Click here to go back to the main page.

Sunday May 11, 2008 8:04 AM CDT

Such a long time between updates! stephen is doing great! He is finishing up the 5th grade! All scans have been clear and life is good! He is an honor roll student, loves baseball, football and basketball. We stay very busy! He will be performing in the Talent Show at Chisum at the end of this month. He is really excited about that! He is quite a ham!
We had a great day yesterday. The Special Sportsman Alliance (the same group that sent Stephen on the big hunting trip with Chipper Dipple a few years back) set up a fishing even with a local Elk Ranch owner here in Paris. Toby Yoder and his family and friends were so welcoming. We had a great time. We are looking forward to going back!
Savannah is in the 9th grade this year. She has her driving permit! EEEEKKK! What a great Mother's Day! Two healthy wonderful kids!

Saturday, August 12, 2006 12:04 AM CDT

WOW! Such a long time between updates! I guess no news is good news! Stephen had scans in March...all clear! We had a small scare when Children's called after the scans and told us that a spot had shown up on his chest xray...turned out to be a spot on the film or some such thing...crazy! He will not go back for regular scans until next March...
Stephen has been enjoying the summer...playing ball and taking it easy...he had caterac surgery several months ago...that went well...we were warned that due to the radiation he very possibly would have those...he is doing great after that. In the past month he has begun to have migrane headaches. We went to see a doctor here in Paris about that yesterday. He called Children's and talked to Stephen's oncologist about it. She wants to do an MRI that will show details of the blood vessels in his brain. That will be sometime in the next couple of weeks. School starts on Monday. The kids go to a different school than the one I teach at. I am so glad that we start at the same time! We went to Playa del Carmen, Mexico a couple of weeks ago...we had such a good time!
I will try to update soon about the MRI...have a great school year!

Saturday, November 19, 2005 6:43 AM CST

What a week! As you can see, Stephen is officially a hunter! Now he actually comes from a long line of hunters…not me mind you…but the rest of my family…even my MOTHER! Stephen has been going into the woods with his Papa to “help” bring in a downed deer since he was about 4 years old. But the event shown in the pictures here was a special event! Several months ago a lady named Brigid emailed me and told me that she would like to give Stephen a chance to go on a BIG hunt with professionals and film it to boot! I almost did not respond to the email…I am so glad that I did! I have included links to her website at the bottom of the page. She had organized the hunt with a wonderful couple named Chipper and Carolyn Dipple (website at bottom of page) and Stephen got the chance of a lifetime! He took along his backup crew…Papa and Dad….and away they went! Savannah and I had to stay behind…that’s all right…we had girl time! Stephen is quite a shot! Almost every time he shot his gun it was a bulls eye! The gun he used was owned by his great grandfather…he would have been so proud! The guys spent three fantastic days on this beautiful ranch. A great guy named Razor Dobbs filmed the event. I included a link to his sight as well. Stephen was so impressed with all of these people! The Dipples have two daughters. The youngest daughter Channing was able to spend a lot of time with Stephen. I think they played pool quite a bit! Stephen says that they were treated like kings! Apparently Carolyn is quite a cook! Stephen learned SO much! He has talked my ears off! I now know WAY more than I ever wanted to about DEER HUNTING!!! Stephens’s deer is a seven point…he is so proud! The meat is being processed as we speak and the deer head mounted! These great people are even taking care of the mounting for him! There are all new pictures in the photo album, be sure to look. Thank you to EVERYONE that made this trip possible! Stephen has made some great memories!
Thanksgiving is just around the corner. I have so much to be thankful for…during the holiday season, remember the families that lost children this year. Keep them in your prayers…Especially Eric's family…they have been on my mind so much lately.
Happy Thanksgiving Everyone!

Sunday, October 2, 2005 6:43 AM CDT

All is well!
Stephen had scans last month and of course they were clear! We plan to have his cateract taken care of during Thanksgiving or Christmas holidays. Basketball is about to start and he is excited about that! Stephen is getting a new teacher. His teacher from second grade moved up with them to third but her husband is being transfered so they are moving. His new teacher will be Mrs. Brandenburgh. She was the very FIRST person to sign his guestbook on this site two years ago! He is really excited about the change.
Savannah is doing well in middle school. She is playing volleyball this year.
I am enjoying my classroom! I love my kindergarten babies!
Most of you already know that Eric (link at the bottom of this page) ended his battle with Rhabdo. You might check his page and leave a positive note in his guestbook.
You know, it is really time that someone finds a cure for this mess!

Sunday, August 21, 2005 8:41 PM CDT

Well I am finally updating! All is well...we are just busy..busy...busy...
Stephen just finished his last game with the Boys club...they were undefeated...now he is playing football...against my better judgement...
He just started third grade...I suppose he is doing fine..who knows..trying to get something out of him is like pulling teeth! In the past I have always been at the same school that my kids go to...this year I am teaching Kindergarten at a school across town...I love it...but it is different not having the kids close.
Stephen has scans next month...I guess we will probably check on his cateract soon too. He does seem to be having some problem with his vision now. It was to be expected though.
Savannah is in the 7th grade. She is playing Volley Ball this year.
I need to get this crew in the bed...I have a feeling this is going to be a LONG week...
Until next time...

Monday, June 27, 2005 10:23 AM CDT

Well Stephen DID make All Stars!! They are doing really well…they won both games this weekend and they play again tonight and tomorrow…it is a double elimination tournament so we have to lose twice before being out of it. Stephen has been catcher some and he really likes that! The team has some great coaches as well…you can see more pictures in the album page.
Stephen was the ribbon cutter at Relay for Life on Friday. He was also on the front page of the Paris News helping to hold the sign as the survivors walked the Survivor Lap! We really had a great time! Thank you to all of you that donated in any way to Relay! Our family raised $240.00!

His checkup at Children’s week before last went really well. He had great counts and weighs 64 pounds!

Please check on our friend Eric (link at the bottom of this page) and offer some words of encouragement.

Stephen is still having some problems with the sinus thing though…nose bleeds and lots of coughing….hope that gets under control soon!

Sorry this is so short…I ran out of time…new pictures though! I will update again on Wednesday with the game results!!!

Go Paris Continental All Stars!!!!!

Sunday, June 12, 2005 7:22 AM CDT

Wow! I am just getting longer and longer between updates! Everything is going great though. Stephen has a checkup on Friday at Children’s and a check up with Dr. Graves on Monday. NO scans this time though…that is a little scary…we are going to every 6 months with just a check up every three.
Stephen will be going to camp Esparonza again this year! He is so excited! I think I will do better this year! He is hoping to have the same monitors this year. He really liked those guys. Savannah went to church camp last week in Lufkin. I am glad that she is back. I really like to have all of my ducks in a row…
Baseball ended FINALLY…. though there is some rumor that Stephen may play All-Stars…we will know that for sure on Monday night.
He has really come a long way…towards the end he really came alive (new pictures in the photo album) and started hitting the ball REALLY hard! He loves it! He got hit in the ribs during one game…with the ball…poor baby! He had a big round bruise from it…he was so proud of that bruise! He asked me NOT to come out on the field ANYMORE if he gets hurt…or if I THINK he is hurt…or if I think another player is going to hurt him…. or if I am upset with the coach…. or the assistant coach (Steve)…you get the picture…
We had Christmas in May around here…Papa and Dane gave the kids a new pool for an early Christmas present…the other one bit the dust…they have spent A LOT of time in it! That in and out thing drives me crazy though…I have started making them strip outside so that is cutting down on that some!
We went to the WOKC ambassador reunion last weekend…it was a lot of fun! The kids swam and played several games…Ambassadors from years past are invited and have a day of games and eating. Many of the doctors and nurses from Children’s were there. I get a little weird being around all of that …makes me have to remember…things I don’t want to remember! At least we actually MADE it to the reunion this year! Remember last year we had that horrible wreck on our way to the reunion!
Relay for Life is scheduled for June 24th and 25th. We are on a team that Chisum formed. Each team member is asked to raise $100.00. Anyone wanting to donate can send a check made out to Relay for Life and then just mail it or give it to me. My address is 10221 FM 38 N Sumner Tx. 75486. Man!! That date is sneaking up on us! I had better get busy! The event got rained out last year…so much work…Even if you are not on a team…come out that night and support Relay…it is so much fun and so touching…the survivor lap especially…I think that starts at six.
Well I had better get my family up and ready for church.
More later…

Monday, May 2, 2005 4:54 AM CDT

Good morning!
Not much going on right now…we are just busy…all the time! Stephen is enjoying baseball this year! He is really doing well. He is not having any problems with his hands this year!
School is almost out! We are all excited about that! It is not as hard as I thought with me working at a different school than the kids. Different…but not so bad. This job will be over in a couple of weeks though… I will really miss the kids…kindergarten…they are so funny! Then it will be back to beating the bushes…looking for a permanent job for next year.
Stephen spent the night with his friend Nick on Saturday night. He really enjoyed that. He is not having any problems with his sinus at the moment and he is really growing and gaining weight.
We will have a checkup at Children’s in June and scans in September. It will be odd to go and not have scans! He had a huge cavity that had to have a cap put on. Steve took him as I was working. He told Steve that when they gave him the “Spiderman gas” that he felt like he was doing flips in the air without his pants! He kept reaching down to feel if his pants were still on! HAHA!! I don’t think I ever had that response to gas!
Sorry about the short update..just not much to tell…
Keep Eric (link at bottom of this page) in your prayers. His new chemo schedule is really giving him fits.
Until next time…

Monday, March 21, 2005 5:17 AM CST

UPDATE MONDAY MARCH 28.
My friend Carolyn Ashford passed away Easter morning after a couragous battle with cancer. Thank you to all who sent a card to her during her illness.


I know it has been a while but honest….I have been SO busy!
Clear scans! Chest x-ray and CT are both clear. Stephen is now one year off treatment.
It is hard to believe! He will now start a new phase of follow-up. He will still go in to the clinic every three months but only for a check up. He will have scans every six months.
We had a long day on Friday. As usual, he went to oncology for his IV. That was all right. We went down to radiology for the usual LONG wait. We waited from around nine thirty until nearly TWO in the afternoon! Then the IV was no good. Had to get another. He was so good! He got a little red faced but did not cry or even move. He just sat in my lap. Then THAT vein blew…ANOTHER IV was started. I cried on that one. Stephen did not. He wanted to but he did not. We learned a new trick. He has never wanted to use cold spray. He had it the very first IV that he ever had at Children’s and he hated it. He hated that whole experience though. A less than kind nurse did it in radiology. That, on top of being totally freaked out equaled a bad experience with cold spray. He has always only used Emla or nothing. The nurse asked him if he wanted to try putting the cold spray on a cotton ball and putting it on himself. He tried it and it worked! So…forget getting to the clinic an hour early to get Emla put on! We will use cold spray! He did end up with SEVERAL prizes! Not only down in Radiology given by a new tech that is now his new best friend, but in the clinic as well…I think we ended up taking home like six different things! A prize for every poke and then some.
We have been actively selling green armbands from CureSearch. The kids at school love them. Adults as well. I just got my third box of 100 in the mail! I am putting the link at the bottom of this page.
Spring break is over. Back to school today. We stayed over in Dallas after scans. Met Carla and her family for dinner one night. Saw Robots at IMAX and Titanica as well…Stephen is into non-fiction…. and went to the Dallas Art Museum to view the mummy exhibit. Mrs. Hildreth (music and art teacher at Chisum) wants it known that the Art Museum was her idea…trying to score points with my boy as she is in the doghouse for telling him he could not use the heart graphic that was issued on Valentine’s Day to draw a less than sweet action figure (don’t ask) and telling him that he needed to go to the bathroom BEFORE he arrives at art class! The nerve! You are back in Mrs. Hildreth! He still loves you!
Cousin Kenny (wedding) brought Stephen a ukulele (had to use spell check for that) from Hawaii. Stephen loves that thing! He even wrote a song to play and sing with it.
I think that is about all…
Thanks to all of you that sent our friend Carolyn Ashford a card. She is really having a hard time. I will leave her address here for anyone that would like to continue to send her an encouraging word.
P.O. Box 863 Paris Texas 75461.

Saturday, February 5, 2005 7:27 AM CST

Busy…Busy…Busy…will things ever slow down??? I doubt it…
The wedding was beautiful. The drive to Houston was not so bad. The kid watched DVD’s and listened to CD’s. They had a great time swimming at the Hotel too. Stephen was quite handsome as the ring bearer. He loves to dress up.
Stephen is playing basketball this season. He really likes it. He is learning so much with this program. It is called “Upward Basketball” and is sponsored by a local church. They are great with the kids and we only have one practice and one game per week! That is the part I like.
Still having those nasty sinus infections. I guess that will just be a part of our lives. He just keeps going!
Stephen had a sleepover for his birthday on the 6th of Jan. The boys had a great time. They professed that they would stay up until midnight so I “helped” them with that by setting the clock up a couple of hours. They were asleep by ten and they thought they stayed up until their goal. I was happy and so were they. They were really good! They played football outside and played on the tree house. They spent a great deal of time on the play station though. I had to make them take turns. For the most part though, they worked it out them selves. Such a variety of personalities among those little boys. They blend really well though.
Our third grade at Chisum is holding a “Valentine Store” as a project and fundraiser. They will make, sell and deliver valentine packages within the school. Stephen brought home the order forms and told me that he would be buying Nick (best friend since kindergarten) a package to be delivered. I got tickled at the innocence of it all and asked him if there were a little girl that he would rather send one to instead. Now I should have known better than to do that to my EXTREMELY sensitive and insightful eight year old…he immediately knew that I had a hidden agenda….he wanted to know if he should NOT send something to a boy…why did I do that??? I told him it was fine and we certainly would send Nick a package! Adult minds are so crowded with CRAP that we forget how innocent that kids are…and should be!
Savannah has a birthday coming up on Feb. 26. She will be TWELVE years old. She is as tall as I am and looks (as you can tell) about 16 instead! Twelve years ago at this time I was laid up in Baylor hospital in Dallas awaiting the birth of my two pound thirteen ounce little girl. I was only twenty-eight weeks when she was born. She was perfect then and still is. I remember thinking how much prettier she was than the other babies in the PICU at Baylor. Now keep in mind that most of those kiddos weighed under a pound at birth…still…. she was prettier…think I might have a little grandiose thing going on? She has had NONE of the health problems that we were told that she might have. In fact I can probably count on one hand how many times she has even been to the doctor! As boys are being mentioned and feelings are getting more sensitive….arrrgghhhh…change the subject…
Carolyn Ashford…an assistant at the school who Stephen bonded with last year when she was diagnosed with breast cancer, has relapsed. Please keep her in your prayers. I have a mailing address for her. It is
P.O. Box 863 Paris Texas 75461
I know how great it was when Stephen was going through treatment to get cards from all over the country. The support was fantastic. Please let her know that you are friends of Stephen. I know that this will encourage her as she goes for round two with this monster. She has a wonderful outlook…if anyone can beat it she can.
Until next time…

Saturday, January 1, 2005 8:39 AM CST

HAPPY NEW YEAR!!! 2005 begins today…resolutions…fresh start…

A blank page. That is what we get on January 1. Every year. Or so it would seem.

We had a great Christmas! The kids got so much STUFF…it really is pitiful…they are still asleep right now so I thought I would update while I could think.

Stephen had his adenoids out on Monday as planned. We were at the Surgery Center here in Paris when the nurse came in and told him to take off everything except his underwear and his socks. He agreed but when she left he looked at me and said “Mom, we have a little problem here.” When I asked what that could be he informed me that he “forgot” to put on underwear!! I have no idea why…goofy kid…. they did let him wear his sweat pants into surgery thank goodness! I guess I will check next time…
He did really well with the surgery, He did get an infection later on this week..Oh my word…the SMELL!! I thought one of us had stepped in something! He is fine now. We really hope that removing his adenoids works as far as stopping the sinus infections. Dr. Erickson told us that it may not but he really did not want to do any more surgery at this point due to scar tissue and Stephen probably needing more surgery later on. If he still develops infections we will probably treat with medication. As he gains weight, (and he IS REALLY GAINING) I am really starting to notice how much deeper set his left eye than his right. When he had his scans a couple of weeks ago, Dr. Bash told us that it probably had less muscle mass due to the surgeries and radiation. That combined with just simply growing…I guess we will just wait and see what plays out.
The hair, as you can tell, is still growing! Aunt Doris Sue, I PROMISE it will be CUT before “The Wedding” on January 14th!!!! Stephen is going to be the ring bearer in Kenny and Brandy’s wedding (cousins that live in Houston) and does not need to look like one of the Beatles for that! Of course the last wedding he was in (Cody and Desiree) he wore a du-rag…
Stephen will be EIGHT YEARS OLD on January the 6th!! It is hard to believe that it has been EIGHT YEARS!! His birthday always sneaks up on us because it is so close to Christmas.

I guess that is it for now.
Please keep the family of Little Griffin in your prayers. I do not know as of this morning but yesterday he was preparing for heaven. We were finally able to meet Griffin and his family at the Children’s Medical Center Christmas Party on the 20th. He is such a cute little boy. No mother and father should ever have to go through this. Maybe 2005 will bring a CURE for childhood cancer....In Jesus Name!

Saturday, December 18, 2004 7:35 AM CST

I did it again!! Sorry…I am getting so bad about updating! Well here goes…lets see if I can backtrack and remember everything…
Most importantly…scans were yesterday…ALL CLEAR…we will not know about the chest x-ray until Monday…but the CT was clear…. of course….
Stephen is scheduled to have his adenoids removed on the 27th. It was canceled a couple of weeks ago due to his having a high fever for several days. He is having chronic sinus infections due to the radiation to his face. This is an expected side effect we are told.
The cast is off…hopefully he learned his lesson about hitting things.
We attended the ambassador Christmas party last weekend…WOKC presented the checks to Children’s Medical Center while we were there…one for seventy five thousand, one for sixty thousand and one for fifteen thousand….I told Stephen THAT is why he was an ambassador! The calendars were also given to the families…they are so neat! Stephen did the November page. This is a fundraiser for WOKC…if you would like to purchase one you can email Michelle Duca at mduca@wokc.org. She would be glad to help you. They are five dollars. The kids got several gifts and they were thrilled! The home that the party was held in was beautiful…the owners were so nice and Santa was a guest! This dude was EXTREMELY realistic…beard and all! I have pictures but they are not developed yet.
Scans yesterday were interesting…the SWAT team from Dallas came to the HEM/ONC clinic. They were dressed in full garb. Stephen and I were sitting in a room waiting for the Doctor, he opened to door to go to the bathroom and shut it quickly. I asked him what the problem was…he just said…I will wait! I opened the door and looked out to see about 40 SWAT team members as well as Spiderman! He did go out and he was given a SWAT team shirt and cap as well as a “secret” coin that only SWAT team members carry…it signifies a “brotherhood” if you will. He was told that this was a special coin and not to tell that he had it…he was so excited!! The only problem is that his “secret” did not last long…he spilled his guts to the lady in Mervyns before we ever left Dallas!! OH well…
Back to scans…for the first time, the emla cream worked really well on his hand. It was completely numb. Nurse Debbie stuck him and would you believe that the vein blew…they had to use the other hand with NO emla. He did so well…he was very proud of himself! His counts were great. He had to do a urine specimen this time and that did not go over very well! We were told to get a hearing test in the next couple of weeks. Dr. Bash stated that if a hearing loss due to the chemo were going to show up, now would be the time for that to happen. I guess we can get that done during our many trips to the ENT.

Stephen is also playing basketball. He has had two practices and loves it! He has a really good coach too! He is looking forward to playing his first game in January.
Christmas is upon us! I am ALMOST ready! I think..
As we celebrate with our families and remember what this season is about…keep those families in mind that will be getting through this holiday for the first time without their child. I cannot imagine that pain. We are so blessed to have such a happy ending to this “happening” in our lives. Hug your kids (I am saying this for my OWN benefit as well) and spend a little extra time with them during this holiday.

Sunday, November 21, 2004 6:12 AM CST

Wow! Has it been over a month! I do not usually go that long without updating!
Everything is fine here. We are just staying very busy. We did have to go back to the ENT. Stephen had another sinus infection. The doctor plans to remove his adenoids on Dec. 3rd. He feels like that may help some. The cilia that we have to flush out mucus in our nose are gone in Stephens nose. He sinus are staying full and causing lots of pressure and infection. He is not too happy about surgery. OH….I have not posted that he also has an BROKEN HAND! The little turkey had a fit a couple of weeks ago. He got mad at the Playstation and turned around and hit the footstool with his fist! He has a boxers fracture. So here he is with a cast on his hand (thank goodness it was his right hand, he is left handed) and having surgery on his face! Bad choices!

Thanksgiving week brings many opportunities to give thanks. We are so blessed. I am ending my year of student teaching in a couple of weeks. I will graduate from college on Dec. 18. I cannot believe that it is actually here! I think back now on the past couple of years and I see that even though it was extremely stressful to go to college full time and have a family, I think it is what kept me sane during Stephens illness. I had opportunity to meet so many people that have become a intricate part of our lives, people that I would have never met if I had not been in college. For that I am thankful. I will be actively searching for a job now. I am hoping that something will come up after Christmas. Sometimes school districts have turnover after Christmas so maybe….but if not I just plan to sub like I always have until something happens. I do not plan to uproot Stephen and Savannah from Chisum and that is the only district I have ever worked for. Maybe something will come up there. Who knows? If not, God has a plan for me and it will work out.

Savannah participated in UIL again this year. She won third in Music Memory and third in Listening Skills. She has adapted well to middle school. How scary…I have a daughter in middle school…

It would seem that our friend from Dallas, James
is doing really well after his surgery to remove his tumor (Ewings Sarcoma). I know that most of you heard that Connor,
(rhabdomyosarcoma) passed away earlier this month. The day after his tenth birthday. Eric
and Dustin
continue treatment for that nasty rhabdo as well. Please visit these sites and offer a word of encouragement in the guestbooks during this season of Thanksgiving.

Stephen will go sometime around Christmas for his scans. As usual, everything will turn out great. Happy Thanksgiving to everyone and Iwill post more often….now that college is out of the way….whatever shall I do with ALL of my free time……

Monday, October 18, 2004 5:05 AM CDT

Sorry I have been so lax in updating. Things are going really well. Stephen went to the ENT and we found out that it is not the bone in his face compressing his airway. The Doctor said that the problem is common with people that have had radiation to the face. What ever it is that flushes out mucus and bacteria is fried by the radiation. Behind his adenoids is just a breeding ground for bacteria. He had an extremely bad sinus infection. The Doctor was surprised that he did not complain more. He told us that Stephen would probably end up having surgery on his sinus’ to alleviate this problem. We also found out that we were sent to him to look for rhabdo in the sinus! Freaked me out! I tried to argue with the doc, telling him that Stephen had clear scans. He showed the order from oncology to me. It seems that the only way to see early developing tumor in the sinus is to use the camera that goes up into the nose! Scans could miss it! Stephen is tolerating the anti-biotics and nose spray well. He says he can tell a difference right away when he uses it.
We have three new puppies (living in my closet) as of Oct. 2nd! They are really cute! Well not really but that is what you are supposed to say. Tia, (Savannah’s Chihuahua) had them about four in the morning. The kids are thrilled. I will post a picture in the next few days. I just have time this morning to make a quick update.
Be sure to check Connor Hunley’s site. He has begun Hospice and is in need of prayer and words of encouragement. You can find the link in our journal history. I will repost links later. This is all I have time for now. I will do a complete update later this week.

Friday, October 1, 2004 8:00 AM CDT

Sorry that I am just now updating. Stephen had clear scans of course! His counts were great too. He is going to be going to an Ear, nose and throat doctor in the next couple of weeks. He is having a lot of trouble breathing out of the right side of his nose. This is the side that received radiation. The bone is apparently not growing and is causing the airway to be compressed. This is minor compared to what COULD have been blocking his airway…

Thank you again to all of you that supported Stephen in his fund raising efforts for WOKC.

I will update later when we go see the ENT.

Sunday, September 19, 2004 9:01 PM CDT

I have missed a couple of weeks posting. Guess I had better catch up!
First of all, I know that most of you are aware that Sweet Trever ended his battle with Rhabdomyosarcoma. While his family is relieved that he is no longer so sick…they grieve as anyone would. Please stop by and visit the guest book.

Stephen raised $640.00 for Wipe Out Kids Cancer!!! He won third place in the fundraiser! We only started a week before the Fun Run was scheduled…. thought we did pretty well!! Thank you so much everyone that donated. Stephen was so excited to tell the WOKC coordinator the amount he had! We walked the mile with a HUGE crowd of people! I think they said that about 2,600 people had signed up to run either the fun run or the 5K. All together it was about 2,600. Eddie Coker performed after the run. He is quite funny! We all enjoyed him! Then a wonderful thing happened! We finally met James! We have been following him on his site because he is from the Dallas area. I saw this cute little bald kid and thought…”Hmm…he looks familiar.” I looked at a child standing close to him and she had on a t-shirt that said Jammin James…and something about friends fighting for a cure…I KNEW it had to be the same James. I met his mom, dad and sweet little sister…he and Stephen hit it off…they ran and played for a long time. James’ dad even got to go on stage and (ahem) dance (I used that term loosely) with Eddie Coker..(sorry Mike..it had to be told) while his wife cringed HAHA! The kids all received free passes to the carnival that was at the Oktoberfest. We went over to it at 11:00. James, Stephen and Savannah rode rides together…it was so hot but the kids had a great time. We plan to get the kids together again soon. James has an old soul…just like every other kid with cancer that I have met. It doesn’t matter if they were just diagnosed or have been doing this for years..they all seem wise beyond their years. We wish him well and shower him with prayers as he goes into the hospital this Thursday for his next round of chemo. Surgery is expected in October.

Stephen has scans on Friday of this week. He is mad at me for reminding him of that. He hates the IV. I don’t blame him…I would hate it too.
By the way…I FINALLY drove to Dallas! I did really well! Of course it was around seven on Saturday morning…. but the point is…I DID IT!!

I put new pictures in the photo album…some from Labor Day. They are pretty cute.

Be sure to keep our friends in your thought and prayers.
Weston
Peyton
Dustin
and Connor who is recovering from an extremely invasive surgery.

Eric
continues to fight a Rhabdo relapse. Stop by and sign his guest book.


Thank you again all of you that donated to Wipe Out Kids Cancer…
When we started the fund raiser Stephen was trying to make sense of it all…he said “Ok, now what we do is get people to give money and the money is used to find a cure for cancer right?” I said that was true…then he broke my heart by saying “So that means when we give the money to WOKC, no other kids are going to get cancer.”
All I could answer was ..Someday baby…someday…

Sunday, September 5, 2004 4:46 PM CDT

*UPDATE* Sept. 11
As an Ambassador for WOKC (www.wokc.org), Stephen and I are going to participate in the "Fun Run" in Addison Tx on Sept. 18th. Funds raised go to support WOKC. The mission of WOKC is stated on the above site. The "Fun Run" is in conjunction with the Oktoberfest that is held every year. I set up a site so that donations can be made online if you choose. Just go to http://www.active.com/donate/wokcfunrun/stephenrhodes to do that. Sorry, I could not get the link to work within this site so you will have to type the above site in or copy and past it into your browser. I will include the link at the bottom of this page as well if you want to scroll down and use it. If you would like to donate in person or by mail just email me and I give you that info. If you would like actually participate (walk/run one mile) in the event let me know or you can register online. Just go to the WOKC site to do that. We set our person fundraising goal at $500.00 but I am sure we can exceed that.


We had a great time at the Ranger game last weekend. Several friends and family members came with us. Michael Young and his wife gave each child a sack full of stuff and he signed a hat and a ball for them too. I tried to get a picture of the Jumbo-tron but it did not turn out.
We were all a nervous wreck after the drive to Dallas. I hope that changes soon. I started driving everywhere when I was 16 and now I freak out…but Steve does too…so I guess it isn’t just me.
I took the picture of the wrecked car off to make room for the Ranger game pictures. They are more fun anyway.
Darrell Scott, father of Rachel Scott one of the children that were murdered at Columbine High school in Colorado several years ago, spoke at our church last night. He will be there tonight as well. I do not know how that man can relive that event time after time. His message is a powerful one. If you ever get a chance to hear him please do. I learned so many things about our countries founding fathers. Things about our constitution...click on the links above to learn more about this.
I am looking forward to a day off tomorrow. I was going to lay down this afternoon for a few minutes and ended up sleeping until 4:30! I never do that. I guess I am tired. I am going to let Stephen stay home tonight. As much as he dwells on things, I am afraid the Rachel Scott story would do him in. I did not take him last night either.
We go for scans on the 24th. Everything is set. He hates to miss school. There isn’t anyway around that though. We all missed week before last due to a virus so he shot his perfect attendance anyway.
We are going to go to the lake tomorrow afternoon and cook hamburgers with Dane and Papa. I plan to do very little before that. VERY little.
Happy Labor Day everyone!
PS. Please remember our friends that continue to fight.
Dustin
Weston
Peyton
Connor
Trever who needs a miracle
and James who has just been diagnosed with Ewings Sarcoma. He is from the Dallas area.



Of course remember Eric who is in the links below. Trevor is having a really rough time. His grandfather just updated the journal.

Tuesday, August 24, 2004 10:43 AM CDT

Not much going on around here. School has started and all seems to be going well. The above is a picture of the first day of school. I think I need a new scanner! Savannah likes middle school and Stephen seems to be enjoying second grade. We have all been sick with a virus so the kids missed yesterday. I put a pic of the wrecked car in the photo album. It actually does not look as bad I thought it would. We are all doing better…except Steve. He will be having surgery soon on his neck. Like he needed something else wrong with is spine (several back surgeries due to a work injury several years ago).
We have Stephen’s second set of scans set for the 24th of Sept. Time is sure flying by!
I guess most of you already know that Jessica Gilpin passed away last Monday. She is the seventeen-year-old girl that lived in the Dallas area but her family was originally from Paris. Many of you donated to the fund that allowed her to get a bone marrow transplant. Please keep her family in your prayers.
Dustin is progressing in his treatment plan and could use some words of encouragement.
Little Weston is having a few problems as well…he is a fellow Children’s Medical Center patient and is a cutie!
We are so busy and it is hard to believe that anything was ever wrong with Stephen! He is doing so well. This year is going to be much different than last year. He is still having problems sleeping and we think it is due to the wreck. All I know is that he MUST be tired as many times as he runs back and forth from his room to ours! Sometimes he wants to sleep with us and sometimes he wants to be tucked back into his own bed. That is fine but 5 and 6 times a night gets pretty old! It will get better I am sure…everything else has..
Until next time…

Saturday, August 7, 2004 7:50 AM CDT

The past week has been more eventful than any of us would have liked. Steve, Stephen and I were on our way to Plano on Monday evening to one of Stephens’s ambassador events. It was a pool party at Brookhaven Country Club. As we came into Allen a little black VW tried to change lanes and realized at the last minute that another car was in the way. She overcorrected as she jerked back to the right, and then jerked back to the left, which sent her spinning into us. She clipped the back of our car (actually my grandmothers Ford Explorer) and we spun around to face the opposite direction ( at 5:30 in the afternoon on 75) and then began to roll over and over. We landed in the median of Frontage Road Exit. We are all doing well. Stephen only sustained a cut to his knee. Thank God. Steve has a herniated disk in his neck and he was literally scalped by the road when his head came through the windshield. Various bruises, bumps and cuts. I was driving so I have a big bruise from the steering wheel and I guess it jerked my right arm because it hurt my shoulder, neck and back on the right side. I just remember the glass coming at my face. I had a lot of it in my mouth. The people that came up right after said they could not believe that we had made it though that. I still cannot believe that it happened. I just wanted to get to Stephen and he had crawled out of the back end. He was ok, just scared. They took us by ambulance to a Plano hospital and we were in the ER until around five in the morning. Savannah had stayed with my grandmother so we were thankful for that. I asked the paramedic if the people in the other car were all right. He told me that it was a young woman and she was fine. She never came to see if we were ok and she would not give the police a statement. She told them that she needed to see her lawyer first! So much for humanity!
It is Saturday morning and we have YET to get the girls insurance company to call us back! We have a claim number it is just that the adjuster will not return my call or the call of our adjuster! It is the SAME company so you would think they could work together! This is my first dealing with something like this, hopefully the last!
I would like to talk to the witnesses that were there. I may call the police station to see if they have names or not.
Once again, God has had His hand on our lives.
I think it may take a little time to recover from this one. Stephen is not sleeping at night and constantly asks what time it is. He does not want it to be nighttime. So if STEPHEN doesn’t sleep…. NOBODY does! I hope that this will get better with time. I am still nervous about driving. I just don’t want to yet. I will…just not today.
Oh…Stephen just had to have something cute to say even during that crazy time…as we rolled over and over, I was saying “In Jesus name…In Jesus name”. Stephen told me later that if I had just prayed quietly in my head I would not have glass in my mouth! The little turkey! This little Pentecostal boy is unique in that he is not for praying out loud…just quietly! I told him that I thought under the circumstances I needed to be as LOUD as possible! He can be so funny! In fact while people were calling the Plano hospital, he was taking the calls! Steve and I were not able to get up and he was. Our pastor even called the pastors wife of the Plano United Pentecostal Church (Sis. Rigdon) and she came and stayed pretty much the whole time we were in the ER. Stephen did loose a shoe but we found it when we went back to the car a couple of days later (or Steve did) along with my purse that had been strewn along 75. Everything was still in it except the money which was NOT zipped in so it could have flown out.
Somehow my friend Carla Graham ended up calling my cell phone during all of the hullabaloo and the paramedic told her what had happened and which hospital they were taking us to. Poor Carla. She had to figure out who to call and that proved to be quite a task. I think all of Paris was involved in locating my parents. She even ended up coming to Plano with her husband and they went to Burger king (McDonalds was close but he did NOT want that) and getting Stephen some supper. My mom and Jesse were finally able to take us home and I was never so glad to be home! All those months of driving back and forth to Dallas for chemo and never so much as a speeding ticket. You never know!
I will stop rambling now…we are going to be ok…Thank you Jesus.
P.S. There is a new kid in town...Embryonal Rhabdomyosarcoma of the orbit town that is...his name is Dustin
and he is a cutie! Visit his page and offer his family some support!!!

Saturday, July 24, 2004 5:42 PM CDT

NEW PICS IN THE PHOTO ALBUM

Well my boy is back from camp! I have never been so glad for a week to end! He had a wonderful time! I sent him with 8 sets of clothes. Underwear, shirts and shorts. He came home with SIX sets of CLEAN clothes! Apparently he wore the SAME shirt for FOUR days! He slept in it and wore it again that next morning and so on…
He STUNK but we were glad to have him back anyway! He said that they swam every day so he did not feel the need to bathe. He took ONE shower and that was on MONDAY night! None of my towels came home…as he did not even use them I don’t know why he could not have brought them back! He learned to play chess…he loved that…he talked the whole way home! I think he was happy to be in his own bed though. He did have one minor situation on the first night. I am guessing he woke up during the night and was disoriented. He thought his sleeping bag had a face on it and he thought he was in the wrong cabin! Then he went OUTSIDE! That worries me a little… but came back in and woke up one of the counselors who assured him that indeed he was in the correct cabin and agreed that the sleeping bag looked like a face. He cried some but went back to sleep. I don’t think he had any more problems like that the rest of the time. They swam everyday and he really enjoyed that part. I think it will take him a while to tell it all to us!
He has really gained weight too! He weighs a little over 55 pounds. That means he has gained about 8 pounds since school let out! He looks great!
It appears that little Trever is about to enter the Gates of Heaven. It is hard to believe that with all of the medical technology that we have now that a cure could not be found for that baby.
Connor And his family need prayer and support also. He will go soon for another scan to see if his cancer is responding to treatment.
I was able to meet Weston and his mother Sherri on Friday while we were at Children’s. Well I say I met him…I watched him sleep fitfully. Bless his heart. That sweet little bald head…
Not much else going on around here. We are just trying to pretend that school is not about to start again….
Until next time…

Sunday, July 18, 2004 9:18 PM CDT

QUICK UPDATE:
See the information on CampJohnMarc, the facility that is hosting the camp Stephen is attending this week.




WOW! We have really been busy the past couple of weeks! We went to Dallas for a couple of days and the kids really had fun. We went to a water park in North Richland Hills called NRH20 and the kid loved that! I think they liked swimming in the pool at the hotel just as much!
We used our passes from Give kids the world village to go to Celebration Station and Ripley’s Believe it or Not and the Wax Museum. They enjoyed that too.
Today I did one of the hardest things I have ever done…I put my boy on a bus to camp. It nearly killed me! I miss him terribly already. I know he is having so much fun! He hardly had time to tell us good-by because he was so anxious to get on the bus. One funny story…While we were waiting to get registered a VERY large man was waiting with his family to get his daughter registered too. I noticed that several children would come up to him (and adults as well) and ask to take a picture with him. Steve thought he recognized him and asked someone who it was. Well it was Charles Haley former player for the Dallas Cowboys and also the 49’ers (sorry football fans I know I am butchering the football lingo here) who is now a coach for the Detroit Lions. He is the only player in history to have FIVE world championship rings! It seems that his daughter has leukemia (I think she is in remission) and she was going to camp. Steve told Stephen who he was and what he had accomplished. Stephen went over to him to take a picture with him. Mr. Haley was very kind and bent down to talk to Stephen for a minute before I took the picture. When he came back to me I asked him what he had talked about. Stephen told me that he had asked Mr. Haley if he had ever met Ricky Williams!!!! I hope the poor man was not offended!! We laughed so hard! I asked Stephen what he said and he told me that Mr. Haley said that yes he had met him…I am sure that is not the first odd question that he has had! I do have pictures but they are not developed yet.
I don’t know how I am going to make it this whole week! I know he is fine…it is just hard…he is just SEVEN!!
Happy birthday to Nanny Nelda and to my brother Joe!
If anyone has any information on the organization that Kenny Chesney (sp) has that is called Kenny’s Angels or something like that please email that info to me. I have a little cousin that is 3 years old and she has Cystic Fibrosis. She is a HUGE fan (really, she knows all the words to all of his songs!). I know that his organization sent tickets to some of the children that I met at the RMH in Dallas and did some special things for them.
I have included the sites of some other kids with Rhabdo that need ugent prayer at the bottom of this page. I now have the code (thanks Marni) to make their names a link within this page but I keep messing it up! I will try again tomorrow to make that work so in the mean time please use the links at the bottom of this page to visit these sites and post in the guest books.

Monday, July 5, 2004 6:20 AM CDT

As I posted…scans were great! Stephen did really well during the test. The emala cream did not work for some reason so he felt the needle for the IV. That made him unhappy but he still did not move. She got it on the first stick. Carla went with us and he even invited her in for the bone scan. The three of us played a rousing game of candyland and then he and Kristen played battleship together (child life specialist) and he claims that they had a tie…how exactly do you do that?
Stephen is still planning to go to camp on the 18th…oh dear…
We have really enjoyed a few days of just doing nothing…Steve did take the kids to see the new Spiderman and Stephens friend Matthew spent the night once. They had a really good time.
On Saturday, Steve’s grandsons spent the night and we popped fireworks until after ten. They had a lot of fun. Then last night we went down to Maxey, about two miles from us, and enjoyed the fireworks show and hotdogs put on by the Maxey Baptist Church. It was really good!
Oh…and Stephens blood work was great also…can you tell it is super early in the morning…I sound like a robot…
So much relapse in the Rhabdo world…four of the kid’s that I keep up with on caringbridge have relapsed in the past month or so…one has already gone to heaven…little Ian…I have his link at the bottom of this page. The others are:

http://www.caringBridge.com/tn/connorhunley

http://www.caringbridge.org/mn/ericdakota/

http://www.caringbridge.org/ca/treverpeck/

Please go to these sites and post in the guest book. It means a lot to parents to know that they have support and prayer.
There are two types of Rhabdomyosarcoma. Alveolar and Embryonal. Stephen has the less aggressive type of Embryonal. Connor and Eric have the more aggressive type of Alveolar. The chance of relapse are greater in the Alveolar and once relapse occurs the chances of recovering are less than fifteen percent, says the medical world. God can intervene on behalf of these kids…in spite of the numbers. Interestingly, Trever has the same type as Stephen. His was located in his sinus cavity making the tumor inoperable, thus increasing the chance of relapse.
These parents are living my worst fear…please pray for them. I know…I know. God has not giving me the Spirit of fear…I am working on that!
Please support your local Relay for Life events and any other legitimate organization that is searching for a cure for cancer.

PS New pictures in photo album.
Also,I have not figured out how to make the above kids links "clickable" yet so just copy and paste them into your address bar.

Saturday, June 26, 2004 3:12 PM CDT

UPDATE: Monday the 28th

Scans results:
Chest x-ray: ALL CLEAR
CT of head and orbits:ALL CLEAR
Bone Scan: ALL CLEAR
God Is Good!!!!

Happy Birthday Dane!


Sadly, Relay was rained out last night...I know how hard the comittee worked all year to get it together...The survivors were still able to walk their lap and many team members walked even after the downpour started! I am sure that a large amount of money was still raised although much more would have been if the weather had held. I am posting the speech that I was supposed to give below:



What a difference a year makes, last year at Relay for Life, my son Stephen walked the survivors lap pale, bald and nauseous as he had recently been diagnosed with a rare form of childhood cancer called Rhabdomyosarcoma. Stephen, unlike many others whom we have come into contact with over the past year, is a SURVIVOR, and will walk that survivor’s lap again…
. In April of 2003, we were looking forward to Stephen's Kindergarten graduation, one of the many milestones we all are proud of our children for achieving. However, unbeknown to anyone here on earth, we were about to be faced with one of life's worst fears. A malformation had begun to develop in Stephen's left eye and grew very quickly. The thought of anything serious never entered my mind, or did it? As I have reflected on it many times the past year, I am not so sure…I think on some level I may have known something bad was wrong...I just could not comprehend it or I suppressed those thoughts quickly upon them entering my mind. He had a swollen eye--possibly an infection of the tear duct, a sty.... we all know the norms it could be anything, but nothing serious. But On the afternoon of April 19th while sitting in the dr's office we heard words that no parent ever plans to hear…. your child has cancer. After that afternoon at the doctor's office Things began to happen so quickly. The next week Stephen had surgery to remove the tumor followed by a second surgery to insert the port a cath that would be used to administer the chemo. Less than two weeks after the initial diagnosis, my child was being injected with poison to fight this monster that had come to live among us. . For weeks we made the trip every Friday to Children’s for treatment. Last July was spent mainly at the Ronald McDonald house for his 4-week stint of radiation. In comparison to others with the same prognosis/diagnosis Stephen did very well with treatment. We encountered the expected such as nausea, anemia, etc. and the unexpected of all things, reactions to mosquito bites due to chemo and how do you avoid mosquitoes during the summertime, in north east Texas no less...there were a few major problems that occurred during Stephen’s treatment one of them being a bowel obstruction that is a known side effect of the Vinecristine, which was part of the chemo regimen. In March Stephen had his last treatment and his port removed on Good Friday in April. His end of treatment scans were clear and he will now have scans every three months for two years then once a year there after. His next scan will be on Monday. I guess I will always have a certain amount of anxiety around scan time but deep down I know that he will be all right.
We met so many different people, made many new friends, went places that we had never been before. Make-a-Wish sent us to Disney World, friends and family held a benefit variety show here in Paris for us and so many people that we have never even met helped us both financially as well as emotionally this past year. Every time I turned around someone else was handing me a card or sending Stephen as well as Savannah gifts. All of this aided our family in facing another day.
I have learned so much this past year. Most of all I have learned to be my child’s advocate. For those who know me you probably think that sounds strange coming from me. I have never been one to mince words and most often I usually act before I think. It is different when your child has a life threatening illness. I felt a loss for words. On some level I think I was afraid that if I were too forward, Stephen would not get proper treatment. That is really not very logical thinking but who thinks logically during a time like this. I finally realized that as a mother I knew what was best for my child and what worked for him as well as what did not.

Throughout the past year Stephen has developed a wisdom beyond his seven years, I think it was always there but seems much more profound now. He has a deep faith and understanding of God that most adults do not have. I know that this wisdom will benefit him in many ways in years to come but on the other hand it has separated him. I wonder sometimes if he developed this sense of understanding upon the realization that I was always going to be inadequate with my explanations of this chaotic time in his life. The questions of “Mama, Why do I have cancer?” …”Mama, why do I still hurt when I prayed for it to stop?”..."why does the medicine make me sick if it is supposed to make me well?” My response always being “I don’t know.” Many of you have asked or have heard these questions before---why, why, why? That is why we are here today...to try to help raise money so no one has to hear these questions, there will be an answer to them all--a cure!!

As I have rejoiced over the fact that my baby is cancer free, I cannot be completely content in that feeling as other parents around me are grieving as this sneaky monster that we call cancer snatches the children that they gave birth to from them. As, I mentioned earlier, we have came into contact with many new people this past year. People who are enduring this battle. Several of which, the fight against cancer has not ended the way they had hoped. Certainly not as well as it has for us. Relay for Life offers opportunity to contribute to a worthy cause. With more research I am confidant that more medical advances for treatment of cancer will be made and ultimately…cancer will be wiped out. Survivors are more and more abundant today among children as well as adults that battle cancer than ever before. My prayer is that not even ONE more daughter has to say good by to her mother that fought breast cancer, not one more wife has to visit the grave of her husband that died due to a brain tumor and certainly that not one more mother has to tell her four year old that it is ok to let go and fly with the angels as he ends his battle with childhood cancer

Sunday, June 20, 2004 9:14 PM CDT

I missed a week didn't I? Not much going on last week...we did go to the Ambassador fish camp at WestLake outside of Dallas on Saturday...THe kids had a blast and they caught lots of fish..I will post pictures soon...We went to Children's for a meeting about the oncology camp in July..Stephen is going to have a ball if I can let him go...he is so excited about it! I am driving Savannah to Lufkin for church camp tomorrow..her first time....makes me nervous..she most likely is happy to go as I have been so crabby today...I think it is a combination of things...fathers day(I hate visiting the cemetery), her going to camp, and...and....who knows....
Paris Relay for Life kicks off at 6:00PM on the 25th. Stephen will be walking the Survivors Lap again this year. His class will perform one of their sign-language songs at 8:30 I believe. The entertainment promises to be really good. Wendy McNeal is in charge of that.
We stopped in the middle of the road on the way to church this morning to take pictures of an alegator turtle. It was really big but not as big as one that was in our yard a few years ago...Stephen had on his Spider man suit that day and was "watering" the tree so to speak...he thought he was tinkling on a rock until it opened its mouth!! He ran screaming into the house...that thing was huge! It went off into the pasture and we have not seen another one...this one today was the first one. I hope the pictures turn out.
Scans are next Monday. Not much else happening...
On a sadder note..Little Ian flew off to heaven this morning..a fellow Rhabdomyosarcoma warrior...I am putting his link at the bottom of this page so be sure to offer his parents some words of encouragement...I am not sure if there are any words...how exactly do you let your four year old go...how would you every stop the questions from flooding your brain??? WHY???WHY???WHY??? Please come out and support Relay...a cure MUST be found...no more babies need to be taken from their parents arms...I feel so blessed as Stephen tells me goodnight and lets me smell his hair. Then I feel so horrible for the parents that did not have the turn out that we did...I pray for peace for Ian's family.

Sunday, June 6, 2004 7:34 AM CDT

Yesterday was a great day and I MISSED IT!!! My little cousin Heather got married yesterday and that is where I was when my boy SCORED THE WINNING RUN IN THE TOURNIMENT!!!! The game was tied 5 to 5 (yes all you baseball fans, I know that there is another way to say that but I am clueless!) and Stephen was on third. As he ran into home (only his second time to do that!) the announcer called the game! He is so proud!! My mother came back to the church where I was helping clean up, and told me all of this! I think I told everyone that was in attendance! Most had no idea what I was even talking about! The kids in the dugout picked him up and made a huge deal out of it. I just cried. He really needed that. Now they play on Monday. He has been going to a baseball camp that Scott Scudder holds every year. It was three days this past week. Steve says that it really made a difference for him.
This week has been busy. I had been hoping for a calm week but it has not happened yet. Next week will be just as busy as I will be teaching summer school and the kids will be running to and fro. Maybe in July….
Don’t you just love the picture on the home page! I just love seeing how Stephen is changing. He and Nick are never far from each other. In the kindergarten picture he looks so pale and then that big mouth sore…. The first grade picture he is tan, healthy looking and still standing with his buddy…
We go Monday June the 28th for scans. It promises to be a long day. I plan to take him up to oncology to get his IV done. Radiology is just too traumatic for him. Being in a familiar place should help.
Keep little Ian in your prayers. His scans did not turn out so good. He is precious and I have followed him for this past year. http://www.caringbridge.org/nj/ian/
Be sure to post in Ian’s guest book. It helps to know people care…even people that you do not know.
I think that is all for now…have a great week!

Monday, May 31, 2004 8:16 AM CDT

School is out!!! The kids are already professing how bored they are! We cannot have a whole summer of that! Stephen will have baseball camp this week in the mornings so that will help. We went to Cooper Lake for a fish fry on Saturday. The kids got to swim and I think I got some pretty good pictures. I will post those next week. We also went to an open jam session at Bywaters Park. Wendy McNeal and her band put it together. It was a lot of fun. Several groups played and sang. Wendy is the mother of Stephen’s friend Blake and is also the person that organized his benefit that was held last summer. She will be in charge of the entertainment at Relay for Life here in Paris that will be held on June 25th from 6:00AM to 6:00PM. It will be located at the North Lamar High School Football field. Everyone try to come out and take part. It promises to be a lot of fun.
This past week has been busy…end of school stuff…I am ready to stay home some!
Happy birthday to Michael Craig! He is class buddy and we were unable to make it to his party last weekend.
Stephen has scans scheduled for the 25th of June but I will be teaching summer school that day so I think we are changing them to the following Monday. The bone scan was going to have to be on a Thursday anyway so that would be two days. Monday will be better all the way around.
Stephen is spending the night with Dane and Papa tonight…Savannah has a friend over and he says she is mean to him when she has a friend. Imagine!!
Well…I had better go get something done while it is quiet around here.

Sunday, May 23, 2004 7:38 AM CDT

Ok…drum roll please…Stephen FINALLY got to run into home plate!!! Not a homerun mind you…but still…. HOME PLATE!!! He got a good hit last night and went to first…. now remember…he ALWAYS gets out…. this time…. he made it…. the poor other batters might as well have not even batted…we just yelled for Stephen as if he were batting each time! He was so proud! Jesse (Papa) had given him some pointers when he was waiting to bat. I went to him to tell him how proud we were and he said “mama, do you know what I did to help me get that hit?” I said that I figured he did whatever Papa told him to do. He looked at me like I was crazy and said that no…he had prayed to God to let him get to home plate that time! Bless his heart!
His head was huge to say the least.
The pictures posted this week are of Mothers day. We were at the lake with Dane and Papa and several other family members. We went to try out the new barge and the kids wanted to drive. As we sat down for the nice calm ride on the barge (not a speed boat) we were in for a surprise. Papa told Stephen to take it easy getting out of the cove we were in. In response, Stephen went full throttle! We all flew backwards needless to say! Papa moved pretty fast getting to him and “helping” him with his acceleration problem. Savannah on the other hand drove quite calmly.
Aunt Doris Sue was a passenger on the speed barge too. I think she got more excitement than she signed on for. Stephen spent a lot of time that day searching for lizards. He caught them too! Uncle Bill gave him a net to use and he put it to work. He was funny and so serious about catching those things! I was afraid he would catch a snake instead or better yet get into poison ivy! None of that happened thank goodness. Naturally only Dane got into poison ivy! If the wind blows across it and touches her she breaks out.
Yesterday we went to Dallas for Stephen’s first official event as an Ambassador of WOKC (Wipe Out Kids Cancer). It was held at SpeedZone. We drove the cars and played video games. The event was held to give the kids a chance to do the artwork that will be auctioned off in September I believe. It will also be made into a calendar. I will post ordering information as soon as I get it. Stephen did November. He drew a picture of a bear going into hibernation (?????). He was determined that the hibernation process was indeed more important than Thanksgiving!! He finally compromised and drew a bear cave with a hibernating bear in it along side a table with a turkey on it. Oh well….
His class is coming out tomorrow to play on his clubhouse set. That should be interesting.
I took the kids to see Shrek II on Friday. They really enjoyed it.
Oh….I will post pictures as soon as I get them but Friday was track and field day at school. Stephen won a first, second and third place ribbon. He really did well. You would never know that just a few short months ago he could hardly walk without doing the “Vinecristine trip”!
He was very proud of his ribbons! Savannah also got a first place ribbon as well as a second and a fourth.
School is winding down and we have only four more days! This summer promises to be a calm one for us

Saturday, May 15, 2004 6:38 AM CDT

Yes I missed a week of posting...sorry...very busy this week. Everything is fine. School will be out in two weeks. Stephen got another hair cut this week. Another couple of cuts and he should be able to wear a flat top again. He looks great. Lots of color in his face now.
The kids in his class are coming to OUR house for a field trip a week from Monday. They want to see the playground that he received from a local organization. Should be interesting!
I have been wondering if this year is going to be filled with "on this day last year we were..." and wondered if I were abnormal for thinking that way. I suppose I am fine because upon checking other kids sites that are at the same point Stephen is, I notice that the other parents are doing the same thing. I guess reflection is ok. Mothers Day was like that. All I could think of was last Mothers Day we had to take Stephen back to the hospital with that horrible bowel obstruction. I think that was the worst part of his whole treatment. He thinks so too. I am so glad that is all behind us now. Or is it? I wonder if it will ever be really all behind us? I really thought by now I would not think about cancer every day. I do though. Not actually with fear...I just think about it.
Baseball is going well. Stephen got two really good hits this week. The team we played had some really good catchers though (is that the correct term) and they got him out before he got on base. He just wants ONE TIME to run into home! He will! I am sure of it.
The kids are going to be in the school variety show on the 26th. They, along with Dee are going to do a karate demo to the song "kung-fu fighting". It is really cute.
Not much else going on this week. I guess that is a good thing.
Jessica Gilpin update: She went HOME!! Everyone is amazed as she progresses at a rate that is unheard of in transplant! You can check her link at the bottom of this page.

Sunday, May 2, 2004 6:39 AM CDT

As life continues around us we constantly see how blessed we are. As you can tell by the pictures, Stephen is feeling great! The story behind these pictures is that Stephen was trying to show me a new kick that he had learned in Karate. I was supposed to “capture” said kick on film. A. I am no photographer B. I had no idea which part of the kick I was supposed to get. C. According to Stephen, I am simply trying to ruin his life by NOT being able to take the correct picture!

At any rate… this opportunity produced some interesting viewing for our friends in cyberspace!

Happy Birthday Nick! Stephens best buddy Nick is seven years old today! I was not in class on Friday when he had on his “Happy Birthday from Chisum” ribbon, so I told him if he wanted I would stand on the table at school Monday morning and sing to him. He is a sweet and serious little boy; he said, “That’s ok Mrs. Rhodes, you don’t have to do that”. He is such a good kid and so protective of Stephen.
On Friday night Stephen had a ballgame.

Nick and a couple of other kids from his class were watching him play. Unfortunately, he struck out every time. When we were leaving the ballpark, Nick walked with him and put his arm around his neck. Nick said, “Stephen, you did a good job”. Stephen said, “I never even hit the ball!” In his sweet little voice Nick told him, “But you will next time!” They just walked like that in silence until we reached the gate and Nick went back to his parents. True innocent friendship. We should all be so lucky to have just one in our lifetime.

As the school year draws to a close, we are getting excited! We all but missed last summer! This year, no chemo, no radiation, no trips to Dallas (well maybe a few) or being sick! I have been in school for the past several summers also and this will be the first one that I will be at home. I DO need to get a job though, so if anyone has any summer job opportunities for an “almost” elementary school teacher please email me!

Stephen weighed yesterday on my scales and they said 52.5! He is really gaining! His hair is getting thicker too.
He just has a small scar on his side where the port was, but he doesn’t like it at all! I told him it would fade as time goes by.

Sad update: the little Savannah from Arkansas that some of you are keeping up with earned her angel wings this weekend. Please keep her family in your prayers.

Jessica Gilpin is undergoing transplant this week. She is not doing as well as she could be so please remember her as well.

If you did purchase the Bob Marley CD that I wrote about last week then I am sure you are thanking me right now because you have the words “Don’t worry, ‘bout a thing, cause ev’ry little things gonna be alright” stuck in your head now! Sorry! It is a great song though!
Ok…that’s all for this week. I need to get this crew up and ready for Church!

Oh!! I forgot to mention! Karate testing was week before last and Stephen is a brown belt now and Savannah is a Blue belt!!

Sunday, April 25, 2004 6:36 AM CDT

BBQ was cancled due to rain but will be rescheduled for next Saturday. Stephen was disappointed. He has been feeling great and looks like he his gaining weight. Hair is looking thicker also. We had a much needed day at home yesterday. I was actually able to go walking with Miss Selena, something that I have not had time to do for a while. Baseball is going pretty well and we continue with Occupational therapy. He still seems to have a deficit on his left side. I finally got the port removal pictures as you can see. Not much exciting going on this week. I plan to keep this site going for awhile, if for no other reason than to keep some links to other childrens sites. They are located at the bottom of this page. Please check on some of these kids and put an encouraging word in the guest book. It really is great to know that people that you dont even know are thinking of you. I did order the Bob Marley CD that I mentioned to a few of you. Stephen and his class perform signlanguage with the help Miss Cherry. One of the songs that they do is called "Three Little Birds" by Bob Marley. He wrote the song that Eric Clapton recorded "I shot the Sheriff". I had nerver even heard of this guy before. I did a little research on him and discovered that he had died in 1986 at the age of 38 of brain cancer. Isn't it ironic that of all the songs that the kids perform, I choose this one to really like? It makes me cry when I watch them do it. It is a ragae style and really makes you feel good to listen to. Here are the words:

Don't worry about a thing
'Cause ev'ry little thing gonna be alright
Singin', "Don't worry about a thing,
'Cause ev'ry little thing gonna be alright."

Rise up this morning,
Smiled with the rising sun
Three little birds pitch by my doorstep
Singin' sweet songs of melodies pure and true
Sayin', "This is my message to you-u-u."
Singin'...
(Repeat)

"Don't worry about a thing,
'Cause ev'ry little thing gonna be al-right."
(4 times)

When ever I start singing it here at home Stephen will stop whatever he is doing and start signing! He is so funny! All of you caringbridge parents....get this CD!!
I need to get Julianna's dad to tell me how to link the song to this site.
Have a great week!

Sunday, April 18, 2004 9:27 PM CDT

Well today is "D" day. One year ago today I was sitting in Dr. Graves office and he was telling me that the tumor he had removed from Stephen's eye socket was cancer. I cannot believe that it has been one year! Then again...it seems like forever! Sorry about the pictures. I still have not picked them up. I will try to get them on this week. I promise.
Stephen started Occupational Therapy last week. He had a good week in baseball too. He had struck out several times and he got up to bat and WACK!! He hit that ball! Made it to first base and everything! Made me cry! I just hate that it is a struggle for him. I guess if he can beat cancer he can beat that too!
I am so thankful that things have turned out the way they have. I look around and see the "other side" and know that we are blessed. We have met so many people, experienced so many different things, and landed on our feet.
Stephen will be a part of the Relay for Life event here in Paris again this year. I plan to take a more active roll in the planning for next year. I hope to be calm by then!
Thank you everyone for keeping us together this past year. Thank you God for keeping your hand on this situation. Thank you for healing my boy.

Tuesday, April 13, 2004 5:27 AM CDT

I was going to wait and update when I had the pictures of his port removal. I am too slow about getting them developed so I will go ahead. Everything went well. We carry the port around in a baggie now! Just a small incision. Stephen laid around for just a little while after we got home and then he was off and running. I took several pictures and will post those as soon as I get them. He woke up easily after the surgery. Walking into that recovery room caused me to flash back. Last year, I remember being so MAD at the nurses in the recovery room. They were having a WEDDING SHOWER in the recovery room! I could not believe that other people were going on with life while I was losing my mind! Now...that would seem perfectly normal to me. Interesting how your perspective changes. He looked so little and sweet laying on that stretcher.
We went to my aunts house and hunted eggs on Saturday. The kid had a great time and now have more candy than anyone needs. On Easter Sunday we went to Dane and Papa's house for lunch. The kids got several packages in the mail from different chemo angels. They get excited when they get home and a box or a package is on the table.
I was reading the sites of the only two children on caring bridge that are on the exact protocol as Stephen. These kids also were diagnosed with orbital rhabdo. I noticed that atleast one of the kids had a bone scan, MRI and CT (along with a chest xray} at the end of treatment. I am not sure of the other one...I am going to email the mom. Stephen only had an CT and a chest xray. I dont really worry that there is a real reason to do more but I do want to be ABSOLUTLY sure that all bases are covered. If any caringbridge parents have any information on that let me know. I should talk to his nurse today and find out when he goes back in for scans and blood work. It was set as every two weeks for counts but I have not heard from the clinic yet.
The kids only have a three day week this week. We are out Thursday and Fri.
Stephen hit the ball in his game yesterday! He got out before he got to first base but he HIT THE BALL!! IT is really hard on him to know he was doing so well last year and having such a hard time this year. I really think he will recover fully from the effects of Vinecristine. I should hear from Rehab today about when he will start regular therapy.
Not much new. I will update the pictures as soon as I get them this week.

Sunday, April 4, 2004 7:49 AM CDT

CLEAR SCANS!!!! I never doubted any less but it was still great to hear! Last Tuesday was a LONG day. The scans were scheduled for 1:00 so he was NPO after 10:00A.M. That did not seem to please him at all! We went up to the clinic to get accessed. I don’t know if it was because he was hungry or if it was the fact we had made such a BIG DEAL of his LAST chemo or what, but he was very edgy over the accessing. We finally got that done and waited some more. Oh..we saw Jessica Gilpin and her mother at the clinic too.! Stephen would not speak to her ( she is a girl you know) and acted shy (yeah right). She seemed to be doing pretty well and then when we got back to Paris I heard that she had been admitted for pneumonia. I understand that the transplant has been put off. I will give more details as I have them. Please remember her in your prayers. We went back down to radiology and true to form; they called us back to “start and I.V.” This happens EVERY time no matter WHO we tell that he has a port and is already accessed! This time Stephen rolled his eyes and just pulled his line out from under his shirt and showed the nurse. Now just so you know, that is NOT what I do when this happens. I just say in a very sweet but slightly confused sounding voice “oh, well, he has a port and is accessed” with a slight question intonation to it. That leaves me feeling a little superior and the nurse feeling a little stupid and we all are happy. Stephen did not follow my lead I guess. Like I said, he was a little grumpy. The actual scans went well but he did get sick on the way home. I think it was a combination of choc. Milk and the dye used in the scan. Thankfully he did wait until I pulled into the driveway and let it fly on the concrete (dirt was about 2 inches away but who cares). We did stop at Medical City on the way home to visit my friend Kathy who is in for a long haul with her SECOND twin receiving a stem cell transplant. We met them last year when Brooke was being transplanted. Now it is Brett’s turn. She looked great but tired. You can check on them at www.hieberttwins.com.
Stephen will start physical and occupational therapy on Tuesday. I did not realize until this week just how profound his nerve damage is (profound may be a little strong). He came home from baseball practice very upset and Steve told me that he really has a hard time holding the bat, catching, throwing and running. You can see that he might have a LITTLE trouble actually PLAYING the game. It would not be so bad if he had not started playing last year and he could definitely tell the difference in his ability. We told him that the therapy would help this problem so I hope it does. He played his first game yesterday. He did fine but of course not as well as he wanted to. It brought back a lot of memories, as it was after his first game last year that I took him to the doctor with his eye. He was given a shot of benedril and we were told it was an allergy (in one eye). This year he will actually get to PLAY all of his games.
PORT REMOVAL on Friday April 9, 2004! He can hardly wait! One doc wanted to wait and the other wanted to go ahead to reduce the chance of developing an infection. Stephen opted to go ahead. So in we go next Friday! I think THEN it will seem real that we have completed this leg of the journey.
Changing gears, yesterday was my fathers birthday. He passed away Nov. of 2002. This is the second birthday without him. I went to the cemetery yesterday afternoon by my self. It was such a beautiful day. I am his only child and I miss him. Happy birthday Daddy, I hope that up in heaven you are eating all the sweets that you want with no one fussing about your blood sugar and pigging out on fried potatoes and red beans! Enjoying that new body to the fullest extent!
I better go, this time change has me messed up already!


Light of the world, You stepped out into darkness, open my eyes let me see, beauty that made this heart adore You, hope of a life spent with You. Here I am to worship, here I am to bow down; here I am to say that You’re my God. You’re altogether lovely, altogether worthy, altogether wonderful to me.

Monday, March 29, 2004 8:43 PM CST

Well tomorrow we have scans. Nothing by mouth after ten A.M. so that should be fun! I finally got the Party Pictures on here! This past week and weekend has been great. I went to Lufkin to ladies conference. We had a really good time. It is hard to believe that last year I was at the same conference and had no idea what was growing in my baby’s head. Now, this year, it is all over.
Stephen was pinned this Sunday at the WOKC (Wipe Out Kids Cancer) Ambassador program at Children’s Medical Center. We were all on Channel 8 News!! Aunt Doris Sue, Aunt Cathy and Uncle Robert, Nannie Nelda and Dane and Papa went with us. The ceremony was bitter sweet as one of the Ambassadors had passed away on Thursday. He was five years old and had a brain tumor. His older sister accepted the pin on his behalf. Just another reminder that we have been blessed. I am glad that Stephen will be a part of WOKC and their mission to raise money for research to fight this horrible disease.
Two of the children that I keep up with here on caringbridge lost the battle with cancer this week. I guess I should say WON the battle, as they are no longer in pain and are actually better off than we are. Two more are slipping away as we speak. That is just the ones that I know about. I cannot imagine what those parents are feeling right now. Please remember all of these kids and their families in prayer.
We will have the ARD meeting to discuss Stephen and his therapy on Thursday. I think it has been decided that he would get more intense therapy if he went to the rehab center here in Paris as opposed to doing the therapy in school. I just want to do what will help him the most.
Baseball practice began last week too. It was at the beginning of baseball season last year that we noticed something wrong with his eye. This year he will get to play the whole season!
Relay for Life is coming up again soon. Stephen really enjoyed that last year and we play to participate this year as well.
Mandy, our former youth pastors wife was at ladies conference this weekend. She kept Stephen when he was little. The posting that she put in the guest book referred to Stephen and his “tail”. HAHA!! I think I had better explain that! He was about three years old and he LOVED the Lion King movie. Well, that led to needing to wear a tail! Like a lion! We would tie a bathrobe sash around him and let it hang! It sounds a little weird now, but at the time it seemed perfectly normal! The first time I took him to Mandy’s house she looked a bit confused. To us it made perfect sense to put a tail on him if he thought he needed it!! After a while Mandy and Andrew (her husband) felt the same way I guess because they hauled him to Wal-Mart and everywhere else wearing that silly tail! Poor Mandy had no idea what Stephen had been through this past year until this weekend. She and Andrew were always so good to him and he loved them. Stephen always called Andrew her “friend” because he had a little crush on Mandy and did not like that whole “husband” thing!
I think that is all for now. I hope to have pictures of the ceremony in a few days. We plan to get a positive report on the scans tomorrow.

Sunday, March 21, 2004 7:05 AM CST

Stephen had such a wonderful time at his “End of Chemo Party”! Thanks to all of you that participated in that! I will post pictures of the party next week, I am always about a week behind you know. We think around eighty or so people were in attendance. We cooked hotdogs (well..Papa and Dane cooked them), rode the cart with Buttons the miniature horse pulling it, fished, ate deserts, visited, played horse shoes and just enjoyed the beautiful atmosphere! Miss Carla and her sister Leslie along with their mother Mrs. Boren served, organized, cleaned up and acted as my own personal catering service!!! And what did I do??? Well I DID visit with everybody and take pictures..that is important…right??? It was great and I could not have done it without everyone! So many people brought things and if I start naming people I will forget someone! Thank you again everyone for helping us with everything! Mr. and Mrs. Cunningham that own the farm were great! That place is so beautiful! Visit the website at www.tlcminis.com.
They had a sweet little baby horse that was only two days old that they brought out for the kids to see. It was so great to have all the family and friends in one place to help us celebrate this milestone.
The kids spent the night at Dane and Papa’s house last night. We went to our friends Misty and Duane’s wedding and they went home with them after that. Stephen has always had a crush on Misty (hope he doesn’t read this) and when it came time to catch the garter we told him to go try. Well that was fine until he saw it coming off of her leg!! He looked appalled and said, “ What is that?? I am not going to touch THAT!!!” It was hysterical! He did not know what a garter was until then but that was just TOO MUCH!! HAHA!!!! Misty looked beautiful and the wedding was too. Congratulations to both of them as they start their new life together!
Homer cut Stephen’s hair this week and he looks more like his old self now! Homer told him that lots of new little hairs are sprouting already!!! I swear he already looks better!!
Scans are scheduled for March 30th. Then we will find out when the port comes out!
I would rather have NOT taken this journey, but as we DID take it, it seems that so many people were affected by it. We met people that we would not have ever met, grown in ways that we would not have grown and learned to appreciate the little things. We look at life a little differently now…
God has His hand on Stephen’s life. He is destined for great things. He is such a thinker and is so profound for seven years old. God has a plan for him and the rest of us get to go along for the ride!!

“CELEBRATE IN THE PRESENCE OF THE LORD, FOR HE IS WORTHY TO BE PRAISED!!!”

Sunday, March 14, 2004 7:36 AM CST

Well…its done! No more chemo…I feel strange writing that even though I have said it a thousand times. I have mixed feelings I think. Over…not really…I guess it will never be OVER…not in my head anyway. Just no more poison shot into an IV and pumped into my baby’s body. No more throwing up..no more thin hair..no more WEEKLY trips to Dallas. Great… Now I have that song “ Hit the road Jack” stuck in my head!
I will post “end of chemo” pictures later. I have not had time to get them developed yet. We even made a video to show his class what he has been doing on Fridays for the past year. With my video technique it should be interesting. Scans are scheduled for April the second. Then I am not sure because I got about three different versions of what will happen next. I will find out for sure this week.
END OF CHEMO PARTY!!
Scheduled for FRIDAY MARCH 19, 2004. Location is TLC Mini Horse Farm. 4:30 PM. We are going to cook hotdogs with all the trimmings and desert. The kids will have cart rides with the horses. Bring your rod and reels. Come celebrate with us! If you need directions call me or go to www.tlcminis.com a map is provided on the site.

My friend from Arkansas went with us this week to clinic. Stephen even let her video the accessing. Now we had to stop the camera when he did his usual puking after accessing…but other than that it was great! The clinic gave him an end of chemo gift. A spider man skateboard scooter! He really liked that!

Stephen is looking forward to REAL HAIR!! He tells me that he is going to let it get really long. NOT!! I wonder how long it will take to grow in good. Plans for occupational therapy are underway. Spring break is this next week and we are planning to just chill and stay home.
The pinning ceremony for “Wipe out Kids Cancer” will be the end of this month. Stephen will be an “Ambassador” for this program. It should be a lot of fun.
It has been quite a ride this past year…not just for us but also for all of you that have supported us. As this phase comes to a close, we thank each of you for your prayers and support. I will continue to keep this site updated and we hope to see a lot of you this coming Friday!

Tuesday, March 9, 2004 5:18 AM CST

I know...I know..late again! Sorry...things are just so busy around here that I am just now getting to update this week. One down and ONE to go!! We do plan to have an END OF CHEMO PARTY. But no official plans as to when or where...we will work on that this week.
The referral process to get Stephen started on occupational therapy is in the works. The nerve damage to his fingers due to vinecristine is creating a problem with writing and other fine motor skills. I am sure that the therapy will help. I forgot to mention last week that Stephen won a Bible in his Sunday school class for learning his memory verse every week. Pastor Myre wrote a message in it and he is so proud of that. This past Sunday night he was selected to recite a verse for his age group in front of the whole church. He was very proud of himself. When I was filling out the paperwork for his "ambassadorship" one of the questions was " what do you want to be when you grow up". Stephen thought about this for a while and then told me that he would either be a karate instructor or a preacher! Hmmm...could be interesting..
The other day Papa and Dane took Stephen with them to see Granny. This is Papa’s mother who is eighty-five and in a nursing home. Granny is a wonderful lady of God that Stephen adores. As most of us will likely do at eighty-five, Granny tends to forget what has already been said and will say it again. Stephen answered her questions politely even though he had already answered the same one two or three times. When they left he stated to Papa with all seriousness…”She has short-term memory loss doesn’t she”.
Naturally this was pretty funny coming from a seven year old so Dane and Papa were cracking up. I dare say that I will most likely have short-term memory loss when I am eighty-five also! I think I have it now!
Yesterday Stephen had to go home from school with fever. We are just watching him right now but I will take him in to have it checked out today. So many bugs going around. He is coughing pretty bad and complains of a stomachache. He wants to be well for sure by tomorrow because I will start my internship in his class then. I have been in third grade but switch this week. Should be interesting…
He has been going with me when I have seminar on Fridays. This is a group of about twenty-five women and he really likes it. Last Friday we were making some things using a variety of materials and the lady that brought the stuff told Stephen to help himself. He made a really neat mask …I think…and we brought it home. Savannah asked him what it was and he told her (sounding like he was 25) that he had made that in “seminar”. I think she rolled her eyes at that.
I think that is all for now and I will try to be more prompt in my updates

Tuesday, March 2, 2004 7:33 AM CST

TWO MORE TO GO!!! The count down continues!
Friday was the fastest clinic trip ever! I discovered that all you need to do is state that your child has been exposed to chicken pox in the past 21 days and BAM!! You get in and out of the oncology clinic SUPER FAST!! One hour...that is all it took this week!
The kids are so proud that Papa is home to stay! I dont think it has sunk in yet for him. Five years of driving back and forth to Mississippi is hard to get out of your head I am sure! The kids have great plans for him!
Savannah's slumber party went well..the girls were still not asleep at 4:00 AM when I checked! They had a good time.
Stephen wants it known that he did not throw up upon access this time. Of course he refused to eat all day so that could have something to do with it. A nurse other than miss Pat accessed him this time and he informed her that while she did good she still did not do it correctly...only Miss Pat does it right. She told him that she would try harder next time. He stated that "next time" Miss Pat would do the accessing!
Stephen is still having that uncontrollable urge to CHEW!! MRs. Sanders allows him to have gum in class (so that he does not chew his clothes to pieces) and that seems to help. I hope the end of chemo brings the end of that mess!!
Not much exciting happened last week...not that I can remember anyway.
I am going to place a link to Jessica Gilpin's site at the bottom of this page. If you have not yet responded to this need please do so. Please pass the site on to everyone that you know. Please keep her in your prayers.
Happy Birthday to baby Seth!! My best friends little boy in Arkansas! No..of course I did not get his present in the mail yet..wouldnt want to break tradition now would I? His birthday was Saturday.
Well...until next week....

Monday, February 23, 2004 5:18 AM CST

I think I am in the wrong profession...did I NOT state last week that although it WAS snowing on Saturday in Texas that it quite possibly would be seventy degrees the next day??? Oh yes..I believe I DID say that! Maybe I should be a weatherman..woman...whatever...because it has been SEVENTY degrees ALL WEEK!! That would be our crazy weather here in northeast Texas! Last Saturday the kids were bundled up in coats and hats with boots and this week barefeet were in order! It has been beautiful!
The first grade at Chisum Elem. performed a program for the PTO called...well..something to do with pigs oinking, I cant remember the exact name. It was precious. Mrs. Hildreth (our music/art teacher) always does a wonderful job directing these programs. Stephen and Nick were pigs (duh) and they performed beautifully.
We had a good weekend. Chemo went well and Stephen was only sick a couple of times Friday night. THREE MORE TO GO!! He is still throwing up when they access him though...but I am getting really good at dodging it!! I see it coming an promptly throw him off of the table...not really...but I am fast at getting that pan ready!
I want to keep the information about Jessica Gilpin on here for a while. I thank all of you that have responded to this need. I spoke to her mother this week and they are amazed at the response. The hospital is going ahead with the beginning procedures such as full body radiation and such to prepare her for the transplant. It looks like that because of the response from people like you this is going to be able to happen. I found out that in addition to the million dollar transplant she will need over a hundred thousand dollars worth of meds for the next year to prevent rejection. They have placed a paypal link on the site as well. The address is www.projectjessica.com
Please keep all children that are fighting this monster in your prayers. The second link at the bottom of this page will show you just how vast childhood cancer is. Naturally what you see on those sites isnt a fraction of what is REALLY out there.
Savannah will turn 11 on Thursday!! She is excited! My baby is growing up!

Saturday, February 14, 2004 2:05 PM CST

Yes..it is true...SNOW!! Ok Chemo Angel Leighton!! We might catch up with you!! Ok...maybe not but it would be cool!! Now, for those of you that are not up to date on the weather process here in NE Texas...it IS snowing...right now...tomorrow it might very well be 70 degrees! It is 34 at the moment so we are enjoying the snow. Forecast is about 5 inches. It is up to three right now.Ok..I can hear you all up north snickering.
The kids got several packages for Valentines Day from various chemo angels. You guys are great! One angel named BJ (I do not have an email address for her so if anyone knows who this is please let me know so I can email a thank you) sent a cookie bouquet! It is beautiful...was..was beautiful, now it is gone! Leighton and his family sent a HUGE box full of things! Angel Debbie sent a box of things as well...my kids, needless to say, had a great Valentines Day.
On a less positive note..most of you here in Paris are aware that Jessica Gilpin, a 16 year old girl that is formally from Paris, has relapsed. She has leukemia and the relapse has presented a financial problem in that she has maxed out her insurance. A bone marrow transplant is the next step and until the finances are secured she will not be able to begin the process. Time is running out and the financial director from Children's suggested a fundraiser. Her church is sponsoring it and I am including her website here. http://www.projectjessica.com/
The site asks everyone to forward this information to everyone that you know. If we could all send in just ONE dollar she could have the amount needed to secure the transplant. Jessica WILL die without this transplant. In Texas, if you do not qualify for government assistance you are simply out of luck. This family does not. I thank all of you in advance for your response to this need.
I put new pics of the snow in the photo album. We plan to make snow ice cream later.
Stephen now only has FOUR more chemos left!! Next week is “bad” chemo. I am glad it was not this week so that he could enjoy the snow.
He threw up again this week during vinecristine. Our favorite techs Miss Tory and Miss April were teasing me about only feeding him popcorn all day (this was untrue that was just what was on his mind when they asked him what he had been eating) while we were checking out. Nurse Pat said, “Well, I don’t guess that it matters because he gave it back anyway!” I guess you would have just needed to be there. It was very funny! Stephen even thought so.
His counts were great! I think we are going to make it all the way with NEVER having had a transfusion!
I think that is all for now…more next week.

Tuesday, February 10, 2004 1:17 PM CST

I am a little late updating but better late than never!
We had a ball seeing the Globetrotters on Saturday. They really put on a good show. Nick (Stephen's buddy) and Katy (Savannah's buddy) went with us. Mark somebody (owner of the Maverics (sp) team) played on the opposing team (New York Nationals) and that seemed to cause quite a stir among obvious basketball fans. I appearently am supposed to know who he is but as you can tell I do not. Stephen was most impressed with the Globetrotter with a HUGE afro! You would think the bald guys would be the most impressive to him! We ate at On the Border and would you believe that my son ate a hotdog!!
CUBIN!!! The guys last name...CUBIN...my husband tells me..sorry!
Chemo went well except Stephen puked in my lap during heprin! He was eating candy as he always does to cut the taste but I guess heprin and chocolate do not mix! It sure does not mix well with my new lime green skirt! ONly five more! He is so excited! He has been getting several packages in the mail from chemo angels! One of his angels is a 9 year old boy (Leighton) and they have alot in common.
His teeth have really been giving him alot of trouble. He grits his teeth really hard and even bites things! He says that he cannot help it. He says that he HAS to chew on things when his teeth start bothering him. WHAT NEXT!! I will be so glad to stop putting poison into my sons body!
Congratulations to Josh on finishing his protocol! Josh is a little boy in Florida that has the same cancer (same spot and everything) as Stephen and he just finished his treatments! Go Josh! You can visit his site at www.caringbridge.org/fl/joshuasjourney.
I put new pictures on the photo page but they are not very good. Dont know what happened! Dane (my mother) painted Stephen's room while we were in Dallas on Saturday. Stephen was so excited! It looks SO much better!
We found out that Papa will be home the end of the month! He has been working in Mississippi for the past 5 years finishing out his retirement with Babcox and Wilcox(a company that shut down here in Paris after forty something years)so the kids are really excited! THey did not think the time for him to move back would ever come!
I guess that is all for now.
More later...

Sunday, February 1, 2004 5:35 AM CST

Good morning to all! I know that I am falling down on the job as far as pictures go but I just cannot remember to take them when needed! I will do better this week.
Shortly after last weeks post, Stephen DID get a fever. It never got over 101.8 and stayed mostly at 100. We did end up going to the ER on Sunday morning just to have counts checked and run some roseflin (sp?) and he is doing fine. He hated being at a different hospital with a different way of doing things.
Counts were good this week and he had dactinomycin and vinecristine. True to form, he threw up most of the night but stopped around 6 AM. A little puny most of the day but fine.
He is still getting gifts and mail from his chemo angels. He loves it!
I was able to talk with Dr. Wynic ( one of the SR. Docs in oncology at Childrens) on Friday and she has him down for ocupational therapy at the end of his treatment. She said he may need a jump start on his fine motor skills at that point. The handwriting thing is really a problem. He gets really frustrated with any writing that he has to do.
We stayed in all day yesterday. My mom came out to do Savannah' room. We hauled EVERYTHING out of her room and then she and Steve painted it. It looks great! I dont even want to put anything back in. We are really going to cull out everything first. Stephen is already hitting my mom up for a date to do his room too!
Next weekend is our trip to see the Harlem Globetrotters. The kids are really excited! It is on Saturday.
That is about all for this week. I WILL take pictures when we see the Globetrotters! Have a great week!

Saturday, January 24, 2004 5:05 PM CST

Not much going on here this week. Savannah has been sick with a low grade fever and has missed two days of school. Stephen had good counts this week and for that we are greatful in light of Savannah's fever. The fact that he has started throwing up due to stress before getting accessed is a bit odd at this point. He says that the smell is making him sick.
As you have noticed I put his REAL picture on this week. I could not help the last one! Honest! I could not help it!! One of my instructors (Becky) put that in an email to me and when Stephen and I saw it we laughed so hard because it looked like his hair! I had to play with it to get it to blink on the webpage but I finally got it to work. Humor, as most of you know, is my sanity. Stephen had me to pull up his site in his classroom to show his friends. They loved it!
I love his school picture. He looks so sweet in it.
It has rained all day here today. The kids and I have stayed in. We had to anyway due to Savannah's fever but the yucky weather did nothing to entice us out.
I turned 35 on Thursday. Twenty-two sounds so much better so I think I will stick with that.
Dr. Huh sat in the waiting room with us for about an hour yesterday. He and I discussed Stephen's writing. He said that most likely he would continue to struggle with his penmenship for several months after treatment ends and possibly always. Could be worse. I guess I can teach him to type. My handwriting is impossible to read and I have never had vinecristine! The computer is the best thing that ever happened to me!
As we sat in the waiting room a little girl and her family that I see on occasion sat with us. I noticed that mom an dad seemed nervous. Dr. Huh sat down with them and I heard him say that her scan was clear. Mom started to cry and it seems that a scan done the previous week indicated a mass in her abdomen. A second scan proved that untrue. The little girl is seven and had vaginal rhabdomyosarcoma.She is 14 months off treatment. I cannot imagine what those parents were going through as they waited for the results. Relapse in Rhabdomyosarcoma is a horrible thing to hear. The prognosis becomes very dismal upon relapse. I hate to be so grim but that shook me up. I wanted to cry with that mom but Stephen was watching me. I told Dr. Huh that he better be darn sure of a bad scan before ever putting me through something like that!
The next birthday that we have to look towards is Savannah's! Eleven years old! Where has the time gone??? February 26th will be here before we know it. Two pounds and 13 ounces. Seems like a dream.She was so tiny! She has grown into a beautiful young lady that we are so proud of. She has handled this glitch in our lives quite well. Stephen's chemo angels had been kind to her also. We are greatful to them.
That is all for this week. Next week is "bad" chemo but that will be one of the last three "bad" ones. Seven left in all!! We are counting down!

Sunday, January 18, 2004 6:38 AM CST

This week was a good one. Counts are fine...actually his ANC was UP from last week! This makes no sense! Hemoglobin was down just a little but everything else was great! HIs school pictures finally came in so I will try to get it scanned and put on later today. My silly printer scanner thing never works right. The weather was terrible all the way to Dallas on Friday. It rained the whole time. Steve drove us and I read a book (smile). We tried the earphones that came with the DVD player that is in the car. They worked fine except Stephen kept yelling at the top of his lungs (he thought I could not hear him because he could not hear me) different things that were happening on his DragonBall DVD! I assume that he did not understand the whole reason behind the earphones was to keep us from HAVING to hear the Dragonball DVD!! Needless to say we heard it anyway!! He finally just took off the earphones as it seemed we were just not able to totally appreciate the total Dragonball experience with him. He has a few of those Dragonball DVD's but I just dont like the Dragonball "Z" series. They are so violent. Eric's dad (another rhabdo kid here on caringbridge) mentioned that in our guest book and I agree. He has several of the figures but not the movies. The regular Dragonball seems to be the characters when they are children and it is geared more to smaller kids (I think) than the other.
First grade at Chisum every year does a family tree project.Each child ( along with family help) designs a family tree complete with pictures and labels. Along with this tree, each child has to write a paragraph about a family tradition and read it in front of the class while presenting the family tree. Stephen wanted to do his tradition on his yearly trips to the deer woods with his Papa. His paragraph said this and I quote:
"My favorite tradition is helping my Papa get a deer every year. First we skin the deer and take out the insides. Then we wash it out in the pool. We cut it up and put it in a cooler. I love being with my Papa".
He took his deer horns and a picture to pass around. He was very proud.
We stayed home all day yesterday. It rained off and on but the temperature was around 65 I think. It is supposed to snow on Tuesday. Welcome to Texas! You never know if you should go barefoot or wear rubber boots!
We did get a new theme for his room going. I forgot to write that last week. He picked out a Martial arts print at walmart. It really looks good. It is black and white with a little gray. It has Japanese print on it and dragons. He loves it. I found some little plaques that are a set of four. They have an Asian print of some kind on them and each of them mean a different thing....harmony...love....peace...and things like that. I think it will look good after we paint and get this stuff up. My mom did Savannah's room for christmas. She wanted animal print. We are slowly gathering up things for her too.
To other caringbridge parents: Stephen is really struggling with his writing. I know that is a side effect of that nasty vinecristine but I would like to hear if any of your kids are experiencing this and to what degree. Stephens teacher told me that she does not want to hold him responsable for something he cannot help but then we both wonder how much is the vine and how much is seven year old boy not wanting to write! Please send me your thoughts on that.
Our friend Josh is almost finished with his treatment!! Go Josh!! You can find his page on the Rhabdo site. He has the same cancer as Stephen (oribital Rhabdomyosarcoma) and is about five weeks ahead of him.
We found out Friday that Stephen will not have to make up the dose that he missed when he was so sick! That means that we will be finished around mid March!! Only eight more treatments to go! I can hardly believe that it is almost finished! Dr. Huh said that if all goes as planned he will have his port removed sometime in April and then Dr. Graves will fix his eyelid this summer! He will go for monthly checkups and count checks and scans every two months for a year I think he said. They will continue to monitor him for the rest of his life but we foresee no problems.
This whole year I have had this song in my head:
"Trials I've had, battles I've fought,through your Word Lord you have taught, don't go left, don't go right, if I just stand I'll win this fight. The battles not mine but the Lords He will be my shield and sword, because He loves me and I love Him too".
I have shared that with a few of you before. True isnt it? It is just that STANDING thing I seem to have trouble with...CONTROL....CONTROL....CONTROL....it is hard to give that up when your child is involved. Stephen is going to be fine and we have all grown during this "battle".

Sunday, January 11, 2004 5:34 AM CST

Good morning! Counts were great this week and of course his scans were clear. I thought I was going to have to wait until Monday for the results (that has never happened before) but Dr. Huh called me after we left the hospital with the results. Stephen was feeling great when we left the hospital. He wanted Mexican food! We stopped and ate and he was still feeling great when he went to bed around 9:30. He was distracted with the playstation so I talked him into taking his disolvable Zofran with just water! He did it!!! NO PROBLEM!! I was thinking "Great,now we will do this everytime." That would have been fine if IT HAD WORKED!!! He started throwing up around 10:30 and did not stop until yesterday afternoon! I simply cannot figure this stuff out!! NO rhyme or reason! It went unsaid but I could just feel him thinking about how he would NOT be taking the Zofran again!!
In the "Your kid has cancer so here are the rules you must follow" book it states that after your child has chemo you should refrain from touching body fluids for 48 hours. Gloves are to to worn when cleaning up any accidents. Well that would be fine if I could ever remember that at two in the morning! I also found that the gloves made little difference as I was STANDING IN IT WITH MY BARE FEET!!! It seems that ALL of this was MY FAULT according to Stephen because I should have left the commode lid up for him!! Oh...sorry...my bad!!! So you can imagine Mexican food...lid down...well...anyway...I have noticed that most of us (parents of kids with cancer here on the caringbridge site) tend to "clean up" the REAL happenings in our interesting little worlds! Sorry...guess I slipped up today!
Anway he has decide to use the sink in the bathroom now...no, I dont know why.
ALmost as quickly as he started getting sick, he stopped! Then he was fine the rest of the evening. We watched Kangeroo Jack and ate popcorn. Well...I ate most of the popcorn...
This past week went great. The kids seemed glad to get back into the loop.Mrs. Rutledge(Savannah's teacher) will be returning on Monday after her surgery. Savannah is very excited! She loves Mrs. Rutledge! STephen is still getting cards in the mail for his birthday! My friend from Arkansas (we call her Sister) and her family sent him one with money in it. Before he opened it he said "I bet money is in this one". The little turkey! HE is so rotten!
Report cards came out this week. Savannah had a great reportcard but I wont get Stephens until Monday as he was absent on Friday. I am sure he did great too.
Not much else going on around here. We have just been taking it easy.
On the bottom of this page is a link to other cancer kids websites. It is the second link I believe. The kids sites are listed by types of cancer. The one I visit most is of course the "Rhabdomyosacroma" page. Please take time to visit some of these kids sites and sign the guest book. I know it means alot to me to look on our guest book and see postings from all over the nation. The kids love it too.
Hope everyone has a great week!!!

Tuesday, January 6, 2004 5:25 AM CST

HAPPY BIRTHDAY TO YOU!!! HAPPY BIRTHDAY TO YOU!!!
Seven years ago today a beautiful (huge) baby boy was born!! I cannot believe that he is SEVEN! Time has flown! We had a small party on Saturday and a few of his buds from school and his nephews came out. We roasted hotdogs and marshmellows over a fire and the kids played on the playset and trampoline. It was SEVENTY degrees! Over night it dropped to 23 degrees! Welcome to East Texas! Pictures will be posted tonight or in the morning. I will pick them up today. They had so much fun. Stephen said that it was the best birthday he ever had! His cake was starwars and the boys played with light sabers.
The kids start back to school today. We have really enjoyed the break from both school and chemo. Stephen had to go to the dentist yesterday. It seems that chemo also causes fillings to turn loose! He had a mini -root canal and then two front teeth pulled as the new ones were already in! He did really well. They wanted to go ahead and do it yesterday because he had not had chemo in two weeks. Stephen refused the gas but he still did well. I was told LAST NIGHT that he was not going to get money from the tooth fairy this time but an electric tooth brush! I think the fairy found one in time!
STephen has received so many cards from chemo-angels all over the states and Canada! It is really exciting for him to look and see where all of the cards are from. He also got a card from Uncle Ray and Aunt Greta and it had MONEY in it!! He really liked that!
He wants his room redone for his birthday. I think we have talked him out of DRAGON BALL and maybe a jungle theme instead!! We are going to look after school today for a new bed spread. Those of you that are aware of my decorating abilities need to stop snickering now! I will at least TRY to do something and then of course I will call one of you to help!
Stephen is already up and exclaiming over his toothbrush! I told him to go back to sleep for a while but I dont think that is going to happen.
He looks so good. I dont know how much weight he has gained but he has really plumped up during the last two weeks. No dark circles and his hair is growing like wild fire! It just shows me how fast he is going to bounce back after this is over! He has so much energy! I dont know if this time is really different than the last two breaks or if I am just noticing more as we are home together now.
I have to go put some medicine on his mouth. That is the only thing...he has several sores on his mouth. I think that is strange because he has not had chemo.
Remember to check back later today for new pictures!

Monday, December 29, 2003 7:45 AM CST

Well Christmas is over and the mess remains!! The kids have so much STUFF that they dont even know what to play with!! They had a wonderful Christmas and we were able to see alot of family too. The picture is of my brother and Stephen playing Playstation. I can tell Joe is REALLY excited about the Ninja Turtle game!!
We are really enjoying our time off of chemo. We go back the on the 9th and he will have scans then. I plan to finish getting the tree down today and then just....NOTHING!! Nowhere to go and nothing to do until tonight...Karate. Savannah is spending the night with a friend and Stephen is sleeping late. It is really quiet here!
My friend Carla and her family bought the kids a DVD player for the car. They have really been riding in style! They start yelling when I kill the car that the movie stops in the SAME PLACE EVERY TIME!!! Hmmmm...do ya think that might mean that it is the same distance to town EVERY TIME!!!
Savannah got a microscope set and that seems to be what she has liked the most. We took it to one of our many family gatherings and cousin Kenny helped her get pool water (pond for those of you not raised in east Texas) to look at. They watched the little flagella or what ever it was swim around. I just hope that none of that is in our drinking water! BB guns seem to be a favorite too. They scare me!
Stephen has a birthday on the 6th so we plan to have his party this weekend. We still do not know where or when. How is that for procrastination!! It is hard being right after Christmas.
Knock on wood, we seem to have missed the flu! I guess the shots work after all! It has really been bad around here. Lots of people in the hospital.
We are looking forward to the new year. March should be the end of chemo and the beginning of a whole new world for us! I know that he will be fine it is just a little scary I guess.
Happy New Year Everyone!!!

Saturday, December 20, 2003 8:27 PM CST

It is almost Christmas! It snuck up on me! The kids did a really great job in the Christmas play. I put pictures on the album page.
Stephen got a huge package from one of his Chemo Angels and it had 12 presents in it. They are for the 12 days of Christmas. He has really enjoyed that! She even sent Savannah a gift! Yesterday he got another package from ANOTHER chemo angel and it had a bowl filled with all sorts of movie goodies such as popcorn, candy, gummies and beef sticks. In the middle was the FINDING NEMO DVD!! The kids were so happy!
Chemo was fine yesterday. He did really well and even took his Zofran last night. He did not throw up until this morning and he seemed to feel fine towards afternoon. We are really going to enjoy our two weeks off! Scans are set for the ninth. Savannah got her first set of braces off!! She looks great!
This week at school was really busy. The kids had parties on Thursday and I was subbing in Savannah's class. We just stayed home on Friday morning because I knew that they were just going to watch movies and play. Savannah went to Dallas with us on Friday so that we could stop at Medical City and see her teacher who had surgery on Tuesday. We did not get home until almost nine due to horrible traffic.
The kids really got to play on the play set today! My best friend came down with her THREE BOYS and they really had a good time on that thing!
I hope to be able to settle down this next two weeks and really enjoy being home with the kids. I get so tired of GOING all the time! Merry Christmas everyone!

Saturday, December 13, 2003 10:13 AM CST

NEWS FLASH!!! Stephen Rhodes' superhero of choice this week is now NINJA TURTLES!!! Does this latest change in loyalty COMPLETLY override what "Santa" has already bought?? YES!! Does that matter??? NO!!! Santa will still deliver Starwars and Dragon Ball artifacts. Sorry...ya just can't change your whole theme 13 days before Christmas! He is playing a Ninja Turtle playstation II game as we speak. Steve rented it yesterday and he has not stopped playing it. I nearly rolled when he came out of his room wearing this getup! I think we got this at the Dollar Store a while back. He will wear it now until it gets lost.
Chemo went well this time. Next week it is Dactinomycin only and then two weeks off!!He will be off for Christmas and the weekend before his birthday also! He has really enjoyed his play set. The weather has been so bad the last few days that he has not been able to play on it though. Chisum Elem. has been hit hard by the flu. 61 kids missing last week and several teachers. Six of those kids were out of Stephens room! My little boy with the compromised immune system is still standing! I was tempted to keep him home but I decided that he had already been exposed and all the sick ones were at home anyway! Guess that flu shot works afterall. I have been in the middle of it also and so has Savannah but we are all well. Poor little Ashley (her dad Wade sang at Stephens benefit several months ago) missed all week. Blake and Montana were out most of the week too. They came back looking so pale and tired! I am glad that we missed it (knock on wood) and hope that we are all out of the woods now.
The play is tonight. The kids are really excited! I hope all of you can make it. It starts at 6:00 PM tonight and tomorrow night.
We got to see Martin at clinic yesterday. They were so glad to see each other! Martin has only one more month of chemo left! His scans are clear and other than the loss of one kidney due to radiation he is doing fine. YOU GO MARTIN!!!

Monday, December 8, 2003 5:47 AM CST

The playhouse is finished!!! Thank you Martha Thurman and Mr. Barry! The Eagles Lodge arranged for this to be built for Stephen and he loves it! I had several pictures of it being built but my CD will not work! If I get it going I will put different pictures on the Album page. The kids keep sending poor Tia down the slide!

This week has been a good one. Counts were good and all went well at clinic. We went to the Christmas parade on Saturday morning and then to see The Haunted Mansion. That was a little much! A little too gross for me! Our tree is up (thanks Carla) and lights are on the house! Christmas is almost here!
I also have pictures of the kids getting the new belts but they are on that same CD! I think walmart just gave me a blank CD.
Stephen goes to see Dr. Graves today for his followup on his eye. They watch for cateracts due to the radiation. So far no problem.
We go to the dentist soon because he has a filling that is loose. We were told that alot of times the chemo causes the fillings to just turn loose. Interesting.
Stephen was featured in this months ATA magazine. It is called THE WAY OF TAEKWONDO and it features Stephen's story with several pictures. He was proud.
I better get these kids up for school. Have a great week everyone!
Oh I forgot!! The kids will be in a play on Saturday and Sunday nights at 6:00PM the 13th and 14th at the United Pentecostal Church in Paris. The play is called Hotel Bethlehem and it is a really lively little production! Savannah is a singing maid and Stephen is a shepherd. We would love for all of the people that keep up with us to come.

Sunday, November 30, 2003 7:09 AM CST

GUess what!!! The people are here putting up the playground!!! Stephen is so excited! I will post pictures of it as soon as it is done.
Finally got the pictures of last weeks belt testing. The homepage picture is Stephen breaking his board with one of his holders being none other than Dr. Steven Graves! The surgeon that removed his tumor!
Chemo went fine. We had to go up on the floor so that was a little stressful. He threw up in my lap...that was a little stressful also. On the way home my friend Carla called and was in Plano so we stopped and ate supper with her and her mother and sister. Stephen liked that. We ate at my favorate place..MIMI's Cafe. He did not get sick until we got home and ofcourse that lasted all night. Then we ....or I finally just got up around 3AM. He was feeling fine by afternoon. Thursday we ate Thanksgiving dinner at Papa and Danes house. Yesterday we had another TWO dinners to go to. My paternal grandmother had hers in Clarksville and then my maternal grandmother had hers here in Tigertown. We were able to visit with alot of family and eat TONS of good food. Yesterday while he was still sick, Stephen would just play a while and throw up a while. He did not let it slow him down.
This year we truly have so much to be thankful for. Stephen is responding so well to treatment...he has had no recent incedents that involved being hospitalized, he has not even had fever..not once! That is almost unheard of! I am almost finished with school..yeah!!! Savannah is smart, beautiful and healthy! So many other things!!
For a while now I have been questioning things...just wondering why...it has really bothered me and I was reading another childs website and BOOM there it was...in the form of a song. I had never heard it but here is a verse.


Sometimes He calms the storm, with a whisper “Peace, Be Still”
He can settle any sea, but it doesn’t mean He will
Sometimes He holds us close, as the winds and waves grow wild
Sometimes He calms the storm, and other times He holds His child.


Doesn't that just say it all! That just keeps going over and over in my mind.
This ride is more that half way done! Another thing to be thankful for!! March will end it!
Also on Thanksgiving day I discovered what a Ricky Williams fan that my son is! It was a little interesting with my family rooting for the beloved "BOYS" and Stephen saying "Go Ricky WIlliams"!!!
Almost forgot! Stephens buddy Nick spent the night last Monday. We were out of school all week. I will post pictures next time. They really had a good time. We went to see Brother Bear and they ate Pizza. The favorite thing to do was play the Play Station...ALOT!!!
Well that is all for now.
HAPPY THANKSGIVING!!!

Saturday, November 22, 2003 8:24 AM CST

Happy Thanksgiving! All is well on the homefront. Stephen had a good week. Last weekend he had another round with swollen ears! Go figure! We dont really think it was mosquitos this time. Red, feverish and REALLY swollen! To top that off andother child in his classroom that is an insulin dependent diabetic, ALSO developed a red swollen ear! Who knows! We went to Dr. Burns to get his counts checked just to be sure, his counts were fine. He also was having severe night sweats so that was another reason for the count check. His class went to see The Cat in the Hat on Friday. A little too much adult humor for my taste but the kids enjoyed it. He had to get his second flu shot yesterday. We made it home in time for his belt testing. I tried to talk him out of testing last night and give himself a chance to recover but NO!! He insisted!! He was required to break a board this time. Blue belt and up have to do that. He did really well...sore leg and all. Savannah tested for her Purple belt and did really great too! We were glad to get home and rest last night! It was a long day! We are hoping that the guys that are building the playground will be able to come today. Stephen is watching for them. We are out of school ALL next week!! Wishing everyone a great holiday!

Saturday, November 15, 2003 4:19 PM CST

Great week here in Texas! Counts were good and chemo went well. We were in and out of clinic in less than 2 hours! Dane just called and said that she got a deer. Stephen and Savannah are going to help her get it in. Stephen asked on the way to Dallas if Carla could go with us again soon! HAHA!! We stayed home today and really enjoyed it. The kids did not even start fighting until this afternoon. The Harlem Globe Trotters sent us tickets to the February performance in Dallas. The kids are really excited. First grade did a sign language presentation at school on Thursday. Stephen did great. The guys that were supposed to build Stephen his tree house thing did not get to come today as planned due to the rain. It stopped raining early but they did not know that. It was still raining where they were. Stephen was so disappointed. I hope it works out soon. The materials in the yard are just killing him! We found out the Stephen has to have ANOTHER flu shot. It seems that when they are under 8 they have two. A month apart. It should have been yesterday but he was not prepared for it so they let him wait until next week. Last week marked the one year anniversary of the death of my father and grandfather. They died within 5 days of each other. Then Stephen was diagnosed in April. What a year! I am looking forward to the new year. It promises to be a better one.

Saturday, November 8, 2003 4:27 PM CST

Finally got the halloween pictures on! I have new portrait pictures that were taken last Sunday and I will post one maybe tomorrow or Monday. We had a great week. It goes by so fast. I think we are having winter now! It is 47 degrees here. We had "bad"chemo this week. My friend Carla Graham went with us to Dallas yesterday. Stephen said that he likes her and she can go again! Iam sure she feels privileged! She bought him a toy at Cracker Barrell so she is his new best friend! Stephen did really good getting accessed this time. He sucked on candy and that helped. His counts were good too. When he went to the infusion room a new nurse (man) was hooking him up. All was well until it was time for dactinomycin. Instead of puting it in the IV as they usually do, the nurse unhooked it and pushed it instead. I mentioned it but he seemed sure of doing it this way. Stephen said it burned and made his port hurt. Then he threw up. We will do it the other way next time! Then the trama of getting the tape off. It was really bad this time because he was already upset about the different nurse, the different way of putting it in and just everything! It was after five when we finally left the hospital! He did agree to take Zofran before he went to bed. He did not throw up until two in the morning. I tried to get him to take some more but he said it would make him sicker. He was fine after eight for a while then started getting sick again. Now it is just come and go. He is really pale but playing. Dane and Papa came out to hunt and we are cooking vegetable soup for supper. I hope he will eat some. Savannah had a slumber party last night at her friend Katy's house.I think she had a good time. Stephen has gone to school all week without his du-rag! He is so proud! His hair is still thin but looks great! More later!

Saturday, November 1, 2003 7:33 AM CST

Finally…a quite moment to update. The retreat last weekend was great! We had a lot of fun. We slept in a cabin that had 10 twin beds in it. We went on a scavenger hunt, built a shadow box, and climbed a huge wall. Zipped down on a cable and much more. The barn and the wall climbing seemed to be the hit of the weekend. We did a little fishing too. In the barn the kids could play games, hockey was Justin and Stephens thing. Justin is the brother to Emily who is a three-year-old beauty with Wilms tumor. She is a doll. We stuck with Emily and her family most of the time. We sat around a campfire and sang songs too. It was really cold last Saturday night. We met a lot of people in the same boat as we are.
This week has been good too. Stephen has been pretty tired and went home from school one day but I think it is just tiredness. Chemo this week was kind of testy. For some reason he was really nervous and antsy. Then the emla did not work. His port was not numb and it hurt. He started throwing up when the medicine went in and he hates that. We have decided to suck on candy next time to see if that helps. Pat told us that because it goes into that big vein, they taste it and it makes most of them sick. She goes really slowly but it still does it.
Papa just came up and he has killed a deer. He woke Stephen up and is taking him to “help him” get it in. This is a tradition. Only the story gets bigger and bigger as the year wears on! It usually ends up with Stephen having to drag the deer all alone because Papa just can’t do it! Oh well!
Trick or treating went well. I had a ninja and a fifties teenager. They were cute. I will post pictures next week of Halloween. We are having a cookout at Mom and Jesse’s cabin later tonight. Oh!!! I got conformation that some men are coming on the 15th to build his playground! He is so excited! All of the chemo angels were great!! The kids recieved so many packages in the mail! Thank you so much!
I guess that is all for now.

Wednesday, October 29, 2003 5:22 AM CST

I know I know..I did'nt update...I will do a better one on Friday or Saturday. I am waiting on some pictures to be developed. We had a great time in Cleburne at the retreat! Stephen had a great week last week and his chemo on Friday went fine. He was thrilled because Steve and Savannah had to get a flu shot! I should have some really good pictures of the retreat and I will write more about it then. This week has been really hetic. The kids are still getting great stuff from the chemo angels! Another box arrived yesterday. Nannie Wanda is having her final surgery today. They are putting the rest of her skull back in. She is ready, as she says, to "have the miricle circle complete". She has absolutly no effects from her stroke! Papa is home for a couple of weeks and the kids are thrilled. Deer season starts this weekend and if you live in NE Texas you know what a big deal that is! Stephens class is having a hayride tomorrow night and that should prove to be fun! MOre later...I promise!

Saturday, October 18, 2003 7:19 AM CDT

Another Saturday at the Rhodes house! Except for having no sleep it seems to be a beautiful morning! Stephen was sick all night…and I mean ALL night. He would NOT take zofran. The trip to Dallas went well. His scans were once again CLEAR!! Just like I knew that they would be. It was nice to have the two weeks off! Now it is back to the real world. We had to be there at 8:30 so it was a long day. He still felt pretty good after chemo so we went to Wild about Harry’s again. I almost always end up having to trade my custard with him so we always get two different kinds. The chemo makes things taste different so he thinks he wants a certain kind and finds out that it doesn’t taste good. He lost a little weight again this time. Dr. Huh wasn’t really concerned about the amount that he lost but he is a little concerned about the fact that he has not gone up at all in the past several months. He wants to watch that he says. I guess it is back to the Boost! His counts were good too! On the way to Dallas we were listening to Kids Trivia (on 93.9 Koyn with Julie Mac aka Mrs. McQuistion from Karate) and Stephen called in and answered the question correctly! He was so excited! He won free tickets to the movies! We try to call in every morning but never get through. He was very proud!
This Chemo Angel thing is wonderful! My kids look forward to the mail everyday! He now has FIVE chemo angels I think! We never know what is going to be in the mail! They always include Savannah too! They are all so sweet.
When we got to the clinic yesterday we were told that Stephen had to get a flu shot. That was fine with me until they told me I had to have one too! Now anybody that knows me knows that I am a weenie! It seems that the drug company donated the medicine for not only the oncology patients to have a shot but the families also. They put emla on Stephens’s leg for the shot and I just promptly stuck my arm out and told them that there was no need for me to feel pain either! SO they put it on me too!! It did not hurt to be stuck but the medicine is so thick that my arm is super sore!! I told you I was a weenie!!! Steve and Savannah will get one next week. They will be with us because we leave for the retreat right after chemo on Friday.
We plan to stay in today and rest. I have a ton of homework and Stephen is still sick. We plan for tomorrow to be better.

Saturday, October 11, 2003 7:48 AM CDT

Finally!!! Details! I had such a hard time choosing pictures! I will try over the next few days to add a new folder to the yahoo site with more pictures.
We had a wonderful time! I cannot say enough about Make a Wish and the Give a Kid the World Village! The village is like a fairy tale! Every night when we would come back to the villa the kids would have a new toy, candy and a Disney movie! The ice-cream palace served ice cream from morning til night FREE!! The kids ate banana splits for breakfast! We were treated like royalty in every park! I don’t think we waited more than 2 minutes at any attraction. At each park we had VIP passes and the attendants would just Wisk us to the front of the line or in the back way! It will be hard to go to an amusement park without one of those babies!! Dane and Papa had a wonderful time too! At Magic Kingdom we were given VIP seating for the parades. They were beautiful! The characters would come right up to the kids. Aerial kissed Stephen but I am not supposed to say that! Nick Studios at Universal Studios was fantastic! We toured backstage and the kids had VIP passes around their necks. Savannah got to play a game in game lab and won the game for her team! Stephen was slimed and that stuff IS SLIMY!!!! GROSS!! He loved it! It is overwhelming to try to tell about it all! The plane ride was fine (of course I am terrified of flying) and everyone was so nice to us. It was strange coming back to the REAL world! We did not have to go to Dallas yesterday after all…it worked out that he can have his scans next Friday with his chemo. It is amazing what a week with out chemo and a week in Florida will do for you. Stephen has color in his face and LOTS of energy! I hate to get back to chemo. At universal the Blues Brothers and Ghost Busters were driving around in their cars. When they saw Stephens badge (make a wish) they stopped and talked to him. All of the parks were great but Universal seemed to be the most accommodating. I would love to know what kind of staff meetings they have and what is said about Wish kids!! I know that this is short but like I said it is hard to think of everything that happened! It really was a Wish come true! Thank you make a Wish and Thank you Give a Kid the World Village!

Thursday, October 9, 2003 5:50 AM CDT

YES!!! We are back home! I know you are all waiting for an update but this will have to do for today. I will get the pictures developed today and post again hopefully tomorrow as I am trying to get the clinic to change his scans to NEXT friday so that we can truly have our TWO fridays off! WE had a great time!! EXHAUSTED!!
STephen tested for his purple belt on Tuesday before we left! He was in rare form! I think it might have been dut to the fact that he did not have vinecristine that week! He lookd like his old self! Mr. Hale was impressed!
These pictures are the day before we left. The make a wish foundation sent he and Savannah this huge box of nick stuff! They enjoyed making it look like they had sneezed..well you get the picture...I promise to give the details as soon as possible! Give a kid the world villege is a dream land! Endless icecream, beautiful villas, gingerbread house and a rabbit for a mayor! More tomorrow....

Saturday, September 27, 2003 5:30 AM CDT

Only six more days til Disney World!! Time has flown by! We had a great week. Chemo went well also. He had dactinomycin this week so that ment tape. He got really nervous and cried a little but it came off so easily this time that he was surprised! The hypofix really is not that sticky but it still pulls a little. This time he let the nurse put tape remover over it and it worked!! Instead of getting himself a prize from the prize room he got Savannah a beanie-baby. Thoughtful little brother! My best friends daughter Danielle went with us this time. She will be 15 on the 11th of October. We had a really good trip. I think I want her to go with me every Friday! I have some pictures but they are on my regular camera and have to be developed. I will try to do that today. Stephen wanted Red Lobster so away we went. Then he got sick when the food came and ate nothing! Belt testing with karate was last night and when we got into town he said he felt like going by to watch Savannah. It was strange with him not being in uniform. He will test on Tuesday. We watched Savanah who did GREAT! Then the mosquitoes came out! We left and came home. He has not been sick again so far! He was wore out though. This is the first time that Danielle has seen him since he was diagnosed. She said that he looked alot different. She was very interested in the treatment process as she sat in the infusion room with us. Lots of blood transfusions were going on yesterday. Mostly sickle-cell kids. Danielle is homeschooled and I told her that would be a great reasearch paper for her. I am interested to see what she comes up with. We stopped at Target so that he could use his money. He bought a Game boy game. Medabots. I think he and Danielle got it figured out! I am trying to talk the clinic into changing his scans to the 17th which is his next chemo date. They have it set for the 10th which will cut into our 2 fridays off! They are supposed to call me. OH!! I forgot! The make a wish lady called this week and told us that we WILL get to be in the audience of SLIME TIME LIVE!! ORiginally we were told that we would have the VIP tour but under 10 were not allowed in the audiance. They are going to make an exception and he will do both! He is very excited! I doubt that I will update this weekend. We will be back on Wednesday of next week but unless I take the lap top everyone will have to wait for t he Disney report.
Savannah made TWO UIL teams this time. She will be in Ready Writing and also Listening Skills! She is excited about that. The picture on the home page is of our Nurse Kay at school and her mother. "Granny Landers" has been a source of Stephen's cool du-rags. She bought him this one to wear to Florida so that everyone would know that he was from TEXAS! She is so sweet! Stephen is still enjoying his "Chemo Angel". She is very faithful in sending things in the mail. I will take pictures of the kids in new karate belts this week also. Savannah will be a green belt and stephen a purple belt. The form that he has to test on this week is very long (34 moves) and he still needs practice. I hope he feels well today so that he can practice. I think that just about covers it. I will post the other pictures as soon as I get them.

PS I have added new pictures to the yahoo album. The link is at the bottom of the home page.

Sunday, September 21, 2003 6:06 AM CDT

Great counts this week! When we left chemo Stephen decided that he needed a chocolate chip pancake from IHOP so away we went. He ate almost all of it too! Only 2 more weeks til Disney world!! This picture is of Stephens nurse Miss Pat. She is great fun and has done his access the last 2 times. She is a nurse practitioner.
This week has gone by really fast. It has really cooled off a lot here. I hate to drag out fall clothes but I am glad for the cooler weather.
Stephen was adopted by an organization called "chemo angels" and has received a couple of packages in the mail. He loved that! The lady even sent Savannah something also! Steve is in the hospital now! He probably has another slipped or ruptured disk. He could not even walk Thursday morning so in he went! Hope to get everything resolved this weekend.
Not much going on around here this week. It has been pleasantly boring! Belt testing in karate is this Friday but Stephen will not be able to attend due to chemo. I guess he will test early or after the fact. Savannah will be able to test for her green belt! Little Dee Newsom (from karate) had a birthday this week. Happy Birthday Dee!!
I found out this week that Stephen is O+ so I can donate for him if need be. It still makes me nervous to think about him getting blood from a stranger. I know…I know…it is tested and tested again but still…. oh well…it is that control issue you know. I am working on that.
I know this is short but really…not much is going on…until next time…
P.S. Keep posting in the guest book...Stephen loves to see those.

Saturday, September 13, 2003 8:30 AM CDT

Boy this week has gone by fast! Stephen felt better this week and continues to enjoy school. Papa went back to Mississippi and the kids’ hate when he has to go. It wont be too long before he comes home for good!
Stephen had a wonderful time yesterday. He had been so sad all week because he was going to have to miss the homecoming pep-rally. We would be in Dallas during that time. Mr. Patterson (principle at the high school) told me to bring him over before we left for Dallas and he would get together some of the football players and cheerleaders. Stephen was so funny! At six years old you MUST pretend that you do not like girls! He loved it! This group of kids gathered around him and we took pictures. Lisa Justiss took some really good ones with her camera and as soon as I get hers I will post them. The ones that I took are a little dark. He was worried about not getting a ribbon to wear and they got him one of those too. I find it interesting that the younger kids really look up to these football players and cheerleaders. They are celebrities to them! A special thank-you to Chisum High school for making Stephens day!!
Counts were great this week. Our big problem is MOSQUITO bites!! I do not know what to do! It seems that these little buggers love chemo! Only now (never before) Stephen has horrible reactions to the bites! Poor baby! Now one has bitten his ear and it is the size of a dinner plate! One on his arm is really huge too. The doctor gave him a different kind of antihistamine to reduce the swelling and itching. Again I have to watch him for infection but so far so good. We found one mosquito in the house and I saw one in my van too! Then we get to school and one is in the classroom! I think they follow him! Steve has even suggested a mosquito net for his bed! If anyone has any suggestions for this problem let me know. When you live in northeast-Texas it is kind of hard to get rid of all of them!
Stephen and his friend Nick have been planning a sleepover for a while now. It nearly killed me but I took him to Nicks when we got back yesterday evening. I talked to Cindy (Nicks mom) about 10:30 last night and they had just got home from bowling!! I assume he was feeling fine! I know he is having so much fun. Poor kid looked wiped out when I dropped him off because of the benedril and he was flopping his feet due to vinecristine but other than that he was just a regular kid spending the night with his buddy. This is the first sleepover that he has ever had. I know that Cindy will watch him like a hawk and that he needs to do things like this and be a regular kid but I just like to have him where I can look at him and feel his head. That makes no sense does it?
Just two more treatments and we will have two weeks off of chemo!! During that time we will go to Disney World with the Make a wish foundation. The kids are so excited!! I am excited too only I hate to fly!
We saw Stephens buddy Martin at the clinic this week! He was having a blood transfusion and his big chemo treatment this week. He has fuzz on his head too!! Poor Martin was going to be there all day as opposed to our 2 hours. The picture that I took of them is a little blurry for some reason.
Savannah is really getting the hang of her flute. She noticed the flute players at the pep-rally yesterday and has aspirations of playing like that some day.
Well, that is all I can think of for now…Stephen will be home later and I am ready!

Saturday, September 6, 2003 7:51 AM CDT

Washed in the Blood of the Lamb!! Stephen was baptized last Sunday night. His whole family, including his sister Stephi were present. The only pictures that I have with the digital camera are from behind but I have not developed the other pictures that were from the front view yet. I will put them on when I get them. When he came back to me to change clothes he said "Mama, now my name is Stephen Samuel Rhodes Jesus Christ!" He really listens in sundayschool! He was refering to, just as a bride in the natural takes on the name of her groom, we as the "Bride of Christ" take on the name of Jesus when we are baptized. It was very touching. I will put some other pictures of the baptism on the yahoo site.
THe past week has been good. I think his counts were down towards the middle of the week due to his lack of energy and pale face. He perked up some towards friday. I was afraid that he was getting a cold but he continued to get better. Steve worked in Stephen's classroom on Wednesday and Stephen was so proud! The kids really like it when parents work and a DAD is really cool! He got his first stripe on his green belt this week. He improved his jump side kicks and his Cresent kick and was really proud. I have noticed that karate is not coming as easy for him due to Vincristine. His reflexes and just basic coordination are messed up. Savannah got her first stripe last week and is working on getting her second in the Camo form. She got her flute thanks to Aunt Cathy organizing that for us and is really happy about that. Sunday night after church we went to Dane and Papa’s house for pizza. They brought out the karaoke machine and along with friends Jimbo and Lisa Thompson we had a ball. I got some good pictures of Stephen and Papa singing a duet. I got some other pic too and will post those on the yahoo site.
Dane and Papa went with us to Dallas this week. Stephen had more trouble this time than he ever has. I don’t know what the trouble was. He had vinecristine first and then while he was in the infusion room getting zofran (for nausea) he started crying about his leg and jaw hurting (side effects of vinecristine) only that never happens until later in the night. Infact, it has not even happened in several weeks. The nurse had to give him ibuprofen. Then he instantly got sick at his stomach when he started the Dactinomycin. He got very pale and his eye got red. Again, none of that usually happens until later in the night. We started to leave and he was walking on his toes and tripping really bad. Don’t know why everything was so different. He still would not let Dane or Papa go in when he was accessed. He has a tough image to keep up and he is afraid he might cry you see. He was pretty sick in the night and is still sick this morning. He is having another problem with the mosquito bite thing. I guess we had a mosquito in the house the other night because it bit him twice on the head and then on the arm. They are infected just like last time on his leg but not as bad. We are supposed to watch and if they start streaking we have to call back for another antibiotic. The ones on his head were swelled up really huge Thursday night. They were better yesterday.
A few weeks ago the Eagles Lodge in Paris contacted me about doing something special for Stephen. They have a Wish foundation. I told them that he was already going to Disney World with the Make a Wish Foundation but they said they were a different organization and it would not keep another child from getting a wish if they did something for Stephen. He decided that he wanted a big playground. Well…yesterday Miss Martha and another couple delivered a huge load of lumber and tube slide and climbing wall…and I don’t know what all! She told Steve that she was getting the “Motorcycle Guys” together and they would be back to build it! I will post later on who donated the material. I am not sure right now and I don’t want to say the wrong people. Stephen was so excited when we got home and he saw all of the stuff!! He was so sick that he could not enjoy it right then but he will!! It is amazing how generous people are!! I will take lots of pictures when they come to build it.
Savannah was able to go with a friend to Dallas last night for the little girls birthday. They were going to Medieval Times. They were so excited! That is the first time I have let her go that far without me…sigh…she will be fine.
Mrs. Sanders gave Stephen a Smiley face du-rag this week. He put it on in the car as we left for Dallas. Earlier in the week Miss Kay (nurse at Chisum) gave him a new du-rag from her mother. It has flag colors on it and is really cute. He loved that too. Mrs. Sanders also made him a book with pictures of the class and of them doing different activities. It was for him to have with him when he goes to chemo to remind him that his friends are thinking of him. He really enjoyed that. They are learning sign language this year and he is so proud of it!
I need to go take care of my boy now but on a happy note…my cousin Heather Barnes was elected Homecoming Queen at the Prairie Land Homecoming game last night! I plan to get a picture and post it on the yahoo site! She is a beautiful little Pentecostal girl that dresses modestly and lives a consecrated life. She is an inspiration to our youth group. I am so proud of her as were her Uncle Stacy and Aunt Tessie! More later…


PS. We lost another tooth on the way home from Dallas!!

Saturday, August 30, 2003 6:58 AM CDT

Great week!! Other than mouth sores and my forgetting to leave the medicine for it at at school (thanks Dane) we have had no problems this week! Our trip to Dallas yesterday was quick again. We stopped at Wild about Harry's and got a custard after chemo and before his radiation follow-up. That is some good stuff!! The kids have been on goat duty this week and have enjoyed that. We let Homer cut off Stephens fuzz this week also. It looks alot better. Usually when he gets a buzz his hair will be really stiff and prickly to rub. Now it is as soft as a babys head. I love it. Maybe now it will grow in even and thicker. Counts were good again. Radiation gave a good report also.No problems with port access either. Things are going so smooth! His next scans are set for Oct. 10. Next week is both chemos and I think Dane and Papa are going with us. Stephen is going to be Baptized this Sunday night. He has been wanting to do this for a long time. Even before all of this mess. I put him off because I thought that he was too young. One of his sunday school teachers (Cynthia Brown) told me sonething that made sense. She said that we drill salvation and Baptism into them from the time that they are babies so of course they will want to do this. She also said that even if he was too young he could always do it again later. I agree. Although he really seems to have a good grasp on what it is all about. He quotes Acts 2:38 and explains what it means. And tells me that baptism symbolizes washing away of sins. He has also told me that nobody in the bible was ever baptized any other way except in Jesus name!! Talk about some good sunday school and childrens church teachers!! I think he is ready. Savannah was baptized when she was in second grade and I knew that she was ready then. First grade is going great. He is reading like a champ! He is so proud of that too! He took his first AR test this week and made a 100! He has heard Savannah for years talk of AR and he could not wait! He reads a book every night and then takes a test on the computer over the story the next day. This is a HUGE deal at Chisum. The PTO even gives the kis a check at the end of the year according to how many points they have. Steve had a birthday on the 27th. The kids gave him a radio controlled boat and when it cools off some they are going to take it to Nannies pool and give it a work out. They put it in our swimming pool already but I think it will be more fun in a bigger area. Stephen is afraid a catfish will eat it! I stopped at the Mennonite bake shop and got a choc. fudge cake...oh my...it was soooo good!! His nurse Pat told us about a family retreat in late October that we will try to go to. It is close to Waco I think. It is the same camp ground that holds camp Esporanza (sp) every year for kids with cancer. The whole family goes to the retreat and gets to see how the camp will work. It is run by Doctors, nurses and child life specialist. The kids can go when they are seven and they are gone for a week. They receive their chemo and meds just like they are at the clinic. I dont know for sure if I could let him go to the camp but we will see. Stephen took his new Harley hand game that Lisa Justiss gave him to chemo with us. I kept thinking that a motor cycle was behind us when he would turn it on. It so quiet here! Everyone is still asleep so I am going to go try to do some homework and take advantage of it!

Saturday, August 23, 2003 6:59 AM CDT

Monday August 18,2003

We have had a rough weekend. Stephen was sick most of the weekend but would play in-between throwing up. They start school today and I am nervous about that. He just has a terrible time taking zofran. I don’t know why. I have the dissolvable kind and the pills too and he still balks. I put the
dissolvable tablet in a small bite of applesauce and he cannot even taste it but he still doesn’t want it. Last night he was so tired of being sick that he DID take one and slept well. I told him that today at school he would have to take or he would have to leave school if he got sick. He said that he would. We will see. He finally ate some grapes yesterday afternoon and I thought that he was better. We left to go back to church and he threw them up. After church he was sure that he could eat popcorn chicken from the Sonic. Would you believe that I went to BOTH Sonics in Paris and neither of them had popcorn chicken!! He cried and cried! When he says he is hungry for something I try to get it but in this case there was nothing that I could do. It was probably a good thing though because he ended up eating nothing and feeling sick again. He wanted to have Bro. Myre pray for him so we went up last night and let him. He was so funny though. He said, “I want him to pray for me but does he have to use that oil??? It stinks!!” HAHA! I imagine that I will spend the day at the school today just to make sure he does all right. I think Savannah is a little nervous about starting 5th grade. She has a great teacher and will be fine I am sure. I think that I have decided to make his chemo appointments for the afternoon from now on so that he can at least go to school for a couple of hours in the mornings on Fridays. I will just have to see how that goes.

Tuesday August 19, 2003

The kids had really good days yesterday. Stephen did not get sick all day and Savannah seems to really like her class. I stayed at the school most of the day just to be sure. Yes, I am one of “THOSE” parents. Stephen was really excited about the reading aspect of first grade. He wanted to take his book that he brought home to bed with him to read. I hope he stays this excited!! His class is full of really good kids and I hope he keeps his “100 conduct grade” on the board all year!

Friday August 22, 2003

We have had a really good week. Stephen is still excited about 1st grade and told me yesterday that he learned three new words. Two little girls as well as his music teacher have been out with a stomach virus so that was a little alarming. I guess this will just be the way it is for a while. I can’t keep him in a bubble. His counts were good last Friday so he will be all right. I am going to let him go to school until ten this morning and then we will leave for Dallas. I don’t want him to miss any more school than necessary. Savannah decided that she wanted to be in band after all. So I am on the lookout for an instrument. She thinks she wants to play the clarinet or the flute. We are getting Stephen a chest protector for karate. After the scare last week with his port I don’t want to take any chances on injury. He decided not to get his hair buzzed after all. He just wants to see what happens with it. It is his head so we left it. He is a little nervous about his port being accessed this week. I told him we would sit up really straight and hold his arm up really good and he would be fine.

Saturday August 23,2003

Good counts again this week! I am so glad that we don’t seem to have to worry about counts like a lot of kids on chemo! Most kids have already had to have transfusions by this time! Port access went very smooth. He was terribly concerned about it and cried a little before she accessed him but the access was successful and he was fine afterwards. This was the fastest trip ever! We were out of the office by 1:30 and our appt. was at 12:00!!! We went for ice cream and stopped at Target on the way home and were still home by 5:30! We are getting really good at this. Now that we can have the emla cream at home and not wait to have it put on at the clinic our time may be shorter every time. He is really having problems with those mouth sores but it is to be expected. He has absolutely NO reflexes. When the doctor checked him yesterday he had NONE! Poor kid. Like a six year old isn’t clumsy enough without vinecristine taking away your reflexes. Both kids really enjoyed the first week of school. Savannah spent the night with Dane last night and Stephen wasn’t too sure about that. The picture of Stephen with the peacock feather was just too cute. Papa sent these feathers to Stephen and Savannah and told them that he pulled them out of a peacock just for them. Somehow Stephen was under the impression that you were supposed to balance them on your nose. He practiced this until he mastered it. My son is very talented as you can see! I wanted to rub his face down with antibacterial gel but he did not think so. Quick report on Nannie Wanda: She went for physical therapy and was told that she did not need it! She is just doing great! Truly a miracle!

Saturday, August 16, 2003 8:05 AM CDT

Counts were good again!! This is a good thing because I think Stephen was exposed to chickenpox. It seems that his immunization to this virus was not effective so I will have to watch him. Apparently it is a big deal for a chemo kid to get chicken pox. We had a trying day at chemo this week. When the nurse accessed his port she got blood return just like she should have but when she started flushing it with saline he started crying and saying that it burned and that something was wrong. He has never done that before. She stopped and tried to get blood return again to no avail. This is is not good because that means that something is wrong with the port. Poor Stephen. He tried to be brave but it was just too much for him. She de-accessed the port and put it in again. He was hysterical at this point. It still would not flush or give return. The doctor came in and ordered an x-ray. Stephen was full of questions (he is a thinker) and I had no answers. Sitting and waiting on the results was nerve wracking. I knew that if something was wrong with the port that would mean surgery to correct it. Things have been so smooth and he starts school on Monday so I was sweating it. Dr. Huh came in and told us that the x-ray did not show any kinks or disengaging so that it could be a blood clot or possibly the port just got in a weird position. He wanted to put his chemo in his hand and Do a port scan on Monday. I told him no. What ever we were going to do lets do it now. I did not want him to miss school if at all possible. We decided to try the access one more time. For all you parents of cancer kids out there….EMLA DOES NOT LAST FOR TWO HOURS LIKE YOU ARE TOLD!!!! I told Stephen that his port was still numb and it WAS NOT!! He was broken hearted because he thought I had lied to him. He felt the access and it hurt! I felt so bad for him! I will know from now on! GOOD NEWS!!! It worked that time! The port must have been turned wrong or up against the chest wall. When she accessed it this time she got blood return was able to flush it! I was so happy!! Stephen was still stressed but I was thrilled! He got vincristine and then they hooked up the IV and we went to the infusion room to get Zofran and Dactinomycin. He got to get TWO prizes out of the prize room! He chose to get something for Savannah with his second choice. Thought that was sweet. By this time it is after five o’clock and we are both starving because we did not eat lunch. I was so glad that he was hungry so we stopped and ate before we went home. On a more normal note…Stephen lost a tooth this week! He used his tooth fairy money to buy a pair of skate shoes (spider man) that were on clearance at Target. He has really wanted a pair. We went to open house at school on Thursday. He was so happy to see his friends! I think he is going to have a really good year. We took it easy this week and did not do much of anything. We are debating the hair issue. He has some hair now but it is so thin and fuzzy that it makes him look sicker than if he were bald! We were told that it would fall out again but it is still hanging on! I asked him if he wanted to keep it or get a buzz and he opted for a buzz. I think Steve is going to take him to Homer today to get that done. The nurse told us yesterday that if it did not fall out it still would not get any thicker. He is ready for a real head of hair! He is really concerned about his looks. He asked Steve if he thought that he looked different and told him that he thought his face looked different. He is worried about his eye drooping and not having an eyebrow. I hate that he worries about things like that. We just keep telling him that he is beautiful and he is! Nannie Wanda update: She is doing so good! She has always gone to the local food bank and delivered food to the families in our community that need it. Last week she had Paul David (PB) drive her around and deliver food!! She is BACK!! She is truly a miracle! The goats are happy to have her back too! Steve took Savannah and Stephen to see “Freaky Friday” last week and gave me some much-needed time to myself. They really enjoyed it. Stephen just woke up and told me he felt sick. I told him I would get his Zofran and he said no. I told him that he would feel sick until he took it and he said “no I wont I am going to pray!” I guess he told me!!! I guess that is about all that is going on with us right now. More later…

Sunday, August 10, 2003 7:25 AM CDT

We ended this week with a bang!! Stephens’s counts were great! His ANC was over 2300!! Nannie Wanda continues to improve and we give God the praise for that! Stephen is still growing hair! He is still not comfortable going without head covering yet though! They told us he would lose it again but not so far! The circus and Rodeo were great! The kids had a ball. This will be the last week before school starts and I hope we get to relax and have fun. Usually the weeks that he just has vinecristine he doesn’t get sick but he got sick last night. Maybe he was just tired. He got his package in the mail from cousin Shannon Morgan and family! The coveted “skull and cross bones” du-rag! They also sent Savannah a check for $20.00 and she got to spend some of it this weekend! Chandler (grandson) celebrated his 6th birthday this week (the 5th)! HAPPY BIRTHDAY CHAN-MAN!! HE and Parker are really growing up. Oh… I almost forgot! They said Stephen gained EIGHT pounds this week! We can’t really figure that one out! They called and asked me if he was on steroids and I said no so they think maybe a mistake was made when he was weighed last week. He eats nothing to speak of but drinks boost. Who knows! I just like saying he gained eight pounds! Misty (works with my mom and Stephen has a crush on her) was at the rodeo with us. Reily was sitting with her and Stephen got jealous so he went and sat in her lap! The kids both got letters from their teachers. They LOVE to get mail! It is going to be interesting getting back into the swing of school again! I will go to Commerce 2 days a week but will be back before school is out. I am glad that I will still get to work a couple of days a week. The kids have their school supplies (thanks Aunt Doris Sue!) and we got some school clothes this weekend. Dane bought Stephen new cowboy boots to wear to the rodeo. I talked him into getting black (he wanted GREEN alligator) FINALLY! I hate that he will get both chemos the weekend before school starts but maybe he will have time to get over it. I think he is looking forward to getting back to his friends. When we walked up to the circus door it was SO hot! I could tell that Stephen was fading fast and they doors were still shut. I walked to the front of the line and knocked on the door and thankfully and very nice lady opened it. I told her that due to chemo Stephen could not handle the heat. She let us in thank goodness! In a few minutes a lady with a head covering walked it with the same look on her face that Stephen had! She looked right at Stephen and said “Whew! That chemo will getcha huh!” Stephen smiled and they talked about chemo and mouth sores. She was so sweet to him and I did not even get her name or a picture! She did say she was getting treatment at MD Anderson. Well I better get ready for church. More next week!

Saturday, August 2, 2003 8:10 AM CDT

NANNIE WANDA IS COMING HOME TODAY!!! The kids, the community and of course the GOATS are happy! We went to see her yesterday and she was doing GREAT! She was wearing her du-rag that Stephen bought her so I took this picture. God is so good! Poor Freddie (Billie) had “surgery” this week so he is not quite as spry! Poor baby goat! We have had a great week. We are going to go to the Paris Rodeo tonight and the kids are really excited. Mom is not. It is so hot! I put new pictures on the album page. The kids had a picture taken at Karate a couple of weeks ago and I put the one of them together on. Stephen got his first mailed package this week. Our friend Erin Johnston that is in the Airforce stationed in Iraq sent him an official Arab head piece, (picture on the album page) a prayer rug which he uses every night when he prays, and two stuffed camels (one for Savannah). He felt so grown up opening that box! We will be going to the CIRCUS next week when we go for chemo and also the Mesquite Rodeo! It is nice to say “yes we will be going for chemo today but…we are going to do something fun too”! Chemo went well this week. Just Vinecristine. His counts were good also. He was very happy not to have TAPE this time. That is the worst part for Stephen. Putting tape on the port after it is accessed when he has dactinomycin is a must because he has to have Zofran thru his IV so it takes a while and could come out. The tape really irritates his skin and hurts when it comes off so it is a HUGE ordeal. Next time they are going to use hypofix (a kind of gauzy tape that sticks lightly. We hope this solves the problem. The little girl that I spoke of last week (Kiley) got the results of her CF test back and thank God they were negative! Kids revival went well at church this week. The kids really enjoyed it. School will be starting on the 18th and I wonder how it will all work. I just keep putting it out of my mind. I know he will have to miss most Fridays but he has a wonderful teacher (Mrs. Carla Sanders) that will work with us in every way so it should be fine. His appetite has not been much this week. He will drink Boost so I fix that for him everyday. I heard from our friend Brooke (www.hiebertttwins.com) this week and she is doing great as well! She is still pretty much housebound but getting better everyday. Her twin brother will have a bone marrow transplant in the near future. I think that just about covers this week. Until next time…

Saturday, July 26, 2003 8:46 AM CDT

Hello all! This week went by fast! We went to Dallas Thursday evening and stopped to see Nannie Wanda at Baylor on our way to RMH. She is doing so good! Aside from an interesting hair-do and being a little slow of speech and thought, she looked great! They moved her to rehab yessterday and think she is on the road to a full recovery! Pretty good for the hopeless case that she was supposed to be huh! I hope to take some pictures of she and Stephen together next friday when we go back. Stephen was so glad to see his friends at the RMH! Jordan(bone marrow transplant) now has BLACK hair! He had none the last time we saw him! He was glad to see Martin also! Martin is 7 years old with Rhabdomyosarcoma also. His is a different type than Stephens and presented in a tumor (huge) in and around his intestines. The mom was originally told it would not come out but on July the first they removed all but a golf ball size portion!! He is so cute! Stephen had his first set of scans and they were CLEAR!! We expected nothing less but it was great to hear the words! His counts were a little lower than last time but still good. He got both kinds of chemo and we thought we were going to get away with no sickness but last night he started getting sick. He is still asleep this morning so I hope that it is over. We met a cute little girl in x-ray that was being tested for Cystic fibrosis ( in the SEVEN HOURS that we ended up spending at the hospital). Her name was Keiley (sp) so please keep her in your prayers. Stephi and the boys came out this week and the kids had a ball. So did the goats! A lady that has been posting on Stephens site (Rita) was in Paris visiting family and brought Stephen a package from the children in her church. Stephen was thrilled! It was a Hulk lunch box and pictures that the children had drawn for him. People are so wonderful to him! I was glad to get a picture of Dr. Huh and Dr. Journeycake with Stephen. Dr. Journeycake is the first Doctor that Dr. Graves talked to when he started making arrangements for us to go to Dallas. Dr. Winston Huh is the Fellow that takes care of Stephen. He is a wonderful guy and Stephen really looks forward to seeing him each week. The little boy Brandon Panamino that I requested everyone pray for a few weeks ago is doing better. He is nolonger in a coma and seems to be responding more and more. His mom is still at RMH and looked exhausted but hopeful! Brandon is the same age as Stephen and was hit by a truck while riding his bike. He has a severe brain injury and from what I understand the parents were told that he would not get any better a month ago. He is unable to speak due to the respirator but motions with his hands and even attemts to dance in the bed! Pretty good for a kid that was supposed to be unresponsive forever! Not much nmore to talk about so I will go. Please continue to pray for the people that I have spoken about on this site and of course for our family. Until next week....

Friday, July 18, 2003 4:48 PM CDT

Poor Tia!! I doubt that she wanted to swim today!! We have had a good week. Happy birthday to my grandmother!! We are going to her house tonight to celebrate. The kids are excited,we have a cake and icecream. Nannie Wanda is still improving. She is awake but still has the respirator so communication is limited. The plan is to take her off of the vent this weekend and hopefully rehab next week. The doctors are really positive and PB is really encouraged! We have custody of the goats still and the kids love it! That baby goat really shows off alot We enjoyed another friday without chemo but next week we will have to be in Dallas at 8:15 for scans and both kinds of chemo. Stephen and Savannah tested last week for their new belts in Taekwondo. Stephen is now a green belt and Savannah is a camo belt. They both did really well in the testing. It is so hot! I worry about Stephen being in the pool in the heat but most of the time he seems fine. When he has had enough he comes in the house so I guess he knows his limits. The other day Steve had the kids in the car and they were drinking cokes. THe subject came up of how Stephens'taste had changed and Steve asked him if he smelled the same as he used to. Stephen was very thoughtful for a minute and then he said "well, how did I used to smell?" Poor Stephen! I guess he wondered if he used to stink! Steve thought that was very funny and decided that he needed to be a little more clear next time! The other day we were in walmart and Stephen was acting ugly because I would not let him go look at a Dragon ball game. We ran into a friend of mine (Brenda Ladell) and before I knew it she had given him 15 dollars to put with his five to get the game!! NOw mind you I was trying to prove a point that his behavior was getting him nowhere! I told her that was going to come back on her!! Stephen was happy though! Then we get over to the games and I thought I was still going to get to prove my point because the game was twenty nine dollars not 19 like we had thought. Lo and behold but Mrs. Arnold (school secretary) was in the electronics dept. and took him to the cash register and finished buying the silly game for him! He is rotten!! It has been a good tool for behavior though...I have been able to take it away from him several times now! Poor Brenda could not remember what the game was called and kept calling it the wrong thing and Stephen thought that was very funny! On the same day I bought poor Savannah ( standing quietly through all of this) a beta fish. It promptly died the next morning! Steve took her to buy another one though..he is still alive as of yet. More of the Rhodes saga later!

Friday, July 11, 2003 6:35 AM CDT

Hello all! I have had a busy week..started back to school and forgot how busy and stressed it makes me! Oh well...it will be over soon. Stephen is doing really well. He test tonight for his green belt and Savannah for her Camo belt! They are really excited! It will be at 7:00Pm tonight at Wades Park. With the mosquitos and heat I hope it goes quickly! We are going to enjoy this week and next as Stephen will not have chemo until the 25th! Every 9th week the following two weeks are chemo free then he goes back that third week for scans and both kinds of chemo. I have no doubt that his scans will be totally clear.Unfortunately, we will be going to Dallas either today or tomorrow as our neighbor Elwanda Blackshear, had a massive stroke last Sunday evening. Stephen and Savannah call her Nannie Wanda. Remember the pictures of the goats? Those are Nannie Wanda’s goats. It was a total shock and the kids have been really unsettled about it. God is working a miracle though… she had a cerebral bleed that was pretty bad and they care flighted her to Baylor to do surgery. She was pretty stable then started to bleed again on Tuesday. More surgery and this time the prognosis was dismal. The following morning after much prayer and faith, Nannie Wanda made a real turnaround! The Doctor told Paul David (P.B.) that she had movement in all parts of her body and her eyes were responding to light! Just the night before they were given virtually no hope of that! Praise God!! I told Stephen and he said, “I told you I was praying!” The kids have been taking care of the goats for them. That baby goat sure misses Paul David! He thinks he is a small puppy or something! It will jump right up in your lap! I told Stephen that Nannie Wanda was going to need some do-rags when she wakes up because they had to shave off a lot of her hair and he insisted that we go to the Harley Shop to pick one up for her! I can just see Nannie Wanda with a Harley Do-rag on mowing the yard! It should be interesting! Stephen had a lot of fun at the birthday party for Blake last weekend. He got to shoot a “potato gun” that Blake’s daddy had. I put a picture of that on the yahoo album that is linked at the bottom of this page. He has been complaining of a stabbing pain in his port. Don’t know what that is about. It isn’t constant and does not really slow him down but I need to mention it to the Doctor. The kids really enjoyed getting to spend a lot of time with Papa last week. Doesn’t this picture look like three turtles in a pool??? Papa is really a big kid and the kids like that a lot! I guess I should go try to finish some of these projects while the kids are still asleep. I will try to update a little more often. I love having only good things to tell! God is Good!

Saturday, July 5, 2003 6:48 AM CDT

A great weekend!! We went to Dallas On Thursday and Papa went with us. We had a good time. We ate at Razzoos (sp) and it was really good. Stephen had dactinomycin which usually would make him really sick. They infused him with zofran before they gave him the chemo and he did not get sick even once! He slept all the way home and has looked a litte more pale than usual but other than that he looks great! We get two whole weeks off of chemo! Every ninth week we will have the next two weeks off. He will have scans done when we go back on the 25th and I fully expect all to be fine. We stayed at Dane and Papa's house and watched the fireworks on Thursday night and then the kids and the men (as if there were any difference in the two) popped fireworks. They had alot of fun. We ate hotdogs too. On Friday the kids were in the Parade on the Karate for Kids float. I was afraid that Stephen would get too hot but all of the adults were watching out for him. He ended up riding in the cab of the truck that was pulling his float and it was driven by Ms. Dixie Graves (wife to Dr. Graves that took out his tumor) so you cant get much better than that! His eye started looking really red and bloodshot on Friday morning so when the parade was over Dr. graves met me at his office (on the 4th of July) and gave me some more steroid drops. We are so lucky to have such great people around us. The kids have been attending Bible school at the Maxey Baptist Church where my grandmother attends church. They have had a ball.A couple of years ago when Stephen was first old enough to go to Bible school, he was really impressed with the pastor of that church. His name is Brother Billie. Stephen was trying to explain to me who it was that he liked so much. He said, “You know mama, that really fat singer guy”! Brother Billie sings and plays a guitar and I suppose he is a little “healthy”. Someone told him what Stephen had said and thankfully he has a great since of humor!!! Honesty of children! Brother Billie has a website and has included pictures of the Bible School activities. The address is http://www.ullrichministries.org/. After the ending ceremonies on Friday, we stayed for hamburgers and a fireworks display. Only when we sat down for the fireworks it started pouring rain! They did manage to set off a lot of the fireworks but it really poured down. We still had a really good time. The kids were disappointed because we were supposed to go to Aunt Charlotte and Uncle Rorry’s house after that and shoot more fireworks but it was so late and pouring rain. Today we are supposed to go to my grandmother’s house for chicken and dumplings!! Needless to say I am having a little trouble getting off the ten pounds that I gained at the Ronald McDonald House! Stephen also has Blake’s birthday party this evening so we have a full day planned. I have included a new link at the bottom of this page. It is a yahoo album page and I put some of the past pictures that have been on the website and some others too. The mosquito bite resolved its self thank goodness. We are just trying to be careful about getting any more bites! Like that is easy living in northeast Texas! I am changing the pictures today too. I am including at least one of Stephen with his port accessed. I have never had pictures of that before because I am usually sitting in a chair with Stephen wrapped around me like a pretzel while they just shoot the stuff in. I was able to get up this time because he had to wait for about 30 minutes while the Zofran ran through. This was our first time in the “infusion room”. The tape is still the real trauma for him. Nurse Pat put in his chart to use a special kind of tape next time so maybe this will be better. We are so blessed to have so many caring and giving people around us! Please know that if you have done something for our family that we are truly grateful and if I did not send you a thank you note it was just an oversight. We really appreciate all that everyone has done! Well I better get started on this busy day that the Lord has made!

Wednesday, July 2, 2003 7:52 AM CDT

Oh WOW have we ever enjoyed staying home this week! We actually go the pool up (thanks Cade)and the kids have had a ball! Stephen's friend Nick came out and played yesterday. They had alot of fun. Bible school started this week at a local community church and the kids have enjoyed that. I noticed while Nick was here that Stephen cannot seem to hold up playing as long as he usually does. He gets tired easily and it frustrates him. June 30th was my 13th anniversary and Parker's (grandson) 3rd birthday! Happy birthday Parker! Make -A -Wish called to confirm Stephen's wish trip to Disney WOrld yesterday. We leave on October the 3rd! We are all excited! We go tomorrow for the "bad" chemo. YEAH two weeks off of the stuff!!! Every 9th week he will have the following 2 weeks off. We are looking forward to that! I added a link to the bottom of this page to a virtual quilt that some ladies on the internet designed for Stephen. It is really neat. Stephen and Savannah are supposed to be in the Fourth of July parade on Friday morning. I am hoping that Stephen will feel good and be able to do that. They will be with the Karate for Kids float. We went to my mother's house Sunday after church to celebrate her bithday. Stephen was happy because his Papa was in town. He would tickle Papa and Papa would laugh this goofy laugh. Stephen would laugh so hard! Every time! He would just double over and slap his leg! It was so funny! I love it when he laughs like that. Stephen is looking forward to going to his friend Blake's bithday party on Saturday. He and Blake get a bad case of the sillies when they are together (right Ms. Ballantine?) but they have so much fun! Not much more to talk about. I will update again in a couple of days.

Saturday, June 28, 2003 9:29 AM CDT

Stephen walked the survivors lap in the "Relay for Life" event that was sponsored by the American Cancer Institute last night. He made it all the way around with the survivors and then walked another lap with the team (well part of the way on Mr. Hales shoulders).He also performed with his karate class and broke THREE boards with his personal board holder Mr. Newsome.He went down the giant slid several times and made me very nervous! Chandler came out wednesday night and spent the night. I took a really cute picture of them in the bath tub but I have strict orders not to put it on the website!! They had alot of fun. Today is Dane's birthday! HAPPY BIRTHDAY DANE (my mother)!!! Our trip to Dallas this week went well. Stephen has a mosquito bite on his leg that is infected. The doctor put him on oral antibiotics and told me that he would have to come in over night for IV antibiotics if it did not clear up in 3 days. I told him that he had never had anything like that before and the doctor said "he has never been on chemo before!" Just one more thing I guess. We will go on Thursday of next week due to the 4th of July. He didnot get sick last night and that would be a good thing as his father fed him a CHILI DOG for supper! YUCK!! That is about all for now. I will update again in a few days. Please continue to post on the guest book. We enjoy reading them.

Tuesday, June 24, 2003 7:04 AM CDT

I changed the pictures on the album page so be sure to take a look. I did not get very many good pictures at the wedding. I am hoping that someone else did and I will post some of Stephen with the bride and groom. He had a wonderful time at the wedding. He woke up during the night friday throwing up so I was worried that he would not be able to go but he was better Saturday morning. This picture on the main page is of Stephen and his nephew Chandler. This is the first time that they have really had a chance to play since all of this has started. They were so happy to see each other! Chandler is 7 months younger than Stephen but he is taller. Stephen was frustrated because he wanted to play outside with Chandler but the heat kept getting him. Just one more change that I can see in him...I have never heard him say that it was too hot to play outside. They played playstation and dueled (like the knights) instead. We have enjoyed being able to stay at home this week. Savannah got contacts yesterday and thinks she is going to like them. I think she is too young..she doesnt...what do I know! Stephen will walk the Survivors Lap during the Relay for Life that will be at the football field at North Lamar Highschool on Friday the 27th at 6:00. Karate for Kids will also be performing. Stephen and Savannah will both be performing in the demo. I think Stephen is being sponsored by Taco Delight and Koyn. I hope I have that right! I will check and make corrections later. This is an event to raise money for a cure for cancer so everyone come out and support a worthy cause! We have chemo on friday so I hope he is feeling well. If not I will let his DADDY ( seems like a daddy job to me) pull him in his wagon around the track! His papa will be in town this weekend so he is looking forward to that! So many people are still giving to us! Please know that if you gave to us and I did not send a thank you card, that we are truly grateful! I seem to be so behind in doing that. I put a thank you in the Paris News but for the people that I actually have a name for, I have tried to send a thank you. Mrs. Russell (our former Librarian at Chisum Elementary) has been trying for years to teach me proper etiquette to no avail…sorry Mrs. Russell…I am still trying (smile). I noticed on the guestbook ( Stephen loves all of the post) that my cousin Shannon has found it necessary to actually PURCHASE the skull du-rag (by the way, I found out I have been spelling that wrong so DU is the proper way) that Stephen originally wanted to wear to the wedding. Thank you so much! I am sure that Shannon and Cory will certainly reap what they sow in light of the fact that they have TWO little boys!! HA HA!! Just kidding…Stephen will love it! I think he looks so cute bald but he has not decided to go without head covering yet. That is all I can think of to write so I will post more later.

Saturday, June 21, 2003 7:29 AM CDT

The kids loved our trip to Medievel Times. Our knight won so that made it better. We sat on the first row and Savannah was chosen by our knight as the "Queen of Love and Beauty". She got to take a banner off of his spear. We went to the wedding rehersal and Stephen was freaked out at first. I think it was a combonation of being so tired and then not knowing what to expect. He did well and is excited about the wedding today. He woke up during the night throwing up, something he has not done in a while with just the vinecristine. I hope he feels well today. Little cousin Bryce followed him around all evening during the rehersal and that made his day. He felt very big! He would even get an exasperated look on his face and "fix" what ever 3 year old Bryce altered. He was so proud. I am looking forward to a calm week. We will not go back to Dallas until Friday. Stephen's counts were good again this week. He still only gets vinecristine next week so I am hoping it will stay that way.

Wednesday, June 18, 2003 6:42 AM CDT

NO MORE RADIATION!!! This picture is of our wonderful radiation staff (minus Dr. Munioz) they are a great group! We will go back for chemo on friday as we will every week for a year. This week we will go over on thursday because....the Ronald McDonald House called and told us that they have free tickets for us to go to Midevil(sp) Times! Stephen is soooo excited! Stephen and Savannah were happy to get back to karate! I can tell that Stephen is used to the world revolving around HIM! I told his instructor (Mr. Hale) to treat him as usual...Stephen had something to say to everything that Mr. Hale said! A big no no! It is hard for people to look at his little bald head and red eye and think of him as a normal smart mouth 6 year old! He will get it eventually...I hope!! Savannah has an orthadontist appt. this morning at 8:00 or I would stay in my gown all day! Not much new around here. People are still being so wonderful to us. Our airconditioning unit went out this weekend and I called the repair man to fix it. I will not mention his name as I do not know if he would want to but he came out (on sunday) and fixed it so that it would work until he got the part in. He came back on Tuesday with the part and did not charge us!!! Now remember we live 18 miles from town so it is not like he just dropped by! It is a long way out here! He came out TWICE! I have no idea how much it would have cost but I know most repairmen do not come on sunday and to top it off Fathers Day! I will be recomending this guy to everyone that I meet! So many people have been so great to us! I am having trouble keeping up with thank you notes!

Friday, June 13, 2003 9:03 PM CDT

We are home again! I found out today that Stephen is NOT finished with radiation..He has two more treatments next week. Oh well...I think we will just drive it instead of staying over. We went to the Ft. Worth Zoo on Thursday and had a good time. We took Savannah's new friend Hayden with us. She is the big sister and bone marrow donator to Brooke that I have mentioned on previous post. Her mother and I bonded instantly! For those of you who know who I am talking about, she reminds me of Vicki Monkres (I spelled the name right, Vicki would be so proud!) She is a mess! We had a lot of fun together and relationships like that make this stuff bearable. The were able to go home today also. We bought the suit that Stephen will wear in the wedding next Saturday. He looks very handsome. We stopped at the Harley Shop in Allen on the way home to find a solid black do-rag to wear with it. He wanted one with sculls on it..."it is black mom!!" We ended up with a bandanna that has the whole Harley get up on it...eagle..born to ride...you know...I think we will go with one we already have that I thought was navy blue...I am sure that Cody and Desiree will be pleased...I hope to have more pictures soon..the one that I took of Stephen and Brooke did not turn out..I will have to get one later...she is so cute.Stephen had vinecristine today and he is doing well..he will not have dactinomycin for two more weeks. They are staying strictly with the protocol. It is going to take us a while to get back into the swing of things.We are looking forward to just staying home tomorrow and hanging out. Other than that...all is well on the homefront...

Monday, June 9, 2003 10:30 PM CDT

Back at the RMH today. Radiation is really causing Stephens eye to be red and swollen. Stephen was happy that his friend Martin was here when we came but Martin was really sick from chemo so they did not get to play. THe little boy with the brain injury that was run over by a truck on the same day that Stephen was diagnosed with cancer has really been on my mind. His name is Brandon Panemeno. They are from Tyler. His mother seems at the point of breaking. He did open his mouth today with some coaxing from her. THat is a good sign. Stephen gave Bradon's sister a package of Yo-gi-oh cards today to give to Brandon when he wakes up. We are going to pray and believe God for him. We are going to meet my aunt (Sissy) for lunch tomorrow after radiation so I am excited about that. Not much new today. We are still excited about this being our last week!!

Saturday, June 7, 2003 9:37 PM CDT

We are home again. I cooked squash, fried green tomatoes and Steve cooked ham and fresh greenbeans. It was so good! One more week! Then it will only be one day a week! YIPEEE!!! We are so ready! Our neighbor Paul David Blackshear has had a nannie goat for a while (sweetbaby) and she had a baby billy goat (name is Billy) so of course we had to take some pictures. No..we do not know what Tippy (our dog) is doing to the goat! Stephen is doing great. The doctor told us on Friday that he had his fingers crossed all this week hoping that Stephen would do well on the Chemo. He did …no more problems with his stomach! We are so glad! Savannah enjoyed the “A Day for Me” program at Childrens to day. We left at 1 and came home. Stephen was thrilled today at the RM House as a Biker group came and cooked lunch for us. All of the Do-rags and long hair and tatoo’s! He was in hog heaven (no pun intended)! They cooked out hamburgers and hotdogs. It was really good! Not much else going on here right now. Thank goodness!

Thursday, June 5, 2003 5:02 PM CDT

Ok….just so you know…the Dallas Zoo is absolutely no fun when it is pouring rain! We really thought that it would stop and then the house supervisor gave us a free pass so we decided to try. I have some really fun pictures of the zoo trip that I will post tomorrow! Maybe next week we can try it again. We came back to the House and Stephen and I took a short nap(well I took a short nap and then Stephen did too after he woke me up twice!) and just hung around and played in the playroom. Steve went back tonight because Tippy (the dog) had to have medicine. Met a lady today that has a little boy the same age as Stephen that is In the hospital here. He was hit by a truck while riding his bicycle on April the 16th (the same day that Stephen was diagnosed with cancer) and is still in a coma like state. He has had little or no change. I wrote the little boys name down but do not have it with me. It is a long name and I do not want to risk butchering it so I will wait until I have it to write it here. Please remember he and his family in prayer. He also has a 13 year old sister. Mom and dad look exhausted. I have noticed that most of the parents here do not even know each others names. We are all known by our children’s names (Stephen’s mom etc.…) not our own. We have to be at Childrens tomorrow at 7:30 in the morning for chemo. Radiation at 11:45 as usual. Stephen has some “fuzz” on his head. I think it is because he has not had dactinomycin for so long and then missing a week of vinecristine and then the half dose. It looks neat. It will probably fall out though. We plan to be home Saturday night after the sibling program that Savannah will attend on Sat. morning. I have got to get home because staying here I seem to need a bigger skirt size! We have three meals a day cooked and served so of course in order not to appear rude….well anyway, Stephen loves all of your post on the guest book. I will write more later.

Wednesday, June 4, 2003 7:39 PM CDT

Great day!! After radiation we went to the aquarium in Fair Park. The kids loved it and it passed the time. I am sitting in the playroom at the Ronald McDonald house while Stephen and Savannah play. I just hooked this little laptop up to the phone line and went to work! We have met so many people while we have been here. One little girl in particular...her name is Brooke. She had a stem cell transplant a couple of months ago. She is 3 years old and a cutie. She has a website too, it is www.hieberttwins.com. She has a twin brother that has the same disease that she does. Please keep her in your prayers. So many kids with so many problems..we are really lucky that Stephen is doing so well and has such a great prognosis. Stephen is still on a high due to his “concert” on Sunday. He is starting to get pretty red around the eye due to the radiation but other than that he seems to be doing well. I am ready to go home. I need to sleep in my own bed! The older boys here really take Stephen under their wing. It is sweet. He still enjoys his do-rags and hats. I am going to try to take them to the zoo one day. It has been so hot that I don’t know if Stephen can take it or not ( don’t know if I can take it or not either) but we are going to try. Well, not much going on today so I will try to post later. I will try to put new pics up this weekend when we are home.

Monday, June 2, 2003 4:12 PM CDT

Oh Wow!!! The benefit was awesome! I cannot believe the response that we had! Paris you are great! Stephen was thrilled with all of the groups that sang. The Blossom Church of God did a comedy skit that was great! Stephen could not get over the lady with toilet paper hanging out of her skirt! He laughed and laughed. So many people worked so hard on it and it really paid off. It was perfect! All of the groups were great, Bear Haley, Cass Haley and Woodbelly, Wade White and his band (the whole band was there) Wendy Cold and Rain, Joseph Justiss and Mr. Dyre and The Blues Buddies (Tyler Bryant and Roosevelt Tweety) and Karate for kids. These groups did an outstanding job. Stephen’s friend Nick Tisdel sat beside us while Wade White sang. This was a show within its self! Nick sang his heart out right along with Wade!! It was so cute! Wades girls Ashley and Amber (Ashley is in Stephen’s kindergarten class) sang a song too. The MC Danny Midey did an outstanding job also. The Dinosaurs baseball coach Tim Brasher presented Stephen with his medal, trophy, last game ball,a ball signed by the entire team and a new ball to play with as Stephen did not make it to the last several games. This was so sweet and made everyone cry. So many people were there and I know that I did not get around to talking to everyone and for that I am truly sorry. Wendy McNeal and all the people that helped her did an outstanding job. When Cass Haley and his band got up to sing I said “Wow Stephen, Cass is really good huh” Stephen, loyal to his friend Bear said “He is almost as good as Bear!” I died laughing. We are at the Ronald McDonald house this week. It is going to be a long week. Some little girls from Chisum, Shelby Barnett, Erin Justiss, CJ Satterwhite and Jade Bolton (and I think Shelbys little brother Jacob) had a Koolade stand last week and raised almost 28 dollars for Stephen. I thought that was so sweet. Then last night a little girl from our church, Ryanna English ( when stephen was 4 and figured out that he would not marry his sister Savannah when he grew up…that is a whole other story…he dicided he would marry Ryanna…she is not his girlfriend mind you..he is just going to marry her) brought him a gift bag with all of her money that she had been saving…almost 50 dollars and gave all of it to him! I think parents must be teaching their children about the joy of giving! Stephen would have liked to hug her but some of his buds were watching so he just shook her hand! HAHA! She is so sweet! Several people also gave some special things to Savannah. That means a lot to her. Again, I know that I did not properly thank everyone. We hope someday to be able to do something equally as nice for someone else. Paris, God Bless You!!

Sunday, June 1, 2003 6:20 AM CDT

Sunday morning and all is well. When we are only home for one night I tend to go around in circles and not really get anything done. Oh well…it will still be here when I get home. Stephen had another good night. Something I feel like I need to clear up…the article that was in the paper stated that we had taken Stephen to a couple of area doctors and were given an incorrect diagnoses…true…but in the case of our wonderful Dr. Stephen Burns it was not like that. He told us that he was not sure what it was and sent us to find out what it could be. He is always so wonderful about that. Some doctors will just act like they know all. Not so with Dr. Burns. If he does not know, he doesn’t pretend to know; he simply finds the best place to go find out! In this case he DID make an appt. for us with Paris Eye Physicians. We (mistake) chose to go to Dallas instead. In the long run it did not matter because we ran into Dr. Graves anyway. Just wanted to clear that up. Steve and I chose to use Dr. Burns as our family doctor years ago due to his wonderful bedside manner and personable care. I would never want it to seem that we were unhappy with his care. Now on to Bear Haley. He will be singing at the benefit today. Stephen met Bear at a local gas station several months ago. Bear and my husband went to school together and spoke to each other in the station. Stephen had on his karate uniform and I think Bear played with him some. For some reason, Stephen was really impressed with him and talked about him often. Around Easter, when this entire eye thing started, our church started a Sunday school drive. In children’s church Sis. Joann Bolton told him that yes, he could invite adults. Well, he came down the stairs and said “ mama I am going to invite Bear Haley!” I did not know this man and told him that he might have his own church because I did not want Stephen to get his feelings hurt. He insisted. I conceded. We called and at first I talked to his wife Virginia. She told us that it was a great idea and to call Bear back that night. We did and Stephen invited him to come the Sunday before Easter to a singing that our church was having. He and his daughter Jamie came and Stephen was thrilled! His eye was huge and you could tell he did not feel good but he came into “big church” and sat beside Bear so proud! After that Bear has been a part of our lives. He calls regularly to check on Stephen and now will be a part of the benefit that is in honor of him. God works in mysterious ways!

Saturday, May 31, 2003 4:57 PM CDT

Home again!!! Stephen is so excited about being in the paper! He is really looking forward to the benefit or his "concert" as he calls it. The paris news is supposed to print a correction in Sundays paper regarding listing me as the organizer of the benefit. Sort of like throwing yourself a bridal shower doncha think? I put some new pictures on the website. Finally got the radiation mask pic to load. Stephen would not let me replace the pic of he and nick. He wants that one to stay awhile. Stephen is having another great day. He is trying to figure out which do-rag to where tomorrow. He is also (much to my dismay) planning to wear his spike necklace and braclets that HIS friend (not mine) Lisa Justiss bought for him. Just think of the looks that my little pentecostal boy gets when he goes out in public with is little bald head and spike jewlery! He loves it! He has become a biker dude! Hope we get to meet alot of you tomorrow. Stephen will be in the Karate Demo that will perform, I think around 5 or so. Looking forward to another great day. I talked to Stephens baseball coach (or actually the coaches wife) today and they plan to bring his baseball pictures and trophy to the benefit as Stephen did not make it to the last few games. The team sent him a really nice (HUGE) card and we still have it up. Stephen loves all of the post on the website.

Friday, May 30, 2003 1:47 PM CDT

Hey everyone! Be sure to check out Stephen's story in the Paris NEws today. For those of you that do not get the paper you can view it minus the picture at www.theparisnews.com. Stephen recieved the full dose of chemo today so I hope that he is well for the benefit. I thougth that they were going to gradually in crease the dose but the Doctor said that we needed to get back on track. He was so happy that they did not have to use tape today! How funny that he worries about little stuff like that! Because they only had to access his port, give the chemo and take blood, then take the access right out, they did not have to secure it with tape. The tape seems to give stephen the most trouble. It hurts to take it off! He also got a Hulk puzzle out of the prize box after chemo. Life is good! The only thing about the article in the paper is that it listed ME as the organizer!!! EEEKKK! That would be Wendy McNeal. Sure would hate to take credit for all of that hard work! I will let everyone know how Stephen does tonight.

Thursday, May 29, 2003 5:02 PM CDT

The picture of Stephen with his mask did not show up on the website, but I will have to wait until I am at my home computer to fix it. Stephen graduated from kindergarten today. He was so proud! HE wore his suit and looked very handsome. He not only has Hulk Hands now but also (thanks to Lori Kelley) Hulk Muscles too! It came with a Hulk mask and he is at this moment running around the Ronald McDonald House like that! We went to radiation today with no problems. HE has chemo in the morning so everyone pray that he has an easy time with it like he did this week. They will up his dose this time. I guess you all know about the benefit that will be on Sunday June the first at 2:00 pm at the Chisum Highschool auditorium. Ice-cream sundae’s will be served and a variety show will follow. Performers will be Wade White and Lanny Teague, Wendy Cold and Rain (with Wendy McNeal), Tyler Bryant (I hope I spelled that right), Bear Haley and Yaz, Cass Haley and Woodbelley, Joseph Justiss and Mr, Dyre, Karate for Kids and also a comedy act. It should be great fun and Stephen is so excited! It should be in the paper this week and I heard Ms. Mcquistion (Julie Mac) on Koyn talking about it. Wendy McNeal, Dot Lipscomb and several others have worked very hard putting it all together. I will write more tomorrow and post pictures of the graduation.

Thursday, May 29, 2003 6:13 AM CDT

Stephen will graduate kindergarten today! He is really excited! He has insisted on wearing a suit. We were able to get back in Paris yesterday in time for the end of the talent show at Chisum. He was so disappointed when he discovered that he missed his friend Blake doing an Elvis impersonation. He was very happy when Blake was allowed to do it again while the judges were out. I hope to have pictures to put on the site of that. I added a pic of stephen with his radiation mask this morning. Usually the mask do not have a hole in them but due to the NG tube that he had a week ago they had to cut a hole in it. It is not as scary as it looks and Stephen just hops up on the table and lays there. I will write more later today when we get to Dallas. We changed his appt for later in the afternoon so that he could graduate.

Tuesday, May 27, 2003 5:36 AM CDT

Heading back to Dallas today. Stephen had another great day. He lasted all day at the Kindergarten beach party. He was so tired when he got home. He is saving his allowance and "medicine quarters" to buy a pair of "Hulk Hands" and he has just about got it saved. He wondered if he could take extra medicine to earn more quarters!! It was nice to stay home for a few days. I even cooked supper! Stephen is really missing karate. I hope that when we come back on Wed. afternoon to be here for his graduation on Thurs. that he can go to Karate. He was so happy to play with his friends yesterday. Thank you everyone for the post on his guest book.

Sunday, May 25, 2003 7:33 AM CDT

We are going to church this morning. I feel like we have not been in a month! Stephen had another great day yesterday. We went to Aunt Sue's house and visited with the family. He still only shows select people his head. Kindergarten is having a "beach party" on monday and because he will not have radiation that day he will get to go. He is so excited. Aunt Cathy gave us a betty crocker cook book called "Cooking for cancer." It looks great and now I just want to be able to stay home and COOK! Stephen has really not had any side effects from the vinecristine this time. I guesss because they cut it in half. A few stomach cramps and leg cramps on Fri night but that is all thank God. He ate really good yesterday. I have noticed that he prefers spicy things. I am told that radiation causes foods to taste bland so that may be the reason. Not much exciting going on right now. We are just acting like a NORMAL family for these few days. My great-grandmother (94 years old) Emma Elizabeth Horton, passed away thursday. Savannah has her middle name. She was a great lady and adored my father. When he died in November, she was heart broken. I think she was determined to go with him. I have nothing but wonderful memories of "Nannie Hart." The funeral was yesterday and was typical of a small community funeral. It was beautiful. I did not take Stephen to the funeral because he was so tired. She was buried close to my father. I need to go get ready for church so Iwill write more later.

Thursday, May 22, 2003 8:08 PM CDT

We are at the Ronald McDonald House in Dallas right now. Stephen had radiation today and we go for chemo at 7:30 in the morning. He has radiation again at 11:45 at Medical City and then we get to go home for the weekend. He is having a great day. He went to school for about an hour and a half this morning and practiced on his graduation. He loved it! Lisa Justiss (catwoman) brought him several do-rags and his favorite was the one with flames. He also got a pair of Harley Davidson pajamas from the owners of the Harley store in Paris. He says he will wear those tonight! He enjoys himself here at the RMH. Lots of the kids are hairless! He has not come up with the nerve to go without head covering yet but I think he will. They are cutting his vinecristine in half tomorrow so I hope that he will not be as sick. Everyone at school was so nice to us. I miss them all so much. Stephen showed Mike (radiation guy) his bald head today. That is the first person that he has asked if they wanted to see his head. I guess he knew that he was going to have to take off the do-rag to fit his mask on so he just made it his idea! He did not eat much tonight but maybe he will eat later.

Wednesday, May 21, 2003 10:10 PM CDT

Finally!!! Home!!! Not for long but at least for one night! We took Stephen back to the hospital on Mothers day with severe stomach cramps and dehydration. It was discovered that the 5 gallons of liquid that I was told HAD to work indeed did not! He had an obstruction in his small bowel. He was in so much pain and they gave him all kinds of pain meds but all that really worked was benedryl and it just put him to sleep and out of his misery! He cried constantly and said, “Pray mama pray.” He was taking huge amounts of mineral oil and they had him on a nutrition program called TNP. It is like a regular IV except it has fats and lipids in it. It looked like a milk shake. He lost 11 pounds and all of his hair. We were both shocked when it started falling out but then we were all right with it. He had a few patches of fuzz left and he said that he looked like a baby. When we got into town today we went strait to Homer (the barber) who shaved off the offending fuzz (no charge) and Stephen was happy! I posted a new pic of him with his slick head on the website. I skipped a part didn’t I? He started getting better day before yesterday. He smiled on Sunday and I was thrilled! They did not give him chemo on fri because they did not think that he could handle it. We go back tomorrow for his 4th radiation treatment and then we will go on fri for his chemo which they are going to cut in half and then slowly increase to see how he tolerates it. I have never been so happy to come home in all of my life! We are going to go to the school in the morning before we head to Dallas so that Stephen can practice with the class for his graduation. He will graduate on the 29th. Savannah got her braces on Monday. Dane had to take her. She chose pink! They look cute! I will take a picture in the morning and try to post it later. Poor Stephen still has to take mineral oil and some other stuff to keep things “moving” so we hope this never happens again. My friend Sister (that is her nick name) brought a beautiful corsage to me to wear for mother’s day and it is still in the refrigerator! I guess that I could have worn it to the hospital! I will try to write more in the morning. We will stay at the Ronald McDonald house tomorrow night and I will have access to a computer so I will try to update. Thank you everyone for your prayers and positive thoughts.

Tuesday, May 20, 2003 7:29 PM CDT

Still in the hospital. Hope to go home tomorrow. Stephen is doing MUCH better. He is no longer in pain and he is getting the tube out of his nose tomorrow morning. Third radiation today. He is handling it well. I will update tomorrow night when I am home. Thanks for all the prayers and well wishes.

Wednesday, May 14, 2003 4:52 PM CDT

Quick update. Stephen is in Childrens right now. He is in room 473. We came in Sunday night with severe stomach pains and dehydration. Social work is letting me use the computer. He is doing some better but still in a lot of pain. They think it is from the Vincristine but not sure. MOre information later. Hope to go home in the next couple of days.

Saturday, May 10, 2003 6:13 PM CDT

Finally time to write. Rough day. Stephen is still having severe stomach cramps and I am sure it is a combo of the chemo and from the treatment that he received over the past two days. Everything hurts. We have had an almost 2 hour reprieve that seems to be ending. It tears me up for him to cry all the time. Play station gets his mind off of it more than anything. Savannah and Steve just got back from the Karate Demo at the Art Fair. Savannah was so proud! She had a special part in the self-defense area and I will watch it on video, as Stephen could not go. I have to hand feed Stephen to get him to eat or drink but he did drink a pedisure shake with strawberries and ate some applesauce. I am keeping a bottle of water and following him around with it. If anybody has an idea of how to get more fiber down him please let me know. He has lost seven pounds so I guess I need to be concerned about calories too. During his good time today I jumped up and down several times (this looked very cute in my gown that I had on all day) and yelled PRAISE GOD!!!! YOU FEEL BETTER!!! He liked that and laughed! I love it when he laughs. He hugs me often, more than he used to. I hope that he can go to school next week. Savannah came home with gifts from the art fair. Dane and Papa bought Stephen a Yu-gi-oh framed picture and Savannah a laser pen. Aunt Doris Sue was there and bought each of them a beanie baby. Stephen was happy.

Friday, May 9, 2003 10:15 PM CDT

Just got in from the hospital. We went in on Wed. night and got home today (fri. the 9th) ane we are exhausted. Stephen is doing better.He had an illius (sp) a side effect of the vincristine. It is where the bowel slows or shuts down. He had a major constipation thing going on in his small intestine. Much to my horror and his he had to have an NG tube put down his nose and two huge jugs of liquid poured down it over a two day period. He is still having stomach cramps and they took the tube out this morning. Poor baby. Got another chemo treatment today and went by ambulance over to medical city for his "mask making" which he hated (the mask making not the ambulance ride,he loved that)and fought. I will write more tomorrow. I stayed up in a chair and did not shut my eyes for 16 hours and of course did not get to make it up last night either. If you can imagine a 6 year old with an NG tube.....So I will finish this tomorrow.

Wednesday, May 7, 2003 11:28 AM CDT

May 7, 2003

Ok..back to the story. Stephen was given a good report on his bone marrow test and his bone scan (which, by the way, he informed the radiologist that she needed to brush her teeth!). The cancer had stayed within the eye socket. His kindergarten teacher (Ms. Ballantine) and some of my other friends Lori, Lisa and Tessie came to see him on Tues. evening. It looked like Christmas! They brought so many gifts from the people at Chisum. We went home on the 25th and had to be back on Monday the 28th for another surgery. Dr. wanted to go back into the left eye and see if the margins could be cleaned up as there were still cancer cells that would require radiation treatments. If they could find something that they could actually see then they could possibly remove it and avoid radiation. It was not to be. The Dr. could not see it so Stephen will have to have the radiation. Stephen had his first chemo treatment on Mon. the 28th. He was given Vincristine and Dactinomycin and true to its reputation, the Dactinomycin caused nausea and vomiting for most of the night and into Tues. He was discharged that evening and he was fine until the night. He was sick most of the night but then wanted to go to school on Wed. He did really well. Our main problem is taking oral meds. He HATES to take anything by mouth. We have instituted the “quarter jar.” When he takes his medicine without a fit he gets a quarter in the jar, which is doubled by Dane (my mother) so that helps a little. Back to Dallas again on Sat. the 3rd of May. He received his second chemo and handled it like a trooper. His friend Martin ( rhabdomyosarcoma under his kidneys, 8 years old) had told him that the needle that they would stick in his port to access it for the chemo would not hurt because they would use Emla cream on it which numbs the skin. He held my neck and cried a little but then he saw that he did not feel it! We were thrilled! We left the hospital and went to Target so that he could spend his money on a game for his Gameboy Advance. He only got Vincristine this time so the side effects were not nausea and vomiting but jaw and leg pain along with stomach cramps. Stomach cramps could be from the sulpha drug that he has to take 3 days a week. We went back to Dallas on Monday the 5th this time to Medical City to see Dr. Munoz for a radiation consult. He eased our minds somewhat about the radiation. He said that where he will have to put it would not affect his appearance too much. It would be worse if it had to be on his cheekbone instead of his upper brow bone. Nights have been a little rough due to frequent leg pain but we pray and take Tylenol. He tried to go to school on Tues. but only made it a couple of hours due to stomach cramps. Today was the same. Did not go to school. I decided not to give him the Bactrum until I talked to his nurse (Pat). We go back to Dallas on Fri. for more chemo and to get his radiation mask made. Simulation they call it. People have been so wonderful during this whole time. Gifts, money, food. Thank you all so much. Savannah is doing well also but I think she is getting weary of it all. More later…

Wednesday, May 7, 2003 4:38 AM CDT

May 6, 2003

On or about April 3, 2003 Stephen woke up with a slightly swollen left eye. It looked simular to a sty or even as though he had been hit. It was not red nor did it cause him pain. On the 5th of April, following a baseball game, I took him to the minor emergency clinic only to be told by the attending Doctor that he had an allergy and to give him benedryl and claritin. By Tuesday the 8th his eye was really swollen and he was seeing double. Steve took him to Dr. Burns. Dr. Burns was not sure what it was but suspected that it was an infection in the gland. He gave him an antibiotic and told Steve to call if it did not go down or if it continued to grow by Thurs. evening. On Thurs. morning it was huge. Dr. Burns made an appt. for us at the Paris Eye Physicians clinic for Fri. morning. I decided that I wanted to go to childrens in Dallas instead so Steve and I took him on Thurs. afternoon. We arrived after opthamalogy had already closed so we saw a Dr. in the E.R. who told us that it was a chalazium (sp) an infection in the gland above the eye and gave us an antibiotic to put in his eye and sent us home. On Fri. his eye was much worse. He wanted to go to the Karate demo practice anyway. I am so glad that we did. That is where we met Dr. Steven Graves. He is a opthamalagist here in Paris. He looked at Stephens eye and said that if it still looked like that on Monday to come see him. It was twice as big on Monday so we went. He sent us for a CT that evening and by Wed. Stephen was having a 2cm monster removed from his eye. On Thurs. evening the 17th of April, Dr. Graves called and asked me to bring Stephen in Fri. morning. I think that I knew something was wrong as he could have given me the results over the phone. On Fri. morning the 18th our lives would change forever. Dr. Graves came into the office and looked Stephen over and felt his neck. He then told me that the news was not good. He had cancer and it was called Rhabdomyosarcoma. I chew on that word in my sleep. It even sounds hateful. He was so kind to me as I slowly went into shock. He made all of the appropriate phone calls to Childrens Medical Center and even gathered up all of his scans and lab reports. He gave me his cell phone number and also his home phone with instructions to call him if I thought of any questions. He even called the Karate school to ask them to hold a special belt testing for Stephen that night as Stephen would be on Chemo. during the testing that would be held on the 2nd of May. Those wonderful people put together a testing that was above and beyond the call of duty. Stephen tested for his Camo belt (the 4th level ) in style! Each belt has a meaning and you have to be able to recite the meaning of your belt to test for the following belt. When Mr. Hale gave him his camo belt, he told Stephen the meaning. It means " The sapling was hidden among the taller pines and must now fight its way upwards." Talk about perfect! A Marine in full uniform was on the testing panel and gave Stephen a hat that he called a "Warriors" hat. He told Stephen that it had brought one Warrior home safe and it wuld bring him home safe also. Stephen even got to break a board! It was great. We stayed pretty much in a state of shock until Monday when we went to Childrens to the Oncology clinic. We met several doctors and had x-rays and blood work. We were not admitted as the hospital was full. We stayed at a hotel until Wed. and he was admitted to have surgery to place his port-a-cath, bone marrow test and spinal tap. He had a reaction to the pain and nausea meds. that night and he hallucinated all night long. It was awful. I will finish this story later. It is mentally exhausting to write about this.

Sunday, May 4, 2003 7:41 PM CDT

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

Click here to go back to the main page.

----End of History----