History

Journal History

Saturday, November 10, 2007 9:08 PM CST

Dear Friends,

It has been a while since I updated this site, so please accept my apologies. It has been a very hectic year taking care of my parents and working at Hahnemann.

Nursing is absolutely the most wonderful job I have ever had. I am able to put my music, desktop publishing, management and caring for others into one. I have never been happier. You have been the guiding force behind me.

I had a patient in April who had a traumatic brain injury. He had visited Philadelphia for his brother's wedding and ended up in my hospital. I worked with him for several months. Towards the end of his stay in our hospital I brought a keyboard into him and taught him how to play again. He is now, 6 months later, playing in New York and teaching children music again!

My daughter is always with me. Her spirit and love guides me throughout the day. There is not a day that goes by that I don't think about her.

But it is not just her who helps me. It is you... her fans... her friends... who keep me going. Your love and admiration have spirited me into a new career, a new life.

Thank you for supporting me and Toireasa. Your love would not have gotten me through.

Don't forget Alex's Lemonade Stand. The Lemonade Ball is in January -- check out alexslemonadestand.org for further details.

I love you all.

Julia
Mom to Angel Toireasa

Monday, June 11, 2007 8:09 PM CDT

My dear friends,

I have been lacking in my updating of this wonderful site, and please accept my apologies.

I want to fill you in on the goings on at Alex's Lemonade Stand. This past weekend was the annual event and again we hit record numbers! Thank you everyone for your support.

CBS3 here in Philadelphia has done a documentary entitled: "Alex Scott: A Stand for Hope." Please check it out!

The Lemonade Stand Website: http://www.alexslemonade.org

Remember without a dream there is no future. Alex and Toireasa had a dream of a world that was free of cancer and pain for all children. Thank you for helping to keep their dream alive.

All my love,

Julia

Thursday, September 22, 2005 10:58 AM CDT

Dear Friends,

Please accept my apologies for not updating this site sooner, but I have been extremely busy in nursing school! Yes I have done it and will be sitting for my boards in April of 2006.

Things have been quiet here other than that...

There's a lot going on over at the Alex's Lemonade Stand site, so please go check it out and do what you can to help.

For those of you who don't know, Alex and Toireasa were the best of friends. Before Toireasa died, she and Alex had a plan... Toireasa was going to do research and Alex was going to do the fundraising.

Well, I've gone back to school for nursing and will then continue on to get my PhD in Neuroblastoma Research. Liz and Jay Scott have continued Alex's dream of fundraising. We are keeping our children's dreams alive.. won't you help to?

There is a lot going on this year with Volvo, Lukoil and various lemonade stands across the country and around the world:

www.alexslemonade.com

We are fighting cancer one cup at a time.

Thank you for all your love and prayers.

God Bless,

Julia

Thursday, April 7, 2005 9:27 PM CDT

Dear Friends,

I know that it has been a while since I updated this site, but things have been very busy here as I have started the Drexel Univeristy Accellerated Nursing BSN program.

First I want to thank my dear friend Melanie and the children of Roosevelt School in New York City. Then held a bake sale in the fall and have donated the proceeds to Toireasa's foundation.

Secondly, this May, Billy Johnstone (Coricopat of Broadway)is producing/directing CATS at the Hartford Academy in Hartford, CT. As is every director's preferece, he has added something new to his production. Billy's addition -- TOIREASA. Yes, Toireasa has been added to the "Naming of Cats" and her character is being played by a lovely young actress. The following is the letter that I wrote to them about Toireasa, our fight and you.

Dear Friends,

I just wanted to take a few minutes out of your class time to say hello and tell you a little about me, my daughter and what CATS means to us.

My daughter Toireasa (Toy-ray-sa) was born January 7, 1997, 8 pounds 9 1/2 ounces at 4:19 pm in Washington DC. She was born with 4, yes 4, kidneys and a balloon in her bladder. At 9 weeks she had her first surgery to open that balloon and prevent the kidneys from failing. Other than that she was a normal kid. She had copper red hair and brown eyes just like her mom.

Then on May 22, 2000, at 3 years and 4 months, she was diagnosed with Neuroblastoma, a devastating form of childhood cancer. Neuroblastoma starts off in the adrenal glands, the ones that sit just above the kidneys, and then spreads rapidly throughout the body affecting all parts of the nervous system. There are 5 stages to Neuroblastoma, and Toireasa had the most aggressive, and the least curable form.

I had introduced CATS to Toireasa as a way of introducing music theatre to her. I am a violist and our whole family is into music in one way or another. When we found out that she had Neuroblastoma and that we were going into the hospital for surgery, she asked me to go home first and get her video of CATS. Well needless to say throughout the recovery period of the surgery and the 5 rounds of chemotherapy that followed, CATS was played constantly -- we went through 2 videotapes that summer!

In July of 2000, Make-A-Wish came to Children's National Medical Center in Washington, DC and asked Toireasa what her wish was. Toireasa turned them away. She didn't want to talk to anyone in the hospital. Well the good-hearted people left telling me that if she changed her mind to call them.

That afternoon Toireasa and I were watching regular TV and a commercial came on announcing that CATS would be closing on Broadway that September. And just as matter of factly as she could, Toireasa announced that she wanted to see CATS before it closed. Well I called Make-A-Wish the next day. Toireasa was released from the hospital the following day and we met the crew from Make-A-Wish at a local mall. The volunteers could not believe that she wanted to see the musical CATS. They tried to get her to go to Disney World, or the San Diego Zoo to see the "big cats". Toireasa told them no and here's what she said:

I want to see CATS on Broadway before it closes. You see the story is a lot like me. My Mairona (aka grandma) is Skimbleshanks because we like to ride the train together. My Papa is Rum Tum Tugger because he's really cool. My Uncle Mike and Stella are Mungojerrie and Rumpleteazer because they are really silly. My Aunt Ellen is Jennyanydots because she loves to dance. My Aunt Sheila is Jemima because she takes care of us. My mommy is Munkostrap because she fights my cancer like he fights Macavity. And you know the ladder at the end? Well it's not a ladder at all! It's the hand of God coming down to give Grizabella a second chance like He is giving me. But Mistoffelees? He is my favorite. He's the magic cat. He takes all the pain away. He even brings Old Deuteronomy back!

Well that floored them. And about a month later we saw CATS on Broadway and met Billy Johnstone for the first time. Toireasa, who wouldn't speak to anyone at the hospital, returned from NYC full of life and hope. She was a changed kid -- everyone was totally amazed.

She collected stuffed cats, and each one of them looked just like the costumes in the video. Her favorite -- of course, Mistoffelees. Misto never left her side, and was the only cat in the history of any hospital to don scrubs and join Toireasa in the operating room.

Then on October 31, 2000 she took a turn for the worse. I got a phone call from Billy who told me that he was on his way down from NYC. And he showed up in full costume! All the kids on the floor loved it -- especially Toireasa who couldn't take her eyes off him. That evening she ended up in ICU attached to several machines and went into a coma. Two weeks later we received a letter from Cameron MacIntosh -- faxed to the ICU! -- telling Toireasa that he loved her and hoped that she got better soon. Well the first time that my daughter responded to anyone was when I read her Cameron's letter. She was taken off the ventilator the very next day. We found out three weeks later she was in remission.

We ended up changing her care to the Children's Hospital of Philadelphia. And the Saturday after Thanksgiving of 2000 we had a luncheon in NYC where most of the Broadway cast members came to see Toireasa. It was an absolutely wonderful time.

She continued to grow stronger until October 2001 when she relapsed. She turned 5 January 2002 and we went to NY where Cameron flew in from London to meet her and Billy joined us for a wonderful reunion.

Toireasa gained her angel wings April 24, 2002 at 4:13 pm watching CATS. On May 1, 2002 her celebration was held at the Shrine for St. John Neuman here in Philadelphia. Among our honored guests were Shidan Majidi (Cameron's assistant) and a young man named Lenny Daniel (Alonzo from Broadway). Memory was sung by a dear friend of ours. Ricky Russell, most recently in the off-Broadway production of Porterphiles was our Cantor and Soloist. But the most beautiful moment came at the beginning of the service when a young dance troupe called Spirit in Motion from New Hope Pennsylvania walked down the aisle in beautiful red robes holding hurricane lamps with candles in them leading Toireasa to the altar. These young dancers were all about the age you are now and were introduced to me by Billy. They have all gone on to college or are in their last years of high school. I stay in touch with them as often as I can.

CATS will always be a part of me and my family. I have met some truly wonderful people from around the world -- and I still keep in touch with everyone of them. From the cast members of Mexico, Australia, Germany, Japan to the numerous fans around the world, I can't begin to tell you how much the FAMILY of CATS means to me. And I can't begin to thank your teacher, Billy Johnstone or begin to repay him for all he has done for my family over the years. He is my friend and confidant. Billy has always there when I needed him.

Toireasa was buried with Mistoffelees in her arm. I have a duplicate here in my room along with Victoria, Munkostrap and a host of others. The collection of CATS memorabilia that has been sent to me takes up most of an entire storage unit. Toireasa was given a computer in April 2001 from a group of fans that stretched all over the world from Italy, Germany, Sweden, Scotland and here in the US. I continue to use this computer every day. One of the most beautiful stories written for Toireasa was the CATS Fans Goodbye. I read it to Toireasa the day before she gained her wings.

There is so much more that I can tell you and if you have any questions at all about CATS, Toireasa's understanding of the musical or just want to say hi, don't hesitate to email me at anytime. Your teacher will give you my address.

Lenny Daniel wrote something at Toireasa's celebration that I want to share with you:

"Up Up Up to the Heavyside Layer! Thanks for teaching us all about the magic and believing in it brings us such strength and courage. Thanks for teaching all us Cats!!"

You are the next generation of CATS. It's more than just a musical. It's a story of hope.

Thank you for keeping Toireasa's Dream alive and I look forward to meeting all of you soon.

Much love and admiration...

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If anyone is near Connecticut in May, and wish to attend, please send me an email and I'll forward to you information on the production.

I promise to update soon, though I say that every time!

Thanks again for all your love and support!

DON'T FORGET --- LEMONADE SEASON IS RIGHT AROUND THE CORNER! LET'S ALL HELP REACH ALEX'S DREAM.

Much love,

Julia

Friday, January 7, 2005 1:32 PM CST

My dear friends,

Today is Toireasa's Birthday and I wanted to take a quick moment to wish every one of you a Healthy and Happy New Year.

There have been some fun things that have happened in the Barry household this past year. The first and most important is that my youngest sister Sheila, the MD. PhD student, Toireasa's Godmother, got married a wonderful man who helped and stood by us during the most trying of times -- Steve. Thank you Steve for everything that you have done for us over the years and welcome to our family!

The ceremony was absolutely beautiful and the only time everyone in the church cried was when my father walked Sheila down the aisle.

As some of you know, my father has had several mini-strokes and has been recently diagnosed with CMT (Charcot-Marie Tooth, a form of Muscular Dystrophy) and walking Sheila down the aisle was a tremendous feat!

As for me, I have finally finished my prerequisites for nursing school and will begin full time at Drexel University in March. I am keeping Toireasa's Dream alive and will keep you updated on events as they happen.

I apologize for not updating this site more often, but school has been very hectic.

Please keep all our children in your prayers this year, especially those recently orphaned by the tsunami in Asia.

My thoughts and prayers are with each and every one of you and I wish you the utmost happiness in the year to come.

HAPPY BIRTHDAY TOIREASA! I Love You!

Love to you all!

Julia

Monday, August 2, 2004 10:12 AM CDT

My dear friends,

It is with great sorrow that I have to say that our dear, loving Alex Scott gained her angel wings yesterday at 4 pm EST.

It is not something we wanted to happen. For any of us. But, now she is with Toireasa and the rest of our angels watching over us all.

Alex, though, will never be forgotten. She will always be with us. Through her Lemonade Stands, she brought Hope to every child fighting cancer and every parent who watches their child go through it.

She taught us how to laugh in the face of adversity -- "when life gives you lemons, make lemonade!"

She taught us how to be strong when our bodies are weak.

She taught us how to live.

It still doesn't make it right... it still doesn't make it fair. But if we have learned something from what Alex, Toireasa, Lance, Madison and all our angels have done, then maybe it was worth it.

Toireasa once told me that if what she was going through would help another child then it was worth the pain of going through it. I hope that the "adults" of this country and this world will one day listen.

So, as you go forward with your life, think of all our children. The warriors who are fighting every day and our angels who gave their life for the cause. And maybe one day it will make sense to you.

As I continue with my nursing studies, I am meeting people who have in many ways been touched by our children. They see our children as inspirations to change their life.

Don't cry for us. Our children will always be with us. Don't say a prayer for Alex, pray to her. She doesn't need our help, we need hers.

So to Alex, Toireasa, Lance, Madison and all my beautiful angels... THANK YOU for coming into our lives, even for that short time... and teaching us about life, about strength, about hope.

As Toireasa once said...

After all the tears are gone, all that's left is HOPE.

All my love,

Julia

Wednesday, May 5, 2004 11:22 AM CDT

My dear friends,

Two years ago our Angel gained her wings.

It's been a tough two years. But in many ways a magnificent one. This year I decided to NOT spend Toireasa's anniversary at home. I went to Chicago.

My neice Madeline turned 3 on the 23rd, my goddaughter Claire turned 1 on the 22nd and I turned (dare I say it) 35 on the 21st. So with Tesser's anniversary on the 24th, we felt it only fitting that we have A HUGE PARTY! It was absolutely wonderful! There were at least 30 kids running all over my sister's house. Toireasa would have loved it... in fact, I'm sure that she did!

Well, I am in the process of applying to Nursing schools around the Philadelphia area.... SO WISH ME LUCK!!!!

Please know that my heart is always with each and everyone of you. You are my strength... you are my hope. And to Justine... you are my best friend! Lance and Toireasa are truly together!

God Bless You All!

Julia

Thursday, November 20, 2003 12:29 AM CST

Dear Friends.

With Thanksgiving next week, there are a lot of people I want to thank. First and foremost are YOU -- every one of you who visit this site and others like it, who take the time to learn about childhood diseases and then do something about it. I want to thank our children who give us the strength to continue fighting for them. And last but not least I want to thank all our Angels who continue to guide us and watch over all those who are still fighting.

As you know, after Toireasa gained her Angel Wings we created The Toireasa Margaret Ann Barry Endowment Fund for Neuroblastoma Research at Childrens Hospital of Philadelphia. In the past year and a half we have raised nearly $70,000!

This Sunday, Nov. 23, a dear friend of mine, Tim Kuser, is running in the Philadelphia Marathon. His daughter Kristin was diagnosed on July 28, 2002 with Neuroblastoma, went through a rigorous treatment at St. Christophers Hospital here in Philly (7 rounds of chemotherapy and stem cell transplant) and is currently in remission. Tim is running to raise money for Toireasas Dream because without research we will not find a cure.

As of today, Tim has raised $2,025! THANK YOU TIM!!!!!! Please, if you havent already, visit his daughters website at www.caringBridge.org/pa/kuser and then go to www.justgiving.com/PFP/phillymarathon and help us out if you can. Id love to see us break the $5,000 mark for the race, but with only a few days left before the race we are going to need everyones help so spread the word!!!!!

This past summer, we held a golf tournament sponsored by Tir Na Nog, an Irish Restaurant here in Philadelphia. The event was held on Tuesday June 10th at the Rancocas Golf Club in New Jersey and what a beautiful day it was! The days leading up to and just after the tournament were filled with clouds and torrential rains. BUT, the day of the event was sunny and over 70 degrees! (we personally feel that a little someone had a lot to do with that!)

Everyone involved had tons of fun including the employees of Rancocas. I want to personally thank EVERYONE who showed up to play, who helped out during, and those who sponsored the holesincluding:

Hoegaarden, Guinness, Harp, Arway Linens, U.S. Foods, Penn Distributers, Origlio Beverages, Jack Daniels, Capital Wine and Spirits, Red Bull, Budweiser, Ace-Risk Management, Best Beer Guy, Magners, Boddingtons, John Mackey Insurance, Stella Artois, Carlsberg, Bushmills, Jameson, and Kent & McBride, PC.

The reception following the tournament was also a success and I also want to thank the staff at Tir Na Nog for donating ALL their tips for the day!

The total raised was $4,300 quite a feat for the first annual!

Well, I'm off to Chicago to spend Thanksgiving with my sister's family and her daughters Madeline Grace and Claire Margaret. There is a lot I have to be thankful for this year, but what I am most thankful for is the gift of my daughter.

Who WAS Toireasa?
She was a Teacher. She was an Intellectual. She was a Child.

Who IS Toireasa?
She is an Angel. She is my Love. She is my Life. She is my Daughter.

And I thank GOD that He lent her to me for awhile.

Happy Thanksgiving!

Love,

Julia

Thursday, October 16, 2003 10:47 AM CDT

My dear friends...

It seems that I've been apologizing a lot recently for not updating Toireasa's site and again I must ask for your forgiveness. Things have been quite hectic here recently so I'm going to start way back in April when we finally put my parent's house on the market...

It was a little crazy going back and forth between here and Philly... I think my mom drove that route every other day! But her hard work paid off and we got a great offer on the house. The excitement ended quickly after a 90ft tall mulberry tree fell close to the house (actually the two trunks wrapped themselves around the house) after the huge rain fall in June.

Things got even more nutty and we were all under a lot of stress! So much so that I began to blame Toireasa for letting the tree fall on the house.... after all that was the house she was born in.

Well, my little one set me straight! I was up talking to a friend of mine who runs the nearby deli. He is Korean and was explaining to me the myths that Koreans hold regarding trees. All of a sudden I wasn't in the deli anymore.. I mean I was there physically, but I could smell Toireasa again. Feel her hair in my hands and her arms around me. I began to remember all that happened my my room the night before. Toireasa had actually come to me! She told me she was doing great and was with all her friends and that SHE WASN'T THE CAUSE OF THE TREE!!! I got a good laugh out of that! She also reminded me that she is always with me... it's just that I don't remember the talks all the time.

It's now October and I still can smell her and feel her, and I know that she is always around... she has a job to do and has been very busy. There are three instances of her work that I want to share with you.......

#1. A year ago September the neighbor who sat on his steps and watched me bring Toireasa out to the hearse was diagnosed with prostate cancer. He was told to return in two weeks for mapping for his radiation therapy. His wife came to me a week later and told me that he had been having dreams about Toireasa. She knew because she heard their conversations! Her husband went in for the mapping and the technicians could not find the tumors! It has been a year and he is still in remission!

#2. In July, 3 year old Bradley (if you go back in the journal you will see his story too!) was scheduled for his 6 month scans to check for possible relapse. He was diagnosed the day before Toireasa was and had been CANCER FREE for 18 months! His mother Kathy had been having dreams for weeks prior to the scans where she said that the doctors told her that Bradley relapsed. The night before the scan she had the same dream, except that at the end Toireasa was there, standing in water, waving "hello". The day of the scan, her first dream came true. She was on her way home from the scan when the doctors called and told her that Bradley had relapsed and they needed to be back at the hospital the next day for additional scans. Well the next day, the additional scans proved that there were NO TUMORS and Bradley was STILL CANCER FREE! He is currently in school and doing GREAT!

#3. For those of you who read the last journal entry, you will know that I went to Phoenix for a funeral of a little Angel named Madison Elizabeth who lost her battle with this evil beast. On August 30th, I was in bed at 2 am, when I awoke with the urge to check my emails. I saw that Madison's mothers had posted that Madison was in final stages and would gain her Angel Wings soon. I sent Laura the following message... "Laura, you and Madi are in my heart and prayers... know that Toireasa is with her... I promise." Well the minute I sent it was the exact minute that Madison gained her wings. Our Angels were finally together.

===========================================================

There are many other events that have occured since my angel gained her wings. Some have been pretty big like the above and other are every day miracles that sometimes I take for granted. But I know that she is here, helping us, guiding us, waiting to take us home on her angel wings.

Alex Scott continues to do great things in raising money for research and in her fight with this beast. Please continue to check her site posted at the bottom for updates from her. AND... If you or your school would like to host a LEMONADE STAND to raise money for research, please let myself or Alex know and we'll be happy to help you set it up. So far ALEX's LEMONADE STANDS have raised over $100,000 for Childhood Cancer Research! GO ALEX!

Take care and God Bless. We will continue to fight to fufill Toireasa's Dream -- the Hope of all our children that one day the pain will stop!

I love you all!

Julia

Wednesday, September 3, 2003 7:41 PM CDT

Hello Dear Friends...

I know that it has been a while since I updated Toireasa's Page... Please accept my humblest apologies...

I am on my way to Phoenix, AZ to a funeral for our latest Angel - Madison Elizabeth Poncin. She gained her Angel Wings on August 30th.

Please visit her website - www.madisonelizabeth.net/madispage.html

When I get back from Phoenix I will bring all of you up to date on how Toireasa has visited us and others this summer! She is still around doing all sorts of wonderful things!

God Bless You All!

Julia

Monday, May 19, 2003 8:44 PM CDT

Well my dear friends, I am delighted to announce:

The First Annual Tir Na Nog Charity Golf Tournament
Tuesday June 10th at Rancocas Golf Course, New Jersey
Benefiting, of course...

The Toireasa Margaret Ann Barry
Endowment Fund for Neuroblastoma Research
at Children's Hospital of Philadelphia

Each four-player team costs $500, which includes green fees, charter bus service, food and drinks on the course, reception at Tir Na Nog, and some great prizes. There is also an opportunity for hole sponsorship ($1000 per hole).

A $250 deposit is required by June 1st to hold the spot for your team. Places are very limited, so please act quickly. The balance ($250) is due by June 9th. Payment is accepted by Cash, Check, Visa, MC, AMEX or Diner's Club. You may mail a check in, or visit Tir Na Nog to use any other payment form.

For everyone's convenience and safety, there will be a bus service to and from Rancocas at no additional charge. But, as space is limited, please let us know if you will be utilizing this service.

Tir Na Nog, The Phoenix, 1600 Arch Street, Philadelphia PA
Call 267-514-1700 for more information or online at
www.tirnanogphilly.com

As always donations are accepted by sending straight to the fund...

"Toireasa's Dream"
The Toireasa Margaret Ann Barry Endowment Fund
for Neuroblastoma Research at CHOP
The Children's Hospital Foundation
3535 Market Street, Philadelphia, PA 19104

=====================================

And on other news... we have finally put the house in Washington, DC up for sale. The most difficult part was packing up all of Toireasa's belongings, but it's finally done. With any luck the house will be sold soon, and we will finalize our move to Philly!!

I have been back and forth between Philly, Washington, DC and Chicago. It's been crazy! I will be returning to Chicago in July for the baptism of my niece CLAIRE MARGARET (named, of course, after Toireasa), as I have been asked to be her Godmother! Toireasa would be proud, and I know she is.

I just want to take a few more lines to thank each and everyone of you once again. We have almost reached the first tier of the foundation and with your continued support, faith and love I know that we will find the way to stop the pain for all children.

God Bless You All!

Julia

Thursday, April 24, 2003 4:34 PM CDT

My dearest friends,

One year ago today, Toireasa gained her angel wings and joined her friends in heaven. A lot has happened over this past year and things are still going very well.

We have raised around $70,000 so far for the endowment fund and donations still continue to come in. THANK YOU!!!

The golf tournaments are still being finalized. It looks like Tir Na Nog's will be held around June 11th and Fado's will be held the second week of July... Keep in touch for the updates!

There have been many inquiries about the endowment fund so I'm posting the address below.

I just wanted to say Thank You to everyone who has helped over these past 3 years, and especially over this last one. Your faith and love has given me the strength to continue to fight to keep her dream alive, because you do every day.

Please keep in touch! And I will update again real soon!

I love you all!

Love,

Julia

TOIREASA'S DREAM
The Toireasa Margaret Ann Barry
Endowment Fund for Neuroblastoma Research
The Children's Hospital Foundation
3535 Market Street
Philadelphia, PA 19104

Monday, March 17, 2003 11:21 PM CST

My dearest friends,

One year ago today, we began that final journey. It has been an amazing year! Know that each and everyone of you are in my heart and daily prayers.

Here are a couple of updates...

#1... The Golf Tournaments have still to be "officially" scheduled so as soon as I have some SOLID dates I'll update you all.

#2... Comcast CN8 is doing a follow up on Toireasa, they have been over and interviewed Dr. Maris at CHOP and Alex Scott, Toireasa's dear friend who helped us raise over $30,000 with ONE (yes I said ONE) Lemonade Stand -- you may know her from the CIGNA ads in all the magazines!

#3... This one is the best!
Ken Merriman, manager of Tir Na Nog, and one of the bartenders, Tim, shaved their heads on Friday night in honor of Toireasa and raised somewhere around $3,000 for Childhood Cancer Research!!!! WHOOOO! HOOOOO! It was an absolute blast! We had two fabulous hairdressers come in from Style of Man at The Shops at Liberty Place, who preformed the shaving! The bar was PACKED! And the money was flowing! A very special THANK YOU goes out to everyone who was there! And a BIG HUG for Ken and Tim! I love you guys!

So that's it for now. I'm seeing Toireasa more and more these days as the weather warms up and all the kids and their parents come out of their winter hibernation! It is a beautiful thing to see a child smile!

THANK YOU FOR KEEPING HER DREAM ALIVE!

I love you all!

Julia

Tuesday, January 28, 2003 at 09:15 AM (CST)

My dear friends...

Please accept my humblest apologies for not updating this wonderful site sooner, but as you will see reading on it was worth it.

The holiday season was rough, I admit. Her birthday, January 7, was even more difficult. BUT, all of your cards, emails and phone messages made it much easier. THANK YOU! Your support is much appreciated and know that you are all in my prayers every day!

Now on to the good news...

We are in the process of scheduling 2 Golf Tournaments for TOIREASA'S DREAM! Yes TWO!!! The first will be sponsored by Tir Na Nog Irish Bar and Grill and held sometime around the end of April and the beginning of May. We are in the process of signing up sponsors, so as soon as I have a date I will pass it on! It's sure to be a fun time!

The second will be sponsored by Fado Irish Bar and held in mid-July. You all remember Fado -- Toireasa's favorite place to go! Well the old manager of Fado is now the manager of Tir Na Nog... so it's all in the family!

Please keep checking back and keep Toireasa in your hearts as I know she keeps all of us in hers.

God Bless!

Julia

Wednesday, December 25, 2002 at 07:19 PM (CST)

Merry Christmas Dear Friends.

Someone sent me a poem today... really a Christmas message.
After reading it I thought I should share it with all of you because it really is for ALL of us!

==========

Christmas In Heaven

I see the countless Christmas trees around the world below
With tiny lights, like heaven's stars, reflecting on the snow

The sight is so spectacular, please wipe away the tear
For I am spending Christmas with Jesus Christ this year

I hear the many Christmas songs that people hold so dear
But the sounds of music can't compare with the Christmas choir here

I have no words to tell you the joy their voices bring
For it is beyond description, to hear the angels sing

I know how much you miss me, I see the pain inside your heart
But I am not so far away, we really aren't apart

So be happy for me, dear ones, you know I hold you dear
And be glad I'm spending Christmas with Jesus Christ this year

I sent you each a special gift, from my heavenly home above
I sent you each a memory of my undying love

After all, love is a gift more precious than pure gold
It was always most important in the stories Jesus told

Please love and keep each other, as my father said to do
For I can't count the blessings or love he has for each of you

So have a Merry Christmas and wipe away that tear
Remember I am spending Christmas with Jesus Christ this year

==========

May you all have a very Blessed Christmas and a Joyous New Year.

Love,

Julia

Friday, November 01, 2002 at 09:00 PM (CST)

My dear friends,

It has been a while.... and there's a lot to update you all on!

First, I want to thank all of you for your constant notes of encouragement here on the website... You help me make it through each and every day.

Yes, it's been six months since I lost my little one --- we lost our princess. And in those six months an incredible thing has happened, we've all grown closer, and more and more people are learning about this devastating disease.

When I started the endowment fund 6 months ago, I had hopes and dreams of it, but wasn't really sure how it would go. As of today we have in close to $40,000! THANK YOU! Our first goal is $150,000 by April 1, 2003 so we can have the offical announcement of the Toireasa Margaret Ann Barry Endowment for Neuroblastoma Research on April 24th, 2003, her one year anniversary.

SO KEEP SPREADING THE WORD!

I haven't updated since July because my brother was getting married in September and things were a little hectic... getting my dress, the dinners, the reception... lol

But I have to tell you that Toireasa was there the day of the wedding -- September 28 -- here at Old St. Mary's in Philly. She, of course, was the flower girl, and her basket with all her flowers was placed on the altar. After the wedding mass, the flowers were brought over to the Shrine to St. John Neumann and placed before him.

I'll post pictures when I get them.

We have lost another child to Neuroblastoma. Toireasa's dear friend John Russell. I know that Tesser was there waiting for him to show him around!

There are numerous families coming to CHOP now for the MIBG treatment that Toireasa went through last December and January. Although we all know that it is not the magic bullet, it does improve the quality of life that all our little ones desire so much. I try to visit them when they are here and show them around.

In fact, I spend quite a lot of my time at the hospital these days. A day does not go by that I don't hear from a doctor, nurse or parent that they thought of Toireasa and she brought them peace and hope. Being at the hospital and around all the kids brings me peace and hope. I know we will find the cure, but I know it will take time, and time is what our kids do not have.

Thanks to clinical trials like the MIBG at CHOP, we are giving our kids more time... whether it's six weeks or six months. That's the importance of research!

As the holidays approach, it's getting harder and harder to realize that she is gone, but keeping her dream alive of finding the "way to stop the pain" is making it easier.

I'll be updating again real soon, I PROMISE!

Until then, keep the dream alive! She's always with us.

Love,

Julia

Donations may be sent directly to...

TOIREASA'S DREAM/CHOP
The Toireasa Margaret Ann Barry
Endowment Fund For Neuroblastoma Research
The Children's Hospital Foundation
3535 Market Street, Suite 1300
Philadelphia, PA 19406

Wednesday, July 31, 2002 at 11:34 AM (CDT)

Hello Dear Friends!

Please accept my humblest apologies for not updating this sooner! It has been rather hectic these past 6 weeks! Let's see, the last I told you about was the upcoming lemonade stand...

Well, our little princess ALEX, had an absolutely wonderful time and the people of Philadelphia opened their hearts! Six year old Alex, who has a heart of gold, raised over $15,000 with one little idea of continuing her friends dream.

I just have to say THANK YOU to ALEX, her wonderful brothers, her mom and dad, and to everyone who showed up that day or sent letters because they couldn't make it. It was overwhelming to see all the kids who showed up running around and playing... the love that all of you showed was incredible.

A special thanks to Billy King, GM of the Philadelphia 76rs. You didn't have to make the trip, but you did!

YOU ALL HAVE A SPECIAL PLACE IN MY HEART!

I then went to Chicago for a weekend conference on Neuroblastoma. It was wonderful to see all the kids who are still fighting and the doctors who I have spent many an hour on the phone with over the past 2 years.

I learned quite a bit about the advances in Neuroblastoma, mainly for Stage 1 and Stage 2 (they have a 95% cure rate now). Neuroblastoma Stage 4, high risk, which is the stage Toireasa was, still does not have a good cure rate... WHY? I hear you ask... That's the problem, we don't know... And this is why RESEARCH is so important.

Toireasa made me promise that I would find a way to stop the pain. The ONLY way we will find it is through intense RESEARCH.

Neuroblastoma is often called the "orphan disease" because no one talks about it or much less knows about it. It is the most painful of all the childhood cancers because of it effecting the nervous system. And now I've decided, ok well Toireasa decided, that I will help fund the research needed.

AND THANKS TO ALL OF YOU WE'RE GETTING THERE!

As of today, we have in over $25,000! That's 10% of our Endowed Research Fund Goal! And we've done it in only 3 months!

We are still out there looking for Corporate Donations that will help us move along faster, I'm still working on putting this journal together as a book, and there are some other ideas floating out there, but...

I thank all of you for openening your hearts when you didn't have to.

WE COULDN'T HAVE MADE IT THIS FAR WITHOUT YOU!

It's been three months since God took her home. The fund is growing. And, I'm finally back at work.

Life Goes On...

Her Dream Lives On....

All my love,

Julia

Tuesday, June 11, 2002 at 02:26 PM (CDT)

My Dear Friends,

It has been a wonderful weekend! The Breakfast Bowl for TOIREASA�S DREAM was a big success. Cheering on the cyclists in the U.S. Pro Championship was a thrill. We celebrated Toireasa�s favorite saint too. Report on the endowment fund is first.

****************************************

ALEX�S LEMONADE STAND � JUNE 22nd

What a beautiful picture of Alex Scott with the article on her �Cups of Kindness� by Lucia Herndon (Inquirer�s INDEED, page 68, June 9th). Alex is a young lady from Connecticut who has been battling neuroblastoma for five of her six years of age. Currently, she is undergoing treatments at CHOP. This is her third lemonade stand. Alex is joined by three families in Connecticut who hold their own lemonade stands simultaneously with her stand each year. She recognizes the need for intense research to eradicate this devastating cancer. Thus, Alex has requested that all proceeds this year go directly to TOIREASA�S DREAM.

Ironically, Alex�s Lemonade Stand follows immediately after the International Conference on Neuroblastoma Research, June 17-19, 2002, Paris, France. The CHOP Oncology Group is presenting twenty four research papers on various aspects of neuroblastoma, both as a unit and in conjunction with other national/international research facilities. Please join us at Alex�s Lemonade Stand on June 22 from 11:00 am to 2:00 pm, 267 Henley Road, Wynnewood, PA (Henley Road runs from US1/City Avenue to Remington Road in Lower Merion Township).

A sincere thank you to all who have made a donation to TOIREASA�S DREAM/CHOP. All monies received are tax deductible (501.c3) and go directly into The Toireasa Margaret Ann Barry Endowment Fund for Neuroblastoma Research at Children�s Hospital of Philadelphia (CHOP). The Fund has three levels: Endowed Research; Endowed Fellowship; Endowed Chairs. Our first goal is to fill the Endowed Research level of $250,000. In less than a month since establishing the Endowment we already have met 4% of that first goal.

Donations may be sent directly to:

TOIREASA�s DREAM/CHOP
The Toireasa Margaret Ann Barry
Endowment Fund for Neuroblastoma Research
Children�s Hospital of Philadelphia Development Office
Attn: Carl Swansen
3535 Market Street, Suite 1300, Philadelphia, PA 19104

For More Information On The Fund Call 215-769-6904 or 215-590-4016.

****************************************

BREAKFAST BOWL A SUCCESS! -- JUNE 7th

Hats off to the ENTIRE TEAM at 92.5 WXTU: Andie Summers, Scott Evans, Amy B., �The Philly Guy� Mark Vizza and Joe Ceccola. Tune into these individuals with the Big Hearts every morning from 6 am to 10 am. Log onto www.925xtu.com to register your own personal Thank You or call 610-667-9000.

Cecil Martin of the Philadelphia Eagles was a very supportive presence. Krispi Kream donated donuts. Lisa Pecona of Secane, PA (610-328-7000) donated massages by the minute. Silent Auction items included: Dale Earnhart Autographed Poster; Philadelphia Eagles Bowling Ball; Kenny Chesney�s Autographed Shirt; J.Crew Gift Certificates; Autographed Ballet Slippers and Ballet Tickets from The Pennsylvania Ballet; Fado T-Shirt, Hat and Dinner Certificate; April Cornell Gift Certificate; just to name a few!

The Bowling Palace of Downingtown donated its beautiful facilities for this event. A special THANK YOU to KEN MEAKIN, manager, and his entire staff for a super family fun event! Visit The Bowling Palace of Downingtown, 977 Lincoln Highway (Business Rt. 30), Downingtown, PA 19335� call 610-269-9999 for directions and league information!

****************************************

A SAINT�S CELEBRATION � JUNE 8th

Toireasa had great devotion to St. John Neuman. Even as Neuroblastoma took over her body, her devotion to this Saint never waivered. On June 8th, we joined 2000 pilgrims in celebration of the 25th Anniversary of the Canonization of this Beloved Saint and Former Bishop of Philadelphia

****************************************

TOIREASA & CASSIE

In February, 2002, Toireasa learned about a bird with special needs at the Academy of Natural Sciences. Toireasa said she chose to sponsor �Cassie�, the African Grey Parrot, because Cassie had special needs just like her. Toireasa visited �Cassie� on April 1st 2002 to make sure that she was taking her medicines and food correctly. Toireasa was very proud of �Cassie�. �Cassie� was found wandering in Fairmount Park here in Philadelphia over 3 years ago and has been nursed back to health by the staff at the Academy. Toireasa received her own Angel Wings only 23 days later on April 24, 2002.

****************************************

So, as you have read, there have been quite a bit of wonderful things happening in memory of my beautiful daughter. We are going to continue to keep her dream alive even though it is in some ways bittersweet. I, like you, miss her terribly, but she made me promise to find a way to stop the pain.

So that�s what I�m going to do.

I love you all!

Julia

Tuesday, June 04, 2002 at 04:35 PM (CDT)

Support is growing throughout Philadelphia and around the country for the Endowment Fund. THANK YOU! Celebrations include:

* RELAY FOR LIFE luminary tribute May 31st, by Sheila Sullivan in Elmhurst, Illinois.

* The Evans & Andie BREAKFAST BOWL presented by 92.5 WXTU, Philadelphia's Country Station benefitting TOIREASA'S DREAM on Friday June 7, from 6 to 10 am at the PALACE BOWLING ALLEY in Downingtown PA. (located in Ashbridge Commons, 977 Lincoln Highway, aka Business Rt. 30/Lancaster Avenue) PRIZES! RAFFLES! SILENT AUCTION! FAMILY FUN! Call 610-269-9999 for information.

* RELAY FOR LIFE luminary tribute June 8th, by Debbie Oberle in Morton, Illinois.

*ALEX's LEMONADE STAND, Saturday June 22nd, 267 Henley Road, Wynnewood PA, from 11am - 2pm. This is Alex's 3rd annual event. She is a very courageous 6 year old who has been battling neuroblastoma. Proceeds from her lemonade sales have gone to the CHOP oncology department. Toireasa and Alex were good friends. Alex has requested that the monies raised from this year's lemonade sales go directly to Toireasa's Dream. THANK YOU ALEX! WE LOVE YOU! For more information see www.caringBridge.com/page/alexscott (link at bottom of page).

Donations may be made separately to:

TOIREASA'S DREAM/CHOP
The Toireasa Margaret Ann Barry
Endowment Fund for Neuroblastoma Research
Children's Hospital of Philadelphia Development Office
Attn: Mr. Carl Swansen
3535 Market Street, 13th Floor, Philadelphia, PA 19104
For more information on the fund call 215-769-6904 or 215-590-4016

Friday, May 03, 2002 at 07:48 AM (CDT)

We've Done It!

Announcing the Establishment of

TOIREASA'S DREAM
The Toireasa Margaret Ann Barry
Endowment Fund for Neuroblastoma Research
At The Children's Hospital of Philadelphia (CHOP)

This Endowment Fund is part of the Hospital's overall endowment and as it grows it will branch into a Fellowship and an Endowed Chair at the Hospital.

Toireasa's dream was to stop the pain, if not for her then for other children.
This fund will ensure that her dream to find a cure... to find the end to the pain... will one day be reached.

Checks/Money Order Donations may be made payable to:

CHOP/"TOIREASA'S DREAM"

The Toireasa Margaret Ann Barry
Endowment Fund for Neuroblastoma Research
Attn: Mr. Carl Swansen
Children's Hospital of Philadelphia Development Office
3535 Market Street, Philadelphia PA 19104
215-590-4016

========================================

The following is my statement that I read at her funeral... which was absolutely beautiful... thank you everyone for attending, sending prayers and well wishes... we have currently run out of programs. I am in the process of making more if you would like one, please email me your address and I'll get it out very soon. I have also updated PHOTOS -- so check them out!
WE ARE GOING TO KEEP HER DREAM ALIVE!

========================================

A Mother's Statement... A Memory...

Who Was Toireasa...

She was a gift from God, born on a snowy day in January. Even in her very first photo you can see she was a fighter -- fists and all! Her name means strength.

As she grew, she gave me inspiration and hope! I was continually amazed by this child who was born with 4 kidneys,
had 4 teeth at 4 months, 6 at 6, a mouthfull by 8 and was walking at 9 months.

Her first word was "mommy."

She never backed down.
No one could ever tell her she couldn't do something! This was the kid who was using a potty chair at 4 months old!

Who was Toireasa...

She was a little girl who was adamant that her hair was "copper" NOT "red".
That her name was pronounced toy-ray-sa NOT te-ree-sa!

She was a little girl who worked her sleep schedule around my work schedule so we could spend as much time together as we could.

One of our favorite books was "When Mamma Comes Home From Work Tonight."
She had me put it to music -- an irish jig, of course -- and that became our song.

She was a little girl who fell in love with the boy next door and was absolutely convinced that one day they would be married -- whether he liked it or not.

Who was Toireasa...

She was a little girl who was diagnosed with a devastating form of cancer,
and with very little chance, came up with a whole lot of strength and hope.

She was a little child who through 12 rounds of chemotherapy, 4 surgeries and
2 clinical trials, never stopped smiling, never stopped laughing.

She was a little girl who gave strength to others even when she herself was ill.
She was always more concerned about the other children on the floor who were crying than her own extreme pain.

Who was Toireasa...

She was a little girl full of hopes and dreams... jellicle balls and pixie dust.
She was a little girl full of joy
and a little girl full of peace.

Every time we would leave the hospital we had to go to two places -- fado, her irish pub, and here (the Shrine of St. John Neumann) to pray because she told us that St. John talks to God for her and that he is showing us the way.

Even near the end she continued to defy the docs. "1 to 2 weeks" they told us.
She said "HA!" and gave me 4.

We went to the museums, the zoo, dunkin donuts and CVS, made cotton candy and gummy worms. She adopted an African Grey Parrot at the Academy of Natural Sciences, because, as she put it... "someone has to take care of her."

She was always worried about who would take care of us once she was gone. She kept telling me that I "had to get married" because I "had to have another baby" to take care of me.

She promised my mother that she would take care of each and everyone of us when she got to Heaven just like Fr. Hopkins asked her to. "Sure" she said!

She told us of her Angels -- Abeka, Alisha, Aneka and Amelia -- who came to her and told her that they would always be there with her. She told us that her two best friends were already in heaven waiting for her -- Jesus and Mary -- and they are going to watch as many "Scooby-Doo" movies
as they want.

Who was Toireasa...

She was a teacher...
I know I learned more from her than anyone in my life

She was an intellectual...
Her wit and wisdom never ceased to amaze me

She was a child...
With hopes and dreams of being a ballerina and writing her own musical

She is an Angel...
A gift from God, sent here to make sure
that we're doing our best to love one another

Who is Toireasa...

She is my love
She is my life
She is my daughter

And I thank God that he lent her to me for a while...

Friday, April 26, 2002 at 11:48 AM (CDT)

Dear Friends,

Arrangements for the Viewing, Funeral Mass and Burial of Toireasa have been finalized. Please refrain from sending flowers.

TOIREASA'S DREAM through all her sufferings was to find a cure for this devastating disease. Neurblastoma attacks nerve cells all over the body, forms solid tumors that grow at a rapid rate, destroying organs and bones as they develop. Chemotherapy, radiation, surgery, accutane, and radioactive iodine are used to abate the cancer.

These procedures offer varying degrees of relief in each victim. Over 600 children a year are attacked by this disease and less than 5% survive. It is the most common form of solid tumor cancers in children surpassing brain cancer by quite a bit.

Each time a new procedure was offered, we asked Toireasa if she wanted to go through it. Until her last relapse just before Easter, her response was always "Yes, Mommy... I'm still fighting! I'm not ready to give up yet... even if it doesn't work for me, it may help the doctors find a cure.. I want the pain to stop... I don't want any other children to hurt like me." -- TOIREASA'S DREAM.

Little public attention and few funds are dedicated specifically to work on eradicating this cancer. For this reason, a supporting foundation is being established to benefit Neuroblastoma Research at Children's Hospital of Philadelphia (CHOP). This hospital has been ranked 1st in pediatric medicine nationwide and is at the forefront of Neuroblastoma research worldwide. Please hold off sending your donations until we have completed the foundation paperwork.

Funeral Services will be held on Wednesday, May 1st...
Shrine of St. John Neumann
St. Peter the Apostle Church
1019 North Fifth Street (5th & Girard)
Philadelphia, Pennsylvania

Viewing and Tributes 1:15pm - 3:00pm
Holy Mass, Fr. John O'Toole, C.S.S.R., celebrant 3:00pm - 4:00pm

Ample parking is available on three large lots around the church/shrine complex.

An Irish reception will follow from 5:00 pm - 7:00 pm at Fado Irish Pub 215-893-9700, 1500 Locust Street, Philadelphia, PA. Street parking and commercial parking lots are available.

Fado was Toireasa's favorite restaurant. Each time she left the hospital, we had to come here where Toireasa would have her Irish tea with chips, dips and mussels. The Irish music kept her spirits up and she was loved by Fado's entire staff.

Burial will be Thursday, May 2nd at Gate of Heaven Cemetery, 13801 Georgia Avenue, Silver Spring, Maryland 301-871-6500 (intersection of Georgia Avenue and Connecticut Avenue).

Graveside Service 11:00 am

Msgr. William Awalt, celebrant
Vicar of Priests, Archdiocese of Washington
and retired Pastor of St. Ann's Church, Tenley Circle, DC
(Msgr. Awalt baptized, confirmed and gave Toireasa her First Holy Communion)

===========================================

For those who ask "Why the Shrine of St. John Neumann?" The answer is simple... TOIREASA BROUGHT US THERE.

One night at CHOP, Toireasa was watching unsolved mysteries on TV. When I came back into the room, Toireasa told me that the church in the story was right here in Philadelphia. She said, "Mommy, please take me there to the shrine. I want to pray there. He loves little children and he will help me fight my cancer."

Toireasa came back to this shrine for Mass again and again. Even as neuroblastoma took over her body, her devotion to St. John Neumann never wavered.

Once, explaining her devotion, Toireasa said "St. John Neumann prays for me to Jesus who is God." Another time she added, "You know, I have two best friends in heaven... Jesus and Mary." She is with them now.

===========================================

From the time she was diagnosed, Toireasa used the story line in the musical CATS to help fight her cancer. She told us the ladder Grizabella climbed at the end of the show was not a ladder at all... it was the Hand of God reaching down to "carry me up to Him in Heaven." When MAKE-A-WISH Foundation took Toireasa to see CATS on Broadway, she leaned over to the the volunteer who came with us and quietly said...

"I'm going to do that some day!"

Over and over, Toireasa told us...

"When children die, they become angels in heaven and they don't have cancer anymore!"

She told us that she would take care of each of us... And she does.

===========================================

Accommodations...

The closest hotel to our Philadelphia home is the Best Western 215-568-8300 (just off the Ben Franklin Parkway and within two blocks of all the museums). Several other hotels are only a few blocks away in the heart of Center City.

Travel...

By car: I95 south to Girard Avenue; travel west on Girard to 5th Street for Shrine. Email me at address below and I'll send you a map!

By train: Amtrak to 30th Street Station then taxi to Shrine.

By plane: Philadelphia International Airport then taxi ($20) or rental car to Shrine.

===========================================

Those of you who can come, Thank You. If you can not attend, please know that you are with us in spirit.

With all my love,

Julia

Wednesday, April 24, 2002 at 05:15 PM (CDT)

Dear Friends,

At 4:13pm today Toireasa got her wings.

Listening to CATS, and as Mungojerrie and Rumpleteazer crept onto the stage, Toireasa took her last breath.

Her final word was "MOM"

I will let you know when the services have been scheduled.

Know that she loves you as do I.

Much Love,

Julia

Wednesday, April 24, 2002 at 01:06 PM (CDT)

I just wanted to take a quick second and let you know that Toireasa has entered the final stages.

Her breathing is staggered and her blood pressure is gradually falling.

She is listening to "Hey, Mr. Producer" and hearing all the messages and stories that you have written.

We love you all.

Julia

Wednesday, April 24, 2002 at 12:18 AM (CDT)

My dear friends...

These past few days have been very hard. On Sunday we put Toireasa into an induced coma to get her out of the pain. On Monday she began responding to voice commands and turning in the bed on her own. I had no idea that yesterday would lead to the trauma of Tuesday.

At 7:30 am Tuesday morning, Toireasa woke herself out of the coma and into current reality pain and all. For an hour andd a half I struggled with the nurses to get the drugs at the right dose to get her to calm back down.

It was one of the most terrifying experiences that I have ever gone through. I am actually at a loss for words on how helpless I felt this morning holding my child and telling her that we were going to take the pain away and her telling me that it's not working!

We finally got her settled yet again this afternoon she started to come out of it again, but I upped the dose before she completely woke up. The doctors are meeting Wednesday morning to reevaluate what we are doing with her. Never in the history of CHOP has there been a child on this much medication and still be alive.

Physically there is not much bone left it is mainly tumors. The tumors are growing in her bone marrow and breaking through the bone. It is horrifying.

Her will to be here with me is unbelievable. I have told her that it is ok to go with her angels where she won't have any pain anymore, but as always the princess does what she wants to do. I don't know what she is waiting for, but it must be important.

Thank you for your kind thoughts and prayers. You keep saying how brave I am, I'm not, I'm absolutely terrified. And it is you who I should thank for letting me into your homes and sharing my burden on your shoulders. You didn't and don't have to but you do and I thank and love you for your kindness.

Forgive me if I don't update this page every day as some days I am very tired, but know that I at least get in here and print out your notes to read to her throughout the day and night.

Currently she is upstairs sleeping peacefully and I am going to join her.

Thank you again for your love.

I'll be in touch,

Julia

Sunday, April 21, 2002 at 09:00 PM (CDT)

Last night, Toireasa went into severe pain. As I stated in yesterday's post, we were fighting the pain as it was growing.

We unfortunately were never able to catch it. The progression of her disease is such that the pain is unbelieveable. It shoots through her body like a lightening bolt and she was juping off the bed with each one. They looked like seizures, for lack of a better descripition, and were extremely painful.

The doctors arrived this afternoon and at 2 pm today Toireasa was started on Nebutol which took away her conscious awareness of pain, and unfortunately everything else. She is currently in a drug induced coma. But, she is out of pain.

Her final words to me were -- "I love you!"

The doctors say that she can still hear us at some level, so please, continue to post and leave her messages, we will be reading her everything you guys write.

Please remember that she is out of pain for the first time in weeks. And that even though she can no longer tell me how much she loves all your stories, I know she does.

God Bless,

Julia

Saturday, April 20, 2002 at 01:33 PM (CDT)

I don't know where to start so I guess that I'll backtrack to where I left off on Thursday afternoon and bring you to the present.

On Thursday, just about an hour after I updated this site, Toireasa's mouth began to swell. After calling the Nurse and Dr. Maris we came to the conclusion that Toireasa has developed what is called "Thrush." It is kind of yeast infection that effects her mouth, throat, stomach. It has happened because her immune system caput and her body's own flora (bacteria) is starting to attack her.

She can no longer eat solid foods as her mouth and throat are so swollen. We have her on a liquid diet -- thank goodness that Rainbow Sherbet is included!

Thursday evening our friends from Kuwait came for a visit. It was wonderful to see Toireasa talk to Sadeq, Eman and little Rawan. It brightened up Toireasa's day so much.

She was only able to be awake for about an hour and then she collapsed in utter exhaustion. And that is the way it has been since.

Toireasa has very little windows where she is up, awake, alert and out of pain. Most of the time she is sleeping, and when she is awake she is in tremenduous pain. We are constantly upping the medication to take care of it and then she will rally for a little while and then we have to up it again. It's a constant circle.

Right now she is upstairs with my sister Sheila, who has returned from Chicago. All she wants Sheila to do is sit on the floor beside the bed so Toireasa can twirl Sheila's hair. It's a beautiful picture.

The tumors are causing the capillaries in the skin to burst and she has some intense brusing on her left eye and the left ankle. She is checking her mirror daily to see how she looks. She'll then ask for her lipstick and have me apply it (it hurts her to lift her arm), smack her lips together, and say... now that looks much better!

Even through all the pain, Toireasa is still trying to be Toireasa. She doesn't want anyone to feed her, even though it hurts to lift a spoon. She doesn't want anyone to read to her, even though it's hard to see. And she certainly doesn't want you to finish her sentences for her, even though it is hard to speak.

But she does want us to read your posts. She does want us to show the pictures and read your stories. She wants to watch CATS, and Grease and Hey, Mr. Producer! She wants to try and sit up and have me paint her fingernails and toes. And even though her body strength is weakening, her mind is still fighting with every ounce of strength she has.

Yesterday she called to me...

"Mommy, come here I have something important to tell you... Remember, that no matter what happens, I love you very much! Never forget how much I love you. Say that mommy, say you'll never forget!"

I promise Toireasa I will never forget.

I'll keep you updated.

Love,

Julia

Thursday, April 18, 2002 at 11:35 AM (CDT)

Well, these past few days have been utterly fantastic! So please forgive me that I haven't updated it... I've been too tired!

Toireasa is doing very well, considering. Tuesday was a day full of activities including drawing three pictures for my brother as his birthday present. She had a very special visitor who brightened up the day with some beautiful flowers.

She started off the day with me running to Popeyes to get her fried chicken and corn on the cob -- with extra butter and salt. Well the first thing that happened was that her loose tooth came out! So she had to decide what the tooth fairy was going to bring -- cash?... treats?... she said she had to think about it.

Toireasa then spent the evening playing games -- Cranium Cadoo, Disney Charades and (my personal favorite) Candy Land! Of course she won all three!

When we finally got her back upstairs for bed she had made her decision for the Tooth Fairy. So at midnight, Toireasa, at the top of her lungs, informed the Tooth Fairy:

"Tooth Fairy, where ever you are, I want a whole box of Whitman's Chocolates and a bag of Bassets Allsorts! Oh, sorry, PLEASE!"

The next morning Toireasa woke up and immediately checked under her pillow and found a note from the Tooth Fairy... "Couldn't fit everything under your pillow, so follow the notes to find where I've hidden it!"

So the morning consisted of a treasure hunt! It was hilarious. Each "note" (as in musical note) had a riddle in it that she had to solve to find where the next "note" was. She solved every one. And when she found the bag it was full of the chocolates, the licorice, and two extra items, some lip gloss and some lipstick -- pink of course.

She then gave me a shopping list for me for the grocery store... ice cream cake, more rainbow sherbet, olives, to name a few... then she had me remove all the nail polish that we put on monday and change the color to BLUE GLITTER! She looks fabulous. She decided to change the color because it matched her dress!

Dr. Maris came over yesterday afternoon and spent a little over an hour with her. She was laughing through the pain -- and told him a few things too.

Toireasa's pain became quite intense yesterday, her strength and courage continues to amaze me. She is now on even higher levels of dilaudid and ativan. Her body is metabolizing the drugs so there are no toxic effects just nominal pain relief.

This morning Toireasa woke up and yelled for my mother to come and give her a sponge bath because she had some errands to do. So, my mother gave her a bath, Toireasa picked out her dress and we went to CVS (the local drug store) and to Dunkin' Donuts to get a dozen donuts for breakfast! Boy, was that fun!

Currently she is sound asleep behind me. She is resting up because her friend from Kuwait is coming for a visit today, and she wants to be well rested and out of pain.

So, contrary to what everyone thought three weeks ago, the princess is surviving. As her doctor said yesterday, "...she does things in her own way and in her own time!"

How True.

God Bless,

Julia

Monday, April 15, 2002 at 11:15 PM (CDT)

Two Posts In One Day! Can You Believe It???

Ok, so let me tell you how the day started. Toireasa as I said earlier had a rough night. It was more peaceful than the night before, but she still didn't get any sleep. We upped both the dilaudid and the ativan to some pretty powerful levels in the morning and by the afternoon...

Toireasa woke up and asked me to paint her fingernails... and her toes... and do her hair... and find her lipstick (which I couldn't find, so we used the lipgloss instead).

We watched "Thomas and the Magic Railroad" and a "Wiggles" video (whom, I have to say that Toireasa ADORES!). She then asked me for some Rainbow Sherbet (if you haven't had it before -- it's lime, raspberry, and orange mixed -- it's great!) and proceeded to eat an entire bowl! She then washed it down with an entire glass of water!

Mind You, THIS IS THE FIRST SHE HAS EATEN IN OVER A WEEK!

She rested for a little bit and then decided that she had had it upstairs in her bedroom and wanted to come downstairs.

We moved her -- pumps and all -- down the stairs and placed her in her stroller and we proceeded to make Blue Raspberry Cotton Candy -- that's the post I left earlier -- then told me that I had to go get her a McDonald's Cheeseburger Happy Meal!

I'M NOT KIDDING!

But here's the best part...

SHE ATE THE WHOLE THING!

Now, WHY?, you ask, would I put food into her stomach if we believe that it is blocked. Because psychologically, it's better. She told my mom that she needs to eat. That if she didn't eat she would die. So, she decided to eat. Now, what happens tomorrow with all this food in her... I have no clue... but I'll deal with that when the time comes.

Right now, I'm having fun. She just finished another bowl of the Rainbow Sherbet and is upstairs trying to go to sleep. I have to go and give another dose of one of her meds -- maybe that will help.

Keep those prayers going!

We Love YOU!

God Bless,

Julia

Monday, April 15, 2002 at 05:01 PM (CDT)

The wonders never cease!!!!!

Last night was another one filled with twilight sleep, as I am beginning to call it. My mother graciously stayed up with her so I could finally get some shut eye... I was beginning to worry that I would start mixing up the meds if I didn't.

This morning her nurse came over and we reevaluated everything! We upped the doses of the dilaudid and the ativan and we have had an absolutely wonderful day!

It took about 5 hours for it to finally talk effect, but, and you're not going to believe it...

WE'RE DOWNSTAIRS MAKING COTTON CANDY!

Blue Raspberry... Her Favorite!

Well that's it for now... Ill update again either late tonight or tomorrow. Thanks again for all of your prayers! She's still fighting...

God Bless You All!

Julia

Sunday, April 14, 2002 at 09:29 PM (CDT)

It is getting harder and harder to know how to start. Toireasa is getting worse.

We have her pain medication at 35 milligrams an hour and have started her on Ativan as a constant infusion as well.

This afternoon she watched SHRECK with my brother and his fiance and they had a fabulous time. She even told me to go to WAWA (like a 7-11) and get her TicTacs!

This evening though she has progressed downhill. She was talking to "her angels" and was telling them that she was not ready to go yet. She cried in my arms and told me that she didn't want to leave me. I told her that it would be ok because she wouldn't be in pain anymore.

It took a lot of coaxing, but she did get calmed down and relaxed, and then started to talk to Old Deutoronomy and told him that she wasn't ready to go to the Heavyside Layer and wasn't ready to dance the Jellicle Ball but would let him know soon.

She is upstairs watching, what else? CATS!

The doctors have given her till the end of this week, more or less, and we are enjoying every minute of it -- every hug, every kiss, every smile -- and I owe quite a few of those to you as well.

Thank you for all your support and know that we love each and every one of you very, very much.

God Bless,

Julia

Saturday, April 13, 2002 at 06:37 PM (CDT)

This will be short, my apologies, but my time right now is limited...

The past few days have been rough. Toireasa is in tremenduous pain in her abdomen, legs and head. She is sleeping much more than she has recently.

Last night the vomiting started. The tumor in the abdomen has gotten so large that it is squeezing the stomach and she is no long able to take anything by mouth.

We have her at 19 mg of dilaudid an hour and the pain is still not being relieved, so we are continuing to up the dose until we find the right one.

She is on two additional medications to alleviate pressure on the brain as well as (hopefully) alleviate the urge to vomit. We are keeping our fingers crossed that we will be able to stop it for a while.

We are continuing to read all your posts to her and they do bring her happiness. KEEP POSTING!

God Bless Each and Every One Of You and Your Families...

I'll keep you posted.

All my love,

Julia

Thursday, April 11, 2002 at 10:01 PM (CDT)

And the magic continues...

Today was another wonderful day. Toireasa woke up happy and in great spirits! She ate a whole piece of toast with butter and jam and had a cup of tea... I think all you Brits signing on have had some effect on having tea in the morning -- for her its always been a nighttime thing...

She went back to sleep for a few hours and then decided it was time to come downstairs and make a gingerbread house... if you have never done it, its a real treat and takes a very long time! Good thing though, after each step when we had to wait an hour or so, the princess slept for that time.

She went to sleep in the afternoon for a couple of hours again and woke to go to the deli up the street and go shopping! It was a fabulous outing and she had a lot of fun... and even gave the owner a BIG HUG and KISS! Boy was he excited!

We came back home and there was an ambulance infront of our house. Our next door neighbor "Pops" was being taken to hospital. Toireasa did not want to go inside.

She said... "Mommy, what's going on?" I told her that Pops was sick that they weren't sure if it was a stroke or heart attack so they were taking him to the hospital.

She said... "I don't want to go in yet, I have to pray for Pops." She had me position the stroller so she could see the back doors of the ambulance, and clutching her rosary she sat straight up, closed her eyes, and prayed for five minutes.

She then layed back and said... "Ok mommy, it's time to go in."

When we got inside I put her on the couch and she looked at me and said... "I prayed that God would take care of Pops mommy. I know he's going to be ok."

She then decided to have a glass of milk and some chocolate chip cookies and proceeded to drift off to sleep again.

Toireasa is right now upstairs with my mom, curled up and sound asleep. The pressure in her head is getting worse. She can no longer sleep lying down, so we have her propped up and she lies against us -- I am NOT complaining!

It's been a wonderful couple of days and maybe we will have a few more. But, I am enjoying every minute that I have. And I will definitely have some wonderful memories of this beautiful child who God graciously let be my daughter.

All of you have been extremely supportive and I couldn't have continued through this without all of you. You are an inspiration to me and I thank you. I wish that I could meet each of you individually and thank you personally, but know that I love and treasure each and every one of you.

I will keep you posted.

God Bless and Keep You and Your Families.

All my love,

Julia

Wednesday, April 10, 2002 at 11:03 PM (CDT)

WHAT AN ABSOLUTELY BEAUTIFUL DAY!

Toireasa woke up this morning and gave me a big hug and kiss and told me how much she loved me! Oh What A Beautiful Morning!

She went back to sleep for a few hours and then woke up again to tell me that I had to go out and get donut holes for her breakfast! She ate 2 and had a cup of coffee!

Dr. Leahey stopped by for a visit and joined us for coffee! It was a riot... Toireasa wouldn't let the dear doctor have even one donut hole -- "NO! They're Mine! You Can Have A Muffin." quote un quote from the princess.

Toireasa drifted off to sleep again and slept peacefully for about 3 hours when she shot straight up and said "MOMMY! You have to get me out of this mess!" and proceeded to take off her bathrobe, nightgown and tell me that I had to get her a pretty dress and we were going out...

So that's what we did... we went for a walk around the neighborhood, went to the deli and spent over an hour outside in the sunshine.

She then crashed for another few hours until the rest of my family arrived. My aunt from DC, and my brother and his fiance showed up and took my father out to dinner. Toireasa slept in my mother's lap for the rest of the evening...

I brought her upstairs around 11 pm and she decided that she wanted to get herself changed and that I was to leave the room -- and the floor for that matter. So I did. When I returned she had her sweater off, her dress off and was sleeping peacefully in her nightshirt quite comfortable.

And that is how she is right now. My mom and I took turns reading yesterday's and todays notes to her and she laughed at many of them. Thank you!

Whatever time we have left we are enjoying every minute...

The magic continues...

God Bless You and Your Families...

Julia

Tuesday, April 09, 2002 at 06:29 PM (CDT)

Well, the sun came out for a little bit today and warmed us all up and the rains in the afternoon were very soothing and all the time the princess slept.

On Sunday evening Toireasa woke with a pain in her left arm that rapidly grew to numbness and loss of motion. We started her on an anti-inflammatory drug to help reduce the swelling in the brain that we believe is the cause of the numbness.

As her pain level has increased we have also increased the level of her dilaudid. She is currently at 7 milligrams an hour and is sleeping peacefully.

We did read her all the posts on her site yesterday evening and they all brought a smile to her face. She asked us questions about certain posts, so we knew that she was listening.

It's very peaceful right now here. Toireasa is in her stroller peacefully sleeping right next to me as I write this to you.

I will keep you up to date as I can, and please know that all of you are in our hearts and prayers...

God Bless You All,

Julia

Saturday, April 06, 2002 at 04:53 PM (CST)

Happy Saturday Everyone!

It's freezing here in Philadelphia! So let me bring you up to date on what's been going on since last I wrote.

Thursday Toireasa had a bad day. She was vomiting for most of it and we had to keep giving her doses of her pain medication to keep her relaxed. It finally stopped and she went to sleep.

Friday we had relatives from Florida arrive and we went to the Franklin Institute where Toireasa got to ride a Steam Engine Locomotive! Yes it actually runs inside the Institute -- granted only for a few feet or so but it was fun! She came home exhausted and in pain. She went to sleep for a couple of hours and then woke up for a pizza party that we had here at the house with the whole family.

She was only awake for a little bit of it because the pain is getting real bad now and her way of dealing with the pain is going to sleep. And that is the way it has been for most of today. She is rarely awake and all I'm doing is trying to chase the pain level to keep it at zero, she is currently at 2 mg of Dilaudid per hour and that's after upping in twice today!

Currently she is sleeping peacefully with her Baby Jane in her arms and Mr. Mistoffelees curled up between her legs. Her breathing is labored and her heart rate is irregular -- she skips beats every now and then, and will occassionaly not take a breath for a few seconds.

We don't know what will happen next or when, but know that we read her everything you post on this page and they do bring a smile to her face.

Last night, we read a very special book -- "Painting Sunsets With Angels." It is a beautiful book about a little boy named David who dies from his illness and goes to paint sunsets with the angels and is sister Julia is left to be consoled by her parents.

At the end of the book Toireasa asked me

"That's a sad story mommy. Are you talking about David or me?"

I responded... "Well we're talking about David right now, would you like to talk about you?"

Toireasa said...

"No mommy. I know you're really talking about me and that's ok, because I've already talked to my angels and we are going to be ok... I won't have cancer anymore and I'll be able to run and play again."

She then asked me to read another book that we had gotten for my mother last mother's day. It's called "Something to Remember Me By". It's the story of a granddaughter and grandmother growing up. At the end of the story after the grandmother has passed on the granddaughter is left looking in the mirror and sees what her grandmother has really left her -- her smile.

Toireasa then gave me a big hug and kiss and said "I Love You Mommy."

With that the princess turned and went off to sleep with a smile on her face.

God Bless You All!

I'll Be In Touch.

Love,

Julia

Wednesday, April 03, 2002 at 10:21 PM (CST)

Ok, I haven't updated this since Sunday because WE HAVE BEEN VERY BUSY!

On Monday, Toireasa, my sister Sheila and I went to the Academy of Natural Sciences here in Philadelphia. About a month ago, Toireasa "adopted" (sponsored) an African Grey Parrot named Cassie. Toireasa is taking care of the medicines and food for the parrot for a year. So Toireasa and Cassie spent about an hour together, talking about a whole mess of stuff!

Toireasa then took us up to the "Dinosaur Dig" that they have at the Academy where children can "dig" for fossils! It was really cool! We then went to the undersea exhibit that they have there and then, of course, went shopping!

We spent about 2 hours at the Academy then went down the block to the Please Touch Museum where Toireasa went through all sorts of hands on exhibits that they have there! Including being ON TV! It was a blast!

She then came home -- after 4 hours out and about -- and passed out! So did I!

On Tuesday, Toireasa woke up early! 6 AM! Unheard of for this child! Then went to sleep around 11 am. She slept for almost three hours when I realized that she was in pain and that was why she was sleeping so we upped the dose of the dilaudid again. An hour after upping the dose the child was up and rearing to go! We went to the Philadelphia ZOO! It was a riot!

Today, Toireasa had a lot of visitors. One of her fabulous doctors from CHOP -- DR ANN -- and Nurse Caroline -- as well as our home care nurse came over and gave us the latest assesment.

Toireasa's tumors have indeed doubled in size. The one on the right side of her head that was 1cm by 1cm last week is now a little over 3 cm by 3cm. So if that was has doubled then so have all the others. Toireasa is brusing very easily -- just by touching her -- so we know that her platelet and blood level is very low.

What can we expect? There are several tumors on the inside of the skull that can cause tremenduous bleeding -- this would be instantaneous and could happen at any time. This could drag out for several weeks as the tumors rapidly take over her body. So all we can do for right now is keep the pain level at ZERO which is very difficult. We are upping her doses every 24 hours to maintain a level where she can function.

So after upping the dose this morning, Toireasa, Sheila and I took her dalmation Moira for a walk! It was 78 degrees (F) outside and absolutely beautiful! She sat outside in the sun for about an hour and a half and then came inside because our priest came for a visit. Fr. O'Toole from the Shrine to St. John Neumann came over to give her the blessing of the sick. He spent almost 2 hours with her.

She then took a long nap and got up rearing to go again... this time to FADO -- an Irish pub here in Phila -- where she had cheddar cheese dip and brown bread loaded with butter! We were joined by our whole family --minus Ellen and Madeline who are back in Chicago -- and our dear friend Theresa from the nuclear medicine division of CHOP and her husband. Toireasa held court! Everyone at Fado's was absolutely wonderful and Toireasa had a grand time.

Currently the princess is upstairs reading C.S. Lewis "The Lion The Witch and The Wardrobe" to Sheila and wearing the cutest pjs! MONKEYS! And Monkey Slippers! She's having a blast!

We are enjoying EVERY SINGLE DAY to it's fullest! And every night, before we go to sleep, we go to this wonderful site and check out all her latest messages! I have to say YOU GUYS ARE WONDERFUL! She loves to hear every one you leave -- they really mean a lot to her!

Thank you again for all of your support! And I'll be in touch again soon.

My love to you and your families
(((HUGS)))

God Bless,

Julia

Sunday, March 31, 2002 at 10:17 PM (CST)

HAPPY EASTER!

Rain could not keep this kid from going to an Easter Party today! Pumped up on dilaudid, Toireasa joined the rest of the clan (actually soon to be inlaws), for a wonderful Sunday afternoon -- watching Cinderella II and Beauty and the Beast -- surrounded by our loving family...

The other news on her is what is expected... the tumors have dramatically increased. She is wearing an eyepatch occassionally to block out the left eye so she can see clearly. And, I have upped the dose of her dilaudid to hopefully maintain her at a pain free level.

What can we expect?...

This disease is progressing rapidly. Although she is upbeat some of the time, most is spent in pain and asleep. It will only continue to get worse. Within the next few days we are told to expect that she will no longer be able to do things for herself so we are enjoying each and every minute we have!

I have asked her how she is doing and how she is feeling but she doesn't want to talk about it much to me, although she does talk to my mother. She told my mom that she couldn't tell me because it would upset me too much and she doesn't want to to that to me. Even now she is still taking care of me.

Our doctors are in touch daily with us and our nurses are only a call away. Everyone is being very helpful and wonderful.

Continue to pray for a peaceful ending to this. It has been an amazing journey these past 5 years with her and I thank GOD for each and every minute he gave me and continues to give me with her.

God Bless You and Your Families This Easter.

Much Love,

Julia

Tuesday, March 26, 2002 at 06:38 PM (CST)

This is one of the entries that I was hoping I would not have to make for a very long time...

The doctors at CHOP have given Toireasa 1 to 2 weeks to live. The cancer has progressed at such a rate that her skull is now infested, for lack of a better word, on the inside as well as the outside. She will lose sight in her left eye within a few days and the tumors throughout the rest of her body are rapidly growing.

We -- my family, Toireasa and I -- have discussed this and we feel it is Toireasa's best interest -- NOT OURS -- to keep her at home without anymore intervention.

She is currently in the hospital getting a level set for a dilaudid (synthetic morphine) drip to go home on. We have set up with our home care for nurses to come and check on her daily.

I don't know if we have 2 weeks, 2 days or 2 months. But I wanted to relay to you her condition.

THANK YOU! for all of your support, prayers, gifts and most of all for your LOVE - Toireasa and I could not have made it this far without it!

I will try to keep you updated on her progress.

Pray that God takes her peacefully.

God Bless You and Your Families.

Julia

Saturday, March 23, 2002 at 12:44 AM (CST)

Sorry it's been a while!!! Things have been a little hectic around here.

Toireasa came down with a severe strep infection in her broviac line on St. Patrick's day. We ended up at the CHOP emergency department at 9 pm on Sunday night with her heart rate was 190 beats per minute and her blood pressure was 74 over 27. They told me that if I hadn't brought her in she would never have woken up!

We were sent up to the PICU unit where they did all the blood tests, hooked her up to some blood pressure medicine and started running some very high powered antibiotics into her.

We found out on Tuesday that it was Strep. Where it came from... who knows... they're very suprised that she was so sick from just strep -- we all thought it was something worse.

We spent the week up on the 6th floor of CHOP in the ICU and everyone up there was absolutely wonderful...

When we got up there, they had to put in an arterial line in her arm to check her blood pressure constantly. Unfortunately we had to get it in quickly so we were unable to numb her arm all the way. This child of mine kept her arm still the entire time they stuck her with this huge needle and sewed it into her arm. Her strength is unbelievable!

We were released to 3 East (the oncology floor) on Thursday evening and then at 11 am on Friday morning we were sent home!

We had numerous tests done this week and the outlook is not good. There are significant tumors in her abdomen, legs and now we are awaiting the final reading of the CT to determine if the swelling of the left eye is due to a tumor.

So, what does this mean. The original plan to start her on the fenretinide has been put on hold. If the final results tell us what we believe then putting her on fen would be like "spitting in the wind" (quote unquote from the docs), so we will have to look at other options to see if she is eligible for anything at all.

Dr. Maris and his team are fabulous and they are not giving up.

NEITHER ARE WE!

Keep praying and hoping!

We love you all!

God Bless!

Julia

Sunday, March 10, 2002 at 11:42 AM (CST)

We Have Had AN Absolutely Wonderful Weekend!

Toireasa hosted a Scooby Doo Party on Saturday -- with an icecream cake, balloons, various Scooby Doo games, and a Scooby Doo Pinata! I made sure that we did the pinata outside so the baseball bat wouldn't hurt the tv or the computer.

My wonderful brother held it on the end of a broom stick! It was a riot! I packed it with so much candy that no matter how many times the kids hit it they couldn't get it open... I finally took the bat and broke it open!! We had soooo much fun.

Following the breaking open of the pinata we piled all the kids into the cars and went to the Philadelphia Zoo. Toireasa thoroughly enjoyed her day!

Today we are trying to decide what to do -- maybe we'll hit the museums... But for now we're just having fun lounging around the house.

Now for the update from the hospital...

Toireasa's counts are not coming back like they had hoped. We will know in another week to two weeks if the stem cells are working. The only way that the stem cells would not be able to do there job is if there are too many Neuroblastoma cells in the bone marrow.

We will have another MIBG scan - not the infusion - on the 20th to see if there is any activity in her. We are pretty sure that we will see something abnormal. Her left leg continues to hurt her and the limp gets more pronounced as the day goes on.

BUT, the princess is in wonderful spirits! Her doctor told us that we have to hold out on hope for these next two weeks. So what did Toireasa do when she got home from the hospital... She hopped on HOPE!

Keep leaving those messages....

Lots of love from Toireasa and Me!

God Bless you and your families...

Julia

Tuesday, March 05, 2002 at 10:43 PM (CST)

Clinic Day!

Well the princess was absolutely correct yesterday when she saw blood after giving herself her daily shot... "I Need Platelets"

And Boy Did She!

This was the lowest yet... 6! She was 54 on Friday! I hope these stem cells kick in soon!

She is in a lot of pain now from her left leg again! We think we can feel a lump on the side. We will see Dr. Maris on Friday and hopefully he can shed some light on this for us.

Right now, Toireasa is ineligible for any additional therapies because her bone marrow is not producing blood or platelets. If (when?) the stem cells to activate the bone marrow, and she starts producing her OWN blood and platelets, then we can talk about other options.

If this is a tumor in the left leg, I honestly don't know what we will do.

For right now though, we are surfing the web looking for flower girl dresses as Toireasa is the flower girl in my brother's wedding in September.

She is in great spirits, taking care of her cousin Madeline -- she even changed her "stinky" diaper this evening (lol) -- and talking about her "boyfriend" LEO from Washington, DC. She is carrying around a wonderful photo of him and his sister Molly. She has such hope that she will one day grow up and get married.

She is still riding Hope, and so am I.

God bless, and thank you...

Julia

Sunday, March 03, 2002 at 08:30 PM (CST)

Well, What A DAY!

Sorry that we haven't updated since the stem cells, but we couldn't sit in one place for too long until the smell dissapated! IT'S FINALLY GONE! So stinky pants is no more...

But...! Another "stinky pants" has entered the household... MADELINE GRACE (Toireasa's cousin, you've seen her posts on the guestbook... they've been living in Brazil!), Is Here For 3 Whole Weeks! And the princess is thoroughly excited! She has spent the whole day taking care of this cute little 10 month old!

I know that we will have some beautiful pictures to add to the website shortly!

Today marks another first for the princess -- SHE GAVE HERSELF HER OWN SHOT! I've told you about this before... it's a growth factor called GM-CSF that stimulates white blood cells... well through the magic of EMLA (a lidocaine cream), the Princess is no longer afraid of the daily shot, and has now decided to give it to herself!

Toireasa has just helped her Aunt Ellen my lovely sister) give Madeline her evening bath. Toireasa told Ellen "don't you worry about anything, I'll take care of it" and kicked Ellen out of the bathroom and cleaned up the mess that they had created!

Yet again, the princess is running the household!

She is still up and walking and running around the house. At the end of the day though the legs are very tired and the pain begins to return.

We will know more in about 4 to 5 weeks when we have the next MIBG test to show active cells. We are all prepared to see a lot of activity, but hopefully her stem cells that we just gave her will have taken and activated her bone marrow, and she will be eligible for another experimental therapy.

Ok, guys, I'll update again soon. We'll be back in clinic for platelets on Tuesday.

Thank You For All Your Prayers!
Know That Everyone Of You Are In Ours!

God Bless,

Julia

Wednesday, February 27, 2002 at 09:35 AM (CST)

Well the Princess Has Received Her Stem Cells!

And the whole house smells!!!!!!!!!

She is in wonderful spirits! She was running around the floor at the clinic yesterday, driving one of those plastic cars around, running over nurses and doctors! She was definitely in control! My mother was exhausted, because, yet again, I had to work!

I called the hospital yesterday and talked to the nurse to find out where my daughter was and I was reprimanded by the nurses for leaving my daughter with my mother! They all said that I "owed her big time" and that my mom was "going to cash in" when I got home!

I was sooooo excited to hear how great Toireasa was doing after receiving her stemcells.

So formaldahyde smells aside, she is doing great!

Now it is a wait and see situation. She is starting on a new growth factor called GM-CSF that is supposed to help cell growth. We will know if the stem cells have taken in about 6 weeks.

Keep Your Fingers Crossed!

Well, the princess is beginning to wake up and I off of work, so there's going to be a lot to do today!

We'll keep you informed and in our prayers!

God Bless,

Julia

Monday, February 25, 2002 at 10:49 AM (CST)

Ok, do you think that I can get the princess to sit down for 5 minutes and update this site herself -- HECK NO!

Since the doctors on Friday told her it was ok to get up and walk around, she has been non-stop! She's been having stage shows throughout the house! My mother is absolutely exhausted! I think if she has to be Munkustrap or Skimbleshanks one more time she's going to scream! (if she could, but she's lost her voice!!!)

So, I've been working and been able to miss most of the excitment on Saturday. She was extremely busy with my brother. He says that she is too much! If he thinks that she is too much I can't wait to see him with his kids -- and he wants 3 or 4!

Ok on to Sunday!

We went to church at St. John Neumann's Shrine here in Philadelphia. When we went 3 weeks ago, Toireasa couldn't keep her head up and was lying in her stroller. The priest that day came over and said a little prayer in her ear. The same priest was the one celebrating mass today! He was so excited that he cried! He couldn't believe that she was the same kid! She was walking all over the church!

We then went to see the IMAX version of Beauty and the Beast! The new scenes in it are lovely! Toireasa especially liked the cat! (he was the pillow). She laughed and sang the entire way through the movie.

She fell asleep -- more like collapsed -- in the car on the way home and didn't wake up for about 2 hours. When Stella, my brothers finance, arrived in the house we got on line to check out flower girl dresses, because Toireasa is the flower girl in Stella & Michael's wedding here in September!

The rest of the evening was spent with myself being Ariel and Toireasa being Belle. Then she told me that Ariel had left and that I was now Lumiere and my mother was Mrs. Potts. And if we didn't act the parts, including accents!, we would be in BIG TROUBLE!

It was loads of fun!

Toireasa gets her stem cells back tomorrow and I'll fill you in again then.

God Bless!

Julia

Friday February 22, 2002 10:29 AM CST

I LOVE being able to update this as things happen!

So here's the scoop...

First, she did not need any platlets or blood today, so we came HOME!

Second, the MIBG/Radioactive Iodine therapy we did last week WORKED! There are no tumors that we can feel anywhere so Dr. Maris told her to go ahead and WALK whenever she feels like it!

Third, we will be giving her stem cells back to her on Tuesday and starting her on a growth factor called GM-CSF that will help her bone marrow to GROW! Dr. Maris believes that this WILL WORK and she will be eligible for other experimental treatments in about 6 weeks.

Now, what does this mean? It means that we are NOT GIVING UP HOPE! There is still a chance, now it looks like a very good one, that we will be able to control the growth of the Neuroblastoma cells and keep this nasty disease at bay for hopefully a while longer!

Faith Hope Trust & Pixie Dust for all of you!

God Bless,

Julia

P.S. Check out the new photos... the first - Toireasa Riding HOPE - was taken by a wonderful photographer in NY named John Fei, the second two were taken by my beautiful sister, Ellen Barry-Oberle.

Thursday February 21, 2002 10:35 PM CST

Well Hello Everyone!

J.Crew has sent me what has to be the most important photo I have in my collection, and I want to share it with you...

Toireasa riding her horse called HOPE!

I HOPE you enjoy it as much as I do.

We meet with Dr. Maris in the morning and will have more details on what we are doing next.

But... I have some HOPE!

The tumors that were on the side of her head -- I can NO LONGER feel!

We went out shopping today and she got a new id tag for her dog Moira, and a whole new outfit for her fishtank -- with a mermaid and castle -- of course. Oh, I almost forgot food and accessories for her cockatiel Seamus. She had a blast!

Take care and I'll talk to you soon!

Julia

Monday February 18, 2002 11:40 PM CST

Hi Guys! Can you believe it... 2 journal updates in one day -- go to history and see the previous one for the updates on the condition.

Now for the fun news...

Toireasa had a blast when she came home! My brother Michael came over and they played on this wonderful computer all afternoon! She was soooooooooooo excited to get to read all your messages THE VERY DAY that you left them! She was absolutely thrilled!

She and my brother watched a Scooby-Doo DVD and played the computer games attached to it and surfed the web!

After my brother left, she and my mom painted the cookies that Toireasa and I had made earlier last week. She had made Santas, Nutcrackers, Snowmen and most importantly STARS. So the previous three are multicolored but the STARS are Bright Yellow.

She wore both my brother and my mom out! Thank goodness I was at work! At least I came home with some energy!

Toireasa is fast asleep! Which is a first! The past two nights she didn't go to sleep until 4 am!

So, like I stated on the previous entry, we'll know more (hopefully) on Friday, and I will fill you in.

Maybe tomorrow I can get her to leave you guys a message here! Check Back And See :)

God Bless!

Julia

Monday February 18, 2002 10:37 PM CST

Hello Everyone!

TOIREASA IS HOME!

At least for a few days:)

So here's the scoop on the poop...

NO ONE KNOWS! They all have ideas, none of which are good. But because the x-ray was done of her belly after she got 255 units of platelets, everything that was bleeding had stopped.

So, could she have ulcers along the intestines and colon, you bet! Most likely she has moderate to severe breakdown of the mucous membranes throughout her intestinal tract.

What can we do about it... unfortunately, nothing dramatic. All we can do is continue to watch her platelet count and continue to give her red blood cells and platelets to prevent any hemmoraging.

So, the princess is at home and feeling ok. Her appetite is bird like and all we have been able to get into her is ice cream and rainbow sherbet. At least she has good taste!

We go back to clinic on Friday and we'll see what the Big Guy -- Dr. John Maris -- has to say.

We would like to ask of you a favor...

One of the other managers at the JCrew store at King of Prussia (where I work) is in need of a whole lot of jellicle prayers! His father has been diagnosed with cancer that is rapidly taking over his body and there is no real hope. Please add him to your list. I don't know his first name, but his son is Dave Gilvary. Please pray for his family in their time of need.

Thank you all and God Bless.

Julia

Sunday February 17, 2002 6:59 PM CST

Hello Everyone!

Ok, it's been an interesting couple of days. On Friday, Toireasa and I went to see Peter Pan Return To Neverland! And what fun we had! The theme of the story is that you HAVE TO BELIEVE! And in order to FLY you need FAITH, TRUST and of course PIXIE DUST! Toireasa being the intelligent one that she is said that they forgot the most important one... HOPE. Out of the mouth of babes!

So on to Saturday. Toireasa bled from her rectum at 1:30 on Saturday afternoon, and we, of course, went to the hospital. Her platelet level was 27 -- not too bad for her -- but seeing as how normal people have levels 150-200, they gave her some. The cause of the bleeding is still undetermined. She has had an abdominal x-ray, and they are testing her urine and stools consistently. There is still some blood showing positive.

So now for the cause... they don't know as of yet. Instead of sending us home and seeing if anything happens overnight, we are here for another evening and will meet with her primary doctor -- Dr. John Maris -- tomorrow morning and see what he says.

With any luck we'll be home tomorrow.

I'll keep you posted.

I hope you like the new photos -- all thanks to the many CATS fans from around the world! We Love You!

God Bless and remember what Toireasa said... All you need is Faith, Hope, Trust and Pixie Dust!

Talk to you soon...

Julia

Friday February 15, 2002 5:06 PM CST

Hello Everyone...

First of all TOIREASA IS HOME! It was a wonderful Valentine's Day! Her radioactive level was down to 4.3 so they said we could leave! YEAH! Talk about a Valentine's Day Present!

Now, how am I able to update you guys right now? It is due to the wonderful people of Musicals.Net Cats Forum! I LOVE YOU ALL!

Toireasa and I have been playing Barbie Detective all day and this is the first that I have had it to myself for a few minutes, so I thought I should say hello!

Toireasa had me read through all of your notes, and she was smiling and laughing the whole way!

We won't know anything for a few more weeks and the plan is to give her back her stem cells here in 2 weeks.

I promise to keep you informed.

I LOVE YOU!

God Bless,

Julia

Tuesday February 12, 2002 10:43 PM CST

Hello everyone!!!

Ok, so it's been forever since last I updated this, and please accept my most humble apology... so here's what's been going on...

The last MIBG treatment went fairly well. The tumors were reduced significantly in size and amount and Toireasa and I went to NY to visit the J.Crew corporate offices and they were wonderful... they gave Toireasa a handmade wooden rocking horse that looks like it came off a carousel! She has named the horse HOPE because hope is what is going to carry her through this new year. They also came up with tickets to LION KING! Don't Ask How! And it was fabulous... She got to ride the ferris wheel at Toys R Us at Times Square and then had the best gift of all... She got to meet the one, the only CAMERON MACINTOSH! For those of you who are new to this site... he's "The Producer" -- CATS, Phantom, Les Mis, just to name a few.

Christmas was especially special and she had a fabulous time!

Her 5th Birthday was THE BEST! J.Crew came through again.. This time it was the District Managers from across the country, and the store managers from the Phila Area who provided her with the most amazing Birthday Present -- A trip to DISNEY WORLD! Many thanks to all involved...

We returned from Florida and visited the orthopedist who gave clearance for Toireasa to finally walk again. This unfortunately lasted only a week.

Toireasa has relapsed again. The tumors are in her skull, back in her abdomen, in her legs -- she can no longer walk -- and unfortunately her bone marrow is not producing blood or platelets.

So here's what we are going to do...

We are undergoing (right now!) another infusion of MIBG and Iodine radiation. We hope that we will have similar results that we had the last time in that the tumors reduce in size and the pain goes away. The first week of March we will give her back her stem cells that we harvested Jan 7th last year. Then we will wait and see.

If her bone marrow decides to crank back up and produce blood cells and platelets then we will look at other options out there -- experimental treatments that do not include chemotherapy or that make her sick (I will explain in a minute). If the bone marrow does not kick in then we will begin to prepare for the end, keeping her at home and the pain levels down.

Now for the explanation...

Toireasa informed the doctors last week...

"I do not want any more chemo. I do not want to be sick anymore. I do not want any more surgeries. When I go, I want to go at home with my mommy, my grandmommy, my grandpa, my dog, my bird, and my cousin Madeline."

So there you have it. The princess has spoken.

God Bless all of you for all your prayers and good wishes. Miracles can happen, you never know. But I do know that I will honor my daughter's wishes. She told me last week that a friend of hers who died last September of cancer...

"You know mommy, Jack is in heaven with God now and he doesn't have cancer anymore. That's pretty cool."

Yes Toireasa, that is.

God Bless You All.

Julia

Friday, December 14, 2001 at 03:44 AM (CST)

Well it has been interesting here to say the least. And Toireasa's spirits are still up!

We are having puppet shows with blown up latex gloves and shoe covers. We're pretending that the room is an ice skating rink and mommy is learing how to ice skate -- I still can't. And we're watching as many Christmas shows as possible!

Hopefully we will be out of here on Saturday. It all depends on how radioactive Toireasa is.

The first day was fine. But Wednesday night was torture. The pain associated with this is enormous! She has shooting pain in her ears and in her abdomen. The docs believe that it is caused by the radiation attacking the tumor and the cancer cell sites. We will have a good idea if this has worked in 1 to 2 weeks, but we won't know any definite results until 6 weeks from this.

We're having as much fun as one can have when you are stuck in a bed. And I'm reading her all your posts! Thank You!

We're having a scan today to see where the MIBG was taken up (where it is sittingin her body). I'll have more info for you guys tomorrow.

Thanks Again!

Julia

Tuesday, December 11, 2001 at 10:06 PM (CST)

Unfortunately we have some very bad news... There is no chance of a cure for Toireasa. The Neuroblastoma has taken over both legs, her pelvis, her abdomen, her liver and her lungs. She is on pain medication every 6 hours and can no longer walk.

Is this the end? We don't know. We are trying just the MIBG part of the treatment I mentioned in November. She and I have decided that there will be no additional chemo treatments for her ever. The risk of loosing her during one of the infections that follow a chemo treatment is too great! And the princess doesn't want to ever loose her hair again or be sick again. I can't agree more.

So we are in the hospital now and on Wednesday Dec. 12th we begin the clinical trial using I131-MIBG. Within two weeks we should be able to tell if the size of the tumors have reduced. If there has been an increase in the size of the tumors then we will begin other preparations. If they have reduced then we know that she's been given a little more time. How much we will don't know.

We will be in isolation for 5 days. Upon release we are going to NYC with my company J.Crew and are going to see THE LION KING on Broadway, and go to Toys R Us and ride the Ferris Wheel.

Does Toireasa know what is happening... the answer is yes. The night before the CAT scan that showed the tumors everywhere, she had a dream where she said she felt like she was floating and when she looked down she saw her body on the ground. But she said she wasn't scared.

She told me tonight that she's a little scared but it's going to be ok, because she's going to take care of me.

Keep her in your prayers and know that she loves you all.

We don't know how much time we have left, but we're going to enjoy every minute of it!

Love,

Julia

Friday, November 09, 2001 at 12:49 PM (CST)

Hello all...

First I want to thank all of you for the kind messages to Toireasa. They definitely keep her spirits up.

As was stated in the last entry, Toireasa has relapsed. We are looking at a number of options and the two at the top of the list are -- an experimental study with a nuclear medicine called MIBG131 where she would be locked in bed for 5 days under lead sheilds followed by a stem cell rescue -- or the second one would be to enjoy what time we do have with her and make her comfortable to the end...

There are numerous side effects to the first one -- she could loose all her hearing, kidney and heart failure, liver failure, and she may never walk again.

So what to do.... that is the question. I want to keep fighting because that is what she wants, but right now it's hard to put her through all that. She understands what is going on. She told me last week ... "Mommy, you know, I'm fighting for my life."

If we do decide to go on with the study it will begin around the holidays.

I will keep you informed.

Please pray for us...

God Bless Each and Every one of you!

Julia

Thursday, October 25, 2001 at 11:16 AM (CDT)

Hello Everyone,

Unfortunately, I have some disheartening news. Toireasa has relapsed. We begin radiation therapy tomorrow and we're looking at other forms of therapy. We'll update you all shortly. Please keep up your prayers.

God Bless,

Aunt Sheila typing for Julia

Thursday, October 11, 2001 at 10:14 PM (CDT)

Well Hello Everyone...

Yes, I continue to have good news on Toireasa. Tomorrow is the last day of her accutane treatment ENDING the protocol. DAY 1 of being NED will be Saturday!

She is very excited about everything. We have been to the Zoo this summer and the museums here in Phila -- she's having a blast. She is growing and playing and being a typical 4 year old!

Thank you for helping us get this far and your continued prayers and good wishes will keep us going on each day for a very long time.

Toireasa is looking forward to starting
school soon and continues to tell me that she is going to grow up and when she gets older she will get married and have lots of babies.

YOU BET SHE WILL!

Thanks Again, and God Bless You All.

Julia

Thursday, September 20, 2001 at 09:41 PM (CDT)

Hello Everyone!!! Wow What A Week!

Toireasa and our family were back in Washington, D.C. last week and watched in horror what happened in New York and right down the road at the Pentagon.

Toireasa had some wonderful insights...

Her best friend continues to be Rawan a beautiful little girl from Kuwait who is currently back there. Rawan and her family are Muslim. Toireasa looked at me when all of this was being discussed on the television and asked, quite simply... "Mommy, didn't Rawan's mommy tell me that Islam meant 'Peace'?" I responded that yes, and she said... "then why don't those people understand?"

She is deeply troubled about all of this, but firmly believes that God will take care of everyone. She told me that all those people who died are with God right now and he is taking care of them.

Now, on a happier note... Toireasa continues to grow and get stronger every day. Her bone marrow continues to be clear of all cancer cells and for the first time ever her bone marrow showed HEALTHY NEW CELL GROWTH! Yahoo!

We miss talking to all of you terribly and in many ways it's very lonely here in Philadelphia. She would love to get letters, cards, etc. from you guys...

our new address:

814 Pennock Street
Philadelphia, PA 19130.

I am working on getting a computer for our house and should be up and running shortly so that she can write to all of you as well.

Please know that she thinks of all of you often and holds you deeply near her heart.

I love you all.

God Bless.

Julia

Sunday, July 22, 2001 at 12:27 AM (CDT)

Hello everyone!!!

We are currently in Morton, Illinois for the christining of my niece Madeline. Toireasa is doing very well. She is running and playing with all th kids.

Her bone marrow came back normal -- actually they saw new cell activity -- and the CAT scan showed normal kidneys --- the best kidneys they had ever seen....

It's been really hard to try to keep in touch with all of you, but know that you are always in my heart....

LOL

Jules

Monday, May 07, 2001 at 11:10 AM (CDT)

Hello Everyone!

Sorry for the delay in journals, but it's been a pretty busy week.

Last Thursday morning, Toireasa had a bone marrow aspiration to confirm she was still cancer-free. The results came back on Friday morning, and ... she is COMPLETELY CLEAR!! So, the next step is vitamin A therapy for the next six months.

However, Toireasa spiked a 104-degree fever on Thursday night and began cycling high fevers three times an hour. Mairona and Julia brought Toireasa to the Emergency Room and she was admitted to the floor. She was placed on antibiotics, but the doctors suspected the source of the infection was the MEDCOMP in her chest and decided to remove it. The removal of the MEDCOMP only left her veins for I.V. medications and fluids. The lines were initially placed in the left arm, but the veins were too weak and immediately blew. So, they moved the lines to the right arm.

On Sunday night, the doctors received a positive staph culture from her blood. That meant Toireasa had to be placed back on Vancomycin, which has to be administered over 3 hours every six hours because she is so sensitive to the medication.

She will stay on Vancomycin through today with the IV in her right arm. Tomorrow, she will be switched to Bactrim, pill-form, and...SHE'S GOING HOME!!! (I just found this out, so I'm a little excited!!)

Other than this little hurdle, the princess is doing quite well! She's started riding her tricycle for 2 block increments, completing the "Wiggle Group" exercise videos, and even climbing stairs on her own! She's in a great mood, and laughing, singing, and dancing around...just wonderful.

Funny story...
When the doctors told Toireasa they wanted to move the IV from her left to her right arm, she demanded that they give her something to make her sleepy so she wouldn't have to watch it. The doctor gave her some medication which he thought would sedate her. Instead, Toireasa was completely wired!

She was listening to her Scooby Dooby-Doo tape and singing along, snapping her fingers, but didn't mind the IV being moved. Anyway, she continued to be alert and really energetic, singing, playing, walking the floor, and wearing out Mairona until 3 AM!!! She was the only child awake in the hospital and kept on saying to Mairona, "What's wrong? C'mon! Keep up!!"

Also, CM sent Toireasa a copy of the London cast of "Oklahoma!," which she plays over and over and sings all the songs all day and all night - even correcting her mom on the words! So, you can tell, she's in a great mood! :)

Thank you all for your prayers and support. It means so much to her to read all of your comments, and know you're all around, really pulling for her!

Lots of love,
Aunt Sheila

Saturday, April 21, 2001 at 11:52 PM (CDT)

RADIATION IS OVER!!!

She breezed through it and came out with flying colors!

Toireasa's appetite is up and she's eating me out of house and home! She looks fabulous and her hair is growing back very quickly.

We still haven't found a place to live here in Philly, but we're still trying! Never give up -- that's what we always say!!!

I cant write too much more, because I've got to run! We're baking a cake!

LOTS OF LOVE to all of you!
Keep in touch!

Love ya,

Julia

Sunday, April 08, 2001 at 01:04 AM (CDT)

Hello Everyone!

Toireasa is doing OK, she has had two days of radiation and has 10 more to go... Monday thru Friday for the next two weeks.

She has just gotten over an intestinal virus and now all the same symptoms are back... lack of eating, vomiting and the D word!

But her spirits are up and her hair is growing back! She's sooooo excited! She was down here with me the other night reading all your messages! KEEP THEM COMING!

She is desparately looking for mail in her mail box... so... if any of you would like to drop her a postcard, or a quick note, the address here is...

Toireasa M. Barry
Ronald McDonald House
3921-3925 Chestnut Street
Philadephia, PA 19104

Talk to you guys soon!

All my love!

Julia

Thursday, March 22, 2001 at 11:46 PM (CST)

TOIREASA IS CANCER FREE!

Yes, ladies and gentlemen, the test results have returned and the answer is - NO ACTIVE CANCER CELLS! So we are on to the next step of radiation. BUT, we are only doing the primary site -- her left adrenal gland area -- and nothing else because her growth plates are extremely active!

SHE'S GROWN 2 CENTIMETERS in ONE MONTH!

WHOOPPEEEE!

Ok so now we've got the tough stuff. The radiation will last about 3 weeks and will start in 2. It will take two weeks to get everything prepared for it.

After that she begins her 6 month accuane therapy and then she's done. We have to just keep praying that it won't come back.

I know that she couldn't have made it this far without all of your prayers and good wishes. I owe her recovery and who she is today to each and everyone of you! We couldn't have made it without you!

This story isn't over, it's just beginning! She's got a new lease on life and we are going to share every minute with all of you!

God Bless You and Your Family!

And as my grandfather used to say...
May we all be here 12 months...

Julia

Saturday, March 10, 2001 at 07:34 PM (CST)

Hello Everyone!

First, you will notice that the guest book looks somewhat different. Due to the fact that many of you could no longer log on because this page was soooo big, I have deleted the guest book to preserve the journal for the new visitors... Don't worry though, I have printed out all the pages and they are in a book that Toireasa keeps with her at the hospital. I will do this purging once a month to keep this page up and running!

Now, on to Toireasa...

Toireasa has a staph infection in both of her lines. She is now on Vancomycin - nasty stuff - and will be on it until she gets three negative cultures... Keep your fingers crossed that it's soon!

Next week is the re-evaluation of the disease. All tests begin on Monday - SO PRAY REAL HARD!

Her spirits are up and - oh I almost forgot... SHE'S RUNNING! Yes, ladies and gentlemen, the little one has gotten full use of her legs back and she is running up and down the halls! Of course, not as fast as the other kids are, but she's trying to keep up and doing a darn good job.

Well, this is all for now...
Love You Lots!

God Bless!

Julia

Sunday, March 04, 2001 at 01:04 AM (CST)

Ok it's been a while, and I truly apologize but the server for the computer here at the Ronald McDonald House is consistently down and it's been a little difficult to even get my emails.... so here it goes....

Toireasa has been diagnosed with Fanconi's Syndrome caused by the chemo. Fanconi's is a form of kidney failure where the kidneys flush everything out of your system. So, Toireasa has to be given all the essential nutrients -- magnesium, potassium, phosporus, calcium -- three tims a day at very high doses just to survive. So she is ineligible for her stem cell transplant.

On Friday March 2, 2001 Toireasa finished her final round of chemotherapy! SHE'S DONE! At least with that part. She was able to be an outpatient for the final round and is still out and kicking! She's been running around the RMD house and eating up a storm! She Looks Great!!!!!

So the next step is the 6 month Accutane Therapy and Radiation. We are in the planning stages for this. She will have a full diagnostic work up in two weeks, providing she doesn't crash too hard and ends up in... knock on wood... so we are keeping our fingers crossed!

She is looking forward to meeting all the CATS fans this summer in NYC for the big fan celebration. She's already picked out her outfit and is totally excited that her hair is growing back so that everyone can see her copper hair!

She is doing great and her spirits are up. We have yet to begin the move so we are still living in two cities right now and it's a little much. But I know that we are in the right spot! She's a totally different kid from when we got here in November.

I will try to get to Kinko's and scan in the new photos -- but it will all depend on this "snow storm" that's coming later tonight.

Hopefully I'll be able to update again soon... thank you for all of your prayers. We really need them now that there is no stem cell rescue... Pray that this nasty disease doesn't come back.

All my love,

Julia

Wednesday, February 14, 2001 at 01:33 AM (CST)

Hello everyone...

Toireasa was readmitted to CHOP on Thursday evening February 9 with a fever and positive cultures in her line.

But the good news is that the bacteria in the line is gone -- because of quick acting on mom's part (pat on the back for me!) and there is NO PSEUDOMONAS in the urinary tract! Dr. Canning says that it's a bloody miracle!

Things have been a little hectic though, her electrolytes were all messed up and her system wasn't absorbing magnesium and potassium so it's been rough the past few days with p/o meds and bolis upon bolis of medications!

All in all she is in wonderful spirits. She is telling everyone that she is studying to be a ballerina so she can dance on broadway and that she is going there in the summer for the cats fan party because she is the Jellicle Princess and they can't have a party without her.

Toireasa though is NOT going to have her stem cell rescue. The doctors all agree that she is no longer a candidate for them. If we were to start the process, they all feel that the chemo would kill her. So, I'll take the 20% chance of no relapse and live every day to the fullest!

We are most likely not going back to DC and I am in the process of trying to close up shop down there and get the entire family, bird and dog up here and settled -- I'll keep you informed on that one.

I'm still printing out all of you messages and we read them every night together. She loves them! And to everyone at SPIRIT IN MOTION -- she says that as soon as she's out of the hospital she wants to come and see you!

God Bless You All!
You're in my prayers.

Much love,

Julia

Monday, February 05, 2001 at 08:10 PM (CST)

WE ARE OUT! Yes indeed, the Princess has returned to her domain at the RMD House. She was welcomed back with a round of applause as she entered the kitchen!

Everything is going well, she looks great and still has her crazy appetite! Yesterday she had sardines for breakfast!

She's currently out watching Fantasia 2000 and having a wonderful time with her friends -- she's finally realized that she has quite a few here and she looks forward to seeing them all!

We don't go back to the hospital until Friday for a meeting with Dr. Maris to discuss where we go from here. No one has decided anything on stem cells yet so we are still waiting... maybe we'll know something on Friday.

Everything is going well, and I'm starting to lean toward actually moving here to Philly! It certainly would make the follow-up visits easier!!! And, it would be nice to have a place to call home. I'll let you guys know as soon as I do.

Keep those prayers and good wishes coming! We love you!

God Bless,

Julia and Toireasa

Friday, February 02, 2001 at 09:39 PM (CST)

Sorry that it has taken so long to update this site, but things have been very hectic! So on with the update!

Toireasa had her tubes removed on Thursday and both the kidneys and the bladder look beautiful! She is currently undergoing another round of chemo and then we will make the judgement whether or not to go on to stem cell.

But, HER HEART IS BACK TO NORMAL! We got the results back from the latest echo/ekg and her heart is functioning in the normal range!

She is deeply concerned with everyone else on the floor and at the RMD house. We have lost two babies this week from complications with their heart and it has greatly affected Toireasa. But not in a bad way... She is wearing her cross and praying to God to take care of the little ones who are with Him now. She asks that you say a little prayer for them as well -- their names are Gwendolyn and Richy -- and both were under 6 months old.

She has her CD of Laurie Beechman, who played Grisabella on Broadway and lost her life to cancer, and is telling everyone that Laurie is with God and is watching over all kids with cancer to remind them to fight but remember to sing!

Toireasa is up and walking all over the hospital without any assistace from her walker or her baby stroller. "Little Miss Independent" won't even hold my hand!

With any luck we will be out on Sunday or Monday for at least a couple of days. I have returned to work. J Crew has transfered me here to Philly and it's wonderful to have some normalcy back.

I love you all,
God Bless,

Julia and Toireasa

Friday, January 26, 2001 at 10:55 PM (CST)

Well Hello Everyone!

It's been a very hectic week! And it hasn't gotten much better. Toireasa is fighting strong and through it all still has her sense of humor and her attitude!

We are having trouble keeping her electrolytes stable, between the CO2 level going through the roof and her the other ones bottoming out she's had a real tough week.

The stints and tubes are still in and won't come out until Monday at the earliest! But the child has gotten up and walked! Yes! I SAID WALKED! Of course she then collapses in pain, but the strength is there to succeed and she is going to do it!

I don't have much time to update you on everything but I will leave you with a cute anecdote...

The doctors had asked us to use Desitin on her to prevent the acid in her urine from causing a skin infection. I used it once and saw she had a reaction to it so I stopped it. I left that evening and returned to the Ronald McDonald House leaving my mother there with her.

At 1:30 in the morning I get a phone call from my mom -- I forgot to tell her we stopped it -- My mother had tried to put the desitin on Toireasa and she said, and I quote:

"Oh no you don't, we discontinued that! Call my mommy and confirm if you want!"

She is 4 but sometimes I really wonder!

Much love to you all,
God Bless,
Julia

Thursday, January 18, 2001 at 11:15 PM (CST)

My humblest apologies for not updating this website sooner... things have been a little hectic with the Princess turning 4 and the surgery we just had... more on that in a minute...

First, THANK YOU to everyone for your notes on Toireasa's birthday -- she loved them! She had to have her perepherial blood stem cells harvested on her birthday so the Princess had TWO parties and your notes made the goings on at the hospital much more pleasant!

As you all are well aware Toireasa has had severe heart problems since the septic infection in November. WE HAVE GOOD NEWS! The shortening fraction is up to 27.46% and is getting stronger every day! The STEM CELL RESCUES are back on! Cardiology is deeply impressed with the strength of this little girl and her determination to get well. Her heart looks thousands percent better than it did just a month ago. Your prayers are working!

Now the surgery...

Toireasa, as most of you are aware, has 4 kidneys and a balloon in her bladder. This has been a source of contention for me as I always felt that the infections in her system were due to the upper one on the right and the balloon in the bladder! BOY WAS I RIGHT! The urology team here at CHOP are fabulous -- here is what they did...

#1. they cut open the bladder and removed the ureteroceole (balloon) from inside the bladder and the urethra

#2. they detached the right two ureters and moved them over to the left side

#3. they reattached the urethra to the bladder and sealed it up moving the left two ureters to the right side

#4. they have two drainage tubes for each right ureter coming out of her near the belly button

#5. they have a super pubic catheter (the top of the bladder) to drain the urine as the urethra heals

#6. they have a foley catheter in the urethra to drain what ever is left that doesn't exit through the other 3

#7. they have a drainage tube for the bladder where the incision was made to drain any blood and puss that may accumulate!

So all total the Princess has 7 tubes (if you include the double lumen med-comp catheter) coming out of this little body!

BUT... the surgeons feel that this was a success and in 10-14 days from now she will be having the first of MAYBE two stem cell rescues.

We're still discussing it all, but if all goes well we should be home by summer!

I will update as soon as I know more. Keep your prayers coming -- THEY'RE WORKING!

I LOVE YOU ALL!

God Bless,

Julia

Sunday, December 31, 2000 at 12:10 PM (CST)

Well, HELLO EVERYONE! and Happy New Year! It has been quite a while since I have been able to talk to you... a quick thank you to my mom, brother, aunt, and dearest Melanie for helping me keep all of you updated! And many thanks to you for keeping in touch, sending cards, thoughts and prayers. You have made this holiday season truly magical.

Now, on to the update...

On Saturday, December 23 at 10 pm my mother, my sister Sheila and I brought Toireasa to Children's Hospital Emergency Department with a fever of 39.1 -- she was lying in the fetal position, complaining of pain in her tummy, and crying because she wanted to be back at the RMcD House for Christmas. The nursing staff and doctors in Emergency were absolutely wonderful! Not only did they immediately hook her up to fluids, take the necessary cultures, but they took away the pain and made her smile! One doctor in particular, went back to a bin of toys that they had set aside for kids, she went through it very carefully and came back with a Barbie doll for Tess. The look on Toireasa's face was priceless, you see it was Ballerina Barbie dressed in purple and blue and her leg warmers matched Toireasa's striped shirt exactly. She looked at the doll and said:

"Oh, my gosh! She is a ballerina just like Victoria"

Well that little comment opened the door for her to explain to a whole new venue all about CATS. She was even singing the songs -- Mistoffelees, the Jellical Ball, Skimbleshanks and even MACAVITY! Boy, have we come a long way!

We were admitted to the floor at 4 am Christmas Eve, much to her dismay, but as long as I had the CATS video with me and ALL her pictures, everything was cool!

She slept most of the day, so unfortunately she was up until 3 am Christmas Day, so Santa had a lot of work cut out for her! Needless to say it was a ton of fun! Santa had gotten Toireasa the Madeline Doll House and spent 3 hours putting it together in the waiting area on the Oncology Floor! Decorated with Christmas lights, a Christmas Tree and an Angel, the house was filled with presents from around the globe! There was even a chair filled with presents and an enormous bag filled with gifts from the hospital staff!

At 8:30 am the princess called out to go potty! Complaining that she was tired and didn't want to wake up, I informed her -- don't worry, just go potty and go right back to bed... no sooner then I had said that did she open her eyes and exclaim -- I'M AWAKE NOW! The smile was ear to ear and she was so excited that she almost jumped on to the floor!

The nursing staff was so excited about the house that even the nurses who were scheduled to leave at 7, stayed until she awoke so they could all see her face and wish her a Merry Christmas. One nurse surprised Toireasa when she walked in with a certain cat that Toireasa has been looking for -- SKIMBLESHANKS! So finally after many months of searching he has finally been added to the collection.

The culures were confirmed on Tuesday afternoon that Toireasa had indeed developed another Pseudomonas Infection in her urinary tract. The oncology team agreed with me that Urology needed to be brought in and we have to find out where this nasty bug is hiding so we can get rid of it.

We are doing another kidney function test on the 4th a Magnesium 3 Lasix Exam that will let us know how we are doing. The gut feeling from urology team is that the upper pole of the right kidney may need to come out, or at least the ureter needs to be taken out of where it is and placed in another part of the bladder, stopping the reflux and removing the ureterocoele that's causing it. We all agree that the pseudomonas needs to be stopped before Stem Cell.

Her heart has not changed -- the closure rate on the ventricals is only 24%, the critical line is 25%, so she is still in the danger zone. The cardiology team is still considering her for possible heart transplant after stem cells -- she's on the list.

So now it's Dec, 31 and the year has come to an end. What a year it has been. I never dreamt that a year could be full of so much pain and joy! Thank you, everyone, for all of your prayers, thoughts and cards throughout the year. To everyone at J. Crew -- thank you for all of your support -- to Carol, Nino, Linda -- I miss you guys! Many thanks to the Cast of CATS here and abroad for all you are doing for Toireasa. Much love to Cameron MacIntosh who makes the magic continue every day -- we couldn't have made it this far without him. And last but not least to Billy, Michelle, Julius, John Eric, Amanda, Keith, Lenny, Denise and Susan, Whitney, Moira, Caitlin, Terri and everyone at Spirit in Motion -- thank you for believing.

Finally, I wish each and everyone of you a blessed new year, that all of your dreams and desires for the new year will come to pass and as my papa used to say --

"May We All Be Here Together 12 Months"

God Bless and Happy New Year,

Julia

Friday, December 22, 2000 at 08:58 AM (CST)

Another update from MAIRONA (TOIREASA�s grandmother) courtesy of BRENDA (TOIREASA�s grandaunt)

Everyone knows how shy TOIREASA usually is in a large crowd or when introduced to strangers. Well folks,��the times they are a-changing��at Children�s Hospital of Philadelphia ( CHOP)! For those unfamiliar with CHOP, the renovated hospital has a huge seven story atrium with a stadium seating stairwell from the first to third floors and a one quarter atrium platform (concert floor) at the second story level. On Saturday (12/16), TOIREASA, hooked up to her chemos, (pole, tube et al), stood on a folding chair, took baton in hand, and conducted an eighty-piece concert band through two holiday medleys. A trained conductor, Mom JULIA, kept the concert at tempo. And I tried to watch through my �happy tears�.

When TOIREASA finished chemos on Sunday (12/17), she wanted to exit the oncology floor by the big swinging doors. As she stretched to reach the wall-mounted door activator, Dr. Grupt called from down the hall, �You better act fast TOIREASA, or I may change my mind and keep you here!� Laughing, TOIREASA shouted back, �I�m out of here!� And away she went to the Ronald McDonald House, her home away from home.

Just looking at her, It�s hard to believe TOIREASA is so ill. Mentally she is on top of everything; physically, she looks great! Actually, she is coping with overwhelming odds and she knows it. But she is not letting it slow her down. A volunteer at the house asked to borrow one of her vides to which TOIREASA responded, �How about we all watch it together?� She drew fourteen other children and parents around her as they all watched and enjoyed the Little Mermaid II.

TOIREASA decorated several ginger bread cookies on Sunday night (12/17), interacting with volunteers and other children in the Ronald McDonald House dining room. On Tuesday afternoon (12/19), TOIREASA and JULIA had a wonderful luncheon visit from J. Crew. Like I said before, there is no way to thank this company and the individual employees enough for all they�ve done for JULIA and TOIREASA.

A big thank you again for considering the Make a Wish Foundation, Ronald McDonald House and your local blood bank as gifts in honor of TOIREASA Barry. Each gift, no matter how small, is most gratefully received. The essential blood transfusion TOIREASA received during this chemo at CHOP made her discharge possible.

Current tests show significant hearing loss. Her lungs are not yet completely clear. The skin wound �on my butt� (as TOIREASA says it) is healing well. Final word from Dr. Maris on the heart is that the septic shock/myopathy TOIREASA endured in DC has left the heart functioning at only 24% capacity. This means she is at significant risk for even one stem cell rescue. The revised plan of action is to go ahead with harvest of the maturest stem cells from her blood stream starting the end of next week. The mild chemos would be repeated until she is healed enough to take either the stem cell rescue (involving near lethal chemos) or if this is not possible, total body radiation. Only those families and medical teams who have been through it can understand how devastating both procedures are.

Wednesday morning (12/20) TOIREASA went to clinic for a blood draw and check up. Very special visitors came for a big evening party: Ronald McDonald and friends including Mr. & Mrs. Santa Claus. TOIREASA�s Sheila flew into Philly from Chicago on Thursday. Melanie will see TOIREASA on Friday She�s driving home with a burned hand. She was striking a match to light the menorah for Hanukkah and the whole box of matches caught fire in her hand. That�s why Aunt Brenda is keyboarding this journal.

Our wish from TOIREASA and the whole family this holiday season�keep the magic glowing.
Warm regards
MAIORNA

Thursday, December 21, 2000 at 09:06 AM (CST)

Just another quick upadate from Uncle Mike . . .

HAPPY HOLIDAYS!
Toireasa is doing great. She's in wonderful spirits and is looking forward to Christmas and to turning 4 on Jan 7. She is out of the hospital and is staying at the Ronald McDonald House in Philadelphia.

Last night, they had a holiday party, and Ronald, Grimace (sp?), The Hamburgler, Frosty the Snowman, and Rudolph the Red-Nosed Reindeer all came. Toireasa particularly enjoyed meeting Rudolph. Then, Santa came and gave toys to all of the children.

I'm sure one of us will update this page again before Christmas, but I just wanted to wish everyone a happy holiday season. I'd like to extend a special thanks to everyone at the Ronald McDonald House and to the wonderful people at J.Crew.

Take care. Thanks for your prayers and support. And keep signing the guestbook! Toireasa loves each and every guestbook entry, no matter how brief.

Merry Christmas and happy holidays.

- Mike.

Thursday, December 14, 2000 at 04:14 PM (CST)

Thursday, December 14, 2000 at 05:06 PM (CST)

SEASONS GREETINGS TO ALL TOIREASA'S FRIENDS, AND THANK YOU FOR ALL YOUR PRAYERS.(This journal entry is written by TOIREASA'S grandmother, the keyboarding is by Toireasa's pre-school teacher).

After two weeks as an out patient at Children's Hospital Of Philadelphia (CHOP), TOIREASA was admitted to CHOP's oncology floor last Friday (12/8)as her heart problems took a turn requiring additional medication and close monitoring. Her mental outlook remains positive. She has accepted her new surroundings remarking, "It's not so bad...It's okay," and telling me, "I think I'm going to be here for a long time" (I took the train to Philly on 12/8 and stayed with her until 12/11). One of the reasons TOIREASA thinks CHOP is an OKAY place is because there is a McDonalds restaurant INSIDE the hospital!

Over the weekend, West Point Cadets brought gifts, big funny clowns brought cheer, a great band with singers came to each floor, and on Wednesday (12/13) Sesame Street characters - Big Bird, Grover, Elmo, and Bert- made a special visit and took pictures with each child. TOIREASA had been through a week of painful procedures as an out-patient, and had surgery on Tuesday (12/12) so these special events were a great help for her.

One of the procedures was a MIBG which scans the whole body for evidence of neuroblastoma. TOIREASA appears dormant (event free) at the moment. Part of the surgery on Tuesday, was bone marrow aspiration, to do yet another check and make sure there is no neuroblastoma present (this test result is not back from the lab yet). A stiff catherer called a medcomp also was inserted through her chest into her heart during this surgery. This stent replaces the broviac catherer that had to be removed at CNMC. It is used to painlessly administer medics, chemos, and do blood draws- especially, harvesting additional stem cells from her blood stream.

TOIREASA began five days of chemotherapy on Wednesday (12/13). This mild chemo treatment is being used to help keep her free of neuroblastoma until her damaged heart recovers enough to recieve the very severe chemos that are given just prior to the stem cells rescues.

The present chemo treatment is so mild that she is expected to be released from the hospital on Monday if all goes well. She would continue daily clinic visits to the hospital but would be again residing in "her home away from home" the very first Ronald McDonald House. The Monday release is dependant on how she tollerates the chemos, the condition of her lungs and most importantly - her heart.

Dr. Marris will let her stay out until her white cells recover from the chemo, as long as she doesn't get fever and infection. Once her white cells recover, TOIREASA will give up (harvest) additional stem cells from her own peripheral blood stream through the medcomp catherer.

In a national teleconference, involved physicians believe it is absolutely essential for TOIREASA to have TWO stem cell "rescues." Wiping out her current cells with intense chemo and then injecting her own stem cells is called a "rescue."

Right now, TOIREASA'S heart is not strong enough physically to sustain even one rescue. She is on two heart medications that are helping her heart to heal. When she is well enough, the 1st stem cells (immature, harvested from TOIREASA'S bone marrow) will be given back to her following intense chemo therapy. The recovery period in isolation can be up to 90 days, with risk of severe infection ever present.

Once recovered from the 1st stem cell rescue, TOIREASA would be subjected to an even more severe chemo therapy followed by a 2nd stem cell resuce (mature harvested from Toireasa's blood stream). Here again, she will be open to very significant, life threatening illnesses on her road to recovery.

To each one of you who have visited TOIREASA with messages on the Caring Bridge and on the CATS Forum THANK YOU, THANK YOU, THANK YOU! It means so much to her.

A very special thank you to everyone on the CATS Forum, and to the cast members of CATS around the world. Your messages and contacts continue to give her the strength of spirit to go forward. She's so appreciated the cast photos from Germany, with funny, "get well" placards. They arrived during her transition from D.C. to Philly. I know the Dream Cast video members who have contacted her wish to keep their anonymity. Be assured she treasures and speaks fondly of each contact you make with her -the shirts, hats, photos, e mails, and a very special poem.

I am weeping with gratitude as I write this - I wonder if all the individuals who worked on her special videos could imagine the strength, comfort and joy they have brought her; CATS, JOESPH'S AMAZING TECH. COAT, HEY! MR. PRODUCER, CELEBRATION. And yes, she even heard WHISTLE DOWN THE WIND from her mother's womb in performance at the National Theater in Washington D.C. courtesy of her Uncle Michael, who took the whole family.

She watches THE MAKING OF CATS often. She knows who you are. As she settled down last night for sleep after her first complete day of chemo therapy at CHOP, she asked her Mommy once again, "Please put on my CATS video," and went peacefully to sleep.

To BILLY JOHNSTONE...I have a photo the nurses took of you on Halloween, in cosutme at her bedside as her whole body was going into septic shock and her heart was collapsing. Her eyes are focused on you, in loving admiration. Thank you for the luncheon you hosted for TOIREASA and Julia, the week they transferred to Philly. Thank you for your magnanimous and constant care.

A very special word of gratitude to the entire company of J. CREW making it possible for Julia to stay by TOIREASA'S side as she struggled to recover from septic shock and cardiac myopathy to all four chambers of the heart. J. CREW employees gave of their own time so Julia could relocate TOIREASA to Ronald McDonald House and CHOP in Philadelphia.

The clock is ticking. Every moment these employees have enabled Julia to be with TOIREASA is precious. There is no way we can repay you. We can only say THANK YOU. If any of TOIREASA'S friends are out shopping for the holidays, please consider dropping a "Thank You" card off at your local J. Crew for Julia and TOIREASA, or just go in and shake an employee's hand on Julia and TOIREASA'S behalf. I wish I could give each of them a big hug.

The Ronald McDonald House in Philly is the original of its kind. TOIREASA recieved a warm visit at the hospital from Dr.Audrey Evans (now retired, in research)founder of the CHOP oncology department and co-founder of Ronald McDonald House. This house is indeed a place that love built.

Which brings me to our Christmas Wish- that the good that has been done for TOIREASA may be shared a thousand fold with other children in need. Please consider giving "IN HONOR OF TOIREASA BARRY" to your own local MAKE A WISH FOUNDATION OR RONALD MCDONALD HOUSE. Your gift will help another family as we have been assissted and , if you can, may I again ask that you give to your local blood bank, especially to those banks and hospitals for children. Give IN HONOR OF TOIREASA BARRY. This is the best Christmas Gift TOIREASA could recieve- the gift of blood to help another child.

Finally, thank you for the circle of love and prayers from around the world that surrounds TOIREASA. I know it was the prayer groups, churches, synagogues, mosks, and temples storming Heaven that brought TOIREASA through this recent crisis. I know, because I sat beside her for 14 days in intensive care and watched your paryers heal her. Your prayers brought her to CHOP and your prayers are even now guarding and sustaining her.

I am writing you from Washington, as I am a diabetic and have had to return here for dental and eye surgeries. I hope to be back in Philly very soon. This seperation from TOIREASA is very difficult as I have been with her since she was born. It also has been a difficult period for Melanie who is key boarding this letter for me. She was TOIREASA'S pre-school teacher at American University when TOIREASA was diagnosed in May. Melanie has been a strong support for our entire family, and a weekly ray of sun shine for TOIREASA. We can never thank her enough.

Julia does not have easy access to a computer right now. Her brother Michael has tried to keep the journal up to date. Please forgive me if what I have written is redundant.

Again, thank you all for everything - and a very special thanks to a very special person whose letter arrived (1st by fax) when TOIREASA was last in intensive care at CNMC. She had me read it to her over and over again. And she holds it tightly in her hands each time she watches your video.

All my love and gratitude,

MAIRONA
(TOIREASA'S grandmother)

Tuesday, December 12, 2000 at 12:29 PM (CST)

Hello Everyone!!! Toireasa and I found a computer -- AT LAST!

Well, Toireasa had her Med-Comp Catheter placed this morning and a sample of her Bone Marrow was taken for testing. She went through it like a champ.

I know that my wonderful brother MIKE has been filling you in, so I'll just let you know that we will be starting the chemo rounds tomorrow. AND it looks like we'll be able to go back to the Ronald McDonald house in five days!!!! We may even be there for Christmas!! YIPPEE!

Please know that we both love all of you very much and we are keeping you in our prayers!

God Bless and Have a Safe and Happy Holiday Season!

All Our Love

Julia and Toireasa :)

Monday, December 11, 2000 at 08:30 AM (CST)

It's Uncle Mike again . . . Julia still has not been able to get to a computer. She and Tess have been going to CHOP every day for a variety of tests, and when she returns the computers are unavailable. So you'll have to deal with my ramblings, however uneducated.

Toireasa unexpectedly was admitted as an in-patient at CHOP on Friday. Julia and Tess went to CHOP for their usual assortment of tests on Friday morning, and a few hours later, Tess was informed that she wasn't leaving anytime soon. Needless to say, Toireasa was quite upset. "You promised that this would just be a visit!" she protested. The nurses didn't even know what to say.

Toireasa is in excellent spirits, looks and acts completely healthy. However, her heart rate is through the roof. At rest, she's around 120 beats per minute, and it gets as high as 180. This is due to heart damage caused by the chemo -- the same damage that sent her into ICU last time. So it's imperative to be on top of it.

The doctors have Tess on all sorts of heart medications (I have no idea what they are, and certainly couldn't spell them if I did). The stem cell transplant has been put on hold until they get this heart thing fixed. If they went forward with the transplant right now, the results would be catastrophic. So patience guides the course right now.

Toireasa had some visitors this weekend. Stella's brother Paul and his wife Grace visited with their children Timmy and Sophie. Timmy and Toireasa colored. Tess throught Timmy was silly. Thanks for visiting, guys! And HI TIMMY!

Well that's about it from Philadelphia. Thanks for your continued prayers and good wishes. I hope everyone is having a happy and safe holiday season.

- Mike.

Tuesday, December 05, 2000 at 02:16 PM (CST)

Hello all --

This is Tess's Uncle Mike. I'm writing a quick update because Julia and Toireasa have been quite busy over the last week.

First, I want to thank all of you for your continued support. It's been so long since Julia updated this page, you may have thought you were abandoned. Rest assured, you were not.

Okay, on to the update . . .

Julia and Toireasa are staying here in Philadelphia at the Ronald McDonald House. (What a wonderful place!) Toireasa is currently being treated as an outpatient at CHOP. She's in EXCELLENT spirits. We went to see 102 Dalmations on Saturday (I know, no cats!). Toiresasa has been talking to anyone who will listen and just wants to play all of the time.

That said, we have received some bad news recently. It appears that Toiresasa still is experiencing heart problems, so the doctors have to fix that before they can even think about a stem cell transplant. Also, Toireasa apparently has experienced some hearing loss, which is a side effect of the chemo. She's getting fitted for a hearing aid this week. As far as Toireasa is concerned, she's just fine!

In any event, the schedule is (a) fix the heart, (b) install a broviac, (c) stem cell transplant. We don't know the order, and we don't exactly know the timing either. Toireasa probably will be in CHOP over Christmas, but I'm sure everything will be just fine.

Thanks for your prayers, they certainly are working.

- Mike Barry

Sunday, November 26, 2000 at 05:03 PM (CST)

Hello All!

Things are a little hectic right now, we're moving into the Ronald McDonald House here in Philadelphia and getting set up for Stem Cell at CHOP! I'll be back in touch soon, just know that we have you in our hearts!

We hope you had a wonderful Thanksgiving! We Sure Did!

Lots of Love,

Julia and Toireasa

Tuesday, November 21, 2000 at 12:42 AM (CST)

Her appetite is insatiable! She began eating at 10 am and didn't finish until 1:30. She had an amazing brunch -- Pancakes w/syrup, bagel, donut, coffee, milk, Frosted Flakes, followed with a McDonald's Chicken McNugget Happy Meal.

Toireasa then got up and went for a walk to the cafeteria where she bought an ice cream sandwich. She walked back up to the room, got into bed and proceeded to eat the entire sandwich!

Her Aunt Ellen returned to Brazil today, so after she left, Toireasa took a nap from 3pm to 6pm. When she awoke she sat up in bed and exclaimed...
"Do you know that I haven't eaten at all today?!"

I responded with a maybe not in the past few hours... and she laughed and said...
"Yeah, well, I'm STARVING!"

I went to get the princess her food, and when I returned she was rubbing her stomach. I asked her what was wrong, she said...
"My tummy looks funny... it's so fat, yet so empty!"

Needless to say she filled it with ham, tomatoes, mayonnaise, a cheesburger, french fries, cheetos and doritos.

So here's the plan... WE'RE GOING HOME ON WEDNESDAY! and we'll be in Philadelphia as of Friday.

I will keep all of you informed as soon as I can. But if you don't hear from me for a couple of days, bear with me, its going to be a very hectic couple of days.

May you and your family have a very peaceful Thanksgiving.

God Bless All of You and Your Families.

Love Always,

Julia

Saturday, November 18, 2000 at 08:27 PM (CST)

Well the Little Princess is on a roll!

Today was another exemplary day for the miracle child! She had 4 walks on the floor today, her aunts and uncles came in for a visit and she played charades, connect 4, go fish, to name a few!

All in all she is doing wonderfully! The doctors are all still thinking early this week we should be able to go home -- like late monday or tuesday. But, knowing this place we'll probably be stuck here until wednesday or thursday. Hopefully we'll be home for Thanksgiving.

She is still having me read -- every night -- the days messages -- so PLEASE keep leaving them!

It truly means a lot to us to know that all of you are out there praying for us and thinking of us every day. It keeps her going.

I have a little anecdote to pass on from Toireasa...

Yesterday evening, Toireasa was eating dinner. She casually said...
"Mommy, you don't have to worry about me because I'm brave"

I said, "Oh sweetheart you are the bravest girl I know!"

She replied, "I know, but I don't get scared anymore because God told me to be brave."

Nothing more needed to be said. Toireasa went back to eating her dinner and watching CATS.

His Wonders never cease!

All my love,

Julia

Friday, November 17, 2000 at 11:32 PM (CST)

Hello All and Welcome To Toireasa's Miracle!

THE LITTLE PRINCESS WALKED! For the first time today in over 7 weeks! There were more tears in everyone's eyes today! But this time they were tears of joy! She even scared a few people coming around the corner that they dropped their lunch! HA HA HA!

She continues to eat well and improving that her TPN and LIPIDS will end tomorrow around noon, and we should be home Monday or Tuesday of next week!

God Bless You All!

Love Always!

Julia

Thursday, November 16, 2000 at 06:58 PM (CST)

Can I just tell you that since I told everyone that we were moving to CHOP that this place has gone upside down! I have never seen it so clean, organized and staffed since we got here May 19th. But, it doesn't change my mind about leaving. I just hope that what is being changed her will save another child!

Now, on to Toireasa...

SHE IS ABSOLUTELY AMAZING!

Toireasa got out of bed today and we went for a walk in her stroller around the enire floor, playing hide and seek with her Aunt Ellen. It was so much fun! We found this one playroom that had a fish tank in it... well needless to say, Mr. Mistoffelees jumped right out of the stroller and tried to get into the tank! Toireasa thought that was "sooo funny!" and that mommy was "sooo silly!" for doing it!

She got up and stood today. We tried to walk but "I'm still a little wobbly." So, we agreed that we'd try again tomorrow. She has a bunch of kittens that we use for physical therapy, and that is beginning tonight.

She ate like a horse today! So much so that they are having us literally notate every little sip so they can get an accurate calorie count -- we may be able to stop the TPN and LIPIDS that she's been getting every day, 24 hours a day. They think that she is sustaining herself.

Well my little miracle child is calling me, so I must return to the princess.

I will update you all again as soon as possible. In the meantime keep those prayers going!

God Bless!

Julia

Wednesday, November 15, 2000 at 09:50 PM (CST)

Well things have been so hectic here that it literally feels like Friday NOT Wednesday!

Yesterday, Toireasa had her Juggular line taken out and her PICC line and a Perephial IV line put in. Surgery came down and took a look at her bottom and he was able to remove the absess! YEAH! So now we just have an open wound that is on its way to healing!

Surgery then came by in the afternoon and inspected the site, read over her grocery list (laughed hysterically -- it's 2 columns long!) and decided that yes indeed she could eat!

So the little princess told us that she could only have soft food -- so she ate yogurt, alphabet vegetable soup and then two hours later ate an entire turkey club sandwich with lots of mayo!

Breakfast this morning consisted of pancakes and syrup, sausage, cranberry juice and Lunch was hotdog, baked beans, and vanilla pudding! So much for the soft food!

We still haven't gotten up and walked yet, so our goal for tomorrow is to stand up for the first time in almost 4 weeks! Wish us luck!

We're still working on the transfer to CHOP. Everyone here, including the head of the hospital is in on trying to get us to stay. Let me just say that this whole thing is turning into a nightmare!

I will let you know what and when everything happens.

Thank you for everything you have done for Toireasa. It means more than you will ever know!

God Bless You and Your Families!

All my love,

Julia

Monday, November 13, 2000 at 10:26 PM (CST)

Well, I have started the transfer process! Dr. Perez-Albuerne of CNMC has been in contact with Dr. Maris and Dr. Grupp at CHOP and we are scheduled to be in Philly the end of the month for evaluation.

The current holdback is the open sore on her left buttocks that is refusing to heal fast! The surgeons keep saying "It will take time" but unfortunately, time is not what we have much of!

We have a very small window to start the Stem Cell Rescue to give her the best chance for non-recurrance. So we are just in a holding pattern!

Toireasa though is doing fabulously spirit wise - thanks to all of your messages and kind thoughts and stories! She is taking sitz baths twice a day to help the healing process and is, of course, giving direction to everyone! She even made a grocery list today! Top on the list -- Donut Holes -- followed by -- Coffee, Sugar, and Milk -- and it went on from there! She is hysterical!

We love you all, and will keep all of you updated as things progress.

Know that all of you are in our hearts and prayers.

God Bless,

Julia

Sunday, November 12, 2000 at 11:18 PM (CST)

Well if I had any doubts about my transferring Toireasa to Philadelphia then they were washed away this morning!

Her night nurse marked down on Toireasa's flow sheet that Toireasa had taken her Hydrocortisone - needed for her adrenal failure. When I questioned that, and asked Toireasa if she had taken it, Toireasa said "NO".

The day nurse then went to the medicine bin and found an extra dose of Hydrocortisone! She then had the charge nurse call the night nurse at home and the night nurse admitted that Toireasa had not been given it.

God certainly works in mysterious ways!

Now the work must begin! Between juggling the insurance and the transfer papers -- not to mention the successful transfer of the stem cells to CHOP -- it is going to be difficult, but in the end run I believe successful!!!!!

Wish us luck! And keep those prayers going!

God Bless You All.

Julia

Saturday, November 11, 2000 at 07:30 PM (CST)

His Miracles Never Cease To Happen!

Toireasa is back on the floor in her OWN ROOM! And she looks GREAT!

Her butt is still healing, so we have a way to go yet before we are released, and we have to watch for infection because it is an open wound. I will spare all of you the gorey details... know that it's really gross!

Her spirits are up and she is back to directing her treatment. Everyone is shocked that she has made it -- she really is a fighter!

We will most likely be having our Stem Cell Rescue at another hospital -- my lack of faith in these guys here at CNMC is growing -- and I will keep all of you updated on the decisions that I make. I just hope that I make the right one -- I have faith that He will direct me down the right path!

Thank you for praying for us -- keep it going! She definitely would not have made it if it weren't for all of you -- The POWER OF PRAYER!

Know that we are praying for all of you as well!

Much Love in Him,

Julia

Friday, November 10, 2000 at 03:49 PM (CST)

I've heard of FAN CLUBS but I've got to tell you - YOU ALL ROCK!!!!

Here's the best news! Toireasa is being transferred to the floor! We're leaving PICU!

Well, she is... I'm here in Philadelphia doing a little research. It's pretty cool up here at Childrens Hospital of Philadelphia. Will have more info later...

Toireasa is continuing to improve with each day and with each inspiring note that you leave her.

Thank you for all of your hopes and prayers.

KEEP THE FAITH! GOD BLESS YOU ALL!

Lots of Love in Him,

Julia

Thursday, November 09, 2000 at 03:57 PM (CST)

Will HIS Wonders Never Cease???

Toireasa is sitting up in her bed, drinking water, watching CATS, the MAKING OF CATS, HEY MR. PRODUCER - over and over again!!!

She looks a thousand percent better! And is doing so well, they expect us to be back up on 4-Yellow in the next day or so!

KEEP THE PRAYERS GOING!

I've been printing out your messages daily and I firmly believe that the fact that she gains her strength from hearing how many people BELIEVE!

The Magic that is Now And Forever continues in the heart of this special child.

God Bless and Keep You Near His Heart
as you are all near mine.

Much Love and Thanks,

Julia

Wednesday, November 08, 2000 at 09:41 PM (CST)

It Truly Is A Beautiful Day!

Toireasa's ventilator tube was removed at 6:30 pm this evening! She breathing on her own!!!!!!!

Ok, some of you have asked questions concerning her treatment, her self, etc... I will try to answer most of them now...

Toireasa Margaret Barry
3-1/2 years old
pronounced TOY-RAY-SA

Her favorite cat is Mr. Mistoffelees because he brings Old Deutoronomy back from the dead and "I'm not ready to go there yet!" -Toireasa.

Victoria is beautiful and brings her peace.

Munkostrap is loved and has been assigned to me because... "Munkostrap fights Macavity like my mommy fights my cancer"

There is only a 15% chance of survival with Neuroblastoma. There are numerous websites out there that have tons of information. To help sort through it I can tell you to start with www.cancer.com. If you can get through to the New England Journal of Medicine, there is an article in the Fall of 1999 that decribes this exact protocol and the percentages surrounding it.

A lot of this information is extremely confusing and over the next couple of days I will try my best to fully explain.

Neuroblastoma is one of the most dangerous of all childhood cancers because one can never be in remission just event free.

Keep us in your prayers and know that you are in mine.

I'm working on answering all of your questions so please bear with me.

All My Love,

God Bless,

Julia

Wednesday, November 08, 2000 at 12:39 AM (CST)

Thank You All for your PATIENCE with me through all of this! I wanted to wait until after I met with all the doctors before I said anything, so here it goes...

Toireasa's heart is approx. 95% Normal! All Your Prayers Are Working! The Cardiologists feel that she should be back to 100% within the next 2 weeks.

The infection is still causing problems, but we are on so many antibiotics that we are keeping it at bay. Everytime it shows its ugly face Toireasa fights it off!

We are watching her kidneys carefully -- after all she has 4 and a ureteroceole in the bladder -- we don't want any problems there -- but so far they look like they are functioning fine.

Where do we go from here...
Tough Question -- Tough Answer. In speaking with the docs today they still feel that her best chance is to go through Round 6 and her Stem Cell Replacement. They gave me the percentages -- without the stem cell replacement she has only a 20% chance of living another 3 years -- with the stem cell replacement she has 55% of making it to her 6th birthday.

BIG DIFFERENCE!

Now the question is where to have it. Do we stay at Childrens, or look elsewhere. I want to give her the best chance at surviving. They are trying to find me the numbers of how many kids actually survived the replacement and this protocol vs. how many started it.

Know that she isn't giving up and each one of your messages on this website mean so much to her and give her that little extra strength.

I wanted to thank the CATS forum for starting the prayer circle -- you might want to join -I know I have -- every hour on the half hour stop and say a prayer, thing a good thought, send a good vibe to Toireasa and help make this miracle happen.

She has received many of your gifts and we open each envelope and box in the room! Her face lights up and she is starting to ask questions!

She's trying to speak, but the ventilator tube is still in (probably for another 3-4 days) but she is breathing on her own for at least 4 hours a day now. The docs are trying to get her strong enough to take the tube out.

So keep praying we have a LONG ROAD ahead of us. We couldn't have made it this far without all of your love, prayers and hope for my beautiful daughter!

Thank You and God Bless Each One Of You!

Julia

Sunday, November 05, 2000 at 09:16 PM (CST)

Another day in PICU another setback! Toireasa has had another set of positive cultures for pseudomonus. We believe that the infection was due to the attempted aspiration of the primary site.

No change on the heart, we're still awaiting the next echo tomorrow. PICU wants to remove the ventilator, but cardiology doesn't want it touched until after the echo can be reviewed.

She is more alert and trying to wake up. She's getting stronger and is less swollen. So hopefully we are going in the right direction.

I'll have more information for you all soon
Thanks for all the messages, Toireasa Loves Them!

Keep Praying For Us.

God Bless,

Julia

Saturday, November 04, 2000 at 03:02 PM (CST)

Okay, Okay, Okay!!!
I'm sorry that I haven't updated this wonderful site, things have been rather hectic! (of course that's an understatement!) So here it goes...

We have been focusing on getting the fluid level in her down. And as far as that goes, we're doing ok. We have her on LASIX which is flushing her system. Her feet are back to normal! She is still holding A LOT of fluid in her abdomen, so the LASIX is now on a drip.

Her blood pressure is high, so they are adding a new medication to lower the pressure of the heart. Her current BP is 135/88 normal is around 120/60 so we have a little problem there.

The infection seems to be getting under control. The only positive culture she has had recently has been for yeast. So we've added another medicine to cover that.

The Heart continues to be the wild card. The cardiologists have done 3 Echo Cardiograms and the numbers have been the same. So they will not do anything again until Monday at the earliest.

IF the heart is swollen due to the infection and is not damaged, then it should heal itself as soon as the fluid levels go down. IF the heart is swollen due to damage from the infection or the chemo doxirubicin then we will need a new heart... only time will tell.

Thank you for all your support and letters to Toireasa they really brighten up her day! I ask one thing though, bear with me. Please do not call the hospital as the phone ringing in the room is very disturbing to her. Email me at the below address or at jbtess@yahoo.com and I will get back to you as soon as I can.

Know that I love you all and you are all in my thoughts and prayers as well.

God Bless,

Julia

Friday, November 03, 2000 at 01:37 AM (CST)

One full day in PICU and I do have some more information for all of you angels.

Toireasa's enlarged heart is due to one of two things... it could be either due to the pseudomonus infection in her body or it is due to the chemo Doxirubicin that she has been on for 5 months.

IF it is due to the infection, the heart should repair itself as soon as the infection goes away, and she'll be all hunky dorey again.

BUT... if it is due to the Doxirubicin, then her heart has received permanent damage and 3 things could happen. First, she could go on living and taking medication daily to ensure that her heart would keep beating. Second, it could heal itself over time. Or Third we go on an immediate donor list, and pray that we receive one.

She is extremely critical, but is awake. She knows what is going on around her and I read all your postings to her daily.

The magic of CATS really is now and forever and don't let anyone tell you otherwise. Keep praying for her and donating blood, I'm sure that there's another child out there in a similar situation that could use a little CATS magic too.

God Bless You All.

Julia

Thursday, November 02, 2000 at 02:36 AM (CST)

Well, things couldn't be more confusing. I am going to try my best to explain everything, so please bear with me...

Toireasa has been diagnosed with "serious heart failure", her right lung is partially collapsed and filled with fluid, her right side is filled with fluid and her left side is filled with gas.

The pseudomonus infection has taken over her body. They believe that the cause of this is her broviac catheter - so it will be removed later today. She has been unable to do anything other than lie on her right side, so they feel that that is the cause of the lung collapse. The heart is a different story.

Her heart is severly enlarged (we all knew she had a big heart, but this is ridiculous!). The believe the cause is the sac that surrounds the heart has frozen and is prohibiting the heart to pump properly. The upper chambers of the heart are collecting blood, but the lower chambers are not receiving it, so the blood is backing up into the veins - hence her bloated look.

So to ensure that the heart will survive and to give her a fighting chance she has been sedated and put on a ventilator. She will be kept unconscious until we are sure that the heart can support her -- because right now it can't.

Mr. Mistoffelees is in her bed with her, Victoria is by her side, Munkostrap is watching over the scene to ensure that nothing goes wrong and Coricopat is guiding her through it all.

The magic of CATS is forever and it lives throught this precious little girl who I have the privilege of calling "my daughter".

God Bless You All

Julia

Wednesday, November 01, 2000 at 09:44 PM (CST)

Well this has been a very active day. We have had everyone from Radiology to Cardiology in here and we are currently on our way to the Pediatric Intensive Care Unit (PICU).

I had them take a full torso x-ray and then they followed it with a sonogram and then an echo cardiogram. Toireasa has been diagnosed with "medium to serious heart failure."

They are putting her on drugs to help her heart pump, but for now we are not doing the white blood cell transfusion. We are still desperate for 0- Blood and Platelets.

If you live the the Washington/Baltimore area go your nearest Red Cross or come here to CNMC and donate. If you live outside the immediate area, donate in her name -- there is bound to be a child in your area who is desperate for blood and can't find it -- that little one may be next door.

Thank you again for all your prayers, and know that I read this to her every night. Your wishes make her smile... and me too!

God Bless!

Julia

Tuesday, October 31, 2000 at 05:33 PM (CST)

This may be the night of goblins and ghouls, but all I have seen and heard from today are ANGELS! Thank you everyone for responding so quickly. We have two donors currently who are going to go through the entire process. We are keeping a standby list in case of emergencies - ie one of the donors gets too sick, she rejects the cells, etc.

There are side effects to the donation - many well people get very sick from the neupogen shots - bones ache, flu like symptoms. So we are keeping the standby list just in case.

The doctor in charge of this is Dr. Evelio Perez-Albuerne (202) 884-5000.

Even if you are unable to donate white blood cells, if you are O- and located in the Washington/Baltimore area and can donate blood and/or platelets, please go to your nearest Red Cross or here to Children's. It is getting extremely difficult to find matches for her blood transfusions. She needs at least 2 blood and 3 platelet transfusions a week.

Thank you and God Bless All Of You!

Julia and Toireasa

Monday, October 30, 2000 at 11:24 PM (CST)

WE NEED YOUR HELP DESPERATELY!
We are in search of an "O-" Donor for WHITE BLOOD CELLS! We need to find someone who can come to Baltimore within 48 hours to start this process. If we do not find someone Toireasa will not make it.
Please, call your friends, your neighbors and leave a message here or on my email -- julia_barry@hotmail.com.
We need a miracle.
God Bless You All
Julia and Toireasa

Tuesday, October 24, 2000 at 10:52 PM (CDT)

Well, we finally got the results of the bone scan back - NO EVIDENCE OF DISEASE! There is a hot spot on her left leg where the fracture was, but all believe that it is just new bone forming and nothing else. So, the pain in her spine is still confusing to all. Her blood has grown out some gram negative cultures so we have some form of e-coli infection - oh joy! - but they changed the antibiotics and we are hoping to get it under control. The morphine drip is only 1 ml per hour and has alleviated the pain in her spine, but she has developed a severe case of mucusitis in her mouth and groin so she is very uncomfortable.
I printed out her guest book for her and read the latest posts last night with all of you wonderful people from the CATS forum. She immediately wanted to watch CATS and after the video, she sat up and ate an entire ham sandwich, a bag of cheetos and 1/2 a bottle of coke!
Keep Leaving Those Messages! The Magic is Continuing!!!!!
Much Love and God Bless You All!

Julia and Toireasa

Monday, October 23, 2000 at 01:58 AM (CDT)

Hi Everyone:
I know it's been a while since I've updated this, but I've had a cold and Toireasa's been in the hospital with fever, intense back pain, etc.
Things are not going well for the little princess, but she's tough and a real fighter. I am amazed daily on her will to live and strength to survive.
We had a visit recently from our CATS angel and she received gifts from CATS fans from around the world. I can't tell you how wonderful it was to see her smile.
We've been here at CNMC since last Wednesday and we'll probably be here for a while longer. They're running bone scans, x-rays, cts, to try and find the source of the pain, but for now she's on a morphine drip and is holding on.
Keep praying for us.
God Bless,
Julia and Toireasa

Sunday, October 15, 2000 at 01:51 AM (CDT)

Hello Everyone!
WE ARE HOME! ... and the pathology lab has reported that the tumor has NO EVIDENCE OF CANCER CELLS and the lymph nodes ARE ALL CLEAR. Which means - WE'VE BEATEN THIS DAMN THING!!!!!
So We still have the Stem Cell Replacement to go through so I'll update you as soon as I can. Keep leaving those messages - Toireasa loves them!

God Bless!

Julia and Toireasa

Thursday, October 12, 2000 at 04:49 AM (CDT)

Well, two days down, two to go! Toireasa gave us a scare this morning - violent vomiting! No fever though! So I had them check her nutrient levels and found that her magnesium was a little low so a bolis of mag later and we seem to be doing fine!

We've gotten the morphine level down to 1ml per hour and that seems to be working fine so hopefully we will be able to "kick the habit" by the time we leave on Saturday!

I've printed out the entire guestbook for Toireasa and I update it daily for her - she keeps it by her bedside - and she has me read everyone's notes to her at least once (sometimes more depending on how she feels) a day! So... Keep Leaving Those Messages! They really do help her!

The plan is still to go home for a few days on Saturday and she is really looking forward to that - and sleeping in her own bed!

Thank You All For Everything!

God Bless,

Julia and Toireasa

Tuesday, October 10, 2000 at 08:39 PM (CDT)

Well, we have made it through the first day of Round 5 - the final set before stem cell replacement. Toireasa is doing wonderfully! She is up and walking around, eating like a horse, and playing her heart out!

The doctors feel that she is doing so well, that when we go home this time, we will not be on additional nutritional supplements! So, for the first time since May 19, Toireasa will be able to stay in her own room and sleep through the night! She is so excited!

We are still awaiting receipt of the article on the cause of NB so we can evaluate our next steps to ensure that the cancer does not come back.

We've beaten the cancer, now we've got to beat the chemo. Keep praying for us and we'll be praying for all of you as well!

God Bless,

Julia and Toireasa:)

Tuesday, October 10, 2000 at 12:13 AM (CDT)

Hello Everyone!
Well, through it all, Toireasa has been a real trooper! She got up and walked on Saturday night and had a lovely Tea Party with one of the nurses on Sunday! Monday consisted of a voracious appetite which totally shocked the surgical team when they arrived and she was eating a bag of cheetos!
There have been new developments on the NB front - doctors at the Albert Einstein Institute of Medicine in NY have found the cause of NB! HIP HIP HORAY! Now all the tough questions need to be asked and answered. Unfortunately, NATURE journal of medicine has an embargo on the entire report until Wednesday, so we will have to wait and see how this new development will affect her and other NB kids treatments.
But, she is doing so well that she has begun her chemo round 5! So, if all goes well, we should be home by Saturday!
Toireasa sends big hugs and kisses you all of you for all your well wishes and prayers. Dr. Perez believes that unless something dramatic has happened (which is highly unlikely with her response and the fact that all previous tests have appeared normal) that we are CANCER FREE! We will have the final tests within the next two weeks to prove it but we firmly believe that through all of your prayers for her that we have CONQUERED THE CANCER AND WON!
I will keep you updated!
God Bless you all!
Julia and Toireasa

Saturday, October 07, 2000 at 02:56 AM (CDT)

Hello All:
These past few days have been almost surreal! Toireasa entered the hospital on 10/4 for surgery on 10/5 and at 10:20 am on the 5th as they were calling us for surgery, Toireasa went into Hypoglycemic shock - consisting of body convulsions, seisures, screams and completely dialated eyes! So surgery was postponed until Friday the 6th.
I am happy to report that the surgery went well! The surgeons - Dr. Gary E. Hartman and his team were able to remove the entire tumor - which was not attached to the left adrenal gland as we originally thought - IT WAS THE LEFT ADRENAL GLAND! The biopsied the lymph nodes adjacet to see if they are clear and pending that, Dr. Perez-Albuerne, our oncologist, believes that we are, for all intensive purposes - NED! (No Evidence of Disease!)
We're in PICU for observation and to monitor her glucose levels to ensure that her remaining adrenal gland is working.
Keep leaving her messages - she loves to read them - they keep her going!

God Bless!
Julia and Toireasa

Tuesday, October 03, 2000 at 02:42 PM (CDT)

Hello All! Well, we just can't believe all the wonderful messages we have received! I need to update you all. We have been home for a week thanks to a special visit from a member of the CATS 2000 cast, who brought so much joy that our counts went from 0 to 350 and we went home!

Tomorrow we go in for prep for surgery. The cat scan showed that it's mainly scar tissue and the surgeons think they can get it all out - so here we go!

We'll update soon, after surgery and I'll try to get new pictures on ASAP!

Much Love To All!
God Bless
Julia and Toireasa

Sunday, September 17, 2000 at 02:07 AM (CDT)

It has been awhile since I was able to update this wonderful website - our link to the outside world. My apologies for taking so long.

BUT ... WE HAVE GREAT NEWS!

The CAT scan results came back and you can see light through the tumor, which means that it is majority scar tissue, which means it will be easy to operate on and remove because in all sense it is an INACTIVE TUMOR!

Can you say we've been "doing the happy dance!" But we have also been very aware of everything that is happening. This recovery from round 4 has been very rough. We finally had an ANC of 50 yesterday, but we could be back at zero today. The doctors are pretty sure that we've gotten a good hold on this cancer and we'll know for sure after round 5 when we do the final MIBG -- but even the docs are excited, so we can't help being that way too.

Toireasa's spirits are up and she, even with all the bacterial infections, is doing well. She's off the morphine and is up and walking around without being too "wobbly"!

Thank you everyone for checking us out and leaving Toireasa notes - they really mean a lot to her!

God Bless!

Julia and Toireasa

Monday, September 11, 2000 at 10:56 PM (CDT)

First, I want to say thank you to all of you who have stopped by our little website! Some of you who have left messages I haven't heard from in years and it is really wonderful to see that friendships really do last through the years!

Now, on to Toireasa. We have had a very difficult weekend. The bacterial infection in her blood had basically taken over on Saturday and we were very close to loosing her. But her determination to live is what saved her. She got herself up every hour to move about, stretch, or just yell at me. Anything to get the blood moving and her blood pressure up.

We're still having fevers, though not as high as Thursday, and the pain in her right side is still there. Though thanks to Morphine every 4 hours, we're able to control it.

She is still working with Physical Therapy every day and is getting so much stronger. Her left leg is almost as fat as the right one, and just as strong! The original dx from PT was that we would not be walking without the walker for another 6 months. Now they can see her without it by Halloween! GO TOIREASA!

She forces herself to get out of bed and walk the length of the hall to see Bradley, she is so worried about him! If you haven't heard me speak about Bradley in the past, check out his website at caringBridge.com/page/bradley. Both Toireasa and Bradley were dx about the same time and are on exactly the same protocol, round of chemo, etc.

She is deeply saddened by the closing of CATS and talks about her trip every chance she gets! Our quick overnight trip was a turning point for her and I just wanted to quickly thank Mark Savary, CEO, J.Crew, and everyone up there for making a few hours very special! She can't wait to come back! And to the Make A Wish Foundations in New York and DC for pulling off a small miracle!

We're getting ready for some heavy stuff here and I'm sorry that this is so long, I just don't know when I'll be able to log back on to update, so I'm trying to get everything on right now.

As soon as her counts are high enough, she will have surgery to remove the remainder of the tumor on her left adrenal gland. Round 5 follows then the 2-3 week waiting period followed by the roughest section of this treatment. The 6th Round of Chemo is absolutely intense 5 day therapy which is immediately followed by her stem cell replacement. I promise to explain this in full as we get closer.

Thank you again for all your notes for Toireasa and prayers for her.

We love you all.

God Bless,
Julia and Toireasa

Sunday, September 10, 2000 at 01:07 AM (CDT)

Hello All:)
Toireasa's Blood Pressure has finally stablized! YEAH! We're still touch and go but, at least for now we're not in ICU! She's upbeat and has an ANC of 25 today! It'll probably go back down tomorrow, but it was a good sign that her bone marrow is starting to work and fight off the infection!

She checked in earlier and saw all her notes and was absolutely thrilled to see everyone's notes for her. She had me read ALL of them over again!

Keep us in your prayers, we're still touch and go so keep praying for us!

We'll update this as soon as we can!

God Bless!

Julia and Toireasa

Friday, September 08, 2000 at 12:47 PM (CDT)

Hello All:)
It's been a rough day but we are finally making it through. The ultrasound showed some thickening of the intestinal wall, but they don't think it is anything too serious. The pain they believe is due to some slight constipation. So they are going to put her on morphine to calm the nerves and a liquid diet (maybe) tonight.

She knows why she is here and is dealing with it OK. She really wants to be in NY to see the final performance of CATS, but she understands why she can't.

All your messages to her gives her a smile every day - So Keep Leaving Them!

Thank you all, and God Bless.

Julia and Toireasa

Thursday, September 07, 2000 at 11:03 PM (CDT)

We finished round 4 on sunday and have been home ever since, so I apologize for not updating this sooner!

Toireasa is now walking without the walker! She went shopping on Wednesday and that blasted thing never made it out of the car! She crammed everything she wanted to do before she returned to the hospital in on Wednesday and a good thing too. We're back in.

Toireasa developed abdominal pain on her right side - cause unknown. We've had 4 x-rays and are awaiting the sonogram.

Pray for us.

Julia and Toireasa

Friday, September 01, 2000 at 08:53 PM (CDT)

Well, August is finally over and did it ever go out in style! Toireasa began Round Four on the 30th and yesterday the 31st she already needed blood! After receiving the much needed supply, the little princess was up and running around the floor again, only to be hampered by a slight miss communication - ok the docs ignored what we had told them she needed to make it through - and after we finally got the medics straightened out so she was not vomiting anymore, we have been chipper as a blue bird on a bright spring day!

The Little Princess, as she is becoming known, has begun to walk without her walker! Still a little unsteady (or as she puts it "wobblely"), her determination and strength is a boost to everyone here on the floor and throughout the hospital!

With any luck we will be home on Sunday evening for a few days. These next few months are extremely critical and it's a miracle that she's come this far.

Thank you for all of your prayers for her - she wouldn't be here without them! Keep leaving her notes - checking her web page is the best part of the day! I really wish you all could see her smile when she reads them!

God Bless You All!

Julia

Wednesday, August 30, 2000 at 09:05 PM (CDT)

Hello Everyone!

Well, Round 4 has begun! Toireasa is doing very well with the walker and is now trying to walk withoutit! Hip Hip Horray! Ok, today was a stellar day for the young princess - she babysat Cassie and Bradley! She even got the Bradley the tyrant to stop crying! A first for even us parents!

She is still upbeat and can't wait for Sunday to go home! (Well, as long as I keep playing CATS on the vcr, she's happy!)

Thank you everyone for stopping by and leaving notes for her, the smile that you bring to her face is incredible!

God Bless!

Toireasa and Julia

Friday, August 25, 2000 at 03:29 PM (CDT)

Hello All and thank you for all of your wonderful notes! Toireasa and I are sitting here in the Tenley/Friendship Library in Northwest Washington, D.C. She is so excited about all the special messages that everyone has left for her!

We are currently home awaiting our counts to get high enough to begin chemo round 4.

So we won't be updating this page again until we're back in because these next few days are "PLAY DAYS" and we're going to have lots of fun!

Talk to you guys again soon!

Keep Praying For Us!

God Bless,

Julia and Toireasa

Sunday, August 20, 2000 at 10:46 PM (CDT)

Well, Toireasa's counts are finally going in the right direction... UP! We were at 150 this morning and at 180 this afternoon - so we may be home tomorrow! Her potassium level is not so hot so she's had two infusions of potassium today, and we may have to have one more before we go!

On the Walking Front - it keeps getting better! Her Physical Therapist Sharon has done absolute wonders with her - we've created games and started her on simple ballet steps - and of course we're dancing to - what else! - CATS!

Even if we go home tomorrow, we will only be home for approx 48 hours before we start Round 4! Which will lead to surgery to remove the rest of the tumor then Round 5, so we don't expect to see much of the outside for the next two months!

Toireasa loves to read your messages - So PLEASE Keep Leaving Them!

Thank you for taking the time to check out Toireasa's website and for taking the time to care.

God Bless,
Julia and Toireasa

Thursday, August 17, 2000 at 08:37 PM (CDT)

First, I would like to thank everyone for signing on to Toireasa's website and leaving messages for her. I can't even begin to explain the joy she feels as we read all of your wonderful wishes and hopes for her.

She is doing exceptionally well today! All mouth sores are gone, and she's feeling so much better! She was drag racing another mother down the hall today!

With any luck we will be home by Sunday for at least 4 days before we start round 4.

Thank you again for all your prayers and wishes of hope.
God Bless
Julia and Toireasa

Tuesday, August 15, 2000 at 10:32 PM (CDT)

Well, we started "Ampho The Terrible" last night (ampho-B an anti-fungal medication) and with the full prep of Demerol, Tylenol, Benedryl and Hydrocortizone, she's doing wonderfully. Cassie went home today so Toireasa is a little upset that her friend is not here, but with Bradley, Chris, and now Bobby on the floor, she's going to keep herself busy. The walker thing is doing great! Tonight, when they took Bradley's vitals he started screaming! She looked at me and said "Mom, let's go back to my room so I don't have to hear this!" Then she RAN down the hall! Everyone on the floor was laughing so hard - as was Toireasa - that it made her go even faster! The Physical Therapist says we may have to be on the walker for 4-5 months, but at the rate she is going, you never know!

Her ANC is still zero, so we'll be in for a while - but if things go like they have in the past we should be home by Sunday. Keep praying for us.

God Bless
Julia & Toireasa

Monday, August 14, 2000 at 11:57 PM (CDT)

Well, Toireasa had another stellar day until her counts dropped! But even at absolute zero and having a blood and platelet transfusion, she still got up and walked all over the floor! Her biggest concern right now is taking care of another little girl on the floor Cassie Carneal - check out her website, it's linked to ours - so Toireasa just wants to be near her.She's not eating right now, because of the mouth sores that have begun, but her spirits are up - as long as CATS and JOSEPH are playing on the VCR!
Thank you everyone for all of your support and prayers!
We Love You!
God Bless
Julia & Toireasa

Sunday, August 13, 2000 at 12:11 AM (CDT)

Most of you are aware that Toireasa broke her leg April 10, 2000 and hasn't walked since. Well now for some GREAT NEWS! There Are NO TUMORS on her legs and the fracture is healed! So She is Starting To WALK AGAIN! PT has brought her a walker with 2 wheels on the front and she is bound and determined that she is going to be running after Bradley (nb 16mths) who runs all over the place here at CNMC! Seeing CATS has given her the strength to get through these next and final rounds before the stem cell replacement. Thank you Everyone for keeping us in your prayers, and know that I thank God every day for each and everyone of you.
God Bless!
Julia

Monday, August 07, 2000 at 10:16 PM (CDT)

This web page has been designed to keep Toireasa's many friends and loved ones updated on her progress. Check up here often, and please sign our guestbook.

Sunday, August 06, 2000 at 08:59 AM (CDT)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----