Friday, January 31, 2003 at 09:04 PM (CST)

While sitting at my computer this morning, I realized that Van and I are literally hours away from another "first". With having the kind of year that we did last year, “first’s” seem to come so quickly. I thought that “first’s” were supposed to be happy times and not sad. Tomorrow is my and Van’s “first” anniversary without Noelle and Nicholas here with us. With surviving each day and the challenges it brings, I wonder how in the world I am supposed to be “happy” and celebrate when deep down inside, all I really want to do is sit, cry and wonder how such tragedy could happen to one family.

I couldn't get very far with my pity-party until a thought crossed my mind. I remembered how much Noelle loved to have parties. She would look for any reason to celebrate. If Noelle could make up a reason to have a party, we would have a party. So, tomorrow Van and I will celebrate… but in a new way. We are realizing that though it is difficult to go on with life as “usual”… we can change “usual” into “unique” and find a new way to make this very special “first” as meaningful as we can.

I wondered how I could include Noelle and Nicholas in our “happy” day. My hurt is so deep and at times that putting my pain into words just seems impossible. While thoughts and memories were still heavy on my heart, I came to the computer early this afternoon and wrote a letter to Noelle and Nicholas. It felt kind of strange, but I tried to visualize them away for a while; kind of like at camp, or closer... maybe like in another room of the house. (In actual reality they really are only away for a while… but it seems like forever right now). I remembered that I always write Nathan when he is at camp and so I just started typing away. I realized that through that letter I was able to express some of my pain but even more of my love.

I made sure to make each letter personal. I wrote as if Noelle and Nicholas were just in the next room. When Van came home from work today, I told him what I had done. I kind of expected him to tell me that I was kind of “strange.” But he didn’t. In fact, Van told me that he would like to write them a letter as well. So, for our anniversary we are going to put our letters in a helium filled balloon and send them up and away. We have no idea who will receive those letters. We know for sure that whoever does receive our letters, they are will certainly “feel” our love.

After we send our balloons up and away, we are going to get an ice cream cake. Noelle always loved ice cream cakes. We used to order one every year for Van's birthday. We all looked forward to it. But this year, we just could not get and ice cream cake for Van's birthday. Maybe we can make our new anniversary tradition an "ice cream cake" celebration. Who knows... we'll just take it one day and one "first" at a time.

I still wake up each morning thinking that if I say or do the “right” thing, then Noelle and Nicholas will magically appear. Oh, how I miss playing in make-up with Noelle. I just yearn to have one more opportunity to read to both Noelle and Nicholas… or get one more hug…or just hold them in my arms and squeeze them ever so tightly… never to let them go. But I realize that no matter how many “right” things I say or do, it is not going to bring them back. So, I will continue to pray for them... and remember them... and love them.

As time goes on, finding the good in tragedy is more of a daily struggle. But as hard as it gets, God continues to pull us through so much hurt and sadness. There are times when our grief seems worse than it has every been before. We are so fortunate to have such a large support group. Thank you all for being there for us and encouraging us the way you do.

I went to our first “group” grief session this week. I have been very cautious about group sessions because of the “fear of the unknown.” I was quite pleased and do plan to return again next month. We will meet for five sessions, one time each month. We were told that we do not have to commit to going each month. It is a “come as you desire” group. Van said that he plans to attend next month. Van and I have finished with our individual grief sessions. Nathan started back this week. I was very concerned with the stomach problems that he was having. I thought that maybe he was beginning to internalize his grief. Nathan’s counselor said that he is doing very well processing his grief and that he needs to schedule his own appointments with her from now on. The plan is to let Nathan have complete control over this part of his life, and in the mean time this should tell us how much longer “Nathan” feels that he needs to go. (Of course, she did tell Nathan that if he began to grow facial hair and was still scheduling appointments, then they might need to talk about it!)

Thank you for praying for Nathan and his stomach problems. We still have no definite medical reason as to the exact cause of his problem, but are highly suspicious that the grief is causing some of this. We will keep you updated.

Thank you again for keeping up with us. Please take a moment to remember someone in prayer today who is grieving the loss of a child, or who has a child that is battling a an illness of any magnitude.

Love in Him,

Wendy, Van, Nathan, Noelle and little Nicholas

Friday, January 31, 2003 at 09:04 PM (CST)

While sitting at my computer this morning, I realized that Van and I are literally hours away from another "first". With having the kind of year that we did last year, “first’s” seem to come so quickly. I thought that “first’s” were supposed to be happy times and not sad. Tomorrow is my and Van’s “first” anniversary without Noelle and Nicholas here with us. With surviving each day and the challenges it brings, I wonder how in the world I am supposed to be “happy” and celebrate when deep down inside, all I really want to do is sit, cry and wonder how such tragedy could happen to one family.

I couldn't get very far with my pity-party until a thought crossed my mind. I remembered how much Noelle loved to have parties. She would look for any reason to celebrate. If Noelle could make up a reason to have a party, we would have a party. So, tomorrow Van and I will celebrate… but in a new way. We are realizing that though it is difficult to go on with life as “usual”… we can change “usual” into “unique” and find a new way to make this very special “first” as meaningful as we can.

I wondered how I could include Noelle and Nicholas in our “happy” day. My hurt is so deep and at times that putting my pain into words just seems impossible. While thoughts and memories were still heavy on my heart, I came to the computer early this afternoon and wrote a letter to Noelle and Nicholas. It felt kind of strange, but I tried to visualize them away for a while; kind of like at camp, or closer... maybe like in another room of the house. (In actual reality they really are only away for a while… but it seems like forever right now). I remembered that I always write Nathan when he is at camp and so I just started typing away. I realized that through that letter I was able to express my some of my pain but even more of my love.

I made sure to make each letter personal. I wrote as if Noelle and Nicholas were just in the next room. When Van came home from work today, I told him what I had done. I kind of expected him to tell me that I was kind of “strange.” But he didn’t. In fact, Van told me that he would like to write them a letter as well. So, for our anniversary we are going to put our letters in a helium filled balloon and send them up and away. We have no idea who will receive those letters. We know for sure that whoever does receive our letters, they are will certainly “feel” our love.

After we send our balloons up and away, we are going to get an ice cream cake. Noelle always loved ice cream cakes. We used to order one every year for Van's birthday. We all looked forward to it. But this year, we just could not get and ice cream cake for Van's birthday. Maybe we can make our new anniversary tradition an "ice cream cake" celebration. Who knows... we'll just take it one day and one "first" at a time.

I still wake up each morning thinking that if I say or do the “right” thing, then Noelle and Nicholas will magically appear. Oh, how I miss playing in make-up with Noelle. I just yearn to have one more opportunity to read to both Noelle and Nicholas… or get one more hug…or just hold them in my arms and squeeze them ever so tightly… never to let them go. But I realize that no matter how many “right” things I say or do, it is not going to bring them back. So, I will continue to pray for them... and remember them... and love them.

As time goes on, finding the good in tragedy is more of a daily struggle. But as hard as it gets, God continues to pull us through so much hurt and sadness. There are times when our grief seems worse than it has every been before. We are so fortunate to have such a large support group. Thank you all for being there for us and encouraging us the way you do.

I went to our first “group” grief session this week. I have been very cautious about group sessions because of the “fear of the unknown.” I was quite pleased and do plan to return again next month. We will meet for five sessions, one time each month. We were told that we do not have to commit to going each month. It is a “come as you desire” group. Van said that he plans to attend next month. Van and I have finished with our individual grief sessions. Nathan started back this week. I was very concerned with the stomach problems that he was having. I thought that maybe he was beginning to internalize his grief. Nathan’s counselor said that he is doing very well processing his grief and that he needs to schedule his own appointments with her from now on. The plan is to let Nathan have complete control over this part of his life, and in the mean time this should tell us how much longer “Nathan” feels that he needs to go. (Of course, she did tell Nathan that if he began to grow facial hair and was still scheduling appointments, then they might need to talk about it!)

Thank you for praying for Nathan and his stomach problems. We still have no definite medical reason as to the exact cause of his problem, but are highly suspicious that the grief is causing some of this. We will keep you updated.

Thank you again for keeping up with us. Please take a moment to remember someone in prayer today who is grieving the loss of a child, or who has a child that is battling a an illness of any magnitude.

Love in Him,

Wendy, Van, Nathan, Noelle and little Nicholas

Tuesday, January 28, 2003 at 08:34 PM (CST)

Van and I have been watching the State of the Union Address as President Bush speaks this evening. I think I have heard enough for tonight. Being a parent going through the grieving process and hearing some of what was said, was not right for me at this point and time.

I can appreciate the many things that Mr. Bush is trying to achieve and love to hear his high expectations for our country, but I guess I did not hear some things that I maybe had hoped to hear. I would have loved to hear Mr. Bush say that he wanted to find a cause as to why so many children here in America are getting more and more incurable illnesses. Or, I would have loved to have heard that funding would be available to doctors to make a new more "user friendly" medications for patients while cures are being found for illnesses. Of course, those are just a couple of things that "I" would have love to hear. I know that Mr. Bush has a much broader picture in mind and I am thakful for his willingness to serve our country in the way that he does.

I do have a specific prayer request. While Noelle and Nicholas were sick, Nathan started having problems with upset stomach. (And rightfully so.) After Noelle and Nicholas passed, Nathan had increased problems with his stomach, but then he seemed to feel better with the use of medications. Lately, Nathan has been complaining of severe pain in his lower abdomen and more episodes of upset stomach continue. I took Nathan back to the doctor yesterday and was told that he may have an ulcer or irritable bowel syndrome. His nurse practicioner told me that sometimes kids internalize their pain and grief and that keeps their insides upset. Nathan did have bloodwork done yesterday, which came back perfectly normal today. We are now deciding the next path to take. Please pray that Van and I will remain as calm about this as we can. And pray that whatever is going on with Nathan is something that he can get complete relief from.

I would also like to ask you to pray for the many leaders of our country. Please pray that they will prayerfully consider each and every decision that they make on behalf of all Americans. Our leaders do have a very difficult job and serve each of us in such a big way.

Please pray for all three of us as we continue to grieve the loss of Nicholas and Noelle. And pray for the many other parents who have also experienced a similar loss or who's child is in the treatment or healing process.

And as we end every prayer-we pray, "Please God, give Nicholas and Noelle and extra hug and kiss for us, and let them know how much we love and miss them."

Thank you all for continuing to check in on us. We do appreciate all of you.

Joe, thank you so much for making Noelle and Nicholas' site look so nice. I know that Noelle is looking down and smiling so big at those dancing butterflies! Thank you agian.


Wendy, Van, Nathan, Noelle and little Nicholas

Sunday, January 26, 2003 at 02:41 PM(CDT)

There are so many pivotal dates in Noelle and Nicholas’ medical treatment that Van, Nathan and I will always remember. The upcoming months will bring some of the most painful memories. It was almost a year ago that Nicholas had surgery to repair a prior surgery that had been done wrong at a hospital about an hour and a half from us. The error was not discovered until nearly two months after the actual surgery date, two months of pain and suffering. Now that the error was found, we were told that we needed to wait two weeks to see if Nicholas would heal on his own.

Nicholas was so sick and watching him suffer the way he did was so heart wrenching. The night prior to the repair surgery, Nicholas was getting sicker and sicker. I remember calling the resident to our room several times. I kept telling him how much Nicholas was hurting and that we needed to stop pumping his stomach full of medication. (The goal was to try to rid his intestines of everything in there to prevent any stool from leaking out during the surgery – thereby causing more problems.) After calling the resided to our room for a third time during the night, I told the resident that Nicholas needed more pain medication and that if he wasn’t willing to do it, then just call the attending at home. The look on that resident’s face showed that there was no way he was going to call the attending at home. After leaving the room for a while, he did increase Nicholas’ pain medication and he did stop the other medication from pumping into his stomach. (I still wonder what year that resident was).

What a long night that was. Nicholas’ big sister, Noelle, received permission from the hospital staff to spend the night with her little brother in the hospital that night. There was no way she was going to leave him being that sick. Noelle attempted to take care of him throughout the night… scooting a chair up to the crib, stepping up on it and making sure Nicholas had not taken off his gown or constantly wiping his forehead with a cool wet washcloth. Neither Noelle, Nicholas nor I got much sleep that night, but we were together and we prayed fervently. I told Nicholas’ surgeon the next morning what had happened to previous night and I also told him that we would be praying for not only Nicholas during this surgery, but we would be praying for him as well.

Nicholas continued to get worse as we waited to take him to surgery the morning after that horrific night. Nicholas spiked a fever of 104 degrees. It was very obvious that his body and intestines were filled with foreign substance that needed to be cleaned up. His stomach was so swollen… something needed to be done fast. On the way to the holding room for surgery, Nicholas kept looking at Van and me with a look that I will never (ever) forget. It was a look that said, “Mommy, please help me.” The look was so desperate for help. And I could do nothing but try to comfort him as I watched him try to hold on while gasping for air. We didn’t get very far down the hall before Nicholas’ sat’s began to drop very quickly. Thankfully, the nurse taking Nicholas down to the holding room asked a nurse from the step-down unit to escort us to the holding room. Nicholas’ nurse had Nicholas as a patient before and she had not seen him act this way. (Thank goodness she had intuition that worked). Little did we know, that on the way to the holding room Nicholas would need that nurse from the step down unit to bag him all the way… he was not breathing well enough to stay alive.

We got Nicholas to the holding room and it seemed that people were everywhere, just standing around and watching. I just wanted to scream out, “If you are not going to help, then get on with your work.” I knew that if I started spazzing out, then I might be asked to leave, so calm I was… quiet with tears falling. Hurting so terribly and I could not even hold my baby to give him the much needed love and affection that we both needed. I was losing my “little man” to something that could have been avoided, and I could do nothing to help him… nothing except pray… so pray I did.

The intensivest arrived and asked me and Van to leave the room so he could emergently intubate Nicholas. Van and I left the room and within a matter of minutes the intensivest came to us and said that Nicholas was intubated and more stable. The repair surgery was now going to get under way.

There are so many events that I replay over and over again. I just cannot get them out of my head. I give everything over to God and ask Him to help me with those painful thoughts. Every minute of every day is filled with many kinds of thoughts. “What else could I have done?” “How could I have helped Nicholas?” “Why did I believe what the doctors told me?” “If only I would have known what other questions to ask.” "Why didn't I insist that the doctors in our hometown do the repair surgery immediately." "Why did I settle for their reasoning to wait?" "They should have known that Nicholas' liver was not well and he would have a hard time healing anything at this point, "Why didn't I push harder?" The pain lies so deep. Not one, but two children… “Why, just why?”

Each morning I awake and wonder what Noelle and Nicholas are doing up in heaven. I dreamt about Nicholas the other night. He was crawling and smiling so big! He still just has those same 6 teeth!

I am awaiting another dream of Noelle. I remember having one about her not too long ago, I was so excited when I woke up, I could not remember much about our time together.

Each morning I awake, I look at the wall where Nicholas’ crib was in our room… only to know that I am in reality and it is not there. When I walk down the stairs in the morning, the first thing I look for is his crib in the den. Boy, wouldn’t it be nice if he was downstairs? Well, guess what, he isn’t. The next thing I look for is Noelle’s hospital bed… and you guessed… not there either. So, I listen for a bird to sing or look out the front window for a butterfly and I usually get lucky. For me, that is what I need. I hear a bird sing and remember how Noelle and I used to look out our front window and listen to the birds sing. Then, we would read her Bible books and she would just cry and cry about her “Turtle”. Well, Noelle… no more tears, no more tears.

God allowed Van and me to be a part of Noelle and Nicholas’ life; we are so thankful for that. Each day we are very thankful to our Lord for the many gifts we do have. And each day we cry our tears and share our sadness and know that the Lord will carry us on.

Friday, July 26, 2002 at 07:41 AM (CDT)

Thank you again to everyone who has supported us through this difficult time.

We will be posting one last update prior to closing out this web-page.

Van and I want to alert any of you who have received an e-mail from us in the past two days. Although we did not personally send the e-mail, a virus is being spread. We were told that if your address is bookmarked in our address book you would automatically receive this virus. We are in the process of contacting the person who forwards us mail to let him know that his mail is infecting ours and yours.

We hope that this situation will be corrected by the end of the day. Again, we apoloigize for any inconvenience we have caused. Please do not open any mail that comes from us in the next 24 hours. (If we do try to contact you, we will alert you that it is safe to open.)

Much Love,

Wendy and Van

Monday, July 22, 2002 at 02:40 PM (CDT)

Thank you all for all of your support and encouragement over the past days.

Funeral Arrangements for Noelle are as follows:

Visitation will be at Hayworth Miller Chapel on Silas Creek Parkway on Tuesday, July 23, 2002 from 7:00-9:00 pm.

The funeral service will be held at Calvary Baptist Church, corner of Country Club and Peace Haven Roads, on Wednesday, July 24, 2002 at 2:00pm.

Thank you for sharing in our time of grief.

Much Love,

Wendy, Van, Nathan, Noelle and little Nicholas

Sunday, July 21, 2002 at 09:27 AM (CDT)

What a journey. So many lessons learned and so many lives touched by such a sweet little spirit. Thank you Noelle for sharing so many wonderful memories with us. It was truly a blessing to have had the opportunity to be your parents. We will always love you more and more everyday to the moon and back. And as we always told you every day of your life, "Thank you Jesus for my Noelle."

After having two wonderful days in a row, Noelle continued to minister to so many with her faith, courage, will, and determination. Never complaining of anything other than a tummy ache, Noelle was obviously getting sicker yesterday. Her breathing was getting more and more labored and her eyes began to spasm.

Van and I called her doctor and he came over to see how Noelle was doing. We gave Noelle a bolus of steroids then a dose of Morphine and she responded very well.

We had some special friends come over last night, again, with Noelle's doctor here and we were able to share some special prayer time with Noelle.

Throughout the night, Noelle tried to say some words but she just did not have the energy. I tried to give Noelle a dose of her mediaction around 4:45 am and Noelle indicated by shaking her head that she did not want anymore medicine.

At 7:00 a.m. Van and I noticed that Noelle's breathing was again much different and her fingernail beds were turning blue so we put her oxygen on and called her doctor.

It was obvious that Noelle was actively ending her journey here on this earth. She displayed such courage and was so brave, never fighting her walk Home.

At 8:50am Noelle sighed such a beautiful breath of air, she was now taking the hand of her Maker and letting go of ours.

Noelle, thank you for allowing us to be a part of your walk Home. Thank you for the many lives you touched while you were here. Thank you for being such a precious part of our life. May your legacy live on forever.

A special thank you to the people who came to pray with us at such short notice last night. Thank you to Noelle's doctor for coming to our home to help with Noelle. You have been such a witness to us. Thank you for going above and beyond the call of duty. Thank you for coming to see Noelle make her way Home. And thank you to our church to the support and encouragement you have shown us. Thank you Frances for praying for Noelle as Jesus began to beckon for Noelle and thank you for staying to witness her Homegoing.

Noelle, like Nicholas went home on a Sunday. And Noelle has died on the 21st, as Nicholas was buried on the 21st. Noelle can now be with Nicholas and once again take care of him.

Funeral arrangements will follow soon.

We Love You All,

Wendy, Van, Nathan, Noelle and little Nicholas

Friday, July 19, 2002 at 07:06 PM (CDT)

Though Noelle continues to display different symptoms,we are so excited to share that Noelle has had a couple of great days in a row! What an answer to prayer!

We are able to understand Noelle a little better when she talks to us. She even seems to be able to project her voice a little more than last week. Noelle continues to lean to the right side at times, however this is not as evident as it once was.

Noelle still cannot use her right arm or foot and we continue to lift her with the Hoyer lift. This device has been such a tremendous help for not only us, but Noelle as well.

This week, Noelle has begun to use a computer that will assist her with her speech if she should lose the ability to talk. We can tell that once Noelle learns how to use the computer, she will really benefit from it.

Noelle was having a very hard time seeing out of her right eye and she could not turn her head to the right. She asked us to read to her on her right side several times this week!

We have not had to keep fans blowing on Noelle this week nearly as much as last week. Noelle's ability to maintain her body temperature seems to be much better. We are also excited to share that Noelle is completely back on solid foods this week! She had mostly been eating things such as applesauce, yogurt and milk shakes. Noelle's appetite is much better this week as compared to last week.

Noelle wanted to have her hair cut this week. She was able to sit up for the entire haricut whithout needing a break! (Thank you Cindy for making a trip to the house and for the beautiful balloons. Noelle said that Lauren's hair is very pretty and that Lauren is a pretty girl! Thank you for continuing to be there for us.)

On a couple of occasions this week I heard Noelle singing a song. Though I could not make out the words, Noelle said that it was a song that she learned in Preschool.

It was great to hear Noelle giggle this week. She actually teased me and our helper during diaper change time.

Noelle continues to ask to see her family and friends. She has had visitors for 13 days in a row! Van and I are tired, but Noelle continues to ask for more people! Thank you all for coming to see Noelle. As usual, we never know how much Noelle will talk while you are here, but she sure talks about you when you leave. (Mr. John and Mr. Steve, Noelle even talked about you both when you left. Noelle saw the lights on your motorcycles when she turned her head to the right! Thank you again for taking time to come.)

A special thank you to the wonderful people who came to read to Noelle this week. We have to keep all of the books that you left separate from ours, as Noelle reminds us that when you come back you will want to read those books again. And as always, many thanks and much love to Aunt Joy and Uncle Blaine for being there in so many ways for us during the good times and the not-so-good times. We love you both so much.

We continue to keep in close touch with Noelle's doctor and she remains at the higher dose of steroids. We are not certain how long Noelle will stay at this plateau.

We cannot begin to tell you all how happy we are that Noelle has had so much improvement over these past couple of days. We do realize that Noelle is still a very sick little girl. One thing is for sure, every moment of every day will always be deeply cherished.

Thank you all for your never ending support and prayers. Thank you for providing meals to us so we can continue to spend all the time that we can with our children. Thank you for your continued cards and phone calls. Thank you for walking with us on this mighty journey. We continue to give God ALL of the praise for each and every day with our children.

Thank you Dear Lord, for the miracles that we see every day of our lives, especially the big one this week!

We will continue to post updates!

We Love You All,

Wendy, Van, Nathan, Noelle and little Nicholas

Sunday, July 14, 2002 at 06:00 PM (CDT)

This week we had to increase Noelle's steroid dosage due to another onset of symptoms. We are now at the highest dose that we can go. Since the increase, Noelle appears to be stable and seems to be feeling ok.

Last week Noelle was having a very difficult time maintaining her body temperature with terrible bouts of feeling very hot. Now, Noelle is content with her body temperature.

The choking that Noelle was experiencing while eating also seems to be much better since the steroid increase.

Noelle has begun to fill up on food very quickly. Her appetite is not at all what it once was.

It is getting more and more difficult for us to understand what Noelle wants to say to us. We all are trying to be patient with one another. We are trying to get Noelle to use a computer that will talk for her. She still wants to do all on her own.

We have no idea how long Noelle can remain stable on the current dosage her her steroids. She could stay at this point for a while or she can develop another set of symptoms at any time. At this point, we are keeping in close touch with her doctors. We continue to get help with Noelle from Hospice.

The time that we spend with Noelle gets more and more special each day. We spent most of the weekend just reading. My favorite time is our snuggling and hugging time. I still love to hear Noelle giggle when we get silly.

We are so proud of Noelle's will and determination. Her faith in God is so profound that we remain in awe of her inner strength. It is so amazing to us that when the house gets quiet Noelle just begins to talk to us about her love of Jesus.

We want to thank the many visitors that Noelle had last week. She did enjoy each and every visit. She talked to us about all of you when you left. (Miss Amber still has the prettiest hair ever!)

I did learn last week that Noelle is still "in to" cool clothes as she told Ms. Ruth. And how Noelle can read, "in the day, in the night, and on Halloween", as she told her cousin Molly. And when Ms Gwen brought her famous strawberry dessert, we heard how much, "I (Noelle) just love this stuff". We never know when Noelle is going to talk to visitors and when she is going to get upset. Thank you all for being so patient with us. And thank you for coming to visit Noelle at her request.

Thank all of you for the special treats that you have brought to Noelle. She enjoyed her milkshakes, Frosty's, cards, and care packages. She loves the beautiful blue silk blanket that a special "angel" made for her.

Nathan is up in Roanoke with Aunt Joy and Uncle Blaine. We hear that he is having a blast and staying up late at night. We know that he is in great hands. Nathan is due to come home tomorrow.

Thank you all for your continued support and encouragement. We truly covet your prayers. It is such a blessing to read your messages in the guestbook and receive your cards. Thank you for continuing to walk by our side as we continue on God's journey.

We love all of you,

Wendy, Van, Nathan, Noelle and little Nicholas

Monday, July 08, 2002 at 02:16 PM (CDT)

Van and I nearly doubled Noelle's steroid dosage and it seems that she is feeling a little better. She continues to struggle with maintaining her body temperature; she is very hot one minute and then cold the next.

Noelle's speech seems somewhat better today. When talking, Noelle can get out anywhere between 2-3 syllables per breath. The Foley catheter seemed to cause Noelle a great deal of discomfort, so we removed it the day after it was put in.

Noelle still experiences back pain when we move her. Today we got a Hoyer lift to help with Noelles transfers. We also got an air matterss to help with her comfort.

Noelle continues to lean to her weaker side on occasion. She is sleeping more during the day than she had been.

Noelle's status seems to change on a daily basis. She has good days mixed with some not-so-good days. Noelle is stable right now, we have no idea as to when she may have another onset of symptoms.

Please continue to pray for Noelle and the rest of the family as we continue on this uncertain journey. Thank you for walking with us as we continue to grow with God.

We Love You All,

Wendy, Van, Nathan, Noelle and little Nicholas

Monday, July 08, 2002 at 02:16 PM (CDT)

Van and I nearly doubled Noelle's steroid dosage and it seems that she is feeling a little better. She continues to struggle with maintaining her body temperature; she is very hot one minute and then cold the next.

Noelle's speech seems somewhat better today. When talking, Noelle can get out anywhere between 2-3 syllables per breath. The Foley catheter seemed to cause Noelle a great deal of discomfort, so we removed it the day after it was put in.

Noelle still experiences back pain when we move her. Today we got a Hoyer lift to help with Noelles transfers. We also got an air matterss to help with her comfort.

Noelle continues to lean to her weaker side on occasion. She is sleeping more during the day than she had been.

Noelle's status seems to change on a daily basis. She has good days mixed with some not-so-good days. Noelle is stable right now, we have no idea as to when she may have another onset of symptoms.

Please continue to pray for Noelle and the rest of the family as we continue on this uncertain journey. Thank you for walking with us as we continue to grow with God.

We Love You All,

Wendy, Van, Nathan, Noelle and little Nicholas

Wednesday, July 03, 2002 at 09:04 PM (CDT)

We are excited to report that we have help with Noelle. After such a long process of trying to find the right person, we were fortunate enough to have her start today.

We are very saddened to report that Noelle's symptoms are getting worse. Talking is very difficult for Noelle at this point. Just getting any word out is difficult. She still tries to eat what she wants but realizes that she may be going to a completely soft diet soon. Choking is getting more and more prevalent.

There were a couple of different possibilities as to why Noelle is having so much back pain. Without proper testing the exact cause will not be known. The most likely cause is that Noelle has sustained a compression fracture of a vertebrae. We are trying to manage her pain with medication.

Noelle is having a very difficult time sitting up straight. Her head and body seem to lean to her weaker side.

Noelle elected to have a Foley catheter placed today. The catheter does seem to cause her some discomfort and the procedure was very tiring for her. She has mentioned to us that she is glad that she no longer has to get up to use the bedside commode.

We nearly doubled Noelle's steriods last night in an effort to minimize her symptoms. If we are going to see any improvement it will be within the next 48-72 hours. If we see no improvement, we can double the new dose of steroids for 48-72 additional hours or go back to the origional dose.

It is thought that Noelle's tumor is at the later stages. No one can say for sure how much longer Noelle will be with us, but things are much worse now. And as bad as her symptoms are, unfortunately, they are very likey to get even worse.

Noelle realizes that she is getting sicker. She continues to set such an example to all of us as she stands firm in her faith. She is still very fearful of the stages that she may have to go through until she meets her Heavenly Father, but she NEVER wavers on her spiritual beliefs.

Reading christian books continue to be Noelle's favorite thing to do. She does watch television at times, but her right eye is not focusing very well at this point. She loves to listen to music. She is spending more time resting.

Noelle's courage, faith, insight and wisdom continue to keep us in awe. When the house gets quiet with no visitors here, she shares so many of her personal feelings with us. Please pray for all of us. We cannot put into words exactly how we feel. We all have so many mixed emotions. Please pray that we will accept God's will, no matter what it may be. Please pray that we will be able to make good decisions for Noelle with clear minds. Please pray that we will always keep Noelle's wishes and best interest in mind. Please pray that Nathan will be able to identify his feelings so he can express himself.

Nathan is very aware of Noelle's changing health status. He continues to help out when and where needed. He does not leave the house much to play as he wants to be with his sister.

Thank you all once again for always being there for us. Thank you for your continued support, encouragement and prayers. Thank you for walking by our side while we are on such an uncertain journey.

We will continue to post updates as Noelle's condition changes.

We Love You All,

Wendy, Van, Nathan, Noelle, and little Nicholas

Sunday, June 30, 2002 at 08:39 PM (CDT)

Noelle continues to experience some of the same symptons as last week, but some of the more concerning ones have subsided. Her skin tears have completely healed. This is one symptom that Van and I were very concerned about. In fact, they had healed in just three days! This is a tremendous answer to prayer!

Noelle still experiences terrible upper back pain and has a very difficult time walking. Her mouth pain seems to have subsided. At this point, Noelle only asks for soft foods to eat.

It seems each week presents with some sort of new symptom that Noelle has to contend with. And week after week, no matter how big or small the symptom, Noelle continues to fight with such courage and faith.

Van and I are so grateful that we still see some glimpses of Noelle's old sense of humor. She will occasionally let out a "one-liner" that completely catches us off guard! For those of you who knew Noelle before she was diagnosed know how we have always treasured all of her "one-liners".

Noelle continues to minimize her world by only interacting with a few people. This is hard for us to see, though we are told this is part of the process she is going to experience.

Van and I want to thank those of you who call before you come to visit Noelle. We also want to thank you for understanding that she is not up to many visitors at this point. She is completely aware of your phone calls and desires to visit. And she is very appreciative of all of your prayers, as we all are.

It is very difficult for Noelle to write at this point. She is VERY thankful to everyone who continues to send cards and care packages.

Nathan finished up basketball camp this past Friday. He had a wonderful time learning from the "big guys" on campus. He spent quite a bit of the weekend showing off his new moves to Van. It won't be long until Van and Nathan will be playing each other at one-on-one with 100% effort.

Van and I want to thank every one who helped get Nathan back and forth to camp last week, especially for the help with the "last minute" issues that came up. The week would not have gone as well as it did without your help. We also want to thank you for continuing to call us to just check in. It really means a lot to us to know that you all are still standing by our side as we have been on this journey for such a long time now. Thank you all for continuing to loan your talents to our family in such amazing ways. And thank you for your never-ending prayers.

We Love You All,

Wendy, Van, Nathan, Noelle and little Nicholas

Monday, June 24, 2002 at 07:48 PM (CDT)

Noelle's care has been complexed by some new symptoms with her illness. Though Van and I are always fearful of what will happen next, Noelle continues to stand firm with her excellent attitude and with her faith in God. Noelle continues to show us on a daily basis what true courage and faith really are.

Noelle has begun to fall more and her gait is very unsteady. Just standing causes her right leg to turn blue. Her upper back causes her great pain upon any movement. Noelle's skin has begun to tear which is a big concern as she is now more at risk for infection. Noelle has also begun to experience extreme pain in her mouth and on her teeth. She is not able to eat a full meal without experiencing pain. Noelle continues to swallow with difficulty only at times. It is more difficult for Noelle to speak a full sentence without running out of breath. She continues to be completely mentally alert and aware of ther surroundings. Praise God!

It is so difficult for us to watch these new symptoms arise in such a short period of time. Having already watched one of our children experience such great pain and now watching another child experience such pain is simply heartbreaking. Wanting to do something yet feeling so helpless is unbearable.

Like Nicholas, no matter how badly Noelle is hurting, she always manages to find the energy to smile. Even though Noelle's symptoms have begun to progress in certain areas, we know that we are very lucky because things could be much worse.

Noelle praises God on a DAILY basis for the "energy" to get through another day. She prays on a daily basis that her mommy and daddy won't be so sad, she prays for her big brother to have fun, she prays that her little brother will get an extra hug for the day, and she prays for her dog not to miss her playing with him like she once did long ago.

God is still giving us quality time with Noelle. We get our supply of grace on a daily basis, and sometimes on an hourly basis. When we begin to feel terribly sad and even cry in front of Noelle, she reminds us of how God chose her to be sick. When I mention to her how sorry I am that she cannot get to her room to see her toys, she reminds me that I can bring what she needs to her. When I tell her how I have always dreamed of seeing her in a prom dress and watching her graduate high school and college, she reminds me that she only wanted to be a kid. So, when I get sad about where we are in this process of Noelle's health, she quickly tells me to be happy that she is still here and that I need to have fun with her. And usually at the end of our conversations, I hear, "Read mommy."

We continue to tell Noelle on a daily basis, as we have told her every day of her life, "Thank you Jesus for my Noelle." We are thanking Jesus for the many lessons that Noelle continues to teach us and for the extraordinary amount of knowledge and wisdom that she has been blessed with. We are so lucky that God continues to share His Noelle with us. We are so grateful that Noelle's light is still shining.

Nathan returned home from camp this Saturday. He had a lot of fun, as he usually does. This week he is at basketball day camp at Wake Forest showing off his dribbling skills. After that he will once again turn into a "preteen", as he call himself, and sleep in until midday.

Nathan is very aware of Noelle's changing health status and is taking an interest in helping us do the more complex care that she needs. Van and I love to hear any conversation that they have together, no matter what it is about. Nathan tries his best to keep Noelle comfortable when he can. Bringing her snacks, keeping her cool and reading to her are some of the more routine things he does for her.

Van and I will always covet all of your prayers for our family. We are very lucky that God has chosen us to be a part of our children's lives in such a special way. Though we do not like the challenges we endure and the pain we feel during the "sifting" process, we are blessed that He loves us enough to "refine" who we are, what we stand for, and the attitide we choose during such trying times.

We Love You All,

Wendy, Van, Nathan, Noelle and Little Nicholas

Tuesday, June 18, 2002 at 10:59 AM (CDT)

Though weak muscles are a part of everyday life, Noelle finished up last week very well. Her speach is ok and her ability to think clearly is wonderful. We do notice some occasions of difficulty swallowing, but we are so lucky that things are not much worse.

Noelle still has such a great outlook on life and her situation in general. We continue to be amazed at her optimistic attitude. She is so sound in her spiritual growth, it has to only come from God. Noelle continues to minister to us on a daily basis.

Van and Nathan returned home from their camping trip Friday afternoon. They both seemed to enjoy the time they had together and with the other cub scouts.

Just a few short hours after returning home on Friday, Van went to Atlanta for a "boys-weekend" of Atalanta Braves baseball games. Van and some of his buddies from high school were able to spend some time together in Atlanta watching one of the Braves series.

Nathan is at a resident camp this week. He was really looking forward to going to be with his buddies and he absolutely loves the camp counselors. He says they're "cool".

We truly covet all of your prayers for our family. Please continue to pray that Van and I will continue to grow with God while on His Journey. Please continue to pray that Nathan will feel a sense of security even in such uncertain times. Please continue to pray for Noelle's tumor. She is doing so well right now, we know it is all Heaven sent! Please pray that God will protect our family from unhealthy relationships. Please pray that we will have the courage to accept God's plan for our family; whatever it may be. Please pray that we will continue to put all of our faith and trust in God on a daily basis.

Thank you all for the support and encouragement you show to our family. Thank you for walking with us through the valley.

We Love You All,

Wendy, Van, Nathan, Noelle, and little Nicholas

Sunday, June 09, 2002 at 08:22 PM (CDT)

The beginning of Noelle's week was terrific again. She is beginning to tire easily. It seems that the fluid retention is slowing her down again. Noelle wanted to go out this weekend, however she only wanted to go out Sunday morning and she was very tired after just one stop. We love to take Noelle out whenever she feels that she has the energy. We are going to have to think of a different way to get Noelle in and out of our house as it is getting more and more difficult for Van to lift her.

We are making the best of the time we have with Noelle. We realize that the burst of energy that she had over the past two weeks was something that we all had been praying for. We certainly took great advantage of it. We don't know that will get the miracle that we want, but we are getting more quality time; that is a miracle within itself.

We are not sure of Noelle's exact neurological status. This is something that is difficult to assess due to Noelle's decreased mobility. We do notice that she continues to have difficulty with her peripheral vision and her left eye does not move to the left at all. Noelle is having a very hard time walking again.

With this type of tumor, the swallowing reflex is usually affected. Noelle has had difficulty swallowing on occasion. She did have an episode on Wednesday evening where she could not swallow her saliva at all.This episode lasted until 2:00 am and then she fell asleep. Though this was terrifying for all of us, Noelle realizes that she may lose the ability to swallow completely. She is trying to decide which option she will take in the event that this should happen. We are thankful that Noelle has had no more of these episodes since Wednesday.

Noelle's attitude remains unchanged. She still motivates the entire family in so many ways. We are very lucky to have her. We cannot ever complain about our situation. Noelle is such an incredible gift from God. Her spiritual awareness continues to keep us in awe. We are trying to focus on what Noelle can do rather than what she cannot do. We tell her everyday how lucky we are to have both her and Nathan and to have had Nicholas. She always reminds me that we still "have" Nicholas.

We still have no help with Noelle. We checked a couple of different of options last week and have more to check this week.

Nathan finished his baseball season today. He really had a wonderful time playing and is already making plans for next season. Nathan and Van will be camping out in the "wilderness" this week with many other cub scouts. BOTH boys are looking forward to the upcoming event!

Nathan and Noelle got to throw a surprise birthday party for Aunt Joy this past week, with the help of their Papa! We were so happy that Uncle Blaine, Aunt Joy and Papa could come to our home on the same day. Everyone seemed to have a great time and Aunt Joy liked her gifts.

Van and I continue to covet all of your prayers in the many different areas of our life. We would like to ask you to continue to pray for rest, patience and courage for both of us. We would like to ask you to continue to pray for our marriage, that we will continue to have time to "just talk", something we have missed out on for so long. Please continue to pray that Noelle will have the much needed strength to get through each day and for her many other health needs. Please pray that Nathan will continue to enjoy his summer and enjoy just being nine. He has had to grow up very fast in so many different ways. Please pray that he will feel comfortable enough to open up to us whenever he needs to talk. And please pray that we all will feel a sense of peace when we think and talk about Nicholas. Each of us have missed him so much this week. Describing our feelings and emotions are extremely difficult, but please know we all hurt terribly and miss him very much.

Thank you all for your continued support and encouragement. Thank you for continuing to send cards and care packages to the children. They really love everything you do for them. You are giving more to our family than you will ever know. We will post updates as they come.

We love you all,

Wendy, Van, Nathan, Noelle and little Nicholas

Monday, June 03, 2002 at 11:55 AM (CDT)

Noelle had another wonderful weekend! It is so hard to believe that her new medications are working so well.

The fluid retention that was once a major concern and inhibitor is no longer so evident. Noelle's old personality is showing through more and more. She will have conversations that do not completely involve food and she is showing interest in some of the old activities she once enjoyed.

Noelle is now using her oxygen when she feels it is necessary. This is a huge step for her. She still has a hard time walking and has not decreased her steroids at all. We always have the option to adjust the dosages of her medications when we would like to. Making the best decision is very difficult, not to mention the amount of pressure this type of decision brings forth. Noelle's condition is not exactly predictable which means there is not a precise scientific approach to follow.

Noelle had the energy and desire to go out again this past weekend. She actually went out both Saturday and Sunday. This is another huge answer to prayer! Just the mere fact that Noelle even wanted to go out is amazing!

We still have no help with Noelle. The former agency that we used for Nicholas and Noelle is unable to help us. Please pray for me as I'm not sure that I have the energy or desire to continue searching for help through agencies. We have begun to widen our search by talking to our friends in hopes that we may find the right person. We hope that by taking a different approach we can find someone that will work well for all involved.

Nathan will be finishing up his regular season of baseball this week. The tournament will then follow. He is excited about the upcoming games that he will be playing in.

Thank you for continuing to pray for our family as we continue to grow with the Lord.

Love,

Wendy, Van, Nathan, Noelle, and little Nicholas

Monday, June 03, 2002 at 11:55 AM (CDT)

Noelle had another wonderful weekend! It is so hard to believe that her new medications are working so well.

The fluid retention that was once a major concern and inhibitor is no longer so evident. Noelle's old personality is showing through more and more. She will have conversations that do not completely involve food and she is showing interest in some of the old activities she once enjoyed.

Noelle is now using her oxygen when she feels it is necessary. This is a huge step for her. She still has a hard time walking and has not decreased her steroids at all. We always have the option to adjust the dosages of her medications when we would like to. Making the best decision is very difficult, not to mention the amount of pressure this type of decision brings forth. Noelle's condition is not exactly predictable which means there is not an precise scientific approach to follow.

Noelle had the energy and desire to go out again this past weekend. She actually went out both Saturday and Sunday. This is another huge answer to prayer! Just the mere fact that Noelle even wanted to go out is amazing!

We still have no help with Noelle. The former agency that we used for Nicholas and Noelle is unable to help us. Please pray for me as I'm not sure that I have the energy or desire to continue searching for help through agencies. We have begun to widen our search by talking to our friends in hopes that we may find the right person. We hope that by taking a different approach we can find someone that will work well for all involved.

Nathan will be finishing up his regular season of baseball this week. The tournament will then follow. He is excited about the upcoming games that he will be playing in.

Thank you for continuing to pray for our family as we continue to grow with the Lord.

Love,

Wendy, Van, Nathan, Noelle, and little Nicholas

Tuesday, May 28, 2002 at 10:11 AM (CDT)

Last week Noelle's symptoms remained somewhat stable. We had a couple of really hard days with some of the symptoms, but this past weekend was absolutley wonderful.

Noelle began to laugh with the family and crack jokes with the Van. She asked several times to be taken to the dining room table for meals and to color. She even asked to go out to lunch and to the grocery store! Noelle has not been out of the house in about one month. What an answer to prayer!

We still have no help with Noelle but are very prayerful that it will come soon. Please continue to pray that the right person will come and that not only will Noelle feel comfortable but we will as well. Please pray that I will be courageous enough to allow someone else take my place for a few hours each day without reluctance.

We continue to be grateful that the insurance company continues to help us sort through all of the EOB's (explanation of benefits) that come in the mail. I still spend quite a bit of time sorting through the EOB's and mailing the providers checks as they are being sent straight to us. This work is very time consuming and not to mention extremely confusing.

Nathan continues to play baseball and still loves pitching. He is excited that shcool is out and has begun the fun events that summer has to offer. Nathan is very excited that he and a friend will be sleeping out in the backyard in his tent tonight. He is preparing himself for cub scout resident camp.

Last Thursday, Nathan had the opportunity to accept a Certificate of Participation on Noelle's behalf from her school during the Kindergarten Graduation Ceremony. This was such a beautiful ceremony bringing up so many differnet emotions. Holding back the tears was very hard, but they did pour out when I returned for the chapel service on Friday for the rest of the elementary school. It was such a privilige to have the opportunity to personally thank the many people who helped us in ways beyond comprehension this year.

My health issue seem much better as I have not lifted Noelle at all since I was told not to. I am very thankful for the people who have come over to help me with the lifting. While at the doctors office last week, I had some testing done and everything has come back normal. Praise God!

I have been given the opportunity to allow God to work in my life in other areas, one in which I have begun a Bible study with some of my peers in our Bible Fellowship Class. This has proven to be a step in such a wonderful direction for me as I have been pretty much isolated for the past year taking care of Noelle and Nicholas. By being in this Bible Study my heart has an immense appreciation for the many many caretakers who are out there with no opportunity of relief. I am so grateful that God has given me the opportunity and courage to take the first step to get out again. I am also glad that God is giving me such a desire to pray like never before for the other dedicated caretakers who give up, and receive, so much from the caring of their loved ones.

Van continues to work and spend time taking Nathan to baseball and scouting events. He is having a blast with Noelle since she is in her "picking" frame of mind. He is determined to work-out in the gym hard this week, as Noelle has allowed Van to participate in her favorite extracurricular activity; Eating!

Van and I have really felt all of your prayers for our marriage and are working very hard to allow God to restore the beautiful union He allowed us to have many years ago. We continue to go to our church for grief counseling on a regular basis as well as now seek counseling individually. This seems to be such a tremendous help for us.

I want to thank all of the wonderful people who were there to help us in so many different areas of our life last week, as last week was kind of tough. Thank you for allowing God to use your talents and strenghts to help us stay focused.

A special thank-you to Gina Galdstone for updating our pictures in the photo album again! As always, you have done a great job!

We also want to thank everyone who visits this web-page for all of your continued support and encouragement through your prayers, phone messages, cards and all of the other things you do to let us know you care. We hope and pray that God is your true inspiration as He is ours. Thank you for walking with us in the valley as we continue on God's Journey.

We Love You All,

Wendy, Van, Nathan, Noelle and little Nicholas

Tuesday, May 28, 2002 at 10:11 AM (CDT)

Last week Noelle's symptoms remained somewhat stable. We had a couple of really hard days with some of the symptoms, but this past weekend was absolutley wonderful.

Noelle began to laugh with the family and crack jokes with the Van. She asked several times to be taken to the dining room table for meals and to color. She even asked to go out to lunch and to the grocery store! Noelle has not been out of the house in about one month. What an answer to prayer!

We still have no help with Noelle but are very prayerful that it will come soon. Please continue to pray that the right person will come and that not only will Noelle feel comfortable but we will as well. Please pray that I will be courageous enough to allow someone else take my place for a few hours each day without reluctance.

We continue to be grateful that the insurance company continues to help us sort through all of the EOB's (explanation of benefits) that come in the mail. I still spend quite a bit of time sorting through the EOB's and mailing the providers checks as they are being sent straight to us. This work is very time consuming and not to mention extremely confusing.

Nathan continues to play baseball and still loves pitching. He is excited that shcool is out and has begun the fun events that summer has to offer. Nathan is very excited that he and a friend will be sleeping out in the backyard in his tent tonight. He is preparing himself for cub scout resident camp.

Last Thursday, Nathan had the opportunity to accept a Certificate of Participation on Noelle's behalf from her school during the Kindergarten Graduation Ceremony. This was such a beautiful ceremony bringing up so many differnet emotions. Holding back the tears was very hard, but they did pour out when I returned for the chapel service on Friday for the rest of the elementary school. It was such a privilige to have the opportunity to personally thank the many people who helped us in ways beyond comprehension this year.

My health issue seem much better as I have not lifted Noelle at all since I was told not to. I am very thankful for the people who have come over to help me with the lifting. While at the doctors office last week, I had some testing done and everything has come back normal. Praise God!

I have been given the opportunity to allow God to work in my life in other areas, one in which I have begun a Bible study with some of my peers in our Bible Fellowship Class. This has proven to be a step in such a wonderful direction for me as I have been pretty much isolated for the past year taking care of Noelle and Nicholas. By being in this Bible Study my heart has an immense appreciation for the many many caretakers who are out there with no opportunity of relief. I am so grateful that God has given me the opportunity and courage to take the first step to get out again. I am also glad that God is giving me such a desire to pray like never before for the other dedicated caretakers who give up, and receive, so much from the caring of their loved ones.

Van continues to work and spend time taking Nathan to baseball and scouting events. He is having a blast with Noelle since she is in her "picking" frame of mind. He is determined to work-out in the gym hard this week, as Noelle has allowed Van to participate in her favorite extracurricular activity; Eating!

Van and I have really felt all of your prayers for our marriage and are working very hard to allow God to restore the beautiful union He allowed us to have many years ago. We continue to go to our church for grief counseling on a regular basis as well as now seek counseling individually. This seems to be such a tremendous help for us.

I want to thank all of the wonderful people who were there to help us in so many different areas of our life last week, as last week was kind of tough. Thank you for allowing God to use your talents and strenghts to help us stay focused.

We also want to thank everyone who visits this web-page for all of your continued support and encouragement through your prayers, phone messages, cards and all of the other things you do to let us know you care. We hope and pray that God is your true inspiration as He is ours. Thank you for walking with us in the valley as we continue on God's Journey.

We Love You All,

Wendy, Van, Nathan, Noelle and little Nicholas

Sunday, May 19, 2002 at 07:59 PM (CDT)

Noelle had a much better week this past week.We are having to be careful with her skin on the back of her legs because her skin is beginning to tear. We continue to watch her walking as this is a major area that she is not doing well in. We have moved Noelle's hospital bed upstairs and she uses her bedside potty. The only walking she does at this point is from her bed or potty to the sofa which is literally about 2-3 steps.

We were concerned about how to give Noelle a real bath. We didn't want to totally rely on sponge baths, so we purchased a two-ring inflatable swimming pool and put it in the den where Noelle is. Noelle seemed to love being in the water. She thought it was really cool to take a bath in the den. Of course, Van and I were praying real hard that the pool didn't spring a leak!

We are going to try another new medication that might help Noelle not focus on food so much. We are not going to be able to decrease her steroids, but we are hopeful that this medication will help Noelle concentrate on other things. This medication will take about two weeks to get in her system.

We learned this past week that Noelle has been approved for nursing care. We are so excited to have the opportunity to get some help. Please pray that the right person will come along. Please pray that there will be a mutual feeling of comfort between Noelle, the CNA and the rest of the family. We realize that there will have to be a couple of different people sent to fill the number of hours that we were approved for, please pray that the interviewing process will not be prolonged by any unforeseen circumstances.
God allowed us to know exactly when to ask for help with Noelle. We know that the approval for nursing care for Noelle came at a perfect time because I was told this week that I can no longer do any heavy lifting for the next three months. I have unknowingly experienced some health problems from the prolonged lifting of Noelle and her and Nicholas' medical equipment. It was last week that I realized that something wasn't quite right and I went to the doctor. I must listen to the doctor about not lifting because I could further injure myself and have more serious problems in the future.

Nathan had the opportunity to be a ring bearer in a wedding yesterday. He is such a very handsome young man. We can truly see him growing up before our very eyes. We continue to tell him how lucky we are to have the opportunity to be his parents.

Nathan's last day of school is this Friday. He is ready for his summer vacation to start. When we looked at our calendar, we realized that his summer is going to be very busy. This is an answer to prayer for us. We don't want Nathan to not have fun because we can't get Noelle out anymore.

With our schedule over this past year Van and I have not had an opportunity to spend much quality time together. We have realized that we have not only put ourselves on the back burner, we have also put our marriage on the back burner.

We thought that the few good things we had, that weren't visibly being attacked in a negative way, would somehow still be there waiting for us in the good shape we left it.

Van and I have been harshly convicted this week that even though we had the best of intentions, satan does not care how tired or worn down we are nor does he care about the incredible trials we are going through. After all, isn't that when satan is going to attack?

Each day we struggle to keep our family from falling in the ditch. We always wonder if we are going to wake up from a horrible dream. The harsh reality is that we are not dreaming and we are going to face struggles on a daily basis. We are so thankful that our God has promised to never leave us. We are so thankful the our God does not break His promises as He has NEVER left us for one minute, even in the midst of total darkness. We are so thankful that our Father allowed us to choose to have a good attitude about our trials. We do not doubt Noelle when she says "God chose me to be sick". We know that God chose our family to endure these trials and test of our faith. We know that God wanted to take us on a journey, we had no idea it would be to the extent that it is.

We would like to thank the many of you who have already told us that you are praying for our marriage. We would like to ask all of you to pray for us to have the strength and courage to face each new day as we face new challenges. We would also like to ask you to pray that Van and I will stay unified in each daily decision and challenge we face.

Van and I agreed today that we sometimes feel like the little silver ball in a pinball machine. We feel that we are being thrown from one bumper to the next at a very fast rate with no opportunity to rest. We are also forced to quickly make important decisions that affect our whole family. Please pray that we will be consciencious about spending more quality time together on a regular basis. Please pray that we will give every situation in our life over to our Heavenly Father.

We would like to thank each and every one of you for your continued support through phone calls, cards, meals and the many other ways you are showing your love. We will always cherish all of your prayers. We want you all to know that we give God all of the Glory for every gift we receive.

We Love You All,

Wendy, Van, Nathan, Noelle and little Nicholas

Monday, May 13, 2002 at 07:48 AM (CDT)

Last week was very busy for us as well as Noelle. Noelle's care continues to get more and more difficult. We realize that most of her issues are related to the massive amount of weight she has gained over the past 7 months. It is very difficult to put Noelle on a scale. When we are able to get her on a scale her balance is not good so we are not sure how accurate the reading is, we think her weight gain is between 75-80 pounds.

Due to this weight gain, Noelle is unable to attempt going up or down the stairs. She no longer leaves the house. Walking is a very difficult task. Noelle's right side seems to have the most swelling which is the side that she uses the least. We have put Noelle's hospital bed up on the main level where she spends all of her time.

With Noelle spending all of her time on the main level, bathing is another issue. With the weight gain, giving her a sponge bath is simply exhausting.

Noelle's cognitive skills are still very intact. We can talk to her and she still understands everything we are saying and responds with appropriate conversation.

The medication we are using to help Noelle get rid of the excess fluid is still giving us some benefit. However, she continues to be swollen.

Noelle makes several trips to the bedside potty each night. For example, last night we put her on the potty every hour. She will not use anything like Depends and will not hear of being catheterized. This makes sleeping a major issue for us and Noelle. We do have medication to help Noelle rest, thankfully she can wake up when she needs to relieve herself.

We have seen no results from the new medication that we were using to help us decrease the steroids. We knew that this medication may not work for us, so we will continue to keep her steroids at their current dosage.

Noelle seems to have difficulty speaking at times. We are learning to use a small computer that will talk for her. Van and I can program this computer to say some of Noelle's most used phrases; things she needs or wants. If Noelle loses the ability to talk, we hope the whole family is comfortable using this computer with her.

We noticed that Noelle had some difficulty swallowing last week. This is another major concern of ours. Tough foods such as meat and bread are hard for her to swallow. If Noelle loses the ability to swallow, we must decide whether or not to put a feeding tube in her. It would be a tube that goes from her nose to her stomach or small intestine. These are both exactly like the ones that Nicholas had. Noelle is very reluctant to even hear us speak about this. She still insists that she does not want any tubes in her at all.

We are trying to honor all of Noelle's wishes. As the weeks go on, our decision to use any intervention is going to get more difficult. As parents, we want to do everything that we can to help her. Please pray that we will know when to listen to Noelle and when we will know to make the decision for her.

With Noelle's care getting more complex, we have had to ask the insurance company to reinstate her nursing hours. I need help with her daily care. We have not heard back from them as of yet. Please pray that we will get some help with Noelle and please pray that the right person will be sent to us.

Last time we had hours for Noelle, she did not feel comfortable with anyone except Nicholas' nurse. Last we heard Nicholas' nurse has a full time patient.

Noelle still loves to be read to. In fact, her Uncle Blaine was here last week and he taught her to read a book on her own. We also continue to do word search puzzles and kindergarten work books. She has informed me that kindergarten is too easy for her now, she is ready to move on to first grade!

Noelle has begun having us write stories for her. She talks and Van and I write what she says. Her stories are wonderful. The one thing they all have in common is that they all involve some sort of food!

Nathan is doing well. He is down to his last two weeks of school before summer vacation. He continues to play baseball and still loves to pitch. We are noticing that he is so much more interested in helping us take care of Noelle. He loves her so much and that love is now showing through in so many other ways. Just watching him mature is so wonderful. We continue to tell our children how lucky we are to be a part of their lives.

Thank you all for continuing to support and encourage us. Your prayers will be cherished forever.

We Love You All,

Wendy, Van, Nathan, Noelle, and little Nicholas

Friday, May 03, 2002 at 08:39 PM (CDT)

Noelle continues to have some good days followed by some not-so-good days. She continues to have a great attitude about her condition.

This week Noelle started a new medication to help rid her body of some of the extra fluid she is retaining. We are praying that this medication will help with the swelling in her feet as well as other parts of her body. We have noticed that Noelle's feet hurt quite a bit while she is walking.

Noelle started another new medication this week that we will use in conjuction with her steroids. This medication may help to inhibit tumor growth. The side effects are minimal if any at all, and we are very hopeful that by next week we can slowly begin to decrease the steroid dosage.

It is very difficult for Noelle to get out due to running out of enenrgy very quickly and her feet hurting. She still runs out of breath easily and experiences back pain. She has said that she does not want to go out anymore. Please pray that these medications will begin to work and that Noelle will begin to feel well enough to go out once again. Most of Noelle's other symptoms remain the same.

We realize that the new medications hold no guarantee, but we continue to place our entire situation in the Lords Hands. We know that whatever He has in store for our family is all a part of His perfect plan. We continue to be grateful that God continues to show His face each and every day in one way or another.

Please pray that we will accept God's will no matter how easy or difficult it might be. Please pray that we will hand every situation in our life over to God with complete trust in Him. Please pray for us as we continue to mourn the loss of our precious little Nicholas. We know that we will never be able to hold his flesh again, but we can always hold his memory in our hearts, no matter how happy or painful those memories may be.

We are so proud of Noelle for letting a friend stay with her tonight so Van and I could see most of Nathan's baseball game together. Nathan got to pitch tonight for the first time in his career. He was so excited. He did very well, with only a few "wild" pitches. When the game was over one of Nathan's friends, who happened to be on the opposing team, told Nathan that he almost broke his promise. When I asked what the promise was, the boy said that Nathan promised not to "bean" anyone! We told Nathan that was a GREAT promise to keep!

We would like to thank all of you for your continued support and encouragement as well as all of the many other ways you continue to help us as we grow with the Lord. We will always covet your prayers. Thank you for standing by our side no matter how deep the valley may seem.

We love you all,

Wendy, Van, Nathan, Noelle and little Nichoals

Friday, April 26, 2002 at 07:17 AM (CDT)

Noelle continues to experience good days. We are so grateful that she has the much needed energy to get so much enjoyment from the many days in a row over the past couple of weeks.

Noelle is having a difficult time with swelling in her feet, therefore it is hard for her walk at times due to pain. Her breathing continues to be affected at times as well. She is now using a hospital bed to sleep in at night. We also have oxygen in the home for her to use if she needs it.

We are not having much success in getting Noelle to use her oxygen. She is still pushing away her medical treatment. Noelle has so much fear and anxiety about receiving medical treatment as she remembers the vivid details of Nicholas' hospitalizations. She has told us many times that she does not want to go through what he did. Hospice is doing an incredible job of working with Noelle. Their approach with her is very slow and gentle.

Noelle's oncologist and nurse came to visit her this week at our home. Noelle was very relaxed and didn't seem to mind their visit. In fact, she has already asked me when they are coming again to see her. She wants to give them some more candy to take back to their office.


Noelle's outlook is still so positive. She never takes her eyes off of the Lord. She is standing so strong for not only herself but the rest of the family as well. It is so amazing for us to see how grown up the situation over the past year has made Noelle. She is aware of how serious her condition is and she is so full of the Holy Spirit, seeing the many details of her health status through optimistic eyes.

Much of Noelle's time is spent reading. She loves to read about Jesus, angels and heaven. Noelle is not reading on her own as of yet. If there is a new book laying around the house and she is not familiar with the story, she will turn the book into a Bible and begin reading the Word of God.

Noelle is also very interested in word search workbooks. She takes her time in being very careful to find each letter of a new word she is learning to read. She never gets frustrated with the "tricks" the books seem to play on us as we may think we have the word we are looking for and it turns out that the book was "tricking" us.

Our time is very precious and valuable with our children. Noelle's daily care is beginning to get more detailed in certain areas. Please pray for strength not only for Noelle but also for me, Van and Nathan. Please pray that we will accept each new day as a gift, each new challenge of that day as growth in a positive way and each new accomplishment of that day a blessing. And please pray that we will stay focused on our Heavenly Father no matter how deep the dips in the valley may get.

We are so thankful to every one of you for continuing to offer your support through phone calls, cards, e-mails, meals and the many other things you are doing to help us. We know that God continues to hold us tightly in the palm of His hand as He is allowing us to grow.

We Love you all,

Wendy, Van, Nathan, Noelle and little Nicholas

Saturday, April 20, 2002 at 06:28 AM (CDT)

This week has been very good for Noelle, thereby allowing the whole family to have many cherished smiles. Noelle has had a great deal of energy and has wanted to get out of the house several times over the past week. She spent an afternoon with one of her best friends from preschool. The girls celebrate their birthdays within two weeks of each other and this year Noelle was in Cincinnati so they couldn't be together. Noelle and Hally had lunch together at Hally's house followed by their own Barbie birthday cake. Noelle is still enjoying hers! After their cake they read books and watched a Mary Kate and Ashley Olsen video. When it was time to leave, Noelle and Hally decided that Hally would come over to Noelle's house for a little while. We were so glad that Noelle felt up to such a great time. We are so glad that Hally was able to spend some time with Noelle. What a praise!

Friday Noelle went on a picnic at Reynolda Gardens with some more friends, Julia, Brice, and Blake. Though the day was hot Noelle still managed to stay for an hour enjoying fried chicken, mashed potatoes, dirty rice and of course, strawberries. When the temperature proved to be more than what we all could stand, Noelle advised us that it was time to go home and take a nap.

Even after so much excitement, Noelle has her cousin, Tasha, up this weekend. Tasha is a teenager and we are sure that she would love to sleep in on Saturday mornings, but when she heard the sweet little voice of Noelle whispering, at 6:45 am, "Tasha, it's time to get up," Tasha seemed happy to start her day. We are certain that Tasha will sleep in next weekend! Just hearing the happiness in Noelle's voice when she and Tasha are talking is priceless.

Most of our time is spent trying to allow Noelle to do the fun things that she wants to do. Needless to say, everything else seems less important when Noelle has the much needed energy just to walk to the car and get in.

Nathan seems happy that Noelle has gotten out so much this week. He continues to be there for his sister,even when it seems so hard. Nathan continues to enjoy playing baseball and he is really ready for school to be out so he can start his summer vacation.

Noelle is very aware of her condition as is Nathan. My and Van's hearts melt when we hear both children pray at night always thanking our Heavenly Father for Noelle's "energy to have fun today."

As great of a week that Noelle had, we did have to increase her steriods again. Her drooling was beginning to return and she was feeling "woozy" when she was walking. Since the increase, she has had less symptoms.

Please continue to pray for us, as we are not certain what each new day will bring. Please pray for more energy to have many many more "good days". Please pray for us as we are still experiencing many sad feelings regarding the loss of Nicholas. All four of us miss our "little missionary" so much.

Thank all of you for your continued support and encouragement as we continue our journey. Thank you for always being there for us. We would like to especially thank you all for your continued prayers.

We will continue to post updates on a regular basis.

With Much Love,

Wendy, Van, Nathan, Noelle and little Nicholas

Tuesday, April 16, 2002 at 08:41 AM (CDT)

This past week was proven to be such an emotional time for our family. We received news from Noelle's oncologist that her tumor is very unpredictable and her good time left is uncertain, she could have 2-3 weeks or 2-3 months. (Though we were always aware of the uncertainty of the tumor, we were taken back by the news.) The pattern of brain stem gliomas are very hard to predict. We are hoping and praying that she has even longer than 2-3 months of good time left. We are sure that her doctor's goal was only to remind us to cherish each and every moment of good time that Noelle shares with all of us.

Van and I have elected not to reschedule the MRI. Noelle has a difficult time breathing while she is sleeping. If we were to reschedule the MRI, Noelle would need to be put to sleep, thus increasing her risk of not waking up at all.

We hold close to our hearts that NOTHING is impossible for our Heavenly Father. The tumor could disappear in the blinking of an eye. One of our prayers is for a complete recovery. Another one of our prayers is that God's will be done. And a third prayer is that will be courageous enough to accept God's will, whatever it may be.

We know that God hears all of us. And our plan may not be His. We will continue to cherish every single moment we have left with Noelle. We know that God is continuing to grow us each and every day. We must share that the growth we are experiencing is very painful and yet enlightening at the same time. We are so rejoiceful that God continues to hold us tightly in the palm of his hand while we are growing.

Noelle had an absolutely wonderful weekend. She spent the first half of Saturday with Aunt Joy and Uncle Blaine at our house while Van and I attended a seminar at our church. She then rode down to Mount Holly to an alumni baseball game that Van was playing in. We were SO excited that Noelle lasted the entire game. Then she was able to go to dinner with our family and some of Van's high school friends. What an answer to prayer!

While at the baseball game Noelle spent time talking to some people, never acting intimidated at all. She actually acted like she was enjoying her time there. Of course, we're sure that it was helpful that "hot-diggy-dogs" were there as well as cotton candy, snow cones, candy, bubble gum, etc. I don't think Noelle was empty handed for any amount of time. In fact, it seemed every time we turned around someone was offering Noelle some sort of treat. She was sure to feel like a princess.

I personally am very thankful for all of the help I received from everyone at the ball game while Van was playing. Noelle felt so secure. She even seemed to enjoy talking with the various children that approached her. Thank you all for the wonderful day. This day will NEVER be forgotten. And a special thank you for turning the game into a fund raiser for the children. You all are so amazing. Van is so lucky to know such a wonderful group of people. Every one of you hold such a special place in all of our hearts. We wish we could be at the fish fry on Thursday. I don't think we have had the opportunity to attend a fish fry since we left Mount Holly.

Nathan had a blast Saturday as well. He had the opportunity to play with some of the children that he went to church with when he was just a toddler. He truly enjoyed being able to throw the first pitch of the game, announce the winners of the raffle, play with all of the children, get free food and candy, and on and on. We have heard so many happy stories of his night that our hearts just soar with excitement. He tells us that he wants to attend baseball camp there with his dads old baseball coach. (He also says that he is going to break all of his dads records that have not been broken yet!)

We told Nathan we would see about baseball camp. Of course, Papa is all for it. One full week with Nathan doing what he used to do with Van; talking about memory lane, Papa is sure to have as much as, if not more fun than Nathan.

Anyway, thank you Mount Holly for the wonderful day Saturday.

A special thanks to all of the visitors to this web-page for your continued prayers and support. We took one day away this past weekend and it meant so much to our family but now we're back home and in full swing of our daily routine. Thank all of you for your continued cards, meals, words of encouragement, help with Nathan, and on and on.

We love all of you.

Wendy, Van, Nathan, Noelle, and Nicholas

Wednesday, April 10, 2002 at 07:21 AM (CDT)

When Van and I agreed to start this web page we agreed that we should always be very open and honest, even in the most difficult of circumstances. We have always been quiet and private people. We had our circle of friends and lived our life how we thought God wanted us to.

We never dreamed that God would use this web page to touch as many lives as it has. We never imagined that God would use all three of our children to spread and glorify His Holy name as they have. It never crossed our minds once that our family could give to anyone in our time of need.

We knew that by having a web page we could reach not only all of our family, but also our friends and fellow church members. We also knew that by having a web page we would cut down on the amount of time we spent talking on the phone and the number of times we would retell the same updates to many people. (This page has by far served its purpose.)

We realized that we would need to have prayer from many people to help us through our journey. We understood that we would have to depend on our fellow brothers and sisters in Christ for many things. We knew that God wanted to grow us, but we weren't sure how.

Yesterday, April 9, was Nichols' first birthday. Though unplanned, our day was spent remembering what Nicholas meant, and still means, to us. We know that this was another gift from God, I guess God allowed Nicholas to share another present with our family.

I want to thank all of you wonderful ladies who took the time out of your busy schedules to prepare lunch for me. I know that all of you made a sacrifice to be there. Lanie, thank you for opening your home to everyone. The decorations were great and the flowers will always be memorable. (Just remember, though Nicholas was very small, he created everlasting memories.) Thank you.

I also want to thank all of the ladies I had lunch with yesterday for the incredible scrap book you made for our family to enjoy. What an inspiration that was to me. I knew that I would not be able to read any of the cards while I was with you, in fact, I couldn't read anything until wee hours in the morning.

As I read every card and wiped away every tear I realized what Nicholas really meant to all of you. Thank you for truly opening your hearts to me; I needed that. Now I will open my heart to you. I have always admired and looked up to EACH ONE of you. I always used you as examples of godly wives, mothers, friends, and the list goes on and on. You will never know what yesterday meant to me. Each of you has been involved with our family since the beginning of our journey. I know that God put you in my life as forever Christian friends. Thank you for sharing your innermost thoughts. I thank God for the new respect He has given me for each of you.

As with all of the ladies I had lunch with yesterday, Van and I know that God put you all in our path to help us grow with Him. Thank you all for allowing God to work through you to help us. And as with all of those ladies, we know that all of you will always be forever our Christian friends.

I also wanted to thank Aunt Joy for coming once again to help us. You are always here for us whenever we need you. I am not sure our words are adequate enough to share how truly grateful we are to you and your family. WE LOVE YOU!

Van and I are still not sure how God will continue to grow us, but we know it will be good. God never makes a mistake.

Van and I have agreed that now is the time we must work on our grief. We know that working on our grief will add one more thing to our daily routine. But we know that we need to face our feelings and fears head on. We cannot sweep our feelings under the carpet. We need to reflect and feel. We need to be able to share our hurt and confusion with each other.

We have always felt that is important to ask for specific prayer requests for our children, but now we need prayer in a different sense for us. We are still physicially exhauseted and mentally drained. We know that God is not stopping. He is going to hold us in the palm of His hand while He continues to grow us. We know that we need to do our share of work even in the midst of our weakness. We are beginning to work through our feelings. We are sure to feel things that we don't understand.

Please know we are so thankful for each of you. Please know we are receiving your phone messages and e-mails. Please know that we are thankful for everything you are doing for us. We feel that the most important thing we need now is prayer. Please continue to pray for us.

We love and are thankkful for each and EVERY ONE of you!

Love,

Wendy, Van, Nathan, Noelle, and Nicholas

Saturday, April 06, 2002 at 07:47 AM (CST)

Noelle's week remained somewhat "stable". She seems to have some really good days followed by some not so good days. She continues to have difficulty with urinary symptoms.

We did sign Noelle up this week with the children's division of Hospice. They will be able to come to our home when Noelle has any symptoms related to her health as opposed to loading her up and taking her to the hospital. Van and I, as well as Noelle, are all very excited about this. Noelle has had the opportunity to meet the nurse a couple of times this week and seems very comfortable with her. This is a huge praise.

Most of Noelle's symptoms seem related to her weight gain. This is hard both for Noelle and us. We have decreased her steroids and she seems to be tolerating this well, however she still carries the extra weight. Noelle seems to tire out very fast just from a short walk from the sofa to the dining room table and she has had problems with swelling in her lower extremities.

Noelle is still apprehensive about being around other people. We are trying to work with her on this but are having little success.

Nathan has adjusted to his school routine and is playing little league baseball. He is very excited about baseball. He really wants to be a pitcher. This is his first year playing kid pitch. We are very excited that Nathan has the same coach that he has had in years past. The coach seems to work very well with all of the boys and always keeps their best interest in mind.

Nathan had the opportunity to go to Raleigh on a school fieid trip this past week. He seemed to have fun while learning. Nathan was particularly excited that Aunt Joy's name was picked to go on the trip as well. After hearing about her experience, I know that everyone who went had a wonderful time. We are so very proud of the young man that Nathan is becoming. He continues to show signs of maturity each day. Even though he is in the fourth grade and will always be a boy, we are especially happy that he is showing us that he keeps the love of the Lord in his heart and close by his side.

As for me and Van, our days have a new "busy", so different than before. We are trying to adjust as best we can. We still have some loose ends to tie up with the loss of Nicholas. Each day that I think I will begin to go through his things, I put it off to another. Please pray for strength as we know that the time is soon coming for us to do this. Please pray that we will continue to put God first in every aspect of our life. Please pray that we will accept God's plan for our life with His timing and not our own.

Each day seems to bring a new challenge, thanks to all of you who have been here to help us this week. Molly, I could have never gone through all of those EOB's without your help. Hospice, thank you for taking the time to copy all of those EOB's for us. To our insurance company, thank you for being willing to take everything back to help us understand each item listed.

To our church, thank ALL of you for holding us in the palm of your hand now more than ever. Thank you for showing us your neverending love, support and encouragement.

To everyone who has called and left a message on our answering maching, to everyone who has e-mailed us, and to everyone who has sent "care packages", thank you. We will get in touch with each and every one of you. It is taking longer than we would have expected. Please know that we are thinking about and thankful for you.

Many thanks to all of you for your continued visits to our web page. Thank you for all of your support and prayers as we continue to grow with God as we walk down His path.

We have placed the final order for the tapes of Nicholas' funeral service. They should be ready very soon, and we will get them in the mail to all of you who ordered them.

Thank you again for keeping up with us. We will continue to post updates on a regular basis.

We love you all,

Wendy, Van, Nathan, Noelle and Nicholas

Saturday, March 30, 2002 at 11:20 AM (CST)

We are happy to report that Noelle has had a couple of great days. She has adjusted to being home very well. Her UTI appears to be under control and she has begun walking around the house without assistance, although she still needs help on the stairs. We will reschedule her MRI in about another week or so.

We are all missing our little Nicholas very much. As we celebrate this Easter season without him here on this earth with us, we know that he will always be with us in spirit. It still amazes us what great things Nicholas accomplished in his 11 short months of life. Noelle has told us many times that "God picked us to be sick." We are sure that God "picked" Nicholas to spread His word in only the way that Nicholas could.

Nathan has spent his Easter vacation with Aunt Joy and Uncle Blaine in Roanoke. He seems to have had a great time. Though a lot of his time was spent making up missed school work, he still managed to mix in some fun time.

We will spend our Easter Sunday at Aunt Joy and Uncle Blaine's home. We are looking forward to special time together.

Our prayers will be with all of you as you celebrate your Easter Sunday. We will pray for safe travel, we will pray for renewed spirits, and we will pray for new beginnings.

Please continue to pray for us as we still continue down uncertain roads. We are SURE that God will not leave our side for one minute. And please continue to pray for us as we are trying to adjust to a new routine at home; one with and without Nicholas.

Thank you all for all of your support and encouragement over these past months and especially over this past week. We truly do cherish everything that has been done for our family.

WE WISH YOU ALL A HAPPY EASTER!

Love to all,

Van, Wendy, Nathan, Noelle, and little Nicholas

Tuesday, March 26, 2002 at 09:52 AM (CST)

We took Noelle to her appointment yesterday. There were some complications that didn't allow the MRI to be done. Somehow or another the needle that accesses her port-a-cath came out of the port itself, and the medication that should have made her drowsy deposited into her chest tissue not allowing the sedation to take place. Noelle complained of her chest hurting, when we invesitgated to see what was wrong, the needle fell from her chest.

Noelle was too upset to allow another try, and we weren't going to put her through anymore trauma. We do have to go back to the doctor today to flush out her port-a-cath incase there is any remaining medication. We will reschedule the MRI in a couple of weeks. We want to give Noelle a rest.

We will try to decrease her steroids again to a lower dose. Our prayers are that she will tolerate the lower dosage with no complications.

Nathan is in Roanoak enjoying time with Aunt Joy, Uncle Blaine, and Melanie. We will see him some time this weekend. We are hoping that Noelle will tolerate a trip to Roanoak to bring Nathan home.

We will continue to post updates as we know more information about Noelle.

Thank you all again for all of your prayers, support and encouragement.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Tuesday, March 26, 2002 at 09:52 AM (CST)

We took Noelle to her appointment yesterday. There were some complications that didn't allow the MRI to be done. Somehow or another the needle that accesses her port-a-cath came out of the port itself, and the medication that should have made her drowsy deposited into her chest tissue not allowing the sedation to take place. Noelle complained of her chest hurting, when we invesitgated to see what was wrong, the needle fell from her chest.

Noelle was too upset to allow another try, and we weren't going to put her through anymore trauma. We do have to go back to the doctor today to flush out her port-a-cath incase there is any remaining medication. We will reschedule the MRI in a couple of weeks. We want to give Noelle a rest.

We will try to decrease her steroids again to a lower dose. Our prayers are that she will tolerate the lower dosage with no complications.

Nathan is in Roanoak enjoying time with Aunt Joy, Uncle Blaine, and Melanie. We will see him some time this weekend. We are hoping that Noelle will tolerate a trip to Roanoak to bring Nathan home.

We will continue to post updates as we know more information about Noelle.

Thank you all again for all of your prayers, support and encouragement.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Monday, March 25, 2002 at 06:32 AM (CST)

Once again, we would like to thank all of you for all of your support and encouragement over the past 11 months.

We would like to thank Phil Henry, Jan Morrison and the many other people from Calvary who made sure Nicholas had an absolutely beautiful service. We would also like to thank Hayworth-Miller for the sincere compassion they always showed each and every one of us. We would like to thank Uncle Bill and Uncle Blaine for carrying their great nephew one last time. A huge hug and thank you to Aunt Joy for the most wonderful eulogy we have ever heard. We are so very proud of Nathan and the wonderful song he wrote for Nicholas back in January. He put in a final thought after Nicholas' home going and pubicly shared his unconditional love for his little brother. He then exhibited his love again by helping his brother to the gravesite. Nathan's courage is truly admirable. We are sure Nicholas was smiling that cute smile of his the entire day Thursday. And as Noelle says, "No more tears."

As our healing process begins, we will never forget our "little missionary". When we went to the grave site this past weekend, we heard the birds singing again! Victory is sure to be Nicholas'.

Several of you asked us if the service was taped. At the time we weren't sure. We did find out that the service was recorded. If you would like a copy of the cassette tape please e-mail us by this Friday as we will be placing our order to the church early next week.

We would like to ask all of you for your continued prayer as we travel down uncertain roads with Noelle. She is going for an MRI this morning. We hope to know the results this afternoon.

We will continue to update the web page as we now focus on Noelle's health.

Love to all-

Wendy, Van, Nathan, Noelle and Nicholas

Tuesday, March 19, 2002 at 04:34 PM (CST)

Thank you all for all of your wonderful words of encouragement during this difficult time for our family.

We do have a change in the Funeral Arrangements (the newspaper should have the correct information).

Visitation: 11:00 A.M. until 12:30 P.M. in the L.H. Angell Room at Calvary Batist Church (Peace Haven and Country Club Roads)

Funeral Service: 1:00 P.M. in the auditorium at Calvary Baptist Church.

Following the church service there will be a brief graveside service at Westlawn Cemetary in Clemmons, N.C.

Love to all,

Wendy, Van, Nathan, Noelle, and little Nicholas

Monday, March 18, 2002 at 09:27 AM (CST)

Nicholas Matthew Baber came to this world on April 9, 2001 with a mission. Even though Nicholas is no longer with us, his legacy will live on. He went Home to be with our Heavenly Father on Sunday March 17, 2002 at 11:10 a.m.

As hard as he fought, his suffering is now over. As Noelle says, "No more tears".

Nicholas: We will love you forever.

Thanks again to everyone who has keep up with us. All of the prayers, calls, cards, etc. are truly helpful. We love you all.

Funeral arrangements:

Thursday, March 21, 2002

Visitation 11:30 a.m. to 12:30 p.m. in the auditorium at Calvary Baptist Church in Winston-Salem (Peace Haven and Country Club Rds)

Funeral Service begins at 1:00 p.m.


Love,

Van, Wendy, Nathan, Noelle and Nicholas

Friday, March 15, 2002 at 11:23 AM (CST)

Last night was another tough night for little Nicholas. He had a hard time keeping his ventilator settings under control. His abdomen was drained of some fluid due to increased distension. Nicholas returned to a "stable" state after the draining was completed.

A doctor from each of Nicholas' medical teams met with me this morning. The general agreement was that Nicholas is not responding to the treatment that they are giving him. They are concerned that they are "doing to" Nicholas at this point rather than "doing for" him. His body is very tired and he continues to have some periods of time when he is terribly uncomfortable. Nicholas' kidneys continue to be a big concern to everyone as they are not producing adequate urine.

Van and I were given the option to try kidney dialysis through Nicholas' abdominal cavity. This will be truly experimental with no guarantees. We decided not to put Nicholas through that procedure. We do not want to do anything invasive or anything that may cause him anymore pain than what he already has. We did agree to drain his abdomen on a continuous basis at a very slow rate. Nicholas' abdomen has never been this large. (Within a 6 hour period, 550 cc was drained his belly and it is still extremely large.) The doctors are very concerned that Nichoals' blood pressure will begin to drop once the draining begins and that medications will not help his pressure return to a stable state.

Van and Nathan will come up today. Please pray for Nathan as he will be spending time with Nicholas at this uncertain time. Please pray that God will continue to use this situation only to glorify His Holy name. Please pray that Nicholas will be comfortable during this painful time of his treatment. Please pray the Van and I will accept God's will no matter what it may be. We know that God loves Nicholas far more than we ever could and that Nicholas was and is God's child first. If God calls Nicholas home, giving him back is not going to be easy. Please pray that we will remain courageous during each step we take over these next couple of days.

Noelle told me last night that she is not sad that Nicholas may go home soon because: "It's safe with Jesus and it's safe here, BUT there's no tears in heaven." Please pray for me as I try to put Noelle's words in my heart when the possibility of letting go seems so hard. Van and I will stand by Nicholas and not give up on him until the Lord says it's time to go.

Thank you all for your continued prayers and support. Thank you to the many people who continue to walk with us down God's path.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Thursday, March 14, 2002 at 11:20 AM (CST)

Yesterday proved to be a very hard day, both for me mentally and for Nicholas physically. He does seem to be in a great deal of pain in spite of being on a drip to control pain. He had a very difficult time keeping his blood pressure up as well as his heart rate. He was maxed out on all of the medications he could be given to keep his body in some sort of balance. One of the medications, Epinephrine, was given in excess to try and help his blood pressure stay up.

After a very long day with many many decisions to make, it was discovered that Nicholas' central line was leaking fluid from the incision site as well as into the vessels inside his body. This discovery warrented another central line to be placed and within a very short time period Nicholas' blood pressure and heart rate were both under control with the dosages being lowered on all of his medications.

Nicholas still looks very uncomfortable at times. The fungal infection is still in his bloodstream. The fungus was found in his urine today, which means that it is growing in his kidneys. Things are not looking very well for Nicholas. The doctors told us today that they could do a CT scan of Nicholas' abdomen to look for any "pockets" of fungus that may be "seeding". If the fungus is in an area that it could be removed, then they would remove it. If we agree to do this, there are risks involved. The fungal infection would still be in his bloodstream, and given Nicholas' current health status he may not survive such a surgery.

Van and I decided to let Nicholas have a day or so to just rest and see how his body does now that the central line seems to be working. There are so many difficult decisions that we must make very soon. We are always thinking about the treatment he is getting. We want Nicholas to be as comfortable as possible. We do not want his treatment for be for us, we want it to be for Nicholas.

The next few days will be very important for Nicholas. Please pray for him, his comfort, and all of the medical staff involved in his care. Please pray the if any of them do not personally know the Lord that they will come to find Him through Nicholas. We know that God is watching over Nicholas every moment of every day. We may not fully understand why Nicholas has to endure all he is going through, but we do know that through Nihcolas, God is being glorified each and every day. Scientifically, we know the future for Nichoals is not looking well at all. Please pray that Van and I will know when Nicholas has had enough.

Noelle had another appointment with the oncologist today. This appointment went very well. Her steroids continue to be reduced and she seems to be tolerating this well. Noelle has gained 59 lbs since being diagnosed. This weight gain is taking its toll on her body. She is in a wheelchair almost all of the time. Her vision remains a concern as well as her breathing. Her UTI symptoms are back again. She did have a urinalysis done today and we should know the results tomorrow. We contine to be happy that Noelle is still with us. She shows a lot of good "Noelle", and she remains one source of strength that we draw from regarding the potential outcome for both herself and Nicholas.

Nathan has resumed his normal schedule at home and is doing well. We have told him how seroius things are with Nicholas. He did have the opportunity to visit with Nicholas while he was here last week.

Uncle Bill returned yesterday from Maryland to help me and Grandma with our daily routine of tending to Noelle and Nicholas. We talk to Van several times each day updating him on Nicholas' status. If Nicholas stays stable, Van will return this weekend. If Nicholas continues to have problems, Van will return sooner.

We are so very grateful to everyone for making sacrifices to help our family. Thank you all for your continued support and encouragement. We are so thankful for all of the messages in the guestbook, they are really inspiring at the end of a long, draining day.

We will continue to keep this page updated as we learn more information.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Tuesday, March 12, 2002 at 08:46 AM (CST)

Nicholas had been dealing with fevers as high as 104 degrees and a decrease in his blood pressure since last week. By using his tongue, he managed to extubate himself two different times while in the PICU. His high fevers and low blood pressure are due to a fungal infection in his bloodstream. This fungal infection is most likely due to the many days he was on broadspectrum antibiotics for his fever which was due to unknown etiology at the time. Nicholas is septic and not doing well. His liver transplant is "on hold" until he clears this infection. The doctors are very concerned about this infection. Once yeast begins to grow in the bloodstream, it is very hard to clear. At the present time the yeast is not in any of his organs or his eyes. Nicholas is having a hard time producing urine again. His abdomen is very large as well. Nicholas is in need of a lot of prayer right now.

Noelle is doing well. She has no more UTI symptoms. I will take her back to the oncologist this week for an exam and a repeat on her urinalysis. We are in the process of scheduling an appointment for an MRI as well.

Nathan and Van will leave for home today. The visit went well and seemed to go very fast. Nathan did have an opportunity to visit Nicholas while he was here. He had fun playing with Noelle.

Many thanks to Aunt Shannon for all of the wonderful help while you were here this past week.

Grandma Pat will be back this week to help again and Van and Nathan will be greeted by Aunt Joy and Papa as they resume their new schedule.

We are very appreciative to everyone for all of their help. Thank all of you for the cards and "care packages" you are sending. Most of all, thank you for all of your prayers. Please continue to pray for all of us, especially for the children. Our days seem so long and our nights seem so short. We are getting very tired.

Thank you all for always being there for us.

Love,

Wendy, Van, Nathan, Noelle, and Nicholas

Tuesday, March 12, 2002 at 08:46 AM (CST)

Nicholas had been dealing with fevers as high as 104 degrees and a decrease in his blood pressure since last week. By using his tongue, he managed to extubate himself two different times while in the PICU. His high fevers and low blood pressure are due to a fungal infection in his bloodstream. This fungal infection is most likely due to the many days he was on broadspectrum antibiotics for his fever which was due to unknown etiology at the time. Nicholas is septic and not doing well. His liver transplant is "on hold" until he clears this infection. The doctors are very concerned about this infection. Once yeast bergins to grow in the bloodstream, it is very hard to clear. At the present time the yeast is not in any of his organs or his eyes. Nicholas is having a hard time producing urine again. His abdomen is very large as well. Nicholas is in need of a lot of prayer right now.

Noelle is doing well. She has no more UTI symptoms. I will take her back to the oncologist this week for an exam and a repeat on her urinalysis. We are in the process of scheduling an appointment for an MRI as well.

Nathan and Van will leave for home today. The visit went well and seemed to go very fast. Nathan did have an opportunity to visit Nicholas while he was here. He had fun playing with Noelle.

Many thanks to Aunt Shannon for all of the wonderful help while you were here this past week.

Grandma Pat will be back this week to help again and Van and Nathan will be greeted by Aunt Joy and Papa as they resume their new schedule.

We are very appreciative to everyone for all of their help. Thank all of you for the cards and "care packages" you are sending. Most of all, thank you for all of your prayers. Please continue to pray for all of us, especially for the children. Our days seem so long and our nights seem so short. We are getting very tired.

Thank you all for always being there for us.

Love,

Wendy, Van, Nathan, Noelle, and Nicholas

Tuesday, March 12, 2002 at 08:46 AM (CST)

Nicholas had been dealing with fevers as high as 104 degrees and a decrease in his blood pressure since last week. By using his tongue, he managed to extubate himself two different times while in the PICU. His high fevers and low blood pressure are due to a fungal infection in his bloodstream. This fungal infection is most likely due to the many days he was on broadspectrum antibiotics for his fever which was due to unknown etiology at the time. Nicholas is septic and not doing well. His liver transplant is "on hold" until he clears this infection. The doctors are very concerned about this infection. Once yeast bergins to grow in the bloodstream, it is very hard to clear. At the present time the yeast is not in any of his organs or his eyes. Nicholas is having a hard time producing urine again. His abdomen is very large as well. Nicholas is in need of a lot of prayer right now.

Noelle is doing well. She has no more UTI symptoms. I will take her back to the oncologist this week for an exam and a repeat on her urinalysis. We are in the process of scheduling an appointment for an MRI as well.

Nathan and Van will leave for home today. The visit went well and seemed to go very fast. Nathan did have an opportunity to visit Nicholas while he was here. He had fun playing with Noelle.

Many thanks to Aunt Shannon for all of the wonderful help while you were here this past week.

Grandma Pat will be back this week to help again and Van and Nathan will be greeted by Aunt Joy and Papa as they resume their new schedule.

We are very appreciative to everyone for all of their help. Thank all of you for the cards and "care packages" you are sending. Most of all, thank you for all of your prayers. Please continue to pray for all of us, especially for the children. Our days seem so long and our nights seem so short. We are getting very tired.

Thank you all for always being there for us.

Love,

Wendy, Van, Nathan, Noelle, and Nicholas

Tuesday, March 05, 2002 at 10:33 AM (CST)

Thank you all for sharing so much support and encouragement with our family. The appreciation we have for all of you means more to us than you'll ever know.

Noelle had a wonderful birthday yesterday. She really enjoyed all of the wonderful cards and gifts. She kept telling me that she didn't realize so many people loved her so much. Van's sister, Shannon, and I took Noelle out for a special birhtday lunch and then Shannon and Noelle played some games and watched a video later on in the afternoon.

Noelle has begun to have problems with her kidneys again. We did speak to one of the oncology fellows and she is helping us with medication for now. Noelle's symptoms are not as bad as they were when this happened at home. We will be setting up an appointment with one of the oncologists to establish a relationship while we are here in case anything else happens.

Nicholas remains in the PICU on the ventilator. He had been experiencing fevers as high as 102 degrees over the past couple of days. All of Nicholas' lines were cultured for the possibility of infection, and thankfully nothing major has shown up. We are still awaiting for the right liver to come along.

Van and Nathan will be coming up on Friday and will stay here until next Tuesday. Nathan is still doing very well and seems to like his new schedule. Please pray for Nathan as it was found this week that he has strep throat for the first time ever. He is currently taking antibiotics and he should be fine to see his brother and sister by the end of the week.

We would like to ask for continued prayer for Nicholas' potential liver. Please pray for the doctors who are taking care of Nicholas. Please pray that God will be at the center of EVERY decision they make regarding Nicholas' healthcare. Please pray that when the surgery does happen, everything will go very smoothly with no complications at all. Please pray that the right liver will come along for Nicholas, pray that there will be no question about any part of the liver or Nicholas' ability to accept the liver. Please pray for the potential donor and their family, that they will somehow know how truly grateful our family is for their willingness to help our child to have a chance to survive. Please pray that the antibiotics given to Nathan will work and that he will be free of all strep by the end of the week. Please pray for safe travel for Van and Nathan. Please pray for Shannon's husband and daughter who remain in California while Shannon spends this week helping me with Noelle and Nicholas. Please pray that the medication given to Noelle will work and that she will have no other problems while we are here. Please pray that we will be patient with the whole transplantation process. And please continue to pray that we will be courageous enough to accept God's will for our children whatever it may be.

We would like to say a special thank you to everyone here in Cincinnati who continue to make us feel so welcome. Thank you for your daily phone calls, visits, and cards. Please know that we thank God on a daily basis for your presence in our life.

Thank you to Papa for helping out so faithfully with Nahtan. Thank you, and happy birthday, to Grandma for all of your help up here in Cincinnati over the past two weeks. I couldn't have done it without you. I hope you get some rest this week while you are at home. Thank you to Aunt Joy for being the stability in Nathan's life while we are away. He has such a strong bond with you that I know will stay with him for the rest of his life. Thank you to Uncle Blaine and Melanie for sharing Aunt Joy with us. Thank you to Shannon for coming to Cincinnati to help us on such a short notice. We know that all of you are making a tremendous sacrifice for us.

Thank you just does not seem enough for us to say to all of you for your neverending support and encouragement. We thank you for loaning us strength when we are so tired. We thank you for all of your prayers, as we know that God does hear all of us. Thank you for all of your phone calls and cards. It really means a lot to us to know that you are keeping in touch while we are away.

We will continue to post updates as we know more information.

We Love You All,

Wendy, Van, Nathan, Noelle, and Nicholas

Thursday, February 28, 2002 at 01:00 PM (CST)

Nicholas was officially placed on the transplant list yesterday at noon. He remains intubated in the PICU. His abdomen remains swollen with free floating fluid. The doctors main goal at this point is to keep Nicholas stable until a suitable match is found.

Noelle remains stable. We talk to Nathan every night. He seems to be adjusting to his new schedule. Van is here in Cincinnati with me and Noelle but plans to return home Sunday.

Please pray that we will be patient as the search process for a liver is now underway. Please pray for the potential donor and the donor's family. Please pray that God will use this situation to draw us closer to Him. Please pray that Noelle and Nathan will continue to do well as we are uncertain as to how long this whole process will take. Please pray that we will accept whatever the future holds for Nicholas, regardless of the outcome. Please continue to pray for strength not only for us but for all of those that continue to help us on a daily basis. Please pray that Van will have the opportunity to return to Cincinnati quickly once a liver is found for Nicholas.

We truly feel all of your prayers. We know that God hears us. Even though we miss the daily contact with our friends back home, we know that God led us to Cincinnati for the well being of our "little fighter" Nicholas. God continues to walk with us while we are here. We have met many Christians here who continue to take our family by the hand and guide and support us each day.

Many thanks to all of the volunteers who continue to help us in so many ways. Thank you for the prayers, phone calls, cards and everything else you are doing to help us during these trying times. We appreciate everything more than you will ever know. We will continue to update the web page as we know more information.

Love to all--

Wendy, Van, Nathan, Noelle and Nicholas

Tuesday, February 26, 2002 at 08:35 AM (CST)

Thank you all for your continued support and encouragement. We are so grateful to you for all of your prayers. Thank you for allowing the Lord to use your talents to walk with us through this valley.

Nicholas had a pretty stable weekend. His muscle biopsy showed no metabolic or mitochondrial disorders! (PRAISE GOD!) He was going to be listed for a transplant on Friday until an infection was found in his abdominal area. The infection was treated with IV antibiotics and then he was going to be reassessed this week for possible listing again.

Nicholas was having difficulty breathing and some swelling was noted in his face yesterday. This morning the breathing was very labored and he was having blood loss from his Foley catheter. The doctors moved Nicholas to the PICU where he will stay until he gets a liver transplant. Nicholas was listed as a Class 1 which means he could have a liver anywhere from a couple of hours to a couple of days. Nicholas was intubated again and he will probably stay intubated until he is transplanted. He is also being kept sedated.

We are not certain why Nicholas has begun to decline so rapidly again. His body is very tired. Please pray for peace, patience and calmness for me and Van as we are about to walk uncertain roads. Please pray that we will have the courage to accept whatever happens, no matter what the outcome may be. Please pray that Nicholas will put forth such strength that we have never seen before. Please pray that the Lord will hold Nicholas so tight in His hands that no source of weakness will be shown. Please pray that God will be at the center of all decisions before, during and after the transplant. Please pray that the right liver will come for Nicholas and no complications will arise at any point of the transplant process. Please pray for Nathan and all of his caretakers as they and Nathan will remain home during this time of uncertainty. As you can see we have MANY MANY prayer requests some of which are not even listed. Please pray for everyone involved in this situation.

We are not sure how Nicholas will do during this major surgery. There is nothing else that can medically be done for him other than the transplant. Please pray that no matter what, God's Will will be done.

Van will fly to Cincinnati today. Please pray for safe travel. Nathan will remain in Winston-Salem with Aunt Joy, Uncle Blaine, and Papa. We felt that his schedule needs to remain as undisturbed as possible. Grandma Pat will remain up here in Cincinnati with me, Van, and Noelle. We are so thankful to everyone who is able to walk with us as we grow.

We are thankful that Noelle still remains stable. She will be celebrating her 6th birthday here in Cincinnati next Monday. (ANOTHER answer to prayer!) She has found a friend at the Ronald McDonald House. The little girl is her age. Though their illnesses are completely different, one of the main things that they have in common is steroids. Noelle feels safe around her new friend without fear of any staring or questions.

We will continue to post updates as we find out more information about the pending transplant.

We Love All Of You,

Wendy, Van, Nathan, Noelle, and Nicholas

Thursday February 21, 2002 1:33 PM CST

We are still awaiting word as to whether or not Nicholas is a candidate for a liver transplant. We should know for sure by next Tuesday. Nicholas has begun to feel bad again. His abdominal girth continues to get larger and he seems to be having some discomfort.

Each day brings forth more testing for Nicholas. He is tolerating everything very well. Nicholas has seen a neurologist, geneticist, G-I doctors, and other specialists. So far all of the exams and testing that they have ordered looks good.

Noelle's health is still holding up for us. During the day she spends a lot of time at the hospital with Nicholas and when she's not here, she is at the Ronald McDonald House with Van's mother. Noelle spends her evenings at the Ronald McDonald House with me. Noelle and I had the opportunity yesterday to meet one of the oncology doctors here at the hospital. She was very nice and told us exactly what to do should Noelle have any problems.

Nathan seems to be doing well at home with Van, Aunt Joy, and Papa. I did get a laugh from the message by Nathan's PE teacher. Thank you Sheri for continuing to pick Nathan up every day. He did not mention playing dodge ball in the dark, nor did he mention you were the target! (I think it's a conspiracy!)

We are so grateful to the members at Grace Bible Presbyterian Church here in Ohio. They have really made us feel as if we are at home. Even though we are prefect strangers, we are so united by our Heavenly Father. God has shown His face several times to us through these wonderful Christian people.

Please continue to pray that we will have the courage to accept whatever the doctors feel is best for Nicholas. Please pray that God will be at the center of any and all decisions the doctors make related to Nicholas' care. Please pray that Noelle will continue to have good health while we are here. Please pray that Nathan will continue to adjust well with our family being split. And please pray that my car will not present me with any more unforseen problems!

We are so thankful to Becky and Clark for taking Van home on such short notice. No matter what the situation or challenge of the moment seems to be, God continues to be here by our side holding us tightly in His hand.

Thank you all for continuing to pray for us. Thank you for your phone calls and cards while we are so far away. We will continue to update the page as we find out more information.

Here is the address to the Ronald McDonald House as requested by some of you:
350 Erkenbrecher Avenue Cincinnati, Ohio 45229.

We Love You All,

Wendy, Van, Nathan, Noelle, and Nicholas

Monday February 18, 2002 8:34 PM CST

Nicholas was moved to the High Acuity Unit on Saturday where he remains in stable condition. His abdomen continues to grow due to the free floating fluid. It is believed that Nicholas is in end stage liver disease, meaning his liver is not working much at all.

The doctors are running more tests on Nicholas' muscle biopsy. We hope to have more information no later than Monday, February 25th.

Nicholas saw the genetic doctor here today. His feelings are that Nicholas has a genetic/metabolic disorder. Depending on the type of disorder that Nicholas has will determine whether or not he is a candidate for a liver transplant.

Noelle seems to be feeling well. She is in great spirits. She was able to see Nicholas today for the first time since we have been here.

Nathan seems to be adjusting well back home. However, he has expressed that he misses us. We are thankful that Aunt Joy is able to care for Nathan while we are here in Cincinnati.

Wendy and I miss having friends and family close by. We can feel your prayers while we are here. Thank you all for the phone calls and messages on the guestbook. We are also thankful for Grace Bible Presbyterian Church here in Cincinnati for helping us adjust while we are away from home.

God continues to hold us in His hands even though the future is not clear for Nicholas. Please continue to pray that we will have the courage to accept the outcome for Nicholas even though it may not be easy.

Please continue to pray that God will hold Noelle close by His side as we still are not certain what His plan for her is.

Please pray that we will not grow weary as each day passes.

Love to all---

Van, Wendy, Nathan, Noelle and Nicholas

Friday February 15, 2002 1:38 PM CST

Nicholas and I arrived safely in Cincinnati yesterday afternoon. He seemed to enjoy being in the air. Before we left Baptist hospital he started vomiting blood as well as lose blood from his bottom. While flying, he did not have any complications.

Once we arrived to the hospital, Nicholas went to the High Acuity Unit where he started to vomit blood again. Nicholas lost a fair amount of blood when he was transferred to the Intensive Care Unit. The blood loss was critical while we were in the Intensive Care Unit. Not only was he losing blood from the vomiting he was losing tremendous amounts from his bottom.

The doctors took him immediately to have a endoscopy to find out where the blood was coming from so they could stop the bleeding. The bleed was found and stopped. The doctors are concerned that Nicholas may begin to bleed in his stomach at anytime.

Nicholas did tolerate the procedure very well and had a muscle biopsy this afternoon. The results of the muscle biopsy will determine whether or not Nicholas is a candidate for a liver transplant. We will not know anything until Monday or Tuesday.

If the biopsy shows that Nicholas has an underlying metabolic disorder or something that cannot be corrected, he will not go on the liver transplant list. We are very prayerful that he will be eligible, and that things will move quickly for Nicholas' sake.

We have to admit that we were very scared yesterday to see all of the blood that Nicholas lost. The medical staff handled the situation extremely well. The hospital here is amazing as well as the staff that we have met so far.

We would like to thank all of you for continuing to pray for us while we are here. We appreciate all of the calls we have already received as well as the messages in the guestbook. Thank you for loaning us your strength as we grow tired.

Nathan seems to be getting along well with his Papa. We have spoken to him about the severity of Nicholas' illness. Nathan is such a prayer warrior for his siblings.

Noelle is doing well. She has not had anymore symptoms with her kidneys. All of Nicholas' doctors here in Cincinnati are aware of Noelle's health needs and have offered to introduce us to the correct area of speciality for her if she needs medical care.

We will continue to update the journal as we find out more information.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Wednesday February 13, 2002 8:49 PM CST

I am happy to report that Van and Noelle arrived safely in Cincinnati tonight with no problems. Noelle seemed to tolerate the trip very well. They will stay in a hotel tonight and check in the Cincinnati Ronald McDaoald House tomorrow morning. Our reservations there was a big answer to prayer. We will stay at the Ronald McDonald House for the duration of our trip.

Please pray for Noelle as she has had some recent complications with her kidneys. We thought for the past three weeks she had been having urinary tract infections. We found out last night that she actually has something called hydronephrosis. She has an accumulation of urine in her kidneys that will not flush out, which is causing all of the UTI symptoms. Her doctors here in Winston-Salem have contacted the nephrologists and oncologists in Cincinnati where she may need consultation and treatment. Noelle's health is a tremendously large prayer request for our family while we are gone.

Nathan will remain here in Winston-Salem with family and friends. We are hoping that he will have an opportunity or two to visit us if our stay is prolonged. Thank you to Aunt Joy, Uncle Blaine, and Melanie for the sacrifice you all continue to make to help our family. And a special thanks to Papa and Molly for ALWAYS being here for us and helping in every way possible.

Nicholas is stable at the current time and remains in the High Acuity Unit. He and I will travel to Cincinnati tomorrow sometime.

Please pray that we will accept God's will no matter what it is. Please pray for Nathan while we are gone. Please pray for the health needs of Nicholas and Noelle. Please pray that we all will be able to identify the many new emotions we will be experiencing and that we will present all of them to our Heavenly Father. And please pray for Aunt Joy and Papa, who will be helping us with Nathan while we are away.

We are SO THANKFUL to ALL the staff of NC Baptist Hospital for the tremendous help you have given to Nicholas and Noelle. We will never forget any of you. We know that God put each and every one of you in our lives for a reason. Your kind tenderhearted ways and deep compassion for all of the many people you touch are such a blessing to everyone who has the opportunity to know you. You will always be remembered in such a positive way by all of our family. When we return home, we will be back to see you. Our hopes are that we will only be back for a friendly visit with a new liver! Thank you all again.

We are also very thankful to Miss Deborah, our home health nurse. You are such a wonderful person who has given so much to our family in so many different ways. We will be looking forward to seeing you once again. (Remember what Noelle said, "You're MY Miss Deborah". I guess that means your contract with her has not expired yet).

We offer a special thanks to Gina Gladstone for updating our photo album again. You are a true blessing to our family. And many thanks to all of you for your prayers, meals, words of encouragement, cards, and to those of you who made reservations at the hotel for Van and Noelle tonight. We could never thank each and every one of you enough.

We will do updates from Cincinnati as we know more information. We would love to hear from all of you via e-mail and phone while we are there. We are going to miss all of the daily hospital visits, phone calls, etc. we currently have. We do know that God lives in Cincinnati as well as Winston-Salem and He will be there for us too!

We Love You All,
Wendy, Van, Nathan, Noelle, and Nicholas

Monday February 11, 2002 8:42 PM CST

We are excited to report that Nicholas will be going to Cincinnati this Thursday for an evaluation for a possible liver transplant.

The evaluation will take a couple of days or longer to determine if Nicholas is a candidate for a transplant. If he is a candidate, I will be tested to see if I can be the donor.

Continue to pray for our family as this is the step we were hoping to take. Pray for a safe trip for Noelle and I as we drive to Cincinnati on Wednesday. Nicholas and Wendy will be transported by the medical team via air on Thursday. Nicholas will be hospitalized at Cincinnati Children's Hospital. Our initial appointment with the doctor will be sometime Thursday.

Nathan will be staying here with family.

Many thanks to everyone as the power of prayer does work. And many thanks to all of you for helping us prepare for this much anticipated trip.

We will continue to do updates from Cincinnati as we learn more information about the evaluation process.

We love you all,
Van, Wendy, Nathan, Noelle, and Nicholas

Friday February 8, 2002 7:35 PM CST

Nicholas is making such great progress. We get so excited each day to see him behave the way he once did before the surgery.

Nicholas was moved to the High Acuity Unit yesterday, where he may stay until he goes to Cincinnati. The trip may be as early as next week.

The swelling in his abdominal area has gone down a great deal, however, we still see that his liver and spleen are extremely enlarged. Before we go to Cincinnati, Nicholas may go to surgery here to remove the drainage tube from his abdomen if he can continue to absorb the extra fluid and not retain it.

Please continue to pray for our family as we have such difficult decisions to make regarding Nicholas' and Noelle's health care, Nathan's schedule, and many other important details.

Noelle continues to feel somewhat better this week. She still has difficulty standing up due to back pain and she continues to breathe quickly.

Noelle is such a blessing to our family. We are always in such awe regarding her attitude about her brain tumor. We know that the Holy Spirit encompasses her entire being.

Nathan still continues to serve his brother and sister in such amazing ways. He has a heart of gold when it comes to their needs versus his. To see him give even when it means he may do without is so inspiring.

We are lucky to have the unique opportunity to parent all three of these children. We are so thankful to God for sharing them with us. To watch children do God's will is such a gift.

Thank you all again for everything you are doing for our family. Thank you for walking through our valley with us. Thank you for loaning us your strength, support, and most of all, thank you for your never-ending prayers.

We love you all,

Van, Wendy, Nathan, Noelle, and Nicholas

Wednesday February 6, 2002 7:25 PM CST

Nicholas continues to make great progress. He does seem to have discomfort at times, but he is smiling and tracking as he did before the surgery. Our hearts are so filled with joy to see him sit up in his bed once again. When we look at him we truly see an incredible miracle that God has shown us.

We did hear today that Nicholas may be going to Cincinnati some time during the week of February 18 for a workup for a possible liver transplant. This workup could take a week or longer. Please pray for Nicholas, the doctors here and at Cincinnati, the decisions we will soon have to make, for Nathan as we will be away from him, and for Noelle's health while we are traveling and during our stay at Cincinnati.

Van and I are so hopeful that Nicholas will benefit in an incredible way from this potential visit. We have seen God work in so many wonderful ways so far, and we know that His miracles are endless.

Noelle seems to be feeling much better from her tough night Monday. We did spend some time at the doctors office yesterday. She had a CT scan of her brain which showed that the ventriculostomy is still draining well and no new changes were noted. She was given antibiotics and fliud through her port-a-cath. We are hoping that her symptoms from the other night were truly viral.

As you can see with the potential of travel in the near future we continue to have many prayer requests. We would like to thank all of you, once again, for your continued prayers, support, and encouragement. We know that God hears all of us. We also know that He is and has been faithful to us during ALL times of our journey.

We will continue to post updates as we know more.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Wednesday February 6, 2002 7:25 PM CST

Nicholas continues to make great progress. He does seem to have discomfort at times, but he is smiling and tracking as he did before the surgery. Our hearts are so filled with joy to see him sit up in his bed once again. When we look at him we truly see an incredible miracle that God has shown us.

We did hear today that Nicholas may be going to Cincinnati some time during the week of February 18 for a workup for a possible liver transplant. This workup could take a week or longer. Please pray for Nicholas, the doctors here and at Cincinnati, the decisions we will soon have to make, for Nathan as we will be away from him, and for Noelle's health while we are traveling and during our stay at Cincinnati.

Van and I are so hopeful that Nicholas will benefit in an incredible way from this potential visit. We have seen God work in so many wonderful ways so far, and we know that His miracles are endless.

Noelle seems to be feeling much better from her tough night Monday. We did spend some time at the doctors office yesterday. She had a CT scan of her brain which showed that the ventriculostomy is still draining well and no new changes were noted. She was given antibiotics and fliud through her port-a-cath. We are hoping that her symptoms from the other night were truly viral.

As you can see with the potential of travel in the near future we continue to have many prayer requests. We would like to thank all of you, once again, for your continued prayers, support, and encouragement. We know that God hears all of us. We also know that He is and has been faithful to us during ALL times of our journey.

We will continue to post updates as we know more.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Monday February 4, 2002 2:58 PM CST

We just wanted to do a quick update to let everyone know that Nicholas was taken off of the ventilator on Sunday! He is requiring oxygen by a nasal canula, however, he seems so happy to be breathing on his own.

Nicholas is giving us his usual smiles. We are so grateful to our Heavenly Father for being so visible right in the middle of Nicholas' care. It was this time last week that we weren't sure if Nicholas was going to make it. I remember our praying for just one more glance at his eyes and a smile. This is just another reminder of how strong our Lord is. He has given us more than what we asked for.

Please continue to pray for Nicholas as he still has a long way to go. He is continues to be very tender in his abdominal area and his throat seems to be very sore from the ventilator. He is working hard to get his voice back. We are still hopeful that Nicholas will come out of the PICU this week.

Please continue to pray for Noelle as she is not feeling well today. Her gait seems to be very unsteady and she is experiencing abdominal cramps.

Nathan still amazes us with his good-spirited self. He always seems to make his sister happy, even in the most difficult of circumstances. What a gift from God he is.

Many thanks to all of you for all of your prayers and support. And a special thank you to wonderful Aunt Joy for being here again. We are so thankful to her and her family for all of the help they are giving us.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Saturday February 2, 2002 6:03 PM CST

Little Nicholas continues to take steps in the right direction as he keeps showing small signs of improvement every day.

Nicholas has had a great week making progress at his own pace. The doctors tried to take Nicholas off of the ventilator today, however, he wasn't quite ready to take that step yet. They will try again sometime tomorrow.

We are hopeful that Nicholas will come out of the pediatric intensive care unit sometime next week, but we realize we are being very optimistic. We see that Nicholas looks very good physically, but we have to remember that he is still a very sick little boy. He continues to have severe liver problems as well as other problems. The doctors have spoken to us about the possibility of going to Cincinnati for a work-up for the posibility of a liver transplant. The one thing we have to see is if the liver is the primary cause of all of his problems. If it is, then we will most likely go to Cincinnati, if it isn't, then he probably will not be considered for a transplant.

We know that Nicholas' tremendous progress this week is a true gift from God. The first few days after surgery Nicholas was not doing well at all, and we were told to be prepared if he didn't make it. His kidneys had stopped producing urine, and without his kidneys working he would not have made it. We know that God is truly in control of all of the progress that Nicholas has made. We saw a huge miracle this past week, and every day, as we continue to see the progress Nicholas makes. We are not sure how much progress he will make or how well he will get, but we know that through God, Nicholas is getting his miracles. Please rejoice with us as we give all of the glory to our Heavenly Father for all of the wonderful mercies He has shown us this past week.

We continue to be thankful to Nicholas' doctors for taking small steps with him and not rushing his recovery. We also continue to be thankful for the wonderful care Nicholas receives from all of the staff in the PICU, they are all so amazing and treat him so well.

Noelle continues to enjoy being with her home health nurse. We are so grateful for Noelle's attitue. It is such a comfort to all of us to know that she is happy and content while we are at the hospital. We have noticed this past week that Noelle is breathing heavier and faster. We are not sure if this is due to more weight gain or if the tumor is manifesting itself again. Please continue to pray about her health needs.

We are not sure what God's plan is with Noelle and Nicholas. We do know that He has NEVER left our side while we are on this journey of great uncertainty, and for that, we praise Him.

Nathan played in his first basketball game today since he broke his arm. He did very well and had no complications. Please continue to pray for Nathan as he continues to have to see the many health needs of his siblings. He is so giving of himself to his brother and sister and is so understanding of our needing to be with them. We are lucky to have the opportunity to parent him.

We would like to thank you all again for all of your support and encouragement. We are so thankful for all of the wonderful things you all do for our family. We would also like to thank the pastors of our church for being so attentive to our situation last week and for being there as much as you were to listen to us and to advise us. You were all a tremendous help during a time of such heartache.

We would like to thank Uncle Bill for being here for the past 2 weeks with no break. We know that his being here was a sacrifice for him and his family, who live in Maryland. We also thank Aunt Joy, once again, for ALWAYS being here to help. She is really keeping the roads busy with her very frequent trips from Roanoake to W-S. We would like to thank Uncle Blaine and Melanie for being so unselfish and understanding.

We love you all,

Van, Wendy, Nathan, Noelle, and Nicholas

Saturday February 2, 2002 6:03 PM CST

Little Nicholas continues to take steps in the right direction as he keeps showing small signs of improvement every day.

Nicholas has had a great week making progress at his own pace. The doctors tried to take Nicholas off of the ventilator today, however, he wasn't quite ready to take that step yet. They will try again sometime tomorrow.

We are hopeful that Nicholas will come out of the pediatric intensive care unit sometime next week, but we realize we are being very optimistic. We see that Nicholas looks very good physically, but we have to remember that he is still a very sick little boy. He continues to have severe liver problems as well as other problems. The doctors have spoken to us about the possibility of going to Cincinnati for a work-up for the posibility of a liver transplant. The one thing we have to see is if the liver is the primary cause of all of his problems. If it is, then we will most likely go to Cincinnati, if it isn't, then he probably will not be considered for a transplant.

We know that Nicholas' tremendous progress this week is a true gift from God. The first few days after surgery Nicholas was not doing well at all, and we were told to be prepared if he didn't make it. His kidneys had stopped producing urine, and without his kidneys working he would not have made it. We know that God is truly in control of all of the progress that Nicholas has made. We saw a huge miracle this past week, and every day, as we continue to see the progress Nicholas makes. We are not sure how much progress he will make or how well he will get, but we know that through God, Nicholas is getting his miracles. Please rejoice with us as we give all of the glory to our Heavenly Father for all of the wonderful mercies He has shown us this past week.

We continue to be thankful to Nicholas' doctors for taking small steps with him and not rushing his recovery. We also continue to be thankful for the wonderful care Nicholas receives from all of the staff in the PICU, they are all so amazing and treat him so well.

Noelle continues to enjoy being with her home health nurse. We are so grateful for Noelle's attitue. It is such a comfort to all of us to know that she is happy and content while we are at the hospital. We have noticed this past week that Noelle is breathing heavier and faster. We are not sure if this is due to more weight gain or if the tumor is manifesting itself again. Please continue to pray about her health needs.

We are not sure what God's plan is with Noelle and Nicholas. We do know that He has NEVER left our side while we are on this journey of great uncertainty, and for that, we praise Him.

Nathan played in his first basketball game today since he broke his arm. He did very well and had no complications. Please continue to pray for Nathan as he continues to have to see the many health needs of his siblings. He is so giving of himself to his brother and sister and is so understanding of our needing to be with them. We are lucky to have the opportunity to parent him.

We would like to thank you all again for all of your support and encouragement. We are so thankful for all of the wonderful things you all do for our family. We would also like to thank the pastors of our church for being so attentive to our situation last week and for being there as much as you were to listen to us and to advise us. You were all a tremendous help during a time of such heartache.

We would like to thank Uncle Bill for being here for the past 2 weeks with no break. We know that his being here was a sacrifice for him and his family, who live in Maryland. We also thank Aunt Joy, once again, for ALWAYS being here to help. She is really keeping the roads busy with her very frequent trips from Roanoake to W-S. We would like to thank Uncle Blaine and Melanie for being so unselfish and understanding.

We love you all,

Van, Wendy, Nathan, Noelle, and Nicholas

Tuesday January 29, 2002 7:56 PM CST

Nicholas continues to head in the right direction as the days go on. He did start urinating this weekend and has continued to do so. We are so excited about this. Van and I did not want to make a decision about diuresis. God obviously made that decision for us.

Nicholas was more alert today than he had been since Sunday, January 20, the night before his surgery. His feeds were started back at 1cc per hour last night through his TP tube. Nicholas is tolerating these feeds very well so far. He had 3 bowel movements today. This is another answer to prayer. This means that the portion of the bowel that was removed and then reconnected is working properly.

The doctors are going to lower Nicholas' epinephrine to see if he can maintain his blood pressure on his own. Once he demonstrates that he can maintain his blood pressure they will begin to wean Nicholas off of the ventilator. He is still receiving blood products frequently due to the liver disease.He is having a hard time with skin break down on his face, back, and skin folds.

We are still uncertain as to what has caused to densities in his brain and are still awaiting a final diagnosis on the liver biopsy.

Nicholas still has a ways to go, however, he has come so very far. We give all of the glory to our Heavenly Father. God has always been by our side walking with us during our time of growth, and He has put all of you in our path to share our journey. Thank you for lending your support, sharing your strength and encouragement, and praying endlessly. We know God hears all of our prayers.

Noelle continues to have good days. She is staying home with Nicholas' home health nurse during the daylight hours so I can be at the hospital. (We are so excited that she is willing to stay with the nurse which makes it easier for me to be with Nicholas).

We are thankful for Uncle Bill from Maryland and for Aunt Joy from Roanoke. They have both been so helpful to us over the past two weeks. We are also very thankful to their families for being willing to share them with us.

We would, once again, like to thank all of you for your continued support. We are thankful to you for the meals you provide for our family at home and the hospital, the cards in the mail, the calls of concern, the help with the children, and all of the other wonderful things you are doing for our family. You have all offered such wonderful support for us. Thank you!

We will continue to update the web page as Nicholas continues to make progress.

We Love You All,

Wendy, Van, Nathan, Noelle, and Nicholas

Sunday January 27, 2002 9:55 AM CST

Since the last entry--Thursday the 24th-- Nicholas is stable if not somewhat better. His blood pressure has improved and he has begun to urinate. His kidneys are working and producing at the rate that is expected.

After further review from the head scan, Nicholas does not have a copper build up in the brain. The dense areas that are present are being further evaluated at this time.

Nicholas gave us a scare earlier this morning (about 1 a.m.) when he began to vomit blood. The cause was the G-tube that had worked its way to the esophagus and irritated some blood vessels. The tube was replaced into the stomach and all vital signs returned to normal.

Continue to pray that the kidneys will function properly.

Many thanks to all those that continue to check on us daily. It is such a blessing that we have family and friends that help in so many ways.

In His love-

Van, Wendy, Nathan, Noelle and Nicholas

Thursday January 24, 2002 7:55 PM CST

Today was a very busy day for little Nicholas. He had to undergo several tests due to a seizure this morning.(EEG, CAT Scan, and brain ultrasound)

Nicholas had to have a CAT Scan of his brain this morning to make sure there wasn't any bleeding in the vessels in the brain, and there wasn't. We did find out that Nicholas has some calcification areas in the brain which may be a link to some sort of metabolic or genetic disorder. The doctors seem to think there is a build up of copper in his brain. (When many of us eat things such as iron, zinc, etc. our bodies break these metals down with natural enzymes). We are not certain what the build up of copper means for Nicholas. We will have more testing done to find out.

Nicholas' kidneys continue to not put out as they should, this is still the chief concern at this time. If his kidneys do not start working soon, it may lead to kidney failure which may mean dialysis.

Nicholas has not had any more seizures at the current time. He is getting a new medicine to increase the blood flow to the kidneys which should help him to urinate. Please pray that this will soon start working.

Please pray for our family regarding the many difficult decisions that we will have to make soon. Please pray that we will make all decisions with clear minds. Please pray that before we make any decisions we will carefully pray.

We are getting help for Noelle from the home health agency that was helping us with Nicholas. This is an answer to prayer for us. Noelle no longer has to spend long hours at the hospital and really loves her nurse, however, in the evening she has anxiety attacks if either Van or I are not here with her.

Noelle is having a difficult time in the evenings with mood swings, balance and speech. She seems to have good days yet still stays tired. When she has a good day, it is exceptionally good and when she has a tough day, it is exceptionally tough.

Nathan continues to amaze us with his constant desire to help his siblings. He is so unselfish. Nathan is experiencing so many circumstances in his life right now that we cannot understand how he continues to be so strong, yet he is.

We continue to thank God for providing for us in so many ways while we are going through such a difficult time in our life. We are so thankful for all of you and for Aunt Joy's endless support in any and every way we need her. We are also so thankful for Van's Uncle Bill for coming from Maryland to help with Nathan after school and help with Nicholas at the hospital. Van and I could never do this alone and are thankful for all of the help we are getting.

We would also like to add a special thanks to Miss Gwen for your help with Noelle at the hospital and here at our home while we are at the hospital with Nicholas at night. We realize that it really takes a special person to help with her at this time in her life, especially while she is on steroids and has her mood swings. We know that God put you in each others path because He knew that you could share so much together, especially hot dogs and strawberry pudding!

We will continue to update you all as we know more information.

Thank you so very much for your prayers and support.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Wednesday January 23, 2002 6:16 PM CST

We wanted to do a quick update to let you all know Nicholas' current condition.

As Van mentioned previously, Nicholas had a tough time prior to surgery on Sunday night and on Monday morning. He really did scare everyone. Nicholas did come through the surgery very well, an answer to many many prayers.

Since the surgery Nicholas is not doing as well as he should. His little body is so tired. He is being kept very sedated. He is receiving blood, plasma, and platelet transfustions on a very regular basis, not to mention all of the other medications. He is having a hard time maintaining his heart rate and blood pressure. The doctors are able to help maintain these with the use of medications.

Nicholas had to have a larger drainage tube placed in his abdomen last night. He drained almost a liter again.

The most serouis problem at the current time is that Nicholas is not putting out urine like he should. The doctors have given him many different kinds of medications to help him to urinate, but he just isn't putting out.

Nicholas had a test done today to make sure there is adequate blood flow to his kidneys, and there is.

We are so prayerful that his kidneys are not shutting down. If that does happen, Nicholas will most likely not survive.

Please continue to pray with, and for us and for little Nicholas. He is a very sick little boy. Van and I are hurting so very badly. For us to see our precious baby suffer the way he is, and just because of an error truly breaks our hearts. Please continue to pray for us and our family.

We are so very grateful for the care that Nicholas is receiving at the hospital. His doctors, nurses, and all staff related to his care have truly taken a genuine interest in Nicholas.

We would like to thank each and every one of you for all of your support and encouragement. The meals you are providing to the home and the hospital are wonderful. The cards you are sending to the home are so encouraging. The help we are receiving with Nathan and Noelle is amazing. We really appreciate all of the many other wonderful things everyone is doing to help us through this very difficult time. Please know that we are SO TRULY GRATEFUL for ALL of YOUR HELP.

Due to Nicholas' current decline in his condition, we have had to ask for a tempory cessation of visitors unless you have been otherwise notified. We have had such an incredible response since Nicolas has been in the intensive care unit that it has become overwhelming. We know that you all care so very much, however, Nicholas really needs his rest and Van and I really do not want to leave his bedside.

We are asking that everyone call their contact person for current updates, or visit the web-site. There may be times that we do not have a chance to do an immediate update, but we will be as current as possibe.

Thank you all so very much for being there for us when we really need it the most.

We love all of you.

Wendy, Van, Nathan, Noelle, and Nicholas.

Monday January 21, 2002 8:26 PM CST

Nicholas had surgery today to repair the tears in the abdomen due to the misplacement of the G-tube. He had a rough night due to fluid build up in the abdomen. His breathing was shallow and he surely was in pain. Early this morning, he also had a high fever. Wendy and I thought that surgery may be cancelled but felt that the best thing for Nicholas would be the surgery in order to relieve the pressure in the abdomen. The surgeon agreed and we headed to the operating room around mid morning. After laboring all night, little Nicholas was tired. As we prepared to go to the operating room, Nicholas required more oxygen. Once in the holding room, Nicholas began to struggle even more with his breathing. As a result, the doctors put in a breathing tube in order to stabilize his vital signs. In the moments before the breathing tube was placed, the nurses did a great job of working with Nicholas as his little body was struggling to function properly.

Nicholas came through the surgery like the brave, fighting little trooper that he is. The surgeon was able to complete all the procedures as planned. The tears have been repaired. A central line was placed (the original broviac line is still in place but not being used).

He will be in intensive care for approximately 72 hours.

Many thanks to all those that called, came by and prayed for us during this hectic day. We continue to be blessed by everyone--those that help with Nathan, those that provide meals, those that run errands, those that check on Noelle, etc. These blessings are truly from God above as our family sees them everyday. Thank you for being a part of our life.

Much Love----

Van, Wendy, Nathan, Noelle and Nicholas

Thursday January 17, 2002 3:02 PM CST

Thank you all for your continued support and encouragement. We truly appreciate everything you all are doing to help us through this valley.

We continue to be so very grateful for the excellent care Nicholas is receiving from the nursing staff at Baptist Hospital. You, too are helping us through such a difficult time in our life. Nicholas knows you all love him and we know you were put in his path for a reason. Van and I thank you for doing such a great job answering our questions and being a wonderful advocate for Nicholas.

Nathan is doing very well since his cast has been removed. He is almost back to his usual active 9-year-old self!

We did receive great news about Noelle last night. Her doctors do not feel that a shunt is necessary at this time. We have increased the dose of steroids which should help with the symptoms of nausea and vomiting.

Nicholas had to be moved to the High Acuity Unit at about 1:30 am due to an increase in the amount of blood and fluid drainage from his "colostomy" site. He has had a blood and plasma transfusion. He is also experiencing problems with fever (102.5).

The doctors did a study on Nicholas to see if the stomach healed as well as the back part of the colon after the G-Tube pulled through. We found out that it did not close. There is probably colon contents emptying into his stomach which could be causing infection, fever, increased work load on the liver, etc.

Nicholas is scheduled to have surgery Monday morning to close these fistulas. His docotrs elected to wait until Monday so they could get Nicholas as prepared as they can to make is as safe as possible for him.

After the surgery, Nicholas will spend some time in the ICU, though we are not sure how long he will be there. This is typically a routine procedure for most patients, but because of Nicholas' already compromised health status, there is a greater risk of bleeding, infection, and so on.

Please pray for Nicholas as he goes through this surgery. Please pray that God will give him the strength he needs to heal properly. Please pray that God will give the surgeon a sense of increased calmness as well as good judgement with Nicholas on Monday morning. Please pray that Van and I will have increased wisdom and patience with all of the difficult decisions we have upcoming. And please pray that we will be obedient servants to Our Lord.

Many, many thanks to Miss Jo for all of your help this past week with all three of the children. You really are amazing!

We Love You All,

Wendy, Van, Nathan, Noelle, and Nicholas

Monday, January 14, 2002 7:53 pm

Our heartfelt thanks to all of your continued support for our family. Today was a very busy day for all of us.

Nathan was taken to the orthopaedic doctor today. His cast came off! We are all so delighted. Nathan was instructed to hold off on ALL sports activities until February 4, 2002. We know this will be very difficult for a 9-year-old boy, however, the doctor did tell him that the cast will go back on if he participates in any sports, including rough housing. Many, many thanks to Miss Becky for being so willing to help out today with Nathan's doctors appointment.

Nicholas is still in the hospital due to the misplacement of the G-Tube. The colostomy bag over the site is draining well. At one point he was draining old blood, but now it seems to be normal bowel movement and fluids.

The doctor's here in Winston Salem have taken Nicholas completely off of the Hyperal and have lowered his lipids. We are praying so very hard that Nicholas' liver can bounce back.(At last check his bilirubin was 29-- normal is .1-1.2) Nicholas' abdomen is swollen and has some fluid floating around again. He was given some lasix to help rid some of the fluid, however, his tummy is still pretty big.

Nicholas is tolerating his TP feeds and is up to 17cc per hour with minimal reflux. This is a big praise!

He is having a time with developing bouts of low-grade to regular fevers. We have had blood cultures and they are coming back negative. He has also had chest x-rays and urine cultures which are also negative. We are praying that these fevers are from teething.

Noelle had some problems with vomiting on Saturday. We were hoping that she only had a virus. She seemed to feel much better on Sunday, however, she started vomiting again early this morning.

Noelle went for her MRI today. Thanks to all of you who were praying for her to have a sense of peace and calmness today. She did very well for all of her appointments.

We were told today that the vomiting is from intracranial pressure. The MRI indicated that the tumor itself has grown some but the swelling around the brainstem itself had gone down since her last MRI in November. Her doctor isn't sure if the tissue in the center of the tumor is old, dead tissue or if the tumor is aggressively growing. As mentioned in a previous update, the only way to tell is to do a biopsy. Due to the location of the tumor a biopsy isn't an option for us. The intracranial pressure is coming from the top of the brain where there seems to be some fluid build-up.

Noelle's radiation oncologist is going to talk to her neurosurgeon tomorrow. It may be that Noelle is going to need a shunt and that the third ventriculostomy is no longer working.

Noelle is very apprehensive about having any more treatment. We have explained to her that by having the shunt, the vomiting will hopefully subside.

As you can see we have many prayer requests again this week. Please pray for Nicholas' bilirubin to get in the range it needs to be and for the fluid in his abdomen to be reabsorbed into his system. We also ask for prayer regarding Nicholas' fevers. We are praying that the fevers are truly from teething and teething alone. And please pray that Nicholas' liver will, somehow, heal. We are always asking for prayer for a complete diagnosis.

We are asking for prayer for Noelle that the tumor has stopped growing and that the tissue inside it is truly dead. We are praying that the tumor will start shrinking. Please continue to pray that Noelle will be calm about the upcoming days of doctors appointments and that the Lord will lay a sense of peace and calmness upon her.

Please pray for Nathan as he continues to give all of himself to the needs of his brother and sister. He is so determined to help out with them in any way necessary and possesses such a selfless nature. Van and I are so proud to see the young man he is becoming. We are so thankful to everyone who is helping us with Nathan. With such a busy schedule from day to day, Nathan has such a great attitude.

Thank you all for everything you are providing to our family. It really means so much to us.

And, once again, a special thank you to Aunt Joy for helping out so much with Nicholas and to her family for sharing her with us. We are so very grateful.

As you can see, even though we are going through such a difficult time with our children, God continues to bless us every day as we walk down new, uncertain roads. He is providing us with the grace we need when we need it. He has put all of you in our path to pray with and for us. And He shines His light even in the darkest circumstances. We will continue to give Him all of the Glory.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Wednesday, January 09, 2002 at 07:23 PM (CST)

We would like to thank you all once again for making our holiday season memorable. We will always cherish everything that everyone has done for our family.

Nathan's arm seems to be healing well. The cast hasn't slowed him down at all! He really enjoyed the snow last week with his friends. Please continue to pray for Nathan as he tries to maintain a balanced daily schedule as well as deal with the many emotions that come his way with Noelle's and Nicholas' illness.

We are so grateful that Noelle is still having good days. She has spurts of energy at times and has even tried to run while outside! Praise God!

We have noticed tonight that Noelle's breathing is somewhat labored and her left eye is floating again. Please pray that this is only temporary and will go away soon. She is scheduled for another MRI on Monday, January 14.

Noelle is VERY conscious about her weight gain. This seems to bother her a great deal. It is very difficult to get her to go out in public because she knows people are staring at her. Please pray that the Lord will give Noelle a sense of peace and security and that she will not feel uneasy about being around people.

We do have great praises regarding Nicholas as well as serious prayer requests.

As we mentioned in a previous update, Nicholas had surgery in Chapel Hill on October 31. He had a Broviac line placed to provide him with nutrition because he was having a hard time gaining weight and he was having problems with reflux. He also had a G-Tube placed to put some feeds straight into his stomach. It was expected that Nicholas would somehow keep his feeds down this way with less reflux.

We also mentioned that there was a complication with the placement of the G-Tube. Nicholas' stomach was punctured and his abdomen filled with air. This complication seemed to resolve itself within a matter of a few days.

Since Nicholas' surgery, he has slowly not tolerated his feeds and we have had to stop G-Tube feeds altogether and rely totally on the feeds through his Broviac line.

Van and I have always thought that Nicholas has experienced pain, however we just weren't sure where that pain was coming from. We have questioned the placement of the G-Tube several times. The doctors have done a few x-rays to make sure it was in place. We have also expressed concern that bowel movement was leaking out of the side of the G-Tube itself.

We knew that the TPN nutrition through the Broviac line would be tough on Nicholas' already fragile liver. Over the past couple of weeks Nicholas has seemed to have a tough time keeping his liver enzyme levels stable. He had to have a blood transfusion over Christmas and again today. He was also given plasma today.

We took Nicholas to Chapel Hill yesterday for a routine 3-week check up and were told that Nicholas' liver is in failure. We were also told to go ahead and contact Hospice due to the sudden rapid decline of Nicholas' health. The docotors just aren't sure how much time Nicholas has left.

While in Chapel Hill Nicholas coughed quite a bit. He coughed so much that he pushed the G-Tube out completely. We were able to see the pediatric surgeon and he placed another aparatus to keep the site open so we still could use it for future feeds.

After doing an x-ray to make sure that the new decvice was in place, it was discovered that the origional G-Tube was actually in Nicholas' colon and not in his stomach.

When the tube was originally placed it went through his colon on into his stomach. This was a complication unknown to anyone, other than to Nicholas, until yesterday. The proper way to do this procedure is to not go into the colon or any other organ, just go straight into the stomach.

We are now hopeful that Nicholas will have quite a bit of good time left and that this misplacement of the G-Tube was the cause of the sudden rapid decline of his liver function as well as that pain that we have known he has had for a while. We are also praying that the many other problems that we've seen over the course of the past two and-a-half months will begin to get better.

We returned back to Winston late last night and went straight to the hospital here. Nicholas is at Baptist Hospital and seems to be in a bit of pain. The doctors did remove this new device that was placed yesterday and have placed a bag over the site for the to allow the colon to drain on its own. We are praying hard that this site will heal on its own with no complications. It is possible that this site will not heal and he will have this "colostomy" for some period of time.

The dodtors placed a tube down Nicholas' nose to his small intestine today. We are praying that he will begin to tolerate some kind of feeding beginning tonight.

As you can see, the last 24 hours have so full of emotions for us and activity for Nicholas. We have seen God's handiwork throughout this 24 hours. God allowed Nicholas' tube to come out while we were in Chapel Hill, He also had the pediatric surgeon on call that was right for us. When the surgeon did this x-ray he injected dye into the new device to detect the exact location. God knew that the misplacement of the G-Tube would be found yesterday.

Please pray for Nicholas as his body has has been put into such a stressful situation. Please pray that the pain will subside quickly and that he will return home and have a chance to thrive.

This was obviously very difficult for us to hear. We really prayed over how to put all of this into words. We have always promised to be honest on this site. We feel that it is very important, especially now, to know how to ask everyone to pray for our family.

We are not sure that the finding of this misplacement will give Nicholas more time. He is such a strong baby and has such will to live. Please pray that he will fight now more than ever and that his body will begin to respond to feeds through this new tube. Please pray that we will not have to call Hospice. Please pray that Nicholas liver is not so badly damaged and that it will bounce back.

Please understand that we Praise God for allowing all of these findings to be discovered yesterday. We are giving Him ALL of the glory for another one of our "daily miracles".

Please pray hard for all of us as each day as God leads us down a new path with unknown certainties.

As Nicholas' condition changes we will keep you all updated. Thanks to EVERYONE for walking through our valley with us, offering your support through all you do.

We love each and every one of you!

We also want to give a truly heartfelt thanks to Aunt Joy. At just a moments notice, she drives to Winston (and Chapel Hill) to help us with Nicholas. It is truly special to see Nicholas' reactions when he sees Aunt Joy. This is another instance when we know that God has the right timing by placing Aunt Joy in Nicholas' precious life.

Wendy, Van, Nathan, Noelle, and Nicholas

Tuesday, January 01, 2002 at 08:19 AM (CST)

We would like to wish you all a very Happy New Year. Thank you so very much for including our family in your holiday season.
(We do apoloigize for the length of time between updates.)

Nicholas did get to come home from the hospital on Christmas day. He seems to have so much more energy since the blood transfusion.

Nicholas' doctors have mentioned to us that they would like to check his bone marrow to find out why he is not producing red blood cells like he should. This is a procedure where Nicholas would be put to sleep and a tiny chip would be taken from his hip bone and tested. Please pray that we will make the right decision regarding this test. As of now, we aren't sure what we are going to do.

Nathan seems to be handling his broken arm very well. He did fracture the arm which means he has a cast on for three weeks and then he goes back to the orthopaedic doctor. Nathan is disappointed about basketball season; this is another year of sitting on the sidelines without playing. If everything goes well, he may be able to play the last couple of games at the end of the season. He is trying to be creative with learning how to write with the cast on, since he is left handed.(He has said that maybe one of the girls in his class will feel sorry for him; that maybe they would write his work for him if he gives them the answers!)

Noelle continues to have good days, however, we are seeing some not-so-good days again. Christmas day was tough for Noelle. She was very tired and slept most of the day. We have seen several days like this. The doctors did tell us that this could happen. This is just a side effect of the radiation and should go away.

Noelle has gained a great deal of weight due to the steroids she is taking.(Thanks-a-million to all of you sho have brought clothes for Noelle to wear). She needs the steroids to help with the swelling in her brain, but it also causes weight gain, fluid retention, and mood swings. Please pray for Noelle as she is so consciencious of people staring at her. She is fearful of everything. It is very hard for us to take her anywhere due to her fears. This is another BIG prayer request.

Noelle has an appointment on January 14 for another MRI. She is determined that she is finished with all of her treatment. We try to explain to Noelle that the doctors are only trying to help her feel better. Due to steroids, we cannot reason with her. Van and I are very reluctant to force treatment upon her. We are going to take Noelle to this appointment and find out what course of treatment is next. We do know that anything else is experimental. This is yet another prayer request. Please pray that God will make the path that we need to go down so clear that there will never be a second guess on our part for all of our children.

We are so thankful that Noelle still wants to go to church. As long as she wants to go, we will continue to take her. She is so secure in her faith. Van and I literally draw our strength from her. What an optamistic attitiude she has about Jesus.

To see God's plan unfold is so amazing, yet so very hard at the same time. We can see His works every day. As we mentioned in prevoius updates, our needs are being met as they come. God is really taking care of us during our time in the valley. Please pray that we will continue to obey God in every aspect of our life. Please pray that we will set a good example for our children and never be a stumbling block to around us. Please pray that we will face our fears with great courage and not turn the other way when that seems to be the easiest route. Please pray that there is someone praying for us in our time of weakness, when we feel that we are saying the same things over and over to God everyday and we feel so tired. And please help us thank God for everyday that we have with our children. We know that every day we have is one more given from Him.

Thank you again for all of your support and prayers.

We love all of you,

Wendy, Van, Nathan, Noelle, and Nicholas

Monday, December 24, 2001 at 01:52 PM (CST)

We are so thankful that Nicholas was discharged from the hospital Saturday afternoon. He seemes to be doing well. It was discovered that Nicholas has some free floating fluid in his abdomen which is causing some distention, discomfort, and a cough.

We had Nicholas' weekly bloodwork done this morning. The results came back showing that Nicholas' hemoglobin was very low. He is going back to the hospital today for a blood transfusion. We should be able to come home tomorrow morning.

Noelle is still having good days. We have not noticed any more new symptoms. Praise God! We are thankful that we only have to deal with her current symptoms.

Please pray for Nathan as well. Nathan was playing football at his grandfathers this past weekend and broke his left arm. He was taken to the hospital here in Winston and was put in a splint until he goes to see an orthopaedic surgeon this Friday. (We don't think he will have to have surgery).

As you can see this week has been very busy for us. Please pray that we are able to stay focused on our Lord Jesus Christ this holiday season.

Many many thanks to all of you who are helping to make our holiday special.

We love you all.

We hope that you all have a Very Merry Christmas. May God's light so shine before you.

Wendy, Van, Nathan, Noelle, and Nicholas

Wednesday, December 19, 2001 at 06:48 AM (CST)

Many thanks to all of you who continue to be a constant reminder of what Jesus is all about.

Nicholas is still in the hospital. He ended up having a staph infection in his central line. If not treated properly he could have serious problems. Before Nicholas can come home he has to have two negative blood cultures; each culture takes three days to grow. The nurses draw his blood every night at midnight. We are still awaiting the results of his blood work. If we can't get negative blood cultures, his central line will be pulled and a new line will be inserted. (The doctors feel confident that this infection will respond to the antibiotics he is receiving).

Nicholas has become more dependent on oxygen while he has been in the hospital. He used to only use it at night, now he is using it 24 hours each day.Although he only requires a very small amount, please pray that he will be able to wean from the use of this.

Even though Nicholas has moments when he seems very lethargic and tired, we are seeing times when he wants to play. This is an indicator that he may be beginning to feel better.

Noelle continues to have her same symptoms. We have not noticed anything new with her. So, this is a praise. Noelle does tire very easily so she will be getting a wheelchair today to use for a while. This will also be a help to us as we will not have to carry her everywhere we go.

Nathan begins his Christmas vacation today at 2:40pm when school finishes. We would like to send a special thanks to all of you at the day school who have so faithfully helped us with his transportation to and from school over the past months. We also want to thank all of Nathan's teachers for being so understanding and loving him so much this year. This is all another way we see God's love for our family.

Please pray that Van will have a safe flight home from Atlanta today as he had to go down there for business yesterday.

Many many thanks to Aunt Joy who was so willing to come down this week to help out with Nicholas and Nathan. (And thanks to Uncle Blaine and Melanie for being so willing to share her!)

We sincerely appreciate the willingness of our friends who have helped us by spending the night with Nicholas while he is in the hospital. (Getting some rest is really a wonderful treat).

We will try to do another update as we find out more information on the status of Nicholas or if anything changes with Noelle.

Thanks again for all of your continued prayers and support!

We love all of you,

Wendy, Van, Nathan, Noelle, and Nicholas

Wednesday, December 19, 2001 at 06:48 AM (CST)

Many thanks to all of you who continue to be a constant reminder of what Jesus is all about.

Nicholas is still in the hospital. He ended up having a staph infection in his central line. If not treated properly he could have serious problems. Before Nicholas can come home he has to have two negative blood cultures; each culture takes three days to grow. The nurses draw his blood every night at midnight. We are still awaiting the results of his blood work. If we can't get negative blood cultures, his central line will be pulled and a new line will be inserted. (The doctors feel confident that this infection will respond to the antibiotics he is receiving).

Nicholas has become more dependent on oxygen while he has been in the hospital. He used to only use it at night, now he is using it 24 hours each day.Although he only requires a very small amount, please pray that he will be able to wean from the use of this.

Even though Nicholas has moments when he seems very lethargic and tired, we are seeing times when he wants to play. This is an indicator that he may be beginning to feel better.

Noelle continues to have her same symptoms. We have not noticed anything new with her. So, this is a praise. Noelle does tire very easily so she will be getting a wheelchair today to use for a while. This will also be a help to us as we will not have to carry her everywhere we go.

Nathan begins his Christmas vacation today at 2:40pm when school finishes. We would like to send a special thanks to all of you at the day school who have so faithfully helped us with his transportation to and from school over the past months. We also want to thank all of Nathan's teachers for being so understanding and loving him so much this year. This is all another way we see God's love for our family.

Please pray that Van will have a safe flight home from Atlanta today as he had to go down there for business yesterday.

Many many thanks to Aunt Joy who was so willing to come down this week to help out with Nicholas and Nathan. (And thanks to Uncle Blaine and Melanie for being so willing to share her!)

We sincerely appreciate the willingness of our friends who have helped us by spending the night with Nicholas while he is in the hospital. (Getting some rest is really a wonderful treat).

We will try to do another update as we find out more information on the status of Nicholas or if anything changes with Noelle.

Thanks again for all of your continued prayers and support!

We love all of you,

Wendy, Van, Nathan, Noelle, and Nicholas

Saturday, December 15, 2001 at 06:43 PM (CST)

Thank you all for your constant encouragement. We appreciate all of your support.

Our trip to Disney was much needed. We have some great memories that we will cherish forever. Nathan seemed to have fun riding some of the rides and, of course, shopping.
Van and I are so proud of the way Nathan is handling the circumstances of his siblings health needs. He has been so willing to help them whenever he can and always puts their needs first, even when it compromises his desires.

Noelle did experience some new symptoms while we were away. Her gait is unsteady, again and she drags her right leg when she walks. She tires very easily. She has always been right-handed and no longer uses her right hand except when absolutely necessary. She has done very well learning to use her left hand while writing and eating. Noelle's fine motor skills have also been affected. Things that were once so simple are now a major challenge. The vision in her left eye seems compromised.

Noelle is still experiencing mood swings due to the Decadron (steroid) that she is taking. Her night terrors are back and we are noticing some slurred speech at times. On occasion, Noelle really has to concentrate about what she wants to say in order to get her words out. She has anxiety attacks related to any medical treatment she is to receive as well as any unfamiliar situation she may be in.

Though it is so very hard for us to watch Noelle experience all of these symptoms, we still try to focus on all of the positve skills she still has. We continue to have good times with her that may not have been possible without the radiation treatment the she recently finished in November.

We have spoken to Noelle's oncologist and he has told us that her symptoms are most likely from the tumor itself. He oncologist will be letting us know if she still needs to have another MRI in January. (Noelle did have an MRI 3 days before our trip to Disney and it showed that there was no fluid build up in her brain. The tumor had not decreased in size but did lighten up on the scan itself. The only way to determine what the shade change means is to do a biopsy. Due to the location of the tumor, a biopsy will not be done because it is too dangerous.)

Nicholas did very well while we were gone to Disney. He never spiked a fever, which was one of our main concerns. Since we have been back home Nicholas has had some complications. His bilirubin level has markedly increased over the past week. The cause is most likely due to the TPN nutrition he is receiving. His weight is up to 12 lbs. 8 ozs. Nicholas did spike a fever of 102.6 yesterday and was admitted to Baptist Hospital. He has an ear infection which is what we were hoping caused his fever to be so high. We found out tonight that Nicholas does have an infection in his blood, sepsis. We will not know the type of infection he has until tomorrow. He was started on IV antibiotics and will be in the hospital at least until Monday.

Van and I seem very overwhelmed at times. We would like to thank every one of you for helping us through this situation. We truly believe that God has placed all of you in our lives. Your support and encouragement help us more than you'll ever know.

Most of all, we truly appreciate your prayers. We know God hears all of us. When the children first became ill we were looking to God for an immediate BIG MIRACLE. I guess something like the dividing of the Red Sea. What we were overlooking were the daily miracles that He so graciously gives us. We are now ever so grateful for every smile, every hug, every breath, and even every temper tantrum.

God gives us the grace, trust, and faith we need to get through each day. He has also provided us with wonderful christian doctors and nurses who truly care about all of our children. He has provided us with all of you who truly care about all of us. Through you, we get encouragement from your smiles, e-mails, cards, meals, gifts, and the list goes on and on. When Noelle told us that she saw angels in her dreams and then described them, Van and I were amazed. I can now tell her that we see angels of a different kind every day; all of you.

Somehow the words "Thank You" don't seem enough to say to all of you for all you've done for our family, but please know we are so grateful for EVERYTHING you do for us.

Please continue to pray for us as we continue down God's path.

We love all of you.

Wendy, Van, Nathan, Noelle, and Nicholas

Tuesday, December 04, 2001 at 07:55 PM (CST)

This journal entry originates from Kids Village in Kissimmee, Florida. Noelle and family arrived on Sunday, December 2 after leaving Winston-Salem on Saturday, December 1 and staying the night in Savannah, Georgia. Noelle tolerated the drive well with no complications.

The Lord is really blessing our trip this week. We are treasuring our time together as a family. We have appreciated our time of reflection, comfort, snuggles, and tears. We want to thank EVERYONE who helped to make this trip possible for all of us. We treasure the smiles and giggles that Nathan and Noelle are sharing with us.

Our first day here was great. Noelle got to meet many of the Disney characters at MGM Studios. Then she swam the night away with Van that evening. After so much fun, Noelle was tucked in that night by Mayor Clayton of Kids Village. Mayor Clayton is the rabbit mascot of the village.

Our second day, today, Noelle got to swim with the dolphins at Discovery Cove. What an amazing sight. In fact, the whole family was able to participate in that event. Noelle was able to swim with tropical fish and enjoy the lazy river. We were given many complimentary photos of our day there as well as a complimentary video of our dolphin swim.(New pictures of the children will appear on this site after we get home).

The treatment Noelle is receiving is amazing here, not only at the village but also at all of the theme parks. Noelle truly feels like a REAL princess.

We have had the opportunity to meet many unique families here. It has been great sitting and talking to parents who are going through the same thing as us and who have the same feelings that we have.

Tomorrow Noelle gets to eat breakfast with POOH. She is really excited about this, and has gone to bed early in preparation for her big day. She is ready to sing to POOH!

Nathan is so happy to be here with all of us. He has enjoyed watching Noelle get to do many wonderful things. The neat thing about Kids Village, and the theme parks is that Nathan gets the same royal treatment that Noelle gets! We love seeing the glow in his eyes this week.

Though there are some medical concerns we have about Noelle, we thought it would be good to do a "positive" update, and address the other concerns when we get home; especially after we have had time to talk to her doctors.

We will, however, share some of our daily praises with all of you. We have been thankful for the following: God's grace, patience, understanding, and love; the smiles and laughter of our children; special time together as a family; energy; rest; tears of love, joy, and saddness; and all of you who help keep us going. We KNOW God put each and every one of you in our path.

We have talked many times to the people at home who are helping out with Nicholas and have heard that he is doing well. His weight is increasing and he is laughing a lot. We would like to say thank you, once again, to the special people who are helping out with him this week. Thank you Grandma and Aunt Joy. We know that Nicholas really is happy and well cared for this week. We would also like to thank all of the nurses who are caring for Nicholas, especially Miss Jo. Thank you for taking time from your family to help ours.

We would also like to thank all of you who helped get us ready for our trip. It seemed that before it was time to go, things wanted to "not go so right". Thanks to all of you who helped get our home ready for Christmas. We heard it looks great. And thanks to all of you who are making our "little angles" yours this year for Christmas.

If you wonder how we are able to make the best of trying times, it's that God put all of you in our lives to help us handle all of our daily challenges. He gives us answers only when we need them, and He provides for all of our needs when He sees the need. To us it's all about God.

Thank you all again for logging on to this web site and for all of your encouraging words.

We love you all,

Van, Wendy, Nathan, Noelle, and Nicholas

Tuesday, November 20, 2001 at 11:13 PM (CST)

We once again would like to thank all of you for your thoughts and prayers. As you all know Nicholas came home from Chapel Hill Hospital on Monday, November 12 after being hospitalized for two weeks. He was then admitted to North Carolina Baptist Hospital on Thursday, November 15 for right upper lobe pneumonia.
Nicholas was discharged from NCBH on Friday, November 16 on IV antibiotics. Please continue to keep him in prayer as he was once again admitted tonight to NCBH for continued pneumonia in the right and left upper lobes. This pneumonia was most likely caused from aspiration during his bouts of reflux. He will continue to be treated with antibiotics and hopefully sent home soon.
Please pray for Noelle as she has regretfully started having symptoms of the brain tumor again. We have noticed the unsteady gait, drooling, severe depth perception changes,etc. Her oncologist has decided to start the steroids again.
The steroids in themselves cause even more symptoms, the most noticible ones are the severe mood swings and night terrors.
Please continue to pray for Noelle and Nicholas. We hate to see them go through such difficulties and feel so helpless when they are not well.
Please pray that we can somehow enjoy the holiday season together as a whole family without being in the hospital.
Please continue to pray for Nathan as he must see and absorb all of the medical needs of his siblings. We can't imagine how he is dealing so well with this just being 9-years-old. It is hard for us to see all of our children have to grow up so fast due to illnesses.
Plese pray for continued strength for me and Wendy as we continue to make so many decisions with such little rest. Please also pray that we will continue to be optimistic for the children while being realistic.
Please pray that we will continue to seek the Lord for all guidance first and that we will be thankful for all of our daily blessings as well as the little miracles we get. We are so very thankful for each day we have with our children.
Again we want to thank all of you for your continued suupport and encouragement during this difficult time. We could not go through this without you.
Thank you again.

We love you all,
Van, Wendy, Nathan, Noelle, & Nicholas

Friday, November 16, 2001 at 09:11 PM (CST)

Van & Wendy continue to be so very thankful for all the encouragement, prayer, and continuous support being provided to them.

Please be in prayer for Nicholas as he has continues to have severe bouts of reflux and developed a fever yesterday. Van & Wendy took him to Baptist Hospital and where he was admitted. They diagnosed him with pneumonia and he has been released today after being put on IV antibiotics. On Monday Nicholas' doctor will re-evaluate his condition.

The family rejoices as Noelle has had her last radiation treatment today! She will have a scan in eight weeks to determine the condition of the tumor. This wonderful little girl is doing tremendously! She continues to have problems with falling but the night terrors have subsided greatly - praise God!

Remember Van & Wendy as they continue to be so very exhausted...especially with Nicholas' problems this week.

Thursday, November 08, 2001 at 08:57 PM (CST)

Van and I would like to thank each and every one of you for your never-ending support, encouragement and prayers. The love you all are showing to our family will never be forgotten. Thank you for standing beside us as we travel a new journey with great uncertainty. Thank you for helping us keep focused on our Heavenly Father. We also thank you for all of the bible verses you send.

Noelle continues to have good days. Her night terrors are subsiding, yet still present. She is having some bouts with falling, but this is not as bad as it once was.

She will finish her radiation therapy next Friday, November 16. From there she will be closely followed by her oncologist here in Winston-Salem. If her symptoms return, the next treatment plan is an experimental protocol. Please continue to pray that the radiation therapy has made her tumor shrink and that she can resume her normal daily activities.

Nicholas continues to recover from surgery that was done in Chapel Hill on Wednesday, October 31. There were some complications that made the surgery take longer than anticipated. We still have no diagnosis for Nicholas. We do know that the biopsies of his large and small intestines were normal. (Praise God!) Nicholas' general surgeon did tell us that his tissues and organs are very fragile, and for that reason he is not a good candidate for the Nissen Fundoplication surgery. He is still having problems with continuous bouts of reflux.

Nicholas did see a metabolic specialist, neurologist, and gastroenterologist. They all seem to think that Nicholas has a multi-system disorder that is going to be very difficult to diagnose. The doctors are willing to go the full distance with us and their patience with this situation is encouraging.

Nicholas should be coming home from the hospital this coming Monday, November 12. The doctors want us to enjoy what good time we will have with left with him. Nicholas is not expected to survive this illness. It was estimated that he could have 2-3 good months left or 2-3 good years left. Nicholas is not expected to last through the toddler years. We were told that eventually his body systems will begin to shut down one by one. It is thought that Nicholas may pass on of SIDS.

Van and I truly debated as to whether or not to put all of this information on this web page. We decided to do so because we wanted everyone to know how to specifically pray. We thought that we would go up to Chapel Hill for a diagnosis and treatment plan then get Nicholas going on the right track. You cannot imagine how numb we are feeling right now. We know that God's plan is perfect. We will always hold on to our faith and turn to Him for all of our needs. We will continue to cherish each and every moment we have with all of our children, no matter how long or short that may be.

Please continue to pray for our family in the following ways: for the health of Noelle and Nicholas; that we will use the right words when answering the questions of the children and that we may be as gentle as possible yet honest; the enormous load that our 9-year-old, Nathan, must be feeling; the incredibly difficult decisions we seem to face on a daily basis; for the bond of our family to continue to stay strong through all of the trials we are facing; and most importantly that we always trust our God.

Thank you for making our life a part of yours.

We love you all,

Wendy, Van, Nathan, Noelle, and Nicholas

Tuesday, November 06, 2001 at 10:23 AM (CST)

Van and Wendy would like to express their appreciation for all the prayers, messages of encouragement and support, as well as cards that have been received. Also, they appreciate the help provided by family and friends for so many things.

Nicholas has been doing well in many ways following his surgery last week and thank the Lord for such a good day last Saturday - the sweet little guy was so happy and wasn't suffering any complications. Pray for him as he has recently had some problems with fluid retention, recently gaining 5lbs in one day (he went from 10lbs to 15lbs). He is receiving medication to control the fluid retention and his weight is now down to 11lbs 9oz. Problems with vomiting and diarrhea returned on Sunday and now continue.

Noelle continues to have good days and some not-so-good. Her mood swings are not as frequent and her speech is good. The steriods she is on to control brain/tissue swelling causes mood swings...this is her last day of steriods. Also, continue to pray for her during her daily radiation treatments. She has 8 more of which the last one will be next Friday. Of concern presently is that she has begun falling down again - she fell twice yesterday. This will be discussed with her doctor on Thursday.

Van and Wendy would like to mention the great blessing it has been for Van's Aunt Joy and his Mother Pat to be with Nicholas in Chapel Hill. This has been a tremendous help and enables Wendy to come home and be with Noelle. Continue to pray for travel safety for the Babers. Wendy is doing a lot of traveling this week and returns to Chapel Hill today.

Thursday, November 01, 2001 at 05:26 AM (CST)

Wendy and I would like to thank everyone for visiting this webpage. We could not go day to day without the love and support from all of you.

Praise the Lord that Noelle is continuing to have good days as radiation continues. Her night terrors and headaches are still present but not as frequent.

Nicholas had surgery yesterday (Oct. 31) in Chapel Hill. The surgery took longer than expected because his organs and tissues were more fragile than anticipated. The doctors were able to place the central line with no complications. The biopsies of the large and small intestines were performed. We should have the results by Monday (Nov. 5). After performing two tests on Tuesday, Oct. 30, the doctors felt that the Nissen Fundoplication was not necessary. The doctors were not able to perform the colonoscopy due to complications during the G-tube placement. Nicholas' stomach wall was punctured causing his abdomen to fill with air. The air dissipated on its own over several hours. Due to this complication, Nicholas needed to be in ICU for 24 hours for observation. As more updates develop, we will update the journal as soon as possible.

Again, thanks to all of you for your love and support during this time of growth in our life.

We love you-- Van, Wendy, Nathan, Noelle and Nicholas

Tuesday, October 23, 2001 at 11:10 PM (CDT)

Van and Wendy are so thankful for Noelle's good days. When she has good days she is like her "old self," when she has bad days, well, these are obviously difficult and the Baber's need prayer for her safety as she could injure herself when not in control. Also, severe headaches returned last week with her and in the morning she will receive an examimation while at her radiation treatment...pray that the doctor can provide some relief for her symptoms.

Yesterday, the Baber's returned to Chapel Hill to discuss findings and a plan for Nicholas. He will be admitted next Tuesday, October 30 and will be there until at least the following Monday. Some of the planned intervention will be a biopsy of both the small and large intestines, insertion of a gastric tube into his stomach, and also they will put a central line in his jugular vein to administer TPN. The central line is a very risky procedure, pray for him. His stage-three liver disease could go into stage-four in 1 to 2 months and a diagnosis is still needed for him.

Please remember Van and Wendy as they also try to manage and coordinate for Noelle's Make-A-Wish event. The "Make-A-Wish" foundation will be sending her to Disney World in December. Noelle, of course, wants her family to be with her. However, the family will most likely be divided up at this time as Nicholas' doctor has advised that it is not safe for him to travel and Wendy or Van need to be with him. Please pray also for this difficult situation.

Remember Noelle and Nicholas' brother, Nathan, as this is such an extremely trying time for him, in so many ways.

Also, pray for the Baber's in dealing with the insurance company as they will not cover costs associated with nursing assistance at home.

Thanks for prayers, support, love, and all assistance being provided by family and friends.

Tuesday, October 18, 2001 at 08:55 PM (CDT)

This initial journal entry for Noelle and Nicholas Baber is comprised of excerpts from two letters. These letters (Sept. 19, 2001 and Oct. 14, 2001) were composed by a mother of one of Nathan Baber's classmates at school, Amy Jeffers.

September 19, 2001 letter:
Nicholas Baber has been diagnosed with a rare liver disease...Van & Wendy arrange to take him to Chapel Hill for further testing and treatment. His disease is life threatening. The Baber's also learned this week that their five-year-old daughter, Noelle Baber, has an inoperable brain tumor. She has an absolutely amazing attitude about her illness and we all have a lot ot learn from her strong faith in God at this time in her life. She knows that she will be with Jesus and tells her mom that everything will be all right. God has given her strength that only He can give. Some of her symptoms have been that she has headaches, blurred vision, nausea, mood swings and she falls down a lot because of problems with her equilibrium. She has been given 6-18 months to live. This letter also mentions the Baber's plan to send her films to John's Hopkins in Maryland because the nation's leading neurosurgeon is there.

October 14, 2001 letter:
Noelle began her radiation treatments on Monday, October 8th. She wil undergo six straight weeks of radiation. Please pray for her during this time that the radiation will be effective and that she will not have many side effects, but especially that she will feel God's presence with her and His love for her through the whole thing. She has a port-a-cath that is inserted on Mondays and removed on Fridays. This has been quite traumatic for her and a great source of fear. Please pray that she will have peace about it and that she will know that the doctors intend to help her and not hurt her with this procedure. She is also having night terrors every night. Please pray that she will sleep uninterrupted and also that Van and Wendy will do the same; they are exhausted between getting up with a six-month-old and Noelle's night terrors. The Baber's took Nicholas to Chapel Hill on October 1st and had a very positive visit with the doctor there. He did not diagnose Nicholas with cirrhosis as was previously diagnosed. He does have stage three liver disease (stage four is shut down). They do not know what exactly is causing his liver to be diseased. His pancreas is also affected but they do not know which is causing which. He does not fit any diagnosis 100%. They will return to Chapel Hill on the 22nd to meet with the doctor again. They are very pleased with the doctor in Chapel Hill and they are pleased with Noelle's doctors here, so they plan to stay here for treatment for both of them. This letter also mentions that there are many expenses associated with these illnesses, that insurance does not cover the medications for Nicholas or Noelle, and also problems with the insurance company refusing to cover many necessary costs.

Please keep this family in prayer.

Thursday, October 18, 2001 at 11:24 AM (CDT)

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