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Click here to go back to the main page. Tuesday, May 26, 2009 8:14 AM CDT Well school is almost over. Derek is finishing up a cursive writing class and then will be done. He is very focused on swimming and playing outside. I cant blame him. He has worked so hard this year and has come so far. We are still working with his new Dr on getting his meds. at the right dose. He is doing will with them. We are waiting on a call to see how he did on all his testing. Our goal is to let him go to class by himself at church. It seems like a good first step for him. We are about to finish our soccer season. Derek will let us know every morning he is not going to soccer today. His coach has been praying that he would just kick the ball one time. Saturday all our prayers were answered. Derek had the opportunity to kick the ball about 5 different times. We were all jumping, cheering, crying, hugging,.......It was a great feeling. It is hard to explain what it is like to just see him in a uniform and out on the field. Kicking the ball was bonus from above!! Hope you all have enjoyed this spring. We thank you for all your prayers.
Monday, April 27, 2009 8:44 AM CDT OK, so it has been a while since I updates. Caringbridge changed their site around and I could not figure out how to use it. I am so not a computer person. Shawn finally had a minute at the computer this weekend and figured it out for me. Derek's ear has healed and surgery was not required. Thank you, Lord!! He is still in soccer but not that interested in it. We had a good ref this past Saturday that got him involved in throwing and kicking the ball back in when it would go out. That is the most he has done all season. I will say for the most part he is going in the same direction the ball is for the first half of the game. When he is done, he is done. I am proud of him and understand that it is not that easy on him. We made it to NY for the survivors party. It was very encouraging to see other children that had survived Neuroblastoma. The Dr's, nurses, social workers....were all there and happy to see him. He had no idea who they were or why we were there. His birthday weekend was busy but he loved it. On Friday we partied with Shawn's family at his Granparents house. Derek had already planned that and told us about it. He was going to Grandma's, eat cake, and open presents. He even told us what would be in the gifts, swim trunks, shirt, shorts......We had our church Easter party the next day and he enjoyed hunting eggs. We are gaining ground on his attention issues and short term memory loss. I will explain more when I get more details. All I can say for now is that we have a new Dr. and she is a christian. I am so thankful God put her in our life. She is ready to help us in more ways than one. She asked to see Derek by himself before she talked to me. I was nervous because he will say yes to anything to get the conversation to move on. I could not imagine what he was telling her. When she came out she was in shock. He had written dinosaur in cursive on her marker board. Yes, that's our son. Just when you think nothing is clicking in his brain he comes up with a dandy like this. School is almost finished. I will be ordering his 2nd grade books next week. He is in the bathroom floor watching a movie right now. He got up this morning with vomiting and diarrhea. Not sure if it is a virus or food from yesterday. Sometimes his stomach does not do well with popcorn when he eats it in the evenings. We are playing it safe and watching movies in the bathroom. Kayla's big news for the week is that she now has a piano in our living room. Shawn's aunt let us use hers. Every time she walks past it she plays something. We are very thankful God gave her this talent and enjoy listening to her. Thank you all for praying for us. Wednesday, March 18, 2009 3:29 PM CDT Now that March is here Derek is looking for spring. He has also learned his birthday is in April and that is soon. We visited his cancer Dr in Charleston a few weeks ago. She was very pleased with him. We will send urine to NY in April. Our main concern while we were there was the after affects of his chemo drugs. We were able to get in with his ped. neuro. psyc. the next week. That was a good visit also and she has referred us to who we need to see. Derek's appointment is not until late April but I am hoping we get a call to come sooner. We want to meet his needs and stay on top of issues that arise. He also started soccer through a local church league. He cried the first 30 minutes so we skipped the last half. I think a combination of things led to his melt down. We are trying to help him and will try again next Monday. He is getting over a cold/sinus... Last Wed. night he cried all night but could not tell us what was wrong. I was rocking him the next morning and his ear drum ruptured. He was a mess. I am so thankful two different Dr. saw him that day and gave us meds. We go back in two weeks to see if it has improved. Kayla was my right hand man the entire day. She sat in the back seat with a tissue catching the blood and yuck as I drove. She is such a good girl. Derek trust her and that helps so much. We are heading to NY in a few weeks for a survivors party. I have mixed feelings about going back but it is hard to explain. Thank you all for praying for us.
Tuesday, February 24, 2009 10:31 AM CST February has come and gone. We spent most of it inside. Shawn was working 7 days/10-12 hours for several weeks so if the weather was bad we were home. Derek did well with the routine of school and minimal interruptions. We did have some days of sledding. He enjoyed the first 10 minutes every time and then was finished. Co-op continues to be a struggle for him. Besides the noise level he does not understand much of what is going on. Gym seems to be the worst. He comes in my classes at church which is older children than him but he is for the most part calm. I feel bad that he is not in with his class but he would not understand the lessons anyway. We have an appointment with his Cancer Dr in Charleston soon. I am excited to run some things by her. I know she will want us to see his psychologist. The drugs that he had to take during treatment all have long term side affects. I think we are picking up on some of them that Derek may have. I will post more if I find out anything. Thank you all for your prayers and support. Every day is a new day. With God's help we enjoy learning all we can. Special thanks to Lynn for all your love and prayers. Monday, January 26, 2009 9:18 AM CST Hope everyone had a nice New Year's Eve. We tried our first over night New Year's Eve party at church this year. I had in my head that after midnight everyone would get cozy in their sleeping bags and wake for breakfast the next morning. Only two children slept the entire night. Yes, one was Derek. He took all he could take of a loud, children running wild party and by ten he was on my lap fighting sleep. Him and another little boy slept in the corner of the kitchen all night. Kayla made it all night but crashed as soon as we returned home the next morning. Derek woke the next night with the lovely virus going around. We rotated through that and a week later began the new year. He continues to learn and amaze us. He is trying to put more sentences together. I feel like if we ask him something we can get an accurate answer out of him. We are in most days avoiding all the germs floating around. Co-op has started back. He has gym, art, music, science and world cultures. Derek just does not do well in public, YET! He is doing much better at church. Class is structured there and calmer. Some days are better than others. I think it helps that some of the kids are getting use to him and are willing to interact with him. He longs to be a part of the crowd and to have friends. It hurts him and me when he is rejected because of his limitations. Shawn is working long hours daily. None of us like to be seperated from him. Derek tells me, "Daddy will come home and play with Derek. Say yes, Mom, OK." Derek is excited that Shawn's birthday is in February. He wants to buy him slippers because Dad is the only person in the house without slippers. We are hoping to play in the snow some time this winter. I will have Shawn put on a picture if we get to play out this week. Thank you all for praying for us. Hope 2009 is a great year for all. We love you all. Monday, December 29, 2008 12:39 AM CST Hope everyone had a nice Christmas. Derek made it through the Christmas play. He was a cow and said his part well. He loves to hear his voice in the microphone. Derek gave me a nice verbal gift last week. Our aunt had brought pizza for lunch. When she was leaving Derek said "Thank you for the pizza." That is huge for him. I was so happy. He did well through Christmas. He enjoyed opening packages and mail. We went caroling on Christmas day and he even sang with us. We are so thankful for these improvements. It is wonderful to see how God has brought Derek along. We are going to attempt a sleepover with our church youth this week. I am not sure how long he will last. He still gets overloaded easy in crowds with poor sound control. Thank you all for checking on us and praying. Have a Happy New Year!
Monday, December 1, 2008 11:42 AM CST Hope everyone had a nice Thanksgiving. We stayed busy the entire weekend. Derek was so happy he did not have to do school. He is also happy that it is now December. Up until this year we could shop for his Christmas with him in the buggy. He had no idea what Christmas was. This year is a different story. We made the mistake of shopping with him around. He knows what gifts are at who's house and cant put it out of his mind. Anything that reminds him of one of his gifts he lets you know where it is. He was also eager to change all the calendars to December. It is a busy month with play practice, dinners, visiting.....I am excited for him to experience the month. Nothing he has not done before but now he knows more about what is going on. When I went in his room the other day he had the people from his Nativity Scene loaded in a toy bus with one of them driving. OK, so he still has alot to learn. School is some days easy some days not. Still working on the mess of therpy and curriculum to fit his learning style. Thank you all for praying for us. GOD IS SO GREAT!!! Sunday, November 9, 2008 1:58 PM CST We have great news!! Derek's urine was clear!! Thank you, Lord!! October was busy. Our church choir had appointments once a week in Oct. Derek did well. His favorite part of the service is when he can sign to me "finished!" He finds great need to confirm when we stand up that we are done and headed back to the yellow house. I pray some day we will find the right seat and hearing device to allow him to hear and understand the messages. We visited our Grandma's homes for Halloween. He had two differnt parties that he enjoyed. He was able to ride a horse, go on a hay ride.... I watched him at both parties with joy in my heart. We have spent many outings sitting in the car, heading home early...because of overload. He showed no signs of overload and even jumped right into the three legged race, sack race, and pumpkin painting. We are so thankful! School continues. It is work due to the way he learns but God is with us every step of the way. We are still working on the therapy situation with the board. Thank you all for checking on us and praying so faithfully.
Tuesday, September 30, 2008 10:41 AM CDT September has been full. Derek has done well with school and continues grow mentally. We have been on outings, camped again, visited the library and sang at different churches. He has been overloaded very few times with these activities. He has even done show and tell at co-op. We have several things going on in Oct. and I am excited to experience them with him. This morning his reading story was about the first man on the moon. It was neat to watch him in his head put it all together. A man got in a rocket, went to the moon, walked around and came back. That moon outside in the sky. We even looked outside. A small update on the Cabell County School situation. We, with help from aunt Tammy, did some research and found our true answer. The county keeps telling me it is against the law to see Derek. The truth is there is no law saying they can or cannot see him. The county just does not want to see him so they are not. We know that Derek's learning ability is a gift from God. I also know that when doors close others open. Praying for direction in the situation. Derek has always been the type to learn things on his own. Shawn and I both have tried to teach him differnt things through out his life that he just did not get. One day out of no where he does or says what we tried to teach him over and over. Such an interesting little man. Thank you for praying for us. We love you all. Thursday, September 4, 2008 7:55 PM CDT Our trip went well. Derek did ok but eating out and large crowds are not the greatest for him. He did his best. Kayla and Derek both did well with their first week of school. We always start the school year out with a two hour gym class "swimming" each day. I finally heard from Derek's HI and speech therapist this week. They informed us that the board had decided to stop Derek's IEP and drop him as a student. What? Who? Why? How? We have asked them all. I wont type what is going through my head but please pray for the situation. We strongly feel God has led us to home school and will not stop for a few sessions of therapy each week. We are trying to get to the bottom of this and will thank you in advance for your prayers. I know in the end God will lead us in the right path. God is good! Tuesday, August 26, 2008 3:18 PM CDT We started our co-op today with a picnic in Huntington. It was a nice day but a quick reminder of why we spent the summer at home. It is not easy for a shy little girl and a hard of hearing little boy to make friends. I sat back and watched them play alone or together. It is not just this setting that is difficult for them. Children have no idea how hard Derek has fought for his life and just see him as the boy with things in his ears. I pray that through the years he can make a few friends that accept him. He is such a good kid when you take time to know him. We are spending the rest of our 1st week of school in Nashville. We are taking our 1st "field trip" for this school year. When we return we will be ready start full swing. I have not heard from his HI or speech teacher yet but that will be starting when we return also. Thank you all for checking on us and praying. We love to see him improving.
Tuesday, July 29, 2008 8:25 PM CDT Today, 5 years ago, Derek was diagnosed with stage 4 Neuroblastoma. It is hard for me to put in words what this experience has been like but know that God has been with us every step. He is the only reason Derek is still with us. Derek was our "pacie baby". He was always tearful, kept a warm head, loose stool.... yet our sweet baby boy. At 15 months old, I found a spot on his side that alarmed me to take him to the Dr. Our day unfolded into a nightmare that lasted for a good 3 years of treatment. So much pain, so many drugs just to be here with us today. I know it would have been easier for him to give up the fight as a toddler but he trusted us and we trusted Jesus. Derek has become such a loving, unique, little boy. I try not to let myself wonder what he would be like "normal" or not with us at all. We are so thankful for everyday God gives us with him. It has made us look at the world differently. Even Kayla is one of a kind and such a beautiful person. Thank you all for the many, many prayers you have said for us. It is such a comfort to know we have family and friends that care so deeply for us. May God bless you all!
Monday, June 23, 2008 9:51 AM CDT Just a small update. Anyone who has been around Derek in a class room setting knows how hard it is for him to focus. We got in the car after Church yesterday morning and Kayla informed me that Derek had read 2 verses in the Bible for the class. That night at church during song time he sang Jesus Loves Me for the church. He has been telling me for about a month "Derek sing". I was not sure if I could trust him to go up and do it so last night I let him. What a blessing!! I know he does not understand much about church yet but I see signs of him learning. I know it is prayers being answered. Events like this are such treats. It makes me forget all the un-6-year old things he does for the moment. We are still doing 1 hour of school a day. I call it "keeping the fires burning". It has been review so far so no stress. The water is to cold to swim so we are just riding bikes. Hope everyone has a great week. Thank you all for praying for us. Saturday, June 7, 2008 9:29 AM CDT Well I am sure the next picture Shawn will post is Derek in the pool. He would live in it if we let him. We have been camping and have a few more small trips planned. Most of the summer we will be stringing beans, swimming and riding bikes. Our 1st and 3rd grade books came in so we are doing 1 hour of school each morning. Kayla and Derek both do better if we just keep rolling with school during the summer. Less stress when we add trips and parties to the school year. We heard from NY recently. They are ready to keep Derek on urine collection every 6 months and no scans. In July he will hit his 5 year post diagnosis mark!! THANK YOU LORD!! We will still see his Dr's in Charleston once a year. It is hard to put in words what this journey has been like. We are just so thankful for Kayla and Derek. They are so different and challenge us in their own ways. Thank you for praying for us! Derek still has issues verbally, mentally, socially.... but this is all minor! God is good!! Friday, May 9, 2008 2:46 PM CDT Great news! Derek's urine was clear! THANK YOU LORD!! I mailed it before we went on our camping trip. It has to be overnighted to NY to be tested. Sending it cost any where from $50-80 dollars. UPS always try to talk me in to not overnighting my package. It seems like every time I get to announce we are sending urine on ice and it cant get there in a few days. With all that out of our mind we took a 9 day camping trip. Our "spring break" even though school ended this week for us. We had a wonderful time. Derek and Kayla both learned things. We saw thing that we had studied this year. Derek was still up by 6 every morning. I must say he drank his milk much faster than he does at home. He always tries to make deals with us. "Mommy, pirst da milk, den da thwing, den da fwim, den da ride bike......." Every morning he had a plan for us. He would get so tired we would leave an hour early for dinner so he could take a nap. He always woke up with an evening agenda for us also. This week was their last week of school with the ABEKA literature. We are off to 1st and 3rd grade. Derek still has a few weeks of speech and his HI teacher. We are having our co-op picnic this week and then we will be ready for summer. Derek and Kayla will be starting school in the summer for an hour or two each day. That lets us have more days off for travel in the fall. Swimming does not start around here until noon so it wont take up to much of their day. We are off to NY in July for testing. Until then Derek is just going to be Derek, learning, laughing, loving, growing..... Thank you all for checking on us and praying. God is good.
Monday, April 14, 2008 1:52 PM CDT Huge thank you to everyone who sent cards or gifts to Derek for his birthday. I will try to have Shawn put a birthday picture on. This was the first year he realized it was his birthday. We had it marked on the fridge and kept telling him it was almost his happy birthday. We had three cousins with birthdays in March and he decided he did not like icecream cakes. Things for him must be 100% chocolate. I told him I would make him cupcakes and he requested balloons also. Now I have animal balloons floating around my house. It is hard to explain how thankful we are to celebrate with him. On his second birthday he was so ill I couldnt help wonder if that would be his last. God has been so good to us. He may not have been able to eat or drink at two but he did his share of putting away the cupcakes this year. Just the excitement of opening gifts, blowing out the 6 candle, getting a card in the mail made his day, all week. We are back to school this week, co-op, skating, therapy at the school.... We only have 3 weeks of K-5 left. Once again God has showed us His power. Derek's language still lags behind but he has learned beyond what he should know to enter 1st grade. We will order books in May and start when they arrive. I know 1st grade goes much faster so we are starting early incase we hit a rough spot. Thank you all for your prayers.
Tuesday, April 1, 2008 1:12 PM CDT O.K. so our Easter picture is a week late. We all had a virus and missed Easter. Everyone is better now and back in full swing. Derek had his IEP last week. To make a long story short we will be going to Milton Elem. for 1 hour of speech and 1 hour with the HI teacher each week. We will start this tomorrow. Co-op only has a few Tuesdays left. I cant say that I am sad about that. I have high hopes that next year will be better. We will be doing our testing next week if things get worked out. They sent the wrong grade for us. Hope everyone is enjoying the warmer weather. We have been going outside as much as we can. Thank you all for checking on us and praying each day. Wednesday, March 19, 2008 2:31 PM CDT We have had a full March already. We went to Dr. K at the first of the month. She was so happy to hear him speak in sentences. He does not have to see her now but once a year. We will stay in contact with our neuro psyc in her office as needed. He is still testing with NY every 3 months. Our next collection is in April and a trip for scans in July. Co-op is going better. All the children seem to have chilled out a bit. They had an Easter egg hunt during gym and cupcakes after class this week. He continues with his HI teacher and speech. We did testing all last week for them. Our lovely IEP is due. He was going to have it today but woke in the night with a virus that is still going strong. I have washed all day(him, me, sheets, pans....) The little guy still does not give much warning. Shawn and Kayla went out to get him some supplies to make it through the night. We went on a little trip to Tenn last weekend. We went to the aquarium, golfed, and saw a play about the life of Jesus. The aquarium is so fun to visit with him. The smell is not cool but he knows all those sea creatures like he has studied them for years. He has been there before and he knows he has. However, he acts like it is the first time he is viewing any of it. Such excitement when he spots a shark, or any other sea creature. Golfing with him is a challenge. He hits his ball all over the place. I wondered how he would do at the play about Jesus. He hung the brochure on our fridge. Very restless when we were there but we were trapped in the middle with no popcorn. Popcorn helps him through anything Kayla and I decide we want to make the boys sit through with us. I know he recognizes Jesus but it is such a deep issue for him to understand. I tell myself that God understands because Derek is His. Things will be changing after his IEP and we are praying that everything works out well. Happy Easter to all. We will get an Easter picture on here after Sunday. Thank you for your prayers.
Saturday, February 23, 2008 7:41 AM CST School, tissue, play, tissue, tv, tissue, church........ It has been two weeks of this pattern. We are passing the winter days away waiting on the sun to shine. School is going well. Some things come easier than others. I am just thankful that he is able to learn. Before I logged in to write I watched pictures flash across our screen. A picture of him as a baby with his chemo bald head was on the screen. Funny how things can seem so long ago and just yesterday at the same time. He is so funny when we work with money. I use real money so I dont comfuse him. He does not like that there is new coin designs. He will sort the coins and throw the newer ones back in the jug. We went to our Valentines day party with the home schoolers. It was so cute watching his play musical chairs. He could not hear the music but a few children let him have their chair when the music stopped. We also roller skate with the home schoolers. He is now doing some of the games they play on skates. We are cont. with speech and his HI teacher. Some days are better than others. He is doing a co-op with about 60 elem. home schoolers. I am hoping that next year goes better with that. Derek's behavior is wonderful there but there is very little learning. The children in his class are not overly accepting of him but I am hoping that as they get older things improve. We have always taught Kayla and Derek to be kind to everyone legs/no legs, hair/no hair, young/old....... I have learned fast that not all children are taught this. It breaks my heart to see children his age not friendly with him. We went to Nemo on ice last night. Derek loved it. He would name every fish, shark, whale... that came out to skate. He was dancing to the music and downing the popcorn and diet coke. This morning we asked him is he went to Nemo. He told us "yef an ea da po corn!" We are heading on a field trip with the homeschoolers next week. Thank you all for praying for us. We love you all. Monday, February 4, 2008 3:58 PM CST Praise the Lord clear scans!!! We have been doing our little school/therapy/play routine for the past few weeks. The weather has kept us from doing many of our other activities. We did get to play outside this weekend. He has a runny nose now but sure had fun. The wind blew our trampoline through our garden fence and into several pieces. He did not stress over the trampoline at all. He was concerned that the corn was gone. I am thinking are you just now realizing that we do not garden in the winter. He has told us several times "Oh no corn gone. What we gon do?" We went to the Hannah Montana movie on Friday. Kayla got a ticket for Christmas so we all went. (Thanks Aunt Marsha!!) Derek and Shawn were not as impressed as Kayla and I were. Derek loved the 3-D glasses but turned to Shawn half way through and said "Wes doe home Dad." He still wears the glasses around the house. Therapy is some days good some days wow! He likes to play "who has the power" some days and we get no where. We are working on certain behaviors and see improvement. He has always struggled with Wed night class at church. The noise level is over loading to him. He did the best he has ever done Wed. even singing in a normal voice to each song. Learning to read has helped so much. We have co-op, a valentines party, skating, speech and his hi teacher still left this week. Praying he is in the right mood and learns something from each experience. Thank you all for your prayers. Tuesday, January 22, 2008 3:20 PM CST Now we wait!! We made it to NY and back. Derek did well with his test and we are waiting for a call to let us know the results. We did not take a stroller this time and Shawn only had to carry him after his sedation. Floppy head, jello legs, talking crazy all that does not mix with a nice long walk back to the Ronald. I lost my update 30 seconds ago so this one is short and sweet. Thank you all for praying for us. I will update when we hear from NY. Thursday, January 10, 2008 12:35 AM CST Hello to all! Last week we spent our free time in the snow. Derek did get to brave and went down the hill before I could get on the sled. He hit face first the swing set pole. He scratched his chin up and ran his bottom teeth through he lip. He did not let the blood get in his way. By the time I got to him he said "Les go again!" He has mended well and no stitches were needed. His HI teacher and speech therapist started back this week. Some moments he did great, others he was in left field. We started a christian co-op this week. He did well in class but moving from room to room seemed to not set well with him. He had some behavior issues and was asking to got to the truck often. I think once the entire class settles down it will be easier. He has gym, reading, science and art. Kayla loved it as well. I am in search for my next years home school lit. Derek is not a phonics person because he can not hear soft vowel sounds. Sight reading is working beyond great with him but there are little to no programs that are structured this way. I will be contacting Romney to see what they use. We visited the dentist today. When we pulled in the lot he started to cry. He said "Mommy, no, I burp." He was remembering his big vomit the last time we were there. The dentist and I got him calm enough to check his teeth without any messes. Thank you, Lord! We are off to NY Wed for testing. Please help us pray for a safe trip and great test results. We love you all. Monday, December 31, 2007 12:30 AM CST Happy New Year to all! Derek made it through Christmas with only 1 or 2 overload spells. Christmas eve night after our third stop we made it home. He started to cry while Shawn was giving him a bath. It was a (I am tired and have had enough) cry. The next day he did not want to leave the house. He loved his gifts. He got a good variety. I love the new books and educational games. We started school back today since we will miss a week in Jan. We have a few more weeks until we go to NY. Kayla and Derek are going to start a Christian co-op next week. I am not sure if Derek will get anything from it. My goal is just to teach him to be respectful in a class setting. I will be signing to him during class time. We will see! Thank you all for praying for us. We love you all. Thursday, December 20, 2007 10:48 AM CST We want to wish you all a Merry Christmas. Derek and Kayla both did well in the Christmas play. Derek does not talk much in public so I think every one was shocked to here him talk as well as he did. He actually said his part twice. He can hear himself in a microphone so he loves the mic. Kayla played her song on the piano like she had been playing for years. She is going to play again Sunday. We are finishing up school and ready to take another break. We picked up the pace with Derek but he seems to be getting tired of school faster. Must have a happy balance with the little man. He made cookies with his speech therapist and crafts with his HI teacher on Wed. Our home schooling group had a Christmas party at one of the local churches. Derek loved decorating the cookies and Kayla won pin the star on the tree. Our home school families are so nice and a great support. We are going to the nursing home on Friday to pass out gifts and sing. This will be a first for both children. We have many stops to make for Christmas. I am sure Derek will get overloaded. We hopefully have things spaced out well enough. He is doing so much better. He loves his cousins. It makes me sad to think back to the first time we were able to have Christmas with every one. He went to the closest empty room and shut the door every where we would go. He has come so far I cant even put it into words. Thank you all for praying for us. We love you all. We have our Special Angels ornament in the kitchen and still are praying for our families we have met through this journey. Merry Christmas or as my 4&5 year olds at church say Happy Birthday Jesus! Thursday, December 13, 2007 8:17 AM CST Derek currently is getting over pink eye. Having a runny nose to him is an every day thing so he does not pay any attention to it. He had speech and his HI teacher this week. I have said it before but I will say it again. Some days his is hot and some days he is not. His concentration this week has been off! He did get his hearing aid fixed. I wrote out his Christmas play part for him so he could read it. He speaks so much clearer when he is reading. He is suppose to say" A Animals were in the barn. I see a donkey. Hee-haw!" He keeps saying " I see a dinosaur." He thinks he is in the comedy barn! We got a call from NY this week. They had to change our testing dates. We do not have the final date yet but it will not be the week of Christmas. Derek's meds come from Canada and have to be made seperate, over nighted and mixed together when they lay eyes on him. Since Christmas falls on a Tuesday they can not get all that lined up for the week. No problem!! Thank you all for praying for us. We love you all. Tuesday, November 27, 2007 3:45 PM CST Trust everyone had a nice thanksgiving. We had a wonderful time in Tenn. We were there last year at this time also. We could tell a big difference in Derek. His memory and response to things were much more age appropriate. We ended up with a broken hearing aid but it is being fixed. It should be a week. He does not like to just wear one so he is going without them. He talks so much louder when he does not have them in. Derek enjoyed every day we were in Tenn. It did not matter what the weather was, were we went or what we were eating. He still got up between 5:30 and 6:30 each morning but bed time came early for all of us. We were so tired. My mom could not believe it every time he would read a sign on a building. Kayla's big event while we were gone was her first tooth came out. It had to be in the car in the dark. Good ole Dad took a flashlight out and found the tooth. She has been waiting for so long for a tooth to fall out. She had even wrote a detailed letter to the tooth fairy saying where she would be, what she looked like and where she would be sleeping. Her mind is well beyond her years! We roller skated today with the home schoolers. Derek was skating like a wild man. I skated with his little friend and he skated circles around us. Tomorrow his HI teacher and speech therapist comes. Thank you all for checking and praying for us. Wednesday, November 14, 2007 4:11 PM CST I will start with Happy Thanksgiving to all. We have decided to take a camping trip to Tenn so no updates next week. I am not taking any school books and, well, Shawn will not be working. A true break for us all. Kayla and Derek will love getting to see him 24/7 for a week. School is going well. Derek's speech teacher and hearing impaired teacher both say they see change in him. Shawn and I can also. He is riding his bike better. I have been jogging beside him in case he wrecks. We have only ran into each other 1 time. I felt like a bully. He fell off the bike and his helmet went rolling. I checked to see if any neighbors were laughing at us. Safe, everyone was at work or school. Trust me I would not be jogging if they were out. We passes two boys one day that were playing football. When they tackled Derek stopped his bike and said "boy are you ok." He has been asking and answering more questions with out visuals. He tries to get me to do his school work for him on occasion. He will say "it you turn or we(read)to me." I keep reminding him I am the teacher and he is the student. Thank you all for checking on us and praying. We love you all.
Wednesday, October 31, 2007 3:04 PM CDT October is finished and November seems to be full already. Derek was the Cat in the Hat for Halloween. I will try to have Shawn put a picture on. Since he is not into super heros we looked for an animal outfit. Nothing over 4T is animal. He loved it and enjoyed going to all 6 houses we made it to. He would say Happy Birthday Halloween and then stick his hand in their bucket to fill his. Since we were at Grandma's and friends homes they loaded him up. We also went to my Mom's school for the halloween parade and party. Derek went with my sister and her K-5 son. I went with her 2nd grade daughter and Kayla. She said Derek did well with the noise. My sister and another girl in the class signed with him and he did well. He even tried to argue over soda pop vs. water with them. We tried 2 different times to carve pumpkins with him. He was not impresses with the insides. School is going well. His brain is so interesting. Some things are so easy for him and others I wonder will he ever get. He is moving on to the 1st grade reading books but could care less which stack has more/less. The brain? A funny little thing!! He knows when he does well on his worksheets. He will ask me for a sticker before I can pull them out. We have been working on his bike while the weather is still good. Now if I am jogging behind him saying "Go, go, go, push, push" he will ride a mile. If I left it up to him with out all of the encouragement it would not happen. When he stops he says "Mommy say yah Derek." We have a heart scan on Friday. No pain just hard to explain that to him. Please help us pray that he stays calm and that his heart remains strong. Transplant and chemo are hard on the heart and kidneys. We will be checking him yearly for deterioration. Hope every one has a wonderful week. Thank you for checking on us. We love you all.
Saturday, October 13, 2007 7:33 PM CDT Clear test!! THANK YOU LORD!! Derek has had a great week. He had two play dates and did wonderful with both. Due to different situations both boys know sign that came to play. Now if that isnt God sending Derek some friends. He also played at my nephews birthday party and did not stand out with any odd behaviors. It was so nice to see the children play with him. School went well this week. He also had a bone scan on Friday. He is into x as in x-ray so he understood a little of what was going on. His heart scan was rescheduled for Nov. He is talking more with us. He left Mommaw Hazels' house today in his Cat in the Hat outfit. He got to the truck and said "Mom, where my shirt, pant." He also went wild when we pulled into McDonalds parking lot. "Mom, there it is, Donalds, chichen, pish fwi, nona pop, e-lishous mom." That is music to my ears and happy tears in my eyes!! This week we have roller skating with the home schoolers. Thank you all for your continued prayers. Friday, October 5, 2007 2:26 PM CDT Still waiting on test results! I thought if I updated they would come causing me to re-type the update. We had plans to be in the Milton Parade last week and Derek got sick. He stayed with some family while I took Kayla. We made a trip to the neuropsyc. on Monday. I was nervous but things went well. Thanks to God! I get tired of explaining why I home school to people who wont listen anyway. She was very nice about it. She gave me some ideas to explore so far dead ends. I feel like God has opened the doors for where he should be right now. The week has been long with revival every night. Derek sleeps most evenings from his sinus blah. We are planning to go on an outing with our church youth Saturday. I have also scheduled Derek a play date next week. We will see how it goes. Hope everyone is well and having a wonderful week. Thank you for checking on us and praying so faithfully. Monday, September 24, 2007 2:30 PM CDT School has kicked in full swing as well as everything else. Derek is a trooper and Kayla and I are learning to balance his days. To much or to little stim and he just does not function well. Along with his therapy appointments last week we visited Dr. K. She was so impressed with how much he has grown mentally. She actually asked him to be quiet while she tried to talk to us. She set us up for his heart scan, dexa scan and neuropsyc. eval. She told us she could take care of all his follow up testing for life. Not the cancer scans. We will still go to NY for those. It was just exciting to know she would do that and save us extra trips out of town. The home schoolers went skating last week also. There were probably 60 children there. We met a nice lady with a 5 year old boy. She has two small girls also, one that has been critically ill. I know God sent her to me for this school year. She was so kind to us and wants to let her son come play with Derek. Derek and Kayla both skated until every ounce of energy was gone from them. Every time Derek would pass a child clinging to the rail he would say "Hewow!" We also went to the Huntington Art Museum for art/drama class. They had 1 hour of art class and then an hour of drama. They both loved it. Every child put on a costume in drama class. Derek found a Dr Suess hat. He was so happy! We were invited Sunday to a picnic for cancer children in Charleston. September was recently named Childhood Cancer Awareness Month. They ate, played and had a butterfly release. It was so nice and hard to put in words how the day unfolded. This week we are going to see a play from a Junie B Jones book. Mostly for Kayla. Derek does like plays better than movies so her will enjoy it also. We collected urine all morning and will be over nighting it to NY at about 5 this evening. Please help us pray no cancer cells show up. Thank you all for checking on us. We love you all. Monday, September 17, 2007 2:24 PM CDT Since I didnt have a first day of school picture to post, I took his picture before church last Sunday. I know he looks so sweet and cute. He got out of the truck at church and the tie was side ways, shirt un-tucked and shoes untied. He only stays put together for about ten minutes, if we are lucky! Our church had an outing Sat. night. Derek got to go on his first hay ride. He did like it. The tractor was so loud he could not hear the riders singing. Since we are finished swimming we play outside each day for about 2 hours. I decided to focus on his bike riding this week. Shawn had told me to take him to the little hill behind our house and let go. He did great and I cheered as he rode down the hill. Then it had to happen. He ran right into the garden fence. Legs under the fence. Bike on top of him. My heart stopped. Kayla got so excited because she thought she was going to finally get to dial 911. She has had that # on the fridge for 4 years now and not got to use it. By the time we got to him, he was not sure if he should laugh or cry. We all decided to laugh but he refused to try again. School is going well. His book work continues to be no problem. He has 4 different therapy/appointments this week and urine collection. Please help us pray things are clear. It will take a few weeks to find out. Thank you all for checking on us. We love you all. Tuesday, September 4, 2007 1:53 PM CDT September has arrived. What does that mean for us. Full time school and therapy. In my last entry I was expressing me excitement over Derek's therapist returning. Two days before school started we were informed that he would not have the same HI teacher. Starting over just does not rate high on my list but we have this saying "If its not life threatening, its no big deal." I am giving the new set up a month and will go from there. Sometimes personalities differ so greatly that minimal progress is made. We will see. The replacement is a nice person dont get me wrong. I just dont like to be lectured about homeschooling by people that dont know our situation. Derek seems to be doing better in his classes at church. He still has a hard time when all the children are in one room together. We have been camping the last two weekends. He has done well and enjoys it. Home is his favorite place to be and he will give me a "Mommy les do home," any time we have stayed away for to long. Hope everyone has a great week. Thank you for checking on us and praying.
Tuesday, August 21, 2007 8:05 AM CDT Hello to all! We are slowly getting into our school books. Derek is doing well. I have spent much time in thought about will he learn, catch up, function... I know God is in control and has been but I just have an added peace about the situation. The stress is not there anymore. I know it could have been gone in the first place but the Mom in me struggled to give it all to God. We are starting his therapy next week with the school board. He will have speech and a HI teacher 1x/week each. It is the same ladies we had last year. They are great people and great at what they do. I am excited for them to see him and his summer progress. He usually floats through each day just going with the flow. I have noticed this summer that he has made his own plans and voiced them to me. He asked me the other day "Where my dad?" I was so happy he noticed Shawn was not here. I tried to tell him that Dad was at work but what is work? Still not opened that part of his brain up yet. We are still swimming almost everyday. He is still trying to learn to ride his bike. Hope everyone has a great week. We love you all and are thankful for your prayers. Wednesday, August 8, 2007 8:37 AM CDT Hope everyone is staying cool during this heat. We are swimming and staying in. It is hard to explain the changes I have seen in Derek this summer. His mind is catching up to his age and in some ways passing it. Dont get me wrong there are some parts of his brain still sound asleep but he is able to function better in the world. He is using his voice to get his way more. He gets me out into public and says " Mommy, Derek eated ah i cream." Now how can I not buy icecream. He is the king of running around in his undies. The other day he put his shirt and shorts on. I praised him for getting dressed with out being told. He then says "See Mommaw Donna, Cherie, children." He was wanting them to come swim. He is adding vocabulary each day. He is also able to put some sounds into words that he does not hear. I can not express how thankful I am that God allowed him to live. Just to enjoy his life with him in his own "normal" way. What a blessing!! We love you all and are thankful for your prayers. Have a great week. Monday, July 23, 2007 5:56 PM CDT Hello to everyone. We are getting ready to take a little trip with some of our family. Derek does not realize it yet but will be excited when we get there. He has been refusing to wear floaties in the pool. He scares everyone new that comes to swim. If he has on goggles he swims under water. All the other times he does a crazy dog paddle that looks like "just get me there." We are still working on his school work a little each morning. He is spelling a good 25 words and reading some simple readers. I know he knows them because I catch him writing what we have been reading. Yesterday in church he kept writing THE END. Every day is different. I was telling some of our family I could not wait to see the faces of his therapist when school starts. They will show up with ABC flash cards and he will see how many words he can spell with them. Yes he is only 5. I feel like he has found something that has meaning to him and he has just went crazy with it. He is doing better playing with other children. He even attempts to talk to them some times. He loves to play with his cousins and the children at church. Thank you all for checking on us and praying. Monday, July 9, 2007 2:03 PM CDT Trust everyone had a wonderful July 4th. We swam most of the day away. Derek did well but went to bed on our guest at 10 while waiting for the fireworks. The evening rain messed the fireworks up. We were in the garage when the rain hit. He took a paint brush and dipped it in the rain water. He was painting his famous 3 letter words all over the garage floor. We still have not heard from NY on the rest of his test. Shawn says they are no doubt clear because NY is quick with bad news. We went to my brothers this weekend to see his fire works. Derek started to cry 1 minute into it and did not want to watch them. We sat in the car for an hour while Shawn, Kayla and my family set them off. He kept telling me "lesh do" lets go. We ventured off to the dentist today. Six months ago he sat in the chair and let them clean away. I dont know what was different this time but it did not go well. He started crying and was spitting while the dentist was checking he teeth. The dentist tried to brush them for him and Derek's entire lunch ended up on three of us standing there. He had to take everything off and they gave me a large T-shirt to take him home in. So thankful for an understanding dentist. Kayla and Derek both got a good report so I was happy. Some days I try to understand his brain and body. Most days I accept that he is who he is and enjoy his life to the fullest of his ability. Hope everyone has a great day. Derek is rushing me so he can play little red hen on the computer. Thank you all for your prayers.
Monday, June 25, 2007 11:09 AM CDT Ahhh! Back to WV!! I must say we are not out of traveling shape but medical travel is so different. Twelve hour drives, longs days of needles, contrast, Drs.... Derek did well and we have two test back that are normal so THANK YOU LORD! When we went into the IV room he started saying "no, noo!" Shawn and I were proud of him for remembering the room and what is done in it. The first two years he went in for finger sticks and IV's he showed very little emotion. He flat out knew this time he did not want to go in there. They got his IV to work on the second stick so he is not full of holes. CT was delayed by an hour due to blood work but he did not have to drink the contrast twice. Yes, that has happened before. He did his CAT scan without being put to sleep. We were all so proud of him. He was put to sleep for his MIBG and bone marrows. We are still waiting on the urine and bone marrows to come back. All his Drs and nurses were so pleased with him. We also has to see a new Dr. that follows children for life post cancer treatment. That visit did not go well and we will let our cancer dr in WV take care of all these issues. Due to the chemo and radiation we have to watch his heart, kidneys..... It is a concern but God is bigger than any Dr or disease. Derek is in his hands and we are enjoying every day we get with him. We are focused on his learning right now and playing the summer away!! Hope everyone has a great day and thank you for praying for us. Monday, June 11, 2007 12:16 AM CDT We are adjusting to our first week without school and therapy. We have two weeks off and I am leaning toward making Derek do nothing. We went camping this weekend. We took them hiking and built campfires. This was two new things they have never experienced. They loved it. We have Bible school this week. I hope it does not put him into overload. Last year he was beyond over stimulated by all the energy. One week until we return to NY. Let the nerves begin! Thank you all for checking on us and praying so faithfully. I will have more at the end of the week after Bible school is over. Have a great week. Wednesday, May 30, 2007 11:18 AM CDT A new picture!!! This is from the walk at Duke. I guess now you all can see his new hair cut. It is growing. We went to talk the the Dr that did Derek's seizure testing last week. He did not feel Derek needed meds at this time. He called Derek's spells "an effort for his brain to mature." One of our speech therapist is going to contact our ear Dr about auditory vs. language processing issues. The last time she worked with Derek he was tired and over challanged by her. He was zoned more than not. More times than I have ever seen him in an hour time frame. We partied all weekend. Kayla had her cousin Sierra (Sea wee laht, as Derek says) spend the night Friday night. Derek played with both girls and enjoyed himself. We had both girls a joint cookout on Saturday for their birthday. Derek played with the kids and loved it. By Sunday and Monday he was jet lagged and not functioning well. We cooked out on Monday for Shawn's family. Derek stayed off by himself and talked very little. I know he had fun but he was just not perking 100%. Ms. Vickie made two trips to her car this week bringing in summer work. We made an ABC book for Derek with Terri this week using things from his room. We still have our last visit with Renee and a trip to Dr Harris this week. Thank you all for checking on us. Your prayers are alway appreciated. Thursday, May 24, 2007 2:01 PM CDT Well Shawn has 4 days off this week end so I am going to attempt to get a new picture on the web page. I am not computer friendly myself so I have to wait on him. Derek has two weeks of therapy left until school is out. We have tons to work on this summer but Terri and Vickie will be missed. Not only by me. Derek asks me every morning " Mommy, Tewie comie, Mickie comie?" We took Kayla and Derek to see Shrek and they loved it. Derek followed the movie even laughing out loud at funny parts. He was so locked in Kayla was feeding him the popcorn. One bite to her every 10!! We also took them to the park one evening around 7. There was only 1 other girl (3ish)there. He kept saying "come on, lets go, your turn...." It is common for him to speak in phrases but usually he only talks to Kayla. He wants to play with other children but is not sure what to say to them. I love watching him change and grow. I went to order their 5-K and 2 grade school books this week. So excited to start. I could easily stress over the way he learns and his ability to learn but God has gave me a peace about his education. Thank you all for checking on us and praying.
Monday, May 14, 2007 12:37 AM CDT We did make it to Duke last week end. It was so nice to see the staff and a child we transplanted with. We visited with friends from CA that had a sweet baby girl transplanting when Derek did. She is now with Jesus. Her family is so strong and will see her again. Our 16 families were from all over the world but we were family. It is so nice to talk with everyone. We went camping for Mother's day and had a great time. There was a pond with sand around it. Derek fell in love. The beach, the beach.... We played in the sand but did not dare brave the pond. It was so nice to kick back and watch them play. We are having a count down until school is out. Derek and Kayla have finished their home school lessons. Derek still has his classes from the board. He continues to be the king of three letter words. He plugs in any 3 letter word he finds into his word whammer to see what it says. He is starting to recognize words out in public. He will say "Mommy look d o g, dog." He trashed his picture in Wed night bible class but I brought it home with us. On the back I found - Derek, Bostic, bug, bee and sis. It made me so proud of him. Now he has no idea what the class was about but he was there in body. It is hard to explain how he can learn so much so easy but can not carry on a conversation. He has been going around this week singing the months. Like any freshly 5 year old would care about the months. He is just a joy to teach! I can say that about Kayla as well. They learn so different but we love the challenge. Thank you all for your prayers. Wednesday, May 2, 2007 9:21 AM CDT What do you get when you mix 24 hour seizure testing with an awards ceremony? A bald son!! Derek went in for his 24 hour seizure test on Monday. He had a good 25 wires glued to his head for the 24 hours. We did catch him several times in the middle of his "spells" and will talk to the Dr next week about the results. He did well being on "bed lock down". We did plenty of snacking and playing. Tuesday night Derek received his 1st award for his achievements this year with his education. The ceremony started at 6 in Huntington. At 5 that evening we were shaving Derek's hair because the 25 patches of white glue would not come out despite our multiple attempts. I must say he looks cute but looking at him with no hair brings back rough memories. Dont get me wrong I would take him hair or no hair and am thankful he is here with us. We are just not open to negative hair opinions. Derek did well at the awards ceremony. He was presented a trophy and a mall gift card. I will be taking that straight to Borders for fresh books. So thankful for the team that works with him. We felt like it represented them and their hard work with Derek. We should be heading to Duke for the weekend. It is the transplant units walk/party to raise money for the transplant families. It is always nice to see the people that helped Derek through his illness. He is still not a big talker in public but is learning more everyday. He is spelling 3 letter words and recognizing some of the sounds he does not hear. I am going to stop going on and on now! Have a great day to all. We love you and thank you for your prayers. God is great!!! Tuesday, April 24, 2007 11:04 AM CDT Derek is loving the sunshine! He likes to go "ou fwide". We are working on finishing the rest of his 4-K and therapy for this school year. We did make it to the circus. He loved the animals but was not sold on all the flipping and flopping people. We have things going on every day this week but trying to not overload. Hope everyone has a great week. We love you all and are thankful for every prayer you say. Tuesday, April 17, 2007 11:25 AM CDT We have returned from our turning 5 travels. We went to Tenn for Derek's birthday. It was all about him for 5 days. We went to an aquarium, zoo\farm, horse back riding, and to a dinosaur museum. He was so happy and talked all the time. Stepping away from our routine at home was so nice and needed. He has jumped right back in to school and therapy with a much better attitude. I must say we all are more motivated. I will have Shawn put an updated picture on when he gets a chance. In so many way we could see that Derek was not 5 in all areas of his life. We did notice the progress he has made and loved hearing him talk. I could tell story after story but will not rattle on and on. Thank you all for your love and prayers. We are so thankful for you all. We are most thankful that our Lord has touched Derek and is allowing us to make these memories with him. Tuesday, April 10, 2007 9:06 AM CDT We found out Thursday night that Derek had clear test from NY. THANK YOU LORD!!! We made it through the Easter weekend. We were working around the cold and a cold but had a nice time. We got together with cousins from both sides of the family to eat pizza and cake for Derek's birthday. He loved blowing out the candles and opening the gifts. Shawn, Kayla and myself are thrilled with the gifts. A fresh set of educational toys! Love the old ones but we ALL have his books memorized. He hits us all up at some point in the day to read or play with him. I love to hear Kayla read to him. Derek will be turning 5 on Wed. April 11. When you have a child you know they are a gift from God. You leave the hospital with a beautiful baby and your heart filled with happy thoughts of the future. Not one time did we think he may not be with us long. For a year Derek looked great but was clingy. Cried and had warm head, just teething. He had constant runs, just from nursing on and on until 15 months old. We never expected to hear that his big belly was a tumor instead of baby fat. So thankful God opened our eyes and led us to help. So thankful God has touched him and let him live. So thankful God will always guide us and show us to enjoy every day. It has not been easy in any way but to feel God with us, we know for a fact He is in control. I can't really explain how we feel about our children but love every second we have with them. We are treating Derek to a little trip for his birthday. Thank you all for checking on us and praying so faithfully. Tuesday, April 3, 2007 9:21 AM CDT As many of you know Derek is a HUGE Dr Suess fan. This picture is Red, Ted, Ed, and Ned in bed. He acts out the books. I went in his room one day and there he was. Red, red, they call me Red..... He has been doing well with his therapies but still having burn out when it comes to school. Some days I think we will be ready in Sept and other days I get over loaded just thinking about it. That is such a long way off. We mailed his urine collection out last week and are waiting on the results. I am sick to my stomach pretty much everyday waiting on the results. Cant help it or explain it and I will leave it at that. We did hearing test last week as well. She could not believe how much language he had packed in the last six months. She was able to put the head set on him and do more detailed testing. His hearing had not changed and that is fine. He is so amazing to us. I cant even begin to spell like he says this but he pretends he is a stegosaurus. He just walked up to me with a cone on his nose and said "Mommy, triceratop." I had to get his book out to look up what a triceratop looked like. It is just the small things that make us so thankful God has allowed him to live and learn. Taking walks, digging in the garden, on and on. I must say Kayla is just as amazing as Derek. She just correcting one of my words on this update that I had mistyped. Derek went to an egg hunt at our church this weekend. In door and about 200 eggs laying in the floor. Every egg he would say "Ah ha I found you!" He has two more hunts this weekend. Hope everyone has a wonderful Easter. God is so good! We love you all. Tuesday, March 27, 2007 8:21 AM CDT Well, I feel I should type fast. Our computer has had a mind of its own recently and we have not been able to update. I want Shawn to put a new picture on but that is not going well either. Since we last posted Derek has made a trip to Cabell. He fell off a piano bench and hit the frame of our bed. He came running to me saying boo boo, hurting. He had a golf ball knot on the side of his head. When I sat down in the chair with him, he went right to sleep. They worked pretty fast at the ER and he did his first CT awake. He did not have a skull fracture. We wanted to make sure since he has had a transplant. He is doing well with therapy but is showing signs of burn out on his 4-K. He only has 30 days left of it so I am stretching it way out! He is still willing to learn through computer, books, leap pad... Talking more and learning more every day. Since he is getting ready to turn 5 some of his therapies will stop. I think it will help him not be so overloaded. Thank you all for checking on us. I will update again as soon as Shawn is able to get the snow picture changed.
Wednesday, March 14, 2007 7:49 AM CDT Hello to everyone! We have been enjoying the sunshine. Derek and Kayla have been wearing the tires off their outside toys. We survived another IEP meeting. I must say the best we have ever had. Only an hour long after hours of preparing for it. Derek will have his same hearing impaired teacher and speech therapist next year. Since I am home schooling him, we will decide next fall where he will see the therapist. We are out growing 3 of the therapist we had this year because Derek is turning 5 in a few weeks. Yes, 5!!! We took him to the hospital at 15 months old not knowing if he would live to return home with us. Thank you Lord for every day!!!! I was waiting to update after Derek's test yesterday. We did not get any answers so I decided to update anyway. To finish out the month we have cancer testing (urine collection), hearing test and new ear molds. We are doing a more extensive seizure test in April. Derek will spend 24 hours in the hospital for it. He will not be thrilled with this but it is minor. Thank you all for your prayers! Sunday, February 25, 2007 12:47 AM CST Derek had a week full of Drs and therapist. Wait, that is no different than any other week. We are working to get paper work in order for his IEP next Friday. Things always get more complicated than they should when it comes to these meetings. We did errands by ourself this Friday because Shawn was working. I took both children into Quiznos in Barboursville. We sat at a tall table and just got cheesy chips everywhere. I watched the busy world go by out the window and had to stop and thank God for the time I get with Kayla and Derek. Saturday I decided to take Kayla iceskating. My mom went to play with Derek while we skated. When we got there he decided he wanted a pair of skates. All I can say is "fish out of water." He flopped all over that ice never really standing up on his own. I did not let him fall but 3 laps was our max. I finally put my hands under his arms and pushed him around the rink like a broom. Kayla did not want to hold hands and skate so I did not have to worry about her. Thank you all for praying for us. Have a great week. Friday, February 16, 2007 6:04 PM CST The picture Shawn is putting on here is from last weeks snow. Derek for the first time in his life was able to play in the snow. A few years ago I remember him watching Kayla and Shawn out the window. He would put my hand on the door knob wanting me to let him out. This year he fully enjoyed trashing our hill and then went to Uncle Mike's to trash his. He made snow angels and threw snow at all of us. He even threw snow at his Great granparents that were watching out the window. He did his school work but all his therapist cancelled. I tried to do the therapy but he was not overly willing. It was like he was on winter break. We also went to a Valentines day party for Kayla's home school group. They had crafts, devotion, food and bingo. Derek would yell "flamingo" every time he would bingo. All the little girls would laugh at him. He kicked back in gear this week with therapy. More than one said "he is going to make me cry." He was on the money and beyond with each visit. It is hard for me to explain but his week off helped. He learns every day. Thank you all for praying for us. We love you all.
Thursday, February 1, 2007 7:37 PM CST Well we made it through the week with some great improvements. Derek has been using his voice all week. He has shocked every therapist that has shown up this week. He told me Wed morning "Mommy I hungry." I fixed him something to eat and went to brush my teeth. He came in the bathroom "Mommy Terri coming?" Which is who usually comes on Wed morning. This does not sound that big for a speaking child but for him to come up with that put a tear in my eye. He loves to be around children at the library and church now but still does not use his voice to communicate in public. We will be doing some activities with the homeschoolers next week which is always interesting. So thankful to have him and Kayla in our lives. Hope you all have a great weekend. Thank you all for the prayers from close to home and far away we know they work. Monday, January 22, 2007 3:48 PM CST Hello to everyone. Tons of learning the past two weeks. Therapy went according to Derek's mood for the day. Some of his therapist are still learning him and others are a great challenge for him. He is talking all the time. Mostly quoting books he loves or songs. He tries to carry on conversation with us and it is wonderful. The other day we were walking to the car and he said "You hear the birds." I was like wow I do and now you do as well. So often we slide by in life not taking time to appreciate the small things. I hear, see, taste, smell and feel with no effort but hearing birds was something new to him. We are so thankful for Kayla and Derek. Our homeschooling group went roller skating last week and to a play in KY. Kayla loved skating but Derek was only impressed for 3 laps. He told me finished and headed to the door. He liked the play better. Thank you all for checking on us and praying. We love you all.
Monday, January 8, 2007 12:10 AM CST I hope 2007 has been off to a great start for everyone. We packed all Derek's therapies in 4 days last week because of the holiday. He was not back in the swing of school work but has done better this week. He is learning the days of the week and months. I cant even begin to type what that sounds like. Those are big words to someone who cant hear well. We took Kayla and Derek to the dentist last week. Kayla was nervous but did great. Now six months ago when Derek was there his teeth were cleaned with him on my lap, crying and vomiting. He went in the room this time and got right in the chair. He watched Dora above him and let them brush his teeth. I was so proud of him. Both dentist ended up in the room shocked at how different he was. Sunday morning he woke up with pink eye and when I took him to the dr he got right up on the table and said "brush Derek's teeth." Sometimes I dont always read his signs when things are wrong with him. Sunday morning he got up at 6 and went to the bathroom to run water. He came to my bed and kept saying "it broke". I thought his bed rail fell in the floor so I put him in my bed. We dress him at the last minute for church so I did not figure out until 9:30 that his eyes were what was broke. I have to share this one last thing with you. Shawn's family are big MU fans so I asked for a MU shirt for Kayla and Derek for Christmas. When I put the shirt on Derek saturday he said "butawoo" or buffalo. He may be built like an athlete but animals and trains are his heart! Thank you all for praying for us. We love you all! Monday, January 1, 2007 10:02 AM CST We want to wish everyone a happy new year! There was no staying up for us. Derek came hope from church last night and fell in our kitchen flat on his face. He busted his nose so we basically got him cleaned up and tucked everyone in bed. Traveling to NY was a 12 hour journey. Kayla decided she was car sick 3 hours into the trip and vomited everywhere before we could pull over. While we were cleaning everything up NY called my cell to say the injection was delayed a day. I started laughing right on the phone with her. It was freezing and raining we were cleaning up vomit and tossing Kayla's new outfit. Cry or laugh? I decided to laugh! The hospital gave her a vomit pan to ride back home with. Derek did well with his test. He was stuck two times for an IV. He went into the IV room and said "Ooo scare!" He did well not getting to eat day after day until the evening. Waking up from being put to sleep was still a challange. I had slipped his next set of drugs in some cool aid for when he woke up the first day. In his crazy drugged voice he asked for "nonu pop" soda pop. I tried cool aid and juice since I didnt have soda but he was set on "nonu pop" between thrashing and flopping. I felt goofie and unprepared because he does know what he is talking about. The staff was so impressed with how much he was talking that the main Dr wanted to see him before we headed home. He pulled up the CT and MIBG and said the pre-report showed no new disease. We were so happy! Thank you all for your prayers and support. We do love you all! Monday, December 25, 2006 9:41 AM CST We hope everyone has had a wonderful Christmas. We have taken time to enjoy Kayla and Derek this weekend with our family. Derek has had 2 full days of opening gifts and loved it. He did not show any signs of over load. We are leaving for NY for testing Tuesday morning. Please help us pray for clear scans. Our true Christmas wish!! We love you all.
Thursday, December 14, 2006 5:18 PM CST Derek has had a full week. We were able to pick up the hearing impaired teacher once a week so she came to set goals this week. They were high for him but went along with 4 year old school goals. She is nice and a calm person so Derek loves her. We visted Cabell today to let MU test him- speech, neuropsyc..... Anyone I have talked to about this has heard me say "I am looking for someone who will take the brain and break it down for me post drugs, hearing loss.... I found that person!!! We were there from 8:30 until 1:00. I could not stop asking questions. They were so smart and nice. Derek did great and tried so hard. We were able to watch him through a glass window while he was being tested. He kept quoting Green eggs and ham to them. It was funny to see how long it took for each person to recognize what he was saying. They explained so much to us and we are really looking forward to reading the final report. Basically shredding the one from Morgantown. This weekend is the Christmas play and then a full week of therapy and school before Christmas. Thank you for your prayers! Thursday, December 7, 2006 8:59 AM CST Well as I type Derek is saying the Green Eggs and Ham book by memory! He loves his books! We have taken this week to get back into therapy and school since last week was so different. We will be adding a hearing impaired teacher to his week and are very thankful. Derek's eyes light up every time we get in the car. He has to name every Christmas decoration at every house we pass. We go down the road hearing "Homan, kri bu twee, a ho ho ho....." over and over. I must say I love every minute of it. He is so excited. I am sure it is hard to believe but at 4 1/2 this is the first Christmas he is experiencing that he feels well and knows a little about what is going on. We walked through the toy isles at KMart the other day and he kept saying "Oh my gosh!!" He could not believe all the toys. Little things like that flood my heart with joy! Kayla told me last night that she could not wait until morning. When I asked her why she said because she was going to paint, color, and play games with me. I am so thankful God has gave me the time to enjoy the big and small things with them. We plan to lay low this weekend and have a full schedule for next week. Family pictures tomorrow. Pray for out little darlings! Shawn and I have mastered looking at the camera and smiling but the children still have issues combining the two. Have a great week and thank you all for praying for us. Thursday, November 30, 2006 7:23 PM CST We are finally able to get on the web page. It has been driving me crazy not working. This is a picture from our anniversary trip. We were able to go to the Dixie Stampede and Derek loved the animals. The food was great after the barn smell grew on us. They were able to ride this camel and loved the lights. Every block Derek would say "kri bah twee" (Christmas tree) so excited to see everything. We have packed school and therapy in these past three weeks along with a few other visits. We had a great trip to Cabell for his pre-testing in Dec. The lady was very impressed with how far he was mentally. Thanksgiving was nice but Derek was not as in to it. After about the fourth time he had to eat turkey with catsup and a roll I was so ready to give him a big pizza. We had a song and praise service the night before leaving for NY at church. Our youth sang as well as others and it was the perfect gift before heading north. Kayla stepped up to the mic to sing her favorite song. Yes shy little Kayla!! The next song I let go of Derek's hand so I could sign the song with Kayla. Derek stepped up to the mic and sang the song the kids were singing. I came really close to falling apart but I kept looking up and just thanking God for every breath he gives my family. He does not understand the songs and not all the words are even clear to him but he has a song in his heart. Every time we get in the truck he wants to hear "Di di du day" (This is the day). So off to NY monday and 3 hours into the trip NY calls and says they can not get Derek's meds due to a snow storm. We stay over night and call them the next day. Long story short we came home Wed night with no test done at all. We were camped out midway which is Hershey Penn so we ate chocolate to pass the time. Well we did a little more than that. We are still waiting on NY to call. Could be heading up as soon as next week. Thank you all for praying for us. We see God answering prayers every day and are so thankful. Take care and have a great week.
Wednesday, November 15, 2006 12:11 AM CST School, therapy, dr, school, therapy, dr..... We have filled the last two weeks up with this routine. Our church had a camp last weekend and we were able to attend some. It was way to much for Derek to take on full time- messed up bed schedule, different food, tall ceilings, screaming children, bouncing balls.... By Sunday dinner time he started to cry the I have had enough cry. My aunt ran us home so Shawn and Kayla could help clean up. It took me an hour to calm him down and go to sleep. I want him to experience new things but Shawn and I sometimes dont realize he has had all he can take until he draws the line for us. We have a short week this week because we are going to take a little trip. Tomorrow, Nov 16, is our 10 year wedding anniversary. We are ready to leave town for a few days. Kayla is excited and I know Derek will have a great time also. Next week is Thanksgiving and then we are off to NY. Already ill to our stomachs but believe God will guide us. Clear scans is our goal!! Thank you all for checking on us and praying.
Tuesday, November 7, 2006 7:52 AM CST I must say last week very few things went as planned. No complaints, we survived. Derek did ok with his therapies. Some of them cancelled on him. Halloween night Shawn got home from work at 7:30. We did make it to Kayla and Dereks Grandmaw's homes but our camera refused to work. We will have to get some pictures off of one of the Grandmaws. Our little 5 year old neuroblastoma buddy from Hurricane went to be with Jesus last week as well. Please keep his family in your prayers. We have made contact with MU and they will see Derek in Nov and Dec for testing. School, play and therapy on schedule for this week. Have a great week and thank you all for praying for us. Monday, October 30, 2006 7:35 AM CST Derek took last week to show off all he has learned in the past few months. Monday when Ski-Hi came one of the directors from the school in Romney came. She had read Morgantowns report before she came. Derek carved a pumpkin with his signing instructor. He talked, sang, answered a few questions, made eye contact and played with Kayla. The lady from Romney said that he is doing so much more than what she expected. He has learned to say his f sound well for Ms Terri but still cannot put it in a word. She is using a new phonics program with him to teach him to read. We had a costume party at the library. Derek was a lion and every child wanted to pet him. He did not mind at all. We paraded to the bank and enjoyed snacks. He was in a program at church on Wed night. He and Kayla both did great. We made a visit to his cancer Dr in Charleston also. She said that he was not the same child she saw 6 months ago. I could not have planned it any better if I tried. He found a frog to play with and was 3, 2, 1, blast off to the stars, fall down watch out alligator..... Non stop talking while we were there. She did get Morgantowns report and rolled her eyes. She said to give him a year and we would retest some where else. She did say to let MU look at him. He was on overload by Thursday and would not budge for his special needs teacher. I really did not care since he had just finished 3 great days in a row. We do have all our therapies this week. We will be going to all of Kayla and Derek's Grandmas for Halloween. This is his first holiday ever that he has recognized. I am excited for the rest to follow. Still taking one day at a time though. Thank you all for checking on us. We love you and appreciate your prayers. I will try to get Shawn to put a Halloween picture on for next week. I know this makes you happy Kim B!!! Have a great day, and may God bless you all. Monday, October 23, 2006 12:41 AM CDT I must say last week was one of those weeks that progress was visable. He did well enough with one of his speech teachers she started to cry. We have taught him his "f" sound. He will make it but does not put it into words yet. He does not hear the f at all so learning to say it was by feeling the air. All weekend he was saying sentences- I see a riber. I see a river. Monday, October 16, 2006 8:54 AM CDT Last week was packed. We had a full week of therapies and revival. By Saturday Kayla and Derek both took a 3 hour nap. We are still exploring our options with Derek's education and are waiting on a call from MU. He has a busy week but I am trying to keep everything as calm and in order as I can. He is adjusting to life so well (in his own way). We went to eat Mexican the other night and the salsa was in the middle of the table. He got a chip and pointed to the salsa and said "red". This seems little to some but I was going wild. He did not know what to call the salsa but he was asking for it verbally. We also studied the lost lamb in Sunday school yesterday. One child (age 4) would go in the hall and the other children would hide in the room being the lost lamb. Derek did not get the whole story but he loved the hands on activity and did it appropriatly. Little improvements like this are a gift from God. Derek works for everything he learns but he does have a will to work. We hope you all have a great week. We love you all and thank you for praying for us. God is so good!! Tuesday, October 10, 2006 7:34 AM CDT Good morning to all. Yesterday I spent the day on the phone with services so before I get started this morning I will update. Derek only had two therapies last week. The school speech lady was impressed he had memorized the book and song she gave him the week before. He is a Bostic. Singing is in his blood, even though he probably does not have an ounce of his original blood. We went to Morgantown on Thursday for his test results and are not convinced they are accurate. This was a neuropsyc. eval to evaluate his learning issues. We are making other contacts for further testing. I have been sitting across from Derek in Sunday school and signing basic parts of the story. This week we had a picture of Jesus sitting on a rock, talking to people. I signed that Jesus was sitting. The rest of the day he would say and sign "sit down Jesus." We have all our therapies this week, plus library, hearing dr. and revival. It will be a long week but we will only do what he can handle. Thank you all for checking on us and praying. I hope I can share enough with you that you see the progress he is making. Slow but steady!! We love him so!! Monday, October 2, 2006 8:24 AM CDT Good morning to all. Derek survived all his therapies last week and two have cancelled for this week. We took his teacher to the library to show her how he did in public. I had been wondering if I should take him to his library class or not because of all the back ground noise. She did not want me to stop going so she visited with us. When we got finished she said it was up to me that there was alot of distractions and she could tell he did not hear one word of the story. In my mind I was thinking I told you that already. I am going to take him for direction following and just accept the we are not going to get 100% of any activity we try in public. He has trouble in Sunday school and Wed night class just sitting in his chair for the story. I took a piece of yarn and tied around his belly and the chair as a "seat belt" yesterday. He took a pair of scissors off the table and quietly clipped himself free. He thought he was so sly. I was actually proud of him for problem solving. We love him and Kayla so much. We treated them to a movie on Friday and Derek did his famous fall asleep. Here Shawn and I were sitting in a cartoon movie with a sleeping child. Kayla just goes for the popcorn. We hope you all have a nice week. We love you all and thank you for praying for us. Monday, September 25, 2006 12:17 AM CDT Praise the Lord!! Derek's urine test came back clear. This is the first testing he has had since his treatment finished. We are so happy the neuroblastoma did not return. Derek's week was full last week. He was fitted for new ear molds on Monday. He does not get to excited over the squishy stuff going in his ears and we should have new ear pieces in another week. He did well with signing and the school this week. His shining moment was with speech. She was doing a six month follow up test. Six months ago she had to tell Derek what the picture was and listen for his sounds. She showed him a picture of a boy in a tub, expecting him to say bath. He said" Boy take a bath." Every card she showed him was like that. She was so happy that he knew that picture and was describing the picture. Six months ago he would have just said bath after we told him to say it. He has come so far. I have been working on opposites with him. He is starting to apply them to life. Little, big, on, off are all things he has to learn visually and hands on. Still waiting on Morgantown but no worries. He has a full week again this week. His school teacher is going to the library program with us this week. There is so much back ground noise that I was frustrated about taking him. We are going to use his FM system when he is there. The library lady is great and we hate to miss but I have to look at every angle when making decisions for him. Thank you all for your prayers. Have a great week.
Monday, September 18, 2006 10:08 AM CDT Hello to everyone! We ended up having two therapies cancel on us last week. We stayed busy anyway. Our church was in a parade Thursday night. Derek and Kayla both enjoyed it. All the action caused Derek to do his share of zoning but we expected that. He finally put his head in my lap and waited for the parade to finish. Kayla and Shawn were tossing candy and just loving the experience. Today we made a visit to Ms Kim for new ear molds. We also checked Derek's FM System and it is working. Derek has signing, speech and his special needs teacher this week. It will be a full week. We are happy with the team he has this year. Praying that our urine comes back clear and we can spend the next three months learning, learning, learning! He loves to do his school work beside Kayla and they are both enjoying it. Yesterday Derek attempted to make his own sentence. He quotes us alot( come back here now, do you understand me.....) We were getting ready for church and he went in his room. I heard "e Mommy" so I said "what?" He followed with "e Derek e baa baa baa's". He was wanting me to get his hearing aids for him. I went crazy praising him for putting words together. We see little things like this weekly and are so thankful to have him with us. Thank you all for your prayers. Have a great week. Monday, September 11, 2006 7:09 AM CDT Hello to all! Derek ended up having 4 different therapies last week. How did he do? When your hot your hot, when your not your not! Signing came at 6 in the evening. He did one of his famous lay on the table and not answer a single question. The school did come and he showed off. I was even impressed with him. He did will for speech also. Some weeks it feels no progress is made and then others we see great steps being made. We took a little trip this weekend. We visited two parks that we had free tickets to. Both the children had a great time. We did not make it home until early this morning. Everyone that knows my children knows they can not sleep past 7. We are off to do school. We wanted to also say a special hello to our NY family. Our prayers are with you today. Thank you all for checking on us and praying. Please help us pray the Derek's urine collection comes back clear. We should know in a week. Monday, September 4, 2006 5:38 PM CDT Hello to all! I must say our week was quite normal for us. We have enjoyed Shawn being off today. We are going to have signing and speech this week. The school sent us a letter saying they would call this week to start. We shall see. Derek is going to have a speech therapist and special needs teacher come to the house once a week. I have high hopes that this year will go better. We have not set goals for the year but agreed changes would be made before we ended last year. Derek is writing his "own book" as far as learning and there is no forcing him to be a common text book case! He is such a joy to be with and work with. He and Kayla are acting more like brother and sister every day. I even yelled for Kayla today and he yelled back "what". Some times I stop and think was that his voice answering me back? God is so good! Thank you all for your prayers and support. Monday, August 28, 2006 8:43 PM CDT It has been two weeks of chasing drs over the phone. I did not want to update in the middle of it all so I waited. Thanks for worrying about us Kim B. This picture is for you! Derek has really tried in speech but has not been ready for the level of work presented to him. Ski-Hi is changing times and trying to get him more focused. We finally made contact with a Dr in Morgantown that could do testing on Derek in Dec. Yes, Dec.! I told them we wanted on their cancel list. In an hour they called and wanted us in Morgantown Monday morning. We went Sunday evening in an attempt to not mess his routine up to much. The testing lasted all morning and involved us all. She will have a report for us in a month. Help us pray she was able to get a good understanding of Derek past and now. He was not impressed with the testing after the first hour. I kept taking him to potty and having him bounce like Tigger. All he really wanted was a little lunch! We had a safe trip and we made it clear to them that what ever level they felt he was at was fine with us. Our main goal was to stay cancer free. We love him deeply just the way he is! Thank you all for checking on us and praying so faithfully. Monday, August 14, 2006 7:17 AM CDT Hello to all! Last week was challenging. I called a Dr on Monday that we saw in May. She was going to do some testing with Derek before school started and had never contacted me. She informed me that she was not qualified to do the testing he needed and no one in WV could. She wanted to know if I could find someone out of state because I could probably get a response before she could. I did not await her call all summer to hear that! I am on the case for Dereks sake. Yes, JoJo you can call me for details! He had signing and speech last week but was having what I call an off day. That is when he is emotional over everything and just not getting anything. We are having signing and speech again this week and are praying for a better day with them. Friday we went to Kings Island thanks to Give Kids the World. It was cool and sprinkled off and on. The crowd was low and the day was great. Both kids loved to rides and food. It was a full day. Thank you all for checking on us and praying. Help me pray that God leads us to the Dr He wants Derek test by. Have a great day!
Monday, July 31, 2006 7:37 AM CDT God is good! I was a little emotional last week thinking that 3 years ago Saturday we took Derek to the hospital for a place on his side. Did not expect stage 4 cancer to be the issue. God has been with us this entire time. It has been miserable for Derek but I pray God gives him a full life with clean health. Neuroblastoma is ugly. Most of our friends with this are now in heaven or still fighting the disease. Shawn and I know God is the only reason Derek is still with us and we thank him for every day. We all did well with signing last week. We have stepped up the studies. This week we will be interpreting 20 sentences for our teacher Kayla included. Derek has a seperate lesson. Derek learned how to put a p sound on the end of a word in speech this week. He is so sweet. Shawn has been working all weekend and we have all missed him. Derek calls Shawn his "gorillalalala" and I am his "hyena". Remember this is the child who can not answer simple questions. Some how he has managed to learn every animal that has ever existed. He also loves trains and can show you the train isle in toys r us. We hope you all have a great day. We love you and thank you so much for your prayers. Monday, July 24, 2006 7:45 AM CDT Good morning to all. Derek ended up having speech and signing last week. He did great with both. He was answering yes and no questions with his eyes during speech. This is big for him. We spent much of the week swimming. I will say that he has memorized a set of his homework and it almost caused Kayla her pony tail. He goes around quoting the cards (wash your hands, put your shoes on...). One of the pictures is a little boy cutting off his sisters ponytail. The mom on the card is yelling stop! In Sunday school I happened to look up and Derek had scissors in one hand and Kayla's hair in the other. I managed to save the hair Kayla has taken 6 years to grow. However, that flashcard is going in the trash. I wanted to say a special thank you to the praying people across the USA who sign Derek's web page. It is so nice of you to keep us in your prayers and send us messages. Thank you also to our friends and family who pray daily. We love you all. Monday, July 17, 2006 10:41 AM CDT For the most part last week was spent with a virus running through the family. We did make it to Tenn to spend the weekend with my mom and aunt. The kids loved it and this picture is from our trip. Since we were stuck inside for most of the week we did lots of school work. Derek learned how to write his name and sign it. We are working on signing his colors and abcs. He will return back to speech this week and we will be contacting Romney concerning his signing class. Have a great week and thank you all for praying for us. Monday, July 10, 2006 11:37 AM CDT I must say last week took quite a spin after I updated. Derek took his hearing aids out three different time Monday morning but I thought nothing of it. When we went to swim at noon he jumped in and began to cry. He would not get back in and cried off an on for the next few hours. I took him to the Dr and she said both ears were as red as my sweater. I knew something was wrong with him but he could not tell me what. We are on 10 days of meds to clear up the infection. He has suprised us with a few vomits but I am sure are drug related. Once again he gives no warnings. We partied on the fourth but he was limited to playing in the garage. I took him and Kayla to 2 different movies to help them keep their minds off swimming. He ended up spending the day Saturday with his Gran while Kayla and I went to the youth outing. I had high hopes Ski-Hi would come this week but our lady is yet to call. I hate to get ugly but our once a week has fallen away to 1 time a month. We have plans to play this week and are entertaining the thought of a little camping trip. We love you all and thank you so much for praying for us.
Monday, July 3, 2006 6:57 AM CDT Happy 4th to all! We finished last week with Derek doing well at both his therapies. The summer has brought a much lighter schedule. This is good in some ways and in other ways we need to still press on. Kayla and I are working with Derek dialy. His big thing now is counting backwards from 10 to 1. We hear that multiple times a day. We have been working for 3 years now to get him to say "Derek" when some one asks him his name. He knows he is Derek but he does not respond to questions. He looked at me Sunday morning and said "Hi, My na i Dere(tongue click)!" I was close to falling in the floor. I figure he had heard that so many times that he said it so we would all move on. We have no therapy this week. Family is going to be here off and on this week due to the holiday. We have an adventure planned on Tuesday evening. Derek and Kayla's great aunt Kak has everyone over for fireworks. This will be a no hearing aid event! Our youth group is going on an outing Saturday. We are going but will have to see how long he last. Derek just put his finger on the red x in the corner of the computer. He told my " Dih one, qui(tongue click)" That was "this one, quit". He must be ready for breakfast. Have a great week and as always we love you and appreciate all your prayers. Monday, June 26, 2006 7:52 AM CDT Good rainy day to all! We made it back from our trip with some of Shawn's family. Kayla and Derek both did well and enjoyed the company. Derek had signing class last week but was not focused for some reason. He has two therapies this week and I am hoping for effort out of him. He and Kayla both participated in their Wed. night program at church. They both sang with their class and said a verse. Kayla told me she loved saying her verse for everyone. Her shyness is leaving her after 6 years! Derek did outstanding. He said God loves me "Dah duh be." I was proud of both of them and can see growth in them both. We will be attending a seminar this week to order their home schooling text books for the fall. I am so thankful God has allowed me to do this. There is no other place I would rather be or do during the day than teach our children. It does not look like the rain is going to let us swim much this week. Derek gave me a shock last week and a good reminder that he can not be trusted. I opened the gate to the pool and before I could get in he had jumped in with no swimmies. I would say he learned his lesson but his reasoning skills are not that great. The next time the gate is opened he will be touching me until the swimmies are on. Thank you all for praying for us. We love you all. Tuesday, June 20, 2006 8:34 AM CDT Well we survived Bible School! It was harder for Derek than I thought it would be. We had 16 kids in our class and it was over stimulating for him. He never knew where to look or what to do. One night we left his hearing aids out just to see if he did better where there was so much back ground noise. He did learn hand motions to a few songs and enjoyed that. He had two therapies and did well with both. Both kids swam all weekend. They were so tired they were willing to take a nap. Fathers day was nice we had Shawn all day, and the kids loved playing with him. This should be a calm week. We only have one therapy. We will be swimming and swinging or as Derek would say "wim and wing". We are going on an over night trip with some family this weekend and are looking forward to that. Take care to all and thank you for keeping us in your prayers. Monday, June 12, 2006 10:56 AM CDT I must say we are in summer mode. Daily walks, jumping on the trampoline, riding bikes...... Derek has just a few therapies this summer. We have opportunities through the library for some programs but are strongly considering taking a break. We work with him every day at home but it is nice to not run every day. This week is Bible School. He is starting to enjoy the kids in his class at church and gets a big smile on his face when he sees them. We have two therapies this week and the rest of the time is about play! Thank you for checking on us and praying day after day. Monday, June 5, 2006 11:03 AM CDT We have 3 of Dereks 5 test back and they are all clear. THANK YOU LORD!! We are looking forward to the three months off however this will be Derek's first time in 3 years without treatment. We attempted his pictures at Sears last week. They had a dino background so it was hard to get him to turn around and look at the camera. The lady was so nice and visual with him. He kept zoning on her and we were both sweating at the end. He only had one therapy last week. I must say he did his share of showing off for his teacher. Some areas he is growing weekly and some he still has no clue. We had two cancel but hope they see him this week. We took Kayla camping for her birthday. She said it was better than any gift she got. She rode her bike for hours!! Derek only liked riding down hill. Shawn and I were always carrying the bike back to the camper. They also got to goofie golf, take a paddle boat ride, play in sprinklers, and play on the playground. How did we fit all that in a day? You know my kids 6:30 and they are ready for breakfast!! They both took a 3 hour nap Sunday. We are home this week. Plenty to do each day. Thank you for checking on us and praying for us.
Friday, May 26, 2006 11:27 AM CDT Wow, what a week! Derek and Kayla both went to the dentist on Monday. Kayla loved it and her teeth were fine. Derek was not impressed with the cleaning but his teeth were fine also. We headed to NY on Tuesday which ended up being a 12 hour drive. We had a full day of testing Wednesday and half the day Thursday before starting back to WV. Derek was also not impressed with getting his IV started but did well with his sedations. We do not have results yet. We took him to a Dr in Charleston this morning to start developmental testing. This is standard for chemo children. I was nervous because Derek does not just bond with anyone. The woman was so nice and smart. She will be contacting us for further testing. We are tired from the week of testing and travel. We have big plans to party all weekend. Kayla is turning 6 and we are going to party at my moms and Shawns moms. She has been such a trooper through Dereks illness. We want her to know how much we love her and that the attention this week end is all about her. Thank you to everyone for checking on us and praying for us so faithfully. We love you all. Special thank you to our Lord for answering prayers big and small! Saturday, May 20, 2006 7:46 AM CDT Good morning friends. Some weeks we run all week and some we sit by the phone. This was a phone week and things were taken care of. There will be changes in Dereks therapies through the school next year and we are thankful for that. School cancelled this week but he had his other two therapies and did well. No, he did great! We had a good visit with one of his Drs this week. Derek is 4, 40 pounds and 40 inches. Kayla finished school this week so we took them to the movies to celebrate. She always loves the popcorn better than the movies. She told me "I cant believe I am going to be in the first grade." We attempted to get pictures made this week but had a failed event. It was a combination of Derek, the place and the lady taking the pictures. We are going to go somewhere else and try again, after I recover from this effort! We are off to the dentist on Monday and then will be leaving for NY. Yes, it has been three months since testing. It will be nice to see everyone but three full days of nausia for Shawn and I. Please help us pray for clear scans and an easy IV. The last time it took six sticks due to scaring and dehydration. This has left Derek with a bad attitude toward any medical facility. He will also see the Dr in Charleston that friday concerning his development. As you can read or have learned through you own experiences cancer is not just having cancer. Our weeks are full but we are so thankful to have him with us that we will run all he needs to. Thank you all for checking on us. We love you and are thankful for your prayers. Monday, May 15, 2006 12:07 AM CDT Happy Mothers Day to all. Even to those who are not mothers I am sure you have had a hand in raising nieces, nephews or neighbors. We want to let Cams mommy and Ryann, Rylee, and Kaymaens mommy know that we love them. We think you are both two of the best mommies God has ever made. Last week was not any different than the weeks past. School, drs, therapy very routine. However this weekend, WOW!!!! We went to Romney to the School for the Deaf, Hard of Hearing and Blind. We attended signing camp. It was outstanding and we all learned so much about hearing loss. Shawn and I had class after class on different issues. Derek and Kayla had their own classes. Derek loved it. It was so different playing with other hard of hearing children than hearing children. Kayla was ready to move in. Her teachers kept telling us how smart she was. She was even at the point of not wanting us to hold her hand going to class. My mind stayed on overload and our eyes were so opened I could not sleep. Well maybe the mattesses and pillows had a part in that. Lots of decisions to be made and praying God guides us and we listen. Thank you all for your love, support and prayers. We love you all. Sunday, May 7, 2006 3:46 PM CDT Hello to everyone! We started our first week back home on a bad note but things have improved. Derek had a bad experience with one of his therapies on Monday to the point of me crying and unloading right in the therapy room. Derek is fine and Mom will make sure he is never talked to or treated like he was that day ever again. We did meet the signing teacher for the board. She was so nice and Derek instantly loved her. He signed, counted, sang and even layed in her lap. We are checking into her picking him up once a week next school year. Signing, private speech and school all went well. They were all happy about Derek learning about 15 new signs while in NY. We took a little trip this weekend to Duke for the transplant memory walk. Thanks Kim B for covering for Mommaw Donna so she could go! It was such a nice day. Some of Dereks nurses and doctors were there. We saw our other neuroblastoma buddy from transplant. We were very surprised to see our little transplant buddy from Vermont and that really made my day. I was so thankful to have Derek there with us. A survivor, thank you Lord! We have a full week once again this week including signing camp next week end. We cant say thank you enough for all you do for us. Please keep praying for Derek.
Monday, May 1, 2006 2:56 PM CDT After a painful and emotional two weeks we made it back to WV Friday night. Derek had pain and hives more than usual this time. We do not look for him to HAMA but his two years of treatment are up. What does this mean? That is a good question. The 3F8 treatments are hard to understand and even harder to explain. The bottom line is Derek's future is in Gods hands and we, as his parents are praying he lives a full christian life. Derek was so happy to be home with his toys, needle and pain free. I will update at the end of the week. Derek has several appointments this week so we will keep you posted. Thank you all for praying and supporting us. Wednesday, April 19, 2006 7:52 PM CDT This is uncle Mike giving you an update as the computer lab at the Ronald McDonald house in New York is being remodeled.
Friday, April 14, 2006 9:49 AM CDT This picture is from Derek's birthday party. One of our dear friends sent Derek this train blanket. Derek did well at his parties. He got plenty of educational things but was most interested in an animal book. He has had a good week. Monday was speech at the school. Some things he does well with and other things not. He had signing on his birthday. Ms Kim brought him cupcakes and a Thomas train beach towel. We took him to eat that night for his birthday. He studied Easter on Wed at the library and had Ms Renee on Thursday. Our new ear molds came in and the fm system is fixed. We are packing and getting ready for NY. We leave Sunday and will be gone for two weeks. Please help us pray for safe travel, successful treatments and minimal IV sticks. We love you all and thanks for checking on us. Friday, April 7, 2006 1:59 PM CDT I have been so messed up this week. Our little buddy Cam went to be with Jesus on Sunday. He is pain free and happy I know. It is still difficult to even understand why children get cancer in the first place. I have always said if cancer itself was in human form I would love to kick it right in the mouth. I know that sounds crazy but we have seen child after child suffer. They are all outstanding children and the reason behind their illnesses we will never know. Now on to Derek. Each therapist changed days this week so every day I have had to check the calander. School speech was Monday morning. Derek did not do well because he was still sick. I wanted to cancel but also wanted the school to see how easy it is for him to get sick and stay sick. Tuesday we went to get our truck back. It was not fixed so back to Charleston Wednesday. I took Derek and Kayla to the library on Wed morning. The lesson was on seeds and growing things. They tasted several fruits and had a good time. At the end of class the teacher had them do some childrens yoga. Yes, yoga. Derek is not exactly yoga material but we sure did have some good laughs. The little girl beside him has no siblings and did not want the floppy boy beside her touching her. The more I tried to control him the more he touched her. I am laughing now at the thought. He also visit Dr K this week. We are going to have him tested after he returns from NY concerning his learning process and progress. She was pleased with him and he did not mind his visit. We showed her the spots on his elbow and back and she said it was molluscum contagiosum. Fancy term for virus of the skin that takes a year to rid. My sisters children have all had this so she helped me find info on it. Thursday morning Dereks signing instructor came. He is signing more every week. This will come in handy when we are outside this summer without aids. On Thursday night we visited a friend of ours who is a speech therapist. Derek did well with her and even sang some of his favorite songs. I am sure she would not mind me saying that he brought tears to her eyes. He has progress from when she first met him a year ago. Renee cancelled for Friday but we had plenty to fit in the day. My sister came to sign and then we got ready for Derek's birthday. We will be having cake with my crew tonight and Shawn's crew tomorrow. Derek does not realize it is his birthday but I am sure he will enjoy all the events. We are so thankful God has allowed him to be with us for 4 years. He and Kayla are both wonderful children and we love them so much. Thank you all for praying for us and sticking with us through thick and thin.
Friday, March 31, 2006 12:43 AM CST Okay I just lost my update and hope it does not happen again. We said good-bye Monday to our Cabell therapist. We are still trying to work out something with speech and our OT loaded us up with plenty of ideas. Derek did not do the greatest in therapy but some days are just like that. Tuesday he did great for ski-hi. We are learning big and little. He had speech at the school right after that and was unable to concentrate. Derek loved the library on thursday. We studies painters and then fingerpainted. He ended up making a trip to the Dr Thursday night. He woke up at 6 from a nap and had a fever of 103.6. He also had a barking cough and was wheezing. They gave him a breathing treatment and sent us home with treatments. I had to cancel therapy this morning because he still had a fever. Kayla claims she is a little under the weather also so it has been a cartoon day. Thank you all for praying for us and please remember our friend Cam in Florida. Friday, March 24, 2006 10:36 AM CST This week has been full. Monday Derek had Ms Karen and Shawna at Cabell. He did so well in speech that we were done in no time. He is working on saying words with b and d in them. He followed directions and even followed a page on prepositions. I was pleased with the session. Shawna gave me some oral exercises to try. Shawn and I had decided to introduce some new foods to Dereks diet ( corn and mashed pot.) and he threw up with each bite. Just another issue to work through. Ms Kim was sick Tuesday and Nausha was sick Wednesday so therapy was cancelled. I attempted the library on Wednesday again and decided to make it my last trip. The lady is soft spoken and reads right into the book. Derek could not hear or see the pages. We are going to stick with Thursdays library time in Milton. It is full of adventure and our teacher is aware of Dereks needs. Derek did well for Ms Renee on Thursday and she is switching her day to Friday for us so Derek can do the library. We have had revival all this week. It is hard on the kids because we do not get home until 9:30pm. Kayla informed me that she did not want to go any more because the preacher talked way past her bed time. We stayed home Wednesday night to give them a break. Derek was fitted for new ear molds this week. We were going to get his FM system fixed also but I forgot to charge it. Derek was acting up when we were in the office so I gave his leg a little pinch. Instead of calming down he yells " Ouch, ouch, help, help!" I was proud of him for using his voice but did he have to say that? He also took a big drink out of one of the ladies fountain pop cup before we could get to him. Never a dull moment!!! Kayla has focused on school this week and playing her keyboard. Derek will sit down during school and work with us. He now tells me "D e r e k" when I write his name. Shawn is on another shut down. Work work work! It does help when we leave town without pay. I have been on the phone each day looking for a grant, insurance, sponsor.... to help with Derek. Medicaid has dropped him since Shawn is working more. Shawns insurance does not cover speech or hearing aid issues. Derek needs speech so bad and all year it has been my project to search. Now all of you with sick children know how fun this project is. They reject you for being to sick or not sick enough. Please! Help us pray that God leads us the way we should go with this. The main thing is to stay no evidence of disease but clearer language sure would help. Thank you for checking on us and praying so faithfully. We love you all. Friday, March 17, 2006 7:44 PM CST Hello to everyone. This week has been out of routine but what is routine to a sick kid? Kayla had testing Monday and Tuesday for her home schooling. She loved it and wanted to test more. She called her testing lady Mother Goose and was very relaxed around her. My aunt and sister helped me with Derek and his therapies. They both reported to me that Derek did well. Wednesday and Thursdays therapies were cancelled so we made it to the library on Thursday. We were on our way to the Barboursville library on Wednesday and young girl in a small car decided to plow into the back of me. Thank the Lord no one way hurt. Our truck will be getting fixed but there was not much left of her car. We are enjoying the week end. We have two birthdays in our family so bring on the cake. Derek stayed in the room with all of us for most of the first party. He is making social progress. We have a full week ahead of us. I am hoping to get to the ear dr for new ear molds as well as see his 5 therapist. Derek has been singing "the more we get together" all day today. It seem like a big song for an almost 4 year old who does not understand what he sings. Thank you all for praying for us and our friends. We love you all. Friday, March 10, 2006 8:06 PM CST What a week!! To start I have two special prayer requests. Please remember the Davis family this week. Their new born daughter went to be with the Lord and services are this weekend. We also would like for you to pray for Cam and his family. Most of you know Cam was the first neuroblastoma child we ever met. We have become very close to his wonderful family and our hearts are so heavy. Cam's cancer is refusing to respond to treatment and he is home focusing on pain control. Pray that his parents can answer his questions and enjoy their time together. Saturday, March 4, 2006 11:13 AM CST Hello to everyone. We survived the week and I feel I see change in Derek. Monday he went to Cabell. He loves Ms Karen but really likes Ms Shawna's toys. Tuesday he did well with Ski-Hi as always. Wednesday we went to see Nausha. He talked more for her than he ever has. He uses the computer in her room with a microphone. He does not talk loud enough to activate the computer but he does speak in it. When we pulled up to the school Derek said" Woo(tongue click) der i i." That translates look there it is. He knew where we were. After therapy we headed to the park for a picnic and play. Kayla and Derek both loved it. We went to the library program on Thursday and enjoyed Dr Suess week. Some days Derek is more attentive than others. He did better at the library than he did at his church class Wednesday night. I left the class to see if Derek would pay any more attention. I watched him from the half door and he managed to behave the same. Thank you Ms Amy for being so patient. We are spending the weekend playing with Daddy and doing flashcards here and there. Kayla informed me that she didnt want home work this weekend. Nothing like telling your teacher you need a break. The best part of this week has been Derek singing every day. He sings in his own little language songs we all know. I can tell the song and it makes me so happy to hear him using his voice. Thank you all for your continues love and prayers. Saturday, February 25, 2006 9:34 AM CST I just wanted to update and let everyone know that we survived the week. Derek had 5 therapies and a dr visit crammed in 4 days. Thursday evening Kayla asked Shawn if he was off work on Friday. When he told her yes she said "Could we please have some fun!!" Her request was to play at Billy Bobs. So Friday we took Kayla, Derek and the antibacterial wipes for pizza and play. They loved it and it was a good moment to step back enjoy life. I was also reading in my Bible Friday and God sent me scripture from Philippians Chapter 4 that gave me comfort after the week we had. I have been going round and round with what would be the best education route for Derek. After I read this chapter peace came over me and I know God is in control. I knew that anyway but some times I feel like God wants to tell me "Chill out sister! I told you I would take care of you all, AND I AM!!! I am so thankful for that. We are scheduled for the same 5 therapies this week and a blood draw to check for HAMA. Thank you all for praying for us and loving us. Tuesday, February 21, 2006 2:34 PM CST Hello to everyone! We made it to WV Saturday at 3:30 in the morning. Due to high winds our flights were messed up. Derek got up at 7:30 and wanted every light on. He wanted "Tawa up!" She did not mind. They jumped on the bed all day long. Derek's Dr called yesterday and let us know his test were all clear. THANK YOU LORD!! We had speech and an OT eval at Cabell on Monday. Derek loved Wednesday, February 15, 2006 2:56 PM CST Derek has done very well this week with treatment. He slept thru Monday and Tuesday's and today's he sit and watched cartoons. No pain or hives all week. His IV went in the first try and has been working beautifully. Thanks for your prayers. Derek has a CT scan at noon tomorrow followed by 3F8 treatment followed at 2 by MIBG injection. At 9 am Friday he has his MIBG followed by 3F8 treatment followed by a plane ride HOME at 6 pm!!!!!! Please pray hard for his scans and his last two treatments. Thanks again for your many prayers. They are working and are very much appreciated. Friday, February 10, 2006 3:08 PM CST Sorry so long since an update. Derek did fairly well during treatment this week. The usual Monday was rough, Tuesday a little better and so on. Thank God his IV lasted all week. Not much else going on here. I guess we'll brace for the big snow storm coming Saturday evening. We are going to try to take the kids to see Curious George this weekend. Thanks for checking in. Please continue to pray that Monday's IV goes in good and lasts all week and for his CT scan on Thursday and MIBG scan on Friday. Friday, February 3, 2006 3:06 PM CST Two days until take off!! Derek has no idea and I am sure will not be pleased when he gets to the hospital. He has started recognizing places that cause him pain and cries when we go there. We had a full week of therapy. Derek was able to stay focused with Ms Karen on Monday. He did not understand a lot of what she wanted to do but he stayed with her. On Tuesday he had his signing instructor. He does so good with her. We give him a M-M when he gets something right and he makes anyone in the room bark like a sea lion. He had his pre-school/developmental teacher Wednesday and Thursday. He likes her and did well. We had deep talks about his next IEP meeting and what to do with him. Today he had speech at the school. Derek tends not to do as well for her but does like her. I also talked with her about his education and she intruduced me to the staff at her school. Shawn and I met the 4-k special needs teacher, her aid, an interpreter, and the counties signing teacher. They were all nice. We need to decide where to send him in the county if anywhere! It is stessful trying to find the right combo of professionals to help Derek in the way he needs. I know God will lead us the way He wants Derek to go. The main goal is to stay no evidence of disease. Please help us pray for Derek's treatment and test. Also, we have a special request. Our little buddy Cam is at CHOP currently to begin new treatment. He is in alot of pain from new tumors that have just grown. Please help us pray for him and his parents. Thank you all for loving us and praying day after day. God is so good!! Monday, January 23, 2006 12:24 AM CST Hello everyone! We have 2 weeks full of therapy and Drs before returning to NY. Derek's behavior has calmed down now that I feel better. He is scheduled for therapy Mon. thru Thurs. this week. He will be making a trip to the skin Dr and probably stop be the ear dr. I can not get his FM system to work so we are calling Kim to get it fixed. We are also getting an OT eval for him. Derek is hard to describe. He has hearing issues along with delays from 3 years of drugs. Learning is slow and in his own way. He and Kayla are such a joy to be with. They have started going in our youth program at church and some library story times. There is so much to learn and do. I am at a loss for words right now. The main thing is that we stay NED. Having him with us (no matter what mental level he is at) is a great gift! Thank you all for your prayers and support. We love you all! Hello to everyone! Derek survived last weeks therapies and sitters while I recovered. Some days were better than others but he is doing well. This week he only has 2 of his therapies. I am hoping that he does better with them this week. He is having his same skin issues again. The meds we use will clear his up for a short time only. I am going to contact someone tomorrow to get him looked at. Have a good week to all. Once again thanks for checking on us and praying. It helps so much!! Tuesday, January 10, 2006 2:29 PM CST We hope everyone had a good new years weekend. We spent the first week of 2006 in San Francisco. Thank you all for your prayers. All of my (Derek's Mom) tumor was removed and we are in WV now recovering with lots of drugs and extra help. Derek did well in San Francisco. We took flashcards and Shawn took him on walks each day to burn energy. Most of the time he was jumping on the bed being a "tan da woo, boing, boing, boing." He didnt understand why I am not 100% but is getting better at letting others help him. This week he has therapy every day. Some in home and some not. He is more emotional this week and not doing as well with his therapist. We are trying to push him through to a different level of learning. He can do the activities but is not impressed with someone else telling him when and what to do. I know he will learn in time. He came so far in 2005 that I am looking forward to the progress of 2006. This morning his signing instructor had abc blocks. He started singing his abc's in his own language and went to the end. We could tell the tune he was singing and some of the letters were clear. What can I saw he is a Bostic. Put it in a song and he will learn it!! Thank you all for your continued prayers and support. We love you all. I know if we needed anything we could call on family or friends like you. So, if I call saying Derek is hiding under the bed and I cant get him out dont be suprised. He has pulled this trick 2 times since we have been home and I am not allowed to lift! Tuesday, December 27, 2005 11:45 AM CST We hope every enjoyed Christmas. This is Derek's first Christmas in two years that he has not been recovering from surgery. In a way it was his first Christmas! We taught him how to unwrap a present and he was very impressed. Trains, dinos, animals, books.."Wow, wha dah?" My heart was so happy for him. Kayla was sick and ended up at the Dr. She did perk up at any mention of opening presents and enjoyed herself. We went to Ms Karen, speech at Cabell, on Monday. She could tell a difference in him since our last visit. She had done testing on him in Sept that showed him functioning at 18-24 month levels. We re-did the test and he was a solid 2 year old level. He learns in a different pattern that most kids but is learning. We drew blood for his HAMA today. After 4 sticks we got the amount we needed. He was so upset tears were falling on the table. He kept telling them "bye, bye." There is not really a way to reward him for all he goes through. Shawn and I decided to let him have b-q chips with his lunch. He would eat them around the clock but they make him potty alot so he has a limit. Tomorrow we go to get his ears tested with his new ear molds. I should just apologize to Ms Kim now. After todays blood draw he might not even get out of the car at her office! We are here until Sunday. We will be going to CA for my surgery and hope to be back after a week. Looking forward to being home to play and learn. Thank you all for checking on us and praying so faithfully. Monday, December 19, 2005 6:48 PM CST I want to thank everyone for their prayers this busy month. We will be home for two weeks and are very excited. Derek was glad to be home from NY and CA. When we got to CA he would not let us put him down for the first 30 minutes. He cried huge tears in fear that we were there for treatment on him. He lets us know very strongly through non-verbal communication that he is sick of the needles and drugs. There is no way to explain or get him to understand. He has all his therapies the next two weeks. We have talked to all of his therapist and are ready to push forward with his learning. Dr K wants him tested in April to see exactly where he stands mentally. Chemo, radiation and transplant can do a number on kids!! We are also still exploring his possibility of seizures. He will have bone density testing also in the next year or so. We draw for HAMA on Dec 26. Derek is jumping on my bed as I type this. He is using his hearing aids well and saying several words. Trying to put words together but just not there yet. He loves the tree and everyones lights. Last night was our Christmas play at church. At the end they had Jesus standing in front of a cross. He asked me "Wha dah?" I told him Jesus and he tried to repeat it. He has so much to learn and we are so thankful God has allowed him to live. Teaching him and Kayla is nothing but joy!! We hope everyone has a Merry Christmas. We are praying for our families and kids still in treatment. Thank you once again for praying for us. Saturday, December 10, 2005 7:18 PM CST We made it home late last night. It was great to be in WV. Derek did great this last week of treatment. He didn't need any pain meds and had hives only on Monday. He had his second Hepatitis immune shot on Friday. He has one more shot (I think) left and his reimmunizations are done. God has surely brought him a long way. Thanks for your prayers these last couple weeks and always. Saturday, December 3, 2005 10:37 AM CST Your prayers are being answered. Derek did really well with treatment on Thursday and Friday. So good he didn't need any pain meds. Praise God!!!!! He has been doing really well this trip. Eating good, playing good and just being a good little boy. Besides Monday and Tuesday when he finished treatment and tried to punch, claw and head bunt me when we were leaving the clinic. This was of course pain med induced. If you could see these kids go thru treatment and then side effects of the meds you wouldn't believe your eyes. If your kids are healthy you need to truly Thank God and be grateful. Spend all the time you can with them and love them with all you've got. Live life to the fullest and enjoy it. This life is temporary, all the heartaches and troubles. I thank God I am a Christian and when this life is over so are all the sorrows and pain. Well I think I'm done rambling on and I hope and pray you take something from this. We love and appreciate all that are thinking, concerned and PRAYING for us daily. THANK YOU!!!!! Wednesday, November 30, 2005 3:56 PM CST We arrived safely Sunday night in NY. Monday's treatment was rough on Derek. Tuesday's and Today's were better. Our little buddy Cam from Florida is here for testing so pray for him as well. 2 more days til the weekend! Please continue to pray Derek's treatments go well. Monday, November 21, 2005 6:13 PM CST I want to start by wishing everyone a Happy Thanksgiving and let all our families know we are praying for them. Last week was a dream. We went to Give Kids the World in Florida for Derek's make a wish. It was wonderful including the weather. This is a village for children with terminal illnesses. It is a week to forget about all the illnesses and have fun. Derek used his voice more than we thought he could. He loved having access to a train and carousel from 8 in the morning until 9 at night. The rest of us enjoyed the icecream from 8am-9pm. Everyone was so nice. It is an experience that can not be described. We did take 145 pictures to try and capture some of it. The sweatest thing was hearing Derek giggle on the rides. When he is excited he says "Happy, Happy Bir Day Tate." We heard it everyday and yes I teared up no less than 10 times a day. This week his pre-school teacher was to come Monday and Wednesday. She called to cancel both appointments this morning. He has his signing class tomorrow and a trip to the ear dr for new ear molds. The big event of the week was a trip to the dentist. They worked on the colored spots on his teeth to see if they were permanent. They used heavy duty (gritty) toothpaste and his teeth do look better. It did not all come off but should not harm his teeth. No cavities!!! I was explaining to them that he had the mind of a two year old and did not know how to spit. Less than 5 minutes later he started vomiting on them and made about 4 messes before we made it to the truck. I still call it a successful trip!!! Thank you all for checking on us. We leave Sunday for 2 weeks treatment in NY. I know you will help us pray that the treatment goes. We love you all. Tuesday, November 8, 2005 9:41 AM CST ** Get our new email address at bottom of page **
Friday, November 4, 2005 12:26 AM CST NY called and all of Derek's scans show no evidence of disease!!!!! Praise the LORD!!!!! Thank you for your many prayers for Derek. We leave next Saturday the 12th for Disney compliments of Make-A-Wish. Kayla and Derek will have a blast. We are home for a week then we leave for NY the 28th for 3F8 treatment. Thursday, October 27, 2005 1:36 PM CDT We arrived late Tuesday evening because of weather. Derek had blood work, CT scan, bone marrow aspirates and a MIBG injection on Wednesday. Today he had a Hepatitis B vaccine and MIBG scan. He did well thru IV and sedation. Thanks for your many prayers. Continue to pray for clear test results. Wednesday, October 19, 2005 3:24 PM CDT Hello everyone!! We have been having computer problems again. We will be switching services so I will let everyone know our new address. Derek had speech with the school last week. She did a lot with him. He is having personality issues with her but I hope he gets to know her better. The things he refused to say on Monday with her he said Tuesday with no problems. Our signing instructor comes on Tuesdays. Derek is use to her and does well. She is helping me with my signing and my sister practices once a week also with us. Our signing instructor was sick this week so Tuesday was a free day to play and read. His preschool/developmental teacher had surgery and her sub has not called for 2 months. This is a big let down but his teacher cant really be replaced anyway!! Speech at Cabell has been the key to Derek's progress. We are doing mail in visits through this winter with Ms Karen and John Tracy clinic. We will miss Ms Karen but hope to show her big changes by spring. Derek is happy being Derek! He loves his animals and books. He tries to sing everyday and makes Shawn and I so proud. His hearing aids are great. He says so much more. We know most of what he says but still has trouble hearing and saying certain sounds. We are going to NY next Tuesday-Thursday for testing. Please help us pray that things go well and test are clear. We love him so much and want nothing but good for him. Kayla is doing more with her homeschool group and enjoying it. Thank you all for checking on us and praying so faithfully. We love you all!! Friday, October 7, 2005 7:02 PM CDT Hello to everyone! Our computer has been messed up so we have not been able to update. Derek did well in NY. He had pain and hives almost every day but the pain meds helped. He ate and slept well. We used undies every day!! We made it home Friday night at midnight. Derek had withdraw the first night but is better. He has the change of the weather nose runs. He had speech and signing this week and the school will start coming next week. We got new ear molds this week with dry tubing. This will help with his feedback. Derek is saying more words and playing well. What more can we say but we love the little guy!!! Thank you all for checking on us and praying so faithfully! Sunday, September 25, 2005 1:56 PM CDT Hello from NY. Derek did fairly well last week except for Tuesday. He kept his IV until Friday morning. His eating and behavior has been good as well. We got to go see "The Lion King" on Broadway Wednesday afternoon. Cheryl and the kids loved it. Pray that Derek has a good week and Friday's travel will go well. Wednesday, September 14, 2005 9:08 AM CDT This is my second attempt to update this week. I have high hopes that this time works. We had Derek's meeting with the school last week. We will be adding speech and a developmental teacher to his week. He already has his other speech therapist, signing instructor and lessons from the John Tracy Clinic in place. His weeks will be busy with education while we are in WV. His Cabell speech therapist tested him and has graded his speech level between 18mo- 24mo. We knew we were behind but are working every day to see progress. We do see him changing every day. He is 3yr and 5mo old and 37 pounds. Thank you LORD!!! We are working on learning body parts, recognizing someones voice, and continued potty training. This is huge since in January he still did not realize he was in the world. Love the hearing aids!! Our Mommaw Hazel (80s) had her birthday party out side this weekend so we are all congested this week. I am limiting play to indoors trying to get everyone cleared up for NY. He had signing class and Cabell speech this week. We have been playing, cleaning and packing. More playing than anything. We will leave Sunday for NY and be gone two weeks. Our make a wish should be in Oct but things are moving slow. (Long story). Thank you all for checking in on us and praying. I already dread the needles and drugs we are getting ready for. I can not complain though because we still have Derek to hold and love. I must say we do alot of both!! Kayla has her school books ready to go with us and is doing well. We love you all! Tuesday, September 6, 2005 11:38 AM CDT I hope everyone enjoyed their holiday weekend. We had family over to eat and swim. Derek and Kayla both loved it. We were all asleep early last night. Derek had the school come to re-evaluate him last week. He was happy to see his preschool teacher. Her test kit has lots of stuff to dig in. The speech therapist came with her. Derek did not have an instant connection but we will give it time. She had a more educational approach to her speech goals. Miss Karen from Cabell understands the drugs and illness and takes his speech from a different route. They will be calling me to set up a meeting and therapy days. He is doing well with his signing instructor. Not that he is signing more but works with her well. Kayla started school this week. We are having fun with that. She has also learned to ride her bike this summer. We will be leaving for NY in 2 weeks. I also wanted to ask you all to say a prayer for one of our transplant girls family. At age 3 she went home to be with the Lord last week. We also have a friend ready to go be with the Lord. It is hard on her family and my heart is so heavy for them. Thank you all for your prayers and support. We love you all. Monday, August 29, 2005 8:10 AM CDT God is good!!!!! We love our babies (3 and 5.) Derek had a good week. We spent time with cousins before they returned to school. Derek does not directly play with them but he is aware they are around. If one is willing to chase him, he will gladly run and squeal. His song of the week is Dee Wii Wiii (Deep and Wide.) He has signing class and speech this week. I am not sure when the school will call me to do his other therapies. Kayla will start her schooling next week. We are spending the rest of the day reading, singing and playing games. I like the change I see in him and it makes me want to see more and more. Thank you for checking on us and praying so faithfully. Tuesday, August 23, 2005 7:56 AM CDT I knew better than to write last week would be uneventful on a Monday morning. Wednesday Derek's signing instructor came to start his school year back. I learn from her but Derek thinks she is a toy. We went Thursday to get Derek's new ear molds. They seem huge but he is keeping them in. We are researching insurance to see about getting him his permanent hearing aids. It doesnt seem right to turn down a kid for hearing aids when he cant hear. You all know how insurance is!!! Friday he had speech. He loves his therapist and does well with her. It amazes me to think how much he still needs to learn. When I say he has 50 words now in one way thats great and another keep going and going and going!!! Learning never stops!!! He has been eating and sleeping well. We are enjoying our last few weeks here and playing as much as learning. Thank you for checking on us and praying faithfully. Monday, August 15, 2005 8:51 AM CDT Good morning to all!! We had a great weekend. We spent alot of time with family. Derek and Kayla loved the attention. Derek is doing a program with his speech therapist that he loves. We practice his cards at home and he is using the words he has more often. He has been pulling his hearing aids out lately. We are still waiting on the new ear molds to come in. We found out that he still has C-Diff. Dr. K called NY and they decided to not give Derek more drugs unless the symptoms worsen. We can not use the same meds anyway. We only have 1 appointment this week. Thank you all for checking on us and praying for the big and little things. Wednesday, August 10, 2005 8:09 AM CDT Hello to everyone!! I logged on this morning to find an e-mail from NY. Derek did not HAMA so we will be going back to NY mid September for cycle 9 of his 3F8 antibodies. He is having a good week. I am not sure if his meds for his skin are working but I am being faithful to use it. I was thinking yesterday about the things he has gained this summer and had to smile. We roll a ball back and forth while counting to 10. His words are not clear but you can tell he is counting. We have also been coloring everyday working on basic colors. His favorite is "oje" orange. He has also been using the potty for two weeks. Keep in mind the he would never tell you he had to go. We are getting good at catching him at the right time. We are enjoying our stay in WV and loving our kids deeper and deeper every day. Thanks for all your prayers and support. Thursday, August 4, 2005 9:56 AM CDT I wanted to update after we made it through yesterday. We started out by having blood drawn at Cabell. It was mailed to NY to see if Derek has HAMA. Then we went to get Derek's hearing aids adjusted. Now that he is use to them Kim made them more compatible to his hearing loss. After this we went to speech. Derek did not do well due to hunger and fatigue. We decided to try again next week but have homework in the mean time. All this was done in Huntington by noon. Then we drove to Charleston for a visit with Dr. K. After a two hour wait she had a good visit with him. She gave us a med. for Derek's skin issues. We will also give him a year with his hearing aids before doing mental testing. It is no secret that kids that have the amount of drugs cancer kids have take longer to re-learn and learn things (with some exceptions). We returned home at 4 and within 15 minutes Derek had produced stool for us to run to St. Marys. At this point we put on our church clothes and ran to the drug store while we were out. We are enjoying being home. Play some learn some..... I am working on his counting and colors. His words are not clear but the effort is there. He gets lessons from a clinic in California that has taught me a lot. We love our Kayla and Derek so much. Thank you all for checking on us and praying day after day. Wednesday, July 27, 2005 8:24 PM CDT We made it home on Saturday. Derek had a wild two weeks in NY. They were full of pain and meds. The test that we have back are good. Thank you Lord!! He has an issue with his CT scan that we think is related to the C-Diff. We will be retesting him for it soon. If it is not gone we will try one more med. They told us he may be a permanent carrier of it. We are praying that he gets rid of it because it can lead to more serious problems. God is in control!! Derek has enjoyed being home. He has played and kept up with his learning. I wish you all could hear him laugh when Shawn reads him his bed time story. He has been telling me "li lu lou" (I love you). That puts the biggest smile on my face. He has speech this week and some appointments next. Kayla is doing well. She got her five year old shots this week. Her main focus was getting a milk shake after. She is a good girl. Thank you all for checking in on us and continued prayers. Thursday, July 21, 2005 2:22 PM CDT Sorry so long. I came down earlier this week and the computer room was closed. Derek has done really well with treatment this week except for today. We should have figured for it since he had to be sedated for the CT scan. They don't like to give pain meds and then put the kids to sleep but he was in alot of pain so we had to give him a dose. He woke up crazy kicking and punching everything and everyone he could get his hands on. Pain meds and sedation are not a good combo. He acted like he had 3-4 doses of Diuladid (pain med). He was crazy for about an hour after waking up. Pray that tomorrow he does alot better with treatment and doesn't need pain meds. His MIBG scan is tomorrow at 2pm. We will be home Saturday afternoon. Thanks for your prayers!! Saturday, July 16, 2005 1:26 PM CDT One week down!! Cheryl, Kayla and Derek are taking their afternoon nap so I came to the computer lab. Derek is doing some better during treatments. We are doing urine collection on Sunday. Ct scan is Thursday and MIBG is on Friday. Pray that his treatment goes well next week and his IV goes well and lasts all week again. We went to breakfast then went to Central Park for a horse & buggy ride. Derek loved it. Thanks for checking in and the prayers. Wednesday, July 13, 2005 3:28 PM CDT Sorry so long since the last update but it has been crazy. Our flight was delayed an hour from Philly to NY, then our bags didn't show up with the flight. We got to the RMH at 11:30 PM. Derek had a rough day on Monday. Finally at 8:30 PM Monday our luggage showed up. Yesterday was another rough day for Derek and he spiked a 103 temp yesterday evening. Some Tylenol took care of it and he is fine now. Thanks for the prayers. He had a good day today. Pray his remaining treatments go good and tests go good and are CLEAR! Thanks again for the many, many appreciated prayers!!!!! Monday, July 4, 2005 9:14 AM CDT Happy 4th to everyone. We are going to my aunts to watch fire works tonight. This will be Derek's first experience with them. He is doing well. We are attempting to return to undies this week while we are at home. He finished his C-Diff med Sat and is doing better. We have been doing alot of reading and singing to him this week. He has picked up words and hums tunes. His speech is not clear but his effort is there. He has bonded well with his new speech therapist and does well with her. I am not sure which one gets the work out. When he feels good he is a typical 3 year old boy. I love it!!! We will be leaving Sunday evening for NY. We will have 2 weeks of treatment. At the end of the second week we will fit in testing. I know God is able to answer small and large prayers so here is your assignment for us. The small would be that they get an IV in and the large is to remain no evidence of disease. Thank you all for your continued support. We feel your prayers and appreciate them all. Monday, June 27, 2005 8:08 AM CDT We had big plans of having an eventful week last week but things never go as planned. We called Dr. K about possible C-Diff and she called him in meds within the next five minutes. We love that woman!! He will be on meds four times a day for 10 days. Things are slowing down but there is no chance of returning to undies this week. We were using 10 diapers a day. He has only vomited his meds 3 times since Wed. Not bad!! On the other hand Kayla has picked up a bug that left her vomiting Thurs, Fri, and Sat. I could taste carpet cleaner all day between the two of them. They are both better and we are starting a fresh week. We have speech and a hearing check this week. We hope to spend the rest of the week home painting, reading, and playing. We have two weeks until we return to NY. Thank you all for your prayers and have a good week. Tuesday, June 21, 2005 8:29 AM CDT I am so shocked that the computer is working. I am not sure what to write!! Derek has been doing well the past few weeks. We have been busy with getting his speech lined up and Kayla's home schooling ready. Derek has been wearing his hearing aids well and is showing signs of mental growth. We catch him reading the books we read him and enjoy the verbal efforts. He likes to read E B Pie ( Itsy Bitsy Spider) and color in Bo Bo Bobber ( Bob the builder). He has been doing some of Kayla's basic computer games and playing with her. We are working in a few fun things this week around the appointments. Yesterday he spent a few hours with Gran and we are going to have lunch with aunt Jo Jo also. He is interacting with family better and understands several 1 step commands. He used the potty at home all last week with only a few accidents. This will help with his urine collections in NY this time. The less pain he has the better. Yesterday he had a belly ache and pottied 7 times. We are wondering if he has C-Diff again. We watch his diet very close and know it was not his intake. We will call Dr. K today if he continues. Thank you all for checking on us. We love you all and are thankful for the many prayers. Tuesday, June 14, 2005 10:00 PM est Sorry no update in so long. Our internet service has been messed up here lately. Derek continues to do great. As you can see we updated his picture. This was taken Saturday at Beech Fork Lake. Derek had a blast. Thanks for your continued prayers and support. Tuesday, May 31, 2005 8:33 AM CDT Good morning to all! We found out late last week Derek did not HAMA so we will be spending a large part of July in NY for retesting and 2 weeks of treatment. Derek is finishing his home therapy for the school year and should have Developmental Therapy come for speech over the summer. We picked up his new ear hearing aids Friday and he is doing well with them. Shawn and I are learning as well what environments they will and will not work in. We were able to see both sides of our family this weekend. Kayla celebrated her 5th birthday with her cousins. Derek even join in a round of ring around the rosie. That is a huge step for him. He usually wants to stay off by himself and did so most of the time. Thank you all for checking on us and praying so faithful.
Monday, May 23, 2005 12:34 AM CDT Hello to all our friends and family checking on us. Derek managed to break one of his hearing aids last week so we added an extra trip in the week to let Kim fix it. We had to make new ear pieces and they wont be in until Friday. We are staying in this week and have Ski-Hi and Derek's teacher scheduled. He has had a fever since yesterday and we are still watching it closely. Since he has no central line Shawn and I are believing it is a fever attached to something minor. In the world of cancer not very many things are minor so please help us pray. We are going to try to have pictures taken this weekend and I will have Shawn update Derek's picture. We will hear from NY in the next day or two. Thank you all for your prayers and concern. Monday, May 16, 2005 3:08 PM CDT Last week was quite busy and this one is not much different. Kayla did finish her K-4 home schooling and is now focusing on her birthday party. We talk about it everyday and it is not until June. She is such a good kid. I watched her in NY this time and wondered how anyone could say she will miss social skills by being home schooled. To watch her talk to nurses and play with kids from all over the country is beautiful. She does not see their illnesses and loves them like she has always treated Derek. Besides a trip to Kayla's dentist the rest of the running is for Derek. His preschool teacher will be here 2 times this week. His signing instructor from Ski-Hi is Tuesday and we draw for HAMA on Wed. Please pray for this effort. Last HAMA draw took 4 sticks and much digging for blood. We are going to have Melissa from Cabell draw it so things should be better. Derek is doing well with his hearing aids. He is having us read to him all the time. I feel like he has gained a word a day since Wed. Thank you all for your prayers and we will let everyone know our HAMA test results when we get them. Tuesday, May 10, 2005 1:53 PM CDT We made it home late Saturday night and have not stopped since. Derek did well with his treatments. Praise the Lord test were clear. We were able to spend time with friends and enjoyed being together. We flew to Duke on Friday night for Dereks survivor walk. Saturday was a wonderful full of emotions kind of day. Just to be a transplant survivor is a huge step. We saw 2 of our kids from transplant and several Dr.s and nurses who took care of Derek. Derek and Kayla both enjoyed the activities and characters for kids. They had a memory wall with some of our kids on it and 3 kids from Cabell. Looking back is painful but God has gave us many beautiful memories. Most of all we have a full of energy 3 year old to love on. This week he will have 2 home visits and a trip to the ear doctor. The rest of our time we are going to play, play, play!!! Thank you all for checking on us and for being so faithful to pray for us. We love you all! Wednesday, May 4, 2005 10:43 AM CDT Derek continues to do very well. He hasn't had any pain meds since last Thursday. He has had no hives or pain that we know of. The nurse said today she would be suprised if he didn't HAMA this round. This may or may not be our last treatment only God knows. If we have to come every 2 months for another year then so be it. God has been in control and will continue so. I pray he blesses and helps Derek as only HE can. Thanks for your many, continued and much appreciated prayers. Thanks and GOD BLESS. Friday, April 29, 2005 1:54 PM CDT Derek's MIBG scan and bone marrow biopsies are negative!!!!! Praise God!!!!! Derek has done very well this week with his treatments. He is free for the weekend. We are going to try to go to the Children's Museum tomorrow since it will be raining. Thanks for your many prayers. Sunday, April 24, 2005 4:05 PM CDT We arrived in NY Wednesday. Derek has finished his scans and they told us Friday his CT was clear!!!!! PRAISE GOD!!!!! We will know the rest this week. He did really well Thursday and Friday. He starts treatment on Monday so keep him in your prayers. Sunday, April 17, 2005 9:50 PM CDT First of all I want to thank everyone for their birthday cards and wishes. Derek would take them to the table to color like he had paper work to do. We have to see Dr Harris this week for his 3 year check up. Other than that we will be packing, cleaning and making calls to wrap up business here. Wednesday we will be flying to NY to begin again. We are using different airlines and airport because of ticket prices. Thursday and Friday are full of test. Derek will have a CT, MIBG scan, immunizations, bone marrow test, and urine collection. These are all day events by the time we sedate and transport. The following two weeks will be round 7 of Derek's antibody treatment. We are looking forward to seeing one of our little buddies that we met almost 2 years ago. God has ways of putting people in our lives and the first child we ever met with NB now doctors in NY. His mom has been so kind to guide us through each phase of the treatment. The Friday Derek finishes his antibody we are going to fly to Durham. The transplant unit has a Rainbow of Heroes Walk each year to raise money for families in the unit. Their are not many children still alive from our 16 bed family but we have high hopes of seeing some of our survivors, families and staff. I hope everyone has a nice week and thank you all for your continued prayers. Monday, April 11, 2005 2:36 PM CDT HAPPY BIRHDAY DEREK SHAWN!!!!! Monday, April 4, 2005 7:52 PM CDT Hello to everyone from sunny WV. Derek was able to go outside today. His body went as fast as his little legs would take him. He would go to the swing, slide, garden and then up to see Abby dog over and over. He is such a joy to watch. Kayla is so willing to follow and play where ever he lands. This week we are doing our closing meeting with birth to three. We are also making at least one trip to the hearing doctor. We are going to try to test his ears one at a time one more time. If we are not successful he will have to be put to sleep for the test. We are praying that we can get accurate testing without sedating him. We have plans of spending the weekend with our families. Derek is turning 3!!! Thank you Lord!!!! He wont realize that it is his birthday but he will enjoy being around our families. Thank you all for checking on us and praying so faithfully! Sunday, March 27, 2005 8:16 PM CST I am sorry it has been so long since we updated. Our computer has been ill. Special thanks to uncle Mike for getting us back on the right track. Last week Derek had speech, and a meeting with our service coordinator. We also had a 2 hour meeting with the board about transfering Derek out of Birth to Three. We have recently found out that Derek's hearing issues are more involved. We have been approved for a system to help him with some of his loss. We are trying to get him ready for the device as well as get the device. Depending on how much the device helps we will be deciding on if we want to use sign language with him or another type of communication. His system will eliminate back ground noise for him so he can focus on one voice. However he also does not hear sounds that you dont use your vocal chords to say (s, ck, f, t, ect.) I read him a book often that says "What a mess!" Derek always says back to me "Ahhh mehh!" Please help us pray we make the right decisions for him. The ultimate battle is the cancer but we all know how other things appear post chemo drugs. He is perfect in our eyes no matter what changes we make. This week he has nutrition, a visit to Dr K and probably hearing exams. Derek went to my sisters for an in door egg hunt this weekend. He did interact with some of the family but was not impressed by the egg hunt. We tried it again today and Mommaw Hazels and he found 8 eggs. He was more impressed with her goats than the eggs. He is such a blessing. Last Easter he was so sick from transplant he didnt know what the holiday was. We hope everyone had a wonderful Easter. Take a moment to remember what our Saviour did for all of us. Thank you all for checking on us and praying daily.
Tuesday, March 15, 2005 8:07 AM CST Last Wednesday we went to Charleston to get Derek's HAMA test drawn. After 2 attempt to draw blood with no success we decided to take a break. We had Derek drink a fountain pop and eat some chips in hopes of hydrating him. Tammy and I called people on the cell phones to tell them to pray while he ate and drank. After 2 more attempts we finally got the amount we needed and then it was a race to the post office to mail the blood to NY by noon. The post office decided to refuse to mail it for me so I walked down the street to a fed-ex for delivery. Tammy and the kids sat in the truck while I did this. When I returned they informed me that someone had backed into the truck. This was alot to pack in one morning but we all survived and now are waiting for our test results. Derek has home appointments this week still converting from birth to three into the school program. I will give more details when I find out myself. Derek is enjoying his stay at home. Painting has been the attraction of the week. He is feeding himself more and eating a better variety. Thank you all for your prayers and for sticking with us the past year and a half. Tuesday, March 8, 2005 3:26 PM CST Last week we made a trip to Charleston to see Dereks Dr. K. You probably remember us talking about her in the beginning of Derek journals. She moved offices on us and we decided to follow her. She knows 2 of our NY doctors and has experience with neuroblastoma. We only wish we could take our Cabell crew with us to Charleston. Our visit went well and we feel the communication gap between WV and NY will now be filled. Tomorrow we will draw blood to send to NY for Derek's HAMA test. Our appointments and testing for his development continue weekly. The days we have off Derek spends playing, working peg puzzles, and looking at animal books. Kayla continues to do her home schooling and has spent the rest of this week talking about her new 6 pound baby cousin. Thank you all so much for your prayers and support. We face every day knowing that we are not alone and thank God for you all. Tuesday, March 1, 2005 9:37 AM CST We made it home Friday night and have not stopped since. It is so nice to be home in WV. We did have a good trip to NY. We were ready for the weather and accepted that we were stuck in the Ronald for most of the time. Derek covered alot of issues while we were there. He finished his meds for his bowels and is doing great with that. We also had them look at his chest. It has been having problems healing since December. It is starting to heal and will just scar bigger. He had 50% less pain meds with his treatments. This is due to timing and his body starting to recognize the antibody is foreign. He does have some hearing issues but we are working on them. They seem minor in the big picture. Most of all we came home with great test results!!!! We are so thankful and will not be retesting for 3 months. We are spending this month finishing up things with birth to three and converting to another program for his speech and development. We love you all and want to thank you once again for sticking with us and praying so faithfully. Monday, February 21, 2005 1:48 PM CST Derek continues to do well with treatment. Thanks for your continued prayers. We got to go to the Museum of Natural History and went through Central Park and saw "the gates". Big waste of money! Derek loved the animals at the Museum. Derek's blood work today was all in the normal range except his hemoglobin which was just 0.5 below normal. This is HUGE considering his blood work has been below normal since August 2003. Many answered prayers! Thank you God!!!!! Tuesday, February 15, 2005 2:00 PM CST ***Bone Marrows are CLEAR!!!!! 2/16/05
Saturday, February 12, 2005 2:28 PM CST We arrived in NY Wednesday evening. Derek had a long Thursday and Friday of testing. He did pretty well through it all. He is in the room trying to get in a much needed nap. We are off for the weekend and just trying to relax. Everyone up here can't believe how big Derek has got. Please continue to pray for great test results and Derek to do well through his treatment starting Monday. Tuesday, February 8, 2005 8:08 AM CST Well it's back to NY tomorrow. Derek's little bowel problem seems to be getting better with his medicine. He has been doing very good. We arrive in NY tomorrow evening. Thursday he has CT scan, Bone Marrows, starts his reimmunizations and gets his MIBG injection. Friday is his MIBG scan and hearing test. Please pray for a safe trip but most of all for CLEAR tests and Derek to do well during his treatments. We will be back home Feb. 25th. Monday, January 31, 2005 9:27 AM CST We decided to call Cabell Friday due to Dereks continued bowel problems. We found out after 2 weeks that his stool was never tested for C-Diff. We were told that they didnt know what was wrong with him to call NY. We had already been in contact with them Thursday night and confirmed Friday morning that we needed their help. They called Derek in some meds to help his month long problem. When we picked it up the pharmacy had filled the med in pill form. We crushed it up in his drink. Shawn and I tasted it and it was so bitter we knew there was no way Derek would drink it. Here it is Monday and we are back on the phone to NY getting another med that comes in liquid form. Thanks so much to NY for taking Derek's problem serious. Derek is playing and enjoying his toy animals. He worked three peg puzzles this morning and that always makes me happy!!!! Thanks to all of you for helping us through the big and little stuff involved with this disease. We dont know how to express how much your prayers mean to us. Have a good week! Monday, January 24, 2005 1:07 PM CST This is my third try to update. I am sure you all are saying been there done that. Kayla and Shawn were able to play in the snow this weekend. Derek and I watched from the window. He kept trying to open the door. He enjoyed them throwing snow at the window. Derek is still having problems with his bowels. He also has a little infection in the same scar as the last time. We have 2 weeks until our next journey. We are not looking forward to the snow. We are ready to get back to Dereks Dr. NY is aggressive and we need this with Derek's disease. Thank you all for keeping us in your prayers. Wednesday, January 19, 2005 9:42 AM CST Last year this time we were packing my parents camper to move to NC for 3 months. It is so nice to say we are staying in WV this January. Derek has been off his antibiotics for 2 weeks and still is having problems with his bowels. He does not eat anything that does not go straight through him. We are waiting on results from Cabell of his stool sample. He ran a fever on Saturday and Sunday so we decided to have some test run. He is going to have a hearing test in NY on the first Friday we are there. This week has been full of farm animals and trucks for him. He is so loving and content to be home. We thank you all for helping us fight this battle with us. Your prayers mean more than we could ever express. Monday, January 10, 2005 2:16 PM CST Last week was a little frustrating so I chose to wait until today to write. Derek's infected line sight finally opened on Saturday. Shawn and I cleaned it out and are doctoring it. We are praying it will not get infected again. He has finished his meds for the infection however his tummy and bottom forgot to stop acting like they were on antibiotics. We had a good visit with his speech therapist on Friday. We will be checking into a second opinion hearing test when we get to NY. Derek is hard to explain but living with him 24/7 allows us to see where he can and cannot communicate. He will be starting his vitamin on Monday since the accutane is finished. He is into animals, peg puzzles, and play-doh right now. As Kayla does her school work, Derek works on these things trying to make since of the "normal" world he is not use to living in. Thank you all for all your love and support. We dont have the words to express how much it means to us when you say or write you are praying for us. Monday, January 3, 2005 7:18 PM CST We hope everyone had a wonderful Christmas and New Year. We pray the new year is happy and HEALTHY for all. Dr. Kushner e-mailed and said Derek's immune function test is GOOD!!!!! He also finished his Accutane yesterday. In a way I'm glad and on the other hand it's another worry. Only the other cancer parents would understand. Please say a special prayer for all the kids and families we have met at Cabell Huntington, Duke and MSKCC. Some are still with us and some have gone to heaven. They are still in our thoughts and prayers daily. May God Bless all of you!!!!! Thursday, December 30, 2004 10:40 AM CST What a busy weekend. Derek stayed to himself at most of the family gatherings. Kayla didnt mind opening his things and hers. Monday morning was back to Cabell for infection in his incision on his chest. They did not open the area this time but it is not improving as of today. He is on antibiotics for 10 days. We are still learning how all the new toys work. Thanks to all our family and friends who shared this Christmas with us. We hope everyone has a Happy New Year. Thursday, December 23, 2004 9:54 AM CST We want to wish all our family and friends a very Merry Christmas. Last year we were recovering from surgery, needing blood and packing for transplant. What a year!! We are so excited we will be able to take Derek to our Mom's for Christmas with nothing but a runny nose this year. Thank you Lord!!! We have kept him in this week and skipped the small parties so he could enjoy the weekend. If you are wondering why he is not smiling in his picture his mouth is full of crackers. He refused to sit for a picture without a cracker. Getting their picture is such a "fun event", we gave in to him. We hope you all have Happy Holidays and know we are enjoying ours thanks to all your prayers. Please remember all our friends in NY, NC, and WV who are still fighting or have gone to be with the Lord this year. My sister painted an ornament for them for our tree. They will never be forgotten and always be loved in our hearts. Take care and thanks once again. Sunday, December 19, 2004 6:32 AM CST Good morning from the hills of WV. I am so happy to be home that I cant sleep. Derek survived his second week of treatment. His reactions to his shots grew. He began to have fever, hives and large red areas at the sight. His Dr told us we would have to just stop the shots for good. We are trusting God will provide where the shots will not. Derek was crazy during treatment for a few days. We could not figure out why he was so frustrated and in pain. He did better without the shot on Thursday and Friday. We usually leave the hospital with him in the midst of a wild spell or sound asleep from drugs. I think he knew Friday we were done for a while. He walked to the elevators with no turning back. Everyone was watching him. Our suitcase did not make it to WV. We are praying it arrives today. Derek has meds in it that he needs. We are thankful he has not had withdraw from his pain meds. He slept in his bed last night. When we made it home Derek did something he has not done in a year and a half. HE TOOK A BATH!!! What a wonderful Christmas gift!!! He has had sink baths since we found out he was sick because of his central lines. For the first time since he was 15 months old he does not have any extra hardware sticking out of him. He loved the toys and bubbles. He gave me high fives and played until his fingers were wrinkled. Kayla helped him play while Shawn had the camera. We tried to capture the joy on his face. Thank you all for keeping in touch with us and praying for us day after day. We love you all.
Sunday, December 12, 2004 10:01 AM CST Derek has been doing well with his treatments. Just one more week left!!!!! His site where his line came out healed over quickly and infection started behind it. They had to lance it and clean it out. Then they packed it with gauze in which I had to put him in the bath yesterday and take it out. Not cool!!!!! He didn't pay a bit of attention to it. He didn't even flinch. The site looks good. Pray it heals up for good this time. He is having reactions to his shots. Friday and Saturdays shot sites are still red and puffy. I didn't give him his shot today. We'll talk to them tomorrow and more than likely not give him his shot this coming week. Other than all that things are going well in NY. It has been cold and rainy. The rain is supposed to stop for a few days and just be cold. Pray Derek does well with his treatments this week and everything else goes smoothly. Wednesday, December 8, 2004 3:05 PM CST We arrived safely ot NY and had a good trip getting here. Derek has done very well with his treatments thus far. Yesterday and today he didn't need oxygen and had minimal pain. Pray he continues to do this good. The surgeon looked at his old line site. It was red and warm yesterday. He started Derek on an oral antibiotic and we are putting Bactroban ointment on it twice a day. It looks much better today. Just 10 more days!!!!! Friday, December 3, 2004 9:28 PM CST We started our day with a trip to the bank and a few other stops. While we were out our outpatient nurse called to tell us that Derek had another line infection. She wanted to know if he had already ate breakfast because she had already talked to a surgeon about removing the line. We went straight to the hospital. Shawn was able to stay with Derek while they removed his line. They made a small cut and put one stitch in his chest. We are doing around the clock antibiotics for a week in a temporary line in his arm. He also had yeast growing in his cultures so we are taking an oral med. for a month to clear this up. Derek is a little grumpy tonight. We gave him tylenol and he has ate well. We will be traveling to NY with the pump and drugs. Thank you all for your prayers. We will be updating from NY. It is so hard to put into words what your support means to us. Thanks!!!!! Tuesday, November 30, 2004 6:08 PM CST We have finished Derek's antibiotics. We went today for some meds and to draw cultures. We should know in 2 days if we are clear of infection. The count down is on until we leave for NY. We are slowly packing and wrapping up things in WV. We should leave on Sunday and return the 18th. Take care and enjoy this month. It is moving so fast. Thank you all for your continued support and prayers. Wednesday, November 24, 2004 9:25 AM CST We would like to take the time to wish everyone a Happy Thanksgiving. My mind has been going full speed ahead this week of how thankful I am but I know I could not put it into words. Derek is still on around the clock iv antibiotics and will finish on Sunday. He will then be retested to see if the infections are gone. We hope everyone enjoys their holidays and thank you all for your prayers. Between WV, NC, and NY we have witnessed at least 10 little friends go to be with the Lord this year. Please remember their families this holiday season. May God bless you all. Friday, November 19, 2004 2:02 PM CST It is Friday and Derek has survived a busy week. We are still doing around the clock iv antibiotics. He had a visit to Cabell for other meds Monday, 2 speech visits, 1 nutrition visit and 3 home health med drop offs this week. He is getting use to familiar faces and is not uncomfortable around our home therapist. He has about 10 clear words that he will say and has added some meat to his diet. We are still working on the fruits and veggies. We are learning to hide healthy food in what we cook so if you ever eat at our house it is hard to tell what you would actually be eating. We pray everyone has a safe and fun weekend. Thank you for all your support. Sunday, November 14, 2004 3:44 PM CST As you all know we have been waiting on our test results to all come back for over a month. Today we got an e-mail from NY saying that our CT and MIBG had no signs of neuroblastoma. I was home with Derek while Shawn and Kayla were at church. I had to cry, shout and praise God for taking a 100lbs. brick off my chest. Derek thought I was crazy because I kept squeezing him. I could not wait to call Shawn and our family. I think everyone cried, shouted and praised the Lord in their car, at home and even Wendy's. Derek is continueing his around the clock antibiotics. Shawn will return to work tomorrow so pray he can stay awake and I can keep the drugs straight!!! Derek is dry from one of his meds. and had bad diaper rash from others. He is being forced to use the potty chair since diapers keep him irritated. This is a huge event and it is all up to him. He still does not talk but does a good job of dragging the potty chair around room to room with him. Thank you all for your prayers and support. Most of all thank you Lord for Derek and clear test results!!! Wednesday, November 10, 2004 6:29 PM CST Home at last!!! Derek began chilling at 9:30 Sunday night and ended up fevering and vomiting. We went to Cabell and just made it home today. Derek has two different infections growing in his line. We are trying to save the line so he is home with around the clock iv antibiotics. We are picking up one of his drugs at Cabell daily because it can only live 24hours after it is made. We told them that was no problem since we would be getting to stay home instead of at the hospital. He will be on these drugs until the Sunday after Thanksgiving. Derek is starting to purk up. No fever today. He is starting into the other side effects of these meds. but the bottom line is we are treating the problem. Thank you for your prayers. Derek's illness can throw curve balls out of no where to us. We need all the prayers we can get to help us stay on top of the game. Saturday, November 6, 2004 3:38 PM CST Greetings from beautiful Ona, WV. Derek has had a good week. He discovered that he liked fried chicken. He has picked up a few words and is proud of himself. We are proud also!!! He did well with therapy this week and will begin again Monday. We also have to repeat his 4 hour urine collection test on Monday. This is our third time this round of testing. Help us pray this goes well. Derek is not potty trained so this test is painful for him. Dr. Kushner e-mailed us that the MIBG scans have arrived in NY. He said he would let us know the results soon. We will try to get Derek's new picture up for everyone to see. The old one deleted and the new would not appear. Take care and have a good weekend. We love you all and thank you for your prayers and support.
Monday, November 1, 2004 1:07 PM CST I am writing to let everyone know that we are still waiting for a final reading of Derek's test. NY has the final say but today Derek's scans arrived at our house. We are e-mailing NY to see if they have their own copy or if we need to send these. Shawn has returned to work and we are learning to adjust. Kayla does her home schooling every morning and we spend the rest of the day stimulating Derek. We have the birth to 3 program and they are teaching us how to work with him. Derek has delays due to all his events the past year. We are teaching him to eat a better balanced diet. We have been hiding apples and bananas in fruit loops to get his fruits in. We have been working with stickers and puzzles to help him focus and challenge his brain. While Shawn conducts our paper work from work and Kayla and I watch after the little Dude, Derek only thinks about being a two year old boy!!!! Today he took a purple crayon to our hall wall. He also ended up wondering around on the back porch. I worry about him with one side of my brain and admire him and his life with the other side. He is a great kid and we thank God for every day He gives us with Kayla and Derek. Thank you all for your continued prayers and support. We love you all. Shawn, Cheryl, Kayla and DEREK Tuesday, October 26, 2004 7:55 PM CDT Still not much to report on. The doctor said he was confident to say the spot on the CT scan was viral. Haven't heard from the MIBG scan. Derek is eating and playing very good these days. Sorry so short. I'll update when I have more info.
Monday, October 18, 2004 1:38 PM CDT Sorry so long since an update. We did do Derek's CT scan and urine collection last Tuesday. No results from the urine. The CT scan was clear except a spot around his intestines. They said it was nothing to worry about, some type of inflammation. We can't help but worry. This is what our lives consist of during testing. Please say a special prayer for his MIBG scan that it will be completely CLEAR!!!!! We leave tomorrow for Louisville, KY for his MIBG scan. Sunday, October 10, 2004 3:33 PM CDT We are HOME!!!!! After an eventful two weeks we have made it back to WV. They messed up Derek's testing schedule for the third time so we asked Dr. Kushner to start doing testing at home. He said that was fine that he just wanted copies of the scans and that he wants to continue doing bone marrows at MSKCC. That sounds like a good deal to me. His testing will still be this week but I will call in the morning to find out when they are. We don't go back to NY until Dec. 6. Thanks for the many prayers and please say a special prayer for his tests this week. Tuesday, October 5, 2004 3:37 PM CDT We finally got out of the hospital yesterday at 6 pm. Derek has to continue home IV antibiotics until Sunday. He is doing well. There are alot of details of the last few days but I'll spare you them. He has 3 more days of 3F8 treatments then we are off Saturday, Sunday and Monday. He will have a CT scan Tuesday and MIBG on Wednesday then HOME on Thursday!!!!! I'll try and update soon. Saturday, October 2, 2004 9:45 AM CDT Derek is still in the hospital. His blood cultures have been negative but they want to keep him until the morning to make sure he is OK. They said they couldn't get home health organized for tomorrow so it would be Monday before he left. It's been a long few days. We have been seperated because they won't let Kayla in the unit. We have to pass Derek off at the door. Cheryl stays during the day and I'm the night shift. Please pray the infection gets cleared up and Derek does well with his remaining treatments and scans and that we get out of here and get HOME!!!!! Thursday, September 30, 2004 4:11 PM CDT Derek was admitted to the hospital yesterday evening. It turns out that his fever was the result of a line infection. He is getting antibiotics every eight hours and is otherwise doing good. They are continuing his 3F8 antibody. He will be inpatient a few more days to adjust the right dose of antibiotics then he should get out and will continue outpatient. Tuesday, September 28, 2004 5:11 PM CDT We arrived in NY at 8:35 PM Sunday night. Derek started his treatment yesterday. It was a long day, 8 am until 4 pm. Everything was delayed. He had extra hives, required oxygen and an extra dose of pain meds. Today he had a reaction to his IV GM-CSF. He spiked a fever and broke out in hives and welps. After discussion between NPs and Dr. Kushner they decided to proceed with the 3F8. They went ahead and drew blood cultures to make sure the fever wasn't from a line infection and started an antibiotic to make sure. They will be watching his blood cultures and give him extra meds prior to his IV GM-CSF tomorrow. Sunday, September 26, 2004 9:07 AM CDT We leave today for NY. I will try to update tomorrow or Tuesday. Please pray for a safe flight, a good treatment and clear scan results!!!!! Tuesday, September 21, 2004 9:21 AM CDT Sorry no update in awhile. We've been busy. Derek is doing well. Derek's immune function test shown that his immune system is still low so he has to continue Pentamidine and no immunization shots yet. We will leave for NY on Sunday to start treatment on Monday. He has his CT scan on 10/12 and MIBG scan on 10/13. Please pray for his treatment and that his scans will be clear!!!!!
Monday, September 13, 2004 8:55 AM CDT We had our meeting with the Birth to Three people on Friday. Derek will be receiving speech therapy once a week and nutritional therapy every other week. We are still waiting on results of his immune system test. It should be back in a day or two. Not much else to tell. Everything seems to be going good here in WV. Thursday, September 9, 2004 7:58 AM CDT Not much to update on. Derek is doing good. He even seems to be eating better. Tomorrow we have our visit with Speech and Nutrition. Hopefully tomorrow we will hear from NY on Derek's immune test. Monday, September 6, 2004 7:46 AM CDT Good morning from WV!!!!! We landed at 10:30 Friday night instead of 9:20. The plane was delayed from Philadelphia to Charleston. Derek is glad to be back home. He is playing with all his toys and eating fairly well. He drank 4-5 cups of tea on Saturday. We can't get it in NY so he makes up when we get home. We have our meeting Friday with the WV Birth to Three people. We should get him started with Nutrition and Speech therapy.
Monday, September 6, 2004 7:46 AM CDT Good morning from WV!!!!! We landed at 10:30 Friday night enstead of 9:20. The plane was delayed from Philadelphia to Charleston. Derek is glad to be back home. He is playing with all his toys and eating fairly well. He drank 4-5 cups of tea on Saturday. We can't get it in NY so he makes up when we get home. We have our meeting Friday with the WV Birth to Three people. We should get him started with Nutrition and Speech therapy. Friday, September 3, 2004 10:34 AM CDT Derek is finished with his treatment. He is in the room asleep. The room is cleaned and our bags are packed. We are ready to go home. This was supposed to be a short trip but it has felt like forever and a day. We land in WV at 9:20. Pray for a safe trip. Monday, August 30, 2004 11:15 AM CDT Sorry for not updating for so long. The computer room has been closed every time I come down. I guess I'll have to start lugging our computer up here. Derek did well with the remainder of last weeks treatments. We stayed near the RM House this weekend. The convention is getting cranked up and so is the crowd. His treatment this morning was a little rough but not as bad as last Monday's. I'll try to update soon. Wednesday, August 25, 2004 5:29 PM CDT Three treatments down and seven to go. Monday wasn't easy on Derek. He had to have oxygen and extra pain meds. He has done OK the last two days. Nothing too exciting going on here and we hope it stays that way! Keep up the prayers!!!!! Saturday, August 21, 2004 8:45 PM CDT Tomorrow we leave for New York. Nothing new or exciting has been going on. Derek's blood work yesterday looked good. He will start his antibody treatment on Monday. Please pray for Derek's treatments and a safe trip. Tuesday, August 17, 2004 9:59 PM CDT We went for blood work yesterday and it looks great. Derek starts his GMCSF shots tomorrow. He is doing good. We leave Sunday morning and he starts treatments on Monday. Not alot else going on. We are just going to enjoy the rest of the week here at home. Friday, August 13, 2004 7:39 AM CDT I'm just a day late. Not too bad. Things are well here in Ona, WV. Kayla is getting ready for a big day on the town with Aunt Tammy and Gran. Derek will have a day of peace and quiet. Derek is doing good and seems to be eating a little better. Speech therapy came yesterday to evaluate BUB. She said he is off the "right channel". When he was supposed to be invading the world, the world invaded him. She said from all his babbling, jargen and few words he says he is able to verbally communicate. We just have to get him back on the "right channel". It should be a calm weekend. Monday, August 9, 2004 8:56 PM CDT Once again another Thursday has slipped by me. Derek finished his 2nd round of Accutane last night. I talked to Dr. Kushner's secretary today and he said we will start Derek's 3rd round of 3F8 Antibodies on the 23rd. Derek seems to be doing pretty well. He isn't eating very good though. We found a WV state funded program called Birth to 3. They are going to help us with Derek's nutrition and provide a speech therapist to get him jump started. His vocabulary now is DADA, Mom, jump, bye and no. He was talking more than this at 15 months old. Monday, August 2, 2004 8:28 AM CDT Sorry I forgot to update on Thursday. We are now getting Derek's preventitive pneumonia meds at CHH. He has been doing well the last week. He finished his antibiotic on Thursday and seems to be wanting to eat more now. Still no word on when we are going back to NY. Either the 15th or 22nd. We just got his blood work back. His platelets are 220 and his hemoglobin (blood) is 11.2!!!!!!!!!!!!!!!! If I'm thinking right that is the best it has been since a year ago. His white cells are 2.94, not great but pretty good. Thursday was a year since Derek went to the hospital and started this whole ordeal. Looking back there were alot of worries, doubts and confusion (some still remain) but also looking back God has truly blessed and answered many, many prayers. Please continue the many prayers for Derek. Thank you and may God bless!!!!! Monday, July 26, 2004 9:48 AM CDT Derek is doing well. He started his second round of Accutane this morning. Thru Thursday he will take Accutane twice a day, antibiotic four times a day, Singular once a day and Zyrtec once a day. After Thursday he will drop the antibiotic if the C-Diff is cleared up. He isn't eating to well. His antibiotic causes a metal taste in his mouth. Pray that Thursday is the last day. All is doing pretty well. No doctor visits until next Monday. Thursday, July 22, 2004 8:42 PM CDT Derek is doing well. We went for counts yesterday and his platelets were 137! Last Wednesday they were 13. He has played with every toy he has in the house and garage. I think he happy to be home where no one pokes, prods or draws blood from him every five minutes. Hopefully we are home until August 15th. Monday, July 19, 2004 7:00 PM CDT We're HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Monday, July 12, 2004 5:27 PM CDT Sorry it's been a week. We arrived in NY at 10 am Wednesday. Derek's CT scan from Thursday is clear and we are still waiting for MIBG scan results. Derek's platelets have been dropping each day. They were 13 on Friday and he got a transfusion. They were 4 this morning!! We are holding off on antibody treatment until we know what is going on. As of now the docs say Derek's body has developed an antibody that is attacking his platelets. He has bone marrow aspirates at noon tomorrow and we see a Hemotologist (sp?) on Wednesday at 9:30 am. Dr. Kushner assured me it has nothing to do with NB. Please pray hard for Derek. As Cheryl has said many times "you don't just deal with cancer it's alot more stuff that pops up". Tuesday, July 6, 2004 7:24 AM CDT This is our last day in WV. We leave tomorrow morning at 7 am and return the 23rd at 10 pm. Everytime we go up the hill at Yeager Airport I say "I can't wait until we're going back down this hill!". Talk about wishing your life away. Wednesday, June 30, 2004 8:42 PM CDT Dr. Kushner called yesterday and said "his bone marrow looks good, I'm pleased". Thank and Praise GOD!!!!! Derek continues to eat and play well. We went in today for blood work and pneumonia meds. Not much else going on. Saturday, June 26, 2004 8:49 AM CDT Sorry it has been a week since our last update. We got home Tuesday at 1 pm. We have been doing the normal getting back after 2 1/2 weeks stuff that has to take place. We have to fly out July 7 so we will just be home for 2 weeks. I told Mom people take 2 week vacations but we come home for two weeks. Derek's CT scan is Thursday the 8th and MIBG scan is Friday. Dr. Kushner said no Bone scan so sorry I put that in the last journal. We are still waiting for bone marrow results which we pray are still clear. Saturday, June 19, 2004 1:19 PM CDT The 2nd cycle of antibodies is over!!!!! We are still in New York until Tuesday morning. We go in Monday at 9:30 for Derek's bone marrow test which is at 11:30. Plese pray for his Accutane pill. We can extract the gel out of the pill to give him but you can't always get it all. Pray long and hard that he will chew or swallow it. This will be a miracle but since last July we have experienced a few. Also pray that his bone marrow remains clear!!!!! Our plane leaves LaGuardia at 9:40 am and we land in Charleston at 1 pm. We will only be home 2 weeks this time because we have to redo his CT, MIBG and Bone scans before his next antibody treatment. It's hard to believe it has been 3 months since his last scans. Monday, June 14, 2004 6:43 PM CDT Derek continues to do well. He has had a spell the last few days and shows himself. Treatment went well today. We had a kicked back weekend. Derek starts his Accutane on Monday and has bone marrow aspirates. We leave Tuesday morning!!!!! Just one week left then it's home to WV!!!!! GranPa says we have cucumbers waiting in the garden! It will be GREAT to be back HOME!!!!! Continue to pray for Derek each time you think of him.
Thursday, June 10, 2004 12:40 PM Four down, six to go! Derek has done fairly well the last two days. We have got him pain meds right at the flush of his antibody and this seems to work to control his pain. He fell asleep in the stroller on the way back to the Ronald McDonald House and Cheryl just got him out and put him in the bed. Kayla is watching Tom and Jerry.
Monday, June 7, 2004 10:52 PM EDT We arrived in New York last night at around 8:45. We got to the Ronald McDonald House at about 9:45. We threw our stuff in, Lyscoled the place and hit the bed. Monday, May 31, 2004 7:42 PM CDT Derek has done pretty well this past week. He has had energy to play and has ate pretty good. We have one more week at home until we head back to New York. He has a check-up on Wednesday then we leave for NY on Sunday. We fly out of Charleston at 4 PM. Monday, May 24, 2004 8:36 AM CDT I hope everyone had a wonderful weekend. Derek was crabby and clingy most of the weekend. So far this morning he has been a little better. Me and Kayla got to go back to church yesterday which was great. Thursday, May 20, 2004 8:13 AM CDT DAY 97 POST TRANSPLANT Monday, May 17, 2004 2:19 PM CDT We are HOME in WV!!!!! We got home Saturday evening and there is still laundry to do. Derek is doing well. He broke out in a little bit of hives yesterday. We should go to CHH on Wednesday for blood work, hearing test and an injection. Saturday, May 8, 2004 6:32 PM CDT It's Uncle Mike again. Shawn & Cheryl wanted me to update you on Derek's progress while they are in New York. Thursday, April 29, 2004 12:15 AM CDT Sorry it's been a week since an update!! Derek is doing well. NY called Monday and said treatment will begin Monday May 3. We went to Dr. Nicholas for Derek's two year check-up. He is 26 lbs. and 35 inches. Not alot going on in the way of Derek. He is just playing and enjoying being home for a little while. We will fly out Sunday and will be in NY two weeks returning May 15. As for his front bone marrow and MIBG scan the guy that called Monday didn't have the results. He said if we didn't hear back from him consider them clear. No word so they must be clear!!!!! Pray that we have a safe trip and Derek tolerates the antibody treatment well. Friday, April 23, 2004 8:55 AM CDT Home Again!!!!!
Sunday, April 18, 2004 7:54 AM CDT WE ARE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Tuesday, April 13, 2004 8:16 PM CDT This is Uncle Mike reporting that Shawn, Cheryl, Kalya and Derek made it to New York today and seen Dr. Kushner. He just wanted to go over things with them. They are staying in the Ronald McDonald house and are scheduled to start testing tomorrow. Saturday, April 10, 2004 9:16 AM CDT Where to begin? I guess I'll say we are headed for New York Monday as soon as Dr. Driscoll is done with us. We spoke with Dr. Kreisman and it was clear what needed to be done. Thanks for the prayers. They definately worked. She told us what we thought. The study is randomized so Derek might get the antibody or may not. This is decided by a computer. We feel more comfortable with Dr. Kushner making this decision. He saw 80 NB kids last year and has been doing this antibody since 1986. He is world renowned for being "the" NB doctor. You ask why we didn't go to see him before? Derek's protocol is nationwide so no matter where we were he would get the same treatment. Now that he just has his Accutane to take it is time to get Dr. Kushner's expertise to see if further treatment would be beneficial. Tuesday, April 6, 2004 2:21 PM CDT Sorry no update in so long. Things have been a little crazy around here. We have been waiting on New York to call but still haven't heard from them. The reason being Dr. Kushner wants us to be informed of the antibody study that is part of Derek's protocol in which we just learned about. So we will meet the doctor on Thursday to find out more about it. The only problem I have read about so far (I just found out about this literally 30 minutes ago) is it is randomized meaning some kids get the antibody and some don't. This doesn't make sense to me. Thursday, April 1, 2004 5:57 PM CST Sorry no updates but I was holding out until I talked to New York. Dr. Kushner is going to get Derek's info from Dr. Driscoll. Sunday, March 28, 2004 9:13 AM CST Everything is going well here in Durham. Bub has now completed one week of radiation. We have gave him Zofran each morning before his radiation and he has done good. We didn't think he would need it this weekend but soon learned to continue it on the weekends. He had two up-chucks yesterday (in the truck of course). There's not much going on. Hopefully our calm weekend continues. Thursday, March 25, 2004 10:28 AM CST We went for radiation and a clinic check-up today. He did well in radiation. He didn't fight the mask and went right to sleep. He has been waking up a little calmer and hope he continues to do better. Dr. Driscoll said Derek and his blood work look great. Tuesday, March 23, 2004 9:07 AM CST Derek is doing well after his second day of radiation. He wakes up a little wild and upset. The doc said he would calm down from that after a few more days. He is only asleep about 10 minutes which is good. I take him into the treatment room and hold him until he is asleep. Sunday, March 21, 2004 12:01 AM CST I took Derek back to clinic this morning. He woke up with blood on him and the bed. Not alot but freaked us out. They changed his dressing, gave him platelets and decided he was getting too much Heparin. His bleeding time test was a little off. This was supposed to be an off day but instead we were there for 4 hours. Friday, March 19, 2004 9:30 AM CST We went to clinic yesterday and they put us in a room. The nurses came in with masks and gowns on saying he was on isolation and he was growing something. We finally had to call a time out and figure out what was going on. This was the first we heard of any of this and before they proceeded we wanted to know something. Lauren, the NP, came in and apologized. She was supposed to be informed when we showed up. She explained Derek was growing an Adnovirus from his viral test two weeks ago. Adnovirus is basically a chest cold to you or I but to an immunosuppressed Derek fresh out of transplant it can be serious. Lauren and Dr. Driscoll both explained since it took two weeks to grow and he has no symptoms it should be alright. We will all pray that it doesn't spread and his immune system builds up to cause it to go dormant. It is like any other virus. It doesn't go away it just lays dormant in your body. Wednesday, March 17, 2004 6:17 PM CST Derek's line replacement surgery started at 9:40 this morning and Dr. Rice came out to tell us he was done and Derek did great at 10:15. He was back in his room at 10:30. They came to his room to do an x-ray to make sure the line was sitting right inside. We left the hospital at 1:30. He has been doing pretty good since we've been home. They gave him pain meds of which the first dose came right back out. He was sitting and fell over playing and cried out grabbing his chest so we figured it was time to try the pain meds again. Thankfully this time it stayed down. We go back tomorrow for a clinic visit with Dr. Driscoll. Hopefully the weekend will be calm. Tuesday, March 16, 2004 8:10 PM CST This is Uncle Mike requesting a special prayer for Derek. Monday, March 15, 2004 12:39 AM CST DAY 31 Friday, March 12, 2004 3:42 PM CST DAY 28
Tuesday, March 9, 2004 10:33 AM CST DAY 25 Sunday, March 7, 2004 8:05 PM est DAY 23
Friday, March 5, 2004 7:54 PM CST DAY 21 Thursday, March 4, 2004 11:20 AM CST DAY 20 Tuesday, March 2, 2004 7:25 PM CST DAY 18 Monday, March 1, 2004 12:27 AM CST DAY 17 Sunday, February 29, 2004 6:35 PM CST DAY 16 Saturday, February 28, 2004 7:50 AM CST DAY 15 Thursday, February 26, 2004 3:35 PM CST DAY 13 Tuesday, February 24, 2004 1:07 PM CST DAY 11 Sunday, February 22, 2004 12:37 AM CST DAY 9 Saturday, February 21, 2004 8:53 AM CST DAY 8 Thursday, February 19, 2004 4:00 PM CST DAY 6 Wednesday, February 18, 2004 6:02 PM CST DAY 5 Tuesday, February 17, 2004 5:52 PM CST DAY 4 Monday, February 16, 2004 5:57 PM CST DAY 3 Sunday, February 15, 2004 7:55 PM CST DAY 2 Saturday, February 14, 2004 6:19 PM CST DAY 1 Friday, February 13, 2004 4:14 PM CST DAY 0 !!!!!!!!!!!!!!!!!!!!!!!! Thursday, February 12, 2004 5:19 PM CST DAY -1 Wednesday, February 11, 2004 6:07 PM CST DAY -2
Tuesday, February 10, 2004 6:45 pm Day -3 Monday, February 9, 2004 12:46 AM CST Day -4 Saturday, February 7, 2004 12:29 AM CST Day -6 Thursday, February 5, 2004 12:47 AM CST Sorry no update but after Monday's journal things got crazy. I took Derek to the unit at 10 o'clock Monday night with a 102.2 temperature. There are alot of medical details but I won't get into it. Basically they were going to put off transplant for a couple weeks. Now they are pretty sure Tuesday's blood culture (shows infection) was contaminated. Nothing grew from Monday's or yesterday's. So the plan is to go in at 4 pm (2 hours) to be admitted to the transplant unit. Lots to do so I'll update soon. Maybe. Monday, February 2, 2004 9:10 AM CST Derek is still running around like a wild man. Not much going on here. Just hanging out waiting. We go in tomorrow morning for blood work and as far as I know he goes in Wednesday for transplant. This is how it all goes:
Friday, January 30, 2004 8:10 PM CST We are now nestled into our new home. That's not to say everything is put up but we are getting there. It is very nice and clean. We have went thru and cleaned and Lyscoled everything so I don't think there are any germs left. Curt and Donna (Cheryl's mom and dad) are coming this weekend to visit and take the camper back. Bubby is still feeling really good. He has been running all over the place so much we have had to shut some doors to contain him. Pray that he continues doing well this weekend. The plan is still to go in Wednesday. Wednesday, January 28, 2004 8:42 PM CST Where to begin??????? I guess first and foremost would be the MIBG scan results which were CLEAR!!!!!!!!!!!!!!! Friday, January 23, 2004 3:50 PM CST Sorry no update but I have had problems getting an Internet connection. We arrived Monday and are doing well. We have been at the hospital everyday for tests but get the weekend off. He has his MIBG scan on Wednesday so pray it is clear. He will go into the transplant unit on Thursday and start pre-transplant chemo on Friday. Dr. Driscoll said he would be inpatient 4-6 weeks and be here outpatient for 30 days. I'll try and update soon. Sunday, January 18, 2004 10:03 AM CST This will be the last journal until we are in beautiful downtown Durham, NC. Derek is still doing great. He continues to put on weight and trash the house every chance he gets. We will be there about 10 days before he is admitted into the hospital, so Mom and Kayla are going down with us. We have been packing the camper the last 2 or 3 days and there is still a pile of stuff in the kitchen to go out. I told Cheryl it would be easier to hook up to the house and pull it down. Pray for a safe journey but most of all that BUB will tolerate the next few months as well as possible.
Thursday, January 15, 2004 11:45 AM CST The plans have changed since yesterdays journal. Hopefully not many have read it because as usual in less than 24 hours we have a completely different set of plans. We are now leaving on Monday to begin testing on Tuesday. This continues til the following Wednesday, the 28th, in which he will be admitted that afternoon or the next day, the 29th, to begin his transplant. Sorry about the confusion. Wednesday, January 14, 2004 8:08 PM CST Derek continues to do outstanding. We went yesterday for a check-up and he received blood. All his test have come back good. His hearing test showed a difference between this one and the last but Dr. K said his chemo has caused minimal high frequency hearing loss in most the kids. I gathered it wasn't much to worry about, at least not at this time. We leave Sunday to be at Duke Monday to begin tests, blood work, physical and ETC. We will be doing this the first week we are there. Some where around the 25th -- 28th he will be admitted to begin pre-transplant chemo. Not much else to tell right now. We are just getting everything in line to be gone awhile. Sunday, January 11, 2004 8:03 PM CST Derek continues to do well. He is eating and just acting normal. Hopefully tomorrow we will talk to Duke and find out definite plans on when we will be there. We will update when we know for sure plans. Please continue to pray!!! Thursday, January 8, 2004 9:09 PM CST We went in for Derek's scans/tests yesterday and everything went really smooth. He was asleep a little over 3 hours. His bone scan and CT scan were both CLEAR!!!!!!!!!!!!!!!!!!! Not even a spot on the liver. His urine and bone marrow will be sent to California to be tested. Dr. K looked at his bone marrow and said it looked good but official results will come from California. His sinuses showed some inflamation so he is on an antibiotic to make sure it isn't an infection going into transplant. We are supposed to go to Duke the 19th but haven't heard definite dates from Duke. As you can see your prayers are working so keep them up through his transplant so he will do as well through it as through his chemo. Monday, January 5, 2004 7:38 PM CST Sorry so long since an update. Derek has been doing very well and is eating everything in sight. He has been feeling pretty well and has been running all over the house playing. We took him out in the garage to play this weekend and also for a wagon ride which he really enjoyed. I have to call tomorrow to find out the final plans of his tests. Right now we go in Wednesday at 8 in the morning to begin and possibly staying overnight and finish on Thursday. They were going to try to schedule everything on Wednesday if possible but we will find out for sure tomorrow. Please pray that everything goes well and that the test come back normal.
Thursday, January 1, 2004 6:22 PM CST Here it is 2004! Unbelievable!!! Life hasn't always been laid out or happened in the way I had invisioned but none the less I can't complain because the good times have far out weighed the bad. God has truly blessed me and my family not to say I haven't questioned and asked why about certain situations in life but I'm only human and God understands. Tuesday, December 30, 2003 7:13 PM CST We went today for Bub's check-up and he needs platelets and blood. We had been there for 2 hours when we found this out and the outpatient room was full as well as the Peds floor. So Dr. K said to come back tomorrow morning for his "goods" and that she would order it and have it ready. His white cells were .3 so we will be back Friday as well to recheck them. Dr. K told us everyone at Duke was out until the new year so no dates for transplant. She said all his tests will be done around Jan. 10 - Jan. 15. Derek's new snack of choice-Frosted Flakes. He also had a few bites of pizza this evening and of course had some Cheetos today. He still isn't drinking much and he is fussy and wants to sit on us (mostly his Mom) alot. You can definitely tell he has had 6 rounds of chemo because he is taking longer to bounce back. As I type Kayla is on her bean bag and Bub is on the couch watching Little People both completely zoned in. We changed Bub's baby bed into a toddler bed for Kayla so she is now back in her room. We of course have to alternate sleeping in the bed across the room because she is still scared to be in there by herself. Please say a special prayer for Alexis Chapman. When we were leaving CHH they were taking her to PICU for respiritory complications Saturday, December 27, 2003 9:05 PM CST We went in for a check-up yesterday and Derek received a blood transfusion. His white cells were .4 but the rest of his blood work looked O.K. I think the blood has helped because he hasn't been as fussy today. He did have a pretty good up-chuck today but was contained by his blanket and shirt so clean up was quick and painless. We will go back Tuesday (hopefully not before) for more blood work and a check up. Dr. K said we will probably be in the first full week of January for all his test which should be for two days and a night. The third or fourth week of January we should be heading for Duke. This is all guesstimates so plans could change.
Wednesday, December 24, 2003 1:38 PM CST Derek has been doing very good since we've been home. He was a little grouchy yesterday but that's alright. So far (cross your fingers) no up-chucks. That's for Derek anyway. Kayla on the other hand trashed her seat in the truck just this morning. We had just pulled into the subdivision and she erupted. I immediately rolled the windows down because I could invision Derek joining in on the excitement and them vomiting in unison. So guess what I got to do. You guessed it, Clean Up Vomit. Granted as a parent you have to clean some up, but in the last few months I have cleaned up a lifetimes worth. Sorry to be so gross but welcome to our life!! You read the journals for updates so good or bad I'll give them to you. We go back Friday for a check-up so pray Derek does good and he avoids infection so that won't delay him from the final steps in his treatment process. MERRY CHRISTMAS!!!!!!!!! Monday, December 22, 2003 7:29 AM CST Derek has been doing pretty good this round of chemo. We should get out of here at noon and back Friday for blood work/check-up. He has only had a few drinks of Sprite but has been snacking really well. Kayla has been sick at mom's (Goldie) house since last Wednesday so we will leave here and go pick her up. Pray that Derek continues to do well and avoids any infections. Friday, December 19, 2003 8:27 PM CST We got to CHH at a little past 9 this morning. We had to wait on a room but started his chemo at 1:30. I removed his steri strips off of his surgery site at it looks really good. The sticky had turned gooey and it had dried blood on the strips but he sat there watching the Wiggles and didn't flinch. I've come to the conclusion he is tougher than woodpecker lips. Yes woodpecker lips!! (think about it) We will be in til Monday afternoon then home til the first of the year then start redoing his scans/tests. His last journal I left out he will also have an eye and dental exam. Pray that he does well thru this last round of chemo.
Wednesday, December 17, 2003 8:03 PM CST Derek continues to do well. We go in for round #6 of chemo on Friday morning. The first and/or second week of January he will repeat all his scans/tests from his hearing test to his bone marrow. Mid to late January we will go to Duke for a MIBG scan, pre-transplant chemo, stem cell transplant, radiation and check-ups in that order. Then we will return home to start an acid therapy that will last 6 months. It consists of a liquid capsule that we will have to squeeze out onto his food. He will be on it 2 weeks then off 2 weeks for the 6 months. After talking with Dr. K yesterday we feel pretty good about Derek. She said she was confident all Derek's tests will come back normal. The reason she says this is the pathology report showed 1/3 of his tumor was viable (has NB cells present) combined with his normal creatine urine test she said showed that the tumor should be the only place in his body where NB cells are present. I hope you can understand this all. Our schedule and explanations of Bub's progress is a bit confusing and overwhelming but it all looks like God is answering prayers and deserves praise!!!! Please continue to pray for Bubby, he obviously has alot ahead of him. Monday, December 15, 2003 6:01 PM CST We arrived home at 4:30. Derek went to sleep as soon as he got in the truck. So while he was asleep and comfortable we made tracks. He woke up at Wytheville, VA so we stopped for gas and a bite to eat. He watched his movies the rest of the way home without a peep out of him. He is actually doing too good because he thinks he can climb and rowdy as usual. We go back to CHH tomorrow at 9 for a check-up so we will find out when chemo will be. Probably Dec. 26. MERRY CHRISTMAS!! I'll try and update tomorrow with details of the upcoming month(s). Sunday, December 14, 2003 4:20 PM CST Derek was released from the hospital at 11 this morning. He fell asleep as soon as we got into the truck. He has been eating and playing. We got the pathology report back and 1/3 of the tumor had NB cells in it. It is good the entire tumor was taken out. If Derek continues to do well we will head home tomorrow. Saturday, December 13, 2003 11:46 AM CST Just wanted to let everyone know Derek is doing good. He hasn't had a temp for the past 24 hours, he has ate a few bites of banana, mashed potatoes, sweet tea, has had bowel sounds and passing gas. How's that for details!!! But seriously, that's what we need for him to start getting better. He did up-chuck yesterday so Dr. Rice said he needed Bub to eat and keep it down to make sure he didn't have any blockages. Hopefully he will keep his lunch down and we will get out of here this evening or tomorrow. Unfortunately Kayla had to go back home with Mom, Tammy and Gran-Ma. She didn't feel well last night and had a temp of 101.5 this morning. So we figured better safe than sorry and sent her back to WV. Thanks for checking in on Bubby. Thursday, December 11, 2003 1:50 PM CST Sorry no journal for a while but we've been a little busy. We had a good trip coming down to Duke. We met with Dr. Rice on Tuesday and he felt he could remove the tumor but wouldn't know details until he got in there and looked for himself. The surgery took 3 hours on Wednesday and he was able to remove the entire tumor!!!!! He said the lymph nodes and everything else looked good. They will send it to pathology to disect. They will do test to tell if there are any NB cells present. All I can say is Praise God because he has definitely been answering prayer!!! We still have a while to go so continue praying. Derek went into PICU after surgery and came out to a private room this morning at 9:30. He has been doing really well. His vitals have been good and they have kept him on Morphine every hour or two. That has helped his pain and kept him half sedated. All his doctors are pleased with how the surgery went. We don't know how long we will be in the hospital. We will probably stay several days after the hospital to let him kick back before the long ride home. Friday, December 5, 2003 8:36 PM CST We went yesterday to CHH and Bub received blood. We are now slowly packing to head out Monday. Derek is doing, eating and drinking pretty good. There is not alot to tell. We are just hanging out until it's time to go. Wednesday, December 3, 2003 8:41 PM CST Today has been a calm day. We will be going for blood in the morning. He has to have it at a certain level before surgery. We will be leaving Monday for Duke. We will meet the surgeon on Tuesday and have surgery Wednesday. Derek will spend his first night in PICU and take each day one at a time after that. We want to say thank you to everyone who has been feeding us and to our church family for their support. Most of all thanks again to everyone that prays for our little man. Monday, December 1, 2003 6:38 PM CST Derek is doing really well. He is back to eating and drinking. We still haven't heard from Duke about a surgery date. We go tomorrow morning for blood work so hopefully we will find out something tomorrow. We weren't going to put up a Christmas tree because we didn't know where we would be but Kayla kept asking about lights and a tree so we gave in and put up the Christmas tree. The kids really like it so I'm glad we put it up even if we won't see it much. It will probably still be up come Easter since we will be at Duke after the first of the year til who knows when. I started packing the camper today because I'm pretty sure we will get a call saying "we need you here at 8 in the morning". Thank you in advance for your continued prayers for Derek. Tuesday, November 25, 2003 5:39 PM CST Still no surgery date. We go back for a check up Tuesday. Hopefully nothing happens and we have a nice holiday weekend. Derek is improving. He is eating and drinking really well now. I probably won't update til the weekend so we pray that everyone has a great Thanksgiving and stop and thank God for all our many blessings! Sunday, November 23, 2003 8:19 PM CST Not alot to tell. Derek has started drinking and eating a little better. We went for blood work this morning and it was good. We should know by Tuesday what his surgery date will be. We took him out for a walk today. Instead of sitting in the wagon, Kayla drove him in her truck. After that he played out in the garage a little bit. I'll let everyone know when we find out the surgery date. Friday, November 21, 2003 8:16 PM CST We went in today for a check-up and CT scan. The scan was to look at prior to surgery. Dr. K said she liked what she saw in the CT pictures. The tumor has shrank a little more since his last CT scan which was after his 3rd round of chemo. She said a spot on the liver showed up but couldn't tell if it was still tumor or scar tissue. Also the tumor didn't look like it involved any main blood vessels but they won't know until surgery. With that said they are sending us to Duke for his surgery. The reason being there are more pediatric surgeons there in case they run into something like a main blood vessel being involved. This has nothing to do with Dr. Beaver's ability to do Derek's surgery only that she is the only pediatric surgeon at CHH so if they run into something it's better to have 4-6 hands verses 2. Dr. Beaver has been a wonderful surgeon and we appreciate everything she has done to help Derek. So it looks like we will go to Duke the 1st week in December. We should be there possibly 1 1/2 weeks. It all depends on how he does during and after surgery. We ask you to pray for the family and the Duke surgeons so they can get all of the tumor out. Also a special THANK YOU to Jamie Bailey and his church for the benefit sing for Derek. May God Bless!!!
Tuesday, November 18, 2003 8:03 PM CST It's good to be home other than cleaning up vomit. He did last night and again this evening. He has been running around acting like he feels fine otherwise. He has been drinking a little but not eating very well. Derek has been eating a few powdered doughnuts. As I said before he has to crush them up before he eats them. He now thinks he is Cookie Monster. If you can visualize Cookie Monster inhaling cookies with the crumbs flying everywhere this is just what Derek looks like eating powdered doughnuts and Cheez-its crackers. I guess he's not much in the mood to eat so he just assumes to play with the food and act like Cookie Monster. We go back Friday for a check-up and should know an approximate surgery date according to his blood work. The good news is Derek's hearing test came back normal. This past round of chemo is the one that damages his hearing so hopefully and prayerfully if the first one didn't hurt his hearing then this one won't either. Please continue to pray for Derek and his upcoming surgery!!! Sunday, November 16, 2003 9:50 PM CST It's been a long weekend and we are ready to go home. We should be out of here tomorrow night. Derek has been doing fair. He has up chucked once a day since he started his chemo. You can tell the chemo is catching up with him. He sleeps longer and doesn't feel quite as well. Although he has had some wild moments of the evening. Last night he didn't lay down to go to sleep until midnight. I think it had something to do with drinking Mountain Dew. Tonight Cheryl would count 1,2,3 and Bub would run across his bed as fast as he could. He hasn't ate much and isn't drinking but a few ounces a day. His blood work looks good except his white cells which have already dropped to 2.8. So hopefully we should be out tomorrow and come back Friday for a check-up. Friday, November 14, 2003 9:28 PM CST Well it's already been an interesting weekend and it hasn't even begun. First, he was supposed to be done with his urine collection at 4 this morning but it got messed up so it was extended til noon today. Therefore putting off his chemo til a little after noon. The good news is he got his catheter out and doesn't have to have it all weekend. Then they came in this evening about 9 and said we would have to move rooms. Another patient was coming and needed our room so here at 10:30 we just got settled into our new room. Derek has been doing really well except an up-chuck after dinner. He did as he always does, he acts fine, up-chucks and goes about his business and I get to clean it up. We should be out of here about 10 o'clock Monday night. We'll keep everyone updated thru out the weekend. Wednesday, November 12, 2003 10:55 AM CST Derek has been doing really well this last week. He has been eating like a horse. He has also been running around the house playing until he can't run no more then it's nap/bed time. He has only been taking one nap a day, which is in the morning and Kayla takes one about 1 or 2. I think they plan it out so me and Cheryl don't get one. Derek has been pacie free (except bedtime) for about a week and is jabbering and talking alot more. I think he has been able to talk for a while because what he says is really clear. I guess he didn't want to or have to. All he had to do was point at something and we would get it. He is a classic second child and became worse with his illness. His new choices of food are Cheez-its, powdered doughnuts, bananas, suckers and yogurt. He takes a powdered doughnut at a time, breaks it into bite size pieces in the floor and then eats it. You can imagine the mess. Cheryl has a cow and I just laugh. Then of course there are his Cheez-its. I give him a small bowl of them then when he decides he is done with them he dumps the rest in the floor and steps on them. I guess we'll head to CHH tomorrow afternoon for his urine collection. Then when that's done he will start his 5th round of chemo, probably Friday morning. We should be done and out by Monday afternoon. He will probably be ready for surgery around Thanksgiving so they figure surgery will be the first part of December. Friday, November 7, 2003 3:05 PM CST We went in for a check up this morning. All his blood work looked good except his platelets. His were 33 and the normal range is 150-450. Dr P said with everything else looking good he expected his platelets to climb on their own. His white cells are 4.6 the normal is 5.5-15.5. He goes back in CHH Thursday afternoon for a 12 hour urine collection then starts chemo Friday morning. With his counts being up we should be home until Thursday. If we can do it I think it will be our longest stay at home in I don't know when. Keep up the prayers! Wednesday, November 5, 2003 7:38 PM CST We got released from the hospital about 3 o'clock. Nothing grew (infection from blood cultures) after 48 hours so they let us go. He had 48 hours of antibiotics, 2 blood transfusions and platelets. We go back Friday for blood work and probably more platelets. Dr. P said the chemo is taking a cumulative affect on Derek so his body is slower to bounce back from chemo. His white cells are still just .4 so he still doesn't fell the best. He would just assume lay around on Cheryl or I. Hopefully by the weekend he will feel a little bit better and be more playful. Don't get me wrong, he is still doing better than anyone could imagine. He has the nurses trained to stay out of his view of the tv screen. They come in to work on him or his pumps and they get into weird positions just to stay out of his way. He also knows to take his temp, push his saline in his line, put on/take off his blood pressure cuff and numerous other medical stuff. They say he's going to be a doctor. There's not alot else to tell so I'll get off here and start trying to get the kids into bed. Monday, November 3, 2003 5:42 PM CST Well believe it or not we are back in the hospital. Derek started a little fever last night about 8 or 9. It never reached 101 but lingered around 100. I called this morning and Dr. P said to bring him in for blood work and cultures. While there he decided to admit him for antibiotics. He also needed blood and platelets. He finished his blood transfusion a little bit ago and has already perked back up. We will be here a least 48 hours. Saturday, November 1, 2003 6:12 PM CST So far Derek is doing well. Unfortunately his due date for getting a fever/infection is tommorrow. I pray we can avoid an infection this round. We went in Friday for a check-up and his counts looked good (for just getting chemo). His next scheduled check-up is Tuesday morning. The last 7-10 days he has been crying and grabbing his right side (tumor side). This lasts only 2-3 seconds then he goes about his business. Thankfully Dr. K said it was just scar tissue and common in abdominal surgery such as Derek's. Most of you know the up coming events but for you that don't know here it is. November 13 P.M. he goes in for a 12 hour urine collection. Then November 14 A.M. he starts round #5 of chemo. Once his counts rebound he will have his surgery to remove the tumor. December 7 he goes in for round #6 of chemo. Once he rebounds we will go to Duke for his stem cell transplant. After transplant he will have radiation to the abdominal area and have frequent check-ups which will all be at Duke. We could be there up to 12 weeks depending on how well he does and when Dr. D, Dr. P and Dr. K say he can come back to WV. I ask you to pray for us in the up coming months. Once we start round #5 of chemo life will be even busier than before. Derek still doesn't know that he is sick. He runs around (just like right now, he blasted by me to get to jump on Kayla's bed, now he's running down the hall to finish his Elmo video) like there is nothing wrong with him. We can only pray that this is God answering prayer and he has already healed Derek. Once again I ask for prayer for our entire family. Thank you and may God Bless!!! Wednesday, October 29, 2003 7:43 PM CST We made it home from the hospital Monday evening. Derek and Kayla were once again glad to see their toys. Shawn and I were happy to see our own shower and bed. Derek has only vomited once since we have been home. He is drinking a good variety but still can not eat much. We are doing our best to avoid infection this round. We will be going to the hospital on Friday the 31st. If Derek is doing well Kayla will get to do a little candy collecting. We thank you all for your prayers. I wish everyone could see him and how well he is fighting this. We have a hard 4 or 5 months ahead of us but find strength in our friends and family. It also helps to feel his little arms wrap around our neck. We love you all!! Sunday, October 26, 2003 8:47 PM CST Derek is on his last 24 hours of round 4 chemo. He has done well. The only problems have been a little up-chuck on Saturday morning and a Lucky Charms marshmallow in his hair. He was eating dry Lucky Charms and I guess decided didn't like this specific marshmallow so decided to stick it in his hair. That must be the obvious choice for an 18 month old. Needless to say the entire 5th floor was in trying to figure out how to get this out of his hair without cutting it out. Nothing worked so out came the scissors. Nothing else has really happened. We are just ready to get out of here and go home. Hopefully Derek will do good and we will have an extended stay at home. Once we start round five of chemo life will be even busier than before. He will have surgery, 6th round of chemo then transplant, check-up visits and radiation at Duke. Dr. K said we may not be down there as long as we think because Dr. D at Duke will release Derek to Dr. K and Dr. P early because they work close together. Please continue to pray for the family in the up coming months.
Friday, October 24, 2003 2:57 PM CDT We got to CHH at 9 this morning. We went to CT scan at about 9:30 but he needed to be put to sleep so it was rescheduled for 1 o'clock. He was back awake by the time he got settled back into his room. They said we wouldn't get the results from it until in the morning but Dr. P from PICU saw it and said it looked good. All his blood work looks good so we are just waiting on the Ph levels to come back good to start his chemo. Dr. K examined him while he was still half asleep and said he looked good and she could only feel a small tumor now. We will keep everyone updated thru the weekend. Wednesday, October 22, 2003 3:17 PM CDT We arrived home at a little after 9 o'clock last night. They got all the required stem cells on Monday. They needed 10 million stem cells. They collected 5 million on Friday and 10 million on Monday. This was an answered prayer/prayers because it was supposed to be hard to harvest stem cells after his 3rd round of chemo because it doesn't stir the stem cells. We have to go to Dr. Nicholas (Derek's pediatrician) tommorrow morning then we go in Friday for a head CT scan and start round 4 of chemo. The reason for the CT scan is that Derek had a calcium reaction on Monday that caused face and eye spasms. Dr D. at Duke said he was sure it was the calcium but wanted a CT scan to make sure. Please pray that it will be O.K. We shouldn't have to go back to Duke until late December/early January. When we go back we will be there about 12 weeks (6 weeks transplant & 6 weeks post transplant check-ups at Duke). Derek is doing well. They only thing different after harvest was longer naps. That has already wore off. Cheryl tried to lay down with him today for a nap but he wouldn't go to sleep. He has been eating very good which he normally does right before a round of chemo. Pray for his chemo and CT scan and the family in general. Sunday, October 19, 2003 1:08 PM CDT We received a call Friday evening saying they got half of the required stem cells from Derek. They are encouraged because his count was just a 14 and had only received one high dose of Neupogen. We went back a little while ago for blood work and he needed platelets. We go back tommorrow at 1 o'clock for round two of stem cell harvest. We should know tommorrow evening if we have to try Tuesday or if we have enough. I spoke with Alexis Chapman's dad and she is back in the PICU and hasn't left Duke since I told you she was going down there. Please say a special prayer for her and the family. I'll try to update again tommorrow. Friday, October 17, 2003 12:00 AM CDT We arrived in Durham at 10 o'clock last night. We arrived at Duke at 8 a.m. this morning for blood work and a CD-34 count which returned at a 14. So Derek is now being pherised/harvesting stem cells. They said we will get some today, come in for blood work Sunday and then harvest again on Monday. They just fired up the machine about 5-10 minutes ago and he is just watching Elmo. They said they would harvest for 2-3 hours. Everything looks good so just pray they get enough stem cells and he does fine thru this process. Monday, October 13, 2003 7:16 PM CDT We went in for Derek's check up this morning and his blood culture they took Friday still is not growing anything. His white cell count is coming down so Dr. K said she looks for us to go to Duke at the end of the week. We are all packed and ready because you never know. Derek just fell asleep because he only had a 30 minute nap at noon. Unfortunately he didn't get his shot of neupogen so he'll get another one while he is asleep. Hopefully he will do as good as last time. We will go back to CHH in the morning and every morning after until his counts are just right. His stem cell count has to be a 10 to harvest so when it gets to a 5 here we will leave for Duke. Not much else to tell just playing the waiting game. Saturday, October 11, 2003 9:00 PM CDT Sorry! It's been awhile since the last journal but we've been home and enjoying it. We were going to leave for Duke tomorrow but that has been canceled. His white cell count is too high and his CD-34 count is too low. We go back to CHH Monday morning for blood work to see how things are and about when we should head for Duke. Derek has been drinking well and started back eating a little yesterday morning. This round of chemo was supposed to be the worst but so far he has done well. We also received word that his bone scan came back NEGATIVE!!!!! Everyone is doing fine. I had to run to Krogers so they rode with me and Kayla and Derek fell asleep. They transitioned from the truck to the bed without waking. The only problem was Derek hadn't had his shot of Neupogen. So I gave it to him asleep. I thought for sure he would come out of there screaming but he just rubbed his leg and turned over. It's obvious God is answering our prayers with the scans coming back good so we ask that you continue helping us pray for Derek's continued response to treatment. May God Bless each and everyone!! Tuesday, October 7, 2003 8:27 PM CDT We just returned home at about 1 o'clock. Derek's appetite is next to nothing but he is still drinking ok. The doctors and nurses seemed amazed at how well Derek tolerated this round of chemo. This round and his 5th round are more likely for kidney damage and making him nauseas. It also can cause high frequency hearing loss. His kidneys are doing well and so far he hasn't been sick so after all his chemo a hearing test will tell if his hearing is ok. He goes back Friday for a check-up. Then we will go to Duke on Sunday. Dr. P said he wanted Derek at Duke when his blood counts were bottoming out so as they started to bounce back we would be there and hopeful not miss the perfect harvest time. The CT scan results were a welcome change. Seems like all the news has been discouraging with all his infections and all it was great to hear the chemo is doing it's job as a response to all of your alls prayers!!!!! The bone scan results won't be back for about a week. Dr. P said he would be very suprised if something were to show up because of his tumor shrinking and no new spots. We really appreciate Joyce Bowyer, Debbie Morrison, Valerie and everyone else that was involved in the bake sale for Derek. I don't mean to leave anyone out but I know alot of people donated baked goods and time to it so if you were involved in anyway we really appreciate it. I also appreciate the guys from IBEW L.U. # 317 for donations on the job and at the union meetings. You guys prove your not a bunch of roughneck construction workers but good hearted, special people that take care of each other. As I have said before this is very, very, very, very, very understated but we thank each and everyone of you for all that you do and have done for the Bostic family and especially the PRAYERS for Derek!!!!!!!!
Sunday, October 5, 2003 7:43 PM CDT Derek is currently in Cabell-Huntington Hospital receiving another round of chemo. He started this four day round on Friday, and it will be completed Monday evening. He then has to have a 6 hour session to flush his body, so he won't get to go home til Tuesday. Dr. Pendleton (Dr. P) is pleased with his progress in this round. Tests show his tumor has shrunk over 50% so far. New cat scans show no new spots. Thursday, October 2, 2003 8:58 PM CDT Derek has been playing and running around the house. Tomorrow is our last day at home for awhile. He goes in Saturday morning for round #3 of chemo. He will also have a CT scan while we are there but not sure when. Not alot to tell. Everyone is doing pretty good. Tuesday, September 30, 2003 9:04 PM CDT Just got home at about 7:30. On the way to Duke Sunday we got a call from Duke saying Derek had an infection and we needed to come straight to the hospital. We were just east of Winston-Salem. They started him on antibiotics and did a CD-34 test (shows stem cells are able to be harvested). His CD-34 test was a 1 and needed to be a 10. So the plan is now to continue antibiotics and start round #3 chemo on Saturday. Then when his counts start coming up after chemo go back to Duke and do the stem cell harvest. The problem is is that he always has an infection at the time his counts start rebounding. This process is very, very, very, very frustrating!!!!!!! We can't plan life anymore so to speak. You think and do one thing one minute and do a 180 the next. Physically I think we are all right but emotionally and mentally we are exhausted. But there is no time to be tired in any way, shape or form not with antibiotics, chemo, daily check-ups then back to Duke. Then there is Derek who runs around playing and trying to jump off the bed like there is nothing wrong with him. He is doing well and the doctors seem to be pleased with how he is responding to his treatment. We can only hope and PRAY he continues this way. Saturday, September 27, 2003 11:42 AM CDT Derek is still playing and running around. We went for blood work this morning before the Duke trip. Everything was normal and Dr. K was pleased with how he looked and acted. They still want us at CHH directly after his stem cell harvest to start chemo. I guess we will leave for Duke in the morning and return-?????????? Guess I'll get off here. Alot of laundry, packing and cleaning left to do. Thursday, September 25, 2003 9:24 PM CDT Just got home at about 8 o'clock. Everything went well but it was a long day. They also didn't remove his temporary line while he was asleep getting his new line. Instead they waited til he was awake and sent him to the Peds floor for them to remove. Thank God for the girls on the Peds floor!!! They are always easy and gentle with Derek. You guys are the BEST!! Now we have to go back to the Peds floor sometime Saturday for blood cultures. Then we leave for Duke on Sunday, do blood work on Monday and stem cell harvest on Tuesday and Thursday. As soon as we return from Duke he has to have a CT scan then start his 3rd round of chemo. Derek is now sound asleep. As soon as we got home he wanted Cheetos and Elmo. Everyone please pray that this line doesn't get infected and the stitches heal up the way they are supposed to. Thanks in advance for your continued prayers for Derek. Tuesday, September 23, 2003 8:19 PM CDT Still not alot of info. We're playing the waiting game. Derek went in for a check up this morning and all his blood work was normal. His blood cultures (how they tell if he has infection in his body) they took Friday were negative. They took another blood culture today to double check. The unofficial plan as of now is surgery Thursday to put in his new central line. Then we will leave this weekend for Duke and start his stem cell harvest on Monday. Nothing is concrete (it hasn't been for 2 months) so I may be updating tomorrow with a completely different plan. Monday, September 22, 2003 9:11 PM CDT Derek goes back tomorrow morning for a check up. His old central line site is looking good and healing well. His new temporary line looks good and is working good. We should know tomorrow when they will put his new central line in. Derek has been playing really well and still eating somewhat. He got in a 4 hour nap this afternoon. Not much else to tell. I'll try to update tomorrow evening. Friday, September 19, 2003 8:42 AM CDT Derek is doing and feeling well today. Dr. K just came in and said his counts are up and she's pleased with how he is doing besides the infection. Yesterday he started growing an infection in his central line. The anchoring stitches have also tore thru his skin so the only thing holding it in is tape. The plan is today at 2 o'clock to remove his central line and put a temporary line in. Dr. K said she was trying to get us out of here this evening. She wants to see him Tuesday to check his counts and the infection. When the infection clears up (probably Thursday of Friday) they will put a new, smaller central line back in. The little girl I mentioned last journal entry is 19 month old Alexis Chapman. Please add her to your prayer list. She also has stage 4 neuroblastoma. So when you pray for Bub pray for Alexis as well. She is in PICU now from her surgical biopse yesterday. They said it's not on her lung but growing behind her lung. We thank all of you for care enough about Derek to check this site 2000 and some odd times to see how he is doing. Wednesday, September 17, 2003 8:10 AM CDT We went in for Derek's check up Monday and everything looked pretty good. Right before we left they took his temp. and it was normal. Before we got home he was in the back seat shivering. We got home and took his temp. It was 103.6. We called Melissa (outpatient chemo nurse) who called Dr. P who said to bring him back in. Now we get to do another 10 day round of antibiotics. Everything is pushed back until his infection is cleared up. Dr. P said Duke was putting patients off because of the hurricane so we probably would have been put off a week any way. Once his infection is cleared up everything will be back on track. We'll go to Duke then back here for his 3rd round of chemo. Derek was feeling pretty yucky yesterday evening. They gave him blood and some Tylenol and he has perked back up somewhat. We found out Monday that CHH has got their 2nd case of Neuroblastoma. She's a little 19 month old girl. Her's is similar to Bub's but her's is on her lung and in the bone marrow. We ask that you add her to your prayer list along side Derek. We have talked with the family and they are good Christian people. They said alot of people are praying for her already. This website alone will add thousands of prayers for her. I really appreciate Uncle Mike starting this website for Derek. It has reached to Alaska and overseas. That means that much more people praying for Derek and his new little friend. Sunday, September 14, 2003 8:56 PM CDT I don't have the mental capacity to put into words the appreciation that the Bostics have for Cyrus Creek Church and everyone else that was involved in the gospel sing last night for Derek. Mom and Tammy told us all the evening events from trying to fit all the cars in the parking lot to Channel 3 News showing up. I'm sitting here trying to think of how I can tell you guys what you mean to us. Words just aren't enough. I'd say the folks over at Cyrus Creek have an idea of what I'm trying to say. It seems like the church has had one tragedy after the other in the last 5 years or so. And it still amazes me how much love is in the Cyrus Creek Church family. We all come together and support each other in the good times and the bad. I'm very proud to say that I'm a member of Cyrus Creek Baptist Church. I don't want to limit my appreciation but to extend it to all Churches, friends and people of the community that have said "If there's anything I can do". And you have by everything you have done, especially praying for Derek. I guess we'll go back for a check up tomorrow morning to check his blood counts. We should leave for Duke sometime next weekend. We'll be down there for his stem cell harvest. Then directly after that we go back to Cabell Huntington for his 3rd of 6 rounds of chemo. I guess I'll sign off because my lack of knowledge is really hindering me from saying what is on my heart. I can only pray that God will bless each one that has done anything for Derek and the Bostic family. Friday, September 12, 2003 9:54 PM CDT So far Derek is still doing good. The past three days he has had about two crying spells a day. They last ten to twenty minutes and there is no getting him calmed down. Dr. K said it may be the bone/joint pain from his Neupogen. Other than that he has still been eating and playing well. I had planned on making an appearance at the gospel sing tomorrow but Dr. K told us his blood counts would be bottoming out sometime this weekend. So I guess I'll stay away. There would be alot of shaking hands and hugging so I don't want to bring home any nastiness (germs/viruses). We really appreciate everyone that's involved in the organizing and working of the gospel sing. We hope everyone gets to fellowship and have a good time with one another. May God Bless You All!!!!!!! Wednesday, September 10, 2003 10:01 PM CDT Back to the hopital again today. Yesterday we were supposed to start drawing back and flushing his lines everyday/once a day to keep them clear. Namely the red one. It has been giving us fits since it was put in. It will flush but won't draw back (stuff goes in but won't come back out). We drew back and flushed his blue line. It worked beautifully. Then the red one wouldn't draw back but about 1/4 of a cc. We needed 2 ccs. We called the Peds floor at CHH. They said to call this morning to see what Dr. K and Dr. P wanted to do. I got a hold of Melissa the out-patient chemo nurse who then talked to Dr. P who said to bring him in. He said he was pretty sure it was a blood clot at the end of his red lumen line. He ordered TPA to be put in the red line for 6 hours to see if it would draw back. He also order blood for Derek. His blood count was low so Dr. P wanted to go ahead and give it to him instead of waiting then having to bring him in this weekend when he had to have blood. At 4:30 Melissa drew back the TPA on the red line. It worked great. This told Dr. P that putting the TPA in for 5-6 hours was only dissolving the majority of the blood clot but not all of it. So he ordered the TPA to be put in his line over night to completely dissolve the blood clot. So we have to go back in the morning at 9 or 10 to draw the TPA back out of his line. Hopefully we will be there just a short time. All the people that work at CHH are WONDERFUL. All of his nurses and doctors have been great. I honestly don't have a complaint about any of them. They treat Derek like he is their kid. If anyone at CHH reads this we really appreciate the care you have given Derek. And everyone else that reads this we appreciate the care, concern, love and mostly prayers for Derek. Monday, September 8, 2003 9:35 PM CDT We made it home this evening at about 8:30. Derek is still doing pretty well. His eating has slacked off some but he is still eating. His main dishes include Doritos, Cheetos and KFC mashed potatoes. When we went in the hospital Friday his white cell count was up to 7.3 but when we left this evening it was already back down to 3.9. We have to go back on Friday to check his blood counts. We will be back to the hospital frequently because when his blood counts start rebounding they have to do a CD-34 test. This test is to see if Derek's stem cells are active and able to be harvested. We thought we would have to go to Duke for this test but a Dr. Harris at St. Mary's can do it and send the information to Duke. When his CD-34 test comes back to Duke's satisfaction we leave for Durham. We originally thought he would be inpatient for his harvest but it turns out he will be at the Dr.'s office on a Monday, Wednesday and Friday for 3-5 hours a day. I think after this is all over I may become a nurse or a doctor. I'm getting pretty good at this medical terminology and procedures. I jokingly told Cheryl I would have to do this as a 2nd job to pay the hospital bills. But seriously, they can come and take everything that I own (which ain't much) as long as they fix Bub. That's my only concern in life right now. We appreciate our family, church family (not just Cyrus Creek) and friends (neighbors, co-workers, etc.) for your unending support of the Bostic family. Saturday, September 6, 2003 7:41 PM CDT This is Uncle Mike again reporting that Derek is now in the hospital receiving his second round of chemo. After about 24 hours of this round, he is still eating good and playing well. Thursday, September 4, 2003 5:19 PM CDT We just arrived home at a little after 5 o'clock. The kids did very good on the trip. Kayla did good at the doctors office. We will get to sleep at home tonight then get up in the morning and go to Cabell Huntington for his 2nd round of chemo. As soon as his blood counts are up we have to go back to Duke for his stem cell harvest. We will be there a minimum of 3 days but more than likely a week. We may be there even longer. They told us when we get down to Duke he will have to have a special test to make sure his stem cells are active and able to be harvested. They said it may take a few days for this. The stem cell harvest consists of a collection of stem cells on a Monday, Wednesday and possibly Friday for 3-5 hours each day. We will not be admitted to the hospital. It will be done in the clinic. We have a lot to do before tomorrow so I'd better go. Monday, September 1, 2003 8:27 PM CDT Today was Bub's 3rd good day in a row. We took him for a wagon ride this morning to the end of the subdivision for some fresh air and a change of scenery. Then we went in and I gave Bub a bath while Cheryl and Kayla jumped in the other bath. Donna showed up so I then went out to mow the lawn. She brought Bub and Sis each a Happy Meal which he ate some of. The last few days he has been on a Cheetos kick. Before that it was Doritos. He usually takes a day or two and eats one type of food until he gets tired of it. Just about everything he eats is junk food but Dr. P and Dr. K said to give him all high calorie/high fat food. He has been learning bad things from Kayla. He watches her as she jumps off our headboard, onto our bed, then onto her bed which is at the foot of our bed. Upon watching this he reaches his little arms up to me so I can assist him do the same as she does. Unfortunately I can't tell him no so here he goes jumping just like Kayla (don't worry I'm holding him the whole time). He laughs and laughs and laughs which is very good to hear. This evening Cheryl was tickling his belly and he was laughing like crazy. He hasn't laughed like that in quite a while. Unfortunately his good streak is coming to an end. Friday he starts his 2nd round of chemo. I hear there is still confusion of the schedule of Bub's events. As far as we know Thursday we go to Duke for the stem cell preliminaries. Friday he starts his 2nd of 6 rounds of chemo. After this round of chemo we go back to Duke for the stem cell harvest. After his 5th round of chemo he has his surgery to remove the tumor. After which he will have radiation on his abdomen at the tumor site. After he finishes his six rounds of chemo we go to Duke for his stem cell transplant. We will be there approximately a month. Now you know as much as we do. We miss everyone we are used to seeing all the time. I guess it will continue this way until Bub is done with his stem cell transplant because it will be until then that his white cell count will be below normal. From here on out we have to ask that only family come to visit Derek. We hate to ask this but we have to put Derek's well being as our main priority. With his white cell count low he will be very easy to pick up infections and bugs that he normally could fight off. Once again we miss everyone more than you know and hope you stay in a constant state of prayer for Derek. We truly appreciate more than you will ever know everyones love they have shown Derek and the entire family. Saturday, August 30, 2003 4:05 PM CDT Today has been a good day. From 8:30 til 2:00 me and Kayla played in the garage and outside. The only interruption was the rain and potty/check on Derek breaks. Cheryl and Derek was out with us for about 1 1/2 hours before he had to go in for a much needed bath. There was no laundry, house cleaning, bills, errands or insurance calls at all today. It was very nice. Life was almost normal. Derek played and ate well today. He didn't have a substantial meal just a lot of snacking which is more than he has done in a while.
Friday, August 29, 2003 9:21 PM CDT Derek has done pretty well today. He has had a few bad moments but I can't blame him. I guess with his blood counts improving and being at home he feels like a new man. He still has some hair even though alot has fell out. He is 23 lbs. 11 ozs. When this started about a month ago he was pushing 30 lbs. He liked the home health nurse. I think he didn't realize she was a nurse since she was at his house/territory. Every day after a hospital stay is crazy. Today was no different. Go to the drug store, grocery store, post office, gas station and the bank. Come home sort thru mail, see what bills need paid, do laundry, dishes, talk to insurance/case manager people, call about the 2,358 (just kidding) medical bills that were in the mail sending me the total bill instead of waiting for the insurance to pay then send me a bill. The whole time Kayla is tugging at my leg wanting to play. Just another day in the new and every changing life of the Bostics. It's 10:45 so I have another hour until Bub's next dose of antibiotics so I guess I'll get off of here and do some odd and end things around here. Keep up the love and prayers for Bub. Friday, August 29, 2003 0:23 AM CDT Here it is 1:20 AM and I'm on the computer. I think I have lost my mind. We just got home about 40 minutes ago. We were very anxious to get home after a 5 day stay in the hospital. Derek's blood work is still improving. Some is back to normal but others are not. Such as his white cell count. For those that may not know white cells fight off infection. When we were admitted Sunday his white cell count was .1 and this morning it was 3.1 normal is between 6 & 14. This mornings shot of Neupogen (this helps his body build up his white cell count) will be Bub's last until after his next round of chemo. In 7 hours the home health nurse will be here to start me and Cheryl on his antibiotics. We will then take over and administer until Wednesday. Thursday morning at 8:30 AM we will be at Duke for our missed appointment concerning his stem cell transplant preliminaries. Then it's back to Cabell Huntington Friday for his 2nd of 6-72 hr. rounds of chemo. I hope you can understand what I have typed here cause right now I don't think I can. Well I'm off to bed for a 5 hour sleep then it's back up to greet the home health nurse. Thank you and may God Bless everyone that looks at this site, prays and is concerned for Derek. Tuesday, August 26, 2003 9:03 PM CDT Shawn asked me to post an update since Derek is still in the hospital. Dr. K came in to see Derek yesterday and she said that the tumor had shrank remarkably. His liver functions are still good even though the liver shows some spots. Blood tests show he is slowly building up his numbers again.
Sunday, August 24, 2003 7:13 PM CDT Today, Derek was fussy and obviously not feeling well. His temperature was 102.5. Dr. Pendleton was called and he told Shawn and Cheryl to bring Derek to the hospital. He was admitted to Cabell-Huntington with a white cell count of .1 (normal is 6 to 14). He was dehydrated and it is assumed he has an infection somewhere but with the very low white cell count, is unable to fight it off without antibiotics. They are giving him a chest xray right now. He will most likely be in until Tuesday or Wednesday. Dr. Pendleton will call Duke tomorrow and reschedule the blood work for the stem cell harvest for next week sometime. Friday, August 22, 2003 6:38 PM CDT We did not go for his check up today. Not long after I typed the last entry the doctor called and said to wait until Monday. So we get to go for his check up at 8am Monday then leave straight from there for Duke. Yesterday Derek wasn't perking to well. He wasn't eating or drinking well and was fussy. Today he is like the Derek we know and love. He has been eating, drinking, laughing and playing. I had to go to the credit union this morning so Cheryl said her and Derek would go along for the ride. Good decision because Derek got a good nap on the way there. When I got on his site just now he had 437 views on his site. We can't put into words how much we appreciate your love and concern for Derek. Please continue the prayers, thoughts, cards and phone calls. They don't bother us at all. It shows how much support Derek has. The only thing is is catching us between Cabell Huntington and Duke. Thanks for everything you do for us!!! Thursday, August 21, 2003 10:02 AM CDT Cheryl decided we needed to tell the story from the beginning for those who may not know. On Monday July 28, 2003 Derek was playing in the house without his shirt on. Cheryl noticed a knot on his right stomach. She showed it to me that evening when I got home from work. I gave her a typical dad answer and said he probably fell and it would be o.k. The next morning it was still there so Cheryl took him to mom's (Goldie). They decided to see Dr. Nicholas. Upon seeing this he called the hospital to see about a CT scan and ultrasound. They couldn't do it until Friday August 1, 2003 as outpatient. So he then made the call to admit Derek for these test immediately. THANK YOU DR. NICHOLAS!!!!! After those tests they could tell he had an abdominal mass but was unclear what it was. He had many more tests and blood work. They then started thinking it was a Welms or a Neuoroblastoma tumor. They hoped for a Welms because it could have been begnign and easily treated. Unfortunately this was not the case. After a special urine test and surgical biopse it came back as a neuoroblastoma tumor stage 4. It is considered stage 4 because of his main abdominal mass, 2 spots on his liver and in his surrounding lymph nodes. We went to Duke for a MIBG scan (they couldn't do it in Huntington/ very high tech). The scan showed Derek's body clear of neuroblastoma cells other than his tumor, spots on his liver and surrounding lymph nodes. Derek finished his 1st out of 6 72 hr. rounds of chemo August 19 at 1 am. Upon discharge they told us he would be having a stem cell transplant. Someone had jumped the gun and told us he wouldn't have it. Dr. Pendleton assured us nothing had changed and it was always more of a chance he would have the stem cell transplant than not. So here is the latest update on what is going on. Tomorrow morning we go back to Cabell Huntington for a check up and blood work. Tuesday Aug. 26, 2003 at 8:30 am we go to Duke for a physical exam, his medical history, draw lab/blood work and sign a consent for his stem cell transplant. I'm sorry to be so long winded but Cheryl and I want everyone to know the whole story and be as updated as possible. We thank everyone for the prayers, thoughts, cards, phone calls and finacial support. There is no way we will know who has done what for us so if your reading this consider this a personal message from the Bostics to You. THANK YOU FROM THE BOTTOM OF OUR HEARTS. Wednesday, August 20, 2003 11:41 AM CDT Derek came home yesterday from the hospital after 72 hours of chemo and blood transfusion. His blood count was down to 6. (11 to 14 is normal) The Dr. says the tumor is taking his blood supply. When the Dr. came in to release him he dropped a bomb on us. Another trip to Duke. He has to have a stem cell transplant. We don't know any info yet. Duke will be calling today. Seems like everyday something is new and it keeps changing. Keep praying!!!! Though all he has gone through Derek still has his beautiful smile that lights up our world.
Sunday, August 17, 2003 6:11 PM CDT Derek's was 15 months old when he was diagnosed with Neuroblastoma Stage 4. He was at Duke this past week for a BIMG scan that showed cancer localized around the tumor only. He is currently in the hospital undergoing his first round of chemotherapy. Please check back for additional updates.
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