Another Quick Update from Mom

William came home this morning! Round 5 - Complete!

He is doing pretty good, just a little fussy. He is having a CT scan, on Thursday, to see how much the tumor has shrunk and how difficult/simple the surgery will be. Then Aaron will take him into the clinic on Friday to check blood counts and discuss the scans with the doctor. Hopefully the resection will be in a week or two.

Please pray that the tumor has shrunk significantly, is easy to remove and for no complications.

Love, Angela

SCORE -- COUNTS ARE GOOD!!!

I just talked to Aaron, William's counts are finally good enough to start round 5! He was just admitted to Oncology and should start chemo sometime today. This is his last round of chemo before surgery. Please pray that the cisplatin he will be receiving will only attack the cancer and leave the rest of him in working condition (this is the one that ruins hearing). We are one step closer to cancer free!

After his counts bounce back, he will have another round of scans and then we will head to Houston for the resection (tumor removal - surgery). The last round of chemo, round 6, is scheduled for three weeks from now, followed by stem cell transplant.

Thank you for continuing to pray for our little boy and our family!

Love,
Angela
"Will & Reilly's Mom"

I'm Ba-ack...

...home that is. Got to go home last night and sleep in my own bed. My counts are looking much better but not quite good enough to start the next round of chemo on Thursday. I got a bag of red stuff and yellow stuff connected to my cyborg port, on Sunday; and now I'm moving at warp speed again! I have to go back to the blue castle on Friday for a quick scan and blood counts to see if I get some more chemo (round 5) or if my body needs a few more days of rest and rebuilding.

Thank you all for the prayers and best wishes; I can feel the love from all over the world.

Love,
Will

P.S. For the record, I never had an infection. I just wanted to hang out in the blue castle with all the pretty nurses. ;-P

Infection?

Here is the quick and dirty from the last couple of days...went to the ER on Sunday, feeling crummy, counts were low and low-grade fever. Received blood and platelets, did a blood culture to check for infection and spent the night in Oncology. Temperature never broke the 101 threshold and the culture came back negative so we went home Monday afternoon. The fever flirted for a couple of days but never went away, while drooling and chewing on fingers (teething? mouth sores from chemo? who knows?!?)...woke up from a nap yesterday with 101.6 fever -- off to the ER, again! Joy! Wait 3 hours for nurse to access port...take some Tylenol...wait some more...draw blood for blood counts and culture for infection...wait even longer...take some more Tylenol and antibiotics...by 10:30pm (six hours later), told blood counts are too low, will be admitted to Oncology floor "soon".

Here's where I digress...Ever heard the term "football time"? I remember as a kid asking my Dad for something (a ride to the mall, dinner, etc.) and told that there was only 2 minutes left before the football game would be over. Those 2 minutes left on the clock, for the football game, translated to 30 minutes of reality. I have come to realize that Football Time = Hospital Time. Soon ~= 2 hours...maybe 4 - 6 hours. I've learned to pack a peanut butter sandwich, multiple diapers (for each kid) and at least two bottles for Reilly, every time we need to go to the hospital. Okay, I'll quit whining. Thank you Lord that my child is still with us. I look forward to his future birthday parties, senior prom and watching him get married one day. Praise God that we are still on track with this protocol and experiencing only our second potential infection (some have had much worse).

With all that being said, William was admitted to Oncology last night, continuing with antibiotics and Tylenol, still feels pretty crummy (even after a three hour nap) and we haven't found out if there is an infection brewing or if he is just a regular, teething two-year old.

Prayer Requests: No infections, kick fever quickly, blood counts bounce back quickly to remain on protocol schedule (meaning starting next round of chemo May 15th)...start to feel better, in general. The antibiotics are kicking his butt; he just wants to sit in Daddy's lap instead of running around like his regular "Wild Man" self. :) Also pray that Reilly kicks his cold (a nasty stuffy/snorty nose for over a week) and thrush (been taking drops to take care of the infection in his mouth).

Thanks for continuing to pray.

Love,
Will & Reilly's Mom

Parental Status - Take Two

There are two questions that Aaron and I get pretty frequently: 1. How can we help? and 2. Is there anyway to donate blood "for William"?

I'm going to start by answering the second question because Aaron did the research on it today. If you would like to donate blood "for William"...and I put it in quotes because there is no guarantee that your specific blood will go to Will when he needs the next transfusion but he will get "credits" with Carter Bloodcare (one donated pint in William's name = one pint we don't have to pay for)...you just have to know William's full name, our home address and phone # (which we will not post online) and William's hospital name (Cook Childrens Hospital). So if you decide to give blood and would like to donate in William's honor, email us at toughblondekid@gmail.com and we will send you the information you need.

Back to the first question of how to help...we really appreciate the disinfecting wipes, paper towels, plasticware, paper plates and gift cards. We are using the Starbucks cards about as fast as we get them (did I mention that we are both caffeine addicts and there is a Starbucks in the hospital), the Walmart and Target gift cards are going towards groceries and diapers and the restaurant gift cards are a nice treat when Will's counts are good and we can be out in public, as a family. By the way, we are getting close to finishing up the first wave of frozen meals from friends...what a huge blessing! Another great outlet is called Lunch for Life (http://www.lunchforlife.org/). They've been aggressive in finding and funding new research for a cure for neuroblastoma. This fundraising program is a simple but powerful solution: they ask people to donate one day’s lunch money to the Children’s Neuroblastoma Cancer Foundation (CNCF), a public charity dedicated to curing this cancer. We think it is a great cause and feel like we have already benefited from some of the research funded by Lunch for Life.

Finally, the picture of smiling Reilly, promised by Will:

Love,

Angela

Round Four - Mission Complete!

The nurse-lady pulled the plug from my cyborg port at 11:00pm, on the dot (as scheduled)...Daddy already had the car packed and parked in front of the castle...and the discharge paperwork was ready to go! With lightning speed, we arrived at home at 11:16pm! Four Keno rounds down and two to go!

Thank you all for the continued prayers, gifts, love and support! Love, Will

P.S. Did I mention that I taught my little brother how to smile?!?! Daddy will have to post pictures later.

Round 4

William reporting here, from the big blue castle again -- Mommy and Daddy call it the "how spit tall"...whatever that is. I have noodles attached to my cyborg port, like the last time. Unfortunately, this time it has to stay attached for 72 hours straight. I don't know how to count to 72 yet but I think it is like FOREVER. No leash-less breaks for this dude!

Well, not much to report today. I've had a couple of technical issues with my noodle but otherwise I'm smooth sailing through another round of Keno. Hang in there fellow borgs...I'm on the downhill slope!

As you were...

Bald is beautiful

Group Shot at the NB Walk for A Cure

We Love you Colleen. Thank you so much for your help.

William Is such a good big brother

Brothers dont shake hands, Brothers gotta hug!

We go back to the hospital for round 4 tomorrow. Please keep William in your prayers

A note from Mom...

Well, I'm back at work after being off for 12 weeks with all of my boys (ahem, men...sorry Aaron). I thought I would drop a quick note so everyone will know what is going on.

Aaron is at home with William until he can go back to daycare and dropping off Reilly at daycare, for a majority of the day, so he can keep up with our crazy 19 month old. Reilly is slowly adjusting to daycare, with the lights and noises that come with it; and, he has been sleeping through the night for a couple of weeks now.

William's next clinic appointment is this Thursday. They will check his blood count to see if he is ready to start the 4th round of chemo. This is the last, new chemo cocktail (meaning, his two chemo rounds after this are all drugs we've used before) and we have a little anxiety about how he will react to it. Please continue to pray that his blood counts are high enough so we can continue in a timely fashion, that the chemo only destroys the cancer and that he doesn't have an allergic reaction.

Thanks again to everyone that has supported us (with prayers, food, cleaning supplies, visits, etc.)! We appreciate all of you!

OOOOOOver the Hump!

Round #1, check... Round #2 , check... Round #3, CHECK! I am over the hump with only three rounds to go. Especially if you count the "first" round of chemo, I'm WAYYYYY over the hump. (That one didn't count because they increased the dosage.)

Yep, I'm basically a veteran now. *STRETCH* Whenever I see a young whipper-snapper brought in with a similar condition as when I first arrived, I try to remind them this is the best place for lil' warriors like us. It's hard at first with so many unknowns but doctors, family and friends, unseen or not, make things easier. I also tell them about all the cyborg enhancements we get to fend off the "beast". Ok, so I don't actually don't tell them all of this but I know people see me playing and smiling sometimes, and that's enough to let everyone know I've won another battle!

The doctors really are a lifesaver!!! Hahaha! (Get it? Doctor... life... save..er? Ok, moving right along....) On my Daddy's behalf, Dr. Duncan gets a shout-out for reacting so quickly when I had a bad reaction to my first blood transfusion. Bad reactions to blood transfusions are rare but Dr. Duncan was on his A-game and took immediate action. :) My Daddy and I thank you.

Leighann Masters from Mommy's work, Lockheed Martin, gets love for organizing a fund and collecting money from California, Georgia and Texas. I'm not too sure where any of those places are but I hear Texas is bigger than France.

The 2nd Annual "Walk for a Cure" was held on Saturday, April 4th 2009. "Walk 4 the Cure" was started to raise awareness and support for Neuroblastoma. The attendees got free lunch with registration and they had kid's activities so it was fun for the whole family! I was in the hospital with my chemo treatment but Grandma was there for me!

And the last shout-out I have is... for "The Razorback Wrestlers", I guess they like Arkansas but I'm not sure. Hey!, Arkansas is renewing their old SWC rivalry against A&M in the new Cowboys stadium this October.... anyways... "The Mr. Razorbacks" are literally wrestling razorbacks at the "Texas Hog Wrestling Championships" near San Antonio FOR ME. I'm telling you... being famous isn't all bad. People keep sayin' it'll go to my head but I figure if you know it's going to your head, and you don't let it go to your head then it's ok to let it go to your head and enjoy it! So thanks, "Mr. Razorbacks"!

Oh wait, not done... Thanks to everyone at my Daddy's work! They donated over 200 hours so Daddy could spend more time with me. (Mommy's going back to work April 16th.) It's a new era for me because not only will Mommy be going back to work but my Aunt Colleen is leaving a few days after Mommy begins work. :( The blow is softened only because my Daddy's co-workers were so nice and gave up their hard-earned free time.

I didn't even tell y'all about the battery acid I had to drink last week. *YUCK* Have you ever stuck your tongue to a 9-volt battery? Me either..... but I HEARD it tastes a lot like the stuff I had to drink. *sigh* They've got this giant thing-a-ma-jig called an MIBG and I have to drink the "battery acid" so the MIBG can get readings from my body during the scan. (Things are looking good by the way, no surprises.) I also had a CAT scan as well.

And to all those clamoring for a shout-out in my hopeful and thankful, stylized musings... we're still accepting gift cards to somewhere we can purchase diapers. Also, the paper plates have been greatly helpful. Thanks to everyone!

Home sweet home!

Hi guys!
It's sure been nice to be home for a couple of days. Good food (Yummy grilled cheese!!), good company (okay...so me and Reilly's bath wasn't that bad....) and all the tupperware in the world to bang and make louds noises!! But I have an appointment tomorrow morning and we're all hoping for a 500 blood count so I can start chemo this Friday! This is round two! After this round, the doctors are going to do a scan so they can tell how much the tumor has actually shrunk! Just thought you should know!

-William (the cutest little boy on planet earth...or at least my aunt thinks so....)

Now you feel it, now you don't!

At least that's what the doctors say when they feel around on my tummy! Amazingly, the mass has retreated to the point of undetection, and I'm barely a third into my chemo treatments! High-fives for everyone!

Or, if you're not into high-fives feel free to use a suitable replacement such as paper plates, Clorox wipes, gift cards to Target/Wal-mart, Starbucks...... or a Playstation 3. *sigh* Ok ok, so those aren't really high-five replacements but Mommy says those are the things we need most if someone asks and is absolutely determined to contribute.

Time is in short supply for my family ever since we brought home Reilly (he's well over 8lbs by the way!); and also my recent rise to fame has been time consuming as well. Paper plates are super easy to clean. In fact, they seem to clean themselves! Daddy throws them in this thing called a "trash can" and then they magically reappear in the cupboard completely clean. I haven't figured it out yet... but when I do I'll make tens of dollars! Clorox wipes are a must because my chemo treatments leave my immune system fatigued. We go through like a billion a second. I hear that's a lot unless you're the government spending money... but I don't really know what I'm talking about so please don't take me seriously. :)

Walmart/Target cards are great for diapers, food and all the stuff needed to keep the routine going. A new part of my routine is getting a shot... from a needle... I hate needles. It's kind of a big deal and it's basically not awesome but it's supposedly good for me so I tolerate Mother's insistence.

I realize Starbucks sounds odd but when you spend a gajizillion hours in the hospital it's nice to have a cup of coffee. Not that I would know... I literally haven't touched the stuff in years. HONEST!

Other than that, things are good. Mostly... Grandma bathed Reilly and me together. SOOOOO embarrassing. But she's nice so I gave her the biggest smile. :) Daddy has been getting back to work. My Aunt gets to stay till June. *WHEW!* Thank goodness for her help! I've got 4 more heavy chemo treatments, then they remove the mass and then I get two bone marrow transplants. Then I shall grasp victory by sheer force of collective will, prayer, love, thoughts, support and mashed potatoes!

Home Sweet Home!

Ok, ok, ok, ok... Good news first! I get to go home on Tuesday!!!!! Bad news, the doctors say the tumor inside my belly has already shrunk and they think the tumor is wholly self-contained.... Oh wait, that's good news! Even better, they say it responded much more easily than expected; especially for the originally lower dosage. Speaking of...

On Tuesday, I will have just finished my first round of chemo, the strong stuff, in 5 days. I then get to recover, smile and be at home for over 20 days. Then it's another round of chemo, rinse, repeat for 9 months. Afterwards, they'll take a look at my expectedly dminishing tumor and decide the best way to remove it. But right now, I'm just happy to be going home.

Before I do, a few things.... Some of the past few days have been pretty good! In fact, this past Saturday late night was a turning point. Somewhere around midnight I felt like playing Hide'n'Go-Seek. (It had been awhile.) Anyways, wouldn't you know it.... Papa was happy to play with me! :) He's funny. But he's not very good at hide'n'go'seek. I know the trick. All I have to do is cover my eyes and he can't see me anymore... GENIUS. Invisibility is awesome! But he's a good sport, so i gave him a high-five for playing with the big dog, that's me. Then I went back to playing with my cars.

Oh my, I forgot to mention the grand homecoming awaiting to be graced by my presence. I have heard stores about all the kinds of help being offered to me and my family. They've scrubbed my house sparkling clean and free of any potential germs. This is enormously important for my health and chemo-ill-affected immune system. I hear they've cooked too! So to all of you, thank you so much for your prayers, travel, thoughts, cooking, cleaning, love and anything you've done to try and help me, my Mommy and my Daddy. We feel very blessed.

*CHOO* *CHOO* Little William that Will....

"Little Engine" is possibly one of my more favorite stories, not quite sure yet because I haven't actually read the book. Maybe I should get my own book. Especially since I'm now Stage 3! But just so everyone knows, my neuroblastoma is "high risk" which is worse than "intermediate" but Stage 3 instead of Stage 4 is huge. Like giant mound of mashed potato good. Roller coasters might be scary but they surely aren't always bad.

And more good news, a few days ago I smiled for the first time since I've been sick! It made everyone SOOO happy they started taking pictures. *sigh* It's hard being famous. Especially since I've got a new keyboard to practice my awesome piano skills, and it's no Fisher Price keyboard either!

Let's see... what else is going on with me... Since they've upped the intensity of my chemo the doctors do expect me to have some hearing loss. It's not the best of news but it's wayyyy minor compared to being Stage 3! And besides, hearing isn't needed to hear love, well wishes and prayer. I will say this though.... if hearing loss becomes something I have to deal with, I'm requesting a GI Joe hearing aid! So now everyone knows, and knowing is half the battle. :) (HEY, I smiled again!)

p.s.
I apologize for my muse. It's so hard to find good help.

Rollercoaster

Good news, bad news, good news, bad news.... up and down I go. I'm not tall enough to ride a roller coaster, unless Grandma buys 6-inch flip-flops like she did for Mommy at Six Flags, but I think I understand the sensation and its lure... also, I sort of have my own roller coaster. It's not always fun, like today, but everyone seems so thrilled to ride with me!

The latest roller coaster news is a bit of a dip. It feels deeper than it should because I was up so high from the latest news about maintaining Stage 3. This morning, my doctors re-categorized me as Stage 4, and I'm now high-risk as opposed to intermediate. My passengers seem to feel the news more than me, especially Daddy because he sits with me in the VERY back of the roller coaster. For those of you without 6-inch flip-flips to ride a roller coaster, the back of a roller coaster usually descends from a peak much more quickly than the front. This means Daddy experiences all the valleys of my roller coaster trek more than anyone else despite the fact all we want to do is get off the coaster and go for cotton candy, funnel cake, turkey leg, fried oreos.... maybe all of them? No no, he's a good Daddy. He'd frown, shake his head and say something like, "Those are bad for you. Now pick 3 of the 4 and don't tell Mommy." YUM!

So how'd my coaster get to this precipitous drop? *sigh* When the doctors originally started me on this chemo-thing they were expecting certain signs of its effectiveness but unfortunately those signs were either not prominent enough or non-existent. When they first started it, my Daddy thought the chemo looked like Tequila. Anyways, I guess they forgot the worm and now my chemo dosage and schedule have changed. I just hope they include the worm this time, or at least Jameson, Daddy knows I'm Irish.

I'm still a little hazy on the treatment and scheduling but the way I understand it....

My total treatment will be 9 months, this includes chemo and two bone marrow transfusions. I was worried about a bone marrow match but the doctors will use samples of my own bone marrow for the transfusions. I asked about running out of samples but apparently the stuff regenerates so no need to worry. Afterwards, they hope to remove this unwelcome tissue from my tummy.

*WHOA* Sorry, even though the coaster is on its way down we sometimes have lil' upswings. The old dosage of chemo is finally leaving my body and allowing me to recover. I am talking more which is nice... don't get me wrong, this "interweb" place is neat and all but I'm much more interactive and WAYYYY better looking in person.

HOWEVER.... I'm not quite as good looking as this other guy I saw recently. I couldn't see him at first with all the blankets and stuff, but I asked, "What's that?" and I was informed "that" was my brother, Reilly! I don't know much about my little brother; he is stubborn about eating (gets that from Mommy), he's smaller than me and I could totally take him, he gets to go home and he's doing quite well. *WHOA* Yeah, that was another upswing.

Up or down, I hope you continue riding with me... but you can't have my Daddy's seat.

Post Biopsy: Stage 3 and Holding

I'm stage 3, which is good! The doctors use "stages" to categorize the differing degrees of my condition. The biopsy was a success. I do indeed have this thing called neuroblastoma. Apparently they can discern quite a bit by simply examining the tissue with the naked eye. They will continue to do analysis on the tissue and provide additional results over the next 7-10 days.

Interestingly, with all these tests and checkups, they almost seem to try and place me into stage 4 but my test results won't let them. This means my stage 3 is well-earned and stage 4 becomes more and more distant with each test. *HIGH FIVE* My bone marrow is clean, which is super-duper-mashed-potato good. They're also taking a detailed look at my bones for an extra-triple-check-re-check-confirmation of my stable condition but the tests won't be in till Friday.

I've also changed rooms again, I think... I'm still a tad groggy. There's less contraptions in this room, so I think that means I am out of the ICU. *whew* I think my family was a little scared by all the tubing, tape and hardware attached and inserted all over my body... but I preferred to think of myself as a fantastical cyborg in the making! They even attached a semi-permanent "port" near my neck and shoulders. It's actually more of a convenience than an annoyance. This way, they don't have to restick me every time I need a medication, fluid or super synthetic cyborg juice. Cyborg or no cyborg, being stuck with a needle is no splash'n'fun at the kiddie pool!

Friday is a big day for me, I'll be starting Keno. I didn't think I was old enough for Keno but I'm a trooper... a CYBORG trooper! Wait a minute.... ah, ok... it's not Keno, it's chemo which is short for chemotherapy. Chemo supposedly has some negative side-effects, and I heard one of them might be hair-loss. I'm not too worried about it because... how many cyborgs do YOU know with hair? Uh huh. Anyways, I'm not worried because I know this is the best/fastest way for me to get better, even if it hurts a little. But most of all, I know I am not alone.

So, when you come see me, try not to be too jealous of my varying levels of cyborgness.

From Sedated Dreamland

*yawn* I got moved to a new room recently. It's not so bad. I get to dream a lot. There's all kinds of gizmos, gadgets and whatch-ma-call-its.... all related to my blood transfusion. The allergic reaction I had to my blood transfusion complicated things just a tad. The biopsy was scheduled for Monday but is being postponed until tomorrow (01/28). This all might sound bad but the doctors seem confident this latest obstacle can easily and safely be surpassed.

One of the contraptions is called a "respirator". They used the respirator to flush out my lungs and alleviate the reaction from the transfusion. To expediate the respirator's effects, they medically induced paralysis so I wouldn't squirm or interrupt the respirator's flow with my own movements and breathing. When the machine was first started, it sounded like a motorcycle! (Daddy used to own a motorcycle... until Mommy made him sell it.)

As of right now, they've decreased the respirator's usage and have finally let me breathe on my own, at least partially. They still have me slightly sedated so my squirming is minimized. So, that's why I'm writing to you from Dreamland! You may now be impressed.

My dreams are of happy stuff. I don't remember all of my dreams but I know they include a few things like.... smiling family faces, the dog, angry family faces that really want to smile and green-bean-less-mashed-potatoes. Daddy reading this?

Things are a bit blurry whenever I open my eyes, the sounds are muffled but I can recognize some of the voices.... my Daddy's voice is easy to spot, it's always full of brightness and love, even when he's sad; my Mommy's voice is steady and sure, she never seems scared; two voices are more recent... it's Grandma and Grandpa from far away, maybe they brought me treats like they always bring Daddy!

The other thing I hear in Dreamland is a constant sound, almost like a tangible vibration. I tend to feel it more than I hear it. It is calming, reassuring and gives me strength. This is all in Dreamland so I can never be sure, but if I had to guess... it sounds and feels like prayers.

this just in...william aaron reporting...

hey y'all! this is william.

i kinda had a bad reaction to the blood transfusion last night. after having some trouble breathing, the doctors decided to move me down to the ICU. they put me on a breathing machine and they are monitoring my breathing and blood pressure, so i'll prolly be here about a week or so. actually, they just did an ultrasound on my heart, which is different from the ultra loud planes my daddy works on.

my cheast x-ray today was much better than it was last night, and the doctor just said that they are gonna try and let me breath on my own soon! because i'm here, they can't do the biopsey on my tummy like we were planning today. and we will prolly have to wait a little while to start chemo. but i'm here with daddy and he is holding my hand and reading my favorite books to me. please pray that my lungs heal fast so we can start fighting my neuroblastoma.

mommy is doing better. she is being released from the hospital today. my little brother reilly is super duper cute! he looks different from me and has dark, crimpy hair!! he is still in the ICU (I see you too reilly!) but stable and working on his california tan (he gets to use a cool heat lamp). mommy can't wait to hold him. he will prolly be there another week. please pray that he heals up quick so he can go home.

it looks like baby steps on a looong road right now, so it's a good thing i have strong walking legs!

we will be uploading pics of me and reilly soon.

love,
william

Nero..pasta, Nuro...blastoff, Neurowhat?

Neuroblastoma is a cancer which affects kids like me.

I often find big words like "neuroblastoma" are much less scary whenever I learn a little more about them. So, help me demystify this unknown beast into something manageable by learning with me.

Wikipedia Article
http://en.wikipedia.org/wiki/Neuroblastoma

My Hospital
http://www.cookchildrens.org

A Support Site (One of my nurses knows the kid on the front page! That's how fantastic and well connected my medical attention is!)
http://www.nbhope.org/

What Can You Do?

You can help me by sending prayers, well wishes and love!

Also... since, this has been a lil' frustrating for my family, especially since they don't know everything that's going on with me because the doctors have been reluctant to divulge specific information until my biopsy tomorrow.

So, if you could do me a favor and hold the phone calls until they get a handle on my situation then they might be able to give me an extra hug or two. But I know they still want to hear from everyone, so please free to email or read/post on my Blog!

You can email my family here.... ToughBlondeKid@gmail.com. This email will forward to my Mommy, Daddy, GrandParents and some other guy I rarely see.

(Oh, and you can also help by sending me some UT pajamas. My A&M pajamas are very itchy.)