History

Saturday, December 25, 2010

Merry Christmas to everyone!!!! Hope you all have a wonderful holiday season and Happy New Year!

Wednesday, June 2, 2010

Hi & Thanks to those few who still check in on us...

Today makes SEVEN YEARS since our Princess Juliett was first diagnosed with Neuroblastoma. We have gone through some scary times and survived them all! Thank you, God!

We're all still missing Maw Maw, but we know she's happy in heaven with her loved ones. We're glad we got the time we did have with her here on earth. It's inevitable, but it still hurts when we lose someone special.

Juliett is moving on to the 5th grade. She had a great year...A/B Honor Roll! We've got the class pet, Ella the hamster, for the entire summer. Lucky us, huh? We don't have any set plans for this summer except to enjoy every lazy minute of it.

Jourdan is moving on to the 11th grade. He did very well in all subjects except Geometry. Darn that Math! I can't believe his school years are almost over! Ring Day will be here before we know it, and then off to College too. I still remember him in Pre-K. How can he be all grown up so soon?

Thanks again for dropping by...Take care and have a great summer!

Love ya, Miss ya, Bye!

JACKIE & FAMILY

Sunday, May 2, 2010

Hi,

The CureSearch Walk was a huge success! Team Juliett raised over $5,000 in just three short weeks. Over $70,000 was raised in total to help aid in childhood cancer research.

While we walked on May 1, 2010 at Audubon Park in honor of Juliett, we also walked in memory of Jeff's mom, our kids' "Maw Maw" Kathy. She passed away suddenly on Sat morning. Jeff agreed to be at the Walk because it is such an important, meaningful event and because his mom really wanted him to go. What an incredible man! He waited to tell me & the kids about her passing until the Walk was over. He was so strong the whole time...I had a lil feeling, but not really. He knows we would not have been able to do the Walk if we knew she was gone. We weren't ready for her to go! Who is, right? It's just so sad.

I did have a dream about her this morning that helped a bit. She smiled & waved to us as if to say "I'm ok"! It was a really nice feeling. Thank you God for letting me see her happy & healthy!

Jourdan is sad & doesn't really express his feelings, but he is 16 so I guess it's hard for a teenage boy to do that freely. Juliett is not taking it very well at all, who can blame her? We'll all get through this tough time, as we have in the past with all of our challenges. It's just not good timing, but when would it be?

Praying for us & y'all!

Thanks,

JACKIE & FAMILY

Friday, April 9, 2010

Please join Team Juliett - Kids Crushing Cancer to help raise money for childhood cancer research: Copy & paste this link

http://curesearch.kintera.org/faf/donorReg/donorPledge.asp?ievent=347082&lis=1&kntae347082=72422EC9720D45F1B1148DF9536E6975&supId=289263258

Thank you & God Bless!

Wednesday, March 17, 2010

SHAME ON ME!!!!

A little late news, but great news! JULIETT IS SIX YEARS CANCER FREE!! We will see Dr Yu (Oncologist) in one year!

We are all doing just fine, and always praying for all those in need...

HAPPY ST PATRICK'S DAY!

Saturday, February 27, 2010

Hi,

We went to Children's Hospital from Wed to Fri where Juliett had her yearly scans and checkups done. We will see Dr Yu on Tues, March 2, and hope to hear wonderful news. She's been doing so well in everything!

She loved riding on "Bear" for the Thoth parade. Thank you so much to Caye for making it possible! She participated in two pet parades this year with her yorkie "Trooper" and proudly won 2nd Place for Best Group. She also entered her ferret "Tagg" in a 4-H pet contest and won 1st Place. What a lucky girl!

We're celebrating my mom's bday today...Happy Bday, Mami!!!!

Saturday, February 13, 2010

HAPPY VALENTINE'S DAY!!!!

Hope you spend it with the ones you love...

Juliett and Jourdan are so happy to be off from school this upcoming week. They're both doing very well right now.

She's riding in a parade on Sunday, Feb 14. She'll be dressed as a pirate and riding on a horse for the Uptown Toth parade. She can't wait!

Her yearly evaluations at Children's Hospital will be from February 23-25. We hope to get great results once we see Dr Yu on March 2.

FEB 2010 SIX YEARS CANCER FREE!

Praying every night for our lil fighters.

Sunday, January 24, 2010

HAPPY 40th BIRTHDAY DADDY! We love you very much and hope you have the best day ever...Love, Jourdan, Juliett, and Jackie too!

We're still praying for lil fighter, Adrianna...and all precious children. May God Bless Us and Keep Us Safe!

Wednesday, January 13, 2010

Hi,

I wanted to post about a special lil girl, Adrianna and her family who need ALL the prayers they can get right now as they just found out their baby girl has only days to live.

Please visit Adrianna's website at http://www.caringbridge.org/visit/adriannacavanagh

Praying for a miracle!

The Johnston's

Tuesday, January 5, 2010

Good morning!

Juliett was on LIVE TV this morning being interviewed for The Blood Center's Blood Drive. She's usually shy, but she did great today! She had to be at the Ch 6 Studio at 5:30 am. It was very early & super cold, but she wanted to be there to tell people to come donate blood! Thankfully she hasn't needed any blood transfusions since 2004, but there's always a need for blood donors.

Juliett has been in remission for almost six years!

You were amazing today, Juliett! Then again, you are amazing every day! Your family and friends are proud of you.

The Johnston's

Friday, December 25, 2009

MERRY CHRISTMAS AND HAPPY NEW YEAR!

I honestly did not think anyone stopped by to visit until someone asked me if I was going to update Juliett's page. THANK YOU EMILY!!!

Juliett has been cancer free for six years and doing very well. She is nine years old, in the fourth grade, and on the honor roll. Her hair never did grow back, but we're in the process of receiving a Locks of Love wig. She can't wait!!!

Big brother Jourdan is now 16 yrs old, in 10th grade honors classes, and still takes great care of his little sister. He'll be driving soon, but he's in no rush...whew...I can surely wait!

We pray every night for all our lil fighters!

HAPPY HOLIDAYS!

The Johnston's

Tuesday, March 10, 2009

Hey y'all,

Juliett's scans came back NEGATIVE!!! SHE IS NOW FIVE YEARS CANCER FREE.

January 12, 2009

What Cancer Cannot Do

Cancer is so limited...
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
It cannot conquer the Spirit.

Author Unknown

HAPPY NEW YEAR EVERYONE!!!

We're all doing great.

Please check out this website to read three stories about three wonderful kids.

http://chnola.org/content/upload/AssetMgmt/PDFs/CancerReportWebCovinddALL.pdf

Please check out our cute little skydiver:

http://www.youtube.com/watch?v=E9DUR-aCHIk

Wednesday, December 2, 2008 11:00 PM CST

Friday, September 12, 2008

Hello everyone!

Juliett went to clinic to see Dr Yu. Her hemoglobin level was up on its own, without Aranesp injections...THANK GOD! She's gaining weight, but she's only in the 10th percentile in height, so we'll have to keep an eye on that.

She saw Dr Aviles, for her kidney, and is scheduled for a VCUG procedure to check for reflux. It involves a catheter. She had it done several years ago, and it was so painful that I'm sure she remembers it well. I wish she didn't have to go through it!

She also saw Ms Amanda, her favorite Audiologist, and will be getting some new hearing aids soon. Hopefully she'll like wearing these more than the ones she wears now!

Don't forget to eat at Chili's on Sep 29. All profits will go to St Jude.

Please check out our cute little skydiver:

http://www.youtube.com/watch?v=E9DUR-aCHIk

JACKIE & JEFF

Tuesday, June 24, 2008 8:51 AM CDT

Hello everyone!

Juliett continues to do well. She and Jourdan are enjoying summer break, of course! Juliett will be entering third grade and for Jourdan- HIGH SCHOOL! We thank you for your continued thoughts and prayers for Juliett and our family.

Thanks again,

Jeff

Thursday, May 8, 2008

Hey,

Happy Birthday Juliett!

Juliett will be 8 years old on Fri, May 9th. She will be joining the entire 2nd grade class in having their group Communion celebration on Sat, May 10th. And of course, Mother's Day is on Sun, May 11th. I guess we'll be busy this weekend!

HAPPY MOTHER'S DAY TO ALL OUR SPECIAL MOTHERS!!

Please pray for families having difficulties during this special occasion.

The Johnston's

Thursday, May 8, 2008

Hey,

Happy Birthday Juliett!

Juliett will be 8 years old on Fri, May 9th. Her 2nd Grade class is having their Group Communion celebration on Sat, May 10th. And of course, Mother's Day is Sun, May 11th. Looks like we'll be busy this weekend!

HAPPY MOTHER'S DAY TO ALL OUR SPECIAL MOTHERS!!

Please pray for families having difficulties during this time.

The Johnston's

Monday, April 28, 2008

Hi,

Just wanted to invite ya'll to participate in the St John Parish Relay for Life Event. There will be plenty to see and do during this 18 hour event. Juliett will be a guest speaker this year. You can hear her story at 6 pm on Sat, May 3. Please join us if you can!

Relay for Life Event
Sat, May 3, 2008 @ 12 pm - Sun, May 4, 2008 @ 6 am
Joe Keller Stadium next to E St John Elementary School on Airline Hwy
La Place, LA

Celebrate, Remember, Fight Back!

Hope to see you there!

The Johnston's

April 4, 2008

Hi y'all,

Juliett is still doing great! Her Nephrologist said everything's ok. She has no kidney complications, thank goodness.

She just recently had three baby teeth pulled. She was nervous, but as usual, she got through it just fine (with a lil help from that funny gas).

Juliett will be making her First Communion soon. We have everything ready but the shoes. She looks like a beautiful bride!

Thanks for stopping by. Keep checking on us.

Love,
The Johnston's

Friday, March 7, 2008

Hi y'all,

Than God it's Friday! Juliett had her tests done at Children's Hospital. She had a Cat Scan, Bone Scan, MIBG, Echo, Psych Evaluation and Pulmonary Function Test. All seems well. Of course, we'll have to wait for the results from the MIBG which scans her entire body for any trace of Neuroblastoma cells.

Please pray for clean scans!

We'll write back soon...

The Johnston's

Tuesday, February 12, 2008

Hi,

Juliett won't be having her scans done until early March. I guess we have to wait!

Take care, Keep fighting & praying!

JACKIE

Thursday, January 10, 2008

How's everybody? We're great!

We had a very Happy Holiday, hope ya'll did too! We're all doing fine. Back to school for the kids...they don't like that, but they're doing terrific.

Juliett will be going to get her scans done on Feb 12, and we pray that all is well!!! So many children are fighting these illnesses & it makes me really sad. I feel guilty sometimes saying how great Juliett is doing when some of the children we know aren't doing as good. We pray every night for these families.

Take care...We hope to post great news next month.

JACKIE

Wednesday, November 7, 2007

Hi everybody,

Yesterday Juliett went to Children's Hospital for her visit with Dr Yu. Everything went well. She's an old pro at everthing & is a great patient (unfortunately she's had too much practice)...but she did get upset when they announced that she'd be getting her flu shot. She wasn't expecting it & the anxiety just took over. She did fine though!

Juliett will have her scans done in February 2008 & if all goes well she won't have another one until February 2009. If all is still well after that, she will no longer need to go for scans. We'll only have to go for Dr visits once a year.

GOD, I PRAY FOR THAT!!!

Take care everybody...HAPPY HOLIDAYS!

JACKIE

Wednesday, October 24, 2007

Hi,

Just in case anybody still reads our updates...

We are so glad to say we're still doing OK. Juliett & Jourdan made the Honor Roll this 9 wks, & we're very proud of both of them. I can't believe how far Juliett has come. She reads wonderfully & is able to write very well in cursive. (That's a fancy name for script, I think so anyway, hahaha). She has a little trouble in some subjects like Math, but then again so do I. It's hard for me to believe that Jourdan will be going to High School next year. Where'd the time go?

Thank you for stopping by & please say HELLO!

Jesus, please take care of all these precious children that are battling these horrible illnesses & their families too.

JACKIE

Tuesday, October 9, 2007

Hi,

We just came back from a mini speed trip to Pontotoc, MS & Memphis, TN. The kids were off of school this past Friday, October 5th. I decided to pack em up & move em out. They had been wanting to visit friends we made while living there after Hurricane Katrina.

We had a great time even though it was only a weekend visit.

On Friday, we drove through Pontotoc to Juliett's school & visited her Kindergarten teachers & a few friends. It's nice to see how they grow & change.

In Memphis, we picked up Jourdan's close friend and went touring. We visited the Children's Museum, The Peabody Hotel & Mall, and we stopped by St Jude's Shrine to say a special prayer for all the children!

On Sunday, we were sad to leave...We stopped in MS to see our old home & visit more friends. I was so happy to see everyone. Juliett played for a few minutes with her close friend Carra Beth.

Juliett will not need to have scans done until Feb 2008! WooHoo...I think & hope that's a good sign.

OCTOBER MAKES FOUR YEARS JULIETT SHOWS NO EVIDENCE OF CANCER!

Thank you GOD!
Thanks for stopping by & Take Care!

JACKIE

Wednesday, September 5, 2007

Thank Goodness everything is still going very well for us!

Please pray for all the children fighting illnesses.

Thanks,

Jackie

Monday, August 13, 2007

This summer was great but way too short! Juliett & Jourdan are back in school. They like their teachers. I hope this year is a good one!

JACKIE

Friday, July 6, 2007

Hi,

Just in case you happen to stop by...

Summer is flying by too fast. Juliett signed up for a Summer Reading Program at the library & has been reading alot. Her goal is to read 50 books. Jourdan hasn't even started to read his two required Summer Reading books. He hates to hear the word "school" because he doesn't want to think of going.

We need a vacation soon! It doesn't feel like summer if we don't go somewhere. I know...we went to Pensacola, but that was a mini trip.

Ok, well please sign the guestbook & say HI.

The Johnston's

Tuesday, June 19, 2007

Hope everyone is enjoying this summer! We are. The days go by too quickly.

We took a trip to Pensacola Beach. Juliett didn't care too much for the water because the waves were pretty rough. She did love playing in the sand, especially burying Uncle Mike & Matthew. Jourdan had fun riding the waves on a boogie board. We all had fun!

Thanks for stopping by...please say hello!

JACKIE

Friday, June 1, 2007

Just to let ya'll know....

Juliett will be on the Children's Miracle Network Telethon's Kiddie Committee. She'll be on Ch 6 live this Sunday, June 3 from 2-5:30 pm. Look for her!

Thursday, May 17, 2007

Hi,

Sorry to keep ya'll in suspense.

JULIETT'S SCANS CAME BACK NEGATIVE. HER CANCER HAS NOT RETURNED. THANK GOD!!!!! This October makes four years with no evidence of disease. One more year and our baby is cured!

We pray for all families battling childhood illnesses.

Thanks for checking on us...

JACKIE

Tuesday, May 1, 2007

Our special little princess will soon be 7 years old. She can't wait!

We wish you the best always, Juliett!

Love,

Mom, Dad, and Jourdan

Thursday, April 12, 2007

Juliett went to Children's Hospital N.O. for her six month scans this week. We won't know the results just yet but we pray all is well!!!!!!!

THANKS FOR CHECKING IN ON US...

The Johnston's

Saturday, April 7, 2007

Here's wishing all of you a very Happy Easter!

Love,

THE JOHNSTON'S

Monday, March 12, 2007

Hi,

There's a new baby in the family. My sister, Jessica gave birth to McKenna Lisette Leedy on Tues, March 6, 2007. She weighed 7 lbs & measured 20". Juliett is so happy to have a new baby girl cousin. She loves to hold her!

We'll write more later.

Thursday, February 8, 2007

Hi,

Hope everyone is doing well. We are fine. Feb 11, 2007 makes three years since Juliett's bone marrow transplant at Children's Hospital. Her six month check up is in April.

Jourdan and Juliett are both doing great in school. Juliett now reads books to Mom & Dad. Every day she gets better!

Thanks for stopping by...

JACKIE

Wednesday, January 24, 2007

HAPPY BIRTHDAY TO DADDY!

LOVE,

JACKIE, JULIETT & JOURDAN

Saturday, December 30, 2006

!!!!!!!!!!!!HAPPY NEW YEAR!!!!!!!!!!!!

The Johnston's

Tuesday, November 7, 2006

Hi,

We're so ready to go on that trip to Disney World! We just received our flight tickets today, so there's no turning back now.

Jourdan will be celebrating his 13th birthday on Nov 22. I can't believe my baby boy is now a teenager! Juliett is happy being almost 7 years old. We're so proud of both of them.

Well...write ya later!

JACKIE

Wednesday, October 11, 2006

HI....

We waited and waited but the news was well worth it!

JULIETT'S SCAN WAS NEGATIVE!!!!!!!!!! SHE IS STILL CANCER FREE!!!!

Thanks to all of you for your thoughts & prayers.

JACKIE

Saturday, October 7, 2006

AAAAAAAAAHHHHHHHHHHH!!!!

As if we haven't waited long enough for the results of my sweet child's scan now we must wait until Tues, Oct 10 to see the Dr. We pray for the best!

We want to take that trip to Disney World. My sister & her family are there now, and I can't wait till we're there.

Wishing & Hoping & Praying...

JACKIE

Friday, September 22, 2006

Hi,

We are VERY excited to be joining Kidd's kids on this year's trip to Disney World. Juliett & Jourdan have never been there. Jeff & I haven't been back since we were young. We are hoping nothing will stand in the way of this trip...

Juliett will go for a cat scan on October 3. We pray everything goes well.

Jackie

Friday, September 22, 2006

Wednesday, September 13, 2006

Hi

Juliett's scans show something, but we won't know what it is until another cat scan is done next month. We pray it's nothing!!!!

JACKIE

Friday, September 1, 2006

Hi,

How's everybody? We're doing good. Juliett had a busy week. She sprained her ankle on Sat, Aug 26 (Mom's Bday)while jumping on the bed with her cousin. On Mon she went to the Dr for xrays & missed school. Tues-Thurs we were at Children's Hospital for her six month check up scans so she was out of school those days too. Her foot is doing much better, & she's able to walk on it now. We've been doing school work all these days. I hope she keeps up!

Jourdan is doing really well at AOL. They both like the school. We're so proud! I am working at the school's After Care every afternoon. Juliett stays with me the whole time, but Jourdan usually goes home. It gets kind of crazy at times with kids from PK-8th grade.

Thank you for thinking of us!

JACKIE

Wednesday, August 9, 2006

Hi,

Well, it's Back to School time for us tomorrow! Juliett goes to first grade & Jourdan goes to seventh grade. It's a catholic school here in La Place named Ascension of Our Lord, AOL. They look so good in their uniforms.

Juliett will be at Children's Hospital for her six month check up on Aug 29. We pray all goes well!!!!

Thanks for stopping by...

JACKIE

Monday, July 17, 2006 9:06 PM CDT

Friday, June 2, 2006

Hi,

Today is a very special day for us. It makes three years since Juliett was diagnosed with cancer. WHAT A DAY!!! We thank God that she is doing well, and we pray every single night for her and others.

Tomorrow we'll be LIVE on Ch 6 for the annual Children's Miracle Network Telethon. Look for us!

Hoping everybody has a happy and safe summer...

JACKIE

Monday, May 22, 2006

Hey,

How's everybody? Excited about summer? We are! Well, sort of...we haven't made any plans except sleeping late...at least I hope.

Juliett's birthday party was a huge success! Every guest showed up except for her cousins in MS because their mom had just given birth to baby number five...OLIVIA. We missed ya'll & can't wait to see ya'll down here!

Juliett had an appointment with Dr. Aviles (kidney) at Children's Hospital today. Everything is well, thank goodness! We saw alot of friends during our visit. We stopped in the clinic to see Dr. Gardner (Dr before transplant). It had been a while since we had seen her.

Juliett doesn't remember alot of faces or places, which I guess is good...being that some memories I'd love to forget myself. She remembers the outside playground really well though, and made sure we stopped there to play before going home.

The kids' last day of school is this Friday, May 26th. Juliett's end of the year Kindergarten program is this Wed. Dad & Bubbie are coming from TN to see her. She's been rehearsing some skits they're gonna perform, but she still needs practice...hahahaha!

TAKE CARE AND THANKS FOR STOPPING BY!

JACKIE

Tuesday, May 9, 2006 8:36 AM CDT

HAPPY BIRTHDAY TO OUR PRINCESS!

Happy Birthday to you!
Happy Birthday to you!
Happy Birthday Dear Juliett, HAPPY BIRTHDAY to YOU!

SIX Years old and we are so proud of you! You are a SURVIVOR and we are so happy to have you as our little girl. We grow more proud of you each day and we love you more than you will ever know. You have fought bad Mr. Cancer for over half your life and you are WINNNING! Today is YOUR day, Juliett! Have a wonderful day and a great PARTY on Saturday! WE LOVE YOU! HUGS AND KISSES!

Love,
Dad, Mom, Bubbie & family

Friday, May 5, 2006

Hi,

Happy Cinco de Mayo! It's a Mexican celebration...

Juliett's counting down the days till her birthday. She's gonna start celebrating with cupcakes at school on Tues, May 9. Then comes her Disney Princesses Party on Sat, May 13. She's excited and helping with all the preparations.

Jourdan is counting down the days till school lets out. It's gonna be a long, hot summer...and we'll be together.

Hurricane Katrina really made a mess, didn't she? My parents are settled in La Place, and we're here too. I just wish EVERYTHING was back...I miss Da Parish.

Friday, April 28, 2006

Hey,

How's everybody? We're fine. I hope ya'll had a Happy Easter, we sure did. Boy, the months just keep flying by. Somebody special is having a birthday real soon...and her name is JULIETT! She wants to have a Disney Princess Party with a spacewalk and pinata. My mom has already started making the pinata, but the spacewalk she wants is gonna be hard to find.

We went back to MS to visit our friends during the Easter holidays and it was so great to see all of them. Juliett wishes she could go back there. She misses everyone and loved being able to pick out what to wear to school. Uniforms are a bit easier for mom though. School's almost over and I can't wait!

Thanks for checking on us. And to all you moms, we wish you a Happy Mother's Day! Dads, your day will be up soon.

JACKIE

Wednesday, March 22, 2006

Hi ya'll,

Juliett's scans came back NEGATIVE!!!! HOORAY! She also visited the dermatologist to find out why her hair hasn't come back. She's so ready to have hair. We're going to start using a scalp treatment to see if it will help any. I hope so. I'm used to seeing her without hair & I think she's beautiful, but I see the stares she gets at times & it breaks my heart.

Juliett has been having high fevers all this week & has missed school. The Dr called to say the lab work came back & her white blood cell count was high which means infection (maybe sinus) but we're waiting for blood culture to come back. I hope it's not pneumonia again.

Juliett really misses her "old" school & talks about her friends all the time, but thank goodness she adapts well & is fitting right in here at La Place Elementary. They have been very kind to us and are actually in the process of scheduling a major LOCKS OF LOVE event for her in May at the school.

THANKS TO ALL OF YOU FOR STOPPING IN TO CHECK ON US!

Monday, March 6, 2006

Hi,

Well, I couldn't stay in MS any longer. I was so homesick and felt so alone. I'm back in LA and things are going well. Juliett had pneumonia that lasted a week, but thank goodness she's fine now. She'll be at Children's Hospital this week for scans, so I guess it kinda worked out well that we moved back.

I hope everybody is doing great! I'll write more later.

JACKIE

Saturday, January 21, 2006 6:37 PM CST

Hey ya'll,

How's everybody? We're trying to make it here...in Tupelo. It's tough...we miss home alot. I've been making so many trips to New Orleans during the past few months and they're taking a toll. GAS is too costly & it's just too far to go for only a few days. I've gotta make it work here for a little while cuz I'm working, Juliett's in school, and Jourdan's only 1 1/2 hrs away. I have to be near my kids.

Juliett will be at Children's Hospital from Tues, March 7 thru Fri, March 10 for a CT Scan, Bone Marrow Aspirate, and MIBG Scan. It's been six months since her last check up. WOW! Time really flew by...I'm glad for that!

We had just hit "NORMAL" back home...I want that NOW! I know it will come, but WHEN?

Take care, thanks for checking in...

JACKIE

Wednesday, December 21, 2005 11:33 PM CST

Hey ya'll,

Today was a great day! Christmas Day came early for Juliett in Tupelo, MS. She had two early visits from Santa Clause who happened to bring her more gifts than anyone can imagine, even a BARBIE bike, just like the one she lost back in N.O. The people here are amazing! We received help from kind people who unselfishly make time to help out needy strangers. This just doesn't happen because of the hurricane either...this is what they do.

I have a car, I'm working, I'm learning how to cook, and I'm on my own for the first time in a very long time. We love Tupelo, MS! Juliett is doing great here with me and is in Memphis for the holidays. Jourdan is making friends and going to school daily in Memphis. He likes where he is! My parents and Pepper (dog) are in LA looking for a house to purchase/FEMA trailer to stay in.

Christmas is here! We hope everyone has a HAPPY HOLIDAY!

THE JOHNSTON'S

Wednesday, October 26, 2005 1:58 AM CDT

Hey everybody,

It's almost Halloween. Soon we'll have Thanksgiving, Christmas, and a New Year. It comes so fast!

We're still in Tupelo, MS. Life is rough for all of us. We're battling a cold right now. I started it about 5 weeks ago and still haven't fought it. Now it has spread. Jourdan had to go to the Doctor in TN because he spent the weekend with me and is now ill. Juliett is doing fine. She had a low fever over the weekend but is over it.

I'm ready for a NORMAL life again! Can somebody tell me where and when I can find that please?

THANKS ALWAYS YA'LL!

JACKIE

Friday, October 7, 2005 5:36 PM CDT

Hi ya'll,

We're trying to adjust to life here in Tupelo, MS but it's not like our New Orleans. Juliett is a warrior in every aspect of the word. She has adapted so well to her new home as well as her new elementary school. Jourdan is not coping so eagerly. He has missed the entire first session here in MS. He has been traveling back and forth from MS to TN with his dad. He had better be ready by this Monday.

God help us all...and especially our dearest friend MADISON MUSYL who lost her battle to Neuroblastoma on Oct 4, 2005. We pray for your family at this awful time.

Thanks as always for checking on us.

JACKIE and Family

Wednesday, August 31, 2005 8:36 PM CDT

FRIENDS & FAMILY,

Just when we were getting back to a "normal" life, Hurricane Katrina comes along. Our home is under water! We didn't pack much, but we are alive and well. Some of our friends and family are still in New Orleans, we don't know how or where they are. Please pray for all of these families...God Bless Us All!

Jackie

Thursday, August 25, 2005 4:55 PM CDT

Hi,

Thanks for all the great comments....I'll try to visit everyone's page this weekend...I finally got high speed internet!

Jourdan is doing great in his second week of school. He really doesn't like going but once he's there he's ok. Juliett is doing terrific in her first week of school. She actually falls asleep at nap time. Mrs Jill her teacher is awesome! I hope she continues to enjoy school.

I just received a call today from Children's Hospital saying that Juliett's bone marrow is negative. Wow, it's the ONLY time that people are actually glad to hear those terms, isn't it? THANK GOD!

Well, hope everyone is enjoying back to school time...I AM!

JACKIE

Wednesday, August 17, 2005

Hi,

Thanks for checking in on us! Yesterday was a GREAT day for us... Juliett's scans were all NEGATIVE. She shows No sign of cancer. She just had her bone marrow aspirate done so we should hear back soon with those results, but I pray everything will be FINE.

Jourdan missed the second day of school already, but we got him there today. Juliett went to bed early and was up before her bubby...and she DOESN'T have to be in school yet. She is so EXCITED!!!!! I am so GLAD!

Jourdan has been invited to travel and study in Australia in 2006 as part of a local student delegation. I know he won't go alone, but what a great honor. I am so PROUD! I am sure both kids will do AWESOME in all that they do.

Thanks again for checking in on us...

JACKIE, JEFF, JOURDAN, and JULIETT

August 14, 2005

Hi ya'll,

I hope everybody's doing well. I can't believe our Summer is over. We went to Children's Hospital last week for Juliett's scans. We see Dr Yu on Tues, and she'll get a bone marrow aspirate. I sure do hope everything is FINE!

Jourdan and Juliett are awesome in Karate but Jourdan doesn't always want to go. They're always practicing! And they look so adorable in their gi (uniform). We call her Karate Kid.

School starts tomorrow for Jourdan. Juliett starts on August 22nd, and she's finally excited. She loves her teacher. There will only be seven students in her Kindergarten class which I'm thrilled about cuz she should get alot of attention.

Well, thanks for checking on us...

JACKIE, JEFF, JOURDAN, and JULIETT

Saturday, July 2, 2005 11:09 PM CDT

Hey everybody,

I hope ya'll are enjoying the summer! We are all doing very well... going to bed late & waking up late too. But we did get up early a few times to enjoy the day. We went to the movies during a summer camp event to see "Elf" for the third time, but somehow "Herbie" was playing in the room we were sent to. We stayed to watch it, and we loved it! One afternoon, Juliett & I packed a blanket, lunch, and crafts for a picnic with her relatives but didn't stay long because it was too hot. We ended up going for a swim at their house.

I think swimming lessons for Juliett are on our list of things to do before summer ends. She hadn't been near water for the past two years and now she has plenty of opportunities to swim in friends' pools. I need her to be prepared for that!!! She usually just sits on the steps or holds on to the edge of the pool. She uses floaties, but mostly she clings on to anybody who'll let her. I just learned of a child drowning and it breaks my heart.

Jourdan and Juliett are attending Karate school. It's amazing to see how quick the little ones learn. They can't wait until the next class, especially because they will be getting their uniform (gi). Jeff went to the same school when he was young, so we're excited that they are both showing interest in Karate.

I want to thank all of you that keep in touch with us. We really appreciate your thoughtfulness.

Jackie, Jeff, Juliett, and Jourdan

Wednesday, June 1, 2005 10:27 AM CDT

In My Daughter's Eyes
-Martina McBride
(James Slater)

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes

Thursday, May 12, 2005 9:49 PM CDT

Hi,

Well, Juliett is now five years old! It's amazing how fast time flies...Thank GOD! Her Tinkerbell party will be on May 28th. She can't wait to jump in the castle spacewalk & ride the train we've rented for her. There'll even be a clown that offers face painting. How exciting! Jourdan's getting too old for this kind of stuff, but we want him to be here anyway. We want this celebration to be a blast!

We hope all you moms had a great Mother's Day and we wish the same to all you dads on Father's Day!

Keep checking on us...

JACKIE, JEFF, JOURDAN, & JULIETT

Friday, May 6, 2005 8:02 PM CDT

Hi

Juliett finally got hearing aids...she has been so excited about getting them...until now that she has them. I guess it's just gonna take some time for her to get used to them.
She's been keeping busy during the day and sleeping really well at night...I don't think it will be a problem for her to go to bed early for school. Getting her to want to go to school might be the problem.

I had to make an appointment with the pediatrician because Juliett was running fever overnight on Wed. It's just a virus; however, now we're being referred to a cardiologist because the Dr. detected a heart murmur. If it's not one thing, it's another, right? Jeff is amazed at how much he and Juliett are alike...he was born with a heart murmur. I remember thinking how can God create these tiny little babies with such detailed features like their parents because Jourdan looked just like me.

Juliett's fifth birthday is this Monday, May 9! She's gonna have a Tinkerbell/Peter Pan party at the end of the month. I'm so glad this year we can celebrate it the way she likes...with A LOT of people. She's helping to get it ready!

School is almost over and we can't wait...I don't know what we're gonna do yet, but we're holding off Disney World until we can stay in the Give Kids the World Village. I know we'll enjoy that!

Please stop to say Hello!!! We love ya'll!

JACKIE

Wednesday, April 20, 2005 9:32 PM CDT

Hi,

I hope everybody is well. Juliett is doing great and will be turning five years old next month. She wants a Tinkerbell themed party, but I am having a hard time finding everything I need at nearby stores. I guess it's time to go shopping out of town! We're also excited because we're trying to set up a trip to Disney World. Jeff and I haven't been there since we were kids. Jourdan and I met relatives at one of the Disney hotels and he swam in the pool until midnight, but it's not Disney World.

Summer is getting closer. Juliett isn't too willing to change her night schedule yet. When I tell her she will be going to school early in the morning, she tells me she's gonna hang on to her bed. (I just picture Anna from the movie Freaky Friday).

JACKIE

Monday, April 4, 2005 4:34 PM CDT

Hi,

Hope everyone enjoyed their Easter holidays!

Jourdan went back to school today and is taking SATs this week. Juliett is still having trouble adjusting to a normal sleeping pattern but the closer we get to this new school year...the quicker she'll have to straighten out.

The kids finally made it to Six Flags this weekend. They had a really good time with Dad. Juliett actually gets upset when she can't get on a ride because of her height. Jourdan talked me into getting on a simulated roller coaster ride at the mall, and I screamed like a baby. I'm too old for this!!!!!

Check in & say HI...we like reading new messages.

JACKIE

Sunday, March 20, 2005

Hi everybody,

We had an awesome fun-filled weekend...and it was very needed. It began when Jourdan received Terrific Kid at school for his grade. EXCELLENT JOB, we're so proud!

On Saturday we had a great time at an Angels' Place Easter picnic at City Park. Juliett got to ride a pony, visit with new friends, make crafts, join in an easter egg hunt (of course), and help Jourdan find bugs.

On Sunday we spent the entire afternoon at the Irish-Italian parade in Metairie with their cousins & friends. They caught more produce than they did beads. Ever got hit in the head with a cabbage? IT WAS EXCITING!

The weekend was gorgeous - perfect weather. The kids couldn't complain about not having something to do this weekend...awww, but tomorrow is a school day.

Monday, March 14, 2005 10:44 PM CST

Hello everyone! Juliett is doing great! I took her to our local St. Baldrick's Day event on Friday and everyone involved raised approximately $70,000 to fight childhood cancer. That is AWESOME! I will be adding picture of the event this week. Hopefully....we will find a cure before too long.

Juliett has been going to the park, playing with her dogs, and patiently awaiting for SIX FLAGS to open! Her and Jourdan cannot wait to go. She will start school in August and we cannot be thankful enough for her wonderful progress. As always, thanks for your thought and prayers.

Jeff

Thursday, March 3, 2005 2:50 PM CST

Juliett continues to do very well with the help of everyone's thought and prayers. Her last round of testing came back negative!! She has been fitted for hearing aids and guess what color she chose? PINK of course! It is hard to believe that she will be starting school in the fall. She has come such a long way since that awful day in June. We are so very proud of her. Jourdan is doing well and is waiting for summer vacation. He does realy good in school and we are so proud of him. Thanks to everyone for keeping Juliett in your prayers.

Sunday, February 6, 2005 7:49 PM CST

Hi everybody!

It's Mardi Gras time here in New Orleans! Juliett & Jourdan have been enjoying the parades, especially Endymion because she caught some really nice throws from Uncle Auggie who rides in this parade every year. She gets upset when a float passes her by without throwing anything. Jourdan is just glad to be around his cousins Michael & Matthew.

Jourdan has this entire week off from school so can you imagine how happy he is? We're trying to get Juliett ready for Kindergarten. She practices writing all the time and is a Wiz on the computer. I think she's a Computer Junkie. She gets so involved in her game that she literally has to be pulled away.

We'll be at Children's Hospital from Feb 14-18 when Juliett gets all of her scans & tests done. This time last year we were in isolation with Juliett because of her stem cell transplant. We were there during Valentine's & Mardi Gras. We came home on Ash Wednesday...how nice is that? It's just unbelievable how fast the year came...Thank God!!

Well I hope everyone is doing well! Until next time...

Jackie

Thursday, January 19, 2005 8:53 PM CST

HELLO EVERYONE!
Juliett is finally over her virus and doing well! We were able to keep her from being admitted to the hospital which was a very big milestone for her. She was actually able to be treated by her local pediatrician without us having to run to the hospital because of a fever. She has turned a BIG corner in her fight. Her hair is coming back slowly.....lots of thin strands. She LOVES the computer she got for Chrsitmas. She is writing her first and last name by herself and it's hard to believe she will be starting school in August! Thanks for everyon who has been praying for her.

Jeff

Sunday, January 2, 2005 10:46 PM CST

Hi everybody,

We hope ya'll had a great Christmas and New Year. We enjoyed having snow in New Orleans on Christmas Day. How amazing is that? The kids loved it!!!! Juliett unfortunately has been running fever since Xmas Day due to a virus. She's home but she's so not herself. We'll be going back to the pediatrician tomorrow.

Jourdan goes back to school tomorrow and we'll miss him. He's doing really great in school...Honor roll! Juliett writes her name really well & loves to do "homework" with Jourdan when he does his. I hope she enjoys school!

Take care...can't wait to see how fast 2005 goes by!

Friday, December 17, 2004 9:22 AM CST

Juliett is coming along just fine. She had some tests done recently and we are awaiting the results. She is excited about Christmas. She wants Barbies, Bratz dolls, makeup and everything else little 4 year old girls like! She is so happy and looking wonderful. We are so thankful she is doing so well. Merry Christmas!

Monday, November 29, 2004 06:41 AM CST

SORRY for taking so long to update the website! November has been very busy. Juliett has been doing fine with the exception of a nagging cough late at night. Her doctor thinks it is related to her asthma condition from a while back. She has been on a nebulizer for two weeks. Hopefully, it will clear up soon. Jourdan's birthday was on the 22nd. He had a lot of fun and got the things he wanted! Juliett was happy to celebrate it with him. We are looking forward to Christmas.....Juliett wants Barbis dolls, Bratz dolls and "cooking stuff" for her Barbi Kitchen. Juliett had her tubes removed about three weeks ago. I was so thrilled to give her a full bath for the first time since she was diagnosed. It's amazing how we take the smallest things for granted sometimes. I was so proud to watch her play with her toys and not be afraid of getting any tubes wet. Thanks for thinking and praying for her!

Jeff

Thursday, November 3, 2004 9:31 PM CST

Juliett was discharged from Children's Hospital on Halloween Day. She was able to trick-or-treat that night at a Halloween function for Angels' Place. Her central line was removed as well. The doctors determined it was infected which was probably causing her fever. She is glad to be out of the hospital. She loves to solve puzzles, watch cartoons and play with Weenie the Pooh, her weenie dog. Jourdan is doing good in school and having fun with his sister as always. His birthday is this month (november 22nd) and he will be 11 years old! Time sure does fly!

Jeff

Friday, October 22, 2004 7:12 AM CDT

HAPPY ANNIVERSARY Juliett! One year ago today you had that awful tumor removed from your precious little stomach! We were in New York and your surgery was about to begin. It was the longest wait I have ever been through and it was the happiest day of my life along with the day you were born. You have come such a long, long way! We are so very proud of you!

Thanks to Dr. LaQuaglia for his skilled hands and blessings from God for the miracles he performs daily on kids who are in life-threatening situations. I truly believe her life was saved on this day a year ago. I cannot thank the surgical team enough for saving Juliett's life!

DAD

Thursday, October 21, 2004 7:23 AM CDT

HELLO EVERYONE! Sorry it has been a while since the last update. Juliett has been admitted to the hospital with a fever. It seems to be just a virus since all of her blood tests have been negative. At this time last year, we were preparing for her surgery in New York at Memorial Sloan Kettering Cancer Center. Dr. LaQuaglia and team saved her life in a nine hour surgery and we are eternally grateful! Juliett looks great and has the same great attitude and spirit as ever. Thanks to everyone who has written and sent best wishes! I will update more often.

Jeff

Thursday, September 23, 2004 07:03 AM CDT

We recently received word that Juliett's kidney function has improved to 30! Up from less than 15That is double. Either the doctors were wrong or a miracle took place. I think it was a miracle as a result of everyone's prayers! She is doing really well and does not have to return for a check-up until next month. Her hair is slowly coming back......hopefully by Christmas! Thanks again for everyone who is pulling for this special little girl.

Jeff

Tuesday, August 31, 2004 9:51 AM CDT

Hello everyone! We are concerned about Juliett's kidney function. We have been told it is down to 18 We are to meet with the nephrologist ASAP to discuss treatment options. She looks great and is not in ay discomfort so that is a big PLUS! It is sometimes deceiving when you know that internally things are not so well. As always, we take one day at a time.

Jourdan has returned to school and wishes everyday that it was still summer vacation. He is in the fifth grade and I can't believe how time flies. He is growing in every way. He and Juliett have fun playing together although he is not interested in Barbie dolls or BRATZ dolls. He likes movies, the computer and ordinary boys stuff. Juliett just follows his lead sometimes. She is a BIG Scoobie Doo fan. She will watch the videos over and over.

Please pray for Madison Berry and family. Madison was diagnosed shortly after Juliett with Stage IV NB. She has recently relapsed and will have to start chemo once again. She is a sweet little girl and like all NB kids, brave as anyone we could ever know. www.caringbridge.com/la/madison
Stop by her site and wish her and her family words of encouragement!

Thanks to everyone for keeping Juliett and family in your prayers.

Jeff

Thursday, August 19, 2004 11:52 PM CDT

Hi,

We just got some fantastic news! Juliett's immune system is normal. She is off of all her medications!!!!! She is so happy about that. She no longer needs to wear her (darth vader) mask in public, and she can be around people again. (We've been pretty much socially deprived for the last six months.) I'm still not sending her to Pre-K. It's too soon, and she can't get all the necessary immunizations right now anyway. She'll get the bone scan, ct scan, MIBG, and GFR done the week of Aug 24.

Jourdan started school this morning. It was a challenge since he had been sleeping in during the summer. He's in the 5th grade & I know he'll do great! We miss him alot...

Well, we're excited...hope good things are going around everywhere! We hope to hear from ya'll!

THANKS,
Jackie (johnston826@netscape.com)

Friday, August 13, 2004

Hi everybody,

Summer vacation is over...Back to school for the kids. Well, we finally got our mini vacation. We took Juliett, Jourdan, and their two cousins to the Grand Casino Hotel in Biloxi. We all had a great time! We were like vampires, we only came out at night. The pool was open until 11 pm which worked out great for the kids but didn't help my tan any. Juliett & Matthew floated around the pool on turtle swim rings they just had to have from the souvenir shop while Jourdan & Matthew swam underwater wearing brand new goggles. We also visited Marine Life before coming home. The kids had a blast! They got to feed sea lions & play in a gravity ship. We even ran into Melissa, Juliett's nurse from Children's Hospital who was there with family. This is such a small world...no matter how far we go...we know somebody. I'm so glad we were able to do this!

Tuesday was clinic day for us & it had been two weeks since the last visit...Juliett got a shot of aranesp but other than that everything is going well. In a few weeks her immunity test results will be in & we'll see if she may be able to get her central line removed. That will be so much better for her! She won't be starting Pre-K just yet because she's only 6 months post transplant...not that I was about to send her right now anyway! We've got a bunch of scans scheduled for late August.

JACKIE (johnston826@netscape.com)

Thursday, August 5, 2004 11:28 AM CDT

Hero... by Mariah Carey

There's a hero
If look inside your heart
You Don't have to be afraid
Of what you are
There's an answer
If you reach into your soul
And the sorrow that you know
Will melt away

And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So When you feel like hope is gone
Look inside you and be strong
And you'll finally see the truth
That a hero lies in you

It's a long road
When you face the world alone
No one reaches out a hand
For you to hold
You can find love
If you search within yourself
And the emptiness you felt
Will disappear

And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So When you feel like hope is gone
Look inside you and be strong
And you'll finally see the truth
That a hero lies in you

(ohhhhhh) Lord knows
Dreams are hard to follow
But Don't let anyone
Tear them away (hey yea)
Hold on
There will be tomorrow
In time You'll find the waaaaaaaaaaayyyyy

And the hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So When You feel like hope is gone
Look inside you and be strong
And you'll finally see the truth
That a hero lies in yooooooou
That a hero lies innnnnnnnnnn
.....yooooooooooooooooou.........
Mmm That a hero lies in
....yoooooooooooooooooou........

Saturday, July 24, 2004 6:33 PM CDT

Hi,

We're bored!!! Jourdan went to Florida for a few days with his cousins, and we really miss him. Juliett wished she could go too, but she understands she can't just yet. We may try to go somewhere nearby if we get the ok from Dr Yu.

Juliett has been wearing out the VCR watching videos, mostly Scooby Doo. She moved on to Disney videos today. I hope ya'll are enjoying the summer!

JACKIE

Friday, July 16, 2004

Hi,

Is this summer hot enough for ya'll!!

Juliett's clinic visit this Tuesday was not as short as we had expected it to be. We had been lucky nothing serious had been done to her lately. This time I had to have blood drawn so docs can compare Juliett's immune system to mine. She got aranesp (shot in her leg) to boost her red blood cells. It's due to anemia from chemo and/or kidney problems. She'll get this every two weeks. She needed a blood transfusion too. We waited for the blood to come in & were admitted, but not for too long. She couldn't wait to get home!

Juliett's kidney function hasn't changed. There's nothing to do about it right now & a transplant is out of the question until she's been cancer free for two years. We'll just pray she stays strong!

Our prayers are with everyone!
Jackie (johnston826@netscape.com)

Friday, July 9, 2004

Hi,
I hope everybody had a great 4th of July! We did. Jourdan, Juliett & her cousins shot fireworks out in the front yard & we watched a nearby firework display from home. Juliett loves sparklers and snap pops. This child isn't afraid of much! I really don't like fireworks, but I love to see them having fun.

Juliett's GFR shows the same 30% function but there's nothing to do about it right now. Dr Aviles is going to keep in contact with us if we need him. She's getting back to normal otherwise. Her clinic visits are going to be getting shorter soon. This Tuesday she has to go in to have her blood drawn & to get a short hormonal treatment because her red blood cells are low. It's due to the kidney situation.

Jackie (johnston826@netscape.com)

Sunday, June 27, 2004

Everything is going well! Juliett is happy to be finished with some medicines she was taking for the infection she had a few weeks ago. She doesn't like having to take so much medicine, but she always does fine as long as somebody holds her hand. She's still carrying around her nunu bag & won't give any up. She had about 12 last time I checked. She even has a flashing nunu that was given to her by a friend. It's cool! We're all trying to get back to a normal life. Is that possible?

MAMA JACKIE

Thursday, June 24, 2004 1:20 AM CDT

Hi,

We're so happy because Juliett only has to go to clinic every other Tuesday from now on. She no longer needs a chest x-ray every visit either. I had to collect her urine over 24 hrs recently & realize that this child doesn't potty often. We're going back for another GFR of her kidney at Ochsner on Fri, July 2. I hope we get good news!

Juliett is still taking late naps & then staying up late at night, but I hope to fix her soon. Keep ya'll posted...

Jackie

Sunday June 20, 2004 10:12 PM CDT

Father's Day!
Thank you Juliett and Jourdan for making it a GREAT Father's Day. I am so very proud to be your Dad. Jourdan, you are a GREAT big brother and you help out so much with Juliett. You have done so well in school while having a sick little sister. I am proud of you and I love you. I know at times you like to tease her and make her mad but we know how much you love her.

Juliett, my PRINCESS! You are so cute and beautiful. I love you so much. You are the sweetest little girl I have ever known. You make me laugh when we are together. You are awesome! You say "when my cander goes away I can have more people around me"......that day will be soon, sweetheart, I promise. I will do anything I can to make sure of it.

Thanks again, J&J, for making me proud to be your daddy.

I love you!

Friday, June 18, 2004 1:08 AM CDT

Hi everyone!

Juliett is doing great! She's eating alot & picking up weight. Her hair has not growing back & she's anxiously waiting for it to come back. Juliett had a GFR at Ocshner which shows that her kidney is only functioning at 30%. THIS IS NOT GREAT NEWS!!!! Being that she only has one kidney...I can't help but wonder why couldn't her good kidney be on the other side. Before her transplant her kidney function was about 70%. We've decided not to give her the accutane for now.

We're enjoying the summer...Juliett is staying up all night & sleeping till the afternoon & so is Jourdan. I hope ya'll are too!

Jackie (johnston826@netscape.com

Tuesday, May 25, 2004 10:42 AM CDT

Juliett is improving somewhat but not by much. Her kidney function has improved slightly but she still has blood in her urine. This happens after she receives blood so there is obviously a filtration problem going on. The doctors have been reluctant to release her since her kidney is not functioning normally and she could dehydrate if she went home too early. The doctors are also discussing a kidney biopsy which is a surgical procedure. I am very concerned that her kidey has had all it can stand from the chemo, transplant, radiation and accutane. She is hanging in there! She feels really good, plays a lot, eats great but internally there is a problem. At least she is not in any pain. Thanks to everyone who has signed her guest book wishing her the best. I greatly appreciate it!

Jeff

Friday, May 21, 2004 3:23 PM CDT

Juliett is not doing so well. She has been on Accutane for a week and has had trouble. She has been in the hospital for a few days now. She has blood in her urine and her kidney is not performing as is should and has shown scarring. We are in a "wait and see" mode. Perhaps the radiation damaged her kidney. They have stopped accutane, bactrim and acyclovir. She is in good spirits but her kidney can only withstand so much.

Please say a prayer for her.....she has come so far to lose now.

Jeff

Sunday, May 09, 2004 4:29 AM CDT

HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY TO YOU!

HAPPY BIRTHDAY DEAR JULIETT..........HAPPY BIRTHDAY TO YOU!

Juliett is four years old today! She is such a big girl. We have so much to be thankful for on Mothers Day. She is doing well and is happy. She has a lot of presents including Barbie, Dora and the usual. She loves opening gifts and is so polite in saying thank you to everyone. It it hard to believe it has been almost a year since she was diagnosed. This day last year we were in Children's Hospital having an X-ray because she was vomiting and the doctor thought it was a virus. We have all grown so much. June 2nd will make a year that she was diagnosed. I have mixed feelings about that dreadful date......sad that she was diagnosed, mad that she has cancer to begin with and joy that she is in remission after only one year. Above all, I am very grateful to everyone who has prayed and cared for her. She is remarkable and I am so proud that she is our little girl.

Dad

Thursday, May 6, 2004 10:04 AM CDT

Hello everyone! It has been a while since this has been updated. Juliett is moving right along. She will begin Accutane soon and has been doing well. Jackie took her, Jourdan and other family mambers to see the Disney Princess on Ice show last week. She had a great time! She likes all of the characters: Cinderella, Belle, Mulan, Ariel, all of them. She looks GREAT!

Her hair still has not come back yet but it shouldn't be too long. She has been having fun playing Barbie dolls with everyone who is willing to play. She is still wearing her mask when outside. Recent test have shown bacteria in her urine and high liver enzymes so we really have to be careful with her. Dr. Yu says it is probably a result of the radiation.

I read the NB support discussion board often and not everyone is as fortunate as Juliett has been. I wish these kids did not have to go through this horrendous fight with such an awful cancer. They are such FIGHTERS! God bless them all!

I will update this site more frequently. ;-)

Jeff

Monday, April 12, 2004 9:41 AM CDT

Juliett had a wonderful Easter! The Easter Bunny brought her candy, clothes and Barbie dolls. She was so excited. Dad took her to Old Navy where she picked out clothes she liked. She loves to pick out her own matching clothes. She spent Sunday afternoon at mom's with her mom, grandparents, brother Jourdan and cousins.

She has two more days of radiation and she will be done. Her doctors last week said she was officially in remission. That is a word that everyone has been waiting to hear. She has been NED (no evidence of disease) for a while but remission is a big step. Everyone is so proud of her. She has come a long way since being diagnosed June 2, 2003. KEEP UP THE GOOD WORK, JULIE!

Thursday, April 1, 2004 2:09 PM CST

HAPPY APRIL FOOLS DAY!

I wish the past eight months was an April Fools joke but it hasn't been. Juliett is continuing her radiation and is doing well. We are waiting for results of the MIBG test. She has been great! Her appetite has improved and she has been happy.

Friday, March 26, 2004 10:37 AM CST

Juliett had a WONDERFUL time last night. Dad took her to see Dora the Explorer at the Saenger Theatre. She had a blast. She played in the lobby with the oversized Dora toothbrushes, Dora legos and carboard cut-outs before the show started. She kept asking when the show was going to start. Everyone was so nice to her. She wore her mask and was very careful. She did not know the surprsie waiting for her. After the show, Anna the stage manager brought Juliett and I backstage to meet DORA. Juliett was so shocked she became shy! She warmed up really quick. Dora held her, hugged her and gave her words of encouragement. She also gave her an autographed picture, poster, key chain, toothbrush and more. Juliett was so happy. That made her night. I told them her story and how this was the first night she had this much fun in a LONG TIME!
Thanks to everyone at the Saenger Theatre for making this happen. Look at the photos section to see Juliett's picture with Dora.

Jeff

Wednesday, March 24, 2004 8:40 PM CST

Juliett is doing well! She had her first round of radiation today and she did very well. She laid completely still while the machine did the work. It was a little frightening at first with the lights being turned off and the green lasers everywhere but she proved to be a big girl! I am so proud of her. She is awesome!

Monday, March 22, 2004 4:23 PM CST

We met with the radiation team at Touro today. Juliett will begin radiation next Monday. She will have 15 rounds of radiation in total. She had X-rays today as well as a CAT scan. Her radiation doctor said she will be the first pateint they have treated with only one kidney. The dosage will be reduced to avoid irreversible kidney damage. The machines looked scary but Juliett was brave once again. She is great! How these kids find the strength I will never know. I saw a book at the hospital that I would recommend to everyone. It is called "Angels & Monsters". It is a collection of drawing by children affected by cancer. It gives you insight of how these kids feel with their disease through the drawings and descriptions. It is an excellent book!

Jeff

Friday, March 12, 2004 11:25 AM CST

SORRY FOR THE DELAY IN WRITING!
Juliett is doing very well. She had a bone marrow aspirit yesterday and we are waiting for the results. Her counts have improved and she has been eating more as the days go by. She seems to be doing well but as we all know, we have to keep a close eye on her. Nueroblastoma is nothing to play around with. Have a great weekend!

Jeff

Tuesday, March 2, 2004 09:33 AM CST

Today her central line will be re-inserted! She spent the night in the hospital and wasn't too thrilled. She watched Scooby Doo a few times and her mom says she didn't sleep too well. Hopefully, she will go home this afternoon. ;-)

Monday, March 1, 2004 12:31 PM CST

Juliett has a clinic visit today! She will have an IV until her central line is re-inserted. She may have to stay overnight if they can't fit her in the surgery schedule. She is not happy about returning to the hospital. At least she won't be in isolation.

Sunday, February 29, 2004 10:28 AM CST

Juliett's central line came out today for the second time since June. She has been getting TPN through a tube since she hasn't been eating. Her mom called the ER and they said as long as she drinks she will not have to go in. When she saw the bags being packed for an overnight stay...she started drinking! Otherwise, she is doing well.
She has a clinic visit tomorrow and they will try to schedule her for surgery.
DAD

Thursday, February 26, 2004 10:57 AM CST

Juliett spent the night at home with her mom. She was happy to go home and very emotional. She was very happy to see her brother, Jourdan. She is doing well and had a clinic visit this morning. She will have many clinic visits to follow! She wants to play with her dogs but can't because of the threat of germs. ;-(

She has been playing with her Barbie dolls and makeup (nail polish). She loves to have her nails polished. SUCH A GIRL!

Wednesday, February 25, 2004 9:52 AM CST

Juliett is going home today! Her counts have risen sharply and she is excited to be going home. She has spent three weeks in transplant and has done very well. The doctors have praised her for recovering so quickly in only three weeks. She will be under close supervision since her immune system is still at risk. Jourdan is very happy to see his sister again. Her special face mask looks very serious but it is there to protect her. Thanks to everyone who has signed her guestbook. I appreciate the thoughts and prayers.

Dad

Tuesday, February 24, 2004 2:02 PM CST

Happy Mardi Gras! Juliett watched the parades on TV and told me (dad) that she wanted to be there. I told her she couldn't get wet. I also told her that this time next year she will be watching every parade she wants to! She totally missed Mardi Gras this year. We do have some good news........she may be released tomorrow! Wednesday will make three weeks that she has been in transplant. she has done very well overall. Her counts have risen dramatically and her urine output has increased. She has kept her sense of humor. She LOVES watching Scooby Doo!

Friday, February 20, 2004 2:10 PM CST

Juliett has been in transplant for a little over two weeks! She is half-way through (hopefully). Her counts are starting to rise and her mucositis is getting better. She is still not eating too well but it is not surprising. Her urine output has improved but not by much. It looks like her kidney and liver have not been damaged. Unfortunately, she will miss Mardi Gras entirely.....a small sacrifice. She has been through so much and everyone is so proud if her.

I (DAD) bought her a little pink satin bag to keep her nu-nu's in. She has about six now. She always lost track of where they were and now she has a bag to hold them in. She likes to collect them. There is only one that goes in her mouth........the others are for holding.

Wednesday, February 18, 2004 9:38 AM CST

Juliett is having a bad time with the mucousitis. She is throwing up mucous and blood day and night. She holds her nu-nu tight for security. Jackie has been with her at night while I (dad) take care of Jourdan. Jourdan is worried about her and misses her very much. It is difficult to explain how serious and important the transplant is to him. There have been two kids who have died this month. There are a few others who are in far worse situations than Juliett. You can't help but feel for those parents who face the impossible.

In the coming days, Juliett's counts will rise and hopefully the transplant will start to show some positive results. She is such a sweet little girl.

Tuesday, February 17, 2004 12:09 AM CST

Juliett is doing ok! The doctors are worried about her kidney function. She has not been urinating as much as she should with the fluids she has been getting. They did an ultrasound yesterday and we should have the results soon. The abdominal scan showed her liver is in good condition! GREAT NEWS THERE! Keep your fingers crossed for her kidney.

Juliett has had mucousitis really bad. It is awful to see her go through this but she is a very strong girl. Just when you think she has had enough, she surprises you again.
She spits out the mucous and blood, wipes her mouth and asks "where's my nu-nu's (pacifiers)?"

I hear everyone say children are so resilient. I think resilient is overused and an understatement. These kids are fighters who are fighting a disease that is relentless. Juliett and kids like her are heros. They take everything that the disease and the doctors give them and they keep on fighting. I am so proud of her. Like her Maw-Maw says, she has been through in 8 months what an adult doesn't see in a lifetime! How true! I think in some way this diease has taught her valuable lessons about fighting and not giving up. I think we all have learned. Everyone has been so supportive of this little girl and it is greatly appreciated. She is awesome!

Tuesday, February 17, 2004 12:09 AM CST

Juliett is doing ok! The doctors are worried about her kidney function. She has not been urinating as much as she should with the fluids she has been getting. They did an ultrasound yesterday and we should have the results soon. The abdominal scan showed her liver is in good condition! GREAT NEWS THERE! Keep your fingers crossed for her kidney.

Juliett has had mucousitis really bad. It is awful to see her go through this but she is a very strong girl. Just when you think she has had enough, she surprises you again.
She spits out the mucous and blood, wiper her mouth and asks "where's my nu-nu's (acifiers)?"

I hear everyone say children are so resilient. I think resilient is overused and an understatement. These kids are fighters who are fighting a disease that is relentless. Juliett and kids like her are heros. They take everything that the disease and the doctors give them and they keep on fighting. I am so proud of her. Like her Maw-Maw says, she has been through in 8 months what an adult doesn't see in a lifetime! How true! I think in some way this diease has taught her valuable lessons about fighting and not giving up. I think we all have learned. Everyone has been so supportive of this little girl and it is greatly appreciated. She is awesome!

Wednesday, February 11, 2004 12:51 AM CST

TRANSPLANT DAY!

Juliett is doing well. She was infused with her stem cells this morning. The chemotherapy has started to create mouth sores (mucositis) and she is not very happy. Dr. Yu met with her and started the infusion this morning. She was wondering what all of the fuss was about. Her counts should begin to pick up in 7-10 days. She is an amazing little girl. She has not mad a big deal about being confined to the room. That makes things a lot easier.

Monday, February 9, 2004 12:45 AM CST

Juliett had a good weekend. She ended her chemotherapy and is now on fluids only. She has become restless but not too bad. We have decorated her room with posters and pictures to make it more enjoyable. There was a radiothon to raise money for Children's Hospital and almost $900,000 was raised. Juliett was even on the local news. She is doing well and everyone is so proud of her. She has been taking her medicines without any problems. She is a BIG GIRL!

Thursday, February 5, 2004 1:51 PM CST

Juliett is doing very well! She is on her third day of chemotherapy. She has a lot of questions about why she cannot leave the room. She knows there are germs that can hurt her if she leaves the room. Her toys have to be new and she is watching a lot of cartoon and movies.

Tuesday, February 3, 2004 0:31 AM CST

Juliett will be admitted to Children's Hospital in N.O. Tues, Feb 3 and transplant will take place on Wed, Feb 11. I am so anxious I can't bring myself to pack yet. I know she has to have this and that she's going to be fine, but I can't stop wondering if we've made the right choice.

I know it's going to be rough because Juliett can't stand to be in her hospital room for long periods of time. (hmmm... reminds me of her daddy). She's going to miss her bubby Jourdan terribly too. He's really worried about her!

We'll keep ya'll posted. THANKS!

Jackie Johnston tiger5468@aol.com

Friday, January 30, 2004 1:19 PM CST

Juliett is doing wonderful! She is gaining weight and ready for the stem cell transplant. Her hair is coming back and she is happy. She doesn't know much about the transplant and we hope that it is not too harsh for her. She will be in for about a month. ;-(

Her mom took her today for her MIBG test. She had tests all last week including kidney scan, bone scan, EKG, etc. We hope everything comes back negative. She is a special little girl.

Monday, January 19, 2004 1:51 PM CST

Juliett had a great weekend! She loves playing with her Barbie kitchen and toys. She has had so much fun with her brother, Jourdan. Jourdan had a doctors visit last week. He had to get his finger pricked for blood. He cried for a while before they actually stuck him. Juliett, noticing that he was crying, gave helpful advice. She told him "don't worry, Bubbie, it won't hurt. They do this to me all the time!" She was so concerned over her brother crying that all she wanted to do was comfort him. In actuality, they rarely take blood from her finger. It is usaully taken from the arm or central line. She is truly amazing!

I took her over the weekend to buy clothes. She LOVES Mary-Kate and Ashley clothes. She recognized the faces on the tag. ;-)
She then wanted to slide the debit card through the machine.
She is growing up fast!

Friday,, January 16, 2004 1:43 PM CST

We met with Juliett's doctor today at Children's Hospital. Juliett is doing so well. The decision to have her stem cell transplant is a big one! I am very concerned with potantial side effects. Juliett is wondering why she has to go back to the hospital if her "bo-bo" was removed. I tell her "I wish it were that easy, Julie". As young as she is, she has a level of maturity that is uncommon in kids her age. Perhaps it is due to what she has experienced since being diagnosed. It seems she has lived a lifetime since last June. I am so very proud of her. She gives you hope when you think there is none, strength when you are tired of being strong and a reminder that every day is a day to be thankful for. She is my angel and I am so glad that she is in my life. I have read of kids who have recently died from this terrible disease. I cannot imagine the pain the parents are feeling. I read their experience and wonder where do they find the strength.

Wednesday, January 14, 2004 9:26 AM CST

Juliett is doing fine! She has had such a good time recently with her brother. This has been the longest she has been put of the hospital. She has had so much fun playing with her Barbie Kitchen and Barbie cruise ship.

Tuesday, January 1, 2004 10:45 AM CST

HAPPY NEW YEAR! Juliett is off to a gret start! She has had no fever or complications. She was to beging her stem cell transplant on the 28th of December but her mom and I have not come to a decision on if we will go through with it. there are many potential side effects to consider. I am currently getting second opinions from New York and Memphis (St. Jude).

Thursday, December 25, 2003 9:00 AM CST

Merry Christmas! Juliett is in for a surprise! Santa has left her a Barbie "Cook With Me" Kitchen, Barbie vanity, cruise ship, Barbie laptop computer along with dolls. Jourdan has a PlayStation 2 with games, microscope and other things. Juliett was scheduled to start her transplant next week but we are holding off on a decision.

Wednesday, December 24, 2003 5:25 PM CST

Christmas Eve and Juliett is doing well. She had a brief five day hospital stay last week due to a fever but she is out and doing well. She is ready for Sant Claus to come tonight. She wants everything Barbie......Barbie Ship, dolls, car, etc. She will be very surprised when she sees what Santa is bringing! Jourdan is doing well also. He wants Playstation 2. He has been very helpful with Juliett.

Wednesday, December 16, 2003 9:27 AM CST

Juliett went into the hospital this morning with a fever. Hopefully, it is just from a cold. Fever tests came back negative as well as RSV.

Monday, November 24, 2003 4:48 PM CST

Juliett had a clinic visit today and needed blood and platelets. She has a boring weekend since she couldn't do much due to her being neutropenic. She is very happy and is making her list for Santa Clause!

Saturday, November 15, 2003 10:50 PM CST

Juliett was discharged today from the hospital. She was happy to go home. Dad took her to the park and she had lots of fun. There was a skating fundraiser tonight in her name and for Brooklyn at St. Louise. All of the kids had fun. Juliett is looking so good!

Thursday, November 13, 2003 10:33 AM CST

Juliett had a bad day yesterday in the hospital. She was frustrated that she had to stay on one floor and couldn't go downstairs to see the fish in the aquarium. She is doing ok with her chemotherapy and should be finished in another two days. Everyone has been asking about her and is so proud of how she did in the surgery. I can't wait for her to get out of the hospital so I can let her have fun again.
-Dad

Wednesday, November 12, 2003 9:26 AM CST

Juliett went back into Children's Hospital yesterday. She was not happy. She asked why did she have to go back to the hospital if her bo-bo was removed? She is very perceptive. Juliett's tumor pathology report came back yesterday and the results looked really good. N-MYC amplification was not detected......which is great news. She will be in the hospital for a few days for her chemotherapy. Dad took her yesterday to the play area to slide a few times before she would be confined to the Oncology floor. She ate pizza and was happy.

Jourdan was supposed to go back to school today but was very tired and complained of an upset stomach. Jetlag perhaps? He has a lot of catching up to do.
Dad

Monday, November 10, 2003 06:25 PM CST

Juliett & family are leaving New York today for Atlanta. They will be home on Tuesday. Jourdan and Juliett cry to Dad on the phone about coming home. Juliett will have to be admitted for her last round of chemotherapy when she comes home. I can't believe it is her sixth round already. She has been through so much since June. She is a fighter!
Dad

Sunday, November 9, 2003 1:56 PM CST

Juliett was supposed to return home today but her flight was cancelled due to problems with the airplane. She, Jourdan and Jackie are ready to come back to New Orleans. Jourdan has a lot of homework to catch up on but he can do it! Everyone has been so supportive of Juliett. She is loved by everyone. ;-)

Wednesday, November 5, 2003 4:31 PM CST

Juliett will be returning with her mom and brother, Jourdan, this Sunday. She will then begin her last round of chemotherapy. Jourdan has been emailing Dad since he set up his Yahoo mail account. He is very good with the computer and keeping in touch with Dad.

Dad

Tuesday, November 4, 2003 2:40 PM CST

Juliett is recovering well! She is still in New York with Mom and Jourdan waiting for a flight through the Corporate Angel Network. Juliett will finish her last round of chemotherapy when she returns to New Orleans. She is such a big girl! Everyone is so proud of her.
Jeff

Tuesday, November 4, 2003 2:40 PM CST

Wednesday, October 22, 2003 11:30 PM EST

Juliett's surgery was a success! Dr. LaQuaglia removed her tumor in an eight hour operation at Memorial Sloan Kettering Cancer Center in New York. Juliett is in PICU at New York Hospital on York Avenue. She did well through the surgery and her kidney is in great condition. Everyone's prayers have been answered!

Friday, October 31, 2003 10:57 AM CST

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