History

Friday, July 20, 2007 10:21 PM EST

Good evening folks:

I wanted to post what I wrote yesterday but did not have a chance. Yesterday marked five years since Nathan was diagnosed. Here's what I wrote:

Five years ago today.

Phew. I have to step back and take a deep breath.

Five years ago today, I got the phone call. The phone call that is every parent's worst nightmare. Sheer horror. My hand trembled uncontrollably as Nathan's pediatrician sobbed on the phone with me and stated that Chuck and myself needed to be driven to the clinic as soon as possible to discuss Nathan's lab results. Nathan had bruising and I had brought him to the doctor's office two hours before to have him accessed. I asked that she tell me right then and there because I knew it wasn't good. She hesitated and said, "Nathan has leukemia....."

Her voice trailed off. I dropped the phone in hysterics. "Cancer??? A baby?? My baby!?!? How could this have happened??"

So many questions.

The doctor stated that there was an oncology team down at Boston Children's Hospital waiting for us. She advised that we pack our bags for months. She apologized several times before hanging up. I was numb. Chuck was numb. Nathan was looking more sick by the minute. I shook and sobbed as we packed everything we owned. I brought Nathan down to his room one more time before we left, just in case it was the last time he was to see it. We put a lot of love and effort into his nursery and he loved his room. I lost all control as we walked out of the house to the car. "What if he never makes it home again?" This thought resonated in my mind from that moment until we were able to bring him home three months later.

We met with the team down in Boston in the emergency room. They gave us the gut wrenching news. He was given a 40 percent chance of surviving five years. He was one of approximately 60 babies diagnosed in the U.S. each year. He would have to undergo grueling chemotherapy and months of hospitalization. It was all too much to process and understand. We remained stoic and optimistic knowing that we had to fight for our beautiful baby boy who had no understanding of the torture he was to endure.

This day is monumental. This year, July 19, 2007 takes on a new dynamic. Five years ago, as we sat in a cold ER room numb, deflated...awaiting results and a game plan, we didn't know what the future was going to hold. We knew Nathan would be admitted for months to the oncology ward. The scariest place for parents and their child. The world of unknown. I shutter at the thought of ever going back to fight the fight again.

As the doctors explained the odds over the course of five years, I remember thinking, five years??!? That's such a long time. "What if we lose him? What am I going to do? My only son, my hero... What would I do without him? What would we do?"

I sit here today, with Hope and Faith. Hope that Nathan is going to be okay, and faith in God. God is good. He saw Nathan and all of us through the most dark, horrific times you could only imagine in your worst nightmares as a human being, but most importantly as a parent with the most perfect love for their child.

He has beaten the odds with an endless amount of zest for life. Nathan is strong, and we have faith and hope that he will continue to do as well as he has. We are so blessed and we do believe in miracles. Nathan is living proof that they happen. After Nathan's cancer returned, his odds were lowered to less than 10 percent. He overcame it with fortitude and pressed on because he knew we were doing everything in our power to get him through it. We had faith in him, and we always will.

Nathan: We love you buddy! You did it. Five years later. You're here, and an inspiration to so many.

Thank you to everyone who have pulled us through this. Most importantly, thank you from the bottom of our hearts for praying for Nathan, and never losing HOPE.

With Hope, Love and Faith,

Becky, Chuck, Nathan and Family

Tuesday, June 19, 2007 1:25pm

Good afternoon,

I am re-posting this to help get the word out. Please strongly consider attending the event listed below on Saturday, June 23rd. Our son Nathan would not have had a second chance at life or the ability to be cured of this horrific disease without the many generous people who so graciously register into the National Bone Marrow Registry every year. Most of you know our son's story well and know the impact of Nathan's bone marrow transplant in our lives. Nathan would not be here today if not for his transplant and new lease on life. He will be deemed cured of infantile leukemia in August of 2008. Please help in anyway possible on Saturday. Donation of blood and platelets is also extremely valuable. Nathan received countless transfusions over the course of two years while he underwent treatment.

Thank you for your time.

Sincerely,

Rebecca Wright

*****************************************************
This is Tammy Carlson, Nathan's mom.

We are having a Bone Marrow Drive called "Nathan's Wishes" on Saturday June 23, 2007 at St. James Methodist Church, 646 DW Highway, Merrimack, New Hampshire from 11-4pm.

There will be a Red Cross Information Booth on donating blood with upcoming blood drive information and a booth for the New England Organ Donor Program to educate on organ donation. It was Nathan's wish to help people understand and be educated on organ and blood donation, as well as getting people on the registry. Nathan begged us to donate his organs and didn't understand why he couldn't, so we donated them to research to benefit the experimental transplant he had to help other children.

I am sending this to those of you who have carepages and know people in the New Hampshire Area who may help spread the word. We would appreciate it if you would consider posting this information on your carepage and/or sending this around in e-mails. I also have a flier I could e-mail to you as well if you are interested.

This isn't about us, or Nathan, in the end it is about all of the families looking for hope, please consider helping us.

Tammy Carlson
carlsoneandt@comcast.net

For information, call Lindsey at 424-1965.

The drive is in memory of Nathan Carlson, a 7-year-old Merrimack boy who died last year after fighting leukemia, and who wanted as many people as possible to join the national bone marrow registry.

P.S. Nathan is doing great! He is enjoying the summer and we are all doing well. He finished up school last week. He will begin a speech therapy based summer program on July 9th at Easter Seals. He is also going to a place in Londonderry called Kidz Play. Their website is www.kidzplay.org if you want to check it out. Starting this Tuesday, June 26th, Nathan will be going to this facility to receive speech and occupational therapy once a week. It is 45 minutes a session every Tuesday. We think this will be great for sensory integration as well. We hope this will be a good boost for Nathan and the special needs that he has.

Julia and Madelyn are doing well and getting big. They want to go outside and play but I promise to post new pictures tonight when they are sleeping.

Thank you for checking in on us.

Be well and God Bless,

Becky & Family

Wednesday, March 28, 2007 1:01 AM EST

Hello faithful followers,

I hope this note finds everyone well. We are doing well. All five of us tested positive for influenza last week but we are feeling much better this week. Thank goodness!

Nathan is doing great! He is loving the warm weather. School is going great for him and he is just his happy little self. He is such an inspiration to me and to Chuck. He has a zest for life that I cannot put into words. I posted a video above of he and his three year old sister Julia dancing to one of their favorite songs. Enjoy!

Healthwise, everything is status quo for Nate. He will be seeing his cardiologist, Dr. David Brown, on April 30th down in Boston. We were scheduled for a visit including a routine echo last week but it had to be rescheduled due to the flu. I am anxious to see how his little ticker is doing. We don't expect any problems as this is just his routine visit but the worry is forever present in the back of my mind. One day he will need surgery, we just don't know when.

In other news, this July will make five years since Nathan was diagnosed with leukemia. July 19th to be exact. I can't believe it's been almost 5 years. We are so eternally grateful he is still here and thriving. He still has quite a few issues concerning his health but they are things we can work through. When we were presented with the terrifying side effects of the Total Body Irradiation he received, I remember distinctly telling the doctors we will do whatever we have to do to help him through it. We knew it was going to take a tremendous toll on his little body but it was the only realistic option in our quest for a cure for Nathan. It did take quite a toll but Nathan is here, and beating many odds. God is good and we are so lucky. He is a miracle and we just feel so blessed.

As the warm weather approaches, I start to feel a little sad I must admit. Nathan was diagnosed in the summer of 2002 at five months of age. That following summer, he relapsed and had his bone marrow transplant in August 2003. We spent those two summers in the hospital down in Boston. I don't know why it tugs at me so much. Vivid flashbacks of our son's life hanging in the valance at those horrific times haunt me at this time of year more than usual. It's a horrible feeling I carry in the pit of my stomach all the time but it seems to be surmounted at this time of year. Hopefully the fear and pain of watching him go through it all will subside with time. The fear of relapse weighs on me too. I don't want to sound negative but it is the reality we face on a daily basis. Those who have lived a day in the cancer world, know what I mean. That insidious beast can rear it's ugly head at any time. We have Hope and we Believe that it won't. Sometimes it's just tough to keep stored in the back of our minds.

On a happier note, little Miss Madelyn turned one this past Saturday. We had a party on Sunday and it was a lot of fun. Madelyn is the youngest of our brood and she is getting so big. It's hard to believe a year has flown by!

Julia is taking ballet class and loving it! She is too cute. Her dance recital is in June. She is only three but I swear she is going on sixteen. LOL She is doing great and is looking forward to some summer camp this Summer as well as preschool in the Fall.

I'm sorry for the long winded update. You know me when I get on my soapbox. Thanks for letting me vent. :)

Happy Spring to everybody and I will update again soon. Be well and God Bless you all.

All of our love,

Becky, Chuck, Nathan, Julia and Madelyn
xoxo

Tuesday, January 30, 2007 11:04 PM EST

HAPPY 5TH BIRTHDAY NATHAN!!!!!!!!! WE LOVE YOU SO MUCH LITTLE MAN!!!

We had a great day today. Nathan and I baked cupcakes for his birthday to bring to his preschool class. He was so excited to go to school.

I can't believe our little angel is five!! It's amazing. He is our oldest child and I will never forget the day he was born. He made is grand entrance at 5:33pm weighing in at 7lbs, 14oz and was 20" in length. My water broke ten days early so he took us by surprise. He had tons of brown hair and he was just adorable. Chuck and I were so excited and relieved he was here safe and sound. Little did we know what our future held at that point in regards to his health. As I type this update, I am praising God for watching over our precious Nathan. Here we are five years later, after overcoming huge obstacles in his short life and edging closer to the five year cure mark.... It's remarkable and so is Nathan. He is a fighter and has a zest for life that is beyond words. He set out to beat his cancer and overcome it. Please pray that he stays healthy and beats this cancer monster once and for all....His strength is an inspiration to so many.

Thank you all for checking in on Nathan. Please feel free to sign the guestbook. I love reading the entries to Nate.

Thank you and God Bless.

Love,
Becky and Chuck

P.S. New photos in the gallery!

Nathan just five years ago:

Tuesday, January 16, 2007 7:18 PM CST

Good evening,

I hope this update finds everyone doing well. Nathan is doing great and continues to do well in preschool. He is making great strides and making us so proud.

Last week was kind of a tough one for our little guy. He had a cold that turned into bronchitis and a severe infection in his left ear. He had a fever of 102-103. He was so miserable. It seems like when he gets sick, he gets REALLY sick. He's continuing to fight it off but doing much better. He still continues to run around the house and cause a ruckus even when he feels lousy. :)

Nathan continues to be stable healthwise. He is receiving phlebotomy treatments every eight weeks down in Boston for the hemochromatosis. We also met with an endocrinologist locally last month and we were very impressed with her. She was very patient with Nathan and really answered all of my questions. He will see Dr. Harrington every six months. He will also have a repeat DEXA scan (bone density scan) in the next couple of months. I have to call down to Boston to arrange it. If anything, we pray for improvement with this scan. As many of you may remember, Nathan had a scan in January of 2006 and it showed he had very low bone density. He fractured his femur twice in 2005 and that was when it was determined that he most likely had a serious problem. I hope and pray that this resolves with time. I worry so much about him. I worry for when he is not by my side and away at school. We've had meetings with his teachers at school about it and they are vigilant but accidents happen and I just get worried sick over it. Please pray for an improvement with his upcoming scan.

Julia and Madelyn are also doing great. Julia turned 3 on December 3rd and had a blast at her Disney Princess party. She's getting so big. It just amazes me. She will start preschool in the Fall but she wants to start now. I am looking into something a few times a week for her. I just applied to a local preschool for her so we'll see.

Madelyn will be 10 months old on the 24th of this month. I just can't believe it. She is so adorable and getting so big. She is trying to walk but we're struggling enough with damage control with her just crawling LOL. I can't imagine what it will be like when she is running. She gets into anything and everything. Her favorite objects at the moment are the remote control and telephone. She is always surrounded by toys and books but chooses the things she shouldn't be playing with. haha Go figure....

In closing I ask that you storm the gates of Heaven for a precious little boy I have been following since the summer. He is terminally ill with the same kind of leukemia Nathan had. His days are numbered and my heart is broken for his family. His name is Donovan and his website is www.caringbridge.org/in/babydonovan

Please pray for all of the children that continue to fight the beast that cancer is. Please pray for these families in turmoil. Please pray for those who have lost loved ones to this horrific disease. It's heartbreaking and I pray that a cure be found as soon as possible.

Thank you all for checking in on us. Be well and God bless you all.

Lots of love,

Becky, Chuck, Nathan, Julia and Madelyn

P.S. This weekend is going to be big New England...GO PATS!!

Tuesday, January 16, 2007 7:18 PM CST

Thursday, November 23, 2006 4:09 AM CST

Hello everyone,

It's been over two months since my last post and I apologize for that. Everything is status quo. Nathan is doing really well. He loves school and can't wait to go. He goes Tuesday through Friday. They are wonderful to him. The little bus comes and picks him up and he gets so excited when they pull into the driveway. He likes to spread his wings a little bit and display his independence. Tears stream down my face sometimes as I walk back into the house and think about how much he's grown and blossomed. I think back to the days while we sat in the hospital with so much uncertainty wondering if he would ever make it to preschool. The prospect of Nathan never getting to experience life and all of it's facets chilled me to the bone. It still does but I am so eternally grateful he has done well. He's so full of love and holds such a special place in my heart. He's amazing and he gives me so much strength. If he catches me crying he says,"okay, okay Mommy. Don't cry Mommy!" A lot of the time it's tears of joy as I watch him unload his little backpack and show me the art projects he made and his book of the day. Some days I just can't hold back. He is such an adorable little guy.

We met with Dr. Elly Barry on November 3rd and she was thrilled to see how well he is doing. We see her every six months. She's been Nathan's primary oncologist since he was diagnosed. She was a fellow at the time and now she is an attending physician. We love her so much and love seeing her. Nathan adores her. He gave her a big hug at the end of the visit.

Nathan's lab work came back looking great. I still have extreme anxiety as we await the results. The fear of relapse is always present in my mind. He looks great and doesn't have symptoms but it always tugs at me. I still have moments now when I stop and think of the what ifs. Not out of negativity, but the reality of cancer and how it can rear it's ugly head again. Be it the same evil leukemia he had, or some other form of cancer. He had total body irradiation so I always worry about the potential secondary cancers that they warn about. I guess once you live through it, the fear NEVER goes away. It may lessen with time, but it never truly goes away.

Nathan will be going back down to Boston in a couple of weeks for a phlebotomy treatment. I'm hoping and praying that they don't have a hard time drawing blood. As many of you know, Nathan is a tough "stick" and they usually have to poke him a few times before finally getting it. This is torture for him and he fights them with everything he has. It's traumatic for both of us and I hate watching him suffer through it. Let's hope this impending visit is an easy one for Nate's sake.....

In exciting news, Julia will be three in less than 2 weeks!! Can you believe it? She was born a few months after Nathan's bone marrow transplant. She came at a harrowing time and has brought so much joy to our lives. Happy Birthday princess girl! We love you!!

Madelyn is 8 months old tomorrow and doing fabulous!! She is such a love. She has been crawling for about a month and learned how to pull to stand this past week. She babbles a lot and she can say mama, dada and bubba! She is a chubby, delicious baby.

Thank you to all of our faithful followers depite the lack of updates. As the old saying goes, no news is good news. Thank you for continuing to keep Nathan and our family in your thoughts and prayers. We ask that you keep all of the families dealing with cancer and it's devastating repercussions in your thoughts and prayers. Please pray for those who have lost loved ones as the holidays approach us. We hold them all close to our hearts and think of them daily.

Happy Thanksgiving and we hope this holiday season is good to all of you. I will post again soon. I will upload some new pictures too! Nathan was the Hulk for Halloween. Julia was a skunk and Madelyn was a duck! They were so cute! Enjoy the pictures.

All of our love,

Becky, Chuck, Nathan, Julia and Madelyn

Wednesday, September 20, 2006 10:54 AM EST

Hello everyone-

Everything has been going well. We went down to Boston on Sept. 5th. Nathan had a liver scan done. They scanned his liver to measure the amount of iron in it. It showed improvement from his last scan which was over a year ago. Nathan will be receiving phlebotomy treatments again starting this coming Tuesday down at Children's. Phlebotomy is when they take blood out of the body to help pull the iron from where the excess is being stored. Adults who have hemochromatosis like Nathan go and donate blood every couple of months. Nathan will receive phlebotomy every 8 weeks. They will monitor the ferritin level in his blood. His ferritin level allows the doctors to see if there is an increase in iron in his body. His ferritin level that was drawn locally two weeks ago was around 1060 which is stable for Nathan. It's high in comparison to normal values but stable. His liver enzymes are high but stable too. They too were much higher just one year ago. Nathan hasn't had therapeutic phlebotomy in over a year so his body has been doing well with regulating everything.

Madelyn will be six months old this coming Sunday, the 24th. I can't believe it. It's so surreal to think she is growing up so fast. She loves to run around in her walker and coo and giggle. She is such a love. She's so cute.

Julia is doing great too. She'll be 3 in December. I can't believe it. She's so smart and so articulate for her age. I call her my shining star. I know one day she will be famous. Check out the video below. She's not a bad little singer for being only 2 years of age. She dances too. She told me the other day that she wants to be a doctor. Harvard, here she comes......

Nathan, our little muffin, is doing great at school. He goes to preschool four times a week. He receives speech and occupational therapy at school. His teacher is so impressed with his progress. His cognitive skills and speech have improved greatly. He absolutely loves it. He looks forward to school Tuesday through Friday. We miss him in the afternoon, but it's great for him to be out there in the big world. He has gained so much confidence.

In sad news, baby Curran passed away on August 22nd. He had what Nathan had. His website is www.caringbridge.org/visit/curranpace. We pray that his parents and family find comfort in Curran's amazing strength and courage and the legacy he left behind.

Please also keep Baby Donovan in your prayers. He too has infantile ALL and is now receiving his second transplant at Duke in hopes to beat this horrible disease once and for all. You can follow his story and send words of encouragement to www.caringbridge.org/in/babydonovan.

Please also pray for baby Donovan's good friend Blake. He is one tough cookie and we have been following him closely too. His site is www.caringbridge.org/visit/blakehaines. Keep up the good fight Blake!

Take care everyone and thanks so much for checking in. We really appreciate all of your support. We started this journey back on July 19, 2002 when Nathan was diagnosed with the unthinkable at the tender age of 5 months. You all have been such a great support system. Just thinking about Nathan and praying for him means the world to us. Thank you, and God bless.

All of our love,

Becky, Chuck, Nathan, Julia and Madelyn
XOXO

Below: Here is a video of Julia, Nathan's 2 year old sister, singing her rendition of "Twinkle, Twinkle Little Star". It's adorable so enjoy! :)

Get this video and more at MySpace.com

Tuesday, August 8, 2006 11:49 PM CDT

Good evening!

Please read the journal entry before this one to catch up on our crazy life.

Things are going very well. Today marked 3 years since Nathan's bone marrow transplant. Can you believe it? I know we can't. Happy Birthday Nathan! Two more years until we hit the highly anticipated 5 year cure mark. It is surreal and we feel extremely blessed. Nathan is such an amazing little kid. He is so happy and loves life. He has taught me more in his 4 years on Earth than I will ever learn in this lifetime. Please pray for his continued good health and progress.

I would also like to ask for prayers for a sweet little baby in California that has the same form of leukemia that Nathan did. His name is Curran and his website is www.caringbridge.org/visit/curranpace. He is currently in relapse awaiting a bone marrow transplant. Please pray that this baby beat the odds. He is amazing and we are truly inspired by Todd and Becca's faith.

We continue to keep busy with summertime activities. The kids have had a lot of fun playing in the sprinkler and kiddie pool. Summer flies too quickly around here.

Well that's all for now. Keep praying for all of those in the good fight against cancer and for those we have lost to this horrific disease. Now go give your kids a hug!!

With all of our love,

Becky and the gang

Tuesday, August 8, 2006 11:46 PM CDT

I have been slacking sooooo badly with this site!! I apologize. As we know in the cancer world, no news is good news. I will post the updates I posted on the other site here:

August 2, 2006

I hope everyone is having a good summer! Sorry for the posts being so few and far between. We have been very busy.

As I'm sure many of you already know, Lucy Grogan passed away on July 21, 2006. We are reeling from this horrendous loss. Lucy was a sweet, kind, incredibly strong, compassionate and brilliant person that will be sorely missed. She was just twelve years of age. She is at peace, as is her family. Lucy was diagnosed with Acute Myeloid Leukemia on July 23, 2002 just days after Nathan. Nate was diagnosed on July 19, 2002. We instantly bonded with she and her family and they have a special place in our hearts. Lucy used to hold Nathan and feed him his baby food. Her mom Beecher and I grew close instantly and spent months in Boston together. Lucy endured more than words can describe in the last four years and she did it with the utmost dignity and grace. She was never one to complain. We ask that you pray for Beecher, Rick and their families during this very difficult time.

I posted some new/old pictures in the gallery. I came across the older pictures and just can't get over how much Nathan has changed. He's growing up so fast as are our little girls. August 8th will mark the 3 year post transplant mark. Please pray for Nathan's continued progress as we near the 5 year cure mark......

On the health front, Nathan is doing quite well. We were supposed to go down to Boston a couple of weeks ago. The morning we were preparing to go, I got a phone call to turn on the news because part of the tunnel had collapsed. We were unable to go due to traffic overflow so it has been rescheduled for September 5th. They will be checking the iron level in Nathan's liver. We are hoping it's not too overloaded. Please keep him in your prayers.

Nathan is going to see a dentist and the eye doctor locally this week. Just your average annual exams so hopefully he doesn't freak out too much with this. He's not a big fan of getting his eyes or teeth checked so we'll have to see how it goes.

Nathan is in preschool still and will be starting kindergarten next year. He starts an afternoon preschool come the Fall. I think he will like it. I can't believe he is 4 1/2 already! Nathan is still receiving speech and occupational therapy. I have also spoken to Easter Seals to get he and myself more involved so that more of his needs are met. He is still having a tough time with his speech but the progress is certainly there. We are very proud of him. He can count and he is learning to write numbers and letters on paper. He knows the alphabet too. I can write it on paper for him and he says each letter as I go. He gets so excited when he sees us clapping and praising him. It means the world to that little guy.

Julia is 2 1/2 and is doing great. She teaches Nathan all kinds of things. She's a little smarty pants so she is a good influence on Nathan. She is always quizzing him. If she sees a letter or number, she'll say, "what's that Nathan?" And when he responds, she says "great job buddy." It is adorable. She is quite bossy though. She is obsessed with anything involving princesses right now. She'll say "I want princess milk and princess cookies please." Everything is princess this, princess that. She is a character. If you've met her, you know what I'm talking about.

Madelyn is 4 months old already! She is just a love. She is so sweet and a very easy baby. She is fabulous. She has lived up to being the icing on the cake for us.

Well that is all for now folks. Enjoy the rest of the summer and we'll be in touch. I'll update the gallery with the Jimmy Fund Clinic Festival pics I have once I upload them from the camera.

Be well and go hug your kids!

Lots of love,
Becky, Chuck, Nathan, Julia and Madelyn

*************************

May 10, 2006 at 02:50 PM EDT
Hey everyone-

I am so sorry for being so lax with updating this site. I've had all intentions in doing so but have been really busy with the three little cherubs.

Madelyn Paige Wright was born on March 24, 2006. She was born at 7:53pm. She made her grand entrance on my actual due date. She weighed in at 9lbs 11oz and was 22" in length. It was a quick and relatively easy delivery. Her shoulders were stuck but they were able to get her out. She is one big baby!

The kids love her and she is just the icing on the cake. We are thrilled she is here and she's very healthy.

Nathan is doing well healthwise. We saw Elly, his primary oncologist this past Friday. She was happy to see him doing well. He will be having a liver scan within the next couple of months to measure the level of iron there.

I have to run. Sorry for the brief update. I posted a ton of pictures in the gallery. Enjoy!

Have a good rest of the week and I'll post an update in more detail again soon.

Love to all,

Becky, Chuck, Nathan, Julia and Madelyn

Thursday, February 9, 2006 3:33 PM EST

Hello Friends and Family,

We hope this update finds everyone well. We are doing well. The kids are keeping us super busy and they are both doing great. Nathan celebrated his fourth birthday on January 30th. We had a lot of fun at his party.

Nathan had an echocardiogram done last week and his heart looks status quo. Dr. Brown, his cardiologist in Boston, feels Nathan should be fine without surgery until his early teen years. He may need to have his aorta repaired prior to that if he develops hypertension. He'll have an echocardiogram annually as long as it is not warranted more frequently.

We met with a neurologist in Boston last month to evaluate Nathan's developmental delay and some of the autistic traits he portrays. He was officially diagnosed with autism that day. Dr. Follett, pediatric neurologist, called me a few days after our visit to discuss findings on a syndrome that correlates with Nathan's symptoms. The syndrome is called Smith Lemli Opitz syndrome. It characterizes Nathan's slow growth, developmental delay and autistic traits almost perfectly. Here is a helpful website to check out: http://www.geneclinics.org/profiles/slo/details.html Nathan has some but not all of the symptoms. A lot of children with this disorder look as though they have a syndrome. Nathan doesn't "look" like he has the syndrome but not all kids do. Most children have a very different presentation at diagnosis than others. Some children are even diagnosed in utero with this.

After Dr. Follett and I discussed this syndrome, she ordered lab work to be drawn while he was sedated for his echocardiogram. There was a mix up and the only thing they drew was his cholesterol level which came back at the low end of normal. They were supposed to check a particular enzyme to see if that was high in conjuntion with his cholesterol. Since we have half of the results, it can only be deemed inconclusive. He will be redrawn on February 15th when he goes down to Boston for his DXA scan aka. bone density test. I will let you know the results as soon as the doctor calls me. It will take about a day to receive the results.

Nathan continues to do well at school. I met with his teacher and occupational therapist this past Monday to show her my research on Smith Lemli Opitz and to give her a letter from the neurologist stating her findings on the Austism diagnosis. We both agreed we aren't entirely sold on the autism diagnosis until Smith Lemli Opitz syndrome is ruled out. Upon doing research, I found that many children with this syndrome are misdiagnosed with Austism due to the obvious traits of autism presented by the child. It just happens to be a classic sign of this syndrome but is deceiving when a child has very few of the other symptoms related to the syndrome. It's amazing what your body does when it is simply lacking an enzyme. That is essentially what this syndrome is. There is no treatment at this time. I asked the doctor if there was a synthetic form of the cholesterol he could be missing and she said no. Managing the symptoms is all that is really done at this time. So we'll just have to wait and see....

I have to run but I just wanted to keep everyone informed of what has been going on. Also, we are due to have the baby in 6 weeks or less. Time is just flying by! We'll keep you posted on Madelyn's arrival.

Love to all and have a good weekend! Thanks for checking in.

Lots of love,

Becky, Chuck, Nathan and Julia

Wednesday, January 4, 2006 11:58 AM EST

Happy New Year everyone! We hope everyone enjoyed the holidays. We had a nice Christmas. It was very difficult due to my father in law not being there. As I had mentioned previously, he passed away very suddenly in September and we are still reeling from it to this day. It was very sad and hard to get through but the kid's excitement and pure innocence helped pull us all through it. Chuck's dad LOVED the holidays. He was a big kid and always made it such a joyful time. The void that has been left behind is immeasurable. Chuck has been holding up okay. Some days are better than others. The monumental "firsts" seem to be the roughest, such as holidays and birthdays. We pray that time will help us all heal.

Health wise, Nathan has been doing very well. He is continuing to be a slow grower. He weighs a dainty 25 lbs. He is growing in length which is good news. We met with Dr. Holm in Boston on December 23rd. She is a pediatric endocrinologist. She explained that there isn't a whole lot to be done at this point. They want to avoid daily hormone injections for as long possible. Her main concern was his bone density. As you all know, Nathan fractured his femur twice last year in less than six months. She isn't quite sure where the bone denisty issues are stemming from. I asked if it was from the chemo/total body irradiation. She said no. The only logical information she had was that it was from laying in a hospital bed for long periods at a time. The calcium can't distribute properly making the bones less dense. She said exercise and increased activity will help with this. I told her Nathan is an extremely active little boy and I still just didn't understand it. She scheduled a dexascan to take place in the next couple of months. A dexascan will measure the density in his bones. This should be helpful in seeing where he stands with everything. His bones feel so thin even to the touch. He feels so fragile to me. I really hope we can get to the bottom of this. I am terrified of him breaking another bone. He doesn't need to endure any more pain or suffering. Please pray we find resolution in the near future to this ongoing issue.

Nathan is doing incredibly well at preschool. His teachers, OT and speech therapist send progress notes home frequently and feel he is doing great. He is such a lovebug. He just loves to hug and kiss everyone. He shares well at school and is communicating so well now. He is speaking much more. Julia is advanced in her speech for her age and she teaches Nathan new words all the time. She can count to seven on her own and she encourages him to do it with her. She's such a big help. She speaks for him a lot and tries to tell me what he wants. We are trying to teach her that Nate needs to do it. She's so adorable.

On another note, I am already 29 weeks pregnant!! I can't believe how this pregnancy is flying by. I'm in my third trimester almost in the home stretch. I feel really good. I do tire much easier now. The baby is growing quickly and she's starting to take up residence in my entire abdomen which is making it hard to breathe/move etc. It's all worth it though. We want to name her Madelyn but are still on the fence with the middle name. I'll keep you posted! : )

Julia celebrated her second birthday on December 3rd. It was a lot of fun. She really enjoyed herself. It feels like just yesterday she was a little newborn. They grow up too quickly. Nathan will be 4 on January 30th. Can you believe it? We can't. Our babies are growing up too fast!!

Nathan is meeting with a neurologist on January 10th in Boston to evaluate his neurological state. There is no cause for concern. I just want them to follow it closely given all that he has been through. Sometimes I wonder if his developmental issues may be linked to something neurological. We'll see. I'll let you know how it goes.

Well that's all for now. Sorry for the long winded update. Here's to a happy and healthy new year!

All of our love,

Becky, Chuck, Nathan and Julia XOXO

Wednesday, October 26, 2005 10:48 PM EST

Good evening everyone! I'm posting an update to let everyone know that we not only found out that our new baby has a healthy heart, but it's a GIRL!!!! We had a fetal echocardiogram done on Monday and her heart looks perfectly healthy. PHEW!! What a sigh of relief. We were pretty convinced it was a boy but were pleasantly surprised to learn we have a healthy little girl on board. The name is still undecided but we have chosen a few that we like. Chuck and I can't seem to agree on one. : ) We have plenty of time to figure that detail out.

The kids are doing great and keeping us busy. They want to play outside but this chilly New England weather has kept us cooped up in the house. We've had so much rain lately. They are forever standing at the door chanting simultaneously, "OUTSIDE MAMA, OUTSIDE!!" We're trying to keep them busy with other things. Julia is learning to potty train at a consistent rate now so that has been a lot of work. She tried it out a few months ago for a little while and got bored. She gave it up but now she's going consistently during the day. She grabs my hand and yells, "Mama, potty!" She is very independent and refuses to wear a diaper during the day. She wears her big girl Dora underwear. I wish her brother would follow her lead. He still has no interest at all. We've tried but he cries and gets agitated. I'm sure she'll help him along. Julia will be two in December so my goal is to have her totally trained during the day by her birthday. Stay tuned...

Nathan will be going to Boston next Friday, November 4th. He will have a routine check up with his primary oncologist, Elly. We are going to be discussing Nathan's liver issues, neurological issues, developmental issues, cardiac issues, and bone density/growth issues. Lots of ground to cover but they are high on the priority list. We are going to work on getting several appointments made to see how we can help Nathan. One step at a time. I will keep folks posted as to how the visit goes and what the master plan will be. We are hoping to address everything in a steadfast manner to get Nathan closer to where he needs to be. He is extremely underweight and small for his age weighing only 25 pounds. He is also abnormally behind developmentally in relation to his peers. It breaks our hearts to see him with his little buddies at school trying so hard to keep up but he has so much difficulty in doing so. He has a severe speech delay with poor receptive language skills. His speech therapist and occupational therapist are working hard at developing his skills. His OT has been fine tuning his gross and fine motor skills. He has a limp from fracturing his femur twice this year but is steadily improving with therapy. I wish I could fix everything with a blink of an eye but I can't. I'm trying to keep everything in perspective and work on each issue to the fullest extent. We worry about him so much day and night. Thank you for listening and please pray that Nathan receives the care he needs. I'll update his site when everything falls into place.

Thanks for checking in on us and have a Happy Halloween. I'll be sure to post pictures of the kids in their costumes!

All of our love,

Becky, Chuck, Nathan, and Julia XOXO

Monday, September 5, 2005 2:47 AM CDT

Hello everyone! I hope this update finds everyone well and enjoying the holiday weekend. It's in the wee hours of the morning right now but I am working the night shift for some extra holiday pay. It's been thankfully on the slower side in the ER tonight so I am able to post an update.

Nathan got his cast off on Friday, August 26th. He is doing awesome. He is already walking again. He loves having his freedom back. The poor baby. He has been through the ringer. We hope that the road ahead contains smooth sailing. He is such a ray of sunshine. He loves life so much. His eyes say it all.

We will be seeing Dr. Ingrid Holmes, the bone density doctor, very soon we hope. We were supposed to see her last month but we were waiting for his cast to come off so that she can really examine him. She is booking out until next February but she is trying to squeeze us in sooner rather than later. I'll keep you posted.

This coming week will be busy for us. Nathan starts preschool on the 9th and he has a bone density test scheduled at Children's on the 8th. I'll let you know how everything goes.

Lastly, our family will be expanding as of March 2006. I found out that I am pregnant with baby number 3. It took us by total surprise but nonetheless, it's a blessing and we are excited. I am due March 24, 2006. We will be finding out the sex of the baby on October 28th. Stay tuned..... :-)

Thanks for checking in. Have a great holiday weekend!!

Love,

Becky, Chuck, Nathan and Julia

Wednesday, August 17, 2005 2:34 AM EDT

Hey folks,

It's super early in the morning but I woke up and can't really fall back to sleep so I figured I'd update Nate's site. Sorry for the delay.

Nathan went down to Boston last week and did really well. His blood counts came back more than perfect. As I had said in my last post, if Nathan's counts were on the decline, we would be in big trouble. His platelets were 269,000 and his other counts checked out just fine. His counts hadn't looked this good in awhile. Amen for that.

The doctors also took an XRAY of his healing femur. They were very impressed and said Nathan was a great healer. They were more than satisfied with his progress. He will be getting his cast off in 9 days. We can't wait!!! It will be so nice to have him free again. We've had a great summer despite it. We make the best of every situation with Nathan. He has such an amazing spirit. He hardly ever complains and is just happy watching Blue's Clues and playing with his trucks. For those who haven't met him, I wish you could. His attitute and lust for life is amazing.

Julia's doing very well. She's a 100addy's girl. She's talking up a storm and saying something new everyday. She's a bright little girl. She started peeing on the potty last month. She's good with potty training during the day but we haven't really started to train at night. She's young to even be potty training but she insists upon going on her own. She is so independent and such a little mother. She's forever bossing Nathan around and telling him, "that's enough." Girls are so different than boys.

Well that's all for now. I'll be sure to post when Nate gets his cast off. Please pray that he is walking soon after the cast is off. It took him a few weeks the last time because his legs were so weak.

Thank you all for checking in and God Bless.

Lots of love,

Becky, Chuck, Nathan, and Julia

Sunday, July 17, 2005 11:45pm EST

Hey everyone,

I hope all is well with everyone now that the nice warm weather is upon us. We're hanging in there....

Another stroke of bad luck came our way. We were at Children's Hospital on Tuesday, July 12th. Nathan got his routine phlebotomy done where they draw 60 cc's of blood to treat his hemochromatosis. (Hemochromatosis = too much iron in the body.) Go to the following site for more info: http://www.ygyh.org/hc/treated01.htm They did an MRI a few months ago of his liver due to prolonged elevated liver function tests. The doctors discovered Nathan's liver was enlarged and iron overloaded due to all of the blood transfusions he received on treatment. This condition is treatable but he has to go to Children's every three weeks to have blood withdrawn.

So, on with the story.....The nurses had a bubble machine going to distract Nathan from having his blood drawn. He doesn't have a port or a line in his chest so they go for the veins. He loves bubbles so this machine had worked out wonderfully. (Or so we thought.) When all was said and done with the blood draw, Nathan got off the bed and approached the bubble machine. When the unthinkable happened. He slipped and his left leg hyperextended and twisted out. He screamed in pain and could not get up off the floor. I felt sheer terror. He just spiral fractured his left femur in February so I knew from experience, what he had done. I knew he had refractured. I asked to have him seen and X-Rayed immediately. The doctor on the unit came and escorted us downstairs to the Emergency Dept. So if any good was to be seen at this particular moment, it was that we were close by to orthopedic surgeons and doctors that could help little Nate.

I carried Nathan from one end of Children's to another until we finally reached the ER. They brought us right back and the ER doc came in to check Nathan's leg. I held on to hope thinking maybe just maybe, it was a twisted ankle. I knew in my heart it wasn't but it was the only thing holding me back from a nervous breakdown. I kept thinking in my mind, hasn't he endured enough? Too much? My mind would not stop racing. I couldn't stomach seeing him in a body cast AKA spica cast again. We had six grueling weeks from February 21st to April 1st. It was miserable for Nathan to be in. I just couldn't begin to imagine it again.....

The doctor examined Nathan's left leg paying close attention to his femur. He did notice some deformity and swelling and sent us to Radiology for an Xray.

Nathan was very brave during his Xray and only winced when they straightened his leg out to get 4 films they needed. He is so tough.

We got back to the ER within a few moments and I braced myself for the what was to come. The ER doctor came right in and said it looked refractured to him but the orthopedic surgeon was en route to the ER to have a closer look.

Dr. Gerbino, Nate's previous orthopedic surgeon, came in and said it had been confirmed. Nathan refractured the same spot in his femur. This time it was a crack in his bone and not fractured all the way through like he had previously done. The bone was not as displaced this time. But a fracture is a fracture. Same amount of healing time in you guessed it, a spica/body cast. I couldn't hold back the tears. I saw our summer of fun we had planned just go right out the window. I was devastated. My selfishness was shortlived though as the words that came next from Dr. Gerbino still haunt me.....

"So the femur is refractured but there is a notable change. There is a mass and a weakened spot in the bone that have us all concerned." The word "mass" echoed through my brain and I for once was speechless. A mass I thought...A tumor?? He assured that it didn't look like a tumor but what was worrisome is Nathan's medical history. He said it keeps everyone on their toes.

Dr. Gerbino stated that the orthopedic oncologists had already been paged to come down and take a look at the films. Nathan's medical history is very scary and the worst has to be assumed unfortunately. Their fear was that leukemia infiltrated this bone and weakened it making it susceptible to breaking so easily again. I was absolutely terrified with what I was hearing. Every nightmare and worst case scenario was possibly before us. I wasn't ready to jump ship yet though and totally lose it. I knew we had to take it a step at a time and go from there. My main focal point was looking into Nathan's eyes as he smiled and knowing how tough this little guy is.

So the original plan was to biopsy this area of the bone to hopefully rule out anything. After the doctors got together and looked at everything again, they decided to leave it be and just get a CT scan after the bone was set and he was in the cast. I got some positive vibes from this because if they were ultra concerned, they would undoubtedly biopsy. Especially given his history. This gave me a glimmer of hope that everything was okay and that this was just scar tissue from the previous fracture.

On Wednesday, July 13th, Nathan went to the OR to be put under general anesthesia to have his cast put on and to have a CT scan performed. He was to be intebated (tube down his throat) which always makes me leary because it's so invasive but I'd rather have his little airway open and clear.

He came out of everything a few hours later and I met up with him in the post op area. He was eating an orange popsicle and was in good spirits. He didn't understand the cast and looked to be slightly depressed at times. He knew what he was in for. I snuggled him and rode in his bed with him back up to 6 West where we were staying. He laughed every time the nursed bumped the bed into the wall. He finds mishaps very comical. He is so cute.

As soon as we got to the floor, I was chomping at the bit for his CT results. I drove everyone crazy and noone seemed to know what they were. So, I called the people in CT Scan myself. Thankfully, they gave me the results. And yes, it was exactly what I wanted to hear. "Great news. It seems there are no pathologic findings in this scan. It looks to be some old scar tissue but if there is more question, an MRI and biopsy should be performed." That was all I needed to hear. Of course not seeing anything like this at all would have been ideal, but we were at least grateful to be keeping our heads above water. Chuck and I felt like we had been without oxygen for the 24 hours prior to this good news. The Radiologist did also note that Nathan has severe osteopenia which is like osteoperosis in a child.

We were released at six o' clock that night after clearance from all of the doctors. We headed home and both enjoyed the open road and freedom from what used to be our second home. Nathan loved the fresh air and didn't really seem to mind the cast too much. He always makes the best of every situation. He is my hero. Our hero.....

Julia stayed at Grandma's so we met up with her and they reunited after what seemed like to be an eternity. She gave Nate kisses and pointed to him and said "boo boo". I hugged her and we didn't want to let each other go. We missed her so much.

So that was the saga. The never ending one it seems. Nathan will be seen by the orthopedic surgeons in three weeks to make sure everything is healing properly. They will take an X-Ray and go from there. He is looking at six weeks in the spica cast. We have to keep the cast clean and dry. This will be interesting in the hot summer with a three year old. I'm going to do my best but worst case scenario, they will re-cast him. Not a big deal. It's trivial in the grand scheme of things. I need to keep his spirits up and keep him as happy as I can.

Getting back to the osteopenia, Nathan is meeting with Dr. Ingrid Holmes on August 12th to discuss his bone density issues. Dr. Holmes is an Endocrinologist specializing in bone density. Nathan had a bone density test scheduled for July 14th but given the chain of events just two days before, it was rescheduled. Nathan is very frail and we are really worried about his safety. He goes to preschool four days a week and I worry about him falling and breaking bones at school. We are going to try to and nip this in the bud before it goes any further than it already has. We were told only 3% of children refracture in such a short amount of time. This is a big red flag and so the doctors are working hard to devise a plan to help him. This incident really lit a fire under everyone I hope. Stay tuned...

In closing, I would like to ask for your prayers to help Nathan through this difficult time. July 19th will mark three years since he was diagnosed with leukemia at 5 months of age. He is such a trooper and an inspiration to all.

We still have unsettled feelings about all that has gone on this past week. We pray that his blood work stay normal and that no signs of his disease resurface. I will keep you posted on everything that goes on. Please pray and pray hard. Thank you from the bottom of our hearts for your support. These past three years have been very trying on us. A parent's stomach, heart and mind can only handle so much. Words can't express it.....We just want Nathan to grow up to be happy and healthy. I wish all of these obstacles would stop getting in his way. He's been through too much.

Our love to you all,

Becky, Chuck, Nathan and Julia XOXO

Friday, June 24, 2005 3:08 AM CDT

Hey everyone!!! I am soooo incredibly sorry for the delay in getting you up to date with everything. Thank you for all of the emails checking in to see how we're doing. There never seems to be enough time in the day to get everything done. Getting the site updated has been on my mind. It's 2:30 in the morning right now but I'm at work and have a few spare moments. So much has transpired since January. So here we go.............

On February 18th, Nathan slipped and fell in the dining room. I was in the kitchen making dinner and heard him fall. I went to see if he was okay and he couldn't get off the floor. He was crying and couldn't catch his breath. I called my husband on his cell phone and he advised me to call an ambulance. I was hesitant thinking we were overreacting but then when I realized how much pain he was in, I knew it was time to call 911.

The ambulance came and Nate was transported to the hospital I work at. I know all of the local paramedics from working in the ER. It's nice to have friends/medical professionals right by your side. I was sitting in the back of the ambulance with Nathan while they called in the patch to give the hospital details on Nathan's status. I could hear the nurses I work with so it was comforting to know we were going to a familiar place. Nate was strapped down and immobilized on a backboard. He was so frightened. I was just numb. I've been through so much with him, it takes a lot to rattle me. I knew something was wrong, but wasn't sure what. None of us knew at that point. Chuck kept saying he thought his leg was broken. And in the end, Chuck was right.........

Nathan had an XRay of his legs and it came back inconclusive. No fractures had been seen on the film. Nathan was sent home on Tylenol with codeine after being diagnosed with a pulled muscle. The next 48 hours were grueling. Nathan couldn't move, eat, sleep or do anything. I kept in close contact with the on call pediatrician given it was a weekend. I advised her of his extreme discomfort and the unsettled feeling in my stomach. Being a mom, especially a cancer mom, you just know when something is wrong.

He had fallen on a Friday night. By Sunday morning, he was in agony. He couldn't even move. I called the pediatrician once again and advised her I was bringing him back to the ER. She agreed.

Another Xray was taken. I had learned that a film of his femur was not taken the night of the fall. We had a different doctor on this day (Sunday). The ER doc came in and said, "you have one tough little boy." He held the XRay film up to the light and said, "your son spiral fractured his femur. Very badly." His left thigh bone looked like it had been sawed in half. I was stunned. I burst into tears and couldn't believe what I was hearing. Thankfully my husband is very stoic in situations like this. I'm usually very strong, but I had felt let down. I couldn't believe Nathan, my little warrior who has endured SOOOO much, was misdiagnosed. Hasn't he suffered through enough in his three short years of life? I paced around and called the pediatrician on call and told her the diagnosis. She apologized profusely and asked that I keep her informed. (She was the doctor who called me in tears to advise us that Nathan had leukemia. She knows Nathan well.)

Nathan was immediately transferred down to Boston via ambulance. At least I got to ride in the front seat that time. I felt so clausterphobic in the back.

We spent two days down in Boston while Nathan had a spica cast placed. It's a cast that starts at the top of the chest and goes all the way down to the ankle. He was to have it on for six weeks. I felt so sorry for Nathan but he is such a strong kid. He smiled and was happy to see his old nurses on the bone marrow transplant floor. We stayed there for a night to limit his exposure to the general hospital population. He is still very fragile. Literally....

The orthopedic surgeon came out after casting Nathan and advised me he was very concerned with Nathan's bone density. He said his bones were thin and susceptible to breaking easily in the future. I got on the phone with his oncologist and asked her what we should do. We at this point today, are still trying to figure out what to do with this issue. Ostheoperosis meds for elderly people are not well studied in children. They are very hesitant to introduce that into Nathan's little body. So we are still waiting to see what they are going to do.

So that is our traumatic experience in a nutshell. I have been wanting to post it up since it happened but have been having a hard time with everything lately. Re-living everything makes it really hard. It's catharsis but at the same time, extremely hard to think about all that has happened to Nathan.

Next month will make three years since Nathan was diagnosed with leukemia at 5 1/2 months of age. July 19th to be exact. It's a hard time of year for us as it brings back many memories. Good and bad. The whole experience has made us incredibly strong but those moments of weakness certainly take hold and knock the wind out of us from time to time.

For another sidenote on Nathan's health, Nathan is being treated for hemochromatosis. Hemochromatosis is iron overload in the liver. His liver function tests and faratin level (iron level in blood) have been elevated for the last year. The consensus opinion among the doctors initially was that it was a result of the multitude of blood transfusions Nathan received. They sent off a blood sample to have it tested to see if it was the genetic form of hemochromatosis and it is. He has one copy of one of the "bad" genes. The large amount of blood transfusions Nathan received most likely kicked this disorder into high gear. Nathan having this "bad" gene means that Chuck or myself gave him this genetically predisposed condition. We have to get tested to see which one of us has it. We could have it and be symptom free forever. I'd just rather know so that we can keep a watchful eye on it.

The treatment to lower the iron level in Nathan's body is to do phlebotomy treatments. They draw about 60 cc's of blood (a couple of ounces) every three weeks. We have to drive down to Boston to have this done. It's quite a task for one mama and two babies but we make it work. There's no limit to what we'd do for our Nathan.

These treatments will be done until further notice. They watch his faratin level (iron level) closely to see where we stand. Our hope is that one day he won't need the phlebotomy treatments at all or as frequently. Stay tuned for his progress in this.....

Well, that's all folks. Sorry for the excessively long winded update but as you know, we had a lot of catching up to do. I promise to be better about it. Please sign the guest book to let us know you stopped by. The link to it is below.

Thank you for your thoughts and prayers as we can always use them. We appreciate your vigilance in keeping up to date with Nathan's progress and how we're doing overall. It means a lot to us.

Oh and one more thing, Julia had her 18 month well baby check up today and did very well. She is 33 1/2" tall and weighs 22 lbs. Tall and thin with "great hair" as her doctor always says. She is bound to end up on a modeling runway someday, LOL. We can hope for great things right? She also has about 30 words in her vocab and is smart as a whip. She is putting 3 words together as well. "No Nay Nay, (Nay Nay instead of Nathan) Stop!!" She is always ordering him around. Poor Nate, LOL.

Well that's all for now and we'll be sure to check back in soon. Take care and give your kids a hug!!

All of our love,

Becky, Chuck, Nathan and Julia XOXO

Thursday, January 27, 2005 11:53 PM EST

Hey folks! Happy New Year!! Hope everyone had a nice holiday season. We had a great Christmas and New Years but it all ended too quickly. The kids had a blast visiting with family and opening gifts. Chuck and I loved living vicariously through the kids. We drove around and looked at lights and really got the kids excited for Christmas. Nathan couldn't wait for Santa to come!

Sorry for not posting in more than two months. It's been extremely hectic around here. We've had wacky weather too. The snow doesn't seem to want to let up on us lately. I love the first snowfall but that's about it. The kids are loving it but we are sick of it!

Julia turned one on December 3rd. I can't believe how big she is getting!! She is learning to talk. She can say a handful of words and it's just adorable. She has quite the personality. She loves trying to keep up with Nathan. They are so much fun.

Nathan starts preschool in a couple of weeks so Chuck and I have been busy meeting with his teachers and administrators. He can't wait to go! I am soooo nervous. I am EXTREMELY overprotective of Nathan but who wouldn't be given what we've been through. I know this will be very good for him and I know I have to let go someday. It's just hard. I hope he makes lots of friends.

Now for the clinical hoopla. We will be going down to Boston Monday the 31st to meet with an Anesthesiologist at Children's. Nathan is scheduled for a sedated MRI of his liver the following day. The MRI is scheduled first thing February 1st. We are still trying to get to the bottom of his elevated liver function tests. The consenus opinion is that he has "iron overload" of the liver. This can irritate the liver and cause a variance in his bloodwork which we have seen for about a year. The treatment will vary depending upon what they see. Stay tuned. I will fill you in on details as soon as possible. Please pray that the procedure goes off without a hitch. I always worry when they put him out. He's had adverse reactions to anesthesia in the past and it's a very scary thing. Please pray for our little guy.....

In happier news, Nathan is turning the BIG 3 on Sunday January 30th!!! It is so exciting. We can't believe it's been three years since our precious little boy entered our lives! So much has transpired since his birth but we have learned so very much about life, adversity and perserverance. We are so proud of our little guy and what he has acheived and overcome!! We love you Nathan Hunter!!

Well I'm off to bed now. I thank you all for checking in on us and be sure to sign the guestbook. Nate and I usually stop in here to look at the pictures & guestbook before going to Noggin.com. We'd love to hear from you.
:-)

God Bless,

Becky, Chuck, Nathan and Julia XOXO

P.S. GO PATS!!!

Friday, November 19, 2004 2:15 AM EST

Our dear faithful Nate followers,

I can't sleep so I am posting a message to let folks know of an important and extremely meaningful event that occured. I failed to mention in my last update that we spoke with Nathan's bone marrow donor on the phone a couple of weeks back!!! She is 27 and lives in Texas. We signed release forms with the Dana Farber to be able to speak with this amazing woman that saved our son's life. It was so emotional for all of us. Chuck answered the phone and I could tell by the look in his eye that it was someone very special. He spoke with her for awhile and then I got on the phone. We talked for about a half hour about everything and both cried throughout the conversation. We talked about his disease, his trials and tribulations, and how he is remarkably strong thanks to her generous gift. She is incredibly sweet and we can't thank her enough for her precious gift to Nathan. We have sent her pictures of the kids and will continue to correspond with her. Nathan is eligible for a Make a Wish trip and we are looking for some way to include she and her two sons. It looks like we are leaning towards "Give kids the world." With this, we would receive VIP passes to Disney Land and as I understand from families we know that did Give Kids the World, we would be treated like royalty down there. We would stay in a special village in Disney Land. We may go this spring but we are not sure yet. We want Nathan to decide what we do because this is of course, his wish. We would love to meet this amazing woman someday so we thought this couldn't be more perfect for she and her young sons. We are truly indebted to her and feel so blessed to have her in our lives forever.

As a sidenote, we will not be traveling to New York City as we had planned for Nathan's liver test. We have since learned that this particular test has an age requirement of five years. The doctors are still working on the next step in regards to Nathan's liver. Stay tuned......

On a more fun note, little Miss Julia will be turning one on December 3rd! She is going to have her very own "Disney Princess" party. I can't believe she is almost one. She is doing great and has added "no-no & uh-oh" to her vocabulary. She loves to drop a toy and say "uh-oh!" It's adorable and she and Nathan have some very interesting conversations with each other. She tries so hard to imitate him and keep up with his fast pace. When I tell she or Nathan no, she shakes her head back and forth. She's a little mommy already!

As Thanksgiving approaches next week, we can't be more thankful to share it with those we love. Just when life throws a curveball our way, we look into our little boy's eyes and thank God he is here with us. The sun seems to shine brighter when I think about all that we've gone through and where we are now. Nathan is my inspiration in life. When life gets the best of me sometimes, he grounds me with that glimmer in his eye and playful smile. Julia's too. We are so blessed. I was reading through the entire journal history tonight and relived some of it. It's surreal to think of where we were a year and a half ago when we were given very little hope and our lives were unraveling quickly. I am so thankful we will all be together as a family this year during the holidays as we had to skip out of last year's festivities due to Nathan's isolation post transplant. We are so thankful to have such good people in our lives who with the power of prayer, got us through the unthinkable.....

In closing, thank you all so much for your kind words and good thoughts in the guestbook and in the emails I have received. It is gratifying to know that Nathan is an inspiration to so many of you. It means a lot to us and remember, always keep the faith.....

Happy Thanksgiving everyone and have a wonderful holiday!

All of our love,

Becky,Chuck,Nathan,and Julia

Saturday, November 6, 2004 3:28 PM EST

Hey folks!

Thanks for visiting us and hope you and yours are happy and healthy. We are all doing well and everything is status quo. Nathan has been feeling well and has been relatively healthy. The kids both had terrible colds with high fevers but are better now. I had strep throat a couple of weeks ago but thankfully noone else contracted it. Chuck has been the only one to stay healthy thus far this year. We all got flu shots so hopefully we will all avoid the flu this winter.

We went down to Boston on Tuesday, October 26th and everything went well. They drew Nathan's blood and his labs came back looking good. His liver function tests are still elevated which is a concern. They have been elevated for several months and it is unknown why. The doctors are leaning towards "iron overload". This is a good possibility as Nathan had received several blood transfusions while he was on chemotherapy. We'll just have to wait and see what to do next. We were going to go to Columbia University Hospital in New York City for special testing but we recently found out that they have an age requirement for the "SQUID" test. Nathan has to be 5 years of age to undergo this special liver test. He may have to undergo a liver biopsy in Boston which is invasive and carries several risks. I am hoping this issue will resolve on it's own. Keep praying for the healing of Nathan's liver.

Another concern that we discussed at the clinic was Nathan's heart and his slow growth. Nathan will be 3 in January and he is just barely tipping the scales at 26 lbs. He is 34" in length. He is very tiny for his age. He has been eating so well lately so it's baffling to not see him gaining weight. It is extremely frustrating. He drinks pediasure which is a nutritional drink everyday and he eats healthy all day long. We've met with his nutritionist on several occasions and we have a good game plan but it's just not working. That is where his heart condition comes in to play. Nathan's doctors seem to think his heart may be hindering his growth. We will be meeting with Nathan's cardiologist next month. Stay tuned.

Nathan continues to receive physical therapy and speech therapy on a weekly basis. He is starting to speak more and is understanding more. It's a slow process but we are definitely seeing progress. Julia is doing great. I can't believe she is going to be one in less than a month!! It doesn't seem possible. She is trying so hard to walk to keep up with her brother. She's been crawling and pulling up to stand for a few months and just wants to walk in the worst way. She has such a personality. She and Nathan both. They are surely our spitfires. The apples didn't fall far from the tree. :-)

I have to get going but thanks again for checking in on us and I'll be sure to update soon. Be sure to sign the guestbook so that we know you stopped by. :-)

Take care!

Lots of love,
Becky, Chuck, Nathan and Julia

P.S. Special thanks to the Red Sox for their incredible year and for being our world champions!!! We are thrilled and it has been Red Sox mania in our house for the past two months. GO SOX!!!!

"Seeing the strength and determination of the children from Dana-Farber is very humbling. As athletes, we may bring smiles to their faces, but the fact still remains: They are the real heroes."
- Johnny Damon from the Boston Red Sox

Tuesday, August 31, 2004 1:27 AM EST

Hello faithful Nate followers!

Hope this note finds everyone in good health and enjoying the little we have left of summer. Sorry for the delay in updating!!!! We have had a wonderful summer despite one little bump in the road. I was diagnosed with viral meningitis on July 11th and had to spend a couple days in the hospital. It was terrible!! I awoke with what seemed to be a migraine but got progessively worse very quickly. With a fever of 102.3 and a barf bucket in hand, I reluctantly went to the ER. I didn't want to go. I thought it would pass but it didn't. So after some bloodwork, a normal CT scan, and a spinal tap (eeewww) I was diagnosed with meningitis. I was bed bound for a week and a half while I recovered. Thank goodness for Grammys and Grampys!! My parents were a big help while Chuck continued to work. He relieved their duties when he got home and boy were they glad to see him pull in the driveway! :-) Nathan and Julia are quite the handfuls especially when together. We call them our firecrackers for good reason. :-)

This is the first summer since Nathan has been born that we have been completely out of the hospital. July 19th made 2 years since diagnosis for Nathan and we can't be more thrilled to celebrate these fun moments at home! We spent most of the last two summers inpatient down at Boston Children's Hospital. He is doing incredibly well and we credit that to his remarkable strong will and of course, the power of prayer. Keep up that good fight Nate!!

To fill you in on the more clinical items, I'll start by saying Nathan's labs looked great when we went to the clinic one week ago. For those who know me, I don't think I was able to breathe until I knew everything was perfect! I'm sure fellow parents going through this know what I mean. The unknown can be such an evil thing. Nathan's liver function tests came back elevated again but the doctors have a good handle on it and we'll just watch and see. His poor little liver has endured more than most people's have in a lifetime! Total body irradiation is so tough on everything. Although it seemingly taxed his liver, we are so thankful it eradicated his disease as it was a key element in Nate's quest for a cure. We will return to Boston in two months for a check up.

Another big milestone reached one week ago was Nate has started receiving immunizations!!!!! He hasn't had those since he was four months old, pre-diagnosis. Once a child reaches a year post transplant, they are eligible to receive their immunizations. So, last Tuesday was the big day. Four shots in all! Ouch!! Poor Nathan. :-( He took it like a trooper and even smiled at the nurses when we were leaving. He has so much love in his heart. He is so forgiving.

August 8th marked one year post transplant. What an emotional day! Chuck and I were both brought to tears a few times that day while reminiscing about Nathan's long, courageous journey. Two years of uncertainty and painstaking decision making as parents, almost unbearable at times. Our little warrior was given very little to no hope when he relapsed 15 months ago, we had even prepared for the worst, but he fought and hung on with us...We weren't letting go, and neither was he.......

Through it all, we are well and looking forward to the future. Julia, the ray of light that entered our lives this past December, has completed our hopeful, happy family. Praise God. Our little sunshines bring so much fulfillment to our lives. We are so grateful for everyday.

Thank you all for your enduring love and support as you have carried us through the most trying times of our lives. Thank you for your kind words as they still help us get through some tough days....Thank you.

Praise be to God and to quote a well respected Dad in the Caringbridge world, "GO HUG YOUR KIDS!!!!" Copy and paste the URL to visit them: http://www3.caringbridge.org/nc/princessmadison/

With all of our love,

Becky, Chuck, Nathan and Julia XOXO

**** New photos in gallery ****

Thursday, July 1, 2004 1:02 am EST

Hey Folks!!!!!

So sorry for the delay in posting an update. This is the longest stretch of time without an update on the little man. He is doing fabulous!!!!! He is growing stronger everyday and enjoying this nice weather.

A lot has transpired since I last updated. We moved on June 1st to our old but new to us house. The house was built in 1924 but holds a lot of charm and we love it. We are the second owners in 80 years. We are doing construction right now so I can't wait for that to be done with. It needs cosmetic updating so we just ripped apart the three bedrooms upstairs. It had old horsehair plaster. What a mess that was!! We are rewiring the house right now and beginning to sheetrock this holiday weekend. We kept the original woodwork in tact so new sheetrock will complete the job and make it beautiful. I'll post pictures when it is done.

Nathan has been well healthwise. We are making our trips to Boston more infrequent and we can't be happier about that. We go every two months now. It is so nice. We are starting to live a "normal" life. We still have a lingering fear of relapse but we take each day as it comes and make the kids as happy as we can. They love the new house. We have a yard with a play area and sandbox. We love to see how excited Nathan is everytime we set out to play. He is just thrilled.

We've had a bit of scare with his liver the past couple of months. His liver function tests were elevated and the doctors weren't quite sure why. They have been following him closely and still haven't gotten to the root of the problem. The good news is that they have ruled out any and all viruses. They did a liver ultrasound a few weeks ago and his liver looked great. The levels have improved so now they are just keeping an eye on them. He will have his blood drawn again in the end of July to see what they are. They have been fluctuating quite a bit so it's hard to tell where they may go. I am happy to report they have gone down the last two times they were drawn. Keep your fingers crossed and Nate in your prayers as we hope to see them at a normal level.

Julia is getting big as you will see from the pictures in the gallery. She will be 7 months old on July 3rd. It's baffling to know that over half a year has gone by since her birth. She is such a joy. She and Nathan adore each other. They babble back and forth to one another now and enjoy each other's company. We feel so blessed.

We hope all is well with everyone and can't wait to hear from folks on the message board as to how it's going. We miss everyone and can't thank you enough for continuing to pray for Nate's recovery and just by simply visiting this site means a lot. I can't wait for the day where I can sit down and read through this site with Nathan to show him how fortunate we are to have such loving, caring people in our lives. We thank you....

Much love,

Chuck, Becky, Nathan, and Julia
XO
*~*Check out the new pics in the gallery!*~*

Friday, April 16, 2004 2:48pm

Happy Spring everyone!

All is well here and we hope the same for all of you. Nathan is doing great as we approach the one year post transplant mark on August 8th. That will be his "second" birthday. His new lease at life. We can't be more happy with his progress.

Nathan's port was removed on April 5th and the procedure went off without a hitch. He was in the OR at Boston Children's Hospital for about an hour. They also performed an echocardiogram at that time. His cardiologist (Dr. Brown) said he was happy with what he saw. They did see a small muscular VSD. We thought it had closed but they got a really good look at the septal wall of his heart. The VSD is 1-2 mm in size and will hopefully close with time. It doesn't seem to be causing issues for Nate so we'll see what happens.

We had a really nice Easter. We went to my parents house and to Chuck's parents house and got to see everybody. It's been a long time since everyone has seen Nathan due to isolation. We are starting to venture out more but only to outdoor venues. No stores or shopping malls for a while. Nate still doesn't have a normal immune system. He also is not up to date on his vaccines so we need to be super careful as to what he is exposed to.

Julia had her 4 month well baby check up on April 14th. She weighed in at 15 lbs 3 oz and is 26" long. She's in the 75th percentile for her weight and the 95th for her height. She's starting to slim down as she grows. She's going to be tall like her mom and dad. =) She eats rice cereal and baby food now. She loves her food. She still won't take a bottle but we're working on it. She only wants her mama.

Nathan is starting to grow and gain weight too. He weighs about 26 lbs. His appetite is great and he loves to eat. He loves going to the park because he knows he will get an icecream on the way home. He is starting to talk more and just amazes us everyday. Thank God for his success. He is our miracle. We love our babies more than anything in this world.

May 14th will mark one year since the day we found out Nathan had relapsed. It was by far one of the darkest days of our lives. We had found out just one month earlier that we were pregnant. The thought of bringing a child into this world and possibly losing another was heart wrenching. Nathan had a less than 10 percent chance of making it even two months. It shattered us to hear the doctor say those words. I looked into Nathan's eyes after the meeting and knew he would be okay. We had a fighter on our hands. I knew in my heart we were in for the fight of our lives and we were going to beat this with the grace of God. We are forever indebted to his bone marrow donor for his second chance at life. We can't thank her enough. We can't wait to correspond with her come the one year mark. We haven't been able to know anything about her thus far due to confidentiality. We can't wait for that special day.

We will be moving soon as we sold our house in less than two weeks. The house hunt continues as we look to find our dream house. I'll keep everyone posted as to what happens. Stay tuned. :)

Sorry for being so long winded. I had a lot of catching up to do. Thank you all so much for checking in on us. I will continue to keep folks updated on Nate's progress. Enjoy the nice weather to come!

All of our love and gratitude,

Becky, Chuck, Nathan, and Julia

Be sure to check out the photo album. :)

Thursday, February 26, 2004 2:12pm EST

Good afternoon Folks!

We hope all is well with everyone. Everything is status quo and going well here. Nathan continues to be on the path of recovery and good health. We thank God everyday for keeping him safe and well over the past 6 1/2 months. February 8th marked the six month post transplant mark. We can't believe how well he has done. We had prepared ourselves for complications but he has done fabulous to date. Let's keep our fingers crossed. : )

We went down to Boston on Tuesday for a clinic visit and learned of great news. Nathan will be getting his port out very soon (hopefully within a month) and he only has to go every two months now. We will miss seeing the docs and nurses but I gladly welcome not having to pack both kids up to go down there. It's a lot of work with both of them. It will be weird not seeing Nathan with a line in his chest. The port was the fifth "line" they put in. Normalcy is creeping back into our lives and I'm not sure if I can handle it. The thought of relapse scares me to death but we will press on and take each day as it comes. It's only fair to Nathan to live life to the fullest and not dwell on the "what ifs".

Nathan got to meet Johnny Damon from the Red Sox a few weeks ago at the Jimmy Fund Clinic. Check out the photo gallery to see the picture of them. I am a huge Sox fan so I was thrilled.

Nathan had a little mishap a two weeks ago. I was at work when I got a frantic phone call that Nathan had cut his hand. He had reached into the garbage can when Chuck wasn't looking and cut his pinky finger on a soup can. Chuck and my sister Abby rushed him to Elliot Hospital. The irony of it all is that I work at the hospital in the Emergency Room. I register all of the patients that come in. I was able to get a room prepped for him so that he would not be exposed to anything. Chuck had put a mask on him as well. Nathan required two stitches on his little pinky. Poor little guy. As if he hasn't been through enough. The nurses were joking with me after because they had noticed that I seemed rather unphased by all of it. I said, "that's nothing!" For once, we finally had a normal kid thing happen. Nathan received a tetanus shot and we were on our way. The nurses and doctors worked expeditiously in getting Nathan fixed up and out the door as quick as possible due to his weakened immune system. I was really worried that he would get sick due to all of the sickness we have been seeing but he has yet to get even a minor cold this season. I am so grateful. Needless to say, we got a covered garbage can for the kitchen. No more ouchies from the garbage can!

Julia had her 2 month well baby check up on Feb. 7th and she weighed in at 13lbs, 11oz and was 24 3/4" in length. She's off the charts. She is soooooo big!!! I love it. She has rolls. Nathan never had any rolls. He was always petite. She is such a joy.

Nathan has been sluggish in the growth department which warranted a thyroid check. The test came back perfectly normal so we can only assume it is a result of all that Nate has been through. He drinks a lot of pediasure which contains a lot of calories and nutrients. We are hoping this will help. He weighs almost 25 lbs and he's two. He is small but looks healthy. We'll just continue to monitor it. He might need growth hormones down the road due to the radiation but we'll see. The doctors are watching him closely.

Lastly, we got a puppy for the kids. Her name is Maisy and she's a purebred boxer. If you look in the photo gallery, you'll see a picture of her. She's eight weeks old and just adorable. Chuck has always wanted a boxer. Maisy is great with the kids. She keeps Nathan entertained during the day. We've read that boxers are great family dogs and great to have with kids. She's a joy but A LOT of work. She's worse than the kids! I wish I could put a diaper on her too.

That's all she wrote but I will check back again soon with new pics and an update. Take care and hope everyone has a great weekend!

Our love to all,
Becky, Chuck, Nate, and Julia
XO

Monday, January 26, 2004 4:35pm

Hello to our Friends and Family,

Sorry for the delay in updating! We are all doing well and we hope this note finds everyone doing well. Nathan is still truckin' as we approach the 6 month mark post transplant on Feb. 8th. He will be off the cyclosporin in less than two weeks. I can't wait. That stuff smells yucky and Nathan throws a fit every time I pick up the bottle to draw it up for him. He hates it. He will remain on the bactrim until further notice from the doctors. One med three times a week is not bad at all! We can't wait. Hopefully he will never have to go back on any of those meds EVER again.......Keep your fingers crossed that GVHD (graft vs. host disease) doesn't surface after he is completely weaned off of the cyclosporin. We pray everyday that Nathan is healed and on the bright road of recovery. Please keep praying for our little guy as the power of prayer has certainly helped us. We extend our deepest heartfelt gratitude for all of the prayers and good thoughts over the last year and a half for Nathan's good health. Thank you. We truly appreciate it.

In other news, little Julia is getting sooooooooo big!! She will be two months old on February 3rd. I can't believe how time flies. It is amazing. She has brought such joy to our lives. She is very good natured and a delight. We love our little munchkins so much. They make us smile and feel like kids again ourselves. It is amazing to watch them grow. Praise God for Nathan's flawless recovery to date. Without Him, none of this would be possible and a void too large to speak of would exist in our lives. We never take anything for granted as we have seen first hand how precious life is. Give your kids an extra hug tonight in recognition of those with children who are sick or have become angels.

In closing, I failed to mention that little Nathan will be the big TWO on January 30th!! We won't be having a party this year due to his compromised immune system but we plan on getting him a cake to go nuts with. I'll be sure to post pictures of that mess. = )

Take care and I will check back in again soon. I would also like to say a quick thank you to Kim, Kody's mom for designing the background on this site. Kody is an adorable boy and I encourage you to visit his site at http://www.caringbridge.org/fl/kodysstory/index.htm. Thanks again Kim!!!

Our love to all,

Becky, Chuck, Nathan, and Julia

As a biased New Englander, GO PATRIOTS!!!!!!!!!!!!!!!!!!

Saturday January 3, 2004 2:55pmEST

Dear Friends and Family,

I am so sorry for the delay in updating. It has been chaotic but good around here.

For starters, little Julia entered the world safe and sound on December 3, 2003 at 2:57pm. She weighed a whopping 8lbs 10oz and was 20 1/2" in length. She is a wonderful addition to the family and we can't feel more blessed. Nathan loves his baby sister very much.

Nathan continues to keep on going strong as he is being weaned off of his cyclosporin more and more each week. He has not had any complications to date and there have been no signs of GVHD. We thank God everyday for our little miracle. We can't be more thankful for his progress. He is such a blessing.

I will update the photo gallery with pictures of Nate and Julia. Be sure to check it out. :)

Happy Holidays and we hope and pray for a happy and healthy new year for all.

All of our love,

Becky, Chuck, Nathan, and Julia

******I updated the photo album and apologize for the photos being so large. I have been unable to make them smaller. Please note that I am updating the slide show with recent pics. I will update the site in the next couple of days with it...ENJOY!!********

*****UPDATE: We have received wonderful news....(drumroll please) Nathan is 100 percent donor cells!!!! YEAH!!!!!!!!!!**************

Saturday, November 8, 2003 11:50am

3 MONTHS POST TRANSPLANT!!!!!!!!!!!!

Hello to our friends and family,

I am so sorry for not posting in such a long time. Everything has gone really well since Nathan's transplant. He has been off the steroids for a couple of weeks and has had no complications. They are going to start weaning him off cyclosporin starting Day 100. I can't wait for that as that med smells really bad and I can only assume it tastes bad too. Nathan hates taking it. He is only on two meds right now. Cyclosporin and bactrim. He takes the bactrim twice a day Monday, Wednesday, and Friday. Not too bad. He is doing excellent. He is growing and gaining weight and looking incredibly well. You would never know he has been through so much.

Nathan is still behind developmentally so we have physical therapy coming in once a week to work with him. He is now 21 months old and close to walking but having issues doing it completely on his own. It frustrates him so I am glad we are working on helping him move forward with it. We hope to have him walking on his own by Christmas.

In other exciting news, I am due to have Julia in less than a month. We can't wait to welcome our new baby girl. We can't wait to see Nathan's reaction to his new baby sister.

That's all for now. I will check back in soon. Please remember that no news is good news and I apologize again for the delay in the update. We hope everyone is well.

All of our love,

Chuck, Becky, and Nathan

Wednesday, September 24, 2003 4:44 PM EST

Day 45

Hello to our friends and family,

We hope this update finds you and yours well. We are doing great. Nathan is 45 days out of transplant and trucking right along. We can't be happier.

There have been no signs of graft vs. host disease so he is slowly being weaned off of the steroids. He takes 1.3 ml's by mouth once a day. Not too bad. They just started him on bactrim for PCP prophylaxis 3x a week. He isn't on too many meds which is nice. I thought it would be much worse.

We are so happy to be home and thrilled with our little guy's progress. He amazes us everyday. He is into everything and is quite the handful but we welcome it. We love to see him smile.

I am sorry for not updating this site more but it is always hectic around here. Just remember that no news is good news. : )

Lots of love to all,

Becky, Chuck, and Nathan

P.S. The slideshow will contain new pics soon. I have updated the photo gallery. Enjoy!

Tuesday, September 9, 2003 11:55pm EST

Day 32

Hello everyone!

I am so very sorry for the delay in posting an update. We have been home for a week today and it has been very hectic. We've made frequent trips to the clinic in Boston. Nathan had a port put in yesterday. He did fine with surgery. We are thrilled that he is through with external lines. As a recap, Nathan pulled out his fourth line during our inpatient stay for transplant a couple of weeks ago.

Nathan is feeling well and happy to be home. We spent one month and one day inpatient for transplant. He is looking great and there are no signs of graft vs. host disease thus far. We pray that he continues on this course. They are slowly weaning him off of the steroids. Thank God. Steroids make Nathan a tempermental, moody baby. It's hard to reason with a 19 month old with "roid rage". He is a fiesty little guy.

That's all for now. Thanks for checking in. I will keep everyone posted as time permits. Thanks for keeping us in your prayers.

All of our love,

Becky, Chuck, and Nathan

Friday, August 29, 2003 12:55 am EST

Day 22

Our dear friends and family,

Sorry for the delay in updating the webpage. It has been hectic around here.

I have great news. Today is Day 2 of engraftment! Nathan's ANC (absolute neutrophil count) went from being 200 on the 28th to 650 yesterday! Hooray Nathan! It appears we will be going home on Monday. We are thrilled. We are so proud of Nathan. He sailed through transplant with not one complication to date. We are truly blessed. We thank God everyday for our little miracle.

In other exciting news, Nathan decided he no longer wanted a central line the other day and pulled it out. It had been on it's way out for awhile. It officially came out and Nathan couldn't have been more pleased. The nurse put a peripheral IV in his hand which lasted less than 24 hours after "Houdini" ripped it out. His platelets were at 22,000 (really low) at the time so there was blood everywhere. I saw the aftermath because I had gone to get lunch and had left him with a volunteer. Needless to say the volunteer was horrified. I felt bad for her because she thought she didn't do enough to prevent it. Nathan moves at lightning speed and sometimes these things happen. A picc line was placed in his arm on the 28th. They are going to remove it on Sunday in order for us to go home. He is scheduled to get a port sometime next week. No more external lines for this wild one! That was his fourth line and it just proved that toddlers and external lines don't mix.

Please keep praying for his counts to stay on the upswing. We are so pleased with his progress. Thank you all for keeping us in your prayers. God is listening.

Enjoy the long weekend and take care. Please sign the guestbook to let us know you stopped by.

Best Regards,

Becky, Chuck, and Nathan

Monday, August 25, 2003 9:45 EST

Day 17

Good morning everyone,

I am sorry for the delay in posting an update. Things have been good but hectic around here.

Nathan is still going strong and doing incredibly well. He is just amazing. He has not had one complication. No fevers, mouth sores, etc. (Knock on wood.) He has been eating up a storm. The medical staff is amazed at how much he has been eating. He needed TPN (iv nutrition) for one day about a week ago. They took him off it because he was eating so much. He has also been off the PCA (continuous pain meds) for over a week. He has really sailed through all of this. We feel so blessed and grateful that he has done so well.

We still have much to worry about. We will be watching him very closely for graft vs. host disease. Nathan's donor was a 12 out of 12 match with the same blood type but the risk is still there. She is female and Nathan of course is not so that slightly raises the risk. The good news is that babies Nathan's age tend to have less GVHD. The doctors said his bone marrow will adapt much better than even someone who is three. It learns to live with the new cells. So we are hoping and praying that this will not become an issue.

A few other potential issues that we need to watch for are kidney problems and late side effects from the radiation. Late side effects include: secondary cancers, cognitive issues, and growth issues. We will deal with what comes our way as it occurs. We plan to take it one day at a time.

The most scary potential issue that could crop up is relapse. We pray we never hear the bad "R" word again. The doctors said there is about an 80hance that the cancer will never come back. We pray that it never does. Nathan would not likely survive it if it returned. Please pray he stays in remission forever.

I would like to end this update on a good note by stating that it looks like Nathan is engrafting! He has been doing the bounce around game since day 14. His white count has been up and down. Today his total white blood cell count is 360 and has an ANC of 130. We hope to be home in a week as they think he will be engrafted (ANC of 500 for 3 consecutive days) very soon. GROW CELLS GROW!!!!!!!!

Thank you all for checking up on us and we hope you all enjoyed the beautiful weather this weekend. Thank you all for your outpouring support and prayers. It means the world to us.

Our love to all,

Becky, Chuck, and Nathan

Tuesday, August 19, 2003 3:34 est

Day 11
Good afternoon,

I hope this note finds you and your loved ones well. Nathan is doing amazingly well! He is not on pain medication anymore. He didn't get mouth sores or bum breakdown so his pain was minimal. I think his GI tract might have been a little sore from mucousitis but not too bad.

We feel so blessed that Nathan has done as well as he has. We spoke with doctors today and they said on a scale of 1-10, he is an eleven. He never stopped eating through transplant. He went on TPN (iv nutrition) for 24 hours but was taken off of it because he was eating so much. He is a trooper.

I apologize for not posting on this website more often. I update his original website more frequently as it sends an email to all to let folks know it was updated. I have this website for those who just want to type in the web address and go. The link to Nathan's other site is at the bottom of the page if you want to check it out.

All in all, things are great. We can't be happier. We are just waiting for him to engraft now. We hope it will be some time this week.

Thanks for checking in on us and we will "talk" to you all soon. Take care!

Be well,

Becky, Chuck, and Nathan

*******New pictures in the gallery*****

Wednesday, August 13, 2003 9:56am EST

Day 5

Good morning,

I hope this note finds everyone well. Nathan is still continuing on the right track. He is doing really well with eating and playing. His eating has slightly decreased today but I think he just has an upset tummy and is not up to eating as much today. We'll see how the rest of the day goes.

I went to my prenatal check up yesterday and everything looks good. I am now 23 weeks. For those who don't know, I am pregnant with a little girl. We can't wait to welcome her this December. (Due date: December 7th.) Her name is Julia Ivy.

I can't believe it's been five days since transplant. Time is just flying by. We are still in the early stages but I pray he stays on the right course. We all know what a tough little guy he is. He is truly a little fighter who has overcome so much. One of the nurses read Nathan's history and told me I have a little miracle on my hands. She couldn't believe what he has gone through at such a young age.

We hope you have a good day and thanks for checking in on us. I will continue to update as events unfold. I apologize for not posting a message for a couple of days but it's been uneventful, thank God.

Thank you for your continued prayers as they are being answered. We really appreciate you all thinking of us.

Be well and God bless,

Becky, Chuck, and Nathan

Saturday, August 9, 2003 9:40pm

Day 1
Good evening folks,

Just a quick update to let you all know that Nathan is still going strong! He is doing really well. He is very tired but who can blame him. He's been sleeping a lot. He is still eating and playing despite the fatigue. His spirits are up and the little guy just thinks this is routine. He is used to feeling yucky for periods of time but always keeps an upbeat little attitude. We are so thankful and feel very blessed that he is doing so well. We pray he stays doing well. We fear any complications that could be lurking on the horizon but keep the faith that he is going to surpass it all. That would be our Nathan! Tough little fellow that he is. We love him so much.

That's all for now. Keep those good thoughts and prayers coming as God is surely listening. Thank you in advance.

All of our love,

Becky, Chuck, and Nate the Great (His nickname on the transplant floor.)

Friday, August 8, 2003 10:25pm

Day 0

Good evening,

Nathan got his new cells today! Almost twenty four hours ago. He is doing great. He got them at 1:30am today. His donor even sent along an adorable stuffed animal and a card wishing Nathan luck. What a thoughtful gesture. The nurses said that they don't typically see that. We will be writing her a card in return. We cannot disclose any information. I can really only say thank you. I have to find out the complete details on what I can disclose from the Bone Marrow Registry. They are who put strict guidelines on confidentiality. We can't even put a return address on the envelope. I wish we could just meet her to say thank you and to tell her that we are eternally grateful for her.

Nathan is still eating and playing. He is very much unphased by all of this. He is much more sleepy than usual though. That is a side effect of the radiation. Fatigue is one of the most common side effects. Amazing!! Nathan actually has a common side effect and has yet to rewrite the rules. (Knock on wood.) We all know how Nathan likes to deviate from the textbook.

That's all for now and I apologize for not posting sooner but it's just been a hectic day. The phone has been ringing a lot and Nathan is into everything. He gets upset if he doesn't have my undivided attention.

Thank you for your continued prayers and support. They are working!

Much love and gratitude,

Becky, Chuck, and Nathan

Thursday, August 7, 2003 10:50pm

Good evening everyone,

Just a quick post to advise that the transplant won't occur until about 1:30 am. We were hoping it would happen sooner. The rumor is that if the donor is from overseas, then the transplant does not occur until the wee hours of the morning. Typically if the donor is from the U.S., the transplant occurs during the day.

I will post tomorrow morning.

Good night,

Becky, Chuck, and Nathan

Thursday, August 7, 2003 10:30am

Day 0!!!!!

Good morning everyone,

Hope all is well with everybody. Well, today is the big day!! Nathan will be receiving his new cells tonight. We are nervous and excited. Nathan won't have a clue as to what is going on. He'll just think it's another blood transfusion. We are so thankful he has reached this point. Praise God for allowing Nathan to have a second chance at life. We are eternally grateful for this.

Nathan is still feeling really well. No butt rash to speak of and he's had very little nausea and vomiting. He will be receiving his last dose of TBI this afternoon. His last tanning session as we refer to it because he has gotten a little tan. Very typical. He actually looks healthier than ever with those chubby pink cheeks! There is no evidence of soars in his mouth either. Those can still crop up but we pray they are not too bad.

They have started him on a very small dose of continuous morphine (0.1 mg per hr.) He was showing signs of mucousitis in his belly. Mucousitis is basically sores along the GI tract. Nathan has had this many times in the past. I asked for the morphine to get a jumpstart on the pain instead of waiting until it's out of hand. He really likes the disco lights now that he's on the morphine! He's a little out of it but comfortable most importantly.

I will post after he receives the new cells. I'll let you know how it goes.

Thanks for checking in on us and please keep praying for Nathan's speedy recovery.

Much love,

Chuck, Becky, and Nathan Wright

Monday, August 4, 2003 9:55pm EST

Day -3

Hello everyone,

I hope this note finds everyone well. Nathan continues to do well. Today was his first day of radiation. He did very well with it. They had to sedate him for the first session because the machine was broken. He had to be flipped to his stomach for ten minutes and we knew he wouldn't stay that way if he were awake. Thankfully the machine was up and running this afternoon. The nurses put on Blue's Clues and put a strap around his belly to prevent him from rolling off the table. He watched the movie and stayed almost perfectly still. He was so incredibly good. He was also starving because they wouldn't let him eat or drink between sessions. Six and a half whole hours. That's a lot for a little guy who doesn't understand why we are withholding food. Chuck and I felt so bad for him. We couldn't wait to run into the radiation room to give him his bottle. Boy was he happy to see us. He wasn't quite sure what was going on.

He's been very sleepy ever since the radiation. I've been told that this is common. It makes you feel like you have the flu or sunstroke. Achey, tired, and just not yourself. Poor little guy. I can't wait for this to be all over with. I breathe a little more with each day down however I feel anxious about the next day. And the day after that. It's never ending. I wish I had a crystal ball. We just want to take Nathan home to have him be a normal, happy, and healthy child in which he deserves to be. Being in limbo like this is the worst. We maintain a positive attitude but it's hard not to think about all of the "what if's" when I gaze out my hospital room window at night. It's a very lonely, empty feeling to have. It's hard to be away from your spouse and home and everything that is familiar in life. To be thrown into a different world and expected to swim rather than sink and maintain throughout is tough. We stay positive for Nathan. Everyday is a party if he is up to it. We are forever trying to make him laugh. Every smile is worth so much. It is what keeps us going.

Thank you for checking up on us and please continue to pray for Nathan's speedy recovery. We are truly indebted and can't express enough of our appreciation.

Take care and God Bless,

Chuck, Becky, and Nathan

Saturday, August 2, 2003 8:00pm EST

Day -6 for Nathan's bone marrow transplant.

Hello friends and family,

I hope this note finds everyone doing well. Nathan was admitted yesterday to begin transplant proceedings. He received cytoxan today with lots of hydration as one of the side effects is bleeding from the bladder. He will receive cytoxan again tomorrow. It runs over one hour. He seems to be doing well with it so far. He is still eating and drinking. Monday, Tuesday, Wednesday, and Thursday of next week will consist of Total body irradiation twice a day. He will be receiving a total of 1200 rads by the end of the fourth day. He will be receiving 175 rads per session. This will ablate Nathan's marrow in preparation of him receiving his new stem cells on Friday August 8th. It will be like a new birthday for him. A second chance at life.

We have kept busy over the past week. We brought Nathan to the zoo and to the amusement park. He loved the animals at the zoo. He didn't really know what to make of them. He went on all of the kiddie rides at the amusement park. He loved every moment of it. We look forward to bringing him back next year when he has a clean bill of health.

Transplant requires a minimum of nine months of isolation. He can be home for this. We will most likely spend the next six weeks in the hospital. If Nathan stays well, then he will stay home for the duration and visit the Jimmy Fund Clinic frequently. Nathan will have an immune system but it will not be up to par until about nine months to a year post transplant. It's best not to take any chances. He can be around family members that are 100ealthy. No children allowed. He can be around children outside because viruses and germs die outside. So no Chuck E. Cheese for at least a year. We have plently of time for that. He will miss his little friends and his cousin Eben but we plan to have plenty of entertainment at home. He will also have a new baby sister to play with come December! We can't wait.

I apologize for not posting on this website in awhile. To catch up with all that has transpired, you can visit Nate's other site by clicking on it at the bottom of this page. I promise to update this one along with the other one throughout the transplant process. I know my internet friends who only access this website want to stay posted.

Take care and enjoy the rest of the weekend. Thanks for checking in on us and for keeping us in your prayers.

Lots of love to all,

Chuck, Becky, and Nathan

Monday, July 14, 2003 4:52 PM EST

Good afternoon,

It's a GIRL!!!!! We had our ultrasound today and we found out we are having a girl. We are so excited. She appears to be very healthy. All of her organ systems looked perfect. We also had a fetal echo done this afternoon with a specialist and a pediatric cardiologist. Her heart looks completely healthy. The doctor said the only thing that she saw was that her aorta bends a little tiny bit when it should be straight but this is not a heart condition. It is not narrowed like Nathan's. The diameter of the aorta is uniform in size throughout. That in itself is a really good sign. A healthy child could have this and it could go undetected forever. It does not pose any kind of threat to her health and could actually be fine when they recheck it on Sept. 17th. The cardiologist said she is only being extra precautious because of Nathan's history. She said if Nathan had a healthy heart, then this wouldn't even be something they would double check on. Nathan's cardiologist is going to review the echo after he comes back from vacation to be sure everyone is on the same page. The doctor did reassure us that everything looks great. Her heart looks and functions normally.

More good news....they did an extensive test on Nathan's bone marrow and saw that he is completely cancer free!! They did what is called a cytogenetic test and a FISH test. These tests are high tech and can detect cancer cells that aren't apparent to the naked eye under the microscope. They both came back 100egative. Nathan has never had both tests come out negative in the year he's had leukemia. Usually there was always a percentage of cells positive for leukemia. Despite this, we still have to press on with transplant to ensure that this monster never comes back.

Also, his chest CT scan showed improvement in his lungs. They still look to have a little fluid in them but certainly showed a vast improvement. It won't hold up transplant. That was good news. I was really worried about his lungs.

So, all in all, a really good day! I would have liked to hear that her heart was 100nstead of being left in a little bit of a gray area but that's okay. We'll know more come September. She told us not to worry about it as all of the major structures of the heart looked fine. She also said that this is early on into the pregnancy and her heart is very tiny. Things could change as she grows. I am now 19 weeks along. So hopefully everything is fine.

I failed to mention that her name will be Julia Ivy Wright. Ivy is after Chuck's grandmother on his mom's side. We've always loved the name Julia. Nathan would have been Julia if he were a girl. We didn't know one Julia just one year ago but now we know many. That's okay. It's a really pretty name.

That's it for now. Nathan is ready for dinner so I must get going. Take care and thanks for checking in on us.

All of our love,

Chuck, Becky, Nathan, and Little Julia :)

*****Nathan is being admitted this Friday to start conditioning for transplant. He will have two days of cytoxan followed by four days of total body irradiation twice a day. Please pray for Nathan as this is the last huge hurdle he has to get over.*********

Wednesday, June 25, 2003 2:49 PM EST

Hello Friends and Family,

Well. It has been a rough couple of days. Nathan woke up Sunday morning at 5 am with a fever of 103.6. He was miserable. He had severe vomiting the whole ride down to Boston. We brought him to the Children's hospital ER immediately. Around ten minutes after our arrival, Nathan went into septic shock. Septic shock is when your body goes into shock from an infection of some kind. He turned grayish blue and his blood pressure dropped really low. They had to put him on a drug called dopamine to regulate his blood pressure. It all happened so fast. He fell asleep in Chuck's arms and then started to shake really bad. The nurse came in and grabbed him away to a nearby treatment room. Within a couple of minutes he looked the worst I've ever seen him look. It looked like a scene from the show ER. There were over ten doctors and nurses swarmed around him trying to stabilize him. It's the most scared Chuck and I have ever been. He thankfully turned the corner within twenty minutes or so. They kept him on the dopamine for six hours after it began. That incident warranted an overnight stay in the intensive care unit. I was so scared to go there as we have never needed to. We found out before going to the ICU that Nathan had a whopping 20 white blood cells. That is part of why he got so sick.

Nathan grew out two organisms in his blood in less than five hours which means that this a bad infection. They think that some bacteria from his intestines leaked out into his blood stream. Usually your white blood cells help to prevent that from happening.

The good news is that he responded very quickly to the antibiotics. He hasn't had a fever in almost two days. I think we caught it really early. Dr. Silverman, one of his attending doctors, came to the ICU to see him and was impressed to see how well he looked despite the morning we had. He came up just a few hours after the incident. He is a trooper.

We're just happy he is stable. He looks great. He is eating well and playing a lot. In fact, he doesn't want to sleep! He thinks it is great fun to be here. Silly little man.

We're just waiting for his counts to recover so that we can go home on antibiotics. Hopefully we'll be home in two days or so. He counts are starting to recover. His white count was 300 today. Better than the twenty he came in with.

Take care and thanks for checking in. I will keep you posted on his progress.

Our love to you all,

Chuck, Becky, and Nathan

****I just talked to Nathan's doctor and she said that they have his bone marrow donor ready to go. She doesn't know many specifics yet. She told me this person is a perfect match. Nathan will begin conditioning for transplant in three weeks and receive his new stem cells in four weeks. Conditioning is high dose chemo and total body irradiation. This will literally wipe out his bone marrow. That's the objective as it will also eradicate the residual leukemia as well. This is all good news. The closer we get to a cure, the better.***************

Thursday, June 12, 2003 12:35am EST

Hello everyone,

We received spectacular news today. Nathan is in remission!!! We are so grateful. We have been home since Monday but will be readmitted tomorrow for 6 days of chemo. Hopefully this is the last round until transplant. We are hoping transplant will be underway within the next month or so. He will then be in the hospital for about six weeks for transplant.

His paraflu culture also came back negative today too which was wonderful news. He is finally rid of that. He is feeling much better.

That's all for now. I just wanted to share that bit of good news with all of you. We can't thank all of you enough for your prayers recently. They have been answered and we feel blessed. Thank you.

All of our love to all,

Chuck, Becky, and Nathan

Monday, June 2, 2003 1:33am EST

Hello friends and family,

I apologize for not posting sooner. It has been really hectic as Nathan has been very sick. I posted an extensive update on his "sister" site. You can get to it by clicking on the link at the bottom of the page. It will ask you to enter his carepage name which is NathanHunterWright for those who have not yet visited it. If you have any difficulty with it, send me an email which is also listed on this page and I will send you an invitation.

I will give you a brief summary. Nathan tested positive for a virus called paraflu. It is a cold in adults but can be more serious with babies and children. It is extremely dangerous for those like Nathan who have no immune system. Nathan's white blood cell count has yet to recover. It could take upwards to another week before we see any results. This is typical due to the amount of chemo he received. It is very scary though because he is at high risk for infection. Pafaflu also makes him very susceptible to pneomonia. They are watching him very closely for that as he has had several chest x-rays over the last week. So far, so good in that regard.

Nathan amazingly turned the corner these past couple of days. On Friday, he was in the worst shape I have ever seen him in. They had to put oxygen tubes in his nose as he lacked oxygen due to the horrible cough he has. He couldn't even really open his eyes that day. He was in a tremendous amount of pain which warranted an increase in his continuous morphine dose. He also spiked fevers all day. He spiked as high as 103.6. We had to pack him in ice as tylenol just wasn't doing the trick.

By Saturday morning, he looked and sounded so much better. He was holding a good, stable oxygen level for the first time in three days. They even took the oxygen tubes out of his nose late Friday night as he became more stable. He was thrilled with that. He hated those tubes more than anything. The nurses even had to restrain his arms because he wouldn't leave the tubes alone. I felt so bad for him. I took the restraints off after a short amount of time and tried to distract him. He's gone through too much. He is such a tough little guy. He fights like you wouldn't believe. I have faith that he is going to be a miracle and make it out of all of this alive due to his amazing amount of will to live. The doctors couldn't believe how quickly he turned around. There is something in that little guy.

I am also happy to report that he has not had a fever in over 36 hours. He is on the road to recovery. Thank God.

I will post more frequently as I now have a lap tap at his bedside.

Thank you for checking in on us. We appreciate your thoughts and prayers as always.

Much love to all,

Chuck, Becky, and Nathan

Monday, May 26, 2003 3:18 PM CDT

Good day everyone,

Nathan is still hanging in there. They started him on continuous morphine today because he has sores in his mouth that run through his GI tract. It is chemo induced. Your digestive tract has rapidly dividing cells similar to cancer so they get destroyed after heavy duty chemo. It is very painful. He also had a fever of 101.6 today so they started him on vancomycin along with the ceftaz he has been getting. They withdrew blood for cultures to see if there is an infection brewing in his blood. We'll have to wait about three days to make sure infection doesn't grow out. Only having 100 white blood cells isn't helping either. That can make you have an unexplained fever sometimes. A normal white blood cell count is between 5,000-10,000. So there is a lot of pressure on those 100 to perform if necessary.

Nathan is still energetic despite it all and is having fun playing with toys. He is still not eating very well. He likes icecream and applesauce still. It is soothing on his poor little mouth and throat.

We will be meeting with bone marrow transplant doctors this Thursday to hear what they have to say. We are still praying and praying that this round put Nathan back into remission so that we can press on. I have a feeling he will do well with transplant. He is very strong. We just have to decide between staying here or going to Duke University. The doctors, Chuck, and myself will figure out the best game plan for Nathan. We will go where his best chances are.

That's all for now. We welcome visitors and would love to see everyone. Thanks again for checking in and continuing to pray. It really helps us get through it all.

All our love,

Chuck, Becky, and Nate

Tuesday, May 20, 2003 6:16 PM CDT

Hello to everyone who visits just this site or both of Nathan's. Here is an update.

I called the director of the cord blood/stem cell transplant program yesterday at Duke University. Her name is Dr. Kurtzberg. She has pioneered with cord blood transplants and has been very successful. We had a really nice talk. The cure rate right now for babies with what Nathan has is 80%. That as an astonishing number. Nathan had a 40% chance from diagnosis. This lifted my spirits. I know we have many obstacles ahead of us to attain this goal but we can do it. Nathan as we all know is a very fiesty, strong boy who doesn't give up easily. I don't know if that 80% includes all or some relapses pre-transplant. I am going to call her tomorrow to ask her that. Chuck and I are also meeting with the transplant doctors from Children's to get their perspective. We have to have open minds at this point. I have to remember I am only a "mommy medic" and not a medical doctor. Sometimes I get caught up in it because I'm around it all the time and I'm a sponge for all of the info. If we decide to go to Duke, we would move down there for six months and rent an apartment.

They also did a preliminary search of the Bone Marrow Registry and came up with 86 potential matches! We are thrilled with this good news. We will find out in the coming days if these are cord blood and bone marrow matches combined.

Nathan is tolerating chemo incredibly well and is proving to be a little miracle boy. He is eating up a storm and enjoying his visit here. He loves the other kids here and plays with them like he's their age. It's really cute.

Nathan is receiving Idarubicin and high dose Ara-C for six days. He has only one more dose left! Time flies. He has not shown any signs of nausea. Thank God. He also still has all of his hair for now.

We had a great day today. They have a big tub here on the floor that has jets and it's really big. Nathan had a huge Elmo-berry bubble bath today. He loved it. He was lost under the bubbles. He didn't want to come out. That is our every other day ritual. He looks forward to it.

That's all for now. Thanks for checking in and don't forget to sign the guestbook so I know you stopped by.

Love to all and thank you for all of your support and prayers.

Our love and gratitude,

Chuck, Becky, and Nathan

Sunday, May 18, 2003 2:31 PM CDT

Well, where do I begin. I apologize for not posting sooner. Things have been absolutely crazy. Nathan had been doing great. He had been full of energy and eating great. We finally felt like we had entered the "safe zone" with Nathan's leukemia and treatment. We were ten months into treatment. He had a routine bone marrow done on Tuesday May 6th. The doctors looked at the bone marrow biopsy under the microscope and felt everything looked good. His marrow looked healthy. There were some different looking cells but noone was alarmed. The biopsy was then sent to a cytogenetic lab. They were looking for the translocation of chromosomes involved with his leukemia. It took one week to get the test back. On Wednesday, May 14th, we got news that turned our world upside down. Nathan's doctor, Elly, called and said the news was not what they had hoped for. Nathan relapsed with a very poor prognosis.

We got admitted into Children's Hospital on Friday May 16th. They did another bone marrow biopsy which showed the disease had not progressed further than what it was ten days earlier. That is good news. He had 8% blasts (leukemia) in his marrow.

We spoke with doctors on May 15th which is one of the hardest things Chuck and I have had to sit through. It's a talk that is every parents worst nightmare. We were told his odds are slim to none. His odds went from 50% to almost nothing in the span of no time. It's so frustrating. I wish they could cure him so we wouldn't have to be put through hell. Poor Nathan will be put through hell. It is grossly unfair.

He is now receiving six days of heavy duty chemo. He is receiving high dose ara-c and idarubicin. They should put him back in remission. His chances of going back into remission are 20-50%. We are hopeful these drugs will work. We can only pray and give this to God. We will know within a month if he is back in remission. If God willing, he is in remission, we would go to bone marrow transplant. We are also researching Duke University's cord blood transplant program. They have a 60% success rate with this. So we have cards to play which is the good news with all of this. There is also an experimental drug called the FLT 3 inhibitor. It is supposed to work well with Nathan's form of leukemia. It is brand new and has never been given to a child before. Nathan would most likely be the first. We would only resort to this drug if Nathan doesn't go into remission from the chemo agents he is currently taking.

That's all for now. I apologize for not updating sooner. I've barely been able to form thoughts in my head. I try not to think too much about all of this. It's too scary.

Take care and feel free to call us. You can reach me at 603-315-7440. We will be in the hospital for at least a month.

Take care and thank you everyone for all of your prayers and support. It has helped us greatly.

Love,

Chuck, Becky, and Nathan

Monday, April 21, 2003 11:58 PM EST

Hello everyone,

I posted on Nate's other site but forgot to mention our fun day today. For those who haven't looked at the other site, Nathan had a great Easter but was in the ER with a fever due to an ear infection until 4 o'clock this morning. He's on antibiotics and doing much better already.

Nathan spent the afternoon with his cousin Eben today. We brought them to the park. Nathan hung out at the swings while Eben played on the slides. Eben was flying down the slides. His uncle Chuck could hardly keep up. It's a big playground with lots to do. Eben climbed through tunnels and had so much fun. Nathan just likes to sit and watch. He liked relaxing in his swing. I went down the slide with Nate a few times. He thought that was pretty neat. It was such a beautiful day. We really enjoyed the fresh air and sleepy kids as we left the park! :) Fred and Clarissa, Eben's parents, said that Eben crashed in the car on the ride home and was in bed early tonight. Nathan fell asleep early too.

We have to go to clinic tomorrow for chemo so I will let you know how we make out. Hopefully the weather stays nice. I love spring!

Love to all,

Chuck, Becky, and Nathan

Wednesday, April 16, 2003 12:00 AM EST

Hello friends and family,

I posted a long winded message on Nathan's other site if you want to check it out or you may have already. There is a link to it on the bottom of this page.

Today was a good day. Nathan received his weekly methotrexate push today. His counts were great. He got a nice bump from the blood transfusion on Sunday. He was full of energy today as his cold is going away and he is no longer anemic.

The weather was beautiful and we took full advantage of it. We went to the park with his friends Dylan and Carisa. The three of them were so good. Dylan is almost three and Carisa is almost nine months old. Nathan loved swinging in the baby swing. He wasn't a big fan of the slide though. He got scared. He's a little young for it. It was nice to get fresh air and enjoy the day. He fell right asleep as we left the park. He was pretty tuckered out. All that fresh air did him good.

That's all for now.

Take care and have a good rest of the week!

All our love,

Chuck, Becky, and Nathan

Saturday, April 5, 2003 10:29 PM CST

Hello everyone,

Nathan is doing great. He has been playing and full of energy. He wants to walk in the worst way. Early intervention is coming on Monday. I think it will be interesting and helpful.

He is supposed to get chemo on Tuesday at the clinic. Hopefully the trek down there won't be too terrible as the weather isn't supposed to be the greatest. Fun, fun. Never a dull moment.

We are looking forward to Easter and warm weather as I think we all are. I can't believe it's snowing in April! Last Easter, it was warm and nice out. Chuck's little cousins were running around his parents house with short sleeves on. Easter was on March 30th last year. So we are behind the eight ball this year.

That's all for now. Thanks for checking out the site and leaving messages. Chuck and I love reading them. This site is fun for us as it offers more options.

Much love to all,

Chuck, Becky, and Nathan XO

P.S. God bless our troops and give them strength to allow for their safe return. They are all in our thoughts and prayers.

Wednesday, April 2, 2003 12:53 AM CST

Here is a synopsis of how it all began with Nathan for those who are not aware:

Nathan was diagnosed on July 19, 2002 with infantile acute lymphoblastic leukemia. He has a break in the MLL gene on chromosome 11q23. (t:4,11) He was also born with Shone's syndrome as well as Wolfe Parkinson White Syndrome. (Clinical names for his heart anomolies.)

We spent seven and a half weeks in the hospital for the first round of chemo along with complications. (We went on to spend almost three months total in the hospital.) He cruised through the first round of chemo which is referred to as induction on Protocol #99-137 through the Dana Farber Cancer Institute in Boston. He got an infection in late August 2002 in his central line. He became deathly ill with a staph aeureus infection in his blood. This was his second line he had gotten. The most serious complication with this infection was that he had been without any white blood cells for two weeks. He was close to going into septic shock from the infection and was about to be taken to intensive care when he turned the corner and got better. He was in an extensive amount of pain and remained on continuous morphine for over two weeks. He is a trooper and pulled through. That is an example of how tough this little guy is. He has done amazingly well and we are all very proud. It is testament to his amount of courage and strong will.

The first sign of leukemia with Nathan was bruising. He had little pinpoint purple spots on his body. He only had a few of them. His white count at diagnosis was 42,000 with 72% blasts in his peripheral blood. His marrow was packed with 95% blasts. His platelets were 163,000 which is good. His hematacrit was 26. He looked very pale.

Nathan is in first remission. He was deemed to be in clinical remission at the end of induction. He went on to the consolidation phase of treatment after induction and got very sick again. He got a fungal infection in his liver and was on ambisome (antifungal) via IV for 6 weeks. We spent a couple of months in and out of the hospital for that phase. He had horrible fevers for a week. He had a 103 degree temp. that whole week with no white blood cells. Tylenol barely touched it. He even slept for 24 hours straight a couple of those days. He was on five antibiotics that weren't helping. He turned blue twice and gave us the biggest scare. He didn't eat for a week. Thankfully, he has not required any kind of nutrional intervention ie: feeding tube or TPN. That was the worst phase of treatment by far. We have pretty much smooth sailed ever since.

The good news is that I guess the third time is a charm. This central line has been okay. Only one Staph-epi infection that was treated with antibiotics in December. He has had the same central venous line since September 2002. He is now trying to pull it out as he knows it's there. He is a hand full sometimes but we welcome the stubborness as we truly believe it has helped him fight this.

We are now 8 1/2 months into treatment and he is doing great. He is happy and acts like a healthy one year old. We are blessed and very grateful with how well he has done.

Take care!

Love,

Chuck, Becky, and Nathan

Saturday, March 29, 2003 9:08 AM CST

Hello everyone! Thanks for checking out the new site. As you may have noticed, I have updated the site with pictures and new music! I love changing things around. It keeps me occupied.

Nathan is doing really well. He's just eating cheerios right now and watching his favorite, Elmo.

This past Monday, Chuck and I brought Nathan and his cousin Eben to the Boston Aquariam. We had a great time. We saw seals, penguins, and lots of fish. The boys were in awe with the all of the creatures. Eben is twenty months old and a bundle of energy. Eben even learned to say seal! He's adorable and Nathan really gets a kick out of his big cous!

That's all for now. Happy Spring!

Love,

Chuck, Becky, and Nathan XO

Thursday, March 27, 2003 11:25 AM CST

Welcome to the new site. I will keep his other one going as well. This site is easier to access than the one through Boston Children's Hospital. Many people have been looking for a website for him. His other site requires an invitation or it is not accessible. Thanks!

Thursday, March 27, 2003 8:53 AM CST

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----