Resources and support for families dealing with cancer and serious illness

slyseal28 said:Look, sarcomas are primarily treated with chemo, and Iscadora isn't a chemotherapy drug. My guess is that Iscadora is more of a supportive therapy you take alongside the main treatment. Sarcomas—specifically osteosarcoma—are among the most common cancers seen in kids. It's probably the most well-known type out there.

Nowadays, doctors have gotten pretty good at treating them. That said, some types are just way more aggressive and tend to flare back up, which seems to be what’s happening with this little girl.

You’ve got to realize that sarcomas love to spread to the lungs. If you're dealing with an aggressive strain, you really have to follow every single thing the doctors recommend. No doctor is going to suggest an amputation just for the hell of it. I hope you guys get where I'm coming from.

Dr. Shante is a phenomenal physician and a true expert. Please, just sit down and talk to him, listen to what he has to say... no matter how gut-wrenching the decision might feel...

Apparently, her specific type doesn't spread as much, but it's still a pretty nasty, aggressive sarcoma (at least based on my amateur reading of the medical reports...).
Basically, the doctors in Washington, D.C. don't want to continue with the current therapies anymore, and they aren't even considering another surgery unless it's an amputation. Instead, they've referred them to a clinic in Vienna, hoping they can operate on the affected knee and actually save the leg. As it stands, the sarcoma is starting to break through the skin near the knee... and honestly, the whole situation is just horrific. It’s a massive mental toll—it’s devastating both inside the house and out there—but when you see the tumor actually protruding like that, it just knocks the wind out of you...

jadetinker42 said:Supposedly this specific type doesn't metastasize, but even so, from what I've managed to gather by reading through the reports—layman style, mind you—we’re dealing with a pretty aggressive kind of sarcoma.
Basically, here in Washington, D.C., they don't want to push forward with more therapies, and a repeat surgery isn't even on the table unless we're talking about amputating the leg. Instead, they've referred them to a clinic in Vienna, hoping they might be able to operate on the affected knee and actually save the limb. As it stands, the sarcoma has started breaking through the skin near the knee... and honestly, the whole situation is grim. It takes a massive toll on your mental state; it’s hard enough dealing with it internally, but when you see the physical reality of it, it just hits you. It’s devastating to witness.

All malignant tumors create metastases—that is quite literally the definition of being malignant.

We finally got Mom settled into her facility in Springfield, and honestly, seeing it was heartbreaking. There were eight or nine people packed into one room. But what’s even more devastating is the discharge summary—the pathology report reads *carcinosa metastaticum*. It states that everything has been hit: the liver, intestines, gallbladder, spleen... basically the entire peritoneum. Meanwhile, those people over at Rebro act like they're doing us a favor by being vague, treating us like we aren't capable of understanding the gravity of the situation. The doctor I cornered today about an abdominal ultrasound just mumbled something incoherent and practically bolted from the room to avoid me. Compared to that, the staff here in Springfield is night and day. The doctor actually took the time to read the discharge papers, quietly and compassionately asked if we understood the diagnosis, and seemed genuinely relieved when we told him we did. I cried the entire drive from Springfield back to Washington, D.C., and the tears just won't stop. The deception is over. That pathology report told us everything we needed to know.🙂

Grace Fowler said:Greetings to all my fellow warriors!!!
I read and follow along with you all every single day, though I must admit I rarely find the words to chime in.... So, six weeks have passed, and this coming Sunday, I am preparing once again for immunotherapy over in Germany... for the most part, things are going okay... the aftermath of the last surgery and chemo has been slightly more taxing than before, but it isn't entirely unbearable.....

P.S. Nancy Thomas18—hang in there, things have to get better eventually :-)
gentlemoose62—I trust you are doing well and staying upbeat; if I’m being honest, I’m almost envious of all those wonderful scents you get to enjoy out in California :-)

And to EVERYONE, every single one of you, both the new faces and the veteran fighters, I am keeping my fingers crossed and truly believing in your victory over this "beast."

Sincerely, your Dina

Stay strong! No matter how much it feels like the side effects have become a bit heavier—you are a fighter, and you simply refuse to back down!

I trust that both the travel and the immunotherapy will go smoothly! Sending you a huge hug, just keep moving forward bravely!!!!

Amanda Miller69 said:We moved Mom into the facility in Springfield, and honestly, my heart just sank when I saw the conditions there... there were eight or nine people crammed into a single room. But what’s even more devastating is the discharge summary—the pathology report shows *carcinosa metastaticum*. It states that everything was affected; the liver, intestines, gallbladder, spleen... basically the entire peritoneum. Meanwhile, back at Rebro, they try to pull the wool over our eyes like we’re toddlers... The doctor I approached today regarding an abdominal ultrasound just mumbled something under his breath and practically fled from me. In stark contrast to those people, the staff in Springfield are night and day. The doctor there actually took the time to read the discharge papers and quietly, almost sympathetically, asked if we understood the diagnosis... he seemed relieved once we confirmed we did. I cried the entire drive from Springfield back to Washington, D.C., and the tears just won't stop... The deception is finally over. That pathology report told the whole truth.🙂

No matter how much it hurts because Springfield feels so far away... if you've noticed for yourself that the care there is worlds apart, then that means things will be okay...

If we had just blindly accepted whatever they told us, who knows where we would be today. In two days, it will be exactly one year since Mom was discharged with a report stating her ovarian cancer had progressed to involve surrounding organs, including the lungs. She is doing well today, despite how grim the prognosis looked back then, and I am so grateful to everyone—especially to her and my father, for never wavering for a single second.

Our fight continues, and we rely only on ourselves.

Sometimes doctors simply don't know how to deliver a diagnosis, so I highly recommend that you don't let yourselves be misled; instead, just take it one day at a time. Hang in there... kisses

Nancy Hernandez43 said:No matter how tough it feels because Springfield is such a trek... if you've noticed for yourself that things just feel fundamentally different, then everything will turn out okay.

If we had just surrendered to those initial findings, who knows where we would be today. In two days, it will be exactly one year since Mom was discharged from the hospital with a discharge summary stating: advanced ovarian cancer that had spread to surrounding organs, including the lungs. She’s doing well today, despite how grim those forecasts looked at the time. I am so incredibly grateful to everyone—but mostly to her and Dad—for never wavering for even a single moment.

Our fight continues, and we rely solely on our own strength.

Sometimes doctors simply don't know how to break the news of a diagnosis. Regardless, I strongly recommend that you don't live in denial; instead, just try to take it one day at a time. Hang in there. Kisses.

It wasn't actually the doctor saying it, but rather what was written in the discharge papers. Afterwards, we called the clinic in Springfield to ask the doctor how she seemed (since he had seen and spoken with her), and he said she was stable, but things weren't looking good. I also reached out to a friend of Mom's who is a diagnostician; he told me quite bluntly that it was a heavy and very serious prognosis. He mentioned wanting to visit her there, but since he doesn't have a car, he just said he'd come by when he gets home—if he makes it back, which was clearly an accidental slip of the tongue.

I haven't managed to catch up on all the posts yet, so I've got a question... My dad just finished three rounds of chemo (three days straight) and now he's in a three-week break. He had a bone scan today, so we're just waiting on those results. Honestly, he feels like crap right now—dizzy, nauseous, vomiting... It's wild because just yesterday he was feeling fine enough to spend the whole day watching tennis. Does his mood and energy level really swing that much from one day to the next?😕
I have a million questions, but I don't even know where to start. 😢😢
I'm terrified, and I am seriously scared for my dad.😢

Grace Fowler said:Hey there, my fellow warriors!!!
I read everything and follow along with you all every single day, though I have to admit I rarely jump in to write anything... So, six weeks have flown by, and this Sunday I'm heading back to Germany for more immunotherapy... Everything is going okay for the most part... the side effects from the last surgery and chemo are hitting me just a little harder than before, but nothing I can't handle.....

P.S. Nancy Thomas18—hang in there, things have to get better soon! :-)
gentlemoose62—I hope you're doing great and staying positive; honestly, I'm a little jealous of all those amazing scents you get to enjoy out in California :-)

And to EVERYONE, old and new fighters alike, I'm rooting for you and truly believe you'll win this fight against "the beast."

Much love, your Dina

Dina, we are right there with you—you’re a total warrior, I know it. You'll figure everything out in no time...
Sending you so much love, just keep moving forward!👍

Amanda Miller69 said:It wasn't just the doctor’s word, but rather the official discharge papers themselves... After we left, we called Springfield to check in with the physician—since he had actually seen her and spoken with her personally—and he mentioned she was stable, though certainly not doing well. I even reached out to an old friend of my mother's who works as a diagnostician, and he was quite blunt about how grim and incredibly serious this prognosis looks; he expressed a desire to come visit her there, but since he doesn't have a car, he suggested he would stop by once he makes it back home—if he even makes it back, which was clearly a slip of the tongue...

I truly hope you can find some way to get that family friend over to see her. In our own struggle, everything pivoted on the fact that a former colleague of the parents showed up in the middle of the night—summoned by the father, who was understandably losing his mind with worry and paralyzed by those terrible test results—and stepped in to provide a personal diagnosis. He became so deeply invested, acting as both a devoted friend and a seasoned expert, that the entire fight felt somewhat more manageable because of his involvement...

Hang in there... keep your faith and do everything within your power. My thoughts are with you all.

I’ve been reading through these heartbreaking stories today—and unfortunately, they seem to be getting more frequent by the day. I actually just posted a few lengthy pieces regarding this subject, which you can find over at http://www.mayoclinic.org/health/

It is my sincere and heartfelt hope that these might offer some measure of assistance to someone out there.
There are always paths that reveal themselves just when we feel we've reached a dead end and have nowhere left to turn. One simply has to find the courage to follow their own North Star.
Miracles truly do happen, and if we hold onto faith in them, it feels as though the entire universe conspires to make our wishes a reality.

As long as there is even a tiny flicker of life remaining, there is hope that the flame will catch again and swell into a roaring fire; please, stay certain of that.

With my very best wishes,
Jeremy Ortiz

I haven't had the energy to check in sooner... my aunt passed away last week. She just drifted off into sleep. I want to thank everyone for all the support you've shown me. Please keep fighting and stay strong for me; she was such a fighter, battling until her very last breath, trying so hard to stay awake. I am proud of her with all my heart.

Anonymous said:I didn't have the energy to post sooner; my aunt passed away last week. She just fell asleep... Thank you all for the support. Please stay strong for me; she was a true fighter who fought until her very last breath, fighting so hard not to drift off. I am proud of her with all my heart.

😢 I'm so sorry.
Your aunt had a niece who loved her deeply. That connection is everything, and it’s why she was happy.

wickedangel, our poor luck :-(((
Hang in there, everyone!!!

My deepest condolences 😢

brightgardener8 said:...

Hey brightgardener8, what’s the deal? How are things going with you, your mom, and your sister?

Angela Wright said:Hey brightgardener8, what's the word? How are things going with you, your mom, and your sister?

Check your PMs. 🙂

After endless deliberation, consulting experts, and scouring every possible option—since my sister and I are total laypeople when it comes to medicine—we’ve hit a wall. We were desperately grasping at straws to save our mother. But after speaking with the specialist today, who told us there is simply no hope left, we have accepted the reality: we cannot cure her. Our only goal now is to ensure her remaining time is spent with dignity, minimizing her pain and suffering. It is devastating to say, but we are stepping back from the fight to focus solely on giving her the love she deserves. As I write this, the tears are making it impossible to even see the screen. The helplessness is overwhelming.
Please forgive my state; I truly believe we have exhausted every single avenue for her.
Unfortunately, the diagnosis came too late. She has a tumor in the small intestine and abdominal wall that has already metastasized to her lungs, liver, kidneys, and likely elsewhere.
Her overall condition is critical; she has lost all will to fight and is battling advanced osteoporosis, weighing only about 105 pounds.
How am I supposed to help her if I can't fix this? All I have left is love.
I could write a whole novel about how she sacrificed her entire life for my sister and me, but that feels redundant. Every mother does that, yet mine is extraordinary—even now, her only concern is easing the burden on us. Forgive me, but I am choking up too much to continue.
Good luck to everyone still holding onto hope. Mine has finally gone out. Sis, I'm sorry.

I truly believe there is still a glimmer of hope left within you all, and that you will find ways to return your mother’s love by making this time as easy for her as humanly possible.

It breaks my heart to hear she is in such poor physical condition and that you feel as though you've reached a dead end. I can only begin to imagine the weight of the emotions you are carrying right now...

In my view, you owe no one an explanation—just try to remain brave and steady; don't let the waves of emotion pull you under, because your mother needs you to be her anchor right now. Try to stay composed when you are with her. Hang in there...

Sandra Evans13 said:After endless nights of soul-searching, consulting experts, asking every question imaginable, and scouring for any shred of hope that my sister and I—who, let's face it, are mere laypeople when it comes to medicine—could find for our mother... I think we finally came to terms with reality today. After speaking with her trusted doctor, who told us there is simply no saving her, we have accepted that we cannot cure her. All we can do now is help her navigate the time she has left with as much dignity and as little pain as possible... It is devastatingly hard to admit, but we are stepping back from the fight to focus solely on surrounding her with the love we feel for her... As I write this, the tears are blurring my vision so much I can barely see the screen; my heart just feels heavy with this crushing sense of helplessness...
Please forgive me for breaking down like this, but I know deep down that we have done everything within our power for her...
Unfortunately, we didn't realize the full extent of her condition until it was too late (a tumor in the small intestine and abdominal wall that has already spread to her lungs, liver, kidneys, and likely elsewhere...
She is in very poor health, has lost all will to fight, and is struggling with advanced osteoporosis (she's down to just 105 pounds)...
How else can I help her if not through love?
I could write an entire novel about how she sacrificed her whole life for my sister and me, but perhaps that's unnecessary since so many mothers are selfless—though mine truly is one of a kind, even now, thinking only of how to make things easier for us... Forgive me, but I am choking back tears as I type these words and simply cannot go on...
My thoughts are with everyone who still holds onto hope... mine has flickered out... Sis, please forgive me...

Sandra Evans13 said:After endless soul-searching, consulting experts, asking everyone we could, and scouring every possible avenue—trying to grab onto even the tiniest shred of hope for our mother (since my sister and I are complete laypeople when it comes to medicine)—I think we’ve finally reached a breaking point. After speaking with the specialist today, who essentially told us there's nothing left to be done, we’ve had to accept the reality that we can't cure her. Our focus now has to shift toward making her remaining time as comfortable and painless as possible... It is incredibly painful to admit, but we are stepping back from the fight. We just want to surround her with the love we feel for her. Honestly, as I type this, the tears are flowing so hard I can barely see the screen. My heart is just breaking from the sheer helplessness of it all...
Please don't judge me for being a wreck right now, but I truly believe we have done everything humanly possible for Mom...
Unfortunately, we found out about the extent of it too late (a tumor in the small intestine and abdominal wall that has already spread to the lungs, liver, kidneys, and likely everywhere else...)
Her overall condition is quite poor; she has lost her will to fight, and advanced osteoporosis has left her weighing only about 105 pounds...
How am I supposed to help her if all I can do is love her?
I could write a whole novel about how she sacrificed her entire life for my sister and me, but I suppose that’s cliché—though she really was one of a kind. Even now, her only thought is how to make things easier for us... Forgive me, I’m choking up so much I can't even finish this sentence...
Good luck to everyone still holding onto hope. Mine has gone out... Sis, I'm so sorry...

My dear,
I understand you completely because I am standing in the exact same place. I held onto hope until last Friday, right up until I saw the discharge papers confirming the metastatic carcinoma—basically, everything is affected. We have her settled in a facility near Springfield. She’s in pain, and they’re giving her 10mg of Tramadol twice a day (a doctor friend of hers mentioned that’s a massive dose). She can't eat, she has no appetite, and she can't even manage a decent cup of coffee...
On top of that, she’s incontinent, frail, and looks terribly ill. We are just praying to God to take her soon so she doesn't have to suffer. The doctors in Springfield say it could be three days, a few weeks, or even months. Based on her experience losing many relatives to cancer, my sister-in-law thinks it might only be 10 to 15 days. Meanwhile, Mom's doctor friend suggests it might stretch to a couple of weeks. Beyond the physical toll, Mom is depressed; she drifts in and out of lucidity, and when she does come to, she gets agitated and insists on going home. Most of the time, she can barely speak. If I knew this would only last a day or two, I’d bring her home so she could pass away in peace, but I simply cannot afford 24-hour nursing care, and I wouldn't be able to handle watching her die right in front of me. My dad passed away three years ago from a heart attack, and my brother has his own family to look after, so my boyfriend and my aunt are my only sources of support right now. My brother is actually struggling even more than I am. Hang in there; this is the hardest season of our lives, and we just have to push through it. Pusa and a biiiiiiiig hug🙂

Anonymous said:I didn't have the energy to reach out any sooner, but my aunt passed away last week... she just drifted off to sleep. I wanted to thank everyone for all the support you've shown me; please keep fighting and stay strong for me. She was such a fighter, truly battling until the very last second, fighting so hard just to stay awake. I am proud of her with everything in my heart.

Please accept my deepest, most sincere condolences. 🙂