Support for families dealing with cancer and other serious illnesses (Part II)

Donna Brooks20 said:Thanks for getting back to me so fast. It’s a bit of a relief hearing you say that Melada is a good doctor and will know how to guide us.
Is there any hope for a cure, or has this all just gone too far?

I don't post on this forum much, but I'm lurking here every single day—and I just couldn't let this slide without replying to you.

Testicular cancer is actually treated incredibly well these days, even when it has spread further; it can definitely be cured. Of course, everything hinges on what the actual clinical situation is and how your guy responds to the treatment.
I really hope you guys aren't stuck waiting around—you can't afford to waste any more time.

You've probably heard about the cyclist Armstrong. When he was 25, he was diagnosed with testicular cancer that had already metastasized to his abdomen, lungs, and brain (if you Google it, you can find all the specifics yourself).
He went through the treatment, hit remission, and then went on to win the Tour de France several times.

So yeah, there is absolutely hope. There’s hope as long as there's breath in your lungs, and you shouldn't approach this situation any other way.

Everything ultimately comes down to the specific tumor type, the stage, his overall health, and how his body reacts to the meds.

I’m pulling for you guys with everything I've got and hoping the treatment is a success.
But seriously—do whatever you can to speed things up, because it feels like you've already lost too much precious time.

My son experienced a recurrence of his brain tumor last year. His initial diagnosis ten years ago was an anaplastic astrocytoma; he underwent chemotherapy with Temodal, radiation, and surgery back in 2005. In 2006, he had to undergo a second surgery following a severe seizure and a fall that resulted in a brain contusion.

Fortunately, after all of that, he recovered beautifully. While there were some minor lingering effects, he lived a practically normal life for ten years—right up until last year. He even drove his own car and lived quite a standard life, for lack of a better word.

Then, at the end of April last year, he was watching TV and seemed to lose consciousness for a few moments. We immediately scheduled an MRI, which confirmed it was a recurrence. Following that, we met with a neurosurgeon who made it clear that surgery was off the table, and the oncologist was skeptical about radiation since he had already undergone significant radiation during his first round. They performed a biopsy, which revealed both glioblastoma and anaplastic astrocytoma. By late August, they started him on radiation again because there simply wasn't any other option, along with Temodal. He completed 30 sessions of radiation while taking Temodal 160 mg daily. After the biopsy, he was also prescribed dex—8 ml twice a day.

After that initial cycle, we had one cycle of 160 mg for 20 days, followed by two or three cycles of 320 mg for five days. He struggled immensely with those higher doses, so they moved him back to the 20-day cycle of 160 mg with a nine-day break. He tolerated the lower doses much better; he took the Temodal alongside Reglan to manage the weakness, and he did alright.

He continued that way through the end of August. Of course, we were doing MRIs every three months and monitoring his blood work... there weren't any major issues. I know that toward the end of May, the oncologist was still satisfied with the MRI results. Gradually, we were able to taper his dex down until he was only taking 2 ml in the morning.

We remained somewhat optimistic through the end of August—but then the MRI showed things had worsened significantly. The medical board decided on PCV chemotherapy; he completed one cycle, but he didn't make it to the second.😢.

One night, there was a hemorrhage—bleeding in the brain. Everything moved so incredibly fast... I honestly never imagined it would mean the end. He woke up in the middle of the night with a massive headache, losing function on his right side, and vomiting. There was nothing the hospital could do; we just had to wait. By the time the ambulance got us to the hospital, he was unconscious, and within two hours, he had slipped into a deep coma.

I spend so much time reflecting on that night. Could I have done more? Did I do everything within my power? I can still vividly remember waiting for the paramedics; he was almost unconscious already. I kept wiping him with a wet cloth, repeatedly telling him that I loved him and that everything was going to be okay.
The doctors told us the hemorrhage was too extensive; too much of the brain was affected. Late that night, he fell asleep forever.

Up until his final day, he lived "normally"—he was mobile and pain-free, which provides us with a small measure of comfort. It would have been so much harder if he had lost himself bit by bit; he was terrified of that happening. But he was such an optimist, always talking about what he would do once he recovered. I was aware of his diagnosis—I think we all were—but no one expected it to end this abruptly.

But the fact that he is gone hurts so deeply. I miss him so much; it feels like there is this massive, hollow void inside me.

p.s.: Please excuse my poor English; I am not from the US.

Ashley Reed98 said:My guy’s tumor came back last year. Ten years ago, the diagnosis was anaplastic astrocytoma. He went through chemotherapy with Temodal, radiation, and surgery back in 2005; then in 2006, he had to have another surgery after a severe seizure and a fall that caused a brain contusion.

After all that, he actually recovered quite nicely. There were some minor lingering effects, but for ten years, he lived practically normally—right up until last year. He was even driving and living his life just fine.

Then, at the end of April last year, he was watching TV and seemed to lose consciousness for a few moments. We rushed him for an MRI immediately, and it showed a recurrence. The neurosurgeon said surgery wasn't even an option, and the oncologist was skeptical about more radiation since he had already been through quite a bit. They did a biopsy, which revealed it was glioblastoma and anaplastic astrocytoma. By late August, we started radiation again because there was no other choice, along with Temodal. He did 30 sessions of radiation while taking Temodal 160 mg every single day. After the biopsy, he was also put on dex—8 ml twice a day.

Following that cycle, they did one round of 160 mg for 20 days, followed by two or three cycles of 320 mg for five days. He couldn't handle those higher doses at all, so they switched him back to 20 days of 160 mg with a nine-day break. He tolerated the lower doses much better; he took the Temodal alongside Reglan to help with the weakness, and he was doing okay.

He stayed like that through the end of August. Of course, we were doing MRIs every three months and monitoring his blood work... everything seemed fine. I know that as late as May, the oncologist was still satisfied with the MRI results. We gradually tapered off the dex until he was down to just 2 ml in the morning.

We remained optimistic until the end of August. That’s when the MRI looked much worse. The medical board decided on PCV chemotherapy; he finished one cycle, but he didn't make it to the second.😢.

One night, there was a hemorrhage—bleeding in the brain. Everything moved so incredibly fast... I honestly didn't think it meant the end. He woke up in the middle of the night with a massive headache, losing function on his right side, vomiting... There was nothing the hospital could do; we just had to wait. By the time the ambulance got him to the hospital, he was unconscious, and within two hours, he was already in a deep coma.

I spend so much time thinking about that night. Could I have done more? Did I do everything in my power? I can still see us waiting for the paramedics; he was almost out of it, and I was wiping him with a wet cloth, telling him over and over that I loved him and that everything would be okay.
The doctors said the bleeding was too extensive; too much of the brain was affected. Late that night, he fell asleep forever.

Up until his final day, he lived "normally." He was mobile and pain-free, which is our one small comfort... It would have been so much harder if he had lost himself piece by piece; he was terrified of that. But he was such an optimist, always talking about what he was going to do once he recovered. I knew his diagnosis—I think we all did—but nobody expected it to end this quickly.

But the fact that he’s gone hurts so much. I miss him terribly; it feels like there’s this huge void inside me.

p.s.: Sorry for any mistakes in my English, I'm not from the US.

Honey, you were gifted ten wonderful years. The battle was lost the moment they determined the tumor wasn't operable. In some places, someone might go for an MRI every four months and treat any sign of recurrence with Gamma Knife, but unfortunately, we are far from having access to that here.
The bleeding was likely caused by the damage from the massive radiation doses his brain had endured over his lifetime. It was basically an all-or-nothing gamble.
Honestly, given the hand he was dealt, it’s better that he actually made it out on his own two feet. I find myself wondering why God didn't just take my mom at the table instead of forcing her through that kind of agony—something that stripped away every ounce of human dignity. I would have been truly grateful for that.
I know that doesn't offer any real comfort and that the void you're feeling is immeasurable, but that's just how it is.
I wish you peace in your heart and hope you somehow find the strength to keep moving forward.
My sincere and deepest condolences.

So, a close buddy of mine just got hit with a brain tumor diagnosis—and it’s already metastasized. It’s just unreal. Like, fifteen days ago, this guy was out there hitting several miles on his walks, feeling absolutely top-tier. Then, suddenly, the last couple of days hit and everything flipped. He’s starting to forget basic stuff, like how to tie his own shoes, he's stumbling around, and he can't even control his hand properly. They ran a CT scan and they’ve got surgery scheduled for Tuesday. I honestly can't wrap my head around it... how a diagnosis can go from zero to being this devastating so fast.

George Sullivan31 said:A buddy of mine just got hit with a diagnosis of a brain tumor with metastases. Just fifteen days ago, the guy was out walking a few miles, feeling absolutely fine. Then, over the last couple of days, he started forgetting how to tie his shoes, having trouble walking, and losing control of his hands. He had a CT scan done and surgery is scheduled for Tuesday. I honestly can't wrap my head around how brutal this diagnosis is.

Think about it—if there are metastases in the brain, they have to be coming from some other primary tumor. Gliomas don't metastasize.

Angela Wright said:Look, you have to consider that brain metastases usually come from some other primary tumor somewhere else. Gliomas don't metastasize like that.

Listen, ma'am—after looking at the CT scan, the doctor was pretty clear that we're dealing with a primary brain tumor that has spread. But honestly? My gut feeling—and it felt the same to me—is that the actual primary tumor is located somewhere else entirely, like the colon or the prostate, and it just migrated to the brain.

George Sullivan31 said:Ma'am, after reviewing the CT scan, the doctor stated it’s a primary brain tumor with metastases. I also had the feeling that the actual primary tumor is located somewhere else—like the colon or prostate, for instance—and it just spread to the brain.

I’m hearing this for the first time. He might have meant that it spread from one area to other parts within the brain itself. But technically speaking, those aren't metastases, because you're still dealing with the same organ. By definition, metastases are cells from a primary tumor that travel to establish new sites in different organs or bones. Since glio cells only exist in the brain and the spine, they can't just wander off and settle in the rest of the body. Even spreading to the spine is incredibly rare.

Ashley Reed98 said:Until the very last day, he lived "normally." He was mobile, relatively pain-free, which provides us with a small shred of comfort... It would have been so much harder if we had watched him fade away bit by bit; the fear of that was overwhelming. But he remained such an optimist, always talking about all the things he’d do once he recovered. I was aware of his diagnosis—I think we all were—but none of us expected everything to conclude this abruptly.

But the reality of his absence hurts so deeply. I miss him terribly; it feels as though there is this massive, hollow void inside me.

p.s.: Please excuse my imperfect English, I'm not originally from the US.

Time moves incredibly fast, especially when you know the days are being counted down.
It is so clear how much you loved him, and that kind of love is something neither death nor time can ever strip away from you. He will live on through you, forever.

Every one of us carries our own life story, and it’s impossible to truly answer the question of "why me?" Perhaps there is a reason, perhaps there isn't. The only thing that offers me any solace in this misery is that navigating all of this has helped me grow; it has made me stronger and more resilient against the trivialities of life.

My wish for you is that you find a way to process this grief, so that eventually, this pain transforms into pride and beautiful memories. I hope you find the strength to live again, to laugh, and to find joy in the little things—and may you never forget that you were part of a truly magnificent fight.

Wishing you all the best, dear 😘

I'm facing a crisis right now.
Basically, my Dad is currently with me in Washington, D.C., and this Wednesday he has a follow-up appointment with his oncologist to decide on the next steps for his treatment. His diagnosis is glioblastoma.

Right now, he is completely immobile.
He needs to get an MRI. Since we aren't local residents here in D.C., he isn't registered in the system, which means he can't even get blood work done or schedule an MRI through the standard channels, even though he’s staying here with me.
To make matters worse, Medicare won't cover transport because his current location isn't his primary residence, so they are telling us he has to go all the way to Gospić to get the MRI done.
We simply cannot make the trip to Gospić because using a private medical facility would cost $1000!
It feels impossible—we are expected to transport a man who is physically unable to move, suffering from such a devastating diagnosis, without shelling out THOUSANDS OF DOLLARS!
It’s just not feasible; we are already struggling to cover the basic costs of his medical care, and now we're hit with this on top of everything else.

I went to some hospitals here in D.C., and they told me there’s a three-month waiting list just for an MRI.
I don't understand it. He is already mid-treatment, yet everyone seems to be turning him away.
Is there any way I can at least get a reimbursement if I'm forced to pay out-of-pocket for a private facility or a private consultation?

I'm not sure if I'm making sense; I'm honestly just in shock.

Grace Ross20 said:I'm dealing with a mess right now.
So, my Dad is currently in Washington, D.C., and he has a follow-up appointment with his oncologist this Wednesday to figure out the next steps for his treatment. The diagnosis is glioblastoma.

Right now, he’s immobile.
He needs an MRI. He isn't registered here in Washington, D.C., because we aren't locals, so he can't even get bloodwork done or schedule an MRI through the local system, but he's staying here with me for the moment.
On top of that, Medicare won't cover transportation for him because where he is staying isn't his permanent residence, so they're telling us to go all the way to Gospić to get the MRI done.
We can't make it to Gospić because private medical care costs $1000!
Basically, there is no way to transport a man who can't move and has such a devastating diagnosis without shelling out THOUSANDS OF DOLLARS!
It's impossible; we are already barely scraping by just covering his basic treatment costs, and now we have this on top of everything else.

I went to the hospitals in Washington, D.C., and they told me there’s a three-month wait for an MRI.
I don't get it. He is already mid-treatment, yet everyone is just turning him away.
Is there any way I can get a reimbursement since I'm being forced to pay for private healthcare or a private scan?

I don't know if I'm making sense—I'm just in total shock.

The medical facility needs to request his medical records, and Medicare should be covering the cost.
Honestly, I feel like storming into the Department of Health and Medicare with a sledgehammer to tear the whole thing down and start over from scratch.
By the way, the doctor treating him really dropped the ball; he knows a follow-up MRI is required after the first cycle, and I was the one who actually had to scramble to schedule the scan myself. These waiting lists aren't anything new.

My advice to you is this: never rely on doctors to handle the technical or bureaucratic side of things. You always have to stay one step ahead. Everything you just described is an old story, and nothing has changed since 2005 when my mother got sick. In this system, you have to be two steps ahead of everyone else.

Once again, I’ve come here looking for some common sense advice, because honestly, this is the only place where I can find it.

So, my Dad was diagnosed with GBM back in August.
In September, he went to the Mayo Clinic for mapping to pinpoint the radiation site. They ran an MRI at the same time. Back then, Dad could still stand on his own two feet, talk normally, and was in really great general shape.
The doctors told us they would call us soon to start radiation and chemo.
A week passes, and I call them. They promise everything will happen "soon." Two weeks go by—still nothing. Meanwhile, his condition is deteriorating every single day; he can barely speak, let alone walk.
Finally, after three long weeks, they call us in. Dad arrives at the hospital completely mute; he can't even lift his right arm or leg. He just sleeps constantly and suffers from this horrific, heavy coughing and trouble swallowing.
I asked if they had performed a CT or an MRI upon his admission, but they told me there was no need since he had just done one during the mapping process.

Because of his declining physical state, they had to scale back the radiation and chemo, limiting him to just 15 sessions. He actually tolerated those quite well. They sent him home with a follow-up scheduled for a month later.

We had the follow-up today. A new MRI shows a slight progression, but the doctor suggested it might just be an inflammatory response from the radiation, so they aren't going to factor that in. Instead, they are approving Temodal monotherapy.

Here is what is eating at me: How can they possibly know if the tumor hasn't shrunk if they didn't take a scan when he was at his absolute worst? During those three weeks of waiting, his condition plummeted, yet their only point of reference is that initial MRI from when he was still healthy enough to walk into the hospital under his own power.
It is entirely possible that the tumor grew significantly during that gap and has actually shrunk now, but I don't have anything in black and white to prove it.
How would you all interpret this situation?

Grace Ross20 said:Once again, I’m coming here looking for some common sense advice—honestly, you're the only ones who give it to me.

So, my Dad was diagnosed with GBM back in August.
In September, he went to the Mayo Clinic for mapping to pinpoint the radiation target area. They did an MRI then too. At that point, Dad was still on his feet, talking normally, and doing great physically.
They told us they’d call us soon to start radiation and chemo.
A week goes by, I call them. They promise it’ll be "soon." Two weeks pass, still nothing. Meanwhile, his condition is deteriorating every single day; he can barely speak, let alone walk.
Finally, after three weeks of waiting, they call us in. Dad arrives at the hospital completely mute; he can’t even lift his right arm or leg. He just sleeps and has this horrific, heavy cough and trouble swallowing.
I asked if they ran a CT or an MRI upon admission, and they told me there was no need because he’d just had one during the mapping process.

Because of how much his general health has tanked, they’re scaling back the radiation and chemo, limiting him to just 15 sessions. He handled that part okay. They sent him home with a follow-up scheduled for a month later.

The follow-up was today. The new MRI shows slight progression, but the doctor claims it might just be an effect of the radiation, so they aren't counting it against him and are proceeding with Temodal monotherapy.

Here’s what’s eating at me: How can they possibly know if the tumor hasn't shrunk if they didn't take a scan when he was at his absolute worst? In those three weeks while we were stuck waiting, his condition plummeted, but their only reference point is that MRI from when he was still healthy enough to walk into the clinic on his own.
It’s entirely possible the tumor grew significantly during that wait and has actually shrunk now, but I don't have anything in black and white to prove it.
How would you all interpret this?

He likely had a setback due to massive swelling (edema). My mom went through the exact same thing, and it was also due to the waiting. They basically brushed us off because of the holidays and summer vacations.

Regarding the current MRI results, once brain tissue has been irradiated, it becomes incredibly difficult to tell the difference—especially if the changes are subtle—between necrosis caused by the tumor itself and damage caused by the radiation. The areas they outline are really just for orientation. Practically speaking, the whole head is being treated, so even if the tumor had progressed during that waiting period, it’s caught in the radiation field anyway.
There’s nothing else to say; he’s here now. He moves forward with Temodal, and whatever happens, happens. Hang in there and just take things one day at a time as the situation unfolds.

Thank you, Ivanica 🙂

Now he’s also dealing with thrombosis in his right leg, and they've prescribed him Xarelto. I assume people with thrombosis aren't supposed to be getting up and walking around much? The doctors aren't giving me any straight answers; they just told me to use my own judgment.

Grace Ross20 said:Thanks, Angela Wright 🙂

Now he’s gone and developed thrombosis in his right leg, so they put him on Xarelto. I'm assuming people dealing with thrombosis shouldn't be getting up and walking around too much? The doctors aren't giving me a straight answer; they just told me to use my own judgment.

Good grief 😣
I can't say for sure, but you definitely have to be careful about standing up if he's staying bedridden because of the risk of a pulmonary embolism. Honestly, I have no clue if there's any added risk specifically because of the Temodal.
Hopefully, someone with actual medical expertise will jump in here soon.

Dad's platelet count has improved, and he just wrapped up his first month of Temodal monotherapy.

The issue is that his speech has started deteriorating again, and the oncologist suggested we scale the Decortin back down to 4mg. I'm struggling with how to interpret this—is the tumor becoming more aggressive, or could this potentially be a lingering side effect from the radiation?
He isn't speaking clearly anymore; he can really only manage a handful of words, yet he understands absolutely everything I say to him. On the bright side, his appetite is good and he looks relatively well.
I'm genuinely worried that if he shows up to his follow-up appointment in a month looking like this, the oncologist might decide to suspend the Temodal treatment altogether.

Grace Ross20 said:Dad's blood counts are looking better now, and he just wrapped up his first month of Temodal monotherapy.

The issue is that his speech has taken a turn for the worse again, and the oncologist suggested we drop the Dex down to 4mg. I’m torn—is the tumor aggressively growing, or could this actually be a side effect from the radiation?
He can't speak clearly; he really only knows a handful of words, but he understands everything I say to him. His appetite is fine and he looks okay physically.
I'm terrified the oncologist might pull the plug on the Temodal if he shows up to his follow-up in a month looking like this.

To be honest, I’m not one to go rogue and ignore a doctor's orders, except when it comes to Dex. In our case, they suggested we adjust the dose ourselves based on how things were trending, moving it up or down by 2mg increments as needed. Frankly, 4mg sounds low to me, and it seems obvious that the decline is likely due to potential radiation necrosis. My fear is that you'll end up with runaway edema, which can lead to a massive, dramatic relapse back to square one. If I were you, I'd try the 4mg for a day or two, and if he starts sliding, bump the dose right back up. Definitely circle back with the doctor about this, and make sure to ask about his blood sugar management too. My late grandmother had a monitor, so I used to check my mom's sugar with it. Without Glucagon, things get messy fast.

Thank you, Angela Wright. I think I’m going to move him back up to 8mg of Dex; he was doing so much better at that dose. Yesterday was rough, though—he had these outbursts where he was completely disoriented, spilled yogurt all over himself, and kept pointing at things in the room that simply weren't there.
Otherwise, he looks relatively healthy. He hasn't lost weight, much like Dad, but his muscle mass is definitely wasting away. In a strange way, there's some comfort in knowing he isn't fully aware of how sick he actually is.

I'm weighing the idea of seeking a second opinion regarding surgery, but honestly, I'm torn.
Two specialists in Washington, D.C. turned him down, but I know there are neurosurgeons out there who pull off the impossible. I'm certain they rejected him because of his age and the tumor's location. At the end of the day, I have to ask: how much worse could surgery be? We all know what the prognosis looks like for this disease regardless.

Here I am again, bringing more heavy news. Mom passed away this past Wednesday. She had just come home from the hospital on Tuesday after finishing her radiation treatments, and then she simply fell asleep overnight. To be honest, I didn’t experience any overwhelming shock; given the circumstances, I was bracing for this exact moment. Every single day, we told each other how much we loved one another. I even told her that once she was gone, she should always "visit" me. I prayed to God that she wouldn't suffer, that she wouldn't be in pain, and that she would find the strength to stay with me and my sisters. I never prayed for a cure because, frankly, looking at a diagnosis like hers, I knew that was an impossible mountain to climb. I feel strangely calm, yet strangely lighthearted, because I know I said everything that needed to be said before she left. Truly, God granted her a passing without pain or agony, and He granted us a sense of peace. It might sound shameful to some, but I didn't shed a single tear at the funeral, and neither did my sisters. That evening, we sat together and laughed harder than we ever have in our lives—it was an indescribable feeling. Mom always insisted that instead of mourning her, we should celebrate her life with laughter. I don't know if that's unfair of us, but I can't explain why the grief hasn't hit yet; we are all acutely aware that she is gone. Perhaps the sadness will surface later, along with that deep void where she used to be... I just don't know. Throughout her illness, I gathered so many precious memories. From old photos and videos to the hair we collected after the chemo caused it to fall out—I kept it all as a keepsake for when she's no longer here. I’ve also recorded our phone conversations on my phone, so that in the moments when I desperately miss her, I can just press play and hear her voice again. Reflecting on everything, I realize that certain things are simply meant to happen in their own timing. I spent five years unemployed, and just two months ago, I finally started a new job—Mom, of course, cried tears of joy when she heard. My marriage had been so strained for ten years that I was ready to walk away, but in these last two months, everything has suddenly become wonderful. It makes me think that everything happens for a reason. To everyone currently fighting this disease or watching a loved one battle it: I wish you immense strength. Leave the rest to God, because no matter which way we turn, He always has a plan for us.

boldridge3 said:Here I am again with more bad news. Mom passed away on Wednesday. She had come home from the hospital on Tuesday, finished her radiation and everything, and then she just fell asleep overnight. To be honest, I didn't experience any overwhelming shock; I was expecting this, knowing the situation. Every single day, I told her how much I loved her, and she told me the same. I told her that even after she’s gone, she’ll always "visit" me. I prayed to God simply that she wouldn't be in pain, that she wouldn't suffer, and that she would find the strength to stay with me and my sisters. I never actually prayed for a cure because, let's face it, with a diagnosis like hers, that felt impossible. I feel strangely calm, yet somehow cheerful, because I know I did and said everything I ever wanted to say before she died. Truly, God granted her a death without pain or suffering, and He gave us some peace. It might sound shameful, but not a single tear fell at the funeral—not mine, nor my sisters'. In the evening, we just sat there laughing together like we never have before; it was an indescribable feeling. Mom always used to say we shouldn't mourn her, but instead, we should laugh. I don't know if that's unfair of us, but I just can't explain why there isn't that heavy grief. We all know she's gone... maybe the sadness will hit later, or maybe that realization of her physical absence will. During her illness, I gathered so many memories... photos, videos, even the hair we collected when it started falling out from the chemo—I saved all of it as a keepsake for when she's no longer here. I recorded our phone conversations on my phone, too, for that moment when I'll just want to hit play on a video or a recording to hear her voice again. I'm reflecting on everything and thinking that certain things just have to happen. I was unemployed for five years, and then just two months ago, I finally started working; Mom, of course, cried tears of joy. My marriage had been so bad for ten years that I was ready to call it quits, but in the last two months, everything has been wonderful. So, I think everything happens for a reason. To everyone fighting this disease and supporting their loved ones, I wish you so much strength. Leave the rest to God, because no matter which way we turn, He always has a plan for us.

Dear, please accept my deepest condolences.
I completely understand where you're coming from. There will be harder days ahead; you'll miss her most in those moments when you desperately want her presence for her sake, more than for your own.
I hope that peace in your hearts lasts for a long time.

Grace Ross20 said:Thanks, Angela Wright. I think I’m going to move him back up to 8mg of dex; he felt a lot better at that dose. Yesterday was rough—he had these outbursts, completely lost his bearings, spilled yogurt all over himself, and kept pointing at things in the room that weren't even there.
Otherwise, he looks healthy enough. He hasn't lost weight, much like Dad, but you can see the muscle wasting through the skin. Honestly, it's some small comfort knowing he isn't even aware of what's happening to him.

I’m weighing the idea of getting a second opinion regarding surgery, but I'm torn.
Two specialists in Washington, D.C. turned him down, but I know there are neurosurgeons out there who perform miracles. They likely rejected him because of his age and where the tumor is sitting. At the end of the day, how much worse can surgery actually be? We all know what the prognosis looks like for this disease anyway.

There is a code of medical ethics where doctors refuse to operate if they know it will tank the patient's quality of life compared to where it is now, especially if the surgery doesn't buy them any extra time.
That kind of second opinion should have happened before the oncology treatment started. What we're seeing right now is just the standard progression of the disease, unfortunately.
The goal has to be focusing on his current quality of life and making it last as long as possible.
The fact that he isn't aware of his condition is actually a silver lining. It was the same way with my mom.