Guest Blogger; Kano; Magical memories amongst hard days

The 11th May was my last update after we had secured access to Osimertinib (Tagrisso) with the assistance of Professor Ben Solomon from Peter Mac. 

On the 14th May, we met Assoc Professor Gary Richardson, who indicated that without a significant response to Tagrisso, Cassy would have ~1 month to live. 

Telling our children that prognosis was the hardest thing we have ever done, it shocked and shattered them, they cried uncontrollably. It was just terrible, you actually hurt in your chest. We just held them. Cassy, as always, remained defiant and was so strong. 

16th May we did an early birthday celebration for Kiara and went to LEGO Discovery Centre at Chadstone. We had an amazing time, topping out with Kiara getting the ‘Disney’ Castle as her 7th Birthday gift. She was so excited!!! We had Mexican at Fonda... to which Harper created her Parody “lightning and the Fonda” which we’ve been hearing ever since! 

We remained hopeful and Cassy commenced the Tagrisso, however, pain was again an issue and there were an increasing frequency of inconsistency in wellness. Bouts of nausea and coma have impacted my beloved lioness. This would also inhibit Cassy taking the Osimertinib, at times, as it’s only available in tablet form. 

During this time Cassy started working on a video journal with Wayne, also. Wayne has been amazing spending the time to get this done, Cassy really wanted to do it, especially for the girls. Wayne just kept fitting in and it certainly cannot be easy. 

On the 27th May, Cassy had rallied and we had Mk2 of Harper’s 5th Birthday at Wayne and Fleur’s which was an incredible day. The sun was shining and everyone dressed up in their best Barbie and Ken outfits to make the day really special. We are so grateful for Wayne and Fleur and all the family and friends who made the day possible! Such precious time and memories 🙏😘❤️

31st May, Cassy and I celebrated 14 years of being a couple, with a surprise lunch I organised for her at Woodland House, formerly Jacques Reymond, where we spent our first “official” date, all those years ago. It was an amazing afternoon reminiscing about the amazing life we’ve shared and made together, lots of laughs, projects, amazing holidays and our 3 little blessings. 🙏🍾🧀🍰🍷❤️😍😘

I could not stop telling Cassy how much I love her, how lucky I was to find the one for me, to share this journey and still be so in love. It’s been a privilege to be by her side, though it will never be for long enough, especially when you want forever! I remember watching The Notebook, with Cassy. The ending is amazing, how true love should end, where you don’t spend a day apart, one not left to contemplate life without the other.  

I was lucky to get this time with her, as Cassy was very nauseous on the 30th May and 1st June, which were days planned for the girls, which was heartbreaking for her. 

On the 6th June, we had a 7th Birthday party at Cabrini for Kiara, which was a small bash, but magical for us to celebrate it with Cassy. Kiara was so excited to receive her second major LEGO project, the Taj Mahal! We had amazing Greek food from Lemnos.

The girls had a sleepover, Cassy wasn’t well the next day to get the extra time with kids she so dearly wanted, just hanging out with her most precious little angels 👼🏽 

The slab also got poured for our house today. The house project is something that is bittersweet for me, I am happy for the progress, I know Cassy wants it done so we have a great place to live, but it’s our project, we worked together for this, towards this. I so badly wanted her to open the front door when it’s done.

On 7th June, that Thursday evening our long time friend and osteopath Timothy Taylor came by the hospital and gave Cass a treatment. It was great catching up again and he provided Cass with some relief in her neck which has been troubling her of late. 

Cassy’s bouts of illness on top of everything else have really inhibited her mobility and exercise, Tim was encouraging her to do short daily walks if possible. It was a quiet evening and Cassy was very tired. We parted that night, I always hate leaving. This is the last night we spoke to each other face to face. 

Cassy is being impacted by the brain metastasis and long term use of dexamethasone (steroids), used to control swelling, pain and circulation of central nervous system fluids. We also noticed that when consuming pain medication orally she seemed to getting increased nausea. She has been through so much, just never getting a break.

8th - 10th June, Cassy was exhausted and sick on the Friday and fell back into a sleep state, we departed that day so Tahlia could do her YABC classes as she prepares for her first concert on 16th June. Tahlia loves this. Kiara and I had developed colds on the Friday night, sadly forcing us to stay away from hospital. 

9th June, Kayla came to our place and we took the girls to BOUNCE Inc. as a treat for them from the team at Bauer Media. So nice of them to want the girls to have some fun. Kayla the sweet heart brought Kiara a belated birthday cake and then we met up with Shiv’s and had dinner with Wayne and Fleur. We had a Burger night, was nice just hanging out, but I was glad to be feeling better so I could get back to the hospital to see my babe on Sunday. 

10th - 11th Sunday and Monday we spent as much time as we could, however, Kiara worsened and could not come in. Cassy had still not woken up and we spoke to the  doctors to try and increase the dexamethasone to rouse Cassy, this was increased. 

12th June, Cassy seemed to be more responsive after the higher doses of dexamethasone but the medical team ceased this approach as Cassy was now hyper-sensitive and could not be moved by the nurses or treated effectively for her general care. 

13th June, I only learned of the change regarding the reduction in dexamethasone    on Tuesday after speaking to Assoc Professor Natasha Michaels. This did not feel right to me after I got off the phone, the dexamethasone is the drug needed to wake Cassy up! 

On Tuesday afternoon I arrived at the hospital and conveyed my concerns to the family and Cassy’s favourite nurse Sky, about the lower doses and that it did not align to the family’s wishes of an opportunity for Cassy to be awake with us. Natasha met with us in the evening to justify her decisions. I can see her point, but given where we are, I’m less adverse to the risk of higher doses. Wayne was going to contact the medical director at Cabrini. 

14th June, Today is one month to the day that we met with Assoc Professor Gary Richardson, who indicated that Cassy would have ~1 month to live. I have never really taken much notice of these prognostic predictions, Cassy was always going to run her own race, but today is a little different, it resonated with me. She’ll be here tomorrow.

The past 24 hours have been extremely confronting. My heart is breaking and my family is being ripped apart. I’m not ready to lose my babe, my soulmate. 💔💔💔

Nana Lovey also visited today and it was extremely distressing for her, very sad, she kept telling Cassy to look at her, I just went into the bathroom and wept.

I spoke to our girls and explained the situation to them today. I just sat there holding them, trying to console them. It is so unfair on them. They are so young, so innocent, so undeserving of this.

Wayne escalated the reduction in dexamethasone today to one of the medical directors of Cabrini. He attended tonight and met Glen and I. They seem to understand our point of view, but don’t regard it in Cassy’s best interests. 

Cassy has been peaceful today, not appearing in discomfort and has been responsive to touch and voices. We massaged her gorgeous feminine hands,  tiny feet and moisturised her skin. Her mum has been doing her makeup. She is surrounded by her family and so much love. I am so grateful for the amazing family and deep love for Cassy they hold for her. So grateful for their love, care and support of our gorgeous children and their support of me. I love you all so much!

🙏❤️🙏❤️🙏❤️

We continue to receive so much love and support from our family and friends. We are truly blessed to have you. Your words, wishes and deeds are always in our hearts and minds. 🙏❤️