Little Leona is dreaming an angelic dream

Prompted by the topic on the GoFundMe Appeal: fundraising for little Leona’s treatment and today's news article A family left without Medicare support—fighting to save little Leona , plus the heartbreaking reality that time is running out for little Leona, I’m starting this thread here. I truly believe the people who frequent this forum will want to step up and help little Leona.

"Leona Zajšek is just two years old, and until very recently, she was such a happy, bubbly child. She has juvenile myelomonocytic leukemia, a rare form of childhood cancer where standard chemotherapy just doesn't work.

The St. Jude Children's Research Hospital (Germany) specializes in treating these kinds of diseases and they are ready to admit the little girl and her parents for treatment on June 8, 2009. However, the medical costs are estimated at 200,000 euros.

Tragically, Medicare has officially denied the parents' request for coverage. They are being forced to shoulder the entire cost of treatment themselves, which is simply impossible without outside help.

For anyone with the heart or the means to help Leona see her third, fourth, and many more birthdays, you can make a donation directly to the bank account
JPMorgan Chase, account no. 2360000-3114646557 (reference no. 3114646557)."

Source:

EDIT:
You can also donate via telephone. By calling 060 888 300, you can donate $1.25 if you are calling from a landline, or $1.75 if you are calling from a mobile phone. Sales tax is included in the call rates.

For international donations:
IBANHR 6823600003224716810
SWIFT CODE ZABAHR2X

northernraven49 said:Today, Danny messaged me:

It’s been an absolutely brutal day. We don't even have our own room; they're treating us as outpatients, probably until Wednesday, so we spent most of today hunkered down doing tests, then just waiting around in hallways and the day clinic.
We’re still without Purinetol or any actual therapy for the JMM L. The doctor says her white blood cell count is still at 6 (??). They took a massive amount of blood from her today—eight tubes, some small, some large—for various bacterial cultures, and then they had to sedate her again (that’s four times since we got here!) just to perform a bone marrow biopsy.
So, today has been a total wash.

The whole day was just a complete mess. We were waiting for Lana to get her blood drawn too, so they didn't even get a decent breakfast or lunch. But, whatever, I suppose things will settle down soon. They are trying their best to get everything done as quickly as possible.
I won't complain too much; it's better than being stuck inside the hospital ward.
We still haven't heard anything regarding the Noonan diagnosis; we'll probably find out tomorrow. We have a meeting scheduled for tomorrow with a whole panel of doctors and the head specialist, right under Niermayer. Honestly, I'm getting chills just thinking about what I'm going to hear. I am absolutely terrified.
By the way, I asked one of the doctors today about our diagnosis, the results, the prognosis, and the risks. According to her, they aren't overly worried about infections following the transplant. What worries them most is the chance of a relapse—but once that happens, he says the chances of it coming back are slim. We'll just have to wait and see what Mrs. Strahm has to tell us tomorrow.
Anyway, that's the short version of our day.

...

This reminds me of the tragic fate of Martina Piric—there are so many stories just like hers. In her case, people raised $200,000 through a GoFundMe. However, Medicare refused to cover the costs because they judged the chances of success to be too slim, arguing those funds could be better used to save children with higher survival rates.
It is a brutal dilemma. On one hand, as a parent, you have to do everything humanly possible to save your child. On the other hand, when people donate to individual causes, they are essentially stepping into the role of deciding who lives and who dies—a decision usually left to doctors.
Personally, I tend to trust the medical experts more; I prefer contributing to the healthcare system rather than sending money to private accounts where emotional appeals are used to save a loved one. Still, every time I read a story like this, I am reminded of how much injustice exists in our world.
Good luck to Leon, but I fear we might see history repeat itself if the doctors' assessments prove correct and the outcome ends up like Martina's. 😢

If everyone looked at life through such a pessimistic lens, half of us wouldn't even be here...

Personally, I am absolutely livid with our entire healthcare system... from the Secretary of Health down to the lowest-level clerk... I don't trust a single soul in it... it feels like there's money available, but only if you happen to be one of their chosen people...

The fact remains that you pay into this system... I mean, is there really any other choice? You have to pay, whether you like it or not... and then, the moment you actually need it, the system turns its back on you for things even smaller than this...
I’ve dealt with this kind of denial within my own family => the excuse they gave us was that certain medication was reserved for free use for addicts and alcoholics 😕... yet for us, it was being used to treat cancer... how much it actually helped => nobody can say for sure... the biggest paradox is that we filed a claim with the Supreme Court for a portion of the funds, and truth be told, that part was finally returned to us after seven long years... now we’re just waiting on the rest of the claims...

And as for Medicare deciding the chances were slim... I mean, hello? 😕... as if Medicare is some kind of psychic clairvoyant or something...

It is obvious to me that you have never (thank God for that) found yourself in a situation like this or anything remotely similar... honestly, you’d have to be a pretty cold-hearted person not to be moved, even just a little, by someone else's pain and helplessness....

Besides, the whole point of this discussion isn't to weigh the "profitability" of an investment, a donation, or a bit of help... we are talking about a precious human life here...

I contributed what I possibly could... everyone should just act according to their own conscience and whatever their means allow.

I am afraid there has been a misunderstanding.
When I mentioned contributing to the system, I wasn't referring to paying taxes to Medicare. I meant donating roughly $100 a month to organizations like Caritas or UNICEF—groups that maintain operating costs below 15% and employ experts to ensure donations are used with maximum efficiency.
Reacting to emotionally charged narratives can be counterproductive. Of course, this story moved me (which I stated explicitly; I am unsure why you concluded I was "cold," though I have seen similar cases in my own community, but there is no point in dwelling on that), but the idea that only children whose stories parents manage to pitch to the media "survive" is, in my view, often damaging. I cited Martina as an example, but there are countless others. They raised $200,000—funds that professionals could have deployed far more effectively. The issue is the lack of a structured system, which is why these situations occur. In a functional, centralized system, a single fundraising campaign like this would likely never even hit the news.
As for why people donate to these "private" accounts, you probably know the answer better than anyone. Believe me, both you and I are equally touched by this story; however, I have decided to leave the decision of "who lives and who dies" to those I believe are more competent than myself to make such calls.

And I am not being a pessimist at all; I have no idea why you reached that conclusion. 🤷
I am simply stating that I believe it is more effective to channel funds through a "system."
I respect every charitable contribution, even if it is "individual" or done only once a year. The priority is helping people in need according to one's own means. Therefore, I hold no resentment toward you or the parents. If I were in their shoes, I would likely do the exact same thing—what else is left for them to do?

On the other hand, I have a friend who will comfortably spend $200 on a pair of shoes, then open an email like this and make a small donation just to clear her conscience, only to tell everyone about how she helped this girl or that girl. Many people don't truly understand what it means to help those in need; many don't do it sincerely (which isn't strictly important), and many don't even know how to help.

The reality is that the wealthy live longer than the poor, and I do not believe that will ever change, whether you label me a pessimist or not. 🙂.

Look, I really didn't mean to offend you...

I’ve been following this little one's entire battle on GoFundMe from the very beginning... You see all sorts of heartbreaking stories online, but this one? This one hit me right where it hurts... Honestly, I usually try to avoid opening these kinds of topics at all, but I just couldn't stay away this time...

It's not my place to play God and decide who gets to live or who doesn't... But if my own hard-earned money can help Person X live a better, more meaningful life, then why wouldn't I? 👍 ...

See, I'm one of those people who would much rather wire money directly to someone's personal bank account than send it to some massive organization. Why? Because that way, I actually know exactly who I'm helping. I don't know, I just don't have much faith in these giant, impersonal systems... I'll buy UNICEF postcards or donate to kids with cerebral palsy, sure, but that's about the extent of it for me.

I react when a story touches my heart, though not always... I just help whenever and however much I possibly can.

northernraven49 said:We were bouncing between hospitals until nearly five this afternoon—hearing tests at one place, then she had to be at a third one to talk to the anesthesiologist about getting her central line placed (likely this coming Monday).
The final deadline for the transplant is July 7th, though that’s the absolute latest; it could happen sooner. They seemed to be rushing through all the testing, acting like the transplant is happening in a few days if her condition takes a turn for the worse. But since she's stable for now, they'll wait—they want that cough to settle down first. Apparently, after the central line goes in, it's better to take a little breather before starting chemo (they said at least two days, though ten would be ideal if we can afford the wait) just to minimize any risk of infection.
So, we play the waiting game.

She still isn't receiving any chemotherapy, no Purinetol, nothing—not even regular blood counts yet. On Friday, everything looked perfect, aside from her iron being slightly low, which is pretty standard for her, but everything else was great; white cell count was at 6.
Honestly, I don't know what to believe. Part of me wishes they’d just draw blood a few more times just to be safe, but I suppose they know best.

Yesterday, she was just... off. She was moody, acting out, and I started getting really worried. But today? Today is a completely different story. The doctor actually asked me, "Is she always this energetic?" She didn't sit still for a single second! And her speech is coming along beautifully. She repeats everything she hears—English, German—it's all there. Her little "by and cus" phrases are our favorite thing right now. I tried to sit down with her in the playroom today to play, and she actually shooed me away! She was like, "No, Mommy, go away, little kids are playing here."
Or even better, when she plays, she starts listing everyone off—Dad, sister, Busac. So you know, according to her, I'm just "Busac," not Mom.
Anyway, she is enough to drive you absolutely insane. You know how it is with two-year-olds.

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northernraven49 said:
Tickets are officially on sale

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Thomas Fowler84 said:This reminds me of the tragic fate of Martina Piric—there are so many stories just like hers. In her case, people raised $200,000 through a GoFundMe. However, Medicare refused to cover the costs because they judged the chances of success to be too slim, arguing those funds could be better used to save children with higher survival rates.
It is a brutal dilemma. On one hand, as a parent, you have to do everything humanly possible to save your child. On the other hand, when people donate to individual causes, they are essentially stepping into the role of deciding who lives and who dies—a decision usually left to doctors.
Personally, I tend to trust the medical experts more; I prefer contributing to the healthcare system rather than sending money to private accounts where emotional appeals are used to save a loved one. Still, every time I read a story like this, I am reminded of how much injustice exists in our world.
Good luck to Leon, but I fear we might see history repeat itself if the doctors' assessments prove correct and the outcome ends up like Martina's. 😢

Her situation was—to put it bluntly—a total failure of the system; Medicare essentially decided right out of the gate that they wouldn't cover her treatment either here or abroad, basically telling her to just go home and die. Eventually, a GoFundMe kicked off, money was raised over a period of time, and she managed to get to Padua. But there, during the initial screening, they discovered a third tumor—quite advanced and inoperable—which our local doctors had completely missed! She was declining much faster than the therapy could even work; she actually became so weak that they had to send her home for a break because she couldn't handle the treatment anymore. About ten days later, she passed away. And then—get this—just a few days after her death, Medicare finally sent over a decision saying they *would* have paid for the treatment after all. 🤮

Her family (and I know this personally, 100%) donated a special, high-end hospital bed—it cost at least $2,000—which they kept at home for another sick little girl to use after Martina passed away.

Medicare is the real issue here; they have the funds, but they choose to play these bureaucratic games instead.

northernraven49 said:They finally put the central catheter in today.
I got two different messages about it. One from Daniela: "The little one handled it way better than I did—I almost fainted myself just seeing all those tubes coming out of her."
Then there was the message from Damir: "God bless you, they spent two hours getting that catheter in, then an hour waking up, and another hour in intensive care. When they finally brought her back to the room, she was just screaming 'meat, meat, meat!'"

northernraven49 said:Let's get moving (meaning, let's go to the concert)!
http://www.javno.com/home/hr-scena/p...ramirez_267047

This part really hits home for me:
"Anyone willing to help this little girl is welcome to join us at the Culture Factory on June 26th at 9 PM," where a massive lineup of big names from the US music scene
will be performing for her.

...

Nicholas Turner said:Her situation was—to put it bluntly—a total failure of the system; Medicare essentially decided right out of the gate that they wouldn't cover her treatment either here or abroad, basically telling her to just go home and die. Eventually, a GoFundMe kicked off, money was raised over a period of time, and she managed to get to Padua. But there, during the initial screening, they discovered a third tumor—quite advanced and inoperable—which our local doctors had completely missed! She was declining much faster than the therapy could even work; she actually became so weak that they had to send her home for a break because she couldn't handle the treatment anymore. About ten days later, she passed away. And then—get this—just a few days after her death, Medicare finally sent over a decision saying they *would* have paid for the treatment after all. 🤮

Her family (and I know this personally, 100%) donated a special, high-end hospital bed—it cost at least $2,000—which they kept at home for another sick little girl to use after Martina passed away.

Medicare is the real issue here; they have the funds, but they choose to play these bureaucratic games instead.

Perhaps you misunderstood my point.
I am not trying to defend Medicare. My skepticism lies with these media-driven fundraisers. It is troubling when people require a highly emotional narrative just to find the motivation to help others. It is like looking at a single drop of rain while ignoring the storm. In reality, there are tens of thousands of such cases every single day. Perhaps it is better for these people to remain in their bubble, shielded from the harsh realities of our world.

northernraven49 said:Today has been an absolute disaster for me, and honestly, I’m just spiraling for several different reasons.

1. I got a letter from Daniela and I’ve been a total wreck, crying since the second I opened it.
2. My little one is heading to the beach tomorrow (call me as possessive as I want, I don't care), and I have no idea how I'm going to cope without him nearby—I can't stop the tears.
3. Lana acted out tonight, and I don't even know what else to say, I'm just exhausted and weeping over everything.

Here is the full letter:

First off, let's talk money—Kosor sat down with her $30,000, which basically means we finally have a million!
I can't wrap my head around how everything has turned into this or how far we've come (and I'm not just talking about the cash). If things end on a good note, I truly believe both our lives will be filled with wonderful new people. That thought alone makes me so happy.

Of course, I'm less thrilled that it all came to this because of her illness, and because for months now, we've been practically begging for money from everyone, friends and strangers alike. I have to admit, it feels incredibly humiliating. On top of that, I am absolutely livid at our government and the doctor involved, because she has a fundamental RIGHT to this treatment. I know you already know all this, but since you're posting on the forum...

I hope everything regarding the concert is sorted out and that you all have a blast together this Friday. It's such a shame we won't be there.

As for updates on our end, we had a second consultation with the doctors today. This time, it was all about the medications they'll be using and the side effects. We sat there for an hour and a half while they explained every single drug—why it's being given and exactly what it does to you. Not to mention, the list of side effects is endless.
One of them is that she won't be able to have children. I'd read about it before, but I thought it was more of a "this might happen" kind of thing... but the way he said it, it's definitive. It shook me, I'll admit, though I know it doesn't matter right now; we just need to get through this first. Then there are the other issues involving the lungs, liver, kidneys, and potential seizures. It's a whole laundry list of horrors. But, as I heard, I'll just try to push it out of my mind until we actually have to deal with it. To make matters worse, the chemotherapy is going to ravage her entire digestive tract, starting from the mouth downwards, so she won't be able to eat anything for at least two months. She's going to have plenty to deal with, not that I want to list it all. Basically, it's going to be "fun."

The one silver lining in our situation is Lana—specifically, with related donors, the complications from GvHD are somewhat milder, so maybe we'll escape that particular nightmare. Everything else, however, is still a complete gamble. We'll just have to wait and see.
So, those are the updates from us.

Catch you tomorrow—if you can even find me through the dark circles under my eyes from crying all day.

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northernraven49 said:The photos from Freiburg just arrived—taken right before the chemotherapy starts. They are absolutely precious.

http://photos-e.ak.fbcdn.net/hphotos..._1390155_n.jpg

I can't access external links or view images directly. If you paste the text from the post or describe what's happening in the photo, I'll get right to work rewriting it in that specific, high-energy, ranty style you're looking for!

...

How is Leona doing?
We’re hoping everything stays on track. Hang in there. 🙂

Best wishes from Istria 👍

northernraven49 said:We had another sit-down with the doctor today. Honestly, every single time they announce they want to talk to both of us, I feel like I need three Xanax just to keep my cool. But, there wasn't anything new, and nothing truly catastrophic.
Aside from the goat, everything else is pretty much what we expected—within the normal range, and nothing to panic about just yet. We’re still dealing with a mountain of meds for the kidneys, blood pressure, and whatever else... The temperature hasn't topped 100.4 lately, so we're praying that's a sign things are finally starting to stabilize.

...

northernraven49 said:Here is the update for today:

White blood cell count is at 4, platelets are down to 64k.

She’s a little more alert, which means there was a window where she actually managed to sit up in bed, talk to us and her sister, and even finish half a bowl of food. We did have some issues with her digestion—she hasn't had a bowel movement in four days—and now she's started coughing. We'll see what happens tomorrow; I'm just praying it's nothing serious.
My stomach felt a bit bloated tonight, too. I really hope I'm just imagining things and that it isn't her liver or spleen swelling up.
The lead doctor is coming back tomorrow. She hasn't seen her during this absolute nightmare phase with her skin, so we'll see what her take is.
Temperature hit 38°C.
We've stopped the pain meds for now; let's see if we can manage without them.

....

Thomas Fowler84 said:This reminds me of the tragic fate of Martina Piric—there are so many stories just like hers. In her case, people raised $200,000 through a GoFundMe. However, Medicare refused to cover the costs because they judged the chances of success to be too slim, arguing those funds could be better used to save children with higher survival rates.
It is a brutal dilemma. On one hand, as a parent, you have to do everything humanly possible to save your child. On the other hand, when people donate to individual causes, they are essentially stepping into the role of deciding who lives and who dies—a decision usually left to doctors.
Personally, I tend to trust the medical experts more; I prefer contributing to the healthcare system rather than sending money to private accounts where emotional appeals are used to save a loved one. Still, every time I read a story like this, I am reminded of how much injustice exists in our world.
Good luck to Leon, but I fear we might see history repeat itself if the doctors' assessments prove correct and the outcome ends up like Martina's. 😢

Don't worry, she is NOT going to end up that way. The doctors actually got the diagnosis right this time; it’s just that, unfortunately, they haven't managed to cure a single child with JMML here in the States.
An Austrian team saved one little American boy, and at this rate, the doctors in Germany will be the ones to save our Leona.
I asked Daniel how my little sunshine is doing and how my big sunshine is doing, and he told me:
the little sunshine looks slightly better in certain areas.
The head doctor said she’s going to monitor her closely now to see whether
this new therapy has started to work or if things are about to take another turn for the worse.
(It’s been a bit of a roller coaster—feeling a little better, then getting worse two days later). They have
some other medications being prepared in case things decline again, but
they are being much more aggressive with their approach and plan to wait a bit before jumping straight in
with them.
white blood cell count is 5k, platelets at 64.
Temperature is hitting 100.2.
She ate a little bit of baby food; otherwise, it's business as usual.
As for the big sunshine, she's enjoying life to the fullest.
To her, this whole thing feels like some grand adventure, and honestly, thank God she sees it that way.
School wrapped up on July 31st, and now there's a massive schedule of activities for
the kids staying in town. Even the ladies at the daycare center are constantly
taking them out on field trips. Just imagine, tomorrow they're heading to Europa-Park. It's something
like Disneyland, though the locals here love to brag that it's actually better than
Disneyland.

So, for anyone following along, here is the reality of where Leona stands:
She survived heavy-duty chemotherapy (which was a huge gamble given how tiny she is), she survived the transplant (which isn't exactly rocket science—you could probably pull off a similar procedure at a local vet clinic), and she is currently navigating the hardest part: the post-transplant period. She is fighting through the side effects quite successfully, thanks largely to the immense expertise of the medical team in Germany.
There was this prominent specialist back home who claimed he could perform transplants here (and he could, there's no reason why he couldn't), but when asked if he knew how to manage the complications that arise after a transplant, he admitted it wasn't his specialty and he didn't know. That was the honest truth, yet his opinion was used by Medicare as the deciding factor to insist the girl be treated here in the US instead...

Thomas Fowler84 said:I am afraid there has been a misunderstanding.
When I mentioned contributing to the system, I wasn't referring to paying taxes to Medicare. I meant donating roughly $100 a month to organizations like Caritas or UNICEF—groups that maintain operating costs below 15% and employ experts to ensure donations are used with maximum efficiency.
Reacting to emotionally charged narratives can be counterproductive. Of course, this story moved me (which I stated explicitly; I am unsure why you concluded I was "cold," though I have seen similar cases in my own community, but there is no point in dwelling on that), but the idea that only children whose stories parents manage to pitch to the media "survive" is, in my view, often damaging. I cited Martina as an example, but there are countless others. They raised $200,000—funds that professionals could have deployed far more effectively. The issue is the lack of a structured system, which is why these situations occur. In a functional, centralized system, a single fundraising campaign like this would likely never even hit the news.
As for why people donate to these "private" accounts, you probably know the answer better than anyone. Believe me, both you and I are equally touched by this story; however, I have decided to leave the decision of "who lives and who dies" to those I believe are more competent than myself to make such calls.

And I am not being a pessimist at all; I have no idea why you reached that conclusion. 🤷
I am simply stating that I believe it is more effective to channel funds through a "system."
I respect every charitable contribution, even if it is "individual" or done only once a year. The priority is helping people in need according to one's own means. Therefore, I hold no resentment toward you or the parents. If I were in their shoes, I would likely do the exact same thing—what else is left for them to do?

On the other hand, I have a friend who will comfortably spend $200 on a pair of shoes, then open an email like this and make a small donation just to clear her conscience, only to tell everyone about how she helped this girl or that girl. Many people don't truly understand what it means to help those in need; many don't do it sincerely (which isn't strictly important), and many don't even know how to help.

The reality is that the wealthy live longer than the poor, and I do not believe that will ever change, whether you label me a pessimist or not. 🙂.

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