History

Wednesday, February 20, 2008 6:17 AM CST

It's hard to believe it's been four years since Scott's death. In some ways it doesn't feel like it's been four years since we were together as a family, but in other ways, it is a lifetime ago.

I wanted to share some of my favorite memories of Scott today, in no particular order.....

Your first pair of jeans, which your Aunt Eleanor and Uncle Don bought you; you were two months old, and so cute.

Pleading with me to re-read "Love You Forever" one more time, oblivious to the tears streaming down my face.

Your first crush, on Meaghan Connell, at a party at John's house. I think you were about 4 years old, and oh, how you flirted with her!

How you could make fun out of the simplest things, like stacking the cat food cans until they were as tall as you.

Singing Bon Jovi with abandon, and "You Give Love a Bad Name" became "you give love a bam bane".

Your love of animals, every creature, your natural curiousity and joy at everything in nature.

How you loved the blue boots from Lands End. You wore all them all the time, not just when it was raining: riding your bike with your brother, exploring the neighborhood.

How you spent most of the evening at the St. Matthias fair pushing your stoller around the place, you were 23 months old, and I was (very) pregnant with Stan Michael.

Your first haircut with Karen, I was taking pictures and crying, and you couldn't figure out what all the fuss was about.

Your father and son crewcuts, especially the Memorial Day weekend that you and your dad convinced Stan Michael to join you two, I had just gotten his (long) hair cut, and you guys shaved it all off!

Your first day of Kindgergarten. I was so sad, and you just took a seat, backpack still on your back, like no problem Mom, you can go now.

The day we gave you your own "big boy room". You were so excited and thrilled, I remember you moving from one thing to another, and then jumping into your toddler bed, full of joy. I was worried that you would feel the loss of your nursery, but like so many things, you made it easy.

Thank you to my precious son for the beautiful memories I carry in my heart. Thank you to the people who continue to love and support us on our journey without you.

Peace, love and courage,
Romelle, Stan and Stan Michael

Friday, June 22, 2007 1:50 PM CDT

Happy Birthday Scott – Forever 7, now 11 in Heaven

Today is a day much like the day Scott was born, a beautiful summer day. As I think back to the seven birthday parties Scott had, I would say that his favorite was when The Lizard Guys came to the house. "Silly Billy" brought snakes, bugs, and a giant frog the size of a dinner plate. That was his sixth birthday party, right after Scott finished Kindergarten.

With the two boys birthdays a day apart, there was always lots of celebrating in June. We have continued the tradition, and took an ice cream birthday cake to Scott’s grave today. Scott’s Pop Pop, who died in December 2006, is buried right by Scott, so we left him a piece of birthday cake too. (Scott got the whole cake, minus the few pieces we ate.)

I know today is supposed to be a day of celebration: the day that Scott came into our lives, the day that I became a mother for the first time. I am trying hard, but I am just not there yet.

My friend Susan (Timmy’s mom) says they have the best birthday parties in Heaven. I hope Scott and Timmy are having a blast.

We love him, we miss him, life will never be the same…
Romelle, Stan and Stan Michael

Sunday, May 13, 2007 10:25 AM CDT

Happy Mother's Day

I am trying to remember previous Mother's Days and special memories of Scott. My first Mother's Day, May 1997, was when Scott was almost 11 months old. I remember we had the whole family over for a barbeque. As I was rushing around getting ready, I ran into my bedroom and was struck by the overwhelming scent of Shalimar, my mother's favorite perfume. It was my first "visit" from my mother since becoming a mother myself. My mother had died ten years earlier, in 1987, and had always wanted to be a grandmother. Scott was her first grandchild, and I was surprised it took so long to hear from her, but was so pleased that she picked Mother's Day to say hello.

Three years ago, I celebrated my first Mother's Day without my son Scott. Our dear friends Mary Ellen, Rose and Larry were generous enough to let us use their Delaware shore house for the weekend. It was a difficult time for our family, less than three months after Scott's death. I went to the spa, and we had two days of family time, which is such a luxury in the busy world we live in today.

Today, in her son's CaringBridge, my friend Lisa (Jacob's mom) reflected on the cards she'd received from Jacob on previous Mother's Days. It was such a beautiful and brave thing to do; perhaps I will feel the courage to do that myself someday.

When I miss my son as much as I do today, I try to remind myself of the positives. He died believing in Santa Claus; to have left the world with such innocence is not a bad thing. And I will always remember the night that I was getting Scott ready for bed when he was about three years old, and he looked at me, very serious, and told me, "I don't want you to die Mommy." I reassured him that that was a long time from now. My son did not grow up and experience my death. By dying so young, he was spared from much of the pain and heartache that is part of life.

I had only seven Mother's Days with Scott, and this is already my fourth one with him; it is hard to believe, and it is harder this year for me than it has ever been.

Wishing all of the mothers I know a happy mother's day, and for the mothers who can't have a happy mother's day anymore, I wish you peace, and the feeling of your child's loving arms around you, today and everyday.

Love, hope, peace and courage...
Romelle

Tuesday, February 20, 2007 10:31 PM CST

Dearest Friends and Family,

It is so hard to believe that three years have passed. It feels like forever, and in some ways it feels like just yesterday that we were a family of four.

Stan Michael was in Kindergarten then, and now he is in third grade; his brother Scott never completed second grade.

Stan is embarking on a new business; Outdoor Operations Corp. was established in December 2006. Stan is substitute teaching in our school district, and worked today at Scott and Stan Michael's school, MacAfee Road School

I am in my second semester of Graduate School, working towards my Masters in Social Work. I spent the day studying and doing homework.

In the past five months, we have buried both of our fathers, who join our son in eternal peace.

Stan and I have are blessed with a circle of friends which includes many of our oldest, dearest friends, some newer friendships, and a large circle of bereaved parents, the only people who truly understand our journey.

We have learned how truly fragile human life is, how precious everyday is, and that the most important lessons we can learn in life are to forgive and to love.

We wish for everyone peace, love and courage,
Stan, Romelle, Stan Michael and Scott, in spirit

Thursday, June 22, 2006 11:26 AM CDT

Happy Birthday to my precious boy! It's so hard to believe that it's our 3rd birhtday without you here, tomorrow your brother Stan Michael will be 8 years old. He says he's still the younger brother, because you are now 10. When we sing to you and eat your birthday cake, I just want to feel you near. We love you, we miss you; life will never be the same.

The Broken Chain

We little knew that morning, that God
was going to call your name.
In life we loved you dearly,
in death we do the same.
It broke our hearts to lose you,
you did not go alone;
For part of us went with you
the day God called you home.
You left us peaceful memories,
your love is still our guide;
and though we cannot see you,
you are always at our side.
Our family chain is broken,
and nothing seems the same;
but as God calls us one by one,
the Chain will link again.

-Author Unknown-

Happy Birthday in Heaven to my precious son. I will hold you close until we meet again, with much love...

Your Mommy

Friday, September 9, 2005 8:19 AM CDT

It's been a long but really fast summer. It's hard to believe we're already half way through our second year without our precious Scott. In many ways we are finding the second year harder than the first. In the first year you are numb, now the numbness has lifted and we are living our lives without Scott. His absence is a part of everything we do.

Stan Michael has had some tough moments this summer, where he was surrounded by family or our friend's children, and he feels his brother's absence so much. Everyone else's brother or sister is there, how come not his? How can Stan and I as parents even begin to explain something we can't understand ourselves? We were at a friend's home Labor Day weekend, in the midst of a wonderful party and a beautiful day when it hit Stan Michael. His Dad took him inside and they had a good cry together. Next week he will start 2nd grade. He never got to ride the bus with his brother, or walk into school together. I'm worried about his transition back into school after such a long summer break (100 days), but he continues to amaze me with his strength and courage.

Speaking of courage, Stan and I have memorialized Scott with tattoos. When Scott died, the hospital took his hand and footprints for us. Recently, Stan had this wonderful dream that we were walking down the beach with his handprints on each of us; Scott's arms around his broken parents forever. They used the handprints to make a stencil which was then colored in by the artist. Scott's left hand is on my left shoulder, and Scott's right hand is on Stan's right shoulder. It defintely hurt, but it was worth it. We have to go back in a month or so and add the words we want, which we are both still working on.

Please sign the guestbook and let us know you are thinking of us, it really means a lot to hear from you.

Remember to pray for courage.

Love and peace to all of you,
Romelle

Wednesday, June 22, 2005 7:51 AM CDT

To My Precious Scott:

Happy 9th Birthday in Heaven, my little cheeseman. I think about you all the time, and as I watch all your friends get older, I wonder what you would be like now. I am remembering all your birthday parties and wondering which one you liked the best.

I love you and miss you so much,
Mommy

Saturday, February 19, 2005 8:28 PM CST

It's so hard to believe it's been a year since our precious Scott died. We will gather tomorrow at our home with a few friends to honor his memory.

PRECIOUS CHILD

Words and Music by Karen Taylor-Good

In my dreams, you are alive and well
Precious child, precious child
In my mind, I see you clear as a bell
Precious child, precious child
In my soul, there is a hole
That can never be filled
But in my heart, there is hope
'Cause you are with me still

In my heart, you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart

In my plans, I was the first to leave
Precious child, precious child
But in this world, I was left here to grieve
Precious child, my precious child

In my soul, there is a hole
That can never be filled
But in my heart there is hope
And you are with me still

In my heart you live on
Always there, never gone
Precious child, you left too soon,
Tho' it may be true that we're apart
You will live forever... in my heart

God knows I want to hold you,
See you, touch you
And maybe there's a heaven
And someday I will again
Please know you are not forgotten until then

In my heart you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart

If you'd like to listen to the song,just cut and paste the following link:
http://www.compassionatefriends.org/precious_child.htm

To those of you who have helped us on this journey, thank you so much. Please leave us a message in the guestbook so we know that you're thinking of us.

When you listen to the song, think of our precious child Scott.

Love and peace, Romelle

Wednesday, January 19, 2005 9:54 PM CST

It's hard to believe it's been eleven months since Scott died. Although I know that he is with me, I long to hear his voice, touch his face, hug him.

The Mention of His Name

"The mention of my child's name
May bring tears to my eyes,
But it nevers fails to bring
Music to my ears.

If you are really my friend,
Let me hear the beautiful music
of his name.
It soothes my broken heart
And sings to my soul."

Author Unknown

I pray as my precious Scott told me to just days before he died; for courage. I ask that you all pray for our family: Stan, myself and Stan Michael, as we take the steps toward making a new life without our beloved Scott.

Wishing you all peace, Romelle

Wednesday, March 3, 2004 11:53 AM CST

Thank you everyone for your continued support. The caring of so many people is a great comfort. The process of grieving has just begun, and we know that you will all be there for us, just as you have been in these last six months. I'm including a copy of Scott's eulogy, written by our pastor, Fr. Hubbard. He baptised Scott in November 1996. Father Hubbard has been a huge source or strength and support for our entire family, especially throughout Scott's illness.

Wishing you all love and peace,

Romelle, Stan and Stan Michael

Lamentations 3:22-26, 31-33
Psalm 23
2 Corinthians 4:16 – 5:9
JOHN 14:1-6

Sermon for the Funeral of Scott Lysenko
February 27, 2004

Scott packed a lot of living into 7 ½ years.

He threw himself enthusiastically into a blizzard of activities with family, friends, schoolmates. He loved Cub Scouts, T-ball, soccer, swimming, Vacation Bible School, playing in the woods, catching lizards, frogs and, yes, geckos. And smuggling them home, even on airplanes, much to the surprise of his parents. He loved to draw, loved to bounce on the trampoline, loved to play Gameboy and Gamecube. He loved to go out at night with his Dad, searching for animals. He loved to pray, too, and got very, very good at it.

He was a terrific boy. And he used every opportunity to be a kid to the max.

And he was born with a condition, neurofibromatosis, that left him susceptible to brain tumors, like the one which cut all that full-speed-ahead boyish living off just a week ago.

It stinks. It really, really stinks. It hurts. It’s not fair. It doesn’t make sense. What kind of a world is it where this can happen to a kid?

It’s a broken world, this world we live in, in which terrible, tragic things can happen to good people, and to innocent little kids. We see the brokenness of the world manifested sometimes in the hurt people may inflict (deliberately or carelessly) on other people, sometimes in the accidents all kinds of people may have, and sometimes in mysteries. Like this one.

I don’t know why Scott had NF, or why he got the brain tumor, or why now. I haven’t heard any medical explanations for all this, and even if I did, they would not answer all of the question “why.” And I don’t have any “cosmic answer” for why this happened either.

But I do know that some of the so-called “cosmic answers” I’ve sometimes heard are wrong.

This tragedy is not a “test” of anyone’s faith. How cruel would that be. Scripture contradicts that theory: as today’s Old Testament reading says, “The Lord does not willingly afflict or grieve anyone.” There is no celestial sadist at work here.

I also do not believe that “this is God’s will.” Jesus never told that to a grieving person. Instead he affirmed that God’s will is life, healing and love.

But we live in a broken world—made by God, pronounced “very good” by God, but now broken. Broken, but one which is beginning to be made new by God.

In the Lord’s Prayer, Christians pray “Thy Kingdom come, Thy will be done, on earth as it is in heaven.” This prayer reminds us that God’s will is done perfectly and all the time in heaven—and that God’s will is not done perfectly and all the time on earth. Not yet. That is why we pray “Thy Kingdom come, Thy will be done, on earth as it is in heaven.” When the Kingdom of God comes, God’s will will be done on earth as it is in heaven.

In the meantime, God is with us here on earth, helping us to get through the pain, loving us and helping us to love others, opening our eyes to the wonderfulness of life here and now and promising that no matter when individual lives on earth end, that isn’t the complete end of those lives.

God understands pain. In Jesus Christ, God absorbed all the pain his torturers could inflict on him and never let himself be lowered to their level—he never let himself hate. Even and especially on the cross he radiated love—love that is stronger than pain, stronger than hate, stronger than death itself. God also understands helplessness; God the Father had to let his Son suffer and die without intervening so that he could absorb all of the world’s brokenness in his broken body on the cross, and so begin making the world new.

So if we’re ever in pain or ever feel helpless, God understands. God’s been there.

And as painful as suffering and death are, God promises that they are not the end.

St. Paul writes in today’s Epistle, “even though our outer nature is wasting away, our inner nature is being renewed day by day.” That happened with Scott. His illness was not just the last part of his life on earth; it became, you could say, “spring training” for his new life in heaven. His inner nature was being renewed day by day. And his renewal did not just benefit him; his precocious spiritual strength is an inspiration to us all. Just two days before he died, he reminded his mother they needed to pray for courage. He already had it, and got more.

The Lord is our shepherd. “Though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.”

Jesus promised his disciples—and all the faithful—in today’s Gospel reading that “I will come again and I will take you to myself, that where I am, you may be also.” Christ has been through death to new life—life unfettered by any illness, pain, disability or sorrow. Life without limits. Christ during his earthly ministry took children in his arms and blessed them; he always had time for kids. He still does.

Imagine what Scott is learning now about animals from the One who made all creatures great and small.

So today is a day we really hurt. Though Scott doesn’t hurt anymore. And today is a day it’s o.k. to ask “why?” Though ultimately, perhaps that isn’t really the big question. Perhaps the question is “How should we live?” I propose that we live with as much love of life as Scott had, and that we use the love that Scott inspired to join God in the healing of the world. There is a tidal wave of love that Scott inspired which has been visible all week, is visible today, and can continue to be visible for a long time to come.

Our broken world has too many children who no one takes to ponds to look for animals, who no one teaches to play soccer or to draw, who no one serves as a scoutmaster or a swim coach or T-ball instructor or Sunday School teacher, who no one reads bedtime stories to or teaches to pray, or visits when they’re in the hospital, or comforts when they’re lonely or discouraged. Let’s find some of those kids and share our love with them and make a difference in their lives, and when we see their eyes sparkle, we can say to ourselves, “This is for you, Scott: thanks for reminding us how to live.”

Scott’s O.K. now. Actually, he’s way better than O.K. It’s we who hurt. But we only hurt because we love, and therein lies the cure: not to love less but to love more, and to let the love of God flow into us and through us not only to give us hope for heaven, but to inspire us to make this world a little more heavenly.

(The Rev.) Francis A. Hubbard

St. Barnabas Episcopal Church

Tuesday, February 24, 2004 6:20pm

As many of you know by now, Scott died on February 20, 2004 at Texas Children’s Hospital in Houston, Texas. The incredibly compassionate people at Texas Children’s Hospital helped us so much in those last hours of Scott’s life; we will be forever grateful for the love and support.

The arrangements for Scott’s funeral are being handled by:

Gleason’s Funeral Home
1360 Hamilton Road
Somerset, NJ 08873
(732) 545-0700

Visiting Hours are on Thursday, February 26th
2pm-5pm and 7pm-9pm

Funeral Services are on Friday, February 27th
St. Barnabas Episcopal Church
142 Sand Hill Road
Monmouth Junction, NJ 08852
(732) 297-4607

Services begin at 10:30, parking is limited, consider carpooling

In lieu of flowers, we request donations be made to The Scott Lysenko Fund, PO Box 5212, Somerset, NJ 08875. When we are finished paying Scott’s medical bills, Scott’s fund will be converted into a charitable foundation to fund research for Neurofibromatosis, the disease which caused Scott’s brain tumor.

Thank you so much for all your good wishes and incredible support throughout Scott’s entire illness. It has meant so much to us.

Love, Romelle and Stan

Sunday, January 25, 2004 9:40pm

The Shannon Daley Memorial Fund is holding its 3rd annual Charity Basketball event. This year the Readington Men’s All Star Team will be taking on Darryl Dawkins & friends. Darryl “Chocolate Thunder” Dawkins is a former charismatic 14 year NBA Star and current coach of the Pennsylvania Valley Dawgs.

The fund has been established to help local area residents who are battling serious ailments and their families are experiencing financial hardship. This year’s event will benefit two families. The Bennett Family from Raritan Township whose children Conor (11) and Lucie (8) are both suffering from Batten disease. This disease is a degenerative disease for which there is presently no cure. The second recipient is the Lysenko family from Somerset whose 7 year old son Scott has Neurofibromatosis (NF). As a result of NF, Scott has an inoperable brain stem tumor. Neurofibromatosis is a genetic disorder for which presently there is no cure.

The event will be held Wednesday February 25th, 2004 at Hunterdon Central Regional High School Fieldhouse in Flemington, New Jersey. Game time is 7:00pm. Hunterdon Central Regional High School is located on Route 31 in Flemington. For further directions call (908) 782-5727.

Tickets for the game are $10 for adults and $5 for children under 12 in advance. All tickets are $10 at the door.

Please plan on getting tickets early because we anticipate another sellout.

For ticket information please call (908) 534-0692 or (908) 534-2823. Tickets also are available at the following locations:

Holland Brook School (908) 823 - 0454 ext. 656 Mr. Clymer
Readington Middle School (908) 534 - 2113 ext. 226 Ms. Sevell
Darrow’s Sporting Edge (908) 534 - 2838
Sneakers Plus (908) 788 - 2921

My little brother has a webpage, the address is:
www.caringbridge.org/nj/stanlysenko
He loves to read his messages.

Visiting policy remains the same. Although Scott continues to get stronger, his therapy and schoolwork take much of his energy. If you want to visit, please call us first to check if Scott is up for visitors, and keep visits to about an hour. Our family time is very important to us, especially now. No visits on Wednesday, Thursday and Friday, as Scott prepares for and recovers from Chemo during those days. Visiting hours are over at 5pm.

It’s been a long time since I’ve updated Scott’s journal. We were able to make our trip to Florida in November. Our friends, Scott and Myla, had a beautiful wedding and it was such much needed time to relax. Scott and Stan Michael enjoyed Disney World and visiting with their Aunt Eleanor and Uncle Don. We were blessed with beautiful, warm weather and swam almost every day.

We came home from Florida on November 29th, put up the Christmas decorations, and started the countdown to the holidays. The weeks before the holidays flew by as we resumed our weekly trips to Philadelphia. We were tense as we awaited results from his MRI which was done on December 3rd. Unfortunately our MRI films were misplaced by Children’s Hospital of Philadelphia (CHOP). The bureaucratic nightmare took weeks to get straightened out, and the hospital finally received the films on the Tuesday prior to Christmas.

Scott developed a fever on Monday, December 22nd and wound up hospitalized for a few days. While he was hospitalized we found out that the MRI results would have to wait until after the holidays. The further delay of the MRI results was a huge disappointment, and we were worried that Scott would spend Christmas in the hospital. Tests revealed that Scott had the flu, and his initial blood cultures came back negative, so he was released on Christmas Eve. We were home by the afternoon, and the Christmas holiday festivities came together. We had a houseful of family on Christmas Day. It was an exhausting but happy holiday.

Scott’s health improved enough to complete his cycle of chemotherapy on Tuesday, December 30th. (It had been postponed from Tuesday, December 23rd due to his hospitalization.) Unfortunately, his asthma has been doing poorly this winter and by New Years Eve, he seemed very low. Stan and I cancelled our plans to visit friends, and stayed home and hoped that Scott would be able to sleep. I brought Scott to the pediatrician the next day, and he had an ear infection and possible pneumonia. He was given antibiotics for the ear, and inhaled steroids for the asthma, and within 24 hours he seemed to be improving. A chest x-ray was inconclusive. Either he had pneumonia or a partially collapsed lung due to his asthma. By January 5th, he seemed much healthier, and still had several weeks of his break from chemotherapy ahead of him. He was able to attend school on a fairly regular basis for the first time this school year. He was really enjoying himself and we just hoped he would stay healthy.

On January 15th we got the long-awaited results from the MRI. Scott's tumor has shrank significantly (about 30 percent). In the beginning, we were told that in the initial phase of chemotherapy it would be considered a success if it just stopped growing. I wish I could say I was really happy at the news, but looking at the scans and seeing that tumor which is causing so much suffering for my son was a deeply disturbing experience. It was much harder than I ever expected it to be, and I cried most of the car ride home. (I was alone. This was a visit for the parents only, and Stan had to stay behind to snowplow due to a storm the evening before).

Scott’s break is over now, and he resumed chemotherapy on Thursday, January 22nd. He was excited about going back to the hospital; he said he missed his doctors. He’s had a rough weekend. He seems very weak from the chemo, and just doesn’t feel well.

Please know how much your support means to us.

Our love to all of you,

Stan and Romelle

Wednesday, October 29, 2003 8:44 PM CST

November 2, 2003 is the Pancake Breakfast our friends are putting together. The hours are 8am until Noon. It will be held at the Community Firehouse at 710 Hamilton Street in Somerset. Many people have inquired about The Scott Lysenko Fund which our friends have established. The address is: P.O. Box 5212, Somerset, NJ 08875.

My little brother has a webpage, the address is:
www.caringbridge.org/nj/stanlysenko

Visiting policy remains the same. Although Scott continues to get stronger, his therapy and schoolwork take much of his energy. If you want to visit, please call us first to check if Scott is up for visitors, and keep visits to about an hour. Our family time is very important to us, especially now. No visits on Wednesday, Thursday and Friday, as Scott prepares for and recovers from Chemo during those days. Visiting hours are over at 5pm.

HATS HATS HATS!!!! Scott asked if I could put this on his webpage: If anyone has hats they would like to clear out of their closets (infant, child or adult) please send them to us. If you're coming to the pancake breakfast, bring them to the breakfast. There is a hat box at The Children's Hospital of Philadelphia's Oncology unit, because so many of the children lose their hair. (And when you're wearing a hat most of your waking hours, you need more than one.) We brought up a bunch a few weeks ago and they were gone within a few hours.

We are settled in at Ronald MacDonald house for the night. Stan and Scott are both asleep, but I like the quiet time before I turn in. This Ronald MacDonald house was the first one every built. Part of it is in an old mansion (the Swain mansion), built in 1880. I took some pictures of the lobby area, so check out the photo album.

This is really an incredible place. For a very modest daily rate, you get a hotel room for as long as you need it. We usually come for one night at a time, but we've met families that have been here for months. A fresh dinner is prepared nightly by different volunteer groups. Tonight was a Halloween party. They had face painting and costumes for the kids to wear. People were walking around the dining area giving the children little toys and treats. Unfortunately, Scott is mostly sad when he's here. Sometimes it starts on the car ride down, sometimes not until we arrive. Because no matter how nice it is here, this is where he goes before he has his chemotherapy.

I was thinking about this tonight, while there were children all around us; most of them having fun. At first, I wished Scott was happier, like the other children. But as I thought about it, the only time that Scott seems sad is when he's here or at his treatment. The rest of the week, for the most part, he's able to put his problems aside, and be happy and enjoy life. It's really a remarkable thing when you think about it.

Your prayers, love and support mean so much to us.

Our love to you all,

Romelle and Stan

Monday, October 27, 2003 10:01 PM CST

Monday, October 20, 2003 9:13 PM CDT

So much has happened in these past two weeks. Scott is now in week 7 of his chemotherapy. After this Thursday he will have three more treatments, and then a much needed three week break. We will go to Florida to attend our friends, Scott and Myla's wedding, on November 20, and spend several days in Disney World after that. An MRI will be done on December 3rd to access his progress, and treatments will resume the following day. His next cycle finishes up on Tuesday, December 23rd, just in time for the holidays. Yippee!

We went camping over the Columbus Day weekend. In addition to the Rizza and Hadju-Nemeth families, our niece and nephew, Bryan and Torrie joined us. We spent a wonderful couple of days together in Maryland, just hanging out, playing games and relaxing.

Scott's therapy sessions are going very well, and you can see progress in him every day. He has started joining his friends at MacAfee Road School for lunch period, which he is really enjoying.

I will never forget today. I was trying to think back to all the milestones in Scott's life. I remember his first attempts to crawl (on the day before the huge first birthday bash we threw for him). I had so much work to do, and he was getting into everything! By the next day, he had lost interest in crawling and never crawled again. I know he started walking when he was sixteen months old, although I cannot remember his first steps. I have no idea what his first word was. I remember potty training vividly. I remember his first day of school. I can't remember when his first teeth came in. Today I will remember. Scott ran! It was the most incredible thing to watch, and seeing the joy in his face is a moment I will never forget.

I'm sure most of you have heard by now of the Pancake Breakfast our friends are putting together. It will take place on Sunday, November 2 from 8am until Noon. It will be held at the Community Firehouse on Hamilton Street. Please call our friend, Jamie Rizza at (732) 873-0062 if you need more information about the breakfast or the fund that is being established to help with Scott's medical expenses.

Scott loves reading his guestbook, thanks for all the messages. Thanks also for your prayers, love and support. It means more to us than you can imagine.

Love, Stan and Romelle

Monday, October 6, 2003 9:50 PM CDT

It's hard to believe it's been a little over a month since Scott's diagnosis. The outpouring of support has been incredible, we can't thank you all enough for your prayers, cards, phone calls, gifts and meals. For those of you who haven't heard the details of his illness, a brief summary follows:

Scott was diagnosed with a brain stem glioma on September 3, 2003. His initial symptom of intermittent vomiting suddenly progressed to a lack of balance and weakness on his left side. We went to the emergency room on the evening of September 1 (Labor Day) Thirty-six hours later, following an MRI, we had the diagnosis. Although the doctors do not believe the tumor is cancerous, it is in a very bad place in the brain.

After several days at Robert Wood Johnson University Hospital, we sought a second opinion from the Neuro-Oncologists at Children's Hospital of Philadelphia. (Scott's tumor is considered inoperable, and although it is most likely not cancer, it needs to be shrunken via chemotherapy, that's why he is being treated by oncologists. Radiation is not recommended for pediatric brain tumors, unless they are aggressive.). Within six days of our initial visit to CHOP, and after the favorable results from his PET scan (which showed the tumor to be low grade), Scott received his first chemotherapy treatment.

Last Thursday, October 2nd, was his fourth treatment. He is tolerating the treatments quite well. He is mostly tired and irritable in the days after his treatments. A chest port was surgically placed prior to his second treatment, and this makes things much easier for him. He receives only one needle stick per treatment, which he barely feels. (We apply Emla cream before we arrive, which numbs the area completely). This week he said he didn't feel a thing!

Scott's biggest challenge right now is the nerve damage to the left side of his body. His entire left side, from his neck to his toes, has been affected. He is currently undergoing Occupational and Physical Therapy treatments two to three times per week each. He must do daily exercises at home in junction with his therapy. In addition to our one and a half days in Phildelphia for Chemo, and his home schooling five mornings per week, he is a very busy guy.

Just a few things we'd like to clarify:

Please understand that this is an incredibly difficult time for our entire family. If you call, please understand that it may take us days to get back to you. If you want to visit, please call us first to check if Scott is up for visitors, and keep visits to about an hour. Our family time is very important to us, especially now. No visits on Wednesday, Thursday and Friday, as Scott prepares for and recovers from Chemo during those days. Visiting hours are over at 5pm. Scott is rarely awake past 6:30pm, and needs time before bed to take medictations, etc.

If you want to help in some other way please check with us first, we have several groups which are already sending meals regularly. Scott's treatment course is over a year, and we know that we will need your help in the weeks and months ahead.

Again, we can't thank everyone enough for their support as we begin this difficult journey. Please be patient with us as we figure things out.

Love, Stan and Romelle

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