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Monday, October 22, 2007 7:54 PM CDT

Been awhile but wanted to give a quick update.

After a serious of jobs I finally got a job at Jackson Lab, the biggest research library using mice in the world. I am soooo happy and proud to be part of this, because I will be in some small part a team member in helping save someones life. I started today and am thrilled, its more than a paycheck, the reward is great.

Second I contacted the governer in my state to make a speciality lisence plate for childhood cancer awareness, I will need 2000 signatures and 25 dollars from each person saying they are committed to getting this plate made. I know I can get this done and do something to honor all children who suffer from this disease, they must not be forgotten.

Third, I am establishing a fund raising committee to raise money for a Alexandra R. W. Conley resource library at the hospital in Bangor for parents to get info on there childs cancer because it is so overwhelming to find all the help you need.

I thank you one and all for coming here, Lexie loves you, we love you. Maybe I will have more time to update more frequently now with working a more normal hour job.

Thank You
Roni and Jae

Monday, December 18, 2006 8:28 PM CST

Im sorry I havnt updated in a bit.....been busy i got a job
working at dunkin donuts.......sorry about those websites.. thats so ignorant....ty for the poems, made me cry because they are true. I left a pic of Jae on here in her princess dress. TY you all, and Have a merry christmas

Love
Roni and Jae

Tuesday, December 5, 2006 6:04 PM CST

Hi all, sorry havnt updated in awhile, but I know you know I'm horrible at that LOL. Jae is doing ok in school and we are working on her dress, shes changed her mind like a hundred times LOL. Christams is coming and soon it will be there birthday, im happy when this is over.....not alot more to update on......pretty much all going the same. I deleted the bad site, seems this has been happening alot lately. some people are ignorant and have no respect for kids let alone the dead.....Its cold up here, wish i was down south......Thanks for the poems, keep them coming I love them.

Love
Roni and Jae

Thursday, November 23, 2006 12:55 AM CST

HAPPY THANKSGIVING EVERYONE!!!!! Added a new pic of Jaedyn, her great grandmother took her to sears and got them done recently, I am buying her a Cinderella dress and am gonna have her pics taken as well soon. She wants this dress and it is gorgeous, and she will have it because she wants it....but when she gets married, I dont wanna buy her dress, this girl has expensive tastes---LOL I wonder who that comes from...We have had a great thanksgiving Ive only cried like once today so far, weird looking across the table and there be only one----its killing me, its not right, she should be here. I think we all struggle with the fact of is she happy, is she missing us, and Im thinking that my baby is up there missing me, I know its not true but we can tear ourselves apart by what we think and imagine. Im giving myself a break though---its ok to fall apart because shes worth crying over. Hope your thanksgiving is special and blessed.

Love
Roni and Jae

Thursday, November 16, 2006 9:03 AM CST

As always I'm always trying to help out a kid, who needs prayers or help in anyway. This little girl who has Neuroblastoma has been brought to my attention...She needs your prayers, shes not in a good way but we ALL should still have hope that she may be the lucky one. Lexie would want us to remember all the kids who needed help, This program below is a program set up just for the cause of finding the cure to Neuroblastoma---we all know not enough funding goes into childhood cancer, a fact that I am bitter about....Just thought this was something I would bring to your attention, if anyone wanted to help....

The Giving Tree


This year, Lunch for Life is getting into the holiday spirit! Thanks to the efforts of CNCF and an anonymous donor, your giving will translate not only into desperately needed research dollars, but also into gifts that will brighten the lives of these children. And one child will receive an all-expenses paid dream vacation to Walt Disney World, with the help of some incredibly generous donors.

Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation has three effects: 1) the tree of your choice receives 1 ornament for every $5 you donate; 2) every donation generates a Giving Code which can get you bonus ornaments when your friends type it in; and 3) each ornament placed on a child’s tree creates one entry for that child into our Disney World giveaway. For example, if I donate $15 to a specific child’s tree, then that places 3 ornaments on his or her tree, creates 3 contest entries for that child, and generates a Giving Code for me to pass along. When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again. For each present, the family can elect to receive one of several donated prizes for the child (including board games, stuffed animals, a gift card to Toys R Us, or even the ability to turn multiple presents into a portable DVD player or other bigger gift).


Remember, now your lunch money can help save these children’s lives by funding scientific research on Neuroblastoma, while also bringing smiles to their faces with their own virtual trees and real presents. Please help make these holidays special for these wonderful children in need.

https://www.lunchforlife.org/donate.aspx

Enter the code: 19257 to double Eden’s entries in the contest

So click the link above and donate in honor of EDEN ADAMS. Help raise money to find a cure and send a child to Disney…maybe Eden will win the trip, but all of the children with neuroblastoma will win when the cure is found.


Also I updated the pics....Roni

Wednesday, November 15, 2006 6:39 PM CST

I know I havnt updated in a bit.......I dont come to this page often....Makes me sad, when I read about the whole process and think we had so much hope....always had hope. I miss her sooooo much, somedays its so hard to breathe, but I'm remembering more of her funny moments and not so many of her dying moments, although those will stay with me forever.

I thank you all for still being here and supporting me and Jae through this.....I appreciate it very much.

Heres some pics of her stone, and also updates...Jae is doing well, and we are finally bonding....God thats hard, I know the Lexie now would be happy that me and Jae are bonding but the Lexie we all knew here would be mad....she told me a few weeks before she died, Mom do not get a boyfriend or a husband, your mine, ALL mine, I said what about Sissy, shes like no Nana can have her....Your MINE. I bought her this ring, it was too big for her, but she wanted it, it had and angel engraved in it and I told her There, We were married, I wouldnt marry anyone else.... I wear that ring now on my left finger. she wanted to buy me a ring for Mothers day to symbolize her being married to me...she never got around to it, but she told me Mom go buy something that you want for mothers day and it will be from me. I went and bought this necklace that has a ring on it and it says love all the way around it....I came back to the hospital and showed her and she was so grumpy and said I guess if thats what you wanted then its from me...days later she said she was glad I got it cuz it said Love on it and she said her phrase that she said so much at the end, Mommy I love you forever.....God I miss her.

Other than that, I think I might have a job, its a starter job but ya know its easier to get a job when you have a job. The college is on hold at the moment, thinking of waiting till next fall, but I will do it. I would be wasting my knowledge of medical stuff if I dont.

So thats about it.......Love ya guys, thanks for the poems, they make me cry hard but Im learning that helps....

Roni, Jae and ANGEL Lexie

PS. Will upload pics of stone Tommorow...cant find em right at the moment......sigh

Friday, October 20, 2006 10:08 PM CDT

Words from an Angel"

I have not turned my back on you,
So there is no need to cry.
I'm watching you from heaven,
Just beyond the morning sky.
I've seen you almost fall apart
When you could barely stand.
I asked the Lord to comfort you,
And watched Him take your hand.
He told me you are in more pain,
Than I could ever be.
He wiped his eyes and swallowed hard,
Then gave your hand to me.
Although you may not feel my hand
Or see me by your side
I've whispered that I love you
While I wiped each tear you cried,
So please try not to ache for me
We'll meet again one day
Beyond the dark and stormy sky
A rainbow lights the way.

A poem remembering Lexie

Wednesday, October 18, 2006 11:29 AM CDT

Theres nothing really new to update on here. I am trying to get a life but its not really working well, guess I'm gonna be taking some big steps soon, trying to get support and direction and am getting alot of it from my friends. Jaedyn is doing well in school ans she still talks alot about Lexie, guess that will never change. Thanks fro all your support throughout Lexie's life. Angel mail is coming fine Angel Sharon, Jaedyn loves it. Thanks so much.

Roni

Tuesday, September 26, 2006 2:57 PM CDT

Well School is going great for Jaedyn, shes having trouble with reading and is in a special class, she gets homework which she hates and wants me or mom to do it, its horrible to feel like that in first grade, but I think this is gonna be a tough year on us all.

As for me I'm still working on getting funding for school. I'm having a friend of mine find the proper resources so we will see if it all works out, I am anxious and would like to start in January.

The apt is ok, just wish there were jobs around here. But its good, I get to visit with one of my best friends almost every night. Takes my mind off things.

Sharon you can send her angel mail to my PO Box 584 Lincoln ME 04457. I'm so glad you had a dream of miss diva girl, shes making her rounds, we will never forget her.

Lenzie's Grammie Im loving the poems, they make me cry but thats not a bad thing.

To everyone checking in Thank YOU, You all mean the world to me and it lets me know Lexie still lives on.

Thank you all for praying for Miss Christi, the little girl that i had on this site, Shes a hero and she fought the toughest battle. SHes with Lexie now.

September is childhood cancer awarness month so lets keep these little fighters in our minds, hearts and prayers.





heres a Lexie video!!!!

Get this video and more at MySpace.com

Monday, September 11, 2006 9:16 AM CDT

Welcome back Angel Sharon. I'm glad you got the pic, I'm glad I finally found it. I havnt had another siting of Lexie yet but you know her she wont stay quiet for long. The apt is ok still trying to rearrange stuff, throwing out stuff, giving away stuff. Jaedyn is doing great in school, she is having trouble with reading but hopefully she gets the help she needs. I'm still looking for a job but its not easy, I live in a bad area. I have been accepted to college for Medical Lab Technician so now its trying to find the time/money to go. But its something I really want. I'm gonna post the newest pic of Jaedyn and me and post some other pics Ive found of Lex. You all take care, I love you and keep the poems coming, they are great.

PLease keep Christi in your prayers and her family!!!
Hey guys! I've created the page Say A Prayer For Christi with Felicia (of Banners of Hope)...everyone should add it! Plus, tonight we are having a prayer vigil for Christi. Please, wherever you are at 8:00 tonight, stop and say a prayer for her as long as you'd like.

-Jennifer
Kids Cancer Crusade

A prayer vigil for Christine Shayna Thomas
12:00pm & 8:00pm September 11, 2006



As you all know, Christi is having an especially difficult time right now. Her chemotherapy treatments have been stopped and her family and hospital(CHOP) are working on a plan to bring her home and begin hospice care.



Christi was diagnosed on September 11, 2002 - 4 long years ago. She has never been in remission and has been on constant treatment since.

Her treatment has consisted of: 26 ½ rounds of chemotherapy; 4 rounds of (very painful) 3F8 antibodies; 2 high dose MIBG (she was in isolation and everything she touched was discarded as radioactive waste); 1 tumor resection surgery (full resection); 4 rounds of Accutane; 2 stem cell rescues; leg radiation and full brain radiation.





Please join us in this prayer vigil. Wherever you are at 12:00pm & 8:00pm please take a moment to say a prayer for Christi.

Urgent Prayer Requests:
-That her pain ceases
-Tumor reduction shown on the CT
-Lower LDH
-Strength for her loving parents, Shayne & Angela and her beautiful little sister, Shayla
-For her sweet little soul



Christi's MySpace
Christi's Website
Christi's Blog

Monday, September 4, 2006 9:16 PM CDT

EVERYTHING IS GOING OK. ADJUSTING TO THE MOVE, SETTLING IN. MISSING LEX BUT I FINALLY HAD A DREAM ABOUT HER, I SMILED ALL DAY. SHE WAS GETTING HER HAIR DONE SO ITS GREAT TO THINK SHES UP THERE STYLING WITH HER NOW LONG HAIR. JAEDYN IS DOING WELL IN SCHOOL, SHE WENT TO THE FAIR.....WITHOUT HER SISTER BUT SHES DOING GREAT. ANGEL SHARON I FINALLY FOUND THE PIC YOU WANTED, FINALLY LOL.

PLEASE KEEP THIS LITTLE GIRL IN YOUR PRAYERS, SHE IS NOT DOING WELL AND WE ALL KNOW WHAT A BEAST NEUROBLASTOMA IS.

Praying for a miracle...

Tuesday, August 15, 2006 7:51 AM CDT

Hi everyone, yes school is coming right up, where did the summer go? Jady is a first grader now. Shes looking forward to it. Shes in counseling now so hopefully every feeling she has gets worked through. Still adjusting to life without Lex. Its finally hit me and I miss her so much. I ordered her stone a couple weeks ago, its gonna be beautiful, I will post pics as soon as it comes in and is set. All my pics are packed up so i cannot post any different pics of Lex right now but I will soon and will take some of Jae also.

Heres a story about a little boy also with Neuroblastoma who is in awful shape. Please keep in your prayers.






Jaret C. is still in need of many prayers. Bumps have developed on his head which they know are tumors but because of his condition treatment cannot be done. Please pray for a miracle for this little guy!!

Tuesday, August 1, 2006 10:55 AM CDT

I met up with a woman today that is having such a hard time with Lexies death, she was crying, saying how mad she is at God. Shes a cancer survivor and wishes God had taken her. I found myself comforting her. I told her im confused with why God took her but Im not mad at him and that it wasnt her time thats why shes here. Some are chosen to be here and some are so special they are chosen to be there. She said if you can feel like that and its your child how do I have the right to complain? None of us should. Keep in mind she is a Chosen vessel, very very special. Ive felt guilty of being alive and I said yeah theres things I can do that she cant anymore, like watch a movie and go out to eat, but she is doing things I cant, seeing my dad and my brother and theres a woman who was my moms friend and she died when I was a kid, she was always there for us when she was here and I know she is there watching over Lexie now. I did everything I could for her here, now shes looking over me making sure I get there with her. I love you all.

Roni

Thursday, July 27, 2006 9:14 AM CDT

Well its been a month without you Sweets. I miss ya so much. I think abot ways to try and have you back and beg God for it everyday---come back, not in pain. I miss my best friend. I love you forever------Mommy

Monday, July 24, 2006 11:25 PM CDT

I miss her like crazy sometimes but Im glad I have known her to miss. Trying to think of ideas to keep her legacy going but havnt figured what or how yet. She needs to benefit the world even though I think she has already.

Theres a little girl age three that Lex met and she has Leukemia and it seems her treatmenst keep getting stalled because of no counts keep her in your prayers please, her mom worries, her name is Julia.

Theres a boy, Greg who is in remission from lymphoma please keep him in prayer that it stays in remission.

And Lexs best friend Justin, he cotinues to do well and she always worried about him. Its been a tough battle for him( he got diagnosed two days before Lex and her death was hard on him but he is cancer free now so I know she would want us all to keep him and all children in our prayers.

Jaedyn is doing well. Proud of her.

Love to you all
Roni---Lexie the HERO's mommy

Tuesday, July 18, 2006 9:54 PM CDT

The sparkle in her eye, the sunshine in her heart,

each of us loved a different part.

The way she always found the right thing to say,

her life was special each and every day.

The strongest of minds, a touch so kind,

a strength most of us could never find.

She may be out of sight, but she didn’t travel far,

for in the night sky, she is our bright and shining and star.


A poem a found that sums up Lex!!!! Lenzie's Grammie does such an excellent job finding them I hunted around till I could find one too. I love you all. Its been so hard without her, its all effecting me now. I miss her sweet face so much. Jaedyn is doing well, Im glad. Its just mommy finds it so miserable to have lost her best friend. I will get through and I have Jaedyn to be my best friend now. Thank you all for coming to this site.

Monday, July 10, 2006 7:56 AM CDT

I thank all of you for coming to her site still. It seems weird to not have anything to say about her anymore. I will continue to post photos of her and of course Jaedyn as she grows and we see what might have been through her.

I found another child who died the same day, same time and same disease as Lexie. Its heartbreaking but to know they are together discussing everything now is a comfort.

Im doing ok as well as Jaedyn, just trying to find a life now. Being with Lexie was intense beyond what I realized. I feel such a huge void because I miss her but also because of the things we were doing. I love you all. Please keep coming here, and keep in contact. Your all my family now and Im so happy that I shared Lexie with all of you.

Roni

Saturday, July 1, 2006 11:28 AM CDT

Thank YOu all for your comments. I miss her but I'm so happy for her. Shes the lucky one. Up there without the headaches of life we have. I'm proud to be her mommy. She showed courage, strength but most of all LOVE. All good lessons. I have no regrets with how things went. I know me and her did everything we could. I love you my baby forever----Peace till I see ya again.

Roni

Tuesday, June 27, 2006 11:50 AM CDT

Lexie died at 6 this morning. Her funeral will be on Thursday at 1. I will update more later.

Wednesday, June 21, 2006 12:20 AM CDT

Lexie wants to go home!!!! Its a big leap of faith here but Im taking her home. Her liver is enlarged, we do not know why, shes not even herself for the past two days. Keep her in your prayers that God will give her a miracle. I HAVE NOT GIVEN UP!!!!

Tuesday, June 20, 2006 5:29 PM CDT

Well Lexies day has gone ok today, she has slept most of the day away because of the pain meds, she seems to really like the feeling. Waiting on when I can take her home and I WILL TAKE HER HOME!!!! I truly believe mind soul and body that God has this all under control and when his time is right he will perform the miracle he has promised. Go Jesus!!!!!

Love
Roni and Lex

Monday, June 19, 2006 5:59 PM CDT

Lexie had a bad day today. in some pain and kinda cranky. Keep her in your prayers. She will win this, With God all things are possible.

Sunday, June 18, 2006 4:42 PM CDT

Lex is having a better today. Shes in pain some but doing much better and actually talking and EATING up a storm. Still praying for a miracle!!!! Go Jesus

Saturday, June 17, 2006 8:37 PM CDT

Lex is still in the hospital. It was a crazy nigt last night. She was hurting really bad in her belly. Up most of the night trying to help her, igure out the problem. Well we x rayed her today and she was highly constipated, and lets just say the problem has been dealt with. Shes still in pain but its not so much in her belly now. This is one of her bad days. I'm just asking everyone, please pray, please pray i can continue to be strong i feel so weak. Please pray that God sends her some relief. We need a miracle. Help me God to let Let go and Let YOU do what we ALL know You can do and WILL. Lets all be a cheerleader to Jesus and give him a big nationwide GO JESUS!!!!!!!!!

Love ya
Roni and Lex

Thursday, June 15, 2006 6:44 PM CDT

Lexie is in the hospital because her calcium is high. So she is getting medicine to bring it back down. We are expecting and WAITING for our miracle although its a struggle we know God teaches patience in his own way!!!! Love ya Keep storming heaven with prayers!!!!

Sunday, June 11, 2006 3:27 PM CDT

Lexie is still having good and bad moments. Found out that she is addicted to her pain meds. Mostly she likes to be alone and only wants me to be around and we have really good moments. Keep her in your prayers please.

Saturday, June 3, 2006 9:48 AM CDT

Lexie is having her blood work so I thought I would pop in and give an update.

Been doing alot of praying. Thats all we have. Thats all we need. I am gonna speak bodly and say Lexie is healed in the name of Jesus. She isnt taking as much pain meds and her pain isnt as bad. She is eating and drinking a little more. Moving around being a little happier. People we are seeing a miracle. There seems to be a spirit of depression around both of us though. So please keep her in your prayers. I thank you

God Bless
Roni and Lex

Friday, May 26, 2006 3:53 PM CDT

Lexie is in the hospital getting blood right now. Its been a long day. She got platelets earlier today and she had a bad reaction to them. Hives, coughing, something she really didnt need. The Drs in boston have come up with two chemos to give her but it is chemos she has had before. The cancer is spreading rapidly. She is so full of it, but I still believe that God will pull her through this. She has a purpose and its not yet fulfilled. Please trust and pray with me for a miracle.

Love
Roni and Lexie

Wednesday, May 24, 2006 7:17 PM CDT

I thank you all for your prayers at 7. Lexie prayed and asked that all the kids that are sick in the world be healed---God she just touches my heart. Her pain seemed to subside then too. She says she doesnt know how to believe but she knows God can make her better, thats alot of faith, No matter what they say, please do not give up on her, when man gives up, thats when God begins.....Love to you all....Peace

Roni and Lexie

Tuesday, May 23, 2006 3:53 PM CDT

Lexie is going to Boston tommorow. SHe is having an MIBG scan to see where the cancer spots are. I'm asking that everyone Pray for her at 7:00 p.m tommorow night all at the same time. When I get back from Boston I will let you know what the scan says.

Love ya and Peace
Roni and Lexie

Sunday, May 21, 2006 10:31 AM CDT

Lexie may be getting out today. Her blood is not working well, its hard for her to make new cells, she is having pain still but nothing like it was. All we can do now is stand on Faith that if she is to be here that she will. I believe she is supposed to be here. The number of lives she has touched is amazing. SHes like a little celebrity. She told me last night she doesnt want to die. That she will keep fighting. We cant give up now if she wont. Please keep her in your prayers and thoughts. Theres a rainbow for her somewhere. Lots of love!!! Peace

Roni Lexie and Jaedyn

Thursday, May 18, 2006 7:27 PM CDT

Lexie had a cat scan, nothing showed up differently on that. We did however get back some urine tests and they show an elevation in indictaors of neuroblastoma, so thats is our answer. It has spread. Although it is not in any organs it is quite involved in the bones. Just waiting from Boston as what to do next. Keep gher in your thoughts and Prayers PLEASE!!!! Loves and Peace!

Love
Roni, Lexie and Jaedyn

Wednesday, May 17, 2006 10:01 PM CDT

Lexie had an MRI today there are places that are looking like cancer spots. Major setback for Lexie because I thought the MIBG treatment was working for her. We sit and wait and hope to hear from Boston as to what they plan next. The battle is not over!!!!! We are needing a rainbow right now. Please keep her in your thoughts and prayers.

Love
Roni, Lexie and Jaedyn

Sunday, May 14, 2006 11:47 AM CDT

Happy Mothers Day!!!!! To all the moms out there!

Lexie is still in the hospital, still in pain but hopefully we will be able to go home soon. I cant wait till she sees the lake she will be so happy. Poor kid hates changes so this past month has been very hard on her. These past 3 years so much has happened and changed, i cant say im happy either with change but its gotta happen. Thanks for all the thoughts and prayers. My sisters next door neighbor brought her a stuffed unicorn the other day, that means alot but my friend Ron brought her a stuffed kitty, elephant and roses. You know the diva she loves to have attention and he gives her so much. Its so awesome to see how happy he actually makes her. She needs that!!!! I appreciate it from the bottom of my heart. Love to you all, I cant imagine going through all this without you. Peace!!!!


Loves
Roni, Lexie and Jadybug

Friday, May 12, 2006 7:11 PM CDT

No news today. She did have some x rays but we havnt heard the results yet, she seems to be in better spirits today which is a good thing. Shes a little Diva though, so so demanding but its cute. Hopefully we will know more in the next few days. I will keep this updated (try anyways) Love ya all........PEACE

Roni, Lexie and Jaedyn

Thursday, May 11, 2006 7:49 PM CDT

Okay I'm sorry to not be updating. Lexie is still in the hospital. She is in pain again tonight and has a 102 temp. Dont really know whats going on with her but hopefully I will have some answers soon. Angel Sharon lease do not send to the old address just because they will start sending everything back. I have a P.O. box I just cant remeber the number right this minute but I will email it to you shortly. I need to update her chemo angel file also. Thanks for all the prayers and thoughts, it means alot.

Love
Roni, Lexie and Jaedyn

Thursday, May 4, 2006 9:25 AM CDT

Lexie just got back from an overnight hospital stay in Boston, she recieved her stem cells. We will know within two weeks if they are working, shes been going to the hospital and getting transfusions almost everyday. SHe is doing great still so full of energy. Keep her in your prayers please.

Monday, April 10, 2006 8:49 PM CDT

Sorry about not updating. Lexie went to Philly last week and came back Thursday. She is now in EMMC with a bad cold, dehydration, and possibly an ear infection. That and she wont eat on top of it all. I know the cold has made her miserable, because it sure did me when i had it at its worse. So this is where we are and probably will be for the next few days unless i can get her eating which with lexie I would have better luck taming a lion. SO keep her in your prayers and we should now within the next month whether the treatements in Philly helped her or not. Peace

Tuesday, March 7, 2006 7:56 AM CST

Lexie had a bunch of tests last week. Bone scan was normal, CT scan is normal, X-rays are looking like possible bone healing where she broke her leg and the marrows are not in offically. But Lexie is doing well, doing irish dances----this kid is crazy-----Shes gone to school a little but cannot this week due to her white counts dropping. We shall be heading back to Philly soon though. Keep her in your prayers. PEACE

Monday, February 13, 2006 4:00 PM CST

Lexie is doing good just running back and forth to hospital for blood checks. Shes not supposed to be putting weight on that leg but alas you can't keep a good kid down. Glad you all like the pics. When i find a minute I try to update but sometimes time gets away from me. Keep her in your prayers.

Monday, February 6, 2006 8:55 AM CST

LEXIE came home on Saturday. She is doing well and glad to be home. Keep her in your prayers please.

Sunday, January 29, 2006 7:50 PM CST

Lexie and me are still stuck here at the hospital. SHes doing much better but still has to take all meds through the 14 day course so it looks like it will be another week. I'm going crazy!!!--LOL. Lexies leg situation hasnt really been resolved yet. The surgeon is unsure what to do to fix the problem so hes calling around to find out the best solution for Lexie. Well until next time.....Peace!!!

Dr. J----We will miss you!! EMMC and the clinic wont be the same

Wednesday, January 25, 2006 5:58 PM CST

Lexie could not go home today. Fever came on last night which tells us that she has a secondary infection. Also a screw in her plate in her leg has eroded. SO they will have to give her another surgery to fix that. Please keep her in your prayers.

Sandy---Thanks soo much for the blanket. Lexie loves it. Sorry I wasnt here. I miss you and hope everything is going well.

Tuesday, January 24, 2006 9:54 PM CST

Lexie will be going home tommorow. I'll be so glad to finally be in my own bed and I'm sure Lexie is looking forward to going home too. We miss Jaedyn so much because now it has been over a week since we have seen her. Jaedyn was so scared when she found out about my accident she asked my mom if we were dead--this is something that weighs heavy on her head and has for the past two years. I just wish something would change so we could all be a family again together with some sense of normalcy. On another note I bought a car last night with the help of my mother. I had a 2002 Suzuki XL-7 and it was four wheel drive and where I was in that accident and the only thing that got hurt was the car I figured why not get another one. So I am now the owner of a 2005 XL-7. I like the four wheel drive which in tyhe accident I had previously it wouldnt have helped anyway but when its snowy I feel like I can get around better. Hopefully I will be able to stay off the icy roads. So We are all doing well, tired but well.

until next time...........peace!!!

Sharon I havnt recieved my angel check in could you tell me how to let them know I havnt recieved it and I will fill it out as soon as possible. Love to you!!!


Ronette, Lexie and Jaedyn

Saturday, January 21, 2006 6:53 PM CST

We made it back to Maine. We have stopped at the bangor hospital basically because she isnt feeling well at all. They are hydrating her and checking to make sure she doesnt have any infections. Its been a rough time for her lately I'm sure she is sooooo run down and taking medicine taht makes her sleepy on top of it. And her leg is causing her alot of pain also. Please keep her in your prayers till next time................PEACE

Thursday, January 19, 2006 1:00 PM CST

Lexie is doing ok with her treatment she is isolated and bored-----her normal stay at a hospital lol. She was at a radiation level yesterday at 33 she has dropped to 10 which means tommorow she should be at the 7 they want her at to discharge her. We will be just going to Boston because I do not want her stressed out on this long journey home. Please keeep her in your thoughts and prayers. Until next time.......PEACE!!!!

Wednesday, January 18, 2006 4:07 PM CST

We are in Philly since 1 oclock yesterday morning. She started her MIBG treatment today and basically now we just wait for the radiation to leave her body. It shouldnt take anymore than three days. Everything is going ok. She has been having pain in the leg that was operated on but I think some of that is due to the long 11 hr trip she took to get here. When we leave to go home we are stopping in Boston to rest overnight and then we will travel on to Maine. Eveyone is good down here. She hates it but I could say that about every hospital shes been in. Philly isnt as big and scary as NY and Boston have been partially due to the fact that the hospital is a huge place on a big campus so we are not overwhelmed by big buildings all around us which makes it nice for her too look out her window and see sky. She sees the train go by and she says its heading to Maine because it always goes by the hospital up there too. So all in all we are just waiting to head home again and then hopefully get a little break from all the running. Until next time PEACE

Friday, January 13, 2006 1:38 PM CST

Its my 32nd birthday today. Glad I'm still here. Me and Lexie was returning home from Boston on Wednesday and had an accident. We hit black ice and rolled my vehicle. No one was hurt thank God but he certainly was there. I was not buckled (I forgot to) Lexie was sleeping so thankfully she slept through it all. My car is now totalled so thats my major setback other than hurting from this accident. We are to be going to Philly on Tuesday. Wish us luck and no black ice please.

Love
Ronette, Lexie and Jaedyn

Monday, December 26, 2005 7:26 PM CST

We are in the hospital Lexie has been very sick for a week throwing up. She had a very good Christams. Thank you to all of you out there that sent gifts. Its been hard finding time for anything right now just been right out straight with her lately. Please keep her in your thoughts and prayers.

Wednesday, December 21, 2005 11:43 AM CST

Lexie is in the hospital today. She had a fever last night but is doing well now. She is getting chemo this week and has been throwing up everyday. Please keep her in your prayers. She has got to win this.

Thursday, December 8, 2005 6:37 AM CST

Went to Boston and Lexie had her MIBG scan. She has more cancer in her bone. On both sides of her hips, in her lower left leg, possibly in her chest, and a few spots in her skull. They are going to be given her MIBG treatments in Philly. They say this isnt going to be a cure for her but we have no options left. Keep her in your prayers.

Sunday, December 4, 2005 7:49 AM CST

I'm so sorry for not updating. We came home for thanksgiving spent it in the hosital getting chemo. Right now the plan is to give her chemo till something new comes up because there is nothing else available right now. We have to go to Boston for testing again Tuesday because we went last tues and they didnt give us the right perscription. So this week it will be right. Long trip again.


Other than Lexie is doing FINE!!!!


Thanks for the prayers

LOve
US

Thursday, November 17, 2005 2:31 PM CST

Lexie and I are going to Boston Tommorow. Going to Dana Farber/Boston Childrens hospital its just right now a "get to know you" meeting and then they hope to start treatments on Monday. They havnt decided as of yet what study she will be involved in but there is hope that there is still something out there. Come to far to give up now!!! Please keep us in your prayers. Look for rainbows cuz we need em.

Love
Ronette Lexie and Jaedyn

Thursday, November 10, 2005 1:44 AM CST

We have been home for awhile (sorry about not updating) We have been running alot for tests and things for awhile.

She is off the study because they do not feel it was benefiting her and because now with her leg broken and the plate in place its hard to get a picture of the area that the tumor was in and in order to be on this study you have to have clear evidence that its actually working and they cant do that now. So the plan is a new study that can take place in Boston Phillie or Maryland. The dr is pushing for maryland so that may be where we are going. I dont think this study is right for her so Im investigating some other options. This study is for other cancers not even for the Neuroblastoma and I guess they have only had 5 kids do well with it so I'm gonna check out some stuff.

She is walking some but it hurts her still (to be expected) She is a great little kid that doesnt give up. She deserves the best and I will find it for her if I have to. Trust in God, thats the best medicine. Please keep her in your prayers and could you pray for her buddy Justin who is still having a rough go after his bone marrow transplant nearly a year ago.

Thanks
Ronette, Lexie, and Jaedyn

Thursday, October 27, 2005 4:01 PM CDT

Lexie is still in the hospital recovering and being really demanding. Her leg is healing because she is using it without even realizing she is but she is scared to stand on it so its a fight to get her in the wheelchair everyday. She may come home Monday---I can't wait.

Her biopsy results: There were fewer cells than previous sample, most were dead and those that were not dead looked sick so it looks like this new treatment is working. We are hoping we can stay on the study but we are unsure because as a requiremnet she has to have CT scans and MRI's and those are impossible now with the plate in place. Pray they keep her on the study because even though its been super hard on her it has been effective.

Thanks for the Jammies Sharon they are awesome and my address is the same for now I will let you know when it changes.

Love
Ronette, Lexie and Jaedyn

Saturday, October 22, 2005 9:52 PM CDT

Lexie is in the hospital once again! Her leg fractured I believe on Thursday. She had surgery Friday night and they put a plate in to fix it. She is emotional and in pain as to be expected. God sometimes its hard to watch this happen to her again. They took a sample of the the tumor also and we will be getting results possibly by monday I am hoping and praying that its dead and I know all you are too. Thanks for all the support.

Love
Ronette, Lexie and Jady-bug too.


Happy Birthday 36th birthday to you Russ---your baby sis misses you and wishes forever you were here.

Wednesday, October 19, 2005 8:17 AM CDT

We are home!!! Lexie took her meds and is taking them at home now. We had a little go round last night but she is being good all the other times.

Sunday, October 16, 2005 7:13 PM CDT

Well Lexie is still in the hospital. C-Diff came back but she is doing lots better, just wont take her medicine very well but her cousin Kody maybe convinced her to take the meds by mouth so she can come home. We'll see.

On other fronts we are planning a "Pajama Party" for Lexie. Where if anyone wants to give Jamies to Lex where she is in the hospital and in nighties 24/7. Course Jaedyn wants in on it too so its kinda for both of them. Its an idea I thought up and honestly think it would be good for any cancer patient because they live in the hospital so much and everyone wants to feel pretty.

I wanna thank you all for the prayers it means so much and its really working. I appreciate you all from the bottom of my heart. Love to ya all.

God Bless
Love
Roni Lex and Jae



Happy Birthday to my Dad----I miss you Daddy Love your little girls

Tuesday, October 11, 2005 1:27 PM CDT

Lexie is in the hospital ghetting her next infusion. Everything for the most part has gone ok. She had a little shaking episode last night and a fever but she is fine. Her limping is gone and shes not using the walker. So thanks for all the prayers.

Saturday, October 8, 2005 10:09 AM CDT

Lexie has had a setback. She started limping last monday after school. She is now using a walker because where the tumor in in her leg is threatning to break a bone. Trying to keep a five year old down is not easy. She will be starting her treatment on Monday. Please everyone pray that this will work for her. Prayers work and she needs them. She will be getting a plate put it her hip to reinforce the spot thats threatning to break. Thanks everyone.

Love
Ronette, Lex and Jady

Monday, September 26, 2005 9:20 PM CDT

WE ARE HOME!!!!!!!!!!!!!!!


Lexie got out today. She is doing great and ready for school again. Sorry cant post much its time for bed.

Friday, September 23, 2005 6:06 PM CDT

Lexie has got back a negative on her infection now. So she is finally in the clear. We are in the hospital till Monday or Tuesday for her to finish the course of medication. Thank you all for your prayers, your support, your gifts everything. We appreciate it alot. We are both looking forward to going home and preparing again for the next round of treatment so please pray that goes smoother.

Thanks
Ronette, Lexie, and Jaedyn

Tuesday, September 20, 2005 7:45 PM CDT

THIS JUST IN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Her CT scan came back showing that everything was back to normal that the apparant damage done to her colan seems to all be gone. She also had fluid on her lungs and in her stomuch and that is now gone. We all know who to Thank and I thank all of you for praying her well-----you can all be happy that you are taking part in making Lexie well. Love to you all

Ronette, Lexie and Jaedyn

Tuesday, September 20, 2005 2:58 PM CDT

Nohing really new to report today except that Lexies mood is continually getting better.

She had a CT scan today to see if her infection has improved and we havnt heard anything back yet so keep those prayers going.

Lots of Love
Ronette, Lexie and Jaedyn

Monday, September 19, 2005 3:17 PM CDT

Lexie had a slightly better day today. She is in better spirits and is actually talking more.

We played Go Fish and Guess who alot today she is really into games now and they do occupy her mind while she cant get around much. Thank You so much Becky and Merlon for the Bratz cat she was sooooo happy!!!!!!! She said this is like christmas or my birthday I warned her to not get sick just because she has got new toys but little Lexie's mind was probably already thinking of ways to get more stuff. She just cracks me up and I am glad she is actually doing that again because those three days of her being so down really felt like a lifetime.

We havnt heard whether the medicine has taken affect on her infection but if better spirits are an indictation then she is getting better. So thank you all for the prayers and thoughts and Becky and Merlon for the cat. Lexie and I appreciate you all so much.

Love and many thanks
Ronette, Lexie, and Jaedyn

Sunday, September 18, 2005 6:03 PM CDT

Well today has been a little better. Some of her body is returning to normal from the treatemnet she received. She has an infection called C-Diff its an infection in the large intestine. She now has a tube in her that they put in last night to get the medicine to her. I hope and pray that it makes a difference because this infection is pretty bad. She is in slight better spirits. "Retail Therapy" is the way to any girls heart---lol. I got her a bratz pony because thats what she has wanted the most and I'm still lokking for a kitty because she is crazy about cats right now. She cheered up when i brought that to her and I bought her a new nighty because thats what she likes to be in while in the hospital. It has a blindfold so she has been quite the little diva while she sleeps she has the blindfold on its very cute.

She perked up and said Thank You Mommy I love you and you are the best. That means alot when this child has gone to the depths that she has in the past few days.

When she woke from getting the tube down her throat she cryed held on to me and said Mom I dont want the cancer no more please take it from me. Broke my heart cause God knows I would jump on that in a second if i could. Please keep her in your prayers and thoughts. She needs most from God is some strength so please ask for just a smidgen of his to give to her. Look for rainbows but I can tell you all SHE WILL MAKE IT!!!!!


XOXO
Love
Ronette, Lexie and Jaedyn

Saturday, September 17, 2005 3:29 PM CDT

Lexie got through her final night of the new treatment she had an allergic reaction to something not sure if its antibiotic or the actual drug.

Onto the next prob. She has an infection in her gut---very serious one. Where it may be a problem or it could turn life threatning. Please pray her through this she has been very emotional and actually to the point where she has given up. Shes refusing most of her meds even knowing she can die. Shes battled so much I'm sure she is tired of it all. Please pray thats all that will help her now.

Thank You
Ronette, Lexie and Jaedyn

Thursday, September 15, 2005 6:57 PM CDT

Hi a little update on Miss Lexie

We came into the hospital on Tuesday with a fever. Got that under control----its a staph infection caused by a splinter---then we started the new drug therapy obn Wednesday. It went well the first two hours and then she started shaking and saying her belly hurt. They gave her demerol and she came out of it rather quickly. Then she got a fever of almost 104 that went away also.

Tonight she got her meds and is having Demerol every hour. She has slept through almost all of it (good thing for her) and then she vomited and got anothe rfever of 101. She is doing great through this. As always Super LuLu. Keep her in your prayers and thoughts. She will be on antibiotics at home which I will be giving through her Port. So though I am nervous of ever hurting her I feel confident I can do it:)

Thanks All of you

Love
xoxoxox
Ronette, Lexie and Jaedyn

Tuesday, September 13, 2005 2:03 PM CDT

We havnt started the therapy yet. It hasnt arrived in to the hospital. So i will keep you updated!!!!!

Monday, September 12, 2005 6:43 AM CDT

Lexie starts her treatments today!!!! Wish us luck and Pray hard!!!

Her MRI of her head was so that she could start this protocol is was not because they thought something was going on sorry to alarm ya, I was worried too but then found out it was in order to start the treatment. The tests she had to have to start was a Physical, blood tests, scans to see extent of the disease, bone marrow tests, HIV test, chest x-ray, heart function, kidney function, and liver function, and urine tests. But the funniest one on the list was a pregnancy test---well all of you rest assured Lexie is not pregnant. Some of the questions they have to ask when you get signed onto the floor when she is being admitted are just as crazy like is she an alcholic and drug abuser and is she sexually active its funny becasue i'm sure the nurses dont really wanna ask them. Her protocol is ANBL0322. So all you adventurous types can look that up on the internet as to what it all involves. So till Wednesday she will be getting this treatment for 4 hours a day. In that 4 hours she could go into anaphaltic(so spelled wrong) shock which if she does will require her to get Epinepherine(wrong too) which she has got this reaction before when she got platelets once. It was a scary time because she couldnt breathe she swelled up started itching very bad. So pray she avoids that. Rest assured she will be in PICU where she will be on monitors. So I can at least sleep in peace that she will be watched.

Im also not coping with anything well anymore. My brothers death has really got the best of me lately and then everything with Lexie I've just gone to the bottom and I'm not coming back anymore. In order to be there for Lexie I've shut down all my emotions and I just dont feel anymore and I'm not positive which cant go on anymore I'm not doing either of my daughters any favors by that and they are the only ones who really matter in the scheme of things. So I'm swallowing alot of pride and going to get help because I cant do it myself anymore. So wish me luck all it matters to me to have support. I will be strong again....for my babies. Well Im outta here on my way to start this and heres a positive thing one I have not said in awhile------She will beat this so look for rainbows and when you see one think of her and know God has got her back!!!


Thanks
Love xoxoxox
Ronette, Lulu and Jady bug

Monday, September 5, 2005 7:37 PM CDT

Well Lex and Jady had a good weekend. Went to the fair with there grandparents. Went fishing with me and a friend today. They have no patience for it I found out. Oh well first time for everything. They say they wanna go again but who knows.

Lex has an MRI scheduled for tommorow. Doing a scan of her head. Im not sure why but Im hoping it all turns out good. So keep her in your thoughts and prayers.

XOXO
Ronette Lexie and Jaedyn

Wednesday, August 31, 2005 7:02 AM CDT

Well we have a game plan. She is gonna get in a study that involves giving her antibodies to try to help her body fight this cancer. She will be recieving at least 4 rounds of it (once a month) and a possibility of up to 10 times total. The drug is called Hu14.18-IL2 and it is created in mice. I find that funny since Lexie considers herself Puss in Boots. It is a very painful treatment so as she is getting it (3 days 4 hours a day) she will have to be on morphine to combat the pain it will inflict on her. There are plenty of scary side effects but the side effect of losing her is way greater. So we are gonna give this a go and hope that something will finally get through to the cancer we don't want it here. We will be doing the therapy in Bangor unless they cant get it approved then possibly Portland. All of which is fine with me Boston and New York are a scary possibility.

This is the first day of school for the girls. Lexie got to go as they wont be testing her for this study till possibly next week so they both got up and went to school begrudingly. I will post some pictures of that soon.

So please keep her in your thoughts and prayers. We all appreciate that very much.

Oh yes I forgot to mention the cancer is actually located between her hip and the top of the femur. It is in the marrow there and it is on both sides. So they think this is a relativly new thing that just started. So hopefully as all times before we have caught it in time. So again please hold her up in prayers and in your thoughts. Shes strong but without all you we wouldnt be quite as strong.

Thanks
Ronette, Lexie, and Jaedyn

Monday, August 29, 2005 4:05 PM CDT

Well the news is in........

It was cancer. Its in the bone, but her bone marrow is still clear. We do not have the plans of what they are gonna do yet. We will have a meeting tommorow at 3:30 to go over a game plan. I told Lexie and she thinks she is puss in boots from shrek and she said I guess I got to get my kitty claws out and take care of those bad buggies.

So I will update tommorow what the plan will be. I expect New York but thats me always thinking the worse. Whatever it is we will do it together. Pray for her she needs them.

Thanks
Ronette and Lexie and Jaedyn

Wednesday, August 24, 2005 5:21 PM CDT

Lexies tests are set for tommorow. Theres bloodwork in the morning and at 2:00 she will have a CT guided Biopsy and a Bone Marrow Aspiration. I believe that both tests are gonna show theres no cancer. But please keep her in your thoughts and prayers--I know so many of you out there have been and I appreciate it so much. I will post as soon as I know anything but EXPECT a good outcome. Thanks and God bless.

Ronette Lexie and Jaedyn

Tuesday, August 23, 2005 9:49 AM CDT

Lexie had a MRI and x-ray yesterday. The MRI proved to show nothing from my understanding but the X-ray did show something like what the MIBG picked up on. She is going to have a biopsy as soon as possible. They said it may just be dead tissue so lets hope that is all it is. She will also be having a bone marrow biopsy at the same time. I told Lexie today that there maybe something wrong. That the bad buggies may be attacking her or it may be nothing. She as Lexie always does laughed and asked "Is it a bug or a spider this time?" I told her that she would have to be asleep for these procedures and she yelled "Yay, that means that i get drugs to put me asleep thats good I get some beauty sleep" She cracks me up but if it wasnt for these moments we would proberly cry. She definatly is getting me through this and she is so strong. Well keep her in your thoughts and prayers. I appreciate it.

Thanks
Ronette, Lexie and Jaedyn

Friday, August 19, 2005 7:24 AM CDT

Well Lexie has had a series of tests recently. Everything has turned out good and normal. Except yesterday she had an MIBG scan which is a scan that she has a small amount of radiation that is given to her through her IV. She then has scans for two days that if there is any cancer the radiation will go to and make any tumors glow. There was a spot that lit up on her thigh. So she will now undergo more tests to prove if there is anything there. There is a chance it will be nothing but I am scared. So please pray I would appreciate that. She's been through so much already and we just need to keep believing she will continue on and continue being the happy Lexie she has always been. Thanks and God Bless

Monday, August 8, 2005 1:49 PM CDT

Lexie had an MRI a few weeks ago and we just got back the results. There was something still in her chest but it appears as though it has shrunk from the last time. So even though its a cancer the good thing is its now smaller. God has brought her so far that it can be nothing but good from here or at least thats my belief. Please keep praying for her she has some more tests coming up. Thanks and God bless

Saturday, July 9, 2005 11:33 AM CDT

Well I've finally updated a little. Everything is going great Lexie will be having more tests coming up in the next few weeks to determine where we are at. We may be going to Boston or New york soon depending on the outcome of the tests. Please pray

Saturday, June 4, 2005 10:38 PM CDT

Well its official

Lexie and Jaedyn are graduates from daycare today. I will be posting photos soon online. They recieved there diplomas and had a real great time today. I of course cried a little as did there teacher as she spoke of what they have accomplished. I cant believe my little babies will be starting school in the fall. Many more milestones ahead for these two and they will do it together I just know. Keep praying for Lexie and think of my grandfather too. He has bladder cancer and it looks like it will be able to be taken care of but I love that guy and so I worry. Also my aunt who is going round two with cancer after beating breast cancer just last year. Thanks to you all. Love to you all.

Wednesday, June 1, 2005 6:19 PM CDT

Lexie has been out of the hospital she was only in over night (sorry for not updating) She had her week of chemo last week and got through it without getting sick. She has a bad cold again this week so we may end up back in the hospital soon. Love to you all.

Thursday, May 12, 2005 4:01 PM CDT

Lexie is currently in the hospital battling a host of things. Last week she was diagnosed RSV positive and has had a bad terrible cough. Then this morning she has been vomiting and having diarrea on top of the cold so please keep her in your prayers she'll get through this and come back home soon.

Thursday, April 28, 2005 12:29 AM CDT

THE NEWS IS BACK FROM LA FINALLY.............

THE BONE MARROW IS CLEAR

Lexie is doing great eating chips acting bad and being a little devil. Keep her in your prayers that her next step in the battle are just as successful. Amen

Monday, March 14, 2005 4:32 PM CST

Results of testing:

Drs are not sure if its just a sample error or what but Lexies bone marrow is clear. She may be getting another test either wednesday or thursday and they will take the marrow and send it too LA so wish us luck and lots of prayers too.

Tuesday, March 1, 2005 6:52 PM CST

Lexie is out of the hospital!!!!!!!!! Yeah We are in the middle of a blizzard up here though. She will be having testing on her marrow and scans on Tuesday Wish her the best

Tuesday, February 22, 2005 3:17 PM CST

Hi Everyone Been busy and not been updating sorry!! Lexie is in the hospital since Last Friday with diarrea again. Hopefully this will stop and we will be going home for awhile. She certainly not acting sick at all shes taking opera lessons and treating all the nurses to her off(key)broadway voice. She's also doing kung fu on everyone and saying do you want a piece of me and bring it on (thanks alot pau pau) She wants to get home to her Daisy cat but Auntie she says she doesnt like chase no more. Keep praying for us that we will be going home soon.

Saturday, February 12, 2005 3:24 PM CST

Lexie is now done with Radiation for now they have decided that if she does go to transplant in the future they would rather do it then and not overload her now. She is starting chemo on Monday again keep her in your thoughts and prayers.

Tuesday, February 1, 2005 9:09 AM CST

Hi all. Lexie seems to be doing good. She was admitted to the hospital due to vomiting and diarhea connected to the chemo she just had. It took a week for the diarhea to go away but today was the first sign I know of that she had a solid bowel movement. So things are looking up in that area anyway.

She decided to paint herself with watercolors so they are giving her a bath right now. Which gave me time to check my email and update here.

I know I am not the one to normally update this page, but that doesn't mean I dont read it. I thank you all for all your thoughts and prayers. If anyone deserves them she does. Keep up your chin too Justin, she asks about you too. I think she has some watercolor paintings that she is going to send to you.

Thank You all

Mike-- Lexie's dad

Wednesday, January 26, 2005 7:58 PM CST

Hi soory took so long for the update. Lexie is not going to be recieving treatment in NY because they turned her down for the study. Basically we are sitting here in Maine getting a chemo that will not cure but will just maintain her so the cancer does not spread. She is also recieving radiation and she is doing real good with that. So pray for a cure or a miracle cause she needs it.

Friday, December 24, 2004 10:24 PM CST

Well Merry Christmas all!!! We just landed back in Bangor and we are tired. We have no results from tests yet but hopefully sometime next week. Lexie is doing great great great and no signs of slowing down a bit. Thank you all for the prayers and please keep her in your prayers that she can put this disease behind her!!!!!

Wednesday, December 22, 2004 6:59 AM CST

We are now in New York have been here since yesterday. She has Bone marrow aspirations and a MRI today. Pray for her. Pray its clear.

Saturday, December 11, 2004 7:00 PM CST

Lexie is doing great still no counts though.
She and Jaedyn are being interviewed by the Bangor Daily News for the millinium twins turning five and how they are today. What a story huh?

Hopefully we will be going home soon. Lexie wants to get home before New York. Santa visted her and got her a game boy advance so shes happy even though she said she hasnt been that good this year. Thanks for all your prayers.

Wednesday, December 8, 2004 3:41 PM CST

Lexie is doing real well today. No white count yet as to be expected but her platlets seem to being well. Her workup on her liver has also proven to turn itself around. Thank God. She wants to go home bad as she misses sissy and gram and she misses her boys Justin and Devin but she knows Justin will soon be home from Boston and all better as she would say. I'm so proud of that kid she prays for those that are sick everynight at bedtime and she believes and knows she will also get better. I do too because 2004 hasnt been good but 2005 is going to be a miracle year. Keep the faith Keep praying. I thank you all that have been praying becasue she has a great big security blanket covering her and protecting her from all the bad.

Tuesday, December 7, 2004 1:41 PM CST

Had a rough night last night Lex had a reaction to platlets even after being premedicated. So she was super itchy last night for awhile. Dr. says her billiruben (spelled wrong I know) is elevated. Most likly from the chemo so please be praying for her and her liver that she comes out of this o.k. She seems fine and she is eating and drinking a bit so its a little better than yesterday. God will get her through this I know Hes brought her way to far to let her go now. I'm off looking for a rainbow.....peace(as her uncle Rusty would say)

Monday, December 6, 2004 2:20 PM CST

sorry havnt updated in awhile computer at home is still broke. Lexie has been home from NY since the weekend before thanksgiving so we are here in maine waiting for the next trip. Shes in EMMC right now with fever/no counts. Hope she gets better soon because the week of the 20th we are supposed to go back to NY. She will be home for Christmas I think and then after her birthday/new years we are going down to start the therapy in NY. Keep us in your prayers that this nightmare ends for her soon.

Thursday, November 18, 2004 3:22 PM CST

We are in NY. This is a beautiful city, busy and scary all at the same time. We have a lot of scans and tests tommorow and then after that we'll see we may not have tobe here long hopefully. I'm hoping all thetests prove she is ready for transplant. They say this is the best place for her type of cancer. I may not wanna be here but I don't wanna be anywhere without Lexie Lulu. Keep Praying especially tommorow.

Tuesday, November 16, 2004 11:09 AM CST

Hi Lexie is being released from the hospital in maine today. Tommorow we will be on our way to New York so please keep her in your prayers. She is doing great despite whats going on inside her body so please as I said keep holding her up in prayers and keep looking for rainbows.

Tuesday, November 9, 2004 12:11 AM CST

We are in the hopsital with Lexies counts being down been here a week and they havnt come back yet. We most likly will be leaving for New York next week so please keep praying and hope for a solution soon.

Wednesday, November 3, 2004 11:43 AM CST

Lexie is in the hospital with a fever. Jaedyn has what they suspect is pneumonia and Lexie sounds the same as her sister so I'm concerned. I'm worried about Jady bug too because this is how it all started last year with Lexie and then she had cancer.

Don't know the date yet for New York I hope and put all my prayers and faith that something can be sone for Lexie there and this all can be behind us in a few months.

Keep us in those prayers.

Thursday, October 28, 2004 12:01 AM CDT

Sorry took so long to update my computer at home is broken.

We are in the hospital in Maine getting a round of chemo. Lexie when she went to Boston did not have surgery because they determined there was nothing in her chest at all. She will be going to New York Memorial Sloan Kettering within hopefully the month there she will undergo more scans to make sure there is nothing in the cheat and to see what is going on with her bone marrow. Please keep praying we really do appreciate it. Shes also starting to get some fuzzy hair growing in so shes really looking cute and she is so fuzzy its sweet.

Monday, October 4, 2004 9:05 PM CDT

Lexie is in Boston waiting to see if she can have her surgery here. Please keep us in prayers

Wednesday, September 22, 2004 7:04 PM CDT

Lexie is going home tommorow. She will be going to Boston or New york soon for surgery.

Wednesday, September 15, 2004 12:18 AM CDT

Were in the hospital with an infection again. Results of tests her bone marrow still is not clear. New york Memorial sloan ketteing may be an option that she will be doing in the near future. She still has a spot in her chest that will have to removed possible in Boston. Having a problem with one of Lexies doctors shes the fill in dr when Lexies dr is away and she is nasty. She is blaming Lexie for thiis most recent infection when My daughter does not touch her port. She reportedly saw lexie disconnecting her self from her pole Not true she never has EVER. She saw her trying to push something through her line with a syringe that nurses give her or leave her but I'm the bad parent because of this. She is never ever allowed to touch a syringe at home unless its too throw it away and I watch her do it. I dont know how many countless of times the nurses have left syringes in the room or said yes play with them and then I've got clawed up and called names and slapped from Lexie because I took it away but I'm the bad guy here. This is coming from a dr who doesnt even have kids so when she has some then she can make her judgement calls. But MY CHILD WILL NEVER BE ACCUSSED OF SOMETHING that I know is false and I wont stick up for her. I don't have perfect children I know but there are some other people who are less than perfect around the hospital that need to take one day and walk in my shoes. Maybe they'd shut up before they spoke.

Monday, September 6, 2004 7:51 PM CDT

Sorry took so long to update. We were in the hospital for nearly a week last week. Shes had a bone scan and an MRI done so far tommorow is MIBG and a bone marrow biopsy. This was also Springfield Fair week and so we were planning on going but because of Lexie I didn't I couldn't leave her out. Well I'll keep you informed please pray cause we all need it right now. Thanks

Monday, August 23, 2004 10:04 AM CDT

Lexie came home from the hospital on Saturday night. Everything went well with the chemo no major upsets.
Her MIBG scan had some results that may not be good. I found out on Friday that she had a spot show up where the original tumor was and one possibly down by her leg/pelvis area. So I'm hoping that its nothing and that everything is going well.

If her bone marrow doesn't clear than she will be possibly be going to Philadelphia for a MIBG treatment. I'm hoping its cleared. I so would like to have the stem cells behind me.

Well thats all the news right now. Keep praying!!!!

Tuesday, August 17, 2004 7:25 PM CDT

Lexie is going into the hospital tommorow for the next round of chemo. Hopefully this one will work. Then we will be Boston bound. Keep her in your prayers. Thanks

Monday, August 16, 2004 7:28 AM CDT

Lexie is doing ok. She was in the hospital last week for two days. She had stabbed herself with a pen on the thumb and it was a little red. With no counts they started giving her the antibiotics she needed. She had fun because her little friend Justin was there also with an infection and his brother Devin who she calls her boy. Its too cute.

She is getting counts done today and hopefully those are all good. She will be having another round of chemo starting soon. Lets hope she will be Boston bound after this I want to get this behind me.

Pool is up but its missing things like a hose to the pump so it cant be pumped and no electricity is out there anyway and theres no fence. Its to close to the people next doors property line so I could scream.

Other than that everything is ok. Please keep praying for Lex and Jady too shes having a hard time with everything lately.

Tuesday, August 3, 2004 6:40 PM CDT

Lexie came home from hospital Monday night after being on 72 hour continious drip of chemo. She is doing great she had no episodes of being sick and she is doing great at home too. Her pool is getting set up Thursday but she can't use it because when she was in Boston they put in a central line that cannot get wet. Another reason for me to hate Boston. So she just gets to look at it this summer but hopefully next summer she will be able to use it.

I went to a family reunion the other day and they had a pool there and Jaedyn and a group of kids there was getting in and swimming and splashing. Lexie sat all alone watching and inching closer to try and get in. It breaks my heart she isnt even getting to be a kid and so I think this is the hardest thing for me. I'm way depressed with everything that happened to Rusty things I don't understand and proberly never will. I have a nephew and a niece Ive lost out of all this. I'm depressed because I've got Boston once again looming and I hate it I'm absoloutly miserable there and well the hospital isn't that great at all. The floor shes on would depress a clown. I hope I can come out of this because I want to be there for her and do all I can to help her fight this but I'm just not doing good. I am so overwhelmed with all that she is going through let alone all the other things that are going on in my life.

Then on Sunday a little girl named Alex Scott who this year alone has raised 700,000 for cancer research and neuroblastoma died. She had battled it 7 years out of the 8 she's been alive. I mean she gave all us parents that are fighting this disease hope and then this happens. I feel like any minute now the sky is just gonna open up and pour down some more misery and upset. I know I sound unhappy and this should be a place for happiness but I just don't have alot to give except right now Lexie is happy, running around and just gorgeous. Well please keep praying for her please. Please keep her in your thoughts.

Friday, July 30, 2004 9:46 AM CDT

Lexie starts her chemo today. I can't recall what drugs they are going to be using because everything lately has been a blur. They are planning two rounds and then they will recheck her. Lexie is doing well she is running around and playing like theres no tommorow. Its good to see her be a kid even throughout all of this. I will be posting more pics as soon as I get the chance so you guys can all see how cute she is bald. She has been stating lately she doesn't think shes cute because she doesn't have hair. Trust me she's gorgeous. Well keep her in your thoughts and prayers please.

Sunday, July 25, 2004 10:00 PM CDT

Well we made it home in time for the funeral barely. We got home last Tuesday night and the funeral was Wednesday afternoon. Been busy alot of things going on with family and well to be honest fighting with my brothers ex and her family. Hoping to get through it and get on with our lives.

Lexie's cancer has not cleared from the marrow and not everything in the tumor was dead so now she will have to recieve more chemo before transplant. Please pray for us the stress of everything is almost unbearable. Thanks and God bless

Friday, July 16, 2004 10:14 AM CDT

Lexie is doing fine down here in Boston they are talking about possibly sending her back to Maine soon.

On other news July 14th my brother Russell Worster died. Its hard being in Boston when there is so much pain at home and being here it dont feel real. When Lexie lost her hair to chemo he shaved his head first so it wouldn't seem so bad and then it was fine for her to lose her hair I will always be greatful for that. Please keep praying for Lexie and please pray we get home soon so I can finally face and accept what has happened.

Tuesday, July 13, 2004 11:03 AM EDT

Lexie had surgery yesterday. She came out of it well and from what I know they got most or "all" of it. And almost all of what they took out was dead cells as well. Meaning that the chemo was working.

The surgery took approximately 5 hours. She is still in the PICU but that is by their choice not by need. They said they could move her to a room now but just wanted to keep an eye on her until tonight or tomorrow morning.


I will update this when I get more info. Her mother knows more details than I do. I just seem to catch onto words like- " its out", or "she's ok". I always seem to miss the other details.

But she is well....

THANK YOU FOR ALL YOUR SUPPORT. IT IS APPRECIATED MORE THAN YOU WILL EVER KNOW.

M. CONLEY

Tuesday, July 6, 2004 7:44 AM CDT

Sorry for not updating lately.

Lexie is going to BOSTON this Sunday for surgery on Monday wish us luck and please be praying. We've been camping with my sister for two days and she had alot of fun. I sway back and forth between ok let her be a kid and have some fun before surgery and then I'm like if she goes camping she could get hurt, sick, etc... so I'm driving myself crazy. She watched the fireworks Sunday night they were pretty and she said they were loud but she liked them. I believe thats the first time her seeing fireworks so it was extraa special to share that with her.

She's getting an MRI right now so I'll be sure to let you all know the results. CT scan and Bone scan are set up for tommmorow. So I'll let you all know when I know. Thanks for all the prayers in advance.

Monday, June 28, 2004 11:24 AM CDT

Lexie had blood work today I do not the results yet of whether she will need blood. She's really pale, not eating well but still is holding her own.

When I came home on Saturday it was raining at the hospital and by the time I got home it was still raining a little but the sun had come out and me the person on the constant lookout for rainbows couldnt find it and so I asked God please to let me see it. Let it appear before my eyes if Lexie was gonna be ok and it didnt show and it didnt show finally upset that where I was looking it wasnt showing up I looked straight ahead with tears in my eyes there it was right in the middle of really black clouds--That even through the storm and through the black clouds there is always hope and always the PROMISE!!!

Thanks and God Bless

Sunday, June 27, 2004 5:46 PM CDT

Came home yesterday from the hospital. Lexie is doing fine so far so good. We will be going to Boston soon it is just a matter of time now.

Sunday, June 20, 2004 4:16 PM CDT

Hi Everyone

Lexie started her fifth round of chemo on Friday---sorry didn't post sooner---She will be in the hospital till Wednesday. Hopefully this will be the last round as her bone marrow has cleared except for ONE cell. Her MRI may have shown a slight change of the tumor getting bigger but the Dr is checking into that for sure.

She is pretty moody right now with this round of chemo. She hasn't really been eating this time around but she is still little Lexie Lulu running around getting into trouble.

There is a possibility that she will be having the tumor removed in Boston instead of Maine. As much as I hate Boston I just want this ordeal to be behind me so the quicker we get Boston done hopefully we never have to go back either. I'll adjust I'm sure I always do even when I go kicking and screaming into most every situation thats thrown at me.

Well thats about all there is to update you on. Please keep her in your prayers.

Sunday, June 13, 2004 5:42 PM CDT

We are back home. Lexie's hand is healing----Thank God----After spending a week in the hospital and she was pretty much on house arrest because she fell down at the hospital too We are glad to be home. She had a CT scan on Fri. It shows the tumor is shrinking slightly. She has a bone marrow biopsy and MRI scheduled for tommorow. So please be praying! She will be starting her fifth round of chemo sometime later this week so its back to the hospital for awhile (5 days) but I'm glad to be home now.

Tuesday, June 8, 2004 2:41 PM CDT

Lexie is back in the hospital again since yesterday. On Sunday she fell down twice on my sisters gravel driveway. She got a boo boo on her hand that turned into an infection rather quickly. Her white count was down at that time so she has nothing to fight this infection. Her fever has gone but her hand is still swollen and so red its almost purple. It also started streaking up her arm. So please pray for Lexie shes in good spirits and happy but she is in a bad situation right now. I feel awful because all I've ever tried to do through all this is let her be a kid and now I feel that by letting her run around that I've hurt her. I guess I have a lot to learn I thought the only thing I had to watch out for was like a cold or something now I know. And I also let her go all night and part of the next day before I took her to her oncologist. I did take her to the emergency room at the hospital thats closest to me because she was crying almost all night they cleaned it up but did not give her antibiotics. I had also taken a sleeping pill that night so I was no shape to drive 70 miles but I should have for her. I'm so mad at myself. PLease keep her in your prayers.

Saturday, June 5, 2004 5:15 PM CDT

Lexie was admitted into the hospital overnight last night for observation. She and her sister was playing catch and she threw a stuffed animal to her sister but she wound up real hard and spun around and I have Pergo floors so they are slippery with socks and she fell down and hit her head. Well a goose egg and a bruise formed almost immediately so knowing her counts must be dropping I called the Dr. She is fine and was fine. She needed platelets and because her and her sister were so wound up yesterday her access to her port was pulled out slightly so she had to be reaccessed. I think she is getting to trust that with the emla on it doesnt hurt but she is so scared that she whips herself into this frenzy but she is always fine after she has been accessed. So we are home now. White counts are dropping so a few days of being worried and then we'll be starting round 5. Please keep praying.

Saturday, May 29, 2004 4:00 PM CDT

We are home. 4th round of chemo finished this morning. She's feeling fine in fact after we got out of the hospital she wanted to go shopping (a girl after my own heart :>) We picked up her swingset that her Big Nanu from Virginia bought for her. There is a spiral slide that she has said two years ago that when she goes down it makes her hair go WHEE! because of the static cling so hopefully when her her hair grows back it will say WHEE! again. Also have heard from Make-A-Wish that her pool is coming soon so hopefully she will have a great summer before Boston. Please keep praying....

Friday, May 28, 2004 3:02 PM CDT

Jady had a bone marrow biopsy this morning evrything went well. Lexie started her 4th round of chemo Wednesday night so we are going to be in the hospital till tommorow. I'm so glad the tumor is shrinking and apparently from an MRI on May 3rd she had already showed some tumor shrinkage. I guess the MRI reader didn't read it right or something so although we have had no fingernails from all the nailbiting for the past month IT IS WORKING! There is talk perhaps of a few more rounds of chemo if after these two rounds it is still not out of the bone marrow. So that is all Lexie is still healthy as a horse so please continue praying it stays that way.

Tuesday, May 25, 2004 5:51 PM CDT

Lexie will be starting chemo tommorow. Dr Allen called and said there is a difference in the size of the tumor it looks a little smaller so hopefully the chemo is working on something. Also they are going to continue on with the same protocol because her bone marrow doesnt have to be cleared if shes getting her sisters so please keep praying........

Monday, May 24, 2004 7:40 PM CDT

Lexie's bone marrow still has cancer in it. We did not start chemo today because the doctor wants to start the appropriate plan for her. Also we did a CT scan today and still have not heard the results yet. Please keep praying!

Thursday, May 20, 2004 7:01 PM CDT

Lexie had Bone Marrow Biopsy today hopefully that will tell us that the cancer is cleared from her marrow. Also found out today that her and her sister Jaedyn are identical twins. Jady will be the donor so I'm so happy.

Tuesday, May 4, 2004 3:04 PM CDT

Lex is in the hospital undergoing chemo again. everything going well so far. Keep praying!

Saturday, May 1, 2004 10:19 AM CDT

We are back from Boston. Jaedyn did not give her stem cells because they want to determine if they are identical twins. Cross your finger!

Thursday, April 29, 2004 4:23 AM CDT

GOING TO BOSTON!!!! Jaedyn is giving her stem cells today.

Monday, April 26, 2004 7:28 PM CDT

Lexie's home!!!!!!!!!!! Her counts have come up. She came home yesterday after Friday she had an allergic reaction to the platlets. Shes doing fine now. Going to Boston thursday. Keep us in your prayers!

Thursday, April 22, 2004 8:09 PM CDT

Lexie is still in the hospital. Her counts are down. But the good news is her sister is a complete match. 6 out 6 things that they test for matched yeah!!!!!!!!!!!!

Monday, April 19, 2004 7:35 PM CDT

Lexie was admitted into the hospital early this morning. At 1:00 am i woke up with her crying saying her belly hurt. I went and got her zofran and gave that to her and went back to sleep. Then at 1:30 I woke up and felt her and she was burning up. Her temp was 102.7 under the arm. I called the dr and she told me to get to the nearest hospital (a mile away from my house) and then she would have to be brought down to the big hospital one hour away. She got to the local hospital and had no fever but felt very hot. I had given her no medicatiion the only thing between my house and the hospital was alot of praying. They gave her some meds and she was transported by ambulance to Bangor where we are right now. She is doing well and did get another round of chemo today. Hopefully we will be home soon. Keep Praying!

Friday, April 16, 2004 8:17 AM

Lexie was able to go home. Although her sister decided to pull out the needle out of her port last night and they had to come to Bangor to get it put back in.

Well we found out that Jaedyn IS a match for Lexie with the bone marrow. Both of them have to goto Boston on April 29th for some testing. I am not sure why Lexie has to go, but I do know that Jaedyn has to go , amongst other reasons, to see if she might have anything that she may end up giving lexie. Lexie is doing well as far as I can tell.

Her and Jaedyn are REALLY in to telling knock knock jokes. They dont make a bit of sense but we laugh at them just the same.

I cant think of anything else at this point. I will update it as soon as i get more information.

till next time...........

Tuesday, April 13, 2004 9:36 PM

Well Lexie is having her next round of chemo. She should be able to go home tomorrow if all goes well. She will have to come back next monday. She has thrown up a couple times with the new stuff but that is to be expected. she flet warm and looked puffy in the face tonight but we had the nurse look at her and they didnt think much of it. they said they would keep an eye on her tonight. We still havent found out if Jaedyn is a match yet, but i cant figure it would be much longer.

till next time......

Monday, April 12, 2004 6:37 AM CDT

Well things have changed slightly. Lexie is being put back into the hospital today, for a a two day treatment, then she goes home for a week. Ronette and i got it wrong in the last journal entry. My assumption is that, as long as her counts stay good, she wont need to come back until the following Monday. Except for a blood test on Friday is my guess.

I still don't know yet when Jaedyn goes to boston, but will update this page for that info when i get it.

Well the count is three. Three people that have shaved their heads for Lexie. Her uncle, myself, and my father.

As always we thank you for the prayers, thoughts, and support. We, and Lexie, appriciate it very much.

till next time

Oh I almost forgot. Lexie got to do a easter egg hunt yesterday. She and Jaedyn were very exicted, if for no other reason than to be outside. Lexie looked at her mom and said " look mommy, the easter bunny pooped all over the yard!" Gotta love her.....

Friday, April 9, 2004 10:48 PM

Well lexie had another blood test this morning. everything is still going good. Plans have changed some though. She is now ging back into the hospital on Monday April 12th. If i remember right is for two days then she can go home for two days. i think that process repeats it self a few times. Her hair is almost completely gone now. I did go through with shaving my head. daddy is bald now. her and jaedyn asked me "why you cut your hair daddy?" She seems to be in good spirits, a little bratty but good overall. Jaedyn is having a hard time dealing with all this but we are trying to make sure we pay as much attention as we can to her. she loves her sissy


anyway thanks again as always forall your prayers and thoughts. she deserves them all......

Tuesday, April 6, 2004 11:35 PM

Lexie did go home on Sunday. Had to come down for some blood test on Monday. That test revealed her counts were good and she doesnt have to come back for another test until Friday. If her counts stay good, she wont have to be readmitted until April 16th. I believe thats when the next round of Chemo starts.

Her hair is really falling out now, but she seems better with the thought of losing it. Her uncle shaved his head for her and there may be more of that to follow. I promised I would do it for her and will have to keep my end of the bargin. :P

Anyway... she is doing good and again we thank you for all your thoughts and prayers. They are greatly appreciated.

Saturday, April 3rd 2004

Lexie has gone through her first week of chemo, as well as the next week of recovery. She gets to go home tomorrow April 4th, for 5 days, then its back for the next regiment of chemo I believe.

She had lost 5 pounds but is gaining it back. Her hair has started to fall out, well its started to thin i guess is the correct way of putting it.
She is starting to show different emotions. We think she is depressed, but when she goes home that should help.

Ill try and keep this page up to date for all that cant be here.


Thank you to all that have sent gifts and cards, as well as the prayers. They are very much apreciated.

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