For Your Entertainment

Last night, while I was reading aloud from Big Red, R made three short films. I thought I'd share them with you, especially because he asked me to. So without further adieu:
Clay Animation

Line Animation



Cookie Gone


Hope you enjoy them & I'll probably be back tomorrow or Friday in full swing, because sleeping is impossible. The insomnia is back with a vengeance - ah, the joys of being hyperthyroid.

Or so we thought...

After speaking with the surgeon, we were expecting PICU (Intensive Care) to call and tell us when it was okay to come see him. We waited 45 minutes and heard nothing. I asked the volunteer at the desk, who happens not to be Little Miss Sunshine - but that's another story, if we had missed their call. She informed us that we hadn't and that they wouldn't be calling because they never do, they just expect you go over.

Well, that was not 100% correct. In other words, that lady don't know Jack!

We decided to grab a bite to eat before heading over since they don't let you bring food on the unit. While we were feasting on world-class cuisine (hah!), Tyler's blood pressure was dipping dangerously low (60/40) and he was having what appeared to be a mildly violent seizure. They tried calling the waiting room 4 or 5 times to reach us to know if the seizure was a normal thing for him (it's not).

***
I didn't believe the doctor when he told me that Ty had had a classic seizure; he just doesn't have those. His are more of the staring off into space variety, and he always comes back to Earth when you tap him right between the eyes and say his name. All of that to say, I saw the seizure activity myself a couple hours later; it's reminiscent of the chills you get after childbirth or when coming out of anaesthesia.
***

We arrived 30 minutes into the trauma, and by then things were starting to look better. It is 4 hours later and we still have no explanation for why his heart rate and blood pressures fell, it doesn't make any sense. He had completely normal heart rate and pressures through the surgery, so it most likely isn't a reaction to the anaesthesia. Also, when you're in pain your pressure tends to go up. All his blood labs came back normal, so they are mostly scratching their heads here. Hmmm.

They had to stop his pain medicine and flood him with roughly 4 liters of fluid. You could say he looks a bit like a water balloon. But the strategy seems to have worked - he is bouncing between normal and high.

Now he has an unexplained fever that keeps going up -

39.2 C (103F) and climbing

They are drawing blood cultures to make sure he doesn't have an infection. There is nothing for me to do but hold his hand - he's still completely zonked out. His snore reminds me of a chainsaw motor.


Which very loosely brings me to this.

I hope Ty wakes up soon, I have entirely too much time on my hands.

I think I remember feeling the same way in Biology 101

Not that the prof was boring or anything....

Crazy

(Pause the radio player at the bottom of the screen to hear these)

She has an amazing voice!
Willie and Elvis aren't half bad either...

I still think Patsy did the best version of it, though
Here's Jessica Lange performing (lyp-syncing) with Patsy's voice from the movie "Crazy"

Ty's Tuesday Music Picks & a little Philosophy

I was all set to have a little rant, a mini pity-party. I typed some really good lines of reason for the way I felt. In fact, I felt more than a little justified in being so hurt.

And then tonight, when we were all sitting down as a family to discuss and read scripture my son read this:

James 1:26 (King James Version)
26 If any man among you seem to be religious, and bridleth not his tongue, but deceiveth his own heart, this man's religion is vain.

Am I just 'seeming' to be religious? How could I give voice to such mean & petty feelings? It made me realize just how far I have to go, just how far I am from being true to what I know.

I had become offended, and in doing so put my feelings higher than anyone else's. The one thing that brought it all back into perspective was that scripture.

I'm glad I never posted those hurt feelings - I think they were an attempt to dish out a heaping helping of hurt (albeit in a very passive-aggressive way) to those I felt hurt by. But now I feel all sort of Coke commercially. I wish we could all hold hands, sing, & just plain get along. You know, it's the real thing. (Ty would love this song just for the banjos and harmony).



Also, I realized that we are all just people, and sometimes we do dumb stuff without realizing the impact it has on others. I'm sure I've done more than my fair share of it.

And even though something in my head wants me to, I really can't get all worked up about this without remembering that everybody hurts sometimes. Especially those who hurt others.

Ty's Tuesday Music Picks & A Birthday Song

For all you July people out there.

A little love on Flashback Friday

Edited to show you the snafu (below).

Meg is someone I read pretty regularly (if you can call a few checks a day for new content regularly). She encouraged her readers to make a love list, and you all know how I love a little encouragement. I appreciate the reminder to look at how many wonderful things there are in your life and allow them to dwarf all the others.


Things I love
Sun over the ocean
Toes in the sand
Sitting back in a beach chair watching the waves come in
The smooth feel of pen on paper
Grandma B's white hair
Road trips
Hot from the oven cookies
Thunderstorms
Mysteries
Cut flowers
Drive-in movies
Snuggling with Ty
Nightly read-aloud time
My melt-into-me mattress
Combining colors, patterns, warmth, and stitches
Airport hot chocolate topped with ice cream
Glossy photos in a home magazine
The smell of my toddler, fresh from the tub
Reading by flashlight on the tramp
Laughing hard enough to wish for a Depends
Curling up with a good book and an old quilt on an overcast day
Merry-go-rounds
Splashing in puddles
Feeling like a kid again

How about you? What do you love?

This past week I've pulled out my trusty Bernina and my arsenal of fabric to finish some projects that have been hanging around. In honor of actually having a hobby again, our Flashback Friday is a picture of a quilt I made for a dear friend when she was diagnosed with colon cancer.

The Japanese say you should never make a perfect quilt, because your gift should not be better than the recipient. If you look closely, you will find that I am in no danger of offending anyone (rather a big booboo), but it truly is the thought that counts and a lot of loving ones went into this quilt.

The mistake is in this block. All the parts between the arms of the X were supposed to look like the picture to the left. Instead, it's like that game on Sesame Street: "Which of these things is not like the other?" But I love it anyway.

Ty's Tuesday music picks & an announcement

Gather the boys around, because they're in for a treat. Finally, something they can aspire to. Portable DIY entertainment. (*Remember to scroll down to the bottom of the page and click pause on the radio player so you can listen to these clips in all their glory).

Bohemian Rhapsody accompanied by Queen


And you thought this song was annoying on the piano! What if your kids could do this? Car trips would never be the same again.

"But, mom...I have to practice!"

On another note, Ty is doing well and we are still waiting for the doctor's to get over their vacation catch-up work so we can discuss Interferon to treat Ty's tumor. It has not changed in size (good and bad). All the hair on the back of his head has fallen out, but he is the fuzziest kid on top. Now for the announcement....

No,
I am not pregnant with twins,
but we are expecting this......

Tune in on Monday, July 23rd to see what fun giveaway I'm unveiling. One entry per person per item - U.S. residents only (unless you'd like to pay shipping). You do not have to have a blog to enter, just the ability to leave a comment. Until then, or actually until tomorrow, because I know you just can't go a day without checking in.

The twirly thing

We found this at the mall on Tuesday and it's Ty's new favorite eye candy.

Somehow the video isn't that great of quality, so I'll try again later and swap it out.

Ty's Tuesday Music Picks

First, a little sun for the lovely New Zealand people.... from the Sensory Garden

Just a reminder, to watch these videos, you'll first want to scroll down (to the very bottom of the blog) and put my lovely music player on pause then come back up and click to play the vids.

Ty's hair has started falling out. Again. Rats! It may be time to get the lint roller out...

It really does work great to get the stubble off before it ends up in his ears, mouth, eyes, you name it. I just wonder what he thinks when he hears the tape - shhhwick and feels the tape - brrraaap rolling across his scalp.

We sure are gonna have some great conversations one day.

Back to the music vids, here's the second installment of OKGO. I think the reason they appeal to me so much is the dancing (and the guy in the white shoes somehow reminds me of my cousin). I think it's his panache and extreme lack of self consciousness, plus my 'cuz starred in his own friend's movie.

Now, do all my many other cousins know to whom I am referring? If you're reading this, I'm sure you know who you are (remember that whole 'fainting thing' in Grandma's basement? Ahhhh, we had some great times Rambo).
Next up is Life In One Day by Howard Jones
Ignore the poor video and sound, I really did know a guy in High School with hair like that and clothes like that. Hmmm...It must've been the 80s. Like, totally gag me with a spoon.

Some Lemon Pepper Grilled Chicken salad. Yum - for grown ups!

If you've made it to the bottom here, let me share some more fun with pictures:

You're telling me we're outta 'hot'? (oatmeal)

Oh no!

Do you really think I'm gonna fall for that one again?

See, I knew we had some. Yum!

Ty Will Rock YOU!

Edited to say: This video is brought to you courtesy of my birthday fairy. She (actually Mr. Triumph) has waltzed our family right into the 21st century with a digital camcorder and we've been having lots of fun with it. It's not too great at still photos, but on Monday I'm updating the blog with Sensory Garden pictures taken with the digicam.

I've decided to read your comments to Ty, I think he'll get a big kick out of them. So, if you stop by - won't you please drop a line to him? Tell him how awesome he is and how fun it is to hear him sing along and stuff. (If you post anonymously and you'd still like him to know who you are, just include your name in the comment). Maybe we'll be able to convince him to do a karaoke night for us. Thanks.

I trimmed this video quite a bit, but I thought you might enjoy watching him Jam Out to Queen. Listen closely, about 12 seconds into it (38 sec mark) he says "Rock You"
He actually said it twice, but I somehow edited it out of the video - oops.

That is huge! He mostly signs. The only other word he says is "again" so this is a major deal! Yay!!!!

Flashback Friday and a little dance history

I am going to refer you to this post. I know I posted it just this week, but I loved the pictures and couldn't wait to post them. They are a flashback of sorts - prebaldy ones.

Ty is still doing well and wolfing down the gogurts. He is still feeling nauseous.

For alittle Friday entertainment, I present the following

Now, if you'll excuse me while I display my flexibility

Ty's Tuesday Music Picks

Edited to change out video (for a really fun one)
I played my playlist for Ty today and discovered a few I need to add to his Ipod.

For your listening (and viewing) entertainment:
You may all have seen these guys already, but I hadn't - so I thought I would share.

Who can forget this era?
Choose Life! Waxed eyebrows, neon, and short shorts - oh my!


Ty loves the sound of string instruments, so it was only natural for him to dig this next one. I may just have to learn how to pick that chorus on the guitar.

Happy Tuesday y'all!

Thursday Measurements & labs

This week the tumor measures 14.5x17cm. That's smaller, folks!

Wahoo!!!! We're heading in the right direction. In two weeks he will have his last treatment of this type of chemo. They are lowering the total dose, but still giving it over the same amount of time.

Monday's labs (awesome):
WBC 1.9
ANC 1.3
Hematocrit 38.5
Platelets 180

Thursday's labs (also pretty awesome):
WBC 2.1
ANC 1.2
Hematocrit 35.1
Platelets 154

For an explanation of these numbers go here.

Since his numbers are so good, we don't need to do blood draws any more, unless he seems sick.

His hair is coming in so fast, I swear you can see it growing right before your eyes.

Ty's Tuesday Music Picks and a laugh

First, a family favorite -


Me and Julio

He likes this one, too - 500 Miles


A little Rhapsody in Blue - this was his favorite for years, especially when a good sub-woofer was on.

Just watch the first two. Doesn't the first remind you of Meg Ryan? The second one just cracks me up. Ohhh, I needed that.
The third one is just silly and the last one is painful to watch. Take my word for it, just the first two. You didn't watch the whole thing did you?

Flashback Friday & Smart Habit Saturday

It has been an interesting week. Ty has done well at the hospital.

As far as habits go, aye yi yi yi... Let's just pretend it didn't happen. I'm calling a do-over for this week. This time I really mean to do it.

But, I am going to have to use Lara's habit.doc to pull it off.

If you have some habits you'd like to work on and want to play along, visit Lara's site and learn more. How am I doin'?

Meaningful prayer - working on it
Going to bed early - Hit and miss
No Soda - I have got to come up with a strategy for when I'm at the hospital and so close to the fizzy stuff - at home it's no prob.
Drinking water - Very nearly a habit
Making dinner - meh...I know - Cereal doesn't count
Medical papers - Totally awesome, completely current
Journal - HABIT


And now for a FLASHBACK..........
Here's a picture of Ty and Spielberg when Speilberg was just a week old. I snapped a picture of this old picture. Notice the white scuff marks - This photo (and the box it was in) somehow jostled its way off the pickup truck during a move. My sister and I spent an afternoon gathering over 300 scattered pictures from either side of the Interstate.

We never would have known about it had a passerby not stopped to investigate the "moving blanket" on the side of the road. It was really a quilt from the Philippines - a rather nice one. He looked around some more and happened on a page that had ripped out of my Engagement scrapbook. He found my maiden name and started calling all of them in the phone book.

I answered the phone when he called. Unfortunately Mr. Triumph was working on our house (4 hours away), so my sister and I headed out there to scavenge what we could. Just a little tip: Never, and I mean NEVER put the box with your pictures, album and negatives in the back of an open bed pickup truck. They should be in the cab because otherwise, you're just asking for disaster to strike.

Also, I don't advise picking up pictures from the side of the freeway. It is better to be alive and try to remember how cute your baby looked and how skinny you were on your wedding day. Sigh.

Alright, here is my testament to finishing up the insurance papers. I am done. At least until the mail comes on Monday.
Maybe it doesn't seem very impressive, but keep in mind these are only for January-mid May.
And to finish off, here's a little cuteness.

You may be wondering why all these pictures look like they are taken at night. No? Well it's because I can't hold still (thank you hyperthyroid levels) long enough to produce an unblurry picture so I have to use the auto-focus w/flash.
And that's the truth. (Insert raspberry here, ala Lily Tomlin on Electric Company ;)

Ty's Tuesday Music Picks

For your listening and viewing entertainment:


A little pick me up, he loves the middle part.


An oldie but goodie, he loves the extended version when they crack up at the end.


This is about 100 times better on the cd (buy it!) He loves the beginning when they say Oh Yeah! and this clip just doesn't do it justice.



You have to watch this, you may be moved to tears.
An amazing talent - and Ty doesn't normally go for this sort of thing...

Happy Tuesday!

An update with a side of levity, not brevity

Thanks to those who listened to my introspective post yesterday. I've pulled it, because it stirs too many emotions for me. Thank you Montserrat for your comment.

I attended Justin's funeral Tuesday morning. It was one of the most spiritual, touching services I've been to. The family pictures on the program were so - well, you could just feel how much they loved him by looking at the pictures. They were wearing white shirts and khaki pants and in one of them all of his siblings were kissing him at the same time while mom and dad embraced all of them. There was so much joy in their faces they were radiant. That is what I want my family to feel for each other.

I suppose there are some changes I need to make. Far too often my children have felt the worry, the tension and the stress of what we're dealing with. We are going to put F-U-N back into the picture.

We will meet with the surgeon (who happens to look a lot like this guy) on Thursday. I'm pretty sure he will suggest waiting for 5 or 6 weeks to see if the tumor has stabilized at this smaller size before deciding whether surgery is necessary. We're just concerned that the tumor will start growing again now that it's not being assaulted with chemo and end up being too large to remove.

We found out today that the Tumor Review Board will actually discuss Ty's case next Monday, and we will have their opinion on June 5th.

If there is going to be some time in between now and the next step, I'd like to put us all on a plane and go somewhere with sandy beaches to walk on, hammocks to nap and listen to the surf in, and dolphins to swim with. And for just one week, put all of the medical stuff behind us to reconnect and enjoy each other.

Now for a tip from your friendly neighorhood uptight gal - there is nothing like sinking your hands into the earth and ripping out scores of weeds by their little, rooty hearts to make you feel great. Try it, it's very satisfying. It's even more so if you forget to put on your gardening gloves first and you can feel each finger wrap around their noxious little stems.

This only applies to weeds though, not people. Wrapping your fingers around anyone's noxious little stems will only get you into trouble and we're trying for stress relief here.

Every once in awhile, I have some questions rattling around in the back of my mind - none of them important - but they're still there. Like that song from the Muppet Show that gets stuck in your head when you hear it -


Does anybody remember the Muppet Show?

Anyway, as I was wondering:

1) Where did these come from? French Manicure Acrylic Toenails are kinda cool, in a creepy way. Too bad I didn't invent them - I'd be living on that island I was going to buy in the South Pacific by now. At least you don't have to worry about how to zip up your jeans or pick up change off the counter like you do with acrylic fingernails. Probably, the biggest hazard is to your sleeping spouse in the form of an accidental (or not) toenail bloodletting - some of those puppies are pretty long.

2) Do your plastic container lids "multiply and replenish" every time you close the cupboard door? I think I have about 1/10th the number of containers as I do lids. Maybe the containers have just up and run off with the mates to the socks in my unmatched-sock bag. The numbers come out about right.


3) How come, no matter how late at night I'm out driving, I always arrive at a stop sign the very same time someone is driving through the intersection, but there is no one to be seen before or after them for miles? This is so strange to me - why do I arrive at a deserted intersection at just the same time as the only other driver out and about?

4) Can you take a doctor seriously when he looks like the bad guy in an Arnold Schwarzenegger movie? This is, of course, a reference to my son's surgeon. And I'm really just blowing off steam here - he's a very good surgeon who just happens to look like an actor. Who plays bad guys in movies.

5) How come a teaspoon of frozen OJ concentrate gets rid of the hiccups?

I'll save the rest of my many musings for another posting.

Friday Night Fun

Mr. Triumph and I went on an honest-to-goodness real live date with dinner and everything tonight.

An angel of a neighbor brought dinner and stayed to play with the kids and be with Tyler. That is big. When you have a child going through something like chemo, and they happen to have other disabilities as well, you can't just call one of the teens in the neighborhood to come and 'sit' for you. I admit, I was scared to leave Ty. I'm not sure why, but I've convinced myself that he can't do without me. She did a marvelous service for us, and I feel very refreshed and ready for the coming week. Thank you sweet neighbor!

It was so nice to sit down at a restaurant and enjoy dinner in the lovely weather on the outdoor patio. (hmm, could I fit another preposition into that sentence?) We thought about going to a movie because it's been so long since we've seen one, but we both wanted to visit the book store. This tells you what nerds book lovers we are. We had a wonderful evening.

I thought I'd just browse in the home section and stumbled on this book - an interesting concept.

Then I began looking for a book I'd heard about only recently, "Nourishing Traditions" and struck paydirt. I look forward to marking it up with my notes. I am very hopeful that Caralee will resume teaching her classes on using this book.

We have increased Ty's Goji consumption to 6 ozs three times a day. It seems today that his tumor is a bit smaller. I am forcing myself to wait until tomorrow to measure it - I want to hold on to the hope for tonight, at least.

We are busy using this next week to explore alternative medicine even further. I am not one to sit around and wait for the doctors to come up with something. The Tumor Review board is going to discuss Ty's tumor and treatment options as well as review his CT films again. We hope to have some answers in the next week or two.

In the meantime, we're doing whatever we can to get momentum back on our side and let this tumor know we mean business.

Okay, so it's not S-a-t-u-r-d-a-y Night and we didn't go dancing, but I couldn't help myself. It's one of Ty's favorites.

You ain't seen nothin' yet!

A first attempt at sorting the aforementioned thoughts:

Tyler's fever came back again yesterday morning - 102. We took him to the Oncology Clinic and they gave him a dose of IV antibiotics (Tazicef/Flortaz). They drew blood cultures and labs - again. They keep coming back negative.

Since we were there, the doctor decided we should do another CT scan to see if the tumor was still responding to the chemo treatments. This time we had to give him the IV contrast as well as the oral barium contrast. The surgeon wanted to see if there were any abcesses or lymph involvement to blame for the source of the fevers.

He has reacted to the water soluable contrast before, so they gave him some IV Benadryl and steroids first. After the scan, the doctor came in.

And he was different somehow. Bad news.

The tumor was the same size. The doctor feels that Ty has reached a plateau in responding to this chemo. Technically, Ty can only receive one more dose of the Doxirubicin before heart damage is a real possibility, but they want to save that option for the future. You know, just in case the tumor decides to come back with a vengeance after surgery.

Now we are back to square one with two, maybe three bad options:

1. Radical Surgery - remove the tumor (roughly the size of a large grapefruit) plus a 2 inch margin all the way around. Reconstruct his muscle wall with mesh and have a possible plastic surgery closure. This isn't to make his scar attractive, but rather to start the process of skin grafting. This means he may have a large, open wound for some time. Mr. Triumph and I are not in favor of this option because 70% of the time the tumor comes back.

2. Some other chemo - possibly Gleevac. This is considered experimental for his tumor type and usually only works if it expresses a certain gene. The other one is Tamoxifen - yes, the breast cancer drug. Again it only works if the tumor is estrogen related.

3. Cryoablation - freezing the tumor from the inside out with CT guidance. There is a risk of damaging nearby organs, a pretty high risk. Or, we could try radiation which will leave him at risk for developing a worse cancer in the future.

Don't all of these sound like great options to consider? We are increasing his Goji in an effort to do anything we can think of to help him.

As an afterthought, the doctor came back in and said that Ty's spleen was enlarged. To comfort us, he added, "But it's not like it's abcessed or anything." They drew more labs to rule out some viruses that may have caused the enlargement. We'll find out the results tomorrow.

My head has been spinning. I am glad that we are not going in for chemo on Thursday, but at the same time I am very disappointed, because it means that he's gone through all the hardships of the treatment only to have it fall short of expectations. How is this fair?

It isn't.

And I guess we're okay with that. We'll help Tyler through whatever comes his way. We are hoping, praying, believing that a miracle will find its way to Tyler. We will have quite the victory dance goin on over here when Ty kicks this tumor on it's butt.

There I go with my language again. Look out neighbor kids.
I'll just close with this message for the tumor: