Journal History

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Monday, March 20, 2006 10:22 PM CST

This is just a note to let everyone know that things are great with Tyler. We've had our issues with anxiety and with ADHD and we are still dealing with those. He was able to see Dr Wall when she came to Little Rock this month so he's yearly visit is already over. It's coming up on 4 years since his transplant!! April 23rd is the day. We are looking forward to celebrating his 11th birthday on April 21st.......thank you, Lord. Thanks for checking in......hoping to get new pictures up right away!

Sunday, September 18, 2005 6:35 PM CDT

Tyler is now in the 4th grade and loving it. It's been a busy summer with Dr's visits and dental visits etc but we are at the end of those. He has grown probably 4 inches and he's looking like a young man now. I will update the picture in a day or so.
We went to Padre Island this summer on our way to San Antonio for his yearly check up. The boys had a great time, in the sand or the water ALL day long. If not the ocean, then the pool. His check up went great, the testing showed 100% graft. It was great to see everyone in San Antonio too!
Tyler will be having some minor surgery that is unrelated to his treatment in the next few months. Please keep him in your prayers. Otherwise, we keep in mind how blessed we are and continue to thank God. Thanks for visiting, and I will promise to update more often!!

Tuesday, February 1, 2005 4:45 PM CST

It's hard to believe that it's been so long since I wrote the last journal entry! But it's only because things are going so well for us. Tyler is now in 3rd grade and doing great. He loves school! We will be going down to San Antonio for his 3 year check up in April! Who believes it's been that long?! We are very blessed. Everyone else is well, Marc is now taller than me and reminds me of that fact every other day! Thanks for stopping by, please sign the guestbook.........Tyler says "hi"!

Monday, April 26, 2004 10:24 PM CDT

April has been a busy month! We had a big birthday party for Tyler on Sunday the 18th. Tyler had a blast, all the presents, the games, the ice cream! Then on Thursday we flew to San Antonio to see Dr Wall. It was great to see everyone. We talked to several families who were in the process of transplant and another who will be going down for their transplant in a month or so. It was good for them to see Tyler and to see for themselves how well he looks and that they too will be feeling better soon and get to go on with their lives. Tyler was feeling nervous, he really doesn't like to visit any hospital much less San Antonio. The only real demand he made was that we NOT stay at the hotel we stayed in for 4 months while we were there. That's no problem! I don't want to go there either!
We should be getting blood work results back soon. We expect everything to be fine and we are hoping for 100onor! Thanks to everyone who are still thinking of us, we appreciate it so much. We couldn't be better...

Sunday December 28th, 2003

Merry Christmas! We hope your holidays are wonderful, ours have been. Tyler is doing great. He had a check up at ACH December 16th and everything was wonderful. We had Tyler on medication for ADHD but it depressed his appetite so much that he lost 5 pounds and he does not have that to lose. So, I took him off the medication and his appetite is back. That is most important, we will deal with the rest another way. Marc is great as well. He is enjoying playing the trumpet in the band. He and Braden got guitars this Christmas so there will be alot more music around the house now!
This is a short update I know, but things are really going well and there's not alot to report. I have been thinking alot these days about all those people who helped Tyler over the years and our thoughts are with those who are going through what we've been through already. God has blessed us and we are very concious of that fact. Thank you all for your help and support! We are eternally grateful!

Tuesday, July 8, 2003 3:44 PM CDT

Tyler continues to do great! Because of the transplant Tyler has to get his immunizations over again, he had the first one about 10 days ago. It was pretty traumatic but we used Emla cream to numb the area for the shot. He only had a very small localized reaction on his arm, that was it. What a relief!! He is really enjoying his summer....he wants to be in the pool all of the time! I have been trying to catch him up somewhat in reading and spelling for school this fall but it's hard, he'd rather be playing of course. We will be holding him back in the 2nd grade, he is so far behind. I think he will be just fine with it, he's going to a different school this fall and no one will know. I am just glad that he is able to go to school and resume a normal life.........we are so thankful!!!!!!
Marc is doing great also. Baseball is over so he's really looking forward to FOOTBALL!!! He can't wait. He is now as tall as me and weighs 170 lbs. He's gonna be (is) a BIG BOY. Thanks for checking in on us, be sure and drop us a line in the guestbook.

Tuesday, May 27, 2003 11:33 PM CDT

We recieved word the other day-- Tyler's bloodwork came back 100% donor!! YEAHHHHHHHHHHHHH!! That means that the cells DNA tested 100% from the donor marrow, none from his old marrow. All other bloodwork was normal also! We are so fortunate in many ways! Ty doesn't have a doctors appt until June 17th, way to go!!

Friday, May 2, 2003 2:39 PM CDT

Tyler's one year check up in San Antonio was April 24th. We drove down the 23rd and spent the nite. It was good to see everyone! We were really excited that several of the nurses that took care of Tyler were working that day. They were amazed at how well he was looking and how tall he has gotten. It will be another week or so before we get the blood work results back. Pray for 100onor results!! We were in clinic only for a couple of hours. Now that his central line is gone he had to be stuck to draw the blood so this was traumatic, it was the first time since he's had his line! But, Nurse Debbie put Emla creme on his arm so that made it alot easier to take, thank you Debbie!!
After the clinic visit we went to Sea World but it was closed. That week they were only open Friday, Sat and Sunday, so we took off and headed for Galveston. We had wanted to go to South Padre Island but it's quite the drive so we opted for a shorter drive home. The boys had a blast! They were on the boogey boards for hours on end. Tyler liked the hotel pool best though. That probably should be expected after all those months of being warned to stay away from dirty stuff and keep clean! He was so excited to be able to swim again and go under water. He also appreciates taking a shower so much more now!! I am so happy that we had the line removed before the trip....
We had a great trip all in all. The boys really enjoyed the ferry ride when we were leaving Galveston also. It was short but they thought it was cool.
Tyler started back to school today. He went to his regular classroom from 10 to 1:30pm. The kids were so glad to see him. I was alittle worried about him being overwhelmed but when I picked him up he wanted to know if he can stay longer on Monday! It's very exciting to have him back to even more normal activities!
Baseball is in full swing. Marc and Tyler are both playing, sometimes at the same time. Tyler plays for the Fayetteville Firefighters Team and Marc plays for State Farm Insurance. Tyler's team had their pictures taken with the Fire truck so that was very exciting. He has learned or I should say is learning to hit off the pitching machine. He's doing pretty well. He just needs to eat more and build up more strength. It will come with time I'm sure. We are enjoying the springtime and counting our blessing right now. I will update when the bloodwork results come in. Thanks for checking in on Ty!

Tuesday, April 8, 2003 9:07 PM CDT

Tyler had his CVL removed today! Yeah!!!!!!! You should have seen his face when he felt them take it out! He was smiling from ear to ear. The anticipation of it was almost more than he could stand! He was VERY anxious, he was so afraid it would hurt. He's been walking on air ever since. It is so good to see!
Tyler's 8th Birthday is coming up on the 21st. We are planning a party on Easter Sunday, which probably sounds strange. But I think it's fitting, it's a wonderful day to celebrate. Two days after his birthday is his one year anniversary of his transplant. And we will be leaving that day to go to San Antonio for his one year check up with Dr Wall. It's going to be a very busy week!! Alot of things have happened in the last year. We are very glad to be where we are at this point and we are looking forward to the future.

Thursday, March 20, 2003 3:33 PM CST

Tyler had another great checkup this Tuesday. He didn't need to have the IVIG, he received it last month and that will be his last. We are now trying to schedule a time to get his CVL taken out of his chest, it's been in since January 2002. I am amazed that it has not gotten infected after so long! We want to get it out cause baseball practice starts next week! His checkup in San Antonio is April 24th. We are planning on going on down to the beach for a few days after his appt. The boys deserve some sand time! Also, we are going to try and make it back to Sea World again and take advantage of the tour that he was offered last year but he felt too bad to take. That will be so much fun! Thanks for all your thoughts and prayers! He's doing GREAT! He has so much energy it's hard for him to take time to eat much less sleep. We will hopefully have new pictures soon. Please sign our guestbook if you have stopped by, I am printing all the signatures to put into an album for Tyler.

Wednesday, March 5, 2003 6:39 PM CST

*New photos today!* Hopefully it's the last of the cold weather pics!
Tyler is doing great, he has so much energy! He is gaining weight also. It's so good to see him feeling good and looking well. We had to have his hair cut, it was starting to get shaggy. What a blessing to have hair to cut! He can't wait to play baseball, he's been practicing outside on the days that it's been warm enough. We are anxious for more warm days!! Thanks for checking on us, luckily there is not much to report!

Monday, February 24, 2003 4:45 PM CST

Well, we have lots of snow! Personally, I'm ready for spring but the boys love it. Tyler had a good check up last week and recieved his IVIG which he is still getting every 4 weeks. The good news is that we don't have to go back to ACH for a month!! Yeah!! Right now all Tyler is taking as far as meds is the FAMVIR which is for his herpes to keep it at bay. We have been laying low for quite awhile because of all the illness that has been going around. It makes me nervous to get him out and about too much, there is so much going around. So, we stay home alot which is fine. He definitely has all his energy back! He is bouncing off the walls sometimes. I can't wait till the weather is warmer and he can get out and run it off! We will be going to San Antonio April 24th for his one year check up. Hard to believe it's been one year already, but we are very glad! Keep us in your thoughts, but he's doing great!!

Sunday, February 16, 2003 9:08 PM CST

Hi Everyone! Tyler is still feeling wonderful. We have a visit this Tuesday at ACH and he will get IVIG again. After Tuesday he goes to once a month visits, we can't wait! His one year anniversary is coming up April 23rd!! I can't believe it but I am so glad! We have an appointment with Dr Wall in San Antonio on Thursday, April 24th. It's hard to believe that it's been a year already and then in some ways it's been a very long year. We are happy to say that some of the memories are starting to be just that, memories. It seems like yesterday and it seems like a long time ago also. We feel so fortunate, we thank the Lord everyday that he is doing so well. We know how much we have been blessed.
All else is going great. Marc is almost finished with basketball and then, of course, we start baseball very soon. It will be nice to have Tyler's CVL line removed, but only when it's time. He is already talking about swimming in the pool when the weather gets warm.
Thanks for checking in on us, so far so good!! THanks for all your thoughts and prayers!!

Monday, January 27, 2003 at 09:39 AM (CST)

Hi Everyone- I am glad to report that Tyler is still doing great! He's feeling wonderful and eating better. His checkups have gone fantastic and he's really back to his old self again I think. He wants to play baseball this spring and Dr Wall says that's fine, to watch out for the sun. Hopefully, he will have gained back some weight by then. We are still working on school from home and he's going to the school from 3:30to 4:30 4 days a week after everyone has left. I am trying to do more with him at home now also, he likes it most of the time, of course there are days when it's a struggle.
Marc is doing great also, he's playing basketball right now. School is surprisingly smooth for him this year, what a relief. We are all looking forward to warmer weather when they can get outside more and use up some energy!
Tyler had his 9 month post transplant labs drawn last Tuesday so we are waiting to hear the results this week. Soon it will be a year!! Yeah!! We will let you know the results as soon as we find out. Thanks for checking in....

Thursday, January 09, 2003 at 05:08 PM (CST)

It's been so long since I have updated this site! I should be ashamed, but the good news is that the reason why is because we have been very busy being normal people! Tyler is feeling wonderful, he's full of energy. Just ask Dr Becton, Tyler won't give him enough time to check him over because he's ready to get out of there. We had a great Christmas and wonderful New Year. Tyler and Marc spent a week in Minneapolis with their Dad, they had a great time. Now it's back to school and I think they were ready. Marc will say "never!" but I do think he misses his friends. Ty's visits to the clinic are every 2 weeks still and he gets IVIG every month. That will continue until a year has passed since the transplant and that will be in April. It will be here before you know it! We are very blessed and are enjoying those blessings everyday. Thanks for checking on us, we will update again soon.

Monday, December 16, 2002 at 06:25 PM (CST)

Tyler is doing great, his arm and hand are almost completely healed from the shingles. It was a long and painful ordeal but thankfully it's coming to an end. He had some dental work done 2 weeks ago under general anesthesia. They had to cap a few baby teeth and his adult teeth that are already in will probably have to be porcelain crowned at some point, they have the consistency of chalk. Therefore, they are flaking off and pitting really badly. Dr Koonce was discouraged after the procedure. He says that it will be a long road but comparitively, we can handle it. They will start him on an aggressive flouride treatment this week and go from there. Tomorrow is our regular check up at ACH, we will see the dentist as well and will probably see him every month so that he can keep up with the detioration. Tyler is feeling great, his appetite is back! Yeah!! He is eating all the time now, what a change from a few weeks ago! We are so thankful. He is also doing great in school, he sees the teacher an hour a day four days a week. He is especially good at math.....reading is a little slower. He can't wait to be able to go to regular school again.
Marc is doing fine, he's playing basketball now. He is growing up, it's scary how fast. He's so tall now and I forget sometimes that he is only 12! We will check in after the appt tomorrow, thanks for checking in. There is a new picture today, for the Holidays.

Monday, December 02, 2002 at 08:38 AM (CST)

Tyler is doing well, we were very glad to be home for Thanksgiving! The shingles are drying up, but it has taken some time. The skin on his hand has completely pealed off and it has been itching alot but it looks great. He only uses it for the important things, like playing the Playstation! it is getting better everyday. He has finally started to eat again, he had lost some weight while in the hospital. Marc went to Minneapolis for Thanksgiving and came home on Sunday. WE missed him alot, especially Tyler. He is starting basketball this week which will keep us all busy. Tyler has a dr's appt tomorrow and dental appt on Wednesday. They will put him out for the dental stuff cause they have alot to do and he gets really anxious as you can imagine. I will let you know how it goes! Thanks for checking on us!

Tuesday, November 19, 2002 at 03:54 PM (CST)

Tyler is still in ACH but he is feeling better. The blisters are starting to dry up some and the redness around them is alot better. His leg never blistered the way his arm has and it looks like it's on it's way to healing. THey took him off his PCA pump this morning and he was having pain in his arm and hand. So, he is now on the Neurontin for nerve pain and the oxycodone to keep him from having any hand pain. THe oxycodone has helped alot, if he didn't have that they would have had to put the PCA pump back on for sure. He's hanging in there, but thank goodness he's feeling better. Thanks for checking in.

Saturday, November 16, 2002 at 04:07 PM (CST)

Just a quick note to let you know that Tyler is in ACH, room 4711. He's in isolation with shingles, they are covering his right arm and some on the right leg. He has been in alot of pain, but they are working to keep that to a minimum. He sleeps alot which is good. He has been miserable. Today he seems some better. The redness around the blisters are not as bright as yesterday. It was well on it's way to taking a good hold on him. Mom and I are taking turns staying with him and staying at a hotel, so we are getting rest. It was very hard to see him like this since he's been doing so great. Hopefully, we will be back home soon. I will update again later.

Wednesday, November 13, 2002 at 02:30 PM (CST)

Here is an update between dr's visits. This was supposed to be our week off but we will be going down to Little Rock early tomorrow morning. Tyler was not himself on Sunday. Friday and Saturday he played like he's never played before. He ran, he played ball. Anything he could do, he did. Sunday, he was whiny and didn't do much of anything until sunday nite when he played with his cousin Rese. Monday he complained that his right arm hurt. We decided he was sore from playing so hard. Tuesday, he right leg hurt. Around lunchtime he started screaming with it, it hurt so bad he was shaking. Of course, with arm or leg pain I worried even though his blood work has been great. We went to the hospital to have his blood drawn,(I won't go into that experience) but long story short we saw the pediatrician here who called Children's last nite. They were going to try and schedule us with the Dermatologist today but that was not possible so we will see Dr Becton and the derm guy tomorrow. This morning he has blisters down his right arm, it looks like shingles to me. He is taking tylenol with codeine, benadryl and motrin to get some relief. If those wear off he would be screaming again. They think this might be chronic GVH also, I guess we will see. I will update you tomorrow after the visit, oh and his blood work yesterday they say looked fine. Pray a little prayer for him tomorrow. We hope the pain eases up.

Tuesday, November 05, 2002 at 08:17 PM (CST)

We made the trip to Little Rock last night and stayed at a hotel since we had an 8 am appt with the dentist. Tyler loves to stay in hotels, even after staying in the hotel in San Antonio. The dentist took xrays and looked at Ty's teeth. I knew it was not going to be good, one tooth had already broken off and several were discolored and one has a hole in it, it isn't dark or anything but there's a hole. His two front teeth, permanent teeth, have slivers that have come off. The dentist says the best thing to do is to do all the work at once considering Tyler's anxiety level we would never be able to get it done with all the visits. THey have to pull one and do work on the 6 yr molars etc. He says that the drugs can do a real job on the enamel. We are hoping the teeth that haven't come in will be ok. Considering that these baby teeth have gone thru 2 differents rounds (1998, and now)they have been thru alot. ANyway, they will call me when we can schedule it. Tyler also had an echo of his heart and an EKG. Both went well and everything looked good was the preliminary report. We were also scheduled for a hearing check but we didn't make that one, hopefully they can reschedule for another day. The dental stuff sounds really bad but it's not. He is feeling REALLY good, his energy is way up and he looks good. We are so grateful that he is doing so well. The other stuff pales in comparison.
Please keep little Job in your prayers, he is in San Antonio and is back in the hospital. His family can use our support, I know how much it meant to us while Tyler was going thru hard times. His website is www.caringbridge.org/ar/job. Thanks for looking in on us, Tyler says "hi".

Friday, October 25, 2002 at 09:57 AM (CDT)

Tyler's check up this week went well. He received the IVIG again, hopefully this may be the last time. He doesn't have to take the Famcyclovir (for his mouth, herpes) any more so the only meds he takes is the Bactrim twice per week. He was very excited to know that the medicine is gone. Now, we will be thrilled when his central line is gone. He is so much more active and the line has been pulled a couple of times. We will ask next time when he can have that removed. He doesn't have another appt until Nov 5th, two weeks away! We are so very grateful that we have made it to this point and he is doing so well. I can say that he is almost his normal self again, now that his hair has grown back and his mouth is completely well I think he feels so much better, no one knows that he has been sick really. We still want to keep others in our prayers who are going thru the same things Tyler did. Job is in San Antonio and doing well, Devron is back in Little Rock but in the hospital and he can use our encouragement. Devron does not have website but we can keep him in our prayers. Tyler says "HI" as he runs thru the house! Thanks for checking on us.

Tuesday, October 15, 2002 at 05:12 PM (CDT)

Yesterday was the last day for Cyclosporin!! Yeah!! Tyler had a good checkup today, he was packing the backpack to leave before Dr Becton had even left the room. He took off down the hall almost running over one of the nurses and out the door he went. Next Tuesday he will get IVIG and then our checkups will be every other week. He had an incident that was probably an asthma problem in the middle of the nite last Thursday. It was scary but since then he's been taking Zyrtec and it has helped. We all are having sinus and allergy problems right now.
Marc woke up yesterday so dizzy that he couldn't sit up. He was nauseated too and it didn't get any better all day so we made a trip to the Pediatric Clinic here in town. He checked out ok maybe he's got a virus. They saw him again today to double check that he's ok. He is better, not as dizzy but he doesn't feel normal yet. My sister and I want to know what we are doing wrong as mothers since we both spend way too much time at the doctor's office with our kids. If it's not one, it's the other. Almost all the pediatricians here know us on site. That's scary!
We are going to be out of town till next week, will check up with you then!

Wednesday, October 09, 2002 at 09:43 AM (CDT)

Tyler had another good check up yesterday. His Bun and Creatinine are in the normal range. His blood work and chemistry looks great also. He has gained up to 48lbs!! yeah! We are down to the last doses of Cyclosporin and after next Tuesday he should be off altogether.
Tyler is wanting to dress up as Army Men, like in the movie or the Nintendo game for Halloween. At least his hair will be right in style for the army!
Next week I will be making a trip for work to NYC area. Tyler and Marc are going to Hot Springs with my parents for the weekend. They are looking forward to it, a whole weekend where they can get away with whatever they want pretty much. Tyler is doing well going to school after school everyday. He actually looks forward to it and he's catching up really fast. The one on one atmosphere is great for him. Marc is still playing football, he's making lots of tackles but comes home with lots of bruises. He's a bullethead, he loves it. We are doing great, thanks for checking in!

Tuesday, October 01, 2002 at 07:09 PM (CDT)

Tyler recieved the immune booster today at ACH. It takes several hours to go in so we left very early this morning, about 5:30am. We are beat! Everything looks good, his BUN is up a little so he needs to drink more again. His energy level has been really great, right now he's outside swinging and it's almost dark. I guess I should have said that I am beat, not Tyler!
Not much else to report, Marc is playing football still and enjoying that alot. He likes to sack the opposing quaterback! As soon as football is over, basketball starts so it keeps us going.
I am working at home now, but will take a short trip next month. It is wonderful to have a job that I can do this, I can't tell you how much of a blessing it is to be here since Tyler can't go to school. He is enjoying going 1 hour a day, it gets him out of the house at least and it makes him feel like he's part of it all.
Thanks for checking on us, oh yeah, Marc turned 12 last Thursday! Who believes that??!

Tuesday, September 24, 2002 at 08:25 PM (CDT)

Another good check up today at ACH! Tyler has had a rash on and off for the last couple of weeks. One day it's better, the next it's worse. To me, it does not look like GVH, at least not what I've seen in the past. It looks like eczema or soriasis or something. Anyway, the pediatric dermatologist looked at it today and they did a biopsy!! And it wasn't a little scraping type biopsy either! They used the emla cream to numb the skin and then they numbed further with a needle. THEN, they used an instrument to do a core biopsy, he didn't feel it but it really looked like it hurt alot. And would have if it wasn't for the lidocaine or whatever he used. The results will be in next week. In the meantime, he gave me cream for his face and abd plus said to use the greasiest lotion I can find. He says by looking he thinks it extremely dry skin also, but they will know for sure soon. Tyler is a really tough guy!
Thursday is Marc's birthday, he will be 12, already!! He had all A's and one B on his midterm grades this week!! yeah, he's really doing well.
Otherwise, we are well and enjoying the cool weather and the new play equipment. We will update you soon, thanks for checking in on us!!

Tuesday, September 17, 2002 at 06:44 PM (CDT)

Tyler had a great check up today, everything looks good. He still needs to drink more, I think that I have relaxed so much because he's doing well and I have not been following him around enough making him drink. He seems so much more like normal now, he's eating well and sleeping well. There are new pics also. For those of you who were wondering (Nurse Jo!) I do not have any new photos of the tongue, I will take some though. You wouldn't believe it, it's almost totally normal!! No lie! We don't even have to see the dentist here anymore it looks so good! Thanks for keeping us in your thoughts and prayers. We are very blessed!

Monday, September 16, 2002 at 02:35 PM (CDT)

Hi Everyone! Time gets away from me now that we are home and things are getting back to normal! Tyler is feeling really well, he's eating more also. He hasn't gained any weight yet but I think that will come shortly. He had a rash that was localized and Dr Becton didn't think it was GVH. It looks so much better today, it's almost gone. We went to Devil's Den this weekend with my sister, her husband and kids. We spent Friday nite in the cabin and came home Saturday because Marc had pictures for football and a game Sat nite. Marc was stung by a yellowjacket, he didn't see it well but said it was really big. His arm steadily swelled until this morning it was even worse. It was very red and the redness and swelling went from above his elbow to his wrist. I took him to the Dr today and they put him on Keflex for 10 days. Poor guy, and when he says it hurts it really does, he does not complain very often! That is about all that's happening here, it's almost time to take Tyler to school for his hour. He seems to really be enjoying it. I will write again soon, we have a check up at ACH tomorrow.

Wednesday, September 11, 2002 at 09:56 AM (CDT)

We had a good check up yesterday, Tyler's blood work looks fine. He needed to get his immune booster, IVIG, yesterday so we didn't leave till almost 4:30pm. His appetite has actually increased but his weight is down alittle. Dr Becton says that the weight should increase in a few weeks if he keeps up the eating.
We have heard that Devron is doing better, he's still in San Antonio. Also, there is a little boy by the name of Job who will be going down soon. He is 4 years old. We need to keep them in our prayers as they start out on a difficult trip. But, as we know, it's hard but it's necessary and you can make it through.
Tyler says "hi", he is going to school after hours for an hour and he's really liking it. He's only been once but he's going to go 4 days a week starting this week. I will try to write more in the coming days instead of only once a week or so. Things are starting to get back to normal though and we are grateful for that.

Wednesday, September 04, 2002 at 07:59 AM (CDT)

Tyler woke up last Saturday with a tummy ache which developed into diarrhea and vomiting so we ended up in the ER of the brand new hospital here to get fluids so that he wouldn't dehydrate. They gave him phenargen(sp) which stopped the vomiting and he went right to sleep. Sunday he woke up as if nothing had happened. He was eating a turkey sandwich Sunday evening.
The weekly trip to Little Rock went well, his blood work looks great! We are gradually weaning him from the cyclosporin which I know he will be glad to be rid of. We bought a new swing set that he and Marc can both take advantage of, it was put up this weekend also so now they can get out and climb around all they want. Good news from here, we hope that it keeps going. The only problem we have is getting Tyler to eat!!

Thursday, August 29, 2002 at 11:17 AM (CDT)

The report this week is pretty much the same as last. Tyler if feeling very well, he's playing alot. His energy level is really good. The tongue is improving also, at a much faster rate than I thought it would. The dentist has been amazed and so have I, we thought that it would be the same for quite awhile before we could see a change but every week it looks dramatically better. The "mom home shool" project has officially started. (ahhhh!) The school will be providing a teacher 4 days a week for an hour each day, that will help tremendously! He does so much better for someone else, he is so tired of seeing me all the time! We are taking it in short intervals, it's been so long since he's done anything as far as school goes that it's hard to just jump right in. But his brain needs the exercise also, something besides Nintendo!
Marc is good, he's playing football which makes me nervous but he loves it so far. At least he's big enough that he can hold his own. He loves middle school, at least that's what he says. He likes the freedom but I don't know if he realizes the responsibility that it brings too. Those teachers are not going to be holding their hands anymore! We will see how it goes. We are getting a new swing set/ play set this weekend. It's big enough that Marc can climb on it also. I think this will help Tyler alot, he can climb and swing and get alot more excercise than before. WE are excited about it. Thanks for all the prayers and the thoughts that are still going out for Tyler, so many have been answered! Talk to you soon.

Wednesday, August 21, 2002 at 11:26 AM (CDT)

Just a quick note to let everyone know that the check up yesterday in Little Rock went great. Tyler's tongue is doing REALLY well, it looks better every time. His creatinine level is good also. I had a meeting with the school today and he will start going after school for an hour 4 days a week. I think it will work great for him to go there, it will be more like he's really going to school. I think he will be excited. Marc is enjoying football although practices are really hot right now. He says he likes middle school, he has more freedom and he likes to change classes. It's so hard to believe that he's in the 6th grade! Slowly getting back to semi normal here, but everyone is feeling good, that 's a big plus!

Monday, August 19, 2002 at 08:38 AM (CDT)

Tyler had another check of his creatinine on Friday and it looked great, so he just needs to keep drinking lots of fluid. Gatorade seems to be the best. He is so sick of me following him around and reminding him to drink, he rolls his eyes at me. Otherwise, he is feeling great. His energy is good, he's playing all day long. His eating is so, so but it's always been that way except for when he started off on the prednisone. Things are slowly getting back to somewhat normal. Tuesdays are our weekly trips to Little Rock. Marc started back to school today, he's in the 6th grade now! I can not believe it. I have a meeting with Tyler's teacher, the principal and the resource teacher on Wednesday to discuss how to handle Tyler's at home schooling for the fall. Tyler would love to be in school with everyone else, but he knows why and knows that he will be there soon enough. We will keep you updated...tomorrow we are on the road. :)

Wednesday, August 14, 2002 at 08:33 AM (CDT)

Hi Everyone. We went to Little Rock yesterday and the good news is Tyler's tongue is looking much better and his blood work all looks good for the most part. His creatinine level is elevated which is an indicator of kidney function. So, the home health nurse, bless her heart, came out to the house last nite at 8 and started an IV which will run until this afternoon at 2. Then she will draw another level and if it's normal then we can go about our business, Tyler just needs to drink more. If not, we have to go back to Little Rock and be admitted to the hospital and see a nephrologist. So, we are waiting today and hoping that we can stay here and Tyler REALLY does not want to have to go back to the hospital, as you can imagine. This was really unexpected, he's been doing really well and feeling good. I will update you this afternoon, but as I said he's been doing well other than this surprise. Marc has been gone to his dad's in Minnesota and he returns today, we have missed him alot! School starts next week and Marc has been really excited about that but even more excited about football, first practice for him is friday. Gotta go;, write again this afternoon.
Wednesday 5:30 Just wanted to let everyone know that Tyler's creatinine level was normal this afternoon so we do not have to be admitted. He just needs to drink more and I need to follow him around and make sure that he does. What a relief!! Also, Dr Wall says that we can reduce his cyclosporine level a little each week, so he is on his way to getting off that as well. We are celebrating!

Tuesday, August 06, 2002 at 10:57 PM (CDT)

Tyler had another check up today at ACH. I called San Antonio before going to the clinic this morning and they told me that his RFOP was 100% graft, which means that 100% of the cells that they tested had DNA of the donor which is wonderful!! We want the donor transplant to be the only thing producing cells. So that was great news before we got there. Everything looked good as far as blood work and he saw the dentist who will see him every week as well when we go to clinic. Tyler was very anxious while we were there, especially when they put us in a procedure room so that he wouldn't be around alot of other kids. He associates those rooms with bone marrow procedures and he didn't like it at all. All of the things he has been thru has taken it's toll. It will take some time for him to acclimate again. But we are doing well and still realizing everyday how lucky we are to be home and all those things we take for granted.

Friday, August 02, 2002 at 05:37 PM (CDT)

Tyler is feeling well, but it is an adjustment being home. We are so excited to be here but it's almost like moving again. Tyler has been playing with his cousins and having alot of fun. He is not eating much at all but it could be related to the prednisone that Dr Wall stopped on Monday. We saw Dr Becton on Thursday and everything was good, we will see them again next Tuesday and Tyler will see the dentist there as well to check up on his tongue. We will keep you updated from here, some times we are so busy seeing friends and family and trying to unpack that we don't write as often. Tyler says hi to everyone that has been writing and praying for him. I will be putting new pics on in a few days!

Sunday, July 28, 2002 at 03:52 PM (CDT)

WE ARE HOME!!!!! WE ARRIVED YESTERDAY AFTERNOON, IT WAS A LONG TRIP MAINLY BECAUSE WE HAD SO MUCH STUFF IN THE CAR WITH US THERE WAS NO ROOM TO SIT. AND THAT IS AFTER WE SHIPPED I DON'T KNOW HOW MANY BOXES! TYLER IS PLAYING WITH HIS COUSIN AVERY TODAY, HE HAS BEEN LOOKING FORWARD TO THAT FOR A LONG TIME. WE CAN NOT TELL YOU HOW EXCITED WE ARE!!!!!!! TOMORROW WE WILL BE GOING TO LITTLE ROCK FOR OUR WEEKLY CHECK UP WITH DR BECTON.

Friday, July 26, 2002 at 10:01 PM (CDT)

New pictures today, some are from a few weeks ago and the one with Dr Wall is from Monday. Tomorrow we are going to a birthday party for a little boy who had his transplant a short time after Tyler. He and Tyler are practically twins when it comes to blood counts etc, so we have seen them alot in the clinic. They have a great, loving family and the party should be alot of fun. Tyler is really looking forward to it. Day + 94.

Thursday, July 25, 2002 at 07:47 PM (CDT)

GUESS WHAT?? WE ARE COMING HOME ON TUESDAY!!!!!!!!!!!!
It has not sunk in yet, but that is the plan. Dr Wall saw Tyler today, we have another appointment on Monday and then we are on our way! It has been a long haul as you all know, but it is finally coming to an end. Tyler looks great and feels great. We will be going to Little Rock once per week for blood work but we will be in our own beds the rest of the time! We don't remember what a soft bed feels like! And, we are not going to miss the hotel for one minute, this place gets really small sometimes. We are so thankful for all of you who have written and kept our spirits up thru this ordeal, it has meant so much to all of us but especially to Mom and myself.
We will let you know how the packing goes, and we have a birthday party to go to Saturday. After that, we will be seeing all of you soon!!
today is Day + 93!!

Tuesday, July 23, 2002 at 06:34 PM (CDT)

Tyler has felt really good today. Now that the meds are decreased he is much happier as you can imagine. We tried to go bowling today but there was too many people. We are going to try early in the am tomorrow before everyone else gets a chance. We are starting to try and compact everything hoping that we can get it all in one car and that way no one has to come down to help us get home. If we can't get it all in I think we will either ship it or throw it away. Anything to get home! We don't have another clinic appt till thursday. I messed up yesterday, today is Day +91 yesterday was 90, I was getting ahead of myself! I am too anxious!!

Monday, July 22, 2002 at 03:38 PM (CDT)

Tyler had a wonderful day yesterday. We went to the Arcade at the mall down the street, there was no one there. He and Marc had a blast wasting quarters! Then, Tyler said he wanted nachos(chips with cheese) and he alot of them. I couldn't believe it. He has not complained of his mouth hurting even once. He had more nachos later also. The only problem has been when taking so many meds he gets nauseated and throws up. Dr Wall has taken him off alot of the meds today. SHE ALSO SAID THAT WE CAN COME HOME NEXT WEEK!!! I don't know what day yet but at least it's soon. We took Ty and Marc to see Lilo and Stitch today. Tomorrow we have a birthday party to go to of one of the other transplant kids. We have something planned for almost everyday to keep Ty occupied and out of the hotel room, it was getting depressing. Today is day +91!! We are coming home soon!!

Saturday, July 20, 2002 at 01:25 PM (CDT)

We are back at the hotel. Tyler had very little pain after he got to his room. He was in alot in the recovery room. I kept waiting last nite for him to ask for more morphine or to start crying with pain, but it never happened. He did get really agitated and we finally asked for some. He did not sleep at all but he was not complaining with pain. Dr Grimley came by and said we could get out of there. Just as we were leaving the oral surgeon came by. He said he had waited and come later in the morning because he was sure after all he did that Tyler would need to stay longer than one day. But when he saw him and looked at the tongue and found out he was drinking etc, he said take off. Tyler is on more meds now but most of them are temporary to make sure he does not get an infection. We will go to clinic again on Monday. Today is day +88!

Friday, July 19, 2002 at 04:18 PM (CDT)

Now that it's over I can say that it was a "comedy " of errors this morning before surgery. AT the time it was not very funny. Surgery went well, Dr Wall was present for the whole thing THANK THE LORD! They had to remove more than they thought they would. He was already biting on the other side of the tongue as well. So, they took off quite a bit. He is staying in the hospital tonite to get morphine and to make sure it does not swell too much. It will be VERY VERY sore. But, it's over and he will be able to eat again soon. The rest of the bumpy areas will take years to go away completely but they should not give him much trouble. I am heading back to the hospital now. Will write more tomorrow.

Thursday, July 18, 2002 at 05:45 PM (CDT)

Today Tyler had a blood transfusion and recieved IVIG which is an immune system booster. He gets it every 2 weeks. We were in clinic from 8:15 till 4:00, that makes for a very long day. Tomorrow is the day for the mouth surgery. It will be as an outpatient so we can be back here tomorrow nite. Some of the pieces of his tongue are coming off but it won't be enough, they still need to cut some off. They will be using a laser, Tyler thought that we were saying "razor" and needless to say, was throwing a fit. After we let him in on the fact that is was not a razor he calmed down, I never would have quessed that he thought that. Anyway, the surgery is at noon, should go fine. After his tongue is well we can drop one of the antiviral meds that keeps his blood counts screwed up most of the time and things should normalize. He's feeling pretty good today, and the best news is, after 2 weeks of absolutely nothing at all, today he decided he was hungry and actually ate food!!! yeah!!! We will let you know how the surgery goes tomorrow.

Wednesday, July 17, 2002 at 02:46 PM (CDT)

We spent the day in clinic today but had some frustrating problems with the lab so we didn't get anything done, but we do know we will need to get blood first thing tomorrow. We didn't do it today because we had an appt with the oral surgeon. He thinks his mouth looks some better but he did admit that he has never seen anything like it. He wants to use a laser to do the surgery but the hospital does not have the one he needs so he is checking with someone else. I told him that Arkansas Childrens would surely have what was needed and the people to do it, but we will see what happens. I think Dr Wall wants him to have it before we leave.
Grandpa Rex is on his way to the airport to go back home. Carlene and Marc are staying for the duration. We are very glad to have them. Today has been a frustrating day but those will happen along the way. Tyler is a little weak because he needs blood but should be feeling better tomorrow. We will let you know.......

Monday, July 15, 2002 at 02:48 PM (CDT)

Tyler had a fever of 102 last nite so we took him to the hospital. They gave him antibiotics iv and drew cultures and we were able to come back to the hotel. He has not had a fever since. We had a clinic visit this am and his counts look some better than last nite. He needed Magnesium iv since he has not been able to hold down the Mag that I give him by mouth. The outside of his mouth continues to look better and better. The tongue does not, so we are waiting to hear when he see the oral surgeon again. It will probably have to be an in the hospital surgery. It has now been a week and a half since he has eaten, if you don't count 5 bites of jello. Dr Grimley says that some patients get some gut GVH around this time and have no appetite, that combined with his tongue makes it nearly impossible to eat. He has lost some weight of course with this. He is still drinking so that helps alot. We are hanging around the hotel alot in case the fever comes up again, also it has rained all morning. There is a little boy that had a transplant 125 days or so ago that needs everyones prayers. His name is Ray and they think he may have a pneumonia, but he is not doing very well right now, please keep him and his family in mind. He has a little sister about 16mos or so and his mom is pregnant. We are very much hoping that he gets better real soon. We will check in with you tomorrow....today is Day+83.

Saturday, July 13, 2002 at 09:44 PM (CDT)

Tyler's mouth on the outside is much much better. Dr Wall will be very excited when she sees it on Monday. The inside looks about the same but he says it does not hurt so that's the main thing. The excess is still going to have to be taken off, we are waiting to hear about the oral surgeon. Hopefully, he can take care of it quickly and without much pain!!
We have been hanging around the hotel alot resting and taking some drives. We are keeping it very low key. Tyler has been talking a mile a minute since Marc has been here. That has helped him so much! We are planning on keeping Marc here for the duration, unless it runs into school time! haha, we hope not! It looks like they are predicting rain here again tonite, the people of San Antonio have had enough of that already. Everybody have a great weekend, we plan on it also.

Thursday, July 11, 2002 at 01:18 PM (CDT)

Hi! Grandma, Grandpa and Marc arrived safely yesterday. We are very glad to see them. Tyler saw an oral surgeon yesterday about his mouth. He has a large area that needs to be removed, he can't eat and can barely drink. The oral surgeon was pretty amazed at what he saw and needed to consult with Dr Wall before he does anything else. There is the problem of bleeding and sedation etc that he does not want to attempt until he has gone over everything with her. Until then, it's drinking and instant breakfast to get some calories. She had taken him off the prednisone because it tends to make the herpes worse, but once off the prednisone the GVH can appear and herpes tends to make it come out more, it's a very vicious circle. The only thing he needed in clinic was some fluids to make sure he does not dehydrate. He is making his own platelets, his liver chemistry looks good. He does have some diarrhea which can be GVH since he's been off the pred. so now he gets it every other day to try and prevent further problems there. If we can get his mouth in shape to eat maybe we can keep moving forward again. We hope to get to get out some with everyone while they are here, it's sunny now but they are expecting more rain to come in. Next clinic visit is Monday! today is Day+79!! We are getting closer and closer.

Tuesday, July 09, 2002 at 10:46 PM (CDT)

Sorry it's been so long since I have updated the site. Tyler had to go back to the hospital Friday nite about 9pm. His mouth sores, inside and out, were worse and he had a fever. He had quit eating and drinking, so there was nothing left to do. He was released today and we are back at our "home" away from home again. Basically, the herpes that he has is very strong. He was off the antiviral meds for only 3 days and it had returned and was growing again. Dr Wall put him back on the antiviral twice a day and added another drug. Since adding the additional drug, his mouth has actually healed some around the edges. He has quite a remarkable tongue, if you saw it you wouldn't believe it. On the right side there is a portion that is hanging by a pedicle and he bit it by accident last nite. It bled quite a bit. Dr Wall is arranging an appointment with an oral surgeon to remove this. It effects his eating as well as his speech because of it's size. It will be great to be rid of this, but I dread the process!
Marc and Grandma and Grandpa are flying in tomorrow. Tyler is very excited! This will be very good for him, it will get him up and going more. As much as I would love to come home, at this point it's just good to be back at the hotel!! Will write more tomorrow.....

Sunday, July 07, 2002 at 11:14 AM (CDT)

just a quick note, Tyler is back in the hospital. We had to restart the antiviral meds twice a day, and he's having fevers. He's doing fine and it should only be for a few days. We are in room 3384.

Thursday, July 04, 2002 at 01:30 PM (CDT)

Hi Everybody- We didn't write in yesterday, sorry about that. We went by the clinic to drop off Tyler's Nintendo for someone else to use that is getting a transplant. We met another girl, she's about 13 or 14, from Texas who will be getting a transplant. Her mom does not speak English and they just arrived on Sunday. Alot of these people really need our prayers, I feel very lucky to have the advantages that we have because there are many who don't.
We went to Block Buster yesterday, Tyler wanted to trade in his Playstation games for new ones. We have not had any problems with the flooding so far, we are in an area that is high enough to be out of trouble.
Ty's mouth is still giving him problems. If he gets any food in it at all it starts to hurt. We are keeping medicine on it or vaseline, neither one works that great. Today he is really having a hard time because he thinks if it doesn't get well we can't go home. I explained that it will take a long time to heal completely and that we can probably go home before then.
We are going to Artie's house, another little boy who had a transplant at the same time as Tyler. They invited us over for the 4th, too wet for fireworks but they are cooking so we are looking forward to it. Artie has a great big hispanic family, they are really nice people, we should have a good time. Then it's back to the clinic in the morning, we hope the blood work looks as good as it has the last few visits. Today is day +72! Everybody have a great holiday and shoot some fireworks for Tyler.....

Tuesday, July 02, 2002 at 10:22 PM (CDT)

Tyler had a clinic appt today. His platelets are still steady which means he is producing his own. His WBC is rising. So he did not need transfusions and Dr Wall decreased his prednisone and discontinued several other meds. Today was the last day of the antiviral med, that combined with the decrease in the prednisone, we are hoping his own immune system will take care of the herpes sores left around his mouth. We are gradually working our way home....Tyler has had some nausea and vomiting we think from the decrease in steroids. But it is only once or twice in a day, nothing continuous. He is still playing and eating although not as much.
With all the flooding here we have been spending alot of time in the hotel. It is still raining outside so it's not over yet. Seeing all this water on TV is amazing. We are located in a fairly high area of town, no problems so far. If there should be we will be going to the hospital and they will have to find a place for us in that case. I don't know if they know this yet, but they will if it gets bad! We have tomorrow and thursday off, next clinic appt is Friday. Today is +70!! Do you believe it?!
There is another boy from Arkansas here,he had his transplant today. His name is Devron and he can use everyone's prayers just as we have. He is doing well as far as I know now.

Monday, July 01, 2002 at 08:58 PM (CDT)

There's nothing really new to report today. It is pouring rain in San Antonio and there has been some flooding. We spent the day here at the hotel, only going out to the ATM and the postal center for stamps. Tyler took a nap this afternoon. He is not eating as much as he was, it's almost like he is back to the level before the transplant. I just don't want him to lose weight. We have an early appointment tomorrow in clinic. It will be very interesting to see what he counts are. Maybe we will be one step closer to going home.
Alot of you have read about our friend Andy. Our thoughts and prayers are now for his family, to try and help them through this very hard time. Please continue to pray for them and ask the Lord to be with them and comfort them. We are thankful to have known him for that brief period here in San Antonio and are grateful to have gotten to know Marcy, Keith and Brandon.

Saturday, June 29, 2002 at 09:33 PM (CDT)

We have spent a quiet day here at the hotel, not doing much of anything. It rained off and on all today, which is unusual since we've been here. Tyler has been playing all day and eating in between. He is not eating as much as he was before, mainly because his steroid dosage is lower. I am trying to keep him eating high calorie foods so that he doesn't lose weight. Dr Wall has taken him off of several meds so that has been a big relief. There were so many at one time it was hard to get Tyler to take them all. He is sleeping well, I think he's finally catching up on that.
Please pray for our friend Andy, he is having some serious problems. He and his family need our prayers.

Friday, June 28, 2002 at 05:18 PM (CDT)

We spent most of the day in clinic today, Tyler had a blood transfusion. His platelets are stable from Wednesday, that is a good thing. Dr Wall told me today that she hopes that when she lets us go she plans on us going home and only having to visit Little Rock once a week or so. That was what we were hoping from the beginning but that had changed after Tyler had the herpes problem. We still do not know when that will be but it will sure be good to be home.
We don't currently have plans for this weekend but it will be good to not have to go to clinic for a few days. In fact, we don't have to go back till Tuesday, that's progress also. It's supposed to rain here this weekend, if it does that will be the most rain we have seen since we arrived. If Tyler could be out among people, there would be plenty to do, but since he's restricted we will probably stay close to the hotel.
Marc is at home and has been working on the blueberry farm with my Dad. He seems to be handling everything well. I think that he is busy enough that he does not have too much time to think about stuff. We miss him alot, especially Tyler, he has talked to him on the phone though. We hope that we will be writing to everyone from home before too much longer.

Thursday, June 27, 2002 at 04:58 PM (CDT)

We had the day off from clinic today so we slept in alittle. 8:00 is about as late as Ty will sleep these days. We went to Walgreens to pick up a prescription for him. Then we went to a small mall down the street from the hotel, all these places we go to only at a time when there are very few people there. This mall has an arcade area and there was no one there. The owner saw Tyler and told me that he had been a nurse for 25 years and he unlocked all the games that Tyler wanted to play and let him play free. Then when we were ready to leave, he gave him free selection of the toys at the counter. This man was so generous and Tyler enjoyed himself so much! It's amazing how out of the blue you run into people like this man!! We then checked out the movie theater and only 7 people had bought tickets to Scooby Doo so we went, but it didn't last long, Tyler thought it was a cartoon movie so he was afraid and we left about 1/2 way thru. But, besides that he had a great day and the excercise he got walking and playing air hockey and skee ball was great for his legs and arms. He didn't even realize he was getting it!
We need to still keep Andy in our prayers, he is having some problems and they need our prayers and support.

Wednesday, June 26, 2002 at 02:41 PM (CDT)

We had a clinic appt this morning, they drew his blood and we were out by 10:30. He will probably need platelets in the next couple of days but everything else looks good. Dr Wall has continued his antiviral meds for another week and then she says that she will be calling Dr Becton in Little Rock so maybe we can at least get there sometime soon. We tried to go to the park to swing today but the swings were in the sun and it's really hot so we went to Sonic for a Blast instead, I think that was a good choice! We are going to stay in and stay cool today. No clinic visit tomorrow, next one is friday. Please keep our friend Andy in your prayers, he is having a hard time right now. We will be thinking of him and praying for him.

Tuesday, June 25, 2002 at 10:06 AM (CDT)

Tyler had a great restful night last nite. He is having less problems with his bladder now. He woke up at 8:15 today and wanted pancakes and he ate them all. We have the day off today from clinic, we are going to try and go to a toy store if we can find one that is not crowded. Tyler is hungry again he just informed me, so it's back to the kitchen. Check out the new pics!!

Monday, June 24, 2002 at 11:34 AM (CDT)

Hi Everyone. Tyler had a great weekend playing with Marc and Braden! He was talking more than he had in months and he played and teased just like he did before, it was a really good jump start for him and we hope that this will remind him that there is a "normal" life there waiting for him. Sometimes it's easy for these guys to forget since they spend so much time at the hospital and taking medicine etc. His check up was great today, his sodium is up in the normal range now and he didn't need anything by IV today. His mouth is drying up slowly but it does look better. We hated to see the guys go this morning, it was very hard. We really hope to be closer sometime very soon, we are SO glad they came down!! Our friend Andy was in ICU this weekend, but we are extremely glad to say that he's out of ICU now and doing better! Please continue to pray for him. We will report in later,

Thursday, June 20, 2002 at 09:28 PM (CDT)

We had a day off from clinic today, because of that it felt like Saturday all day. We woke up late which really felt good. We drove to Boerne (Bernie) which is a small town north of San Antonio that is mostly a tourist town, lots of antique shops. We found a candy/toy store which suited Tyler just fine. It was a good way to get Tyler to walk and get excercise without a fight. We bought a sling shot there so when we got back to the hotel he played with that outside for awhile. He had a good day today, he felt good for the most part and teased around more than usual. Tomorrow is back to the clinic but hopefully it will be a short visit. Tomorrow is a big surprise for Tyler. Marc is riding down with Dan and Braden for the weekend! Tyler will be so surprised.......we can't wait!!

Wednesday, June 19, 2002 at 01:24 PM (CDT)

Tyler had a blood transfusion today and we were only in clinic for 3 hours. We went to Block Buster right after clinic and Tyler picked out 2 new Nintendo games to play. He can go into the store since at 1pm there aren't any people there except the employees. You would think we were going to Disney World, he gets so excited. We get to skip a day tomorrow and don't have to go in at all! We are thinking of something special to do to celebrate. We are hoping that we get a handle on the herpes and maybe we can go to Little Rock sometime soon. Take care and we'll check in tomorrow. Ty says hi.

Tuesday, June 18, 2002 at 06:27 PM (CDT)

We spent the morning in clinic, it was time for Tyler to get IVIG which is an immune system booster. He gets it about every 2 weeks. It looks from his blood work that Tyler's blood type is converting from A+ to O+ now. This is the normal time for that to happen. He is anemic and will need a blood transfusion tomorrow, that is probably why he is grouchy and tired. Again, all this is expected. If we can just get rid of the mouth problems we would be home free. Dr Wall has 3 patients now from Arkansas, that alone will keep her busy! ANdy had his transplant today! I have not spoke with them but we hope all is going well. We expect Ty to feel better tomorrow so hope we have more to report. He is wanting to come home and see Marc.

Monday, June 17, 2002 at 11:30 AM (CDT)

We just returned from clinic, we were only there from 8:30 till 11:00 today. Dr Wall wants to restart the antiviral meds for Tyler's mouth again once a day. He had some pain this weekend and it looks wet today, so we will see if this keeps the herpes from becoming active again. But, this will effect his electrolytes again, so it's a merry-go-round but not very merry! Otherwise, he's feeling good and eating but salty stuff hurts and that's what he needs to eat. Tomorrow he gets the IVIG which boosts his immune system which should help the herpes as well, we will probably have a long visit tomorrow. Today we will play outside and do the usual stuff, laundry, cooking etc etc. Marc is doing fine, playing ball and working on the blueberry farm. We miss him alot!! Update you later......

Sunday, June 16, 2002 at 02:02 PM (CDT)

Hi, We had a day off yesterday from going to the hospital or clinic but we did go this morning and they did blood work to check out his sodium level. The level was good and so was everything else so we were back by 10:30, I think that is a record! Tyler's mouth has been bothering him some yesterday and today, but it seems to be some better now. We have been painting today, I bought a kit at HObby Lobby to build a bird house and we've been painting it. Ty is a good little artist and he loves to paint. The weather is nice today so we've been out a couple of times to play ball. It's nice to be able to do some normal things, and it's nice that Tyler feels well enough to do so. Our friend Andy was admitted Friday to start chemo. He had his radiation last week. We need to remember them while they are going thru his transplant and keep them in our prayers. Things are going well here, hope everyone at home is fine and we'll write more tomorrow.

Friday, June 14, 2002 at 03:25 PM (CDT)

We just got back from clinic, Tyler had to get platelets and sodium. He had sodium yesterday also, Dr Grimley has prescribed it also for him to take 3 times a day. He is feeling good and eating good also. Maybe eating alittle less than he was but ethat is probably good, he was overextending himself somewhat before. We were one of the last ones in clinic today so the few that were left were watching Shrek. At the end there's a segment where the characters sing some popular songs and it was so funny, one of the other little boys who is about 5 I think was singing out loud as loud as he could. The clinic nurses were singing along too, it was really funny. We do not have to go in until Sunday and have his sodium checked again. Another week gone, today is Day+52

Wednesday, June 12, 2002 at 11:00 AM (CDT)

Sorry I missed yesterday, we spent very little time in the clinic. We were only there about an hour and a half today, progress! Tyler's wbc is 6.2, his platelets are alittle low so he will get those tomorrow more than likely. Everything else looks good, sodium is still low but not enough to get an IV. Potassium looks great and Magnesium he is getting orally everyday. The longer he is off the antiviral meds the better it should look. His mouth sores are dried up and starting to heal. His tongue is healing also, it looks like a bunch of grapes but has new skin on it. He is feeling better every day. We have already been outside playing baseball today. I bought him a bag of punching balloons to try and get some exercise for his arms. The baseball helps that alot too. Guess what? today is day +50!! Half way there!

Monday, June 10, 2002 at 09:46 PM (CDT)

Today we spent the day in clinic, from 9 to 4pm. Tyler needed sodium by iv which had to be given over 4 hours. The Drs stopped the antiviral med and one of the bladder meds today. HOpefully, now that the antiviral med is gone some of the electrolyte problems will go away. His WBC count is 5.2 today and his platelets are steady. We are making progress. Tyler is feeling more like himself and playing more as well as laughing and talking more too. He still doesn't talk to any of the drs or nurses, it's his way of control I think and that's ok after all he's been through. We hope we can come home soon, today was day +48.

Sunday, June 09, 2002 at 04:33 PM (CDT)

Hi everyone- we are happily at the hotel again. Tyler's pain is still gone and he is doing great. Yesterday, he wanted to color and paint which he has not wanted to do since before the transplant. Today we played baseball outside, Tyler wanted to bat! Again, we haven't done that in so long! He is more himself now than he has been thru this whole ordeal. His legs are stronger and look like he has gained some muscle and fat in them. His appetite is still to where we are constantly cooking and he is constantly eating. I am feel very relieved that he has made another milestone. Tomorrow is another trip to clinic, we did not have to go to the hospital this weekend for meds, we gave those here so we have been 2 whole days without seeing a nurse or doctor!! I will let you know how his blood work is tomorrow. Today is day +47!

Friday, June 07, 2002 at 12:40 PM (CDT)

We are happy to report that Tyler will be getting out of the hospital this afternoon. His new medication has seemed to work on the pain he was having, although, he is incontinent right now. But that will resolve hopefully soon, the main problem was the horrific pain. I don't know that we will know the cause for certain. The new med helps with bladder spasms etc so that might be the culprit. We are so excited about getting out again! Tyler said that he wants a chocolate donut when we get to the hotel.
Marc is at home and doing well. He had a check up last week and they found blood in his urine, so they repeated it and it was still there. Today they drew blood so we will see what that shows. He had blood years ago when he was only 3, after an IVP etc no reason was found. We seems to be having multiple bladder and urinary tract problems these days! We are definitly hoping that nothing shows up out of order in Marc's blood work, please keep him in mind as well as Ty.
Mom and I are so thankful for all the help we are getting at home. Dad, Missy, Grandma Jessie and Treba are keeping up with things around the house and taking Marc where he needs to be, which is a big task with ball games and tudoring etc. Grandma Jessie has been chauffering(sp) Marc everyday and cooking for the two bachelors (Dad and Marc) some. I am sure there are alot of things they have done that I don't even know about........we want to say thanks to them. Tyler says "hi" or should I say he gives the thumbs up sign to everybody. We will report in tomorrow from the hotel!

Wednesday, June 05, 2002 at 03:18 PM (CDT)

Tyler is doing some better today. They were able to take out the catheter so he is more comfortable but still has ALOT of pain when he urinates. He does not have an infection or herpes there so that is good. It's still possible that he has a stone. Dr Wall is planning on us getting out tomorrow, we hope so. Ty is still eating well and drinking. But the pain has made him very scared and isn't playing much. hopefully that will change, it will be good to be out and have him up and walking and playing again.

Monday, June 03, 2002 at 02:22 PM (CDT)

Sorry to report that we had to take Ty back to the hospital about 2 am. The urinary tract pain was too much and he couldn't go the bathroom. They started him on a morphine pump for the pain and he's already doing better. Dr Wall says we won't be in long she doesn't think, he needed blood but he had a reaction to that and they had to stop it, they will retry this afternoon. He will get the antiviral meds twice today so that may help all the way around. We hope to have better news tomorrow......

Sunday, June 02, 2002 at 08:49 PM (CDT)

Hi, we spent most of the day again at the hospital getting meds, IVIG, antiviral and potassium. Ty will probably need platelets tomorrow, we'll see. His urinary problem has gotten worse, it is extremely painful every time he goes to the bathroom to the point of screaming. We are waiting to see if the cultures grow anything tomorrow. If we didn't have this herpes problem we would be sailing pretty smooth right now.
Andy's family arrived here safe today, it was good to meet them. They have an appointment with Dr Wall tomorrow. I am sure we will be seeing alot of each other over the next few weeks.
Tomorrow is more of the same, clinic at 9am till ??? but we are progressing even if it's slowly!

Saturday, June 01, 2002 at 08:58 PM (CDT)

Today we went to the bone marrow transplant unit instead of the clinic to get Ty's blood drawn and get his antiviral med. He also needed potasium. We are trying to give me foods that are rich in magnesium and potassium but it hasn't been enough. It is getting hard to remember all the meds that he's getting by mouth now. But he's being a real trooper and taking them all well. Dr Wall thinks that he is going to need the antiviral med twice a day instead of once so that will mean that someone from Home Health will be coming by in the evenings. Tyler's mouth is still very sore, mostly on the outside where the sores are. The inside has healed nicely. He's having some urinary problems too, so they did a culture today to find out if there is an infection or a viral thing going on there as well. THE GOOD NEWS IS.......his platelets are looking steady, which means that he's probably starting to make platelets which are the very last ones to come in and Dr Wall says that they have come in early... YEAH!! He is still eating like there's no tomorrow and usually still starts the day with spaghetti. We are all missing Marc... we were very used to him being here and it seems like we are missing a big piece to the group but he's at home with Pa and seems glad to be there. He's working on the blueberry farm this summer and playing baseball, that will keep him busy. We will check in with you tomorrow, Ty has already gone to sleep, he's worn out.

Friday, May 31, 2002 at 07:21 AM (CDT)

Sorry I didn't get a journal entry in yesterday. We spent a good part of the day in clinic. Tyler's electrolytes (potassium, magnesium etc) are off a little so he had IV's of potassium and his antiviral med and that takes 3 hours for those 2. His blood pressure has been up which is a side effect of the cyclosporin but now he's on BP med every day too. It's all to be expected but it takes time. Mom returns tonite, Tyler can't wait! It sounds like she and Grandma Jessie and Treba took care of everything and more at our house. It's ready for us and we are ready for it! We still don't know how long we will be here, we will stay as long as it takes. We miss everyone.

Wednesday, May 29, 2002 at 09:34 PM (CDT)

We spent today at the clinic from 9 to 2. Ty got platelets and antiviral meds. He is feeling a little better every day. The big news is that they did the DNA test on his blood and he's 100% graft!!!!! I've been waiting to hear how the test came out and we are so excited.
Elaine is going home tomorrow and we will miss her. Mom is coming back on friday and I definitely think I need someone here, my memory and my mind is not 100%. I need someone else here to help me remember things and keep me straight. Tyler is ready for her to come back, he wants to know how long it will be till she is here. We both miss Marc alot, we can't wait to get home and see him and Pa and the rest of the family and friends! HOpefully it won't be long.

Tuesday, May 28, 2002 at 08:42 PM (CDT)

Another day out of the hospital! We went to clinic from 8:30am to almost 2pm. Tyler had his blood drawn and recieved his antiviral meds which run over an hour and magnesium which runs over an hour also. The Magnesium is low due to the cyclosporin. He is still eating or should I say grazing all day long. We took him to the walking track by University Hospital today. Marc and I have been walking there almost every other day while Ty was in the hospital. The track also has picnic tables, sand volleyball and softball field. He really enjoyed it, the weather was warm but breezy. He got alot of exercise walking from the car to the park and back again. I did have to piggyback him on the return trip but he did great!! I think we will repeat that trip again tomorrow. Right now he has crashed in the bed after his bath. He's exhausted. It's been a busy, but good day for him. He is focusing on coming home. he says he wants to come home in 14 days. He says he wants to go to get chocolate ice cream and go to Grandma Jessie's house as soon as he gets home! We hope to be doing that real soon.

Monday, May 27, 2002 at 08:25 PM (CDT)

We cleaned out Tyler's room at the hospital this morning. Tyler wouldn't take his hat or his mask off while we were there, he was afraid that would mean he had to stay longer. He didn't want me to stop and talk to anyone either, he wanted OUT! He had pancakes, fish sticks, pop corn chicken from Kentucky Fried, cheese dip with chips and candy, oh and don't forget the Gatorade! We could be the poster kids for Gatorade. We drove to Boerne, a small town north of San Antonio and ate lunch at the park but the flies were driving Ty crazy. It's 8:30 and he's asleep, long day for him. Tomorrow we will go to clinic for the first time at 8:30am and probably be there for the morning. They will check his counts and give him anything that he needs, such as platelets there in clinic and then we are free for another day. He is feeling good and seems more himself everyday. It will take some time for him to regain his strength but with all he's eating, it won't be long! Check in with you tomorrow.....

Sunday, May 26, 2002 at 01:12 PM (CDT)

We just dropped Mom and Marc off at the airport. I think Marc is ready to get home, Mom really didn't want to go. Dr Grimley has let Tyler out for the night tonite. We only have to go back tomorrow to have blood drawn and clean out our stuff from the room! Do you believe it, he is finally getting out! Because of the holiday weekend we've had some problems getting our meds filled but we are ok till tuesday. He is only on Diflucan (antifungal), Prednisone (steroid) and Cyclosporine (antirejection). That's it! Pretty amazing. His sodium level was almost normal today, I think the 48oz of Gatorade that he consumed yesterday did the trick. His WBC count today was 5.1 (normal low range is 5.5)!! We are really getting there. We will go to the airport tonite and pick up my friend Elaine at about 7:30. We are looking forward to seeing her. Things are really looking good here. I can not say thank you enough for your prayers and many good thoughts coming our way!

Saturday, May 25, 2002 at 12:44 PM (CDT)

Tyler got out at 11am today, so we are at the hotel again. His sodium is low so we are pushing the chips and fries today with Gatorade. Dr Grimsley says that the meds he's on have effected his kidneys and they are excreting all the sodium, that this is temorary and will resolve once the meds are gone. Tomorrow Ty will need platelets so he probably won't get out as early. We will be taking Mom and Marc to the airport around 1pm. We hate to see Marc go but it's for the best and we will be home soon. My friend, Elaine is coming tomorrow and staying til thursday so we will have company and help while Mom is gone. It's counting down and we will be home soon, WE CAN'T WAIT!

5/24/02

Marc finally got to go to Six Flags today! third time IS a charm. We went on the log ride, and I got soaked not Marc. We also rode a wooden rollercoaster and I think we left our spleens and livers there, it jarred and jerked us to death! But we had fun. Tyler and Mom stayed at the hotel and Ty ate all afternoon. We came back to the hospital and he ate a butterfinger candy bar. Dr Wall says there is a possibility that we MIGHT get discharged this weekend, so they delivered our home health supplies and we are getting our home meds filled at the pharmacy just in case. We will still be coming in to the hospital for the antiviral med anyway so he will be checked over the weekend anyway. We will let you know how it goes.

Thursday, May 23, 2002 at 04:13 PM (CDT)

Tyler is out again and we are here at the hotel. We tried to go to another park that we found out about today, but Tyler's tummy was hurting so we didn't stay long. He is still eating well, last nite at 9 I was going to Chick fila for more nuggets. He won't be leaving the hospital until monday or tuesday, mainly because the antiviral meds he's on needs him to be well hydrated and they want to make sure he is since his drinking is better but still hit and miss. That way he won't have to be on any IV's once he's out of the hospital.
Tomorrow is Marc's day at Six Flags, third time is a charm, right?? He is needing some attention right now all to himself. I think it will be good for him to be home, play ball with his friends and be in familiar surroundings. Mom will be busy next week trying to get my house in order and get the carpeting etc cleaned, what a job!
Lots of bad news going around now, my grandmother's sister passed away this week and some other stuff here at the hospital and among people that we know. We are trying to keep our eyes focused on getting well and getting home. Thanks for your thoughts and prayers again, they mean so much, and so many have been answered.

Wednesday, May 22, 2002 at 04:47 PM (CDT)

Hello again, we are back at the hotel with Tyler and he has been eating non stop since we left the hospital at noon. He eats very tiny bites but if he works on it long enough he gets most of it down. If his tongue and mouth were in better shape he would be putting away some major groceries! His counts are up again today, and you can tell it by the way he looks and acts. We are hoping friday will be the day he gets out. He asked me today to show him on the calendar how many days it would be till he could get out. He is really looking forward to it now. The first thing he wanted today was chicken nuggets from Chick fila only, so we had to look up in the phone book and find one. He has been eating those ever since. Only with honey though! Gonna go, just another hour till he has to be back, Mom and Marc say "hi".

Tuesday, May 21, 2002 at 03:26 PM (CDT)

We are here at the hotel again this afternoon. Tyler has to be back by 5pm today for meds. He wanted to go to a park, but it was not easy to find one with swings etc, we drove all over the place! We did find one and we stopped but it was very dusty and we decided we didn't want to take the chance. He is eating today! Cheese dip and chips. Also, marshmellows out of the cereal and drinking some too. He actually said that he is hungry! He will be getting meds for the sores until probably friday so we might get out by then. We hope so! He definitely feels better today, his counts went from wbc 2.0 to 3.0 today. We are on the road now I think. Marc is doing well also, I think he's getting anxious to return to ball. It won't be long now. He has been a great big brother thru this whole ordeal. update you tomorrow

Monday, May 20, 2002 at 05:43 PM (CDT)

Hi again from the hotel! Tyler got out at noon and we will go back again at 6:30. If he continues to drink most importantly and eat then he can get out really soon. Dr Wall does not want to let him out with an IV if possible. He laid around the first part of the afternoon. He and Marc went outside and shot plastic darts at a target and we walked around the building. The weather is awesome right now! Tyler's WBC count is 2000 today, the most it has been. His mouth is still sore and especially in the corners but I think it's some better. The news continues to be good, talk to you tomorrow.

Sunday, May 19, 2002 at 04:05 PM (CDT)

Hi Everyone! Just had to write in and let everyone know that we are at the hotel with Tyler right now!! He really was irritable this morning at the hospital, everything made him cry or made him mad. We brought him here around 2pm and he immediately started looking thru the shelves at the food. He has had cereal, a taste of macaroni and cheese, some fruit snacks and Captain Crunch Cocoa Donuts cereal. We went outside and sprayed silly string in celebration. Right now he is laying on the bed watching cartoon network and coloring....what a change a few hours and a change of scenary can make!! Looks like we are on our way now, he needed this so much! We have to be back at the hospital at 6:30pm and then we can go out again tomorrow. Wanted to let everyone know asap. We are so very excited! I am going to try to upload new photos, so check those out.....

Sunday, May 19, 2002 at 04:05 PM (CDT)

Hi Everyone! Just had to write in and let everyone know that we are at the hotel with Tyler right now!! He really was irritable this morning at the hospital, everything made him cry or made him mad. We brought him here around 2pm and he immediately started looking thru the shelves at the food. He has had cereal, a taste of macaroni and cheese, some fruit snacks and Captain Crunch Cocoa Donuts cereal. We went outside and sprayed silly string in celebration. Right now he is laying on the bed watching cartoon network and coloring....what a change a few hours and a change of scenary can make!! Looks like we are on our way now, he needed this so much! We have to be back at the hospital at 6:30pm and then we can go out again tomorrow. Wanted to let everyone know asap. We are so very excited!

Saturday, May 18, 2002 at 10:39 AM (CDT)

Dr Wall says the tongue is healing nicely. Tyler had yogurt and a drink this morning, although it's only tiny baby swallows of yogurt. After some meds today they are going to disconnect his iv's and let him roam free without them for awhile, what a relief, no strings attached for awhile. Tomorrow he gets a pass out, we will probably come to the hotel or drive around. Maybe go by McDonald's!! He is feeling better, it's the excercise that he needs now. Build up those calf muscles that are looking really thin. We will check in tomorrow

Friday, May 17, 2002 at 04:52 PM (CDT)

Hi Everyone- Tyler is feeling better today, his mouth is starting to heal. He's been drinking a little and Dr Wall wanted him to try some yogurt today which he finally did. He kept it down fine and seemed to be able to swallow better. We did some school work and he's been playing Nintendo. We've got to keep it up to get out on Monday. We are seeing the light at then end of the in-hospital tunnel! Thanks for all your words of encouragement and support, we will need them still while we are staying in the hotel. take care, and we'll write more tomorrow.

Thursday, May 16, 2002 at 08:14 PM (CDT)

Marc and I tried for the second time to go to Six Flags today and again, it was closed. They have changed their schedule it seems, so we may try one more time before Marc comes home. We went to see Star Trek instead.
Tyler's mouth is getting better. We are hoping he will be able to drink more tomorrow and we might get a pass for this weekend. Because Tyler had chicken pox and shingles before, he has grown herpes on his tongue. With his counts being so low and his tongue being in that shape from chemo, these things take any oppurtunity. Dr Wall is switching him from acyclovir to something else that will take care of it.
He seems to be doing ok with it though, he hasn't needed any morphine for quite awhile. Like I have said before, he's a tough guy! We hope to be writing you guys from the hotel room next week!

Wednesday, May 15, 2002 at 10:32 PM (CDT)

Hi, today was a much better day than yesterday. Tyler's counts are up again and he spent the day up and playing Nintendo, doing school work and talking to Marc. His tongue looks some better, still awful, but better. Tomorrow we will start to push drinking again, he needs to start putting something in his stomach. Tonite he had some stomach pain and needed morphine again. We will see how that goes. Still, he is sleeping peacefully at the moment. We will pray for another great day tomorrow.

Tuesday, May 14, 2002 at 12:17 PM (CDT)

We are going 2 steps forward and 1 or 2 back. Tyler's counts are now 738 today, yesterday they were 480. Today is officially engraftment day since his counts are now above 500. yeah! Last nite the white layers that have been on Tyler's tongue sluffed off and that left raw raw bleeding tongue. No skin, just raw. He was screaming and crying and we went back to morphine. Dr Wall is alittle afraid that he could have a virus so they have cultured it today to see what grows. We won't know for several days. She has also upped his viral fighting meds plus if his counts keep going up that will help alot. His stomach is hurting as well so there's a chance the same thing is going on there. Needless to say, there is no way anything as far as food and drink are going down. He has not complained that much about it, it makes me want to cry to look at it. It is his entire tongue except the very tip. Dr Wall also had them mix a special mouthwash to numb it and make it more tolerable. So, as you can see we are happy and sad at the same time. He won't be coming to the hotel today, maybe in a few days from now. WE will be hoping that in a day or so this will be healed and he can continue on the road to healing. We are getting there, slowly but surely.

Monday, May 13, 2002 at 04:18 PM (CDT)

Hi everyone. Tyler's counts are up alittle again today. He is drinking some but still not eating. I got a look at this tongue today and after seeing it, I don't blame him I wouldn't eat either. It's trying to heal but it sluffs off first and that is what is happening now. It looks horrendous! He has been up doing school work and watching TV today. The smiles are coming more often. You really have to push him to get him to move around. Dr Wall feels he is needing a push, that he doesn't see an end to this, so we may get a pass tomorrow for a few hours to bring him here to the hotel. Hopefully this will make him want to get up and around and motivate him to help alittle more in his recovery. It's so hard for these guys, they don't have a grasp on time really yet and they can't understand that it's not gonna be forever. We will keep at it and hopefully have good news to report tomorrow.

Sunday, May 12, 2002 at 02:01 PM (CDT)

Tyler's counts are up today! What a great Mother's Day present! He seems to be feeling better also. His mouth is still sore, but if the counts keep going up that will heal quickly. And hopefully, he will want to eat soon. Tyler is sitting up in a chair and watching cartoons and laughing out loud once in awhile. We will get him up to walk later, he still fights it alittle. I am looking forward to him being out of the hospital so that he can get excercise without even thinking about it. We can also walk around the hotel, it's in a location where we don't have to worry about alot of traffice in the immediate area.
Happy Mother's Day to all those mothers who check in on Tyler today. We wish we could be home to celebrate with you! Soon though!

Saturday, May 11, 2002 at 07:02 PM (CDT)

Well, Marc and I tried to so to Fiesta Texas or Six Flags yesterday but when we got there it was open to school groups only! What a bummer! So, we went to the zoo instead. It was ok, it was good to be outside.
Tyler has slept most of the day. His blood pressure was up this morning and he had some hives with the platelets so after he had blood pressure meds and benadryl for the hives he went to sleep. I finally woke him up at 4pm. He has been up in the chair until a few minutes ago. He asked for some cheese pizza but when it came he couldn't eat it, but at least he is asking now, that's a step in the right direction.
Marc and Mom are flying home on the 26th of May. Mom and friends are going to have the carpets steam cleaned before we come home, which if things go well, maybe around the middle of June. The carpet cleaning needs to set and make sure it's dry for 2 weeks before we bring him into it. Grandma Jessie has already been helping out alot at the house. She's been taking care of animals and cleaning the frig, etc. What would we do without family and friends??!!

Friday, May 10, 2002 at 11:51 AM (CDT)

Tyler has had a rough morning today, but it's still the mucusitis. His stomach has not healed yet and after not eating or drinking for long we have to get it back in shape. He has been sitting up and playing Nintendo with Marc. Things are still on track, the more he's up the faster the counts will come in. I will be taking Marc to Six Flags this afternoon. I will let you know if we throw up more than Tyler! I will try to write more later today.

Thursday, May 09, 2002 at 04:23 PM (CDT)

Hi there! Tyler is still continuing to do well. His blood pressure has gone up a couple of times but they expect that from the cyclosporin that he is taking. After it is discontinued it will return to normal. He continues to get blood and platelets, again this is normal. He is acting more like himself and we see small things returning to normal everyday. I am going to try and take Marc to Six Flags tomorrow, it is so hot I hope we can stand it. We are thinking about all our friends and wishing we can return home real soon.

Wednesday, May 08, 2002 at 01:01 PM (CDT)

Hi! Tyler had a really good nite, he slept very peacefully. The first thing he said this morning was, " I want an orange drink", that's good to hear. His counts are still about the same, Dr Grimsley says that is to be expected. He says he is right at or a little ahead of schedule. His mouth is looking good, but his taste buds will be way off for quite awhile. We are getting him up often and walking him around the room. He is definitely making progress. MAYBE we can get out of the hospital the end of next week or a week from Monday. Yeah!! Today is day + 15!

Tuesday, May 07, 2002 at 10:42 PM (CDT)

Hi! Sorry to be signing on so late today. Tyler's counts are about the same today as yesterday. But, he has new red blood cells, so that is great. The platelets won't start coming in until about a month from now. Therefore, he recieved platelets today. They are weaning him off the fentanyl and the liquid food, hoping that he will get hungry. He is drinking alittle, which is good news. He has had a fever tonite so they are doing blood cultures, but it can be that he's producing more white cells or it can be from the platelets. Dr Wall is not alarmed.
Tyler and I both are grouchy, I think it's that a month is enough. Mom and Marc seem fine though, so I guess we better get over it! I can't wait till he can move to the hotel, at least then we can maybe get a full nites rest. Thank goodness Mom is here, we switch off nites at the hospital, if we didn't I would probably go crazy from lack of good sleep. This way we both are only half crazy and we can do that together! Keep praying for those blood cells and I will try to sign on earlier tomorrow.

Monday, May 06, 2002 at 04:03 PM (CDT)

Tyler's counts are up again today. His ANC (absolute neutrophil count) is 200. Dr Wall says that's great and his counts have gone up really fast. We are trying to get him up more, but he is fighting it. I think he's afraid that he will get sick to his stomach since that's what happened so many times before. His mouth sores are all but gone. He is drinking small sips now and we are trying to wean him off the liquid food alittle bit at a time. He got up today and did some school work at the desk. We will try to make this a routine from here on out, the more he moves around the better. We all feel very relieved that he's doing so well and the worst is over unless something unforseen happens. We still have to watch for GVH (graft vs host disease). Thanks for all your prayers , we feel that they are being answered every day.

Sunday, May 05, 2002 at 09:17 AM (CDT)

Hi everybody- Tyler is still doing well. He has the usual rash and he has been nauseated some. Counts went up again yesterday, so that is real. I am on my way over now, so I don't know yet what the counts are today. He has been playing cards with Missy and Marc. It helped having a new face for him to see. Marc is doing great considering all there is for him to do is go back and forth to the hospital. I hope to take him to Six Flags maybe this week as a reward for helping out so much. We are doing well, let you know more tonite. 4pm Tyler's counts are up again! He is feeling pretty well today, that should be getting better as the days go by. We are having to push him alittle to get him to get up and move around. Hopefully we will know soon an approx date that we will get out of the hospital, emphasis on approx.! Then we have another month in the hotel, but the change will do wonders for Ty. Talk to ya tomorrow.

Friday, May 03, 2002 at 02:30 PM (CDT)

WE HAVE WBC'S TODAY!! This is what we've been waiting on! The counts should go up fast from here. No estimate on how much longer in the hospital but now that his counts are going up, we know the graft is working. Going to pick up my sister at the airport, will try to write more later. Yeah!! Day+10.

Thursday, May 02, 2002 at 06:19 PM (CDT)

Hi everybody- Tyler is having another good day. He is more like himself today in that he is talking more. And he actually smiled several times! I haven't seen that smile in several weeks. He had another fever today but not since this morning. He continues to have rashes, again those go along with the graft trying to come in, a small amount of GVH. He's been getting out of bed with the physical therapist and walking around the room some. When I left a few minutes ago he was sleeping, with Grandma Carlene sitting right there staring at him. He can't move without her seeing it, so I know he's in the best hands! It seems no matter whether or not we get sleep, we are still tired. Guess it's the stress of waiting and watching. Things are going good, hopefully he will feel like eating some solid food soon. Today is Day+9

Wednesday, May 01, 2002 at 02:57 PM (CDT)

Hi again, Tyler is feeling pretty good today. He had a fever spike up this morning but it gone now. They drew blood cultures and he is already on antibiotics. He has alot of itching around his eyes, and the palms of his hands which is from graft vs host. We want some of it because it will kill any remaining leukemia cells but we don't want too much of it. It also means that his counts are right around the corner. We can look for them to start up any time. We will have a part then! There is another child from ACH that will be coming down for a transplant in June. He has the same type of leukemia as Tyler and is 6 years old. His website is www.caringbridge.com/ar/andrewtrevor. They will need words of encouragement as well. We need to keep them in our prayers. Day +8 almost over!

Tuesday, April 30, 2002 at 12:01 PM (CDT)

Tyler didn't rest well last nite, his stomach was bothering him. Hopefully in the next few days the sores will get better and that pain will go away. Still no counts to talk about today, we are holding our breath for those to rise. I will try to write more this pm after he's been awake for awhile, he may do alot of resting today due to lack of sleep. today is Day+7

Monday, April 29, 2002 at 02:12 PM (CDT)

Hi Everybody- sort of took the day off yesterday from writing. A friend from Sound Technologies came down and we went to eat lunch and shopped for awhile. It was really good to do the normal thing for a few hours.
Tyler is talking today. His mouth is better for sure, he let me clean it really well. He had a couple of swallows of apple sauce also. He had platelets last nite and that gave him a rash that kept him pretty miserable thru the nite. He is still itching today as well. They switched him from morphine to phentonal (spelling)thinking that will help as well. He is playing Nintendo with Marc and is alot more active than in the past few days. When we got him up for his shower we had him walk around the room to excercise his legs. They are looking very thin. But, when he starts to eat again hopefully he will put back on the weight that he's lost. We are hoping for some counts in the next few days. Believe me, you all will be informed right away when that happens! We are hopeful since the mouth sores are better. Dr Wall says he is doing "A++" This is day +6. See new pics under "photos"

Saturday, April 27, 2002 at 02:40 PM (CDT)

Today is much like yesterday, with the exception of the fever which started around 4 this am. It is to be expected with his counts so low, but it does not make him feel any better that's for sure! He is now getting Vancomycin in case of infection. He continues to get sick, the mucositis from the chemo has caused so many sores. We had to up his morphine dosage, but the Dr said he had started him off on a minimal dose so upping it would only put it in a normal range. He said that is to be expected also, the sores can continually cause pain. Pretty much, when he's awake he lies and watches TV or Marc play Nintendo. He doses now and then. Talking hurts too much. We will be getting him up in the shower and try to move him about some. He fights it but it's necessary. It's hard for us to see him like this and to watch him be sick so much but again, it's the normal pattern for a BMT. He is doing fine, we and he just have to endure this part and know he will be better soon. Everyone have a good weekend, we will try to have a boring one! Day +4

Friday, April 26, 2002 at 03:14 PM (CDT)

Remeber, boring is good. Today thankfully is pretty boring. He is still getting sick to his stomach, but the stuff that is there needs to come up since it's from the sores in his mouth and esophagus. The physical therapist got him up and played ball with him, he was telling her no every step of the way. He sat in a chair while I made his bed and then we got in the shower. That meant he was up out of the bed for close to an hour, which is good. He's now taking a nap. The Dr says he's doing great, he hasn't had a fever yet and usually they do just because their counts are low. He expects he will get one in the next 24 -48 hours. He also said that we should see improvement by day +8 or +9, which is next weds and thurs. He is on a continual drip of morphine but a very low dose, it does help in his overall comfort. The mouth care is the hardest, he just doesn't want you to bother it. I can't blame him! He had another great nite of sleep, that helps all of us !! We are taking it easy, the "dog days" will be over soon we hope!

Thursday, April 25, 2002 at 03:22 PM (CDT)

Check out the new photos today, the smiling boy you see was taken yesterday believe it or not. Today there are less smiles but he's doing ok. Blood pressure is up alittle, they say because of the volume of things he's getting. Otherwise, he recieved blood today along with the other manajerie of stuff. Physical Therapy came by and he got up and played ball with her, only because we made him do it. It is very important to work those leg muscles that have been lying still for several weeks. He had a great nite, slept the nite thru. We are going to keep Marc here probably thru the month of May. Tyler was very anxious when we were talking of Marc going home. He said he wants him to stay. We are planning on Marc coming home the first of June. He needs some normal time too. So far so good, Day +2.

Wednesday, April 24, 2002 at 10:44 PM (CDT)

Sorry, I am really late getting on today. It actually was a very good day for Tyler. He did have some nausea etc on and off most of the day, but they gave him some morphine for his mouth and esophageal sores and that helped alot. He started talking and playing more. He had a whole popsicle too! That's really the most he's had since last week. They started the TPN, or liquid nutrition tonite. Almost all kids have to have it because their appetites disappear and the sores make it too painful to eat. Again, he's getting a whole regimen of drugs too long to go into. The Dr says he's doing just fine, no problems. Dr Wall is gone to a conference where she is presenting a talk. She is getting a partner in a few months, Dr Grimley, he is here filling in.
Marc is doing well also. Tyler asked "Where is Marc??" first thing every morning. It's been a big help having him here, it keeps Tyler cheered up and gives him someone to play with. Marc has kept his work up to date, without any prompting from me. I think it's because he wants to stay. Well, all news is good from here today, hope tomorrow is the same. Remember, "boring is good!" Today is day +1. oh, one more thing that is really funny. Yesterday, Tyler asked me "why did that nurse give me all that medicine today??!! If she does that again, I am out of here!" It was hysterical, Mom and I cracked up. You know he's feeling better...

Tuesday, April 23, 2002 at 03:19 PM (CDT)

Hi Everyone! The transplant went great! Tyler slept right through it, no complications. Before he's blood type was A+, now his type will be O+. Strange thought huh? He had a great nite, he slept all nite long for the first time in a week. Hopefully,he will have several days of feeling well before the gets the blahs when he has no counts. Now we wait for the transplant to take hold and make cells. It's a very critical time, he is susceptable to any kind of infection etc. But we are going to do everything we can to prevent that from happening. Thanks again for your thoughts, prayers and well wishes. We look forward to reading those every day. Today is day "zero", from here to day 100 will be a count down. Day 100 will mark a milestone. August 1st. We will be looking forward.

Monday, April 22, 2002 at 08:58 PM (CDT)

Hi Everybody- Tyler is having a better day today. The rash is much better, it is a reaction to the ATG medication he was given and it's to be expected. Today he is hypersensitive to sound, we aren't sure why. He has had his fingers in his ears literally all day. Cottonballs, headphones, nothing that we can think of is as good as his fingers! So, other than that he is feeling good. He actually had some scrambled eggs and some jello and drank alittle this afternoon.
Tomorrow is the day! The transplant should take place anywhere from 11 to 12. It doesn't take long, from 1/2 hour to up to 2 hours depending upon the protocol. He is not going to be in surgery or even be put to sleep at all. It goes in just like a blood transfusion, so it is very painless for him. The worst of the whole ordeal will be the weeks following when he has no defense to infections etc. We have to wait for the stem cells to take hold and start to produce new cells, when that starts then he will begin to have protection. It varies in how long that can take, it may be quickly or it could take several weeks or more. Now we start the waiting game.
I will update the website as soon as I can tomorrow and let you know how everything goes. We are excited but anxious at the same time! Thanks for the prayers, we know there are so many people thinking of Tyler. We know how much those prayers can do!

Sunday, April 21, 2002 at 10:01 PM (CDT)

Well, today was the big "7th" Birthday!! Tyler was as excited as he could be. He was sick last nite and that continued today as well. He has a rash in several areas and that's making him irritable of course. He had fever with the new medication that he's taking, but that's to be expected. Nausea, rash, fever etc, all makes for a miserable child. But I took what pictures I could and will post those as soon as I can. Everyone here says hi to all those who visit this site. Please keep praying for us, just 2 days till transplant!

Saturday, April 20, 2002 at 11:06 AM (CDT)

Hi! Mom spent the nite with Tyer last nite so that I could get a good nite's sleep. She said that he was sick about every hour till 3 am but has been sleeping since. Dr Wall assured us that things are on track and they will continue to try and keep the nausea etc to a minimum, today and tomorrow are the last doses of chemo. He continues to play thru it and as long as he's lying down he feels pretty well.
Today we will do alot of present wrapping and pick up the cake. Tomorrow will be a big day for him, hopefully he will be feeling well. The presents should take his mind off the nausea for while. We are doing well, Marc is taking it all in stride. Dr Wall is arranging for him to practice some baseball with her son who is almost the same age. She's a great person besides being a wonderful doctor, we are in good hands. Keep us in your prayers as always.

Friday, April 19, 2002 at 05:25 PM (CDT)

It's friday so that means there is only 2 more days of Chemo, yeah!! Last nite was not so good, it seems Tyler is keeping up his reputation for doing some out of the ordinary stuff....he was sick most of the day yesterday and last nite he broke a vessel in his esophagus and was vomiting blood. Needless to say, it scared me to death. He has done better today, he has still been sick today but no more bleeding problems. I know it's gonna to be an up and down ride, Dr Wall is very encouraging though. The nurses are great, they are right there when you need them and they explain everything that they do. Tyler is a real trooper, he smiles through the whole ordeal. It's amazing what those little bodies can take!
We have bought out the local Wal-Mart for the big birthday bash. Do not worry that he will not have a great birthday, as far as presents go at least. I think Marc is looking forward to it almost as much as Tyler! We will take losts of pictures and put on the website.
We have had so many encouraging calls, emails and notes from people. We want everyone again to know how much it means to us that you are thinking and praying for Tyler and all of us!

Thursday, April 18, 2002 at 12:43 PM (CDT)

Hi Everybody! It's pretty muggy here today and it looks like it could rain anytime. Tyler had a much better nite, he went to sleep around 10! Yeah! He did get sick once but he felt better and slept the rest of the nite.
I can't believe that I forgot to tell everyone about what happened on tuesday this week! Shawn Elliott, who was a basketball player for the San Antonio Spurs was at the hospital doing a media event for the hospital. Shawn had a kidney transplant at one of the Methodist hospitals himself. Anyway, he came to the transplant ward and came in to see Tyler. I had come back to get cleaned up, but Mom says he came in with 5 police guards. He talked to Tyler and let them take pictures with him. After he left, he signed a basketball and Dr Wall decided to give it to Tyler since he has a birthday this weekend! Very exciting for Marc and Tyler both! Who believes I forgot to tell everyone??!!
Tyler is keeping the nurses laughing, mainly because he's so active. He's always on the go, non stop all day long. They say this energy is going to be a big help to him in the next weeks and months.
Looks like from the quest book we have lots of new friends, some in France and some in OKC.......thanks so much for signing in and for you good wishes!! We hope to hear from you again. Also, I am hoping to have new pictures here by tomorrow. talk to you soon.

Wednesday, April 17, 2002 at 11:18 AM (CDT)

Hi Everybody- Tyler is doing great, he's feeling well and playing like normal. He does seem to like to stay up late though, to the tune of 2am monday nite and 1 last nite. It doesn't seem to bother him, I think I'm the only one that it drives nuts. Dr Wall says she wants him to try and maintain a normal schedule which means wearing him out in the day so he will sleep at nite. Today he is schedules for physical therapy and more fun stuff. No more seizure problems to talk about thank goodness. That's about all to report, boring is good!

Tuesday, April 16, 2002 at 11:26 AM (CDT)

The weather is really nice here today, Marc and Mom are at the hospital with Tyler right now....Marc is playing Nintendo and Tyler was giving him orders when I left. Last nite was a long one, Tyler started acting alittle strange in the evening. He progressively got more hyper as the nite wore on. Usually at 9:30 or 10 I can shut off the lights and he will go to sleep within a few minutes and sleep soundly all nite. At 1am he was still awake and showed no signs he was tired. He fell asleep around 1:45 but then he started doing some strange movements in his sleep. The nurses and the Doctor feel that he was having a seizure which can be caused by the Busulfan. They are monitoring the Dilantin level closely and Dr Wall says she has other drugs she can use as well. It was alittle scary but at the same time not the same behavior you would think would be associated with a seizure but they can take on a wide variety of behaviors. This morning he is feeling great and back to his old self. Dr Wall likes to keep them on a schedule to make their life seem alittle more normal, we will be working on that the next few days. We hopefully will have set times for school work, medications, play time etc. He gets to have a big chart on the wall and stickers to put under each category as it's completed. I think this will work well for him and help us out too.
Tyler and Marc say "hi" again.

Monday, April 15, 2002 at 10:06 AM (CDT)

HI All- We are checked in and sort of settled in the Bone Marrow Transplant Unit. Unfortunately, I think we are in the smallest room, but that's ok.....as long as we are here and he gets the best care. They have a market place just outside the front door of the hospital, it has several fast food places, including McDonalds's and a Bath and Bodyworks store! McDonald's has already come in handy.
They started chemo this morning, Busulfan. It can cause seizures, so they started him on dilantin last nite which he will get every 6 hours at first. They will change his central line dressing everyday and mouth care which is extremely important. Now starts the waiting and watching and making sure he's as comfortable as he can be. Marc is there to play games with and that helps alot! It keeps things more normal for the both of them. We will let you know how the rest of the day goes. Thanks for your notes and encouragement, we enjoy those every day!

Sunday, April 14, 2002 at 03:26 PM (CDT)

Hi! Yesterday we drove north of San Antonio to a small town called Beorne (Bernie). It has alot of antique shops etc on main street and the wild flowers were in bloom alll along the highway. We saw a small square that was set up with arts and crafts, so we got out for awhile. the boys were able to go down the inflateable slide which kept them entertained for a few minutes! I actually ran into someone that I used to work with at Sound Technologies, small world!
Today we are preparing to go to the hospital. We will probably go over around 5pm. Tyler doesn't seem to mind at all, as long as the nintendo and game boy are packed! It's hard to think of things to keep them entertained and their minds off of the chemo. Last nite he wanted to know all the details about what would happen at the hospital, and when we could go home. The most important thing he wanted to know was when he could get his central line removed from his chest cause he wants to go swimming. I explained that it would be some time but hopefully sooner rather than later. It's hard to know what is the right thing to tell them at this age, but with him as probably most, they know if you aren't telling them the truth or only part of the truth. He does much better with the whole truthful story......I think I would too, you wouldn't trust someone who did any different.
Better go, Tyler and Marc say "HI"

Friday, April 12, 2002 at 06:57 PM (CDT)

Hi Everyone- We just got back to the hotel from Sea World and we are exhausted. But it's a good exhausted! The boys had a blast! It was worth it all to see Tyler's face watching the whales and the dolphins....he played for several hours on a gigantic robe-mesh play ground big enough for adults as well. He didn't want to leave of course. The weather was perfect and there were very few people so that made it all the more fun. Tyler got alot of excercise today for sure! Having Marc here makes a big difference in Tyler's attitude as well as Marc's. It seems to be the best thing to do for both of them. Gotta go rest! Thanks to everyone for keeping us in your prayers and thanks for signing the guestbook, it's brightens our days!

Thursday, April 11, 2002 at 07:21 PM (CDT)

Hey everybody! Today we went to the Children's Museum and spent several hours running like wild indians up and down the stairs from one exhibit to another with 2 classes of kids from area schools. Tyler had a blast, so did Marc! Then we went down to the Riverwalk and ate lunch, sat in the sun and relaxed for awhile. We went back to get the car to drive to the Tower of the Americas, and with me driving, of course we got lost. But not too bad.......eventually we made it. We went up and took pictures etc and spent another hour or so goofing off. Again, the weather was wonderful. We are cooking spaghetti in our miniature kitchen and are gonna eat outside on the bench under the trees. Marc and Tyler are having fun playing ball outside, at least there is some grass and a small are for them to play. No new medical news......bye for now!

Thursday, April 11, 2002 at 10:02 AM (CDT)

Yesterday we spent at the Alamo and the Riverwalk. The weather was perfect, about 72 degrees. We went to the Buckhorn Saloon and Museum yesterday also. They have a great museum of animals, dinosaurs etc that the kids really liked alot. Plus a couple of "unsavory charactors" in the saloon where we had lunch. The card shark there showed us some of his tricks which was pretty amazing, especially when we found out later that he is blind!
Here at the hotel last nite I met a woman whoes daughter had Non-Hodgkins Lymphoma in 1978. She is now 23 and has a son.....pretty amazing since her treatments were so long ago.
Today we will probably go to the Children's Museum or something along those lines. The boys are having a great time (but of course still arguing). I am trying to let them have as much excercise as they can stand to build up as much muscle as possible for Tyler. Being in bed so much will be a drain. More to come tomorrow....

Tuesday, April 09, 2002 at 09:41 PM (CDT)

Hi Everybody- Today was our first appointment at the Transplant/Infusion Clinic. We arrived around 8:30 (we were afraid we'd get lost!) It was a long day....Tyler had and EKG, Echocardiogram and CAT SCAN. They sedated him for the CT scan and he slept for 3 hours afterward in the post anesthesia unit. He finally woke up around 6pm. Unfortunately, the sedation has made him sick to his stomach but he's feeling better (and still playing Nintendo!)
We spoke with Dr Wall today which made all the difference in making us feel better about the situation. The cord blood is a 6 out of 6 match which is the best you can get. But what is also important is the number of cells in the cord blood sample and Dr Wall says that the number is huge! That is wonderful news! We saw 5 or 6 babies and small children, all of which are post transplant. Some only 25 days after transplant, all looked great and were doing wonderfully. One grandmother even told us the transplant was not nearly as bad as she had anticipated. We were very glad to hear that!
Tyler will be admitted on Sunday, chemo will start Monday morning. Chemo will go thru the 21st...Tyler's 7th Birthday!!.....the transplant will be April 23rd. We now have several days off the enjoy San Antonio and hopefully go to Six Flags and Sea World on Saturday. Fiesta Texas is April 19th thru ?? They say that is the hispanic Marde Gras....
Things are going well, Tyler says " hi "

Monday, April 08, 2002 at 10:03 PM (CDT)

Well, we have arrived in San Antonio! We drove all day yesterday in poring rain so today was great to have sunshine. Tyler is feeling great. We have an appt in the morning at the hospital, we should get some idea as to what the next steps will be after tomorrow. Marc is very excited to be here, I am glad we brought him along to spend some time. He has already been working on homework from school tonite, he doesn't want to get behind. Hopefully, more news tomorrow......

Tuesday, April 02, 2002 at 07:44 PM (CST)

Tyler is a very active, bright little boy who we love very much. He was diagnosed with AML on February 17th, 1998. After 6 months of intense chemo he has been in remission until January 18th of this year. He has spent the last 4 years playing baseball, learning to swim and going to school like every other normal child. Tyler has had 2 chemos since January. He has been in remission again since his first chemo and is feeling great. We will be leaving for San Antonio on Sunday April 6th, and will be seen there by the transplant Doctor on Tuesday the 8th. He will be recieving a cord blood transplant, but we don't know the exact date of that yet. We will keep you updated after we arrive in San Antonio. Please keep him in your prayers.

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