Glitter Graphics

Monday, May 1, 2006 10:27 PM CDT

we spent last week at cincinnati childrens hosp. they did a lot of tests. the results are that it is neuroblastoma and it is in many different places. lt. humerous, (upper arm)lt. side of pelvis (maybe attached to bone or on it's own), lt. femur (big bone upper leg),and lt. tib. (the one that is active and we knew about it.) we are doing radiation, started
today. after a month or so we will be doing chemo. so far that is it in a nut shell. he has pain at times but the meds and radiation will control that with time. i'll try to write more often. love ya tammy

DISNEY lyrics

*HUGS* TOTAL!
give BJ more *HUGS*

Get hugs of your own

Saturday, April 22, 2006 0:39 AM CDT

hi guys. well, we won round one. we are now entering round two. some of you have heard, bj's cancer is back. it is in his left knee. actualluy is it shown in the mri to be where the two lower leg bones attatch to the rest of the knee joint. we have done a biop. and do not have an offical report but his primary oncologist looked at the slides and is sure. we also have meet a dr. at childrens hospital, who wants to do some tests. the results will determine what our opptions will be. i am sure of two things, 1) he will not suffer. i mean no pain. and 2) quality of life is most important next to pain. we still have a lot of questions. the anwsers will narrow our options. from those i will have to pick the best one for my child. my only child. this is by far the hardest of the two rounds for me. i predict that it will be for bj as well. he is older and smarter than most kids his age. he understands more about his illness than last time. he asks questions. and knows more about hospitals than he does about school. that atomsphere is as fimiular as home. school is the place where he is not accostum to being. for most kids his age it is and should be the other way around. dr.s and hospitals should be unfimular. in conclusion, we will go for those tests next week, i guess i will get results around mon. i hope. well, i gotta go love you all. t.

Friday, March 3, 2006 1:50 PM CST

hi guys i thought i would update. there is not much to tell, but you know me, i get to typing and it becomes one long thought stream. lol BJ is doing well he still goes to school two days a week. so far he likes it. he is able to say about half of the alphabet and still counts to 10. he seems to have caught up with the other kids accedemicly. socially he is working on it. i think when he goes to kindergarden next year he will catch up. they go all day and he needs all the time he can get with the other kids. i truely believe that being with the other kids will help him to learn those socisl skills that he missed out on when he was sick. i refuse to hold him back in school just because of that. i really think that at his age he will catch up on his own. keep in mind that i may change my mind the closer it gets to kindergarden starting. however, at this time i am firm in my decision and beliefs. maybe i feel that way because i see the improvments that he has made in the last 2-3 months. i guess that i believe in BJ and his strenghts. i know my son and i know how tough he is. i know what he is capable of. right now at this very minute he is singing with the characters on t.v. it is so cute i will have to figure out how to get his voice on this stupid comp. lol oh well, i'll try to update more often now that i have the dsl thing , i think , it's the one from verizon. gotta go love ya tammy.

Thursday, February 2, 2006 12:32 AM CST

hi ya'll. bj had a ct and a bone scan yesterday. he did very well. he has had so many of them he is a pro. he lays still for the scan and when he is done he gets a small gift, from the dollar store. this time it was a squishy lizard. he loves those squishy animals with little beans inside. i should get the results back tomorrow. i think if there were something wrong i would know.lol i feel like i would see signs in how he feels and acts that would give me a hint that the nb had come back.lol i hope but in reality no one knows that's why we scan. it is foolish to think that i would know. but i guess that's what keeps me sane while waiting for results. lol am i the only mother that feels this way? probably not. oh, well. bj likes school and is doing well. he still needs to catch up with his class but he has only been going for a few months. he goes two days a week so maybe when he is able to go more he will get more used to the routine. i know that he will catch up. he just needs time. those of you who know me know that i am a patient person and time has very little hold over me. he is to smart not to catchup. and if he's not ready i will not send him on (kindergarden). well i like the "stupid comp." much better after defrag. i hope to find time to update more often. i also plan to get dsl. i think i'll get more use out of it if i do. now if i could just spell and type.lol well, gotta go love always tammy

Saturday, January 28, 2006 4:30 AM CST

hi ya'll. we are doing well. bj is now 5yrs. old and 1 yr post transplant.yeeee haaa!!!! he goes to pre school 2 days a week and loves it. he likes being with kids his own age. it has been a wild ride this past year. as you know last year he spent his birthday on the vent. look at him now!! no one would be able to guess what all he has gone through. he is 43 and 3/4" tall and weighs 43lbs. he is everywhere at once. i guess i look back too much because i seem to have a little insomnia tonight. oh well i'll sleep in class tomorrow haha just kidding. when i get on here i have a tendency to reflect and vent and type...... i guess i use this site as a sounding board and to pass info on. i guess that's what it is for. i am glad to have a site to do that on. i hope to one day learn how to do other stuff on this stupid comp. haha. i did learn that you have to do a defrag thing today and how to send pics via e-mail.haha....thank you mamaw wanna. as i look back i think the tide started to change in sept. a lot has happened since then. bj lost two teeth and new ones are comming in. i was worried they may not because of the chemo. he has started school, had a bitrhday, had a transplant day, had a visit from aunt steph and uncle chris, got his make a wish tv. he has a pet frog, that i found on the job site in nov. we had a little warm weather and i guess he thought it was spring so, i brought him home and set up an aquireium. bj named him "the cricket eater". i suggested that we call him Wayne, after the school i was working on. we compremised and he is "Wayne the cricket eater." bj also got to go to the ice capaids with the make a wish people. they treated us to dinner and a show. there he got to meet a few princesses and i think he feel in love with Belle from beauty and the beast, because he was running around and when she walked in he went totaly still. he was completely mismerized by her. his eyes never left her, and he got tohave his pic taken with her. look out Jenny!! here comes Belle!!! lol. he had a very good time that night. so yeah this has absolutely been a very happy time for us. things are starting to look up. i think that the wheel of fortune has turned and we are on the up side again. let's hope and pray that it stays that way. thanks for letting me ramble in the wee hours of the morning. and for being pateint when i take 4 months to update. we have a lot to be thankful for. we are thankful for all the people who check on us and keep checking even when we don't have much to report. for all of my parnets ( yes i know. there is a story behind the misspelling of this word. i do it on purpose to put a smile on my sister's face.) without them we would not have faired so well. for all the people who have prayed for and with us. for our church family. for all my brothers and sisters in the union, knowing ya'll had my back gave me a tremendous amount of strenght that could not and would not have come from anywhere else. for linda hamilton who when i needed her listened to me, and gave her own stenght ( please someone show me how to do a spell check.haha) and comfort. she was there when it was darkest, and she took that in and held up a light for me to see, so i could find my way. for all the guys in my class they took care of us. they took part of the burden from me and carried it for me. i know that the weight of it would have crushed me if they hadnot. now let's talk more about my parnets....mom and frank were ther every day. they went through it with us. right beside me. the foundation, they held me up whe i could not hold myself up. i could write a book on all they gave up to be with us. on all the daily things they did for us. making sure i ate when i needed to and slept when i had to. there is'nt enough room to put all that in, so i'll write my thanks to them, as a special gift to them. and to my daddy and luwana, the miles tey put on that little car coming to see us...... the calls.... giving myself , mom and frank a break after travling so far .... again i can't possible put it all down....so one day i'll write it all down in a special letter to them. buddy and sarah writing and visiting... steph calling and visiting ... there are too many. i can't possible name all of the people and all the things they did to help us get through the hard times.so i'll just go for now and try again later. i am finally tried. to tired to type. but my mind is not depressd now. thanks for reading. now that my comp. is a little faster i'll try to write more often. love always.T

Thursday, January 12, 2006 8:01 AM CST

Hi everybody!! Another long time between updates----sorry, just not a whole lot going on, No News Is Good News!! BJ con't to do great, other than him and his mommy has had a little cold. The big news is BJ is having a BIRTHDAY!!! YEA, he will be "5" on the 15th!!!!!!!! Its so hard to believe that this day is here, he spent his last BD on the vent! The nurse was so sweet, I"ll never forget that day, she made Tammy,Hilda and Me all imprints of his hand and put it in a soft lil blue cover, it was so sweet,but at the same time gave me the feeling that she didn't think he would see another birthday-------WRONG!!!! Here he is and going full speed ahead! He is so full of life it is hard to look at him and believe that he was so sick just a short time ago! GOD is still working his miracles! BJ is truly our Hero!! Happy Birthday BJ!!!!! Mamaw loves YOU!

Saturday, December 10, 2005 10:40 AM CST

Hi everybody!! BJ is spending the weekend with us, mommy had to work and had class today, and mamaw/pa went to watch aunt Stephanie graduate from Alabama State with her masters in nursing, We are so proud of her! BJ woke us up this morning with the news....HE LOST ANOTHER TOOTH!!! WooHoo, he was so excited!!! I told him now he can sing the special song...All I Want For Christmas Is My two front teeth!!(its his bottom teeth) LOL He looks so cute. He got to spend yesterday with his cousins, Blaze/Dallas, they all had a blast!Well, just wanted to let ya all know he lost another tooth!! LOL He's in the tub so i better go check on him NOT that he would splash all the water in the floor or anything like that!!! LOL Happy Holidays to you all,
BJ/Mamaw

Sunday, December 4, 2005 2:59 AM CST

Hi everybody, hope you're all getting ready for Santa? Wow, its had to believe its alreday Dec.
BJs had CLEAN SCANS, and he has had his imuunizations he needed, SO....its off to school for him next week!! I know he is so excited, he loves to play with the kids!!!
I know we haven't been to good on updating lately, but he con't to do so well that sometimes we think you might just be bored hearing about all that. we're gonna try to do better! He is doing so good, he has lost his first tooth, and of course that was excitng. I don't remember if i told ya about his make-a-wish party??? Well,just in case i didn't, he got a big screen TV, and vcr/dvd/ and lots of movies!! He loved it! Those people are so sweet, they really love what they do, wouldn't that be a good job, just to go out and grant wishes and watch all those smiles on the kids faces?? I know it would have its very sad side to, since to get the wish you have to be a very sick lil boy/girl! We are so thankful for these people and making BJs wish come true! When he was at Duke, all he wanted was to come home and watch his BIG TV! Thank you Make-A-Wish!! We Love ya. Thank all of you who con't to pray for our guy, pray that he con't to thrive! We love you all! BJ/mamaw wana

Friday, October 21, 2005 7:55 AM CDT

Hi guys, well, i guess its been awhile since we updated....SORRY! BJ is doing GREAT!!!Him and his mommy came down for a visit last weekend, and BJ spent the night with me/pap. And we had a really good visit, BJ got to meet his brand new cousin(DALLAS), and of course he got to play with his best bud, Blaze, and of course he got to see his girlfriend..Jenny, its so funny when you speak of Jenny to him, he still says "thats not Jenny, thats my girlfriend" he is to cute! Its hard to look at him now, and even think about how sick he was this time last year! He looks so good, and he is so full of energy!
We had his transplant party on 9/24/05, which marked "1" yr. post transplant--he had so much fun playing with all the kids, and eating cake and brownies, we also had a balloon release. His mommy/daddy planted a red dogwood in honor of the day! It was a beautiful day in more ways than just weather!!
He will be going for more bld. work the 1st. wk. of Nov.(i think), anyway this will tell the dr. if he needs more immunizations or not, and hopefully he can get back to school. I hope he gets to go back soon, he misses playing with kids his age....OH YEA, and he needs to get into school work!!! LOL I'm sure the playing part will be the most important part for him!!! LOL well, I better close this for now, Just wanted to let you know what is going on in the world of "BJ"!!!Love you all, Luwana

Tuesday, September 20, 2005 0:17 AM CDT

hi guys. bj is doing well. in four days, we will celebrate the 1st annversery of bj's stem cell transplant. so we will "transplant" a dogwood tree. his favorite color is red so it will be a red dogwood. i will be sure to put pic.s on here. we are going to have a small get together and eat brownies, bj dosen't like cake. it dosen't seem like it has been a year. i guess we have been busy because time has flown by. as i reflect on the year i see some of the darkest times and some of the brightest as well. i know almost exactly where we were on this day one year ago. we were in n.c. at duke unv. preparing to be admitted the the transplant unit. on the 24th bj, mammaw, pap, and i went to the butterfly museum. we had a great day. we saw lots of bugs and butterflies. we also rode the train, we took lots of pic.s and then were admitted to the unit. they started his chemo that night or the next day. i can look it up but it is not that important. it was in the next few weeks that the world grew dark. and it stayed that way for a very long time. it was sad, heart wrenching, fearful, devastating and down right black. the kind of black that one would expect to find in a black hole in space. and then it got worse. he was put on a vent oct. 17th, 2004. he was on it for six days. on nov. 11th we were able to take him to the apt. he had been in the hospital for nearly two months. he started the radiation on nov. 29th. and started vomitting more than once per hourthe next day. we were told that the radiation could not be causing that. it was diffently something else. radiation was finished on dec. 14th and he was admitted again. we were told it was due to ativan ( the drug they gave for vomitting) overdose. but last time i checked o.d. didn't cause a temp. and they never did do anything about the vomitting. they let him go back to the apt on dec. 23rd. still puking. they thought he was o.d. because he slept a lot through the day, well if you were woke up to puke your guts up three to four times a night you would sleep through the day too. by jan. 9th he was back in hospital. on the 11th he went back on the vent.for seven days. while on the vent they sucked all the bile green stuff he had been puking up out with an n.g. tube. when he was taken off the vent, someone forgot to lower the ativan and his nurse didn't catch that he was getting a whole milligram. the result was that he didn't sleep for three days solid. and neither did i. he was so stoned he didn't know me, his own mother. he was on another planet in another solar system. bj's fourth birthday, jan 15th. he spent on the vent. i spent that day at his bedside crying. on jan. 31st. he was dismissed from hospital. we went back to the apt. and spent the rest of our time running to clinic, and trying to get them to lower his i.v. nutrion so that his body would want food and he would get his appitite back. we were fairly successful. we left n.c. on feb. 18th. we went back to wv. HOME!!! since then he has not needed blood and his appitite has been pretty good. in april he was admitted to hospital here for staph (mrsa) which made it necessary to remave his central line. in may, his dr. wondered where the sick boy was. bj's labs were as good as those of a kid who had never been sick. in june we went to the beach. the rest of the summer he played on his swing set and in his pool. he watched tv, and took log naps. we took him to the zoo and almost had to drag him out of the reptile house. we had campfires in the back yard and roasted marshmellows that we didn't eat. we laughed and cried when he didn't get his way. he started home bound pre-school the first of this month. he will go to the dentist for the first time on wed. and get the first of his immunizations over again on thurs. sat. we will celebrate the past year, all of it , the tears and the laughter. the dark and the light. it has been a long hard road, and when you are on the bottom all you can do is look up. things are going well now. thanks for all your love, prayers, and support. love always and forever, t.

Sunday, September 11, 2005 0:34 AM CDT

Hi, this is BJs mamaw wana again, just wanted to let ya know what is going on in the world of BJ!! Not alot really, he is doing GREAT! He did have is bone marrow aspiration on the 6th, and of couse we don't have results yet! Pray for good ones! We are coming up on his "1"yr.since transplant---9/24/04!!!Its hard to believe its already been a yr.! He is so busy just enjoying life. He is our HERO!
We love you all who visit and check on BJ, thank you so much for your love and support!

Monday, August 1, 2005 2:50 AM CDT

Hi guys, WELL, we all survived---not sure me/pap will ever be the same!! LOL--I guess you might say...we're not as young as we thought we were! LOL BJ had a really good time, I think he loved the snakes the most though--- Just like his mommy..he just had to touch them. I got close enough for a pic and that was it! I HATE snakes. We have several pics of Tammy with the snakes when she was a girl scout!She has always loved nature, so i guess it only makes since that BJ does too! He got to see lots of neat stuff and he loved the train and boat rides too. There was just to much for him to see, he didn't know what he wanted to see first.He is still on the accutane, which plays with his moods a little, so we did have a few trying moments----BUT we got through it just fine! On sat. we didn't have a plan....we just kinda wondered around, BUT Tammy got it all together for Sunday and we knew where we wanted to go,and which direction to go to get there! LOL..When she called before we went, the guy at the Zoo told her we could see everything in about 3hrs. NOT!! We spent about 4hrs.each day-and didn't see it all! It was really nice though, A little warm but several places to get in and cool down. (I'm at work..., just took a short break to let you guys know how it all went,so I guess I better get off her and do something..LOL)
Love ya all, Luwana
P.S. I'll add some pics when i get home on Wed.

Friday, July 29, 2005 10:15 PM CDT

Hi everybody...BJs mamaw Wana again! GUESS WHAT?? BJ is here with us again...and wow is he feeling good! I think he has just now started to wind down! It is so good to see him like this...we'll take this anyday than to have him back like he was a year ago! We feel so lucky to have him here with us, there were a few times throughout this last year that we wasn't sure if we would have him "1" more day... GOD had him in his hands is the only way to describe what has happened with him. We feel so much like he is our MIRACLE! Tammy said today that he will have to go back the 1st week in Sept. for a CTscan and also to check bone marrow.we just pray that they con't to be clean, I'm not sure how a little one with this much life could possibly be sick. He just amazes me everytime I see him. We are going to Col. Zoo tomorrow, he doesn't know it yet.....we would all be "nuts" if we told him in advance!! LOL When you tell him you're going to do something....he wants it NOW!!! LOL He will have a ball, as you all know that know him at all...he is all about animals. He can tell you the name of about every dinasoar(sp) that ever lived, he can tell you were they lived what they ate, you name it and he can tell you! He loves ALL animals. I could go on forever BUT I probably better get to bed to if I plan to keep up with him tomorrow! LOL We'll have lots of pictures! So be sure and check back in a day or so! Love you all, Luwana

Friday, July 8, 2005 7:28 AM CDT

Hi guys, this is BJs mamaw(Luwana). BJ is here with us for a few days!! We are enjoying this time so much! Bless her heart-------Tammy has called several times, this is the first time he has been away from her like this since he got sick, so of course she is "kinda,maybe just a little anxious" about the whole deal! BUT I can assure you "BJ" is having a blast!! LOL He got to go visit Ka-Lee yesterday, and then Blazer also stayed all night with him, and his girlfriend Jenny stayed til late, and we've got lots of stuff planned for the day. We'll be up and outta here before long, I think we're gonna have a picnic at the park, and just enjoy every minute of the day!!! He is doing great! we're gonna go get Ka-lee, and hopefully it won't rain and whatever these "3" want to do (HOPEFULLY) that is what we're gonna do. I don't get to see all of them at the same time very often so I'm gonna make the most of it! I'm trying to add some pics i took yesterday if i can, so be sure to check his pics. We Love you all and con't to pray for BJ, OUR lil guy is thriving! He is one of GODS miracle kids! Loving you all, BJs Mamaw

Wednesday, June 15, 2005 11:11 PM CDT

hey guys. bj is doin really well. we just finished up the fourth round of accutane, and he is tired and moody. something that happens on t.v. can make him cry. he is very emotional. but overall very happy. we have two more rounds to go and he will be finished with that. what has he been up to this summer? well he plays on the swing set his pap and mamaw built for him while we were in virgina beach. they did a " while you were out" while we were gone. he was so surprised when he saw it. and when he is not in the pool they got for him last week end, he is either on the slide / swing or he is asleep. someone should take stock in sun screen cause we are useing it by the buckets. haha. he is haveing a blast this summer. i think he is trying to make up for last summer. he is doing so well, i haven't been updating this site cause all i would say is " he is doin great". and that would get boring every day. so, i try to do it once a week. all of his labs are within normal range and with the exception of the accutane side effects he is " just like a normal boy" to quote his dr. we still have to be careful of certian things but all in all he is normal. it seems like it has taken forever for that to happen and we are making the most of every day. we are living in the moment. and are loving it. these are the days i prayed for and i cherish every second of every day with him. i thank God for giving him to me. and i thank you for your prayers as well. i know in my heart that every one of them was heard and answered. love ya tammy.

Tuesday, June 7, 2005 10:20 PM CDT

hi ya'll. we are back from the beach, and we had a really good time. bj played in the ocean and sand. we also went to the aquarium and saw lots of sea creaatures. he really enjoyed that. we got the results of his scans when we got home and they were both good. his lab work is within the range of normal kids. he looks good and feels great. to say that is is doing well is an understatment. he is doing well with his hearing aids as well. he likes being able to hear. we will do some sign language as well so we can communtcate when he isn't wearing them. he likes his new room and new house too. he is getting used to it being just me and him. the routine is more familar now and becoming easier. he still weighs 43 lb. and is 41" tall. so i think he has caught up and leveled off. for now haha. well i should go for now. we love ya. love t & b

Saturday, May 28, 2005 11:21 PM CDT

hi ya'll. sorry my last update must not have gotten on the site. now i don't remember what i put in it. so, i'll just tell ya the good news BJ GOT HIS HEARING AIDS!!!!!!! and he loves them. he caught on right away when i explained that they could never get wet or be slept in. he only takes them out before his bath and bed. then he wants them back as soon as posssible. his last labs were good to. he had a ct and a bone scan thurs. but i haven't got the results back yet. we are going to the beach and i will get them when i get back. i feel it is more important to have a good time with him than it is to know. and besides what difference is a week going to make anyway. none!the other goos news is we got moved into our new ( new to us) house. he loves his spongebob bedroom and has been sleeping by him self since we moved in. i still lay down with him until he goes to sleep but the rest of the night he's on his own. and the potty training is going well too. he still has an accident every now and then at night or nap time but on the whole he is doing very well. well, i gotta go, i must sleep. p.s. there are six night lights from my room to his, just in case he needs to get in bed with me. lol. i'll write more soon. love ya tammy

Friday, May 13, 2005 10:30 PM CDT

hey ya;ll. bj had culturers drawn mon. to check to see if the mrsa had been killed off. so far we haven't heard from his dr. i take that to mean that those cultures were neg. we will draw them again on mon. (this coming) it takes two neg. to be sure it was killed. they also draw labs at the same time. the last ones were very good. he is really enjoying being without i.v.s. we have even started potty training some. he is doing pretty good with it. today he poopped in the potty for the first time. it was quite an accompishment. he has had an accident or two but all in all it hasn't been to bad. we just have to keep at it. and he found a frog today. mamaw put it in a flower pot for him and he watched it for a long time, however, later when he wasn't watching it jumped out of the pot and escaped. go froggy go. he was upset for a little while but he understands that froggy had to go back home cause his family would miss him. well, i hope to tell you that the cultures are neg. next time i write. and that potty training is over, but let's not get our hopes up to high. these things take time, and anything worth doing is worth doing right. well gotta go, love ya. tammy

Friday, May 6, 2005 0:21 AM CDT

hi guys. the good news is bj has had the last of the antibiotic and the i.v. is out!!!!! he is tickled pink to be free. he got a hair cut and a bath as well. tomorrow we will have blood work done to make sure it killed all of the mrsa. he is now totally i.v. free for the first time in over 13 months. he feels good and is playing outside some. he started back on the accutane, which makes him grouchy and tired. this will be the 3rd round which puts him at the half way mark. this time he stayed grumpy during the off weeks. this makes me think that it will get worse as we go. his skin stayed dry as well. so, we will be very careful when he is in the sun this summer. i bought spf 60. so maybe it will help. i'm just glad he can go out side this year. at this time last year he was to sick to play inside let alone outside. we have a lot to be thankful for. good friends and loved ones. we are also thankful for all of the people who prayed for bj. i know that those prayers are part of what has gotten him this far. God moves in His own time and direction. i believe that prayers have been answered, and if it is his will then it will be so. so far He has given me my child. thank you. love ya tammy

Thursday, April 28, 2005 0:13 AM CDT

hi ya'll. we are doing well. hope this finds you doing well too. bj is still on the antibiotics and has an i.v. in each wrist. but he seems to be handling it o.k. he will continue to take the antibiotic until may 4th. so hopfullt we can keep the i.v.s that he has, as he is running out of places to put new ones. they have just about used up all the sites. his last labs were good and other than the anti. he hasn't needed anything else. he is still very tired, i think it's from the accutane. his mood is about the same. i can't decide if it is the meds. or the four year old, only child, i've been sick and always get what i want. lol either way we are dealing with it. life is not fair and that's when it sucks. but we still keep on keepin on. sometimes we cry and it makes us feel better. it is clensing and helps us to vent our frustrations. so weather we are four or thirty four, it is a good thing. well gotta go. love ya tammy

Sunday, April 24, 2005 10:38 PM CDT

hi ya'll. bj is home from the hospital. they removed his central line, and sent him home with an antibiotic. he has an i.v. in his left hand. and will get the antibiotic every 8 hours for at least the next week. otherwise he is doing very well. he is off the accutane this week, so about the time he gets straihgtened up from that it will be time to start that again. oh well that will be done in aug. we are almost half way with it. the next round will be the 3rd. and we have three more to go. i will call about his hearing aids tomorrow. and let the school know that he is home so we can get back to that. i don't have much else to say except that we appreciate all of the prayers and support. thanks so much. the out pouring of good will strengthen us in a way that is impossible to explain. may
god bless and keep you safe. love ya tammy

Tuesday, April 19, 2005 11:24 PM CDT

hi ya'll. well, dr. p. had bj's central line taken out today. all went well. he tolerated it well. and asked my mom "who took my tubes ?" when he woke up enough to notice that it was gone. the decision to take it out was made for two reasons. first it was an area where infection would collect and grow and second he did not get anything through iyt for almost two months. well, that is to say he didn't until he developed the mrsa (methicillan resistant staphlycoccus areus). i think i miss typed yesterday. it's methicillan not multi. now he has regular iv in his arm, which we will give the vanc through. we will have to do this at home cause he will need the vanc for two weeks. and there is no good reason to stay in hosp. for two weeks just to get an antibiotic. and expose bj to a lot of bad germs that he doesn't need to be exposed to.so if all goes well he will get to go home tomorrow. well gotta go love ya tammy.

Tuesday, April 19, 2005 0:00 AM CDT

hi ya'll. i know it's been a few days, but it's been a long week. bj has an infection, called mrsa ( multi resistant staph aureous.) so he was admitted to cable. they are going to take out his central line. it is a source of infection. so he'll go tomorrow for that. he feels better today than he did sat. they have been giving him antibiotics. i finally figaured out how to get this comp. to work in the hospital. but it's like 1 am so i'll try to write more later. love ya tammy

Wednesday, April 6, 2005 11:47 PM CDT

hi ya'll. we are doing fine. bj started on the accutane today, this will be his second round. only four more to go. so far he is doing well with it. the teacher from his preschool came on tues. she said he isn't to far behind and gave us stuff to work with him on. he needs to start to recognize letters and numbers. and learn to hold a pencil, but don't worry about using it yet. just learn to hold it. and the lady at the hearing aid place said we should know about his hearing aids by mon. so maybe next week we will have those. on fri. the speach therapy lady will come and evaluate his speach to see if he needs therapy. i'm not sure when the teacher from the school board will be back but i hope it's soon. she will be able to make sure that he will get all the skills he will need to start school on time. she has a list of things that the school board requires. so i am excited about getting that started. and i think bj is too. he really enjoys the teachers comming to see him. he learns quickly and thinks they are playing. to him they are more people to play with. he doesn't know that he's learning. we have always played and learned at the same time so it's all fun for him. i only hope it stays that way for him for the rest of his education. well i gotta go. love ya tammy

Monday, April 4, 2005 0:02 AM CDT

hi ya'll. we are doing well. bj is still eating well. he saw the dr. on tuesday and his labs were very good. so he will see him again in two weeks. hopfully dr. will do a follow up ct scan. just to make sure everything is o.k. i really don't have much else to say. we are just enjoying our time together and having fun. we would like thank everyone for their love and prayers. i believe that those prayers were instrumental in all of the miricales i have seen in the past year. thank you and God bless you and keep you safe. love ya tammy

Saturday, March 26, 2005 11:46 PM CST

hi ya'll. bj is doing well. he finished the first round of accutane on wed. then on thrurs. a teacher came to the house and evaluated him. he is a little behind but not to bad. she also said that a speech therapist would come and evaluate him for therapy. and a hearing impaired teacher would also see him to see if there is anything he needs in their field. so it looks like he will be starting home school next week ( spring break is this week here ). he will have a regular teacher for one hour a week, and maybe speech and hearing as well. the preschool taht he used to go to sent the easter bunny to see him. he loved that. he giggled and laughed. it really made his day. it was good to see him so happy. then today his daddy visited him. they played and watched t.v. it was good for him to get to see his dad. he was very tired and very happy when he got into bed. mamaw and pap brought his "girlfriend" to see him as well. so he had a very good day. he got to see a lot of people that he loves and misses. later he and i colored easter eggs. he seemed to enjoyed that. he was so careful and neat. he took his time and painted an egg his way. it is very pretty and he did it all on his own. i think he had a good time with the eggs. well i think that's it . i'll write on mon. or tues. he sees the ear, nose and throat dr. on mon. then on tues. his regular cancer dr. so i'll let you know how that goes. hopfully we will get his hearing aids soon. well gotta go, love ya tammy.

Thursday, March 17, 2005 11:21 PM CST

hi ya'll. happy st. patrick's day!!!!! yesterday, one year ago, we found out that bj has neuroblastoma. it is hard to believe that it's been a year. in a way it feels like it has been 5 years.....but at the same time it seems like only yesterday. so much has happened in the last year, that i can hardly remember it all. but i can. he has been through so much for someone so young. at duke i started a necklace, each bead on the necklace represents something that he has had to endure, ct scans, being on the vent, being admitted to the hospital everything. it was started by a family that had a girl that went through the bone marrow transplant unit. it is a reminder of all he has done and of that which has been done to him. when i look at it i am reminded of how strong and brave he is. some day i will put one last bead on his necklace, the bead that represents the end of this part of his life, the one that stands for him beating neuroblastoma. i will design that one myself because there isn't one yet, at least not that i know of. i feel it is important to have closure when the time for it comes. when he is older it will be the story that explains what has happened to him. the last bead will be the " happy ever after" part of the story. i don't think i will ever forget one thing that we have been through. the pain and the joy. i have only to look at him, he is my inspiration. he is also my faith. when i remember all that we have been through, i thank God for all the miricles He has given to my son and to me. He has surrounded us with people who care for us. those people prayed for us and cried with us. we have never been alone. God provided us with a lot of miricles, for that i thank Him. i also thank all those people who have touched our lives. some of them i have never meet, but i am glad they were with us. well now that i have written a book i'll go.love ya tammy

Thursday, March 17, 2005 11:21 PM CST

hi ya'll. happy st. patrick's day!!!!! yesterday, one year ago, we found out that bj has neuroblastoma. it is hard to believe that it's been a year. in a way it feels like it has been 5 years.....but at the same time it seems like only yesterday. so much has happened in the last year, that i can hardly remember it all. but i can. he has been through so much for someone so young. at duke i started a necklace, each bead on the necklace represents something that he has had to endure, ct scans, being on the vent, being admitted to the hospital everything. it was started by a family that had a girl that went through the bone marrow transplant unit. it is a reminder of all he has done and of that which has been done to him. when i look at it i am reminded of how strong and brave he is. some day i will put one last bead on his necklace, the bead that represents the end of this part of his life, the one that stands for him beating neuroblastoma. i will design that one myself because there isn't one yet, at least not that i know of. i feel it is important to have closure when the time for it comes. when he is older it will be the story that explains what has happened to him. the last bead will be the " happy ever after" part of the story. i don't think i will ever forget one thing that we have been through. the pain and the joy. i have only to look at him, he is my inspiration. he is also my faith. when i remember all that we have been through, i thank God for all the miricles He has given to my son and to me. He has surrounded us with people who care for us. those people prayed for us and cried with us. we have never been alone. God provided us with a lot of miricles, for that i thank Him. i also thank all those people who have touched our lives. some of them i have never meet, but i am glad they were with us. well now that i have written a book i'll go.love ya tammy

Wednesday, March 16, 2005 7:51 AM CST

hi ya'll. bj is doing well. he is eating us out of house and home.lol he has been on the accutane for about a week, the only side affect i have seen so far is he is more tired than usual. and a little grumpy. so far so good. we went to the dr. yesterday, and his labs were very good. someone from the school will come tomorrow and evaluate him, to see where he is and what he will need to catch up. he will have to see an ear s, nose, and throat dr. before he can get his hearing aids. we have an appt. to do that next week. so after that, hopfully, we will be able to get his h.a. well i guess that is about all i have for today. i'll write more later. love ya tam

Wednesday, March 9, 2005 10:55 PM CST

hi ya'll bj is doing very well. he is able to take the accutane pills no prob. at all. i also called about his hearing aids and they said it will be at least another two weeks. he is eating good and watched tv. he also likes to read, wel, we read he listens. he miss being around other kids. we figure in a few months, when flu season is over, we may be able to be more social. hopfully. he is getting stronger each day, his naps are not as long as they had been. sometimes he dosen't take one but then he wants to go to bed earlier. all in all he is doing well. so i'll go for now.love ya tammy

Tuesday, March 8, 2005 10:18 PM CST

hi ya'll. bj is doing ok. we saw dr.p. yesterday, and bj's labs were very good. we talked about the drug accutane. it is supposed to tell cancer cells ( which are immature cells that keep dividing ) to mature and stop dividing. they just hang out til they die and do no more harm. so i said i would try it. the idea is to keep the neuroblastoma from coming back. however, if there are any side affects, no matter how small i will stop giving the drug. after all if it is meant to be it will be and if not there is nothing that will stop it. it is and has always been in God's hands. well i'll go for now. love ya tammy

Saturday, March 5, 2005 11:36 PM CST

hi it's me again. we are doing very well. bj is eating well and watching lots of cartoons. he gets up and dances and sings with the characters. he and mamaw made cookies today. he and mamaw made lemon ade a few days ago, he really enjoyed that. he loves being home. he is starting to take an intrest in coloring. we colored in the big dinosaur book ( the one he has had for at least a year.) he has started doing stuff that we have waited for him to be able to do, last year he was to sick. now he seems to be catching up. i hope his hearing aids come in soon so he can start home school. i haven't started that yet because if he can't hear a teacher he will only get frustrated and cry. i figure there is no use in setting him up to fail, so we will wait til he can hear. soon i hope. well i'll go for now. love ya tammy

Wednesday, March 2, 2005 10:19 PM CST

well i'm back again. it seems that bj should not drink things with a lot of sugar. they have a tendancy to not stay down. snow cone syrup. he had some on his ice and it didn't agree with him. oh well now we know. that is the way of it, one never knows until they try, and then you know......the other cute thing he did .... he usually gets hungry before dinner so we feed him when he gets hungry. if we waited he would not eat. so he ate about 10-20 min. before dinner was ready. even though he ahd eaten he still set at the table with everyone else, it is time for dinner and that is a family thing. so we are eating and he is full mom asked if he was ok and he said " i'm fine i'm born" we think that means he is "bored" so i say you are bored? yes the next day the same thing he eats early and at dinner he tells us he is "born again" i thought it was very funny and had to share it with you. well gotta go see ya love ya tammy

Wednesday, March 2, 2005 3:18 PM CST

hi ya'll. bj is doing fine he loves setting on the big couch and watching the big t.v. we were supposed to get his hearing aids yesterday but my insurance dosen't pay anything on them so now we are waiting on medicaid. not sure when we will get them but hopfully soon.well bj just got sick so i'll go bye

Sunday, February 27, 2005 0:05 AM CST

hi ya'll. we are doing well. bj is eating better and we should be able to go get his hearing aides on tues. he has started to sing with the charactures on t.v. when dora sings he does to. that is something new for him. he got to play outside today, the temp was almost up to 50. he was glad to be out even in the mask and all. we go mon to check labs. oh, and he started drinking those yogart drinks, he drank 9oz. todayplus all the stuff he has been eating, thank God for megace (the appitite stimulator). he seems to be getting some of his energy back, even though he still takes a nap about midday. he stays up and active longer. hopfully we can get home school next week or the week after. i'll call them after we get his hearing aides. well i hope i talked about it all. i know i tend to ramble, i'mm trying not to froget anything. and to make sure that i hit all the high points. i guess i did, so i'll go for now. love ya tammy

Friday, February 25, 2005 0:07 AM CST

hi guys not much to trll. we saw dr today and bj's labs were good he is doin well dr decreased the fluids from 500 to 250cc. and lowered the predinsome, ( did i tell you i can't spell)lol well that's about it he is laughing and playing and glad to be home. i'll write more in a day or two. love ya tammy

Tuesday, February 22, 2005 10:22 PM CST

hi guys. we went to get bj fitted for hearing aids today. it went well. they said that they should be in next week. he also started the fluids today. by using just fluids instead of the tpn( iv nutrition,) his appitite should increase. we will know in a few days. bj is doing well, today was a catch up day. we rested more today. i think with comming home and everything we needed a day to catch up. well i'll go for now. love ya tammy

Monday, February 21, 2005 11:04 PM CST

hi ya'll. we are well and hoping you are too. today we went to see bj's dr. up here. it went very well. his labs were very good and dr. stopped the i.v. nutrition. bj will be getting some extra fluids by i.v. because he isn't taking in enough on his own, but that is o.k. he just needs a little help. we won't see dr. til thurs. bj also gained a lb. over the weekend. tomorrow he will be fitted for his hearing aids. they should be in next week. well i guess that's all for now. i'll see ya later love ya tammy

Sunday, February 20, 2005 10:07 PM CST

hi guys. we are really enjoying being home. bj is eating very well. he eats all day long. we hope to see his dr. ( hunnington) tomorrow. i should know more about the plan then. he has gotten lots of late christmas presents since we have been home. right now he is watching tv on a new spoungebob tv. he is enjoying all the new toys. we thank you for them. it is good to see him smile and laugh. he seems to be feeling very good. his mood has improved 100% since we got home. well i'll go for now. love ya tammy

Saturday, February 19, 2005 10:14 PM CST

hi ya'll! we are home!!!!!! we came in last night. we are so glad to be home. bj kept saying how he just loved it here. when we got to the driveway he said " we not go to the apt" lol he is doing very well. he ate gravy and toast this morn. and has eaten all day long. he is back on i.v. nutrition. it is a small amount and it will help him to keep from being dehydrated while he gets his appitite back. well he is ready to go to bed so i will go for now. i'll write more later. love ya tammy

Thursday, February 17, 2005 9:22 PM CST

well bj and i spent most of our day in clinic, waiting to see his dr. we never did see his dr. but i did talk to him on the phone. we will try to get with him tomorrow am. then we are coming home!!!!!we plan to leave by noon at the latest. so we will see ya soon. love ya tammy

Thursday, February 17, 2005 9:22 PM CST

well bj and i spent most of our day in clinic, waiting to see his dr. we never did see his dr. but i did talk to him on the phone. we will try to get with him tomorrow am. then we are coming home!!!!!we plan to leave by noon at the latest. so we will see ya soon. love ya tammy

Wednesday, February 16, 2005 10:57 PM CST

today was a long day. so i'll be breif. i hope to have more time tomorrow. the short version is bj and i spent the better part of today in clinic. his chest x-ray was good. his labs were slightly off so they gave him smoe fluid and potassium. this fixed it. we are coming home on fri. come hell or high water we will spend fri night in wv. anyway i'll write more tomorrow. love ya tammy

Tuesday, February 15, 2005 7:59 PM CST

hi bj is feeling better. we still don'tknow when we will be able to come home. the dr. wants to do a chest x-ray and some lab work tomorrow. maybe we will find out then. the good news is i now have access to a computer!!!! I will be able to write more and send e-mail. well back to bj, he went on a long ride in his "big green machine" mamaw and pa took him on a long walk in the woods behind the apt. the weather was warm and he had a good time. right now he is watching tv. i think he's ready to go home, but ewe will have to see what his dr. says. well i'll go for now, i 'll keep in touch better now that i have this laptop. love ya tammy

Wednesday, February 9, 2005 11:02 PM CST

hey, well i'm back again! LOL BJ is still doing great!! He was able to go outside and play a couple of times today, unlike us THEY are having great weather in NC, Tammy took him to the creek and let him throw rocks in the water, he loved it! He went to clinic today and everything looked good-didn't have to have bld. or platlets! He isn't having to go to clinic everyday now, I think he goes Mon, Wed, Fri. I'm sure they are all glad of that, sometimes you can spend the whole day there just waiting to see if you need anything! He is starting to eat a little more, yesterday he ate almost a whole piece of toast---YEA, "GO BJ" Mamaw/Pap sure do miss you! Hopefully they will all be home real soon! One day at a time, Tammy isn't getting her hopes built up, they've been within "1" day before! They will see the Dr. on Friday------SO hopefully it will be GOOD NEWS!!! Look out West Virginia!!!!!!! keep Praying! Love ya all, Luwana

Thursday, February 3, 2005 4:38 PM CST

Hi guys, Tammy has no way to update right now, so I thought I'd just let you know that things are still going great! Nothing new to report right now-which is a good thing! Lets just hope he keeps improving so they can get home!!!!!!
Luwana(mamaw)

Wednesday, January 26, 2005 9:56 PM CST

hi ya'll bj is doing well. he is drinking about a can and a half of boost breeze ( it's a nutricional drink like ensure.)a day. he is walking in the halls. the dr. said he wanted to keep him in the hospital til mon. because they are not sure what caused him to go on the vent. he wants to watch him to make sure he's ok before sending him to the apt. they have tested blood and took cultures but nothing they do to find an answer has shed any light on why he went into respiratory failure twice. it could have been an infection or a reaction to the blood products or a hundred different things. anyway, we are glad that he is better, and continues to get stronger every day. if he keeps improving with eating they may not have to remove his gallbladder. when the digestive tract is moving food through it will sometimes correct the issues that he is haveing. wwell i think i wrote about everything. i hope to write more later. love ya tammy

Monday, January 24, 2005 2:41 AM CST

hi ya'll we are doing much better. he has been wlking in the halls and flirting with the nurses. he is back on the planet earth, and back to his self. as i said he is doing well. he was able to open a few presents and play with toys yesterday and today. i can see him getting stronger every day. sstill no word on coming home but maybe they'll tell me something tomorrow. i'll let you all know when i hear something. well i gotta get back to bj i love ya'll and miss ya. tammy

Saturday, January 22, 2005 1:42 AM CST

hi ya'll. sorry i havn't written in a few, bj has been doing well. e has been on a medication trip. by that i mean that he has been on another planet due to the meds. he has been real pacey and just not himself. but i think he is on his way back. he is starting to act like himself. i think next week they will start talking about doing his surgery on his gall bladder. we will have to see. well i gotta go love ya . tammy

Tuesday, January 18, 2005 10:33 PM CST

well i am back. the good news is .... he's off the vent and doing very well. he is still very weak but he is tallking to us and smileing. we will stay in picu for 24 hr. then move to either 5200 ( the transplant floor.) or to 5100 ( reg. rooms ) either way we will be in house for a week or more. the dr.s have to fix the gallbladder, then we can go home. then maybe we can go to wv. if not i'll just buy a house and stay (hahahahaha). we are all doing better now that he is doing better. we would like to thank everyone for your thoughts an dprayers, and for keeping in touch with us it means a lot hearing from everyone. it means we are not alone and gives us something to look forward to . we love ya.
love t&b

Monday, January 17, 2005 11:41 PM CST

hi ya'll the good news is that they will try to wean bj off of the vent tomorrow. i think he will tolerate it well. if so he ccan go to a room off of the icu. so we are closer to the apt. and home. maybe in a week or so they will be able to fix his gallbladder and he will feel much better. i figure we will be here about a month or so longer, but i still don't know for sure. anyway we miss you and can't wait to get home. we love ya'll. tammy

Saturday, January 15, 2005 11:21 PM CST

well here we are, it's his birthday and he is til on the vent. the good news is they have been able to wean him off of vent a little. hopfully in a day or two he'll be off of the vent completely. today was rough for us because it's his birthday so i'll go and write more tomorrow. love ya tammy

Thursday, January 13, 2005 11:43 PM CST

it's me again. the dr.s now think bj had a reaction to the blood he got. after recieving blood so often sometimes people will react to antibodies in the blood they get from donors. so it may not be an infection. the other good news is that they are weaning him from the vent, and it is going well. dr. hopes to have him off of it this week end. his birthday is the 15th so i am hoping they get him off of it by then. it would suck to be on a vent on your 4th birthday. well we will keep praying nd we thank you all out there. we love ya . tammy

Wednesday, January 12, 2005 10:40 PM CST

just a short note to say it isn't going to well, bj is on the vent. he has an infection in his lungs but none of the cultures have shown anything. it is very simular to the last time this happened. we are staying with him in shifts again. mom and frank 8-4 me 4-12 and dad and luwana 12- 8. i just wanted to let you all know what is happening so now that i have i'll go. i'll try to write more tomorrow. love ya'll. tammy

Monday, January 10, 2005 6:34 PM CST

hi ya'll we are back in the hospital. bj has fluid in his lungs that may or may not be pneumonia. he also has gall stones and will have to have his gllbladder removed. so we will be here for at least another week or two. i am to the point where i won't believe we are going home until i see the welcome sign that says now entering w v. haha. we have been here so long we are looking for a house to buy hahaha...... eventually they have to let us go. in all honesty, this is the best place for us to be. at home we just don't have the stuff to take care of bj the way they do down here. after all this is a childrens hospital, the part we are in deals with and has the facillities to deal with kids who have cancer. at home we just don't have all that . this is not to say that the big hosp. is better, but they have more toys... i mean tools haha. well i will write more later. love ya, love tammy

Tuesday, January 4, 2005 10:14 PM CST

hi guys, Tammy said BJ was feeling better today-has only vomited x1 today and his b/p was normal!!!! That is great news! He did have to have platlets this morning. Still going to clinic everyday! Dr. says maybe this weekend they can come HOME!!!!!!!!! We of course know better than to get our hopes up, we'll take it when the day comes and the Dr. says Get outta here and head HOME!! We Love you all, con't to pray for Tammy/BJ and the whole family! Love ya, Luwana

Friday, December 31, 2004 5:52 AM CST

Hi everybody!!! Hope you all have a very HAPPY NEW YEAR!! This has been a very long and trying past year for all of us, lots of bumps in the road! We can only hope that the new year will bring wonderful things to this family! Tammy and Bj along with all of the family deserve a break, I know if Tammy could just get a normal routine it would be wonderful for her! As you all probably know by now, BJ didn't make it home for the holidays(W.Va). He did get back to the apt. though and Santa did find him and brought him lots of neat stuff! he musta been a very good boy this year! I hear that Bj was worried about how santa was going to get down the chimney! LOL, But guess what??? he made it!
They are still having to take him into the clinic on a daily basis just to be checked! He has been getting bld. and platlets alot lately. His b/p has also been up a little and also retaining fld. to treat this they are giving him IV lasix which takes care of the fld. and also the b/p! Tammy says he is again trying to eat a little along the way! OMG, I just can't wait to get them home!!!!! We didn't get down there on Christmas and we're not going to make it for the new year either-hopefully he will be home in the next few weeks!!! He has a birthday in january, and hopefully he will be here for a BIG OLE PARTY!!! he won't be able to have alot of visitors BUT it don't take alot of people to have a BIG party, I'm a big party all by myself!!! LOL We're party buddies! We love to dance and play when he is up to it! Can't wait to wrap my arms around his little neck and dance til we can't dance any more!!! It just tears our hearts out not to get to see them every week, we all miss him so bad we can't hardly stand it! You guys just keep praying that they will make it home real soon---Dr. is on vacation, so that don't help any!! LOL Love you all for everything you do for Tammy and BJ!!!
Luwana
P.S. I guess you figured it out that Tammy can't get to puter again!!

Sunday, December 19, 2004 3:09 PM CST

hi ya'll. we have had a busy day. my dad and mom (step) came in as a surprise yesterday, and stayed til about 3:30 today. and some of the guys from school came down this morning. they brought bj alot of nice gifts. we had breakfast, and talked a lot. they are really the best brothers anyone could ever have . they have treated us like family. if you guys read this you are the most upstanding gentlemen and i love you . any way they left around 1:00 ish. it had started to snow back home and they need to get back before it got bad. we had a good time with them. bj is feeling a good deal better so they were able to play. he smiled and laughed. it was good to see him smile. well i should go. i love ya'll tammy

Friday, December 17, 2004 11:33 PM CST

hi ya'll. we are still at the "dr.'s house" as bj puts it. we expect to be here through the week end. he drank some apple juice, about 4 oz. and hasn't thrown up since last night. dr.s are maintaining his blood pressure with drugs and he still needs blow by o2. so i would say that he is a little better but only a little. none of the cultures have come back yet so we are not for sure what it is . and his chest x-rays looked better today than yesterday. i'm not sure we will be home for christmas, but taht's ok it will be christmas where ever we are. well i am going to go. i'll talk to you later. love ya tammy

Friday, December 17, 2004 0:11 AM CST

hi again it's me. bj was admitted ladt night. his dr. thinks it could be a bacterial infection. we will have to wait until the cultures grow to find out for sure. he has been throwing up some and his blood presssure has been low which alo makes his pso2 ( the oxygen level in his blood ) low . to fix that he has hd o2 and some drugs that help to raise his blood pressure.
now that we are nearing the end of his treatment, we are better able to tell what some of the affects it has had on his body. most noticably will be the loss of hearing due to the chemo drugs. he will have to have hearing aids. we will keep testing his hearing periodicly to see wheather it will get worse with time or better. it is to early to tell, it may be a long time before we know what the full affect will be. the other thing is the radiation has damaged the top 1/4 to 1/2 of his kidney. this is a concern but people live very well with only one kidney. the remaining kidney will compensate for the damaged part. since the kidney is so close to the spine they had to irradiate 5 of his vertabra. this means that those vertabra will not grow any more. the up side is at 4 years old our vertabra are only 1-2 cm. smaller than an adult's vertabra. this will only cause him to be short waisted. our height is from the femur bone not the spine. he will still be ble to play sports if he wants to . however he may have to wear kidney protection for full contact sports. mostly to remind him to prottect his kidney. so far this is what we know has been damaged by this treatment. time willl telll. i know that this seems like alot but what we have gained i feel greatly out weights what we lost. some other day i willl set down and tell you all about what we have gained. it is more than just treatment it is hope and lots of other stuff that i am just to tired to tell you about tonight . but another day i promise i will tell yyou alll about it . i truly do have an amazing story to tell you. but it must wait untill i have rested. i love ya'll . i thank God for all of you everyday. love ya tammy

Wednesday, December 15, 2004 11:55 PM CST

hi ya'll this is the first time i've had a chance to update since we got out of hospital. bj finished his radation on tuesday. that made him pretty sick. lots of throwing up and abdominal pain. this eve. he spicked a temp. so we came in ( to hospital ) to get it checked out. not long after we got here it started to go down. so we'll see what his labs look like.
well i should go. i just wanted to type a little while i had the chance, the opportunity dosen't come round to often any more. however, when we get back to wv i'll have my computer, so i'll be able to update more often. we'll see ya soon love tammy

Wednesday, December 15, 2004 8:52 AM CST

Hi everybody, well we went to see Tammy and BJ last weekend, BJ wasn't doing very well, he is having alot of nausea, he isn't eating so its really just dry heaves! He wasn't even able to set up, all he did was lay around in the bed or on the couch, just really didn't feel like being bothered. He is having alot of abdominal pain also. It just broke my heart to see him like that, his big bright blue eyes and big ole giggles where just not there, he was just a very miserable little boy! The social worker called to tell Tammy that the Hendricks pit crew was going to be at the clinic on sat. and really would like to see BJ, he needed to go anyway so we bundled him all up and took him over and he was really glad to see them---or maybe it was all the presents they brought him---LOL But he just couldn't enjoy it, he was just feeling to bad, he did open all the presents though, he LOVES presents! We appreciate all they do for these kids, they are a great bunch of people! They have been through so much as a team family and they still made the time for these kids!! They are the best and we have so much respect for what they do, you can just tell that they really enjoy making these kids smile. The last time they were there they couldn't get away from BJ, he about wore them out, he laughed and giggled and played with them, everytime they passed the door he would yell out for them to come back--and they did several times!
Well,the really good news is----BJ will be HOME on FRIDAY!!!!!!!!!!!!!!If nothing else happens and he is up to the trip! So lets all cross our fingers and send up that extra lil prayer today!! we love you all, Luwana

Wednesday, December 8, 2004 9:47 AM CST

Hi everybody, hope you are all getting ready for SANTA!
BJ has been feeling bad for a few days, the Dr. made some med changes and Tammy says he is feeling better now, still not eating though! He is still having the radiation treatments----7 down and 5 to go!!! Before they started the tx. he had to have a CT scan to pinpoint the area, it was very close to the spine and they hoped not to hit it, but they did, the good news is that they hit the whole area(lower portion) of spinal column and not just part of it, I,m not sure how much of it was affected but the Dr. said it would just basically make him short waisted because that part of the spine won't grow, they said it was better to hit the whole thing so that as he grew it wouldn't cause as much trouble, I hope i'm getting this info right--if not-please forgive me. They're is just so much to take in and sometimes when we get it over the phone we do get mixed up! But the main thing is that BJ and Tammy are doing well for what they have gone through!!! They will be home on the 21st!!!I know BJ can't wait to get home to all his toys!! We're going to see them tomorrow so we'll know more when we get back and I'll let you know, AND I'm sure i'll have new pics!!!! LOL We love ya all, Luwana(BJ.Tammy) I printed all this stuff on here out and mailed everything to her so she could read your entries!!! She loves you all so much and misses you too!She has such good friends!

Saturday, November 27, 2004 11:09 PM CST

Hi guys, I'm having trouble updating this week, i wrote a big ole entry last night BUT it wouldn't post it??!! LOL Well, anyway BJ/Tammy are doing pretty good, they have to be the "2" most amazing people I know, BJ is a fighter and Tammy is a rock, she just holds it all together and gets it done---no matter what it is! She doesn't hesitate letting anybody know when she things they are wrong about BJs tx. or whatever, she is his advocate!! Somebody has to do it and i can't think of anyone who could do it better than she is. BJ is starting to eat bites of lil stuff, but he hasn't eaten since middle of sept. so i.m sure it will take awhile for him to find the right thing to wake up them tastebuds----but then lookout!! he'll eat them outta house and home~~~and that would be wonderful!!!!!!!!!He atarts his radaition on monday at 8am-the big #1, and "11" more to go this is all that stands between him and west virginia!!!!!! OMG-I'm so excited i can't stand! They need to be home with the family and friends that have missed them all this time!! Keep praying that there will be no complications and he will get here on schedule!!! Don't want santa to have to hunt him down! God has to know what special "2" people everyone is praying for and how very speciail they are to everybody !!!! We love you and lets start the coundown on monday !!It will be 5 days a week for 2 weeks then only 2 left on mon/tues of the last week!!!! can't wait!! Love you all, Luwana

Saturday, November 13, 2004 10:04 PM CST

Hi,this is Bjs mamaw yet again!!! LOL Tammy has no way to get to the puter yet, so i'll let ya know what i know. I just called and talked to Hilda---AND BJ!! Made my day, he sounds so good, he says he is doing petty good, it sounds so cute when he says it. She said he ate a little bit of chicken noodle soup, the end of a few french fries after dipping in ketsup of course, and was starting to drink a little bit, SO things are looking up! He is having to go the clinic everyday and just kinda set and wait to see if they need to do anything, she is drawing his blood at home and taking it over to the clinic between 7-9am, then he has to go and WAIT!! He will be having a CT scan and while he is out for that they will go ahead and make the body cast so he can get started on his radiation, they have to make the cast so that every time he has a treatment he will be in the exact position as before so they can tell where to treat.If all goes as planned he will be HOME for Christmas! Keep the prayers going up!!!!!!! Love ya all, Luwana

Thursday, November 11, 2004 12:31 AM CST

Hi, this is BJs mamaw again---with GREAT news!!!! BJ went home(appt) today!! I talked to him last night on the phone and he was so excited! Of course he still has a long way to go. He will have appointments EVERYday at the day clinic, Tammy was told to bring snacks and stuff to kill time because they will be there ALL day! I'm sure BJ won't like that part but at least he can go back to the appt and sleep in his bed and play with all of his toys etc....which will be great for all of them, i can't wait til they can all get back to some sort of routine in their lives that doesn't include the word hospital every day! BJ and Tammy are both such strong people, I don't know that i could have gone through what all they have and still be sane! I'm sure they will have to spend Thanksgiving down there, BJ will still have to go through his radiation after all this other stuff so everybody just pray that he will get back home to WV in time for Santa to come see him!!!!Thanks to everybody who has asked GOD to take care of our boy, he con't to listen and answer our prayers!!This website is the neatest thing, even though Tammy can't get to it and read it everyday it will be here when she can get to it and she can then print it out and add it to BJs memory box! She appreciates you all so much! Love ya all, BJs family

Saturday, November 6, 2004 10:44 PM CST

this is BJs mamaw wana again! Just want everyone to know BJ is doing SO much better,he is off the pain meds now, just getting them on "as needed basis", he was going through some pretty bad withdrawl so they started him on methadone to help him come off them, and so far so good!!! they cut his oxygen down early today---then later came in and turned it off and he is doing great with that, only he doesn't know that he isn't getting it, he is afraid to take the tube out of his nose, kinda like a security thing. They will work on getting him to take the cannula off later. The Dr. thinks he may get to go(home) to the appt. in a few days!!! If he con't to do as well as he is right now!He still isn't eating but hopefully his appetite will return soon, he did try a few bites of different things today, BUT they just didn't taste good, at least he is trying!!
Tammy appreciates all of you guys and your thoughts and prayers. She got to spend some time shopping and just hanging out with steph last week, she really enjoyed having her there, and i might add --so did BJ! He is taking walks now twice a day, getting stronger everyday! We all are so proud of him and his mommy, they are just like the ever ready bunny "keep going and going" Con't to pray for them "GOD is listening and answering" BJ is our miracle boy!!!

Wednesday, November 3, 2004 3:43 PM CST

Hi guys, i don't know what is going on with this site---but i've tried "3" times today and can't it to work, so "1" more time! Short and Sweet, Bj is doing a little better, cut back on pain meds and also TPN(nutrition) and he is able to take a few bites of food mostly popcicles, he is still on oxygen and unable to do without it at this point, hopefully from the reports---he is getting a little better everyday!!! This is mamaw wana and we're going down this weekend so we'll know more when we get there and hopefully we can get it on here for you. Steph is home from Japan so hopefully Tammy is able to spend some good quality time with her and take a little off her mind even if for a few hours at a time---she deserves it!! Con't to keep us in your thoughts and prayers!!! we love you all

Tuesday, October 26, 2004 9:07 PM CDT

Hi, just checked on BJ a little while ago, Frank said he is doing better, said he took a few steps last night and got up and got weighed today--so the good news is he is getting stronger! He says he has a pocket of fluid on his chest and was thinking they might have to drain it or something but after calling in all kinds of specialist and x-rays and everything they could think of---the drs. said they had never seen anything like it before---which is our lil guy for you, he has always done the unexpected or things that nobody has ever seen, he makes these guys scratch thier heads alot to figure out what is going on with him!!! Anyway they decided to watch it, and hopefully it will take care of itself! Thank you all for checking on Tammy and Bj and keeping them in your prayers!

Sunday, October 24, 2004 9:50 PM CDT

Hi everybody, this is BJs mamaw,(Luwana) Tammy is having trouble getting on the puter and also hard to find the time so i told her i would try updating for her. As you know BJ was on the ventilator,He was on it for almost a week and he was weaned off that on sat. and the tube was taken out, also the catheter was removed which made him a very happy lil boy---he hates that! He is peeing good, and he now has his oxygen per nasal cannula and is doing pretty good with that, he is doing deep breathing and also tammy is doing percussion on his chest to keep that stuff loose in his lungs. We just got home(ky) from there and we called and she said he had set up in the chair for awhile this eve---that is great. Nobody knows just how tuff this lil guy is, he has been through so much and he just snaps right back, such a fighter! He has so many people pulling for him-we appreciate all of you so much, it means so much to Tammy to get on here and see just how many do care! She has to be the strongest mom in the world, she should have crumbled along time ago, BUT not tammy she does what she knows she has to do!!!! Together that mom and baby can get it done!!!!!!!!!! We love them both so very much. Just keep praying for them!

Wednesday, October 20, 2004 9:36 PM CDT

well, bj is stillcritical but stable. he is still on the ventbut doing well. they did a bronchoscopy and a ct scan, both showed very little. by this i mean there is not much in his lungs. this rules out some stuff that it could have been. during the bronch they were able to get a sample to culture. this takes time to grow. the dr. said he didn't see much mucous but there was some. basically that means that they still have to wait for the cultures to grow. he is sedated but at times will wake up some he is not in any pain. he looks around but doesn't really see. his eyes look as if he is in a drug induced haze. this is a good thing because he is not afraid. he is in lala land. a happy place. he is able to move a little. he raises his arms and trys to sit up. i think that means he is still strong and still got a lot of fight left in him. right now his body just needs to rest and let the machine do the work. he is most diffently the toughest kid i have ever seen if i do say so myself. ( well, i am his mother....hahaha). well i gotta go thanks for your thoughts an d prayers.. i also appreciate the messages that ya'll have left. it gives me strength to hear from everyone. we love ya'll . love tammy

Tuesday, October 19, 2004 11:38 PM CDT

hi how ya'll doin?bj is doing better. he has been put on the "other" vent. it allows him to breath more on his own. he is tolerating that quite well. his lab values are better. and able to wake up a little. he is still mostly sedated because of the cath in his pee pee. we are still working on weaning him off of the vent but it will take a few more days. well gotta go. love ya tammy

Monday, October 18, 2004 0:34 AM CDT

well, the bad news is bj is in picu, and on a vent. the good news is he is sedated and doesn't know it. the dr.s are still not sure what it is but they have covered all bases. only time will tell. i'll try to get back to you soon. love ya'll!!! love tammy

Friday, October 15, 2004 11:15 PM CDT

hi ya'll. bj has pneumonia, they think. the x-ray shows fluid in his lungs, but the test for infection hasn't shown anything yet, ( the samples have to grow for a day or two ). he is on every antibiotic and antifungal none to man. the dr.s have covered every base, if it is posible to get , they have given him something to kill it. right now he has a bypap machine to help his breathing to be easier. it forces air in so that he doean't have as hard a time breathing. it is not a vent, it just makes it easier for him . with the fluid in his lungs, his body has to work hard to get enough oxygen, the by-pap makes it so that his body doesn't have to work so hard. anyway he is better tonight than he was this morning..in a few days i expect him to feel lot better. it will take a few days for the drugs to do their thing. time is what it wwill take. so i'll write more when i can . love ya'll tammy

Monday, October 11, 2004 11:32 PM CDT

long time no type....haha... we have had a small problem. his phersis cath ( the iv line in his chest) had a small hole and had to be replaced. they did it today. he did really good had a lot of platlets to control the bleeding. surgeon said he didn't have any trouble at all. he is in his room and hooked up to his pain med. doing well ...... i'll go for now, try to write more tomorrow. lots a love tammy

Thursday, October 7, 2004 11:56 AM CDT

hi guys i got really good news. bj's white blood count (wbc) is 1.6. it is still very low, but considering that it was less than .1 for so long this is great news. he feels better to. he was awake a lot more yesterday. because the wbc is coming up, he is having tummy pain. the lining of his tummy is inflammed, the white blood cells go there to try to heal that area. this causes the tummy to be sore and painful. but hot packs and pain meds. help. he is not throwing up like he was a few days ago. so i must say i think that he is doing much better. well gotta go, my typing is really bad and takes a long time ...haha!!! well i'll try to write more later. love ya tammy

Tuesday, October 5, 2004 7:28 PM CDT

hi ya'll sorry i haven't updated lately. bj is feeling better his white blood count is up to 0.1 that is 100 soldiers he needs a lot more. but it is just starting to come up. in a few days it should jump up by leaps and bounds. this means that he feels better and requires more attention. at the same time he still has sores in his mouth and digestive tract. these cause him quite a bit of pain, however we have increased his pain meds. to compensate. overall, we are doing well. he may get to go back to the apt. next week. then we will start out patient visits. well i gotta go love ya & miss ya, tammy

Saturday, October 2, 2004 5:10 PM CDT

hi ya'll how is it goin? i am so glad ya'll have been able to get to here. it does my heart good to read alll the messages you have left for us.. it really brightens my day. thank you sooo much. bj is donig a little better. the meds. make him sleep alot, but he was able to get up and walk today, without his iv pole ( the nurse took him off of it long enough to walk up and down the hall). he does better that way. the pole is like having a leash on, and limits his movement. so that was good! the dr. says that around tues. he should feel a lot better. his white blood count should start to come up and when it does it climbs fast and hard. i have seen it double overnight. it is amazing when this happens. he should feel a lot better when that happens. well i gotta go i miss ya'll, and will write more later. love ya, tammy

Thursday, September 30, 2004 2:44 PM CDT

higuys. he is still having pain but the meds. are working. dr. says he could get to come home if he keeps doing as well as he is now. even though he is in pain and throwing up it is to be expected and we are able to give him meds. to make him comfortable. so far so good. well i'll try to write more later. p.s. i'm still working on getting the pic. on the page. love ya tammy.

Wednesday, September 29, 2004 8:48 AM CDT

bj is five days passed transplant. he is having moderate pain, his mouth has sores, which is very painful. he hasn't had anything to eat in 9 or 10 days. he is getting iv nutrition to maintain his body. dr. says he is doing as well as expected. we expect that he won't be eating and that he will have sores in his mouth , however dr. also says that he should start to feel better in 5 or 6 days. so i guess we are at the mid way point.

Monday, September 27, 2004 6:34 PM CDT

hi ya'll. sorry it has taken so long to get back to you, bj has been throwing up and in some pain. however, he has been given drugs to keep him from throwing up& pain meds. we have had to double the pain med twice so far. his body adjusts to it quickly and the pain increases fast as well. i think we have it under control for now. he is sleeping alot but when he is up he is able to play. he had a bath a few min. ago and i think that helps him to feel better. his tail is a little raw and itchy from lots of poop, so the cream and a warm bath helps that.. mom and frank and i are trying to take turns so that we don't get to worn out, so far that is working out pretty well. the nights are the hardest time cause it is so long til morning. it is hard to get away to update this cause it's hard to leave him alone, but if one is here by themselves.... well hopfully by taking turns i'll be able to update more often. well i guess i should go i'll try to write more late. thanks for checking up on us, and for your thoughts and prayers. love ya tammy

Friday, September 24, 2004 0:48 AM CDT

hi ya'll!!!! i finally got this thing workin'!!!ha!!! bj is asleep he threw up a little and had some phinagrin and benadryal, so he should be out for a while... up front i'll tell you i can't type, spell or work this "stupid" computer, so bear with me we'll get through this too. i'll write more tomorrow, i need to check on the little man and it's late so i'll see ya later love ya tammy.

Friday, September 24, 2004 0:39 AM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----