2023 Adventures

The past six months have been, as usual, pretty wild in the Johnson household. Barbie doll tea-parties, arts and craft, princess dress-up parties, tantrums, and food-fights have been a part of the daily routine. But enough about Chris, let’s update you on Kirby and the girls.  

The most important thing is this: right now Kirby is doing well and enjoying time with the family.

After we last wrote in April, Kirby started on an IV chemotherapy called ‘CAV’ (Doxorubicin/Cyclophosphamide and Vincristine). For the first few months, this looked like it was working, but eventually the cancer progressed. She had also reached her maximum lifetime dose of this type of chemotherapy so she had to cease it regardless. The cumulative impact from the drug on her heart was so much that the risk of heart failure was greater than the risk of the cancer itself. 

During these months, the oncologist continued to look into options for immunotherapy and ultimately she recommended a trial of a double agent immunotherapy called ‘ippi/nova’.

A quick side-note on our epic holidays and social-life:

In the cooler months, we had quite a few visitors to Townsville and - notwithstanding Kirby’s ongoing treatment - we were able to do some amazing holidays together. We really appreciated the help around the house too. Keets and Chan came to visit in May while Chris was off pretending to do important things in Canberra (spoiler-alert… Chris did precisely zero important work while in Canberra). Chris’s Dad, Don, came to visit a few weeks later and was immediately put to work helping upgrade our back patio. Deb came up in June and we spent some time together in a cabin at Rollingstone. We had a lovely visit from Noah and his girlfriend Delta in July. Then we got to spend some time with Julie who offered to look after the girls while we did a trip to the Whitsundays. Our friends from the United States, Barrett and Erin, flew over from Texas to spend two weeks with us. We were also joined by Al and Lisa (friends from Singleton) and Bec and Lachie (our legend next door neighbours). We stayed for a few nights in a mansion by the water (straight out of a ‘Flo Rida’ music video), then we did a few days on a power yacht around the Whitsunday Islands. Although the weather was much colder than expected, it was an amazing trip packed-full of hilarious memories and good times. 

Anna and then Robbo and Wayne came to visit while Chris was, yet again, racking up his frequent flyer miles on a trip to Canberra. In the September school holidays, Chris reneged on his promise never to go camping again and we all went to Rollingstone campground for a week. Thankfully this time the tent didn’t get blown away. After that, Kirby and Scarlett did a trip to Tasmania and then Nyla got her own frequent flyer miles up with a trip to Tasmania by herself. Nic and Kath Holton came up for a visit more recently and we took them to beautiful Rollingstone again for the weekend. Milly visited a few weeks ago followed by Deb who came up to celebrate Kirby’s birthday with her. Most recently we had a lovely visit by the Watson family. It's been fantastic seeing everyone.

… maybe we should start an Air BnB.

And now let’s get back to the cancer treatment update:

Kirby had been waiting to start the immunotherapy for months but unfortunately she developed pneumonitis (which was likely a side-effect of previous treatments), so we had to wait for this to improve. In August, finally she got the all-clear in her lungs so she started immunotherapy and we hoped for the best. 

The side-effects were immediate and brutal; fevers. rashes, vomiting, raised inflammatory markers in bloods, chest pains, and shortness of breath, as well as a return of the dreaded pneumonitis. It was a pretty rough time. Some of the worst of it happened during one of Chris’s impeccably-timed work trips to Canberra, but thankfully Anna was visiting so she got a crash-course in nursing for her holiday. It was lovely for Kirby to have the extra help around the house and spend time with everyone. 

Unfortunately, the only way to get all the side-effects under control was for Kirby to go back on high-dose steroids. Steroids do the exact opposite of immunotherapy, so they basically canceled each other out. The oncologist was concerned that continuing on immunotherapy was too high a risk and could be fatal, so we made the decision not to continue. This was also based on some scans that showed significant disease progression while on immunotherapy.

We were all disappointed that immunotherapy couldn’t continue, but it was the right decision to make. In September Kirby started a new treatment, a chemotherapy tablet called ‘CAPTEM’. We were super-concerned that this wouldn’t help, if the IV drugs weren’t working what could a tablet possibly do? But, she was so exhausted at that point that her body needed a rest from all the IV drugs. On the bright side, the tablets could be taken at home and didn’t seem as strong with fewer side effects than previous IV chemotherapies. This meant less trips to the cancer center, more opportunities to travel (last minute Tassie trip) and more time with family!  

After two months of the new treatment, Kirby underwent some further testing and, for the first time in many months we received some good news: the cancer had shrunk significantly. We’re not exactly sure if it was the CAPTEM tablets or the immunotherapy that did it, but regardless - something has worked. We really hope it is the CAPTEM tablets and have our fingers crossed for the next scan. Although this is exceptionally good news for us all, we know that this won’t actually cure the cancer… but it will delay Kirby’s decline in health. The oncologist said that the next round of tests will be at the end of January, so we have some breathing room. 

Editor’s note: It seems the only thing growing in our household this November is Chris’s hideous majestic moustache for Movember (https://au.movember.com/mospace/983282 get around it).

Kirby’s Christmas wish was to relax with family over summer without tests and changes to the treatment plan, and so far it looks like her wish will be coming true. In mid-December, we’re surprising Nyla and Scarlett with a Disney cruise off the east coast which should be fantastic. After having Christmas at home, we’re planning on coming to Sydney and attending Day 3 of the cricket for the ‘Pink Test’ on 5th Jan, so we’re hoping to see everyone there again (fingers crossed for sunshine on the day). We’re booking somewhere in Section 2 of the Brewongle Stand (please note this is a different stand to last year). Chris will send something out with more details via Facebook soon.  After our time in Sydney, we might get down to Tasmania for a week or so. 

Chris has been given a two-year posting (2024-25) with the Army which allows him to continue working remotely. This is fabulous news because it means we won’t have to move. He will be the Director of the Army’s Professional Military Education team. For any nerds out there, here’s the website: www.cove.army.gov.au. Although the job still involves a bit of travel, he can continue to focus on our family and take leave when required. 

We’re wishing everyone an amazing Christmas holiday and we hope to see everyone soon. As always, we really want to say thank you for the love and support of our family and friends. Even though we live thousands of kilometers away from most of you… it feels like you’re right behind us. 

Every setback is an opportunity.