I'm sure what they are being told & what Josh is "hearing" are two different things. I can't imagine any oncologist, neurologist or critical care MD suggesting transfer to another hospital in Sarah's very dire situation. Josh is probably pushing for it as a second opinion.
Sarah & Josh (POG family)
- Thread starter Saydee
- Start date
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I'm sure what they are being told & what Josh is "hearing" are two different things. I can't imagine any oncologist, neurologist or critical care MD suggesting transfer to another hospital in Sarah's very dire situation. Josh is probably pushing for it as a second opinion.
sally anne
Member
Update: josh is going ahead with radiation therapy. I feel very sad about this. I guess I’m not in their situation but I feel like it’s not best to do radiation in her condition.
If an oncologist didn't feel it would bring any benefit then they simply would not offer it.
Oh yes they sure would if the family was pushing for it. In the US many Oncologists & other physicians are less than honest with end of life matters. I've seen it over & over. We refer to it as "futile care".
TryingMyBest
Chatty Member
I somehow doubt cheapass Kaiser would approve anything that wasn't beneficial no matter how much a family wanted it.
Wow I am actually shocked. I suppose here in the UK, the NHS simply don't have surplus budgets to continue with care if it offers no benefit.
I hope Sarah gets benefit from WBR. I only know of a couple of patients that opted for WBR and the side effects were quite something else. Terrible.
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It is very sad. Sometimes people don't survive the transport.
There are some variables in Sarah's case Im not aware of. Is she transferring to a same-system hospital that shares a Tax ID? If so, insurance is only paying one payment for both hospitals & the hospitals will share the payment. Or, is she at a little rural hospital & any life-prolonging treatments are outside their scope of practice? Then, insurance would pay for a "higher level of care" transfer. Or, is her main care team at the other hospital? The most likely scenario is she is emergently transferring & administration or insurance aren't involved in the decision & will deal with it on the backend.
Saydee, we have a very complex & fragmented healthcare system in the US.
TryingMyBest
Chatty Member
She has a Kaiser hospital within 15 miles from her home. You would think that's the one she went to but they are a big enough place to do WBR.
I'm am sadly very familiar with all sorts of healthcare administrative crap having been in the biz for a bajillion years and having 2 totally unrelated cancer ordeals in the last 9 years.
After having to advocate for myself at every turn I don't know how less well informed patients and family survive the incompetency and just basic bullshit.
helpmeunderstand?
Active member
Truer words have not been spoken.
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Feeling for Josh and family after watching the latest update. Wish there was more we could do to help….
will keep 
Bassethoundmama
Active member
Josh posted an short video update. So he said they'll transport her to a radiation clinic daily. They're going to begin this tomorrow. But according to Josh Sarah wants this.
TryingMyBest
Chatty Member
At least it's just for 3 days to start. I know the usual duration is more like 2 weeks. Hopefully she will show progress in the first 3 days because taking her back and forth for 2 weeks in her current condition does sound like torture.
Marchonegypt
Well-known member
I don't know how things work in the US. Won't they just move her to the other hospital and she stay there? The idea of her moving every day is awful.
What an awful situation. It highlights how quickly things can worsen. My friend with Breast cancer moved straight to hospice by choice when her cancer moved to her brain. Her husband and boys were there with her virtually 24 hrs a day and I'm told she was able to enjoy some precious time with her babies and was kept very comfortable.
I hate the thought of someone's remaining time on earth being filled with being shunted around in this way, but maybe they had this conversation as to how far she wanted treatment to go. I'm not convinced because he seems unsure. It must be so hard because she still looked healthy the last we saw of her and not like someone who is close to death.
Urgh I really hate that so many young people are dealing with this sort of situation
I hate the thought of someone's remaining time on earth being filled with being shunted around in this way, but maybe they had this conversation as to how far she wanted treatment to go. I'm not convinced because he seems unsure. It must be so hard because she still looked healthy the last we saw of her and not like someone who is close to death.
Urgh I really hate that so many young people are dealing with this sort of situation
WBR can help with symptoms, decrease swelling which in turn decreases the need for steroids. The doctor apparently told Josh that it can cause damage, but cognitive damage was unlikely.
I know of 2 patients that opted for WBR when stereotactic radiation wasn't an option, both suffered cognitive damage
In fact, their end of life was truly horrendous.Patients have to do what feels right for them, but if I ever find myself in that position then there is no way I will ever have WBR. Frying my entire brain with radiation? No. Never.
Probably not already offered due to how invasive it really is. If steroids alone could have managed swelling then it is a whole lot kinder.
It sounds as though it’s a radiology clinic, rather than an actual hospital with inpatient services.
Josh is struggling with accepting EOL. He refers to it as "scary conversations". They never appeared to have a Navigator or social worker to provide guidance & support.
He noted hair loss as a side effect which is the very last thing to be concerned about right now. I agree, Saydee - this could be horrendous. And transporting her to an outpatient clinic & back. At least they should know in a few days if the WBR is beneficial.
He noted hair loss as a side effect which is the very last thing to be concerned about right now. I agree, Saydee - this could be horrendous. And transporting her to an outpatient clinic & back. At least they should know in a few days if the WBR is beneficial.
WBR can help with symptoms, decrease swelling which in turn decreases the need for steroids. The doctor apparently told Josh that it can cause damage, but cognitive damage was unlikely.
I know of 2 patients that opted for WBR when stereotactic radiation wasn't an option, both suffered cognitive damage
Patients have to do what feels right for them, but if I ever find myself in that position then there is no way I will ever have WBR. Frying my entire brain with radiation? No. Never.
Probably not already offered due to how invasive it really is. If steroids alone could have managed swelling then it is a whole lot kinder.
This is reminding me of Emily Hayward and her WBR. She did seem to have cognitive side effects from it, though it probably bought her a little more time. I miss Emily, though I didn’t even know about her channel until after she was gone. Aisha was such a good partner for her too. Melanoma always seems so aggressive.
Marchonegypt
Well-known member
What an awful situation. It highlights how quickly things can worsen. My friend with Breast cancer moved straight to hospice by choice when her cancer moved to her brain. Her husband and boys were there with her virtually 24 hrs a day and I'm told she was able to enjoy some precious time with her babies and was kept very comfortable.
I hate the thought of someone's remaining time on earth being filled with being shunted around in this way, but maybe they had this conversation as to how far she wanted treatment to go. I'm not convinced because he seems unsure. It must be so hard because she still looked healthy the last we saw of her and not like someone who is close to death.
Urgh I really hate that so many young people are dealing with this sort of situation
If she survives and the damage may already be done.
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Aisha was and is amazing. She lives her life for both of them.
TryingMyBest
Chatty Member
Josh just posted a photo of Sarah at the radiology clinic and she looks remarkably well. Hope this treatment gives her more quality time with her kids.