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Monday, December 8, 2008 8:03 PM CST

A few beach pics….


Once again, he ran straight in the first night with all his clothes on!


Wind in his hair…


Sunglasses!


My favorite picture from the whole trip


Playing in the sand. His expression here cracks me up.

Thursday, September 4, 2008

Hi friends –
Most of you have probably given up on me by now and with good reason. Brace yourselves – you’re in for a long one!

We’ve been happily enjoying a relatively low-key, but busy summer. Jacob is talking up a storm now, and is perhaps the most independent, "has to do everything himself" toddler I have ever met (provided Mom's within eyesight, of course). I literally hear, "No, I'll do it" at least 200 times a day. And if you make the mistake of starting to help him with something, you can forget about him taking over where you've left off. He will literally undo everything you've just done and start over from the beginning. It's hilarious! I'm told one day his independent streak will make life easier – not quite sure that day is here yet, though! He has also become our own little hot-rod. A friend gave us their battery-powered car for Jacob to drive some time ago, and he's finally gotten into it this summer. Actually, it's a golf cart, and as anyone who knows my parents would guess, they think that is absolutely perfect! He is finally getting the hang of steering, which makes the whole experience a lot less stressful (no more leaping out of his path) and more fun for everyone. He loves to go out in the cul-de-sac and do donuts!

In between "driving," trips to the pool, and playdates with friends, we've managed to squeeze in the zoo, Children's Museum, splashing in Centennial Park, and a couple of trips on friends' boats this summer. We finally head to the beach in September, and I know Jacob is going to love it. He had such a ball seeing the ocean for the first time last year, and now that he loves sand too, he should truly be in hog heaven.

Little man officially started preschool three mornings a week this week. He definitely sheds a few tears at drop off, but then tells me what fun he had all day by the time I pick him up. And believe it or not, we already have our first homework assignment...a family collage. It's interesting the things you think and worry about after losing a child. Somewhere down the list for me has always been how Hayley's future siblings would handle the school/church/social situations that inevitably arise – the family portraits they’re asked to draw, the inevitable questions about siblings. Would Hayley be part of these? How would they handle it? How would we handle how they choose to handle it? After all, it's awkward enough for a 30-something who doesn’t want to scare new people off, yet wants them to "know" our first-born baby girl. And so it begins...Jacob’s first-ever preschool family collage. I'm sure the other parents won’t think twice about it, but for a parent that has lost a child, it definitely causes some angst – perhaps it is just the reminder that the physical presentation of our family doesn't align with the one in our hearts. Hayley is of course included (and Jacob won't think twice about it), but I wonder if my heart will skip a beat every time this type of "project" comes around or if it will ever just seem normal.

Another milestone survived was what would have been Hayley's first day of kindergarten. I have dreaded this one for a long time, but as is often the case for me, the anticipation was worse than the reality. I pretty much practiced "avoidance" on the first day of school – avoided talking to friends whose children were also starting, avoided seeing the school buses, etc. Not always the best method, but it made for a relatively low-stress day. Fortunately, these milestones come further and farther between as time goes on.

While we're on the topic of Hayley, we can't go without saying a congrats to our friend Merrill, who not only relapsed with AML since our last posting, but has already finished her radiation treatment and is back to "no evidence of disease" status. Hayley absolutely adored Merrill (they were hall mates on many long hospital stays), and we're so thrilled for her good news.

Onto the big stuff...I think if you talk to any "blog writer," they'll tell you that what you read on a blog is never the full depiction of reality. Whether a need to protect privacy, protect readers or whatever the case may be, there are always circumstances or events that aren't fully detailed on a Web site. I say that to preface that in many ways, it has been a hard year. I briefly alluded to our hope to have another baby, but I have not gone into much further detail. Suffice to say that after two chemical pregnancies (June and Sept. 07), we went the fertility route. After nearly a year of treatments, even two failed IVFs, we truly had to wonder what was meant to be. Surely, we were meant to be parents again - that I believed in my heart. But the dreaded "why" questions started creeping in, as they often do. I tried so hard to hold onto Proverbs 20:24, which in my paraphrased “mantra” counsels, "If the Lord is directing your footsteps, why question everything that happens along the way?" Wise guidance to say the least, but a thought that's not always easy to follow when life has thrown the experiences at you that it has. So, what next? We started researching adoption, talked to friends who had gone that route, attended seminars, even filled out our initial application with a selected agency...and then we decided to give fertility one last hurrah.

I have a friend who at first hoped – and now believes – that good things would happen to us on the 19th – as a way of "compensating" for Hayley's home-going on that same day. The theory seemed to hold some merit when we found out we were expecting Jacob on 10/19/05, although truthfully I hadn't given it much thought since then. Without getting into all the details, the number 19 appeared again and again throughout this last fertility cycle. Call it a heavenly sign or merely a happy coincidence. I don't really know, but it made my heart smile, and part of me knew it was meant to be. And so...we are beyond thrilled to say we are finally expecting our third baby this Spring. It's still a little on the early side (9 weeks), but we have seen the heartbeat twice now which is always such an amazing moment. I can't fully express how excited we are to meet the newest member of our family. At times, I'm still scared to believe it's real. And after all the difficulties, we go into this fully aware that it may well be our last child - or at least our last biological child - so I am really trying to treasure every second – nausea and all. As always, we welcome your prayers for our new little one, and hope you'll join in our excitement!

Last but not least, thanks to all of you who e-mailed and wrote requesting an update. It really moves me to know there are people out there still checking in on us. Hopefully, now you know why I wanted to hold out just another week! : - ) I promise a final update after we return from the beach (before moving to a family blog). Yes, it's time!

Enjoy the pics!

If you didn’t have a chance to see his two-year slideshow, click here. (It will take a minute or two to load on your screen, but it’s worth it!)


Loving the wind in his hair!


Not so sure about this raft thing...


Happy on the 4th!


Nothing makes him happier at the pool than a bucket and a watering can!


Exploring the “farm” at the Children’s Museum


Menace behind the wheel...


Watch out, world!

Sunday, June 1, 2008

For us, it was two years ago this past Thursday that the world started spinning on its axis again. That Memorial Day, a 6lb 3oz bundle of adorable baby boy reminded us how to feel joy again and re-assured us that our lives would indeed contain genuine, heartfelt smiles and laughter. While Jacob will never replace Hayley, he is a joy all his own, and has brought more love and happiness to our lives over the past two years than we can possibly express in words. I can honestly say I would be lost without him, and we thank God for the blessing of his presence every day.

I promise a full and complete update soon, but for now, here are some pictures!

First are a few photos from his two-year-old photo shoot with our wonderful friend and talented photographer, Alisha. I am amazed she was able to capture such great shots with a very busy two-year-old boy! You can watch the entire slideshow here (it will take a minute or two to load on your screen), but I posted a few of my favorite shots below.


Courtesy AGR Photography - Our crew



Courtesy AGR Photography - Happy boy!



Courtesy AGR Photography - He still can't ride one, but he sure loves to sit on them!



Courtesy AGR Photography - The best way to walk!

Less exciting are my few pictures from his birthday party celebration! We had a "real" party for Jacob this year with eight of his other two-year-old buddies at My Gym, a local place with tons of equipment for jumping, climbing and general toddler mischief! Thank goodness for video because my camera doesn't capture non-stop motion very well. We had a small family cookout on his actual birthday, when he finally decided he was ready for a party hat!


Hanging on the bars at My Gym



What toddler doesn’t love a gigantic ball?



Jacob is a huge Curious George fan, the theme for his party!



Finally deciding it’s fun to wear a hat!



Is this the coolest toy ever? A bbq grill for kids – one of Jacob’s favorite gifts.



Digging into his cupcake. Hmmm...this looks strangely reminiscent of last year!


Happy birthday, Jacob!!!

Sunday, April 27, 2008 8:56 PM CDT

Well, I've definitely reached a new low in updating. For the faithful among you who still check in and kindly remind me how delinquent I've been, thank you for caring. Rest assured, life in the Thomson house has been busy, but good.

Jacob had a ball at Easter. We went to brunch with the Easter Bunny, and though we were worried he would like him about as much as Santa, we needn't have worried. As soon as he discovered that the bunny had candy, we heard nothing but "hop, hop, hop" and "candy" for the rest of the day. Mom, Dad and the grandparents spent most of brunch alternating turns tracking down the bunny for one more piece. Not surprisingly, he quickly got the hang of hunting Easter Eggs later that afternoon, although he was far more interested in opening them than searching for more. I literally think he ate nothing but two pieces of cheese and candy the entire day. Good thing Easter only comes once a year!

In general, Jacob is talking up a storm now, and though not in complete sentences, he has picked up quite a few phrases. Hands down, my favorite is "hold you," which he says when he wants to be picked up. He melts my heart in a million pieces with that sweet sing-song voice. He is super affectionate and often runs up unprompted and declares "hug" while wrapping his arms around your neck. That said, he doesn't always give one when asked! One of his more amusing mis-pronunciations (or so we've come to view it) is saying "dye dye" instead of "bye bye." I have no idea where it came from as he says other "b" words just fine, but it has definitely created a few comical moments. For instance, when he is at the playground and joyfully shouts "dye dye" at the top of his lungs before hopping down the slide. I can only imagine what the other parents are thinking!

Without question, his favorite activity in the whole world is being outside so our swingset gets ample use and we visit the park several times a week. He's been in a Mom's Morning Out program two mornings a week for the past several months and is doing great. We've been thrilled by how rarely he's gotten sick - just two colds, knock on wood!

It's hard to believe he'll be two in little more than a month. It will be both bittersweet and exciting to have him reach the birthday Hayley never did. He recently "surpassed" her heaven-going age. Perhaps fortunately, we haven't had much time to dwell on that milestone. It is heartbreaking to think of all she never got to do and how much she had to endure. Just this week, we received a postcard for Hayley in the mail aimed at rising kindergartners. Ugh. It was definitely a jolt to my system and took my breath away. We still miss her so!

No baby news yet, which perhaps makes Jacob's impending birthday extra emotional, but thanks for the continued prayers.

In other big news, Alan and I celebrate our 8th wedding anniversary this week. We'll actually be celebrating at the Chris Daughtry/Bon Jovi concert Wednesday night. A former NJ girl and consummate 80s fan, I am quite excited! (Alan's just along for the ride!). Happy anniversary, honey! I can't imagine experiencing the highs and lows of our life with anyone else by my side.

If you're still with us, I hope you'll consider joining us May 4 for the second annual Hayley's Heroes at Lauren's Run. Over the course of 14 years, this 2K/5K run/walk has raised more than $2 million for pediatric cancer research. Once again this year, all funds raised will be directed towards CURE Childhood Cancer’s funding of life-saving pediatric cancer research at Children’s Healthcare of Atlanta and Emory University School of Medicine.

For full event details, please visit www.firstgiving.com/curechildhoodcancer. The online registration deadline is this Thursday, May 1. We’ll personally be participating in the 2K, but will be there to cheer on any of you 5K runners! As last year, we’ll have rainbow tattoos for the kids and willing adults. Don your pink and come out and join us! Or if you’d rather sponsor the event, you can visit our fundraising page directly here.

Thanks so much for checking in on us. I posted a few recent pics below.
Dayna, Alan and Jacob



Ding Dong! Anybody home?


Jacob digging into Hop hop's candy basket!


Our serious Egg hunter!


Found one!


I like the added challenge of throwing it in my basket from afar!


Got it!


Graduating to a big-boy swing!

Friday, February 1, 2008

I can't believe I'm more than a month late with Christmas pictures, but here they are at last! Jacob definitely got the hang of Christmas pretty quickly. Without a doubt, Jacob's favorite gift was the tent that was waiting for him in the family room Christmas morning. He literally climbed in and out of it all morning long squealing and dragging anyone he could find inside with him! Even a month later, we know a "chase"through the tent is the surefire way to elicit smiles and giggles.

While he was pretty taken with all the sights and sounds of Christmas, one person he wasn't too fond of was Santa! Though he would happily say "ho,ho,ho" whenever he saw a picture or ornament, Jacob wasn't willing to get within three feet of Santa in the flesh. We finally managed a picture on our second attempt by backing him into Santa's lap, but he wasn't fooled for long. Once safely back in my arms, he managed to give Santa a high five so I guess he wasn’t too traumatized. We definitely have a classic pic to remember it by.

And then...there was snow in Georgia!! I had literally just e-mailed a friend who returned from Vermont saying I feared Jacob might never see snow (as a former NJ girl, I grew up with a lot of it). Wouldn't you know...the next week, it snowed not only once, but twice – which is pretty much unheard of around here. Jacob thought it was great fun even if a bit chilly. He didn't quite get the hang of throwing snowballs, but instead created a new sport of "snowball basketball." He figured those snowballs were just one more ball to dunk through his hoop, a feat he performed over and over and over again. As you can imagine, Daddy was quite proud and I was happy to have a few less snowballs thrown at me.

Jacob recently started a mom's morning out program two mornings a week at a local church. He's adjusting pretty well, and so far, hasn't had repercussions of being sick – although I know it's probably coming. All in all, he’s adjusting better than I am. After dropping him off the first day, I cried the whole way home. He's getting so big!! After Hayley died, I swore I'd never be one of those parents who complained about their kids growing so fast, but here I am...simultaneously elated and sad about it. Never say never, right?

Jacob continues to build his vocabulary daily, and shocks me at the words he picks up ("lawnmower" being a current favorite). He does now say "circle," which for him comes out as "irkle" so I guess mis-pronunciations don't run in the genes after all. He is very into being a helper right now, and loves to assist when we do the laundry, sweep, cook and just about anything else related to taking care of the house. Ahh...if only that would last!

In other news, we would love for Jacob to be a big brother in '08 and appreciate all prayers toward that end. It's been a rocky road thus far with two chemical pregnancies, but we are staying positive and hope to have happier news soon.

Our hearts have also been heavy with the loss Jack Sanders earlier this month. Jack and his mom were some of our best buddies during our in-patient stays, and we will never forget Jack’s infectious smile, the way he teased the nurses and his love of animals, travel and photography. Please keep his family in your prayers as they adjust to the horror of a world without Jack in it. You can read a wonderful tribute to Jack that was printed in the Alpahretta & Roswell Revue & News by clicking here. We are definitely all going to have one amazing reunion in heaven some day, and I am looking forward to it more than ever.

Speaking of heaven's shining stars, Sunday would be Hayley's fifth birthday. It is almost beyond my comprehension that we should have a five-year-old running around and that it's been more than three years since we kissed and hugged her tight. We don't have any big plans, but I know five birthday balloons will find their way heavenward on Sunday, and I think we might just have to break out some playdough in her honor. Happy birthday, sweet girl! You are loved and missed every single day.



Happy in his tent!


Peek a boo! Peering out the mesh at the top of the tent.


Hanging out Christmas morning


Torture!


Someone rescue me!


Where’s this stuff coming from?


It got me on the nose!


Snowball basketball!

Wednesday, December 19, 2007

Three years ago tonight, heaven got a little brighter...

It's hard to believe it's been three years; hard to believe she'd be almost five. The anniversaries do get easier, but they're never easy.

All in all, we had an ok day. We got some fun stuff for the kids at the hospital, had a good lunch at the Loop (our favorite near-hospital spot) and added another angel ornament to our tree. Jacob kept us running all morning, and I have to imagine Hayley was looking down laughing. We miss that little stinker more than words can say...

I don’t have much energy to write, but know that we're truly humbled by all of you that remembered our little girl today and throughout the past three years. Thank you so very much.

And just because they make me smile, here are a few of our favorite pics that you may not have seen before (all from Hayley’s first year).


Ready to come home from the hospital. You really can’t appreciate what a peanut she was at this point…only 4 lbs 5 oz.!


One month...sweet cheeks


Heaven shining down on her…(and reaching the 7 ½ lb mark).


First smile on film!


Around six months...chunky monkey with Daddy’s cap


Pretty girl at eight months


The cutest Spot ever!


Who is this man? Christmas 2003


Happy girl in front of the tree. We may never have a Christmas card photo to top this one.


Our special birthday girl

Sunday, November 11, 2007 8:35 AM CST

At long last, meet Captain Jacob!


An afternoon snack to gather his strength...


What's in this thing anyway?


Our little pirate actually got into Halloween more than we thought. After a trial run at our next door neighbor's, Jacob totally got the hang out of walking up to each door and waiting for the candy. Only problem was he wanted to walk right into everyone's house and go exploring!

After five or six houses, we made the mistake of giving him a blue lollipop from his loot. Well, he loved it, but he wanted nothing to do with trick or treating after that. He just wanted to ride in his car and eat that lollipop (and let me tell you, they last a LONG time!).


Still enjoying the lollipop and content to answer the door!


Post lollipop kiss from Nana! (check out his shirt)



My favorite pirate!


Earlier in the month, Alan and I got to escape for a wedding weekend in DC. We got to hang out with some of Alan's old high school friends and dance the night away. We hit the Air & Space museum before we left, where Alan delighted in hanging me upside down in the F-4 fighter simulator. My role as a "gunner" at that point was pretty much lost as I couldn't stop laughing, and we both failed in our "mission" to save the world. We'll do better next time!




The weekend before the wedding, we went pumpkin picking up at Burt's. My efforts for the perfect photo were completely in vain and mostly amounted to Jacob running in the opposite direction of my camera...case in point, below! He definitely thought the pumpkins were cool, but heck if I could catch him with a pumpkin and a smile at the same time.



I did, however, catch him trying to eat a few!!




We had an awesome time in Hilton Head back in September. The first night we arrived, we decided to go ahead and take Jacob down to the beach. We had a hunch he'd love the water (especially since we stopped at a rest area with a small lake, and he tried to jump in at every opportunity!). We weren't disappointed. Literally, as soon as he "spotted" the ocean, he took off running at breakneck speed, just laughing, grinning ear to ear and spraying sand in his wake. It was TOO cute! He literally ran right into the water, and then wasn't quite sure what to think. It really is my favorite memory from the trip.



The whole week was a great relaxing retreat. We mostly just hung out on the beach, but did rent bikes a few days and played at least four rounds of miniature golf. And Alan and I broke the 10-year family beach paddle ball record with a whopping 375 consecutive hits. (Hopefully someone out there knows what beach paddle ball is because the few people I mentioned it to returned my excited expression with blank stares) We impressed ourselves if nobody else! All in all, it was a wonderful week. Even better, something about the ocean makes me feel close to Hayley. Maybe it's just the very physical reminder that there’s something greater than us out there. I can't quite explain it, but it's there.

Jacob is getting so grown up and remains all boy. He loves to run around and climb on anything he can find. We signed him for a "My Gym" class recently which at least lets him hone his skills! He's been climbing up the steep ladder on his playset for months and loves to explore new parks and playgrounds any chance he gets.




He’s at the stage now where he tries to repeat everything we say and surprises us with a new word or two every day. His favorite words are still "up," "down," "out" and "woof" when he sees a dog. I hear those about 100 times a piece every day. He graduated this weekend from saying "Dada" to actually saying "Daddy" on occasion which is about the cutest thing I’ve ever heard! I have tried in vain to get him to say "circle." (Of course, I'm curious to see if he'll mispronounce it the same way Hayley did, but apparently, I'm never going to find out!). Just the other day, though, he did offer his big stuffed dog a drink out of his sippy cup, which totally made me cry. (Hayley was obsessed with feeding her dogs).

We'll be thinking of our sweet girl especially as the holidays approach. I think Thanksgiving will always be close to my heart because it was her last "good" holiday. I remember clear as a bell her trying to feed the wooden ducks Nana brought over and decorating the house (and everyone) with stickers!

I have to admit I am really looking forward to Christmas this year (although, of course, we'll have to get through the 19th). I'm thinking we're going to have to decorate the tree from about three feet up since Jacob already tries to "undecorate" all the trees he sees in the store. It should be interesting.

Hopefully, you can tell that life in the Thomson household has been pretty good over the past few months – even if I was horrible about updating! Wish us luck as Jacob takes his first flight at Thanksgiving. I'm sure we'll have some stories to tell! Here's hoping you all have a wonderful Thanksgiving and that you're able to pause a moment and really reflect on your blessings. We will be thinking about two of ours in particular! Thanks for checking in on us...I'll try to do better about updating through the holdiays...

Sunday, September 30, 2007 5:56 PM CDT

We just returned from an incredibly fun and relaxing trip to Hilton Head. I promise a full update in the next few days, but in the meantime, here are some pics from the trip! Jacob's reaction to the ocean was truly priceless!



Jacob running full force towards the ocean on the evening we arrived. Hands down, this is my favorite memory from our trip. You can see the sheer glee in his eyes!



And he promptly ran straight into the ocean - clothes and all (Daddy followed!)



Lounging!



Laughing at the waves



Enjoying what's left of his ice cream cone at Salty Dog Cafe



All of us squinting happily in the sun



Second favorite activity - climbing into the beach chairs and shaking the umbrella!



Practicing his forward roll form on the beach



Taking charge at the marina!



Ready for a ride along the beach with Daddy and Grandpa

Sunday, July 15, 2007 6:43 PM CDT

*** View Jacob's one-year slideshow by clicking here. The pictures were taken the first week of June in the coolest setting. It will take just a minute to load on your screen, but it's worth it (if I do say so myself)! Thanks, Alisha, for another awesome job and fun day.

Sorry I've been so remiss in updating, but no news is good news in the Thomson household. We actually survived Hayley's diagnosis age without much ado. Often times, for me, the anticipation is worse than the actual event, and that was definitely true this time. I feel fortunate that Jacob turned 13 months during the summer when viruses are less prevalent. Had he been sick during this period, I'm sure I would have been a wreck. He has not even had an ear infection yet – unbelievable!

Unfortunately, I can't say I feel this huge whoosh of relief. I'm certainly glad to be past it, but the truth is, you're never, ever safe. I have thought a lot about "what if" Jacob got sick with Hayley's cancer. Would his "odds" of recovery be any better? Sadly, for AML, the cure rates remain at 50 percent. That's definitely not a number you want to hear as a parent - anything less than 100 percent isn't good enough. We need more research!

Unfortunately, that truth has become even clearer as we've witnessed several friends relapse. Please send your prayers to Ryan Morgan (link above, battling neuroblastoma) and Ben Smith (www.caringbridge.org/ga/benjaminsmith), who recently learned he relapsed with ALL and AML. My heart breaks for these families, but I know they are mustering the strength and determination to move forward and beat this disease! Please add your prayers to their artillery. I know they would love to hear from you.

On a lighter note, we've been enjoying a low-key summer. Jacob's been on his first trip to both the aquarium and the zoo. He seemed to enjoy watching all the people more than the animals, but I imagine that will start changing in another month or two. The highlight of the zoo for him was definitely the goat's wagging tail at the petting zoo (picture below). He thought it was absolutely hilarious and would have spent all day chasing that poor goat around if he could!

We've visited the pool quite a bit, and Jacob seems to enjoy it more each time. Grammie and Grandpa's neighborhood pool has been a true child’s delight, complete with zero-entry pool, mushrooms and fountains erupting out of the concrete. He's even gone under a few times in the big pool and doesn't seem too bothered (although, he usually comes up sneezing!)

We did have our own 13-month catastrophe of sorts when Jacob fell down our stairs. Unfortunately, we don't have stairs with a landing halfway down so he tumbled down all 16 stairs straight to the bottom. His big sis must have been watching out for him because he didn't have one single scratch or bruise from the big fall, and was up walking around again in a matter of five minutes. Note to all parents – don't trust those "self-closing" gates!! I double check mine three or four times now every time we're upstairs!

Other than that, Jacob manages to stay busy running around the house all day. He is starting to truly love climbing, and I think he may have even surpassed his sister in his love of chasing the cats. He chases them until they take cover under our bed and then he has no problem crawling right under after them. Yikes!

We can't possibly describe how wonderful it is to see our little boy so full of life and energy. Hayley's non-stop hospital stays had already begun at this age and it breaks my heart thinking about all the wonderful things she missed out on experiencing. We firmly believe she's experiencing wonders beyond our imagination right now – and that truth is of some small comfort.

Enjoy the pics below and thanks so much for checking in on us!!


Enjoying the park swing!



Checking out the zebras!


This wagging tail is the coolest toy ever!


Fountain fun




Happy Fourth of July!

Tuesday, May 29, 2007 8:52 AM CDT

Happy Birthday, Jacob!! Can you even believe our little boy is ONE?

It was one year ago today at 5:58 a.m. that the world started spinning again for us. For the 18 months before, other people's lives went on, but ours had been obliterated with Hayley's death. And while that wound and missing will always be there, life since May 29, 2006 has gotten a little bit sweeter each day. I knew we would love him (that I never doubted), but I never believed we would know this level of joy again. I really had no idea that little boys could be so much fun!! Thank you, Lord, for the incredible gift he is to us.

So, what is our little man up to these days? Jacob is a full-fledged walker now (really took off at 11 months) and is constantly on the go. He manages to shuffle across the floor in no time, and I'm sure running won't be far off. Since we've let him go barefoot for so long, shoes frustrate him a bit, which is actually pretty humorous. He's recently discovered a love of ice (great for his erupting teeth), playing in the pantry and is still a water lover (no greater joy than the garden hose). He's not much of a talker yet - other than the requisite "mama" and "dada" - but manages to convey exactly what he's after.

We celebrated his big birthday this past Saturday with a small, but festive family party. As you'll see from the pictures below, he was not the least bit shy with the cake! He doesn't get sweets often, so when he does, he grabs what he can as fast as he can! We all voted that Daddy should be the one to pick him up!

Enjoy the pics, and thanks for celebrating with us! Thanks too for your prayers as we approach Hayley's diagnosis age (just shy of 13 months). My head knows he's just fine, but sometimes the heart forgets...
Dayna, Alan & Jacob

PS – See previous journal entry for Lauren’s Run pictures. Thanks to everyone who came out!


Digging ice out of the cooler (his favorite party activity)


What’s next?


Digging into the cake!


This is fun!



Gotcha!


Just to prove I was there (and avoiding the frosting)



With his great Aunt Cheryl after a wash-off splash in the pool (note the blue nostrils)!

And just to prove he keeps us on our toes...

Can you find Jacob in the pantry?


TP party!

Tuesday, May 29, 2007 8:49 AM CDT

Thanks to everyone who came out for Lauren's Run earlier this month. We had a great turnout – about 40 people in person (proudly sporting their rainbow tattoos!) and several ghost walkers. It was truly a fun, family-centered event for a great cause, and we can't wait to do it again next year. We had the added treat of feasting our eyes on Little Miss Izzy (Catie's little sister) and being able to say hi - even if briefly - to some of our cancer buddies. Here are a few pics from the day...


Mom, Dad & Jacob


A tribute to our sweetie along the course


Jacob with Jill George, director of family and patient services at CURE


These pink balloons are fun!

Tuesday, May 29, 2007 8:49 AM CDT

Thanks to everyone who came out for Lauren's Run earlier this month. We had a great turnout – about 40 people in person (proudly sporting their rainbow tattoos!) and several ghost walkers. It was truly a fun, family-centered event for a great cause, and we can't wait to do it again next year. We had the added treat of feasting our eyes on Little Miss Izzy (Catie's little sister) and being able to say hi - even if briefly - to some of our cancer buddies. Here are a few pics from the day...


Mom, Dad & Jacob


A tribute to our sweetie along the course


Jacob with Jill George, director of family and patient services at CURE


These pink balloons are fun!

Monday, April 16, 2007

Friday, May 4
*** If you're joining us at Lauren's Run this Sunday, look for us in the vicinity of registration with pink balloons tied to Jacob's stroller. We'll have rainbow tattoos for the kids and willing adults! If any of you ladies have pink workout attire, feel free to wear it in Hayley's honor, but it's definitely not a requirement! See you there!***

Hi friends - It's been a busy month, full of firsts! (pictures at end, I promise!)

First steps: Believe it or not, Jacob took his first steps at 9 ½ months. He has actually taken one or two steps every day for several weeks now, but that seems to be as far as he’s willing to go. If he's really after something, he’s still far more efficient on his hands and knees! Now, if you hold his hands, he'll practically run into the next room, but he's not quite so brave on his own. He is still into everything (especially cabinets, drawers and the dishwasher) and has managed to become quite a proficient stair climber too (Yikes!).

First stomach virus: Unfortunately, Jacob also had his first bout with rotavirus a few weeks ago. It is a rough virus on little kids and it took a full six days to get it out of his system. Fortunately, he was a great Pedialyte drinker and we didn't have the major dehydration issues that a lot of kids suffer from. And after the second day he was content to play in between "bouts." All things considered, we handled the prolonged sickness with our sanity in tact. Hopefully, now we can get past the 12-13 month mark (Hayley's diagnosis age) without any major health issues (knock on wood).

First crank call: Like most babies, Jacob loves to play with real household objects – namely the phone and the remote control. I've never really worried about him playing with the phone since it requires you to turn it on before dialing and even most adults can't figure it out! Imagine my surprise one afternoon to see a police officer walking down our driveway! It seems that Jacob not only managed to turn the phone on, but then to dial 911 in order and hang up! If I'd had my wits about me, I would have gotten his picture with the police officer, but alas, I wasn’t thinking fast enough. Needless to say, we've been watching him with the phone a little more diligently.

First Easter: Jacob thoroughly enjoyed his first Easter, although he was less than thrilled with a visit to the mall Easter bunny. Mom and Dad were kind of grumpy after waiting in line too since we were sandwiched between two adorable four-year-old girls (the same age Hayley would be). But Easter will always hold an extra special place in our hearts as it's our assurance that we will one day see our sweet girl again. Thank you, Lord, for your incredible sacrifice...

First teeth: Finally, two bottom teeth!

First haircut: I can't say Jacob was crazy about the process, but he sure looked cute afterwards! He is looking so much like a little boy these days. It is such a thrill to watch him change each day. It used to make me so sad after Hayley died when people would talk about their kids and say, "they grow so fast" (although granted, it is true). My first thought was always, "If you're lucky. If you're very, very lucky." So while a small part of us is sad to see him grow and would love to keep him this age forever, we truly feel fortunate and blessed to witness the changes.

And that pretty well sums up our month. If you've stuck with us this long, we'd like to invite you to join us for what will be Jacob's first walk this May. As part of its ongoing efforts to eradicate childhood cancer, CURE Childhood Cancer is putting on a 5k race, 2k fun run/walk called Lauren's Run. The event will take place on May 6th beginning at 8 a.m. in Piedmont Park. It is family friendly so bring the kids and enjoy the day. This race has a long and triumphant 13 year history, but this is the first year that all funds raised will be directed towards CURE's funding of life-saving research at Emory University School of Medicine and the AFLAC Cancer Center at Children's Healthcare of Atlanta.

We have formed a team in Hayley's memory called "Hayley’s Heroes," and we'd love to have you join us! The online registration will give you a "Team Name" option. You can also register and be part of the team, but as a "ghost runner" if you're unavailable that day. Pre-registration costs are available now and are $20 for adults and $15 for kids 16 and under who want to run/walk. There are also special family rates, and a ghost runner rate of $25 (to cover shipping of your T-shirt).

Below is the link that has all the details and will allow you to register for the event. Be sure and send us an e-mail if you decide to participate so we can keep you informed of any team-specific details and look for you the day of the race. As a sidenote, I imagine lots of Caringbridge families will have teams, so we hope to see you there regardless of what team you're on!

Hope to see you on May 6th, and thanks, as always, for checking on us and for joining us in the fight on childhood cancer! Enjoy the pics...

Alan, Dayna & Jacob

http://www.active.com/event_detail.cfm?event_id=1415407






Happy Easter!



Shaking eggs was Jacob’s favorite part!



Playing rock star after finding sunglasses in his Easter basket!



Haircut trauma (this was the happiest he was the whole time)



Post-haircut cutie!



Doing the Mohawk! (Nope, not a Sanjaya fan!)



Pro stair climber!

Friday, March 9, 2007

Ok, my definition of updating "soon" is questionable...sorry! Can you even believe Jacob is already nine months old? He has literally taken off over the past four to six weeks. He graduated to hands and knees crawling, is pulling up on every surface in the house, is cruising down the furniture and trying hard to perfect his "hands-free" balance. It makes life particularly interesting when he tackles all these skills in the bathtub...he even attempted snorkeling the other day (yikes)! He is always on the move, and we spend most of his waking hours protecting him from his fearless exploring and laughing at his latest antics.

The docs declared him perfectly healthy at his 9 month appointment. He is up to 21 pounds and nearly 29 inches – 70th percentile for both. At this age, they do a hemoglobin stick in the heel (something new since Hayley), and I was relieved to see perfectly normal red blood cell counts. I know as he approaches the one year mark, my anxiety will get the better of me, but for now, he is doing great and we are so thankful.

February was fun for Mom and Dad too. We got to dance the night away at CURE Childhood Cancer's Valentine dinner dance and then escaped the next weekend to a friend's wedding in Charlotte. So, after not having been dancing in probably five years, we managed to hit the dance floor two weekends in a row! The first week of March, we enjoyed a visit from Alan's aunt – all the way from Hawaii, and Alan just returned from visiting family in New York this week while on a business trip. It's been a whirlwind.

Our big news (nope, not pregnant) is that Nana is moving from Wilmington, NC to Georgia! She's building a house in a new community on Lake Lanier, so we're excited to live vicariously through her in the construction process. And of course, we'll all love having her closer. The best news (ha, ha) is that the house won't be ready until fall so we can still spend the summer visiting her at the beach – hooray!

Here are some new pics so you can see how our little fella is growing. Granted, he looks a lot like me, but every now and then, I see a little glimpse of Hayley (and Alan) in him!

Thanks for your thoughts, prayers and for checking in!

PS – I believe there’s still a critical platelet shortage in Georgia so please give if you can.



Riding in his push car with Dad



Up...


Up...


and OVER!



Mom, Daddy's home (and hey, check out my latest place to pull up!)

Monday, February 5, 2007

We managed to have a mostly happy day on Saturday, with the occasional, expected tears. I donned my favorite pink shirt, Jacob sported his dog sweater, and Alan managed to find a pink cat sticker to wear in honor of Hayley. While Jacob was napping in the morning, Alan headed to Publix to pick up four pink birthday balloons. You'll never believe the song that was playing over the grocery store speakers as the balloons were being filled with helium. It's an old Ronnie Milsap song neither of us had heard in years, and Alan immediately found it on iTunes for me when he returned home. Here's an excerpt of the lyrics:

"...Maybe my heart will never mend
But I'm glad for all the good times
'Cause you brought me so much sunshine
Love was the best it's ever been
I wouldn't have missed it for the world
Wouldn't have missed lovin' you girl
You made my whole life worthwhile, with your smile
I wouldn't trade one memory
'Cause you mean too much to me
Even though I lost you girl
I wouldn't have missed it for the world."

How appropriate is that? Good thing I wasn't there because it would have done me in for the day, I think! Somehow, he muddled his way through the remainder of that purchase, and our house was briefly filled with the color pink once again. We headed to the cemetery and released the balloons heavenward with a "Happy birthday, Hayley!" shout and headed out to lunch with Grammie and Grandpa at Hayley's favorite Mexican restaurant. Ok, maybe she never had a favorite, but it's the one where we have lots of happy memories of her. We made angel food cupcakes that afternoon and watched the memorial video – as usual with both smiles and tears. Thanks to Grandpa for upholding our platelet donation tradition as well. So, all in all, an ok day. Of course, I have no doubt the heavenly celebration was far better!

Once again, thanks for thinking of us – for your notes, e-mails, calls, thoughts and prayers. Everything else with the Thomsons is great, and I promise a full update soon.

Friday, February 2, 2007

Four years ago tomorrow, we were given the most incredible blessing - Hayley Elizabeth Thomson. As we celebrate her life on Saturday, we look forward to that not-so-distant day when we scoop her up again at heaven’s gates. Happy birthday, sweet angel. We love and miss you more than ever.

Friday, January 19, 2007 9:11 AM CST

Nothing but prayers for Jenny, Tre and family as they attempt to adjust to life in a world without their precious Catie - all while preparing to welcome a new child in a matter of days. There really are no words...only tears and lots of love for a little girl named Catie.

Monday, January 8, 2007 2:10 PM CST

Happy New Year, everyone!

Hopefully, the Thomsons will be off to a healthier start compared to how we finished 2006. Would you believe that Alan was in the emergency room with a bronchitis/asthma attack Christmas Eve and then I came down with the stomach bug Christmas Day? Yikes. Fortunately, Jacob managed to avoid it all and seemed to enjoy his first Christmas – at least as much as a 6 ½ month-old can. The highlight was his first lollipop – a gift topper from his great aunt. He was obsessed with it, and while he may never eat a vegetable again, his red, candy-covered face was priceless!

At seven months now, Jacob's trying his darndest to crawl, and while not quite there, he still manages to get into everything! I guess that's what boys are supposed to do, huh? He currently does the "inchworm" (gets on his tummy, pulls up his knees and then lunges forward onto his belly to move about an inch or two at a time) and otherwise dives to get whatever he's after without a care in the world. He’s also very much into shrieking when he's happy, which is humorous and ear piercing at the same time!

If you have a chance, check out the pics from Jacob's six month session, taken the first week of December. Although Jacob was a bit stoic and mesmerized by the camera, our talented, photographer friend Alisha managed to get some great shots. It was sort of "day in the life" if you will...we started with Jacob eating, then playing, then sleeping. Each day, we're amazed how much joy this little boy brings to our lives and are so grateful to have him with us.

Not much else to report. Please continue to pray for Catie (ga/catie) who is battling relapsed medulloblastoma with unwaivering charm and determination. Catie and her family were some of the first we met on the AFLAC floor, and they will always be close to our hearts. They're facing a rough patch right now – AND are expecting a little brother or sister for Catie at the end of the month. I'm sure all prayers and well wishes would be very much appreciated if you can stop by their site.

May 2007 hold many blessings for each of you!

Enjoying his Christmas lollipop


Biting his lip (the face that reminds me so much of Hayley!)



Happy with Dad

Tuesday, December 19, 2006 6:33 PM CST

Two years. It seems like yesterday and a lifetime ago – all at the same time.

First of all, thanks to all of you who remembered, who prayed for and thought of us today. I really anticipated that this would be the year everyone would "forget" and was dreading that extra feeling of aloneness. Thanks so much for proving me wrong.

We miss our sweet little girl more than words can say – but that is true every day. Today is just one of the two days a year we really let ourselves celebrate and miss her with our entire beings. I don't have any profound words, really. We survived the day ok, and followed the "traditions" of sorts we started last year. Of course, Jacob was determined to keep some of the attention on him, and did his usual “not napping well” on special occasion days (LOL!). We watched the memorial video in the morning –always a tear jerker. Hayley was just so vibrant and full of life, and when you look at her pictures, it's hard to figure out where everything went so wrong. I do know we're grateful for all those happy days. We hope someday we feel the contentment (or perhaps blissful ignorance that something really awful could happen) we saw in our faces in those pictures. It sounds strange, I guess, but even in the hospital, life was full. We had our daughter. Now, no matter how happy we are, there's always "that special someone" missing.

We took Jacob to the cemetery for the first time later in the morning, and we released three balloons heavenward. It was a beautiful day in Atlanta (70s!), and he was content to sit by Hayley's marker and play happily. Then, when Alan decided to introduce Jacob to the flock of 50 geese on the other side of the lawn, the fun began! The geese apparently interpreted his approach to mean "food" and promptly began their attack. So, we hightailed it out of there with a good laugh! Next was our shopping expedition for the kids, lunch at the Loop and delivery of presents to Scottish Rite’s AFLAC unit. We took Jacob up to visit Hayley's sweet nurses and techs (yes, I actually made it onto the floor), and tons of our favorite people were there. Unfortunately, being naptime and surrounded by a crowd wasn't a good combo for Jacob, and he quickly turned into a wailing baby. So, we hightailed it out of there too! I guess the good news is that I was so distracted by Jacob, I didn't have time to be sad or feel weird about being on the floor – it was just great to see everyone. Then, we were homeward bound. Dinner with Grammie & Grandpa wrapped up our day, complete with a toast to Hayley and her amazing legacy. We love you, sweet girl!

It's hard to believe Christmas is literally right around the corner. We've done a decent job of getting in the spirit...the tree is up, the stockings are hung (including Hayley's), and we're almost done shopping. We remain ever thankful during this season for the gift of God’s son – our assurance that we will one day see Hayley again. May each of you have a joyous Christmas and wonderful holiday season, and thank you, thank you for your tireless support.

Thursday, November 30, 2006 4:04 PM CST

Thought you might enjoy these pictures of Jacob over Thanksgiving. We went to visit Alan's Mom (and some family friends) in Carolina Beach, NC and really had a great time. Not only did we see two rainbows on Thanksgiving day (thanks, Hayley!), but Jacob got to "meet" the ocean. It was a big moment for us because one of Alan’s greatest wishes was to take Hayley to the beach. We had plans to go at the conclusion of her initial treatment, but then the relapses and non-stop hospital stays began. Given her immense fascination with water, we know she would have loved it. So, to take Jacob was definitely bittersweet, but boy, did he think it was great fun!

My Two Favorite Guys


With Nana!


All three!


Flying high



Laughing at the Waves...


----------
Monday, November 20, 2006
I can't believe Thanksgiving is almost here. I guess it's no surprise what I'm most thankful for this year! I know it sounds crazy, but I do feel abundantly blessed - for what God has give me, for what He's taken away, and for the love that remains. And I am so extra thankful that Alan and I have Jacob to celebrate with this year. We also get to see Nana for the holiday, which is an extra special treat!

Speaking of our little man, Jacob is nearly 6 months old and is doing great. He's such a smiley little guy, and we can't wait to see his big grin each morning. We started on baby food a few weeks ago, and he's happily gobbling up his veggies. I about fell over when he ate half a jar of peas on the first try! He loves to grab anything in reach - especially hair(!), and he's tried to insert our entire forearms into his mouth on numerous occasions.

There are three pictures of Hayley on the table in our entry hall, and whenever Jacob is getting grumpy, we sit him in front of the mirror at the table and he instantly perks up. He grabs for the pictures of his sister and just smiles and talks to her. The first time he did it, I couldn't stop the tears, but now I find it incredibly (bitter)sweet and it always brings a big smile to my face.

With Thanksgiving almost upon us, December will be here before we know it. Of course, we are dreading the 19th, but we must be making some semblance of progress because we are planning to stay home for the holidays for the first time in three years. The last time we were home for Christmas, Hayley was 10 months old. I'm sure it will be an interesting month and very difficult at times, but made bearable by Jacob's sweet presence.

As we miss Hayley this Thanksgiving, Alan's family will also be missing Alan's father, who I never had the pleasure of meeting. November 25 will be the 10-year anniversary of Alan's father's (Marlow Thomson, from whom Jacob gets his middle name) tragic death, and I can only imagine the emotions such a milestone might bring. Unbeknownst to me, Alan's mom asked Alan to write a short piece for the local paper in his memory and Alan showed it to me yesterday. I thought you might like to see what he wrote:

Memoriam
MARLOW THOMSON
NOVEMBER 25, 1996

Dad, It has been 10 years since you completed your mission here with our family and departed for a better world. In one moment, remembering the last time we saw each other over dinner with my college friends and favorite college professor, it seems the time has passed so quickly. In an adjacent moment, contemplating all that has come to pass in these ten years, it seems like an eternity since we have been together to support, joke, and love each other.

Mom relayed one of your comments to me about how you were looking forward to having grandchildren. At the time I wasn’t even close to being married, and I thought it a bit funny; but now I find so much comfort in knowing that precious little Hayley Elizabeth had an enthusiastic Granddaddy awaiting her arrival in Heaven. I think of you two playing together often.

Mom and I, and everyone, miss you, Dad. In fact, I seem to miss you now more than ever…it is funny how that works. You are with us every day. I hope I make you proud every now and again. I hope I make you smile a lot. You taught me all I know about being a husband and a Dad. We love you. Measured by your time, we will see you soon.

-------------------
It's true...one of the very last things Marlow said to Alan's Mom was how much he wanted to have grandchildren. And that was four months before Alan and I started dating. There was something strangely sweet about knowing he'd said that after Hayley left us. Of course, we've many times since then "told" Marlow that he's going to have to wait a VERY LONG time to meet the rest of his grandkids.

Well, this has gotten pretty long, so here's wishing each of you a very happy Thanksgiving. We hope you'll cherish your family like never before this holiday season and remember all of your many blessings. We count all of you who have supported us so faithfully among ours.

PS – A few pics of Jacob below. He’s slowly but surely getting more hair!

November 1, 2006

There's a new sheriff in town!


Jacob was a very serious cowboy...


...until we took his hat off!


Hope you all had a great Halloween!
_____________________
October 16, 2006

*** Please send prayers to Catie (ga/catie) who will be having a fourth brain surgery on Monday, October 16th to remove what hopefully is NOT recurring tumor. Our thoughts and prayers are with you, sweetie!

September was a month full of firsts for the Thomsons...

On September 17th, Jacob was baptized during the Sunday church service. Miraculously, we held it together pretty well through the actual ceremony, and Jacob was simply content to take it all in. It was the hour prior to the service that set the tears flowing. As we met with the other families, it quickly became apparent there would be several little boys baptized that day. The heart breaker? Each of them had their big sister(s) there, wearing their beautiful dresses and celebrating the newest addition to their families. Their families were complete. Ours was not. Fortunately, I recovered, recognized that Hayley was there in her own way, and we had a great day celebrating.

The next weekend (drumroll, please), Alan and I actually enjoyed a weekend away in Amelia Island, Florida. It was a work trip for him (and thus free) or I never would have dreamed of leaving. I must confess the sun and sleep were wonderful, and Jacob did great with Grammie & Grandpa. He was only slightly more spoiled by the time we returned (wink!).

At his four-month appointment, we found Jacob was up to nearly 16 pounds. Obviously, recurring reflux issues aren’t keeping the pounds away! In general he is doing great. His hands almost never leave his mouth now, and he loves for us to find new ways to make him laugh. His hair is starting to grow back, and Grandpa, who shared identical hairlines with Jacob for a while there, confesses he is jealous! It's funny, as much as Jacob and Hayley looked alike as newborns, they don't share quite the same resemblance now. Jacob's long face and big eyes make him adorable all in his own way.

With October here in full force, there is definitely an extra ache in my heart. By month-end, Hayley will have been apart from us - enjoying Heaven's wonders - longer than she was here with us. It saddens me deeply, and it's also just hard to believe that it's possible. She was and is such a central part of our lives. At times, it seems like just yesterday that we were playing play doh and feeding her dogs. Of course, I see her friends getting so big and I know exactly how much time has transpired. Twenty-two months is far too short a time to hold someone in your arms...but clearly not too short to make a world of impact. She certainly taught us that, didn't she?

Some of you may have caught Senator John Edwards' wife, Elizabeth, on Oprah a week or two ago. I am so glad that I flipped the TV on that day. Many are familiar with her battle with breast cancer immediately following the 2004 presidential race. What I didn't know until her appearance was that she lost her first-born son, Wade, 10 years ago. Her eloquence and evident love for him moved me to tears – so much so that I recently bought her book. In it, she talks about the physical and virtual communities that rallied around her after her son's death; the communities that helped sustain her in the years that followed. She talks about strangers she'd never met that mourned and remembered with her. It immediately brought all of you to mind. You have been our community. I can only once again say thank you for remembering, for caring, and for loving both our children.

A few pics from this week...

Wednesday, September 13, 2006 5:51 PM CDT

If you're headed out to eat on Monday, Sept. 25, make Chilis your destination. Monday is their annual "donate all profits to St. Jude's day!" Good food for a great cause!
------

Boy, a month flies by, doesn't it?

Jacob is now a big three and 1/2 month old, smiling and laughing and just generally being cute. If you look at the pictures below in progressive order, you can probably tell he's on his way to being a baldy soon – we'll see how much hair sticks around. Goodness knows, we know how snuggly and kissable a hairless head is!

Happily, he's been sleeping through the night (albeit with a few pacifier runs) for several weeks now. If we could only conquer naps, we'd be in good shape. You can tell he is going to be a handful – never wants to miss a thing!

Jacob's been battling his first cold this past week - our first experience with him getting sick. I thought I was going to be able to come here and pronounce how well I'd been handling it all. And it's true - I have been – until today when I heard him cough and cough and cough and had a total meltdown. My rational self knows he is just fine, but I guess lingering illnesses will always mess with my head – even ones as minor as a cold. Thankfully, no fevers or extended sleeping have been involved to heighten my paranoia, and he's his normal cheerful self. (For those of you unfamiliar with Hayley’s story, her diagnosis began with a series of never-ending “normal” illnesses – colds, ear infections, respiratory issues, etc.) Your prayers for Jacob's speedy recovery and Mom's sanity are appreciated!

In other exciting news, Alan was asked to join (and gladly accepted) the board of Cure Childhood Cancer, the long-standing Atlanta charity dedicated to funding childhood cancer research and providing family services. I also think he might be the Red Cross' number one platelet donor for the year (well, maybe not quite – but close!). I know Hayley would be so proud of him for his efforts in the fight – and I am too! Not much is new with me. Somehow between Jacob, the house, a little tennis and the occasional freelance writing assignment, I am running non-stop from morning 'til night.

Amidst all the chaos, Hayley is always in our thoughts, and you never know when a fresh reminder of our little girl will turn up around the house. Just the other week, Alan unearthed her favorite bottle of pink toe nail polish. She had never had her "nails" done until she was at transplant, but she learned to show those toes off in a hurry!

Last, but not least, a special thank you to everyone participating in Light the Night in Hayley's memory. We are honored that you continue to find ways to remember our sweet girl.


Jacob's favorite pastime - admiring himself in the mirror!


Finding my tongue


My grandpa is SO funny


Smiling for Mom

Sunday, August 6, 2006

It seems I'm always apologizing for the delay in updates. We're all doing well - just trying to keep up with life with a little one! Jacob is doing great – up to 12 pounds and smiling now, which is such a treat! He's still not sleeping for more than five or six hours at a stretch, but we're hoping any night might be the "magic" one.

I started Weight Watchers a few weeks ago to shed the last of the baby weight (so far, so good), I'm trying to remember how to play tennis again, and Jacob and I managed to survive a week without Alan, who was away on a business trip! Somehow, those trips always get scheduled during the newborn phase (wink!). Otherwise, we've just been relaxing and enjoying our little guy.

With school starting and Jacob making it far more bearable for us to attend family-centered events, we find ourselves trying to imagine Hayley as a 3 ½-year-old frequently. Sometimes it's easy to imagine what she'd be into by now; at other times, nearly impossible. The reality of missing her for a lifetime overwhelms me. There will always be new milestones her friends are reaching – from riding bikes to starting kindergarten, from trips to Disney to ballet class, from dating to graduations. While we’ll always be happy for her friends, there is a pang at each milestone/event that cuts to the core. Oh how we miss our sweet girl...

Fortunately, we have this precious face to brighten our days:






Speaking of...Jacob's "calling" now so I better run. Thanks so much for checking on us!

PS – I'm happy to report all of our friends' new babies arrived safely!

Saturday, July 8, 2006 12:56 AM CDT

*If you haven't already, be sure and check out Jacob's newborn slideshow above. All photos are from when he was 13 days old – scrunchy, wrinkly and adorable! Be warned – there are a lot of pics. We couldn't bear to cut!

As usual, sorry it's taken so long for an update. It seems I am busy all day running between feedings and laundry, but Jacob's doing great. Here's a recent picture of our little patriot! He couldn't have been easier to take out for the 4th – slept right through all the fireworks!



Our babies may start out little, but apparently they don't stay that way long! Jacob was already over 9 lbs at his one month appointment, and is growing like a weed. He may well be a roly poly like his big sis. He is changing so fast...hopefully smiles aren't too far off! He tries to stay awake A LOT now, which is fun and exhausting at the same time - my days of napping appear to be numbered. His baby acne is finally starting to clear up so be on the lookout for lots of pics soon!

Two dear friends (each also lost her only child – one to cancer and one to a metabolic disease) are preparing to deliver their second children in the next few weeks. I am so excited for them to meet their babies and experience this bit of joy in their lives again. Though nothing will take away the pain of losing their firstborn, we are continually amazed by how much we love our little guy – and know they will feel the same. Natalie and Robin, our thoughts are with you!

There are so many activities and ways to help in the fight against cancer right now. As soon as I can gather them all in one place, I will attempt to post all the amazing things that are happening. In the meantime, I encourage everyone to give blood or platelets if you can. As is often the case in Georgia, there is currently a critically low supply of platelets and blood. You might remember Hayley received more than 60 transfusions during her 10 months of treatment – and we thank God for each and every donor that gave us extra time with her. You can donate by calling the number above.

Hope you're all having a great summer and thanks so much for checking on us!

Saturday, June 17, 2006 10:00 AM CDT

It's hard to imagine Jacob not being here. It's only been 2 ½ weeks, but seems so much longer – we love him dearly already. I feel like his little life is flying by so quickly. The physicial similarities between Jacob and Hayley continue to appear and to freak me out a bit. He currently has a case of baby acne (just like she did) and is "chunking up" at a good rate – up to 7 lbs now. Sometimes I am overwhelmed by the similarities and fear consumes me that their lives will follow the same course. Alan reminds me on a regular basis that Jacob "does not and will not have cancer." It will always be my biggest fear. The thought of losing another child...I know I couldn't survive it twice.

In general, I find that I'm able to experience far more happiness than I anticipated. Yes, I tear up several times a day missing Hayley and wishing all four of us were here together, and I truly cringe at references to the "three of us." (I'm not sure that will ever get easier). But considering I thought I'd be a non-stop wreck, I'm doing pretty good. Jacob truly has brought so much joy to our lives. Just physically being parents again is an amazing feeling and I find that we try to soak in every moment with him – thanks to Hayley, no doubt. He is still sleeping most of the days away, but surprises us every once in a while with an hour or two of playtime – always great fun!

A big happy Father's Day to Alan this weekend. If I were able to start from scratch, I could never craft a better Dad for my children – to have seen him with Hayley, to see him with Jacob – you know he's got "it" in an instant. I know it will still be a bittersweet day for him without his daughter here…I hope he knows how proud she would be of him.

I can't go without sending special thanks to Alisha at AGR Photography (agrgallery.com) for donating her time and talent to capture Jacob’s newborn photos last weekend. What a gift for our family! We feel blessed to have met such a talented and caring photographer who captured our ENTIRE family with great love. I've posted a sneak peek of two of the images below. Enjoy!

Think Jacob's pointer finger is trying to tell us something?



And my favorite...

Friday, June 2, 2006

*June 4 - Pics below!

Friends –
I have searched and searched, but there really aren't any adequate words to describe Jacob's arrival on Monday. How do you describe what it feels like to have part of your heart and soul return? To hold one of your children in your arms for the first time in what has seemed an eternity? To be overwhelmed with a love you weren't sure was possible? Though a piece of our hearts is forever with Hayley, there is no doubt that Jacob is already loved beyond measure.

And how fitting and perfect that on the day we celebrate heroes and soldiers, our own little fighter chose to send her brother down to us. Hayley's presence was certainly felt throughout Jacob's arrival. The c-section went smoothly, and though my doctor didn't end up handling the c-section (given its unplanned timing), we were blessed with a wonderful, compassionate team who knew exactly how special Jacob was to us. Hearing him cry for the first time took my breath away...he was finally really here with us.

I was able to hold and feed Jacob in the recovery room (what a moment!) and it was quickly apparent that as newborns, Jacob and Hayley are/were virtual twins. True, he is a pound and ½ bigger than Hayley was, but they share many of the same features – including the exact same nose and mouth. Beyond the resemblance, the very next thing I noticed was the "kiss mark" from his big sister – the tiniest stork bite right on his nose. (I had commented to Alan several months ago that I'd be looking for her to have left her mark – and I didn’t have to look far!)

His arrival wasn't without a few stressful moments…when feeding him a bottle in the recovery room, he was so busy swallowing he forgot to breathe and turned purple! (He’s put the two actions together now, much to our relief!). Low blood sugar earned him a short trip to the transition nursery for observation, but he was back with us by early afternoon. Ironically, one of Hayley's former oncology nurses was working in the Northside nursery that day – so Jacob received some extra TLC during our short separation and the personal connection quickly put our minds at ease.

Besides being cute enough to eat(!), Jacob’s disposition couldn't be much sweeter. He is rarely fussy and is an eating and sleeping machine. He loves to stretch out his legs and squirm around when awake, making the cutest little expressions along the way. We thought he might roll over at three days old – he seems to have a fondness for rolling over to his side to sleep already. He is also quite noisy – seems he has a sound for every expression!

We came home Thursday evening, and are slowly settling in at home and finishing all the "last minute" preparations. Bear with us as we slowly attempt to post some photos over the next few days (c-sections and stairs aren't the ideal combination – but we'll get it done!)

I can't go without saying thank you – for your thoughts, your prayers, and your encouragement over the last few years and in the months that lay ahead. I am overwhelmed with the love I feel simply reading the guestbook. I know we have many stressful "firsts" with Jacob ahead of us, and ask for your continued prayers as we journey down this ever winding road. Our promise to Jacob from before his birth has simply been that we will always love him like there is no tomorrow. It is a lesson of living in the moment and not taking anything for granted that his sister taught us well. And yet, we know you join with us in hoping and believing that his tomorrows will be too numerous to count.

With hearts full of love for both our children,
Dayna & Alan

"Though He brings grief, He will show compassion, so great is His unfailing love." – Lamentations 3:32


With Mom at hospital


Looking at Mom


Ready to go home!


Stretching in my sleep!


I know how to get comfy!


Wide eyed


Snoozing...


With Daddy

Monday, May 29, 2006 5:17 PM CDT

Hello Friends!

This is Dad reporting in...Mom is a bit preoccupied:-).

What wonderful and memorable Memorial Day news we have to share. It seems that Jacob wished to keep the tradition established by his big sister!

Dayna went into labor at 1:30 a.m. By 2:30 her water had broken and we were on the way to the hospital for a planned – yet spontaneous! – C-section delivery. At 5:58 a.m. JACOB MARLOW THOMSON was delivered from heaven above weighing 6lbs 3 ounces, measuring 18.5 inches tall.

Jacob joined us about 2 ½ weeks earlier than we thought he might, but he and Mom are both doing well.

Thank you all for keeping us on your hearts over the past year. We are so glad to be able to share the attached photo with you. From his full head of hair to little toes and fingers, many of you will notice that indeed Jacob shares many features with Hayley. What a precious gift he is.



MORE PHOTOS AND AN UPDATE FROM MOM TO FOLLOW UPON HOMECOMING!


In thanksgiving and adoration,

Alan

Tuesday, May 23, 2006 6:15 PM CDT

Three weeks to go...we are officially in countdown mode now. I guess Jacob's decided to hang around in my belly at least a little longer than his Big Sis because at 35 weeks, this is the longest I've ever been pregnant! Physically, I am feeling good, but BIG. Emotionally, it's a rollercoaster. In just a few weeks we will hold a child of ours in our arms again – for the first time in 18 months. It feels like it's been an outright eternity. The thought of meeting and holding Jacob is joyous, terrifying, wonderful and mostly overwhelming. I can hardly wait to see what characteristics he shares with his sister and which are all his own, to hold him and smother him with affection. I imagine he truly will be the perfect embodiment of love, loss and hope – all at the same time. Since I can't even think about his arrival without crying, I can only imagine the emotions of the actual day.

Thanks to many of you for the Mother’s Day messages – if you didn't get to read the "Dear Mr. Hallmark" poem in the guestbook, it's so fitting. I imagine Mother's Day will always be a strange day – after all, it tends to be one where you want to gather all your children in your arms and marvel at how they've grown and how much joy they bring to your life. The awful fact is that's just something I'll never be able to do again. But having Jacob to look forward to definitely made the day far more bearable than last year – no doubt about it. And I am thrilled that Jacob should arrive just in time for Father's Day – guess I'm off the hook for a present, huh?

On the home front, everything is ready to go. Jacob's room is cutest in person, of course, but for you out-of-towners, here are some pictures. Now all we need is his cuddly little self!













Many thanks for your thoughts and prayers as the big day approaches. Of course, 1,000 "what if" scenarios run through our minds...but we're trusting and believing for the very best.

Monday, April 24, 2006 5:21 PM CDT

Friends –
Only seven weeks to go (at most) and sweet Jacob will be here with us! I can hardly believe it. I find myself more emotional than ever at the thought of his birth. How breathtakingly wonderful it will be, and yet I find myself wondering constantly how much more his presence will make me miss Hayley. All the emotions are sure to be overwhelming, but how we can’t wait to experience them – whatever they may be.

Easter was low-key, but nice. I suppose I will forever feel an unusual bond to the Easter holiday – as it is my assurance that I will one day see my sweet Hayley again. We attended church Saturday evening to avoid some of the gazillions of little girls in their Easter dresses and I managed to keep it together pretty well. The service had a theme of "shadows proving the sunshine." Of course, the reference was to Christ's death on his cross and the resurrection, but I couldn't help but think of Hayley. Isn't the reason we miss her so because she brought us so much joy? Indeed, the shadows do prove the sunshine.

Ironically, the day before Easter, Alan and I accomplished the dreaded task of packing up Hayley's clothes and finishing room preparations for Jacob. One of the many things we packed was the Easter dress I had purchased when she was in transplant that she was never able to wear. Ouch. The whole process was definitely hard, but at some point, I went into crazy nesting mode and just barreled through it. I will say that her shoes proved to be a meltdown point for both of us...there is just something so sweet and wonderful about children's shoes – and the idea of the little feet that are in them. The ones covered in playdoh were particularly heartwrenching...but wonderful proof that she was indeed here with us.

Many boxes to save and bags to give away later, we were done. My goodness, that girl had a lot of clothes! We set aside several special things (including the playdoh shoes) to keep in a hope chest so all is not packed away. I know her siblings will one day enjoy looking through it and hearing stories about their big sis! A special thanks to Mindi for the idea.

Otherwise, we've pretty much just been busy with life. Jacob was "showered" with gifts for the first time this past weekend, and I have to say he is well on his way to a great wardrobe himself. Believe it or not, I managed not to cry at the shower! Many thanks to everyone who organized the big day and spoiled us rotten.

My other big task has been working on Hayley's scrapbook albums. It is going to take a near-miracle for me to finish by the time Jacob is born, but hopefully I can at least come close to finishing. Ironically, her first year of life is captured all in one album. The last 10 months will comprise THREE!

Well, at last, here is the pregnant belly picture. It is getting quite large – perhaps I will get my 8 pounder after all!!! The picture is next to Hayley's artwork hanging in Jacob's room.



As always, thanks for checking in on us and keeping us in your prayers!
Dayna & Alan

Wednesday, March 29, 2006 6:01 PM CST

Only 11 weeks to go now...I can hardly believe it. My main focus is keeping Jacob snuggled comfortably inside until at least 36 weeks (Hayley arrived at 34). We've always said those six weeks were our gift of extra time (and I believe it), but it doesn't keep me from worrying it might happen again. Should he stick to the "schedule," he will arrive via c-section on June 15th, but we'll be ready from May on. God willing, I am delighted that Alan won't have to go through another Father's Day without a baby on earth.

Jacob's room is now painted and is getting a little more finished each day. I think I cried so much in anticipation of the painting that the actual event wasn't so bad. (Of course it was Alan who had to do it!) I still haven't managed to pack up Hayley's clothes, but I have promised myself to get to it in April. In the meantime, I have to admit it is fun to see the room take shape. Who knew boy stuff could be so cute?

We still miss Hayley like crazy. It about kills me to see big sisters with their little brothers. There is a Disney commercial airing frequently right now – with the big sister and her brother bouncing on the bed in excitement. Tears every time. That is what our family should look like.

But we are definitely thrilled to have this joyful event to look forward to. The conversation around our house goes something like this: "Won't it be great when we’re getting up three times a night again? Won't it be great to have no time to ourselves anymore? Won't it be great to be changing diapers?" And we're completely serious!

As always, we appreciate your prayers for Jacob's safe arrival (and our sanity in the meantime.)
With love,
Dayna & Alan
PS – I promise to post a "large belly" pic soon!

Monday, February 27, 2006

Sorry for the delay in updates - we have been busy with the whirlwind of preparations for little Jacob's arrival these past few weeks. He is doing great and is taking up more and more real estate in my belly. He is definitely an active little guy – and the cats have good reason to be worried!

We made a huge step in picking out bedding for his nursery – which I am starting to get really excited about. It's not easy to describe, but it has bright primary colors (blue, red, green) and more importantly, two of Hayley's favorite things – circles and dogs. We knew it was the right one the second we saw it. I already have visions of Jacob asking why we don't have a dog, but we'll deal with that when we get there! I imagine we'll tackle the packing away of Hayley's clothes and nick knacks, along with painting the nursery sometime in the next two-three weeks. So say an extra prayer for that. Though I'm not planning to give anything away in hopes of one day using it again, there is still something final about boxing it all away. I'm totally dreading it, though at least now I'm anxious to see the final results.

I'm feeling good – no complaints. Now that my belly is quite a bit more visible, I'm frequently asked the difficult question, "Is this your first?" Actually, that one's easy to answer. "No, it’s not." It's the follow-up questions that kill you. Oh, do you have a boy/girl and how old is she/he? (Depending on the person, my response varies from the simple, "girl; she's three" to "girl, she would be three," and waiting to see if they notice the "would," to "girl, she would be three" and launching into the whole tale). It can get exhausting. But I'm always sure to wrap up with the comment that it all makes this little guy in my belly extra special – which is so true.

On another note, this past Saturday was the two-year anniversary of Hayley's diagnosis. Perhaps surprisingly, this is actually one of the easier anniversary dates for us (although certainly strange and sad). I imagine it would hold far more significance if Hayley were still here with us. I think it will also be harder when Jacob arrives – because it's the type of day I will forever fear with him.

There are so many other things to mention, but I'll try to wrap this one up with some information for any of the other pregnant women out there. As many of you know who've followed this site for some time, IF Hayley's transplant had worked, we would have owed her life, at least in part, to the generosity of a cord blood donor. I will never forget the day we found out Hayley had bone marrow matches out there – and our special excitement that she had cord blood matches. (Cord blood donations involve much less red tape and coordination and can speed the journey to transplant – which in our case, was pretty critical.) So, if you're pregnant and are not planning to bank your baby's cord blood, this is a wonderful alternative to having them toss these precious cells in the trash. I recently uncovered this often hard to find information on donating:

If your hospital doesn't have a direct link to a cord blood donation center (if you're in Georgia, none do), there is one bank that accepts donations from anywhere in the continental United States: Cryobanks International, www.cryo-intl.com. You 1) call and register with them anywhere between 28-35 weeks of pregnancy, 2) complete a health screen and get a signature from your doctor, 3) they review your health screening and then (assuming you pass) they send you the collection kit. You deliver your baby, and the doctor collects just like you would if you were storing. Then, after you deliver, you call Cryobanks and they send Fed-Ex to come pick up the donation. It is totally free unless your doctor charges a collection fee, which most don't. Hopefully, this is helpful to someone out there.

As always, thanks for all your wonderful prayers and well wishes and for continuing to check on us. You are so appreciated!

Wednesday, February 8, 2006 1:33 PM CST

"Snips and snails and puppy dog tails..."

If that's really what little boys are made of, could we ever have doubted what Hayley would pick (at least for the puppy dog part)? Yep, you read that right, we were blessed to "meet" our wonderfully healthy little BOY this morning. Thank you, thank you, Lord for that answer to prayer.

Jacob Marlow Thomson is scheduled to join us in mid-June. (Marlow is after Alan's father). From all initial accounts, he will be a force to be reckoned with. The ultrasound tech had a time of it chasing him all around, but he's just perfect and now we really can't wait to meet him. The whole family is thrilled – and I know my parents, who never had a little boy themselves, can hardly stand it.

I'll admit I'm a bit of an emotional jumble. Am I excited? YES. I think the change will ultimately be very good for us – something totally new and different. Shocker – I've already been out looking at little boy stuff! Am I fearful of never having a little girl again? Yes. And I know there are many hard days ahead. Redoing Hayley's "girly" room and packing up her clothes will be like losing her all over again. I'm dreading it.

But we'll get to all that in good time. For now, we're trying to focus on the moment and not five years (or even five weeks) down the road. We are basking in the glow of healthy little Jacob and thank each of you for your prayers. He is surely one loved little baby. Can you even stand the wait til June?!?!!?

Sunday, January 29, 2006 5:59 PM CST

10 days until the big ultrasound. We're so very excited to know whether Hayley will have a little brother or sister this June and can hardly stand the wait until February 8. I promise to post that night and let you know. In the meantime, against my better judgement, I've posted a pregnant pic below. The baby is actively moving now (the best part of pregnancy!) and even Alan has felt a few swift kicks.



Unfortunately, before the big day, we again must survive another milestone without Hayley – what would have been her third birthday. I'll admit to being in a bit of a general funk over her birthday. I can't even believe that she would be three. And I still can't believe she's not here. Some days, the insanity of all we’ve been through really hits home.

We don't have major plans for the day, although Alan is signed up to donate platelets – always a critical need for cancer patients. And I imagine a few pink balloons will find their way heavenward...

Driving home the other night, we were flipping through the channels and came across a Josh Groban song, which I've posted below. It's truly beautiful and echoes many of our own thoughts as her sweet birthday approaches. It's far more impactful if you hear it, but wanted to share it anyway.

Thanks, as always, for your prayers and for all the warm wishes for Hayley's brother or sister. They are appreciated more than you know.

Dayna & Alan

To Where You Are – Josh Groban

Who can say for certain...maybe you're still here.
I feel you all around me; your memory's so clear.

Deep in the stillness, I can hear you speak.
You're still an inspiration.

Can it be that you are my forever love
And you are watching over me from up above?

Fly me up to where you are beyond the distant star.
I wish upon tonight to see you smile...
If only for awhile to know you're there.
A breath away's not far to where you are.

Are you gently sleeping here inside my dream?
And isn't faith believing all power can't be seen?

As my heart holds you just one beat away,
I cherish all you gave me everyday.
'Cause you are my forever love,
Watching me from up above.

And I believe...
...That angels breathe
...And that love will live on and never leave.

Fly me up to where you are beyond the distant star.
I wish upon tonight to see you smile...
If only for awhile to know you're there.
A breath away's not far to where you are.

I know you're there.
A breath away's not far to where you are.

Wednesday, January 4, 2006

I've never been much of a New Year's fan, but I must confess I was excited to welcome 2006 with open arms. I pray 2005 is the worst year of my life – ever.

After surviving the 19th, we escaped for Christmas...it's becoming a trend, I know. We spent several days in warm, sunny Bahamas with my parents and enjoyed the change of scenery immensely. Of course, we thought of Hayley at every turn (she would have had a blast in all the pools), but it's amazing how the warm sun and ocean air can make life seem just a little more bearable...at least temporarily.

Returning home was considerably more difficult, but it always is. It's quite interesting being a pregnant, grieving mom. You're pretty much a ball of emotions all the time, and you never quite know when it's going to come out. I can talk pleasantly with a friend on the phone, then get off and cry my heart out. And, of course, the mere thought of the birth of this baby reduces me to sobs...happy tears and sad tears combined. I can't even comprehend what the actual day will be like. If this baby's anything like Hayley, I imagine their arrival won't be anything I expect, or better, when I expect!

Baby Thomson is growing rapidly...or at least my belly is. I'm now 15 weeks along and feeling great. We were surprised with a 12-week ultrasound in mid-December and were amazed to see the progress in just a month. It truly is such a miracle. We were greeted with a smile (or what appeared to be, anyway!), a wave and lots of kicking and squirming. Should I get surprised again, there's a possibility we'll know if we're expecting a boy or girl late next week, but chances are we'll have to hold out until early February. I know that no matter the result, this baby was hand-picked by Hayley and God and will be just the right addition for our family. How we can't wait to meet him or her!

As always, thanks for all your prayers and warm wishes. It amazes me that this site is nearly at a million hits. Of course, it's easy to know why you followed our journey when Hayley was here – who wouldn't fall in love? What amazes me is the steadfastness and, honestly, courage, of those of you who continue to visit. It means the world to us to know you all care not just for an adorable toddler, but for her struggling parents too. For that, we thank you.

May many blessings be yours in 2006,
Dayna & Alan

Monday, December 19, 2005

Thanks to each of you for the warm thoughts, prayers e-mails, cards and gifts this weekend, today and always. What a blessing to know you care and remember our baby girl with us.

One year ago today, at a little before 7 p.m., our sweet Hayley smiled three times...and took her last breath on this earth. When I close my eyes, I can still feel the warmth of the fire that night, the weight of her in my arms...Oh to hold her again…

The day was hard, as expected, and we're boasting red, puffy eyes. This day will always represent such a deep loss for us; and yet, such an amazing homecoming for Hayley. Can't you almost hear the angels singing?

For the day itself, I think we started a bit of a tradition – we can't wait until all of Hayley's siblings can join us in remembering and celebrating. Before even getting out of bed, we watched Hayley's memorial video, smiled and laughed and cried as we watched her "grow up." Of course, it didn't take nearly long enough, but God sure got her at a cute age, didn't He? We headed to the cemetery with balloons in tow, and after some alone time, together released the balloons and a bunch of kisses heavenward. (As my neighbor's girls like to say, we watched until "she got 'em!"). We headed down to lunch at the Loop, our favorite pizza/burger joint from our inpatient days at Scottish Rite. I think we might be looking at a 10 pound baby after that lunch, but it was worth it! From there, we headed to Target for a mini shopping spree. We bought a bunch of toys for the AFLAC playroom and patients...all things Hayley would like! It was actually a lot of fun picking everything out – from shopping carts to play doh to dogs and my little ponies to doodle pads, stickers and more. Alan delivered the gifts (I wasn't brave enough to head up there today of all days and waited in the car), but he was able to see a few of our dear AFLAC friends – always true heroes in our eyes. The rest of the day has been quiet at home, watching videos intermittently, reading your kind notes, remembering our precious daughter.

They say the first year is the hardest...and though we know the pain will never go away, we pray it's true. I will never fully comprehend how any parent is able to survive the loss of a child...it amazes me each day that we're still standing. I know the grace of God must surely be sufficient – for we get up each day and struggle on. We are so grateful for this precious new life, which surely helps to make the coming days a bit brighter...

I've re-posted the bulk of Alan's eulogy from Hayley's service below for any of you who may want to read it, as it is especially close to our hearts today and captures Hayley so well.

Hayley, we love you. You will always be our first. My first pregnancy, our first baby, our first time to be the "Mama" and "Dada," our first understanding of unconditional love, our first experience of great joy. Thank you for the incredible journey. Today and this Christmas, may you dance with the angels and know you are loved...now and always.



Remembering Hayley – Read by Daddy December 22, 2004

Over the past few days, we've had a lot of time to reflect on wonderful memories of Hayley - her life, her personality, her impact, and the lessons she taught us all.

And, what better place to start than at the beginning?

We chose Hayley's name when Dayna was five months pregnant. We were so excited to know that we were having a little girl and we wasted no time settling on the name, Hayley. Often we were asked why we chose it, and we never had a very good answer. It wasn't a family name. It's not a bibilical name. It wasn't after the comet. We just liked it. Plain and simple. We used to joke at just HOW meaningless the name was, as the baby books told us that it meant, "field of hay" in Old English. But we liked the name and weren't deterred.

It was only halfway through Hayley's initial chemo treatments that we found out how appropriate her name really was. Dayna, the avid scrapbooker, purchased a "birthday keepsake" (I'm sure I rolled my eyes at this!), which included an etymology of Hayley's name. Imagine our surprise to learn the Norse etymology of Hayley - It derives from the word "Hero." Hero. Could there be a more appropriate name for Hayley after all she was enduring with a smile on her face? How perfect and true.

Hayley was unpredicatable from the moment of her birth. Dayna's due date was March 17th. Hayley decided to arrive February 3, a full six weeks early. The doctors warned us that she might have to spend several weeks in the hospital. Apparently, they were not familiar with the Norse Etymology of "Hayley", either. She arrived tiny, but she was perfect. She had the lungs of a full-term baby and was actually cleared to go home before Dayna. We often wondered why she arrived so early -- and now we know. Those extra six weeks were God’s gift to us - a gift of precious time with our daughter.

Hayley continued to do the unexpected by quickly rising from the 4 lbs 5 oz we brought her home at to the roly poly "95th percentile" little girl she was by her first birthday. Her rolls were plentiful and creases deep. She was the picture of health: a plump, chubby, completely loveable baby girl.

And as her body developed at the time of her diagnosis, so too was Hayley's personality beginning to emerge. From Day 1 of her battle with leukemia when she laid in her ICU bed through the 10 months of her fight, she not only survived, but she took on life with great enthusiasm and admirable courage.

We'll never forget how she sang "ei-ei-oh" on the way to her first surgery. How her curls framed her face. How the hospital scale became one of her all-time favorite toys - perfect for peekabo and dancing. How she could pick out a dog, horse or cat whether in books, in the neighborhood, or anywhere - faster than we could. She humbled us on a number of occasions when Mom and Dad incorrectly told her "there is no dog in that picture," only for us to later see precisely the dog that Hayley saw seconds earlier.

Circles - rather "Kirkles" - were her favorite shape, and she could point them out in the strangest of places. She loved to stomp her feet to "If you’re happy and you know it" and march in place. If she felt like playing, she'd plant a sticker on your shirt or ask you to hold her playdoh. Her emotions were never forced. If she wanted to blow a kiss, she blew a kiss, if she wanted to wave goodbye, she waved goodbye. She was genuine through and through.

We will miss the twinkle in her eyes and her gigantic grins, the way she bounced up and down and clapped her hands when Mommy or Daddy would walk into the room. We will miss her giggle. Her beautiful smile, her long eyelashes and oh, those cheeks. We will miss her saying "more, more, more," and "no" before questions were even out of our mouths, as well as every other magical, if mispronounced, word she spoke. We'll miss her asking for her dogs and chasing the cats. We'll miss the way she picked flowers and held them close to her perfect nose. We'll miss her diligence in taking our temperature and blood pressure, the true nurse in training. We'll miss her painting and coloring with us and the special way she poured tea. We'll miss the way she cleaned things with vigor - from the hospital floor to the IV pole to her stuffed animals. We will miss her sweet kisses.

Our hearts are broken, no doubt about it, but our sadness is not for her – Hayley is whole and healthy now. Her absence hurts so much because her presence brought us so much joy.

Friends and family have commented that though she wasn't named for it, Hayley's life is much like a comet that burns hot and radiantly, but flashes through the night-time sky much too quickly. And much like a comet, Hayley has left a shimmering trail of light - her afterglow - that cannot be forgotten. Fingerprints that she has left on our hearts encourage all of us to love deeper and stronger and to keep our focus heavenward.

Many of you know, we have seen God's hand move throughout this journey. The people he placed in our path and the similarities of their stories were too close to be anything BUT from Him. The 80 bone marrow matches, Dayna meeting Jenna, the man I met in the flu shot line, the canceled MRI. Looking back, these events weren't signs that Hayley would be granted a miraculous healing on earth as we had hoped; however there is no question but that they were divine appointments set strategically to give us hope when we needed it most and to give us strength that would allow us to make it through the next turn.

Before Hayley got sick, I was the privileged one who would put her to bed every night. Our routine included me telling her that she could grow up to be anything she wanted. Over the past year, we've come up with many professions we've decided would be perfect based on her favorite activities - a nurse, a veterinarian, a gardener, an artist, a housekeeper...the list goes on.

Little did we know that she would grow up to be the thing we had called her since we first laid eyes upon her - a precious angel of heaven.

And so, to our angel and to God, we say thank you.

Thank you, God, for allowing us the privilege of being Hayley's parents, for blessing us with her presence for this dear, if short, time. We wouldn't trade it. Thank you, Hayley, for reminding us to keep our eyes focused on heaven and to spend our time on earth doing the things that really matter. Thank you for reminding the world that Jesus died so we could spend eternity together and that this isn't good-bye. We WILL see you again. For now, it is simply "see-ya-later alligator." And that assurance brings great comfort and peace to our broken hearts.

We will treasure our memories, Sweet Angel, until we meet again.

Wednesday, December 7, 2005

Mercifully, Thanksgiving was not nearly as hard as I anticipated...at least not the day itself. We were able to spend it somewhat untraditionally with Alan's extended family in North Carolina. His aunt and uncle rented a huge house in the Outer Banks and packed all the "adult" kids in. None of Hayley's grandparents were there, which was probably emotionally a good thing for all of us. Our whole stay was actually wonderfully distracting.

The drive home was another story. Too much time to think always does me in. Add some sentimental songs, and I was an emotional disaster. Why doesn't my little girl get to delight in Christmas with all the other kids this year? What was running though her little mind that last awful month? How will I do the same things with this baby that I did with Hayley and not be sad all the time? How will I ever look at a picture of the "new" three of us and not feel like it's all wrong? How am I ever going to stay sane the first time this baby gets sick? And on and on and on. I suppose I was overdue for a meltdown. Sometimes it all just hits in an overwhelming wave.

Perhaps surprisingly, one thing we don't worry about is loving the new baby – at least not anymore. I know we'll love this little one all the more because of Hayley. Heck, we're crazy in love with him or her already.

Speaking of, the baby's doing great. One more week and I'll be through the first trimester and hopefully nearly over these queasy, tired days. We've already seen the baby's heartbeat, but we should get to hear it at our next appointment...can’t wait. It truly is such a miracle.

We managed to decorate over the weekend for Christmas – we didn't go all out, but at least we don't look like scrooges. It was hard, but fun at the same time. We've always had an artificial tree, but decided to go real this year for a change. Of course, it was hard to chase away the thoughts that Hayley should have been there to help pick one out, but as I told Alan, if he and Hayley had gone Christmas tree shopping, they would have been more likely to come home with a dog than a tree! Trust me, they would have found a way. Anyway, we got the tree and it's up and decorated (phew!). I'll tell you Hayley amassed quite a collection of ornaments in her less than two years. The little girl nurse holding a dog about killed me, but it hangs in a prominent spot along with all the others – just as it should.

And so, the days tick on 'til the 19th. Thanks for all your thoughts and prayers.
Love,
Dayna & Alan

PS – Special prayers to Catie's family as they make treatment decisions for the remaining tumor and face scans again next week.

PSS – Looking for a great stocking stuffer? Check out www.musictolighttheworld.org. Stanton Lanier has composed beautiful piano music for years, and his CDs lulled Hayley to sleep every night. His newest cd, the Voice, includes a composition called "Peace," which was written the night Hayley entered her own eternal peace. For all orders placed with the word "Hayley" in the comments section, Stanton will donate 20 percent to childhood cancer research.

Sunday, November 20, 2005

One year ago, today, we were sent home from Eggleston – a mere 16 days after transplant. We were sent home with the warning that Hayley had less than a month to live. I can still remember the moment they told us that, the words ringing in my ears, the tears that fell on the hospital bed, the sobs that consumed me. And I remember Hayley running around like everything was normal – our amazement at her resilience and our determination to enjoy every second of whatever time was left. And I remember praying so earnestly that the doctors would be wrong. But they were right...

And as it turned out, Hayley would do most of her "living" in the next week – in the days approaching Thanksgiving and the holiday itself. By Sunday, we would be in the ICU, in the throes of horrible graft versus host pain and some of the most horrendous memories of my life.

So, Thanksgiving is a strange time. Mostly one with happy memories, really. Days filled with painting, chasing the cats, multiple visits to the nearby horse farms to visit the "neigh neighs," nights filled with cuddles and snuggles. It was a beautiful and bittersweet time if ever there was one: grateful for the time that was left; sad for the time that would never be.

I imagine that's much how this year will be – perhaps how every Thanksgiving will be. Grateful for the time we had; grieving for the time that will never be. How we miss our little girl.

We are so thankful this Thankgiving to have the hope and blessing of another child to look forward to. Thanks in part to a fainting spell two weeks ago, we've seen our little one multiple times now. He or she is doing terrific, and we can hardly stand the wait to June. And to answer a most frequent question, Yes! We will be finding out the sex of the baby – early February as best I can judge. Though life has taught us that you can't plan everything, we still try where we can!

What else do we have to be thankful for this Thanksgiving? Some would think not much, but there's actually quite a long list (I think I surprised myself even!). Here are my top few:

For friends and family, who have stood by us through a hellacious year – for those that have cried with us, for those who have worked double time to make us smile, for those that have distracted us, for those who have prayed from afar, for each of you who check on us and encourage us with your kind and caring words.

For a God who walks beside us in suffering, provides strength to endure the impossible and gives us the great promise of an eternal reunion

For our marriage, which continues to hold strong (with lots of love and respect) amidst the worst that life can hand out.

For every laugh, smile, giggle and precious moment we had with our daughter and for her memory, which continues to make the world a better place.

For the hope of a child's laughter to again brighten our home, our lives and our hearts.

We are so sad, but so thankful. May you truly know your blessings this Thanksgiving…more than any other.

With love,
Dayna & Alan

PS – Platelets are in especially critical need during the holidays. Please give if you can!

PPS – If you're looking for a great stocking stuffer, check out www.musictolighttheworld.org. Stanton Lanier has composed beautiful piano music for years, and his CDs lulled Hayley to sleep every night. His newest cd, the Voice, includes a composition called "Peace," which was written the night Hayley entered her own eternal peace. For all orders placed with the word "Hayley" in the comments section, Stanton will donate 20 percent to childhood cancer research.

Tuesday, November 15, 2005

We can't imagine the first CureSearch Hayley Thomson Challenge being any better than it was! I'm really not even quite sure where to begin so forgive me for rambling...

First off...the weather. For those of you out-of-town, it was forecasted to rain on the 14th for at least a week. Believe me, we were keeping careful track! Even the morning of, the weather stations were still calling for sprinkles, clouds and definite rain in the afternoon. Imagine our delight when setting up for registration, to see the sun burst through the clouds for a beautiful 73 degree day. And it only got better from there. Two of my wonderful volunteers called in a short while later to report a rainbow circling the sun. Thanks, Hayley!

Our "celebrity" guests blew me away with their kindness, generosity and heart for childhood cancer research. Tom Glavine played the 7th hole with each group, and I'm sure was exhausted by the end, but no one would never know it. His wife Chris, who is such an amazing ambassador for childhood cancer research in her own right, joined us for the latter half of golf and the reception. Imagine our surprise to learn it was their anniversary that day! How honored we are that you all would choose to share it with us, raising money for this cause. 790 the Zone's Chris Dimino joined us for the reception, to serve as our live auction emcee. I had never met him before, but was immediately touched by his warmth and kind spirit. He's definitely one of the people who "gets" why research is so important. What a kind and compassionate man. And an awesome emcee at that!

We were honored to have so many of our family and friends there with us – friends from all areas of life – and some wonderful companies that stepped up to sponsor a first year event. In particular, thanks go out to Georgia Pacific, Summit Supplies and Towersource – we couldn't have done it without you. And what a thrill to reunite with some of our "cancer" buds. We are forever bonded with you all and pray that event's like yesterday's pave even a small part of the way on the road to the cure.

The room (and golf course) were adorned with posters of different children's cancer stories – I hope they touched the attendees as much as they touched me and raised awareness of how many children are actually affected by this awful disease. We were amazed when one sponsor actually requested his hole sign so he could take the child's story back to the office and share it with others.

Of course, Alan brought many to tears with his speech, which was short but heart wrenching (at least for me). If I can piece together his notes (which he forgot!), I'll definitely try to recreate his speech and post it here. I know Hayley would have been incredibly proud of her Daddy!

Now, if I can get a drum roll...

We're still waiting on a few outstanding checks, but all told, we raised over $40,000 for CureSearch through the event! We couldn’t be more pleased with how everything turned out.

Special thanks to all of our amazing volunteers (especially Jesee, Kristin, Kati, Steve, and Lynda, who were with me ALL day), Chris and Tom Glavine, Chris Dimino, Angels in Atlanta, all of our sponsors, silent auction/service donors, AND everyone who attended, contributed, prayed for and thought of us yesterday. Thank you, thank you, thank you.

Hayley – We love you so much, sweetie!

Friday, October 28, 2005 9:07 AM CDT

Friends, I can’t hold out on you any longer...

Hayley's going to be a big sister!! Her little brother or sister is scheduled to arrive in late June 2006. We found out last week, ironically (or better, providentially) on the 19th. I could quite literally picture Hayley jumping up and down and clapping in heaven when we found out.

For those of you who have read the book "Angel with the Golden Glow," our little Angel Tenderheart is on his/her way, and we are so thankful to God for this incredible blessing.

While 10 children could never EVER replace Hayley; this pregnancy gives us hope for the years to come on earth. We have so longed to physically be parents again. I can't even explain what it's been like to have not only your child, but your role as a parent stripped away. Without question, finding out about this baby was the first truly joy-filled moment we've had since Hayley’s death. We are already crazy-in-love with her sibling – he/she can't get here fast enough.

Though it is extremely early, I had to share the good news with all of you who have prayed so earnestly!! To lose a child is beyond horrific; and if I'm being honest, I have to confess to a few moments of doubt. Never doubting God's sovereignty; but definitely doubting if we'd ever have truly good news or be able to enjoy life again. Your faithful words of encouragement have meant so much.

As I'm only five weeks along, we welcome your prayers for a safe, event-free pregnancy and an incredibly healthy sibling at the end of it all. Also, that we don't let fear consume us, and simply enjoy the miracle we have been blessed with.

And, of course, as these anniversary months approach, I'm likely to be a walking emotional disaster and your prayers are doubly appreciated! I'm beyond grateful to have a glimmer of hope with this pregnancy to see me through. Being parents to Hayley was the best thing we have ever done; it was a journey we wouldn't trade for anything in the world. We can't wait to do it all again – with hope for a lifetime.

With love,
Dayna, Alan & ???

PS - Unfortunately, Alan's speech ended up getting postponed. Thank you for your prayers and well wishes; he's speaking at the golf tournament too so we'll need them for that! Speaking of the golf tournament, we are only a little over two weeks away. The golf is nearly sold-out, but we hope you'll consider joining us for the silent auction/cocktail buffet (under "Other" on registration page). 790 The Zone’s Chris Dimino will be emceeing! Registration cut-off is Wednesday, November 9.

Wednesday, October 19, 2005 7:18 PM CDT

First of all, a huge thank you to everyone who completed the Light the Night walk in Hayley's memory – especially Angels in Atlanta. It means so much to us that you would remember Hayley that way.

I can hardly believe it's been 10 months today that she left us. With the weather getting cooler and the holidays approaching, the memories are definitely rushing back. Transplant, her last good days at Thanksgiving, holding her by the fire, and on and on.

People often act like it's an accomplishment that we've nearly made it through a year – and I suppose the mere fact that we've physically survived the heartache IS an accomplishment. Yet, they often act as if we should be excited the year is almost over. Truly, the thought of having lived a year (and then more than a year) without Hayley simply makes me sick to my stomach. It's just wrong! I doubt the length of time will ever get easier to bear...

...but we try to remember that every day is one day closer to seeing her again. Won’t that be the most amazing day!

As we hold onto hope for better earthly days, I always remind myself that though I want her here, Hayley wouldn't want to be back – she’s in a far better place. Every rainbow and sunset clarifies that truth for me a little more.

In other news, Alan will have the honor of speaking before a group of donors who support Cure Childhood Cancer next week. I'm sure Alan would appreciate your prayers for his strength and ability to deliver Hayley's story effectively. He is far braver than me, and I know he'll do a terrific job.

And...the golf tournament is now less than four weeks away! Everything's falling into place and we're really getting excited about the big day. As always, full details are available via the above link.

Many, many thanks for your ongoing prayers and support. Whenever I feel alone, I remember all of you out there rooting for us and am so very touched and encouraged.

Prayers out to all of Hayley’s friends...
Dayna & Alan

Monday, September 19, 2005 7:19 PM CDT

Hi friends –
I guess I've started a bad habit of delinquent updating! The last few days have definitely been extra hard. I miss my little girl so badly. It is nine months today that she's been gone. I feel December looming over me already, and the future just seems unbearable at times.

But, you have heard all that before so, for a change, thought I would focus on the "fun" things going on this month. For those of you who don’t know, September is national childhood cancer awareness month, and we Thomsons kicked it off in fine form.

Much to our surprise, some friends in the neighborhood decided to organize a tennis round robin/pool party on Labor Day. The purpose? Raising money for the neighborhood to sponsor a hole at Hayley’s golf tournament. It was an incredibly thoughtful and generous gesture, and it got even better. When we arrived at the familiar tennis courts Monday afternoon, they had been transformed. Hand-drawn pictures of rainbows from many of the neighborhood kids adorned the fencing and there were pink balloons galore. It truly took my breath away. I usually dread family-oriented holidays when everyone has their children but us, but in that moment and for the rest of the day, I truly felt like Hayley was right there with us. Thanks to everyone who organized the event and came out and made it a special day. And thank you for remembering our little girl in such a special way.

The following weekend, we had the opportunity to attend Chris Glavine's Quiet Heroes luncheon, honoring moms of children with cancer. It was a beautiful event, but more importantly, a great opportunity to see some of the many incredible people we came to know and love on the AFLAC halls AND to meet some of the supporters who had prayed for Hayley for so long. Of course, there were many more that we missed and would have loved to have seen. I would be lying if I said it wasn't hard to be one of the few in the room that had lost their child, but that's, in part, what the event was all about – making sure we can raise the funds for research so that no one else HAS to endure this heartache. Liz Scott, mom of Alex Scott, founder of Alex's Lemonade stand, gave a beautiful, heart-felt speech that echoed so many of my own thoughts and feelings. I honestly don’t know how she delivered her talk with such grace and eloquence, but I'm very grateful that she did.

So, that brings me to week three. All last week Alan was up in the DC area for business and had the opportunity to spend some quality time with Nana and GG and several old friends while he was at it. Meanwhile, I spent an entire day scrapbooking, and managed to complete quite a bit, including eight pages of Hayley’s July 4th pictures. Yikes!

Today marks exactly eight weeks until the golf tournament! Keep spreading the word to sign up before time runs out. All the details are above. So far, Friends of Hayley sponsors alone have raised over $3,000!

And that wraps September up thus far. Thanks for your ongoing support and prayers. I struggle to update sometimes because I so want to deliver good news to all of you out there too. One of these days, I'm sure it's coming...

With love,
Dayna & Alan

PS – For those of you who don't frequent one of my favorite lunching spots, Chilis will be donating all of its profits to St. Jude’s on Monday, September 26th. What an easy way to make a difference. Thanks also to everyone who's decorated peppers in Hayley's memory. We love 'em!

Friday, August 19, 2005

I can't believe it's been a full month since I've updated. Thanks to all of you for your continued postings, well wishes and prayers. We do check them often (even when we don't update) and so appreciate knowing you're behind us and thinking of us and our sweet Hayley.

We just recently returned from a short vacation at Bethany Beach, Delaware, with Alan's family. Nana and GG have been going there every August for years, and it was great to see everyone and just to relax. It's amazing how the sound of the ocean can really soothe the soul – we're thinking we're going to have to buy one of those wave machines for our room now that we're back. We miss the sound of crashing waves!

As great of a time as we had, it was, as always, hard to see all the toddlers running around, soaking in the feel of sand and the thrill of the ocean for the first time. They really were adorable, and we wanted Hayley to be right there alongside them. She was obsessed with water and would have LOVED it. In fact, as I was packing before our trip, I came across a dress Nana and I had bought right before Hayley’s birthday in February 2004. We were fully intending for Hayley's first beach experience to be that summer at Bethany and had found the cutest sundress. For whatever reason, it's been hanging in my closet all this time, and I stumbled upon it when packing for this year's trip. Broke my heart in a thousand pieces that it was never worn...

Daily life is going along as well as possible. We're both enjoying our jobs, although our focus will always be on the home front. We're trying to relax and stay open to whenever God wants to bless us – not an easy task, but perhaps patience is our life lesson! I like to think, as one of you pointed out that even after picking the perfect brother or sister, Hayley has to squeeze in adequate playtime with them – teaching important lessons like how to chase the cats, find circles (kercles), neigh like a horse and paint, of course! No doubt, she will teach them well!

On a lighter note, we can hardly believe the golf tournament is only three months away. Thanks to all of you who have already pledged your support in so many different ways. For those that have put it off, be sure and reserve your spot to play or talk to your company about sponsorship today while space is still available. The details and link to the site are above. Now more than ever, we are determined to drive out childhood cancer.

Thanks, as always, for the prayers and support! We so appreciate each and every one of you.

Dayna & Alan

PS - Please remember all our friends in your prayers - especially Ethan's family as they adjust to life without their precious son, Catie's family as they make difficult treatment decisions and Maddy's family as they approach the one year anniversary of her death - I am dreading that date myself and can only begin to imagine the heartache. Thank you!

Wednesday, July 20, 2005 7:53 PM CDT

Thanks to everyone for their enthusiasm about the golf tournament. I've moved all the details above. Be sure to keep spreading the word and help us drive out childhood cancer!

I've been so moved by all the rainbow sightings you've posted. We saw a beautiful one ourselves last week – always takes my breath away. Not only do they give me a (momentary) sense of peace and assurance that everything will be alright, but each time I'm also struck with the wonder of how awesome heaven must be. I think of all the things Hayley must be enjoying and believe with my whole heart and soul that she's the lucky one.

Meanwhile, it has been seven long months (yesterday) since we held her on earth. I can't even tell you how long it feels. Most of the time, I try to distract myself from the reality of it all or I'm a massive puddle of tears. I struggle so much with what to write on this site. You have all faithfully stood by us through the dark times of Hayley's treatment and the darker times of living without her. Every month I am hopeful to share happy news or indicate that life is, in some way, getting easier. The truth is, we still miss Hayley to the depths of our being and most days, I fear I will never be a mommy again. Perhaps irrational, but when you've witnessed the death of your child, vague assurances of "it will happen" somehow lose their meaning.

So please keep up those prayers for healthy brothers and sisters for Hayley (I'd take 'em by the truck full) and for our continued faith in the midst of the darkness.

Tuesday, July 5, 2005

**New, old 4th of July photos

Hope everyone had a good July 4th! We spent the weekend in pretty low key fashion, and were once again reminded of the difference a year makes. Last 4th of July was particularly memorable because Hayley had just completed what we believed to be her last 30 day hospital day. All that remained of her treatment protocol was three outpatient spinal taps - a breeze, we thought. Then we'd be officially "off treatment" and could move on with our lives.

For the first time since diagnosis, her counts were relatively high and we headed out to a family 4th of July picnic. It was Hayley's first time to be around "normal" kids since diagnosis, and she loved it.

By July 9th, we would learn of her relapse...

... and she would never achieve a solid remission again.

So, our thoughts, as always, were of our sweet girl and her electric smile this weekend - we miss her so.

As many of you know, we decided quite some time ago to host a golf tournament this fall in Hayley's memory, with the intent of funding research for pediatric cancer. Well, we're excited to announce that the CureSearch Hayley Thomson Challenge is officially open for registration! Check out the site at www.curesearchhayley.golfreg.com.

We are quickly finding out exactly how much work is involved with planning/hosting a golf tournament, but we are having a lot of fun with it too. The CureSearch Hayley Thomson Challenge will be held Monday, November 14th at Cherokee Country Club in Dunwoody, Ga, and all proceeds will benefit CureSearch. We encourage everyone to pass the information on to their golfing buddies and talk to their companies about becoming a sponsor. It promises to be a great day, full of golf, prizes and most importantly, raising money to find a cure for childhood cancer. Players will have the opportunity to golf with Tom Glavine, starting pitcher for the NY Mets and former Braves star, who has made curing childhood cancer a primary focus. And each hole will feature a cancer warrior’s or angel’s story – our goal is not only to raise money, but awareness of the far-reaching impact of childhood cancer. Event details can be found by clicking on the link above. For all of our out of town supporters, we hope you will consider becoming a "Friends of Hayley" sponsor.

With your support, we can drive out childhood cancer in our lifetime. Losing even one more child to cancer is one too many.

As always, thanks for the prayers and encouragement...

Dayna & Alan

Please send prayers to Ethan's family as they struggle with his recent relapse and make the most of every moment together (www.caringbridge.org/ga/ethan). Also, to Catie and her family (www.caringbrige.org/ga/catie), as she recovers from brain surgery and they settle on treatment plans for the remaining tumor.

Saturday, June 18, 2005

Hello all,
In honor of Father's Day, I thought I'd do the posting for a change!

Father's Day is just another one of 365 days of the year; so I tell myself as a coping mechanism! BUT it is indeed a special weekend.

Typically we interpret the day as a time for families to celebrate fathers. As much as I enjoy the benefits of that celebration -- breakfast in bed, no mowing the lawn, etc. -- I am now wholly aware of the other side of the day. Father's Day is also a day set aside for Dads to pause, recognize and celebrate their little girls (no matter the age) and sons (no matter the stage ;-)). AND in my case to celebrate the woman that brought my curly haired, chubby cheeked, most precious angel in this world.

So this weekend, as I see little baby girls with bows in their hair to remind me of what was, and older girls holding their dad's hand as they skip along the sidewalk or slide down the waterslide together -- you get the picture -- to remind me of what should have been, I find myself overwhelmed with the other side of the celebration. I am a Dad, and I'm so unbelievably thankful -- too thankful for words -- to have Hayley Thomson as a daughter and Dayna as a wife. More thankful than I could ever write to have played a part in a play (albeit one with far too few acts) of which my daughter was clearly the shining star.

Thank you guys for every single note that you post, and every single time you visit our site. You support means so much to us.

Alan

June 8, 2005

Special prayers to Keith's family as Hayley now has another friend cancer free in heaven. Those initial days are so strange - full of planning and a sense of relief that your child doesn't have to fight any longer. And yet, the deep pain and reality begins to set in - the reality of a lifetime without your child. My heart breaks that another family has to go through this kind of grief. Please keep them in your prayers.

And thanks to all of you for your beautiful postings and stories after my last posting. You have no idea how much they mean. We will treasure those thoughts and memories forever.
_____________________________
Wednesday, May 25
This past weekend, Alan's mom and grandmom (a.k.a. Nana & GG) visited for the first time since Hayley's memorial service. I know it must have been so hard for them to be here. I remember all too well coming home for the first time - knowing that Hayley wouldn't be here waiting, peeking around the corner, calling "mama." I'm sure they expected to see her at every turn.

In spite of it all, we managed to have a "good" visit. It seems we saw more than our fair share of ducks and geese throughout the weekend - perhaps Hayley's way of letting us know she was there. We all miss her so very much.

I went to have my nails done over the weekend, and the woman asked if I had any children. It's a question I'll never grow used to answering. After telling her Hayley's story, she commented with tears in her eyes, "You must still be very sad."

My first reaction was a cynical, "That’s an understatement." And then, as I began to appreciate the fact that she was trying to comprehend our level of loss, I simply choked back, "Yes. I will be very sad for a very, very long time."

It seems that as time passes people talk about Hayley less and less. They aren't as quick to ask how we're doing or mention the loss. Perhaps that is why the conversation with that woman has stuck with me. She acknowledged our pain – and it meant so much to me. Our pain today is as intense as it was five months ago. Five months that our little girl has been gone. Every day is hard. Yes, we can smile and laugh, but underneath, our hearts are broken. It is still hard to believe we have to live the rest of our lives without Hayley.

God must know when I'm near my breaking point, though. Just when I feel like no one cares, He must nudge people my way. Today, it was a hug from a neighbor, a beautiful card from Hayley's housekeeper at Scottish Rite and a fresh wave of donation cards from a friend's run in Hayley's honor. They couldn't have come at a better time.

To each of you who let us know that you care and to those of you who pray for us silently, thank you. You'll never know how much it means.



Tears Are the Proof of Life

"How long will the pain last?" a broken-hearted mourner asked me.

"All the rest of your life," I answered truthfully.

No matter how many years pass, we remember. The loss of a loved one is like a major operation; part of us is removed, and we have a scar for the rest of our lives.
This doesn't mean that the pain continues at the same intensity. There is a short while, at first, when we hardly believe it. It is rather like when we have cut our hand, we see the blood flowing, but the pain has not yet set in. So when we are bereaved, there is a short while before the pain hits us. But when it does, it is massive in its effect. Grief is shattering.

Then the wound is healed, so to speak, the stitches are taken out...

The scar is still there, and the scar tissue, too. As the years go by, we manage. But the pain is still there, not far below the surface. We see a face that looks familiar, hear a voice that has echoes, see a photograph in someone's album, and it is as though the knife were in the wound again.

But not so painfully. And mixed with joy, too. Because remembering a happy time is not all sorrow; it brings back happiness with it.

"How long will the pain last?"

All the rest of your life.

But the thing to remember is that not only the pain will last, but the blessed memories as well. Tears are the proof of life. The more love, the more tears. If this be true, then how could we ever ask that the pain cease altogether. For then the memory of love would go with it. The pain of grief is the price we pay for love.

Author Unknown

Wednesday, May 11, 2005

Thanks to all of you who sent cards and gifts, left messages and called on Mother's Day. It means so much to me that you care and that you knew what a strange and difficult day it would be for me without Hayley. It has always amazed me how a date on the calendar can so drastically affect my mood (after all, every day is hard!), but Mother's Day definitely started out pretty rough. As we pulled out of the neighborhood for church, we saw a young, brunette little girl, running into the house with her Mom's gift. It was the scene I wanted to be living at our house, and the tears began in earnest. At church, there was a beautiful and thoughtful prayer that included grieving mothers. I have to say, it still hurts to know that I fall into that category. Fortunately, the afternoon was filled with tennis playoffs so my mind was distracted. (And yes, we won. We're in the city semi-finals!)

So, another holiday survived. Thank you for the prayers.

Backing up a bit, last Wednesday Alan and I met with a grief counselor for the first time. Recently, Alan and I have often remarked that it seems to be getting harder instead of easier. Well, if you look at a grief "bell curve," the spike at several months out IS higher than the spike after one month. So, it was validation of all we are feeling. The spike at a year is downright scary.

On Saturday, we had the absolute pleasure of meeting Mindi, an e-mail friend from Seattle. A former pediatric transplant nurse, this sweet lady's daily words of encouragement were the one thing I looked forward to during Hayley's days on hospice. She not only brought her own compassion and hospital experience, but her mom's perspective on the cancer-related death of Mindi's brother. She always leaves me a little more encouraged and hopeful about the future. It was an honor to meet you, Mindi!!

And, in other big news, I started a part-time job on Monday. I'm working three days a week in the communications group of a nearby company. It is good time and mind occupier, for sure.

In closing, I wanted to share the words from a mother's day card I received in the mail:

"Motherhood brings both sunshine and rain...

...and we welcome both into our lives, knowing deep down it's the only way to make a rainbow."

Think the writer knew Hayley?

We miss you, little rainbow-painter!

Friday, May 6, 2005

From a friend...

What Makes a Mother?

I thought of you and closed my eyes
And prayed to God today
I asked "What makes a Mother?"
And I know I heard Him say.

"A Mother has a baby"
This we know is true
"But God can you be a Mother,
When your baby’s not with you?"

"Yes, you can," He replied
With confidence in His voice
"I give many woman babies,
When they leave is not their choice.

Some I send for a lifetime,
And others for the day.
And some I send to feel your womb,
But there’s no need to stay."

"I just don't understand this God
I want my baby to be here."
He took a deep breath and cleared His throat,
And then I saw the tear.

"I wish I could show you,
What your child is doing today.
If you could see your child's smile,
With all the other children and say...

'We go to Earth to learn our lessons,
Of love and life and fear.
My Mommy loved me oh so much,
I got to come straight here.

I feel so lucky to have a Mom,
Who had so much love for me.
I learned my lessons very quickly,
My Mommy set me free.

I miss my Mommy oh so much,
But I visit her every day.
When she goes to sleep,
On her pillow's where I lay
I stroke her hair and kiss her cheek,
And whisper in her ear.
Mommy don't be sad today,
I'm your baby and I'm here.'

"So you see my dear sweet ones,
your children are okay.
You're babies are here in My home,
And this is where they'll stay.

They'll wait for you with Me,
Until your lesson's through.
And on the day that you come home
they'll be at the gates for you.

So now you see what makes a Mother,
It's the feeling in your heart
it's the love you had so much of
Right from the very start

Though some on earth may not realize,
you are a Mother.
Until their time is done.
They’ll be up here with Me one day
and know that you are the best one.

By: Jennifer Wasik

Friday, April 29, 2005

Today is our fifth wedding anniversary. It seems like a surprisingly long time now that Hayley isn’t around to "account" for 2 ½ of those years. Goodness knows, when we said "for better or worse" April 29, 2000 we had NO idea what the "worse" would possibly be. Childhood cancer was probably the furthest thing from our minds. Even with all we've been through, I thank God every day that Alan's the one by my side and that we endure it together. He was the very best Daddy to Hayley and is a great husband to me. I couldn't be doing it without him.

In addition to all of our usual friends, please say some extra prayers for Keith's family (www.caringbridge.org/ga/keithskorner). You may have read about this little boy on Kylie’s site. He has relapsed AML (much like Hayley), and has no viable treatment options left. The story hits a little close to home, as you might imagine. Your prayers are appreciated!

Tuesday, April 19, 2005

Four months ago today, we said goodbye to our little girl. It's unbelievable to me still. We miss her like crazy.

I went by the cemetery yesterday, and for the first time, it felt like a beautiful place. The sun was shining, the flowers were beautiful, the lake fountain was running...and there were geese walking all among the headstones. Now, how many cemeteries can say they have geese?

I immediately thought of Thanksgiving when Hayley fed half of her dinner to the two life-size ducks Nana had brought her, and the adorable way she said "duck". It was one of her last really good days. I thought of her love of picking flowers (our trees and bushes were always picked bare). How she loved to splash in our patio fountain.

It was all perfect. It made me light up with a smile. And it broke my heart to know how much she would have loved it...

Thursday, April 7, 2005

Missing Hayley is as much a part of my day as breathing.

She is constantly in my thoughts, and almost anything can take my breath away with pain when it reminds me of her. That seems to happen more often than not lately - there is something about time that intensifies the pain, although I'm assured it does eventually work the other way. Hayley's permanent marker finally arrived at the cemetary, and it's beautiful, but also so very hard to see.

The thought of Mother's Day coming up is almost unbearable. It seems every time you get through one holiday, another looms on the horizon.

And though it often seems it shouldn't, every day life does go on...

Thanks to strong encouragement from my fellow cropping fanatics, I have finally started working on Hayley's second year scrapbook album. It is hard, but also such fun to look through the pictures - even the "bad" ones and remember every moment and expression. I mostly work on my book at home, knowing that attending a large cropping session would be emotional torture. But I'm happy to be making progress on the album just the same. I know it's something I'll treasure forever.

I've also started to do some VERY part-time contract writing work for a friend's company. It's a good focus for my wandering mind, and you can't beat the hours and work-from-home location! Alan’s still loving his new job and the awesome commute. I love it too!

And at last, we have a definitive date for the golf tournament. Mark your calendars for Monday, November 14th! The CureSearch Hayley Thomson Challenge will be held at Cherokee Town and Country Club. We're working on sponsorship brochures and the Website now, and should have more details available before long.

Thanks to all of you who continue to check on and pray for us - even when we don't give you much to go on! We couldn’t get through this without you.

Love,

Dayna & Alan

PS - I've pasted below a copy of an article from the Compassionate Friends about the new "normal" for bereaved parents. The author has other children so not everything applies, but mostly, it’s pretty fitting.

What is Normal Now?

I was jokingly asked recently what normal meant by a friend and I thought about it and jotted these things down. It is amazing what can become "normal" to us. I'm sure you could all change the names and a few circumstances and your normal is very close to mine.

Normal for me is trying to decide what to take to the cemetery for Christmas, birthday, Valentine's day, and Easter.

Normal is discussing with a friend in the Netherlands how different funeral customs are there than here. Discussing how much both our sons loved trains and how the train sets now collect dust.

Normal is sitting at the computer crying, sharing how you feel with chat buddies who have also lost a child.

Normal is feeling like you know how to act and are more comfortable with a funeral than a wedding or a birthday party. Yet, feeling a stab of pain in your heart when you smell the flowers, see that casket, and all the crying people.

Normal is feeling like you can't sit another minute without getting up and screaming cause you just don't like to sit through church anymore. And yet feeling like you have more faith and belief in God than you ever have had before.

Normal is going to bed feeling like your kids who are alive got cheated out of happy cheerful parents and instead they are stuck with sober, cautious people.

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your families' life.

Normal is not sleeping very well because a thousand what if's and why didn't I's go through your head constantly.

Normal is having the TV on the minute I walk into the house to have noise because the silence is deafening.

Normal is staring at every blonde little boy who looks about Kindergarten age. And then thinking of the age Isaiah would be now and not being able to imagine it. Then wondering why it is even important to imagine it because it will never happen.

Normal is every happy event in my life always being backed up with sadness lurking close behind because of the hole in my heart.

Normal is seeing Ian in his long black coat and hat at the cemetery visiting his brother’s grave and thinking, how could this be normal? He shouldn't have to be going through this.

Normal is seeing other kids that are Ian and Isaac's age teasing and playing with their brothers and sisters that are Isaiah's age and feeling so envious of them.

Normal is seeing Isaiah's classmates from church and Sunday school and wondering why he can't be with them. Why him?

Normal is playing my flute for a performance and feeling really great about doing well, followed by an immediate down after thinking how Isaiah would have said, "That was beautiful Momma (whether it really was or not).

Normal is telling the story of Isaiah's death as if it were an everyday common place activity and then gasping in horror at how awful it sounds. And yet realizing it has become part of our normal.

Normal is each year coming up with the difficult task of how to honor your child's memory and their birthday and survive those days. And trying to find the balloon or flag that fits the occasion. Happy Birthday? Not really.

Normal is my heart warming and yet sinking at the sight of a penguin. Thinking how Isaiah would love it, but how he is not here to enjoy it.

Normal is getting up early to exercise (when I really hate exercise) because I know my mental health depends on it.

Normal is disliking jokes about death, funerals. Bodies being referred to as cadavers when you know they were once someone's loved one.

Normal is being impatient with everything but someone stricken with grief over the loss of their child.

Normal is feeling a common bond with friends in England, Australia, Netherlands, Canada, and all over the USA, but yet never having met any of them face to face.

Normal is a new friendship with another grieving mother and meeting for coffee and talking and crying together over our children and our new lives. And worrying together over our living children.

Normal is not being able to rest until you get the phone call that your 15 year old with a school permit has arrived at school just fine. And having the courage to let your 17 year old not call after driving to school because he is insulted that you need to check on him.

Normal is being too tired to care if you paid the bills, cleaned house or did laundry or if there is any food in the house.

Normal is wondering this time whether you are going to say you have 2 or 3 children because you will never see this person again and it is not worth explaining that one of them is in heaven. And yet when you say only 2 to avoid that problem you feel horrible as if you have betrayed that child.

Normal is feeling terrible hurt when you see your child's power point presentation at parent/teacher's conference and that child has listed only one brother. Then you realize the way the information is set up there really is no logical place to list the brother who has died and went to heaven. And how awkward that must of been for him to think about the problem.

Normal is avoiding McDonald's and Burger King playgrounds because of small happy children that break your heart when you see them.

And last of all normal is hiding all the things that have become normal for you to feel, so that everyone around you will think that you are "normal".

~shared by Vicki Windham, North Platte NE Chapter

Tuesday, March 29, 2005

Another angel plays in heaven with Hayley today...Coulter, a boy we met at Scottish Rite, died during transplant recovery in Cincinnati. His mom wrote a beautiful entry for him. If you'd like to read it, his site is the same address as Hayley's except with his name. Many, many prayers to their sweet family....

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Friday, March 25, 2005
I suppose there's nothing like losing a child to bring an entirely new meaning to Easter. This weekend has never meant quite so much to me.

We now know the pain of losing a child first-hand. And having been through it, I have a newfound appreciation and utter amazement that God CHOSE to do it – and not in an easy way at that.

And more importantly, the resurrection...the knowledge that Jesus has paid the cost of our sins, that my daughter will live forever in heaven with Him, and that one day we’ll all be together again.

So, yes, this Easter, there is pain - and plenty of it. The Easter dress I bought for Hayley last year will hang in the closet unworn. She won't walk into church with us, and she won't be hunting for eggs with all the other little girls and boys. But I know that the heavenly celebration will be infinitely greater, and so this weekend, we thank God for making the ultimate sacrifice.

May all the blessings of Easter be yours,
Dayna & Alan

Monday, March 14

Hey everyone -
I will write a full update soon. As you've probably seen on other sites, we've been asked to remove all links to Hayley's friends Caringbridge pages by Thursday due to security issues. PLEASE make a note of everyone's Web address so you can continue to check on them. I'll be leaving the names listed, but you'll no longer be able to click over from Hayely's site. Hopefully, the security issue will be resolved soon as I know all of Hayley's friends and their families appreciate your support.
Thanks!!
__________________________________


Yesterday afternoon, as Alan and I were out running errands, I asked (not for the first time), "Do you think life will ever be good again? I mean, really, really good?" He responded with an emphatic "Yes," but I tend to not be quite as easily convinced. We changed the subject and continued on our way. Not two minutes later, we rounded the corner, and there, right before us, was a gorgeous rainbow. A little answer from above... And yes, the pink was the brightest!

__________________
Wednesday, March 9:
Sorry for the extreme delay in updates. Many times I sit down planning to write, and then think, "What is there to say?!" But we are definitely glad to see the arrival of March and put an endless stream of anniversary dates behind us.

Alan recently changed jobs - still doing financial/estate planning, investment management, etc. It's an awesome commute for him for the first time EVER, and it's a great opportunity. He's incredibly excited, but it was hard for both of us to say goodbye to the terrific coworkers and friends at Ronald Blue. They've been so supportive the past few years. Nevertheless, we feel confident the move was a good one to make - on both a personal and professional level. As for me, my job search has yielded some interesting opportunities - but most likely no decisions will be made until mid-April. Until then, tennis and more tennis, I'm sure. And I've actually remembered how to cook. Thanks to all of you who've supplied an endless array of meals, this week is literally the first time I've cooked in a year!

Generally, we are doing ok. Ok, in the "our lives will never be the same again" kind of way. I know time's supposed to make it easier, but as we approach 3 months, I can't say I've found that to be the case. We will miss Hayley forever, and every little thing reminds me of her. We look forward to being parents again (no news yet), but know that even that won't make us miss Hayley any less.

I can't go without saying how deeply saddened we were to hear about our little friend Shane's passing last week. Shane and Hayley shared the same cancer (AML) and we overlapped quite a bit during extended hospital stays. Shane was probably the most active boy with cancer that you would ever meet. A little cancer wasn't going to keep Shane from racing trucks in the hallways and swinging from the shower rod (literally!). And boy, did he have a soft spot for our Hayley. When he would forget her name, he called her, "the pretty little girl with the bow!" Imagine that! Please send prayers to Shane's family – we know all too well the painful days that lie ahead.

A special thanks to each of you who continue to remember Hayley in special ways. Four people, including our awesome hospice nurse, have contacted us to let us know they're running marathons in honor of Hayley this year. Wow! We will be cheering you on from the sidelines. We've also heard about a bike ride, a motorcycle ride and several blood drives set up in Hayley's honor. And a special thank you to IDI for hosting a denim day to raise money for Hayley's charities. Simple ideas that go a long way towards finding a cure...

I will try my hardest to post updates a little more regularly!! Thanks always for your kind words and prayers. Believe me, they keep us going.

Dayna & Alan

PS - I know this is extremely last minute notice, but if any of you are looking for an excuse to exercise Saturday morning, check out the "Jog for a Cause" walk. The 5K walk starts at the Mansell theatres and benefits several cancer charities, including Camp Sunshine, a retreat for children with cancer. Full details can be found at www.jogforacause.com. The cost is $20 and you can register online or on site the day of the event.

Friday, February 25, 2005

February 25 is a day that will always be burned in our memory. It was one year ago today that Hayley was diagnosed with cancer. How unbelievable, still, that she's not here now.

The day is an awful memory. Hayley had been very sick for weeks, and though we longed to know what was wrong, her diagnosis shook us to the core. My memories are many:

- Hayley's arm turning blue from top to bottom after the diagnostic blood test. Within the next 48 hours, her body would be almost entirely bruised from IV sticks and collapsed veins, all compounded by her low platelets. Even at the very end, she probably never looked worse than during those first few days.

- After confirmation that we were dealing with cancer and not the infection I had hoped, falling into a chair and sobbing "I can't lose her" to Alan and my mother

- The absolute horror that she would have to have a blood and platelet transfusion that very night. I clearly remember thinking, "Great - I not only have to worry about cancer, but about AIDS too." Little did I know how grateful I would learn to be for those very safe transfusions – even requesting them before long. You'd be amazed how some red cells can improve a toddler's personality.

- Hayley finally passing out in exhaustion as they put yet another IV in her bruised body.

- Walking into our room in the AFLAC Cancer Center, in total disbelief that we had any reason to be on that floor.

- Staring at the ceiling all night, day-dreaming of weddings one moment and funerals the next.

And soon thereafter...

- Being told that Hayley’s cancer was "aggressive"; that the AML survival rate was a mere fifty percent. That many children don't survive the chemo she would be given.

- Staring at my swollen, unconscious baby in ICU, uncertain that I'd ever see her smile again.

- And after a few days of complete chaos and non-stop prayers, re-gaining peace and confidence that we would fight this monster and WIN.

Truly, we always believed our story would have a happy ending. Never did we imagine that we would hear a word worse than "cancer" attached to Hayley. But that was long before "relapse" and "hospice" and "end-stage" entered our vocabulary. Our journey had only just begun.

A year later, there aren't many positive things I can say about that day, and I'll always wonder what our lives would have been like if it had never happened. But I will also always be grateful that February 25 wasn't the end. We were given 10 extra months with Hayley; she woke up in ICU 7 days later with a smile on her face, and we were blessed with that smile many, many more times.

We miss you, sweet girl!

As always, thanks for your prayers...
Dayna & Alan

Monday, February 14, 2005

Well, I've been getting the requests for an update...it is just so hard to know what to write sometimes. I could probably say the same thing forever...We miss Hayley like crazy, but we are muddling along and try to enjoy life as best we know how.

Yesterday, we had the opportunity to attend a memorial service at Egleston for all the pediatric cancer patients who died last year. The hospital hosts the remembrance service each year as a way of paying tribute to the inspirational children who graced their halls. They have been told by many bereaved parents that their greatest fear is people forgetting their child, and so the service is the hospital's effort to remember the kids.

The service included a few words about each of the 35+ children who touched our lives for too brief a time. For Hayley it was, "We remember her love of stickers - on everything and everyone. We remember the precious way she spoke. We remember how she looked like an angel dressed all in cats." (- a reference to Hayley’s favorite cat pants. She loved to point out the cats on them to anyone in earshot!). It was simple, but totally moving. I can't tell you how nice it was to hear someone else's memories of Hayley. We were also given a copy of the scrapbook page the hospital keeps on each patient. What a wonderful gift to each family there.

And there wasn’t a dry eye in the house as all the staff and parents sang together, "He's Got the Whole World In His Hands," inserting the names of our own children in one of the verses. Thanks, Egleston, for taking time to remember.

As we drove from the service, down the same route we drove all through transplant, we were amazed that Hayley hasn't even been gone for two months. It feels like an absolute eternity. And at the same time, in the midst of reminiscing, the pain was as fresh as if we lost her yesterday.

From the program:

I heard the flutter of angels' wings a day or two ago
And my mind was filled with the faces of children
That I used to know.
I smiled in reminiscence, but the tears welled in my eyes
For I have often wondered, "why do children die?"
Theologians stand dumbfounded, for no matter how hard they try
No one seems to know the answer to the question - why?

So when I hear the flutter of angels' wings
I prefer to think about what I know,
And that is, how I have been touched by the love
that these children show.
A love not based on conditions, for despite the tragedy and pain,
I've seen their smiles, their outstretched armes, time and time again.

Love is what we're born with, fear is what we learn
And to experience love in ourselves and others is the very purpose
for which we should yearn.
Meaning doesn't lie in things, but it lies in you and me,
And in the sweet and innocent faces of the children that I see.
So let us think about those faces,
and the loving memories each one brings
For in those faces I see angels,
Do you hear the flutter of their wings?

- David J. Sterken

Friday, February 4, 2005

Just wanted to post quickly as I know so many of you worried about us yesterday. It is so strange to me how a date on the calendar can so drastically effect your emotions, but somehow it does. All in all, we got through it pretty well...

We started out by heading downtown to donate platelets (a first for both of us). As many of you know, Hayley received more than 60 transfusions during her treatment. Thanks to generous donors, we had an extra 10 months with our little girl, and we wanted to do the same for someone else.

Now, I am notorious for having low iron - even considered borderline anemic. SO...for 36 hours I ate nothing but steak, raisins and orange juice (to absorb the iron). And by what must be a special gift from God, I passed the iron test yesterday and was able to donate. You can imagine the tear-filled scene that was narrowly avoided! The whole donation process was easy (finger prick's the worst part!) and we look forward to doing it again.

After lunch, we arrived home to a cul-de-sac of mailboxes, adorned with pink bows (along with several other houses in the neighborhood). It was completely unexpected and very moving. Thank you, neighbors!

After some downtime, we headed over to the cemetary, where we sent some balloons up to the heavenly party. From all I read, there must have been A LOT of balloons up there! And then it was dinner out with Grammie & Grandpa, and cake back at home to round out the celebration. I can't say it was a great day, but it was definitely an "ok" day. And we got through it.

Our heartfelt thanks to each of you for all the beautiful postings, e-mails, phone calls, cards, flowers and momentos. It was really touching to see Hayley's life celebrated once again. An extra special thanks to Allie's Atlanta Angels, who gave us the gorgeous cherry tree and inscribed stone. It will be, by far, the most loved tree in our yard and treasured for years to come.

Your support means so much to us - yesterday and every day. Thanks for celebrating our little girl with us!

Dayna & Alan

Thursday, February 3, 2005

Two years ago today, our lives changed forever. God gave us the best gift of our lives - Hayley Elizabeth Thomson.

She arrived at 9:29 a.m. at a tiny 4 lbs 11 oz and 17 ½ inches to a very surprised Mom and Dad. All my life, I've longed to be a Mom, but there was a joy and excitement in having Hayley that we could not have imagined - a joy like none other we had ever known. Our hearts were stolen.

I remember so many things about that day. The excitement of finally being a Mom. Alan unable to remember our address for the paper work, overwhelmed with love for his baby girl. How he blew me away from that first day, being the most incredible father. I remember my Dad's big grin as he pronounced that Hayley and I had the same mouth (about the only feature we shared in common!). The struggles of getting our little "preemie" to eat (a problem soon rectified 100 times over). And mostly, just feeling in love with my daughter; that life was complete and right and perfect.

And two years later, I wonder how it all went wrong; why cancer ever had to enter our lives, how we can possibly be without her. But I try to remind myself that today isn't about what's wrong. Today is about Hayley's life and every precious memory we have of her – all 22 months full of them. Had God told us two years ago, that we could have this little girl for a time, but then he would take her back, we wouldn't have hesitated for a second. The joy was worth all the pain. So, today, we'll celebrate her life - the impact she had on so many. There is no doubt that it will be a hard day, but we're trying our best to make it a happy day too.

I imagine they don't care too much about earthly birthdays in heaven, but I'd like to think, just for today, that they're having a big party, complete with cats and dogs and horses, and lots of pink, for my sweet baby girl. And that Jesus himself will give her the hug I so want to deliver in person.

Happy birthday, Hayley. We love you!!

Saturday, January 29, 2005 5:29 PM CST

Please send special prayers to Chandler, Kylie & Jack W. They are each facing scary symptoms and set-backs this week.
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Iced in tonight, I figured it was time for an update - and an overdue one at that. We continue to make advances and set-backs in adjusting to life without Hayley.

On the positive, we're settling in on a date/venue for the golf tournament, and have had several productive meetings to that end. As we read about all of our friends battling, I am CONSTANTLY reminded of how critical the need for research is. I neglected to mention in the previous posting that CureSearch now has green wristbands (much like the Lance Armstrong LiveStrong ones), which read "Reach the Day." They refer, of course, to the day when every child with cancer will be guaranteed a cure. And oh, how I long to see that day. I have quite a stash of bands at my house, so if you are local and would like one, just send me an e-mail. They are $1 a piece. You can also order wristbands at www.curesearch.org, under "How You Can Help/Giftshop."

Ok - back to our "advances". #2 - I interviewed for a part-time marketing position with a great nearby company. If nothing else, it will be something to keep me busy. We'll wait and see what happens. Meanwhile, Alan's right back into the swing of things at his office.

But perhaps the most monumental breakthrough of the week...I managed my first trip into Gymboree to purchase a baby gift. (Yes, I guess I believe in self-torture to even consider buying a gift there, but I wanted to do it). I will always associate that store with Hayley, and even as I bought the gift, it felt wrong not to purchase something in 2T. But, with the help of a friend rushing me through, I managed it without any waterworks. (I have been known to disolve in tears upon receiving an e-mail from Gymboree, so this was no small feat).

So, small steps of progress. But in many ways, I think the more time that passes, the harder the reality hits. As Maddie's parents so eloquently said, "It doesn't really get easier. You just get more and more practice at living with it." And sometimes, that, in and of itself, is just depressing. There are still days when we are just completely overwhelmed with sadness. Thursday was a bad one for me - I pretty much cried all day. And then, I found I was "arguing" with myself- part of me saying that I needed to pull myself together, and then alternately, telling myself I have every reason to cry every day for the rest of my life if I want to. We miss Hayley, and we always will.

With Hayley's birthday looming less than a week away, the following song says more than any words I could write. You can hear it play on Carter's site, but wanted to copy the words here, as they speak so powerfully to me....

"If home's where my heart is, then I'm out of place."

Thanks for your prayers,
Dayna & Alan


Homesick - by MercyMe
You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

In Christ, there are no goodbyes
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow

I've never been more homesick than now

Wednesday, January 19, 2005

One month ago, Hayley's sweet soul left this earth.

It feels like a lifetime ago; an absolute eternity since I held her in my arms. And yet, when I close my eyes, I can see her in front of me, smiling a mischievous grin, peeking around the furniture and chasing the cats. The presence of her absence is powerful and painful.

So, it's a month later. A month since the unthinkable happened and we lost our little girl. Are we ok? Well, that's a relative term now. Do we spend most of the hours in our days smiling and laughing? Actually, yes, we do. Do we have moments of overwhelming sadness, though? Absolutely. There is no question that life will never be the same. How could it be? I've heard one parent say that when you lose a child, it's like you have a sticky note taped to your head which reads, "My child is gone." You process everything you hear through that sticky note, and everything takes on new and different meaning.

We try daily to take to heart the words of this bereaved Mom, looking back over many years with new-found perspective, "Life does go on after the death of someone you love...even if it's your child. It isn't always easy or fun or purposeful, but it's like anything else...life is what you make of it."

And so, I suppose it's appropriate that we spent much of today beginning work on a charity event honoring Hayley, which will benefit CURESearch National Childhood Cancer Foundation. With the support of CURESearch, Kristin Connor and Tom & Chris Glavine, we are planning a golf tournament for November, and we couldn't be more excited. It promises to be an INCREDIBLE event! Since the time we came home on hospice, we had planned to hold a tournament in 2005 for Hayley's funds. Alan broached the subject at his meeting with Kristin a few weeks ago. Wouldn't you know that CURESearch had just asked Kristin to host a tournament in Atlanta? That can only be another "God-thing." We are thrilled to team forces. I know many of you will be eager to know how you can help - and don't worry, we'll let you know soon enough! For now, just know how excited we are to help fund research, so no other parent has to walk in our shoes and lose a child to cancer. We hope you'll help us reach that day!

Thanks, as always, for your prayers, which are still very much needed. Hayley would turn 2 in two weeks. I can't even explain how much we wish she were here!
With love,
Dayna & Alan

PS - For those of you unable to open Kylie's site, the surgery went well. The doctor's were able to remove about 80 percent of the tumor! Lots more treatment and recovery to come for Kylie and her family, but we're thrilled that one hurdle is almost behind them. Also, please send prayers to Mary Grace's family as she undergoes critical scans tomorrow. Thanks!

Sunday, January 16, 2005

Well, we've made it through another week. Alan's return to work was smooth for both of us. Your prayers along with a never-ending supply of friends for "lunching" and talking definitely helped! :)

Almost daily, we continue to hear stories of the impact Hayley's life made - people who have grown closer to God, their families and friends because of our little girl's journey. It is so comforting to know Hayley's life had great purpose. At the same time, nothing will ever be a "good enough" reason to us. We miss Hayley SO much.

I've found the grief process seems to be a stream of never-ending "letting gos." We let go of Hayley's body weeks ago. But now we must continue to let go of our dreams for her, the vision of how our family was "supposed to be," etc. It's a constant adjustment for sure.

And people continue to say the darndest things! Following our tennis match today, we went out to dinner at the local pizza parlor. Halfway through dinner, a woman walked up to our table. She proceeded to say (and I'm not making this up):

"I don't know if you guys have children or not...but if you don't...I just want you to know that you'd have really beautiful children. So, if you don't have kids, you need to go home and procreate!"

And then she was off in a flash, leaving us nothing short of stunned. We had to laugh afterwards and acknowledge she was absolutely right, as we looked at the picture of Hayley in Alan's wallet!

We have a bunch of anniversary dates headed our way this month. Please keep us in your prayers as we face each one. Also, please remember Hayley's friend Kylie, as she heads into major surgery tomorrow to remove her tumor. This is a critically important day for Kylie and her family.

Thank you for all you do and the many ways you support us,
Dayna & Alan

Sunday, January 9, 2005

"Do you have any children?"

It's one of the questions I've been dreading, and this week we've been asked it twice. In both cases, it was an innocent question from a sales person. But time stood still while we processed all the emotions that simple question can evoke. I mean, how do you respond? To simply say "no" feels like a betrayal of Hayley and all we've been through. And to say yes, brings on more questions, complicated and emotional to answer, for a person we'll likely never see again. It felt like an eternity passed before I finally managed a lame, "Not at the moment."

It worked for the situation, but I imagine it will be a LONG time before an answer ever comes easy to that one.

Tomorrow makes a true transition back to "normal" life, as Alan heads back to work, after nearly three months off. There are really no words to express our gratitude to Ronald Blue & Company, for giving Alan that time with Hayley. Those weeks during and after transplant hold precious memories that we'll never, ever forget. Talk about a priceless gift...thank you. What an awesome employer you've been.

Not much other news to report, really. We've been plugging along, doing 'normal' things as much as possible. Alan had a great meeting with Kristin Connor about volunteer work we might be able to do through CureSearch to honor Hayley, and there are some interesting possibilities. More on that once things solidify a bit, but know we are excited to help this awesome organization!

At long last, I've copied below Anne Shawcross' remembrance of Hayley from her memorial service. It won't do the awesome job she did justice, but at least gives those of you unable to be there, one more glimpe of Hayley. Enjoy.

Thanks for checking in on us and for your faithful prayers.

Dayna & Alan

______________________________
From Hayley's Memorial Service:

Hello. My name is Anne Shawcross and I am one of the many nurses that fell in love with Hayley and was given the blessing of taking care of her over the past 10 months. I speak for all of us in saying that she had our hearts from first sight.

I know there are some of you out there that have not been able to see Hayley, Dayna, Alan, and Hayley's Grammie, Grandpa and NaNa since their lives went into a whirlwind on Feb 25th (just after Hayley turned one). So I am here before you to share some memories of the Little Angel that brought us all here to church today.

Walking was an obstacle that Hayley overcame before our eyes...at first it was an IV pole carrying her, then at the end of March she was SO close to letting go of Mommy and Daddy's hand... (We know now that she probably could have walked earlier but she just liked to keep something in both of her hands!!) and soon after she was on her own with the IV pole chasing after her.

And then she not only walked, she danced...especially to Barney.

Thermometers were also an obstacle for Hayley. At first, there was nothing worse in the world to Hayley than having her temperature taken. She would scream as if to win the record for screaming the loudest, but soon we could take her temp without a peep and before long we would have to leave the thermometer in her bed for her to play with or else...she would scream! She always kept us on our toes.

Some of her first words were mama, dada, moo (when she saw a cow), neigh (when she saw a horse), "gog" (also known as dog), "nano" (also known as playdough), "kercle" (also known as circle) and NO. During Hayley's steroid days, I think the first 7 words mentioned were placed on hold in her vocabulary and NO was the word of the week, even when she wanted to say YES.

She loved horses...I’ve never heard the word neigh with more excitement in my life. If she could chase anything it would be a cat. And if we were all starving, and Hayley was the only one with food, you would have to take your turn because any dog that she laid eyes on would be fed first.

Speaking of food...it was one of Hayley’s passions in life. When she couldn’t eat (which was rare), it would break your heart because she would hold food in each of her hands gazing longingly at it, as if it were a long lost friend. She loved ham, cheese, and 3 Musketeers bars. She had to keep those cheeks huge for all of us to fall in love with.

I wear a pin on my name tag called CHEEKS – a little angel that we sell in our gift shop. Hayley, not paying attention to any other pin on my badge, would always pinch cheeks. I think she was trying to say "I see those all around me and I will be one soon," as she smiled.

Did she know God’s plan?

If Hayley had to be sedated for a procedure, Versed was her drug of choice. As the drug started to make her a bit loopy, she would smile and say "Circle" as she gazed in the air. Sometimes there would be circles on the walls of the room and sometimes we would not be able to see a circle anywhere.

At those times was she seeing the Halo above her head and smiling?

And I believe we've all read that Hayley had to keep hold of something in her hands almost at all times. It was her comfort and it was always something that pertained to what she was going through at the time.

When she couldn’t eat...it was food.
When she was itching all over...it was a bottle of cream in each hand.
When she was hurting or sad...it was mommy or daddy’s loving arms.

Now she is holding the hands of our Lord..the safest place she could possible be...
And HE is holding tightly to her.

Hayley:
The people’s lives you have touched are countless. People that have only seen your picture are now saved because of your story. You have taught us to enjoy the simple things in life, to make up our own words for things, to hold hands as if no one is watching, to learn to dance, eat and keep eating, that life is a boundless privilege, and most importantly never take anything for granted.

You never know if by looking into the face of a child you are looking into the eyes of God. Thank you. You can now play with little Madeline Maxey and the other angels cancer free.

Dayna and Alan:
Your words to us in one of Hayley’s journal entries read, "Each and every single day is a gift. Today, we are taking nothing for granted. We hope you won’t either." You emulate the fruits of the spirit: Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control. When it is time for you to meet our Father in Heaven, I believe he will say to you, "Welcome home my good and faithful servants, your angel has been here since Dec. 19th of 2004. She is smiling as she can now fill her hands again with yours."

Dennis, Linda & Lynda, Hayley's loving grandparents:
It is unfathomable to think that people have to deal with the loss of a child, but to have to deal with the loss of a grandchild and bear the grief of your own children is beyond words. Your unceasing devotion to your children and Hayley teaches us to embrace the hardships of life; for with God's help we are given the strength to be a rock for others as you are to Dayna and Alan.

As I conclude, Dayna and Alan asked me to read the poem, "What Cancer Can Not Do"

Cancer is so limited
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot invade the soul,
It cannot steal eternal life,
It cannot conquer the Spirit.
It cannot lessen the power of the resurrection.
(Author – Unknown)


But most of all, Cancer cannot take away memories of...
Horses
Cats
Dogs
Things in two hands
Nano
Circles
Thermometers
Mama
Dada
NO!
Ham
Cheeks
Cheese
Food
Butt Cream
Walking
Talking
And Bows in your hair

Hayley, we’ll miss you so!

Tuesday, January 4, 2005

Our few days at home have been a whirlwind so far. We've managed to get a few of the necessities accomplished - namely getting Hayley's gravemarker ordered. Surprisingly, it wasn't as emotional as we anticipated, although it was certainly still draining. I find I can be somewhat detached about anything related to the cemetary. That's just not where I feel closest to Hayley. After all, I know she's not really there!

On the other hand, there's no telling what other little things will set us off. For me, her shoes are the hardest thing to see. But it can be anything. Sunday, we slipped into the back row at church, not sure we were really quite ready for a crowd. Wouldn't you know we sang, "Blessed be Your Name," which was the last song of Hayley's memorial video. Needless to say, the waterworks started. We find ourselves alternating between flooding ourselves with watching videos and looking through photos and finding it somewhat painful to do. An interesting balance.

Mainly, we are keeping busy...trying to get back into shape after spending the bulk of the year sitting in the hospital and eating everyone's delicious food!! Trying to get back in gear with our old tennis teams. Trying to enjoy our unwanted 'freedom' by taking in some movies and dinners out. And most importantly, trying to figure out how we can help in the battle against childhood cancer so that no other parent EVER has to feel the way we do now. We struggle to find our unique ways to make a difference - but we are working on it diligently and know it will take some time!

Our sincere thanks to each of you for your encouragement as we adjust to this strange new life without Hayley. Your e-mails, prayers, posts and cards encourage us in ways that we can't really express. They have been read not just once - but often, and always leave us feeling just a little bit better. Thank you.

I promise to post Nurse Anne's remembrance on the next update! For now, enjoy Grandpa's letter from the memorial service below, as well as a great article from Brandon's mom, which appeared in the AJC yesterday. We can't wait for the day we find the cure!

Thanks for your continued prayers. Please remember Hayley's friends, too.

Love,

Dayna & Alan
________________________________

Grandparents' Memories from Dennis Lee - Read at Hayley's Memorial Service

Every grandparent feels they have the most precious of grandchildren, and they do...because they have been handpicked by God for just the right family. We feel so blessed to have been given the gift of Hayley. From the moment we heard of her we loved her; she owned our hearts the first time we saw her.

Today we praise God that He created Hayley in such a special way that she has given us a lifetime of joy and blessings in only 22 months:

• The joy of watching our own little girl become a warm, caring, loving mother

• Snuggling in her grandparents arms and exuding love and contentment as a newborn

• Never complaining at being asked by Grandpa "why are you so cute?" over and over and over – the answer given by someone was always "that's the way God made her."

• Sleeping over at Grammie's house without a fuss

• Teaching us how to really be thankful at Thanksgiving and to rejoice at Christmas and Easter

• Always teasing us with premature signs of first rollover, first crawl, first steps...When she did it – it was always perfect

• Playing the crowd at her first birthday party even while feeling lousy

While her first year was unforgettable, it was after being diagnosed with leukemia that God began to show us that He had an extraordinarily special plan for Hayley. It was if God said, "Hayley, I'm asking you to go through a very difficult time but I've given you the perfect parents to help you through it and you will help draw hundreds of people closer to me."

And, seemingly, Hayley said "Yes, Lord, I will do it."

We had dreams and visions of all that we wanted to share with Hayley and help teach her - how to walk, how to tie her shoes, to ride a bike, how to hit a ball and play catch, to learn about this wonderful world we live in and especially about our loving God.

Instead she became the teacher as she taught us. Throughout ten long months of battling a dreadful disease, Hayley:

• Smiled her way through the harshest chemo treatments imaginable, earning the nickname of "Teflon Hayley". She taught us what it means to be content no matter the circumstances.

• Used her joyful spirit to bring out the goodness in all who encountered her. No one was immune from her smile and joyful spirit

• Showed us that hospital rooms can be a warm home and that pediatric nurses are angels.

• Inspired thousands worldwide with her parents' daily updates of steadfast faith amidst heartbreak.

• Created a bond with other families of childhood cancer that will never be broken.

• Created a passion in us to fight childhood cancer for the rest of our days.

• Reminded us how fragile life is and to never, never take it for granted.

• Showed us how to fight with all you've got as long as you can, never complaining

• Showed her Mommy, Daddy, Nana, Grammie, and Grandpa how to love as they have never loved before.

She taught us so much more about our God, how much bigger He is than we had imagined. We saw signs of His kindness and love through the long ten months of our battle with leukemia. And we learned that in the darkest of nights, when you feel so alone in your pain and suffering, that that is when God is closest.

Grammie was talking with Hayley just a few days ago and shared that "Hayley shouldn’t be afraid. That soon God would reach down from heaven and pick her up in His all powerful arms, snuggle with her and love her and bring her home with Him, rejoicing over her. At the same time God was also going to reach down and wrap her Mom and Dad, Grammie and Grandpa and Nana in those same arms to love them and give them strength for the days ahead."

She taught us how to say goodbye. She gave us a glimpse of heaven and it is far more real than before.

While our hearts break at losing her, these memories will never die and we rejoice in knowing that we will be at her side throughout eternity, because of God's saving grace. Farewell, Hayley - your Heavenly Father, grandfather and great-grandparents are welcoming you to heaven and we will see you soon!


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MONEY STEPS UP FIGHT VS CHILDHOOD CANCER
By Kristin Connor
Published on: 01/03/05

Somehow, as busy families at Providence Christian Academy in Gwinnett County and throughout the surrounding community prepared for the holidays, they found time to come together on a cold Friday night to honor and remember a little boy who touched more lives in his seven short years than most of us touch in a lifetime.

Carter Martin died on Sept. 12, having lost his battle with a form of bone cancer called Ewing sarcoma. Those who knew and loved Carter, and those who didn't know him but who were heartstruck by the impact of this little boy's struggles on all who did, refuse to let his memory die or his death be in vain. So on Dec. 10, a caring community turned their grief into action, raising nearly $50,000 for childhood cancer research in one night.

This is how it is with childhood cancer. Once you know and love a child who has it, you can't let it go. For those who knew or knew of the nearly 3,000 children who died last year alone at the hands of the disease, their hearts will never be quite the same.

Thousands more have survived the disease's wrath, but at great cost — limb amputations, rounds and rounds of toxic chemotherapy, indescribable and constant pain, and most importantly, the loss of childhood joys and innocence. These children learn all too tragically that even the powerful love of their parents and a strong faith in God does not keep them safe from the wrath of cancer.

Because childhood cancer is relatively rare, particularly compared to the incidence of cancer in adults, many people have no idea of the devastating impact cancer has on a child, his or her parents, brothers, sisters, grandparents, friends and the larger community — like Carter Martin's entire school. Many people have no idea of the dire shortage of funding dedicated to research for cures for childhood cancer, no matter that cancer takes the lives of more young people under the age of 20 than any other disease.

But this level of awareness is changing, and not a day too soon. Through Web sites maintained by parents of children with cancer and through the bravery of children like Carter and the thousands of others like him, the world is becoming aware. The hearts of our nation were captured by 8-year-old Alex Scott in 2004 as we learned of her efforts to raise money for a cure through a lemonade stand. Alex's lemonade stand raised more than $1.5 million last year.

Curing Kids Cancer!, a new program of CureSearch National Childhood Cancer Foundation, will raise millions of dollars for pediatric cancer research in children's hospitals nationwide. This program began right here in Atlanta, inspired by Killian Owen, who lost his battle with leukemia last year at only 9 years old. Determined to spare others the same fate as Killian suffered, Killian's mother, Grainne, has become a tireless advocate and leader in fund-raising efforts.

Even professional athletes are rallying behind our children. Tom and Chris Glavine have become champions of the cause, persuading Major League Baseball to raise money for research through the Commissioner's Initiative for Kids. Right before Christmas, Major League Baseball delivered a check to CureSearch for nearly $725,000. With the hope that this money brings, I cannot think of a better holiday gift for children with cancer.

The promise of this local and national support for childhood cancer is unmistakable. St. Jude's Children Hospital in Memphis has launched a national advertising campaign to raise money and to bring awareness to the need for more research into childhood cancer.

We know concerted research efforts work. The fight to defeat cancer has witnessed amazing success just in my lifetime, as survival rates for childhood leukemia have gone from about 10 percent to nearly 85 percent. Success rates for other childhood cancers have improved, too. The dramatic growth in survival rates for some cancers has occurred only because of targeted research dollars. We know this approach works.

But we must do more — much more. Many childhood cancers are so rare that funding for them is limited. The reality for too many children and their families and friends is that cancer kills.

Yet doctors tell us that a cure for childhood cancer can be found in our lifetime with the proper funding. We in Atlanta are determined to deliver the funding to these doctors so that they can deliver a cure to our children. Please help us fulfill the promise of a cure as we move into a new year.

• Kristin Connor, a lawyer, has taken a leave of absence from her legal career to work with the National Childhood Cancer Foundation.

Friday, December 31, 2004

Just arrived back from Vieques (aka "small girl island"), Puerto Rico. In spite of the circumstance, Alan & I had a great time, full of relaxing by the pool and beach and our fair share of adventure too (prop planes and scooters, anyone?!). Granted, we still thought about Hayley constantly, but mostly in a happy way. Wouldn't you know this particular island had wild horses roaming through the streets? We heard Hayley saying "neigh, neigh" in our heads constantly! :)

I always hoped that 2005 would be our cancer free year, and by all accounts, it will be. But never did we imagine in this way. As 2004 draws to a close, we can honestly say it was the worst year of our lives. Having a child diagnosed with cancer, let alone relapse, let alone pass away has got to qualify for the worst year ever. But the truth is, 2004 was also the BEST year of our lives. In no other year, did we see our little girl learn to walk and talk. In no other year did we watch her fall in love with horses and chase the cats. In no other year did we see her learn to paint and dance. In no other year did we see her do ALL of those wonderful, amazing things that made up who she was. And so, the end of the year is surpringly hard.

Coming back tonight probably made it more so. It seemed like Hayley should be waiting here for us, but of course, she wasn't. The reality is definitely sinking in. We look at her pictures and feel such joy at seeing her smiling face and such pain that we won't see that smile in person again. It is beyond comprehension that I won't ever hold my daughter again. How can that be, I often wonder? We also know we have lots of decisions to make over the coming days, all making it more "real"...grave markers, moving her things, etc. Our hearts are definitely heavy.

We miss Hayley. And strong as they are, our beliefs don't make us miss her any less. What they DO do is give us hope and comfort in the middle of the pain. We know in our heads that Hayley is unbelievably happy in heaven. We know we were blessed to have her for the time that we did. We know we will see her again one day. We know that God, our family and friends will get us through this storm.

Now, if only our heads and our hearts would talk!! But I suppose that's what this process is all about...and we are only at the beginning.

Please continue to pray for us in 2005. We will definitely need it!! I promise to post Grandpa & Anne's remembrances from the memorial SOON.

Ooh..one last thing. Believe it or not, on our flight to the Caribbean, I looked out the window at 30,000 feet, and there was a rainbow!! Pink was the brightest, of course. I had no idea you could even see a rainbow from that vantage point. Apparently, God put our little painter right to work! :)

Wishing you each joy in 2005,
Dayna & Alan

Thursday, December 23, 2004

Just a quick note to let everyone know we're taking a week off from updating the site for the holidays, but I promise to post Grandpa's and Anne's tributes first thing in 2005. Some wonderful friends have made it possible for us to have a little R&R in the Caribbean over the holidays, and we are taking full advantage. We'll be going to a little island off of Puerto Rico, locally known as "Small girl island." How appropriate! We know we'll have to make lots of decisions about Hayley's things when we return, but we're happy to put it off for a week. Special thanks to the Wrights and Bowlings for making the trip possible.

Obviously, it's going to be a very strange Christmas for us. The presence of Hayley's absence is everywhere! And even in Puerto Rico, there will be a 1000 things to make us think of her. Through those sad moments, we'll smile thinking about Hayley celebrating Christmas in heaven. What a party it must be!!

May each of you have a wonderful Christmas and holiday season. Cherish every moment. Every single one.
All our love,
Dayna & Alan

WEDNESDAY'S UPDATE:
The past few days have been a whirlwind, all culminating in today's burial and celebration, which in a strange way, added up to one of the greatest days of our lives. I am not even sure I have the words to describe the day – the emotions were truly overwhelming.

We started with the hardest part. The family burial was private, simple and beautiful. Hayley's gravesite is at GreenLawn cemetery in Roswell, and is in a great location, overlooking the lake. Her all white casket was topped with an unbelievably beautiful array of pink roses and baby's breath, exactly what you'd picture for Hayley. She was buried with many of her favorites, which we placed the night before - one of her dogs (wearing a ring Alan's Dad made years ago), her favorite book, her favorite blanket, her favorite ball, a tube of cream (ha), her pacifier, her children's Bible, a special bracelet from her great grandmother and an angel necklace given to her by one of her "cancer" buddies. The graveside service was short and poignant. It was definitely hard to walk away afterwards. Although we know in our heads, she's not "in" that casket, the separation is harder to make in our hearts. But we got through it. To lighten the day, the entire family wore dog and circle stickers in honor of our sweet pea. I know it made Hayley smile to look down and see that!

Then, it was off to the memorial service. We're so glad we did the burial first so that we could end with the celebration. Truly, I do not think any words I write could do the memorial service justice. To me, it was entirely breathtaking. I'll do my best to capture the highlights.

The prelude and postlude piano music were performed by friend, Stanton Lanier. Incredibly beautiful and peaceful music, but more meaningful than just that. Stanton's piano melodies were the ones that Hayley fell asleep to every single night in the hospital. How special to have him play at our service. The night of Hayley's passing, Stanton actually composed another song, titled "Peace," which was mixed in among the pieces he played today. I only regret, that with the family sequestered in a back room, we didn't get to hear it, but I know we will soon. Thanks, Stanton, for being a part of Hayley's day.

Once everyone was seated, the doors were opened and the family procession began. I can't tell you how we were completely overwhelmed with the feeling of love when those church doors opened. There were just SO many people from EVERY part of our lives –the neighborhood, church, co-workers, hospital staff, fellow "cancer" parents, college friends and more. I hardly dare to guess how many. And how neat to see the sea of pink that so many wore in Hayley's honor. With our hearts in our throats, we somehow made it down the aisle.

The service included so many incredible things - letters describing the impact of Hayley's life, a remembrance by Anne Shawcross, one of our favorite nurses at Scottish Rite (I know everyone can at least partially understand now HOW amazing our oncology nurses were), a heart-felt letter from Hayley's grandpa, an incredible rendition of Mark Schultz' "He Will Carry Me," a picture/video slideshow of Hayley's life, two congregational songs, a beautiful sermon, and, my very favorite part, the eulogy from Alan. Together, we wrote the tribute for Hayley's service and somehow, someway, Alan managed to deliver it with incredible emotion and strength. I have posted the whole eulogy below - although it will never read as well as Alan delivered it. I have never been more proud of him in my entire life. I know Hayley was proud of her Daddy too.

Every single thing about the memorial was perfect – just like Hayley.

The reception afterwards was wonderful also. Tables, decked with white and pink tablecloths, some topped with balloons, others with candles and rose petals. ALL adorned with photos of Hayley. The food was great, and we got to talk with ALMOST everyone who attended. It was the perfect way to honor our daughter. Our thanks to each and every person who helped pull it together so beautifully and to each of you there in person and in spirit.

At home, the family celebration continued. We took the balloons from the reception and each attached a note to them for Hayley. We then released all of the balloons up to heaven. It was so fun to see them fly high away from us in a sea of pink and white. Then, it was back inside for a champagne toast to our favorite angel.

You can see, at least in part, why it was such an incredible day. I wish I could describe more, but I'm beyond exhausted so I'm going to call it a night. I will try to post other parts of the service in the coming days/weeks. We love and thank each of you for your steadfast support. For us, the hardest days are still ahead.

Dayna & Alan


Tribute for Hayley's Memorial Service - Read by “Daddy”

Dayna and I want to thank you for being here today for Hayley and our family and for the incredible kindness, support and abundance of prayers that we have received throughout this journey. One of the many joys we have experienced is seeing the love of God pour out through each of you. We truly have witnessed the body of Christ coming together to help us through this time. Your presence here today, the day we laid Hayley’s body into the ground, means so much to us.

Over the past few days, we've had a lot of time to reflect on wonderful memories of Hayley - her life, her personality, her impact, and the lessons she taught us all.

And, what better place to start than at the beginning?

We chose Hayley's name when Dayna was five months pregnant. We were so excited to know that we were having a little girl and we wasted no time settling on the name, Hayley. Often we were asked why we chose it, and we never had a very good answer. It wasn't a family name. It's not a bibilical name. It wasn't after the comet. We just liked it. Plain and simple. We used to joke at just HOW meaningless the name was, as the baby books told us that it meant, "field of hay" in Old English. But we liked the name and weren't deterred.

It was only halfway through Hayley's initial chemo treatments that we found out how appropriate her name really was. Dayna, the avid scrapbooker, purchased a "birthday keepsake" (I'm sure I rolled my eyes at this!), which included an etymology of Hayley's name. Imagine our surprise to learn the Norse etymology of Hayley - It derives from the word "Hero." Hero. Could there be a more appropriate name for Hayley after all she was enduring with a smile on her face? How perfect and true.

Hayley was unpredicatable from the moment of her birth. Dayna's due date was March 17th. Hayley decided to arrive February 3, a full six weeks early. The doctors warned us that she might have to spend several weeks in the hospital. Apparently, they were not familiar with the Norse Etymology of "Hayley", either. She arrived tiny, but she was perfect. She had the lungs of a full-term baby and was actually cleared to go home before Dayna. We often wondered why she arrived so early -- and now we know. Those extra six weeks were God’s gift to us - a gift of precious time with our daughter.

Hayley continued to do the unexpected by quickly rising from the 4 lbs 5 oz we brought her home at to the roly poly "95th percentile" little girl she was by her first birthday. Her rolls were plentiful and creases deep. She was the picture of health: a plump, chubby, completely loveable baby girl.

And as her body developed at the time of her diagnosis, so too was Hayley's personality beginning to emerge. From Day 1 of her battle with leukemia when she laid in her ICU bed through the 10 months of her fight, she not only survived, but she took on life with great enthusiasm and admirable courage.

We'll never forget how she sang "ei-ei-oh" on the way to her first surgery. How her curls framed her face. How the hospital scale became one of her all-time favorite toys - perfect for peekabo and dancing. How she could pick out a dog, horse or cat whether in books, in the neighborhood, or anywhere - faster than we could. She humbled us on a number of occasions when Mom and Dad incorrectly told her "there is no dog in that picture," only for us to later see precisely the dog that Hayley saw seconds earlier.

Circles - rather "Kirkles" - were her favorite shape, and she could point them out in the strangest of places. She loved to stomp her feet to "If you’re happy and you know it" and march in place. If she felt like playing, she'd plant a sticker on your shirt or ask you to hold her playdoh. Her emotions were never forced. If she wanted to blow a kiss, she blew a kiss, if she wanted to wave goodbye, she waved goodbye. She was genuine through and through.

We will miss the twinkle in her eyes and her gigantic grins, the way she bounced up and down and clapped her hands when Mommy or Daddy would walk into the room. We will miss her giggle. Her beautiful smile, her long eyelashes and oh, those cheeks. We will miss her saying "more, more, more," and "no" before questions were even out of our mouths, as well as every other magical, if mispronounced, word she spoke. We'll miss her asking for her dogs and chasing the cats. We'll miss the way she picked flowers and held them close to her perfect nose. We'll miss her diligence in taking our temperature and blood pressure, the true nurse in training. We'll miss her painting and coloring with us and the special way she poured tea. We'll miss the way she cleaned things with vigor - from the hospital floor to the IV pole to her stuffed animals. We will miss her sweet kisses.
Our hearts are broken, no doubt about it, but our sadness is not for her – Hayley is whole and healthy now. Her absence hurts so much because her presence brought us so much joy.

Friends and family have commented that though she wasn't named for it, Hayley's life is much like a comet that burns hot and radiantly, but flashes through the night-time sky much too quickly. And much like a comet, Hayley has left a shimmering trail of light - her afterglow - that cannot be forgotten. Fingerprints that she has left on our hearts encourage all of us to love deeper and stronger and to keep our focus heavenward.

Many of you know, we have seen God's hand move throughout this journey. The people he placed in our path and the similarities of their stories were too close to be anything BUT from Him. The 80 bone marrow matches, Dayna meeting Jenna, the man I met in the flu shot line, the canceled MRI. Looking back, these events weren't signs that Hayley would be granted a miraculous healing on earth as we had hoped; however there is no question but that they were divine appointments set strategically to give us hope when we needed it most and to give us strength that would allow us to make it through the next turn.

Before Hayley got sick, I was the privileged one who would put her to bed every night. Our routine included me telling her that she could grow up to be anything she wanted. Over the past year, we've come up with many professions we've decided would be perfect based on her favorite activities - a nurse, a veterinarian, a gardener, an artist, a housekeeper...the list goes on.

Little did we know that she would grow up to be the thing we had called her since we first laid eyes upon her - a precious angel of heaven.

And so, to our angel and to God, we say thank you.

Thank you, God, for allowing us the privilege of being Hayley's parents, for blessing us with her presence for this dear, if short, time. We wouldn't trade it. Thank you, Hayley, for reminding us to keep our eyes focused on heaven and to spend our time on earth doing the things that really matter. Thank you for reminding the world that Jesus died so we could spend eternity together and that this isn't good-bye. We WILL see you again. For now, it is simply "see-ya-later alligator." And that assurance brings great comfort and peace to our broken hearts.

We will treasure our memories, Sweet Angel, until we meet again.

Tuesday, December 21, 2004

Memorial information still immediately below. I just couldn't let another moment go by without posting the poem our dear friend Jennifer Williamson wrote for Hayley. I hope it brings you as much joy as it has brought to us. Please pray for us tomorrow!

Hayley's Secret

A secret you held, so quiet and sweet,
It slipped out in smiles,
When the angels you did meet.

What did they whisper, in your tender ear?
Did they sing you a lullabye,
To ease all your fears?

Did they take you to see
Your rainbow’s hued light?
And promise home visits
Deep in the night?

Did you bounce on the clouds
Holding their hands?
Did you feel His love’s cushion
With each bounce’s land?

Did they tickle your cheeks
With wings soft and light?
Did you play Angel Dress Up
In pinks, oh so bright?

Did you ride “real” ponies
Like you did on The Floor?
Were you greeted by kitties,
As they played at God’s door?

Did the angels look like nurses
Who loved you through each day,
Did they cheer, “Go Hayley!"
To see you romp and play?

Tell us, Love’s angel,
The secret of your smile,
The one that grinned eternal hope,
And made us pause awhile.

Was it as simple as Mom’s gentle touch?
Or Daddy’s sure hand, that loved you so much?
Or was it to hear that you’ll see them again?
You’ll cuddle and giggle,
Through days without end.

Oh tell us, sweet darlin’
What made your smile so bright?
Oh yes, of course!
It was God’s loving light.

_____________________________________

MONDAY'S POST:
Our heartfelt thanks to each of you for your tireless support over the past 10 months. We will need you now more than ever as we face this indescribable loss. We rejoice knowing Hayley is running free in heaven, but miss her more than words can say.

Arrangements are as follows:

Private family burial, Wednesday morning

Celebration of Life:
Wednesday, December 22 at 11:00 a.m.
Perimeter Church
Main Auditorium
9500 Medlock Bridge Road
Duluth, GA 30097
678-405-2000

Reception immediately following in fellowship hall. All are invited.

It should be an inspiring celebration of Hayley's short, but amazing life. We'd love to see everyone that has been praying for our family.

In lieu of flowers, donations may be made to either of the following organizations. Our goal is to establish endowments through these organizations, which can help in the fight against cancer for years and years to come.

AFLAC Cancer Center (where Hayley received her care)
(Memo line: Hayley Thomson fund)
1687 Tullie Circle
Atlanta, GA 30329

or

CURESearch NCCF (National Childhood Cancer Foundation, focused on finding cures for difficult to treat cancers)
Att: Gift Processors
Hayley's Fund
P.O. Box 60012
Arcadia, CA 91066-6012

Sunday, December 19, 2004

Hayley had not smiled in nearly three weeks. Tonight, as she took her last breath, she smiled three times. She saw the angels. She saw heaven. She saw Jesus. What comfort!

At 6:52 p.m. this evening, Hayley Elizabeth Thomson stepped into eternity. She was resting with Mom near the fire, with Dad holding her hand. She never had one moment of discomfort and was surrounded by love.

It was beautiful. It was perfect. It was the saddest moment of our lives.

We'll update again as soon as arrangements are made.

Tonight, through Hayley, we have seen a glimpse of heaven. It was SO incredibly beautiful. Even more so now.

Goodnight, little angel. We miss you already.

Sunday, December 19, 2004

Our wonderful hospice nurse spent all night at our house last night, certain that it would be Hayley's last. But once again, God and Hayley had other plans. How we wish they would let us in on the secret! Although she's basically unconscious, Hayley's little heart and lungs are so incredibly strong and just won't quit. Medically, there is no way she can keep this up much longer. We pray for God's mercy and grace, for healing in heaven or on earth, and for peace, whatever comes next.

Still snuggling,
Dayna, Alan & especially Hayley

Saturday, December 18, 2004

Hayley's slipping downwards ever so gracefully. It appears her kidneys are failing along with other less obvious signs. (This has NOT affected her level of comfort one bit). We'll keep you posted.

FRIDAY'S UPDATE:
It's been two weeks now since we brought Hayley home on hospice (for the second time). No one involved in her care can believe she's still resting comfortably in our arms. As for us, we never could have guessed it would be this long or this hard. The agony is beyond any words. I can hardly even imagine that it is only 8 days until Christmas.

And we wonder, why, of all times of the year, did this have to happen now? Of course, there never would have been a good time - we know that. But our hospice chaplain said something that rang so true. She said that while in some ways, this time of year makes it harder, in other ways it is perfect. After all, it's on Christmas that Baby Jesus was born. The baby that would conquer death, so we might have eternal life in heaven. The reason that we need not fear Hayley's leaving earth (for Hayley's sake). So, really, if it has to happen, what better time of year could there be?

And, of course, should Hayley's miracle still be out there, the timing is all the better...

Before closing, I thought I would share the Christmas song resonating in our hearts today:

Are you far away from home
This dark and lonely night
Tell me what best would help
To ease your mind
Someone to give
Direction for this unfamiliar road
Or one who say, "Follow me and I will lead you home."

How beautiful
How precious
The Savior of old
To love so
Completely
The loneliest soul
How gently
How tenderly
He says to one and all
"Child you can follow Me and
I will lead you home
Trust Me and follow Me
And I will lead you home."

Be near me, Lord Jesus
I ask Thee to stay
Close by me forever
And love me I pray
Bless all the dear children
In Thy tender care
And take us to heaven
To live with Thee there
Take us to heaven
To live with Thee there

- From Christmas Lullaby (I Will Lead You Home) by Amy Grant

Thanks for your continued prayers.
Dayna, Alan & especially Hayley

Thursday, December 16, 2004

Hayley is a little sicker today than yesterday, but this little girl's heart just keeps on ticking surrounded by unfathomable love.

WEDNESDAY'S UPDATE:
Hayley's heartrate is down a bit, but still not to dangerous levels. She continues to amaze hospice and her doctors with her resiliance and comfort level. Thank you, Lord! That said, she's still a very weak and sick little girl. The days right now are long; the nights are even longer. And yet, we wouldn't trade a single one.

In the words of a dying man:
“The agony is great and yet I will stand it.
Had I not loved so very much, I would not hurt so much.
But goodness knows, I would not want
To diminish the precious love by one fraction.
I will hurt and I will be grateful for it.
For it bears witness to the depth of our meanings
And for that I will be eternally grateful.”

Thank you for your constant prayers and encouraging words.
Dayna, Alan & especially Hayley

Tuesday, December 14, 2004

Another quiet, cuddly day. Hayley continues to defy the odds. Please keep on praying!


MONDAY'S UPDATE:
It has been so hard to know what to write lately. There have been several times over the past few days, when we all thought Hayley only had hours left. But somehow, her little heart and lungs, which have been through way too much for this lifetime, pick back up and keep plugging right along. She astounds us.

We know that each day we have with Hayley is a precious gift. At the same time, each one is also heartbreaking. This disease has just ravaged her body. Every glance at her swollen belly and ever spreading cancer "spots" makes us loathe cancer to the depths of our being. She is so weak and tired it breaks our hearts.

And yet, Hayley is also SO comfortable and peaceful. We know your prayers have played a huge part in this blessing. Yes, morphine does wonders, but hospice tells us it's very unusual for a child to be THIS comfortable. We have not heard one single whimper of pain. We also feel blessed that Hayley's angelic little face has been completely spared of visible side effects.

Every now and then we even see a hint of Hayley's former self, grabbing for her stuffed dog or a Christmas tree ornament. Each time, we hold hope that maybe our earthly miracle is coming, but we also know her disease is progressing. It only takes one look to see that.

We've all told her it's ok to leave (even the cats said goodbye in their own adorable way). The rest is up to Hayley and God. We know whatever happens will be right. We are just ready to see Hayley's healing - whether in this life or the next.

Thanks for your continued prayers,
Dayna, Alan & especially Hayley

Sunday, December 12, 2004 8:19 PM CST

Hayley is one tough little girl...she is still holding on....

Saturday, December 11, 2004

Hayley and Mom are by the fireplace again tonight on this cold December evening. She is still hanging on with indescribable grace and peace, but we have all encouraged her that it is ok to let go and meet her Heavenly Father. Her heart rate and respiration rates are falling slowly...with Hayley there is no telling what this means :). We love you all. Keep on praying.

Alan, Dayna & especially Hayley

ps - One of "Hayley's rainbows" made the cover of the Atlanta paper today. When was the last time a rainbow made front-page news? Awesome.

FRIDAY'S UPDATE:
This afternoon, following the rain storm, we saw the most incredible double rainbow right over our cul-de-sac. The fed-ex man, who arrived at the same time, declared it the most awesome sight he had ever seen. What a visible reminder from God that He will carry us all through this storm.

Hayley is still fighting with her usual grace and strength...you'd never know it, though. She's as peaceful as can be. (Hospice tell us they've actually never before seen someone SO peaceful). She looks absolutely beautiful.

Keep on praying,
Dayna, Alan & especially Hayley

Thursday, December 9, 2004

Hayley is still holding her own, but we notice subtle changes every day in her breathing, fluid retention, and alertness etc. She remains peaceful as can be, constantly nestled up against one of the many who love her dearly.

With Hayley sleeping 23 1/2 out of 24 hours, we've mostly been listening to her favorite music, reading books and just talking to her. I wanted to share an excerpt from one of the books we've been reading to Hayley, "Just In Case You Ever Wonder" by Max Lucado (you may have already seen a portion in the guestbook).

"Most of all, I'll teach you about God.
He loves you.
He protects you.
He and His angels always watch over you.

And God wants me to make sure you know
about heaven. It's a wonderful place.
There are no tears there.
No monsters.
No mean people.

You never have to say 'goodbye,'
or 'good night,'
or 'I'm hungry.'
You never get cold or sick or afraid.

In heaven you are so close to God that He will
hug you, just like I hug you. It's going to be
wonderful. I will be there, too. I promise.
We will be there together, forever.
Remember that...
just in case you ever wonder."

It's a struggle to get through without tears, but what an awesome message. Wishing you snuggles and hugs of your own tonight. Please keep praying,
Dayna, Alan & especially Hayley

ps - I just learned that one of the first batches of "Faces of Childhood Cancer" calendars had a printing problem. If you were quick to order and find yours is one of these (you'll know), you can contact cafepress and have the calendar replaced. Sorry for the inconvenience, but the new ones should be as beautiful as promised!

Thursday, December 9, 2004

Dad doing this update at 5:00 p.m.: Hayley and Mommy are downstairs snuggled up by the fire place. Hayley continues to sleep virtually the entire day. She woke up this morning having a more difficult time breathing, but she continues to hang in there like the trooper she has always been. Thank you all for your continued prayers and support.

WEDNESDAY UPDATE:
It was a long night. Hayley's respirations are starting to change, generally the first sign of deterioration. She is still stable and completely comfortable. We continue to be thankful for that enormous blessing, but hospice tells us we are looking at days; not weeks. That is SO hard to hear. We know this is no way to live, but I guess we'll never truly be ready to let her go. Not because we fear for Hayley - we know she'll be with Jesus laughing and singing in glorious heaven. But this is our little girl we're talking about. And we can't even begin to imagine life without her on earth.

From "Why?" by Anne Lotz:

When there are no answers to your questions...
Trust Him when you don't understand.
Trust His heart.
Trust His purpose.
Trust Him when it is your heart that's broken.
Trust His goodness.
Trust Him beyond the grave.
Trust Him to know best.
Trust His plan to be bigger than yours.
Trust Him to keep His Word.
Trust Him to be on time.
Trust Him to be enough.
Trust Him to set you free.
Trust Him - and Him alone!
The times when you and I can't trace His hand of purpose, we must trust His heart of love.

Please keep praying,
Dayna, Alan & especially Hayley

Monday, December 6, 2004

We made the trek down to Scottish Rite to get platelets this morning, and they do seem to be helping to control Hayley's internal bleeding. She continues to sleep about 22 out of 24 hours a day, but is completely stable and resting comfortably. The bad news of the day? Hayley's blood is now 98 percent cancer, and her white cells are producing out of control - they are up to 70,000 (normal is 6-16,000). This was expected, but always tough to see on paper.

Thanks to all of you who forwarded information on the experimental Bristol Myers drug for leukemia, which seems to be having great success. Unfortunately, it is targeted at a different type of leukemia (CML), that is much slower growing. We appreciate you caring enough to forward the information. One day, we do believe there will be a pill to cure ALL types of leukemia. I hope I'm lucky enough to see that day.

We head back tomorrow for MORE platelets and blood work. Please keep praying for Hayley's miracle and for our sweet girl's comfort most of all.

Love,
Dayna, Alan & especially Hayley


SUNDAY'S UPDATE:
We’ve spent another quiet day at home with Hayley. She is running a low-grade fever and sleeping most of the time now – but she appears to be completely comfortable. We are so unbelievably thankful for that. The only thing causing her even minor annoyance is occasional vomiting (with blood). This is most likely due to her stomach nodules and we are hoping that platelets tomorrow will ease the problem. When Hayley's awake, she’s alert and still quick to let you know exactly what she wants. And as usual, she constantly has something in both hands – whether awake or asleep. As for us, we are doing as well as possible. We struggle with our emotions throughout the day. Now more than ever, we don’t understand why any child has to have cancer. We certainly don’t understand why our daughter has to have cancer and why it has to be such a vicious cancer at that.

And we probably won’t ever understand in this lifetime.

BUT we will on the other side of eternity, of that we’re sure. Someone reminded us that if God was small enough for us to understand him, he wouldn’t be big enough to save us.

Please keep on praying. We are so grateful for each and every prayer and heartfelt message sent our way. They help carry us through.
Love,
Dayna, Alan & especially Hayley

PS – If you’re in need of a calendar for 2005, Faces of Childhood Cancer calendars are now available at www.cafepress.com/raiseawareness. You might recognize Miss February! A compassionate woman in Arizona worked hard to make this beautiful tribute to some incredible children. Proceeds are going to Taylor's Angels, and will be used to support, give comfort and ease the burden for parents coping with the challenges of caring for children with cancer.

Saturday, December 4, 2004

Just a quick note to let you know we are settled in at home, and AT LAST, the right mix of medicines seems to be keeping Hayley pretty comfortable. Thank you, Lord! We are pretty much spending the days snuggling close and the nights snuggling even closer. Only God knows how long we have left, but probably not long. I find myself trying to memorize every curve of her face and the sound of her voice. She is such a precious gift to us, and our hearts are breaking. We are counting on God's promises to see us through.

Please keep praying,
Dayna, Alan & especially Hayley



THURSDAY'S UPDATE:
We've spent most of the day cuddling with Hayley (a.k.a. snuggle bunny!). She is most comfortable and least itchy when she's sleeping so she's been doing quite a bit of that. Her rash is slightly better, but there's a long way to go before it's "gone." A substantial boost to her morphine pump seems to have helped that and any other pain she may be having. Her cancer now comprises 91 percent of her peripheral blood. Medically, they tell us she has days; possibly weeks; but nothing more. We will head home tomorrow morning and manage things from there with hospice. If she can't chase the cats, at least she can see them! We feel blessed that she felt good enough this afternoon to sit up, honk a few noses and watch Barney. I know that's not much, but compared to yesterday, it's an improvement!

Emotionally, we are all over the map. Angry, confused, sad, desperate for Hayley's comfort, but mostly, totally in love with our little girl and unable to imagine life without her. The pain is beyond description. We thank God, that at the very least, we have eternity to look forward to with her. And truly, if God needs a new angel, I have to admit that Hayley's the perfect choice. I mean, have you seen her cheeks?!? :)

Please remember - it's never too late for a miracle. That's exactly why it's a miracle - because nothing else has worked. Thank you for your continued and fervent prayers.
Dayna, Alan & especially Hayley

Wednesday, December 1, 2004

I fear this is going to be a "downer," to read, but here goes...

Unfortunately, the GVHD rash is still causing extreme discomfort for Hayley. Hayley's body is at war, and one place it's showing up is her skin. This is no ordinary rash. She claws at herself; writhes and twists to scratch unreachable parts; asks us to pick her up, but screams when we touch her. It is AWFUL. She has been started back on both cyclosporin and steroids to treat the underlying problem, as well as numerous pain/itch medicines to treat the symptoms. This SHOULD eventually get things under control. Please, please keep praying that it does. In 10 months of intense treatment, this is the worst thing I've seen. We'll be inpatient through Thursday now - so we can try and get a better handle on it.

So, the downside of starting her back on GVHD medicines is simply that Hayley will likely lose any graft versus leukemia effect she may have had (which, lately, has not been much) In all the rush of other things, we've neglected to report that her peripheral blood blasts are now in the 60 percent range. They seem to be holding steady there, but honestly, after this rash, we don't fear those numbers so much. Our primary goal is clearing up the GVHD and keeping sweet Hayley comfortable and happy. We'll handle the rest as it comes. And WHEN we get the rash under control, we'll explore other possible chemo options.

Please keep praying for comfort, strength and, of course, for Hayley's miracle. Your support means so very much to us. We hope to have better news to report tomorrow!!

Dayna, Alan & especially Hayley

________________________________
TUESDAY'S UPDATE:
Hayley is cuddling up with Mommy at Scottish Rite as I write this update. On the plus side for the day, we were released from ICU late this afternoon, and moved into our home away from home for 2004, the AFLAC Cancer Center. That said, it was another long day.

The struggle for the day was to find the right mix of medicines to make Hayley comfortable. She has a rash that covers most of her body and itches terribly. The rash has been attributed to GVHD (a side effect of the transplant). It has been excruciating for Hayley to endure and for us to watch. Unfortunately, it is a deep itch so topical measures don't really seem to help too much. The rash causes such discomfort that it has been difficult for Hayley to sleep over the past two days, so the poor thing is just exhuasted. And to top it off, she has been on pretty hefty doses of steroids to mitigate the rash, which has flared her "alter-ego".

By days end it appeared that we have a pretty good pain / sleep management strategy in place that should help Hayley cope in the coming days. We are starting a couple of medications that should help clear up the rash and other GVHD issues pretty quickly.

Tonight and tomorrow we would ask your prayers for comfort and peace for Hayley -- and the rest of our family -- wisdom for our doctors as they gameplan for the next couple of weeks, and for that ever so elusive miracle of total healing.

We appreciate every one of you!

Alan, Dayna & especially Hayley

Monday November 29, 2004

Just a quick note to let you know that Hayley's blood pressure/heart rate are stablizing, and they've almost weaned her off the dopamine. She is still running a low-grade fever, but the three massive antibiotics she's on appear to be doing the trick.

It's been a very tiring day. Honestly, when we got to the hospital this morning, we thought today might be one of Hayley's last. She looked really, really bad and the doctors began discussions of what rescue measures we did/didn't want to pursue. An absolutely heartbreaking discussion. But thanks be to God for a happy ending today. When Hayley sat up hours later and said, "dog," reaching for her stuffed puppy, we knew she was going to be ok.

We expect to be inpatient through at least Wednesday, but will keep you posted along the way.

Keep on praying!
Dayna, Alan & especially Hayley
______________________
DAD CHECKING IN -- Well, Hayley keeps things interesting for us. I am writing this update from the computer outside of the Scottish Rite ICU. Hayley spiked a fever last night and she did not respond very well to Tylenol, so we brought her into the E.R. for antibiotics, etc. In addition to the fever, her heartrate was elevated, her blood pressure was significantly lower than where it was just a couple of days ago, and her white blood cells have "taken off" over the weekend and are about 18 times where they were on Friday. All of these items signal infection of some sort. Right now we are trying to get her blood pressure under control using a drug that can only be given through the ICU (Dopamine). From a first report from the Doc it is working well. The trick will be to treat the underlying infection to get rid of the nasty symptoms. Once her blood pressure can remain stable without drug assistance we should be able to check out of ICU. Please pray for wisdom for our family and Hayley's caretakers and for Hayley's strength to ward off this infection.

SUNDAY UPDATE:
It's been hard to know what to write this weekend. Hayley still looks great, but she's definitely slowing down. She's starting to take multiple naps a day and is getting restless at night. She is not in apparent pain (thanks in part to our home pharmacy), which is such a blessing. Given her lack of energy, we won't be at all surprised to find her cancer on the move tomorrow. But, we've been wrong before; perhaps we will be again. For once, I would love nothing more than to be wrong!!

We've been filling the awake moments with fun - more visits to the horse farm; lots of art and decorating the Christmas tree with balls galore! And of course, lots of wonderful snuggle time.

A friend recently sent a quote that fairly well sums up our days - which I wouldn't call happy, but certainly filled with joy.

"I had thought joy to be rather synonymous with happiness, but it seems now to be far less vulnerable than happiness....Joy seems to be a function of the willingness to accept the whole, and to show up and meet with whatever is there. It has a kind of invincibility that attachment to any particular outcome would deny us. Rather than the warrior who fights toward a specific outcome and therefore is haunted by the specter of failure and disappointment, it is the lover content with the opportunity to love despite the possibility of loss, the player for whom playing has become more important than winning or losing." - Rachel Naomi Remen

And so, we are grateful for each joy-filled day God gives us with our little girl. We won't pretend to understand why this is happening; we don't. But we do know that God loves Hayley very, very much. Please keep praying for Hayley's miracle; for her comfort; for our strength.

Dayna, Alan & especially Hayley

Friday, November 26, 2004

*New photos 11/25*

Sorry for the late update, but we JUST returned from getting platelets at the hospital. Everything went smoothly and we got to have Nurse Joy take care of us again, which is always a treat! The bad news is that Hayley's blasts doubled from 8 to 16 percent. We're trying not to place too much emphasis on the numbers right now until we see what they do on Monday and whether the upward trend is really that dramatic(Obviously, very hard to do, but we're trying!). Please keep praying for Hayley's miracle and declining numbers!! In the meantime, we'll be living each day to the fullest. Today, that meant visiting the nearby horse farm, where the horses "performed" by coming right up to Hayley. She loved it! You can just imagine the "neighs," I know! (Don't worry docs, she didn't touch!).

Thank you for your tireless support. Keep on praying!

Dayna, Alan & especially Hayley

_____________________________________

THURSDAY'S UPDATE:

Happy Thanksgiving!! Nana, Grandpa, Grammie & Hayley's Great Aunt Patricia were all here for the big day. Hayley's steroids are kicking in, but she managed to mellow out just in time for a big Thanksgiving feast. Sweet potatoes were a hit - with both Hayley and her "dogs," and she served up the tea just in time for dessert. Other than the crankiness, she seems to feel fine - we head in tomorrow for platelets and blood counts. Keep up those prayers for zero!

In spite of Hayley's string of bad news, we find we're more aware of our blessings this year than any other year. So, what are we thankful for?

We're thankful for every good day with Hayley; that she has felt so good through her treatment and continues to astonish us with her resilience in spite of the cancer.

We're thankful for every word she mis-pronounces, every laugh and giggle she releases, and every smile and kiss she gives away.

We're thankful for dogs, cats, stickers, circles, Barney, Elmo, paint, crayons, playdoh and every other little thing that brings a smile to her face.

We're thankful for a God who walks beside us in suffering and gives us the strength to endure.

We're thankful for grandparents, who have sacrificed much of their own lives to be with us nearly every day (of our 188) in the hospital this year. We could not imagine doing this without them.

We're thankful to live in the great state of Georgia, where children are eligible for Medicaid (Georgia is one of only 16 states that have this program, which relieves much of the financial burden). And more generally, we're grateful to live in the USA, where excellent medical care is available.

We're thankful for amazing doctors and nurses, who have gone out of their way time and again to make our little girl happy and ensure she receives the very best care.

We're thankful for blood and platelet donors, who have saved Hayley's life nearly 60 times this year.

We're thankful for friends, family and strangers alike who have taken such amazing physical and emotional care of us over the past 9 months. You have blessed us in endless ways, and we are so grateful.

And, I can't close without saying that we're SO thankful that Hayley's decadron ends Saturday!! (ha, ha).

Seriously, we have a lot to be thankful for. There's only one thing missing from the list, and we're hoping to add it next year - Hayley's CURE!! Please keep praying to that end.
Hoping many blessings are yours this Thanksgiving,

Dayna, Alan & especially Hayley

Wednesday, November 24, 2004

We're still at the clinic waiting on platelets, but wanted to quickly update with Hayley's cancer blast count. Today, it was 8! Not zero, but down from 10, which means it's still going in the right direction. Please keep praying that this trend continues and that we see her cancer cells at zero soon! I guess some miracles just take a little time!!

A second prayer request is that the maintenance chemo Hayley's taking doesn't kill too many of her good cells. Her overall white count was down significantly today. If it drops much more, we'll have to halt the chemo, for fear of destroying her donor graft. In other words, we want the bad cells to go, but we need the good cells to stay!

We will head inpatient at Scottish Rite for platelets Friday (the clinic is closed), but we'll be in and out in the same day. We'll also draw labs again - here's hoping for zero!

During this holiday season, the need for platelets will be especially high and it's a great time to give. Thanks so much to each of you who have already donated. I will have to count them up, but I believe Hayley is approaching her 60th transfusion!

On this Thanksgiving Eve, we hope each of you has a wonderful day tomorrow. We're betting you'll be all the more aware of your blessings this year. We certainly are. Truly, in spite of it all, our blessings are many - AND at the very, very top of the list is another great day with our daughter.

Keep on praying!
Dayna, Alan & especially Hayley

Tuesday, November 23, 2004

All is still well at home. Hayley is feeling great, even completely off pain medicine. She is just so cute zooming around the house from one thing to the next. She's like a tornado! Atlanta Hospice came out today (we will be under their 'palative care' program, where you can still do treatment). It was odd to have them there. Actually, it was completely surreal given how good Hayley feels. But our primary nurse, Candace, seems great. She was quick to tell me they've already graduated three alumni this year and that she would never give up either! We head back to the clinic tomorrow to check counts and probably for transfusions. Please keep praying for ZERO blasts. Wouldn't that knock the doctors socks off!?!?! Our love and thanks to each of you!
Dayna, Alan & especially Hayley

_______________________________

Monday's Update:
God is truly able to do immeausurably more than all we ask or imagine!! He heard all our prayers last night and answered in a BIG way today.

Now that I have you in complete suspense, you may remember we were expecting Hayley's blasts to be in the 70 percent range today. Imagine our surprise when her blasts came back at TEN percent. TEN. As in less than half of what they were on Saturday - with NO treatment. No, it's not zero. But it was WAY DOWN, which just shouldn't happen. But nothing's impossible for God, remember?

The "medical" explanation of this change is that Hayley has a mild case of GVHD (red rash all over her body and a case of the "runs," but nothing causing her serious discomfort right now). Not normally good news, but sweet music to our ears!! Hayley's GVHD does seem to be producing an anti-leukemia effect. In other words, the donor cells are killing off some of the cancer blasts. This is so incredibly awesome!!

Of course, GVHD is no walk in the park. Although Hayley's case is considered mild right now, they are going to treat her with a small dose of decadron to keep the GVHD from getting out of control, but still allow it to do its job. (Ok - so we weren't too thrilled about the steroid, but given all the good news, we can handle it!)

The second piece of good news is that Hayley's GOOD white cells were high enough today that the doctors are starting a "light" maintenance chemo to help out. She is still fairly transfusion dependent (received platelets today), but they are ok with that given her other good counts. So, two HUGE answers to prayer. We are ECSTATIC at the news. Thank you, thank you, Jesus!

Now, I don't mean to minimize the severity of the situation. Hayley's was the fastest donor bmt relapse EVER at Egleston. All the doctors have said her leukemia is one of the most aggressive and sneaky they've ever seen. We are a long, long way from out of the woods. And today, we had the very humbling experience of being officially transitioned to hospice (I hate that word!). Fortunately, we found a hospice company that will allow us to do both maintenance chemo AND transfusions. The main benefit of hospice is that it will allow us to do more care at home. If Hayley gets a fever, we can attempt to treat with IV antibiotics at home OR we can go to the hospital. It gives us added flexibility. AND if the worst happens, we'll be positioned to manage it. Oh, and by the way, there IS such a thing as hospice alumni!! And we're fully intending for Hayley to be its newest member.

When we asked the doctors Thursday if GVHD had ever killed THIS much cancer, they couldn't cite an example. Not one. Here's believing that the next time a family asks that question, they're going to respond with an emphatic "YES!!"

Our hope has indeed been restored. So, keep praying. Pray for ZERO cancer cells. And keep believing. NEVER give up! Our miracle is on its way. Now, more than ever, we're back in "believal"!!!!

Love,
Dayna, Alan & ESPECIALLY Hayley

PS - I'm posting Jack's mom's description of Hayley's vigil. Jen just has a way with words! Keep sending those amazing prayers heavenward!

From CampJack's site:
Day 55: LIVING THE CURE FOREVER!!!
A Re-Cap of HAYLEY’S HOPE
___________________

Tonight, I was blessed to be part of a miracle…
So were you.

In a packed conference room, family and friends of the Thompson’s crowded in to lift Hayley in prayer and music. After a long drive in the pouring rain, they walked the longer corridor to room B-52 for the little girl they love so profoundly. To see each person come down the hall, I instantly knew they were with us --- it was written all over their faces.

Some wore jeans, some wore sweats, some even wore baseball caps on this otherwise dreary Sunday. But, none of that mattered in a room undistinguishable from any conference room you’d find at a Holiday Inn. It was a room full of hope and miracles. Smiles, and the soulful spirit that filled it, were all the décor needed.

Hayley’s special candle sat on an overhead projector cart in the front of the room. Holly, one of the many wonderful people who pulled together for the event, decorated it with small pink flowers (knowing Hayley loves pink), tulle, and a tiny Live Strong bracelet. It was perfectly simple and pure, just like Hayley.

And then we began. Beautiful music, words spoken as only a close friend could do, the most unforgettable AMAZING GRACE you’ve ever heard, and words from Alan himself…

Now, I’ve always been unbelievably impressed with Alan. He always, I mean ALWAYS has a smile on his face, even during the most heartbreaking of times. Tonight was no exception, in spite of tears. And in the most humble way imaginable, he reaffirmed the image of hope he and Dayna so faithfully cling to during this time --- and it’s all contained in a metaphorical cup.

The “cup” he told us, contains the hope he and Dayna hold dearly for Hayley. However, since diagnosis, that cup has had tiny holes pierced through it. Each fever, each setback drilled another hole, leaking the hope they hold so dear. Last week, that cup suffered the biggest hole yet, leaving them to wonder how they’d ever fill it back up.

How could any parent refill their cup of hope after such devastating news?

Then, he looked into the eyes of all who crowded that space in time tonight, and found the answer… “We’ll fill the cup” he said, “with the love we feel right here in this room”.

In that room, in front of their house, across the nation, across the Atlantic, and in their guestbook ---- you all have helped fill their cup of hope beyond belief. Thank you for showing this amazing family how your love for Hayley could make a cup of hope spillith over.

Sunday, November 21, 2004

What a beautiful night! In spite of all the rain and dreariness in Atlanta, we know heaven was ablaze with light and prayers for Hayley tonight. To all of you - from the packed crowd at Egleston to the group in our cul-de-sac, from families in New York and California to Texas and Canada, thank you for lighting the night for Hayley! The vigil at Egleston was beautiful (I got detailed reports from Dad, Nana & Grandpa), full of soulful music, moving words and heartfelt prayer. And what a mix of people: neighbors, tennis friends, co-workers, Allie's Angels, fellow cancer parents, nurses, church friends and strangers alike. How many lives this little girl touches astounds me every day. Grammie & I said our own private prayer with Hayley, as she looked out the window to see neighbors with candles in our cul-de-sac. She had big grins and waves for everyone out there. And I know so many of our other prayer warriors participated from afar. As Alan said in person, you fill our cup of hope, once again, with your love and prayers. Special thanks and hugs to everyone involved with the planning of Hayley's Hope!

As for Princess Hayley herself, she had another great day. She did her usual favorites - chasing the cats, painting, playing in the water and watching Barney. We've got quite the art studio set up at home now. Yes, it's messy. Yes, it keeps us on our toes to let her loose with the paints. But oh how it's worth it.

Our medical routine at home is pretty easy. An IV antibiotic and steroid in the a.m., two oral meds and IV fluids at night. Not bad when you consider all she was on in the hospital. I do have new appreciation for all our nurses and how tough it can be to "spike" a bag.

Tomorrow we report to Scottish Rite clinic for bloodwork and possible transfusions. Please keep praying for Hayley's miracle and that the blasts stay in check while her platelets and hemoglobin begin holding their own. We're guessing with two days growth behind them, the blasts will be in the 70 percent range. But who knows...

Just yesterday, a story was sent to us about a child who relapsed with blasts following transplant. Her parents were sent home to plan her funeral. And you know what? She started getting better. They did another test and, surprise, NO cancer. Anything can happen.

And so, we won't predict the future. We're just thanking God for another great day - one filled with light and prayer, family and friends, painting and dancing, and of course...CATS!

Keep on praying!
Dayna, Alan & especially Hayley

Saturday, November 20, 2004 DAY 16

Greetings from home! Yes, a day early, we are home sweet home. I'll start with the bad and end with the good...

So, the bad. We're home early because Hayley's blasts shot up to 43 percent today. Her cancer appears to be growing aggressively and we don't know how many good days she has left. Maybe thousands, but possibly very few. We want every great day at home we can squeeze in, and so we packed right up. One platelet and blood transfusion later, we headed out exactly 28 days after our arrival. One of our shortest stays ever and it was so very painful to leave. It was probably the most defeated we have ever felt.

And yet, I have to extend a huge thank you to the Egleston staff. In our rush to leave, there was no time for thank you cards and proper goodbyes, but what an amazing group of people you are. So compassionate. So giving. We were not "your own" as native Scottish Riters, but yet, you embraced us with love and devotion the second we walked on that floor. You didn't just treat, but loved our little girl, and for that, we are forever grateful. Whenever you see a "kircle," we know you'll think of Hayley!

So, what next? The plan from here is this: Monday we report to Scottish Rite clinic to check blood counts and for possible transfusions. We will probably check in every other day for an indefinite amount of time. Our hope is that we can start an oral maintenance chemo as soon as possible. Untreated, the doctors tell us that Hayley has a few weeks at most. Our ability to treat depends on her ability to hold her platelets/blood (not requiring such frequent transfusions). Unfortunately, most kids don't "hold" their cells this soon after transplant, AND the cancer is going to start crowding other cells out. I know this is confusing, but you can see it's a race against time. We need that miracle!

Ok - so the good news...Hayley is feeling awesome!! And guess what she did when she walked in the door? Yep, you got it - She chased the cats up the stairs, down the stairs, under the bed and all through the house with the biggest grin on her face. She raced from toy to toy with sheer glee. HOW can this child's blood be half filled with cancer?? It just can't be. Her joyful spirit is a miracle in and of itself.

We are so thankful for each one of you and the ways you encourage us. Special thanks to Jen, Steph, Jesee, Kirk, Kathy (& everyone I don't know about) for making the vigil happen tomorrow night and to ALL of you for praying for our miracle. I will have to be home with Hayley, who still can't be around people, but Dad will be there! What an awesome tribute.

Know that while our hearts are breaking, they are so very full of love. Whether Hayley has a week or 80 years, we will love her with all of our might for as long as we can. Our thanks to God for every good day. May they be too numerous to count.

Keep on praying!
Dayna, Alan & especially Hayley

"I will remember the deeds of the Lord,
yes, I will remember your miracles of long ago.
I will meditate on all your mighty works
and consider all your mighty deeds.
Your ways, O God are holy.
What god is so great as our God?
You are the God who performs miracles;
You display your power among the peoples."
Psalm 77:11-14

Friday, November 19, 2004 DAY 15

**** Some dear friends are organizing a candlelight vigil/life celebration for Hayley this Sunday night at 5 p.m. Weather permitting, it will be held at the Egleston Garden (rain plan - indoor chapel) You're invited to come say a prayer for Hayley's miracle, light a candle and celebrate her amazing spirit. Full details will be posted on Jack W.'s site (link above) by tomorrow morning. BYOC! (Bring your own candle, and maybe a coffee filter for the wax!!) What awesome friends we have! *******

________________

First off, a huge thank you to each of you. I can't tell you how your words comfort and inspire us; how your prayers give us strength. We read your notes and e-mails often throughout the day. We cry a little, smile a lot, and cry some more.

We have a clearer picture of things today and wanted to update. But first, for all of you wanting to know about Hayley, be comforted by this: This child does NOT know she is sick. STILL. Her body is 1/4 filled with cancer, and yet she danced for her nurse last night and planted a kiss squarely on her cheek. She laughed through her laps again today, painted 3 masterpieces, picked out her cat pants to wear and has been about as normal as normal can be. We feel so incredibly blessed that she feels this good - not your typical post-transplant scenerio - even without cancer raging in your body. Praise the Lord! We are thankful for every single good day.

Medically, her blood results today were no better, but no worse - and that is also a good thing. The cancer isn't spiraling out of control yet. We ask your prayers for a miracle and for strength, but very specifically that her blasts stay controllable so that we have options.

We will be discharged Sunday to home (on some medicines, but off most) and will report back to the Scotish Rite clinic on Monday for decision making and probably transfusions.

We are amazed time and again by the care given to us by the doctors and staff here, who are so full of compassion. And our beloved Dr. Lew, who on the phone last night actually said, "I know this sounds crazy, but don't give up. The chance may be less than 1 percent, but there's always hope." Now, I know that's his heart talking more than his head, but for an oncology doctor who sees what he sees every day to still be hopeful blows me away. There IS still hope, friends. It ain't over til it's over.

Keep on praying!
Dayna, Alan & especially Hayley

_______________________________________

Thursday's Update, Day 14

It was five long, agonizing, gut-wrenching hours waiting for the blood results. And honestly, after hearing them, we could have happily waited a lifetime longer. Now, quite frankly, we know too much.

A mere 14 days after transplant, Hayley's peripheral blood has 23 percent blasts, and the test has shown that they are indeed cancer cells. In spite of the strongest conditioning regimen they could give, Hayley's cancer survived.

As most of you know, there is next to nothing that can be done medically at this point. She's not eligible for another transplant for 6 months, her organs are too taxed for heavy duty chemo, which probably would have no effect anyway. The ONE possibility is this: They have cut Hayley's cyclosporin and steroids (she will be off them completely by tomorrow) in the hopes of producing a GVHD effect, and a related graft-versus-leukemia effect. Theoretically, there is a chance that the 77 percent "graft" could kill the cancer, but with 23 perecent cancer, it is highly unlikely. We will certainly pray and hope for that, of course, but the doctors could not cite one single instance where that had ever worked. What it might realistically do, is slow down the blast growth.

So, where does that leave us? We need Hayley to at least mostly recover from the transplant, and then we will be transfered back to Dr. Lew's care. We hope to go home by Thanksgiving. At that point, based on her count recovery, we will have to decide whether it makes sense to try some sort of maintenance chemo or go straight to hospice. Comfort and quality of life will be our primary focus. But either way, Hayley is unlikely to live until her second birthday.

Let me be clear - we are not doubting that God could still work a miracle. We know it's possible. We are just no longer EXPECTING it, and have to plan accordingly. We welcome your prayers for a miracle and add them to our own.

In spite of this absolutely horrific news, Alan and I have seen God's faithfulness over the past 9 months. Hayley has rarely had "bad" days. Just today, she LAUGHED riotously through 8 laps. He has given us hope at every turn to keep us going. I have often been told that if God does not spare you from suffering, then He gives you unfailing strength to get through it. We believe that to be true. We need it to be true now more than ever. We don't know how to do this. We don't want to do this.

Please pray for a miracle. Pray for wisdom, for Hayley's comfort, for our strength. We are crushed beyond any possible words.

__________________________________

11:00 a.m.
URGENT PRAYER REQUEST:

Hayley's white count is up to .72 today, which is great. I should be shouting from the rooftops that she's engrafting, but we just received some distressing news. Because Hayley's counts are now high enough, they can run a differential, which shows what TYPE of cells are growing (neutrophils, lymphocytes, etc). Hayley's differential today showed 12 percent blasts (abnormal cells). This CAN be caused by the GCSF stimulant, but given Hayley's history the doctors are very concerned that these are leukemic blasts. Obviously, we are devastated by this news. Forget Day 30. They will be running a detailed blood panel TODAY to determine what type of blasts these are. There is hope that it's GCSF, but it's not a common occurence. I don't think I have to spell out what this means for Hayley if these are leukemic blasts. We should have the results by late afternoon.

Please stop whatever you're doing and PRAY HARD.

Wednesday, November 17, 2004 DAY 13

Hayley's white count doubled today, up to .52!! One more day will make engraftment official! The doctors were all smiles at her numbers and so were we!

Hayley's still achy from the cell growth, but otherwise is feeling good. She took a few sips of juice today (the first time in two weeks) so we know her mouth sores are on the mend. They will begin cutting back the morphine and IV nutrition this week - our first hurdles to getting discharged! We're guessing we'll be able to move to a nearby hotel by December 1 if all continues on course.

The only other news of the day was an IVIG infusion (viral antibodies) as well as a platelet tranfusion (no wait!). Although, Hayley's white count has started to recover, she still isn't producing other cells on her own, and that is expected. White cells are always the first to recover, followed by red cells and then platelets. The doctors say it can take MONTHS for transplant patients to begin producing red cells and platelets, but we're betting on a week or two. Thank you AGAIN to everyone donating!

So, all wonderful news. We feel like we're almost through one major hurdle. But truth be told, the next month will likely be the most stressful for our family. We'll find out what percentage of Hayley's cells are donor and we have the risk of GVHD to contend with. But more than any of that, THIS next month is the time when Hayley relapses. Her last two relapses occured within two-three weeks of count recovery. Truly, truly, we believe that she is now cancer free. But I'd be lying if I didn't say we've thought that before, so please keep up those prayers that every last cancer cell has been destroyed and that the donor cells will take over. We'll have our first look at her marrow, spinal fluid and stomach around Day 30. But, of course we've got Days 14 through 29 to get through first!

Our prayer from Hayley's diagnosis has been that she would be healed, and God would be glorified in the process. Through each relapse, we have prayed that her story would become an inspiration for other families handed lousy statistics. And on Day 13, we believe more than ever, that those prayers are being answered.

Keep on praying!
Dayna, Alan & especially Hayley

Tuesday, November 16, 2004 DAY 12

Drum roll for Hayley's white count today... .26!! Hayley is almost definitely engrafting. It only takes 3 days headed upwards to make it official, so Dad's in excellent shape for Day 15! We are SO excited and thanking God for what appears to be an extremely quick recovery for a cord transplant.

The true test, of course, will be WHOSE cells have engrafted, which won't be tested until Day 30. But we are taking comfort in the fact that the cells are growing back quickly. Hayley has NEVER recovered her own counts quickly -hence our average 30 day admissions. One of the doctors joked today that transplant may turn out to be our shortest admission. How nuts is that?!?

In spite of all that good news, Hayley's had a little bit of a rough day. She got sick to her stomach from all the mucus sitting there overnight, and she has some achy bone pain (from the growing cells). But, in the cancer world, that is considered "good pain." We're affectionately calling Hayley our litte Buddha right now. She has gained 3 pounds this week, due to fluid retention from the steroids, and is carrying it all in her belly and cheeks. Add the bald head, and you get the picture! They've started her on lasix to help drain some of the fluid. (For the medical among you, her liver is small and her bilirubin good, so the weight gain is not VOD related - PHEW!).

Thank you for your constant prayers. There is never a day we don't feel supported and encouraged by them. Please keep praying for "official" donor engraftment!! As Hayley would say, "more, more, more!!"

Love,
Dayna, Alan & especially Hayley

Monday, November 15, 2004 DAY 11

"We must accept finite disappointment, but never lose infinite hope" - Martin Luther King

That's my subtle (ha, ha) way of saying that Hayley's white count dipped back down to .11 today. But in spite of the numbers, the doctors are still optimistic that she may be engrafting. Her mouth sores seem to be improving, so even though the white cells aren't showing up on paper, they believe they're in action somewhere in her body!

More importantly, Hayley's spirits seem much improved from yesterday - she's even been out for laps today.

The only thing that actually seems worse today is her voice - she sounds kind of like a barking seal at good moments; complete laryngitis at others. But, believe me, we still know exactly what she wants! :)

All in all, she's doing wonderfully for Day 11. Thanks for your powerful prayers, which are playing such a big part in her recovery. Our focus remains DONOR ENGRAFTMENT!! Also, please remember our hall mate, Jeremy, an 8-year old boy, who was transplanted the day after Hayley. He has been running 104/105 fevers for the past few days and feeling generally crummy. He has the sweetest family, and we want him feeling good too!!

And lastly, a big thank you to Mandy & Holly (some of our awesome nurses at SR) for stopping by to visit. It was great to see your smiling faces. Hugs to everyone over there.

Keep on praying!!

Dayna, Alan & especially Hayley

Sunday, November 14, 2004 DAY 10

Well, it's too early to get excited, but Hayley had a white count of .16 today, which again signifies the possible beginnings of donor engraftment!! It will be another few days before we can say anything for sure, but please keep praying that Hayley's white count goes up, up, up with ALL donor cells.

Hayley definitely needs prayers for comfort, too. For the first time in a long while, she didn't want to get out of bed this morning, and it takes a lot to keep this 21-month-old down! Plus, she just looks miserable. Her head-to-toe rash is getting worse, and her cheeks are so rashy, they're purple. She's also starting to get the swollen steroid look AND the steroid personality. YIKES!! They start weaning off the steroids around Day 19, and we'll be eagerly awaiting that!

But overall, Hayley continues to do well, and if this is the start of engraftment, we're on world record pace for cord blood!!

We've learned of several children who lost their battles with cancer this week, and each loss breaks our hearts all over again. No parent should have to endure that heartache and despair. Before this experience, I, in my lifetime, had only known ONE parent who lost a child. And now...there are just way, way too many. And so, tough as Day 10 may be, we are counting our blessings. We are STILL in the fight and feel poised for the most awesome victory!

Keep on praying!
Dayna, Alan & especially Hayley

Saturday, November 13, 2004 DAY 9

Well, our white count went back down to zero today, but that was expected. The doctors believe the combined rash and fever may be something called "engraftment syndrome," and if so, we'll expect that white count to pop back up over the next few days. That would be a nice scenerio! Of course, it could also simply be a virus - only time will tell. The good news is that the fever is gone (without tylenol), and all Hayley's blood cultures have come back negative for infection. Praise God!

Hayley is quite hoarse (from the sores), and definitely needing her pain medicine. But in spite of that, she's up and playing, as active as ever. Her latest favorite is painting in the bmt playroom. She likes to have at least five brushes on hand to create her masterpieces, and is quite the artist! She also LOVES to play peekabo with the other kids through the glass. It is so sweet but also breaks our hearts. The last time she was able to play with other kids was July 4th, and she'll be unable to for a while yet. But boy does she WANT to!

With Grammie & Grandpa on duty, Alan, Nana & I got out for a nice dinner last night to celebrate his birthday. It was so nice to be "normal" - even for a few hours. Thanks for all those birthday wishes. Hospital and all, he had a great 30th thanks to all your kind words!

And lastly, I'm happy to report that Hayley received platelets last night with NO WAIT. I expect that will be the story from here on out thanks to your generosity - you're all amazing, and we thank you!!

Keep on praying!
Dayna, Alan & especially Hayley

Friday, November 12, 2004 DAY 8

As the dawn of Day 8 approached, the fever arrived. It's being easily controlled with Tylenol, but they've started the usual precautions: blood cultures, another antibiotic, and because Hayley is "high risk," they've also started an anti-fungal medicine. Hayley is also covered in a head-to-toe rash, cause unknown, but apparently rashes are incredibly common during transplant.

So, if you're thinking this all sounds bad, here's the good news. Hayley delivered on Dad's birthday with a white count of .11 (up from ZERO), which COULD be the start of engraftment. (This is not very likely as its WAY early for a cord blood, but hey, until it dips down, we'll be happy about it).

We had a message on our home phone last night from the Director of Platelet Donation at the Red Cross. (She got our number from one of you generous donors). In any case, she was calling to tell me that we have the most amazing group of supporters, and that she's never seen people come out in such droves to donate. How awesome is that? Not only is Hayley benefiting from your generosity, but countless others are as well. Thanks for taking the time to make a difference!

Please keep praying for all donor engraftment and for controllable fevers. Hayley probably won't have many white cells to fight back for another week or so, but we know your prayers can do the fighting for her!

Keep on praying!
Dayna, Alan & especially Hayley

_______________________________________

DAY 7
We've always been told that the second week is hardest following a donor bmt, and Day 7 seems to indicate as much. Hayley is starting to drool A LOT, which is significant because it means it hurts her to swallow. She has a few additional mouth sores which are visible, and likely several more that aren't. So, they may increase her morphine level again today. (I'm still grateful for it, but it is a STRANGE thing to have your 21 month old on morphine!) But, overall, we're reminded that she's doing incredibly well for Day 7. Please keep praying that the symptoms don't get much worse and for a speedy donor engraftment! We'd love to see some white cells on the scene by next weekend.

Hayley did get platelets again today (no problems) and her first blood transfusion of her NEW blood type, A-! So, that was an exciting milestone.

But mainly today, I wanted to talk about someone else. You see, Alan's 30th birthday is tomorrow! (I know our neighbors are thinking "FINALLY!!")It's definitely a milestone year, worthy of a big celebration. And though we've all spent our birthdays in the hospital, this one hits me hard.

Before Hayley got sick, I had planned that this would be the year of the paintball party. (Don't ask me why, but he's always wanted one!). And now, of course, it will have to go on hold another year. Alan could care less, of course, but it's made me reflect on his 30 years. If there's anyone who knows exactly how unfair this world can be, it's Alan. He's lost not one, but two fathers in his 30 years. One to a car accident at 5; the man who raised him to a violent shooting at 22. And now, this year, he's been faced with the very real possibility of losing his only daughter. So, I guess I was thinking that if anyone has a right to doubt God, it's Alan. If anyone has a right to be hopelessly depressed, it's Alan. If anyone has a right to be angry or bitter, it's him.

And yet, if you've spent even five minutes with him, you know that's just not who Alan is. Now, I'm not saying he hasn't shed his share of tears or had his "I've had it" moments. We all have. But truly, he has been such a rock for me throughout this process. Amazingly, he still believes and believes strongly. And when I'm down, he's up. He is the perfect balance of fact and faith. He researches what needs to be researched, but doesn't get consumed by those facts. AND somehow he walks in the hospital every day with a smile on his face, full of hope and optimism. I've had countless nurses, parents and patients tell me that his smile can light up the hall, and it does. He's never met a stranger, and people intuitively want to be around him. He could tell you the story of virtually every child on the floor, and I know he'd adopt some of these kids in a heartbeat if he could. He encourages people just by being who he is. And of course, he is the most amazing Dad to Hayley. He can make her laugh like no one else, and I'm not kidding when I say he's spent just as many nights in the hospital as I have (probably more!). If I had to go through this with Hayley, I can think of no other soul on earth I'd rather have by my side.

So, I'm really wishing I could have that party to say thank you. But it will have to wait til next year, and maybe that will be even better. Because I'm fully believing that Hayley will be the very first to splatter her Daddy with paint!! Happy birthday, Alan. We love you!

Wednesday, November 10, 2004 DAY 6

Everything is pretty much status quo on Day 6, and we think that's a good thing! Hayley's blood pressure has stabilized so they've dropped one medicine out of the mix. Now, we're down to only 15 or so a day!

The highlight of the day was Hayley's first ever pedicure! (I know some of you are shocked I even waited this long). She didn't quite get the "wait til they dry" part, but Hayley sure loves showing off her pink piggies now! You knew that would be the color, didn't you? Alan even did a pretty good job with the painting. Who knew?!? :)

Otherwise, Hayley continues to be in pretty good spirits, although she can fly off the handle at a moment's notice thanks to the steroids (but this is a breeze compared to her Decadron rages at SR). She did take a FOUR hour nap today, but we really think she just wore herself out playing so hard this morning! She will likely need another platelet transfusion in the a.m., as she was borderline today. Thanks for all those donations!! I am fully expecting that it will be NO trouble to get them here.

Our NP Ellen doesn't share Alan's optimism for a Day 15 engraftment. I get a kick out of her grimace each day when Alan says how many days we have left to go. Doesn't hurt to shoot for the moon, right?

Please keep praying for engraftment of ALL donor cells (whenever it happens!)and protection from infection. We know your prayers are playing a huge part in Hayley's awesome progress thus far.

Love and hugs,
Dayna, Alan & especially Hayley

Tuesday, November 9, 2004 DAY 5

Everything continues to progress smoothly in Room 359. There are a few daily chores Hayley detests (mouth care and oral meds chief among them), and she would be in quite a bit of pain without the morphine from the mucositis/mouth sores. BUT..we feel blessed that she's not violently ill, that she's not lethargic and confined to bed, and that she's not battling major fevers and infections. Those are all very common side effects at this point post-transplant so every day without them is a good day! Praise God!!

Hayley's latest favorites are playing with her new tea set(Thanks, Jesee!) and honking noses! I'm not sure how little girls intuitively know what to do with a tea set, but they somehow just do!

As promised, the doctors have added GCSF (white cell growth hormone) and a steroid (for prevention of graft versus host disease) to Hayley's medicine mix. So far, she seems to be handling the steroids, which usually produce her grumpy alter-ego, pretty well.

The only new medical development is a slight rash on Hayley's face and head. With all the medicines she's taking, it's hard to pinpoint the exact cause, but two possibilities are that it's a leftover reaction to the ATG (horse serum) or it could be an early indication of graft versus host disease.

So, although that's unlikely, we thought you all deserved a crash course in graft-versus-host disease (GVHD). Essentially, GVHD occurs when the donor cells recognize Hayley's body as foreign and begin attacking her cells and her organs. GVHD can occur anytime after a bone-marrow transplant - even years later, but it most commonly occurs in the first 100 days, typically AFTER engraftment. Cases range from mild to severe, with severe cases being life threatening (major organs are attacked and their function is impaired).

But GVHD is definitely one cloud with a silver lining. Researchers have found that with GVHD, there is also a graft-versus-leukemia effect. Meaning, the donor cells also attack and KILL any cancer cells that might somehow have survived the transplant.

Unfortunately, doctors can't separate the two. You can't have graft-versus-leukemia without graft-versus-host. And so, doctors typically try to prevent it all together with steroids and cyclosporin (both of which, Hayley is on). However, with Hayley's history, the doctors know a touch of GVHD might be a good thing (because of the graft-versus leukemia effect) and they are keeping her anti-meds at the lowest possible doses. But nobody wants her to have a horrific case of GVHD either. You can see that it becomes a fine line to walk! We're not really asking you to pray that she gets GVHD or that she doesn't - simply that whatever's best for Hayley will happen!

So, now we've flooded you with medical knowledge, but hopefully it gives you some understanding of GVHD, as it's likely to pop up again in future journals. Know our primary focus is still engraftment of all DONOR cells and protection from infection. We'll cross the GVHD bridge if and when we get there!!

Thank you for your constant prayers. In the midst of it all and on Day 5 especially, God is so very good!!
Dayna, Alan & especially Hayley

Monday, November 8, 2004 DAY 4

Not much news on Day 4. Hayley's mouth sores aren't bothering her as much after a slight elevation to her morphine drip. She eats every now and then to supplement her IV food, and is actually playing and walking around even more than yesterday. The doctors are really happy with her progress so far, although careful to remind us that the symptoms may still get worse.

Tomorrow, the doctors will add GCSF (the white cell booster) and a steroid (to help with graft vs. host) to Hayley's medicine mix. We're hopeful that the steroid won't be too mood altering!!

We're told that the donor stem cells should already be in Hayley's bone marrow at this point. Isn't that cool? Now it's just a matter of getting those new cells to grow - and keeping Hayley's at bay. I'm still betting on Day 21 for signs of engraftment, but Alan's become super-optimistic for Day 15!! For once, I hope he's right! :)

We continue to be so thankful for your support, friendship and prayers. We often have too many people to thank individually (and I am hopelessly and permanently behind on thank you notes), BUT...we thank God for each of you and the ways you help us through this journey every day.

Keep on praying!!
Dayna, Alan & especially Hayley

Sunday, November 7, 2004 DAY 3

We're still plugging right along on Day 3. It was a milestone day in that we discovered Hayley's first ever mouth sore. While expected, it was definitely an unpleasant discovery, and Mom & Dad have been pushing the morphine pump a bit more than yesterday as a result. Although there is only one visible in the mouth, the doctors remind us they may extend all down her GI track. But she's still up and playing, walking her laps like a pro once again.

In addition to comfort, the other main concern about mouth sores is that they are a potential breeding ground for infections. But so far, Hayley is managing to keep the fevers at bay.

Unbelievably enough, Hayley isn't sick to her stomach at all (with NO nausea medicine). Can you believe it?!? We are so thankful! The mouth sore/mucositis is making it a bit uncomfortable to eat (although she still gives it an awesome effort). They may start her on a small amount of base IV food just to ensure all her levels are appropriate, but we're thrilled her tummy continues to feel so good.

AND, last but not least, you'll be excited to know that Hayley had a platelet transfusion again last night with NO WAIT!! She may need platelets every other day for quite a while, so thank you for taking the time to donate!

Please keep up those prayers for donor cell engraftment and protection from infection!!

Thanks for your tireless support!
Dayna, Alan & especially Hayley

PS - NEW PHOTOS, at last! After 9 months, we finally have bald baby photos. If you've gotta be bald, it's good to be beautiful!

DAY 2 UPDATE:
Day 2 has been a surprisingly GREAT day! Well, truth be told, it started out a little rocky, but sped steadily upwards from there.

Hayley woke up, and we could immediately tell she was more lethargic and cranky than usual. A quick call to the doctors confirmed that a very low dose of morphine might be in order for her mucositis. We were a bit uncertain, but figured it was worth a try. Well, let me say something I never thought I'd say: "Thank God for morphine!" Within five minutes of that tiny dose, Hayley was right back up playing, happy as a clam. She was obviously in more discomfort than she let on. She even began eating again afterwards (which she had finally quit doing mid-day yesterday), so we have managed to hold off the IV food for another day.

With her having perked up a bit, we thought we'd take her out and see if she was up for some walking. And guess what?!? Hayley decided to walk an official lap around the nurses station (which at Egleston, is huge - picture a 1/2 basketball court). Not only that, she proceeded to walk more than a DOZEN laps. We finally stopped counting. She just bopped along from one picture and screen to another with boundless energy and with NO anxiety about the all the people. Can you just see our jaws on the ground?!

So, if that weren't enough, Alan & I had our Star 94 radio debut. We finally made it on air about 8:40 a.m.; hopefully, we didn't sound too dopey (I haven't heard the tape yet!) No sooner did we return to our rooms than the care-a-thon called up to let us know someone had just made a $500 contribution to the hospital in honor of Hayley! They wouldn't tell us who, but if it's someone who's been following our story, you have our deepest thanks. We would do anything to give back to these hospitals after they've given so much to us. We can't wait to share the true miracle of Hayley's complete recovery next year!

And the icing on the cake of our day was seeing Little Jack happy and giggling, sharing his own story around 11:00 a.m. I hope some of you were able to catch it, as his family was so eloquent. I don't think there was a dry eye in the house when Jack handed over his piggy bank to the hospital. Go, Jack!

So, on Day 2 our hearts are full. Hayley is doing well, and all pain issues (and high blood pressure) are being easily managed. Side effects don't generally improve until after engraftment, so we just pray the effects don't get much, much worse. Dr. Haight reminded us today that engraftment for cord blood can be anywhere between day 14 and day 42 (YIKES), but we're betting on day 21! Only 19 days to go.

Please keep praying for ALL donor cells to engraft and for protection from infection. Our hearts are full. Hope yours are too.

Keep on praying!
Dayna, Alan & especially Hayley

Friday, November 5, 2004 DAY 1

It's Day One! We're on the right side of the number line now and plan to be counting upwards for the rest of Hayley's life! Ironically, our Day 1 is our good friend Merrill's Day 100! Congratulations, Merrill! We are sending big hugs your way on this milestone day.

The doctors continue to be impressed with how Hayley's handling everything. Dr. Horan, actually, was fairly shocked at how good she looks - not only because of the pre-transplant regimen she just endured, but particularly because she came into transplant with obvious cancer AND with a virus. He smiles every day in amazement when he sees her up and playing! We know your prayers are making a difference!

But there will be some side effects, probably sooner rather than later. Hayley is starting to develop a hacking cough, which is an early sign of mucositis. What the heck is that, you're probably wondering... Well, you might remember that chemo and radiation kill ALL fast growing cells (hence, the reason cancer patients typically lose their hair). Some of the other things the treatment effects are the cells that line your mouth, esophogous, stomach and intestines. They die off and create a lot of mucus; hence the coughing. At this point, it's not painful for her (just annoying), but we're prepared to add pain medicine as soon as she needs it. For now, she's still content to roam and play, every bit the normal 21 month old. Elmo is definitely starting to rival her affection for Barney, and this girl is obsessed with stickers!! (Thanks, Gramma Judy!)

ALSO, you'll be happy to know that Hayley had her first post-transplant platelet transfusion last night (her 41st transfusion this year), and there were NO DELAYS in getting it! A huge thanks to all of you who have already donated and who have plans to donate in the coming months. You are making a difference!

Please continue to pray for the speedy engraftment of ALL donor cells (we're taking bets on when this might occur!) and for protection from infection and veno-occlusive disease. And, of course, if the side effects of her treatment weren't too horrible, that would be an added blessing.

Your support and encouraging words keep us going each day - we read your entries many, many times; sometimes we smile and sometimes we cry. But we always feel blessed to have each and every one of you behind us on this journey.

Love,
Dayna, Alan & especially Hayley

ps - For those of you waiting for our radio debut on Star 94, we're now going to be on tomorrow morning (Saturday) at 8:00 a.m.! Apparently, the radio business runs behind schedule too!

AND, we realize how hopelessly old all the photos on this site now are, and will try and get new pics posted sometime this weekend!

Thursday, November 4, 2004 DAY ZERO!!!

RADIO UPDATE: Things were running a little behind at Star94 Care-a-thon, so we have rescheduled for tomorrow a.m. at 8:00 a.m....That's showbusiness :)!

Everything's still going well! Just wanted to tell the local among you to tune into Star 94's Care-a-thon tomorrow. Alan & I were asked to share Hayley's story at approx. 9:30 a.m.! It's live so hopefully we won't blow it!

___________________

Happy re-birthday, Hayley!! Praise the Lord - the transplant is finished!! Wow. Can you believe it's actually Day Zero?!? What a trial to get here, but how happy we are to have overcome. Shout to the Lord with joy all the earth!!

The doctors and nurses call transplant day a new birthday. And we do believe it's the beginning of a new, cancer-free life for Hayley; and certainly the birth of a new blood system. It marks the arrival of the CURE. Here's how the big day played out:

That precious syringe of cord blood arrived in our room shortly after 11 a.m., decorated to the hilt with stickers. The room was packed with Mom, Dad, Nana, Grammie & Grandpa, along with several nurses and doctors. And then the main event - they simply pushed those precious cells right through Hayley's line. It took a total of 4 minutes. FOUR minutes! And as promised, you could smell the preservatives - just like creamed corn. Unfortunately, Hayley could taste it too, and promptly threw up. But, being the teflon girl that she is, within a half an hour, she was down on the floor playing again and eating a big lunch (the nurses were shocked over that one). But ham and a grill cheese were just what our girl wanted! Our sweet nurses and techs from Scottish Rite called shortly after the big event, cheering and clapping on speaker phone. Thanks, guys - our day would have only been more perfect if you all were here!

The emotions of the day are hard to describe. Excitement, joy, relief, and yes, a little nervousness.

Oh, how we wish we could just pronounce Hayley cured. But the 100 day countdown is just beginning. Most major complications from donor bmts occur in the first 100 days. The 100 days will be extra important for Hayley. As we all know by now, she relapses quickly. If she's going to relapse (SHE'S NOT!!!), it's likely to happen in those 100 days. We have been told many times that the hard part is coming over the next few weeks, when the radiation and chemo side effects kick in, and her immune system is completely non-existent. But Hayley tends to surprise people so we'll just wait and see.

The major, major prayer requests for the next few weeks are engraftment of all donor cells (Sorry, Hayley, but we don't want ANY of your cells growing back!). And also, for protection from major infections as well as veno-occlusive disease (liver failure). Once the new cells engraft, graft versus host disease will become an issue, but we'll be happy just to see Hayley engraft!

We can't let the day pass without an enormous thank you to the woman out there who donated her baby's cord blood. Our little girl now has a second chance of life, because of this precious gift. And so, we urge all of you who are pregnant or know someone who is, please ask your doctor about donating your cord blood. (It's not often advertised, but is available, and doesn't cost you anything). Of course, you can save the cord for yourself if you prefer, but don't let them toss this valuable gift of life in the trash can. Truly, it can SAVE lives - Hayley IS and will continue to BE evidence of that.

So, on this wonderful day zero, all that is possible to be done medically to get rid of Hayley's cancer, has been done. It's all up to the Master Physician now. And we know Hayley couldn't be in better hands.

I stumbled upon this quote last night, and just love it:

"Faith is the bird that FEELS the light and sings when the dawn is still dark." - Susan Branch

We can't SEE the light just yet, but boy do we FEEL it!! We hope you all do too. We are in "believal" more than ever!

And lastly, to our sweet Hayley, on your new birthday: One day, honey, you will read about all that you've endured, and all the people who prayed for you and loved you. We know you'll just be amazed. Please know that Mommy & Daddy love you more than words can say. You have taught us more about life and love in your short time on earth than we've learned in a lifetime before. We can't wait to see what you do with the rest of your life. You are our joy, our princess, our hero, our most amazing daughter. You are, and always will be, our most perfect gift from God. XXOO

Wednesday, November 3, 2004 , Day - 1

Now that I probably have you in a state of panic, just wanted you to know the line is working fine. We are off to our last radiation in a few minutes and then...TRANSPLANT at 11! Thank you, Lord for getting us to this day!! Much, much more later...

9:00 p.m. - SPECIAL PRAYER REQUEST!!
Friends - It's a mere 3 hours until Day zero, and wouldn't you know, we've run into yet another POTENTIAL complication...Out of the blue, Hayley has started cringing and crying everytime the nurses flush her line with saline. They have to flush her line a zillion times every day and it never hurts her so this is really odd. The only thing we can come up with is that there is an internal piece of her line ready to break off, and the liquid passing through is irritating it (the constant flow of medicine doesn't bother her, but the stop and start of the flush does). They are calling the doctors right now to see what we need to do. There is no reason this should prevent the transplant from happening (there are work-arounds if they can't use the line), but your prayers are appreciated for Hayley's comfort and no major problems!! Don't worry - the transplant WILL HAPPEN!!

___________________

The ATG is done and only one radiation treatment left! Hooray! Hayley's IV pole has become loaded with machines to support all the medicines they give her prior to the transplant. It's no small feat to drag that thing around any more. They tell us the only things missing now are the PCA (pain pump) and the IV "steak in the bag," but we'll gladly keep those away for the time being.

The actual transplant will occur around 11/11:30 tomorrow morning after Hayley's final radiation treatment. The cord blood will be in syringes, and just pushed straight into her central line. The whole transplant will probably only take 10 minutes! Of course, they watch carefully for reactions, etc. And then the hard part begins - waiting for engraftment! Somehow, the donor cells know to find their way into Hayley's bone marrow and begin producing healthy cells. We expect that to start happening around Day 21.

As for the cord blood itself, we don't know a whole lot. We DO know that it's from a little girl, who has A -blood so Hayley's blood type will eventually change from A positive to A -. Isn't that crazy? If the donor was a boy, she'd have a Y chromosome. Unbelievable! Modern medicine never ceases to amaze me!

On another subject, our primary nurse, Deb, made our day when she saw us head out to the halls and said, "By the way, you know Hayley doesn't really have to walk 10 laps, right? As long as she's up and playing and at least walks to the playroom, etc., that's fine?!?" You can't imagine our relief! Truly, it was a nightmare yesterday. It's not that Hayley can't walk, obviously, but it's a security thing with all the people out there. And yesterday we were trying to force her, and she was just screaming and pleading with us to pick her up. It was awful. I think she walked about 20 paces before we caved in, scooped her up and retreated back to the room. It literally took us 30 minutes to calm her down. She is so good about everything else and I think this was just pushing her over the edge. Today, with the pressure off, she's happily walked down the quieter back halls and had a grand time in the playroom. Ahh...another answered prayer - even if a relatively minor one!!

We can't wait to start counting plus days after tomorrow! Please pray that Hayley's final radiation treatment takes care of every last cancer cell and for a smooth transplant tomorrow. We believe with all our hearts that this transplant, with a lot of help from God, will deliver the cure we've been waiting for.

Keep on praying!
Dayna, Alan & especially Hayley

Tuesday, November 2, 2004, DAY -2

I think everyone must have been praying overtime because Hayley's second day of ATG was SO much better than the first. She's had no fever all day(in spite of predictions, it broke around midnight last night) and no plummeting blood pressure like yesterday! That is awesome!

On the downside, it seems our 'trade off' has been a bright red rash, all over her face. But it doesn't bother Hayley a bit, and she's been happily playing all day.

Because she had an elevated fever for a good portion of the day yesterday, the doctors went ahead and started her on two broad-spectrum antibiotics. If we can keep the fever away for another few days, we can hopefully drop one of the antibiotics out of the mix.

Another answered prayer was a NEGATIVE viral panel. Praise God!! Hayley has been officially taken off isolation, which means she can visit the bmt playroom, roam the floor and of course, do her required 10 laps (with mask!)!. Honestly, after our first attempt at doing laps, we're thinking isolation wasn't so bad. The lap thing was pretty much a disaster - hopefully, she'll like the idea better tomorrow.

Only three radiation treatments left and one day of ATG! Our primary two prayer requests are still destruction of every cancer cell and protection for Hayley's developing mind and organs (especially liver, kidneys, heart and lungs).

The CURE is only two days away!!!

Monday, November 1, 2004 DAY -3

All things considered, Day -3 went well. And no, Hayley isn't "neighing!" Actually everything was humming along perfectly, no problems with the morning radiation and Hayley was still in a decent mood in spite of the lack of food. The ATG (horse serum) infusion even started without incident. Then, 3 hours into the 4-hour ATG infusion, Hayley spiked a 102 temperature and her blood pressure started dropping. These are all common side effects of ATG, but of course, we were hoping to avoid any effects! It was pretty hard to take her down to her second radiation and watch them put her to sleep, knowing she was fighting the fever and low blood pressure. But, trooper that she is, she handled the radiation just fine, and is now back waching Barney in her room.

At the moment, the doctors tell us Hayley probably feels like she's got the flu. But she's not in any pain - just content to lay in bed, cuddle up and watch her favorite shows! She'll most likely continue to run the fever until the ATG is completely out of her system at the end of the week.

All in all, a pretty benign reaction to ATG. We feel fortunate that she didn't experience the severe chills and hives, and that her blood pressure came back up quickly enough to keep us out of ICU.

PHEW. Just two more days of combined raditation/ATG to go. We'll be SO happy to have it all behind us. Our primary prayer requests remain:

1) Complete destruction of ALL cancer cells
2) Protection for Hayley's developing mind, and all major organs (especially liver, kidneys, heart and lungs)
3) For Hayley's ATG reaction to stabilize and improve as soon as possible

Thank you for your continued support and prayers and for loving our little girl so very much!

Keep on praying!!
Dayna, Alan & especially Hayley

Sunday, October 31, 2004 DAY - 4

Happy Halloween! Everything's still going smoothly in room 359. As far as we're concerned, we're done with Cytoxan (and every other chemo) FOREVER, and it's a great feeling. So far, the treatment hasn't gotten Hayley down - she's happy and playful as ever.

In case you missed Alan's update, I got the best gift ever yesterday. For the first time, I was on the receiving end of the most perfect, sweet kiss right on the cheek from Hayley. Now, she's been blowing kisses forever, but this was the real deal. It was pure bliss!

So, for today, things continue along without any bumps. For the most part, Hayley does her chores without a fuss, for which we're very grateful!

Tomorrow's when things have the potential to get really interesting, though. Hayley will have total body irradiation at 7:30 a.m., and then again at 1:30 p.m. (This means she can't eat until roughly 2:30 p.m. What fun!). In between the two radiation sessions, she will receive the ATG for the first time at 9:00 a.m. ATG is the horse serum, which helps prevent graft rejection, and is known to have some nasty side effects. They're going to be pre-medicating Hayley with Tylenol, Benadryl and a steroid to try and minizme any effects. AND somewhere in the middle of all this, they're going to squeeze in another viral panel (which basically amounts to a not so fun nasal aspiration). Plus our usual mouthcare, oatmeal baths, weight checks, etc. Should be interesting, huh?!

So, as we head into tomorrow's busy day...our prayer requests are many:

1) Complete destruction of ALL cancer cells
2) Protection for Hayley's developing mind, and all major organs (especially liver, kidneys, heart and lungs)
3) Controllable side effects (if we have to have them at all ) from the ATG
4) A negative viral panel result

AND the strength to endure for all!!

Hoping you too will treasure every smile, laugh, kiss and hug!
Dayna, Alan & especially Hayley

Saturday Evening, October 30, 2004 DAY -5

EVENING UPDATE From Dad: Shortly after Dayna posted the below update Hayley surpised us with a first...Drum roll. Mom and Hayley were playing with giant Leggos when Mom asked, "Hayley can you give Mommy a kiss?" This is something that haven't "practiced" too much, so I wish you that you could have shared the moment when Hayley puckered up and gave Mom a big smack on the side of her cheek...to see the look in my wife's eyes was priceless, especially as Hayley leaned over and planted two more big ones. I am not sure if Dayna's cheeks were more wet from her own tears from the "sweetness" of it all, or from the slobbery kisses! For such a little girl, she grabs hold of our hearts in a big way every day:). We love you all and are so thankful to have you taking this journey with us.

AFTERNOON UPDATE: It's Day -5, and everything's going smoothly. Hayley is tolerating the Cytoxan without problems thus far, still up and playing and eating just like normal. We sure are busy, though. They've got her on a high volume of fluids, and we have to change her diaper every hour to ensure there aren't any traces of blood (Cytoxan can be hard on the bladder). Add to that mouthcare 4 times a day, oatmeal baths, lots of meds, dressing changes, and there's no time for boredom!

You may notice that I left out her "laps" among her chores. That's because until they retest for adnovirus on Monday, they've asked us to stay out of the common areas. So, while we're technically off isolation, we're really not! It's only laps around the rooms while playing for us. A blessing in disguise, I suppose.

Tomorrow brings another early morning dose of Cytoxan. Although she's handled everything great so far, the effects are cummulative, and we've been assured she'll be feeling pretty stinky come Day Zero. But Hayley's surprised them before; she can do it again!!

Please keep praying for the destruction of every last cancer cell. The number one reason for failed transplants is relapse. Even once Hayley gets through the engraftment phase, they tell us she'll have a 60 percent chance of relapsing. So, these next 5 days are critically, critically important. We don't want one single cell to survive. It's our last chance to get them, and we intend to do just that! We're fully expecting God to guide the chemo and radiation right to the targets! Go Cytoxan, Go!

Keep on praying!
Dayna, Alan & especially Hayley

FRIDAY'S UPDATE:
Hayley's transplant is on for next Thursday, November 4th!! Tomorrow will be considered Day -5, and she'll begin her pre-transplant regimen with high-dose cytoxan bright and early - at 6:00 a.m.! Cytoxan is an extremely nauseating chemo in many children - we'll just have to wait and see what effect it has on Hayley. We pray it won't be too terrible, since it's now been flipped to the front of her schedule. The rest of the week breaks down like this:

Sat. 10/31, - High dose Cytoxan
Mon. 11/1- Wed. 11/3 - Total Body Irradiation (2x a day) and ATG (anti-rejection serum)
11/4 (DAY ZERO!)- TBI (only in the a.m.) AND TRANSPLANT in the p.m.

You may notice that the pre-transplant prep seems shorter than before, and it is! However, Hayley's still receiving all the same chemo/radiation. It's just that, since the radiation is now last, and its effects are immediate (versus Cytoxan which lingers in your system), there's no need for a "day of rest" between the radiation and the transplant. Hence, Hayley can have her final radiation and the transplant on the very same day.

The pre-transplant preparation is meant to destroy ALL remaining cancer AND Hayley's immune system in preparation for the transplant. Because Hayley is receiving a cord blood, the transplant itself will likely take only 15 minutes on Thursday. Then the critical waiting period begins. After the transplant infusion, the cord cells will begin circulating in Hayley's blood stream. Amazingly, they somehow "know" to find their way into Hayley's marrow and begin producing white cells for her. This process is called engraftment, and for cord blood, can occur anywhere between Day 14 and Day 28! Fortunately, the doctors tell us that Hayley's cord is "juicy" with lots of cells, and that they expect her to engraft closer to a marrow timeline (Somewhere between Day 14-21). The major risks during the waiting period are life-threatening infections, failure to engraft and liver failure. Hayley has already begun taking several medicines to protect her liver, as she is considered high-risk. There are risks post-engraftment, as well, but we'll save that for another day!

I talked to the doctors today and they predict that the hardest part of the transplant process will likely be AFTER the transplant when the chemo/radiation side effects set in, along with infections and fevers.

HOWEVER, they also said that the ATG Hayley receives next week can be really rough. ATG is used only for cord blood transplants. It is a horse serum, that helps prevent graft rejection (Hayley rejecting the new cells). Yep, you read that right - it's HORSE serum. She'll really "neigh" all the time now, huh?!? Since it comes from a non-human source, the majority of children have fairly severe allegic reactions to the medicine, including extremely high fevers, major chills and hives. Please be praying that Hayley will handle all of her chemo/radiation well, but particularly the ATG.

In spite of all the risks and scary side effects, you've never seen a family more excited to get this transplant underway. We have gone through so much just to get to this point. Once we start tomorrow, there's no turning back. And that's ok with us! We have six days for God and the medicine He works through to rid Hayley's body of cancer FOREVER. Please be praying that every last cancer cell is destroyed, obliterated, GONE, GONE, GONE.

"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." Isaiah 43:2

We love you all. Thanks for journeying with us!
Dayna, Alan & especially Hayley

Thursday, October 28, 2004

Believe it or not, I have ALL good news to report! How's that for a change?!

Hayley's viral panel today came back negative for adenovirus (& everything else)! Honestly, this is pretty much a mini-miracle in and of itself. After talking to the infectious disease team yesterday, they told us that the virus might stay in her system for up to two weeks. So, that is great news that it's gone! Praise God!!

The second piece of good news is that we will be starting the transplant chemo/radiation this Saturday, Oct. 30th, with the actual transplant falling either Thursday or Friday of next week. They are working all the details out now, and I should have a definite date tomorrow.

We actually learned last night that they were going to proceed with everything Saturday REGARDLESS of how her viral panel came back today. The move forward was, of course, because of the progressing cancer. Today's news gives everyone more peace about wiping out her counts and moving forward. Now we can do it with no reservations. Full steam ahead! Praise God for answered prayers.

And, if that's not enough, our good friend William, was able to go to the hotel today! That is awesome that he is doing well enough to leave so quickly after his stem cell rescue. We will miss them, but are thrilled they're out of here.

As we move into the weekend, please keep praying for destruction of ALL cancer cells, protection from side-effects and for Hayley's ultimate healing!

With big grins!
Dayna, Alan & especially Hayley

Wednesday, October 27, 2004

Hayley continues to feel great in room 359. Based on her bloodwork today, the cancer does seem to be spreading, as we're starting to see a few abnormal cells in her blood. This was expected, but still no fun to see.

Hayley's viral repeat test will be tomorrow morning; and we should have results by early evening. Based on her lack of symptoms, we're optimistic that it will come back negative and that we'll be able to start treatment on Saturday.

Please keep up your prayers for a SLOW cancer spread and for negative results tomorrow, and of course, that Hayley's transplant will be a reminder to all of what God can do!

Love,
Dayna, Alan & especially Hayley

Tuesday, October 26, 2004

All we can say is "WOW!" I spent hours this morning opening e-mails from people willing to donate platelets on behalf of our daughter - many from other states; some even willing to drive from another state TO Atlanta. Wow! We probably won't be able to respond to each one of you, but know we've gotten your notes, and are so thankful for your willingness to help. I'll give a quick update on Hayley first, and then get back to the platelets!

Hayley is doing great - no sniffles; no cough, looking and feeling great. We have probably played "Ring around the Rosie" and "London Bridge is Falling Down" 100 times today! We feel very blessed that she continues to feel so good. Every other time Hayley has relapsed, she's started to feel lethargic pretty quickly (as the cancer spreads, it makes you very tired). We are taking it as a great sign that she continues to be full of energy, believing it's because the cancer is NOT spreading aggressively. Of course, that could change at any time so please keep praying that the cancer does NOT multiply. Other than receiving the IVIG (antibodies) and being trapped in isolation in her room, Hayley's days are pretty easy right now.

The doctors will be repeating the viral panel on Thursday. We need this to come back NEGATIVE and for Hayley to remain symptom free in order to proceed with transplant. Please keep praying to that end!

We've learned a lot more about the process of direct donation today. Due to many, many factors, it seems that the best thing for everyone in the Atlanta area to do is proceed with donating platelets as a "community donor." You can do this by calling 1-800-826-2026 to make an appointment. They will be able to answer any questions you have about eligibility and locations. The most important times for Hayley to have platelets will be the entire months of November and December. So, please consider donating whenever is convenient for you during that time frame.

The reasons for doing "community" donation versus "direct" in our particular case are many.

Platelets only have a shelf-life of 3-5 days, and we don't want any donations to go unused when others could benefit. "Community donation" is ALSO more convenient for you as you can give on Saturdays (you can't do this with directed). Community donation is ALSO free to us versus a $70 fee for each directed donor, AND as long as the general supply is at a decent level, there is no reason Hayley should ever have to wait for platelets. If there comes a time when it IS an issue or our doctors advise differently, rest assured, we will kick the directed donor program back into action (RC already has the list!)

So, instead of giving directly FOR Hayley, we hope you will consider giving in HONOR of Hayley, knowing that she will get the platelets she needs when she needs them. Remember, she will need platelets the entire months of November and December, so you can give any time during this period, and frequently if you wish. I actually just received an e-mail from someone who ALREADY made her appointment. Apparently, the Red Cross worker asked how she found out about giving platelets and she mentioned Hayley's site. The Red Cross worker responded that several others had already made appointments because of Hayley as well. You have no idea how that warms our hearts. We are thankful for your unfailing support!

Keep on praying!
Dayna, Alan & especially Hayley


GENERAL INFO:
By donating your platelets through platelet
apheresis (ay-fer-ee-sis), you give a very special gift of life. Most
patients undergoing a bone marrow transplant, surgery, chemotherapy,
radiation treatment or organ transplant need platelets in order to survive.
In fact, doctors are finding that platelets play a vital role in more and
more new therapies. With just a five-day storage life, platelet donations
are delivered quickly to the patients who need them. Platelet donors have
the satisfaction of knowing that their donation will be saving a life within
just a few days. What is Platelet Apheresis? Until recently, the only way to
collect enough platelets for a single transfusion was to take blood
donations from 5 to 10 donors, separate the platelets from the other blood
cells, and combine the platelets to obtain a large enough quantity for
transfusion. Today, sophisticated medical equipment - blood cell separators
- can collect enough platelets for transfusion from a single donor. Using a
technique called apheresis, blood is drawn from the donor's vein into an
apheresis instrument, which separates the blood into separate portions by
centrifugation. By appropriately adjusting the instrument, a selected
portion of the blood, such as the platelets, can be recovered, while the
rest of the blood is returned to the donor either into the same vein or into
a vein in the other arm. This process takes more time than whole blood
donation, but the percentage of platelets is much greater. It is a simple,
safe process - very much like regular blood donation. In fact, your body
starts replenishing platelets immediately after your donation. Within 48
hours, your body's platelets should be completely replenished. Why Are
Platelets Needed? Blood is made of four components: platelets, plasma, red
blood cells and white blood cells. The platelet component is necessary to
control bleeding. Patients undergoing chemotherapy and radiation treatments,
for example, are unable to produce enough platelets. Without platelet
transfusion, life-threatening hemorrhages could result. What's Involved By
using a special method called apheresis, whole blood is separated into
components, and the platelets are removed. Specially trained Red Cross staff
conduct the procedure while you relax, watch TV or read. The entire process
takes about two hours. Who Can Donate? You can continue to give whole blood
in addition to platelets. The same good health requirements for a whole
blood donor apply to platelet donors. And, just like whole blood donation, donating platelets is safe. In accordance with our commitment to insure the
highest level of safety, all needles and containers are sterile, used only
once, and then carefully discarded. How Often Can I Donate Platelets?
Because platelets are quickly replenished by your body, you can donate
platelets as frequently as every 48 hours, but no more than 24 times a year.
Additional restrictions vary, however, depending on the donation center,
type of procedure used, and your donation history. On behalf of the patients
whose lives you will save, we thank you. C Copyright 2004 The American
National Red Cross.

Monday, October 25, 2004

7:00 p.m.
Just wanted to update real quick with the "plan." I think everyone in Atlanta consulted (including the national expert on AML) to come up with what amounts to a pretty simple plan. And the good news is that the transplant may only be delayed by 5 days.

So, to treat the Adeno virus, Hayley will be receiving IVIG, manufactured antibodies, for 5 days. There's not much else they can do to treat the virus other than let it run its course. Since her symptoms are already improving, it appears the worst of the virus may be past (although, we aren't assuming that!). IF Hayley re-tests negative for the virus at the end of the week and IF her symptoms continue to improve, they are looking at starting her cytoxan over the weekend, and resuming total body irradiation (TBI) Monday. (A flip flop of her original transplant prep plan).

As for the cancer in her body - there's just not much they can do about that. Nothing's been particularly effective, and we don't want to plummet her counts with harsh chemo. The sooner to transplant the better. The hope is that having received the one dose of TBI this morning, the cancer shouldn't get out of control. That's obviously another big unknown, though.

Definitely not a great situation - this makes two failed transplant attempts, and we've still got cancer on the move. Please pray for FAST resolution of the virus, and that God will be glorified by Hayley's complete and total healing at the end of it all!

Keep on praying!
Dayna, Alan & especially Hayley

PS - In addition to the other drama, we have been told to set-up direct platelet donation for Hayley due to the critical shortage. The good news is that because Hayley has a positive RH, she can receive platelets from ANY blood and ANY RH type. If you would be able to give ANYTIME over the next three months, please e-mail me asap. I have to prepare a list for the Red Cross. Then, once we have the paperwork handled, I will publish a number you can call to set your appointment. More details tomorrow. For now, just let me know if I can add you to the list as a potential donor. Thank you!!!

4:00 p.m.
Well, the miracle possibilities just get bigger and bigger. Although Hayley now appears symptom free, she has tested positive for Adenovirus (apparently, it's rampant this time of year, and many people carry it). Unfortunately, it's known to be deadly if taken into transplant. Yes, deadly. And apparently more so than her already stinky statistics. So, at the very least, the transplant has now been delayed two weeks, possibly a month. The doctors are attempting to figure out some type of maintenance chemo they can keep Hayley on until her system clears. This is no easy task as chemo hasn't proven very effective on Hayley in the past and because we know she has cancer growing right now. Needless to say, we're shocked (once again) and devastated. The doctors were pretty blunt in saying "we're between a rock and a hardplace, but there's no way we can proceed knowing this." Again, I have to be grateful that a problem with horrible consequences was detected early. But how we're going to get from where we are now to transplant in decent shape, I just don't know. Fortunately, God does.

Please pray for wisdom in the doctor's decision making, for peace for us, and for Hayley's cancer - that it does not spread aggressively during this time.

As for Hayley, no one's ever told this girl she's sick. Other than being trapped in her room, she's happy as any little girl could be.

Please keep praying - hard!! :)
Dayna, Alan & especially Hayley

Sunday, October 24, 2004, DAY -8

Greetings from Egleston! We are here...at last, and we're so excited. Now we need a mega-dose of prayers from all our warriors that we stay here. What?!?! Here's the scoop. Unfortunately, Hayley definitely has a cold. I can't even believe that she's gone 8 months without getting sick, and now on the verge of her transplant, her nose is running like crazy. As a result, Dr. Chiang has ordered a viral panel to ensure we're not dealing with anything major. We need massive prayers that the panel comes back negative. If for some reason it comes back positive, then we'll have to talk about potentially delaying the transplant. As we all know (with cancer growing in her body right now), that would be nothing short of disasterous. Because we won't have the results until tomorrow afternoon, Dr. Chiang is still letting Hayley move forward with her first total body irradiation session in the morning. It will take roughly half an hour and is scheduled to start at 7:30 a.m. If the results come back ok, she will have a second session around 1 p.m. Please pray protection for all her major organs (lungs, liver, heart and kidneys especially) and her developing mind. And of course, that the radiation blasts all cancer to oblivion!!

Other than that distressing news, settling in has gone surprisingly well. We got an enormous room - with plenty of space to play! And we're right across the hall from Will! Believe it or not, Hayley has already ventured out with her mask. She cries like crazy when we put it on, but as soon as that door opens, she's happy as a clam. She already loves the BMT playroom and all the new pictures on the walls. What a blessing! I truly thought that would be much, much worse.

As for the laps, that is now a mute point BECAUSE...they've just put us in "isolation" until the viral panel comes back. What a way to start, huh?

So, again, the big prayer requests are NO viral infection, protection from the radiation tomorrow and destruction of all cancer cells!! We can't wait to see this miracle unfold!

We are so blessed to have you behind us!
Love,
Dayna, Alan & especially Hayley

SATURDAY'S UPDATE
Well, the eve of the great adventure is finally here. We can hardly believe that tomorrow we'll be checking into Egleston for the long-awaited transplant! I'm not sure we'll believe it til we're actually there.

One prayer request beyond the usual...Hayley has been sneezing quite a bit today - enough to make us a little nervous. We're hoping that it's simply allergies to the cats or something in the air outside. Goodness knows she hasn't been around anyone sick, but with a suppressed immune system, anything is possible!

Otherwise, Hayley continues to seem perfectly healthy with no side effects from her radiation. We are so thankful!

I'm pasting a message below from William's site regarding the severe platelet shortage. Please, please - all of you wondering what you can do to help...this is it. Go donate platelets. We would be so grateful. Platelets are critical for cancer patients, as chemo and radiation kill the good cells as well as the bad. During transplant, Hayley may need platelet transfusions as often as every day. As much as we've talked about this transplant saving Hayley's life, her life has ALREADY been saved more than 30 times by blood product transfusions. Alan & I will both be becoming regular donors once this is all behind us. Hayley is A pos. and can accept platelets from anyone else who is RH pos. (regardless of blood type), but please go and give whatever your RH. Our good friend Will is A-, so he can use all you RH- folks.

Hopefully, moving in and adjusting to the new hospital tomorrow will go smoothly. Other than meeting a TON of new people, it will be fairly uneventful for Hayley - just getting "connected" for fluids and some liver-protecting meds. Nevertheless, I'm sure we'll have plenty of stories to tell (mask, anyone?!)!

Keep on praying!!
Dayna, Alan & especially Hayley

From William's site -
The nurse practitioner was just in our room, and she said that she knows that we must have tons of friends and family who keep asking what they can do to help. She requested that we ask everyone we know who is at least 17 years old and weighs at least 110 pounds to PLEASE make an appointment to GIVE PLATELETS!! They always need red blood, but the platelet situation is getting desparate.

If you would like to donate platelets directly, you must first call the Red Cross at 404-253-5452 to make an appointment for directed donor donation. William is A-, and can only accept platelets from anyone who is NEGATIVE (no matter what the blood type). If you are not negative, we hope that you will donate anyway, as there are many others in need of platelets. As we understand it, you must make an appointment through the above number to go to your local donor center and donate directly to Will. I think you can donate platelets every 2 weeks. However, we know that you can occasionally call your local blood center and make an appt. Call first! I know this sounds iffy, but I have called about 6 times to try and get the correct info. I know the Red Cross has Will's name for directed donor, so don't let them tell you they don't! Betty Mitchell at the Red Cross Directed Donor Desk called to let me know she had received the info about Will.

THANKS!!

Friday, October 22, 2004

No more direct cranial radiation EVER! (8 total body irradiations to go, but at least one thing is completely behind us). They offered us the mask Hayley had to wear as a souvenior - it looked like something straight out of a horror film. For once, I gleefully tossed memorabilia straight into the nearest trash can. God willing, I'll never see one again as long as I live!! That said, Hayley did great today - and again, seems her usual happy self with no side effects. Praise God!

Sunday at noon we will be admitted to the hospital for the long haul. We expect to be inpatient through the beginning of December, and then at a nearby hotel for a few weeks beyond that. We are hopeful to all be home together again by Christmas. Wouldn't that be a great gift?!?

Next week will likely be much more intense, with total body irradiation and chemo, which are designed to completely wipe out Hayley's immune and blood system in preparation for the transplant. (And of course, kill ALL remaining cancer). We learned today that Hayley's ANC (ability to fight infection)will be quite low going into the transplant (She's at 360, and they normally won't admit under 750). But there's no time to wait on recovery for Hayley, given the cancer still in her body. So, she will need extra prayers for protection from infection, as her system will reach zero particularly quickly.

Please also keep praying that her marrow and stomach nodules do not spread quickly as they won't be treated til Monday morning. We're confident that the radiation will blast the cancer to smithereens Monday and can't wait for that moment!

Until Sunday, our main focus is having FUN, mask practice (Ugh..it's not going so well), and PACKING! Everything has to be washed, wiped down and completely sanitary! We do it gladly - we are thrilled to be ON WITH THE FIGHT!!!

Keep up those amazing prayers!
Dayna, Alan & especially Hayley

Thursday, October 21, 2004

One session down; nine to go. Hayley's first day of radiation went off without a hitch (other than some tears from Mom!). Thank you for your prayers! Once she was in the room, the whole treatment took about 30 seconds, and we could watch it all on computer screens outside the radiation area. It certainly seems like something that can cause so much damage AND healing should take a little longer! But we're grateful that it was quick and easy for her. Hayley has no side effects, although they will likely kick in next week. Here's a rough idea of how our schedule breaks down - I'll give some more detail about the transplant itself tomorrow...

Friday (tomorrow ) - CNS boost radiation
Saturday - PACK!
Sunday - Admit to hospital; start fluids
Monday - Thursday - Total Body Irradiation (2x per day)
Friday - Cytoxan (chemo)
Saturday - Cytoxan (chemo) and ATG (anti-rejection serum)
Sunday - ATG (anti-rejection serum)
Monday, November 1 - TRANSPLANT!!!

Right now, we feel like Monday can't get here fast enough. That will be the first day Hayley receives radiation to her whole body, and the very important stomach area, where her cancerous nodules are.

For tomorrow, our prayer requests remain the same:
- That the radiation hits exactly what it needs to hit and nothing more
- That every last cancer cell is obliterated
- Protection for Hayley's developing mind, her eyes, & thyroid
- That her polyps and marrow cancer do not spread aggressively during this time

I think I've failed to mention that we finally had to put Hayley's signature bows in retirement - but we know we'll be able to break them out again in a few short months. Yep, after EIGHT months of chemo, her hair finally just about gave out (we chopped a few last strands). Those were some STRONG hair follicles - I'm convinced she must get this from Alan's side of the family (Sorry, Dad!).

I can't let one more day go by without a HUGE thank you to Ronald Blue & Co., Alan's financial planning firm. The principals there have very selflessly donated their vacation time to Alan so that he can be with us around the clock during these critical weeks before and after transplant. I can't tell you how their generosity moves me, and I know Hayley is elated to have her Daddy around at all hours. Thank you, thank you, thank you.

And to all of you, whether you've followed our journey from the beginning or are just starting to follow, your unwavering support and prayers mean the world to us.

In the midst of the horror, we feel amazingly blessed. Don't stop believing!!
Dayna, Alan & especially Hayley

Wednesday, October 20, 2004

Thought I'd share my theme Psalm after yesterday's news. Whenever, my mind wanders dangerous places, I come back to it...

"I will remember the deeds of the Lord,
yes, I will remember your miracles of long ago.
I will meditate on all your mighty works
and consider all your mighty deeds.
Your ways, O God are holy.
What god is so great as our God?
You are the God who performs miracles;
You display your power among the peoples."
Psalm 77:11-14

And so we are believing for a miracle. The truth is, as much as we've thought about how this latest turn of events totally stinks; we've thought more about Jonathon, who had a 2 percent chance of survival, but was recently declared cancer free. We think about Big Haley, who was given 2 months to live, but is now expected to live a long, full life. We think about Brandon Connor, whose tumor disappeared on the eve of risky surgery. We think about Rachelle's son, who beat multiple cancers. And we think about the countless other beat the odds/miracle stories we've heard about over the last 8 monthss (many more in the last 24 hours). No, those stories aren't the "norm," but they DO happen. More frequently than you might think. And we are believing it can happen for Hayley too. Truly, with every ounce of strength we have, we believe.

We actually just returned from Egleston, where Hayley had her radiation simulation (really just a CT scan where they make measurements and a mask). She breezed through it (under sedation, of course). She was back in her room eating happily by 9:30. She actually ENJOYED the golf cart ride from Eggleston to Emory (where the actual radiation occurs), and what a joy for us to see her happy in the midst of it all. Tomorrow the fight of our lives begins in earnest. At roughly 9:30 tomorrow and Friday, Hayley will have her CNS boost radiation (a.k.a., brain radiation, but I don't like to call it that!).

Our prayer requests are:
- That the radiation hits exactly what it needs to hit and nothing more
- That every last cancer cell is obliterated
- Protection for Hayley's developing mind, her eyes, & thyroid
- That her polyps and marrow cancer do not spread aggressively during this time

Again, she heads in at 9:30 tomorrow AND Friday. The whole procedure will only take a few minutes. Please pray hard.

Truly, our footsteps are lighter after reading all of your encouraging words, stories and prayers. We thank you from the very bottoms of our hearts!
Dayna, Alan & especially Hayley

Tuesday, October 19, 2004

6:30 p.m.

I know you're anxiously awaiting an update. I guess this is one of those scenerios where you ask, "do you want the good news or the bad news?" So, the bad news you've probably guessed...the stomach pollups are leukemia - no need to wait until tomorrow. The preliminary pathology report is pretty clear. Quite simply, Hayley's disease just doesn't quit. And I thought there was nowhere left to hide!! Stomach chloromas are incredibly rare -probably 1 in 2 million at most. Hayley has gone to great lengths to prove how very unique she is.

Now, the good news is that her spinal fluid is still clear, and her bone marrow has only 2 percent blasts (technically, anything under 5 percent is remission - although we know that number will start increasing). So, the bottom line is Hayley, right now, is in the best possible shape the doctors can get her in before going to transplant. Chemo just isn't cutting it. She needs the radiation - which will hit her entire body at once; she needs the donor cells. Every doctor is in agreement, and so, the transplant is ON. And we're on the fast-track to get there - with simulation tomorrow, and radiation starting Thursday. For that, we are so very thankful.

To be clear, she will be transplanted in relapse (minor as it may be), and that is NEVER a good prognosis. Her chance of survival will be less than 10 percent. But it's not zero. There is still hope, however slim it might appear.

Once again, I marvel at how a day can entirely change your perspective. The radiation we so dreaded yesterday may be our greatest blessing in all of this. It will hit those pollups like nothing else could. We have the steepest uphill climb ahead of us; but everything to gain by moving forward with the journey.

Please pray harder than ever.
Dayna, Alan & especially Hayley


2:30 p.m.
Friends,
Hayley is halfway through her procedure. The scope is complete; they are pulling her bone marrow and spinal fluid as I write. Unfortunately, what we thought would be the easy part (the scope), has returned some scary looking pictures. Hayley's stomach is covered with about 20 pollups (or nodules). The GI doctor said he's never seen anything like it in his 20 years - the closest thing he can compare them to is colon pollups - and you know what word sprang immediately to mind - CANCER. Now, he's not saying it's cancer - and they've biopsied several to determine for sure. But you take AML, a history of bumps, and it's not a pretty picture. The other possibility is that it's just a reaction to the incredible amount of chemo she's had over the past 8 months. That is certainly a possibility, but boy do we need your prayers. Prayers that the biopsies come back negative; and prayers for our strength if they don't.

We will not have biopsy results until tomorrow. We certainly hope that the marrow and spinal fluid won't support that diagnosis - and we should still know that this evening.

Without a doubt, it will be the longest afternoon and night of our lives.

Monday, October 18, 2004

Just returned from a LONG day at Egleston. The best news of the day was that Hayley passed her hearing test with flying colors, and we were briefly able to see Carmel as well as William's Mom, Nancy. (William is stable, but still in the ICU - please keep praying). The majority of our time was spent signing endless consent forms and going over the radiation side effects. And that was a pretty sobering experience - as expected.

In the short-term, the radiation side effects are not much different from chemo (possible fatigue, nausea, hair loss, etc), and Hayley won't feel a thing as she goes through the radiation itself. That is good news! It is the long-term effects that are troubling. And the effects are known to be the worst for children under 5, particularly under 2. The truth is radiologists don't like to do radiation on children so young - unless it's the only option - because they don't have much development behind them. Unfortunately, this IS the only option in Hayley's case. The "common" side effects include stunted growth, infertility, thyroid problems, cataracts and lowered IQ. Yes, many are treatable, but it doesn't lessen our heartache at "choosing" to subject her to them. The less common effects include reduced lung function, reduced kidney function, increased risk of heart disease, increased risk of secondary cancers. Yikes.

Whether she will experience all, none or some of the effects is unknown. The doctors are treating as best they know how; the healing and the long-term side effects are quite simply up to God. We pray that they will be non-existant/minimized with every ounce of our being. God has spared Hayley much in the past; we know He can do it again.

And oddly, our greatest hope and prayer is that tomorrow's spinal tap and bone marrow will allow us to move forward with the radiation treatment on Thursday- as horrible as the long-term side effects may or may not be. Without the radiation, there can be no transplant. Without the transplant, Hayley has a 2-3 month life expectancy. Period. End of story. As Dr. Haight reminded us, "Hayley obviously has an incredibly wicked form of AML." And compared to losing our daughter, the very worst side-effects seem like a walk in the park.

So, enough dwelling on today. Now, it's on to tomorrow. We head to Scottish Rite early for a platelet transfusion. The actual procedures will be at 1:45 p.m, and we expect to have results by 6 p.m. or so and will update asap. Please keep praying for NO CANCER! We are in believal for the very best.

Your prayers sustain us on this journey and we are eternally grateful,
Dayna, Alan & especially Hayley

Sunday, October 17, 2004

Things are going fine at home - tomorrow medical reality hits with our radiation consultation and "new" transplant consent forms. Please be praying for our mental and emotional strength as they delve into all the nasty statistics. Tomorrow should be an interesting update! And, of course, our big tests are Tuesday - we are ever aware as the day looms closer. Also, please be praying for our friend Will, who is in ICU with low blood pressure, just a few short days post transplant. His link is above. Thank you!


SATURDAY'S UPDATE
Shortly before 10:00 a.m., we pulled into the driveway with Hayley. Ah, how good it is to be home. And despite being here so little this year, Hayley definitely knows it's the place to be. She was saying "cat" by the time we pulled into the driveway!

Next week will be incredibly busy and stressful so we are trying to just relax and enjoy the unexpected gift of being home as much as possible. Please keep praying for Tuesday's bone marrow and spinal tap results. Those will be the tests that determine whether Hayley can have the transplant. It is likely to be the longest day of our lives as we wait for those results. Monday will also be rough as we consult with the radiation oncologist. Please pray for our sanity as we discuss all the possible complications and effects of treatment! We know God loves Hayley more than we do, and are clinging to that as best we know how.

Before closing out, I want to share a quick story with you...

We had been told (before the first transplant attempt) that everyone in our family needed to get a flu shot. Well, in short supply as the vaccine is, Alan spent 4 hours yesterday at Publix waiting for his shot. He struck up a conversation with the man standing directly in front of him, and can you believe it?? - the man was a bone marrow transplant/relapsed cancer survivor. But the story doesn't end there. Much like Hayley will have to endure, he had cranial and total body irradiation as well as a non-family donor. And, get this. Guess how he found out he had relapsed, prior to his transplant? His face stopped working!! (Sound familiar?? For those of you not familiar with her history, Hayley developed Bells Palsy from her first relapse). Two years past transplant, he is doing wonderfully. What a way to pass the waiting time, huh? No coincidence there. It was another ray of hope, direct from God.

Believing in miracles,
Dayna, Alan & especially Hayley

ps - Happy Birthday, Nana! We love you!

Friday, October 15, 2004

Well, the crazy schedule gets even crazier - but all for good reasons. We woke up to Hayley's counts, which had finally jumped to .58 (high enough to go home, if not for the pending scan on Monday). So, they managed to squeeze us in for a scan today at 3:00 p.m. Assuming it looks good, we will be able to head home late tonight or early tomorrow morning, after a routine blood transfusion! We are so excited.

With Monday freed up, we've moved our radiation consult to 10:00 a.m. on Monday. Tuesday remains the same - with the all-important bone marrow and spinal tap tests. Wednesday we do the radiation simulation to make the molds for Hayley's body, AND Thursday and Friday they will begin Hayley's central nervous system (CNS) radiation on an outpatient basis. Yikes! We are excited, exhilerated, and yes, scared to death! But God has been so faithful on this rollercoaster of a journey - and we can't wait to get on with the cure.

Then on Sunday, the 24th (one day earlier than we thought), we will be admitted for the rest of the pre-transplant preparation, with the transplant itself scheduled for November 1st!

Wow. It's like life is back on fast forward again. Please keep praying for Hayley's WBC count to rise (the higher her ability to fight infection going into transplant, the better). And of course, for NO cancer cells. Once again, we can count the days to transplant admission on our hands; the difference is...this time we ARE going to get there!

We are so thankful for your support!!
Dayna, Alan & especially Hayley

THURSDAY'S UPDATE:
Dr. Lew, Hayley's primary, came back from his trip all smiles at Hayley's progress. Although, her WBC count is only up to .36, she is definitely recovering...at last. And although her bone marrow biopsy from Tuesday also came back empty, no cancer cells is good news. To God be the glory!

Our tentative schedule for next week is a bit crazy, but looks something like this:

Monday, Hayley will have a catscan to ensure that she does not have any sort of fungal infection (The unexplained fevers a few weeks ago made this a possibility, and she's been on anti-fungal meds ever since. Assuming the scan comes back clear, and they think it will, we'll be able to drop that harsh medicine out of the mix).

Tuesday, Hayley will have a final?!? bone marrow aspiration and spinal tap. If all numbers remain at zero, we will be cleared for transplant admission (now targeted as the 25th). Please keep praying that she will recover ONLY healthy cells in her marrow & spinal fluid. Also on Tuesday, the GI doctors will be doing a scope, to see if they can pinpoint the source of Hayley's GI bleed last week. The same problem is likely to crop up during transplant so we want to know exactly what we're dealing with.

And Wednesday, we will at last have our meeting with the radiation oncologist. During this meeting, Hayley will most likely be sedated so they can go ahead and "fit" her for molds, which will be used to protect her lungs. We're still not exactly sure what the radiation plan is so please keep praying for wisdom for the doctors in deciding this critical piece.

WHEW. That will be 3 days in a row, where Hayley won't be able to eat, poor thing. But what a huge step it will be when we finally walk in the doors at Egleston (hopefully, on the 25th!). The doctors continue to remind us that we're in a race between the cancer's return and getting to transplant. But we know who's going to win, don't we?! God has brought us this far for a reason, we're sure.

Thank you for your faithful prayers,
Dayna, Alan & especially Hayley

Wednesday, October 13, 2004

Hayley's WBC count is up to .22, so we're moving upward ever so slowly. We need it over .5 to get a break at home, so please keep up those prayers!! We're anticipating having to stay through the weekend given the slow climb. Otherwise, a pretty routine day. Hayley's been a bit grumpy, but we're hoping that means her marrow is hard at work! Thanks for all your words of encouragement. They mean so much. More tomorrow...

TUESDAY'S UDPATE:
Waiting for test results, at times, is nothing short of excruciating! And then after hours, the doctor finally arrives at your door, and you have seconds to prepare for the news. Your world will either shatter around you once again or a few more pieces will fall into place on the journey to recovery. It is a tense few seconds, for sure. And for us, today's results were potentially life and death; transplant or no transplant.

Dr. B arrived at our door a few moments ago, AND we are happy to report good news.

1) Hayley's spinal fluid remains clear (Hallelujah!) AND
2) Her marrow has no cancer cells (Praise God) BUT.....

it's also still empty. So, we don't have a third remission YET. The waiting goes on. The bone marrow biopsy results should be back on Thursday - hopefully, they will be more telling. Dr. Bergsagel says with her counts where they are (only .17 today; the .45 on Monday appears to have been an error), this was the best news we could have hoped for. So, thank you so much for all your prayers.

The big prayer request right now remains RECOVERY - with only healthy cells. The sooner the better - we are so very ready to get on to transplant and Hayley's cure!

As a side note, yesterday marked our 150th day in the hospital since Hayley's diagnosis in February. I was hoping to set a LIFETIME limit for her of 200, but it's going to be cutting it close. The amazing thing when I think back at those 150 days is that out of all of them, we've probably only had 15 really bad ones. And that's pretty good, I think. God continues to hold us close.

Keep on praying!
Dayna, Alan & especially Hayley

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Monday, October 11, 2004

Alan and I were prepared to be disappointed by Hayley's white blood cell (WBC) count today. Ever since her GI bleed, they have been testing her blood levels twice a day instead of once - to ensure she doesn't require transfusions. And while Hayley's WBC was .11 at 4 a.m. yesterday, by 4 p.m., it had fallen back to 0. Quite the disappointment. So, we were prepared for the worst today. What a surprise to walk in to a WBC of .45!! That is an awesome jump for Hayley, who usually creeps and crawls her way to recovery. What an amazing answer to prayer!! I was pretty much skipping down the hospital hall.

Of course, her WBC at 4 p.m. was down from .45 to .15, so something must be causing her levels to fall in the afternoon - but .15 is still a jump up from 0, so if you compare the labs drawn each day at the respective times, she's still improving. We'll take it!

Because she's starting to show signs of recovery, tomorrow's bone marrow/spinal tap should yield critically important results. Please pray fervently that her spinal fluid will still be clear and that somehow, her bone marrow will show her in a THIRD remission! We should have some preliminary results by 6 p.m. or so, and will post as soon as possible.

Happy for today and hopeful for tomorrow!
Dayna, Alan & especially Hayley

ps - Please keep all of Hayley's friends in your prayers, but especially Jack W, who is showing mild signs of veno-occlusive disease following his transplant. We need his bilirubin to go DOWN. Thanks!

Sunday, October 10, 2004

Well, Hayley's gone two days (and nights!) in a row, feeling and looking great. Praise God! She's resumed strolling the halls, so we know she's finally feeling more like herself. She's also been taken completely off the IV nutrition since she's eating well on her own. Today brought possible good news in the form of her white count, which is up to .11 (normal is 6.0-11.0) We hope and pray to have a two-day upward trend tomorrow. Please keep praying for ALL healthy cells!! Tuesday's bone marrow could bring us the good news we've been waiting for...

Saturday, October 9, 2004

Dad checking in again -- Sorry for the late post tonight. We had a terrific day. No getting sick, and really no indications that Hayley was in any discomfort. The day started with her opening her beautiful eyes at around 7:45 and immediatly giving her favorite dog a drink from her sippy cup. Appropriately, it ended with her sharing her new favorite snack, Cheetos, with another of her doggies before snuggling up with Mommy. Incidently, she learned about Cheetos while roaming the halls with her buddy, Daniel, whose link is above. Some days it just hits home what a special little girl we have and what a terrific, perfect gift she continues to be.


FRIDAY'S UPDATE:
10/8 - Hayley had a really good day, playing and eating quite a bit. We are cutting her IV steak way back, and hope to have her off of it completely by the beginning of the week. She's a little bit grumpy - not completely certain of the cause. It may simply be cabin fever!!

Hayley is still getting fairly sick in the wee hours of the morning, which makes for long nights for Mom & Dad. (Hayley falls immediately back to sleep!!). Please pray for relief from whatever is causing her to feel so crummy. Also for recovery of all healthy cells - her white count is still at zero, so we're stuck inpatient for a while longer.

A special thank you to Oracle Corporation for participating in Atlanta's Light the Night Walk as "Team Hayley" tomorrow night. We are so honored! The Light The Night® Walk is The Leukemia & Lymphoma Society's nationwide evening walk to raise awareness of blood cancers and funds for cures. For more information or to donate online, visit http://www.lightthenight.org/hm_ltn

Keep up those wonderful prayers!
Dayna, Alan & especially Hayley

Thursday, October 7, 2004

Great news today...the bleeding appears to have stopped! After three transfusions (two blood and one platelet) yesterday evening, Hayley's body is back to normal in terms of being able to maintain her blood supply and heart rate. They won't let her platelets get as low as the typical cancer patient before transfusing again to try and prevent any recurrence. Other good news is that we've been fever free for several days now, so they're dropping one of her antibiotics out of the mix.

The bad news is that Hayley still has no white count. As a result, they're not going to subject her to the bone marrow test tomorrow - since it will likely yield the same "empty" result. We'll most likely reschedule the procedure for Tuesday. In the meantime, please pray for cell recovery with ZERO cancer cells in both her marrow and spinal fluid.

In terms of transplant, it's hard to predict a date right now. We were originally targeting the 18th, but that's only 10 days away, and Hayley still has zero white cells. It will be a delicate balancing act between her recovering enough counts to be healthy going into transplant and not waiting too long (for fear of relapse). We just pray that God will give the doctors wisdom to make the best decision possible.

We know your prayers will help make that happen!
Love to all,
Dayna, Alan & especially Hayley

"He gathers the lambs in his arms and holds them close to his heart." Isaiah 40:11


WEDNESDAY'S UPDATE:
At last, we have an answer to all of Hayley's crazy, sometimes painful symptoms. Extremely elevated heart rate, cramping when going to the bathroom, fast-dropping hemoglobin and platelets, severe vomiting (at times) and (finally today) a bloody stool EQUALS...... an upper GI bleed. Hayley is bleeding from either her esophogus, stomach or small intestine. Because of the vomiting, they suspect it's her stomach. But there's no way to know which without scoping her, and they are trying to avoid that for the time being. So, what do we do?

For now, she will be getting fairly frequent platelet and hemoglobin transfusions (possibly daily) to see if they can get it back under control. She received both today, and just getting the extra blood lowered her heart rate by 40 beats per minute! Hopefully, the platelets will help prevent the bleeding. She's also getting a much stronger antacid in her "steak" IV. I know this sounds alarming, but really, she's not anywhere near a critical stage. If she were, we'd be in the ICU. If the bleeding becomes more of an issue in the next day or so, they'll go ahead and do the scope. We hope and pray she won't have to do that.

So, while we're by no means happy that she has an internal bleed, we are thrilled beyond words to know that her heart is A-ok. They did an EKG and echocardiogram this morning to make sure. What a relief! Also, the bleed really won't have any effect on our transplant plans, also a relief!! And unbelievable as it sounds, with the exception of going to the bathroom, Hayley was generally in a happy, playful mood today. Praise God!

We ask your specific prayers for healing of Hayley's bleed -wherever it is and for her comfort during this time! And also for a rising white count (it was back to zero today). Her own white cells will really be her best medicine in healing these internal issues. Somehow, I'm starting to doubt we'll be getting that break at home before transplant, but hey, no one said the road to the cure would be easy.

Happy to have some ANSWERS!!
Dayna, Alan & especially Hayley

Wednesday October 6, 2004

*New pictures 10/5
10/6, 9:50 A.M.
Dad checking in -- last night was a long night. Oftentimes it is hard to believe how sick our little girl is, because she does so well with her treatments. Last night was not one of those nights :(. As a result of all the "stuff" going into her body, particularly the anti-fungal meds, she was not feeling well and was sick most of the night.

The good news was that while her heartrate was elevated, she remained fever free with normal blood pressure readings.

Today we pray that these anti-biotics and anti-fungals efficiently / fiercely battle whatever could be causing Hayley's fevers with limited side effects. We are grateful you are all here to pray with us on behalf of our beautiful little girl.

Dayna will be updating todays events later this afternoon.

10/5
Today was definitely a better day. Hayley's heart rate is still averaging 20 beats above her normal, but it's nowhere near the dangerous range it was yesterday, and her blood pressure has stabilized. We are so thankful! We've been in ICU once, and it's not really an experience we want to repeat!

In spite of the elevated heart rate and low-grade fevers, Hayley was fairly playful and even got out of bed to walk a bit. That said, cuddling and watching Barney remain her top priority activities right now. They've got her on 3 antibiotics and 1 antifungal medicine (mostly as a precaution) to try and get at whatever might be causing the fevers. So far, all her cultures have come back normal. The best news today is that her white count was up to .13 (not much, but it's above ZERO!). We hope to see a steady upward trend throughout the rest of the week.

We can hardly believe we're looking at a possible transplant admission in LESS than two weeks. Of course, many pieces will have to fall into place before that - we still need rising counts and for Hayley's marrow and spinal fluid to stay free of leukemia cells. They will be testing again this Friday. Please keep praying for those zeros!!

One thing is for sure - we don't know how many more dives and turns we are going to take on this journey; but we still have complete confidence that the final outcome will bring us one healthy, cancer-free daughter. God seems to give us just enough grace and strength for each day as it comes - and we are so very thankful for that.

Thank you for your ceaseless prayers,
Dayna, Alan & especially Hayley

Monday, October 4, 2004

We really need your prayers today. Hayley is nothing if not unpredictable. When Hayley awoke from her mid-day nap, her heart rate was racing at 220 beats per minute, and her blood pressure was pretty low. She was quickly hooked up to many monitors, given extra fluids, and a special antibiotic. It was a very scary 20 minutes, and almost earned us a trip to ICU. Fortunately, her heart rate seems to have stabilized now, and they think the reaction may have been due to a new drug she was given before her nap. But they're drawing blood cultures, of course, to see what she might be fighting.

The doctors are also adding another antibiotic and antifungal drug to her medicine mix (she has still been trying to spike a fever), so hopefully that will get any infection back under control. She will also receive a blood transfusion later today.

Please pray for Hayley's comfort and strength, and for rising counts so Hayley's body can help in the fight!

Sunday, October 3, 2004

Hayley seems to have turned a corner today! Her counts are still zero, but her fever finally seems to have really disappeared. She was up walking around quite a bit today, playing and talking, and even eating a little. She still gets tired pretty easily, but it's nice to see a semblance of her former self.

We are hopeful that her white count will begin to rise in the next day or so, so we can get a break at home before transplant. Right now, with Hayley's counts bottomed out, we'll probably be in-patient at least through Thursday or Friday.

Hopefully, we can spend the majority of the next few days playing and starting to get her weaned off the IV "steak" and antibiotics. Please keep praying that the fevers stay at bay.

Thank you for loving our little girl and keeping her faithfully in your prayers!!
Dayna, Alan & Hayley

Saturday, October 2, 2004

Hayley enjoyed helping Grammie (my Mom) celebrate her birthday today! The best part was opening presents, for sure. We know Grammie's only wish is for a healthy grandaughter, and we are praying that she gets her wish next year!

Hayley had ups and downs throughout the day, but is generally still feeling pretty crummy. She spiked another fever last night, which was probably due to the spinal tap, and is now somewhat under control. Please pray that she doesn't spike again, as that will necessitate even harsher antibiotics and antifungal medicines.

The doctors think her counts should begin to rise in the next few days. Please keep praying for this - we are ready!!

Love to all,
Dayna, Alan & especially Hayley

FRIDAY'S UPDATE:
Just a quick note to let you know the bone marrow appears to be empty (no good cells, but no bad ones either). They are sending out for a more detailed test - results expected Monday. All in all, we couldn't have asked for a better report today!
_____________________
We're still waiting on the bone marrow results, but I couldn't wait another second to tell you the most glorious news I've ever heard...

Hayley's spinal fluid had ZERO cells!! And that makes two in a row! Thank you, Jesus! I just cried with relief, knowing this means NO more chemo spinal treatments until transplant.

At the moment, they are tentatively talking about being admitted for transplant on or around October 18th. I know some of you are wondering why in the world we have to wait, but they can't do any radiation within two weeks of her last spinal tap. So, we just need to pray fervently that her spinal fluid and marrow can stay clean for the next 2-3 weeks until we get to transplant. I know last time, you all probably thought we were crazy to mention she could relapse in so short of a time. Now, we know all too well that it IS possible, so we just have to pray extra hard that she doesn't!

I hope to have news on the marrow later tonight. The probable result is that the marrow will be empty - but as long as there are no cancer cells, that is where we want to be. If for some reason there is cancer, I'm not sure what the next step is. Hopefully, that won't be an issue.

Please also keep praying for Hayley's strength and spirit. They started her IV nutrition (steak in a bag!) last night so we hope it will give her more energy. She's still feeling pretty awful, and I'm thankful we have this good news to carry us through her low points over the next few days. They don't think she'll really feel better until her counts begin to recover...please pray that they start to rise SOON.

There are no words to thank you for your prayers. We're so thankful you're sharing the road to our miracle. As one of the nurses just told me, "Hayley's going to have quite a story to tell!" Amen to that!!

Love to all,
Dayna, Alan & especially Hayley

Thursday, September 30, 2004

Today was much the same...a lot of cuddling and resting! Hayley did actually want "out" of the room, so she seems to be perking up a bit. All of her blood cultures continue to be negative, which is great. Unfortunately, she still hasn't eaten anything since Sunday so she may be given some IV nutrition starting tomorrow to get her protein up to normal levels. If it gives her more energy, that's A-ok with us! As hard as it is to see Hayley feeling so badly, the nurses continually remind us that many children are like this ALL the time. How blessed we feel that this isn't her "norm."

Hayley's spinal tap and bone marrow tests are scheduled for noon tomorrow. We should have some form of results by the end of the day. Please, please keep praying for all zeros!! God has brought us so far on this journey; we know He can do the rest!!

Wednesday, September 29, 2004

Our good news for today is that all of Hayley's blood cultures are coming back negative (she doesn't seem to be fighting a major infection) and she's been fever free all day. The downside? The doctors definitely think it's the spinal taps making her feel so miserable - and there's really nothing they can do to help it! So, please, please keep praying that Friday will show zero leukemia cells. If so, Friday will be her last spinal chemo, and she should feel back to normal sometime next week.

Hayley did seem slightly better today than yesterday. She colored a few pictures, talked a little and actually got out of bed once! (Granted, it's not much, but it's better than yesterday!)

Because she's feeling so bad and because her counts are at zero, they are keeping us in the hospital until Hayley's counts recover. Unfortunately, since we're well off the beaten treatment path now, they're not sure how long that will take. (Does this sound familiar, anyone!?) She continues to get neupogen, the white cell stimulant, so we're hoping she'll recover by late this week or early next. Friday's bone marrow may provide an early glimpse of what's going on.

We appreciate your continued prayers for ALL ZEROS on Friday!!

Dayna, Alan & especially Hayley

Tuesday, September 28, 2004

Greetings from Scottish Rite! I'm happy to report that Hayley's fever is at least under control, still hovering above normal, but barely. Unfortunately, she still feels pretty lousy, content to sleep on and off most of the day, with an occasional bout of sickness in the middle. Please keep praying for a repeat zero in her spinal fluid this Friday so we can stop these spinal treatments and get her feeling back to normal. We want to see her up and running around before transplant!

Because we're in the hospital, our meeting with radiology tomorrow has been postponed until sometime next week. We're a little disappointed, but hey, we weren't really looking forward to that meeting anyway!

Still so happy about yesterday's results and praising God for bringing us this far!! We ask your prayers that Hayley perks up soon - it's fun to snuggle for a day or so, but we're missing our busy little girl!! Also for CLEAN marrow and spinal fluid on Friday.

Love to all,
Dayna, Alan & Hayley

"Why so downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God" Psalm 42:5

Monday, September 27, 2004

MIDNIGHT:
Hayley spiked a fever of 102 at 9:00 p.m., so we've managed to land ourselves back at Scottish Rite. Hayley's immune system is bottomed out right now so she has nothing to fight off infection other than the antibiotics they've started. Please pray that they do the trick and that her fever drops quickly. Thanks!

6:00 p.m.
Zero. Zip. Zilch. Nada. None. That's how many white cells Hayley has left in her spinal fluid! Hallelujah! God is good, indeed. We feel so blessed to have crossed this first major hurdle. That ray of hope is getting bigger and bigger.

We actually just walked in after a long day at the clinic. Hayley's hemoglobin wasn't critically low, but because she was feeling so crummy, they went ahead and gave her a transfusion to hopefully boost her back to normal. Dr. Lew is convinced her "mellowness" is due to an impending fever, but hopefully, we can manage to keep that at bay. So far, so good.

Barring any fevers, here are the big milestones for this week:

Wednesday, all three of us will meet with the radiologist for the first time to discuss Hayley's pre-transplant treatment plan, short and long-term side effects. It is bound to be emotionally draining as we hear everything that might possibly "go wrong." Please pray for our sanity and wisdom for the doctors in determining the best treatment course.

Friday will be the biggest day of all, when we again check her spinal fluid, but also check her bone marrow for cancer cells. We're looking for zeros on both - another zero on her spinal fluid in order to stop those difficult treatments and a zero in her marrow to get us on to transplant.

Please keep up those powerful prayers. We see them working every day.

Dayna, Alan & especially Hayley

Sunday, September 26, 2004

The day started out routinely enough, but ended up with a quick trip to the emergency room. Hayley had not gone to the bathroom much since Friday, so we were concerned that her bladder and/or kidneys might have been impacted by the chemo. The doctors asked us to come on in just to make sure everything was ok. Wouldn't you know she soaked her diaper during the car drive?!?!. Thank goodness she didn't have to spend much time in the ER!

Hayley's been very lethargic today, so we expect her hemoglobin has dropped pretty low and that she'll need a blood transfusion tomorrow. It could be a LONG day at the clinic. Tomorrow also brings her fourth spinal tap / interthecal chemo since relapse - please keep praying for ZERO!! Once again, we should get results by mid-afternoon and will post as soon as possible.

Thanks for your ever faithful prayers!
Dayna, Alan & especially Hayley

Saturday, September 25, 2004

* New photos 9/25

The triple chemo spinal taps seem to be hitting Hayley pretty hard. She feels crummy on and off throughout the day, but is still managing to enjoy her time at home. Please pray that she feels back to 100 percent before getting whallopped again with her next spinal chemo on Monday. Her ANC, ability to fight infection, is close to zero now, so we're ever mindful to watch for fevers. Mom is playing nurse again, administering IV neupogen (a white cell stimulant) at home once a day, in the hopes of getting her cells back up to normal more quickly. We hope to see her marrow producing all healthy cells later this week! Thanks for your continued prayers!! They are our very best medicine!

FRIDAY'S UPDATE
We can now count the white blood cells in Hayley's spinal fluid on one hand...

...one, two, three, FOUR! That's it. FOUR!!

No it's not zero (YET!), but we've sure come a long way from being well over 1000 cells per microliter. Thank you, Lord!! The doctors say they're ecstatic, and so are we! :)

Monday will be the next test of Hayley's spinal fluid, and we're praying for and fully expecting a zero then.

Hayley continues to feel great, although she surprised everyone last night by getting REALLY sick all over the kitchen floor. For those of you unfamiliar with Hayley's history, she has had eight rounds of INTENSE chemo, four of those rounds, the harshest there is short of pre-transplant. Yet, she has only thrown-up twice. EVER. A miracle in and of itself. Dr. Lew half-jokingly said on Tuesday, "the day Hayley gets sick, we'll know she's cured!" A strange comment, I guess, but the doctors feel that Hayley's lack of sickness has been our greatest blessing and our greatest curse. A blessing that she's had a relatively easy time of it; a curse that the cancer seems to have gotten off easy too.

So, last night, we hated to see Hayley sick, but at the same time, we loved it. We all pronounced with smiles, "she's cured."

Ahh...if only it were that easy.

No doubt, there is a long road ahead, but every day of progress is a great one. And the past two days have been full of "progress" indeed.

Keep on praying!
Dayna, Alan & Hayley

Thursday, September 23, 2004

Hayley continues to feel great at home, full of smiles and energy. Other than her super short hair-do, you would never even know she's sick! Amazing! We managed to avoid any transfusions today - her hemoglobin and platelets are dropping, but not too quickly. So, we were thankful to spend the day at home instead of endless hours at the clinic.

Tomorrow brings another check of her spinal fluid - please keep praying for ZERO!! We will have results by mid-afternoon and will post asap! Thank you for your constant support, encouragement and prayers.

Enjoying every second at home,
Dayna, Alan & especially Hayley

WEDNESDAY'S UPDATE
We’re home!! And we are thoroughly enjoying our one day off from “medical” appointments this week! Hayley slept in her crib all night without a fuss, and woke up her usual happy self this morning (I am so thankful that the steroids get out of her system quickly!) She has been a ball of energy, running from one toy and cat to the next. No exaggeration, she has said the words “Nana,” “cat,” and “dog” at least 500 times each today. That’s our girl!

Hayley’s counts will continue to decline over the next 7-10 days. Her ANC (white cells that fight infection) will reach zero sometime next week so we will be diligently watching for any sign of fever. If she has a fever of 101, we have to head back to the hospital for high-dose antibiotics. Most likely, this will happen, so we plan to enjoy each day at home as much as possible.

Tomorrow brings a visit from home health, blood counts, and possibly transfusions at the clinic in the afternoon.

We are thrilled with Hayley’s improving spinal fluid numbers yesterday (Yea God!!), but we still have a LONG way to go before we’re even a candidate for transplant again. So, what has to happen?

1) Her spinal fluid must clear COMPLETELY. Zero leukemia cells. We’ll check this again Friday to see where we’re at. Based on yesterday’s results, we really believe this is one hurdle we can overcome.

2) Hayley’s bone marrow has to show decreased leukemia cells as well. She relapsed in her bone marrow at about 20 percent. We need to see this number lowered – ideally also at zero. Unfortunately, her counts have to bottom out and then begin their re-bound before we can test. This won’t happen until late next week at the earliest so 10/1 will be her first bone marrow aspiration for this round. It is entirely possible that the leukemia will come ROARING back in her marrow. Please pray, instead, that she will go so far as to achieve remission again. We will go to transplant if there is even mild improvement, but the truth is, not being in remission prior to transplant will cut her survival statistics in half (and the statistics already STINK!)

So, those are the biggest hurdles before us. They are NOT insurmountable, not with God and all of our prayer warriors behind us.

We thank God for each of you and the support you show us!

Dayna, Alan & especially Hayley

Tuesday, September 21, 2004

I know you're all anxious to hear the results of the spinal tap, and I am happy to have good news to report at last. Hayley had more than 1000 leukemia cells per microliter at relapse...she is now down to roughly 150 after one treatment! Praise God - we are so thankful for this small ray of hope. The doctors, too, said they're very, very excited! Of course, we still need it to go to ZERO, but at least it's heading the right direction and rapidly. Friday will be her next interthecal/spinal tap to see where we're at. Please keep praying for ZERO!! Also, for destruction of the remaining cancer cells in her bone marrow.

The good news came at the end of a long, exhausting day. Hayley was not only on steroids, but couldn't eat or drink until 2 p.m. Not a good combination!! Her last steroid dose is tonight, and we'll look forward to having our happy girl back by mid-day tomorrow.

Thank you so much for your prayers - they are working!

With happy, hopeful hearts,
Dayna, Alan & Hayley

Monday, September 20, 2004

One day left to go on this chemo treatment! Hayley's doing great, with the expected steroid grumpiness, but overall, continues to tolerate everything beautifully. Her chemo wraps up tomorrow morning, but we won't be discharged until close to 6:30 p.m., due to "rescue" drugs she receives for her bladder. It will be so nice to sleep in our own beds again!

Tomorrow is HUGE for other reasons as well. We will find out how well her spinal fluid is responding to the chemo, when she gets her spinal tap at 12:30 p.m. We should have the results by mid-afternoon, and will update as soon as we hear. You might remember she was at 1,000 leukemia cells per microliter. Please be praying that this number has been drastically reduced.

We were blessed by a special visit from Maddie's parents tonight. What amazing people to reach out to us in the midst of their own, still fresh loss. Please keep this sweet family in your prayers as they resume life as a two-some. Also, for Little Jack, who began his second high-dose chemo treatment today, and who took time out over the weekend to deliver a special "Moo Moo" to Hayley. God's grace and a "Moo Moo!" What could be better? To the women who call themselves, "Allie's Angels," there are no words to express our thanks for how you've "adopted" our daughter. Wow.

And to all of you who love our daughter so fiercely and who pray so faithfully for her recovery, who sustain us with meals, who take care of our yard, and who encourage us with notes and gifts...THANK YOU. Never have we witnessed the sheer goodness in people as we have during this journey. We are indeed so very blessed.

With hope for good news tomorrow,
Dayna, Alan and especially Hayley

Sunday, September 19, 2004

Today was a pretty routine day at the AFLAC center...Hayley continues to tolerate the chemo well other than general crankiness. They've actually been able to move her chemo up four hours a day, so we should be released mid-day on Tuesday. How's that for good news?! The next big milestone is Tuesday's spinal tap/chemo injection. We need to see significant reduction of the leukemia in her spinal fluid. (She relapsed at 1000 cells per microliter. Anything over 5 is relapse, and we need to get it down to ZERO over the course of the next 2-3 weeks). Please keep up those prayers! Each day we grow more confident that she CAN and WILL beat this disease.

Know that even though we can't always respond, we receive every one of your messages and are so encouraged by them. We are overwhelmed by the caring and compassion of friends and strangers alike.

Love to all,
Dayna, Alan & especially Hayley

SATURDAY'S UPDATE
Today was a much better day. The shock of this lightning quick relapse is beginning to wear off, and the fight is on! Hayley's steroid alter-ego has emerged, and though she's quite grumpy, she has handled the rest of the chemo with her usual resilience. Her counts have already begun their steady decline.

The doctors were much less "doom and gloom" today. They have emphasized that the key for our transplant hopes is clearing her spinal fluid. They will check it again on Tuesday, at which point, they hope to see a drastic reduction. Please be praying for this. If we can clear her spinal fluid, we can go to transplant even if her marrow isn't in perfect remission. A perfect remission would be ideal, but as long as they see an "improvement" in her marrow, we're going. She desperately needs those donor cells. So, clearing the spinal fluid is key. She will have 'taps' every Tuesday and Friday until that happens. The doctors are also saying we can probably go home Wednesday and just come back if Hayley gets a fever. Ironically, this could be one of our shortest stays.

A very wise man told us today to let go of the fear. Fear of the future will simply rob of us of our ability to enjoy today. Fear will prevent us from being fully present in the wonder of God's plan for sweet Hayley. So, we are letting go of the fear as best we know how. We are rolling with the punches and enjoying the marvel that is our daughter.

With hope and believal!!
Dayna, Alan & Hayley

"So do not fear, for I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Isaiah 41:10

Friday, September 17, 2004

Emotionally, it was a very painful day. There was one major positive, so I guess I'll start off with that.

Hayley is no longer getting the cardio-toxic drug in her chemo mix. One of the national AML experts came up with a protocol, pretty much at the last minute, that does not use those particular drugs. It's commonly called "ICE" (Ifosfamide, Carboplatin & Etoposide). It is actually more commonly used with solid tumors, but for AML relapse has the same potential success rate as the cardio-toxic combo. Because Hayley's only medical chance for cure is now transplant with radiation (also hard on the heart), "ICE" was more appealing. Of course, there are trade-offs. Now at risk are her hearing, bladder and kidneys. Again, we ask you to pray for protection for all her major organs.

In addition, she is being given high-dose Decadron (a steroid) and the "triple" chemo to her spinal fluid twice a week. They hope to see the leukemic cells in Hayley's spinal fluid significantly decrease by next Tuesday.

We were given the option at least three times today of crying "uncle," and just going to maintenance chemo, which would give Hayley a life expectancy of roughly 2-3 months. We declined the offer. If she had had horrible reactions to chemo in the past or had especially prolonged suffering, it would have been a much harder decision to make. Dr. Lew was so sweet. He said he didn't know if it was his head or his heart talking, but he told us, "I really think in my gut that she can do this. She's handled everything in the past so beautifully there's no reason not to try. We need a little help from God, but she can do it."

From a pessimistic oncology doctor, those were beautiful words to hear.

The hard fact remains that this is pretty much our last chance, medically speaking, to get this thing. It's also hard to accept that Hayley will have to have a good bit of radiation to have any chance at long-term survival. The potential long-term effects of radiation are particularly troubling for kids under 5, much less under 2. And yet, Hayley has been spared so much in the past - there's no reason she can't be spared the worst of that too. We hope to meet with a radiologist to get the full story soon - please pray for wisdom in our decision making.

There are many "pictures" of the day I wish I could tell you about - some happy and some sad. Hayley happily playing hide n seek in the clinic while waiting for her spinal tap. Hamming it up for the videographer, shooting footage for the AFLAC center. How she bounced on the bed and made circles with her hands as Barney sang "Wheels on the Bus." The pain of the spinal tap because she's built up resistance to some of the relievers they use. And then there's the moment when I lost it. When Earl, the kind man who buffs the floors outside the cancer hall, saw me for the first time. He hung his head with a pained look, and just said, "I'm so sorry, Dayna." I don't know if it was the fact that he knew my first name (you know we've been there a lot when not only the nurses, but half the hospital calls you by name). I don't know if it was the genuine pain in his eyes that showed me how much he cared. I don't know what it was, but the well of emotions erupted. We are somehow hanging on to hope and faith (or clutching it, rather), but it's painfully hard.

Please pray fervently that this regimen and transplant will be God's healing for Hayley. And thank you for all your sweet messages and e-mails. We read them many times today, and they do give us encouragement. One day, Hayley will marvel at how many people were rooting for her.
Hope remains,
Dayna, Alan & Hayley

Thursday, September 16, 2004

FRIDAY morning:
We had a long and tearful night to reflect on things. For once, I was glad to pack for the hospital simply for something to do. This is definitely another major blow, but we are still believing in God's most magnificent plan. Right now, we think the plan pretty well stinks, but one day when we get to ask the big, "WHY?," we know we're going to get an awesome, glorious answer. In the meantime, we're plugging along as best we know how.
If there is anything to be thankful for in this awful circumstance, it's that we caught it. I've always believed that God works in mysterious ways, and having the radiologist "cancel" our appointment may have been one of them. If we'd had the appointment, we may not have done a spinal tap. If we had gone to transplant with Hayley relapsed in her spinal fluid, the results would pretty much have been deadly. Nothing in her preprative regimen would have addressed her spinal fluid. There wouldn't have been much left to do by the time it was discovered. So, we caught it. Praise God for that!

Hayley's cancer has proven to be wickedly smart and sneaky. First it built resistance to initial drugs. Then it hid in her skin. When we blasted her bone marrow and skin, it went to hide in her spinal fluid. Well, this time, there really won't be anywhere left to hide. We will be going after it with loaded guns. There may be costs - we hope and pray they won't be too high.

Obviously, one of those costs is her heart. I wanted to clarify what I meant by "cardio-toxic" drugs. There are certain drugs (in the anthrocycline family) that you can only safely have a liftetime dose of without risking damage to the heart. Hayley had whopping doses of daunorubicin (one of those drugs) in her initial four rounds of chemo. Now, we are going to be using idarubicin, a distant and more potent cousin, to blast her marrow back to remission. This dose will push her past the recommended lifetime limit. So, what does that mean? Well, probably nothing in the short-term. What it may mean 10 years down the road, is that her heart will give out and she'll have to have a heart transplant. We hope to have to worry about that. Similarly, Hayley will have to receive spinal taps of mega-chemo twice weekly until her spinal fluid clears. Please pray that we will clear it QUICKLY so we don't increase her risk of cranial and spinal nerve damage. Obviously, we're once again hoping to get through this without major side effects, and as tough as Hayley's organs have shown themselves to be, it wouldn't surprise me if she's able to do just that. Dr. Haight actually said yesterday (when we thought we were going to transplant) that she had never seen anyone's organs and blood chemistries look so great coming in. See what I mean - mysterious ways.

So, all this to say...Please don't give up on Hayley. Please don't give up on God's ability to heal her. We head back to battle today, determined to win. A friend recently reminded me of the old hymn lyrics..

"Onward Christian soldiers, marching as to war, With the cross of Jesus going on before. Christ, the royal Master, leads against the foe, Forward into battle, see his banners go!..."

Please keep praying and marching forward with us.

Dayna, Alan & Hayley

THURSDAY'S ENTRY
This is not the entry I was hoping to make today. As unbelievable as it is to us, Hayley has relapsed in her spinal fluid, and less so in her bone marrow. The transplant is off (for now). We will be admitted to Scottish Rite tomorrow for a spinal fluid injection as well as another 5-day round of chemo. She WILL be getting cardio-toxic drugs. Please pray for protection for her heart and also that this round will be the one to do the trick. We are still in believal - we just wonder how much we have to stand before we get to Hayley's cure.
Brokenhearted,
Dayna, Alan & Hayley

Wednesday, September 15, 2004

God was very merciful with our morning - I think he knew I would need my sanity for the afternoon! The dentist appointment was almost a non-event. They didn't do anything crazy (as I had feared)- no mouth x-rays, but instead just checked the enamel on Hayley's teeth and made sure her gums weren't irritated - which took a total of about 90 seconds. She hated it, but it was quick! The dentist really spent the rest of the time talking to me about pre- and post-transplant care and possible long-term dental side-effects. All in all, an easy trip. Then, by the grace of God, Hayley took a nap at 10:30 (normally, she refuses to sleep until 1 p.m.) so she was rested as we headed back to the hospital for our 1:00 MRI appointment.

Then the fun began.

MRI did not have us on their schedule.

Turns out, the radiologist decided it was too soon to do a follow-up MRI and canceled our appointment without telling either Dr. Lew or us! And of course, the radiologist didn't realize that we were being admitted for a bmt next week and that we needed results ASAP. It was a big mess, and we did NOT get our MRI.

Right now, we have a Friday MRI appointment. Unfortunately, that doesn't give us much time to do a spinal tap and bone marrow if things still look questionable SO we now have a spinal tap/bone marrow aspiration scheduled for tomorrow at noon at Scottish Rite. We have an 8:30 appointment at Egleston before that to drop off our consent forms and go over last minute questions. Why all the crammed appointments? Because they are now talking about admitting us SUNDAY!! We feel like after months of waiting, someone has hit the fast forward button on our lives.

So, with all that, our BIG, HUGE, ENORMOUS prayer request is that the spinal tap comes back clear tomorrow. We should have results tomorrow evening. (Remember, the "questionable spots" on her MRI could be cancer, and the spinal tap should show that). If for some reason, there is cancer in her spinal fluid, we will most certainly have to do radiation (a whole different ball game with consents) and our admission will be on hold. Please, please, please pray that this won't happen. It would be completely devastating. The doctors THINK everything is ok, but we haven't tested her spinal fluid in quite some time.

Thank you for your faithful prayers. We couldn't get through this without them!!
Dayna, Alan & ESPECIALLY Hayley

ps - Please also remember Carmel in your prayers. She is more than 100 days post-transplant, but with a still suppressed immune system, Carmel has come down with shingles. She's not in any serious danger, but it can be quite painful. Thank you!

Tuesday, September 14, 2004

God never ceases to amaze me. I failed to mention yesterday that, even without the results of one blood test, Eggleston went ahead and forwarded all the transplant paperwork they had to our insurance company for approval. We have been told many times to expect an average 10-day turn-around (hence, the 9/27 admit date). Well, today, our Blue Cross/Blue Shield case manager called, and Hayley's transplant has already been approved -less than 24 hours later! We are so thankful. Now, the primary things standing between us and an earlier admit date are the second MRI results, that final blood test result and room availability at Eggleston. Room availability is likely to be the biggest of the obstacles as there are only eight rooms on the transplant hall!

Tomorrow will be a crazy day. We have a pediatric dentist appointment, another pre-transplant requirement, first thing in the morning. It is beyond me how they're going to examine a 19-month-old's mouth without everyone losing their minds, but I'm sure God will work that one out too. We are sure dreading it, though. Later that afternoon, at 2:00 p.m., we have our follow-up MRI. Hayley can't eat for 6 hours beforehand as she will have to be sedated again. Thankfully, I think we can squeeze in breakfast before the dentist. Phew. We're exhausted just thinking about it, but afterwards, we'll be one step closer to Hayley's cure. Please pray that the MRI will turn out just perfect.

Thank you for continuing to keep Hayley in your heart and prayers!
Dayna, Alan & especially Hayley

ps - Check out pictures of Hayley's smile in the photo album. First picture taken a few days ago; second picture taken shortly after relapse. Can you believe the difference? Still have some forehead movement to go, but WOW!

Monday, September 13, 2004

5:00 p.m.
Well, the head neuro-radiologist checked out Hayley's MRI pictures, and...

...She thinks everything is fine!

Praise God! The granulation could definitely be consistent with either irritation from the chemo or healing of the nerve. Also, the spots where they saw the granulation were NOT the same spots the initial cancer nodules were, (which would be the more likely scenerio if she had relapsed). So, that is all great news. HOWEVER, (you knew there would be one), they do want to repeat an MRI sometime this week just to be on the safe side. Not sure when this will be scheduled yet, but please keep praying that Hayley is still truly in remission and that whatever this granulation is, it will DISAPPEAR! Thank you, as always!!

Praying for the Martins,
Dayna, Alan & Hayley

___________________________________

10:00 a.m.
We are still waiting to hear from the radiologist, but wanted to let everyone know that seven year-old Carter Martin went home to heaven last night. At last, his battle with cancer is over. We never had the pleasure of meeting Carter in person, but know he has touched many, many lives - including ours. Please pray for comfort for his parents and brother, Candler, as they deal with this horrific loss.

SUNDAY'S UPDATE
It's been a great, normal weekend for the Thomsons. Mom & Dad even got out to play tennis! We have also been fairly successfully at not worrying about the MRI results. That said, we are eager for the neuroradiologist's opinon -which we should get tomorrow.

Hayley looks and feels great. Her face is really healing, and she's getting back some healthy color. Her hair is also really growing back. Soon to fall out again, of course, but we're enjoying it while it's here.

Our biggest challenge with Hayley right now is getting her to wear a mask, a transplant requirement. We haven't gotten one on her yet, but she'll at least let Alan & I wear one now. The first two days, she yelled "no" everytime we put one near our face. Slow, but steady progress.

We are ever thankful for your prayers. Please don't let up!!

Enjoying our "normalcy",
Dayna, Alan & Hayley

Friday, September 10, 2004

We've got the results from Hayley's MRI already. I wish I could tell you they simply said, "all clear," but there's always something isn't there?!?

The exact words of the radiologist were that Hayley had some "granulation of her facial nerve." So, what the heck does that mean? Well, it COULD mean there's residual leukemia in her middle ear, although we certainly hope and pray that's not the case. Fortunately, Hayley still having leukemia is NOT consistent with the way her face has healed. The more probable (in our opinion) explanation is that the granulation is due to scar tissue/healing of the nerve. So, what now? Well, the neuroradiologist who is familiar with Hayley's case was out, but will return Monday to render her opinion. If there is any question about whether or not it's cancer on Monday, we're looking at a repeat MRI and bone marrow test next week. So, one more thing to wait and worry over! Actually, we truly believe this one is going to pan out ok - believal, again!! But your prayers for continued remission are needed more than ever.

In good news, Hayley's peripheral blood counts are recovering ever so slowly, and continue to be all healthy cells. Praise God for that! And Mom got to visit with some of Hayley's favorite in-patient nurses during the MRI - all were happy to hear of Hayley's progress. We were also told she's already made quite an impression at Eggleston! The docs at Scottish Rite are getting worried that Eggleston is going to try and steal her as a patient. Just wait til Eggleston sees Hayley on steroids, though - they'll change their minds in a hurry! :) In all seriousness, it's comforting to know she's loved by so many.

Thank you for those prayers. We still need them so very much.

Love,
Dayna, Alan & especially Hayley

Thursday, September 9, 2004

Today marks two months since we found out Hayley relapsed. It seems like we've lived several lifetimes since then, fortunately with good news of late! Tomorrow we go in for an early MRI and then labs at Scottish Rite. The main purpose of the MRI is to ensure that the nodules which caused Hayley's facial palsy have not returned now that her marrow is recovering. Since she's in remission, there's no reason to think she won't have a perfectly clean scan, but your prayers are appreciated as always. No results from our tests at Eggleston, but no news on those tests is good news! Thanks to all for the encouraging notes in the guestbook. They sure keep us smiling through the hard stuff.

WEDNESDAY'S UPDATE:
What a day!! We began our trek to the Eggleston campus at 6:45 a.m. this morning, barely arriving in time for our 8 a.m. appointment. But it was pretty much smooth sailing from there. Hayley was a champ through all her tests and bloodwork. She was a bit nervous with all the new people at first, but by the end of the day, she was laughing and playing with each new person that entered the room. She even let Dr. Haight check her ears without a fuss.

There were some hard parts, too, no doubt. We got the official "rules," which can be a bit daunting. For those of you unfamiliar with transplant, here's a sampling:

* No visitors under sixteen
* Only ONE stuffed animal allowed (I think we managed to get permission for two...but still pretty restrictive for a 19 month old)
* Mask must be worn anytime Hayley's not in her room or the bmt playroom (We will have to be practicing this at home, for sure!)
* Must walk 10 laps around the nurses station each day (with mask!) to exercise legs and lungs
* Mouth care 4 times a day to help prevent /ease mouth sores
* Weight checks at 8 a.m. and 8 p.m. sharp each day
* No fresh fruit, veggies or take out for 100 days

YIKES!! And of course, we went over all the nasty side effects of the chemo and the consent forms. I won't even get into all of that now, but this will definitely be the harshest chemo she's ever had. Feeding tubes, mouth sores and severe nausea are almost all "requirements".

One prayer request beyond our ususal stay in remission and great test results cropped up today...our transplant date. Our admission date is still up in the air. We're hoping for the 19th/20th, but it could be as late as the 27th due to turnaround times on insurance. Please pray that everything will fall quickly into place so we can get Hayley to her cure all the faster.

On to some highlights of the day...

Every single staff member we met couldn't have been more friendly. And the set-up of the bmt area at Egelston is surprisingly homey. We'll be in great hands, for sure. We also got to see both Carmel and Little Jack briefly. Both looked wonderful - even behind their green masks! And the biggest blessing for us was Hayley's disposition for the day. She spent most of it smiling, laughing and even dancing! Really, the day went as well as we could possibly have imagined. Thank you for those prayers.

One quick story before we wrap up. The sweetest and saddest moment of the day came at exactly the same time. The nurses had to insert an IV into Hayley's hand (to inject radioactive dye). Hayley had to have her arm held still, then stuck with a needle and then held tightly while they slowly injected the medicine via IV. Somehow she managed it all with only a few tears. In the heat of it, she looked up at me with big eyes, trying not to whimper, and simply said, "Good girl?" in the sweetest little voice you can imagine. A misty-eyed Mommy told her she was indeed the very bestest little girl in the whole wide world.

Love to you all,
Dayna, Alan & especially Hayley

Tuesday, September 7, 2004

Well, we jump back into the medical world tomorrow with full force. We will be at Egleston from 8 a.m. - 3 p.m. tomorrow for a full day of pre-transplant tests and meetings. Hayley will be having a chest x-ray, echocardiogram and blood work drawn every hour. Fortunately, she is allowed to EAT before all of these tests!! :) In fact, they said that the more she eats and drinks the better. Phew! That will certainly help ease a long and stressful day.

In between Hayley's tests, we'll also be meeting with the child life specialist, finanical counselor, social worker, and of course, we will be going over the dreaded consent forms with Dr. Haight. It's not on our schedule, but I hope they have a reservation for us in the psychiatric unit at the end of the day!

Please keep up those prayers for continued remission and wonderful test results. I'm sure it'll be a long update tomorrow so until then, know we are so very thankful to have all of you on this journey with us!

Dayna, Alan & especially Hayley

Sunday, September 5, 2004

*New photos 9/4

Hope everyone is having a great holiday weekend. In spite of being homebodies, we most definitely are! Hayley is a ball of energy, running from one activity to the next with limitless enthusiasm. She has gotten the occasional red bump just to make us paranoid, but so far they seem to truly just be bug bites. Please keep praying that she STAYS in remission until transplant admission in two weeks.

Our schedule for next week is a bit up in the air. Wednesday will be a big day with EITHER an MRI or the all-day testing at Egleston (we won't know which until Tuesday, and then the other will have to be scheduled later in the week). In the meantime, we hope to have nothing but boring news to report.

Hayley is now saying thank you (Of course, it's more like "tank you"), but I know she'd like to extend a big one to ALL of you, and we want to do the same!! There will never be words to thank you for keeping her as part of your daily talks with God; for all the fun gifts and toys, for yummy dinners, for saving Daddy from yardwork, for contributions to her fund, for encouraging notes and e-mails and much, much more. May God richly bless each of you for your kindness!!

With happy and thankful hearts,
Dayna, Alan & especially Hayley

Friday, September 3, 2004

*New photos 9/4

Well, we got good news and bad news today. (And the bad news isn't so horrible so don't panic!) First, the good news...the preferred cord blood officially came back as a PERFECT match for Hayley. Yea!! And, Hayley's blood counts continue to look good. Her ANC (neutrophils) are up to 510, just barely past the critical threshold, but still past it!

The "bad" news is that we won't be able to head to transplant quite as early as we thought. One of the tests Hayley has to have done next week has a week-long turnaround so the earliest we are looking at being admitted for transplant is September 19/20. So, it's an extra week we have to worry about her relapsing, but it's also an extra week we get to play at home!

The big prayer requests right now are:
1) That Hayley will STAY in remission
2) That she will pass all her vital organ tests with flying colors next week
3) That insurance will have a fast-turnaround on approving the transplant.

These are the only major issues standing between us and the transplant right now.

Hayley continues to be happy and full of energy. She made her grandparents' day today by saying "golf"! (For those of you who know Grammie & Grandpa, this is a BIG DEAL!)

Thank you for your endless support. Your prayers are our very best medicine!!

Dayna, Alan & especially Hayley

Thursday, September 2, 2004

As it turns out, we'll have to wait one more day on the cord blood results. (Do you see a pattern here?!) In the meantime, Hayley has a clinic appointment tomorrow to check out her blood levels. Please pray for great results!!


WEDNESDAY'S UPDATE
Looks like we won't have the cord blood results back until tomorrow. Assuming they come back viable, Egleston has us scheduled for all day meetings/testings next Tuesday - and we should have a final date for admission then.

In our excitement to GET to transplant, we realized we haven't told you ANYTHING about the transplant process and the enormous battle that lies before us. So, for those of you wondering what the heck is involved with a bone marrow transplant, here's the 30,000 foot view. I warn you ahead of time that this entry might get a little long and a little intense, but I hope you'll bear with me 'til the end.

Hayley will be admitted roughly 10 days prior to her transplant for her strongest chemo ever - a "lethal" dose. The idea is to completely destroy her own bone marrow and stem cells so that the donor's cells can replace them. Her immunity will also be destroyed (all the shots she had as a baby will be null and void). After her chemo (and all the possible side effects that come with it), she gets one day of rest, after which the cord blood will be infused into her pretty uneventfully (just like a blood transfusion. No, there's no actual surgery for this transplant!!). The cord cells will begin circulating in Hayley's system, find their way into Hayley's bones and begin building a new blood system for her. (This step is called "engraftment" and ususally happens roughly two weeks post-transplant). She then gradually builds up her new blood and immune system over the next several months/years. Pretty amazing, huh?

Now, many of you know that a transplant is Hayley's only chance of a cure (outside of a non-medical miracle), but you should know it's not a guarantee. The possible complications are many: failure to engraft, veno-occlusive disease (liver failure), life-threatening infections; graft versus host disesase (GVHD, where the new cells recognize Hayley's organs as foreign and attack them), and of course, relapse after transplant. YIKES.

A lot to digest, isn't it?! And the doctors just can't predict who will sail through the process, and who will have complication after complication. We feel very blessed to personally know two AML teens that have gone before us on the transplant journey (Carmel & Merrill), and both are doing very, very well. Of course, the doctors are quick to point out that our situation is different. Why?

1) We aren't in first remission. We have already relapsed once.
2) Even though we have a 6/6 match, it is still not a family donor.

As such, Hayley's risk of every complication is heightened, and the doctors will only give her a 30 percent chance of a successful transplant (alive and cancer-free two years post-transplant). Now, I am not writing this so that you'll be disheartened. But I think it's important for you to know the medical reality - it will make Hayley's successful journey all the more miraculous. And if it encourages you to pray a little harder, that's ok too!! :) And remember, she has already beaten these same odds!

Alan & I remain 100 percent confident that she will get through this in tact. We're not in denial. Rather, we're in "believal" (No, it's not really a word, but Carmel's Mom & I decided it should be!!) The point is, we believe she can get through this, we believe God can use the transplant to heal her IN SPITE of everything that might tell us otherwiwse.

And, so you won't think we're crazy, Hayley does have a few things on her side:

1)She is young (children generally do well with transplant)
2) She is going in healthy without pneumonia, a fungal infection or other things that might crop up during transplant
3)Cord blood tends to have less GVHD

AND, most importantly,
She has the most amazing army of prayer warriors behind her, and a God that loves her so very much. We CAN get through this. We WILL get through it. We just believe it with every bone in our bodies. We hope you'll be in "believal" too.

With love and hope,
Dayna, Alan & especially Hayley

Tuesday, August 31, 2004

We're all still elated by yesterday's news, although beginning to prepare for the next big step...transplant. Alan talked to Egleston yesterday, and while we still don't have a definite date, here's the latest scoop:

Egleston is currently wrapping up detailed testing of the two cord blood matches. They have to make sure that the cords are exactly what they were listed as on paper! They expect to have this testing complete tomorrow (Wednesday). If the cords look good, we can proceed with a final meeting to go over the transplant details and determine a date (my best guess is that we will be admitted around 9/12). Prior to being admitted, Hayley will have tests of all her major organs (another echocardiogram, etc.)And last, but not least, our insurance needs to give final approval to move forward. At the moment, we believe this all can easily be accomplished in the next 10-14 days.

Now, if for some reason, the cords come back unusable, life gets considerably more complicated. They'll have to go back to the donor list and begin the process all over (with a live, non-family donor, this takes months!) So, Hayley would have to have some type of maintenance chemo to try and keep her in remission until we could transplant.

So, please pray that the cord bloods come back PERFECT tomorrow!

In the meantime, we have a clinic appointment on Friday to make sure Hayley's blood counts still look good.

You all are such a huge part of each and every victory we have against this disease. THANK YOU!

Keep on praying!
Dayna, Alan & Hayley

Monday, August 30, 2004

SHOUT IT FROM THE ROOFTOPS - HAYLEY IS BACK IN REMISSION!!! Thank you, thank you, Jesus. We are so thrilled to know our little girl is back on the path to completely restored health. And not only is she in remission, but it's a "good" remission. Remission is technically achieved anytime your blasts (or abnormal cells) are under five percent. Dr. Lew said they saw ZERO blasts under both the microscope and her FLO cytometry test. Praise God!

Now, I have to confess that by the end of all this waiting, I was pretty much expecting her to be in remission since she was doing so well. But the truth is, her remission is nothing short of a mini-miracle. When we started this treatment, the doctors were pretty skeptical that this one treatment would get her to remission (in the 20-30 percent range). After all, they weren't using any of the heavy hitting cardio-toxic drugs (which likely would have necessitated a heart transplant down the road), and she had relapsed SO early during her previous treatment. We only became more and more optimistic as her white count dropped so rapidly and the bumps began to disappear. All of this no doubt, helped greatly by all your prayers.

Please continue to pray that this remission "sticks." The doctors know she will relapse eventually without a transplant - it is a question of WHEN not IF. We hope to proceed on to transplant sometime in the next two weeks, but are waiting on a call back from Egleston to finalize a timeline. We have a huge battle ahead, no doubt, but for today, we're reveling in THIS victory. It is a huge one all on its own.

There really are no words to express our gratitude for each and every prayer you offer for our daughter.

With happy and hopeful hearts,
Dayna, Alan & especially Hayley

Sunday, August 29, 2004

Still having a great time at home. Hayley has so much energy it's almost unthinkable that she's not in remission. She's even managed to catch up with the cats! We have spotted her more than once with a cat tail in hand. We're not sure if she's really all that much faster or if the cats are just so happy to have us home that they'll put up with anything!! Fortunately, she's pretty gentle. No more big adventures or outings, but Hayley's been happy to re-explore her home turf. And Alan and I have managed to get out here and there for dinner, movies, etc, and be blessedly normal.

Of course, we are always mindful of the enormous battle that lies before us as well as all the other children in the midst of their own fights. Just this week, we learned of yet another child sent home under the care of hospice. Please pray for Carter Martin (www.caringbridge.org/ga/cartermartin)and his family. We have never met them personally, but have followed them through others, and cannot imagine the suffering they're currently enduring.

And once again, we find ourselves thankful to still be in the battle - even with all that that entails. Thankful for every happy moment, for each smile and laugh. Thankful for our amazing doctors and the wonders of modern medicine. Thankful for a God that walks beside us in suffering. Thankful for each of you and the many ways you encourage us.

With hope for good news tomorrow,
Dayna, Alan & Hayley

Friday, August 27, 2004

We waited most of the day for a phone call from the AFLAC Center that never came. Well actually, we did get a phone call; just not one with any results. Hayley's pathology reports won't be complete until Monday. We have a knack for dragging things out, don't we?!?

As we wait through another weekend, we are taking the following quote from George Wingram to heart, "We ought to be patient, for He is the doer of everything - and when we are not patient we really are finding fault with Him and His doing. He is a great giver, and if He holds His hand from giving today, tomorrow He often gives two-fold."

Believing for great news on Monday,
Dayna, Alan & especially Hayley

ps - Hayley seems to have full control over her mouth now. Praise God! Still no cheek movement to complete her smile, but we are thankful for this progress!!

Thursday, August 26, 2004

Hayley's procedure went smoothly today. She was a bit cranky not being able to eat until 1:30, but otherwise handled everything like a champ. I know you expect nothing less by now!! She had a clinic appointment at 9:30 a.m. prior to the bone marrow at 12:30, and all her counts continue to look good - no transfusions needed. Everyone was happy to see how her facial palsy is beginning to heal. Yea!

The best news of the day came at 3:00 p.m., when Dr. Lew left a message after running down to the lab to check out the preliminary aspiration. He said "Preliminary looks good. If there were major relapse, I'd expect to see it here." He won't have the biopsy and more detailed tests back until tomorrow (or big groan), possibly Monday. BUT it appears that we are a step closer to remission. The waiting is frustrating, but we remind ourselves that "God's clocks keep perfect time!"

Thank you for your ever faithful prayers.

Dayna, Alan & especially Hayley

Wednesday, August 25, 2004

Crazy enough, but home feels like the most glorious vacation. Alan has the week off, and we are having the best time doing "normal" stuff.

Tomorrow reality sets back in as Hayley undergoes what we hope will be her final bone marrow test. This is the one that will tell us if she's in remission and if we can move on to transplant. We know God will be holding her close during the procedure. Please wrap her in your prayers as well.

TUESDAY'S UDPATE
*New photos

I'm happy to report that Hayley slept in her crib all night (waking up only once) so that was an easier transition than expected. We kicked off our time at home with a field trip to the zoo, which was great fun. No, Hayley couldn't touch the animals, and yes, we probably looked like crazy people following her around with antibacterial wipes, but it was the most normal thing we've done in MONTHS! The pandas and sheep were Hayley's favorites - see new photos in album!

Please keep up those prayers for remission - the big bone marrow aspiration is set for 12:30 on Thursday. The best the doctors will give us is "cautious optimism." We hope to blow them away with the results!!

Barring any fevers and IF Hayley's in remission, our inpatient time at Scottish Rite will officially be over. Believing for the best, I feel I would be remiss if I didn't tell you about the great staff at Scottish Rite hospital. Having spent exactly 130 days with them this year, I feel qualified to tell you!

So, let's start with the housekeepers. An odd place to start, you might think, but we interacted with these women every day, and they were such a blessing to us. There's Phyllis who prays for Hayley every day and sings her "Sugar pie, honey bunch" every time she sees her. When Hayley relapsed, she was one of the first to reassure me Hayley could get through it. There's Elizabeth, who from our first week in the hospital, made it a point to clean Hayley's room first thing every morning so she wouldn't interupt her naps and who visited on her "off shifts". Then, there are the cafeteria workers, who delivered Hayley's food every day, asked about her every time they saw us in the halls, and who also often delivered teddy bears and balloons out of sheer affection for our daughter. Her amazing doctors (Lew, Wasilewski, Bergsagel, George & Rapkin) who would stop to play with her in the halls, and Dr. Lew in particular, who spent countless emotional hours, developing the best possible relapse treatment for Hayley. These doctors truly CARE and it's so evident in all they do.

And, of course, there were her amazing nurses and techs, who we saw nearly every hour of every day for 130 days. We feel privileged to count many of these women among our friends. These are the women who made the hospital FUN for Hayley. The ones who cheered on her every step when learning how to walk. The ones who put a piece of candy in the candy jar every day just for her, who played peek-a-boo with her in the halls. The ones who would pull up horses and puppy dogs on the computer screen for her, who knocked at her from behind the pharmacy glass. The ones who brought blankets and videos from home for Hayley to watch. The ones who taught her new words and the chicken dance! The ones who made having your temperature and blood pressure taken fun. The ones who gave us HUGS and cried when we were having bad days. The ones who made such a fuss over Hayley that you would think she was the ONLY child in the hospital.

And here's the thing...they do this for EVERY child. Now, I'd like to think that Hayley was unique (and yes, some of them DO hold a very special place in their hearts for her), but these nurses make EVERY SINGLE child feel like they're the only one at the hospital. Their hearts are HUGE. They are in the midst of darkness every single day, yet they radiate light and love. They are an amazing blessing to the families who find themselves on the cancer floor. Perhaps the greatest compliment I could pay them is that I could have no higher aspiration for Hayley than to one day become a chemo nurse. Oh sure, she could be a doctor, and there are wonderful things about that too. But I know the size her heart would have to be to be a nurse, and that is a quality beyond compare.

So, all this to say, we sure are glad to be home, but we miss our Scottish Rite friends more than words can say!!

Enjoying every minute at home,
Dayna, Alan & especially Hayley

Monday, August 23, 2004

What a thrill to be home! We arrived a little before 9 p.m., greeted by balloons and a welcome home banner on the garage (thanks neighbors!). Hayley proceeded to wave, blow kisses at, and then chase the cats all through the house. Some things never change! Alan's getting Hayley tucked into her own crib for the first time in ages as I write. We are exhausted, but so very happy to be home - even for a short while. We'll explain more about upcoming steps tomorrow. Right now, the pillows are calling!!
Love to you all,
Dayna, Alan & Hayley

10:00 A.M.
NEWSFLASH: Hayley not only had a white count of .53, but an ANC (absolute neutrophil count) of 280!!!! If that's not enough to make you smile, they just told us that WE CAN GO HOME TODAY!!!

She'll still be highly susceptible to infection and can't be around children, but we'll be home together and that's all that counts. We can hardly believe it!! 44 days in the hospital, but we'll all be home together tonight. Praise God!!

They have moved Hayley's all-important bone marrow aspiration until Thursday so we're still in limbo as to whether or not she's in remission until Friday. But her peripheral blood breakdown looks PERFECT, which is an excellent sign. Please pray that everything continues to recover just as it should with NO cancer.

It will be a long day at the hospital of packing up, good byes, and two transfusions (blood and platelets) before we walk out the door this evening. But we'll be doing it all with big smiles, for sure!! :)

Keep up those prayers for REMISSION!!! Transplant, here we come!!

Love to you all,
Dayna, Alan & especially Hayley

Sunday, August 22, 2004

It was a Sunday full of grins and giggles for Hayley. She walked all over the "playground," played trains and horses, and practiced making elephant noises for most of the day. Mom and Dad had big grins too, but about her white count, which was up to .45. Maybe, just maybe, we'll see some neutrophils tomorrow (they start testing when it's .5 and above). If so, this Tuesday's bone marrow test could be the big one that tells us whether or not she's in remission. We are so ready to hear that news!

For the local among you, try and tune in to WSB 750 sometime on Monday or Tuesday. They are hosting the 4th annual care-a-thon, to benefit the AFLAC Cancer Centers at both Scotish Rite and Egleston. There are sure to be some amazing stories from patients, family and staff. Who knows...perhaps Hayley's own miracle story will be included in next year's event!!

Please keep banging on heaven's door with those prayers for remission!! We are in such a unique position to see prayer at work - and we do, every single day.

Love to all of you,
Dayna, Alan & especially Hayley

Saturday, August 21, 2004

Hayley continues to do well - WBC is up to .35, a slow, but steady rise.

I am so sad to report that Sweet Maddie earned her much-deserved angel wings this morning. I took the following from her Web site...

"After several days of steady decline, Madeline passed away early this morning. We rocked her and sang hymns to her until she took her last breath. At the end she was very peaceful, and we are thankful for that. We plan to have a service here at Smyrna FBC in the next few days and then take her to Louisiana for another service as soon as possible. Thank you for your continued thoughts and prayers."

Please pray that this sweet family would feel God's peace in the difficult days ahead.

FRIDAY UPDATE:
From what I hear, the nurses and doctors let out a big cheer in rounds this morning because Hayley's white count was up to .30! (Not really all that great, but higher than it's been in weeks). We expect it to keep going up, up, up over the weekend, and perhaps deliver some neutrophils along the way.

Otherwise, Hayley is doing well, although definitely a bit bored with her hospital room. Today, we ventured out to the hospital playground (empty at the time) with lots of anti-bacterial wipes in hand. She had a ball walking over the bridges and playing peekabo from behind the walls!

You can just make out the faintest "crease" at the bottom corner of Hayley's left lip, which seems to indicate that her facial nerve IS healing, even if very slowly. With Bells Palsy, it tends to be 50/50 whether you will heal from the forehead down or the mouth up. Wouldn't you know that Hayley's smile will likely be the first thing to heal? Must be our amazing prayer warriors at work!! Keep those prayers coming that the nerve will continue to progress in its healing... a full smile is still a long way off. In the meantime, we feel blessed to be enjoying many lopsided grins.

With love and thanks to all of you,
Dayna, Alan & especially Hayley

Thursday, August 19, 2004

It must be the week for great news! Big Haley's (mentioned in 8/16 update) surgery today was a total success. What was thought to be the quadrupled tumor, turned out to be scar tissue / residue from radiation she had previously. What a happy day for her family!

As for Little Hayley, she continues to be full of energy and looking great. The doctors decided today to go ahead and put her on the white cell hormone. She has had NO immune system for over 4 weeks now, and the doctors just feel we are "pushing our luck" on her not getting a bad fungal infection (which would equal NO transplant). As they like to say, the GCSF, will "give her bone marrow a swift kick in the rear." So, hopefully we should see some rising counts in the next few days. Wouldn't that be nice for a change?!?

Keep those prayers coming! We truly believe they're working!!
Dayna, Alan & Hayley

Wednesday, August 18, 2004

A great day all the way around. The official reports are in, and everything (biopsy, bone marrow) is NEGATIVE for cancer. The doctors had big smiles on their faces over that one and so do we!! They really were worried - more than we even knew. Praise God - we feel very blessed.

As for the marrow, it is still basically empty (big groan) so no going home for us anytime soon. They said there were a few (literally 3 or 4) neutrophils in her marrow - but that is better than none at all. Our new goal is to get home by Day 50 (tomorrow will be 40, and there's no way we're going to make that one!). At least, we have a new target to shoot for.

There is some question right now as to whether we really want to use cord blood (best for speed; less graft versus host) or donor marrow (best if she relapses post-transplant) for Hayley's bmt. Without getting into all the details, please pray for wisdom for her doctors and our family.

Our other primary prayer requests continue to be RECOVERY, REMISSION & RESTORATION of Hayley's facial nerve.

God bless you all for your amazing support!!
Dayna, Alan & Hayley

ps - Thanks to the anonymous person who dropped off all the cute balloons for Hayley. She loves them!

pps - Did I mention that the surgeon cut Hayley's biopsy dressing into the shape of a heart? It is quite a sight! These pediatric doctors surprise us every day with their own, unbelievably big and caring hearts.

Tuesday, August 17, 2004

8:00 p.m.
INITIAL SKIN BIOPSY TEST IS NEGATIVE FOR CANCER!!! One more detailed test to go, but the doctors are very optimistic that it will yield similar results. WOO HOO!!!

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13


4:00 p.m.
Hayley made it through surgery just fine today - and was back in the room around 1:30 p.m. with a new battle wound from the biopsy! Instead of using the usual "gas mask," they put her under full general anesthesia (breathing tube and all) so she was a bit groggy and raspy upon her return, but is feeling great this afternoon. We won't have any official results until late Wednesday/early Thursday, however, we did get one positive comment from the surgeon. He said the mass did NOT look like cancer to him. But, as he reminded us, he's no pathologist so we'll have to wait and see. But nice to hear, nonetheless.

Our meeting with Dr. Haight was very positive. We basically went over the basics of transplant along with different scenerios for remission/non-remission. We had quite a laundry list of questions for her, and she handled each one like a pro. I wanted to give her a big hug by the end of the meeting, and I'd only known her for two hours! We've mentioned before, the statistics aren't pretty, but we were prepared for that. One positive out of the meeting is that they do NOT anticipate using radiation as part of Hayley's pre-transplant regimen (If she were over 5 they probably would, but don't want to risk it with her age). That is something I was particularly troubled about so it was nice to hear it won't be an issue! Also, if Hayley is NOT in remission, we confirmed that we will try other chemo treatments before heading to transplant versus just "going for it", which has a lower success rate. The doctors are working on exactly what this chemo treatment might look like. Please pray that it won't even be necessary!!

As soon as we know something, you'll know something! We couldn't do this without all of you and a big, awesome God behind us.

Keep on praying!!
Dayna, Alan & Hayley

Monday, August 16, 2004

5 p.m.
I guess once you've been here long enough, Egleston will come to you. We have a meeting scheduled tomorrow at 10 a.m. with Dr. Haight, one of Hayley's two transplant doctors. We will go over various treatment scenerios and of course, everything that could go wrong along the way. It will be a stressful meeting, but should start to answer some of our many, many questions. No time set for Hayley's surgery yet, but tomorrow will obviously be a big day on many fronts. Thanks for all your prayers and words of encouragement.


11:00 a.m.
Unfortunately, the bruise/bump has become more distinct. Yesterday, you could only feel the bump beneath the skin; today you can actually see it. They will be doing a skin biopsy during tomorrow's bone marrow test to determine for sure what it is. The main possibility (besides cancer) is that Hayley could have had some sub-skin bleeding that calcified, forming the bump. Given the location near her tube clamps and the low platelets she had when the bump appeared, this is very plausible. Tomorrow's test will provide answers; her procedures will be scheduled sometime between noon and 2 p.m. Meanwhile, Hayley has been in a great mood the past few days. The idea that the cancer is back is almost beyond comprehension. BUT...

I would be lying if I said we weren't scared. We are. I would be lying if I said the doctors weren't worried. They are. Please pray harder than ever.


SUNDAY'S UPDATE
Hayley has been all smiles today. And she had a white count of .23, up from .20 yesterday. Not too significant, but we'll take any upward trend we can get! We do have one specific prayer request. Hayley has developed a raised bruise to the right of her stomach - it's a pretty large one and appeared seemingly out of nowhere. Now, her platelets are really low so bruising is common, and she will receive a transfusion tonight. The bruise happens to fall right where her tube clamps are so the most likely explanation is simply that she rolled over on one of the clamps, and with low platelets, a bruise would result. But of course, I made the mistake of asking the doctor what the worst case scenerio with the bruise is. His answer - It could be a chloroma (a.k.a. a bump, a nodule, CANCER). So, we ask your prayers that a bruise is really just a bruise. (The doctors are confident that it is, but in his words, they will always worry about "skin things" now with Hayley).

Just last night, we learned of another family who has been told that their daughter, this time a teen, only has 2-3 months to live. Ironically, her name is Haley. When she and our Hayley were on the hall together, we always referred to them as Big Haley and Little Hayley. Well, Big Haley has a tumor near her brain, which has quadrupled in size since her relapse in June. There is some hope for surgical removal - they meet with the surgeon tomorrow. Please be praying for this meeting.

At times we feel we are living in a war zone. And many who have been through the experience before us have described life on the cancer hall as a battlefield, where the casualties are children. It would be easy to drown in the sorrow, to resign ourselves to a similar fate. But instead we are trusting in God's plan so much greater than our own; trusting that our Hayley's story will be one of the sweet victories, trusting that God is still a healer. I heard someone say recently, "If you can't trust the one who died to save you, who can you trust??" Well put, I think.

Thanks, as always, for your wonderful prayers.

Saturday, August 14, 2004

Well, we've officially made this our longest hospital stay ever at 35 days and counting. Fortunately, day 35 was as uneventful as days 34, 33, 32... :) Hayley's white count is at .20 today; we'll see if we can get a two-day trend tomorrow. Some of you may be wondering why her recovery is taking so much longer this time, and there are several potential reasons...

Hayley has had multiple rounds of chemo now. As the doctors say, "we've trashed her marrow" so many times that each time may take longer to recover.

The other significant factor is that Hayley is not being given GCSF, the hormone that helps white cells grow. (She has always received this in the past). The logic for not giving the hormone is simply that it makes ALL cells grow (cancerous or healthy). Since there's a chance that she's not in remission, they don't want to give any cancer added breeding ground.

So, the waiting goes on. Please keep on praying for those neutrophils and giving praise for every day that she's cancer free!

Friday, August 13, 2004

*New photos

In spite of counts that are going nowhere fast (.15 today), Hayley continues to do well. We've decided that the "terrible twos" have come early at 18 months, as at times she's quite a challenge to keep happy. She has a mind all her own, but what 18-month-old doesn't, right?! Please keep up those prayers for healthy cells and next Tuesday's bone marrow aspiration/biopsy.

Alan and I got an interesting letter in the mail yesterday, which broke down participants in the bone marrow registry by country. Of the 5.6 million people on the registry as potential donors, can you guess how many are from the United States?!?

Did you guess?

The answer may surprise you.

A measly 180,000.

I have to tell you, we were pretty disappointed. England, France & Germany, in comparison, average close to one million participants each. I'm not sure what the reason for the discrepancy is, but we want to encourage all of you to consider joining the national bone marrow registry. There are thousands of other "Hayleys" out there who might one day need your marrow to survive. You can find more information on becoming a donor as well as cord blood donation at www.marrow.org. What better gift could you give yourself and someone else than to save a life!?!

With love, faith and gratitude for our 80 matches,
Dayna, Alan & Hayley



THURSDAY'S UPDATE

The good news is that Hayley continues to make interesting updates a challenge. The bone marrow biopsy results did come back today, but as expected, the bone wall was every bit as empty as the bone marrow fluid. Still a positive that there was no sign of cancer cells! The doctors won't make a prediction as to whether or not she's in remission - we believe the statistical odds are probably about 50/50. Please keep praying that ONLY healthy cells recover - whenever that happens. The doctors expect next week's bone marrow (Tuesday) to hold more answers.

In the meantime, Hayley continues to be healthy and happy. Her new favorite activities are doing the chicken dance and the hula, of all things! Her facial palsy is about the same, but not having full function isn't slowing her down from picking up new words every day. The lastest is "roll, roll, roll" when rolling a ball of playdoh, of course! (Please keep praying for nerve healing!)

I've finally managed to add Maddie's Web link above for those of you who might want to see pictures of this sweet little girl. Maddie's "maintenance chemo" ended yesterday and her family will be taking her home tomorrow. The doctors have said with absolute certainty that the chemo will NOT cure the tumors. Without discounting a complete miracle, please pray that this sweet family will enjoy their time at home with Maddie, and that God will comfort them in ways that those of us here cannot.

You are all such an amazing blessing to us.

Wednesday, August 11, 2004

Not much to report today...the waiting continues. Dr. Woods said he'd much rather have empty marrow with no cancer than recovery with cancer! He also commented that they are all pleasantly surprised by how healthy (no big infections) Hayley is considering she's had NO immune system for over 3 weeks now. So all good news today. White count was .25 - we'll wait and see what it does tomorrow before getting too excited. Once again, we are working on patience, patience, patience. Alan's Mom (Nana) sent me a blurb on the subject that I thought was pretty appropriate...

"Patience is a quality that is often undervalued. We associate it with sitting in the back seat of our parents' car on a long road trip and being told, "Be patient! We'll get there when we get there." But all we were cultivating then was endurance. True patience is not just tolerance, the willingness to put up with things. Patience allows us to be fully present for our experience, in all its difficulties and challenges. When we are patient, we can open fully to the mystery and the opportunities that fill our lives, seeing things as they truly are, not as we would wish them to be."

So we wait as patiently as we can, embracing the experience and all the wonderful people we meet along the way.

Speaking of wonderful people, Hayley's friend, Elise, who has AML and Down's Syndrome, completed her inpatient chemo today. Hopefully, she will never be back at the cancer center again. Oddly enough, there is an excellent prognosis for AML if you also have Down's so I fully expect that Elise is CURED. A big congratulations to Elise, Tiffany, Ethan & Gabriel on being home for good! We will miss their smiling faces. It is strange - you become so attached to all these children. And the defeats are so hard, but the victories are SWEET.

Keep on praying!

Dayna, Alan & Hayley

Tuesday, August 10, 2004 4:34 PM CDT

Hayley's counts dipped back down today to .19 so I think we officially give up on predicting when she will recover!! But Dr. Woods assures us she WILL recover and that they haven't completely wiped out her stem cells.

The bone marrow aspiration/biopsy went off without a hitch. The nurses were cracking up as they wheeled Hayley back from recovery - she was lounging on the stretcher like she was queen of the hospital. And, she pretty well is. I'm not sure there's a hospital staff member that doesn't know her now.

We won't have the final results on the biopsy until Thursday a.m.; however, we do have a preliminary report on the bone marrow aspiration. It is still clean (NO CANCER) -Praise God!! Unfortunately, it is also still nearly empty. They did see some signs of red cell growth, which suggests white cell growth might be on the way too. They will be repeating a bone marrow every week until she fully recovers, but we hope to see healthy white cells building in her bloodstream by week's end. We are on Day 31 today; our revised goal is to get home by Day 40!

Other good news is that we are now down to one antibiotic since the fever has been at bay for a while, and Hayley is poleless most of the day.

Keep on praying for remission! We believe it's just around the corner.

"Humble yourself under God's mighty hand that he may lift you up in due time. Cast all your anxiety on Him because He cares for you." 1 Peter 5:6-7

Monday, August 9, 2004 1:50 PM CDT

Hayley's white count was up to .26 today, the highest it's been in three weeks (still no neutrophils, of course). Perhaps the start of a real recovery?!? Tomorrow's bone marrow aspiration and biopsy should provide some answers. Please be praying for great results. Hayley's surgery is scheduled for 12:50 p.m., so it will be another long morning without food.

We had the opportunity today to meet Dr. Woods, a key player on the national board for AML, and head of the AFLAC Cancer centers at Scotish Rite and Egleston. He was excited to finally put a face with Hayley's name, and said she looks amazing considering all she's been through recently. He couldn't find anything wrong with her as hard as he looked (other than the obvious, of course!)

Hayley's spirits are good, and believe it or not, she actually put up with having her ears checked today. I guess our "doctor play" has done some good!

Finally, Little Jack W. will be "rescued" with his own pre-harvested bone marrow TODAY! We are sending lots of love his way and wishes for quick rising counts. We are also waiting to hear word that sweet Merrill's donated marrow has engrafted! We appreciate you keeping all these other fighters in your prayers. None of them deserve to be in the midst of these battles for life. But we have faith that they CAN and WILL CONQUER!!!

Love to you all,
Dayna, Alan & Hayley

Sunday, August 8, 2004 1:21 PM CDT

Hayley is definitely on the rebound. She uses her new favorite word ("NO") at every chance she gets. Unfortunately, her white count dipped back down today, but I think we almost expected that. Hopefully, her next bone marrow on Tuesday will show some cell recovery.

Today, I want to take some time to tell you about Madeline Grace. As you know, we meet a lot of people on the hall - particularly the babies - they always want out of their rooms! Maddie was diagnosed with two tumors - on her spine and bladder- when she was just four months old. She comes in for chemo several days each month, and with our extended stays, we've seen them on most of our admissions. Maddie just turned one a few weeks ago, and despite having no hair, she is one of the prettiest little girls I have ever laid eyes on. Her family has been excited because her spinal tumor disappeared several months ago and the tumor on her bladder was about to be removed. They were almost at the end of their difficult journey.

And then yesterday, Maddie woke up unable to open her eye. They ordered an MRI knowing it could possibly be a tumor, but believing for the best. The results have been devastating.

Sweet little Maddie has numerous tumors surrounding her brain. They grew over the other chemo she was given, and are infiltrating her brain. The doctors have given her TWO weeks to live, and that's with additional chemo to slow things down. Their whole family is surrounding them today, all of them shocked and heartbroken. And, we know that we could so very easily be standing in their shoes.

It is funny how a day can change your perspective. Today, we are dropping to our knees, thankful to have a 20 percent prognosis (as crazy as that sounds!), and that God has only given us this to handle. Today, our situation seems like a gift - and it is. Each and every single day is a gift. Today, we are taking nothing for granted. We hope you won't either.

Your prayers tonight for Maddie's family are so very appreciated.

Saturday, August 7, 2004 5:17 PM CDT

Hi everyone -
It's been a pretty routine Saturday. Hayley is still not 100 percent, but well enough to play most of the day, and definitely seems to be on the mend from the infection. Her white count is SLOWLY climbing, .13, .14, .18. Still no neutrophils (they don't even look for them until you're at .50), but we have decided to TRY and look at this slow recovery as a positive. After all, the longer it takes, the closer we'll be to her transplant date (and the less time there will be for her to relapse in between). God's timing is always perfect, right?! One of the doctors on call this weekend happens to do most of her work at Egleston. While she is not a transplant specialist per se, we peppered her with the questions we haven't been able to ask due to our postponed meeting. We trapped her in the room for about an hour, but she was kind enough to answer our questions as best she could.

Highlights of the day have been playing with Hayley's very realistic doctor's kit (a gift from the child life specialist), which includes an otoscope. (Hayley does great on most 'exams', but the ears remain an issue). She now thinks it's great fun to look in Mommy's, Daddy's and her puppy dogs' ears so maybe that will help.

For now, we ask that you keep focusing your powerful prayers on REMISSION and facial nerve healing. We'd so like to see her nerve heal before transplant as additional chemo will just slow the process down. We appreciate you taking the time to check in on us - we are blessed to have such amazing people in our lives during this journey.

With love,
Dayna, Alan & Hayley

Friday, August 6, 2004

As I was pulling into the hospital early this morning, I noticed the sky had the most beautiful glow. The sun was shining so brightly behind the clouds, it was almost like you could see just the tiniest slice of heaven shining down. It was truly beautiful, and I just knew it was going to be a better day.

And, so far, it most definitely has been. Hayley is by no means feeling 100 pecent, but she is up and playing, and generally in much better spirits than yesterday. What a blessing!! Grammie couldn't resist getting her some Play Doh accessories (spaghetti machine and all) so she is thoroughly enjoying that! Her hemoglobin (red cells) is finally up to healthy levels, which I'm sure is helping her energy level. It must be the week for transfusions, though -today she is getting platelets.

She has developed a bit of a rash, which seems to support the viral infection theory - although still no ideas what it might be. They are continuing antibiotics as a precaution, but she hasn't run a fever since last night. Another thing we are thankful for! They drew blood for a special test to tell how her immune system is functioning. If it comes back low, she may get a transfusion of antibodies (can't remember what this is called!) tomorrow. This would also help fight any virus she might have.

A special congratulations to Dr. Lew, who welcomed his second baby boy to the world this morning. We know that seeing what he sees each and every day, he must truly appreciate what a gift a healthy baby is. Unfortunately for us, Dr. Lew will be out for the next two weeks, but we have the rest of the great oncology team to fill the gap.

As always, we so appreciate your wonderful postings. On days like yesterday, they really keep us going!
Love,
Dayna, Alan & Hayley

Thursday, August 5, 2004 4:37 PM CDT

Hayley fought her fever on and off all day long, and has again, been feeling pretty lousy. We were surprised to see her blood counts plummet down even further this morning(could be the infection is using up the few cells she had). Although she had a blood transfusion yesterday, she was still critically low, and had to have another blood transfusion today. Hopefully, this one will do the trick!

Dr. Lew thinks she may be fighting a viral infection; thus far, no bacteria cells have grown in her cultures. They drew additional blood for viral testing, but it may take up to a week to get the results.

Please diligently pray for healthy white cells over the next few days and relief from Hayley's discomfort - whatever the source. Also, please continue to focus your prayers on remission. Although they haven't said it outright, I can tell the doctors grow a bit more concerned with each passing day that she hasn't recovered yet. So, with all of this, we're emotionally feeling a bit down today, but we are holding to God's promises and finding comfort there.

With love,
Dayna, Alan & Hayley

Wednesday, August 4, 2004 5:37 PM CDT

Hayley spent most of the day trying to spike a fever, and generally just being cranky. Makes for a long day with all of us in a 10 x 15 room! She finally mangaged to break through the 101 fever threshold around 4 p.m. so she will be on heavy duty antibiotics for at least the next 48 hours. Although it's more difficult for us to have her "hooked up" to the pole, we are thrilled she can finally have some relief after 48 hours of general misery. By 6:30, she was already starting to return to her normal self, fever was coming down, and she had even ventured out to look at horses on the computer. As always happens when she spikes a fever, the nurses had to draw blood for cultures. Please pray that the antibiotics will take care of whatever infection may be causing the fevers, and also for neutrophils to help out!

Dr. B is convinced she's making white cells in her marrow -we hope he's right and that we see them SOON!!

"In my opinion, whatever we may have to go through now is less than nothing compared with the magnificent future God has planned for us." Romans 8:18

Tuesday, August 3, 2004 4:59 PM CDT

Hi everyone,
Hayley tried to spike a fever last night, but managed to keep it capped at 100.4, so we remain free of poles, fluids and antibiotics, which is good (101 starts all of that fun!). She was fever free all day today, but very cranky. We hope this is indicative of white cell growth in her bone marrow (which causes achiness) and not a pending infection. We'll see...

We received word today that the "tentative" date for a bone marrow transplant will be sometime between Labor Day and September 15th. This is, of course, assuming Hayley is in remission. If not, the transplant could be postponed indefinitely. The reason for waiting until September has to do with risk of veno-occlusive disease (liver failure, for which there is no cure), an uncommon side effect of bone marrow transplants in general. Apparently, there is an increased chance of VOD if you head to transplant with less than a 4-5 week gap between the transplant and Mylotarg. All pretty technical, but we trust the doctors know what they're talking about. Since the transplant date is still 4-5 weeks out, we won't meet with Egleston until we are released, probably next week sometime. This is a little disappointing, but we are getting used to waiting!

Tomorrow will most likely bring a blood transfusion, as Hayley's hemoglobin is getting critically low. This is pretty standard fare post-chemo, and should go smoothly.

Your continued prayers for cell recovery, remission and facial nerve healing are so very appreciated.

Keeping the faith,
Dayna, Alan & Hayley

Monday, August 2, 2004

Hi everyone,
Sorry to keep you waiting, but we just now got the results of Hayley's marrow test. It was completely CLEAN!! No cancer cells at all. Praise God!! We are so happy. The only thing tempering our excitement is that the doctors still won't declare Hayley in remission. The reason? Her marrow was basically empty of almost ALL cells; in other words, her body has not started recovering yet. So, we ask your prayers for healthy white cell recovery asap, which will also be the determinant for us going home. There is definitely a strong possibility that she's in remission, and we are so very thankful, but we won't rest easy until we know for sure. The doctors plan to repeat a bone marrow in roughly one week to see where we're at.

In the meantime, Alan and I are hoping to schedule a meeting with Egleston this week. We'll keep you posted.

As always, thank you for your prayers, for believing, for riding this rollercoaster with us. We firmly believe we're only days away from more great news! God is good, indeed.
Love,
Dayna, Alan & Hayley

ps - Right after adding this entry, I was so saddened to learn that Alex of Alex's lemonade stand fame, lost her battle with cancer yesterday and earned her much deserved wings. You may remember a posting about this brave young girl on Hayley's old Web site. Please remember Alex's family in your prayers as they deal with this heartbreaking loss. Alex just recently passed the $700,000 mark in her fundraising effort and will no doubt reach her $1 million dollar goal by the end of the year. We are so sad that she won't see her dream realized on earth, but I know she will be smiling down from heaven. What a wonderful angel she will be...

Sunday, August 1, 2004 3:56 PM CDT

It's been a lazy Sunday here at Scottish Rite. Hayley has somehow conned the nurses into pulling up pictures of horses and puppy dogs on the computer everytime she wanders into the nurses station. (Thanks, Joy...we'll be getting an English Bulldog soon, I'm sure). She continues to be healthy and happy, despite still having NO neutrophils (infection-fighting white cells). Please continue praying for her counts to rise. The determinant of remission will be not only that she has clear marrow, but also that her body is recovering with healthy cells. We anxiously await the results of her bone marrow biopsy tomorrow, and will let you know as soon as we hear something. We hope for a busy week, filled with TRANSPLANT preparation!! :)
Thanks for taking this journey with us!

Love,

Dayna, Alan & Hayley

ps - Please say some extra prayers for Jack W., who will be starting his intense, pre-transplant chemotherapy tomorrow. He is having a different type of transplant than Hayley, where his own pre-harvested marrow will "rescue" him after receiving the chemo. I know any extra prayers would be welcomed.

Saturday, July 31, 2004

Hi everyone,
A quiet Saturday here so far. It has been three weeks now since we were admitted after relapse, and we are happy to keep reporting progress. As I mentioned, we won't have a final pathology report on the bone marrow until Monday. However, the tech did send up a preliminary report that nothing stands out as "bad." In other words, at the very least, Hayley is considered a "partial response" to this chemo treatment. The disease is not steady or progressing. This is good news! Monday will bring all the details - we are hopeful for the very best - remission!

Hayley is in no apparent pain from the tubes or the bone marrow, and in fact, appears to be ready to ditch her morning nap for good. Mom & Dad aren't too excited about that, but are thankful she has so much energy to burn.

One big puzzle piece (the matches) has fallen into place; we hope to have another piece to add soon. We are so very blessed by your prayers. Hope you're all having a great Saturday.

Love,

Dayna, Alan & especially Hayley

Thursday, July 29, 2004

Friday, July 30, 2004

Hi everyone,
Hayley's surgery went smoothly this morning - she was back from the OR in less than 45 minutes. She's a bit groggy from the anestheisa, but otherwise is feeling just fine. Unfortunately, we won't have the results from the bone marrow aspiration/biopsy until Monday, so please keep that in your prayers over the weekend. Also, healing for her facial nerve, and wisdom for the Egleston doctors as they further research the bone marrow matches. If you missed yesterday's big news, be sure and keep reading below. Yea God!! A big congratulations goes out to Carmel, who yesterday reached 100 days post-transplant. Most complications from bone marrow transplants arise within the first 100 days, so we celebrate with the Ast family that they are past this major milestone. Praise God!

Your prayers and warm wishes continue to sustain us on this journey. Thank you!!
Dayna, Alan & Hayley


______________________________

Thursday's Update:

I apologize in advance for what promises to be a lengthy journal entry, but I have the most wonderful, amazing news to share. We got the results of Hayley's HLA typing / bone marrow match search today. For those of you not familiar with the "rating" of matches, there are 6 primary marrow properties the transplant team looks for, and matches are scored as to whether they are a 4/6, 5/6, etc. For non-family matches, they like to have a 5/6 or better for transplant. Now, hold on to your hats.

Hayley has more than EIGHTY 6/6 matches out there, 2 of which are cord bloods. Did you read that? MORE THAN 80!!!!!!!!! Wow, wow, wow, wow. We can't even comprehend how huge that is. I cried and cried when I got the news -tears of joy and gratitude. This is a God thing, plain and simple. A clear and grand reminder of who's in control here - the Master artist who is painting a picture so much grander than that which we can see. I still get chill bumps writing about it now.

Now, with more than 80 matches, the transplant team gets to be "picky" and look at other marrow properties beyond the usual six. At the moment, they are leaning towards using one of the cord blood matches. The significance of the cord blood is that it's a FASTER process, and fast will be key for Hayley, since she has already relapsed. They will likely spend the next two weeks, further researching the matches and making a final determination. But, the bottom line is, if somehow, Hayley were in remission after this first round of chemo, they could probably go ahead and take us to transplant. That is such wonderful news.

So, with that said, the key issue remains getting her back to remission. We can't transplant without that (or at least not with any likelihood of success). So, tomorrow's bone marrow aspiration will be pretty important. We know that statistically speaking, she probably won't be in remission (yet), but we'd at least like to see a much smaller cancer population in her marrow. Well, actually, we'd like two miracles in a row with a full remission, but we're setting our expectations where they need to be. Because her counts are still virtually non-existant, they will also be doing an actual bone marrow biopsy (removing a piece of the bone) to make sure the leukemia cells aren't in there and just "sticking to the bone." All of this will be happening around noon tomorrow so please keep Hayley in your prayers as she heads into the surgery (tubes too!).

To prep for the surgery, Hayley will be getting a platelet transfusion today. She isn't critically low, but for surgery, they like your counts closer to normal levels. This will be her 17th transfusion this year, but fortunately, she continues to handle them well.

In the meantime, we await tomorrow with big grins on our faces. God is awesome, isn't He?!? And thanks to all of you, our most amazing army of prayer warriors. And to the anonymous woman out there, who with great forethought and selflessness, donated her baby's cord blood, there are simply no words. Your simple act may well save our baby's life. Tonight, we pray for you and your family, that you would somehow know the great joy you have given someone else.

With ear-to-ear smiles (and a few happy tears),
Dayna, Alan & Hayley

Wednesday, July 28, 2004 6:53 PM CDT

Not much news today...we are pretty much in "wait" mode now. Alan and I decided that God must be testing our patience as everything keeps getting postponed (e.g., our visit with Eggleston; the HLA typing results; Hayley's SLOW white cell recovery). Strangely enough, I just finished reading "The Time Traveler's Wife," a book about a man who time travels, and his wife, who cannot. Throughout the book, the man travels both backwards and forward in time. He meets with himelf at younger and older ages; he meets with his wife as a child; he meets with his future daughter. He is powerless to change events that have happened, but he can provide "glimpses of the future" to himself and to his family if he chooses. After reading the book, I can't help but wish that my "2005 self" could provide that glimpse of the future, could reassure me to persevere. Somehow I think it would ease the waiting and ease the low points, but then I remember that knowing would also take away from the joys.

So, we are trying to ENJOY the waiting, treasuring every laugh, capturing every crooked smile in our memories. We know that God's timing is perfect in ALL THINGS, and everything will fall into place when it should. We hope, hope, hope to have the HLA typing information by the end of the week. Friday will be a big day, with both the bone marrow aspiration and tube insertion. We so appreciate you keeping that in your prayers.

A special thank you to Kim for letting me have a meltdown over the bump Monday and reminding me that she will be dancing at Hayley's wedding!! I recently read that "friends are the quiet angels who lift us to our feet when our wings have trouble remembering how to fly." So very true.

We are blessed by each of you, your prayers, and loving thoughts more than you know.

Dayna, Alan & Hayley

ps - Everything went smoothly with Merrill's transplant today. Thank you all for the prayers. They've got a long road ahead, but we're happy to report that today was a great day for the King family!!

Tuesday, July 27, 2004 7:59 PM CDT

Hey everyone,
So sorry for the late update today. We spent most of the late afternoon and early evening moving into the penthouse of the Aflac Cancer Center, #314. So we've got a little bit more room now, which will be great! The downside of being offered the room is that they think we may still be there awhile - probably another week. Hayley continues to be happy as a clam at her home away from home. Highlights of the day were practicing marching and coloring some of her first pictures.

On the medical front...we did meet with an ENT yesterday, who asked an audiologist to perform a special test on Hayley's ears. The test is designed to check for movement of the eardrum and tell whether or not fluid is trapped. The audiologist performed the test today, and there was definitely fluid trapped in her ears. So, we will almost certainly have ear tubes put in during her bone marrow aspiration on Friday. We're actually excited to have this done as it should make things easier down the road.

On to the most exciting news...

Now that I've got all of you worried about the "bump," I'm happy to report that it shrank before my eyes today and was on the verge of invisibility by the time we put Hayley to bed. Thank you, Lord!! Perhaps we can chalk that one up to cancer mom paranoia!

As always, we can't thank you enough for your sweet e-mails and guestbook postings. They really keep us encouraged and are such a joy to read.

Along with your prayers for Hayley, please especially remember Merrill and her family in your prayers tonight. Merrill is one of Hayley's favorite people in the whole world, and she is scheduled to have her bone marrow transplant tomorrow!! The link to her Web site is above.

Blessings to all of you,
Dayna, Alan & Hayley

Monday, July 26, 2004 1:02 PM CDT

Well, I have to confess...I worried about that silly bump all last night and most of the morning. Not without cause -the diaper rash has improved, and the bump remains. Today, two doctors have looked at it, and both do NOT think it's the same as her other skin leukemia bumps - mainly based on its color. I'm having a hard time sharing their optimism, especially when I've had previous bumps initially "chalked up to nothing." I'm ready to biopsy it today, hating the unknown more than having facts in hand, but of course, that would be painful for Hayley and a bit premature. The doctors HAVE decided to go ahead and schedule a bone marrow aspiration for Friday, though, to see what's happening. At that point, if we need to adjust the chemo treatment, we will. OR, if the marrow is clean, but the bump remains, we'll do a biopsy. So, we wait til Friday. In the midst of all of this, we learned that Egleston does NOT want us to get a pass to bring Hayley over for the meeting tomorrow (they wanted to meet her as well). So, we now have to reschedule that meeting for a time when we're all home. It was not critical to have the meeting tomorrow, but we were looking forward to "getting it over with." Bottom line...more waiting.

So, it's been a bit of a down day on the emotional roller coaster. But you would never know it to look at Hayley. In every way, she seems completely cancer free. She has more energy than you can imagine, returning color, and has been trying to con every nurse that she lays eyes on into playing Play Doh with her! So, after a rough morning, Alan & I are rebounding, gathering up our fighting energy, and believing an upturn on the roller coaster is around the corner...perhaps as soon as Friday?!?

Please keep lifting our sweet baby up in your prayers...prayers that the bump is truly "nothing," and that Friday will bring good news!!

With love and faith,

Dayna, Alan & Hayley

Sunday, July 25, 2004 12:06 AM CDT

Happy Sunday everyone!

We had a bit of a scare this morning. Everytime Hayley's white counts are low, she tends to suffer from diaper rash. This time, it has actually been pretty mild since she hasn't been on antibiotics for a prolonged amount of time. Anyway, this morning, we were changing her diaper, and noticed a very distinct red, round spot, seemingly separated from the rest of the diaper rash. Needless to say, our hearts skipped a few beats. But we didn't stop to investigate - Hayley pretty much hates having her diaper changed more than anything in the world, so we were anxious to wrap it up quickly. But we alerted her doctor, who promptly came to check it out a while later. Anyway, turns out (big sigh of relief), that it is purely superficial, not raised (like her other cancerous bumps), and has some other differing qualities. Thank God!! The whole incident made me wonder if I will ever be able to regard a mosquito bite as just a mosquito bite ever again in my life!

Everything else has been smooth sailing. Her white counts are on the rise, at last. Still no ANC (neutrophils), but they should arrive on the scene any day now. There also seems to be a general consensus that there is SLIGHT improvement in her left-side facial paralysis. When she cries, she can now partially close her left eye (Before, it would remain wide open). It is only a slight improvement, and she still can't move the left side of her mouth, but it at least indicates that the nerve has begun the process of healing. YEA!!

Tomorrow we will be meeting with an ENT to discuss whether or not it makes sense to put in ear tubes while she's under sedation for her next bone marrow aspiration. Given her history with ear infections and the low counts she will have over the coming months, it seems a wise thing to do. But we'll see what the ENT has to say tomorrow.

Please continue sending those powerful prayers heavenward. We truly feel them working.
Love,
Dayna, Alan & especially Hayley!!

Friday, July 23, 2004 4:37 PM CDT

Saturday Update:

Another "boring" day at Scottish Rite. Hayley was all smiles, pushing her shopping cart through the halls and nurses station. Alan & I actually got out to a movie for the first time in ages so that was a nice change of pace. Still no neutrophils (ANC), otherwise known as infection-fighting white cells, but no fevers either. Her platelets were on the rise today so perhaps an upswing in all her counts is around the corner. We'll see...

I realized that you may be wondering why in the world we would be switching hospitals (to Egleston) for the bone marrow transplant. As some of you know, Scotish Rite and Egleston are both operated under the umbrella of Children's Healthcare of Atlanta so they are really "one" hospital. As such, each hospital has some areas of speciality. Although each hospital has a cancer center, tranpslants are ONLY performed at Egleston. So, to Egleston we must go! We are eagerly and anxiously awaiting our meeting on Tuesday. As you might imagine, we have a pretty LONG list of questions!

Hope you're all having a great weekend. Thanks, as always, for your prayers.

Love,
Dayna, Alan & Hayley

"My grace is sufficient for you, for my strength is made perfect in weakness." 2 Corinthians 12:9

______________________________

Friday Update:

Not much news today. Hayley is still in a good mood, and no tests or surprises today. She continues to be completely obsessed with playdough and her new larger-than-life puppy dog. Fun today included playing with crazy Nurse Joy :) and a lunch visit from McKinley, one of our old AFLAC buddies. We anticipate a fairly boring weekend of waiting - waiting on her counts to recover so we can get a break at home; waiting on the HLA typing, which we should hear about Tuesday; and waiting to talk to the docs at Egleston about the bone marrow transplant procedure. So, we are trying our very best to be patient!! Fever and infection are always a risk with her low counts, but hopefully we can keep them at bay this time. Please continue your prayers that Hayley is on her way back to remission (if not there already!)

For those of you needing a reminder that God IS still in the miracle business, I want to briefly tell you about Jonathan. Jonathan has stage IV hepatoblastoma (liver cancer). At diagnosis, he was given a TWO percent chance of survival. This young man has endured more than 10 surgeries over the past few months to remove the tumors that have infiltrated his body. To make a long story short, his family was told yesterday, that there is NO TRACE of cancer left in his body, and today he was able to go home! Another great reminder that anything is possible with God!

We know that each of you have extremely busy lives, and we so appreciate you checking in on us and keeping Hayley on your hearts and in your prayers. You all continue to amaze us.

Love,
Dayna, Alan & Hayley

Thursday, July 22, 2004 2:08 PM CDT

Hey everybody -
Hayley had her MRI at 1:00 p.m. this afternoon. She handled the contrast and sedation without any problem, and ravenously scarfed down a TON of food when she finished! Preliminary report is that everything looks great - a ton of improvement from last Saturday. The thought at the moment is that the "cloudy" areas are just fluid left over from the ear infection, and it should clear on its own. No need to have an ENT drain her ear at this point. Otherwise, not much to report. Her counts are still bottomed out; we hope they will start to rise soon so we can have a break at home. So far she's managed to stave off the fevers, which is great since she can continue to be "pole-less". In the meantime, Hayley's new favorite activity is pointing to all her body parts after being asked, "Where is your...nose, ear, hair, etc?" It is such a blessing to see her being so "normal" in spite of all the extraordinary circumstances. We so appreciate your continued prayers.
Love,
Dayna, Alan & especially Hayley

ps - New photos!

Wednesday, July 21, 2004 10:53 AM CDT

Just heard the results from the catscan. The internal nodules (bumps)have completely resolved! Praise God for that! She is definitely responding to this treatment!! BUT, (why is there always a but?!?), there is still something (possibly fluid or inflammation, hopefully NOT cancer) in and around her middle ear and mastoid bone (the bone that runs behind your ear). So, to get a better look, they will be doing an MRI tomorrow after all. Tomorrow will be the third day this week that Hayley hasn't been able to eat or drink, but hopefully this will give us the "final" look the doctors need. Overall, a good report that shows progress. Thanks for all those prayers! Keep 'em coming!

Tuesday, July 20, 2004 11:14 AM CDT

* New photos *

We finished our catscan!! Bonnie in radiology took great care of us this morning. Hayley conked out immediately with the sedation, and was back in her room playing by 10:45 this morning. We expect the results in a few hours.

5:00 p.m.
The radiologist told Dr. Lew that nothing sticks out from the catscan at first glance. Good news! However, they took nearly 100 images so the radiologist wanted until tomorrow to give an official report and do a detailed before/after comparison. So, we wait one more day. As always, we ask your prayers that the internal "nodules" are improving, and that her facial nerve would heal quickly. The doctors say it may take weeks to months to heal(We're hoping for weeks!). The external bumps are now all gone, with the exception of 4 "stubborn" spots on her left arm. We are so thankful!

Meanwhile, Hayley has been fever free for 48 hours so she is now "pole"less until another fever strikes. She had a fun day wandering around, and had two special visitors in the afternoon. Two Braves players, Charles Thomas and Sam McConnell, stopped by to visit all the kids in the AFLAC center, so Hayley had a great time with them. We'll try to post a picture of their meeting soon!

Alan and I are currently scheduled to meet with the transplant team at Egleston next Tuesday, the 27th. We should know something about bone marrow matches by that time. Please remember that in your prayers as well. In the meantime, we are thankful for each good day, and this was one of them!

Love,
Dayna, Alan & Hayley

"Even youths grow tired and weary, and young men stumble and fall, but those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint." Isaiah 40:30-31

Sunday, July 18, 2004 1:55 PM CDT

Monday 5:20 p.m.

Well, the radiology department didn't make any friends with the Thomson family today. The radiologist called around noon, wanting to switch to a catscan, as they might be able to get a better picture of her middle ear. Ok with us! Unfortunately, that's a different scheduling group, and at 2:30, the catscan folks called to say they couldn't fit Hayley in today at all. Mom was NOT happy!! :) Hayley was actually a great sport through all of it, but seems like these youngsters should have priority! In any case, we now have a catscan scheduled first thing tomorrow morning (or at least before noon!). Hopefully, it will bring good results. Not much else new to report. The bumps continue to shrink before our eyes, and we are so thankful. It's just a waiting game now, but sometimes that's the hardest part.
Thanks, as always, for your continued prayers. Together, we can do this!

On a lighter note, Hayley's photo made the AFLAC Christmas card catalogue. What a cutie!
_________________________
Monday, 9:00 a.m.

Still no definitive time for the MRI - most likely around 1 p.m. this afternoon. Hayley can't eat until it is over so it may be a long morning! Her heart rate and blood pressure are back to normal so the antibiotics seem to have taken care of any fever that might have been starting. We'll post again asap after the MRI results.

___________________________________

Sunday 2:00 p.m.

Hayley continues to be in a good mood, but must feel the need to keep things interesting. Her heart rate has been running high (180) with low blood pressure (89/39) so they've started the big gun antibiotics. The thought is that she may have a fever/infection, but is not showing the actual fever because of the steroids. It is purely precautionary as she's not acting sick in any other way. They've drawn blood cultures, which will hopefully come back negative tomorrow.

On to good news...
2 more bumps have disappeared! 11 to go...and fading fast.

We don't have a time for her MRI tomorrow yet, but will update when we know more.

Keep on praying!
Dayna, Alan & Hayley

Friday, July 16, 2004 1:35 PM CDT

Saturday 2:00 p.m.

Just 8 hours after her last dose of steroids yesterday, Hayley was already returning to normal. Today, she continues to be in a much better mood, roaming the halls, and usually, heading straight for the hospital refrigerator!! Her ANC (ability to fight infection) has now reached zero so she will be very vulnerable to infection until her counts begin recovering in about a week. There is some concern that the high dose steroids may "mask" a fever so the doctors are keeping a close watch on her blood pressure and heart rate over the next few days. If anything looks suspicious, they'll probably go ahead and start her on antibiotics, fever or not.

We continue to be astounded by your generosity, love and support. Just today as I was leaving the neighborhood, I was greeted by a big pink bow with a bunch of ribbons available beneath it. The ribbons are adorned with angels, and represent, "praying for Hayley." It was moving to say the least. Yesterday, another friend brought by Lance Armstrong "Live strong" bracelets. Merrill, facing her own transplant in just a few days, took time out yesterday to bring Hayley some of her "favorite things." Our sweet neighbors and friends have been mowing our yard for months now. We've had countless meals provided and toys given to Hayley. And most importantly, we've had your caring prayers & concern. You are all so appreciated. We know it's been a long road for you too, and we hope to one day repay your kindness.
With gratitude,
Dayna, Alan & Hayley
____________
Friday update:

A small step of progress...

Upon relapse diagnosis, Hayley had 14 leukemia "bumps" or nodules on her body in various places. One of those bumps was beneath her right eye. Well, today, I am happy to report that this particular bump is GONE, GONE, GONE!! You might remember, to be considered in "remission," Hayley will have to have clean marrow (not to be tested for 2 more weeks) and ALL the bumps will have to disappear. So, we still have 13 to go, but this is a definite baby step in the right direction, and indicates the chemo IS having an effect. We are also starting to see more movement in her left jaw/cheek region, indicating that the internal nodules may be responding as well. Thank you for all your powerful prayers - they are working! Dr. Lew even went as far as to say that he was "excited" by her response thus far.

Hayley's chemo officially "ended" today, but it will continue to work its magic over the next 7 days or so. At that point, Hayley's body should begin recovering, and hopefully start producing ONLY healthy cells. They will be keeping us in the hospital until this time; then we may get to come home for a week or so before starting a new round.

We pray the weekend brings more progress & "bump reduction," as well as a return to Hayley's cheerful self. Monday morning will bring another MRI to check the status of the middle-ear nodules.

Small signs of hope and progress. We couldn't be more grateful. Thank you all for your continued prayers.
Love,
Dayna, Alan & Hayley

Thursday, July 15, 2004 3:16 PM CDT

Hayley continues to redefine the word "grumpy," but otherwise is tolerating the chemo just fine. We are anxious for the end of the steroids tomorrow and a gradual return to her normal disposition!!

Tomorrow Hayley will receive the last chemo drug for this round, Mylotarg. Unlike most chemotherapy drugs which target all fast growing cells (the good & the bad), Mylotarg is very specific. Here's how it's supposed to work: Once infused, the Mylotarg will seek out any remaining myloblasts (the white cells in Hayley's body that have "gone bad"), and will attach to them. Once it attaches, it will inject a poison into those cells to kill them. It is a pretty cool concept, and we hope teamed with the broad-reaching 2-CDA, it will be the perfect combination. Please be praying that the Mylotarg will find EVERY LAST cancer cell in Hayley's body and take care of business!

Alan had the opportunity to speak with Dr. Mirro, chief medical officer with St. Jude's today. He confirmed that this was a great treatment to start with, a nice validation of our own doctors' thought process. He also promised his assistance with whatever additonal consults we may need down the road. Strength in numbers, as they say! :)

As we sign out, I wanted to share some words from a note we received in the mail yesterday...

"The water may be swirling,

The waves may be crashing,

But you are standing on the solid rock of God's love...

...And that puts you on the highest possible ground."

"He set my feet upon a rock, making my footsteps firm." Psalm 40:2

Keep on praying,
Dayna, Alan & Hayley

Wednesday, July 14, 2004 4:37 PM CDT

A quick note to check in. Hayley has had a pretty good day. The chemotherapy continues to work its magic and Hayley's blood counts continue to drop -- again no leukemia "blasts" in her blood. Dr. Lew has noticed some particles in her blood work which can be associated with the "death" of leukemia cells , a good sign. Regarding the bumps, the consensus seems to be that the bumps are improving ever so slightly, or at the very least, not getting worse... another good sign.

The hardest part of the day today has just been the toll that this round of medications (chemo, steroids, and antibiotics)has taken on Hayley. Though she blessed us with a couple of smiles, they certainly are coming with less frequency.

I wish I could share with you the stories of each and every child at the AFLAC Cancer Center. There are certainly some special kids and parents on our Hall. Some are newly diagnosed and others are well into their treatment plans; others are facing relapse monsters of their own. We will try to share some of these other stories over the next several months. Even when it is not by name, please remember all of the other kids that are Hayley's friends and hallmates in your prayers.

Thank you for checking in...we love you!

Dayna, Alan & Hayley

Tuesday, July 13, 2004 3:41 PM CDT

Not much new to report today, and that's not a bad thing! They can no longer find any blasts (cancer cells) in Hayley's blood and her white cells are dropping, so the chemo appears to be doing its job. The doctors tell us that the next visible sign of whether or not this chemo is heading us back towards remission will be the shrinking of the "bumps." They generally expect this to happen 1-2 weeks from starting the chemo, ideally by the end of the week. Please be praying for this! Hayley is a bit grumpy from the steroids, but that is pretty typical of most children. Her mood should improve drastically on Friday, when this round of chemo ends.

We want to thank you again for each and every message, e-mail and phone call. Although we can't respond to all of them individually, know that we're receiving them, and that they are sustaining us on this journey. You are all such a blessing to us!!
With love,
Dayna, Alan & Hayley

Monday, July 12, 2004 8:52 AM CDT

8:00 p.m.
I'm going to cut right to the chase and give you the best news we heard all day. Hayley's spinal fluid came back NEGATIVE!!!! Her cancer has not spread to the central nervous system (Relapse is limited to bone marrow & skin). Hallelujah! This is a HUGE answered prayer. If it had spread to her CNS, it would have mandated brain radiation prior to transplant as well as bi-weekly spinal taps for an undetermined length of time. We are grateful to be spared that additional treatment. Other good news today included seeing several old AFLAC friends - including Jack Sanders, the 9-year-old whom we had asked prayer for previously. You'll be happy to know I first spotted him, running through the halls trying to avoid the clowns!! Also, Carmel's Dad & brother came to visit. The Ast family was the very first family we met after initial diagnosis, and they have been such a continual blessing to us. For those of you who know them, Carmel is doing great 80 days post-transplant. And lastly, we were blessed to have several elders come down from the church to pray over Hayley this afternoon. Thank you!!

A brief medical update: The doctors have added a pretty whopping dose of Decadron, a steroid, to Hayley's chemo. The thought is that the Decadron may reduce the swelling and inflamation around the compressed nerve. This is one huge area for prayer right now. The doctors are hoping to see the pressure on the nerve alleviate by the weekend. The sooner the nerve can start repairing, the better it will be for elimination of the facial palsy. This will also be a sign that the internal masses are disappearing.

Alan & I were both HLA typed today and proudly wore our snoopy bandaids. They will be sending all of our bloodwork out tonight to begin the search for a marrow donor. Please be praying for this as well - I know you are! The chances of parents being a match is extremely low (not that we put much weight in statistics anymore!); but you should know they primarily typed us to get a better overall picture of Hayley's blood. Alan & I both asked to be placed on the registry permanently. I can only hope that one day I will have the privilige to donate for someone else!

We can't thank you enough for your sweet guestbook messages, e-mails and phone calls. The love and concern we've received from friends, family and complete strangers is overwhelming. One day at a time, we are on the road to remission so keep those prayers coming!
With love & gratitude,
Dayna, Alan & Hayley

9:30 a.m.
I stayed at the hospital with Hayley last night, and since I haven't mastered the art of sleeping here like Alan, I had a lot of thinking time on my hands. I know that those of you who have been diligently praying for Hayley over the past 5 months are probably feeling a bit defeated, much like our family was on Friday. But last night, I remembered a story that I want to share with you. It is about a little girl named Jenna. I met Jenna and her Mom during our last chemo admit at Scottish Rite. They were here for a yearly check-up (she is at the point kids are considered "cured" and have to come very infrequently), and came to visit the nurses. One of the nurses happened to think of Hayley, and pulled me out of the room. Jenna's Mom shared with me that Jenna was diagnosed with AML around 8 months of age. She went into remission on the chemo-only course, but then relapsed during the first year. She, too, had no sibling match, but they got her back into remission, found an unrelated donor and went to transplant. I want you all to know that when I saw Jenna she was a healthy, happy, vibrant 7-year-old with a thick head of hair down to her bottom. At the time I heard her story, I was obviously delighted to have met them, but thought in the back of my head. "Too bad I couldn't have met them 4 months ago, when we were at the beginning of the process. After all, we're almost done now." Well, I now know beyond any shadow of a doubt that God arranged that meeting between Jenna, her Mom & me. He knew how much I would need her story in the coming month. His timing was perfect. The circumstances surrounding their relapse are too similar (I have to imagine the odds of that in general are 1 in 500,000). The odds that I would meet that family even less. It was no coincidence that we met, and knowing that God was in control of that meeting, gives me 100 percent confidence that we can get through this trial. Jenna's story and face has re-energized me, and I hope it will do the same for all of you. We need you up and ready for the fight 'cause it's going to be one heck of a battle.

"For nothing is impossible with God." Luke 1:37

A quick Hayley update - Her peripheral blood blasts are down to 1 percent today so the chemo is at least partially working. Thank you, Jesus, for this small step forward.

Sunday, July 11, 2004 10:46 AM CDT

7:30 p.m.
Today was relatively boring, a nice change of pace from the chaos of yesterday. The chemo is flowing, and we feel like we are actively fighting again. Hayley continues to be mostly in happy spirits!

Tomorrow will be a busy day. We will all be HLA typed; this is the criteria they use to determine bone marrow matches. It will be several weeks before we get the results, but we are starting the process asap. We will also find out whether or not her spinal fluid was clean or if she has relapsed there as well. We may even get our first 'early' glimpse of whether or not the chemo is having any effect when we get her bloodwork back.

To give you an idea of how aggressive this cancer is, yesterday Hayley's blood still showed 0 percent blasts (for the non-medical among you; blasts are basically equivalent to cancer cells). Today, her blood already contained 11 percent blasts. So, it is a great thing that we've already got her treatment rolling. Our primary goal right now is to see these numbers heading down to zero again and reduction of the 'bumps', which will put her back into remission. Please continue sending those powerful prayers for healing heavenward. We can do this!!



10:30 a.m.

A blessedly uneventful day thus far. After a good night's rest, they hung Hayley's chemo bag at 10:30 a.m. this morning. Amy, our sweet nurse today, told us she said a special blessing over it as they were getting it ready. Chemo concoctions can be many different colors - Hayley's today is a pretty clearish/silver liquid. Strange as it is to say, that bag of chemo is a surprisingly beautiful thing. To us, it is a bag full of hope!

Saturday, July 10, 2004 3:32 PM CDT

9:00 p.m.

Without question, walking back onto the AFLAC Cancer Center today was the hardest thing we have ever had to do. But we got through it, and we could not have asked for a sweeter group of people to greet us with hugs and tears, and reassurance that we can get through this. And get through it we will. There is no question that this is a major setback. But it is only a setback; it is not the end of the road or the end of hope. We cannot begin to comprehend why this is happening, but we are believing it gives God a great opportunity to work an even bigger miracle.

I know you are anxious to know the results of Hayley's tests today. The MRI showed that indeed, it is the internal "bumps" or AML masses that are causing the pressure on the nerve in her middle ear. The good news from the MRI is that there were no masses anywhere else - none in her brain, etc. As Grandpa reported, the doctors already can tell that she has relapsed in her bone marrow in addition to the skin. As a result, her chemo will begin asap, likely tomorrow morning. Dr. Lew spent hours today consulting with other doctors on the best treatment approach, and they have settled on a combination of two chemo drugs given over 5 days- 2-CDA and Mylotarg. In many respects, it is a "lighter" chemo than she has endured in the past; but it is different, and we hope, more targeted. Mylotarg is the latest "breakthrough" drug in treating adult AML; the results in children are less well known. The hope and number one goal here is to get her back into remission - however many rounds that may take. We won't have a total picture of whether or not this particular drug combination is working for 3-4 weeks. She may quickly go into remission or it may take several rounds of this chemo or differnt alternatives. There are stronger chemo treatments waiting in our back pocket. The doctors are walking a fine line right now between killing the cancer and risking permanent damage to her heart. So, we are starting with the non-heart affecting drugs.

As for the facial palsy, the doctors believe that this is temporary. As the chemo shrinks her masses, the pressure on her nerve should alleviate, and the nerve should repair itself. Whether this will take days, weeks or months is unknown. On a purely selfish note, we ask your prayers that it heals quickly. Her crooked little smile fills our hearts with joy, but simultaneously breaks it into a million pieces.

Now, on to some of the praiseworthy news today:

1) Hayley is not in any pain from her bone marrow aspiration. Last time, it took her 3 days to put weight on her legs. This time, she has had no ill effects - walking around with ease.

2) Hayley also had an echocardiogram performed this evening to evaluate her heart function. The technician said her heart looks fabulous, in spite of the intense chemo she has had previously!! This gives us more options down the road.

3)Despite her marrow, Hayley's peripheral blood counts still look great. Her platelet and hemoglobin numbers are all normal, which means no immediate transfusions will be necessary.

4) Hayley's spirit is unstoppable. I can't imagine what her body must be going through as the cancer tries to take back over. Yet, she played peekabo with the MRI doctor, gave minimal protest at all the tests today, walked miles around her new hospital room chatting away and gave us that crooked grin more times than we could have imagined.

We are taking our cue from her. We will fight this crummy disease with every ounce of strength we have. We know there are no guarantees, but we are believing we will beat this thing from the tops of our heads down to our toes. Tomorrow is a new day. Game faces are on.

"The angel of the Lord encamps around those who fear him, and he delivers them." Psalm 34:6

Keep on praying,
Dayna, Alan & Hayley



3:30 p.m.

Grandpa reporting in...

While at the emergency room, we learned from Doctor Lew that they already know from yesterday's bone marrow test that it is not clean. Therefore her chemo treatment will begin tomorrow. As of 4pm, Hayley has completed her MRI (no results yet) and returned to her home-away-from-home, the AFLAC Cancer Center. Sad to be here, but a nice reunion with our many friends. Hayley is pretty tired from an eventful day but settling into room 316 with Mom, Dad, Grammie and Grandpa and Nana is arriving from Washington tonight.

Saturday, July 10, 2004 10:44 AM CDT

Well, we've managed to land ourselves back at Scottish Rite in less than 24 hours. The good news is Hayley slept soundly through the night for the first time in several days, so we were optimistic that the antibiotics given to her yesterday were kicking the ear infection and relieving the pain. We all managed to get a decent night's sleep in spite of everything that's happened. Thank you God, for that! When she woke up this morning, however, we immediately noticed that she had no control of the left side of her face (her mouth and eyes did not move with the other side). Needless to say, we were scared to death. A quick call to the doctor relieved our minds a little. The facial palsy is caused by something applying pressure to a nerve in her head - we've been told that "something" could be the ear infection itself; it could be that she has an internal 'bump'; or it might be some sort of virus causing all of this to happen. It's all very treatable - we just need to determine the root cause.

So, as I write, we are in the emergency room, waiting for an MRI to give us more answers. The MRI is currently scheduled for 1:30 p.m. this afternoon. She will have to be sedated for this procedure. Please pray that God will wrap his arms around her during this test and give the doctors the answers they need. Your prayers are so very much appreciated.
Dayna, Alan & especially Hayley

Friday, July 9, 2004 2:21 PM CDT

Our sweet little girl has relapsed. It is painful to write those words right now – it just doesn’t seem possible when we were so close to finishing her treatment. To say we were blindsided by the news at today’s appointment is a drastic understatement. As those of you who follow her Web page know, she has had some mysterious “bumps” for a few weeks. A minor annoyance, we thought – as did Hayley’s doctors, but we biopsied them on Tuesday to find out for sure what they were. Well, the biopsy results came back this morning, and they indicate that the “bumps” are leukemia of the skin…in other words, a relapse of her AML, which has presented in the skin. We didn’t think there could be anything worse than initial diagnosis, but without question, this is it. We are completely and utterly devastated. As we may have mentioned to some of you, the prognosis for relapsed AML is not pretty (20-30 percent). But we know God is bigger than any statistic and are putting our faith in Him alone.

The road forward right now is a bit uncertain – other than the fact that it will end with a bone marrow transplant. In spite of the “skin” diagnosis, Hayley’s blood counts are still great – nothing to indicate relapse. The doctors decided to do a “spur of the moment” bone marrow aspiration to see if she has relapsed in her bone marrow at today’s appointment, which meant she was awake for the procedure (usually patients are completely knocked out). She was a trooper, as always. The only main significance of checking her marrow is timing. If she has NOT relapsed in the bone marrow, it buys us a little time. At that point, they would probably biopsy another bump to make absolutely certain she really has relapsed, and we could take our time deciding on a treatment path. If she HAS relapsed in the bone marrow, she will likely start intense chemotherapy of some variety next week. They have to get her back into remission before they can do the bone marrow transplant. We will not get the results of the aspiration until Monday or Tuesday so it will be a long weekend, full of unknowns.

Whatever the outcome, we know our little girl needs a BIG miracle. Specific prayer requests for the next few days…

1) That the pathologist is WRONG! (Very unlikely, but HUGE miracle opportunity here)

2) That the bone marrow test come back negative for relapse to buy us some time.

3) For wisdom for Hayley’s doctors as they try to determine a treatment plan. There are several options we will have to decide between, and the doctors were almost as blindsided as we were today. In spite of the horrible news, today made it very clear to me how much these doctors love our little girl. They were fighting back the tears right along with our free-flowing ones.

4) That we find a bone marrow match. This is a several week process. Fortunately, the doctors believe there is high likelihood of a match in either the national bone marrow registry and/or the cord blood registry, but this is HUGE. It will be critical for her treatment to have a match. (I know many of you will offer to run out and be tested right away. At this point, that’s not necessary, but we’ll certainly let you know).

5) That we be able to get her back into remission with whatever treatment plan is chosen. She cannot have the transplant if they can’t get her into remission again.

6) For relief from Hayley’s ear infection (Did I even mention that she also has a nasty ear infection? Minor in the big scheme of things, but making life uncomfortable for her right now)

7) For rest and strength for our family.

Coveting your prayers,

Dayna, Alan & Hayley

Friday, July 9, 2004 1:07 PM CDT

Our sweet little girl has relapsed. It is painful to write those words right now – it just doesn’t seem possible when we were so close to finishing her treatment. To say we were blindsided by the news at today’s appointment is a drastic understatement. As those of you who follow her Web page know, she has had some mysterious “bumps” for a few weeks. A minor annoyance, we thought – as did Hayley’s doctors, but we biopsied them on Tuesday to find out for sure what they were. Well, the biopsy results came back this morning, and they indicate that the “bumps” are leukemia of the skin…in other words, a relapse of her AML, which has presented in the skin. We didn’t think there could be anything worse than initial diagnosis, but without question, this is it. We are completely and utterly devastated. As we may have mentioned to some of you, the prognosis for relapsed AML is not pretty (20-30 percent). But we know God is bigger than any statistic and are putting our faith in Him alone.

The road forward right now is a bit uncertain – other than the fact that it will end with a bone marrow transplant. In spite of the “skin” diagnosis, Hayley’s blood counts are still great – nothing to indicate relapse. The doctors decided to do a “spur of the moment” bone marrow aspiration to see if she has relapsed in her bone marrow at today’s appointment, which meant she was awake for the procedure (usually patients are completely knocked out). She was a trooper, as always. The only main significance of checking her marrow is timing. If she has NOT relapsed in the bone marrow, it buys us a little time. At that point, they would probably biopsy another bump to make absolutely certain she really has relapsed, and we could take our time deciding on a treatment path. If she HAS relapsed in the bone marrow, she will likely start intense chemotherapy of some variety next week. They have to get her back into remission before they can do the bone marrow transplant. We will not get the results of the aspiration until Monday or Tuesday so it will be a long weekend, full of unknowns.

Whatever the outcome, we know our little girl needs a BIG miracle. Specific prayer requests for the next few days…

1)That the pathologist is WRONG! (Very unlikely, but HUGE miracle opportunity here)
2)That the bone marrow test come back negative for relapse to buy us some time.
3)For wisdom for Hayley’s doctors as they try to determine a treatment plan. There are several options we will have to decide between, and the doctors were almost as blindsided as we were today. In spite of the horrible news, today made it very clear to me how much these doctors love our little girl. They were fighting back the tears right along with our free-flowing ones.
4)That we find a bone marrow match. This is a several week process. Fortunately, the doctors believe there is high likelihood of a match in either the national bone marrow registry and/or the cord blood registry, but this is HUGE. It will be critical for her treatment to have a match. (I know many of you will offer to run out and be tested right away. At this point, that’s not necessary, but we’ll certainly let you know).
5)That we be able to get her back into remission with whatever treatment plan is chosen. She cannot have the transplant if they can’t get her into remission again.
6)For relief from Hayley’s ear infection (Did I even mention that she also has a nasty ear infection? Minor in the big scheme of things, but making life uncomfortable for her right now)
7)For rest and strength for our family.

Please pray harder than ever before. We desperately need it.

Dayna, Alan & Hayley

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