June 2, 2003

Hello All,
        Well the rain has ended and the sun is out today! It is a good mood elevator! Joelle has not been feeling well for a week now- I am sure the culmination of life is part of it! But she has the fever, throat, and no energy. Thank goodness the teachers and administration  have been helpful at her school.....not to mention the Mrs. G -the school nurse. Unfortunately, many of our plans had to be canceled as well.
Courtney Wagner and Mom (Holly) were planning to visit on Friday as well as the Squillaro's were up here from NJ and we were going to meet them at the hotel. We canceled going to the Cove meeting Sunday evening as well!
Hopefully a couple more days and she will be back on track.....
Joelle's garden that she did with Larry is doing great! Joelle loves her garden! My Swedish grand father was a professional gardener-so I guess that is where she gets it. Laura use to laugh and say that she liked the products but that the vegetable garden was Joelle's thing!
Memorial weekend we gave two families Pennies From Heaven and even went bowling with them-we had a great time! They are 5 and 2 yrs old. Joelle enjoyed this! And on Sunday The Zambrano family came up and planted the tree that they and Nikki's parents bought for us at Christmas time. It was good for Joelle -she enjoyed her talk with Aaron. It was also good for her to see that not all hem/oc children react like Laura  did.....
Last week the Freshman class had the sale of the purple ribbons for Laura's
memorial scholarship -- it sounds like they did well! And this past Sat. the
sophomore class had a car wash to honor Laura. So we took Laura's car
(which Laura gave to Joelle) to be washed! It was nice to see school friends I know and do not know giving up another day for her! From what I understand, the money will go to possibly the Ronald McDonald's house and the scholarship for Laura.
Then, two lovely young ladies from Avon High came over to do a profile on Laura for the school paper. It will be about how she affected the community-so watch for it! I know Laura will be happy to see this as she enjoyed being on the school paper with Mrs. Marzano in Pine Grove and then at the middle school!
This Thursday will be the Avon For Dollars Scholarship awards -- we will be part of it this year by giving the first Laura Vivian Santiago Memorial Scholarship. My plan is to make it large enough so that it can continue each year. The community has been so good to us-so this is a good way to give back to those who are not sick but have helped the community. Part of our criteria is that the recipient is a good student that is active is community events, church activities, and good moral character. And then this week end is the Relay for Life. The Rotary club is dedicating their team to Laura. I remember when Laura was first diagnosed and under treatment for a couple of months and Rotary was walking for Laura - (you can see some of these pictures on our web site) Her Uncles and Aunts came up from NJ and we all walked with Laura. I never thought she would not be here now......
The pain of Laura not being here is so bad at times.....I wrote a friend that it is like a tidal wave that hits from no where. Some times I think she is on a trip and I am waiting for her to come back-but of course I know she is in heaven asking the Lord to take care of us. So, thank you for your special love and support.
And as always watch for those pennies!  And thank you to those who have dropped pennies off at the bank! A special thanks to the Bessel children!
Take care and God Bless.
Love,
Joanne

May 12, 2003   
Hello all!
I hope that everyone had a peaceful weekend. We did good-but it was hard at the same time. My day started with Joelle surprising me with a fancy breakfast in bed. She made me perfect home made waffles with a smoothie -- she served it beautifully garnished. She said she kept hearing Laura in her head to be sure to clean up! Then she presented me with a very feminine plant in a beautiful tulip painted pot. I guess while I was checking out some supplies at the store, she and Jolie were busy checking this out for me!
After breakfast we followed Joan and Larry to Lourdes in Litchfield for church. I did good until the memories of me taking Laura here as a baby just to have quiet time in the park and then last time taking Laura in the wheel chair here. The pain over came me and the tears came hard for a brief period. I miss my Mother and ache for my first born.....At the end of the service they had a pretty blessing of Mothers.
After that we went to White flower nursery and bought 3 purple columbine plants call Remembrance. Joelle spotted them and wanted it for our yard. We then went home, did a little yard stuff, had leftovers for super and went into the hot tub. Then Joelle practiced her piano pieces for me. It was as good as the day could be for us without Laura. I remember last year Lucy at CCMC took Laura's picture for Mother's Day. I will cherish that forever. Then Francoise brought a fancy dinner with her family to the hospital so we could have a special meal together. She even brought special China!
This past week was a special week in other ways as well. We started the week being presented by Pine Grove students $910. that was from their Pennies From Heaven. The Hartford Courant gave a report on it. Joelle and I felt so special about it and about being there! The second big item was that Rotary asked me to bring Joelle to the Meeting Friday. All I knew was that they were going to do something special for her. Well, that special was the Paul Harris Award. It is a very special one where you receive a beautiful certificate, medal and pin. Our club gave money to Rotary International Foundation in Joelle's Name. I remember when I was honored with one and feeling so special-so you can imagine how I feel about Joelle!
Nancy Nation gave a beautiful talk about the reasons for Joelle receiving it and Rev. Salin gave the announcement!  Thank you Rotarians!!!! When I get the pictures I will get them to Gene to post!

Have a good week every one and thank you for your prayers, love and support on all levels.
Love,
Mom

April 26,
      Hi Everyone! We are back from Disney! We had some good laughs and memories here! Joelle talked a lot about things that she and Laura did at different times together. We found a penny on the floor by our feet as we were waiting for our plane and a few other odd places in Florida. It made Joelle feel good to know that she is watching over us and is with us!
Because of this, Joelle finally has enough nerve to ride the roller coasters! We made it to all 4 parks plus the water park there called Typhoon Lagoon. It turned out our friend Robin S. was there for the day with some friends, so we all enjoyed the park together. The wave pool was something else!!!
One night we went to the camp ground resort where they had show and dinner done in an old western style. It was fun and uplifting!
The trip back we had first class seats! The first plane we were able to totally recline back and sleep. We had our own personal TV with games etc. The second plane was smaller but we had first class service. Joelle felt so special from the beginning to the end! Yep and I felt special too! Thank you again to this mystery person who did this for us!!!!!
Today Joelle was to play soccer but due to rain it is canceled-so she is catching up on lost sleep!
Mark your calendars if you have time! June 6-7 is Relay For Life here and the Rotary club has decided to again dedicate it to Laura-this year they are naming it Laura Journey
Thank you Erin for posting for us about our Easter together. I hope you enjoy reading how we spent the morning after church on Easter! It is posted on my mail part of this web April 23. She wrote so beautifully...
If you could have seen the 6 of us dancing to Laura's CD! We were doing  some fancy moves!
Take care every one and God Bless.
Love,
Mom

April 17
Hello everyone
       Nature shows funny curve balls on many levels-now the curve ball is the weather fluctuation! Yesterday was heat and today winter jackets!
Sunday we met a wonderful lady name Sue from Special Wishes. She came to visit us and present the give from an unknown person to us to Disney World. With it is hotel, air fare, park passes, and even spending money! What a special thing to do for us. We are so touch that someone would read about Joelle and Laura and do this for us! At first Joelle was feeling odd about it-but after Sue came to the house Joelle feels special!
So, thank you to this person and the organization. What we found out is that Special Wishes is based in and for Connecticut children. There are no paid administrative position-so it is all volunteer-as a result almost every dollar given goes to the child's gift.
Thursday we met Aaron and Maryann Zambrano for dinner. I was happy to be with Maryanne and Joelle was happy to be with Aaron. It is special to watch how Joelle is happy to see Laura's chemo friends and feel so special about them.
It has been quite a month-blood drive, bone marrow drive, Passion Play
all in honor of Laura. This is a hard time of the year-as mentioned before. She was Diagnosed on Easter Sunday 2 yrs ago and the relapsed after April vacation last year.....
The Passion Play was wonderful! They ALL did a wonderful job!
Kevin had the roll of Jesus and as does happen in theater he had the last min. nerves. I told him to picture Laura in his head and she would
be with him! He said he could do that! Well-Kevin did a wonderful job!
I know he would have done a great job any way-but it was nice that we could reach out to her! Joan Gould used Laura's cover design from last year-so it was also special to see her be part of this as she was in Last year's first presentation for St. Anne. Thank you Joan. And, thank you all from St. Anne's who did this.
For those celebrating Pass Over tonight -I wish you a warm spirit for this special time of the year. And for those preparing this week with the
Holy Thursday, Good Friday and Easter. May our celebration of our Risen Lord allow us to rejoice.
May our soldiers be safe and the innocent be protected.
God Bless all of us.
Love,
Mom

April 10
      Wee.....where are the lilies??? I hope they can get out from under the snow soon! Joelle and I are doing OK - and getting ready for the Disney gift!
We went to Bobbies to get our hair cut on Saturday-the first time I have been in a real salon for a year!! Bobby would come to me at the hospital!
While we were there we were honored to see a young woman have Bobby cut about 10 inches off for Locks for Love. They turn this into wigs for Chemo patients.
Bobby donates her service doing this for them. How special that we could thank this woman for doing this! Today is the blood drive at Roaring Brook in honor of Laura.
Joelle is helping there with her friend Devon tonight. I will try to give blood again -
years ago I tried twice and had a pH drop so was told not to try-but after almost 20 years I will try aging tonight! It is so important!
Pennies from heaven is going like crazy! Pine grove told me they have $900. for us to help families! And Heather Kayan gave me $100. from Pennies just from their family! Joelle and I are so pleased.
Saturday is St. Anne's passion play dedicated to Laura. Joelle is happy as she
is enjoying being with her and Laura's friends. It is this Sat. at 7 at the High School.
It is emotional for Erin, Joelle, Joan and myself as last years was her last performance just before relapse....
As for Laura, Joelle and I feel her presence a lot with us. We know and believe she is in Heaven and she is watching over us. She enjoys Kim Savage in the office with Anne-because she always signs for them!!! Her CD comes on in the office -- and it is
scheduled as a random shuffle! The woman Laura is no longer with us-but we have someone else that is very nice.
Nikki's Mom said the pain comes from missing them and being reminded of what the girls have not been able to do before leaving us. This is true.
Well, have to get ready to see if I can give blood! I am so grateful to Gene Gillis for keeping Laura's web site active so that I can keep all these special memories and notes and photos together!
Love,
Mom

March 26,
    Hi all again! Maybe spring is here for a few weeks to stay! I can see most of the yard now! Things have been going......some days better than others.....I have finally started to cry which is part of the trip.......
There are so many things still being done and planned in Laura's honor. I hear the bone marrow drive in Laura's memory at CCMC was a success. I keep praying for a match for a special baby that needs a bone marrow transplant. Laura as well as Joelle and I are so fond of this baby! Who knows if there was someone from that group!
Then Roaring Brook will be having the blood drive. And then there is Pennies From Heaven! We with Thompson Brook's participation and Rotary and friend now have enough for 3 more recipients from our little account! Our friend Aunt Donna went to a Batmitzva for a family friend in NJ last weekend and the young lady did a beautiful Mitva based around Laura's Pennies - Donna is going to post what she did. It was beautiful! But I will tell you it was a success and even at the end they played Laura's song.....
Last Tuesday evening I was working on paper work and Joelle came down to give me a phone call message. She slipped on the steps and really hurt her hip where I needed to get her x-rayed and could not do it in my office alone. She was so bad and in so much pain that our dear Uncle Larry had to stay with Joelle while I drove the car around to take her to CCMC. Needless to say it was like a horrible rerun for me.....but with a good out come. Pushing her in the wheel chair was scary to me....She is still limping if she walks a lot-but doing fine! Saturday my niece Jessica  drove up for the day. We went to the movies and for diner -it was nice having her here!
This Friday is the Students VS Teachers basket ball game at Thompson Brook and I was invited to attend while they make a presentation to me and Joelle.
Today I was there picking up the pennies and it was so special to see the "Pennies From Heaven" sign and "Laura's Legacy" sign up.
Last week we were invited to the middle school's coffee house performance. As always, it was a great job. It brought a lot of special memories of when Laura performed there and next year Joelle will be a student there.
It is a good icebreaker for me to do these things.
We were recently at a surprise birthday party for Aaron Z. Mom Marianne. It was warm being with some of the hemoc families -- but as happy as I was being there, it felt funny too. I felt like I was in such a shell and cannot at times focus off the lessons I have learned by being Laura and Joelle' s Mom.
Gail said the Build a Bear will be having a Large Nikki bear making the circuit of hospitals and stores where they will have a belly for hearts to be purchased for helping children with cancer. So Nikki is on the circuit!!!!! I can imagine little Michelle M. and Laura enjoying this with Nikki while fling around in heaven!
Last Thursday I went to a Chiropractic seminar in Rocky Hill. It was warm seeing people I have not seen in a long time. I belong to a group of lady Chiropractors call Mind Masters-We take turns hosting it and we have agenda's on all aspects of our practices -- from clinical to insurance. These ladies have been SO SO wonderful to me and supportive. They have been supportive and like family to me.
Beth F. Girl Scouts have been delivering us Monday night meals. How warm, supportive, and delicious!
Then there is my Rotary family who every Friday go out of there way to make me feel special about being there! It is warm to watch the Penny bank go around!!!
Then St. Anne's has still been there for us. Confirmation classes delivering meals and Joan Gould always checking on us and making Joelle feel good.
If you want tickets to the Passion Play let me know. It will be performed at the High School on April 12. Joelle is in it again. Laura was so happy last year that she was in it. It was truly her last performance! Joelle is happy to "hang out" with the teens as it makes her feel good too.....
Well, I have to get back to work.
God Bless all of you and may peace be restored in a short time period for our country.
Love,
Mom

March 10

Hi All
    I thought by now it would feel warmer -- but it is not!!!
Well, Joelle and I celebrated our birthdays this past week. It was full of emotions for me. For Joelle as for me-it was difficult not having Laura have her party. And then for my birthday it was hard. Laura and Joelle always made my birthday something special for me to them it was-my special day....I have wonderful memories of the two of them throwing me surprise parties. Even hearing them start the day getting ready to serve me breakfast in bed. They had no money but they made a list and called people to help! Then last year with Francoise help Laura with Joelle's help made me a formal sit down dinner with the good China and all! Laura even made the center piece! I came up from work and found this wonderful present waiting for me!
Joelle talked about how the two would start planning and make a list about what they were going to do for me for my birthday, The twinkle in Joelle's eyes revealed how much she enjoyed that! This year Joelle planned to take me out-we just were not sure where. So since the weather was nice we went to visit
our friends-the Pollens and then continued to Fox Woods where Joelle arranged for us to have dinner at the Chinese restaurant and have them sing Happy Birthday to me. It was different then the past but still full of love. I felt bad for Joelle because I could see the pressure she had on her...She also gave me a beautiful pin that is an angel with rhinestones on it. Gail Giampolo took her shopping at West Farms Mall so that she could get me a present. Also they visited Build A Bear. Joelle said-Mommy Everybody knows Aunt Gail there!!!!
Joelle came home with a beautiful Irish Bear! For those of you who do not know this - Joelle has a passion to be Irish!!!!
The office is slowly getting reorganized for the paper work....and I have a new assistant now -ironically her name is Laura! My dear friend Anne has volunteered to come in on Mondays and help with "special" projects for me.
She has been coming here for a long time and is familiar with things so it was a big help! I have a good deal-she volunteers, brings lunch and flowers and makes me sit and have lunch!!!!!! Her projects are almost over and I will miss this treatment!!!
Joelle had her stitches taken out last Thursday - from her minor gum surgery.
So that is done except for follow up checks on it! Something I needed to do with her a while ago.....
I am Happy that Charlie is home safe now -I heard it was a wonderful adventure! And I so happy that he got to meet up with  our family friend Robin Nemeth in Australia! This week is the dedication of the teen room for Laura at Connecticut Children's. It will be the first time Joelle and I will be there since Laura was there.......When Laura had a small window to return to Connecticut she said she did not want to and wanted to stay in NY -because she loved so many in CT and did not want to feel she could not hang in there any longer;;;
As for Pennies from heaven - I am happy to say that Thompson Brook Elementary School already donated more than $200. worth of Pennies!
So Joelle decided that one recipient will be a family at CT. Children's and another will be a family from Avon. These will be families where a parent has had to stop work due to a sick child. We will give them a $100. in cash-so they will have it in hand to use as needed for whatever-parking, gas, a dinner treat etc. Thank you Thompson Brook!
Roaring Brook is sponsoring a blood drive in Laura's memory-so watch for that as well! This too was important to Laura as well as to me and Joelle.
Well-have to get ready for the office.
Thank you every one for all the special meals and special cards. It means a lot to us.
Love,
Mom

March 1
  Hi all! Today Joelle is 12 years old! It is hard to believe. Today I will make it as special as I can for her! She has been so caring toward me and I am so proud of her.
We had a good time on our R&R. Joelle was hesitant  about leaving but ended up she liked the rest and did not want to leave! It gave us time to smile, remember, and grieve..... At the end we were able to visit the Shrine of Guadeloupe which was an added bonus as She was present in our home and hospitals.
Some times I feel like I have to pretend that the feelings are temporary and they hurt so bad because I know it is not. From what I have read and know-this will never go away just need to learn to deal with each situation differently. It is very different from when my parents left the earth by hitting a tree in a car accident 10 years ago. I thought that was horrible and painful -- but you know someday they will go before you. But not this....
Laura lets us know her presence and that will keep us hopeful that we will see her again in the long future. Our friends and the hem/oc parents have been wonderful to us! And there is always something special being done for us in town and else where! It all represents that we are not alone in the journey and for Joelle particularly I appreciate it.
The article about what Charley is doing in Australia was great in the Avon Life.
Thank you Lisa! And Pennies are showing up every where!
Well Take care and I will update,
Love,
Mom

February 12, 2003
    Hello all! Hope all is staying warm. I hope Joelle does not have school in July with the hard season.....Joelle did a great job at her school assembly talking about her love for Laura and how they came up with "Pennies From Heaven."
Then Charley Hubert's daughter talked about what her Dad is doing for the teen room and us in Australia. They played Laura CD. The children were all so respectful and listened to the program......needless to say my eyes were full of tears. I was so proud of these 2 girls and hurting at the same time for Laura.
March 11 is the official naming of the teen room at CCMC for Laura -
keep posted to Laura's web on how that goes....
Uncle Jimmy will be sending me and Joelle to the mountains in Mexico for
a health rest to get some energy back. This is more for me than Joelle. It will be odd traveling without Laura...it sort of scares me as I am always feeling comfortable in the number 3 as a family unit.......
I had been thinking that it would be nice one day if I could take Joelle to
some place fun for her -- like Disney. And then I received a phone call that
through Special Wishes a very kind lady wants to send us to Disney for a few days since we never got to do Make-A-Wish with Laura! The date has not been set yet. Do you think Laura had any thing to do with this?????
Some times I feel she is so close that I can hear her or hold her hand when I am sleeping.....I miss her so deep so deep. I always say to the girls I love you so deep so deep -- but now I miss so deep so deep as well.
Joelle has a nice time at St. Anne's working on the Passion Play. I think they are getting off to a great start! And, tonight she signed up for spring soccer.
Well, I will end here. Keep an eye on how Charley is doing on
www.travelwithcharley.com
I am working on the thank you card. But if I missed any one-please forgive me as some times I thank them in my mind and heart and then cannot remember if I I wrote the card.
Well, I hope every one has a nice Valentine Day.
Love,
Mom

Jan. 30
   Hi all!
        Well, the time is going-some times so fast that I wonder where the day wondered off to and other times especially at night-it seems so long.....I quasi that is part of the process. Joelle and I are busy worrying about how each other is doing-so that is good --
as when Laura was alive, it still feels like a roller coaster with my emotions.
I panic what will happen when I stop taking care of things related to Laura....
The event in New Jersey was wonderful and emotional. Some friends were there that I saw during the course of Laura's illness and others I have not seen since my parents hit the tree and passed away. It was nice for Joelle see
so many people come out on a cold winter week night for us because of knowing us from "the old neighborhood"
As for CT - our friend Charley leaves soon for Australia to begin his bike ride for Laura and the teen room.  Rotary is trying to locate hosts homes for him as well as our Robin Nemeth in Australia is doing so through the Chiropractors in Australia. And then, at CCMC, at the end of the month they will be putting the sign up dedicating the room for Laura and something about her. They are also having a bone marrow drive for the donor registry and dedicating it to Laura in March.
Our friend Theresa is in Feb. is doing a run in New Orleans and dedicating it to the memories of her son Jake and Laura. We think they are flying around together in heaven.....so they will be pushing Theresa on in New Orleans!
We were in New Orleans for a seminar when Laura was first getting bad-and I was staring to worry that I had to order an MRI because her regular spine ray looked ok......after class we went looking for a dress for the 8 th grade graduation.....we did not find one there but had fun looking just the same.
I am back in the office getting back into the saddle slowly and trying to update myself! The patients are kind and every so often a patient will ask how is Laura - then some tears when I do not expect them and when I think I will have some I can hide it....
Joelle will be 12 on March 1st. -Wow where did the time go? I was pregnant with her when I joined Rotary. Tomorrow, I will try to go to Rotary if my emotions are OK. They love us and we love them!
Father Guerrilla has been keeping an eye on us as is many others from church and the community. Thank you my friends....
Love,
Mom

Jan 18
    Dear Friends,
      Joelle and I are trying to "get it together" and we are doing our best.
We are blessed by all the concerned wishers. The other day I received a poster signed by a Boy Scout troop that meets at Thompson Brook School!
Every day there is a sweet memory......
Today Joelle and I went to Laura's mausoleum. I explained to Laura that she was going for a ride with us too and that this was a marker to honor Laura
and not a place that we were leaving her at.
We brought her CD player, played some music and danced to it in the chapel.
As we did a beautiful ray of sun light came in. We were sure that Laura was dancing and singing with us! I am sure that if someone came in they would think we were disrespectful-but it was anything else but.....Joelle was OK with this and so was I - and that is important!
We are trying to get things in order at home-but the grief and distraction some times makes the time aimlessly pass.....
Joelle has been back to school-however I would get her during her lunch and recess and go to lunch-once we went out and then the rest of the time we ate at home. It was a good safety net for the 2 of us.......
Kathy Marzano is working to get her caught up. Joelle feels like she is OK-so that is good!
Thursday afternoon we plan to attend the fund raiser in NJ that is honoring Laura.....it will be nice to see old NJ friends and also meet new ones.
I know it will be emotional -- but warm.....
Meals are coming to us which is a help when I am trying to get things done and focus on Joelle.
My friend Dr. Karen Shields will be scanning special pictures of Laura to the web master -- so when you are ready take a look at the happy times Laura had....just click on the home page where he has a notice about my pictures.
Thank you Gene and Karen.
Karen's son Odin made a beautiful video of Laura at Sloan Kettering
during the last week of her life. He correlated it to Laura singing.
What a keep sake! Thank you Odin, as I appreciate how hard and emotional that was to do it!
Well, -I best get back to reorganizing!
By the way Pennies from Heaven is taking off!
Love,
Mom

Jan 10
    My dear friends
        It is hard to believe that tomorrow is one week since Laura went to heaven.
The last couple of days her eyes were closed but she responded by noise to us.
One such time was when a patient of my brother's who is a minister prayed for her on the phone. While the phone was by her ear she was praying with him.
Yes, she was ready to see Jesus. Our dear Father Guerrarra anointed her when he visited and she was re anointed by the hospital priest and even received Holy Communion.....
The night before she took her flight she was very anxious and was reaching out to me and Joelle. Joelle was up quickly and for more than 2 hours talked Laura through so many happy journeys they had together. I marveled watching the love between them and I know that that will never ever change.....
Then tired Joelle and I fell asleep. We had 2 beds pushed together-so the 3 of us were together. About 10AM I woke up and noticed that Laura was breathing calmly about the same rate but not making the hard noises. I ordered something for Joelle to eat for when she could get up and then returned calls back to my brother Jim and then to my sister Ramona. Ramona was blocks away only....
An assistant came in while on the phone and told the sleeping Laura that Joelle was sleeping next to her....
When off the phone, I looked up and saw she just stopped breathing.
I quickly put her CD on and told Joelle to wake quickly as Laura was getting her angel wings. We stood there with such emotion and peace at the same time.
We called the nurse and she called the doc. -I was right she was in heaven....
Leave it to Laura to make sure that I had a few winks of sleep and to wait for Ramona to almost be here but to give me and Joelle that special private time to see her pass!
Joelle asked the nurse to take all the tubes out and then proceeded to wash her face and her hands in a loving sister fashion.....she thought the deceased would be scary-but she was not-she was love.....
The hospital was supportive and loving during this hard time. Even one of her nurses came in on her off day to help us prepare to leave. Child life was wonderful with Joelle and gave her presents and special loving attention. Leaving Laura was so hard.....
Prior to Laura's passing the girls talked about how Laura would let people know she was around. Laura told Joelle that she would always be around but when she saw a penny that would be a special sign from Laura. From there, the 3 of us took it to the next level and decided to collect pennies and when we get to
$100. in pennies we will change it for a one hundred dollar bill and give it in an envelope to a parent who had had to stop work due to their child's illness.
We will call it" Laura's Pennies from Heaven". This is something many people are now excited about! You too can do this in honor of Laura for a child in your location.
As for the funeral home -- they too are wonderful and so kind to us. Frank
and his sister just took care of all the details. The wake was nonstop of people from before 4PM and went to after 9 PM. That evening, we had Father start with a prayer and then near the end had Kevin give a beautiful narration about Laura going to heaven, DR Kissel talked about Laura being a Rotarian and doing the 4 way test and her civic commitments such as the teen room at CCMC,  Francoise Miller who was her school home teacher turned family member to us talk about Laura and her special ways,
Joan Gould youth minister  for Laura and her experiences with that, and Rev. Falsey a special family friend said special memories about Laura.
I felt so bad however, because I kept telling people how Kathy Marzano -a
past teacher for both Laura and Joelle was going to talk about them and I forgot
to have her introduced! I felt awful about it-but she mailed me a letter with her special message in it....
The next day we had a large processional to the church. Joelle was so impressed at all the police escorts and so many people.....Her pall bearers were her cousin Greg, John Erocole who prayed and supported us, Craig who helped her make her CD, Larry M, Peter B, and Jim K who are like Uncles to her. Her God parents Aunt Mona and Uncle Phil did readings from the Bible. Then eulogies were done by her sister Joelle, her baby sister type friend Erin Buonome, Cousin type friend Anthony Squillaro, and then by her dear Uncle Jimmy who was with us so often on a regular basis....
The music was beautiful. Ezequiel Menendez always said that he will come from wherever he is to play for the girl's wedding. Well, he honored us by preparing the music program for Laura. He on the organ, Mercedes-his wonderful wife on the piano, A trumpet player,  the women and chamber choir under the direction of Jackie Pruett from Avon High, the Cantors were Carl who is now Joelle's music teacher at school and Bonnie who use to be at St. Anne's and is at the Cathedral and was Laura's first voice teacher and came to her school to give a talk on opera. It was truly beautiful.
Alter servers were youth that knew Laura and then we were blessed to have
both Father McCarthy and Father Guerrarra celebrating the Mass.
Father Victor's homily was wonderful and so personal to Laura. It was beautiful and all knew he had a special relationship with us during our journey.
And then, as an added present the Bishop that confirmed Laura - Bishop
Maccaluso was also on the alter and addressed us and did the final blessing for Laura. I was so proud and pleased for Laura and for the community that I live in.
The procession to the cemetery was also long and then final resting place.
They too were so special to me and Joelle.
When we returned to St. Anne's it was beautiful. They had tables decorated in purple with flowers. Aunt Mona helped with some of the expenses and many donated food from the church and community. We had food that we were able to send to the shelter-which pleased Laura I am sure! Kathryn, you did a great job with the other ladies. Thank you!
So now Joelle and I are home trying to continue and make new ways....and it will be hard.
I feel so anxious at times......and Joelle has described the same......
We are truly honored by all the things every one has done-by thought, prayer, action etc.
We love you and ask that you pray for the children in treatment who are so dear to us and for the families who have angels in heaven. For now, as Anthony said,
we can pray to her instead of for her!
God Bless
Mom and Joelle
 

My Dear Friends,
 Thank you for all your wonderful messages and love. And, thank you Billy Powers from Avon High for helping to contact Faith Hill about Laura! She had a smile on her face that I had not seen in a while when she received a beautiful "Patrick the Pup" stuff dog from her. And then the next day she had a phone call from Faith Hill. All three of us got to talk to her. She is one nice lady who made my girls and me very happy and special! Thank you Billy, Faith Hill, and her manager!
Laura, as is typical for her, is surpassing her 3 more days and is with us for Christmas week! Our Christmas was peaceful. Her Uncle Phil and Aunt Sue came for a visit Christmas Eve and on Christmas Uncle Jimmy and Dawn, Aunt Mona and Steve, and cousin Jessica were all here together. There was a pediatric family Christmas dinner for the families on Christmas Day so Joelle took them down for dinner while Laura and I had ours in her room. Then, as is typical of other years, we watched a couple of videos in Laura's room. The sweetness here is the open love between us.......Joelle said it was the best Christmas because we could express our love to each other so freely......
Two days ago, they were able to transfer her to a special stretcher that changed into a chair. This was a special adventure. I took her off the floor to the lobby with Joelle, Alba and Danny (from Uncle Jimmy's office) helping me! She was sitting there with her eyes closed but taking in the change.......it was a special time!
Laura is incredible - I was told to have my brother come back from his conference because Laura had a few days. He arrived and her kidneys
started clearing urine! Her liver has improved some. The biggest problem is that her legs do not move and she does not feel her legs and her mouth the last couple of days has become very painful so they are increasing one of her anti-viral meds to help therapeutically.
Yes the cancer cells are there.
Yes, we are praying for our miracle-but I realize that it was a miracle that she was here for Christmas!
The other night I had a dream that the three of us were in Puerto Rico on vacation. The hotel gave us a place right on the water because of Laura's legs. The three of us were in the water and oh so happy and free. When it was time to get out she walked!!!! It was as if she was healed in God's water. It was a good dream.........
Love,
Mom

December 18
      Dear Friends,
           Laura is tired to write but has asked me to write to you and ask the following.
If you visit her she wants you to remember she is the same Laura on the inside and well as on the out side and that she wants you to think of her as the Laura you know.  She also wants to tell you that she loves you and is grateful for everything.

DEC. 18

My dear friends,
     Life is very hard for us now....I have Joelle here with us a week early.
The cancer is present and her kidney and liver is not working well.
I look at my baby who is preparing for her next flight and I want to scream, cry and yet be so proud of her. She asked me this morning to not break because I have Joelle and that she loves us.
How can this gift leave us?????Yet -every morning I think-maybe today is the miracle? Please pray for us.
Love,
Mom

December 11,
     Hello everyone!
        Laura is struggling to recover from the second round of chemo.
Her organs have taken a hard hit and not all the cells are gone yet. So we ask that everyone pray for that special miracle. Next week they will do a second bone marrow check on her cells.
I am eager to see Joelle! She is coming up on Thursday this week!
Thank you for all your notes sent to NY, e-mails, making sure things are OK in CT., driving Joelle, your blood and platelets, support spiritually and monetarily, etc., etc., etc.
Love,
Mom

December 2
     Hi all
I hope that you all had a great Thanksgiving. Laura ended up in their "observation" room which is a step down from intensive care. So it was good-she had some monitoring while she got her self back in order...
Her heart is good, Liver and kidney improving. Nausea present but decreasing. The legs are still having problems.
Next week she will have an MRI and bone marrow check and we will know where we are headed with this plan......so I need prayers for good counts, decreased tumor, good bone marrow and spinal tap results, and some WBC. Also she keeps eating her platelets so she needs them too!!!
Joelle had a good time here-child life put her to work setting tables up!
She saw the parade balloons and went out for a late NYC Thai dinner on Wed night, Thurs. she went on the subway and saw Macy's with Aunt Teresa and Uncle George NGO ' daughter Jennifer, Friday she and I walked around here, Sat. we walked to see FAO Swartz and the stores while Laura was doing a project with child life.
On Thanks giving- we did not have our regular dinner-but Aunt Mona, Jessica, and Uncle Jimmy were here for a dinner that the hospital gives for the family. The food was good. We have a lot to be thankful for and also for all the wonderful things people have done for us.
Thank you
Love,
Mom

Nov 22,
Hi everyone!
     We are doing OK-but I am tired and Laura's legs and hips are very painful!
At first they thought she could have infection in the bone but all is OK-but severe inflammation causing severe pain.....Her AVN hip problems..... Plus some neuropathy from the chemo in her legs. Her screaming in pain was breaking me emotionally -- so I had a hard time talking to anyone for a while.
Joelle was a big help there,,,,,
As for Joelle, she finally made it back to Avon Wed. night! Linda and Peter Buonome went on a hunt for Laura's hip and pelvis x-rays and Peter drove here with them and brought Joelle back to Avon. Thank you! If any of you are going to NY and can bring Joelle to me or back-let me know. She usually comes on Friday evening and returns Sunday.
Today Laura is also having blood and platelets-she was excited to have Donna Squillaro 's blood last week and today she is having Tony Squillaro! It was fun to see the bag have "direct donor" written on it! Laura is A+ blood so if any of you want to and can donate blood or platelets when visiting us please let us know!
Laura has enjoyed receiving the cards,etc. mailed to her-it feels good for both of us to read her "fan" mail.
Well,-Laura needs me-so I have to help her. Keep praying!
Love,
Mom

Nov 15,
Hi all,
We are doing OK! It is hard sharing a room....Laura has pain in he hips and legs-
Tomorrow they are doing another full spine MRI - to make sure all is OK
Monday will be a bone marrow check and next round of chemo for 5 days.
Joelle is coming Sat -we miss her....
Take care
Love,
Mom

November 12
    Hi all!
  We are doing OK! Laura is back in for fever - but doing OK. Sat she had another MRI and the tumor appears 50% less in the pelvis!
She is having leg pains -- but possibly due to some invasion on the nerve in the breakdown, So we are very happy!
As for the Leukemia part-she will have a bone marrow test next Monday - but they are hopeful that there will be good decrease. Her next chemo will also start again that day!
SO keep those prayers going!!!!!!
Laura met the educator here -- so she has work to do also!!!!!
Take care
Love,
Mom

November 8
     Hi all from the Ronald McDonald House! We are doing OK- Laura has some mouth soars and nausea-but nothing new to her.... Sat she will have an MRI of the sacral area to keep an eye on that tumor.
There was concern about it getting too close to the foramina in the sacrum.
The people here are very nice and are use to chemo kids!
The volunteers are also wonderful and committed.
Joelle went to court for the day with Aunt Mona-she learned a lot watching her Aunt in action as a Judge. That evening she also got to see the play Annie. Another exciting NJ adventure for her! Now however that she is with us over night -she is already upset about leaving. She is a help to me and a good mood elevator to Laura!
Yesterday we had to go to the clinic unplanned because the patches gave her cuts on her skin. But ended OK. Her counts are still 0 WBC. It is good for Joelle to be part of things here.
Hope some of you were able to check the link on the Ronald McDonald's
facility here. Those caps that Mrs. Dully's daughter was collecting for last year
is part of this place! When the nurse Diane from CCMC gave us 2 bags for Mrs. Dully never did I realize the importance! Thank you to Diane and the Dully family.
  Yesterday we had a wonderful visit from the Friars. They did a beautiful
healing prayer for Laura here in the chapel. What happy people they are! They brought us a beautiful cross blessed by the Pope and some other gifts that we will cherish! This occurred because of Mary Bangs sister who is from NY. so, thanks again!
Well, I best get back up to Laura. Keep the prayers coming and remember when possible to keep Joelle feeling important and special!
Love,
Mom

November 5
    Hi every one!
It hard to believe that more than a week has passed! We are doing OK.
The room feels tight-but tonight our room mate was discharged. She was a lovely person-but it made us feel so cramped! If you saw us at CCMC-we look like we are at a college dorm! But no room here!!!!!
Joelle is here ad I get to hound her on homework - but I really want to say forget it and enjoy the time with us!!!
In a couple of days we may be out patient at the Ronald McDonald house-which will be another transition-but good.
Her ANC is 0-but no blasts in the blood!
Friday she saw Tara - an old CCMC nurse who works in NYC now and Sat. she was also surprised by seeing her primary ccmc nurse Jocelyn. She was so so happy. She also enjoys the calls and notes from the CCMC crew!
Tuesday, the Buonome family is coming-and that will be great as well.
Donna Squillaro has been so helpful with us and with Joelle. Uncle Jimmy also has helped us get settled here. And Joelle now is sleeping at Aunt Mona's-goes to court with her and a police officer takes Joelle in to NYC on his off time.
Well, it is late and I should try to sleep while Laura does and while no noise from another person in the room as well. For those who can-remember to vote!
Love,
Mom

For those who do not know what a Ronald McDonald house is-check here! Many do not know what a wonderful place this can be for us.

Click here: Official Site of the Ronald McDonald House of New York City

October 31,
      Happy Halloween every one! I hear the pumpkins in the front yard look great this year! Hope all are having a great day!
Laura is doing much better on pain control now-which is good.
The travel here was hard on her-but in Laura's style, she tightens
up the belt and goes forward! They have started Laura on a study chemo-and we pray that there is an effect after some rounds.
Every one here is very nice and realize how Laura misses her CCMC family. As we were leaving the house she turned to every one and made an announcement-she said -- "I want you all to know that I am going to make it. End of statement!"
We miss Joelle so much! Friday she will be coming down with Francoise while she is away and Joelle will be here for a week. They are redoing the bone marrow blood tests for the girls on Friday. Each place does their own.
We have been set up with a Ronald McDonald House for our time here. It is quite the place in NYC - so big. The pedi floor is old because it is transition-this is a temporary place until the new floor is redone in a year and a half. Also, Joelle cannot sleep here.
So far Laura has had a CT scan, Muga scan, MRI. Our dear Dr. Hagstrom helped to make the transition smooth for us here and they assured us that they will keep him informed on how we are doing.
Any way-for those who want to contact us-we are at
Memorial Sloan-Ketering Cancer Center
5th floor -room22A
1275 York Ave.
NY,NY 10021

Or, if you are afraid that we will miss the mail, send it to the
Ronald McDonald House of NYC
Santiago -room 309
405 East 73 St.
NY, NY10021

Well, have a good one!
Love,
Mom

October 27
    Hi all. Laura made it to be home for her 15th birthday. Twice we thought we were going to the ER for pain management --but she got under control and had a nice time at home with ice cream cake given to us by Rotary and we had turkey tacos.
As for Joelle-she is the best sister for Laura. She maintains love and dignity for Laura. And Laura, loves and worries about her.
As for our next medical plan - We are going today to Memorial Sloan-Kettering in NYC. I feel that I need to check every option for Laura and Laura still wants to fight even though the pain can get bad at times. It will be harder in the city for us-and more difficult to not see Joelle all the time-but the 3 of us understand that it is something we want to do.
Please keep the prayers and send Laura cards once we are settled there!
Love,
Mom

October 12,
     Hello all! Well, we are home and will be doing a lot of day procedures at the clinic!
Joelle was shocked to see us surprise her Thursday! Of course, we were happy too! On Friday, before clinic and school we made it to Rotary - it was SO SO nice to be there-they are extended family to us and we know they love us too! After breakfast there we took Joelle to school and then for a day at the clinic including platelets.
This weekend she will have her infusions at home and Monday back as a day patient. Wed she will also have another radiation meeting and Thursday to check her bone marrow in the OR. So pray that that is great!
As for her CT scan -- the tumor is definitely smaller-with no additions! But radiation is needed because of their persistency of the cells.
Joelle cannot leave Laura's side at home. She is the best sister Laura could ever have!
Our friend Gene who is the web master is moving to Florida Tuesday and we will miss seeing him. He too is so wonderful to us.... From Florida he will continue doing this for us! When this is over Laura will be able to print all the wonderful messages and journals and keep in paper form! What a gift!
So keep those encouraging messages coming for the girls!
There will be a break on the web-but I will continue to post to him and messages will be forwarded to him until he is in Florida.
Love,
Mom

October 9,
     Hi all from CCMC! Laura is looking good-she is off food by IV and
has slowly started eating again. She stills gets platelets and blood transfusions. For example, late last evening she had the "feeling"
that she need blood-and she did! Today she worked with Francaise
- her teacher. And, she walked a lap around the floor plus had PT!
Her counts are coming back-which is good.
Tomorrow she will have a CT scan -- at about FPM.
So the focused prayer is for an easy test with good results and while the cells come back-only the good ones come back -- no blasts in the marrow or in the blood!
Joelle is doing better-she was home with a cold-but sounds better --
and Amanda did a good job taking care of her at home.
There is a lot going on this weekend for Laura-the youth group at church is having golf in the dark for her Sat. and Sun is the walk for Laura in West Hartford. These events mean a lot and remind us of how supported we are. The last time we came home it was late and rainy and it was wonderful to see what Don Bonnar and Tom Voorhees from Rotary made in the house for us so that there was ramp access for her from the garage. Thank you Tom and Don for that and all the other
things done at home!
Next week Laura will turn 15 on the 20th -- where did the time go?
Hopefully she will be home with good counts! That Monday she will begin a week of radiation...
Well, have to go now!
Love,
Mom

October 2

    Hi All - we are still at the children's Hospital! Laura's fever has not gone up as much as the first night but has returned up and down. And, of course the mouth soars have returned - so the eating has stopped almost! She is uncomfortable and tired of all the re-runs but wants to live and get on with things. We have been reading the Lance Armstrong book together-she loves me reading out loud to her......I really thought we would be here a few days -- but it will be longer, so I had Laura's wheel chair, refrigerator a micro wave for the room brought in today. She does better with this in the room. It is so painful to watch Laura be so uncomfortable and beg for a pain med.  Joelle seems to be doing well. She and Amanda were invited out to dinner last night with Christina Bill-so that must have been fun for them in the middle of the week! Tonight is orientation for the parents at Joelle's school. I feel so bad that I am not there but Laura is not herself today so Francaise will go in my place. I told Joelle that Mrs. Miller will give me all the information! And, that when Laura is home I will ask for a tour with Laura! Laura is also eager to see Joelle's school as well....
Well, thank you every one who is making our life less stressful!
Love,
Mom

September 27
    Hello all -- we got home very late Thurs. Her counts are very low-so no company now! Now we watch for her immunity, fever, or need for platelets or blood, etc. It was nice to be home and not have people in the room at all times!!!
Joelle stayed at the neighbors because Amanda got sick-so Joelle will be shocked this morning to find us home!
As for our little friend Michelle-she is in heaven with NiKki now......
Love,
Joanne

September 25
    Hello all-still at CCMC! Laura's chemo stopped the night before last and on the last day she started with the nausea, vomiting, etc. Her ANC is holding but she has had no lymphocytes in a while so they started her on immuno globulin (IGG) -- as it turned out Laura started with a reaction when they increased the rate. Needless to say, I "acted" calm on the outside. Our friend Aunt Gail was here to get a picture of Laura for a walk that she is doing for Nikki and "crew" in St. Louis and a new friend Linette - who came to talk to us to find out how her foundation can help us. Linette and Gail were very calming for me -- watching Laura go through this reaction. They will do the procedure this afternoon again-but at a slower rate. We want her to be able to fight off viruses!
This after noon Laura will have a CT scan for radiation and simulator markings.
Now, for up beat news-she asked if after the radiation apt. if I could get her Linguini with chicken Franchise! A great sound to a Mother's ears. So it will be delivery food from the Italian restaurant across the street!
I have another favor to ask, a little friend of ours Michelle is at home in hospice. Please keep her and her family in your prayers.
Love,
Joanne

Sept 22,
    Hi all!  Many of you have seen the beautiful article on Joelle and Laura in the Hartford Courant. It came out so nice.....
It was so hard to leave home-and it looked so nice there. So many
neighbors and friends and strangers have been so kind to us keeping things nice there for us!
We are back in the hospital and the chemo plan was changed because
Laura's Bone Marrow test came back as positive for Leukemia again ... so they have both to take care of. As a result of this-radiation will be done on Laura for the lymphoma tumor as well....Laura is doing OK -
just very tired with this chemo treatment. Radiation will be in a few weeks.
Joelle, could not be a better loving sister and so attentive to her
Laura.
Keep us in your prayers.
Love,
Joanne
 

September 17
      Hi all from home still! Tomorrow we will go back - it feels too short!
I had Joelle go through the rest of her winter cloths and we washed every thing...she will of course need to get more pants, boots, snow pants. But the coat is still OK! Then, we washed blankets etc....
It was nice seeing Laura with her teacher-Francoise Miller at home working again!!! She had an acute pain issue in her shoulder and leg last night-but we got it under control without the ER! I feel so bad inside when she hurts that bad...but then she slept very well the rest of the night! It was nice to cuddle up to her and then I would go in and cuddle up next to Joelle.
I beg and pray for her pain to ease away as with the cancer.....
Love,
Mom

September 15,
          Hi all from home!!!!!! It is nice to all be home!!  She is doing well -- just the pain and fatigue. We went to see Joelle's soccer game -- and that was nice. Joelle did a great job! The Squillaro family game up to watch the game and have a short visit with us at the house. It was nice to see them -a long drive for a short visit-but Laura was happy to see them...
Tonight we went to the ER-some pain issues and I was afraid her blood may be low -- but she was pain controlled and went back home!
As for the tumor, it is smaller and definitely not bigger! So Wed. she will have a spinal tap with chemo and bone marrow test and another chemo infusion round. Hopefully this will be the charm!
For those following the Jewish Faith, we hope your 2 special times have been good and peaceful.
Love,
Mom

September 12,
     Good Morning to all! Laura started drinking her contrast at 6:30 this morning-not exactly orange juice! After her scan at 11 AM she will have another PT  session and then home for a few days. The plan is that early next week we will be back in for bone marrow and spinal tap with the start of more chemo. Of course Laura says, and maybe the tumor will be all gone!! It has been almost 5 months since we slept at home! It will probably be strange and wonderful -- even though it will be a short amount of time!
Joelle is so excited! She and Amanda came last night to take some of our stuff home-and after 5 months we have a lot!! We arrived off the air plane to an ambulance with back packs -- and now-so much wonderful stuff!
Say a prayer that the scan shows something positive.
Love,
Mom

September 10,
     Hello all! Today was a quiet day. She has pain in different places -- but looks so much stronger than a month ago. Her counts are coming back up and if she can get the contrast down she will have another contrast CT scan on Thursday - they are talking about sending us home the end of the week for a little while.
The glide stairs are in for her so she will be able to be at home and not stuck in one room! She is happy about knowing that the house is prepared for her.
Joelle is doing fine. Busy now with homework! I miss her so much and am so proud of her!
Tomorrow, is a day that we have all been affected in one way or another. The hospital is having a service for this at lunch time.
Joelle said they are wearing red, white and blue clothing in honor of the day. I pray we all have peace soon on many levels......
God Bless
Mom

Sept 8 -10PM
    Hi again-
          Laura has started with a fever -- so I pray it is a minor thing for
her as she has a very low ANC. On top of this she may be getting irritation in her esophagus -- last time she had this it was so bad that she could not sip water without severe pain.....so far she has minimal mouth sores.....as for bone and muscles -a lot of pain in the legs and back.
Please pray for our miracle for her and the many children we have met through this.
Love,
Mom

September 8
     Hi every one-looks like we are getting some summer weather back!
The last few days have been busy for us. We went home on a pass for a few hours Thursday and Friday. This was so we could see how Laura and I could manage getting in and out of the house and to order an electric chair glider so she can get up the stairs from the family room. This way, when we can be home to stay or visit-things will be ready for her. Oh and we bought a portable ramp to get in and out of the house.
The first night she was in terrible pain when we returned-the next night bad pain but less. Last night we went to a restaurant by the hospital --
by Trinity College - Joelle Linda and Erin went with us. The food was great and their food-chicken, meats and eggs as well are organically grown!
Laura wants to go to Trinity College - so we will have a good dinning place to go to!
She was in discomfort and pain-but did it!
Today her ANC is only 100 - so we were lucky she got out when she did...so hopefully she does not get fever.....
It is so hard to watch her and wonder what effect the chemo has done this time.....
Saturday the youth group did a car wash for us. Joelle participated as well. It had to be the best deal in town. I understand that with the car wash they had free muffins and handed out pretty little round candles in a glass container with a prayer for Laura attached to the lace doily.
The prayer went like this-
"Oh, Holy Lord thank you for our angel Laura Santiago who touched many hearts by being an example for us and remaining strong and faithful in the face of adversity. Please help Laura overcome her cancer by praying for a miracle. Amen."
If as part of your prayers, if you could add this special one-Laura, Joelle and I would love it! Thank you for all who worked or went to the car wash. These events are so help full financially as well as emotionally for us! Thank you again.....
Joelle is very happy with school and has started soccer as well.
She says Amanda can get her up in the morning!!!!!Wow!
Pray that the cancer is leaving as you read this!!!! and that she has minimal side effects and no infections.
God Bless all of you and thank you for being there for all of us on all levels......
Love,
Mom

September 1,
Hi All!
    Hope everyone is having a good Labor Day weekend.
It is hard to believe that we saw Memorial Day, 4th of July, and Labor Day here. So much time in such a short space in our heart.....
Joelle was so happy on Friday because Laura and I surprised her by Laura feeling OK for me to leave with Joelle to take her to school for orientation. Joan Gould stayed with Laura while I left for the hour. Joelle's school is beautiful-it was weird to be "out" of the hospital without something for Laura! Phyllis picked Joelle up and then Joan brought Joelle back before her work started at Hartford Hospital.  It felt great to be able to do this with Joelle. Today Joelle connected with Amanda G.. She was having a good time with her here. I  am so grateful to her and her parents for letting us have her here.
As for Laura-tonight her chemo will stop for this session. She has done well. It was a continuous 6 day infusion plus hydration tonight. The next few days she will know how the side effects will be on her. But for now-for where she has been she looks great! Now the hard part-we will have to wait a few weeks to see what the tumor looks like.....
So -- please pray for no infection, minimal side effects, and a hard boot to the cancer out of her body!
God Bless all of you and again, thank you for all the many things our community family close and far have done for us on many levels.
Mom

August 29,
     hello everyone! We are slowly surfacing......Laura was to start a new chemo on Tuesday night-but ended up being postponed due to a fever. So it started about 5 am on Wednesday. This will be 6 days of continuous infusion of chemo plus steroids. After a few weeks we will check the tumor size and then decide on the follow up chemo treatment. Laura is getting stronger-she has started to eat and is concentrating better....our emotions are high - it does not take much for her or I to break and then there is Joelle-waiting for a chance to kiss or stroke her sister is some way to make it all better. In preparation for this she had a blood test today taken here for Dana Farber and Dr. H gave her a good physical. So, when things look right everything will be ready to move for transplant.
So, please, help Joelle stay healthy and keep her away from too many runny noses at school!
Tomorrow Joelle has orientation at her new brand new school! I spoke with her teacher and he was very nice. Tonight Joelle had a hard time falling to sleep. I am so proud of the relation ship between the 2 girls.....
Hope you all have a good Holiday and for those returning back to school as staff or student -a good year...
But please, continue your prayers for Laura's journey.
God helped her through the lymphoma and the leukemia with side effects that no one thought she could conquer and she did! So, please ask the Almighty to help us finish with this tumor and any cancer and do a successful transplant and a life with minimal pains!
God Bless all of you and be safe this holiday weekend.
Love,
Mom

August 26,
      Hello every one -- and thank you for understanding the quiet time we need now -- to emotionally and physically get strong for the next battle. Right now, Laura is still having bad abdominal pain from the biopsy procedure plus she has developed bad jaw pain with numbness-probably from all the vomiting and dry heaving. She eats some but the jaw is another challenge ... emotionally, we are hanging in there. I watch Joelle stare at Laura to make sure she sees her breath....for fear "something" will happen so fast.
This time this week is good for her being here. She is so good with Laura. I am so proud of them.....
As for our battle - Dr. Hagsrtom is still researching the best step for Laura. We thought we would get our "battle" plans today but it will not be until tomorrow -
Next week Joelle will be home with Amanda taking care of her......as school is on....
When I know what is happening, I will post it. Right now we need to build ourselves up...
Love,
Mom

August 23
       We have just heard sad news.....the lymphoma is now back. We are trying to find out what options are available for us. At this time, please do not call - check with Phyllis Kayan or Joan Moynihan  for information while we try to regroup.

Pray for Laura, Joelle and Me. Thank you
Love,
Joanne

August 20
Well, life is up and down. I had started taking and packing things up here Tuesday when they said her ct scan has to be redone due to the contrast needing to get there better since she vomited a lot of it.
Well, today they got a picture-but it showed "something" in the pelvis. So Boston is on hold until after Thurs. when she will be in the OR and will have a biopsy by lap.  Every one is hoping and praying that it is not lymphoma again but a collection of fluid due to some other reason!
So please pray for this to be nothing so that we can go to Boston next week instead! My stomach and heart hurts....
Love,
Mom

Aug 19
   Hi every one-Laura is learning to come off the continues pain killing meds so that she can stay away over night because Thurs. she and Joelle have to be in Boston for bone marrow transplant exam.
Sunday we went home for a while -- she did well except for the 2 times she fell on the stairs-she has to regain her strength and coordination. Keep focusing your prayers on increase strength, no fever, no relapse, and Boston is ready to take her shortly after the exam!
Again, thank you God and all of you who have prayed!
Love,
Mom

August 17
     Hi all again! Well, Miss Laura has been busy -she has had a cardiac, pulmonary, kidney, bone scan, eye already done for pre transplant. Monday she will have a Ct -scan, hearing, and dental exam. Joelle has to have a dental exam on Monday as well. Then Thursday we have to be in Boston for pre-transplant exam. Yep-you read correctly-BOSTON!!!!!
Then we will return to CT. to hear about the next step.
So for those who do focused prayer, I need the following. No infections for Laura or Joelle. Then Laura needs to stop vomiting and dry heaving so she will hold food down and feel stronger! We are so close!!!!
This morning I woke up in our hospital room and just starred and starred watching my two babies (ALWAYS -MY BABIES) sleep here and thinking how lucky we are that Joelle is a 6 out of 6 match for Laura.
So, this is another hard road for the successful home run-so keep the prayers up for us and the other very sick children here.
Love,
Mom

August 14,
                Remission
       Hi all - I am trying to grasp what has happened-Yep-Laura is in remission-the final report says she has less than 1% blasts in her bone marrow!!!!!!!
So the following tests have to be done for transplant- full cat scan, MRI, pet-scan, kidney function, bone scan, pulmonary function, heart function, eye exam, ear exam.
We still do not know where this will finally take place-they need to find the right place ASAP-before the cancer cells want to start again......
We are so blessed- it is a miracle of God with His direction for her care.
God Bless all of you!
Love,
Mom

August 13,
GOOD NEWS _READ ON!
   Well, Today Laura started with her eyes being dilated for an exam, platelets, low grade fever, and then prep for the OR plus other meds. When we were getting ready to leave Laura and I had private prayer time before moving her to the OR. While in the pre-op, our priest Father Guerra surprised us and showed up in pre-op to give Laura a beautiful blessing and asked for a blessing for the doctors, nurses and staff. Once in the OR I asked the surgeon to ask the oncologist to ask God for direction on this procedure. Afraid he would forget, I asked the office to contact the Oncologist and ask her to say a prayer asking for God's direction for the chemo and the procedure. It turned out that she asked all in the OR to do this as well with her!
Well, this evening I was given a card with a beautiful gift in a gift box - I opened the card not knowing who it was from and the card said BELIEVE on the front of the card and on the inside she wrote-
YOU did it!
      Together!
           Remission! Onward to transplant.
Love,
Dr. G.
       I broke out into the happiest sobbing cry!!!!!!!!!
I felt like I gave birth to Laura - again!
Tonight she is in pain from everything-but has happy news. Every one here is so happy from the chief on down to us!
Tomorrow a final look at the bone marrow will be done and we will know exactly what this will mean. Hopefully, My hero Joelle will have her special place to help soon!
I now pray that it is zero blasts!  We will know what is ahead of us over the next couple days. In the meantime Laura has to stay clear from infection...... and no organ complications. Thank you Almighty God for this and thank you all for your prayers. The road is still a hard one ahead of us, so we need the continuation of your support, prayers and love.
It was only about 8 weeks ago when I was told that Laura had a shot at being made comfortable and be sent home for a short time to live. I was told to have my siblings come to visit while she was able to visit with them here. I only saw life in her and protected, advocated and prayed from the deepest part of my heart.  I know we have had special angels watching over us with special Saints and that our Heavenly Father has guided us and the doctors.
Well, I will try to sleep tonight. I hope Laura gets more comfortable so that she too can enjoy the wonderful news! I long for the time when the 3 of us are home together....
God Bless all of You,
Mom

August 12
   Hi all -- this is a quick up date! Her OR procedure is postponed until Tuesday at 12:45 due to low platelets and low potassium. She needs to be more supported. So, the procedure for tomorrow in the OR will be bone marrow test, cerebral spinal tap, chemo into the intrathecal area of the spinal canal, and removal of her pick line in her arm to a double lumen Hickman in her chest again.
In the early morning she will possibly have more platelets and  her eyes dilated for the ophthalmologist.
So much for now-keep the positive prayers!
Love,
Mom

August 11,
       Hi every one again! Hope all had a good weekend.
As for Laura-her ANC is up, so she can have a bone marrow test tomorrow. Her platelets are still presenting problems. As for her mouth sores-they are disappearing. Tomorrow will tell us what our chances are of future care. So please, keep your prayers especially positive for tomorrow's results....
Again, thank you all for all the many ways that you have shown support to us -- on all levels...
Oh - Friday, Joelle, Laura and I went for a walk for an hour wheel chair escorted. On Saturday we went for a car ride-Laura smiled when her locks of hair went straight up in the wind. Sunday she ate a whole turkey sandwich!
Love,
Mom

August 4,
    Hope all had a good summer weekend!
We had quite the weekend. Remember-last weekend she ended up in intensive care-this weekend the following happened!
Friday night I was up with her every 1 1/2 hours all night, but Sat started good and I told her that if she was up to it maybe she could start her car and put the roof down since the Foley was out and she could sit a short time. To our surprise, my brother Jim showed up with Dawn as did Dr. Colgan from Roaring Brook school. So they and Joelle and myself took Laura down the elevator to her car. She sat in it and put the roof down. My brother showed her some driving techniques in the parking lot! What a happy day! Later she walked a short distance in the hall way. Need less to say by 7pm she was spent and achy etc. Today, she woke up to find out that she has a starting ANC of 28! She is body sore from that as well as the activity and had fever.
Her mouth sores are about to come out. This will be wonderful when it is done. So her prayers are being answered. Now we have to keep her safe with increasing ANC and no blasts in the blood or bone marrow as well as no infections....and remember to say thank you to the Almighty God. Sitting, she has her first shower in months today! She said it felt great!
Joelle has been a great help with me on the weekend.
Tonight, after Joelle left, Laura suddenly woke up startled looking for Joelle. I reminded her that she left and in a loving way Laura said ''Mom, some times I REALLY miss Joelle" I know exactly what she means - I miss her deep in my belly and cherish our "family" quiet time here.
Tonight Laura is uncomfortable sleeping-nausea and fever....her heart beats from 135-170 beats per min. I will sleep when she quiets down.....
Please pray for Laura's mouth sores to finish, no infection, and good ANC with no cancer cells the body!
As well, there are some pretty sick children and young adults on this floor. Please pray for them as well.
Heather and Jennifer Kayan have been great to stay with Joelle this summer at home. However, when collage starts that will end, so please keep an eye out for someone to care and stay with Joelle for a few months. She is enjoying being at home but of course misses our regular family life.
Good night for now
Mom

August 2
      wow August......we got here the end of April.........
We are now back in our own room on the 8th floor. Laura was nervous about leaving the one on one attention -- but she is doing fine...
She has had get off the pain meds gradually but quickly, so she has had some readjustments from that. She bleeds a lot in the urine and vomits some.....
This morning her platelet level was 6! So, blood and platelet transfusions continue.....she still has fevers and a 0 ANC-but cultures are negative!!! Her mouth sores are horrible but starting to shed. Tonight she seems more peaceful and decreased frequency of vomiting etc.
Right now she is in a peaceful sleep!
For those who like to visualize for their prayers-she says, no cancer cells, no mouth sores, no infections, happy life -- but always remember to thank The Lord first before or after asking!
It is 1:30 Am and I have to go get the clothes out of the hospital dryer and get some sleep!
Thank you every one for your kindness and prayers.
Love,
Mom

July 29,
      Well the roller coaster continues.....we had an OK weekend with Joelle arriving Friday night to stay over with us. Laura has been not interactive due to the pain, meds, etc.  I have been uneasy about the pain med. program for her and then on Sunday morning I noticed her left upper body side was tremoring and her lower body as well. Ct of the head was done relatively quickly and to my relief it was fine. So, it was decided that it was the meds and they removed one for nausea that can have this reaction. As the day went on, she looked out of it somewhat, but wanted to be able to go to the cafeteria in a cardiac chair donated by the Rotary Club to pick out something to drink herself!
Then, she wanted me to take her to look at her convertible again! She then went back to our room to rest. A little while later she was taking some mucous out with an aspirator and suddenly vomited and gagged on the vomit. Because she is weak from the pain meds she could not help herself. Plus she has huge chemo sores in her mouth again. Any way, she coded and poor Joelle was so upset.....so we are in intensive care for a while to get things worked out.
When Joelle was leaving, Laura was so pleased because Joelle kissed her good bye as she was leaving to go home and whispered to her that Laura was her best friend and hero. My heart warmed as Laura related this to me. There are so many bitter sweet  experiences with illnesses such as this.
Laura still has a 0 ANC - so we have to be careful of infections. I am also concerned over the blood in the urine and the fevers she has now....
Continue the prayers.
Thank you
Mom

July 22,
     Hello every one from our 8th floor "penthouse" city place at CCMC! Hope those affected by the storm on Friday were OK. Joelle could not make it here Friday night because of it.....As for Laura-her stitches were removed and she still has a very small sore. It is amazing what her body has done......The blasts in her blood are still O!! But the bone marrow is our next issue and that is almost another 2 weeks before we know about that.....Of course her ANC is 0-so her visitation is minimal and with precautions....as for how Laura feels-she feels very sick-still severe dry heaving and vomiting bile. This weekend an x-ray was done to make sure there is no obstruction. She feels so bad and my heart hurts. To keep the air clean, Uncle Phil ordered us a hepa filter that we will need at home. Until CCMC gets one I will have that here ----
Also, Uncle Jim showed up here with a green convertible for Laura! It will be 1 1/2 yr. before she can drive-but he found the car Laura has had her heart set on and so he got it for in. He drove it up from Florida with Dawn. You should have seen her face!!!! Jessica-my niece came to Connecticut to take them back to NJ. So, she had this car as her goal to be that survivor! They decorated it with balloons and a big bow! She thought she was being transported for a cardiac exam and was then given the key by Jim and taken out side with the staff to see the car! Of course, I cannot use it without permission!!! Joelle was so excited for her......
We are in such a weird but loving way of life right now.
I heard that some friends power washed our home this past week. Whom ever did this thank you!!! And of course thank you to everyone. We are so loved...

July 18
   Hi again-it is like a roller coaster-it appears that she stopped showing blood in the urine after her Foley size was changed-which is good. But, she has a central line staph infection-so in the or the live has to come out and a temp pick line put in her arm. It would be great if she had easy blood vessels to tap and put her IV meds in -- but this will be a means to try and clear it up.... She is so achy and tired ----- keep the prayers coming -- wound healing, no infection, cells in blood be good and cells in the bone marrow get correctly redirected so that we can have all ready for a bone marrow transplant!
Love,
Mom

July 18
    Hi all - her blast are possibly not there in her blood!
Now to really keep it away and to have the bone marrow decrease as we wait the next couple of weeks for her cells to come back in good form with no infections in the mean time!
She looks better today -but slept most of the day and night-which was better than the vomiting....
Keep the prayers coming!
Love,
Mom

July 15,
    Hello everyone! The chair Avon -Canton Rotary donated for the department arrived and Laura is proud of it. So, again, thank you Rotarians! Joelle is very much enjoying the daily Avon rec. camp! It is fun and familiar surroundings for her. Thank you, to the town of Avon!
As for Laura-it has been rough some periods of the day -fevers, vomiting, dry heaving, pain in the wound and musculo-skeletal region plus fear, rapid heart beats, etc. However, her spirit is strong and will to live is firm even though there is fear.....
This Chemo, I am happy to say has reduced her blood blasts down to 20% from 90% -this has to stay at 0% and then the bone marrow has to reduce to 5% in order to try and qualify for a bone marrow transplant. So, you all know what to focus on prayer for.....Laura has to have 5% bone marrow cancer cells with no complications!

Thank you all and thank you again for all the many things that are done for me and my daughters.

Oh-her ANC is zero -- so she has no immunity to fight infection now, so I need to keep her surroundings clean here!
Love,
Mom

July 9,
    Hello my friends. As you know we are still in the same spot. The hard news is that Laura's cancer is not improving and she has pain with weakness.
The good part is that she is fighting and praying. Her wound is healing faster than I expected. Her echo for her heart is good but she has a lot of fevers and now low counts. It is time to try a harder chemo which will help her or severely weaken her. It will start tomorrow-Wednesday. Pray for her. I hurt so bad.... and am so proud of her....
Love,
Joanne

July 5,
     Hi all, hope all had a good 4th of July. Joelle was at the beach and a had a nice day. She now is at our home with family friends, for the summer and is happy as well! Of course, the dog is happy too!
Yesterday Laura walked the hall way and back and then SAT by the window watching fire works from this 8th floor-in our room.....she amazes me! During the day she did a couple arts and crafts.
Today she is out of it. She woke up tired from the evening before and this morning she had her bandage changed and a few of the stitches removed. Due to the procedure pain meds and left over pain from handling the area she is sleeping it off.....hopefully tonight we will see the fireworks.
Oh OH, Bad news, Laura has a fever. The doc s examining her. Up And down.....Have to go.
Mom

July 3,
    Hello all, I know it has been a while since I updated, but things have been busy here. Laura did OK in surgery last Thursday-but she has A LOT of stitches and it is very painful. Her cancer is about the same...and contributes to pain. They started her on a single agent chemo to continue to help things and let the wound heal. I am praying that they find the right combination that she can handle to turn these cells around!
Joelle was with us for 3 nights and it felt so good to have the three of us sleeping all together. Joelle was a help here as well. She has grown up so much...They love each other. I would watch her just go over and tenderly kiss Laura a sisterly kiss of love just because.... She went back to the Falsey's home for a couple nights and will be back Wed. for the day and then will spend Thurs. at the beach with Buonome family and here Thursday night for fire works.
Today we were blessed with 4 priests - one is the chaplain here -Fr. Jacob who brought Communion, Then Fr. Russo who does healing services, and our Father Victor who said a prayer before they took the drain out and then visited, and then Fr. Dan who brought a healing handkerchief from the newest Saint-St. Padre Pio. We were very Blessed and Laura was at peace today.... Did you see her editorial in the Hartford Courant about the fact that we have good priests? I am so proud of her!
And for her other civic activities-she was honored today by the Avon-Canton Rotary Club. Art Hayes nominated her for Honorary Rotarian. Tom Voorhees is a past district leader, and he with Art and Sarah Hayes presented Laura the formal induction, plaque, pin. This was due to her work for the teen room here at CCMC. She was very proud and the hospital will do a press release with a picture of this event!
Thank you every one for your cards, gifts, healthy food dropped off for me, presents for the girls, etc.
Please continue with the power of prayer...

Love,
Joanne

June 24,
   Hello all,
We are having a difficult couple of days. Her whole body is in pain and she is back in bed. One of the chemos is part of this. As well, the packing of the wound is painful and so there is terrific fear of it. Last night she had a low fever-which broke her. She is so worn out. She will have a red blood cell transfusion and I hope that will pick up her energy......her counts are starting to drop again so that may alter her surgery procedure.....so keep those prayers going. She just found out that I may have to go back to a cot to sleep because they may need the extra bed that they allowed us to use. That also upset her very much because it is the way we can sleep and snuggle without me moving the air mattress on her bed. This made her very sad - but I told her that we may borrow one back soon ----
Love,
Mom

June 21
    Hope all have a good first day of summer! And for those you who graduated -- congratulations! We heard MS Pruett received the Avon teacher of the year award. We are so happy to hear that. Ms. Pruett -if you read this -a big hug from us!  Also, Laura received one of the first "Nikki Bears" from Build a Bear Company. They have a beautiful purple bear coming out with a pin to honor Nikki and remind people about childhood cancer. One dollar of each bear will go to a Childhood Cancer Organization. This will be sold in January.
As for Laura - she has every one's admiration here. We exercise in bed, walk a little more in the hall, practice meditation, breathing and visualization and most of all -- prayer. Her wound is actually healing-enough that next Thurs. surgery will try to close the wound. I never expected that this early.....As for oncology, her counts are holding and she is tolerating the chemo program Dr. Hagstrom picked out for her.
Next week we will know how the leukemia is responding for her. So, if you pray better by request or visualization-this is what Laura is asking of The Almighty - Pain go away, no infection, wound healing and full remission.
As for Joelle-we miss her so much.....this week she is with the Falsey family. I am working on getting the right person to stay in our home with her. It will be nicer for her that way....
As for me, well our friend Bobby who is our hairdresser showed up and did my hair! Of course, in the middle of that, I had visitors that stopped by to see me! Thank you Bobby -I feel better! Thank you also to every one that has been doing things for us on all levels -spiritually, errands, my office and house items etc.
Thank you for loving and caring about us so much. It feeds our drive....
Love,
Mom

June 17,
Hi all,
I hope that all who celebrated Father's Day yesterday enjoyed it!
My sister Ramona, niece Jessica, brother Phil and Sister in law Sue came up this weekend. They watched Joelle play her last game of the season in soccer. She was happy for the fans and to spend another weekend in her home too with her dog.
The O'connors have been wonderful to Joelle and have taken her in like family. And I will always be so grateful ......
As for Laura, every one is amazed at her strength to fight. This morning she got out of bed and slowly walked to the door way, and then this afternoon she doubled the distance. The wound is trying to heal. No bad reaction so far from the altered chemo.
She asks that you continue with your prayers and good thoughts. Please pray for no infections, wound healing and leukemia cells leaving from the chemo she can handle.
Love ,
Mom

June 14,
Hello all.
Laura started another set of chemo last night in the hope that the ones chosen will let the wound heal and buy us healing time. She is very tired-but as the wound pain improves she will hopefully be more comfortable. Prayers are being said every where and that is so important to us.....This weekend Joelle will be at home with her Aunt Mona-so Joelle can again be in her own home for another weekend.
Love,
Mom

June 12
Dear friends, 
This is a difficult time right now. Laura's cancer is resistant to the chemo that she had. On top of that she had surgery on the burn wounds. If she has a stronger chemo it will drop her counts and she will not be able to heal the wound.
Laura has decided to not give-up and will continue to fight this. Please, continue to keep us in your prayers.
Love,
Mom

Click here to see messages from Joanne prior to April 2002.