It’s been a very eventful month in our household. Apologies for the long delay in getting this post up.
Ethan finished his radiation treatment on Christmas Eve. That round of 8 daily radiation sessions hardly phased Ethan at all, it just made him tired. We made the daily trip into the radiation unit at the hospital and rarely had to wait more than a few minutes for him to be able to go in to the room to get his treatment.
He was very good at lying extremely still and he would tell us that he wouldn’t even blink while the machine was on. We’d all go into the room and help him up onto the machine. The staff would usually let him have the controller and make the bed zoom up and down. He would lay on a specially molded pad which had been set to his body shape, so that he would be in exactly the same position every day for treatment. With an allowable error rate of less than 3mm, it’s a very precise!
When the treatment starts we leave the room and can see him on a video screen and can talk to him through a microphone. The huge machine moves completely around his body and at one stage a section of the floor lowers so the machine can move around properly.
Jerusha described in the last post how after his operation the doctors had advised us that the large tumour had good histology, whereas the smaller tumour had less favourable histology. Because of the less favourable histology and that some cancer had spread the lungs it meant that the treatment protocol could be different. Our oncologist advised us that it may mean several much stronger chemo drugs in addition to his previous concoctions.
But at the same time, the much smaller tumour had the less favourable histology, not the larger one, so it seemed to make more sense for the spreading to have come from the large tumour. But how would we really know? And in cases of uncertainty they advised that they’d prefer to err on the side of caution. We weren’t keen at all on him having to have stronger chemo considering how well he’d responded to the previous chemo treatments and that it was now only mopping up any stray cells in the body. But we obviously had to listen to the wisdom of the doctors. Our fervent hope the whole time was that Ethan would receive the treatments he needed and that the doctors would be impressed to make the right decisions – this ended up happening but in a way we weren’t expecting.
They were very thorough and got in contact with the head of the global study on Wilms Tumour in the US to find out which protocol to follow. After some back and forth communication the Americans requested slices of everything they took out to do further pathology tests. Our Oncologist told us the pathologist doing the tests was ‘the big kahuna of pathology for Wilms Tumours.’ The Australian pathology teams had done their job and had followed the protocol exactly and no traces of cancer had been found to have spread through the lymph nodes. However when the Americans took several more slices of tissue they discovered one minute trace of kidney in one of the lymph nodes.
The result of this finding was that Ethan needed another round of radiation in the New Year, this time to the lower flank on one side of his body. Had they known earlier they could have done these treatments at the same time pre Christmas. So we had another 7 daily trips to the hospital to visit our friends in the radiation team. Seriously – Han, Verity and their team were wonderful people and become our friends!
Although daily appointments at between 7 am and 7.30 am each day wasn’t originally on our plans, we were very grateful and considered it an answer to prayer that this leading pathologist had for some reason kept looking and looking. Without discovering what they did a relapse down the track may have been more likely. And they also decided that he doesn’t need the extra strength chemos, just the three he has been having. This time round the radiation upset his tummy. After vomiting all over my car on the way home the first day we learned to give him the anti nausea medicine before we left for the hospital each morning.
Chemo is actually very light at the moment and it’s been fantastic! After radiation there is one of the drugs that can’t be taken for a while. And they also have to lower one of the other doses because his eyesight had been quite negatively effected last year, as well as making him go cross eyed. So he had one half dose of one drug a couple of weeks ago and that is the only chemo he has had in about two months (we have had the operation and two rounds of radiation in that time). The results without chemo have been great – Ethan’s hair has started growing back…it’s still very short but it’s clearly blonde, much lighter coloured than before he lost it! He’s started getting the colour back in his face (no longer as “white as a ghost” as Deano would say), he’s putting on weight (no longer as “skinny as a cheesestick”) and his eyes are working much better again. It’s the healthiest he has looked and felt in months.
This period of our lives was destined to be one that has challenged us in a range of ways. We know that through the challenges come growth and an opportunity to find out as a family what we’re made of. To add to the complexity at the moment, another interesting thing occurred, which has kept us incredibly busy over the past 6 weeks – we decided to sell our house. But that’s a story for another time! We’ll post again soon we promise.
Paul says
Love hearing that Ethan is getting stronger, starkbehaerter, and that the doctors have been inspired. You are all an inspiration to us. Thanks for the update.
Luke says
Paul, I am impressed that you found a way to use the word starkbehaert. And I’ve only ever heard you describe yourself as that!