History

Tuesday, October 7, 2008 10:53 AM CDT

This is what we have been doing to continue to fight back, please take a minute to check Dustins new website. Our 1st annual Memory ride November 8th. If you can't ride but still want to participate you can become a Ghost rider.
Also some of the bracelets are posted.

http://dustinsarmyofhope.com/

Sunday, July 20, 2008 6:42 PM CDT

With a very heavy an broken heart I must announce Dustin passed away July 17th at 9am.

The arrangements are as follows:

Tim Stewart Funeral Home
670 Tom Brewer Road
Loganville, Ga. 30052

770-466-1544

Viewing: Monday July 21st 2pm to 4pm and 6pm to 8pm

Funeral Service: Tuesday July 22nd 11am

Sunday, June 22, 2008 2:14 PM CDT

New chemo not so good, Dustin has tumors suppressing his spinal cord again. He is unable to walk and in pain again. He is currently having radiation to several areas, hopefully his counts will be good enough to start chemo again on Monday. I don't have much time to update Dustin demands my attention at this point. I will try to update again soon.

Please keep Dustin in your prayers.

Saturday, May 17, 2008 8:51 AM CDT

Dustin was started on a new chemo, "Gemzar" on his birthday May 7th, this is a 2 week course, he receives Gemzar on day 1 and day 8 he gets Velcade on day 1, 4, 8, & 11 he also is still on Zometa on day 1. He continues the Nifurtimox, Curcumin, IP-6, & Celebrex. He had 5 days of radiation to his head and he done really well. He had scans last week and we have stable disease with little improvements to the radiated areas. Dustin is feeling wonderful and continues to be a happy little boy. I totally trust Dr Sholler and her decisions with Dustins treatments, I KNOW she is fighting for him. Again she is the absolute BEST!!!!!

We will be returning to Atlanta Tuesday May 20th for a short stay and heading back to Vt for the 2nd course of chemo. This will be 2 weeks on chemo and 1 week off, the Gemzar seems to really wipe him out for a couple of days.

Dustin was able to visit Camp Johnson with his Nurse Practitioner Monica last week and he had a blast. I have some pictures I will post when we get home.

I really have to get better at updating this site, sorry to all that are waiting for the updates, Thanks Rhonda for reminding me.

Dustin had a wonderful birthday here; he had 2 parties one at the hospital and one at the Ronald McDonald house, Thank you Vickie for the absolute awesome camo cake!!!! Thank you to Shannon for the Awesome chocolate cake. Thanks to Jenny and everyone at Fletcher Allen for throwing such a great party for Dustin in the Clinic after chemo.

Thank you to everyone that sent Dustin and Bryan Birthday cards they Loved them, The Morgan’s sent Dustin a cool Volcano and he had a blast with it literally. It was so good to hear from Dustins Guardian Angel Shirley from New York We Miss You!!!

I can't possibly name everyone that made Dustins Birthday such a special day so THANK YOU TO ALL!!!!

I will try to update a little better, (Rhonda, Stay on me about it, I need you to. I'll talk to you soon)

Please keep Dustin in your Prayers.

Tuesday, April 29, 2008 10:19 AM CDT

Dustin was discharged from the hospital in Atlanta last Thursday and we arrived back in Burlington Friday, and Sunday Morning around 1am Dustin had another fever so we were admitted again, he is doing well and hasn't had any more fevers, his counts are still very low but slowly rising, so hopefully he will be discharged soon. He is not able to start his chemo this week due to his low counts but he is having radiation to his head all week, and chemo should start next week. Dustin will be turning 10 years old on May 7th his big brother will be turning 15 on the same day, we were hoping to be home for their Birthday, but with Dustins infections these last 2 weeks it is much to dangerous to start his chemo before his counts recover, so looks as if we will be here for an additional week this time. Hopefully we will be home before his Motorcycle run on Saturday the 10th he soooo wants to ride in that. So as far as birthday plans we don't have any yet, but if you would like to send him a birthday card the address to the Ronald McDonald House is:
Room 11
16 S. Winooski Ave.
Burlington, Vermont 05401.

If you would like to send his big Brother a birthday card he is at home missing us like crazy: Bryan Cobb
3630 Stoney Brook Cir.
Loganville, Ga. 30052

Dustin has picked up a new hobby of beading, he has been making his Drs and nurses here badge holders and they are just loving them, he is quite good and has been working on them almost non-stop since he was in the hospital in Atlanta, he really loves Dr Sholler and her team here, and is such a different child when he is in-patient here.
Dustin was on the front page of Sundays paper here with Dr Sholler and a little boy named Jack Brown, The Burlington free press is the paper and a link to it is

www.burlingtonfreepress.com/apps/pbcs.dll/article?AID=2008804270316

Copy and paste the above link to read a wonderfully written story about the trial Dustin is on.

Please keep Dustin in your prayers for continued improvement.

Monday, April 21, 2008 8:00 PM CDT

Dustin has landed in ICU at Egelston with a very low blood pressure and high fever. He is growing a gram negative rod in his cultures. However he is holding his own and they have been able to stabilize his blood pressure and oxygen level, and the fever has gone down. He is very unhappy to be in the hospital. Even as sick as he is, he is already started on the whole staff here that he wants to go home.

Dr Sholler has gotten his results back from Dr Brown in Texas and his tumor will respond to Velcade (Dr Sholler already has him on that) celebrex (she already has him on this as well) she added a natural supplement called curcumin and I P - 6 the analysis shows he has one elevated level in his tumor causing him it to resist chemo and the curcumin should bring this down.
She started Dustin on Rapamycin last month but the analysis showed he would not benefit from that chemo so it has been stopped. He remains on Nifurtimox, cytoxan, topotecan, Velcade, & zometa. He takes the Nifurtimox everyday except Saturday & Sundays and the rest he takes in Vermont every two weeks. We are still Thanking God every day for guiding us to Dr Sholler.

Please Keep Dustin in your prayers for continued improvements.

I will update later this week with Dustins improvements.

Saturday, March 29, 2008 6:54 AM CDT

Big update this time:

Last week Dustin had scans and bone marrow. His scans are still stable but NO Neuroblastoma cells were found in his bone marrow!!!!!!!! This is the 1st time since 2005 he has had clean bone marrow!!! I was not expecting that at all; however what a WONDERFUL Surprise. We Thank God everyday for Dr Sholler and her absolute Wonderful team in Vermont. We do not have results from the Tumor analysis from the Dr in Texas yet. He is continuing on his current treatment, next trip to Vermont will be 4/6 thru 4/15.

Dustin is feeling wonderful!!! His counts are very low right now, but he is very active and wanting to play with his friends soooooo bad. He is such a sweet & silly boy, so strong he really makes his Mom proud.

Dustin Received an American Flag flown in his honor over Camp Eggers in Kabul, in Afghanistan, from Col. R Bouchard. If you could have seen his face when he opened it, looked like he got a Million dollars and those of you who know how Dustin is about money you will know how big this was for him. God Bless our guys in these other countries putting there life in danger fighting for our freedom and they still had time to do this for Dustin. Our Country has Many Wonderful People.

Please keep Dustin in your Prayers for Continued improvements

Tuesday, March 11, 2008 6:35 PM CDT

Dustin is doing really good, he tires a lot quicker than he used to but he is very active.
Dr Sholler gave me some very encouraging news, the tumor that was removed from Dustins head was 75 percent dead!!!! 25 percent live tumor was sent to Dr Brown in TX for analysis to give us more information about Dustins disease and why it is being resistant. We have scans next trip to VT we will be leaving Sunday the 16th and returning home on the 25th. Dustin has been tolerating treatment very well, he has had some low counts the last 2 rounds and has been nutrapenic for 2 weeks after the chemo, but he is feeling good.

Dustin went to school yesterday and today hopefully for the rest of the week, he really loves school this year, his teacher Mrs Sumlin has been a Godsend.

Please keep Dustin in your prayers for continued improvements.

Tuesday, February 19, 2008 8:29 PM CST

We are back in Vermont for Dustin’s next round of chemo; we have postponed Dustin’s chemo for 2 days to give Dustin’s White cells more time to recover. Dustin really wants to go to school but has been unable to attend after the last 2 rounds of chemo because of his low immune system.

Today Dr Vance removed the tumor from Dustin’s head; he was able to scrape it down to the skull retrieving the entire soft tumor. He is doing well after the surgery with headaches we have been able to control with Tylenol 3.
Dr. Sholler is sending the tissue to Dr. Brown tomorrow in Texas to have it analyzed, hopefully it will give her more information about Dustin’s tumor and what we can do to rid his little body of this horrendous cancer and keep it gone. Dustin should start chemo tomorrow and finish on Sunday.

Special Thanks to Dustin’s Chemo Angel Karen for inspiring Dustin so much and always putting a smile on Dustin’s face "Karen you are truly a Very Special Lady!!!"

Huge Thank you goes out to Alden Williams for spending Saturday evening with Dustin; he is still talking about how cool you are. He so enjoyed your visit, you made his week.

Dustin’s teacher this year Mrs. Sumlin has agreed to home school Dustin when he is unable to go to school, he is so looking forward to this.

Thank you Lynn for your dedication to Dustin and your inspiring verses that help keep my faith strong. I think of them often.

Shirley we miss you terribly, Thanks for checking in on us and understanding how hectic life is for us right now. I still have you in my head encouraging & supporting me in Dustin’s Treatment. Dustin says "HELLO"!

Alex, Dustin had a blast with you on Sunday. Thank you for being such a good pal to Dustin.

Kyle, Dustin waits patiently every round of chemo for his counts to recover enough to play soldiers with you, Thanks for looking out for your buddy.

There are so many people that touch Dustin’s life and deserve so many Thanks. Dustin is blessed to have you all in his life.

Please keep Dustin in your Prayers as he marches on to his next round of chemo.

Friday, January 11, 2008 8:08 PM CST

Merry Christmas & Happy New Year!!!!! Dustin is doing great!!! He just finished this round of chemo like a champ. We are flying back to Atlanta Tuesday the 15th, and will be returning to Burlington for round 9 of his current chemo regimen on Jan 27th. He is walking and talking very well now. We all had a Wonderful Christmas and are still having a happy New Year. Dustin got his new BB Gun with a scope and the new PS3, needless to say he was very Happy.

Dustin had scans last month and they were Stable!!!! No progression!!!!! His VMA Level (urine marker to measure activity of Neuroblastoma) continues to drop. We started in July his level was 87 and now he is at 20!!!! Dustin has worked so very hard to get back to feeling this good. He has a very strong will and amazes me everyday. He is such a sweet boy.

Burlington is beautiful, there is no snow here now but last month we had almost 12 inches. It was just like a picture. So clean and untouched the closest we have ever come to having a White Christmas we flew home on Christmas Eve Morning. He started a business at the hospital wrapping presents, he was charging “$1 for the small ones, $5 for the big ones, an no refunds” The wonderful Childlife Specialists, Nurses, and Social Worker all brought things for him to wrap he earned $79 dollars!!!!! What a Special Group of People we have here.

Dustin has been trying to attend school as much as he can; he really wants to go sooooooo badly. I think he feels like a normal kid when he can go. It takes a little while for his counts to recover enough to go. He really misses his friends.

Thank everyone sooooo much for your continued Prayers and support for Dustin, as he marches on in his war with Neuroblastoma.

Wednesday, November 28, 2007 8:48 PM CST

Hope everyone had a very nice Thanksgiving, we did and we have so much to be thankful for.

We are back in Vermont; Dustin is tolerating his chemo pretty well. He had to have a full eye exam Tuesday including dilating his eyes because he is having some eye sight problems. The eye Dr said he was far sighted in his right eye and has stigmatisms in both eyes. He doesn't think glasses will correct the problem. After his eye exam he had a major head ache and was sick to his stomach which made him feel pretty crappy all day. He slept most of the day but got up around 9pm to play with his friend Scott harassing the sweet nurses here. This morning Dustin got up feeling better, and has had a much better day today. Dr Sholler takes such good care of Dustin we are so lucky to have found such a Wonderful and Caring Doctor, Dustin really Loves her. The nurses here are the best. Dustin likes them all, and never complains here. He is talking so much better and walking again too. He is having improvements every day. He is so motivated and happy. It really does my heart good to see him so happy.

It snowed here last night and there is more to come this weekend so maybe Dustin will get a chance to play in it a little. The snow is so beautiful, the people who live here were not so happy to see the snow come so soon, but we were excited to see it, we have barley seen any snow in Ga the last few years.

We will be heading home next Tuesday the 5th of December and returning to Vermont on December 16th for the next round of chemo and an MIBG scan we will be traveling home on Christmas Eve.

Please keep Dustin in your Prayers for continued improvements and a good MIBG scan.

Friday, November 9, 2007 6:37 PM CST

Dustin is doing well, he has just finished his 5th round of chemo, Dr Sholler added a new chemo this time called Valcade it is to make chemo work for chemo resistant cells. He had some arm pain in his left humorus, Dr Wallace is radiating it and after the 1st dose of radiation he has had no more pain. The plan is to do 2 rounds of nifurtimox/topotecan/cytoxan/zometa/valcade and scan again to see what response we are getting from the addition of Valcade.

Dustins Dr in Atlanta will be retiring within the year, however Dustin has no more treatment options in Atlanta other than pallative care, Dustin is responding to his current treatment and his quality of life is so good, there is just no way I can let them put him back into pallitive care.
We have decided to keep Dustins treatment here in Vermont with Dr Sholler I truly believe Dustins best interests are here with Dr Sholler, she is looking into all treatments available and future treatments that will put Dustin back into remission. Since we have been coming here Dustin has been doing sooooooo well. We expect Mountains to be moved in the relapse treatment of Neuroblastoma by Dr Sholler. I can not say enough good things about her. For the 1st time in 7 years I feel comfortable in knowing that Dr Sholler is leaving no stone unturned for Dustin. His quality of life is Wonderful, he is feeling great and smiling everyday. She calls me all of the time to check on Dustin, I have her personal cell number if I ever need to reach her. She has sent Dustins cells off to a pharmacutical company to see if he would benefit from a new onconolinc virus that will be starting in January. She is also testing his cells here in Vermont with other chemo agents to see what his cancer is most sensitive to. Not to mention how much Dustin Loves Dr Sholler, she brightens his day everyday.

The company I work for H & E Equipment has set me up with a lap top so I can work from here and aquire a few hours a day during our 9 days that we are here, they have worked with me for the last seven years of Dustins treatment they are a wonderful organization and the care they show for their employees express that. I would like to send out a huge THANK YOU for the continued support H & E has given me.

We have set up a fund for Dustin and his travel needs, each trip to Burlington, Vermont is $1400.00 round trip so I am going to post his account information for anyone that is able to contribute to help me keep Dustins treatment with Dr Sholler.

************* WACHOVIA BANK ***********************
********** Savings Account for Dustin Cobb ******
********ACCOUNT # 3000103057070**********

Any and all contributions for Dustins Travel will be greatly appriciated.

We set this account up not sure of how to do this but I have to start somewhere. I will be setting up fundraisers soon, if anyone is willing to help with these please contact me.

Please keep Dustin in your Prayers for continued improvements.

Wednesday, October 17, 2007 1:57 PM CDT

Dustin is doing GREAT and feeling soooooo GOOD!!!!!

His bone marrow results are in when we 1st started Nifurtimox his bone marrow was 70% packed with cancer cells, after 3 months of treatment his bone marrow has only 10% cancer cells. His MRI is clear of any tumors in his spine. As I posted before his MIBG scan was stable with some improvement, which is huge because he was progressing ver rapidly when we first came to Vermont. Dustin is responding wonderfully to treatment. This has been a very hard 3 months for Dustin, he has had lots of problems but all have seemed to be resolved. We are currently inpatient at Fletcher-Allen in Vermont receiving chemo and radiation. We will be returning home next week.

Please keep Dustin in your Prayers.

Thursday, October 11, 2007 6:30 PM CDT

A quick update:

We have completed the Nifurtimox trial and had our MIBG scan today, the WONDERFUL Dr Sholler took a look at his scans today and we have no progression even some improvement!!!!!!! We still have bone marrow and an MRI scan left to do tomorrow. Dustin is feeling better than I have seen him feel in months!!!!! We owe this to Dr Sholler she is so positive and optimistic and is willing to fight for Dustin when his Drs in Atlanta have clearly given up. Dustin has been so pleasant to all here in Vermont his attitude is soooooo much better. He is truly a fighter and intends on winning this war one battle at a time.

Please keep Dustin in your Prayers as he marches on in his battle with Neuroblastoma.

Saturday, August 11, 2007 11:50 AM CDT

This will be a quick update, Dustin is feeling sooooo much better,while we were here they found 2 tumors in his spine, one in the upper spine the other in his lower spine (lumbar area) he has had 5 days of radiation on both spots and both have reduced signifigantly. The tumor on his skull (not in the brain) had swollen to about the size of half of a baseball, and before he started the chemo the tumor was dying from the nifurtimox alone which is really good news since Dustin is one of the first to be on the higher dose levels. At this dose level it has caused the tumors to swell as they hemorage and die, however this caused Dustin a great deal of pain. He has had his week of chemo which included cytoxan & topotecan, he was put on mesna continuously and so far there have been no signs of blood in his urine.

He is feeling much better now, I will try to update again soon.

Please keep Dustin in your Prayers.

Saturday, July 28, 2007 7:59 AM CDT

Long time since my last update so I have a lot, We traveled to Vermont did scans (did not look good at all) and bone marrow the 1st week and boy was Dustin feeling good, Dustin had 19 pain free days!!!!! His pain started in his left leg, on Friday night(day 19). On Monday he went to clinic and saw Dr Sholler, I have never seen a Dr get his pain under control so quickly. She had him seen by Dr Wallace, simulated (CT Scan to see the problem area) and started radiation on Monday (and did radiation everyday all week), the next Morning (Tuesday)Dustin was up and walking still a little slow and by Wednesday he was pain free no pain meds until we returned home and last Tuesday night he started hurting in his right leg and the middle of his back. I contacted Dr Scholler in Vermont and the clinic here at Egelston on Wednesday, they got Dustin in for a simulation(CT Scan to see the problem area)and a single dose of radiation to his leg only on Thursday. On Friday Dustin started having the severe pain in his mid-back so bad he has been screaming out in pain. Dr Scholler has us flying back to Vermont on Sunday the 29th instead of the 31st as originally planed. So she can once again get Dustins pain under control. Dr Scholler is one of the most Caring & Positive Drs I have ever met.

While we were in Vermont one of Dustins Nurses arranged for him to visit the Air Guard base, he got to see the F-16 take off and land, he also flew in the simulator and was shown the base by a soldier named "Thork" (his flight name). Dust met the Thunderbirds and was driven out onto the runway to watch them take off as they headed back to Las Vegas. Our Military are the absolute best. Dustin just Loves them.

Dustin is on day 13 of the Nifurtimox, he will have scans and bone marrow again next week and on day 22 of the Nifurtimox he will start his chemo & Zometa inpatient in Vermont the chemo will run for 5 days (Please pray this works for Dustin).

Thru all of this pain Dustin has insisted on going to daycare to see his friends, Ms Sue and Ms Kathy are 2 of the most Loving women you would ever meet, they have let Dustin come to daycare and administer his medications so he can see his friends. Big Thanks to Ms Sue and Ms Kathy we Love you guys!!!!!

Dustin will not be starting school on time, and we were unable to attend open house last night because Dustin is just in to much pain. Mrs Nash, Byrans 3rd grade teacher called me while we were in Vermont and asked me if she could buy the boys school supplies. What a Huge help that was, I haven't had a chance to do much of anything but work and care for Dustin a Huge thanks to Mrs. Nash.

I am sure I have other things that I have missed that I need to update about so I will try to update again before we leave tomorrow.

Please keep Dustin in your Prayers.

Thursday, July 5, 2007 7:34 PM CDT

Dustin had to leave Camp Sunshine on Tuesday, he developed a fever and had to be admitted into the hospital for 5 days. His culture grew a gram negative bacteria, this is not good, the bacteria was in his port so the antibiotics had to be ran thru the port. He was release from the hospital with home health care so I could administer the antibiotics at home. As everyone knows Dustin is not a big fan of going in-patient especially when he had to leave Camp Sunshine poor baby was and is still so upset that he had to leave, he was having so much fun.

"Special Thanks to Alex, his Mom and Dustins Uncle Andy for visiting Dustin while he was in the hospital you guys really brighted his day Thank You!!!!"

I went to the Neuroblastoma Conference last weekend and met some really Great People. I have been watching the Nifurtimox trial since last September and since Dustin is having so many problems with the VP-16 Dr. Scholler wants to enroll him in the study even with the less than 50 platelets. We have to travel to Vermont for 2 weeks for scans and the 1st week of Nifurtimox. We had several Neuroblastoma specialist speak at the conference and all of them were very positive. I had the pleasure of actually discussing Dustins case with Several of the Drs and they all had suggestions for Dustin, the one they all had in common was he needs to be put back on Zometa to help with the bone pain. Speaking of pain, we have been so blessed to be on day 11 so far with no pain. This trial has had response in almost every patient some short term but some are long term. The trial consist of Nifurtimox day 1 thru 21 Topotecan day 22 thru day 26 and Zometa on day 22. We will be arriving in Vermont on Monday 7/9 10:30pm and returning 7/20 11:00pm. I am not sure what computer access they have there so I will update if possible while we are there.

We Really Need Extra Prayers for NO pain as we prepare to attack this cancer again.

Sunday, June 24, 2007 6:33 PM CDT

Dustin is at Camp Sunshine!!!!! He has had a rough couple of weeks, Dustin made it to day seven last round before he started having some pretty bad pain in his arm (not as bad as the leg pain, but still pretty bad). However he was very determined to make it to vacation Bible School with Our Wonderful Daycare the 1st week of chemo. He managed to make 4 out of 5 days with the arm pain. The pain started to resolve on day 6 of chemo. This was a better off period for Dustin. Praying for no pain next round.

Then Mr Dustin landed in-patient at Egelston Last Tuesday. He is having problems urinating again. He was released on Wednesday and has been working hard at keeping that bladder flushed. He felt good enough Friday to go play, but by the time I got home from work it was too late, so he called his friend Alex and arranged to play with him on Saturday. He played all day and still felt good.

Ok enough of the pain crap, he is feeling good today and has felt good the last 3 days. When he feels good he enjoys every minute of the day. Today is day 13 of his chemo and he is so excited about camp. I of course will miss him like crazy, but am Hoping & Praying he continues to feel good all week.

Please keep Dustin in your Prayers.

Saturday, June 16, 2007 7:34 AM CDT

Today is day 5 of Dustins chemo, he did not have any pain until Monday which was day 7 off of chemo, his pain started in his right arm, and his left leg followed. Pain medication & chemo was started on Tuesday, as of last night he was still having severe pain in his arm and some pain in his leg. He is still sleeping this morning and I am praying he will wake up feeling better. His clinic visit was Wed and he did not need any blood products!!!! His next visit will be Monday. Dustin is such a fighter, and handles this pain better than I ever could. It just rips my heart out to see him hurting and I can't stop the pain.

Please Pray for Dustin to be Pain free.

Friday, June 8, 2007 6:32 PM EST

We have just gotten home from Dustins clinic visit, He had a unit of Platelets and a unit of red blood so it was a very, very long day. The Good news is today is day 4 off of chemo and so far he is feeling good and no signs of pain. After his 1st round he started having leg pains on day 4 and by day 6 he was in horrible pain. He started Celebrex 200 mg 2 times a day on May 30th and has felt really good since. I Hope and Pray that this makes a difference and he will remain pain free and feeling good when he starts chemo next week.

Please say an Extra Prayer for Dustin this week-end that he remains pain free.

Sunday, June 3, 2007 11:59 AM CDT

Dustin has started Celebrex, he started Wed and so far no side effects other than he is feeling really good, outside playing and running around. He did have to have some platelets on Wed but other than that he seems to be doing well. Dustins 7 days off will start on Tuesday, please keep him in your Prayers that he will remain pain free.
In case you are wondering about adding Celebrex to Dustins current treatment of oral etoposide (VP-16) below is the research from Sweden. Dr Alvarado says they are currently running adult trials using Celebrex that are showing some promise. The benefits outway the risks so we are giving it a shot Hoping and Praying it will give the etoposide the helping hand it needs to rid Dustin of this Cancer.

1: Clin Cancer Res. 2007 Feb 1;13(3):1036-44. Links
Celecoxib prevents neuroblastoma tumor development and
potentiates the effect of chemotherapeutic drugs in
vitro and in vivo.Ponthan F, Wickstrom M, Gleissman H,
Fuskevag OM, Segerstrom L, Sveinbjornsson B, Redfern
CP, Eksborg S, Kogner P, Johnsen JI.
Childhood Cancer Research Unit, Department of Woman
and Child Health, Karolinska Institutet, Stockholm,
Sweden.

PURPOSE: Neuroblastoma is the most common and deadly
solid tumor of childhood. Cyclooxygenase-2 is
expressed in clinical neuroblastoma tumors and cell
lines and inhibitors of this enzyme induce apoptosis
in human neuroblastoma cells in vitro and in
neuroblastoma xenografts in vivo. We hypothesized that
the cyclooxygenase-2-specific inhibitor celecoxib
could enhance the cytotoxic effect of chemotherapeutic
drugs currently used in neuroblastoma treatment.
Furthermore, we investigated if prophylactic treatment
with celecoxib could prevent neuroblastoma tumor
development in vivo. EXPERIMENTAL DESIGN:
Neuroblastoma cell cytotoxicity of chemotherapeutic
drugs in combination with celecoxib was examined. In
vivo, athymic rats carrying established SH-SY5Y
xenografts were treated with celecoxib in combination
with irinotecan, doxorubicin or etoposide, or with
either drug alone. For prevention studies, rats
received celecoxib in the diet, 250 to 2,500 ppm, from
the time of tumor cell injection. RESULTS: Celecoxib
induced a synergistic or an additive cytotoxic effect
in combination with doxorubicin, etoposide, irinotecan
or vincristine in vitro. In vivo, treatment with
celecoxib in combination with irinotecan or
doxorubicin induced a significant growth inhibition of
established neuroblastoma tumors. Rats receiving
celecoxib in the diet showed a distinct dose-dependent
delay in tumor development compared with untreated
rats. Plasma levels of celecoxib were comparable with
levels obtainable in humans. CONCLUSIONS: Celecoxib
potentiates the antitumor effect of chemotherapeutic
drugs currently used in neuroblastoma treatment, whichargues for clinical trials combining these drugs.
Celecoxib could also be a potential drug for treatment
of minimal residual disease.

Please keep Dustin in your much needed Prayers.

Sunday, May 27, 2007 8:15 AM CDT

Friday another long day at Egelston getting a big bag of red blood, Dustin seems to feel much better with more energy. He went outside and played with his friend Kyle yesterday. He has had NO pain medication in 2 days now "yippee!!!!!". He has 1 more week of chemo before he starts his 7 days off which scares me to death, last round on day 4 of no chemo he started having leg pains and by day 6 he was in so much pain he could not walk, it has taken us almost 2 weeks to get rid of his pain. I look forward to having this pain free week next week and praying hard the chemo will keep this beast under control while he is off for 7 days.

Dustin will have another clinic appointment with Dr Alvarado on Wed, we are looking at adding maybe Celebrex to his treatment (in a Sweden trial Celebrex has shown an anti-tumor effect when given with certain chemos) maybe this will give his chemo a helping hand.

Please keep Dustin in your Prayers as he Marches on in his War.

Monday, May 21, 2007 7:48 PM CDT

Dustin had his appointment today with Dr Alvarado, he is not up walking around yet he is still in his wheelchair but his pain is decreasing. He is down to 2 doses of pain medication a day for the last 2 days. Soon he will be up and about again. Dustin had to have platelets today and will probably have to have red blood on Friday (Dustin hates having transfusions) These trips are becoming somewhat challenging with Dustin.

I will update again soon.

Please keep Dustin in you Prayers.

Thursday, May 17, 2007 2:26 PM CDT

Dustin is having a hard time right now with leg pain, he hasn't walked since Sunday morning, he started his chemo back up on Tuesday and started radiation on his right leg to help the pain. He appears to be responding and getting some pain relief, I have been able to decrease his pain meds a little bit since yesterday, and today he is playing his XBOX 360. Dustin was in so much pain Monday when he saw Dr Alvarado and kept telling him he was not coming back on Wed because he was going to field-day. He was so wanting to participate in field-day he was so excited, Dustin was in no shape to attend school yet, he has been so out of it on his pain meds that he has just realized that he missed it. Hopefully he will continue to respond and be back in school Monday. Dustin has Blood Counts tomorrow and his last dose of radiation. Taking one day at a time praying for improvements each day.

Please keep Dustin in your prayers.

Saturday, May 12, 2007 8:39 AM CDT

Dustin and Bryan had a wonderful Birthday!!! They both chose a trip to Six Flags over Ga instead of a party and they had a blast. Dustin walked the whole day from 12pm to 9pm and still had energy (as for me I was pooped)!!! I have pictures and will post them soon.

Dustin completed his first 21 days of oral VP-16 and is feeling great, he is now in the middle of his 7 days off. He did have to have red blood yesterday and was still a little tired afterwards but I took both boys to dinner and to see Delta Farce, Dustin laughed thru the whole movie (I just love his laugh!!!)

Dustins next round of chemo will start on Monday for the next 21 days and with the Blessings of God he will continue to respond. We are taking 1 day at a time with this treatment and Praying like crazy other treatments will come out that will rid him of this horrible cancer.

Please keep Dustin in your Prayers as he continues to fight his 7th year of this battle.

Saturday, April 28, 2007 12:16 AM CDT

Long time since my last update, I am sorry we have had a hard month, I always try to keep this site positive and I have just not been up to updating. I am sorry I know you all Love Dustin and want to know what is going on, I will try to do a better job.

Dustin was able to go to school for a couple of days after his last round of high dose chemo, and again it knocked the crap out of his blood, but it also kicked the cancer back, but just as his blood was recovering he started having severe pain again in his Right leg, almost overnight, from no pain to you couldn't touch his leg and he could not walk at all. He was started back up on his pain medicine full dose 2mg hydromorphone (dilaudid) and 25mg fentanyl patch. Dustins bone marrow is so tired we opted to try ORAL VP-16 (I think everyone knows how scared this ORAL stuff makes me) To my complete surprise (THANKING GOD EVERY DAY) after day 4 we saw some relief from the pain. On day # 7 of the Oral Chemo Dustins Platelets were 47,000!!!!! red blood 9.6 ANC .64 It took 3 months with no chemo to get the platelets this high before the 3F8 anti-bodies (praying this is the HAMA helping his bone marrow)on day 11 his platelets fell to 38,000 (still not low enough for transfusions) his red 9.2 ANC 1.53. These counts are still good remember he is taking chemo every day, today is day 12 and HE IS PAIN FREE!!!!! He has another blood count on Monday, after that I will be trying to get him back in school (desperately trying to make life as normal as possible for him) after not being in school for so long he does not want to go, but after he goes for a couple of days he enjoys it.

Dustin is having his 9th Birthday and big brother Bryans 14th Birthday on May 7th, yes my 2 babies were born on the same date 5 years apart. Dustin has been battling Neuroblastoma since he was 2 years old. What a soldier he is, he should be awarded a Metal for all the battles he has WON.

Please keep Dustin in your Prayers as he marches on in his WAR, beating battle after battle eventually he WILL WIN THIS WAR!!!!

Saturday, March 24, 2007 8:12 AM CDT

We arrived home without incident Sunday night, Tuesday morning Dustin woke up with some bad leg pains in his right leg above his knee, which prompted a call to MSKCC & Dr Alvarado. MSKCC said he was too far out of treatment for the antibodies to be causing this pain, Dr Alvarado scheduled a bone scan, & MIBG. The pain started to decrease on its own by Friday and by Monday he was pain free. We did the MIBG scan on Wed and while Dustin was laying on the scan table his left leg just below the knee started hurting, so Dr Alvarado scheduled radiation to this area, during the second day of radiation the pain went away but started back up in the right leg again above the knee, the pain was pretty severe we started 2mg of dilaud every 4 hours adding the fentenyl patch for continuous coverage, we started the chemo back up and scheduled radiation for his right leg. He has now completed the chemo ad radiation and appears to be in minimal pain. His smiles and personality is coming back as I try to wean him off of these powerful pain meds. He is up walking again. The scans showed no new lesions and was deemed stable, however the spots that were lit up did seem brighter than before but the Drs do not call that progression, but I am assuming that was where the pain was from. I also got the news from MSKCC that he once again has a HAMA (no more antibodies until it is gone, which could be several months, last time it took 18 months)
Dr Alvarado wanted to give Dustin oral VP-16, but I requested we do the high dose first(to knock the cancer down) then start the low dose oral chemo (to keep the cancer down). The low dose oral stuff SCARES me to Death, but I am having to take into consideration that Dustin has had a lot of chemo and his bone marrow is weak, and the high dose stuff is kicking the crap out of his bone marrow. So I am Praying really hard that with the antibodies on board this will help the chemo work and give his bone marrow a much needed break. I believe Dr Alvarado may want to start the oral VP-16 next week.

Please PRAY for Dustin as he marches on in this horrible!!! unfair!!!! and painful!!!! world of Cancer. He is gonna beat this beast with the power of Prayer with him.

Wednesday, February 14, 2007 5:08 PM CST

HAPPY VALENTINES DAY!!!!

Dustin has had a pretty good week with only mild pain from the antibodies, he has had pain after returning to the Ronald McDonald House in the evenings and has been sleeping ALOT. If I wake him up by talking on the phone he turns very angry with me. His counts continue to be very good, his platelets are slowly rising on there own at 45 his red blood count is 12.1 his white count is 6.9 his ANC 3.1!!!!! Of course the pain in the evenings worry me because the pains are all where he has MIBG light ups (even though the pain is one of the known side effects of the treatments)he is having enough pain in the evenings to have pain medications but he seems to be fine and feeling good in the mornings.

We have had lots of ice here today, after treatment I pushed a knocked out Dustin 5 blocks back to the Ronald McDonald House in an Ice Blizzard I could barely see. The side walks are very slippery but luckly we made it back with out incident. It is supposed to be the same tomorrow, of course Dustin wants to throw snow balls at me but I explained to him that this was not snow but ice. So maybe we will get some of the soft snow tonight and he can bomb me with snow balls tomorrow.

We are planning on returning to Atlanta on Sunday however the only flight we could get leaves here at 5:54pm arriving in Atlanta at 9:47pm. Looks like lots of flights have been cancelled here due to the weather, we are hoping it will clear up by Sunday.

Please keep Dustin in your Prayers that this treatment works.

Saturday, February 10, 2007 3:12 PM CST

What a week!!!! Dustin has been inpatient at MSKCC, he spiked a high fever after the 1st round of antibodies and after the 2nd round he spiked up to 106!!!!! He was then admitted on Tuesday. They did not do the 3F8's on Wed and his temp returned to normal. We resumed treatment on Thursday and 5 1/2 hours after the treat ment ended his fever started to rise again. The Dr came in and told me he would probly have to have his port removed the following day. As I was praying for the fever to go back down, I thought what would be wearing off from the treatment in 5 1/2 hours?? He did not have any fevers during treatment what had changed??? He gets Benadryl, Tylenol (which he has had every 4 hours since his fever started without much reduction), diladed (sp?), the 3F8's. I grabbed the Benadryl out of my purse and the dosage read give every 4 to 6 hours as needed so I thought it can't hurt, by this time his fever had risen to 103. I gave him 1 dose and 30 mins later his temp was normal!!!!! I stayed up all night and made sure he had his benadryl every 4 to 5 hours depending on when his temp stared rising, and sure enough his temp stayed within the normal range and we were discharged yesterday.

The treatment has been very difficult to say the least this time, Dustin has had severe pain after dose 1. I was very worried after dose 1 he didn't appear to have the pain associated with the antibodies (3F8's) attaching to
the GD2 markers (on the cancer cells and Nerve endings) the 2nd dose produced the horrible pain showing us that the antibodies were attaching. So with the graces of God they are working.

Dustin now has a 2 day break before his next battle starts on Monday. He again is using his military to battle the cancer. His ANC is 2.6 Friday morning the highest I have seen it since September, this is his military building up for the fight.

I will update again tomorrow, Please keep Dustin in your Prayers to continue to be a Strong and Brave Soldier.

Saturday, February 3, 2007 9:54 AM CST

Dustin is doing well, no pain (Thank God!!!) & full of energy. He has to drink a bottle of Beta Glucan everyday, it is different than the last time. The beta glucan he drank before was made from barley, this time it is made from yeast and the consistancy is like slime, the 1st day was the worst he cried and had a hard time getting it down without gaging, but the last 3 days he has had an easier time, it takes him about 30 mins to drink it all but he does it like a champ. Dr Kushner said that they have had a much better response fron the yeast than the barley. He will have his first infusion of the 3F8 antibody on Monday Praying he tolerates it without too many side effects. Of course the worst side effect is the horrible pain when the antibody attaches to his nerve endings which also has the same GD2 marker that the cancer has which is what attracts the 3F8. Again Dustin is marching forward with no fear of this treatment.

Dustins friend Shirley brought him a game for the Play station 2 "Call Of Duty 2" he beat it in 2 1/2 days. He is a very good soldier he is a very good shot.

I will update again on Monday after the treatment, Please Keep Dustin in your Prayers.

Sunday, January 28, 2007 12:52 AM CST

We are in New York, Dustin had to have his bone marrow drawn again Friday, up here they draw 2 samples from the front hip and 2 samples from the back, so needless to say his little back is hurting him, he just had marrow drawn from his back a week ago, but it was necessary to do it again here because MSKCC has very specific test they have to run in order to administer the 3F8's.

Dustin will have an echo on Monday, then he will start the beta glucan on Wed and the 3F8's will start the following Monday. Dr Modak is pretty sure Dustin will HAMA (Human Antibody vs Moniclonal Antibody) after the 1st round as he did last time, we will be blessed if he could get more than one round but we will take what we can get. His bone marrow that was drawn in Atlanta came back one side is 10% Neuroblastoma and the otherside was 30%, this was an improvement from 50% on both sides. His MIBG scan was stable with slight improvements. His counts are still low so maybe with the chemo break his bone marrow will have time to get a little stronger. Praying the cancer will not take off before he can get the 3F8's into him. 3 weeks after the 3F8's he will return to MSKCC for scans and Bone Marrow again. The only other options we have at this time due to his low counts would be low dose oral chemo again, which has not worked in the past. Dustin is a strong little boy PLEASE pray for his continued improvements and that the 3F8's kick some Neuroblastoma butt.

Currently Dustin is feeling well other than the back pain from the 2 bone marrow draws. Today his back is actually feeling better as he is following the pigions around walking like them, he is soooooo funny.

Please say an extra Prayer for Dustin, for I truely believe he is a walking Testament to the Power of Prayer. He is our Soldier as he marches on fearless of these treatments. His attitude is bring it on!!!!

I will try to update again tomorrow after his echo.

Tuesday, January 23, 2007 5:24 PM CST

Dustin has had bone marrow drawn last week(I do not have any results yet), he is having his MIBG scan tomorrow( I will be in the room so hopefully I can see a big improvement on the screen), along with a very long CT scan. We are scheduled to leave on Thursday heading back to Memorial Sloan Kettering Cancer Center for another round of 3F8 antibodies. Dustin is now going on 5 weeks with out chemo, and is not having any visible symptoms Thank God.

His counts are really struggling to recover he had to have both red blood and platelets last Friday. He had 24 days of GCSF injections before his ANC recovered, after we stopped the injections his counts took a dive from 1.55 on Tuesday to .32 on Friday (a drop is expected, I was just very surprised it dropped so low) I am Hoping and Praying this is still the side effects from the chemo and not the disease in his bone marrow. We have not scanned him since September so needless to say I am very anxious to have him scanned. Last time we had 3F8's it really cleared a lot of his bone marrow (which was 50% cancer cells in September). We will be very blessed for the same results. I am still holding out for more than 1 round in Dustin. Last time he developed a HAMA after the 1st round and kept that HAMA for 16 months.

I would like to give a Huge Thanks to Thelma Westerly, Shirley Cox, and Gwendolyn Ashley for their hard work in acquiring transportation for Dustin and I to New York. Shirley is a very powerful Positive influence for me, and has been for years now, Thank you Shirley for all of your encouragement. There is not enough Thanks in the World to give to these Wonderful Selfless Ladies.

Dustin has now been enlisted in The National Guard for 3 months, he received his 1st promotion last weekend. He has a really Great Sargent Major who stays on top of everything, he plans things for Dustin quite often and of course you know Dustin just Loves it.

Can you believe it I actually updated the pictures.....

I will try to do a better job of updating, I am so sorry, it has been non-stop hectic here since the 1st of the year.

Please say an extra Prayer for our little Warrior.

Monday, January 8, 2007 1:30 PM CST

DUSTIN IS HOME FOR THE 1ST TIME THIS YEAR!!!

Dustin had a very challenging week, He had a fever that was going up as the New Year was coming in he had fevers of 104 at times. We went to the emergency room 1:30am-2:00am on Monday morning and stayed in the ER until 7:30am when we got to his room. He was bleeding from his gums and urinating blood and clots again also his red count was so low they were having problems getting his blood pressure up to a safe level. After a transfusion of platelets and red blood cells it seem to resolve all of the bleeding & blood pressure problems. Dustin was feeling so much better on Tuesday, he was up playing, and laughing then Wednesday Morning he woke up in horrendous pain right over his bladder, but Dustin told the Drs that this was not his bladder this time, it took 2 doses of morphine to get his pain under control they took x-rays, ultra sounds and CT scans and could not find anything abnormal, he had a little fluid in his abdomen area but everyone has a little fluid there. He was improved on Thursday and Friday by Saturday he was in no pain at all. This episode has no diagnoses the Drs are stumped. Today Dustin is feeling good and OH SOOOOOO Glad to be out of the Hospital.

I will update Dustins pictures soon.

Please keep Dustin in your prayers for continued improvement.

Monday, January 1, 2007 7:05 PM CST

Happy New Year!!!!

Dustin brought the New Year in with a fever of 104 and is now in the hospital until his counts recover. His fever began between 11:30 & 12:00 last night which propted a call to the on-call oncologist which directed him to the emergency room. His counts were horrible red count was 6.0 which has caused his blood pressure to drop to a dangerous level, his platletes were non existant which caused his mouth sores to bleed and he was urinating blood again. Needless to say he received blood and platelets today along with 2 antibiotics and will continue to receive these antibiotics until he has an ANC, hopefully this will be soon, Dustin does best at home. Dustins dad is at the hospital with him tonight so I can get some much needed sleep. I will be there after tonight. I will keep this post short since I haven't slept since Sat night and am not sure if I am even making since.

I will update again as soon as possible, Dustin is in room 365 at Egelston, PLEASE keep Dustin in your PRAYERS for a speedy recovery.

I have lots of new pictures and Christmas stuff to post, I will have to do it later. Also his room has been finished and he stays in there all of the time. Big THANKS to Linda, Michele, Ronald & Andy for all of their hard work!!!!!

Saturday, December 16, 2006 7:44 AM CST

Dustin had counts on Monday, he was in need of 2 bags of red blood and 1 bag of platelets (a mix for a loooooong day at the hospital)his ANC was up just enough to return to school .56 (has to be at least.50) Dustin was sooooo happy to return to school and be a normal kid for a couple of days. He returned for counts on Friday and had an ANC of 2.56!!!!! Go bone marrow!!! His red count was 11.9 platelets were holding out at 30. His platelets and red blood are both neglected by his stem cells when he is receiving his GCSF injections (this shot encourages his stem cells to produce white cells to raise his ANC) we stopped the injections Thursday so hopefully his platelets will hold their own and his ANC will continue to be high enough to start his chemo on Monday (Round 4). Still no scan schedule yet hopefully it will be soon.

Dustin has 2 full trees on his Lunch for Life CHRISTmas Tree!!!!!!!:

http://www.lunchforlife.org/giving_tree.aspx?cid=36

This means Dustin has raised over $5000.00 for research on Neuroblastoma!!!!! The whole group of trees have raised $177,977.00!!! We need $650,000.00 to fund a promising 3 year trial. This is such a blessing because we desperately need funding for new treatments, I keep up with several web sites of other kids with Neuroblastoma and it just rips my heart out that these kids fight soooooooo hard for their life and they get to a point their Drs have to tell them "I know they have bounced back in the past but we have NO OTHER TREATMENTS to offer" This term is something you NEVER want to hear when you are watching your baby playing like nothing in the world is wrong with them, and with no treatment the cancer runs wild until the pain sets and they have to start the horrible road of pain medicine. This is so unfair these kids deserve better "LIFE IS THEIR RIGHT!!!"

Dustin has defiantly noticed that Santa and Mrs Clause has visited his tree and brought the elves and reindeer, this has just tickled him silly!! He does believe they all hung ornaments on his tree to help his Drs find a cure for his treatment. We are so blessed to have Dustin for Christmas and hopefully many, many, more. This time last year Dustin was beginning to have massive pain from the cancer progression and with the Graces from God he started getting relief around the 1st week in January.

Thank you all for your Prayers and Donating to Dustins CHRISTmas Tree, I could not think of a better way to spend $5, than to help save these kids life. With Funding and Prayers we can find a Cure!

Please keep Dustin in your Prayers for continued improvements.

Tuesday, December 5, 2006 9:34 PM CST

Dustin has filled his 1st Tree!!!! A 2nd has been started, he has raised a lot of money, over $2500.00!!!!! Dustin says "Thank you!!!" in just 5 days he filled his 1st tree, he said "a lot of people must like me mom" I told him "you got that right, there are a lot of people that Love you very much and want you to get better very soon."
As of right now Lunch For Life has raised $117,713.00 since September 1st (65 days). Please visit the site:

http://www.lunchforlife.org/funding.aspx

and read all of the much needed Neuroblastoma research they have and will continue to provide grants for.

Dustins 2nd tree: (the present underneath represents 1 filled tree.)

http://www.lunchforlife.org/giving_tree.aspx?cid=36

Dustin is feeling good again!!!, yes even with low blood counts he is bouncing off of the walls. His ANC was .19 it needs to be .50 or better to start round 4 of his chemo next Monday, (so we may be postponed for a week again) I am grateful we have something more than 0, this is a good sign he is on his way up. He did have to have a Platelet transfusion on Monday they were less than 10, and his red count dropped from 10 last Friday to 8.9 on Monday. We do not have a scan schedule yet, hope it will be soon.

Please keep Dustin lifted in Prayer for continued improvements. He is truly one of Gods little Soldiers.

Friday, December 1, 2006 6:42 PM CST

Dustin had an event free Clinic visit today, his red blood is at 10.0, platelets at 25, and his ANC is still 0. Dustin is feeling good and bouncing off of the walls again, his mouth sores are almost gone and his appetite is picking back up, however his clock is still way off he continues to stay up until 2 & 3 in the morning, hopefully we can resolve that soon.

Dustin has a project he is working on, Lunch for life this foundation directly funds Neuroblastoma research. Neuroblastoma is the most common solid tumor in children but only 650 case are diagnosed each year, thus has VERY low funding for research. This year Lunch for life has set up Christmas trees for each child, each tree holds 500 ornaments each ornament is $5 the cost of 1 lunch. Each tree he fills up he will have raised $2500 for much needed research. Lack of research funds is a horrible reason to not have more effective treatments for these kids. I understand ONLY 3 new trials opened this year for Neuroblastoma.... We can do better than that, our kids can not wait we desperately need funding. As Nick Snow (a fellow Neuroblastoma warrior) said "Life is his right, he will not give up the fight!!" Dustin is asking that you please donate 1 lunch and add an ornament to his tree to help his Drs find a cure for his cancer. We have been promoting his tree for 2 days and he already has 211 ornaments!!! He has me checking his tree every 5 mins to see how many he has now. There is no doubt in his mind that he will fill his tree up.

http://www.lunchforlife.org/giving_tree.aspx?cid=36

Thanks to you all for your continued Prayers and Support.

Tuesday, November 28, 2006 2:45 PM CST

Today Dustin received platelets and Red blood, he is starting to have reactions to the platelets, so he will now have to have pre-treatment meds before any future transfusions. Dustin has an ANC again of 0, he seems to be quite fatigued the last 2 days not bouncing off the walls like the Dustin we all know. His red count was pretty low 6.3 I was hoping the red blood would pep him up more I am assuming the pre-meds are making him a little tired too. Tomorrow I am sure he will be back to bouncing off the walls. He had his chemo last week, he has had a few tummy problems and mouth sores (if his tummy has sores in it like his mouth does that is probably the problem).

Dustin & Bryan spent Thanksgiving with his Nana and Grand-dad, they both had a wonderful Thanksgiving.

Please keep Dustin in your Prayers.

Monday, November 20, 2006 8:46 PM CST

Dustin started round 3 of the carboplatin & VP-16 today, his ANC took another dive and dropped from 1.36 to .56, his platelets were up a little bit to 36 (low side of normal 175)and his red count is 9.6 (low side of normal 11.5) all counts are low but he is already 1 week late starting the chemo, so Dr Alvarado and I thought it best to go ahead. Dustin has amazed his medical team again and after 2 rounds of chemo and an ANC of 0 he has not ran a fever that would cause him to be admitted. Hopefully MIBG scans will be running again soon, there is a problem with the production of the MIBG formula (which only lights up for Neuroblastoma).

A lot has been going on since my last update, SGM Weeks took Dustin to meet the Gwinnett Gladiators (Hockey Team) then they visited the Armory up in Winder where Dustin got to check out the Choppers and shoot a gun simulator, then they had Pizza at SGM Weeks' Italian Restaurant then Dustin visited the Monroe Police Department and was sworn in as the Chief of police, next they went to Walton County Sheriffs office and was sworn in as a Deputy. Dustin told me he had a new best day ever. Our National Guard has really been good to Dustin, it has really helped get him thru his treatments. I have always known Dustin is a warrior now he has the official titles.

Yesterday Dustin had 3 visitors, Master Sgt. Dan Summers (who is just back from Iraq), Marty Harrell (retired Marine) who brought his real sword for Dustin to see (he is still talking about that sword), and retired Navy Officer they brought Dustin ribbons and all kinds of decorations for his uniform, he looks like a mini- soldier!!!! Our Military guys as tough and bad as they are have the BIGGEST hearts. The things they have done mean the world to Dustin.

Construction of Dustins army room has been started Uncle Andy and Aunt Linda began painting this past weekend, Dustin is so excited to finally have his own room.

We have chemo thru Wednesday Hope everyone has a Happy Thanksgiving, I know I have a lot to give Thanks for.

Please keep Dustin in your Prayers for continued improvement. Dustin is a True Testament to the power of Prayer, Thank you Prayer Warriors!!!!

Tuesday, November 7, 2006 1:55 PM CST

Dustin is feeling well, his blood counts still are not recovering as quickly as we would like, he is due for chemo next Monday and I am hoping his counts will be up and ready for round 3. We will have counts drawn again on Friday praying these GCSF injections kick in and raise his ANC. Dustin is going on 3 weeks with no ability to fight infection and we have been very blessed that he has not ran a fever (knocking on wood). A fever would require him to be admitted in to the hospital for IV antibiotics (and we all know how bad Dustins dis-likes being inpatient). With the Graces of God and the Power of Prayer we continue to take one day at a time until we beat this monster.

Dustin was enlisted into the National Guard last Wednesday November 1, 2006 for 20 years. Dustin told me "Mom I have been waiting my whole life to be a soldier, now if they would just give me a gun...this is the happiest day of my life!!!" I have made it very clear to Mr. Dustin that he would not be getting a gun, but maybe when he retires at age 28 maybe he could get one then. Dustin has been training really hard (almost non-stop)on his new XBOX 360 with his Call Of Duty 2 game, I have to admit he is pretty good at it.

Please keep Dustin in your Prayers.

Friday, October 27, 2006 8:00 PM CDT

Dustin has completed round 2 of his new combo, his blood counts are hit hard and I hope the cancer has been hit just as hard. I spoke with Dr Modak last Wed., he is awaiting a summary and Dustins last scan results from Dr Alvarado. Dustin is feeling good, eating and drinking good, and he has lots of energy I take these as real good signs. It is sure good to see him get back to the Dustin we all know. Dustin will have blood counts on Monday and most likely he will need red blood and platelets so this will be a long day at the hospital.

Please keep Dustin in your Prayers.

Monday, October 23, 2006 9:44 PM CDT

Dustin started round 2 of high dose Carboplatin And Etopiside (VP-16). His counts have still not recovered but Dr Alvarado thinks that is because of the heavy disease burden in his bone marrow. His red count was 9.1 his platelets were 14 (he will need a platelet transfusion soon) his white count went up to .66 not where we would like it to be but it did go up so that is the right direction. I expect Dustin will be nutrapenic (no ability to fight infection) a little longer this time, we will pray for no fevers or complications and try to keep Dustin as isolated as possible so he will not have a hospital stay (Dustin really dislikes having to stay at the hospital). Dustin is currently feeling good and full of energy, this I am sooooooo grateful for.

Dr Modaks assistant (at Memorial Sloan Kettering Cancer Center) called back today and told me Dr Modak would call me tomorrow evening, they were still working on a plan for Dustin. So we are very eager to hear back from them.

Please keep Dustin in your prayers that this new Chemo Combo will play a part in getting Dustin back into remission.

Wednesday, October 18, 2006 2:27 PM CDT

Chemo did not start today, Dustins ANC has taken a dive, he is now at .44 down from 1.15 last Wed. So the plan is to try again Monday, so he gets the rest of this week off which makes him Very Happy. His platelets were low at 23 up from last week, below 10 (he had to have a platelet transfusion last Thurs.) and his red count had dropped from 10 last Wed to 9.4 today. Dustin seems to be feeling well with no pain. His bone marrow was 50nvolved last month so heavy disease load and tired bone marrow is probably the reason his counts haven't recovered yet. I am hoping and praying his little stem cells will pick up the production by Monday and he will be able to start chemo before his pain comes back.

Please keep Dustin in your much needed Prayers.

Tuesday, October 17, 2006 2:03 PM CDT

Dustin is doing well, he is scheduled to start chemo tomorrow, Praying his blood work is good enough to start. He has had a few pains in his leg but not enough for his pain medicine. I am diligently working to get another round of 3F8's in Dustin, I truly believe they helped clear his bone marrow last time. Today the Drs at Sloan are discussing Dustin, so I am awaiting a call from them today or tomorrow.

Dustin had his Make A Wish trip last Saturday, he had a blast. His limo picked us up and drove us to the Snellville Wal-Mart where Dustin already had a list of what he wanted. The 1st thing on his list was an X-Box 360, then a flat panel 32" TV to hang on the wall of his room, and of course he picked 2 games "Call of Duty" and "Dynasty Warriors". Wal-Mart had a line of people waiting for Dustin when he pulled up in his limo, he even helped them start their day with th Wal-Mart cheer. Dustin was a little overwhelmed from all of the attention but he had an awesome time. The Wal-Mart folks were great they were with us helping every second and made Dustins Wish extra special.

Dustin will be made an Honorary National Guard on November 1st @ 1800 hours (6pm) he will be in a real uniform that they had made for him. SGM Weeks has so many wonderful things set up for my little soldier.

Please keep Dustin in your Prayers for good counts tomorrow.

Tuesday, October 10, 2006 6:57 PM CDT

Dustin is doing well, he is still pain FREE!!! He had counts done yesterday and did not have to have a transfusion yet his platelets were 16 (they will not transfuse unless they are under 10) his red count was 10 and no white count (no ability to fight infection). His next count will be tomorrow and they are certain he will need platelets, the next cycle of chemo should start October 20th provided his counts have recovered.

Dustin has had a lot going on these last few days, as I had posted before he has been granted a wish by the Make A Wish Foundation, his 1st wish was to have his bedroom done military his Uncle Andy, Aunt Michelle, Uncle Ronald, and Aunt Linda wanted to do his room for him so he could make another wish. Well everyone that knows Dustin also knows he has no problem coming up with things that he wants, so he has wished for an XBOX 360 and a large TV he can hang on his bedroom wall like a picture, so he has decided on a shopping spree. His wish is scheduled for this Saturday morning, he is very excited they are going to pick him up in a Limo and take him to the Snellville Wal-mart, out to lunch and then back home.

Also Dustins Aunt Michelle thru her friend has been able to arrange a trip & tour of Ft Benning for Dustin, he is going to be a honorary National Guardsman. We got a phone call yesterday from Sargent Major Weeks going over some of the things they have planned for Dustin he was sooooooo Happy yesterday after talking with Sgt Mjr Weeks he smiled the rest of the night. This trip is to take place in the next couple of weeks and Dustin can't wait. I can not believe all of the things they have planned for him. What BIG hearts our Military has. I should have more details tomorrow after we meet Sgt Mjr Weeks.

A Huge Thank you to everyone for your Prayers.

Please keep Dustin in your Prayers for NO PAIN and continued improvement.

Wednesday, October 4, 2006 8:14 PM CDT

Today Dustin received red blood and platelets (state wide shortage of platelets again) it took 3 1/2 hours to infuse the red blood and we still waited until 6pm for them to find his Much needed platelets after they arrived at the hospital it took a little over 30 mins to infuse. Dustin had a LONG tiring day at the hospital but now he gets 4 days off.

Dustin is still improving a little everyday, we are now hoping he does not spike a fever because if he does he will have a minimum stay inpatient (he absolutely dislikes going inpatient) of 3 days for antibiotics, he has no ability to fight infection until his white cells recover, and hopefully they will by next Wed so we can start another round of chemo. He is finally regaining somewhat of his appetite back, his aunt Michelle and uncle Andy brought him a chicken casserole tonight and he ate more than I have seen him eat in weeks.

Next Dr appt will be Monday for blood counts and a physical so with the power of Prayer and the Graces of God he will continue to improve.

Please keep Dustin in your prayers for continued improvement.

P.S. Any of Dustins class mates that read this his website he wanted me to tell you guys "Hello" and he misses being in class.

Monday, October 2, 2006 5:26 PM CDT

Dustin had his counts taken today, and surprisingly he did not need any blood products yet. His platelets are 28 his red count is 9.1, we are almost sure he will need them on Wed, this is the same day he has his 1st dose of radiation. Dustin has improved again!!!!! He is up walking with a much smaller limp, he is still very weak, fatigued, and not eating much. I am hopeful his appetite will return in the next couple of days. We are still taking one day at a time and so far they have been much improved days.

Dustin has been granted a wish from the Make a Wish Foundation, his 1st choice is a new bedroom done military style, he is my little soldier battling this horrible war called cancer. I will update more once I get more details from Make a Wish.

Please keep Dustin in your prayers.

Saturday, September 30, 2006 10:00 AM CDT

Dustin appears to be responding to the chemo, he has had no pain pills since Thurs, but he does still have his fentenyl patch on. He is up and walking around again still with a limp and a little pain, he is getting some of his sense of humor back.

Last night we began having difficulties urinating but after a LONG night of no sleep for Dustin or myself having him drink loads of water and trying to potty every 30 mins I think he is going ok now. I am not sure what is going on with his bladder but he is not having any pain from it.

With this chemo we expect his blood counts to really drop, causing him to have no ability to fight infection, the other chemos he has had since 2003 have not done this, so it will be very important to keep anyone that even thinks they may be sick away.

THANK YOU EVERYONE for your continued Prayers, God is listening.

Please keep Dustin in your Prayers for continued improvements.

Friday, September 29, 2006 4:34 AM CDT

Dustin has had 2 days of high dose chemo (carboplatin, & etoposide) He is still very medicated for pain, however he did walk a couple of times yesterday. The night sweats (a big sign of heavy disease for Dustin) started Tues night, but after his 1st dose of chemo he has not had those again. I am not sure if we have the pain under control that good or if he is having some pain relief from the chemo. He has one more day of the chemo then next week he is scheduled to have his leg & shoulder radiated, we had the simulation done for the radiation last Wed but the Drs chose to wait until next week to actually do the radiation because carboplatin will intensify the effect and the last thing Dustin needs is burns from radiation on top of the horrendous bone pain he is having.
I am trying like a mad woman to get him to eat and drink, the chemo is making him nauseous and he has no appetite. He has not been able to stand up on the scale for them to weigh him but I can tell he has lost some major weight. Needless to say he is VERY angry that he is hurting and can't play with his friends. The pain meds make Dustin VERY irritable, his big brother Bryan is having a hard time understanding why Dustin is being so mean to him. I try to explain that it is the pain and the pain meds. I am able to leave his side to type this only because he is still asleep. So for those who have called I have turned the phones down and will try to return your call the best that I can when he is sleeping but right now he gets really upset when I get on the phone or if he hears the phone ringing.

Please keep Dustin in you Prayers.

Monday, September 25, 2006 8:09 PM CDT

The scans & tests last week were not good, Dustin has shown more progression. He has had pain set in his right leg last week and it has progressivly gotten worse. He is very medicated for pain right now. Today we were told future treatments would be pallative, tomorrow he gets radiation to the right leg to try and get rid of some of the pain, then on Wed we start a round of high dose Carboplatin & VP-16 in desperate hopes it will knock this disease back. Other than other low dose oral chemos, we are pretty much out of treatment options. I am still praying for a Cure. We are just trying to take one day at a time right now.

Please keep Dustin in your prayers he needs them now more than ever.

Sunday, September 17, 2006 8:31 AM CDT

Dustin appears to have pain setting in on his right leg, I have been giving him regular Tylenol for the aches & pains, but last night I had to give him Tylenol with codiene. He woke up this morning with pain again. I am hoping he over did it at a birthday party yesterday, but I am probly trying to explain the obvious away. Anyway he will have scans next week so hopefully Dr Alvarado will have another chemo up his sleeve. We don't have very many options left, they just don't have many options for relapse Neuroblastoma, and it appears the ones they do offer are still in phase 1 (dose escalation). I am still hopeful this treatment is working.

Please keep Dustin in your Prayers.

Thursday, September 14, 2006 7:37 PM CDT

Dustin continues to do well, he had another bladder episode Monday but it did not land him inpatient this time, he was having problems urinating while we were still at Egelston for his weekly visit but did not tell me because he had his mind set on participating in a play at school, he spent most of the time before the play in the bathroom. He emerged long enough to read his 3 lines then left the stage and went straight back to the bathroom. The Dr's are now requiring him to drink at least 12oz of fluids every 3 hours to keep his bladder flushed, since returning to school he has been drinking better that at home, a huge thanks to Mrs Foote she is doing a great job with Dustin. The last 2 days Dustin has been urinating very good. He has a few pains in his right shoulder and right leg and, he has a small lump on his head and as always it scares me to death. It just kills me to know this cancer is still hanging around in his body getting more resistant to chemo.

We have 3 days of scans and bone marrow with other misc tests next week, these will determine if he continues this chemo. Please pray that we have this beast under control.

Please say a special prayer for the Thomas Family http://www.christithomas.blogspot.com/

Saturday, September 9, 2006 8:29 AM CDT

Dustin is doing well, he spent last week inpatient at Egelston. He was not able to urinate which was very brutal, until they were able to cath him in the emergency room to give him some relief, he then was able to go by himself until Wed morning we had the same problem, so he was cathed again. He had a MRI, CT, & eurodynamics ran and all came back normal with no blockages no blood clots and no explanation as to why he was having this problem. After being cathed 4 times on Wed he has been going fine by himself. The Drs theory is he had some sort of blockage that was cleared when he was cathed so many times. He continues to take his chemo everyday like a little champ with not one complaint. His blood counts were OK platelets at 95 red at 10.4 and white 6.7.
Next Dr appointment will be Monday afternoon, scans will be done again the following week I am praying soooooooooo hard this chemo is working. Please keep Dustin in your prayers he really needs them right now.

I will try to keep this sight updated better, I know everyone is eager to know how he is doing and I apologize for the delay in updates

Wednesday, August 30, 2006 7:06 PM CDT

Dustin started his new chemo on Monday, he is doing well. We have not seen any side effects yet. He is still full of energy with a few pains in his shoulder, leg, and head not enough pain for tylenol. I am praying this chemo is going to work and at least stablize the disease until we can come up with another treatment.

Please keep Dustin in your prayers, he really needs them right now.

Thursday, August 10, 2006 7:49 PM CDT

The MIBG scan was not what we wanted to see today, Dustin has progressed significantly he has a very bright light up on his skull, both shoulders, both hips, and both legs. I briefly spoke with Dr Alvarado today the plan is to meet on Monday to see what options we have. I do not have the official results yet, just what I was able to see, we are also waiting for the CT results. You would not believe he is so sick to look at him, he is very active, happy, and feeling good it is so hard to believe he is not responding to this chemo. This is definitely a huge blow to the whole family.

Please pray for guidance for Dr Alvarado to find the right chemo, and that Dustin remains pain free.

Tuesday, August 8, 2006 8:41 PM CDT

A quick update: Dustin is doing well his blood counts were ok on Monday his red was 9.6 (low but ok) platelets were 56 his white count was 7.2 (high but he is taking GCSF injection every night). Dustin was able to attend school yesterday and today he will have to miss the next two days for scans. He is such a big boy he came right home and did his homework with out me having to ask.

Bryan is doing well also he is still having major issues but I think we are moving in the right direction, he is improving. Thank you all for your continued prayers.

I will update again with scan results Thursday night.

Wednesday, August 2, 2006 5:29 PM CDT

Oh my I can't believe it has been soooooo long since I updated, I apologize. We have had a lot going on with Dustin doing chemo and major problems with big brother, and my job, just about every second of the day has been taken. Dustin, "Thank God" seems to be doing very well, he will complete his 3rd round of chemo this Friday, and scans are scheduled for next Wed & Thurs. We are praying really hard this is working. As good as he is feeling it should be working. His counts have been a little slow to recover, but they are recovering.

Dustin had a good time in Florida with his Nana & Grand-dad, his favorite part of the summer is the hot tub at the beach condo.

I will update again soon.

Please keep Dustin in your prayers. Please say a special Prayer for Dustins Big Brother Bryan for a speedy recovery.

Friday, July 14, 2006 4:45 PM CDT

Dustin has completed his 2nd round of chemo, his red count today was 9.9 his platelet were 56, his next counts will be next Wednesday while he is at the beach with his grandparents. So far he is doing well, he has one more round before we scan again so we can see what is going on inside. He has tolerated the Vincristin at its reduced dose with none of the side effects he had before so I suppose it may be why his counts are dropping, I believe it caused a drop when he had it in January he had to have several infusions, but the disease was pretty heavy then to.

Thank you D.D.& Todd for identifying the mystery ball player above he is Ray Gant # 90 he plays on defense for the Georgia Dawgs. Dustins says "Oh Yeah, his name is Ray".

Dustin is feeling good and very active, he is excited about school starting back in two weeks. He said "I'm going to miss Mrs. Parrott being my teacher.......... ,but I can't stay in 1st grade forever" I believe his open house is on the 28th. He can't wait to see all of his friends.

Please keep Dustin in your prayers.

Saturday, July 1, 2006 9:03 AM CDT

Dustin is Home!!!!! He has been at Camp Sunshine for the last week, he had a blast, he got training from the Ga Bulldog football players, the one I have posted above he really liked, he doesn't remember his name but he really liked him he calls him the guy with really big musles. If anyone knows who he is can you let me know? He also received Basket ball training from the Ga Tech Basket ball team. As you can see in the photo album he has colored his hair Iquanna Green, after a week in the pool it is now more bright yellow with a green tint. He had a busy week, when we picked him up from camp everyone was telling us how popular Dustin was this year (I guess so with Green hair).

Dustin will start round 2 of his chemo on Monday, it will run for 2 weeks and the week he is off he will go with his Nana and Grandad to Florida for a week at the beach, he is looking forward to that, and is on a count down for the Pirates of the Caribbean "Dead Mans Chest" it hits the Theaters July 7th. Since Dustin is going to the beach after his 2nd round of chemo his scans have changed til after the 3rd round. So far he has had NO problems with the VINCRISTINE with the reduced dose!!! Dustin is feeling good, We are Praying really hard this chemo works again.

Please keep Dustin in your Prayers.

Tuesday, June 13, 2006 7:15 PM CDT

After viewing the scans with Dr Alvarado, Dustin has a new light up on his skull, and slight progression in his left femur. We have started the Iranotecan, Tomozolimide, and a reduced dose of Vincristine, 2 weeks on and 1 week off. We will do 2 rounds and scan again Praying we have a good response again.

Dustin is feeling good other than a little nausea and fatigue after chemo today. He has wonderful blood counts 133 platelets, and 12.6 red. So we are off to a good start. We are disappointed that the ABT-751 did not work for Dustin, but we are confident that we will find something that will.

Please keep Dustin in your Prayers.

Friday, June 9, 2006 3:16 PM CDT

Dustin has completed a full week of testing, scans and bone marrow aspirations. Dr Alvarado has just called me to let me know Dustins MIBG scan has shown slight progression so we will discontinue the ABT-751 and meet on Monday to discuss other treatments. I was so hoping this would work, Dustin is feeling and looking great it is hard to believe he has progressed. The left femur had a slight light up that was not there on his last scans in April he also has a new spot that is lighting up slightly on his skull, he has never had a light up there before so that is a new spot.
The CT scan was ok, the echo was ok, we do not have the bone marrow or 24 hr urine test yet.

I will update when I know more.

Please pray that Dustin stays pain free until we start a new chemo.

Wednesday, May 24, 2006 8:33 PM CDT

Dustin has started round 2 of ABT-751, we went to Bethesda on Sunday and returned on Tuesday. Dustins Drs were very pleased with the absence of side effects. He is feeling good and has tons of energy. He had blood counts today at Egelston his Red count was a whopping 12.5 (normal 11.5 -15.5) in the normal range!!!! and his Platelets were 120 (normal is 175 -475) the highest since last August when he was in remission (Dustins platelets are always the last to recover even in remission)!!!!!! Blood counts are looking GOOD. Praying this means the chemo is working.

Dustin is all set for a week in Florida with his Grandparents, I believe they are staying at a resort in or very close to Disney. Dustins Nana is a RN so I know he will be in goods hands if he has any problems, but knowing Dustin he will be having too much fun to have any problems, he simply doesn't have time for them he is always busy doing something.

The week he returns he will have scans & bone marrow biopsies, then we go back to Bethesda on June 11th thru th 13th and if his scans are improved we will come home with 4 rounds so we won't have to travel for 3 months.

Well gotta cut it short and try to get a bouncing off the walls Dustin in bed.

Please keep Dustin in your prayers.

Tuesday, May 16, 2006 8:04 PM CDT

Dustin is doing well, he is very active and feeling good. His Physical and blood counts yesterday were good. Dustin is attending school this week and we are off to Bethesda on Sunday for round 2 of ABT-751. We will return on Tuesday and he will be back in school for the last 3 days if all goes as planned. After we complete this round we will scan to see if he is responding.

Dustins Nana & Grandad have planned a trip to Disney World for Dustin the 1st week of Summer break and he is very excited, He has camp Sunshine 2 weeks after that, and in August the NIH has a summer camp in Virginia called Camp Fantastic for a week Dustin is going to be pretty busy boy this summer. We are praying this new chemo is going to work so Dustin can enjoy his summer, after all that he has been thru he certainly deserves it. I look at Dustin and see a miracle everyday.

Please keep Dustin in your Prayers.

Tuesday, May 9, 2006 6:43 PM CDT

We are back, Dustin tolerated the treatment well, he had a drastic drop in his white count after the 1st 2 doses from 1600 to 600. This concerned the Drs they have only had 1 other child out of the hundreds that took ABT do this, luckily the counts started to go back up on their own and we were able to proceed with treatment. Dustin has been feeling GOOD with endless amounts of energy. The Drs are pleased that Dustin was able to tolerate the treatment with minimal side effects. We will return to Bethesda on May 21st to begin his next cycle and before the 3rd round they will scan to see if the new drug is working. He spent most of the week at the hospital giving blood every couple of hours so finally the weekend came and after his blood draw Saturday morning we went to the Smithsonian Air and Space Museum, that is a huge Museum Dustin found it very interesting, they have about a hundred real planes and space crafts inside of the building, this place was so big we didn't see everything we ran out of time, they were closing at 4pm. We will have to go back and finish the tour another day. You need a full day to see each Museum.

Dustin had a wonderful birthday, 1st we went to Game Stop for his present (Video games)then we went to Dave & Busters, then the Childrens Inn at NIH had a spring picnic, then for dinner we went to Benihanas, Dustin really enjoyed the show and Japanese food.

I have posted some new pictures.

Please keep Dustin in your Prayers for continued improvements.

Sunday, May 7, 2006 4:28 PM CDT

HAPPY BIRTHDAY DUSTIN (8 YEARS OLD)AND BRYAN (13 YEARS OLD)!!!!!!!

Sunday, May 7, 2006 4:28 PM CDT

HAPPY BIRTHDAY DUSTIN!!!!!!! 8 YEARS OLD!!!!!!!

Wednesday, May 3, 2006 6:08 PM CDT

Dustin is on day 2 of his treatment, he was the 1st to try ABT-751 in liquid form (he only had to take the 1st dose in liquid form, from here on out he will take the pills), the Drs ask him "how was the taste” Dustin’s response was "IT WAS DISGUSTING!!!!! IT TASTE LIKE PUKE AND BELIEVE ME I KNOW WHAT PUKE TASTE LIKE!!!!" Those Drs laughed so hard they were crying. They were explaining to him that he was a pioneer for the liquid form of his new medicine; he was quick to tell them he would rather be a Pirate.
So far Dustin is doing well and has had no side effects; he has had what seems like gallons of blood drawn. Dustin is just having a blast, he goes from the 2 play rooms at the hospital to the play room at the Children’s Inn, and we have also found a Dave & Busters so if he is NICE to his Drs and Nurses he gets to go and spend $20 after his 4pm blood draw. Hopefully we will get to see some of Washington D.C. sites before we leave.

Well I will try to update again soon since I found a computer, because Dustin is bouncing off the walls to go back to the game room.

Thank you for all of the words of encouragement Dustin read them today.

Please keep Dustin in your Prayers.

Monday, April 24, 2006 7:39 PM CDT

Looks like we will be traveling to Bethesda on Sunday the 30th, we will return on May 9th, Dustins blood counts were really good he had a whopping 70,000 platelets (low but much better) his red count was 12.3 actually in the normal range, his ANC 1.53. Dr Alvarado is confident this would be the best time to try the ABT-751, he had an improvement in his scans and bone marrow (at 30% involved still) not a significant improvement but still an improvement, they have changed the time from three weeks to two weeks since last chemo before you can start the ABT-751 which would put the start day of next Monday. We are Praying Dustin will have a good response. After the 2nd round we will scan and draw bone marrow again before the 3rd round to see what kind of response he is having. This trial (if Dustin is able to tolerate it) will be 7 days on and 2 weeks off, this is an oral chemo so Dustin shouldn't need his dreaded tubie, he will be able to go to school, and enjoy his summer.

We have the long awaited Family Camp coming up this weekend with Camp Sunshine, there is no way Dustin is gonna miss that, so we were able to arrange our flights Sunday afternoon, giving us time to get to the airport after the camp weekend.

Looks like we will be postponing Dustins Birthday Celebration until we get back, since on May 7th he will still be in Bethesda. It is so hard to believe my baby is turning 8 years old, to think he has been in this battle since he was two, what a Warrior he is and everyday with him is a pure Joy. Big brother Bryan will be turning 13 on the same day, my 1st born is going to be a teenager.......
It seems like just yesterday they were babies, where does the time go????

Please keep Dustin in your Prayers.

Saturday, April 22, 2006 8:35 AM CDT

Dustin completed his bone marrow & scans last week like a champ. Friday I spoke with Dr Fox from the NCI and Dr Alvarado, Dr Alvarado said Dustins scans are slightly improved from February and his bone marrow is still 30% involved, of course I was hoping for much improvement and the way Dustin feels I had high hopes. Of course an improvement is better than stable and progression so I am very grateful for what we have achieved. I have an appointment with Dr Alvarado on Monday to go over the results and discuss if we change over to ABT-751. Dr Fox would like Dustin to travel to Bethesda the week after next to start the evaluation of course we have the scans needed already. This is definitely a cross road for us, Dustin will have to be off of his chemo for 3 weeks before starting ABT-751, this past week marked 1 week off 2 more to go, I certainly do not want Dustin to be in any pain, and with the graces of God he won't be. I have been reading up on some of the children taking ABT-751 and it seems like all exept one that I know about are having stomach problems (diarrhea and vomiting) I am hoping this will not be the case for Dustin. He is feeling so good and just enjoying life to the fullest. I will update again after our visit with Dr Alvarado on Monday.

Please keep Dustin in your Prayers, he is certainly in need of all the Prayers he can get.

Wednesday, April 12, 2006 6:18 PM CDT

How time flies when you are having fun and feeling good, sorry it has been a long time since my last update. Dustin is feeling good and has been full of energy. His big brother Bryan went to Florida with his Nana and grand-dad for spring break, he had a blast. Dustin had to stay home and take his chemo, but he stayed up late, spent the night with a friend, and spent some quality time with mom.

Dustin has 2 days left in this round of chemo, his counts were very good on Monday. He is scheduled for bone marrow to be drawn on Tuesday next week, I still do not have the schedule for the scans, I am hoping to have them by Friday. Dustin is feeling soooo good I know the scans must be much better. He weighed in on Monday @ 44lbs only 1 lb until he is back to his original weight. With God as our pilot these next scans should direct us in the right direction. If the scans look good enough to stop chemo for 3 weeks we will attempt the ABT-751 trial again, if the scans are not better we will resume his current chemo again the following Monday.

Dustin is a walking testament to the power of Prayer, thank you all for your continued Prayers for the Cure.

Wednesday, March 29, 2006 8:09 PM CST

Dustin had his counts today, no blood needed again. His red count is 11, platelets are 55, and his white count 12.2. He is scheduled to start chemo again on Monday (what a way to spend Spring Break).

Dustin is feeling great and has gained a couple of more pounds back up to 42lbs still 3 pounds shy of the 45lbs he was before the cancer progressed. Dustin is having a wonderful week off, he has been able to play with his friends at daycare, with what seems to be an endless supply of energy.

Big brother Bryan is off to his Nana & Grand-dads in Florida for Spring Break next week. Dustin is gonna miss him, he doesn't know what to do with himself when Bryan isn't home.

Thank you everyone for your Prayers, Dustin continues to improve and show everyone how powerful Prayer is.

Wednesday, March 22, 2006 6:37 PM CST

A quick update to let everyone know Dustin is doing good, he is almost finished with another round of chemo 2 more days and the tubie is out for a week. He is a little more nauseous this round, but other than that he is feeling good.

Please keep Dustin in your prayers for continued improvement.

Thursday, March 16, 2006 7:55 PM CST

Dustin started his chemo again Monday, thank the good Lord he did not and has not had any more bone pain. He had a little nausea today after chemo, but after a little while it went away and Dustin was back to being Dustin. He will do chemo for the rest of this week and all week next week then he will do 1 more round before we scan again I am praying for better scans, (I know they are going to be better) at that point we may try to do ABT-751 again. It is a scary move because Dustin has to go 3 weeks with no treatment and I know all to well how fast this beast can spread.

When Dustin is out of school for 2 weeks doing his chemo we as so fortunate to have his teacher Mrs. Tracy Parrott comes out twice a week for 1 1/2 hour per night to work with Dustin, and Thanks to her he is making straight A's, reading all of the time and really excelling in all of his subjects. I am so proud of him!!!

Dustin went with Camp Sunshine to the overnight trip at the Chattahoochee Nature Center last Saturday and he had a blast. They went on a nature hike at 9pm then had a camp fire made smores. He got to see some of his new friends he met last year at summer camp. We have family camp coming up next month, this is where we all go to the summer camp grounds for the weekend and they keep you busy from sun up until late night, but we all have a weekend of quality time together and lots of fun.

Please keep Dustin in your Prayers.

Thursday, March 9, 2006 7:02 PM CST

Dustin is doing well, he called from school Tuesday with shoulder pain, which is NOT a good sign he just finished chemo last Friday. We had a clinic visit on Wed. his counts were ok his red count was 10.5 his platelets were 58 and his white count was 12.5. No blood products were needed after this round and we were able to stop the GCSF shots, I'm not sure if that is a good thing or a bad thing with the pain present, he has not had anymore shoulder pains, but still intermittent leg and ankle aches. All of those areas still lit up on his scan so I know cancer is present there, just not as bad as the prior scan in December. He is scheduled to start chemo again on Monday providing his counts are still up and we have no more pains. Oh how I wish I had a magic wand I could wave and make this all go away.
Dustin has attended school almost all week, and has played outside with his friend Kyle a couple of days after school, he finally rode the scooter he got for Christmas for the 1st time today. He is feeling good and has plenty of energy just a few aches every now and then. He lost a lot of muscle in his legs in January when his cancer was progressing, but maybe just maybe some of these aches could be muscles rebuilding.

Next clinic visit will be on Monday hopefully he will have no pains and start chemo once again. Two more rounds until scans.

I will update after his clinic appointment.

Please keep Dustin in your prayers that this chemo keeps working.

Sunday, February 26, 2006 7:31 AM CST

Dustin has completed week one of chemo, one week to go to complete this round. His blood counts on Friday were good platelets holding at 73 red down to 10 white count 2 so he didn't need any blood products this weeks. He has had a good week, feeling really good and full of energy again!!!
2 more rounds after this one and we scan again.
Dustin and Bryan went with their dad to the motor cross last night, Dustin has been waiting on that since January when he had to miss the monster truck show because he was so sick. Not much else is going on, we are just taking day by day at this point Praying really hard that this chemo keeps him improving.
I will update the pictures soon.

Please keep Dustin in your Prayers for the Cure.

Monday, February 20, 2006 6:29 PM CST

Official results are the MIBG scan is better!!!!, both bone marrow biopsies are still positive. We are to continue current chemo for 3 more rounds (without the Vincristine)and scan again, at that point we will decide if we should try to change to ABT-751. His counts were good today his white was 2.5 his red was 12 his platelets up to 77. His chemo started today and will continue for the next 2 weeks then he gets 1 week off. We are pressing on for more improvements, Dustin is feeling very well, he is up and bouncing off the walls, and eating much better.

The picture above is of one of his nurses Ms Heidi A.K.A. "The Kissy Nurse". He had bone marrow drawn on Valentines day last week so while he was out she covered him with kisses.

Please keep Dustin in your prayers.

Thursday, February 16, 2006 7:24 PM CST

All tests are done!! The MIBG scan today looks better!!!! Dustin is still lighting up in his right shoulder, that darn tumor in his left groin area (that we can't see or feel anymore) is still lighting up, his legs and pelvis looked much better but are still lighting up. I have not gotten the official report from Dr Alvarado yet but I would say we have at least some improvements. The ladies in the scan kept the contrast on the computer screen turned down again so it was difficult for me to read but I was able to look when she was checking them. Bone marrow will not be back until next week. Dr Alvarado is stopping the vincristine because of the urinating problem but we should continue with tomozolemide and iranotecan on Monday. I will update again after our appointment on Monday with official results.

Please keep Dustin in your Prayers.

Sunday, February 12, 2006 8:35 AM CST

The CT came back negative (no visible problems) so this means it must be a side effect from the Vincristine. He had to have red blood on Friday but no platelets. His platelet count went up from 33 to 35, his red count went down from 9 to 7.5. This is a turn for Dustin, he used to always have to have platelets and hardly ever needed red blood. After his transfusion his energy level went off of the charts he is back to bouncing off of the walls and being Dustin 100%!!!!!!! He went outside and played with his friend Kyle (the 1st time he has went outside and played in about 2 months)and had him spend the night, they played for hours. They were both up early on Saturday running around with toy guns shooting each other.

Well next week he has scans and bone marrow, poor little guy his week off chemo and he still has to go to the hospital. Monday he is off to school, Tuesday will be most of the day at the hospital he will go under anesthesia again for bone marrow aspirates and biopsies, Wednesday he will go to school for half a day then its to the hospital for his MIBG injection. Thursday he will be scanned. Friday he will be off to school again. Depending on his blood counts he should start chemo the following Monday.

Please keep Dustin in your Prayers.

Thursday, February 9, 2006 6:19 PM CST

Another long day at the hospital, Dustin was put under for his MRI. The scan came back negative with no apparent tumor growth at the bottom of his spine Thank GOD!!!! He will have a CT scan of his pelvis tomorrow and his last dose of chemo for this round. Dr Alvarado said that if the CT scan comes back tomorrow with no visible reason for the problem than it must be the Vincristine. Dustin has had an improvement today in the volume he is discharging which is a good sign, also the pain has subsided.

Dustin will have blood counts tomorrow, I am curious to see if he will need platelets or not they were 33,000 on Monday. They will transfuse him if they drop to 10,000. Last round he only needed red blood and he reproduced his own platelets.

Please keep Dustin in your prayers for continued improvements.

Wednesday, February 8, 2006 7:00 PM CST

Today has been an eventful day, Dustin is having problems urinating. Today he was a little uncomfortable so Dr Alvarado postponed his chemo and sent him for an ultra sound of his bladder looking for an obstruction, none were found thank GOD!!!! They ran his chemo while scheduling an MRI and a Foley catheter. The scheduled the MRI for today at 5:30pm. Dustin finally started urinating around 1:30 so he didn't have to have the Foley catheter. Dr Alvarado gave me a couple of reasons for what may be going on: Vincristine-chemo that can effect the nerves around the bladder. Tumor could be pressing the nerves in the spine that effect the bladder. We are hoping it is from the Vincristine, Dustin is doing so much better I couldn't fathom tumor growth at this time. After the MRI we should have a better idea. The MRI is rather noisey they give the parent a set of ear plugs and the patient gets ear plugs and a headset. So during the scan Dustin gets an overwhelming urge to yell at the machine to "shut up", it was giving him a head ache, the lady running the scan stopped and refused to scan him unless he was under anesthesia I was very disappointed she wouldn't give me a chance to talk to Dustin and see if I could coax him into compliance. Needless to say I was not very happy with her, we went back upstairs and talked with Dr Alvarado the MRI department was booked solid for tomorrow, after he contacted the attending physician in the MRI dept and explained what happened and how important it was for Dustin get this scan they were able to get Dustin scheduled in with anesthesia tomorrow at 11am, after his chemo. He has been to the potty about 5 times since 1:30 so he is no longer uncomfortable.

Dustin is scheduled next Tuesday to have bone marrow and bone biopsies, and his MIBG scan. God willing these scans will be much improved.

I will post again after the scan tomorrow.

Please keep Dustin in your Prayers

Saturday, February 4, 2006 7:16 AM CST

Dustin appears to be doing well, he had 1 of 2 weeks of his chemo last week. His counts are beginning to drop (which is normal with chemo) red count is 10 white count is 3.5 and his platelets are 43, these counts are pretty good considering he has had 3 different chemos. He has 1 dose of Vincristin on Monday and 5 doses of iranotecan left in this round, at that point we should scan to see where we stand. We will see Dr. Alvarado on Monday for a physical before chemo starts.

Dustin is feeling a little tired and weak, and sometimes grumpy, but the big thing is he has no pain. He is getting around very well now, just low energy level (which could be from the chemo). Big Brother Bryan is having a few problems with Dustins demands, he is such a good big brother but sometimes he loses it. Dustin isn't hurting anymore so in Bryans mind he is well and shouldn't be tired, weak or grumpy. I have talks with Bryan and try to explain what is going on with Dustin, we all know this is not the norm for Dustin all of the time, and because of the Cancer and Medicine he has to take, sometimes he just doesn't feel his best, Bryan understands (he doesn't always agree) and tries harder (he really LOVES his baby bro). I have to admit the fussing and fighting does make me breath easier (I remember all to well the quiet between the 2 boys when Dustin was in sooooooooooooo much pain).

We are signed up to go to the Circus with Camp Sunshine next weekend, Dustin & Bryan are really looking forward to that, last year we had awesome seats right at the ring he could see everything.

Thank you ALL for your Prayers and please continue to Pray for Dustin and better scans in the upcoming weeks.

Monday, January 30, 2006 6:41 PM CST

After another long day at the hospital Dustins blood counts were good enough to start chemo today, (white count 5,000 red count 10.7 and platelets were 70,0000). Dustin has gained 2 pounds back, and is getting himself around really good. He is still having some mild pain in his right leg (not bad enough for pain medicine) we are hoping that will go away after this round of chemo. His appetite has increased as well, not yet as good as before but getting there.

Dustin was feeling good enough to make 2 trips to Chuckie Cheese this weekend, It sure wore him out, he fell asleep on the way home. It is feels so good to see him playing and NO pain.

Please keep Dustin in your prayers for continued improvement.

Friday, January 27, 2006 5:36 AM CST

Dustin had his appointment yesterday, he was very grumpy and threw Dr Alvarado and the nurses out of his room, they tried to get blood from his fingers twice but could not, so we put emla cream on his port (emla is a numbing cream) for accessing. The nurse came back to the waiting room about 1 hour later and asked Dustin if he wanted to try his finger again since he was calmer and hates having his port accessed he said yes and they were able to get his blood counts that way. His counts were very good white count was over 7,000 his red count 10.5 and his PLATELETS were 67,000!!! We were sure he was going to need platelets today but his little body is making them like crazy now.... His last platelet transfusion was in Bethesda over 2 weeks ago. Anyway his tumor is no longer visible and you can't feel it either, his blood has recovered so well that they are wanting to start chemo again this Monday, I don't know if they will or not just yet until he has blood counts again on Monday morning.

Dustin is doing so much better, he is still a little weak, but not for long I assure you. I can tell he is ready to be "The Wild Man" again.

Please keep Dustin in your Prayers for continued improvement, Prayer is Powerful, Dustin is a walking Testament to that.

Tuesday, January 24, 2006 8:32 PM CST

Dustin returned to school today!!!! Mrs Parrott said he done very well, we are starting off 1/2 days until he builds up more strength. He is excited about going back tomorrow although today wiped him out, that is as active as he has been in almost a month. Everyday he amazes me.

I will update again after his appointment with Dr Alvarado on Thursday.

Please keep Dustin in your Prayers for continued improvement.

Monday, January 23, 2006 6:48 PM CST

Dustin continues to improve, he is walking around a little bit, but complaining of some leg pain in his right leg. He is eating much better and playing alot of his PSP. I am hoping the leg pain is muscular from not walking for 3 weeks and will go away soon. Dustin is still very weak and gets tired very quickly.

Please keep Dustin in your Prayers for continued improvement.

Friday, January 20, 2006 8:58 PM CST

Dustin is still improving, today he had his chemo and then we went to see a movie "King Kong" he enjoyed it and sat up right very comfortably, then he walked out to the truck and into Wal-Mart for pokemon cards. This is the most he has walked in 3 weeks. We came home and he walked up 2 flights of stairs to come in here with me.

One more dose of iranotecan and he will be finished with his 1st round, and has made miraculous improvements. I know he is VERY HAPPY to get his tubie out tomorrow and have 4 days away from the hospital. We are to return on Thursday for a physical and blood counts.

GO DUSTIN GO!!!!!!!!

Please keep Dustin in your Prayers.

Thursday, January 19, 2006 4:25 PM CST

Another day of chemo, all still seems to be improving, he had a little nausea but hasn't gotten sick again since Tuesday.
I was able to get Dustin to walk out to the truck today, he was a little off balance and shakey but no pain. Dustin has eaten 3 meals today (not as much as he used to but well on his way). He has 2 more doses of iranotecan then he has some time off. I can tell he is ready to get up and move about on his own, laying around now is boring him. He is sitting up by himself a lot more and Dustin and Bryan are fussing again (never thought I would be so happy to hear them fussing)(music to my ears!!!).

I will update progress tomorrow.

Please keep Dustin in your Prayers for continued improvements.

Wednesday, January 18, 2006 7:02 PM CST

We spent most of today at the hospital, Dustin had his chemo and a red blood transfusion and it seems to have given him a little boost, his color looks really good, he has eaten very well today with no sickness, he is sitting in an upright position fully alert and playing his PSP. The next task at hand is getting him up walking around, his little legs are so skinny in just 2 weeks he has lost most of the strength in his legs. I have no doubt this will be a small task for Dustin after the Giant Mountain he just climbed.

I would like to thank everyone for your continued Prayers, it looks like they are well on their way to being answered.

I will post his progress again tomorrow.

Go Dustin Go!!!!!!!

Tuesday, January 17, 2006 3:40 PM CST

Dustin had blood counts and a physical exam today, clearly there has been a response to the chemos. He is now able to sit in an upright position for about 30 mins at a time, moves his legs and body with out severe pain "just sore now he says", still walking to the pottie with little or no assistance, he has lost 5 pounds but is starting to get somewhat of an appetite back. He had Vincristin and ironotecan today and has had some side effects, nausea and vomiting, his red blood count has dropped to 6.4 and his platelets have dropped to 37,000. He will require a 3 hour red blood transfusion tomorrow after his chemo. Dr. Alvarado has changed the methadone to 1.25 mg every 12 hours instead of 2.5 mg once a day. He is worried that Dustin may have withdrawals so he will step down the dosage until he is off of it. He wanted the clonodine patch to continue until he tells me to take it off. We had some Dustin personality back today at the hospital as he was sure to give all of the nurses a hard time.

Dustin has traveled a hard road the past 2 weeks not a road that anyone should ever have to travel we are so very proud of our brave strong little boy.

Please keep Dustin in your prayers for continued improvements.

Sunday, January 15, 2006 11:09 AM CST

Dustin had dose 5 of chemo in-patient yesterday, we were there most of the day but Dustin was happy to be free when they discharged him. He now has 2 days off until he starts chemo again on Tuesday, after next week he will get 2 weeks off. He is still at 2.5 mg of Methadone once a day and seems to be doing fine with the pain.

There is not much that Dustin will ask for except his treat after treatments. So I try to make sure I take him to get it every time, the highlight of the day is getting that treat. Whatever it takes to get him through this is what I will do.
Last night we ventured out to Wal-Mart for his after chemo treats and we did some grocery shopping, Dustin was exhausted when we returned home. He woke up this morning feeling a little better I think, he said his back feels a little better today. Come on Chemo kick some cancer butt!!!!!!! I am almost positive we are seeing a response from the chemos he is taking.

Please keep Dustin in your Prayers for continued improvement.

Friday, January 13, 2006 6:27 PM CST

Dustin had his 4th dose of chemo today 6 more to go, Either he is having good pain relief from the methadone or he has a decrease in his pain. I can not tell for sure because of the methadone (he sleeps almost all day). Dustin has gone from 2.5 mg of Methadone every 8 hours to 2.5 mg once a day. The Dr tells me the Methadone is accumulative and has built up in his system therefore controlling the pain better. I am sure praying that it is a reduction in cancer cells causing a decrease in pain. Dustin has been such a good boy, he takes his medicine without one complaint he wants to feel better so bad. I am hoping he will be up and about in the next couple of days.
Dustin will have to go in-patient tomorrow for his treatment but should be able to go home afterwards.
We are still trying to get Dustin to eat, he tells me he doesn't know when he is hungry anymore. He does try hard to eat a couple of bites, he almost ate a whole piece of pizza tonight. Baby steps back to being Dustin.

Please keep Dustin in your prayers.

Wednesday, January 11, 2006 8:16 AM CST

Dustins platelets did not hold out, by Monday they had dropped to 14,000 he had to have at least 25,000 in order to receive the ABT-751. So we got up at 2am and caught the earliest flight we could book back to Atlanta on Tuesday.
We arrived back in Atlanta in time for a 9am appointment at Egelston to start plan B (Tomolozide and Iranitecan) Dr Alvarado added Vincristin for day 1 and day 8. Dustin is still in a lot of pain when he moves, as long as he lies still he seems to be comfortable. All day Tuesday was spent at the hospital, Dr. Alvarado wanted to admit Dustin, but Dustin was not having that, he wanted to go home. After long discussions with the Dr he decided what made Dustin happy and comfortable was what we were gonna do. We will return to the hospital everyday for the rest of this week including Saturday and everyday next week for his treatment. Then he will get 2 weeks off before the next round starts. We are praying constantly that this chemo combination will work for Dustin. We are having trouble getting him to eat and drink but we have been somewhat successful, a bite or two here and there is better than none. Needless to say we are exhausted, but we will keep going as long as needed to get Dustin better.

Please keep Dustin in your Prayers.

Saturday, January 7, 2006 7:18 AM CST

Dustins Platelets have dropped to 29,000 he needs 25,000 to start this chemo. We are planing on flying out in the morning to Bethesda. Mara our Social worker was able to get us an Angel flight and the pilot just happens to be a Dr(Surgen). As long as I do not get a call from Egelston today saying something grew in his cultures everything is a go, and not a moment too soon. Dustin has been in horrible pain, but after the pain meds were changed he is coping so much better. He is such a strong boy, if it were me I can not say that I could have endured the pain the way my sweet baby has.
This is a poem another parent with a Neuroblastoma child posted:

DON'T QUIT!
When things go wrong as they sometimes will
When the road you're trudging seems all up hill
When the funds are low and the debts are high
And you want to smile, but you have to sigh
When care is pressing you down a bit
Rest, if you must, but don't you quit.

Life is queer, with its twists and turns
As everyone of us sometimes learns
And many a failure turns about
When he might have won had he stuck it out
Don't give up though the pace seems slow
You may succeed with another blow.

Success is failure turned inside out
The silver tint of the clouds of doubt
And you never can tell how close you are
It may be near when it seems so far
So stick to the fight when you're hardest hit
It's when things seem worst that you must not quit.

We are keeping the Faith and we will not quit, please keep Dustin in your Prayers.

Thursday, January 5, 2006 6:08 PM CST

It looks like we will be traveling to Bethesda Maryland for ABT-751 treatment (it is a National Cancer Institute trial)on Sunday. Today Dustin spiked a 101.3 fever while we were at the hospital, so cultures were drawn and antibiotics were started. If a bacteria grows his trip will have to be postponed til mid week and Dustin will be admitted to the hospital here for more antibiotics. Dr Alvarado changed Dustins pain medicine today from MS Coten to Methadone and started a clonidine patch trying to get his pain under control. Dustin had to have a CT Scan today, it was pretty painful for him Dr Alvarado has not had time to read the scan We will be returning to the hospital tomorrow for more antibiotics and blood count. Dustins Platelets seem to be holding at 33,000 we have to have at least 25,000 to start the trial. We are in the middle of discussions and planning with Dr Fox in Bethesda, I will update as I get further information.

Please keep Dustin in your prayers.

Tuesday, January 3, 2006 6:48 PM CST

Dustin had his MIBG Scan and Bone Marrow last Thursday, his scan was pretty bad, the disease has progressed and both bone marrow biopsies are positive. I have waited to post this news until after his appt with Dr Alvarado today somewhere hoping that I was not seeing what I thought I was seeing. Dr Alvarado confirmed my fears today. We are looking at one of two treatment options to try and get this beast back under control both are oral chemos (the Drs say that taking these chemos orally work better). Both treatments require his platelets to be a certain number. He has another appointment with Dr Alvarado on Thursday and at that point we will try to make the decision as to which treatment to do.

He has started having severe pain in his lower back and is unable to sit up he is very uncomfortable at this point and we have started the heavy pain meds. We are just devastated, but at the same time are very hopeful that one of the other 2 options will work. Dustin really needs your Prayers right now.

Please keep Dustin in your Prayers.

Friday, December 23, 2005 7:07 AM CST

Dustin started having pain again Wednesday night in his right leg, it has now moved to his left leg. He had his clinic appointment yesterday and needed platlets. He is scheduled for MIBG scan next Thursday along with bone marrow asperites. His chemo should start again on 1/3/06, Dr Alvarado may be changing his chemo since the pain has come back too soon, we have been so blessed with the topotican, he has tolerated it very well.

On the bright side Dustin is very excited about Christmas, he is counting down. He can't wait to open presents. Bryan no longer believes in Santa, but helps me keep Dustin believing. They both have the Christmas spirit and want to shop, wrap presents, cook cookies and cakes. They think on Christmas they should be able to eat whatever they want which means just SUGAR...... I have other plans for Christmas dinner for them which includes healthy food (not a popular subject with them).

Please keep Dustin in your prayers.

Saturday, December 17, 2005 8:29 AM CST

A quick update:
Dustin is PAIN FREE as of yesterday!!!!!!!!!!!!!!!!!!!! The pain in his leg is completely gone, he had a little sickness that started on Thursday but that is gone as well and his favorite part is his tubie is out and he can go wild. His next appointment with Dr Alvarado will be next Thursday, at that time I should have his schedule for bone marrow asperates and scans. He will more than likely receive platelets that day as well. Thank you all soooooo much for your Prayers!!!! My baby isn't hurting anymore.

Wednesday, December 14, 2005 6:43 PM CST

Dustin started chemo Monday, and this morning he woke up and told me his leg finally feels a little better. He went all day today with plain Tylenol. Hopefully by the end of the week he will be completely pain free.

Dustins teacher Mrs. Parrott came out today to help Dustin with his school work, she gave him his Language arts & Math benchmark tests, Dustin scored 100 on Math and 90 on his Language arts!!!!!! Yeah Dustin!!!! Mrs Parrott volunteered her time for Dustins Homebound school during the weeks he does his chemo instead of them sending someone Dustin doesn't know. A BIG THANKS goes out to Mrs Parrott I know she works all day and has a family of her own to take care of, and it takes a lot of juggling to be able to do this for Dustin.

Please Keep Dustin in your prayers for more pain improvement.

Saturday, December 10, 2005 10:34 AM CST

Dustin started having leg pain in his right leg above the knee Thursday night, it has gotten worse, this morning he can't walk on it without pain. We started Tylenol 3 last night so he could sleep. During the day we are relying on Tylenol so he won't be sleepy. Even with pain medication if he walks it hurts. He should start his chemo on Monday praying he gets relief quickly. Dustin seems to be in good spirits as long as he doesn't have to walk. He has spent most of his time playing video games. I was worried that he would start having pain since his chemo was delayed. After this round of chemo they will do the bone marrow test so they will have the needed documentation to continue the chemo even if his blood hasn't recovered. He will also have scans run again.

Dustin is a strong boy, we are Praying for relief with his chemo. Please keep Dustin in your Prayers.

I will try to update again Monday after chemo starts.

Monday, December 5, 2005 7:43 PM CST

Well Dustin was unable to start his chemo today, his platlets still have not recovered but they are on there way up, the white & red cells were borderline he should be ready by next week. Dustin of course was thrilled, he gets to go to school this week and no tubie.

We had a wonderful time at the tree festival yesterday, they had some of the most beautiful trees I've ever seen. Dustin stayed on the small roller coaster the whole time, I don't think he even noticed trees were there. Bryan stayed with the model train city almost the entire time. They both enjoyed the trip and did what they enjoyed. Dustin sat back in the limo sipping his soda and watching Christmas cartoons like he rides in a limo everyday. Bryan however really enjoyed the limo ride and checked out the whole car. They had a line of 28 stretch limos escorted by Atlantas finest. You can imagine how long the line was, all of the roads were blocked for us to continue all the way to the congress center.

Dustin continues to be pain free and full of energy, please keep him in your Prayers.

Saturday, December 3, 2005 7:40 AM CST

Dustin has had a good week, he has had a sty in his eye since last Monday, Dr Alvarado put him on some strong antibiotics it appears to be getting better, hopefully it will be gone soon. He will start his chemo on Monday, after this round we should be scheduling his scans and bone marrow.

We have been invited to go to the Ga World Congress Center tomorrow with 24 other families from Egelston to see the Festival of Trees a limo service has donated limos for each family to ride in, Dustin and Bryan are very excited to go. What a perfect day tomorrow will be, Dustin is feeling good and full of energy.

Thank you all for all of the entries on Dustins Guest book, he is reading them all. It is helping his reading skills too. His comment to me was "I don't know why all the Ladies Love me" He is such a little ladies man.

It is amazing how I can be totally devastated and worried about Dustin and he will come running into the room and out of the blue telling me "Mom did you know boys rule and girls drool?" and just laugh and run off without a care in the world. Dustin truly keeps me upbeat he is my best medicine.

I will update his pictures soon. Mom has been a little overwhelmed lately.

Please keep Dustin in your prayers I know God is listening. He is laying the path of treatment for us again to follow. I can feel remission is in Dustins future there is no other option.

I added a new link below called Cure for Neuroblastoma, the author is a very special 19 year old girl who has created this site just because she cares about these kids. It is so refreshing when you see someone so young giving so much of themselves just because they care. She has configured a list of kids with Neuroblastoma, it's a nice site check it out.

Tuesday, November 29, 2005 5:25 PM CST

Sorry it has taken so long to update: Dustin had an appointment last Wednesday for counts, he had to have platelets everything else was ok. I spoke with Dr Alvarado about treatments that were available if the topotecan wasn't working, he has been in contact with Dr Cheung and have come up wit 2 additional chemos to add to the topotecan if needed. He had other e-mails to Dr Cheung that he was awaiting his response. He said he should have the responses by his next appt on Monday.

Bryan and Dustin spent the holiday weekend with their Nana & Grand-daddy, and returned home on Sunday.

Monday Dustin had blood counts and physical, Dr Alvarado thinks the tumor is shrinking!!!! A great sign the chemo is working!!! Dustin will be starting his second round next Monday and after that round Dr Cheung would like to re-evaluate him for preparation for antibody therapy.
Hopefully Dustin will tolerate this next round of chemo and tubie a little better than last.

Please keep Dustin in your prayers

Friday, November 18, 2005 6:39 PM CST

Dustin has completed this round of chemo and the TUBIE is out (not one moment to soon)!!!! He had a little sickness this time but it did not hold Dustin back. We have still had some bone pain but it has decreased, so I see that as good the Topotecan must be working.
Our next appointment will be on Wednesday November 23rd, I know that Dr Alvarado has been in contact with Dr. Cheung in New York. I am confident those two great minds will come up with an effective treatment for Dustin. So hopefully I will be able to talk to Dr Alvarado about some more options on Wednesday. The topotecan has held Dustins disease at bay, but after 22 rounds it did not kill it. We have to come up with another option for Dustin before his cancer becomes resistant to topotecan.

Dustin is reading his guest book himself, and really enjoys your messages, he loves to read and getting better at it everyday.

I will update his pictures soon.

Thank you all so much for your continued prayers.

Monday, November 14, 2005 7:17 PM CST

Dustin started chemo today after he had his CT scan, I do not have the results for the CT yet. Every thing went smoothly with chemo, no sickness so far. I don't want to speak too soon.
Dustin seems to be feeling well and is in good spirits, the worst part of the day was getting the tubie (chemo line) he has to keep it for 5 days & it is very uncomfortable for him, it limits his movements so he has to be calm (no bouncing off the walls)for 5 days (that is torture for Dustin who is always wide open).

Thank you all for you kind words, Dustin is a strong boy and we know that he is going to beat this beast.

Please continue to pray for Dustin, and his little body to respond to this chemo once again.

Thursday, November 10, 2005 5:55 PM CST

Dustin has relapsed, we are to start chemo on Monday. His scan we ran today was MIBG which is specific to Neuroblastoma, it lit up everywhere that Dustin has complained with pain and then some. He has a knot that has come up in his right groin area that I thought was a swollen gland, it is a tumor. We are completely devastated over this news, Dustin has been doing so well. Please keep him in your prayers that we beat this nasty cancer once again. We are going to try Topitecan again and pray he responds like last time with minimum side effects. I talk to Dustin about it and he doesn't seem to be upset over anything but having to be out of school and having his tubie (chemo line) in for 5 days. He is very upbeat and positive, you can't tell anything is wrong with him from watching him run around playing. Dustin is not in horrible pain because we have caught it pretty early, he has intermittent aches and pains.

Please pray for Dustin.

Tuesday, November 1, 2005 7:09 PM CST

Dustin has been having some bone pain in his right ankle and right shoulder, we had a bone scan ran last week. Yesterday we got the results which are inconclusive at this time. Something is going on in his right ankle. We are now scheduling an MIBG scan that will only light up for Neroblastoma. Dr Alvarado has also suspended his accutane treatment until after the MIBG scan. Please pray this scan doesn't light up.

The scan should take place sometime before next Thursday 11/10, which is his scheduled appointment with Dr Alvarado. I will post again after his scan.

Please keep Dustin in your prayers.

Thursday, October 6, 2005 4:39 PM CDT

Dustin is doing GREAT!!!! He had his last clinic visit on Monday his blood counts are all in the normal range (even the platelets!!!!!). Round 3 of accutane started Monday and continues for 14 days. Next clinic visit will be on Oct 31 (Halloween).

I had a phone conference with his teacher today and Dustin is doing GREAT in school he is reading above the 2nd grade level, and has aced math so far. The only thing Dustin needs to work on is slowing down and writing neater. What a smart boy!!!!!

We had Family Camp weekend at Camp Sunshine last weekend and as usual the boys loved it, they want to do everything and usually do by the end of Saturday. I however am exausted......

Please keep Dustin in your prayer for continued NED.

Monday, August 29, 2005 2:01 PM CDT

No news is good news, Dustin is doing really well. He had his blood counts today and they were all normal except for those stubborn platelets (always the last to recover) they were still good at 130,000 normal is 175,000. I need to check accutane to see if it suppresses the platelets. Dustin has finished his 1st round of accutane the only side effects were DRY lips (they were really really dry) and he would have from 2 to 3 episodes a day where he was very uncooperative and was very irritable other than that he did very well.

Dustin and I went to the All American High school Base- ball Classic in Baltimore, Maryland sponsored by Aflac August 11th thru 14th. Dustin had a blast he met a little boy on the airplane they hit it off and were stuck together like glue the entire trip. He met Cal Ripkin Jr and Dennis Martinez along with the best High School players in the US. We also visited Ft Henry and the Baltimore Aquarium.

Dustin is doing well in school. He comes home and does his homework every evening before he plays. He is a smart boy, he just whips right thru it.

Please keep Dustin in your prayers for continued NED.

Tuesday, August 9, 2005 7:36 PM CDT

We have the best news!!!! We got the official results yesterday from Dustins Bone marrow biopsies, bone scan, and CT scan, all are CLEAR no evidence of dieses anywhere!!!!!!

Dustin has had 21 rounds of high dose chemo (topetican) and one round of 3f8's in 22 months and handled it like a true survivor. For the next six months he will take 6 pills a day for 2 weeks on and 2 weeks off called accutane. Dustin has had this before and tolerated it well, other than making him a little more aggressive and dry skin this should be a walk in the park. The purpose of the accutane is to cause any tumor cells left in his body to mature and die.

Dustin is sooooo happy he doesn’t have to have chemo anymore!!!!! He gets to be a normal kid again. The first thing he asked when Dr Alvarado gave us the wonderful news is “CAN I DO KARATE AND BASEBALL NOW???????!!!!!!”

I will update again soon.

Please keep Dustin in your prayers to continue to be CANCER FREE

Thursday, July 21, 2005 7:43 PM CDT

Dustin had his Blood counts today and they were great all of them!!!!!!!!!!!!!

He was examined by Dr Alvarado also, everything appears very good. Dustin is scheduled to have bone marrow drawn next Tuesday July 26th, scans are in process of being scheduled, and blood was drawn today to send to MSKCC to test for HAMA.

Dustin will begin taking 13-cis retinoid acid (A.k.a. Accutane) after his bone marrow has been drawn. This is the same follow up treatment he had after his 2nd stem cell transplant of his initial protocol. He tolerated this medication very well the 1st time.

School starts next Thursday July 28th and Dustin is very excited to start the 1st grade, his big brother Bryan will be attending another school this year he is starting 6th grade and going to Middle School.

The picture above is from Dustin at camp sunshine with his cabin counselor Chris, I was told today from some of the Nurses that attended camp with the kids that Dustin absolutely had a blast he thoroughly enjoyed his week at camp. After Camp he and Bryan spent 2 weeks in Florida with their grand parents.

I thank God everyday that Dustin is so happy and feeling good!!!!

Monday, June 27, 2005 8:02 PM CDT

Dustins chemo has been stopped!!!!! His scans have been clear since August 2004, he has had 21 rounds of high dose Topitecan and 1 round of 3f8's. I am happy and terrified all at once, hoping and praying that his body has recognized and is now killing the neuroblastoma. For now we are just enjoying life to the fullest and trying not to take anything for granted.

Mr Dustin is having a blast this summer he spent last week at Camp Sunshine now he is in Florida with his Nana for 2 weeks, and when he returns home on July 9th we leave for our family retreat at the Light House Family Retreat in Florida so Dustin and Bryan both will have 4 weeks of fun this summer.

The picture above is real, Dustin wanted his hair colored ORANGE, so I let him do it. I took him to the salon they bleach his color out and put in Crayola Orange. (Matches his clown personality don't you think?) He is loving it!!!!!

I changed the pictures, yes more Orange hair.

Please keep Dustin in your prayers for continued NED (No Evidence of Disease) status.

Friday, June 3, 2005 5:43 PM CDT

Sorry it has taken so long to update, Dustin is doing Great!!!!!!!!!!!, he completed this round of chemo today, his tubie is out and he is ready to go. He has Camp for a whole week coming up in 2 weeks, I am sooooo nervous, of course he can't wait to go (so he can get away from his over protective mother).

Dustin finished school last Friday and was awarded the Almond Joy Award because he is such a Joy to be around. The teachers awarded all of the students in their class with candy names on a certificate and a piece of the candy they were named after, I thought that was soooo cute.

Please keep Dustin in your prayers for continuing NED status.

Dustin says hello to everybody!!!

Saturday, May 14, 2005 6:55 AM CDT

Dustin has had a pretty rough week, he was sent home from school twice, the first time he had a bad cough, the second time he was coughing up blood. His platelets dropped pretty low causing him to have a nose bleed this is what he was coughing up. He went to Egelston for his after chemo platelet transfusion Thursday they couldn't find his platelets in metro Atlanta so we got red blood cells and was sent home with his tubie in, he fell Thursday night and we had to pull the tubie out we haven't had this happen before it was quite scary to me (I hate needles I have a phobia about needles) Dustin thinks I'm a big baby when it comes to needles (That’s OK because I am). Friday he went back to Egelston they had found his platelets and Mr Dustin is back to normal.

The boys had their birthday party last Sunday at no other than Chuck E Cheese they had a good turn out and both had a blast. My baby is now 7 years old!!!! and Bryan turned 12 years old. Boy these guys are making me feel old.

Please keep Dustin in your prayers for continuing NED.

Friday, April 29, 2005 4:58 PM CDT

WE HAVE CLEAN SCANS FOR THE THIRD TIME!!!!!!!!! We are still NED (No Evidence of Disease)

Dustins next Dr Appt is Monday, he should start his next round of chemo. I have asked if they will harvest stem cells to have in reserve for Dustin just in case he ever needs them. I will hopefully see Dr Alvarado at his next visit so we can discuss future plans for Dustin.

Dustin is having his 7th Birthday next Saturday. He is getting to be a big sweet boy. I updated his pictures to some we took at Camp Sunshines Spring Family Camp.

Please keep Dustin in your prayers to continue to be NED.

Saturday, April 23, 2005 11:01 AM CDT

Dustin is still HAMA positive we will test again in 3 months, he completed his last round of chemo on the 15th. Scans are scheduled for next Wed. and Thurs. MIBG and CT.
He is feeling fine, very active, and still eating like a horse.

We had family camp weekend with Camp Sunshine last weekend, the boys had a great time, they both caught a fish, and held a real snake with the Snake Master who visited the camp to educate the kids on snakes. The activities kept everyone busy all weekend. Dustin is getting really good at archery he was aiming better than the older kids. He spent a lot of time doing arts and crafts he is very creative.

I will update again after the scans, Please keep Dustin in your prayers.

Saturday, April 23, 2005 11:01 AM CDT

Tuesday, March 22, 2005 5:19 PM CST

Dustin started his chemo this week, he wasn't due for it until next week. Evidently his blood had recovered well enough to go ahead and start early. I am confident his bone marrow is working hard to recover these blood cells.

We overnighted his blood to MSKCC yesterday so hopefully next Wednesday he will still have a positive HAMA.

We Hope everyone has nice Easter!!!!

Please keep Dustin in your prayers for continued remission.

Friday, March 18, 2005 6:25 PM CST

Dustin is doing very well. He has blood counts on Monday, I expect all counts will be good.

He has a very active summer planned this year including Camp Sunshine for a week, a week at the beach with the Light house retreat, then we're not sure where we are going for our family vacation yet, but we are going on one.
Hopefully we will stay on schedule with the chemo with no complications.
His blood work I sent to MSKCC was lost this time so we are sending it again on Monday. I will update when we get the HAMA results. Dustins chemo is scheduled for the week of 3/28/05.

I added the Spring Fling Pictures from Camp Sunshine.

Please keep Dustin in your prayers for continued remission.

Friday, March 4, 2005 6:51 PM CST

Today Dustin completed this round of chemo event free, no sickness, he is very active, and still eating like a horse. He told me pretty soon I would be able to call him little daddy fat belly. He comes up with the darndest things, never a dull moment around Mr Dustin.

His check up last Monday was fine, his blood counts were close to normal. His next appointment will be next Thursday for blood counts and he will probably need platelets.

His hair has stopped falling out completely it just thins out a little but still leaves him with a head full, so much we had to have it cut last week. He still has the knot on his head it hasn't changed since the scans.

We sent blood to MSKCC in New York this week to check again for HAMA, we will get the results next Wednesday.

Please keep Dustin in your prayers for continued remission.

Tuesday, February 15, 2005 6:58 PM CST

Dustin had his blood counts today, he had platelets last Thursday so nothing was needed today. Next clinic visit will be next Monday.

We all went to the Big Apple Circus on Sunday with Camp Sunshine, We had the best seats in the tent, front row center seats. Dustin and Bryan had a blast and we could see everything. Dustin said his favorite part was the dog, cat, horse, and bird tricks. I should have known, as much as he adores animals. Big brother Bryan liked the clowns the best, they both sat and watched the whole show laughing just about the whole time.

Dustin is doing great and feeling great, please keep him in your prayers for continued remission.

Friday, February 4, 2005 4:58 PM CST

Today Dustin finished his last dose of chemo for this round. So far so good, no problems, only he is bouncing off of the walls. He will have blood counts drawn next Thursday. His bone marrow is working hard, Monday he was almost in the normal range for his red count and white count, his platelets were even higher they are always the last to recover.

I will update the pictures soon.

Please keep Dustin in your prayers for continued improvement.

Thursday, January 27, 2005 5:40 PM CST

Dustin is doing very well and enjoying his 4 day school week. He and Bryan are still trying to play with all of the Christmas toys, so this is keeping them both quite busy.
This is the 3rd week off of chemo, which means he starts his next round on Monday. He still has the knot on his head, maybe it is his brain getting bigger, he tells me quite often that he is a genius.
Dustin tested positive once again for HAMA, I have been trying to talk to the Drs at Sloan about a vaccine trial that was suppose to come out this winter, but Dr Modaks assistant Derrick tells me it will probably be this Summer. I still do not have the information I have been looking for on this trial, I guess it will not become available until the trial opens. In the mean time I am happy with clean scans and bone marrow!!!!!!!!!!!!

I have been extremely laxed about updating his site lately, I will try to update more often, maybe even weekly.

Please keep Dustin in your prayers for continued improvements.

Thursday, January 6, 2005 5:16 PM CST

We hope everyone had a Very Merry Christmas and Wish you Happy New Year!!!!!

Dustin is doing great! He completed his MIBG and CT scan last Thursday the results are clean!!!!! No light ups anywhere, the knot on his head is still there, the CT or the MIBG scan showed nothing in that area. The plan is to continue chemo until about May 2005, he started chemo this past Monday had a little nausea on Tuesday but has been fine since.

Dustin and Bryan had a wonderful Christmas, Dustin got his very own computer with DSL, he is trying to learn how to use his e-mail when he is not playing cartoon network. It took 6 weeks to shop for everything and wrap it, but it only took them about 15 minutes to open it all. What a fun Christmas!!

Well I gotta go it's time to feed Mr Dustin, he has a very good appetite and eats all the time.

Wednesday, December 1, 2004 6:39 PM CST

It has been awhile since I have updated, Dustin is doing fine, we finally got his HAMA results and he is still positive. He has developed a small knot at his left temple, we had a bone scan yesterday it came back clear, no unusual bone activity going on anywhere (the last bone scan was done in August and he still had a slight light up in his left femur (the same leg we hit with radiation in July)(could have been the lesions healing), he also had a skull x-ray which showed nothing as well, so both tests we had done came back fine, but we still have a knot that has been there for about a month and we don't know what it is. Dustin is due to begin chemo next Monday so MIBG scan and Bone Marrow aspirations will have to wait until after his treatment. I will see Dr Alvarado on Monday and I will request a CT scan of his head as well, if it does nothing more but ease my very worried mind, I can't rest until I make sure it's nothing. Other than this knot Dustin is feeling great, everyday he tells me one more present he wants for Christmas, he is anxiously awaiting Santa.

Please keep Dustin in your prayers for continued good health.

Tuesday, November 16, 2004 6:39 PM CST

Dustin completed this round of chemo last Friday, he did very well with no sickness. Monday he returned to school, he was a little drained of energy but went to school anyway. Today he felt much better, more energy, but not quite bouncing off the walls yet, maybe tomorrow. His next Drs visit will be Thursday for blood counts. I will call for his HAMA results in New York tomorrow. I will post the results as soon as I get them.

Please keep Dustin in your prayers for CLEAN upcoming scans.

Saturday, November 6, 2004 7:25 AM CST

Dustin is doing great!!!!! He got to be a normal kid this week for 6 days, he should be ready to start chemo Monday. Dr Alvarado said Dustin could have 18 rounds of Topitecan(chemo) which will leave him with another year of treatment. He will schedule scans after this round of chemo, I found this little poem about the scans, it really hits home for everytime we do scans you can't help but to worry:

THE SCAN

A Sleepless Night

Tomorrow our lives could change again
forever...forever...
Will the scan be clear, will the tumor return,
now...or never?...
We try to smooth the ups, the downs.
It's been nice breathing calmly, nice not to frown,
But tomorrow our lives could change again,
forever...forever...

Tomorrow we'll sit while the bangs and clicks
surround us...engulf us....
staring down the tunnel, waiting for the films
that free us...or damn us...
The probation could last for another four months,
Or find us retreating behind false fronts
That we take out tomorrow to hide the anguish
around us...within us...

Tomorrow our lives could continue on course
or falter...get altered...
It's amazing to think that one simple test has
such power...such impact...
To the world around us the test dates come
one after another, eventually numb
To the fact that tomorrow could leave us again
bewildered...off kilter...

Tomorrow we hope that the treatments have helped
change things...delay things...
Are there further treatments that we can survive
do we want them?... can we stand them?...
Has the Cancer been killed; does it lie there in wait?
Will it show up tomorrow, or some much later date?
Tomorrow a crossroads, or merely a rest stop
on a journey....to eternity...

Tomorrow our lives could change again
forever...forever....
Tomorrow our world could be turned upside down
tossed asunder...it's no wonder...
That we dwell in the past, trying to recall the way

I will update the pictures again soon.

Please keep Dustin in your prayers for clean scans once again.

Saturday, October 23, 2004 8:42 AM CDT

Thursday Dustin had his blood count, he had to have platelets again, his platelets dropped to 6.5, which is extremely low, with his blood type being A- his platelets again were not available so he had to return on Friday for them, he missed school again Friday and was very upset, he loves Fun Friday at school. He gets so upset with the Drs sometimes, he just doesn't understand the importance of the transfusions. After his transfusion he perked up even more, literally bouncing off of the walls. Sometimes he is sooooooo wild, but happy and feeling good wild. I wish I had just an ounce of his energy, so I can keep up.

Dustin just loves Halloween (the above picture is Dustins 2003 costume), we are going to the camp sunshine fall festival on Sunday, he is so excited he gets to wear his costume twice. He's gonna be a Pirate, I will post pictures Sunday night, I have put past costumes for the last 3 years in his photo album today. Dustin doesn’t have much of a sweet tooth, but his brother Bryan makes up for him, what candy Dustin doesn't eat Bryan is sure to finish up.

Bryan has Dustins cold now, Little Mr. Dustin was by his side all night taking care of him, making sure he had everything he needed to feel better. This was just the sweetest sight. Dustin laying next to Bryan patting his head telling him he hoped he felt better tomorrow. Dustin is such a sweet boy with a heart of solid gold. He unfortunately knows all to well how it feels to be sick.
He has amazing compassion for anyone that feels bad.

Pleas keep Dustin in your prayers as we are getting close to scan time and we are praying for clean scans once again.

Wednesday, October 20, 2004 6:41 PM CDT

All is well with Mr. Dustin, he has a little cold (a piece of cake after his other sicknesses) other than that he is still feeling good and is very active. He has a blood count appointment tomorrow, I am assuming they will be low, Thursday will be only 6 days since his chemo. Next week they should start going up on their own.

I will update after counts tomorrow, please keep Dustin in your prayers for continued improvement.

Wednesday, October 13, 2004 6:32 PM CDT

Dustin is on day 3 of this round of chemo, 2 more to go. He is tolerating it very well, no sickness, very active and still a tremendous appetite. On Monday his platelet count was up to 100,000 (normal is 175,000) his red count was 10.5 this was a normal range and his white count was 3.5 normal range as well, his blood is recovering quite well which is a very good sign of no dieses in his bone marrow. The platelets have always been the last to recover, even when he was undergoing treatment the 1st time.

We went to family camp at Camp Sunshine last weekend, Dustin and Bryan had a blast, Dustin caught his 1st fish, he and Bryan got a lesson in archery, boating, cooking, & arts and crafts all in 1 day. Dustin will be old enough this summer to go to camp by his self for a whole week, he is looking forward to it, not so sure I am. He has become quite independent when mom's not around.

Please keep Dustin in your prayers for continued improvement.

Wednesday, October 6, 2004 6:48 PM CDT

I got Dustins HAMA results from MSKCC today and he is still HAMA positive!!!!!. I copied some info from MSKCC about HAMA I thought it might help you understand what it is:

What is HAMA?

HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from a mouse white blood cell; this means that 3F8 looks different from a human antibody and a human will form antibodies (HAMA) against 3F8. If a patient has HAMA, there is no point in administering 3F8 treatments because the HAMA will block the 3F8 from getting to neuroblastoma cells. However, HAMA can disappear; when that happens, we can resume 3F8 treatments. We check for HAMA by a blood test. Patients with HAMA do not have pain or other side effects of 3F8 treatment, but patients without side effects sometimes do not have HAMA (and can continue to be treated with 3F8).

Is HAMA good or bad?

HAMA might be a sign that a patient is developing an immune response against the neuroblastoma -- and that is a good thing. It is probably best that a patient receive at least four cycles of 3F8 treatments.

Most patients who have received chemotherapy only a short time before 3F8 treatment do not make HAMA because their immune system is too weak. In Memorial Sloan-Kettering's protocols, our aim is to give repeated treatments with 3F8 until HAMA is made. It appears that the best chances for cure exist when multiple cycles of 3F8 treatment are given and the patient begins to form HAMA. We continue to study HAMA to gain a better understanding of its role.

Hope that helps a little with the understanding of what HAMA is, I look at it as a good thing, I know it’s still in his bone marrow fighting. If and when it goes away I will try to get another round in him, the quality of life he has is priceless. I hope and pray everyday we have beat this monster. We will continue with his current treatment of high dose topetican for 5 days on and 2 to 3 weeks off.
Dustin didn't start chemo this week, Dr Alvarado wanted to wait another week since we are NED (No Evidence of Disease)at this time (God it feels good to say that!!!!!). He wants Dustins bone marrow to work by itself with out transfusions. He should be good to go by Monday. His platelets are the hold up, he has to have over 50,000 and he has right at 50,000 so another week he should be good to go.

Tuesday, September 28, 2004 7:39 PM CDT

Dustin is doing excellent. He is very active and feeling very good, he did have platelets last Thursday, blood counts yesterday were good so he should start his next round of chemo next Monday, he isn't happy about missing school for a week. Somehow I have miraculously gotten him to do a little bit of home work (something he would never do before). He is really enjoying school and wants to go everyday (can't say that I blame him, I'd rather go to school than have to take this yucky medicine too).
No scans scheduled yet, I am guessing early November. We drew blood to send to New York last week to test for HAMA. I will post again when I have those results.

The picture above is Dustin & Bryan swimming like little fish in the pool at the hotel on our vacation.

Sunday, September 19, 2004 8:22 AM CDT

Dustin finished his chemo on Friday, we had a some nausea and vomiting during this round. This was a long week, my father passed away Monday night, so we had chemo and a 3 ½ hour drive everyday to Summerville, Ga. for the wake. The funeral was on Friday. Dustin and Bryan all dressed up in their black suites they were so handsome both were on their best behavior, I am so very proud of them both. I think maybe the car ride was what was making Mr Dustin sick this time. So we do blood counts for the next 3 weeks until the next round, Dustin has no active dieses in his marrow so we wait until his counts recover on their own (no transfusions!!!!!!)
Dustin gets a treat after his Dr visits and we have missed 3 this week because of the circumstances and he didn't even fuss, he kept telling me I hope you feel better tomorrow, not even worried about himself feeling bad. My baby is such an adult, sometimes he seems so wise.

Sunday, September 12, 2004 11:05 AM CDT

Dustin is doing GREAT!!! We start our next round of chemo tomorrow, it will continue all week then he gets 3 weeks off or until his blood recovers. Dustin still has his HAMA but we will send blood off to MSKCC again next week to check for HAMA. If he loses the HAMA he will then be eligible for another round of 3f8s with Beta Glucan, GCMFS injections, and accutane. Dr Modak told me they have a vaccine trial coming up in the winter that Dustin would be eligible for. I don't have much info on this new trial yet so until I know what the benefits are for Dustin I will update the info as I get it. I am just sooooooooooooooooooooo Happy right now Dustin is disease free!!!!!!!!!!!!!!!!!!

Please keep Dustin in your prayers for continuing NED status.

I changed his photos, some more pictures of vacation.

Saturday, August 21, 2004 8:30 AM CDT

Dustin finished his last dose of chemo for this round yesterday, with no sickness. Dr Alvarado is very hesitant to stop treatment just yet on Dustin, as we all know how sneaky and aggressive this cancer can be. So for now until an undetermined time he will continue with the chemo, Dr Alvarado is communicating with Dr Modak in New York, I am unsure at this time if Dustin will be eligible for the new trial for 3f8's in New York since he is NED (NO Evidence of Disease). I am sure that after a couple more of rounds of the topetican he will scan and draw bone marrow again to make sure we have this beast under control. For now Dustin looks great and is literally bouncing off of the walls (he has several knots on his head to prove it). Dr Alvarado now believes the 3f8's had a long term effect on Dustin and probably killed resistant cells that the chemo would not have. So when God sent us our angel from New York "Mrs Shirley Cox with the Chemotherapy Foundation" he opened the door for the cure for Dustin. Had it not been for Shirley and her pull at Memorial Sloan Kettering Cancer Center in New York we may not be where we are today (NED Status). We would like to thank every one for the millions of prayers sent on the behalf of Dustin, Home Depot and Air Tran airways for the travel accommodations they so graciously provided for us at a drop of a dime, and thanks to my employer H & E Equipment Services for the TOTAL support in Dustins treatment, and time that was needed off with NO questions asked. I gave them the easy out so many times from January 2001 (time of diagnoses thru his relapse)til now, but they refused to accept it. There are no words to express our gratitude for all of the help given to us. "THANKS TO YOU ALL!!!!!"

Please keep Dustin in your prayers for continued NED Status.

I will continue to update his site with information as we receive it.

Monday, August 16, 2004 4:22 PM CDT

DUSTIN HAS CLEAR BONE MARROW!!!!!!!!!!!!!!!! Both the aspiration and biopsy are NEGATIVE!!!! I will post more later, just wanted let everyone know the great news.

Tuesday, August 10, 2004 5:50 PM CDT

Dustin had his bone marrow drawn this morning and has recovered well from it, I have the best news!!!!!!
This morning I was able to see Dr Alvarado and talk to him for a few minutes, it appears that his nurse practitioner who gave me the scan results had confused the bone scan with the MIBG scan. The MIBG scan was CLEAR!!!!! No uptake anywhere!!!! The MIBG scan is Neuroblastoma specific, so it only lights up for presents of Neuroblastoma cells. The bone scan had up take in the left femur. The bone scan only looks for activity, which generally appears around the joint areas, since the bones grow from the joint area it causes the scan to light up because it is producing activity, healing of lesions caused by cancer causes activity, lasting radiation effects could cause activity. So the uptake being in the bone scan and NOT the MIBG is the best news we could have gotten!!!! Now we wait and pray for clear bone marrow. Either way if the marrow is clear or not we feel it is for the best to continue treatment for awhile since Neuroblastoma will lay dormant and come back stronger than ever, so since we have the upper hand we are gonna continue. So we start our next round of chemo on Monday.
This morning we arrived at the hospital before Dr Alvarado, when he came in Dustin ran up and hugged his neck just out of the blue. Dustin has known Dr Alvarado for 4 years and has barley said 2 words to him, less well hugged his neck. Dr Alvarado always jokes with Dustin and tries to get him to talk, laugh, or smile. He occasionally gives him a smile and giggle.
Dustin is looking and feeling great, eating like a horse and has so much energy. It does our hearts good to see him enjoying life and feeling soooooo good.

Please keep Dustin in your prayers for continued improvement.

Thursday, August 5, 2004 6:48 PM CDT

Dustin finished his scans today, I got the results on the CT scan & MIBG. The CT scan was unchanged (no visible tumors still THANK GOD!!!!!!) The MIBG scan show a slight light up above the LEFT knee (we just did 10 doses of radiation in that area alone in July!!!) The light up was so light I could not see it during the scan, Dr Alvarado couldn't see it either, but the Radiologist did. I was sure hoping they would be clear.
Dustin is so active and feeling sooooo good, it's hard to believe that he is still sick.

Dr Alvarado has decided to draw bone marrow next Tuesday. I have contacted the Drs in New York, I saw on their web site that the "new trial" we were waiting for was finally open. I will contact them again next Thursday to see if they think Dustin would qualify. They want to contact Dr Alvarado tomorrow to get scan results and discuss Dustin in there weekly meeting next Wed.

So until all of the Drs consult, we do not know the next step in Dustins treatment, but should know by next Thursday. In the mean time know Dustin feels like a million bucks and keeping his mommy on her toes.

Monday, August 2, 2004 7:15 PM CDT

We are back from Florida!!! Dustin and Bryan had a blast. On Monday we went to Sea World (Dustins favorite part of the trip)We saw Shamu and fed the Dolphins and Sharks after Dustin fed the dolphins raw fish, he had to wipe that slime off all over his cloths, (he forgot they had a sink to wash your hands in) so needless to say Dustin smelled like fish for the rest of the day. It didn't bother him one bit.(Dustin posed with the turtle for a picture for his web site.)
Tuesday we spent ½ day at Nemours Childrens Clinic for blood counts, the rest of the day the boys swam in the huge pool at the Hotel.

Wednesday we went to Disneys Animal Kingdom, we took the safari and saw rhinos, giraffes, elephants, crocodiles, and gorillas.

Thursday we went back to nemours clinic for blood counts and a platelet transfusion, the boys spent the rest of the day swimming.

Friday we went to Universal Studios and rode just about everything there, we stayed until closing. Dustin and Bryan both loved everything at universal.

We returned home on Saturday went school cloths shopping on Sunday and Dustin and I went to see his new cousin Kaily Sunday night, she was born the Friday before we left. She was 6 lbs 18 inches long, Dustin told me today that he liked the baby but the baby makes him real nervous.

Dustin was to start school today but we had a bone scan scheduled for this morning, a CT scan on Wednesday, and the MIBG scan on Thursday, needless to say Dustin is ready to go back to school tomorrow.

Please keep him in your prayers for CLEAN scans. I should have the results back by Friday.
I will post as soon as I have them.

Check out the new pictures.

Wednesday, July 21, 2004 5:32 PM CDT

Sorry it's been so long since I have updated. Dustin is doing very well, he finished his last dose of this round of chemo on Friday with flying colors, no sickness at all. He has been very active, and still eating very well.

We are planning to go to Orlando next week, for a fun filled week of Sea World, Disneys Animal Kingdom, and Universal Studios. Dustin has been wanting to go on vacation so bad, but his treatments have been on-going. We have a little break next week finally. He will have a platelet transfusion while we are in Florida and hopefully that will be it until we return, we schedule scans when we get back to see where we stand at this point with the cancer.

Dustin is very excited and ready to go back to school. I finally told him a few weeks ago that he would be in kindergarten again, he was upset, but is ok about it now.

Please keep Dustin in your prayers.

Tuesday, July 13, 2004 6:18 PM CDT

Dustin had his last dose of radiation and began his 1st dose of chemo for this round yesterday, so far so good, he hasn't been sick. He has been eating like a horse, (I take him to work with me while he is having treatment) in- between Dustins feedings I might get a little work done (of course I am trying to get him to eat all of the time because of the weight he lost thru the last few rounds of chemo) he looks like he is putting his weight back on and is feeling really good, we are very thankful for that. We will be scheduling scans after this round of chemo, please keep Dustin in your prayers that he is beating this monster.

Dustins big brother Bryan went to the beach with their Nana & Grandad and was gone for 2 weeks, He came back home on Sunday. Dustin sure did miss him!!!! They have been nice to each other for 2 days now!!!!! I will thoroughly enjoy the peace while it lasts.

Dustin spent last weekend swimming with his cousin Jenna, he brought pictures for me to put on his web site.

Friday, July 2, 2004 7:30 PM CDT

Dustin has had 5 of 10 doses of radiation to his left leg, he had to have platelets again today. He will have labs again on Tuesday. Dustin ran a fever last week, and some of this week, blood work came back and he has MONO. I have no idea where he contracted this, but it explains the fevers which really had me scared. An unexplained fever is not a good thing. He broke his fever on Wed. and has been eating like a horse and feeling good again finally. We plan on making a trip to the state line and getting fireworks for the 4th. We have done this the last 3 years and it sure beats sitting in the Atlanta traffic after a 15 min show.

Monday, June 21, 2004 6:01 PM CDT

Dustin finished his chemo on Friday, He didn't feel very well on Saturday but he went to his cousin Misty's Baby shower anyway. Sunday he laid around the house all day recovering from a loooooong week. He is finally back to his old self today, and boy is he hungry. He once again didn't want the insuflon put in his arm for his after chemo injections of GCSF (stimulates his stem cells to produce white blood cells) so he has had his shots all weekend. The first one I gave him hurt a little, but the 2nd one he said didn't hurt at all. I never thought I could give him those injections, but I guess I am always able to do what I have to do to make sure Dustin has what he needs. "I know that God will never give me more than I can handle, I just wish he didn't trust me so much sometimes."

Dustin has an appointment for labs on Tuesday, and starts radiation on his left leg this Wednesday for 2 weeks as soon as the radiation is done it'll be time for chemo again. Poor baby, no break this month. At least he is recovering much better from the chemo this time.

I updated the pictures with Party animal Dustin at the Baby Shower.

Please keep Dustin in your prayers.

Wednesday, June 16, 2004 8:42 PM CDT

Dustin started his chemo as planned on Monday, Tuesday he was sick all day, thank God he did much better today and was feeling really good tonight. Hopefully he will continue to feel good. He will finish this round of chemo on Friday.
I took Dustin today to get his head shaved, his hair was really falling out and what didn't fall out was sticking straight up, poor baby looked like he had bed-head all day. We have our tattoos ready for when the rest of his hair falls out. He said he doesn't like to not have hair but the tattoos are really fun.
These last 2 rounds of chemo have been quite difficult for Dustin, but he never feels too bad to fuss and fight with his big brother Bryan. Bryan is the very best big brother, he always watches out for his little brother, even when he doesn't have to. Bryan finished 4th grade with solid "B's"!!!! For those of you who know Bryan, you know how hard he worked for that. I am very proud of him so is Dustin. Unfortunately Dustin will be retained in kindergarten, he missed too much school due to his treatment. I would hate for him to be so behind starting 1st grade. He will just be ahead in his class next year. I haven't told him yet I thought he wouldn't notice, I was wrong. He talks about going to the 1st grade, I will have to tell him soon.

Please keep Dustin in your prayers.

Tuesday, June 8, 2004 6:17 PM CDT

Dustin had an appointment with the radiation dept at Emory today, while we were there Dustin went to the potty and had a lot of blood in his stool, so I called Egelston while we were waiting for the radiologist Nurse Tammy said to bring him over when we were finished with the radiologist. Dustins platelets were 21 yesterday today they were 18 so he received some platelets, his red blood dropped from 8.2 to 7.3 so he will probably get red blood Thursday. Dr Alvarado was out so Dustin saw Dr Laury, he checked Dustin out and drew blood for some tests. He couldn't see any visible problems. I asked why was he having blood in his stool he said it is probably from low platelets and a irritated GI track (since Dustin had been sick for 2 weeks). Other than his counts being low, Dustin is back to his old self, feeling good and running around like a mad man.
We went to a Braves game Sunday with the starlight foundation. We had nice and shady seats Dustin and Bryan went down to the field after the game and ran the bases. Dustin didn't understand why the game was so long, his games never lasted that long (t-ball has 4 innings) Bryan wouldn't leave his seat to do anything, for the fear of a ball might come his way and he would miss it. We all had a great time.
Dustin is so excited about going to the day care tomorrow, he wants to play with other kids, my work is tooooo boring. He still hasn't gone swimming yet, but with a little luck and sunshine he will get to go tomorrow.

Dustin says "Hello" to everybody.

Saturday, June 5, 2004 8:48 AM CDT

Dustin went to the Dr on Thursday for labs, he needed a platelet transfusion, his platelets dropped from 25 (normal is 175) on Tuesday to 15 on Thursday. We were sent home on Thursday, they didn't have Dustins blood type of platelets. On Friday Nurse Tammy called and said they located the platelets for Dustin. Dustins platelets had dropped below 10 by Friday. Several other kids were at the clinic Friday hoping to get blood transfusions, blood supply in Atlanta is obviously very low. If you can donate blood please do so, a lot of kids life depend on it.
After Dustins transfusion he seems to be doing better, before the transfusion as soon as we pulled into the parking lot Dustin got sick, as we were leaving he got sick again. After returning to work on Friday Dustin started perking up some, and seems to be returning to his normal happy self.
Dustin still goes to daycare when he can, and loves swimming, unfortunately when he has his port accessed or has his insuflon (an implant so he doesn’t have to be stuck with a needle everyday after the chemo) in his arm he can't go swimming. He really wants to go, it's so heart breaking to tell him he can't, but we have to do what is best for Dustin. The nurses were going to change out his insuflon on Friday, Dustin knew this meant he couldn't go swimming next week at the daycare so he insisted he would rather have the shot everyday than to not be able to swim with the rest of the kids. So Dr Alvarado and the nurses explained to me that with all Dustin has to endure that it is very important to let him make some choices, it gives him a since of control over what he has to do. I took the advise and we are gonna try the shots. He is very adamant about this. I probably stress more about it than he does (I am the biggest chicken when it comes to needles) Dustin doesn't like them but it has become a big part of his life. He is such a big brave boy!!
Dustin will be going to his very 1st Braves game on Sunday with the Starlight foundation, he is very excited. He loved playing T-ball last year, his nickname was rocket-ship. He tried so hard to run fast and he thought he was, but with the past problems with his legs he couldn't run very fast at all, we made him feel like he was running faster than anybody which made him very happy.
Monday we have an MRI of his left leg for the radiologist that will be radiating that leg very soon, we see the radiologist on Tuesday for the consultation and hopefully schedule the day and time for the radiation treatment. That leg was where he 1st presented pain from the cancer upon diagnosis in 2001 and relapse in 2003, so myself and Dr Chueg in New York feel very strongly that this is a problem area with Gods help this will clear that leg it was the only place that lit up on the MIBG scan (MIBG very specific for Neuroblastoma only)
The 2 chemo treatments received has been very hard on Dustin, I am praying it is even harder on this stubborn cancer. It has to be doing something for Dustin has had no more pain THANK GOD!!!!! This is very hard for me to deal with, but when Dustin is in pain it is unbearable. The pain is really really bad and unbearable for Dustin even with the most potent pain medicine. I have never in my life seen so much pain in anyone. Please keep Dustin in your prayers for continued improvement.

Tuesday, June 1, 2004 7:05 PM CDT

We spent the day today at Egelston, Dustin is still vomiting with diarrhea so he was a bit dehydrated today. He had a bag of fluids and then a 2nd bag of fluids with potassium. Dustin has lost a couple of pounds since last week and not because he wasn't trying. He still has a very large appetite so he eats and drinks, we just can't get it to stay down.
We promised to take Bryan (big brother) to Dave & Busters this past weekend for bringing all of his grades back up to a "B". We tried to go on Saturday but on our way little Dustin got sick in the car, so I told them we would go on Sunday. Dustin still wanted to go on Saturday saying "I only throw up once a day and I can carry my bucket in case I get sick again". What a trooper, I know if I had been as sick as him I wouldn't be able to do the things he still insists on doing. On Sunday just before we were walking out the door little Dustin gets sick again, this time I cleaned him up gave him some medicine grabbed an extra set of cloths and off we went to Dave & Busters, bucket and all. He didn't get sick until we got home. He and Bryan played and won about 2700 ticket between them. The prizes there cost A LOT of tickets. They had fun winning the tickets and I enjoyed watching them.
This morning I had a feeling when I called the Dr they would want to see him so I tried to get him to go to work with me (closer to the hospital than the daycare) but Dustin insisted on staying at the daycare he said we made him very bored at my work (to think he used to love coming to work with me).
Dr Alvarado has decided to radiate the Left leg where he had uptake on the MIBG scan, this will be done next Tuesday, we will have an MRI on that leg sometime before then. Dustin has a Clinic appointment again on Thursday his PLATELETS have dropped to 25 as of today, so they already know he will probably need a transfusion on Thursday.

Please keep Dustin in your prayers for improvement.

Friday, May 28, 2004 5:17 PM CDT

Today is day 5 and the end of this round of chemo. Dustin has had a pretty rough week. He can hardly keep anything down. He has had IV fluids everyday this week to keep him from dehydrating. He is looking forward to a long weekend to relax and recover.

He will return to the clinic on Thursday for blood counts, hopefully he will be back to normal long before then.

Tuesday, May 25, 2004 5:51 PM CDT

Today is day 2 of 5 of chemo for Dustin, He began feeling nauseous yesterday after the first round, and full blown sick by this morning. They gave him fluids and a different kind of nausea medicine which seemed to perk him right up, except he is slightly drunk and can't walk a straight line, and rambling crazy talk.

His platelets were up to 62 yesterday they were 55 last Thursday so we know they are building. We are really gonna have to watch his platelets. They dropped very fast after the last round of chemo from 185 to 13. The Drs feel like that is why his eyes were bleeding and he had blood in his stool. This is definitely a lot harder on him this time. We will schedule scans after this round We are Praying for improvement.

Please keep Dustin in your prayers.

Sunday, May 16, 2004 8:44 PM CDT

Dustin loved all of the messages he got!!! I have read them to him about 4 times now, he gets the biggest kick out of it, he says "all of those people read my web page?" and just giggles.

He had a wonderful birthday party! Dustin just Loves Chuck E Cheese. He says he favorite part is the having everybody there with him to play the "GAMES" and of course the presents. He got a Spider man bathing suit and towel and walkie talkies, Yu gi oh stuff, and money. Macey and Cameron from his class came, his cousins Savannah, Shannon, Amber, Farrell and Misty, His aunt Margaret, and Linda. He talks about Macey all of the time, I was glad to finally meet her.

We came home and I filled & tied water balloons until I had a blister on my finger (150 balloons). Dustin, Bryan and the little girls next door had a water balloon fight. Of course Mr Dustin had to wear his new Spider man bathing suit and towel. They had a blast. Watching them have soooooo much fun was defiantly worth the blister.

On his trip to wal-mart on his birthday, he picked out a new "racing" bike and 4 game boy games. We came home and he had a package at the door, his dear dear friends Shirley and Thelma sent him a box full of his favorite "BROWNIES" well needless to say he wasted no time clearing that box out. It took until Sat for him to ride his bike a little, buy Sunday he was riding easily pain free!!! His Nana and Grandad sent him a new green scooter, he scares me to death on it, he thinks it's funny and tries to scare me more..... He rides both scooter and bike all day long thank god with out pain.

On Thursday I called the Aflac Clinic for Dr Alvarado about Dustins Eyes. His Nurse Tammy called me back and said she thought it was pink eye, I have seen pink eye before and this did not look like pink eye. Tammy said the Nurse Practitioner told her to send us to our regular Pediatrician, We took him to the ped. and he said it didn't look like pink eye to him either, and if it was, it was the worse case he had ever seen. He gave us some drops just in case it was. I was looking thru some Neuroblastoma web sites and look up common eye problems, and it linked me to EyeMDLink.com to Conjunctival Hemorrhage (a broken or ruptured vessel, which bleeds underneath the conjunctiva (the white of the eye).The pictures look exactly like his eye's!!!! It doesn't seem to be a real threat unless it continues to happen. I have printed this to take with us to his Drs appt tomorrow.

Please keep Dustin in your prayers.

I updated his pictures, as you can see he wanted his bike on the 1st page. I will change the pictures again soon we have a bunch from his party.

Wednesday, May 12, 2004 8:07 PM CDT

It has been awhile since I have updated and for that I apologize, a lot has been going on the last few weeks. Dustins Bone Marrow finally came back as unchanged, this is good the only change was the uptake in his right femur. The bone marrow didn't come early in the week like it was supposed to, it came late in the week so we had to push the chemo back 1 week. Dustin finally started the chemo 5/3/04, everything was going well until Wed. 5/5/04 Dustin woke up on Wed with a lot of pain in his right leg, the pain got sooooooooooooo bad Dr Alvarado put him on morphine and fentinyl patches. Dustin then had an allergic reaction to the fentinyl patch and broke out all over (I thought he caught chicken pox) The Dr took him off of the patch and gave him visteril and all was well again. After Dustin had his last dose chemo on Friday he got up and limped to the elevator (he had not walked since Tues.) by himself. On Saturday he still had a little pain, but by Sunday he gave me the best Mothers day present ever he woke up feeling no pain in his leg!!! He went out and rode his bike and scooter like nothing was ever wrong with him. Dustin is an amazing little guy. As of today we are still pain free. Today his right eye turned really red I thought it might be pink eye but it doesn't look like pink eye so I will be taking him back to the Dr tomorrow to find out what is going on.
Dustins Birthday was on Friday May 7th he turned 6 years old. Considering all he went thru that day he still wanted to go to Wal-mart to pick out his birthday present. I'm telling you this boy is amazing.
I will try to update sooner next time. If you read this please sign his guest book he asks me to read it to him everyday, he loves his messages.
I will also update his pictures this weekend after his belated Birthday party.

Saturday, April 24, 2004 8:33 PM CDT

We have arrived back from New York today. Dustins MIBG scan showed uptake in the left knee. So we are out of the current study of Beta Glucan and 3f8's. He will be starting chemo as soon as possible, Dr Cheung wants his leg radiated as for that is a problem area for Dustin. We have not gotten the bone marrow results yet, but should early next week. In a couple of months MSKCC has a new protocal opening using accutane, Beta Glucan, GMCSF, and 3f8's. Dustin will be a candidate for that trial.
I will update more after I get the bone marrow results.

Please keep Dustin in your prayers.

Friday, April 16, 2004 8:04 PM CDT

Dustins blood work came back once again HAMA positive. I am in process of trying to schedule scans and bone marrow for next week to see if the cancer is still in his bone marrow, if his bone marrow is clear we can wait for the HAMA to drop if not he will be out of the current study and we will have to start chemo immediately. Dr Modak told me that they have a new protocol opening in 2 to 3 months for beta glucan and 3f8's and Dustin would be considered for that study. Dustin can't wait that long without some kind of treatment.
Dustin is still doing very well and I am praying every second of the day that his marrow is clear, but if not we have other options.

Please keep us in your prayers.

Sunday, April 11, 2004 9:52 AM CDT

Dustin & Bryan returned from a week with their grandparents & dad yesterday. They both had a great time, they went to six flags, visited relatives, and lots of other fun stuff. Dustin has been missing his Nana & Grand- daddy. Every time he see someone that resembles his Grand-daddy he always asks when are they coming to see him.

It's been a while since I updated last. Dustins blood work came back on March 31st still HAMA positive, from speaking with Dr Modak earlier in the month I thought this would take him out of the 3F8's program. I called Dr Modak on April 2nd, and they feel like the HAMA is coming down so we sent blood off again on Thursday April 8th, we expect the HAMA to be gone this time if it is, we go back to New York for another round. Dustins blood counts look great on April 8th his white count was in normal range, his red count was in normal range, but the platelets are still below normal his is 131, normal is 175 +. His counts have not looked so good since his relapse in October.

God opened the pathway to get us to MSKCC in New York, he sent us an Angel Mrs Shirley Cox, she is such a positive influence. She has been thru treatment for Breast Cancer so she knows what Dustin is going thru. Shirley will be hitting her 5th anniversary for being cancer free this May or June!!!!!! I have strong faith that we are doing just what God has intended us to do. Maybe his treatment is delayed for a reason, we never expected to get more than 1 round of the antibodies going into this, but hopefully with Gods help we will get more. I truly believe god is leading us down this roller coaster. It is the hardest thing we have ever had to do, but if God brings you to it he will bring you thru it.
Dustin has a very special purpose on this earth.

Dustin is still feeling great and running around like a mad man.

The Easter bunny came last night, and left Dustin & Bryan Basket ball and soccer ball Easter baskets, Dustin got up and found all of the eggs before his brother even woke up. He says the early bunny gets all the eggs. He is soooooo funny!!!.

Please keep Dustin in your prayers for continued improvement.

Saturday, March 27, 2004 8:06 AM CST

Dustin is still feeling and looking great, we had a Drs appt with Dr Alvarado on Thursday, he examined Dustin, ran blood counts, and was amazed at how good Dustin is doing. His white blood cells and platelets dropped a little, his red count has been 10.8 for some time now. We sent blood to New York to test for HAMA (human antibodies vs. mouse antibodies) on Tuesday. We are holding our breath til Wed. the 31st when we get the results from Dr Modak. If the results are negative we will return to MSKCC for another round of 3f8's if his blood is still positive we will have to move on to a different treatment.

Dustin is such a special boy, I can be worried to death about him and what we should do next, when he comes barreling in the room shouting "you want a piece of me punk?" he just makes you laugh. He has a special ability to cheer you up no matter what.

Dustin says to say HEY to everyone!!!!

Please keep Dustin in your prayers.

Thursday, March 18, 2004 7:50 PM CST

We are home, Dustin is doing great! We got results from some of the tests: MIBG scan shows no change(this is good, Dustin hasn't had any chemo in about 6 weeks), Bone marrow aspirations (he had 4), 2 front right & left aspirations are negative and the 2 back right and front aspirations are still positive. Before the 3f8's all 4 aspirations were positive, so we know it's doing something. We are going to have blood drawn again on March 25th to send to New York to test for HAMA. I am confident that the HAMA will be gone. If it is he will resume 3f8's, if not we will have to consider more chemo.
I will update again later.

I updated his photo album.

Please keep Dustin in your prayers for continued improvement.

Thursday, March 11, 2004 3:17 PM CST

We are back in New York, we were hoping to do the second round of 3f8's, unfortunately we are HAMA positive, so his body would kill the 3f8's before they could attach to the cancer. We saw Dr Modak today, he was very happy to see Dustin so active and looking so good. It has been 5 weeks since he has had any chemo. The plan now is to scan Dustin tomorrow and collect bone marrow, if the scans are improved they will test him again for HAMA and if it is gone he will continue with the 3f8's. If the scans are not the same or better he will then have to go back to chemo. I however feel confident that the scans and bone marrow will be better, it's just a matter of time for the HAMA to go away. HAMA is good and bad, it is good because it shows his body has identified a foreign species and is killing it and the cancer it has attached itself to. It is bad because it delays the next treatment. I will believe his body just needed some extra time to kill more cancer.

We will have scan results Monday or Tuesday, and bone marrow results Wed or Thursday.

Dustin is doing great!!!! We are staying at the Ronald McDonald house again, and of course his favorite room is the Game room. We went to the park today across the street from the hospital, he played for a couple of hours, then we went to see the Dr and get his MIBG injection. After we left the hospital we returned to the park. I have lots of pictures from the park. Dustin loves to have his picture taken as you will see when we return home and post some of them, he poses so well.

Please keep Dustin in your prayers for continued improvement.

Tuesday, March 2, 2004 6:09 PM CST

We are home, Dustin endured the treatment as well as he could, it is painful (more than I had expected). He went in to battle the cancer, he knew everyday it was gonna hurt, but he wanted to battle the cancer anyway. Not one time did he complain about going to the hospital for treatment. Dustin is such a strong little boy who just amazes me on a daily basis.

The treatment consist of 1 dose per day Mon. thru Friday (he had the weekends off) for 2 weeks. The 1st day was the most painful for him, he presented pain for 8 days, on day 9 & 10 he started having allergic reactions (hives, high fevers, & chills) usually when the pain goes away that means his body has developed HAMA (the body killing the 3f8's) He is scheduled for scans and bone marrow on 3/11 & 3/12. I will send his blood work up to NY on Thursday so they can run the HAMA test and let me know if he is to do another round starting 3/15. They will have the HAMA results on 3/9 or 3/10.
The results from the MIBG scan were good only a very sight area showed up in his left leg, however the bone marrow came back still just as involved as it was in December. So we are praying the 3f8s have an effect on his bone marrow.

Now on the weekends Dustin had a Blast!!! Our Dear friend Shirley gave us tickets to the cutest play called "Where's that bear", it is interactive with the kids in the audience, Dustin was dancing & singing having a great time. He still sings the song.
Shirley also gave us tickets to "Beauty & the Beast" Dustin sat and watched the whole play he just loved it. The seats were perfect, Dustin had an Isle seat so he could see really good.
Shirley also sent us off to the ballet to see Cinderella, Dustin really loves these shows. They were definitely the highlight of his trip.

Dustin was back to his old self and in school by Monday what a trooper he is, He makes his Mother very PROUD.

Please keep us in your prayers for continued improvement.

Friday, February 13, 2004 4:39 PM CST

Dustin had his bone marrow biopsy yesterday and his MIBG scan today, he did great both days.

Today we met Dr Cheung, he is the head of the Neuroblastoma team at MSKCC. He said Dustins scan looked great, he has very minimal neuroblastoma, just a very slight light up on that left leg near his knee (this is where he presented problems at his original dx) nothing lit up in his spine as it did before. The bone marrow has not been processed yet. He will start the 3F8's on Monday administered with beta glutan (boost the white cells to attack the cancer) He will have a CT scan on Tuesday.

Unfortunately Dustin was in contact with a child at the Ronald McDonald house that now has the chicken pox, so he had to have 2 shots today, and at the end of next week we will have to go into isolation which means we will have to stay somewhere else. Diane (the social worker at MSKCC) is looking for another place for us to stay.
Hopefully he will not come down with chicken pox, he is feeling soooooo good right now. He is very upset to hear we have to move out of the RMH and all of the parties, Yes they still have parties every night.

I am so proud of my little man he is such a big man in a little body. He is so happy to have 2 days off he gets to stay up late (not he doesn't have to go back to the hospital but because he doesn't have to go to bed early).

Dustin & I hope everyone has a HAPPY VALENTINES DAY!!!!

Please keep Dustin in your prayers for continued improvement.

Wednesday, February 4, 2004 5:34 PM CST

Dustins trip to New York is now planned, Thanks again to Shirley, Thelma, & Home Depot we have our flight scheduled for Feb 10th and returning on Feb 29th. Dustin is very excited to go back, although this trip is going to be very different from the last trip. I'm sure he'll still have some fun.
Dustin is doing really good right now. He has blood counts tomorrow, if he doesn't need blood this will be the 1st time after chemo his blood has recovered by itself (GO Dustin!!!!)
He has been running wild this last week, I am so glad to see him so active. I can barely keep up with him.

I will try to update tomorrow after blood counts.

Sunday, February 1, 2004 7:05 PM CST

Dustin is back to his old self again, he finally got over his sickness.

Dustins next trip to New York is scheduled:

He will have his bone marrow aspirations & MIBG Injection on Feb 12th, he will have his MIBG scan on Feb 13th. I am hoping and praying these scans show improvement. He will possibly begin the 3F8's the following Monday Feb 16th.

Our friend Shirley with the Chemotherapy Foundation is trying to arrange another with flight for Dustin & I thru Home Depot. Diane at MSKCC has us lined up to stay at the Ronald McDonald house again. Shirley & Thelma if you read this "thank you both so much" we are truly blessed to have your support.

Please keep Dustin in your prayers.

He has new pictures, I finally updated them.

Friday, January 23, 2004 6:36 PM CST

Dustin finished his 5th round of chemo today, he has had a pretty rough week. This is the 1st time since he started topetican that he got sick and stayed sick for several days. He was given fluids today because he has been so sick and unable to keep anything down. After they started the fluids he purked right up. I brought him home,he slept for a couple of hours, and now he seems to be feeling better.

I have placed a call to Dr Modaks office at Memorial Sloan to schedule Dustins scans and 3F8's, I am hoping that one day next week we will have dates.

Dustins next Drs appt will be Thursday 1/29 for blood counts.

Saturday, January 10, 2004 10:31 AM CST

Dustins Dr appt on Thursday went fine other than a low red count & platelet count. We spent the whole day Friday at the hospital getting transfusions. The good news is that they stopped his GCSF on Friday because his white count has already recovered from the chemo. We usually have to give him the GCSF shots for 14 days after his chemo. This round was only 7 days. His bone marrow is still weak even 2 years after 2 bone marrow transplants, his platelets are always the last to recover. Dustins little stem cells are obviously hard at work.

Dustins new tattoos have finally arrived so stay tuned for a picture update.

Tuesday, January 6, 2004 7:49 PM CST

Dustin is doing well, he and Bryan are back in school starting tomorrow. Dustin had me print his New York pictures so he could take them to school and show his friends. He is so full of energy, you couldn't tell he was sick if he still had hair. Tonight he has literally been bouncing off the walls. It feels good to hear him so happy and full of life. I used to take those moments for granted before, and try to slow him down. Now I find myself begging God to let us have these moments everyday, to let him be bursting with energy, to be soooooooo happy and care free, and most of all, pain free.

Rusty will take him to Egelston on Thursday for blood counts. I will post again then with an update.

Friday, January 2, 2004 5:41 PM CST

Today Dustin finished this round of chemo, the only side effect he seems to be having is with his blood counts. No sickness at all, he seems to be tolerating very well.
Now he has 2 weeks off before the next and hopefully final round of Topetican before the 3F8's. Dustins next Drs appt will be Thursday 1/8/04 for blood counts.

Dustin and Bryan barely made it to mid-night on New Years Eve. We all toasted to the New Year with sparkling apple juice (Champagne to Dustin). They both fell asleep within 5 minutes. I couldn't believe it they were both soooooo geared to staying up so late. I guess it's easier said than done.

We Wish Everyone a very Happy New Year!!!!!

Wednesday, December 31, 2003 6:09 PM CST

Dustin has just completed day 3 of chemo. He is feeling good and has lots of energy. His appetite is very good although he is having some weird cravings like Tomato soup & Fruit Loops for breakfast, he craved corn on the cob all day yesterday, after his chemo we stopped at Kentucky Fried Chicken and got four ears of corn Dustin ate 3 of them. Today he has eaten carrots all day at least a pound along with everything else from soup to popcorn to hamburgers. He has no interest in sweets at all. Thank God coz I surely wouldn't be able to keep up with him on sugar.

Dustin insists he will stay up til midnight tonight and drink a toast with apple juice for the New Year. Dustin says to tell everyone Happy New Year!!!!!!!

I updated some new pictures.

Friday, December 26, 2003 2:18 PM CST

Dustin and Bryan had a WONDERFUL Christmas. They are still trying to play with every thing they got. Dustin left Santa some cookies & milk, and some carrots and celery for the reindeers (Bryan doesn't believe in Santa anymore...)
Of course as most little ones do Dustin comes running in with these bright eyes "CAN WE OPEN PRESENTS? SANTA LEFT A WHOLE BUNCH!!!!!!!")It makes all of the hectic running around, up late wrapping, & hiding presents worth it when you see the suprise on their faces..

Dustin is doing well he is scheduled for Chemo again starting on Monday. One more round after this one before we're off to 3F8's. Wish us luck and keep us in your prayers please.

I will post some Christmas pictures soon.

Monday, December 15, 2003 6:46 PM CST

Dustin is doing fine and feeling fine. So far no side effects from the chemo. His blood counts were so good on Monday before the chemo, almost in the normal range. ThatÂ’s a good sign that his bone marrow has been hard at work. He has been eating really good, so he has lots of fuel for that energetic little body.

We are soooooooo behind on Christmas. We finally got some shopping done Saturday. We're Going to get a tree tonight. Slowly but surely were getting there.

Dustin has another Drs appointment on Thursday, I'll update again then.

Friday, December 12, 2003 9:06 PM CST

Dustin completed his 3rd round of chemo today and is feeling fine. No sickness and lots of energy.

I spoke with Dr Modak at MSKCC today, he was very pleased with the scans and tests ran on Dustin, he said he was having such a good response to the topetican that they may want to run a couple more rounds before administering the 3F8 antibodies. Since Dustin may only get 1 round of the antibodies it would be best to have minimal dieses when he gets that round. Looks like now maybe we will go back to NY in Feb. Not sure yet he will call me next week (Thursday or Friday) to let me know.

Please keep Dustin in your prayers for continued improvement.

Tuesday, December 9, 2003 7:16 PM CST

We made it back on Sunday, I called Egelston on Monday, they already had Dustin scheduled for his chemo. So he had ½ day at school Monday before Rusty picked him up for his 1st dose. He had his 2nd dose today and is doing very well, no side effects yet.

The plan is to do 1 round of chemo and return to New York the 1st week in January to start the 3F8 antibodies. This will be a 2 week trip. After this trip they will determine if Dustin develops HAMA (resistance to 3F8) to see if he can do another round.

We had a very eventful week in New York, Dustin had the time of his life, thanks to the Ronald McDonald House, and Shirley. They kept him entertained. We were able to watch the tree lighting at Rockafella plaza from the 6th floor inside a very warm office at NBC, and we saw The Lion King both compliments of Shirley, between all of this the Ronald McDonald House had a Christmas party every night.

Dustin really liked flying, when we took off he threw his arms up like he was on a roller coaster and yelled yahooooooo!!! He tickled everybody on the plane. He is such a card.

It snowed for 2 days, Dustin had just had his bone marrow aspiration on Friday the day the snow started so he didn't feel much like playing in it coz he was pretty sore, but that didn't keep him out of the arcade at the Ronald McDonald house. He just amazes me when he goes through those awful procedures and comes out like a champ.

I am posting some pictures from New York.

Friday, December 5, 2003 6:27 PM EST

Dustin is finally finished with all of the testing, Egelston still hasn't sent the Drs all of the info they need so we are returning on Sunday weather permitting, it's been snowing all day. The plan now is to return to Atlanta for another round of topetican and return to New York after the 1st of the year and start the 1st round of 3F8's.

Dustin had his CT scan today and Bone marrow aspirations, he did really well when he woke up, he was little groggy, but not violent as he usually is.

Shirley got him tickets to "The Lion King" for tomorrow @ 2pm, he is up and playing now so I assume he is going to feel like going.

Thursday, December 4, 2003 8:50 PM EST

Today we had our MIBG scan, we finished pretty quick so off we went to Time Square to see the largest Toys R Us I've ever seen. They had a life size T-rex of course you know Dustin loved that, it actually moves and roars. They have a ferris wheel inside the store we of course rode it. Dustin pick out a treat and out we headed to try to catch a cab, no such luck in the 5 O'Clock rush hour so we walked back to the Ronald McDonald house (30 blocks and 4 aves). We got back just in time for the christmas party (2 hours later).

Tomorrow we have bone Marrow asperations and CT scans it will be a very long day. I met Dr Modak yesterday he told me if we had all of the tests done and got all of the needed information they have requested from Dr Alvarado that he may want to go ahead and run the 2 week round of 3f8 antibodies starting on Monday. So I called Dr Alvarado and left a message since he was off yesterday for him to call me. Again he didn't return my phone call so I called Rusty and asked him to make a call to Egelston, he got in touch with Tammy (Dr Alvarados Nurse) she assured him she would fax the needed info today. I guess I will see if she did this tomorrow.

We are expecting bad weather Friday and Saturday, I wonder if people here clear the shelves of bread and milk. We may get to see some snow after all.

Gotta run now, we gotta get up real early tomorrow.

Hopefully I will get back in time to use the computer so I can update.

Monday, December 1, 2003 3:44 PM CST

Today we went on an adventure on the NY subway, we went to Grand Central station, and to see the Statue of Liberty, we also saw the Sphere that was in the world trade center. Dustin is having a blast! He has had so much energy in the last couple of days. Tomorrow we go meet Dr Modak and hopefully Dr Chueg at MSKCC (this Dustin is not exactly thrilled about).

The people here at the Ronald Mcdonald House say that 70% of the cancer patients that come here are Neuroblastoma. It is such a rare cancer, No one has every heard of it. You can imagine my Suprise when Rich here at the RMH asked if Dustin had Neuroblastoma.

They are having a christmas party here tonight @ 6:30pm, so I gotta go drag Dustin out of the arcade.

Keep us in your prayers, scans start tomorrow.

Sunday, November 30, 2003 3:12 PM CST

We are in New York and Dustin is having a blast at the Ronald McDonald House. They have a play room with arcade games (you don't have to put quarters in) I can't drag him out, good thing they have the computer room in the arcade. The people here are very helpful and nice. We went out for a walk today, we ate at the 3 Star Cafe. Tomorrow we are gonna try to see some sites. That is of course if I can get Dustin out of the Ronald McDonald house. There are a lot of kids that come here from all over for 3F8 antibodies. I have no doubt in my mind that we are here for a reason.

Since I have access to a computer I will try to update daily while we are here.

Wednesday, November 26, 2003 4:06 PM CST

We are leaving for New York Saturday night, The miracle worker Shirley Cox, arranged with Home Depot here in Atlanta to donate 2 round trip tickets for Dustin & I. Needless to say I'll not shop at Lowes anymore. None of this would have happened without the help of my Dear new friend Shirley.

This trip will be for scans & bone marrow aspiration, so he will not receive treatment that week, when we return to Atlanta Dustin will get his chem. at Egelston, after Dr Modak in New York assesses Dustins scans. I assume that he and Dr Alvarado will talk & come up with a plan of attack using the very promising 3f8 antibodies. I will know more after meeting with Dr Modak next week.

The ladies at Home Depot Thelma & Nicki, were able to book our flight for us at a very good time 7:35pm we will be landing in New York at 10pm. Thank you Thelma and Nicki!!!! and Thank you Home Depot!!!! What wonderful people you are!!!

The teachers at Youth Elementary School raised money to help us with expenses on our trip and the Principle Ms Herring matched the donation. Mrs Nash met me last night with the check so I could deposit it into our account before the holidays. She is such a sweet person with a heart of gold, she helped us with Bryan last year and here she is helping again this year with Dustin. Thank you Mrs Nash and all of the wonderful teacher at Youth Elementary, and Special thanks to Ms Herring!!!! I will be writing all of you special people a Thank you letter with some pictures of Dustin in New York when we get back.

I don't think I will have access to a computer in New York So it may be when we return before I update again.

Please keep us in your prayers.

Check out the new pictures.

Saturday, November 22, 2003 3:28 PM CST

OK Dustin has his scary tatoos on, and these are the ones he wanted to put on his site. Caution they are very scary.

Friday, November 21, 2003 8:41 PM CST

I wanted to post a web site if you are interested in reading about 3F8 antibodies: http://www.mskcc.org/mskcc/html/3215.cfm

Dustin is still doing good, eating like a horse. For the last 2 nights he has cleaned his full plate and had 2nds. He must be getting ready for a growth spert.
He is very active all day. He doesn't seem tired like he was when he 1st relapsed. His blood count recovered quicker after the 2nd round of chemo.

We have gotten Dustin and Bryan several tatoos, Dustin loves to put them on his cocunut (this is what he calls his bald head) he is such a card. I will take some pictures of Dustin & Bryan with tatoos tomorrow and post them.

Dustin is very excited about his trip to New York and the special medicine he will get. He said "if this medicine makes me well again can I play baseball?" He's been practicing and getting quite good, so look out spring t-ball.

Thursday, November 20, 2003 5:05 PM CST

We went for our appointment today for labs, blood count was good, so no transfusions this week.

I have a very special story to tell:

I had called the Chemotherapy Foundation out of my resource guide, I called in regards to a publication called Chemotherapy: Your Weapon against cancer. The day I called I got an answering machine so I left a message. To my Complete surprise a wonderful woman called me back, her name is Shirley Cox she is the Executive Director for the Chemotherapy Foundation. Her Foundation was involved in a symposium that week, she asked if I knew of Memorial Sloan Kettering Cancer Center, of course I have been trying to get Dustin involved in the phase 2 clinical trial for 3F8 antibodies and have seemed to get no where thru our Dr., so Shirley told me she would do everything in her power to get one of those Dr's to call me. I have tried to contact these Dr's before but of course you know they are very busy and don't have a lot of time to return phone calls or e-mails to some one they don't know. To my complete surprise 11/17/03 at 6:01pm Dr Modak called and told me he was calling for Dr Cheug at the request of Ms Shirley Cox. I spoke with Dr Modak about Dustins past treatments, and the complications with his 2nd transplant. Dr Modak agreed he thought these antibodies may be beneficial for Dustin. I have read many reports on these 3F8 antibodies and they show promise, I know they are not a miracle drug but if it will benefit Dustin I want him to have it. So Dr Modak told me to ask our Dr to call him. So at Dustins Dr appointment on 11/18/03 I gave Dr Alvarado a letter requesting him to call Dr Modak. When we went back today for counts I found out Dr Alvarado had not called Dr Modak. After a brief discussion I finally got Dr Alvarado to call him today. After Dr Modak Spoke with Dr Alvarado he called me to see when we would like to get Dustin to New York for an assessment. We have him tentivly scheduled for the 1st week in December. If the Topetican is working maybe the disease will be minimal and we can quickly get started on the 3F8's. Shirley Cox called me last night to let me know she has been able to secure 2 round trip tickets to New York, compliments of Home Depot in Atlanta. What a wonderful person she is to do these things for Dustin. The Lord works in mysterious ways. I truly believe he sent her to us. I will post a link to Memorial Sloan Kettering if you would like to see some information about 3F8's.

Monday, November 17, 2003 7:20 PM CST

Dustin seems to be recovering from his last round of chemo very well. He is very very very active and feeling good, he has not had bone pain in some time now thank God. His next round of chemo should be the week of Thanksgiving. His next Dr's appointment will be tomorrow for blood counts and labs. Hoping for a good blood count. Dustin says hello to everyone. Hopefully in my next post I will have some good news about another treatment.

Friday, November 7, 2003 7:59 PM CST

We had a little sickness this morning, after that Dustin was fine, we went to Egelston for his last day of chemo. We also did blood counts his red count was pretty low so he had a transfusion. Dustin is such a ham, he is finally warming up to some of the nurses he had us laughing all day. It was a long but entertaining day. We finally left the hospital at 5pm Dustin was feeling good, he is running around and bouncing off the walls. It does my heart good to see him so happy and pain free. I pray everyday that Dustin has these pain free days, we enjoy everyday with him.

We went to see Monsters Inc. on Ice last night the boys had a great time. They loved it, we had great seats at club level so they could see really good. Dustin wasn't sick at all last night he was just happy.

Dustin says Hello to Nana & Grandaddy.

Wednesday, November 5, 2003 6:08 PM CST

Once again today chemo went fine, Dustin is feeling really good and eating like a horse. No sickness so far. Dustin is going to work with me when he has chemo I work half days during those weeks, you really can't tell Dustin is sick as active as he is. Today at work I came out of my office and he is trying to kick the sales reps and our dispatcher, I guess those legs don't hurt at all any more. He hasn't told me of any pains. So I am assuming this chemo is working for him. I guess we won't know for sure til the 1st or 2nd week of December.

Wednesday, November 5, 2003 7:33 AM CST

Chemo went well yesterday, Dustin is still feeling really good. Thanks to Dustins Counselor Susan Perz for making him a sticker book to do while we wait for chemo, that was a wonderful idea, it makes time go by so much faster. If you know Dustin you know how he dis-likes waiting.

Dr Alvarados nurse gave us tickets to see Monsters inc on ice at the Phillips arena Thursday night. Dustin & Bryan are both excited to go.

Dustin says hey Aunt Cindy!!! Where is your big boy at (talking about Shaun)?

Monday, November 3, 2003 6:41 PM CST

Dustin was able to start his treatment today, his platelets were still low (30,000)(the normal range for platelets are 175,000 to 525,000) his red count is 8.1(the normal range for red is 11.5 to 13.5), and his white count is 3.07(the normal range for white cells is 5.0 to 15.5). Not bad for Dustin since his bone marrow is still weak from 2 stem cell transplants and he has marrow involvment upon relapse. Dr Alvarado was very happy with Dustins progress so far. Today we had a very long day at the hospital, we were there from 11:15am to 4:30pm just waiting to see the Dr., needless to say Dustin was beside his self and ready to go home. Dustin handled it pretty well and let the nurses do what needed to be done so we could go. He didn't even get nauseous after his chemo today yeah!!!! His hair is really starting to come out now, we should be seeing his coconut before long. We came home and I read Dustins guest book to him, he really enjoys hearing all of your messages to him.

I will try to update daily when he is getting treatment.

Saturday, November 1, 2003 10:58 AM CST

Dustin is feeling really good right now, he had a blast trick or treating, he went to every house in the neiborhood, he was soooo tired he could barely say trick or treat, but he insisted on going on. Dustin dressed up as Dracula & his brother Bryan was a Ninja. Check out the pictures I just updated them. They are soooo cute.

We have 2 days before we go for treatment again on Monday.
That is if his blood counts are good enough, we just stopped the GCSF on Thursday. Wish us luck.

I gotta go, Dustin is hungry again,(breakfast twice) I think this is a good sign.

Tuesday, October 28, 2003 8:21 PM CST

Dustin had an appt at Egelston yesterday for a blood count and to see if we could stop the GCSF injections. Blood count is still too low, he had to get platelets. Dustin feels good though he was laughing and having a good ole time as long as the nurses steered clear of him. The plan is to go back Monday for another round of high dose Topitecan ending on Friday. He tolorates it ok I guess, it makes him feel sick. I tried once again to talk to Dr Alvarado yesterday, he was having a very hectic day he had 1 child in ICU & 1 in the emerg. room. He did find the time to stop and say hey to Dustin, he told me he had e-mailed Dr Santana at St Judes he has not gotten a response as of yet. The first and foremost is to try to get Dustin back in remission as soon as possible, then we have to decide if Dustin takes accutane again.
Dustin picked out Dracula to be his Halloween costume this year, I hope he doesn't scare his self.
Gotta go it's late already....
I'll update sooner next time.

Monday October 13 2003

Today Rusty & I took Dustin for his appointment with Dr Alvarado to discuss the response he got from Dr Kushner in New York in regards to 3F8 antibodies and the treatment plan that goes with it. The treatment to be given before the 3F8 antibodies calls for very high dose Cytoxan, Dr Alvarado said he didn't think we should at this time risk it since Dustin had severe hemorrhagic cystitis and bladder perforation during his 2nd transplant. Cytoxan is very toxic to the bladder and we assume this is what caused the bladder problems before. After Dr Alvarado reviewed Dustins past treatments he doesn't want to risk the chance of Dustins bladder hemorrhaging again, he found a relapse treatment that consists of high dose topotecan this chemo is not toxic to the bladder. So Rusty and I agreed to start treatment today it will run 5 days of topotecan 2 weeks off for 3 rounds, all will be done as outpatient so Dustin will come home every night, then scans to see if this chemo is going to work. Dr Alvarado said we would be able to tell by Dustins counts and how he feels. Please keep us in your prayers for a good outcome.

Thursday, October 9, 2003 9:11 PM CDT

Dustin was diagnosed with Neuroblastoma stage 4 Jan. 30, 2001. He was treated with 6 rounds of high dose Chemo, Surgery to remove tumor from left adranal gland, 2 stem cell transplants, and 6 months of accutane. Finally May 2002 Dustin was declared NED (no evidence of diease). Dustin remained NED thru 2 seasons of T-ball, Pre-K, and started Kindergarden this year. Sadly Dustin has relapsed 10/02/03 his scans came back showing Neuroblastoma in his arms, legs, pelvis, spine, and rib cage. His bone marrow aspirations came back positive also. Dustin was admitted to Egleston to get his port reinstalled, bone marrow biopsy, and to start the 1st round of topitecan/cytoxin the plan was to go thru 5 rounds of chemo (top/cytoxin) and another stem cell transplant. on Monday afternoon I was finally able to speak with Dr Alvarado, I question him about MIBG treatment & or 3f8 antibodies, he assured me that the chemo had in the past worked well. Dustin got his 1st dose of topitecan/cytoxin Monday night about 9pm. Dustin had problems with Cytoxin in the past it made his bladder bleed, Dr Alvarado pretreated this and assured me that the dose was much lower this time. They also kept him well hydrated all night long this means up every couple of hours for the bathroom. Tuesday morning Dr Alvarado came in and said he went home last night & thought about my questions and thought maybe we should pursue 3f8 or MIBG treatment. He thinks it's OK to postpone Dustins treatment for a couple of days until he can contact the Drs running these trials. Since no major organs are effected at this point. When we got home from the hospital on Tuesday afternoon I had a message that John Engquist who is a board member of St Judes had requested further details about Dustins disease so we could see if St Judes could benifit Dustin. Now I just wait...........

Thursday, October 9, 2003 2:02 PM CDT

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