They found the teratoma!!! Yes, you read that right everybody! The doctors have finally found what they’ve been searching for since Tintin was diagnosed with Anti-NMDA Receptor Encephalitis. You’re asking what this means right? Well, if you’re like most, you probably haven’t researched what her disease is about and what typically causes it. Teratomas found in the ovaries are the most common cause, and FINALLY they found and removed one from her left ovary. We’re hoping that this is it.

She’s already been on a positive trajectory since she was admitted to the rehab hospital on Tuesday. The Physical, Occupational, and Speech Therapists have had her busy each day doing things like walking without a walker (see the video I attached), taking a shower sitting on the bench, and reading, writing, and arithmetic. She’s young and strong so the physical stuff is coming back really quickly, but like I’ve mentioned before, the memory and brain functions will still need some more exercise before we can say she is 100%. The best thing is that she may be able to come home soon! No need to keep her here for that part. We can do that as outpatient I’m sure.

So basically, I feel like the weight of the world has been lifted off my shoulders with the doctors finally finding the teratoma and removing it. I vividly remember talking with Carla, the friend of a friend who went through this same ordeal, and her telling me that it would be awesome if they found a teratoma on her ovaries, because it would mean once it’s removed, everything goes back to normal. I really hope this is it!! Tin’s sister Michelle said she’s never been so excited to hear about a tumor being found, lol. Me either Michelle! Me either. Whew! Looks like that party is coming sooner than later. Love you all! – Billy

Hello everyone. It’s been a busy busy week for Tintin. This girl continues to amaze us with her recovery, and she continues to surprise everyone with new things every day. First off, her plasmapheresis treatment is now over and her creepy neck catheter has been removed! I’ve enclosed a photo of what it looks like, comparing it to the size of my hand. No wonder she didn’t feel like eating anything. I was worried about her sleeping too much last week, but after over 24 hrs. of sleep, she has gone back to a more regular sleep pattern. I guess she just needed a deep recharge of her batteries! She is now on the 6th floor, where it’s less critical care, so that’s another sign of improvement.

Tin’s appetite for outside food is growing, and this week she ate some Vietnamese “bun thit nuong” that her mom or sister brought her, and since she was preferring this outside food all of a sudden, we asked her what else she wanted, and right away she said “tacos”. We asked her again a few more times, and same answer. So today, Nini and her co-workers who Tin knows, went across the street to Urbano, our new favorite Mexican spot by here, and got her some carne asada tacos, and she wolfed them down!

Tin has also been making great strides in the physical therapy department. What started out barely a few days ago as barely being able to stand on her own, has now progressed into her showboating all over the lobby outside her room, walking in her walker! I’m telling you, this girl is determined to go home. Just ask the docs and nurses. She’s always asking them how to get out of here, lol! Poor thing. That’s another thing we’re now experiencing. She’s starting to show feelings and emotion. She’s getting lonely here all by herself overnight, and she is also concerned for others, like when her co-worker (now boss) Yvette came, and Tin told her “okay, I don’t want to keep you”. Sorry Yvette, she wasn’t trying to ask you to leave hehe.

Tin’s occupational skills are improving too. She started coloring in one of those adult coloring books and she was precise and neatly filling in areas with her markers! Oh, and we had her practice her signature and sure enough, she could write it exactly how she does, albeit very tiny, but hey, we can now send off her short-term disability form cause she’s able to sign it! She was also able to play some brain puzzle games today. Pretty cool.

Tin has passed the physical tests to qualify for physical rehab, and she should be transferring to the 3rd floor for that, possibly tomorrow, once insurance approves the request. This is the progress we’ve been hoping to get to, and we didn’t expect it to happen this quickly. Just yesterday she was learning to use the bedside commode, and today she’s already going in the regular bathroom! Sorry if this is TMI! I’m just excited for all of this.

The brain has obviously been the most affected and crucial part of this whole disease, and I want to remind you all that this is the hardest part to wrap your head around. Photos don’t show you her lack of a short-term memory. I’m sure it will come back soon though. She can memorize what we tell her, but when we sort of put her on the spot with things like what kind of tacos she wants, she changes her answer from carne asada to carnitas if you ask her again. I scroll through Facebook and show her all the posts and photos on her timeline, and she can name off everybody, so you are all not forgotten lol! She’s in there, and she’s got work to do, and she seems to know that she has a hard time remembering things cause she told me she couldn’t answer some of the doctor’s questions correctly, like why she was in the hospital, which she made it sound like she was a little disappointed. I reassured her that it was okay and it just takes time, and some things are better not remembered, like how this all started out over a month ago. I’m just glad this was caught within a few weeks. Reading so many others’ story about this Anti-NMDAR Encephalitis, and seeing how they went into a coma, or slowly battled with confusion and depression for a few months before getting the seizures and brain swelling that can cause permanent brain damage and memory deficits. I’m hoping and am pretty confident that Tin will regain her full personality and compassion that she once had before. If there’s anything in this world I want for her, it’s for her to have that back. I selfishly need that back. She needs it back for herself, too. Oh, and you better believe she’s gonna knock this physical rehab out in no time…And we’re throwing a huge ass party for her! You’re all invited. Love you all. -Billy

Hello everyone. It’s been a week since my last update, and if you thought last week was good news, then you’re going to think that this week is GREAT news! This girl is making great strides in her progress, and every day there’s something new that we see from her.

Over the past week, we’ve seen her speech improve, and she is forming longer, more complete sentences, and most importantly they’re making sense and are mostly in response to our questions or conversations in front of her. I’m not gonna’ lie, you should’ve heard her random comments about being in outerspace, and talking to mother earth. Very trippy, but we understand this is still just the brain trying to “exercise the demons” -Ace Ventura, hehe. She’s also had a few minor seizures. Nothing to be worried about they say, but she’s been given some medicine to help with that. Other than that, she’s been all about the gains! We carried on a 5 minute conversation with the sitter the other night about her side hustle as a bartender. She was telling us how she went to school for it, so it’s good that all these memories are starting to connect again. Another funny story, was that I was holding a yellow manila envelope with some documents about her Anti-NMDA Receptor Encephalitis, and I think it triggered some memories about work, and she said “I’ll take that and give it to Yvette”! She associated the folder with probably the same types she hands back and forth all day at work, and of course her co-worker Yvette who she sees every day. Yay, more memory recollection!

Yesterday, the occupational therapist had her sit on the edge of the bed for awhile, which must feel good, although tough to do, especially when you’ve pretty much been bed ridden for over a week. They’ve also been trying to get her to practice walking again, and she’s getting the hang of that. I posted a video for you all to see. Still a long way to go, but this is progress to us! She also has more deliberate motor skills, with less shakiness than before, and is a pro at eating French fries and dipping them in sauces, and also throwing them across the room. Yeah, I’m not sure what that’s all about, but I tell her to knock it off, lol. She’s all of a sudden found this attitude, and it started with throwing her stuffed animals out the room, and then she took her Naked Juice Green Machine and dumped it over her shoulder, making a mess on the bed sheet! This girl!

She hasn’t been sleeping very long these past few days, but since today she has finally started sleeping A LOT. She looks relaxed and not fidgety like she normally does, so hopefully this is natural sleep. She isn’t catatonic, so don’t worry. She responds to the nurses and squeezes their hands and stuff still. I believe she has one or two more plasmapheresis treatments left, and then the doctors will decide what the next phase will be. It’s hard to be patient sometimes, but what other choice do we have, right? She’s got some amazing sitters that really have been key in helping her with her daily living, and keeping her company, and the nurses have all been really great to her as well, so that makes it easier for us and for her.

Tintin is now in Room W683, and she is allowed visitors, and small flowers, and all that good stuff, so if you wanted to visit or just let her know you love and miss her, then feel free to! Huntington Memorial’s address is 100 W. California Blvd. Pasadena, CA 91105, and heads up, parking is not free, but the max day rate is $6. Valet is $7 for you fancy folks. I usually park underground right in front of the main entrance off of California Blvd across the street from Vons.

Well, that’s about it for now. She’s doing great. She’s silly (she wanted to put her stuffed toy dog on her head). She’s got her spunky attitude, and she’s speaking her mind (of course with no filter) lol. Who can blame her, right? Thanks for all the well wishes, support, and for caring enough to stay on this crazy journey with us. Love you all! – Billy

Hey everyone. I was going to try and make this update thing a weekly event, but I am just too excited and felt like today was a great day in terms of Tintin‘s progress. It’s been a few days since her Solumedrol steroid treatment completed, and today she started her plasmapheresis treatment, which they will run for 5 days and then depending on her progress, they may choose to do a few more days of it, but her doctors are liking what she’s already showing them. It seems like her motorskills and level of communication have increased 10-fold over night, and keep in mind that this is before today’s start on the plasma infusion. My Mom and Nini came to visit her this morning, to find her with her new neck catheter installed (for the plasmapheresis), which is of course kinda scary to see, but you understand why it’s there. After a little bit of command exercises to wake up her brain, her motor was up and running. She was eating for them, which she has been increasing her food intake each day, and has been able to chew and swallow much more deliberately as if it’s back to being a natural process. She’s not gonna starve, that’s for sure! For the past few days she’s been able to follow my simple commands of “smile” or “show me your teeth”, but she struggled with stuff like “grab my hand” or “close your eyes”. It goes to show you how intricate and delicate the brain really is. So get this. During this morning’s interactions, Tin sits up and points at Nini’s water flask like she wants it. My Mom slides the table over to her and asks if she wants it. Tin sort of points and nods and my Mom hands her, hers, and she proceeds to hold the 40 oz. flask up to her mouth and take a sip out of it, all by herself! Just 24 hrs. before, she could barely hold a sippy cup up to her mouth. Shocked would be an understatement! It gets better. Lunch time comes around and they hold up the room service menu for her, and she starts pointing out exactly what she wants. PB&J sandwich, a coke (which she actually said coke), and French fries. Wtf?! Who is this new person? Oh, it doesn’t stop there. So, the fries come, and what does she do? Starts picking up her fries, dips them in ketchup and feeds them to herself. She was eating soft mashed up food just a few days before. If this isn’t a sign of things moving in the right direction, then I don’t know what is. I can’t begin to tell you how proud I am of her progress, and this is all before this crazy bionic plasmapheresis stuff was even started.

Her administering of new plasma was a cool thing to see. It’s done similarly to dialysis, where they pump in new plasma and they take out some of hers. The new plasma will take the wheel of her plasma and teach her auto-immune system to get back to work, fighting off viruses and infections. Oh, and we finally got an official diagnosis based on her lumbar puncture lab results, and she tested positive for Anti-NMDA Receptor Encephalitis. That means that Neurologist Dr. Rosenberg from Magan and Inter-Community, who first suspected that and treated her, was right in that she did have it. That’s great, and means they can continue down this path more confidently. There is such a sigh of relief right now from me. She’s more healthier, responsive, alert, hungry, and still sweet as ever. I ask her for kisses and she puckers right up…Sometimes slipping some tongue in there 😑. Mmhmm. Blame it on the brain ticks, lol. Speaking of ticks, the only one left that I notice, is her chewing while asleep mostly. Sometimes while awake. Looks like a junky who needs a fix lol. It’s probably related to some of the meds. Not quite sure, but it’s minimal. Tonight, her nurse came in and asked her to perform tasks for her and she pretty much was capable of doing them all. Holding up hands, squeezing fingers, wiggling toes, nodding yes and no, and she was even able to answer “yep” to a question. All major improvements for her. She has started working with the physical and occupational therapists on getting these functions going, and we’re gonna continue to keep it up. They brought a recliner chair into her room, and she likes sitting in it when she can. I’m sure it’s a nice change from laying in the bed all day. She’s a trooper.

So yeah, this week was full of a bunch of small advances, until today when it seemed to just take 10 steps forward. So nice, and a long way from almost 3 weeks ago when we were taking 2 steps forward and 1 step back almost every day. I hope this keeps up, and she improves even more rapidly after this plasmapheresis phase. I’m crossing my fingers!

I want to thank everyone who has followed her on this crazy journey. Her eyes lit up when I told her that her story got over 700 views on my blog in 24 hrs. That’s all you guys checking in on her. Every like, comment, and share, will be there for her to see when she gets better, and you know this gentle sweet girl just wants to be liked, loved, and accepted by everyone. Why else do you think she puts herself out there unconditionally for so many of us? Because she wants…No…She needs to be loved. I don’t ask people for anything, but I would like to ask you all to show her some love! It’s her lifeblood. It’s her energy. It’s her soul. Thank you everyone for the love and support.