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Little Leona is dreaming an angelic dream

Started by Kimberly Nguyen · · 👁 6 views · 53 replies

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Participants Kimberly NguyenThomas Fowler84Nicholas TurnerJeffrey Sullivan8northernraven49William Murphy7Peter RogersOlivia Cooper272boldrider53mellowfox56granitepilot2Melissa Mendoza75Andrew Martin13
Kimberly Nguyen Kimberly Nguyen RegularOP
543 messages
joined Jul 2009
#41 ·
northernraven49 said:Nothing major happening, just a lot of coughing. They took lung scans and everything looks fine.

Yesterday this rash popped up out of nowhere, and then vanished before we could even figure out what caused it. Today? It’s back again...
They stopped the skin therapy, so now we’re just sitting here waiting to see if things take a turn for the worse or if we can actually manage without it.
Everything else is pretty much the same, except all her fingernails have fallen off.
And honestly, it looks absolutely horrific.
The doctors warned us this might happen, but I really didn't expect it this soon—I thought it would be later, maybe after chemo, not on day 55...

Even though she's on slightly fewer medications than at the start, it's still an overwhelming amount of drugs being pumped into her every single day.
Next week marks three months since we arrived, and right now we're drowning in paperwork trying to get our visas approved.
Of course they're making it as complicated and difficult as possible, but we'll deal with it.

Even though we've been here three months, it feels like a lifetime. I can't even remember what our "normal" life used to feel like anymore. For most of our neighbors in the oncology ward, we seem pretty "fresh."
Last week, a 12-year-old boy finally got discharged after seven months... Discharged! That means he’s sleeping in his own bed at home again while still heading to the hospital for checkups every day. And who knows how much longer he'll be stuck here.
I really hope our stay is a bit shorter.

It's gotten quite chilly here, and you can smell autumn in the air. The weather is just like in a typical Midwest fall—slightly colder, with those annoying, dreary autumn rains making everything look gray and gloomy. It's the perfect setup for falling into a depression.
But hey, as long as the medical expertise remains steady, we'll push through the rest.
Love,

...
Kimberly Nguyen Kimberly Nguyen RegularOP
543 messages
joined Jul 2009
#42 ·
northernraven49 said:Things are pretty much status quo over here—nothing new to report,
still struggling with those breathing issues.
We're just sitting tight, praying this round of antibiotics actually does the trick.
She's back on steroids again, so she’s acting a bit hyper; her appetite is up, and she's finally
zooming all over the room.
If we can just get that breathing under control, we might actually be able to say things are looking up,
well, as much as you can say that right now.

Sending out special greetings and a huge virtual high-five from Leon today!
From Chicago (and shoutout to any other parents out there if they're lurking).

...
northernraven49 northernraven49 Member
14 messages
joined Nov 2011
#43 ·
http://www.facebook.com/profile.php?...5457206&ref=nf
Thanks.
Kimberly Nguyen Kimberly Nguyen RegularOP
543 messages
joined Jul 2009
#44 ·
Since that GoFundMe link isn't working for me, I went ahead and "dug up" the one that actually functions properly http://www.facebook.com/note.php?not...5457206&ref=nf.

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northernraven49 northernraven49 Member
14 messages
joined Nov 2011
#45 ·
My only regret is that she hasn't been officially credited as the catalyst for this entire movement, which is Kristina Kukolj, a journalist over at SBS Melbourne, Australia.
Without her, I doubt anyone in Australia would have ever heard about Leonica; it seems her heart is truly in Chicago.
Thank you, Kristina.
Kimberly Nguyen Kimberly Nguyen RegularOP
543 messages
joined Jul 2009
#46 ·
northernraven49 said:FROM DANIELA
Sending standard greetings to everyone, and sending tons of kisses to RoncuZG for remembering Leon's half-birthday. Honestly, it just melted my heart. I really thought we were the only ones still keeping track of these dates, but clearly, there are more of you out there. And let me tell you, the 15th wasn't exactly some celebratory day for us; we were in a complete state of panic because the very next morning, Leona had to go in for an open lung biopsy. There was this massive, terrifying question hanging over us: would she even survive it in her current condition?
Anyway, everything went okay. She’s slowly recovering now while we wait for the results to come back. We are desperately hoping they finally pinpoint why those lungs just aren't working and
that there might actually be a solution.
To be honest, the 15th wasn't much of a milestone, especially since just two
months ago, we were absolutely certain we’d be back home by now—or at worst, staying in a parent's house with Leona.
But nope, luck wasn't on our side. We're still stuck here in the ICU, and things just aren't moving forward like they should...

:::
Kimberly Nguyen Kimberly Nguyen RegularOP
543 messages
joined Jul 2009
#47 ·
northernraven49 said:Breathing is still an issue, but I have some incredible news—she just had a bone marrow biopsy, and it turns out she DOES NOT have leukemia.


👋 👋 🙂 🙂 👋 👋
mellowfox56 mellowfox56 Active Member
94 messages
joined Mar 2012
#48 ·
Man, it's awesome. Every single time I pop back into my own thread, I make sure to swing by here first to see if there's any news with you guys.🙂 Anyway, sending lots of love your way and big kisses to the little girl.
Kimberly Nguyen Kimberly Nguyen RegularOP
543 messages
joined Jul 2009
#49 ·
northernraven49 said:Daniela wrote this to us:

As you’ve probably already heard, the bone marrow checkup came back with incredible news—Leona is officially clear of leukemia.
Of course, there's always that lingering fear of a relapse, but right now? We are beyond relieved.
The leukemia is gone, the transplant was a success, and Lanina's bone marrow is functioning perfectly. Honestly, it's just phenomenal news.

The part that isn't wonderful is her lungs. Between the leukemia itself and the brutal toxins from the mega-chemotherapy, her lungs took a massive hit and she's still fighting through the damage. She's still on a ventilator; things are looking a tiny bit better today, but every single day is a brand new battle and the situation shifts by the hour. We are just praying she has enough strength left to pull through these respiratory issues too.

Sending love to everyone.

...
Kimberly Nguyen Kimberly Nguyen RegularOP
543 messages
joined Jul 2009
#50 ·
Even though the prognosis was grim, little Leona has left this world forever. She passed away today at 6:50 AM and moved on to a better place... even though I never personally knew her, nor anyone in her immediate family, the tears just started flowing and they haven't stopped... she was such a fighter... she fought so hard to live, but sometimes it feels like someone else has a different plan for us entirely...

My heart goes out to her parents and her sister

Leona, rest in peace.
granitepilot2 granitepilot2 Member
36 messages
joined Apr 2012
#51 ·
Rest in peace
There’s nothing else worth saying—really. 😢
Melissa Mendoza75 Melissa Mendoza75 Member
14 messages
joined Apr 2012
#52 ·
She’s with the angels now... her body doesn't have to deal with any more pain... my deepest condolences
Andrew Martin13 Andrew Martin13 Member
49 messages
joined May 2012
#53 ·
Oh man, I truly didn't see this coming. I can't even put into words how sorry I am; I didn't even have the honor of knowing them personally, but my heart goes out to them.
just stay strong and keep moving forward.
Kimberly Nguyen Kimberly Nguyen RegularOP
543 messages
joined Jul 2009
#54 ·
Little Leonica was sent off today at 2:10 PM at the Crematorium


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