Thanks so much for the emails, phone calls and blog comments. I'm sorry to be using this format to update those of you that have left messages - please understand that right now it's easier for me to type than talk. By Tuesday, Dallas’s face and neck had swollen up a lot more so we went to the ER at Royal Jubilee Hospital and spent 7 hours there (what a gong show). The ER doc had never seen anyone with Dallas's symptoms, so she phoned his surgeon who ordered another CT scan – even though he’d just had one the previous week (there's a reason I call him Glow Boy!) and also a chest x-ray. When the surgeon had time to see Dallas he was stumped too - he actually went out of the room to refer to the CT scan three different times while he was assessing Dallas! The only thing he thought it might be is an infection so Dallas is on some strong antibiotics. We saw the surgeon again this morning and he thinks that the antibiotics are working. I would say that the swelling on Dallas’s face has decreased a bit and he’s having an easier time talking so I think they’re helping too.
Yesterday we saw the oncologist to come up with a new treatment plan which is:
1. We’ve applied again to get herceptin – the chemo drug we wanted in the first place. It’s a long shot that the BC Cancer Agency will approve it but we’re hopeful. If they don’t approve it there are a couple of other avenues to follow, one being that we pay for it ourselves. No matter what happens we’re going to get that stuff soon.
2. They are going to address Dallas’s bone cancer which has spread from his neck to his back, hips, and femur. They’ll give him a bone building drug by I.V. which should keep the bones stronger and alleviate some of the bone pain he’s been experiencing. The drug will also help to prevent fractures which are a high risk with bone cancer.
3. They’re registering Dallas for Palliative Care. This one felt like a knife through my heart but there are reasons for it. If you’re in this program your bone building drugs are paid for. There is also the benefit of being sent to the front of the line if you need to go to the ER for anything. Their goal is to keep Dallas comfortable and ensure that he’s seen by the right physician quickly.
There was a discussion about what kind of medical care Dallas wants to receive. There is no cure for adenocarcinoma so the oncologist wanted to know what Dallas’s treatment goals were. Dallas doesn’t want every type of chemo thrown at him just because there may be a chance it will help – especially since this means he’d feel sick and weak most of the time. He wants to try the herceptin and then be kept as comfortable as he can be for the rest of his life. He still wants to spend lots of time doing things with Marcus and Jordan, he wants to go fishing and have fun with friends and family. He wants to be able to do the things he loves rather than be hooked up to an IV all the time feeling awful. So that’s the plan. Next week we have an appointment with another oncologist whose specialty is pain management and we also have a follow up appointment with our oncologist to see how our application for herceptin is going. The Big Guy is handling all of this very well (much better than me!) and still strongly believes that there’s a cure out there on some horizon so he’s going to keep fighting like hell for as long as he can. More later...
Love, Patty
Yesterday we saw the oncologist to come up with a new treatment plan which is:
1. We’ve applied again to get herceptin – the chemo drug we wanted in the first place. It’s a long shot that the BC Cancer Agency will approve it but we’re hopeful. If they don’t approve it there are a couple of other avenues to follow, one being that we pay for it ourselves. No matter what happens we’re going to get that stuff soon.
2. They are going to address Dallas’s bone cancer which has spread from his neck to his back, hips, and femur. They’ll give him a bone building drug by I.V. which should keep the bones stronger and alleviate some of the bone pain he’s been experiencing. The drug will also help to prevent fractures which are a high risk with bone cancer.
3. They’re registering Dallas for Palliative Care. This one felt like a knife through my heart but there are reasons for it. If you’re in this program your bone building drugs are paid for. There is also the benefit of being sent to the front of the line if you need to go to the ER for anything. Their goal is to keep Dallas comfortable and ensure that he’s seen by the right physician quickly.
There was a discussion about what kind of medical care Dallas wants to receive. There is no cure for adenocarcinoma so the oncologist wanted to know what Dallas’s treatment goals were. Dallas doesn’t want every type of chemo thrown at him just because there may be a chance it will help – especially since this means he’d feel sick and weak most of the time. He wants to try the herceptin and then be kept as comfortable as he can be for the rest of his life. He still wants to spend lots of time doing things with Marcus and Jordan, he wants to go fishing and have fun with friends and family. He wants to be able to do the things he loves rather than be hooked up to an IV all the time feeling awful. So that’s the plan. Next week we have an appointment with another oncologist whose specialty is pain management and we also have a follow up appointment with our oncologist to see how our application for herceptin is going. The Big Guy is handling all of this very well (much better than me!) and still strongly believes that there’s a cure out there on some horizon so he’s going to keep fighting like hell for as long as he can. More later...
Love, Patty
4 comments:
Hello Dallas and Patty,
Do you think there is any merit in a phone-in campaign to try and convince BC Health and/or whomever that Herceptin should be more readily available? I have no idea how these things work. We both are surely thinking of you, supporting your prayers, and just wishing there was more we could do. Dallas, you are an incredibly strong man and possess such a positive attitude all embraced by a loving family and so many friends who are constantly thinking of you. Keep pushing!
Love J & J
Hi guys,
Bill and I would be totally supportive of any campaign to get BCCCA to reconsider its narrow policies. We remain in awe of your courage and determination - this is what improvements are made of. As ever, we're holding you close in our thoughts. We're hoping to also see you very soon - we're due for a dose of the "west coast." Take special care. Love, Ev & Bill (xxoo)
Thinking of you and sending many prayers your way.
Jeanne & Pearl
Hey We will try to update more in the next few days but the last week has dealt us with more swelling that is causing some different problems. Thanks again
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