Children of the Promise ~Nathan H.

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Nathan H.

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UPDATE: 2-2-07

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

UPDATE: 1-19-07

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 .

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

UPDATE: 9-22-06

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.

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

UPDATE: 8-11-06

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.

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

UPDATE: 3-17-06

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!

Becky, Chuck, Nathan and Julia

UPDATE: 2-10-06

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

UPDATE: 1-6-06

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

UPDATE: 11-11-05

Delayed Posting:

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

UPDATE: 6-25-05

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.

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

ADDED: 12-02-04

Welcome to Nathan Hunter Wright's website. Nathan was born on January 30, 2002 pink and seemingly healthy. He went into congestive heart failure on his ninth day of life. Much to our shock and dismay, we learned that our beautiful newborn son had a coarctation of the aorta, VSD (hole in the septal wall), a bicuspid aortic valve, and a mildy stenotic mitral valve. He was put on cardiac meds to counteract the CHF. Nathan thrived and acted like a normal healthy baby until we got the news that will forever change our lives. Nathan was diagnosed with Infantile Acute Lymphoblastic Leukemia at 5 1/2 months of age. Date of diagnosis: July 19, 2002. An early relapse was detected on May 14, 2003. Nathan underwent an unrelated bone marrow transplant with his donor matching him 12 out of 12 on August 8, 2003. Nate has far surpassed the odds thus far and we ask that you pray for his continued progress so that he may stay cancer free forever.