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Thursday, October 23, 2008 2:39 PM CDT

Well Coley, we are having a hard time believing it has been 4 years since you went to heaven. I miss you so much (and Lamby), it is a heartache that can't be explained to anyone. I see it in Daddy's face everyday and Marissa misses you just the same. This would have been the year you went to Middle School with her. Marissa and I cried the first day when all your friends were waiting at the bus stop for their first day at the Middle School (Stacy, Katie, Erin and of course Taylor-who still visits you).

I am sure you are looking down at your two crazy brothers. Travis talks about all the silling things you two used to do together that Mom and Dad never knew about. He still makes us laugh everyday just like when the two of you were inseparable. Nicolas, who is named after you, wishes he met you and knows you were the special angel that brought him home from Russia.

Daddy is working so much and so hard. You need to be his special angel too.

There isn't a day that doesn't go by that we don't think of you. You were one special child here on earth and hopefully are in a very special place looking down on us.

Yesterday was a really hard day but 3 of my good friends (Paula,Donna and Deb) took me out to lunch, remembering it was the day God took you. I saw Jodi at the gym who knew it was a special day and I remember all the hard work she did when we were away in NYC trying to make you better. Patti was working at the restaurant and we wished she could of joined us for lunch too. She is always helpful and an inspiration.

We all went to church for you on Sunday (Daddy, Mom, Marissa, Travis and Nick). It was beautiful for me to have my whole family there and Papa and GG and Jen and of course Father Mike. Bubbie and Zadie stopped by with Taylor and Jason. Mary came by, with Matt,like every year with a dozen orange roses for me and stayed for awhile to keep me company. I got to talk to Danyell and meet her kitty "Tink" named after your favorite character.

Kelli, John, Zoe and Zach went to church on Sunday too after we got home from our trip to NYC. I thought about you the whole time that Marissa, Zoe, Kelli and I were there (especially at the American Girl Doll Store). You had more dolls and clothes than anyone I know but it kept you happy and busy in the hospital especially when Yvette's doll would have sleepovers with yours!

Take care of all those special children battling FA and cancer. We have been doing a good job of raising funds for FA in memory of you (over $100K to date)thanks to all of our family and friends.

Use your angel powers to keep Deb,Rhonda and Kathy strong and disease free.

Love You Baby Doll, Mommy

Forgot to add one more important event from this day. Jeff, who you always called Jeffrey stopped his car when I was waiting for Marissa to get off the bus and he and Payton were listening to Annie songs. That had to be a sign! It made my day!

Monday, October 22, 2007 8:26 PM CDT

Just a quick post today...

Three years ago today we lost our daughter, sister, grand daughter, niece, friend and hero. It is amazing how time can pass and yet seem to stand still at the same time. Our days and years continue to march on with the busy tempo of life -- but we are constantly brought back to the vivid memories of 2004, especially this date. Ironically, although that entire experience is one that every family dreads, it provides us with our most vivid memories of this most remarkable child....months and months of 'Coley being Coley'.


A few messages from our Angel this weekend:

1. Ofcourse the remarkable weekend comeback of her beloved Sox.
2. When Kristin and I were driving to the airport in Miami today (on our way home from watching her Patriots put a spanking on the Dolphins), we came upon the most perfect rainbow. A complete arch with vivid colors.
3. We visited her at the cemetary this afternoon with the kids. As the kids were wandering around the grounds, a sudden, strong breeze kicked up blowing a whole bunch of Orange leaves off the trees. As Marissa, Travis and Nicolas chased them around while laughing, Kristin and I looked at each other with the same thought.... "Coley is playing with her brothers and sister". We watched them for the next 10 minutes just chase leaves and then throw them up in the air. And then they each placed one on her stone. Quite an experience.

Surely our baby is still with us...

Monday, July 23, 2007 9:04 PM CDT

Well it's been quite a while once again since we've updated. A lot has happened since we last posted.

After a crazy spring at work, we all took a vacation down to Marco Island with the kids. It was a great getaway.

The kids hung out at the pool

and chilled at the beach


After the vacation it was right to work on Coley's Cause Golf Tournament. Another great success on a beautiful golf day. Our best year yet and we just sent in a check for $27,000 to the Fanconi Anemia Research Fund! We had a number of FA families with us this year. And as always, Yvette and Maya.

Here's a great picture from the event. Pictured with us are the Vangel family, Young family, Doreen and Jordan Flynn, Ed Duffy and Yvette & Maya


This year's tournament winners were Jared Walbridge (Kristin's brother), his brother in law Nick Sinerate, father in law Jim Sinerate and Ryan Marini



The kids celebrated their birthday parties with their friends in late June.






Nicole's birthday ofcourse was June 30th. It is hard to believe our little girl would be 9. We miss her more and more as each day/month/year passes. This year her birthday was marked by a very special occasion. Her best friend Taylor Poulin has been growing her hair for over a year with the goal of donating it to Locks of Love in Coley's honor. She wanted to have it cut on Coley's birthday. She asked us to do the honor. We are so proud of her!





Just days later, another friend Ally Wilder did the same in honor of Coley.

In late June, Marissa participated in her first dance rectial and did a great job.



An finally...on the life-events front:

- Uncle Mark and Juliann had a baby boy "Little Marky" Walbridge
- Uncle Mark and Donna had twin girls, Emma and Anna (for Coley) Levine

- Coley's Oncology doctor from Dana Farber Christy Duncan got married to Kristin's brother Jared's brother-in-law Nick Sinerate. We had the honor of setting them up following the first Coley's Cause tournament. How life works sometimes :-)

We'll be attending Camp Sunshine in Maine with the rest of our Fanconi Anemia family in mid-August. It will be good to see all the families and staff hard at work on the FA front.

So now your all caught up!

Tuesday, February 20, 2007 7:11 PM CST

It's hard to believe we have passed over 2 years without Coley. It hasn't become easier but the memories become stronger and thanfully, funnier because of her wonderful personality we were blessed with. We see some of her in Nicolas. She sent us a very energetic but smart little boy.

Travis and Nicolas are doing well in school and enjoying each other and their friends. Marissa broke her arm last week skating on the outdoor rink Dad built for the kids. She was becoming very confident on her hockey skates and thinking about girl's hockey. She's on hold from everything in sports for a few months. Travis and Nick are becoming very good skaters and also want to play hockey.

Coley's best friend Taylor plans to cut her beautiful hair on June 30 (Nicole's birthday) to donate to Locks for Love.

We were saddened by the loss of another FA family member- Nina.

We think of all the children battling FA and cancer everyday and pray Nicole will help you through your fight.

We scheduled the 3rd annual Coley's Cause golf tournament at Poquoy Brook on Friday, June 15. The website for registration, donations and sponsors will be updated soon.

Tuesday, October 3, 2006 8:21 PM CDT

SWEET TINKERBELL



BEST FRIEND TAYLOR



SCARY CREW



PUMPKIN CARVING IN '03



CLASSIC COLEY


We are coming upon Coley's 2nd anniversary and it hasn't become any easier. Although, we are doing well and Marissa, Travis and Nick keep us very busy. Nick keeps us more busy than we would like to be on many days! Coley sent us a real energetic one! We could have a separate website on Nick!

The 2nd annual golf tournament went extremely well. Thanks to all of our wonderful sponsors, golfers and donors of raffle and auction items.

We had a bone marrow drive on September 16 for the Flynn family that have 3 girls with Fanconi Anemia. Our friend Beth helped in many ways with the event.

Nick is in full day kindergarten, Travis is in 1st grade and Marissa is in Middle School! I keep busy volunteering at the schools and coming and going with the kids sports. It is hard at times being in Nicole's school but working with the staff and friends helps.

The kids had a great summer swimming and playing tennis at a local club. I got back into tennis after many years. Todd played a bit too - with a temper!

Todd has been very busy at work, traveling and coaching 7th and 8th grade football.

Thanks to my wonderful friends I got away last weekend without kids to Nantucket. It was much needed and an extremely good time.

Thanks to our family and friends we made it through the second year of life without Coley.

Tuesday, April 25, 2006 1:15 PM CDT

NEWS UPDATE:

Coley's Cause was featured on Boston's Channel 56. To view the awesome segment, click HERE Scroll down to the "Your Family's Health" area and open the 4/27 "Girl's Legacy Lives on After Death" video


See if you can determine the common theme in these pictures....

Monday, April 3, 2006 7:01 AM CDT

Here's a cute couple of pictures from Central Park. We stopped to have Coley's caricature done. Notice from the starting point to the finish, she's in the exact same position. I think she wanted it to come out perfect (it did). The best part was just watching her doing her best not to flinch a muscle. Though she did add just a touch of smile at the end....

Monday, March 20, 2006 9:26 PM CST

Kristin will hate me for this, with her mask and all....but I just really love this picture and the sweet look on Coley's face. Taken during her first BMT.

Also, please keep sweet Hunter in your prayers. We were in Children's hospital together in Dec. 03. She and Coley were diagnosed with Leukemia days apart. After just recently finishing 2 1/2 years of treatment she has relapsed and is being treated again. Thank you!

Sunday, March 5, 2006 7:19 PM CST

On a fundraising note, the 2nd Annual Coley's Cause Memorial Golf Tournament is being held on June 16th. Check out our new website for more information at Coley's Cause

Here's a picture of Coley with three staples of her NY stay: Kit, Lamby and Papa. This was taken just before her second transplant...evident by the length of her hair.

Sunday, February 19, 2006 8:52 PM CST

Here's a picture that captures the essence of Coley. It's amazing what you'll find time to do when you're in isolation for weeks on end. Coley had a blast creating this "masterpiece" which is now framed and hanging proudly in our house...

Thursday, January 26, 2006 8:58 PM CST

This week's picture is a favorite of ours. Coley and her best friend Taylor at their Kindergarten graduation ceremony, June 2004. The teachers and parents were kind enough to hold the event outside just for Nicole. We know that Taylor misses Nicole very much, but we're sure she's looking down on her with love.

Wednesday, January 18, 2006 7:50 PM CST

Love this picture of the kids. Lapping up the leftovers of cupcake mix. A familiar 'devilish' look in Coley's eyes. Likely that she was the mastermind behind this plan.


Special Update: Please pay a visit to our friend hunter . She sucessfully finished all of her treatment and is now cancer free. Way to go Hunter.

Thursday, January 12, 2006 10:58 PM CST

His a new picture for the season...

Coley's first time on skis at King Pine mountain with Marissa. She was never one for extended periods of time out in the cold....which all made perfect sense later unfortunately. But being the little daredevil she was, she loved to go tubing and looked like skiing was going to be a natural activity for her. Look on her face tells you how sensitive her eyes were to sun as well. Should have told Marissa to give her the goggles...

Friday, January 6, 2006 10:03 PM CST

Just a quick picture update this week. Coley loved to go for walks in "Central" whenever she could. During this walk a bunch of wacky roller bladers were having a party with blaring music. We climbed to higher ground to get a better look and Coley started "Boogie-ing". She was never the shy one, that's for sure.

This one always cracks me up....





See ya next week.

Friday, December 30, 2005 9:34 PM CST

Hope everyone had themselves a great Christmas and Hanukkah! The kids had a great time and it was a blast watching Nick tear through all of his gifts.

Have a safe and Happy New Year.


Here's a picture that just has "Coley" written all over it..




Sitting atop Kristin's cousin Laura's bug. She loved that car! I always said she and Laura were kindred spirits. They had quite a little bond between them.

Friday, December 23, 2005 2:20 PM CST

This week's entry is dedicated to one of the most special people that entered our lives during Coley's treatment in NY. Her nurse Yvette was Coley's own little protector, always taking extra measures to make sure everything was in place....all "i"'s dotted and all "t"'s crossed. She broke several rules along the way, but the benefits were immeasurable.

Coley was always excited (as were we)when Yvette was on duty because she was so playful and attentive. It also gave us an extra peace of mind when she was there. Through our journey, she became more than just a nurse. Rather she was a cherished friend, with whom we are still close today.

We will always be grateful for the extra special care that Yvette provided to Nicole.



YVETTE WITH COLEY AFTER SHE GAVE HER A HAIRCUT (WITH BANGS)



STANDING WATCH AS COLEY GETS HER FIRST BONE MARROW TRANSPLANT



PLAYING WITH EACH OTHERS AMERICAN GIRL DOLLS (Yvette got one just so they could play together)



SHARING A SONG WITH COLEY AT A RESTAURANT



WITH OUR FAMILY FOR DINNER BEFORE WE LEFT NY FOR GOOD



JOINING US FOR THE LIGHT THE NITE WALK - SEPT. 04




One of the most touching photos we have. Just before Coley died, Yvette came to visit in Boston. Nicole was very sedated and hardly talking or moving. When Yvette sat at the edge of her bed, Nicole heard her voice and literally climbed up Yvette's body like a scared cat would climb a tree looking for comfort. It was one of the most amazing things we've ever seen. To this day, we don't know how Coley mustered the energy to do what she did.





Joining us for the first Coley's Cause Golf Tournament




Thanks again for everything Yvette. We'll see you soon.

Merry Christmas, Happy Hannukah and Happy New Year to all our friends.

Thursday, December 15, 2005 2:18 PM CST

Not so much a journal entry this week, just an update on the Picture of the Week theme for those of you still hanging in there and checking this site...

A TRIBUTE TO LAMBY.

From the day she was born, in times of sleep or comfort Lamby could always be found tucked into crease of Coley's arm (just as you see below). As with most kids' comfort animals or blankets, you could not put a price on the peace of mind she provided. Never was she more of a comfort to Coley than when she was being treated in the hospital. Coley has Lamby with her now...





















WE MISS THEM BOTH VERY MUCH.

Thursday, December 8, 2005 11:48 AM CST

Hello again folks,

As we immerse ourselves in yet another holiday season, thought we'd check in with you all. Things are going pretty well at home. Nicolas is adjusting well and he and Travis are really having a ball together. Travis is pulling him in to his "Star Wars" web, so we get a lot of Light Saber (or "Life Saver" if you say it like Trav) action around the house. Valuables have been stowed! He's still a bit of a wild man and we often feel like we're trying to break a wild horse. We are so happy he's with us. Of course Marissa dotes on him like a second mother. The boys don't realize how good they have it with her. We know that Nick is happy to be here too. If we're flipping through pictures on the computer and he see's one of his old home he quickly motions to get it off the screen and says "no Russia". Pretty amazing (and sad). But he knows where home is now. He also knows about Coley--with all the pictures around-- and usually when asked where she is, he'll point to the sky.

Nicolas is in the public Pre-K school 4 days a week now. He likes it and Kristin is MORE than happy to drop him off in the AM to enjoy a little Free Time. His teachers are really impressed with how smart he is.....no, really! His language is coming along well and he understands everything now (read: no more excuses!).

Marissa and Travis are doing well in school too. Basketball season is soon to be underway for the both of them. Can't wait to see Travis handle the "rock".

We had Thanksgiving at our house this year for the first time. The whole Levine clan came over which was really cool. Kristin did a great job!! Next year, the Walbridges! Decorations have been installed for the winter holidays -- complete with Coley's orange candle that stays lit in the 2nd floor center window. The kids are really looking forward to the holidays. Even Nick has his gifts picked out from the catalogs. One phrase he has down pat is "Can I have....".

That's about it from here for now. We all still miss Coley terribly and think of her every day (lots of days, every moment). This season again will be bitter-sweet.

In effort to stay more current with this site, we thought we'd post a "picture of the week". Not that most of us need help keeping Coley in our thoughts. Just thought it would be a neat thing to do.



Here's one my Dad will really love! Me and Coley mounted up on my motorcycle. She loved sitting on it and reving the engine. She always had to be first! Then she'd get down and book around on her toy Harley Davidson.

Wishing all a great Holiday Season!

Todd, Kristin, Marissa, Travis and Nicolas

Monday, September 19, 2005 9:37 PM CDT

Hello....if anyone is still checking Coley's website.

It certainly has been quite some time since we've updated this page. A lot has happened since March. Let's begin with the most important. We have a new addition to our family as of August 27th. We brought Nicolas Konstantin Levine back from Voronezh, Russia. He's a great little 4 year old, with quite a troubled past....but you wouldn't know it to see him now. Marissa & Travis asked if we could name him after Nicole.....thus, Nicolas. We're working through the language barriers and he's a smart little guy who's picking up English pretty well. We're all learning a little Russian along the way too. All the kids are getting along really well together, and it seems Nick is really loving life in America.

(Pictures of Nick added)

Let's see, what else...

The MOMS Club of Raynham dedicated a tree in Nicole's memory at the Raynham Youth Soccer complex while we were in Russia visiting Nick. It's a beautiful tree with a stone at the base that reads "In memory of Coley Levine, Forever in our Hearts". Thanks to the MOMs Club!!

Ofcourse we had our 1st Annual Coley's Cause Memorial Golf Tournament in June to benefit the Fanconi Anemia Research Fund. It was an awesome event which raised over $32,000 dollars. Quite an accomplishment for the first year. We are truly grateful for all our sponsors and participants. We are getting ready to gear up for planning for next year to raise even more money. A Bridgewater-Raynham scholarship has also been established in Coley's memory to be awareded to a Raynham graduate. This year's scholarship went to Andrea Berardi (she's the sister of Coley's good bud Christina [Goose]).

We also were honored, along with Margaret Regan, to receive an award at this year's Leukemia and Lymphoma Society's year-end award's ceremony. Team Coley was BY FAR the largest non-corporate fundraiser at last year's Light the Night walk on Boston Common. It was a bitter-sweet night as we heard story upon story of people beating the odds and thriving after their diagnosis. Nonetheless, we were proud to address the crowd in honor of our heroine. Which brings me to this public service announcement...

It's not too late to sign up to walk with Team Coley on September 29th on the Boston Common for Light the Night 2005. If you would like to walk, please register at:
Light the Night Select the Boston walk and register for Team Coley. Please then send Margaret Regan an email (mcregan@verizon.net) so she can track our team members. If you are unable to walk please consider visiting our Team Coley website and making a donation in Nicole's memory.

We'll be sending out more information shortly, but the walk is Thursday evening, September 29. If your walking, please wear an Orange shirt!

What else? Oh yeah, Coley's uncle Jared got engaged to his girlfriend Jaime. They'll be married next summer down the cape. Congrats!!

Please say a prayer for all the little warriors still battling Fanconi anemia on a daily basis, and those, like Coley who lost in a courageous fight. Find out more about these kids at Fanconi Family webpages .

Sorry for the long delay in updating the page. Hope to see you soon.

Todd & Kristin.

Tuesday, March 8, 2005 8:37 PM CST

Hello all....

Just a quick note to let everyone/anyone know that things continue to go OK. We also wanted to make you aware of an event we're hosting in a few of months.

On Friday June 17th, we'll be holding the First Annual Coley's Cause Memorial Golf Tournament. The proceeds will go toward the Fanconi Anemia Research Fund as well as to establish a scholarship in Coley's name for a Raynham graduate of Bridgewater-Raynham HS.

It will be held at Poquoy Brook CC in Lakeville, MA and will be a 8:00 shotgun start. After the golf, there will be a dinner, auction, prizes and more. If you're interested in playing, please visit our tournament website

The site is a work in progress right now so check it out and keep coming back for more updated info.

Todd & Kristin

Saturday, January 29, 2005 9:26 PM CST

Hello to all that may still be checking into our page...

It's been a while since we've updated, but it's been a busy holiday season and Marissa & Travis have been enjoying their winter so far. Just after Christmas, we went up to NH with the kids and Kristin's family. The kids had a great time skiing and tubing. Marissa has become quite the little skier...Travis is still just a rolling snowball, but he seemed to like being out there.

We just returned tonite from a 7 day Disney cruise. We went with 8 other Raynham families (41 of us in all). It was a terrific time....good weather, lots of sun and ofcourse food. We stopped in St. Maarten, St. Thomas and Disney's Castaway Cay. Marissa and Travis really had a ball playing with all the kids and seeing all the Disney characters. We watched the Pats beat up on the Steelers while on board. Best of all, we missed the 3 ft. of snow here and the kids didn't miss out on any school as the whole week was called off. It was really a great time and good to see the kids having a ball after all they went through last year.

As for us....we're hanging in there as life approaches a new sense of normalcy. Our hearts are still so very heavy with sorrow as thoughts of Coley constantly run through our heads....day, night and in our sleep. Often life seems surreal....stopping a lot during the day to realize that our little girl is no longer with us. It's a sharp pain...but we have to try and fight through them as they come. Marissa and Travis still miss their sister a lot...and express their feelings as they come. We visit Nicole as often as we can together (which is still not easy). We continue to be a work in progress.

Thanks for checking in. Happy 2005. Go Pats.

Friday, December 24, 2004 11:25 PM CST

Wishing everyone very Merry Christmas and Happy New Year.

We continue to move through the Holiday season...our first without Coley. It has and continues to be mixture of happy and sad times. We hosted a Hanukkah celebration with my side of the family, which was filled with good food, presents and good times.

Tonight we spent Xmas eve, as always at Kristin's Aunt Liz' house which is always a good way to start the holiday gorging with all the food. Tomorrow we will head to Braintree to spend Xmas day with a lot of extended family. It is sure to be another bitter/sweet day. I'm sure Marissa & Travis will again be showered with presents.

Coley's headstone was placed on the 23rd. It is another step in the process of coming to grips with all that has happened in the last few months. We're working on it.

Oops, gotta go.....I think a sled just landed on the roof. Gotta go pretend I'm sleeping.

Wednesday, November 24, 2004 9:10 PM CST

Wishing you all a Happy Thanksgiving as we keep our Angel Coley in our thoughts...

Wednesday, October 27, 2004 8:28 AM CDT

Some have asked if we could share the Eulogy from yesterday's service. We could not think of a better journal entry for today, so here it is:

In her six short years, Coley became what every parent dreams of in countless ways, and yet in some ways she became what no child should ever be. She was an energetic little girl who enjoyed all of the precious gifts of life. Though short in stature, she was long in attitude and spunk. She had a doting older sister who patiently coddled and protected her--no matter how much Nicole battled her for the title of Sibling-in-Charge. She had a handsome baby brother who despite their two years difference in age, became like her twin as she deviously molded him to be her Partner-in-Crime. Her beautiful smile and cute little voice warmed the souls of all who came to know her. As a gymnast, soccer and T-ball player she danced and played aimlessly with a beautiful innocence. She jumped with reckless abandon on her trampoline, teaching the older kids how to do front-flips. Loved to sing and dance around the house and mimic Marissa as she practiced her cheers—often times knowing the moves better than her. Rooted for her beloved Red Sox and Patriots teams, especially Nomar, Jason and Adam Vennabeary. Coley was always at her happiest when playing in the yard with siblings and friends, riding her toy Harley Davidson, enjoying weekends in New Hampshire on the beach and in the boat. And above all, holidays and special occasions spent with her many cousins.

These are the images and memories that every parent cherishes as they watch their child grow. This is what every parent dreams of……what every parent expects.

Along with the joys of her childhood however, came the burden of her illness, becoming wise beyond her years and playing an inspirational role to us grown-ups. What no child should ever have to be.

Not only did she learn her ABCs – she learned how to operate her own feeding pump.
Not only did she learn to write – she learned that you flush with saline first, then heparin.
Not only did she learn that 2 2 = 4 – she learned that 38 degrees celcius means you have a fever.
Not only did she learn to ride a bike by herself – she learned to change bandages by herself.
Not only did she learn to sing – she learned that you can’t play too hard if your platelets are low.

Learning to play piano at the Ronald McDonald house was easier for her than eating a sandwich. Reading a 2nd grade book was easier than drinking a glass of juice.

Nicole, you were burdened with the Perfect Storm of medical misfortunes. Any adult, much less a child, would have been justified in wishing for the rough waters to mercifully and quickly take their toll. You however, smirked at the storm, reached for a surfboard and rode the wave of your life. Along the way, you taught so many people the truest meaning of courage, bravery, resilience, humility and indeed, life. Instead of being a little girl in search of heroes, you became one to so many.

In life, you were given a bucket of lemons, and with your spirit manufactured a lifetime supply of sweet lemonade for all of us who knew you to drink from each time we remember your smiling face and silly ways. Faced with living away from home for 9 months to fight your Leukemia, you took New York by storm. You turned the Ronald McDonald house into our own little play-land, making up silly games to make your chores fun. Central Park became your back yard with the ducks as your personal pets. At the hospital where weeks of continuous isolation in your room was no big deal, you once again stole the hearts of all the nurses, doctors and volunteers with your humor and commanding presence. In another example of role reversal, it seemed the volunteers came to see you so THEY could laugh and doctors and nurses visited more often than was required so that THEY could feel a little better about their day. In times when you and your sick body needed so much from them…..your spirit gave back so much more. How it use to make us smile when you woke in the morning at the hospital during your chemo treatments and we’d ask you “How are you feeling”…..and your response would be “Good….how are YOU doing?”. And when you’d report to clinic and the receptionist would ask “cough, fever or rash?”…and you’d say “Not today!”. Or when we’d cringe when telling you that the blood work today was going to be a finger-stick instead of drawing off your lines, you’d say “that’s OK, it’ll be over in a snap-and-a-clap”.

Rare is it in this world that those who would be students, become the teacher. Yet, for those of us privileged to have watched you gracefully navigate this life-long storm in person, and for those who followed you through your journals--we can not help but be better, stronger, more compassionate people as a result of your lessons. With your magnetic personality and courageous spirit, you became a child that bonded communities at home while creating another that literally stretched across the nation. Hundreds of people became “hooked on Coley” during your fight. Not because your journal was a good read. Rather it was because the girl behind the story was so wonderfully brave and inspirational. Safely we can say, that no child has touched the hearts of so many in such a short period of time as you did. We are ever so proud to proclaim you as OUR daughter.

In your time with us here on earth, you were deprived of much happiness that you so rightly deserved. It is hard for us to believe that there is a purpose for why God left you with us for so short a time and broke our hearts. But if we think—real hard—it is so clear that He had a lot of work to do quickly, and sent His strongest Angel. One so cute that we had to watch, one so loud that we had to listen and one so strong-willed that we couldn’t help but learn.

Grueling as it is to let you go, we are comforted that you are safe and at peace, and back by God’s side. There you are sure to serve as heaven’s nurse, firefighter and balloon-maker. More importantly, you will be free of the pain and suffering of the diseases that you fought so valiantly to beat.

So no more pokes, no more central lines, no more dressing changes, no more G-tube and no more medicines. You go have fun with the other kids now. Bounce on the clouds, swing on the stars and slide down the moon….. over and over again.

And we will know that you are watching over us always:
· When the wind blows against our faces, we will feel your kiss.
· When the sun shines upon us, we will feel your happiness.
· When the tree-tops sway, we will see you waving.
· When the stars twinkle above, we will see your smile.
· And when the Yankees trip and fall, we will see your outstretched foot.

To Marissa and Travis:
Mommy and Daddy are so proud of you for being such a strong brother and sister while Coley was sick. We know how hard it was for you to not have both of us there with you all the time. But we will work really hard to make it up to you. You have a special Angel now who will stop at nothing to make sure that you are always safe. Let’s have a new game of I-Spy, and see how many times we can point out things that lets us know that Coley’s still with us….like when we see a rainbow, grab a leaf from a pile to see that it’s all Orange or see Adam Vennabeary just barely squeak one through the uprights.

Coley, know always that Mommy and Daddy, Marissa and Travis, Papa and GG, Bubbie and Zadie and all your aunts, uncles and cousins will love you forever and ever.

Take care of Lamby.
Give Gramma a hug-and-a-kiss and please…..don’t be fresh with God.

Friday, October 22, 2004 4:46 AM EDT

Coley is finally at peace.

At approximately 2:05 AM this morning Nicole decided it was time to let go and join God in heaven. We checked her into Children's early last Friday morning and she waged a very hard battle. From the very moment we arrived last Friday, the medical staff felt that she might pass at any time. As always, Nicole continued to defy all practicality and press forward with her life, per her agenda, on her terms.

She made the most of her last week there. On Saturday and Sunday she played vigorously with her brother and sister, cousins and dearest friends. The energy she was able to muster to enjoy these moments was incredible, yet so typical for Nicole.

Since Monday however, she fell on hard times as her body began to fail. Her spirit never waivered. Even under heavy pain medication and sedation, she battled with her disease, the doctors, Yvette and us...letting everyone know what was OK and not OK in her very special way. She did however pass peacefully and without struggle. Thank you to Dr. Christy Duncan and the nurses at Children's for taking care to make sure that Coley was as comfortable as possible at all times.

Thank you to everyone for keeping Nicole and our family in your prayers over this past year. We would not have been able to make it this far without your support.

Special thanks to the BMT staff at MSKCC...you are all very special people and very dear to us.


Celebratory information is as follows:

Calling Hours will be held on Monday Oct. 25th from 4-8 at Farley Funeral Home, 358 Park Street, Stoughton, MA. Directions may be found at Farley Funeral Home

Funeral will be held Tuesday at 10:00, St. Ann's Church.. 660 N. Main Street, Raynham, MA.

WE REQUEST THAT IN LIEU OF FLOWERS, THAT ALL DONATIONS BE DIRECTED TO THE FANCONI ANEMIA RESEARCH FUND.

Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite 200
Eugene, OR 97401

Please write "In memory of Nicole Levine" in the memo of the check.

Monday, October 11, 2004 8:52 PM CDT

Day 68

Here we go again...

Into the Jimmy Fun today for what we knew would be a long day. Figured to get a red blood transfusion which takes a long time, and possibly platelets. Turned out to be more than that.

Started out as expected by getting red blood (thanks Uncle Mark for the good blood!). Her heart rate was fast before we started the infusion, so the docs called over to the cardiology service at Childrens to consult. They requested that she come over for a echo and EKG. So after blood, we went over and all was fine with the heart tests (hooray). Then we had to go back and finish up her platelet transfusion (they were only 11,000 today -- low!). Before starting those, they took her vitals and she was creeping up on her temperature. Within an hour she was over 100 degrees. Given her low counts and the fever, they decided to admit her for at least a couple days for blood cultures and other testing. We're a little worried that something's going on because since last nite she's been complaining of a headache. We expect a CAT scan tomorrow to take a peak.

Her blast count continues (as expected) to climb up....at 50 percent now. We were going to start up with another round of chemo today, but they decided to hold one day to see what happens with the cultures. If they start chemo and her ANC starts to move downward, she'll have an even tougher time fighting it. Meanwhile, she's on IV antibiotics. We really hope this is just some type of nominal infection that they can battle off with the antibiotics and the stay is short. But this IS Coley we're talking about.....so we'll wait and see.

To make matters worse, Mommy is at home under the weather as well. She'll need to stay away for a bit for Coley's sake, so Team Coley's without it's co-pilot for now (ofcourse Coley is the Pilot). We'll try and keep things on track without her.

It was good to see our old friend hunter and her Mom today at the Jimmy Fun....she looks really good.

Hope to update tomorrow...

Wednesday, October 6, 2004 5:08 PM CDT

Day 63

Huge thanks to everyone that walked for Light the Night on behalf of Nicole (see pictures). Thanks to Margaret for all her time and organization and Kim and Donna for helping her out. We had over 70 people on Coley's team and raised over $22,000 for Leukemia & Lymphoma. Thank you Yvette for coming in from NYC, it was great to have you and thanks to Aunt Kathy for coming down from Vermont.

Coley has had an up and down past week. She started her cycle at home of oral chemo (etoposide). The plan was originally on chemo for 10 days and off for 7. We finished her 10 days last Friday. Things looked like they were moving in the right direction last week with her blast count (bad cells) going down, as low as 2ut as expected her white count and ANC (ability to fight infection) also went down. She has been off chemo for 5 days and her blasts are now up to 20 percent and her other counts are not coming up.
This is not a good situation because we can't start her back on the chemo on Saturday as planned because her counts are too low, yet the leukemia is increasing.

The transfusions are starting again on a regular basis. Platelets aren't holding and she is getting transfused a couple times a week. With her counts so low we are very worried about infection and doing our best to keep fevers away to stay out of the hospital. Children's Hospital needs platelet donors if anyone is in town and has the time.
They didn't have any on Monday for her and we waited over 2 hours for them to come from the Brigham.

Nicole is still having a great time at home with her brother and sister. She loves doing her school work and going for walks outside. Her and Travis are inseparable and constantly getting in trouble with creative play. Her energy and spirits are still high.

We will be back at the Jimmy Fund Friday for blood and platelets. The docs will decide on Monday what to do about the chemo regimen. We pray the blasts don't take their typical upward trend quickly.

Monday, September 27, 2004 9:30 PM CDT

Day 54 (new pictures)

Coley continues to hang in there. She's been feeling a little cruddy lately with cold symptoms....a cough and runny nose. Not a big deal for us normal folk, but with her counts the way they are, it's a concern. Her counts are still shaky of late. Her white count is down to about 1500, with an ANC of about 700. Red count is hanging in there with a hemoglobin of around 10.7. Platelets are low too. She was at 47 on Friday and got a transfusion which bumped her up to 74. Today's count however, was back to 29 (normal is around 180). She got Respagam infusion today which took all day long. Also had a chest x-ray to make sure her lungs were clear. Good results there. We continue with the chemo at home. We'll finish up the first 10 day cycle on Friday, then take a week off. They'll see how she responded and make an evaluation on how to proceed from there. Still throwing up every morning.

The weekend was up and down. She had a great day on Saturday, but late that night she threw up and felt warm. We took her temp. and it showed 102. We called Children's and (of course) they said to come in. We got there around 12:30 in the morning where they took blood and urine cultures and a chest x-ray. It turned out that she had a urinary tract infection. We got IV antibiotics while there. The rest of her bloodwork looked OK, so we got to go home (around 4:00 AM!). So happy that we didn't have to stay overnight because we had big plans for Sunday.

We took Coley to the Red Sox/Yankees game (sorry doctors, had to do it). We surpised her by getting a limo to take her and Marissa into Fenway. We had great seats behind home plate and the girls had a great time. Thanks to our friend Ann back in NY, we got to meet pitching coach Dave Wallace at the clubhouse and get a glimpse of all the players getting ready for the game. Ofcourse, inspired by Coley's presence, the Sox went on to pound the Yanks! As a bonus, the Sox put up a "Welcome" message to Nicole on the Jumbo-screen.....pretty cool (thanks Sheil).

T-minus two days to Yvette's arrival to walk the Light the Night walk on Thursday night. Team Coley will stand out amongst the crowd thanks to the cool Orange jerseys we'll all be wearing. Should be a great night. Hoping to see a whole host of friends there.

Thursday, September 23, 2004 8:22 AM CDT

Day 50

Sorry for the late update. We've been having a good time acting like a 'normal' family with Coley back in the nest. The nice weather has served well to keep her active and happy. She began her schoolwork this week at home and is very eager and doing well with Mrs. Trucci. She gave her a hot-pink backpack which she loves. She even brought her homework to clinic yesterday to finish up. She had a special play-date with her best friend Taylor on Tuesday.

We've been watching her counts and they've slowly been trending down (platelets and red blood) but she was able to hold on until yesterday before needing a transfusion of RBCs. It had been a long time (for her) since needing any blood products. We knew it was going to be time however, as we could see her growing a little more pale and tiring easier. She will get platelets on Friday as well. Monday will be the IVIG infusion which will take all day long (yuk).

Yesterday's visit to the clinic was not a good one. Her blood work showed for the first time that she has blast cells in the peripheral blood....spilling over from the marrow. It's showing around 8for you folks in NY checking in). Not unexpected, but disappointing nonetheless. Given those results, we started with the first oral chemo. drug last nite at home. An odd, scary and ominous feeling pushing the drug through her G-tube. It's the start of a new phase of treatment....one that has no guarantees of effectivity, side effects, etc. It's a very low dose to start so we'll see how she tolerates it. Best case is that we start to see a decrease, or at least no growth in the blast count for as long as possible. Worst case is that she blows right through the treatment without effect. It's likely that it will cause her WBC and ANC (infection fighting cells) counts to drop, making her more susceptible to infection...so we'll have to keep a close eye on her. She'll also be going into the Jimmy Fun three days a week.

She's been vomiting most every morning. Not really sure if it's her meds. or the after effects of transplant. She is such a trooper though....does her business and moves onto the next thing in her day. This morning around 5:00, we heard her rustling in bed and rushed in to see her calmly sitting up in bed with basin in hand throwing up...like she didn't want to bother anyone.

We're looking forward to the Light the Night walk in Boston. Hope it's a nice night weather-wise. Yvette is coming in to town to visit for a couple of days and walk with us. Coley's counting down the days. We've got her set up to sleep next to Travis in the trundle-bed (he, he)....just kidding Yvette!

Tuesday, September 14, 2004 9:01 PM CDT

Day + 41

Still doing OK back at home base. Coley had her first visit back to the Jimmy Fun on Monday. We started at Children's Hospital in the morning and had a cardiology workup....echo and EKG and then met with Dr. Lacro (Coley and Marissa's cardiologist). Her studies looked very good.."normal" according to the doc. So that was a good start to the day. Next we made our way over to the Dana Farber to meet with the Oncology team. We saw our good friend and first doctor to see Coley way back in December....Dr. Duncan. We got caught up on everything that's gone on over the last couple of weeks and went over the plan that was discussed with Dr. Boulad.

We also saw Dr. Guinan who is the transplant director at the Dana and reviewed everything with her including what dose of chemo we'd start Nicole at when we begin treatment. Coley's counts still look OK and there are no blast cells circulating in her peripheral blood yet....so no transfusions required and no chemo. She'll go back into Boston on Friday for an update on counts and then hopefully go to a weekly Wednesday routine.

Otherwise, Coley's doing pretty well. She's pretty energenic and very happy to be home interacting with Marissa and Travis. She really has jumped right into her old routine. She got to see her classroom on Friday when the students were out at recess. She won't be in there, but she will get individual tutoring from Mrs. Trucci!!! She's very excited!! She spent the weekend playing outdoors, in the playhouse and going to Marissa's soccer and football cheering games. Good to be back in a normal (hectic) routine. Beats the commuting back and forth to NY....though we do miss the folks back there.

Friday, September 10, 2004 9:21 PM CDT

Day + 37

Well we made it home. We left a day earlier than we originally thought. Nicole didn't need radiation treatment for her eye today, so we took off for home last night and arrived around 9:30...in time to catch most of the Patriots game. Coley was very excited to get home and see her brother and sister (both sleeping by the way). There were some sad faces in NY when we left, including ours. So many caring, dedicated and talented people at MSKCC that really treated her so well....making it very hard to leave with such an uncertain future.

We met with Dr. Boulad again before we left and talked about the two options we have at this point. One is to try a chemotherapy drug (VP-16) to keep the disease at bay for as long as possible. If her body cooperates and she doesn't develop serious complications--unknown on the probabilities of either occuring--then we could consider at some point trying additional drugs/treatment. The other option is "do nothing". According to both NY and Boston, either choice at this time is reasonable and justifiable...so it becomes a personal decision that we are comfortable left. We told them that we want to continue on the chemo plan. We should be able to administer it at home orally-- so long as Coley tolerates it well and doesn't develop complications.

We'll meet with Boston on Monday to go over everything and look forward to seeing some of our old friends there. In the mean time, Coley feels pretty good and is her old self! She finally got to go inside her new playhouse which she absolutely loved. It sure is nice to be home again as a family...which we haven't done since January with the exception of a couple scattered weekends in the early summer.

Monday, September 6, 2004 9:25 AM CDT

Day 33 (New pictures from the weekend)

It's Labor Day and we've all had an awesome time together in the city. The kids have really enjoyed playing together once again after not seeing each other for the past two months. They haven't missed a beat. We walked, shopped, went to the zoo, dined out and went on a carriage ride thru central park. That's been the really good part of the weekend. One that did not have a very good start to it at all....

We were informed on Friday that Nicole's leukemia is back already. Unlike last transplant, where she was cancer free for 4 months, this time it only took 30 days to reappear. We became worried on Wednesday when her eye began closing a little just like last time when there was a solid tumor there. They scheduled a CAT scan for Friday morning prior to her bone marrow aspiration. That's when the bad news began to flow. The scan showed that it was indeed a tumor in the eye socket. That really made us worry about what was next to come in the bone marrow biopsy. While we waited for those results, we had to go downstairs to have her eye radiated, because they didn't want to wait over the long weekend to address it in fear that it would get too far away. Ofcourse she did very well in going through the radiation....very cooperative, happy and goofy. She'll have a couple more sessions like this tomorrow and Wednesday at least.

When we got back upstairs, Dr. Boulad called for the marrow results. He came back to inform us that indeed there were blast cells in the marrow (about 10t this point). Needless to say, we were (are) devistated. There will be no third try at this from a transplant perspective, and it seems that there are no curative possibilities left. After a long discussion we discussed preliminary options which ranged from no treatment whatsoever to chemotherapy to antibody therapy. Any therapy it seems would be a method to prolong as much as possible the advancement of disease.....but not seen as a cure. How long it could prolong is unknown.

We need to re-address the options again this week because we obviously were not in a state of mind to comprehend everything rationally, much less make a decision.

It does seem likely that we will be heading back to Boston soon, because there's really nothing special that Childrens Hospital couldn't also handle at this point....and we want her home with us if at all possible.

Thank you for your support and prayers, we only hope that they still may answered for a miracle.

Yvette (Nicole's nurse), thank you for spending time with us on your weekend off. We enjoyed your company and we know the kids did too.

Tuesday, August 31, 2004 2:37 PM CDT

Day + 27

Again, just a quick update to pass on good news. Nicole was scheduled to be discharged today but Dr. Boulad actually cut her loose last night around 8:00 after she finished getting her IV meds. Yesterday was her first day in a very long time that she hasn't been tethered to a massive IV pole. She was sooo excited to be free from the spaghetti mess of all her lines. She kept walking around the room saying, "Dad, check out how fast I can walk around the room now....watch!". Anytime someone would walk into the room she'd say, "Notice anything different about me?".

Everything looks pretty good right now on her counts and electrolytes, etc. She doesn't have to continue her TPN nutrition any longer....so long as she can continue tolerating her G-tube feeds. She was so excited to be back at 'Ronald'. Her nurse Yvette helped walk her home with Mommy and Papa. I talked to her today as she was walking along the pond at "Central" -- didn't take her long to get back in the groove. After 54 days of being cooped up in isolation...not being able to even leave your room, who wouldn't be excited?

Marissa, Travis and I will drive back down to NYC together on Thursday nite to spend the long weekend together. Maybe I'll stop at Madison Square Garden and slip Travis on stage with George Bush. He'd be right at home just smiling and waving.

All the kids are pumped for the trip. Nicole will have her 30 bone marrow aspiration on Friday (praying for good results), but other than that we should be free to have a good time together finally.

Friday, August 27, 2004 7:55 PM CDT

Day + 23

Just a quick update for tonite. Nicole had a very good day, she was up a lot during the day playing and in very good spirits. She watched Freaky Friday in bed and when the closing song came on where the credits roll, she said "Dad, I want to get out of bed and "shake it up" to this song.....they really rock on this one!". She did a mean air-guitar and the booty was a-shakin'.

Here's the good news....Dr. Boulad came in today and said that the plan is for Nicole to be discharged on Tuesday....hooray. It's been a long haul in the hospital this time around. Hard to believe she's been admitted since July 9th.

Kristin went home this morning with Papa. They're having a farewell dinner with her brother Matt, sister-in law Kathy and their kids Kayla and Matty--who take off for home tomorrow. We can't thank them enough for picking up and staying at our house over this past month from Virginia. It has truly been wonderful for Marissa and Travis to have them around and provide a sense of stability over this summer. Thanks guys!!

Zadie comes in tomorrow for the weekend.....new batteries installed in Attack-Uno and ready for action.

Wednesday, August 25, 2004 9:20 PM CDT

Day 21

*** Special Notice***

Our friend Margaret Regan informed us of the Leukemia and Lymphoma Society's "Light the Night" fundraising event on September 30th. It's a walk with illuminated balloons beginning at the Boston Common. Anyone is welcome to walk individually, however in honor of Nicole a "Team Coley" has been established whereas any pledges raised will be donated as part of that "Team". You can learn more about the walk at www.lightthenight.org. Once there, to register under Team Coley select Sept. 30 walk and register under her team and pledge forms will be mailed. Also, if you can't walk but would like to donate online under her team name, go to www.active.com/donate/ltnbcom/ltnMRegan.


For any additional information, please feel free to contact Margaret at mcregan@verizon.net. I will post more details as they become available.

______________________________________________________
Coley continues to do better than expected. The echo on her heart came back and it appears that it is very much normal again. Expect that sometime soon they will take away the Digoxan (heart) medication. Liver continues to decrease in size -- that's good. Her counts look good too. She didn't vomit all day today and the diarrhea is decreasing even though she has finally begun her G-tube feeds.

Today, for the first time in AGES she actually told Kristin that she felt hungry! Kristin asked her what she felt like eating and she said "a steak"!....they negotiated to a more reasonable starting point--soup.

Her nurse Yvette came in yesterday--on her day off--just to play with Nicole for a few hours, that was so nice. She bought more dolls for them that actually came already named Yvette and Nicole. Coley said that they even looked like them. She started doing some homework today to get ramped up for school.....Mom's already crackin' the whip! She continues to be more interactive and upbeat, like the old Coley.

Thursday, August 19, 2004 11:19 PM CDT

Day + 15

Odd day today....another turn in the rollercoaster. Coley was once again very tired and sleeping late. Around 10:00 Kristin went to wake her up....but couldn't!! She yelled to her and everything but she wouldn't open her eyes. Ofcourse she panicked and ran for her nurse who called for the transplant team STAT. After a few more moments they got her to lazily sit up and her eyelids were flickering. They said it was a siezure.

Not sure exactly what caused it, but they stopped one of the meds (tacrolimus) that is known to sometimes have that effect. She had a CAT scan that came back clean, a consult with neurology and a EEG (results pending). She was tired the balance of the day. Good news is that when I talked to Kristin around 9:00 Nicole was up and sounded VERY good (perky). She was watching gymnastics...she loves the girls. Heard Kristin say, look Coley it's Courney Kupets (ph: KOOpets), she said "no, it's Courtney Kupets (ph: kuPETS).....now that's our Coley.

Hope to learn more about this episode and hope it NEVER happens again. Dr. Boulad stopped in after his 2 week vacation and told Kristin that he was jumping for joy when he heard the 100 percent donor cells results. He apologized for missing out on all the action we've been reporting here over the last 2 weeks. I'm thinking of docking his pay.

And onward we go....

Wednesday, August 18, 2004 4:57 PM CDT

Day 14

News flash, Thurs. AM: Coley's blood test results to determine Donor/Host relationship that I mention below came back last nite. She has 100 percent donor cells in the blood stream! Now we pray that it will be the same in the marrow in a couple of weeks.
________________________________________

A quick update. Nicole is progressing pretty well at this point. "As good as we could hope" according to the staff. Her WBC continues to climb upward...it's beyond the normal range now, but as they cut back on her GCSF we should see it settle down into normal range. She's holding her platelet count now (though still way below normal range) and we hope to see it go on the rise soon. Also holding her hemoglobin count which is good.

A little concern on her liver and spleen which are both large. The big worry is for veno-occlusive disease (VOD) of the liver. She got an ultrasound yesterday and the report is that they are indeed enlarged, but no evidence of VOD at this time (good news). They will continue to watch them closely. The cardiologist performed an echo of her heart on Monday, which looked very good. The heart function is again in normal range. Her BP seems to go up at nite which they are looking into and may just become an adjustment to her heart medications to make them more longer lasting thru the day. Also had a chest x-ray yesterday that showed pretty much unchanged from previous with a little bit of fluid still lagging, but no worse. Hopefully it will get better with time as well.

They drew blood to test the Donor/Host relationship in her blood stream. The results are pending now, but we are hoping it comes back as 100 percent donor like last time. If so, we'd hope to see the same results deep in her marrow when they test it in another couple weeks thru biopsy.

She's still very weary and not nearly back to herself. Weird to think that we got discharged on day 15 last transplant (which would be tomorrow). She's not nearly ready to go home yet. This one hit her much harder on a lot of fronts.

Another fundraiser was put on by our friends from the South Shore Hospital in Weymouth where GG is a nurse. Kristin attended with the kids and as expected, it turned out to be a great success once again. Our heartfelt thanks to all of those who attended and planned this great event! We are blessed to have so many people who care for Nicole.

Sunday, August 15, 2004 9:47 PM CDT

Day + 11

Another good day for Coley today....though she sure is wiped out these days. She slept until around 10:15 this morning, then went down for a nap from 3:30 to 7:00 tonite. Dr. Kernan mentioned that its expected to be this wiped out...as they "hit her a little harder" this time around. When she was up in between she made these cool slippers with Auntie Donna that the playroom people dropped by. Her WBC is up again....as of this evening it was 2700. Her hemoglobin is 9.7 and platelets are 29K, so waiting to see if she'll get anything later tonite or tomorrow morning.

Uncle Mark and I both gave platelets today for Coley, so she should be able to receive them in a few days, once they clear the blood bank screening.

So that's about it for today....a fairly boring (aka good) day.

*** another sidenote to tonite's entry, and unfortunately a very sad one. Please send your prayers of strength for our friends on the floor here, Scott and Donna Reents and their family who sadly lost their son Forest (www.caringbridge.org/ky/forest) in the early hours this morning after his very long and brave battle. Their horrible loss is a harsh and somber reminder of the fragility and serious nature of the illnesses of these children. ***

Saturday, August 14, 2004 9:51 PM CDT

Day + 10

Things went pretty well today for Coley. She did not have any fevers all day, had one small vomit and most importantly started to have her counts come in. This morning her WBC was 0.6, hemoglobin at 9.9 and platelets were 29. Dr. Kernan mentioned that the composition of her white cells looked very good as well. We weren't sure if she was going to need a blood transfusion later in the day, but when the evening labs came back, the counts actually got BETTER! Her hemoglobin went UP to 10.8 (no blood required) and her WBC went up to 0.9. Platelets did drop so she got them tonight.

Her hair is really clumping out now. She's donning the bandanas again to help with all the itching. She's still very tired! She didn't wake up today until about 10:30 and took a 3 hr. nap around 3:00. She only has a few hrs a day of being "herself" where she's talkative and perky. Does not have any desire to get up out of bed and walk around....unlike last transplant. We'll get there I guess.

Mom went home this weekend to see Marissa and Travis. Marissa is starting to really miss us, so it's good that she'll get to see Kristin. Travis on the other hand....is just having a ball no matter what. Uncle Mark and Auntie Donna swung into town to pick up some of the slack for the weekend. Mark will also donate platelets on Sunday. I hope to too....I've been rejected twice since I donated stem cells because my platelet count has been too low. Hope tomorrow will be the day.

Hoping for even better counts tomorrow.

*** special thoughts go out to Coley's friend Fatma who is now on the floor undergoing her transplant. She had her total body irradiation yesterday, with chemo starting today. I'm sure she's feeling pretty yucky too now.***

Friday, August 13, 2004 7:48 PM CDT

Day +9

Nicole has had a better two days than any in the past two weeks. Vomitting is less,diarrhea much less and fevers are lower and less frequent. Heart function is still about the same.

At night Nicole has been needing oxygen while sleeping with the blow by tube. She had the nasal oxygen when she was in the observation unit and was not very cooperative with it. She is on a little bit of morphine for her couple of mouth soares and soares on her butt. None of which she had last transplant. Maybe this is a good thing...getting the full chemo side effects.

Tonight she actually has 500 white cells. She is still eating through platelets (4 bags yesterday). Her hair is falling out again. She showed us a big clump and we asked if she was upset. She just said, "No it will grow back." The arts and crafts have started again, no Annie or Sound of Music.

Wednesday, August 11, 2004 9:11 PM CDT

Day + 7

A little better day than yesterday. We didn't have any extremely high episodes of fever....though we did have fevers. Not sure however that it wasn't because she was well covered with Tylenol most of the day because of all the blood products she received today. She got platelets, which only bumped her count from 16 to 17. Then she got red blood to raise her hemoglobin count. For each of these, she gets Tylenol as a premedication....which of course helps surpress fever. It's 10:30 now, and it looks like sometime tonight/early this morning she'll get at least blood and maybe even platelets again.

.....So if you happen to be in the city and you want to direct donate some platelets (or red blood if you're A+), to Coley, feel free....

She also got GCSF today to try and kickstart her WBC, just like last time around. Hopefully in the next couple of days we start to see the results. We obviously want her to get those counts in so that she becomes less dependent on all these antibiotics she's on and blood product transfusions. When the counts come in, she'll start producing platelets, red blood on her own and the white cells will help with the infection fighting. Hopefully, the fevers will also go bye-bye.

As always....hoping tomorrow is better than today.

Tuesday, August 10, 2004 8:30 PM CDT

Day +6

Nicole started off with a great day. Low heart rate (85-110), one low grade fever. Then we did the daily bath, skin treatment to protect it from the chemo, bed change, etc. After all that activity Nicole went back to bed for awhile then did arts and crafts with a nice volunteer, Kristen (another sox fan).

At 4pm she said she was tired and wanted to take a nap. Her nurse came in to hang some meds and we looked over at her monitor and saw her heart rate up to 160 and her sats dropped a little. We took her temp (104)and put an oxygen blow tube near her face. With the help of tylenol and viox she was better 4 hours later. Blood cultures are still being taken daily to see if the culprit can be found for the high fevers. Of course, we were worried about her heart again. All of her vital signs are back to normal now and we pray for a good stable night.

Her white count was zero today. She will start GCFS tomorrow to help her white count come in which should also help with whatever is causing the fevers. GCFS is the same medication Todd got prior to harvesting his stem cells to increase the volume.

Day by day.

Monday, August 9, 2004 7:14 PM CDT

Day +5

Finally, good news to report...we were moved yesterday afternoon from the observation unit to her old room (lucky 901). Yesterday mornings EKG and chest X-ray came back with no change from prior days. The doctors started her on viox to try and keep the fevers down which seems to be working. She is now getting only a couple fevers a day that are lower than before. Once they told us she was stable, we packed up and moved on over to our "big room" thanks to some covert maneuvers by Yvette.

Today she had another echocardiogram and we received amazing news that Nicole's heart has improved back to normal functions (or functioning as it was prior to the failure she had last Monday). The team is still trying to figure out if she has some type of infection, virus or just fevers from all the stresses to her body.

We hope the worst is behind us. We have a few more weeks until we are out of the critical period of organ problems with the liver and kidneys. So far everything looks good. She still has a little congestion in her lungs but it is not getting any worse. If we can get her up a couple times a day we try to practice blowing bubbles or windmills. Not always cooperative.

She does have 100 white cells. Not sure yet whether that's a phantom count or not......but if it's real, they better be Todd's.

Sunday, August 8, 2004 8:41 AM CDT

Day +4 (Reporting on Day +3)

Another stressful day yesterday and still in the observation unit. Nicole had constant high fevers up to 104 requiring tylenol every 4 hours and never broke a sweat. In the late afternoon we asked if Nicole could get viox (similar to alieve with no bleeding factors). We also were concerned with her high heart rate which comes with the high fevers. Her rate was constantly running 150-180 and should be in the 90s. We just wanted her body to have a break and try to get her heart rate down. The viox kicked in at about 6pm and she did well throughout the night. One low fever and her heart rate stayed around 110.

She woke up this morning with another high fever. We will see what the day brings. We are planning to move back to our old room on the regular floor today. First, she needs a chest X-ray and EKG. If those look good she is considered stable enough to move.

Friday, August 6, 2004 7:36 PM CDT

Day +2

Not much has changed from yesterday. Coley is sleeping throughout the day and still running fevers. Her heart continues to do better. She can go back to the regular floor tomorrow but will still be on the heart monitor. Her heart rate is still a bit elevated probably due to her fevers, low counts and the cardiac problems she endured.

Doctors tell us this is what typical transplant patients go through with the fevers and lethargy. Her first one was a breeze and not very typical at all.

We will write tomorrow hopefully, from her favorite room and back with her favorite nurse.

Thursday, August 5, 2004 9:13 PM CDT

Day + 1

First day post-transplant and things are looking pretty good right now. Coley was pretty tired most the day. She was still getting fevers, but they were lower than the last couple of days and easier to manage with Tylenol. Her rash, which was horrible yesterday, looks better today. Most importantly, she had another echo today and the Cardiologist said that her function is improving still and moving toward normal range. She was able to go all day without the help of oxygen. As a result, they stopped one of the heart meds (Dobutamine) and switched her over to Digoxyn, which she can take for a longer term. She's not out of the woods on this front, and will need this drug for a while, but it's definately moving in the right direction.

Her heart rate was also down for the great majority of the day....exept when she had a fever. Two days ago it was up to 180 bpm versus today being around 120.

She got a new American Girl Doll outfit today from her nurse Yvette (who is very mad that she's not on the regular floor which means she can't be her nurse). Yvette even got herself a Doll and matching soccer outfit for her.

Coley was much more vibrant beginning around 6:00. Her personality came back a bit and we had fun watching E.T. Right after the movie she pooped out and went off to sleep. Hoping for even more improvement tomorrow. In so many ways, the hard part is really just beginning.

Wednesday, August 4, 2004 6:17 PM CDT

Day 0! (1 new picture of the transplant)

We are so thankful Nicole made it second transplant day! Transplant officially took place at 12:20pm. It has been a rough month getting her to this day.

Today was a better day for her. She was more alert, up playing in bed, talking more and made some more party hats for her transplant. She enjoyed a quick visit from GG and Papa.

She is still getting high fevers and has a bad rash that could be from numerous things - infection, antibiotics, etc. Her heart is not as enlarged and seems to be functioning a little better today. She changed from a cardiac drip to an oral med. We hope she will recover and reverse her problems over the next week. She is still in an observation unit and getting one on one nursing. One of her primaries from the regular floor came over to be her nurse last night. It was a nice surprise.

We hope today is the beginning of new healthy life for her.

Thank you for your thoughts and prayers! Keep 'em coming.

Tuesday, August 3, 2004 10:15 PM CDT

Day -1

We are a 'Go' for transplant tomorrow.

Coley had an extremely restful day today. She slept through the the majority of the day and early evening...even though she was fevery for most of the day. We just treated her with Tylenol and a bunch of cold compresses. She's so wiped that she even slept through most of her testing this morning. One-by-one they came to check out her heart and lungs. Ironically for a hospital, everything went like clockwork....first chest X-ray, then Echo, then EKG. The good news is that the x-ray looked much better than yesterday from a lung congestion standpoint and her heart function, though still below normal ranges is improving in the right direction. Most of her blood labs look good. She needed platelets today and will receive blood tonite (early AM) as well.

The big battle today again has been fevers. She was only normal for very short periods today. The rest of the day and evening she was either mildly feverish (100) to very hot (104!). We had the cold-compress-express going rotating them on her head, armpit, body to get it to come down.

When she had her brief stint of normal temps, she found time to make her Transplant Party hats. This time around, the theme is "Lambs" (what else?)....creatively crafted with construction paper and photos of lambs, provided by the play room volunteers. We'll try and give you a glimpse of the big event tomorrow nite.

Monday, August 2, 2004 9:45 PM CDT

Day -2 .... couple of recent pictures.

Looks like transplant day will be on Wednesday (we hope).

Not a very good day at all today for poor Coley. Started off OK, with a fairly good nite's sleep, but quickly went down hill from there. Her heart function fell off today as her O2 saturation fell down to 90 percent. She needed oxygen to maintain a good level. They called for an echocardiogram in her room which showed an enlarged ventricle. Basically, her heart rate is very high, because her heart is not contracting well enough to pump through all the volume she needs to. She also has increased congestion around her lungs. They are trying to aggressivley get the fluid out of her bloodstream with lasix in hopes that will ease up the demands on her heart. In addition, they have started a new medication to help her heart contract more and move the volume through. We're not sure exactly what's causing this. The chemo drug normally associated with this type of problem she is not receiving. Perhaps a virus....we just don't know.

Because of her condition, we have moved to the Pediatric Observation Unit here on the floor for some intense nursing. They don't have a pediatric ICU here at Sloan, so if things get any worse, we may have to move across the street to Cornell Hosp. to their PICU. We really don't want that. They believe they've caught this early enough that it will be reversible with the meds. Still very scary.

As of right now, they are not planning to postpone the transplant past Wednesdsy morning. I did my stem cell donation this morning and they said that I won't have to be harvested again tomorrow because the projection from the lab is that they will have plenty of cells once the processing is complete.

If it's not one thing, it's another...it just keeps getting more complex and scary with each new development. We really need her luck to turn so we can try and start to plow through this transplant.

Monday, August 2, 2004 8:19 AM CDT

Day -1 (maybe)

Nicole finally slept well last night. She fell asleep at 10:30 and is still sleeping at 9:30. She did have a couple of high fevers yesterday (103). We had to wake her at 2am when she had a fever, labored breathing and her oxygen level dropped. She is on oxygen now and sleeping comfortably.

Yesterday doctors were concerned with her liver functions. It seems a bit enlarged, she is retaining a little fluid and it took a long time for her system to get rid of the dilantan. Her levels came back normal today but they are watching her closely. The last thing we need is liver disease.

The dilantan level is finally low and she is very excited she can see normally.

Todd is at the donor room for his stem cell harvest. Pray for adequate volume. We still don't know if the transplant is tomorrow or Wednesday. Last day of chemo is today and we just got word she went to 0 for her White Blood count. This means the chemo has killed off the cells (hopefully every last leukemic cell).

We will keep you posted.

We will be

Saturday, July 31, 2004 9:09 PM CDT

Day -3

Today was a very rough day for Nicole. She was very much "out of it" all day long. We think it is a combination of a few things: first, the Dilantin affect is still very much in her. Even though her levels are coming down finally, it was explained that the symptoms of the toxicity can linger for a couple/three days after. She is still saying (when she does speak) that things look "icy" or white. Second, she's so sleep deprived over the last three nites that she's got to be out of sorts from it. Third, her white count is starting to bottom out at 0.1, which always makes you feel just plain awful.

It's midnite now, and it wasn't until about an hour and a half ago that she started to show some life. Rather than just laying there with her head in the same position for hours, she actually responded to different voices in the room and moved her head side to side. Started speaking a little as well. Small things, but it made us feel better that she's starting to shake the whole Dilantin thing finally. I think her mind was so screwed up that she didn't want to move her head an inch for fear of what it make her feel like. Sort of like being on a dizzying amusement ride and not wanting to open your eyes.

In a weird way, we hope that the primary reason for her feeling so horrible is that the counts are so low and the chemo effects. Hopefully, what we are witnessing now with her is a more typical transplant process where the patient becomes very sick from bottoming out. Flying through a transplant (like last time) though easier to take on everyone's part, does not always translate into effective results.

Because she was so sick, shaky, dillusional, and fluid overloaded, they decided to give her a day break in her chemo, so nothing today and we'll pick back up with it tomorrow.

We're back in our old room 901. Nice and spacious and maybe that will help her feel better too. We've got good kharma here. Looking for every edge in our favor....and that tomorrow is better than today.

Saturday, July 31, 2004 7:44 AM CDT

Day -4

We were definately on the loop of the rooler coaster ride yesterday and the past two nights. Coley did not sleep at all the night before last and was hallucinating. This was still the results of a high dilantan level in her system. Her vomiting is much more frequent and is now all blood probably as a result of the chemo side effects, mucousitis.

Yesterdays trip to the procedure room to have an additional line placed turned out to be a disaster. This had to be done in case they need more access for infusing meds. She needed platelets and fresh plasma prior to the procedure to reduce bleeding and help with clotting. She had to be intubated because of the vomiting. When the doctors told her to lay down to start, she told everyone in the procedure room she didn't won't to do it and was really nervous. She had never said this prior to a procedure. We should have listened to her.

On our way back to her room after a brief recovery period we noticed a lot of bleeding near the site. Todd went and got our nurse practitioner and a very special doctor, "Dr. Katy." About 2 doctors, nurse practioners, several nurses, including her fav nurse Yvette took great care of her.... controlled the bleeding gave her more blood products. It was scary for her and painful (a lot of pressing and ripping off of the bandage). She became overloaded with fluids due to all the blood products and now her breathing is very labored and her oxygen level is lower than we would like. She is getting lasix to reduce the fluid but we are still not at a great level of fluid output.

We are praying none of this takes a toll on her organs. She is finally at a normal level for the dilantan. The fidgeting stopped and she is able to speak much better. She's still in a lot of pain in the shoulder and tummy from the new line and new G-tube. Last night she went into full detail about her hallucinations with Yvette and Dr. Katy. She thought she was sleeping in an orphanage and the walls and her white sheets were all ice. "Lamby was black, cold and very sick." It was awful hearing her stories from the bad night before and she said she couldn't tell us because she couldn't talk right. Yvette felt so bad that this morning she made a special trip in to the hospital and brought her in a couple pairs of new pink sheets for her bed. Good news though, we just made a bid for her old room (the biggest one on the floor) and it looks like we might move in there sometime today. She was so happy to hear that, because she said "I don't like this room, it scares me sometimes.....I like to color in that other room".

Two more days of chemo then we hope the worst is behind us. Although, the effects can linger for a couple of weeks.
We appreciate your thoughts, prayers and kind messages.

Kristin, Todd and Coley

Thursday, July 29, 2004 7:46 PM CDT

Day - 5

A short update today, because there is not much to report on. Disappointed in her overall condition today mostly because the effects of her Dilantin load are still very much with her. Another full day of 'shakyness' and lethargy. Coley had trouble again today maintaining her focus and being able to finish a thought. She doesn't like doing fun things like arts or painting/drawing right now because it is so frustrating for her. She goes to pick up her paint brush and she either misses it or it shakes out of her hand. We can't wait for this to pass. Pharmacy said it could be up to 48 hrs to get her back to normal. We just want to chalk this thing up to the high Dilantin level and move on. Until the effects go away we are skeptical that it's all the Dilantin (despite everyone saying that it is).

She didn't have her surgery for the additional line change and G-tube replacement because surgery was so backed up with emergency procedures. The floor here is completely full with a tremendous amount of transplant patients. So we're on for tomorrow afternoon.

Day 1 of Fludarabine went off fine. She was vomiting off and on, but no more than the previous few days. WBC is coming down as expected. Platelets are not holding at all. She'll get two infusions today and probably another one dripping in during surgery tomorrow. Given where her hemoglobin was today, I'd expect a red blood transfusion either tomorrow or Saturday.

Wednesday, July 28, 2004 7:17 PM CDT

Day -6

Today was a very weird day. Nicole was up until about 11:15 last night being kinda fidgety (we now know why), and slept until around 10:00. She started out the day very lethargic and feeling "yucky" as she says. We finally got her up and into the tub and changed her line dressing...settling back into bed around 11:30. She had her bouts with naseau throughout the day. Because she hasn't had anything in her gut in about a week now, when she vomits it puts a real strain on her just to get up some bile. Today she had some blood in her vomit as a result of all the acid flow. Scary because her platelets were very low today as well as her coagulant factors, so she received a platelet transfusion as well as fresh plasma.

During the afternoon is when things got weird. It turns out that the levels of the Dilantin drug that she's getting to prevent siezures was very high. As a result, she was EXTREMELY hyperactive all day, in a scary way. Her hands were very shaky and she could not stop using them....had to fidget with something constantly! It was truly exhausting just watching her. We felt like we were watching a movie with another kid in it. Kind of like a toddler version combination of "Rainman", "Edward Scissorshands" and "Forrest Gump". Her hands and eyes were so active that it was freaky. Worst part is that the medication has a very long half-life, so it is taking 8-12 hours to make its way out of her system. Her balance was also affected such that just sitting in her bed, her head would tip left and right without control. It was frustrating for her to be like this all day....and nite.

The good news is that this is the last day of Busulfan, the first of the two chemo drugs she'll receive. Tomorrow will the first of four days of Fludarabine, then a day of rest...then transplant. Counts are going in the right direction (except for platelets for which she is being transfused every day now).

Tomorrow is a big day for Coley. To be sure they have enough access for IV antibiotics, blood products, chemo, etc. they'll be putting in a second line in the other side of her chest. All together she'll have four access ports after tomorrow. They'll also replace her G-Tube with a larger one because it's starting to rattle around too much and cause a lot of irritation. I'll also start my GCSF shots tomorrow through Monday. Only once a day this time around.

That's all from here...

Tuesday, July 27, 2004 6:51 PM CDT

Day -7

Nicole started the day off throwing up at 5am, back to bed until 9 then throwing again. The team decided to try a quarter dose of adivan. She didn't get sick but again was out of it. It was bad timing because Kathy, Kayla and Matty (Kristin's sister-in-law, and two kids) stopped in to see Nicole on their way to our house from Virginia. She was happy to see them and Papa but a little loopy. Kathy and Matt will be watching Marissa and Travis for the month of August. Papa drove me to NYC yesterday then continued to Virginia. Stayed at their house for the night and drove them back today. We are so thankful to have them for the month and Travis and Marissa are very excited.

Nicole's day got much better when they gave her morphine and stopped the adivan. She has been fever free for 2 days and what a trooper through the second day of chemo.

She finger painted a beautiful canvas piece of art. Covered her bed and most of her body as well.

Tomorrow is the last day of busulfan then Thursday we start the second chemo drug. Her counts are dropping - hoping for zero by transplant day.

Marissa, Danielle and Katy - I hear congratulations on your money raised for cancer. You girls worked hard selling lemonade and at your manicure table! You were the talk of the neighborhood!

We will check in tomorrow.
Kristin, Todd and Nicole

Monday, July 26, 2004 8:07 PM CDT

Day -8

Nicole started her first day of transplant prep. Her first high doses of chemo started, 4 times a day of Busulfan. This will continue through Wednesday then she starts another chemo, fludarabine. She has been nauseous from the pre-med that prevents seizures but she has not had any fevers.

Todd starts his shots on Thursday to increase is cells for the stem cell harvest next Tuesday. Transplant should be a week from Wednesday.

Nicole's nausea meds aren't holding her too long. Today we tried a low dose of adivan to stop her from getting sick. She was so "loopy"...never fell asleep and kept saying,"I see two Mommies." She couldn't complete a sentence or stand up. We won't be trying that again.

Good new today,results from her bone marrow aspiration last Friday showed 25% donor cells (Todd's). We were surprised she had that much of his cells still because the leukemia was so high in her blood. Could have been worse.

We will give an update tomorrow.

Thanks for all your thoughts and prayers.
Kristin, Todd and Nicole

Saturday, July 24, 2004 8:27 PM CDT

Day + 164

Well we have a plan. August 3 is now the target Day 0, or transplant day. Backing off that date, Coley will have 7 days of chemo plus a day or so for rest just prior to the transplant. Tomorrow she'll start Dilantin, which is a medication to help prevent siezures, which one of her chemo drugs (Busulfan) can cause. So it's two days of that drug to get her levels up, then chemo. In the mean time, beginning on Wednesday (I think), I will start with the GCSF shots to get the "good guys" all stirred up to get ready to come out and play.

Today, Coley got her immunoglobulin (IVIG), which we were not expecting. This is the nasty one that she usually reacts to very bad to. We ran it in over 7 hours (it's just finishing now at 10:30PM. Her energy was all over the place today.....partly wiped out and partly hyped up. However, no fevers and no vomitting at all today....a first in a quite a while. Also had a follow up chest X Ray to look for fluid. It came back pretty clean. Initial word back from yesterday's lumbar puncture was that the spinal fluid looked good.

Where she's now in full isolation, there's no walks around the hallways. As a substitute, we've dusted off the good 'ole Tape Game. We played BINGO today as well....love to hear her say "GEEEEEEEEEEEE.....52!!!". We also started playing Wheel of Fortune, where she tapes up the letters on the wall and either flips them over if you guess right or gives you a big "Ehhh!!!" when you're wrong. Who needs Vanna White?

Hope she sleeps as comfortably tonight as she did last night.....and that tomorrow goes as smooth as today. One day at a time from here on in.

Thursday, July 22, 2004 9:31 PM CDT

Day 162

Sorry for not updating of late, there's been a lot of goings-on here in NY and we haven't really known fully what's going on or what the plan is. Coley's been having a rough go of it over the last two weeks. Her counts have really not responded as hoped with the Cytoxan. In particular, her latest blast count (bad cells) were up to 90f her WBC count....wayyyy to high. Her fevers have continued as well and been higher, despite slamming her with all types of antibiotics around the clock. We're hoping that there is no infection and the fevers are attributable to the increase in the disease. An infection would not be a good thing as we head back to transplant.

This week, she started to have some labored breathing which they think is from some fluid that built up around her lungs. She's now on a dieuretic to reduce her fluid level--which seems to be working based on her weight coming down as of tonite. She's been in some discomfort as well from her belly and her G-tube site being very irritated and sore. They did a chest X-ray and another CAT scan to look for fungus/infection. So far everything has come back clean. The antibiotics are making her sick.....throwing up a lot throughout the day. Lots more meds now hanging on the IV pole (multiple antibiotics, anti-nausea, morphine). When she's on the pain medicines she talks a little wierd and is tipsy. She hasn't seen "Lamby's legs moving" again yet, so maybe the doseage is still a little low.

Thru all the pain, sickness she has been quite a little trooper. She hardly says when she's in pain and is really mostly upbeat, except when her fevers really escalate.

Considering the rate of increase on the disease and her overall health and risk for infection, the team here has decided that she is at a point where they need to head directly to another transplant ASAP. The at-least-six month gap between transplants that they were hoping for is not feasible anymore.....we got close, but not quite. We'll get the final day-to-day plan that tells us when she gets which chemo drugs and the actual "Day-0" tomorrow, but in all likelyhood they will want to start the heavy chemo process as soon as Sunday. One of the drugs they are using has the possibility of causing permanent hair loss (yuk). Small price to pay if we can pull her thru this.

I'll start getting prepped for another harvest at the same time she's going thru chemo (same drill as last time). If she feels OK, they are planning to do another bone marrow aspiration tomorrow to check to see if there is still evidence of host (male) cells.

So it's time to strap in for round 2 of the war. I don't think anyone knows how she'll do this time around. They re-transplanted ONE other patient that had Fanconi here and she's doing OK. Not an especially comforting feeling when the sample size for what she's about to go through equals 1. And with her overall health the way it is now (high blasts, etc.), it makes it more concerning. We'll just "strap it on" and start shooting down the 3-meter targets as they come at us and pray for the best.

We'll let you know how the bone marrow works out and what the schedule looks like soon.

Tuesday, July 13, 2004 9:17 PM CDT

Day + 153 (see new picture of the 2 movie stars)

Not too much new to report on. Coley's fevers have pretty much continued...though more regulated. She's been able to stay without fever for longer stretches and they haven't been as high as last week. When they escalate, she'll get tired and nap or go to sleep for the night and sweat them out with the help of Tylenol. Yesterday they put her on Viox, which keeps her afebrile for longer periods of time.

The chemo has taken effect. The scenario we hoped for was that it would kill off all the blast (host) cells and leave the good (donor) cells alone. This would give the host cells a better chance of taking back over. What's actually happening--though not a surprise--is that the chemo is killing off both types of cells. So it's a 'kinda good news' story. Bad cells are gone, but the good ones are falling prey as well.

So with the white blood cell count dropping in aggregate, we're looking at a couple scenarios. When the count gets to zero, they'll do another bone marrow biopsy. If there is no evidence of any good donor cells, we may head right to transplant at that time. If there is some good cells around, then they may give it some time to see if they can stage a comeback and give us more time.

Her eye is also looking much better now too, which is a relief. The cytoxan must be hitting that as well. They're also switching up on the mixture of antibiotics she's on. Her renal function was a little off so they're switching over to some that are not as prone to having kidney effects. They do a great job on keeping on top of all the 'small stuff' like that to keep her in the best overall health possible while at the same time managing the big picture.

As expected, when she's feeling well, Coley is full of spunk and chatter. She keeps all the volunteers, nurses, custodial staff (anyone who will listen to her, really) full of laughter.

So that's it really....we'll just keep anxiously waiting on each temperature check, blood count report and other testing until the full picture becomes clearer--and hope that she stays out of trouble until we make the big decisions.

Hasta luego.

Friday, July 9, 2004 9:29 PM CDT

Day 149....1 new picture

It's Friday, and Coley's been back in the hospital for a couple days. She hasn't been able to come down from low grade fevers...which began to escalate on Tuesday nite. We had a clinic visit on Tuesday when she got her first dose of Cytoxan--a chemo drug they have started to try and kill off some of the blast cells in hopes that the donor cells can 'make a comeback'. At the end of the clinic visit, she was border-line fever, but they let us go back to Ronald. They said that if her fever gets to 100.9, then call back. I left for home hoping she could hold out, and Papa came down to NY. But sure enough around 10:00PM it got to 100.9 and Kristin called the hospital. They said bring her in for a probable admit. When she got there, they call Dr. Boulad at home and he said because the fever was probably disease related rather than an infection, that he wouldn't admit her unless it was 101.3. So they all turned around around midnite and went back to Ronald.

On Wednesday morning it went back up to 101.3 so in she went for good. On Thursday morning, her blood counts came back very high. WBC was up and the blast count skyrocketed to 80 percent. Wednesday nite was a bad one for Coley. Her temp got all the way up to 103.3 and she vomited.

On top of all that, her eye was getting a little swollen and closing up. It was getting a little worse as the week went on. We were hoping it was an infection, but they wanted to get a CAT scan to rule out a solid tumor mass. I came back down on Thurs. nite to donate platelets which have been falling (she's had two transfusions over the last few days). Exhausted Kristin and Papa went home around 9:00, and they took Coley for the scan around 10:30. She did well overnight however with only low grade fevers, sound sleep and no vomitting.

Mixed results this morning. The blast count is falling (around 60and WBC is down too. Hopefully that means the cytoxan has kicked in. However, the CAT scan verified a mass in her left eye orbit--about the size of a small marble. As it stands right now, they are hoping that the mass will evaporate as a result of the cytoxan. It does look slightly better tonite. If the blast count continues to fall tomorrow, then it might just do the trick. As a safeguard, the Radiation doc's paid a visit and said that if the chemo doesn't do the trick, then they could handle it with some localized radiation. Optholmology also came up to look at her eyes and said that the left one looked good despite the tumor.

Despite all this, Coley was once again in good spirits today...mostly because her fever stayed in check. She danced with the "Dance Lady", watched "Cheaper by the Dozen" with Yvette, me and Zadie (who arrived this morning), did arts and crafts, walked around the floor and played games.

So a real tough last few days. But there's good news.....Kristin and I just saved a butt-load of money on our car insurance by switching to Geico.


Update ya soon...

Sunday, July 4, 2004 9:35 PM CDT

Overall we have had a good weekend...Nicole did not have to be admitted but still has a fever. We went to the hospital today for a checkup and blood counts. We were sure she would need her first platelet transfusion since relapsing but they are holding in the 30's (should be over 200 and transfusions are generally given once she is in the low 20's). We are guessing Tuesday will be the day and probably red blood will be transfused this week as well.

We had a great day walking around Central Park yesterday then came back to "Ronald" for rest and G-tube feeding. Coley's appetite is diminishing but at least we have the feeding tube to keep her beefed up for the next transplant.

Tonight was a great night put on by Ronald and the NYPD. The NYPD took the Ronald families to a private and secure location on the East River to watch the fireworks and put on a huge cookout. We were on a former helipad, up high with perfect view near the Queensboro Bridge. Nicole wanted to leave before the grand finale which was okay...we were proud of her lasting that long. She had a slight headache and was tired so one of the officers took us back to Ronald in his NYPD van. Nicole was very excited to get a private ride in a police vehicle.

We will keep you posted on what Tuesday brings...starting chemo.

Friday, July 2, 2004 8:36 PM CDT

Day +142

It is strange that we are counting from the last transplant still when we are waiting for a second one and are somewhere, in reality, in the minus zone again.

Coley did it again. She knows how to mess up a good weekend. This latest debacle represents 8 consective years of our anniversary ruined by medical mishap. She was approved for a home visist and trip to New Hampshire on Wednesday but we had to have a checkup at the Jimmy Fund on Friday before heading North. Of course, her fever drove us crazy, creeping up and we didn't she feel comfortable bringing her anywhere but back to NYC by Friday morning. Poor kid cried her eyes out that she couldn't go to N.H. whith her brother and sister and cousins. We thought about leaving after the 4am thunder storm on Friday morning but all slept in after a restless night and left for NYC at 9am. Low fever continues, anniversay dinner outdoors at a restaurant recommeded by one of her transplant docs was excellent with Coley in company.

Counts continue to drop, blast count (leukemia) going up and she is scheduled for platelets on Sunday. Still planning to start cytoxin on Tuesday (with no hospitalizations).

We hope we see a great firework display in NYC this year!

Prayers requested!
Kristin & Todd on our 9th anniversary, 10 will be our year.

Wednesday, June 30, 2004 5:21 AM CDT

Day + 140

Happy Birthday to you,
Happy Birthday to you,

Happy Birthday Dear Coley....
Happy Birthday to You!!!!!!!!

Hooray for Nicole….for today you are a BIG, BEAUTIFUL 6 year old girl.

Wednesday, June 23, 2004 9:05 PM CDT

Day + 133 (New pictures)

Coley had another appointment today at clinic. Not a whole lot of change or new decision making info. Her counts are somewhat stable. So she's on her way home (more on that in a minute). We're still waiting on the sensitivity testing of her blast cells being performed both at the Sloan lab and the Rockefeller Institute across the street. We're not sure if they'll be anything definitive out of the tests. However, we definately want to push this next BMT out as far as possible. We will wait and pray that her counts don't go crazy anytime soon. Dr. Boulad is pounding the streets for info from other centers in Cincinnati, Minnesota, France, Germany to get info on the low dose chemo drugs that may help stave things off for a bit, or send her into temporary remission. In either case, we are most probably heading for another transplant. The only question now, is when?

We're entering a lot of uncharted waters (nice feeling). With only one other child with FA transplanted a second time at Sloan, and noone ever taking these maintenance drugs to combat leukemia cells of a FA nature, there is a lot of uncertainty in the air. We'll wait it out as long as Coley lets us before we have to make a decision. We'll keep you updated as more info comes in.

One of Coley's doctors (Dr. Small) arranged for a private full dress rehersal of the NYC Ballet...orchestra and all. She is going to have the whole hall to herself. Dr. Small said she wants to come with her. NOT THAT SHE'S WINNING OVER THE HEARTS OF THE HOSPITAL STAFF OR ANYTHING!! It was going to be tomorrow, but whereas it was later in the day and Coley got cleared to go home for the weekend, we'll reschedule, rather than spending another whole day in NY.

The timing of the performance came by phone to Kristin just as my train was pulling out of Penn station. Papa was also on his way down to NY to drive home with them tomorrow in our car. Nicole wanted to come home soo bad to see 'Rissa and Travis that Kristin packed up and headed home in the car. Papa hopped off the train in Stamford for Kristin to pick her up. As our luck would have it, Kristin ran into severe accident traffic and as of 10:30PM, they are still on the road. Coley called me on the cell phone while I was in the cab to tell me she wanted to go, but I thought she was just having a "moment" and she'd really like the show, so I didn't turn around. Later, she told Kristin "Next time I tell Dad I want to come home, he better listen to me!" I feel horrible.

Anyway, the important thing for now is that she gets another visit home. Hope everyone sleeps in tomorrow....or Mommy will be verrry cranky!

That's it for now.

Monday, June 21, 2004 7:44 PM CDT

Day + 131

After a (relatively) long week together with Nicole at home, we are back in NYC. Kristin and I both came down to try and sort through the possible courses of action with Dr. Boulad. Here's where we stand since our last update:

- Coley's bone marrow aspirate clearly shows that she has relapsed. Her blast count contiues to rise as a result of her cells working their way back into the system and taking over some territory. Guess she is tougher than me afterall. It's currently around 26% of her cells to my 74%.

- We're looking at a couple options right now. The first would have her take a low dose of maintenance chemo drug, Cytoxan. Other centers have successfully used this as a means of getting rid of "host" cells to promote a BMT engraftment. This would be the first time that anyone would use the drug in this type of scenario, where they're trying to kill off BLAST cells from the host. The goal would be to kill the cells with the drug and try and send her back into remission without having to do a full blown BMT. First we need to see if the cells that they took a sample of last week are going to be sensitive to Cytoxan. If they're not, then it doesn't make sense to give it to her, because it probably won't work and would just introduce more toxins.


We hope to have the DEB sensitivity results back by our appointment on Wednesday.

- If we can't use the chemo drug, then we are probably left with the prospect of waiting things out until they think its time to do another transplant. They'll guage it by her bloodwork and frequency of need for transfusions (red blood and platelets).

We'd really like to put off another transplant for as long as possible. Primarily, because she still has chemo toxins in her system and doing another transplant so soon would have a compounding effect as far as her toxin levels with the chemo drugs used to prep for it.

One other thing I forgot to mention from last Friday. Nicole got to meet and have her picture taken with Jennifer Love-Hewitt at the clinic. HUBBA-HUBBA!!! I'm trying to get my hands on a digital shot to post.

Her spirits are still very high along with her energy level.

We'll let you know what happens on Wednesday.

Friday, June 11, 2004 3:04 PM CDT

Day + 121

A day we had hoped would never come....has come.

At Nicole's appointment today, we were told that there are definately blast (bad)cells in her system. We are going to have another bone marrow biopsy performed next week to more accurately figure out the situation, but for all intents and purposes Nicole's leukemia has relapsed. Looks like either the test results from last week were either erroneous or something has happened since then. Either way, it is all very surreal to think that we are actually in this situation and it has not yet sunk in totally, but it is very bad news. We started to get a little suspicious on Wednesday when her counts came back low, especially her platelets, which have been in great shape for the longest time. It's all too similar to the first time around. Today's blood work did not fare much better. We thought that by maybe discontinuing one of her antibiotics this week that her counts might rebound....but that didn't work--it was not the culprit.

I heard the news alone today (which may have been a good thing) because Kristin took a 7AM train home to bring Travis to an orthopedics appt. at Childrens Hospital. We're concerned that he's really stiffening up with the mild palsy he has. They also think he's definately more stiff than the last time they saw him, and we're going to get him some more aggressive PT. They did say that for as stiff as his lower extremities are, he's compensating very well. So I broke the news to Kristin later in the day.....fun.

So where do we go from here? Well the first thing is Coley and I are driving back tonite for the weekend. Unexpected trip home, but we'll take it considering the circumstances. At least we'll get to "celebrate" my and Travis' birthdays together. More long term, we have to keep an eye out on the progression of the leukemia. They'd like to wait as long as practical before doing anything. However, it looks like we're headed back for another stem-cell transplant. This puts us effectively back at square one.

Without question, the second transplant is more risky on two fronts. There will be more toxicity introduced into her system, and the relapse likelihood is also greater. It would be a slightly different protocol this time around, mainly because her marrow now is a mix of my cells, her good cells and her bad cells. She won't have to undergo radiation (because she couldn't tolerate another round) and the mix of drugs will be a little different. I will be the donor again when the time comes. Based on the fact that some of my cells are in her now and they know that she shouldn't reject my marrow, I am now considered the best donor.

We're in a new phase of this journey that we never wanted to enter, and never put much thought into what it would hold for her. Her roller-coaster is on the track again.

She feels well otherwise, though it's a little coincidental that she's been a little more tired lately--especially in the AM. She doesn't know about the relapse, we'll tell her in the coming days I guess. We're just praying now that it takes a slow course so that a) they have more time to consult with other centers and figure out the best protocol to follow, and b) it might allow us to get her home more often before she has to be hospitalized again.

Dr. Boulad explained that of the 14 Fanconi patients he's transplanted, that 1 other kid relapsed and was retransplanted. That person is now doing well about 15 months afterward. So there may still be some hope. Only time will tell. A lot of questions will be answered in the coming weeks and determine the course and timing of the treatment.

So now you know as much as we do. As always, we will keep you up to date with new news.

Friday, June 4, 2004 10:02 PM CDT

Day + 114

THE EAGLE HAS LANDED!

Coley is back home in Raynham. She got a temporary pass to come home from the team on Wednesday. She was very, very excited when she got the news. Just like Coley though, when they gave her the news she asked if she could go home next weekend too!! Kristin set her straight though, telling her 1 week at a time.

I drove down on Thursday so we wouldn't have to put her on the train (not crazy about the air circulation there). We hit the road early and were back in Raynham by 12:00. Coley's teacher Mrs. Blanchard called us on the cell phone around 11:30 to see if we could stop by an outside picnic the kids in her class were having to celebrate the end of the year. With the gas indicator on "E" we rolled into the picnic. Mrs. B made a mad dash to see Coley (I think she'll be sore in the morning). She carried her over to her class, which was quite a site to see. All the kids came up to her (not too close as they were pre-warned). It was like J-Lo had shown up for a guest appearance. They were all in awe that she was home. It was especially sweet to see the reaction of her best friend Taylor. She just kneeled there staring at Nicole with this ear-to-ear grin on her face clapping her hands continuously. That...was worth the trip.

The rest of her day was spent playing with Marissa & Travis and getting reaquainted with her surroundings. It's amazing how much she forgot about in the last 4 months. It's a little scary having her away from NY for the first time. Kind of like bringing home a new born for the first time. Hoping nothing goes wrong while we're here.
We'll try to keep her somewhat isolated for this first trip, so as not to spoil the possibility of making more in the near future.

Thursday, May 27, 2004 8:48 PM CDT

Update to today's update (below)....

Dr. Boulad called to inform us that all of Coley's marrow was composed of Donor cells....hooray!!! This makes the percentage increase of blast cells effectively irrelevant. He explained that in young kids especially, where the marrow is "recovering" and very active, you can see anomalies like he saw. He said the marrow "looked excellent" on both types of tests they ran on it. On top of that, he said that it was NEGATIVE for the leukemia marker that they have identified in Nicole. Each time they do a marrow biopsy, they can look for this marker to see if there is trouble. More good news.

WHEW!!! Another bullet avoided. We'll never get used to this crap. All it cost was a night's sleep, small price for good news in the end. This will make our weekend more enjoyable. Sorry for the scare for those who read Kristin's update below.


___________________________________________________________
Day+106

Just a brief update...We received word yesterday from Nicole's transplant doctor that her blast count, from her bone marrow aspiration on Tuesday, is slightly high. For those of you that have followed from day 1 may remember that a normal blast count is 0-5. When she was diagnosed with leukemia it was 30. Elevated blasts are what diagnosis someone with leukemia. She has 6-7 now which either means Todd's blood is out of the normal range or Nicole replaced some of Todd's blood with her own and she is relapsing. We should find out tomorrow the percentage of Todd's blood to Nicole's. Please, pray for 100% Todd or we are in a serious situation.

Thanks for your support and prayers.

Thursday, May 27, 2004 3:03 PM CDT

Day+106

Just a brief update...We received word yesterday from Nicole's transplant doctor that her blast count, from her bone marrow aspiration on Tuesday, is slightly high. For those of you that have followed from day 1 may remember that a normal blast count is 0-5. When she was diagnosed with leukemia it was 30. Elevated blasts are what diagnosis someone with leukemia. She has 6-7 now which either means Todd's blood is out of the normal range or Nicole replaced some of Todd's blood with her own and she is relapsing. We should find out tomorrow the percentage of Todd's blood to Nicole's. Please, pray for 100% Todd or we are in a serious situation.

Thanks for your support and prayers.

Tuesday, May 25, 2004 8:31 PM CDT

Day + 104....new pictures.

Another week has passed us by. A few events to report on. First of all, we got the results of her "T's" count and she's at 20. The goal is 200 to get her home on a long-term basis, so we're a ways away. It's still early to expect a level of 200, so we're not concerned. It's a move in the right direction and that's the important part. Hopefully next month we get a lot closer to the magic number.

Her cough is a lot better. The medicine is working and she's also on an inhaler for a short period of time to keep her airways clear so nothing bad sets in. She's also on antibiotics for another urinary tract infection, but follow up cultures look clean. Have a feeling that she'll keep battling these UTIs periodically. So long as they don't get out of hand, we should be OK.

Today she had her bone marrow aspiration. We should get some preliminary results tomorrow. Coley showed her true colors and grit when Kristin told her about the procedure which includes being put to sleep and having a long needle put into her back, she was like..... "OK". Dr. Boulad did the procedure and one of the surgeons also came in and put some silver nitrate on her g-tube to kill off some of the granulated tissue that was coming through. No biggie...

Despite the procedure today, she was very excited to go to the Prom that the hospital put on for all the clinic and inpatients (about 80 or so kids). They had food, music & dancing and all the kids got dressed up in their finest duds. Coley wore the dress that she got in the American Girl Store that matches her doll Kit. She was a little sore from the procedure but she was still out there dancing. Here's the kicker.....as she was leaving the scene early because she was a little tired, one of the nurses ran up to her to tell her she couldn't leave yet because she had been voted Prom Queen!! What, you're surprised?? She's got the tiara to show for it.

Coley's excited to see Marissa and Travis over the Memorial Day weekend. NO ESCALATORS!!

We'll keep you posted on the bone marrow results.

Monday, May 17, 2004 8:56 PM CDT

Day + 96

Well a week since our last entry and not too much to report on. Coley's "cold" is getting a little better. She's coughing a little less now, but with more discharge from her nose (OK, buggas). We brought her in for an unscheduled visit on Friday to double check, because the cough was a lot worse then and we didn't want to be dealing with an "urgent care" situation over the weekend. They said all was still good and her lungs were clear.

Today was another visit to the clinic. They took another urine culture on Friday because she said it hurt when she peed once on Thursday. Surprisingly (or not so with Coley) it came back positive today. We're on another antibiotic to battle it.

A pleasant surprise today when Dr. Boulad told me that he was going to check for T's & B's today again. As of Friday we didn't think they would be checking for another month yet. We should have results within a few days. Really hoping they are starting to generate and heading toward building an immune system. We'll get a count in a few days, but won't know if they are "functional" for a couple weeks.

A week from tomorrow (25th) she'll go for the bone marrow aspirate. From that we'll know if there are any bad cells hanging around and if the cells in there are still all Dad's. That will be past day 100! The dreaded IVIG to follow later in the week.

On Thursday, a local firehouse put on a barbeque for the kids at Ronald. Coley became a hit right away, with her Red Sox hat. The big tough firefighters found a soft spot for Nicole. When someone was taking a group picture of them, they said "wait, we need Coley in the picture" (see picture). Speaking of Sox, she's got in the habit of giving anyone she sees on the street wearing a Yankees hat a big Thumbs Down and shouting Boo Yankees!! This kid's got no fear!!

Pretty quiet weekend otherwise. We had a nice picnic in Central (with about 10,000 other people).

Gave Coley a little "hair cut". We got rid of all the stray long hairs and tightened up the "do". If you can believe it, she looks even cuter than before!!

We'll keep you posted on T's & B's and other news.

Monday, May 10, 2004 8:39 PM CDT

Day + 89

Ok, I know we said day 89 the other day....but Marissa read the calendar wrong, sorry.

We had a good day together on Sunday for Mommy's Day. Our first stop was to the top of the Big Apple...Empire State Building. We went up to the 86th floor observatory to take in the whole city from above. Statue of Liberty, Central Park, Chrysler Building, Times Square....the whole enchalatta. It was pretty amazing up there. Couldn't help thinking of the poor souls lost in 9/11 from heights higher than that. Definately worth the price of admittance.

Ooh..oh yeah, almost forgot. On our way up the escalator to the observatory elevator, Kristin had to halt to fold up the stroller. As I went up with the kids, watching what she was doing at the bottom of the stairs, Coley tumbled backward down the escalator. Yup, flat on her back, skidding down the stairs. Talk about scared to death. Of all people!! We were already so anxious about this 'cold' thing she's got going on, we really didn't need something like this to happen. After a good cry (and not just Coley), we dusted off and made our way up to the top.

After the Empire, we had a late lunch downtown at the Seaport. Coley slept in the stroller during the meal...exhausted from the earlier ordeal. So we headed back to Ronald for some R&R and to get some food into her.

We all headed off to an unscheduled clinic visit this morning to have Coley's 'cold' checked out. They did a nasal swab (results tomorrow) and a CAT scan to see if they could detect any fungus or virus in her head/chest. Good news!! ... she's clean! This test took the place of the CAT scan scheduled for Thursday which we were a bit worried about, but we got the good news early. They think it's primarily an allergy thing causing some mucous buildup in her head and upper airway. They put her on another medicine to dry her out.

The bone marrow aspiration scheduled for tomorrow has been put off for about a week because of her condition now. That's ok though...the good news from today makes it easier to wait. She doesn't need to be back to clinic until Monday, so she's got some time to get get ready for it.

We'll let you know what happens!

Saturday, May 8, 2004 8:32 PM CDT

Day +89!

Happy Mother's Day to All!
We are having the best Mother's Day weekend together. Todd took the train to NYC on Friday with Marissa and Travis, they are all staying until Monday. I know for most of you it seems like April vacation just ended! I feel like it was so long ago since we were together. Nicole was so excited to see them get out of the taxi at the corner near "Ronald." We had to go outside and wait after she called Dad on his cell wondering if he hailed a cab yet from Penn Station.

We went to Central Park today for a picnic and then did a little shopping. Walked back so Coley could take a rest and then we headed out for dinner. Nicole has a cough and running nose. Hopefully, allergies from "Central" but we will have to take her to clinic on Monday to find out. She was checked out Friday and seemed okay but she is a little bit more congested. Not good without an immune system and she is scheduled to have a bone marrow aspiration on Tuesday. Big day in hopes for no leukemia cells and that she has all Daddy's blood so that she does not have the ability to produce leukemia cells. The sad part about having all Daddy's blood...the nurse practitioner told us that Nicole can commit a crime and they will look for a male with her blood type now. Last person they should tell that to and "it does not affect hormones!"

I will miss seeing GG and Bubbie on Mother's Day and and of course Aunt Liz and Nana. Happy Mother's Day from all of us. I actually feel guilty not seeing you all but couldn't be happier being with Todd and the kids.

We did get word that Nicole has a few more weeks before her next immune cell blood draw. If she is still lacking an immune system (T cells and B cells) it will be 6-8 weeks before the next blood test. These cells grow very slowly after transplant, especially when it is not a perfect match donor. That was discouraging but...day to day.

Keep you posted on test results, big week.

Thanks for your prayers and support.

Friday, April 30, 2004 9:14 PM CDT

Day + 78

It's been almost a week since our last update....sorry. Coley's down to once a week clinic visits now, so there's not a lot of medical updates to report on. That said, there were some happenings this week.

She went into clinic on Wednesday and on the previous day, Kristin detected an odor to her urine that hinted to a urinary tract infection. They took cultures, but thought that it would come back negative whereas she did not have a fever or any other symptoms. Well Dr. Boulad called today to say that the culture actually came back positive for infection. So now she's on another antibiotic. He didn't seem overly concerned and she does not have to be admitted.

On Wednesday, she got her monthly IVIG infusion. Unfortunately, she had her worst reaction yet. The chills and fever she got in the past were accompanied with severe pain in her back and hips. She cried out for them to stop the drug, saying she just wanted to 'go back to Ronald!'. They stopped the infusion for a while and then, like last time, restarted it at a snails-pace until about 5:30. She was wiped out. Fortunately, come Thursday morning all was well again.

She's becoming all too educated on all this leukemia stuff. She understands that she needs to have a good number of functioning T-cells and B-cells before she gets into any kind of safe zone, or consider going home. When she was in 'central' the other day with Kristin, she was watching a girl rollerblading. She turned to Kristin and said, "Mom, when I get my T's and B's, I'm gonna go skating and find the best horse carraige in central park for a ride".....scary! They don't expect those types of cells to come in until around day 90. She does have a few (6) T-cells now, and the good news is that they are functional. Some patients have a lot of cells, but non-functional....so it's a good sign.

Another piece of great news. Marissa was tested again for Fanconi Anemia when she was last here. Dr. Boulad said that all the tests came back negative! What a relief!

They've scheduled another bone marrow aspirate for a week from Wednesday. We'll get to see how her marrow looks from a donor/host perspective and probably have a better feel for how her T's & B's are coming along. This will all be around Day 90, so it's a big day in our eyes.

Meanwhile, looks like good weather tomorrow, so hopefully we'll get to spend a lot of time out and about. Coley's already looking forward to next weekend when Marissa and Travis come back up for Mother's Day weekend. She's making her list out of all the things she wants to do.

Saturday, April 24, 2004 9:05 PM CDT

Day + 72

Well the week together as a family came and went all too quickly, but it was great while it lasted. GG & Papa cruised back up from D.C. on Friday morning to pick up Kristin, Marissa & Travis. Coley was sad to see them go but she got over it fairly quickly (a couple diversionary games and all was forgotten). About an hour after their departure, Bubbie and Zadie came in to town. Friday was a pretty cold day so we toughed it out indoors playing games for a while. Thankfully, she tuckered out pretty quickly and was out for the nite around 8:30.

Today was a much better day. We all made our way up to 5th Ave. to check out the American Girl Doll store. Coley scored a couple of more outfits for Kit and a backpack to match Marissa's. We continued down 5th Ave. to Rockefeller Plaza and Trump Tower (Daddy had fun buzzing through the NikeTown store!). Then it was on to "Central". Coley got a charactiture done (See new picture). She had to be a cheerleader!!

Back at "Ronald" we watched a Dance Company (Children Helping Children) perform in the dining room. She really enjoyed the show....they even did a dance to an Annie song!!

Not sure what tomorrow will bring, but I'm sure we'll find a way to fill up the day. Coley's off from the clinic until Wednesday as things are looking pretty stable. We'll just continue all the home medications til then. Hard to believe another month has gone by and it's time for the IVIG drug again Wednesday. Hopefully, they've figured out the formula this time to avoid another reaction like the first two times.....we'll see.

We've been targeting Day +100 as the possible return date, but were cautioned last week that while that day is certainly a milestone, a return home is not necessarily in the cards for sure. It will all depend on her immune system, bone marrow biopsy results and other markers. With a mismatch donor situation like we had, sometimes it takes a little longer for the immune system to come on line. I guess we'll just stick to the one-day-at-a-time routine and see how it goes. It's worked pretty good so far. Every day that we wake up without fevers, vomiting, infections and stable blood counts is a victory.

Thanks for checkin' in and we'll fill you in again soon.

Wednesday, April 21, 2004 8:11 PM CDT

Day +70!

Wow, we can't believe we are finally together as a family. (see new pictures) And are we together, 5 of us in one room at the RMH. It has been one great reunion and we are all enjoying every minute of it.

Because we are approaching the "out of flu/cold season" as long as family is healthy Nicole can finally have visitors. She still has zero immune system but all other blood work is looking great.

We enjoyed Auntie Kathy and cousin Kayla so much over the weekend. Like us they experienced the Manhattan/NYC culture shock. Kathy grew up in a city in MA and Kayla is use to Boston and Washington DC but has never seen anything like NYC. Nicole enjoyed being the tour guide at "Central", Rockefeller Plaza and 5th Ave stores. Thanks for your help and visit!

Papa and GG dropped Travis and Marissa off on Monday at RMH on their way to DC to visit Uncle Matt, Aunt Kathy, Kayla and Matty. What a great reunion - Marissa was a little standoffish at first with Nicole's lack of hair and weight gain. Travis on the other hand was a full embrace and the "partners in crime" were back in service! Coley wasted no time laying down the law to poor Travis. She makes him wash his hands everytime he touches something bad. She ORDERS him in the bathroom to wash. Often he'll reply..."I just did!!". She doesn't care however, she'll be like.."well you just touched your shoes, now get in there and wash 'em again!!!" Poor kid doesn't know what side is up.

Marissa told me tonight that it only took a day to get use to all the kids in RMH having no hair. "Now they really don't look different." Wait until we all go to clinic tomorrow for Nicole's checkup and a respiratory drug. Then they will see the real stuff (100-150 kids a day treated for cancer).

These are kids suffering with very low survival rates but at least Marissa and Travis will be exposed and realize it isn't all fun and games at RMH. They are not afraid of children with no hair or those that have to wear masks outside. We have met some great families here that we chat with and today we were joking how people walk far away from kids with masks on, thinking the kids with cancer are going to contaminate them.

Should be a quick clinic day tomorrow. Hopefully, all blood work will be in normal ranges. Daddy just received free Mets tickets for tomorrow with another Dad whose daughter has cancer. It's a 1pm game and they are taking the other dad's son and a teenage boy that has a very poor outcome and no father around. The kids and I agree that Dad should be shared. After clinic if it is nice we will
either go for our daily walk to the park or watch some movies we rented from Blockbuster. We are now members of NYC blockbuster and have the savings cards to all the local grocers.

So we now have 30 days to big day 100 post tansplant. We want uneventful clinic visits, T cells and B cells to come in for an immune system and on day +90 another bone marrow aspiration and cat scan. If all these are in our favor we may actually be on our way home in a month!

Bubbie and Zadie will be here to visit Nicole for the weekend with Dad. Mom, Marissa and Travis will head back on Friday then back to the old routing again. Mom and Papa take over on Monday night, Dad goes back to work and GG starts playing nanny.

Wednesday, April 14, 2004 9:00 PM CDT

Day +63

Hello again....

Well Coley made it through her short hospital admit. On Monday afternoon we were able to bring her back to "Ronald". It was good to get her out of there as she doesn't do to well when she's an in-patient. Her eating is virtually zero and her energy level isn't as high. She did vomit basically every morning we were there. With all the blood draws they did, drawing for cultures, levels, CBCs etc, they taxed her supply so she needed a transfusion before leaving. Good news is that she's off the Tacrolimus medication she's been on since February. The Doc's are happy for that because it can have some side-effects if on too long. It's primary purpose was to prevent GVHD (remember that from Transplant-101?) and promote transplant engraftment. Big milestone to come off of it. Also, she's off the IV Ambisome (antifungal) and has switched to an oral alternative. So right now she's left with vitamins, magnesium, folate (all oral drugs) and one IV drug. The other antibiotic will be short lived, only another few days. As a result, her clinic visits are down to twice a week....woohoo!!

Since being "home" however, she hasn't vomited and a little more energetic. The eating is still not there yet though. Mom is continuing the IV antibiotic infusions at home three times a day. She's passing the time now with her new found hobby....jumping rope. She dons her mask and heads out into the hallway and jumps away. Anything to pass the time away during these yucky weather days.

Tomorrow is the first clinic visit since discharge. Hoping that they don't find anything that would cause a re-admit. The tail end of the week is supposed to be very warm so we'd really like her to get out and enjoy. PLUS...Auntie Kathy and cousin Kayla are coming up from Washington DC to spend the weekend. Coley's super-excited.

Next week is April vaction so we're going to bring Marissa and Travis to see Nicole for a few days!!!! That's all she's been talking about lately. They haven't seen each other since the end of January. Can't wait for that reunion.

Saturday, April 10, 2004 9:50 PM CDT

Day +59

It's been awhile since we have written...everyone in the family has been sick over the last two weeks. Mom was sick for a week, a week ago and Dad is just getting over it.

Nicole has decided to follow the same path as everyone else but didn't catch strep or a cold. She was admitted Thursday because a blood culture from one of her two lines came back positive. She has an infection in her line which probably got into her blood stream. Of course, Nicole showed very little signs of being sick. I happened to mention to the doctor that she didn't seem herself and vomited for the first time in weeks on Tuesday when she woke up. The doctor decided to take blood cultures just to be on the safe side. What do you know, we get a phone call at RMH just before some cast members from Everybody Loves Raymond were visiting to throw an Easter party for the kids. They told us to come right in and Nicole cried the whole five blocks to the hospital that she was missing the party. Which of course lead Mommy to crying as well. Once we got to the hospital she was all crazy, full of energy and the doctor said, "I can't believe I have to admit her." I was still upset and she turned to me in front of the doctor and said, "Mom, it will be a snap and a clap and over like that."

What a kid. After being admitted she had a good debate with the resident about the red sox and "Ankees". She still can't understand why the "Ankees got A-Rod." She did tell the chief of transplant that the Patriots are better than the Giants and Adam Vinaterri is the best because all he does is kick the ball and wins everytime.

The good news from the week is her counts were all normal and she is now off two drugs that she needed to receive in clinic. Therefore, clinic is now brief checkups and blood draws for count checks. However, now that she is in the hospital receiving heavy antibiotics her counts have come down. The doctors tell us that this isn't even a setback, it is just a blip in the road. Hopefully, they are right. She has lost some weight throughout this, not eating and vomiting every morning again.

Spirits are high and she is now making animals out of baloons. One of her goals in life, besides attending a Yankees/Red Sox game, being a nurse like Yvette and a firefighter is to be a "baloon maker." She has accomplished one career goal!

We will keep you posted...getting closer to day +100 which is considered a big milestone.

Once again, thanks for the support and prayers.

Wednesday, March 31, 2004 8:55 PM CST

Day + 50

Back from another ride on the Coley Express...

Today was the time for another immunogobulin treatment. As you know, we were leery of this day because of what happened last time she received Respagam. Because RSV season is over with the arrival of Spring, they switched to something called IVIG. Historically, this drug has less incidence of causing reaction. Ahhh, but not our Nicole! And so goes her long day at the clinic.

Three drugs on schedule for administering today. They replaced Bactrim to an IV drug (name escapes me) because her last white count was a little low, and Bactrim can sometimes cause the WBC to lower as a side effect. Unfortunately, I gave her her morning dose of Bactrim before heading to clinic. The docs said not to worry, because one dose will do no harm. They started the day with the Bactrim replacement. Coley was receiving it while doing work with Anne Marie. They set up a mock-classroom in the waiting room and she was excited to be working at a table, rather than from her bed. In the middle of her school session, she started to vomit. Very rare as kids normally don't react to that med (they don't even premedicate them). Poor Anne Marie, she thought she was 'pushing her too hard'. Not the case. OK, that's Round 1.

Next we moved to her treatment room to receive the IVIG. All was well for the first hour or so. Then it happened....Just like the Respagam, she started to get the chills and a fever, needing mutltiple blankets to get her comfortable. This time, unlike last, she also vomitted three different times. They stopped the infusion, gave her hydrocortisone and Zofran to stop the reaction and help the nausea. She eventually perked up and they re-started the drug at half the infusion rate. They took blood cultures to rule out an infection....though they're pretty sure it was purely reaction. They gave her as much of the dose as they could up until around 6:00 pm, and called it a day.

As for the Ambisome she was due to have next, they cancelled it and rescheduled it for tomorrow. She'll get a more concentrated dose that will hold her over the weekend....so she won't have to go to clinic on Friday. This, assuming all is well overnight and tomorrow.

Good news is that her WBC is up a little from Monday, as are her plateletes and ANC. Also, the liver marker they've been bird-dogging lately is down, which is good....allowing her to keep receiving the Ambisome.

A long, hard fought day.

That's about it (as far as I know anyway). I tagged Mommy and Papa (they're "It") in the room and bugged out to catch the train.

Monday, March 29, 2004 9:08 PM CST

Day 48

Not used to writing on Monday evenings....usually on a train headed north. Unfortunately, Mommy took ill this weekend with some sort of virus. So me and lil' misss my-way-or-the-highway get to spend a couple extra days together. Mom's got to start feeling a little better before she's allowed to visit....NO GERMS!!

We had a good weekend. Uncle Mark and Aunty Donna came in to see Coley. On Saturday we made our traditional trip to "Central" (Coley's apparently on a first name place with the national landmark now, and has dropped the "park"). Bonus on Saturday....being close to 70 degrees, the sailboat guy was by the pond. So we rented Coley a remote control boat for her to buzz around. Papa would have been proud the way she "tacked" and "came about". We even chased around her duck friends.

On Sunday, we headed back to "Central". This time we got to catch the (endless) Greek-American parade. Nicole seemed to have fun waving to everyone on my shoulders. The balloon guy was back and she snagged a "caterpillar".

Back to clinic today and she was able to receive her Ambisome treatment because the level they were watching closely on Friday plateaued. We'll see if it stays stable for Wednesdays treatment. Wednesday is also the dreaded Respagam dose day. Hoping that she won't have the same reaction as last time (chills, fever) that got us admitted for a couple days. Maybe they'll give it to her BEFORE the Ambisome while the pre-medications are still fresh in her system. Have a suspicion they wore off last time too quick because they gave her Ambisome first.

Tomorrow's an off day, so we will strive to do some school work between medications. We'll have to head back to the hospital because I dropped off her Bactrim prescription at the pharmacy today and never went back to pick it up! She starts that on Wednesday too to prevent pneumonia. Well, it'll get us out of the room anyway.

Saturday, March 27, 2004 6:52 AM CST

Day 45 (Friday)

Hello folks....long time, no write. Sorry but this rotation we've undertaken is not so conducive to proper updates. It's only when I come off the bench to relieve the starter (Kristin) that I can really write anything meaningful, cuz where I go, the computer goes. So let me dip into my memory bank and see what I can come up with.

On Monday they drew some extra labs on Coley to test and see if any of the viruses that they are particularly concerned about are evident, namely CMV (which she is medicated nightly for), Epstein-Barr and one other one which escapes me right now. The good news is nothing showed up!! All of her labs continue to look good. Platelets continue on the rise (above 200 now), WBC: good, Hemoglobin: good, ANC: good. She's on cruise control now and the goal is to not to fall asleep at the wheel -- well that's an oversimplification, but you get the picture.

The one slight hiccup yesterday was that one of her liver labs is rising just a touch. It's one that they keep an eye on because of the Ambisome she gets in clinic. I asked Dr. Kernan if it was in a danger zone and she said "not even close". They drew another sample yesterday and if it's is still inching up, they may just switch her over to the oral alternative. We planned to switch to oral anyway around the 11th of April, so it would just be a little early.

So that's it on the medical front.

Mommy swung into town on Monday and got wind of Coley's little power play with her teacher Ann-Marie. Uh oh, Coley! The Sheriff layed down the law. As a result we've got a new sticker board on the wall now that serves as a "Performance-based" reward system. No workin', no rewards...it's as simple as that Missy. It's working. Many school papers were completed this week and catch this...our little friend is ACTUALLY READING!! She has been working her way thru the always classic Dick and Jane book. So proud. Ann-Marie almost fell on the floor when she showed her.

By the way, Mrs. Blanchard wasn't too happy about Nicole shunning her teacher in favor of Dora the Explorer and wrote this eloquent protest to her:

That Dora Explora
That Dora Explora
I do not like
That Dora Explora!

Not in a box-
Not with a fox-
Not in a plane-
Not on a train!

I do not like her
Here or there.
I do not like her
ANYWHERE!

That Dora needs
To let you be!
That Dora -
Wait......let me see..

Whee......I see!
I DO like that Dora's pace.
I Do like her
In her place.

I like her when
Your work is done.
I like her when
It's time for fun.

I do so like her -
AFTER your ABC's.
I do so like her -
AFTER your 1,2,3's.

OK, Dora Explora -
I'll let you be.
If you'll let my Coley
Be what SHE can be!

Is it a deal?
After school work is done?
That's how I feel -
Then Coley has won!

I love my Coley!
She's so SMART!
Let her teachers
Do their part!

So, Dora - it's a deal.
It's up to you.
Another time - another place.
You can see - I rest my case.

Thanks Mrs. B!!!

She's still holding the line a little on math though. When Ann-Marie tried to do some "patterns" work as a form of math, Coley did one problem then announced, "OK, let's go back to ABC's now!".

Grrrrr....One battle at a time!

Uncle Mark and Aunty Donna swing in on Saturday. Yippee!! (Fresh 'Attack Uno' meat) Hope they make it here before dinner on Saturday with that mishap on I95. Hoping for warm weather so we can feed Coley's Cronies at Central Park.

Monday, March 22, 2004 10:09 PM CST

Day + 41

Coming to you fresh off the Amtrak Accela (AKA Coley Express)....1 hr. delayed, thank you very much, due to a freakin' train that decided to break down in front of us in New Haven. Oh well...

Anyhoo...back to the Clinic today. Coley got her typical Ambisome treatment that went smoothly. She tipped the scales at a whopping 35 lbs today!! She's really starting to get herself a little belly now (shhhh...). We spent a lot of time with Dr. Kernan before her treatment getting caught up on all of her meds and timelines for decreasing and/or adding medications. No real surprises. She'll continue with everything she's on for at least another few weeks so the 11PM trips down to the medication fridge continue :-(.

OK teachers, close your eyes....Nicole's school teacher showed up today and Coley gave her the 'cold-shoulder' in favor of a Dora episode. She promised to return after the show on a promise that we'd shut off the TV for some schoolwork. Don't know what happened, but she didn't come back so Nicole missed out on another day of tutoring. Kristin will have to hold firm on Wednesday.

Mom and Papa came back this afternoon. Nicole and I played a bad trick on Mommy. Upon our return from the clinic she got changed into an awful ensemble comprised of a pink pajama top and lime-green sweatpants. We pretended that we actually went to clinic dressed like that (he, he). First words out of Kristin's mouth when she came into the room was "why does she have a pajama top on?". To which I responded, "oh, that's a pajama shirt....was she not supposed to wear that to the clinic??". You should have seen the look of horror on her face....Gotcha! Coley played it off well. Anyway...it was good to see Mom for all of 1 hr. before I shoved off for home. Interesting lifestyle we've developed.

So hopefully this week will be as uneventful as last week as we begin to look toward her return home.....dare we say it!! It's still a ways away with several hurdles to get over, so we'll keep our hopes in check for the time being. Next big thing is another Respagam dose next Wednesday. Remember, that's the one that gave her the reaction that earned us a trip to the inpatient floor. We don't need a repeat performance!

Sunday, March 21, 2004 9:24 PM CST

Day + 40

Well the weekend's over and obviously nothing to report on the medical front. That's good news. The weather wasn't as nice as we would have liked. It was a little cool and breezy....but we still snuck in a daily walk to Central Park. The ducks were happy to see Coley and she didn't disappoint. Half a loaf of bread was tossed in and I must say that her throwing is much improved. Look out T-ball foes!! We caught a bonus today...just as we were leaving the park the "balloon man" was starting work. Coley snagged a turtle that she can wear on her wrist. She named him "Crush" after the Nemo character.

Short of that, the three of us were pretty much house-bound for the weekend. Ofcourse lots of games and thankfully we were able to keep the NCAA tournament on in the room for the great majority of the time. That way I could watch my Bracket fall apart in front of my own eyes.

Coley wanted to talk to her teachers this weekend so we dialed up Mrs. B and the three Mrs. T's. She was little miss blabbermouth with all of them. The teachers were as happy to talk to her as she was.

Tomorrow we'll start the weekly schedule by heading back to the Clinic. Look forward to an event free week. Mommy and Papa will come back in tomorrow afternoon and I'll head back home....we'll probably high-five each other in the lobby as we cross paths.

Thanks to Zadie for hangin' out this weekend.

That's it for now.

Friday, March 19, 2004 9:11 PM CST

Day + 37

Another day at the office. A quick tub and dressing change and we're off to clinic. All went as usual...just an Ambisome infusion (her IV antifungal). While waiting to be called, Nicole got an education on sharks from a City Aquarium worker. She got to see real live shark jaws and fish eggs in a jar (she really liked those for some reason). She also made a necklace and bracelet. She also woke up with an abrasion on her hip that was stinging her. We think it was because she was lying on top of one of her IV or G-tube clamps and it was digging into her. Dr. Small said to put some cortisone on it. Whew.

The Dancing Lady came back today. I thought it best to step out of the room at that point and let them have at it. Guess I just wasn't in the mood to boogie down today. I closed the curtain on her private room and was laughing as I watched her little feet shaking through the opening at the bottom of the curtain. She said she did the freeze dance again. I got a little worried when I saw the scarves come out so I poked my head in. Not to worry though....no incense burning.

OK..Chromosome testing, here we go:
Dr. Small said that the test read "predominantly donor cells, can not rule out possibility of some host". Remember, donor is good, host is bad. She said that is as good as it gets from that test. They always through in that qualifying statement. They're doing more DNA specific testing that will be more definitive.

BUT..

She did say that at this point in transplant (1 month out) that Nicole's marrow "Could NOT look ANY BETTER". She reiterated that the sample she personally looked at looked great and the few blasts that she saw were "happy" blasts, not the "bad" kind. I told her that Kristin and I were looking forward to the chromosome results to give us a firm idea that everything is fine in her marrow. She barely let me finish my sentence before saying, "You can say that right now!". She said she does not expect anything to come back from the more specific testing to change the results. She said it with such confidence. It was a real good feeling.

All her counts remain great. WBC at 4.6, hemoglobin 11.2, ANC 3.2 and platelets 196. Her liver panels and electrolytes are in good shape too. This all makes sense, because Nicole has been saying that over the last few weeks she's "bigger", "smarter", "stronger" and has "a better memory". We feel compelled to add "fiestier".

Zadie rolled into town. In anticipation of his arrival, Coley had three UNO hands dealt out on the bed. Like walking into your own execution party. Before you knew it, Badda-bing, she's up three games to zip. She didn't let up either. She went right down the line...Trouble, Candyland, Tic-tac-toe. She was like a young Mike Tyson. Poor Zadie looked like Michael Spinks.....dazed and confused. This is my house!!!

Hope he can answer the bell for Round 2.

Thursday, March 18, 2004 8:23 PM CST

Day + 36

Off day today with no clinic visit. Back at it tomorrow morning. With a yucky day outside we were forced to tuff it out indoors. Mommy went home this morning for a much-deserved break. I'm sure Marissa was happy to see her and hopefully Travis noticed her presence in between Nick Jr. shows. Coley was (thankfully) able to keep herself busy thru the day with coloring, games and (yes Mrs. B and Mrs. Ts) some schoolwork. Managed to get three papers done today and promise to get more done over the weekend. This was helpful as I was able to get some work done without too many interruptions. Ofcourse we had March Madness on in the background all day. She broke out some of her classic cheers as we rooted on all the teams Daddy picked in his brackets. We did really good. Should have known to root for Manhattan seeing that we're pseudo New Yorkers now....that'll teach us.

She also helped with some of the household chores.....folding laundry, getting the mail and helping out down at the kitchen during lunch and dinner (well..she opened the refridgerator door. That's helping aint it?).

So we'll go for what we hope will be another traditional clinic visit. Maybe we'll get some news on the chromosome test from the marrow biopsy. This will complete the picture somewhat. If we can piece together another good report on this front, we'll be doing real well. It's a little early yet for results, but we'll ask anyway.

Zadie hits the rails tomorrow to spend the weekend. Hope he's bringing his sneakers. If it's nice, we'll be going to visit Coley's duckies. Wonder if he's up on his laundry skills? It's only been 40 yrs. We'll know if he asks me where they keep the washboard.

This just in....Michigan St. loses. Bummer!

Wednesday, March 17, 2004 8:01 PM CST

Day + 35

We apologize to our die hard fans that check the website daily. Todd was home over the weekend and enjoyed his time with Marissa and Travis. He was in the office Monday and Tuesday and didn't get a chance to write.

Nicole has been doing awesome! Papa and mom spent Friday through yesterday with her and couldn't believe her appetite. She is no longer on her G-tube feeds during the day. She is eating plenty. She is still in clinic on Monday, Wednesday and Friday. Each day she has gained a little more weight. She is over 34 pounds now and grown in height as well. We had to buy her all new clothes finally. It's bizarre that it took leukemia for her to have a huge growth spurt.

She is tapering off one drug that promotes engraphment of dad's cells. She still receives one antibiotic each night and the other in clinic three times a week along with watching blood counts closely. Everything is looking great.

She was so excited Dad was coming back last night. She was determined to wait up until 11pm for him. She called him at 10:45 to see if he was off the train and in a cab yet. Todd told her he was freezing waiting in line to hail a cab. The true city girl told him "aren't you sticking your arm out???". When Todd arrived, he was expecting to find the same chipper girl waiting for him. He knocked on the door...knocked again....and then BANGED on it. He even called my cell phone. He could hear it in the hallway and I didn't even wake up with it next to me. Nicole and I were sound asleep! He had to go back down the front desk and ask for a key to let himself in. He thought something had happened to us and couldn't beleive neither one of us heard him trying to get into the room. Welcome home Dad.

Nicole has had a little personality change over the past week now that she is feeling so well. We could call it very independent but controlling is probably more appropriate. There is no negotiating and it is usually in front of an audience. We thought this was suppose to happen at 10-13 years old. I guess it is a good sign but very nerve racking and something we will hopefully, laugh at in days to come.

Todd is on his own tomorrow so I can head back to be with the kids. Zadie will come for the weekend to help. I am sure Central Park will be on the agenda with nicer weather to come. Papa and Mom back on for Monday. This will most likely be the new schedule.

More specific bone marrow tests are due back next week. We are praying they tell us Nicole has all male chromosomes right now (Todd's). This would be great news.

Saturday, March 13, 2004 1:50 AM CST

Day + 30!!

Well today was a good day in more than one way. First, and most importantly we heard back from the lab today on Coley's bone marrow aspiration and the news is good!! Kristin called me to say that the report said that there were no indications of any abnormal cells in her marrow and there were very few 'blast' cells detected (much the same as a normal person would have). She kind of got this information informally through a phone call and she'll probably re-address the issue again on Monday to get all the details, but it is tremendously good news nonetheless.

Nicole had a long day today (as did Kristin & Papa). They had to be in the hospital at 6:15AM to get ready for her surgery appointment to place her new central line. It went well however and the surgeon was able to tunnel a new line in the opposite side of her chest. They were unable to re-use her existing site. But the important part is that it's in and working! After the procedure she had her typical Clinc procedure that included her Ambisome infusion. After that, all was clear to head 'home'. So now they have the weekend off. Hopefully some good weather will come their way and they'll be able to go duck-feeding.

Finally, there was the fundraiser in Stoughton. It was just a wonderful event with standing room only attendance. So many friends and family there...all there to support Nicole. It was so great to see so many friends that I haven't seen in a long time and was very uplifting. There was a tremendous amount of raffles and auction items that raised an incredible amount of money. Kristin and I are forever greatful for all of the generosity from the over 250 people that gathered. There was great music played by Political Asylum (unfortunately, with all the people packed in there, not much room to dance). DJ David Jordan spun records early into the morning for all the 'younger' crowd to whoop it up. At that point it felt like an early 20 yr. (yuk!) reunion. Just a great atmosphere, and altogether a fantastic evening.

Kristin, Nicole and I would like to deeply thank all the volunteers and the Club for all their hard work and time spent in pulling the event together. As always, we are awed by the outpouring of support for Nicole.

Well it's off to bed now. I figure I have about 3 1/2 hrs. before Travis puts his mug in my face at the bedside telling me he has to go to the bathromm. Think I'll just leave the light on in there and tell him he's on his own.

Heartfelt thanks again to everyone! Words can not explain our appreciation!

Wednesday, March 10, 2004 7:58 PM CST

Day + 28

Another typical clinic visit today. Nicole's starting to put on some weight. She weighed in around 33lbs today, her tops in quite some time. Word of caution if you talk or run into her....she's a little sensitive about it. I called her a "Little Fatty" and she took a swing at me. I'll have to come with a more gracious term. A lot of people were commenting on the gain though, so we're happy about that. She got her Ambisome (antifungal) IV medication which took a couple hours or so.

We also had some consultation on her central line...which is beginning to 'act up'. Her line has 3 ports on it and 2 of the 3 low longer are functional (they don't flush or have any blood return). In addition, 2 of the 3 stitches that hold it in place on her chest have come loose. They made a decision to replace it with a more permanent version (a Broviac). The type of line she has now is prone to failure, but is the preferred type to have during the transplant phase because it's easy to extract in an emergency situation (when infection is suspected). Now that she's past that 'active' transplant phase, they feel comfortable going to a more permanent and reliable version. They just called us this evening and asked us to come in for a pre-op checkup tomorrow morning because they have a slot available in the O.R. to place it in on Friday.

Today was her last clinic visit to the "Zoo" (temporary clinic). The new, state-of-the-art Pediatric Day Hospital opens tomorrow. It is supposed to be unbelievably beautiful, spacious, bright and with a lot of private infusion rooms. It even has a special waiting section for new transplant patients like Nicole. Up to this point, we've chosen to go to a remote corner of the floor where there are no other kids for our "hallway infusions". We've coined it Coley's Corner. Good riddance to that place.

I'll head back home tomorrow afternoon to be with the kids and venture into work for the first time in eons. Dr. Tickles (Papa) will take up the slack here in NY with Mommy.

Tuesday, March 9, 2004 7:36 PM CST

Day + 27

Off day today. No clinic visit (although we almost made an impromptu visit). When we were changing Coley's central line dressing we discovered that two of the three stitches that anchor the line to her chest had come loose. We called the clinic to see what they wanted to do, and they said to wait until tomorrow for them to see it and evaluate. We suspect that they will want to put in a more permanent type of line (like the one we had in Boston). The percutaneous line that she has in now is there because it is easier to take out in the case one develops an infection during transplant. By default, they usually just rip it out as the first measure because they are highly susceptible to infection. Since she's past that point, it may be time to return to a more permanent type of access line. We'll let you know after our visit tomorrow.

Short of that, a pretty uneventful day. Coley did a lot of homework with Mommy (I'll bring it in to Mrs. B & 3 Mrs. T on Friday). No TV was on, so we got some undivided attention to school work....a first in a long time. I did some work on the computer while they did schoolwork. She had a very good day eating. A few bites of sandwich and chips for lunch and a big dinner consisting of chicken legs, broccoli, rice and yogurt for desert.

For you tape-game fans, we came up with another motivational game while cooped up here in RMH. Coley is the "car" and we are the "gas station". She takes a 'road trip' around the room, then comes back to GAS UP on some yogurt or pudding. After a few trips around the block, wala!! we're 1/2 way through with a pudding snack (or yogurt)!! Thank God for gullible kids!

Hopefully we'll get more confirmation of the marrow tests tomorrow or Friday. They'll also look in the marrow for chromosomal evidence that 100% of the cells in her marrow are from the donor. If they're all male chromosome, BINGO, they're mine. Let's hope so! Still looks like at least Day + 100 is the earliest they'd consider letting us go home. Have to make sure there's evidence of her immune system reconstituting and that she doesn't contract any viruses.

Miss you Yvette....come see us in clinic.

Hasta Luego

"Team Coley"

Monday, March 8, 2004 4:33 PM CST

Day +26

We will get right to the good news...Nicole had her bone marrow aspiration in clinic today around 12:30. When she woke up she said,"I didn't even feel that one." She was sleepy for awhile and then received her typical antibiotics which take about 3 hours. She gets pre-meds to avoid reactions. The benedryl knocked her out again for another couple hours, didn't get back to RMH until 4:30. Tomorrow morning we will have to ask her how Letterman was!

During her nap, her doctor that did the aspiration, came to tell us that she took a quick prelim look at a smear of her bone marrow...Everything looks great! The lab will give a report later in the week with more detailed counts of various things. But no signs of "L" at this time!

Sorry, for no entry last night. We played games with Nicole until 10! I fell asleep before Nicole and Todd fell asleep watching Sports Center.

Dr. Boulad sat and talked with us for awhile during her infusions/nap. We have at least another 60 days here. That is the timeframe when her chances for getting various infections is much less and she should be receiving less antibiotics in clinic to prevent them by day +90.

It was great to see everyone at the Donahue's house(thanks Lisa, John, Deb and Steve). Happy Birthday from Coley to Matt White and Mary Korotsky and cousin Jill.

Did you see the new pictures? Coley thinks we could make some cool play clothes out of the RMH drapes like the Sound of Music kids.

Thanks again for all your support, thoughts and prayers.

Kristin and Todd

Saturday, March 6, 2004 10:12 PM CST

Day + 24 (New Pictures from "home")

A day of R & R on a blah day in the city. Not a whole lot to do in solitary confinement, so as you might imagine it was a fun-filled day of games, movies laundry and medications. Coley had a lot of energy even though she had a late night, tossin' and turnin' until around 10:30. Another day without throwing up in the morning and thankfully no fevers.

Coley's record in games today was 6 and 1. I beat her in Attack Uno (c'mon, it was an accident). Boy was she TICKED!! Cards went flying everywhere. What a sore loser. I have no idea where she gets that from. I never threw ANYTHING after I lost. Well there was the occasional football helmet and baseball bat, but other than that...

The weather was crazy today. We saw some rays of sunshine and decided to take a walk. However, by the time we got dressed and ready and headed down to the lobby, it started to rain. So we headed back upstairs and played a few more games. Finally, at 5:00 the sun broke through and we headed out for some much needed fresh air. We meandered our way through the streets to Central Park. Coley wanted to feed the duckies again, so I bought a $2.75 hot dog, threw away the meat and let her go to town on the roll. I'd say about 25% of her tosses actually made it to the water. Poor ducks.

Thought the fresh air would tire her out, but to no avail. She got a second wind and ran crazy around the room before finally settling in around 10:00 again. Not like we had anything better to do anyway..

Uncle Keith heads back tomorrow (head hung low from not winning any games). He actually taught Nicole how to do word-search games while he was here. She's a very good 'circle-er'.

Mommy's back tomorrow....yippee!!

Saturday, March 6, 2004 10:12 PM CST

Day + 24 (New Pictures from "home")

A day of R & R on a blah day in the city. Not a whole lot to do in solitary confinement, so as you might imagine it was a fun-filled day of games, movies laundry and medications. Coley had a lot of energy even though she had a late night, tossin' and turnin' until around 10:30. Another day without throwing up in the morning and thankfully no fevers.

Coley's record in games today was 6 and 1. I beat her in Attack Uno (c'mon, it was an accident). Boy was she TICKED!! Cards went flying everywhere. What a sore loser. I have no idea where she gets that from. I never threw ANYTHING after I lost. Well there was the occasional football helmet and baseball bat, but other than that...

The weather was crazy today. We saw some rays of sunshine and decided to take a walk. However, by the time we got dressed and ready and headed down to the lobby, it started to rain. So we headed back upstairs and played a few more games. Finally, at 5:00 the sun broke through and we headed out for some much needed fresh air. We meandered our way through the streets to Central Park. Coley wanted to feed the duckies again, so I bought a $2.75 hot dog, threw away the meat and let her go to town on the roll. I'd say about 25% of her tosses actually made it to the water. Poor ducks.

Thought the fresh air would tire her out, but to no avail. She got a second wind and ran crazy around the room before finally settling in around 10:00 again. Not like we had anything better to do anyway..

Uncle Keith heads back tomorrow (head hung low from not winning any games). He actually taught Nicole how to do word-search games while he was here. She's a very good 'circle-er'.

Mommy's back tomorrow....yippee!!

Saturday, March 6, 2004 10:12 PM CST

Day + 24 (New Pictures from "home")

A day of R & R on a blah day in the city. Not a whole lot to do in solitary confinement, so as you might imagine it was a fun-filled day of games, movies laundry and medications. Coley had a lot of energy even though she had a late night, tossin' and turnin' until around 10:30. Another day without throwing up in the morning and thankfully no fevers.

Coley's record in games today was 6 and 1. I beat her in Attack Uno (c'mon, it was an accident). Boy was she TICKED!! Cards went flying everywhere. What a sore loser. I have no idea where she gets that from. I never threw ANYTHING after I lost. Well there was the occasional football helmet and baseball bat, but other than that...

The weather was crazy today. We saw some rays of sunshine and decided to take a walk. However, by the time we got dressed and ready and headed down to the lobby, it started to rain. So we headed back upstairs and played a few more games. Finally, at 5:00 the sun broke through and we headed out for some much needed fresh air. We meandered our way through the streets to Central Park. Coley wanted to feed the duckies again, so I bought a $2.75 hot dog, threw away the meat and let her go to town on the roll. I'd say about 25% of her tosses actually made it to the water. Poor ducks.

Thought the fresh air would tire her out, but to no avail. She got a second wind and ran crazy around the room before finally settling in around 10:00 again. Not like we had anything better to do anyway..

Uncle Keith heads back tomorrow (head hung low from not winning any games). He actually taught Nicole how to do word-search games while he was here. She's a very good 'circle-er'.

Mommy's back tomorrow....yippee!!

Friday, March 5, 2004 9:36 PM CST

Day + 23

Well after a lot of waiting, we're finally back "home". Arrived back at RMH at around 5:45. Coley had an early wakeup this morning, but that didn't keep her from having a very FULL day. Some TV in the morning (Dora, Blues Clues, Dora, Blues Clues, Dora.....well you get the picture). Thankfully the "Dance Lady" came in to break the monotony. Coley had a blast doing the 'freeze dance' and other funky moves...she's very talented. Right after that, her teacher came in to work some more math....so Uncle Keith and I made a dash back to Ronald McDonald to drop off some stuff to lighten the load for the final trip. We didn't catch the session, but we heard she was a star.

So as expected, no fevers today and we got the clearance to go home after the 48 hr. admit was complete. After a quick food shopping trip to fix her some dinner and administering a few drugs it was off to bed for her. Finally closed her eyes at 10:30. Hope she sleeps in tomorrow!!

No blood counts today. They gave her a break from drawing blood, so we'll see what Monday looks like. Bone marrow aspiration scheduled for 11:00. Will be on pins n needles until we get preliminary results on Wednesday (we hope).

Just trying to stay healthy until then to make sure they can do it. Will check in tomorrow.

Thursday, March 4, 2004 8:51 PM CST

Day 22

Back in the inpatient routine...short lived we hope. Never realized how much we really dislike being all gowned up with mask & gloves! Ronald McDonald House never looked so good. Coley didn't seem to mind, especially since it was raining here today. She got some hospital schooling today and did very well (Mrs. B & 3 Mrs. Ts would be proud). I think Mrs. Trucchi's mermaids made it here today. I think one flew over my head on her way to see Coley. I sure how that was rain that dripped onto my forehead!!

I think everyone here is convinced that yesterday's events can be chalked up to the Respagam drug and Coley's allergic reaction. She hasn't had a fever all day. She did have to have a red blood transfusion however today. The feeling is that with all the blood they drew for cultures and labs, that they brought her hemoglobin down. She's pinked-up a lot as a result. They did say that her reticulocyte is high. That's a good thing because it shows that she's hard at work making new red blood on her own. Platelets are also up. WBC and ANC are down, but we hope that's just a dilution effect from all the fluids she's had over the last 36 hrs. So long as the cultures come back negative, we should be all set to go back to RMH tomorrow sometime. She'll get some of her meds during the day, so I don't expect a discharge until the afternoon. Good news is that it will substitute for her Friday Clinic visit, and we won't have to be back until Monday for her bone marrow aspiration.

Kristin took the opportunity to head back to see the 'Mommy deprived' Marissa & Travis. Uncle Keith will swing into town tomorrow to play subsitute Mom for the weekend. Hope he's up on his laundry and cooking skills! Another Attack-Uno victim for Nicole to pick on.

Speaking of games, Nicole had a spirited game of Trouble today with one of the volunteers. She was a nice woman with a thick English accent. The ever-attentive Nicole picked right up on it. At one point in the game (when she was losing terribly) she looked at her and said...in classic English accent...."This game is just horrid!". Not sure where the heck that came from. Kids these days!!

Will check in tomorrow....from the Ronald House, hopefully.

Wednesday, March 3, 2004 7:55 PM CST

Day +21

Interesting day today. Started off with a nice big throw up at 8am but once again, fine after that. Went directly into the tub and had the very long dressing change. She started taking the dressing (3X3inch bandage) off her central line. I went into the shower, got dressed and Todd was still "working" with her to get it off so he could get the new one on. She tortures herself pulling it off millimeter by millimeter. Has to be done her way!

We gathered up our things for the walk to clinic, another beautiful day. She needed antibiotic infusions then we were going to do a couple of errands. The doctors let us know that she was getting an additional med to prevent RSV (respiratory virus) that she only gets every 3-4 weeks. Of course, it couldn't be given at the same time as the other infusion so our day was now extended from a 3 hour stay to 5 to 6 hours. The first med infusion, the antifungal that she has been receiving every other day, went fine. Not so good on the RSV however. Shakes, fever, the whole works started. We think that she had an allergic reaction to the medication. The doc's aren't taking any chances and have chosen to re-admit her to monitor her and administer some antibiotics. So we are back in the hospital for probably 2 days...until the blood cultures come back.

Other good news, her white count and ANC went up on their own, within normal range at 6,500 and all other counts stayed the same -- so no transfusions or GSF required...hooray.

Bone marrow aspiration is scheduled for Monday (anxiety level is very high). We will get prelim results on Wednesday and final results next Friday. Prayers, prayers, prayers...they have worked so far.

Tuesday, March 2, 2004 8:15 PM CST

Day +20 (new pictures)

Nicole did not have to go to clinic today but what a night. We have a faulty pump for infusing her G-tube feeds that went off about every 20 minutes. We know its the pump because we have been doing this for almost 8 years now including Marissa's past.

We were on the phone most of morning with a "home" health care supply company ordering her infustions, flushes, dressing changes, etc. Of course, a new pump as well. In the late afternoon after all the paperwork, follow up calls, etc. we took a short walk to Central Park. Had to be back to administer another med. She had a ball feeding her ducks (see the new pictures). We actually had to buy a hot dog to give her bread to feed to the ducks! The hot dog had toxins - right in the trash! If we don't cook it and it's not in a wrapper, she don't touch it!

Tomorrow is a big day in clinic, we get her counts which are hers with no drug "enhancers." Hopefully, she won't need transfusions or GCSF to boost her white count. She will also get another big antibiotic that she can't recieve at RMH because she has an allegeric reaction to it and there are protocols before administering.

On a different subject. We wanted to acknowledge Todd's friends at General Dynamics for their tremendous contributions to the fundraiser last weekend. I'm told that there were some good prizes that have been held for a special GD raffle due to the number of tickets sold. Thanks so much. Good to see Eileen Canniff, Sandra Giampa, Greg Smith and John Cogdell at the event. Thanks Carole, et al for all your efforts. We're blessed to have the support of such good friends at GD!!

We'll check in tomorrow...hopefully with good counts and no surprises.

Todd & Kristin.

Monday, March 1, 2004 9:18 PM CST

Day +19

Nicole was sad to say good bye Papa as she was getting her meds by central line in clinic today. But, within hours, so happy to see Daddy. Daddy and Papa actually saw each other in Penn Station while returning to their "homes".

Today was a clinic day, no walks in the Central Park but a beautiful walk to the hospital. Nicole loves going out of her room no matter where we go. She is truely amazing us with the energy level and of course controlling personality. She refused to be tutored today in her infusion room and wanted to watch tv instead. With another mom and daughter in the room, she won!

Todd showed me some pictures of Nicole's fundraiser...thanks to all! It looked like fun and what a cause, we appreciate it more than you will ever know.

Her counts were completely normal today. They may go down below normal but or course there are drugs planned for that. She is eating a little and tolerating her G tube feedings. She has beaten all records for FA AML kids. Hopefully, she will stay on track and have a 0 blast count in her bone marrow next week (no luekemia).

We are very settled in at our RMD room, not too bad and of course very clean!

Thanks to all, again, for your support and prayers.
Kristin, Todd and Nicole

Sunday, February 29, 2004 8:38 PM CST

Day +18

A different kind of journal entry today. A fantastic thing happened today in the town of Raynham. Many, many wonderful people took the time to attend a fundraising event there for Nicole. The outpouring of support for our whole family continues to be astounding, as evident by the number of friends, teachers, neighbors, family and colleagues gathered at Gaff's Bar in Taunton. Quite a humbling experience to know that so many people continue to have Coley in their thoughts and prayers.

It was obvious that a lot of people spent a TON of time organizing and gathering the food, raffle prizes, auction items and attendance. There was enough food there to feed a small army. The entire event was awesome, highlighted by the much anticipated winners of the impressive auction items that included a signed Adam Venaberry shirt, Club seats for a Patriots game, Celtics tickets and other autographed memorabelia.

Kristin, Nicole and I are deeply touched by the generous giving of all of our friends! We will be hard-pressed to find a way to appropriately thank everyone who made it such a wonderful event.

Notwithstanding, we'd be remiss if we didn't publicly thank a few people. The Gaffney family for donating their facilities and staff. Jodi Capobianco (aka Superwoman) for organizing the event along with Sue Gaffney. The Trucchi and Kennedy family for donating a tremendous amount of food. Paul Leclerc for donating several sports auction items. Donna Morin, Michelle Uzzo, Lisa Doyle & Linda Frost for helping out with the raffles.
I'm sure that Coley could feel the luv all the way down in NYC. Oh, geez..that reminds me. Coley had another good day in the city. No more throwing up in the morning even as Kristin INCREASES her overnight G-tube feed quantity. She continues to be upbeat and incident-free. Another walk through Central Park on a very warm day. She even downed a whole ice cream...the Lil' fatty.

Bitter-sweet return to NY for me tomorrow morning. It'll be sad to leave Travis & Marissa. It was great to be with them and see so many friends back home, however I miss the Queen of New York and I'm starting to have "Annie" withdrawals.

Thanks again to everyone for a great day!

Saturday, February 28, 2004 4:11 PM CST

Day +17....sorry for the delay.

"Home" at the Ronald McDonald House and all is well. Coley was very excited to get "home" and has adjusted in just nicely, thank you very much! An earlier discharge than expected on Thursday (we're used to the 5:00 PM discharges in Boston -- just in time to hit rush hour). But we were ready for 'em. Quite a site to see Nicole with no IV lines hanging off of her. Feel safer without them. Y'know if you're not careful, you can step on those lines and rip the central line right out!....but we know that already now, don't we.

Another stroke of luck our way as well. Nicole is getting visiting nursing services while at the RMDH as we still have to administer some IV drugs ourselves. Well it turns out that good 'ole Yvette also works part time for the health services organization, so she scooped up Nicole and now she's her primary nurse in the hospital as well as her visiting nurse. Coley was Soooo excited!

I came home to escort (proudly) Marissa to her 2nd grade dance, so Kristin's manning the fort with the help of Papa. She had her first clinic visit which went off without a hitch. Her counts are stable and she received her antifungal IV drugs. Dr. Boulad mentioned that she's the fastest Fanconi Anemia patient they've had to come out of transplant. She's also eating well and tolerating her G-tube feeds so they also took her off her TPN (IV nutrition). This is good news, because long term TPN dependency can cause liver complications. She only needed it for 1 day post-discharge. Plus it's one less thing we have to worry about administering to her at 'home'.

They took a long stroll through Central Park today in her new supa-stroller. She's got her own steering wheel on the seat bar that makes all kinds of pleasant, RECURRING, sounds. She was glad to be outdoors on such a nice day.

So things are going well so far away from the hospital. Every incident-free day is a small victory. Hopefully Monday's visit is as good as Friday's.

Tomorrow I'll go to the Raynham event for Coley. Looking forward to seeing all the people that have been offering their support and prayers through all of this....and give them all a great big thank you.

Will check in afterward.

Wednesday, February 25, 2004 7:15 PM CST

Day 14

== New Address below ==

Good news keeps coming! A great day for Nicole, she slept in until almost 9am. Probably because of the bed and pajama change from the 5am throw up. Once again, didn't bother her and right back to sleep. No fevers, no rashes and no listening to mom and dad anymore. She did great at school today - tutoring was in spelling and phonics. We each took a run back to the RMH with clothes and Nicole's "stuff". The room has been disinfected for her which turns out, by the way, that this was highly recommended by the staff here! She is so excited to get out of here. She stood by the glass door looking out of her room and said, "Boy it's beautiful out there, I can't wait to leave." That was just looking out into the colorful hallway of the pedi floor.

Here's the good news...her platelets keep going up on their own which is nice not to have to continue getting transfused. Her white count is still way up there, in the 30K range but should be coming down over the next few days to normal ranges. The best news was when one of her docs came in and told us that her blood test came back from the other day to determine how many of her white cells are Todd's and how many are hers. The vast majority should be Todd's because hers had leukemia in them. 100f her cells are Todd's. Huge milestone!

We had some training today on running a lot of her meds through her central line at home (Nicole calls the RMH her NY home).

The doc's reminded us that it is very common to expect to be readmitted at least once from our 'furlough' for some type of infection or fever. Maybe luck will continue to be on our side and we'll avoid the inpatient floor altogether. As always, we'll take it day by day. No word on when we'd go home for good. Figuring at least 90-100 days at the Ronald McDonald House. At this point, as well as things are going we aint gonna buck the system and push for early release. What's an extra month or so either way in the scheme of life.

Nicole is working very hard on some presents for Yvette, her nurse who has been out sick. She is coming back tomorrow - just in time. We have missed her so much.

We thank you all again for your thoughts, prayers and support.

By the way, no movies today! Although, Nicole told us today she wants to be Grettle in the Sound of Music. And Kim - her favorite song is "So Long, Farewell"!

Tuesday, February 24, 2004 7:30 PM CST

Day +13

Lucky 13 - Nicole's counts are so high today that she won't be receiving anymore GCSF ("G")to help boost her WBC. We expect them to come down into normal range shortly. We hope so, or else she'll turn into one big white cell at this rate!! She is tolerating her G-tube feeds great and going off a lot of her antibiotics by IV. No fevers, one throw up at 7am which of course didn't phase her. She should start feeling better now that some of the antibiotics are stopping. She will go back to RMH on a few strong ones that will help fight various viruses and fungal type infections.

WE ARE OUT OF SECLUSION ON THURSDAY! Back to RMH for a couple months but boy will that be a great change. She won't be able to be in crowds (malls, restaurants, school, etc.) for at least 100 days. She will basically be either in her room, outdoors in open air or at the Sloan Clinic until further notice. Her lymphocytes (a white blood cell) won't be mature for 3 months which fights viruses. She should be all set in fighting bacterial infections at this point. She is already producing her own platelets--they went up even more today. Hopefully, without the G she will still hold her own. She will have to go to outpatient clinic every other day and we are scheduling a bone marrow aspiration for 10-14 days. Say your prayers that the leukemia is gone!

Mrs. B. and the 3 Mrs. T's she did awesome in math today. She is reading her text book on-line at Starfall.com.

With all the gifts you have all sent, packing is a challenge! Todd already took a couple loads back to the RMH. Of course, I (the germ nazi) arranged for the carpet, curtains, vents to be cleaned and the shower curtains to be changed! We will feel weird walking around Nicole without masks, gowns, and gloves. She still gets mad at us when we go even one second without them on. If she catches us, she's like, "Mom, Dad.......GERMS, dontcha know? duh!!!!"

Dr. Boulad wrote us an email today. He's out sick. He is very happy and proud of Nicole. We hope to see him by Thursday before we go to RMDH. If not, we'll probably see him Friday at the clinic.

Monday, February 23, 2004 9:59 PM CST

Day +12 (couple of new pictures)

Today's day started out very well....and not just because we didn't rip Coley's new central line out of her chest. Oh, there was that one vomit at 7:00AM...but short of that, OK. Because...,

Her WBC went up to 17,500 from Sunday's 8,800 count. Good news obviously. What's better is that her platelet count is also up (it hasn't gone UP any day in the last 2 months!). And the hemoglobin count is also holding. And with her ANC also increasing, this all points to the fact that she's making her own cells.....in other words, she's engrafting!!!

Ofcourse the WBC numbers we're looking at are artificially high because of the GCSF medication. They've started to decrease the dose and we'll see where she stands in the morning. They are also starting to modify/decrease some of her other meds. They took away one of the antibiotics today that is the most toxic of those she receives. They'll probably continue backing off other meds as the week goes on and see how she responds. If all goes well in the way of no infections/fevers, etc., they will likely let us go to the Ronald McDonald House at the end of the week.

When they told us this, we were very surprised. It is obviously ahead of the expected timeline for her to begin outpatient care. We're excited at the prospect, but as always not trying to get too geared up for it in case something goes awry.

--- Hurry back Yvette, we don't want to miss you! ---

Tomorrow they will draw a blood sample to see what the perentage of my cells to Coley's are. Recall that they would like to see it be 100% of my cells. Dr. Kernan remarked that with the WBC count that she has today, she expects the results of the test will be favorable, i.e. she would not expect her to be making that many WBC with her own marrow. We won't know those results until Friday at the earliest.

The big test is still yet to come, which is the bone marrow aspiration to see if there are any leukemia cells still in her marrow. That comes in another couple of weeks. She's far from out of the woods, but things seem to be going well so far.

So all in all a good day! Coley was able to see her sister and brother for the first time in over a month via web-cams. Nicole was so excited, she almost jumped off the bed screaming, "Marissa!!" They had a great time yukking it up. Travis wouldn't keep his goofy mug away from the camera. Marissa was a little spooked at Nicole's hair loss, but she got over it. She made Marissa laugh by putting her bandana on backward to look like little red riding hood.

She watched Annie again because, "I haven't watched that in soooo long!". Yeah sure.

Sunday, February 22, 2004 5:49 PM CST

Day +11

I know this is usually called "Todd's Journal" but surprise,it's Kristin!

First, we recovered emotionally and physically from yesterday's ordeal. Although, Todd almost jumped out the 9th story window when he saw the Nicole's line on the floor, he has forgiven himself for the accident (keyword). Nicole recovered amazingly from the exhausting surgery, "pokes" and being surrounded by many doctors. As the saying goes, "everything happens for a reason." Not sure what it is yet but enough about yesterday.

This morning the attending doc came in with Nicole's WBC - 8,800(normal is 5-10K)! And her ANC is 4.9, which is the normal range for fighting infection. Her cells are coming in so quickly from a medicine that helps the cells to multiply (GCSF). Todd took this same drug for a week before donating his stem cells for transplant. Nicole's cells are most likely immature but it is still a great milestone. The GCSF will be decreased to see how she does on her own. No fevers, no rashes, very perky and demanding!

Again, played Uno Attack, Barbie Uno, war, made beaded jewrely, and painted with Tammy, her favorite activity staff person. She is really improving her cheating skills, we are thinking of bringing her to Vegas when she recovers. She had a special surprise visitor, Ms. Christiansen her former pre-school teacher. She was in the city visiting with a relative and stopped by, Nicole was very excited.
No movies today!

Again, thanks for all your wonderful entries, prayers and support. Kristin & Todd

Saturday, February 21, 2004 6:52 PM CST

Day 10

Well we were all set up for a nice boring weekend....remember now, boring is good! That didn't last too long. Around 10:30 we were walking around the room putting up stickers on the chore board. Well I went to pick Nicole up and her IV line got caught somewhere. Next thing I know, I see the central line on the floor and she's screaming. It ripped right out of her. We go to DEFCON-1!! Nurses, doctors come rushing in....lots of blood, lots of panic (on our part). To make matters worse, they were trying to get an IV started on her hand so they could continue her meds and have an access point to give her platelets and sedation medicine when they try to replace it. Well, they couldn't find a vein in her hand, arm or foot....even though they poked her several times to try. Stress level at this point....super-high.

Finally the IV team came up and was able to insert a line. Luckily there was a pediatric ICU attending surgeon available and he came up to insert her new line in the procedure room they have here on the floor. He was able to put one in on the other side of her chest, and all seems to be well again for now.

We sooo did not need this.

Short of that however, we actually had a pretty good day. The Drs. told us that her WBC went up yesterday from 100 (0.1) to 2,000 (2.0)! This is a great bump and a good sign. We expect the number to go up and down for a while, but that was good news to be sure. We'll keep you up to date.

Also, Coley's typical late afternoon fever & rash did not appear today. Perhaps this is related to the anti-fungal medicine she's been receiving. They didn't give it to her today, and no rash. She'll now get it every other day and get pre-medicated with Benadryl whenever they infuse it. Let's hope this is the culprit.

She was pretty laid back today with all the hub-bub and sedation, so we had a quiet afternoon filled with a couple of board games and a movie. Hoping for a quiet nite with no after-effects of today's mishap. Want to put this thing behind us and keep moving like we have been.

Today's Moral -- "..always look to make sure you're not stepping on your child's Central Venous Line before hoisting them upward for any reason"

Stay tuned for the next episode of Coley's Great Adventure....

Get better soon Yvette....Coley misses you (and so do we...we have stories for you).

Friday, February 20, 2004 8:21 PM CST

Day +9 (new pictures)

A pretty decent day overall for Coley. Biggest hair loss day to date....big clumps coming out now and it's very wispy and patchy. She held true to form again today. She got a low grade fever and rash again in the late afternoon. Then took a nap and woke up with both gone again. They're going to stop one of her anti-fungal meds for a day tomorrow to see if that makes a difference. She may be having a mild reaction to it. If it does, then they'll pre-medicate her with Benadryl before giving it to her again.

WBC came in at 0.1 today, and this may be the beginning of a growth trend. It'll move around a bit from day to day, but we hope it is on its way up. Everything else in the labs looks OK still. Transfusions will be likely in the next couple of days.

Marissa & Travis went back home today with GG & Papa. It was great to see them. Coley says thanks for watching her while Mom & Dad got to spend time with her brother and sister. Marissa loves NYC....the stores, Oh the stores!!!! I think we're in for it in another 8-9 yrs or so with her! Travis was fun, he just liked to play all the arcade games at the Ronald McDonald House....and drink his chocolate milk.

We'll hope for a good day tomorrow and maybe a bonus of a higher WBC count.

We figured that we've been sooooo lucky for the past few years(ha!), that Kristin went out and bought a NY Lottery ticket tonite. We're a shoo-in!!

Look for us on TV with our check!!!

G'nite.

Thursday, February 19, 2004 10:40 PM CST

Day +8

Not much more to report on today. Nicole had a very late night last night. She stayed up for about an hour after the 10:30PM chest xray they did. At 6:30 this morning she woke up from her sleep to vomit. She napped (thankfully) for a few hrs around 4:00. She never developed a fever or rash until later tonight....around 8:30 again. It was the same thing as last night. Same time, same type of rash in the same spots, same low grade fever, no discomfort. This could be anything from a virus, late reaction to the Rabbit ATG, or a number of other possibilities. Her fevers have been low and short lived, so they're just keeping an eye on it for now and doing regular blood cultures to make sure she's getting the proper antibiotics.

Wouldn't be surprised if tomorrow is a repeat performance.

Hair is starting to fall out like crazy now. It's everywhere in her bed/pillowcase. She's donning her fist Bandana today because her head was so itchy. Kinda like getting a hair cut and all the hair falls down your neck.

At least that's what people tell me (been a long time since I had a lot of hair fall anyhwere...except the tub drain).

She got platelets again today. Her count was really down at 10,000. Unfortunately, the stuff I donated last nite could not be cleared by the lab in time. We;ll probably use mine laterthis week.

Wednesday, February 18, 2004 9:59 PM CST

Day +7

Up and down day today....a little on edge right now. The morning and afternoon went just fine for Coley. Same routine as the last few days. Unfortunately, around 8:00 as I walked into the room after donating platelets for her, Kristin was cleaning up from a vomiting episode. On top of that, she had a fever and rash. We aren't sure what's behind it yet. At around 10:30 they took an x-ray of her chest to check if there's anything going on in her lungs, like pneumonia. The Fellow just came in to say that the film does not look abnormal. She got a blood transfusion today and started G-CSF to kick start her white blood cell production. We hope it's just some type of reaction and all will be well tomorrow.

Kristin and I got to spend some time with Marissa and Travis today, so that was nice. I think they'll stay through tomorrow. Depends on how Coley does, I guess.

More hair is starting to fall out now. Can see it all over her pillow. Still no mouth sores.

Nicole says Happy Birthday to Mrs. Trucchi.

Tuesday, February 17, 2004 10:06 PM CST

Day +6

Another good day (on the outside at least) for Nicole. Spirits were good, labs still look good. WBC back down to zero, as expected. Hemoglobin and platelets are trending down per usual so we expect transfusions on both fronts over the next 2 days. No mouth sores yet, but I must say that I think the hair is on it's way out. More than a few strands came loose while brushing it this morning.

Changed the Attending Dr. today. Dr. Kernan is now on and she's a very competent Dr. Dr. Boulad served as resident under both Dr. Small and Kernan....so they must be good. She admitted today to a little bit of a concern, as I mentioned last nite, that her lack of symptoms MAY mean that the radiation/chemo doses were suboptimal. She was far from saying that she's leaning that way or pessimistic in any way, but any concern is troubling.

The next few milestones are now clear. First, we want her WBC count to start coming in consistently and grow. This will be the clear indication of engraftment of my stem cells. We expect to know that within the next 7-10 days. Once that happens, they'll test her blood to see what the percentage of her cells to my cells are. They want to see it be made up of 100% of my cells. Next at around Day +30, they will do another bone marrow aspiration. This is the biggie. It will show if there is any evidence of abnormal (leukemic) cells in her marrow. If there is...it's back to the drawing board. Our job now is to keep her healthy and infection free until that time.

Doc's also decided to continue to increase her G-tube feedings during the day, since she's tolerating it so well. The goal would be to get her off of the IV nutrition. You never want to stay on that for too long, because it can have damaging effects to your liver. We'll keep inching it up day by day and see how it goes.

So that's the medical update.

Kristin, Marissa, Travis, GG & Papa came into town today. So good to see the kids again. We'll try and do something special tomorrow with them for a while before they head back on Thurs.

Side note: Lil' miss Nicole is becoming quite the little cheater in some of our game playing. While playing "War" she's doing a lot more "screening" of the cards before flipping them over in order to sway the results. And in Candyland....now whenever someone but her gets one of those special cards that can move you a large amount of spaces forward, she'll be like, "wait, who's turn was that again?"

Yours ofcourse Coley!

Monday, February 16, 2004 9:40 PM CST

Day 5

Coley had yet another good day today. No issues to report on. All of her labs continue to look good, including her hemoglobin and platelet counts--so no transfusions today. They actually said that her WBC was at 0.1 today. But they said they didn't believe it, and expect to be 0 again tomorrow. We are very happy about the fact that Nicole is doing well and is pain free for now. We hope that it is not by any means any indication that the prescribed therapy is not being effective. Dr. Boulad came by tonite and expressed his optimism for effective treatment. We'll just hold onto that sentiment and assume the best. As we said before, at the drop of a hat these complications could come into play.

She is a complex case to be sure. Fanconi Anemcia is rare enough....to develop leukemia before the FA diagnosis and thus be stricken with the double whammy is even more rare. Plus she has the mosaic cells that complicates treatment (how much radiation and chemo is enough?). Put this all together and you end up with VERY few cases of this type worldwide. There are some that have done well on this same course, and again, the docs seem optomistic....so we are too.

Plus....she's so damn cute!

So, she had a very good and busy day. Lots of games played again (no luck for Zadie), Magician came to the room, Tammy came by for an hour or so to do painting, which she loves. She did all of her chores, had a few bites of a PB&J for dinner. She got tired kind of early and has been sacked out since around 7:30.

Mommy and Marissa & Travis will come to NYC tomorrow with GG & Papa to stay for a couple days (Mommy stays longer!!!). The kids wont see Coley, but I'm very excited to. It's been over 3 weeks since I've seen them!

Hoping for another good day tomorrow as we charge toward engraftment.

Sunday, February 15, 2004 10:33 PM CST

Day +4

Another good day today. It's Sunday, and the pace of the city is slow so I'll give you the thumbnail version:

- Tub & dressing change (of course completely managed by Coley)
- "Annie"
- Lunch (nothing for Coley, thank you)
- Connect 4 and Tic-tac-toe with Zadie, she wins all games.
- Tape Game
- Arts & Crafts with Tammy
- Santa Clause 2
- Santa Clause 2 (no kiddin, back to back)
- Puzzle w/Dad
- Dinner (nothing for Coley, thank you)
- Lights out.

Labs are good. No transfusions. WBC still 0.

Still miss Mommy!!!

Saturday, February 14, 2004 8:10 PM CST

Day 3

Have to start this journal entry by giving a shout out to Coley's #1 nurse, Yvette. We miss you and hope you're feeling better!! Hurry back.

What can we say...another day, another good day. Our good luck continues. All of her labs came back good from yesterday. No white blood cells yet, but we don't expect them for another week or so anyway. Platelets, good. Hemoglobin, good. Electrolytes, good. No transfusions today, hopefully none tomorrow either. Still a full head of hair....expect that to change sometime next week.

The volunteer people brought in "In theater" movies today for the kids. Nicole got to watch "Peter Pan". She wanted to watch it again, but they had to take it back from her for other kids to watch. She didn't like that too much. But a quick diversion to "Annie", and all was well again....whew!

Not a whole lot else to report. Honestly can't believe how well she's taking all of this confinement. She's been very easy to deal with and is not really climbing the walls or asking to go home. Really helps take the edge off the stress level....for now.

Miss you Mommy!!!!!!!!!!

Friday, February 13, 2004 8:26 PM CST

Day +2

I sit here happily searching for things to say. Coley had just a good 'ole comfortable day today. She did homework again..counting down to Valentine's Day. She also got a visit from one of the volunteers who is into "body awareness". They played together with these big flowing sheer scarves, pretending they were waves, rainbows and the sun. All while soothing sounds of the ocean was playing in the background. Good thing we're not into drugs man....that would have been the perfect time to spark up a big Doobie....dude! Coley was very into it....we'll keep an eye on her in her later years.

I went for a walk back to the Ronald McDonald House in the afternoon and Coley threw a big control play...throwing a tantrum and begging me to stay. Kristin said that for the next 40 mins she cried and screamed and would not acknowledge her. I knew she wasn't exagerating when I came back to find Coley with her arms crossed in anger and a scowl on her face.....SLEEPING!!

Anyhoooo...Coley started her TPN tonight. This is IV nutrition (vitamins, minerals, proteins, etc..). They don't think that she'll be able to sustain herself on G-Tube alone as the chemo/radiation effects kick in. They don't want to get behind the curve, so they're starting now. Drs. Levine & Levine agreed. The Doc's are really still very impressed that she is not showing any side effects as of yet. Like we've said before, we'll take every pain free day we can get. If her counts come in as quick as they think, the sores & stuff shouldn't last as long as they do with most kids because her immune system will kick in and be able to deal with them appropriately.

Oh a couple of other notes:
- Coley polished off a half a bag of Rainbow Goldfish today.
- Kristin almost got into two different fist fights...one with the cleaning people for not cleaning our floor. And one with a nurses aid who decided to cop an attitude with her over whether to take Coley's blood pressure on the leg vs. the arm. Kristin was right, the arm was best.

Hey, I guess there really was some good stuff to talk about today afterall. Freaky Friday.

Later, Dudes.

Thursday, February 12, 2004 8:46 PM CST

Day +1

First day after transplant and all is well so far. Doctors are really pleased at how well she is doing. Another day without fever, reaction, diarrhea, vomiting. We're really pleased that she hasn't developed mouth sores to date. We figure that's a ticking time bomb however and it's just a matter of time. We just wait for her to wake up....hope she's feeling well and fever free, and then pray it lasts the whole day. Worked so far, so we'll keep trying.

Dr. Small believes that Coley will start to have her white blood counts come up pretty quickly. We're very excited to hear her say that.....but still being cautiously optimistic. She think that because of her small size and the very good batch of cells (thank you, thank you) that she should respond fast.

Still winning the mind game war so far with respect to mouthcare, skin cream, etc. Pickin our spots, asking her to cooperate when she's in "a good place". She spent a lot of time on her feet today, walking in the room or filling out her chore chart. Taking advantage of the days when she feels well to exercise her legs and lungs.

Coley will wear a cardiac monitor for a 24 hr. period beginning tomorrow morning. A couple of days ago Dr. Small detected a slight abnormality in her rythm, no big deal. Follow up EKGs have not shown anything, and she suspects it was just an anomoly. But to make sure, she wants to get a long sample.

There was a surprise visit by the New York Giants today. (See picture) It wasn't Tiki Barber and Michael Strahan. Instead we got a reserve linebacker and punt returner (Wesley Mallard and Delvin Joyce respectively). Coley was ready for them with her Patriots shirt at the door. They couldn't come into the room, so we got a shot with them on the outside and us inside. The play room Nazi wouldn't let me take my own digital picture for 'policy reasons' (hmm..). Instead she tried to pacify us by giving us a nice polaroid. Not smart. When she left, we just took a digital picture of her polaroid and, wala! I'm thinking of e-mailing the digital shot to her just to tick her off.

Short of that, not too exciting. However, a boring day is a good day!

Wednesday, February 11, 2004 5:44 PM CST

Day 0 (Transplant Day)

OK I'll get right to it, at 4:07PM EST Dr. Small began the injection of my stem cells into Nicole. By 4:11, the job was complete. (See new pictures of the transplant). Dr. Small was VERY happy with the makeup of the stem cells. After processing/filtering, they ended up with a donation of about 17 million cells per Kg which is an excellent number. The entire donation came in a syringe with about 10 mls in it (or about 1/3 ounce). Just as important was that there was a very small amount of T-cells in the sample. If you remember from Bone Marrow Transplant-101, the fewer the amount of T-cells in the donation, the less the chance for graft-versus-host-disease. There will be a multiple choice at the end of our adventure, so I expect y'all to take notes.

Nicole spent the earlier part of the day preparing for her "Transplant Party". She wanted a Cinderella theme with crowns for all the Princes & Princesses (and Lambies). She made her own custom crown with her favorite volunteer Tammy and the Drs. made the rest for us. We even had the Cinderella movie blaring in the background during the infusion, with Dr. Small singing "Bibbity-boppity-boop" as she was administering....hope she doesn't get her license revoked for me writing this.

They monitored her closely for a couple of hours after by taking vital signs every 15 mins. or so to make sure she wasn't having adverse reactions. She's done well to date.

What's weird is that since the time Nicole got the injection of my cells, she somehow seems smarter, more agreeable and a bit cuter (if that's possible). Not sure what's behind all that.

We're very happy to have gone into this milestone in overall good health. Hopefully this will give her a good leg up in the next few weeks as we pray for engraftment and no GVHD--without major complications. We expect that within the next 12-15 days that her marrow will begin to produce normal white cells. We'll see very small WBC counts at first and hope for a nice escalation thereafter. Since Coley's such a quick study, I asked Dr. Small about a 1/2 hour after the transplant was complete if she could do a CBC to see if anything was brewing yet. She wasn't biting....though she got a good chuckle out of it.

Stay tuned...

Tuesday, February 10, 2004 9:17 PM CST

Day -1 (part 2) -- New pictures to illustrate today's activities..

Our second cut at 'The Day Before' went as planned, which is a victory in itself. No fevers, no signs of infection, no allergic reactions. Today's Bonus was that Coley didn't really have any diarrhea to speak of..AND, we actually started up her G-tube feeds again. She has tolerated it well today, albiet at only 10 ml per hour. Again, little victories.

She was in pretty good spirits all day. She did really well with her schoolwork with the hospital teacher Ann-Marie. For all you Tape Game fans out there, we snuck in a couple of rounds today to get some exercise. We were pleasantly interrupted by the "Musicians on Call" (see picture) who came by to sing a few diddys for Nicole. That was pretty cool...we'll look forward to that on Tuesdays now. No clowns today, but we're counting on them for tomorrow.

In preparation for her post transplant regimen, Coley got her 'chores' calendar today. It has all the thing she needs to do on a daily or multiple times a day basis. It includes weigh-in's, mouth care for her sores to prevent infection (4 times/day), central line dressing change, baths and activity fun. She gets stickers for everything she has to do. Oh how we hope this works! We tried her first sodium-bicarbonate rinse today on a trial basis. Wanted to give it a shot before she actually starts developing sores...which should be soon. She didn't like it very much, so we added a water 'chaser'. She did do a couple good rinses though. As always with Coley, it's all a mind game.

Docs also told me to be ready to give platelets for her over the next week or so. There's no doubt that she'll need platelet and red blood transfusions over the next several months. As the stem cell donor, I am also the best candidate for platelet donations. Love them needles!

So we're ready for tomorrow. The transplant will be a fairly anitclimactic event. It's going to be one of the doctors injecting a syringe full of my stem cells into Coley's central line. Should take all of about 4 minutes. There will probably be a lot of people around though, docs, nurses, lab people, etc. A lot of checks and balances to make double, double sure that they're giving her the right stuff. Although it's not much of a physical event, it represents a new beginning in many ways for Nicole and in that regard will be a very special moment.

And so will begin the very long road to recovery.

White count is down to 0!

Monday, February 9, 2004 7:04 PM CST

Day -1 (Resting & Harvesting Day)

Uneventful day today as expected. Nicole was comfortable all day without fever or allergic reactions of any kind. She had a tub with a dressing change (she's getting much better about doing the change now). She also did some homework with the teacher that they have here. Apparently she wanted to make sure that she knew where she was at in school, because the second that she sat by her bed side Nicole said "I don't know math, y'know". Coley's in control.

I missed most of the morning doing my stem cell harvest. A 4 hour ordeal where the take blood out of one arm and put it back in the other, while centrifuging out the white cells. They then send them to the lab to have the stem cells separated. Dr. Boulad was saying that he would like to have at least 10 million cells/Kg for the transplant because I'm not a perfect match for her. This will allow my cells to overwhelm her body and 'force' engraftment by sheer volume. Early estimates from the lab is that they were able to get around 30 million/Kg! Great news. (I'm doing an Arnold Schwarzenneger pose now....Grrrr!) Seriously though, the Doc's were very happy to have that many.

Coley received a companion lamb for her Lambie today from Dr. Small (the attending doc. on service). She aptly named the lamb, "Small". It's a girl lamb, cuz Dr. Small is a girl.

Small change in our schedule today. Seems the lab will be processing my stem cells tomorrow and doing the T-cell depletion (to prevent Graft versus Host Disease). This will put the actual transplant off until Wednesday. So tomorrow will be Day -1 all over again. Rest day for Nicole.

Thanks for keeping in touch. It helps to know that our friends and family are with us each step of the way.

..Team Coley

Sunday, February 8, 2004 8:03 PM CST

Day -2 (chemo is done!!)

A better day than yesterday. Nicole was bright and cheery all day long again today (and night...as I type this at 9:20 she's vigorously rooting the AFC in the Pro-Bowl). She's disgusted that Adam "Venabeery" isn't at the game, cuz he's the best! At 7:00 tonight, she ACTUALLY sprouted up and said, "Mom, I'm hungry..whadda they got here?" So now she's finishing up some nibbles on chicken fingers/fries.

Her diarrhea has progressed today, but it doesn't seem to phase her at all. She FLEW through her chemo today. No fevers, no reactions, no nuthin! Go on with your bad self Coley!!!

More games today. She dashed away any thoughts Zadie had of tic-tac-toe revenge by kickin' his butt once again today. She also created another artistic masterpiece with her favorite painting volunteer Tammy. Call me a nut, but I think some of her work actually has some pretty cool abstract qualitites to them. Maybe we'll contact the Guggenheim Museum while we're in the area to see what they think.

She's getting kinda scary, because she knows exactly what is going on each day...what each med. is, what it's for etc. She even gives herself all of her own meds that go in her G-tube. She continues to crack up the nurses and doctors here with her 'smart aleck' wit. Today's nurse was lamenting the fact that she couldn't be her primary nurse (watch out Yvette). Speaking of her primary nurse Yvette, she made a special trip down to see Coley today even though she was working on a different floor for the day...thanks!

She talked to her brother and sister on the phone today. Marissa is very upset with Coley's new haircut. She is very sad that Coley will be losing her hair. So we let Coley "comfort" her (ha!). In her unabashed manner, she tells her big sister, "hey, why are you so upset about my hair?? It doesn't bother me. Anyway, when I'm better it's gonna grow back". It was funny to hear her side of the conversation, because it was as if she was saying to her, "oh c'mon..get over it sister, geesh!". Not fair, cuz Marissa is really having a tough time and she is very concerned for Nicole. Travis....well we know about Travis.

Tomorrow is Rest Day heading into transplant day on Tuesday. I'll have my stem cells harvested sometime tomorrow in the Donor Lab. Good thing, with all this G-CSF medication they gave to invigorate my marrow production, I feel like I've got marrow coming out of my ears.....creates an achy feeling all around. Ya, like I should complain, right!

Coley's already got her day planned out for tomorrow. Tub, dressing change, clown visit, games, homework. Hope her rest day is as comfortable as today was for her.

As always, we'll let you know.

Saturday, February 7, 2004 8:31 PM CST

Day -3

Four days of chemo down, one to go. Check out the new pictures of the pretty girl in the photo album.

Today was Coley's best day yet during her treatment. I arrived at the room at 7:00 (just in time for my shots) to find her awake in her bed....and Mommy asleep in hers. Just as I gowned-up to come into the room, she sat up in her bed to vomit. She had a fever for about 2 hours after that (of 102 degrees)...right up until they began her first chemo drug of the day. She slept through most of that time thankfully. To our delight however, that was it for the day's events. Looks like we good another nice rabbit today. The rest of the day she was alert, playful, energetic and most importantly...pain free. She did have some diarrhea today as a result of the TBI and chemo. First indication that the cells in her GI tract are getting killed. Next up...the dreaded mouth sores.

Bubbie and Zadie came by and Coley proceeded to kick their butts in tic-tac-toe, connect four, old maid, war, UNO and go-fish. Guess we'll save Candyland and Chutes n Ladders for tomorrow.

After an afternoon nap (oh, Coley took one too) she remained in good spirits through an exhausting game of BINGO and some computer games. A little bit of a scare later in the night when she called to me and said, "Ah, Dad...the dressing came off of my line". Not a good thing, the LAST thing we need now with her counts so low is an infection. We quickly changed it up with the nurse and all is well again.

All in all, just a really good day. We'll cherish days like these in recognition that by this time next week we'll be in a completely different game.

til tomorrow..

Friday, February 6, 2004 7:27 PM CST

Day -4

Today was an up and down day. Coley was not very perky in the morning and looked very tired. She threw up a couple of times in the morning. The poor kid doesn't have anything in her gut, so she strains to get up mucus and bile. She's tough though (as we all know), she just sits up and lets it happen and then gets back to what she was doing. No real crying. Sometimes she even makes a point to keep her eyes fixed on the TV while throwing.

She was also very fevery during the morning hours and early afternoon....not sure exactly why. They had her on all types of anti-nausea meds and antibiotics all day. She also got a dose of adivan and morphine. They thought that was going to knock her out and make her sleep, but nope she battled through it. The narcotics made her loopy. At one point she asked us "why is lambie's leg moving"...an obvious illusion. Her speech was also very slurry for most of the afternoon....attitude undeterred however.

The good news is that she once again tolerated the Rabbit ATG. Her nurse Yvette made a special request to the Pharmacist to "give her a nice little rabbit today". I guess it worked. Hoping to continue the string of luck for the next two days and then give her a day of rest on Monday.

Coley got up and walked around the room today for a bit. No tape game today...instead we had beauty day. Mommy and Yvette gave her a haircut. Her long locks are gone now (sorry Gail B.). She now has bangs and short crop in the back. She still looks verrrrry cute...pictures to come soon. This will make the hair loss issue less ugly and traumatic.

Our friends at General Dynamics sent a very generous care package today. Coley spent the last couple of her awake hours playing with some of the gifts. Thanks everyone!!

White Blood Count is 200, down from 700 yesterday. Everything else in the labs looks ok for now.

Thursday, February 5, 2004 7:59 PM CST

Day -5

Coley did pretty well today all things considered. She had her first day of all three drugs. She took in the first two without a hitch (fludarabine and cytoxan), we even snuck in a bath and central line dressing change....of course completed by the boss herself. Just a little bit of nausea/vomit that they calmed with medication. Then we moved onto the Rabbit ATG. They started it at a slow rate (15 ml/hr) and she tolerated it well for about two and a half hours. Then she got the shakes, fevery and had a drop in her oxygen level. They stopped the med. immediately and worked to stabilize her with benadryl, oxygen, albuterol and tylenol. A bit unsettling to see her like that and have all the docs in the room monitoring her. After an hour or so of rest, they decided to restart the infusion at the original rate. In the end, we're glad they did because she ended up doing great with the slower rate and received the whole dosage.

Tomorrow we have the same regimen. Not out of the woods on the reaction to ATG. We could be in for a similar reaction as today as the levels of ATG that she builds up increases. We'll have to see.

Met with Dr. Boulad today for a few minutes today. He said we are tracking fine for now. We were reminded again however that the tough part is not yet upon us. That will be over the first 2-3 weeks after Day 0. Kind of a sobering thought.

Her white count was down to 700....heading to zero. She'll get platelets and blood transfusion later tonight.

I started my GCSF shots to 'stir up' my marrow for harvest. Two shots, twice a day for the next 5 days. The countdown to Day 0 is on.

Thanks again to all for all the encouraging messages and prayers. We read them daily to Coley and it really helps us get through this day by day.

Wednesday, February 4, 2004 9:21 PM CST

Nicole had a pretty good day today. She had a couple mild fevers, but was otherwise pretty comfortable all day. She still looks wiped with sunken eyes and a little bloated from all the fluids. Another milestone….she tolerated her first chemo drug, Fludarabine very well. She threw up once, but was treated with anti-nausea meds and did fine afterward. Fludarabine is the mildest of the three drugs she’ll be on for the next 4 days. The other two, Cytoxan and Rabbit ATG will be less friendly on her. She’ll get all three tomorrow, with Fludarabine and Cytoxan going in over about an hour each. Real anxious about the Rabbit ATG. It’s given to chase down and kill any of the T-cells that weren’t killed by radiation or the other drugs. It will go in over about 8-9 hours and because it’s a serum from a foreign species, the kids can have some pretty vicious reactions like high fever, nausea, hives, low blood pressure, etc. She’ll get pre-medicated with Tylenol and Benadryl, but it’s a pretty good bet that she’ll have a tough time with it. If she has a really bad time of it, they may switch to a less potent horse serum instead.

Her white blood count went way down from 15,500 to 2,000. We expect her to be at zero at the time of transplant. All her other labs look OK, so we’re tracking as expected to date…..although we’re still very much white-knuckled with each medication, each temperature and blood pressure check.

Around noon today, the public relations people came by with Dr. Boulad. They are updating the hospital web page and brochures and wanted some photos from the new pediatric ward. Dr. Boulad suggested that they photograph Coley. In his words, “they asked me to find a cute little child to photo, and I said I have the perfect girl”. The two of them mugged up together like crazy. She was a ham the whole session and they took a ton of shots of them. Can’t wait to see if they use some of the photos. We’ll keep you posted on that front.

Continuing the roller coaster analogy….we just went down the first hill, turned the corner and about to head into the loop-dee-loop.

Tuesday, February 3, 2004 8:40 PM CST

Well Coley made it through her radiation. We absolutely could not be more proud of her. She went to sleep after 11:15 last nite and did not sleep late...so our hopes that she would be alert and cooperative did not seem very likely. She pulled it off though, in a big way.

We got her up and bathed and then changed her central line dressing. She insisted on removing the entire dressing completely by herself. It took a while but millimeter by millimeter she managed to take it all off. I was afraid that that experience by itself would drain her before going into her TBI.

We tried to keep her happy and energized by joking a lot with her while waiting for them to call us in. Finally they called for her and she had to stand in this contraption that had a bicycle seat under her just for stabilization. Then it had a front shield against her chest up under her neck, a rear plate pressed against her back and two shoulder braces that kept her from moving laterally during the treatment. Her hands had to hang down at her side where she held onto these handlebars. She was locked into this position for almost an hour while they calibrated the lung protectors they manufactured with x-ray, and then through 20 minutes of intense radiation. This whole time she's in this tightly sealed room....all by herself. I'm telling you, this kid did not move an inch for all 20 mins of her front radiation and 20 mins of back side. All of the technicians, doctors and physicists that were watching her on the TV were dumbfounded. They said usually the kids are throwing up in the middle of the treatment or screaming to be let out. The absolutely could not believe that she took the whole treatment without asking for a break.

Kristin and I have a new hero....and her name is Coley.

She paid the price for being so brave however. After the procedure she complained really bad of a headache, and just as we got back up to the room she started to throw up. She is soooo wiped right now, the poor girl. To top it all off, she now has a fever that's giving her some chills. We think this is because her immune system is so low now that she is hyper-sensitive to getting infections. She'll be on countless rounds and types of antibiotics in the coming weeks to fight this stuff off. Just her luck too, the room we were staying in the last few nights has a broken thermostat, so the poor kid is boiling up in a room that is registering at 82 degrees. So we moved into a new, even more spacious room that has a functioning thermostat.

We are glad this day is over, and so incredibly proud of this little fighter. The days and weeks to come are going to be challenging to say the least. We're just praying that her body can stay as strong as her will to get her through.

Mom arrived today just in time for the TBI treatment...Coley was sooo happy to see her (as was Daddy). Good 'ole Dr. Tickles, aka Papa was nice enough to drive mommy down to see us. Papa helped us move into our new room too, thanks! Will make the days ahead a lot easier with her around. Her 5 day cycle of chemotherapy starts tomorrow. No rest for the weary.


...the rollercoaster from hell has just left the station...time to hang on like a son-of-a-gun.

Monday, February 2, 2004 10:07 PM CST

We're changing gears....the webpage has a new title.

Our last day as life as we once knew it. A rather uneventful one at that (at least in NY). Coley got up way too early for someone who was up watching the whole game. That set her up to be in quite the mood all day. Full range of attitudes from cooperative, loving, defiant, fresh and downright unbearable. Actually, come to think of it.....she was just being Coley. She created another umm, abstract painting today with the help of a play room volunteer. A much needed long nap after lunch, followed up by a couple of exhausting rounds of the Tape Game...dinner, movie, homework, movie and a late bed time. Praying she'll sleep in tomorrow to be cooperative for her TBI. She'll have to stand for about 40 mins....and if she's in a "mood", we're in trouble.

White count stayed at 17,000 today, so we are 'go' for total body irradiation (TBI) tomorrow. Transfused with red-blood today, even though she was not in dire need for it, they dont want to do it tomorrow in conjuction with the TBI. No platelets required today.

Mommy couldn't make it today, she'll hit the road tomorrow. Hoping Marissa doesn't try and super-glue herself to her leg in the middle of the night in a desparate act of protest. Travis is easy....toss a sippy-cup of chocolate milk into the house, and book it!

Up until now, believe it or not, it's been the 'easy' part. Tomorrow we throw ourselves somewhat blindly into the wisdom and talents of the doctors and the medicines and treatments they have devised for Coley. Thus begins the hard part. That, with the prayers of all our friends and family (which by the way are much more than we ever imagined) is what we are counting on to get us through this battle. Tomorrow begins what is expected to be a month long roller-coaster ride. We are hoping that it is as uneventful as possible and Coley doesn't continue her tradition of always falling prey to those things that 'rarely' happen. Just this once we'd like her (and the man upstairs) to stick to the gosh-darn game plan.

We'll let you know how it goes.

Saturday, January 17th, 10:00PM EST

Although we've been through so much over the last 3 weeks....make that the last 5 years, we are really only at the very beginning of this journey. After all we've been through with Nicole over the past 5 years, being told that she has Leukemia on Dec. 27th was a tremendous blow to our family. Your first thought is, 'o.k., this sucks....but there's about a 90 percent cure rate these days.'. Those thoughts were squashed when we were told it was AML and not ALL.

Knowing Coley, that didn't come as a surprise...nothing that's happened to her in her life has been in the 'norm'. We figured, time to climb another mountain. And that's when the big bomb got dropped.

Coley also suffers from Fanconi Anemia, a rare genetic disease that in rare cases (hey, whadda ya know Coley!!) is only diagnosed when one is found to develop AML. Most are diagnosed before leukemia develops and undergo a bone marrow transplant (BMT) to cure the bone marrow failure caused by FA...and thus heading off the leukemia. The curative path for AML is also a BMT which Coley is in the process for being matched via the National Marrow Donor Program. Typically however, patients are given an induction period of chemotherapy to insure that they are in remission (no leukemic cells detected) prior to receiving the BMT. Because Coley suffers from FA, she can not withstand the standard protocol for treating AML. The chemo that is designed to kill off the 'bad' cells, would also kill off her 'good' cells. Fanconi patients do not have the ability to repair their DNA from the radiation/chemo damage and regenerate more healthy cells. As a result, the treatment plan for FA patients with AML is very different and continuing to be refined through trials.

There are very few Fanconi patients in the world...less than 500 total! Very few have AML as Nicole does, so the results from the trials we are aware of are from only a handful of patients. There are basically 3 clinical centers of excellence for FA, Fairview Hospital in Minnesota, Cincinnatti Children's Hospital and the Memorial Sloan-Kettering Hospital in NY. Virtually everyone I've heard of that undergoes a BMT, does so at one of these facilities.

We are heading to the Sloan-Kettering on Tuesday the 20th to visit with Dr. Boulad. He has had some good success with his latest treatment plan with high risk FA patients, and our doctors have been conferring with him for some time now. They feel his latest protocol gives Coley the best chance of tolerating a BMT without developing graft versus host disease (GVHD)...where the donor cells and host cells throw down in a biological
Steel Cage Match. This is where you can develop anything from a mild skin rash to critical organ failure.

So it's off to NYC to gather more info and ask more questions. We're anxious to get to BMT because the quicker the better. She's in pretty good condition right now as far as her organ function goes, she hasn't had a large number of transfusions and her leukemia is staying in check. These are all positives as one goes into the BMT process. At the same time we're very scared of what the radiation/chemo conditioning and BMT has in store for her. The possibilities of outcome are many and range tremendously. One thing's for sure though....when you start, there's no turning back.

We just have to have trust in ourselves to make the right decisions...trust the gifted hands and minds of the doctors that have and will continue to treat her...and trust that Coley will have the spirit and strength to take this basket of lemons dropped in her lap and turn in into a big pitcher of lemonade. For those of you that know Coley, you know that she has the spunk and determination.

We appreciate all support and prayers we've received from all of our friends. We wouldn't have a chance of maintaining our sanity, hope and sense of normalcy if it weren't for all of your help. We are truly blessed to have such great family, friends and community to help us through this tremendously challenging time.

Look for an update soon when we get back from Dr. Boulad.

Todd, Kristin, Coley, Marissa & Travis.

Sunday, February 1, 2004 8:31 AM CST

Saturday was probably our most uneventful day to date, which is good. Coley went the whole day without getting a temperature. We hope that they have whatever she had going on under control. Need her to be 'clean' going into radiation on Tuesday. Her white blood count is still going up, which is not particularly good. It's 15 now and climbing. If it gets to be 20 before Tuesday, they'll start her on some drugs to kill off some of the cells. I think it's a pseudo-chemo drug of some sort, but non-toxic I guess. So long as it stays under 20, they'll let her go and let the radiation take care of it.

I only had to change her once for wetting thru her diaper. They use these very non-absorbant diapers here....get this, they're actually called "Tushies"...what's that all about?? Anyway, Kristin is bringing up some good old Pampers on Monday. We are using diapers because she is getting so much fluid, both IV and G-tube that she's constantly peeing. I know I can't trust her to tell me when she has to go, and even if she did, by the time I got that monstrosity of an IV pole unplugged and through the bathroom door, it would be too late. I tried another diaper on her that looked like an adult 'Depens' hoping it would be more absorbant. When I laid it out, she looked at me and said, "Holy Smokes Dad, that thing's huge!". We're not using them anymore.

Coley beat her nurse in 2 games of Chutes-n-ladders. She probably won't beat her Mom anymore though....we all know how good she is at chutes these days, haha. She also switched over from Disney.com to NickJr.com. She kicked Little Bill's butt for a couple of hours in tic-tac-toe. Not very gracefully either. Everytime she won, she'd be like "oh yeah Lil' Bill, you lose you lil' rascal".

Not a very exciting day obviously when all there is to talk about is Tushies and Little Bill. Hey, it is what it is.

Coley will be donning her Pats shirt from Uncle Mark and Auntie Donna today to root for the good guys.

out here...

Friday, January 30, 2004 9:11 PM CST

Hi from Memorial Sloan Kettering Cancer Center...

Sorry for not putting in a journal entry yesterday...a long and frustrating day. As most of you know by now, we never made it home yesterday. Just before Coley went in for her procedures, she had a 100 degree temp. We pretty much new we were in trouble then. Our hopes stayed up a little as she made her way through recovery and then through her blood transfusion after surgery without breaking a fever. In true Coley-like fashion, on her last temp reading after transfusion....BINGO, she spikes a temp. Unfortunately, my Dad was already here to take us back, so I went back to the McDonald House and packed up my things to move into the hospital and Kristin and my Dad went back home. Poor Coley was sooo disappointed. She really wanted to see her brother and sister. After a long day of procedures, she deserved a break. Marissa was heartbroken too, and Travis....well Travis just wanted to make sure he had his chocolate milk. Good news was that the spinal tap showed now evidence of the leukemia in her central nervous system....one for the good guys. I guess that makes us like 2 wins and 193 losses, but we're hoping for a big winning streak soon (we got a new coach!).

So we're here for the long haul now. Coley's first nite was interesting. Her temperature fluctuated up and down for most of the overnight hours. The Docs aren't sure that it is bacterial infection, or as a result of the disease. She was put on a couple different antibiotics to start. You should see the IV pole that she has. Holy smokes, it's got two separate pumps that each can infuse like 6 medications at once. Plus with her feeding pump, it looks like something out of a sci-fi movie. At 5:00AM she vomitted from a sound sleep. That scared her quite a bit, and then we had to get her all washed and changed up before we were able to get her back to sleep.

Friday was a pretty good day for the most part. She kept her temp down without the help of tylenol. Her eating is still really slow, but with the fevers we're not pushing her too much. We had to change the dressings on her G-tube and new central line today too. She was NOT happy about that. She had to do everything herself, telling her nurse several times, "I'll do it, don't touch me!". My buddy Steve (Muzz) Murray was here and got a first hand look at her controlling ways. He brought her some bottles of Nesquick chocolate milk (ha, ha Travis). She's really funny, during a dressing change she'll be crying and yelling at us, and then in the middle of her outburst she'd calmly ask the nurse a question. She'd be like, "Ouch!, Stop it, Stop it! Don't touch me!, That hurts!......where'd you get that smiley button?"

She had fun tonite working on the computer, playing Disney.com games. The hospital folks brought around the Treat-cart for her. She chose Doritos (Muzz and I selected undisclosed treats). After dinner and a movie (chicken nuggets were ignored in favor of the Doritos), it was off to bed.

Was told that from this point on her room is going to full isolation protocol. This means that whenever we're in the room with her, we need to wear gown, mask and gloves (including while you sleep). You leave the room, you toss everything away and then re-gown before reentering. I'm sure we'll get used to this too.

Finally, we heard that none of the cousins tested as a better match for Coley than I am. Sorry gang and thanks again for trying, hoping and being so brave during the blood draws. 2 and 194...

Catcha tomorrow

Wednesday, January 28, 2004 8:49 PM CST

Greeting to Coley's Cronies,

Not a lot to report as you know today as you know, but feel compelled to log in based on all the positive feedback from previous entries. If you can't have a little humor in your life, you get so caught up in thinking about what might be..or even think too much about what it is we are really up against. We know the real tough days are coming very soon, with not much cause for humor. Call it a defense mechanism, call it a form of denial...whatever it is, it keeps us sane--for now. Plus, the goal of writing something that might make Kayla spit her Coke out onto the screen keeps me going.

Coley spent some time today doing homework for Mrs. Blanchard, Mrs. Texiera, Mrs. Trucci & Mrs. Tilbe. She did her Peg the Hen book, read The Big Hit book and practiced writing her "P"s. She got a little confused though, because we were practicing in the dining room where they have a big screen TV. Obviously most of her focus was on the TV insetead of paper....so when I said, "Coley, c'mon do your P's"! She would shout back, "Dad, I don't have to go Pee"!

After a hearty late lunch (3 bites of pizza) and a little bit of "Annie", we all had a afternoon nap. At the RMDH tonight, she decorated "Blues Clues" cookies and played in her first Wednesday Nite BINGO game. Of course she won a game.

Here's today's "Coley-ism". After BINGO, she was playing around with another youngster who was wearing a mask. Showing her sensitive side, she asked him "What do you have goin' on?". With that embarassing moment, it was time for bed.

Early morning tomorrow, got to be at the Hospital at 7:00. She'll probably get transfused with platelets and possibly red-blood prior to her surgery. Hopefully, she tolerates everything OK from a pain perspective and doesn't get a fever. If so, we may be on our way home sometime in the afternoon. Can't wait to see the kids.

She'll be pretty inactive while home. Can't chance anything so close to transplant. Her ANC level (ability to fight infection) is very low these days, so unfortunately we'll limit outings and visits.

That's all for now.....

Tuesday, January 27, 2004 8:25 PM CST

Hello again from New Yaak,

It's 9:30 right now and apparently Coley's feeling just fine, because she is lying down in bed and won't stop flapping her gums!! We're watching the Bruins/Islanders game and she's shouting out "Let's go Boston, Let's go!". Not bad for a kid who didn't take a nap or eat a thing all day.

Good day today. Coley did great at her Echocardiogram and at the dentist. No crying, no cavities. Daddy had a lot of tests today too. EKG, passed. Chest X-ray, passed. Vein check, passed. Blood work, passed. Physical exam, passed. I'm a 'go' for donor. No crying either. No transfusions for her today, she held her platelet count pretty well from yesterday.

We saw the floor that Coley will be on during transplant. It's the 9th floor and is just recently completely renovated. The rooms are all nice, complete with wall mounted plasma TVsm (yeah baby!).

Coley's getting comfortable with Dr. Boulad I guess. At one point today we were all walking in the hall and she got ahead of us. Never shy, she turned and waved us along while looking the good doctor dead in the eye and yelling, "C'mon Pokey!!"

We have a pretty firm schedule now. Thursday we have the new central line put in, bone marrow aspiration, spinal tap and G-tube replacement. If all goes well on Thursday...no significant pain, infection, etc., we may go home for a few days either Thursday nite or Friday. We'd head back on Monday to be checked in for Radiation on Tuesday. Sure would be nice to watch the Superbowl from home.

At the Ronald McDonald House tonight, they brought in dinner and had a band play from a local Synagogue (fantastic intentions, no so fantastic music). Check out the new picture of Coley singing along....they singled her out to come up and play along. Her talents were on par to theirs!

We get a free day tomorrow. No hospital necessary. No idea what we'll do given the storm and all. Hey, I know....maybe we'll watch Annie!!

Thanks again to everyone for all the great guestbook entries and to all our great friends back in Raynham that continue to help tremendously with food and support. We truly are blessed to have so many pulling for Nicole. Thanks Judy W. for the cleaning!! Thanks again Muzz.

Monday, January 26, 2004 7:55 PM CST

Hello all,

First day in NYC today, wasn't too exciting but some interesting developments and a better understanding of the things to come and timeline. A little humor to start the day's journal. Kristin filled up two big JC Penny bags last night, 1 with trash and the other with dirty clothes. She made a point to make sure that I (the usual knucklehead in situations like this) knew which was which. Just as we were about to leave for the day, Kristin went to the trash chute and yep, you guessed it...threw away the clothes. Trash chute from the 10th floor....Holy Smokes!! The best was when I went down in the basement to put away Coley's medicine in the med-fridge, and I hear from the janitor's walkie-talkie the front-desk attendant saying, "Ah...hey Tony, I got a lady here who say's she just tossed her clothes down the trash chute. You mind having a look in the dumpster and bringing it up to the desk?" Welcome to NY! Anyway...

Started at 9:30 at the pediatric clinic (aka the Zoo). With all the sick kids running around, the germ nazi (that's Kristin) is operating at DEFCON-3. Free Krispy Kreme donuts every morning...yumm. Coley got her labs drawn and things were pretty stable, except for her platelet count.

We had a consult for what is called Total Body Irradiation (TBI). Its going to be a 1 day, single treatment for Nicole, with a pretty mild dose in comparison to what other, non-Fanconi kids would receive. She had a few chest x-rays and had several body measurements taken. They'll make plates to protect her lungs during radiation. The radiation-oncology doctors were very nice and feel pretty confident about the protocol they developed for Fanconi kids.

Met with Dr. Boulad (AKA, "the man!") and he gave us some great news. It turned out that I am a 4/6 match for marrow donor. Much better than the 3/6 we thought I was when we left last week. A much more manageable situation for getting Nicole to engraft! There's still an outside shot that one of her cousins will be a better match. To that end, Kayla, Matty, Jack, Addie and Mitch all got tested today for HLA match. Thanks so much guys for being so brave!!

Also found out that they will use peripheral stem cells for the marrow donor. That means that they will extract the blood just like you're donating platelets from your arm, and a machine extracts the stem cells and puts the rest back into your other arm. No procedure to put needles deep into the hip bone for marrow extraction. Advantage is that they get a lot more volume of cells from the peripheral blood, so that if Coley's cells put up a fight during the transplant, they can inundate her with my cells to the point where hers can no longer fight. There are a lot of other advantages that Dr. Boulad explained....plus, this will (literally) save my ass!

The timeline will go something like this. Radiation for 1 day, followed by 5 days of chemo, a day of rest and then the transplant. That's when all the nastiness starts, but we'll save that for another day. Between now and then she'll have to have another bone marrow biopsy, have her central line replaced with one that has three ports, get a spinal tap and replace her G-tube. I think hers is getting too small, cuz this little fatty is putting on so much weight (up to 33lbs now). Unless something happens unexpectedly, we won't be admitted until they start the TBI, which as it stands now looks like next Mon-Tue.

Tomorrow, more testing for Coley and me. She'll head to the dentist and get an echo as well as have more labs drawn. I'll get a consult at the bone marrow lab and get an EKG. I'm sure they'll find a way for us to stay busy.

We'll check in tomorrow.

Sunday, January 25, 2004 8:42 PM CST

We made it! We're here at the Ronald McDonald House on NYC. Room 1007. Check out our new pad at www.rmdh.org. Little hint....the pictures are a touch better than in real life. The trip was pretty smooth. After we scraped Marissa off of Kristin's leg in our driveway and finally got on our way, we made it down in about 3 hrs--only made 1 wrong turn.

It ain't home that's for sure, but it'll have to do. They are very nice here and the facilites are OK. The room itself is nothing more than your ordinary Holiday Inn (if that). They have a central dining area with about 4 separate kitchens hanging off them. Each kitchen has about 20 room numbers (families) assigned to them. We're in the Blue kitche, in case anyone was wondering. We each get 1 shelf of the fridge, 1 shelf of the freezer and 1 cabinet for food storage. Good thing we didn't bring Travis. I'd have to sub-let someone elses space to store all the chocolate milk. They have a pretty big play room with a dozen or so full size arcade games. This should keep Marissa, Travis and my older brother Mark very occupied when they come to visit. Poor Coley wasn't allowed to touch anything in there, thanks to her germ-freak mother. I'm afraid to sneeze these days for fear of getting a face full of Lysol afterward.

Coley was pretty spunky all day today. Thought she would sleep in the car, but she didn't. She watched movies again. Which ones where they again, hmmmm?......oh yeah, Annie and Sound of Music. Seen them so much lately, I actually caught myself saying the lines to myself from the driver's seat...pretty sick, huh.

Anyway, tomorrow the bell rings for round 1 of Coley's fight. We have a radiation consult at 10:00 and from there we don't know what's going to happen. Hopefully we will get settled into a room and get the lay of the hospital and Coley's floor. Still a lot of questions which we hope to get answered by mid week. The hospital will be our real home for the next few months, so we really hope we like it there. The RMDH is really just a place for one of us to crash. Coley's got all her comforts of home with her. Lamby (of course), all her pillows and new pillow case (thanks Deb, et al), movies, books, games. I just can't wait for her to get her hands around those nurses and start messin' with them. Maybe after she gets better, she'll run for Mayor. Imagine the press conferences with that voice?!

Well, off to bed now. FYI, we have a mailbox her at: 405 East 73rd Street, New York, NY 10021.

Keep the well wishes coming. We read every one without exception. They help in ways you cant imagine. I only wish we had the time to reply to them all. But it is important to know that each one means a lot to us. Kayla, Dani and Courtney...you guys try to keep your entries to a minimum--my heart can't take 'em.

Go Pats (and Sox..gotta say that down here)

Friday, January 23, 2004 11:45 PM EST

Couple of new pictures in the album...check 'em out (OK Juliann?) They only allow us to post 3 pictures at any one time, and I can't bring myself to take down the one with Coley chasing down Travis. Anyway....

Another long day in Boston... Started at the Jimmy Fun at 9:00 to let them get a peak at Coley's 'rash'. Looks like the dermatologist was right..just an irritated spot. Trek across the bridges over to Children's to get checked in for CAT scan. Coley did great, stayed straight as a soldier while they took pictures with the 'noisy camera'. We had an opportunity to watch Finding Nemo in the waiting room as the contrast was working it's way thru her belly. Hey, it beats Annie for the 14th time. We watched it on her portable DVD....to the Mother's Group in Raynham, this thing has been awesome!!! Finished the CAT scan at 12:45, so grabbed a bite to eat before going for Pulmonary function testing. Coley could only get a couple of her big blow-out-the-candles breaths into the hose to register on the computer...out of 20 tries. I asked if I could take a big exhale into the tube to register it as coming from her, just to mess with the Doc's. The technician wasn't having it, oh well.

Back to the Jimmy Fun at 2:45. Got platelets as expected and changed the dressing on her central line. She didn't like this and tried to coax us into delaying, but we won. Home around 6:30 to find out that we forgot her feeding pump at the clinic. I'll go back tomorrow to get it...just what I need. It was sad to leave there today knowing that we won't be back for a long time. That place is just the most incredibly caring, talented and warm place you can imagine. We want to thank her Doctor Christy Duncan and nurse Krista....you guys are wonderful!!

As expected (kind of), heard from NY today and they want us down there on Sunday to begin getting ready for transpant. So much to do, but we've been so busy. As departure time approaches, it's becoming all too real for us. The reality that we're leaving our other two kids for the better part of six months is soooo hard. Makes you want to make time stop for just a few more days so that we can spend some dedicated time with Marissa and Travis before going. It's also very scary knowing that we are taking her into this situation with no turning back. One thing's for sure, she is going to get a lot sicker before she gets better. Not sure if we're ready to deal. It's one thing to be home in that situation, another to be so far away from the other kids and fam/friends. Also we're told that the ward at Sloan does not allow kids under 12 to visit...no exceptions. This means that Marissa and Travis will not get to see her in person until she comes back home (maybe 6 mos). That's the toughest thing to think of right now. Marissa is going to be devastated. She's already so mad about this whole 'unfair thing that's happening to us'. We're working on setting up my laptop and computer at home with video so they can see each other via internet (thanks fellas). Dry ran it tonight and it seems to work pretty good. Hope she has a hi-speed line in her room or near by.

We know it's time, we can see it taking it's toll on Coley. She's more tired and achy the last few days. We just look at her and pray that when the time comes, she'll be strong enough to fight. I guess that's why as tough as it is to go, we know the quicker it happens, the stronger she'll be.

Hitting the sack now. Try to chime in tomorrow.

Thursday, January 22, 2004 8:47 PM CST

Another day, another adventure. A theme that will continue to be amplified as we get to NYC.

Talked to Dr. Boulad today. He says that based on the high blast count from yesterday's bone marrow biopsy, it's likely that we will go to Plan B, which is use me as the donor even though I'm not a perfect match. They just don't think that they have time to wait to screen, test and harvest the matched donors in the database. So frustating to know that there are more than 300 people out there that are a 6 of 6 match, that we can't get to quick enough. Right now I'm at least a 3 of 6 match, and based on further testing I could be as much as 4/6 or 5/6....pray for 5!! He's still waiting to hear back from his colleagues to try and get a concensus.

Meanwhile, we'll go to the 'Jimmy Fun' and Children's for some pre transplant testing tomorrow. Blood work, CAT scan, EKG, echo and pulmonary testing. Expect to be in NY on Tuesday for simulation/measurement for Total Body Irradiation....the prelude to the actual radiation/chemo treatment leading into the transplant. Oh yeah, today's adventure....

Kristin called me at noon to say that Nicole had a rash on her hips and that the Docs wanted her to come in for fear that it was an infection from yesterday's procedure....I bolt from work. If so, they would admit and treat with IV antibiotics to stay ahead of the game. After they looked at it, they scurried us away into an isolation room, fearing that it was an outbreak of shingles/chicken pox. Next they say that as a precaution they'll probably start a 7-day course of meds which would postpone the transplant by at least that long. We're thinking, "Could anything else possibly go wrong here??!!!". I mean, c'mon Chicken pox?? Thankfully, the dermatology doc's stepped in and said they thought it was just an irritation of some sort. So we got to go home until tomorrow AM, whew.

Saw cousin Taylor, auntie Kim and uncle Keith at the Jimmy Fun. Taylor was being brave by having her blood tested for Nicole. She did great....Thanks Taylor!!!

Watched Annie twice more, but thankfully sprinkled in a little bit of the Sound of Music. Wonder if she'd let me watch American Pie tomorrow?

Ciao for now.

Wednesday, January 21, 2004 10:00PM EST

Back to the Jimmy Fund today (actually, Coley calls it the Jimmy Fun 'cause of all the fun stuff to do there). --- check out the cool picture of Coley aboard our Angel Flight from yesterday --- No arts and crafts today, relegated to just DVDs in the transfusion room. Kristin's friends in the Raynham Mother's group all bought Coley the original "Annie" DVD, in addition to a portable 5" DVD player!!....Marissa is soooo jealous. Annie is hesr favorite movie. So....we watched it to Norwood airport, to the Sloan hospital, in the waiting room, on the way back from Sloan. What did she want to watch in the room today?......yep, Annie!!

Coley had to undergo another bone marrow aspiration today where they ram a big honker of a needle into her lower back and into her hip where we make marrow, and pull out a sample. They needed to do this to confirm the high leukemia cell count we got off of her finger-stick yesterday in NY. They put her under a sedative to make her woozy, but not asleep. When we got back into the procedure room, she was crying to the nurses and yelling at them...."That hurted"!! It was less of a hurting type of cry than it was a vigorous admonishment of the medical staff. In true Coley fashion, when we asked her how she was doing, she called Dr. Christy Duncan (the sweetest, most caring and gentle Dr. anyone could ask for) until she came over to the table and then growled..."She poked me!!"

We can laugh about it only because the medication they gave her made her not remember anything....and she's walking around fine and isn't that sore.

That's the funny part. The sobering part came later on when Dr. Duncan called us at home to let us know that the high numbers were confirmed. 79f cell volume was leukemic....not a good number at all.

Dr. Boulad is working the phones now to devise a treatment plan and we expect him to call us tomorrow. We figure he'll want us to come to NY very soon (like Friday or Monday). With still many questions unanswered like the donor, several Fanconi related issues, radiation/chemo plans, etc. it is an unsettling position right now for us because we know he's going to want to do the transplant asap. If we don't have firm accurate answers going into transplant, it will be very dicey and scary. We just need more time!

Coley's first cousins are being typed asap on a whim that they may match, seeing that Coley has a pretty common HLA type....worth a shot.

Will let you know how we make out tomorrow and what the near term plan is.

Kristin and I also want to let everyone know that we appreciate all of your entries in the guestbook. We read them every day and it lifts our spirits to know that our good friends and family are praying for Coley....keep 'em coming.

Todd & Kristin
Executive Vice Presidents of Team Coley, Inc.
(of course Coley is President and CEO)

Tuesday, January 20, 2004 11:00 PM EST

Well...we just got back from our NYC visit. We were fortunate to have been picked up on an Angel Flight from Norwood Airport to Teterboro Airport in NJ. It was a 4-seat, dual prop Piper Commanche, skillfully piloted by our good friend Lyndon. Coley was very excited to take the flight and looked so cute all strapped in her seat (picture to come soon). The flight was pretty smooth and it was pretty cool listening to all of the air traffic control commands and stuff. Lyndon was very patient as we were two and a half hours late for the return leg of the flight. Why were we so late you say? Well...therein lies the rub.

In our last entry, I mentioned how Coley's leukemia was staying in check which was good as we work to find a match. Well they drew more blood at the Sloan and found that her white blood cell blast count was drastically up even from her counts from yesterday. Not good! It puts a greater sense of urgency on a number of fronts. Coley has to have another bone marrow biopsy tomorrow to validate the blast counts -- poor kid, she'll have a sore bum for a while again. If they are really high, chances are that Dr. Boulad would want to admit her into the Sloan-Kettering THIS WEEK for the long haul.

We're still not sure where we stand on the donor front. I'll push for more answers tomorrow and asked Dr. Boulad to throw his weight around as well. We're also still waiting for a definitive Fanconi Anemia diagnosis. We met with Dr. Arlene Auerback from the Rockerfeller Institute. She's one of the leading researchers for Fanconi (if I recall, she developed the standard blood test that is now used for diagnosis) and keeper of the Fanconi Anemia registry. Coley's even got her stumped! Most of her cells do not have 'classic' Fanconi traits when subjected to the chromosonal breakage test....yet some do. She took more blood work and is continuing to push for quick lab results on Coley's behalf. Want to hear more confusing stuff....ok..

It appears that her cells have what they call a Mosaic characteristic. This means that some of the leukemia cells are 'normal' and some are Fanconi-like (i.e. break easy). It makes the pre BMT regimen much more tricky, because if all of the leukemia cells are 'normal' then they know the patient can sustain a high level of radiation/chemo to kill them. If they are all or great majority Fanconi-like, then they can comfortably reduce the dosage and know that the easily killed off Fanconi leukemia cells will be taken care of. In either case, you have a good shot of getting rid of all of the leukemia prior to BMT. If there's a mixture of both cells then you run the risk of not giving enough chemo/radiation to effectively rid her of leukemia which will lead to relapse or giving her too much to handle (i.e a fatal recipe). Dr. Boulad is looking for Dr. Auerbach to give him more info on her bloodwork so that he can make informed decisions for when the time comes. He told us he will consult with experts in Minn., Cincinnati, Boston and Paris on this front.

Bottom line is that we have to get her to BMT as soon as possible. Dr. Boulad told us that if we choose to have it done at Sloan, then we should expect a 6 month stay! He says that other than some of the technical things his team does in terms of prepping the patient and the donor marrow, it is their process for managing the post-transplant period that contributes to their success. They dilegently and constantly look for indicators of complications and head them off at the pass and they keep the patients there longer to make sure they fully engraft and are truly ready to go home.

So..
Need a BMT soonest --> no preferred donor yet.

Need to know about Mosaicism and definitive Fanconi dx --> nothing yet, but play large in the treatment plan.

Will find out how bad the Leukemia is getting tomorrow and hope that it doesn't force into making pre-mature decisions.

More than likely we're heading to Sloan...and probably pretty soon.

Dr. Boulad is a great guy.
NYC is crazy.
Coley is a trooper.
Lyndon is a good pilot....
..and I'm tired.

Check back soon.

Saturday, January 17th, 10:00PM EST

Although we've been through so much over the last 3 weeks....make that the last 5 years, we are really only at the very beginning of this journey. After all we've been through with Nicole over the past 5 years, being told that she has Leukemia on Dec. 27th was a tremendous blow to our family. Your first thought is, 'o.k., this sucks....but there's about a 90 percent cure rate these days.'. Those thoughts were squashed when we were told it was AML and not ALL.

Knowing Coley, that didn't come as a surprise...nothing that's happened to her in her life has been in the 'norm'. We figured, time to climb another mountain. And that's when the big bomb got dropped.

Coley also suffers from Fanconi Anemia, a rare genetic disease that in rare cases (hey, whadda ya know Coley!!) is only diagnosed when one is found to develop AML. Most are diagnosed before leukemia develops and undergo a bone marrow transplant (BMT) to cure the bone marrow failure caused by FA...and thus heading off the leukemia. The curative path for AML is also a BMT which Coley is in the process for being matched via the National Marrow Donor Program. Typically however, patients are given an induction period of chemotherapy to insure that they are in remission (no leukemic cells detected) prior to receiving the BMT. Because Coley suffers from FA, she can not withstand the standard protocol for treating AML. The chemo that is designed to kill off the 'bad' cells, would also kill off her 'good' cells. Fanconi patients do not have the ability to repair their DNA from the radiation/chemo damage and regenerate more healthy cells. As a result, the treatment plan for FA patients with AML is very different and continuing to be refined through trials.

There are very few Fanconi patients in the world...less than 500 total! Very few have AML as Nicole does, so the results from the trials we are aware of are from only a handful of patients. There are basically 3 clinical centers of excellence for FA, Fairview Hospital in Minnesota, Cincinnatti Children's Hospital and the Memorial Sloan-Kettering Hospital in NY. Virtually everyone I've heard of that undergoes a BMT, does so at one of these facilities.

We are heading to the Sloan-Kettering on Tuesday the 20th to visit with Dr. Boulad. He has had some good success with his latest treatment plan with high risk FA patients, and our doctors have been conferring with him for some time now. They feel his latest protocol gives Coley the best chance of tolerating a BMT without developing graft versus host disease (GVHD)...where the donor cells and host cells throw down in a biological
Steel Cage Match. This is where you can develop anything from a mild skin rash to critical organ failure.

So it's off to NYC to gather more info and ask more questions. We're anxious to get to BMT because the quicker the better. She's in pretty good condition right now as far as her organ function goes, she hasn't had a large number of transfusions and her leukemia is staying in check. These are all positives as one goes into the BMT process. At the same time we're very scared of what the radiation/chemo conditioning and BMT has in store for her. The possibilities of outcome are many and range tremendously. One thing's for sure though....when you start, there's no turning back.

We just have to have trust in ourselves to make the right decisions...trust the gifted hands and minds of the doctors that have and will continue to treat her...and trust that Coley will have the spirit and strength to take this basket of lemons dropped in her lap and turn in into a big pitcher of lemonade. For those of you that know Coley, you know that she has the spunk and determination.

We appreciate all support and prayers we've received from all of our friends. We wouldn't have a chance of maintaining our sanity, hope and sense of normalcy if it weren't for all of your help. We are truly blessed to have such great family, friends and community to help us through this tremendously challenging time.

Look for an update soon when we get back from Dr. Boulad.

Todd, Kristin, Coley, Marissa & Travis.

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