Support resources for families dealing with cancer and other serious illnesses

Hi there,
Thanks to vividsailor7 for the guidance! I’m going to try my best to track down all the pathology reports as soon as they come in—hopefully, I'll have some news tomorrow.
Just to give you a heads-up, it took about 18 full days for the results from the first surgery to actually arrive, and as for the second one—the most recent one—they don't even have those results yet, or at least nothing had shown up by this past Monday. I'll double-check everything and let you know. My first priority is to hunt down the discharge papers.

For context, the first surgery was performed by Dr. Shoapy, while the second one was handled by Associate Dr. Dimanovski; both procedures took place over at Mercy Hospital in NYC.

Thanks everyone, I'll check back in with you all very soon!

Angela Wright said:Please try to keep it that way—make sure he gets all the palliative care he needs right at home. Dad is actually entitled to home health nursing services. You should head over to his primary care physician and put in the request. With a diagnosis like his, he qualifies for daily visits—about 45 minutes each session. It means his wife can handle things like bathing and changing him. I really, truly recommend this because it will take such a massive weight off your shoulders. Also, if you can, look into getting a hydraulic hospital bed and an air mattress with a compressor to prevent pressure sores. Various medical supply companies, both public and private, usually have those beds in stock and rent them out for about $133 a month. It’s my sincere advice; it will make life so much easier for both him and for you.

Thanks, but I honestly think we'll be heading back to the hospital again soon. He's been vomiting constantly and has started becoming disoriented—or rather, he just seems lost, doesn't know what he's doing... the doctor already warned us that this is how it's going to go.😢

Bilirubin is at 167!!!! We’re completely lost here—should we head straight to the hospital?? We just got the lab results back 😢

Hannah James76 said:Bilirubin is at 167!!!! He doesn't know anything anymore, should we go to the hospital?? We just got the results back 😢

It’s obvious his liver is slowly shutting down, and unfortunately, a bilirubin level that high leaves lasting damage on the brain. 😢 Your dad is fading out, and the end is very close—I am so incredibly sorry to be the one to tell you this. 😢 You might hate me for saying it, but based on my own experience, my advice is to let him stay here with you until the very end. Make the most of this time; make sure he’s comfortable, tell him how much you love him, reassure him that everything is okay and that things will be fine. That is what he needs most right now... You can call 911 and see if there is anything else they can do to ease his discomfort, but honestly, I don't think the hospital will actually help much. All you'll do is separate him from his family and force him to spend his final moments somewhere feeling like a stranger.
I am so, so sorry. Hang in there, everyone.

Angela Wright said:It looks like the liver is slowly shutting down—and unfortunately, such high levels of Bilirubin tend to leave lasting damage on the brain. 😢 Your dad is fading, and the end is very close; it breaks my heart to be the one to tell you this. 😢 You might even resent me for saying it, but if I can offer any advice from my own experience, it would be to let him stay right there with you until the very end. Cherish that time—make sure he’s comfortable, tell him how much he means to you, reassure him that everything is okay and that all will be well... he needs to hear those things more than anything right now. You could always call 911 to see if there is anything else they can do to ease his discomfort, but honestly? I suspect the hospital won't be able to provide much meaningful help at this stage. All it really does is pull him away from his family, leaving him to face his final moments in a sterile room feeling like a stranger.
I am just so, so sorry. Please, hang in there.

Thank you... I could never hate you for this. You all have helped me so much.

vividsailor7 said:Honestly, I don't know the doctor's name, but from what I can gather, it looks like he's dealing with some blood clotting issues.
To offer any real insight, I'd need to see actual diagnoses and lab results.

Hi everyone,
I finally managed to get some of the test results back today, along with the discharge papers, so I was wondering if someone might be willing to help me make sense of them all.
Everything is uploaded at this link—I really hope it works and that the quality is clear enough to read, since I had to spend all day begging them to fax everything over before I could go through the hassle of converting it all into a JPEG.

http://www.mypicx.com/11112011/TATA_DOKUMENTI/

Thanks so much in advance for the help.

Karen Brown said:Hey everyone,
I finally got some of my test results back today—specifically the discharge papers—and I was hoping someone could help me make sense of them.
Everything is at this link; I hope it works and that you can read it clearly. I had to practically beg them today just to get everything faxed over, then I had to go through the whole headache of converting it all into a JPEG.

http://www.mypicx.com/11112011/TATA_DOKUMENTI/

Thanks in advance to everyone.

As the reports state, there is: progression of that bleeding, anemia, though the coagulation levels look normal.
Basically, the hematology treatment needs to continue, and they might need to perform surgery to stop the bleeding.
P.S. Here’s a breakdown of the diagnoses:
Cardiac insufficiency, GERD, Hiatus hernia, Chronic gastritis—this means the cardia (the entrance to the stomach) isn't functioning right, which led to the hiatus hernia, reflux (where stomach acid and bile back up into the esophagus), and chronic inflammation of the stomach lining.
C92.1—Chronic myeloid leukemia, currently in remission.
C74.1—Adrenal gland tumor.
T81.0—Post-operative bleeding involving the left kidney and extending into the retroperitoneum (the space behind the abdominal cavity).
D62—Anemia following blood loss.
If anything else is unclear or if you need more info, please, just ask.

vividsailor7 said:As the test results show, there is ongoing bleeding and anemia, though the coagulation levels look normal.
So, the next step is to continue with hematological therapy, or perhaps undergo surgery to control the bleeding.
PS. Diagnosis breakdown:
Cardia insufficiency, GERD, Hiatus hernia, chronic gastritis—basically, the entrance to the stomach isn't working right, which caused a hiatus hernia, leading to reflux (where stomach acid and bile back up into the esophagus) and chronic inflammation of the stomach lining.
C92.1—Chronic myeloid leukemia in remission.
C74.1—Adrenal gland tumor.
T81.0—Post-operative bleeding from the left kidney, extending into the retroperitoneum (the space behind the abdominal cavity).
D62—Anemia following blood loss.
If anything else is unclear or if you need more info, please feel free to ask.

Thanks for breaking that down,
Things are just getting harder by the day. I found out today that they’ve identified some kind of new illness that nobody seems to fully understand yet. Apparently, this condition developed following the surgery to remove his kidney.
He’s fighting hard and staying sharp for now, but the illness is taking its toll every single day.
Once I get all the medical paperwork in hand, I’ll post a link so you guys can take a look. Maybe we can save someone's life or at least offer some help.
I talked to my mom about requesting an autopsy, but she won't even hear of it. She says he went through so much already and she doesn't want anyone else to have to suffer or learn lessons from his pain. Personally, I really want the autopsy done so we can know exactly what this disease is.

Regardless of what the family wants, will the hospital still perform an autopsy if they suspect it's something entirely new?
Where would I even go to find out?
I’m mostly thinking about my own children; I want us to know exactly what he was battling.
I'm feeling pretty lost right now—am I thinking about this the right way?

Best to everyone,

Karen Brown said:Thanks for clearing that up,
Things are just going downhill from here. I found out today that they've declared some kind of new illness that nobody really understands yet. Apparently, this condition cropped up after his kidney removal surgery.
He’s fighting for now and staying sharp, but the disease takes its toll every single day.
Once I get all the paperwork, I'll post a link so you guys can take a look. Maybe we can save someone's life or at least offer some help.
I talked to my mom about arranging an autopsy, but she won't even hear of it. She says he’s suffered enough and she doesn't want anyone using him as a learning tool. Personally, I want the autopsy done so we know exactly what we're dealing with.

If the family refuses, will they still perform one since it's supposedly something new?
Where would I even find out?
I'm thinking about my kids and the future—I want us to know exactly what he was suffering from.
I'm at my wit's end here; am I thinking about this the right way?

Best to everyone,

Karen Brown, it honestly sickens me that you and your family are debating the ethics of an autopsy for a man who is still breathing!😲
I don't get this whole argument about doing it for the sake of your children knowing the truth, or this "humanitarian" angle, while on the flip side, you're essentially placing a living person on an autopsy table. Right now, he needs your love and your undivided attention. If he is indeed in a terminal phase and there's nothing more to be done medically, your job is to make his final days easier. This isn't the time or the way to handle this. To be blunt, reading about this in a space where people come seeking hope and fight for every precious second of life is frankly disgusting. There.

Your father is critically ill and facing multiple heavy diagnoses, each one of which could independently be responsible for what's happening to him. A single malignant diagnosis is a systemic cellular breakdown, not to mention that his current state could be a direct consequence of the treatments themselves. In that sense, your dad isn't some medical mystery waiting for a Dr. House episode like you're making him out to be; he is a seriously ill patient dealing with a mountain of diagnoses and symptoms. Searching for one "true" cause is like trying to find one specific drop of water in the ocean—it's a needle in a haystack, whether it matters for life or death or not.

Angela Wright said:Karen Brown, I am honestly revolted by the fact that you and your family are debating the merits of an autopsy for someone who is still very much alive!😲
I just can't wrap my head around this argument about doing it for the sake of your children knowing what happened—this supposed "humane" angle—when you've already essentially laid a living person out on an autopsy table. Right now, he needs your love and your undivided attention; if he is indeed in a terminal phase and there’s nothing more to be done medically, your job is to make his final days easier. This isn't the time or the way to handle this, and frankly, reading about it here—in a place where people come looking for hope and are fighting for every single precious second of life—is just gut-wrenching. There.

Your father is incredibly ill with multiple serious diagnoses, each one potentially contributing to what is happening to him right now. Even a single malignant diagnosis means a cellular-level disruption throughout the entire body, not to mention that his current state could be a side effect of the treatments themselves. In that sense, your dad isn't some complex medical puzzle for Dr. House to solve like you're portraying him; he is a seriously ill man dealing with a mountain of diagnoses and symptoms. Trying to pin down one single "true" cause is like trying to find one specific drop of water in the ocean—whether it's a matter of life or death, it's nearly impossible.

I completely understand why everyone reacted the way they did.
My apologies for any comments that came across as distasteful!
I was speaking specifically about my father, who is still fighting despite everything that lies ahead.
EVERY SINGLE DAY, HIS MOTHER VISITS FOR THE HALF HOUR THEY ALLOW HER!
Personally, I've been there many times myself, and we've had wonderful talks, just encouraging him and staying strong together.

With my previous questions, I was just trying to figure out what went wrong because I have this nagging doubt that something happened that shouldn't have. He went in for a standard adrenal gland surgery; prior to that, he was perfectly healthy, regardless of his past medical history.
I'm grasping at any bit of information I can find regarding the case because I'm a complete layman when it comes to medicine. By profession, I'm a technician, so I naturally want to understand the "why" and the "how"—I just want an explanation.
Once again, my apologies to everyone.

Best regards, and thank you for all your help.

@Karen Brown/">@@Karen Brown I believe this isn't easy for you. Even though your father is still with us, it certainly isn't simple. But we have to talk about these things. While you still have the chance, why not ask him? What does he think about all of this? After all, it's his life.

@Angela Wright/">@@Angela Wright, I understand why you're reacting this way. But honestly, I don't think any of us can feel even a fraction of the weight that Karen Brown and her family are carrying right now. In our society, these topics are unfortunately still hard to face. Perhaps because of the environment I grew up in, I find it perfectly fine to speak openly about these matters. Isn't it better to be honest than to go behind someone's back? Nothing is ever a certainty—we shouldn't doubt that—but if a man is truly looking out for his children (which is only natural), then I believe even his own father would accept something like this.

@Hannah James76/">@@Hannah James76 and everyone else: I am truly sorry for what you are going through. I wish you nothing but the best of luck. Please, stay strong in your fight against this cruel disease.

I honestly don't know what else we can do to help Dad... He’s vomiting constantly now, and the pain started setting in too. We called emergency services yesterday, but they didn't want to send anyone—apparently, because of the nature of this illness, they just wouldn't come. We had to call a second time before they actually showed up; his blood pressure was down at 85/50, so they gave him some Ketonal and then just left... It didn't make a difference, so he ended up going to Mercy Hospital... His Bilirubin is at 241 😢. He really should be staying in the ICU, but he’s adamant about being back home... The doctors told us he only has a few days left—that he'll either just drift off to sleep or slip into a coma. Does anyone know how I can help stop him from vomiting so much??

Hannah James76 said:I’m at my wit's end trying to figure out how to help Dad... He’s vomiting constantly, and the pain has started setting in too. We called emergency services yesterday, but they refused to send anyone because apparently, "that's just how this disease works." We had to call a second time to get them to show up. His blood pressure was 85/50; they just gave him some Ketonal and left... He didn't feel any better, so he ended up going to St. Jude's... his Bilirubin is at 241 😢. He should be in the ICU, but he insists on being at home... They told us he only has a few days left and that he might just drift off to sleep or slip into a coma. How can I help stop this constant vomiting??

Your dad needs an IV drip. Call his primary care physician and demand that they actually do their job. A sedative might also be necessary to get that vomiting under control. Honestly, Ketonal isn't nearly enough for this kind of pain—he needs Durogesic patches. You need a doctor to give you actual guidance on what steps to take next.

Angela Wright said:Dad really needs an IV infusion. You should call his primary care physician and insist they actually do their job. A sedative might also be necessary to help get that vomiting under control. Honestly, Ketonal isn't nearly enough for the pain—he likely needs those Durogesic patches instead. A doctor needs to step up and guide you through these next steps.

His doctor is an absolute DISASTER 🙂. She just keeps handing him whatever was listed in the hospital discharge papers... everyone seems to just shrug and say there's nothing more they can do 😠. I've never even heard of those patches before
.

Hannah James76 said:His doctor is an absolute DISASTER 🙂. She’s just repeating whatever they wrote in the hospital report... everyone is basically saying there’s nothing more they can do 😠. I’ve never even heard of those patches

Get in touch with
19 Drašković Street, New York City
Chicago Pain Clinic
Zoran Lončar, MD, Anesthesiology Specialist
01/46 97 000

Tell them you’re calling with a warm recommendation for Dr. Lončar from the New Day Association. He’s a dear colleague of ours fighting for palliative care here in America. Explain the situation—that your dad is in the terminal stage and is suffering, and that nobody seems willing to provide him with adequate relief. The doctor will be able to write a prescription for the patches.
Do this immediately!
If you can't get through to anyone, send me a PM and I’ll hunt down a cell number for you.

Reach out here too:
Dr. Kotnik will come for a home visit along with a nurse to assess how else they can help and to offer some solid advice. I highly recommend her. She was a lifeline for both me and Fighter Girl during our darkest hours.
As far as pain management goes, it has to be by prescription, unfortunately, because we're dealing with opiates.

Angela Wright said:Get in touch with
19 Drašković Street, New York City
Chicago Pain Clinic
Zoran Lončar, MD, Anesthesiology Specialist
01/46 97 000

Tell them you are contacting them because you received a warm recommendation for Dr. Lončar from the New Day Association. He is such a dear colleague in our shared fight for palliative care here in America. Explain the situation—that your dad is in the terminal phase and is suffering from pain, and that no one seems willing to provide him with the adequate help he needs. The doctor will be able to provide a prescription for those patches.
Do this immediately!
If nobody responds, send me a PM and I will try to track down a mobile number for you.

Also, reach out here:
Dr. Kotnik will come for a home visit along with a nurse to assess how else they can support you and offer some solid advice. She has my highest recommendation—she was an absolute lifeline for both me and Fighter during our hardest moments.
But regarding the pain management itself, everything has to go through a prescription, unfortunately, since we are dealing with opioids.

THANK YOU so much! Now she'll be called...

Hannah James76 said:Her doctor is an absolute DISASTER 🙂. She’s just repeating exactly what they wrote in the hospital report... everyone is basically saying there's nothing more they can do 😠. I've never even heard of those patches
.

Angela Wright explained everything perfectly, and I’m right there with her regarding the patches. I’d also add that he could be given Reglan, and if that doesn't work, then try Setronon.

vividsailor7 said:Angela Wright explained everything perfectly—I’m right there with her regarding the Zofran—but I’d also add that Reglan might be an option. If he doesn't respond to that, then maybe try Setronon.

He's taking Reglan, but it just isn't doing the trick... Thanks for all the help.

Hannah James76 said:Taking Reglan but it isn't doing anything... Thanks for the help.

Did you guys manage to figure it out?

Dad isn't responding anymore—it’s not just a little hiccup or a stutter... he's just silent. ;( ;( ;(