Brooke – “ We sort of hover-crafted home and I thought, I need to get control here. It just wasn’t part of the equation that it wasn’t going to happen for us. I found this great contact in Sydney who ended up being best friends with Dr Charlie Teo’s daughter. She set us up with an appointment so we flew to Sydney. Charlie said, ‘It’s not looking good. It’s kind of like trying to close the gate after the horses have bolted but there’s always something we can try.’ We were like, book it in.
The company I worked for did a Gofundme so Joel had the surgery 2 weeks later with Dr Teo. Within that period Joel proposed to me which was beautiful. We went to Sydney for the operation and Joel woke up with similar side effects to Joel North, paralysis down the left side and obviously a bit rattled by it all. We had to do everything from scratch…. learn how to do every day things again. The brain is so incredible. It definitely can repair itself and heal. It just takes patience and support and lots of wifey therapy. We got married 6 months later and Joel walked down the aisle. He has a cane but he’s walking.
….And then Peachy popped out. She’s just on 7 months now. She came and everything in our world has just been amazing. Right before it, when we found out Joel was going to do chemo we were with Joels Dad in an appointment and I remember the chat. We talked about freezing Joels sperm and his Dad said ‘I suggest you do it today.’ He was like ‘Right now, let’s make you an appointment.’ We froze Joels sperm but after the dust settled we got his sperm tested and it was perfectly fine and then this beautiful, gentle little force entered our world. She looks a lot like Joel. She’s really calm but also strong which is good. She’ll hold her own in life.
Two weeks ago everything was fine and now it’s turned upside down again. I went food shopping, all was fine. There was no me watching Joel. It was just a normal day. We were told after surgery by Charlie Teo that Joel probably wouldn’t have seizures any more but unfortunately where the tumour was cut out and is still sitting, he will always have seizures. It’s getting that perfect mix of seizure meds just to keep them under control somewhat. There are people out there who have 30 seizures a day so to have one every now and then….. Lack of sleep, stress, things like that can make them worse. I came home from my food shop and Peachy was crying in her chair. I was knocking on the door, no answer. I thought, maybe Joel’s out the back but I knew he wouldn’t leave Peachy in her chair. I came in and he was non responsive on the bed. I stirred him around and eventually he came around but he was a bit different. Usually after a seizure he can sit up, talk to me and everything is ok. This time was different. I called my Mum who lives around the corner ’Can you come get Peachy and tell me if I’m tripping here or not?’ She raced over, looked and said ‘Go now!’
We went to Byron Hospital and we were transferred to Tweed where they did an MRI. The MRI showed that the tumour had returned. He had already had his 6 monthly scan which was clear so they must have missed it. We are now dealing with a multitude of things. I said to Joel this morning…We kind of need to live in naive land a bit, head in the sand, because I feel like it’s too emotional driven. We can’t make decisions based on this kind of emotion. We need to have our heads straight. We kind of have to sit through this emotion, deal with it and get to the point where we can say…Ok I’m strong now, let’s be factual.
The surgery option now is very high risk. We had a zoom meeting with Charlie Teo on Monday due to Covid. It was good that we didn’t have to go to Sydney. You know he can operate, anyone can operate but Joel could end up in a wheelchair. It’s about quality of life really. We also have an amazing team in Melbourne who do radiation and chemo. We’ve contacted them and Joel’s Dad is good friends with the head of Oncology in Auckland, NZ. We sent the scans to him as well and everyone has said..Look, maybe surgery not right now. If there’s no other option, then yes, surgery but at this point of time surgery is probably not preferred just because of the risk. We have to wait another week for Professor Kate Drummond who works out of Melbourne to confer with other people. She is amazing. We have a good mindset with her and we trust her and our gut feeling sits right with her. She said ‘I can do surgery and I can make it look like there is no tumour. I can keep going till the tumour is out but it’s just a matter of quality of life for Joel.’
We are at the point where it’s been 8 years since Joel last had radiation. He can have it again. They like to wait 10 years but they will do it at 8. At this point we need to get through these next few days. We are doing a Gofundme because at the time we were 100% going to do Charlie Teo but we still have to do treatments, whether we go with surgery now or do radiation and chemo then surgery, or radiation, chemo, then there’s a magnetic therapy which costs about 6k. We just have to decide.
With Covid and all that is happening in the world we thought we didn’t want to do anything with raising funds. We know that everyone is struggling. It’s pretty strange times right now. When we did the last Gofundme it wasn’t just about the money, it was the connection with people and the messages of support that we got that really, really changed the way we viewed a lot of things in life. If that happens again and we get that back it makes such a difference. Even just a message or a gesture of love. We connected with old friends we hadn’t heard from in so long. That was so beautiful and it’s really important to us. It makes Joel feel really loved. The thing is with brain cancer is you can feel very alone. It’s such an intense thing to go through. It affects so many as well so it’s so lovely to open those doors of connection, opening up messages and opening up inboxes to that connection again.
What is unbelievable is the last story you did with Joel and Anita. We met at an Oncology appointment. My Joel and Anita’s Joel are both 33, Anita and I were both pregnant though I was 2 weeks behind. Both Joels had the same brain tumour and had been operated on by Charlie Teo. Both Joels had the same paralysis on the same side. Incredibly Anita and I had our babies on the same day. We haven’t found out yet about our own birthdates but we must do that. It’s so bizarre but we have made lifelong friends. Maybe we should just all move in together now. Either way we have a girl and they have a boy so we can marry them off (laughs).”
The company I worked for did a Gofundme so Joel had the surgery 2 weeks later with Dr Teo. Within that period Joel proposed to me which was beautiful. We went to Sydney for the operation and Joel woke up with similar side effects to Joel North, paralysis down the left side and obviously a bit rattled by it all. We had to do everything from scratch…. learn how to do every day things again. The brain is so incredible. It definitely can repair itself and heal. It just takes patience and support and lots of wifey therapy. We got married 6 months later and Joel walked down the aisle. He has a cane but he’s walking.
….And then Peachy popped out. She’s just on 7 months now. She came and everything in our world has just been amazing. Right before it, when we found out Joel was going to do chemo we were with Joels Dad in an appointment and I remember the chat. We talked about freezing Joels sperm and his Dad said ‘I suggest you do it today.’ He was like ‘Right now, let’s make you an appointment.’ We froze Joels sperm but after the dust settled we got his sperm tested and it was perfectly fine and then this beautiful, gentle little force entered our world. She looks a lot like Joel. She’s really calm but also strong which is good. She’ll hold her own in life.
Two weeks ago everything was fine and now it’s turned upside down again. I went food shopping, all was fine. There was no me watching Joel. It was just a normal day. We were told after surgery by Charlie Teo that Joel probably wouldn’t have seizures any more but unfortunately where the tumour was cut out and is still sitting, he will always have seizures. It’s getting that perfect mix of seizure meds just to keep them under control somewhat. There are people out there who have 30 seizures a day so to have one every now and then….. Lack of sleep, stress, things like that can make them worse. I came home from my food shop and Peachy was crying in her chair. I was knocking on the door, no answer. I thought, maybe Joel’s out the back but I knew he wouldn’t leave Peachy in her chair. I came in and he was non responsive on the bed. I stirred him around and eventually he came around but he was a bit different. Usually after a seizure he can sit up, talk to me and everything is ok. This time was different. I called my Mum who lives around the corner ’Can you come get Peachy and tell me if I’m tripping here or not?’ She raced over, looked and said ‘Go now!’
We went to Byron Hospital and we were transferred to Tweed where they did an MRI. The MRI showed that the tumour had returned. He had already had his 6 monthly scan which was clear so they must have missed it. We are now dealing with a multitude of things. I said to Joel this morning…We kind of need to live in naive land a bit, head in the sand, because I feel like it’s too emotional driven. We can’t make decisions based on this kind of emotion. We need to have our heads straight. We kind of have to sit through this emotion, deal with it and get to the point where we can say…Ok I’m strong now, let’s be factual.
The surgery option now is very high risk. We had a zoom meeting with Charlie Teo on Monday due to Covid. It was good that we didn’t have to go to Sydney. You know he can operate, anyone can operate but Joel could end up in a wheelchair. It’s about quality of life really. We also have an amazing team in Melbourne who do radiation and chemo. We’ve contacted them and Joel’s Dad is good friends with the head of Oncology in Auckland, NZ. We sent the scans to him as well and everyone has said..Look, maybe surgery not right now. If there’s no other option, then yes, surgery but at this point of time surgery is probably not preferred just because of the risk. We have to wait another week for Professor Kate Drummond who works out of Melbourne to confer with other people. She is amazing. We have a good mindset with her and we trust her and our gut feeling sits right with her. She said ‘I can do surgery and I can make it look like there is no tumour. I can keep going till the tumour is out but it’s just a matter of quality of life for Joel.’
We are at the point where it’s been 8 years since Joel last had radiation. He can have it again. They like to wait 10 years but they will do it at 8. At this point we need to get through these next few days. We are doing a Gofundme because at the time we were 100% going to do Charlie Teo but we still have to do treatments, whether we go with surgery now or do radiation and chemo then surgery, or radiation, chemo, then there’s a magnetic therapy which costs about 6k. We just have to decide.
With Covid and all that is happening in the world we thought we didn’t want to do anything with raising funds. We know that everyone is struggling. It’s pretty strange times right now. When we did the last Gofundme it wasn’t just about the money, it was the connection with people and the messages of support that we got that really, really changed the way we viewed a lot of things in life. If that happens again and we get that back it makes such a difference. Even just a message or a gesture of love. We connected with old friends we hadn’t heard from in so long. That was so beautiful and it’s really important to us. It makes Joel feel really loved. The thing is with brain cancer is you can feel very alone. It’s such an intense thing to go through. It affects so many as well so it’s so lovely to open those doors of connection, opening up messages and opening up inboxes to that connection again.
What is unbelievable is the last story you did with Joel and Anita. We met at an Oncology appointment. My Joel and Anita’s Joel are both 33, Anita and I were both pregnant though I was 2 weeks behind. Both Joels had the same brain tumour and had been operated on by Charlie Teo. Both Joels had the same paralysis on the same side. Incredibly Anita and I had our babies on the same day. We haven’t found out yet about our own birthdates but we must do that. It’s so bizarre but we have made lifelong friends. Maybe we should just all move in together now. Either way we have a girl and they have a boy so we can marry them off (laughs).”