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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 90 f 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 t