When we were in NY this past December, the long-term follow-up doctor saw Walker and requested and echo and EKG. They contacted us in February and said his echo showed a possible rhythm problem and he needed to wear a Holter monitor for 24 hours. We got it yesterday morning and turned it in this morning and are waiting on the results. He wore it and did not complain. He has always been good when dealing with this medical stuff. Pray for no problems.

Walker has started taking karate again and he loves it. His instructor came up to me last night and said he is so smart. He told me his IQ had to be over 130. He also told me that he learns really quick and is like a sponge. I am so glad to hear this. Another miracle from God!!!

Walker started kindergarten last week and he is doing well. It is a little tough getting him to bed and getting him up in the morning, but it's getting better.

He is taking swimming lessons and he is doing GREAT! During the summer he would put his face in the water, but not his entire head and now he will and he is swimming. It is so amazing.

Walker was in a pageant and won! He is now Toddler Master Horry Independent. He was so cute! I'll try to post a picture. He was shy on stage when he walked up with his dad. He won every award except for Best Smile and that is only because he was a little shy. He is the most handsome thing in the world to me.

I don't know if you anyone remembers me talking about the camp we went to last year in Latta, SC...Camp Debbie Lou. They invited us back again, because they had some openings and Walker and I attended and had a great time. He fell in love with a volunteer there last year, Eryn, and still loves her to this day. She has come to visit since camp last year. She is going off to college this year, so pray for her. The camp is for kids in SC & NC that have had cancer and their families and it is so much fun. Please let me know of anyone that you might know of that would like to attend. They have horse back riding, bumber boats, go carts, crafts, fishing, swimming, and more.

Walker has been elected as the REEL KID at his school. I the district we live in, our local telephone agency, HTC, honors a child from each school that has overcome an obstacle in their life and Walker was chosen at his school. I thought that was a great honor. He will be on TV and we'll go to a banquet in May. I had to complete a form and give some history about what Walker has been through and as I went back and looked over his journal entries, I cried like a baby. He has been through so much and is doing just AWESSOME! God does answer prayers! I continue to praise the Lord for what he has done.

Walker is out of school now for Christmas break. He has learned so much in school. He knows all of his letters and sounds. Sometimes he gets a couple of the sounds mixed up like e and i. His handwriting has improved and he cuts with scissors really well. He brings home little books to read and he can read them by using the pictures. I usually don't have to help him, he just reads it to me when he gets home. It amazes me how well he's doing!

I took him to the doctor yesterday because he was complaining of his throat hurting and he had a little fever. Come to find out, he has strep throat. He started taking an antiobiotic and is doing great! I gave him some medicine for the fever and he has not had one since yesterday afternoon. Chris stayed home with him today and they have played and had a fun time.

Walker's birthday is September 1, but we had his party this past Saturday. Walker had a GREAT time! It rained most of the day, but it did stop for a while for him and the other kids to have fun. We had it a this place in Myrtle Beach. It is called the Hippo Slide. It is owned by Lack's Beach Service. It is a big slide that is blown up and you wet it and slide down. It is pretty high and fast. I had to ride with some of the kids at first, and they had a great time. Birthdays are very special to us. I really enjoyed watching Walker have fun and am so thankful that he is with us another year and I know that there are many more to come!

I started work today and I think I am really going to enjoy it. Everyone has been really nice and extremely helpful. Pray that I do a good job.

Walker's IV was no good on Friday, so they had to start another one and it took two sticks to get it. After his treatment was over they took it out for the weekend. He continued to have pain on Friday. Pray that they get a good IV this week on the first stick and that it lasts all week.

We had a fun weekend. We hung out with a couple of families we met here at the Ronald. They are all getting antibodies. Pray for these children, too...Timothy and Alexandra. Timothy is here because he relapsed.

We are so excited...we found out yesterday that Walker has been accepted into the 4K program. He was placed on a waiting list and there were enough slots available that he will be able to attend. I think it will be good for him. It will be tough on both of us the first few days I take him, but I know God will get us through it. I will return to work when we get home. Things are going to be really different when we get home, but these are good things. I'm so glad Walker is doing well and that we can get back to "normal". Please pray for both of us.

We went to camp last week with Walker. This was a new camp in Latta, SC for children in NC and SC that have had cancer and their entire family gets to go. It is called Camp Debbie Lou and you can check out the website at www.campdebbielou.com. We all had the best time. Walker got to ride go-carts, horses, and bumper boats, fish and slide in the biggest slip and slide I've ever seen. They had so many watergun fights it was unreal and the kids loved it. We made a scrapbook and other crafts that were so cool. We had a devotion every day and the food was unreal. I ate so much my tummy hurt. They made us feel so special from the time they contacted us until the time we left. I cried, as well as some of the counselors, when we left. We plan on keeping in touch with some of the counselors we met. Walker fell in love with one teenage girl that volunteered, her name is Eryn. He told me that he did not love his mommy and daddy anymore, that he loved Eryn. She was so sweet. They planned a date night for the parents at a four star bed and breakfast in Latta. The food was wonderful! I was a little concerned that Walker would be upset when we left, but we were the least of his worries, he wanted to stay and play with Miss Eryn. I was so thankful that he felt comfortable with the staff. Since we've been home Walker keeps asking me when we will go back to camp. Please pray for the camp.

Walker had a dentist appointment this past week and he had a great visit. His dentist said his gums looked great and that he had no cavities. I almost started crying because God continues to bless Walker. It is so amazing. We have such a testimony to share. Always pray that we never miss an opportunity to tell people! We love you Jesus!!!

On Thursday night there was a party at Dylan's Candy Bar for the kids at the Ronald. Walker loved it! One of the volunteers was playing with him and he turned around and told her "This is a good party". They got to decorate a chocolate mold, pick out candy they wanted to take home with them, dance, and eat pizza. This candy store is owned by Ralph Lauren's daughter, so you can only imagine how cool it is.

We flew Corporate Angels. The flight was delayed around 4 hours. We flew into Greensboro, NC and then rented a car and drove home. We did not get home until REALLY LATE! We were exhausted. Walker woke-up around 6:30 am on the morning we returned throwing up. He got up again at 9:15 am with diarrhea. He had more diarrhea, but is fine now. I thought he may have gotten a little bug or something.

They tested Walker's urine in NY and it was fine! Thank you Jesus! We are scheduled to have scans at MUSC June 22 and 23 and test for HAMA on the 23. Pray that all the tests will come back fine and that Walker is HAMA positive.

They had a prom at the hospital today. Walker wore a tuxedo shirt with a bow tie. He was the cutest thing and got everyones attention. He was voted as one of the prom kings. The girls wore dresses and had people there to do make-up and fix their nails. They really did an awesome job and the kids really enjoyed it.

Walker was screened this past Monday for the 4K program. I won't find anything out until June. I had a job interview yesterday. It went pretty well. They have to interview a few more people in a couple of weeks and then I should find something out. Pray that Walker gets into the 4K program and that I get this job if it is God's will. Please pray for our family as we go through this process of getting our lives back to "normal". It is a wonderful thing, but it is also hard for me to let go. He and I have been together so long and I just love him so much!

We had to get another round of shots this past week for Walker's re immunization. He did really well. He has had some red spots on the bend of his arm and on the back of his leg where it bends. I asked the doctor about it and he said it was eczema. I thought it was because my nephew and youngest niece have it and I know what it looks like. I've been putting some cream on it that the doctor gave me and it is a lot better. Praise God!

A number of people have asked me what HAMA is. It is an immunity to the antibodies. They know whether he is HAMA positive or negative by doing blookwork the second Thursday after treatment.

Walker has been doing GREAT! We are working on discipline. He does not want to listen and follow the rules. It is very hard for me to be tough on him, but I don't want him to be a brat. Please pray that we discipline him appropriately and have lots of patience. I just love him so much I want to do everything right. Please continue to keep us in your prayers.

We had a good trip home. Everything went well and we got home around 10:30 pm. We met a really nice lady on the plane trip from NY to Charlotte. It is so nice to meet pleasant people when you're so far away from home.

We went to the Ringling Brothers Circus with the Ronald last night. Walker loved it. It was sooo much fun. He got a clown mask and it is so cute on him. We took a picture. We'll post it when we get home.

His pain started yesterday at the flush and today a little before the flush. The pain lasted about 15 minutes. He had a little bit of fever today, but it went back down. Sometimes the antibodies can cause fever. Pray for no fevers.

I asked the doctor to look at the last HAMA test and see if we were close. She did look and we are not close, but they said that this can change. Please continue to pray for HAMA if it is God's will. We really don't want to come back to NY, but things could be a lot worse.

I ran into a girl here that I used to wait tables with while I was in college. She lived in Calabash, NC, but is now in Wilmington. Her daughter, Ava, has neuroblastoma. Please pray for them. We also met a great family from Florida. Their child, Cameron, has relapsed. Please keep them in your prayers. There is another little girl about Walker's age that we've seen up here a lot. Her name is Emily. She's from Brooklyn. When we arrived on Monday we saw them and I asked if they were getting more antibodies and she told me that she had relapsed and it is now in her brain. I started crying. I just hate it for these families. If you go through it once, that's enough. Please pray for this family also. I just keep praying and believing that Walker is cured and it will never come back.

We saw Barney at Universal Studios and they kept talking about using your imagination. For a minute in my mind I was imagining a world without cancer. Then I remembered that is what it will be like when we get to heaven. How awesome!

He is getting really excited about our trip to Disney! Keep us in your prayers.

We have to be at the hospital at 6:00 am on Monday morning. Walker is scheduled to have his 3 crowns at 7:30 am. Please pray that everything goes well and that they get the IV started with no problems. We found out that Walker has not developed HAMA yet, so we'll be back in NY at the end of March for another round of antibodies.

It is freezing cold up here. When we walked to the hospital this morning it was 12 degrees. My hands were cold even with gloves on. We're counting the days down until we go home.

I don't know if any of you watched the last round of Big Brother, but we met Will here at the hospital. He is a nurse here at Sloan in urgent care. He came and talked with us and we had our picture taken with him yesterday. Check out the new pictures.

The Ronald had free tickets to the Knicks game last night so we went to a Knicks game at Madison Square Gardens. They played the Hornets. Walker really enjoyed it. Samuel L. Jackson, LL Cool J, and Rowdy Roddy Piper were at the game.

He had to have a thyroid evaluation because I forgot to give him his lugol's solution before his last MIBG scan. These drops are given to protect his thyroid. I had the drops, but did not give them. The hospital usually reminds me, I'm not blaming them at all. I felt and still feel like a horrible mother. I realized I had not given them a couple of weeks after the scan when I saw them in the medicine cabinet. Pray that the evaluation will be fine. I thought to myself that cancer is bad enought, we don't need to cause anymore problems.

We started Walker's reimmnizations yesterday. He did great!!! He almost cried once, but he didn't. All he said was ouch! Praise God! I was really dreading this. His legs have been sore. We visited the Alabama Theatre last night with Andy's Special Friends and he wanted me to hold him. He said his legs hurt. The show was awesome! Walker really enjoyed it. We were able to meet the cast members after the show and have our picture taken with them. They were so nice and made us feel so welcome.

That night we went to a NJ Nets games with the Ronald. They played the Suns. We had good seats. Walker really liked it. There was a lot going on to keep his attention.

Dr. Kushner told us that if the scans and bone marrow tests in November come back ok, which I know they will, he wants the broviac to come out. We are very excited about that!

Walker visited the dentist today to have his front tooth painted. He did great. The dentist said that it was not a cavity, but it was in the beginning stages of a cavity. We go back in a couple of weeks to have his teeth cleaned and the tooth in the back will be painted.

Walker and I went to visit my sister in Columbia for a couple of days last week. He had so much fun playing with his cousins. Today we had lunch with Kersey Cannon's mother. Kersey passed away in July. Please continue to pray for her family.

We had to fly from Myrtle Beach to Atlanta first. When they began to taxi down the runway, Walker threw up all over him, the seat, and a little on Chris. We got him cleaned up and he was fine. We did not get to the Ronald McDonald House until 1:00 am this morning. Our flight was delayed in Atlanta yesterday. Walker took a nap in the airport and fell asleep in the car on the way to the Ronald. He was really good during the wait. The people in the airport were amazed.

The Ronald McDonald House provided food for everyone last night. They also had a clown there that made balloon hats for the kids and another man painted faces. They both did a great job and the kids really enjoyed it. Walker had a tractor painted on his face.

We had a fun weekend with Sherry and Dalton. We wish they could have stayed longer. It is so nice when people come visit, especially on the weekends. We went to Six Flags in New Jersey on Saturday with the Ronald McDonald House. Walker had fun on the rides. He rode them all by himself. Chris and Dalton had fun on the roller coasters.

We are counting the days down until we can go home. I am very thankful for the Ronald McDonald House, but it is not home. I thank God that we are only here for 2 weeks. Some people have been here for 3 years or more.

Pray for Chris and Kim Cannon, their daughter Kersey passed away July 9. Also, pray for Justin Trotter. He is from Anderson, SC and has osteosarcoma (bone cancer) and has relapsed. They took off his entire leg and he has disease in his lungs. They went in to remove the tumors in one lung and were not able to get them all. Pray for him and his family.

Our flight home was crazy. We were supposed to leave Newark, NJ at 5:15 pm and fly to Atlanta and the flight was delayed until 7:30 pm. This caused us to missed the flight in Atlanta. They had scheduled us to leave Atlanta and fly to Myrtle Beach at 11:30 pm. When we got to Atlanta this was canceled. We were about to go crazy! We knew that we did not want to spend the night in Atlanta, so we asked if there were any flights to Charleston or Columbia. There was a flight to Charleston, so thank God, we were able to get on it. It left at 12:30 am and arrived around 1:30 am. We rented a car and drove home and got home around 4:00 am in the morning. We did not have time to get our luggage in Atlanta and switch it to the flight to Charleston, so I had to go and pick it up the next day. I thank God that were are home now.

Bone marrows are going to be done. Pray that they will continue to remain clean. I am believing and having faith that they will.

We had a busy weekend. We went to Hershey Park in Hershey, Pennsylvania on Saturday. It is a lot like Carowinds, but I think they have more roller coasters. You will see pictures of Walker riding some rides. He loved the train and the fun slide. Chris enjoyed the roller coasters. On Sunday we went to a Yankees game. It was a great game. It is really nice to be able to do things like this. It makes time pass faster. Both of these trips were organized by the Ronald McDonald House.

We made it safely to NY. Walker was so excited that he did not have to ride in his car seat on the plane. Our flight was delayed 1.5 hours.

The audiologist told us that the hearing test indicated that Walker has mild to moderate high frequency (8000 Hz) damage in both ears. She said we would probably never notice it and that Walker would probably never be affected by this. They administered a different test that Walker has never been given. He had to put on a head set and press a button when he heard a sound and a bus would fill up with children. (This is kind of hard to explain.) I know my child is very bright, but I'm not sure if he was ready for this. We just thank God that his hearing is fine.

We had to go to the grocery store the other night and I started talking to a man and he wanted to pray for Walker. I love it! We prayed right there in the grocery store.

They had a prom here at the hospital for the kids. It was the neatest thing I had ever seen. They got dresses for all the girls and tuxedo shirts for the boys and decorated a room that looked better than my junior prom. Walker would not wear a tuxedo shirt. They had all kinds of food, a DJ, make-up artists, and jewerly. Some kids were getting there chemotherapy while they were all dressed up at the prom. It made me think about all they go through and it still does not get them down. They are amazing!

We ate at Subway the other day and when we were leaving a couple from Tennessee stopped us and asked us where a good place to eat was. We told them we really did not know and then told them why we were here. They said they would pray for Walker and started praying right there on the streets in NYC. I thought that was awesome.

Walker's hair is growing back. We saw a little bit of hair before we left for NY. I love it! I can't wait to see what it looks like.

Walker has become a daddy's boy. He wants Chris to do everything for him. He wants Chris to carry him everywhere he goes and do everything else for him. Pray for Chris! Pray hard!!!!!!

We got out the earliest on Friday than we have any other day during the 2 weeks and it seemed like Walker recovered the quickest on this day as well.

Walker is scheduled for a hearing exam, bone marrow aspiration/biopsy, MIBG, and radiation therapy next week. Pray that there continues to be no hearing loss and that they continue to find no evidence of disease in his bone marrow and from the MIBG. We are believing that everything is going to be fine and I want you to do the same. Also, pray that the radiation therapy goes smoothly and that Walker is not hungry during this time and will eat when he can. He will get radiation twice a day for 7 days and will be put to sleep for the radiation and will not be able to eat or drink during certain times. The radiation should start on Thursday.

Monday - May 17 - *Radiation simulation and bone marrow aspirations/biopsy

Tuesday - May 18 - Hearing exam and MIBG injection

Wednesday - May 19 - MIBG scan

Thursday - May 20 - begin radiation therapy

Friday - May 28 - last day of radiation therapy

*Radiation simulation is when they set the machine and mark Walker's body. He will be put to sleep for this also. Keep praying!

A number of people have been asking for the address to the Ronald McDonald House. We can be reached at:

The Ronald McDonald House

405 E 73rd St.

NY, NY 10021

The Brighams - Room 511

Walker is doing great! He gets his finger pricked every day except Thursday and does not cry a bit. That's a miracle. He is also taking his shot now without fighting. Praise God! I hated having to hold him down for that. We'll probably be in clinic all day today because they want us to hold the shot until they check Walker's counts on Monday because they could be high and Walker would not need it, but he did. We gave the shot around 10:45 am and now we have to wait an hour before the antibodies start. It will be a long day.

Walker's pain didn't start today until the flush was running and he got less medicine today. Praise God! The pain lasted around 15-20 minutes.

We walked down to Central Park yesterday. That place is huge and their is so much going on, it's amazing.

Yesterday was pretty intense. The antibodies were pretty painful. The pain lasted around 30-40 minutes-it came and went. They gave Walker dilaudid for pain (about every 15 minutes). When they gave him the pain medicine it would take the edge off. He would beg for more medicine as it wore off. He complained of pain in his back. He wanted me to hold him and then he wanted to lie down and me hold his hands. I did whatever he wanted me to do. Whenever it was over he said my back feels better. He slept a lot of the afternoon because of all the pain medicine. I told them that he does not sleep well at night and they told me he probably would sleep all night because of all the pain medicine. They were wrong, he still woke-up during the night like usual. Pray that he sleeps better during the night.

We had to start giving Walker a shot on Wednesday to prepare him for the antibody treatment that will start Monday, May 3. He will get his last shot on May 14 (17 days) until the next round of antibodies. He hates it and I hate giving it to him. Pray that he tolerates it well. My husband holds him and I give him the shot.

We leave for NY tomorrow. We have to drive to Augusta, GA (4 hours) to get on the plane (Corporate Angels). We had to drive to Southern Pines, NC last time to get on the plane. It is so hard for Walker to be in the car for that long. Pray that he is content in the car and that we are able to entertain him. If anyone has any frequent flyer miles you'd like to donate, we would be so grateful. I called Angel Flight yesterday to see if they can give us some flights from Myrtle Beach.

The antibody treatment starts on Monday and last for 2 weeks. Walker will then get 7 days of radiation. We'll probably be in NY for about 4 weeks. Pray hard! They say the antibodies are painful. Please pray that they are affective and that they are able to control his pain.

Walker has been begging to go home this afternoon. I just asked him why he wanted to go home and he said to see his daddy. God has been so good to us today. Walker and I have had fun and we both have been much more content. We could not do this without God and your prayers.

We arrived in NY last night around 8:00 pm. We had to be in clinic at 9:00 am this morning. They just injected the nuclear medicine at 1:30 pm for the bone scan, which is scheduled for 4:00 pm. We are at the hospital right now and Walker is having fun playing in the playroom. They decided to stop Walker's TPN. Please pray that the scans and bone marrow aspiration and biopsy will show no cancer present. I am praying and believing that they will be fine! Also, pray that Walker is content and that we get home safely.

We have decided to go to NY for the antibody treatment. We will leave on Monday (April 12th). We will follow the schedule listed below:

April 13th - arrive at clinic at 9:00 am, 1:00 pm - injection for Bone Scan, and 4:00 pm - Bone Scan

April 14th - 9:30 am - CT Scan and 2:15 pm MIBG injection

April 15th - 3:30 pm - MIBG Scan

April 16th - 9:30 am - bone marrow biopsy and aspiration

We will return home after the scans and once they are read, will return to NY for the antibodies.

We are now trying to decide if we should go to NY to get the antibody treatment or if we should stay here and see if we are chosen for the antibody treatment at MUSC. We need to make a decision as soon as possible. Pray that we make the right decision and that it slaps us in the face.

The wound care nurse came in and said that Walker's bottom did not look as bad as she had expected. She told me that the best thing for us to use would be the CarraFoam, which is a cleaner and ilex, which is a skin protectant paste. You don't take the ilex off each time you change his diaper because it can pull the skin off especially since his is so sensitive. Keep praying!!!

He continues to drink. He wants a sip of mountain dew and then a sip of water. I just thank God that he is still drinking!!!

Giving him medicine and a bath are major tasks. We have to hold him down to give him the tylenol and mouthwash. The last time I gave him the mouthwash this morning it made him throw up. It has to be given 4 times a day.

The schedule my husband and I have right now is really working out. It is such a blessing to have him and I thank God for him. I see a lot of women here at the hospital that have to do it by themselves.

MUSC - Children's Hospital

171 Ashley Avenue

Charleston, SC 29425

Room 746 - Walker Brigham

He still does not have a fever and they tested his diarrhea for c diff and it came back negative. Praise God! Since the test came back negative they will give him some immodium and start flagyl to prevent c diff from developing. He is on so much medication right now.

The nurses here have been great. They help out any way they can. When Walker begins to vomit you have to sit him up in the bed and he fights against you and it is really hard to hold him up. I thank God that my mom is here to help me. My mom had to help me give Walker a bath while the nurse changed the bed.

Chris and I have to wear a mask and gloves in the room at all times. (The only thing we can do in the room is sleep). It does not bother Chris as much as it does me. I don't want to complain because Walker is going through a lot more than I am. I know it will all get better. This is only temporary. Pray for us both.

Walker is going to have to get platelets again today. They said he may have to get them daily. They are going to start TPN today, which is intravenous feeding. He hasn't had a fever since 8:00 pm last night. Praise God for that!

We moved into the transplant room at 12:50 pm. He cried to go out into the hall or anywhere else except this room. The stem cell transplant started at 3:20 pm and ended at 3:40 pm. They told us that the stuff they preserve the stem cells in would probably make him vomit, which it did. They told us that the stuff they preserve the stem cells in smells like garlic. My husband said it smelled like squid on the pier and that is exactly what it smells like to me. He threw up twice after the transplant was over. The resident and nurse were just in here and said they could give him more nausea medicines. His temperature is now 103.2. He threw up the tylenol they gave him and are going to give him more. There is no such thing as IV tylenol. All the nurses say that this would be their first invention if they could choose one.

Walker keeps telling me he wants to go home. We will be so glad when that day comes.

We will be admitted on the 7th of March and chemotherapy will begin on the 8th. It will last for 4 days. He will get the stem cell transplant on the 15th of March. I think that is the day we will go into the transplant room. We are supposed to meet with the transplant coordinator tomorrow. Pray that his counts come up quickly and he tolerates the chemo well. This is going to be the strongest chemo he has ever gotten, because they want to wipe everything out.

The medicine Walker is getting to increase his appetite is working! I praise God for that. I pray he will put a few pounds on before the transplant. He often wakes up in the middle of the night and wants to eat, so my husband and I get up and get whatever he wants. We just want him to eat. He does not sleep well at night. He talks a lot in his sleep. I wonder sometimes if he is dreaming.

They are treating him for a sinus infection because the x-ray of his sinuses was blurry. The medicine is awful. It leaves a after taste in your mouth. I also have to give him potassium because it is low. I hate having to hold him down and give him medicine. Please pray that he tolerates his medicine well and will take it willingly.

I worked with the school system before Walker got sick. I have to make some decisions about my employment for next year. Please pray that I make the right decision, what I should do is clear to me, and have peace about it.

Walker started acting tired on Thursday night. On Friday morning when he got up he only wanted to lie on the sofa and sleep. I checked his temperture and it was 100.1 axillary at 9:30 am. At 11:30 am it was 99.6 axillary. I called the clinic and they told me to bring him in.

Walker threw up on the way to the hospital. We were placed on isolation because of the RSV. Respiratory therapy has been assessing his lungs. He has not had to have a breathing treatment since we've been here. They said his lungs sound great. He only had to have one the day we were at clinic. He has been doing good but often says he wants to go home. He is able to leave the room but has to wear a mask. I praise God that he does not mind wearing the mask. I told him we had to wear the mask outside the room because of the germs and he said "I want to go home. This place is dirty." I died laughing. He acts tired and does not want to walk around as much as he has before. He wants to be held or either ride in the wagon. He had to receive platelets twice and a blood transfusion once. We are still on isolation and his counts are still very low. He is scheduled for a bone scan this Thursday. They did another test for RSV today because if he is still positive he will not be able to have the scan done. You can't go down to nuclear medicine if you are on isolation. Pray that the test comes back negative. If it does, we will still be on isolation because there are a lot of false negatives and they have to culture it for 5 days.

He has not been eating much and not sleeping well at night and he wants me to hold him a lot while I'm walking around (he doesn't want me to sit down). He wakes up quit a bit at night. Please pray that he sleeps better and eats more. We have to go to clinic this Thursday and I am going to talk to them about giving him something to increase his appetite. He is so thin.

The Joe McGarry fund raiser they held this past weekend was awesome. I met his fiance and she was such a sweet person. My heart goes out to her. We are so thankful for what everyone did. God's blessings never stop.

Today is the first day we have not had to give him pain medicine. He did not get a lot of sleep the night before we left, so we are all exhausted.

When we got home Carolina Forest Community Church had placed a WELCOME HOME WALKER sign with balloons. That was really nice of them to think of us.

I want to thank God that we are coming home on Sunday. We can't wait to get home. It is sooo cold here. We tried to get out a little yesterday. We went to Time Square for just a few minutes. We took a taxi there, ate lunch, and then come back because Walker was saying that it hurt, and also we had no stroller. When we got back another couple here asked us to go to a huge candy store with them (Dylan's Candy Bar). We borrowed a stroller and went. Walker enjoyed pulling the levers that allowed the candy to come out. Today we went out for lunch all bundled up and did not stay out long because it was too cold even with a lot of clothes on. It is a lot colder today than it was yesterday.

Walker did not have to go to the Step Down Unit because all of his tubes have been removed and he is doing so well. He is in a regular room. We are actually having to share a room with another family with a child that has neuroblastoma. His surgery is scheduled for next Friday. Pray for them.

They are now giving Walker codeine for pain. It seems to work really well. Pray that the pain will soon be gone.

We visited the play room a few minutes ago and he actually walked around some. He is doing wonderful! God is awesome!!!

The nurses in PICU told me they were talking about Walker's case and his amount of time in surgery was really short compared to other children with neuroblastoma, which is so unusual. That is just a blessing.

We met a family that has a 20 month old daughter with Stage 3 neuroblastoma. She had her tumor removed yesterday and it was really big. Dr. LaQuaglia thinks he got it all. Praise the Lord! Pray for this family. We met another family of a four-year-old female that has TSS. Pray for them. We met another family with a daughter that has cancer in her uterus and had it removed. Things look better now than they thought they would. They thought she was going to lose her bladder but she did not. Thank God for that!

Walker went through the surgery well. He begged for something to eat and drink before the procedure. It was so hard not feeding him because I am usually always trying to get him to eat. They took him back around 12:30 pm. They aspirated bone marrow first. They then went into his left side to remove the tumor. He also removed some lymph nodes. Everything he removed was about the size of 2 walnuts. The surgeon said it looked like the chemotherapy was doing what it was supposed to be doing and he got everything out!! Praise the Lord! I don't know if I have mentioned before, but the CT showed a spot on his liver. Dr. LaQuaglia said he did not see the spot, but did a biopsy of his liver just to make sure. He was not concerned about it. He said everything went great. We got to see Walker in recovery around 6:30 pm.

We are now in PICU at New York Presbyterian. When he gets better they will move him to the Step Down Unit at Sloan-Kettering. The doctors said he is doing wonderful! I know it is due to all of the prayers. My husband fasted today for Walker. That really touched my heart. He and I both love him so much!

Walker started waking up a few minutes ago and they had to give him something to calm him down. They said he could possibly come off of the ventilator tomorrow morning or evening. He is so awesome. I know he is going to be fine because he is in God's hands. We should know the results from the bone marrow aspiration on Wednesday. The biopsy of the tumor did indicate neuroblastoma. Please continue to pray for a quick and comfortable recovery.

We went to the clinic and met with the surgeon, Dr. LaQuaglia and the pediatric oncologist, Dr. Kushner. They were great!!! We had to wait a long time. We arrived at 9:15 am and left at 4:00 pm. Walker enjoyed playing in the playroom. There were kids everywhere. I cried again when I spoke with the child life specialist and nurse practitioner. We were talking to the surgeon about the surgery and we made the statement that parents have no choice. They have to have the tumor removed. We said you have to do what you think is best and the surgeon then pointed up and my husband said leave the rest up to God and the surgeon agreed. Right then, I knew we were in the right place. The staff at Sloan-Kettering say that he goes and prays before surgery. His hands are a gift from God and I am so thankful that God has us here and has blessed this man this way so he can help children.

I have met a number of other parents with children that have neuroblastoma. It seems like every child has multiple tumors and tumors that are larger. I thank God that Walker has only one and it was small. Most of these children I have met are getting the antibodies at this point in time.

Walker played in the playroom last night at the Ronald McDonald House and is playing as we speak. I am so thankful he is so happy. I also thank God that we had a safe flight and everything is going so well.

We were talking to the surgeon at MUSC today and he was suprised that Walker was stage 4 because his tumor is so small, about the size of a quarter, but not perfectly round.

When we got home my husband was holding Walker and told me he felt warm. I checked his temperature and it was 100.9 axillary. I called the doctor and he told me to check it again in 30 minutes. When I checked it the second time it was 101.1 axillary. I spoke with the doctor again and he told us to take Walker back to MUSC. We arrived around 12:30 am. They checked his temperature when we arrived and it was 99.2. This is what usually happens, he has one at home and does not have one at the hospital. I thank God that he did not have one. We were not able to come home until December 31. The gave him antibiotics and did cultures just to make sure. Better safe than sorry!

His nose started bleeding a little on Christmas day. The day after Christmas it bled a good bit. We went to MUSC to get platelets and Walker ended up needing a blood transfusion also. We came home on Saturday, December 27. Everything went well.

About a month ago they told me Walker's stem cells were clean. I was under the impression that they were clean before the purging. I spoke with the doctor yesterday and she gave me a copy of the reports from LA. They tested a sample of cells harvested the first day and found 3 tumor cells. They combined the cells from day 1 and 2 and tested those cells and found no tumor cells. They then purged all the cells and found no tumor cells. I thank God that they did the second harvest and did not give him the cells from the first harvest when he was in the unpurged group. I was disappointed and cried when they told me that tumor cells were present from the harvest, but I have to keep the faith and keep praying. The doctors do not know, only God knows. God is in control.

The chemotherapy started at 11:00 pm on Friday night. The first chemo was etoposide. It ran for 2 hours. They checked his blood pressure every 15 minutes while this chemo ran because it can cause your blood pressure to drop. They then gave Walker mannitol for 15 minutes before they started the cis-platin. This ran for 1 hour. He was then given mannitol for 6 hours. This chemo can cause kidney damage so fluid intake and output is closely monitored. The mannitol made Walker urinate.

We spoke with the resident when we were admitted. We told them the schedule of nausea medicines to give Walker that worked best for him. When Walker got his first treatment they ordered one medication to be give only before chemotherapy. This did not work for Walker and they switched it to every 8 hours. We told the resident this and he still wrote the order to just give it before the chemotherapy. We realized all of this when Walker woke up at 8:00 am vomiting. He vomited 4 times. It took them until 10:30 am to get him the medicine. We were so frustrated. After that he did not throw up another time at the hospital. He did throw up last night around 3:40 am because when I gave him some of his nausea medicine he spit it out and I didn't know how much he swallowed.

Santa came to the hospital on Monday and Tuesday. Walker really liked the Santa he saw on Monday but he was not fond of the Santa he saw on Tuesday.

We thank God we are at home. Walker and I were so ready to get home. I don't sleep very well at the hospital, especially since they are in and out of the room during the night. Walker was like a different child when they disconnected his IV. We left around 1:30 pm on Tuesday. We would have left sooner but Walker had to get a blood transfusion. It doesn't matter how low his hemoglobin gets or what type of medicine he gets, he does not stop. I thank God that he is full of energy.

Santa is coming to our house tomorrow, before he goes to the day care. The director of the day care he attended arranged that.

My husband and I are so touched by what people have done and continue to do for us. When Walker was originally diagnosed a friend of ours, Deb, did a climb for Walker. This involved using a type of machine for exercising and it is really hard. People gave her money to do this. What a great friend.

Back in October a pancake supper was held for Walker. It was awesome. It was held at Harry's Pancake House in Myrtle Beach. My husband's cousin, Melissa, and her husband, Spencer, organized everything. Everything was donated and we did really well. Children and adults volunteered to wait tables and people donated items and meals for a silent auction. Melissa's oldest son Cameron was an awesome waiter! Melissa and the owner of Semper Fi Painting organized a softball tournament that was held November 1. It was really cool. There were 10 teams. We had t-shirts printed up with Walker's picture on them. Some ladies in the community had a bake sale. My husband's mom and dad sold hot dogs, hamburgers, BBQ, and chicken bog. We took Walker out for a couple of hours. He loved running around outside and eating the hot dogs.

Sonic sponsored supersonic night and the Coastal Football team was there. We met a lot of guys and Coach Bennett. He is a great man with strong faith. We got a football from them signed by the team. Really neat! We'll post pictures on Walker and the ball soon.l
I was working in a small school district (which I love) as a school psychologist when Walker got sick (Dillon III in Latta, SC). They have been so awesome and supportive. The students at the middle school are doing a special project to raise money for Walker and us and to learn about neuroblastoma. When I found out about what they are doing I cried and called my sister and told her and we cried together. Some kids have written Walker letters that I will share later if I get permission. We really appreciate what the school is doing. Someone in the district also got us an autographed football signed by Tommy Bowden and the Clemson football team. Isn't that cool?! Some pictures will be posted on the website with Walker and the ball. We always hear about bad people in our society today, but there are a lot of good people and I thank God for those people.

I have started reading a book titled THE PURPOSE DRIVEN LIFE. The scripture verse for today is very comforting. I AM YOUR CREATOR. YOU WERE IN MY CARE EVEN BEFORE YOU WERE BORN. ISAIAH 44:2. It is comforting to me to know that no matter what we are going through, God will take care of me, my husband, and my sweet baby boy Walker. He was taking care of us even before this started!

Walker's counts are still low. Home Health is coming this Friday to check his counts again.

His eyes are really red. He saw an ophthalmologist and he said that his eyes look viral. This happened before in October when his counts were down. Pray that they clear up and nothing else develops.

God continues to bless us in so many ways. They had a food pounding at our church yesterday and we got so much stuff. I praise God for everything he does.

We won't go to clinic today, we'll go on Wednesday to check his counts again. Please continue to pray for us and pray for 2 boys that we have gotten to know in the hospital. I don't know if I can mention their names but God knows all about their situation. We love you all!

I was expecting his counts to be very, very low, but they were actually high. The nurse practitioner said it could be due to the GCSF and the fact that he had an extra week to recover because of the second stem cell harvest. She did not seem concerned and said they would drop. Home health is going to draw labs this Saturday and we're supposed to go to clinic again on Monday. My husband and I were concerned about his counts not dropping. We felt like this time would be like the others and they would be low. Anything different makes you worry. We had to remember that Walker is in God's hands. We praise him for all he has done and that his counts are high. We're not going to worry and think negative.

After he completed the treatment he got a blood transfusion. It was over around 11:30 pm and then we went home. They told us we could leave that night or the next morning. We were ready to get home. We got home around 1:30 am Monday morning. We thank God that Walker is doing so well.

If I have calcualted correctly Walker's 5th treatment will begin December 11, 2003.

No matter how many times we change his diaper he wets the bed. Last night I had to change his shirt and blue pad 4 times. I hate it because it gets him up, but he usually falls back to sleep. He is so hard to get to sleep. Last night we layed down around 9:00 pm and he didn't fall asleep until 11:30 pm.

The doctors said we should go home Sunday night unless he needs a blood transfusion and then we will go home Monday. I bet he will need a blood transfusion because he usually does.

We began the 3rd round of chemotherapy on the 22nd of October. It was a totally different chemo than the two treatments before. It can make you more nauseated, which it did. Walker threw up a few times even with the nausea medicine. It still did not stop him.

We were discharged on October 26th. On the way home Walker threw up 3 times. The second time it had a little bit of blood in it and that freaked us out. We called the doctor and they felt like that was normal. Walker threw up about 3 days after the chemo was discontinued. None of this ever stopped him.

Walker's nose bled a little on November 1st. We called the doctor and there was no concern. It bled again on the 2nd and we called the doctor again. They had us come in and get platelets. We stayed overnight and then went home.

We found out the results of the bone marrow aspiration. His bone marrow is clean and the biopsy showed that there is only 5% on Walker's right side. We praise God for that!!

The doctor called us to tell us the results of the stem cell harvest. Walker was in the unpurged group at this point. Out of 2 million cells sent to LA, 2 looked suspicious and they did not want to take any chances so they would have to harvest again and change him to the purged group. They said these 2 cells were not tumor cells. They could have been damaged from chemo. They just did not know. We were very disappointed and scared. My husband told me not to worry and get upset because we know that God is still in control.

We went in this past Sunday (October 16) for the harvest. We hated to put him through that process again. While he has the line in he cannot walk. He did well. He complained that it hurt and they gave him tylenol with codeine and that helped. They put the femoral line in on Monday morning between 12:30 pm and 1:00 pm. They did not begin the harvest until 3:30 pm. It took forever to decide if he would be harvested on the floor or in PICU. They ended up keeping him in PICU. My husband and I were getting very frustrated. We just wanted to process to begin so Walker could eat and drink. He did not eat until 7:30 pm when the harvest was over. Walker was miserable. They gave him something to relax and he fought it but finally gave up and slept. I prayed that God would relax him and he would rest and he did. He slept well through the night. They were not able to tell us how many were collected because it was too late in the day and everyone had gone home. On Tuesday they gave him an oral medicine to help him sleep. He threw it up. He did well and fell asleep on his own. This was an answer to prayers. They told us 10.5 million cells were harvested on Monday. After the harvest on Tuesday a total of 16 million cells were harvested. They wanted 12 million. I thank God that they got all they needed and more. They did another echo and EKG and then took the line out. We had to hold him down when they took the line out. I think the worse part is getting the tape off.

Out of nowhere he will say "Walker get better". A friend of ours said he is prophesying.

A Fish Fry was held on the 10th of October. It was so overwhelming to see all of the support. When I drove up and got out of my car all I could do was cry. God keeps pouring out his blessings on us. Praise the Lord!

Walker had a little fever the night of 10th. (100.6). We called the doctor that night. They did not want to admit us, but we pushed it because we did not want to have to get up at 2:00 am and have to drive to Charleston. Walker had no infections. When we got there his fever was normal. His eyes were red so they treated him for pink eye. They required him to stay in his room to prevent other children from getting it. That was a task. Walker never wants to stay in his room.

We were discharged on Monday, October 13, 2003. They told me I had to come back every morning so they could do blood work and see if he was ready for his stem cell harvest. We came back Tuesday morning prepared to stay in a motel for a few days. When they did his blood work they thought he might be ready to harvest the next day. I thank God we did not have to stay in a motel. They admitted us on Tuesday the 14th of October. They put Walker's femoral line in the same day we were admitted. I hated that thing. It was huge! Walker did well. We held him and pulled him in the wagon. They harvested Wednesday the 15th. He did not sleep at all. They gave him something to relax. The nurse said if they would have given her what they gave Walker, it would have knocked her out. He would constantly say "Walker get better".

Walker also had another echo and EKG done they and showed no heart damage. Praise the Lord!

They needed to do a 24 hour urine. They tried to put a catheter in 3 times. We got very frustrated because Walker screamed. They called a urologist and he got it in on the first try on Saturday the 6th. Praise the Lord! They also did an EKG on Friday to get a baseline because some of the chemotherapy can damage your heart.

They removed the catheter on Sunday the 7th. On Monday they did more blood work and also injected a nuclear fluid into Walker's body for a Bone Scan. He also had an echo done of his heart. His broviac was put in on Tuesday. I hated this day because Walker's beautiful little smooth chest would now have a tube coming out of it. I was so scared I would not know how to care for it or it would get infected, but so far the broviac has not been a problem. I came to the conclusion that we would have to do whatever was needed to make him better. They also aspirated bone marrow out of both hips on the 9th.

The nurse had to change Walker's dressing covering his broviac 24 hours after it was inserted. It also has to be changed once a week. Of course he cried. I hate seeing him in pain.

The nurse started premedicating Walker with nausea medications around 10:45 pm on Wednesday night and the chemotherapy began a few minutes after midnight. A resident we loved came in the room before the chemotherapy and told us he was reading a book titled The Purpose Driven Life. He explained to us and told us that everything happened for a reason. We both agreed with him. He asked if he could pray with us. That just thrilled my soul. Before the nurse hung the chemo she also asked if she could pray with us and of course we said yes. God was and still is all around us. It was a very emotional time that night. We all cried and cried. My husband got very little sleep. All he could do was lie in bed and rub Walker's beautiful head. We hated to put this poison in his body, but we knew we had no other option. We asked my mother to stay with us that night. We did not know what to expect. We wanted to get this monster out of his body. My husband searched the BIBLE for all the different healings that Jesus performed. Jesus is so awesome.

He did well with the chemotherapy. He threw up a few times. When he would throw up he would shake it off and continue to play.

Walker was done with everything around 12:00 noon. We had to stay 24 hours after chemo to begin the GCSF shots. These shots help bring Walker's counts back up.

We came to clinic on Wednesday, September 17. The blood work showed that Walker's counts had dropped. He was also injected with a nuclear medicine for an MIBG scan. We had to wait 3 or 4 hours before the scan would be conducted. We went to the park and ate a lunch I had packed. We did not want Walker to touch anything. We were so scared he would get other germs and get sick. We had to go to Charleston on Thursday and Friday for a 24 and 48 hour MIBG. On Friday the 19th we were getting in the car to go home and Walker felt warm. I checked his temperature and it was 100.1. I called the clinic and they had me go over so they could see Walker. They ended up admitting him because of the little bit of fever and his bottom had broken out so bad from the chemotherapy. He would cry when he urinated his bottom was to red and irritated from the chemotherapy. I let him run around with no diaper. He had no infections, but they gave him antibiotics because of the breakdown of his skin on his bottom.

We had a few hours before we had to be admitted to the hospital. We ate lunch at Ryan's and went to Wal-Mart to get diapers. We let him run around and do whatever he wanted to do.