Posts by Rachel Phillips9

👍 👍 So, I’m currently working through level 2 Reiki... and honestly? I am loving it. Like, seriously. I’d probably be even further along if I wasn't such a total couch potato when it comes to actually doing the "inner work"—you know how it is, right? Anyway—my son was actually working with some firefighters back in the day, and I have to say, the energy work they used really helped him navigate his illness. It made a massive difference. It’s totally worth it 👍 especially if you can just commit to getting through at least level 1 first

Hey everyone, it’s been a minute since I’ve checked in here... please don't judge, I'm just trying my hardest to block out all the absolute garbage from the last two years. We had a routine checkup at Mayo Clinic today and thank God everything looks good... but man, I was totally crushed when I heard news about yet another little soul leaving this world... up until now, I’ve been able to swallow the bitterness and just keep moving, but this one really hit me hard. This is actually the second time someone close to us has ended up like this... it was this little boy, the brother of a girl who went to preschool with my son. We hung out a bit back then, and after a long break, we were finally getting to know each other properly—and then, boom, the ICU. I’m reaching out because I honestly don't know what to say to an 8-year-old right now. How do you even approach that? Especially when this is the 14th friend he's lost.
On top of that, he’s started having these mental blocks lately. School-wise, he’s doing great—total A student—but sometimes he just... freezes. He goes completely silent and won't react to anything for maybe 2 to 5 seconds, especially after he’s been physically active. The doctor mentioned it could be a side effect from the transplant, but it’s still too early to get specific details since it’s only been about a year and a half since the procedure. Has anyone else dealt with stuff like this? Sending love to everyone, fingers crossed.

Anyone here actually dealt with AML M7 before?

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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.

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: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...

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....

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:I honestly think physical health matters, sure, but man—the mental state is even bigger. It’s so important that they don't feel this crushing weight of "how?" or "what if?" or "where do we go from here?" You really don't want them thinking you aren't 100% confident that everything is going to turn out fine. We actually still check in regularly with Professor Horse—I have so much respect for him and Bilic. By the way, what was the diagnosis again? Was it AML M7 or ALL?

My bad, totally missed this!!

Aaron Johnson29 said:They’re at Salisbury. Honestly, I’m just crossing my fingers that my nephew stays physically strong through this—and more importantly, that he’s handling the mental side okay. He’s a smart little guy, just like his auntie.

I really think physical strength matters, sure, but man, the mental game is even bigger. It's crucial that he doesn't feel this weight—you know, those "how?" and "what if?" questions—or start thinking that YOU guys aren't totally confident everything is going to work out. We're still seeing Professor Horse regularly, and honestly, I have so much respect for him and Bilic. So, what was the actual diagnosis? Was it AML or ALL?

Aaron Johnson29 said:Thanks for letting me ask because I honestly wouldn't even know who else to turn to. What’s really spooked us is the whole idea of the disease coming back—so if you happen to know, does that change anything regarding how successful a bone marrow transplant will be? I guess it’s a silver lining that my sister had her second boy, so they were able to collect stem cells from his umbilical cord at birth. But we're just sitting here worrying... is there actually a difference in the healing process when you're doing a transplant because the illness returned?

Hey there, Aaron Johnson29. Look, based on what I've seen, I can tell you with total confidence that you guys have a really solid shot at everything turning out okay. Honestly, just having those stem cells ready to go already feels like the problem is about 45% solved. I knew this one little guy who was being treated at the exact same time as my son (about a year ago), and he actually had a relapse too. After the standard therapy, he got his sister's stem cells, and now? He's just a normal kid heading into second grade with zero issues.
Which hospital is your nephew at?👍

Hey there
Look, I couldn't just sit here and not say something after reading through everything on this board. I’m a mom who went through the absolute ringer—chemo, radiation, transplants—all alongside my little boy, who was only about six at the time... I know firsthand how much even the tiniest bit of advice or support actually means. I know the gut-wrenching pain and the sadness, but also that weird, intense strength you find in yourself when you're fighting these kinds of diagnoses, whether it's happening to you or someone you love.
It’s almost been two years since we got the diagnosis and THANK God, everything is okay now.
We’re just doing regular checkups at this point, and that's really it. If I can help anyone out with any advice at all, please, don't hesitate to reach out... the diagnosis was ACUTE NEUROIDAL LEUKEMIA M7
WITH AN AUTOTRANSPLANT
Since this is such an incredibly rare diagnosis, if there is anyone else out there dealing with the exact same thing, PLEASE, I'm begging you, reach out. Even if it's just to tell me what your results look like and how good they are.

Thanks to everyone for this forum, it truly means a lot. I.G.