History

Sunday, October 12, 2008 7:49 PM CDT

Ok one and all.... Scan week is fast approaching.. And I just have to say, I am at peace.... I know, I know, that is craziness... but really, I just have peace... That just never happens...

I'm usually just a nervous wreck.... always..... I don't know why this is different....

We have changed plans which is one scary thing to do with this mean ole disease.. that should make me crazy with fear.. but really?? I am ok....

That doesn't mean that things will be all sunshine and roses.... It just means that for now... I feel ok... I'm not pacing the floors and making myself sick... For right now... I feel good.... for right now... i look at her and think that all things are possible.....

And maybe they are?????? For right now...

with all my love

rhonda

Wednesday, October 8, 2008 9:50 PM CDT

Ok ok so i'm finally gonna update!!!!!!! : )

I just have to tell this story that happened to my kids today!!!! You guys are seriously gonna love it!! It just made my day let me just tell ya!!

Ok, so Mike picked the girls up from school today and then went to Krogers afterward.. He went to use the restroom and the girls stood right outside and waited on him.. While waiting, this kid walks by with her mommy and asks her why Sydney doesn't have any hair... Commom.. happens all the time... Just kids.... ya know??

Well......... remember that my girls are by themselves.... This ever so smart and compassionate mother proceeds to tell her daughter (right there in front of my girls), that when kids get LICE their parents shave all their hair off and that is why Sydney doesn't have any hair!!!!!!

Ummmmmmmmm did your mouth just drop open??? Are you sitting there speechless.... in utter shock at the stupidity???

Yeah... mine too..... lol just amazing.... Sydney is just looking at me with these big eyes while Baillie is telling this story and then she just shrugs.... Thank You God that Sydney has such a good outlook on life and has such great self esteem!!!!!!! She really just doesn't notice or pay any attention whatsoever to the way people look at her...

I have learned over the years to also just let it go.. but man.. sometimes.........you really just want to start throwing punches....ya know?? this is my baby girl.... the one that I am fighting so hard for... the one that is fighting so hard.... for so long........ I just want her to be normal.... beg for it... pray for it.... want it so bad I can taste it.... ahhhhhhhhhhhhhhhhh

Sooooo, my friend Heidi sent a letter to the editor of the Knox News Sentinel.. It was great!!! But, like she said, the lady is probably too stupid to read the paper!!! haha... ok, that was mean...... I really hate being mean..... but, dangit!!!!! she was mean first!!! nah nah nah nah boo boo!!! : )

Oh, and Baillie said the Mom was standing there and making threats to her daughter that she was going to cut all her hair off like that!!!!! Wow..... what a moron!!!!

ok, there goes the mean again!!! See what happens when your kids has been fighting cancer for 4 years??? I cannot be responsible for what comes out of my mouth!!! haha

Ok... vented enough folks.... hope you are happy and all warm and cozy that I have finally updated!!!!! Maybe i'll make this a habit?? lol

ps..... scanfest next week!!!!!!! Start praying people!!!!!!!!!!

love

rhonda

Monday, September 15, 2008 8:44 PM CDT

Ok ok, so i'm an updating slacker!!!!! haha!!!

Things are soooo bloody good here in the Dudley household!!!!

I couldn't ask for better really...

This new treatment is the easiest by far that we have ever done in all of our 4 years of this crap!!!! This treatment consists of:

oral etoposide for 21 days and 1 week off
Velcade iv push on days 1 and 4 every 28 days
accutane on 14 days and off 14
lovastatin once a day every day
celebrex twice a day every day

she has had no side effects besides the dry skin from the craputane!!!! ha!!! And the velcade does cause some neuropathy after that last dose.. That does make her wake up at night crying out and her feet and legs do bother her, but it is short lived..

I hate to do that to her at all, but she has seen such a good response to the velcade that we hate to eliminate it just yet..it only lasts about 4 days and isn't horribly bad..

We thought about scanning next week but it really is too soon.. I guess i'm just a little antsy because we have changed courses and that is always a scary time.. We do need to wait atleast another cycle though to see how this new treatment is working..soooooo, until then we wait.... and pray........ and hope....... that we have made the right decisions.......

Baillie is doing great in 6th grade and is now in drama.. That is just perfect for my little redheaded drama queen!!!! haha I can't believe how fast they are growing up on me!!! Besides the fact that it makes me older too, it does seem like just yesterday that I was changing diapers!! And here Baillie is in middle school and Sydney is in the second grade!!!!

Sydney will be turning 8 on nov 26th and I am just blessed beyond words that we have reached that... Starting out at 2lbs 14ozs and then getting diagnosed with cancer before 4 is major things and she has turned out to be one incredible child considering her lot in life...

I say this alot and people look at me open mouthed with this look of horror on their faces... Sydney is perfectly normal... just like any other kid.. except a little cancer!!! Hey, without humor where would we be?? huh???

Sooo, yeah she has cancer.. and scars.. and a port in her chest.... and no hair.... yeah....... so what?? And.... she jumps and she plays and she dances and sings and shakes her booty and slaps nurses on the rump when she passes by them in the hall..... she hugs her favorite nurses and kisses them and tells them she loves them.. she makes the doctors race down the halls with her.. and the volunteers!!!

She goes to school and does homework and gets yelled at for talking in the hall!!!! She sings hit the road cancer one second and Hannah Montana the next!! She is 7 and all girl... She is beautiful..... and happy.....and yes..... she does have cancer!!!!!! Sooo Freakin What???? That is just one part of this wonderful.. special little girl....

She is living life to the Max by golly and I wouldn't have it any other way!!!!! We learn alot from these little souls.. We learn how to live..... live life to the Max!!!!! http://mikulak.blogspot.com/

I hope that you all are living your life like these children do.... hey, smack a rump or two!! haha it sure makes sydney happy!!!!!

love

rhonda

ps.. Say some special prayers for our little friend Madison Bailey who's Neuroblastoma has appeared for the 3rd time.. She just had surgery today...

www.carepages madisonbailey

Sunday, August 31, 2008 5:20 PM CDT

Hello all!!! We have now started new treatment for Sydney.. She will be getting oral etoposide for 21 days and off 7.. She then gets velcade iv push on days 1 and 4 every 28 days.. Lovastatin every day and accutane twice a day on 14 and off 14.

We are using the COMBAT therapy as a guide.. The velcade we have added because Sydney had such a good response to it even though it does come with a price.. She does have some neuropothy for a few days after that last dose.. but, all in all it is well tolerated... The accutane is not the easiest of drugs either as it causes severe dry skin and bad mood problems... She did take this for 6 months after initial treatment though so we know what to watch for..

I feel good about this new treatment even though it is scary to start on something different.. You just have to push foward though and have faith in what you are doing.. If it doesn't work then we move on to the next thing.. It's just all you can do really... hope for the best, but plan for the worst...

So far all is well... We will scan again in a couple of months to see if this is keeping her stable... or better!!!!!!!! that would be great!!!!

Tomorrow is our Sweet Abby's birthday.. She was born on 9/1/98 at 9:01 am.. She would be 10... We took out our little bag with her things in it and felt her little locks of dark hair.. Looked at the little dress she wore.. the blankets.. the little bracelet that was on her ankle..the little socks she wore with the little drop of blood on it where they poked her foot... her footprints.. so few things.. yet so precious... such a lifetime ago... yet seems like just yesterday..

Every year I let myself have this moment.. this brief glimpse back in time where I mourn for the great loss that sweet child was... I cry and look at her pictures.. then I put them all neatly away.. this is what we must do to survive.. I will never ever forget.. have never ever forgotten.. but we must find a way to live with these great hurts..

If I couldn't push through those hurts then I couldn't do what I have to do for Sydney.. For our family..

Soo.. I will have my moment.. my moments even and then I will continue to fight.. continue to celebrate the beautiful girls that we do have... Continue to feel blessed.. And hope that one great day I will see that dark haired little girl of mine and hold her and tell her how she was always loved..

love

rhonda

Wednesday, August 27, 2008 2:45 PM CDT

Well it has now oficially been 4 years since Sydney was diagnosed... and while that brings back alot of bad memories, I am just happy that we have her today..

I won't lie and say that these past 4 years haven't been hard ones... they have.. but there have been incredibly beautiful moments also..

I have gotten to see this sweet little girl turn into this caring, beautiful young lady and that is just amazing..

I refuse to allow bad memories cloud all the beauty that has been in our lives!!!

This is all a very challenging balancing act... staying positive while you fight for the life of your child..sometimes it gets the best of me.. sometimes I am so happy I could shout from the rooftops how lucky we are!!!

That is all just a part of this journey... the ups and the downs..

We have now started a new treatment... We are using the COMBAT therapy as a guide.. She is taking oral Etoposide for 21 days and off 7.. and accutane on 14 and off 14.. velcade on days 1 and 4 every 28 days and lovastatin every day..we are still deciding on the celebrex..

I feel really good about this treatment and surely hope that it keeps her stable... the plus side is that she can go to school on this treatment and won't be in clinic 5 days a week!!! Only time will tell if it will work for her..

I am a little worried today.. Her LDH came back over 800..we will repeat that tomorrow and hope that things are ok... He also heard a murmur while examining her monday and we are doing an echo and ekg tomorrow to make sure her heart is ok..that scares the crap outta me!!!

on a good note.. her weight is climbing by leaps and bounds!!!! she is 50 pounds now!!!!!! yeah!!!!! She was this weight when she relapsed and then got down to 39 and then went back up to 43/44 and stayed that way.. she has gained like 6 pounds in just a few weeks!!!! she is eating like a little monster!!! it is just amazing how good she looks and feels!!

all in all, i am very happy with our little Sydney...

My heart is breaking for other families though...please go to mikulak.blogspot.com and leave some kind words for this wonderful family... This is just breaking my heart... I wish... sometimes... I could just understand... and then..... maybe......just maybe..............it would make this unbearable pain.............just a little bit easier.....

much love to you all!!!!

rhonda

Sunday, August 17, 2008 4:17 PM CDT

Hello one and all.... It has been some time since i've updated..

Things are great.... I can't believe how great really... Just seems unreal at times..

When Sydney first relapsed it was bad.. really bad... We all know how bad it is when it comes back... after all that hard treatment... after how very bad it was..

The looks of pity you get.. that I just hate!!!! This dread... This awful feeling in your gut.. this doom... what are we going to do now?? Knowing how very bad a relapse Neuroblastoma is... Oh..... how that hurts...

Now it is 17 months later... 17 months since those awful words... that awful feeling... such utter heartbreak...

The end of this month will make 4 years since Sydney was diagnosed... 4 years!!! Wow... I can't believe how much your life can change in an instant....

How you can feel as if your whole entire world is falling apart and you somehow survive...

She is better today than ever... She is gaining weight by leaps and bounds.. She looks and acts like any "normal" kid... minus the hair ofcourse!!!

It just amazes me... She told me a few minutes ago that when she grows up and has her 5 babies that I will have to help her take care of them..... Oh..... man...... I know the odds of her even getting to that age are slim... and... even if she does, the odds of her having those 5 babies that she so desperately wants are even slimmer...but can't we dream?? Is that so bad??? To just dream for a while??? To just smile and tell her that she can have all the babies she wants and ofcourse I will help her take care of them!!!

Isn't that what you do?? pretend?? Is that how you really get through all the hard times?? Your head tells you the facts but your heart refuses to believe...... Instead.... you believe the impossible!!!!!

And my friends, that is how we live this impossibly hard life... we dream....

And maybe one day..... that dream will become a reality!!!!!

Baillie started middle school and is loving it so far.. I can't believe that she is that old!!!! They grow up sooo fast!!!! We just picked her up from Sibling camp today and she had a great time.. They had to write down things that bothered them and then throw balloons at it to get rid of it!! I think that was really good for her!!!

Sydney went to school every single day last week and kept up with all the other kids.. It was amazing really.. She just doesn't seem sick...And she just loved it!!!! I am so proud of my girls!!!!

We go to clinic tomorrow and will hopefully have a plan in place.. I will write when I know more... We really want to keep her out of clinic 5 days a week and let her be that "normal" kid!!

Thanks to all who think of us!!!!!

love

rhonda

Thursday, July 24, 2008 1:30 PM CDT

Good news today!!!!!!!! ct of brain looks normal.. just some deformity from surgery.....

Spot on pelvis is completely gone!!! Still small spot on skull under scalp.... but it is better...

This is truly a blessing!!!!! I knew I didn't see anything but that doesn't mean a whole lot considering i'm no radiologist!!!!! I guess I was right though!!! ha

Finished scanning today and then got a tune up of platelets before she goes to camp sunday..

i'm gonna hop off and do something as its just too hard to sit still when I feel sooo bloody good!!!!

There has been soo much sadness lately.. losing some of our most precious and loved friends... this doesn't take that away....but does help to have some good news after such devestation....

thanks to all who think of us....

rhonda

Tuesday, July 22, 2008 5:19 PM CDT

Hey one and all.... Things are moving right along here in the ole Dudley household....

Syd had ct of brain today and injected for the mibg.. We will do the long 3 hour scan tomorrow and thrusday the shorter one..

Hoping hoping hoping for great results!!!

Sydney is feeling rather well... We went up to clinic today and Seth from comunity relations had a camera there and she started dancing...ummm well shaking her tiny little booty for them and doing her i'm free dance which is just pee your pants funny!!!! When she's done shaking that little booty, she does this funny little bump with her hip and then throws her hands up.. shes kinda like a performing monkey!!!!! hahahhaha

I've been a little worried about Baillie.. The week of chemo while Sydney was getting checked in, they took Baillie's blood pressure just for fun because she's the well child and it made sydney laugh.. well.. it was high....hmmmmmm we took it the whole week and it stayed high.. 148/61.... She is 11 years old and 5 ft 3inches tall and 96 pounds... I think this is pretty high for her!!

We took her to her ped and it was a little lower and they did urine and it came back fine and he said just to cut out salt.... I don't know... just seems kinda weird to me.. He did order a vma/hva for neuroblastoma... More for me probably than anything and we just did that in clinic when Sydney was up there and Dr. Malik went ahead and ordered a bmp which was also fine.. Her vma/hva came back normal also.. which I knew it probably would.. but.. I needed to just make sure with Sydneys history....

Sooooo..... who knows... Dr. Malik mentioned maybe doing a renal ultrasound?? I keep fearing something with her heart.... yeah, i'm probably paranoid....it's just that she is my healthy child.. and it took soo long.. me begging drs to tell me what was wrong with sydney.. from the age of 17 months until finally diagnosed at almost 4.. I guess I just don't want that to happen again.. I just want to absolutely make sure NOTHING is wrong with her.. but.. I don't want to be in crazy stressed out mommy land either!!!! ahhhhhhhhhhhhhh

I personally think that a child with no family history of high blood pressure.. not overweight...no other risk factors.. should not be having high blood pressure for a week and a half straight!!!!!

I guess we'll just keep checking it and watch the salt and see.......

Anyway...i'll update tomorrow with results as I see them.. which always differs some from what the radiologist says!!!!

We are going to Atlanta on Saturday for a friends wedding reception.. She got married on a cruise ship that we couldn't attend so this will be fun.. And then we come home and Sydey is going to camp!!! yeah!! This is the first year that she can go.. she is soo excited!! the little ones only get to go for 2 days but she don't care!!!!

Then Baillie will be off to sibling camp next month.. this is the first year they will be having sibling camp and I think this will be a really good thing for Baillie.. To be around other kids who's brothers or sisters have cancer and be able to talk about that.. This has been going on for a long time and I think she needs this...

Pray for good scans!!!!!

and don't forget to keep praying for all of our little friends who keep fighting.....

ps.. Thanks so much Sherry Powell for the sweet card I got today!!!! That was so thoughtful of you!!!! Your family continues to amaze and inspire me!!!! We love you guys!!!!

until next time

rhonda

Thursday, July 17, 2008 2:46 PM CDT

Sweet Dustin Cobb has gone to Heaven... I am just heartbroken.. He fought a very long and very brave fight..

This picture is from one of Sydneys trips to Vermont and they were throwing signs and going "yo yo"!!!

What a great boy he was!!! He will be very missed!!!!

please visint them and leave kind words..

www.caringbridge.org/ga/dustincobb

r

Tuesday, July 15, 2008 11:34 PM CDT

Ok, so I feel a wee bit better...... just trying to fix my head..... you have to do that sometimes in this world... or you just won't get through it... ahhhhhhhhh

so....... all is ok here.. Syd has been kinda weepy at times and I surely hope its the velcade and not something else... oh.... the fun of scan time..... makes all kinds of things pop in your head...

we scan next week so maybe think of us?? ha and a prayer or two wouldn't hurt much either!!!

keep praying for all our little fighters out there.. there are just soo many and it is just really sad...

Katie Krize is having such a hard time and it really does just hurt...... www.caringbridge.org/visit/katiekrize

and keep Dustin Cobb in your prayers as well that those counts come up so he can get some sort of treatment...
www.caringbridge.org/ga/dustincobb

and don't forget to keep prayers going for the Bargers and Harrills as both Emily and Maddie are now in heaven.. from the same blasted disease.... www.carepages.com MaddieHarrill and EmilyBarger

And little Courtney McClure is at transplant for relapse ewings sarcoma and is pretty yucky and is getting her sisters bone marrow tomorrow so they really need some prayers... www.carepages.com Courtneyshope

And we can't forget Sam, Max and Will who's parents are trying so hard to find a better way for our kids....www.magicwater.org

man, if i keep going for all the kids I pray for and love I will be typing all bloody night and I really need to blow dry my hair and get to bed for clinic in the morning....soooooooooooo

Thanks to all who think of us....And Angie, thanks for always thinking about us and just caring so much... We love sweet Laura and always think about her too and hope she continues to do well..... she could use prayers too as she is fighting ALL and those steroids make her feel bad....www.caringbridge.org/visit/lauraarp

ok...... enough!!!!! ha

love

rhonda

Sunday, July 13, 2008 10:22 PM CDT

Well, it's about that time again..... I wish I had all these wonderful things to tell, but quite frankly my heart is just hurting....

There are alot of kids in need of some serious prayers and it is just breaking my heart...

please say some extra prayers for our little friend Dustin Cobb as he is having a hard time right now trying to get his counts up high enough to get some more chemo in him... It's all just a hard battle..... www.caringbridge.org/ga/dustincobb

and please continue to pray for miss Katie Krize as they have just found out she has progressed in her brain... They are taking her home on hospice and this has just about done me in.... she has fought for 8 years and this is just not fair.. there are no other words to say about it... www.caringbridge.org/visit/katiekrize

and sweet Maddie Harrill here at home.. She has rhabdomyosarcoma and has just relapsed and it is bad... they are trying to make her comfortable until she makes her way to heaven..Sydney just loves sweet Maddie as do we all who have come to know her.. she is just soo cute and sweet and this little dainty girly girl and this is just a really hard blow... especially so soon after sweet Emily went to heaven with the same disease... and.. Emily's and Maddie's dad both went to high school together... Maddie's parents were there when Emily died.. This is really all just too much.... www.carepages.com MaddieHarrill

I guess my heart is just hurting so much... I want to understand why this all is happening... I want to make it all go away.. I want these parents to not have to feel this pain...

Maybe tomorrow i'll feel like a more upbeat update.. until then........ I can only keep praying that one day.... it will all be better.......

Maddie just went to heaven...... My heart is broken.......

r

ps.. syd is scanning on the 22-24th..... please pray that all is well.....

Friday, July 4, 2008 10:09 PM CDT

Hello one and all!!! And Happy Fourth of July!!! Oh, and Happy Birthday to me!!! ha... ok... sooo not so ha..... I don't know why turning 35 has bothered me so much.... well, it bothered me until i actually hit it today and then it's just another day!! sooo.. i guess I will survive getting old after all!!!

My neighbor and friend Michele kept the girls all night last night and Mike was off work so we went to eat and to the mall and a movie!!! It was nice.. I was worried at first because we just don't ever leave them.. WE never ever have dates!!!! And we've been together for like a hundred years!!!! I don't ever really mind though because I love my girls and love taking them places with us.. It was nice though... just to have an evening where we kinda pretended that our lives were normal and we were just like everybody else....ha....

Sydney got a delay in chemo because of low platelets.. not low enough to transfuse, just too low to start chemo.. sooo we are due to start again monday...

WE are getting ready to change plans though.... it terrifies me..... to death!!! but.... we got her morphoproteomic analysis back from Dr. Sholler and it has some pretty amazing stuff on there!!! Very complicated but we are very hopeful that all this information will help us make decisions for her....

I really don't have a clue what we will start... DR. Malik comes back monday and after he talks to Dr. Sholler, hopefully we can figure out where next to go..

Cross some fingers that we find a good treatment that isn't too hard on her that will keep this thing stable and maybe even get completely rid of it!!!

Thanks to all who think of us!!!!

and please continue to say some prayers for all our little friends who are fighting so hard....

love

rhonda

Tuesday, June 24, 2008 8:10 PM CDT

Sweet Emily is now in Heaven... God please help this sweet family...

Well I guess it's been a while since I updated as Michele ever so nicely reminded me!! Ha! This is for you Michele and sweet Katie.. I sure hope she starts feeling better soon.. Please everyone say some prayers for this sweet girl as she has fought for ever so long and is soo brave..And they are also in Vermont with Dustin Cobb who is also having a really hard time right now.. He also needs some prayers...

www.caringbridge.org/visit/katiekrize
www.caringbridge.org/ga/dustincobb
please visit them and leave kind words....

And please everyone say some really hard prayers for our little friend Emily Barger as she is going through a bad time right now in the picu here at childrens.. This just breaks my heart.. This is one really sweet family..

www.carepages.org under emilybarger

Sydney is still doing really well... breezed through chemo this last time like we never did anything to her!! She continues to amaze and bless me every single day... Yes, she is kinda scrawny.. but.... that nifurtimox has a bad side effect of making them lose weight.. She hasn't lost any in a long time though.. she is maintaining her weight and eats like a pig.. I just have skinny kids and she is getting taller by the minute!!!

I am soo pleased that her scans were soo good and hope that when we scan again they will be even better!!!

I do know that looks are deceiving.. Sydney might be skinny and bald.. but she is one tough cookie and enjoys every single second of this life.. She never has a bad day!! She bounces off the walls and has more energy than all of us put together!!! Soooo... as long as she is still this happy.. and is doing this well and has this much fight in her.... so will I......

thanks for all who think of us and love this sweet girl of mine!!!

and please remember to say some extra prayers for all these kids who are fighting so hard...

love

rhonda

Tuesday, June 3, 2008 2:47 PM CDT

Like I suspected, the final report from the radiologist was not quite as good as what I saw with my own eyes!!! I guess that is why i'm not a radiologist!!!!! haha give me another year or so and I might just be!!! ha

Anyway, It says that there is some uptake still on skull with definite improvement from scans in march.. and I guess he did see the pelvis spot even though I couldn't... It did say that it was also improved... soooooooo..... while not quite as good as my mommy eyes saw.... it is very very good news anyway....

We are 15 months into this relapse and her scans have been stable this whole time..soooo.. to see such a huge improvement is pretty darn spiffy if ya ask me.... stable is good..... better is well..........better!!!!!! I mean you could hardly see the bloody thing light up at all!!!!

Can you tell how very excited that makes me???? lol It's just ever so good to see some big changes after all this time.. I really feel that it is the velcade added to all the other things that we are doing that has made the difference..

Sydney does topo/cytox for 5 days every 21 days and she gets zometa on day 2 and velcade on days 1 and 4..She also takes nifurtimox 3 times a day...

please continue to pray for all the kids who are fighting this mean disease and all the other mean diseases out there.. There are soo many....

We didn't start chemo as scheduled this week because Sydneys platelets were low.. we could have went in on wed and probably been high enough to start but we started with low platelets last cycle and we thought it a good idea to give her that week break...

Sooooo we are enjoying another week off from chemo and I am determined to get lots and lots done!!!!!! The girls just don't know what to do with themselves with school out and no chemo!!!! what ever will we do?????????? haha

Thanks for all who continue to think of us and pray for my sweet sweet girl..

with all my love

rhonda

Saturday, May 31, 2008 1:34 PM CDT

Well, I guess it's time I updated, especially since it appears there is really good news to tell!!!!

While I don't have the report back from the radiologist and it does tend to be slightly diffrent than what I see with my own eyes... The news is still good no matter!!!

I will say that there is a huge difference on this scan and that of 3 months ago!!! I could see nothing light up on her skull... maybe a faint spot still there if you look hard.. I'm sure that is what the report will tell... Some slight uptake on that skull...

I personally couldn't see anything on her pelvis either!! Soooooooo...... While i'm sure the report from radiologist will not say that she is "clean".... It is really good news anyway!!!!!

I was just in shock!!!! she had been having lower back pain and I tell ya, i was plenty worried!!!! Sydney just does not have pain!!!! I just knew that head was going to light up and I was fine with that as long as nothing new showed up.. Then I look up at the screen and see this head and didn't see that bright light at the top of it like we had been seeing for so long now!!!! I about hit the floor!!!

It was a wonderful day to say the least!!!! She was full of poop on thursday so I couldn't make out anything in that lower area to tell if there was anything on the pelvis or not. but on friday she had obviously taken care of that problem ha ha and you could see more and I couldn't see anything at all there with my own eyes.. Now I am no radiologist so i'm not sure what the final report will say on that..

regardless, this is all fantastic news!!!!!! Great great improvement!!!!!! Practically gone in my book!!!!!

I think the pain is from the velcade... and.. i think this big improvement is also from the velcade... i think when we added that with all that we have been doing, it just finally pushed it over the edge....just my opinion.. but..... we have been doing this stuff for quite some time and haven't seen this good of a response until the velcade....

Time will only tell.....

where do we go from here???? who knows.... I know that we still have to keep treating.. that is a no brainer.... this disease is mean.... really really mean... and we just have to find something to keep it at bay.. especially since it appears like she may be showing no evidence of disease before long....really.. the fighter will only get harder from here......

The trick will be keeping it gone.. and what will that consist of?? I really don't have a clue yet.... seems that some things work on some kids and some things don't.. I would love to be able to back off some.. but...... the fear in doing that is giving it a chance to get meaner again.... it's all a really hard battle.. finding something that won't harm her.. but will keep this thing away....

we will see.... still too early yet... and with Dr. Sholler and our Dr. here.. maybe.... just maybe we will find a way....

Thank you God for giving us this blessing.... WE really needed that good news after all this time.....

Thanks to all who think of us..

with all my love

rhonda

Thursday, May 22, 2008 3:24 PM CDT

Ok..... Last night was a bad night mentally for me... I'm feeling much better now....

Sydney seems to be feeling ok.. playing.. Who knows what is going on....

There is some good news to tell though!!! Her Hva/Vma which is a tumor marker, are down!!!

Last month her Hva was 19 and her Vma was 9
Now The Hva is 14 and the Vma is 4.1!!!!!!!! I don't think her Vma has ever been that low!!! that is very normal!!!!!! Yeah!!!!!!!

That is a very good thing... not everything.. but good nonetheless.......

We are going to do an x ray tomorrow and will probably need blood...

I had looked up the side effects of the velcade she has just been on for a few months now and bone pain and back pain could happen.. I really hope that is all that's going on...

We also will do a ct of chest, abdomen, pelvis and brain.. mibg and bone marrow aspirate and biopsy all next week...

We will have our answers soon enough...

thanks to all who think of us....

with all my love

rhonda

Wednesday, May 21, 2008 11:18 PM CDT

"Round and Round we go.. Where we stop... Nobody knows"........

that's just how i'm feeling sitting here late at night.. listening for Sydney... Worrying... wondering....

She has been having lower back pains all day.....

Oh please God... not this..... just let it be anything.... just not this horrible horrible thing... just please... not this.......

Just feels like i'm in this revolving door and it's spinning.. spinning round and round and all I want to do is get off.. I just want to clear my head and let it quit spinning for a second.. I just want to walk on steady ground...

Finally it stops... and I get off and everything starts to feel normal again.. I feel clear headed.. I take a deep breath and then i'm pushed right back in the damn thing again.. spinning...... can't breathe.... can't think clearly... just that stupid spinning.......

Have emailed with Dr. Sholler tonight and she is going to start thinking about a new plan just in case we need one, but I sure hope we don't...

I'm going to call clinic in the morning and hope they will get her in soon for a ct... they are already working on scans but maybe we can get in sooner... She is peeing an awful lot.. like, waking up every little bit and going.. running to hurry and go.... I surely hope that it's something simple like that....

And maybe then... and only then..... will the spinning stop....... even for just a little while.......

r

Wednesday, May 14, 2008 2:26 PM CDT

Sydney and sweet Tori

Please say prayers for the Houston family as sweet sweet Victoria made her way to heaven this morning.... They fought a very long and very hard battle.... I am just very very sad..... They are a wonderful family and this just breaks my heart..

you can visit them and leave kind words on carepages: victorialovehouston

r

Sunday, May 11, 2008 8:28 PM CDT

Mike is gone to work... My girls are tucked into bed, and I am sitting here feeling soo blessed...

Today has been a great day... Maybe not exciting by most peoples standards... but what a wonderful day nonetheless!!!!!

I never even left the house today!! It has been a pretty awful day as far as the weather goes... hard winds, rain and cold... But what a sweet, wonderful day!!!!

Today is Mothers Day, and to me..... I needed nothing more than just what I had.. My family right beside me...

Mike and the girls cooked me a wonderful dinner and got my favorite cake.. a carvel ice cream cake!!!! yummy!!! And as I looked around the table and ate the great food that they all cooked for me.. I couldn't have felt more blessed....

Sydney popped around the corner a dozen or more times today jumping out at me singing "Happy Mothers Day" to the tune of Happy Birthday!!!! Telling me that I was the best Mommy Ever!!!!!! Baillie, so proud of the dinner that she helped her daddy and sissy cook... Kissing me and telling me she loves me tons today...

What more could I ever want or need?? Does great riches ever make you feel as good as when your children put their arms around you and tell you that you are the best mommy???

It's so easy sometimes to get down when you have to face what we face on a daily basis.. And I truly strive to overcome that despair.. A person could almost ask themselves just what they have done so wrong to be given this awful lot to bear..

Instead, I ask, what have I done so right to deserve these two darling girls??? What made me so special that God chose these children to be mine?? Surely he knows that I am not perfect??? Surely he knows every little flaw that I have???

But he chose me anyway.. He chose me knowing all those things.. Knowing that I won't always do just the right things... Knowing that I have this need to do things just a little bit different that everyone else..

But also knowing that I will fight and keep on fighting... Knowing that I am not perfect.. Knowing that I will make mistakes.... But loving me despite it all...

And for today... Every single day.... I am thankful..... for God... for giving me this gift that are these children.. And for giving me hope....... That tomorrow.... will be just as beautiful.............. as today................

May you all feel just as blessed as I do today... And may you hug your children just a little bit tighter, knowing that God chose them.......just for you!!!!!!

love

rhonda

Thursday, May 8, 2008 8:29 PM CDT

This is Sydney's teacher Mrs. Lynch and some random little boy who obviously likes getting his picture taken!! ha

Well, i'm quite the slacker with updating lately... Guess that's not entirely a bad thing.. not having bad news to tell....

I do have some bit of good news though..Sydney got to go to school this week!!!! The kids don't seem to go here in ole east tennessee.. Not the kids on treatments like Sydney...Well.... I really felt that it would be sooo good for her to go and this was her last week that she can before school ends so I asked Dr. Malik and he said that it would be ok...

It took a wee bit of doing to get her there let me just tell ya... We had to get ahold of the homebound people to make sure that we weren't breaking any rules by letting her go to school.. The principal was working on that and couldn't get ahold of them so she couldn't go tuesday but by wednesday they called her and said it would be ok but sydneys dr. had to fax something saying that she could go to school.....

Anyway, she finally did get to go and has had the time of her life!!!!!!!! It has been soo sweet seeing how all the kids have reacted to her!!!!! They have all been sooo sweet!!!! When she walks down the halls there are kids that I don't even know giving her high fives and telling her that they are glad shes back.. she came home after her first day and said that all the kids wanted to be her best friend and she held up her little hand and said " One at a time please"!!!!!! I just about lost it that was soooo cute and sweet!!!! The kids in her class are soo protective of her too... Ms. Lynch was trying to get her to write something toward the end of her first day and she really does hate writing and she hasn't been to school all year and she was crying around asking her if she could take it home with her and do it and all the kids were yelling at the teacher saying that it's only her first day and can't she please just take it home with her.... oh how precious these little souls are.. who have no idea what they have done for Sydney.... done for me... my heart...

Sometimes children can be soo cruel.... but more times than not, they teach us all about humanity... I am blessed... I truly am..

I am anxiously awaiting word from Dr. Sholler about the biology study.. She was supposed to hear from him last friday but didn't... I am excited to see what he has seen in the lab about Sydneys tumor and what could possibly kill it..

We are due to start chemo on Monday... We have decided do just do a vma/hva and ct scan this time.. unless we think we need to do more.....

I am watching a movie at the same time as updating this so im a wee bit distracted..sooo... I guess I will leave off for the time being..

please pray for all the little ones fighting so hard against a battle they have no right to be in....

with love

rhonda

Sunday, April 27, 2008 6:34 PM CDT

Today my redheaded child turned 11... For all of you who don't know me personally I like to call my kids odd names at odd times...

Sydney is the bald kid and Baillie is the redheaded stepchild!! hahahahaha it's all good fun, and I totally mean nothing by it... Just had to clarify it before someone thinks that I am mean to my kids!!!!! lol

I have several others if anyone is interesed!!!! lol

Anywho.. My beautiful, sweet, funny, totally her own person since the day she was born child of mine is 11...

She wanted her room redone so we have been working on that.. It's been quite the challenge since we had chemo 5 days last week and mike works nights at the ole post office.. but... we have managed.. She wanted pink, bright green and purple on her walls!!!!! Yeah...... just what I thought!!!!! but it is looking alot better than I had anticipated!!!!! The top is pink, middle is green and the bottom is purple... We are ripping up carpet which we hope to find suitable hardwoods!!! Cross your fingers!!!!! : )

got a new floor lamp that has three lights on it that are pink, purple and green and is the perfect match.. She got a new wall clock and all these colors look great with all the Hannah Montanna stuff she got for christmas!!!!! It will be bright but really cute.. We are also going to draw guitars on the walls...

She got a pink acoustic guitar from a friend of mine and it just goes perfect with the whole theme of her room.

ok.. enough about that.. I will post pictures when we finally get done... oh, we are sanding and painting her furniture also!!!! Yeah, I hope to be done before she turns 12!!!!!!

Today brings back soo many memories... A time in my life when things were simple. I was just 23.. Had my whole life ahead of me.. That newness of a new baby.. That joy..

In her 11 years on this earth Baillie has lived with the death of one sister and the other that has had cancer twice...

I can't help but to wonder how this all is going to affect her... Is she going to come out of this a whole person??? I don't know... I hope.. I pray... but I just don't know...

I know that I love these girls more than life... I would give my life for either of them right this second... I hope that is enough.. I hope that she will take that with her.. I hope that she looks back and sees these hard times but also sees the love.. Sees a family that has been hit with soo many hard blows, but has come out of it stronger...

I hope that she learns that even if life hits her over and over again that she can survive.. she can be stronger than she ever imagined she could be.. I hope that we have given her the skills to cope... the ability to bounce back when things are rough...

I hope.....

For now.... I will do what I do everday... I will survive.... I will get through all these things that are thrown at me.. and hope that it will all somehow be ok.......

Thanks to all who think of us.......

love

rhonda

Monday, April 21, 2008 0:08 AM CDT

Here I am again with another 1am update!!! That's just the way I roll!!! haha

We are all doing great and the countdown is on for Baillie's 11th birthday!!!!!!! Wow I can't believe my baby is that old!!! Or is it me that's old??? Oh man!!!!!! ha

Sydney is feeling sooooo good that it just amazes me!!!!! You just add a little hair and you'd never know the kid was sick!!! She is just one amazing kiddo!!!!

We start our 5 days of chemo this week... sighhhhhhhh was just enjoying our time off!!!! Oh well... atleast she has felt sooooo goood!!! She even got to go swimming today at our gym pool before she gets her port accessed for the week and can't swim.. They had a blast!!!!

We were able to send her tumor off that we took out when she relapsed a year ago to the Dr. in Texas... I amm sooo excited about that!! On one hand, I would have really liked to have been able to biopsy so we can see what is going on exactly with the tumor she has now... I am pleased that they could use the older tumor sample for the biology study....It could tell us alot about her tumor and maybe what might kill it... this was all made possible thanks to all the parents from Magicwater.org and Dr.Sholler.... Magicwater paid to have it sent off also.. this is just amazing to me... The cost is 2,000 for the Dr. in Texas to do this biology study and there is a fund set up for it through magicwater and I am just blessed to have them..

We should know something within the week and I will post when I know more....

I guess I will try and get some sleep before our busy week begins...

Thanks to all who think of us..

love

rhonda

Monday, April 7, 2008 11:41 PM CDT

Hi one and all here I am again with one of my close to 1am posts!!!!

We are all doing well in the Dudley household.... Sydney finished her week of chemo and did well... We go back to clinic on wednesday to check her counts and possible transfusions... We have to transfuse her platelets before they get too low because she likes to nosebleed... For like 4 hours!!!! Not a pretty site let me just tell ya!!!!!

Baillie boo is doing great and will be turning 11 the 27th of this month.. She wants her room made over so we have that to look forward too!! Not too sure what she wants yet besides black and pink and purple paint!!!!!! ummmmmmm okkkk..lol and polka dots!!!! We'll see how that works out!!!!!!

I've been thinking and thinking here lately about how Sydney is doing and what will come next for her.. Maybe i'm a little high strung.. Maybe a little bit impatient.. I just keep thinking about how well she is doing and how very lucky we are... but wondering...... when it will take off again... I'm not being negative.... This is just what Neuroblastoma does.. This is just the facts..

When you're a parent and you love your children soo much... you can never imagine something bad happening to them.. it's just impossible to grasp that.. but...... when you're a parent of a child with cancer.. especially Neuroblastoma and how very mean it is.. you just don't have a choice... you have to find some way to come to terms with it.. have to know those facts that are soo hard on your heart.... If you don't, you can never make the right decisions for them.... I don't think anyway... If I lived in a world where I just couldn't accept what is happening, then how could I rationally make all the best decisions for her????

That's where it all gets tricky.... making the best moves.... at the right times....

I think we are ok right now.... we have added this new drug and we really need to give it some time to see if it's going to push this mean thing over the edge and get her to no evidence of disease..

My mind just can't help but to plan ahead.. think of that next thing to help her....

This has all stemmed from the day I met Dr. Giselle Sholler... All the help and endless emails back and forth to Neil Hutchison from Magicwater....you change... I have changed.... When you see what these people are doing.. How they are dedicating their lives to fix these kids.. There is just no going back... There is a better way out there and anything less is just not good enough...

I'll never forget when I was worrying soo much about going to Vermont.. Scared to take that chance and stay off chemo for 20 some odd days and just do Nifurtimox... I wanted to take the chance but was afraid her cancer would progress..Then I got an email from Max Mikulak's mom that told me to just take that leap.. That we could always back out but it was better to try it and stop than have regrets later... That did it for me.. That made sense... I thank God every single day for her.. For giving me that push I needed to make that decision for her.. One that I was letting fear keep me from making... This is a mother who is also fighting for the life of her own son.. It brings tears to my eyes.. even now... How all these families from different backgrounds can come together and help one another even when their own lives are in such tumoil...

This is why I won't settle... why I will stay with these people in what they do... because they are helping to make a way for our children.... Our future........

Thank you all for trying to find a better way....

with love

rhonda

Thursday, April 3, 2008 0:51 AM CDT

Seems that I always get the urge to update when it's around 1 or 2am!!!! Guess because sleep eludes me and i'm usually thinking about my life and this is a good outlet to get it all out so I can focus on tomorrow...

We are doing 5 days of chemo this week..So far Sydney is doing ok.. She has cried in her sleep for the past 2 nights and said her ear hurt and he looked at it today and she has an ear infection... What a relief!!!

To most people with children, that would seem silly.. not to a cancer parent!!! An ear infection is wonderful compared to all the other horrible things that went through my head when I heard her cry out all night for 2 nights!!!!! AAAAAAAAAhhhhhhh To live in that world again, where all I have to worry about is ear infections and colds...

Sydney is really doing well.. stable... even better.... and I do hold on to that.. but.... .there is this little voice in my head that keeps wondering when this mean thing is going to take off and become resistant to this chemo...

We have done so much of it... 10 or 11 rounds so far... I'd have to go and look to be absolutely sure... but.... it does seem like alot to still have those same 2 spots!!

Honestly?? I could live with this for years.. even if it just stayed the same... I really could... if.... .I knew that it was going to stay that way... the problem is we just don't know...

you want to continue with what is working.. but.. you wonder how long it is going to continue to work.. Neuroblastoma is really bad about looking like it is backing off or gone, only to progress wildly when you least expect it.. just when you let your guard down...

It's all a really hard battle... like I said, you hesitate to stop what seems to be working.. but, I really don't want to wait until it stops... almost makes you want to move onto something else before it gets the chance.... but... you run the risk of doing something else that won't work as well as what you were doing to begin with....

I don't know... the problem is there just aren't any cut and dry answers...

We have added another chemo (velcade) and hopefully that will give this mean thing the push it needs to finally back off...

I guess i'm going to finally give it up and get a few hours of sleep..

please continue to pray for all the children fighting this battle.. and all the parents trying so hard to find a way....

to make it all better............

love

rhonda

Friday, March 28, 2008 10:31 PM CDT

Hi all, I'm sitting here alone..Mike is at work.. the girls are sleeping... these are times I tend to think too much...

I just have a really heavy heart the last few days.. I try soo hard to live this life and not let the weight of this nightmare we are living get me down.. but there are times... when it all just comes crashing down on me.. all of the sudden...like i've been hit with a blow in my heart and no matter what.... the ache just won't go away....

There are so many of us that are fighting this same fight.. and even if we have never met.. we have a bond that is as strong as if we had known each other for years.. like we are in this secret society that nobody wanted to join but once you do, you are never quite the same.. when they feel pain and are going through a hard time, you feel it too... because no matter what.. you know, you could be there at any second.. that could be your child...

you are never the same... ever.... you are more acutely aware of just how precious this life is.. you live harder, love stronger...all because you know that you are in a race... a race that you might just not win....

I never let myself forget that..

The battle lies with knowing the facts........but living as if you don't...

Being as educated as you possibly can.. making informed decisions...knowing what you are up against... but living happy despite it all....

please say some prayers for all the kids fighting this battle.....kids who are living..................despite it all......

www.magicwater.org where you will find links to Sam, Max and Will who are all bravely fighting this battle...Who's parents are extremely educated and are helping us all try to win this fight.... who are all living......despite it all......

go see Katie Krize at www.caringbridge.org/visit/katiekrize where you will find a girl who has been fighting this battle for a long time and who also continues to inspire us all....

and please say some prayers for a local girl here Hannah Williams who has relapse Medulloblastoma and has been told that there is nothing left to do... She is an amazing girl and this just breaks my heart..

And sweet Victoria Houston.. I just can't say enough about this family.... They show me and everyone who will take the time to notice that no matter how bad things might seem.... you never give up... never stop believing.... They are very smart.. very informed parents who will never stop believing in that miracle for their sweet girl... carepages: victorialovehouston

And Austin Melgar and his family who are going through things that no parent should ever have to go through.. They are in Vermont and although we have never met them.. we are praying with them for that miracle for their sweet boy... www.caringbridge.org/visit/austinmelgar

There are soo many more..... All fighting.... all living..... all leaving their mark in this world... teaching us all how to live this life..... If only we open our eyes and see....

r

Wednesday, March 19, 2008 5:57 PM CDT

Well, it seems we won't be doing the biopsy after all... There just isn't any soft tissue there to biopsy.. It is all on the bone which makes things more difficult.. I really hesitate to take out more of her skull unless we absolutely have to...

WE do have the biopsy we did last April that we are going to try to send off for this biology study..

I think sometimes things just work out for a reason.. I wasn't overly anxious to go into her skull again, especially if we have to remove more skull so, this works out for the best..

We went to clinic today and her counts are still low as she is still recovering from chemo and we did add another chemo to the mix so it might take a little longer.. They weren't low enough to transfuse so I hope that they will be making their way up soon so we can start chemo on time..

They had fun today in clinic though.. Baillie is off for spring break so she went with us.. Somebody brought in the easter bunny and nice treat bags and big ole stuffed rabbits for them.. They also had pizza for us all and cupcakes!! It was really nice!!!

then Sydney got an absolute darling yellow cat pillow that goes all the way around her neck like a hug that a mom to a sweet little redhead Laura Aarp made for her.. It was soooo sweet and she really loves it!!! Thanks guys, that really made her day!!! Hope Laura gets to feeling better!! She and her sis are awfully cute!!!! I will take a pic and post it later....

I am going to go for now.. Its raining buckets out there and the wind is blowing something awful!!! it's a good day to just lay around and watch movies!!!!!

We go back to clinic on friday to check counts and are due to start chemo, even though it would be nice to start on monday and get back on that mon-fri schedule again.. just don't know if she will be ready 2 days early or not..

Mike sister is coming this weekend from Ky and the girls are soo excited!!!! they always love when Aunt Angie comes
!! Probably because she spoils them rotten!! And lets them by with absolutely everything!!!!!!! lol

thanks to all who think of us

love

rhonda

Monday, March 17, 2008 6:39 PM CDT

Well, it's a tired out momma writing this update today!!!!

We ended up in the ER last night about 1am and didn't make it home until almost 9 this morning!!!!

I was sitting in the bathtub about 11 and Sydney came running in there with her nose pouring blood!! I jump out and start holding pressure.. First let me just say that with good counts, Sydney is one heck of a nosebleeder!!! Take away those counts and you are just asking for trouble!!!

She vomited blood like 3 times and I held and held.. She screamed and screamed.. I held and held some more!!! Nothing!!!!!

That dang thing just kept pouring like a faucet!!!! Finally after almost an hour, I just new this wasn't going to stop.. I had to call mike home from work and made a call to Dr. Vicki and off we go to the ER....

Not the best place to be with a kid with no counts to begin with, but what do you do at 1am?????

We get there and that mean ole man at the counter said that they didn't have a referal from Dr. Vicki and I was like, ummm ok.. but she needs to be seen!! pronto!!! The docs usually call ahead to let them know we are coming but he said they didn't get that call... whatever....

Sooo, he points to a mask and tells us to have a seat....ummmmmmmm ok.....she is profusely pouring blood out of her nose and you want me to mask her and sit in the waiting room with a bunch of sick kids??? Nopie does it big fellow.....

I asked him if he really wanted us to sit out there and he just pointed and said yes.. I told him no.. that there was a reason that she was in the er in the first place and I wasn't sitting in that waiting room!!!!! He told me that we would be next and i just refused to move.. he them pointed to one of the check in rooms and said we could go in there. and he got really mean with me and made that poor thing stand on the scale with her nose pouring blood all over the place and just generally a mean person..

I just don't get it.....

anyway... her platelets wer 10,000!!!!!!!!! and her hgb was 6!!!!!! soooooooo..... we got blood and platelets!!!! they didn't send us to a room which would have been alot nicer for us because we could have all napped.. we sat in the er the entire time in 2 straight back chairs!!!! My eyes were crossing I was soo tired!!!

her nose didn't stop bleeding no matter how much we held it and what we did to it until amost 3am!!!!! It was quite scary let me just tell ya!!!! She threw up tons and it was pure blood!!! just not a good night!!!!

She is great now!! And just as pink as she can be!!!! Oh, what a little blood does for a kid!!!! lol

Ya know.. i've always been the nice girl.. too nice sometimes.. always letting people say anything they want to me... but now?? things change..... when you are fighting for the life of your child.. you learn to get a backbone... you stand up for that child because you have to...

anyway.... i'm still pooped out... Sydney is just grand.. singing sing star and having a blast!!!! Me??? i'm ready for another nap!!!!

love to all who think of us!!

rhonda

Friday, March 14, 2008 9:08 PM CDT

Ok, i'm gonna try this again.... I was updating earlier on the laptop and the doorbell rang and it was Sydneys new hair and we got so excited that I forgot I was doing anything on there and it got closed off!!!

soooooo.... we are doing good..... Mike finally put the trampoline up that has been sitting in our building since we moved in this house over a year ago and the girls were very excited!!! Even though there was a reason we didn't put it up to begin with.. Sydney had those fractures on her spine and we just didn't think the trampoline was such a good idea with a kid that has weak bones from all the crap we have done to her..... anywho.. up it is.... and oh what fun they had!!!! even though we kinda spoil it for them because we only let one kid jump at a time and im standing there watching Sydney's every move to make sure she doesn't fall or anything and I get yelled at for having my sick kid with low counts on a darn trampoline!!!!! Oh those fun spoilers!!!!! haha

We got through chemo and i'm sure she is going to need some sort of transfusion on monday.. probably blood and platelets if I had to guess.... We added a new chemo velcade and she got hit kinda hard.... She is feeling great but she is pale and bruised some......

Dr. Malik is working on getting a biopsy done on that stupid place on Sydneys skull... The neurosurgeon is out of town until Monday but he thinks we can get in pretty quick.. we are going to try and do it before she starts chemo again when her counts are up....

I do hate going into her head again but am ever so excited to get this biopsy and send it to Dr. Sholler and then sent to Dr. Brown in Texas for this biology study..

Anyway I keep leaving and coming back to this update so now I forgot anything I was planning to write so im just going to end this now..

Maybe i'll remember more tomorrow!!!

love

rhonda

Wednesday, March 12, 2008 11:53 AM CDT

Well, the scans did show improvement.. Not as much as I saw with my own eyes... I really thought it looked tons and tons better...

The official report is that there is improvement on skull and pelvis.. I'll take that!!!!

For this disease, stable.. no progression is a blessing!!!!!

We are all doing good... we started a new chemo this time so now she is getting: topo/cytox/zometa/velcade/nifurtimox

The topo/cytox over 5 days outpatient.. the zometa she gets on day one only of chemo..

The velcade she gets on days 1 and 4 of chemo.. and the nifurtimox she takes 3 times a day every day...

we get 2 weeks off and then start all over again..

her counts were pretty low already when we finished chemo sunday... probably the velcade knocking them down even more...

she is feeling great now though...

Baillie is doing good and is getting excited about turning 11 at the end of april... can you believe my baby girl is going to be 11??? goodness where does the time go??

Mike is alright I guess..lol work work work....

me?? i'm great... ever so happy now that those dang scans are over and done with.. I was feeling pretty rotten for a few days!!! Your mind can do seriously bad things to you if you let it!!

Enjoying this beautiful weather and soo looking forward to spring!!!!!!!!!!!

really????? just enjoying this beautiful.... precious....life............

rhonda

Friday, March 7, 2008 1:27 AM CST

Well, we still have to wait on the report from the radiologist but...... it looks like really good news to me!!!

If that spot on her pelvis is still there, it is so faint, I could hardly see it.....

That mean ole place on her skull looks soooooo much better to me!!!! I mean, the difference between this one and the one at the end of November is huge!!!!

Now, I am no radiologist..but.................... I feel pretty certain that he is going to say that it is alot better!!!!!

I really wonder now, if we will even have enough tissue to biopsy...... I am mixed on that.... While it is always great news to have too little disease..... I was really excited that we may get the chance to learn more about her disease...

Plus, we were going to be able to let Dr. Sholler test her disease in her lab which we couldn't do before because she had no bone marrow disease when we went to Vermont the first time...

Again, this is all really good news.... I would much rather have just a little bit of disease....

I feel tons and tons better and feel like I can breathe again... I was feeling soo stressed...

It's weird... I really felt (and still feel) that we were doing the right things for her... Really believe in this treatment...

I never questioned that part.... but... scan time is just soo stressful.... Just remembering how bad and scary it was that day we learned she relapsed and all I could do was scream over and over....Then when it progressed....

Those awful feelings are hard to put out of your head... This thing is just so mean..you really just never know what it is doing in there... thats what's so scary... you scan and get to find out.. and it isn't always what you want to see...

but sometimes.... if you're very lucky......... you get to witness miracles..... if only you will look closely enough........ open your eyes to more than the bad things....

Sydney is a miracle.... just the fact that she is alive today..... almost a year from relapse........

Is truly.................. a wonderuful...................beautiful........................

miracle...........................

thanks to all who think of us!!!!!!!!!!

rhonda

Wednesday, March 5, 2008 9:09 PM CST

Ok people.. This is very important to me!!! And if you love us, you will do as I say pronto!!!!

Go to magicwater.org and see all the wonderful things they are working on for our kids.....

This is one thing I can do to help... Spread the word...Make the world (or my small part of it) know about a group of people and some pretty fantastic docs who are paving the way for all of our kids!!!!!

I wish I had the funds to give them so I would know I was doing more to help.. but you all know that just isn't the case!!! Ha Ha!!!!!

Making people more aware...Showing the world....... That relapse Neuroblastoma doesn't HAVE to be a death sentence!!!!

Standing up for our right to better treatments for our kids...our life!!! Our reason for living....

I truly believe that these people are making a difference in this world....

If you have oodles of money lying around... And I know that there has to be a few of you that do!!!! haha

please consider making a donation to a cause that is so very dear to my heart!!!

A cause that could save the life of our children!!! And the children yet to come!!!!!!

Read all the wonderful things that they are working on!!!

Go now I tell ya!!!!

www.magicwater.org

again

www.magicwater.org

read.......be informed.....................be impressed.....................give some of your hard earned money!!!!!

help make a difference!!!!!!!!!!

oh yeah.......... keep praying....mibg tomorrow......

love love love

rhonda

Wednesday, March 5, 2008 3:33 PM CST

Got to start chemo today!!!!!!!!!!! Yeah!!!!!!!

her anc was over 1400 and her hgb was 10 and her platelets were over 100!!!!!!!

We started velcade which is new for sydney...

We scan tomorrow......

start praying!!!!!!!

We need it!!!!

love to all who think of us!!

r

Wednesday, March 5, 2008 1:24 AM CST

Here it is 2:35 and I am up updating this caringbridge.... We have clinic in just a few hours and I really need sleep but just can't..

I really hope we can start chemo tomorrow....I think that will make me feel better.. I really really hate getting delays.. knowing that this thing could take off at any time...

We were supposed to inject for the mibg scan today and then scan tomorrow and thursday but got a call from Barry that the dye didn't come in so we will inject tomorrow and scan thursday and friday.......ahhhhhhhhhhhhhh what a week!!!!!!!

We are going to add a new drug to the mix called velcade... We will be doing topo/cytox/zometa/velcade and nifurtimox....

And we still hope to biopsy as soon as we get the results from this mibg scan.. we need to know that we have enough viable disease to biopsy to send to Texas...

Send some prayers our way the rest of this week that things are atleast stable...NO NEW SPOTS!!!!!!!!!!

And pray for sweet Baillie who I hope is not suffering in this household where things are so uncertain... It has to be hard on a kid soon to be 11 who knows alot more now... I just hope that we are doing right by both of our girls.. Its really hard sometimes.. To feel like you are doing enough.... probably aren't doing enough....always hoping you are doing enough......

Ok....... tiredness is creeping upon me........... just enough time to get good and asleep.... to just wake up and start it all over again!!!!

love to all who think of us......

r

Monday, March 3, 2008 5:01 PM CST

Well, we were supposed to start chemo last wednesday but didn't because her platelets were 43 and since we've been off study where we only needed 50 to start, our dr here wants her platelets to be over 75...

Sooo.... we came to clinic today and her platelets were great...everything else great...but.........her anc had dropped... it was only 551 today...... ahhhhhhhhhh I really really hate delaying chemo!!! Just makes me really nervous that this stupid thing will have a chance to grow!! I wonder if she is trying to get sick or something and that is why her anc has dropped......

anyway, we inject for mibg scan tomorrow and then scan wed and thursday... I would really prefer to just biopsy already since that is what this is all about.. but....our dr wants to scan before we biopsy...which is fine... just kinda extra stress.. I really don't think we'll have our true answers until we get that thing out of there and see what is really going on... and so now I get to spend this whole week worrying about this stupid thing on her head and what is going to light up and what it all means.....

I am really excited about this biology study and what it could tell us about her disease and to tell the truth, my frustration level is kinda high, becuase I just want to biopsy and get it over with....

soooooooooo............................ I don't know.... I keep looking at her head and I keep thinking it looks bigger to me... and what does that mean?? is it swelling because it is dying?? Is it worse?? What does that ct scan mean???

I was up until after 3am this morning..just going in her room..looking at her...feeling her head......driving myself crazy.......

I hate feeling like this... .this is not who I am... but, I think I am just soo desperate to fix this thing...

This month will be a year since relapse and while I do know that is huge for relapse neuroblastoma....still.... I worry....... why is this thing still hanging around on her head??? why won't it just go away already?? we have poured the chemo in her... taken nifurtimox nonstop... done radiation...... and it looks bigger??

Oh............. I just want to walk out of an mibg scan smiling......ya know??????

I really really believe in what we are doing...Believe in Dr. Sholler and what Magicwater is doing to find new treatments for our kids.. I really believe that thinking outside of the box and getting newer, less toxic treatments is what is going to fix these kids.....

It's just..................the waiting....... the not knowing from one day to the next.....

really????

it's just bloody scan week........................

thats really my problem...........

I hate it!!!!!

I really....................really.............hate....................scan week!!!!!

ahhhhhhhhhhhhhhh

it will be sooo nice to get through this week and have nice, normal, sane thoughts again!!!!!!!!!!!

oh and her vma today is higher..... it was 5 last time which is really good!! Today it is 9..... ahhhhhhhhhhhhhh ok, 9 is still considered within normal range............but................. I just don't want to see any changes at all.................

I guess I should just be happy it's not in the hundreds or anything!!!!!!!

see.....already had a good thought!!!!

ha
ha

ha
ha
ha

love to all who think of us!!

ps..... Sydney is older now and is reading better and really enjoys reading what people post...so....if you stop by....... sign already!!!!!!!!! : )

r

Saturday, March 1, 2008 12:38 AM CST

Ct Scan shows some increased
thickening and more mottled appearance of the right frontal bone around her
previous cracniotomy site

What the *&%$ does that mean???????????????? AAAAAAAHHHHHHHHHHHHH

I surely hope it is changes from doing radiation or maybe this stupid thing dying?????????????????????

I HATE SCAN WEEK!! I HATE SCAN WEEK!! I HATE SCAN WEEK!! I HATE SCAN WEEK!! I HATE SCAN WEEK!! I HATE SCAN WEEK!! I HATE SCAN WEEK!! I HATE SCAN WEEK!! I HATE SCAN WEEK!!

r

Wednesday, February 27, 2008 9:59 PM CST

Ok, so things have changed again....

We are not going to Vermont.. Thought it would be easier to do everything here..

we did not start chemo today.. her platelets are not quite ready so we are just going to wait until monday to start.. that will put her back on that mon-fri schedule again which is better..

The plan for now is to start chemo on monday and then do an mibg scan wed and thurs.. we did a ct scan today but haven't heard anything about it yet..

I really just want to do the biopsy and send it on to Texas so we can hopefully find out things about her tumor and what mike work on it..

He wants to scan first to make sure we have enough active disease to biopsy.....makes sense.. i guess i'm just impatient to do this because I think the potential is huge..

Soooooo... we have decided to scan first but not put off chemo.. go ahead and do the chemo and then just try and biopsy after she recovers from chemo this next time...

A little longer than my impatient mind had wanted.. but probably is a smart thing to do... I am just absolutely not comfortable putting off chemo so this is the only other solution there is....

anyway...... she is great.. Baillie is great.. we are all great!!!!!!

Thanks to all who check on us....

And thank you Janet for always telling me that I am doing the right things for her.. It is really nice to have somebody looking on the outside who gets what I am trying so hard to do for her..

Especially all that you have been through in your life... to still be so positive.. still bring so much to sooo many lives.... .you inspire me!!! Love you!!!

rhonda

Tuesday, February 26, 2008 0:00 AM CST

Things seem to change rapidly in the Dudley household sometimes.... atleast we are never bored!!!! ha

We may just be heading up to Vermont next week... We are actually due to start chemo on wednesday. We have since learned of a Dr. in Texas who is taking Neuroblastoma tumor samples and testing them to hopefully see what kinds of treatments will best work on that particular tumor... It is all very exciting to us!!

We can actually do the biopsy here but we have also decided to add a new drug to the mix velcade.. I suspect that we can also do that drug here also....but...... it just seems easier to just go to Vermont and do the whole week of topo/cytox/zometa/velcade and do the biopsy too while we are there.. It will be a productive week to be sure!!!

We will also be able to use the tumor sample to do the biology study in Vermont.. We couldn't do it before because she didn't have bone marrow disease and we didn't have any other reason to biopsy... now we can do one biopsy and do 2 different studies with it...

I'm not 100% positive where we will end up doing all this.. We are going to hopefully figure all of that out in the next couple of days.. I think they are working on getting our insurance to pay for the velcade right now and will hopefully hear something tomorrow!!!

This is all just sooo exciting!!!!!! I really hope that we learn great things about Sydneys tumor and Neuroblastoma in general...

Just makes me even more thankful for all the people who are working soo hard to find that ever sought after cure for this blasted disease!!!!! I just wish I had tons and tons and tons of money so I could donate every single cent of it to magicwater and the sam and penolope fund....

Things are going to be pretty busy here soon... but, I am happy.. happy to do more.... hopefully........finally............see this thing..........be nothing...........but a distant memory................

Thank you God............................for today.............

for every day...........................

and.......................for the posibilities..............

love

rhonda

Friday, February 22, 2008 3:42 PM CST

Hey everybody,

Thought i'd do a quick update before I finish supper and then get ready..WE are going to Dance Marathon tonight and the girls are super excited!!!

Sydney is sooo excited about getting a chance to throw a pie at one of the drs!!! I wonder if she'll really do it because she wouldnt before..she just couldn't be mean enough to do it!!!

We just finished her 8th maybe?? round of chemo with nifurtimox.... who knows really..lol i'll have to look it up to make sure......she is doing great though!!! I think she still has something going on in her skull because I can still see it, but it really does look alot smaller!! WE are due to start another round wednesday because we got a delay last time of 2 days to give her counts a chance to come up higher.. If her counts are up enogh wednesday, then we are just going to wait until the following monday to start chemo to give her that extra time to recover..

I really hate not doing things on schedule because I really don't want to give this stupid disease even the slightest chance to spread.. but..... we do have to let her rest sometimes.....

I had read on some other kids sites about a study in Texas which will require us to get another biopsy of her skull.. I emailed Dr. Sholler to ask her about it and she said that she was just getting ready to ask me if I would be interested in doing it!! Ummmmmmmm yeah!!!! lol

I need to have it explained to me a little more, but I think its supposed to tell us more about her particular disease and test in the lab what treatments might work on it....?????????????? I'll post more when im more sure about it.. but.... I am super excited at the thought of it and the potential to tell us more about her disease!!!!!

Anyway.... I used to get told soo many times to guard my heart.... don't get on the internet and read all these stories about all these other kids.... dont do that to yourself.. i never listened.... I need to know.. I need be in contact with other people who face the same kinds of things that I do on a daily basis...I need to see the sweet faces of all these beautiful kids who are fighting just like my Sydney is fighting..

Yeah, I may cry when I read these stories.. yeah it breaks my heart..yeah it hurts me horribly.... but..... it also helps me.... it helps to keep me grounded.. seeing how all these other families deal with this tragedy and rise above it... that helps me.....

here are just a few of them that inspire me beyond belief!!! there are soooooo many more and I just don't have time to list them all right this second...... these are just some that I feel a special bond with right now...

www.caringbridge.org/visit/katiekrize

www.caringbridge.org/ga/dustincobb

www.magicwater.org

these kids are all relapse and have been fighting longer than Sydney has.... They inspire me to keep fighting also....

love you guys!!!!!!!!

off we go!!!

love

rhonda

Saturday, February 16, 2008 10:23 PM CST

Hi all, seems that I slack on the updating thing...

We are all doing good.. We had a good valentines day.. The girls got the electronic banking monopoly and the spongebob operation game and we have had fun playing those..

Mike and I will be married 14 years on Monday.. I am quite shocked actually!!!!!! ha hahahaha It is amazing sometimes how we have managed to stay together after all our marriage has endured... I remember after Abby died and this social worker kept following me around wanting me to talk about my feelings and I kept running from her.. Not wanting to talk about it right then.. Just wanting to hide and grieve without soo many people looking at me.. Anyway, she did catch me long enough to say that a huge percentage of people who have lost a child will end up divorced but that she thought that Mike and I would be the exception to the rule.. That was 10 years and alot more heartache later...I guess she knew a little about what she was talking about....not that things are easy..... they arent..... but somehow..............we work it out..........

Next month will be a year since Sydney relapsed.. A whole year.... And to tell the truth, I am still scared out of my mind..... but.......... I still cling to this idea of a family that I have wanted so desperately my whole life.... a family that I am desperately trying to hold on to... to keep whole..... I will fight for that family until the breath is knocked so hard out of me that I can't possibly fight anymore.. It is my right..... And sometimes I am a little pissed off to tell the truth about it.. Pissed off that my right to my whole family is hanging so thinly by a thread..

I just have to keep remembering that God gives us that right to our families.. He gives us the ability to fight for them.... I couldn't do this without that knowledge....

I have to keep trusting him.. keep trusting what we are doing... What Dr. Sholler is doing.. what the great people with Magicwater are doing... and most of all........keep hoping..

It's hard sometimes not to get down.. to always find the good in everything.. sometimes you just have to get mad... get sad.... get it all out and get over it.... I was just soo sad the other day.... out shopping.... seeing all these cute little girls.. buying their valentines..... and my poor sweet sydney sitting at home..... can't go to school.... can't have hair... can't ever just be a normal kid..i cried..... she is just soo good natured...she made valentines for her classmates and mike took them to her teacher and Baillie brought her valentines that her classmates had made for her.. she was sooo excited.. carrying them around in her little pink bucket and counting them.. never once crying around or sad because she couldnt go to school or be a normal kid.... then it hit me..... if she can do this... so can i...... she loves this life.... loves her life..... not a perfect, Norman
Rockwell kind of life.... but her life... our life.......

And isn't that what it's all about really??? Not wanting the life someone else has..... not hating the life you have.... .but embracing the life that you do have......flawed as it may be???????

To my girls and Mike.... I love you all with all I have in my heart to love...........

flawed as we may be......................

r

Sunday, January 27, 2008 1:03 PM CST

This is for you ANNA!!!!! Ha hahaha I guess I do need to update more often!!!!! lol

We are all doing great!!! I just broke my toilet and Mike is out getting a new tank for it!!! He is soo happy!!! lol I took the lid off the tank to put a blue tablet in it cause i just love blue water and waking up in the middle of the night and Sydney has gone to pee and not flused and the water is green.. cause........ yellow and blue make..............green!!!!!! lol well...........anywho.. when i took the heavy lid off the back of it I dropped it in the tank and it cracked!!!! the whole thing!!!!!!! and water went everywhere!!!! It was soooo lovely!!!!!

Otherwise, we are all good.. Sydneys head is looking better every day!!!!!! Hopefully that radiation did the trick in getting this thing to back off some since it was being so stubborn!!!! It looks almost smooth and its been a while since we have seen that!!! I just hate that bumpy head and knowing what is there..... ahhhhhhhhh....

On a really really good not.. The phase II Nifurtimox trial just opened and I am just tickled pink over it!!!! I could never say enough about what great things those wonderful people in Vermont and all Those parents who are helping so much are doing for our kids!!!!!

I will be forever grateful for all the hard work these people are putting into saving our kids.. These dads who are fighting for the lives of not just their own children.. but ours too.....

No matter what negative things people might say about what we are doing.. no matter how many people are skeptical of what Dr. Sholler is doing... No matter.... I believe.... and that is all that matters to me.... You have to trust your heart.....

Thats all I have... when this is all said and done.. I have to come out of this knowing I did all I could.. Knowing I did the best things I could for her at that time.... Whether this is the absolute right thing?? I dont know... I can hope.... I just know that my heart is with all those people who are fighting just as hard as I am...

And to me..... that is everything..........

Ok... Miss prissy pants Anna!!!

I have updated!!!! lol now I must go help fix our toilet!!!!!!

ps.. we will do 2 more rounds of chemo and then scan again!!! Hoping for some big changes!!!!!!!!!

go visit www.magicwater.org....... they will surely inspire you as they do me......................

to never................ever..............for one second...............give up!!!!!!!!!!!!!!

love

rhonda

Monday, December 24, 2007 6:49 PM CST

Well, I guess it's about time I wrote something.. Today seemed a good day to do that.. Today, the day before Christmas.. The day before our Christ was born..

I really don't even think I can put into words how very grateful and blessed I feel today... How I woke up this morning feeling like I am the luckiest person in the world..

And in some ways, I truly am... Why you might ask?? Well, I get the chance to see things... See things that some people don't take the time to see...I live in this life of the unkown.. My whole world could come crumbling down at any time and I don't ever... won't ever forget that..

And really, that is true about us all... tragedy could befall us all at any given second... but we don't always see that.. We think we are invincible..

I am surely not a perfect mother.. nor a perfect wife, daughter, sister or friend...but, I sure do love this life... I love every single second of it... I love every single second I get to look into the eyes of my sweet girls and see their smiles..

I will never spend a day being miserable.. I will never say why me?? Well, why not me??? Bad things happen to people all the time.. I'm no more special than anybody else.. I am just that much more determined to life this life and help my children live their lives happy...

Cancer stinks.. that is for sure.. nothing about this is easy or fun... having to give my sweet girl shots and her begging me not to.. having to force her to swallow pill after pill, hoping that one or a combination of them all will somehow rid her body of this horrilbe disease.. having chemo poured into her poor little body.. Not one bit of that is fun or reason to be happy... but.. it is what it is... I can't change what is happening to her.. to us.... I can only make the most of what is handed to us..

I WILL NOT LET THIS CANCER RID US OF THE RIGHT WE HAVE TO BE A HAPPY FAMILY!!!

It might take alot of things from us....our freedom... finances... Sydneys ability to one day have children.. soo many other things it robs us of...

But... IT CAN NOT.... WILL NOT....EVER..... BREAK OUR SPIRIT!!!!!!!!!!!!!

That is how I am feeling today on this wonderful, beautiful, Christmas Eve....

Blessed..... More determined..... To fully...... truly...... enjoy... this beautiful life!!!!!!

love

rhonda

Wednesday, December 5, 2007 8:19 AM CST

We are off to Vermont!!! Our flight leaves knoxville at 1:36 this afternoon! We will be home late friday night...

This is our end of study checkup with Dr. Sholler.. We are going to continue with this drug even though we are off study!!

Scans were some better.. No new disease!!! Good news!!!

I am super excited to see some snow but just know im gonna freeze my butt off!!!! lol

Sydney is sooo excited about the snow!!!! I packed lots of hats and gloves so we can get some serious play time in the short time we are there!!!

Thanks to all who keep us in your thoughts and prayers...

WE really are doing ok..... almost 9 months since she relapsed and she is really really stable... That is huge to me!!!

I'm gonna miss Baillie and Mike while we are gone but am sure they will enjoy a little bit of quiet time!!! ha ha

love

rhonda

Sunday, November 25, 2007 5:21 PM CST

Well, scan week is fast upon us and to say i'm scared is a huge understatement!!!!

Scan week is the pits!!!!!!!!!!

I kinda feel that they will be some better but who knows really until we scan... Her head does look better though...

We have had to stop the nifurtimox again because of all the side effects she is having..... she is just really off balance and kinda slurring her speech and is just kinda off...

Hopefully we can start it back by tuesday when we do chemo as that is when she really needs it....

We will hopefully start chemo tuesday if her counts are good enough and then we scan tue, wed and thursday....

Tomorrow is her birthday also.... My sweet girl is turning 7!!! Just can't believe it... how very lucky we truly are.... to have this baby with us for another birthday... another thanksgiving, another christmas!!!!

almost 8 months into this mean relapse and it seems that she is pretty stable....

That is good really, even though I still want more..... hope for more......

Even though i hope......... that these scans are better..... I really feel that they will be better..........I am still worried sick.............. just this sick feeling in the pit of my stomach.....

I just want to see that all these things we are doing to her are somehow helping.....

Baillie will be gone tomorrow through wed on a class camping trip and Mike is going with her as a chaperone... I hate that they won't be here for her birthday but it can't be helped.. We did already have her a party in Ky while visiting Mikes family and that was nice... She had a great time....

I am also going to bring some cupcakes to clinic tomorrow since she will have to be there on her birthday..... Just like you do when your kid has a birthday and they are in school.. you bring cupcakes..... except Sydney can't go to school so I am bringing them to clinic!!! her home away from home!!!!!

Anyway, keep us in your prayers next week as we will be really busy and really worried!!!!!

We also go to Vermont on the 6th for end of study stuff... I already told them I expect to see some snow or im not coming!!!!! haha

love to all

rhonda

Tuesday, October 30, 2007 7:48 PM CDT

Hi one and all!!! Things are going pretty good in the ole Dudley household....

I tell ya, I did have a rough couple of days with my heart...

I so just don't want to let this destroy me... I want to not just survive this but to come out of it whole...Sometimes it's just easier said than done..

I want to believe.. I want to think that somehow she can survive this.. I really really want to... it's just that sometimes the reality of the situation we are in just hits me so hard it's like a punch in the stomach!!!

I see this little girl and how very hard she has fought her entire life and it just breaks my heart.. I feel like i'm to blame.. I Had to have another child.. Did I bring her into the world just to suffer?? Oh, what that does to my heart...my soul..... But how could I not have this sweet little girl in my life?? I couldn't imagine my life if I would have never had her..

And you know, even with all the things she has been through, she is one of the happiest people I have ever seen!!! It just amazes me... How sick she can be and still smile!! How she can throw up one second and then be running around playing the next.. she never gets down.. she never asks why me... she gets poked and prodded and she might cry a little and then just stops in an instant and is laughing and playing....

I wish I had the ability of a child to do that all the time.. I try really hard, I do.... And most days we are great.. but there are times when my heart aches and I just can't stop it.. no matter how much I try... when i look at her... when i see her running around the house trying to clean and dust.. she loves to clean!!!! and loves to listen to music while she cleans!! and that just breaks my heart.. I tell her to quit, she doesn't have to do those things thats my job.. and she won't.. she just loves it soo much!!! and sings while shes doing it.... I just watch her..... my heart breaking...for this sweet girl who loves nothing more than listening to Hannah Montanna and dusting!!!

Anyway, we really are ok.... just the burden of this battle is hard sometimes... looking into the eyes of your child and not knowing if you will see her grow up.. If Baillie will lose another sister.. How is all of this going to impact her??

Keep us in your prayers the next month or so.. we are due to start chemo on the 6th and then will scan again and then go back to the great state of Vermont... That will be our last visit... That will be kind of sad for me because we have met soooo many unbelievable people in Vermont.... I hope to see some improvement on these next sccans!!! The study will be over but we can continue here at home if we want to... we will see.. if its keeping her stable then I want to continue.. I really believe in what they are doing and Nifurtimox!!!!

Please pray for sweet little Audrey Knepp who also has Neuroblastoma and is just the funniest sweetest little darling ever!!! They got some news that wasn't what they wanted to hear and they have some decisions to make in the near future...

And our precious little friend Emily Barger!!! she just turned 7 and is soooooo cute with her little pink coyboy boots!!!!!!

love to you all!!!

rhonda

Thursday, October 11, 2007 1:43 PM CDT

Hi all, things are going pretty good here... WE haven't been able to start chemo because her counts are still too low.. We were supposed to start monday and then we went again today to check and they have come up.. but the anc is still not high enough. kinda bummed about that because I really want some chemo in her.. but... atleast we have the nifurtimox..

She had another seizure a couple of weeks ago and we had to put her on a seizure medicine. She has been fine since.. Thank God!!!!

All in all we are doing ok... sooooo glad it's fall!!!! just makes me sooo happy!!!!!!!!!

Sooo glad for Magicwater and Dr. Sholler and this nifurtimox study and all the other studies they are working on!!!!

Please go to www.Magicwater.org and see what these guys are up to.. And meet the wonderful families who are fighting so hard for their kids and ours!!!

love

rhonda

Sunday, September 23, 2007 10:38 AM CDT

HOME AT LAST!! HOME AT LAST!!

Where to start...hmmmmmm well...............the week started off great... went to clinic, had first day of chemo with the nifurtimox with no problems...then came tuesday, which also went great....until................we went to see our friend Dustin who is from Georgia and also on the Nifurtimox study.... They were inpatient...

While visiting, I noticed Sydney looking funny... turning her head really far to the side and leaning like she was looking at something really intensly.. I asked her what she was looking at and she didn't answer me.... she was leaning against the bed and standing right beside me.. I grabbed her arm and asked her what she was looking at.. she still didn't answer and like pulled away from me and stumbled... MY heart just sank.. I knew then something wasn't right with my little girl....

I picked her up and her head was still turned to the side and eyes wide open and non responsive.. arms stiff at sides... i about lost it.. let me tell ya... I really thought she might not be breathing... I just didn't know.. it was soooo scary.....

I had been given this medicine you have to administer rectally if she were to have a seizure and I just started screaming for Dustins mom to go get someone and then I threw my purse on the ground and started throwing everything out looking for that medicine...I had put her on the bed and I just used the medicine... I had never seen a person have a seizure before.. especially not my sweet girl.. but I figured something bad was going on and this couldn't hurt....

Next thing I know, there are massive amounts of people crowding in the room and take off running with her... I am still freaking out.... thinking she isn't breathing.... still not really knowing what was going on with her.. let me just tell ya, when you pull the code button....ummmmm people move fast!!!!! and alot of them!!!!!! dang, i haven't seen that many people move that fast!!!!

They gave her some oxygen and then she threw up and started coming around...She has no idea what happened to her... I'm glad... It's bad enough that I have this image imbedded in my head... ooooh..... that was sooo awful!!!!

She ended up being fine.. they admitted us to watch her and she was bouncing off the walls and shaking her booty in no time!!!!

Some kids on this medicine have had seizures and thats why I was carrying around that medicine... She hasn't had one since and she is really fine.....

I think her body just had to adjust to getting chemo with that nifurtimox and now it's like, ok i recognize this now and is adjusting to it.. I think that most of the kids who did have seizures did so on that first round of chemo....

I still feel great about this drug and about what wonderful Dr. Sholler is doing in that great state of Vermont!!!!

We ended up staying in the hospital for 3 nights because she spiked a temp when they were going to release us wednesday... She was fine though.. no infections in her port!!!!!

I am ever sooooooo glad to be home.. but i tell ya, there are some really great people in Vermont!!!! It's hard when you have to be so far away from home..... and in a strange hospital with people you don't know.... but, they are great!!!! made us feel like we'd been going there forever!!! It made a hard situation really great!!! I was kinda sad to leave... just soo many great people...

I had people bringing us things.. like one student nurse who is soooo great!! Amy, brought us homemade salsa and chips one day.. and then another day she brought me a 2 liter of diet coke and syd a balloon!!! that was awesome!!!! People at the Ronald Mcdonald house leaving stuff at our door for sydney all the time.. things they know she likes.. cheerios.... just too many nice things to even list them all....just a good feeling to meet so many people who are so kind....

Being around Dr. Sholler.... just really don't have the words to express how very wonderful she is!!!! You are just instantly comfortable with her.. You just know, after just a few minutes that she really loves these kids.. She has this passion in fixing them.. I can't ever say enough what that means to us...

I think coming to Vermont was the best decision ever.. Not that I think this particular drug is a magic cure.. but............ I think it is doing a pretty darn good job in keeping these kids stable for long periods of time and that is unbelievable!!!!!

To find a place and a group of people who are fighting just as hard as you are for your child is unreal!!!!

Dr. Sholler called us from her home yesterday while we were in the airport just to check on Sydney... See what I mean?? She doesn't just see a kid and then forgets about them.... She cares.... that is huge to me.... I want someone like that on my side....

Like I said before.... I'm glad to be home.... but Vermont and the people in it have surely captured a piece of my heart!!!!!

love

rhonda

Saturday, September 15, 2007 11:53 AM CDT

Hi HO, Hi HO, It's off to Vermont we goooooo!!!! Hi Ho, Hi Ho, Hi Hoooooooo!!!!!

WElllllllll..................... the ct scan showed some improvement, but................the Mibg scan looks more intense....just in those same spots on skull and pelvis though.........

hmmmmmmmmm.......................

Still not the worst news ever.... still full charge ahead............

I'm ever so glad that we have gotten through those weeks that worried me so much!!!! Now it's time to kick some serious cancer booty!!!!!!

I am in the process of packing.... (ok, not this very second)!!! ha

We leave for Nashville with the chickens tomorrow and will then fly to DC and then land in Burlington sometime in the afternoon....

We start chemo on Monday morning thru friday and then come home on Saturday afternoon.....

I am soooooo ready to get this over with and not have to travel for a while!!!!

Sydney and I are going by ourselves this time as Mike really needs to stay home and work and take care of miss redhead...

It's ok though..Everyone in Vermont has been soo nice to us and we just felt right at home everywhere we went!!!! I am not the least bit worried!!!!!

Well, I really must pack so i'm not up all night tonight!!!! ha ha!!!! not that I ever stay up late!!!!!!

That one was for you Janet!!!! ha ha Love you!!!!!

Keep praying for my sweet gal!!! And all those other darling little souls who are fighting ever so hard!!!!

with love

rhonda

Tuesday, September 11, 2007 8:00 PM CDT

I just wanted to share this paper that Baillie wrote for school about her Hero....

Just made me cry....

What sweet, darling little girls I have!!!!!

My Hero

My sister, Sydney, who is only six and has beaten cancer once, has to do it again. This is exactly why she's my hero.

She has to go places like Vermont, Nashville, and Childrens Hospital to get shots and meds, but, she barely ever cries.

I think Sydney is another name for a cute, bald, brave kid. She's the bravest person i've ever met in my ten year old life and that's a long time. Another reason Sydney is brave is because she's not afraid to let people see her bald head. She doesn't care if people laugh at her. That's why I love my little sissy.

You would think a cancer kid would lay in bed and be lazy all day. Well, if you think that you don't know my sissy. She runs, plays, jumps, and screams all day.

Well that's all about my sissy. Remember my so true motto: Bald People Rock!!

Does this not just break your heart???

I hate that my girls have to go through this together, but am so grateful for the love that they have for one another...

love

rhonda

Monday, September 10, 2007 11:35 PM CDT

Hi all,

Things are going pretty good in the Dudley household.. Sydney is having absolutely no side effects from the Nifurtimox which I am ever so grateful for...

She is still eating great and isn't sick at all... wow... there goes my girl again!!!

Miss Baillie is doing good too... trying to adjust to 5th grade and get back in the swing of doing homework and all that, but I think she will do fine...

Scan week is upon us and I don't even think I have to say how worried I am.... Scan week is not fun to say the least..

We are scanning now as part of the study to see if they Nifurtimox alone does anything for the disease....

I am kinda worried right now because I am seeing more bumps on her head...

I have talked to Dr. Sholler in Vermont and she says that while she cannot say for sure it's not progression, they are seeing in the lab, that while the tumor is dying it swells.....

I surely hope this is the case for my sweet girl....

No matter what these scans show, we will march on... The Nifurtimox is supposed to help the chemo work better, so i'm not ready to give up on it, even if the news is not what we want to hear...

I really really want good news though!!!!!!!!!! atleast stable!!!! especially dying!!!!!

We fly to Vermont again on sunday the 16th and start chemo on Monday-Friday outpatient and then come home Sat...

Please continue to keep us in your prayers this week and the weeks and surely months to come.... that we rid this sweet girl of mine of this monster... and that we somehow.......... someway............. against these terrible odds.............keep this beast away for good!!!!

And remember Mike who keeps on working and keeps on providing for this family on top of all the stress and worry that he surely must have for his littlest daughter...

And sweet sweet Baillie, who is so often overlooked in this horrible battle that her family has been thrown into....

With all my love

rhonda

Tuesday, August 28, 2007 1:55 PM CDT

I am soooooo happy right now I can hardly sit still to type this!!!!!!!!

Sweet sweet, wonderful, kind Dr. Malik called while were looking out at beautiful lake champlain and said that her bone marrow is completely clean!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am beside myself!!!!!!!!!!! This is more than I could have ever expected and I thank God for giving us some news that we have sooo prayed for!!!!!!!

It was 65% to 70% impacted!!!!!!! this is just unbelievable!!!!!!!!!!!!!!

I am blessed beyond words right now and i think im going to go hug the skin right off my sweet sweet girl!!!!!!!

Thanks soooo much to all who think of us!!!! And pray for us!!!!!!!

love

rhonda

Monday, August 27, 2007 7:28 PM CDT

Hellooooooooooo From Vermont!!!!!!!!!!!

First day went great!!!! Everyone here is sooooooo nice!!!! Dr. Sholler is great!!! The nurses are fantastic!!!!! The hospital is great!! The ronald mcdonald house is great!!!! Did I say everything is great??? ha ha

The only thing is.......... and there are some of you who will really love this........ not a soul can understand a thing I say when I talk!!!!!! ha ha ha ha

They just go "huh"?/?????? lol i'm getting alot of blank stares!!!! ha ha ha And....... all we hear is "where are you from"? I can't say hello without someone asking me where i'm from!!!!! ha ha

Imagine how that is working out!! with how fast I talk.. and....how very much I talk!!!! and noboby understanding!!!!! he he

You'd think I was speaking a foreign language!!!!!

Besides all that....lol everything is great!!!!Syd bounced off the walls as usual.. and taking the pills and all that went perfectly.....

We are free tom and wed so we are going to explore..... there is this place called echo that we are going to take syd to.. I think it's an aquarium... mom wants to go on a ferry ride to new york... we will see.... we are on lake champlain and everything is just sooooo beautiful!!! we are excited to have a couple of days to wonder around this great place of vermont!!!!!!!

I haven't heard yet how the bone marrow went.. I will post when I can...

love to you all

and thanks sooo much for thinking and praying for us!!

rhonda

Sunday, August 26, 2007 2:29 AM CDT

Well, it's 3:30am and we are leaving at 6 to drive to Nashville.. Our flight leaves at 10:15..

Yessssssssss I am still up!!! ha ha haha

The people who know me well are surely not surprised by this!!!! ha ha

I am nervous and excited... Nervous about this mean ole disease and trying something that may or may not work....

excited by all the possibilities!!!!

It goes back to hope.. Hope is what drives us.. keeps our heads held high even when we don't really feel like it...

And right now, I am full of hope....

where there is life......there is surely hope!!!!

And this sweet girl of mine is living it up.. one booty shake at a time!!!!

Thank you all so much for all your thoughts and prayers....

ps.... oh, I already miss Baillie and Mike soo much!!!

yeah, these are pretty random thoughts.... but its 3:30 am!!! what do you expect??? ha ha haha

love

rhonda

Thursday, August 23, 2007 2:27 PM CDT

Good Good news in the Dudley household today!!!!!

There is improvement on the MIBG Scan!!! The skull has shrunk and so has spot on pelvis!!!!

This is really good news considering we have only done 2 rounds of chemo!!!!

We do a bone marrow aspirate and biopsy tomorrow and that is a little scary as the bone marrow is much harder to clear.. but..... i'm feeling ok about it... as long as we don't have more disease at this point, then I feel good about it...

We are set to go to Vermont and I tell ya, I am just excited about the things that they are doing there.. I think this is where Neuroblastoma treatment needs to be heading.. People who are passionate about finding better, less toxic, more effective treatments..

And I just can't thank enough all the families who have paved the way before us..

I know we have a tough battle ahead of us, and honestly, the odds aren't good.... but.......... hope is a wonderful thing.... and today..... I am very very hopeful!!!

I thank God today for giving me this sweet little family of mine.. I just feel sooo blessed right now..

I'm soo glad that we are heading to Vermont with some good news..

I'm gonna go kiss my girls...

Life sure is Grand!!!

love love love

rhonda

Sunday, August 19, 2007 5:38 PM CDT

Hi all,

Got the Ct scan results.. It appears that there is no change in the skull.. That was a little confusing as those big bumps went away right before our eyes..

We still have the Mibg scans to do and bone marrow and those will tell us more what is going on..

There were several spots on her pelvis when she progressed and only one showed up on the ct scan.. The Mibg could still pick up something.. but for now.. this is all good news..

Nothing new.. No progression.. That was what I have been praying for... After just 2 rounds of chemo, you wouldn't expect a huge change.. I just didn't want to see anything new..

We wouldn't even be scanning right now if it weren't for Vermont needing scans for this study..soooooo.... I am very pleased....

We will know more after we scan this coming week... but, i don't think we will see any big progression and for that I am very very thankful.....

God does give us what we ask for.. just sometimes in small doses...

I thank God for every second, every day with these sweet girls of mine.. And really, today was a miracle.. a prayer answered.. just another day... to enjoy this life that I have been soo blessed with.. Not a perfect life for sure..... but a beautiful life nonetheless.. A life with my family...

We go to Vermont Sunday evening on the 26th and Go to clinic at 7:30am Monday morning.. she will get the Nifurtimox pills and get her blood checked for 8 hours.. Tue and Wed we have free.. No clinic, nothing.. then on thurs we go to clinic and do the same thing as monday.. Then we go home with the Nifurtimox to take for 3 weeks everyday.. several a day.. Then we go back to Vermont and do outpatient chemo mon-fri and then go home sat... And then we only have to go one more time for a check up like 2 months later..

All the rest of the time we do it all here in Knoxville.. This is really good.. Not too bad all things considering.. I am praying really hard that this drug helps this chemo to work better and holds this beast off for as long as possible... And then we can come up with another plan to keep this sweet girl with us for a long long time..

Sydney will be the 12th child to do this Nifurtimox/topotecan/cytoxin study.. and only the 4th girl... I told them they wouldn't hardly know what to do with a prissy little girly girly since they've had so many boys!!!! Wait till they see miss priss herself doing her booty shake and dances!!!! ha ha carrying her purses and batting those pretty eyes at everyone she meets!! They will be smitten!!! ha ha

I am soo glad that my mom is going to go with me... Mike really needs to stay here and work and take care of Baillie and even though I was more than willing and prepared to go by myself, it sure is nice to have someone there with me that first trip...

I will post more when I learn the results of those scans....

thanks for all your thoughts and prayers

rhonda

Wednesday, August 15, 2007 5:23 PM CDT

If you go down a little bit from the picture at the top of the page you will see a box where you can hit play..

It's a video of the girls singing "hit the road cancer"!!!!!

You will have to scroll down to the zeocast video and stop the music or you won't be able to hear it good..just roll your mouse over where it says music and it will say turn music off.. that way you can hear the song...

we are good... trying not to stress myself out too much over these scans coming up.. easier said than done.... i've just got to quit following her around the house feeling her head or she's just gonna haul off and smack me good!!!! ha

i'll update more when I know more

love

rhonda

Monday, August 13, 2007 9:44 PM CDT

Well, it's been a little while so I thought i'd update..

Syd is doing really good.. We finished this second round of chemo friday and you would never know she had gotten anything at all!! She is bouncing off the walls!!

Baillie just started 5th grade last thursday!! I tell ya, I can't believe my baby is going to be in middle school next year!!! I am soo proud of her!!

We do a ct scan on friday the 17th of the chest, pelvis, abdomen and skull.. a bone scan on the 20th and Mibg scans on the 21st, 22nd, and 23rd.. And somewhere in between all of those we will do a bone marrow aspirate and biopsy.. All in preperation to go to Vermont for the Nifurtimox/topotecan/cytoxin study...

I have went round and round in my head about doing this study but when it was all said and done I just had to remember to listen to what my gut was telling me.. And I have had a good feeling about this study since I first heard about it..

Only 11 kids so far have done it ( I think).. And we are taking a leap here... but...... in this world, everything is a leap.... And I will do anything I can for her..

We only have to go to Vermont for the first 2 rounds... I think 4 or 5 days the first time and wait 3 weeks and go back and then we stay 5 days the second time.. and then only have to go back 1 or 2 months later for a checkup.. All the rest we do here in Knoxville..

Keep us in your prayers this week and next as we do all these scans that soo devestated my world the last time.. I sometimes just wonder how much my poor beaten heart can take.. but..... we will march on.. no matter what...

And please remember all the other kids who are fighting so bravely right now...

If it weren't for those brave kids and their parents who have paved the way for us, we wouldn't even have this study to go to right now.. And to the great dr. who believed in them and is passionate about saving our kids.. Thank you...

www.teamsam.com whos parents are part of the team working with Dr. Sholler to try and get more treatments that are less toxic and more effective out there for our kids..

www.magicwater.org another pioneer family on nifurtimox study who is working to not only help their child, but all of our children!!

These 2 families in particular have answered all my questions and really helped me to understand this study and just been a great source of information and kindness.. it's people like this, who will end up helping to find a cure for all of our kids!!!

Pray for us all.. This battle is hard... This unknown against a monster that is relentless....

with all my love

r

Tuesday, July 31, 2007 0:03 AM CDT

A dear friend sent me this and it just hit home.. as hard as my life seems and as uncertain as this life is at times I do know that cancer will not break me..

What cancer cannot do- It cannot invade the soul, suppress memories, kill friendship,destroy peace, conquer the spirit, shatter hope, cripple love, corrode faith, steal eternal life, or silence courage...

Keep fighting all you little warriors!! And we will keep fighting right beside you!!!

r

Friday, July 20, 2007 7:18 PM CDT

Well, just finished day 4 of 5 of topotecan/cytoxan and she has just breezed through it like always.... Acts like nothing has even happened to her..

Now, I know her counts will soon bottom out and things might start to be different, but for now, im ever so happy that she is feeling soo good.. And eating!!!! Wow!! What a trooper my little girl is!!!!

We go in tomorrow for the 5th day and then she will have 2 weeks off.. We are still trying to decide whether to do another round of the chemo here and then go to vermont and try that study using the same 2 chemos that she is on now but adding another drug to it in the hopes that it will be more effective in backing this thing off... or, just go straight there.. that kinda scares me though... i would feel much better in seeing this disease lessen some before we do that because that study calls for her just being on the nifurtimox for the first 21 days and then doing the chemo and that worries me some..

We'll see... I suspect that we might do atleast another round of chemo here and then make our way to vermont after that...

Right now, we are all doing good... Baillie is good as always and we are basically just trying to readjust to this life that we have once again been thrown into...

It's amazing how quickly you can adjust when you have to.. we sure did enjoy those almost 2 years of a normal life though.. just seems weird that we can't take her out to eat or in stores like we have been able to do for a while now... she just doesn't seem sick, so it's easy to get fooled... just still so unbelievable.... that my sweet girl has cancer again... that this is our life once again.... this sweet little girl who looks healthier than most "normal" kids I know..!!!!

I keep thinking how very hard it is to have hope when it seems that there is soo little of it to hang onto... but then I just remind myself that......

Where there is life........ There is surely hope!!!!

And right now, this sweet little girl of mine is living it up.. acting like she doesn't have a care in the world... sooo.... hope is not lost after all......

love

me

Tuesday, July 17, 2007 4:38 PM CDT

Just got home from our first round of chemo... we will do 5 days a week outpatient for one week and then be off for 2 weeks..

These aren't huge doses at a time but add up to a huge hit so she will get sick and have to have neupogen shots daily again to help boost her counts back up...

She did beautifully her first round and i'm very hopeful that this will back this beast off some so I can feel some better.. Just doing something helps.... alot.... atleast then I can have the hope of it going away..

We are planning to do the trial in Vermont using the same two chemos she just got and adding a drug nitfurtimox to it in the hopes of backing it off and keeping it stable for longer..

We will only have to do the first 2 rounds in vermont and then they will give us the drug and we can do the rest of the rounds here at home...

We don't know if it will work.. we don't know anything will, but we have to try all we can and this is a start.. We realize that we will need to move on to other things in the hopes of ridding her of this beast for good but hopefully this will do the job in getting her disease more stable..

I'm grateful beyond words to the Dads who helped get this trial started. Pushing, working nonstop to try and save these kids.. their kids... our kids.... just amazing..
This is a smaller study, and from what i've heard an amazing dr. and a few dads who worked tirelessly to get this trial up in record time..

I hope it works...

Thanks so much to all who think of us

rhonda

Friday, July 13, 2007 10:54 AM CDT

I've prayed all night for God to help this child...To tell me somehow that she is going to survive this... somehow.. against these terrible odds..

I didn't get this big voice booming down telling me that everything is going to be ok.. what I got is this sweet sweet little girl with the heart of a lion telling me in her own way that she is ok..

I was talking to her this morning telling her, trying to prepare her for what is ahead.. telling her that she will have to get chemo and she will probably lose her hair again...

And this sweet little child of mine just looked at me and giggled and said "put a bag over my head"!!! Oh, what a silly little girl!! Oh what a blessing in my life..

I feel like someone has taken out my heart and beat it to death and then put it back into my chest.. there is a constant ache there.. a lump in my throat that won't go away.. this sick feeling in the pit of my stomach.. I'm afraid sometimes that my heart's just been broken too many times.. and it takes every ounce of strength in me just to hold my head up..

But through that all, I see something.. some little glimmer of hope...looking at her sweet little smile.. her funny little dances.. the way she at the worst times, times when i feel like im gonna die, she smiles and sings and dances and shows us all how to live life to the fullest..

And that's exactly what I must do..as much as i just want to crawl in the bed and put my head under the covers and pretend that this nightmare isn't happening.. I will get through this... somehow.. some way.... With God by my side... showing me, through sydney how to truly live......

ps.. someone just signed our guestbook and said that she believes in a God much bigger than Neuroblastoma... Wow.. I love that... sometimes it's those simple words that put things in prespective.. All I can think about is how big this monster is and how much control it seems to have.. But I must never forget that God is bigger than even that...Thank you for those words...

r

Wednesday, July 11, 2007 6:28 PM CDT

Just found out today that Sydney has disease progression.. Bone marrow.. two spots on skull and pelvis... im sick... just soo sooo sick.....

theres not many positive things i can come up with right now.... just too sad.. looking at this sweet sweet soul and not knowing what her future holds..

just soo sad....

pray for us.... pray for her... pray that we can somehow get through this cause right now im just feeling so lost...

r

Wednesday, July 4, 2007 9:17 PM CDT

Hi all and Happy Fourth of July!!! Hope everyone had a good day...

Today was also my 34th birthday. I had a really good day..Even if turning 34 isn't my idea of super fun!!! ha

Just wanted to thank Michele for all she did to make my day special today!!! First off, she gave me a gift card to the Olive Garden and then took Baillie and Sydney for the night so Mike and I could go out to dinner and spend some time alone....

Then they showed up on my door this morning with 2 bunches of flowers, a huge balloon that sings happy birthday and a big cookie cake and cards that her daughter and my girls had made for me!!!!!!!!!!!!! That was such a big surprise and sooo nice!!!! She told me I wasn't allowed to cry and get mushy so i'll do this instead!!!! ha ha Thanks again!!!! You're a great friend and neighbor!!!!!

Mike cooked supper for us this evening on the grill.. Steaks, hamburgers and hotdogs!! That was great!!!! Two days in a row of not cooking!!!!!! yeah!!!!!!!!!

Sydney is doing great!!! We go to clinic in the morning for counts and then scan next week.. We will have a bone marrow on monday and mibg scans on tue, wed and thursday.. if these scans are better or stable then we go in the following week on tuesday for round 3 of this antibody..!!!! I am really praying very hard that they are good!!!!!

Baillie is doing good.. has been a little sick acting for a couple of days.. I think a touch of a bug or something.. she's feeling much better now.. She is growing like a weed and is such a big girl!!!

Mikes birthday is on the 11th.. He will also be turning 34.. he jokes that he married an older woman!!! ha ha!!!!! He only gets to do that for one week out of the year!!!!

I'll write more when I find out how these scans are!!!! Keep praying for my sweet girl!!!!!!

with all my love

rhonda

Monday, June 18, 2007 6:58 PM CDT

We are home.... Finally!!!!! We got home saturday.. We ended up having to stay another day because her blood pressure dropped really low and she wanted to watch her..

We got the full three days of this antibody and I am soo pleased with that.. It's a hard treatment as far as side effects go but they don't seem to last long.. Her liver enzymes did really good this time. They did go up the first day some but not anywhere near what they did the first time.. And the second day they actually went down!!!!

She did hold alot of fluid and couldn't pee but they gave her some meds and lots of fluids and that seemed to help.. She is fine with all of that now..

She did have a severe allergic reaction to what we suspect was zofran on saturday right before we were ready to leave.. We were giving her that to help with the nausea before we went home and right in the middle of the infusion her eyes swelled shut and her lips got huge and then she broke out in hives all over..

I ended up in the er with her yesterday just because it had spread so much and the benadryl just wasn't providing her with much relief.. they gave her a different medicine and that is helping some.... She now looks like she has polka dots all over her body!!!! but she is feeling lots and lots better!!!!!

Now I really understand why we have to go to the PICU for this treatment.. that blood pressure thing was scary... and that is one of the big reasons she has to do it up there.. but it all worked out..

All the nurses up there are super nice and took good care of my girl..

We are just recovering from the past couple of weeks and trying to take it easy... I'm just tired out... but i'm pretty sure I feel better than Sydney has so I won't complain...

We go to clinic in the morning to check counts and all that and I think we have scans coming up.. I'm not sure what scans they will be doing exactly as this roadmap is hard to read but I do know that she will atleast have a bone marrow and a vma/hva done.. I do think they will do the mibg and ct scan also....

Thanks so much for keeping up with us and praying for my sweet girl....

with all my love

rhonda

Friday, June 8, 2007 2:32 PM CDT

Hi all, It's been a little while since i've updated.

We are in WV right now because Mikes mom just died.. It was very sudden and she was only 55. We will be here until after the funeral saturday and sunday..

We plan to come home monday sometime and will be admitted in the PICU for the antibody treatment tuesday..

When we went to clinic last week, Dr. Malik told us that we could start the antibody a week early and we jumped at the chance..

They will be doing it at 50% this time and we are hoping that it will help in keeping those liver enzymes down so she can get the full treatment..

Just pray for Mike and the rest of his family as they have had soo many horrible things happen in the past 8 months.. Mikes grandma has lost all 3 of her children in 8 months.. Mikes aunt and uncle (his moms only brother and sister), both died in a car accident together.. And now Leslie, the last one left..

And then to have the worry over Sydney on top of that all.. it's all just too much sometimes.. I worry so much about mike with all of this..

Thanks so much for all your thoughts and prayers

with all my love

rhonda

Wednesday, May 30, 2007 10:07 AM CDT

Hello to all you who keep up with the Dudley clan!! We are hanging in there.. Still seems like this is all some bad dream.. Even though we are back in the fight again, I guess it still just doesn't seem real..

All in all we are doing really good.. it's funny how you pull it together when you really don't have a choice...

Syd is doing fantastic and we are all enjoying our new (ok, not new), but new to us house!!!!

I've thought and thought, and prayed and prayed and talked to Dr. Malik until im blue in the face, and we have decided to try the antibody again.. I'm just not ready to give up on it yet.. Not after one dose.. Not when there are just so few treatments out there for relapse Neuroblastoma.. If we had a ton of options then it would be easier to just go on to something else.. Unfortunately that is not the case.

We go in on the 19th of June for this next round and will do it at 50%. If she tolerates this one we can go up to 75% for the next ones but not go back to 100%..

It scares the daylights out of me to just sit and wait, and not do anything.. putting my faith in this drug that I don't even know will work.. but the truth is we aren't putting our faith in this drug.. We're putting our faith in God, that he will continue to guide us and help see us through this journey we are yet again taking...

We will scan again after this next round.. I just pray that this disease will stay put while we wait and that this antibody will kick it to the curb where it belongs!!!!!

Right now though, sydney is loving life and is feeling fantastic.. The side effects of the antibody (even though we just got one dose) don't seem to last long.. All her counts are back to normal.. And her vma/hva (neuroblastoma tumor marker) just came back normal also... That isn't everything as it's just one tool, but it's good nonetheless as it being elevated would be major disease progression..

Thanks to all who think of us

And just continue to pray for us.. Pray that we can continue to enjoy this precious life that we have been soo blessed to have and not let this disease and what it could do destroy us!!!

with all my love

rhonda

Wednesday, May 23, 2007 7:30 PM CDT

Well, we are home earlier than expected... WE managed to get one dose of the antibody in her yesterday and as they were getting ready to do the second day, her bloodwork came back.. her liver enzymes had shot through the roof.... That is a side effect, but..... they didn't expect it soo soon or to be soo high so fast...

We sat and waited while they contacted the study chair and came back and said that we had to stop this dose... and you can't make it up.. this day is gone.. we are going to clinic in the morning and if the levels have came down enough, we will do the third dose at half strength.. if not, I don't know what we'll do.. I guess back to the drawing board..

We can either wait until 28 days and try it again or stop the study all together and try something else..... yuck!! not the place I wanted to be in so soon... Not the place they expected us to be in soo soon either.. Her liver enzymes were totally normal yesterday...

Other than that, she got through it ok enough.. It wasn't all that fun as she had alot of pain and discomfort and they couldn't premed with pain meds on the first day as they didn't know how she was going to react to it.. but, by the end of the night and enough morphine she was alright....

Just pray that we come up with yet another plan for my sweet girl.. It's so hard to know if we are chosing the right path for her..

But I do have faith that tomorrow is another day and the light of a new day always seems brighter... I do think that maybe things happen for a reason, so maybe things really will work out how they are supposed to...

Thanks for all your thoughts and prayers

with all my love,

rhonda

Thursday, May 17, 2007 11:16 AM CDT

We are back from her bone marrow and she is doing fine as usual.. she got right up smiling and ate some chicken nuggets and fries and then was ready to go!!! They did it super early this morning so we have been home for a while.. that was great..

She got her port accessed for the first time and that went well.. we were a little worried because we only had the numbing cream on for 20 minutes and she just had it put in 2 days ago. but again, she did great.. I think we are really gonna love the port!!!

Unless something changes we are going to start the hu14.18 IL2 antibody on monday or tuesday.. probably tuesday.. she will stay 4 days.. He did say today that they would probably do the first few rounds in the PICU to monitor her closely...I'm ok with that.. just want to get this fighting started...

I think she will only have to go to clinic once a week to do blood work and check on her and then start the whole thing again in 28 days.. and like I said before, as long as she can tolerate it, and her disease doesn't progress, she could possibly do 10 rounds..

I just hope this works...

As a family we are all doing great.. Baillie seems to be doing ok.. I did see posted on the clinic wall today about a support group for kids 6-16 who have a family member or someone they know with cancer.. There is a meeting tonight and I thought about taking Baillie.. She is so quiet about everything.. I think it might be good for her to be around other kids who are going through what she is.. Sometimes the focus is so much on Sydney because she is sick that I just want to make sure she is ok....

Thanks again for all your thoughts and prayers

with all my love

rhonda

Tuesday, May 15, 2007 12:50 AM CDT

Hey everybody!! We are now the proud (ok maybe not proud) owners of a port!!!!!!!! not a brovie!!! yeah!!!!! she did soo good!!! thats my little fighter!!!!

We are now home and she is doing good, just a little sore..

We go back to clinic on thursday with the chickens for bone marrow biopsy and aspirate (yes another one)!!!! He needs it for the antibody study.. he didn't realize until they were taking her into recovery that he needed it or he could have just done it today while she was already asleep.. oh well... won't kill us..

He thinks the antibody will be here by the end of the week and we can get started next week??? hopefully... im just ready to get started fighting this thing...

I'm gonna go and love on my girl.... just wanted to do a quick update....

thanks to all who think of us...

with all my love

rhonda

Tuesday, May 15, 2007 4:36 AM CDT

Well, it's 5am and we go in at 7:00 for her have her port put in.. well, he's pretty sure it's gonna be a port, but says to not be surprised if she came out with a broviac... hmmmmm lol I guess it will just be a surprise!!! lol

I'm also pretty sure we are going to start the hu14.18 IL2 antibody here in knoxville.. He also wants us to go to Cincinnatti on Monday to meet with the dr. there.. just in case we need to do Mibg later down the road, we will have already started the process..

I think maybe we'll start the antibody next week?? hopefully? i'm ready to start fighting this thing.... the waiting is for the birds!!!

The antibody will be a 4 hour infusion over 3 days.. and then she'll have to stay an extra couple of days to monitor her.. he also said that they will be doing it in the PICU.. They haven't done the antibody in this hospital yet and they want her up there to monitor the side effects... this will be done every 28 days for up to 10 rounds.. as long as her disease doesn't progress or the side effects don't get too bad..

This is not a chemo.. what it is supposed to do is affix to neuroblastoma cells and signal the patients immune system to combat the cancer...

pray this works... if not, then we move on to something else.. like possibly the mibg therapy in cincinnatti....

ok, gotta run and get ready...

thanks to all who think of us

with love

rhonda

Sunday, May 13, 2007 10:48 PM CDT

The new picture at top of page is at Dollywood yesterday.. Thanks soo much Sherry Powell for the tickets!! The girls had soo much fun!!!

We had a good day today..Didn't do much to speak of but just enjoyed being together.. These hard times makes you sit back and reevaluate your life and come to appreciate every day.. Every second.. I am just soo thankful I have these 2 sweet girls of mine... And in most ways, we truly are a blessed family..

I'm just ever so glad I got to be the mother of these precious girls. And like we've learned before when our sweet Abby was taken from us soo soon, you just don't know how much time you will have with the people in your life.. And you learn quick to love harder, hold tighter to every day you do have..

Not that there aren't mistakes along the way.. but you learn to make them right faster...

Happy Mothers Day to all those mothers out there who love just a little bit more..

with all my love

rhonda

Friday, May 11, 2007 2:58 PM CDT

Well, this very long week is finally ending and once again we have survived!!

The Mibg scans show nothing on her skull, which surprised them that there wasn't even any residual there... the spine was completely clean.. no cancer.. still not sure what's going on with that but we do know it's not cancer... ok, they did see one new tiny spot on her pelvis. The strange thing is, it's right where they just did her bone marrow biopsy and aspirate....hmmm not so sure about that either.. our Sydney likes to do strange things and stump everybody!! lol

Soooo.. we met with Dr. Angel today.. he's going to put in her line tuesday.. we are hoping for a port and Dr. Malik is checking and will let us know monday which one she will end up with..

We are also going to sit with Dr. Malik on monday and discuss where we are going as far as treatment goes.. We are leaning toward the hu14.18 IL2 Antibody here in knoxville.. And there is also the Mibg therapy in Cincinnatti.... I suspect we will try the antibody first though....

Thats all I know really... Besides the fact that I have a ton of housework to do!!! Soooo I'm off to do that!!!

Thanks to all who think of us and pray for us!!

with all my love

rhonda

Saturday, May 5, 2007 9:26 PM CDT

Well, we've survived these past couple of weeks.. I tell ya, when Syd first got diagnosed almost 3 years ago and we learned how horrible this disease was, I just kept telling myself as long as we don't relapse we will survive this.. I always thought that if that ever happened that I just wouldn't be able to survive it..

Here I sit writing this.. And yes we are going to survive this.. It's amazing really, just what you can survive.. I thik God gives you the ability, even when you don't feel like you can... somehow you pick yourself up and continue the good fight...

We still don't have a plan... And that in itself is torture... The waiting.. wondering where else this monster is lurking... Oh how I hate it... This word cancer, that tears up soo many lives... I'm going to turn that hate around though and fight even harder because of it...

We go in on Tue, Wed and Thurs for another MIBG scan.. They still think it could be on her spine even though it didn't show up.. Sooo... we do that and see where else this monster is and then we fight....

If it is on her spine, or still some small amount on her skull then we have decisions to make on which phase 1 or 2 study to try.. possibly the antibody here, or maybe the mibg therapy in Cincinnatti or maybe Philly... Just alot of decisions to make.. Just have to hope that we make the right ones for her to beat back this beast...

If it's not on her spine and there is nothing else showing up anywhere else then we really have some serious decisions to make.. you have to have measurable disease to qualify for those phase 1 or 2 trials.. so, without that then we pray, and search and come up with something to keep it at bay..

Maybe some lower dose chemo?? just don't know yet...

I know alot of people have asked and are wondering why if they got it out and it isn't showing up anywere else doesn't that mean shes in remission and we don't have to treat??

I wish it were that simple.... This is a whole different ball game than the first time.. This is a relapse.. Which means that it came back after all the horrible hard things we did to it the first time.. It can potentially be very aggressive.. We have to attack before it gets out of control.... Just finding the right things is whats going to prove the most difficult...

Just pray for us this next week as we do these scans and the hard decisions to follow..

with all my love

rhonda

Thursday, April 26, 2007 4:11 PM CDT

I am feeling better today... Sort of this peace has come over me.. I know that may sound crazy since we just found out our sweet sweet little girl has relapsed from a very deadly monster.. but..... I am ready to fight....

We knew the odds all along, but you go on living life hoping against all hope that your baby will be one of the lucky ones....

And we have been lucky really.. She is almost 3 years out of diagnosis and to tell the truth, we weren't so sure we would get that.. And especially the past 2 years have been wonderful.. every single day that I have been blessed with this child is a miracle..

We are determined to fight this monster and have some more time with our sweet little girl..

She is doing great and is recovering really good from her surgery.. you would never even know that they did anything to her... Thats my girl.. She is a fighter..

And as long as she can fight, so can I....

I am a mommy first and if I break, who is going to take care of her??

We are kinda stuck right now.. She doesn't qualify for any of the phase 1 or 11 trials without measurable disease.. They took out her measurable disease.. He does think it's in her spine though and that for some reason it didn't light up on mibg.. I ofcourse don't want it to be on her spine but..... if it is then we can start with the antibody or mibg treatment that we have been looking into..
If not then im not so sure where we are going to start.. He feels like we need to take our time and make the right decision and I agree, but I also want to start treating right now before this monster takes off and we can't get it under control.. thats what scares me the most.. this disease taking over..

I have 100aith in Dr. Malik though and I know without a doubt that he will figure out what we are going to do..

Right now, I just look at this precious little girl of mine and I am just soo thankful that I have been blessed to be her mommy.. And every single second that she is in this world..... is a miracle..........

Tomorrow is my sweet Baillies birthday and we are going to have her a party sat.. She is soo excited and wants everything and anything to do with Hannah Montanna.!!!! she is soo funny..... I can't believe that my sweet redheaded child is going to be 10...

We are going to have fun and just enjoy this life that we have been soo blessed with...

Thank you all soo much for thinking of us and praying for us.....

with all my love

rhonda

Tuesday, April 24, 2007 10:24 AM CDT

I never in a million years thought i'd be sitting her writing something like this.. never.....

It seems that my sweet sweet baby is now again in a fight for her life... We haven't gotten the final pathology report yet, but under the microscope it looks like neuroblastoma....

I'm sick... in shock.. I really let myself believe that this wasn't going to happen again to this little girl I love sooo very much....

Dr. Malik is calling people.... trying to come up with a plan..... We go tuesday next week to take out the staples on her head and then we try and treat this monster...

I hate it sooo bad....

I just can't think right now....

just pray for us

r

Sunday, April 22, 2007 7:18 PM CDT

Well, tomorrow's the day... and i'm scared outta my head!! All we can do now is pray pray pray..

Seems that's all i've done.. beg and pray... pray that my baby can escape the clutch of that monster called neuroblastoma one more time....

I know that God has seen this family through many many hard times.. and I know that he doesn't make these bad things happen to us....

I don't really understand why these things happen to these precious children of ours.. but I do know that whatever happens... God will see us through.... That's all we have really.. The knowledge that God will help us through whatever life throws at us....

And I will say this.. No matter how very terrified I am at what might happen.... I WILL NOT LET NEUROBLASTOMA WIN.. NEVER...... I will not let that monster destroy this family.... We will continue to be happy despite it.....

You can shake us..... but you can't break us!!!!

thanks to all who think of us

with all my love

rhonda

Thursday, April 19, 2007 7:04 AM CDT

Ok, We go into surgery on monday. He said she probably won't have to stay but a day at the most.. I was surprised at that but glad all the same..

I don't know when we will get the results of what exactly is on my baby's skull.. hopefully sometime next week... I'm at the point where I just want to know what this is, good or bad, so we can get on with it.. This wait stinks!!!

She has been fine really. going to school and is happy as always.. that I am soo grateful for.. whatever it is, it doesn't hurt her at all....

We are going saturday on a hellicopter ride.. Seth from community relations called and said that some hellicopter company wants to do something nice for these kids and they are going to give us a tour of the hellicopter museum and then a hellicopter ride!!! This will be saturday.. they are excited!! that will be a good distraction for us...

Anyway, we are just hanging in there.. I'm soo scared I can't see straight.. but..... I have to hold on to the fact of how far she's come.. and how she has seemed to beat the odds over and over... her whole life has been spent fighting... I think it's time for her to just be a kid...

Pray for us next week.. that we get through this.. and come out beating those odds...... one more time!!!!!!

love

rhonda

Monday, April 16, 2007 5:59 PM CDT

Dr. Malik called and there is nothing in her bone marrow!!!!

I am sooo relieved!!!

Now we move on to biopsy of her skull...

I suspect sometime this week....

pray that that goes ok and it is nothing but some crazy fluke and my baby can get on with enjoying her life!!!

thanks to all who think of us

rhonda

Friday, April 13, 2007 12:24 AM CDT

We are home now from the bone marrow.... Sydney did great and has so far eaten a whole thing of grapes, a rice crispy treat, some hershey kisses or (leah kisses) as we so love to call them over our sweetie in radiology..lol a sucker, several plastic eggs filled with chocolate.. that was all just in clinic.... on the way home she wanted a chicken sandwich and a hot fudge sundae.. both long gone now!!! And now I have her propped up on the couch like the little princess she is and we couldnt find a bell (probably because it's still in a box somewhere from our recent move) lol sooooo... iv'e told her to clap her hands and go "chop chop" when she needs something.... he he

well... as you all know Sydney just doesn't like to do mean things... and princesses just don't like make demands so she kinda looked at me like i was nutty at first and didnt want to do it..... well.. that didnt last long..lol i keep hearing these little clapping noises.... ah.... i love taking care of her.. and we all know I could use the exercise!!!!

ya know.. on paper Sydney looks fantastic!!! Her blood counts were perfect... her urine vma/hva (tumor marker) was normal... her LDH (another tumor marker) normal... and when he looked at the marrow on the slide he didn't see anything.. it looked normal.. but... we still have to wait on the final report...

This is all still very worriesome.... I mean.... with a history like hers and how bad neuroblastoma is about coming back.. well..... it pretty much leads you in one direction......

but i've not given up hope yet......

and where there is life, there is surely hope!!!!

thank you all who think of us

rhonda

Thursday, April 12, 2007 4:21 PM CDT

I'm feeling better today.. Scared Scared but some better....

We are going to clinic tomorrow morning for a bone marrow biopsy and aspirate..

Hopefully we'll get the results monday and that will tell us what will happen next...

Met with the Neurosurgeon today and that was super fun...

Not.....

I guess with her history they just have to assume its Neuroblastoma... But man.... I sure wish I could think of SOMETHING ANYTHING Else it could be....

All I do know is my baby is beautiful and sweet and has kissed me more than a hundred times today.. She made me take her to McDonalds and she ate 2 whole chicken sandwiches!!!!!!

And they are now out playing and having a blast and we are getting ready to have a party for "sweetie" who just turned 2 today!! (sweetie is a stuffed dog that Kerri in radiology bought her 2 days ago) lol sooo... we bought 2 small cheese cakes... chocolate for "sweetie" and strawberry for "stitch" (baillies stuffed friend) lol

yeah, we are kinda nutty...... but sooo sooo happy.....

guess who's eating the cakes??????

lol

thanks soo much for all the thoughts and prayers...

we Dudleys may get a wee bit down but you can't keep us down for long!!

So long as there is life, there is hope!!!

And hope I have!!

r

Wednesday, April 11, 2007 9:14 PM CDT

I'm sitting here and my house is quiet.. My sweet girls are asleep in their beds and are happy... My husband is at work and I have all this time on my hands to think..

I'm trying so very hard to stay positive... I really am.. I know that in the whole scheme of things, my duty is first to my kids.. And their happiness... A depressed Mommy does not a happy family make...

But it is soo hard when my heart is soo heavy with this worry.. For this child I love soo soo dearly..

For this sweet angel who tells me a hundred times a day that I am the best Mommy she ever had...

For my sweet Baillie who comes up to me and tells me that she is praying for her little sister. The only sister she has.. She has already lost one sister.. I can't help but wonder how much more this little family can take...

There is this little part of me that keeps wondering what in the world I have done so wrong?? All I have ever wanted in my whole life is my babies... And all I have done is fight with everything in me to keep them..

If there's anyone out there reading this, just pray for my baby... And pray that this momma finds her way through this... for right this second I am feeling lost....

We meet with the Neurosurgeon tomorrow morning and on friday we do a bone marrow biopsy and aspirate.. They want to do that before the skull biopsy because if the bone marrow is positive then we know what we are dealing with and won't have to put her through the biopsy..

If the bone marrow is clear then we are going to do the skull biopsy next week....

thanks to all who keep us in your thoughts and prayers

r

Wednesday, April 11, 2007 8:31 AM CDT

Going in for Mri of head today at 1..... then we meet with Neurosurgeon Dr. Harris tomorrow... I guess we will know more tomorrow after we meet with him whether they are going to do a biopsy or not...

I had a really rough day yesterday... just letting myself get devestated...

today I am more hopefull...... life has to go on.. might as well do it with a smile on your face....

I know that Sydney feels fantastic and that is enough to keep me going.. the fact that she is loving life.. it's contagious.... how can I be miserable when I see someome who has been through soo much.. yet still enjoys every second???

We learn alot from these little souls who fight so hard... if we only open our eyes....

I guess mine were just shut a little yesterday.... today is a new day...

I have faith......

and for now....

that is enough

r

Monday, April 9, 2007 7:40 PM CDT

Where to start.....

I tell ya, these past couple of weeks have been weird.. First, we go to Sydneys transplant Dr. for her 2 year post transplant checkup.. That's the picture on the front page..

Everything looked great... but.... they did a routine chest x-ray and found something on her spine.. Here we come back to Knoxville where they do another x-ray of her spine.. It showed 3 places.. Soo....... off we are to rescan again.... We did ct scan of her chest, stomach and pelvis.. all clean... no new tumors on original sites.. Then off to Mibg scans.. Well..... the spine is ok.... no tumors so I guess she has fractured her spine in 3 places.. We will have to deal with that when we get all this other stuff under control...

But..... it showed something on her head... We are all just stumped... ??????

Her blood counts are good... Her urine vma/hva is good... her ct scan was good.... just soo freaky....

We really just don't know what it could be... We did an x-ray of her head and it didn't tell us anything.. And today we did a ct scan of brain.... I haven't gotten the results of that yet...

They really don't know what is going on.. Dr. Malik did say today that it would be unusual for it to be Neuroblastoma because everything else looks so good but nothings impossible.. I just don't think they know...

I was really down a couple of days ago... just heartbroken... just couldn't get out of my head what in the world I would do if this were Neuroblastoma coming back.. Knowing what that would mean.. Knowing that I could very possibly lose my sweet sweet girl..

I'm still very very scared.. And it still devestates my soul at the thought of what this all could be.. but..... I am coming around... and now I will tell you why.....

I look around me... Which, really is something alot of us forget to do in everyday life.... I look at people who have fought bigger battles than I and survived... I look at what my life is and how much worse it could be..

What has really helped is the people that I have met along this journey of ours... One in particular is a wonderful gal Janet.. I tell ya, right this second I can't remember her last name.. but it doesn't matter right now... She is a volunteer in clinic... I have loved her from day one.. She had a son who died from Brain cancer years ago... Well... when we were in clinic when this all started with her spine I saw her.. she played with Sydney.. And after about an hour or so I asked her how her new grandbaby was..... She just looked at me.... I was sick... I asked "was it sids"? she just looked at me again... then she said no.... it was cancer.... Oh man.... what that did to me... He was 9 months old when he died.. I can't recall exactly the names but I know he had 2 different kinds of leukemia... and had a bone marrow transplant.. and was a fighter...

I was just sooo devestated for her... How could she survive this?? her son, and now her granson???

and here she still comes to clinic and still helps these little kids.. we can all learn from someone like her... and her family... She told me that they had read this website and she said I was a very positive person and to find that.. hold on to it... I didn't feel very positive and haven't for a week or so... I have just felt sick... felt this doom over me... and through this all I keep hearing her tell me about her sweet grandbaby and I watch her.. And see that she still finds a way.. to get up each day.....

and so my dear friend Janet...... so can I......

Thank you to all the wonderful souls that have touched my life and somehow.. through your words.. or just simple kindness.. have helped me to back away from the ledge.....

And to all the guys in radiology and clinic who made me smile today when I really didn't want to smile.. thank you... for you helped me in more ways than you could ever know...

To Nancy who tries her hardest to rap even though she sounds chinese!! And to sweet sweet Leah who so loves my sweet little girl..And all the other guys down there who come just to see my little sydney smile.. To my sweet angel Kim who swears that Sydney is special and loves her soo much... And to Dr. Malik with his kind eyes...there are soo many more I could name but fear that my hands would fall off from typing!!! just know that you all touch me...

And for today... just today.. I am ok.... and I know that no matter what... tomorrow.. I will be ok too....

Thank you all who think of us

rhonda

Monday, March 12, 2007 3:08 PM CDT

In three days it will be 2 years since Sydney had her stem cell transplant!!

I can't believe it has really been that long.. Seems like just yesterday~!!!!

I read some of my journal history around that time and I really can't believe where we have been and just how far we have come.. It's amazing really..

This journey...

It is soo scary.. So hard... but....

in the darkness...... you can find light!!!

I was just talking to my mom about Sydney and how very lucky we are..

How this sweet little girl of mine jumps out of the bed feet first, with a smile on her face, ready to face the day..

How we can all learn..... to live like a child who has faced death........ and won!!!!

I hope you are all well and life finds you living it to its fullest!!!

like the Dudleys!!!!!

with all my love

rhonda

Friday, December 22, 2006 5:30 PM CST

CLEAN SCANS! CLEAN SCANS!! CLEAN SCANS!! CLEAN SCANS!!

CAN YOU SAY CLEAN SCANS??? YIPPIE!!!!!!!!!!!!!!!

GOD HAS SEEN US THROUGH ONE MORE TIME..

WE ARE TRULY BLESSED

COULDN'T ASK FOR A BETTER CHRISTMAS PRESENT THAN THIS.

MAY YOU ALL FEEL AS BLESSED AS I AM RIGHT THIS MINUTE...

WITH ALL MY LOVE

RHONDA

Wednesday, December 20, 2006 10:39 PM CST

Hi all,

Just wanted to say hi and wish everyone a Merry Christmas!!

We were at the hospital all day yesterday having Sydneys scans done. She had Echo of heart, CT scan of chest, stomach and pelvis and a bone scan..

Haven't gotten any news yet.. we go to clinic on friday for checkup and results.

Say a little prayer that we receive the best Christmas present we could ever recieve!! That my sweet girl remains cancer free!!!!

Wishing you all the very best this Christmas!!!

with all my love,

Rhonda

Sunday, November 26, 2006 7:38 PM CST

Guess who turned 6 today??? yeppie!!!!!!! my big girl is 6!!!!! I can't believe it!!!!!

We got her this baby alive doll that talks, eats and actually poops its diaper.... its the funniest thing ever!!!!! Green Poop!!!! lol She goes "uh oh, I made a stinky" lol its sooo cute!!!!!

I made her hamburgers shaped like mickey mouse heads and hotdogs.. and a funfetti cake with mickey mouse ice cream...

We are going to take her to build a bear tomorrow to let her build a bear she wants.. its really cute.. its a dog and you put pink boots and a pink hat and coat on it.. and a pink carrying bag... right up her alley!!!!! lol she is all girl!!!!

We are blessed more than ever today.. turning six is a milestone in itself... turning 6 2 years after a diagnosis of stage 4 neuroblastoma is incredible!!!!!!

God is truly Good......

Thanks for all your continued thoughts and prayers...

with all my love

rhonda

Wednesday, November 22, 2006 10:48 PM CST

Here we are again; one more Thanksgiving upon us. And here I am feeling like I have been given the world.

It's funny. My mom and I were talking earlier about how Thansksgiving and I dont always mix. One year I cooked not realizing I was in labor 12 weeks early.. One year I had a broken foot.. that was pretty, let me just tell ya..

We have no family in this great state of Tennessee so Mike and I are pretty much on our own.. We have accepted that. When you move away from family you have to learn to take care of yourselves.. I cook even if we dont have out of state company or we dont travel.. I want my girls to love thanksgiving as much as I do.. They need those warm fuzzy feelings that I always get this time of year..

What im getting at is: my foot healed.. yeah I had a thanksgiving with a baby 3 months early.. she was born alive though.. and a fighter.. So, I dont have bad memories concerning Thanksgiving.. Quite the opposite.. All these things in my life have made me even more thankful for the life I do have..

As I was shopping for all these foods I am making for my sweet family tomorrow, I couldnt help but think of all the people that couldnt afford to buy food.. All the people that are going to spend this thanksgiving with someone they love not with them..

And then I think of all the things that have devestated my world, the fact is, I am going to be sitting down and giving thanks tomorrow with my 2 sweet girls and my husband.. And to me that is worth more than all the money in the world..

My sweet little Sydney will be turning 6 on the 26th and I just cant believe it.. We came too close to losing her and to have her turn 6 is huge!!!!!!

I am blessed!!!!

I hope that you all are feeling blessed also this Thanksgiving...

with all my love

rhonda

Tuesday, October 24, 2006 8:41 PM CDT

WE ARE HOME!!!!!! WE HAD THE TIME OF OUR LIVES!!!
I'LL POST MORE LATER.. I HAVE SOO MUCH TO DO!!!

THANKS FOR YOUR CONTINUED THOUGHTS AND PRAYERS!!

RHONDA

Monday, October 16, 2006 12:52 AM CDT

Look out Mickey, here we come!!!!!! Our flight leaves at 7am tomorrow morning!!! The girls are sooo exctied!! We had just a few wee issues yesterday over Sydney wanting to take our hamster Elvis with us, but it seems to be ok now!!!!! he he

Thank you Dream Connection, our local chapter of the Make a Wish Foundation!!! We are staying at Give Kids the World which is a resort just for kids who have had life threatening illnesses.. It is soo great!! The kids get tucked into bed by a big 6 ft bunny!!! They get gifts left in the villa for them. We get 3 days at Disney, 2 days at Universal Studios and one day at Sea World.. And we dont have to wait in line!!!! It just brings tears to my eyes at the thought that through donations our kids who have been through so much can have such an awesome trip..

We have to pay for Nothing!! From our airline tickets to our rental car for the week, to all our meals plus spending money.. It is all payed for!!!

It was all started by a man who owned a hotel in Orlando sometime in the 80's.. This little girl with Leukemia wanted to go to Disney World and wanted to stay at his hotel.. Before all the plans were made and she could get her wish, she died.. This man never forgot that. He made it his mission to provide an all expense paid trip for a week to all children with life threatening illnesses and their families.. So they could spend a week not worrying about medicines and hospital stays.. Not worrying about medical bills or just the stresses of everyday life..

I think this man will be rewarded greatly one day for all the joy he helps to bring to soo many children.. many of whom only have moments left to live..

ok, enough before I cry all day!!! This is supposed to be a happy time!!! lol Just thinking about all the little ones who have walked those streets before us and how many of them are now looking down at us from heaven....

And how very grateful I am just for today...............................

r

Tuesday, October 10, 2006 8:03 AM CDT

One week to go until we head off to Disney thanks to the Dream Connection!!!!!

It is the girls fall break so they won't be missing any school.. We will be gone from tuesday the 17th until the following sunday..

The girls are sooo excited!!!!

Life is still really good in the Dudley household.. Just happy for everyday that we are together..

Baillie is doing great in 4th grade and loving softball.. Sydney is absolutely loving kindergarten!!! It just amazes me how much my girls love school.. They sure didn't get that from me!!

We are truly just blessed....

Thank you all soo much for your continued thoughts and prayers..

with all my love,

rhonda

Tuesday, September 19, 2006 4:09 PM CDT

Dr. Malik called today and my sweet sweet girl has beat the beast one more time.. Clean Scans!!!!! Clean Scans!!!!! Clean Scans!!!!!

We are truly a blessed family...

All the newest pictures are of her day at the hospital yesterday... I got alot of pictures of some great people who took care of her back in those sick sick days..

One nurse, Nancy, in radiology was teaching her some ball room dancing.. I forget what the dance was but Syd was loving it.. I couldn't have asked for better people or a better hospital to take care of my sweet girl.. And to you all, we love you!!

Please continue to pray for the Thomas Team. Sweet Christi will soon make her way to heaven..

www.christithomas.com
www.christithomas.blogspot.com

thank you all so much for your continued thoughts and prayers!!!

with all my love,

rhonda

Friday, September 15, 2006 9:38 AM CDT

Keep Sydney in your prayers on Monday as she goes in for Scans..

We will be having a ct scan and bone scan..

We go back on the 22nd for results and checkup and to have her off treatment party....

Please continue to pray for the Thomas Team.. Sweet Christi is still holding on...

www.christithomas.com

thank you all for your continued thoughts and prayers

rhonda

Wednesday, September 13, 2006 5:11 PM CDT

I HATE HATE HATE NEUROBLASTOMA!!!!! I HATE HATE HATE ANY DISEASE THAT TAKES THE LIVES OF PRECIOUS LITTLE CHILDREN AND LEAVE IN THEIR WAKE THESE DEVESTATED PEOPLE WHOSE LIVES THEY TOUCHED...

PLEASE CONTINUE TO PRAY FOR THE THOMAS TEAM.. THIS CHILD HAS TOUCHED SO MANY LIVES.. THIS WORLD WILL NEVER BE THE SAME WITHOUT HER IN IT..

PRAYING FOR PEACE FOR SWEET LITTLE CHRISTI AND HER FAMILY..

JUST BREAKS MY HEART..

WWW.CHRISTITHOMAS.COM

R

Sunday, September 3, 2006 7:48 PM CDT

Please everybody join us all in prayer for a sweet sweet little warrior Christi Thomas.. She has been fighting Neuroblasoma for 4 years now and is not doing good right now..

This disease makes me sick.. I hate it..

Christi is from Ohio and has never been in remission. She is a pioneer for all of our kids.. She has done treatment before anybody else..

We have never met them in person but their strength and courage know no miles.. They teach us all how to keep fighting. How to be better people....

They are at CHOP right now continuing to fight for that precious little girl...

Her website is

www.christithomas.com

let them know you are praying for them....

with all my love

rhonda

Friday, September 1, 2006 1:21 AM CDT

It's almost 2:30am and I sit her going over in my head these past years of my life. And the things that have changed who I am forever..

My sweet Abigail would have been 8 today. She was born on 9/01/98 at 9:01am.. She weighed 2lbs 13 1/2 ozs and was 15inches long.

It's funny the things you remember. I can still remember the exact second she came into this world. And the exact second she left it.

I remember the shape of her little head, and the way her black hair swirled in the back like my other babies. And though I only held her twice; I will never forget the feeling of having her in my arms..

A mother never forgets..

I will never forget..

Thursday, August 3, 2006 9:42 PM CDT

Here are just some brief glimpses into our life and the people that are in it.. Some family, some are wonderful souls that dedicate their lives to helping our children. there are some pictures of kids who are watching us in heaven and some who are still fighting... in all these pictures are people who have touched our lives in some way.. and to you all, we love you.. these are just a few glimpses into our journey..

there are many more souls that I dont have pictures of but have touched our lives just the same.. and to you all, we thank you... we could have never survived this journey without these people in it...

I just thank God everyday for the blessings that we have had in our life.. hardships for sure.. but many many blessings throughout.....

with all my love

rhonda

Saturday, July 22, 2006 9:05 PM CDT

Life is good.....

We are blessed beyond words.....

Wednesday, June 28, 2006 3:34 PM CDT

Went to clinic today and Syd has once again beaten back the beast!!!!! Clean Scans!!!!!!! Everything is fantastic with her.. She is up to right under 44 pounds!!!!! She had lost down to 35 at transplant.... She is just really doing soo good.... I am more blessed than I can ever say...

After I finish writing this I will be driving to the viewing of little Mathew Hileman..He was one brave little boy.. He fought like a true champ.. It didnt beat him though.. He now has the ultimate victory!!!! Just sooo sad for the ones he has left behind..... Please keep that family in your prayers tonight and all the other nights to come...

And please keep the Futterman family in your prayers as they are still fighting the good fight...

with all my love

rhonda

Monday, June 26, 2006 9:06 AM CDT

Please pray for the Hileman family as little Mathew died this morning.. I am just too sad for more words......

Wednesday, June 14, 2006 9:09 PM CDT

Please say a prayer for the Futterman family as they are preparing to bring Abi home from Nashville sometime tomorrow.. They have just found out that her cancer has progressed rapidly and there is nothing left to do.. She has Medullablastoma and we met them in nashville while her and sydney were getting radiation at the same time.. they have a website at carepages under abifutterman......

Continue praying for little Mathew Hileman who is at home with his family also.. He is a relapse Neuroblastoma and there is just nothing left they can do for him...

And also keep in your prayers little Victoria Houston who is a new Neuroblastoma patient..there were problems during surgery to remove her tumor and she has been in PICU since...

And please continue to keep the Crosby family in your prayers as they still try to find a way to go on without their sweet little Katie....
www.caringbridge.org/tn/katiecrosby

Please God, help me to understand why babies have to suffer...I know you arent supposed to question but I just cant wrap my brain around why... if they have to go then why not just let them go.. why the suffering?? please someome just tell me what good comes from a child suffering?? laying for days, weeks, months in horrendous agony.. waiting to die... can someone just please tell me why?? what are we supposed to learn from watching a child suffer??

Every one of these children have taken a piece of my soul..and God forgive me, but I just dont understand....

r

Tuesday, June 13, 2006 11:54 AM CDT

Ya know what, things are ok.. I was just having a moment.. they are bound to happen every now and then.. I feel sorry for myself and then have to give myself a good slap and realize how very lucky we are..

Truth be told, this is one devil of a disease, there is no getting around that.. but....... we are here today and really for neuroblastoma that is pretty remarkable...

I just want to say that for today I am ok.. getting nervous about upcoming scans but ok nonetheless..

Just so very hard to see so many kids lose their lives to a monster that tried its best to take the life of my little girl..a monster that loves to hide and wait.. sitting there with an evil grin on its face, waiting until jsut the right time.. a time when you think you have finally won.. I tell ya, I really think I was born to fight but I guess I just wish I didnt have to fight so hard and so often..

anyway, im using this as my place to vent i guess.. i think i burden the people in my life sometimes.. they just cant take the sadness and reality of this..i think they think if we voice it then it will come true, but what they dont understand is we have to get it out sometimes.. you spend so much time putting a smile on your face and pretending that you are ok.. and all so the people around you dont have to feel uncomfortable.. so they dont have to get upset..its not their faults... its just the reality of this life we have been forced into..who wants constant sadness??

oh well, i sound worse than i am i guess.. i am technically fine...... ha ha i really am... there are just a few too many wee ones losing their battles and it just sucks... no other way to put it.. it sucks!!!!!

thank you all for your continued thoughts and prayers....

with all my love

rhonda

and please continue to pray for all the little ones and ther families who fight these battles everyday...

Sunday, June 4, 2006 11:54 AM CDT

Hi all, things are going good here in the Dudley household.. Today was this really huge milestone for me.. This may not seem like much to some but there are some out there that will understand.. I Finally threw away all her broviac supplies!! I know I know,its insane!!! Shes had that line out for how long now??? There was just this part of me that couldnt get rid of it all.. Just this fear.. The truth of what this ugly monster is capable of.. I dont know really.. Not like I needed all these containers full of dressing change kits and saline and all that as a constant reminder of what we have just went through... I live with that every second of my life!!! Anyway, finally Mike said "honey, if for some horrible reason she did get sick again, home health will bring more supplies". He's right and really I dont need to look at all that stuff every day... I dont need to think about where we've been just try my best to think about where we are going...And pray like mad every day that my littlest princess can continue to beat this horrible monster!!!

Just soo hard sometimes.. This life we've been thrown into.. You are never really the same. How could you be?? Im not kidding when I say I could be told tomorrow that I was dying and I could handle it.. I would be sad to leave my family but would accept it. To have to face that same fear with your child?? Now that is another story..Even though she is running around and is so well right now, you cant ever really get that outta your head.. The fact that when you become a parent you just assume that you will die first. It seems like we keep getting put into these situations where that theory is put to rest.. First our little Abby and then our scare with miss Sydney..

I try so hard to go through this journey in just the right way.. Say the right things. Tell myself over and over how we are supposed to just be thankful for having her right now and forget about the rest.. But really thats bull.. I am sooo soo grateful, but I can never forget how real this is and how we still have a ways to go before this tale is all told.

I guess Im kinda a downer today.. Scans are coming up soon and I always get a little freaked out at that time.. plus there are several kids here that are having a really hard time and it is just sooo overwhelmingly sad..

please pray for little Mathew Hileman who has relapsed Neuroblastoma and is at home to be with his family..

then there is little Abi Futterman who just relapsed from Medullablastoma.

and there is a new family to this world of neuroblastoma who is in PICU right now and does not have really good odds right now.. she went in for surgery to remove her tumor and her bowel got nicked in surgery and they didnt find out for a week.. Her name is Victoria Houston and she really needs all the prayers she can get..

I just dont think I will ever understand why this has to happen to these sweet sweet kids..

thank you all for all your continued thoughts and prayers...

with all my love

rhonda

Sunday, May 14, 2006 8:10 PM CDT

TODAY, AS IN EVERY DAY I AM BLESSED....JUST SOOO SOOO BLESSED.....

Sunday, May 14, 2006 6:26 PM CDT

TODAY AS IN EVERY DAY I AM JUST BLESSED..... JUST BLESSED.....

Wednesday, April 5, 2006 3:25 PM CDT

I'VE GOT PIGTAILS YES I DO..........

I'VE GOT PIGTAILS HOW ABOUT YOU......

OH, AND A LITTLE SNOT TOO !!!!!!!!!!!

Hi all, yes I am really excited about Syd finally having enough hair for two teenie tiny little nubs of pigtails!!!!!!!

yes yes I know she had cancer so what importance is a little hair.... well not much to tell the truth.. I really did love that little bald head of hers..... there's nothing like snuggling and rubbing that soft little bald head.....and to be perfectly honest, when your kid has cancer kids with hair look funny to you.... just like it was weird for me to see kids running around without tubes sticking out of their chests.. i would see one running like crazy and think stop stop you might pull your line out.... then realize what i was thinking.. its just what you get used to....

more than anything is the fact that shes not looking like a sick kid anymore....yes, maybe some curiosity as to why a 5 year old has such a small amount of hair.. but theres nothing like a bald kid walking around that screams look at me im pretty sick.....

No, I dont really give a flying hoot what people think either.. Its more me as a mother having to deal with my sweet little angel having cancer....Thats why im soo excited.. The scans all say shes still cancer free and now her body is showing that as well....Shes grown so much and gained several pounds.. really she looks just like a regular kid... just really short hair....lol

Life really couldnt be better...

Did just find out that her hearing has gotten worse... she basically has no high frequency hearing left... we are having meetings now and tests to decide if she will be better suited going into kindergarten next year in a hearing impaired program...

It's no fun really to have one more challenge added to the list of challenges shes had to face in her life.. but.... I guess it's a pretty small price to pay for life.... we knew going into treatment what it could do to her hearing.. life/hearing/life/hearing..... ummmmmmmmm its a no brainer for me.......

really its all about perspective... this is an evil evil disease... we just count our blessings that she is with us today.. and if that is the only side effect she has from all this treatment then I am just thrilled....

We went to Nashville friday for our one year post transplant checkup with Dr. Frangoul....it went well and he was pleased with her.... He said if she could go one more year without relapse then she is home free... I sure hope he is right...

God has blessed us really... Cancer is not a blessing..... surviving it with your heart still intact and a smile on your face is..........

thank you all soo much for your continued thoughts and prayers....

love to you all

rhonda

Wednesday, April 5, 2006 3:25 PM CDT

Tuesday, March 21, 2006 2:32 PM CST

Hi all, Things are still going good here in the Dudley household.. Still really happy about those clean scans!!!

Sydney is going in for outpatient surgery tomorrow to remove her adenoids, put tubes in her ears and to drain her sinuses...

She just cant kick these constant sinus infections and fluid in her ears. All that fluid affects her hearing aids too..

They did a ct scan of her sinuses and it was just horrible.. I hope that this will fix the problem.. Poor kid has had nothing but snot snot snot for months...

This is a pretty easy procedure especially considering all that shes already been through.. Baillie asked if it was gonna be 11 hours like her big surgery.. I was like, no honey this is easy... We forget sometimes about these siblings and the worry that they must have for their brothers or sisters..

Daddy went out and bought her a new dora the explorer game boy game to play while she waits and recovers tomorrow.. She was excited about that but a little worried about getting a shot... Sometimes you miss those days of having that central line.. ummm sometimes......lol

Thank you all for your continued thoughts and prayers.. And please continue to pray for the Crosby family.. They are just the best little family.. We miss you sweet Katie Bug!!!!!!!!!

love to you all
rhonda

Friday, March 17, 2006 2:43 PM CST

Clean Scans!!! Clean Scans!!! Clean Scans!!! Can I say Clean Scans!!!

Seems that we've beat the beast one more time!!!!

Thank you all soo much for your continued thoughts and prayers!!

Did I say Clean Scans??? Ha Clean Scans!!!!

Beating this thing one prayer, one smile, one day at a time...

love

rhonda

Wednesday, March 15, 2006 4:13 PM CST

Hi all, Things are going really good here... Me and the girls took off to Ohio this past weekend to see my parents and sibs...We decided to go last minute so Mike couldnt go because he couldnt get it off work... We missed him, but did have fun though... Just good to see family... we missed them sooo much!!!

Sydney had bone scan and ct scan today.. We thought she was due for MIBG scan and Bone marrow aspirate but seems that she isnt.. We are going to clinic friday so pray for clean clean scan results!!

Today is Sydneys one year anniversary of her stem cell transplant!!!! I really cant believe its been a whole year.. Hey all you Vandy gals!!!! Last year this time, we were hanging out with you!!!!! Vandy did treat us well I have to say!!!

Things are just going soo good... I cant be more blessed than I am right now.. Just utterly blessed......

Thank you all soo much for your continued thoughts and prayers. And please keep praying for the Crosby family.. We still miss you sweet sweet Katie Bug!!!!!

love
rhonda

Saturday, February 18, 2006 11:28 PM CST

Hi all, Things are going pretty good here in the Dudley household.

Today Mike and I have been married 12 years!!! Been a rough 12 years I tell ya, but I am thankful that our little family has managed to stay together.

Everyone is doing ok.. Baillie had to go to dr. for an ear infection. She is on antibiotics and is feeling better.. She is just never sick so that was weird taking her instead of Sydney.. Sydney went with us and she was soo cute.. She kept patting Baille and telling her that it would be ok and she would help her.. Its pitiful but sweet. She hadnt seen her pediatrician since diagnosis and she really didnt remember going there before.. All she remembers is clinic and her oncology doctors..

I ended up in clinic with Sydney twice this week. She woke up with a fever so off we went. I guess its another bloomin sinus infection.. She just finished 21 days antibiotics for one a week or so previous.. Those babies are sure hard to kick I tell ya.. Then we got a call to come back because something was growing in her blood taken the day before.. we got there and hung out in the room for a while and then they told us to go home. I guess it was a contaminate...oh well, atleast it wasnt something wrong with her.. It didnt kill us and shes not sick so everything is cool..

I really cant complain.. It feels pretty good to be "normal" again.. Im not so sure you can ever go back and be "normal" after this, but we're sure gonna give it our best shot..

Thank you all so much for your continued thoughts and prayers...

And please dont forget to keep praying for the Crosby family.. They have a really rough road ahead of them.. We miss you sweet Katie!!!!

www.caringbridge.org/tn/katiecrosby

love to you all

rhonda

Tuesday, January 31, 2006 7:00 PM CST

Please say a prayer for the Crosby family today. They lost their sweet Katie early this morning.

I met Misty and Katie while staying at the Ronald Mcdonald house in Nashville.. Sydney was there for radiation and was a month out of transplant. Katie was just out of transplant.. Come to find out that we lived just a few minutes from each other and had the same wonderful doctors. even the same pediatricians..

I fell in love with both of them instantly. Misty for her quiet strength, and gentle nature.. Katie for her beautiful smile and oh so much courage for such a wee one..

Im just sick.. this is just not supposed to happen...

keep them in your prayers.. they are just the sweetest family..

here is her website....

www.caringbridge.org/tn/katiecrosby

sign her guestbook and let them know that you are thinking of them......

rhonda

Monday, January 30, 2006 11:03 AM CST

Hi all, still doing great here!!!! And yes Grandma Joyce, we did go to chruch!!!! ha FINALLY!!!!!!! lol

We went to Sydneys teacher Ms. Amys church..We loved it!! I think we've found the church for us...

We are all still doing really good.. Baillie boo is doing great and still growing like a weed.. I tell ya they are eating me out of house and home!!!! lol that is good though.. Sydney changes everyday.. She's just this big 5 year old now.... she just talks and talks and talks............lol hmmmmmm guess she came by that honestly!!!! lol just took her a little longer...ha ha I hear her yacking in her room when shes supposed to be sleeping... just chatting with her babies...soo cute... Baillie cant hang, she passes out.. Sydney just lays in there chatting away....lol

Mike is good just working alot... We will be married 12 years on the 18th!!!! Cant believe its been that long.. and we've actually survived without killing each other!!!!!! lol

All in all we are just happy and well....Things just seem soo normal!!!!!! Between you and I, I think I like this whole normal thing........lol

love to you all

rhonda

Thursday, January 26, 2006 12:02 AM CST

Hi all.. Things are going really really good in the Dudley household.. All of those scans came back completely normal!!! I think I was still waiting on that Mibg last time I posted...It was also clean....

Weird to be going to clinic only once a month... ummmmm in a good way though!!!!!! ha ha wont hear me complaining!!!!

We will go monthly until March and then she will have a repeat of bone marrow aspirate and biopsy, ct scan, bone scan, mibg and urine vma/hva... After that she will go every 3 months until Dec next year.. I think that bone marrow will be her last unless they have a reason to suspect something.... i think she will have all the other scans though until next dec, then we go every six months until 5 years post retinoic acid.. after the 3 year after retinoic acid mark she will no longer have scans.. only cbc and urine vma/hva....really really scary to be going that long without scans... but..... I do know that if something was going on they would scan at any time...

For some reason I feel really calm about her.. There are times when I am sooo frustrated.. They tell you right off how horribly bad this disease is.. How the success rate is still soo low for these kids.. The reason being relapse.. They just dont know how to keep it from coming back..

I know I should be very thankful that Sydney has done as good as she has.. Some poor little souls never made it to this point.. I am, believe me I am... Just that you hear over and over how bad it is.. how it is soo hard to treat after relapse... then you finish treatment and they say see ya!!! go home and wait... No, I am not sitting here every day counting the days until it comes back.. Its just the reality of this disease is really crappy sometimes... I just wish soo bad that they could somehow find a way to keep this monster at bay....Its just very frustrating to know that its the relapse that ends up getting most of these kids and there is just no more treatment available..

Knowing all of that, somehow I do still feel ok about her.. frustrated about this monster, yes.. but ok..... I think that the real key here is to live live live... In the whole scheme of things we are very very lucky... There are those parents who never got to celebrate being NED... We can never get soo wrapped up in our own sorrow that we cant see someone elses.....

I dont want to dwell on this pain we've had to endure..You're walking a fine line on becoming bitter.. How can you witness a pure miracle walking around and then let bitterness overshadow it?? Is it ok to just say to hell with you Neuroblastoma? we are going to enjoy every day and not let you control our lives any more than you already have!!!!!!!!!!!!!!!!!!

Thats my motto for the week, month, ok, always.......

TO HELL WITH YOU NEUROBLASTOMA!!!!!!!!!!! WE ARE DONE WITH YOU !!!!!! WE ARE HAPPY !!! AND WE ARE FREE!!!!!!!!

love to you all

rhonda

Wednesday, December 28, 2005 2:44 PM CST

Hi all, I am very very happy to announce that miss sydney is once again showing no evidence of disease!!!!!

Her bone marrow, bone scan, ct scan and urine vma/hva are all perfectly normal!!!!!

We are having her mibg scan tomorrow, fri and sat.. we should get the results of that sometime next week.. I feel that they will be good also....

I hope you all had a great Christmas!!! We did.. The girls got all the things they wanted. And more importantly, we were all together, happy and healthy....

I cant tell you how very blessed i am...

thank you all for your thoughts and prayers....

love to you all

rhonda

Sunday, December 11, 2005 10:06 AM CST

Hi all, been awhile again... We had a great thanksgiving and Sydney had a fantastic birthday!! We had it at this place called events at sherlake where they have all this blow up stuff like slides and all that.. they had a blast!!!!!

Mike is doing good, just working his behind off.. Christmas time and the post office doesnt make a happy postal worker!!!! lol

Baillie is doing fantastic!! I tell ya, she is just the best big sister ever!! I dont know what I would do without her.. She is loving basketball and doing really good in 3rd grade.. Go Baillie!!!!

I am also very happy to announce that my sweet sweet girl is now off treatment!!!!!!!!!!!!! yes you just read right.. No more!!!!!!!!!!!! Its been a very long 16 months.. I look at her now and see how far she's come and it just amazes me..

She had this thing inside her for soo long and we just didnt know it.. It had such a strong hold on her.. I dont know if all of you remember, but she had been sick for a long long time before she got diagnosed... since she was 17 months old.. her eyes shook and so did her hands and she quit walking.. she screamed all the time..

I begged and pleaded for someone to tell me what was wrong with my baby.. for 2 1/2 years.. they thought it might me something neurological so we saw a neurologist.. did scans of brain.. but never stomach...

We took her to physical, occupational, and speech therapy 4 times a week to try and fix her.. She just screamed and screamed.. They called it ataxia...

It wasnt ataxia.... It was a very rare disorder called Opsoclonus Myoclonus Syndrome. About half of the kids with OMS have Neuroblastoma.. It is the brains reaction to that tumor.. That was what all the eye shaking and hands shaking and the loss of walking was about.. her brain was reacting to that tumor..If they had only made that connection then her cancer would have never gotten to stage 4..

She did manage to get around some, but speech was always extremely bad and when she got tired her eyes still shook sometimes.. We finally found the neuroblastoma when she stopped walking again... I took her to dr. 4 times before they finally decided something was wrong.. They just said it was a virus that settled in her hip... on the 4th time we saw another dr. and he knew something wasnt right.. sent her straight to hospital and the rest is history...

I do have a point in this very long story.. This treatment didnt just save her life.... It made her finally able to have one...... it was the most pitiful but also wonderful thing all at the same time after that first round of chemo.. Just that first round helped her soo much.. She could walk again and she started talking finally after all those years of being trapped in that body that just wouldnt work....

My best friend Gretchen puts it best when she says, "She Woke Up"..

And that is exactly what it was.. an awakening.. this monster had finally lost its hold on her..

As I sit here, she is walking through the house dressed up in her gown, a shirt over it, 2 different colored socks, a scarf and a skirt and singing santa clause is coming to town.....

I couldnt be happier..

we will have scans right before and after christmas.. Im not sure yet how often we'll have to come back to clinic but i think it may be monthly for a while and then go to 3 months and so forth.....

Thank you all soo much for being with us during these last 16 months.. Ya know, I guess I could get really really down about how much this sweet child of mine has had to endure.. But honestly, Right now, this very second, I am just happy.. You want to know why????

Because she is!!!

Thursday, November 24, 2005 2:46 PM CST

Hi all!!!!! Happy Thanksgiving!!!!!! I cant help but think back today... Five years ago today I cooked thanksgiving dinner, washed up and then went to the midwife because something didnt feel right... found out i was in labor 3 months early.. after lying upside down for 2 days trying to stop it, little Sydney made her appearance into this world. All strapping 2lbs 14ozs of her.... who would have known that all that fighting was just practice for things to come....

Thanksgiving is a day to give thanks and that is how i feel today.. Sooo thankful for all the blessings we have received... There was a time that we werent so sure Sydney was going to see 5.. Now its 2 days away!!!!!! We are actually coming to the end of her treatment!!! She just has this last round of accutane left and then we are done with her protocol!!!!! I am beside myself im soo happy!!!

I hope everyone is as happy as I feel today!!!I am soo blessed.

Thank you all soo much for all your thoughts and prayers!!!!!

with all my love
rhonda

Saturday, November 12, 2005 8:52 PM CST

Just had to take a moment and update..... Dr. Malik called at 8 this evening to tell me that Sydneys bone marrow is completely normal!!!!!!!!!

I am soo happy I can hardly sit still!!!!!!

My heart was telling me that this was just not happening to this sweet sweet child.. but that fear is ever present.. takes you to places you would rather not be.... sooo good to come out of that place and find sweet sweet hope again!!!!!

Thank you all again for all your thoughts and prayers, they have gotten this family through alot of really rough times!!!

And let us not forget to thank God, for without him, we are nothing!!!!!

with all my love
rhonda

Friday, November 11, 2005 6:06 PM CST

Hi all.. been awhile...again............just sometimes sooo overwhelming... too afraid to put into words your fears.... afraid they might suddenly become reality....too afraid to hope too much... afraid those hopes that you hold on to soo hard will all come crashing down..

Things are good really..... Sydney is such a sweet sweet child... grasping on to this newfound life with everything she has... seeing these two little darlings finally getting to play like normal kids.. with sydney being on equal ground is sooo amazing!!! Getting to finally be a normal kid....

Thats why its soo hard.. that fear that it will all be taken away... just when it began....

Oh, I know we cant live our lives in fear.. Can't let it consume us.... I just wish someone would tell my heart what my mind already knows....

Sydney had her bone marrow aspirate and biopsy yesterday.. havent heard anything yet.. Her counts were fantastic though!!!!! To me that is huge.. It has been almost 2 months since that suspicious bone marrow.. You would think if this monster were coming back then it would start to affect her counts by now...

Her last 2 urine hva/vma were elevated which is scary.. For you that dont know what that is.. Kids with neuroblastoma secrete this hormone..this test will show active neuroblastoma. On some kids that had elevated urine hva/vma at diagnosis (which sydney did) this can be a good prognostic tool in determining if it is coming back... they were only slightly elevated. and some foods can elevate it like.... caffeine, tea, yogurt, vanilla, citrus, chocolate.. and a few other things that i cant remember right this second... im hoping that it was something that she ate.. i really tried to restrict what she ate 2 days before this test that they did yesterday.. hopefully it will come back normal again... dr. malik did say it was kinda worriesome that it didnt go down this last time....

Honestly I dont get this gut feeling that its coming back.. she just acts and feels sooo good!!!! but...... this monster is tricky..... likes to sneak up on you right when you get comfortable......

All I can do right now is pray pray pray and do all I can do to keep her healty and happy.... And never... ever.... give up hope!!!!!!!!!!

thank you all soo much for all your thoughts and prayers!!!!

love to you all!!!!

rhonda

Monday, October 17, 2005 0:18 AM CDT

Hi all,

Things are still going ok here... Still no news on her bone marrow yet... All her other tests are still coming back normal though..

Dr. Malik is going to do another bone marrow and biopsy and an mibg but just not right this second.. His thoughts are that the biopsy probably wouldnt be any change right now anyway and why put her through that right now...

I think he wants to give it a few weeks to really see what is going on and if there are any changes from that last one...

Her counts are great right now and her urine vma/hva are normal also, which is fantastic!!!!!

She is just feeling soo good.. It is soo hard sometimes but you just have to step back from that overwelming fear and be happy for today.. this moment...

Sydney will get fitted with hearing aids soon because of the damage from the chemo.. He said it was a moderate to severe loss.. Like I said in previous posts, its ok... I think that things could have been alot worse..

Baillie just signed up for basketball and is soo happy!!! She is going to be soo good!!! That tall child of mine!! She is 4'10 and only 8!!!! She is already in 71/2 to 8 womens shoes!!!!!! She was born to be a lady vol!!! ha ha Look out in a few years guys, all you'll see is that red hair streaking across the court!!!!! ha ha

Thank you all soo much for all your thoughts and prayers!!!

love

rhonda

Wednesday, October 5, 2005 10:29 AM CDT

Hi all, just got back from clinic and then dropping Syd off at school....

Still dont know what that bone marrow means but did get some good news today...

Her platelets are back up!!!! We almost think it was a fluke anyway.. And..... her urine vma/hva was completely normal!!!!!!

Those are very good things....

Right now we are just at a wait and see kinda thing.... He said if it was a relapse it will show itself.. He is going to do a vma/hva every week and is doing another bone marroow aspirate and biopsy in 2 weeks..

It is possible that this could be some residual disease from before that we had just not seen up unitl now.. And that is what the accutane is supposed to take care of..

There are several possiblities, like scarring from past marrow involvement... Just hoping that its not new disease!!!!

Right now I feel better... Still scared, but better... I guess im just feeling like we cant let this crappy disease get the best of us.. Im not going to get so low that I cant pull myself out of it.

We Dudleys are fighters and we are determined to beat this thing!!!!!

Thank you God, for letting my little girl finally feel what its like to be normal!!! And for seeing us through this past year!!!!

And thank you all so much for all your thoughts and prayers!!!

I just want to give a shout out to Sydneys wonderful Dr. i just feel soo fortunate that he is the one taking care of her.. Knowing that your baby is in the best hands possible makes things a little less scary.. The sacrafices that they make to take care of these kids are huge. I hope they know how appreciated they are.. So... If any of you read this and are at the hospital and run into Dr. Malik, tell him what a good job hes doing!!!!! lol he deserves it!!!!!!!!!!!!!!

love to you all
Rhonda

Friday, September 30, 2005 3:03 PM CDT

Hi all... talked to Dr. Malik today... just not sure yet what is going on... Under the microscope her bone marrow aspirate and biopsy look normal but when they did this stain it showed 2 spots...

The pathologist said it could possibly be scarring from before but it had not showed up on her previous tests..

He said there was reason to be concerned because any new disease after such aggressive treatment and remission is bad...

Im not saying she has new disease.. we really just dont know yet.. He said that he cant say she has relapsed yet..and that we will continue with her treatment.

They are sending it off to see what they say about it.. I guess we will know something next week....

Just pray for this sweet little girl.... All she wants to do is live....................

love to you all

rhonda

Wednesday, September 28, 2005 7:16 PM CDT

Hi all, got Sydneys scan results today and her bone scan and ct are normal!!!!!! yeah!!!!!!!!!

Had her bone marrow test today. Am worried sick over her though.. her platelets have dropped since last week.. Not sure really whats going on..... Dr. Malik did say that it could possibly be the accutane. She had been off of it for 2 weeks though.. The other thing is bone marrow involvement.. Im praying for the accutane myself.... Bone marrow at this point would be devestating...

Will hopefully get the results tomorrow.. He said he'd call when they came in...

Say a prayer for us tomorrow that this sweet little girl continues to beat this horrible disease!!!

Thank you all for your thoughts and prayers.. WE love you all!!!!

rhonda

Wednesday, September 21, 2005 9:50 PM CDT

HI all, yeah I know its been awhile.. Just enjoying the last of these great summer days!!!

Things are still doing good... Baillie is doing great in school and is loving it.. She wants to play basketball so that will be fun..

Daddy is well. working all the time and playing with those girls every chance he gets... we are still enjoying our afternoons together....

Sydney is still doing great.. She had 2 hearing tests and there is some high frequency loss like we expected.. not sure yet what will be done if anything about that... she can hear.. just has trouble with some words and some situations.. she does talk really loud when we are in a setting where there is alot of other things going on and she says huh alot.... the lady at her school said she will learn to adjust.. it is kinda pitiful though.. just that she has had to fight for everything in her short life.. just one more thing i guess... we knew what to expect from the chemo and to us its a small price for her life... still pitiful....

anyway, she is having scans next week... you all say some prayers for our sweet little one that they continue to be clean!!!! She is having bone and ct scan on monday and bone marrow on wednesday....

Thanks again for all your thoughts and prayers!!! We love you all!!!

love
rhonda

Tuesday, August 23, 2005 12:17 AM CDT

Hi all, things are going pretty good here... went to clinic yesterday.. She is showing some small amounts of blood in urine so they are delaying her accutane for a week to see if it clears up..

Otherwise things are going great..they both are loving school... And as sad as I was to see them go, Mike and I are enjoying our newfound alone time.. Its been a really hard year on us all and there were times when we didnt see each other for a couple of weeks at a time.. Its nice to have a few hours in the afternoon to just be together..

Im still getting used to not having them though.. these girls are all I have and I guess im a little protective... I went out to lunch with a friend this afternoon and stopped by Sydneys school afterwards to check on her.. They were all laughing at me calling me a worrier....Its not that I dont want to let her go.. just that shes been through so much.... ok, so im a worrier!!!!!! ha ha

please continue to pray that our little princess stays in remission and this monster is never part of our lives again!!!!!

keep Kamys parents in your prayers also. I talked to her mom via email and she seems like she is doing really well.. its just such a sad thing.. i keep looking at her pictures... remembering her sweet little smile and her blowing kisses at sydney and snapping pictures of her as she walked by in the halls...the time that the nurses let them sneak and take a walk together when the doctors werent there... they loved that!!! i will forever remember that sweet little girl....but I will always be happy in the fact that she is now forever free from cancer!!!!
WE LOVE YOU SWEET KAMY!!!!!!!!!

thank you all for your thoughts and prayers!!

love
rhonda

Wednesday, August 17, 2005 0:11 AM CDT

Please keep little Kamy's family in your prayers.. Sweet little princess lost her battle last night... I will forever remember her sweet sweet smile....

rhonda

Monday, July 25, 2005 9:58 AM CDT

Hi all, things are still going great around here!!!! Just got back from clinic.. Dr. Malik gave her permission to go to school!!!! She is sooo excited!!!! She was singing "i'm going to schooool" soooo cute!!!!!!!

I think it starts on the 11th of august.. I'll be lost without them, but will be soo good for her!!!!!

We are all just happy to be together and enjoying life!!!!!

Thank you all so much for your thoughts and prayers!!! My little fighter is proof that they work!!!!!!!

Please continue to keep Kamy and her family in your prayers.. I havent heard from them lately. I hope they are all doing ok...

Dont forget little pink princess Katie Crosby.. She is back in vandy.. Having problems related to transplant.. Hoping she gets to come home soon!!!!!!

visit her at www.caringbridge.org/tn/katiecrosby

love
rhonda

Friday, July 15, 2005 4:13 PM CDT

Hi all, things are still good around here.. Just blessed more and more each day..

This little girl is a miracle to behold.. and I get to witness it everday...

I just want to thank God for giving me the ability to fight through my pain and fear and take in the beauty that is right in front of me..

We are a blessed family.. We have struggled. We have cried. We have grieved. But we are together.. We are getting stronger everyday.

Thank you all so much for your thoughts and prayers..they mean so much to us...

please help me in celebrating one more clean scan for our hero Josh Powell!!!!! 39 months and counting!!!!!!! take a minute and visit him and sign his guestbook.. www.caringbridge.org/page/josh

Go Josh !!!!!! Keep kicking cancers butt!!!!!!!!!

Dont forget to continue your prayers for little Kamy and her family.. She is still holding her own.. They really need our prayers right now....

Continue your prayers for litte miss pink Katie Crosby.. and visit her if you get a chance.....

www.caringbridge.org/tn/katiecrosby

love
rhonda

Monday, July 11, 2005 11:19 PM CDT

Hi all, things are going really good here... Better than good.. Sydney is a totally changed kid... Shes finally that little girl that was trapped for so long by this awful disease....

She puts it better than i ever could "I'M FREE" !!!!!!!! Thats what she says now... I am soo thankful and just amazed at the changes in my sweet little girl.. Im also just sad.. I always knew and said that something was wrong with her.. Its just that you adjust.. Seeing her now... Well, it just brings all that back.. It hits you over and over again how very long and how very sick that baby was..

She spent a good deal of her life not even being able to walk, and then when she did it was devestating.. She was a train wreck.. falling non stop... now she is "FREE"....

It is a beautiful thing to witness though.. seeing that sweet little child get her life back... and not just getting it, grabbing it and running with it...

Thank you God for letting this baby finally see what its like to be a kid... For letting her be "FREE"...........

Thank you all soo much for your thoughts and prayers...

Please keep Josh Powell in your thoughts this week.. He is going in for his scans.. I just know they will be perfect.. He is our hero!!!!!! Go Josh!!!! Keep kicking cancers butt!!!!!!!!!!! visit him at www.caringbridge.org/page/josh

And please dont forget little Kamy.. They really need them right now to help them stay strong... Kamy is a beautiful little princess!!!!!!!

And dont forget our little friend from knoxville miss pink herself Katie Crosby... www.caringbridge.org/tn/katiecrosby
she is in nashville seeing Dr. Frangoul.. She is doing well, but is having some problems with throwing up, probably related to her transplant. pray that that gets easier for. she is a doll......

love
rhonda

Thursday, July 7, 2005 1:31 AM CDT

Hi all, we had a great weekend.. It was my birthday and we went to my parents house in ohio.. They always have a big cookout on the 4th and all the family comes.

We all had a blast.. It just felt soo good to feel normal..It was the first time in a year that the girls had gotten to see their cousins..

We had water balloon fights as you can see from the pictures. The girls really loved that.. Sydney is such a little lady. She wouldnt throw the balloons at anybody, she just ever so gently threw them and then danced for herself...ha ha The girls got to roast marshmallows and make smores.. It just felt good.. Getting to see them be like normal kids..It did us all good. This has not only been a hard year for us, but for our entire family who had to go through it too, but 6 hours away..

These are all pictures of my family that was there.. My twin brother couldnt be there and that was sad because it was our birthday but most everybody else local was and it was great!!!!

Syd is still doing great!!! Still has no brovie!!!! whooo hoooo !!!!!!! And is still taking her pills like a good girl.. It just gets easier and easier.. She is such a big girl.. The skin problem is working itself out too thanks to vaseline...

Thank you all so much for your thoughts and prayers. I dont know how we would have survived without our friends and family this past year.. Those prayers are surely working!!!! My baby is cancer free!!!!! whooo hoooo
I just love saying that!!!!!!

love
rhonda

Friday, July 1, 2005 12:13 AM CDT

Hi all, Things are going great here!!!!! Sydney got her broviac out yesterday!!!!!!!!! No more brovie, no more brovie!!!!!!!!!!!! She is sooo happy!!!!!!!!

Things went really good...She had to go up into surgery to have it done, but it was pretty quick... She just has a little bandage now !!!!!! No tubes sticking out!!!!!

It is a little weird to not be doing flushes and dressing changes and checking her caps and making sure they are clamped and all that.... I keep raising her shirt like I have done a thousand times since last august just checking on it, but it isnt there!!!! lol

The pill taking is still going really good.. Still thanks to Colleen from Australia!!!!!!! The acutane is already having an affect on her skin though.... her face from her nose up is red and she has dry patches beside her nose.. I can only imagine what this will do to her at the end of 6 months..

Still pretty minor stuff compared to what she has already been through....

All in all we are doing pretty good.. just happy to be home and well!!!!!!!!!

Thank you all so much for your thoughts and prayers. And most of all, thank God, for without him we are nothing!!!!!!

Please continue to pray for little Kamy and her family. Pray that they have a great time at disney and Kamy stays well during their trip...

love
rhonda

Tuesday, June 28, 2005 10:06 AM CDT

Hi all, Things went soo much better in the pill taking dept. this morning!!!!!!! The honey worked wonders!!!!!!! I would love for her to just pop the pill in her mouth and just swallow it, but until she does this works great!!!!!!

I just covered it in honey like Colleen from Australia said and put it in the back of her throat and it just slid right down!!!!!!!! I was sooo happy !!!!! The second one went down just as easy!!!!!! Thank you soo much Colleen!!!!!! WE all felt soo much better!!!!!!!!

I tell ya, I was getting a wee bit worried about this whole acutane thing.... I know she really needs to take it and it was stressing me out a little bit afraid that we wouldnt be able to get it down her.......

Yeah !!!!!!!!!!!!!!!!!!! Smoothe as honey !!!!!!!!!! lol lol lol

Thank you all so much for your thoughts and prayers and please continue to pray for little Kamy and her family.. They should be on their way to disney by now..

love
rhonda

ps. the new pic is at clinic last week.. Sydney wouldnt leave the house until i sprayed her hair pink...The wee one just loves pink with a passion!!!!! It makes her soo happy!!! lol it was kinda cute!!!!! lol

Monday, June 27, 2005 10:13 PM CDT

Hi all, Met with the surgeon today.. Sydney gets her broviac out thursday!!!!! She is soooo excited!!!! She said "no more brovie forever".. its soo pitiful!!!!!!

As for the pill taking....well........lets just say its not going so well...... im just not so sure what will work with this little sprout.. We have really tried everything that we can think of and then some.. have actually wasted 2 pills because she threw up.... She has always had problems with her tongue.. She was getting ot, pt and speech before being diagnosed.... I think it was a fluke that the first one went down this morning.. we werent so lucky with the second.. it went down, but it wasnt pretty..... and it was pretty deflated... this evening was pure torture.... she threw up too so im not so sure how much she even got down her.....

im heading off to kroger to buy some honey and tic tacs and hopefully we can solve this little dilema tomorrow.. we tried yogurt, applesauce and anything else you can think of.. she just holds it in her mouth and then throws up..... Shes one tough cookie this one, but she hasnt learned yet that we are tougher!!!! ha ha atleast I think I am!!!!!!!!!

thanks for the advice ladies. i am going to try them.. if anybody else has any let me know.. im desperate!!!!!!!!!

thank you all so much for your thoughts and prayers.. and please continue to pray for little Kamy and her family.. Tomorrow they are leaving for Disney.. I hope little princess has a wonderful time!!!!!!!

love
rhonda

Sunday, June 26, 2005 8:05 PM CDT

Hi all, Things are still doing good... We met my best friend from Ky half way today and im keeping 2 of her kids for a week to play with the girls.. They are soooo excited!!!!!!! We just got home and Sydney and Baillie are holed up in their room with Morgan and Dale is in the playroom playing drums!!!!!! It is soo nice to have a houseful of kids.... I love the sound of kids playing and being happy !!!!!!!

Ok, all you nurses that check this website, and I know theres a few. I need some help.. I have some ideas but im starting to get a little worried !!! Sydney starts acutane tomorrow.. Its 2 pills twice a day.. 4 pills a day!!!!!! ok, ummmmmmmm the problem is, she hasnt ever swallowed a pill in her life!!!!!!!!!! She has to be on this for 6 months !!!!!!!!!!!!! Any ideas???? Im sure we will work it out eventually.....lol im just a little worried about ya know....ummm tomorrow and the next day...and ummmmm the day after that....and, well....... all the days that make up 6 months !!!!!! Just wondering if any of you gals have any tricks of the trade to share..... would reallly love it!!!!!!!!

Wish us luck for tomorrow.. We meet the surgeon.. Hopefully his schedule isnt too full and he can take out her line sometime next week!!!!! she will be sooo happy !!!!!!!

Thank you all for your thoughts and prayers.. And please continue to pray for little Kamy and her family... I got an email from her today.. They are heading to disney in 2 days.. Kamy is really excited and doing good right now... Her mom sent me some pics and she looks really good...Its just going to be a rough road ahead for them.. Kamy has been running around the house in her snow white dress.. she is soo excited.. I hope she has a wonderful time.. I will try and post those pics on the picture page when i get a chance...

love
rhonda

Friday, June 24, 2005 3:47 PM CDT

Hi all,

Things are going good here.. Went to clinic today. Found out that she didn't get randomized to the antibody study. That means that she will just be on the acutane for 6 months and then she is done.. I worried and worried about it but it wasnt in our hands...

We meet with the surgeon monday at 3 to set up a time to take out her central line!!!! She is sooo excited!!!!!! She sooo wants to take a bath without all we have to do to get her ready!!!! She just hates all the stuff i have to put on her to cover her line.. And then only get to bathe in a couple of inches of water!!!!!! That will be soo great!!!!!!!!

I still worry.. With all the advancements that have been made with childhood cancer, neuroblastoma still has a low survival rate.. The reason is the relapse is soo high.. but, like Dr. Malik said today, we can't treat her forever.. There has to be a stopping point somewhere...

I guess that is just going to be hard for me.. I know how to fight.. I dont know how to sit and wait.. The acutane is part of her treatment though and it has proven to help neuroblastoma from coming back..

I guess the whole thing is, we dont know.. none of us.... none of us are guaranteed a tomorrow.. I just have to make the best of today...

That is exactly what I am trying to do.. Looking back at how devastatingly sick she was when she first got diagnosed to now is amazing... She is a totally different kid.. I feel like I have received this huge gift. Now it's my turn to repay that gift by being thankful for it and being happy..

I know we Dudley girls are crazy, but we are happy !!!!! Happy to be alive!!!!!!!

Please dont forget little Kamy and her family in your prayers as there is nothing left they can do for her.. She is one special little princess !!!!!!!

Thank you all for your thoughts and prayers!!

And thank you God, for without him we are nothing !!!!!

love

rhonda

Tuesday, June 21, 2005 10:36 PM CDT

Hi all, Things are going good here.. Not much going on.. Just hanging out and enjoying life.. Enjoying seeing my baby feel soo good.... Having no cancer in your body sure makes a kid feel good!!!! ha ha

Her and Baillie have played non stop.. They are soo cute.. They are just glad to be alive and glad to have each other..

Havent heard anything about the study yet, so not sure whats going to happen with her treatment.. I'm sure we'll know soon enough....

Thank you all so much for all your thoughts and prayers and please continue to pray for little Kamy and her family.

love
rhonda

Sunday, June 19, 2005 5:55 PM CDT

Life is grand !!!!!!!!!!!!!!

Friday, June 17, 2005 9:57 PM CDT

Hi all, I have a tale of sorts today.. I'm calling it "The little girl and the muffin." You see, I have this theory that every day that we live can be a learning experience no matter how trivial it may seem. This was mine for today.

Today was to be the last day of scans for Sydney. The last day of a month of being sedated and not being able to eat until late in the afternoon or evening.. To a child like Sydney who lives to eat, this is a challenge. Well, she has done so well this whole time about not eating all day. I have been so proud of her.. I just pack her lots of her favorites to eat afterwards.

Well, last night I made muffins in preperation for today. I tell ya, Sydney really wanted those muffins.. Baillie has to eat too, so its a challenge to try and hide Baillie so she can eat and not let Sydney see.

At one point in the morning I saw Sydney carrying around this muffin.. My first thought is, oh no she cant have that. I told her that she couldnt eat that yet and that I was sorry, but she could have it after her scan.. She said ok, after my scan.. She didnt get mad.. She didnt cry... She was just soo happy that she could have it AFTER the scan.. She kept carrying it around though.. All day.. That poor little blueberry muffin..

Then I saw the most pitiful thing of all.. She took her finger and put it in her mouth and then put it on the muffin and then put the finger back in her mouth... just to get a taste of that poor little muffin.. she did this several times, just carrying around this little blueberry muffin until I thought I would cry..

Finally, she let me put it and another in a plastic baggie. She carried those two little blueberry muffins in that baggie the rest of the afternoon until I put them in her little dora bag along with a moon pie and a juice box and some fruit snacks for "after my scan."

Then she carried that dora bag on her little shoulder all the way to the van and in the hospital, happily saying the whole time over and over again "after my scan."

Its amazing to me how much I learned today from my little 4 year old child and a blueberry muffin..

She never cried. She never pouted.. She never once said why can sissy eat and not me.. She was just so utterly grateful and happy that she COULD have that blueberry muffin "after my scan."

Thank you God for giving me 2 beautiful daughters that I can learn from on a daily basis!!!!

Thank you all for your thoughts and prayers.. And please continue to keep little Kamy and her family in your thoughts and prayers...

love to you all
rhonda

Thursday, June 16, 2005 6:57 PM CDT

Hi all, Things are well here in the dudley household... The week and all these tests are coming to an end, and again it seems we've survived.....lol

Glad when things settle down though.. getting put to sleep 5 days a week for a month has got to be hard on a wee one.... Shes done really good, but is grumpier when she wakes up....

We are all happy and well, and just hanging in there... tomorrow is our last scan so that is cool.. i dont know what next week will bring but i do know it wont be a week of scans !!!!! ha ha

Im just really proud of her... she is sooo tough... I guess having 2 really stubborn parents have paid off !!!!!!!!

Thank you all for your thoughts and prayers and please remember to keep little kamy and her family in your prayers.

love
rhonda

Tuesday, June 14, 2005 11:37 AM CDT

Hi all,

The picture on this page is of Sydney and a little girl named Kamy. They were in transplant together.. They only got to see each other as they passed by in the halls but they soo loved each other...

I just found out today from Kamys mom that she has relapsed again..

Please say a prayer for this family as they need it so bad right now.. Her parents are David and Stephanie Boyd and she has a big brother Corbin. It was his bone marrow that she got in transplant.. A really nice family.

please check on the picture page and on her angel fire picture page.. there is a link at bottom of page.. i will put more pictures of syd and kamy.... they were soo sweet !!!!!

Thank you all for your thoughts and prayers !!!

love
rhonda

Saturday, June 11, 2005 6:53 PM CDT

hey all, guess who's home!!!!!!!! we are soo happy to be home !!!!!!! sweet sweet knoxville !!!!!!!!! Sydney did so good with radiation !!!! she is just sooo wonderful !!!!!!! she did get sick last night though.. guess thats not too bad since that was the first time in 3 weeks that she has gotten sick.....

we have scans all next week for that study so we'll be plenty busy, but we'll be home!!!!!!!!!!!!!!! whooo hooo !!!!!!!

im working on getting pictures up on the angelfire page so check back. hopefully ill have them up in the next couple of days.. i have a few already on the end of page 4 and 5.. mike did something to the computer while we were gone and i cant find alot of pics that i took at transplant.... ill get them up when i do...lol

for all of you that check this website, dont forget to sign her guestbook from time to time.. she just loves for me to read her what everybody says.....

im gonna hop off now and get my sweeties to bed... oh, and baillie was sooo good in nashville.. she is the best child !!!! she helps me soo much with sydney.. me and her had alot of bonding time that was much needed while we waited on sydney to get out of radiation.. i had coffee and she had hot chocolate.... it was fun..... im glad that we got to spend alot of time together like that.. we hadnt had that in a while.....

thank you all for your thoughts and prayers !!!!!!!! we love you all !!!!!

rhonda

Friday, June 3, 2005 5:35 PM CDT

Hi all !!!!!!! Home for the weekend!!!!! Sydney is doing awesome!!!!!!!! I tell ya, she is the toughest kid I know!!!!!! You would never even know anything was being done to her!!!!!

Ever heard of a kid gaining weight while getting radiation?? ha ha thats my girl !!!!!!!!

Shes a kid on a mission. And that mission is to live every day to the fullest!!!!! She is a new person. A little girl I had never gotten to see before... A little girl who is now living with no pain.. It is one of the most amazing transformations I have ever witnessed in my entire life.. I will never forget it for as long as i live..

I do have some moments when my heart breaks in two seeing her talk, run and play like a kid her age should... Im laughing because it is soo amazing and then crying because of all that she has missed in her life.. This was the kid she was supposed to be... The kid she never got a chance to be.. Im sad over the life that she lost, but ecstatic over the life she now has.. and even more for what the future might hold for this special little girl..

I am also soo thankful for all the people who have played a part in helping this little girl get her life.. Its like a huge cloud has been lifted off of this baby, and it is a beautiful thing to witness...

Im heading off now to spend time with hubby before he goes to work. Just wanted to do a quick update.... The Dudley girls are hanging in there !!!!!!!! Just one more week to go then knoxville here we come!!!!!!

Thank you all for your thoughts and prayers !!!!!!!!!!!

And most of all, Thank God !!!! For without him we are nothing !!!!!!!!!!!

rhonda

Sunday, May 22, 2005 10:44 AM CDT

Hi all.. Look out Vandy here we come!!!!!! Me and the girls are heading out in a few hours.. Just wanted to do a quick update before i go... We cant get a suite this time at the ronald mcdonald house so i wont have access to a computer but i will update when i come home for the weekend.... we get to stay until monday because of the holiday.. I guess they arent even going to start actual radiation until thursday.. I hate getting started that late but i guess we have stuff to do before then.. I dont know alot about radiation.. Guess ill be finding out....... I think she said we should be done by june 16th.. not sure though.. I do get to come home on the weekends so that is cool.. Me and the girls are going to have fun... We'll just go to the park and play for a few weeks.... Thank you all for your thoughts and prayers... WE love you all!!!!!!!

HEY JUST TALKED TO DR. MALIK...... THE MIBG RESULTS ARE BACK!!!!!!!! PERFECTLY NORMAL!!!!! NOTHING!!!!!!!!! NADA!!!!!!! THIS MEANS THAT MY BABY HAS ABSOLUTELY NO CANCER IN HER WHOLE BODY!!!!!!!!!!!!! SHE IS NOW CANCER FREE!!!!!!!!!!!! SOOOOOO WONDERFUL!!!!!!!!! YES YOU ARE READING THIS RIGHT.. LITTEL WEENA BIRD IS NOW CANCER FREE!!!!!!!!!!!!!!!!!!!!!!!!!!! THANK YOU GOD !!!!!!!!!!!!

rhonda

Thursday, May 19, 2005 4:02 PM CDT

Hi all, doing good... Got my days mixed up i guess... She had her 2 hour scan today and is having the other one tomorrow.. We leave for vandy sunday... Going to start actual radiation that thursday.. then we get to come home for the long weekend and be back by tuesday of that following week.. i think she said we would be through by june 16th.... be glad to get it done..... guess her line infection is clearing up.. We got out of the hospital on firday.. just been busy..... sorry havent updated... we've been house hunting so we are really just trying to kill ourselves.. ha ha good timing huh?? ha ha anyway things are ok.. things will start to slow down soon im sure....ha ha

Hey miss Kamy Kam !!!!! We miss you sweet princess!!!! maybe we'll see ya around in vandy!!!!!!!

Thanks for all your thoughts and prayers!!!!!

love
rhonda

Wednesday, May 11, 2005 9:49 PM CDT

HI all.... Seems that we've made a little pit stop to the ole childrens hospital...

We've been in since monday. She got really sick in clinic and then we got admitted. Looks like an infection of sorts. The reason we're still there is because they dont know what kind yet. Until they do they have her on 3 different antibiotics. We cant go home on 3 iv antibiotics.

She's doing great though. No fever anymore. Just waiting it out.

Im home tonight to spend some time with Baillie Boo.

Dr. said today that we could be in for several or more days yet. Ill update again when we get home..

Thanks for all your thoughts and prayers....

love

rhonda

Friday, May 6, 2005 12:55 AM CDT

Hi all!!!!!! Good news in the Dudley household!!!! Clean bone marrow!!!!!! Clean Clean!!!!! I mean really Clean!!!!!! Squeaky Clean!!!!!!!!!! Did I say Clean?? I mean Clean!!!!!!!

Whooo Hooo!!!!!! Gooooo My little princess!!!!!!!

I feel soo bloomin good right now!!!!!!!

We have the big MIBG scans coming up on the 16th,17th and 18th. It is a really big scan for 3 days. It will show anything that might be there that the bone scan didnt show.. I feel pretty ok about it though..

Dr. Malik said he talked to Dr. Frangoul in nashville and he wants us to be in nashville for radiation that week of the mibg. Be good to get that over with...

Just wanted to spread the cheer!!!!!! MY baby is gonna beat this thing!!!!!!

Thanks for all your thoughts and prayers!!!!!

love

rhonda

Monday, May 2, 2005 6:03 PM CDT

Hi all,

Went to clinic today.. Everything is still looking great... Counts are wonderful !!! WE go back on Wednesday for bone marrow and then thursday for clinic....

Just praying for good clean scans on that bone marrow!!!! He did say today that he was still worried about her....Just got to leave it in Gods hands.. Im not letting myself get that tore up again...It just doesnt do anything but make me miserable..

I think they will be good.. I just feel better about her now.. Fear is soo powerful....It took ahold of me and was attempting to smother me...It was awful!!!! Its ok to be scared... Just have to stay sane.. I didnt feel so sane at times.. I Just knew she had relapsed... Now, i feel like she is ok..

Say a little prayer for our little one on wednesday that the bone marrow is clean.. atleast no new cancer... Oh, and its not that important.. and im not sure we should pray about it, but Sydney really thinks her hair is gonna come back in pink..... ummmmm im not a rocket scientist or anything but it sure dont look pink to me... my hope is to maybe find some non toxic hair dye????? pink???? lol ha ha any suggestions????? ha ha hopefully she'll just be happy with the brown it really is and wear a pretty pink hair bow!!!!!!!! ha ha ha ha

Thanks for all your thoughts and prayers!!

Love to you all!!!

Rhonda

Friday, April 29, 2005 3:14 PM CDT

Hi all !!!!!!! Clean Scans!!!!!!! Clean Scans !!!!!!!!! Did i say Clean Scans?????? ummmmmm Clean Scans!!!!!!! Nothing, Nada Zip !!!!!!! Not one spot of Cancer anywhere in her bones!!!!!!!

Yeah Sydney !!!!!!!!!! Mommys little Angel!!!!!!!!!!!!! I tell ya, I am soooo happy !!!! Mommy was having a wee bit of a stress out over it......

Sometimes right in the middle of the worst times of your life, you see the most miracles!!!!!!!! Thank God !!!!!!!!!

Go Sydney !!!!!!!!!!

love to you all

rhonda

Wednesday, April 27, 2005 9:46 AM CDT

Happy Birthday Baillie !!!!!!!!!! Cant believe my little redheaded sprout is 8 today!!!!!!!! Seems like yesterday that i was welcoming her into the world!!!!!!
We love you big sis!!!!!

Tuesday, April 26, 2005 9:47 PM CDT

Sydney is having a bone scan done on thursday. Just wanted to ask that you all say a prayer for her on that day that these scans are clean....

Thanks for all your thoughts and prayers.....

love

rhonda

Sunday, April 24, 2005 10:52 AM CDT

Hi all, Sorry been so long since last update.. I know that there are alot of you that check this thing daily to see what is up.

This is like my 5th attempt in as many days. I just dont want to make this a weepy place.. I guess ive just had writers block. You know that knot you get in your throat sometimes? I guess it affects typing skills too...

Sydney has just had some rough nights. She has been crying really bad all night for several days now.. She was pointing to her legs at one point. She seems to be ok in the daytime though. She does act like something is wrong at times during the day.

I got so worried that I called Dr. Malik yesterday morning. He said that he thinks its possibly growing pains. He doesnt think that there is anything major happening in her bone marrow because her counts are good which means that her bone marrow is recovering. There could possibly be new bone lesions though. I dont think he thinks so, but he also cant rule it out.

Maybe im just being paranoid. Its just hard to see her cry and have no idea what could be happening in her body. She isnt due for scans till day +50 or so and it is only day +39 now. He did say that we could go ahead and do scans this week coming just to see.

We go to clinic in the morning. We are going to talk about whether or not to try and enter her in this antibody study and I guess we'll find out what he wants to do about those scans.

I guess I just have to stop and remember all that has just happened to her little body and the affects that it could still be having on her.. I really hope that is all it is..

Please say a prayer for our little Sydney and this family. That we may somehow find the strength and courage to face whatever it is that is put before us..

Thanks for all your thoughts and prayers.. We love you all !!!!

rhonda

Thursday, April 21, 2005 2:29 AM CDT

Hi all, we are well here in the dudley household...Just enjoying being home and these beautiful days!!!!

Not much news to tell. things are pretty much the same.. Sydney is getting stronger everyday. Still not eating a whole lot, but that will come....

Going to clinic in the morning and will maybe hear more about when we'll be heading back to nashville for radiation...

Supposed to have bone marrow and other scans done soon too.. maybe hear when those will be.....

All in all things are great!! The girls are sooo happy to be together!!!!!! They are glued at the hip!!!!!! Its soo sweet!!! They just really love each other soo much!!!!!

Ill post more when i hear more..

Thank you all soo much for all your thoughts and prayers!!!!! They have meant soo much to us!!!

love

rhonda

Wednesday, April 13, 2005 8:45 PM CDT

SO LONG NASHVILLE !!!!!!!!!!!!!!!!!!!!!!

HELLOOOOO KNOXVILLE !!!!!!!!!!!!!!!!!!!!!

YIPPIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

YEAH YEAH, I KNOW I DIDNT SAY FOR SURE I WAS COMING HOME.......YOU JUST NEVER KNOW WHAT MOMMY MIGHT DO TO DELAY THINGS!!!!!!!! HA HA

JUST WANTED TO WAIT AND MAKE SURE!!!!!!!!!!!

MADE IT HOME ABOUT 5 KNOXVILLE TIME!!!!!!!! REALLY GOOD TIMING ON MY PART!!!! RUSH HOUR!!!!!!! STILL WASNT TOO BAD!!!!!!!! NOT NEAR AS BUSY AS NASHVILLE!!!!!!!!

GOT TO GO TO CLINIC IN THE MORNING AT 10.... BAILLIE AND SYDNEY WERE SOO HAPPY TO SEE EACH OTHER!!!! IT WAS SOOO SWEET!!!!!!! MIKE AND BAILLIE HAD LIKE 50 BALLOONS ALL OVER THE HOUSE AND OUTSIDE WAITING ON US...... A BUNCH OF THEM WERE LINED UP IN THE LIVING ROOM SAYING WELCOME HOME WEENA ON THEM......IT WAS SWEET!!!!!!!!!! AS SOON AS WE DROVE IN THE DRIVEWAY WE SAW ALL THE BALLOONS ON MIKES CAR AND ON THE MAILBOX... SHE WAS SOOO EXCITED!!!!!!

THE GIRLS ARE SLEEPING IN BAILLIES ROOM TONIGHT.. PROBABLY EVERY OTHER NIGHT TOO!!!!! THEY LOVE SLEEPING TOGETHER..... THEY DID HAVE A WEE BIT OF A SPAT OVER WHO GOT TO SLEEP IN THE BED AND WHO WOULD SLEEP IN THE POP UP TRUNDLE....SYDNEY GOT THE TRUNDLE AND HER CHOICE OF MOVIE.. TOMORROW IS BAILLIES TURN.......

THEY HAVE PLAYED SOOO HARD!!!! I SWEAR I NEVER SAW THEM...... THEY WENT STRAIGHT TO THEIR ROOMS AND JUST WENT BACK AND FORTH FROM ONE TO THE OTHER PLAYING.....IT WAS CUTE...... BAILLIE HAS GROWN A FOOT LET ME TELL YA!!!!!! SHE LOOKS LIKE SHES GONNA TURN 12 INSTEAD OF 8!!!!!!! WE'RE GONNA HAVE TO WATCH THAT ONE SOON!!!!!!! AND WITH SYDNEYS WINK............. HA HA GOOD THING MIKE IS ALREADY BALD!!!! HE HE

I FEEL SOOO HAPPY!!!!! JUST REALLY GOOD TO BE HOME....... EVEN FOR JUST A LITTLE WHILE........

PS....IM HAVING THE BEST CUP, OK POT OF COFFEE EVER!!!!!!!

WHOOO HOOOOOO

LOVE YOU ALL, THANKS SO MUCH FOR ALL YOUR THOUGHTS AND PRAYERS THROUGH ALL OF THIS!!!!!!!!!!!!

RHONDA

Tuesday, April 12, 2005 12:19 AM CDT

Ok, here's the scoop....Dr. Frangoul said there is no way she is getting radiation right now...That she wouldn't be ready for a month..

Seems that Radiation dr. got a little excited... Don't know what it is about us girls that do that to people....lol lol

I've decided to not say anything else.. You all can come to your own conclusions about what's going to happen next....lol he he he he

Any guesses???????

love to you all !!!!!!!!!!!!

rhonda

Monday, April 11, 2005 4:55 PM CDT

Hi all, know its been a few days.. Just didnt get the chance to update.....You know, my social life is soo busy I just couldnt make the time......lol yeah..huh lol

Sydney and I spent a quiet weekend her at the ronald mcdonald house....It was really pretty so she got to play outside.. She just loved that...

Things are pretty much the same.. I met with the radiation oncologist today. He wants to go ahead and start radiation now as opposed to waiting a few weeks like her protocal says..... He thinks it would better for her to do it now....

We go to clinic tomorrow and then wednesday go for ct scan.. His nurse said they would start radiation on the following monday.. 12 times... 2 1/2 weeks... She said we would be done on may 4th.. Im fine with it.. Keeps me from turning around and coming back....

He did say I would be able to come home on weekends.. Im not so sure though since hes doing it early... Guess we'll find out more in a few days... I would love to be able to come home on weekends..... Baillies birthday is on the 27 and if i could come home on the weekends then we could have her a small family party then..... So, im really hoping for that....

Well, gotta run. WE just got in.. Been out all bloody day!!!! lol I just wanted to update really quick because I hadnt in a few days... Ive already gotten a few calls checking on us!!!! lol

WE are fine.....Just lonely....atleast we can get all this done and not have to come back here for any big stays~!!!!! maybe we can have a good summer!!!!!!!

Love you all.....

Thanks for your thoughts and prayers@!!!!!!

rhonda

Thursday, April 7, 2005 2:07 PM CDT

Hi all, just got back from clinic......yeah, again!!!!!!!!!

Seems that mommy really did a number on sydney....Looks like something else is growing in that line now.. So far, she isnt sick yet so we dont have to get admitted.. Just hate that a mistake i made gave her some bug in her line...

Not so sure we're going home tuesday after all.. we may get a good week delay because of this.. Seems that mommy really loves nashville!!!!!!! ha ha Good thing i can somehow manage to find humor in thingss. Otherwise I think I would be insane!!!!! lol ok, maybe im already insane....lol maybe id just be more so....ha ha

Gonna go for now... love you all!!! thanks for your thoughts and prayers!!!!!

love

rhonda

Wednesday, April 6, 2005 2:39 PM CDT

Hi all, just got back from clinic......again!!!! ha ha

Wasnt supposed to go until friday, but Cassie called this morning and said that something did show up in her line and to come to clinic so they can start her on the iv antibiotic and do another culture...

She isnt acting sick, so hopefully they caught whatever it was...you know, mommy forgetting the cap!!!!!!! soooo bad sucks!!!!!!!!! Im having the worst mother of the year contest and im coming in first!!!!!!!!

She will have to go on iv antibiotic every 8 hours here. The home health care ladies are on the way.....again.....lol

Well I guess the rash crap from transplant decided to show up again today....The nurse asked me if she got benadryl before vancomicin and i told her that she took it at home and was fine and that they thought it was the vanc that she had the reaction to in hospital but decided it was these other 2 drugs instead and that she should be fine....well, guess mommy really is off.....lol she turned the nicest shade of bright red!!!!!!! so.........along came nursey and the benadryl!!!!!!!! and they slowed the rate down, so she is fine.. one of the doctors stopped me and said that it wasnt the same thing as in the hospital. that the vanc can do that when going too fast and she just needs the benadryl before....so.......guess i dont really suck too bad.....lol lol

Anyway, we are alive and well.....and rash free to boot!!!!!!!!! Gotta go back to clinic tomorrow for vanc levels and possibly platelets.. then again on friday......still hoping for that tuesday release.....but im not talking about that!!!!!!!!!!!!!!!!!

love you all

rhonda

Tuesday, April 5, 2005 3:07 PM CDT

Hi all, Happy days are here again!!!! do da do da !!!!!

Just got back from clinic. DR. Frangoul is a nut!!! ha ha He said maybe tuesday or wednesday for going to knoxville... whoo hoo

Thats all im saying about that...lol i jinx myself every time!!!!! I get soo excited and start doing the happy dance. then all of the sudden some crazy thing happens... so........im shutting up if you all can believe that one!!! ha ha ha

Its all good.. We'll get there soon enough!!

I did the dumbest thing ever this morning... Im soo worried about it... We got to clinic and i took sydney to the bathroom and she was saying no cap mommy, no cap....I finally turned around to see what she was talking about and one of her lines didnt have a cap on the end of it!!!!!!!!

My knees gave out.. I seriously bout hit the floor!!!!!!! I knew right then what I had done.. I guess when i took her off the tpn this morning that after i flushed the line i screwed the whole cap off with it.. It was 7am.. I guess I didnt realize what I had done....

DR. Frangoul was cool about it, but I tell ya the nurse bout had a heart attack!!!!! She was like, you know if that had been unclamped blood would have came out everywhere!!! no kidding huh?? lol

So........... they soaked it in bedadine and then flushed and took a culture.. hopefully she wont get an infection.. I would be soooo upset.. I mean, there are so many things that happen to her that we cant control.. but to be my fault!!!!!! I told Frangoul that i would shoot myself in the head if she got an infection.. ( joke for all those that dont know me) he told me to let them know first so they can put something down on the floor!!!!! ha ha He has my kind of humor!!!!!!!! love that man!!!!!

Guess we'll just have to wait it out and see what happens with the culture and ill buy that gun then... anybody got one cheap????/

thanks for your thoughts and prayers !!!!!!

love

rhonda

Monday, April 4, 2005 1:13 PM CDT

Hi all, Sorry I havent updated in a few.. Computers have been down here at the ronald mcdonald.

Things are actually going pretty good.. Sydney is pepping right along... We went to clinic this morning and didnt need any blood products..She goes back tomorrow though and may need platelets then...

Her white blood count has dropped again. I guess they say that is ok.. Otherwise everything is going as expected....

Her weight going into transplant was 36 pounds and now it is 41. that worried me some but Cassie said today that it was ok, that it was just the tpn....shes on it for 12 hours at night so i guess it is putting weight on her.. you ought to see her , shes a chubby little sprout!!!!! ha ha

Going to hop off for now.. We are going to the playground.. It seems to never be full so its cool that she can go out there and play....Cassie did say this morning that it was fine to do anything outside.. just watch out for really crowded parks and make sure to sunscreen... I told her not to worry... i mask her just to take her from our room to the car!!!!!! dont have to worry about me taking her around anybody!!!!!! i like hiss if anybody comes near us!!!!!! ha ha just cant be too careful!!!!!!

thanks to you all for your thoughts and prayers!!!!!!

love you all !!!

rhonda

Friday, April 1, 2005 6:25 PM CST

We're free !!!!!!!! WE're Free!!!!!!!!!! You just dont know what a relief that one is !!!!!!!!!!!!!!!!!!!

Not so much to be out of there...Dont get me wrong, that is way cool....Just that this one huge thing that we have been thinking about and dreading for 6 months is finally over......atleast the hospital stay part of it......ha ha

Cassie said that we'd be here for 2 to 3 weeks then we can go back to knoxville....She said we will have to stay here for that day +30 bone marrow test.. today is just day +17... so, we will be here for atleast the 2 weeks....

Thats ok though.. just good to be able to see outside!!!!!!! even though poor sydney hadnt seen outside in 24 days and it was raining when she finally got out!!!!!! She liked it though.. She said, its raining mommy and was just smiling!!!!!

She is feeling soo good!!!!! She came here and looked around and said " a refridgerator mommy" !!!!!!! ha ha she gets excited over the little things just like mommy!!!!!!!

She ate a big portion of an apple pie from mcdonalds and a part of a chicken nugget......she gave me no trouble taking her medicine when we got here either... I tried to tell them that....I know my kid........I knew she would do better when she was away from there.....Thats Sydney......ha ha She is one tough cookie!!!! I dont suspect she'll have to be on that tpn nutrition long either..... That baby aint gonna stay not eating for long!!!!!!!!!! She is just playing, and acting like my Sydney... You would never believe from looking at her right this very second that she had been hit by a truck!!!!!!! Im just happy to be alive today and i suspect Sydney is too!!!!!!!!!!!

Gonna go for now, the gal from home health is here

thanks for your thoughts and prayers

love
rhonda

Thursday, March 31, 2005 5:53 PM CST

Hey all, doing great here !!!!!!!!!! Go check out our link to pics on the angelfire website.. there is a link at the bottom of this page for all of you who dont know... there are some new pics that i just took of her .........she is too funny.......

not the best quality.. i can only use the webcam to put while im here because the computer here wont let me download my pics from my camera....i have some really good ones though to put on when we get home....

love you all

thanks for your thoughts and prayers !!!!

love

rhonda

Thursday, March 31, 2005 8:42 AM CST

Anybody want to make any wagers on when we are going home?????/ ha ha ha ha ha

Aint nothing but a bunch of teasers around here!!!!!!! ha ha

She had a lot better day yesterday. Took her meds by mouth and drank a good amount and ate a wee bit.. Those are the things that they have been wanting to see to release her to ronald mcdonald..

They are in there discussing "it" as we speak!!!! Lets just see how that one goes.. One gal says she would feel better about tomorrow so syd can have one more good day behind her, but some of the others say they dont like to release transplant kids on fridays...

So really I have no bloomin idea when we are leaving.. It could even be monday the way things are looking.....

What they dont know is monday is ok....lol just to know that I will go home in the near future is wonderful!!!!! Im just not telling them that!!!! ha ha ha I would really like to be out of here for the weekend though..

I cried and cried yesterday.. It was absolutely the most pitiful thing I have ever seen!!! They let Sydney walk to the end of the hall and her and Baillie got to see each other through a tiny hole in the door.. it was soooooo sad!!!!!!!!!!! I just stood there and cried my eyes out!!!!! We really picked a horrible time to come.. not that we had much choice....lol They have this thing going on up here. We call it the shunning.....ha ha The purpose of the mylosuppression unit is so the kids can run around and play and not have to sit in the room all the time... Well............ I guess they had some kids come down with this vre virus thing and they have to have special precautions because of it.. nobody walks in these doors without gowns and gloves.. I cant step one little toe out the door without a gown and hand washing. which is cool, who wants there kid to get sick after they come to the hospital.. But.......they havent had a positive in forever!!!!! These precautions are gonna go on for months and months.. I had just had this image in my head of her running around and makin friends and playing in the playroom.. They dont get to do that.. The ONLY time they get to leave this room is when the physical therapist comes and takes them for a walk around the hall once a day....Thats why I really want to go more than anything.. I want her to play and have fun!!!!!!! She had so much fun in those few minutes yesterday with her sissy!!!!! And this little girl Cammy... When they take their walks, they stop at each others door and say hi and blow kisses.. it is sooo sweet!!!!!!!! they love each other even though they have never gotten to play!!!!!

Well, gonna go before i get myself all sad.. I knew this was gonna be tough.... This journey is almost over!!!!! Just one more step to my sweet baby being cancer free!!!!!! whooo hoooo

Oh, and want to give a really big shout out to sweet nurse Heather!!!! Our little patient advocate!!!!! She believed that Sydney deserved the chance to try and take those meds by mouth!!!!!!!!! And she did do it!!!! Thanks Heater for giving her that chance!!!!!!!

And, to the Powell family... You all are pretty darn special!!!!!! Josh you are sooo amazing!!!!!!!! Every time I start to get just a wee bit down I get something from them and see that sweet face and know that we can survive this!!!!!! Josh, you are my hero!!!!!!! Keep smiling!!!!!! We love you!!!!! Please go visit his site.... In it you will find a true miracle!!!!!!! www.caringbridge.org/page/josh

Thank you all for your thoughts and prayers!!!!!!!!!

love
rhonda

Wednesday, March 30, 2005 1:09 AM CST

Hi all, good day today.. Im here at Ronald Mcdonald House with Baillie.. Mike came down to bring me back the suitcases that he took back to knoxville with him and sydneys carseat....yeah i dont know why exactly he took them home either!!!! ha ha

Kind of a good thing though because I get to spend some time with Baillie....She has grown soo much!!!!! Its been almost a months since ive laid eyes on here except over the computer!!!!!! She is sooo tall!!!!! Goodness I missed her!!!!!!!!!

This rmh is pretty cool... It also has a computer so i can update.. It has a kitchen so i can cook and wont have to get her out if her counts are still low....not that i ever take her out anyway....lol not to restaurants anyway!!! not for a while yet!!!!!

They are talking like its atleast going to be before the end of the week.. just have to see how she does taking the meds.. Shes still not eating but shes going to leave on the tpn so I guess its not that huge of an issue.. She will eventually eat!!!!

Cassie, the nurse practioner said that they dont like to discharge on fridays, so hopefully it will be thursday!!!!! Cant wait!!!!!!!

Gonna go for now.. Im going to take a long bath!!! I havent taken a shower without the bathroom and main room door open in almost a month.... It will be nice to just sit and not hop out every 3 seconds to make sure she is ok......ha ha

I know I know im paranoid!!!! I am really serious about the whole door thing.. I tell the nurses that im going to take a shower and leave the doors open so i can hear and then i hop out over and over and peak around the door to see if shes ok even if shes sleeping......so, lets just say that I dont get long showers!!!!!!

Ill update tomorrow or the next and let you all know when we are leaving!!!!!!!

Go Sydney Go Sydney

Thanks for your thoughts and prayers!!!!!

love

rhonda

Monday, March 28, 2005 2:47 PM CST

Well looks like life is good again!!!!!!!!! Seems that Sydney wont be kept down for long!!!!!!!

I guess all the blood clots last night may have been from all the nose bleeds she had yesterday from low platelets.. She was swallowing all that blood and it just came up... Not to be gross but thats what happened.....

Looks like the fever might have been from all the platelets she got yesterday....It is gone now...They are going to keep her for 48 hours to make sure its not an infection coming and maybe we can go to ronald mcdonald house by wednesday?????

Nothing for sure..... goodness knows you cant say anything for SURE around these parts!!!!!!!!

She went walking with Sydne without the Y.... ha ha She ran through the halls and walked on tippy toes and was sooo happy.. She blew kisses at Cammy.... So good to see all that life in her... Last night was one rough night ill just tell ya.... i feel soo much better about things today...

I'll tell ya when I really knew that she was gonna be all right... Remember we hadnt slept last night.. Well, mommy hadnt anyway.... so, I got up in the bed with her this morning and we took a nap... I have this vague memory of all these drs standing at the foot of her bed talking to me and I really didnt care i was so tired and she was so cuddly!!! I know i was seriously mooning this one doc that i had never seen before.. I think he was a resident or something.. I just kept thinking that my pants were riding pretty low.....lol thats how tired i was, i still didnt care!!!!!!!! ha ha ha ha ha guess he got a show!!!!!!

Well, anyway we slept for a long time and I woke up and looked beside me and Sydney was laying there with the prettiest grin on her face you ever saw.. It had blood crusted all over it and blood all over her nose and gown but it was the most beautiful thing I had ever seen!!!!! Anyway, She was smiling at me and rubbing my arm!!!! She just kept doing it!!!!!! She just lay there while I had been in and out of sleep and was rubbing my arm!!!!! I just started boo hooing !!!!!!!! I knew right then that I had gotten my baby back.. I mean really gotten her back.. Like it finally let go of its hold on her !!!!!!!!!

She has danced and sang and did the turkey call!!!!!!! She has hollered for Yo all day!!! Yo is this crazy nurse that also likes to moon people!!!! ha ha thats probably why she loves her so much!!!!! ha ha She drank some coke and ate some tootsie rolls!!!!!!! She was grossing everyone that passed her room out and loved every second of it!!!!! She is addicted to this suction thing... She is too much of a princess to spit so she just sucks it out.. well...... she was having a snotty mixed with blood nose and was suctioning it out and then putting it back in her mouth and suctioning it!!!!! it was soooo funny!!!!!!! she would just put it up to her nose and grin!!!!!!! yo was gagging and she was just laughing!!!!!!!!

Sydney has really joined the land of the living!!!!!!!

I think alot of people, myself included have really been praying for this little one today!!!!!!!!!

Thank you all for your thoughts and prayers!!!!! We love you all!!!!!!!!!!!

SHES ALIVE!!!!!!!!!!!!

love,

rhonda

Monday, March 28, 2005 5:46 AM CST

Hi all, pretty rough night...if you havent noticed it is now almost 6am. I havent went to bed yet... figured why bother, its already so late....

Not so sure now on that tuesday release. Im really not stressed over that though. Its more her health than anything...

Poor thing has spit up massive blood clots and had nose bleeds half the night...guess its still that mucositis.. If after this I ever hear the term mucositis again i seriously think ill shoot myself!!!!!!!

Now she is running a temp again too... It had gone away as soon as her counts came up and now she has started again.. she drew some cultures but wont get them back for a couple of days.....

I just feel sooo sorry for her!!!!!! I just wanted this to be over for her soo bad!!!!!!! I know it will be soon, but its still so hard to see her like this......

Her white blood count is still good so maybe it will start healing that mucositis......

Thank you all for your thoughts and prayers... Ill post when I find out anything new......

love
rhonda

Sunday, March 27, 2005 3:02 AM CST

Hi all, its 3am saturday and i just had to update really fast and tell you all her white blood count!!!!!

It is 7.2 !!!!!!!!!!!!!! Im pretty impressed I have to tell ya !!!!!!!!!!! She is just way too cool !!!!!!!!! its not even really day 12 yet !!!! almost but not quite !!!!!!!!!!!

It went from 0.1 to 0.4 to 0.8 to 1.4 then a whopping 3.8 and now 7.2 !!!!!!!!!!! that is pretty wonderful!!!!!!!!!

I think im going to bed now.. I was kinda waiting up to see what that cbc was...

Im really starting to think that we may actually see ronald mcdonald house early next week !!!!!!!!!!

Happy Easter to you all !!!!!! I feel soo blessed !!!!!!! They call this stem cell transplant a "RESCUE". Well, it rescued more than her body!!!! It has helped rescue me!!!!!!!!

This was a horrible battle.. One that I hope to never see again but has given me soo much.. This process has rescued my faith!!!!

Watching this amazing little girl fight with everything she has, has taught me to never give up that fight. Its a hard lesson.. Its hard to keep that fight going when your heart is breaking... She never gives up though.. How can I??

I want to take the time today to thank God. To thank him for giving me that strength to go on everyday. For giving Sydney and all these other kids who are fighting the strength to keep fighting..

Hopefully, this battle for Sydney will soon be over. That doesnt mean ill ever forget the journey.. Or the people that have walked with us through it.

From the people who have known me my whole life and have cried with me. To the people ive just met and all the people in between.. Know that we love you all !!!!! For in some way you have all touched our lives..

Thank you all for keeping us in your thoughts and prayers!!!!!! Happy Easter !!!!!!!!!!!!!

pss....looks like it might be tuesday for going to ronald mcdonald house after all !!!! thats way cool with me though!!!! thats what the fellow says anyway....lol who knows what dr. frangoul has up his sleeve!!! just knowing that it could be this week is wonderful!!!!!! Happy Easter!!!!!!!!!!! go sydney!!!!!!!

love,

rhonda

Saturday, March 26, 2005 8:01 AM CST

Good morning all !!!!!!! 3.8 this morning!!!!!!!!!!!! Can you believe that??? lol

I tell ya that girl doesnt do anything half way!!!!!!!!!! 3.8 !!!!!! day 11 !!!!!!!!!

Looks like we might actually make that day 14!!!!!! Even if it is to ronald mcdonald house..Its still one step closer to being home!!!!!!!!!!!!!!!!!!!

My baby is just sooo wonderful!!!!!!!!!!

If she keeps things up we will really be out of here early part of next week!!!!!!

Should only have to stay at ronald mcdonald a week or two and then we are free!!!!!!!!!!!

Go Sydney !!!!!!!!!!!!!!!!!!!!!

Mike left me this morning so im pretty lonely!!!! Angie is bringing Baillie home this morning.. I miss her soo bad!!!!!!!Cant wait till we can all be together again!!!!!!!!

Gonna go for now

Thanks for all your thoughts and prayers!!!!!!!!!!

Pss... Just talked to one of the docs. She said probably monday going to ronald mcdonald!!!!!! we'll see for sure butt.......................whoo hoo !!!!!!!!!!!!!!!!! fine by me !!!!!!!!!! already stopping the iv meds one at a time.. thats really whats keeping us here through the weekend....thats fine though.. would rather go home first of the week so i can go to clinic if i get worried about her or anything... im sooo happy though!!!! been a tough ride!!!!!! but i tell ya, we are tougher!!!!!!! ha ha

love you all !!!!!!!!!!!! yee hee !!!!!

love,
Rhonda

Friday, March 25, 2005 7:03 AM CST

OK LISTEN, SIT DOWN. HAVE A CUP OF COFFEE. TAKE SOME DEEP BREATHS......

ARE YOU READY???

IM WAITING..............................

MISS STEM CELL QUEEN HAS STRUCK AGAIN!!!!!!!!!

YEAH, WE'RE PACKING UP AND HEADING HOME!!!!!! HA HA HA

DO YOU REALLY WANT TO KNOW??????

WELL.....................................

HOPE YOU'RE READY.........................

SYDNEYS WHITE BLOOD COUNT IS.............................

YOU ALL KNOW THAT DADDY GUESSED 1.4 WHICH WAS A PRETTY IMPRESSIVE JUMP..................IT WAS ALSO A GOOD GUESS....................

BUT.................................

SYDNEY HAS HER OWN PLANS!!!!!!! WHICH INCLUDE BUSTING OUT OF HERE AS SOON AS POSSIBLE!!!!!!!!!!!!!!

ARE YOU JUST DYING TO KNOW?????

WELL...........................

YOU'RE NOT GOING TO BELIEVE IT!!!!!!!!!!!!!!!!!!!!

HER WBC THIS MORNING ON DAY +10 IS.............. 2.1 !!!!!!!!!!!!!!!!!!!!!!

YEAH YEAH I KNOW..........THERE IS NO MISTAKE..........SHE REALLY IS THAT WONDERFUL!!!!!!!!!!!!!

GOD AND SYDNEY HAVE PLANS WE KNOW NOTHING ABOUT !!!!!!!! WHAT A WONDERFUL EASTER PRESENT !!!!!!!!!!!!

LOOK OUT EAST TENNESSEE !!!!!!!!!!!!! WE'LL BE COMING ROUND THAT MOUNTAIN WHEN WE COME!!!!!!!!!!!!!!

WHICH IS PRETTY SOON!!!!!!!!!

HA HA HA

GO SYDNEY !!!!!!!!!!!!! GO SYDNEY !!!!!!!!!!!!!!!!

WE LOVE YOU LITTLE PRINCESS!!!!!!!!!!

THANKS FOR ALL YOUR THOUGHTS AND PRAYERS!!!!!!!! UM........LETS JUST SAY, THEY ARE SOOOOOOOOO WORKING !!!!!!!!!!!!!!!!!! WHOOOOOOOO HOOOOOOOO

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

GO GOD GO

LIFE IS GRAND!!!!!!!!

LOVE,

RHONDA

Thursday, March 24, 2005 3:55 PM CST

'

SHES ALIVE !!!!!!! SHES ALIVE !!!!!!! GO SYDNEY GO SYDNEY !!!!!!!!! THOSE COUNTS ARE JUST MOVING RIGHT UP !!!!! WONT BE LONG NOW !!!!

TOLD ME TODAY THAT WE MIGHT MAKE THAT DAY 14 AFTER ALL !!!!!!! WHOOO HOOO !!!!!

WAS CALLING HER TODAY THE EAST TENNESSEE OVER ACHIEVER !!!!!!

GUESS WE JUST KNOW HOW TO MAKE EM !!!!!!!! HA HA HA HA GO SYDNEY GO SYDNEY !!!!!!!!

WHITE BLOOD CELLS WENT FROM .1 TO .4 TO .8 THIS MORNING !!!! MIKE IS BETTING ON 1.4 IN THE MORNING!!!! LETS SEE IF HES AS GOOD A GUESSER AS ME !!!!!!!!

THANKS TO YOU ALL FOR YOUR THOUGHTS AND PRAYERS!!!!!!! I AM SOO HAPPY TO SAY I BELIEVE THEY ARE WORKING !!!!!! SYDNEY, YOU ARE MY HERO LITTLE ONE!!!!!!!!

Newest update...hope you all are sitting down!!!!!!! just took her temp and it was.........are you sitting????? it was 97.7 !!!!!!! i know i know......quite a shock huh !!!!!!!! first low low temp in 9 days!!!!!!!! Life is good!!!!!!!! Still feeling pretty crappy, but they say that the mucositis lags behind the counts by a couple of days so i guess shes still hurting.... she is staying awake a little longer and sitting up and playing more she just in general isnt feeling so good... hope the higher the counts the better she feels, and quick!!!!!!!!!! Go Sydney !!!!!! Go Sydney !!!!!!!

LOVE,

RHONDA

Thursday, March 24, 2005 6:14 AM CST

OH MY GOODNESS!!!!!! JUST HAD TO UPDATE!!!!!!! WELL.....ME AND DR. KIM AND THE NURSE TONIGHT HAD A WEE BIT OF A BET GOING ON WHAT HER COUNTS WOULD BE THIS MORNING!!!!!

DR. KIM SAID MAYBE .5 AND THE NURSE SAID WELL, SHES AN OVER ACHIEVER SO PROBABLY .6 . I SAID .8 AND KIM WAS LAUGHING.. NO WAY SHE SAID!!!!!!!!! HA HA HA HA HA

TOLD YA SO!!!!! TOLD YA SO!!!!!!! WHOOOO HOOOOO !!!!!!!!! GO SYDNEY GO SYDNEY!!!!!!

GUESS SOME PEOPLE HAVENT REALIZED THAT US DUDLEY GALS ARE THE BOMB!!!!!!!

GOODNESS, I GOT SOO EXCITED THAT I FORGOT TO TELL YA THE COUNTS!!!!! HA HA HA THEY ARE .8 !!!!!!! AM I GOOD OR WHAT!!!!!

GO SYDNEY GO SYDNEY!!!!!! GROW CELLS GROW!!!!!!! YEAH YEAH!!!!!!!! YOU ARE AMAZING MY LITTLE PRINCESS!!!!!!!!!

THANKS FOR ALL THOSE THOUGHTS AND PRAYERS!!!!!

ps..Dr. KIM IS THE BOMB TOO!!!! SHE WAS AND IS ROOTING FOR SYDNEY!!!!! SHE JUST WANTED TO BET ON THE CAUTIOUS SIDE!!!!!!!! HA HA HA HA HA HA HA HA

SYDNEY JUST MAKES HER OWN RULES!!!!! HA HA HA H GO SYDNEY GO SYDNEY!!!!

LOVE,

RHONDA

Wednesday, March 23, 2005 2:16 PM CST

GUESS WHO HAS COUNTS!!!!!! WHOOO HOOO !!!!!!!!! GO SYDNEY GO SYDNEY!!!!!! THEY ARE ONLY 0.4 BUT THEY WERE 0.1 THAT IS SOMETHING!!!! MEANS THAT THINGS ARE STARTING TO MOVE IN THE RIGHT DIRECTION!!!!!

GO SYDNEY GO SYDNEY!!!! SHE THREW A MASSIVE FIT GOING WALKING TODAY, BUT IT WAS SOME OTHER PT GAL THAT CAME TO GET HER.. SHE WASNT HAVING ANY OF THAT!!!! IT WASNT SWEET SYDNE !!!!!!!!! THEY HAVE A BOND YOU SEE !!!!!! MIGHT HAVE SOMETHING TO DO WITH THE NAME!!!!! I WAS IN THE SHOWER AND HEARD HER SCREAMING ABOUT GOING WALKING AND I WALKED OUT AND SAID "YOU ARENT SYDNE " HA HA THAT GAL SURE LOVED THAT!!! BUT THAT EXPLAINED THINGS TO ME......LOL SHE WANTED HER SYDNE !!!!!!

WE WERE JUST LAYING HER WATCHING RUGRATS AND SHE STARTED RUBBING MY ARM.. I SWEAR I BOUT CRIED!!!!! THAT IS SUCH MY OLD SYDNEY!!!!!! WE ARE SLOWLY STARTING TO SEE SIGNS THAT OUR SYDNEY IS STILL IN THERE!!! THIS WAS A HARD RIDE LET ME JUST TELL YA!!!!! BUT I THINK SHE IS FINALLY BREAKING FREE OF THIS THING!!!!!!

GO MY LITTLE PRINCESS!!!!!!!! LETS GET BETTER SO WE CAN BUST OUT OF THIS PLACE!!!!!!!!!!

SHE IS SITTING UP IN HER PRINCESS TABLE RIGHT NOW PLAYING MY LITTLE PONY PLAYDOUGH WITH DADDY!!!!!! SHES ALIVE!!!!!! SHES ALIVE!!!!!!!!!!! GO MY LITTLE PRINCESS!!!!!!

THANKS TO YOU ALL FOR YOUR THOUGHTS AND PRAYERS!!!!!!

LOVE,

RHONDA

Tuesday, March 22, 2005 9:44 PM CST

Hi all, things are pretty much the same today.. The rash looks some better.. They have had everyone in here today looking at it!! Infectious disease people.. Dermatologists.. you name it....i guess they still think its a drug reaction...

Fever is still going strong.. They seem to think that it will go away when her counts finally come.. She is talking a little more, so i think that the mucositis is trying to clear up a tiny bit...

Im looking for counts any day now!!! Lets hope that they hurry up so all this crap can clear up and she can feel better!!!!!!

All in all she still feels like crap!!!! just a wee bit better crap than a few days ago!!!!!!

Thanks to you all for your thoughts and prayers....

love,
rhonda

Monday, March 21, 2005 10:20 PM CST

Hi all, seems that there is life after transplant!! You tend to forget that when you're going through it..

Yeah, we're just at day +6 but there does seem to be a light peeping through that dark cloud.. I'm finally starting to see my baby.. It wasn't even like my kid for a few days..

I tell ya, I dont ever want to see the likes of this again as long as I live!!!! I was warned, yes I was..I just dont think you are ever truly prepared..

Its kinda funny. Ok, nothing about this process is funny!!!! But....... She is looking worse today than she has since we got here and shes feeling the best she has since transplant!!! her face looks like a huge marshmallow!!!!! I guess thats just part of it.. do keep wondering though if it has something to do with the reaction to those 2 drugs....

It does look like the rash to the drugs has eased up some.. Hopefully that is finally out of the picture!!!

It does seem that we'll actually survive after all!!!! It is sooo good seeing some life back in her!!! You just dont know what that does for me!!!!! Mike had her shaking her butt and doing the chicken dance!!!! it was sooo cute!!! with her fat cheeks and all!!!!!!

She hasnt eaten yet, but she has played with m+ms.. thats a start!!!! ha ha ha thats the first time since tuesday that she didnt slap anything you tried to give her out of your hand!!! Thats my little fighter!!!! ha ha you ought to see her try and take tylenol!!! whooo hoo thats an experience you would not likely forget!!!!!

I had a nurse tell me to leave the room and she went to get 2 other nurses.. She said that they could get her to take the tylenol.... well................ha ha ha ha ha ha ha ha ha ha ha I left all right!!!! I stood out in the hall and listened... lets just say that she didnt take the tylenol.........lol lol and out walked 3 red faced sweating nurses!!!!! ha ha ha guess she showed them!!!! not funny i know... trust me.. ive been red faced and sweating lots and lots because of fighting with her.. its no fun.....but.. does show shes a fighter..and a fighter i want!!!!

Thank you all for your thoughts and prayers!!!! Cant wait to get back to knoxville!!!!!! I wouldnt even mind sitting in clinic for 8 hours!!!!! ha ha ha Go Sydney!! Go Sydney!!!!! Fight Fight Fight!!!! Grow Cells Grow!!!!!!!

Love,
Rhonda

Sunday, March 20, 2005 2:46 PM CST

Hi all, good things to tell today!!!!! Sydney has joined the land of the living!!!!!!

She broke out with that horrible rash again so they are sending infectious disease people to come look and see what they can give her..Seems that the drug that they replaced the other one with is kin to it.. Which doesnt always mean they will have a reaction to it, but obviously she is reacting to something..

She still has all the other things going on too and her counts havent started coming up yet but for some reason she is feeling better!!!!! Shes just trying to hit mommys goal of going to ronald mcdonald at day +14 !!!!!! Today is day +5 so it could possibly happen!!!!!

She walked the halls today and took pictures!! she had soo much fun!!!! Up until a few minutes ago she had been awake all day!!! That is soo wonderful!!! We had hardly seen her eyes since tuesday!!!!!!!!

Mike came in this weekend.. He is staying till friday i think.. Baillie is on spring break and his sister angie took her to ky so mike took the week off and is spending it here.. Shes really been soo good.. I miss her soo much!!!!! I cant wait till we are home and our life has settled down some..

I'll update again in a day or so.. Go Sydney Go Sydney...... you little Turkey!!!!!!!!! You gobble your way outta here!!!!!!!!!!!!!! AT DAY +14 !!!!!!!!!!!!!!! HA HA HA HA HA HA HA HA

Thanks for your thoughts and prayers!!!!

love,
rhonda

Saturday, March 19, 2005 11:16 PM CST

Hi all, wanted to do a quick update.. Sydney is hanging in there. Still has a high temp. Still has the bad mucositis. Still has bad diarrhea.. they tested it today to see what it is.. havent heard anything yet..

They started her on that anti fungal medicine today and took her off of that antibiotic they think she had a reaction to and replaced it with another one.

Shes pretty much out of it.. Tomorrow is day +5. Hopefully in about a week her counts will start to come up and she will start to feel better....

I cant wait.. I want my princess back!!! Soo hard to see her this way!!! Say a little prayer for her that this will all end soon!!!

Thanks for all your thoughts and prayers!!

love,
rhonda

Saturday, March 19, 2005 1:30 AM CST

Hi all, my little princess is hanging in there.. She is still feeling pretty rough.. Seems the mucositis is going all the way down..i had heard about it doing that but surely didnt want to see it happen...she is having a really hard time getting it to come up too, its gotten so thick it gags her and its like shes choking.. its absolutely horrible to witness... couldnt imagine having to actually go through it.. poor sprout!!!!!

Still not able to get that temp down much.. it will go down to 102 and then pop right up again.. did get one dose of tylenol down her today though and you would think i won the lottery or something i was soo happy!!!! thats actually when it went down to 102.. not counting on getting any more down her tonight.. not with the mucos coming up and the massive runs on top of that....

Good news is she is able to rest some.. Thanks to benadryl and adavan that is!!!! She got this horrible rash from head to toe and they are thinking its from one of the antibiotics.. she is getting bedadryl for that..its looking pretty rough again in her groin area so really not sure about that one... she looks like shes been scalded...

Well, tomorrow is day +4!!!!!! I told Dr. Frangoul that we were leaving on day +14.. Well... he just kinda laughed at that one!!!! Keep laughing buddy!!! ill be laughing too, as i walk out these doors with sydney on day +14!!!!!! ha ha ha guess he just dont realize that we dudley gals are over achievers!!!!!!!!

Tomorrow is another day and i think Sydney is going to wake up and start doing her crazy turkey call!!!!!! Go Sydney, Keep Fighting you little turkey!!!!!!! Grow Cells Grow!!!!!!!!!!!!!

Thank you all for your thoughts and prayers!!!!!!

Love
Rhonda

Thursday, March 17, 2005 9:39 PM CST

HI ALL, WANTED TO UPDATE SOME WHILE I HAD A MINUTE. WE ARE OK HERE. SHE IS ONE SICK LITTLE GIRL BUT WE KNEW THAT WAS COMING..

SHE HAS RAN A REALLY HIGH TEMP SINCE EVENING OF TRANSPLANT.. IT JUST WONT GO DOWN.. ITS STAYING BETWEEN 102 AND ALMOST 105. THEY TOOK CULTURES OF HER LINE AND IT ISNT SHOWING ANYTHING.. GUESS THAT SOME KIDS JUST DO THIS AFTER TRANSPLANT..

SHE HAS THE MUCOSITIS REALLY BAD. SHE CANT EVEN TAKE A DRINK. IT IS COMING UP AWFUL!! IT IS ALMOST PURE BLOOD.. ITS MAKING ITS WAY TO HER MOUTH NOW TOO.. I WAS HOPING THAT IT WOULDNT, BUT KNEW THAT THINGS WERE GOING TO GET WORSE AS HER COUNTS DROPPED.

SHE CANT EVEN TAKE TYLENOL TO GET THE TEMP DOWN SOME. THE TYLENOL JUST COMES RIGHT UP WITH THE MUCOS.. ITS AWFUL!! WE KNEW THESE THINGS WERE COMING. JUST NOT EASY TO WITNESS...

I JUST KEEP TELLING MYSELF DAY 10 DAY 10.. NO ITS NO MAGIC NUMBER. I JUST KNOW THATS ABOUT WHEN HER COUNTS WILL START COMING UP AND THESE SYMPTOMS SHOULD START EASING UP..

RIGHT NOW SHE PRETTY MUCH IS TRYING TO SLEEP THROUGH IT.. SOUNDS GOOD TO ME.. I DO HAVE TO MAKE SURE SHE GETS BATHED DAILY AND GETS UP.. SHE CANT JUST LAY ALL DAY.. BUT SHE JUST FEELS SOO CRAPPY!! POOR THING IS SHAKING LIKE CRAZY FROM THE SUPER HIGH TEMPS I GUESS..

SHES CONSTANTLY HAVING TO BOLT UPRIGHT TO GET UP THAT MUCOS IN HER THROAT.. THAT IS THE WORST TO SEE.. YOU CAN TELL IT HURTS SOO BAD!!

SHE IS A TOUGH GAL THOUGH.. SHE IS GONNA GET THROUGH THIS AND FEEL BETTER THAN EVER!!! I CANT WAIT.. I JUST KEEP SAYING OVER AND OVER, THIS IS THE WORST, THIS IS THE WORST..AFTR THIS ANYTHING WILL BE A PIECE OF CAKE!!!

ILL UPDATE MORE TOMORROW IF I GET THE CHANCE.. IF YOU ALL WANT TO SEE A NEUROBLASTOMA MIRACLE PLEASE GO TO THIS WEBSITE.. WWW.CARINGBRIDGE.ORG/PAGE/JOSH THIS FAMILY HAS TOUCHED MY HEART AND SOUL AND MY LIFE.. I WILL GO INTO MORE DETAIL ABOUT THEM TOMORROW.. YOU WILL CRY.. I HAVE, ALOT!!! THEY ARE JUST AMAZING!!! THEY HAVE SENT US STUFF AND EMAILED.. I WILL HAVE TO GO INTO DETAIL ABOUT ALL THAT TOMORROW TOO.. ITS TOO MUCH TO WRITE TONIGHT!!! SERIOUSLY THEY HAVE TOUCHED ME AS THEY WILL YOU!!!!!

THANKS FOR YOUR CONTINUED THOUGHTS AND PRAYERS!!!

RHONDA

Wednesday, March 16, 2005 10:43 AM CST

KEEP SYDNEY IN YOUR PRAYERS IN THE NEXT FEW DAYS.....HAD A HORRIBLE NIGHT LAST NIGHT.... JUST BAD........ IF I CANT UPDATE ILL HAVE MIKE DO IT.... THANKS FOR ALL YOUR THOUGHTS AND PRAYERS.....

RHONDA

Tuesday, March 15, 2005 4:29 PM CST

MY BABY HAD HER TRANSPLANT TODAY!!!!!! SHE IS SOO AMAZING!!!! THEY TALKED ABOUT ALL THESE THINGS THAT WOULD HAPPEN RIGHT AFTER, LIKE THROWING UP AND STOMACH CRAMPS BUT SHE JUST SLEPT THROUGH IT!!!!!! SHE IS ON MORPHINE TODAY... ITS HER MOUTH!!!!! GUESS ITS MORE IN HER THROAT, SHE DID THROW UP SOME BLOOD TODAY.. THEY SAID IT WAS HER THROAT... THE MORPHINE SEEMS TO BE HELPING...SHES KINDA LOOPY THOUGH....I THINK ALL THINGS CONSIDERING, SHE IS DOING AMAZING!!!!! GOTTA GO FOR NOW.. JUST WANTED TO LET EVERYONE KNOW SHE HAD HER TRANSPLANT!!!!!! JUST GOT TO WAIT ON THOSE CELLS TO GROW!!!!!!! GROW CELLS GROW!!!! THANKS FOR YOUR THOUGHTS AND PRAYERS!!!!

LOVE RHONDA

Monday, March 14, 2005 8:44 PM CST

HI ALL, GREAT DAY TODAY!! SHE HAS BEEN SICK JUST ONCE AND THAT WAS AFTER SHE BEGGED FOR MILK...THAT KID LOVES MILK..IT JUST MAKES HER THROW UP HERE LATELY...THE MOUTH SORES HAVE STARTED....SHE HAS TRIED AND TRIED TO EAT.. SHE WANTS TO SOO BAD!!! SHE JUST CANT.. EVEN HER BELOVED PINK GOGURTS HURT HER MOUTH..THIS IS JUST THE BEGINING TOO..I HOPE THAT WHATEVER COMES WILL HEAL QUICKLY... EVERYONE KEEPS TELLING ME THESE NEXT 10 OR 14 DAYS ARE GONNA BE THE WORST!! IVE HAD SEVERAL PEOPLE SAY THAT I HAVENT SEEN CLOSE TO WHAT IS COMING... SHE HAS PROVEN EVERYONE WRONG MORE THAN ONCE. I KNOW SHES GONNA GET SICK, I JUST HOPE THAT SHE GETS OVER IT QUICKLY....TOMORROWS THE BIG DAY!!!!!! THEY CAME IN EARLIER AND SAID THEY WILL START ABOUT 1 OR 2.. THEY CALL IT A REBIRTH AROUND HERE... SHES GETTING HER OWN STEM CELLS SO IM NOT REALLY SURE ABOUT THAT.. BUT IT IS KIND OF A REBIRTH... IT WILL ERASE SOME OF THE DAMAGE DONE BY THE CHEMO... THATS A REBIRTH TO ME!!!! IT WILL BE JUST ME HERE BUT IM STILL GONNA DO SOMETHING FOR HER... I HAVE A GIFT PUT BACK FOR HER TRANSPLANT DAY. WE HAD A PARTY FOR THE DAY THAT HER CHEMO ENDED. I BOUGHT CAKE AND HAD THEM PUT NO MORE CHEMO ON IT!!! IT WAS CUTE!!!! AND SHE GOT SOME NEW TOYS!!!! SHE NEEDS THEM HUH? LOL LOL AND 2 MORE DORA SHEET SETS!!!!! HEY, CANT HAVE TOO MANY AROUND HERE!!! HELP MOMMY NOT HAVE TO DO LAUNDRY EVERYDAY!!! IM JUST DREADING SEEING HER SO SICK... I JUST HAVE TO KEEP TELLING MYSELF THAT THIS IS WHAT WE HAVE TO DO TO BE FREE OF THIS MONSTER... SAY A LITTLE PRAYER FOR MY WEE ONE.. PRAY THAT THESE MOUTH SORES DONT GET TOO BAD AND THAT THESE CELLS ENGRAFT QUICKLY AND START PRODUCING THE RED BLOOD CELLS, WHITE BLOOD CELLS AND PLATELETS THAT SHE NEEDS. SHES SUCH A BIG GIRL...I TELL YA IM JUST SO PROUD OF HER....WE PLAYED AND PLAYED TODAY!!!! WE PAINTED, COLORED, BUILT THINGS, PLAYED BABIES, WATCHED MOVIES, TOOK A WALK, READ BOOKS AND WORKED TONS AND TONS OF PUZZLES!!! IM NOT SO SURE ID BE ABLE TO DO ALL THAT STUFF IF I HAD BEEN THROUGH WHAT SHE HAS!!!! GO WEENA!!!! GO BAILLIE TOO!!! SHE IS SUCH A DARLING LITTLE REDHEADED THING!!! SHE TOLD ME TODAY SHE LOVED ME MORE THAN A ZILLION PIES!!!!! THATS PRETTY GOOD COMING FROM ONE OF MY KIDS CONSIDERING HOW MUCH THEY LOVE TO EAT!!! HA HA IM SO PROUD OF HER TOO. SHE HAS BEEN THROUGH ALOT TOO AND HAS JUST BEEN WONDERFUL!!! MIKES SISTER ANGIE IS COMING TO GET HER THE END OF THIS WEEK WHILE SHES ON SPRING BREAK I THINK.. BETWEEN HER, GRETCH AND MIKES GRANDMA SHE WILL BE WELL LOOKED AFTER...MIKE IS GOING TO TAKE THAT WEEK OFF AND COME STAY WITH ME.. I REALLY MISS BAILLIE SOMETHING AWFUL.. I NEED TO SEE HER SOO BAD....ITS JUST WHAT OUR LIFE IS RIGHT NOW.. I REMEMBER A TIME WHEN MY KIDS HAD NEVER STAYED WITH ANYONE BUT US... WE HAD BEEN MARRIED FOREVER AND NEVER WENT ON A DATE BECAUSE WE NEVER LEFT THEM WITH ANYONE. NOW IM LIKE CALLING STRANGERS OUT OF THE PHONE BOOK BEGGING THEM TO COME GET HER!!!! HA HA KIDDING........ BUT CLOSE!!!!! ANY VOLUNTEERS??? HA HA AGAIN!!!!! THANKS FOR ALL YOUR THOUGHTS AND PRAYERS!!!! JUST KNOW THEY ARE WORKING!!!! THIS GAL IS TOUGH!!!!!

LOVE RHONDA

Sunday, March 13, 2005 3:41 PM CST

HI ALL, SYDNEY IS PRETTY SICK TODAY...SHES ASLEEP RIGHT NOW. THEY GAVE HER SOME BENADRYL, IT ALWAYS KNOCKS HER OUT.. THEY HAD TAKEN HER OFF ALL NAUSEA MEDS AND IT JUST HIT HER HARD ALL OF THE SUDDEN... PUT HER BACK ON KYTROL AND ADAVAN BUT SHE JUST GOT SO SICK IT REALLY HASNT KICKED IN YET. HOPEFULLY THE REST WILL HELP SOME.. THEY ARE PUTTING HER ON TPN NUTRITION TONIGHT TO HELP OUT WITH THE NOT EATING GOOD. THIS WAS JUST SUCH A BAD CHEMO.. SHE DID REALLY GOOD ALL THROUGH IT BUT ITS TAKING ITS TOLL.... HOPEFULLY SHE'LL HAVE A BETTER NIGHT....ILL UPDAT AGAIN WHEN I CAN...THANKS FOR YOUR THOUGHTS AND PRAYERS....

RHONDA

Saturday, March 12, 2005 7:26 PM CST

WHAT A DAY WHAT A DAY!!!! NO MORE CHEMO!!!!! YEAH!!!!! I TELL YA, MY LITTLE DARLING NEVER STOPS AMAZING ME!!!! SHE HAS WENT FULL FORCE TODAY!!! NO SICKNESS!!!! SHE IS TRULY AMAZING!!!! NO MORE CHEMO!!!! CAN I SAY IT ONE MORE TIME?? NO MORE CHEMO!!!!!!! THEY ARE DOING A RADIOTHON HERE JUST LIKE AT HOME AND I LISTENED TO IT SOME TODAY WHILE IN THE CAR SEARCHING FOR A TARGET...FOUND IT BY THE WAY....HA HA LOOK OUT NASHVILLE!!!!! HA HA ANYWAY, THERE WERE SO MANY THINGS THAT WERE SAID THAT TOUCHED ME.. THIS ONE MAN THOUGH BROKE MY HEART.. HE WAS TALKING ABOUT HIS SON. HE IS 4. HE SAID THAT HIS SON WAS MORE OF A MAN THAN ANY MAN HE KNOWS. MORE OF A MAN THAN HE IS...HE SAID THAT YOU ARE SUPPOSED TO BE YOUR CHILDS HERO BUT HIS SON WAS HIS... I CRIED OVER THAT ONE I TELL YA!! HE IS SO RIGHT THOUGH!!!! SYDNEY IS MY HERO!!! YOU JUST CANT IMAGINE THE FEELING OF LOOKING IN THE EYES OF YOUR LITTLE CHILD AND REALIZING THAT SHE TAUGHT YOU HOW TO LIVE. I WILL NEVER BE THE SAME AFTER THIS EXPERIENCE. I HAVE LEARNED SO MUCH IN MY LIFE. THE SHEER HORROR OF THE THINGS THAT I HAVE WITNESSED IN MY LIFE COULD BRING ME TO MY KNEES. IT DOES, BUT NOT IN A BAD WAY. IT BRINGS ME TO MY KNEES IN THANKS TO GOD. THROUGH THESE THINGS I AM BECOMING THE PERSON I NEED TO BE. KEEP SAYNG YOUR PRAYERS FOR OUR LITTLE SYDNEY, BUT PLEASE SAY A PRAYER FOR US ALSO. PRAY THAT GOD WILL CONTINUE TO GIVE US THE STRENGTH TO NOT JUST HELP OUR LITTLE ANGEL FIGHT THIS BATTLE, BUT ALSO THE STRENGTH TO KEEP LEARNING AND GROWING FROM IT. THANKS FOR YOUR THOUGHTS AND PRAYERS!!!!

OH AND ONE MORE THING!!! NO MORE CHEMO!!!!! HA HA

RHONDA

Friday, March 11, 2005 7:30 PM CST

HI ALL, GREAT DAY TODAY!!!!!! I TELL YA MY GIRL IS SOO AWESOME!!!!!! SHE JUST AMAZES ME ON A MINUTE BY MINUTE BASIS!!! I KNOW THERE ARE ROUGH DAYS AHEAD, BUT I REALLY THINK SHE CAN GET THROUGH THIS!!!!! SHE DID GET SICK THIS MORNING. BUT SHE ALWAYS DOES WHEN HER KYTROL IS DUE.... OTHER THAN THAT SHE IS JUST GREAT!!!!!! MIKE IS IN FOR THE WEEKEND. BAILLIE IS STAYING THE WEEKEND WITH A FRIEND SO HE IS STAYING HERE WITH ME.. I MISS HER SOO BAD AND REALLY WANTED TO GET TO SEE HER BUT SHE NEEDS TO HAVE SOME FUN. SYDNEY WAS GLAD TO SEE HER DADDY.. HE BROUGHT HER TOYS!!!! OFCOURSE!!!!! MORE DORA STUFF!!!! NO KIDDING RIGHT!!!! LOL AND SOME MORE PUZZLES!! COULD THE KID ACTUALLY NEED ANY MORE DORA STUFF, OR PUZZLES?? LOL LOL TOMORROW AT 1:30PM NASHVILLE TIME MY SWEET WEENA WILL FINISH HER LAST CHEMO!!!!!! IT WAS HARD FOR ME TO SAY THAT.. RELAPSE IS SOO COMMON WITH THESE KIDS.. BUT YOU KNOW WHAT. ITS OK FOR ME TO SAY THAT. ITS OK FOR ME TO BELIEVE IN HER. TO BELIEVE THAT OUR PRAYERS COULD BE ANSWERED AND GOD COULD HEAL HER. SO IM SAYING IT!!!!! AGAIN AND AGAIN!!!!!! MY BABY WILL GET HER LAST CHEMO TOMORROW!!!!!!!!! JUST ONE LAST THING TO GO THROUGH FOR A WHOLE NEW LIFE!!!!! GO WEENA!!!!!! THANKS TO YOU ALL FOR YOUR THOUGHTS AND PRAYERS!!! ILL UPDATE SOON

RHONDA

Thursday, March 10, 2005 1:34 PM CST

HI ALL, GOOD DAY TODAY. SHE DID THROW UP THIS MORNING BUT SEEMS TO BE FINE NOW. SHE IS EATING SOME SO THAT IS GOOD... AS LONG AS WE CAN GET HER TO EAT SOMETHING...SHE JUST OUT AND OUT REFUSES TO TAKE HER MEDS ORALLY SO THEY ARE GIVING THEM THROUGH HER TUBES NOW.. SHE IS DOING A WEE BIT BETTER ABOUT HER MOUTH CARE. THIS IS DAY -5 SHE WILL GET HER STEM CELLS BACK ON DAY 0. WHICH IS TUESDAY.. I THINK WE'LL HAVE A PARTY ON THAT DAY!!! ON A NEW LIFE!!! A NEW START!!!! ILL UPDATE MORE LATER...THANKS EVERYONE FOR ALL YOUR THOUGHTS AND PRAYERS!!!!!

RHONDA

Wednesday, March 9, 2005 12:20 AM CST

HI ALL, WONDERFUL DAY SO FAR!!!! SYDNEY IS DOING GREAT!!!! NOT SICK!!!! SHE IS JUST AMAZING!!!! SHE WALKED THE HALLS THIS MORNING WITH THE PHYSICAL THERAPIST FOR LIKE 30 MINUTES.. SHE WAS STOPPING AT THE ROOMS AND DOING THE TURKEY CALL AND DANCE FOR THE KIDS AND NURSES!!! HA HA THEY GOT A BIG KICK OUT OF THAT LET ME TELL YA.. HOW MANY KIDS DO YOU SEE ACTING LIKE A TURKEY?? HA HA HA HA YOU WOULD NEVER KNOW THAT SHES GOT MASSIVE CHEMO POURING THROUGH HER BODY!!! CHECK OUT THE LINK TO PICTURE PAGE. WE WERE MESSING AROUND WITH THIS WEBCAM THIS MORNING AND TOOK SOME PICTURES....ALL OF YOU THAT EMAIL ME PERSONALLY, OR WANT TO THERE IS A LINK AT THE BOTTOM OF THE PAGE WITH IT ON IT. IM CHANGING IT TO MY YAHOO THOUGH. ITS EASIER TO GET WHILE IM HERE THAN COMCAST... ILL UPDATE LATER....THANKS FOR YOUR THOUGHTS AND PRAYERS!!!! THEY ARE WORKING!!!!!!!

RHONDA

Tuesday, March 8, 2005 5:44 PM CST

HI ALL, WE ARE HERE!!!!! THEY STARTED HER CHEMO AROUND 1. SHE IS DOING AMAZING!!!! THE NURSE TODAY SAID THAT SHE HAS BEEN HERE 25 YEARS AND HAS NEVER SEEN A MIRACLE LIKE SYDNEY. SHE SAID BEFORE WE CAME SHE WAS EXPECTING THIS FRAIL SICK ACTING LITTLE GIRL. IMAGINE HER SURPRISE WHEN SHE WALKS IN THE ROOM TO LITTLE MISS SYDNEY IN ACTION!!! DOING HER TURKEY CALL AND DANCE!!!! SHE HAD ME CRYING SO HARD!!!! SHE JUST KEPT LOOKING AT HER AND SHAKING HER HEAD AND CALLING HER A MIRACLE... SHE IS JUST SOO HAPPY!!!!! LOVE THE NURSES!! EVERYONE SEEMS SOO NICE! ALOT OF RULES, BUT THEY ARE FOR A REASON. I THINK WE ARE GOING TO BE JUST FINE..YOU WOULD NEVER KNOW SHE IS GETTING CHEMO!!!! I HOPE SHE CONTINUES TO DO THIS WELL!!!! MIKE WENT HOME TO BE WITH BAILLIE AND WORK TOMORROW.. I MISS HIM ALREADY.. I MISS BAILLIE SO MUCH ITS A PHYSICAL PAIN!!! HE'S COMING BACK FRIDAY AND WE'RE GOING TO CHANGE PLACES.. ILL SPEND THE WEEKEND WITH BAILLIE AND HE'LL STAY WITH SYDNEY.. WONT GET TO SEE EACH OTHER BUT ATLEAST HE CAN SEE SYDNEY AND I CAN SPEND SOME TIME WITH BAILLIE... ILL GO FOR NOW, MISS PRISS IS WORKING A DORA PUZZLE, SHAKING HER BUTT AND SINGING THAT COMERCIAL ABOUT PUTTING A LIME IN THE COKE....LOL YEAH, WE ARE SPECIAL!!!!!! THANKS FOR THE THOUGHTS AND PRAYERS!!!!

rhonda

Sunday, March 6, 2005 12:31 AM CST

HI ALL!!! V DAY IS FAST APPROACHING!!!! WE'VE DECIDED TO LEAVE EARLY IN THE MORNING TO HAVE ANOTHER NIGHT AT HOME. WE'RE GONNA TRY AND GET OUT OF HERE BY 5 WHICH WILL GET US THERE AT 7 THEIR TIME. THAT WILL GIVE US AN HOUR TO PLAY WITH IN CASE TRAFFIC IS BAD...IM STARTING TO GET A LITTLE NERVOUS, BUT ALL IN ALL WE'RE OK. JUST READY TO GET IT OVER WITH. I THINK THEY MAY BE ABLE TO START ON TUESDAY. SHE WILL GET 4 DAYS OF CHEMO. OFF 2 DAYS, AND GET HER STEM CELLS BACK ON THE 7TH DAY. THEN AFTER THAT ITS JUST WAITING FOR HER COUNTS TO COME UP. PRAY THAT SHE DOESNT GET TOO SICK. SHES FEELING SOO GOOD, I GUESS I JUST DONT WANT TO SEE HER THAT SICK. SHES FINALLY ABLE TO BE LIKE OTHER KIDS... I JUST HAVE TO KEEP TELLING MYSELF THAT SHE HAS TO GO THROUGH THIS TO GET BETTER.. THANKS AGAIN TO YOU ALL FOR YOUR THOUGHTS AND PRAYERS!!!!

RHONDA

Saturday, March 5, 2005 1:35 PM CST

ANYBODY HAVE ANY MOVING BOXES??? HA HA HA HA HA HA WONDER HOW MUCH THAT ROOM WILL HOLD?? I TALKED TO BECKY AT VANDERBILT THURSDAY AND SHE TOLD ME THE ROOM DONT HAVE A FRIDGE AND I CANT BRING A COFFEE POT.... OH WELL, THEY'D BETTER KEEP IT BREWING ALL DAY!!!! HA HA YOU ALL KNOW HOW MUCH I LOVE MY COFFEE!!!! GOTTA GO, TRYING TO NOT PACK THE WHOLE HOUSE!!!! UPDATE WHEN WE GET THERE MAYBE....

THANKS FOR YOUR THOUGHTS AND PRAYERS!!!!

RHONDA

ps. i would love to know who slipped into my house in the middle of the night and gave my kids hyper pills!!!!!! its like they know they wont be seeing each other for a while and are getting all the running, jumping and craziness all out in one day!!!!! ha ha HELP ME!!!!!!!! ha ha ha ha

Thursday, March 3, 2005 11:19 AM CST

And the countdown begins!!!! I'm calling it V day... Vanderbilt day!! ha ha I feel really good about the situation. This is just one more step to ridding her completely of this.. She has proven herself so many times. She is so strong. Dang, she has to be with the way she eats!!! I'll just give a rundown of what she has eaten so far today...It is now 12:25 in the afternoon. She has had a bowl of cereal, 3 gogurts, a whole handful of pepperoni and a big bowl of strawberrys!!!!! Its what my life consists of.....feading babies!!!! ha ha I love it though!!! She may be 300 pounds when this is all over and we may have to make all the doors bigger but hey, she'll be happy!!!! I was asked yesterday wasnt I angry that her cancer wasnt caught a long time ago. Angry because she had to suffer for so long. Ya know, I suppose I am.. I dont really know about angry, maybe just sad at times. It was a horrible feeling to go so long knowing in your gut and heart that something was wrong with your baby and not knowing what.. It would be so easy to go with those feelings. My fear is if i let those feelings of anger and hurt have too much control, they will destroy me. You know what, I have her right now. At this very moment, on march 3, 2005 at 12:48pm Sydney is running around the house pretending to be a turkey.. She is eating me out of house and home. She is running around at full speed with a constant smile on her face. She jumps, she runs, she gets down on all fours puts her head down and butt up and wiggles, laughing the whole time... She comes up to me and puts her arms high in the air and says "i love you this much mommy". How can you witness such pure joy everyday and still be angry?? Thats why i smile. Thats why im laughing and jumping around and being silly all the time. I can, and so can she..And to me thats a beautiful thing!!!!!

Thank you all so much for your thoughts and prayers!!!

rhonda

Wednesday, March 2, 2005 11:39 AM CST

HI ALL, GOOD DAY TODAY!! WENT TO CLINIC. EVERYTHING LOOKS GOOD!! WE ARE READY TO GO, JUST COUNTING THE DAYS!!! JUST POSTED NEW PICS ON THE LINK AT BOTTOM OF PAGE..TOOK SOME GREAT ONES AT CLINIC TODAY...SORRY THEY ARE KINDA BLURRY, I HAVENT FIGURED OUT THIS CAMERA YET... ILL UPDATE IN A DAY OR SO....THANKS AGAIN FOR YOUR THOUGHTS AND PRAYERS!!!

RHONDA

Monday, February 28, 2005 1:45 AM CST

LOTS OF EATING, LOTS OF PLAYING AND LOTS OF LOVING GOING ON IN THE DUDLEY HOUSEHOLD!!!! NOT MUCH IN THE NEW NEWS DEPARTMENT.. SOMETIMES THATS THE BEST KIND OF NEWS....NOTHING !!!!!!!! WE ARE ALL DOING GREAT!!!! GLAD TO BE HOME...ENJOYING IT WHILE WE CAN!!! GOING TO BE PUTTING UP SOME NEW PICS IN THE NEXT DAY OR SO!!! THANK YOU ALL FOR YOUR THOUGHTS AND PRAYERS!!!

RHONDA

Friday, February 25, 2005 10:22 PM CST

Hi all, We are home!!!!! ended up staying 3 nights. She did have an infection in her line. Home health came and showed us how to give her antibiotics through her line so we can go home. she will get that for 10 days 4 times a day. We are scheduled to go to vandy on the 7th. lets hope that we dont have something that delays us this time. I really want to get this whole transplant over with. Bone marrow test came back. The liquid part of her marrow is clean but the tissue sample they took does show a really small amount on the right side.. That means that in her whole body which was practically everywhere, it is only in two very tiny areas!!!!!!!! The chemo in transplant should hopefully take care of that... Going to bed now!!! Got to get up at 2 to start her antibiotic and stay up until 3 till its done.. Ill update when i get a chance.. Thanks for your thoughts and prayers...

rhonda

Wednesday, February 23, 2005 7:26 PM CST

hey all, ended up in er last night about 4 hours after we got home. syd woke up with a temp of 103.8 under her arm. we stayed in the er till 5:30 and then got a room. they're keeping her again tonight giving her antibiotics. they thought it might have possibly been the blood she got last night. now they are showing that something might be growing in one of her lines. we'll know more tomorrow. mike is staying with her tonight so i can try and get packed.. looks like we're still due in nashville friday morning. if something is starting in her line then we may get delayed. im gonna go, i have a million things to do. try and update in a day or so..... thanks for your thoughts and prayers....

rhonda

Tuesday, February 22, 2005 8:04 PM CST

Hi all !!! Just got home. Sydney did good today with her bone marrow.. She felt pretty yucky for about 30 minutes and then ate 10 nuggets and fries!!!! ha ha thats my little piggy!!!! she ended up getting blood which is good so we dont have to end up going to clinic before we head to nashville. Hoping to hear something by thursday about the bone marrow... praying for clean scans!!!!!!! Had a long talk with Dr. Malik today and i feel better all around.. I yacked the poor mans head off!!!! He handles my non stop questions pretty well i'll give him that... I really just feel like she's gonna do ok. Had a message from Becky from nashville when i got home. She said that even though the urine test was good, they have had some things come up with these neuroblastoma kids and he wants to go ahead and do the nuclear kidney test. That means that we have to be in clinic at vanderbilt at 8am friday morning. We'll be leaving sometime thursday afternoon. I'm heading off now i have a thousand and 1 things to do. thanks for your thoughts and prayers....

rhonda

Monday, February 21, 2005 11:10 AM CST

hi all, just got back from clinic. no blood products today!!!! that was a surprise i tell ya!!! and.........we arent going to nashville tomorrow!!! Dr. Malik made a call to the transplant dr. in nashville and said that he was going to do the bone marrow here....sounds good to me!!!! we are going in tomorrow for that and he said she'll probably need blood by then, so we're in for a long day tomorrow... and.....we go in for transplant friday instead of monday.. really that is good for us though. mike can go and help me pack everything up and baillie wont have to miss school. we'll have to take turns with her though since baillie cant be in the unit but we'll make do.. i talked to him today about that spot that im worrying about. he said it may not be much of anything and that the chemo should take care of it.... he said that really shes had a better than expected response. he seems pleased and said that she is doing great!! especially when you think back to where she started out at... i feel a little better about it now. im still worried sick, but am feeling better.. this transplant terrifies me. i talked to a woman today who's kid had neuroblastoma. the only one ive met so far...she was telling me these horror stories....and that they would have me scared to death before we start.. she said that it would be like getting the news all over again..i was like THANKS!!!!!!!!!! truth is, i know all they will tell me...i know the risks.....im ready though. this is something that she has to do, and im just ready for this next step in beating this awful disease!!!!! pray for us this week and the weeks ahead.. shes gonna be pretty sick... from what i gather the biggest thing is the mouth problems they get.. takes out the lining of their mouth and throat and stomach..thats why its so hard for them to eat and end up with feeding tubes...... i hope that shes kicks butt like shes always done!!!! lets not forget that we can never underestimate miss sydney!!!!! she plays by her own rules!!!! and shes playing to win!!!!!!!

rhonda

Saturday, February 19, 2005 9:49 PM CST

Hi all, girls had a great weekend!! Angie and Grandma Joyce came up from ky. They left this morning. The girls had soo much fun!! Sydney wouldnt let grandma joyce out of her sight. She is still feeling really good. A little tired maybe. She will probably need some blood products monday. Got a call from Dr. Malik today. The scans came back. There is no signs of any cancer in any tissue anywhere. There was only one small spot on her femur. It was really bad in that area. That is wonderful news but still scares me. I know im supposed to be thankful. Believe me, I am!!!!! It was soo bad!! And to have it almost completely gone is just amazing!!! I just wanted it gone before transplant. Im going to talk to Dr. Malik monday when we go in for clinic. Im hoping that the chemo they give her in transplant will take care of that spot. My fear is what if it dont. I would love for them to do radiation on that spot before transplant to get it gone. I dont think they will though. Shes not due for radiation till a month after transplant. We will be leaving monday evening for nashville. Wont be back till wednesday. We will get the results of her bone marrow test before we come home. Pray that its not in her bone marrow!!! We will be home sometime wednesday evening then go back for transplant on monday the 28th. Thanks for your thoughts and prayers!!! We need them right now!!!

rhonda

Wednesday, February 16, 2005 6:57 PM CST

HI ALL! SYDNEY IS STILL FEELING GREAT!! JUST BEEN SUPER BUSY!! TOOK HER TO THE DENTIST TODAY TO MAKE SURE HER TEETH ARE IN GOOD SHAPE SO NO CHANCE OF INFECTION HITTING DURING TRANSPLANT. THEY WERE FINE. WE ALSO HAD HER FIRST OF 2 MIBG SCANS TODAY. IT WAS THE LONGER ONE, 2 HOURS. WE GO TO CLINIC WITH THE CHICKENS TOMORROW FOR POSSIBLE BLOOD AND PLATELETS AND THEN THE OTHER SCAN TOMORROW AFTERNOON... HEADING TO VANDY MONDAY NIGHT. WE HAVE TO BE IN CLINIC THERE TUESDAY MORNING FOR HER BONE MARROW TEST. THEN WE STAY OVERNIGHT AGAIN TO MEET WITH THE DR. WEDNESDAY. WE COME HOME FOR A FEW AND THEN WE GO IN FOR TRANSPLANT ON THE FOLLOWING MONDAY THE 28TH.. THEY SHOULD BE ABLE TO START RIGHT AWAY WITH THE TRANSPLANT WHEN WE GET THERE, I HOPE THAT IS!!! THE GIRLS ARE REALLY EXCITED!!! MIKES SISTER ANGIE AND HIS GRANDMA ARE COMING TO SEE THEM TOMORROW. THEY ARE STAYING TILL SATURDAY.. THEY LOVE WHEN AUNT ANGIE COMES TO SEE THEM!! THEY HAVE BEEN ASKING WHEN SHES COMING ALL DAY!! DR. MALIK SAID HE SHOULD BE ABLE TO GET THESE SCANS BACK BY FRIDAY AND HE WILL CALL ME. THIS SCAN WILL SHOW ANY TINY INVOLVEMENT ANYWHERE. PRAY FOR CLEAN SCANS!!! HER CHANCES ARE SO MUCH BETTER IF SHE HAS LITTLE OR NO ACTIVE INVOLVEMENT BEFORE TRANSPLANT... THANKS AGAIN TO YOU ALL FOR YOUR THOUGHTS AND PRAYERS!!!

RHONDA

Monday, February 14, 2005 8:20 AM CST

HAPPY VALENTINES DAY!!!!!!!! REALLY GOOD DAY SO FAR TODAY.. SYDNEY IS FEELING FANTASTIC!!!!!!!!! IM SOO PROUD OF HER!!!!! SHE TEACHES ME SOMETHING EVERY DAY. PEOPLE ASK ME HOW IM SO STRONG.. I DONT THINK I AM REALLY ALL THAT STRONG.. I JUST HAVE A STRONG CHILD WITH A WILL TO LIVE. SHE TEACHES ME EVERY DAY TO BE STRONG AND TO BE A BETTER PERSON!! HER SISTER TEACHES ME. SHE HAS HAD TO SACRIFICE AND NEVER COMPLAINS. SHE PLAYS WITH THAT BABY NON STOP. THESE GIRLS ARE MY LIFE AND MY INSPIRATION!!! I DONT WANT THIS TO BE THE THING THAT BREAKS US UP. I WANT THIS TO BRING US ALL CLOSER TOGETHER. I WANT THIS TO BE A LEARNING PROCESS FOR US ALL. IM LEARNING TO BE A BETTER MOTHER, WIFE, SISTER, DAUGHTER. A BETTER PERSON. REMEMBER I SAID LEARNING.. THIS IS STILL A WORK IN PROGRESS, WE ALL HAVE OUR MOMENTS!! I JUST WANT TO BE THANKFUL EVERYDAY FOR THE THINGS I DO HAVE. I AM THANKFUL FOR THE PEOPLE THAT HAVE BEEN IN MY LIFE AND STOOD BY ME FOR YEARS. AND THE PEOPLE THAT HAVE JUST ENTERED MY LIFE, BUT HAVE LEFT THEIR MARK ON MY HEART. I AM THANKFUL FOR MY HUSBAND WHO PUTS UP WITH A HOUSEFUL OF CRAZY GIRLS. WHO ALWAYS MAKES TIME TO GET DOWN ON THE FLOOR AND PLAY. WHO HAS PUT UP WITH ME FOR ALMOST 11 YEARS NOW!! MOST OF ALL I AM THANKFUL TO GOD. WITHOUT HIM WE HAVE NOTHING!!! I KNOW IM BEING SAPPY TODAY. MAYBE ITS THE RAIN. MAYBE ITS VALENTINES DAY.. MAYBE ITS JUST THAT THIS WHOLE THING IS SO MUCH BIGGER THAN US ALL. WE CANT CONTROL WHAT HAPPENS TO US IN THIS LIFE. WE CAN ONLY CONTROL HOW WE DEAL WITH IT. I AM DETERMINED TO TAKE SOMETHING FROM THIS BESIDES PAIN. THANK YOU ALL SO MUCH FOR YOUR THOUGHTS AND PRAYERS. I AM TOUCHED BY THE LOVE AND SUPPORT WE RECIEVE ON A DAILY BASIS.

HOPE YOU ALL HAVE A GOOD VALENTINES DAY!!!!

RHONDA

Saturday, February 12, 2005 5:11 PM CST

Another good day today.. Sydney is feeling really good!!! Eating like a little pig that she is!!! Seems that mommy is getting a cold of sorts today....Really good timing huh?? lol I never, ever get sick!! Lets hope that this wont turn into anything so we can go to nashville as scheduled. Im sure its nothing, like i said i never get sick. Sydney has the sniffles too today. Lets just hope that we have a slight cold and it passes quickly.. Still feel sooo good about her scans...Just cant believe it!!! Its what we've been praying so hard for..Still kinda holding my breath on these other scans, but im gonna try and stay positive. Her chances of being cured are alot better if she is in atleast partial remission before transplant.
Daddy and sissy are gone to a birthday party and weena is here beside me playing with blocks. Gonna try and get some housework done before the messiest of my children get home!!! Thanks for the thoughts and prayers!!! Go Sydney!!!! Go Sydney!!!!! YOU ARE MY HERO LITTLE ONE!!!!

rhonda

Friday, February 11, 2005 5:14 PM CST

Hi all, just a wonderful day all around!!!!!!! I tell ya, sitting here i just feel soo blessed...It wasnt a few months ago that i thought we'd never get this far...Her bone scan came back clean!!!!!!!! NOTHING!!!!!!! I think most of you know, but for those who dont she had lesions down her legs and spine....it is all gone!!!!! her ct scan of chest, stomach and pelvis were clean!!!!! all her lymph nodes are clear!!!!!! We still have a rough road ahead but its soo much easier to deal with when you see an end in sight...Shes one tough little cookie and shes gonna have the last word!!!!! Thank you all soo much for your thoughts and prayers, thats what keeps us going..I'll update again tomorrow. I need some serious coffee!!!!!! we had our third long clinic day this week... i may need a pot!!!!!

love rhonda

Wednesday, February 9, 2005 6:56 PM CST

Hi all. Busy day here today..she had a bone scan, ct scan of chest, stomach and pelvis, an echo of her heart and a hearing test....doing all these pre-transplant tests..she did really good..im soo proud of her!!!! really worried about the scans but its not in our hands..the hearing test did show some high frequency hearing loss but shes really not sure how much yet..she said she could hear normal voices fine..that one chemo is really bad about affecting that high frequency hearing. She just said that they would have to check her again when shes a little older..im really not overly stressed about that right now..Just seems so minor compared to other things.We have to start a 24 hour urine collection starting tomorrow morning, then go back to clinic friday. Her white blood count is still way low 0.28, and her platelets arent low enough to transfuse right now but will probably need some by friday. Her mouth is so horrible i cant bare to look at it, but she is able to eat a little more today. When those counts come up it should start fixing that..All in all she is doing pretty good. That blood she got monday really pepped her up..Alot to be thankful for when you think about how bad it could be. thanks to you all for your thoughts and prayers..

r

Tuesday, February 8, 2005 8:52 PM CST

Was in the hospital for almost 14 hours yesterday. Poor sprout needed blood and platelets. She has zip in the white blood cell department. She came really close to getting admitted because she was trying to run a temp. Dr. Malik was really close to being right when he said she'd be admitted any day now with a fever because of her counts being so low.
He upped her neupogen shots so maybe her counts will start to come up soon. She acted like she was gonna get a high temp today but didnt. Lets hope that she gets her counts up soon so she can fight off anything that comes her way..
Going to hospital tomorrow for ct scan of chest, stomach and pelvis and an echo. PRAY PRAY for super clean scans!!! We want this cancer gone!!!!!! love you all and thanks for the thoughts and prayers for our little angel!!!!

Monday, January 24, 2005 4:23 PM CST

Sydney is doing great today!!! eating like the little piggy that she is!!!! enjoying life!! WE will be going in on thursday for her last chemo..She should be there till sunday or possibly monday..Life is good in the Dudley household!!!

Monday, January 24, 2005 3:50 PM CST

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