Tuesday, April 13, 2004 9:17 AM CDT

Hope everyone had a wonderful Easter. I know we all did. On Friday me and my mother went shopping for Danielle and my niece Lexie for their easter dresses. Found some really cute ones but had to decide on only one. Then their aunt Sandy came and got them to have their hair cut, go to a skating birthday party and then to a swimming party. By the time the day was over, both the girls were so tried. I also decided to check out some clothes for me at the store, but just could not decide on anything except a pair of shorts that was a size bigger than I would normally wear and a shirt. It really sucks to have this much fluid on you and you go to a store to try on clothes. Not a good combo!!!!!!!!But anyway the shorts fit great and so does the shirt. On Saturday I went with a neighbor of mine to our little town of Tomball and then we took the girls to her church for an easter egg hunt with the other children. I am so glad that they got to do that because by late that afternoon the sky opened up and let loose. They had so much fun though. Sunday me and my mom spent most of the morning getting ready for Sunday lunch/dinner. Went to the cemetary to visit Dustin and to release his balloons like we had promised that we would do at each special event or holiday. The flowers that we had gotten for his grave was so beautiful,full of red,yellow,blue,purple,pink,and big organge/yellow sunflowers. It was still raining though on Sunday so the girls had to hunt for their easter eggs from us in the house. We hid them everywhere. From inside socks that we were wearing, to on top of people heads. Just to make it exciting. That day, there was not a moment that did not go by that Dustin was not remembered. We all miss him so much and wish that he was still here with us to celebrate. But he is celebrating with his Jesus.

As for myself, I feel better each day. I had to go up on my lasix for three day just to get all the fluid off my legs. At least know I can be on the floor and get back up with little help. Sounds funny uh!! I can actually see my knees and ankles again, I though I would never be this happy about my legs. I am getting some of the side effects of the prednisone, like the awful stomach pains(gas/acid),bloating in my stomach and just this morning I can now store nuts in my cheeks. What fun!!!!!!! But I do feel much better. I was told that after taking the steriods that I would feel like I could do anything. Well for the last day or two I have been cooking more and I have actually been doing my laundry. For those of you who know me, I REALLY HATE LAUNDRY. My mother does it for me most of the time.

I also want ya'll to know that Danielle's teacher she had last year for first grade made TEACHER OF THE YEAR at her school!!!!!!!!!!Way to go Denise Hermes. This teacher has gone above her duty as a teacher ever since Dustin was diagnosed and is still here for us know. We all love her dearly and wish her the very best for MISD Teacher Of The Year!!!! I had to write a letter to the school board on why I think she would be a great teacher for MISD and I told them of how she had helped our whole family during and after Dustin's treatment and how she still helps us and cares about us. We love you Mrs. Hermes.

Please continue to pray for Sasha Dvorak and her family. Sasha earned her wings Easter Sunday at 10am. I truely feel for this family. Even though I did not get to know them much during our children's treatments I do know what they are going through. Sasha will truely be missed. She is a special angel know. Please visit her site and sign her questbook. Thank you. Lets all have a moment of silence after you read this.

Please pray also for Katia and Tracy.Katia's page They have been in the hospital for some time know. About the end of August will be one year. I know things have to be getting old for the both of them and they need to be home know. So lets pray that Katia will get well soon and will get to go home.

Lets pray for Madison Brown, she is still in remission and I know her mom Karen alway has that terrible word (relapse) in the back of her mind. Pray that they continue to be strong and that they understand the loss of Karen's bother-n-law just a few weeks ago. Give Karen the strength she needs God.

And for all the other children out there fight for there lives. Give then the strength they need to get through the day and to prepare for tomorrow.

Love,
Stacie

Wednesday, April 7, 2004 9:59 PM CDT

Sorry that it has been sometime since my last update. I have been having a little bit of a problem with our computers here and some power outages.

I went to the doctor on Monday as scheduled. Both me and Dan went. Of course me. Was weighed and I was at 125.20 pounds. That doesn't sound like much to most people but for me that is alot. My normal weight is 100-103 pounds. I am a very small boned individual. Blood pressure in the normal range. Did not have to pee in a cup for a change. We were then sent to a room and that was when Dr. Walls came in and started to explain my diagnosis. He started by tell us about two professional sports players that have the same thing that I have and how since there is so few people with this that there has been no clinical trials or anytype of medicine or even a really a name for it. How about that one!!!!

Dr. Walls did tell us that my kidneys have a scare on them and that is the cause for my kidneys not being able to filter the potein correctly.What cause it-unknown. Your normal protein output in your urine is about 150. Moderate would be 2000 (Dr. would be concerned),that is high. Well my is over 11,000 and that is considered very severe. We were told that could be kidney failure on some other types of diseases. My kidney size is enlarged just a little bit, but nothing to be concerned about right now. My protein and something else that goes with it is extremely low. The good new is that with the CBC my kidney function is normal. No problem with that.

Because of my age and my health, we all decided to try sometype of treatment. If I was about 60 to 70 years old then we would not do anything about it, well that is not the case for me. I am only 32 and still have many many years to go. This is was Dr. Walls has susgested-I am on Prednisone (steriod-the same one that Dustin was taking before he passed away so I am not to keen on it because I know what it does to the body)45 mg a day for two months and then start to taper off and that should take anywhere from six to nine months to do. I will have to do another 24 hour urine collection in a few weeks to see how the steriods are doing. If no change then we will go to other medication--(cyclophosppamide,chlorambucil,or cyclosporine) all are immunosurpresents.The side effects of Prednisone is as follow--Increased blood pressure,hunger,changes in body appearance(the face,neck and trunk become heavier-swollen to be precise)salt and fluid retention,decreased response to infection(more prone to getting sick easier)mood swings,stomach problems,acne,menstrual changes,thinning of hair(for some that know me,I do not need this side effect),thinning of bones,and finally I think sleepness(not being sleepy).

How it this suppost to help;no one knows for sure how prednisone helps the kidneys, but many times it can stop the leak of protein. We are hoping that this works and can put this into remission (this is not cancer).With some kidney diseases they can go into remission and this is what we are looking for. How do we know it that occurs? When I no longer spill protein in my urine. Hopefully I will not have to remain on the steriod to achieve remission. Other medication that I am on is lasix (water pill), I was on 20 mg then went to 40 and now I am at 80 mg a day. I this does not work for me then we will go up. I have to monitor my weight to see if it is working. So far my weight is the same but I will give it a week or so. I am also on a blood pressure medication call Altace. I was on 5 mg and now on 10 mg a day since the steriod raises my blood pressure.

Everyone goals for me to keep my kidneys about the same as far a damage. Not let it get any worse than what it is now. So I have to force myself to keep with my restricted fluid intake of nomore than 50 oz. and a low fat,low sodium diet. If for any reason they start to get worse then that is when we look into dialysis and even a possible transplant, but we are keeping our faith, hope and trust in God that this does not happen. This is something that will not go away and I will alway have it now. We also did discuss the baby issue. We will not be able to have anymore children, because of the possiblity of harming the baby itself and then also the health of myself and possible total kidney failure. I know that we are both just crushed with this news but we know my health is the most important thing right know. There is alway adoption we can look into.

I have decided to quit my teaching job. I wasing work that many hours a week anyway until I am able to come back without the possiblity of getting an infection. So my Mary Kay business will be my full time perminent job. Even though I was not working that many hours a week it still helped out. With a new year there is new deductables and other medical stuff that we have to meet again and unfortunately this years deductable and co-pays have gone up alot from last year so all this medical stuff has really his us hard in the pocket book. So now I really have to try and get the word out about my Mary Kay and try to help Dan bring some income in. I have alway done it on a semi part time basis so now it will have to a full time job and look for recruits for sale,team members,interview for future directors and so on. As I am typing this I am just puzzled at how I am going to do this and help Dan. I can not just leave it to him, he has enough to worry about than to worry about money issues. So if any of you know of some one that wears Mary Kay or would like to try it please send my an email. I am dicussing with my director on a promotion to launch my career again and a sale incentive for new business(huge percentage off).



Well on to other stuff besides myself. There is a little girl that we met back in July that has AML and is in ICU and is needing your prayers. Her parents are waiting for sometype of good news from her doctors on whether is will be able to have a transplant or not. For the past three weeks is has been on a ventilator. Please visite her website and look at her past journal history to see how she has been doing and sign her questbook.Sasha's webpage.

On to other news too. I am still needing donations for the Relay for Life. I have recieved to date $90.00. If you would like to donate please mail a check payable to The American Cancer Society to the Address above. All donations are tax deductable at the end of the year.

If I do not see or update by this weekend, please have a safe Good Friday and a wonderful easter. I know we will try since this will be our first easter without Dustin. Just today I went to order his grave blanket for easter made of fresh flowers and ate lunch with him. Talk with him and just sat in silence for awhile. I thought about last easter and how lucky we were to be home for it. Dustin had a ball and recieved the egg that had the five dollars in it. My mother every years puts dollar bills in some and in one she will put a large bill in it. The amount depends on what she has in her wallet. But Dustin really enjoyed himself. To bad that will not be the case this year. Dustin will be enjoying easter, but instead of with us here on earth,he will be in heaven. I hope he really has fun. I will be thinking about him more that day than anything. We miss him so much and sometimes the pain is so overwhelming that is hurt so much. I do seem to look more at the past memories and talk about how silly he was with things and how some of his facal expression were. He was well known for his silliness. That he got from my father-n-law. I guess that is why they got along so well. They loved to play with each other,loved to irretate each other too. I know it has really bother my father-n-lay alot since they were so close. We all love Dustin and truely miss him and would do anything to have him back, but God made his decission and that was Dustin to be with him now. That is hard to except but that is the way it has to be and we are not to question his doings. We will be reunited some day and when that day comes we will truely be rejoiced. Until now all we have are his pictures and his loving memories to keep us happy and laughing and keep us sane.

I just realised what time it is and I have to get up in the morning early to get Danielle to school so I am going to let everyone go and I am truely sorry for not updating sooner. I will work on that since I am at home now.

Lots of love,
Stacie and Dan

Tuesday, March 23, 2004 11:12 PM CST

Please forgive me for not updating like I would normally. It has just been difficult for me to even go to this site. Only because of the things that are going on with me. Going from one doctor to another, in and out of doctor offices, all the lab work, etc. It just brings bad so many memories. Memories that are hard for me, yet treasure to me. Just like last week when I had to go to the hospital to have my biospy done on my kidneys. I knew how Dustin was when he recieved his first bone marrow aspiration, before we knew he could have it done in PACU. I remember how sedated he was. He was so silly and so spaced out. I remember the doctors tell me and Dan that it wasn't going to hurt him that he would not remember any of it. Both me and Dan were in the room and then I finally had to leave because I just could not be there and to watch them put this needle that looked like a turkey injector into my son. I stay right outside the room and could here Dustin screaming and crying. That cry that was telling me that he was hurting, in pain. A cry that I had never heard from him before. And to know that I was going to have something similar done but only to my kidneys. I was so scared. All I wanted to do that day was cry. Cry because of what my son had gone through and I did not stop it. I did not stop the pain or the hurting.
I remember last year during his first treatment how he would not take off his shoes. From the very first day to the last day of that treatment he would not remove them for anything except when it was time to go to bed. I remember Dr. Blaney and Dr. Shardy coming into the room with me,Dan,my mom, and my sister and a dear friend and how they were explaing his first treatment chemo. What the side effect were going to be and all the other medications that Dustin was going to be on during that time was way to much. They told us how Dustin was going to loose his hair,how he was going to feel very tired and sick, how his blood counts were going to drop and the risk of infections. I also remember how Dustin did not like having his dressing changed on his centeral line. Both me and my mother in law were there for Dustin first change and we looked at the TPN nurse and asked how many times does it have to be done. Dustin scream bloody murder the whole type she changed it. And everytime he would see her or any of the other TPN nurses he would just tence up or tell them "I do it later". There was some good dressing changes were he would help, but not alot. I also remember when my sister came to see Dustin during that time and his hair started to fall out. You could just run your finger through his hair and a few pieces would come out. Hair would be all over the place,all over you, Dustin and his bed. I had left that day to go home for some reason, maybe to see Danielle and when I returned that same day Dustin had hardly no hair left. My sister just could not stand to see his hair coming out. That just broke hurt heart more than him having cancer. So she just took a comb and combed what she could to let all the loose hair come out. After a while that night I got used to it and finally to see pictures of Dustin with hair is hard to even imagine or remember.
But anyway, when I was at the hospital they had me remove my necklace, this necklace means the world to me. My niece had given it to me during Dustin's first treatment and it has stayed on my neck ever since. I it an angel with Dustin birthstone in the middle. I can remember when I got it, Dustin looked at it and I told him that it was his angel. So Dustin would always look at "his necklace" and say "MOMMY IS THAT MY HANGEL?" "THAT MINE" he was very proud of it. Dustin alway had to add an H in front of angel. I quess that is what made it so special to me. Anyway I had to tell them that it was my son and that I did not want to take it off. The biospy itself went well. The only thing that really hurt was the numbing medication that Dr. Walls used.
I still can not understand why it has to be this way. Why take a family that has so much love and then have to take a member of that family away.Maybe God reason for my sickness was to releave my grief. To ease my mind so that way I would not worry myself to death. I do not know and will never know. I am getting were I do not know about things anymore and do not question how our life has been and how it will be. God had said that the things that you have here on earth are not really yours. Your family is yours. So why do so many people worry about what they have or do not have. Just like the phrase "Keeping up with the Jones". We have decided that it we are ment to have a house of our very own then God will grant us that and any other things that we are to have. I do know that back in January we talked about possible having another child. I had told Dan that if God wants us to have another child them he will give us one. Well I have been told that I can not have anymore children. If I was to caring another child then I am put not only myself,but the that child at risk. That is a risk that we will not take. I would rather be here for me,Dan and Danielle that to risk my health because we wanted to have another baby and to have that baby with their mommy was something I do not want. Maybe we will adopt,that is also something we need to really thing about. I would not be our own is what I am scared to face.
It is getting late and I need to get to bed. Please pray that our family. Pray that my result are ok,pray for Danielle as she is having a hard time in school and has started therapy to get her through loosing her brother,pray for Dan has I know this has to be hard on him too he has just lost his son and now his wife is sick, and also pray that our loan that we are trying to get to buy some land next to my sister's house who we live with comes through for us. This area is really the only place Dustin called home and we would like to stay in that area. It is also close to the cemetary too.

Love,
Stacie

Thursday, March 18, 2004 8:09 PM CST

As I speak Stacie is in the hospital and had her kidney biopsy done today. She will go home tomorrow and will hear the out come next week some time. Stacie is feeling pretty well right now with all the pain medicine she is on. She will update as soon as she gets the results.

Sandy Little (Dan's mom)

Saturday, March 13, 2004 4:40 PM CST

Sorry for not updating sooner. I have not gotten any results back from the doctor. I did go Thursday and they only did more blood work and a bleed time test. I do have another appt. next Tuesday and hopefully I will know when I will have my biospy done.
I have been very tired and drained lately. I also been trying to keep my fluid intake low and try not to eat anything that has salt on it or in it.
Not much else is going on. Danielle was on spring break this past week and has had a ball playing outside. She did get her first sun burn for this year.
Please try to help me with the Relay for Life. Even if it is just $5.00, anything will help. It is better than nothing at all.
With lots of love to everyone. I will update more on my condition when I know more.

Love,
Stacie

Wednesday, March 3, 2004 5:51 PM CST

Sorry for the long wait. I have been in and out of the doctors office lately trying to find out what is wrong with my legs. They are retaining some fluid.

As I am typing this I am sitting in a hospital room. This is the last place that I really want to be.

Anyway, for the past 5 months I have been retain some fluid on my legs and ankles. After Dustin had past, I went into the doctor to have it checked. They did a CBC and the only thing wrong was that my protein was low. We thought maybe it was due to all the stress, long stays at the hospital with no exercise, and not eating very well. So in Jan. I went back in to have my CBC done again to check my levels. Still my protein was low but not as low as it was. So my doctor wanted me to con't. eating foods high in protein. Then about the first of Feb. I started getting a bladder infection. Went back to the doctor and they found blood but really no sign of an infection. There diagnosis for it (STRESS). Was told to come back in a couple of weeks to have it checked and to have my protein checked too. Mind you my legs were still swollen. On and off for a couple of weeks my bladder would act up. When I went to have it checked out again it stilled showed blood and my protein was still low, actually lower than before.

Then, I was sent to a uralogist this past Monday, he checked my urined and still showed blood, but also showed something else. Alot of protein. Which was not good. That was tell him that there was something wrong with my kidneys. By this time, my fluid on my legs had gotten worse. Almost to the point that it was hard to walk and hard to wear shoes. I also started having lowere back and abdominal pain.
Well last night around 7:00 I was really hurting and just could not walk, move or anything of that sort without it hurting. I aslo did not feel very well, real tired and felt like I had just jogged a mile. So hear I am, in the hospital.

My diagnosis: Some form of kidney disease.
What type: Do not know yet,need to have a kidney biospy done. Will be done in a couple of weeks, then it will take about a week to find out the results.

Treatment: right now on lacics(sp?)some type of blood pressure med that lowers you BP.(to help with the fluid)
Potassium(for some reason this is low)(yuck)
Antibiotics-for the some infection in my bladder.

We will not know the exstint of the damage if any on my kidney until the biospy comes back. This will also determine the treatment plan and what the future will hold for my kidneys(if any failure).

How is that to top the cake on the already stressful,emotional,pain,and all of the above life that I have.
I have always been told that God only gives you what you can handle. HEY GOD, enoughs enough now. Our bucket is already full. Just leave us alone for now. If I do not have a heart attack or a stroke by the time this is all over it will be a wonder.

Just pray that I can keep myself sane and not loose it completely.

Love,
Stacie

Tuesday, February 17, 2004 4:50 PM CST

Well yesterday God recieved another beautiful angel. A little girl named Payton Griffin. She had AML just like Dustin and was 4 years old. I met her mom Vanessa early in Dustin's treatment and Payton had been diagnosed in Nov. of 2002. She was getting ready to start some of her preBMT test at that time. Payton already had one transplant but had relapsed sometime I think during the summer. Her parents were waiting for an unrelated match but never found one. Vanessa was with me at the time when Dustin had passed so I was very greatful to be with Vanessa yesterday with Payton. Payton does not have a website but I would greatly appreciate it if you could write something in Dustin's guestbook and this weekend when I go to the funeral I will give Vanessa a copy of all the entries for her and her family. I know how much it has helped me and know it could help Vanessa and her husband to know that there are alot of people thinking and praying for them.
Please give this family some much needed prayers and help this family with what lies ahead this week as they prepare for their daughters funeral. Give then needed strength to get through the days, weeks and months ahead.
My heart is with you Vanessa.
With all my love,
Stacie







Sunday,February 15,2004

HAPPY ANIVERSARY DUSTIN!!!!!!!!!!!!!!!!

Today,well it has been exactly one year ago today that we got the offical news that Dustin had leukemia. I can not believe how time flies. I did good today no crying just alot of laughter. Our whole family went out to the grave site to visit with Dustin and to remember that day one year ago. We talked to about Dustin, laughed a little and then gave everyone a latex balloon to let go into the sky. My one sister Sandy had to go and get her lipstick out of her truck so that way she could give Dustin a big kiss so she kissed the balloon. Then we decided to write messages on the balloons with her lipstick and the we all let them go. It was such a beautiful day for it. We all decided that when it came to a holiday or a special day for him that we would let balloons off in his memory. Dustin really liked balloons too. Before we left the cemetary we could no longer see the balloons. We all decided that Dustin was quick to snatch them up and that he did not want to share them this time.

With all my love,
Stacie









Saturday,February 14,2004

HAPPY VALENTINE'S DAY DANIELLE AND DUSTIN!!!!!!!!!!!!!!!!!
Today was a very good day. No crying. But man my eyes were so swollen this morning from crying so much yesterday that I could not even open them very much. I went and picked up my niece and nephew after mine and Danielle doctor's apt. Then went to the grocery store and that was a big mistake. Never again will I go with three kids. We decided today instead of going out to eat like everyone does, I picked up some steak and potatoes and we got Dustin his roses and also my husband's parents came into town last night. We had a really good day.

Love,
Stacie














Friday,February 13,2004

Pardon my french but today really sucked for me. Dustin one year aniversary for his diagnosis is coming up this Sunday and today was all the Valentine's Parties at work today. It brought back so many happy and unhappy memories. Last year, that Friday was Valentine's day and all the classroom were having their parties including Dustin's class. I can remember how excited Dustin was that day. Then around 3:00 that afternoon was when we got the terrible news about his blood work. That there was something very wrong and that we needed to take Dustin first thing Sat. morning to see his regular doctor. That was the day that changed our lives forever.
So today just brought back to many memories. I could not stop crying so therefore I did not work, could not work. I just could not be around that. So I left with my daughter Danielle and we went to a birthday party for one of her friends at a place call Libby Lu. We both had alot of fun and it got my mind off of things. Also it gave me a chance to know some of the other moms that there daughter is in the same class as Danielle's.
I was ok for awhile then night came and the tears started back up. I just miss him so much today.
Hopefully tomorrow will be better. We are going to put flowers out tomorrow for Dustin for Valentine's Day and then on Sunday for his one year we are getting a bunch of balloons and then letting some of them go in memory of that day that changed our lives forever never to be the same.

Love,
Stacie

Wednesday, February 4, 2004 5:24 PM CST

Well I have started back to work. I was working as a Preschool teacher at the childcare center where Dustin used to go. I am only working about 3 hours a day, but it has helped out some as far as not being at home and just sitting around looking at all of Dustin's things everywhere. I miss him so much. There are days when I can look at a picture of him and just can not believe that this has really happened, that this was not just a bad nightmare but truelly real. My little Dude is gone and never will be with us again until it is our time to go. I miss him telling me "NO", telling me that he has to go potty, seeing him playing in his room. And not hearing his little laugh just kills me.
I keep asking myself "WHY"! Why did this have to happen to us, why our son, why did he have to get sick, why,why,why!!! I do not understand what we did so wrong that we had to have our little Dude taken away from us. Why couldn't he have had ALL instead of AML?Why did the chemo not work? Why could we have just been able to have our son and live a normal American life? I will never get to see him grow up, yes he will still have a birthday to celebrate, but with out the host,without the games and laughter,without the presents and other children to help in the celebration. It is hard to look back at the good times we us to have with him, because his third year of life constisted of hospitals,doctors,nurses,pain,side effect,loosing his hair,chemo,medication,IV poles,pumps,centeral lines,surgeries,x-rays, and the many other medical issues that go along with "CANCER". I hate to hear the word sometimes.
Please help in raising awarness for childhood cancer. Hug your children daily.

Love,
Stacie



Friday, January 30, 2004 10:15 AM CST

I have to apollogize for not updating sooner. I have had a very bad week and half. I know my doctor said and other people said that it was going to hit me when I least expect it. Well it has. The depression that I am feeling is so overwhelming, that sometimes I just do not know what to do anymore. My headaches are back, even though I am still on my medication,I do not want to eat and for those of you who know me and have seen me, this is not good at all. I am only about 5'4" and weight a little over 100 pounds. All I want to do is sleep or cry or mope around or do nothing. The other day I had to take Danielle to see her psychiatrist for her meds and it took everything I had just to get up and take her. I was a complete basket case there in her office. I had to explain myself to her and to let her know that I was not yelling at her that I just seem to let loose on people for no reason. That was when she explain to me about depression. And let me tell you something she described me to the "T". So know I have an apt. with my regular doctor so see about putting me on something. Hopefully there is something out there that will not have headaches as a side effect. I have been on antidepressent before put had to stop them because they cause headaches.
Also, I would like to some ideas from Dustin's visitors on how I can relax alittle more. Maybe if I learned how to relax and just calm myself down that would help. I would rather try sometype of relaxation therapy than to have to take more medication. I am still not working and money is tight right know. So if you have any ideas please send them my way. You can post them in Dustin's guestbook.

PLEASE READ IF YOU ARE A PARENT OF A CHILD THAT HAS/HAD AML. I AM WRITING A BOOK ON AML TO HELP NEWLY DIAGNOSED PARENTS. I NEED HELP IN FINDING CLASSIFICATION OF AML USING THE FRENCH AMERICAN BRITISH SYSTEM. WHAT THIS MEANS IS THE SUBTYPES. I NEED THE DIFFERENT SUBTYPES AND THE AREA OF THE BODY THAT EACH EFFECTS. IF YOU WOULD LIKE TO HELP PLEASE EMAIL.

GOD'S FLOWER GARDEN

Sometimes we can't quite understand
Our Great Creator's way.
When He takes a life so young
And leaves one withered, old and gray.
Whose life work seems finished,
Perhaps is waiting for the call.
While that life so young and tender
Held so much here for us all.
Then sometimes I get to thinking,
Perhaps this world down here below,
Is just a flower garden,
Where God's flowers live and grow.
And perhaps when God is lonely,
Like us, He loves to roam
In His garden, gathering flowers
Just to beautify His home.
Tho' He takes the full-bloom flowers,
Drooped and withered that need His care.
Still he needs a bed or blossom,
To scatter with them, here and there.
So He takes a few choice blossoms,
Just the rarest He can find,
And because God needs them up in Heaven,
Must comfort loved ones left behind.

In Memory of
Dustin Little
Nov. 24,1999-Dec. 17,2003

This poem was engraved on a plaque that was given to us by one of my mother's co-workers the day of Dustin's viewing.

Also please pray for Payton she is a 4 year old little girl with AML. Dustin and Payton became really good friend. Payton has relapsed and is needing another bone marrow transplant. Her mom Vanessa is not handling this at all. They were in the room next to Dustin when he had passed and Vanessa is seeing Little Payton going down that road. She does not have a caringbridge site yet. I am trying to come up with enough money to buy Vanessa a computer. I can get a new one for around $600.00 and so far I have raised $300.00. I know if she had a caringbridge site her CB family would really lift her spirits up. They helped me out more than anyone can know. So if you would like to make a donation please email at sal6171@aol.com

Let pray for all the children that are going through cancer right know. Pray that childhood cancer get known. If you do not talk about it with other, then how will it spread. Talk about it, tell others about, get the word out. Our children are our future. If we do not help support them, then we do not have a future!!!!!!
With all my love to you,
Stacie







Monday, January 19, 2004 2:15 PM CST


Hope everyone had a wonderful weekend. Mine was okay. Dan worked all day Friday and did not get home still around 10:00 that night and the weather was just awful. It poured cats and dogs all night. Then Saturday was offically 1 month since Dustin's passing and it was very hard on me especially since I also had to go to a baby shower for a close friend of mine who is having a boy. Also Saturday I spend the rest of the day and evening with Tim and Donna Culliver who's son Adam had passed away going on 1 year tomorrow from AML. Donna and I have gotten real close and we spent about 30 minutes out at Adam's grave site sitting on his bench just talking about our two boys and how we missed them so much. What we want to do for other parents and so on. We were also talking later that evening as to how some of these caringbridge site get so much graphics, photos, music,and backgrounds on ther sites. I have decided that I am completele a computer dummy. I have tried so many times to put different backgrounds on but just will not work.
Sunday was a day of rest and relaxation. I usually go by the cemetary everyday but Saturday I did not because it was still raining some so I went by there then. My heart was just about in my throat when I walked up to his site. The funeral home told me about how the dirt was going to sink when it rains and that they would have to add more dirt as needed but I guess you just never prepared for it. It really wasn't that bad but like I said you just never prepare yourself. The dirt had sank about 10 to 12 inch at the foot of the site and the head of the site was alright. It really didn't look to bad at all. Just a mommy over reacting I guess. Well anyway, I did have to highlight my nieces hair that morning but that afternoon I did nothing but look through some of Dustin's things.
I am still working on my Mary Kay website to get it back up and running. My goal for my business is to sell at least $36,000.00 in retail sale. Now I would normally make a 45 or 50 percent profit on that. That would mean that I would make 18,000.00 but instead I am going to be giving it to the National Children's Cancer Society. This organization helped Dan and I out alot with bills,food,phone cards,gas,lodging, you name and Dan and I have decided to give back what they have done for us to have them help out another family just like us that is in need of financial help. But I can not do this alone. It will take everyone out there especially the ones that know what I am talking about and the ones that really care to make this happen. I know that I have already have had a few emails requesting for my website address. And I already have had a few sales. I will be posting my weekly sales on this site so that way everyone will know were we are at and how much more we need to go for our goal. Lets all put our hands together and make a difference.

Praying for all the children facing childhodd cancer. Keep your smile on your face and your spirits up. You have tons of Angels watching over you.

Love,
SDDAD



Wednesday, January 14, 2004 6:24 PM CST


Happy Anniversary Dan!!!!!!!!!!

Yes it was our anniversary yesterday. Dan,me and Danielle went to go eat last night at Salt Grass SteakHouse. It has been eight years now. I know now that we can survive anything.

Sorry that it has been a week since my last update. We have been a little busy. Taking some much needed time away. Dan started back to work on Monday and seem to be doing okay. He said it would be better if they would send him to a different job site. Dan is still at Methodist Hospital working on the renovation of the basement from the flood damage a few years ago. It's been bringing back memories and he would just rather not be there. But because his job has been so good to him,letting him work so close to Dustin while during his treatment,Dan is the kind of person that will just stick it out. The job is almost over and is willing to hang in for the long hall. Dan is the kind of person that will but others first before himself and I guess that one reason why I love him so much. He has alway been like that. He will do anything for anybody. Will give the shirt off his back to help someone keep warm.

As for me, I been trying to keep myself busy too. I have a few thing going. I am trying to get my business back on the ground. I have been sell Mary Kay Cosmetics for about 3 1/2 years and eversince Dustin was diagnosed I dropped it all. Lost most of my customer and all of my team members. So I am trying to get my business going again. I have also thought about my business and how I can use my business in helping to raise money to fight childhood cancer.I have decided that a portion of my sales and commissions will go to Dustin Leukemia Acct. I have also been working on trying to get Payton Griffin a donor for her to have another Bone Marrow Transplant. I also been working on getting the awarness out on childhood cancer. Besides going to school part time. If you have any idea on how you might would like to help or would like to have a Mary Kay brochure mailed to you please email me and I will send you one. I will soon have my Mary Kay website back up and running again soon. Will let you know when.

Danielle has been doing great. She got her report card on Monday and got mostly all A's and B's no C's,D's or F's thank god.

If you have not gone to Adam's page lately please go by there soon. January 16 was the day Adam was diagnosed and was sent to TCH and on Tuesday January 20th it will have been 1 year since his passing. Tim,Donna and Andrew Culliver are having a Candlelight Vigil for Adam from 6:00-7:00pm at First Baptist Church Brenham.Adam Culliver


Please continue to send your encouraging entries. I love to read them everyday. Please pray for all the other little boys and girls facing life threating diseases.

Love,
Stacie

Tuesday, December 30, 2003 2:47 PM CST

I hope everyone had a wonderful Christmas.

It was great for all of us hear even though our sweet Angel was not here to join us. We all made angels christmas morning out of wire and beads and went to the cemetery. Said our christmas thoughts and goodbyes.

Even though I do not go to the cemetery everyday,I at least try to drive by there and say hi to him. We all miss him so much. Just the other day, I beleive it was Sunday, we were watching some christmas videoes of him from 2001 and 2002. It was hard to watch at first, but then it was just nice to think about how we have these videoes for our memories.

Our daughter Danielle was watching them too and has been talking about Dustin alittle more now. She also had told me and Dan that she wants another bother. Not one to replace Dustin but just wanted another bother. We told her that we did not have that decision and it we decided to have another baby it could either be a boy or a girl. We also told her that we needed to buy a house first and then maybe in a couple of years. I was a little shocked at Dan's reaction to Danielle's request. Dan had also mentioned about adoption and I said "no".

As for the way Dan and I have been feeling? We both have our good days and our bad days. Yesterday was a very bad day for me. Both Dan and I will be going up to the hospital tomorrow to take dinner to Payton and her family for New Years. She is a little 3 year old girl that was in the next room were Dustin was when he passed. Payton also has AML. I met her mom Venessa on the nineth floor and have become good friends. Payton has had a BMT about 7 or 8 month ago and has relapsed the same time Dustin did and now needs another BMT, but this time with an unrelated donor and they have not found a match. Venessa is getting very worried because she is not getting any answers from anybody and it is only time before something major happens. Right now Payton has only relapsed only in her genes. It has not hit her bone marrow yet.

If you would like to help find Payton a donor or to see if you could be a match for this little girl please go to their website for more information at WWW.MARROW.ORG.

Please help me help this family. This is the least that I can do for another family. I do not want them to have to go through what me and Dan just had to go through.

Hope everyone has a wonderful New Year.
With all our love,
Dan,Stacie,Danielle and Angel Dude

Wednesday, December 24, 2003 8:11 PM CST

Dustin's passing has been painful and saddening for all of us. Just last Tuesday he had a clinic visit and everything seemed OK. He received both blood and platelets that day and his blast were gone from his cbc. He was a little cranky and always tired but that was expected since he was running a high fever. Never in our wildest dream when Dustin woke up on Wednesday that that was the day. Dustin was very much in pain. His arms and legs hurt so much that he would not move. Also he had large blood blisters popping up all over his body. After a call to his doctor, we were on our way in by ambulance. They wanted us to be there as soon as possible and we figured that going by ambulance was the best way.

When they arrived I had told them that we needed to get the Texas Children's as quickly as we can. I had explained his back ground and what happening that morning. They checked his oxygen and it was about 79(norm 93 or above). They hooked him up the all the monitors and off we went.

When we arrived at the hospital they were waiting for us. Dustin cont. to be on oxygen and soon discovered that his counts had dropped alot. Dustin needed platelet again. We were told by his doctor that his cancer was now in his bones. That by the look of things that he would not be leaving the hospital. He was in a room shortly after we arrived and his doctor had set up all his meds that he would need. She also explained that this was it. That Dustin would not be walking out of this hospital this time. It was only a matter of hours that he had left.

As the day went on, the doctors con't. to increase in morphine and tried to make him as confirtable as possible. Nothing worked and his oxygen con't to drop. Finally around six in the evening the gave him something to put him asleep because he kept fighting. At that time we were told that he had at least 6-12 hours at the most. It was 6:15 when Dustin took his last breath. It broke my heart to have to see my sweet baby leave. To never be able to hold, hear his voice,see him,or even touch him was too unbearable.

But I know that Dustin is in the best place. With no more pain and is cancer free.

I would like to thank everyone for who has come to visit us,called us,sent cards,or even signed the guestbook. Those entries in the guestbook are what keep me going everyday. I may not always update but I do look at the guestbook.

I would also like to thank those who visited Dustin at his viewing Friday night. Sorry if I did not get a chance to talk to you. And last but not least thanks everyone for coming to his serves. It ment alot to me and Dan. I know that there was alot of people there and I am very sorry if I did not get to say hi or thank you for coming.

I know as the days go by it seems that it gets harder and harder. I see Dustin's stuff all over the house. I tried to do laundry yesterday and was folding some of his underwear and started crying because I knew that his little butt was never going to be in them again. Just little things I might see remind me of him and I do not know how to deal with these feelings of pain and sorrow. It hurts so much. I just wish that God did not have to take him from us. I would give anything to be able to hold him again.

With all my love to everyone,
Stacie,Dan,Danielle and Angel Dustin

Have a very Merry Christmas everyone.

PS sorry if I might have missed spelled some words or it sound goofy. My mind is not all there.

Thursday, December 18, 2003 4:56 PM CST

Funeral Services For Dustin Earl Little are as follow:

Viewing:
Friday December 19,2003
6:00-8:00pm
Klein Funeral Home
1400 W. Main
Tomball,Tx

Funeral Services:
Saturday December 20,2003
9:00-11:00 Visitation
11:00 am Services
Salem Luthern Church
22601 Luthern Church Rd.
Tomball,TX. 77377

I would like to thank everyone for there loving support while me and my husband go through this sadden event.

Love,
The Little Family

Wednesday, December 17, 2003 11:06 PM CST

DUSTIN SPENT HIS FINAL HOURS WITH FAMILY AND IS NOW CANCER AND PAIN FREE. DUSTIN PASTED AWAY TODAY AT 6:15 WITH ALL HIS FAMILY BY HIS SIDE.

UPDATE ARRANGEMENTS LATER.

THANK YOU

SANDY BROWN

Monday, December 15, 2003 6:49 PM CST

We were sent home on Thursday December 11th. Dustin continues to run a fever. Friday,his Aunt Sandy,myself,Dustin and a few of her neighbors rented a limo and we all were driven around to look at Christmas lights. He had a wonderful time and we all know Dustin needed it.

The Make A Wish was not able to get Dustin's favorite Monster Truck out for his party. They had a show in Virginia Beach. But GraveDigger did send him tons of stuff. The party was absolutely wonderful. There were so many people and so much food. Everyone really enjoyed themselves. Both Dan and I really appreciate everyone who had come on just a short notice. Thank you all.

As for Dustin and the way he has been feeling, Friday he was just misserable. Saturday was a complete turn around and even Sunday much better. Today Dustin has not be feeling to great. Sleeping alot and very grumpy. We go tomorrow to the clinic to see how his blood counts are.

Dan and I chose to do home health care since Dustin is still on 24 hour TPN. Hospice will not do home infusion and his doctor feels that it is best that we do home health so that way Dustin is still in her care. We will go to clinic at least once or twice a week for blood counts to see if he need any infusions. Dustin was also taken off all oral meds and is only getting pain medication through a patch on his back. That means that he is no longer taking his heart meds,no antibiotics or anything like that.

We just hope that Dustin will show these doctors that a miracle can happen and I pray for that miracle everyday.I have been dreaming that when the nurses give me the copy of his blood counts that his blast are dropping and his wbc is climbing. I so hope to see that tomorrow. Dustin appt is at 9:00 in the morning.

Hope to get some pictures up from his birthday soon.Need to let everyone go for now.

Love,
Stacie

Wednesday, December 10, 2003 12:09 AM CST

I guess it is time for me to update everyone. First of all I would like to thank everyone who signed Dustin guestbook and has given us and my family alot of words of encouragement and to know that Dusitn as touch so many hearts from all over the world. Thank you!!!!!!!!

Please continue to sign his guestbook, reading your messages has really gotten me through these rough days.

Now on Dustin. Dan and I spoke to a clinical trial doctor yesterday. Actually it was the same doctor Dustin had at the very beginning of his treatment,so it was nice to see Dr. Blaney again I just wish it was under different conditions. We spoke of the research that they are conducting right now and that Dustin might benefit from only one. The bad part about all of this is that Dustin has to be in good health,has had chemo for aleast two weeks and all organs functioning well. Dustin does not meet and of these criteria. First of all Dustin is not in good health,his oxygen is down,has problems with his stomach and so on. As for the chemo, it has only been one week since his last very low dose chemo and his counts are already coming back and he will not make another week with out at least a little chemo to get him through the holidays. And as for his organs, his heart is already damaged for the high dose chemo that he recieved after his second relapse and his pre-BMT treatments.

So we have decided to go with a Hospice. Dustin social worker and myself along with his doctor are setting this up so just as soon as we get that going we will be going home.

Dustin has been feeling somewhat OK for that last two days. The other night neither me or Dan or Dustin got any sleep due to Dustin being very uncomfortable. His stomach is very blowed and swollen. His oxygen level is starting to drop alittle bit and he continues to have this unexplained rash all over his body which is very itchy.

It has been very hard on Dan and I and we are just going to enjoy our time with him. Yesterday we got him out of his room and went to the playroom and to sit and watch him play was so hard on me. He is still so full of life at times and then he can look so drained. His wbc and blast continue to be rising and his doctor will start him on his Hydroxyurea and low dose ARA-C today and hopefully it his fevers stay down that maybe we will get to go home tomorrow.

WE ARE HAVING DUSTIN'S FOURTH BIRTHDAY PARTY FOR HIM THIS SATURDAY. IT WILL BE AN ALL DAY AFFAIR AND ALL FAMILY AND FRIENDS ARE INVITED. PLEASE NO GIFTS. JUST BRING YOURSELF AND YOUR FAMILY. IT WILL BE HELD AT MY SISTERS HOUSE CHARLOTTE. IT YOU NEED DIRECTION PLEASE EITHER EMAIL ME (EMAIL ADDRESS AT THE BOTTOM OF THIS SITE)OR CALL CHARLOTTE AT WORK (281-356-9499)OR HOME(281)356-3583.PLEASE COME AND JOIN US IN THIS CELEBRATION. ALSO PLEASE BRING YOUR CAMERAS. I AM TRYING TO GET AS MANY PICTURE OF DUSTIN RIGHT NOW AS I CAN.

Lot of love,
Dan and Stacie

Monday, December 8, 2003 8:51 PM CST

Things are not looking so good for our little man.His fevers have not gone down and they are now ranging anywhere from 101 to over 103. Still nothing has come back from his blood cultures as to whether there's an infection or not. Chest x-ray show really no change from the last one.

Dustin's counts, WBC and Blast are on the rise. WBC went from 940 to 1440 and his blast went for 6 to 17 percent.

We know that the transplant did not work and we have an apt. with his primary BMT doctor in the morning to see what our next treatment plan is and talk about what to expect in the coming weeks.

We were already told that this transplant of the lymphocytes were probably not going to work. That does not bother me. What does bother me is that I am so scared, scared of that day,scared to loose my only son,scared to know that he will not be around anymore,scared for our daughter,scared as to how we are going to go about our lives without our little dude and scared of the feeling that I will have and wonder how I am going to deal with it.

I sit back and look at Dustin and wonder if it is not for the best to just let him go. Knowing where is going,knowing that he will be in good hands,knowing that he will be free of all meds and be CANCER FREE finally. I know it will be hard on all of us,but we know he will be waiting for us when our time comes.

It is so hard to explain how you feel. You have so many mixed emotions. You are sad,mad,depressed,anxious,you grieve,feel happy to know that he will be free of all pain,no more meds,no doctors,no more blood pressures,fever checks,no more blood or platelets,no more hospital stays,no more clinic visits,no more central line,BMA,chemo,and no more cancer.

If we get to go home in the next few days, we will be having a little get together with all family and friends at the house for Dustin's birthday party he has not yet gotten and to have everyone around for some much need fun. I will be taking lots of pictures,so that way we have good memories of Dustin.

We are hopeing that his doctor will give him something so that way he can open his present on Christmas and not have to do it before then. I would really hate to do early and then something happen and come christmas day not have the spirit to enjoy the day for our daughter. I know that I have not been in the christmas spirit at all, but do have another child to think about and to be truthful I just can not get in the spirit.

I told my mother-n-law tonight that it took me and Dan nine month to put the precious little puzzle piece together to make our unique little dude with just the right amount of Dan and myself.And to have to sit back and watch those puzzle pieced be taken away from us and from Dustin piece by piece and not knowing what piece will be taken next just breaks my heart.

Well it is getting late and I just want to thank everyone who helped pray for our miracle.........Hey we tried and it didn't hurt trying.

Give your child a little extra hug each day for tomorrow might bring unexpected things and you might not get the chance to give your child that hug.

With all my love to everyone and their words of encouragement thanks a million.

Stacie

Sunday, December 7, 2003 10:14 PM CST

GROW CELLS GROW!!!!!!!!!!!!!!

I do not have any good news. We are back in the hospital for a fever. We arrived around one in the morning and was in our room by 5am. Still do not know what is causing the fever. Dustin has also been vomitting alot too. His doctors put him on antibiotics.

His count for today were OK. His wbc had doubled from Thursday (476 to 940).His blast went from 4 to 6. Not good,but still not that bad either concidering how much his wbc went up. As for his immune system,his ANC is at .03. That means that there is only 3 little cells in his whole body fighting any infection he might have.

We did not get a chance to get a tree this weekend. One,it was way to cold for him to be outside;two,I was busy cleaning Dustin and Danielle's room. His memaw will have to go without her grandson to get a tree.

Hopefully we will be back home in a couple of days. So that Dustin can help decorate the house. Please continue to pray for Dustin and pray that his cancer will go away,for a miracle to happen,and for Dustin to be able to enjoy Christmas at home and not in the hospital. Also pray for the other sick children that are fight this same battle and someday there will be a cure for cancer.

Lots of Love,
Stacie

Friday, December 5, 2003 5:04 PM CST (day 84 post-transplant)

Dustin visit yesterday went good. He only needed platelets and his once a month IV infusion for the PCP. Type of antibiotic to prevent a certain type of pneumonia. His counts were very low,no immune system know,but is doing great.His blast counts are still at 4 percent,no change since Tuesday. He also has to stay on 24 hour TPN because he refuses to take his potassium.I have tasted it before and I think I would rather be on 24 hr TPN too.

Today we had some pictures done but only got a few taken since it was to cold and windy for him. Tomorrow we are suppost to go get a christmas tree,but it is going to be even colder tomorrow than it is today. May not be going.

Dustin is running a low grade fever,around 99.5-100.1. His doctors think it is from his immune system since he is neutrapenic.As long as it does not reach 101 I will be fine.

Everything else has been great. We are all glad to be home and sleeping in our own beds,maybe not Dustin,but mommy is sure glad to back in her bed.

His next appt. is on Monday and his next BMA is scheduled for the 17th.Keep praying everyone.

GROW CELLS GROW!!!!!!!!!!!!!

Lots of love,
Stacie

Wednesday, December 3, 2003 8:50 AM CST (82 days post-transplant)

Just wanted to let everyone know that yesterday about 3:00 pm Dustin recieved his lymphocyte transplant. Everything went fine, and around 7:30 last night we got to go home.

Dustin has a clinic visit tomorrow,but it will be anywhere from 1 to 2 weeks for the cells to go where they need to go and start growing. GROW CELLS GROW!!!!!!!!!!!It should be just a regular visit of check his blood.

Just keep your fingers crossed and hope and pray and what ever else you would like to do for our little miracle to happen. We are going to give Dustin his much need birthday cake with candle for him to blow out the weekend and maybe get ourselves a real christmas tree this year. We have not had a real tree since he was born and I think it is time for one. We will be going to one of the Christmas Tree farms around the area. Will take some pic and hopeful I can get one of my sisters to add them in his photo album.

Need to let you go, I am in process of trying to figure out where to put all of Dustin's toys that he has recieved troughout his treatment.

Please do not forget to visit Katia's site at caringbridge.org/fl/katia_leukemiapage.
And also visit Adam Cullivers site at caringbridge.org/tx/adamculliver. His family is having a hard time right know with the holiday coming up. I have gotten real close to this family and would love for ya'll to visit his site and leave a message.

Lots of Love,
Dan,Stacie,Danielle and Dustin

Monday, December 1, 2003 8:54 PM CST

First thing that I would like to do before I update is thank those who came to visit us.

Memaw and Papa,Grandma and Grandpa,Aun Charlotte and Uncle Dewayne,Lexie too. Aunt Sandy and Uncle Greg with Brittany and Robert, Aunt Stephanie, Uncle Rich,My boss Lana and her Husband, Mark and Alicia, Linda Horak, Donna and Tim Culliver with Andrew,Great Aunt Dee and Great Uncle Johnny with second cousin Kevin, Great Aunt Beverly and Great Uncle Ray with second cousins Christpher and Bradly, hopefully I am not missing anyone and if I am sorry.

For the phone call that we have reseved: Marie for my work,Camille Husley, Alicia,Aunt Sandy,Aunt Charlotte,Dr. R Aunt Donna, Uncle Bobby, Grandma, Great Grandma "G",Sandy Capps and the many others that for some reason I just can not remember.

Thanks for those that have donated money to Dustin: Tina and Stacey Roehling (donation,calling cards,gifts for both Dustin and Danielle) you guys are absolutely amazing.To my Aunt Bev and Uncle Ray-thank you so much for the donation and for the visit, it meant alot to me.

Now for Dustin's update. Over the weekend Dustin's attitude has improved. He's playing and laughing more, which to me is a sign that we are heading in the right direction. His counts did drop some on Saturday,but stayed the same on Sunday. Blast were at 2 percent both days and things looked really good. His chest x-ray come back with an all clear. So I do believe that this is a sign from God.

Dustin has not had his lymphocytes yet,due to his counts not reaching the disired level. As of today his total wbc is at 1.2 and they need to be below 1.0 in order for the transplant. His blast are at 5 percent up 3 from yesterday.

We will be going home tomorrow without the lymphocytes and will return on Wednesday in the clinic to recieve them there. Alot will be going on once we get him home. Do stuff with him and Danielle and just enjoying our time together.

If anyone would like to make a donation in honor of Dustin please mail it to 16303 Cimarron Dr. Magnolia, TX. 77355.

Once again thanks everyone for your support while me and Dan fight this battle along with Dustin. We know in our heart that miracles do happen. With all our love we will conquer.

Their is a little girl named Katia and her mom has helped us with many prayers and support from people who come and visit her site. I would love it if you would please visit Katia's site and add a few words to her guestbook.

caringbridge.org/fl/katia_leukemiapage

Love ya lots
Dan and Stacie Little

Friday, November 28, 2003 11:08 AM CST

Nothing has really change for Thursday. His blast cells did not go down, but they did not go up either. His total WBC count did go down which is good. So over all his count were good. His doctors increased his Hydoxyurea again and is now at 2mg a day. We are hoping for Saturday or Sunday for the lymphocytes.

We did have a good Thanksgiving and Dan stayed with Dustin yesterday while I went home to spend the afternoon with my family and dinner.Then I brought Danielle to the hospital and the four of us stay the night with Dustin.

As for today, we have not recieved his CBC yet so I do not know what his counts are like today. Dustin will have another chest x-ray done today to see what his lungs look like. His doctors have not come in for there visit yet so just as soon as they come in and look at Dustin and to tell us what will be going on.I will update. Thanks for all the prayers and lets hope for that miracle.

Hope everyone had a wonderful Thankgiving.

Love
the Littles

Wednesday, November 26, 2003 11:06 PM CST

Well today was on ok day. His oxygen level was good and he did not need any. His blast cells did drop some,about 5 percent from 22 to 17. His doctors are going to con't. with the meds that he was on yesterday. They did increase his hydoxyurea again. We are hopeing by Saturday that his blast cells will be at an approiate level to get his lymphocytes. His doctors are not selling us on the idea that this will work. They know that his cancer will return at some point in time. The only thing that this will do is prolong his life with us. How long? We do not know. It would have to be a miracle if this does work and I am going to take every little bit of hope that I can. You never know, this could be the one treatment that might actually work. I am will to take that chance.

I am doing alot better today that I was yesterday. I think that because of me crying so much that today I have no more tears left to shed. I do want to thank everyone for the phone call, the visits and the prayers that we have received. What is going to be hard for me and Dan is telling our daughter that her little bother might be earning his angel wings. I have not found the right words or maybe do not know what to say to her. I any of you have any suggestions please let me know. She is 8 years old.

I guess I will let ya'll go because I am having a hard time trying to find the right words to say.

There is one person that I would like to thank and that is Tracy. She is the mother of a little girl named Katia. They live in Florida and Katia has AML and has relapsed. She is waiting for her Bone Marrow Transplant,but has not found a match. She has listed Dustin web page and has asked people who visit Katia's to please stop Dustin and give me word of encouragement. I do have to agree with Tracy. To sit and read the entries helps mecope with the stress that we as parents who's child is facing cancer be at ease. And to know that his story is touching so many lives around the world.Thank you Tracy so much. Give miss Katia a big hug from us. Please visit her site at caringbridge.org/fl/katia_leukemiapage.

Love lots
Stacie and Dan

Tuesday, November 25, 2003 11:47 AM CST

This is going to be the hardest entery that any parent has to do. We were told this morning that it is most likely not pnuemonia or an infection. Our worst fear has happened. His lung are filling up with the luekemia and his doctors are going to try giving him small amount of chemo to see how he responds. But Dr. Krance had said that because of his past and Dustin never going into remission and that all other treatment have failed that the lymphocytes would probably not work either. They will give him the chemo for a few day and if nothing happens then we will just spend the rest of Dustin's day with him at home. We would have the option of when it is time that he be placed on a ventilator.

I just can not beleive that it has to end like this. I was so hopeing that Dustin would have his transplant and be put back and remission and we would spend the rest of our lifes as a happy family of four.



Stacie and Dan needs thier family and friends at this time. Please feel free to call or even visit at the hosptial all are welcome. We wish for you to pray for our family at this time, for Dustin to be with us as long as possible.-Sandy

Monday, November 24, 2003 9:04 AM CST

HAPPY BIRTHDAY TO YOU,HAPPY BIRTHDAY TO YOU,HAPPY BIRTHDAY TO DUSTIN HAPPY BIRTHDAY TO YOU!!!!!!!!!!!!!

TODAY IS YOUR BIG DAY DUDE!!!!!

HAPPY 4TH BIRTHDAY.


We did find out late yesterday afternoon that his blue lumin(blue centeral line tip) has an infection. So hopefully that it clears up and we do not have to pull it. Dustin had a really rough night and was constantly waking up.So right know he is sleeping so sound.

Know for some more bad news. Dustin's blast count yesterday was only 7 percent, well today they jumped to 15 percent. The question the doctors are asking is, should they increase his Hydroxyurea which slow the growth of the WBC and if his blast get to high will the lymphocyte transplant work and is some of the fevers that Dustin is having from his luekemia? They should have the answers for these question later after they talk to his main doctor Dr. Kuehnle who is on vacation this week.

I want to thank everyone the their generious messages of encouragements they mean a lot to me. Thanky Great Aunt Verna and Uncle Tommy for the gift card and money for Dustin's Birthday. Thank you June and Jake for the Hot Wheels, Thank you MeMaw and Papa for the cool DVD's that he can watch on his labtop and Thank you Aunt Charlotte for the Tonka dump truck, Grandma and Grandpa for the video,clothes and Bob the Builder toy. And to the others that sent him gifts thank you so much.

Just as soon as I find out what the doctors are going to do I will update everyone. Need to let you go, Dustin is about to take his meds and that is such a job for him to do that he get himself so workuped and upset that he litterally makes himself sick.Talk to ya'll later.

Love
Stacie

1:37 pm

Well his doctors just came in and let me know that we will be here at least till Wednesday. We also found out that they will increase his Hydroxyurea to 1ml instead of .5ml to see if that will slow down his WBC and blast. If not they will probably have to give him one dose of chemo(ARA-C) to get the blast down to a suitable level. Let pray that does not happen. Dustin also got another nasal wash to see if the Picornavirus is still present in his sinuses.

Love lots,
Stacie

10:51 pm

Well a quick update to let everyone know what has been going on this evening. Today I have noticed that when Dustin would fall asleep he would moan as if he was in pain,but when you would ask him if anything hurt he would tell us no. So we pretty much let it go. Later this evening I guess around 6:00 pm, he was moaning again so I had asked his nurse to see if we could check his oxygen level to see if that could be the cause of his moaning. I guess a mother just know there child. Because when the nurse but the pulseox on him toe, his oxygen level was in the mid to lower 80's. The norm is 93 and above. Yet his doctors check his lungs and that was all clear. Dustin did have a little bit of fluid on him since he had not been peeing like he normally does. And ordered a chest xray. Well I was just in formed that his lung have a little bit of pneamonia,so they will be adding another antibiotic and something else. I stay seems like it is going to be a little bit longer than we had hoped. I just pray that it does not get any worse were we have to be in ICU. We have been very lucky on that part. Not on some wood. It would just break my heart to have to go there. I have heard some parent on other caringbridge site talk about their experience and it scares the (parden my language)hell out of me.Dustin is sleeping right now and is moaning a little louder that he was earlier. He is on blow by oxygen at the moment, until I guess he has to have it all the time. This has always been my worst fear through out his whole ordeal. Well it very late and I know it is going to be a long night. I will let everyone know what the doctors say. They will be here first thing in the morning to talk to me and Dan about this new situation. Pray that Dustin get over this quickly and with no complication.

Very down mommy,
Stacie

Sunday, November 23, 2003 12:39 AM CST

Baby I am so sorry that you had to miss your birthday party today because we had to come back to the hospital for a fever. Your Aunt Charlotte will tape it for you so that way you can see how your party went.

One more day till your actual birthday sweety!!!!!!!!!!!!!

Yes we are back in at Texas Children's for a fever. Dustin started running a fever early yesterday morning while I myself was at the doctors office for an MRI. I do have to tell you I will not know what the result will be until Tuesday when I return to the Neurologist. Dustin was running a fever of 101.9, which was extremely high for him since the doctors say that 100.5 is there fever point for BMT patients. By late afternoon it had dropped to 100.8 which was a lot better than earlier that day. They immediately started him on antibiotics and moved him from the ER to his room on the 8TH floor within a couple of hour,which was a record for us. Everybody knows how long of a wait it can be. We did have on lady cuss a nurse out because we had come in and immediate went to a room and they had been waiting for an hour. The nurse explained the situation to her and I guess she realised the circumstances. After we arrived in our room they drew blood cultures and so far as I right know they have nothing. Dustin did spike a few fevers through the night of 103.0. So I have nothing to tell as to what it could be that is causing his fevers.
Dustin is doing just fine and his grandma and grandpa will be here to visit today. Thanks for all the support and prayers that this lymphocyte transplant/infusion works and we can get our little boy back into remission.Love ya'll and hope everyone had a wonderful weekend.

Stacie

Friday, November 21, 2003 10:07 PM CST

Three more days still you turn four my love!!!!!!!!!


Nothing has really changed from yesterday. We had another clinic visit today which was very short. Dustin did not need and transfusions thank god because our appt. time was so late in the afternoon. We did have alot of visitors today while at clinic. Alot of people have found out that Dustin has relapsed and had come by to see how we were doing. It ment a lot to me and to Dustin even thought he was very cranky and fussy today to have those people care so much to come and see how we were doing. Thank you so much. Also I want to thank Thelma Burke for checking in on us to during her very busy life. We came in contact with each other through CanCare. Her daughter was about 12 when she was diagnosed with AML and is know I believe 28. Thelma helped me out alot today. She let me tell her what was on my mind and how I felt about what was going on. Thank you for listening to me, I really needed to get it off my shoulders. I would also like to thank everyone for posting messages to the guestbook. I love reading the entries, they help me get through those tough days with the words of encouragement.
Dustin like I said was very fussy today,no fevers but he did have a new rash. I thought maybe it could have been from the new medication that he was taking to help slow down the production of his white blood cells. Dr. Kuehnle looked at it and thanks that it might possible be GVHD. But she is not sure since he still has some of his old rash still present. If this is the case then we will not procede in the transfusion of the lymphocytes. So lets pray that this is the beginning of GVHD. I know that it is not good to get GVHD and can be fatal, but just a little GVHD would help him. Other than that he is doing very good. I do not know if he know that his birthday is coming up real soon. Dustin is not the same little boy that he used to be. He does not talk much at all, very rarely plays and every know and then you might see and smile or get a laugh out of him.So since he does not talk I do not know If he understands what is going on. Do not think he does nothing at all, he does play some and talk some but just not like a boy who would be turning four would normallly be.
We still have not heard anything out about getting his ears rechecked for hearing loss and any news about how his heart is functioning. Hopefully this will be done soon so that if there is any problems we can get them fixed now why he is still young and will not have any memory of it.Well I will let you go I have an early morning tomorrow with a doctor for my MRI. Will tell you about all that tomorrow. Give your child or your grandchild an extra hug for me and Dustin and pray that everything turns out for the better. Give thoughs children that are facing a life threatening illness some much need prayers. With all my love.

Stacie

Friday, November 21, 2003 0:05 AM CST

I forgot how many days Dustin is post-transplant,but it does not matter now. I have not updated because I thought just maybe this nightmare would go away and that this was all just a dream or a very good practical joke or just maybe a really good April fools joke. Well since it is not April,I'm not sleeping and as far as the practical joke goes there is no one around. I can tell you that my saddness has now come to anger. Yes,Dustin had his test on Monday and it was not good. I new that on Friday when his doctors gave me a copy of his labs and I noticed that his blast were there. His test on Monday showed signs of early relapse. We do not have the final result back yet, hope to have them tomorrow. Dustin engraftment is failing which means that he is not at 100 percent anymore that the leukemia is coming back.
Dr.Kuehnle was a little upset on Monday as well as Dan and I. We all thought he was doing so well. Dr.Kuehnle has decided to contact the Donor and see if he will donate some lymphocytes. Let me tell you what that will do. At the beginning or actually right after his transplant they started Dustin on FK506 which is an antirejection medication which depletes the lymphocytes T-cells. Your T-cells are what fight off foreign substances,bacteria and other stuff. If Dustin would have had any T-cells he would have developed the graft versus host disease. That we did not want. But if you get just a little of the gvhd then that can be good because that would fight off any cancer that remains in the marrow. Well Dustin never developed GVHD even after they stopped giving it to him last Friday to see if he would develop any GVHD over the weekend. Nothing. So they are going to give him the T-cells that he need for the GVHD and hopefully this will help. I know that Dr.Kuehnle had said that it might take a few time before it works. We are looking at next week for this procedure to take place.
We will not have to be inpatient, this will all be done on an out patient basis. I can tell you that I have completely lost all train of thought. I am very angery that this as happened.I am angery at god for him to let this happen,angery at the cancer for not leaving my son alone that he has been through enough and just mad at everthing. My anger has been so bad this week that I took it out on an innocent person the other night for no reason. I have completely lost control of myself, my family, and any decissions that need to be made. I wish god would just explain to me why this is happening and for what reason that he had to pick my son for it.
Know on to some good news. Dustin's birthday is just right around the corner. We are all getting excited about it and still have no idea what to get him. I have also been working with one of my sister's on my days off from clinic to help with some of her sewing. She own her own drapery bussiness and has been doing very well since she has started. So I decided to help her out for the time being and try to help bring in some much needed money for all the medical expenses and bills that are starting to pile up. But I'm not to concerned about that or get my self stressed over that. I have learned that over these last several month about what is important and what is not so important. Yes I know that our bills have to be paid but if you do not have the money to pay them then why stress over it. I have more important things to have to worry about. Anyway I will try really really really hard to get some birthday pics on his site this weekend. Thanks for all the messages,I really like reading them to Dustin and Dan. Keeps the prayers coming and pray that this treatment that is planned will work. Love ya'll very much.

Stacie

Thursday, November 6, 2003 8:58 PM CST (day 55 post-transplant)

Thursday,November 12,2003 12:55 PM CST (day 61 post=transplant)

So far everything has been going good with Dustin.He had a wonderful weekend and had an appt. Monday with needing both blood and platelets. Dustin did have an appt today and did not need anything. I did ask Rebecca his nurse practioner about his BMA and spinal tap that was done last week. His spinal fluid were clear. Yeah, his meningitus is finally gone.His BMA-he is still 100ercent engrafted and there is no signs of the leukemia,but Dr.Kuehnle did see some cytogenetic with adnormality with only a few cells (9 out of 200). She did say that this was not present before and would like to do another BMA on Monday and does not know what it is they are looking at. I just hope that Dustin's test on Monday come back just fine and that there must have been some type of contamination with the other samples.He has been doing so good with all of this that we do not need this.
Also, just a reminder to our friends and family that would like to know, Dustin's birthday is only 12 days away on the 24th. We will be celebrating his birthday on the 23rd. That is a Sunday and will be someting in the afternoon. We will be having it at his Aunt Charlotte's house. And for the people that want to send him something, can send it to:

16303 Cimarron Dr.
Magnolia,TX. 77355

Please address it to either me(Stacie)or Dan thank you.

I am tring to get some new pictures on his page and in his photo album,so please check back often. Reminder, please pray for a healthy BMA and for all the other children facing cancer. Pkease spread the word about Dustin's site to others. Thank you and god bless everyone.
Stacie


Thursday,November 6, 2003 8:58 PM CST (day 55 post-transplant)

Hew guy's I am really really sorry for not updating,you see I have been trying to bruce up Dustin's site and well it has taken me a little longer than I thought. It looks easy but let me tell you, it not. I have been going back and forth with some of the other cancer caringbridge parents on how they did it. I still not done so keep checking everyday for I might have something new. Also please pass his web page address around to others you might know. We are not getting that many hits and I would like to see more if possible.
Well for Dustin's update. Everything is looking good as for his liver and gall bladder. The doctors could not find out what caused it and just as quickly as it came on, it left that way too. Think god no damage there.His counts very for they are not stable and will not be for sometime. Also he has a rash that his doctors can not explain so they are blaming it on a virus. It seem to really itch Dustin alot. All me and Dan hear all day and night his "my leggs itchy,my back itchy,or itch it I can't". Oh, I do have some good news, well good news to me and Dan.....Dustin eye lashes and eye brows are starting to come in!!!!!!!!!!!!!!!!!!
Wednesday Dustin had his BMA,biopsy and an LP. Do not have the result back from that but will probably know something tomorrow when we go in for some infusions. I thing he will have for different infusion tomorrow,1 will packed red blood cells,2. will platelets,3. will IVIG (this is a once a month infusion to prevent pneumonia)and 4. some other type of infusion that I forgot what it was. But so far everything is looking good and we only have 45 more days until his 100th day. Please pray for all the children that are going through this awful disease they call CANCER. I want to thank everyone for visiting and signing the questbook, please keep the messages coming. I do read them to Dustin, so don't think he doesn't know whether you sign or not.God bless and love ya!!!!!!
Love
Stacie

Wednesday, October 29, 2003 7:52 PM CST (day 47 post-transplant)

It was not a good night for Dustin at all. Around nine last night I gave him his meds and then about 9:30 he started to complain about his tummy hurting and that he wanted his tummy medicine. I gave it to him and about 30 mins. later he got sick. I figured that that was what he needed to do to feel better. That was not the case. Only a few minute later he started complaining about his tummy again. This time I thought I would wait to give him his other tummy medicine. Instead he was asking for it so I gave it to him. Not even a second later there it was. So I gave him another dose to see if it would stay in since he just got sick and there would be nothing in his stomach. It seemed to be working and then here it comes. With in two hours Dustin vomitted at least 10-15 times and by then he was screaming that his tummy hurt. I just knew that I was going to get a knock on the door because here is Dustin screaming at the top of his lung in a hotel at midnight. I call the BMT floor and told them what was going on with Dustin. They told me that they would contact the fellow on call and have them call me at the hotel. After talking to the fellow Dustin decided to take a little nap so we both decided(fellow and myself) to see if he would stay asleep and wait until in the morning when we had our clinic visit. Well that only lasted about 30 mins. So at 1:10 am in the morning Dan, Dustin and myself took our short little 15 minute drive to Texas Childrens. I do have to admit something.....that is a much better drive than the hour and a half it takes from our house. We waited in the ER for about five hours before we were taken upstairs to the BMT floor. There is nothing more frightening to a mother with a transplant child or a child that has no immune system is to be in the ER with a bunch of sick children and knowing what could be lingering around the halls. I made sure that I brought his own pillow, blanket and plenty of antibacteral wipes with me. I do have to admit that I did not have any problems with any of the nurses to have to wear gloves,isolation gown and a mask to protect him from anything that might be around. While in the ER they did give him some Zofran by IV since he could not take anything by mouth. That seemed to settle his vomitting but did not help the pain that he was induring. It is so hard as a mother to sit and watch your child go through such pain and not be able to anything for it. They also drew his labs and cultures on his yellow line. After waiting for sometime for the doctor to come in he let me know that his counts looked great nothing wrong with that,but that his liver panel was a little high and that he was going to contact the BMT fellow on call to see what they wanted to do. So we waited a few more hours....by this time I had not slept and will not sleep in any room in the ER. I have already had one bad experience with that place,do not want a repeat.
It was a little after 7:00 in the morning when Dan arrived to see what was going on when the nurse came in and told us that our room was ready. Think god, I was ready to leave. By this time I still have not slept a wink, but Dustin sure was sawing some logs. Oh forgot to let you know he wasn't runny a fever. When the BMT team finally came around to his room they were alittle concern about his livel panel level and though maybe his liver could be enlarged and that Dustin might be getting Graft Versus Host Disease. So they ordered a ultra sound of the lower abdomen,a nasal wash to see how his Picornavirus is doing,stool sample to check that virus and a blood culture of the blue line that was not done in ER.
Well it was about 2:15 when they came and got Dustin and I for his ultrasound. I just do not know how anyone can tell what things are on an ultrasound....to me it looks just like a snowy picture screen on a tv and your trying to figure out what show is playing. After we got back daddy was there in the room waiting for us. It is so nice to have Dan working so close to the hospital. Only about 10 minutes through the tunnels. His workplace is working on a hospital and they are remodeling the basement floor after the major flood damage some few years ago. I left at that time to go back to the hotel to take a much needed shower grab some clothes for both me and Dustin. When I got back the result from his ultrasound were back.
It showed that his gallbladder was alittle inflamed and that there showed some matter which looked like crystals. So instead of just watching it like they would any other child that might have this, they are not doing that with Dustin. The reason for this is due to his history with blood infection in the past....lord know he has had his far share of them. I think I am going to have to give Dustin a new nickname. Instead of Dude like daddy calls him, I thank I am going to call him my little bug!!!!I do have to admit that my son is very well known by all of the Leukemia team for his numerous infections. So they have put him on three antibiotics and is just going to see how his gall bladder is in a couple of days to see if there would be any change. Then they will go from there to see what needs to be done next(whether it needs to be removed or to see if it will remain infection free).
So we are back in the hospital after only 12 days out. I do have to admit I enjoyed it while it lasted. I do feel sorry for Dustin for having to miss halloween this year,but was told His Grace Foundation always does things for the children on the floor.Well gotta go and just wanted to thank everyone for there love and support that you have given us during these last eight months.

Love,
Stacie

Sunday, October 26, 2003 10:40 AM CST (day 43 post transplant)

Well I am so sorry that I have not been keeping up with his updates for ya'll. Dustin has been doing wonderful the past week. We have been at the clinic alot due to his potassuim level. Dustin body is not holding his potassuim so we have been at the clinic just about every day for potassuim infusions. His doctors seem to adding to his meds to. Now we are up to I believe 8 or 9 by mouth. They keep adding because they are trying some things to see if they can maintain his potassuim. We have been noticing that Dustin is eating a little bit of food, not much but anything is better than nothing at all. We have another clinic visit on Monday to check all blood levels and maybe talk to them about having his ears retested for hearing. Well only 4 weeks until Dustin 4th birthday. This birthday is going to be very special to all of us because Dustin got a second chance at life and this will be celebration of that chance. If it wasn't for our wonderful donor, Dustin probably would not have gotten a chance to turn 4. We will have a small celebration on Sunday November 23....the day before his actual birthday.

Tuesday, October 21, 2003 8:47 PM CDT (day 39 post-transplant)

Well it has been some week so far. Dustin had an appt. on Sunday at the hospital to check his counts. He ended up needing both red blood cell and platelets that day so our whole day was spent at the hospital....from 9:00am till around 4:00pm. Other than that he was just fine. His doctors did add another medication to his already 5 that he has to take by mouth and are having a time with that one. His doctors were very pleased by the way he looked. Monday was a day of.....getting much needed sleep! Today he had his first clinic visit at the BMT Clinic. We arrived early just so that maybe we will get out earlier. That was not the case. We went in for blood counts and had to get some platelets and because his potassium was low from Sunday and would not take it for me at home....they come him some at clinic. After recieving his platelets Dustin decided to get a reaction from them, so we ended up waiting about an hour or so for his reaction to clear up before they could even give him his potassium....that ran over 2.5 hours. By the time that we were done his doctors added 2 more medication which make, I think ,8 know by mouth and was out of the clinic by 5:oo. What a long day, but my day was not even over when we got to the hotel.
This is my evening at the hotel every night. After I pick Dan up from work we usualy get back to the hotel around 4:00 or a little after, start dinner, take out his IV Fluids and IV meds, get all of his oral meds out and measure them. It takes me a couple of hours to get his IV stuff done so that I can hook him up by 6-6:30. Start him on some of his oral meds and some have to be given twice due to him getting sick from taking so much. By the time that I am done I am so exhaut that I can not get enough energy to update. Though his visit was long it did go good. Dr. Kuehnle decided to adjust his potassium in his TPN so that way I did not have to fight Dustin to take it by mouth.I did ask her about him laying around so much. She had told me that that was normal because that is his way of letting his body rest and heal up from all that he had gone through. Well it is getting late and I have to get up early to take Dan to work by 7:00 so I will try to update earlier in the day tomorrow. Love everyone.

Saturday, October 18, 2003 8:28 PM CDT (day 36 post transplant)

Well it has been a wonderful day today, had a little bit of a problem with taking his medicine. Threw it all up,had to take a bath and while in the tub had a bowl movement. So we had to have another bath again this time to remove the stool off of him. Little crazy but not to bad. We did not get to stay at the Homestead due to some problem in the reservations, so we ended up at a place called Candlewood suites. The phone number here is 713-836-9411 ext.6140. I had home health care come last night and bring me Dustin's medications and help me hook him up to his centeral lines and remind me what I needed to do. Pretty simple but Dustin was not happy at all about being hooked up again. He got to see and play with his Danielle and see his MeMaw,PaPa,Aunts,Uncles and cousins. They were so glad that he was finally out of the hospital. Dustin did seem to mind his nurse yesterday at all since he new that he was leaving. He got to ride his bike out of his room and onto the elevator and down to the parking garage. His face just lit up when we were pulling out of the parking garage and he could see the sun. I wish I had a camera on me to have taken a picture to show everyone. He has an appt. tomorrow to have labs drawn to check the level of his counts and an appt. on Tues. at clinic at 9:00 in the morning. I can not believe that we finally have the status of outpatient. Way to go Dustin!!!!! Keep up the good work!!!!!!!!!!Lots of love to everyone and thanks for all the support that ya'll have given us. I know that we still have a long road ahead so we still need the prayer for good health and no infection of anykind. Have a wonderful weekend.

Friday, October 17, 2003 1:32 AM CDT (day 34 post transplant)

Well another day gone. And it has been a long one at that. Nothing has change with Dustin except that he has been playing around with a little fever late this evening. It goes up and down, nothing higher than 100.5. It is like we check it one minute and it is at 99.5 then an hour later it's at 100.5 then later at 100.0 then at 100.4 and just know at 1:15 it was down to 98.7. It is like ok do I want to go home or not. So today is our big day to finally get out of here...as long as you no who straightens his temp out and tell them who's boss. We did get an organization to fund our lodging at Homestead. Which is big relief for us both. I never knew just how much we have accumilated until me and Dustin started packing stuff. I think I need a UHaul truck to get everthing out. We did get the results back from his bone marrow aspiration....STILL AT 100 PERCENT)!!!!Yeah!You go boy!!!It will be nice to get out of here after being in for a little over 3 months and just about had every bug possible. Just maybe when he is out we will not have that many infections.
We still have a long road ahead of us which consist of clinic visits 3 days a week and lots of infusions. Our family of four is almost a family again and that is something that Danielle is missing so much and wants so badly. I know that is has been so hard on her and for her not to able to see or even play with her bother is hard. They have always been close and she has always been there for Dustin doing things for him ever since he was born. Now just hoping that by Christmas he will officially be home with his mommy,daddy and his sissy. I will let everyone know the phone number of the place where we will be staying.Lots of love to everyone.

Wednesday, October 15, 2003 8:23 PM CDT (day 33 post transplant)

Sorry everybody for not updating sooner. Everything has been just fine. His meningitis is gone,but his doctors still have him on his antibiotics. Dustin still have that one virus that is in his stools so his stools are still loose. But he did come down with another virus which is Picornavirus which I have been told by the nurses that only the children that have had a BMT get this kind of virus. I do not know what area if affects but will find out and let you know. I do have some good news....We get to get out of here on Friday as long as nothing goes wrong. We do not get to stay at the Ronald McDonald House due to his new virus.So our social worker is looking into a hotel or something like that. So our expence will almost double or trible in cost from what the RMH would have cost us. I know that we are looking in to SSC for help with the living expences and some other organizations. It seem like we go from one problem to the next and can never seem to get a break on thing.
Back to Dustin, he has been doing so good and the doctors are amazed at how well he is doing. He did have another BMA and a spinal tab done last Friday and have not gotten the results back from the BMA but did some news from his spinal tab. His first spinal tab the white blood cell were at 30,000 and the one from Friday they are at 12,000 which is great.Well that pretty much explains everything for the last week. Since everything is going good I do not have much to say,except pray that everything stays the way it has been so that way we can get out of here.

Wednesday, October 8, 2003 8:51 AM CDT (day 26 post-transplant)

I know that it has been a few days since I last update and everyone is wanting to know what is going on. Dustin does not have cancer in his spinal fluids. We were told by the infectious disease team that it is meningitus. At that time we did not know if it was viral or bacterial. They were very happy at the way Dustin looked. Here was a child that has meningitus and you would not even know it. The infectious disease team are con't his antibiotics and did find out what type of meningitus it was on Monday. At this time I can not remember the type of bacteria it is. This had come from a line infection that he just recently had. Dustin is still running some high fevers only late at night when we need to be sleeping. Dustin had another CT scan done on Monday of his head to see if there was any swelling and that came out fine. He had another Ctscan yesterday to see if maybe the fevers were coming from a fungal infection so they took a scan of his chest and lower abdoman. Do not have the results of that yet. Will update more later. I almost forgot, we did find out late Monday night about Dustin bone marrow biopsy. HE IS 100 PERCENT ENGRAFTED!!!!!!!!!!!!!!!!!!!!!!!

Saturday, October 4, 2003 2:49 PM CDT (day 22 post-transplant)

Counts:
Thursday's---
WBC-5.12
RBC-3.45
HGB-10.3
SEG-42
BAND-17
LYMPH-4
MONO-19
META-11
MYELO-7
ANC-3.03
PLATELET-14

Friday's---
WBC-4.14
RBC-3.29
HGB-9.8
SEG-39
BAND-19
LYMPH-2
MONO-32
EOS-2
META-3
MYELO-3
ANC-2.42
PLATELET-43

Saturday's
WBC-3.35
RBC-3.42
HGB-10.2
SEG-37
BAND-19
LYMPH-3
MONO-33
META-6
MYELO-2
ANC-1.87
PLATELET-22

Everyone is probable wondering why his counts are going down instead of going up. Thursday they stopped his GCSF injections that was boosting his WBC. The outcome from his BMA was that there was to many cell to see what the marrow looked like. So they do not know if the marrow is producing the donors marrow or if it is Dustin's marrow. Besides they only give the injection long enough to see his ANC greater than 1.50 for three days then they stop it. I was told that his counts will go down but not all the way down to where he has nothing at all. They will be low and it will take awhile for them to recover.
There is something that has happened since I wrote last. Dustin is in complete isolation and can not leave his room. Anyone entering his room has to wear a blue isolation gown and gloves. This is due to a virus that he has. I think I told everyone about his loose stools and that they were not a frequent. Well late Wednesday night his loose stools started come a little more often. They sent a sample of it to the lab to check it out. By late Thursday DR. Myers told us that the sample had a little sign of a virus so they put him in isolation. So far it has not bothered him at all. As of today his loose stools have stopped but he is running a high fever again and still throwing up. Today he has had a high fever pretty much all day and is complaining of his head hurting. His doctors were a little concern about the sickness first thing in the morning and the pain he is having with his head. We have already had a CTscan done of his head and found nothing wrong. What a relief. There next option is that they are going to do spinal tap today to see if there is something going on in his spinal fluids. If this shows nothing than we can asume that its combo of the pain in his head making him sick or the sickness is making his head hurt along with the fever. So far nothing is growing in his blood cultures so we know that it is not a bacteria yet. You never know about these blood cultures, it could take several day before they see anything growing.
As of right now it looks like we will not be getting out of here unless everything is gone by this coming Friday. Need to let you go. By the way Dustin will have another BMA done sometime next week, will let everyone know the result as soon as I get them. Have a wonderful weekend.

Update:
Well I do not know how to even tell ya'll this. After Dustin's spinal tab was done, Dr Kuehnle came in to tell me that the fluid was not clear. Clear fluids mean that everything is OK. Well Dustin's wasn't. She had told me that if could be one of two things. 1. There could be an infection or 2. That his Leukemia was there. If it was his Leukemia that they would give him another dose of chemo and them send him home because there would be nothing else that could be done. I was not ready to hear something like that. I am not ready to have my son leave me. I do not know what I would do, except to enjoy what is left. I have to many things that I want to do with him,take him places and visit family. God you can not do this to us. He has not lived his life yet.
We did have the pathologist look at the fluid under a general microscope and what he could see that there was NO Leukemia cell. But this is not offical yet. We will know for sure tomorrow. I have been numb ever since. I just can not describe how it feel to have a doctor come in and tell you that you might be spending your child's last few day at home and that there is nothing else that can be done. So we have a 50/50 chance on either side and I would rather take the infection anyday.
Later his doctor came back in to let us know that they had call one of the pathologist specialist from home to come in and look at the fluid. He was not 100 percent sure but pretty close to it that it looked like infectous fighting cells and not leukemia. So that I had to give ya'll this kind of news, but I know that everyone would want to know. I keep praying and tell myself that everything is going to fine. Dustin is a fighter and has been through so much already and that he can get through this as well.

Wednesday, October 1, 2003 10:25 PM CDT (day 19 post-transplant)

The last two days have been wonderful. No fevers and still negative blood cultures.Dustin has also been getting out of his room a little more. His doctors are still decreasing his morphine which it is not going continuously like it was,but if he needs some all he has to do is press the button. We were told yesterday that we might be going home soon. Dustin has to be completely off his morphine, finish up his antibiotics and his meds that were changed from oral to IV needs to be changed back to oral and his antirejection med,Fluconazol,and Bactrim all has to be taken by mouth. Also he has to be eating alittle bit and drinking some fluids.
Dustin had his BMA done today do not have the results back yet. Should have something by Friday. His tummy seems a little more upset today than yesterday. Just as we walked into the OR for Dustin's procedure he threw up on the bed. So they had to give him Zofran anti nausea medicine. Also today I have notice that his bowl movements have increased and they are getting a little runny. Since the time that this was written he has had about six loose stools, tried to give him one of his meds that was changed back to oral which he threw up twice. At least we tried.It might take a little bit for him to take anything by mouth. I think he is scared that he might get sick so he gets himself all worked up.
The doctor on call was not really concerned about his loose stools and that they will not give him anything because if he happens to have an infection that they want Dustin to continue to have stools to let out the infection. His nurse did get a sample of his stool to see if anything might be growing. Hopefully nothing. I know Dustin heard Dan and I talking to Dr. Kuehnle about going home and I think that Dustin might be a little scared and it is bothering him and that all of this throwing up, upset stomach and the loose stool is a sign that he is nervous. But then again I could be wrong. I know when I get nervous and my anxioty level is up my stomach feels like I got knots and I have no problem going to the restroom. Dustin did not start this until after that talk.
Here are his counts for the last two days.
Tuesday-----
WBC-1.66
RBC-3.42
HBG-10.1
SEG-32
BAND-25
LYMPH-20
MONO-13
META-9
MYELO-1
ANC-.94
PLATELET-11
Wednesday's------
WBC-2.71
RBC-3.37
HBG-9.9
SEG-43
BAND-19
LYMPH-6
MONO-20
META-11
MYELO-1
ANC-1.68
PLATELET-33
Time to let everyone go for now. Keep up the prayers.

Monday, September 29, 2003 10:44 PM CDT (day 17 post-transplant)

Well it has been exciting the last two days. See every morning when I wake up I always ask for his blood counts to see if anything has changed and if his counts have started going up. Well yesterday Dustin counts did start to show signs of engrafting. This is what they are-
(These are the main areas where they look at)

WBC-.29
RBC-3.46
HGB-10.0
SEG-10
BAND-60
LYMPH-20
MONO-10
ANC-.20
TOTAL CELLS COUNTED-10
PLATELETS-13

With the WBC,RBC,HGB,ANC you need to add a zero at the end so .29 would be 290 3.46 would be 3460 you get the idea. I was so excited to know that he has finally started to engraft. To let everyone know, even though Dustin is starting to engraft he could loose the engraftment at anytime even if he is at 98 percent engraftment. So don't go getting your hopes up know we still have a long way to go. Dustin is not out of the woods yet. Let just continue praying that he will reach 100 percent.
Dustin continued to sleep most of the day yesterday and complained a little about his left shoulder hurting a little. I think it is from sleeping to much on that side. Also still no fevers and still having neg. blood cultures. That is always good news to me.
Today was much better. Here are his CBC-
WBC-.82
RBC-3.70
HGB-10.9
SEG-50
BAND-14
LYMPH-18
MONO-16
MYELO-2
ANC-.52
TOTAL CELLS COUNTED-50
PLATELETS-41
His platelets are higher today because he received platelets yesterday. Platelets are the last thing that will recover so it will be a very long time before that will happen. They say it could be up to a year or longer.Dustin did sleep much today. I have ask that they start to decease his morphine pump so that way we can wean Dustin off of it. Also no fevers today and his mouth is looking much better than it did a few day ago. Dustin will have a BMA done on Wednesday. His doctors want to see what his bone marrow looks like. I do hope that it look good and that we will be getting out of here real soon.
Well hope eveyone get a good night sleep, I thing I need to get in bed also. Love everyone and lets keep praying that he keeps his engraftment.

Saturday, September 27, 2003 10:30 AM CDT (day 15 post-transplant)

Just a quick update for yesterday. I think I told everyone that his new line was infected. If not well it is. Dustin is still running fevers, but are starting to go down a little bit. Dan and I did get him up out of bed yesterday for a little bit ,but mostly he just sleeps most of the day. His mouth looks terrible and the inside skin is peeling. I was told by one of the nurses that that is part of the heeling process. One of his doctors did tell me yesterday that this is pretty much the lowest post of the transplant as for the way Dustin is feeling.
As for his blood counts, nothing yet, lets hope for something in the next couple of days. I am going to wrap it up for know, everyone have a wonderful weekend.

Thursday, September 25, 2003 2:47 PM CDT (12 days post-transplant)

Sorry that it has been a few days since I last updated. Here is what beens going on. As I told you, Dustin was running a fever for a few days. His central line had something growing in it. And over the weekend his blood cultures continued to come back postive for this bacteria. on Monday when I returned to the hospital they decided to remove his centeral line since Dustin has several day of postive cultures. So Monday late afternoon Dustin went inot the OR to have his centeral line removed for the fourth time and have a PICC placed for the fourth time also. Usually the surgery only last about an hour. After about 2 hours and still Dustin was not in recovery yet, I knew that the surgeon must have been having some problems with the PICC line. Shortly afterwords one of the surgeons came out to let us know that they could not get the PICC line into his arms, that the only other thing to do was to put in another central line. Having the risk that this line will become infected too. Well I do not have to tell you what happened to his new line. Yes, his new line is infected with the same bacteria. Now this make the fifth centeral line and three PICC line that he has had since February, a total of 8 lines which 6 of them are from the end of July to present.
Dustin has been running more fevers the last few days. His doctors have called in the Infectious Disease Team for there assistance in his antibiotics. They have added a few new ones yesterday and so far we have at least one day of negative bllod cultures. Maybe this line will be saved and will not have to removed.
I know everyone is probably wondering why I quit putting his blood counts in the updates. Well since his transplant he counts have been unsteady. That means nothing bad is going on it just means that his marrow has not engrafted yet and should be showing some type of signs in the next week or so. It might take a little longer than normal just for the fact that Dustin has had so many round of chemo and that it has taken a toll on his bone marrow. Just as soon as I hear and see something from his labwork I will be sure to let everyone know that the engraftment is taking place.
Also Dustin is in need of platelets. His blood type is O postive and A postive. His nurse told me today that has for his platelet the blood bank will take both and for his actual blood type it is still O postive. Dustin get platelet just about everyday so I am asking everyone to please donate platelet in Dustin' accout at the Gulf Coast Blood Bank. I am not sure how many donors it take for one bag of platelets, but I do know that it take 8 donors for one bag of red bllod cell that Dustin get. If you have any question about donating blood or platelets please email at the address at the bottom if this page. Thanks everyone for the wonderful thought and prayers. Hopefully we will be leaving in the next couple of week to stay at the Ronald McDonald House.

Friday, September 19, 2003 10:33 PM CDT (day 7 post-transplant)

Now were do I begin for last night and today? Yesterday I had told ya'll that Dustin had been running a low grade fever of 99.5 most of the day. Well around 10:00 that night the PCA came in to check his temp and it was 101.9. His nurse called the doctor on call to let them know what was going on. She had to draw some blood cultures so that way they can see what might be growing. She also gave him some Tylenol for the fever. I was not a happy camper late last night. I think everyone will agree with me that Dustin has had his fair share of infections and that he does not need anymore. He has been doing so good, then BAM something like this has to happen. Then about midnight Dustin woke up to get sick and the PCA came in to check his temp again it was at 104.1. When I went to dump his stuff out of the bucket I noticed that there was blood in it. I had asked one of the nurses that night about the blood and they had said that it was coming from the sores that he has in his mouth and that he most likely has them in his stomach which would explain him getting sick so much. I also asked about his fever and that his nurse had given him some tylenol 2 hours earlier. This is what they said, Dustin's temp at 10;00 pm was not at the peak of the fever and that when his fever does reach that peak it will then start to go down. I'm sorry but I have never heard anything so off the wall like that before. After Dustin and I went back to bed it was maybe 10 to 15 minutes later that Dustin started swetting really bad and with the next 30minutes or so his fever was back down to 98.7.
For today Dustin pretty much slept all day. His doctors did come in to let me know that the blood cultures that were drawn late last night did come back postive for bacteria. We do not know yet what type of bacteria but do know what catagory,which tells the doctors what type of antibiotic to use. They did sound positive about him getting rid of it with the meds that he is on know. Dustin still ran some fevers and will until the antibiotics gets into his system.I did get to leave to go home today and enjoy the weekend with my family. Tomorrow is my mother birthday. I think I wrote in yesterday's entry that it was my fathers b-day. Anyway I had to sneek out of the room while Dustin was asleep. I hate to have to do it that way but if I don't then he throughs such a fit and it make me feel really bad and then I don't want to leave him with my mother n law crying. I know that I need my time away from him but it is so hard to leave him when I know that I am going home and he has to stay. Well hopefully in about 3 week we will be able to leave the hospital and stay at the Ronald McDonald House until it is safe enough to go home. Well it is getting late and I need to get some much needed sleep.Hope everyone has a wonderful weekend. Lots of love and prayers for all the sick children in the world. Good night everyone!!!!!!!!!!

Thursday, September 18, 2003 6:24 PM CDT (day 6 post-transplant)

Another day come and gone. Dustin has pretty much slept all day today. His mouth is really bothering him and they have had to increase his morphine a little bit more. The doctors also have change his Digxon (heart medicine) to IV instead of oral due to his mouth problem and him getting sick. As soon as all this goes away they will put him back on oral.Also Dustin temp is up just a little from his normal 96.9, it has been staying at 99.4, which we are all watching very closely. Dr. Shardy one of the many Oncology Doctors here at TCH said it is from his mouth sores. Let all get down on our knees and prayer that Dustin will get through all of this will no fevers. We have had our share of fevers and know we would like them to stay away.

Me and Sandy pretty much watch TV or play on the computer all day. The days seem to be getting longer and longer. We still have know idea how long we will be here. I will get to go home tomorrow and go to a 40th wedding anniversary. Happy 40TH Wedding Anniversary Linda and Gene Horak. Also my father's b-day is Saturday and my mother's is this coming Tuesday so we have a lot of celebrating to do.

I am having a little problem with something and would like some ideas. Here my problem. As I have mentioned Dustin's donor was a 34 year old male that was a perfect match. He sent Dustin a card and alittle toy. I have been trying to thing of something to send him from all of us to thank him and to let him know how much he is appreciated, but have not come up with anything this is were I need your help. Remember the donor can not know where we live (no city or state) and no names can be mentioned.With ya'll help I think we can come up with something spectacular for him.

Lot of Love,
Stacie

Wednesday, September 17, 2003 7:27 PM CDT (day 5 post-transplant)

Nothing has really changed since yesterday. His mouth is a little sore from the mouth sores which is from the chemo. We have put him on morphine for the pain that it can cause. Dustin is on such a low dose that it does not make him sleepy. He is moving around a little bit more and playing games on the computer and going to the playroom. No sign of his counts going up yet, that is why I have not posted anything from his blood counts like I have been. He is still getting blood and platelet transfusions as his body is not producing any of that and the life span of the blood and platelets are not that long. Dustin is still recieving O postive blood products and the blood bank is watching his blood closely to determine when the switch will take place from O postive to A postive. I do not know how all that is done but somehow Dustin blood type will change. Let's keep up the prayers and hope soon that his counts will start to show engraftment.

Tuesday, September 16, 2003 11:30 AM CDT (day 4 post transplant)

So far everything is going great. Dustin did wonderful last Friday. When he was getting his transplant,which is just like a blood transfusion, you could see the actual cells going down the tubing and into Dustin. We did find out the next day that it was not the original donor that we were told about. This donor was a 34 year old male and still is an idental match to Dustin. Dustin has had no fevers, no reactions and no complications during the procedure. Today he is a little down but that is about the time that the doctors had predicted. And that is due to all the chemo and the radiation. So for the next week or so he will feel a little tired and fussy and have sores in his mouth and a rash on his bottom. We are all prepared for it so it should all go smoothly. Now it is just a wait and see game as to whether the engraftment takes place.Will update more later today.

Thursday, September 11, 2003 8:27 PM CDT -1 day pre-transplant

WBC .04
RBC 3.05
HGB 8.5
LYMPH 100
ANC 0
PLATELET 13
Today was Dustin last 2 radiation treatments at MDAnderson.He has done wonderful and he got to ring the bell that they have when you have finished your radiation. So he got to ring the bell three times. Dustin is still doing great and his doctors still do not have anything to say. We did find out that the stem cell harvest will be done at Methodist at 2:00 pm tomorrow and Dustin will receive them at 6:00pm. Tomorrow is going to be a very big day for all of us. We just hope that this will be the one that heals him and we will not have to go through this anymore. Well it's getting late for me because since I had to get up early and I'm not much of a morning person. Will let everyone know how it went tomorrow night. Your calls are welcome if you would like to check up on him duringhis transplant. The number here to his room is 832-826-0842.Thanks everyone for the prayers. Also his blood will change from O to A it anybody would like to have a blood drive again. We will have a lot of blood and platelet transfusions, more than he had before.

Love,
Stacie

Wednesday, September 10, 2003 8:47 PM CDT

Sept.6,2003 -6 day pre-transplant

WBC .36
RBC 3.28
HGB 9.3
SEG 44
BAND 28
LYMPH 16
MONO 4
BLAST 8
ANC .26
PLATELET 8
Dustin has been doing great on his chemo,no more fevers and a little bit of am upset stomach. He has been playing a little bit in the playroom today. Nothing major has happen so I really have nothing to tell except that he is doing great.

Love,
Stacie


Sept.7,2003 -5 day pre-transplant
WBC .16
RBC 3.30
HGB 9.2
SEG 61
BAND 13
LYMPH 13
BLAST 13
ANC .12
PLATELET 85
Today was his last day chemo and that was at 2:00 in the morning. Tomorrow he will start him radiation which is total body and that will be for four day twice a day,once in the morning and then again in the evening. Still no fevers today which is wonderful. That's what we want. We will have to get up at five and the paramedic will be here at 5:30 to take us to MDAnderson for his treatment. We are a little scared because we have no idea what to expect.
Dustin played alot today in the playroom and road on his bike some and drove his Hummer around.I think he his doing great with his chemo even though they are high doses.

Sept.8,2003 -4 day pre-transplant
I do not have his CBC for today!
Today was the most awful day for our first dose of radiation. When we got there they did not have his chart and they could not find it. Dustin was laying on the stretcher in the hallway with his mask on that is not 100ool proof, and just down the hall they were doing construction and that means that there is all kind of stuff hiding in the walls.We had sat in the hallway for 2 hrs before Dustin was able to go to the radiation room. I had never been so upset in my life. Those nurses got an ear full by the time I was done. There were so many people walking up and down that hall and we were right by an elevator as well. The treatment in the afternoon went so smoothly that they ended up having to wait for us.
Anyway Dustin did very well during and after his treatments. He did sleep a little more than he normally did all due to the sedation that he gets. Dustin only has three more days of treatment.

Sept.9,2003 -3days pre-transplant
WBC .03
RBC 3.14
HGB 8.7
SEG 100
ANC .03
PLATELET 39
Happy Birthday Charlotte!!!!!!!!!!
I was not hear most of the day due to a meeting at Danielle's school. Dan did tell me that he had a great morning. That he was all smiles and laughing. The afternoon treatment to a little longer than yesterday due to, they had to do a lung block. That means that they put sheilds over his lungs so that way they do not receive any more radiation. Poor Dustin has marks all over his tummy and back.He still did wonderful, we are so very proud of him.His nurse did tell me that he will not actually feel the side effects of the radiation until next week.

Sept.10,2003 -2 days pre-transplant
WBC .02
RBC 3.07
HGB 8.7
LYMPH 100( this percentage here with this type of white blood cell means that he has no immunesystem)
ANC 0
PLATELET 24
Today on his labs that show his blood counts, they only counted 1 cell. Can you believe that only 1 cell!Dustin had another great day again. The doctors came in and really did not have anything to say because he is doing so well. Let's just hope that this keeps going. Tomorrow will be his last treatment. This Friday will be his transplant day. I do not know when that will take place. It will determine where the stem cells are coming from. Will let everyone know when I get the news. Well I better let you go we have to get up early again and I'm not a morning person at all.

Thank You,
Stacie

Thursday, September 4, 2003 8:12 PM CDT -8 day pre-transplant

We have officially started our pre-transplant procedures.Today was -8 day pre-transplant and consisted of an oral rinse that has to be done 2x day, mouthwash that has to be done every hour as needed, eye drops every hour for 5 days(24 hrs a day meaning that I will not get any sleep at all). He had his first of four doses of ARA-C today at 2:00 pm, he will have his #2 tomorrow. Dustin has had a really good day today. He has spent most of his time out of his room, which is wonderful. No side effects yet and will let everyone know whether he gets them or not. We are so glad that we have finally got to this point. We have waited almost a month to get started and can not believe we have started. Also he has been eating a little today too. You know, it's pretty funny when I think about and how crazy it must be to other people to be so excited to see your child eating, whether it is just a few little bites. Parents that have a child with cancer do funny things and get so excited over the littlest things. Like eating or walking or even when they are little to see them playing. That is a big mile stone for us. That is telling us that the child is doing great. I had someone the other day from a church that held Dustin's benefit show bring by some music CDs so that way at night when I go to bed I can listen to some music to relax and guess who took over the CD player and the head phones? You guessed it Dustin. So at night when he goes to bed he is the one listening to music to relax.
Yesterday Dustin decided that he was going to do absolutely nothing all day. He would not even get dress. He layed in bed all day and watched his Monster Truck movie. Well it is almost 9:00 and I still need to get Dustin into the tub for his daily bath.Think you all for your thoughts and prayers.

Here are Dustin's CBC
WBC 1.21
RBC 3.08
HGB 8.7
PLATELET 38
ANC 0.05
SEG 3
BAND 1
LYMPH 22
MONO 55
BLAST 19
Love,
Stacie



Sept.5,2003 -7day pre-transplant

This morning Dustin woke up about 5:00 am with a fever of 101.0 and con't. to have fevers throughout the day. Dr. Kuenhle had told us that he was right on schedule for the fever. This is a side effect of the chemo. Dustin also had another CT scan of his upper chest and lower abdomin. Dustin had a pretty good day. Dustin's CBC for today is as follow:
WBC .50
RBC 2.69
HGB 7.6
ANC 0.04
PLATELET 23
SEG 8
LYMPH 52
MONO 16
BLAST 24

Love,
Stacie

Tuesday, September 2, 2003 10:09 PM CDT

Dustin had a wonderful weekend with his Grandma and Grandpa. Dustin and grandpa played all weekend long.After they removed his central line his fevers had stopped. He even felt better too. Yesterday he met his new doctors, which he has had one of them already, so she know all about him. Today the TPN nurse came in to change his PICC line dressing,at the same time a lab tech. and the respiratory therapist were all here too. Somebody was not a happy camper after they left. I had given him a bath early this afternoon and noticed that his arm where the PICC line was had a red line going all the way up his arm and that his arm around his shoulder was a little puffy. They called the surgeon in to look at it and decided that it would be best to pull it and put in his centeral line. They did not want to run the risk of any infection. Also Dr. Kuenhle came in to see him today and was every excited about his progress and that he has had no fevers. The plan is to start his pre-transplant procedures on Thursday as long as nothing goes wrong. Let's all knock on some wood. So later this afternoon the OR came up to get Dustin for his procedure. That is about all that has happened today. We are just praying that we will get to start on Thursday. Thanks for all your thoughts and prayers.

Love,
Stacie

Sunday, August 31, 2003 7:19 PM CDT

Were doI begin, alot has happened in the past week and I apologize for not keeping everyone updated everyday. Dustin was still running some fevers this week, though not as often and not has high as it has been. He is still been in alot of pain so he is know back on Morphine every 4 hours as needed. His oxygen level is getting better, there are day were he needs it a little more. The low oxygen level he is experencing is due to pneumonia. He only has a few spots on his lungs and the respitory theropist come in every six hours and gives him a breathing treatment. He does not like them but it is helping. He starts caughing and pretty soon he throwsup a bunch of moucus.
Since his blood cultures were coming back neg. for any bacteria and he was still running fevers. His doctors started looking in his urine,his stools and in his nose for any bacteria,virus,or any parasite that could be found but found nothing. They called in the Infectous Disease Team again for some assistance. He had his MRI done of his heart and we do not have the result back yet on that. Then on Friday, Dustin was due for his dressing change on his central line. When the TPN nurse pulled off the old dressing we found something there that we did not know was there. He had a very bad site infection and his doctor was called down to see it. That was when we realize that this was what was causing his fevers. The surgeon were also called. We had the ID Team, his doctors and the surgeon in his room on and off to look at his infected site. His doctors did not want the central line removed since we just received it two weeks ago and had been without for a while. But because the ID Team and the surgeon both agreed that it needed to be removed, well I should not have to tell you what happened. Dustin was in the OR about 6:30 Friday night and did not get back to his room until about 11:00pm. We were back in the OR the next morning for a PICC line placement. So as of right know we still do not know when the pre-transplant procedures will begin. He will have another BMA done early this next week to see what his blast percentage is at and if he will need another round of chemo to keep them down. I hate to hear that Dusin might have to have another round of chemo before he even start his pre-transplant stuff. He has been through so much already and I do not know what this will do to his body. But if it needs to be done then it needs to be done.
I hope everyone has a wonderful holiday. I am spending a few days at home myself. Talk to ya'll later.
Keep up the prayers guys!!!!!!!!!!!!!!!

Love,
Stacie

Monday, August 25, 2003 8:48 PM CDT

Today was an okay day. Ran a fever pretty much on and off today. Complained of his left hip hurting and had an upset stomach. The only meds that he could tollerate was his tylenol which was good because of his fevers and his heart medicine which that one only comes orally,so it takes me almost two hours to give it to him without him getting sick.We did get him out of bed today and into the playroom. He did not play but watched daddy play. I'll update more later.


Love,
Stacie

Friday, August 22, 2003 11:41 PM CDT

Today was spent with daddy. I had to leave late last night from the hospital because my sinuses/allergies were not getting any better and I was running a low grade fever and did not need to be there around him. Dustin did not like me leaving one bit. Cried so hard and I felt terrible but knew I was doing the right thing. I do have to admit that I slept great and I needed that.I can not even remember the last time I had a good nights sleep.Today though Dan stayed with him. Even though my mother-n-law is there with me for moral support,me or Dan always make sure that one of is there as much as possible. Daddy had said that he has been doing great. Dustin ran a little fever early this afternoon of 100.2 which was great. Had an xray done of his chest to check for fluid. Do not have the results yet. Daddy had said that on their way back to their room on the BMT floor Dustin had noticed the playroom and wanted to see it. So daddy and Dude explored the floor, went to the playroom, explored the exercise room and had to try every thing out, went to the family room and walked the halls. On the BMTU floor there is only 15 rooms and is a little darker and a lot quieter. The nurses are very quiet when they enter the rooms. You do not have all the hussle and bussle like the 9th floor does.Also you do not see alot of the patients out of their rooms. Most are resricted to their rooms. Dustin did run a little fever again late this afternoon of 102 again and the nurses have been having problems with his yellow line. We still do not know what type of infection he has, but we do know that it is not the same infection that he had in his ear and in his blood. We are all glad about that because that infection was so hard to get rid of. Other than that Dustin has had a great day,he even ate a little too. I will be returning to the hospital late tomorrow afternoon. I slept most of the day after returning from the doctor. I want to spend a little time with Dannie,help her with her homework that is due on Monday. Thanks for all the prayers and the lovely words of support.I know in my heart that everything is going to be okay and that we will be home before you know it. Well I need to get to bed. Love everyone.

Thanks,
Stacie

Thursday, August 21, 2003 9:01 AM CDT

Yesterday I was told by his doctor that it was going to be a relaxing day with nothing going on. He lied!!!!! I woke up with bad headache, then the cardiologist showed up to tell me what they saw and didn't see on his echo. They told me that he has what is call Mildly Depressed Heart Function. What is that? The muscles of his heart are not as strong as they used to be to pump his blood through his body. What are they going to do about it? Nothing can be done to fix the problem,but they are giving him a medicinecall Digoxin to help the heart pump the blood. Then we were told that he will have an MRI of his heart just to get a better look at it. That would be scheduled for tomorrow which is know today. And finally they told us that we would be moving down to the 8th floor. Let me tell you, my headache was gone in know time.

Was just told by the doctor that his transplant has been delayed for a week due to central line infection again. Will tell more later when we come back from his MRI.

Love,
Stacie

Thursday Aug.21st-
We are back in our room. They could not do his MRI because he was running such a high fever(104.1)and his heart beat rate was just too high for them to monitor his heart. So we were sent back to his room. The reason Dustin transplant has been delayed again is yesterday morning about 5:30 he started running a fever of 102.7, did blood cultures and gave him some tylenol. Then he ran fevers pretty much all day yesterday. I was told sometime early this morning that both line of his centeral lines came back postive for an infection.So that is why we have a delay. The delay should only be a week but we will see.

Here are the chemo drug that he will be on when we do finally start his transplant and there side effect. Warning----He might get some,get them all or get nothing. It will just depend on how Dustin's body is going take them.

He will have a Stem Cell (Peripheral blood)transplant instead of bone marrow.Stem Cells are the "mother" cell that are found in the bone marrow(the spongy tissue inside bones), although some are also found in the blood stream(peripheral blood).Dustin will be given a drug called Ara-C, which he has had several times in the past, in high doses every 12 hours by vein for the first 3 days. Then, a drug called cyclophosphamide, which does not do well with the heart, will be given in high doses by vein once a day for two days.A drug called MESNA will be given with cyclophosphamide. MESNA is used to decrease the side effects caused by cyclophosphamide.Dustine will also receive an antibody called Campath to help destroy his immune system so that there is less host resistance to the growth of the donor marrow. Radiation treatment will be given to the entire body. This will be done 2 times a day for 4 days. The day after the radiation treatment is completed he well receive the healthy stem cells by vein. Once in the bloodstream, these stem cells will go to the bone marrow and should begin to grow. There are ways of preventing GVHD(GRAFT VERUS HOST DISEASE), one he will receive a medicine called FK506 as well as low dose methotrexate. Four doses of low dose methotrexate will be given intravenously. The FK506 will be given intravenously initially and later by mouth.

SIDE EFFECTS-----
#=rare side effects

Agent
Cyclophosphamide- Upset stomach and vomiting,mouth sores and stomach ulcers,fluid retention with seizures,diarrhea,bladder problems that cause pain when urinating or cause blood in the urine.(may be prevented by giveing extra amounts of fluids by vein or by a drug called MESNA),hair loss,skin rashes,low blood counts with higher risk for infection,bleeding and anemia,sterility,#heart damage(He is at a bigger risk for this due to his heart problem already),#second cancers(very rare),#lung damage,#blurred vision.

Agent
Ara-C- Upset stomach and vomiting,low blood counts and higher risk for infection,bleeding and anemia,fever,hair loss,red and itchy eyes,skin rashe,muscle aches,seizures,mouth sores and stomach ulcers,diarrhea,sterility,#liver damage,#bloating#sever sleepiness,movement problems,mood or behavior changes,#damage to the veins.
(This explain alot of what Dustin has already. He had a round of this July 18 con't 24 hours for 5 days and then again Aug 7 2x a day for 5 days.He has the movement problem,mood or behaivor changed and the damage to the veins.)

Agent
FK506- High blood pressure,kidney problems,low magnesium,tremors,movement problems,confusion,#seizure,#burning of the hands and feet,#allergic reactions,#nausea/vomiting

Agent
Campath- Fever and chills,allergic reactions,breathing problems,low blood counts,skin rash,#kidney problems,#chest pain,#upset stomach and vomiting

Agent
MESNA- #Abdominal discomfort,#diarrhea

Agent
Methotrexate- low blood counts,nausea,vomiting,mouth sores,liver damage,itching,skin rashes,changes of color of skin,hair loss,increased sensitivity to sunlight.

Radiation-Early Reactions---redness and/or brown staining of the skin,upset stomach and vomiting,low blood counts,hair loss,reduced and sticky saliva,swelling of the salivary glands,sore mouth and throat,difficulty swallowing,permanent destruction of the bone marrow leading to infection,bleeding,and possible death,inflammation of the lung with fever,dry cough and difficulty breathing with possible fatal lung failure,danmage to liver with possible fatal liver failure;LATE REACTIONS--Stunted growth,lung scarring causing shortness of breath,infection, and fata lung failure,cataract formation in the eyes,possible loss of vision,testiculer damage in males causing sterility,increased risk of second cancer,possoble learning difficulties.

This is a lot to have to asorb at one time. We just hope that the side effects that he will get will be mild. The doctors just have to really watch his heart,lungs and kidneys. These are the organs that have been put under a lot of stress and they are showing it know. His lungs, just the right side show a little gunk(that's what the doctor calls it) behind hid right lung. We just have to make sure that he sit up alot, have his sleep on his left side and the respitory therapist comes in and give him a breathing every 6 hours and beat on the right side of his back to loosen up that gunk. I think that I have given ya'll enough information for your brains to asorb. Besides all that has been going on Dustin really has been doing great. I myself still having problems with my sinuses. My overall attitude is great. I was a little overwhelmed yesterday by all the news that given to us. We know that there have been children on the floor in worse condition that Dustin is in have gone through there transplant just fine. We are just hoping for the best and the each child is different and can react differently to things. I still can laugh about things and joke about things so I guess I'm doing okay.I know I have to. It was hard to leave all his nurses and Doctors yesterday. When you have been in the hospital for a while it start to feel like home and you get close to the ones that take care of your child and to have to leave and meet all new faces you just kind of wonder if they will be as good as the ones we had to leave behind. Thanks to all the nurses on the 9th floor West Tower Day Nurses Katie,Tina,Erika,Laida,Janet,Stephanie,Dustin's favorit nurse who would come running down the halls whenever she heard him crying to rescue him from someone,Joan,Erin,Carol,Denise,Beth,
Rachell and the many others that have taken care of my sweet angel.
Night Nurses--Thank you also for being so patient and quiet during the night and not turning on those bright lights,thank you-Debbie,our first night nurse,Debra our first day nurse for only a few minutes,Vida,Stella,Toya,Annabell,Angel who swith from day to night,Angela,and the many other have we had and just can not remember their names.
And finally-
To all the wonderful and caring doctors thank you for being understanding about our pain,the numerous questions that were asked,Dustin hiding under his blankets to make you go away.Thanks to all the residents that we have had and the one that has been so patient with us Erin. Thank you so much. To Dr.Meyers,Dr.Blaney,Dr.Shardy,Dr.Wang,Dr.Lee-Kim,Dr.Heym,Dr.Mehta,Dr.McClain,Dr.DeyersPNP Diane Bartley at the Clinic Center and the many other doctors we have seen.
Ya'll will all be missed royally.

Love,
Dan,Stacie and Dustin(Dude)Little

Tuesday, August 19, 2003 7:51 PM CDT

Wednesday Aug. 13th-

Dustin had his surgery on his sinuses today. Everything went well. Dr. Freedman who performed the procedure had said that she drained alot of fluid from his sinuses and looked at the right and left ear to get a closer look at them. The left ear showed a little whole where the tube was and his right ear, the ear drum was almost gone. Dr. Freedman was not concerned at all about it because there was no nerve damage. She also had said that in time the ear drum should heal on its own. That the ENT team will check it through out his treatment. Also, there was only mild hearing loss in that ear.

We also have good news. NO MORE FEVERS!!!!!!

Thursday Aug. 14th-

Well he was supposed to have a CT Scan done today,but they(the dumb jerks)would not perform the Scan because of respritory problems and was sent back to his room. When the resident checked him out when he got back, she found nothing. Ct department had said that his heart rate and his breathing was to erractic. That was due to his crying. Hello, people can't you see that he is only 3 and a little scared. Sorry for the errupt rudeness but some people just do not think. The rest of the day went great. Met Danielle's school teacher Wed. night and I think she is wonderful and very understanding.

Friday Aug. 15th-

Happy Birthday Danielle, you are 8 years old today. We had our surgery today and let me tell about the confusion we had. First, on Thursday one of the resident surgeon had stopped by Dustin's room to discuss the procedure. He told me that Dustin would be put down as an add on(which means we could be waiting anywhere from 7:00 am till after midnight or even the next day). I had explained to him that I knew what there add ons were like. I had also told him that he has been NPO(nothing by mouth) since Wed. I had explained that his PICC line needed to be removed tomorrow for the fact that he was getting a site infection in the area where the tube was inserted. The surgeon had asked me when we were going to transplant and I told him Thursday. That was when he decided that if the surgery did not get done on Fri. that it would be okay on Monday. I explained that if it was not done on Fri. that his PICC line would still have to be removed and another one put in. In his own words he told me "What has to be done has to be done". Then I talked to Dustin's doctors and they said the PICC line would come out Friday and the central line would go in on Friday. Friday was a very busy day for all of us. First thing in the morning we went down for blood work and came right back without the blood work because they wanted to put us in a waiting room with a bunch of kids and other people with Dustin having no immune system. I told them we could not and would not stay in this room so we came right back to the his room and they did the blood work right here which didn't make much sense why they did that when it could have been done here all along. Then they called us down for and Echocardiogram as soon as we got there we came right back up it was canceled. Then we went down again later for the Echo. About 5:30 we went down for his marrow asperation, and then they were taking out his Picc line and putting in his central line. It was about 10:00 before we got back to Dustin's room. We were beginning to worry because it was taking so long. It usually takes about 45 minutes and it had been well over an hour and a half. They had a problem finding a vein to use for his central line. He has many little bruises where they tried they said this is because he is not eating and it affects the veins makes them very small and they are ready small.

Saturday August 16th

Saturday was not eventful but Dustin is feeling much better and doing more like riding his bike a little more each day. His arm wear they took out his Picc line is pretty sore because he has a site infection there. His pelvic bone is pretty sore because they did the bone asperation there so he is limping and babying his arm. He is gaining weight but still not eating. I would like to thank the Culliver's for their wonderful visit. I greatly needed you guys.

Sunday August 17th

Sunday was a fun day for Dustin he had a lot of company. His Memaw and PaPa came up to visit and brought Danielle. He was so happy to see them. PaPa brought him a new remote control Hummer and some new monstor trucks. Later his Aunt Charlotte and Lexi came also and then his grandpa & grandma Little. Danielle brought her remote control car also and they were racing them down the halls. He had a blast. It was rough on him when they all left especially Danielle he didn't want her to leave. Thank you Andrew Culliver for the wonderful gift you gave Dustin.

Monday August 18th-

Today was an OK day. We didn't have anything scheduled and we all just layed around. I took Danielle to school today and forgot her medicine, so I had to go all the way back home to get her medicine and then go all the way back to her school and give it to her. I can not believe she is in second grade already. How time does fly. Dustin did have some visitors today, Walter and Camile Hulsey. They are very old freinds of the family. I grew up with their youngest son. Thank you Walter and Camile for the wonderful visit.

Today August 19th-

Only 2 more day before we go to the 8th floor for the transplant. We had another Echo done this morning and our CT Scan that we have been trying to get done. Nothing else has happen and he has been in a great mood. Me on the other hand have felt a little misirble. I do not know whether it sinuses or my allergies. What ever it is it needs to go away. Dr. Kuendle dropped off a packet for me and Dan to read about the drugs that Dustin will receive on Thursday. I will let you know tomorrow what they are and what the side effects are. He will begin his chemo on Thurs. and go till Sunday. Then on Monday he will start his TBI and go through Thurs. On Fri Aug. 29 will be his transplant day. I will note starting this Thurs. has -8 day chemo, -7 day chemo and so on until that Fri. Aug 29 will be day 0. Then it begins day 1 post transplant and so on. Need to let ya'll go. Keep up the prayers.

Love,
The Little Family

Tuesday, August 12, 2003 8:22 PM CDT

Everything is starting to look good. His blood cultures are still neg., had no fevers over the weekend and just one last night of 101 but nothing since. His ear is still draining but that is expected. His grandpa was here this weekend and the nurses told him that he could not leave because he had Dustin laughing so much and that was the most that the nurses had seen from him. Way to GO GRANDPA!!!!!! Danielle had a wonderful time at her aunt Sandy's for her birthday. Actually, we all enjoyed some much needed fun in the pool.

Yesterday Dustin had another CT Scan of his sinuses. Dr. Evans the ENT doc said that they will proceed with the surgery. So tomorrow they will go in and drain his sinuses, flush them out, make a bigger opening in his ear for the drainage and might possible open his sinus passage a little bit more. On Thursday, he will have another CT Scan done but this time on his internal organs, only because on of the antibiotic that they put him on last Thursday is an antifungal and that was when his fevers stopped. So they think that he had a fungal infection and what to see if they can see anything.

Also, on Friday he will go into the OR and have his central line put back in. Then sometime next week we will be moved down stairs. If any of ya'll would like to call us at the hospital our number is 832-826-0911. After we move down stairs then the number will change and I will put the new number in. Love ya'll bunches!!!!!!!!!!!!!!

Love and Prayers,
Stacie

Saturday, August 9, 2003 10:18 AM CDT

On Monday Dustin had his consultation with the MD Anderson Radioloy Center. He was doing good with his fevers and his blood cultures are finaly neg. Nothing is growing anymore. He is still having some ear drainage but the pain is gone. We had gotten some bad news on Wednesday. His doctors had said he relapsed again with 55% blast. So Dustin will have to have another round of chemo, this time a much higher dose. He is not doing so good at times. Between the 4 antibotics, the 2 chemo drugs that he gets, and him not eating it has taken a toll on his energy level and his strength. The doctors did finally put in another PICC line so that they can start him on his chemo and start him on some nutrition through his IV. After this round of chemo they will wait until his counts start to drop then send him down to the BMT floor. There they will give him four days of TBI (total body irradiation)and another four day of chemo. I can not even begin to know what this is going to do to his body. The doctors had said that he is going to have to walk a straight line from know until his transplant and then 3 weeks after. So we do not want any type of infections at all. Also next week he will have another CT scan done of his head to check his sinuses and what they see will determin whether they need to drain his sinuses. His fevers we thought were starting to go away until late Thursday night when he spiked another fever of almost 102. This as taken so much out of me and Dan that we do not know what to do anymore except pray that he will get through this. We are having Danielle's birthday this Sunday at my sister's house. I can not believe that she is turning 8. How time flies. Just keep up with the prayers, that is what we really need right know.

Love,
Dan and Stacie

ps Happy Birthday Dannie! Mommy and Daddy love you very much.

Tuesday, August 5, 2003 8:18 PM CDT

Well family and friends, here is what's going on. From July 15-23;Dustin was in the hospital for his final round of chemo. The day we were going to be discharged, Dustin woke up with an ear ache. We stayed the whole day just so that his doctors could watch him. It was around 4:00 pm when his doctors decided to let us go home since he was not running any fevers and his ear seemed to be find except for the pain. Prescribed his some ear drops and then we were on our way home. He con't. to be fussy all night long. The very next day nothing had changed still fussy and no fevers. After several hours of him crying I called one of the leukemia doctors to ask what I can do. They let me take Dustin to see his normal doctor here in Tomball.

After the doctor had looked at Dustin and reported that he did have and ear infection and a fever of 101, I call the leukemia doctor back and informed then what the doctor had said. Well after that call we were headed back to the ER. On Friday his doctor had told us that he also had some type of infection growing in his central line. So for that last week and 1/2 Dustin has had his central lines removed, a PICC line insterted in his right arm, con't. fevers that do not go away, ruptured ear drum, and sinutitis. He has gone to the ENT clinic almost every other day to have the fluid in his ear stucked out, numerous x-ray to check his lungs because of his terrible cough and a CT scan of his head to look for any masses behind his ear.

He has not eaten for almost 2wks and not once has gotten out of his bed. It has been getting better the last 2 days. his fevers are not as often and we have cut him done on the amount of morphine he is taking. We did have the Infectous Disease Team come by today to check up on him and that they will keep an eye on his progress. Due to all of this, it has delayed his transplant for a few days just until his infections are clear.

Love ya'll
Stacie

Wednesday, July 30, 2003 5:17 PM CDT

Sorry that it has been a long time since our last update. We are back in the hospital for an ear infection and a central line infection. Today Dustin will have his central lines removed and a temperary line put in. We will not get to go to translant until his infections are clear. I am sorry that this update is so short. My mind is just not into this today. I have so many things going through my mind lately that I can not think straight right know. Will write more when I know that things are getting better.

Love,
Stacie

Monday, July 21, 2003 5:18 PM CDT

Stacie just called and Dustin has been through a full day of testing. All organs functions are normal. Just alittle hearing loss in one ear. He is doing fine so far on this new chemo regimen. She was told today that Dustin will be Admitted to the 8th floor (transplant floor) on Aug. 7th/8th if no problems arise after his chemo. Once Dustin is admitted to the 8th floor, he will undergo 4 days of chemo then 4 days of radiation to prepare for the transplant.
After the transplant has taken place it will take 3 weeks for the new bone marrow to take effect and start producing new blood cells. We are looking at Dustin being in isolation for 4-6 weeks in the hospital. Dustin will the be admitted to the Ronald Mc Donald House to continue waiting for his new cells to produce enough immunity (500) before being able to go home. The stay at the Ronald Mc Donald House is not covered by insurance and runs between $15-$17 a day. If you would like to help support his stay please let us know, we would appreciate it.

As for the rest of the family we are all doing well. It is just hard to believe that it has already been 6 months since his diagnosis. And I can not say enough about my sister and how well she is taking this. Stacie I know you are going to read this, I just want to say, you are unbelievable! Things are a wreck for you right now and you are calm and in control. The things you have to do, have done and will have to do in the future amazes me. You are a very strong and loving person, and I admire you for that. I Love You and it grows everyday with my thoughts of you and Dustin.

Sandy

Sunday, July 20, 2003 10:58 AM CDT

Well I found a computer that has internet here at the hospital. Alot has happened since I last updated. We had an office visit on Monday and his blood counts did not look right because he needed red blood cells. The week before his counts looked like they were on their way up. His Dr. decided to schedule him another visit on Wed. just for counts and one on Fri. with a possiblity of admission and they also schedule him another BMA on FRi.

On Tues. I had to go to the doctor because I woke up with my left hand a little numb. Then when I got home Dustin was running a fever and off to the hospital we went. He did not have any infections so they are thinking it is coming from his cancer. They also were a little concerned with his blood smear because it was showing 27% blast and they thought he might have relapsed again. His BMA was moved up to Wed. and the results from that showed only 10% blast.

The transplants doctors and Dr. Deyers decided to move his transplant date up. It was going to be anywhere from 4 to 6 weeks after he has his next round. Know it is going to be in 3 weeks from this past Thurs. They have started his final round of chemo on Fri. He his getting a con't 24 hour for five days of ARA-C, which he has had before but not con't. He is also getting 2CDA which he has also had before,but never in this combination. Dr. Deyers got this protocol from ST. JUDE'S. I will try to write more later.

Love Everyone,
Stacie

Friday, July 11, 2003 1:51 PM CDT

Well we have completed another week at being home which was great. Dustin's clinic visit went great on Wednesday, counts are still not coming up like the doctors had hope but are showing signs of something because they are not dropping like they use too. We had to go back yesterday for platelet transfusion and a ct scan on his head. Do not worry, Dustin had hit his head on the corner of the kitchen counter and the bruise was maybe the size of a dime but his nurse practioner wanted it checked out. Everything was fine no bleeding. We got lucky today we didn't have to go anywhere today. We have been at the clinic three times this week and I am get a little tired of the place. We do have to go back on Monday for the third time to see if he is ready to be admitted. You know what they say third times a charm. So hopefully he will be ready. I am wanting to get this round over with so that we can goet on with the BMT. It has been so nice to be home. I have been painting the children's room and I think that I am doing a okay job since I have never painted before. On one wall I painted it a dark royal blue (the color is pawprint blue) it is a nickelion color and the other three wall are a light blue. I have decided to that the theme is going to be country red, white, and blue. That will go good with either boy or girl. Danielle loves the idea. Please sign the guest book so that way I know that this site is being read. I have no other way of knowing if anybody views the site. You do not have to write anything just sign your name.

Love ya'll,
Stacie

Tuesday, July 8, 2003 4:35 PM CDT

I hope everyone had a wonderful 4th of July. Dustin and Danielle just loved the fireworks. We did not get to go to the car show that we had liked to have gone to due to the rain. But hey, we still enjoyed ourselves. Well we had an appt yesterday to see if his blood count were up enough to be admitted for his fifth round and they were not. He still has a little longer to go. We go back tomorrow just to get his counts again to see if they are go up, then if they are; he then will be admitted either this Friday or Monday. I hope it will be Monday so that way he is home for the weekend. Also his nurse practioner had call today and let us know that everything is going according as planned with the two donors that had their appts. While Dustin is in the hospital this next round me and Dan will meet with the Bone Marrow Transplant coordinator and one of the BMT physicians to answer any questions we might have and to start some of the pre-BMT test that have to be done.

Dr. Deyers is looking at about 4 to 6 weeks after his fifth round. It take that long for his body to recover and his bone marrow to start working again. That means that his count have to be up before he is admitted to the 8th floor.

Dustin has been doing great and is loving it at home. He did not want to go back yesterday because he thought he was going to the hospital. Brittney had come along with him to keep him company. And for once we were only there for 3 hours instead of 8 or more.

Thursday, July 3, 2003 5:19 PM CDT

Well the result from his biopsy is back and it looks great. We still do not know anymore on the two donors that already had there appt. We go back to the clinic on Monday and if his count are up then he will be admitted. Danielle is home finally, man I missed her and her wildness. I almost forgot how hyper she can get. Luckly she has meds for that or I would be in a nut house if not. I hope every one has a great Fourth Of July weekend. I know I will because I will be home celebrating instead of looking through a window at the hospital.

Love,
Stacie

Monday, June 30, 2003 6:07 PM CDT

Dustin's appt. went great. Dr. Deyers was very pleased with the out come of is bone marrow aspiration. Even though his blood counts this morning showed 5% blast which is the cancer cell; his aspiration only showed immature cells and that was a big plus for us. We also get to stay home for one more week because his platelet count was only at 43 and it need to be at 75 before they can do another round of chemo. This is good because we have a car show on July 4th at a church of 2920 and KING KRUNCH is going to be there so he is really excited.

I want to thank those that have visited Dustin's guest book. I may not add any new info but I do check his guest book daily. Lets keep the prayers coming and hope for a speedy recovery.

Love Ya'll,
Stacie and Dan

Sunday, June 29, 2003 10:01 AM CDT

We have been home for a week know, hurray! He goes back to the clinic on Monday. At that time we will talk to his doctor about what the plans will be; have lab work done and to have another bone marrow aspiration. This will let us know if he is in remission or not. Let pray that he is in remission. Also, if his counts are up enough he will be admitted and his fifth round of chemo started. His uncle Dewayne will be with him in the hospital this time. God help those nurses next week. Also Danielle is having some fun too. Danielle and her cousin Nick are in San Antonio visiting grandma for the whole week. I am still working on getting some pictures downloaded so please be patient with me.


Love ya'll lots,
Stacie

Monday, June 23, 2003 3:34 PM CDT

Here is brief history on Dustin from the time he was diagnosed.

February 15,2003-Diagnosed w/Acute
Myloid Leukemia subtype
M1.
February 18,2003-Began his 1st of 5
rounds of chemo.
March 12,2003-Released from the hospital
after 25 days in.
March 25,2003-Back in the hospital for
a central line infection
which had to be removed
and a new one replaced.
Also in for his second
round of chemo.
April 6,2003-Released from the hospital
with a new central line.
April 30,2003-Back in the hospital for
his third round.
May 4,2003-Released from the hospital.
May 9,2003-Back in the hospital for
a fever and infection.
May 23,2003-Relasped for the 1st time
with 10% blast. (Blast are
the cancer cells). Dustin
now needs a Bone Marrow
Transplant to be cured.
June 5,2003-Started his 4th round of
chemo, but on a different
Protocol than he was
irridually on.
June 10,2003-We finally got to go home
after 32 very long days in
the hospital. Also started
him on GCSF shots to boost
white blood cells.
June 14,2003-Ended up in the ER for a
fever and had to be admitted
June 17,2003-Released from hospital.
June 18,2003-Back in the ER after only
being home for a little
24 hours.
June 22,2003-Released to go home.

June 24,2003-
Dustin had a clinical visit yesterday just to get a CBC (blood work) and everything was great, no transfusions hurray! Also received a call from his doctor this morning and his counts are finally starting to go up. (ANC of 10 on Sunday to ANC of 230 today). ANC-means is immune system. The shot that I have been given him is finaly working. We have another appt. on Friday.

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----End of History----