t mind catching vomit while eating.
  26. Don’t eat spicy food, just in case the after effects cause …vomiting
  27. Are skilled at the art of waking from a deep sleep, jumping out of bed and catching vomit
  28. Think you’re good at ‘biting your tongue’ when you’re tired and cranky and have an opinion on return everything
  29. You know that you can’t play Happy Chef in the iPad when she’s nauseous
  30. You know the difference between a cough and a the start of a vomit … ahh.. No, no you can’t
  31. Paper towel is the official note paper of nurses
  32. You can cook bacon and eggs on an underpowered sandwich toaster without fire alarms going off
  33. Blend 43 tastes ok if it’s double shot with two sugars and you really really, really need to be caffeinated
  34. Have no trouble discussing a bowel motions and what a poonami and overflow is with the doctors
  35. Can flick a vomit bad open on one movement of the wrist
  36. Just like camping… Use a cup if you forgot the bowl; a spoon makes an ok fork if you can’t find one
  37. As with everywhere.. Build a relationship with the receptionist and cleaner, they are valuable people to know

This is the start of my #HospitalHack series of posts, over the coming weeks/months I hope to share how I’ve made our hospital admissions a little more bearable.