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Click here to go back to the main page. 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 |