Saturday, June 4, 2005 9:55 PM CDT

Well, this week has just flown by. I sit and find myself just staring at Dustin. He seems to be feeling pretty well and playing hard, but I can definetly see his little body being beat up by this chemo. He looks sickly to me. A little Pale and really thin frizzy hair. I dream of the day when he is TOTALLY CANCER FREE! Please LORD let this be your desire.

All in All I think Dustin is having a preety fun summer. I am looking foward to taking him to Big Kahunas on the 12th. This is a HUGE Water park that Dustin really wanted to go last summer and well we know how that turned out. If I can afford it our plan is to get passes this summer so I can take him a bunch.

Our St Judes trip is scheduled for June 16th and 17th for scans. Keep Dustin in your prayers for this will be his first scan off treatment. Shortly there after will follow his eye surgery in Mobile ALABAMA.

Thank you to all of you who pray for us regularly. I know the Lord hears your prayers for it is evident in our lives. LOVE Shawna


The Chosen Mothers
by Erma Bombeck


Most women become a mother by accident, some by choice
and a few by habit. Did you ever wonder how mother's of
children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth
selecting His instruments for progagation with great care and
deliberation. As He observes, He instructs His angels
to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, partron saint Greard."

Finally, He passes a name to an angel and says, "Give
her a child with cancer." The angel is curious. "Why this
one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer
a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will
drown in a sea of self-pity and despair. Once the shock and
resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling
of self-independence that is so rare and necessary in a mother.
You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that. This one is perfect. She has just
enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child
occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet,
but she is to be envied. She will never take anything her child does for granted. She will never consider a single step
ordinary. I will permit her to see clearly the things I see....ignorance, cruelty, prejudice....and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

Thursday, June 2, 2005 4:15 PM CDT

Well hello to all. We are down to only 2 MORE CHEMO's I can't believe it. His last day of chemo is also his diagnoses date. WOW!

Chemo this week was a little crazy. It started out with me totally missing my alarm clock. I must have turned it off in my sleep. Soooo needless to say we were 30 minutes late arriving to pensacola. It was supposed to be the easy chemo with just a push of vincristine but chemo just plain right out sucks and never is easy in any way shape or form. As they were pushing the chemo with Dustin laying flat on his back he starts throwing up with major force. I go to run around the table to grab anything for him to throw up in and I bashed my foot on the step that was pulled out of the table. I could't find anything other than tissue and the nurse had sterile gloves on so well he just puked in my hands. It was a little crazy and yes I am still limping from a sore foot bone. All in All Dustin had no side effects and feels preety good this week.

We are planning our trip back to St Judes for around June 16 and 17 for Orbital and skull Scans. I know thing are going to be fine.

Dustin starts a summers study program on Monday to help with all the school he missed this year. It will last 3 weeks Monday tuesday and Thursdays for him as long as he is feeling well. Well I am off for now. Wil update more throughout the week. Love you all Shawna

Thursday, May 26, 2005 12:04 AM CDT

Well only 4 more to go. Chemo went very well yesterday. We got set up in the room layed out on the bed and watched a little T.V. Dustin did have a hard time fighting off the nausea throughout the 2 hr process, but did very well altogether. Thank you Nurse Angie for always making our chemo days something to look forward to. And if your reading we Miss you Nurse Peggy!

Anyhow for you parents with children on chemo. We tried using I.V. Decadron with the Zofran and to our amazement Dustin has not thrown up once. Usually he will feel sick the rest of the evening and wake up the next morning throwing up for hours! YEAH FOR NO VOMITING! Too bad we didn't figure this one out 9 months ago (: But for the last few it will definetly make days after chemo easier!

Dustin I think is starting to get a little excited about having surgery on his eye. He practices in the mirror holding his eye open. I think if we can manage the dryness from not being able to close that eye he will definetly feel better about himself getting that eye open. I just spoke to our representative through mannatech. We are continuing the regimen of vitamins that Dustin is on after chemo for a while. One problem was getting the bulk ambatrose down, this is aloe based powder that doesn't taste that great. So he mentioned a woman that makes pill maker machines. The ambatrose can be put in capsule form YEAH!!!!! It makes 50 at a time with no hassle. She is on my list to call today for sure! For those of you not on any type of natural cancer fighters. I truely beleive the Mannatech Vitamins have kept our little boy healthy through out this journey. We will always continue to fight this thing outside of chemo. They are totally natural with nothing chemical in them. No sugar which I believe feeds your cancer cells and will definetly keep your immune system up. If you want any information on these vitamins or the ministry that helps children get these vitamins please feel email me with your phone number and I will call you. sapah76@hotmail.com

Today Dustin is at the movies with his cousin. We are trying to make a great summer for the kids this year. Last summer, well lets just say it STUNK! Love you all Shawna

Monday, May 23, 2005 9:39 PM CDT

I am sooo sorry for the delay in updates. I have had some issues with our computers and haven't been able to switch the relay picture on the front page either. Anyhow Dustin is doing pretty good, he seems a little slow and pale the last few days. We did blood work today. Pray his counts are good for Chemo Wed. He will get both chemos which does bring him down a bit. I can't believe we are on the home stretch. 4 more chemos to go. YEAH! I am excited and nervous all in one breath. I know one of the biggest reliefs for Dustin will be getting that darn port out. This is something he has never adjusted to. I cannot even think of touching it. He shivers with nausea just putting emla cream on and walks around like he is wounded even when it has a bandaid on it. LOL (: He is tooo cute! The nurses all know NO bandaid FOR Dustin.

Anyhow life has been sooo busy around here. We are starting the process of an addition to our home so things are a little crazy. The Kids think it is fun. I will add some pics once My computer gets up and running again. Anyhow I guess thats all for now. Dustin's onconlogist and the Ocular Plastic surgeon have agreed to wait untill Chemo is done to go forward with the surgery on his eyelid. We are looking around the end of June or so. Will let you know as it gets closer. Write more later. Love Shawna

Saturday, May 7, 2005 10:39 PM CDT

Sorry for the late update. Dustin did have Chemo this week. We went to Nemours hospital on Thursday instead of Wednesday so we could go to Mobile Alabama for the Ocular Plastic surgeon Appt. Dustin did so well this week with chemo. He was a brave trooper and did not get all worked up. I am so proud of him. We went to Olive Garden for lunch where Dustin and I spent a big portion of the lunch in the bathroom. That chemo just runs through him and burns coming out. After Lunch it then took us about 1 1/2 to get to Mobile from Pensacola.

When we got there we were very happy to see that The Ocular Plastic surgeon shared an office with a Dr. that made some very good choices and really took care of Dustin when His eyeball swelled so bad and everyone else was in a panic. we thought of him as an angel. The plastic surgeon comes to find out remembered Dustin from 6 months ago. He was hoping to see us.

To our surprise we were very pleased with the Dr. He was very experienced with a background graduating from Harvard, interning in New York City and doing many of these surgeries on pediatrics in our area. Not to mention the positive outlook on Dustins whole situation. He was also a hoot. Very good with the Children. He has a 4 yr old and a 2 yr old so he was on the same page as me. THANK YOU LORD.

As far as the surgery is concerned, he feels like it should be done asap. Him and Oncologist are working out weather or not the risk of infection is a problem. He will take a synthetic material and teather the lid to the brow muscle forming a crease in the eyelid. He will only lift the lid to about the median line so that dryness will not be a serious issue. He will be able to see out of that eye also using the brow muscle to lift it higher. The LORD always shows you what you should be thankful for in every situation. The Surgeon shared with us a family he will be doing surgery on this week. All three of the children ages 3 6 and 9 have a genetic disorder that causes there lids to droop. He will be performing this same surgery on all 6 of there eyelids. The parents are from a different state so they chose to do all 3 children at the same time. WOW! And we were shocked at doing Dustin's one eye. The Lord is always good at showing us the blessing in every situation. Our insurance is a little issue and possible may not cover Dustin so we will look at about $1,500 to 2,000 which was much lower than we expected.

When we got to the Surgeons office Dustin started going downhill from chemo. He ended up laying on the floor passing out. He almost slept through the entire visit and the 3 hr ride home.That evening and the next morning he threw up hard. Poor baby. By Friday night he was back to himself playing hard with his cousin. We have 5 more weeks of chemo and only 2 bad ones. YEAH! Anyhow all is good now. Dustin has played so hard all weekend. School is almost out. I can't wait!

I will update more as soon as I hear what the date is for Surgery. Love always Shawna

Monday, May 2, 2005 10:06 PM CDT

I always say I amazed at what God does in our lives but really I shouldn't be. I shouldn't expect anything less. God is good all the time, All the time God is good. With everything that takes place in each one of our lives God has orchestrated it. Some of us are going through very hard times and others worse, but stop to take a real hard look at how God's hand is truely upon you life. When we went to our good friends funeral last week our pastor reminded us that we are all in one single line awaiting our turn, our end here on earth. Who knows where you are in that line. The begining, middle, or end. It really doesn't matter because we are all destined in God's time. The question we need to remind ourselves daily is Are you prepaired. Are you prepaired in your heart. Are you sure what you believe. James had a very special life with a wonderful wife and 3 children. His career was soaring and he had just lost his father. His death left so many of us stumped. Why God chose him is a question we will always ask. But we did know his heart was for God. In this we will have peace.

I am very happy to update that Dustin is feeling wonderful. We finally got over the nasty flu that had us all down for over a week and now we are all feeling so much better. Dustin is full of energy with color to his face and hair that is starting to fill in again. (:

Tomorrow is his field trip to the local Gulfarium, it's like a miniture Sea World. We will leave about 8:30 am. Thursday will be a really long day for Dustin because he will get both chemo's in the morning followed by a trip to Mobile Alabama to meet with another Ocular Plastic Surgeon for a second opinion. Pray all goes well and God leads us in the right direction.

I would like to add a prayer request for an amazing family. They have been through so much and with such an amazing faith. Little Emma Grace has been on a ventalator for over 3 weeks with an infection in her lungs. Her website is www.caringbridge.org/ar/emmagrace to drop her a note in the questbook that she is in your prayers would mean alot to them.

Well until we meet with the surgeon on Thursday Goodnight and fairwell ...... Love Shawna

Wednesday, April 27, 2005 5:37 PM CDT

April 28, 2005 Dustin is feeling alittle better. Fever has once again broke. I kept him home from school. Hopefully we will be starting to be back to ourselves tomorrow. Love Shawna

Wednesday, April 27, 2005 5:37 PM CDT Sorry it has been alittle while since I last updated. Dustin was the Honorary Chairman of this years 20th anniversary for relay for life. It was a great experience. We did get rained well poured out at about 11:00. Dustin met with a few of the people that put the whole event together a fews days Later and low and behold the channel 3 ABC News was there. Our little boy made the nightly news. It was really neat. They gave him a very special Race car that was hand made by someone very special. His name is Dennis, he lost his wife last march to Cancer and has been so nice to Dustin and our family. Thanks Dennis for making Dustin such a special car.

This weeks update also includes my girls being so sick with high fevers. Lydia ( the baby) started running a high fever and it didn't break untill 3 days later when she started throwing up. I tried so hard to keep Dustin away but he got it anyhow. Yesterday he started with a fever that peaked 104. with chills and a possible addmission this morning. But as we would have it his fever broke at about 1:00 am this morning. He stayed fever free at the hospital today. His counts were good and his Dr ran a chest x-ray because he thought he heard some rumbles. That was also clear. We did go ahead with Chemo today. But low and behold he is starting to spike a fever this evening. He was 101.6 about 20 minutes ago. We may end up in the hospital if the fever continues to go up. Keep him in your prayers tonight. He is feeling ok just a little tired and weak from the fever.

I will update more as his fever unfolds. Love you all Shawna

Saturday, April 16, 2005 4:22 PM CDT

Well, I have now had a few days to really swallow the information given to us by the eye surgeon. I appoligize if my last journal sounded so grim, but I guess that is how I really felt inside. Making decisions like thses for your child is so hard as a mother. I believe you would only truely understand if you have been a mother with a sick child.

I had some time to research this surgery online and understand a little more about it. It still isn't exciting, but I know God will help us make the right choice. I also contacted Will's eye institute in Philadelphia. They are the original institute that removed his tumor to begin with. I am waiting for the surgeon to return my call.

Well outside of that Dustin is doing wonderful. He is picking up his energy this weekend and had His buddy Justin stay with him all weekend. Justin is the little boy that lost his father last week in the plane crash. There will be a service for him sometime this week. Please continue to keep them in your prayers.

We got Dustin's last road map page for Chemo and it looks like he will end treatment on June 15th if he doesn't miss any from his counts being to low. YEAH We are very excited. He has gone the entire yr of chemo without a blood transfusion. PRAISE THE LORD. We coudn't have asked for better Dr's and nurses through out our entire walk with his cancer. We love you all.

Well we are off to bed. Our church share dish is tomorrow and there are pony rides and a 10 foot waterslide they are setting up for the kids, It should be loads of fun! Love you all and thanks for your prayers.

P.S. please sign the questbook for us. It helps us to know you are out there reading and praying for us. GG. we already know you read it and check it every night. We love you. Love Shawna

Tuesday, April 12, 2005 8:53 PM CDT

Please read our website this evening because we we need your prayer and opinions/referalls.
Ok Well I am not sure where to begin. I wanted to share our day today without sounding to negative. Here goes....

We got up early to head out to chemo and the weather was storming so our drive took a little longer then usuall. Once we got to nemours we waited for a little while and the nurse said chemo is on its way from Downtown but was taking extra long because of the horrible flooding in Pensacola. Wellll we had another apt with the eye sugeon at 10:50 and time was cutting it close. So the Dr suggested that we go to that apt and then come back and hopefully chemo will be there.

We got to the eye surgeons office and was feeling a since of relief that we were finally at the point that Dustin's eye could possibly be saved cosmetically and visially. They called us back, and to our heartbreak the Dr just layed it out on the table without even trying to say it gentle.

He basically said that Dustin's eye will always be droopy, but that he needed surgery as soon as possible to lift the eyelid enough that he could see to start correcting the amblyopia (Lazy eye) that is now effecting his vision. He explained to me that after the age 8 or 9 amblyopia is non reversable and he could go blind in this eye. The procedure will be taking a cadaver (don't know if I spelled that right but basically a dead person's muscle) and making 3 incisions on the lid and 3 on the brow and threading the muscle from each hole and teathering the eyelid up. But the shocker to me was the part that he will never be able to close his eye again. He will not be able to blink or anything. Getting his eyes even and cosmetic looking nice was not his worry, just the vision loss. I as a mother am worried about both. This has been an issue for Dustin at school and he is more self consious about his looks as he gets older. Dustin tried to listen to the Dr. But he got upset and started crying. The Dr. Defentely did not talk to Dustin at all and seemed a bit in a hurry. I left the room and just cryed it all out of me. I didn't want Dustin to see me upset.

He explained to us that after the age 9 or 10 that this surgery will just be too hard. He won't even attempt it on adults because they just cannot handle it. He will more than likely suffer from very dry eyes. My concern is the radiation that was done to his eye has already damaged part of his tear production. I don't think the Dr. is not familiar with this surgery. I am just not sure he is the right Dr for us. He was just honest at what he can do for us, but it definetly broke my heart. I am truely blessed to have my child alive and doing well. This eye is just a small part. But it is something that he will live with for the rest of his life and It is huge decision for us to make for him.

My dad (aka POP) reminded me that every alley we have walked down has looked so dark and God has always provided the light for us. He will in this situation also. and I do believe so. Thanks DAD I love you.

To top it off Dustin is pale and pretty sick tonight from Chemo. He has had alot of diarrhea and vomiting this evening. Thank goodness he is fast asleep at this moment.

I know there is someone out there that has been in this similar situation with there child . Or knows of someone that has been here. We need help finding the right Dr to help us or to educate us more on this subject. I am completely giving this to God knowing my little boy will be ok and his eye will be normal and healthy.

Please contact me with anything Neg or Post that might help us in this very hard decision.
Love Shawna

Thursday, April 7, 2005

Thursday, April 7, 2005
Update. Today we had all clear good news. Dustins lump was just a swollen lyph node. Probably due to a virus. Low and behold Lydia started runing a fever today. My Dr. says the final report on me is clear WHEWWWW! Thank you LORD! So all is well in the Smith household! We are all off to bed Love Shawna

Wednesday, April 6, 2005 Well Sorry, still no new pics but mom and I sat down tonight and went over the family reunion pics and they are awsome. She is making a webpage with them all so I can pick the ones I want. We took like 3000 pics. Today was supposed to be the big chemo day but I realized he got 2 weeks off and this week was the second week. It sure felt like we already went two weeks But I guess with all the family here I got mixed up. sp we were not supposed to go today. That was a great surprise.

I guess there are few things I should write about. Lets see, I will start with Dustin. He has been feeling under the weather this last week. His eyes look a little glossy and he is just flat tired and emotional. I thought maybe his counts were down but the Dr. never called me after blood work last week so I guess it wasn't. Anyhow in all this He has had a little runny nose also. I found a good size lump in his neck but not where his nodes normally swell from infections. SOOOOO I am taking him to his pediatrician for reassurance that it is from his lymph node due to a virus.

On the other hand some of you know I found a lump in my breast last month and have since gotten a mammogram and ultrasound. The mammogram definetly showed the lump so they resscanned it to further check it out. 1 week of waiting for results the Dr says oh its nothing. So I stopped thinking about it. Then today I recieved a letter from the radiologist saying he recommended me going for further testing. Anyhow Life is never a dull moment.

I went shopping at walmart for groceries this week and as I walked around I was feeling so saddened for my good friend who lost her husband in the C130 plane crash last week. As I walked through the produce section I asked a worker if he had any individual sweet onions. He showed me where they were and as I walked away he said mam, I turned around and he said "we should be so blessed to be alive today" My heart sank and I replied " you are right I am very blessed. When I told him of my friends husband and my son His eyes swelled up. He told me he didn't know why he said that to me, but told me my friend and I would be in his prayers. Each day I realize more and more how fragile life really is.

His ways are not our ways! The Lord has a mighty plan. I have to remind myself of that scripture. Who knows my ways could be all messed up (:

Anyhow I love you all who pray for us and support us with your journal entries. I may not write every day but I check the entries often. Thankyou. Love Shawna

Saturday, April 2, 2005 11:38 PM CST

I am sooo sorry for those of you that check on Dustin's web page. It has been forever since I gave a good update! (: Life has been so busy. As most of you know our Grandparents had there 50th wedding anniversayr and talk about Family FUN!!!

We spent most nights up until 2:00 or later playing poker!! Lots of fun. Dustin Hung in there with the best of us. He never went to bed early. He didn't want to miss out!

Anyhow Life has slowed down a little that most of the family has now left for home!

Dustin did start loosing his hair again, but I think it is just about done falling out and he still has quite a bit. I buzzed it down a little shorter so it didn't look so thin. He is totally ok with it though.

We had a really sad tragedy happen in our family circle this week. Most of you have probably heard of the C-130 that crashed in Albania with 9 americans on the flight. Our families best friend was one of the 9 that died. It was my best friends sister's husband. He left behind a great wife and 3 awsome children 11, 9, and 6 yrs old. The 11 yr old spends a night a week with Dustin, They are buds. I can't begin to share the loss this family has to endure. They definetly need your prayers.

What a week but in all Dustin is doing great! we are on the down hill slope of chemo. I can't believe we are so close to it being one yr ago we found his cancer. PRAISE THE LORD our year has been in our favor. Our son Will survive and give us grandchildren in Jesus Name! Have a great night Hug your husband or wife and children extra special tonight!

I will have all the pics from our reunion on line in the next day or so! Check back! LOVE YA Shawna

Sunday, March 20, 2005 2:27 PM CST

well as most of you know we made it home from Memphis safely. we had a good trip and tried to make the most of the cold weather. QWe were'nt expecting it to be 29 degrees with a windchill of 14 degrees burrrrr. Expecially coming from sunny Fl. Anyhow most important news of all is the result of Dustins PET Scan. Of course it is neg. With not a single cancer cell to be found in his body! Praise the LORD! I went up there expecting nothing and this is what I got! Anyhow he is feeling really good. His cousins are here from Hawaii and Phili so they are having a blast.

I meant to mention before. Most of you know Dustin is on the mannatech vitamins religously 3 times a day. Well I went out of town for 3 days and Dad forgot to give them to him and then forgot them when we went to ST judes. Needless to say this is the first time he has been off them. His counts plumeted and he could not get chemo and low and behold we started seeing little hairs all over his clothes. Back on those suckers as soon as we got home! (: Hope his counts are up enough for chemo Wed. Will write more later. I will get more pics of Dustin with all his cousins. Love Shawna

Wednesday, March 16, 2005 1:43 PM CST

Well all the way from Memphis I will do a quick update. Sooooo far all looks wonderful. Everyone thought Dustin was done with treatment because of how wonderful he looks! They were amazed at his hair! (: Anyhow We got the result back for the MRI and all looks clean as a whistle. Only negative is more congestion on that radiated side. This was expected. Dustin did really well Although he is crazy boy from the sedation! They do not have the results back for the PET Scan but will call tomorrow to get those! We are pulling out of Memphis in about 10 minutes! Thank you all for your prayers. My little boy will continue to be healed from cancer PRAISE THE LORD. Love you all Love Shawna

Sunday, March 13, 2005 6:41 PM CST

Well I made it home last night and boy was I blessed. For those of you that don't know. We went to Creflo Dollar's world changers church in Atlanta. It was awsome. There were 8,000 woman at the seminar. I cant tell you how much I was blessed. I definetly am life changed and understand now more than ever how Dustin cancer has affected us and how to get through this!

I had today to spend with my girls so I tried to make it special. It is really hard on Rylee the 4 yr old knowing I am leaving again. I went and bought her a special project to work on while she is with the babysitters. We leave out tomorrow morning and will return on thursday. Dustin will be having full body scans including the orbit to make sure the left over dead tissue looks the same. He will have a PET Scan which will show us single cells if they are cancerous. I am at peace that everything is A-OK! He is doing awsome. His hair is so funny! He is too cute with his hair now. It is long enough he wants to make it stick all up and crazy! He likes it all spiked! (: He's a mess! We are going to make this trip to memphis fun. My mom and my little sister, who is 12 are also coming. I bought them a few things to do on the drive. It will take us about 8 hours! I will try and write again from the grizzly house to let you know how the scans went! Love you all. Shawna

Wednesday, March 9, 2005 10:36 PM CST

Well another Chemo down. YEAH! All went really good today. A little anticipation of the needle but it was over quick today! He only had a little nausea bu nothing a mint didn't fix!

Anyhow, I was talked into going to a huge womens retreat with my Best friend Stephanie at a church in Atlanta. We are leaving in the morning. I know it will be good for my to get away for 3 days but my stomach is already in knots knowing I am leaving my kids. IT seems so much harder these days to not be with them every second. I want to cherish every moment.

I get home on Saturday and then Dustin is due back at St Judes on Tuesday so since we are driving we will leave Monday sometime. My mom is getting to come with us this time. Dustin will get a full body Pet scan done. Please pray that there is not one single cancer cell in his body! I know things will be fine.

Well I still have to pack. Please pray for the Doughtie family. I am so saddened to tell you he passed away on Monday. I am proud of the courage this family had. His website is http://www3.caringbridge.org/tn/ptyler/ Tyler went through so much his last month of life and I know the family must be emotionally exhausted. You and your family are in my prayers Pat.

Love your children with all you have inside of you. Love Shawna

Wednesday, March 2, 2005 9:43 PM CST

Well another Chemo down today. We are plotting along closer to the end of treatment. Dustin did really well today. Started to shed a few tears before he was accessed but once we got going he was ok. Only a little nausea today. Definetly not as bad as last week. Thank you LORD.

Everything else is going good. Dustin felt great tonight and finished all his makeup homework. What a kid. I am soo proud of him. Well I am off to bed. Love you all Shawna

Monday, February 28, 2005 10:34 PM CST

Hey Everyone. Just a quick update on how are day went. I am totally exhausted and just got the kids to bed at a whopping 10:30, but hey.. you only get a wish once!

Yes I said Wish. DUSTIN Got to tell the make a wish representatives what he really wants for his wish! They came over this evening around 7:30 and the fun began. They did neat games with him to help him decide and they brought gifts for all the kids. I think the girls had fun too. Dustin's wish was...............dah dah da dah!!!! The all time favorite DISNEY TRIP With a twist. He wants to also be a trainer of the dolphins at Sea World and at Animal Kingdom. Ya know feed the animals and stuff! He is all excited! Anyhow all went smoothly except the fact we waited to eat and well that is why we are going to bed on a school night at 10:30. We were all starved. So a wonderful meal was prepared tonight. Ramen noodles and peanut butter sandwich YUCK! But it worked. Anyhow I will write more when I am not sooo tired! Take Care and God Bless. Love Shawna

Wednesday, February 23, 2005 9:24 PM CST

I first want to start off by appoligizing for not updating but every few weeks. Sometimes If there is not something specific going on I have a hard time writing. There are so many of our friends that are fighting so hard to beat this ugly beast cancer and I am heartbroken many of times when I come to this computer and read the other journals of how our friends from St Judes are doing. God is our only strength and I definetly have learned to trust more now than ever. Please keep Tyler and his family in your prayers. They are having a tough time. Tyler isn't doing well. He is continuing to have seizures. We were at St Judes with this family. His website is http://www3.caringbridge.org/tn/ptyler/

Dustin did very good today on his BIG CHEMO Day. I ended up having to take all 3 little ones to chemo which was a little crazy but worked out fine. Dustin has some wonderful nurses. Each one of them care for him and show it every week. THANK YOU NEMOURS. I don't know if they realize how difficult the chemos days can be. He did get a little nausea, but Zofran took care of that. He ALWAYS gets a horrific stomach ache on the drive home and today it just so happened to be on the interstate in the middle of no where land. After a few minutes of pure panic mode that he wasn't going to be able to hold it, I swung off the road and out ran my buddy! POOR Baby His tummy really hurt. Thank goodness it was totally foggy and hardly anyone on the roads this morning. He felt ok the rest of the day until tonight and the nausea started up again. ZOFAN to the rescue again. THAT Stuff is our magic pill. They are all sound asleep. I just went in the room and stared at how precious they are. Life is so fragile and so amazing. I just love them soooo much.

I have been talking a little with Nicole Mathews mom http://www2.caringbridge.org/canada/matthew/
and we both have the same idea brewing. They just recently did a show on OPRAH about 100 wives of husbands in Iraq. How wonderful would it be for our children to be recognized for there bravery, and to know there are alot of other children fighting this same battle as them. There are so many children that there lives are a race against time. Nicole and I would love to see this happen. Our idea is to have everyone interested to send me a small cliping of your family and your childs story. We want to mail in all the videos at one time. I am going back to ST JUDES in March and will take my camera. If you are interested to being a part of trying to make this happen email me at sapah76@hotmail.com I have also brought this to the attention of our local childrens cancer suport team. These children deserve a day of total honor for there bravery!

Our lives are forever changed! LOVE Shawna

Thursday, February 17, 2005 9:40 PM CST

Well just a quick update before I am off to bed. Dustin did great at Chemo this week. Still anticipatory nausea hit him, but we worked through it by sipping on OJ while actually getting the chemo. We had another problem once finished. His tomach felt sick from all the Orange juice he sucked down. sooo I think it will be sucking on candy next time!!!

All is well other than the crazy colds going around. Lydia is on antibiotics for a ear infection and Dustin is just always congested on that right nasal passage but it has I believe drained into his ear and he cried all night of a earache. Today was a little better although still hurting off and on. We tried some natural drops and warm bath OH AND A LITTLE HAIR CUT More like a trim around the ears. But he looks soooo handsome. His hair is about 90ack!!!!! Anyhow if his ear still hurts we will be off to the Dr Tomorrow for antibiotics.

Talk more Once I see how he does over the next day or so! Love you all Shawna

Monday, February 14, 2005 9:49 PM CST

Happy Valentines! We had a great day. It started out with a Pajama Party in Dustin's first grade class. There was a nice spread of food for breakfast and we were all in our pj's. It was cute. Dustin's little sister has been sick for the last few days so straight home it was to hold her some more. She has only wanted to cuddle and sleep. We have tried to keep Dustin out of the house as much as possible, but some things are unavoidable.

Anyhow Dustin has really been doing good and feeling good these last few weeks. I can't believe all the hair he has grown. This morning I actually had to wet it down for school. It was sticking up LOL!

We had a great time this week at our local mall. Our local country radio station hosted the St Judes Radiothon and had us a big part of it. Tons of places donated food and prizes. It was soooo neat and to top it off they were on there way to raising 50,000 in just 2 days for St Judes. That doesn't even touch the surface for cancer research. One of the little precious boys Stanton Haynes we stayed with at Ronald McDonald just earned his wings in heaven this week. I followed his progress since we left St Judes. His family needs your prayers. You can visit his sight at www.caringbridge.org/la/stanton It is the little lives like his that just break your heart and make you really want to fight for a cure, for treatment for these children. My prayers are with the Haynes family each night as this is the worst nightmare and mother can endure.

We are still waiting to hear from the surgeon about Dustin's eye. I will let you know when we hear something. I hope it will be soon. There are some children a school that have made comments and made fun of his eye. He has been so strong, but you can tell it bothers him. Especially in crowds. Routine Chemo of Vincristine on Wednesday. The rest of the week we will try and make every moment special and as normal as possible (Can you ever be Normal again with a child with cancer?) Hope you had a great Valentins day!
Love you all Shawna

Wednesday, February 9, 2005

Hi, this is Shawna updating. Can you believe it? (: I always check others websites and read the entries you all write in his journal, but sometimes I feel I just don't know what to say. I just want this all to be behind us. I want the fears and the sick chemo life to be a memory from long ago (: This is my prayer

Today was supposed to be a routine easy vincristine push, but as we mothers of cancer children know, nothing is for sure. Dustin got completly worked up today. He started getting scared about being accessed and the taste chemo leaves in his mouth really makes him feel sick. Also, he doesn't want emla cream any more (that is the numbing cream to go on his port before he is accessed). This started about 3 weeks ago. But today he procrastinated even just walking into the clinic. My mom Mary (aka Grandma) and I got in the elevator and Dustin goofed off and missed getting in. Before we knew it, we were on our way up without him. I figured he knew which floor and would follow, but when he didn't come up, my mom went down and found him crying. Poor baby. It seems he just didn't want to be there. Needless to say, after alot of anxiety, getting accessed, and then getting chemo Dustin started getting a red splotchy face. Before I knew it, I was grabbing the garbage bag for him to throw up in. He lost all of his breakfast and cried that he was soooo sorry.

I know that we are getting so close to the end. One half of me is excited and the other half is screaming with fear. I have got to stand on the Word over this one. It has been a very hard battle for me, but we WILL overcome this beast. Thank you LORD.

After we left, Dustin started to feel better and was hungry so we headed to a local buffet for lunch. And then... we got a little thrown off when an undercover police car pulled me over for speeding on the bridge! My mom and I were in deep conversation about Dustin and I definitely was speeding but he got my attention with the siren. I just accepted the fact I deserved the ticket. The officer walked up and said in a very strong uncaring voice... "Registration and license please". I said, "Yes sir". His next sentence was "Where are you going in such a hurry?". I explained we were on our way home from getting chemo for our son. Bottom line - GOD Showed mercy upon me yet once more. Thank you LORD. No ticket! Dustin did very well the rest of the day.

As our 1 1/2 hr drive home continued, I turned to look at Dustin in the back seat. All I saw was blood smeared all over his face and hands! But, I started laughing as I realized what he had done. Dustin had a very loose front tooth. One that made his mouth look like those horrible bubba teeth. Anyway, he had some time in the car to wiggle, wiggle, and wiggle and pop out that front tooth. He looks sooo cute. The updated pic on the top of this page I took right before Dustin went to bed tonight! Gotta love him!

We will work on calming him for next weeks chemo. I will also make sure to let him suck on a piece of candy or something so he doesn't taste the chemo and saline! Anyhow, all is going well otherwise. Kerrie (aka Nana) is having LASIK eye surgery this weekend about 5 hrs away. Pray all goes well!

Well we love you all and thank you for your prayers. We definitely couldn't do it without you and your prayers.
Love Shawna - Dustin's proud mother






Tuesday, February 8, 2005 10:38 PM CST

Hi...

Nana here. Thought I would just pop in and let you know Dustin continues to do well. He was here earlier this evening with his Mom and sisters. Dustin looks good.....nice to see him with his hair. There is still an appt coming up for Dustin to see a specialist about his eye. He sight is good, but the muscle was affected from his original surgery. This causes some concern, but our Dr Poppel thinks that this problem is fixable. The goal right now is just to get through the remaining 18 or so sessions of chemo.

Ben and Shawna are doing good. It was a little shakey with the last hospital stay, but all is well at present. A scheduled trip to St Jude's is coming up the middle of March. Dustin will have a whole body scan. Kinda one of those things you REALLY want done to confirm no metasasis, but it makes you a little shaky too just thinking about it. I know there are many families who relate to this gammet of mixed emotions!

Big family ta-do coming up the end of March. My parents (aka TUTU and POP-POP) are celebrating their 50th anniversary. Family coming from ALL over the county... kids and grandkids and greats. Should be a fun time and Dustin always enjoys seeing his favorite New Jersey cousins.

Chemo always on Wednesdays, but only the one kind tomorrow.... Vincristine. Dustin tolerates this one pretty well. Weather here is Florida is warming up nicely... couple more bouts of cool weather and then SPRING! We can hardly wait. To all of you in the NORTH and in ALL that snow - stay warm and inside. Thank you Lord, we live in Florida!

Monday, January 24, 2005 9:29 PM CST

This is a time to REJOICE. All is going great with my little boy. He is healing quick With only More good reports ahead of us. You are supposed to trust in the LORD that things will be ok but when you are finding it litterally hard to breath from the fear of what cancer can do to your child it overtakes you for a short while. Fear overtook me when I got the call that there were spots on Dustins lungs. I hyperventalated and just knew things were really bad. As I watched Dustin at the hospital I could only sit in awe of how Brave he was, not full of fear and trusting all I say to him that it will be just fine. I was reminded that this is how we as Christians are supposed to be with Christ. Fearless in trusting him. I can only thank the Lord for the results of our son. His life will be an awsome testimony. He teaches me something new with each step we take on this journey. "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." Proverbs 3:5-6

Dustin made it back to school today. His class had made him a great big get better card. There was a big picture of everyone in the class holding there arms up and it says we miss you this much! It was very nice to know he is loved by his friends at school. Thank you to Mrs Leighton and Heather Walker for all you put into that. It meant alot. Dustin seemed to do really well today. We played a little catch up this evening on school work, I think he will get back in the goove of things quickly.

Anyhow his incision site is healing nice, still a little tender but nothing tylenol won't fix.

I want to also send a HUGE Thankyou to some dear Friends of our family. The day we arrived home from the hospital I noticed the Expedition was gone from our house. It had been broken down since Chistmas with a shot transmission. We hadn't been able to get it fixed yet so we were making it work with one vehicle. I got word that our Friends had towed it to a transmission shop to be fixed and completely looked over. I can't begin to express how much that blessed us THANK YOU RICK AND ANN a hundred times over!

Thanks to all your prayers. They were heard and answered. Good night Love Shawna

Thursday, January 20, 2005 8:04 PM CST

I am so happy to report that Dustin and Shawna are FINALLY home after what has been a very long week. Doug and I drove over late this morning to bring them home expecting they would be ready to leave about noon. NO WAY! Why we thought the Dr's would actually keep their promises I will never know. The 6am x-ray happened at 9am. The chemo was after lunch too. Shawna kept asking and requesting for something to be done. At one point we debated holding the physicians lab coat hostage when we saw it on the back of a door at the nurses station!

The long wait was to get the chest tube out... that was the major delay. It has been very uncomfortable for Dustin and he has been routinely taking morphine to control that pain. Finally the surgeon did take the tube out about 2pm. There were tears, both from pain and weariness. Glad that is over.

So the SMITH family is all together. The girls were so excited to see Shawna. And after 5 days of hospital food, bed and BOREDOM, not to mention the horrible water pressure in the shower, she was happy to be home. I think a LONG hot shower was on the top of her list of things to do.

Shawna will be back on her computer now she is home. So for now this Nana will sign off. Crisis over. Thank the Lord.

Wednesday, January 19, 2005 4:05 PM CST

Thank you Lord.... we got the BEST of news today. It was a little grim yesterday with uncertainty about the results of the biopsy. BUT.... a few hours ago both the surgeon and the oncologist went in to see Shawna. With 100ertainty they know they got the nodule off the lung because the nodule has a name-- something...granuloma. Essentially it is a gathering of foreign cells into one spot.. they told her it looked like a small patch of sheetrock dust! Regardless, pathology declared it was 100OT malignant! They actually questioned Shawna as to whether or not Dustin has recently been around any new construction. In a normal situation a nodule such as Dustin had would just be watched. But due to the fact he has rhabdomyosarcoma and it is so fast spreading they felt compelled to do the biopsy.

I feel so certain that the prayers of all of you have turned the tide. Cancer is such a roller coaster ride anyway, but this ride is OVER!!!

We are rejoicing on this end and want to share this with all of you. Dustin is doing well today... sore, but if we had a tube hanging off our side and tubes everywhere, we might be a little sore too.

Dustin is scheduled to go down and have the chest tube removed in the morning at 6am. He is happy about that - he does NOT like the chest tube. That will be followed up with an x-ray to rule out any pockets of air around his lung. His scheduled dose of chemo will be administered and withstanding any complications, he should get to come home tomorrow afternoon.

And so this "crisis" has come to a pleasing conclusion for which we do give God ALL the glory. Shawna and Dustin are by themselved tonight. Doug (aka Pop) and I will ride over in the late morning to bring them home.

Good evening to all and what a good day it was.

Wednesday, January 19, 2005 1:51 AM CST

Hi

This is Nana. Been a very busy couple of days since we last wrote on this site.
Reason??? My grandson, Dustin, has been in the hospital and there was no access to a computer for either Shawna or me. As I write this, it is Tuesday night.... I came home from the hospital this evening. Grandma Mary was visiting and drove me back. But, Dustin is still there... with Shawna and Ben who will stay the night with them. But I am getting ahead of myself, let me go back a few days:

Shawna and I took Dustin back to Sacred Heart Hospital on Sunday night in preparation for tests on Monday. Dustin was doing fine, he so totally trusts Shawna to keep him safe and do the "right" thing. He is handling things well for the most part. He just hates the needles. Shawna, on the other hand, fear keeps raising it's ugly head and there have been several rough moments for her. Please lift us all in prayer over this issue.

Anyway, upon an admitting examination, floor interns found a swollen lymph node in Dustin's neck. Yuck! About the same time, Shawna noticed a "swelling" in Dustin's right groin when she was helping him shower - double YUCK! So come Monday, the tests began. He had a CAT scan and and MRI of his neck area. He ALSO had an MRI of his right eye orbit. I am very happy to report those three tests came back NEGATIVE for any sign of tumor or growth. Monday, after lunch, Dustin also had an ultrasound of his right groin. The results showed the "swelling" Shawna found was NOT a mass or tumor. There is a small personal problem in the area, but easily repaired at a later date. SO, Monday was full of tests, but all good news. Thank you Lord for that.

Of course, the REASON Dustin was admitted were the nodes on his lung. That repeat scan Dustin had on Saturday - those results only showed a tiny, tiny node on his right lung but it is there. The other node they had been seen on his left lung was not to be found. Unfortunately, the tech that took the repeat CAT scan was not aware that the first scan showed ANY nodes. After we told her in conversation after the scan was complete, she mentioned had she known about the first scan, she would have taken smaller slices at the section showing the nodules. Aaaaugh!

Anyway, afterwards, we waited in Dustin's room much of the evening and then Tuesday morning. B-O-R-I-N-G. Both Shawna and I felt a little more than claustrophobic. But Shawna is the only one that threw something in the room in frustration! Hehehehe! Guess it was a good way for Shawna to relieve some of her pent up frustration - especially since she did not break anything!

The decision was made, based on the 2nd ultrasound of his lungs to set up a specialized CAT scan with immediate transport to the operation room for a lung node biopsy. This took the hospital 3 days to set up as the services and skills of 2 departments and 3 specialists had to be synchronized. Actually the procedure Dustin underwent is called a VATS (video assisted thoracic study). In simple words (I hope), this means Dustin was taken down for a third CAT scan of the lungs. But, this time, he was put to sleep. While under, a surgical specialist inserted a small needle with dye into Dustin's right lung and using the skills of the radiologist to guide him, dye was inserted at the site of this very small node. Remaining asleep, Dustin was wheeled immediately up to the OR to an awaiting surgeon. Laproscopically (tiny tools, small incisions), he would go in to remove the node guided by the dye the radiology specialist inserted.

A pretty good job was kept keeping us informed during the 4 hours we were not able to see Dustin. We are thankful to the staff and nursed for this. Shawna was understandably pacing the floor much of this time. I did manage to sneak down to the cafeteria and we both had a much needed hot lunch during the wait.

Dustin left us about 12 noon. We reunited with him the recovery room at 4 pm. The surgeon's news was not bad, but not great either. The injection of the dye in to the nodule was not fully successful. Once the surgeon opened him up, he found the blue dye had spread all over. It was difficult for him to locate the exact spot. SO, he took an educated guess and biopsied several what he termed "questionable" spots. Being honest with us, he said that there was a chance he was not able to hit "the" spot either, so negative results will not be totally conclusive. They will repeat another Cat Scan on his lungs in about a month.

Preliminary results come tomorrow with the final results not for several weeks. Let the wait begin. However, both the oncologist AND surgeon believe the results will be negative. Still, that percentage of uncertainty over the results stinks.

I have been with Shawna at the hospital with Pop and Grandma Mary and Ben holding down the fort. However, Ben did come to Pensacola tonight with Shawna's Mom, Mary to see Dustin. Ben will stay with Shawna and Dustin tonight and then Ben will have to come home early tomorrow to retrieve the girls from Doug and I. My Mom is having knee surgery, and I need to be with her for several days.

Dustin woke up this evening about 6 pm grumbling for food. That has to be an excellent sign. He does have a chest tube to prevent a pneumothorax (air embolism) in his lung. There is also pain, but we will make sure that will be well managed. Shawna and I discussed this very thoroughly and would not let the Dr's leave until orders were written to cover him carefully for any pain and/or nausea. By 630 pm Dustin was awake and eating chicken soup and cheese crackers! Pain was present but so were the medications! Dustin was very wide awake and was sitting up in bed playing Nintendo with his father when Mary and I left the hospital about 7 pm. I don't as an adults, any of us could do near as well!!

Tomorrow should bring the preliminary results from the biopsy. Looking for good results, but hate it that even "good" results may not be conclusive. Dustin should get to come home Thursday afternoon or Friday morning.

Not sure what went on the rest of the world as mine has been closed in for the past several days. Shawna is a wonderful Mom, Dustin has received excellent care at the hospital. Just wish this whole thing was over! Sorry for the length of the entry, but this should catch you all up. Rylee and Lydia are doing well. With so much family, this is one burden Ben and Shawna have not had to concern themselves with. Family has pitched in wonderfully and the girls don't seem to be warped at all!

I am so grateful for the support and prayers. I say it often, but it is true. Without the Lord in our lives, this would be next to impossible to handle. He is in control and His mercy will endure forever.

Nana

Saturday, January 15, 2005 6:41 PM CST

Hi to all…

Nana here, taking a moment to fill you in on what is up with my grandson – Dustin. Wednesday the 12th Dustin had a Cat Scan. We got the results on Friday and they films showed a couple of spots on his lungs. We immediately scheduled a repeat. This morning as a matter of fact. So, Ben, Shawna, Dustin and I were up and on the road to Pensacola at 7am. Dustin was admitted at about 8:15 am to Sacred Heart Hospital in Pensacola (70 miles away) and he was put on the “first come- first serve” list for a follow-up cat scan. The wait began…..

Grandpa Wally, Grandma Mary and Aunt Selina came over about 11 am to join us in the wait... We were still waiting for the CAT scan at noon. My other half… Pop (aka Doug) stayed home and has kept the girls all day. What a man! Their day went well.

Dustin finally had the CAT scan at noon. Dr Chachi (Dustin’s oncologist at Nemour’s Clinic) came in to see us at about 1:30ish this afternoon. This is actually a follow-up CAT scan to one scan Dustin had on Wednesday. The Wednesday scan showed two small “nodules” – one at the base of each lung. Each node was a little larger than the opening of the end of a ball point pen.

The repeat scan today we had hoped would show NOTHING….not so. The nodule on the left lung did not show up on today’s repeat, however, the one on the right lobe is still there.

What this means is more tests. Dustin will be admitted tomorrow night in preparation for several tests on Monday. He will have an :MRI of his eye orbit… the site of the original tumor, a complete neck MRI (nose to shoulder) which includes the majority of Dustin’s lymphatic system and a repeat CAT scan of his lungs. He will be sedated through all of this.. thank the Lord.

While under sedation, a specialist will inject a fine needle with dye at the exact spot of this tiny tumor. Then there will be a major consult to determine whether or not the nodule should be surgically removed for biopsy. If yes… then this will probably mean another night in the hospital with surgery probably on Tuesday. NOT a major surgery… so hang in there Beverly! Just a small incision from the back… ribs retractd JUST enough to reach in and snip the “dyed” nodule. Couple of stitches should seal that up. Preliminary biopsy should this happen, should be back within 24 hrs and before we leave the hospital. That will be another story, another day.

Dustin hates the needles but is doing well. He has a reasonable understanding that the little “lump” may be not good. However, the Dr is very optimistic that the cancer has NOT metasisized. Hope that turns out to be true!

Ben has to work Monday and Mary has an important appt, so I (aka NANA) will go with Shawna and Dustin to the hospital late tomorrow afternoon to check in. Fun stuff is on Monday. My parents (PopPop and TuTu) will watch the girls at THEIR house until Ben gets off work early Monday afternoon. Hoping to know something by then, Shawna’s Mom will plan on staying at the hospital Monday night if needed.

Dustin rolls with the punches, but it is much harder for Ben and Shawna… ESPECIALLY Shawna. She was at first a wreck and all of us felt our hearts in our throats. HOWEVER, God still holds even the heart of the king in the palm of His hand – this must include doctor’s too. . In other words, He is there and will not forsake NOR forget us. Please pray for the family, what a roller coaster ride this cancer is. I somehow UNeagerly anticipate this will not be our last ride either. Phew. Hard on the heart.

I will not write again until I get home on Monday night. Please do remember Dustin and the family in your thoughts and devotions. We thrive and survive on the prayers and support of all of you.

Blessings on your and yours. Hug those kids and grandbabies. We are ALL fortunate so much more than most.

Nana

Friday, January 14, 2005 9:40 PM CST

Well I can barely even write as I am so heartbroken. I got some devestating news today that the recent cat scan done on our little boy came back showing 2 nodules of some sort on his lungs. WHY GOD? How could this be. He has been doing so wonderful and now this.

They are admitting us in the morning to do another CT Scan on him. If they are still there they will send us to a surgeon to What the Dr Said "Pluck it off and biopsy it." PLEASE GOD HELP US THROUGH THIS. Love Shawna

HAPPY BIRTHDAY TO DUSTINS LITTLE SISTER LYDIA SHE IS 2 TODAY. A day we will never forget. Bitter Sweet.

Sunday, January 9, 2005 3:32 PM CST

Hi Everyone. All is going so awsome. Dustin is energitic more than I have ever seen him. These 3 weeks off from Chemo really showed me what things used to be like. His hair is totally full all over. It is a little different in texture and off a little on the color but not to bad. He really is doing good all the way around. School is another area I am really proud of him. He is really beginning to sore. Reading is becoming much easier for him and the teacher and I believe with this rate he will make it to 2nd grade.

Dustin had a Dr appt with the Opthomologist Dr Poppel this week and we are looking at the possibility of doing surgery soon on his eyelid. He has referered us to a Opthomologic surgeon who he trust dearly. The two choices for surgery are 1. We can hope the muscle in that eye lid has just been stretched out and damaged from surgery making it weak which will allow them to shorten the muscle making it tighter and fix the problem. This is our first choice. 2. They will take mucle from his thigh and make a sling coming down from his forehead eyebrow area and sling it down to the eyelid. This has to be done to both eyes for eveness. Much more involved. We are waiting to hear back from the office to let us know when we meet with the surgeon. Pray all goes well. He is alittle nervous but ready to look normal again.

On another note our Ford Expedition that has been giving us trouble is totally undriveable. We need a whole new Transmission. ): It is so sad not having a vehicle. Hopefully soon she will be up and running again.

Also talked to MAKE A WISH this week, they are short on volunteers in this area with getting childrens make a wishes so she is hoping to have someone for Dustin by the beginning of Feb. He is really excited. Don't forget Dustin has Chest CT Scans this week on Wed. Will post more after the scans! Love you all and thank you for your prayers. Love Shawna

Monday, January 3, 2005 10:43 PM CST

Well getting back in the groove of things was quite a challenge. We had a wonderful Christmas and New year. With the Surprise of our Best friends from San Diego our week was full of Fun. Dustin having 2 weeks off from Chemo was a real blessing. Lots of late nights and sleeping in. He has felt really good up until tonight with the start of what I think is a little cold. He mostly feels the sinus congestion in the nasal cavity that had radiation. Only that side is congested I'm sure its probable just a cold starting.

Anyhow, I have lso much I could write, but will try and keep it short. Ben and the Kids surprised me with an incredible birthday party Dec 28th. It will be one I always remember. He reserved a local resteraunt and private singer and had so many people I love all together in one room. He truely is a husband who went above and beyond. We walked into the restraunt just the two of us alone for dinner and there sits about 50 of our special friends and family. Including our best friends from San Diego, Family friends from Orlando Eric and Susan, Jon and Merilee Martin (Carter Martins) grandparents from Atlanta, and our closest friends and family locally. My husband read me a poem he wrote and got on one knee to ask my hand in marriage a second time with a beautiful platinum diamond ring and band. It was like a fairly tale come true. I had a table full of presents like at a wedding. I can't begine to express how wonderful it was. I don't know how I deserved it all. Thankyou to all who were there. I love you all. We have been married almost 10 years and I couldn't ask for a better husband or children. The kids had a wonderful time too and Dustin got to sing with Jonnie Lee at the end. He was so cute with the microphone, and wasn't shy at all. I was so proud of him. I will get Nana To add the folder of pictures of that night for you to all see.

As for the New Year, I pray and believe it will only bring us good news and a happy year. Dustin's hair completely filled in over the holidays. I am shocked. Everyone made comments when he went back to school today. Made him a little shy, but He looks so good. Still continuing the Mannatech Vitamins and all is going well.

One bit of a bummer this holiday is our Ford Expedition broke down and it looks like close to $500 to get it going again ): I should find out more tomorrow. I had it towed this afternoon to the mechanic.

Well, I will keep you posted over the next few weeks. Dustin skips Chemo this coming Wednesday and then Jan 12 he has Chemo and a CT scan of his chest.

Talk more then. Love Shawna

Monday, December 20, 2004 11:11 PM CST

NEW PHOTOS ADDED ON DEC 21ST!

I hope everyone is ready for Christmas. I know I am and not because of gifts and food, well maybe food LOL (: I have enjoyed so much just the time with the people I love and doing for others and feeling so blessed I cannot even express it into words. Ben and I finished Christmas shopping together this weekend and as I walked through the mall I just sobbed tears, it took a little while to pull it together with Bens help. I feel so grateful for our family and what we have at this very moment. The Lord is faithful. I want to thankyou Lord for showing me the true meaning of Christmas this year. I can't even begin to imagine wlking this path without you.

Well as for Dustin he is doing good but not as good as he let on last week. We drove 1 1/2 for chemo on Wed only to be told his blood counts were very low. He has been so energetic that it took me for such a surprise. I started crying, this was twice in one month chemo had to be skipped because of his counts. No wonder he has a full head of hair growing back. Dr Kelleher reassured me things will be fine and that due to our whole household having bad colds and coughs the virus probably pulled his counts down. As for the sore ribs, he felt around and thinks it is just sore muscles from coughing, but he scheduled a chest CT Jan 12th since he is due anyway. That will definetly ease my mind.

Anyhow the weekend was really good. My grandmother is here from NC for Christmas. Dustin calls her Gramy. It has been so nice spending time with her, and I am so glad she is able to see how well Dustin is doing too. It has eased her mind I'm sure.

Today I took Dustin to the local clinic for blood work, I should get the results back in the morning on how things are looking and weather or not he will get chemo on Wed. Keep him in your prayers. Hope everyone has a wonderful Christmas and remember not to let the hustle and bustle of things get in the way of the true joys of Christmas. We Love you Ben & Shawna

Monday, December 13, 2004 10:50 PM CST

Hello to everyone! I appoligize for the delay in writing. It seems like time just passes by when there is so much going on.

This week was really good. I am amazed how well Dustin has been feeling. And low and behold his hair is really thickening and the spot where it was bald from radiation, Well it is filled back in. And I am so excited to see the tiny little prickles coming out of his eyelid YEAH!!! I know it won't last, but I guess it makes me feel good knowing he won't permanetly be stripped of all hair!

This last weekend was a real blessing. We got an invitation to go have breakfast in Pensacola with the other families from the area that have children with cancer. The Kiwanis club came and cooked and wonderful breakfast with pancakes, eggs, bacon, grits, and the works. Then Santa Showed up with a wonderful flannel blanket for each child. Once Breakfast was over they announced that each child was to recieve a $50.00 shopping spree at Kmart to buy whatever they wanted. They opened the Doors early for the children with cancer and let them go free. It was soooo neat. I was very overwhelmed seeing each child there in our small hometown. It seemed different then being at St Judes, I didn't realize there were that many children from our area with cancer.

Anyhow Dustin got something he had wanted for a while. A Hot wheels race car track. It took me over an hour to put that sucker together. I took pics and will add them tomorrow.

Please keep Dustin in your prayers. He is doing so awsome, but is due for both Chemos this week and I really Pray he keeps his strength through the holidays. I also have a little worry weighing on me because when I tucked him into bed tonight I asked him if he feels ok. If anything every feels wrong or hurts he needs to tell me. He said his ribs were sore. So I layed him down and pushed on his ribs and under the bottom part of his ribs were pretty tender. I will have the Dr. Take a look. Never can be tooo careful, but It is probably nothing to worry about. He jumps around and wrestles around all the time lately. I worry over the smallest bruise. (: It is awsome to see him so Happy. I love you BUDDY!

Chemo Wednesday at 9:00 a.m. Talk more after chemo Love always Shawna

Monday, December 6, 2004 10:42 PM CST

Well Everything has been going very smoothly since our return from St Judes. We have been busy pulling the house back together from My wonderful husband laying new wood floors for us and much more while we were gone. It's like a new house! Dustin loves it because he can run and slide in the living room. (:

Anyhow Dustin is doing really good. He goes in for routine Chemo on Wednesday for vincristine. He is working soooo hard at school and during his after school tutor sessions. I am soo proud of him! I will update more as the week goes on. Love Shawna

Thursday, December 2, 2004 3:08 PM CST

Well here we are in MEMPHIS at St Judes and all is going well. This is our first trip back for a check up since Radiation. Everything has gone smoothly, yesterday was a skull x-ray and the routine check ups with the oncologist. Today started very early for a MRI. His apt. was for 6:30 for sedation. Im not sure why but I guess being a little worried about scans and all I was a little emotional watching him go under sedation. He wants to kiss me every few seconds until he is finally out. Its his way to ensure I have not left him. (:

Met with Dr Kraisen and nurse Pam (our Favorite) at Radiation today. He went over the scans with us and all seems to be looking good. Dustin has a little more tissue still where the Tumor was but it appears to me dead tissue. This will be watched closely. They did not do a whole body scan this time, It is scheduled for Feb. SO Is a huge relief and a very enjoyable Christmas is ahead of us Thank you LORD

Flight leaves at 7:30 tonight! Can't wait to get home, Ben has worked VERY VERY Hard on laying a laminate Hard wood Floor in the Living room, dining room, kitchen and office. I am blessed to have a wonderful husband THANK YOU BABY! I love you! Talk more soon! LOVE Shawna

Saturday, November 27, 2004 5:23 PM CST

Added new pics in the album of Dustin's hospital stay!

Will write more as the week progresses. We leave for St Judes on Wednesday morning. Please keep Dustin in your prayers that all scans are Clear!!! Love Shawna

Thursday, November 25, 2004 8:13 PM CST

Well I hope everyone had a wonderful thanksgiving. My day was filled with thanks the whole day long. For those of you that knew Carter Martin, we had the privelage to have his grandparents and great grandma here from Atlanta Ga for Thanksgiving dinner. They were loved and warmly welcomed by our entire family. They truely are special people to us. They brought gifts for our 3 children and gave my mother and I a cookbook made by there church. Thank you Martin family for making our Thanksgiving a special day If you are unfamiliar with Carter and his incredibly brave story you can visit his website at www.caringbridge.org/ga/cartermartin.

Dustin did get out of the hospital last week and finally broke his fever the next morning. We rechecked his WBC on Tuesday and was very pleased to see his ANC had come up from 36 to 1000. This was very good. He was able to recieve chemo on Wednesday. GG Flew in the night before and was looking forward to going to the hospital with us wed. Dustin, Rylee, GG, Kerrie aka nana and I all loaded up and went to pensacola for chemo and breakfast.

Everything went smoothly and I had a chance to go upstairs and check on a little 3 yr old who had just been diagnosed with Wilms tumors the week we stayed in the hospital. They found a huge tumor in his belly that had overtaken his kidney. They also found over 100 spots in his lungs. Please keep Nicholas in your prayers. They did remove the tumor in his belly along with his kidney. He will start radiation this week to his lungs.

Dustin had both vincristine and actinomycin on Wed. The Actinomycin has really given Dustin a bad stomach ache the last two times he has gotten it. Horrible diarrhea and nausea. If you know any secrets to preventing this please feel free to let us know. We will try whatever it takes.

Anyhow all is well otherwise. I will be posting some new pics this week of Thanksgiving and of Dustin on his new Bike GG got him! (: Check back soon.

Love Shawna

Tuesday, November 23, 2004 9:24 PM CST

Good evening....
Nana again - still pitch-hitting for Shawna. I am so happy to report that Dustin is home. He actually came home Sunday late afternoon when his blood counts started improving. He was so happy to leave the hosptital. I must have gotten a least a dozen hugs and kisses when he and Shawna arrived to pick up the girls. (even at age 7!)

There is a trip tomorrow to Pensacola for the chemo he did not get last week. He did have bloodwork done today but the inevitable happened. When your last name is SMITH... anything can happen when it comes to paperwork and it did today. Dustin had the blood drawn but the results were credited to another DUSTIN SMITH! Needless to say, this means he will have to have blood taken again tomorrow. For us, this means what would have been a 3 hr trip to and from Pensacola becomes a 5-6 hour trip. Yuck!

But... this won't be TOO bad. Because...when all this started up last week with Dustin, his great-grandma (A.K.A. "GG") was really concerned. Dustin is her best buddy and so she did what any "best buddy" should do. She bought a ticket and is coming to FLORIDA. We will leave momentarily to pick her up at the airport. She is flying down from Maine and the day has been a long one for her. Shawna and the kids were going with us to the airport, but GG is delayed over an hour and won't be in until about 1030 pm. So.. the kids went home to bed and I know GG will hit the bed here about as fast as we get home. I hope she won't be too disappointed that her "best friend" is home sleeping.

Dustin is very excited about GG being here as are we all. It will make for a fun and busy four days until she flies home on Sunday. So, overall, all is calm. Hoping the labs show improvement from this weekend as another stay in the hospital would certainly mess up the holiday. So..... PRAY!

We have a map of the US... I hope to go over Dustin's guestbook and stick pins to mark the location of all the people praying. This is something I would like to do with Dustin. Should be quite a project... just hoping we can find all the towns! Meanwhile...off we go to the airport. Have a Happy Thanksgiving... we truly have a lot to be thankful for this year. Need I say more. The Lord Bless and keep you all.

Nana

Saturday, November 20, 2004 7:55 PM CST

Hi all..

This is Nana... again. Dustin did not make it home as his 101 degree fever lingers on ... and on...... and on. What a bummer. So that you know, he is not feeling especially BAD. He is just very fatiqued and tired of being at the hospital. To quote him, he is B-O-R-E-D and wants to come home.

Mary (Shawna's Mom) came home from Pensacola today. I had thought that Shawna might like to come home for the night and shower and whatever, but she won't leave Dustin. So my plans to stay overnight with Dustin tonight were put on hold. Tomorrow Pop and I will take the girls over to Mary and Wally (Shawna's folks) and then ride to Pensacola to spend the morning at the hospital with Dustin and Shawna. About lunchtime, I hope to drag Shawna OUT of the hospital and take her to lunch before we drive home. Pop will happily stay with Dustin while Shawna and I leave for an hour or so.

The delay in Dustin's discharge is due to the fact the Dr.'s need to determine whether or not Dustin's infection is viral or bacterial. A viral infection will run it's course and be over. That would be relatively easy. A bacterial infection, on the other hand, poses lots of questions. WHERE is the infection. WHICH antibiotic will work. HOW LONG does it take to kill the infection. The cultures have not proved conclusive yet and so Dustin will have to remain in the hospital until they get some answers. The fact that his fever has not come down is bothersome.

So that's about the sum and total of it. It is a waiting game. Before we leave to go to Pensacola, I will print out the past several pages of Dustin's guestbook to read to him tomorrow. Maybe that will encourage both him and Shawna as it certainly is encouraging to me. Tomorrow evening I will write again and let you know how things are going. Many thanks for the prayers, messages and good thoughts.


Kerrie (otherwise known as NANA)

Friday, November 19, 2004 8:15 PM CST

Hello...

This is Nana - filling in for Shawna. Just want to let you, our family and friends know, there has been a setback in Dustin's health. Shawna and Dustin did make the trip to Pensacola on Wednesday as planned. But on Tuesday Dustin had had his blood drawn here in town.

So, once they arrived in Pensacola... Shawna learned that Dustin's neutrophil count was too low for him to receive chemo. This is actually the first time this has happened during Dustin's treatment. Let me emphasize, that neutrophils are WHITE blood cells.. they fight the infection... i.e. the cancer. His body at this time is too compromised to safely pump him full of chemo as he is especially suseptible to infection. So...no chemo. Okay... no big deal. But, then came the fever. Started Tuesday. Low grade, came and went but then it spiked up over 101. THAT was bad news. Perimeters are that any fever over..... you got it, 101, requires Dustin to be hospitalized and put on IV antibiotics.

He was not a happy camper.. actually, none of us were. Shawna and her Mom, Grandma Mary made the trip with Dustin for the overnight stay in Pensacola. Our local hospitals are not equipped to treat a child with cancer, and so to Pensacola he would go. We were told it would be an overnight stay. Yeah..... sure. As of tonight, we are told maybe, maybe not. Now the length of stay is dependant upon the preliminary results of blood cultures which should come back tomorrow - Saturday afternoon.

May get to come home, may not - we will have to wait and see. When I talked with Shawna earlier this evening, she had not given Dustin this "extended" stay news. He will be so bummed... we had all told him it would be an overnight stay only - phooey.

Pop and I have the girls.. Rylee and Lydia. Fun for us and them too I know. Of course, NOTHING gets done while they are here, but that's okay too. I am just so grateful that at this time in all our lives, the family is close. Speaking for one of four VERY DOTING grandparents, we are happy to be nearby to help.

Dustin will be fine. A concern is that he is falling behind in school. This was to be expected I guess. He misses so much. But we just keep encouraging Shawna that he will catch up easily when this battle is over. He is smart and for now, only needs to concetrate on getting well. Shawna has been such a wonderful attentive Mom and so involved. I am so proud to call her my "daughter". (we don't like or use the IN-LAW words!) It is fair to say she is pretty stressed and stretched to the max. Tears come easily as there are constant pulls on her time and attention. Please continue to lift not only Dustin, but Shawna and Ben up in your prayers. Tough time for all.

I will go ahead and make sure to update this site tomorrow as I know many people check in to see how life is going for the SMITH family and Dustin. So... we have a little "rock in the road", it's okay. The Lord still reigns!


Nana

Sunday, November 14, 2004 11:08 PM CST

Well another great weekend past for our little guy. He is feeling well and staying strong. We had a yard sale this weekend at his grandma's house so Dustin printed flyers with his picture on it to educate people of childhood cancer and raise money for St Judes research. He was so excited and made $100.00. We will take that with us in a few weeks when we go back to St Judes. Our trip back is scheduled for Dec 1st. Our flight is scheduled for 6:25 a.m.

Anyhow Dustin is still continuing to struggle with 1st grade. He is failing horribly, but we started our Therapy/tutoring 2 days a week and can already see his mind expanding and growing. I sure hope he can catch up quickly. It is something we work on daily. without putting to much extra on him.

Anyhow we pulled our carpet up in our living and dinning area and found original oak hardwood floors under it. So we will sand and stain them this week if all goes as planned. Since we got back from St Judes we have really been cleaning house and trying to put less clutter and stress on us to enjoy fun time together.

Today was a great family day. Ben and I loaded the kids up for a day at Destin Commons. It is a really nice outside mall with a old time hamburger joint and the RAVE Theater. We had alot of fun and then watched the new animated Christmas movie Polar Express eith Tom Hanks. It was really cute and the baby was perfect through the whole movie! YEAH!

Anyhow all is well for Dustin and the kids. We have Chemo on Wed. He will get vincristine and Actinomycin D so we are probably looking at some down time this week feeling a little down and out! Pray we don't! Well I am off to bed. Talk more later Love Shawna

Tuesday, November 9, 2004 10:46 PM CST

Well I didn't get to write this week after a few eventful things happened. So a quick update before bed.

Fridays play at Dustin's school was soo cute. I was very surprised to see how well Dustin remember all the words to the songs seeing how he had missed so many days. Close to the end of the play they sang "take me out to the ball game" and then blew on Gazoo's in the same tune. Dustin starting falling behind and soon I noticed through my video camera close up he didn't look right. He looked so pale and was no longer singing or participating. I started to get worried like he would pass out or something. He then started crying so I ran up and got him off stage. He was embaressed but really felt bad. He said his tummy really hurt and his arms and legs started feeling week. I checked him out of school and he rested most of the day. That evening he was feeling back to himself so I let him go to the movies.

As the rest of the weekend passed and this week things have been pretty good. Nemours in Pesacola where Dustin gets his chemo had damage from the Hurricane so we are in another building down the road. Because of this Labs are not being picked up so I have to transfer his labs (blood) myself to the hospital and then it takes forever. They wrote me a perscription to get Dustins blood counts taken locally the day before so we don't have to go through the rigamaroo. Today was the first day going to the local hosptal for labs and boy was that not fun. Dustin got stuck twice and still it was not enough. I was so upset. Dustin was in tears and all the guy could talk about was how good he was and to let him try again. I just said NO THANKS! So I guess we will still go through the rigamaroo tomorrow. Oh well My little buddy is worth every bit of it!!! (: We are off to bed for a early chemo day tomorrow!
Take Care Love Shawna

Thursday, November 4, 2004 9:45 PM CST

I am so blessed by the guestbook entries this evening. Many of you signed with an encouraging word. It was much needed.

I go through each day learning our family and myself has strengths deep down I never new we had. This journey has been like nothing I can ever compare it to. I feel ever so close to our heavenly father and giving all that happens in our lives completely to him. There is so much I and many of you will never understand when it comes to this ugly thing called cancer. Why children have to endure such a nasty disease is something I don't think I will ever fully get. I can say that this journey has made Dustin an incredible kid. I will always remember the smile on his face even through such a tough time.

Today as I watched him take his large dose of vitamins he chews them quick and makes this awful gagging sound. It makes my stomach churn But never does he complain. The Mannatech vitamins he is taking is alot and even when I am prepairing them the smell gets to me. I am soooo proud of that little boy. He is a fighter. We will overcome this battle with cancer and enjoy looking back at this journal some day with his children. He won't have the " I walked 10 miles in the snow holding a hot potatoe story" His will be original and show how truely brave he was.

Chemo this week went really well. His counts never dropped this week as anticipated by the Dr's Thankyou Mannatech I pray we can continue to keep him this way the next 9 months of Chemo. Little Trever Pecks Grandmother wrote in our journal this week. He lost his battle in Sept to Rhabdo and in his Website journal She got this letter below from another woman. I cried as I read this and It is what I think daily. I wanted to share it with you. Take care Love Shawna


"As difficult as this time in your life may be, you will become stronger if you face each day with patience and hope;
if you accept your weaknesses but concentrate on your strengths; if you love and care for yourself even when you are angry and confused; if you can look at doubt and fear but keep your mind on the fact that the struggle is helping you to grow in faith and confidence. If you gently pick yourself up when you fall and continue walking; if you keep thinking about all the things you can do well, all the things that bring you joy, and all the people you love who also love you; if you hold on to your goals even though the way to reach them may be unclear, then...You can see the troubling times almost as friends who have come to help you grow further than you thought you could; friends who are showing you the way to a more courageous heart; friends who help you to see that you are more powerful than you ever thought you were; friends who help you to see that the hard times are making you more open to accepting life as it comes, and realizing that you have the inner strength and loving nature to deal successfully with any difficult moment." -Donna Levine Small

Monday, November 1, 2004 10:59 PM CST

With The Lords Strength and Love I know We will make it through this ugly thing called CANCER.

Halloween night we got all dressed and ready to go to the childrens park for hotdogs and games with my best friend and her family. On our way out the door Dustin says I unlocked the door to the expedition mom. I had a gut feeling he LOCKED the door instead of unlocked (: My purse was sitting in the seat of the expedition with the KEYS!!!!!!! Yep it was locked Needless to say I ended needing to call a lock smith to get the doors unlocked (: That was the beginning of our evening. But once we finally got going we had a really great time together. I cherish every moment these days. My heart Truely aches for Carter Marten's family and now Connor Hunley's family who just lost there little boy yesterday. Please continue to pray for me to be strong for Dustin. Things are fine until I get a moment of quiet time and my heart just aches soooo bad. I need God's Strength upon me.

Dustin felt pretty crummy after Chemo this week. He actually stayed home from school on Thursday after Chemo and Tried to go on Friday but was sent home by the school nurse. She said the Lunch lady saw Dustin throw away his entire lunch at school so she sent him to the nurse. Once home he ate a whole plate of Baby back ribs!!! (: By Saturday he was back to himself. I love seeing him all goofy and fun. I think his blood counts have leveled out and have hopefully come back up. He says he feels fine. Today he went to school and lasted the whole day. Said his day went GREAT! I Love to hear those words!

Rylee had Gymnastics this morning so We had a mother daughter day out today. I took her on a date for lunch. She loves it.

Dustin is getting ready for a big play at school. He seems really excited about it. He sings his songs all day and I mean ALL DAY (:

Have a great night! Talk more later.......

Love Shawna

Friday, October 29, 2004 10:18 PM CDT

Hi Everyone. I know it has been such a long time since I last updated. I appoligize. It seemed like things were not going well for so many of the other children with Cancer I had been following on there website or knew personally. 3 of them have passed away since I last wrote and I found myself living in a state of Fear. I had a hard time reading the websites or even talking about it. I needed some time to really focus on Dustin and my other children to help me through this emotional trial in my life. I had days where I just cried for hours and couldn't sleep.

Things have gotten better over the last few weeks although I still have moments when I just want to break down and cry. Not fully understanding why this happened to our little boy, but with the busy life a mother of 3 has It helps me stay focused on enjoying the moment with my family. We have continued Dustin's normal routine of Chemo every week in Pensacola. He has been back in school as often and he can. We are finding that he is really falling behind in his reading skills since he missed such a critical time the first few months of first grade. This is a struggle we are working through without putting any more stress on Dustin. A friend of his Nana's has offered to tutor Dustin. She has a degree in teaching children how to get there brains stimulated in areas where they struggle. She see's incredible results, so hopefully this will pull Dustin back up to where he needs to be.

Dustin is doing pretty good although Last week they told me more than likely his blood count would be below the level he would need a blood transfusion. This came out of nowhere and was so unexpected I had not donated my blood for him yet and this visit to the hospital I took Dustin by myself for a day out with him. They gave me a arm band to admit him and said they would contact me to let me know a time to come up to the hospital once his blood work came back. I was upset to say the least and prayed the whole hour drive home that his counts would not be as low as they are expecting. 3 hours after we got home I got the phone call that they were surprised to see his counts are fine! Praise the Lord That gave me some time to donate my blood which is a perfect match! I went last Tuesday and did just that! (:

This week after both Vincristine and Actinamycin D his counts are dropping a little and he got a little more tired this week then normal. Hopefully as the weekend continues his counts will level out and he will not need to be transfused this next week. He will get my blood if he does!

Anyhow Halloween is here and The kids and I are going with my best friend to the local childrens park for some fun! They are very excited.

I appoligize for the pictures being all messed up. I couldn't find my camera charger to take more pictures and change the huge one that was on. But I found it tonight so tomorrow I will add new pics for you all to see.

Have a safe halloween. I will update more often now so check back... Talk more later........

Tuesday, October 12, 2004 10:20 PM CDT

As you can see I added a pic of Dustin when he was just 3 yrs old. I loved this picture! He truely is the light of my life! I feel so blessed to have have such a wonderful child!

Today was a rough day emotionally for me. I hope I don't have another day like this for along time! I broke down into tears for many hrs. I really had to pray God would give me strength. It was't because Dustin isn't doing well. He is actually doing wonderful! I am sooo happy to say he is having minimal side effects of Chemo at this time! PRAISE THE LORD! I just had major Heartbreak today for many reasons. But I know I must be strong for him!

We are soooo excited to add the most precious addition to our family. Dustin picked out a beautiful little girl siberian husky named Jasmin! She is red and white. I can't wait to see his face when we pick her up from the airport on Thursday! I will definetly take some pics! She is 3 months old! Rylee Dustin's sister is just as excited.

Tomorrow we have Chemo again, but it will only be Vincristine so hopefully he will not get sick this week! Pray he doesn't. Well anyhow Life is so fragile and when your life is going along smoothly you forget how fragile it really is until you feel like you are hanging from a string and your only hope is your Lord and Saviour. Talk more later this weekend.... Till then..........

Love Shawna Dustin's mother forever!

Friday, October 8, 2004 0:01 AM CDT

Well today was a little rough starting out. Dustin started feeling a little sick late last night and by morning he was throwing up. I went to his school and got his assignments for the day and brought them home. I gave him a zofran (anti Nausea pill) but he threw it up. I waited about 1 hr and went ahead and gave him the other one. It wasn't but a few hrs later that he was feeling so much better and by this evening he is almost back to himself. We finished all his work this evening and got ready for school tomorrow. I think he will do fine.

anyhow all is well otherwise. We had alot to catch up on but it is slowly looking pretty good! We love you all. Take care & I will talk more later....... Love Shawna

Wednesday, October 6, 2004 3:34 PM CDT

Hi Everyone. Well This week has been great. Dustin has been back to school for two days. IT was so hard leaving him there. I walked him to class with lots of stares from the children and then a fire truck pulled up for the kids to get a good look. They got a tour of the truck and I watched from the corner. Dustin saw alot of his friends from last year that asked him what had happened and he told them with no hesitation. It didn't take long for everyone to warm up and he was off with all his buds. When I left him it felt so much harder then when he left for Kindergarten. (: That afternoon I walked up to get him and I said How was your day buddy. (He smiled and Said) I loved it That made my day! The next day was just as good! Special thanks to Alex for being such a great friend to Dustin and helping be there for whatever he needs!

Today was a little different. He started Chemotherapy again. This was week 12 for him! He got vincristine and Actinamycin D So he may feel alittle down this week. We will see! I got a chance to see alot of the damage Hurricane Ivan did while we were gone. It was unbelievable. Dr Kelleher Dustin's pediatric Oncologist completely lost his home. Only a slab left. ):

After our long day today I think we will just relax and spend some time together! Talk some more later......

Sunday, October 3, 2004 10:51 PM CDT

Well Tonight was a little scary for Us. We got Dustin all prepaired to start his first day back at school since he was diagnosed. I am nervous and I think Dustin is to. He had a really hard time falling asleep tonight. It was 10:30 before he finally dosed off. I layed with him for over an hour. He seemed excited and scared about tomorrow.

He is feeling pretty good. His eye seems to be really healing well. His eyelid is opening more and more as the puffyness goes away. I will be glad to go back and see our wonderful Dr Poppel when things settle down a bit this week. Dustin has To start back on Chemotherapy on Wednesday in Pensacola. I sure hope it doesn't get him down.

well it is late so I am off to bed. I will let you know how his day goes tomorrow (: Till then......

Friday, October 1, 2004 1:57 PM CDT

We are home!!!!!!!!!!!!!!!!! Made it in last night around 8:30. It felt sooo good. Dustin kept raising his arm up in the air and yelling WE ARE HOME!!! It was tooo cute. Nana Pop, Grandma, salina and Rylee were there to greet us! Then we went back to Nana's house where she had made Dustin chocolate cookies. He had wanted them sooo bad the last couple of weeks!

Anyhow today is good, I feel like I have my life to unpack today, but I will take it one day at a time. Ben took the kids out for a fun day of shopping and looking for a dog! We are on the hunt for a Siberian Husky for Dustin! Anyhow I just stayed home and unpacked and did laundry then mom came over and we went out for lunch! It was really nice! Then we went to Dustins school and I met his teacher Mrs Leighton. She was very nice and I was very happy to see she had already prepaired the class for Dustin's arrival Monday. Alex (Dustins buddy from last year) is in his class. I know he will be excited! The whole class signed a t-shirt for Dustin. It made me feel better about him going back. I was nervous for him!

Tomorrow is a welcome home party for Dustin at the Edge! It should be pretty fun! I will take pics. I will also add the pictures of St Judes sometime this evening so check back later.

Well enough said for now, just glad to be home. I do miss the ones we got to know at St Judes. All our friends were there for our departure THANKYOU GUYS For the warm Goodbye! Hello to Marie and Brian and families!! We will miss you guys! Will talk more after tomorrows party!!!

Wednesday, September 29, 2004 2:44 PM CDT

Well, we have some exciting news!!!! Things have worked out for us to come home a day earlier. We will get to fly home Thursday evening. YEAH!!!! Our appt today for the dermatologist was canceled due to an emergency the Dr had. We were rescheduled for tomorrow. That puts us really rushing to get to the airport. Sooooo today we packed and cleaned our room for departure. Tonight they are helping Dustin put his handprint on the wall. That is his mark for being here at the RMH! I will get a picture of it for everyone to see!

Today at the hospital it went smothly. Dustin got a picture and autograph from a famous Nascar racecar driver! Then we had a pizza party. It was fun! Otherthan the redness around his eye (Like a sunburn) Dustin is doing really well! He is excited and ready to get home and start school! Monday will be his first day back at school. I am nervous for him, but he seems to be ready!

I will update again when we get home tomorrow. I will also add some of the new websights of the kids I have gotten to know on our journey at St Judes!!!!!! Till then..................

Sunday, September 26, 2004 0:31 AM CDT

Quick Update. Today was sooo much fun. We had a blast at the fair. Kinda costy but well worth it! Dustin held up really well. He was definetly wore out by the end of the evening. The baby didn't make it out of the parking lot and she was asleep. She never woke up. Layed her in her crib and that was the end of her.

As we were walking through the door we heard praise and worship and remembered they were having a service tonight. It was such a blessing. The couple that comes once a month to minister to families Lived here at one time. There 2 day old baby girl was diagnosed with Leukemia and lived her until 2 weeks past her 1st birthday were she then lost her battle with cancer and went to be with the Lord. The family since then comes once a month and brings a spread of food, then a great church service.

I am so excited, I feel closer than ever to going home. We got The Expedition all packed out tonight and ready to go. Ben will leave out before lunch tomorrow so he can make it home before dark. I know he is excited. Dustin Lydia and I will just try and stay busy the next few days awaiting our departure Friday!

Anyhow all is good everywhere else. I feel like I am just beginning to get to know the families here in the home and now we are leaving. Kinda bitter sweet. It's harder when you have a connection with these awsome kids! I really have enjoyed them all.

Ben is taking the computer so It will be harder for me to update, but I will try to again before I leave here. Pray for our week to go smoothly and Quickly!!! Talk Later....

Friday, September 24, 2004 8:36 PM CDT

Well, everything is going pretty good. We are so excited about getting to go home I started packing tonight! (: Dustin is doing great! The skin around Dustin's eye has started getting alittle pink from radiation, but otherwise it is going smoothly.

I have gotten a chance to get to know some of the new families that have just moved into the RMH and my heart cries for them. One family has a spunky chocolate brown eyed little girl named marie. She is a mess and too cute. She is 5 yrs old and just started Kindergarten. They found a brain tumor 6 weeks ago and went in for a biopsy and found that is a tumor that is untreatable YES I said Untreatable They closed her up and said it was inoperable. My heart sank when her mom told me. It just didn't seem like this could happen. She is just so lively. Please pray for Marie and her family. God can do miracles, even for inoperable Tumors! It really made me feel blessed to have the prognosis that our little guy has. I think when things like this happen to someone you love you measure your blessings differently. I wanted to thank Sherry Hubbard for her entry into out guestbook. Stories like hers do give me hope. Thank you Sherry!

I think we will go to the fair tomorrow. Dustin is excited. I am going to try and start a scrapbook of our St Judes memories. I am new at scrapbooking, but have been searching for the right book!

Anyhow I think Ben might come home early this next week and Dustin, Lydia and I will fly home at 2:15 on Friday. Its only a little over and hour flight so it should be pretty easy on the kids.

Dustin had a biopsy of the small little growths that were spreading beside his good eye. The results came back as some sort of wart. I will know more once I go to the follow up appt. on Thursday this week. Really all Dustin has left to do while we are here is get his teeth cleaned, follow up with the dermatologist and finish radiation and we will be set to go.

I will update more as the week progresses. Till then..........

Tuesday, September 21, 2004 7:27 PM CDT