Sarah & Josh (POG family)

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I was reading about Leptomeningeal disease on the Cleveland Clinic site a few days ago. The prognosis of one month after diagnosis without treatment and up to 6 mos with treatment seems to be the norm.

I think it's been at least a month since the first trip to the ER where they saw the fluid in brain.
 
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Josh said they are going to do radiation this morning. He really is clueless. I don't think they have a strong relationship with their medical team like Jenny does. Sarah needs comfort measures & not further treatment, testing, etc. Very troubling.
 
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I felt very much the same way, I also don't have the impression he had any greedy or purposeful intent, I don't think he saw it the way some of us did. I could be wrong. Again, a dissonance between vloggers and viewers and each of our respective armchair positions. I can see how someone who is praised for sharing their journey openly might not think this crossed any lines whilst many of us felt there was a more nuanced and discerning assessment to be had.

I also had the impression that he's not aware of the gravity or sharp decline in such a short period. Which seems odd given the very dire prognosis they were just given. Why oh why did they leave it so late for her to make legacy messages? If there is anything to be a takeaway for the viewers, write your loved ones messages early on and get them out of the way as well as all financial and testate matters.

I am not sure I'll watch any more, I also felt it too personal and private a time for Sarah, I don't feel comfortable being a spectator of this. I barely watched this and mostly listened. I know I've just made a post regarding Jenny, about wanting to know more info, how they're feeling, what's going on, etc. But, this example was very different. This was certainly not what I meant or wanted with regards to cancer vloggers.
Josh posted a written blog soon after the startling video. He said he was contacting the oncologist and requesting Sarah’s date of treatment be moved up.

The drs know how fast the cancer is moving so I can’t understand why their was no interim care before the 10th. The wait until the 10th for treatment is unconscionable. However, if that must be, the drs can’t just leave her alone until then. I have a sick feeling Sarah is leaving us soon. 😢
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Josh said they are going to do radiation this morning. He really is clueless. I don't think they have a strong relationship with their medical team like Jenny does. Sarah needs comfort measures & not further treatment, testing, etc. Very troubling.
Sarah has been with her oncology team for 6 years (?) and her and Josh praise them. Josh said they are like family. Perhaps they put too much faith in their team. This is so sad.

When Sarah went off treatment the Pog family knew it was a risk and a risk worth taking. However, as Josh said per a response to a comment, the doctors were surprised about how fast the cancer moved. I can’t understand why the doctors not know this. Also, didn’t we all feel Sarah’s migraines were cancer related? I don’t understand why the Pog family did not immediately consider (perhaps they did, but not on camera) that or why the drs were not contacted.
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Josh posted a written blog soon after the startling video. He said he was contacting the oncologist and requesting Sarah’s date of treatment be moved up.

The drs know how fast the cancer is moving so I can’t understand why their was no interim care before the 10th. The wait until the 10th for treatment is unconscionable. However, if that must be, the drs can’t just leave her alone until then. I have a sick feeling Sarah is leaving us soon. 😢
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Sarah has been with her oncology team for 6 years (?) and her and Josh praise them. Josh said they are like family. Perhaps they put too much faith in their team. This is so sad.

When Sarah went off treatment the Pog family knew it was a risk and a risk worth taking. However, as Josh said per a response to a comment, the doctors were surprised about how fast the cancer moved. I can’t understand why the doctors did not know this. Also, didn’t we all feel Sarah’s migraines were cancer related? I don’t understand why the Pog family did not immediately consider (perhaps they did, but not on camera) that or why the drs were not contacted.
 
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Josh said they are going to do radiation this morning. He really is clueless. I don't think they have a strong relationship with their medical team like Jenny does. Sarah needs comfort measures & not further treatment, testing, etc. Very troubling.
Palliative radiation is considered comfort measure though.
 
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Josh said they are going to do radiation this morning. He really is clueless. I don't think they have a strong relationship with their medical team like Jenny does. Sarah needs comfort measures & not further treatment, testing, etc. Very troubling.
Josh said significant swelling in the brain has led to bleeding. The drs are administering steroids to reduce the swelling.

I love the POG family. I feel angry and want to shake everyone. This should not be Sarah’s time. So so very heartbreaking and sad. 😢❤
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Josh said they are going to do radiation this morning. He really is clueless. I don't think they have a strong relationship with their medical team like Jenny does. Sarah needs comfort measures & not further treatment, testing, etc. Very troubling.
Sarah has been with her oncology team for 6 years (?) and her and Josh praise them. Josh said they are like family. Perhaps they put too much faith in their team. This is so sad.

When Sarah went off treatment the Pog family knew it was a risk and a risk worth taking. However, as Josh said per a response to a comment, the doctors were surprised about how fast the cancer moved. I can’t understand why the doctors not know this. Also, didn’t we all feel Sarah’s migraines were cancer related? I don’t understand why the Pog family did not immediately consider (perhaps they did, but not on camera) that or why the drs were not contacted.
 
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I don't think Sarah will be going home, which is so sad. There will always be that question about stopping treatment, but maybe this cancer is just too aggressive and nothing would have stopped its progression. You never know when you time has come, a friend (younger than me and not unwell) just did not wake up one morning last week. Which way is better? I just don't know. I hope they can keep Sarah comfortable for however long she has left.
 
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I feel so sad for all of them. This rapid decline in Sarah’s health must be both devastating and shocking to them. They will be shell shocked.

If Sarah has indeed entered the end of life stage, as seems likely, perhaps the kindest thing for her would be for her to now be unaware of what is happening.

I hope she has peace for her remaining time, however long that is.
 
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The medical systems are broken. I think that every seriously I’ll person should have a hired (or volunteer!) nurse navigator that can coordinate and advocate for them. In this instance, someone like that who could have been by their side from day 1 would have been able to see what the doctors not offering treatment meant and could have helped them transition to hospice. I am just so sorry for everyone. Those who work in the system too. Gosh, we really do need saving, don’t we. Praise G-d that He sent Jesus to save us from ourselves. Believe in Him and receive the promise of an unending life with no sorrow or pain or tears. 🙏🏻
 
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I did see Josh posted a few moments ago Sarah is still fighting, no update until his children wake up.
 
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I found the last post so very sad. I'm certain what he needs to talk to the kids about is that she doesn't have much longer. What a horrible, horrible thing for those kids and for him.

I hope Sarah goes peacefully and that Josh and the kids get to be with her. They seem like such a nice loving family.
 
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I found the last post so very sad. I'm certain what he needs to talk to the kids about is that she doesn't have much longer. What a horrible, horrible thing for those kids and for him.

I hope Sarah goes peacefully and that Josh and the kids get to be with her. They seem like such a nice loving family.
I do think the next update will be the worst news. Like yourself I hope she goes peacefuly.
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Josh said significant swelling in the brain has led to bleeding. The drs are administering steroids to reduce the swelling.

I love the POG family. I feel angry and want to shake everyone. This should not be Sarah’s time. So so very heartbreaking and sad. 😢❤
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Sarah has been with her oncology team for 6 years (?) and her and Josh praise them. Josh said they are like family. Perhaps they put too much faith in their team. This is so sad.

When Sarah went off treatment the Pog family knew it was a risk and a risk worth taking. However, as Josh said per a response to a comment, the doctors were surprised about how fast the cancer moved. I can’t understand why the doctors not know this. Also, didn’t we all feel Sarah’s migraines were cancer related? I don’t understand why the Pog family did not immediately consider (perhaps they did, but not on camera) that or why the drs were not contacted.
I do think Josh sometimes seems more interested in filming Sarah than getting her medical help. He carried on filming her answering questions when she was clearly having a seizure and was distressed. Why didn't he call a doctor?
 
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I do think the next update will be the worst news. Like yourself I hope she goes peacefuly.
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I do think Josh sometimes seems more interested in filming Sarah than getting her medical help. He carried on filming her answering questions when she was clearly having a seizure and was distressed. Why didn't he call a doctor?
I do wish he had stopped filming especially since that might be the last video of Sarah but he said in a previous video that the doctor said if she had another seizure that they were to wait an hour and if she was still not out of it then they were to go to the hospital.

I think the aphasia was most likely always evident the last couple days but it was just more pronounced in that video. I think the seizure part was the vacant look on her face and the disorientation.
 
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I do wish he had stopped filming especially since that might be the last video of Sarah but he said in a previous video that the doctor said if she had another seizure that they were to wait an hour and if she was still not out of it then they were to go to the hospital.

I think the aphasia was most likely always evident the last couple days but it was just more pronounced in that video. I think the seizure part was the vacant look on her face and the disorientation.
I didn't realise that but I wish he'd stopped filming too.
 
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If Josh had or hadn't filmed, it would have made no difference to any outcome. Sarah was already likely having a brain bleed. Makes no difference.
 
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If Josh had or hadn't filmed, it would have made no difference to any outcome. Sarah was already likely having a brain bleed. Makes no difference.
He didn't know that at the time and would have been better comforting her, she was clearly distressed, than shoving a camera in her face!
 
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I do think the next update will be the worst news. Like yourself I hope she goes peacefuly.
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I do think Josh sometimes seems more interested in filming Sarah than getting her medical help. He carried on filming her answering questions when she was clearly having a seizure and was distressed. Why didn't he call a doctor?
Because the agreed protocol with the hospital was to wait an hour to see whether it resolved.
Josh was just doing what they had both previously agreed.

Obviously, she started to have an episode soon after he started to video. No one could tell it would turn into a brain bleed, but they followed protocol and she was taken to hospital.
 
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Because the agreed protocol with the hospital was to wait an hour to see whether it resolved.
Josh was just doing what they had both previously agreed.

Obviously, she started to have an episode soon after he started to video. No one could tell it would turn into a brain bleed, but they followed protocol and she was taken to hospital.
Yes, it is the 'protocol'. Sometimes tapering too quickly can cause inflammation to ramp up and cause a bleed. I understand that Ipilumbab & Nivolumab (the trial immunotherapy my husband was on which got him to NED for several months) does require no steroid use. Both treatments rev up the immune system, whilst steroids supress. Sarah had to be off steroids for treatment to have any chance of working. However, tapering too quickly can have detrimental effects. Its an absolute horrible horrible situation, and sadly it did play out on camera. Josh's mind will be all over the place and he will live wondering. My hope is that he never ever blames himself, ever.
 
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It seems like at least a couple of hours passed between the filming of that video and her next seizure. I only know about seizures in dogs so don't know the progression from the seemingly mild episode we witnessed to a full on brain bleed.

I hope that she has a little calm and peaceful time between them and wasn't in fear and distress during those 4+ hours.
 
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