Resources and support for families dealing with cancer and serious illness

Aaron Johnson29 said:Look, his doctor is Rajic, but she’s actually out on vacation right now, so Feminić is covering for her at the moment.

Honestly? My advice is just hang in there, Professor—stick with it even if you have to see them privately! Seriously, props to everyone involved, but believe me, he is the absolute gold standard over there. We actually got a written confirmation from some top-tier doctors in the States saying Doro did an incredible job. My own son had AML M7, and guess what? He’s starting first grade now. It's all going to be just fine.😉

Rachel Phillips9 said:My advice? Stick with the professor, and don't hesitate to seek private consultations if you have to! Seriously, kudos to everyone involved, but believe me, he’s the gold standard there. We actually received written confirmation from doctors at major US hospitals stating that Doro did an incredible job. My son had AML M7, and now he’s just starting first grade. It’s all going to be fine.😉

If the doctor has introduced a new protocol, his entire team is almost certainly following suit. These types of cases aren't handled in a vacuum; they go through multidisciplinary tumor boards where every specialist weighs in, meaning everyone stays updated and remains open to suggestions from their peers. For specialized treatments like this, the procedure is standardized—it's essentially the same across any top-tier, modern American clinic specializing in this field. They are already highly efficient and well-established in their workflows, for better or worse. On top of that, there's the psychological component: having a renowned name attached to your care provides a level of peace of mind that you just can't ignore.

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

Angela Wright said:If a doctor introduces a new protocol, his teams are almost certainly following suit. All cases get reviewed by a multidisciplinary board, so everyone stays in the loop and they're all open to suggestions from their colleagues. For stuff like this, there’s a standard procedure in place—it’s pretty much identical across any modern, high-tech hospital specializing in this field, and—luckily or unluckily—they’ve already got the system down pat. Plus, there's the whole psychological thing where having a big-name doctor gives you that extra layer of peace of mind.

Angela, look, we really thought it worked that way too, but man, was we wrong. There are massive discrepancies that sometimes mean absolutely nothing and other times... well, they mean life or death. I'm writing this from personal experience—I wasn't sure if I should even share this, but here's a little example for ya:
The discharge papers said one tablet of thioguanine daily... and Dr. Rajic was super insistent about it—like, "do NOT miss a dose or forget it under any circumstances" kind of insistent. Meanwhile, the blood work was a total disaster—30 clots—and there we were, just waiting for her to catch a break so we could bolt for the door at some "hour" of the night.
After five days of waiting and listening to Rajic... the professor finally gets back from his trip, takes one quick glance at the labs, and immediately goes, "WHAT ON EARTH IS THIS CHILD TAKING???" His take? Every kid is more than just a number on a chart or a statistic; everything has to be adjusted individually. He told me basically, "Don't just listen to whatever some resident or attending writes on a note every single time—call me instead." Otherwise, if things keep going this way, I might as well book a suite at the Salat hotel because my little girl won't be staying home for at least another year.
So, what did we do? We switched to a quarter dose of thioguanine every other day, basically adjusting it on the fly based on the lab results.
And that's just one tiny little detail....

Rachel Phillips9 said:Angela, we honestly thought it worked that way too, but nope. There are huge differences that sometimes mean absolutely nothing and other times they’re literally life or death. I’m writing this from personal experience—some parts were a bit hard for me to even type out—but here’s a little example;
The prescription was one tablet of thioguanine daily... Dr. Rajic was super insistent that we could under NO circumstances miss a dose or forget it... then her blood work becomes a total disaster—30 clots—and there we are just waiting for the kiddo to snap out of it a little so we can finally bolt for the door after a few "hours" at home
After five days of sitting there listening to Rajic... the professor got back from his trip and after just one glance at the labs, he goes, "WHAT ON EARTH IS THIS MOM FEEDING HER???" His take was that every child isn't just some number in a chart or a statistic, everything needs to be adjusted individually, and that I shouldn't just listen to whatever any random doctor on the floor tells me—I should call him every single time instead. Otherwise, if things keep going like this, I might as well just book an apartment at Salat because she won't be home for at least another year
So, we ended up doing a quarter dose of thioguanine every other day, basically adjusting it on the fly based on the lab results
And that’s just a tiny detail....

We actually made it home in about three days...

Aaron Johnson29 said:Thanks for letting me ask because I honestly have no clue who else to turn to. What’s really freaking us out is the whole "relapse" thing. If you happen to know, does a recurrence affect how successful a bone marrow transplant will be? It’s a huge relief that my sister had her second boy, so they were able to collect cord blood stem cells at birth. But we're just spiraling thinking—does it matter if the disease came back when it comes to the healing process after the transplant?

I don't think the relapse should mess with the transplant itself. How the disease behaves is just different for everyone—some people bounce back after a few rounds of chemo, some need a transplant, and for others, even that isn't a guarantee. Basically, chemo is meant to wipe out the bad cells, but there's always that tiny chance a few survivors are hiding somewhere... Once therapy finishes, they're suppressed, but if any are left, they start replicating again. That's why they don't just do one round of chemo; they go through full cycles to try and kill off as many as possible to reach a cure. When they get them under control, that's remission, but yeah, the risk of it coming back is always hovering there. Again, it's totally individual. That’s exactly why they do the transplant—to introduce healthy bone marrow and hopefully hit that total cure. It's awesome that you already have those stem cells ready, and seriously, it's great that he's holding up so well physically and mentally. I truly believe things will work out; 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 it's like over at Salat, we were at Mercury. Don't know about your experience, but the doctors and nurses at Mercury were honestly top-notch.

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.

Rachel Phillips9 said:Angela Wright, we all thought it worked that way, but it doesn't. There are massive discrepancies that sometimes mean absolutely nothing and other times they mean life or death. I’m writing this from personal experience—there were things I felt hesitant to share, but here’s a quick example;
The discharge instructions said one tablet of thioguanine daily... Dr. Rajic was incredibly insistent that we should never, under any circumstances, be late with the dose or forget it. Then the blood work comes back as a total disaster—30 clots—and we’re just sitting there waiting for her to find a tiny window of stability so we can make a run for it " After five days of waiting and listening to Rajic... the Professor finally got back from his trip. He took one glance at the results and immediately asked, "WHAT IS THIS MOTHER TAKING???" His response was basically that every child isn't just a number in a chart or a statistic; everything needs to be tailored individually. He told me not to listen to whatever some doctor on the ward writes down or says, and to call him directly every single time. Otherwise, if we kept going like this, I might as well book an apartment at the Marriott because my little girl won't be home for at least another year.
So, we switched to a quarter dose of thioguanine every other day, essentially adjusting it based on the lab results.
That’s just one small thing...

Look, to me, that behavior is completely unprofessional. These doctors are his colleagues; undermining someone else's expertise like that is just unfair. You have to realize that doctors are human beings and they make mistakes, and he isn't perfect either. My mother has a brain tumor and was on Temodal. Generally speaking, everyone receives Temodal, and there’s an official protocol, but it’s subject to "maneuvering," so to speak, depending on a doctor's specific experience. For instance, someone else might not receive Temodal the same way my mother received it at Mayo Clinic because her oncologist felt her specific method was the best possible approach. From the time she was in Lilac, Mom was on Temodal, but under a different protocol; then Vpava's husband received it differently, even though he was treated by the same oncologist treating my mom. It’s exactly like you described: it’s about the individualized approach. These disagreements regarding therapy—where a doctor goes against their own colleagues—are supposed to be handled during board meetings, without patients getting caught in the middle. Acting this way toward a patient is terrible because it erodes the credibility of the healthcare system and the doctors, which is already struggling enough with bureaucracy. In medicine, 1+1 doesn't always equal 2, and that means a different treatment approach doesn't automatically mean it's wrong or less effective than what someone else, like this highly regarded professor, is doing.
Like I said before, it all comes down to trust and a sense of security. Based on my experience, I wouldn't feel comfortable approaching that man precisely because of that kind of behavior. But truly, it's individual. With cancer, nothing is ever certain. That's just the nature of the disease.

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.

Aaron Johnson29 said:The scans show 97% involvement, so they're moving fast—setting up a catheter and starting chemo immediately. Depending on how his body handles it, he’ll likely be in treatment for about two years.

He's going to pull through, just watch. You just have to keep pushing forward with courage. He's in excellent hands this time around, and they're going to wipe this thing out completely.
Give my love to the little angel, and tell them I'm thinking of you both.😘

Aaron Johnson29 said:They’re seeing 97% involvement, and they said they’re going to put in a catheter and start chemo right away. Looks like treatment could drag on for up to two years depending on how he handles it.

He’s gonna be fine. Such a little fighter. Just stay close to him and give him all the love—I'm sure it's tough on the poor guy, especially having to deal with those sterile hospital rooms. Sending big hugs 😘.

Just wanted to mention (in case you haven't seen it yet) that if you search "leukemia" on Google, the Leukemia & Lymphoma Society page pops up. It's nothing crazy, but there's some info on the disease and how things get treated just to give you something to read through if you're looking for details.

Thanks.

Angela Wright said:Look, if you ask me, his behavior is totally unprofessional—like, seriously unpro. These doctors are colleagues who work together, so undermining someone else's expertise like that is just... unfer. You have to remember that doctors are humans too, and they can mess up, just like anyone else isn't perfect. My mom has a brain tumor and she’s been on Temodal. Basically, everyone gets Temodal, and while there's an official protocol, it’s subject to all kinds of maneuvering, if you know what I mean, depending on the doctor's specific experience. So, someone else might not receive Temodal the exact way my mom received hers at Mayo Clinic, simply because her oncologist felt that particular method was the absolute best way to go. From Lilac, Mom was on Temodal but under a different protocol, and then even with Vpava, my husband’s experience was different, even though it was the same oncologist treating my mom. It’s exactly like you wrote—it’s about personalized care. These disagreements regarding a therapy one doctor presents versus their colleagues are usually hashed out in tumor board meetings behind closed doors, without involving patients. It’s honestly terrible to approach a patient that way; it just erodes the credibility of the healthcare system and doctors, which is already shaky enough due to all the bureaucracy. In medicine, 1+1 doesn't always equal 2, so just because someone’s approach is different from what this highly esteemed professor does, it doesn't automatically mean they're wrong or less effective.
Like I said before, it really comes down to trust and feeling secure. Based on my own experience, I wouldn't feel confident approaching that guy precisely because of how he acts. But hey, that's individual. When it comes to cancer, nothing is ever certain. That's just the nature of the beast.

I totally get where you're coming from and you're right, but believe me, you start thinking these people are just plain crazy... mostly because some of the doctors on that unit are so lost and disorganized. Just imagine... first, they do the HLA typing and say—according to her—that none of the parents are a match. Meanwhile, I’m out here searching the global bone marrow database... they tell me if we don't get a transplant within a year, he'll definitely be six feet under... naturally, the result is negative, no donor found... and I swear, when I heard that, I thought I was going to die right then and there. After a week of keeping things dark so the little guy wouldn't get suspicious, the doctor calls me urgently and tells me that—WAIT FOR IT—the FATHER is actually a compatible donor... we celebrated like crazy because we got a second chance! And in the meantime, they're giving me this same old story about how tragic it would be if there were no donor because it's high-risk leukemia... THREE DAYS later, the doctor calls me into her office. I'm sitting there hoping she'll tell me what meds the dad needs to take or how to prepare... instead, she tells me the whole thing was just a "dark joke" played on us. She says, "MOM, A MISTAKE HAPPENED... A MISTAKE!!!" What kind of mistake??? They mixed up my child with another kid with the same name on the ward!!! Is that even normal??? (Honestly, I don't even know if I'm more angry or just disappointed when I look back on it now) and then she tries to comfort me by saying it's "not a big deal." Suddenly, it's not a big deal.
Then, after a while, SHE asks ME! Like, she wants ME to decide whether we should do an autologous transplant or not... I mean, what am I, a medical student? How am I supposed to decide that?? And to top it off, she drops the hint that whatever we choose, we'll most likely lose him anyway.
....well, I didn't have an answer for that... the professor told me he wasn't sure what was best either, but he'd send the records over to Mayo Clinic and they would figure out the smartest, most desirable solution... of course, they didn't mention the autotrans.
So I'm asking you, who's the crazy one here?
I know some things aren't exactly perfect, but honestly, they meant the world to us

Rachel Phillips9 said:I know some things aren't right, but they meant a lot to us.

That’s exactly what I was getting at when I mentioned how certain things hit our personal sense of trust and security on an individual level.
Everything you went through is just a snapshot of the system itself. This is the healthcare we have, and honestly, things are nowhere near as crazy as they seem. We’re looking at what feels like an epidemic of cancer over the last decade or so, yet the people who are supposed to be our lifeline are stretched down to a skeleton crew. They’re working in terrible conditions, pulling unpaid overtime constantly, and they're often so burnt out that they make these kinds of banal mistakes—like identity mix-ups—that wouldn't happen under normal circumstances. Still, thank God they caught their error in time and actually owned up to it; in my experience, people usually try to cover their tracks.
Look, the reality is the same whether you're at Mayo Clinic, Johns Hopkins, Cleveland Clinic, or any hospital from Seattle to Miami—it’s just how it is. But we have to navigate through it because there isn't another healthcare system coming to save us. Certain things remain completely out of reach for regular folks like us, even in supposedly "developed" countries, yet here, every child gets basic access. Just imagine a mother in the US, someone in your same position, who accidentally misses one single insurance premium after paying for years, and suddenly they refuse to treat her child who is in the exact same condition yours is in. Just think about that; that kind of thing is a daily reality in that environment.
Life is unfair. When you're facing the fact that your child is this sick, everything else feels as flat and insignificant as the Midwest. You're forced to rapidly educate yourself, read up, hunt for info, and essentially stay one step ahead of the doctors, the medicine, and the advancing cancer. Along the way, a person gets hardened by these outbursts; you become cynical, and you focus solely on your child, your mother, or whoever it is, and nothing matters but their recovery.

Honestly, after what you've been through, I don't think there is anything left in this life that could break you or that you couldn't overcome. You gained a certain kind of strength through that horrific experience. Use it. 🙂

I really hope everything is okay with the little one now.😳

[

Hopefully everything is going okay with the little guy now.😳

For now, things are looking up. We’re actually heading to his next checkup soon—and get this—without any meds (finally!). He’s 8 years old now, too, so he’ll finally be starting first grade like all the other kids out there.
Honestly, Angela Wright, thank you sooooo much for starting this thread. I swear, it wasn't until tonight that it really hit me how much easier everything feels when you can just say things out loud and actually feel them... I don't know, I think my son's illness has slowly turned me into some kind of beast? Because, believe me, being a single mom in this situation... I've had to fight for absolutely everything.
THANK YOU SO MUCH... It's just so much easier when you aren't doing this alone.

Anyone here actually dealt with AML M7 before?

Angela Wright, I am 100% with you on how our healthcare system is set up... Especially since there just aren't enough people on staff, particularly when dealing with cancer. I just wanted to chime in regarding the doctors. We were treated over at Mercury in the hematology department, and honestly, the doctors and nurses there were amazing. Obviously, they’re human and have their ups and downs, but they were seriously professional. You can actually trust them; I never felt weird about stopping one of the doctors to ask a question or whatever. I even know for a fact they consulted with specialists from the US for some of the treatment plans—they clearly stay in the loop with top-tier experts. Plus, they always had other pros nearby, like a psychiatrist who would drop by every couple of days to check on people stuck in the sterile wards. Sure, they’re exhausted and pulling overtime, but we never dealt with any massive screw-ups like what happened to Rachel Phillips9. Which, frankly, totally shocked me because we're talking about typing here?! That should be handled with insane precision and oversight, because, you know, someone's life is literally on the line!

I recently stumbled upon a little trick that’s supposedly quite effective, so I thought I’d share it here with anyone who might find it useful. Hopefully, it offers some relief to someone navigating this journey.

Since chemotherapy can really take a toll on your immune system, leading to fungal infections in the mouth and throat, or even things like fistulas and other inflammatory issues, there's a technique that might help. Once a day, try taking a small sip of raw oil—ideally extra virgin olive oil—and swish it around your mouth until it turns white and frothy. Just make sure you keep swishing for at least three minutes.

🙂

I’ve had to cut my vacation short and rush back home because my mother’s condition took a turn after her third round of chemo at the hospital. It was brutal; she was vomiting incessantly and just couldn't stop spitting up excess saliva and mucus. The vomiting has finally subsided slightly, but she’s still dealing with this constant, heavy production of phlegm and saliva.
She hasn't been able to keep a single thing down for nine days now, so she's entirely dependent on an IV drip. Her lab results are actually within the normal range. However, since she’s had her entire stomach, gallbladder, and spleen removed, we are planning to move forward with either an MRI or a CT scan. She already had X-rays to check her surgical sutures and intestinal alignment following the operation, and everything looked fine on that front. I find myself wondering: is it possible that all of this is a direct side effect of the chemotherapy? This was only her third cycle, and this specific reaction didn't hit until about ten days in. Has anyone else dealt with this? Does anyone have experience with such a delayed, intense reaction? Please, if you have any advice, I am desperate for it!

I’ve found that when dealing with nausea during chemotherapy, a little bit of fresh ginger juice can work wonders—you just grate it and squeeze out the liquid, then stir about a tablespoon into every cup of water or tea she drinks. Since her stomach was removed, though, it would be wise to run it by her doctors first, even if I personally don't see any reason why it wouldn't be okay.

Ginger is quite effective at settling the stomach and easing cramps, and it acts as a powerful antioxidant. It might also help boost her circulation, which is always a plus when someone is spending a lot of time resting in bed.