And we\’ll all float on …

Lauren passed into God’s gentle hands peacefully this morning at 12:20 am.

Her last three weeks were spent in the “Princess Suite” at Children’s National Medical center and her mom and dad were with her at the end. Saturday was a day of love as friends and family surrounded her in a bubble of light to help her on her journey. Her friends from UVA came to sing to her – they brought guitar and flute and sang “Wild Thing” (which is funny if you know Lauren Loveshack!), “Let it Be” and “Everywhere to me”. There had to be about 15 people in the room singing along with them, Lauren in her bed in the middle of this great circle of love. It was a moment I will remember all the days of my life.

Later that night, as I was saying goodbye to her, a friend of hers (Natalie) offered to sing “Amazing Grace” and she has such a lovely, lovely voice. So we stood around Lauren\’s bed once again, Mom, Dad, Natalie, Matt and me – each of us with our hands on Lauren, sending love, light and blessings, as Natalie sang out these words:

Amazing grace, how sweet the sound
that saved a wretch like me.
I once was lost, but now I\’m found.
\’Twas blind, but now I see.

Amazing grace, ohh how sweet the sound
that saved a wretch like me.
I once was lost, but now I\’m found,
was blind but now I see….

Those of you reading this blog regularly know the grace and strength Lauren possessed. You could feel her spirit in her words, whether she was writing about getting dunked in a tub of icy cold water in Lourdes, goofing around with her wonderful suitemates at UVA or taking pictures of food she had lovingly prepared. Lauren and I shared the blog connection and Mary asked me to make this last post today. I will be leaving the comment section open here so please feel free to say anything you like. We appreciate all the love and prayers.

Lauren was involved in UVA\’s Relay for Life and many of us plan to walk in it on team \”Mighty Laur\”. If you\’d like to make a donation in her honor, that would be great. If you want to walk on the team with us (it will be big fun in April), email me: bexley@gmail.com. Here’s her donation page which gives more information about it and where you can also donate.

There will never be anyone like her again and I am honored to have been given the gift of being her godmother of love. We know she\’s looking down on us from Heaven and smiling that big smile because she\’ll see us all again someday.

We love you, La. Tell the angels we say hi.

- Godmommy

Snarkypants does not claim ownership of any of the music temporarily hosted on the site. This is merely for promotional purposes. If the respective copyright owners wish for their songs to be taken down, please contact us and it shall be done immediately. bexley@gmail.com



(Please pause the song to listen to this video.)

- Justin

Posted in General | 38 Comments

Surgergy # what now…?

Ooops, sure haven\’t kept you guys v. updated the past few days — sorry! Grr, still having trouble breathing, too. So frustrating. :( Well, I really AM going to try to keep this a short one (riiiiight) since I\’m drifting in and out of consciousness at the moment. Sigh.

  • So I had to have another procedure done with the chest tube, but I believe I\’ll call this one a surgery (#8 or something? yeesh) because it was in the OR and they gave me anesthesia which smelled like pine trees? Kinda sorta? (Ugh, really just need to type and get it over with because when I fall asleep I do odd things like delete half of a sentence. Huh. So please do ignore any crazy typos, \’k?)
  • During the surgery, the doctor just took the old tube out and put a new one in a better spot where it could drain some more (we hope, anyway).
  • Last night got randomly sick at 5am when my nurse came to give me meds. :( So bad! Didn\’t actually throw up the pill though, so that\’s … good? And thennn today I just felt sick the whole time, of course. Like the on-and-off nausea all day. Blah. Did have some lovely visitors, though: The Godmommy & Nunc! :) Yay!
  • Oh man I am following asleep so bad here. So this is the end, I guess! That\’s all the important stuff, I thiiink? Just told my nurse I am having trouble breathing more tonight so I think I\’m gonna get some flushin\’! All right so then see ya around. :)
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what is going onnn

ok WHAT? had part of entry typed … realized Grey\’s Anatomy was on … tried to find it on TV with my bed clicker … went 1 too far, and can\’t go back on mine, so asked mom to go back 1 channel with TV buttons, looked back down at computer, and WordPress entry textboxes ARE COMPLETELY BLANK WHAT HAPPENED!??!?

sigh. and so, again:

(oh don\’t worry, it\’s just going to be all complaining anyway)

Oh. Man. So I was feeling so well like, two days ago, and now I can barely breathe again. :( It just kept getting worse and worse throughout the day, and, in the midst of writing this the LAST time (glares at computer), one of the doctors came in and decided I need a chest xray and oops actually as it turns out I must go RIGHT NOW in the middle of GA (which of course is what I predicted in the last writing of this) and so gotta log off, see ya bye. (will edit later maybe?)

11:37 PM   EDIT Yes, okay, so it was a quickish xray and I caught the last 10 minutes of GA. But still, wasn\’t really paying attention to beginning anyway … oh what am I complaining about, I\’ve got it on TIVO at home. (I hope. I haven\’t been able to go through my TIVO in sooo long and so now I just assume I ran out of room about two weeks ago and am missing EVERYTHING. You can download TV episodes on iTunes now, yes? For like $2? Orrr something? Can anyone enlighten me there?)

Hmm okay, so the other news is that I will probably have a CT scan tomorrow to see if my piggy tail tube needs to be repositioned so that it can suck out some more fluid and then I can breathe again?? Maybe? Pleeease???

Yeah, seriously, you just don\’t know how bad this can be until you experience it, and I am so, so sorry for those in worse-off positions than me. Oh gosh, this morning I had some weird coughing/sneezing/dry-heaving fit that was so so bad. If I cough too much, it makes me feel like throwing up, so I always try to turn it into deep breaths and that usually works, except this time it really felt like something was going to come up so my mom grabbed my bucket and then … I sneezed? Very odd, but THEN, could not catch my breath at ALL, and it was horrible and I sort of cycled through the coughing/dry heaves/sneezing until finally calmed down (think nurse turned the O2 up) with cool cloth on my head. But whew. That was bad stuff. Please, breathing, I miss you!

Okay so now I\’m just hoping everything works out/goes well tomorrow. And again, will I ever see the outside of this hospital again?? (Forget more ambulance trips to NIH because I\’ve decided against radiation since the pain in my leg is not so bad … so unless it gets bad again … *nervously knocks on wood-colored plastic* … no fresh air for me until discharge?)

And uh, apologies if my last entry was a bit hard to understand ( target=\”a\”>anyone? anyone?). I didn\’t see anything too confusing, but I think I\’ll just blame my brain, which decides to turn off my consciousness and then further decides to make my fingers go on a crazy typing spree and who knows what I am saying then? Anyway, time for bed now, and let\’s hope some sweet sweet breath makes its way back to me tomorrow!

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Nothing new here, but…

Oh, apparently I know nothing. Though I said yesterday (well, now actually two days ago, technically) that I had no idea when I was getting out of here, the word \”discharge\” was bandied about quite a few times in the morning! (And just so we are all clear, since one of my suitemates was not ahem, Mary Anne ;), I also came BACK to Children\’s in the ambulance th\’other day, since I kinda mentioned I was back in the Princess Room — BUT, I was not explicit, and yeah, I can see how one might think I was staying at NIH for radiation, buuut: wrong! Sorry \’bout that!) Er, anyway: so it is possible I could be out around Monday? And please, do NOT take my word for this: it comes from the mouths of doctors. But, if I am out, looks like I will probably have my chest tube still in for a bit longer, and will DEFinitely still be on oxygen — and the latter for an indefinite period of time, probably till some of my lung tumors shrink, for better O2 saturation. OH: also possible will not do radiation now — pain is really feeling better in leg, so it\’s up to me. (Still thinking — not next week now, anyway.)

In that case, I\’m thinking I\’ll only go back to school for a day or two — and then, just to see all my beautiful suitemates and get assignments (thousands and thousands of assignments! *dies*) — seriously doubt will attend classes, especially with O2 tube … certainly not w/ chest one! Anyway, missed 17 days (incl weekends tho) already so highly doubt anyone would miss me a few more!

Well that\’s all you get for now b/c I am typing ONE-HANDED, UGH, since stupid pulse-ox taped to finger gives me so low O2 sat readings, and then so loud beeeeep, beeeeeps– not very nice, really. Oh, but to end with joyous news, had a bath today! Hurrahhh! Oh right, and besides being clean (not that that\’s not V. important, truly!), had a chest Xray that said my fluid sac was looking clearer yayyy! And of course, just ONE more happy-happy thing: much love to the very grown-up Michelle on her (technically yesterday)
20TH BIRTHDAY!!!

and phewww. NO. more. typing.

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Ambulaaaance!

Well, no boring old hospital day for me! Oh no, I wake up (feeling a little nauseated in the first place, unfortunately, which kind of lasted all day, or until after I was done with chemo) and my favorito nurse Shannon greets me with meds and I go back to sleep and she comes back and says, Dr. S wants me to go over to NIH in an ambulance today! So wheee, maybe? And then everything happens quite quickly … Dr comes in to talk to me about the trip, AND we must go by noon. And Shannon says, well that probably means BE there by noon, so you better just be ready to go because you don\’t get much warning. Fun! So okay, I kinda lie around and brush my teeth and feel sick some more (wahhh) and decide I\’d like to wear my wig and contacts wellll just in case any of the EMTs were cute guys like on my first ambulance ride way back when, hehehe … um, unfortunately though, no, but also since that\’s how the NIH doctors/techs have always seen me, so that would be more comfortable for me, but either way, BOY was this a good idea later on, as you will see!

So we find out I have like 30 minutes (or 15 maybe? can\’t remember) before the EMTs get here and I was on the phone with Moe, which was just lovely!, and I think it was after that I had to wrestle with my contacts, which I haven\’t worn in, well, 15 days, so that was less lovely obviously. And then I just wanted to brush some eyebrows on and then, arrgh, the extremely nice social worker Lynn came in to talk to us so I felt bad for playing around with make-up stuff while whe was in there but oh well, don\’t think she cared. So anyway, I did manage to get all ready before the EMTs got there, somehow. And so they bring in the super-hiiiigh stretcher and I say, \”Okay now how I get up there??\” and they say, \”Duh, we lower it?\” and so they do. And I get in, and they bring me up, but oh it is so fun when it comes up! It\’s like you\’re on the floor, and then BOOOING, you\’re all up high in the air! Quite fun.

So. The ride. No flashy lights, sorry Moe. :/ But they had movies! Not a ton of non-kiddie ones, but they did have Harry Potter (#1), which I haven\’t seen in a while, but it doesn\’t really matter because of course I fell asleep most of the time towards the end. And guess what happens? The EMT driver ends up at the WRONG HOSPITAL! Oh my gosh. And my mom is even sitting up there with her, and how many times did we drive to NIH when I was having radiation there? Yes, approximately 12 times, that is correct. But you know, she trusts the driver, and also the driver kind of ignores her passive remarks that PSST, this is NOT NIH. So we end up at this other nearby Navy hospital and we\’re all kind of like \”hmm this is not quite right\” but they bring me in through the back, which is the ATRIUM, which is where all these Navy people who hate civilians are sitting (but here is where I am sooo happy I am wearing my wig and looking semi-normal. Whew.) and I\’m sure wondering why there is a group of EMTs rolling a stretcher through here and FINALLY the driver is like \”oh wait, uh oh!\” And Mom and I are like, Yes. Hello.

So anyway, wow this is getting long. I sure like my tiny details in writing. Well so we get over to NIH, to the RIGHT place, and I talk to Dr. C over there and a new doc (Dr. M) and we decide oh yes, this area where it hurts when I press it, and which is also the stem of my left inner thigh pain, and which ALSO is the exact location of one of my tumors, well okay maybe we should do radiation there to relieve the pain. Yeahh, fine, I guess. Looks like we will start on Monday and do 5 days of radiation. Guess what? Next week is my last week before spring break. And I have now come to my senses and realized there is no freaking way I\’m getting out of here before the weekend. My tube is nowhere near being done draining, pain is still not under control, and … what else? Oh yes, I still have to let down my new Rapunzel-like wig down for my prince to climb up! (They really take this \”Princess Room\” thing seriously, people! AND, I\’m on the 4th floor! Yikes!)

Well, so seriously, I do not know when I\’m getting out of here. :P On the bright side, Mrs. Tschetter came with my dad for a little visit tonight, which was very nice. Also got a package from Mom\’s friend Jane, who sent me a ROBE! I have been wanting one for sooo so long, and we got the loveliest plushy blue ones to wear during Spa Day (have I still not talked about that? I know I haven\’t written about the Med Reaction from Hell yet, ugh) that we COULD NOT KEEP! and I was so sad, but oh, Jane sent me one just like it! So wonderful and thanks sooo much. :)

Err, think that is it for tonight. People, it is so SAD how long it takes me to write these things. Why?? Anyway — time for bedtime things. Good night!!

Posted in General | 2 Comments

Not much new…

I am on physical therapy now, though. That\’s kinda good, gets me up and walking finallyyy. (It\’s going pretty well too, though got a little tiring today.) And I even remembered my therapist from like, a year and a half ago when I had my leg surgery! (I do have some new ones, too.) And I\’ve got some leg stretches to do in bed, which I just realized I haven\’t done at ALL yet, OOPS. (Will do so before I go to sleep, promise!) In my defense, I\’ve fallen asleep about 6 times today, thanks to the increase in one of my medications. Still in pain but I\’m hoping this time it might actually work … and ALSO hoping that I will obtain some tolerance in the sleepiness area, unless I want to doze off (or shall I say \”dose off\”? heehee) while reading forever (or until this pain stops). No thanks! Actually got some Italian homework done, though. So that\’s all that\’s going on for now! Lots of pills, lots of naps, little bit of homework, little more PT, and very little eating (although I did do better there the past couple days!). And so I pass my time. :)

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A Day of Visitors

What fun! First Mary Y, my wonderful nurse practitioner, came to see my mom and me, which was very very nice! I got lovely presents too, including a silly little chocolate chip cookie book (includes recipe!) and a very nice little scrapbook. She got to stay for a while and chat and I only remember a bit of what we talked about because unfortunately, we have to face it at some time, that I am just completely and totally losing my mind at this point. But what can ya do. :)

So after that, Ami & the adorable Tyler came to visit, which was also wonderful! Especially since they brought some baked goodies (chocolately mint cookies which I don\’t know the name of, other than \”delicious,\” and perfectly moist and chewy brownies), as usual, and which Tyler always helps to make, and I gotta say, the kid\’s got a future in baking! ;) (They brought other cute presents too, as they\’re always just way too generous, what can I say — besides a big ol\’ \”thank you,\” of course!) So they had some fun in my Princess Room and Ami helped me with a project for my Slavic class and it was all very fun and great to see them. :)

The final visitors were Dad and Christine, which was nice because I haven\’t seen Chris in just over a week, I think! And then it was not so nice because she was in a bit of a blue mood (shall we say) and kind of cut the visit short. Oh well. Anyway! The weekend went well. Finally got caught up on most of my UVA mail and discovered that my Italian professor is under the impression that I have been keeping up with my assignments — gulp! (I mean, maybe I did kind of mention to my mom that she could tell my prof something to that effect, but then hi inability to breathe, and lung procedure, and other maladies, etc.!)

So! In conclusion, really gotta get cracking on some homework this week, especially since still have not heard anything at all about when tube is getting out and so consequently when I am getting out. So in the meantime, I will work my twitchy bitty fingers off (heeheehee…)!

Posted in General | 7 Comments