If you had a chance to visit with Sydni, Cathy and/or Stephen and would like to share with us please email me and I'll post it for you.
TIMELINE: 1/22/05 - 1/26/05 - 1/28/05 - 1/29/05 - 1/30/05 - 2/2/05 - 2/3/05 - 2/5/05 - 2/12/05 - 2/15/05 - 3/21/05 - 3/23/05
Sydni,
I finally had the chance to visit you on Wednesday, March 23rd, and even help you for a few minutes while I was at it. When you were laying there as calm and collected as can be, you looked like such a little angel! You looked so precious! It was heart-warming to see you in such a state, even as you continue to fight the good fight.
I remember as I looked at you and thought about what you're going through, I thought of my 4 1/2 year-old niece, who I love to pieces. At one point I asked myself: if this was her, or even a daughter of my own, what kind of an emotional basket case would I be? Here I am from a relative distance, continually touched deeply by this as I follow your brave battle. You've given us every reason to think you will make it through this - I know I'm pulling for you knowing that my prayers and those of everyone else will be answered. Friends that I share your story with are as touched as I am by it, and they're all rooting for you as well.
We are all with you in this. Happy Easter to you and the entire family.
Love and prayers,
Phil Kasiecki
3/21/05
Dear Sydni,
Every time I visit, you look so much better. This time was no exception except that you did for a little time look uncomfortable as you were stretching in the most unusual position. As your Dad mentioned in his diary, it is in response to the chemo, I on the otherhand think it's an indication that you are going to be a gymnist. It's also great that most times I visit I also have a chance to see your great sister Tari who loves you so much. Continue the fight, any discomfort now will have no lasting impact on you other than its intended impact on any remaining cancer itself.Let nothing disturb you;
nothing frighten you.
All things are passing.
God never changes.
Patience
obtains all things.
Nothing
is wanting to him
who posesses God.
God alone suffices.
"Saint Teresa's prayer" Your sisters namesake.
Lovingly,
Your uncle and godfather Ray.
Dearest Sydni, I’m playing catch-up with my visits, but I know you understand! On Tuesday (2/15) your mother called and asked if I could come over to Children’s. She had you and your sister and so much going on, so I left work and had a grand time with Tari in the resource center, the playroom, and the famous Children’s cafeteria for dinner. Some of the time your mother was with us and some of the time she had private time with you. Then your mom drove Tari home and it was just you and me. Unfortunately, I didn’t have that tape I promised you so I sang to you (you graciously didn’t laugh at my attempt), monitored you, and listened closely to any medical personnel who arrived.You were transferred to Spaulding, and our next special visit (2/19-2/20) started on Saturday afternoon and lasted overnight until mid Sunday morning, about 11:15 am. I got to meet so many special people who are working with you: Theresa (otherwise known as St. Theresa), Kathy, Bill, and Michelle are the ones I can recall. It was all in all a good day and evening until about 3:30 am when you awakened and had some difficulty. We stroked your forehead, did all of the things that you like, and Bill cradled you in his arms briefly. You would rest and quiet down for awhile, but you never got back to sleep until about 7:30 am. The labs and x-rays were normal. You do get some serious gas which is painful, so the nurses showed me what they do to try to counteract that. It was so hard hearing you cry and not knowing exactly what you needed. You tricked us one time when you seemed to be asleep, and one-by-one we stopped doing various sundry soothing techniques. The minute the last one stopped, your eyes opened wide and I could imagine you saying something like “That felt so good, don’t stop.” During the calmer morning hours, you did finally get to hear the tape your sister and I made especially for you.
I just received an e-mail from my friend Edna Lezotte who belongs to many prayer groups and is a chaplain at St. Elizabeth’s. So, in addition to all the love, and prayers, and blessed rosaries, and prayer groups, and well wishes, and a special prayer shawl, you are now in several more prayer groups.
Lots of hugs and kisses Sweetpea
Love Gramma J
Hi Sydni,
What a night we had on Saturday!! Walking with you for a couple of hours was a joy. I guess we walked about seven miles up and down that corridor. Best seven miles I have ever tread. Although we were friends by association before Saturday, I now consider you a permanent part of my heart, and all of the joy and sorrow that exists there. Your situation has reminded me, and taught me some new things about appreciation for the little and big things in life. Although you are little now, your impact has been huge. Nancy and I have talked non-stop about how lucky we were to have the opportunity to hang-out and care for you for a bit. Stay strong, my little friend. Just as I enjoyed supporting your head as we walked, I look forward to holding your hand during a walk in the future. Everyone in my family prays for you daily (my parents want news constantly) and I hope that tomorrow is a better day. Love, Dave
Hi Sydni,
On Saturday night, February 12th, Dave and I were lucky enough to watch over you for the evening. I was pleasantly surprised by how much stronger and healthier you looked from my first visit (2 weeks ago) when you were at Children's Hospital. The swelling in your head had gone down significantly and your stitches have nearly faded away. You are truly a beautiful little girl. I was not able to hold you last time I visited as you were hooked up to all kinds of monitoring devices. On this visit, when I held you in my arms and looked into your eyes, I was filled with a feeling of pure joy and amazement. You are such a special baby and have taught all of us to be thankful for every minute of everyday. I hope to be able to spend much more time with you as you grow. I hope and pray that you have a miraculous recovery. Love always - Nancy
Dearest Sydni, a lovely visit with you on Saturday doing things like reading to you, praying to you the special prayers of great grandmother to the Lady of Perpetual Help, playing tapes, folding laundry, and greeting your parent’s friends when they arrived. Love you lots Sydni and praying for your health/recovery. GrammaJ.
Dearest Sydni,
On Saturday (2/5/05), we had a very special nice long visit at Spaulding. I didn’t have your sister Tari with me today. It was just you and me babe. And what did we do during this visit? Well, let’s see: you had a good lunch, burped, slept, pooped, allowed rehab to exercise and re-position you, permitted one of the docs to check on you, and graciously allowed me to hold you and sing to you. I’m thinking that one of your favorite songs is Frosty the Snowman, which happens to be one of your sister’s. You are the best dressed baby at Spaulding. You also have a room decorated by your mother that is so special/meaningful it makes me think HGTV is overrated! Everyone adores you-even at Spaulding where they are just getting to know you and your winning ways. It was after your dinner bottle that things sadly went amiss. With that, you are being assessed ongoingly as to what and how much your little tummy can tolerate. Take care sweetpie.
We love you. Gramma J.
Dearest Sydni,
My visits with you have each been so different and so hopeful as I see the progress my little sweetpea has made. This past Saturday you were resting comfortably, and I hope you like the onesies I brought you. Your sister proudly showed me the paintings she made for you. She loves you so much!
Tari has been spending weekends with me, but this time when I brought her it was so hard to say goodbye to you even though I knew I would see you on Sunday. When I brought Tari back to Children's on Sunday we had an especially nice visit. I got to hold you for the first time since your troubles began. I didn't want to let go of you, but then I saw where your mommy put your great grandmother Mary's rosary beads on the crib. It brought a smile to my face. You and she were born in November, and those topaz rosary beads were blessed and were very special to her. May they bring you peace and health.
I can hardly wait to bring you a special tape that Tari and I started for you. I've already given your mother a hint. Know and feel the love, prayers, and hope that are with you always. You are never alone. Bye for now!
Love, Gramma J.February 3
Dear little Sydni,
Every time I see your pretty face, you look so much better. You are so strong, I have no doubt that you will be able to cope with the upcoming chemo. Look how far you have already come in so short a time: the surgery itself, the excessive bleeding, the vision problems, and the apparent paralysis of your legs. You have come through all of this so far with flying colors.
As your Godfather I have a request for you, "A request that you can't refuse": please get better each and every day.
Lots of love,
Uncle Ray
Sydni,
We visited you on Wed, February 2nd and we were so lucky and thrilled to see you so comfortable in your mothers arms drinking out of the bottle for the first time since you entered the hospital. We are amazed only a few weeks ago you went through a very dramatic and trying time that most of us could not ever imagine. As you sat there we were amazed how great you looked and the look in your eyes said it all (LOOK AT ME I'M EATING!)
Before we left to say good bye I walked over to you as were just put down to go to bed and I had to hold out my hand and see your reaction. After a brief second, I was so blessed to have your little fingers grab my thumb I almost broke down. Then I looked up and looked at your mother while she talked to Danielle and realized how special you are and how loving your mother, father, and all of your extended family are with all the writings of good wishes on the wall. With that I felt a calm presence come over me when I left the room knowing you were checking out of Children's to go into Spaulding for rehab tomorrow, and that you are going to fight like no other. You are a tough cookie Sydni, tougher than anybody I ever met!
Love Ya!
Peter and Danielle Lucido
I was fortunate to be able to have a visit with Cathy and Sydni this past Sunday. I have been friends with Cathy for about two years now. We met in a Spinning class and then started training together for the 2003 Boston Marathon through the L Street Running club here in South Boston where we both live. It was Cathy's second marathon and my first. We ran many miles together and became very good friends (as that's an easy thing to do with Cathy). She used to regale me with stories during the long and painful miles as I huffed and puffed along side. Never once did she doubt my ability to finish a training run OR, for that matter, the marathon. I consider her friendship a gift I was given and will always treasure. Now that Stephen has been converted into a marathoner I have also gotten a chance to know him better as well - another benefit to running! Stephen's diary has been an inspiration to all that read it and Cathy's devotion to Sydni's daily care is equally inspirational.
We had such a nice visit just sitting and talking as Sydni slept like an angel the whole time. The past two weeks have been very difficult for everyone who knows them and it was so good to be able to see my friend in person, give her a hug and sit and talk. At one point she mentioned that she was hoping they'd get to keep their private room (which was completely decked out with well wishes, prayers from the website and her own beautiful artwork) but since Sydni was one of the most medically stable children on the floor - she said they could get bumped at any time!
That certainly made for a bittersweet moment, to think about all the other children whose conditions could have been considered more serious!! As a mom your biggest wish for your children is health and happiness. Those are gifts we all need to treasure more closely every day. I feel in my heart that they will get through this and Sydni will thrive - how could she not surrounded by all that love!
Connie Mooney
Dear Stephen and Cathy,
What a beautiful little angel God has given you. She is truly a fighter and remains strong because of all the love you both give her every day never leaving her side. Stay Strong! Your family loves you and is here for you always. There are so many wonderful people who truly care, pray and continue to keep the faith for Sydni. God, continue to bless and watch over our little Sydni.
Love, Carolyn
January 29
Today was a better day...I had a better feeling about everything. My mother had called me in the morning about our visit on the 28th because we both were very upset and depressed with what we had just heard last night. I honestly started thinking negative. She told me that if we think negative we are giving up our Faith and Hope and Love of God. And then after visiting Sydni last night I came home to two emails from my cousins Tracey and Alecia...both with encouraging words. Not only does the prayers give us strength in this but seeing others that care and the words of wisdom they share. They sent the emails at the right time that 's for sure.
As far as my visit with Sydni....it was a complete different day from yesterday. Very positive. I couldn't believe when I saw her that she was not favoring the left side with her eyes. She had more control than ever. I even put my fingers in front of her and she followed them to the right which she has not done the day before when I did that. She was more vocal today too. I'll just leave it as it was a good day.
lots of love, paula
Today I had the honor of spending time with Sydni, while Cathy and Steve met with Neurology and Oncology. As I held Sydni, she fell asleep and had a great nap! I was amazed at how peaceful she was as she slept. I could not take my eyes off her beautiful face, as I prayed for this precious and innocent baby in my arms.
I am proud to be friends of Cathy and Stephen. Today, I witnessed their courage and bravery as they prepared to meet the doctors. As I quietly spoke with Cathy upon their return, I was moved in a way I have never experienced. She was the personification of grace and courage in the face of what anyone would consider to be his/her worst nightmare. Her faith was inspiring, her inner strength - remarkable.
Cathy and Steve - Thank you for the opportunity to spend time with Sydni. What a blessing it was for me to share in this difficult day with you.
Please know that Paul and I here for you.
Love,
MicheleJanuary 28
Dear Cathy and Stephen,
As I held our beautiful angel today, I know the power of prayer will get Syndi through the next few weeks. Prayers and Novenas are being said all over the United States and Ireland for her. Fr. Micheal (Dublin, Ireland) is remembering all of you in his prayers at mass. Dad and I are here for all of you day and night. We love all of you very much.
Love and prayers
Mom and Dad
January 28
My mother, Tari and I went to see Sydni today and I have to say it was harder than I thought. ICU and 9 North - two completely different wards - ICU being more critical obvisiously yet 9 North...I can't even describe the feeling. Walking down the hallway to Syndi's room, passing room after room, seeing and knowing there are other children just as sick or sicker than Sydni. It's a hard thing to swallow and I don't think I'll ever forget that walk. Well as we stepped into the room Cathy, Stephen, their friend Michele and Sr. Carlotta were holding hands praying over Sydni. It was very quiet until, of course, Tari ran over to her mom. I told her that they are praying and we need to listen right now.
I want to believe that these prayers are working...I want to believe it. Stephen filled us in on the meeting today and it's not the news I wanted to hear yet deep down I think I knew that was what I was going to hear. I'll leave that up to Stephen's diary to tell you. I'll probably mess it up anyway. But I can tell you this...this whole thing SUCKS! I look at Sydni and I can't understand why this is happening. She is a fighter but it's so hard to see her like this and not knowing what I can do to fix it. Even the smallest sneeze she had while I was there could not finish without a cry which filled my eyes up and broke my heart. This should not be happening. I just tell people to pray because I think that is all we can do. So if you can just fit one more extra prayer in a day for her...and pray for my family to have strength through this because it truly is hard. We try so hard to be strong for Cathy, Stephen and Tari. Why can't we have a miracle?????????
Also I have to tell you that Cathy has printed out every page on the website and taped it to the wall in Sydni's room. Cathy really appreciates all the well wishes written in the guestbook and reads them over and over and over. It really inspires Cathy seeing how much everyone cares about Sydni.
love to all, Paula
I visited Sydni on Wednesday, January 26th and I was amazed at how peaceful the "little fighter" seemed. During the 90 or so minutes I was there, she seemed to complain only once. A few times she seemed to respond and look my way – on her right side – as if to say "yup, I know you’re there". I know she is fighting, you can tell. After all she has been through, I’m amazed. She even opened her hands and I thought "wow!" Sydni is very special.
Although Sydni has a struggle ahead, in the midst of her battle, I got a sense of serenity in her room. Steve, Cathy and the doctors have created a calming presence led by Sydni herself. I know that there must be many trying moments, but my visit was not what I expected. My experience in visits of family or friends in sickness or injury, has always felt very tense. I did not have that feeling with Sydni, she actually made me feel better. It is wonderful that she has her own room and the ability to create an influence on its surroundings. I pray that the scene I witnessed will continue to heal and improve the recovery a very special little girl. God be with you.
Errol
January 26, 2005
I had the profound experience of visiting Sydni today in her new location at Children's Hospital. After inquiring with the receptionist at the ICU, I learned that she had been moved to a resident patient room. I immediately took that as a wonderful sign that the Lord is hearing everyone's prayers and working miracles through this tiny life.
I finally found the right room and, as expected, found Cathy and Steve continuing their 'round-the-clock vigil at her bedside. What I saw next I found truly remarkable. In that small hospital bed I saw a beautiful example of the precious gift of life that God gives to all of us. Words can't begin to describe how amazing it was to see this delicate creature of God, who has undergone such a traumatic experience, with an incredible look of peace on her face. In spite of all the tubes and medical equipment attached to her, in spite of the still pronounced external signs of the serious operation that she endured, Sydni had such an aura of calm about her. She was flexing her fingers and moving her legs and making the most contented 'baby sounds'...almost as if she was speaking to all of us around her. As I looked at her I couldn't help but think about the amazing skill and technique that the surgeons at the hospital have been blessed with that would enable them to treat such a delicate life.
As we all continue to pray for Sydni and Steve and Cathy and Tari, please pray, too for those who are responsible for treating her...the doctors and nurses and other medical professionals that God may continue to use them as His means of caring for the life He has created.
"Give thanks to the Lord for He is good, His mercy endures forever!"
David Flanagan
When I first held Sydni at Christmas, I was so impressed at her alertness and directness--she looked right at me. She also seemed to be so strong, physically, for being only six weeks old!
Then, seeing her in the hospital four weeks later, my reaction was overwhelming. Seeing all those tubes coming out of her little body was very difficult. But then, when I read a storybook to her and she reacted by trying to open her eyes, I was really touched. Whats more, any time Paula or I touched her, she reacted. That gave me lots of hope for her. Also, I was happy to see her little arms raise up when the nurse was cleaning her suction tubes. She did not like that!!
She is so little and has had to put up with so much in her short lifetime. I truly hope and pray that she will be the little girl she was meant to be before all this happened to her.
I know that Sydni will always have a very special corner of my heart for the rest of her life.
Love,
Aunt Patricia
Saturday, January 22, 2005
I was in the hospital yesterday with Aunt Patricia while Stephen and Cathy spent some time with Tari. To me it was a great day. Despite all the tubes and wires all over her she looks beautiful. While my Aunt read a book to her I watched as Sydni opened her eyes. I hadn't seen that before since she had the surgery so I couldn't have been more happy. To me she seemed like a perfect baby. But then when reality hits, I know that she has a long road ahead of her. She is still having seizure activity. We can't see it but the monitors tell us that she is. Stephen told me that other night that the doctors told him that she has brain damage on her left frontal lobe. Not sure if it was from the seizure or from the surgery. I'll have to look that up to see what that will effect as far as her ability down the road. Stephen also told me that the tumor results came back and it is cancerous. You wonder how this happens to such a small baby?? I guess this is a very rare form of cancer. I can't remember the name but I'm sure when Stephen gets me the updates he will let you know. I believe in miracles and the power of prayer. So please keep praying for her. - love to all, Paula