History

Monday, September 26, 2011 4:54 PM CDT

Noelle has been gone from our lives for 4 years now. It is hard to believe that so much time has gone by. However, I am so glad to have had four years of healing. This fall has been the first time the three of us have started the school year without tension and stress. Four years of grief was horrific. Not to say that we do not experience grief in our lives but it is not a daily thing like it has been.

One of the things that has helped us heal is our charity. We are proud to say that Noelle's Treasure Box will soon become "Noelle's Treasure Box, Inc." All the paperwork has been mailed away to Madison and we will soon open a bank account under this name.

Thank you to all of you who have chosen a day to honor an event or someone in your life. Your annual donation has helped us buy small toys for children suffering from cancer and blood diseases or who have had a bone marrow or cord blood transplant. It has also allowed us to give our second $1000 scholarship to a high school student affected by cancer. We are overjoyed that Noelle's memory can live on in this small way.

Thank you for your continued support of our family. We continue to be overwhelmed with the kindness that continues to surround us always.

The Naylors

Friday, April 1, 2011

Happy "7th" Birthday, Noelle!

We continue to miss the presence of you in our daily lives. We think about what it would be like to have you sitting at the dinner table, playing balloon swords, sleeping in bunk beds with your sister, dropping you off at school, etc, etc. We could go on and on. You were such an importatnt part of our lives and we miss you tremendously.

We will love you forever.

Friday, December 31, 2010 3:30 PM CST

Another year has come and gone and we are still standing. It is a surreal thing to survive your child in life. Survival is a tricky thing that has sent us on many paths in life. Our path this year has lead us to the adoption of our son, John Elliot Naylor. He has helped us to heal in more ways than we can imagine. We see our Noelle in him and know in our hearts that he is a gift to us from her.

This Christmas, Dave picked him up from daycare and he told a "knock knock" joke to Dave that Noelle made up and told. This two year old boy has never even heard a knock-knock joke and then to tell the exact one Noelle used to tell was amazing. She definitely sent us a sign that we so needed.

Our new life motto:

"Do not go where the path may lead; go instead where there is no path and leave a trail." Emerson

Friday, September 10, 2010 8:10 AM CDT

September is a month filled with happy and sad events. Sometimes it is difficult to sort those emotions out in your head and in your heart.

On the good notes: We celebrated Tessa's 9th birthday with her friends at Comedy Sportz. Everyone laughed and had so much fun. Dave surprised me with Lady Gaga tickets for my birthday which was an awesome surprise. My sister, Erin will celebrate her anniversary this month also which is filled with many wonderful memories. My favorite memory being Tessa and Noelle walking down the aisle and Noelle looking back at me saying "I did it" when she made it to the front. We will also be taking our last class to finish up our adoption requirements for Johnny. We are blessed to have him in our lives.

On the sad note: Noelle's struggles began and ended in September. We remember those days with pain in our hearts and tears in our eyes. We usually are just plain crabby and take it out on each other. This is an awful thing to do but happens anyways. Just being truthful....

Please say a special prayer for our sweet girl on September 17th, the night we started our struggle at the ER, and September 27th, the afternoon her life ended.

Wednesday, March 31, 2010 9:34 PM CDT

At 5:57am on April 1st our sweet Noelle was born. I have been remembering every detail of that night/day. Everyone thought we were playing an April Fools Day joke on them when we called to say that she had arrived. I was due to be induced at 6am of that day. Of course, Noelle never played by the rules and decided to surprise us all. She had a head full of dark, dark brown hair and a little round face. She was amazing and we all fell in love with her immediately. I thought Tessa would suffer some jealousy but I think she loved her the most.

Noelle would have been six years old this birthday. It is hard to imagine what our lives would have been like with her here. We know that it would have been a happy life but oh, so different. We bought her a Zhu Zhu pet for her birthday this year....it is all the rage among Kindergarteners I am told. It is all wrapped and ready for its trip to Children's Hospital with all the other toys donated in her honor. It is a nice way to remember her spirit and to help it live on a little. We also will decide which Senior will receive the First Annual Noelle's Treasure Box $1000 scholarship. It makes us smile to see all the good that our little girl has helped create.

Thank you for always helping to keep Noelle's spirit alive and our hopes up.

Tonya, Dave and Tessa

Friday, January 22, 2010 12:26 AM CST

I was looking back to our messages from January 2006. My our lives were filled with ups and downs during that time. Even though those days have been over for awhile, we continue to experience those ups and downs from time to time. Grief and grieving are 2 complex things that never, ever go away. Time doesn't heal; it just becomes different. When something goes good or bad, we continue to imagine what our lives would be like with Noelle here. As I drive in the car and listen to Johnny and Tessa laughing, I look in the mirror and imagine her right there in the middle laughing her belly laugh the loudest of the three. When I walk to Tessa and my Brownie meeting past the Kindergarten coat hooks, I imagine her name there with the rest. When Tessa is lonely and decides to do an alone activity, I imagine Noelle there asking her to play Barbies, Polly Pockets, Little Ponies. I can still hear their laughter through the monitor as I washed the kitchen floors each day.

Anyways, we are still here and our lives are pretty good despite everything. We try our best to be good humans and help others. We try to be nice to each other and not take our grief out on the ones we love the most. It isn't easy but like I said to my dad----acknowledge the feelings, feel the feelings and then move on for the day. It is all any of us can do.

T

Wednesday, December 2, 2009 9:37 AM CST

It seems the holiday season is upon us already. We have been busy helping three families in Kenosha who have children struggling with cancer through Noelle's Treasure Box. It gives us great joy to bring some good out of our tragedy. We know Noelle would want this and be proud of us.

We are also busy finishing up the paperwork to start a $1000 scholarship for Kenosha Unified students who have experienced cancer directly or within their immediate family. We hope to give out one of these scholarships in the spring.

Dave is scheduled to bring 250-300 toys to the oncology clinic, bone marrow clinic and in-patient HOT unit before Christmas. It is amazing what a little toy, i-tunes gift card, book, journal can do for a child's mood. Positive thoughts are so important in the healing process and in order to survive cancer. The research I have read supports this theory. We saw how happy Tessa and Noelle were with a little toy or book to distract them from the days stress.

Thank you so much for all of your donations. 100 percent of everything goes directly to helping children. We haven't taken a paperwork or processing fee (smiles). Eight of Dave's students came over on Sunday and helped us inventory, sort and label everything. It was a tremendous help and we were so thankful for the assistance. Now we know what we need to purchase for future drop-offs.

Have a wonderful holiday and please continue to remember all the children and families struggling with cancer. It is so difficult to spend the holidays in the hospital or sick at home.

The Naylors

Tuesday, November 17, 2009 8:31 PM CST

Life goes on around these parts. Thanksgiving and Christmas are coming which is exciting and sad at the same time.

We are continually helping other families through Noelle's Treasure Box which allows us to cope a little better with her loss more and more each day. Noelle has taught us how important it is to be kind and generous to others and we feel that we have learned this lesson. We know that others have learned this lesson also.

As you prepare for Thanksgiving and Christmas, please remember those many families out there struggling to keep someone in their life alive for one more day. It is one of the most difficult roads to lead and the only way to do it is with the support and friendship of others.

Tuesday, November 17, 2009 8:31 PM CST

Saturday, November 7, 2009 11:57 AM CST

Hello All!

Sorry to delay the updates to one time a month, but a lot has been going on in Naylorville!

First, we are pursuing adoption for Johnny. His parents have a court date to talk about TPR in December. We are waiting for the results of that court date, as it will let us know if he can be adopted. I can't believe it, but we have had him for 13 months now! He is growing big. I am loving it because he LOVES soccer! How about that...music to my ears and eyes. He has been sick a bunch though. Tonya and he did a sleep study last night, as he wakes up many times in the night. His tonsils are huge...maybe that is the cause, who knows!

Tessa is growing big too! She is 8. Wow! She is gonna be taller then me soon...hahahaha. Right now, she is enjoying school at St. Mary's Elementary in second grade. She is still BFF with Lindsay. Our families have been able to get to know each other better and we help each other with carpooling and stuff. The Pecks are great! Tessa is most happy doing art right now! She has a great private art tutor that is helping her with her talent in art. Ms. VanBlarcom, who was an art teacher of the year, is her tutor. We can't thank her enough, as Tessa loves loves loves her. Her art is phenomenal and she had an art piece at the Andersen Art Center in Kenosha.

Tonya and Dave are busy adjusting back to school. I have a new job at Harborside, that keeps me really busy. I make sure I get back to Nash though! Last night, Nash had its' fall festival. I run a community service club at Harborside called HARBORSIDE BY SIDE! We furnished many of the Nash Volunteers for the Fall Festival. From our small High School I brought 40 volunteers. AWESOME is all I can say. We had 40 volunteers there! That is nearly 15f our whole school. I love working with these students and seeing all the good we can do together.

Our charity is as busy as ever. We now support 3 clinics at Children's! I am bringing Harborside Students to drop off the toys. They also have helped us separate and organize toys. Sadly, there are 3 kids in KUSD that we are getting set to help too. Little ones with cancer...cancer sucks! We are going to help with gift cards, toys, comfort items, etc.

Well, Tonya is asleep, so she can't update. She is tired from the sleep study and I am watching the kids. So, I will let her update at a later time.

I promise pictures of our family to come. You can see my new hair cut!

Oh, by the way, we just got back from DC. Tessa and I had never been there, so Tessa, Tonya and I went over Teacher's Convention. All I can say is AWESOME again! I will put some pictures from the trip up!

Many of the Lord's Blessings to you all,
Dave

Monday, October 5, 2009 7:03 AM CDT

Two years comes and goes. We have had some good times, okay times and some down right awful times. Thank you to everyone who continues to support us along this journey.
Last year, we had a remembrance party for Noelle with family and firends. Two years ago, we were just starting the grieving process. I literally think we were in the shock and denial phase of grieving for a whole year.
If it were three years ago, we would be getting ready to go to Disney and start the process of transplant #2. If it were four years ago, we would be finishing up with transplant #1. If it were five years ago, we would be just starting the whole chemo process. If it were six years ago, I would be just pregnant with Noelle and our lives would be innocent and filled with hope.

This year, we just remembered our brave girl in our own ways. It is still painful and always will be. I was blessed to hear that there was a rainbow (unfortunately, we missed it) in the sky around the same time as the one that happened the hour Noelle died. It continues to give us hope that their is a greater thing out their for all of us.

Tomorrow, Dave will deliver over 300 gifts to Children's Hospital of WI for bone marrow clinic, oncology clinic and the in-patient unit. It will be a GOOD day.

Tonya, Dave and Tessa

Monday, August 10, 2009 0:28 AM CDT

Hello All,

Where did the summer go? Wow!!! Today, I wanted to use the journal to talk about something great that came out of our loss and the incredible gift that was Noelle! Shortly after Noelle died, Tonya got the idea to have a birthday party for Noelle and donate all the gifts from the party to kids at Children's who were receiving treatment in the oncology or transplant units. The joy of providing these gifts was overwhelming...out of our hurt could come love and compassion.

So, we did it again... This time, we got many more toys bringing nearly 100. Noelle loved when she got gifts out of the "Treasure Box" from Children's Hospital. So, our family discussed it and decided to start a little, home grown charity called NOELLE's TREASURE BOX.

I am happy to say that as of today, we have given well over 2000 toys to kids fighting cancer and receiving transplants. In addition, we have given nearly $1500 to families in need in the form of gift cards or cash donations.

We think Noelle would be proud.

Now...for the reason for this post... We have done very well with toy drives and other charity pushes for Noelle's Treasure Box. However, we would like to expand. Yes, I said expand. Noelle also received a Make-a-Wish trip and we would like to start a new part of our charity, one that helps local Kenosha kids experience some type of adventure. Whether it be sponsoring a field trip, a fun day at the amusement park or an Outward Bound trip, we would like to help.

In order to do this...we have had to be creative. Well, we are starting a unique charity push. We are doing a recurrent, sponsor one day per year for kids charity drive.

Here is how it works... We have split the calendar into 365 days. We are looking for 365 sponsors to each take one day a year and sponsor the Treasure Box. To sponsor that day, you must agree to donate between 25 and 100 dollars...no more, no less. If we can get 365 sponsors, we will meet our needs to continue the toy donations and to expand our home charity.

So, what am I asking?

Please sponsor one of our 365 days. What you need to do, if you can help...is to pick a day of significance to you and your family and donate to Noelle's Treasure Box on that day each year.

How? Well, to join this unique charity, please send Dave an email at naylorda@yahoo.com . In the email, please list the subject as Noelle's Treasure Box. In the text please list the day you will sponsor and the recurring amount you are willing to send each year. We are collecting all of 2009 in August and Sep. So, if you are going to sponsor, then we will need your amount this year. In following years, we will send you a letter from the Charity reminding you of your sponsor day and amount about a week before that month starts. By sending me the email, I will give you full instructions and save your date for you!

We appreciate all you have done for us and our family! Please consider helping us keep Noelle's memory alive in a powerful and proactive way.

Thanks so much,
Dave

Sunday, July 19, 2009 9:16 PM CDT

Summer is going well for the Naylor's this year for the most part. It is amazing how you can place one foot in front of the other and time keeps going.

For the most part, we have tried to spend time together. Somehow, when you are grieving you begin to spend time isolated and alone rather than with each other. We have really had to work hard to get back to the simpler times that we shared when Noelle was alive. We have begun to enjoy the days and times naturally again rather than forcing it.

Time has helped heal our wounds a little more than we would have thought. We also realize that trust and the belief that Noelle is okay has helped. It still hurts like hell at times but it is not every minute of every day.

Today, I was getting lunch together and heard laughter. I looked up to see Tessa and Johnny goofing around together. It was a simple scene that warmed my heart. It was good to see Tessa acting like a typical child again. The last time I saw her acting like that was with Noelle. It has been a long time, over two years. I have waited to hear that natural, unforced happiness in her. I thought that happiness was gone from our lives forever.

Monday, July 6, 2009 9:43 PM CDT

Miss you and love you sweet girl!

Been thinking about you a lot lately with the fireworks and swimming. We made a lot of memories the summer before your second transplant. Each day was a present to me, daddy and Tessa with all the smiles and laughter. I wish you were here to play and swim with Tessa. She is surviving like all of us but misses you deeply.

Sunday, May 31, 2009 11:25 PM CDT

Hello All,

Wow! The School year has once again flown by us all.

Things here are going ok. Tessa is enjoying finishing up the year and really looking forward to the summer. She is doing better in soccer and had a great game today nearly scoring a couple of times. She is developing a nice kick and has been more aggressive after the ball.

Dave is having fun coaching Tessa. The team has shown improvements and has been keeping him on his toes. Definatley looking forward to summer though! Woot!

Tonya is looking forward to time off and to many projects in and around the house. She has a big list of summer to dos. She is very excited, as is Dave, for lots of summer travel.

Johnny is growing, growing, growing. He is pushing out two more teeth (already has two bottom ones) and is trying to walk. He can stand and cruise the furniture, but is definately getting his walking legs! Soon soon soon.... Then we will really be on alert.

Noelle...miss ya darling. Keep sending your healing sunrays down upon us all!

Dave

Thursday, May 7, 2009 0:17 AM CDT

Hello All,

Figured it has been way too long for an update....so here goes.

Tonya...is working hard on raising little Johnny and Tessa too. She is working full time in KUSD and is very active in our homespun charity...Noelle's Treasure Box. Looking forward to the summer...and travel.

Tessa...is busy finishing up 1st grade...wow!!! She has developed a very strong passion for art...and her skill matches it. She is going to get private lessons from the PTA Teacher of the year...Ms. VanBlarcom, the art teacher at Dave's School. She is looking forward to that more then anything. Ms. VB says Tessa has great art skills and wants us to really help her develop that into a lifelong talent.

Johnny...is standing and beginning to try to walk. He is 9 months old already...can you believe it? He is also vocalizing and playing tons! He is a happy little fellar.

Dave...is finishing up his first year as the Dean of Students at Nash. He loves his job and the nice mix of responsibility and direct student contact. He is also contemplating going to school to be a Principal. Gotta get in a program first...smiles.

Well,

God Bless,
The Naylors

Tuesday, March 31, 2009 11:35 PM CDT

When a child is born, whether intended or not, we create a scrapbook in our minds, our hearts and our souls, dedicated to just him or her. We segregate that part of our being, just for who they are and what they will become. We fill their pages with memories, snapshots, moments captured in their fragile life and store them to remind us of what we helped to create. We celebrate in these pictures, we cry, we remember the good and the bad, but we always remember.

Each of our scrapbooks also holds future snapshots, not yet captured but yet so very real. It holds that fear and joy of first days at school, seeing them walk down the aisle at their graduation...their wedding...seeing them hold up that championship trophy, that college diploma, helping them buy and settle their new house, build their family and take their place as successful, wonderful adults. In those pictures, in those memories, we see how their cute and chubby cheeks will grow into beautiful smiles. We see how their childish curiousity turns into a zest for knowledge and their quest for a new world. We see how their reliance on us blossoms to steadfast confidence and maturity. We see all they can and will become. These memories, as they shouldn't be, are unscathed by reality, untouched by our true existence. And although we know those memories have not come and can change, we hold them just as tight as those that have passed.

And so, the memories of "what could be" are what I think of tonight. I think of the wonderful day Noelle would have had tomorrow on her 5th birthday. I think of the wonderment she would have as we enroll her in Kindergarten and the friends she would make, the things she would learn, the fun she would have. I think of how much more we would cry at her first day then her and how proud we would be at all she would do this year. And although I know our reality is much different, I think of "what could have been."

Noelle, tomorrow is your 5th birthday. And as we hold back tears, and as we try to fight back a "sorry for ourselves feeling," we open the book of you and we each remember you in our own snapshots.

Not a day goes by that we do not think of you, think of all your were and all you could have been. Not a day goes by that we don't thank God for the chance to have been your parents, your sister, your friends. Not a day goes by that we aren't grateful that we held an Angel in our arms.

To you, on your special day, we say Happy Birthday! And, mostly we say WE LOVE YOU.

Until God blesses our reunion with you,
Faithfully your family!
Dad, Mom and Tessa

Sunday, March 15, 2009 6:57 PM CDT

I have been bugged by so many, I thought I would leave a quick message to let you know we are all fine.

We are all anxiously awaiting spring and received some nicer weather this weekend (50's and 60's). It is much needed after the long, long winter. We have been busy with work, taking care of Tessa and Jonathan, spending some time together, and living life. Tessa just completed an art class called Self-Portrait Puppets which she loved. Her teacher pulled Dave aside to tell him that it is a really skill for her and she needs to get into more art classes. Jonathan just started crawling and has succeeded in sleeping through the night for 5 straight nights (a new record). Having a new baby in the house has kept us very busy but he is settling in and seems to have a new calm.

Now that the snow has melted, Dave and I are thinking of summer and what house projects are in need of completion.

April 1st will be Noelle's Fifth Birthday. It is unimaginable and brings tears to my eyes to think of it. I still remember her first birthday so clearly.

Take care----

T

Friday, February 27, 2009 10:20 AM CST

Today is an anniversary ----the 27th is a day that comes and goes. Sometimes, I take time to remember what happened that dreaded September 27th and sometimes the 27th passes without me consciously realizing it. Today is a day that I am truly feeling my daughter's loss. Life has changed so much and I am wishing right now that it was the same and she were here.

Wednesday, February 4, 2009 9:41 PM CST

Noelle's legacy lives on again because of Dave. He organized a blood drive at his school in Noelle's name. Because of all the work he did, over 198 people will receive a blood transfusion. Tessa and I are proud of him for all he does at work and at home.

Friday, January 30, 2009 2:51 PM CST

When we started Noelle's Treasure Box, we had no idea that we would get such an outpouring of support. We have collected over 1500 toys for Children's Hospital of Wisconsin's Bone Marrow Clinic. We have gotten so many toys that we are going to pass some along to the oncology clinic also. We are amazed and positively overwhelmed at the good that can be done in this world with just a tiny effort. So many patients will now have a little of that positive in their day that is filled with so much dread and loss. On a selfish note, Noelle's legacy will live on a little while more.

Thursday, January 1, 2009 8:38 AM CST

Last night, many of us began the new year with our family and friends. It was a night of happiness for many people. I woke up this morning thinking about 2008 and what it meant to Tessa, Dave and myself.

It was a year of heartache and struggle for us. We had to learn to recover somewhat from a great tragedy and continue to live and support each other. We lived most of the year in shock and disbelief that our future and our family had been shattered. About a month ago was the first time I saw my Tessa again. She had disappeared for over a year giving us little glimpses of her personality here and there. She had turned into a different person and I never thought I would see my sweet, happy, carefree daughter again. Her teacher even reported that she was a constant complainer which broke my heart. I truly believed that when Noelle died, part of Tessa did too. Despite all of this, I am happy to say that I am seeing my Tessa, the Tessa I gave birth to, return to us. I am happy to see her smile and carefree ways again. I had told her teacher that I wished she had known Tessa two years ago before this tragedy and now I truly believe she is seeing her. She is a magnificient human being who has so much to offer. Dave and I are the luckiest people in the world to have had two unique daughters in our life who have changed the world a little in their own ways.

In this New Year, I give thanks for the two most important people in my life....Tessa and Dave. Without these two people in my life in 2008, I never would have survived. I truly believe and hope that our 2009 will be filled with a little more laughter and happiness. I also know with all my heart that a little angel in heaven has had a little help in our survival.

Saturday, December 20, 2008 10:17 PM CST

We wanted to wish you all a happy holiday season & a safe and healthy new year.

Monday, December 8, 2008 10:50 PM CST

I always get excited when I find a site that is offering for people to join the bone marrow registry for free. Here is the website if you would like to get on the registry for free:

http://www.sheknows.com/bone-marrow/

Noelle never had a match so it is so important for people to get on the list. I did it last year and feel proud that I could be called to give someone the chance to live. What could be a better Christmas gift!

Thanks.....

Hello All!

Seasons Greetings from the Naylor Family! We, like many of you, continue to toil through the daily activities that make up life. Both Tonya and I tell ourselves daily that we have lost our memories and have let time fade away on many things...like updating. Sorry for the delay.

We continue to be blessed with three wonderful children in our lives. Noelle continues to inspire us every day to do better and be better people. Her charity, Noelle's Treasure Box, is continuing to see great success. We have been flooded with toys. YEAH! Our goal was for the Treasure Box at Children's to never be empty. And so far, it will never be!!! A reminder if you want to help, you can send us toys to our home address...see below for that address. Here are things that we are looking for...remember only new toys in their original packaging.

Beanie Babies
Stuffed Animals
Webkinz
Dolls (such as Barbies)
Little Action Figures (Superheros, GI Joes, etc.)
My Little Ponies
Polly Pockets and Polly Minis
Littlest Pet Shop Mini Sets
Match Box and other small cars
Mini-Lego and other Sets
Mini-Travel Games
Board Games
Thomas the train Mini-Trains
Teck Decks
DVDs for kids under 10 dollars
Little Einstein and Baby Einstein Toys
Small Electronic Hand-held Games
Color Wonder
Arts and Crafts
Scented Markers and Coloring Books
Journals and Fun Pens (like Gel Pens)
Word Puzzles, Soduko and the like
Any other toy that your own kids like!

Noelle...we love you dear. Thank you for giving us the spirit of the season and for helping us be better people!

Tessa... Continues to be an extraordinary 1st grader. She is witty, funny, adorable, cute and still very social. She challenges us and gives us the business, and we love her for it. She is so very awesome! Thank you God for her. Today, however, she was home sick. Ack! 103 fever and general malaise. Tis the season I guess.

Our foster son continues to also fill us with joy. Like Noelle and Tessa, he has such a great and wonderful personality. We love having him and seeing his great smile and wonderful vigor towards life. Another of God's Blessings.

Tonya and Dave...well, besides the memory thing? Doing ok.

Lots of love all ye citizens of earth. Happy Holidays.

Dave

Saturday, November 8, 2008 7:16 AM CST

Another blessing has come to our family in a way we never expected and only one person comes to mind when we think of it- our amazing Noelle.

Yesterday, an article ran in the Kenosha News on our family and our new project, Noelle's Treasure Box. This new motivator for our family stemmed from buying 4 year old birthday presents for our little girl and then donating them to the Bone Marrow Clinic at Children's Hospital. We brought about 20 presents to Children's last May. In August, Tessa learned the lesson of giving by helping Dave and I buy about 50 or so presents for the clinic. Thanks to generous donations, Dave brought about 300 presents a few weeks ago.

After running this article, we are no longer limitless in this new charity. In our wildest dreams, we could have never imagined this outpouring of love and support. We have once again felt the strength of our daughter pull people toward the idea of the "good in people". An older gentleman knocked on our front door yesterday. When I answered it, he asked if this was the Naylor Residence and handed me two presents for the clinic. It is amazing to see the angels on earth face-to-face. I said thank you because there were no words and he left never to be seen again.

Throughout this struggle, our faith has been questioned numerous times and when it has something has happened to show us that faith is what it is all about. People are good and want to do good things despite all the bad we see or read about. Our new foster child's aunt has offered her support and her families support in our new cause. She has thanked us for caring for her nephew and told us to our face how much she appreciates our help. Through this difficult and awkward experience, she is coming forward to support us.

We still miss Noelle with all our hearts and souls and we want her back with us everyday and every minute. However, we are so blessed to see all the good she has made happen in this vast world. She was truly our angel on earth and now in heaven. Thank you to all who have heard her message and have made it your job to continue what she has started.

Tonya, Dave and Tessa

Saturday, October 25, 2008 9:36 PM CDT

Happy Halloween Everyone!

Tessa had a great time trick or treating with the neighbors this year. She was a beautiful peacock (pictures in view photos) who took second place in the costume contest. It was so nice to see her running from house to house like she used to do. She looked so happy and innocent. I didn't see that look of concern on her face that says here I am again, the girl without a sister.

Last year, we made it to three houses and had to turn around. The emotions were just too much for all of us. Halloween is still a difficult one though. It is hard not to think about trick or treating in Disney or on the HOT unit. It is hard not to think of our sassy little lion and what she might have wanted to be this year.

Sometimes, I feel as if I am doing so well controlling my emotions and moving a little bit forward. Then there are other times where I am just smacked in the face by a memory or a tiny reminder. Today, I was watching a TV show and a little girl jumped into her mom's arms. I didn't think much about it at the time but then I was just hit by huge sadness. Just seeing that little girl wrap her little legs and arms around her mama was what sent so many memories back into my head. It may sound strange but I was happy to have that flood come back to me even if it made me miss Noelle intensely.

T

Friday, October 10, 2008 10:43 PM CDT

Our lives have been transformed once again. In a matter of less than a week, we have welcomed an eleven week old baby boy into our house. He is a fighter like our Noelle and it is a blessing to take care of someone who needs us. Although we are tired to have a newborn in our house, it has brought a little child-like joy back (even in Tessa who makes him smile the biggest smiles we have ever seen). The daycare staff is amazed at how happy he has become in just two days in our care. Little do they know how happy we have become.

We are also overwhelmed with the support you have shown us in Noelle's Treasure Box Donations. Dave spoke to our nurse from clinic and she was beside herself with happiness and gratitude. Thank you so, so much for standing beside us always.

T

Saturday, September 27, 2008 11:13 PM CDT

Our Sweet, Sweet Noelle,

Today, we had friends and family over to celebrate the miracle of you. None of us can believe that it has been a year since you were taken away from us. None of us can believe that we have had to survive without you. However, we are trying to show that Noelle-spirit, that never-give-up attitude you always showed.

We have tried to be strong, we have tried to keep going on, we have tried to keep faith. Today, we were reminded of just how hard it is to do all that in your absence. Sweet Noelle, we were filled with your love today. We watched hours and hours of videos of you (something that is so very hard for your daddy to do), we ate your favorite foods (chicken nuggets, fries, pizza, lo-mein, cheetohs, cookies, mini-M&Ms and spring rolls). We talked about you and our love for you. Father Mel held a private church service in our own back yard for you. We planted black and yellow tulips in your honor...right next to your magnolia tree. We made a stepping stone with gems and jewels that remind us of you.

Noelle, today you were celebrated and through our pain, we remembered the beautiful, tough, strong, lovable, intelligent, happy girl that you were and will always be. Today, we shared your love with each other and we remembered all that you did and continue to do for us. Today, we remembered how much we love you and how we yearn to see you again. Noelle, today was your day.

We love you so, so much. We can't wait to see your face again!

Mommy, Daddy, Tessa, Family and Friends.

PS The Gifts for your Treasure Box have poured in. We have filled two whole shelves already for the kids at Children's Hospital. Also, we have already received over 300 dollars for more toys. We are succeeding for you!!!

Tuesday, September 23, 2008 10:04 PM CDT

As we get ready to live the one year anniversary of Noelle's death, we are filled with many emotions including anxiety, sadness and regret. On the flip side, we are filled with such admiration for our daughter who fought the fight of her life while giving us so much in return. As you already know, she made us so, so proud and we miss her with all our hearts.

Enjoy the three new videos of her life.

Wednesday, September 17, 2008 7:49 PM CDT

Four Years Ago today, we started a very different life. A life we never asked for and a life we never wanted but a life we would live over and over just to be with our Noelle again.

One year ago, we filled our life with as many memories as we could think of and do---the zoo, picking pumpkins, giving Bella a bath, going to Chicago, going to the fair, playing outside, going for bike rides, going to the park, relaxing on the couch, etc. These memories make us smile at times and haunt us at other times.

We were eating dinner a few weeks ago and a hawk landed on our fence not 30 yards from us. A hawk has been our symbol of hope for the last few years. We felt blessed to have this sign. We needed it and it gave us joy.

Sunday, September 14th, 2008

September 14th, 2008
HAPPY HAPPY BIRTHDAY T-BIRD. Tessa turned seven years old today. She was happy and we celebrated with a small family get together. We rejoice in the gift of Tessa. We would be nowhere without her love! Happy Birthday dear.

As we celebrate, we fear. We fear the upcoming two weeks when we must relive for the first time the loss of our sweet Noelle. Noelle we miss and love you honey.

Wow. Just thinking it makes me cry. I pray for strength for us all as we see that day arrive.

Dave
PS Thank you for helping us with Noelle's Treasure Box. We have raised $225 already and have received several donations in the mail of toys, as well. Please know how deeply thankful we are for the donations. We have decided not to send individual thank yous out for donations, as we know you understand that we would rather save the money for cards and stamps to be applied to gifts for the kids!!! But we love and appreciate all the support!

OOPS...FORGOT TO MENTION THAT GIVEN THE COMPROMISED IMMUNE SYSTEM OF ALL THE PATIENTS, ONLY NEW TOYS CAN BE GIVEN...THANKS FOR UNDERSTANDING.

Hello All,

Well, we had a grand time giving the toys and we have gotten more ideas...actually directly from the kids at Children's.

Here are ideas of gifts they would want...
1. Color wonder books and supplies.
2. Fun pencils and gel pens.
3. Word games / puzzles / word searches / soduko (sp?) for the older kids.
4. Stickers!
5. Small toys that don't cost a lot but are big fun...such as Matchbox cars, polly pocket minis, small action figures.
6. Mini-travel games.
7. Washable Tattoos.
8. Mini lego kits.
9. Beanie Babies.
10. My little ponies.
11. Scented Markers.

Thank you all for helping our family keep Noelle's spirit alive!!!

Children's of Hospital is so overjoyed by the project and your willingness to help!

LOTS AND LOTS OF LOVE!
Dave

REMINDER TO SEND THINGS TO THIS ADDRESS
Naylor Family
3228 - 16th ST.
Kenosha, WI 53144

Wednesday, August 20, 2008 3:14 PM CDT

***our address is at the bottom of the page...smiles***

Hello from the Naylor Family!

Hi all. Well, I want to share with you a picture of Tessa in front of our new mission. Tonya and I were thinking on how to best help others. While we have several projects in the works (foster care, mentoring, etc.), we are so very proud of the mission we have taken on for Children's Hospital. A couple of months back, I shared with you a project I did with students at Nash Elementary whereby we took toys up to the outpatient clinic for kids who had Bone Marrow Transplants. There is a treasure box in the clinic so kids who come to clinic for check-ups, medicines, etc., can get a little gift while they wait...some times up to 10 hours (believe me, we had many of those!). When we dropped off the gifts, the student who went with me was amazed at not only the difficult clinic visits these children face, but also the smile a small toy brought to their faces!

Here are excerpts from the thank you note we got from Children's Hospital....

"Dear Dave, Tonya, and Tessa,
Thank you so much for thinking of us with your gifts for our treasure box!...you've put a lot of smiles on the faces of our kids!! Noelle's Little Einstein Rocket Ship went to a 4 year old little girl who had a transplant about 1 1/2 years ago. She really has had a tough time, but is doing so much better these days and is definately on the road to recovery. She absolutely LOVED the gift and her mom was speechless with tears in her eyes. She was so appreciative of the gift because this little girl too loves the treasure box as Noelle did....Through these gifts, she (Noelle) continues to touch others!"

Well, Noelle indeed did really love those treasures. It was one of the few things that made her happy near the end.
So, our family had decided to try to fund the treasure box each and every year for the entire year! The picture of Tessa is of the gifts we purchased to start the box off for the school year. We are in talks with staff from Children's to determine how many kids and of what ages come through the clinic and also so that they will get ideas for the box for us to purchase. Then, we will bring them up evey other month or so.

We used to raise money for Leukemia and Lymphoma Society and charities like that, but found out that 80r less of your donation actually goes into the hands of researchers or families. So, we have decided to instead, put that money right into people's hands (quite literally). So, we are going to raise money now for the treasure box, a very direct way to help kids like Noelle at Children's.

Several of you inquired as to whether you can help with this mission. Well, we would LOVE to have partners in this venture!!! We are asking for help in one of three ways...

1. Developing a list of partners who will help us raise some funds or get donations of toys (email us if you are interested in being one of those "Remember Noelle Forever Partners),

2. Donations of toys to be sent to us (all new, in their original package, and with parameters we will post once we talk to Children's),

3. Gift Cards to Toys R US or Target (the companies we are buying from). We do not prefer to accept money, just gift cards. With gift cards, then everyone knows where the money is going and we don't have to set up a charity or anything, it can just be a big extended family helping Children's. If you can not get out to get a gift card to one of those places, then we would take a check payable to David or Tonya Naylor (with "Noelle's Treasure Box" written in the memo). If you send money, please know that we are not a charity and can not give a charity receipt and that we will use the money to buy gifts we see suitable for the box.

Thank you all for your help in advance...your generosity helped us through when we were down...now we want to share that help.

We figure that a couple hundred people still check the site. So, if everyone helped with 20 dollars or so a year, we can get a great start! What do you think?

On the home front...We are winding down our summer and we are getting ready to go back to school. Tessa is excited about 1st grade, but is really hoping she gets to be in class with her best buddies (we will have to see as St. Mary's breaks up friends some times to help avoid cliques from forming...not a bad idea).

We started family grief counseling with a therapist. We have done very well in our adjustment after our tragedy, but want to talk it out for a while to make sure we don't bury any anger or other intense feelings that could pop up later in life.

Our foster care paperwork, visits and training have all concluded. So, fingers crossed, we will get a foster license Sep. 1st. Yeah!

Well, we will update more in a short while once we get everything going.

Thanks all and God Bless,
Dave

Address-3228-16th ST Kenosha, WI 53144

Thursday, August 14, 2008 8:03 PM CDT

Summer vacation is coming to a close for us. It has been filled with some happy times and some sad times too. It is hard to believe that the 27th marks 11 months since Noelle has died. Our pain has become less but we miss her everyday. I think Tessa felt Noelle's absence the most this summer. It has been difficult to go from having an instant playmate everyday to none at all. I always tell Dave that we have lost a lot but Tessa has lost the most. We will attend a retreat for our support group for a weekend in September. We are all looking forward to it as September will be a hard month.

Thank you for continuing to watch over us and sending prayers/positive thoughts. We were so happy to see our friends from transplant this summer--the Kirks and Rasmussens. It was nice to catch up, listen and to share thoughts. All our lives will be forever changed.

Here is Tessa's section of a poem wrote at Margaret Ann's Place with the other school aged children--I was intrigued by it.

My sister died, but she's not in a grave
she's in a pretty box for us to save.

T

Monday, July 21, 2008 10:52 PM CDT

I am very sad as I write this. I just found out that a good friend of ours, Tim Breuer, has died unexpectedly. We met in the leukemia world when Noelle relapsed in October 2006. His wife, Susie, has been my angel who looked after me over the last year and 10 months. We have related to and commiserated with each other over the deaths of our children. Tim and Susie's son died of leukemia just as Noelle did. I am devastated and shocked that Susie and her four surviving boys have to go through another loss after just loosing their son and brother, Bryce. I am sick to think that one family has to start the grief process again after just starting to recover a little. Why must a strong, loving, faithful family have to go through such a difficult life?

Please send your prayers and positive thoughts to the Breuer's or visit Bryce's website at www.caringbridge.org/mn/bryceb

T

Thursday, July 17, 2008 0:04 AM CDT

Hello All,

Happy mid-July to you all.

We have been busy with our house and painting and changing things to fit our style all summer. We went to Nashville and Gulf Shores, Alabama, for trips which were healthy and rejuvenating. We had a great time.

When we got back, Tonya and I discussed what to do next in our lives. Well, we made some very important decisions. First, we entered into a partnership with Children's Hospital of Wisconsin to bring gifts to Children in the outpatient Bone Marrow Clinic. 4 times a year, we will bring gifts for their Treasure Box (the box that they give toys out for cooperating and going through blood pressure, temp., etc., when they first check into the clinic). We are so overjoyed to have the opportunity to help.

Second, and most life altering, Tonya, Tessa and I have decided to be a foster family. We have begun the licensing process to be a foster family and take young children on long-term placements. It was a hard choice, but we feel as if we have so much love to offer others and what better way to help. We start training next week. We are really excited. I have been busy building closet organizers for all the bedrooms to increase storage space. Tonya has been busy decorating and making the house appealing and fun to live in. Tessa, well she has been going to Giddy Up camp all day with the Girl Scouts.

We are happy and blessed to be making these changes. God please watch over us and help us be the best Foster Family we can be.

God Bless All! I promise new pictures soon. Love to you all!

The Naylors

Wednesday, July 2, 2008 8:15 AM CDT

I was just made aware by another one of my fellow mom's that help is needed in the Conquer Childhood Cancer Act. It needs to pass to allow more research and money to find a cure for leukemia and other child cancers. It is very easy to send a letter to the state senators. Go to the following website and fill in the blanks. http://capwiz.com/curesearch/home/

The letter is written for you already so that makes it easy for those of us who don't like to think too much in the summer (me especially).

Anyways, I am off to my relaxation class (Tai Chai) to let off some stress and help me not be so angry at life.

I will leave you with some interesting quotes from the book I am reading, Beyond Tears. Sorry, if it is kind of depressing but these quotes actually make me feel like I am not as isolated and that I can actually go on without Noelle. These mothers who wrote this book are surviving 10 years later.

-It goes against the nautre of order of things to bury one's child.
-Bereaved mothers can no longer believe in natural order.
-Our comfortable, secure level, our innocence, all were shattered with the deaths of our children.
-We wake each day and pass the hours when there seems scant reason to do so.
-There is no such thing as "closure" following the senseless and untimely death of a child.

Thursday, June 26, 2008 1:11 AM CDT

Wow, it has been a long time since we have updated. Sorry, end of the school year and vacation limited our time....smiles.

What's new with us.

The family....just got back from Nashville and Alabama. We visited good friends, the Kirk family, in Nashville and had a great time. They were gracious hosts and we enjoyed catching up. Their daughter, Kate, had a transplant with Noelle (Noelle's first transplant). We then travelled off to Alabama, where we swam in the gulf, took many rides on the boat up and down the channel and hung out. The trip was a bit marred by my Man-O-War sting, but I healed pretty quickly. Burning little suckers! It was made special by a 45 minute ride on the boat next to a family of 5 black fin dolphins. I have some great photos, which I will post one of in a couple days.

Tessa....graduated Kindergarten with high marks and is an excited 1st grader to be. She has a busy schedule coming up with soccer, art and horse riding camp. She also made a very nice friend of our next door neighbor (Christie). The two have spent many days playing and have developed a strong bond. Yeah!

Tonya....got her contract at KUSD. In addition, she and I took a class together on Dealing with Difficult Parents and she moved to the top of the credits in the district. Congrats. She is busy trying to find herself again.

Dave....got a new position at work as the Dean of Students, which I absolutely love! Also, I have begun to play the guitar, which I got as a Birthday Gift. Very cool. My midlife crisis, has continued though....which I hate to admit. So far, I have changed my hair to a faux-hawk and started donning glasses. Now, I got a tattoo. Sorry Tonya, I joined "that" crowd. The tattoo is of a leukemia ribbon wearing a halo with sunrays shooting out all around. It has small initials of NCN inside. I will post a picture of that too, smiles.

Well, gotta run.

God's blessings to you all,
Dave

Monday, June 9, 2008 10:34 AM CDT

Last year at this time, we were finding out that Noelle had officially engrafted. We were filled with so much hope that this would be the cure Noelle finally needed. I remember telling myself, "don't forget this moment" and thinking about how my life would be without Noelle at one particular moment or another. I tried so hard to suck as much out of that time as I could and not wish one second away.

Tessa and I were able to participate in the Margaret Ann Support Group balloon release this past week. It was a beautiful 80 degree day filled with so much sun. We all wrote notes and attached them to our balloons. Of course, we chose a yellow balloon for our amazing Noelle. We said the name of our loved one and then released our balloons together. It was a sad moment but it also filled me with some hope. In that group, you truly feel accepted since everyone has gone through something similiar. I also looked around at the years of loss in that group. Some people's child had died years ago and some had just died. I felt hope that our family would survive even though it doesn't seem like it sometimes. I was also truly proud of my amazing six year old daughter who comforted another nine year old girl who's dad had died in April. Her older sister told me that she talks about Tessa all the time. All I know is that I am so blessed to have her as my daughter. Without her, I don't know if I would ever get out of bed.

�There are no words to describe the feelings we have when we confront loss---when we actually pass from having a living child to only having a living memory. If we were a picture, there would be only darkness. If we were music it would be a cry of pain or a single chord. But the loss of a child is not a painting�it is not music. It is the color of our pain. It is the desperate cry of our emptiness.� Facing the Ultimate Loss, Robert J. Marx, Susan Wengerhoff Davidson

Thursday, May 29, 2008 7:26 PM CDT

Hello All,

I rarely do this, but today I am asking for a prayer favor. A little guy, his name is Dalton, just underwent a kidney transplant. He is related to my sister in law Jennifer and he is having complications. Please, please, please go visit his site and fill it with lots of prayers.

I ask that you consider leaving him a prayer message in his journal and show him the power of prayer that Noelle felt.

His site is....

http://www.caringbridge.org/visit/daltonhatley

Thank you for doing this! I know Noelle would want us to help and pray for as many kids as we can...

Much Love,
Dave

Saturday, May 17, 2008 4:05 PM CDT

Life goes on here in Wisconsin! It is filled with so many ups and downs that catch you off-guard when you are not looking. It is so difficult to put into words but we are trying to keep our heads above the grief cloud that has swallowed us up. I never in a million years thought that Noelle would die. I always knew there was a chance of it happening (I would have been an idiot to not hear the statistics) but I always thought she would be the miracle that survived. It was a nice way to live life with her here but it sure is a sucky thing to have to deal with now.

We are busy trying to find the new people called Dave, Tonya and Tessa. The old people just don't exist any longer. I see little things in us that survived this journey but overall we are trying to create a whole new world that we can now live in. The hobbies and things that used to be so fun to do just aren't as fun anymore. The noisy household that existed has become so quiet. The dinner time chaos that used to happen is no longer there. There are times to read, times to watch movies, times to play, times to do independent things and I don't want that time. I want the life we used to have back but of course, that is not going to happen.

I know we will find our way in this world as a new family with new roles but it is so damned hard and such a slow process.

I love and miss you Noelle. You left a handprint on my heart that will forever be there. I can feel your little fingers and little feet in my hands. I can hear your little voice and feel your soft hair brushing across my cheek. My life is forever changed because of you. You will always be Mommy's baby.

Saturday, May 17, 2008 4:05 PM CDT

Life goes on here in Wisconsin! It is filled with so many ups and downs that catch you off-guard when you are not looking. It is so difficult to put into words but we are trying to keep our heads above the grief cloud that has swallowed us up. I never in a million years thought that Noelle would die. I always knew there was a chance of it happening (I would have been an idiot to not hear the statistics) but I always thought she would be the miracle that survived. It was a nice way to live life with her here but it sure is a sucky thing to have to deal with now.

We are busy trying to find the new people called Dave, Tonya and Tessa. The old people just don't exist any longer. I see little things in us that survived this journey but overall we are trying to create a whole new world that we can now live in. The hobbies and things that used to be so fun to do just aren't as fun anymore. The noisy household that existed has become so quiet. The dinner time chaos that used to happen is no longer there. There are times to read, times to watch movies, times to play, times to do independent things and I don't want that time. I want the life we used to have back but of course, that is not going to happen.

I know we will find our way in this world as a new family with new roles but it is so damned hard and such a slow process.

I love and miss you Noelle. You left a handprint on my hearts that will forever be there. I can feel your little fingers and little feet in mine. I can hear your little voice and feel your soft hair brushing across my cheek. My life is forever changed because of you. You will always be Mommy's baby.

Sunday, May 11, 2008 1:07 PM CDT

To my dearest wife,
Happy Mother's Day and God Bless you for all that you have done for our children and for me. You are a great mother and have shown your devotion to your kids by all that you have always given up for their betterment. You are a true testament to the word Mother and we love and adore you for that.

To all Mothers,
God bless and keep you strong as you raise and lead your children through this world. May you always have the strength and wisdom to help your children become the best people they can be.

With all of God's love,
Dave

Wednesday, May 7, 2008 11:44 PM CDT

.....Today, I ask for you to read this journal without judgement and without worry for my personal being (I ensure each and every one of you that I am not crazy, nor do I seek personal harm to myself whatsoever)......

It would be an understatement to say that at my lowest point I just wished I could die. No, I have had thoughts of insanity that very few have felt. I have had myself convinced that I need to die in order for Noelle to have someone to be with in heaven. I have thought of ways in which I could accidentally meet my doom, so that I could go to her side. Suicide couldn't do it; no, I am not sure they would not let me into heaven if I killed myself.

I don't even know how to share what it feels like to want to climb a mountain and walk so near to the edge that fate might give you a push. How do you share with a "sane" person that you have thought of dozens of ways to leave this earth and still have a ticket to heaven? How crazy would that be?

As I scratch and claw further from that blackhole of my heart, I realize how scared I am at times. Could I have really wanted to find an accident into heaven?

The evil that swirls in life has tentacles that reach deep into our being. But, Faith reaches deeper.

I now see through that evil and into the goodness of the life I have been given. I have walked hand and hand with fear, but still feel we can win our hearts back. However, I am reminded each day about the fragility of those who have lost a part of themselves. At my lowest point in the last 7 months, I really did have many crazy thoughts in my head. I want to share with you all a poem that summed up how deeply in despair I have been......

An Accident away from You
by David Naylor

Iron bars, the twist of fate,
holding tight can't break this hate.
Sitting round this plot of mine,
To speed up the lazy hands of time.
Finding ways to seek my end,
Can't make it by my own hand.
Cause heavens gates won't open up for me,
if I die in treacherous infamy.
Must find a way to make it so,
an accident the only way to go.
Demons twist these thoughts I think,
insanity is on the brink.
My hatred really is a place,
where I can not even see your face.
All I feel is all the hurt,
venom burning all my words.
I curse God, why didn't He see,
that I needed you right here with me.
I wonder if his arms would open up,
if he would see what I am thinking of.
Precious life no longer seems to me,
dying more internally.
I am not who I could really be,
because of fate's cruel reality.
Better chase these thoughts away,
before they take up more each day.
Cause life it seems to carry on,
even though I can't be strong.
So tell more lies that I am good,
saying what I know I should.
Would you still see me the same,
if you really saw my aim?
To kill myself without a shot,
no pill I need no fear I've got.
I'll just forget to breathe one day,
and they will carry all my pain away.
Angels of Mercy stop this life,
and tell I'm sorry to my wife.
For I just can't seem to take no more,
my mind is weary my soul is sore.
Forgive me world and those I leave,
for being weak, for being me.
Maybe I could have tried once more,
to board up misery's twisted door.
Struggling with the thought today,
better put it off for just one day.
Don't even have the courage now,
to find a way to fulfill some how.
I guess I just might have to wait,
until my nerve will cooperate.
So here I sit upon the floor,
a million miles to Heaven's door.
I know I'll see you there some day,
sooner, my dear, if I have my way......

Please, complete one favor for those who have lost and feel like life may just have lost its meaning. Give a giant hug to someone you know. Someone who you have not shown a sign of just how much you need them in your life. Maybe a co-worker, maybe a friend, maybe your child, maybe your spouse... You never know how much they could be hurting on the inside and how truly lost in life they might be. Maybe your hug will remind them that it will be ok. For me, I know that the people around me have helped rescue me from my own black hole.

Go out and rescue....

Lots of love and thanks for your continued support these 7 months after Noelle had to leave us.

Hurting, but healing....
Dave

Saturday, April 26, 2008 11:19 PM CDT

Is an accomplishment still an accomplishment if it is achieved on accident?

There were many things I wished to accomplish with my life. I wanted to be a soccer coach who won a state title, a school principal, and a writer. I felt assured that these goals would be met or at least be on there way to being met by my mid-30s.

I have not achieved any of those goals.

However, I am beginning to realize that our greatest accomplishments are often the ones that we achieve just by letting our inner self free.

I brought Tessa to school with me for half a day on Thursday. She shines a brilliant personality where ever she goes. On Friday, I received many compliments on how sweet, funny and creative she has become.

Accidental. I realized from those comments that although I am not a writer, principal or an accomplished coach, I have helped raise two spectacular children.

I don't know why I have never thought of it as a significant accomplishment to be a parent of great kids. Maybe it is just that...Tonya and I, much like many parents, don't go about trying to prove we are great parents, we just be who we are and hope that our love will help shape our girls.

Two great kids ~ what an accomplishment!

I encourage each and every one of you to see your children as a major accomplishment. Cherish the time you have helped them grow, learn and love. For, maybe through them, you will see many of your own dreams live and thrive.

In honor of children,
Dave

Wednesday, April 16, 2008 8:51 PM CDT

Hello All,

Well, we are doing some typical things for now to pass our time. We are teaching T-Bird to ride her bike without training wheels. She is getting better and we are proud of her efforts. We read nightly and are impressed with how well she is reading now. Way to go sweetie!

At work, we are both pushing for the home stretch for summer to come. We have lots of plans and are excited to be off all together again. We both want to go to part-time....Smiles.

Well, have a great week.

Dave

Monday, April 7, 2008 10:01 PM CDT

In the last week, I have been in a spiritual dusk til dawn. Last Monday, my soul wept through my being and my anger surfaced again. How easy the angers of the soul can flow when the lessons of love are embattled. My heart seered as I thought of Noelle's birthday, without her physical presence.

Tears filled my eyes hourly and my concentration would not stay on work. I applied for a personal day for Noelle's birthday and staggered through the day. Pain eclipsed my heart and darkened my core.

Tuesday morning, I awoke differently. It is as if Noelle felt through my pain and grasped my heart, reigniting its flame. Signs abound of her prescence and my darkened heart began to glow.

The signs were too numerous to ignore and too powerful to abate. Anger was not an option. The day appeared somewhat dark and gloomy. Clouds filled the sky for the majority of the time and there was reason to be down. However, Noelle would allow no barrier to joy and reflection.

At breakfast, I noticed the long and tired face on our waitress. Her forced smile spoke of hurt and weariness. Noelle reached generosity through our hands and we were compelled to leave her a large token of our gratitude for her serving us.

We stepped out of the restaurant into continued weeping skies. Yet, sunshine radiated through our eyes. On the way into our neighborhood street, we felt the urge to pause. There on a street sign sat an enormous hawk. We stopped the car and looked to it. The hawk turned directly to us and its eyes locked on us. It spread powerful, yet graceful wings and flew off.

The day continued with quiet reflection and some work around the house. My spiritual dawn was coming.

We left the house to pick up Tessa and stopped to get Noelle some balloons. Our plan was to have a quiet moment near the lake and release two yellow and two black balloons in rememberance of her fourth birthday. We picked up Tessa and drove quietly to the lakeside.

As we walked to the point of release, we paused on the sidewalk. Directly below our feet, careful placed, was a spray painted number 4. No other numbers or signs were painted on the sidewalk. Just, as if tossed there for us and us alone, lie a 4. We released the balloons and watched them fade to speckles against the cloudy sky. As we turned to go, Tessa began picking up small objects. I could not see what she had paused to pick up and the wind scuttled through my coat. So, I continued on to the car. When Tessa got to the car, I glanced at her find. In her hand, she held multiple yellow and black feathers. However, these feathers were unlike any feathers I have ever seen. They were perfectly half black on the bottoms and half yellow on the tops. It is as if Noelle flew down and molted her favorite colors right next to the four that was painted on the sidewalk.

Renewed, we journeyed home. At home, we took time to get ready for the big event ahead. When Noelle died, I was overwhelmed with the need to be baptized and begin to truly live the faith that was fostered during our struggles. When we reflected on the time for this event, Tonya suggested Noelle's birthday. The idea rang of bittersweet tones. However, the melody of honoring Noelle's memory with the ultimate bond with our Lord, rang loudly in our hearts. And so, we planned my sacraments for Noelle's day.

We arrived to a darkened church, tossed with harmless shadows. It would be a mass unlike any other. 11 people were in attendance in total, for a full Catholic mass. Yet, the room sang of presence. Noelle was there. She was everywhere. I could feel her presence and that of the Lord throughout the ceremony. I was officially welcomed into the church, and my soul welcomed a new sense of forgiveness of life's trials and my earthly struggles.

Mass commenced and we proceeded with readings, etc.

Then, the time had come for me to be Baptized. My soul trembled and I felt miniscule in the presence of the Lord. However, my hands and body stood firm. On Noelle's day, I would receive my new bond with the Lord. Her lion's strength filled me and kept me up.

If you ask anyone who knows me, I dislike water being poured on me and definately don't like my hair being messed up. Today, however, I hesitated to dry away the holy waters. I kept them as long as I could and we proceeded to confirmation.

As I stood there being confirmed into the Catholic faith, I closed my eyes. Wind rushed through my skin and penetrated my every thought. I felt a powerful force, my every breath crashed by a healing wave.

And then, it was time for communion, and, it was time for Noelle to show her presence. Despite the dark and gloomy skies, Noelle's rays of light shone through. As I was about to get communion, a piercing spear of light shone through directly onto where we were standing. It was ever present and ever powerful. A ray through the clouds focused on us. Noelle showed me the strength of our new bond. She lit her torch of approval. I have never been bathed in such glorious light and have no doubt that the sun came through by her doing. It is as if she said, look at my family and how they love me. There I stood in a spotlight of her love. There I stood, a new Catholic, a new man.

My journey to the Lord started with Noelle and her illness and was strengthened by the rememberance of her earthly strength and vigor for life. She, my daughter, shared her day with me and allowed me to permanently affix my faith in the Lord to the memory of her birth. Thank you Noelle and thank you God.

We finished off the week in the way we Naylors have grown to live...with a party. We had friends and family over and reflected on life and the goodness of those around us. We reflected on our gifts both seen and unseen and reminded ourselves that while God does not send us illness and weakness, He most certainly sends us Courage and Strength to rise above.

God's blessings to you all,
Dave

April 1, 2008

HAPPY 4th BIRTHDAY, NOELLE!

We bought you the Little Einstein's set with Rocket and the Leo and the Pyramid toy. You would have loved to play with them and we would love to play with them with you. Tessa bought you Ming Ming. She knew it was perfect for you when she saw it. She knew how much you loved to watch the WonderPets.

We desperately miss you and long to see you again.

Mommy, Daddy and Tessa

Saturday, March 22, 2008 12:37 AM CDT

HAPPY EASTER!

We are consumed with memories of Noelle right now with so much happening in the next few weeks...ANNIVERSARY DATES, BIRTHDAY, TRANSPLANT DATES, etc.

Love and Peace!

Saturday, March 22, 2008 10:04 AM CDT

Hello All,

As we enter our first Easter without Noelle, we must reflect on the goodness and the power of the upcoming day. God sent his only son to the earth to sacrifice his life for our sins to be forgiven. He suffered and died for us and then rose to eternal life.

God sent our youngest daughter to us to sacrifice her life so that we all might learn to love deeper and live each day to its fullest. It is fitting that her birthday is so near to easter. We named her Noelle, the symbol of the birth of Christ. She was born on a day that is very close to easter each year. She suffered and sacrificed so that we all might be better people. We are the blessed who had a chance to raise a true symbol of God. Thank you Jesus for that opportunity.

In memory of Noelle and in deepest gratitude for the gift from our Lord, I have decided to make a permanent symbol to my love for her and my gratitude to the Lord. Tonya and Tessa are Catholic and have been baptized. I am neither. So, it is with reverence to our Lord and love for Noelle that I am being baptized and confirmed a Catholic on the anniversay of her birth, April 1st. My soul and hers can be one on Her day and my holy connection to our Lord will forever be intertwined with the memory of her birth.

With all my love Noelle and in deep gratitude for all the love that you gave to us,
Daddy

Saturday, March 22, 2008 12:37 AM CDT

Saturday, March 22, 2008 10:04 AM CDT

Hello All,

As we enter our first Easter without Noelle, we must reflect on the goodness and the power of the upcoming day. God sent his only son to the earth to sacrifice his life for our sins to be forgiven. He suffered and died for us and then rose to eternal life.

God sent our youngest daughter to us to sacrifice her life so that we all might learn to love deeper and live each day to its fullest. It is fitting that her birthday is so near to easter. We named her Noelle, the symbol of the birth of Christ. She was born on a day that is very close to easter each year. She suffered and sacrificed so that we all might be better people. We are the blessed who had a chance to raise a true symbol of God. Thank you Jesus for that opportunity.

In memory of Noelle and in deepest gratitude for the gift from our Lord, I have decided to make a permanent symbol to my love for her and my gratitude to the Lord. Tonya and Tessa are Catholic and have been baptized. I am neither. So, it is with reverence to our Lord and love for Noelle that I am being baptized and confirmed a Catholic on the anniversay of her birth, April 1st. My soul and hers can be one on Her day and my holy connection to our Lord will forever be intertwined with the memory of her birth.

With all my love Noelle and in deep gratitude for all the love that you gave to us,
Daddy

Wednesday, March 12, 2008 11:09 PM CDT

Tuesday, March 18th.

Hello All,

Sorry for the lack of updates, but we have all been very busy adjusting to our new house. I will have photos within 2 weeks of the new house and Noelle's room. We want it to be in better shape for a picture, so we are working to unpack.

We sold our other house on Friday and were very happy to have completed the move entirely. We are excited for the new family moving in there. They are a family of four and can use the space. May God bless the house that it may provide them many years of happiness and love.

Well, we will update more later this week or after our trip. Take care all and God Bless.

Dave

If We Could Have You Back
By Ann M. King

If we could have you back for just one day
There would be so many things we would like to say
If we could just be with you for one whole day
To have you close and know that you really are Okay.

If we had known that you would be gone forever
If we had known all those ties were going to be severed
If we had known the pain, the loss, and the ache
If we had known the difference without you would make.

In the darkness you slipped away from us all
Now it�s just your memories that we have to recall
They say that parting is such sweet sorrow
But it�s the longing, the wondering, and how to cope with tomorrow.

Now all we have are memories
The good times that we had
We spend so much time in tears
And pain and feeling sad

So if we could have you back for just one day
You could let us know ho to cope until that day
When we�ll be together as a family once again
When we�ll all be happy and free from all this pain.

Oh! It�s so hard to live when your loved one has to die
Then we spend out lifetime trying to say Goodbye!

If you would like to see a video from Margaret Ann's Place, please go to www.margaretannsplace.org and click on video. This is the place that we go to for support.

Also, you can find Tessa and Tonya's pictures on the Locks of Love website for donating their hair. Look under donors.

Monday, March 3, 2008 1:31 PM CST

I told myself I wasn�t going to write on Noelle�s site anymore. I don�t know if it is just too sad, too frustrating, too devastating or maybe I feel too defeated. It has been five months since Noelle died and the tears still come, the emotions are still fresh, and the loneliness is still present. We all miss Noelle so much. We may not talk about it as much but we see it in each other�s eyes. I see it in Tessa�s eyes when she see others playing or talking about their sister or brother. I see it in Dave's eyes when he looks at pictures. I feel it when I see families with more than one child.

We are moving on Saturday and Noelle�s room is now empty. I created that special room for her to grow up in. I put so much love and care into every color, every piece of art, every drawing. I can feel the lump in my throat as I think of it. Now, when I shut the door, the door slams and there is an echo. She is no longer with us.

Noelle has been gone for 5 months. She was diagnosed at 5 months of age with the awful disease of leukemia. The doctors told us that no matter what we did, the leukemia would return. We tried so hard to not believe them but they were right.

5 months is such a short time, coming and going so quickly. We would give anything for another 5 months.

T

Wednesday, February 20, 2008 0:01 AM CST

The last few days of Noelle's life were the hardest I will ever live as a parent, as a person. The intense emotion still stirs my dreams and clouds my heart. I have not really talked much about those last days, nor have I had the courage to relive and really feel them. However, I want to start that process and need to let it out. Noelle's love was so intense and our lives together so emotionally charged that who knows what will poor out.

I wanted to dedicate the first step in this process to just how much we loved, no LOVE Noelle. Here is a copy of the final words I said to my daughter at her funeral. It represents all the love that Tonya, Tessa and I have for Noelle.

NOELLE CLAIRE NAYLOR
FUNERAL ADDRESS
Presented by her daddy

God has granted us with many, many gifts and we give reverence to His care of our family and Noelle.

My Dearest Noelle....wait, I'm sorry....I mean Big Girl,

It hurts so much to think about our time together, but not because of your pain and suffering. No, the reason we hurt is that we miss YOU and YOUR LOVE so much. It would be easy to think of you and remember hospitals, long trips across the country, constant worry, pain, "Tube-ies," long nights on that cramped hospital bed, awful procedures, yucky medicines, roller coasters of emotion, and lots of fear.

That is not what remains, though. When we think of you, all these things fade away. Instead, our memories are filled with nothing but extreme joy, happiness and love.

When I close my eyes, I hear your funny giggle. I think of all the things I taught you that mommy did not approve of...like.... "Calm Down Sir, I am Calm," "What the Cracker," "Knock it off lady (as you punched Nana)." Noelle, we still laugh at your jokes. Epecially, "Waiter, what's this fly doing in my soup? Looks like it is doing the back stroke, SIR!"

We think of your intense smile and your never give up attitude. We think of how strongly you clung to life. We are constantly reminded of how independent you were. Did you know that when you were 9 months old, and still on chemo., you taught yourself to walk? We didn't help you. You just pulled yourself up one day and started to take steps. Did you also know that when we were in North Carolina, you taught yourself to use the potty chair? You just looked at mommy and daddy and as clear as day said "I don't want diapers anymore." And guess what, you didn't wear them ever again.

You were so strong, Big Girl. You taught us to always, always give our best effort, even when we don't feel well. We remember so vividly your first transplant. After you were released from the hospital, you had many stomach problems. You threw up nearly 10-20 times a day or more. Yet, after every time you got sick, you looked at us and smiled. Your smile seemed meant to tell us that you were ok and we didn't have to worry so much.

During your last week here on Earth, you comforted all around you as if THEY were sick. You said to momma all the time "It's ok, It's ok. Don't cry," while patting her back. On the night before you were taken to heaven, you looked so deep into my eyes and said "Don't worry daddy, I love you." As you were dying, you thought of us and gave us peace. When you were in the ER, you even kept telling them that you needed your potty chair, because you didn't want to go potty in your panties.

Strong until the final minute. Strong from day 1 up until the end. They say that girls are filled with sugar and spice and all things nice. Although you had so much sugar, you definitely had tons of spice, too! You were a free spirit up until the last moment, telling people to "get out of here, right now," when you didn't want them to examine you. You didn�t roll over for anyone or anything!

You taught us to love each other deeply. You taught us to cherish each moment as if it were the First and Last, all at the same time. You taught us that if we have nothing else in this world, it is ok, because we have each other. You taught us to see mini-miracles around us everywhere we go. We learned from you to appreciate sunny days and rainbows and hawks and kisses and hugs and smiles and to be nice to others no matter what. You taught us to say we love each other often and to lend a hand to those in need. You taught us to be generous and kind and to give of ourselves to others. You taught us to have faith in things and believe in the best. Most importantly, though, you taught us that life is short and we must make the most of it. Like you made the most of every day!

Big Girl, you were a brilliant light shining on every minute of every one of our days. You loved the song "You are My Sunshine," and would dance with mommy or me every day until we dropped. And the song is fitting, as you were and continue to be our Sunshine. So, our sweet, sweet girl, this song is dedicated to you... May you always remember how much we all love you and how much Sunshine you brought into our lives....

Daddy, Mommy and Tessa...

May you all continue to find blessings and love every day,
Dave

PS We miss you Noelle

PSS As much as it hurts to look at them, I added some of the final pictures we took of Noelle.

Tuesday, February 12, 2008 11:11 PM CST

Hello All,

Well with fingers crossed I say the following....after just 8 days on the market we have accepted a great offer on our house. They come for the home inspection on Friday and if that goes well we will be hearing about a date to close some time in the near future. I hear that the person buying our house has three children and I hope and pray that they might enjoy and use this house the way that we were able to enjoy it. It truly is a great house! I thank God for his guidance in helping our families intersect this way and hope that he rains many great years for them in this house.

Amidst the darkness, there is always His light.

Thanks be to you all for your great support. We love you guys,
Dave

Sunday, February 10, 2008 10:21 AM CST

Hello All,

Well, we are very busy keeping our house clean to sell and cleaning, painting and fixing the new house to move in... We have not a moment to spare for anything else. Selling a house is very stressful, as it has to stay 100% clean all the time. On the good side of things, we have already had about 10 families look at our house and several more scheduled. Hope an offer comes in soon or the stress might cripple us all :o)

We got the furniture delivered for Noelle's room and my brother helped put in new Sconce lights over the fireplace in there. It looks so beautiful. Our friends, the Hellwigs, delivered a beautiful wood plaque that was painted a goldish-yellow and black. On it, it said our favorite Abraham Lincoln quote "in the end, it doesn't matter the years in your life, but the life in your year." Noelle will love it! Thank you guys.

A HUGE THANK YOU to my Brother, Chris, for coming and helping us with so many things in our house. He put in new faucets in 4 sinks, put up 4 lights and fixed our sump pump. You truly are a very gifted person bro and we love and thank you so much. And on your birthday weekend!!!!

Thank you all for still checking on us...we love the support and it is helping us heal.

With so much gratitude for all we have,
The Naylors

Saturday, February 2, 2008 0:08 AM CST

Somehow, our daughter continues to give to us each day. Today, we painted "Noelle's room." A bright and illuminous yellow, the way she would have wanted it. The color is unassuming, yet vibrant and full of zest. It is Noelle. At times, she was quiet and retreated into the security of her mommy's embrace. During others, she radiated an unbelievably charismatic exuberance.

While we didn't directly discuss the experience, we each took away some pleasure and pain at our day's work. Reflecting on our collection of moments, I stored the beauty of what we did for her. Reflecting on her loss, I sobbed for her departure and the true meaning of her room. We honor her rich spirit, but are reminded of her frail form.

And so the night ended, with a deep and sorrowful reflection on the loss of our sweet girl...giving way to the hope of a better day.

Seeking hope,
dAvE

Sunday, January 27, 2008

Four Month Anniversary

i carry your heart with me (i carry it in my heart)
i am never without it (anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)

i fear no fate (for you are my fate, my sweet)
i want no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant and whatever a sun will always sing is you

here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

E.E. Cummings

Tuesday, January 22, 2008 11:01 PM CST

Hello All,

It was the existentialists (Camus, Sartre, etc.) that believed that humans live in a hostile environment filled with isolation, pain and an unexplainable set of circumstances. I have heard it stated as "life is pain and misery and then you die." That philosophy is convenient and is one that I have been tempted to adopt recently. It takes all my will power not to fall into the "poor me" or "poor us" trap.

However, Sartre and his fellow philosophers also believed that each of us has a free will and we must deal with the consequences of that will.

None of us are granted anything other then today...the moment we take each breath. Some of us, don't even have that left in us. Yet, it is easy to believe that my pain grants me a set of entitlements. Well, I deserve this or that because I have suffered. My life has been hard, so my luck must change.

Jesus, though, did not give us entitlements or promise anything, save one statement...the promise of eternity. The road to that gift is fraught with free will; it is blanketed by the power to choose.

We will not have a "perfect" life, and we must choose how to deal with it. People will pass on from us. Jobs will be lost. Money will come and go through our fingers. Love will lift us up and challenge us every day.

Strangely, this reality is what keeps me going on my hard days. Why do I think I deserve anything in life? I don't deserve anything more than the gifts I have been given...free will, and if my free will doesn't interfere with God's plans for me...eternity.

So, NOELLE's 5TH LESSON to us is....

The pains of our existence are feeble compared to the promise of eternity.

Though it continues to be hard for us to accept the loss of Noelle, we know that after our lives on earth are done, we will be together forever.

Many of God's blessings,
dAvE

Monday, January 14, 2008 3:24 PM CST

Hello All,

Hope everyone's new year has been a good one thus far. Tonya, Tessa and I have debated for the last two months and have all agreed to move. We are staying in Kenosha, but as part of our healing process we are buying a new house and starting over fresh. Part of our desire to move is to have a "Noelle" room that can be celebrated and appreciated by all. We simply do not have the space in our current house to do that here. We put in an offer on a nice house and it was accepted. We close on January 28th, and will move a couple of weeks after that date. The new house is on the north side of Kenosha.

In the house, there is a nice office space that has a gas fireplace. It will be solely dedicated to the remembrance of Noelle, as it is the first room you see when you open the front door. There will be a nice mantle with a huge picture of Noelle over it and a water fountain that makes a nice, serene gurgling sound.

We know that some counselors caution not to move on too fast, but currently we are all in a funk and need a change. We also desparately want to show our love for Baby Kitty and dedicating our first room to her is a great way.

In a couple of weeks, we may be calling on some of you, our family and friends, to help us with the move or preparing the new house. Maybe a painting party? Smiles.

Well, God's blessings to all.

Dave

Sunday, January 6, 2008 1:05 AM CST

NEW NEW NEW
After several air raid sirens and an hour in our home's basement, we are all ok and accounted for tonight. The storm, thankfully, passed just north of us. Several tornados hit other parts of the city and county, but left our side of the city untouched. We hope and pray that everyone else escaped harm and damage. The news indicated that no one was killed...thank GOD!!!

Our thoughts and prayers to anyone in our area affected by the storms.

Hello All,

Once again, I apologize for such a delay. We have been busy with New Years and returning to work. Tonya returned to work on Wed. and I happily received my second check (Yahoo! Money coming in).

The holidays presented blessings and challenges. Mostly, we all missed Noelle tremendously. It is strange to think that this was our first Christmas without Noelle and our first Christmas in our home in 4 years. We were either at Children's of Milwaukee or in North Carolina for the previous holidays. We each spent time reflecting on life without Noelle, which was miserable. Tessa shared a lot and acknowledged how lonesome it has been without her. I am proud of Tessa, who has begun sharing more again. Tonya and I talked about how this Christmas would have been so different with a healthy Noelle. We always told ourselves that when our children turned 6 and 3 that our lives would be in a great place. Well, life sucks some times.

My phone began playing Noelle's song without me turning it on again. I had previously talked with Noelle and told her that she could move on if she needed to. Although I do not want signs of her to disappear, I want her worry for us to be less. I said that I would be ok and that she should just watch over Tessa. However, she still keeps sending me signs. Privately, I cheer for this good fortune. The other day, for example, we were talking about Noelle when a fat hawk flew right down past our windshield and off into the road. The hawk then veered right and was gone. WOW! Never seen that while I was driving before. Thank you Noelle.

Well, it is late and I haven't slept well the last couple of weeks, so I should try to get some sleep.

God Bless All,
Dave

Monday, December 31, 2007 7:25 PM CST

HAPPY NEW YEAR!!!

Dear Friends,

We just wanted to wish you all the best New Year possible. May you have much happiness and many blessings in 2008. We look forward to a change in luck and hope to awaken tomorrow refreshed with a new sense of the world. We pray that we might find good health and contentment as we continue to heal.

May God Bless and keep you all.

The Naylors

PS Happy New Year Big Girl. Hope you are partying it up in heaven.

Wednesday, December 26, 2007 0:14 AM CST

Merry Christmas to All!

Our emotions rise and fall each day. We celebrate the coming of our lord through the birth of Jesus Christ. However, we struggle with feelings of loss and fear. Please God grant us some relief from pain and sorrow.

I know we have been blessed with many gifts and that our hearts should rejoice in all the Lord has given to us. My heart is tormented though. These thoughts continue to plague my soul....

My dearest Noelle,

My heart cries for our surviving
the day without you.
My soul fears for the day
that our light of healing
casts shadows on memories lost.
I bow to sadness of the truth that
some day I shall feel less pain
and less near you.
We move on less full,
less who we were and more who
we never wished to be.
There is no solace
for those left to weep;
nothing but faded sorrow and
comfortless rejoicing.
For our hearts are bonded
to our cruel fate
and our necessary future.
We forge forward
forever drowning in water
of unhappy healing.

In deepest sorrow without you,
Daddy

Friday, December 21, 2007 5:30 PM CST

Friday Night

A New Video was added tonight (Merry Christmas, Lisa). It is a video of Noelle at the Fireworks 2006. I love to listen to her expression and how much she enjoyed the night. Even though it is hard to see, there is so much amazement and wonder in her voice.

Tonya

Merry Christmas!!!

I shared this story with colleagues at work and wanted to share it here as well. This interaction sums up our famiily's view of the holidays. I walked into a 5th grade class and this was what was said between a boy and myself.

A student said to me today that his friend still believed in Santa Claus. He chuckled. I told him that I still believed in Santa as well. Why? he asked. I told him that some people might view Santa as a fictional character that brings gifts to billions every year. I said that I believed differently. I told him that I believed that Santa lived in each person that gave freely, shared generously and was humble in life. His eyes lit up and I do believe he understood a bit differently.

To all of the many "Santas" out there...may you all find many of these opportunities in your own lives.

Happy Holidays,
The Naylors

PS I am so very proud of my wife for all she has done and lived through. I want to congratulate her on interviewing and earning her position back in KUSD. She starts January 3rd. Congratulations my dear. I know you will be a great Speech Therapist again!!! All my love.

Sunday, December 16, 2007 8:51 AM CST

Holiday Greetings All,

Christmas has meant many things at different times in our lives. When we were children, it meant presents and family and snow fights and hot chocolate. Hopefully for most, it meant church and learning about our savior Jesus Christ.

Now, Christman means something else to us. It means
Noel(le). It means a time, that in spite of our tremendous sadness and feeling of loss, we celebrate the gift of our baby girl. God seemed to bless us with knowledge of her name from the time leading up to her birth. Tonya and I never waivered in our desire to name her after the most blessed holiday of the year.

Little did we know that our simple gesture of homage to our Lord would be truly rewarded with the gift of an angel. We were blessed with a tenacious, strong-willed, beautiful angel sent to us for our salvation.

Noelle, you brought to us the true meaning of Christmas and the true meaning of life. Until we meet again, your light shall shine brightly over our lives on earth. We thank God every day for giving us the gift of you!!! Wherever we go and whoever we become, we will always carry with us a badge of love and reverence to you. You drive us forward each day with your lessons of love and courage. We are so proud and thankful to have been part of your earthly days and pray to God that we may meet again.

This holiday, we Celebrate Noel(le)!

May you all find the many blessings in your life and come to an understanding of the love of our Lord.

Merry Christmas from the Naylors...

Wednesday, December 12, 2007 4:21 PM CST

Thank God for Snow Days!

The snow day in our district couldn't have come at a better time. Monday, Tessa and Tonya and I had a nice evening that showed our sweet daughter's happy and charming side again. Then, we wake up to a snow day on Tues. Oh, thank you God. We spent the day lounging in our pjs, wrestling, playing games, having lunch together, going to a movie (Mr. Magorium's...), and then going out to a restaurant together. Tessa showed her great and witty character all day and we had such a great time. Welcome back T-Bird, Welcome back!!! Smiles.

Thanks be to God for all we have to celebrate this Christmas. God bless and keep you all safe this holiday!

Dave

Sunday, December 9, 2007 2:36 AM CST

Hello All,

I am sorry it has been a while since we have written; however, our souls are drained from another week without Noelle. As the Christmas holiday draws near, we are having to try hard to be strong. I am weary of nights without my sweet baby. Tessa is weary without her sister to play with her and be with her. She had a friend over the other day and had a great time. Yet, when her friend told her she had to leave to get her sister, Tessa had a huge melt down. She got very angry, threw a huge tantrum and would not even look at or talk to me. It was very disheartening, but I know why she did it. Later on, she simply said that her friend was going to see her sister, and that she was sad she didn't have a sister any more.

In the last week, Tessa has been extremely angry and misbehaving very frequently. At Margaret's birthday party last night, Tessa felt sad that Noelle wasn't there to play with her. She got bored and angry and started doing some strange things. She took a lady's shoe right off her foot and threw it across the room. She also picked up a pool stick and ran like a knight with a lance at a man and hit him in the stomach. Wow! She is really struggling this week and it hurts us to see her this way. She told us that she HATES Christmas and that she didn't want it ever again.

Seeing Tessa suffer so much breaks our hearts. She used to be such a happy, glowing personailty. Now, she is really struggling so much just to be nice to others. We know that she will have good and bad days, but it almost seems as if we lost both our girls. Noelle died and went to heaven and Tessa's soul was so hurt that her zest for live died too.

Please use a few prayers to pray to God for Strength and Healing for Tessa. We don't care about ourselves, just that she doesn't have to feel so low and depressed. We want her to regain her love for life!!!

We love you Tessa and would do anything to take away your pain!

Dave

Sunday, December 2, 2007 7:12 AM CST

Sunday Night

My dad sent this email and I couldn't have said it better myself so I am just copying his words into the entry for today.

Message by Poppy:

This morning I attended breakfast with Santa and Tessa, David and Tonya. Annie ,a friend of Tessa's,mother Susie treated us. I told her she didn't have to buy me a ticket. She said it was nothing. I got yours for the Senior price. Susie and her family are just great people. June of 2005 Margaret and I dropped Tonya, Tessa and Noelle off at the Kenosha Airport. They would fly a corporate angel jet to Raleigh/Durham to begin the adventure there. Susie and her family were there with balloons and signs for a gracious sendoff.

Today Susie trumped that day. Tessa wasn't all that excited to go to Breakfast with Santa. We were waiting in line to see Santa and now it was Tessa's turn. She scampered up to him. He said is this Tessa big sister to Noelle. Her eyes got big and her mouth dropped open. He asked her if she had a list. She pulled out a list along with pictures of what she wanted glued next to the item .. He asked her if she kept her room neat. She said you would have to ask my mom that question. He said is that Dave standing next to your mom. He went on to say boy could I tell you some stories about Dave when he was growing up. When her turn was over he gave her a present. We all walked away and she opened it. It was a framed picture of she and Noelle walking in the rain with their raincoats and boots on. They were holding hands. The caption on the picture simply said Sisters Forever. She got the biggest smile on her face and told us "I now know that he is the real Santa". It was all I could do to hold back my tears. During these last 3 years I have had many chances to see Angels . Today I had the privilege of observing Angel Susie at work. Thank you Susie. You made all of our lives better but you showed a little girl who asked her parents the day Noelle passed if she was still a sister that indeed she is still a sister and will always be the big sister to Angel Noelle.

Love to all you other angels out there,
Peter

Sunday Morning:
I put a new video in the links. It was taken at Tessa's birthday party, 9/16/07. Dave is making our godson, James laugh and then Noelle wants part of the action. It was one of the first times we had seen her laugh like that since before her transplant in April. She was that happy for that whole week before she died. It was her present to us. We remember her now, not sick, but happy and playing right before she died. This fact does comfort us but it also caused our shock when she died. We believed she was doing so much better. Our nurse practitioner and the nurse from clinic both commented on that fact after Noelle died saying they would always remember how happy Noelle was that last day of clinic.

T

Tuesday, November 27, 2007 11:38 PM CST

THURSDAY UPDATE

Last night, our dear friends said goodbye to their sweet daughter Alexia. She died fighting Leukemia and she was brave and tough until the end. Our souls hurt for them and we send all our prayers their way. We will never forget you Alexia and we will continue to show all our support for your family. We pray that Noelle greeted you as you went into Heaven and hope the two of you are playing together in the good graces of the Lord. God Bless sweetie.

www.caringbridge.com/southamerica/alexia

WEDNESDAY UPDATE

WE love you Alexia, we love you. Your family means the world to us and we pray that God holds you more tightly tonight then ever. Peace and love be with you all.

www.caringbridge.com/southamerica/alexia

Today was exactly two months since Noelle died. I didn't realize it until just now-11:38 pm. The date just seems to slip away from me all the time. I was unusually restless today, wandering around from room to room not really knowing what to do. I guess I know the reason why.

I have spent the last hour watching videos of my family from last Christmas through February. I get so immersed in these videos while they are playing and then feel such a loss when they are done. The reality of done is truly a very difficult concept. Everything with the last three years (medicines, doctors/nurses, hospitals, clinics, disease, Noelle, etc.) is over.

I then have to remind myself again and again that done is only a concept on earth. Another truly difficult concept...

T

Sunday, November 25, 2007 11:23 PM CST

Please direct prayers for us instead to our friend Alexia, as she entered the PICU today. Her family is in the struggle for her life and she deserves to live. Prayers and thoughts to her today and all the days going forward....

www.caringbridge.com/southamerica/alexia

Monday, November 19, 2007 12:32 AM CST

WEDNESDAY NOVEMBER 21, 2007 3:34 pm

I have been meeting with a family friend, Father Melvin Michalski, who has been instructing me on the ways of being Catholic. I have begun these meetings as a committment to my family, my faith and my GOD. It is not so much about being Catholic that drives me, but more the feeling of a closeness to those of faith and for the ONE that we celebrate through our faith.

Today, our discussion led me to a discovery of Noelle's Lesson #4. Our discussion centered on the point at which Christ accepted His calling from God. Christ needed to accept that He would die in order to fulfill His true mission on earth. While He at times questioned what the true will of His father was, He emerged with the courage of the Lion to ACCEPT God's will for Him.

Acceptance: (noun) a disposition to tolerate or accept people or situations; the act of taking something that is offered. (source WordNEt).

There were many periods of weakness in our journey with Noelle, many times in which we did not feel we could take or accept the fate that had been bestowed on us. We felt pity and remorse for the possible eventual outcome for Noelle and it really could have led us down a destructive, loathing path.

There came these points where we were faced with acceptance or self-destruction. Really, that is truly the point at which you find your way or get lost. This point re-emerged at different times in her treatment and at different times down our road. At each point, we dug deep and accepted what needed to be done. Whether it be quit our job, or move our family across the country, or any of the many decisions we made, we accepted what needed to be done and began preparation for the task at hand.

Therein lies the heart of Noelle's next lesson. NOELLE'S LESSON #4: There are many points in life where we are faced with situations we can not control, but it is with acceptance of the gifts wrapped up in those situations we face that allow us to open ourselves to change and the ability to impact those around us.

Jesus inspires not only due to His divinity, but due to His desire to demonstrate His weakness and the frailty of His human form. If He can bear the weight of the world on His shoulders and accept the fate of His death for us, we can accept the calling to change our weaknesses and help those who feel weak in their lives.

Accepting Noelle's illness and her eventual frail human form, has allowed us to see the gifts around us. We are not stuck in pity for ourselves, but inspired by her ability to motivate and push us to help others. Moreso, we celebrate the fact that her short life has had the ability to inspire others in their lives.

Lord, we accept Your will for our family and give thanks to You for the many gifts wrapped up in our tragedy. We take away not the fears and pain, but the love and everlasting togetherness.

May you all find a way to accept your daily tasks and situations, and show the Lion's courage as you find ways to help the others in your life. May you also find things to be Thankful for in this week of Thanksgiving and that you share the gifts you have in life.

God's good graces to all of you.
Dave

NOELLE�S LESSON #1: Sunshine is so much brighter when it forces its way through the clouds.

NOELLE�S LESSON #2: Gifts in life can be seen and unseen.

NOELLE'S LESSON #3: The greatest and most influential force in the world is the compassionate, enduring concern of one human to another.

NOELLE�S LESSON #4: There are many points in life where we are faced with situations we can not control, but it is with acceptance of the gifts wrapped up in those situations we face that allow us to open ourselves to change and the ability to impact those around us.

MONDAY NOVEMBER 19, 2007 12:32 AM

With Thanksgiving here and Christmas on its way, I have been really thinking about what those seasons are all about. It is not the food, gifts, trees, garland, wreaths or all the shopping. It isn�t even totally about family and friends for me. I think it is mainly about being good Christians by loving your neighbor. Not that we should just do this during the holiday though.

Right now at this time in our life, it is so difficult to find things to be thankful for. I have been trying to come up with a list of things I have been thankful for these last few years, Here is just a glimpse at a few months in our lives last year.

It was a time of stress, sickness, exhaustion, emotions and hospitals but right now I concentrate on everything else that was going on. When I watch videos of those times, I see laughing, reading, rocking on the dragon rocker, playing and just doing things outside of the apartment. I can feel us at the planetarium watching the movie and hear Tessa and Noelle�s delight in the part of the movie containing black hole and how you would become spaghetti-fied if you got caught in it. I can see their expressions at the dinosaur exhibit in the museum. I can hear Noelle laughing at the big long neck and Tessa running from display to display of the different animals. I can picture us sitting at the small tables in the library reading book after book after book. I can see Tessa climbing up on Santa�s lap and me setting Noelle next to her only to have her climb down and get up on his lap herself. She was a big girl, you know. I can picture us at the I-Max with our 3-D glasses on watching the sea creatures float in front of us. I can see the girls reaching out to touch the magnificent fish swimming past. I also see us eat dinner at Maggiano�s on Christmas Eve. A time filled with so much excitement and wonder. When we left the restaurant, Tessa looked up into the sky and said she saw Santa�s sleigh and Noelle readily agreed. A couple walking passed us laughed. I also can see us sitting in our first movie, Happy Feet, as a family at a real theater. What an experience to see a movie on a big screen with so much sound and noise. Being from Wisconsin, I also have the strange sensation of being able to say we spent time at Jordan Lake playing in the sand during the late fall. I remember those horses and dinosaurs in their little hands digging and covering with the sand. Going to the zoo in November was an amazing time. The weather was perfect and it seemed that the animals were right there putting on a private show for us.

These are just a few activities that we have had the privilege to do in our life with our beautiful girls. We are truly thankful for all of the memories.

Tonya

P.S. I put a video in the links of Tessa and Noelle.....

Thursday, November 15, 2007 9:54 AM CST

Hello Everyone,

We have been hanging in there cycling through the grief process....crying one minute, angry the next, and then accepting. It is the most bizarre situation I have ever been in. Tessa has been whining more and more which is difficult to listen to. We started a box of notecards and write or draw a memory on it when we think of it. I never realized that such an activity would cause me so much pain. I still physically ache for my big girl and would give anything to hold her again. I know this is selfish and she is in a better place painfree.

The holidays are starting and we are trying to create some new traditions. We have literally had no traditions other than just being a family of four these last three Thanksgivings and Christmases. Noelle's first holidays were spent at Children's Hospital. Her next two were spent in North Carolina. This year will be our first one at our home as a family of three. Tessa and I starting browsing catalogs to start her Santa list. We kept finding things that Noelle would have loved. It made me angry and I wanted to scream, "Why weren't you in the catalogs last year, you dumb toys?" Tonight, Margaret Ann's Place will have a Thanksgiving Dinner for all of the families that go to support group there. I hope it helps us, especially Tessa. I told her this morning about it and she was excited to go see her new friends.

On a positive note, our time together has been wonderful. We have been busy spending time with some loving families/friends who we have gotten closer with these last 6 weeks. It is nice for all of us, especially Tessa. She needs other kids and not just adults.

Tonya

P.S. Please send prayers for another family from North Carolina who daughter died this week after an awesome batter with AML. Her name is Sherilyn and her website is www.caringbridge.org/nc/sherilyn. I don't know her personally but have emailed her mom a few times. Her sister also has had leukemia and is in remission. Sherilyn asked at one point why god wasn't taking her too heaven hinting that she wasn't a good enough person. I am happy that Sherilyn is now in heaven, happy and strong.

Wednesday, November 14, 2007 2:02 PM CST

Hello All,

Just a quick note to let you know we are all hanging in there.

Dave - recovering from a minor, elective surgery. Feeling Noelle's strength to help me ignore pain. Definately getting excited about my new job coming up Dec. 3rd.

Tonya - Taking care of me... :o) Thank you honey! Finishing thank you cards for all the generous contributions to Noelle's gift to Tessa!

Tessa - Enjoying school and her kitties. Playing soccer on Friday nights.

God Bless all!
Dave

PS. We wanted to give a very heartfelt thank you to all who donated to Tessa's education in Noelle's honor. I sent off a $13,000 check to her college account. Our financial advisor told us that $13,000 will be nearly $50,000 in 12 years, when Tessa goes to college. He said she should be set!!! God Bless you all in making Noelle's final gift to Tessa be such a strong reminder of the love for her! You are all angels!

Thursday, November 8, 2007 8:30 AM CST

REFLECTIVE JOURNAL

"Am I still a sister?" is the title of a book we received from Margaret Anne's Center (the author escapes me right now). More importantly, though, it is one of the first things Tessa uttered when she said goodbye to Noelle, the day she died.

Noelle's earthly form passing has definately bruised and battered our souls. Tessa's question looms large as we feel the loss of Noelle's smile, her splendid eyes and her joyous laugh.

For humans, it is quite difficult to realize and reflect on the fact that although Noelle's earthly form is gone, her energy and life force is still existent. It is in the way we love each other more deeply than ever. It is in the way that we see strangers more compassionately. It is in the way that we hold each other more tightly. It is in the lesson that Noelle taught us....

NOELLE'S LESSON #3: The greatest and most influential force in the world is the compassionate, enduring concern of one human to another.

In these terms, Noelle can never be lost to us. For, we loved her and she loved us with a vice grip of compassion. She changed us and we changed her more than anything else...and, this change contagiously spread to thousands of people.

It's funny, as I struggle the most, I look back to simple general psychology. My psych. classes and textbooks taught me that...perspective equals reality. The world is real to us individually; yet, our influence can change the perspective of another so greatly that we will always be a part of that person. Maybe we might not be physically together, but we are in the way we have changed and been a driving force of that other person.

So, Tessa, yes, you will always be a sister. Noelle is with you in all that you do; and, when the time is right, she will physically be with you again.

Lots of love every one,
Dave

THURSDAY UPDATE

Hello All,

Just a note to let you all know that we are all hanging in there.

Dave - I worked with HR and am in a new job, one that thrills me to death. I will be a behavior specialist / counselor at a brand new elementary school in town and will be reunited with a principal and many colleagues I have worked with in the past. I am so very happy with this placement. Thank you God for supervising this move!

Tonya - Hanging in these. She is busy getting our house back in order and doing thank you cards, lots and lots of thank you cards! Smiles. Tonya is going to take some time off of work and just get some time to herself. She is the one who gave up the most for our situation, as Noelle was her 24/7 job! She will be taking much needed rest!

T-Bird - Being a kid! Tessa is just being a kid. Yes, she grieves and is upset, but she is one of the most mature kids I have ever met. She brings us joy every day and spreads that joy to all she meets. School is going well. She loves it there. They love her there. Good fit. A funny story...I got a call from the school that Tessa had an earache. However, the secretary said that she didn't want to come home, that I should bring her some tylenol. When I got to school, the secretary said that Tessa came to the office, said very firmly that "I have an earache, but I don't want to go home. Just give me some Tylenol and send me back!" We both cracked up at that comment. Smiles.

Cats - Both cats are in for declawing and neutering/spaying today. Please hope it all goes well with the surgery...we don't need any complications for Tessa's sake. The cats are her buddies and a good reminder of Noelle (especially that little Figaro).

Bella - Sniffing people and chewing bones.

Well, gotta run. Lots of love.

Dave

Sunday, November 4, 2007 11:17 PM CST

Some days, I am left with nothing more than pseudo-feelings. I don't know how to feel today, nor have I the last few days. All I know is the lyrics of this song by Kenny Chesney keep tearing through my head. In a way it hurts, in a way it heals. I will say nothing more than these are the lyrics.....

Who You'd Be Today
by Kenny Chesney

Sunny days seem to hurt the most.
I wear the pain like a heavy coat.
I feel you everywhere I go.
I see your smile, I see your face,
I hear you laughin' in the rain.
I still can't believe you're gone.

It ain't fair: you died too young,
Like the story that had just begun,
But death tore the pages all away.
God knows how I miss you,
All the hell I've been through,
Just knowin' no-one could take your place.
An' sometimes I wonder,
Who'd you be today?

Would you see the world? Would you chase your dreams?
Settle down with a family,
I wonder what would you name your babies?
Some days the sky's so blue,
I feel like I can talk to you,
An' I know it might sound crazy.

It ain't fair: you died too young,
Like the story that had just begun,
But death tore the pages all away.
God knows how I miss you,
All the hell I've been through,
Just knowin' no-one could take your place.
An' sometimes I wonder,
Who you'd be today?

Today, today, today.
Today, today, today.

[Instrumental Break]

Sunny days seem to hurt the most.
I wear the pain like a heavy coat.
The only thing that gives me hope,
Is I know I'll see you again some day.

Some day, some day, some day.

God's Love,
Dave

WE MISS YOU BIG GIRL, REALLY BADLY!!!

Tuesday and Wednesday, 30th and 31st, 2007

Tuesday, October 30, 2007 10:11 PM CDT

Please pray for friends of ours in Tennessee. Noelle had her first transplant with a little girl named Kate. Kate had a transplant to overcome a metabolic disorder. Kate's older sister, Caroline, had that same disorder but her disease had progressed too far to have a transplant. The disorder is a degenerative one that literally takes the life out of one's self. Caroline died today with her family beside her. They are a tremendous family who fought every step of the way and remains strong. They have said that Caroline now "is released of her earthly circumstances". This statement brings tears to my eyes.

Today, I was blessed to attend a tree dedication ceremony in honor of Noelle at Providence Catholic School in Paris/Kenosha County. The children have sent numerous cards, done fundraisers and said millions of prayers for Noelle. They sang Jesus Loves me and You are My Sunshine around the tree today. One little boy said he was giving up playing at recess and now will sit in Noelle's shade of her tree.

We continue to surge forward with our lives. It is so difficult for us but we do it knowing that we must complete our mission in life. Sometimes, I feel that having Noelle and Tessa was my mission. I will follow through with Tessa just as I followed through with Noelle. We are so lucky to have her here in our lives.

As I am sitting here writing this, I just heard a splash. Noelle's kitten, Figaro, just fell into the bath and jumped out. So now, I am holding him wrapped in a towel. He is curious, mischievious and lovable just like Noelle. We find ourselves saying daily, "Is there any doubt that this is Noelle's kitten?" We are so thankful that Noelle was able to have the kitten she always wanted the last few months of her life.

Anyways, my bath water is getting cold. Now there is cat hair in it.....

Tonya

WEDNESDAY UPDATE

Noelle's first lesson to us was to see the good in life, no matter what. Her second lesson is intertwined so deeply with the first that it cannot by seen in isolation.

Noelle's lesson #2: GIFTS IN LIFE CAN BE SEEN AND UNSEEN.

I remember back to when I used to pray to "get" this or that. I asked for things such as to get a certain job, to find something I lost, for money, etc. I remember that the source of my prayer (the object, item or circumstance) then became the source of great anxiety and disappointment if I didn't get it.

This past week, I fell victim to this thinking again... I am in an awkward situation. It has been suggested to me that I resign my position at Hillcrest and take a less "challenging" position in KUSD for a while so that work can be less emtionally draining when I return. The way it has been presented and a few miscommunications have led to some bitterness and anxiety on my part. In fact, my heart has been lit with the flames of anger and resentment. And yet...why?

The more I reflect about the situation today, the more I am left with a feeling of my own weakness. There are definately two ways to look at it. Either with anger or with gratitude. Either...my employer has seemingly made my life a lot more challenging than it already was or my employer is trying to help ease my burden by making my transition more likely to succeed.

I think back fondly to Noelle's life for forbearance from my anger. Noelle always had a way of evoking the positive side of us. Her lessons and her life showed us that in the seemingly dark nights, there was light. So many examples of life's "unseen" gifts were made apparent by her strength and courage. Some of these examples include...

1. We were never alone. Although we felt isolated and weary in North Carolina, we always seemed to be supported by love. We sometimes forget all the calls, the letters, the care packages, the unbelievable selfless acts (such as the butterflies from my buddy Michael), and the many hits on this site.

2. While Noelle's body may not have survived, her spirit has inspired so many. I have received countless e-mails and messages about her poitive impact on others (impact that was not made known to us until recently). While we were going through the hard times, we had no idea that others were learning from us or Noelle.

3. Our faith (the greatest un-"see"-able gift of all) was blossoming and holding us together. Many times we felt forsaken by God, yet he was always there when we needed it. Quite literally, it felt as if our prayers were answered before they were even spoken. We were struggling for money for a while, then a bunch of money and donations would just show up. We were struggling with Noelle's side effects, then she would just have a great couple days or a week. We felt like giving up, but encouragement would just come from seemingly nowhere.

There are many, many examples of "unseen" gifts. I encourage you, like I have been trying so hard, to listen to Noelle's second lesson. When you are down and struggling, find gifts in your life that you never knew existed. And celebrate...celebrate...celebrate...those gifts. I know I am trying hard right now to see the gifts for what they are and be less presumptious and angry about what they "appear" to be...

Tessa and I have always said this line in our prayers each night, "Thank you God for the many gifts in our lives, both seen and unseen." I will try to live by my own words!

God Bless,
Dave

Tuesday, October 30, 2007 10:11 PM CDT

Please pray for friends of ours in Tennessee. Noelle had her first transplant with a little girl named Kate. Kate had a transplant to overcome a metabolic disorder. Kate's older sister, Caroline, had that same disorder but her disease had progressed too far to have a transplant. The disorder is a degenerative one that literally takes the life out of one's self. Caroline died today with her family beside her. They are a tremendous family who fought every step of the way and remains strong. They have said that Caroline now "is released of her earthly circumstances". This statement brings tears to my eyes.

Today, I was blessed to attend a tree dedication ceremony in honor of Noelle at Providence Catholic School in Paris/Kenosha County. The children have sent numerous cards, done fundraisers and said millions of prayers for Noelle. They sang Jesus Loves me and You are My Sunshine around the tree today. One little boy said he was giving up playing at recess and now will sit in Noelle's shade of her tree.

We continue to surge forward with our lives. It is so difficult for us but we do it knowing that we must complete our mission in life. Sometimes, I feel that having Noelle and Tessa was my mission. I will follow through with Tessa just as I followed through with Noelle. We are so lucky to have her here in our lives.

As I am sitting here writing this, I just heard a splash. Noelle's kitten, Figaro, just fell into the bath and jumped out. So now, I am holding him wrapped in a towel. He is curious, mischievious and lovable just like Noelle. We find ourselves saying daily, "Is there any doubt that this is Noelle's kitten?" We are so thankful that Noelle was able to have the kitten she always wanted the last few months of her life.

Anyways, my bath water is getting cold. Now there is cat hair in it.....

Tonya

Friday, October 26, 2007 10:42 AM CDT

Please PRAY and send POSITIVE THOUGHTS to our dear friend, ALEXIA. She relapsed one week before Noelle this past August. She is having some difficult times and this horrific disease has taken its toll. Alexia and Noelle had their second transplants a few weeks apart. I will never forget them running down the hall together in the hospital. I will never forget them hugging good-bye one last time before we left to come home to Wisconsin. If you would like to visit their site, I have linked it below.

Tonya

SATURDAY UPDATE---Exactly ONE month since Noelle left us......10/27/07

Page two is written...However, each page is slow and heartfelt at this time. I hope to move a lot faster when I heal more and more. Noelle's story needs to be told, and we need to tell it. Seems silly, but sharing my progress on the pages seems to be a way I can honor Noelle each day.

FRIDAY

Hello All,

This morning, Tonya and I began the healing process. We went over to the Margaret Anne Center (a center for grieving children and their families) and enrolled our family into support groups. Tessa will be in a child-only group and Tonya and I will be in a parents' group. We also received many materials to read and use to help heal.

The meeting was both a relief and a difficult situation. We are glad that Tessa and the both of us will have a place to go to share and reflect with other families who have also lost a child. It comforts us to know that we will not only be able to release our many feelings of anger, loss, fear, anxiety, but also to share in healing, peace, love and togetherness with others like us.

We are very fearful about the feelings being poured out. Our wounds are so fresh and we do all we can just to make it each day. Talking, in public, about those feelings will be hard. Usually, we just hide in our office and pour out our feelings to our friends, family and supporters online. We cry and reflect in a silent, non-judgemental forum. Now, though, we will be with others and that is a bit scary. We are so grateful for the support, though, and look forward to joining this group.

I just want to reiterate how grateful we are for all of you. You have been our support these many years and I have realized that writing this journal has helped me heal all through the process. I joke that this is my therapy...but, truly it is. You have all been so kind and generous with your comments and support, and it has shown me reason to continue on each day.

I will continue to write until you all continue not to read. I wanted to start a new thing. Noelle taught me so many lessons and I would like to share the many lessons in an on-going reflection. It will be called Noelle's Lessons and everytime I write, I will include another one. I encourage everyone to do what I am going to do. Each time I write or read one of her lessons, I am going to try very hard to live that lesson for the following couple of days or a week. I figure if I can begin to live her lessons each day...they will become automatic and will continue to change me for the better. So, here goes...

Noelle's Lessons #1: Noelle lived each day in pain and each day as a struggle. However, she never complained about it or felt bad for herself. So, the first thing she taught me was.... SUNSHINE IS SO MUCH BRIGHTER WHEN IT FORCES ITS WAY THROUGH THE CLOUDS.

I will try hard, Noelle, to see the sunshine through the clouds. I will try to think less of my problems and more of my blessings. I promise you to look for that sunshine even on the darkest days.

I encourage each of you to see the good through the bad and to count your blessings. I know it is the first thing that we learned from her and that it is the most important thing.

I will at times not be able to do this. At times, I will feel down and sorry for myself and for our family and for our loss. I will at times need to vent MY frustrations through this site and in other ways. However, that does not make me a bad person. It makes me a person who hurts for their daughter. I will, though, try so hard to see all that I have in this world. Noelle would like that!

With so much love and many of God's blessings,
Dave

Thursday, October 25, 2007 2:23 PM CDT

Thank you all for your kind words and coming to our defense to an interesting guestbook entry. Please, however, do not feel the need to respond to people who are not...well, let's just say are undersupportive. I will never call those people out by name, as they certainly have the right to any opinion they want. Just so all our true supporters know, we simply erase those messages and don't give it another thought. We have erased that message and will just simply erase any other like it, so no response is necessary from you all...but thanks!

I truly and honestly feel as Noelle taught us...do the best that you can, express yourself in how you need to, and always think of others first. We have done that and are secure in that. We will never question that.

Noelle, as you shine down your glorious light today (tons of sun!), please know that as your daddy I am truly blessed to have had you. I miss you every day and count the minutes until we are together. I know you would want us to be strong, like you were, and that you would want us to keep living each day. It is hard, but with your watching over us, we will heal. We love and miss you more than anything else in the world.

Take care my BIG girl and know that you will never be forgotten.

With so much love,
Dave

PS. Thank you all for your continued support. God Bless

Tuesday, October 23, 2007 0:59 AM CDT

My mind and heart are dark with grief. These are the images that come to my head and shade my soul..............

They keep on asking,
but I don't have the heart to say...
I can't go on,
with life this way...
On the outside, looking in,
I can't even, stay inside my skin...
Losing you, shattered my soul,
It hurts more, than they could know...
Every day, I try to breathe,
but all my senses are out on leave...
Begging God to take my pain,
everytime I think your name...
Wishing I could hold you tight,
if only for one single night...
Nothing here will bring you back,
Cancer's beasts, successful attack...
And now I am supposed to continue, how?
Lost in purpose, lost in the now...
Hoping that I'll find a way,
to see my life, be fixed some day...
For now, I float and can't come down,
Senses shattered, my broken crown...
Life's locked the door and thrown the key,
hoping God will rescue me...
Take me home to be with you,
I don't know, what I can do...
We gave up all, to keep you here,
but that did nothing to keep you near...
Failed in love, in sanity,
hoping you can forgive me...
I would give it all, to try again,
maybe there's something that wasn't done...
Please forgive, I need to know,
that you know I love you so...
Someday I hope, we get the chance,
to see you jump, and skip and dance...
Not much comfort, not much joy,
we are at His whim, His earthly toy...
Losing faith, when needed most,
chewing on life's bitter toast...

tired and sad...Dave

Friday, October 19, 2007 8:57 PM CDT

Hello All,

1 million hits...wow! We are overwhelmed by the support Noelle continues to gather for our family. To let you all know...the night that we got 1 million hits, I wrote one page of the book. I have officially started the book! Now, if I can just write 200 or so more, we will be in good shape. Actually, I intend to incorporate many of the journal entries I have made over the years and weave them into a "lessons learned from Noelle," kind of story. There will be enough new to encourage you all to buy, though....smiles.

Truly and honestly, if I never get the book published, that would be ok too. We just want to write a memorial to Noelle by highlighting all that she has taught us and given to us so that we never forget what we have learned. If it so happens to get published...well, that would just be an extra blessing.

Does anyone happen to know a publisher? Smiles!!!

Well, lots of love...and have a great weekend.

Dave

Tuesday, October 16, 2007 0:31 AM CDT

re�spon�si�bil�i�ty
noun
1. the social force that binds you to the courses of action demanded by that force (from Wordnet)

Through tears and fears, we have continued to go on with each day. Today, Tonya and I went to the blood center and gave blood. Noelle had received hundreds of platelet and white and red cell transfusions. To honor our daughter, we gave back like the anonymous donors who helped sustain Noelle's life. We gave back by becoming those same donors and committing to be regular blood donors.

While giving blood, I thought of Noelle and how she continues to teach us, even from heaven. Noelle taught us many things. We have talked about her teaching us to live each day to the fullest, to try our hardest at all times, to honor and love our family, to be faithful, etc. However, today I really got a crystallized image of what Noelle gave to me. Her gift to me was a deep and ever lasting RESPONSIBILITY.

I love the definition that Wordnet used for responsibility. According to them, responsibility is "the social force that binds you to the courses of action demanded by that force."

We are all fluid parts of a greater social, Christian community. Prior to Noelle, I had no idea what that meant. I used to coach soccer, did so for many seasons. I coached kids, JV, Varsity, indoor/outdoor...you name it. Each day when I would come home from practice, I would relax and unload. I didn't really run to the kids, I didn't really pick up any responsibility at home, I didn't really feel the need to help at all. I used to tell myself that I had a job and coached and my wife stayed at home or just had a job. I used to tell myself it was her responsibility to take care of the kids. Her job was the house. Her job was dinner, raising the kids, and taking care of things so I could work and coach. I even told her I would need a couple days advanced notice for the days she needed me to get up in the morning and take care of my own daughter, since I worked so hard each day and needed my sleep.

Then, Noelle came along. She enlightened me to the awesome force of responsibility. My good, good friend Mary Hawkins often would tell me "to whom much is given, much is expected." I never applied those words to myself, until Noelle.

Noelle taught me to be a good father. She taught me that my responsibility was to love my children, teach them the way to live as responsible and kind people, to be there with them in every hour of need, and to always support them no matter what happened. Noelle also taught me that my responsibility to my wife was to nurture our marriage, to be the best man I can be to her, to love and support her unconditionally, and to honor my vows 'till death do us part. Noelle taught me that we are just a small part of a large community of people. She taught me that my responsibility was to make the world a better place, to be kind and generous to others, to reach out to those in need and take the help they offer to me, to smile, show I care and always be there to support those in need. Noelle taught me that my responsibility is to my Christian faith. She showed me how to love my God, how to appreciate what He has given, and not complain about what I don't have. She opened my eyes to my responsibility to demonstrate my acceptance of His Will, open my heart to finding His gifts and share my awareness of these gifts with others.

It hurts me to know that Noelle is not around to continue to teach me these things. It is as if she were as much my teacher, as my child. I was granted 3 and 1/2 years of moral guidance from a brilliant and unique child; and, I am a stronger, more involved, more loving person for it.

Noelle, thank you for teaching me a Responsibility beyond what I thought was imaginable. We think of you so much, our sweet, sweet Big Girl! We miss you and will always hold you in our hearts, next to our very souls. I hope you have been able to try out your dancing and running legs and that your beautiful hair flows gently in each breeze.

Love,
Dave / Daddy

PS. I was told by many people to watch for "signs" that Noelle is still guiding and loving us. I didn't believe it when people said that we would see these signs. However, in the last two weeks, we have been shocked by her presence. When we went to fly kites, a giant hawk (unlike any I had ever seen), appeared seemingly out of nowhere. The hawk swooped right next to the kite, spread its magnificent wings, and disappered so quickly we had no idea where it went (and we were in an open field). Another hawk, swooped right down past us at St. Mary's school as we walked to the clothes resale. It swooped in low, looked back at us, and disappeared the same way the one did by the kite. Hawks were our symbol of hope. We had seen very few until Noelle got sick. Then, they seemed to be everywhere we were.

Another, chill the bones thing happened last night. While I was standing in the living room, talking to Tonya, the MP3 player on my cell phone turned itself on. The song "Behind the Clouds" began to play on its own. I didn't even have the phone out, it was in my pocket. I looked at the clock and it was almost 10:00 pm. Each night when Noelle would wake up between 9:30 and 10:00 pm, she wanted to dance to her song... "Behind the Clouds." We were shocked. I immediately picked up her travel urn and danced with it. Thank you for that dance my Big Girl!

Noelle's energy abounds and we are thankful for it.

Monday, October 15, 2007 1:39 AM CDT

Hello All,

We are hanging in there the best that we can. We have smiled a tiny bit this weekend, but routines are hard as they were so filled with Noelle's presence.

I just wanted to let you all know we are still here and that I will be posting more tomorrow (some reflections on our journey this last few weeks).

Tessa is ok. She is in a lot of pain, but we are thankful for friends and family who help keep her busy. A big, big thank you to the Jerry family for your hospitality on Friday. It was a night we all needed!

Thank you all for continuing to help Tessa's college fund. She is now over $12,000! Thank you for helping honor Noelle's name by securing Tessa's future. We will meet with our financial adviser to set up an account that should grow well in the next 12 years. Wouldn't it be great if the investments meant that she had her whole school paid for! Noelle would love that!!!!!!!!!

Also, thank you for showing how much you all still care about us. Nearing that 1,000,000 mark. Noelle would love that too! I know we feel the love and it helps sustain us in our weary hours.

So much love and gratitude,
Dave

Wednesday, October 10, 2007 10:46 PM CDT

My dearest Noelle,

It has been 2 weeks since this nightmare happened and I feel like I am reliving it tonight. I have been watching the clock and narrating what happened then wondering what I could have done differently. I remember at 3am sitting on the bedroom floor while you were on the potty chair. I was reliving the Winnie the Pooh ride with you. We were telling each other the details of the ride room by room. You were feeling sick but okay. Little did I know that that would be one of the last few things we said to one another.

These last couple days have been so hard. Everywhere I turn is a vivid memory of you. I found your candy necklace under your car seat on Monday and each detail of the day you bought it came back. I find myself saying �Noelle would have liked this� or �remember when Noelle did this� over and over. I am probably torturing daddy but I can�t stop. I need to say your name.

My body aches for you. I miss you so, so much. I carried you everywhere and even held you most of the night while you slept. My ribs still hurt from where you slept.

Everyone tells me that I am so strong. It was you who taught me to be strong. You are my hero. I am so proud to be called your mama and would relive these last 3 � years over in a heart beat if given the choice. I love you more than words can say. Thank you for coming into my life.

Mama

Tuesday, October 9, 2007 0:03 AM CDT

Hello All,

We had a...distracting time...this weekend at the Kalahari Resort in Wisconsin Dells. I can not use the word fun, although there were moments of joy made in our "new" life. We spent a whole weekend with Tessa, nourishing her sense of belonging with her parents, for the first time in 3 and a half years. I am glad that we were able to provide her with what she said was a great weekend.

She has missed so much time with us. At times, she was a forgotten member of our family. She often went without both her parents and her sister, as we logged many hours away at clinic and the hospital. And althought she had super grandparents to keep an eye on her, she longed for mommy and daddy. So, this weekend, we gave her all of our undivided attention.

Tessa's strength and resilience during the weekend and in the last two weeks has amazed us. She keeps going on...she has her moments, as we all do, but keeps going on. She did really, really love her sister, though, and you can tell she does have a lot of hurt. On Friday night, we went to eat at a Pizza place. Tessa was allowed to make her own pizza and she did so with Noelle in her heart. She made half of the pizza with sauce and cheese and the other half with just cheese. When asked why she did this, she sweetly said, "Noelle didn't like sauce, so I made half without sauce for her." All three of us cried during that meal :o(

Life was hard today! We woke up and Tonya drove Tessa to school. When she returned, an unbelievable empty feeling overwhelmed us. We both were in the dumps all day. We wish we could wake up from this surreal dream. We MISS YOU SO MUCH BIG GIRL! We just don't feel right. The hardest part is that it hurts so much to think about Noelle and our loss, but it hurts just as hard to look at pictures and videos of her. We are in a void, where nothing can heal our hurt. My stomach hurts all day. I am nauseaus and weak. I feel like crawling in a hole and not emerging until the world is right again. I just don't think it will be right again. How can it? Our family is cracked. It is missing a piece that will never return. A jigsaw of pain.

We did experience an incredible moment today, despite our hurt. We had the pleasure of opening all of the memorial gifts written to Tessa. In advance of telling you how much was raised, we all wanted to say a huge, very heartfelt thank you for honoring our last wish for Noelle. We had asked for any donations to our family to be made to Tessa in honor of her sister, Noelle, so that Tessa might have an education fund. We just so believe that Noelle would have loved to be able to give her sister a final gift, and an education is something that will impact Tessa forever. Well, our wish was granted thanks to the generosity of those in attendance at the funeral and those who could not make it, but who sent there generosity through the mail or other means.

Noelle's final gift to Tessa was just over $11,000 (in memorial gifts). We were so shocked! Thank you all for being the generous medium of this incredible tribute from Noelle to Tessa. All of Tessa's sacrifices over the last 3 plus years have been rewarded with the guarantee of an education!!! We can't thank you all enough...I have huge tears as I express our gratitude.

With so much love and gratitude,
Dave

PS Remember what Noelle would have you do...Fight everyday battles with all that you have to give...and fight your extreme battles with the help of those around you!

Friday, October 5, 2007 0:16 AM CDT

As she did in life, Noelle inspired so much love and support tonight at her funeral/memorial. The funeral director said it was one of the biggest funerals he had ever done (in 18 years of doing it!). We estimated 600 or so people showed up to show Big Girl their support.

Although there were tears of grief and loss, there were so many tears of happiness at the inspiration she was and will always be... The service was an unbelievable tribute to our BIG Girl and we are deeply grateful to all in attendance. We are especially grateful to the Sturino-Hanson Funeral Home, as well as Father Melvin Michalski and Father Don Thimm.

We thank you so much for telling us the many ways Noelle has touched and inspired each of you...Actually, we want to ask you all a favor. Can you please either sign in the guestbook or email us the way in which Noelle has touched or inspired your life? Whether it be to live each day for what it is or to change parts of you own self or whatever reason... We really want to look at publishing Noelle's story and would love to have a chapter or addendum on the ways in which Noelle inspired others.

Once again, thank you all for your continued and unbelievable support! We are who we are today because of the unending support we received!!!

I have made a promise to multiple people that we would keep updating weekly (at least for 6 months) to let you all know how we (Tessa especially) are doing. We thank you for always reading up on us and for your deep care and concern.

With so much love and gratitude,
Dave

PS. When the website reaches 1,000,000 hits, I will begin to write Noelle's story to be submitted for print. 1,000,000 hits will indicate to us that there is an audience for our story and will give me the strength I need to re-visit Noelle's entire journey.

God Bless!

Monday, October 1, 2007 3:06 PM CDT

Dear Noelle,

We are thinking of you today, as always!!! I just snuggled your black kitty stuffed animal a while ago and watched some Dragon Tales with her, like you would have wanted. Our hearts are empty without you, but we know you are in eternal bliss. We count the days until we share that feeling with you!

Love,
Daddy Kitty

To All of Noelle's Supporters,

The services for Noelle will be as follows...

Noelle's Service will be held on October 4, 2007 (Thursday). A memorial visitation will be from 4-7 pm with a memorial mass at 7 pm. All services will be at St. Anne's Church (9091 Prairie Ridge Blvd. Pleasant Prairie, WI). Generous support for the event is provided by the Sturino Hanson Funeral Home (God Bless you!).

As you loved her in life, please help us celebrate her in her passing into eternal life. If you can only come for a short while, we would love to have you for the memorial mass. If you can't make it to that, any time from 4-7 we would love to have you. If you can't make it to that, we would appreciate prayers at 7:00 pm, so she can feel your love. We want her to know how much support she really had in life.

Many people have been asking about how they can support us during this time. Our family asks that any memorial donations you have to offer come to Tessa Naylor, Noelle's sister, to set up a school fund for her. We want Noelle to be able to help her sister in one last way and by donations being made to her, Noelle can ensure Tessa gets a quality education (opening many doors in life to her).

Our address is:
Tessa Naylor
7514 - 23rd Ave.
Kenosha, WI 53143

We thank you for your unending love and devotion to our family and we are forever grateful for the lessons you all taught us about helping others, being generous and freely showing love.

In God's Name,
The Naylors (Dave, Tonya, Tessa, and NOELLE).

MEOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thursday, September 27, 2007 4:45 PM CDT

Saturday, September 29

My dear sweet BIG Girl,

Hi. Meow. It's daddy kitty again. I keep thinking of the last two days we spent together and how much love I felt for you. Wednesday, when I came home from work, you told me that you were just so, so tired. And you and I laid down together in bed and spent the next three hours drifting in and out of sleep. During that time, you told me how much you loved me and you snuggled me close. We spent three unbelievable hours together.

The next morning, I was so scared when I saw how hard it was for you to even sit up. You said you were so, so sick and that you just didn't feel right. You tried to be happy, but you knew that your body wasn't working. When we took you to the hospital, you looked so sad, but you tried to be a STRONG, BIG GIRL. You even kept telling them that you had to go potty and needed your potty chair.

I held you until they told me I could no longer. You looked at me one last time and stared so deeply into my eyes. I knew by your last look at me that you loved me so much. And you knew that I loved you so much too.

They did not allow me to go in the ambulance with you to Children's. I had to come a little while later. When mommy called me and said you were doing very poorly, I raced and raced to get to you. You held on for me. You kept breathing and going so that I could be by your side.

Noelle, you did everything right in this world. You tried your best to always be the best BIG girl you could for us. The last two days of your life (and all of your life), you gave me so much love to hold in my heart.

I wanted to thank you for your constant strength and courage. I wanted to say thank you for all the love you gave and for comforting us, when you were most sick. I wanted to thank you for holding on so that I could be with you.

I love you so intensely and haven't stopped crying since you left us. But the gift of your love reminds me that it was not the pain you had that we will remember, but the love you gave. It was not the hospitals, nor the medicines, nor the struggles you had that will remain with us. It is your sweet voice, your incredibly intelligent manner, your love, your courage, your beauty, your unbelievable smile, your laugh, your humor, and all that made you YOU!

Please always remember that we love you and that we WILL see you again.

With all the love a father can give,
Your Daddy Kitty....Meow.

Friday, September 28

Dave and I visited Noelle for the last time today. These last three years have been difficult but these last 48 hours have been horrific. Never in a million years did I think that we would be leaving the hospital without her yesterday. I rode in the ambulance from Kenosha to Milwaukee and Dave stopped home to get a suitcase for the three of us. We knew our Noelle and she always pulled through for us. Why should it be any different this time? We are thankful that she didn't have a long drawn out death but we are not comforted by this fact. Maybe some day......We miss her terribly as I am sure you can imagine. I especially miss my buddy who sat on my lap or whom I carried 90 percent of the day. The last week was so, so good with her. She was so happy and did things that she hasn't done in 6 months. Thank God I had my video camera to record some of these moments. The real kicker is that the new medicine (GMCSF) was working. Her blasts went from 25 percent to 8 percent in two days.

Below I have included the service arrangements. We would be so honored to have you there with us.

Noelle's Service will be held on October 4, 2007 (Thursday). A memorial visitation will be from 4-7pm with a memorial mass at 7. All services will be at St. Anne's Church (9091 Prairie Ridge Blvd. Pleasant Prairie, WI).

Please note that Noelle will be cremated earlier in the week so there will not be a viewing.

Wednesday, September 26

Noelle Claire Naylor burst into this life on April 1st with only 15 minutes of labor. She was a beautiful, intelligent, spit-fire girl.

Just as quickly as she came into this life, she suddenly left today at 3:25pm. Bacteria overtook her body in less than one hour and sent her into septic shock. We tried for 6 hours to get her back to us but all our efforts didn't work. All her organs shut down quickly and she is now gone.

It was two days ago that she told me she didn't want to go to heaven and be an angel. She said she wanted to stay with us forever.

We are heartbroken and deeply, deeply shocked.

Tonya, Dave and Tessa

_______________________________________

My Dear, Sweet BIG Girl,

Tonight is the first night we are trying to sleep without you. We are home, but you are not with us. I am tyring and trying to sleep, but I just can't. My heart is shattered without you next to it.

I just can't be without you. These words keep going through my head...."I'll have a blue, blue Christmas without you. I'll be so blue, blue thinking about you..." But really it should be "We'll have a blue, blue Life without out you...We'll be so blue, blue Always thinking about you..."

I can't breathe.

I just keep thinking that we could have done more. Maybe we waited too long to take you to the hospital. Would you still be here is we went a couple of hours sooner? I hope we did not fail you. I am so, so, so sorry.

When you came into this world, we were so overjoyed. You had the most incredible dark hair and unbelievable smile. Now, all I can do is think of that smile and hope that memory never fades.

I can't wait to see you again. I don't know if I can make it until I go to heaven. I feel as if the judge just sentenced me to life in prison. My heart is caged now and may never be free.

You were the most sweet BIG Girl. You tried so hard to always be Happy, even through all the pain this world brought to you. I know now that your pain is gone and that you are in heaven where you deserve to be.

You used to say to me "Daddy, I just want to run," and that you wished you had "long hair." Well, darling, I am sure you are running right now and jumping with your beautiful dark, long hair.

Please know Noelle that you meant and continue to mean so very much to us and that our hearts will never be full without you.

We were there, holding you, when you took your last earthly breath. And we know that when we take our last breath, you will be there with us.

With intense longing to see you again, I pray. I pray that God holds you tightly and allows you to have all that this world could not give you. I pray that you may run and jump and play with the angels completely pain free. I pray that you show off your long, long beautiful hair.

We miss you and will always love you so very much. We are so, so grateful for every moment we had and just feel so, so sad that we have you no longer.

Until we are together again,
Your loving Daddy Kitty

Tuesday, September 25, 2007 11:02 PM CDT

Counts were up again today. Entering the first phase of our clinical trial medicines. We have truly moved to "God help her" stage. A miracle is now what we need.

Dave

Tuesday, September 25, 2007 0:17 AM CDT

Big counts today...

If Noelle's blasts have gone down or stayed about the same, we will not be trying anything new. If, however, her blasts have gone up, then into the clinical trials medicines we go.

Here's hoping for low counts!

Dave

Sunday, September 23, 2007 11:35 PM CDT

Noelle had a very good weekend. She has been in a super mood and she continues to make positive steps. She has begun walking again and is jabbering away. Her sleep has improved and she seems to be happier in general. We don't understand it. Her blast count is the highest it has been in nearly a month (21 percent), but she seems the best she has in that month...Go Figure.

We are hoping not to have to try the GMCSF on Tuesday, but will if she continues to show blast increases.

I just continue to ask that God helps us through all of this... Tessa has begun to act a bit out of control again. You can see that the stress is really affecting her mood. She is sick a lot (cough that won't go away) and has been angry quite a bit. We try our best to help her, but she often just asks to "be alone." It may be time to look for a counselor.

Tonya and I continue to struggle with the fact that our daughter could be dying of an awful, awful disease. We will try everything we can to keep her here, but we have just seen too many kids die. We don't know how to continue handling this...but do so for the kids. We cry a lot, but put on a happy face. What more can we do?

May God bring you all peace in the upcoming week,
Dave

Friday, September 21, 2007 9:22 PM CDT

Noelle returned home to our precious family yesterday after a little pushing from her mom. We do not know the cause of the fevers and probably never will. Her counts have continued to rise and there were 21 percent blasts today. Our little hope that we had these last few weeks has shattered our hearts once again. I did't know my heart could break so, so many times. All I know is the devotion I feel for my two girls and husband will never end.

We will do one more blood count next Tuesday and then move to the first clinical trial. So far, her body has held the blasts off on its own. We were hoping ...... well you know.

Tonya

Thursday, September 20, 2007 0:08 AM CDT

Hello All,

Request for prayers...
Noelle is in the hospital. She began having fevers in the 102 range and throwing up blood chunks last night. The doctor is not sure what it is. It could be GVH, maybe a virus or bacteria, or a fungus. We don't know.

Pray please that her body recovers quickly and that she continues to hold down those blasts without any support needed.

Counts today looked better. WBC 1.3, HG 9.5, Platelets 88, Blasts 9 percent.

Thank you all and God Bless
Dave

Monday, September 17, 2007 11:24 PM CDT

Hello All,

I apologize for the continued silence on Noelle's condition and the lack of updates. I know it is hard, being fans of Noelle and concerned for her welfare, to be in the dark about her progress. However, we just don't know what is going on in her body. So far, she has required no medical intervention to keep her blasts down.

Well, today, Noelle's counts are Hemoglobin 10.5, platelets 22, WBC 1.8 and a blast count of 12 percent. The blast count has fluctuated between 2 percent and 30 percent, so the 12 percent shouldn't concern us much, especially with a low WBC. However, we are a bit discouraged that Noelle's counts don't continue to go down. She had dropped from 30 percent blasts all the way down to 3 percent and we hoped that might have meant she was going towards a self-induced remission.

Dr. Margolis was actually even optimistic last week about Noelle's chances to get to a remission. However, the counts today put a bit of a detour in our way. Now, this is just one count. However, we know how AML is and one steep increase could be followed by another and another and ....well, you get the picture.

Most of all, though, we are just exhausted. Never in life have I so much felt a need to take a "vacation" from my own existence. Emotionally, I hear things and take them in, but just don't feel them any more. I want to be happy and want to smile, not just a faked half-smile, but a genuine, "I am happy to be alive" smile. I wait for the return of some normal fluctuation in mood, but it just doesn't come. I am either in a false-happy state or very cranky. It's an uneasy feeling when you stand next to yourself and see only an empty soul.

I have asked God over and over a simple, yet reasonable question. If Jesus was sent to Earth to sacrifice for his people, why can a parent, like myself, not accept the same sacrifice? I have prayed for the ability to bear the cross for my daughter, but get no response. I ask you Lord, in front of all these witnesses, why do you not allow your people to give of their life what you gave of yours? Why will you not allow me to substitute my own life and sacrifice for my child? Would that not be what you would want? Does it not please you that one would give their life for another? Is that not the lesson you taught us? I will continue to accept your will for us, but do so with shaken conviction. For our souls are weary in our service to You.

Unbelievably heartbroken,
Dave

Thursday, September 13, 2007 1:53 PM CDT

I wanted to wish my darling first baby a very happy birthday (a little early). Tomorrow, Tessa turns six. I can't believe it. She has experienced so much in her short life already and is such a strong, kind human being. Her birthday wish is to get an American Girl doll so tomorrow the four of us will venture to Chicago for an overnight. We are all excited but most especially Tessa.

T

Sunday, September 9, 2007 6:46 PM CDT

The video says it all....

Tuesday, September 4, 2007 0:31 AM CDT

Hi,

We had a very good labor day weekend and were overjoyed by some of our experiences. Tonya was able to take Noelle and Tessa to the Walworth County Fair and they loved it. They saw many animals, went on some rides, ate fair food, and played in a giant sandbox filled with corn. Sunday, we went to WoofStock, which was also very fun. We got lots of treats for our pets and got to go on some bouncy rides. Noelle got a bit sleepy and took a nap, but she seemed to have fun. Uncle Chris and Aunt Jen came to visit and we went to fly kites at the park with them and Doak. Monday, Amy, Patrick, Grace and James came to visit. Fun, fun, fun.

Work last week was nice, but long. I had to put in a bunch of extra hours to catch up, but it was a good distraction for me. Tonya worked hard keeping Noelle healthy and happy. Noelle has had low grade temperatures and continues to be smouldering as far as cancer counts. She had 1.5 WBC (1500) with 17 percent blasts. These counts have been basically unchanged for the last month. What it means is that she is not getting worse, but not better either. She is in a holding pattern. The good news, is that she has gone a month without the need for any intervention. The longer we can hold off with nasty medicines, the better!!!

Well, hope you all had a blessed, long weekend!

Dave

Monday, August 27, 2007 11:35 PM CDT

Hello All,

Sorry about the delay in updating. We have been busy, busy, busy. Tessa starts school tomorrow and we met with and talked to the staff at Children's this weekend.

As for Disney...Wow! It was every bit as magical as we had hoped. This time, we did Disney Noelle's way. She loves the characters, not the princesses. So...we met nearly every non-princess character ever created. We went to 4 character meals including meeting, Mickey, Minnie, Pluto, Goofey, Jojo, Goliath, June and Leo (from Little Einsteins), a special meeting with Quincy (Noelle's favorite Little Einstein) that included an autographed Quincy doll, Chip and Dale, Donald Duck, Winnie the Pooh, Tigger, Eeyore and Piglet. We loved every minute and it was so nice to see Noelle smile. She smiled nearly every minute of the trip!

As to her health...Noelle is putting up a great fight. Her body has developed very good Lymphocyte reaction to the blasts. She is at only 1.8 WBC, with 16 percent blasts. However, her blast count is down from 30 percent, so she is doing a good job. She complains of pain often, but it is being managed. She has a lot of great times, and smiles and gives hugs freely. Tomorrow, we meet with Dr. Margolis to come up with a plan. He has agreed to treat her some more and refuses to call her terminal. He wants to try several drugs that are in clinical trials right now...which makes us happy. One drug causes blasts to start to "behave" and has been shown to put high risk AML into remission in some cases, as well as buy as much as several years of extra time. We are hopeful, but realistic. It is a clinical trial medicine.

As to Tessa...She starts school tomorrow at St. Mary's. She is so excited. Today, she had a K screening and we went to Open House. She did so well. We are so proud of our T-Bird for having endured through all of this. Her teacher to be, Mrs. Scopp, is very nice and supportive. She said Tessa was ready for K and that her skills showed no weaknesses. Yeah!

As to Tonya and I...We are hanging in there. We cry a lot, try to put on a game face, and go about trying to do all we can to ensure the survival of our baby! We won't ever give up!

Much love to all, and I will keep new pictures coming every couple of days.

God's Blessings,
Dave

Saturday, August 18, 2007 10:34 PM CDT

Dear All,

I wish I could find the words to adequately describe our unbelievable feeling after today's party. It was a "magical" day that couldn't have gone any better. I can not believe how much love and support there is for our sweet daughter. People drove in from hours away to celebrate with us. We got to see family and friends and meet a lot of supporters we had not been able to previously meet. We were very touched and extremely overwhelmed by the love shown to our family.

If we could bottle the love we felt and give it to Noelle, we just know she would be cured! The butterfly release truly summed up the day and our strong little girl.

I wish I could say more, but tears of gratitude keep clouding my vision and I just can't see the screen :o)

All we can say is...we are deeply grateful, thankful to God for the beautiful presence at our party and so touched by your support.

Three years ago, we never would have imagined you all would stick so closely by us and hold us up so high. We could not have made it to this party without all the support you have given us, and we will be forever changed and grateful.

With so much love!!!
Dave, Tonya, Tessa and Noelle Naylor

PS Pictures of the event today and the Disney trip will be posted next weekend. Sorry for the wait to see the party, but our computer is not hooked up yet (I am borrowing a friends).

Thursday, August 16, 2007 0:42 AM CDT

SATURDAY BASH!!!!!

Please remember our big welcome home party is scheduled for this Saturday (August 18th) from 9 am until we drop (sometime into the evening). We would love for a VERY BIG turnout and want to see all our friends and supporters. Here is your chance to see Noelle or meet her for the first time. Come meet the girl who has inspired strength in many!

PARTY DETAILS...
What: Noelle's Celebration of Life Event
When: Saturday, August 18th from 9:00 am until into the
evening.
Where: The Pawlowski Residence
2515 - 136th Ave, Kenosha, WI 53144
(Directions to the Pawlowski Residence...
Take I-94, exit hwy 142 by Mar's Cheese castle, go west on 142, turn left on UE, it will be the third house on the left. Parking is available just south of the house.)
Contact Dave at (262) 945-9538 if you get lost or need assistance.

Who's Invited: Anyone and everyone who loves to party and wants to see us and or meet Noelle!

Rain Date: None...we are planning for any weather. There will be a big tent in case of rain and for shade from the sun. So, be there!!!

What to expect: As of now there will be a big tent with tables and chairs, two jumpies for the kids (and adults like me), a magician, a facepainter, a spectacular butterfly release, food and much much more.

What to bring: 1. A very positive and fun attitude. We want this to be a Celebration of life, so no moping or feeling sorry for us allowed! No talk about illness and no asking how Noelle is doing (we will keep you up to date here). Also, remember, we haven't told the girls anything, so please do not mention Noelle's current relapse status at all!!!
2. A dish , snack, dessert, or drink to pass.
3. Friends, kids, the whole family!

We are so very excited about Saturday and so are the girls, so come help us put on a great party!

See you Saturday!
Dave

Quick Update on Noelle...
We have thrown out all restrictions and are having fun. Tuesday we went to Auntie Erin's and Auntie Karen's for visits. Today, we went to Fired Up to paint pottery and out to eat at the Rainforest Cafe. Tomorrow, we are going to the Racine Zoo to feed the Giraffes and will have a Make-A-Wish pre-party with the Make-A-Wish Representatives to discuss our trip next week. Friday, clinic. Saturday, Boogie Woogie! Sunday, time to chill. Monday, off to Disney.

Noelle is showing some signs of illness. She is very moody and sleepy at times. She is also starting to complain of some bone pain, like her back.

However, she is still in great spirits and we are trying to match that level.

Tessa is starting to have some serious anxiety over Noelle's illness. Although we haven't told her just yet what extent of illness it is, she is sensing something very wrong in our household. We worry about her a lot and our heart aches at how emotionally drained she looks. We appreciate all of you who have offered play dates for her, as the distractions will be great!

Lots and lots of love,
Dave

Saturday, August 11, 2007 12:16 AM CDT

COME ONE, COME ALL

SPREAD THE WORD!

A CELEBRATION OF NOELLE'S LIFE is scheduled for Saturday, August 18th at 9:00am at my Parent's House (2515- 136th AVE Kenosha, WI 53143).

((Noelle's good mood peaks at around 10:30 and weakens by 12:00 or so)). However, the party will be 9:00am until into the evening, so stop by anytime to see her and the family. We would absolutely love to have a big, big turnout to see her. Even if you can stop by just to say hi!!!

We want to celebrate and reflect on Noelle's life while she is still here with us to do so. Anyone and everyone is invited....even if you have never met Noelle in person but still love her. We want it to be so, so, so much fun with adults and kids.

Please bring a dish to pass and some drinks to fill the outside refrigerator. We are planning this quickly so if anyone is interested in helping me, I would so appreciate it. I need help organzing a face painter, jumper/bouncer, clown, magician, butterfly release, etc. I will pay for it all but need help scheduling since I don't have access to Kenosha phone numbers.

Directions to my Parent's House ----

Take I-94, exit hwy 142 by Mar's Cheese castle, go west on 142, turn left on UE, it will be the third house on the left. Parking is available just south of the house.

We are so excited to do this before we leave for Disney.

Friday, August 10, 2007 5:49 PM CDT

We returned from the beach after a glorious time. Noelle, as well as all of us, had a great time! By the way, we had them take the cast off her leg prior to the beach, as the cast was just a preventative...not a requirement.

Today, Noelle got the wash to try to help her immune system put up a fight. The cancer is growing and now is 10 percent of her immune cells. We just hope and pray to make it to Disney together and have a good time. God, we ask for very little and humbly serve you. Please just give us some more happy times together. We know your plan is set in place, but we hope and pray that it allows us some more happy memories with our dear Noelle.

Please everyone, pray that we have our last trip together and that Noelle makes it to Disney world and has a great time.

Dave

Tuesday, August 7, 2007 3:57 PM CDT

Surely, no one is good at saying what I am about to say. I have seen it written on countless websites and in countless ways, but just don't know how to make the words come out of my mouth or onto the screen.

After three long, long years of fighting the Cancer beast, we have received the news we thought would never come. Noelle has relapsed again and our treatment options have shrunk to nearly nothing. To say we are distraught would understate things to trivial. We are heartless and soul-less right now! We have been run over by one too many semi-trucks on this road and we are Road Kill of emotion.

However, in the Naylor way, we are telling cancer to go
F**K OFF! We have just made reservations for the fanciest hotel on the beach and we are jumping in the car for three days at the ocean. When we return, we will get the cord blood wash and tank up on blood products. Monday, we will fly home, thanks to Teleflex, on our own private jet! We will live it up at home for a week and then we will fly to Disney for a week!

Screw you leukemia, you won't ruin our life any more!!!

Please know that we have not in any way shape or form found a way to tell the girls...so please do not say anything to them! We will tell them when it is time!!!

With much sorrow, fear and utter dismay...
The Naylors

Monday, August 6

Monday Afternoon

HELP NEEDED! MY SISTER, ERIN AND MY PARENTS ARE GOING TO BE CLEANING OUR HOUSE SUNDAY, AUGUST 12 AT 8:00AM. IF ANYONE IS AVAILABLE TO HELP, THEY/WE WOULD SO GREATLY APPRECIATE IT. AS YOU KNOW, THERE IS LOTS OF WORK TO BE DONE TO GET IT READY FOR NOELLE'S COMPROMISED IMMUNE SYSTEM. DON'T TELL ANYONE BUT WE ARE HOPING TO BE HOME SOON AFTER IT IS CLEANED. PLEASE CONTACT ERIN AT pawloerin@yahoo.com OR ME, tpawlow@yahoo.com IF YOU CAN MAKE IT.

Monday Morning

Tessa is on the mend from her tonsil and adenoid removal. She was so excited (literally) to get into that surgery room and so angry to go into the recovery room. It took two nurses (one male and one muscular female) to hold her down as she came out of anethesia. She got her pulse ox off and was in the midst of getting the IV out when I rushed in. It took about 5 minutes but she calmed down after telling me "I hate those doctors", "why did I want to do this" and "this is the worst day". It was interesting. I have had a few of those recovery room experiences with Noelle, too. Tessa is eating more and having more energy lately. She got up enough energy to go visit Alexia and Sofi and even pushed Alexia in the swing. She just loves her so.

Noelle continues to do okay. She has been pretty crabby lately. I am blaming it on her leg because I don't want to think of any other reasons. She will get it off on the 13th, have more xrays and then decide if another needs to be put back on. Yuck! Sleeping has become unbearable and I thought it was bad before. In between the dirty looks, I do get a few smiles and laughs out of her though each day and that is all that matters. I can't wait until the day when I can tickle her and she will laugh. Her new favorite activity is dancing to her Fisher Price MP3 player with mommy doing all the work, of course. Her favorite songs to dance to are 'you are my sunshine', 'baa-baa black sheep', 'grandma got run over by a reindeer', and 'rudolph'.

Please continue to send positive thoughts to Alexia and her family. They have lifted her restrictions (no mask, go out in public, eat anything you want, etc) and she is loving it. She got to go in a shopping cart for the first time with her mama pushing. She had a great time. Her next request is a pony ride. Imagine being three and loving life so much. It is amazing.

Love always,

Tonya

Thursday, August2

One of our dearest friends down here in Durham just received news that their daughter has relapsed after her second transplant. We are heart broken and devastated and can only imagine the anguish they are feeling. Leukemia is a never ending disease that steals our children away from us and I am just sick and tired of it. We bonded with Alexia and her awesome family immediately since both girls were three year olds going into a second transplant and because they are just such nice people. Please keep them in your thoughts and prayers.

We also found out today that another family lost their daughter yesterday due to a fungal infection plus other organ issues. Emily had her second transplant over 9 months ago for AML and was doing a super job keeping the leukemia away. She had her first transplant at Children's Hospital of Wisconsin so we bonded with their family right away. They are also a loving and caring family who did everything in their power to keep their daughter alive. Please keep them in your thoughts.

Tonya

Wednesday, August 1

Today, we were informed that Noelle is currently "stable"...in medical terms. I perused the online dictionary and found many definitions for her "condition." Here is what the dictionary stated....

stable /ˈsteɪbəl/ (of a patient's condition) exhibiting no significant change.

Stable? After three years, it is amazing how comforting that a simple, yet uninspiring statement can mean. Noelle is stable. She isn't any worse and for now that is definately a sweet melody.

Transplants in general carry a lot of risk...2nd transplants carry so much more. So, with thanks to God, we will wait and be patient with stable.

As with many things, however, stable does have alternative meanings; and, while her medical definition means "exhibiting no significant change," her spirit exhibits a totally different definition.

stable /ˈsteɪbəl/ steadfast; not wavering or changeable, as in character or purpose

Despite the many difficulties she has faced, Noelle has exhibited a stable will. She is steadfast in her courage and unwavering in her will to live. She encourages us each day by her "spit fire" attitude and her ability to carry on during this life.

Amazing how we look at things differently with a little perspective. In one definition, exhibiting no significant change. In an alternative definition for the same thing, steadfast; not wavering or changeable, as in character or purpose. Hmmmm.....

Today, I encourage you to re-examine what is stable and unchanging in your life. Maybe your significant other or your good job or your health. And think of it not as "unchanging," but rather "steadfast and not wavering." Then, maybe you will see that your loyal family members, your job that provides for the bills, your health, whatever you have, is not just simply there, but should be appreciated for its steadfast and unwavering nature.

Much, much Love
Dave

Saturday, July 28, 2007 6:06 AM CDT

Boy, are we bad at updating lately....

Noelle is now dressed in a full leg pink cast. After a week of crying how much it hurt, Dave and I pushed harder for an xray. Sure enough, a spiral fracture revealed itself on her left tibia. We are a little peeved that we have asked three separate times for an xray only to be told it was a sprained ankle. The cast will allow her to move around according to the orthopaedic surgeon (if that is at all possible). She is extremely uncomfortable with it on as I am carrying her and two pumps. Sleeping was definitely interesting.

Tomor
row should have been Noelle's two year anniversary from her first transplant. Many of our friends from that time are here having their check-ups. I am kind of bummed when I think about it and just try to put it out of my mind. (now, for all you guestbook journalers, try to refrain yourself from telling me how much I do have going for me. :) )

Erin is here and it is nice to have her as a distraction from the everyday routines of life. We picked her up at the airport and headed to the BOPP to get Noelle's cast. She is always a trooper when it comes to following along for medical things.

Tessa had an awesome week at camp. She literally enjoyed every minute (making smores, swimming in the river, playing hide-n-seek, singing camp songs, seeing snakes, holding a box turtle) with the exception of the mosquitos and blisters. The camp counselors said that she has an excitement for life and every single activity they did.

On tap this week, pre-op for Tessa, tonsilectomy for Tessa, 100 day studies for Noelle. It is also Dave's and my 9 year anniversary.

Tonya

PS New pictures

Monday, July 23, 2007 9:10 AM CDT

Hello All-

Noelle had a little harder of a week. Her differential has been showing a higher number of monocytes and eosinophils so we have been keeping an eye on this. It could be indicative of allergies, illness or GvH. On Saturday while getting platelets, her temperature rose to 101 degrees. The nurse practitioner did a surveillance blood culture just to be sure. Sure enough, we got the call Sunday that it was positive for gram positive staph clusters. She is now on antiobiotics again for this until the next set of cultures come back. (shoot)

Also, on Friday, Tessa, Noelle and I were doing a train down the slide and her little shoe stuck while going down. Her ankle and lower leg twisted causing her shoe to come off. She hasn't been able to walk on it since Friday. Dr. Parikh thinks it is just a sprain and wants to wait on an xray. (double shoot)

Other than this, life has been pretty good. (if you don't count all my worrying :) ) Tessa began an outdoor camp today called Otter Junior in the Eno State Park. She was so excited this morning and could't contain herself. She will be there from 9-3. It is a little hard for Dave and I because she has never gone to something for this long alone. Tessa also lost her first tooth this week. It has been loose for a long time. She tugged it at dinner and out it came. I was happy for her to reach this milestone but sad. I am so frustrated with leukemia lately. I feel like I have missed some great years with Tessa. I know we have had some good quality time together but it just isn't the same as it should have been. She has been forced to grow up quicker. She doesn't need me as much and I miss my little toddler. When I should have been putting her to bed at night, others have had to because I have been at the hospital. When I should have been cuddling her, I have been drawing meds and putting IV pumps together. (triple shoot)

Darn you leukemia, go away....

T

Wednesday, July 18, 2007 12:54 AM CDT

Hello All,

Often times, I will post some thought provoking idea along with new pictures or at least update the site to give an idea of where the pictures have come from. However, words were not needed to describe the beauty in Noelle's smile. It is so remarkable that one radiant moment can erase so many challenging days. Imagine our excited astonishment at Noelle just suddenly smiling. An endearing awakening...a festive return of our sweet and funny and beautiful girl!

On another note, I just wanted to express my heartfelt admiration for my wife and other beautiful daughter. Tonya and Tessa continue to amaze me with their grace and caring during our struggle. They dealt with snarls and torturous combing and long showers and longer drying times to grow some very long and beautiful hair to donate to Locks of Love. The true beauty in their act can be seen in the resulting haircuts...they went into this adventure as thoughtful, pretty girls and came out as my gorgeous heros! Needless to say, I was very moved by their donation.

On to my health...First, thank you for all your concerns for my well being. I was feeling pretty weak having anemic symptoms and very bad acid reflux. My body felt very tired and run down, the room was spinning nearly all day every day, my throat and chest felt as if someone poured gasoline down it and lit it on fire, and I couldn't go a day without throwing up. However, I have to say that my symptoms are nearly gone....Prilosec and Iron supplements seemed to by a good snake elixir. I am happy to report that I am back on my feet and resuming fully normal activity!

God Bless you all in everything you do in this and all the rest of your days...

Dave

Sunday, July 15, 2007 1:54 PM CDT

It makes me nervous to say it but Noelle continues to do well. She went in for a platelet transfusion yesterday after going three whole days without one. She is holding her blood transfusions and white blood cells longer. We have scheduled her 100 day studies for July 31. Wow, time flies.

She is eating okay each day. Today she had a small bowl of mac-n-cheese, cheetos and a little bite of peanut butter and jelly for lunch. Yes, everything is organic for those of you who know us. Dr. Parikh said that we could probably reduce TPN this week. Yeah! I try to get a jar of organic baby food mixed with apple juice and protein powder in her for breakfast.

She continues to be a typical two, I mean three year old. She fights everything from dressing to taking medicines to brushing her teeth to baths. The only thing she doesn't fight is the potty chair. Thank goodness!

Dave has suffered some ill effects due to pheresis. He just hasn't been feeling good lately. We thought he had food poisoning but the nurse practitioner checked him out yesterday. She said his heart murmur is much louder so she ran labs and that it sounds like he has a harsh case of acid reflux. He received two IV doses of antibiotics and was diagnosed anemic. I guess he gave all his good cells to Noelle.

Grammy and Poppy are back with us after a short trip to Savannah. Tessa is thrilled to have them here as usual and I am still trying to get Noelle to warm up to them. Everytime she sees them, she thinks I am going to leave her so she gets angry. Unfortunately, that was our hospital routine...They would relieve me.

And last but not least in the news, Dave and I are blessed to have been asked to be godparents to our close friend's (Amy and Patrick) new baby, James. Amy and Patrick are Noelle's godparents. We are excited to get home and meet him.

Tonya

Friday, July 13, 2007 7:03 AM CDT

Our locks of love haircuts are now done. Tessa and I had 20-21 inches cut off between us. It was so worth it and we are thrilled with the results. Tessa is so happy...no more ponytails, no more pigtails, no more brushing and detangling. She did say she would miss braids but I think I could squeeze in a little braid if she wanted.

If you ever want to do something for a child, then this is it. All wigs/hairpieces made are free for children 18 and under. Go to www.locksoflove.org for more information.

See our pictures on the next page.

Tonya

Wednesday, July 11

Noelle continues to do well. She is requiring platelets every other day and blood every 8 days now. We have reduced some of her medicines and discontinued her antibiotic. Her bilirubin was 1.2 which is now back within normal limits. She is starting to eat more each day but has started to throw up a little more. She continues to complain of her tummy hurting but it seems controlled by medicines. We hope that discontinuing the six doses of antibiotics each day will help with the tummy pain. She continues to hate clinic and shuts down when we are there. At home, she opens up more and expresses herself which we are thankful for. Yesterday, she was giggling at herself. She was rhyming words such as Fred is dead and gets hit in the head....then she would starting laughing. I hate to say it but she takes after her mama, laughing at her own jokes.

Tessa has enjoyed a week of soccer camp. Dave and I are so impressed with her skills. She has maintained what she learned last year and improved even more. We are excited to see her play indoor soccer this winter.

Tomorrow, Tessa and I will get our haircut for Locks of Love. I have a feeling that we both have a very short hairdo in store but we are willing to make this sacrifice for others. After all, it is only hair. I will post pictures of the before and after.

Take care,

Tonya

Monday, July 9

The fear, rather the horror, of normalcy is beginning to creep back into our tethered hearts. As we move closer to our return to Wisconsin, I am moving farther from comfort. I have been talking a lot lately about how much we need to "go home" and how much I need our life to begin to be "normal" again. However, years of living in shelter has stored wells of anxiety over typical living. One of the moms on 5200 told me that she goes out to places like the mall and watches people who are going about their day. She indicated that she feels out of place there and doesn't usually stay long. She quickly retreats to her shelter.

How easy will it be to get out of our retreat from normalcy? That question is terrifying....

It would be heavenly to be able to just have typical routines and unremarkable days. Yet, the last two times we moved to that existence we were completely and utterly blind sided by relapse.

It would be fulfilling to go to work each day and earn our own money again. We have reluctantly relied on the good will and support of others for three years now. Yet, we desire to be the ones who help others and the ones who need a little less help ourselves.

For three years now we have had to quit our jobs. With little reward we serve the beast. So, it was chilling to receive our contracts from Kenosha Unified this year. Our signatures have seemed to ensure our surrender each year. This year, Tonya did not sign her contract. She is no longer employed. Reluctantly, I did. It is a hard reality when you begin your work year with reluctance. I am afraid I won't even be able to handle a full year of work. More frightening is missing out on the time we have all had together. Time to heal, time to love, time to be one unified soul. I fear breaking the bond the four of us have by being away daily, but work is fast approaching. I fear I will no longer be any good at the work I love.

The clock seems to tick in our faces...bringing us faster to the "normalcy" we seek...yet, farther from the shelter we have built in our closeness. As we try to let ourselves back into the world, we try not to let it consume our oneness.

I already can feel myself falling into old routines. Whine a little about this, complain a little about that. Our daughter is still alive, what right do I have to complain??? Yet, I know that the more I begin to complain about typical worries, the nearer we are to finding our way again. The more I fear moving towards a "normal" life, the closer I know we are to having to deal with it.

I just hope when we get to that life, we don't forget the road that took us there. Otherwise, bumps in the road will be mountains to overcome.

I wish you all luck in facing your fears.

God Bless All,
Dave

Saturday, July 7, 2007 9:56 PM CDT

SATURDAY JOURNAL

We take pictures, lots and lots of pictures. Our computer has thousands and thousands of pictures. You don't really know how valuable pictures are until you start looking at them. I don't mean casual looking, but very passionately looking at the moments of your life. I put together a slide show for our computer's screen saver tonight and added pictures from the last couple years of our lives (ever since we found the miracle contraption...a digital camera!).

Our life over the last few years has been by some terms simple. Having been closed off to the outside world of germs, we have been forced to take time to just be together. Many of the pictures are of our house, our multiple apartments and our yard. On the surface, these pictures are ordinary...like our activities have been. However, when you look deep inside the eyes of those pictures, when you feel the intense love they contain, you realize how super our life has been.

The pictures reminded me that we have 20 beautiful little fingers and 20 fantastic little toes in our house. They get into things, they run, they stomp, they climb, they cause mischief, they touch things they shouldn't, they create beautiful art, they make lots of noise, they build things, they knock things down, they wrestle, they tickle, but most of all they give great big hugs. And those 20 fingers and 20 toes are attached to two very special girls.

I spent about an hour really looking into the faces in those photos, and realized that my life is much more then it appears. Simple snapshots of a Grand and Wonderful Life.

I encourage you to take out some photos and really look at them. Fall in love with your life all over again, I know I did!

When you really learn to appreciate what you have, you really learn what it is to Love.

Lots of Blessings,
Dave

FRIDAY JOURNAL

My goodness, where did the week go? Noelle has turned the corner and seems to be feeling a teensy bit better everyday. She is getting back to her old self and talking about things I had thought she forgot long ago. It is nice to see my smart girl who never misses a beat back. Overall, her labs are looking good. She gets platelets every other day now and blood every 6 days or so. It is nice to see her recovering. We stopped neupogen for 2 days and her white blood cells dropped to 3.9 so we gave her a dose last night. She had an awful night and it was no surprise to see her white blood cells at 20 today. That is just too big of a jump for her little bones and my nerves. Dave knows what neupogen feels like in your body and he says it gave him chills, nausea, pain, and made him so tired.

Tessa saw Dr. Evans, Noelle's ENT, today due to her recurrent tonsillitis and cough. Dr. Evans has scheduled her to have them removed August 2nd. I am happy that this is going to happen because then Tessa can start Kindergarten without getting as sick. I am also happy that the fear of Tessa giving Noelle strep throat can go away. Noelle is having a very hard time shaking the strep in her blood and continues to have low grade fevers.

It is also scary to think your healthy daughter is joining the surgery rotation at Duke though. I told Noelle about it and she told me that Tessa should have me hold the gas mask, the nurse put the red light on her toe and the doctor hold the coloring book while she goes to sleep. This was Noelle's routine during radiation twice a day....and I was wondering if she remembered doing it. The thing that took me back is she said she wanted to do it again. I tried to tell her that I hoped she would never have radiation again but then gave up. I thought then about telling her that she would have that happen
when she got her lines out but decided against that too.

Our week of wonderful weather is now done. This afternoon's temp raised to over 96 degrees...yuck. Luckily, we got the girls out this morning for a bike ride while it was still overcast. It is weird to wish for cloudy cooler days but with GVH in our life those days are much appreciated.

Tonya

P.S. Thanks to Brenna who donated her baby's umbilical cord a few weeks ago. She is thinking of contacting the news station to do a story since the nurses didn't even know you could donate it. Without people like Brenna, Noelle wouldn't be alive today. Also, Tessa's tonsils will be donated to researchers at Duke. I guess they are studying them for research on immune deficiency diseases. Kind of intersting...Who knew?

Friday, July 6, 2007 8:09 PM CDT

My goodness, where did the week go? Noelle has turned the corner and seems to be feeling a teensy bit better everyday. She is getting back to her old self and talking about things I had thought she forgot long ago. It is nice to see my smart girl who never misses a beat back. Overall, her labs are looking good. She gets platelets every other day now and blood every 6 days or so. It is nice to see her recovering. We stopped neupogen for 2 days and her white blood cells dropped to 3.9 so we gave her a dose last night. She had an awful night and it was no surprise to see her white blood cells at 20 today. That is just too big of a jump for her little bones and my nerves. Dave knows what neupogen feels like in your body and he says it gave him chills, nausea, pain, and made him so tired.

Tessa saw Dr. Evans, Noelle's ENT, today due to her recurrent tonsillitis and cough. Dr. Evans has scheduled her to have them removed August 2nd. I am happy that this is going to happen because then Tessa can start Kindergarten without getting as sick. I am also happy that the fear of Tessa giving Noelle strep throat can go away. Noelle is having a very hard time shaking the strep in her blood and continues to have low grade fevers.

It is also scary to think your healthy daughter is joining the surgery rotation at Duke though. I told Noelle about it and she told me that Tessa should have me hold the gas mask, the nurse put the red light on her toe and the doctor hold the coloring book while she goes to sleep. This was Noelle's routine during radiation twice a day....and I was wondering if she remembered doing it. The thing that took me back is she said she wanted to do it again. I tried to tell her that I hoped she would never have radiation again but then gave up. I thought then about telling her that she would have that happen
when she got her lines out but decided against that too.

Our week of wonderful weather is now done. This afternoon's temp raised to over 96 degrees...yuck. Luckily, we got the girls out this morning for a bike ride while it was still overcast. It is weird to wish for cloudy cooler days but with GVH in our life those days are much appreciated.

Tonya

P.S. Thanks to Brenna who donated her baby's umbilical cord a few weeks ago. She is thinking of contacting the news station to do a story since the nurses didn't even know you could donate it. Without people like Brenna, Noelle wouldn't be alive today. Also, Tessa's tonsils will be donated to researchers at Duke. I guess they are studying them for research on immune deficiency diseases. Kind of intersting...Who knew?

Tuesday, July 3, 2007 5:43 AM CDT

Quick Night Update:

Noelle had a long day at clinic but a good one. She received IVIG and a blood transfusion. Her counts looked great with white blood cells at 16 (good-bye neupogen, the drug that stimulates marrow growth), hemoglobin 7.9, platelets 57. Her bilirubin is down to 1.9 which is awesome. Her differential looked good, too. She has a slight skin rash from discontinuing Cellcept last week so we have started some GVH creams. All in all, a good day but I am exhausted from all that waiting around (8 hours).

Tonya

Happy Fourth of July

We were just watching our home video of the fourth from last year. It always amazes me how much one's life can change in one short year. It just goes to show you how you cannot take anything for granted.

Noelle had a great weekend. She wanted to go for tons of walks, play new games, and just be her old self for more time than I have seen in months. She ate a little more food and enjoyed a frozen yogurt out at the outside mall.
It was a super weekend with Erin and Mike and my parents.

On the medical front, Noelle was diagnosed with a line infection (gram positive strep) so we tried Vancomyicin all weekend. Yesterday, the level that I drew indicated a non-therapeutic level so we switched her to two new antibiotics given every 6 hours. Yikes! I thought I had a handle on these pumps. Tessa has been coughing too so we know it is going around the family.

Today is our big doctor's appointment with Dr. Parikh.

Until later,

Tonya

Friday, June 29, 2007 6:27 AM CDT

Noelle has perked up a little more as the week has gone by. Her new favorite activity is digging beads out of play doh. She has also been coloring and going for stroller/car rides many times a day. Dave and I have each remarked on how we have heard her old voice more. It is nice to hear that cute little voice when she speaks.

We continue to go to clinic daily for platelets and have switched back to the volume bag reduced since the regular 1/2 unit wasn't giving her any bumps. Thank you to those who continue to donate blood and platelets. I can't even imagine how many transfusions Noelle has had in the last three years. I think the number would be astounding.

Have a nice weekend. I can't believe Fourth of July is coming up so quickly. Tessa asked what we were going to be doing. I guess I better start figuring that out.

Tonya

Wednesday, June 27, 2007 5:56 AM CDT

Hello All,

Noelle had a good appointment yesterday. She received platelets and her weekly IVIG (her fake immune system). The doctor cut out her Cellcept (an immune suppressant) completely which thrills me. This med can make your stomach hurt and it is 2 two hour IV pumps each day plus an oral dose in the afternoon. Noelle is thrilled to have one less pump attached to her. It is very hard to get around with these pumps.

We are still working out some behaviors. Dave and I have concluded that the hospital really took a toll on her personality/emotions. I was reading a book to her about the hospital yesterday and she said "that place scares me". We even thought that maybe she is having some post traumatic stress. Time will just have to be the medicine for that.

Tessa is participating in Storybook Tumbling this week so she comes home exhausted after the work out. It is also 95 degrees with high humidity so that is tiring in itself. Noelle begs to go for rides outside in her stroller/pink car but we have to wait until 7 or later and it is still hot (like a steam room). Yuck!

We are excited to have my mom back tomorrow, my dad back Friday and my sister and her husband on Saturday. Yeah! Family together, what could be better than that. We all haven't been together since Erin and Mike's gift opening Oct 1. I think back to that day and remember how normal our life was becoming.

Tonya

Monday, June 25, 2007 10:04 AM CDT

First of all, I wanted to say a very special good-bye to a friend and supporter, Mary Margaret, who left earth after fighting lung cancer for quite awhile. The last time I spoke to her she told me that she was in remission.

Mary Margaret was an art therapist for the bone marrow unit and clinic for many years. She took every child under her wing and let them express themselves artistically in whatever way they wanted. She particularly made a big impression on Tessa. Tessa started her life at Duke wanting to be a doctor and changed quickly to say she wanted to be Mary Margaret. Tessa expresses herself in art abstractly which is the opposite of Noelle who pays close attention to every detail. Mary Margaret let each of the girls style flow and complimented them along the way each day. Mary Margaret had her celebration of life at Duke Gardens on Saturday. We were unable to go because Noelle needed platelets and antibiotics at clinic but we were there in spirit. Also, we didn't tell Tessa. We don't know if we are doing the right thing or not, but feel that Tessa has suffered enough from loss of lives around her. We told her Mary Margaret is now working somewhere else which of course is the truth---She is working with all the children in HEAVEN.

Anyways onto another subject....Noelle continues to do okay. She continues to speak, walk, sleep and play minimally. She complains of her stomach hurting still. She seems to have regressed but we are hopeful that this will diminish as time passes. We think we did see one smile/laugh on Saturday. It is so hard to watch her suffer but we are so happy to have her home. She is paranoid that I am going to leave her and it is hard for her to separate from me. Yesterday we got out as a family of four to Sofia's birthday party. It was so nice to be out at an event all together. Even though Noelle didn't participate, she sat on my lap and took it all in. Doing normal things has got to be making an impact on her.

T

Friday, June 22, 2007 9:24 PM CDT

re�ward -noun
something given or received in return or recompense for service, merit, hardship, etc.

The confetti might as well have fell down as hail. Each piece, each speck of color, felt as a hundred reassuring pats on the back. The smiles, beams of radiant sunshine, piercing 57 days of overcast hearts. The applause, a thundering river washing you clean of the suffering in 5200's rooms. One, quickly fading minute...delivering you into the rest of the years of your lives together.

There is no other way to describe the feelings we had when Noelle finally got her confetti parade yesterday! Yes, we have had one confetti parade already...but, this time, we truly understand the incredible reward it is to have another day together. From hardship...something has been given. For today, we are more in touch with the will to live each moment for what it is and to not look back. We go forward, as a family, united in the reward we have been given. Another day, not seperated by illness or divided by cancer, but together!

We want to thank God for this opportunity to be together, again. We appreciate every minute, every breath you have given us. Praise be to God.

There are so many people to thank for their help during this ordeal, too many to mention by name. But, we believe this simple quote says it all.

"Love is the way I walk in gratitude."
--from A Course in Miracles

And so, with much love in our hearts, we move forward. We will see you on the road to our new life. Please travel with us in our love for life!

Dave, Tonya, Tessa and Noelle!

Thursday, June 21, 2007 9:21 PM CDT

Well, we are home. Noelle had her confetti party at 12:00 pm and we are all home together. Tomorrow, I will write much more in depth about our feelings and update with pictures of the confetti!

Dave

Wednesday, June 20, 2007 8:51 PM CDT

Hey There-

It looks like Noelle will have her confetti parade at noon tomorrow. We are so thankful that we get to bring her home to our townhouse. We have been waiting for this day for 2 months.

She continues to be plagued by awful stomchaches but we hope to get those under control soon. We are still waiting for the million dollar smile.

Tonya

Tuesday, June 19, 2007 8:21 PM CDT

Quick update as I am tired and have an awful stomachache:

Noelle's bilirubin climbed to 5.9 today which is scary. The doctor's ordered an ultrasound of her abdomen and a liver panel to see what actually is going on. Dr. Parikh came in and indicated that only 2.1 of the bilirubin is bad and the rest of the number is the transfused blood cells that have died. Her ultrasound of the liver looked good but the gall bladder is still sluggish. This indicates that the sludge in the gall bladder is still backing up into the liver. Eating will solve this problem and getting off IV nutrition. Today we snuck 2 ounces of smoothie into her with a syringe in hopes of getting those organs working again. She ate a bite of cracker, gagged and threw up so it will be a very slow process as we learned last transplant.

We are scheduled for discharge on Thursday now. The hospital is wearing me out and I am looking forward to being together as a family of four again.

T

Monday, June 18, 2007 8:03 PM CDT

Hello All,

Well, we continue moving on with Noelle's treatment and our hospital stay. Noelle currently is showing great engraftment (WBC 4.1) and seems to be less "angry" at the world. She is still far from happy, but neutral is good sometimes!

Noelle's other counts look good, except for bilirubin (liver/gallbladder test). Her bili is 4.8, which is well out of the normal range of .2-1.2. This result concerns us, as Noelle is turning "yellow" on her eyes and skin. Dr. Parikh said his pat answer when he said "we are watching it closely." We are fearful this will delay our release from the hospital, which is now pushed back to Thurs. We will see. He did say that we have successfully made it through part 1 of 2 in the second transplant saga. Now, we must watch for long-term effects of the medicine and for relapse.

It feels good to have made it out of the short-term phase all in pretty good shape!!!

Tonya's parents leave Wed. for a week, so we will be on our own. We hope at home together, otherwise it will be quite a challenge. They do so very much for us, we will feel their absence for a week. Guess I better get out my chef's hat :o)

Well, gotta run.
God Bless,
Dave

Thursday, June 14, 2007 11:27 PM CDT

QUICK UPDATE - (Friday Message)

Dr. Martin just called with the chimerism results!!! No detectable host cells, only donor cells. They are cautious not to say 100 percent donor cells any more, but that is what the result means. 100 PERCENT DONOR! Yahoo! Also, we were told we get out of the hospital on WED. Double Yahoo!

THURS. Message

Today's journal is dedicated to signs of luck and hope, and to an incredible boy....

I have talked with many educators in my years in Kenosha Unified and most have a similar answer to the following question....Why did you go into education? The typical response (which is shared by me) is simply...to help kids! However, as much as we help and guide our students, they help and guide us. So, the missing piece to that answer is...to be around and inspired by so many great kids!

Each day, we are witness to the miracle of young people. Their sweet innocence, their love for life, their determination, their desire to be the best at what they do, and their inspiring will to live. The kids on 5200 show us these qualities and more each day.

Today was my birthday and it was a great day. It was great because I was with my girls and I shared many loving and happy moments with them. Today was a great day for another reason, as well. As we were sitting in our living room (Noelle included, as she was on a pass), the mailman knocked on the door. He handed me a package, and then I noticed another package sitting on our front porch.

Now to premise the package, I have to tell you a tiny detail... I have had the great pleasure of knowing a very thoughtful, generous, kind and smart boy named Michael. We have known each other many years now, and I have grown very fond of him and his very unique flair for life. Michael is one of the sweetest and most thoughtful people I have ever known. Every time I see him he can make me laugh. He has a contagious smile that can make me smile on my hardest days at work.

Back to the package...I opened the package and out fell several bags of what appeared to be butterfly die cut outs. We opened the bags and out flowed butterfly after butterfly after butterfly. Also, there were shamrocks pouring out of the bags. Each butterfly and shamrock was colored and contained a message of hope and inspiration on it. All told, there were 593 of these little guys. They took up the whole floor! Tessa was diving in them and throwing them every where.

When I continued to look in the box, there was a letter and a card. The letter described how one boy, who I am happy to say is my friend, was reading in Noelle's website how we were looking for signs of luck. Well, he took it upon himself to organize a "Butterflies for Noelle" drive so he could collect signs of luck and peace and love and send them to me, his friend, and my family. He asked every student in his elementary school to take a butterfly or shamrock, decorate it, and sign a message of luck. There were 593 in all!!! One signed by all of the students at his elementary school. 593 messages of good luck!

I cried a little then and a lot now. Why did I go into education? To be around so many inspirational and great kids. Thank you Michael for being so kind to me over the years and being part of my life. And thank you Whittier Elementary students and families. Michael you made my birthday the most special it could be and you brought hope and luck into our lives. I miss you buddy and hope to see you when we return!

Lots and lots of love,
Dave

PS. In the photo section, I have posted new photos of the butterflies!!! See for yourself how wonderful it was!

Wednesday, June 13, 2007 4:59 PM CDT

Hello All,

Noelle continues to improve in most areas (still cranky, but who wouldn't be). Her WBC is now 1.3 and she is fully engrafted. Her bilirubin (the measure of the bile and gallbladder/liver function) is down a bit from earlier this week. Also, her rash appears more under control. She still complains about stomach pain a lot. We are trying new stomach/pain meds to see if we can help. Also, her continuous pain management drip was stopped today (a great sign that we might be going home some time soon).

Noelle got a home pass for four hours yesterday and is on her way home again today for a couple hours. She appeared to be neutral about the experience when she was here, but when she and I returned to the hospital, she seemed to have a happier glint in her eye. The doctor yesterday said that her poor mood will most likely be cured by her discharge from the hospital. Well, yesterday appeared to begin to confirm this fact!!!

Today, I got my central line out. I asked them to do it without pain meds., as I wanted to have a memory of the pain the central line causes. Man was that a tough decision, ouchie! I know it is weird, but I feel closer to Noelle when I feel some of the pains she has felt. I have been blessed to have been able to donate my cells to her and feel great knowing that my cells have helped her through a very touchy time, infection wise. I know a bit about central lines, bone pain, nausea, headaches, etc., from this experience, which keeps me grounded in understanding her suffering. Thank you God for this tremendous opportunity to get a glimpse into a small part of her suffering. I know very little of her overall pain, but at least could suffer some for her.

Life around here has been tiring. Funny moment...I was so tired the other day from staying with Noelle at the hospital and not sleeping that in the morning I accidentally brushed my teeth with her Nystatin diaper cream. Yes, that is right, I used anti-fungal medicine on my teeth. For the last two days, I have been unable to taste food the way it tastes and I think I finally figured out why. Thought you all might want a little laugh, at my expense :o)

Well, gotta run.
Peace and Love,

Dave

Tuesday, June 12, 2007 11:22 AM CDT

Noelle is continuing to show good signs of engraftment. Her WBC were 1.1 today and her ANC was over 800 yesterday. Her liver/bilirubin has risen which could be indicative of her gall bladder backing up. The ultrasound of her gall bladder shows the medical term "sludge" which is common in patients who have been on so may IV meds plus TPN/lipids. They have increased a medication to thin out the sludge and help it make its way into the intestines instead of blocking. Because of this, she complains continually about a stomachache. She is having trouble sleeping and just doing anything. She asks for medicine to help the pain but nothing seems to be working. If it is not one thing, it is another in this world. Unfortunately because of this, we were denied a pass to the apartment yesterday. Big bummer! We are still on the list of discharge patients but there has been no talk of a date yet.

T

Sunday, June 10, 2007 10:21 AM CDT

Hello,

After many days and nights of praying, worrying, and just snuggling Noelle tightly, we are so very, very pleased to inform you all that today (day 47), Noelle has officially engrafted! 52 long days in the hospital has finally been rewarded with the gift of a new immune system and hope of a cure for our Big Girl!

Tonya and I, as well as Tessa and Noelle, would like to most sincerely thank all of you for your thoughts, well wishes and most especially prayers for our family. Tumultuous is the best word I can conjure to describe our last 52 plus days. Well, who am I kidding, to describe the last 3 years.

With God's great grace we may have finally found the cure for Noelle. She has been burdened with many trials and physical sufferings, but has continued to carry her cross with strength and courage.

Noelle, we are so proud of you BIG GIRL!

As her reward, today Noelle will get a 2 hours home pass and see the outside world for the first time in 52 days.

Welcome to the first day of the rest of your LONG LIFE, my dear. Welcome Home!!!

From your very, very proud daddy, mommy and sissy!

We love you!

Saturday, June 9, 2007 12:17 AM CDT

Todays labs .9 wbc, 522 anc. Noelle needs to stay over an anc of 500 to be considered engrafted. We won't check her liver until Monday again and the ultrasound people never showed up for the ultrasound of her gall bladder.

T

Friday

Noelle continues to be at .9. However, her segs/bands have risen which gives her an ANC of 596 which is great. She is going to have an ultrasound today of her belly since she is complaining so much and no med seems to be soothing her. Her liver/bilirubin doubled so we are watching that closely too.

Anyways, we are continuing to try to be patient. It is difficult but we are seeing small, small progress in Noelle. Yesterday, Tessa said to me "I love you mama" and Noelle said, "I love you too". Of course, I had to hold back my tears. I cry at anything lately. Kind of pathetic. Today, the Today Show was in Milwaukee and it made me tear up because the last time we were there was Light the Night and I was remembering Noelle walking across the finish line.

Have a good weekend. Enjoy your children and cherish every single moment, good or bad.

Tonya

Thursday, June 7, 2007 9:34 AM CDT

Same story, different Day:

.9 wbc
423 ANC

Tummy aches, no smiles, tired!

Wednesday, June 6, 2007 1:05 PM CDT

The majority of Dave's cells have died in Noelle's body now and her WBC's stayed at .9 which the doctors thought was great news. Her differential looked great but not high enough to keep her above 500. Today it was 423. We will take it though. HOwever, we still need three days in a row above 500.

Dr. Marten indicated that he put her on the tentative discharge list and is very happy with her counts. We even began changing some meds over for out-patient care. Tessa told me today that she can't wait to go back to clinic. How funny! We miss all the loving staff over there.

On a side note, Noelle is no longer Baby Kitty. She informed us that she is now Plain Big Girl. I guess this whole process has put her over the baby stage and into the big girl stage. I have to agree. No baby can go through this stuff, even the 1 month olds are big kids.

Another side note--I am thrilled to tell you that last night I got a kiss on the cheek. It was kind of a bribe but so worth it.

Anyways, back to the hospital after a quick shower and lunch.

T

Tuesday, June 5, 2007 7:49 AM CDT

Labs for Today= 1.0 WBC's ANC=750

If Noelle can keep an ANC over 500 for 3 straight days, she is considered engrafted. YEAH! Thank you for all your prayers. Keep them coming, they are powerful...

The Bone Marrow Asprit is cancelled. We are so happy about that. (Sandy, a BMA is a procedure where they put a huge needle into your hip bone space and remove the blood).

Anyways,

Tonya

Sunday, June 3, 2007 8:25 AM CDT

Noelle continues to be at about the same point. We received the lucky news that at Day 42, Noelle will be scheduled for a bone marrow asprit if she is not engrafted. Day 42 is Tuesday and that is her day off of granulocytes. Please pray with us that Noelle shows an increase in her white blood cells so she doesn't have to go through this horrible procedure again. She has gone through it so many times in her life. She deserves a small break.

Tessa went to her first kid birthday party yesterday. She had a wonderful time. They acted out the Sleeping Beauty ballet with three adult ballerinas. I was so happy for her to have some normal moments in her life. Sometimes I feel like I am faking those normal moments.

Enjoy the new pictures. The one on this page is the happiest I can get Noelle these days. It breaks my heart. If anyone has any suggestions...I feel like I have tried them all. (and no they do not give depression meds to 3 year olds :)

T

Friday, June 1, 2007 12:22 AM CDT

Gosh, I can't believe it is June. Where did May go? It has been in the 90's here in NC so I guess summer is here. We are not ready for summer. I feel like I was just starting the school year in September with all my speech therapy students.

Noelle continues to struggle to feel better. I feel like we take baby, baby steps forward and then backward. Yesterday, she developed a cough so the doctor is searching for the cause. We did a chest xray which turned out clear (thank god). It could be from the amlodipine, it could be from thrush which is appearing again, it could be from a virus, it could be from something called engraftment syndrome which really scares me or it could be from who knows what. Also her hemoglobin dropped to 6.6 in 24 hours which is concerning. They are searching as to where the blood is---stool, urine, stomach. He said that it is not the lungs since the xray did not show that and probably not the brain since she seems alert. Can I just tell you how my heart feels when I hear that stuff? He says that the blood will appear in 24 hours if it is in the bladder or stool. We shall wait and see, I guess.

Dave's cells have been great this week and she has remained at 2.2 wbc's with his grans on the third/final day. Dave donated again today which is becoming harder and harder on him. The shots he receives the night before are very hard on your body and give you flu-like symptoms. He threw up for a few hours last night and is very dizzy. Noelle receives this same med twice a day so I can just imagine why she will not smile.

I miss her smile, I miss her laugh, I miss her happy.....I am so tired. I look for signs of luck everywhere. Tessa and I play a game when driving home from the hospital called green light. There are so many stoplights on the way home and we usually get stopped by everyone. Stoplights in NC last 3-5 minutes so it definitely causes inpatience in me (an already inpatient person). Anyways, Tessa and I now say we will get green lights. She yells from the back seat "green light, green light, green light". I say "we believe we will get green lights". The first time we played we got every single green light. The second time we played the light turned red about 50 yards from us and I said to Tessa that it didn't work. All of a sudden it changed green. It had only remained red for 10-20 seconds. I was totally amazed and Tessa and I yelled out "we know Noelle will be cured". Crazy as it seems, it gave me hope for the night.

Anyways, sorry for the jumbled thoughts. Have a nice weekend.

Tonya

Wednesday, May 30, 2007 9:03 AM CDT

Hello All,

Noelle seems to be doing a little better these last two days. She has attempted to color, walk, play bubbles and watch videos. It is kind of funny....Last night, she woke Dave up at 2 am to watch a video and read books. In the past, we would have been too tired to do this. Now we are so relieved she wants to do anything and is showing a desire for something no matter what the time.

Yesterday, she received her first batch of Dave's granulocytes from the week and she got a bump to 10,0000 or 10.0 WBC's. We are pretty sure that the grans from last week were left out too long and not preserved correctly. This big bump should definitely help to make her feel better.

The doctor told us yesterday that her cell growth is going to be slow. He also said the record for the slowest growth is 80 days. We are hoping not to beat this record. It is hard to see people leave who came after you. Then again we don't want Noelle to be anything like the first transplant. I guess we have mixed emotions. We just want to get her out and doing things again to make her happy.

Take Care,

Tonya

Monday, May 28, 2007 10:46 AM CDT

MONDAY AFTERNOON UPDATE....AT RELIEVED CENTRAL

Well, this morning's heart attack got me motivated to do some checking. I called Dr. Parikh and asked him to check the cells himself. I also called our nurse practitioner to do some checking on Noelle's first transplant. Tonya and I are glad I did both.

Dr. Parikh looked at the slide and had the senior tech. look at the slide as well. Their conclusion was that these variants were unlike "bad" variants and they indeed look like they were possibly turning into lymphocytes or monocytes. He felt they were "normal" variants. Then, Michelle called. She looked up the results today and compared today's lab results with those of her 1st transplant (from day 32). On August 31st, 2005, after engrafting her 1st transplant, Noelle had 11 percent variant lymphs. Those lymphs. (from 2005) turned into good cells, not blasts.

Thank God for dedicated staff who are willing to check and re-check for you. Dr. Parikh and Michelle put our worries in serious check. Now, we just have tiny worries :o) Thank you both for checking so quickly and being so kind. We really needed the news you gave us.

For now, we will worry less.

Thank you all who gave quick prayers for Noelle. You help us believe!

God Bless,
Dave

MONDAY MORNING UPDATE....AT HEART ATTACK CENTRAL

I awoke a while ago to lab results that we have been dreading seeing. Noelle's differential, a count of what kind of white cells she has, came back with 7 percent variant lymphocytes. A variant lymphocyte is what they call a white blood cell that hasn't really turned into anything yet. It also, unfortunately, often isn't a good sign. We can not be sure that these cells are bad, but in Noelle's past, variant lymphocytes have always meant bad things. Usually, the variants show up just before blasts for Noelle.

We are so, so scared. We don't want this to be the beginning of the end for Noelle. Please God, for once, make these variants nothing. We aren't ready for Noelle to go yet. At least give her some time out of the f*#$@#g hospital.

Dave

Sunday, May 27, 2007 7:43 PM CDT

I just got Tessa off to bed after spending the night and day with Noelle. She had a fair night with restful sleep. She did have some vomiting and frequent potty breaks but we seemed to get back to sleep fairly easy. She awoke today with a fever so she slept in until noon. Dr. Parikh spent the weekend on the unit and continued to say that he is pleased with how she is doing. He continues to feel her symptoms are signs of engrafting, slow as it seems to be. He made some helpful changes which seem to be making Noelle feel a little better.

Today her WBC's were .4 even with Dave's granulocytes. Dr. Parikh says that she probably won't get big bumps anymore. Maybe his grans are going to other areas of her body to fight any infections....Who Knows?

Thank you for all the kind messages. Have a great Memorial Day!

T

Saturday, May 26, 2007 11:38 AM CDT

Noelle got her first dose of Dave's grans yesterday and her WBC's only were 1.0. I don't really know what this means. The doctors continue to believe she is engrafting. It is a frustrating situation because she usually jumps to 9.0 or higher with Dave's first dose. I asked them to repeat the ABC to double check the numbers. Noelle needed platelets twice in 24 hours and her red blood only jumped to 10 after a transfusion. She continues to feel awful and sleep most of the day and moan all night. We feel terrible watching her and try to do anything to make her happy.

We are tired after three years. Sorry for the lack of updates but the nights I am home, I play with Tessa and then go to bed with her.

T

Wednesday, May 23, 2007 8:05 PM CDT

Tomorrow morning will be Day 30...WOW!!!!

Last time Noelle engrafted around day 28 so we are hoping for engraftment soon again. It is hard to be patient but we are trying. Noelle had somewhat of a similiar day to what she has been having lately. She has really been drinking the water (over 24 ounces today) which I am hoping is a good sign. Her liver tests were slightly elevated today so we started a new med for this. All other tests looked good. She receives platelets daily which is typical and red blood every 3-4 days. The doctor indicated that her skin looks like mild GvH which is a good thing.

Dave and I took Tessa swimming for an hour today before heading back to the hospital for art class. Noelle participated for 15 minutes which is great for how she has been feeling. She tries so hard to please even when she is feeling so crappy.

I have been showing her home videos lately to help build up her fighter spirit. I don't know if it is a good idea or not but she keeps her eyes on the video the entire time. It makes me sad and happy to see the videos. I don't know....I am kind of at a loss for words tonight.

Anyways,

T

Tuesday, May 22, 2007 3:54 PM CDT

Hello All,

It seems like forever since I have been able to update with some good news, but thankfully today I can share positive developments.

Noelle's labs were great today and her bleeding appears to have stopped. She has great organ functions, decent blood counts and more importantly is feeling much better. The doctors feel as if the surprise bleeding was a side effect of her treatment (maybe radiation and chemo.) most likely in the form of rough mucositis.

All we know is that we are not on contact isolation anymore, in fact, probably never needed to be on it (more than precaution).

Last night, Noelle slept next to me quite peacefully at times. She had a 5 hour stretch where she (and me!) slept straight. Yahoo! What a happy daddy that makes. She also was so pleasant to me in the night. She let me give her a kiss and several hugs. Praise the lord for small gifts of touch. There is nothing quite like a hug or kiss from your child to help you feel better. Thank you Noelle!

As is always the case, Noelle is showing her true tough spirit.

WBC .4 today, but showing many signs of engraftment (albeit slow). We will take slow and steady! Noelle's labs show good lymphocyte formation, which is great for fighting off cancer cells! Also, her hemoglobin stayed at 11.0 and platelets held through the night.

Well, glad to share good news! Take care all!

Many of God's Blessings,
Dave

Monday, May 21, 2007 11:38 AM CDT

Monday Night:

I just wanted to update quick. We haven't gotten any results back from any of the tests. We are continuing to hope that it is just from mucositis. Noelle has had two red blood cell and two platelet transfusions in the last 24 hours. Hopefully these will hold and help eleviate some of the bleeding. Also, the blood in her stool isn't bright red/blood clots anymore. It is more like coffee grounds (a medical term) which could indicate some healing going on in her GI tract. The blood in the urine could be a virus called polyoma caused by the Cytoxan (chemo) she received that breaks down the lining of the bladder. This virus will work itself out on its own. The blood in her vomit, I am assuming, is caused from mucositis. This isn't anything new for her....unfortunately. Noelle has been on Zantac for this so maybe we will add prilosec also. She has been on both in the past. She will also continue to get granulocytes from Dave for another three days which should help to relieve some of the problems.

Even though she feels crummy, she slept pretty well and asked to watch a video today which is a first. Usually she tells me she just wants to do nothing.

All her chemistries looked really good today. Her liver counts have gone down and her kidney counts look great. Her lungs continue to sound clear.

Will update more when I hear anything.

T

Monday Morning:
Hello All,

Last night, Noelle had blood in her urine, bowel movement and vomit. They are unsure of why, but have run every test known to man. She also can not hold onto red blood. She got a transfusion yesterday morning and by nighttime needed another one.

They have put her on contact isolation, as a precaution, and we are quite freaked out. Hopefully, the tests will reveal something minor.

We don't know...we will keep you posted.

Dave

Sunday, May 20, 2007 7:13 AM CDT

Noelle received Dave's granulocytes yesterday and today. SHe will receive them tomorrow again and then we will see how her WBCs do without them. Dave's cells are so powerful that they should kick out any germs or infections that may be brewing. Yesterday, he had 45,000WBCs and Noelle had 9,600 after the transfusion.

Noelle's mood continues to be trying. We continue to try to distract her with her favorite things. She walked in the halls for 1 hour yesterday. We alternated between her walking and me carrying her. She is so routine oriented that she knows exactly from what point to what point she walks and tells me everytime. If we go over that spot by a few steps then we have to reverse. It is funny.

She complains consistently of her tummy hurting and we are trying to soothe it with medications. I don't think they are really helping.

Tessa came to visit for the first time in over a week (her germs are finally gone) and Noelle seemed to really enjoy watching and reading a book with her. Tessa is the TRUE distraction we need. Mommy and Daddy just aren't the key to that puzzle.

Anyways, I am off to eat breakfast and figure out the day.

T

Friday, May 18, 2007 6:27 PM CDT

CHANGE IN RESULTS (for those of you who read previous update).

CHIMERISM RESULTS ARE IN

The doctors are confusing us about the results, so disregard my last post. Here is the result...

Lymphocytes were 92 percent donor and 6-8 percent my cells. No detectable pretransplant cells were noted. Yeah! This result means very small chance of rejection. Go engraftment go.

Granulocytes were 7 percent donor and 91 percent my cells. Trace pre-transplant cells were noted. This result means that she might be engrafting as she is putting out some neutrophils that are donor.

All in all the doctors said that the result was very "favorable." Dr. Parikh called to say that the lymphocyte test was the best result, as lymphocytes are needed to fight cancer cells.

So, we will update more when we figure this whole mess out. Not 100 percent donor, but not too bad either. We will wait to see until she has more cells and repeat the test.

All we know is that she has only a small detectable amount of pre-transplant cells and that something is going on as far as engraftment.

GROW CELLS GROW

Much Love,
Dave

Check out the new pictures.

Thursday, May 17, 2007 5:21 PM CDT

Noelle continues to hold her own. Her WBC's remain at .3 so we are starting granulocytes again tomorrow to ward off any infections and keep the mucositis at bay. She needed blow-by oxygen in the night. We switched to morphine so it really sedates her into a deep sleep which is good. However, then she needs oxygen while sleeping. Dr. Martin feels the oxygen is needed because of the side effects of engraftment.

I am anxious to get her engrafted and keep those organs healthy. It is so difficult to be patient. If it were up to her, she would lay on my lap all day. Lately, I have been pushing her to read books, do puzzles, walk and watch a little tv. It has taken her mind off of things these last two days so hopefully that is a good sign.

Anyways, I am off to the airport to get my mom. YEAH!!!!

Tonya

Wednesday, May 16, 2007 9:13 AM CDT

Day 22

I just spoke to Dave and Noelle's WBC count for today is .3. I guess most of Dave's cells are wearing off and her real count is coming through. All of her other counts look good which is a relief. We want those organs as healthy as possible. She seems to feel a tad/smidge better and allowed Dave to read her a book. She walked in the hallway and allowed us to hug her. You don't know how good it feels to hug your daughter and not be yelled at. It has been over a week since I have been allowed to hug her. I can't kiss her yet but am hopeful that is coming soon.

We will not give her Dave's granulocytes today and tomorrow to see her true WBC count. If it continues to remain low, then we will continue the grans again on Friday.

My mom returns on Thursday night. Dave's mom has been here since Sunday and will leave early Saturday morning. Tessa, of course, has had a blast with her Nana. Thank goodness Nana is here because Tessa has had a cold all week and we won't allow her on the unit. Noelle misses Tessa so I hope this cold goes away quick. Tessa gives Noelle some spirit to go to art class.

Anyways, I am off to relieve Dave.

T

Tuesday, May 15, 2007 8:29 AM CDT

Hello All,

Quick Update. Noelle is not getting my granulocytes for a couple days. She has a white count of .5 without my cells. We have changed her pain pump to Morphine from Fentinyl. She sleeps better with Morphine, but is still pretty miserable in the day. Side effects are still pretty yucky, including low fevers, chills, headaches, urinary problems, general pain, and mucousitis.

Talk more later,
Dave

Saturday, May 12, 2007 6:38 PM CDT

SATURDAY

The theme of today...the silver lining.

Noelle has a song she loves from the movie CARS. Last night, she had me download it to my phone and play it for her several times. The words are very fitting for where we are at right now.

The song is called "Behind the Clouds," by Brad Paisley. The chorus goes like this....

Behind the clouds,
the sun is shining,
believe me,
even though you can't quite make it out.
You may not see the silver lining,
but there is a big blue sky
waiting right behind the clouds.

Noelle continues to appear miserable. She wants to sit in the dark for hours and do nothing. And I mean nothing! She wants you to turn the lights out, not breathe, not move, not saying anything. Then, she just sits....and sits....and sits. If you move, she will tell you how to move back. If you breathe, she will ask you to stop. If you talk, she will politely say "please, don't talk to me."

Stormy, stormy clouds as it would appear. However, Noelle's labs have been better each day. She continues to show signs of engraftment. Also, a week ago, she was screaming non-stop for hours at a time. She was unmanageable. Now, she will comply, if given enough time. The only thing, she just wants to sit and do nothing. Her actions are definately her way to exert some control over her situation. And so be it. Every other night, I know that I will sit and marvel at my miracle girl. I will sit and thank God for moments of quiet reflection.

The silver lining is so apparent. She is getting better each day.

We just watched Alexia's confetti party, which reminded us that there is a "Big Blue Sky, Waiting Right behind those Clouds!"

God Bless,
Dave

MOTHER'S DAY

First and foremost, to all mothers out there, God Bless you and Happy Mother's Day. Now, to the mother of my incredible two girls, WOW! You are amazing. How can you describe a mother who cares not for herself and her own happiness, but only for her children. Superhero? Saint?

Tonya, I know we aren't in the best circumstance and I know that we have been challenged each and every day of the last 3 years. However, through it all, you have shown strength, courage, class, conviction and a tireless spirit for our daughters. You have given up your days and your nights, your weekdays and weekends, your holidays and regular days to ensure that we will see many, many more days and years as a family of four.

You represent what a mother should be. You are kind and compassionate, loving and caring, you have a beautiful spirit and a tough determination, but most of all you have LOVE in your heart and actions every day.

Every child would be lucky to have a mother like you. Our kids are so fortunate.

They love you so much, as do I. We all wanted to say we love you and are so lucky you are the mommy in our family. Happy Mother's Day!

You loving and devoted husband...D and your incredible daughters T-Bird and Plain Big Girl...

Thursday, May 10, 2007 7:37 PM CDT

I can't believe we have been in the hospital 3 weeks. Noelle seems to be making a shift up right now. Her fevers are gone, she doesn't need blow-by oxygen, we have weaned one antibiotic and her counts are holding a little more. Dr. Martin says we will continue to watch the trends. Noelle had a few good moments today which is an extremely exciting thing since she has had literally no good moments in over a week. Today she told us that she wanted to visit Amy, Patrick and Grace and she promised she would wear her mask. I thought that was the cutest thing and made tears come to my eyes. Amy and Patrick are her godparents and Grace is their daughter. I told her we would see them soon. I was so happy that she was talking about people outside the hospital again. A few days ago she wouldn't even admit that she ever wanted to leave.

(A funny thing for Amy and Patrick---Dave told Noelle that they were going to have a new baby very soon so we could visit the baby too. She told Dave right away that that was not true and she wanted to see Amy, Patrick and Grace only.)

Anyways, Noelle still continues to need her pain pump and we even upped it today as she has been throwing up more. She continues to have pain when going potty but her urine cultures have come back negative thus far. The doctor believes that the mucositis is in her uretha. (fun, fun)
We will take the bad right now with the hope that there is so much good in her future. We are climbing the step ladder of goals and we are almost to the first step.

Finally, Alexia had her confetti parade today. It was an amazing moment that I am so glad we got to be a part of. It made me cry because I was just so happy for their family. Alexia's doctors in Argentina told Ursula and Ignacio that there was nothing they could do but make Alexia comfortable when she relapsed. Here she is in remission and with 100 percent donor cells. What parents won't do for their children...They are a true testament to the goodness of humankind and this world. They will go anywhere to give their daughter another chance.

Tonya

Tuesday, May 8, 2007 7:45 PM CDT

Hello All,

I am exhausted (drained emotionally and physically). I don't know why I am so tired. It is the first time in 2 1/2 weeks that I am actually feeling the drain.

Noelle's WBC's were .5 without Dave's granulocytes today. Of course, some of his could have been left over in her body but it is a positive trend since last week's were .3. We are very happy with her progress thus far but are trying to take it day to day, moment to moment and not look too far into the future.

Noelle was crabby today---her words, not mine. However, she did do more today than she has done in a week. She even walked a little in the hallway even though you could tell it caused her lots of pain. We have routines built up for blood pressure, taking weight, temperatures, pulse ox's, etc so it seems to be a little easier on her. She still has a lot of pain going potty and tells me everytime she goes. She likes to hold it for as long as possible and the doctor is now giving her lasix everyday to push the fluid out of her body and keep her liver/kidneys working well. She is also on blood pressure meds. Yesterday's blood pressures were 140/90 and today's were 110/60.

Anyways, our good friends get their confetti parade on Thursday. We are thrilled for you Alexia, Ignacia, Ursula and Sofia. Another chance to be a family of four-----AWESOME!

Tonya

Monday, May 7, 2007 6:10 PM CDT

Hello All,

It has been almost 2 weeks since Noelle's transplant. Today, she felt a bit better. Her fevers appear to be low grade and almost gone. Also, she has a rash on her face, hands and feet. The doctor called it a "rash" not us, so we feel comfortable saying it is one. The fevers and the rash generally mean engraftment has started. We will see tomorrow, as her counts will be mostly without my granulocytes. Today, WBC count was 1.8. Tomorrow, we are hoping for .5 or so, since that would indicate that she is engrafting some cells.

Last night, Noelle needed blood and platelets, which meant that daddy didn't sleep much. However, Whitney did a great job trying to be quiet. She is very courteous at night and very helpful. We love the days that we have Mary in the morning and Whitney at night! They are a great team and we get along with both so well.

Well, gotta run and play with Tessa.

God Bless,
Dave

Sunday, May 6, 2007 2:16 PM CDT

Life continues to be about the same....The saying "same story, different day" applies to Noelle. She continues to feel pretty crummy most of the day and night. Her fever left last night for about 5 hours but returned this morning. She complained this morning of a headache. We will see if there are any trends in her white blood cells on Tuesday. That is the day she doesn't receive Dave's granulocytes. Right now, her WBC's are 4.2 thanks to Dave. His WBC's are 60 thanks to his GCFS/neupogen shots twice/week. All of Noelle's chemistries (liver, kidneys, etc continue to be normal). Thank God! The doctor indicated that her lungs sound very clear which is also a great thing. Right now, we are just trying to be patient. She is DAY 12 right now and the mucositis is supposed to hit its plateau.

Yesterday, Tessa, my mom, my dad and I joined many families, friends and staff in the Rainbow Walk to raise money for the Program SUpport Staff and commemorate the lives of the patients. It was an adrenaline rush for me. I really enjoyed seeing so many supportive faces. It was a rainy day but nice. Thank you to our best buddy, Kiera for bringing her whole family out in support of Noelle.

T

Friday, May 4, 2007 6:52 PM CDT

Noelle's fever ranged from 101-102 degrees throughout the day. We have started her on her third antibiotic, have a cooling fan on her, and oxygen on her. She continued to have a hard day but showed positive signs of making a turn for the better. She didn't require oxygen when awake and she went into the connections room to watch the other kids play and do their activities.

The doctor continues to be pleased by her progress. He indicated that these are signs of engraftment or an infection. We are treating for a possible infection and looking for signs of engraftment. Currently the signs she has are a slight rash, fever, cells retaining fluid, pulmonary edema which requires oxygen to move the lungs. We will have to wait and see. Dave's cells are working well and she isn't having as much mucositis as last transplant. The doctor also told me that she needed to get up out of bed and move or at least cry. It is hard for me to give out tough love right now. There is nothing I want more than to curl up in bed and cuddle her. However, I did make her stand and place stickers on her calendar to exercise those lungs. It was hard for both of us but she did it.

Anyways, we have met some wonderful families this week. Tessa, of course, has made two new friends which is always great to witness. Alexia received some awesome news today--engraftment and 100 percent donor cells. We are so happy for them.

T

Thursday, May 3, 2007 4:45 PM CDT

Hello All,

Last night, Noelle spiked a fever in the 104 range and was placed on oxygen while sleeping. Her pulseox showed oxygen saturations in the middle to upper 80s when she was off oxygen, so she needed to stay on it all night. This morning, her temperature was in the 104 range again and so she was started on some more antibiotics. Fevers could be a sign of many things...she does have a bladder/urinary tract infection. It also could be early signs of engraftment. Who knows.

All we know is that Noelle is really miserable and barely wants to get out of bed. Come on good cells, grow grow grow!

We just also wanted to say for everyone to really pray for good test results for our buddy Alexia. Her white count is a little high and they will need to wait until next week to know why. We just love Alexia and her family so much. They are great people! We believe it is just great engrafting cells!!! We love you Alexia!!!

Tuesday, May 1, 2007 8:19 PM CDT

Wednesday Morning

Dave and I both spent the night last night to tag team Noelle. I asked for a dose of Ativan at the end of her tantrum. She immediately fell asleep and slept on and off for most of the night. She received a blood transfusion early this morning and is now resting with a cold wash cloth/ice pack on her head. Her fever is higher than yesterday so we did blood cultures again to determine what may be causing the fever. Our nurse today has been very patient and kind. She waits for Noelle to be ready and hasn't pushed her to do anything. She has made some helpful suggestions medicine-wise and they have worked. Yeah!!!! Despite feeling awful, she seems to be more comfortable. Anyways, I hope to go home and spend the night with Tessa. It has been a few days since seeing her besides a few minutes in the hospital. Thank god for Grammy and Poppy....They have kept Tessa busy doing typical kid things and she seems so happy. My dad calls her the "ray of Sunshine"....that is exactly what she is to us. Her favorite thing yesterday was swimming in the 90 degree temperatures. I didn't even set foot outside yesterday....that's okay...my time will come along with Noelle's.

T

Tuesday Night

Noelle has been having some very rough days and nights. She spiked a fever today and was diagnosed with a UTI. Mucositis has set in for good and she just feels crummy. Feeling crummy causes her to be very angry. Dave and I are trying everything to slow down or limit the anger but nothing seems to be working. She has tantrumed for 2 hours right now and we are just tired. Getting her to comply to the hospital schedule (bl. pressures, temps, pulse ox machines, etc.....) is very difficult. Being in education, we have both maxed out our behavior plans and are hoping antibiotics helps instead.

Anyways, I am too tired to go on.....

T

Sunday, April 29, 2007 10:43 AM CDT

Here is my song I listen to everyday to pump myself up to take care of Noelle...

Keep Holding On by: Avril Lavigne

you're not alone
together we stand
i'll be by your side, you know i'll take your hand
when it gets cold
and it feels like the end
there's no place to go
you know i won't give in
no i won't give in

keep holding on
'cause you know we'll make it through, we'll make it through
just stay strong
'cause you know i'm here for you, i'm here for you
there's nothing you could say
nothing you could do
there's no other way when it comes to the truth
so keep holding on
'cause you know we'll make it through, we'll make it through

so far away
i wish you were here
before it's too late, this could all disappear
before the doors close
and it comes to an end
with you by my side i will fight and defend
i'll fight and defend
yeah, yeah

keep holding on
'cause you know we'll make it through, we'll make it through
just stay strong
'cause you know i'm here for you, i'm here for you
there's nothing you could say
nothing you could do
there's no other way when it comes to the truth
so keep holding on
'cause you know we'll make it through, we'll make it through

hear me when i say, when i say i believe
nothing's gonna change, nothing's gonna change destiny
whatever's meant to be will work out perfectly
yeah, yeah, yeah, yeah

la da da da
la da da da
la da da da da da da da da

keep holding on
'cause you know we'll make it through, we'll make it through
just stay strong
'cause you know i'm here for you, i'm here for you
there's nothing you could say
nothing you could do
there's no other way when it comes to the truth
so keep holding on
'cause you know we'll make it through, we'll make it through

keep holding on
keep holding on

there's nothing you could say
nothing you could do
there's no other way when it comes to the truth
so keep holding on
'cause you know we'll make it through, we'll make it through

Saturday

Noelle had an okay day. Mucositis has hit and Noelle was throwing up blood this morning after complaining of a stomachache all night long. She also continues to complain of her bottom hurting. The doctors indicate that the mucositis travels down the GI tract and peaks at around Day 12. We are at Day 4 right now. We have upped her Fentanyl but that brings along the side effect of itchiness so we are probably going to start a med for that also.

She has been tantruming more lately. I am sure it is a combination of lots of things--meds, control issues, pain, spending so much time in a 5 X 5 room, being a 3 year old. She will allow the nurses to do things but she has to control the situation by arranging herself on our lap perfectly before they touch her which takes lots of time. I think it can be hard for the staff to wait and they sometimes make the situation worse by talking to her way too much (not on purpose though). It takes a lot of patience on all of our parts. Transplant is much more difficult with a three year old than it was with a 14 month old. She is just too aware. Today she told my mom "I hate this place". I can't really blame her.

Anyways, I am tired and off to bed. I had a nice bike ride with Tessa today. She is still small enough to fit in the baby seat on the back of my bike. I think she enjoyed it but it sure tired me out after only a few hours of sleep at the hospital.

Please continue to pray for our sweet girl and us as well. I try not to think of all the things Noelle needs to accomplish to live but I find it creeping up in my mind all the time. If you would like to participate in the prayer fast, please email my friend Leslie at lbowers@parkdalemills.com or love4hunt@yahoo.com. She told me that she has a calendar filled until May 7th so far but has many, many more days to fill.

T

Friday

Hello All,

I know you are all waiting for an update, so here goes. Noelle continues to do well. Noelle is now on a continues PCA pump and receives granulocytes (white cells from daddy) every day. Since beginning these two things, her mood has changed to much happier. Now, she is able to cope a bit better with the pain and is less on edge, emotion-wise.

All of Noelle's labs look good! She has good chemistries and had 4500 white cells from daddy. Also, her platelets and blood hold for a couple days, so she doesn't need too many transfusions yet.

No signs of engraftment, yet, but things are really early.

Yesterday, the unit had a huge bash for the kids and siblings. We had a great time eating ice cream, having a big meal together, enjoying a balloon release (all the kids decorated a balloon and attached their name to it and then they were all released together), and Tessa had a lot of fun with the carnival games they set up in the hall.

Will add more pictures soon....

Tessa and Noelle have been lucky to get to know Alexia and Sophia. Noelle and Alexia chased each other in the hall way and played blocks together today. Tessa and Sophia played at the park and played carnival games together in the hall. Ursula and Ignacio are pretty cool, too, and have been hanging out with Tonya and I...so we have a great support with their family. They are quite special and we hope for a complete cure for Alexia, along with Noelle.

Well, God Bless,
Dave

Wednesday, April 25, 2007 8:05 PM CDT

Hello All,

Wow, day 1 already. It seems as if we were just getting down here in October and now look at us, already done with Noelle's transplant day. Wow! Today, the doctor said that Noelle is doing "exceptionally well for a 2nd transplant. Actually, she is doing really well even if she were a 1st transplant." Our Noelle is an incredible girl, no doubt!

Noelle has her PCA pump and we have taught her to ask to push the button and do it herself. They are trying to have parents not do it, so that the patients take care of their own needs. Thankfully, she is a big girl and likes to be in charge of herself! Well, we accidentally hit the button for her when she was too crabby and in lots of pain...but, hush hush, don't tell on us :o)

On a different note...I just wanted to remark on something that really touched my heart this last week. I know this doesn't seem like the forum for this, but I feel a need to share my feelings on this, especially given our new outlook on life. So, here goes...I hope no one is offended by the subject matter. I promise there is a great message here.

Recently, as you are all aware, there was a horrific shooting at Virginia Tech. and we were reminded of how one upset and thoughtless person can change the lives of so many. It was an incredibly evil act that reminds us of all the ills in our world. However, I was struck so differently by the reaction that people had from this event. The news (I believe that NBC was the carrier) broadcast the beaming, insane photos of this lunatic and discussed it for 7 hours. 7 hours! I shouldn't be, but I was shocked by the length of it. I mean, we live in the country that gave us 3 years of Jon Binet and 2 years of OJ for Pete's Sake.

Anyways, I was even more shocked by the next day's response. Viewers, average Joe's, regular people all across America did something I did not think I would see in my lifetime. They actually expressed a common disgust with the promoting of the MASSACRE at VIRGINIA TECH. They were outraged by the 15 minutes of fame we continue to give these monsters. I heard of many, many, many people saying enough is enough. I heard the banter of Why isn't there any positive news out there? Oprah held a show chastising NBC and read the names of the victims (showing pictures of them). The family of the shooter apologized in the most heart wrenching sad way I have ever heard. And you know what...the victims' families and students of Virginia Tech. reached out to them and consoled them as well (recognizing that their family was destroyed also). Finally, America seemed to get it. We need love in this life, not hate. We need to profess peace and harmony and to disuade anger and hatred. We need to promote the cause of those who suffer, not the instability of the wicked. We need a change America!!!

I bring this up because I have seen so much good in people. On transplant day for Noelle, we were overwhelmed by the intense support from our friends, family and our Caringbridge Family! We were overwhelmed by the letters, the continued financial help, the unbelievable compassion of the nurses on 5200 and our friends Kiera and Chris, the help from Grammy and Poppy, the strength of my three girls. We just are so unbelievably touched by the Goodness of America.

Why is that Goodness not broadcast? Why are the fanatics and the insane given their spotlight, but not the Noelle's? Noelle was on TV for 2 minutes, twice. Our benefit got a minute or two. Why doesn't the suffering of the innocents get 7 hours?

So...I have tried very hard the last week (spurred on by America's digust with the portrait of evil thrust into our eyes) to say nice things to those who have helped. To smile a lot in the halls. To appreciate what I have. Margaret, my mother in law, said she is going out of her way to talk to people who look like they could just use a kind word. Amen!

I challenge you all to do this during the upcoming days. Turn off that junky news on TV. Skip over the hate and the evil in the newspaper. Spend a minute talking to a random person who could use a compliment. Don't take credit for something you have done or do a random act of kindness and not tell anyone who did it! Smile a lot and love even more.

Help Noelle make the world a brighter place!!!

Much, Much LOVE
Dave

Tuesday, April 24, 2007 8:38 PM CDT

Tuesday Night

Noelle received her new immune system easily with the exception of raised blood pressure. Nothing a little medicine couldn't fix. She had a harder day today so we have begun the PCA Fentanyl Pump to give her some relief from pain/mucositis. She had a rough night having to use the potty chair every 45 minutes. I finally ordered some Ativan which helped her sleep for 4 straight hours. However, we both woke up wet since she didn't wake up to go to the potty chair. I will remember to use a pull-up on her next time when on heavy sleeping medicine.

When she was feeling better early this evening, Dave told her that she got her new cells and now will be cured. She looked at Dave with her huge eyes and said so innocently but intently "awesome". Then she slapped us both five. Boy, did Dave and I smile. Also, Dr. Driscoll told us today that Noelle is doing exceptional right now.

Thank you to Kiera, Chris, Grammy, Poppy and Tessa for joining us in our intimate celebration of Noelle's new life.

Also, my good friend from previous transplant, Leslie, is organizing a calendar on a prayer fast for Noelle while she in on 5200 until she has her confetti party. She did this with her daughter, Erin. They were in and out in 32 days (including chemo, engraftment, and discharge). If you are interested in doing this, please email her at: lbowers@parkdalemills.com or love4hunt@yahoo.com.

Thanks so much....

Tonya

Tuesday Morning
Day 0 has arrived. Noelle will get her transplant at 2:00 pm today. We are nervous with anticipation as we wait for her new immune system to arrive. We know this...the radiation and the chemotherapy took care of the bad cells. They are wiped out. Now, we need her new immune system to keep them away for good.

We wish for nothing more than a little thing called a miracle. That's not too much to ask, is it? :o) Deep, way deep in our souls, we know that Noelle has travelled a long journey to show us all a new and happier way to live. She has been the example of love and perseverence, of strength and courage, of faith and facing fears head on, of staying connected to family and friends, of reaching out to others and being part of a larger community, and most of all a sterling example of grace and dignity despite one's circumstance.

May you all find your personal strength today as we muster all we have to help our daughter beat this wicked disease.

Here's to a new life, cancer-free.

God Bless,
Dave

P.S. Noelle, you rock girl! You deserve your cure!

Day -2

Sunday Night

Noelle had her final dose of Cytoxan this morning. She took it like a champ for the majority of the day. She played computer with Tessa, walked to get her mail, rode in her pink car, did a few puzzles and read some books. She snuggled with mama for nap and then woke up with the beginnings of mucositis. She threw up once and just wanted to lay on my lap the rest of the night.

Dr. Szabolcs said that he was very impressed with how she is doing despite the TBI and Cytoxan.

Tessa had a great day. She spent most of it at the hospital and then a few hours at the pool with Grammy and Poppy. It was an overall nice day. Even though we have only been in the hospital two days, the time has been nice. I hope it continues this way until our confetti parade.

Tonya

Day -3
Saturday Evening

Noelle had her first dose of Cytoxan this morning. She did well and was in good spirits for the majority of the day. She painted with Tessa, played My Little Pony, watch some videos, read books and ate little bits.

She amazes me with her strength. I remember telling people at my sister's wedding how she always pulls through for me in the end. I can't think of a more appropriate time than now when that is so true. Her white blood cells were <.1 so the radiation truly did what it was supposed to.

We had a good first night together at the hospital. She complained of stomach aches through the night but the Oxycodone seemed to help. She also gets great sleep laying on my chest with her little butt up in the air. I am more than happy to oblige even though I don't sleep that well.

Today she and Dave had chest xrays to check their lines. Dave's film came back good and we are waiting on Noelle's. Her new line is not drawing which is a big bummer.

Dave, Tessa and I got out for dinner at Cheesecake Factory (thanks to grammy and poppy) and to see the Body Exhibit. Tessa has been begging to see this exhibit for a long time. It was very interesting to see the things we hear about from Noelle's doctors each day. I was amazed at how much Tessa knows already about the body. She loved the lung display especially the ones that showed smoker's lungs. She also loved the intestine's display and told me all about how it works. She also did the typical kid thing and told us which one's were girls and which were boys. I just had to laugh and beg her to whisper.

Anyways, I am exhausted. My body is not used to the hospital so I think it will be a shower and early to bed.

T

Saturday Morning

We feared the what-if monster when we waited to have Noelle's second transplant. What-if we wait too long? What if she is not strong enough for her 2nd transplant? What-if she can't get into remission for the transplant?

Well, thankfully, we have been relieved of many of those what-ifs... Noelle checked into 5200 today and she appears to be in good health and good spirits after radiation. Our old Noelle is back. One who smiles a lot, gives hugs and kisses, gives happy words freely and who has a will to live. We are overjoyed by the fact that she appears ready to take on this new transplant. She even had zero blasts.

Thank you God for saving us from a life of what-ifs by giving Noelle this chance to live.

Tomorrow, Noelle gets a very serious chemo. to try to knock her bone marrow completely free of her 1st transplant's cells. It will be rough on her and we are very nervous for her. However, we feel she can do it and we have great hope that the radiation has killed every last cancer cell she had.

Please pray for her complete recovery from the drugs and that the new graft will take hold and provide a long, cancer free life.

Dave

P.S. For those of you who have suggested that we meet Alexia's family...We do know them and they are an incredible family. In many ways they are like us...two beautiful girls, two incredible parents, and a 2nd transplant that will cure Alexia! We look forward to sharing many memories with them in the upcoming months. In case you don't know their story, their site is www.caringbridge.org/southamerica/alexia . Here's to many good times and positive memories, together!!!

Thursday, April 19, 2007 12:42 AM CDT

Six radiation sessions down, two more to go...

We check into the hospital tomorrow. I am so anxious but excited for Noelle to be cured. I am nervous to be back again just because I feel like I know too much, have too many memories and can picture good and bad moments around every corner.

Noelle gave us a great piece of news today----0 blasts. Now we need to see a trend in this forever. Noelle's mood has been tremendous. It just proves that her mood was caused by illness and not personality. Our Nurse Practitioner, Debbie said today 'now this is the Noelle I remember'. Thank God for medicine, doctors and medical teams no matter how much they drive us crazy.

We said see you later to all our nurses at clinic. We got so many hugs. It was amazing to see how loved Noelle is. Dave got his dressing changed and flushed. It was interesting to hear him voice what he feels since Noelle has been feeling this for three years now.

Anyways, the next time you hear from us will be from 5200 in Duke University Hospital. We are joining our friends whose daughter is also three and also having her second transplant.

Tonya

P.S. For those of you asking, there is a picture of Dave and Noelle in the view photos section on the website.

Wednesday, April 18, 2007 4:11 PM CDT

Five sessions of radiation down, three to go.

The afternoon sessions have been rough on Noelle. She is just having a lot of trouble waking up from anestethia in the afternoon. Today, when we got home I gave her a dose of oxycodone and she has been in an awesome mood. Tessa and Noelle are playing so nicely right now. I love it and am soaking every minute up. They are playing birthday party and Tessa is wrapping toys up for Noelle to unwrap. It is so darn cute. I wish I could share it and actually I think I will video it.

Dave is doing well after his line placement. He is sore and rested all afternoon. We are so proud of him.

Noelle's blasts are down to 28 percent today and her white blood cells are .4. We are thrilled and can't wait for remission.

Anyways, I am off to get the video camera and to sneak some food into Noelle. She has lost 2 1/2 pounds and that is a lot of weight for her.

Oh, by the way, her pre-transplant studies have found her to have a hypothyroid. It is pretty significant so we started synthroid today. Hopefully, this will help her mood.

Tonya

Tuesday, April 17, 2007 4:11 PM CDT

Three radiation sessions down, five more to go......

Noelle has done very well with these first three. I have found it hard to take deep breaths but I force myself. Dave gets his central line tomorrow morning while I take Noelle to radiation.

Noelle is actually feeling much better than the last few weeks. Her blasts dropped from 72 percent to 40 percent with one radiation dose. I am excited to see this and have high hopes for tomorrows labs after three doses. The radiation has made her nauseous and tired but overall she is doing super. Everything continues to be on pace for Friday's check-in. Transplant is on schedule for April 24th.

I have been busy packing and getting Tessa signed up for classes to keep her busy. She will continue Gymboree, attend two mini-gymnastics camps in June and hopefully play soccer and t-ball. These things should keep her distracted.

We enjoyed all our visitors this last week---Doak, Erin, Chris. It helped get us revved up for the next few months. Now, we are trying to focus on the task at hand...getting Noelle cured.

T

Sunday, April 15, 2007 7:52 PM CDT

Hello All!

Check out the new pictures! What a cutie! Daddy and Noelle cut their hair off. Noelle didn't want the frustration of losing her hair to radiation and daddy didn't want Noelle to have to be alone in her baldness!

Tomorrow is radiation. We are very, well, ILL waiting for it to happen. We feel so sick for Noelle that she has to have this done to her body. However, the radiation cured her CNS and spinal cord Leukemia so we are also very hopeful that it will ultimately cure her.

5 more days of freedom and then we check into the hospital. We finished our shopping today to get the final necessary things to make the stay as comfortable as possible. We got comfy clothes, food, toys, books, a teapot, etc.

Daddy, gets his central line this week. Then, 2 shots of GCFS a week to boost white cells and 2 rounds of pherisis a week. Pheresis is when they take out a bunch of your blood into a machine, take out the white cells from the blood and then pump the blood back into your body. I am not afraid to do any of the central line things, in fact I am excited. Wait, hear me out, I am not a masochist. However, getting a line will allow me to give my blood to help Noelle survive and it will allow me to feel many of the pains Noelle has felt over the last couple of years. I will have the line placed under my collar bone and into my jugular, I will know the pains of GCFS (which are serious bone pain), I will know what it is like to have blood drawn and weekly injections, as well as the dreaded dressing change! I look forward to gaining a new appreciation for some of the things Noelle has had to do to survive. I will be forever closer to her!

Well, gotta run help Tonya get Noelle to bed.

Dave

P.S. Noelle had another great day today. We even went for a long bike ride!!! Awesome!

P.S.S. Noelle will be cured, we just know it!!!

Saturday, April 14, 2007 8:24 PM CDT

Hello All,

I know I have been avoiding updating the site for a while, and just putting in my sporadic two cents, but it is not because I have forgotten all of Noelle's supporters. Noelle has been having some pretty hard nights and days and we have just been so exacerbated with fear and anxiety about what is ahead of us. I will try to help Tonya more to keep you all informed. You all have supported us so very much and you deserve updates.

First off, we just wanted to again thank everyone for your help, gifts, well wishes and prayers. We appreciate it so much. In the past, we have tried to send thank you cards to all of our supporters, but we wanted to tell you that we just don't have energy right now to do it. Please accept our most sincere thanks on this website for all that you all have done for us.

Noelle has had a pretty good last few days. She is smiling again, playing with Tessa again, and we even went to an outdoor restaurant today! Wind in our sails! We really needed Noelle to rebound before the transplant. Both Tonya and I were afraid that she wasn't strong enough for this transplant, but she has really turned it around the last few days.

Prior to the last couple of days, Noelle was saying things like "I don't care if I get better," and "I don't want to be healed." I can't describe adequately how dejected we felt from that attitude. We felt that maybe she was giving up! However, it was a very bad yeast infection that was prompting poor sleeping and miserable days. Add into that some Leukemia pain and general weakness.

I am glad to say that the fighter Noelle has re-emerged. Praise the Lord, just in time!!! Thank you God for re-energizing our will and carrying us through our darkest times. We are scared senseless and very weary to our battle, but we will push on. We take our lead from Noelle and she is again proclaiming "I will be healed!!!" The power of a positive attitude :o)

I would like to take a special second to thank my aunts and my mother for putting on a benefit for Noelle in Michigan. Special thanks to Aunt Marty for the organization and to Aunt "Bunny" and Aunt Kris, as well as my cousins and my mother and the Moose Lodge and all the other helpers who put together the big event. I love you all!

Well, off to help Noelle get to sleep!

Many, many, many of God's Blessings!

Dave

P.S. Noelle will be healed, we just know it!

Thursday, April 12, 2007 10:43 PM CDT

Dates are swimming in my head as I look at the date. Friday the 13th is only an hour or so away. We left Wisconsin on a Friday the 13th six months ago. I can't believe we have been here that long. I was telling my sister, Erin, in one of our many long chats this week how threes are so apparent in Noelle's care----April 3, 2005-remission, June 3, 2005-relapse, October 3, 2006 relapse, April 3, 2007-decide to go to second transplant. Anyways, I am rambling.....my mind is racing....today was a long, long day.

Erin and I brought Noelle in for her fifth line at 6:30 this morning and brought her home around 1. Then Dave and I went to sign tranplant consent (a horrific meeting of side effects, statistics) and found out one of us needed to go home to get Noelle and bring her to clinic. She tested positive for a line infection which could be gram positive bacteria or yeast---not words you want to hear when you are about to take away her entire immune system.
We finally got our exhausted and sore baby home around 9 tonight. I can't believe what she is going through and this is the easy part.

I did see a few smiles today which light up my heart. Noelle's transplant is April 24th if all goes well. This will be her last chance at a cure. We are "going for broke" according to Dr. K. I didn't ask her what would be broke but know it would be my heart forever. I am trying not to think about that thought.

I want to thank Erin for visiting this week. You are an awesome sister who is always there to listen, complain with, crab at and love. Thanks for giving me such a wonderful gift this week---a distraction.

T

Wednesday, April 11, 2007 5:21 PM CDT

Hello All,

Well, the transplant is really going to happen (again!). Noelle is feeling horrible. She sleeps or cries 95% of each day away. Her head hurts a lot and she had a bad yeast infections. She is on multiple pain meds.

Radiation starts next Tues. and she will get 8 doses, one each morning and one each night for 4 days. Then, we begin our hospital stay (next Friday). Two days of chemo. and a day a rest puts us at a week from next Tuesday (April 24th) for transplant.

I started my process to get a central line to donate granulocytes to Noelle. I had 15 tubes of blood drawn today and will consult with them Friday. Next week, I will get a central line and have been ordered to have iron pills and eat red meat daily (wow, a steak a day, that sucks hahaha).

We'll post more soon,
Dave

Sunday, April 8, 2007 1:08 PM CDT

The difficult times continue for Noelle. Yesterday, after much, much prying Dave finally got her to admit that her butt hurts. We were able to deduce that she had a yeast infection with a possible urinary tract infection (waiting on the results still). It was like have all the pieces of the last week fall into place for me. All the clues were there but I just wasn't able to pick up on it. I spoke to Dr. Parikh and he indicated that it made sense and he wanted to check her diaper area but she was too upset. I guess she wasn't too upset though to send her to CT or the ultrasound room. All those results came back normal, thank god. I also guess she wasn't playing me and was really having a problem she just couldn't verbalize.

She is currently sleeping. She is miserable and is just not in a good state of mind. We feel helpless and just don't know what to do. Easter has been just another terrible day with the exception of Tessa. She has been so happy and loved finding each and every one of her eggs. What would we do without her happiness?

Dave brought back the latest Newsweek for me titled "How I Live with Cancer". It is amazing to read and describes our life to a tee. I would recommend it to anyone who wants to enlighten themselves. Jonathan Alter is able to put into words what so many feel. For example, he states "a woman I knew who was dying of breast cancer told me that none of the pain she was suffering at the end of her life compared with that first month and the daze of diagnosis". I cannot tell you how true this is. We have gone through this three times now and it just gets worse. He also states "every cancer doctor would do well to recalibrate on occasion the balance he or she strikes between science and hope" and how doctors are "unnecessarily cruel". I feel that I can't escape this cruelness each day. I know that the medical professionals are not doing it on purpose but each day they just cause me to hurt more.

Anyways, my wish for the day is to have Noelle find one moment of happiness to eat or find one of her plastic eggs. Isn't that all we wish for our children?

Tonya

Friday, April 6, 2007 3:32 PM CDT

It has been a busy week and there is only more to come. Dave left on Wednesday to get financial and house things settled up. Thursday, Noelle and I met with the radiation doctor. It was three hours of waiting for a five minute appointment. Her great words of wisdome were "Noelle's lungs will cause me to loose sleep". Wow, just when I didn't think I had enough to worry about. Then Noelle had 10 tubes of blood drawn to check for every virus know to humans (maybe animals too). We don't want her going into transplant with any surprises.

Today consisted of kidney function tests, platelets, liver ultrasound (I guess the CT scan was a little grainy....whatever that means...just more to worry our wee little brains).

Noelle has been consistently in a foul mood. No one can do anything right. Don't tap your finger, wiggle your leg, turn on the light wrong, carry her wrong, rub her back with the wrong hand, give her water with the wrong cup, call her baby kitty, call her Noelle, etc, etc..... I emailed the doctors yesterday and told them that I am at my wits end. They have got to do more to make her comfortable. Dr. Parikh had the nerve to tell me that she could be "playing me". I am so emotional lately that I burst into tears. I know that children know how to pull strings but this is not that. What should I do? Give her a time-out for having 46 percent blasts.

I asked if we could switch chemos but he wants to give it another few days to get into her body. For now, we have her on Ativan, Oxycodone, and Methadone scheduled.

Next weeks is filled with more and more tests.....echos, EKGs, pulmonary functions, more ct scans, signing consent, another line placement. Dave or I will get a line too so we can donate granulocytes. We will donate them to her when her body is trying to engraft to keep away some infection. We need all the bases covered.

Anyways, I hope to have some happy times this weekend. Noelle deserves it before the "hell" starts. Dave and my mom return tomorrow. It will be nice to have some extra helpers.

T

Wednesday, April 4, 2007 5:35 AM CDT

We have begun setting up Noelle's transplant. Today's blasts were 39 percent with 10 percent variant lymphocytes. This is not the birthday present I expected for her. She is miserable and had maybe 5 minutes of happiness yesterday. She continued to scream at us all day long. No one could do anything right by her. Then she would cry "I am not feeling so well". It was horrible to watch and my heart kept breaking over and over.

Noelle will begin on oral chemo today to keep the blasts down. We will start pre-transplant checks next week--meeting with the radiation doctor, pulmonary check, echocardiogram, another line placement, etc. Radiation will begin the following week Monday through Friday twice/day. On Friday she will check-in to the hospital and then begin receiving Cytoxan (a very strong chemo) and ATG (I hate that one). She will tentatively receive her new cord blood on April 25. It is already picked out for her and has mismatches in different places than the last one to invoke a stronger reaction and hopefully allow it to find all the leukemia and kill it.

I am trying not to focus on the statistics because they are very low. The risks are also very high in a second transplant.

I just want my baby cured so she can feel better. We now have her on two pain medications to help her relax a little. Dave leaves today to go home to get some more of our things. We don't have much of anything because we flew here with one suitcase each. We are trying to make a list of what he needs but just can't even remember what is at home. All I know is it is just things...

Insurance is another issue....we have around $500,000 left and a transplant is $600000 so the doctors/financial advisor are working to get Noelle's Katie Beckett Medicaid to cover down her. Dr. K also may have us become residents of NC so we can get another Medicare for her. I don't know....I am scared about all of this.

I am so thankful that the money raised at the benefit will pay our living expenses or we would probably be looking at selling our house and car in Kenosha. Anyways, I guess I am just kind of numb right now. I just am hoping Noelle experiences some happiness today. I want to run in the grass with her again or at least just see her a little calmer and more relaxed..

The birthday cards and presents continue to roll in. Thank you so much for it all.

Tonya

Monday, April 2, 2007 8:11 PM CDT

Thank you to all who made Noelle's birthday so special. We had packages arriving everyday. I told myself I would keep good track and then everything fell apart and my list became lost. We so appreciate all the gifts and well-wishes for our sweet baby and those for Tessa, too.

So much has changed in one week. I will usually think to myself "I wonder what our life will be like next week" and then that day comes and our lives have changed slightly again. Noelle's blast count has risen to 30 percent. We were devastated to hear this news on her birthday. She has cried, tantrumed and cried some more for a week straight. We now have her on pain management every 12 hours. She has been complaining of headaches on and off for months but they have seemed unbearable this last week so today she had a CT scan. She made it through the scan without sedation. I held her leg and told her stories the entire time. At one point, I felt like I was yelling because the machines became so loud. Dr. Parikh called to let us know that the results were normal tonight. Whew! He thought maybe the bone marrow in the skull might be causing pressure or there is pain in other places and she is having trouble localizing. It is so difficult to actually know with a three year old. We have been playing this game for quite some time now.

We also spoke about a plan regarding transplant. Dr. Parikh indicated that we could still wait a little while since her white blood cells are below normal (2.1). We will speak to Dr. K and Dr. Parikh more about this tomorrow. Noelle is weak right now and I want her as strong as possible before she receives total body irradiation twice/day for a week and then a very strong chemo.

As for now, Dave is flying home Wed. to settle some of our home issues since we are now going to be down here for many, many more months/possibly a year. He will drive my parents car back so we have two vehicles down here. With Noelle in the hospital, it is getting harder to coordinate two vehicles (especially when we have to run to the hospital at 10pm like last Wed and Dave had the car).

I think we are both numb and angry right now. We feel a cure is within our grasp but we just can't get there. We are also exhausted---a nurse from CT who I have never met before tried to comfort me today as I cried in triage.

Anyways, I have rambled on too long. There are some wonderful things about our life and for this we are very thankful. Tessa went swimming today and Noelle put her feet in. We went for a nice walk together in the sunshine. We all went to dinner by the riverwalk and ate pizza. Then we played tag barefooted in the soft green grass (even Poppy). For these things, we are truly thankful.

Tonya

Sunday, April 1, 2007 2:28 PM CDT

Check out the new birthday pictures. We will share more the next couple of days. Praise the Lord I am three. Now, let's work on that CURE!!!

Happy Birthday, my sweet baby!

Today has been filled with smiles and tears. Life sure is interesting.....We are never, ever going to give up on you.

We are so thankful that you are in our life. You bring us more laughter than I ever thought could be possible. My favorite joke you tell is "waiter, what is this fly doing in my soup? It looks like the back stroke, sir". You laugh and laugh every time you tell it just like Tessa did when she was your age.

My birthday wish for you is an uneventful transplant with 100onor cells for the next 100 years.

I love you so much!

Mama

Friday, March 30, 2007 4:08 PM CDT

Noelle is being discharged from the hospital in about an hour. We are happy to be leaving to be home with Tessa, Grammy and Poppy. We are also happy that she will be able to spend her birthday at home versus the hospital. She seems to be feeling better and no cultures have grown in her blood. She complains of headaches so we will continue to monitor this consistently.

On the emotional front, what can I say....what do you say when you have three of the best things happen to you in life (Dave, Tessa, Noelle) and one is hurting and dealing with this awful, grueling disease. We will give Noelle her last chance of survival---one we hoped we would never have to use. It is a devastating reality just like it is a devastating disease. It just never goes away---It is an evil, evil disease that takes over your life. I am sad and depressed. I am trying not to think of where we would be if Noelle had not relapsed again. I am trying to take it day by day and focus on the day when she will be cured.

This transplant will be difficult. Noelle is just so much more aware of what is going on. She cried for most of the day yesterday about wanting to go home, not wanting the nurse to access her line (only mommy), not wanting to sleep in the bed, yelling about the nurse turning on the light in the night. All these things, we dealt with before but she just wasn't aware of it. She was 14 months old the last time she was in the hospital long term and now she will be three.

Total body irradiation scares me so much. She will have to be sedated twice/day and then will check into the hospital for intense chemo/conditioning. Dr. K doesn't feel that Noelle needs to be in remission for this transplant. I guess AML is different than ALL in that perspective. This fact also scares me.

Anyways, I am tired. Noelle didn't sleep well at all last night and neither did I. I just need to gather my own strength back to get ready for this next battle. I know I will be able to do it but I just don't want to.

Tonya

Thursday, March 29, 2007 7:05 PM CDT

Today, we feel very low. We met with Dr. K and Dr. Parikh and the Mylotarg was a failure. It did not help Noelle get into remission, in fact, it didn't appear to really help at all. Noelle still has a significant amount of disease and we are down to our last options.

They are...1. We keep her comfortable for her final days, or 2. We try another transplant (which has a much smaller chance to succeed). This transplant would include full body radiation, serious chemo. and a new cord blood.

Tonya and I have decided to go with the slim odds of the transplant. A chance is still a chance. The final factor for us was Noelle. It won't be easy to watch her suffer with radiation and conditioning chemo., as well as all the tough days right after transplant but...Noelle is a fighter and she would want to try. We know it...she has told us. She has continued to say very, very definitively that she is not ready to "be an angel."

So, we will respect her wishes and try, try, try.

Please hold Noelle in your prayers as we send her on the path of pain and suffering. At the end of her road, just maybe she will find a miracle.

Dave

Thursday, March 29, 2007 8:24 AM CDT

Noelle spent the night in the hospital. When we arrived her fever had soared to 104.2 degrees. She was miserable and breathing heavily. Antibiotics, tylenol, wet gauze reduced it to a better level within a few hours.

Dr. K called to tell us Noelle's biopsy of her spinal fluid came back clear which is great news. We continue to await the results of the bone marrow biospsy. However, her blasts were 9 percent last night with 12 percent variant lymphocytes which is not a good sign. Dave and I are sad with these results. Now Noelle will have to endure more and different chemo to get her into remission. We will see what the doctors say....

T

Wednesday, March 28, 2007 9:35 AM CDT

Dr. K and Dr. Parikh have looked at the slide. However, due to Noelle's low counts, it was very difficult to actually come up with a conclusion. They indicated that blasts were present in the minority. We will have to wait until Friday for biopsy results done with more indepth technology.

Noelle is feeling horrible. She is crying constantly of headaches and stomach aches. The nurse practitioner had to go in with the needle three times in one hip and two times with the other plus a needle in the spine. I don't blame her in the least for feeling awful. I have seen the needle many, many times and it is not a small needle.

Well, until we hear some results. Don't you just love anticipation. My stomach feels like it is going to burst with stress. I have to remind myself to take deep breaths.

T

Monday, March 26, 2007 2:47 PM CDT

Tuesday, March 27, 2007

THANK YOU Shiloh Elementary School. We are so blessed to have such wonderful people looking out for us. We loved everything---the personal cards, the pictures, the sidewalk chalk, the jummp ropes, the pencils. Thank you so much for the gift of money. It was so generous of you to think of our family. Because of you, we will be able to take better care of Noelle and Tessa.

Noelle is home now from her BMA/LP. She did well with the anesthesia (sp)and seems happy. Dave and I will go back later tonight to get some prelimary results and talk about another initial plan.

Tonya
Monday, March 26, 2007
Yesterday and today have been yucky days for Noelle. She just feels bad overall. We have stopped the steroids and her WBC's are growing in so the combo is enough to make anyone feel bad.

Thank you to all who continue to send birthday gifts. We are so blessed and Noelle is having the time of her life opening all the presents. Quite a difference from last year. She sat in the corner playing with an old toy while Tessa opened her presents. Thank you Haley and Lisa for the Pet Shop Animals. That present was a huge hit for both and we have been playing with them the whole day. We hope you feel better soon Haley. We love you guys.

Tomorrow is Noelle's big day---spinal tap/bone marrow asprit. I am trying hard not to think of it. We know that she will not be in remission because she continues to have blasts in her peripheral blood but we are hoping for an improvement over February's results.

T

P.S. For those of you wondering----Noelle is our April Fool's Baby.... I always wondered about this when she was born but I know she will fool those doctors when she is cured.

Friday, March 23, 2007 8:04 AM CDT

Noelle continues to do about the same. She had some stomach issues yesterday when we were eating lunch at an outdoor patio. I felt bad for the other people there. I had to run to a corner and let Noelle throw up. There wasn't any other options available. Grammy saved the day with a paper plate. The joys of chemo....

Noelle's counts yesterday were less than .1 WBC. If you remember from transplant, this means that Noelle's counts have literally bottomed out. She has no immune system.... I have never been so happy to hear this news because it means that the Mylotarg is truly working. If it is working on the WBC's then it just has to be working on those blasts.

It is going to be in the 80s here this weekend so we hope to do some things outside minus people. We know a few parks that are usually empty so that is probably where we will end up. Noelle is feeling the greatest so she is content to lie in our arms on the lazy boy. Poor thing! I am sure we will go in for platelets today and Sunday. Have a good weekend.

Tonya

Enjoy the pictures of the past. I thought it was only appropriate considering Noelle's Birthday is coming up. All this happened before leukemia changed our lives. Also, our camera is broken and I don't have any new pictures to update.

Wednesday, March 21, 2007 11:21 AM CDT

We are continuing to play the waiting game with Noelle which is fine by us. I would love to play the waiting game for 20 years if it were possible. Noelle continues to have good and bad moments in the day but always amazes us with her strength. She had a wonderful day yesterday and just seemed to enjoy life. She was happy and cheerful, waving and talking to all the clinic staff. Quite a change from Monday---she tantrumed almost the entire time until she received blood, platelets and antibiotics. I know what it feels like to be anemic and it is not fun. Noelle's blood transfusion doubled her hemoglobin so it is obvious why she was happier on Tuesday. Her WBC's continue to be .3 so that Mylotarg is really working on those cells. Her blast count was 2 percent yesterday so it continues to be present but at a low range. She continues to need platelets every other day and she continues to have low grade fevers on and off.

Anyways, just a quick update. We are off to get platelets right now. Life is busy with all these doctor/clinic visits.

T

Friday, March 16, 2007 9:08 AM CDT

The Mylotarg continues to drop Noelle's counts which is what we want. Her WBC-.3, lymphocyes-100 percent (which means no blasts or variant lymphs but also means no segs/bands (what fights virus/bacteria). This morning she had a low grade temp so we are watching it closely. She is at extreme risk because of her lack of immune system. Anything over 101F gets us put in-patient so we are being pretty careful.

A lot of people asked me what Mylotarg is so I wanted to clarify. It is a big gun chemo as described by the doctor. It kills/targets only the cells that have the CD33 marker on them and most of Noelle's cells have this marker (which is a good thing).

We have a bone marrow scheduled for March 27. Wouldn't that be an awesome birthday present for Noelle? Remission.....

Well, I am off to get Tessa to school.

Tonya

Tuesday, March 13, 2007 8:23 PM CDT

Quick message after our 6 hour day at clinic:

Noelle continues to hold her own. WBC-.4, Hemoglobin-9, Platelets-13, Blasts-9 perecent. She received a platelet transfusion today. We saw Dr. Kurtzberg today who indicated that Noelle is responding to the Mylotarg which is good. We will do a bone marrow asprit in two weeks to see how her marrow is responding.

She has been in good spirits for the most part which is excellent. We have been doing things outdoors because of her lack of immune system. She seems to be enjoying this and the weather is cooperating great. Gotta love nice weather, daffodils, tulips, birds singing, buds on the trees.

My dad's surgery went well and he is recovering nicely. He hopes to join us in a few weeks before Noelle's birthday.

Tessa had a great day at school and at the park. She made new friends at both places. She has a true gift for that.

Tonya

Sunday, March 11, 2007 5:51 PM CDT

Noelle will be healed, we just know it!

Hello All!

Greetings from our new place in NC! We are so excited by the change and the new attitude. Our townhouse fits our new attitude, bright and sunny. Noelle is in a great mood today. She slept through the night last night...the whole night. 9 pm to 7 am. Yahoo! Of course, she slept with her daddy, so why wouldn't she? Haha. Tonya says she probably woke up about 20 times, but being a guy, I just didn't hear her (or ignored her :o) ).

Labs today looked great for the most part. Hemoglobin is holding at 10.1, Platelets are 95, and chemistries are great. Blasts are 10 percent and Variants 1 percent. However, she has been averaging 7-8 blasts and 6-15 variants, so this is an improvement.

Noelle has had just a few side effects from Mylotarg. Her head hurts a lot, but Tylenol seems to do the trick. Bathroom issues still abound (but to save the grossness, I won't talk about that).

We are great. Our attitude really is cheery. We have gone to a plan where I sleep with Noelle at night and then sleep in a little in the morning. Noelle seems to not be so dependent on me, so sleeping with me is easier on her. Also, Tonya then gets a lot more sleep. We are all a lot happier for sure! And you know what they say, happy sleep makes for a happy daddy... :o)

Wow, were we excited by the turn out and money raised at the benefit. It was the highest total for a benefit that any of us have ever heard of. I can not believe that nearly 900 people stopped by! Awesome. Praise the Lord and his ability to rally the trooops. Noelle is his little poster child.

Tessa got to play with Dylan yesterday. She liked it a lot. They live very close by and so she will see him more often. Today, we went to an outdoor restaurant (oops! we cheated on the organic diet today). Shhhhh...don't tell the thousands of people who follow Noelle's website! HAHA. Well, once is a while, we all break the rules, huh?

Time for dinner, so the wind bag will be quiet. Hope you all have a glorious week and enjoy many blessings.

As the great Tigger would say, TTFN (TaTa for Now).

Dave

Friday, March 9, 2007 6:26 PM CST

I am exhausted so I can't even imagine how Noelle is doing it. We were at clinic from 9-6 getting Noelle's second dose of Mylotarg. She had a range of emotions today but took the second dose much better than the first, no major fevers or blood pressure dips. She has been complaining of headaches but that is a symptom of Mylotarg too (I think.)
Today's blast count was 9 percent so we are sending positive vibes to her cells and the Mylotarg to get to work. Her platelets have held since last Sunday so we are pleased with that. Her chemistries are varied and we have had to give some IV support to these. Overall, she continues to be such a fighter. The love I feel for her and Tessa is amazing. Tessa spent the day with Grammy and at Gymboree for pre-k class and fitness class. She had a blast and made a new friend. That girl can make a friend in an instant....She walks right up and says "hi, I'm Tessa, what's your name?" She is truly a unique individual. I wish I could make friends as easily.

Grammy has been a huge help this week. She cleaned the old apartment, helped moved, was our chauffeur, cleaned and did laundry, and made dinner. It has been awesome. She has had a sleep over with Tessa twice since being here. Tessa, Grammy and I went shopping twice for groceries and small gifts. It was fun! Our new place is huge compared to the old apartment. We are loving the new space.

Thank you to our new buddy, Kiera for visiting and the gift today. We can't wait to get to know you better.

Thank you's also continue to go out to the awesome benefit workers, guests, supporters, etc. Our finances are no longer a huge stress in our life and we can now focus on getting Noelle better.

Tonya

Wednesday, March 7, 2007 6:20 PM CST

Hi, it's Auntie Erin, I'm updating for Tonya cuz they won't have internet or cable until Friday in their new place, and she knows by then you guys will really be wondering what is up :-)

Anyway, things are going okay with them, the move went well and they are relaxing in their new home. Noelle is doing fine, she will get her second dose of Mylotarg on Friday, so definitely keep her in your thoughts and prayers. My mom made it back on Monday and my dad is still home in Kenosha with me. He is having hernia surgery on Monday so keep him in your prayers too.

Well I'm sure Tonya or Dave will give you a better update Friday but until then, remember there probably won't be any updates.

Sunday, March 4, 2007 7:13 PM CST

THANK YOU, THANK YOU, THANK YOU, THANK YOU!!!!!!!!!!!!!!!

Oh, my gosh, we don't even know where to begin. We are overwhelmed with love and support. Even though we weren't there to witness it, all the wonderful phone calls filled us in on what was happening in a small little town called Kenosha. We love each and everyone who supported us today through the benefit. You have helped us get through this leukemia experience in the past and have now given us momentum to get through the next stage. Thanks to you we can do this next stage as a family of four together.

Please fill us in on a memory or detail from the benefit so we can expereince it through your eyes by leaving a message or two in the guestbook. We can't wait to hear all about it.

Tonya, Dave, Tessa and Noelle

Saturday, March 3, 2007 11:52 AM CST

A message from Julie Redmon, our dear friend who is hosting Noelle's Benefit tomorrow in Kenosha, WI. We are indebted to her for her kindness, generosity and hard work.

I would like to invite you all to come to a Benefit for Noelle Naylor! Many of you know her, but for those of you who do not, she is an amazing 2 1/2 year old little girl, who is battling leukemia for the third time. She is the youngest daughter of one of my dearest friends, Tonya Naylor (Dave Naylor), and I just love her and am amazed by her every day! Noelle and her family have already endured so much due to this cruel disease, but they are all fighters! Noelle will likely have to have a second cord blood transplant to save her life and will also most likely max out her medical insurance with this second procedure. We (the friends & family of Noelle) are holding the benefit to help support Noelle and her family with the expenses they are incurring due to this courageous fight, as well as to show them an out-pouring of love. Please help us by coming to her Benefit on Sunday, March 4th, 2007 from 2-6pm at St. Mary's Catholic Parish (Bell Hall) located at 7401 40th Ave. in Kenosha, WI. Admission is available at the door at a cost of $7 for adults and $4 for children 10 and under.

I am so very excited about this event and just want to share with you some of the great things that will be happening there.....raffles, silent auctions, live auction, 50/50 raffles, D.J., magician, food and more!!

Some of the items highlighted in the LIVE auction are: Art, 1-hour Discovery Flight, an opal and diamond pendant/necklace, Handmade Quilt, Child's Birthday Party package, Sporting tickets/packages, "American Girl" Doll & accessories, golf package, Noelle's framed art and more.....

Other things to consider...many themed baskets...grilling basket, chocolate lover's basket, martini baskets, game night, Buck's Basket, gardening baskets, beach basket, beer baskets, Italian baskets, scrapbooking baskets, Milwaukee Basket, restaurant gift certificates, Birthday Party gift certificates, spa services, and so many more in both raffles and silent auctions. There is really something for everyone! So---Please consider making it a family event and come help us support Noelle and her family!

A message from me:

The weather has been beautiful the last two days so we have spent time outside at the park. We have started to pack and move things to our new townhouse. We are excited about a change. Noelle's counts haven't been the greatest lately----blasts have been 8 percent yesterday and then 15 percent today. We are bummed but trying to keep our heads up.

We wish we could be with all of you tomorrow at the benefit.

Tonya

Thursday, March 1, 2007 4:04 PM CST

We believe Lord, yes, we believe. Noelle will be healed.

Today, Noelle is having some struggles from the Mylotarg. She is in the clinic right now getting platelets and she already received a red blood transfusion. She may also need potassium, as she has been having a hard time clotting (Vitamin K helps with that). However, the blasts are down to 2 percent! Yahoo! The Mylotarg is doing its job.

Her mood has been a bit down, but we have started an all positive thinking effort. We have told her and she has repeated after us many times today that she will be healed. Our mood is soaring with our infusion of positive thinking. We know it will be hard to be positive all the time, but Noelle's life may depend on her spirit keeping up. As we all know, kids often take their sense of well being from reading the emotions of their parents, so we will be strong for her.

Last night, Tonya and I watched a video called "The Secret." Thank you Amy. Tonya has also been reading the book. Thank you Heather. It had a great effect on our mood and we plan to try to "will" Noelle into healing. The video talks about the power of attraction and attracting positive things to your life by believing they will happen. It really is a life changing philosophy and we will set out on the course of making that will a reality.

Noelle will be healed, we know it!!!

Thanks to you God! We are grateful for all you have given us. May we continue to always know your love and appreciate every precious moment you give us. You are great!

God's Blessings to you All,
Dave

P.S. Tuesday we will be moving to a 3 bedroom townhouse. It is awesome and we are excited.

As of Wed. the new address will be:
203 Ivy Meadow Lane
Alexan Farms
Durham, NC 27707

We will not have a phone, so our cell phones are the way to reach us!

Wednesday, February 28, 2007 9:06 PM CST

Noelle will be healed. We know it. Everyday we will remind ourselves of that. What the mind wills, the body can achieve. Noelle will be healed.

Tuesday, February 27, 2007 9:39 PM CST

It was a long, long day. Noelle had a rough night and woke with a low fever. We called Michelle and she said we should bring Noelle in for fluids and more antibiotics. We don't want to take any chances with her counts now being so low. Dave and Noelle started the adventure at 11:30 while I brought Tessa to lunch and then she had her two classes at Gymboree. (Can I just say how thankful I was that Tessa had class and didn't have to spend the day at clinic?) I dropped her off and headed to clinic where I took over and Dave left to pick Tessa up. Noelle's blood pressure was very low 70/30's and her fever was 99/100. She received fluids until 8pm, two different antiobiotics, a chest xray, platelet transfusion and a stress dose of hydrocortisone. All this seemed to perk her up and when we left, she walked out to the car all by herself. She is my hero over and over.....

We met with Dr. K, Dr. Parikh and Michelle for about an hour to discuss everything in detail. She feels Noelle's graft has pretty much failed. She feels that it is smart to try the Mylotarg and we will have to wait to see the results. Today Noelle's blasts were 6 percent. She indicated that Noelle is responding to the Mylotarg. She also indicated how careful we have to be now with Noelle. She has to be on the neutropenic diet again which leaves Dave and I confused. We have felt so strongly these last months in her organic, natural diet. We will have to educate ourselves again on how to work within these new boundaries. She also indicated how careful we have to be with supplements.....she absolutely can have nothing with yeast or fungus. These are lethal combinations in a body without an immune system.

She also indicated a second transplant is necessary but when to do it is a crap-shoot (her exact words). She says the research varies---do it right away, do it 15 weeks after Mylotarg to give the liver a chance to rest, or do it when the blasts reappear again. A second transplant will require total body irradiation so giving Noelle time to develop is always a positive. Total body radiation will cause learning delays and development delays. She also told us that Noelle's body responded to cerebral spinal irradiation which is a great sign---her body is radiation sensitive (something you never wished for when you had a child but are glad about in a twisted way). Another positive she mentioned is that Noelle's disease is less effective compared to the past. She has not blasted off (a term Dave and I hate but hear it over and over). She now has a smoldering disease but a disease none the less.

Anyways, did I say it was a long day? We are trying to take in all these details without overwhelming ourselves with long-term details....living arrangements, work, life, our future. I guess we will ignore these details for another few weeks. I won't say it will be easy but we will at least attempt it.

T

Monday, February 26, 2007 8:33 PM CST

Noelle had an okay day..... Her white blood cells are down to .9 which is the lowest they have been since August 2005 (wow)....That Mylotarg is working fast. Her blasts are now 7 percent, they were 24 percent the day she received Mylotarg. We just keep praying that it will get all of them.

She continues to have a cough/cold on top of everything else which worries me since she is now considered neutropenic. If you remember, that means that her immune system is no longer strong and has trouble or can't fight off germs. Today she received her last dose of antibiotics and will not receive another dose unless a fever comes along again.

We spent a little time by the pool today in the sunshine. It pepped all of us up and gave us some positive/happy energy to get revved up for our miracle girl.

T

Sunday, February 25, 2007 8:26 AM CST

Noelle stayed the night with Dave on 5100 (a pediatric floor) because her temperature just would come down. It was above 103. She received antiobiotics throughout the night and fluids. When Tessa and I arrived at 11am on Saturday morning, she was sitting up in bed with no fever. We were discharged at 5pm and need to go to clinic each day for antibiotics. Of course, now that Noelle's immune system is trending down our whole family has a cough/cold. Noelle has it too. She was coughing all night, throwing up mucous, and complaining of a headache.

We will now just wait and see. Noelle will receive another dose of Mylotarg 2 weeks from the first. We should know results 4-6 weeks after the first dose. We will just continue hanging out in Durham.

Thank you to everyone who has helped us along. Thank you to all who have helped with the benefits. Thank you to Mrs. Lauzon's class at Providence who sent Valentine's cards to Noelle. Every little piece of mail, prayer, gift all has helped make these last weeks a little more hopeful.

Please pray for Bryce who has now become an angel. When I spoke to his mom in October, Bryce had beaten the odds and gotten in remission. Unfortunately, it was only for a few months. Please pray for his mom and dad and four brothers also. In the midst of their pain, his mom, Susie, called to check in on Noelle..... a true representation of human kindness.

T

Friday, February 23, 2007 8:26 PM CST

Sometimes they say the treatment is worse than the disease....

Noelle started her treatment today at 9am. She did well and was happy for the whole day. I was impressed because the nurse practitioner scared me with the side effects. However, at 5pm just as we were about to leave, Noelle spiked a fever of over 103 and her blood pressure was low. The nurse practitioner indicated that she would double Noelle's fluids to get her blood pressure back up and they gave her Tylenol for the fever. She said that these are side effects of the Mylotarg. At 8:30pm, she hadn't improved. Dave and Noelle are currently in the BOPP (a tiny little room on the in-patient floor for temporary visits) room as I type this at 9:30pm. They said she could leave when everything stabilized but then how would they get home. I have the car and Tessa is asleep. Do I wake Tessa in the middle of the night to go get them? She has a cough so she needs her rest. Is it fair to let Dave and Noelle stay in that horrid room on a single cot all night? I am just so disappointed and scared. I am drained from being at clinic for 12 hours and I am drained from leaving my baby and husband there.

Please pray for our family like you have never done before. I don't think I have the energy to pray like I have been doing. Please God hear our prayers....Let one survive.

Tonya

Thursday, February 22, 2007 2:22 PM CST

"Careful what you wish for," I guess is in order. I was hoping for direction in our course for Noelle's health, and today we got some unfortunate news that made our decision very easy. Noelle's bone marrow had shown that she had 17 percent blasts. However, we didn't get the whole report. Today, while in clinic checking Noelle's glucose level, we got the full bone marrow report.

Sadly, Noelle has only 61 percent donor cells left. Her host cells have come back to 39 percent, of which 45.5 percent are blasts. Her donor cells appear to now be losing the battle and losing ground rapidly. In November, she had 97 percent donor; then, she developed the platelet issue and we majorly suppressed her immune system. She has never recovered from the suppression and now is paying the consequences of that decision.

We consented to try Mylotarg today and it will be given tomorrow morning. Within two weeks, we should know if it has been successful in reducing her leukemia. However, it appears as if not all of the cancer cells have the cd33 marker that is attacked by Mylotarg, so we know that Mylotarg is just a temporary fix. It will not cure Noelle nor put her in remission. It is possible that her immune system, coupled with Mylotarg, could knock the cancer down. This is a long shot, though, as the Mylotarg also kills the good cells that have the cd33 marker as well. So, when we need her immune system to fight the most, it will be seriously suppressed. She will be considered Neutropenic again, which means that her immune system will be unable to fight a lot of things off. Kids who are neutropenic are more susceptible to small illnesses, like colds and fungus, etc.

Back on isolation we will need to go.

On the positive side, yes, we still have one of those :o) Noelle's platelet problem is getting better. Her platelets have held for 7 days, including being 95 today. Thankfully, she is making some progress in that fight.

Tonya and I are trying to hold it together. We are stressed and have very few ways to get release from the stress. Friends and family can understand and help us by praying and supporting us, but sadly, this is a fraternity you only truly understand if you are unwillingly initiated. The hardest thing when you go through this is that you can never take a break. We can't leave, go anywhere, escape the pain or fear or worry, we can't take a "time-out," or vacation from our life, or breathe without a crushing feeling, or sleep, or help Noelle get better.

We know this is our life and we thank God for it. Would we trade it? No. That would mean no Noelle and the pain we feel for her means nothing compared to the love she brings to our lives everyday. Thank you God. We know that we have many gifts in our life, both seen and unseen. We know that we have each other. We know we have love and time together. We know that Noelle has so VERY MANY supporters and we are able to help Noelle because so many people have poured out their hearts and their generosity to support us. We know that we have two of the most incredible, intelligent and good humored children ever! And we have you and your love God. In all things are the Lord. We won't forget that.

See you all on the other side of Mylotarg. Pray it works wonders.

God's Blessings and Love,
Dave

Thursday, February 22, 2007 0:54 AM CST

"Whatever we do, this leukemia will keep coming back", "there is small hope", "her GvH was strong so another transplant may not be strong enough", "everyday/every month we wait to do another transplant and total body radiation puts Noelle at another month's growth"

These are all words spoke to us by our transplant doctors here and at home. We are listening to our doctors and have every intention of doing everything it takes to keep our daughter alive. In fact, we are listening to Dr. K and Dr. Parikh.....Their belief is that Noelle's mind and body is growing by leaps and bounds right now and doing total body irradiation (TBI) will stunt this. Of course, doing another transplant means TBI so they have counseled us to try to get Noelle every week and every month she needs before this needs to happen.

Since someone seems confused (a concerned professional) in our guestbook, our plan is to keep Noelle's blasts low enough to buy her more growth time. If the blasts become over 20 percent (the plan between Dr. Parikh, Dr. K and us), then we will do Mylotarg to give her even more time. Dr. K and Dr. Parikh are in agreement with this decision. We will continue to do this until another transplant seems like the right thing. It is even made more difficult by the fact that a second transplant is Noelle's last chance. Once you agree to do it, you have no options left if it fails. So, we don't want to give her the last option too soon, before we see if we can help her any other way.

We question our hearts and souls everyday in our decisions for our daughter but are very educated in our decisions. We do not need doubt in our guestbook from an anonymous writer. If you would like to email or call us and express your opinions, please do so. Otherwise, don't write. It kills us to go to bed thinking about your words when we face this question everyday. We are honest in our journals with our feelings and with our decisions and only look for support from our family and friends, not doubt.

Tonya

P.S. Do you honestly know how many kids we have seen go to second transplant and survive? One that we know of in three years. Going into another transplant should NOT be a decision to take lightly. Don't you agree?

Wednesday, February 21, 2007 1:25 PM CST

God, the torture. Noelle's blast count is 18-20 percent today. Banging our heads on a wall is all we can say to describe this agony. Each day we get bad news, the next we get a little hope. Each day we have hope, the next day we have despair. We are stuck in a whirlpool of uncertainty and keep hoping for a life raft. God, please, we have not asked for very much. We have tried to serve you and accept your will, but please end the roller coaster ride. Give us a course of direction and let us be on that path, we can't take the twists and turns anymore. The cancer that is hurting Noelle is destroying our will to simply go on. Please give us direction before we are all lost....

D-

Tuesday, February 20, 2007 7:46 PM CST

Noelle had a good day at clinic. She and Tessa were in exceptional moods which made a 5 hour day go quickly. Noelle received her last dose of Rituximab to help her platelets. She had a tranfusion on Friday and currently has 136 platelets which is quite good considering where we have been the last few months.

Noelle's blasts were 11 percent today down from 22 percent last week at this time. We see it as a huge improvement but Dr. Parikh didn't seem to agree. He indicated it was about the same. He brought up going into transplant right now and we would have less risks since she is so strong. Dave and I do not agree with transplant at this moment. We see Noelle currently getting stronger. Our hope is to cure Noelle without a transplant but then that is a long shot. We research alternative and natural supplements for hours each day. Maybe something might just work.....you never know.....

We want to personally thank the Madison crowd, Quaker Steak and Lube, the Damaschke's, Katie and Aleah for all their help with this weekend's benefit for Noelle. It sounds like it was a huge success. We found out yesterday that long term disability is not going to work out for Dave so the paychecks end in a week. This benefit and the benefit in Kenosha on March 4th will be our financial survival. Thank you from the bottom of our soul.

Tonya

Monday, February 19, 2007 7:56 AM CST

I haven't written or checked Noelle's site very often in the last few weeks. Everytime I do, I start to cry and I figure I do that enough during the day so I have avoided the site and other sites. I guess I am just feeling sorry for myself and my family. What's a girl to do?

Noelle continues to hold her own. We will be making a decision regarding Mylotarg today when we get the counts. Her blasts have declined slightly which is a huge sign in my book but we know how leukemia is and are not holding our breath for too long. I am so anxious to put chemicals into her body and I am so anxious to not put these chemicals into her body.....if that makes any sense.....

I just sit here and can't believe our life. I have so, so, so much love for my daughters and hope that it is enough to get us through as a family of four.

Anyways, I am going to spend some precious minutes with my cuties.

Tonya

P.S. Thank you so much to my mother-in-law for all her help and support this past week.

Friday, February 16, 2007 10:10 PM CST

Reality- a. something that exists independently of ideas concerning it. b. something that exists independently of all other things and from which all other things derive.

The frail borders that separate reality from perspective keep our hearts captive.

The reality is that Noelle's body gets sicker, slowly each day. Her perspective is that her legs just hurt a little more and that her body slows down just a bit more, but she can still stand and walk and try to chase after her sister.

The reality is that Noelle has never been like other children, totally care free and unchained by cruel fate. Her perspective is that she wants to potty train, and please her parents, and wrestle her sister, and eat food the other children eat, and just be a normal kid.

The reality is that our decisions for her very life lie a short distance away. Her perspective is we will always be together the way we are now, loving each other, holding each other, looking after each other.

The distance between our reality and our perspective is coming together rapidly. The reality is that we need to proceed in Noelle's treatment and nothing can halt that decision. Our perspective is that some miracle will slow this decision, will cure her body, will free us of the pain we are about to cause her.

Our perspective mirrors reality in just one way...cancer is cruel and unfair.

May God grant us wisdom for our decisions and help us understand the very real hell we are entering.

D-

Friday, February 16, 2007 5:05 PM CST

Hello All,

Noelle's blast count was 14 percent today. We don't want to mess around with the possibility that the blasts could take off and her cancer get much worse; therefore, we are going ahead with the Mylotarg on Monday. We will see where that road takes us. The side effect of Mylotarg is neutropenia, or very low immune functioning. Noelle will need to go on isolation again. So, tonight we went out to a regular old restaurant to celebrate our upcoming isolation from the world. Noelle chowed down on Chinese food including a spring roll and Lo Mein. It was not organic, but very tasty. Yes, we fell away from the diet for one meal, but I think Noelle deserved to choose the restaurant and to eat whatever she wanted for one night. We will keep you updated on her counts and how well we are doing.

On the positive side, Noelle is in a great mood and she is doing well taking her medicine, etc. We are pleased with her overall well being (minus the cancer of course :o( ). She is definately a fighter!!!

Dave

Thursday, February 15, 2007 1:50 PM CST

Updated counts... Blast count Wed. 7 percent, Thurs. 9 percent.... so lowered blast counts are good. White count is low at 3.3, so we have some more time to think of what to do.

We are unsure of why the counts are lower, but feel that re-starting the supplements and natural medicine has something to do with it. At least, we hope.

Dave

Tuesday, February 13, 2007 9:43 PM CST

Hello All,

Tonight, I will start with some good news. Noelle had a spinal tap and the fluid was clear of any cancer. She has not relapsed in her spinal fluid, which is great news for her chances for overall survival.

Sadly, however, Noelle's bone marrow shows 15-17 percent blasts. Her disease has tripled since October. We have a short time to decide on a course of treatment. Also, Noelle's cancer cells originally were showing a marker that made them susceptible to a drug called Mylotarg. Mylotarg attacks cells that show a CD33 marker. At this point, about half of Noelle's cancer cells are showing that marker. This result means that we can use Mylotarg, but it will not kill all the cancer cells.

Dr. Parikh indicated that they feel as if only a second transplant will have any chance to cure Noelle, albeit a slim chance. Mylotarg does not appear to be an option for remission, but more an option to buy Noelle some more time to grow before a second transplant is needed.

We are devastated by the news that Mylotarg can not be used to get her in remission. She is in a brain "growth spurt" right now, where her mind is growing by leaps and bounds. A second transplant would include serious chemotherapies and full body irradiation. We know that this treatment will affect her brain and body development, possibly very severely.

It is hard to think of how awful these side effects will be...Those of you who know Noelle know that she is very intelligent. Last year she scored into the superior range in intelligence and speech. Radiation and chemotherapy will affect those areas significantly. We joke that with an intelligence in the 120 to 130 range, Noelle has some brain cells to spare :o) However, we know that a second transplant has such devastating effects.

We will not give up on Noelle! We have decided to do Mylotarg on Friday or Monday to "buy" Noelle some more precious development time. Then, we both have come to the conclusion that if we need to think about a 2nd transplant, that is exactly what we would do.

We have decided to give Noelle a chance, albeit slim, to live. If we need to have her try a 2nd transplant, we will do it! A slim chance is better than no chance. We believe Noelle would want to have a chance to live. She said to us the other day "I don't want to be an angel." I truly believe that was her way to tell us that she wanted to fight with all her heart and soul. Her proclamation was a sign to us and we will do what we can to keep our Noelli Belli on Earth with us. God willing, we will be able to...

God's blessings to you all and may you find guidance in your children's words, like we have.

Goodnight,
Dave

Tuesday, February 13, 2007 2:12 PM CST

Hello All,

Blast count today...22 percent. Slowly but steadily moving towards unbelievable heartache.

Dave

Monday, February 12, 2007 9:11 AM CST

We just received the update that Noelle's blast count today is 20 percent so yesterday must have been a fluke. Please pray for our family today as we feel like our hearts are being ripped out. All these ups and downs....We are off to the hospital right now.

Hey All,

I can't believe how numb and crabby I am today. This awful headache doesn't seem to help either.

Noelle has a bone marrow aspirit and spinal tap scheduled for 4pm today. I am a nervous wreck awaiting all results as usual. We will let you know when we have more information. This life is dreadful......

Tonya

Also, Tracy Zastrow (a speech therapist I worked with) is looking to find people who are members of Thrivent Financial for Lutherans. If she can find 5 of them to volunteer at the benefit, plus get the appropriate paperwork filled out and approved...there might be chance that she can get matched funds up to $5,000. If anyone knows anyone in this group, please email jredmon1@wi.rr.com asap? Thanks so much.

Sunday, February 11, 2007 4:38 PM CST

In fields of despair, seeds of hope.....

Noelle's blast count was down to 3 percent today. Although one day doesn't make a trend, we will at least sleep better for one night.

Dave

Saturday, February 10, 2007 5:25 PM CST

Hello All,

As we can tell from the counter on Noelle's site, there are many people awaiting an update. I wish we had great news, but we don't. We do have neutral news, though, so that is a start.

Noelle's counts today were platelets 7,000 (we got a transfusion this afternoon), WBC 4.7, hemoglobin 8.0 (we will need blood tomorrow), and blasts 17 percent (no change from yesterday).

Noelle is still in great spirits. We took the girls to the circus today!!! We went after clinic and her transfusion and everyone had a great time. We hope her mood stays high, as it will keep ours high as well.

We have put her back on all of her supplements (which we somehow allowed the doctors to convince us to cut down dramatically). We also have her on 1 or 2 more. We will not quit on her! We know now that if she will survive, she will need lots of alternative help...so, the supplements will go strong no matter what choice we make for her.

We meet on Monday or Tuesday to decide on a plan for her. We will think hard and pray for guidance to make a decision. We may try something called mylotarg, which can fight leukemia. This plan would be before or instead of a transplant. Who knows?

We will let you know as soon as we have a plan, as we know you are all anxiously waiting with us. We know you guys love Noelle like we do and we will try our best to let you know her progress.

Thank you for your vigilant prayers and concern for Noelle. Together, we all will beat this!!!

God's Blessings,
Dave

Friday, February 9, 2007 1:21 PM CST

I just got off the phone with the Dr. at Duke. The cancer test that was run yesterday indicated that Noelle has 23 percent blasts in her blood (which generally indicates that there is more in the bone marrow). At this point, his feeling was that we needed to go right into a 2nd transplant. He is not our doctor, as ours is in a conference in Colorado. However, he indicated that he did talk to Dr. Parikh on the phone and they felt this was the best option.

We have faced a lot of decisions in the last 30 months, decisions about the life of another person. Sadly, we know that whatever we chose leads to very painful circumstances for Noelle. I don't want to be God, so why do we need to chose how to save her? We don't want this responsibility. If only there was another way...

We know there is not.

Thursday, February 8, 2007 12:02 AM CST

Dear Friends,

We are scared. Noelle's counts have been suspicious for the last couple of days after being so good for a while. Her platelet situation won't resolve and her counts are now concerning to us. She has had a bunch of variant lymphocytes (which can indicate problematic cells...cancer maybe) and today she had 5 percent blasts. Also, her hemoglobin is dropping more rapidly and her platelets have been really bad the last couple of weeks.

Today, we dropped of a flow test to see how many cells have cancer in them. We felt we were having some positive success with the low number of blasts the last month, but are afraid the happy feeling was temporary. We have watched so many kids relapse in the last couple of months and have heard so many stories of kids not surviving this awful disease. We are scared our road is headed right over the falls.

Please keep Noelle in your prayers, especially today. We hope we can write with some good news in the next week, as we have felt nothing but fear this week.

Dave

Tuesday, February 6, 2007 7:51 PM CST

Today was a long day at clinic ---Noelle received Rituxan (the IV that should help platelets) and IVIG (IV for immune system). Noelle's platelets were 218 on Sunday and 146 today which we are pleased with. Her labs were a little suspicious with 10 percent variant lymphocytes. Dr. Parikh looked at her blood and indicated it looked a little atypical but could be caused by the virus she has. It was a little stressful for us as usual. We will do labs again on Thursday to look at the cells and her platelets.

Noelle's cultures came back positive over the weekend so she will continue to receive Vancomycin twice/day IV. She continues to be a little irritable but in good spirits the majority of the day.

T

Sunday, February 4, 2007 6:32 AM CST

Noelle is doing well considering the bumps she is dealing with. For three days in a row, her platelets have been less than 10. Yesterday, she fell in the kitchen and three huge 1/2 dollar black bruises appeared with a lump underneath. Dave and I are so nervous with her. She is our little fragile girl who is very active lately (something we dreamed of for her all year). She also bleeds from her mouth (sores on tongue, split lip, sores on insides of cheeks) and nose. All of these things are a result of platelets being low.

Therefore, we have discontinued the medicine that was supposed to help platelets. The side effects of the med actually caused her to have low white blood cells, hemoglobin, and platelets. Kind of ironic.....We have begun Rituxan and she will receive this IV every Tuesday bumping our Tuesday clinic day to 8-10 hours. If her low platelets continue today, then we will double her steroids for less than a week. All with the hopes that blasts will stay away..... It is a fine line we are walking according to the doctors and we don't want to tip the scale.

She remains on her IV antiobiotic twice/day which seems to be helping the bacteria in her body. She hasn't had any more fevers and all cultures remain negative.

Anyways, I will draw labs this morning and every morning to see if platelets are low and if we will have to go into clinic for a transfusion. Can I just say how much easier my life is with Dave here? I am so thankful that he is here. He is my partner in all this and eases my stress of getting labs, doing meds, sleeping etc.

Tonya

Thursday, February 1, 2007 10:01 AM CST

Update: Dave is at clinic with Noelle. They called to tell us her platelets are 6 and she tested positive for gram positive infections in both lumens of her central line. We will start Vancomyicin morning and night. It is kind of a relief to find out something is actually wrong. Her counts have been dropping, she has not wanted to eat, she has been having more tantrums than usual, etc....Hopefully this is the explanation and we can treat it and move on. She got one dose of antibiotics for a fever yesterday and she slept through the night last night. I can't remember the last time she slept for 9 hours straight. WOW!

Anyways, I am off to spend some quality time with Tessa. She is my buddy---and loves the hobbies I love. We are going to make some posters for the benefit in March. Fun, fun...

Tonya

Hello All,

It snowed here today. We just got in from a half an hour of throwing snowballs and sliding in the snow. A little piece of home when we need it the most.

Yahoo!

Dave

Tuesday, January 30, 2007 10:19 PM CST

Parents are supposed to teacher their kids lessons, that's what age and wisdom allow us to do. Right?

I work at a school for troubled youth. Although I am not the actual principal (I am just the designee), they call me the principal. Heck, most of the time, they respect me like the principal (albeit not in a language always suitable for children).

I took the job at Hillcrest School after Noelle got sick. Despite our struggles, I wanted to run Hillcrest school. No, I needed to run it. Noelle, her situation, the wisdom of children taught me that I must be part of a bigger community. I must use my gifts to bring along the rest of the world. Yes, I still believe I can save the world. Learned that in Grad. School and still believe it today. I can not do it by myself, however.

A wise person taught me that I need others as much as I need myself. That concept is hard for me, as I had to be very independent growing up. This person taught me that with a smile and a kick ass attitude, I can survive things that challenge me. She taught me that I can win the battles that I fear. Most of all, she taught me that I don't need to let life dictate me...I don't need to let circumstance own my existence. I can look circumstance in the face and I can say "not me, you will not dictate this person."

Noelle Naylor taught me all of these things. She gave me strength to take one of the hardest jobs in Kenosha Unified. She gave me courage to face my fears, forgive the wrongs that have been done to me and to share my gifts with the world.

The wisdom of children.

I wanted to share the wisdom of another special child we have come to know through letters, e-mails and kind gestures. Her name is Lily. She is Noelle's age. Her family has been supportive of our family (even though they don't personally know us) since they heard about Noelle's story.

Every night, Lily prays for Noelle. Now, parents can make their kids pray. However, they can't make them feel the prayers. They can't force them to believe. Caring has to come from within the child. We received this prayer for Noelle, that was said for her by a child her age. A child who doesn't know Noelle, but who feels for her. A child who has never hugged Noelle or talked to her, but who wants her to be ok. A child who is wise and compassionate beyond her age. I will leave you with her prayer and this thought, "Let your children teach you, for they teach only from the heart."

Lily's Prayer
"Please God make Baby Noelle better, otay?
Please.
You have to God.
Do you hear me?
Do you hear me?
You have to make Baby Noelle all better God."

She then turned to her mother and said, "God is not here right now. He is in her (Baby Noelle's) mama's house with her."

Thank you Lily for reminding me why we need to give our gifts freely to others and for no other reason than to care. God Bless you, sweetie.

Goodnight All,
Dave

Monday, January 29, 2007 12:37 AM CST

Hello All,

Today is a cold day in NC. Yet, we have warm hearts and firey spirits. Noelle's mood is good and we spent the morning at the library. We are surrounded by mountains of books, yet the girls can't seem to have enough (which makes us happy to have two bookworms). We read some books, checked a few out, and returned home. Noelle went for a nap (which means Tonya did too :o) ) and Tessa and I are just hanging out. Life today is great. We are happy to just be together doing ordinary things we have rediscovered as extraordinary...namely just hanging out together.

Well, hope you find some hanging out time and share a warm hug with your loved ones today.

Take Care,
Dave

Friday, January 26, 2007 12:21 AM CST

Hello All,

Sorry about the delay in updating, but with Donovan's passing, we have been making sure to spend extra time with the kids.

Noelle's blood tests have shown no blasts for 7 days now, which is incredible news. We are so proud of her. That means that 42 of the last 45 days have shown no blasts. Yahoo! But...yes, there is usually a but for most good news. Noelle's platelet problem is not resolving. I woke up this morning to find blood on my arm and hand as well as on the pillow and sheet. Noelle's nose and lip were bleeding and not stopping. She had to go in this morning and get platelets as she just had 8,000. Normal is somewhere around 150,000.

So, we have traded blasts for low platelets. Most parents of kids with cancer would agree with me that the platelet problem is the lesser of two evils. So for now, we will be content in the fact that blasts are gone and we will put all our energy into trying to resolve the pesky platelet problem.

On the very positive side, Noelle's attitude has been great and she is so happy lately. At clinic, she charms the nurses and makes the time go very quickly!

God Bless,
Dave

Tuesday, January 23, 2007 10:20 PM CST

Compassion
�noun 1. a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.

Our field is overgrown with flowering anxieties and I can't seem to harvest them. No miracle spray, no earthly tonic can pull the vines from our hearts.

We were at clinic for many hours today, getting red blood and IVIG. The clinic was overburdened with grieving and exhausted families. Patients were in chairs, in rooms, in the hallways, and propped in every corner. Misfortune was and has been wildly growing.

I don't know what to do to relieve their suffering. I feel so much sorrow when I look at the faces of those who report for battle each day. They are weary, as are we. I don't know what to do.

We have watched too many little soldiers enter heaven's gates, as Donovan did this week. Although we know they go to a better place, we are left to linger in the grieving battlefield.

Today, I said to Michelle, our incredible Nurse Practitioner, that we all need more successes. We need the children and families, ours included, to see children who make it despite the odds. One success can dissipate many griefs. We are so burdened to continue to see the tears and pain of the sick children and we need to see more and more success to make it through this. I asked her where are the miracles, where are the kids that beat the odds. We need to see more success stories. Where is a miracle child? Michelle, tossing her eyes to Noelle, simply said "you may be looking at her."

Compassion. Simple words from a friend. She probably has no idea what those words meant, but my suffering felt a little less real during that moment.

Noelle's success transcends our family. Yes, for us, we need her to succeed. More so, the world needs to see miracles to keep the faith. Our family would like nothing more than to be able to share the power of God and the success of our daughter with those who need to hear it. We need to share it with those who are sitting at the edge of a hope and a prayer, the same cliff we have been perched on for almost 2 and a half years. Because knowing there is a chance for success is the real start of the battle. Believing that you can be that miracle, you can be part of sharing your miracle with others, that is what the world needs.

Thank you Michelle for reminding me that this battle is truly winnable and giving us a subtle, yet powerful show of compassion when we needed it most.

Please fill your sails with compassion and send forth a gust of faith and hope in this week and those ahead.

Many of God's blessings,
Dave

Monday, January 22, 2007 4:17 PM CST

Hey all,

Just a quick message today. Grammie and Poppy are now back for a few weeks and Nana will come in a couple of weeks.

Noelle has zero blasts again today. Yeah!

Please keep praying for Donovan's family, as they had to say goodbye to him this weekend and pray he makes his transition into Jesus' waiting arms. Also, please pray for Bryce, as his family struggles to deal with his very fragile condition. God Bless both of these families and all families who suffer with illness.

Finally, WOW Bose School! That is a lot of Nickels!!! How great you all are for your efforts and the care you show for our daughter. You are learning more than school, you are learning about life!!! Thank you Ms. Jansen and all the staff at Bose. Also, thank you to Ms. Moehring and the Zion class for also putting together Nickels for Noelle. That was quite a powerpoint presentation you put together!!! Hope the PTA thought so too!

God Bless,
Dave

Sunday, January 21, 2007 2:42 PM CST

Please direct all your prayers to Donovan and all his family. They said good-bye to him last night after a long two years of treatment. He was an inspiration to so many and fought harder than anyone I have ever met. We will miss seeing his little face at clinic and at the apartment.

Tonya

Friday, January 19, 2007 1:24 PM CST

S'up Peeps?

Just a quick note to let you know that Noelle's blast count is back down to ZERO! Yeah! Thought that might spread some sunshine to Noelle's fans.

Please, Please, Please pray for Baby Donovan's family so that they might have more time with him. I can only imagine the pain they are in...

Also, to my friend and co-worker from Hillcrest whose mother-in-law is in surgery today for cancer, please say a very special prayer.

God's Blessings,
Dave

Wednesday, January 17, 2007 3:50 AM CST

Late last night, our nurse practitioner called to tell us that Noelle has 4 percent blasts in her blood again. My fear of suppressing her immune system too much seems to have come true. Dr. K called at about 10:30 last night too. She reassured us that this was just one lab draw and a doctor has not looked at the blood. However, we are scared and saddened once again.

Yesterday, we were full of hope because Noelle's platelets seemed to have rebounded a tiny bit. They were 20 on Sunday and then Tuesday they were 32 without a transfusion. She was unable to get IVIG again because of high protein levels. Please pray that these platelets rebound faster now so we can get off steroids and allow her body to do what it needs to.

Tonya

Please continue to pray for Donovan. The doctor feels he will not make it through the weekend. His family is in need of tons of support. www2.caringbridge.org/in/babydonovan.

Monday, January 15, 2007 7:50 AM CST

Thank you to all of you who have offered cell phone advice and offered up their old cell phones. Robin, you are a life-saver. Thank you so much for sending me one you aren't using. Having a cell phone down here is so important and you have saved me so much money.

Noelle had a good weekend. She has squeaked through Sat and Sun without a transfusion. Yesterday her platelets were 20 so I guess we will have to see about today. I am not scheduled to draw/drop blood until tomorrow. We will just be watching her for bleeding/bruising/etc. Tomorrow, she is scheduled to get IVIG which helps with the antigens/antibodies that have built up in her body that kill her platelets. Let's hope this helps. I am a nervous wreck on these steroids.

We had a wonderful day with Nurse Mary and Craig yesterday. The weather was 75 so we enjoyed some time at the park and a delicious meal. We had a great weekend with Uncle Chris. His plane finally made it Saturday after being cancelled on Friday but he was able to stay an extra day. The girls had so much fun with him. We were also able to have Donovan's brother, Dylan, over to play on Saturday. Tessa enjoyed the time with another child.

We are just so thankful to have another uneventful (medically) weekend together as a family. Each day we spend is just another memory we have made.

Tonya

Please continue to pray for Donovan and Bryce and all the kids out there who need a miracle.

Friday, January 12, 2007 5:32 PM CST

Quick message----I dropped my cell phone and of course the flip part broke off the base. So-----if anyone is trying to reach me, please call Dave's cell phone or the apartment number. We have gone to three stores looking for a used replacement but none had any. Our only option is to buy a new one for over one hundred twenty-five dollars. Yikes!!! What's a girl to do? I guess I just have other things on my mind than watching out for my phone..... T

Noelle's platelets have dropped again yesterday and today. She has bruises everywhere because she has become so active. It is great to see her walking and getting up off the floor but Dave and I constantly worry about her hurting herself. Yesterday she went potty on the potty chair, stood up, tripped and fell on it. Now she has a huge bruise on the back of her leg. It looks so painful....

Today we were at Target picking out panties and I was going through the selection with her. Then I asked her which she wanted and she replied "I don't know, this is stressing me out". I ended up picking them out for her.

Tessa has had a great week. She has enjoyed her new classes at Gymboree tremendously. She also spent the last two days at clinic with her friend, Kathy, a little girl who will have a transplant in about a month in Philadelphia. They spent hours playing Candyland, watching videos, coloring and eating snacks. They were so cute together. Today they hugged and said good-bye to each other...a short but meaningful friendship.

Have a nice weekend....Uncle Chris will be here visiting for a few days and we will have dinner at Nurse Mary's house.....Yeah......

Tonya

Friday, January 12, 2007 9:55 AM CST

Thank you to everyone who wanted to be a part of the bone marrow drive today. I was able to find someone to fill the spot of the person who couldn't come.
Thanks again,
Auntie Erin

Thursday, January 11, 2007 11:06 AM CST

Hi this is Auntie Erin with a request. Tomorrow, January 12, from 9:30-1:00 my high school where I work, Central, is having a bonemarrow drive in Noelle's name. It looks like there is a chance that two people who were going to come will not be able to make it. Is there anyone out there that would like to be put on the registry????? Unfortunately I can only take two people. All you would have to do is come to Central during this time, fill out a medical form, and get your cheek swabbed, there is not even a needle prick. Also you wouldn't have to pay anything, that is covered. The only thing is you need to be younger than 60. So if anyone is interested please call me or email me ASAP, I will take the first two I hear from and let the person in charge know. My phone number is 262-515-0545 and my email is pawloerin@yahoo.com You will probably get my voicemail on my phone, but I will check my messages, leave your phone number and I will get back to you as soon as I can with any other details you need.
Thanks so much, hopefully we can get some volunteers.

Tuesday, January 9, 2007 3:10 PM CST

Greetings from North Carolina,

Well, I haven't written for a little while, so I thought I would put in my two cents again. First and foremost, I thought I would share that I am indeed in North Carolina still and will be for the duration. I have resisted talking about the situation, as I am not exactly thrilled with the circumstances of how I am down here. I had requested family medical leave and was told I would get the leave for another 12 weeks this year. Last year, I only took about 6 or 7 weeks of my FMLA leave, thinking I needed to work extra time to qualify for leave. Well, my last day of work before leave, I was told that I did not work enough hours in 2006 to qualify for FMLA. This situation happened 2 hours before the end of the work day and I was shocked. I had been told for weeks that I would indeed qualify for leave. However, they told me there was a miscalculation in the hours I had worked in 2006 and I no longer qualified for leave. Wow! What a bomb shell.

After several phone calls back and forth with HR, I finally talked with the head of HR (a woman I have a tremendous amount of respect for). Between her and I and another one of the supervisors of HR we talked about my options. It seems that Wisconsin has a 2 week FMLA emergency leave. I was told I could have that and then I would have to come back. If I wanted more leave after that, I would then have to petition the superintendant every time that I needed to leave. I was devastated (as my staff at Hillcrest can attest...thanks for listening to my stress...team!). I went from thinking I could have 12 weeks with my family to 2 weeks.

We know families where a parent had to work and something happened to their child (most often death of their child) and that parent missed out on the last weeks and months of their child's life. I am not willing to take that chance (though I do believe Noelle will live a long life!!!). So, I was unwilling to take the 2 weeks off and come back to petition for more time. Well, I was given a separate option, which I reluctantly accepted. I was told that KUSD has a policy wherein a family member can take off for a leave of absence for things such as "emotional difficulties" and the sort. It really was my only viable option. However, if I took this leave, I needed to know that it was until the end of the school year. I can not go back and forth from leave with this option.

I thought on this issue for a short while and decided that Noelle was more important than work and that I would never forgive myself if I wasn't there for her when she needed me. So, long story short, I am on "mental health" leave until August 31st from work.

I do have to continue to give thanks and praise to KUSD for continuing to help me. They have been great! Yes, I don't like the way I need to be off to be with my family, but I am grateful that they found a way for me to take leave. I also get to keep my insurance (as long as I pay the employee contribution monthly) and will have my job when I come back. So, THANK YOU THANK YOU...KUSD!

The flip side of decisions like this is that the majority of my leave is unpaid. I was able to use some sick leave bank for my leave so far, but that will run out. Well, there goes the frivilouos spending sprees and name brand clothes, haha. It will be a stretch, but who cares. Money is just paper with arbitrary value. God, health, family and friends are the real worth. With those criteria, I AM RICH IN LIFE.

I just wanted to again thank all those out there who have continued to help us while we find our way through the cancer jungle. Your continued support has sustained our emotional, physical and financial voids. God has been great and his love has been felt through all your help!!!

On to Noelle. Well, the tactics to help Noelle's platelets are starting to pay off. She is holding them for several days now and not needing as many transfusions. Her blood tests have continued to show no blasts and her white count looks normal. Also, her hemoglobin has held much better. We are ecstatic with her progress. Also, she has been in such a great mood. Yesterday, we went to a special movie at the planetarium and it was a blast. We couldn't have had a fun adventure like that a month ago (as she wasn't feeling well).

Counts today...WBC 10.9, Hemoglobin 8.7, Platelets 135, Segs 84, Lymphocytes 11, Monocytes 5. Blasts 0!!!

God Bless You All,

Dave

Sunday, January 7, 2007 10:28 AM CST

Hello,

We are on our own for a few weeks now. I just dropped my parents off at the airport. They are such a great help but deserve to have some time off. My mom has to get her monthly allergy shot...we don't need her going into shock from a bee sting again. We have enough drama in our lives.....

Noelle has been holding her own. We cut her steroids in half and her platelets have fallen but much more slowly. Saturday---22, Sunday---12. We don't need a transfusion unless they go below 10 but decided to get one today since we don't want to end up with bleeding in the night.

Overall, it was a nice weekend. It was in the 60s/70s and sunny.

Tonya

Thursday, January 4, 2007 12:55 AM CST

Life around these parts is never boring.

Noelle's platelets have declined since Sunday and are currently in the 30's. We are happy that the are declining more slowly but disappointed that they aren't holding better. I am a nervous wreck to be on this high dose steroid. I feel that we are gambling and as I have said before---playing Russian Roulette.

We met with Dr. Parikh, Dr. Kurtzberg and Michelle on Tuesday. We began a med that suppresses the B-cells in hopes of weaning Noelle off her steroid possibly tomorrow. She will continue to receive IVIG twice/week in hopes of helping the platelets. I know I have to be patients once again since Noelle's body is always a little slower to respond. Dr. K was very positive indicating how pleased she has been with Noelle's ability to fight off the cancer. I am trying not to get my hopes up to high but be positive with her.

We signed Tessa up for three classes at Gymboree. (Her behavior has been a little difficult lately. She is just too couped up and needs to play with other kids.) She loves all the classes and begged to go everyday. Luckily, they have open gym three days/week so we brought the girls today to play. We had the whole place to ourselves.....It was great for Noelle to have such a great workout. She is standing up easier lately and walking a little better. No running yet but she is trying. Tessa ran obstacle courses with Dave and I the whole time burning up all that excess energy...YEAH!!!!

Anyways, we have clinic tomorrow. It will be a long one with IVIG, possible platelet transfusion, possible red blood transfusion.......

Tonya

Tuesday, January 2, 2007 11:08 AM CST

ORDINARY (-adjective)
1. of no special quality or interest; commonplace; unexceptional; an ordinary person.
2. plain or undistinguished
3. somewhat inferior or below average; mediocre.

To all extents and purposes, ours was an "ordinary" New Year's celebration. We hung around the house. We made h'ors d'ouvres for dinner. We watched a movie or two. We pulled the string on our "poppers" that shot confetti up in the air. We talked. Tessa and Tonya went to bed at 10:00 pm. Noelle fell asleep on my chest at 10:15 and slept there for 5 hours, while I watched a documentary on Mt. Everest.

"Ordinary?" Well, I guess if you believe in the definition supplied by Webster's Dictionary. But, ordinary is a state of mind...and therefore, so is extraordinary.

Two years ago, we were told our daughter had a very unique form of Leukemia, one that involved her CNS, chloromas, and was usually reserved for males over 60 years old. "Ordinary?" I think not. We were then told she had a small chance to survive for an extended period of time...we were given these odds and those odds. Yet, here we are 28 months later with a daughter who has better counts than we have seen for months, happier than we have ever seen her, and with a vigor for life that would make any man or woman jealous. "Ordinary?" I think not!

So, as I laid there watching my 5th and final hour of the very facinating (yes it was facinating!) documentary of Mt. Everest, I couldn't help but marvel at our less than "ordinary" life. Yes, to many, our night may have seemed "ordinary." But to us, it was an "extraordinary" reminder of a tiny little girl with the Power to Move Mountains, the Power to Defy the Odds. It was "extraordinary" because we realized what it took to get here and reflected on just how lucky we are to all be here together.

Will 2007 provide us with a better year? Well, it already has started off "extraordinarily" well.

Happy New Year everyone and God Bless. May you re-evaluate your "ordinary" days and find the "extraordinary" in simple, yet unforgettable moments.

Dave

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