Posts by Aaron Johnson29

Angela Wright said:At the end of the day, death is coming for all of us. It’s a fact. But honestly, no matter how much we struggle or get pissed off that God didn't give us a second chance to fix things—especially when it involves a tiny kid who hasn't even really started living yet—we don't have a choice. We just have to deal with it. To be real, we don't even have to try that hard to act this way; it's just human instinct to react like this. The real problem is the mental block. Our hearts and minds suffer because our will demands something different. Eventually, when you're completely drained and exhausted, you just surrender. You accept the outcome, whatever it may be.

I believe in fate, or whatever you want to call it. And I believe everything will work out. It's just that sometimes it hits you out of nowhere, and I have no clue how I'm supposed to prepare my son for life. I wish I could just take on a portion of the pain and grief my nephew and my sister are going through. I help them as much as I can and stay right by their side, but sometimes I just feel totally helpless. Honestly, I'm more afraid of sickness than death, purely because of this lingering sense of helplessness. It kills me that so many people go through this while there are still so many people out there being reckless, heartless, and greedy. I'm glad I'm not one of them. I truly hope everyone dealing with illness and their families find a way through this. I pray that everything falls into place. That we actually get a shot at being truly happy. I pray that kids get the chance to experience what I've already lived through. Angela Wright, thanks for giving me the space to vent and for the comfort.

Nancy Hernandez43 said:Why did I even bother writing all this? My parents aren't exactly rolling in it; they're scraping by every single month (it's a standard struggle), but they’ve sacrificed absolutely everything to focus on healing. I honestly envy their strength. Sometimes I wonder how they manage to walk those same grueling paths day after day. It’s obvious we lack any real organizations here that would help our "warriors" lift their spirits and strengthen themselves along with their bodies. I'm here to support you all so we can face the fight our loved ones are going through together!

Just keep pushing forward! And I'll say it again—there's a reason why we deal with "these kinds" of illnesses. In my case, my family finally pulled together so we could all grow stronger through this experience!🙂

Hang in there!👍

I'm glad your family stepped up and found some silver lining in these horrific illnesses. But I don't buy the idea that there's always a reason behind it. What's the "reason" when a three-year-old goes through all that hell, only to have to do it all over again at seven? You have a beautiful kid and a happy family that was just starting to breathe easy because the checkups were finally coming to an end. Now, their whole world has collapsed again and they're back in the trenches. They gave up everything and moved to Chicago with his younger brother, and even then, they still can't afford treatment abroad. I hate this disease. I hate that it doesn't hit the people who actually deserve it—and there are plenty of them if you just watch the news. It isn't fair, it makes zero sense, and sometimes it's just too much to handle.

Thanks.

rowdyraven6 said:I don't think that should affect the bone marrow transplant. Whether the disease comes back is different for everyone. Some people bounce back after a few rounds of chemo, some need a transplant, and for others, even a transplant doesn't do the trick. Basically, chemo kills off the bad cells, but there's always a chance a few survivors linger somewhere. After therapy, they're suppressed, but if any remain, they start replicating again—that's how the cancer returns. That’s why they don't just do one round of chemo; you go through full cycles to wipe out as much as possible and aim for a cure. When they get them under control, that's remission, but the threat of a relapse is always hanging there. It really just depends on the individual. That's the whole point of the transplant—introducing healthy marrow to hopefully finish the job. It's great news that you already have stem cells ready, and honestly, it's amazing how well he's holding up both physically and mentally. I believe everything will turn out fine; he just needs to stay a fighter and have you by his side. If you don't mind me asking, how many rounds of therapy has he finished? And did he have to go into sterile isolation? I'm not sure what the setup is like at Salad, we were over at Mercury. I don't know how your experience has been, but the doctors and nurses at Mercury were top-notch.

The results show 97% involvement. They told us they’re going to implant a catheter and start chemo immediately. Depending on how he responds, the treatment could last up to two years.

rowdyraven6 said:I don't think that should affect the bone marrow transplant. Whether the disease comes back really depends on the individual. Some people bounce back after a few rounds of chemo, others need a transplant, and for some, even that doesn't cut it. Basically, chemo kills off the bad cells, but there's always a chance a few survivors are hiding somewhere. After therapy, they're suppressed, but if any remain, they start replicating again—that's how the disease returns. That’s why you don't just do one round of chemo; you go through a full cycle to try and wipe them all out. When they're suppressed, it's called remission, but the threat of a relapse is always lurking. It’s different for everyone. That’s the whole point of the transplant: introducing healthy marrow to aim for a total cure. It's great news that you already have stem cells ready, and honestly, it's huge that he's holding up so well physically and mentally. I'm sure things will turn out fine; he just needs to stay a fighter and have you by his side. If you don't mind me asking, how many rounds of therapy has he finished? And did he have to stay in isolation? I'm not sure what it's like over at Salad, we were at Mercury. I don't know about your experience, but the doctors and nurses at Mercury are top-notch.

He only went into the hospital yesterday, so they just finished the bone marrow biopsy. Results come in today, then hopefully they'll map out the treatment plan. When he first got sick, he was stuck in the hospital for eight months in isolation. He really went through the wringer. As for the specifics of the therapy itself, I can't say much—my sister hasn't given me many details.

Thanks a ton. Now I’m actually feeling a bit more confident that everything is going to turn out fine.

Hey everyone, his doctor is Rajic, but she’s actually on vacation right now, so he's seeing Feminić instead.

Rachel Phillips9 said:Look, Aaron Johnson29, from what I've seen, you've got a solid shot at things turning out fine. Honestly, since you already have the stem cells ready, you're basically halfway there. I know a kid who was going through the exact same thing as my son about a year ago; he had a relapse, but after the standard treatment, they used stem cell therapy and now he’s just a normal second grader with zero issues left.
Which hospital is your nephew at?👍

They're at Mayo Clinic. I'm just hoping it works out, especially since my nephew is physically holding up well right now and seems to be handling the mental side of this better than most. Smart kid. He takes after his aunt.

rowdyraven6 said:Listen, Aaron Johnson29, just hang in there. My brother was diagnosed with leukemia three years ago, and we walked him through the entire gauntlet—every single round of chemo and the whole bone marrow transplant process. If you need to vent or ask anything, I'm here. I don't want to freak you out, but I'll be straight with you: I lost my brother to this damn disease. His case was different, though. The doctors thought the rapid cell growth during puberty triggered a massive spike in those malignant cells. I still remember the doctors telling us that things might go smoother if he were younger. They basically said the odds for a full recovery and getting back to a normal life are much higher with younger patients—kids, mostly. They put the success rate somewhere around 80%, which is actually pretty high. 🙂 😘

Thanks for letting me lean on you, because honestly, I don't know who else to turn to. What’s really keeping us up at night is the idea of a relapse. Since you've been through the wringer, do you know if a recurrence affects how well a bone marrow transplant works? It's a silver lining that my sister had her second son, so they harvested stem cells from the umbilical cord when he was born. But we're spiraling wondering if the fact that the disease came back changes the math on whether the transplant will actually fix things.

Thanks a ton, Angela Wright, for the kind words. It feels like everyone around here just totally ignores us or thinks our concerns are some kind of joke, so hearing this from you really means a lot. Thanks!

First timer on this forum. My nephew was diagnosed with acute lymphocytic leukemia back on December 24, 2002. He went through absolute hell with treatments when he was three, but he beat it. He was finally supposed to start school this year now that he's seven. But then Monday rolled around for his routine checkup, and the labs showed the leukemia is back—even though it hasn't hit his blood counts yet. He’s in the hospital today, and it looks like he'll be heading toward a bone marrow transplant after this round of therapy. I just need to know if anyone here knows of even one case where a kid fully recovered after a relapse. All we ever hear are the grim prognoses. I want to help my sister, give her some actual hope and comfort, but right now, I'm flying blind.