Guest Blogger; Kano

MakeUp & Meds - Guest Blogger Kano

11th May, 2018

Hi Everyone, 

Its been a while since Cassy posted, many of you know she’s had a very tough time since her last blog, 9th April, before my 40th Birthday. 

If you are on Facebook or Instagram, you will know that Cassy made sure I had the most memorable 40th birthday ever. It’s something that I will treasure for my entire life, the lengths my beautiful wife went to were extraordinary for someone in good health, let alone for someone with Stage IV Lung Cancer, with extensive metastasis, including leptomeningeal disease. I was blown away by Cassy’s effort and it was just amazing spending time again, with the one I love. I am truly blessed to have shared my life with this incredible woman. 

Cassy’s battle has recently focussed on pain management before my 40th birthday and continued post, when she returned to Cabrini, this time Prahan, Palliative Care, commencing Monday 23rd April. 

Her meds were changed and the primary drug was switched to methadone with a Abstral and Ordine to be used for break through pain. Her response to these drugs was initially exceptional and she surprised the team at Cabrini, us and her friends who had visited her. She was moving so well also. The staff were calling it ‘methadone magic’. Cassy managed to be discharged on Friday 27th April, 2-3 days ahead of schedule. Cass had been eating well, sleeping better and was in much less pain.

This was significant as we had a small get together planned for Harper on Sunday 29th April, as Harper turned 5 on the 30th April. I was so excited to have her coming home, she was tired, but really excited to be coming to her girls and especially for Harper’s Birthday. In the car I just keep reaching over to touch her, squeezing her hand, resting my hand on her arm or leg. 

When we got home she was determined to get Harper’s cake going, so she got the mixture in the tin, then in the oven, said she was exhausted and went to bed. I said I’d check the cake etc, so Cassy could get the rest she deserved and needed. 

Prior to Cassy being discharged on the Friday I spoke to the Palliative Care staff to discuss what I should be on the watch for with the new medication. I was advised symptoms of toxicity would be:

• nausea
• extreme fatigue
• confusion

Shortly after Cass had settled for the night she woke up feeling sick. This continued and worsened over the weekend, I could believe what was happening in front of my eyes. I continued to make preparations for Harper, however I was worried, I called Cabrini and they said to just try and get a little water or ice into Cass. All my baby wanted to do was sleep, she missed Tahlia’s netball game, which she really wanted to go to on the Saturday and did not get out of bed unless she was being sick. I was waiting for her guidance on strategic placement of decorations, but it just didn’t happen. 

Sunday morning arrived and I was really anxious, Cassy was very ill, I called Cabrini and they said they would send an ambulance. At this time we all thought she may have reached toxicity from the methadone. 

Cassy was readmitted and was not conscious, they began her on high doses of fluids and started flushing her system. At this stage she remained unconscious 

Monday 30th April was Harper’s Birthday. Mum (Hazel), Tahlia, Kiara and I spent the day with our gorgeous little doll Harper to give her a special day. If you know Cassy, she always makes the girls birthday’s special, so I did my best to make sure Harper had an awesome day. 

After 24 hours there was no change and she was extremely agitated when being handled by staff or when being touched. She was screaming at minor needles or dressing changed, which is certainly not the woman I know who doesn’t flinch at needle that have sadly become routine.

Based on Cassy’s progress, Dr Natasha Michaels and her team believed there was ‘cerebral issues’ and commenced her on extremely high doses of dexamethasone which is used to control swelling / fluid build up in the brain. On the Tuesday it was discussed with Wayne, Dad and I what our options could be. We advised there was only one option, we keep fighting. After around 24 hours Cassy started to ‘wake’ a little. Cass started to say a few words and I even got a kiss on Tuesday! The target was to get Cassy stable so we could get her to Cabrini Malvern for a brain MRI, so we could see what is happening. 

It was now Wednesday, The girls had not seen their Mummy since Sunday and I had to go and speak with them to prepare them that Mummy would probably be sleeping and to very gentle and quiet with her. It was amazing when they entered the room that Cass woke when she heard their voices and snuggled and kissed them. From this pint Cass really rallied and began to stabilise, becoming less hypersensitive, started eating again and we were getting our old Cass back!!!

We progressed into the weekend and levelled off well. Things were stable and I decided things were ok for Tahlia to go on her grade 5 camp on Monday 7th May. 

Natasha arranged for Cassy to have the scan on Monday 7th May and the procedure went ok, including the transport to and from Malvern. It was agreed that the family would be together on Tuesday to discuss the radiographer’s report with the medical team. 

We were advised by the team that the MRI was not favourable and much of the Leptomeningeal Disease that appeared to be gone ~1 month ago was present again. We were told the current line of therapy had failed. 

Shocking to hear, but Cass was resolute, she and I just wanted to speak to Ian Porter, Cassy’s radio-oncologist and Gary Richardson, her clinical oncologist. 

Ian called and advised he’d come by on Wednesday around lunchtime, Gary was on leave, but we worked out to book an appointment with him on Monday 14th May, to discuss the road ahead.

Natasha visited Cassy on Wednesday morning and asked if we wanted to get in contact with Prof Ben Solomon at Peter Mac. I was very keen to have this discussion. Ben was very supportive when we met him earlier in the year and discussed the efficacy of Osimertinib (Tagrisso) for LM disease. Ben advised Natasha he’d visit Cassy on Friday 11th May. We are so grateful and I trust him. 

I also reached to Assoc Prof Thomas John from the Olivia Newton John Cancer Centre to update him with the situation and see if he could offer some guidance. Thomas John is a kind and compassionate man, responding with views on the best line, again suggesting we look at Osimertinib as an option. Thank you Thomas for taking the time, we appreciate it. 

Ian visited us and provided his view on the situation, recommending that he cannot deliver a benefit with any additional radiation on Cassy’s brain. Ian has a way of communicating, Cassy adores him and I’m very fond of him too. He is a kind man with a tone of voice and demeanour that suggests he’s never raised his voice in his life or been angry at anyone. You feel calm in his presence, a soft skill that is a significant asset in his line of work. 

We await our next lot of meetings, hold onto our hope and will never give up. 

In all of this, the love and support we continue to receive is amazing, from the kids being looked after, our family and friends visiting, the many messages and texts, it all just adds to our strength and allows us to keep up the fight. 

To my beautiful wife, I love you, the girls love you, your family and friends love you. Everybody loves you! You light up our world! 

Keep fighting for us, we’ll keep fighting with you. Everyone is roaring with you. 

#lions