Resources and support for families dealing with cancer and serious illness

Bani;7174846 said:thank you 😘. I honestly think you are such an incredibly brave young person, and I always say that there’s a reason for everything that happens to us—that life gives us exactly what we have the strength to handle. It just shows how much grit you actually have, even if you didn't realize it until you were right in the thick of it. 🙂

Hey everyone! I really feel like we need to get organized and pull together as a community to start fundraising, because if we actually join forces, we can take action to find bone marrow donors as fast as possible so these seriously ill kids can finally have a shot at a normal life. I truly believe we can make this happen, but we really need to unite and work together! 🤷🤷

wearygardener56;13039341 said:

hiddentiger80 said:thanks 😘. listen, you really are such a brave young person and I always tell people there’s a reason for everything that happens to us, and that life gives us exactly what we can handle. It just shows how strong you are, though maybe you didn't even realize it until things actually hit the fan. 🙂

Hey everyone! I think we really need to get organized and join forces to raise some funds and take action so we can find stem cells as soon as possible to give these seriously ill kids a chance at a normal life. It’s totally doable, but we really have to pull together!🤷🤷

I kind of wanted to jump in here and add my two cents. Looking at the situation in some of our hospitals—which honestly, can be pretty rough, with staff being way too arrogant sometimes, outdated equipment, and just... poor conditions overall—besides just providing care, we really need to work on improving those facilities. Like, the tech in private clinics is usually top-notch, but the stuff at the government-run hospitals? Not so much. We should strive to make sure that high-quality exams and modern equipment are available at public hospitals too, so everyone gets decent treatment, especially children facing serious illnesses, like bone cancer. For them, feeling comfortable and safe in a hospital setting is so incredibly important. I think we should launch initiatives similar to the ones we saw for the children's hospital in Boston. That would go such a huge help to these kids.

Nothing came of those medications. Mom went to see the neurologist who treated him during his hospital stay, and after a rushed "make it quick, I don't have all day," she said he was given dexamethasone at the hospital. However, they didn't notice any positive effect from it, so their assessment was that there's no point in continuing with it.
So you try being smart about it... Yesterday morning he was incredibly drowsy again and I couldn't wake him up, then by the afternoon he was in great spirits—talkative, cracking jokes, full of energy...
We're still waiting for the radiation machine to be repaired. It is honestly unbelievable that in a single hospital, which serves the entire Midwest and surrounding regions, the radiation equipment would be out of commission for this long.

Since I have immense faith in everything the "New Day" non-profit does, and I take my hat off to them for their initiative, I want to mention one thing that strikes me as odd and might be something to address in the future: when I tried to take leave to care for my father, the doctor told me that according to the law, leave is only available for caring for a spouse or a child. I truly believe it should definitely include caring for a parent as well.

Linda Peterson37 said:Since I have so much faith in everything this non-profit is doing—and honestly, I tip my hat to everyone involved in this initiative—there is one thing I find quite strange that we might need to address down the road. When I looked into taking caregiver leave to look after my father, the doctor informed me that, according to current laws, you can only take leave to care for a spouse or a child. I truly believe that caring for a parent should be included in that coverage too.

That is precisely the question we just brought up before US Congress. For context, here are the specific issues we’ve been pushing forward (I actually wrote a post about this on our forum earlier):

1. Why won't the Mayo Clinic provide patients with their original CT scans upon request? By withholding them, they are effectively stripping patients of their right to seek a second opinion, since no specialist will offer a diagnosis without seeing the original imaging.
2. When will palliative care finally be integrated into standard health insurance coverage?
3. If palliative care and hospice services aren't fully resolved yet, why can't we at least ensure seamless access to caregiver leave? We need to protect those providing essential care—be it a spouse, a parent of a minor, or an adult child looking after a parent battling cancer.

And these are the exact problems our non-profit is determined to tackle... It’s going to be our singular focus. If you'll excuse the bluntness— we are going to relentlessly press the administration, the state, 🙂 and US Congress 🙂 until these questions are answered once and for all!

That is why we need your support, and why I’m asking you to show up for the initiatives we launch. Truly, if anyone feels they have the capacity or the desire to help in any way, please reach out.

Linda Peterson37 said:Forget about any medication... Mom went to see the neurologist who handled his case during the hospital stay, and after basically telling us, "Speak up, I don't have all day," she said he was given steroids while in the hospital. However, they didn't notice any positive effect on him, so they decided it wasn't worth continuing.
So, you just have to play it smart now... Yesterday morning he was incredibly drowsy again—I couldn't even wake him up—but then by the afternoon, he was suddenly upbeat, chatty, cracking jokes, just full of energy...
Meanwhile, we're still stuck waiting for the radiation machine to be repaired. It is honestly mind-boggling that in a major hospital serving the entire Midwest region, the radiation equipment stays out of commission for this long.

Since I have massive respect for everything the "For a New Day" non-profit does—seriously, hats off to them for taking the initiative—there is one thing I find strange that maybe could be addressed down the road: when I tried to take leave to care for my father, the doctor told me that according to the law, leave is only granted for caring for a spouse or a child. In my opinion, caring for a parent should definitely be included in that.

Linda Peterson37, if this were my mom, I’d head straight to a private pharmacy, pick up some medication, and give her at least 12 mg. If I saw an improvement, I’d keep going. Look, there is no harm in trying this for your dad. This is a terminal illness, and everyone knows exactly where this is headed, but if there's a way to make him more comfortable, then do it. If the doctors won't, you do it yourself. That is the reality of "palliative care"—it's just a buzzword politicians throw around when they're busy defending euthanasia as an option.🙄😠
I wouldn't leave that doctor alone until they provided the necessary treatment for the swelling. For heaven's sake, you people are right there with him; you see how much his condition has plummeted. It is glaringly obvious that the edema is spiraling out of control. Try getting him to a neurological ER, and if you have to, scream at them until they actually do something to provide some relief.
Listen, people, you have to be direct and forceful when you're asking for help. You can't just sit there and wait for things to happen; you have to demand that he gets the care he needs.

Angela Wright said:Linda Peterson37, if this were my mother, I’d head straight to a private pharmacy, grab those pills, and give her at least a 12 mg dose. If she showed any improvement, I'd keep going. Look, there’s no harm in trying this for your dad. This disease is brutal, and everyone knows where it’s heading, but if there’s a way to ease his suffering, take it. If the doctors won't, do it yourself. That’s the reality of our palliative care—all talk from politicians who defend euthanasia as an option.🙄😠
I wouldn't lift a finger until that doctor prescribes something for the swelling. For God's sake, you're the ones with him; you know how sudden this decline was. It is blindingly obvious he's dealing with massive edema. Get him to a neurological ER and don't stop making noise until they actually do something to provide relief.
People, you have to be blunt and assertive when demanding help. Don't just sit there waiting; make them act.

Fine, thanks. We'll do that. The thing is, my whole family and I are complete laypeople when it comes to medicine. If I hadn't come here to find actual answers, I wouldn't even know how to help or what direction to take. All we hear from the doctors is stuff like, "Well, what do you expect? You know he's severely ill," or "Don't let anything surprise you, these are all normal conditions." Are you kidding me?! Does that mean we shouldn't bother helping someone who's critically ill? At that rate, why bother with anyone, since we're all going to die eventually anyway. Unbelievable.
😠

Thanks to everyone for the advice. Without your experiences, we would be absolutely lost!

Linda Peterson37 said:Alright, thanks, we’ll go with that plan! Here’s the thing, though—my whole family and I are total amateurs when it comes to anything medical. Honestly, if I hadn't come here to find some actual answers, I wouldn't even know how to help or which direction to take. All we’ve heard from the doctors is this dismissive, "Well, what do you expect? You know they're seriously ill," or "Don't let anything catch you off guard, these are all normal symptoms." Excuse me?! What is that supposed to mean? That because someone is critically ill, we shouldn't bother trying to do anything? If that's the logic, then why bother with anyone at all, since we’re all going to die eventually anyway. Seriously, give me a break!
😠

Honestly, thanks to everyone for all the advice. Seriously, without your collective experiences to lean on, we would be absolutely lost right now.

Linda Peterson37, we’re going through the exact same thing right now. Honestly, I was just telling Angela Wright that if I didn't have this forum to vent to, I’d probably be losing my mind.
I’ve at least braced myself for whatever's coming our way, so I won't be completely blindsided when the hammer finally drops. If I hadn't prepared, I'd honestly be in total shock right now—and we all know that would've been 100% the case.
My sister’s at the ER right now with my mom, just sitting there waiting for someone to actually do something. She’s been in pretty rough shape since yesterday—just constant, heavy panting and she can barely even stay on her feet. It's a mess.

Hi everyone,

I’ve been lurking on this forum for a while now, watching the discussions, and I finally decided it was time to step up and join the conversation. My mother is currently battling ovarian cancer, which was diagnosed two years ago at an advanced stage and has since spread to the peritoneum. She has already endured two surgeries, nine rounds of chemotherapy, and six doses of cytostatic drugs. Things seemed to stabilize for a period, but she recently developed ascites in her abdomen. We’ve been working with specialists at the Mayo Clinic, and she’s scheduled to be admitted this Monday, followed by a HIPEC procedure the following week—apparently, that surgery is a marathon that takes all day. Another doctor we consulted mentioned that based on the CT scan, the tumor appears operable, though he noted that once they actually open her up, the reality might change. It’s a lot to carry right now; my father passed away from a heart attack three years ago, so facing the possibility of losing my mother feels incredibly heavy. Does anyone here have experience dealing with this specific type of cancer?

So my dad’s going through chemo right now because he’s battling lung cancer, and I’ve been the one playing chauffeur—driving him back and forth from the hospital, which is about 62 miles away. One time, the guy was in absolute agony with hip pain on the way home, so I reached out to the transport service at our local community health center and asked if they could just drop him off right at his apartment—which happens to be on the 4th floor. But get this: they basically just handed me a stretcher and told me I’d have to haul him up those four flights myself.

Here’s what I want to know: Is the medical transport service at a community health center actually obligated to get a patient as incapacitated as my dad up to the 4th floor, or am I supposed to just rely on family and neighbors to do the heavy lifting?

(I already sent this whole mess over to the Department of Health and Human Services to see what they say, but I want to hear your take too)

Amanda Miller69 said:Hi everyone,

I’ve been lurking on this forum for a while now, and I finally decided it was time to step up and join the conversation. My mom is fighting ovarian cancer—it was caught two years ago in one of its final stages and has since spread to the peritoneum. She’s already endured two surgeries, nine rounds of chemo, and six doses of cytostatics. Things actually looked stable for a bit, but she recently developed ascites in her abdomen. We’ve been seeing specialists at the Mayo Clinic, and she’s heading back into the hospital this Monday, followed by a HIPEC procedure the week after, which apparently takes an entire day. Another doctor we consulted mentioned that based on the CT scan, the tumor looks operable, though he warned they might find out otherwise once they actually open her up. My dad passed away from a heart attack three years ago, so facing the possibility of losing my mom too is hitting me incredibly hard right now. Does anyone here have firsthand experience dealing with this specific type of cancer?

Grace Fowler you are fighting this battle incredibly bravely. I'm sure she'll reach out to you herself. Have you checked the non-profit's website yet? There is an entire dedicated thread there focused exclusively on ovarian cancer.

steelhound74 said:My father goes for regular chemo because he’s fighting lung cancer, and I’ve been driving him back and forth to the hospital over distances of 62 miles. One time, he was dealing with intense hip pain on the way home from an appointment, so I asked the transport service at our local community health center if they could help get him up to his apartment, which is on the 4th floor. Instead of helping, they just handed me a stretcher and told me I’d have to carry him up to the 4th floor myself.

So here is my question: Is the transport service at a community health center actually obligated to move a patient that heavy up to a 4th-floor apartment, or is that something family and neighbors are expected to handle?

(I've already sent this inquiry over to the Department of Health and Human Services, but I want to hear what you all think about it)

In my view, that is absolutely their job.☕Next time you find yourself stuck in a situation like that, demand that they put it in writing—have them sign a document stating they aren't competent to provide that specific service, complete with their full name. Let's see how they react when you ask for a paper trail.

Amanda Miller69 said:Hey everyone,

I've been lurking on this forum for a little while now, and I finally decided it was time to jump in. My mom is fighting ovarian cancer—it was caught two years ago in the late stages and it’s spread to the peritoneum. She’s already gone through two surgeries, nine rounds of chemo, and six doses of cytostatics. Things were actually looking okay for a bit, but recently she developed ascites in her abdomen. We’ve been at the Mayo Clinic seeing her specialist, and she’s heading back to the hospital this Monday, followed by HIPEC surgery the week after—which apparently takes an entire day. Another doctor we consulted mentioned that based on the CT scan, the tumor is operable, though he did hedge and say you might not know for sure until they actually open her up. My dad passed away three years ago from a heart attack, so... yeah, it's just really hard right now, thinking that my mom might be reaching the end too. Does anyone here have experience dealing with this specific type of cancer?

Hey there!!!!
First off, I just want to reach out and say hello—we're all going to try our best to support you with advice and just being here. Honestly, in situations like this, I can't stand it when people use phrases like "finally" or whatever, because it's just insensitive. I know things look serious with your mom—they really do—but it's not over yet, okay?! Seriously! Even for me, the prognosis has been pretty grim more than once, but hey, I'm still standing... :-)) Please, let me know which chemo lines she’s already finished. For any other details, just shoot me a private message. You have to stay strong, because when cancer hits, it isn't just the patient who gets sick—the whole family is pulled into it the second that diagnosis drops. It is so incredibly important that you guys try to push through the fear and the grief.
Sending you tons of positive vibes, and please, reach out if there's anything at all I can do to help.
Grace Fowler

Grace Fowler said:Hello there!!!!
First off, I want to extend my greetings; we are all here on this thread to offer whatever advice and support we can. In any life situation, I’ve stopped using—and frankly, I refuse to use—phrases like "finally" or similar sentiments when things are actually serious. Regarding your mother's condition, yes, it is grave, so let's skip the "at last" part, alright? Personally, I've been handed some pretty dismal prognoses more than once, yet here I am... :-)) Please, let me know which specific chemo lines she has already completed. For any other details, just shoot me an email or a private message. Stay strong; cancer isn't just a disease affecting one patient—from the moment of diagnosis, the entire family is pulled into it. It is absolutely vital that you try to push through the fear and the grief.
I'm sending plenty of positive energy your way and I'm available for any information or help you might need.
Grace

Mom was on Taxol for chemotherapy and received Vepesid as her cytostatic treatment.
Then, as if we needed one more thing to worry about right before surgery, she developed a fever of 101°F last night. Your response really touched me this morning, and I feel a little lighter for it.

Angela Wright said:Grace Fowler You’re doing an incredibly good job fighting this. I’m sure she’ll reach out to you on her own. Have you checked the non-profit’s website yet? They have an entire section dedicated specifically to ovarian cancer.

I haven't had a chance to browse the site yet, but I'll take a look now. To be honest, I always find myself dreading what I might encounter when reading those kinds of things. Having this specific thread to turn to has already helped settle my nerves a bit.

Hey everyone, we just got back from a specialist in Germany, and the news regarding the melanoma was negative. They spent two full weeks trying to find even a single tumor cell and came up totally empty-handed. I’m assuming that counts as good news, right? Honestly, I was so incredibly relieved that I felt like running up onto my roof and screaming at the top of my lungs just to let the whole world know, even if people thought I’d lost my mind for a second. :-)

That being said, I’m realistic enough to know that one great report today doesn't automatically guarantee everything will stay perfect tomorrow. On top of that, there is some less-than-ideal news to process—the German doctors now seem to think our surgeons didn't remove the correct lymph node, despite it being identified on the ultrasound and marked with radioactive isotopes, all performed by a doctor we trust implicitly. They’re suggesting a follow-up PET/CT as soon as possible, but to be completely honest, the idea of undergoing that much radiation is pretty terrifying to me. Plus, we've been seeking testing outside our local area because we heard the systems here aren't quite as streamlined yet, which obviously means significant costs are involved. If anyone has any insight regarding the quality of PET/CT facilities here in Washington, D.C., please let me know!

I’ve been following this group for about a month now, ever since we got hit by this whole brain tumor situation.
I’ll try to lay out exactly how everything has played out so far. It’s my father-in-law; he’s 64.
About a month and a half ago, a CT scan picked up a brain tumor. At first, they thought it might be a metastasis, so they ran a chest X-ray immediately, and those results came back clear. The doctor decided surgery was the move, so he went under the knife on February 7th. The surgery itself was a success, and he’s actually recovering really well. We had another CT done seven days later, and the results looked good. However, we still didn't have a definitive diagnosis because we were stuck waiting on the pathology report... and just waiting... Finally, after a full month, we got the news. It’s glioblastoma multiforme, Grade IV. Now we’re all just lost, scouring the internet and realizing just how nasty this thing is. My father-in-law is doing fine right now without any treatment yet. Last Monday, March 10th, he finally saw an oncologist with all his paperwork, and they recommended starting radiation in about a month?!
Is waiting two months—or potentially longer—too long? What’s the typical wait time like in Washington, D.C.? Where should we even start?
Just to clarify, we're based out of Miami.

Kate Ramos40 said:I’ve been lurking here for about a month now, ever since this whole nightmare hit us—we're dealing with a brain tumor.
I’ll try to lay this out chronologically so it makes sense. This concerns my father-in-law; he’s 64.
About a month and a half ago, a CT scan confirmed a brain tumor. At first, the doctors thought it might be a metastasis, so they immediately ran a chest X-ray, which came back clear. The surgeon decided to move forward with surgery, which took place on February 7th, 2008. The procedure itself was a success, and my father-in-law has been recovering beautifully. We had another CT scan seven days later, and the results looked good. However, we were still stuck in limbo without an official diagnosis while waiting on the pathology report. It felt like forever. Finally, after a full month, we got the news: Glioblastoma Multiforme, Grade IV. Now we’re all just reeling, scouring the internet only to realize how brutal this thing actually is. Despite everything, he’s still doing well and hasn't started any treatment yet. Last Monday, March 10th, we finally sat down with the oncologist to go over all the findings, and they recommended starting radiation in about a month.
Is waiting two months—or likely much longer—too long? What’s the actual wait time situation like in Washington, D.C.? Where do I even start?
Just so we're clear, we're coming from Miami.

Look, Kate Ramos40, I have to be honest—before you dropped that post, neither I nor anyone else really saw this coming. slyseal28 We haven't really heard much about this specific type of brain tumor before—it’s actually a sarcoma.😕.
We did some digging online and found that the treatment protocol for this type of tumor is essentially identical to how they handle glioblastoma. It’s a standard three-pronged attack: surgery if the situation allows—which, in this case, it did—followed by radiation and chemotherapy. For glioblastoma, the go-to chemo drug is usually Temozolomide.
The clinical presentation here is textbook. We’re looking at a classic case where the symptoms point directly to a specific diagnosis, and the diagnostic workup confirms it without much ambiguity. It’s one of those medical scenarios that serves as a perfect teaching moment because everything aligns—from the initial physical findings to the laboratory results. When you look at the patient's history and the way they presented, it’s clear there was a significant physiological trigger. The progression from the early symptoms to the acute stage follows a very predictable pattern. It really highlights why understanding the underlying mechanism is so much more important than just memorizing a list of symptoms; once you grasp the "why," the "what" becomes obvious. It’s a great reminder that while modern medicine relies heavily on high-tech imaging and complex labs, a solid foundation in clinical observation still carries immense weight. If you miss the subtle cues in the physical exam, you might miss the forest for the trees. This case is a masterclass in connecting those dots.
Here we go. Here. I’ve been digging through the various clinical trials currently underway here in the States, and it's pretty clear that immunotherapy is taking center stage in so many of them. Looking at what we have going on here in this forum, it's a massive field. Grace Fowler Dealing with ovarian cancer is a heavy burden to carry, and honestly, there aren’t enough words to capture how much it shifts everything in your life. It's an uphill battle that tests every bit of your mental and physical strength. Elizabeth Gonzalez55 Whose husband is battling melanoma? I know a few people who have gone through immunotherapy for their specific type of cancer, and honestly, the results they’ve seen so far have been incredibly promising. You should really do some digging online—there might be similar clinical trials or breakthrough treatments currently underway in Europe as well.
I don’t see the logic in delaying radiation therapy. Given that the patient just went through surgery, we shouldn't be sitting around. In my opinion, you wait just long enough for the surgical wound to heal, and then you hit them with the radiation immediately. You want to wipe out those lingering cells as fast as possible to shut down any new growth and stop cell division in its tracks before they get a chance to multiply.

So, I'm actually messaging with... slyseal28 Someone told me she’s going to check in with the folks over at the Mayo Clinic to get some specifics on this particular type of cancer and see if there’s a better protocol out there. We’ll touch base as soon as we dig up more info.
Hang in there.

Please, if it isn't too much trouble, could you... Non-profit forum Should I start a dedicated thread about glioblastoma? Since we're dealing with such a rare type of brain tumor, maybe someone out there has actually encountered it and can offer some real, concrete answers or personal experience.

Where the heck is Amy Hayes28??? 🤷

dina9 and d_seed, so glad to hear things are looking up!

Mom got some mannitol yesterday, so she actually perked up a bit by the afternoon. She even sat down for a game of Sorry! with my sister and me 😁
She wasn't exactly sure what the pieces or the dice were for, but hey, the win is that she actually showed interest in doing something at all.
We’re just taking it one day at a time and keeping the vibes positive...😢

brightgardener8 said:Where is Amy Hayes28??? 🤷

dina9 and d_seed, I am so glad to hear some good news!

Mom got some mannitol yesterday, so she actually perked up a bit by the afternoon; she even sat down for a game of Sorry! with me and my sister. 😁
She wasn't exactly sure what the pieces were for or how the dice worked, but honestly, the win is just that she showed interest in anything at all.
We’re keeping our heads up and staying positive...😢

Oh, thank God for the mannitol🙏! Is she taking Dexedrine?
Please, walk us through how they finally admitted her—what did you tell them, what was their response, all that stuff—just so people have a blueprint to follow if things get heavy for them.

steelhound74 said:My question is this: Is a medical professional at a local clinic actually obligated to carry a patient this heavy up to the 4th floor—or is that supposed to be left to family and neighbors?

(I sent this over to the Department of Health and Human Services, but I'd love to hear what you all think about it)

Not sure what their official job description is, but I know my brother and I ended up lugging mom ourselves—mostly because the ambulance showed up with a driver carrying a 20-kilo bed and a nurse who wouldn't even follow basic protocol. Mom’s been disabled since she was a kid, so moving her was already a nightmare long before the brain tumor. When I asked why they weren't helping, they basically told me they used to call the fire department, but apparently, those guys don't do that anymore—so we should just move to a building with an elevator.
Don't even get me started on some of the doctors... the sheer ignorance and arrogance was unreal. I've never once tried to act superior to nurses or MDs, but there were times I practically had to recite my PhD thesis just to get them to listen to a single word I said. It's pathetic.