Hi family and friends…
I’m so sorry for the long hiatus. It was good to ignore this blog for a few years.
While things have been going on in tumour world, we haven’t been very public about it. Stefan has been working, and now we have teenagers, so life has been busy and, for a while, things were relatively stable.
Unfortunately, we are now at a stage where a return to work looks very unlikely for Stefan, and we are needing the support and love of our family and friends.
Just over a year ago, we were told that Stefan’s tumour was growing at a pace where it was time to take action. He started on a low dose of temozolomide in the fall—the same chemotherapy he had in 2020.
After six months, though, it became evident that the temozolomide wasn’t being effective. In June, Stefan moved on to a new chemotherapy, lomustine.
June was a very busy month for us. We were moving Stefan’s mother from the Sunshine Coast, but Stefan insisted on finishing the school year. I had convinced him to take a trip to England to see family, and in an effort to make that happen, we decided he would go with our son, Nathan, just the two of them, to help keep the costs down.
We had noticed that Stefan wasn’t quite himself in early July. At the time, we chalked it up to the new chemotherapy and the busyness of June.
During their trip in England, though, Stefan had a significant cognitive decline, which was incredibly scary. Thankfully, Nathan managed to get them home safely, and Stefan was started on steroids right away.
After three days on steroids, Stefan returned to normal.
He doesn’t remember much from that time. He had significant difficulty with his memory and finding words, and he was extremely low energy.
We now affectionately—and somewhat grimly—call that version of him “England Trip Stefan.”
In speaking with the oncology team, there was agreement that these symptoms likely meant tumour progression. He was fast-tracked for another MRI, which he had on August 6th.
Yesterday, we met with both the oncologist and the neurosurgeon.
The scan showed evidence of changes that explained the cognitive changes we’d been seeing. The original tumour has continued to grow slowly. In addition, there is a new cyst, and this cyst has been growing much faster.
The walls of the cyst are tumour, and it is filled with fluid. The fluid can expand much more quickly than the tumour itself, which means the cyst can cause problems relatively quickly.
Unfortunately, the cyst is in an area where there are more limitations on what can safely be done.
Both doctors agreed that the next step isn’t black and white.
One option is surgery. If we decide not to do surgery, that isn’t necessarily a decision we can change later. Essentially, it’s now or never. This would be Stefan's last surgery.
The neurosurgeon believes they could remove some of the original tumour. They wouldn’t be able to remove the cyst itself, but they could potentially drain it, possibly placing a drain that would allow it to be drained again in the future.
The surgery would also provide an opportunity to have a personalized oncogenomics study done on the tumour. This could potentially give us more information to help guide future treatment decisions.
But there are some very significant risks.
Because of where the tumour is, surgery carries an increased risk of speech and memory loss. In other words, there is a risk that Stefan could permanently become “England Trip Stefan.”
And even if the surgery goes well, it wouldn’t remove the part of the tumour that is currently behaving the worst. It might leave us with less tumour and some additional information that could help with treatment planning—but it might not.
The doctors also don’t have much confidence that the personalized oncogenomics testing would actually lead to additional treatment options.
Whether Stefan has surgery or not, there are two additional chemotherapy options available. Unfortunately, we were told that they don’t think either is likely to work particularly well.
We’ve also been told in the past that further radiation wasn’t an option because of the amount of radiation Stefan has already received. Yesterday, however, we were told that in select patients, radiation can sometimes be used again, and that it would be worth having another discussion about whether Stefan might be one of those patients.
When I summarized everything back to the neurosurgeon, the gist of it was:
“So we can do surgery, with the risk that Stefan could be like ‘England Trip Stefan’ afterward, and get a chance at some additional information that might help with treatment—but probably won’t extend his life by much…
Or we don’t do surgery, and either way, there is a risk that ‘England Trip Stefan’ eventually returns as the tumour continues to grow…
And there really aren’t any other treatment options that look particularly promising.”
All in all, it sucks.
Stefan is leaning toward surgery. At least it gives us something to hope for, and I think we need that right now.
Once we give the confirmation, the surgery will likely happen within 2–3 weeks.
So, that’s where we are.
We don’t know exactly what the next few weeks, months, or years will look like. We don’t know what the surgery will accomplish, or what options might come afterward.
But we do know that we are going to need our people.
We know that everyone is going to have questions, and we are happy to share what we can. If you have questions, please feel free to email me at taleen.lageston@gmail.com. I may not have all the answers, but I will do my best to keep everyone updated here.
We also know that many of you will have ideas, suggestions, stories about treatments that have worked for someone you know, or recommendations for things we should try. We truly appreciate that these suggestions come from a place of love. However, at this point, we would really ask that you refrain from offering treatment suggestions or medical advise. We are working closely with Stefan's oncology and neurosurgery teams, and we need to be able to focus our energy on the decisions in front of us.
What we need most right now is your love, support, encouragement, and understanding.
Please send love, prayers, positive thoughts, healing energy—whatever you believe in—our way.
We appreciate every bit of it. 💗
