Journal History

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Monday, September 20, 2010 7:34 PM CDT

It has been quite some time since I have posted on here, mainly because I had some technical difficulties with the site but a wonderful representative guided me through today to get it up and running.

Life as we all know has its ups and downs. Certain times of the year make the days more difficult to get through than others. The start of school makes me nuts, Michael would have been an 11th grader this year, getting his permit and heading to the prom.

This week is difficult as September 24th approaches. That was the day Michael was admitted to the hopital with a fever, pneumonia in both lungs and a month in ICU- never to return home.

That day will live in my heart forever as many other days do . I can remember what he did, who he was with and what he was even wearing. The sound of his voice and his breaths as he cried it was difficult to breath.

I honestly felt the need to update the website today.
I know many of you check in on occasion and Michael is remembered always by everyone. It is greatly appreciated.
I never want my sweet boy to be forgotten.

With Love
Sharon

Wednesday, October 21, 2009 11:51 AM CDT

Today is four years that Michael passed away. Some days it feels like yesterday and other days it seems so long ago.
Not a minute of the day goes by that we don't think of him.
We miss his smile, his laugh his funny personality and the warmth that he shared with those he loved.
His spirit remains in our hearts and he is surely with us everywhere we go.
He touched so many lives and his legacy is imprinted in the hearts of many.
I love you Michael.

Peace and Love
Sharon

Tuesday, July 21, 2009 10:36 AM CDT

Sadly this morning a good friend, Detective Marc DiNardo, Jersey City Police Department passed away. Marc was shot in the line of duty last week. He was a loving father of three children ages 4, 3 and 1 and a husband to his wife Mary. Please pray for this family as the road ahead will be a tough one. He joins Our Heroes in Heaven.
You will be missed Marc We love you!

Sadly
Sharon

Sunday, June 21, 2009 9:44 AM CDT

Happy Father's Day! To those who can celebrate their children here with them, enjoy the day, savor the moments and tell them you love them. To those dads who have lost their children- they are with you every minute of the day in your heart. I pray that you will have the strength to get through the day.
To those of us who lost our dads - remember the lessons that were taught. They knew best!!!

Warmly
Sharon

Monday, June 8, 2009 0:00 AM CDT

Happy 15th Birthday in Heaven Michael! You are missed dearly and are loved so very much. We're sending our love, hugs and kisses to heaven as our hearts ache today.
Mommy can remember the day you were born like it was yesterday.
just know that everyone is thinking of you and remembering you today , tommorrow and always.
I can't even begin to think of what "15" would be like for Michael if he were here- his looks, his friends etc.
He will always be 11 in my heart!
So many of you do remember our sweet boys birthday- please do something nice for someone in Michael's honor today.
We will have a balloon release at the tree that is planted at the park for him. We will also have "White Cake with White Icing" as Michael always said to celebrate the wonderful life that we were blessed with for a short while.
Thank you all for remembering our family on such a difficult day.

Love
Sharon

Sunday, May 10, 2009 8:54 AM CDT

Happy Mother's Day to All!

A special blessing to all of those who are without our sweet children today. It is extremely difficult not only today but everyday as we already know.

Yesterday I had the opportunity to participate in Kids Walk for Kids With Cancer in Central Park. I was so happy to see Gina (Harrison's Mom) and her mom Rose, the MSKCC doctors were there and so many of the patients from the floor. It was amazing to see how many high school children were their to show their support.

So as we go about the day for those of us with other children we will try to find some peace but the heart still aches. Life will never be the same again- just very different.

As I went to the cemetary very early this morning there were 5 pink tuplips bloomed at Michael's grave. He and I shared a love for Tulips- so I truly felt that despite all the rain and wind we had the past few days they were meant to be there today. I love you little buddy with all my heart. I miss you!!!! You are my forever SWEETHEART

Sharon

Tuesday, April 28, 2009 10:22 PM CDT

Signs, Signs and more signs.....

Today was a very big day in the Romano household as Frankie was inducted into his new endeavor.. Student Government President. I couldn't be more proud of him and his many accomplishments. It's always exciting to go visit and be part of his college. The one thing that is bothersome is Michael not being with us. Of course we know he is in our hearts, but life would be so much better to have him back and with us.
On the drive to Rider, we played the radio and once we got closer to the campus the channels started to fade and Philadelphia stations came in and out. As I searched for a channel that worked 102.7 still came through a bit and
Green Day " Good Riddence" was playing. For those of you that dont' know that was the song played at the end of Michael's funeral mass also known as Time of Your Life
So, I truly believe that was Michael's sign to let Anthony and I know that YES he was traveling with us.
The ceremony was very nice and Frankie couldn't have looked happier. He haas a nice bunch of young men and women that he will be working with. He took Anthony over to the "FRAT" house and they hung out for a bit, we also made a stop in the school store AKA Gift Shop- We can always use a new rider T- Shirt.
I just wanted to take the time to share that small story with you about the song and the BIG accomplishment of Frankie's today. He is a great young man- just like Michael and Anthony. I am so proud.

Love
Sharon

Thursday, April 16, 2009 2:34 PM CDT

As the Yankee opener took place this afternoon- how could I forget the love Michael had for his team.
The memories we have in our hearts mean so much. There are so many stories to look back and reflect on.
So many special people who made sure that Michael was happy each and every time he attended the park. Sometimes he didn't want to be bothered and that was ok too!

The old stadium held all of our memories. The new one we can only dream what Michael would think of it.

As the men in pinstripes play their first game..we wish them luck. There is a whole team in heaven routing for them.


We miss you #2

Love ya Forever
Mommy

Sunday, April 12, 2009 8:40 PM CDT

Happy Easter Michael! You are missed today, yesterday and all the tommorrow's ahead of us.

You are always with us buddy!

Love you forever and ever!

Sunday, March 22, 2009 11:43 AM CDT

When Irish eyes are smiling!!!!!
Michael's eyes always twinkled. He loved the parade on St.Patricks Day- Today we remember all the good times spent watching the parade together- sometimes feeling well and sometimes not. Once when he was bald I painted a shamrock on the top of his head.
He loved to sing the Unicorn Song- Anthony sang it for us on Tuesday.
As we head down to the main street to watch we will be thinking of our little guy.
The bagpipes certainly have a different meaning to them as they were played at Michael's funeral mass.

Thinking of you all today
sharon

Sunday, March 8, 2009 8:25 PM CDT

Cheryl Crow, Payton Manning, Hillary Clinton, Joe Biden and
Frank Romano, Jr...What does Frankie have in common with the above group of people??? Well, as of today they are all members of ODK- Omnicron Delta Kappa Leadership National Honor Society. Frankie was inducted today at Rider University and I can't be more proud of him. He has already requested to be possibly nominated to the executive board. Frankie has worked so hard the past 3 years at school, he's made the Dean's List each semester. Yesterday he attended the Sigma Phi Episilon Fraternity Formal in Pennsylvania. He will be home next week for his Spring break. Anthony is thrilled that he will be able to spend some time with his brother. No matter where we are there is ALWAYS something that comes us that relates us to Michael.
Today- the t-shirts that were sold for ODK were Light Blue , Michael's favorite color- Frankie gave a little smile. So no matter what takes place in our lives Michael is in our hearts, soul, mind etc.. He is missed so much
by US, his family and his dear friends. Last week was Samantha's birthday, his best friend, we have been giving her tulips since Michael passed away and will continue to forever....
Baseball is just around the corner and Anthony is working his heart out. He loves the thought of being at the field He's working so hard and this year he will be playing in the Majors. Good Luck Ant! Hit a homer.....
Until the next post- please continue to pray for all of the children in treatment at this time and for those families who are struggling everyday without their children.

Warmly
Sharon

Sunday, February 22, 2009 8:55 AM CST

Perhaps they are not stars,
but rather openings in heaven
where the love of our lost ones
pours through and shines down
upon us to let us know
they are happy.

The above is an Eskimo Legend. Many nights I do look up in the sky and see the stars and think which one could be Michael. The brightest, most shining one. I do hope and I am almost sure that he is happy. As much as we are saddened to not have him with us, I know that he is not in pain nor is he suffering. He did that for so many years and mostly with a smile on his face. I would give anything to have the days back where we just sat on the couch in pj's all day and watched movies or planned the dinner menu or to hear his voice that so many times was laughter with his brothers. As we all know God had something else in store for my sweet little boy.

Sadly, one of the students in my school passed away this week. The emotions were very intense and my heart goes out to the familly as it was medically sudden. It put me in a place where I could sense how life was the day Michael passed away. We are all in this for a short time.....
Life on the other side is the place where we will be together forever.

Sharon

Monday, February 16, 2009 8:06 PM CST

I have reflected today on so many of the memories that were shared at MSKCC. Michael met so many friends- but only a few became like family. Harrison Nichols was one of those children. Michael adored Harrison, Anthony loved him just as much. I loved Harrison soooooo much.
Tommorrow will be one year since Harrison passed away. I share the pain his parents feel. My heart goes out not only to them but his grandparents, aunts, uncles and cousins to whom he was so close.
Gina and I talk alot, share alot. Tommorrow there will be nothing that I can say to her that will bring comfort.
Most of you who knew Michael, knew Harrison from our stories. Harrison was the KING OF LEGOS, a fan of PETALUNA'S, not just your typical kid.
Harrison's favorite flower was the Sunflower, and we always think of Michael when we see ladybugs. There have been so many things that have been purchased by either myself or Gina that have had both on them.
I ask that tommorrow as you go about your day, think of Harrison and the love that he shared with all of us. His spirit continues to be with us.
We love you Harrison Nichols- You will be forever in our hearts.


Sharon

Sunday, January 25, 2009 1:46 PM CST

After being affected by cancer in your life, you somehow choose to continue to support the many charities that have either supported you in the past or those who are fighting to find a cure for the beastly disease that took the life of your child, sibling, grandchild, nephew/niece, cousin or very close friend.
Our family supports many different charities in Michael's Memory. Next week we will support the one that Frankie holds close to his heart, CAMP SUNSHINE, CASCO MAINE.
We stayed there as a family with Michael on several occasions and we also went to a bereavement weekend in May 2006. Frankie has gone back and volunteered on his own.
He works really hard in his fundraising efforts for this wonderful charity. As of today, between Frankie, Anthony, Uncle Brian, Aunt Lisa and Cris they have raised over $3,000 . That is enough to give two families the experience that we have experienced.
On Saturday, January 31,2009 at 2pm please think of these brave men and women , boys and girls who are taking the plunge into the ocean in such frigid weather.
I am so proud of the accomplishments the boys have made and their efforts to continue to keep the spirit alive of their brother, who they miss so much.

To make a donation:

www.freezinforareason.com
cLick - AJ's Polar Plunge NJ
Go to Fundraiser pages and you will see ROMANO in alpha order.

Monday, January 19, 2009 3:15 PM CST

January 19th may see like an ordinary day to most.
For our family January 19th,1999 changed our lives. Ten years ago today My Sweet Angel Michael was diagnosed with neuroblastoma. It led us on a journey that no parent ever plans for their child. I can't remember somedays what I did yesterday or where I placed something that I needed just hours before- but I remember January 19th, 1999 like the back of my hand. Michael had been in the emergency room the night before because he was not eating and was extremely lethargic. We had an 8 a.m appointment for a CT Scan. Never did it cross my mind that my child would be diagnosed with CANCER.
I stood in the kitchen, with a notebook and pen and listened to my pediatrician say that awful word "MASS". The day was gloomy and raining outside.
There was no time to waste- he scheduled us for an appointment at Tommorrows Childrens Institute in Hackensack Hospital. Some days ahead were good and some were bad.
Michael always seemed to have a smile and rarely complained.
He was compassionate to everyone else's feelings , forgetting that he too also was a cancer patient.
I think back today of all the hospitals that he was treated at, the many famlies that we meant along the way and so many of the memories that were left in out hearts.
Those people became a second family to us. The kindess of volunteers, the expertise of many doctors and nurses will always remain with me as I am thanksful for them for taking care of Michael.
I wish so much we could have him back- life will never be the same. I continue to keep Michael's spirit alive and honor him in so many ways.
Michael- WE LOVE YOU BUDDY! YOU ARE FOREVER IN OUR HEARTS

Wednesday, December 31, 2008 5:04 PM CST

When I think back to the many New Years Eves Michael spent with us having fun, playing games and eating stromboli I see his smile and hear his laughter. In 2002 I thought that transplant would have given us many more to spend with him. Two more was defintely not what we wanted.
I know he is with us for every celebration, holiday and just an ordinary night at home. I feel him.
Yesterday they boys and I went to see Adam Sandlers movie "Bedtime Stories" - it was very funny. The entire time I thought of the phone call Michael received from Mr. Sandler in the hospital in October 2005. What a kind hearted man to spend 15 minutes on the phone with my kid.
As we ring in the New Year, our hearts are still hurting and we miss Michael more and more. I pray that those children battling tonight are given the strength to fight another year. Every minute of each day is so precious for these children. And to those parents whose children are with my precious Michael in Heaven..I'm sending peace and love.

Warmly
Sharon

Monday, November 24, 2008 9:30 PM CST

I happen to be very open to signs over the past three years and take them seriously. A group of ladies from work decided to give up our holiday grab bag and make the donation to an adopt a family at Hackensack Hospital TCF.
We had a small family last year and had hoped for the same this year. We got a family of 4 children and their parents.
Of course you always want to make sure everything they ask for is purchased. With our small budget we weren't sure if it would work. When I asked the woman what the patient wanted she read the items off of his list. There were only two things: Curious George and Tom and Jerry Cartoons.
Without hesitation I told her we would take them.
The reason being Michael loved to watch Tom and Jerry and our sweet friend Harrison who passed away in February loved Curious George. I took that as a sign that this family needed us.

Things get tougher around the holidays, basically it starts in October for me. About a week ago Michael's Award was given out at the Baseball Dinner and it went to a great kid!

Anthony is taking Trombone lessons and might make his first debut at the Christmas Concert in school.

Frankie can't wait to come home this weekend- his cast is off and he's working real hard in his third year of college.

We do have alot to be thankful for as many of you do as well
May you and your familes be blessed this Thanksgiving and remember those who don't have it as easy.


Warmly
Sharon

Monday, October 20, 2008 11:13 PM CDT

In Loving Memory of a son, brother, grandson, nephew, cousin and FRIEND. Three years since he left us, thank you for always remembering such a special boy.

God's Garden

God looked around His garden
And found an empty place
He then looked down upon the earth
And saw your tired face

He put His arms around you
And lifted you to rest
God's garden must be beautiful,
He always takes the best

He knew that you were suffering
He knew you were in pain,
He knew that you would never
Get well on earth again.

He saw the road was getting rough
And the hills were hard to climb
So He closed your weary eyelids,
And whispered "Peace Be Thine."

It breaks our hearts to lose you
But you didn't go alone.
For part of us went with you,
The day God called you home

Tuesday, October 21, 2008
Thoughts of Michael were all over today. From what song was heard on the radio, to tulip bulbs planted and what favorite dish of Michael's was eaten at dinner. I am sure there are so many other ways that he was remembered today.
We appreciate all of them and how each and everyone you NEVER forget our Hero.
A special thanks to Michael's FRIENDS who shared their time at his tree. Whether as a group or individually it certainly meant alot.
As the day has come to an end- I ask all of you to continue to pray for those children still trying to beat this disease and for those ANGELS who have joined Michael in the Field of Heaven.

Warmly
Sharon

Monday, October 20, 2008 10:57 PM CDT

Wednesday, September 24, 2008 6:29 PM CDT

Three years ago today Michael went to the movies and a birthday party afterward. He was supposed to be part of a fundraiser in NYC that evening. I attempted to bring him and he just didn't feel well so as we approached the tunnel I turned around and brought him home. He slept for a bit and woke up with a fever. We headed back to the tunnel into the city to urgent care not knowing there wouldn't be a return trip home for our sweet little boy.
I can't help but to write my feelings out today. I have relived the ride, the urgent care admit, the moaning and gasping for air . It was a side of Michael I had never seen before. The days ahead were unknown to us. Things worsened- Michael's smile and attitude changed. I do remember him feeling a little bit better on the nights that the Yankees were in the Championship. This week as the stadium closed and the last game was played another chapter has closed for our family. As Derek Jeter said in his speech "I hope that the memories that were made in this stadium and passed down will continue over to the new stadium" I don't know how easy that will be for us. The House that Ruth Built gave us more memories than anyone can ever imagine. It's hard to beleive sometimes that Michael met so many of the players past and present. He laughed with them, ate with them, stretched with them and even flew on their private jet.
I am so grateful that he had the opportunity to do all of that. But, I would trade it all in a heartbeat to have him back with us. So as the days lie ahead and we approach October 21st, think of Michael and all of the good things he enjoyed in life. Yes, it was definitely too short of a time spent here but so many good things came about for him that made him happy. I know he's smiling down on us :)
WE LOVE YOU MICHAEL!!!!!!!!

Tuesday, September 2, 2008 3:57 PM CDT

It's that time of year when the hustle and bustle of school supplies are being purchased and uniforms and new sneakers.
The past the past two openings of school were difficult; when the bell rang in the upper grade school yard and Michael wasn't there.
This year as I drop Anthony off in the big school yard (5th grade) the empty feeling will still be there. Michael would be going into high school. It's hard to even imagine.
Michael's class has now all gone their separate ways, some public and some Catholic school.
I truly beleive with all my heart that he is still sending signs. The little red ladybugs.... Last week I had one on the ceiling in the living room as Anthony and I sat and watched the "Yankee" game. It stayed for two days
On Saturday I took some pictures to be framed and when I took them out of the bag, another ladybug was crawling on my shirt. I just beleive it's reassurance. The pain in our hearts will always be there, sometimes these little signs at the right time do bring a smile to our faces which is sometimes difficult to do.
It will be three years since Michael has passed away, there isn't a moment that goes by that we don't think about something funny he said, his favorite song or meal or how many lives he touched in many different ways.
As I drop Anthony off in the school yard, speak to Frankie at college tommorrow ,
Michael will be in my heart as always :)

Michael's schooling did not only happen at Midtown Community, but he had a teacher at the hospital and a classmate. Michael and his classmate Alexandra became very close friends. They laughed more than they learned some days. Alexandra still keeps in touch with me and is also heartbroken about the loss of her friend. She wrote a small story about Michael that her school published and in the Spring she wrote an essay about her life for a contest to win a trip to China
In May she was notified that SHE was one of 24 winners in the US to go see the Paraolympics, in China. Alexandra had her leg amputated due to her form of cancer. She goes to music classes at Juliard, skiis, and participates in Amputee Camp every summer. This is a wonderful opportunity for her. She left today. So be safe and have fun.

Monday, August 11, 2008 10:31 PM CDT

It's been awhile since I've updated here. It was very difficult to get through the month of June, but we did.
Anthony played an awesome part in the 9 year old All Star Tournament. Frankie taught an enrichment class at St. Peter's Prep. The boys and I took a cruise to Canada- it was actually the first time we were away since Michael passed - as much as we enjoyed it it was difficult for me to not have him with us. Although the boys can be open about signs and stuff sometimes- our dining table was a table for 4 so we sat with the empty seat each night. Frankie mentioned that it was like the space was left open for our special MICHAEL. They took a great picture of me and the boys and it's just not the same without Michael's face in it. There was a woman in Halifax who was an Angel reader- I purchased her book and she did a quick reading from and Angel card- without knowing my background my Guardian Angel Card read that I should try to heal my heart. Well, my heart will never be the same: the band aid might cover the wound but it will never permantly fix it.
It doesn't get much easier - life continues to go on but in a much different way.
I will continue to pray for all of our NB warriors and for the families who are struggling without their children.


Sharon

Thursday, June 19, 2008 1:29 PM CDT

The graduates enttered the auditorium side by side today walking to the sound of Pomp and Circumstance all of them but our sweet Michael. The memory of him was present by all of the graduates wearing the gold Pediatric Childhood Cancer pin close to their hearts. The yearbook was dedicated to Michael and his award was given to two very special young ladies who were so well deserving. I wish everyone could have received it for their spirit and enthusiasim. The Valdevictorian had sweet words to say about her classmate Michael. I can honestly say that his presence was felt and as the audience watched the slideshow of the eighth grade school year and all of the memories that went along with it, Our Hero, Our Angel Michael was the last picture shown- his Yankee Jersey and baseball cap and his big huge smile . We miss you Michael, your friends miss you! You will forever remain a part of their hearts and their memories of Midtown Community School.
So, to the Class of 2008 I wish you all the best may each and everyone of you know that our family will always remember how special Michael's friends were to him.

Warmly
Sharon

Sunday, June 8, 2008 6:25 AM CDT

HAPPY 14th Birthday MICHAEL. This is the 3rd birthday without you here with us. We miss you and I hope that you can feel all the love that our hearts hold for you.
We will be celebrating YOU today. Anthony is looking foward to White Cake with White icing.

Our sweet little boy is missed so much every day, when a significant milestone such as the birthday comes along it makes it that much more difficult to get through the day.
We have chosen to CELEBRATE Michael's life by hosting an Alex's Lemonade Stand for Childhood Pediatric Cancer.
I'd much rather be taking him to a Yankee game or dinner at Arirang. But knowing how Michael lived we chose to keep his spirit alive by helping others today.
A monument is being dedicated to him at the baseball field, in an area where kids play all the time.
Throughout your day today, please stop and think of one funny or happy thought of Michael in CELEBRATION of his birthday.

With Love
Sharon

Saturday, May 24, 2008 6:19 PM CDT

What a great week in baseball for Anthony. He did an awesome job on Thursday at his regular season game. Today he team won two games in a Memorial Day Tournament- he hitting was fantastic. Keep up the good work Anthony! You make us proud.
Frankie just returned home from a conference in Indiana. He was sent by his Sigma Phi Epsilon Fraternity. He enjoyed it.
Congrats Frankie, once again for making the DEAN'S LIST.
Two years down, two to go. He is home for the summer and will be teaching at the Higher Achievers Program at St. Peter's Prep- his Alma Matta.
The students at my job have taken on a project where they are making pillow cases to donate to the hospital in Michael's Memory. Keep going guys! You have brightened a child's day....

Missing you today, tommorrow and forever MICHAEL



Love
Sharon

Sunday, May 18, 2008 10:14 PM CDT

After viewing for the first time in two and a half years family videos- my breath is taken away. The life that I once knew before cancer was one of laughter and no worries, that I seemed to forget about until this weekend. I would trade the world to have that back again, but as we all know it's not possible. Part of me always remembers Michael as the 11 year old child that he was when he passed away and a small part of me wonders "Who would he be today"
The sweet little voice, and most beautiful smile...that was Michael.
I learned this evening that the Graduates of St. Mary Star of the Sea dedicated a page in their yearbook to Michael and another classmate who also passed away. Michael attended Pre-K there before diagnosis and went back there for the beginning of 1st grade. Thank you Graduates for remembering your classmates in such a special way.

Sharon

Thursday, May 8, 2008 9:11 PM CDT

Everyday is a struggle in the lives of a mom who has lost their child. As Mother's day approaches us on Sunday- it is a difficult day. We go about our daily routine , smile when someone smiles at you and walk in a world that others know as "normal". When we are asked How Are You? we often say OK or "Getting By" but really inside we are hurting, heartbroken and full of pain.
So to all the moms who have an Angel, I will be sending my love to you as we all struggle to get through the day.
Those of you who are blessed with healthy children, love them , hug them, kiss them.
This poem has been posted before but it kind of sums up what us MOMS feel. Our Angels walk with us but that feeling can never replace having them next to us to hold forever.

MY MOM LIES
Author Unknown

My mom, she tells a lot of lies
She never did before
From now until she dies,
She'll tell a whole lot more

Ask my Mom how she is
And because she can't explain
She will tell a little lie
Because she can't describe the pain.

Ask my mom how she is
She'll say "I'm alright".
If that's the truth,then tell me
Why does she cry each night?

Ask my mom how she is,
She seems to cope so well
She didn't have a choice you see
nor the strength to yell.

Ask my mom how she is
"I'm fine , I'm well I'm Coping"
For God's sake Mom, just tell the truth
Just say your heart is broken

She'll love me all her life
I loved her all of mine
But if you ask her how she is
She'll lie and say she's fine.

I am here in HEAVEN
I cannot hug from here.
If she lies to you don't listen
Hug her and hold her near.

On the day we meet again
We'll smile and I'll be bold
I'll say "You're lucky to get in here,MOM
With all the lies you told!"

Monday, April 21, 2008 11:54 AM CDT

Everyday our sweet Michael is missed so much. He is thought about from the minute we wake up in the morning until the minute our eyes are closed in the evening.
Today is 2 1/2 years that Michael left us. The days are long. Sometimes it seems like yesterday and other times it seems so long ago. As time goes on it gets harder.
We carry him in our hearts but life is not the same and never ever will be. His smile, his voice, his soft skin on his big cheeks- never to hear or touch again.
We love you Michael !!!!!!!!!

My dad started to find lots of pennies after Michael passed away and showed me this poem. When my dad passed away I continued to pick them up. Several weeks ago Anthony and I were emptying a box of football helmets that were Michael's and packed away for quite some time and what do you think Anthony found at the bottom of the box a shiny penny....

Pennies From Heaven

I found a penny today
Just laying on the ground,
But it's not just a penny
This little coin I've found.

Found pennies come from heaven,
That's what I've been told,
By Angels watching over us
From their clouds of gold.

When an Angel thinks of you
They toss a penny down,
Sometimes just to cheer you up
To make a smile from your frown.

So don't pass by that penny
When you're feeling blue,
It may be a penny from heaven
That an Angel's tossed to you.

'In God We Trust' is not a phrase
Just printed on a penny,
It's something to remember
When your troubles seem like many.

So when you're down and it seems
Your life has a blue tint,
That penny on a sidewalk
May be truly 'heaven-cent.'

Monday, April 7, 2008 10:13 PM CDT

Spring is not totally in the air but baseball season sure is under way. The opening day of the Yankees always touches me knowing it was something that Michael looked foward to. Many of you sent emails stating that you were thinking of Michael with opening day- thanks for always remembering. There happened to be a photo of the stadium in the paper with big letters "FAREWELL" printed across it. It was so hard to see that as there are so many memories attached to that stadium. That was such a big part of Michael's life and happiness as well as Frankie and Anthony's.
Anthony will have his first opening game on Saturday. He has worked hard the past few weeks taking private pitching lessons....Strike em out Anthony!!!!!
Frankie was extremely busy in the past few weeks campaining at Rider University for the position of Student Government Secretary. Well the votes are in and he has earned that position. Great Job Frankie!!!! You have worked to hard in the past two years , keep it going. He has also been accepted into a leadership program DARSTOC which will enable him to broaden himself in the advancement of leadership skills. Seems like we have a politician on our hands. All of the goodness that shines through them makes the days a little easier to get through. The heartache is still there and will remain forever for all of us as we miss our sweet MICHAEL! We love you buddy!!


Sharon

Saturday, March 22, 2008 11:04 PM CDT

Happy Easter Michael! You always loved to color the eggs and see how dark you could get it to turn. We colored a blue one especially for you. Tommorrow when the kids do the egg hunt I will remember all the easter mornings that you woke up to look for the eggs and who would find the golden one. You are in our hearts no matter where we go. We miss you more and more each day. Thinking of you and that great smile ! Love ya!


Mommy

Sunday, March 16, 2008 9:40 PM CDT

Shamrocks, Bag Pipes, a Parade and Irish Music just to name a few of the things that Michael loved about St. Patrick's Day. Today as we watched the parade and listened to the Piper's it brought me back to Michael's funeral. Amazing grace will never be listened to in the same way again. The Unicorn song was one that Aunt Sue and Mrs. Czuba got Michael to know all the words and motions to . So yes even on a simple St. Patrick's Day- the heartache and pain grow deeper. Michael and Pop loved to Celebrate the day!. Today we celebrated like they would have.
On Tuesday, our sweet friend Harrison who passed away on February 17- would have been celebrating his 9th birthday. Please remember his family in your prayers as this time is very difficult for them. Gina has asked to celebrate Harrison 's Life with a green cupcake in honor is his birthday, if you too can do that to honor a life that will never be forgotten please do so.

Until next update be well.

Sharon

Tuesday, March 11, 2008 9:02 PM CDT

Spring is in the air, baseball is right around the corner. This was Michael's favorite time of year. This year WOULD have been full of excitement, preparing to go to high school and graduating. He is missed so much and the days are so hard. Those of you who knew Michael know that LIFE was real important. He lived his life to the fullest and even on the darkest days he often worried about other patients. I think he sometimes forgot he was a patient too.
The little stories that are still told about Michael truly show what an inspiration he was and still is to so many .
A local Bayonne firefighter is giving the gift of his bone marrow this week at Hackensack Hospital to a patient in need. Michael's story inspired him somewhere along the way. So I can only pray that his marrow will help save a life. Now that flu season is almost over- it is real important to help the blood banks that suffered this winter with shortage of donors. If you feel the need to help someone or want to do a kind deed- GIVE BLOOD!!! You may help safe a life. The best part of all is it's from your heart and it doesn't cost a thing.
Michael had many generous blood and platelet donors.
Our dear friend Marion at the blood bank at MSKCC has retired- she did a wonderful job coordinating Michael's direct donors. Think about it- every drop counts!

Monday, February 18, 2008 9:57 PM CST

It is with much sadness that I write this entry this evening. Many of you through Michael's journey learned of our sweet friend Harrison. Harrison was called home to God on Sunday evening. Everyone is extremely devestated by this loss.
My boys adored Harrison, and treated him as a little brother as you can see in the above picture. I am sure that Michael guided his little buddy and embraced him. Knowing the two of them, they are fishing and building legos already. Boys you are both such an inspiration to many .Harrison and his family are a very special part of our lives and he will truly be missed. Please pray for his mom and dad, grandma and grandpa and the rest of the Nichols family. May Harrison's light continue to shine on us. We love you Harrison! When I look for my lucky star at night- I will now have double!

In Sadness
Sharon

Saturday, January 26, 2008 10:47 PM CST

I would like to share with you a poem that Michael's friend Jonathan wrote. Jonathan was a really good friend to him and spent some happy times at our house. All of the kids really miss him and truly never have forgotten their special times spent with him. As they all prepare for high school, Michael's memories will go with them . Rings were ordered, pictures were taken. The next few months will bring more heartache knowing that he should be part of the Class of 2008.
I thank Jonathan for giving this to me and allowing me to share with all of you.


"I Miss You"
Two years have passed since we said "Goodbye"

No one really understands
All the feelings that I hide inside.
Because I miss all those times
You were by my side

I know I shouldn't ask God the Question "Why"?
Why did you take my brother, my friend out of my life?

I get on my knees and fold my hands
and pray to understand the reason why

I realize then, that one day
I'll see your smiling face
We'll just be meeting in a better place.

By: Jonathan D. ( they always teased about being brothers because of the friendship they shared)


The following poem is for all parents whose precious child in an Angel Above
how their love is with us daily but are missed more than one can imagine.

A Valentine Sent To Heaven

Angels come swiftly, hurry to
our side
Carry our hearts back with you, to our children in heaven now reside.
Carry them gently, handle them with care
And take them to their sides, and gently lay them there.
Whisper to them of our love,
and our longing hearts.
All our lonely aching while we are apart.
Hold them gently to you, and let them see our love
Let them see this, our
valentine to them above.
Reassure them of our love, that it is still the same
And gently hold us when we cry, when we hear them whisper our names.
Let this exchange of love be our valentine.
And whisper to them that our love will stand the test of time.
Show them the memories are safely held inside
And with us they will always abide.
Let them see this day, a day filled with our love
As we shed our tears, and whisper their names, to our Valentines above.

Thursday, January 24, 2008 9:12 PM CST

On February 2, 2008 Frankie will take the plunge in the frigid waters of Long Branch, NJ. It all started last year on Frankie's 19th birthday, he decided to plunge In Loving Memory of his brother Michael. Fundraising, wearing a costume and adreneline pumping he ran into freezing ocean waters. He has decided I think that this will be an annual event. He has even recruited a few more people to join him; Uncle Brian and Aunt Lisa and some of Frankie's new Sig Ep guys from Rider University. This will benefit Camp Sunshine in Maine a place that Michael enjoyed so much many times and Frankie holds many memories in his heart of camp. It falls on the same weekend as his birthday again , so we will celebrate ALL that Frankie has to offer and celebrate Michael's life as well. I am so proud of Frankie as he was chosen to be the Charity Chairperson for his Fraternity.
If anyone would like to make a donation to this worthy cause- it will send an ill child to camp for a week this summer. You can mail it to our home address or log onto
www.campsunshine.org and click on AJ NEw Jersey Plunge, then donations and make a notation in the box who you are donating for.
Please pray that the weather is not too cold and that all plunging remain safe.
Also, please continue to pray for our dear friend Harrison who is amazingly doing better this week. Keep those prayers coming.

Saturday, January 19, 2008 10:55 AM CST

Praying today for all of our Neuroblastoma Angels and Warriors. Nine years ago today our Sweet Angel Michael was diagnosed with NB. The day, the details even down to the weather all come back on these reminder days. I will never forget the love and support we received from Tommorrow's Childrens Institute and the love and care from our pediatrician Dr. Bokari. I would give anything to have Michael back. I ask you all to pray for two very special little boys that were part of Michael's life at the hospital: Harrison and Luke. Both of these young boys have been fighting NB for such a long time. Their courage, bravery is such an inspiration to all. Harrison and his family are extremely special to us and they need lots of love and prayers sent their way.
On Monday, January 21 Sage and Company in Bayonne will be hosting a Cut A Thon benefitting the National Childhood Cancer Foundation. Cuts will be $15.00 all day.
A cure needs to be found so these children no longer have to suffer from this awful beast.

Sharon

Monday, December 31, 2007 1:36 PM CST

This day always brings me back to December 2002. That afternoon Michael was given back his stem cells during transplant a day that gave him a new life. Today as I reflect on that there is another new life to deal with. A life in eternity...... I thought we would be able to celebrate New Years Eve forever with thanks. Today it's all about memories.
My hopes for all of our families and friends is that everyone is able to find peace, love and healthy 2008.

Monday, December 24, 2007 11:43 AM CST

Dear Family and Friends,
Just wanted to wish all of you a Blessed Christmas. May all of our Angel parents find peace and strength to get through the day without our dear children and may those who are receiving treatment be able to find some joy in the spirit of Christmas. Everyday is difficult without our children, even though their spirits continue to be with us and their everlasting love that lies in our hearts, but the physical body is missed so much.
As I went to a dinner last week for bereavement group , Anthony accompanied me as some of his group members were there as well , we ended the night with a balloon release.
I didn't look at Anthony's message to his brother as I felt it was his own personal thing. Well his balloon went up a little early in the lobby of the hotel and someone brought to my attention what his message said, I looked up and my heart became even more sad as I read "I miss you Michael, I just want to hug you and hear your voice"
We all hurt deep inside, even though sometimes the outside looks happy.
Merry Christmas sweet little boy, you are loved and missed.

In peace,
Sharon

Sunday, December 2, 2007 9:41 PM CST

The first snowfall of the season brings back memories of 2005 of the Winter Wonderland that Michael's school did in his memory. Each snowflake is unique as are all of our Angels and Warriors. Tonight Michael's Award was given out at St. Mary's for Competitive Spirit and two young 4th graders, a boy and a girl who were well deserving received it. Oh how I wish Michael was the one still playing.
This week Frankie and Anthony wer recipients themselves of some very well deserving honors. Frankie was accepted to Pledge into the Fraternity of Sigma Phi Epsilon and was also welcomed into the History Honor Society. His group of fraternity brothers had the highest GPA of the 3 groups pledging. Way to go Frankie!
Anthony was the recipient of the "Sportsmanship Award" for his team. This is the last season of play for him for Pee Wee's. Great job Anthony- even with an injured foot he managed to play.
This past Friday, Ferris High School held a concert and the proceeds were donated to The Ronald McDonald House in Michael's Memory. RMDH was a bigh part of our lives. Not only in NY but Philadelphia and Texas as well. Thank you to all who contributed.


In Peace and Love
Sharon

Wednesday, November 21, 2007 11:08 PM CST

Just wanted to wish all of our family and friends a blessed Thanksgiving. Please remember those families who may be in the hospital tommorrow and those who are undergoing current treatment. I have found the past two years alot more difficult at this time when everyone is preparing for the holiday and getting through it to start preparing for Christmas. My phone call to the local florist to order a grave blanket makes me feel terrible. They always do such a beautiful job in their creation but I'd rather be buying the latest cell phone or the pair of sneakers that are in style as most moms of a teen will be doing. I am grateful to have Frankie home for the weekend and Anthony here but that one piece of my heart remains broken forever. I am so proud of what the boys have both accomplished so far. Frankie is working hard on his Freezing for a Reason and also waiting to see if he was accepted into fraternity.
Anthony received a good report card this week and also volunteered to serve Thanksgiving dinners to one of the grammar schools in the next town.
Happy Thanksgiving Michael, we love you and miss you!

Saturday, November 10, 2007 4:13 PM CST

Last evening was the annual Cal Ripken Awards Dinner. In 2005 two gentlemen Bob and Joe DeChario( founders of the league) decided to re-name an award that was established In Memory of their dad to "The Michael Romano Sportsmanship Award". This year was the third recipient of the award and one so deserving. The first year twin brothers received it, last year a young lady in the league and this year a really nice boy from a sweet family. Thanks Bob and Joe for continuing to keep Michael's spirit alive in Cal Ripken. The Field of Dreams was something that gave Michael motivation for a few years.

Sunday, November 4, 2007 8:59 PM CST

Today was the New York City Marathon. As many of you already know, Fred's Team is a team that benefits the Pediatric Research Department at MSKCC. Many of the doctors and nurses train for months to take part in the 26 mile run through NYC. As I watched the race today in front of the hospital with my dear friend Gina so many thoughts raced through my head. I remembered the first marathon we watched with Michael in the freezing cold. There were so many reminders of Michael today..his two doctors Kushner and Kramer and many of the wonderful nurses that took care of him, Linda, Lindsey, Rachel and Aimee gave it their all as a part of Fred's Team. Congratulations to all of you for a job well done. Yes Michael, you were there in Spirit with us as always. We love you buddy and miss you so very much

Love
Sharon

Thursday, October 25, 2007 11:22 PM CDT

As the day started today it reminded me of the rainy, stormy day that Michael was put to rest two years ago. Michael was buried on my birthday which makes today somewhat even more difficult. He along with his two brothers are truly the best gifts God could have ever given me.
I do beleive that today Michael was with all of us watching over and guiding and protectingas he is everyday. Our very dear friend Harrison who is struggling with Neuroblastoma received some very good news tonight about disease that had shown a few weeks ago... it no longer is there.
Harrison, you are so brave my friend. Keep fighting!

Love
Sharon

Sunday, October 21, 2007 10:29 AM CDT

To everything there is a season and a time to every purpose under the heaven.
A time to be born...
A time to love...
And a time to be born to eternal life

It has been two years today since our sweet little boy Michael was called home to heaven and although it was much too soon I guess there is a purpose and a plan. Some days it seems like yesterday and others feel like a really long time. There will never be a minute of the day where he is forgotten.
Despite all of the pain Michael endured, he showed those around him smiles and laughter. Everyone that speaks of his memory always focuses on the happy times. Michael kept his pain very well hidden. So as you are out today think of something special reminds you of Michael. He is with us always as we carry him in our hearts forever.
We will have 12 noon mass for him and then probably go to the memorial tree in the park for a balloon release.
Yesterday as I planted some tulip bulbs and cleaned up around the tree two very special classmates of Michaels were at the park and decided to join in. Thank you girls.
Thanks to all who remembered our family this week with cards, calls and prayers. The comfort means alot. A special thanks to the friends from MCS who shared the day together. The young teens have so many hidden feelings. Their sadness was so hard to watch. I will share later in the week a poem that one of Michael's friends wrote.


Love and Sadness
Sharon

Friday, October 12, 2007 9:50 PM CDT

The next few weeks will be full of alot of emotion as the time approaches to Michael's two year eternal life anniversary.
The days of October 2005 can pretty much be revisited in my mind. Some days were good and some were not. There will never be a day that I don't think about Michael's smile, sense of humor, kindness to others and the warmth that radiated from his heart. As the weather is changing it is a reminder to plant the tulip bulbs in special places. Tulips were his favorite.
On Sunday, Anthony will march with school in the Columbus Day Parade and he will dress as "Christopher Columbus". Michael was Columbus a few years back and had the thrill of riding in a convertible along our main town street. Anthony is just thrilled to be doing this for MCS.
The Make a Wish Foundation is sponsoring a walk in Jersey City on Sunday morning, Anthony and I will join our friends The Profaci's and walk in Memory of Nicky and Michael.
Extra prayers are needed for an adult friend of mine who is struggling with brain metastisis. Please keep her in your prayers.
Our friend and hero, Harrison has finished his course of radiation and continues to battle the beast. Please keep him in your daily prayers as well.

Warmly
Sharon

Sunday, September 30, 2007 7:51 PM CDT

"We need not only a purpose in life to give meaning to our existence, but also something to give meaning to our suffering".

I was emailed the above yesterday from my 19 year old son who is away at college. We're all trying to find reasons for our suffering. We may not find those reasons now but I'm sure someday there will be an answer.
It was such an appropriate quote to mail being that today would have been my dad's 61st birthday. As many of you know my dad passed only 8 short months after Michael. This impacted greatly on my boys as he was a big part of their lives. So I told them to celebrate POP's life today by doing one thing that would make someone smile. My dad always smiled and was forever helping someone.
Well as it turned out Frankie was asked by a fellow Resident Assistant in another building to cover for him because he had an emergency and couldn't get someone in his own building to cover. As it turned out the boy's grandfather passed away. Graciously, Frankie took over for him.
We all have a purpose here on earth, whether it be a long time or short one. Our suffering here is only a short time...eternity with our loved ones will be forever.
Happy Birthday Dad! We miss you and Michael so much!


Warmly
Sharon

Monday, September 17, 2007 9:46 PM CDT

Happy Birthday Anthony! Tommorrow Anthony will celebrate his 9th birthday. Boy is he getting up there. Most of you who read this page probably remember him being pushed in the carriage around clinic in MSKCC and Hackensack. Well, he is still sweet as ever. He had his mini-golf party yesterday and he had lots of fun with many of his special friends. The two most special people, his brothers were missing from the party and that was Frankie and our sweet Angel Michael.
A friend reminded me how hard it is for her starting from this time leading up to October 21st because the last time she saw Michael was at Anthony's 7th birthday party. Beleive it or not he was rock climbing and a few days later went into the hospital never to return home.
Anthony will celebrate in school with cupcakes and Golf Ball Lollipops to keep with the theme of the weekend!
Look out Tiger Woods, here he comes.


Warmly
Sharon

Monday, September 10, 2007 6:44 PM CDT

Brotherly love is something that the boys will share forever. Labeling themselves as the "Boys of Summer" or "Romano 3" will be attached forever. Today as the full day of classes began and Anthony having the same classroom and teacher as Michael did in 4th grade, I knew he would be fine with such a fun, caring environment. He called me at work at 3:05 from grandma's cell phone with much excitement in his voice. He had a quick story to tell me. He said "Mom guess who's science book I got to use for this year?" Never thinking it would be Michaels. WRONG!! It was and no one had used it since Michael was in 4th grade in 2003. The printed name on the line he had written himself was there.
I was so happy for Anthony being that he was happy. I told him I guess Michael was with him once again as always. He said he teacher said the same thing. He couldn't wait to get outside to show his grandma and he even brought it home to show me although he didn't have any homework. With a lump in my throat tears needed to be held back because Anthony was so proud. The 3 muskeeteers will go on forever always looking out for one another and today I think it was Michael's way of saying HEY ANTHONY! I'm HERE
In another scenario, Frankie has a student in his dorm at Rider University building by the name of Michael Romano this year. Yes Michael YOU are all around us and we cherish every sign you send.

Taking a deep breath
Sharon

Tuesday, September 4, 2007 8:19 PM CDT

It's back to school time once again. Preparing the supplies and uniforms tonight for Anthony is kind of hard being that everything always was in duplicate for him and Michael.
Thinking back to 2005 their first day of school picture, the sun was shining as they hugged each other on the front porch. Tommorrow Anthony will enter 4th grade and will have Michael's 4th grade teacher Mrs. Aceti who he just loved and adored. They would have lined up in the same courtyard this year. As that bell rings at 8:50 a.m. tommorrow will once again start without our precious Michael. Last year when that bell rang I held my breath and ran into the car and when I got to work had a meltdown. As I watch those 8th graders it will be twice as hard. This will be the beginning of alot of added milestones that will never take place for Michael. The theme for the School is "Happy Feet" so there are tons of penguins all over the school. Michael loved penguins. So, already I know he will be so much a part of the school he loved ( Midtown Community), the friends he shared and the teachers he respected.

Warmly
Sharon

Tuesday, August 21, 2007 10:34 PM CDT

As twenty two months have passed by I still can't beleive some days that Michael is gone. Trying to find the strength somedays is often difficult. As school is about to begin in two weeks, and his two year anniversary will be approaching in October sadness fill my heart much more.
Will I be able to hear the bell ring the first day of school and know that Michael won't be with the eighth grade class? It will be extremely difficult.
In meeting with the moms from group recently and listenting to how long ago their children passed away and they still find comfort in going to group I truly understand. The past few months are harder than before and that seems to be the case with most in the two year loss time frame.
No matter how hard it seems to get through the day - I can always stop and think of Michael and his smile and I can smile with him.

We look at the night sky in the
quiet of darkness,
and they are never far.
Those we have loved and cherished
those who have changed our lives
in some small or profound way
are closer than we know,
because it is their light that shines
on our world.


Michael your light will always shine on us and when the days seem dark it is your love tucked in our hearts that will make it a bit brighter. We miss you buddy!!

AUGUST 25, 2007

This week joy, happiness and new life was added to our family. My sister, Michaels Aunt and Godmother delivered a beautiful BABY GIRL on 8/22/07 8lbs 6.6 ozs She is absolutely beautiful.
I know that Michael and my dad are her two special angels. She is truly our princess!!!

Saturday, August 11, 2007 8:58 PM CDT

Summer, Fishing, Yankees, Snapple, Swimming...all of Michael's favorite things during the summer months.
I walk by the pond at the county park that Michael spent his last summer just sitting for hours and fishing, there is so much peace and calmness no wonder it was a perfect spot for him. Frankie had two wisdom teeth pulled on Thursday and what song do you think was playing in the office as he arrived "Time of Your Life" I think that was the obvious that everything was going to be ok BIG BROTHER.
We are waiting patiently for the arrival of Aunt Sue and Uncle Jon's new addition to our family. What a special blessing it will be.
Frankie will be heading back to Rider in just about two weeks with a big year ahead of him. Keep up the good work Frankie!
Enjoy the rest of the summer

Warmly
Sharon

Friday, July 27, 2007 11:57 PM CDT

For those of you who continue to check the updates on the site, you probably have been following Anthony's baseball stats. Last night The 8 Year old Bayonne All Stars lost in the State Tournament. I am so proud of Anthony and what he put out in the past few weeks. His position of Catcher was a very important one and he did a darn good job. He also had another little job that his personality created for him and that was the team chant leader. What a great team he played with. With only a few days break, football starts.
Frankie completed his five week summer teaching at St. Peter's Prep - the high school he graduated from. He taught and coached students entering eight grade who chose to attend this Enrichment Program. He did a fine job and we are all very proud of him. The hard part was all of those boys were friends of Michael. Tonight at the graduation Frankie really felt the loss of his brother as he would have been one of the students he taught. Life will NEVER be the same for any of us- no matter how you look at it.
Please continue to pray for those special children in treatment like our friend Harrison.

Warmly
Sharon

Saturday, July 21, 2007 9:45 PM CDT

The days have been busy with baseball, Anthony is on the 8 year old All Star Team for the Bayonne Cal Ripken League.
Never does a minute go by that we wish Michael were here playing or watching with us. Today marks 21 months that he is gone. I've prayed to him so many times in the past two weeks to send some Angel luck onto his brother's team.
Time goes by but the love we have for him NEVER fades away.
I would give anything to still be riding to NY everyday, sitting in clinic for hours, running for his favorite lunch-Ceasar Salad. We miss ya buddy

Love
Mommy

Saturday, June 16, 2007 10:58 PM CDT

Happy Father's Day to all! To all the dad's who have their children you are very blessed to be able to spend time with them. To those who have ANGELS may you find strength and peace, know they are with you today and always.
Father's Day has a different meaning for me this year. It's the first one without my dad. Last year he was in the hospital and the last picture taken of him was with Anthony. I look at it every night. I'll never forget Anthony saying I'm going to fix POP's chair like he's a KING. Daddy you will always wear a crown in my book.
I know you and Michael will be celebrating the day in some way . Hopefully playing some Hold Em..


Missing my guys....Michael and Dad

Love
Sharon

Friday, June 8, 2007 12:09 AM CDT

HAPPY 13th Birthday Michael! You are loved, you are missed. Tonight we will CELEBRATE what you loved in June- Relay for Life. I know you are with us.
You are the greatest my little boy! Your smile follows us whereever we go!
Loving you bunches and thinking of you always.
You are the brightest shining star.

LOVE
All of US!!!!!!

MONDAY JUNE 11th------
Friday was definitely a difficult day to get through. I can't imagine what my boy would be at 13. I do know that he is still loved, still thought of by so, so many. The cards and phone calls all mean so much. Everyone's story of what reminded them of Michael that day or the signs some saw- Frankie heard Good Riddence on the radio in the a.m. and sent me a beautiful text message. I told him it was Michael's way of saying I LOVE YOU BRO!!!
I would like to share with you a special story if inspiration..
Alexandra, a friend of Michael from MSKCC who is a SURVIVOR did a remarkable thing in Michael's memory.
They were classmates at the hospital and became special friends. We went to dinner with them and they emailed each other lots. Alexandra wrote a story about Michael which her school published and copies were made.
The most impressive story was the one I heard yesterday from her mom. Alexandra has one leg amputated and she ran the 5K race for Memorial Sloan Kettering Cancer Center in NYC in Michael's Memory. She wore the shirt that we had at last year's Celebrate Michael's Life at Yankee Stadium Day. Alexandra you are wonderful.. Keep up the strength and positive attitude. I forgot to mention she also enjoys skiing in the winter YOu go girl ! We love ya and thanks for what you did.

Friday, June 8, 2007 12:09 AM CDT

HAPPY 13th Birthday Michael! You are loved, you are missed. Tonight we will CELEBRATE what you loved in June- Relay for Life. I know you are with us.
You are the greatest my little boy! Your smile follows us whereever we go!
Loving you bunches and thinking of you always.
You are the brightest shining star.

LOVE
All of US!!!!!!

Thursday, May 31, 2007 9:55 PM CDT

"Tommorrow" Anthony will be in the Annie production at school. He was picked a few weeks ago to play the role of the newspaper boy. It turns out that he now has 3 roles.
He is very excited. I am so happy for him and at the same time heartbroken. Most of the cast are friends of Michael's and the director, Mrs. Biscaldi was Michael's 3rd grade teacher. Anthony brings joy and smiles to almost everyone he meets. So "Tommorrow" I am hoping his laughter and fun will bring a smile to everyone who is there.
Frankie made the Dean's list for the second semster- What a great year he had. He has alot to look foward to.
He is going to his girlfriends prom tommorrow night.
I spoke to a friend at Tommorrow's Childrens Fund today and there was a conference a few weeks ago that Mark Messier spoke at, and she said that Marks speech had some focus about Michael in it. At the end they displayed a picture of Michael on the screen. In a room of hundreds of men, there was not a dry eye as they applauded Mr. Messier. It is so amazing that one of the greatest sports heroes of all time spoke about my hero, Michael. It's still hard to beleive that his life impacted so many people and touched their hearts forever. I can't beleive that next week, June 8th is right around the corner. This will be the second birthday without our sweet little boy. It certainly does not get easier. He is missed so much.
As the week goes on do your favorite thing, eat your favorite food and enjoy every minute of it, watch the Yankees, ENJOY LIFE as MICHAEL DID!!!

Warmly
Sharon

Sunday, May 13, 2007

Just wanted to wish everyone a very Happy Mother's Day. As it a very difficult day for those of us who have ANGELS. The empty space will never be filled. The joy our other children bring is very special but that missing link is painful. I cherish every memory that I have of Mother's day with "MY 3 SONS" and count my blessings to have Frankie and Anthony. They are the BEST!
_______________________________________
Just wanted to wish two very special Angels a Happy Birthday in Heaven today. Nicky and Christi, both treated with Michael in New York. May their families find the strength to get through the day missing these two awesome children. The Thomas' are in Ohio and Nicky's family is here in NJ and Anthony and I spent time with them today.
The boys sent balloons up so I hope there was a birthday party up above.
Anthony had an awesome baseball game today. He has also been asked to be a part of the play Annie Jr. at his school is so thrilled. He will have the role of the newspaper boy and Daddy Warbuck's chauffeur. We're so proud of him!

Warmly
Sharon

Saturday, April 21, 2007 10:15 PM CDT

18 months has gone by without you Michael. People say "Time Heals".. time will never heal the broken heart carried every day. I know that you are not forgotten, people who visit your grave and those who stop by your tree, those who send donations to your favorite organizations and those who send notes or email with a thought about you. YOU WILL ALWAYS BE REMEMBERED. We all miss you buddy.
I know there is a Heaven - because the signs we get are just so wonderful. If that's you letting us know, it makes me happy.
Love Ya Forever!!!!
Mommy

Sunday, April 8, 2007 8:51 PM CDT

Happy Easter Michael... As another holiday passes us by and you are not with us, sadness lies within. I know that you are free of PAIN from the NB monster and not spending it like the last Easter you had here with us. We miss you buddy and love you ever so much.
Opening day at Cal Ripken must have had some "Michael Magic" as Jared hit a home run and Doria won the game.
Your spirit is ALIVE my son, you are in the sun that shines;
the wind that blows and the flowers that bloom. Love ya Michael!!!!!

Wednesday, March 21, 2007 11:30 AM CDT

Words cannot express how much you are missed Michael.
17 months has been so long. Your smile still and always will warm out hearts. We love you little guy!!!!
You are with us wherever we go. As baseball starts and the weather is nice, the wiffle ball games in the driveway just won't be the same.
Love you today, tommorrow and always!!!!!!

Saturday, March 17, 2007 10:54 PM CDT

Happy Saint Patrick's Day Michael! It's a day you always loved to celebrate. I think my most memorable one was when we painted a green shamrock on the top of your head.
This was a big week for head shaving as I mentioned in the previous journal entry. Michael's dad shaved his head along with the baseball gang and Anthony got his Spring buzz cut.. that's as close as he will get to shaving. He looks sooo cute!!! So many of you have been so generous to all of these fundraisers. Each and every organization appreciates whatever help they can get. Pediatric cancer is often overlooked when monies are being distributed from funding. Just remember that no donation is too small.
They saying " It won't matter a hundred years from now what kind of car I drive or what kind of house I live in but I was important in the life of a child" goes to say alot.
These children need all the team support and effort to keep this fight going.
As I finish up this post for tonight I'd like to wish a very dear friend of our family, Harrison a HAPPY 8th BIRTHDAY! Harrison was diagnosed 5 years ago and is still fighting the NB beast. Please pray for him this week as he begins another week of treatment. We love you Harrison!

WArmly
Sharon

Sunday, March 11, 2007 5:25 PM CDT

March 14, 2007
As many of you are aware, this week is a big week for the St. Baldrick's Event. All monies raised go to cancer research through NCCF. The idea is that people fundraise money and then shave their head. This year Bobby DeChairo from the Bayonne Cal Ripken Baseball League will shave his head in loving memory of Michael and Anthony Costantino, another child from our town who passed away several years ago. Bobby has raised close to 3,000 . His event will be held at the Starting Point in Bayonne NJ. Thanks Bob for doing such a wonderful thing.


"Make yourself familiar with the Angels, and behold them frequently in Spirit; for without being seen, they are present with you"
St. Francis de Salle

I do beleive that OUR Angels are present with us all of the time.
As baseball season is beginning; practices are starting, teams already picked it is very hard not to think of how much Michael loved this time of year. If it was cold he would be all bundled up but still be on the bench.
I know that he's going to be watching each and every game that Anthony is playing this season.
Pretty soon the tulips will be blooming , the Yankees will have opening day and Michael's life will surround us with the many fond memories we have.
Michael loved the St. Patrick's Day parade and the UNICORN SONG.
We love you Michael, your spirit it with us each and every day. Some days are good and some aren't.
You are missed buddy.

Warmly
Sharon

P.S. Thanks to Caringbridge I am still able to update the webpage, and those still in treatment can keep their family and friends informed about treatment. I would like to thank the Faculty at P.S. #30 School for making a generous contribution in Michael's name to Caringbridge.

Wednesday, February 14, 2007 5:19 PM CST

Happy Valentines to the sweetest boy ever! We miss you and love you so very much.The memories of your precious smile lie within our hearts that ache so much.Sending you love, hugs and kisses ; today, tommorrow and always.

Saturday, February 3, 2007 8:37 PM CST

Happy 19th Birthday Frankie!!! We love you and are so proud of all you have done and are continuing to do. Especially today at 27 degrees jumping into the ocean. Yes, you did read this right... today was the Polar Plunge for Camp Sunshine in Maine..Freezin for a Reason. Frankie decided this was something he'd like to do on his birthday. He and Anthony joined about 80 other plungers on the beach in Long Branch, NJ. Anthony did the "Chicken Dip" which consisted of
sticking your feet in . YOU rock Anthony , for being so brave. The entire event raised over $30,000. The boys were so excited I think they are signed up for next year!
Thanks so all who donated for their cause and in Michael's Memory.Thanks to Midtown Community School Faculty, Horace Mann Faculty and Students, BYSA, Masonic Lodge and the Fire Dept Local II , PS #30 and many special family members and friends. The first time we went to Camp, Michael cried because he didn't want to leave, Frankie wants to go and volunteer there this summer. It has some very special memories for us. Thanks again and we'll keep you posted on next years event.

As for tommorrow will it be Bears or Colts? Anthony is predicting the Colts. May the best team win

Warmly
Sharon

Sunday, January 21, 2007 8:37 AM CST

Today marks 15 months that Michael is gone. Some days are good and some days are bad. I recently spoke to another parent who lost a child in a car accident and instead of thinking how long the child is gone, think of it as how many days closer to eternity we are. I don't know how much that thinking will help. Michael is truly missed by everyone, everywhere.
On Monday, January 15th Sage and Co, a local hair salon in my town did a fundraiser for National Childhood Cancer. They started about years ago when another child in our town passed away from cancer. His mother became involved and they've been doing it since. She charged $15 for a cut and 3 stylists cut over 110 people. They also had raffle chances and the stylists donated their tips back. Thank you Josephine for working together with Marie and Betty to make this day such a success. As I was leaving at the end of the day "Time of your Life" played on the radio. I don't hear it too often so I'm sure Michael was with us knowing what was going on.
Frankie and Anthony are doing well. Frankie made the Dean's list at Rider and has gone back for the second semester.
Anthony is finishing up basketball and getting ready for baseball.
On February 3, (Frankie's 19th Birthday) the boys will participate in a Polar Plunge in Long Branch NJ to benefit Camp Sunshine in Maine. Frankie is very excited about this and wrote the most beautiful email to his friends and college classmates for Freezin for a Reason Pledges!
Anthony will do the Chicken Dip (just sticking in a toe or two) The teachers at Midtown School have graciously donated to sponsor Anthony.
Yes, all of this is good. But it would be much better to trade it all in and have Michael back with us.
I will keep you posted on the plunge. If you are interested in donating to the boys you can visit www.campsunshine.org
and click on NJ Polar Plunge and it will link you to donation page where you can put their name.
Wish them luck!

Sharon

Sunday, December 31, 2006 2:31 PM CST

Four years ago today our sweet little boy was given his stem cells back, a transplant that we thought would give him a new life..one that would last forever. There are lots of memories that go along with transplant, some good and some bad, like the terrible mouth sores and vomiting.
Here we are four years later and still Michael has moved on to a new life. This life is forever...ETERNITY.
Michael loved New Years Eve, he was a night owl most of the time anyway. He told me that day that "I hate this disease, I'm going to put it in a can and squish it and send it to Mars; I beat this disease twice and I'll do it again"
We all hate this disease, so I ask that you pray for the families going through treatment now and for each newly diagnosed child and their families that somehow, some way a CURE will be found. I wish the Cure was here already.
May you all be blessed with health and happiness in the New Year.
We love you Michael with all of our hearts!

Miss you bunches and bunches

Warmly
Sharon

Sunday, December 24, 2006 7:05 PM CST

To Our Beloved Michael,
Our hearts are sad that you are not here with us. You are in our heart, mind and soul. We carry you with us wherever we go. The tree is up with all of your train ornaments and your stocking is hung.
I know you have a special Angel with you this Christmas. We miss you and POP so much. Take good care of each other.
Know that you are loved by many and that your memory has helped other families during this holiday season.
May you watch over us, pray for us and shine on us.
You are the greatest kiddo!!!!!

Love,
Your Family and Friends

MERRY CHRISTMAS IN HEAVEN.......

Sunday, December 17, 2006 2:27 PM CST

CHRISTMAS ALWAYS SEEMED TO REVOLVE AROUND THE HOSPITAL FOR OUR FAMILY. BACK IN 2000 WHEN MICHAEL DID HOT ANTIBODIES IT WAS CHRISTMAS TIME, IN 2002 TRANSPLANT WAS SPENT INPATIENT FOR CHRISTMAS AND IN 2004 WE CAME HOME JUST DAYS BEFORE CHRISTMAS FROM TEXAS. BECAUSE OF THE TIME SPENT IN THE HOSPITAL, MICHAEL ALWAYS HAD HIS OWN NATIVITY SET. THIS YEAR AS IT WAS VERY HARD AGAIN TO TAKE IT OUT OF THE BOX AND DISPLAY IT, I PLACED IT IN OUR LIVING ROOM AND MANY ,MANY MEMORIES FLOWED. MY MOM ASKED ME ONE DAY LAST WEEK WHERE I GOT IT FROM AS I JUST WALKED IN THE DOOR AND AS I STOPPED AN ANSWERED HER I SMELLED THE COLOGNE MICHAEL WORE. ANTHONY DIDN'T HAVE IT ON AND HIS BOTTLE OF IT WAS NO WHERE NEAR US. SO I TRULY BELEIVE THAT WAS MICHAEL'S SIGN OF LETTING ME KNOW HE IS AROUND. I'VE RECEIVED MANY CARD FROM ANGEL FAMILIES AND WE ALL SEND THE SAME MESSAGE- OUR CHILDREN ARE NOT FORGOTTEN, NOR WILL THEY EVER BE. WHETHER IT'S A PICTURE OR THEY WAY WE SIGN THEIR NAME , THEY WILL BE A PART OF US ALWAYS. AS THIS HOLIDAY TIME IS DIFFICULT WE KNOW WE ARE NOT ALONE. THIS WEEK WAS OUR HOLIDAY DINNER FOR BEREAVEMENT GROUP AND CLOSE TO 250 PEOPLE WERE THERE. UNFORTUNATELY, IT KEEPS GROWING.
MAY YOU ALL FIND PEACE AND STRENGTH THIS HOLIDAY SEASON.

WE LOVE YOU MICHAEL YOU ARE MISSED SO MUCH BY FAMILY AND FRIENDS!

IN PEACE,
SHARON

Thursday, November 23, 2006 5:52 PM CST

As we all give thanks today for our family and friends and the gifts that God has blessed us with, we also remember those who are not with us physically but are with us in Spirit.. Michael we love you and miss you.. Pop, we miss you and pray that you are together watching over us.
We continue to pray for those in treatment, those who are homeless and less fortunate.
Thank you family and friends for always being here in the toughest of times.

Happy Thanksgiving
Sharon

Tuesday, October 31, 2006 9:03 PM CST

As Halloween has come and gone it was very hard once again to be without OUR SWEET MICHAEL. His costume from last year is still in the bag in my room unworn. He loved Halloween!
As I drove home from work in a hurry to get to ANthony - who was UNCLE SAM for Halloween I felt so sad that it would just be the two of us. When I got to my mom's Anthony ran down the street all excited- he said "Look Mom what's on my hand" I looked down and there was a Ladybug :). We seem to see them at the right time and right place. It made both of us smile. Anthony's routine had changed and he really didn't want to go around to too many houses. I'd like to share a poem that Michael's best friend Samantha wrote:

MEMORIES

My best friend was Michael
We had so much fun
The best times we had
Were swimming under the sun!

We loved Hallowen
With all the tricks and treats.
We hated the pennies
But just loved the sweets!

We also loved baseball,
It was our favorite time of year
Both huge Yankee fans,
So dedicated and sincere

Things have not been the same
Since he went away
But there's one place.. my heart,
And it's where he'll always stay!

Thank you Sam for this wonderful tribute to Michael.
As we approach All Souls Day on Thursday please remember and pray for all of those who have been called into God's hands young and old.

Warmly
Sharon

Friday, October 20, 2006 10:53 PM CDT

Today marks ONE year that Michael became an ANGEL. A day that I'm sure we all remember like yesterday and will continue to remember for years to come. As hard as it is for all of us, I can see Michael smiling down on us. True heartache does exist and it hurts. At 12:12 a.m. tonight I lit a candle and said a prayer. Anthony was sound asleep on the couch and Frankie had just come in just a little while before. Both of the boys miss their buddy so much. We all miss him. The only comfort is that someday we will all reunite and live for eternity. Many of you have expressed what you will do today in Michael's memory and it really means alot to hear that from New Jersey to all over the U.S. Michael will be remembered.
There is so much to remember about such a special boy.
His smile, his humor, his endurance, his frienship, his bravery, courage and his voice. I sure so miss hearing his voice. I could go on for hours and hours.
The boys and I will go to mass in the morning and then we will have a Memorial Tree Planting at the park. It won't be an easy day. I'd like to at least be able to remember all of the good times shared with Michael. Frankie will be going into New York to see a play for school and Anthony has a basketball and football game tommorrow. Where ever we go each and every day Michael is with us and will always be with us.
WE LOVE YOU MICHAEL AND MISS YOU SO MUCH!!!!!

October 22, 2006
The picture above is the tree planted in Michael's Memory yesterday. I was so proud of Frankie and Anthony - they truly did a wonderful job in remembering their brother. They will always be "The Boys of Summer" So many parts of Michael's life were represented yesterday at the park: family, friends, Bishop Donato, teachers, coaches and even a few strangers. The tree was blessed as we all were and continue to be to have Michael in our lives.
I thank all of you who called, emailed, sent cards or did your own tribute to Michael wherever you were.
In the weeks to come a Memorial Marker will be permanently placed under the tree. Anthony painted the blue stone under there now.
It seems to get harder as time goes by and we struggle to get through each day.
I try to think of Michael's smile and how he would want us to be Happy!!

Warmly
Sharon

Monday, September 18, 2006 10:20 PM CDT

"No matter where life takes you-Always keep swinging"

Today as we celebrated Anthony's 8th birthday, actually all weekend I should say we sure have learned the hard way what a true HERO really is. Anthony took some friends to the movies on Saturday to see Everyone's Hero.
Children fighting cancer, children losing the battle and the siblings on this journey..that defines HERO.
The above quote reminded me so much of Anthony when I saw the billboard at the movies. With all that he and Frankie have gone through in their lives they keep swinging. The past two weeks have been a bit of a roller coaster ride. But we're getting through it.
Anthony was also lucky enough to be invited by a classmate to the Yankee /Red Sox game yesterday.Both boys enjoyed the game along with their dads.
As we celebrated all weekend I know Michael was smiling down on Anthony. 8 was Michael's favorite birthday. We all miss him so much.
In eight years Anthony sure has grown alot. Happy Birthday Anthony, you are loved by all. Keep smiling.

Please continue to keep in your prayers Christi from Ohio.
Christi is a NB patient who sadly about to join the ANGELS. Please pray for her family.

Pray also for the boys Grandpa Romano who is in the hospital recovering.

Warmly
Sharon

Monday, September 18, 2006 10:00 PM CDT

"NO MATTER WHERE LIFE TAKES YOU --- ALWAYS KEEP SWINGING"

Today we celebrated Anthony's 8th birthday, actually all weekend he celebrated. Donuts at school, balloons, dinner, cake and friends. Anthony chose to see EVERYONE'S HERO on Saturday with his friends. We sure have learned the hard way what a true hero is.
Children fighting cancer, children losing the battle...they are HEROES. We also learned that the SIBLINGS in this journey are HEROES too. They have shown their own bravery and courage. The above quote from the movie struck me so much of how Anthony's life really is. In eight short years he has been through so much.He's known cancer since he's a baby. I think it was perfect for him to chose that movie to celebrate HIS day. With all he and Frankie have been through in their lives they keep trying. Somedays aren't the easiest but we all try hard to get through it. The movie was about a boy who sees someone steal a bat from the Yankee locker room which belonged to Babe Ruth. As we celebrated this weekend, we also missed our Hero. I'm sure he was smiling down as Anthony celebrated with his friends tonight. Michael's favorite birthday was his 8th. Turning 8 on the 8th was a big thing to him. The past two weeks have been very emotional and I'm sure will continue to be as we are approaching the 1 year anniversary next month.
I thank God for the wonderful boys he gave me. In eight years Anthony sure has grown alot. From the baby in the stroller going to clinic to a charming little boy who now owns a Firefly cell phone.Yes, he has grown.
Happy Birthday Anthony, you are loved by all. Keep smiling!

Please continue to keep in your prayers tonight our dear little friend Christi from Ohio. NB has taken over her body and she is about to become an ANGEL. Bless their family as they struggle through this.

Send Harrison prayers for some white cells. Hopefully, his treatment will bring him back to full recovery. GO HARRISON.

And for the boys Grandpa Romano who is recovering in the hospital this week- pray he'll be home soon .

Warmly,
Sharon

Thursday, September 7, 2006 10:04 PM CDT

All of the "FIRSTS" are so very hard to get through. The start of school was always exciting and fun for us. This year was just too different. Because Michael loved back to school supplies and I could not shop without thinking of him , we bought what I would have for Michael and gave it to an underprivledged child. Keeping Michael's spirit alive is so very important.
I was very excited this week for Frankie going off to college and Anthony starting 3rd grade. Where did the time go? Anthony was so happy to see all of his friends on Mrs. Brown's line yesterday morning. He looked so handsome in his new uniform. I will post a picture shortly.
Hurrily I left him to get to work, as I was going to my car the bell rang in the front courtyard. Last year at this time we were thrilled that Michael was starting school after having a super summer. He was first on the line. I remembered what Ms. Lipinski emailed me later on that evening " It was a pleasure to see Michael's smile this morning, he talked with all the kids and fit right in like he was never out". I wish that was still the case. Seventh grade would start without him. It was truly a sadder morning than usual.
On Sunday when we were exiting the convocation at Rider with Frankie the Green Day song "Time of your life" began playing. We have labeled that song "Michael's Song. I could only say to Frankie that MICHAEL WILL BE WITH HIM.
We love you MICHAEL!

Special prayers are needed as always for our dear friends.
Harrison has begun treatment again after last weeks scans show reoccurence of Neuroblastoma. I ask that you send him love, light and positive thoughts.

Our friend Christi from Ohio is fighting so hard. Her disease has taken over her body causing her family to make the decision to stop chemotherapy and try to maintain her pain.
These children like Michael, are such inspirations and heroes. May they all be blessed in some special way.

Love
Sharon

Monday, August 21, 2006 8:42 PM CDT

I have been thinking of an update for several days now knowing that today is Michael's 10th month anniversary. Sadness fills our hearts everyday when that marker hits for another month the pain goes even deeper. The pain strikes me today that for the rest of our lives we will be marking the anniversary of Michael's passing. Something I NEVER wanted to have to do.
We celebrate his life and his memories and the love we have in our hearts for him. It's not the same as having him here to joke with, give a hug to or cook his favorite meal. Anthony and I celebrated Michael today with his favorite dinner dish. Ten months is just way too long already.
We often see ladybugs in special places. Today after Anthony's practice he said "Mom look, I glanced on my shoulder and a ladybug was crawling on it. It gently flew away. We always know that is our sign from our precious little boy. We love you Michael and miss you dearly! You are with us wherever we go...

Tuesday, August 15, 2006 7:30 AM CDT

The Alex Lemonade Stand in memory of Michael was a success. As I don't know the total amount raised as of yet, but I do know that the support from the community of Tuckerton was there. The children at the school also made crafts that they sold and some baked goods. Next to the school was a car wash that when people exited they supported the cause as well. One woman made her donation and passed on the lemonade she said " I'm just here because it's such a good cause" Thank you all at Coastal Learning Center again for continuing to keep Michael's Memory alive. As a parent who lost a child I often think that my child will be forgotten by the outside world. Last night I realized that everyone remembers in their own way. The photographer that took the Cal Ripken Basebal Pictures told me that she noticed that some of the kids who purchased trading cards listed Michael's name as their Favorite Pro Player. That really touched my heart and meant alot to me. So thanks boys, your teammate will always be with you.
As I see Michael's classmates at the park practicing for football I feel so sad. It's amazing how you notice how tall they got and how mature they are getting. Anthony commented that Michael will never go to high school.
It's hard enough that I won't be sending him to 7th grade this year. WE LOVE YOU MICHAEL AND MISS YOU WITH ALL OF OUR HEARTS!!!!

Thursday, July 27, 2006 7:10 AM CDT

As many of you know there is a legacy left behind of Alex Scott and her lemonade stand. Alex was 4 years old when she set up her first lemonade stand on her front lawn.
For the next 4 years she annually held her stand for PediatricCancer Research. On August 1, 2004 Alex passed away after 7 1/2 years of treatment for Neuroblastoma.
As of this year 6 million dollars has been raised in her name benefitting hospitals and doctors for research.
Alex was treated at CHOP in Philadelphia and that's where we share the bond as Michael was treated there as well.
On August 10 and 11th - ALEX's LEMONADE STAND in loving memory of Michael will be held at THE COASTAL LEARNING CENTER, 420 Main Street, Tuckerton NJ from 10 a.m - 12 p.m.
The Coastal Learning center is a school that my cousin works at and the approached her with the idea.
I hope that it is a success. If you are in that area on those days feel free to stop by. If you would like to donate to the cause click onto www.alexslemonadestand.com and follow the link to donate now.
This little girl , like all of our children has touched the hearts and lives of many. Hopefully the fight will continue so that someday there will be a CURE.

Anthony is on a cruise this week with Grandma and Granspa Romano. He will be returning on Sunday. Boy do we miss him bunches. He will start Football practice this week as well. GO ANTHONY!!!
Frankie is getting ready for college. September 3rd he will officially check into RIDER UNIVERSITY.

Enjoy the rest of the Summer!!
Sharon

Friday, July 21, 2006 9:56 AM CDT

Thinking back to last summer we had such a great time. I truly beleive that God knew the plan for Michael in giving him fun times. We fished almost everyday at the pond. It gave Michael a sense of peace and he found tranquility there. This time of year was Michael's favorite. Summer food, baseball, swimming and going out on the boat. Last week at the boardwalk Anthony had so much fun on the rides, it broke my heart that he had to ride the Crazy Frog alone and Moby Dick( that was Michael's favorite. Anthony said that Michael loved to go on these rides, the faster the better- they would both come of laughing so hard.
Today as it is 8 months since our dear Michael passed away
our hearts are aching and broken. Our lives are changed forever....incomplete.

In sadness
Sharon

Saturday, July 15, 2006 10:12 PM CDT

This past week has been very difficult. Adjusting to not having my dad around or POP for the boys to hang around with. Today while visiting the cemetary, the cutest little brown bunny was hopping around the graves. It resembled a stufed one that my dad put at Michael's grave. The real one must be the one that nibbles at the sweets that we leave; Michaels favorites. Lots of ladybugs were seen in some of the oddest places too this week. Several on and in my car.
Beautiful butterflies also surround the gravesite as well.
I take them all as a sign from my beautiful little ANGEL.
My nephew's 5th birthday is tommorrow and even at that age they sort of understand HEAVEN. He actually put Michael's name on the invitation and told us that Michael is always with us everywhere we go and he is coming to my party.
Children have a beautiful concept of what Heaven is. I always think of Michael as happy. He's always smiling in my thoughts. Please continue to pray for all of our friends in treatment and for those Angels who celebrate their Eternal Life Anniversary this month.

Warmly
Sharon

Thursday, July 6, 2006 7:03 AM CDT

It is with great sadness that I write that our family suffered another great loss this morning. Frankie, Michael and Anthony's Pop Smith died this morning at 5:35 am. The boys adored their POP and he loved them just as much. It is now another journey for all of us to get through.
He is no longer in pain or suffering. I am sure OUR ANGEL MICHAEL was there to comfort him. How unfair this disease is.
I thank all of you who have supported us the past few weeks with prayers.

In Sadness
Sharon

Tuesday, July 4, 2006 8:53 AM CDT

Even though today isn't the biggest holiday for most to celebrate, it is another holiday that Michael enjoyed. Last year we watched the fireworks over the New York Harbor with our dear friends the Nichols at their apartment. The boys had sparklers and glow sticks. Lots of fun was shared.
Five years ago today our dear family friend Dom , was put into a coma while off duty and trying to be a good samaritian during a dispute over fireworks, five years this week Dom passed away as well. As my Dad's condition worsens this time of the year once again seems so difficult. My children are faced with the fear of once again losing someone they love so dear and my siblings and I and my mom are struggling to be strong and watch such a genuine human being slip away.Please continue to pray for my Dad that he will be comforted with peace and no more pain.
So many of you have sent notes and messages and they all mean so much in this most difficult.

Warmly
Sharon

Thursday, June 22, 2006 9:21 PM CDT

I was present at the graduation ceremony tonight and THE MICHAEL ROMANO SPIRIT AWARD was presented to two female students. Both of these girls are extremely bright, energetic and have a fantastic smile. This award will be given out for years to come. No one will ever replace MICHAEL, he is surely one of a kind in my book. The eight grade class dedicated their Yearbook to MICHAEL.
As this school year ends there is so much to look back on. Being excited that Michael started school in September and feeling heartbroken that he's not here to be promoted to 7th grade. WE love you buddy and miss you so much
Please continue to pray for Michael's Pop- he is in ICU recovering from surgery which was done on Tuesday. CANCER shows no preferences when it strikes. I worry about Frankie and Anthony having to go through this again . I just don't understand how it can be so unfair. We shouldn't have lost a child in the first place and now have to continue to battle the beast again.
WArmly
Sharon

FRIDAY JUNE 23, 2006 UPDATE
Just to spread some good news for a change, I'd like to report that Michael's 2nd grade teacher and his home tutor for quite some time gave birth to a baby boy on Friday. RYAN "MICHAEL" was 8lbs,10 oz 21 inches . We wish their family all the best. Michael shared some fun times with their daughter who is now 20 months. She became part of his class instruction. WE love you all!!!

Wednesday, June 21, 2006 2:28 PM CDT

Today is eight months since our precious boy became an angel. Eight happened to be Michael's favorite number being it is his birthdate . The days are so long without him here. Everywhere you go, look , drive there are so many reminders of him. I just miss him being all of the places he loved. The other night a small vial of medicine fell from the shelf in the refrigerator, it was an unopened bottle of Michael's neupogen. Today I received in the mail a small heart that I painted while we were in Maine. It must have fallen off the boat that we made for the Wish Boat Ceremony. It had Michael's name and a baseball on it.
What were the chances that someone would find it and remember who it belonged to and even more so that I received it today. We were at camp 3 weeks ago. All of these little signs mean so much to us.
Tommorrow Midtown Community School will be giving out "The Michael Romano Spirit Award" at graduation. It will be presented to two children. They also dedicated a page in the yearbook to him. Thank you students for always remembering your friend.
He will be your forever ANGEL.

Warmly
Sharon

Sunday, June 18, 2006 8:29 PM CDT

Happy Father's Day to all Dads, especially those who have lost their children. May they find peace in their hearts and strength to be there for their other children.

Alot has transpired in the past week. Last Saturday a bunch of Michael's friends and family celebrated his birthday at Yankee Stadium as the Yanks lost to Oakland. The kids had so much fun and they day was celebrated just as Michael would have wanted them to. It was very hard on the other hand to be there without him. I am sure he was with us , by our side the entire day. WE love you MIchael and you have an awesome group of friends who love and miss you!!
Anthony's Cal Ripken Baseball Team won the Championship game on Saturday with a 14-0 winning season. The boys all played hard and it was well deserved. GO VALLEY NATIONAL!!!
Frankie started a summer job last Monday at a law firm . It's a good experience for him and he will be off to Rider University In September. He graduated on June 7th and was presented with an award at graduation. Congrats FRankie!!!
On a sadder note my Dad was diagnosed with Cancer last week. If I can ask all of you who prayed for Michael and still continue to pray for him , say a prayer for the boys POP. Cancer certainly shows no preference. No family should ever have to go through what we've gone through already and then have this added on top of it.
School will be out in a week and everyone sure deserves a summer break.

Warmly
Sharon

Thursday, June 8, 2006 0:03 AM CDT

If we could have a lifetime wish
A dream that would come true
We'd pray to God with all our hearts
For yesterday and you
A thousand words can't bring you back
We know, because we've tried
Neither will a thousand tears
We know, because we've cried
You left behind our broken hearts
And happy memories, too
But we never wanted memories
We only wanted you
(Author Unknown)

HAPPY BIRTHDAY IN HEAVEN OUR LITTLE BOY

12years ago today at 10:41 am ,our family was blessed with the cutest baby boy. The joy that he gave us is something that will never be forgotten.
As I write this journal with a broken heart I can think back to all of the good times and happy memories that were celebrated over the years. A birthday or two even spent in the hospital, but that never stopped Michael from having a party. Never did we think that the journey would be the one we are traveling today. Many people have expressed their wishes and prayers for Michael. Emails and phone calls and flowers in his memory. None of that takes away the pain we feel, but it does help to know that HE is remembered and that his life is being celebrated.
It will be very difficult to not have Michael here tommorrow to open a present or card. I'm sure he feels the celebration in his heart. He is and always will be in our hearts.
Time will never heal, as this scar is left in our hearts forever. Time will bring us closer to eternity and that will give us a lifetime with no end.
We love you Michael and miss you so much.
All of your friends miss you and love you and continue to make you a part of their everyday lives as well.
HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR MICHAEL- Happy Birthday to You!

Thursday, June 1, 2006 1:00 PM CDT

The month of June has always been so much fun. We always started a countdown to Michael's birthday on the 8th and then shortly after it was counting the days remaing for the school year. We are most certainly counting the days until the 8th. It will be much different than ever before and will continue to be that way forever. Michael will be 12 and we will celebrate his LIFE. The sadness is carried each and every day in our hearts. I think of every single thing that he loved doing, eating, going to and enjoying.
So as this week leads us to Michael's birthday and you want to feel a part of his life please think of him and maybe do one thing that HE enjoyed.
Here are they ways MICHAEL celebrated his life, his days, HIMSELF: White Cake with Vanilla Frosting, Pepsi Vanilla, Sour Skittles, Doublemint Gum, Sour Cream and Onion Chips, Chicken Francaise, Cesar Salad (No croutons ,extra dressing) ,Plain Lo Mein, a hot dog with cheese and sauerkraut ( nice combo huh!) ,Ramen Noodles, green olives, green bean casserole, Spaghetti O's, Sweet Potatoes, Steak with A1 Sauce,
Fishing at the Pond, Wiffle Ball, Baseball, Batting Cages,
Listening to Dave Matthews, Creed, Pearl Jam , AND 1 Clothing , XBOX , Adam Sandler Movies, Texas Hold Em, Mancala and THE NEW YORK YANKEES!!!!!!!!!!!
So if you find yourself enjoying any of the above next week stop and think for a moment about Michael. I am sure he is thinking, guiding and watching all of US!!

Thank you for allowing me to share one of the greatest gifts ever given to me :) MICHAEL

Warmly
Sharon

Sunday, May 21, 2006 9:55 PM CDT

Seven Months ago today our sweet little boy became an ANGEL.
WE miss him more and more as the days go by. Even though his spirit is alive and so strong, we would give anything to have him back. He is missed dearly by family and friends. It is comforting when people do talk about him or share something special about him.
Today Anthony remembered a story that I had totally forgotten about and we were able to share a laugh.
There are also those who never knew MIchael personally but just by reading about him they wish they had met the bravest,most courageous and inspirational child I'll ever know.
WE LOVE YOU MICHAEL!!!

Warmly
Sharon

Saturday, May 13, 2006 4:39 PM CDT

For the past seven years I was surrounded by moms who lost their children in treatment and I really never knew what to say to them when holidays and birthdays came around.
Know I can honestly say " I know how they feel"
It's not just Mother's Day that you feel bad, it's everyday. Everyday there is pain and heartache. In our circle of ANGEL MOMS we can cry together, talk together because we all share the same bond, the loss of our child.
So to all the MOMS who have an ANGEL, I wish you strength and peace to get through the day tommorrow. Our children are ALWAYS with us in our hearts and souls but it's not the same as being able to hug them, kiss them ,watch they play .
To all the moms who have their children with them to celebrate the day, enjoy each and every minute of them.
I came across this poem and I think it's appropriate because we really don't express our true feelings to those on the outside.

MY MOM LIES
Author Unknown

My mom, she tells a lot of lies
She never did before
From now until she dies,
She'll tell a whole lot more

Ask my Mom how she is
And because she can't explain
She will tell a little lie
Because she can't describe the pain.

Ask my mom how she is
She'll say "I'm alright".
If that's the truth,then tell me
Why does she cry each night?

Ask my mom how she is,
She seems to cope so well
She didn't have a choice you see
nor the strength to yell.

Ask my mom how she is
"I'm fine , I'm well I'm Coping"
For God's sake Mom, just tell the truth
Just say your heart is broken

She'll love me all her life
I loved her all of mine
But if you ask her how she is
She'll lie and say she's fine.

I am here in HEAVEN
I cannot hug from here.
If she lies to you don't listen
Hug her and hold her near.

On the day we meet again
We'll smile and I'll be bold
I'll say "You're lucky to get in here,MOM
With all the lies you told!"

THURSDAY May 18, 2006
Yankee Stadium without Michael is just not the same. The boys and I went to the game last night with our Bereavement group through the Tommorrows Childrens Fund and a special donor to the fund. We were bussed over and watched the game and they treated to dinner at the stadium. So when you think of TCF, not only do they provide for the patients; they continue to provide to the families grieving their children and siblings as well. THANK YOU TCF. Looking down from our seats I saw Michael's friend who works for the Yankees and it seemed like we should have been there talking to him, he still does call to check on the boys.
It was hard to hold back tears as the first inning started. But yet the presence of Michael was within.
For those of you who live in Bayonne , a video was made in Tribute to Michael's Life and the Christmas Tree decorated in his memory and all of the children diagnosed with cancer each year. It will be shown on the BEN TV channel in the upcoming week or so. Thank you Mrs. McMonagle, Mrs. Aceti, Mrs. Meile and the many others who worked so hard to create MICHAEL'S LIGHT
on video.
Three weeks from today is Michael's birthday. The anxiety is already beginning to build up. I am sure it will be an extremely hard day to get through. With the support and advice from other angel families we know we are not alone.

Warmly
Sharon

Wednesday, May 10, 2006 10:36 PM CDT

Anthony's First Communion went absolutely fine. We couldn't have asked for a more beautiful day. He was so happy and looked so handsome. It was very difficult to be without Our Angel as well. He should have been walking up with us when Anthony received the sacrament. I'm sure he was closest to Anthony in a very special way.
Thanks to all of you who helped make the day so special!!
I'd like to wish a special HAPPY BIRTHDAY to Michael's very close friend Jonathan. Hope you had a wonderful day!
Don't forget that the Blood Banks still need your donations. No matter where you donate you will be helping to save a life.
Continue to pray for all of our friends still being treated at the hospital and for those who have Angels as well, that we all may find strength and peace.

Friday May 12, 2006
Today is our friend Nicky's 8th birthday. He is a very special "ANGEL" to our family as well. Please pray for his family today as they are at a loss on this special day.

I'd also like to thank a very special 17 year old high school junior who took the time to remember all of the moms at the hospital and in my bereavemnt group. He is a Cancer Survivor for many years and he decided to make care packages for all of the moms because he realizes how much his mom sacrificed while he was in treatment. He wrote the most beautiful letter. He called his project "Moms are Marvelous". So to him and his family THANK YOU!!


Warmly
Sharon

Sunday, May 7, 2006 0:02 AM CDT

Today Anthony will make his First Holy communion at 12 Noon Mass, St. Andrew's Church. This is a very special day for him and he is truly excited. He surely deserves it.
When I think back to the past two years on our up and down roller coaster with Michael's treatment. I kind of had a feeling that Michael wouldn't be physically with us as Anthony celebrates the Sacrament and Frankie graduates in a month from today. Two big , happy celebrations and yet sadness will still fall. I know Michael will be with us in spirit tommorrow as he is everywhere we go. There are 16 children making Communion. One other boy lost a brother a few years back in an accident and another boy lost his dad on 9/11. The three boys and their families I'm sure were meant to celebrate together. There are five other masses to choose from and we all picked the same date.
The sun is suppposed to me shining and the skies clear.
I prayed hard all week to my special Angel that his brother have a beautiful day.
Anthony shared something so sweet with me on Friday.
He told me he likes when he practices at 5th Street field.
I told him I'm sure he does. It's new , and mostly the big kids play and practice there. His response " It reminds me of Michael" bless his little heart.
He did a wonderful job on the Radio Thon on Thursday. I was very proud of him.Thanks TCF for all of the wonderful things you provide to patients, on treatment, off treatment and those of us with Angels.

Warmly
Sharon

Wednesday, May 3, 2006 10:22 PM CDT

Tommorrow, May 4th Anthony will be representing the Sibling Bereavement Group of Tommorrows Childrens Fund at Hackensack University Medical Center. He is very excited about doing this. I admire him for his courage and bravery.
Tonight the group had a little party for the Intern Child Life Specialist, Greg. If you could see the smiles on their faces as they gave him cards and best wishes. He has been with the group for 9 months. The kids will really miss him!
Sadly, the group has added another sibling.
Anthony will probably air at around 2:30 pm on 660 AM Radio and I believe the YES channel. I don't know what the conversation will be. I do know that Anthony knows lots about the CANCER world. He was 4 months old when Michael was diagnosed, so Neuroblastoma and hospitals are all normal to him.
Michael was part of the RadioThon in 2000. I'm sure he will be with his little brother tommorrow.
Missing our little guy so much

Sharon

Friday, April 21, 2006 6:52 AM CDT

6 months, one half year, 182 days, 4,368 hours.
No matter how many ways you write it the loss is still here and it's painful.
I can't beleive it has been 6 months already. Life is so incomplete without Michael.
Everything aound us is such a reminder of how we truly miss you Michael. The ball games, the carnival, dinner time, the boardwalk, Jimmy Hot Dogs, the tackle store, even trips to the grocery store, music on the radio and the list goes on.. I know that you are with us in spirit every minute of each day. It's just not the same. Your smile, your voice, your laugh: if they could only be heard one more time.
We love you Michael and miss you dearly, our love for you willl remain in our hearts forever until we meet again.
Guide us and protect us SWEET ANGEL, you are our forever HERO.

Sunday, April 9, 2006 8:55 AM CDT

Opening day for the Yankees was on Monday and they won 15-3. I know they are going to have a great season. This time of year is Michael's favorite. BASEBALL SEASON! Baseball gave him the determination to get through so much. If he didn't play, he'd put his uniform on and cheer from the bench. I always admired him for that. Yesterday as the rain came down here opening day was scheduled for CAL RIPKEN MAJOR LEAGUE. It was cancelled and rescheduled for today.
Michael loved the field that was done over and played two seasons on, it is so difficult to know that he's not playing there. Anthony's team opens today and I hope watching him play can take away some of the pain. He's such a joy!
I'm sure Michael is playing . I'm not a poet but this little thought had come to my mind and because it's Opening Day I'd like to post it in HONOR of OUR HERO #2.

BASEBALL IN HEAVEN

Are you playing ball today son?
I'm sure you must be
Batting, Catching, Throwing
Making history
#2 on Your Back
Running with Pride
A TEAM FULL OF ANGELS
Standing by your side
God called YOU Home
To be part of HIS Team
You stepped up to bat
and hit a home run
I know you are smiling
and having fun
I'm in the game MOM
So please cheer me on
I'm safe at home plate
My team has just won
There's baseball in HEAVEN
Please don't worry about me
I'm with the GREATEST TEAM
of players there ever could
be!

Tuesday, March 21, 2006 7:17 AM CST

Today is 5 months that Michael left us . Not a minute goes by that we don't think of him, the love that we have for him will always remain the same. You can think of him and smile, hear something funny and laugh because it reminds you of him, eat something tasty and know it was his favorite dish.
His life impacted on so many. I never want him to be forgotten.
A bunch of students from another school in town raised 1,200.00 and sent it to Pediatric Cancer in Michael's Memory. The teacher said they came to her and wanted to do something. Thank you all at P.S. #14 School.
Spring is here and baseball has begun. It will be hard to see his teammates all together and Michael not running to be a part of them.
Anthony is playing for the Rookies this year and I hope that we can find joy in watching him play.
Frankie begins Rugby on Saturday, I don't have a clue about that game. I only know it's rough.
As you go about your day today please keep in your prayers a special friend from the hospital Sean. Sean had been in remission and relapsed yesterday. He's been fighting for years and he's back at the hospital. Please pray that he will have a recovery.
Have a peaceful day

In Sadness Today,
Sharon

Saturday March 25, 2006
Today started out nice and sunny. Frankie was playing an exciting game of RUGBY when he walked off the field with blood all over his face and shirt. Needless to say we decided to go to the Emergency Room for an XRAY. The Oncology world of emergencies all seemed to flash back to me and seem easier to deal with. This scenario was someone with a rash in the waiting room, a little girl vomiting all over the floor it just seemed liked GERMS all over. They called Frankie into the room and told me sorry you can't go- he's 18. I really didn't want to accept that and went back to the desk and insisted that I go. He needed a Tetanus Shot because of a scratch on his face and the XRAY showed a definite FRACTURE of the NOSE. On Monday he will need to see an Ear,Nose,Throat specialist. Thank God that's all it was. Needless to say, Frankie is bummed that he cannot play Rugby for a few days.

Thursday, March 16, 2006 11:11 PM CST

Michael I know how much you loved St. Patrick's Day. I'm hoping the bagpipes are playing in Heaven today.
What I'm really going to miss the most today is you singing the UNICORN Song.
Wish the St. Baldrick's team Luck! You had the best bald head ever :) One St. Patrick's day it was so smooth we drew a shamrock on it.
We love you and miss you dearly each day.

Thursday, March 16, 2006 9:34 PM CST

An Irish Prayer of Blessing

May the road rise to meet you,
May the wind be always at your back,
May the sun shine warm on your face,
The rain fall softly on your fields;
And until we meet again,
May God hold you in the palm of HIS hand

Saturday, March 11, 2006 10:27 PM CST

It's almost been a month since the last update.
I know many of you still check in quite often. I hope you can understand that it is sometimes hard to update without Michael physically being with us.
Today was special for Anthony, he made his First Penance.
He also started practice for baseball and I think he's off to a good start. He one of the younger ones on the team but he sure fits right in.
Frankie started Rugby practice and is "Modeling" in a fashion show at the request of his school. I beleive he will be wearing a Tuxedo. His scholarship application for the Elks Club has been sent to the State Level. Hopefully we will hear some good news on that.

On Friday March 17th, there will be a St. Baldricks fundraiser in Michael's Memory at Newport Centre Mall in Jersey City ( Broadway Hair Care). Volunteers will shave their heads and proceeds will be sent to Cure Search (pediatric cancer research) in Michael's name. You can link on to www.stbaldricks.org One of Frankie's friends from school Ryan Loftus is shaving his head and has raised almost 2,000 already. Ryan we are so proud of you!
More info will be put there on Monday .
The people who organized it just found out about this about two weeks ago. It may be a small turn out but they hope to expand next year. One year when Michael was totally bald I painted a Shamrock on his head for the parade. HE thought it was the greatest. One of the volunteers is a woman. She was so inspired by what this event benefits she decided to participate.
Also, Michael's friend Alexandra wrote a short story about him in which her school published. Thank you Alexandra for the friendship and support you have shown. You are very brave. I am so proud and I'm sure Michael is too! Great Job I can't wait to read it!
For those of you who pray for Michael's hospital friends please continue to show your support. There are so many of them struggling each day.

Warmly
Sharon

Monday, February 13, 2006 8:47 PM CST

HAPPY VALENTINE'S DAY MICHAEL!!! YOU WILL ALWAYS BE OUR SWEETHEART WE LOVE YOU AND MISS YOU DEARLY!!

Valentine's Day was always special for Michael. The past few were spent if not in the hospital , in the outpatient clinic. His class always sent cards and sweet treats to keep his spirit up.
I know that he will be with his class tommorrow celebrating all of their friendships. When I went to see his teacher a few days ago there were hearts covering her door with all of the children's names on them, right on the top was a heart for Michael. I didn't say anything to her, but quietly I thought to myself how sweet of her.
With all of the snow we had over the weekend the boys were anxious to get to the park to go sleigh riding. After a few times down and having so much fun, Frankie said "these are the times that I miss Michael the most" We miss him in everything we do.
Tommorrow will be one year since our dear friends THE YOUNG family lost their ANGEL JOSHUA. Joshua was treated in NY and also headed to Philadelphia. Please pray that his family has some peace to get through the day.
Frank Sr, went to see John Edwards a few weeks ago and
had an amazing connection.
May all of you have a wonderful Valentine' Day!

Warmly
Sharon

Tuesday February 21, 2006

Our little Angel Michael has been gone for 4 long months today. We've been having Michael's favorite dinner on the "21st" to celebrate his life.
He had quite a bit of favorite things to eat when I think back. Chicken Francaise was the all time BEST. Anthony usually says he's eating 2 pieces, one for him and one for Michael.
Bless his little heart, he misses him dearly.
Until the next update be well.

Monday, January 16, 2006 10:39 PM CST

Hello Friends,
It's hard to beleive we are in 2006 and January is almost over. This week would have been 7 years since Michael was diagnosed, January 19th to be exact. I can remember it like it was yesterday. It will also mark Michael's three month anniversary. It is just so hard to believe that it's been three months already. Each day I feel his presence in some special way. There are so many Michael stories that have been told and written. One came across last week and I won't mention names and such but I think the story itself is so important and touching.
A blood donor friend of Michael's so graciously donated at MSKCC for Michael and decided two weeks later that they would return to donate platlets. When he went to register there wasn't any information in the computer on the previous donation. After further investigation, a doctor appeared and asked to speak privately to him. It turns out the the blood was not able to be used and the testing process wasn't able to be done. The cholesterol and triglycerides were so high it was a danger. He immediately made an appointment at a personal physician. The doctor said "Thank God we caught this in time", he in turn said "NO, Thank MICHAEL" So the email to me was to tell another Michael story, this one being a first to say that Michael probably saved his life.
Even though he is not here with us, he is still working in so many ways. I have received some very special messages from Michael. He is with us and I hope that each and everyone of you will continue to feel his presence.
His school won the Christmas Tree contest. I will try and get the picture up on the site this week. The judges were moved by what the students did for Michael and all of the children struggling with Cancer.
Many of you know Michael's friend HARRISON. He had surgery this week and came through with flying colors. Please continue to pray that each day he is one step closer to NED. He's been almost 4 years without a break. In something Michael wrote back in the Spring, the first line was "He hoped Harrison was finished with treatment soon" So we're praying the he and his family will soon be free of the NB world.
Anthony scored his first basket this weekend at PAL Basketball he was so excited. Frankie has exams this week and is beginning to talk about Rugby for the Spring.
I would also like to extend a special thanks to Mark Messier, his sister, The New York Rangers and Lynn - Tommorrow's Childrens Fund Director for all they did to make Michael such a special part of the Jersey Retiring Ceremony on January 12th. I did not know how much Michael touched their lives until I saw the page in the Commemorative Program.
Until the next update be well .

Warmly
Sharon

Saturday, December 31, 2005 4:05 PM CST

It seems like most of Michael's treatments always fell around Christmas/New Year's. Hot Antibodies took place in December, Transplant kept him inpatient Christmas and New Years ( he would have been 3 years post transplant today),
Texas Vaccine 2004 - arrived home on December 23rd just in time to celebrate.
New Years Eve is a tough one. We celebrated in the past since transplant with cake and a special card for Michael.
2005 has alot of memories for me. Michael started off the year not so great. His disease progressed and was really sick and had to do radiation. EArly Spring brought us to Dr. Maris where he tried ABT and that made him really sick as well. Then Spring came around and he was receiving transfusions a few times a week but still managing to play baseball. June started a wonderful summer for Michael. He turned 11, caught a huge fish and didn't have a transfusion the rest of the summer. He traveled to North Carolina , a trip he waited 2 years to go on, went to Connecticut and returned to school as a 6th grader for 2 weeks. On September 24th he went inpatient, never did we think he would not return home. I will hold every memory of 2005 in my heart forever. Michael made us all laugh at some time and smile as well.
Let the New Year be one of Peace for you and your families.
May those who are still fighting this disease be blessed with good health.

WE LOVE YOU MICHAEL!!



Warmly,
Sharon

Saturday, December 24, 2005 8:59 PM CST

I know so many of you have still been checking the webpage and I apologize for not updating sooner.
This month has been so hard. On Wednesday, Michael's two month anniversary his headstone was placed at the cemetary.
It is a beautiful, everlasting tribute to Michael. Thank you BURNS Bros for expediting the creation and placement of the stone. The stone has a beautiful of etching of St. Michael the Archangel and next to Michael's name is a bat and ball on one side and a fish and fishing pole on the other. His photo is also in color.
A few of Michael's friends stopped in to wish us a Merry Christmas, thanks Samantha ,Jared and Jonathan. You are all very special and I'm sure Michael is smiling down on you.
Anthony did not want his picture with Santa this year beacuse Michael would not be in it with him. So we skipped it.
So as it gets closer to December 25, I wish all of you a peaceful Christmas.
Please remember in your prayers tommorrow OUR ANGEL MICHAEL and all of our ANGEL friends and those who are still fighting so courageously to beat the disease.
MERRY CHRISTMAS MICHAEL!! I know you are celebrating with Jesus - WE LOVE YOU DEARLY AND MISS YOU SO MUCH!

In Peace, Hope and Love,
Sharon

Tuesday, December 6, 2005 10:52 PM CST

I typed out a long update a few days ago and Caringbridge decided to not be cooperative and I lost the entire message.
Not a day goes by that Michael isn't thought about, spoken about or talked to. I truly beleive that his spirit is so ALIVE and will continue to be. Hearts are broken and true pain is felt. I know he is watching over all of us in some special way.
The Cal Ripken Baseball League and St. Mary's CYO Basketball
have both established Memorial Awards . Midtown Community School is working very hard to decorate a Christmas tree in Michael's memory and for Pediatric Cancer Awareness. You may ask how? Well they are cutting out 8,000 snowflakes to represent the number of children diagnosed each year. It will be judged next Friday for a State Contest. They already are WINNERS for taking on this task. Anthony told me that they dedicated a song for Michael at the school concert today- I think it may have been "We ARE the World"
Anthony and I are going to group every Wednesday and Frankie will be going during lunch at school.
Anthony also belongs to Rainbows (a group for loss).
Tonight we attended a Christmas dinner sponsored by Bereavement group and it was hard to see all the pictures of children who are ANGELS- especially when one is your own. They had a balloon launch afterward and all of the balloons seemed to be flying in the same direction.
It just doesn't seem real. Everywhere you look reminds you of Michael.
One of the Mom's at the hospital called and told me she bought a can of Spaghetti O's to keep on her shelf because it reminded her of Michael.
He touched so many people in so many places. The kind words and cards that have been sent and phone messages sure to say "He was one of a kind"
As everyone is shopping for presents and decorating their houses and trees. We are waiting for the headstone to be placed and cleaning off the snow on the grave blanket.
Just doesn't seem fair.
Frankie received his first college acceptance this weekend
RIDER University- with 11,000 a year for 4 years in scholarship money.
Anthony- skated around on a new artificial rink at Hackensack with Mark Messier. Boy was he thrilled- it even made news coverage on a Ranger Pre Game Showing.
I will place a photo of the decorated tree as soon as it's completed. Many of the families on the Neuroblastoma Listserv sent their children's names to be honored or remembered. The tree will be called "MICHAEL's LIGHT"
Yes Michael, you surely spread light to all of us!
We love you and miss you dearly!!!


Sharon
"Angel Michael" 6/8/94- 10/21/05
FOREVER 11

Thursday, October 27, 2005 8:14 AM CDT

Life just isn't the same without Michael.
I have alot of emotions and feelings to express but I'm going to save it for another time.
I'd like to share with you the Eulogy that Michael's principal gave at his funeral mass. Following that is a letter from the Chief of Police that is also very special and meaningful to us.

The attached Eulogy for Michael is my expression of love to his family. Michael was a sixth grade student at Midtown Community School in Bayonne NJ. Michael loved his school with all his heart and soul...and we loved Michael with ours. He will remain...in our hearts forever.

With Deepest Sympathy
Christina Mercun


Bishop Thomas Donato,Reverend Clergy, Sharon, Frank, Frankie and Anthony , Family, Friends and Loved ones of Michael

I would first like to thank Bishop Donato for making a special exception and allowing this expression of love as we gather together today to pay tribute to Michael..a truly special child, who touched all of our lives in a very significant way.

I think I speak for everyone here today when I say we all wished this day would never come. How could someone so young and so full of life be gone? The sorrow we all share is beyond words. When I sat down to write this Eulogy, I was overwhelmed with emotion. I doubted that I could convey Michael's sweet essence in words.

I asked Michael for inspiration, and I could hear his little voice say "Mrs. Mercun don't you feel the magic?" For those of you who don't know..feeling the magic is what we do at Midtown Community School. The magic is that special feeling inside that makes us feel good about ourselves..like there isn't anything we can't do. I wanted to answer him and say "I'm really not feeling the magic today, Michael!" and then I realized what this special child has endured throughout his short life.

How many times , as this devastating illness ravaged his little body, could he have said "I'm not feeling the magic"... He was prodded and probed time and time again. He struggled to survive each and everyday ..and never complained.
Instead-he made us all feel good- he made us feel that magic!

I often told Sharon, his mother, Michael is an "old soul" in a chld's body. He was wise beyond his years. He just had a natural sense of knowing how to win friends and influence people of all ages from all walks of life.

He was able to establish and maintain relationships with famous movie stars and athletes, Derek Jeter was his buddy.. a marine in Iraq was his penpal, teachers, policemen, firemen, nurses,doctors..to name a few. He was a child who was admired,loved and embraced by his friends and classmates. He was adored by his loving family ,parents, brothers,grandparents,aunts,uncles and cousins.

He had the unique ability to transition gracefully from generation to generation. Those beautiful BIG eyes, that magnetic smile and deep dimples..how could we resist falling in love with him?

Michael truly lived life to the fullest. Surrounded by the love of his family, he was passionate about life and everything life offers. Of course, to know Michael is to know his love for sports. It goes without saying that his favorite team was the Yankees..and I think that now he has a BIG connection up above, and if Michael has anything to say about it, unlike this year they will be winning the world series from here on out.

This summer..and what a wonderful summer he had..he discovered a new passion-fishing. I think the photo of Michael with that "big fish" is one that we will always cherish.

Michael also loved to play games, in particular card games. His favorite game was "21" and of course he loved to win. I think he was sending a message when he passed to the other side and entered Heaven on October 21st.

My favorite of all Michael's passions was his passion for food. I'm sure many of us could identify with that one! He enjoyed every morsel of food, every meal his mom cooked. He savored each and every bit. I will never forget a story that Sharon once told me about a meal they had out at a restaurant,in between treatments, during one of Michael's hospital visits. He said "Mom, this shrimp is sooo good that it's bringing tears to my eyes" Now, what child speaks like this? How Sharon enjoyed feeding him and indulging him to get his mind off of the serious business at hand!

Michael had many heroes in his life, whom he admired and looked up to lovingly. Throughout the years, so many people gravitated to him and offered support and assistance. What Michael didn't know was that HE was really OUR HERO. We all stand in awe of his bravery, courage, determination and perseverance.

It's hard to accept that someone so young and so vibrant could be taken from us. Our hearts are truly broken. But I think that Michael's legacy MUST live on. I think we must follow his example and live life to the fullest. We should embrace our families and loved ones each and everyday, just as he did. We must not trivialize life and complain about small matters, instead we must put life in perspective, be grateful for what we have, and maintain a positive attitude and outlook,as he was able to do.

Michael has made an everlasting imprint on our lives. He is gone from this world , but he will never be forgotten. At the wake, I listened to Michael's parents thank person after person for what they did to help Michael.

Sharon and Frank, we would like to thank YOU for sharing your most precious gift with all of us.

I beleive Michael is here with us today...and I would like to say to him...

"Yes, Michael, Mrs. Mercun, and all of us do feel the magic..
that Magic is YOU!"



The follwing letter was written by Chief Kubert, Bayonne Police Department:

October 21, 2005
TO: The Police Department
FROM: Robert Kubert, Chief of Police
SUBJECT Obituary

Earlier today the Bayonne Police Department lost a cherished member of our ranks. It is with profound sadness that I inform you of the death of "DIRECTOR" Michael Romano. Michael, who was "Hired" by the Bayonne Police Department several years ago, served as an inspiration to all members of our Department. Though faced with adversity day in and day out, Mike remained optimistic and always encouraged those around him to do the same. His courage as of late defines the term hero and makes Mike a shining example of who every police office in particular, and every human being in general, should emulate.

Mike's family and I sincerely thank everyone who donated their platelets,wholeblood, time,moral or financial support on his behalf.

The entire Bayonne Police Department also wishes to convey our sincere condolences to Mike's family, extended family, classmates, eduators, healthcare providers and the many untold people Mike befriended during his time with us.

We salute you "BROTHER ROMANO" and will always remember you as the Finest of the finest.

Friday, October 21, 2005 3:36 AM CDT

FUNERAL ARRANGEMENTS FOR MICHAEL:
Sunday and Monday 2-4 PM and 7-9 PM
Keenan O'Brien Funeral Home
Avenue C and 47th Street
Bayonne, NJ 07002

Funeral Mass- Tuesday October 25th
9:30 am
St. Henry's Church
Ave c and 29th Street
Bayonne NJ 07002



At 12:12 am Our sweet little Michael
became an ANGEL.
He was at the hospital with his Dad. He did not suffer one bit. It happened in a matter of minutes.
I came home to prepare the boys not thinking it would be that quick. The Bayonne Police Department drove Frankie and myself over. We didn't make it in time but we got to say our goodbyes. My friend Gina came to be with us and I'll always treasure that.
Michael left a lot of good memories. But life will never be the same without him.
Michael fought Neuroblastoma long and hard for almost seven years.
I will post as arrangements are made.


In sadness and sorrow,
The Romano's
Sharon,Frank,Frankie and Anthony

Wednesday, October 19, 2005 2:33 PM CDT

I typed a pretty long email yesterday and I guess with some technical difficulties from CAringbridge it was lost. Many have been having a problem getting onto the website the past few days. I guess it wasn't meant to be posted
Anyway, since Monday Michael has been sleeping an awful lot and is just not himself.He is not really eating much at all. There is a big concern as to Why? His counts are still low and today he was .02. Neurology came to see him last night and did a quick exam which seemed to be ok. This morning Dr. Khakoo , Dept of Neuro came and ordered an MRI of the head to make sure there is no infection in the brain.They also ran a bunch of blood tests that could be causing this as well. He is back on TPN as of last evening, which he was pretty much requesting because he felt weak,almost like he needed a piece of choclate.
Today he continues to sleep and is really not motivated at all. The clowns stopped by and he wasn't really interested .
I will try to get more answers today and update again tommorrow.

Thanks
Sharon

Monday, October 17, 2005 8:17 PM CDT

I finally met with Dr. Kushner this afternoon and the MIBG scan is pretty much the same as September 9th. There is a new spot on the right pelvic. Considering that Michael hasn't had any chemotherapy since August 21st, the results were not too bad. He does show disease in the skull, shoulders ,ribs, sternum ,thoracic and lumbar spine, left pelvis and femora and both tibia.
He had a real slow day, very sleepy all day and no enthusiasm. He did have a friend come visit with some treats which cheered him up for awhile.
He really isnt' eating much at all. Tonight we will try to add some megace to increase is appetite.
As far as going home, If the lung situation clears up he probably will be released with low counts and very cautious orders at home. He will be seen in clinic at least 3 times a week but at least he will be home with his brothers, eating food from home and sleeping in the comfort of his own home.

We don't know when these counts will come up , prayers are just needed that Michael be protected at this most difficult time.

With Gratitude,
Sharon

Monday, October 17, 2005 10:38 AM CDT

Michael slept through the entire MIBG scan on Friday. Later on in the evening he picked out his favorite goodies from the "Goody Cart"- gum, lollipops and cheetos. Thanks Friday night volunteers. His roommate left and he lucked out having the room to himself again- AHHH peace and quiet!!
It was so nice to see the sun shining through the windows on Saturday morning after a week of rain. Michael's nurse Paulette really helped me get him motivated on Saturday to walk. He did one lap around the floor, took a shower , and let her do some chest PT. In the middle of playing SIMON with his two teacher friends, Mrs. Czuba and Mrs. Cutruff he yelled "My nose is bleeding" . He was scheduled for a platelet transfusion at some point with a count of 12,000. The immediately called the blood bank and sent them up STAT. It bled quite a bit, he gor nervous when he spit and that was also bloody. With Michael's history of low platelets he is never symptomatic. It scared him a bit.
He walked a second lap around and this time his back began to hurt him. I guess we worked him too hard because he took a two hour nap when dad came. All in all he looked much better today . It's frustrating to have to wait all weekend for results. I'm sure by Monday we'll have something.
Sunday, Michael had a "full house" - I mean company not a card hand. Grandma, Poppy and AUnt Caroline came, I came over for a little bit so Frankie could visit, Anthony only got as far as the door today because of the visiting rule of having to be 11. He spent time in the lobby with Abby and Michael's friend Emily visited with her mom and dad.

He ran a littler fever in the morning which warranted another chest Xray. The xray looks the same as the one taken during the week. Still some fluid moving around.
He watched some Football with dad and then took about a 3 hour nap.
He was up early this morning and by the time I got over here he was back to sleep. He doesn't seem to want to get up.
He had some visitors from the Bayonne Fire Department. They donated platelets and were nice enough to stop up and visit.
I have to THANK the FIRE and POLICE of Bayonne for ALWAYS lending a hand when called upon. I would say for almost the past 3 years they have been consistent in sending donors over.It only takes a phone call and they get moving.
Michael has been getting platelets almost every two days.
I will update again later today after meeting with a doctor hopefully.
Please continue to pray for Michael. He needs white cells, he needs the lungs to clear up, he needs to be home.


With Love
Sharon

Thursday, October 13, 2005 7:20 PM CDT

I should have updated earlier for those who are checking in faithfully everyday. Sorry!
Michael was moved to a regular room last evening. He is very happy on the regular floor. He's walking a bit more and sitting in the chair more frequently.If his white count would come up he'd be out of here. His lungs are by far clear. He still has a long way to go before they are 100BR>He played bingo again in the playroom and attempted to make slime.
So his room is a corner one with a view over York Avenue , you can see New York Hospital and the river behind it.
As he received a phone call from Actor ADAM SANDLER today, he smiled and talked as if he was on top of the world.
Finally, the old Michael was back. Sandler is his favorite actor. LAst week when he was feeling so sad and down someone from the hospital asked who he would like to see or receive a phone call from as a Suprise. To everyone who helped make that possible WE THANK YOU!!! Mr. Sandler was funny, kind and caring. They spoke for about 20 minutes.
Michael says "It was awesome to have talked to him"
His favorite nurse MaryEliza has returned from maternity leave and she treated him with TLC today.
We continue to pray that the cells come back, MIBG scan is stable tommorrow and that Michael continues to fight this beast!!!!

FRIDAY OCTOBER 14,2005

MIBG Scan was pushed from 8am until 3pm this afternoon. Michael received a unit of blood today. His white count went to .04 YEAH He still has a long way to go to get to a decent number. We're hoping it's on it's way. Now it's waiting over the weekend to see what results are and where he stands right now. He is trying is best to walk but really doesn't want to. His back hurts when he starts moving about. I continue to thank everyone for their well wishes, phone calls, presents and help at home.

With thanks
Sharon

Monday, October 10, 2005 6:13 PM CDT

Michael had a pretty full agenda today. His Bone Marrow's that were scheduled for 1pm were done earlier. Anthony and I were driving around looking for a parking spot and they decided to take him in around 11:15. He was a little upset but I spoke to him while he was on the table. He ALWAYS likes dad and I to be with him when he goes under. From recovery he went to have an Echocardiogram and then back to his room. He didn't have too much pain. At around 4pm the Physical Therapy Department paid their first visit. Michael was not a happy camper. They really want to work hard and get him up and in the chair for about 6 hours a day and walking. He walked into the hallway today without oxygen!
GO MICHAEL!!!!!!
Suprisingly he also asked to go to the playroom to play BINGO tonight! So here we are and Bingo is starting. Michael wants to be back in his room at 8pm for the BIG GAME- By the way, his nurse tonight is a big Anaheim fan so he will have fun routing against her.

Sunday, October 9, 2005 11:15 PM CDT

Michael went down to CT SCan early this morning and then for Xray. Results won't be available until later on MOnday. He threw up the contrast he had to drink. 12 ounces was alot for him to drink at one time. He kept busy watching the football games today and checking his teams on the computer. He was in a good mood when I went to visit this afternoon. He walked a bit. He stayed up a bit later tonight routing his favorite team on ... GO YANKEES!
He sent them good vibes. Monday afternoon he will have his Bone Marrow checked. He will probably be a bit sore, especially if Dr. Kushner does them-he usually digs deep.
He will be able to eat after that. He loves the green bean casserole from Green Giant so that's what he'll probably have. The eating is hard because he really doesn't like the hospital food except for the Grilled Steak.
All the extra prayers are going this week that he will continue to get stronger and get home.
I spoke to Michael's friend Ray from The Ray of Hope Foundation and he is praying extra hard and has the entire rosary keeping him in their prayers.
I will post as soon as we have some results.

With Thanks
Sharon

Saturday, October 8, 2005 1:56 PM CDT

Michael had a really well rested night. He fell asleep around 10 and didn't actually get up until around 1. I was a little concerned with the sleep and realized that the nurse had given him IV Vistirol for his platelet transfusion. He also received a blood transfusion today as well. Once he woke up he sat in the chair and got washed up. He played on the computer a bit and then was tired and wanted to go back in the bed.
He's making a little progress as each day comes.
Frankie took the SAT again this morning and had an interview with Scranton University yesterday. He seemed very positive about it. He really wants to go to The College of New JErsey. Anthony will be coming up to visit as Dad and I will switch shifts.
Michael is hoping the Yankees will rest up today and take the game tommorrow. He's watching the Rutgers game now.

Happy Weekend to All!

Friday, October 7, 2005 8:28 AM CDT

Yesterday's chext xray shows a little more improvement. Michael is doing a great job in coughing up all the junk. He feels so much better when he has a nebulizer treatment (he gets that every four hours) Last night was his favorite TV show night "Survivor". He is still only eating little pieces here and there. Platelet transfusions are still needed almost every other day. We are very comfortable here in the POU but I'm sure they will be sending him over to a regular room when one becomes available. He's running a bit of a temp . I'll update again later on if any more news arises.


On Monday Dr Kushner has ordered at CT Scan and Bone Marrow Aspiriations. He will also have an MIBG scan on Wednesday. The Bone Marrow will help the doctors to determine if the virus has hit really hard or if his marrow is depleted because of so much treatment.
Michael needs those prayers coming all week.

Wednesday, October 5, 2005 10:38 PM CDT

Some changes were made today with Michael's antibiotics because of his kidney function. They adjusted a few so the kidney doesn't have so much filtering through that can cause it damage. Most of the new medications are in pill form which he doesn't have a problem with. Tonight the pharmacy ran out of pills and sent liquid. Michael refused to take it because he would probably throw it up anyway.
He did ask the nurse if she could put it into capsules.
Well, she came back with 16 of them. The trooper that he is, took all of them and requested the capsule for tommorrow. He walked again today with dad and played some playstation. Anthony came to visit for a short while, he couldn't wait to get here today. Tonight we played some cards and then he fell asleep early. He received blood and platelets today and white count remains the same at .03
His breathing is much better without the oxygen. It's only when he's up and about that he feels winded. His appetite is not great at all and they are giving him nutrition through the IV (TPN).
If he continues to do well in the next few days they are talking about moving him to the regular rooms.
I am so grateful that things are looking better, it was really scary last week seeing him not able to breath.
He really need some white cells to help move things along.
He appreciates all of the cards, gifts and well wishes.
Thank you all for thinking of Michael in such a special way.

Warmly
Sharon

Tuesday, October 4, 2005 11:11 PM CDT

Michael had a pretty good night last night. He slept through until 5am and we had to wake him up to go to the bathroom because they are giving him Lasix to reduce some of the fluid. Suprisingly he slept through the night without the oxygen mask. He has a little blowing at his mouth with the blowby. He got out of bed and walked twice today. The first time he was ok but the second time tonight he lost his breath. We will try again tommorrow. He also ate some steak and another 2 pizza rolls and drank Iced Tea. He's trying so hard but he's tired. He had some company today; his friend Alexandra and her mom were in clinic and they stopped by to see him. My cousins from Barnegat also came up -he was sort of quite with everyone.
His nurses have been so patient with him.
Here's hoping that it will be a super day for him today!!!!
He needs white cells,white cells and more white cells.....
Hopefully the Yankees win will have him in good spirits.
Thanks for checking in on Michael.

Warmly
Sharon

Monday, October 3, 2005 3:59 PM CDT

Finally there is some improvement in the Chest X Ray. Today actually shows a much clearer xray. Michael atea about 3 pizza rolls and drank some gatorade. He was up all afternoon and is just now dozing back to sleep.He's been getting the Albuterol treatments every 3 hours and they have just bumped him to every 4 hours. The medical staff is really pleased with the xray and the improvement in his breathing. We now need to pray for some white cells to get him moving. One day at a time is what we continue to do.
Hopefully we have some more good news to report tommorrow.
Also, to our many friends who celebrate the Jewish New Year we wish you a year of health, happiness and love!

Warmly,
Sharon

Sunday, October 2, 2005 10:13 PM CDT

Things still be the same here in the POU. Michael did not eat anything today. He was up for a bit. Poppy R and Aunt Caroline came for a visit then he dozed off again. The doctor took him off of Celebrex because his Kidney function was a little off. He's been sleeping most of the evening.
His class sent him cards and he really enjoyed reading them. Michael has had a wonderful group of nurses taking care of him here. Their care and concerns are genuine.
Today was the fishing tournament that he should have been a participant in. I know he really wanted to be there.
I will update tommorrow after the doctors come around.
Please continue to pray. I know so many of you have added him onto prayer lists over the weekend and I really appreciate that.

Warmly
Sharon

Saturday, October 1, 2005 3:20 PM CDT

So far today seems to be ok. No fever in over 24 hours so that is good. He perked up a little when Frankie came to visit with his girlfriend and 2 other friends. He actually told me "He was proud of his brother for getting into NY via the subway system". He had a few spoons of noodle soup today. HE played Connect Four a couple of times and watched the Yankees. Breathing is pretty much unchanged. He seems to be better after he gets an Albuterol Treatment (nebulizer). Hopefully things will continue to slowly improve one day at a time. Michael is surrounded by the love of so many family and friends and he greatly appreciates that!

GO YANKEES!!!!!!!!

Warmly,
Sharon

Friday, September 30, 2005 1:00 PM CDT

Sorr for the delay in update. Yesterday was a pretty chellenging and upsetting day for Michael. His day started off on the wrong foot with his nurse flushing his line too fast. He tasted the saline in his mouth and caused him to cough. (He was so mad at her he didnt want her in his room anymore. We then tried to change his clothes and he went into a panic about his shirt going into the wash and being lost. He continued to talk to the nurses in a disrespectful way . All of this so unlike Michael. We actually talked to the Psychologist and he explained what could have been happening. They checked his meds, his oxygen rate and some other blood related things. He is probably jus angry, made and doesn't want to be in this environment. The POU is basically a step down ICU- when you need monitoring you need to be here. He calmed down a bit and then became agitated again later in the evening. At around 11 he fell asleep . He got blood again today in order to keep the oxygen level up. Today he seems to have a build up of fluid around the lungs. This could be a factor of lack of nutrition, not enough Albumin in his system. He will be monitored closely over the weekend. There is a possibility that the Surgical team may have to be called in to drain the fluid. We've shut the phone off in the room because it's distracting Michael. I will continue to post on the update over the weekend. Please pray for Michael- he struggling so hard to overcome this.

Warmly
Sharon

Tuesday, September 27, 2005 3:54 PM CDT

I am happy to have better news today , Michael is feeling a little bit better and actually got up out of bed and walked and sat up in the chair for about an hour without the oxygen on him. He shared some laughs with his CLOWN friends Drs. Bovine and Swami (from the Clown Care Unit) Dr. Swami did a trick for Michael that left us all puzzled. He played Playstation and are about to start Monopoly. The chest xray from today actually looked a bit worse than yesterday's, but going by how Michael is looking and feeling the team is not too concerned. His Nurse Practicioners from the NB team came and visited as well as his friend Vicky from clinic.

Monday, September 26, 2005 6:02 PM CDT

Thank God Michael did not have to go to the ICU nor did he have to have the Bronchial Scope today. He is on 4 antibiotics that will cover his infection. He had some pain on his right side during the night and slept most of the day today. They are keeping him pumped up with blood to help his oxygen as well. He is still getting oxygen and it's helping his breathing. I'm sure he will be here for quite sometime. Once he's off the oxygen he will be moved to a room on the regular pediatric floor. So please continue to pray that he has a speedy recovery.
Thanks to all of you who have called to offer your help and share your concerns for Michael. It really means alot!
Keep checking in for updates.


Thanks
Sharon

Sunday, September 25, 2005 1:15 AM CDT

Just a quick update until tommorow.
Michael fell asleep tonight at around 6 pm and woke up at 8pm with a fever of 104. I had to rush him into urgent care
He took tylenol before we left and threw it up on the sidewalk getting into the car. He was cold, dizzy and felt shortness in breath. The traffic was bumper to bumper going to the tunnel. The fellow on call was waiting for him in URGENT care . She exedited things along, including oxygen to help h im breath. His rates were pretty low. (He used to fight me witht he mask on his face but tonight it was the only way he felt he could breath. They originally were going to send him across the street to the ICU unit to be monitored all night. After some re-arranging he will be going up to the Pediatric floor in the POU (step down ICU)
He had a chest xray and chest CT scan. Unofficially it looks like he has a bacterial infection in both lungs. They started him on antibiotic. They also see a little fluid as well. Depending on how he feels in the next day or so will determine if they need to go in and drain it.
I will update as soon as possible. He will also be getting blood and platlets again. His white count is .04 YES I mean white not ANC. We need all Michael's prayer warriors to pray for white cells. He was doing so well and now this roadblock will hold up any further chemotherapy.
He's having a hard time getting comfortable in the bed, hopefully we will get upstairs soon.
For all he goes through day after day with no complaints
he truly is "MY HERO"

Thursday, September 22, 2005 11:24 PM CDT

I'd like to go back to last Friday and thank Officer Fabbracatorre of the Bayonne Police Department for organizing another Card Game for Michael. There were about 75 men and 2 women who played. Mark's wife Maria, Angela Cutruff, Cathy Squitieri and BIG APPLE Resturant donated the food for the evening. THANK YOU ALL SO MUCH!
Michael had a really busy week. Monday he had a clinic visit. Tuesday he started CCD classes again and then headed to the Yankee game with Anthony and Dad. Thanks to Michael's special friend and the Yankee ticket office in cooperation with the hospital the boys were able to ge some high fives from some of the players before the game.
Wednesday we went to see "Lion King" compliments of a donation made to the playroom at the hospital. The show was fabulous and Michael and Anthony enjoyed every minute of it.
Today Michael spent the entire day at the hospital getting a blood transfusion and platelet transfusion. His white count has bottomed out again and he will need to have GCSF shots all weekend to help him out. They didn't have a bed for him today so thanks to Michael's friend Harrison, we were able to share a room and he watched TV. I was really proud of him that he worked for an hour with the hospital teacher Ross on a Math assignment.
I just hope that the counts recover a little quicker than the last time so he can start the Oral Chemo again.
Michael will return to clinic on MOnday and will probably need another platelet transfusion after his mediport bled a little on the way home today. I called his nurse and she told us to apply pressure and it should stop. It did thank God! He probably used some of the platelts he got today.
Yankees are in first place, no school on Friday and one more week to the fishing tournament ... all of those are making Michael one happy kid!!!!!
Hoping you have a great weekend!

Sharon

Tuesday, September 13, 2005 10:58 PM CDT

After a very stressful weekend of worrying about the scan results I am happy to report that the MIBG Scan is STABLE; no significant changes since the last one in July. The CT Scan compared to the one in January does show some improvement in the Spine. Michael continues to have widespread bony metastisis but he also continues to go about his business and not let this disease interfere with his life. He seems to love his 6th grade teacher and today he met with the hospital teacher who will work with him on clinic visit days. His counts are a bit lower this week which warranted a platelet transfusion. He will be able to attend school the rest of the week and return to New York on Monday. With the President in town , we are lucky to not have to travel with roads being shut down.
He will most likely continue on the Temador. It was an absolute blessing to see Michael get through the summer doing the things he wanted to.Who would have thought he would get in all 42 days of chemo?
Please continue to pray for him and the many,many other warriors fighting.

With Thanks
Sharon

Saturday, September 10, 2005 11:51 PM CDT

Considering Michael was not in school basically from January to June he walked into the school yard like he never left. His friends Jonathan and Nicholas made him feel really welcome. I walked Anthony to the back school year and watched him being the journey into second grade. Michael thought he would be able to get to school on Thursday as well but I got a call that he had a CT Scan scheduled for 8am on Thursday. So, he and I ventured over to New York City at 6am because he had to start drinking the contrast by 7am. We had planned to go to the park of grab some lunch with Bryce and his family before they headed back to Arizona after a week of testing which shows him to be NED (No Evidence of Disease) . Much to my suprise Michael needed a platelet and blood transfusion so those plans went out the window. Instead, they delivered lunch to Michael. Friday he had a MIBG Scan at 9:30 he slept through the entire 2 hour scan. There were no official reports in by the time we left the hospital. I will post on Tuesday after meeting with the doctor.
Today Anthony began basketball, his team being coached by Frankie and his friend Mike. They won their game !!!!
Then it was off to soccer pictures and a 2pm soccer game.
They enjoyed some golf at the range with their dad.
Tonight they went to cheer Frankie's school football team on - Prep beat their rivalry Hudson Catholic.
Things will pick up next week with practices , CCD classes , homework and such. Michael may see if there is going to be a BOWLING LEAGUE starting up. Beleive it or not he does have his own bowling ball- (It has Derek JEter's face on it) I'm sure he'll get some fishing in too after school this week.
Tommorrow marks the anniversary of 9/11. A day in which we all can remember so vividly. A tragic day for all. Many of us lost friends or members of the community. Please continue to pray for the many families still looking for comfort.

Warmly
Sharon

Friday, September 2, 2005 10:45 PM CDT

This week Michael had his usual visit to the hospital.( Twice to urgent care because of the shingles. That is all behind him now. His platelets dropped a bit this week. We are forever grateful he hasn't needed a platelet transfusion since the end of June. Next week he can return to the Pediatric Clinic for his scheck-up and he will have an MIBG scan on Friday. His CT scan has not been scheduled yet, he's actually on the waiting list.
Today as we sat in the park, the sun was shining so bright, a cool breeze blowing and the smell of the water made it feel like summer just shouldn't end. The boys were having fun fishing and Frankie came by with his girlfriend Brittany. The boys did alot of swimming the beginning of the summer and fishing somehow just became part of their weekly routine. Michael has an account at the Bait and Tackle Shop (they keep track of all of his purchases and offer a discount on certain items)
I watched Michael today as he worked so hard to fix all the poles with line and hooks. What suprised me most was to watch him cut up the whole BUNKER into pieces to use as bait. This was the boy who about a year or so ago wouldn't even touch a worm to put on the hook. His love for fishing has grown so much. I really think it's like therapy for him . He does it at his own pace and doesn't take away his energy.
So as the backpacks are being filled with new school supplies, news clothes and shoes are being tried on for fit the boys are all stepping into the new school year with lots to look foward to. Michael will be going into the sixth grade and we were joking how I won't get to see him in the School Halloween Parade because the 6th graders are now allowed into the dance.
Frankie has alot to look foward to with start of Senior year next Wednesday and Anthony the cutest second grader will make his First Holy Communion.
These boys are truly "The Boys of Summer"
I will post the first day of school updates. The boys already know who their teachers are.
AS we continue to pray for all of our Cancer warriors let us not forget the thousands of families suffering loss from Hurricane Katrina.

Warmly
Sharon

Friday, August 19, 2005 4:17 PM CDT

Hello Friends,
Our flight to North Carolina landed safely and Michael couldn't have been more excited. We had a great dinner at our friends Gina,Mike and Harrison's house. Tuesday we took a tour of Downtown Charlotte. Michael's future college site "Johnston and Wales" we saw the college. We returned home for a swim and some dinner . On Wednesday we headed to Wilmington NC AKA THE BEACH after Harrisons fingerstick.
It took about 4 hours. All of the kids were really good in the car. Thursday we had planned to go to the beach.
Michael had some pain in his left ribcage and we spent a greater part of the afternoon in the ER. I was worried that it could be pneumonia. Chest XRay was negative. I called NY immediately and set up scans for next week. This morning Michael woke up with a rash in the site of the pain. The rash runs from midline to midline which is the indicator of SHINGLES. So we are grateful that the pain is stemming from that and nothing else.
We took care of the medication and pain thanks to Ursula, the Nurse Practicioner.
All things aside from that MICHAEL had a great day today
He caught a flounder, sand shark and a sea bass and 4 oyesters! He just loves the sport. He is so patient with it. I will update again. But I am so releived to see him enjoying himself despite the bumps in the road.!

Tuesday, August 9, 2005 11:11 PM CDT

Yesterday's counts were once again AMAZING!!!
Platelets still are holding at 77,000. Probably between the dental work and a little fall he had last week.
His White count went up to 7.4 and ANC 4.0
We are truly blessed to have Michael feeling so well and counts recovering the way they are. He has 12 days left of these Chemo cycle and than a break.
YEsterday Frankie went to donate blood for Michael for the first time. We are so proud of him because he really doesn't like needles. Anthony on the other had fell in clinic yesterday and was checked out by Michael's nurse
maybe we'll get a two for one deal!
Anyway that's about all for now. Michael will return to clinic on Monday.
Have a super week!!!


With Thanks,
Sharon

Tuesday, August 9, 2005 11:11 PM CDT

Yesterday's counts were once again AMAZING!!!
Platelets still are holding at 77,000. Probably between the dental work and a little fall he had last week.
His White count went up to 7.4 and ANC 4.0
We are truly blessed to have Michael feeling so well and counts recovering the way they are. He has 12 days left of these Chemo cycle and than a break.
YEsterday Frankie went to donate blood for Michael for the first time. We are so proud of him because he really doesn't like needles. Anthony on the other had fell in clinic yesterday and was checked out by Michael's nurse
maybe we'll get a two for one deal!
Anyway that's about all for now. Michael will return to clinic on Monday.
Have a super week!!!


With Thanks,
Sharon

Friday, July 29, 2005 4:04 PM CDT

Michael seems to be talk of the town today! Yes, I do mean MANHATTAN.. First, his platelets were a whopping 70,000 today. He was up 20,000 from Tuesday. This has to be the greatest news we've had in awhile. Michael is so excited.
He did get a blood transfusion today so he would feel well for the weekend.
Second, Michael received a call from his retired hospital teacher Ms. Marion today. She called to tell him that she was in Starbucks in NYC and she spotted DEREK JETER. She decided to go over to him and say hello and tell him that she though he was such a nice person and the reason she knew it was from a friend they both shared- "MICHAEL ROMANO". Marion continued to tell Derek how Michael looks up to him and how the YANKEES really help Michael feel well some days. Derek said " I saw him about two weeks ago"
He thanked Marion and off he went with his STARBUCKS!
Michael was beside himself when he heard the story.
We have been sooooo blessed in the past few weeks to have Michael feeling and looking so well. He is amazing in everything that comes his way. I pray that come September he can walk through the doors of the 6th grade classroom and start fresh.
"Cancer won't leave Michael alone, so he's decided to take it into his own hands. HE'S DECIDED TO LIVE". That was taken from an article written by Steve Hindley for the COX CLASSIC about 3 years ago!! Michael you are a MIRACLE....
WE LOVE YOU!!!!


With Gratitude,
Sharon

UPDATE
AUGUST 2, 2005

1 Fish, 2 Fish, Red Fish, Blue Fish
Pretty soon we will be calling Michael Dr. Seuss. He went fishing again over the weekend to the Pond with Poppy. On Sunday he went out on Grandma's friends boat. That was very kind of her to take him. So had a good day, nice weather.
Yesterday he fished with his friend Ralphie at the pond again. No luck though!
Michael's mouth is a dentist's dream. The medications over the years have really damaged the enamel on all of the baby teeth and alot of decay. Yesterday he decided he was going to pick at one tooth and it dislodged from the gum. OOPPS!!! It bled a little bit.
Today we went into MSKCC to see the dentist to have it pulled. His counts were good enough. Michael wanted to try and pull it himself but it was a little stuck in the gum. A little novicaine and the tooth was yanked. He didn't even need sutures. Not with a platelet count of 77,000. Keep climbing Michael- you WILL reach your goal of 100,000.
If it's in your heart you can WILL it.

Tuesday, July 26, 2005 10:02 PM CDT

Today was definitely a day for celebration in our house!
Michael's platelets were 50,000 on his own. He hasn't had a transfusion in 3 weeks. He has the medical staff boggled.
After being on GCSF for weeks trying to get the counts up, now he is able to hold on his own. Michael you are AWESOME!!! Next week his goal is to be at 100,000.
There are so many things that can make this situation make sense: he's been outside in the sunshine, fishing more than ever, most of all the prayers of Michael's family and friends. Today is actually the feast of St. Anne. I took Michael to church to light a candle. A good friend of ours, Maureen is really devoted to St. Anne on Michael's behalf.
Our dear friend Ray, from THE RAY OF HOPE FOUNDATION calls upon her as well to pray for Michael on good days and bad.
Whatever the case may be we are so happy to see the smile on this child's face.
So yes, we still do need prayers- they are working!!!!!
He will return to clinic on Friday for a possible blood transfusion.
Until then, keep cool!!

Sharon

Wednesday, July 20, 2005 11:02 PM CDT

This week I have nicknamed Michael "The Mystery Man" for the simple reason that his platelets are 42,000 and has not been transfused in two weeks and his white count and ANC are in low normal range. Hemoglobin isn't too bad either.
All this and it's Day 10 of Temodar (Oral Chemo). His Liver functions are still a little bit elevated and we will continue to watch them. I'll have to go back and see how long ago he was carrying his own without transfusions, it had to be about a year or so ago.
He's got alot of fight in him.
A friend of mine sentMICHAEL a card aboUt three years ago
I never put it away because the words were so strong
it said "MIRACLES CAN HAPPEN, YOU ARE LIVING PROOF"
Everyone has been praying so hard for him that I truly beleive that is why he is feeling so well, looks well, is not in pain and is ENJOYING LIFE!!!!!!
He caught a little catfish in the pond tonight at the park.
He was so excited. He finds peace and relaxation in fishing.
As for Anthony, he has ants in his pants!
Michael's nurse said that the counts might begin to drop on about the second to third week, that will be next week.
I just hope that he can remain as happy as he is for the rest of the summer and be able to get back to school . That will not make him happy but at least he'll be with his friends.
We'll just continue to keep him going doing FUN things and hope for another MIRACLE.

Warmly
Sharon

Monday, July 11, 2005 6:19 PM CDT

Thursday Michael slept for 2 hours on the MIBG table. He's grown so much so the scans take much longer now. He still hasn't reached the 54 inch marker. WE had some preliminary results on Friday but because of issues in the past I decided to wait to post.
Michael's counts were the best today than they have been in probably the past 2 years. His White Count 6.9, Hemoglobin 11.3, Platelets 30 and ANC 3.6
He had a super weekend, starting our Friday night in all the rain with dinner at ARIRANG with his teacher Mrs. Czuba and her husband and Baby Kelsie. Saturday he had front row seats at the Yankee game with friends of ours Erik and John and Suzanne (Who's boss was gracious enough to give the tickets away) and Sunday was Michael's BIG fishing trip.
He caught 5 whoppers!! Michael's Uncle B and Pop caught 10 between them. He was so excited the fish were 38 inches and 19 pounds. Michael's were a bit smaller. COULD ALL THIS FUN BRING UP COUNTS??? Dr. Kushner says "Keep on doing what you are doing"
Now for the scan results- Michael has more uptake than he did in April when he was scanned at CHOP.
He has disease in the bones on the legs(femur and tibia both legs), shoulders, left pelvic area, ribs,right scapula, sternum, thoracic spine and upper lumbar spine ,jaw ,humeri and the skull.
This is a result of the marrow being involved.
He will begin ORAL CHEMOTHERAPY - TEMADOR at home today.
We have discussed this with Michael and will stop it as soon as the counts show any sign of dropping. Michael does not want to be hospitalized anymore. So once again the fight continues. Michael is not complaining of any pain and is not taking any pain medication. He's enjoying himself a great deal.
Please continue to pray that Michael has the strength to continue this fight.

Tuesday, July 5, 2005 10:53 PM CDT

Last week Michael needed to have two blood transfusions 3 days apart. Apparently the first bag just didn't have anything to help boost him. He also got platelets 3x last week. He seems to be feeling ok. He's not complaining of anything- except the sunburn on the tope of his feet.
His knee is still swollen and the NB team has scheduled him for an MIBG scan on Thursday morning. We have held off on the Temador until after the scan- per Michael's request. He's worried about the knee needing radiation and his counts dropping so low again. He's having so much fun swimming and stuff he doesn't want to be confined.
So please pray for him on Thursday morning.
The boys made a Toys R Us run tonight so they have some new things.. Legos for Michael and Anthony(everyone knows he is the banker) he bought some magic coin jar that keeps track of your change he also got a few movies.
Frankie was at the Dave Matthews concert tonight.
I'll post as soon as we have some word about the MIBG.

Tuesday, June 28, 2005 9:12 PM CDT

Hello All!
The good news is Michael's white count and ANC are finally back. YEAH!!! He's been off the the GCSF for about 11 days and he's holding. His Platelets are still low and getting transfused twice a week.
Last week he had alot of fun. On Tuesday we headed to the shore and the boys swam. On Wednesday we went to the Yankee game courtesy of MSKCC. They were given a little tour of what's underground at the stadium and then headed up to Mr. Steinbrenners office for lunch. Anthony was facinated that Alex Rodriguez gave him a high five.
Friday Michael made it into school to meet his 6th grade teacher. He seems to be happy with her and the students in his class. We went to the Boardwalk at Point Pleasant in the evening and were able to enjoy some of the rides and games.
Saturday, the Big Apple Circus came into Bayonne and we went to enjoy the clowns that we see at the hospital every week. Michael and Anthony's friend Harrison and his mom joined us as well.
On Sunday it was sooooo hot, but a perfect day for Michael's long awaited pool party. A special thanks to the Hitchell's for opening their yard to Michael and his friends. I haven't seen him that happy in a long time.
They swam all afternoon.
On Sunday, my Aunt Dolores passed away. Many of you had been praying for her. The boys and I are all saddened over this loss of a truly wonderful woman. She will surely be OUR ANGEL.
Dr. Kushner pushed the Chemo off another week for Michael.
He figured because of the holiday weekend if a fever arose it wouldn't be a good idea to be admitted. So now it's about 8 weeks without Chemo. I hope that what he's taking- Thalidomide and Celebrex is enough.
Dr. Kushner told me yesterday just keep doing what you've been in the last week. He couldn't beleive how well he looks.
Keep praying that Michael continues to be blessed with strength and that all of his friends in treatment have the endurance to get through their treatments as well.

Sunday, June 19, 2005 1:55 PM CDT

Happy Father's Day to All!

Being that it's almost a week since I last updated , those of you who have been following Michael's counts will be happy to hear that his ANC is finally 1.1 with the shots of GCSF. It took about 7 weeks to get to this point. He did get 3 platelet transfusions last week and a Red Blood Cell Transfusion as well but he hasn't complained of too much pain in his mouth. His Liver Functions did go up a bit last week and it was decided amongst the NB Team that he should come off of it for a week. Hopefully he can start TEMADOR (Oral Chemotherapy) this week. Michael really does not want to take it for the fact that he knows his counts will drop and he doesn't want to be hospitalized with a fever and be back at square one.
We should have set sail on the Pride of AMerica this week which we won from the REgis and Kelly show but medically it wasn't a good idea for Michael and I was not comfortable with him not having access to medical treatment 24/7 considering his situation. The folks at NCL were nice enough to invite us on the one night cruise through the harbor and be a part of the firework celebration. Michael was treated really special and was able to go up to the bridge to meet the Captain. He also saw the penthouse rooms that Regis would be staying in this week. At around 10pm we were upgraded to a SUITE and were able to watch the Fireworks from the deck outside of the room. I think Michael has a good time.
Saturday morning he headed to Connecticut with his Dad and brothers to see the Dave Matthews Band in concert.
Anthony is counting down his last few days of school. I can't beleive that he will go to 2nd grade and Michael- 6th GRADE. WOW! It's so amazing how we watch our children grow.
There is so much to celebrate in their lives. I hope that we continue to be blessed.
Updates to follow this week as far as treatment goes.
ENJOY!!

Sharon

Monday, June 13, 2005 11:23 PM CDT

I hope this update finds everyone cool and relaxing indoors.
Michael had a pretty fun weekend. Friday we participated in Relay for Life for a little while. I was so proud of Michael being able to walk around the track. Saturday he slept pretty late. Later in the day we went to a SWEET 16 party and found ourselves coming in late again. Sunday Michael slept until around 12:45. He just loves to sleep.
He got dressed and we headed for his birthday dinner celebration at ARIRANG. Boy was he happy. He was waiting so long for that food. The chef was very accomodating in cooking Michael's food well done. They sang to him and had some sparklers in the cake. He came home and played some wiffle ball and got a nice bruise on his arm from the ball.
Today we headed to clinic , his platelets were only 5,000.
The white count and anc are slowly coming back. He will probably need blood and platelets by the end of the week.
His mouth is feeling a little bit better.He still has some sort of cough that's lingering around. Dr. Kushner agreed to give him a different antibiotic to see if it goes away. The cough is so dry it almost gags him during the night. He's now complaining his knee hurts on and off, It looks a little swollen. Hopefully tommorrow will be an even better day if he can get a swim in.
Most of you who read regularly know I always ask for prayers for all of the kids in the hospital. Tonight I'm asking you for special prayers for Michael's Great Aunt Dolores, my Godmother. She was diagnosed last summer. Her CT Scan last week shows more disease. She is so weak and tired and must start Chemo again on Friday. Please when you think of Michael, think of her this week.
Thank you all for checking on Michael.
HAve a good week.

Sharon

Tuesday, June 7, 2005 11:01 PM CDT

It's 12:01am our time, June 8, 2005.
HAPPY 11TH BIRTHDAY MICHAEL!!!!!!!!!!!!!!!!!!!!!!!!!
I can remember that day so vividly. Michael was a C-Section baby and everything was perfect from his perfectly round head to his "big" feet.
Today, 11 years later Michael is still perfect to US!
Considering all he has gone through he still has such a great big heart and compassion for everyone else.
I am truly blessed to be able to celebrate the day with him.
He is going to have a pizza party at school outside in the garden with his class. He will head to "THE YARD at 5th Street" for his baseball game. I'm sure his day will be filled with many suprises.
Today he participated in field day with his class. The heat tired him out a bit but he rested.
I can't wait till he wakes up in the morning to give him the biggest birthday HUG ever.
WE LOVE YOU MICHAEL......CELEBRATE IT'S YOUR DAY!!!!!!!!!!!!!

June 9th 2005
Michael's birthday was just wonderful. His class was so happy to see him and celebrate. It was really hot outside in the garden. He came home, cooled down and headed to his baseball game. They did not win but they will have another chance on Thursday. Michael came home and had a Carvel cake. He received so many nice presents . Thank you all.
Today he had to go into clinic and he got blood and platelet transfusions to carry him through the weekend. His white count is just not budging. The playroom had a celebration for him today as well. That perked him up a bit.
Tonight he went back to the ballfield and his team did not win. They had a terrific regular season. Michael is already winner for getting there and doing what he can considering all that he's going through. Michael - YOU ARE A TRUE CHAMP!!!!!!

Sunday, June 5, 2005 10:07 PM CDT

Since the last post Michael is feeling a bit better. Dr. Kushner doesn't see the need for radiation right now. The radiation that was done in February shrunk what was there a bit , but there is still disease in his jaw. It now measures 2.3cm x 1.1cm He has been taking Tylenol on a daily basis which helps releive the pain. I think he has more pain than he's letting on to have.
And he's still getting platelets a few times a week.
The white count doesn't seem to be going anywhere even with the shots.
On a non-medical note Michael had fun playing his baseball game today which they won 7 - 3 . They continue again on Wednesday, June 8th. What a great day for baseball- MICHAEL's 11th BIRTHDAY!!! With the help of God, he won't be seen anywhere around clinic that day!!!
We also went to the Tommorrow's Childrens Fund picnic after the game, it was really nice to see all those who Michael was treated with and by in Hackensack Hospital at the beginning of treatment. They really go all out and the kids have a super time. Michael and Anthony spent alot of time with their friends Neal and Catherine who are really special.
He's had a busy day and hopefully a goodnight sleep awaits him. He has a clinic appointment in the morning and he's usually tired getting over there.
This is a great week for him to look foward to with his birthday and hopefully a Championship season that he so much deserves.

Warmly
Sharon

Saturday, May 28, 2005 8:29 PM CDT

Since Monday's journal update Michael has spent almost the entire week going back and forth to the hospital including today's visit to urgent care.
On Wedensday morning he woke up with a fever, we were heading to clinic for platelets so I had planned to stay and be admitted. Once he was seen in the exam room by the nurse and doctor, Michael was very upset to have to be admitted and miss his baseball game on Thursday. Deep in my heart I knew how important the game was to him and agreed that we wouldn't put him inpatient. Michael's cheek has been swollen again and I asked if he could have a CT Scan to check on it. Unfortunately it's not what we wanted to hear.. the disease is still in the soft tissue of the mandible(jaw). I am not certain at this point if radiation will be an option. We will discuss if further on Tuesday in clinic . He was given antibiotics and we returned to clinic in the morning for another dose as well. He played the game which they won 6-3 and clinched 1st place. Friday he returned to clinic with no fever and they gave him some more platelets for the weekend. After spending a few hours with our friends Harrison,Gina and Rose;Michael said he was ready to leave and that he was warm sure enough he had a temperature.
Being that he had antibiotic in the morning and understanding that Michael would like to avoid an inpatient stay we were able to stay home through the night and go to urgent care today to have blood drawn and get some more antibiotic. He missed the beautiful day today , but got to watch the Yankees play. His counts are still bottomed out with a White COunt of 0.7. He is so worried that he will have to spend his birthday (June 8th) inpatient.
We are back home tonight and will have to continue to watch him.
As all of this is going on with Michael right now he really needs to keep the prayers coming . He is being so stoic and not wanting to take anything for the pain in the jaw.
Hopefully he can remain home and this fever issue will be resolved.

Warmly
Sharon

Monday, May 23, 2005 9:28 PM CDT

Things are still looking the same in the count department, Michael's platelets today were only 8,000 (transfusion needed of course). His white count is still at .6 even on double dose of GCSF for two weeks. I'm so worried about an infection or fever. He's got pink eye in both eyes and some wheezing in his chest , they both added two more medications to take. He's not happy about the eye drops.
He also mentioned today that his mouth was hurting him again. The hospital thinks it's the back right molar coming in still. I'm worried that the NB is back again.
He played 3 innings in his baseball game on Saturday and they won! Tonight he kind of just wanted to chill out and watch some TV all curled up in bed. He's been a bit tired.
All those who have been praying for Michael, PLEASE continue to pray extra hard that the white cells come up.
He really needs to get started on the Temador (Chemotherapy)
as he has been waiting 3 weeks so far.

Thanks for checking in.

Warmly
Sharon

Thursday, May 19, 2005 9:52 PM CDT

I think we are starting to see the old Michael back. YEAH
The feet aren't hurting and his appetite is GREAT, with the exception of having to follow a neutrapenic diet (no fresh fruit, vegetables or TAKE OUT) Michael had his friend Jonathan over today and they had fun playing . Yesterday he received a platelet transfusion .His count was only 4,000
his finger even bled from the fingerstick .He had blood all over his shirt ,hand and Playstation inthe playroom.
Saturday his baseball team plays right now they are in first place. We'll post tommorrow an update of counts.
Please keep praying for Michael and his other NB Warrior friends.

Sharon

Monday, May 16, 2005 10:30 PM CDT

Thank goodness we made it home by 8pm last night, just in time for MIchael to watch the finale episode of Survivor. I think that this is the 4th season he has followed the show. He was even more excited that TOM won that's who he was routing for all along-Way to go NYFD!

He is feeling pretty good. Being home with an ANC of .1 does make me a bit nervous that he'll pick something up.
If it makes him happy to be home- I'm happy:)
He slept quite late today and then decided he's like to go to the park fishing. It's so peaceful and relaxing to him.

He will return to clinic on Wednesday to have counts checked and probably again on Friday.
I think we're going to have to start doing the white cell dance, whatever works!!!
His teachers stopped over today with some cards from his class and Ms. Wolf's. Those kids really can write some special things. We may plan an outside activity with them so Michael can see his friends while waiting for some counts!
Check back soon!
Thanks
Sharon


Just realized that I never replaced the Main page photo, I get one up this week
For now I guess Frankie and Anthony are in the spotlight.

Saturday, May 14, 2005 10:35 PM CDT

Just a quick update. Michael is still inpatient. The white count is just not cooperating with him. He thought he would be able to go home today but they changed their minds. He was very disappointed. Michael has a history of taking a long time to get the counts to come up. We will be breaking the rules if the doc lets us go home with a low count but he knows Michael has had it with the inpatient scene.Frankie and Pop came to visit today , Michael fell asleep on them right before they left. I think because he was disappointed about not being able to leave.Hopefully tommorrow counts will be up enough to get him home. He says he's bored. Please continue to pray pray pray for white cells. We can give him platelets and blood but the white cells he needs to grow on his own!

Warmly
Sharon and Michael

Thursday, May 12, 2005 5:48 PM CDT

I'm happy to report that Michael is feeling a bit better. He did not run a fever through the night and did not have one today. His counts this morning were very low so they decided to repeat them around noon time and they are slowly on their way back up with the help of some GCSF. He had a pretty good appetite today, eating a steak with A1 Sauce and some white rice with Soy Sauce. Thank goodness Food Emporium is near, the hospital doesn't carry the sauces he likes. He had alot of hospital company today: the clowns, the NY Aquarium , Fr. Steve, Diane, Vicky, Fran ,Jay and his Nurse Practicioners from the Day Hospital stopped by.
He was entertained by all and did alot of laughing. Hopefully if the cultures remain negative and he doesn't spike a fever we can go home tommorrow. Thanks prayer warriors, keep them coming.

Sharon

Wednesday, May 11, 2005 9:51 PM CDT

At the beginning of the week we thought we would get a break by only going to clinic twice this week. Unfortunately
Michael didn't feel that well yesterday later on in the day so I changed his appointment to this morning. We headed in thinking he'd get a blood transfusion and we'd be on our way home in a few hours. Not the case. It started in the fingerstick lab not being able to get much blood from him, then he was cold, by the time we got back to the examine room he started to get the chills and shake. He had a temperature of 100.6 and he blood pressure was low.
Even before they said he would have to be admitted he knew it and began to cry. They cultured him right away from the mediport and his arm to check for bacterial infection and started antibiotics as well. He also received a bolace of fluid and the blood transfusion. He was coughing alot too and has been for about a week so another chest xray was ordered and a bag of platelets. We finally got on the inpatient floor at about 5:00 pm. The good thing is he has a single room. Dr. Kushner popped over to say the xray looked ok. It's tending to look like some sort of infection. Please continue to pray that this is resolved and he can be home by the weekend. It's really scary when you haven't experienced some of these symptoms in the past six years. I will update when we have some results tommorrow.
Thanks
Sharon

Saturday, May 7, 2005 5:46 PM CDT

Since my last post on 4/29 Michael seems to be feeling a little bit better. His feet still hurt him and he really doesn't seem to have an appetite. He started taking the Thalidomide and Celebrex on Monday. We thought we would start the Temador this week but his white count still seems to be too low. He is getting shots of GCSF which is causing the platelets to remain low. On MOnday we will introduce another drug, Tarceva and hopefully this will all be well tolerated. Despite the drugs and the foot pain, he played in his baseball game today and got an RBI. Way to go Michael you should be proud of yourself! On Thursday he graduated from the DARE program at school and was able to participate in the ceremony. A special thanks to Officer Jay Whitaker for making that happen.
A special thanks to Michael for wanting to accompany Mom to the Regis and Kelly show on WEdnesday. Our friend Denise won the tickets to the show and gave it to Michael and I.
As part of a Mother's Day Suprise, the entire audience won a cruise with REgis and Kelly. Thanks Michael, for not taking my advice to leave the line. Hopefully Michael will feel well enough to go and we can work out arrangements to get him platelets when they dock in Philly, 6 minutes away from CHOP.Frankie and Anthony will be able to accompany us.
I would like to end this post by wishing all MOMS a Happy Mothers Day especially those who have children in treatment and are struggling everyday to win this fight and for those who have "ANGELS". May God watch over each and everyone of you and bless you. I found this on another webpage and thought I would share it with my fellow NB moms who are so dear to my heart!

The Chosen Mothers
by Erma Bombeck


Most women become a mother by accident, some by choice
and a few by habit. Did you ever wonder how mother's of
children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth
selecting His instruments for progagation with great care and
deliberation. As He observes, He instructs His angels
to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, partron saint Greard."

Finally, He passes a name to an angel and says, "Give
her a child with cancer." The angel is curious. "Why this
one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer
a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will
drown in a sea of self-pity and despair. Once the shock and
resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling
of self-independence that is so rare and necessary in a mother.
You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that. This one is perfect. She has just
enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child
occasionally, she'll never survive. Yes, here is the woman I will bless
with a child less than perfect. She doesn't realize it yet,
but she is to be envied. She will never take anything her child does for
granted. She will never consider a single step
ordinary. I will permit her to see clearly the things I see....ignorance,
cruelty, prejudice....and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

Friday, April 29, 2005 11:23 PM CDT

Many of you have been checking and waiting for a new post since our visit to Philly this week. It's taken me a few days to really think about the post. Unfortunately, ABT751 was not the right drug for Michael. His scans show no sign of improvement. The same spots that were there 6 weeks ago ( right arm, left shoulder, left knee and tibia and right tibia)are still there and some are more prominent on this scan. There is also something suspicious in the abdomen and the left rib cage. It's sad how Michael suffered with nausea, vomiting ,fatigue and neuropathy in the past six weeks to not see any improvement. He is happy to not have to take ABT anymore. Monday he will start the Thalidomide,Celebrex combo and add Temador when his white count starts to come up a bit.
Thank you all for praying for Michael, please continue to do so and we continue to fight NB!

Warmly
Sharon

Tuesday, April 19, 2005 12:11 AM CDT

The weekend was sort of rough again for Michael as his stomach continued to hurt. He took the anti-nausea medication around the clock but that didnt seem to help.
Last night he started to perk up a little. He spent a long day in clinic, blood, platelets and some fluids.
Today is better, he ate a Pretzel with Cheese from the Mall.
The boys were very excited to see page 38 in NEWSWEEK Magazine- April 25th Edition- they were they photo on that page. The boys have really given so much effort and cooperation into spreading the word for SuperSibs, and organization for siblings of children with Cancer. You can also view it on their webpage www.newsweek.com
Frankie was quoted in the article as well.
Tommorrow we will head back to clinic to have counts checked.
Please continue to pray that all goes well in Philly next week. Michael has a scan on Wednesday there.

Warmly
Sharon

Friday, April 15, 2005 8:09 PM CDT

I was hoping Michael would have a better time this round, but things seem to be the same. The nausea has kicked in and he just feels awful. He had a good week for Platelets, only needing a transfusion once. Today he did need some fluids because he's not eating again. He really wanted to go fishing in the park today, so we went for an hour and his stomach started to hurt. He bought all new fishing gear:a pole, tackle box, hooks and sinkers and some really cool sunglasses. He'll catch that whopper this year I'm sure.
Frankie has a Rugby game tommorrow and Anthony has a soccer game! Here's hoping you have a wonderful weekend.

Warmly
Sharon

Sunday, April 10, 2005 10:47 PM CDT

I am very pleased to write that Michael started the 2nd round of ABT751. We met with Dr. Maris on Friday and Michael started the drug Friday night. I started him on Zofran right away this time so he doesn't complain of nausea. Today is day 3 and he really isnt complaining yet.
He had a super weekend playing baseball on opening day at Cal Ripken, his team lost 1-0 in an extra inning. Who cares, Michael was there ,in uniform and played the game!!!
GO MICHAEL!!! Today we went to the NY Yankee game thanks to tickets from Bobby D. from Cal Ripken. The day was beautiful and the seats were pretty good, the Yankees suffered a 7-2 loss. Tonight Michael worked on his DARE Program with Officer Jay. DARE is a drug awareness program for 5th graders in our town. Being Michael missed many classes they wanted him to catch up so he can be part of the graduation this month. One more class to go and he'll be set. Tommorrow we'll head over to MSKCC to get a CBC ,possible platelets as well.
The boys are on Spring Break this week so I'm sure we'll find something fun to do.
Until the next post, be well

Warmly
Sharon

Monday, April 4, 2005 9:16 PM CDT

I am very happy to write this update. Michael has been feeling REALLY well the past few days. His appetite has come back as well as his energy. He has been talking up a storm for the past 24 hours about anything and everything.
He was really happy to see the Yankees start the season yesterday and watch Wrestling at the same time.
His counts are holding quite well. He did receive platelts and a blood transfusion today. Michael saw some very special friends at the hospital today. Please pray that they receive good scan results.
We got into Bayonne around 4:30 and he wanted to try baseball practice. Being has just got platelets he went!
WE saw his Floor Hockey coach and he told him tonight was the big championship game. Michael hasn't played a game all season because of not feeling well and counts being low.
He made it just in time to get in some playing time.
Needless to say they won the championship and received 1st place, Undefeated trophies. We Frankie came home from Rugby practice he also had a suprise for Michael. A classmate of Frankies had his dad get an Autographed football of the NY JETS along with an offical Chrebet jersey and a baseball cap autographed by Martin. The Jets are Michael's favorite team. In all, Michael had a wonderful day. His energy, attitude and strength are such wonderful gifts . I hope we can continue like this. On Friday we will go to Philadelphia and pick up the 2nd round of ABT751. Hopefully this is the answer for more wonderful days like today was !!!

With Thanks,
Sharon

Sunday, March 27, 2005 4:38 PM CST

Happy Easter to All!
Michael hasn't been feeling well the past couple of days. Since Wednesday , he's been nauseas and very tired along with vomiting. Friday in clinic I thought he would need platlets but they were at 56,000 which was post transfusion and probable concentrated because he was a little bit dehydrated. They gave him 2 bolace bags of IV fluid.
He insisted on seeing Frankie off to Ireland, we had to bring him to school to get the van to the airport. He really wasn't in the mood to color eggs, which is usually something he looks foward to. Hopefully tommorrow he will perk up a bit. It's been 72 hours since finishing the last dose of ABT751. Frankie called today from Ireland and he seemed to be having a good time. He's missing homecooked food. The plane ride was long and he was tired.
Anthony went to Connecticut with Dad and will return later tonight. Michael and I watched Shark Tales ,he got that in his basket.
I hope he gets his appetite back soon, it's just not Michael to not eat.
I am truly blessed to be in this journey with Michael. His older brother Frankie wrote an essay for school this week which I think is appropriate to share today, Easter Sunday.

" The story of Jesus' suffering is well known to most of ushere today. His death, burial, resurrection is not only taught at Prep, but spoken abouth throughout our lives. Whether or not you believe that Jesus was divine, historical documents prove that this man suffred on a cross. There is no doubt his pain was real. You may ask yoursel"How can a man endure so much pain and not complain/" Let me tell you of an example I see of that in everyday of my life- MY BROTHER MICHAEL.
Michael is ten years old. He is a victim of childhood cancer for 6 years now, ever since at a family party he wouldn't eat his favorite meal of spaghetti and meatballs, of course every Italians favorite meal. I speak humorously only to ease tension for a moment, for Michael's tale is not at all funny or humorous. Michael is not supposed to be here today. Doctors gave us a time frame for him to live in probably months, not years. his first treatments started at age 4 1/2. Six rounds of toxic chemotherapy entered his small body. HE lost so much: his hair, his weight, his muscle mass and his ability to fight disease - but not his smile. After an ordeal of two years indescribable to words, the doctors pronounced him to be with no evidence of disease, meaning that while active cancer cells existed within him, no malignant' tumors were forming. Despite this news, my family was about to be broken apart.
My father wanted a divorce from my mother. They were just not compatible people. This experience of seeing my parents split up just after the supposed healing of my brother took the wind out of my sails. Today he and I are closer than ever, and that is because of the divorce, but for those two years of pain and fear, I never felt so miserable.
The summer of 2002 was hell for me. On top of the fact that my family was now split, my brother's cancer came back. Much like Jesus falling for the second time, my brother was back in the hospital with cancer in his bone marrow. Those who paid attention in Mr. Z's biology class know that blood seeps into marrow constantly. Theoretically, Michael's cancer could spread to every inch of his insides. Doctors worked quickly to save Michael; radiation and experimental treatments occurred over another two year period. At one point Michael was in the hospital for Christmas, New Years, and during the NFL playoffs where his favorite team, the Jets blew out the Colts 41-0 in the first round. I remember that score because Michael said to me "41" points , like 1 point for everyday I have to stay in the hospital and an extra one for GOOD LUCK." Yes buddy- you needed luck that year. You needed luck ,faith and medicine.

In the midst of all this I was growing up. I turned from a selfish ,whiny 5th grader at the onset of his disease into a mature,quiet graduate at the end of the second coming of cancer. My entry into high school filled me wit hope; the summer the HAP program provided me with confidence and self-esteem that was sorely lacking prior to that. My eighth grade year I started making friends, cut my hair different and due to the growth spurt that comes in age, looked significantl better than before. I felt good about myself for the first time in long time. PREP, with all of its wonders and struggles, helped me get throught Michael's disease and my parents separation. Mr. Rowan and Fr. Azzarto were always there to go talk to and numerous amounts of other teachers understood what I was going through and helped me. This is not yet a happy ending though. Over the past summer, Michael's cancer came back a third time.
I recognize that Michael may never regain his health. But like my faith in GOD, I believe he has a purpose. His body is now ravaged with tumors-they are small yet present in his knee,spine, rib,jaw and shoulders. Yet,he lookds as healthy as any child you would see in a grammar school. His smile is infectious, andhis story is inspiring. He is tough. We as teenagers think its tough to put people down or throw bottles in the cafe, but that's not tough. Having an infection growing off of your tongue and not complaining about it is toughness.
As it says in St. FRancis'peace prayer, which I thankMr. Kosyzck for ingraining in my mind freshman year "Where there is doubt, faith;where there is despair,hope; where there is darkness,light" let my tale provide you with faith,hope and light. The next unkind word you tink of put it next to an image ofChrist hanging on the cross. Put it next to an image of a sickly-lookingboy with a smile because his favorute football team won. Michael has given my life a cause. Does your life have a cause? A cross we all carry is to fulfill our lives. Most of us don't realize how lucky we are to have that opportunity- to live freely, healthy, and to become educated and ready for life. I hope this story will help you reflect upon that and change things withing yourself and in others. Thank you. Please pray for Michael, that maybe the only thing he has left. Thanks again.
Written by Frank Romano, Jr.
11th grade- St. Peter's Prep

Monday, March 21, 2005 9:45 PM CST

Michael started his day off on the right foot not needing platelets today. Suprisingly, they were 30,000. He was transfused on Friday with a pretty big bag so I'm sure it was a good boost.
Dr. Maris emailed the official report of Michael's scan today and it read"Whole body images demonstrate several foci of mild to moderate increased radiotracer uptake as follows: both proximal humeri, right femur, proximal left tibia, lower thoracic and lumbar spine which have improved since the prior study. There has been MARKED IMPROVMENT overal with a DECREASE in the amount of MIBG avid tumor present on the scan.
Compared to prior study 11/04 there is marked improvement with fewer lesions identified as described above."

In November, Michael's scan showed several other areas.
I am happy and relieved that the radiation and combination of Temador, Thalidomide and Celebrex worked and he is now able to be on ABT751.

We still have a long way to win this fight but for now
Michael is kicking cancer's BUTT!!!!!

Saturday, March 19, 2005 8:26 AM CST

I am happy to report that Michael started ABT751 yesterday. He will not be part of a study, Dr. Maris had to get it for him on a Compassionate Release. Michael's platelet count did not qualify him to be on the study. We will have to monitor the counts closely while on this drug. There is a chance that the platelets will be affected. He'll be taking 4 pills once a day for seven days and than off for 2 weeks. On APril 8, we will return to Philly for a quick exam and to pick up round 2 of ABT. He will scan again after that round. As far as the scan from yesterday, we do not have an official report. According to Dr. Maris he said " it did not look that bad". There was a spot on each of his shoulders and one on the leg in the femur. He wasn't sure which leg and the computers were down so we couldn't even get a view. IF that is the offical report when it comes in next week , it certainly will be better than the last scan in November.
Michael and Frankie have been following the March Madness games. They both have picks and are in the "Fun" pool at MSKCC. While in Philly on Thursday Michael wanted to do some shopping. We headed downtown to the GAP. A very special woman had donated some money to Ronald McDonald House for kids to "HAVE FUN" so Michael had a little extra to spend. The Verizon Pioneers also provided a wonderful dinner on Thursday night. Michael enjoyed a nice nap in the car coming home. We all went to see the high school performance of "GREASE". It was the first time he had been to a play. Today he will attempt Baseball practice. Anthony has a party to go to. Frankie is counting down his 7 days until IRELAND.
So many of you have been praying extra hard for Michael in the past few months, please continue to pray that he continues to go ahead and hopefully beat this disease once again. Please continue to pray for our other NB Warriors,
Harrison, Jay, Celeste, Michael L. ,Gregory ,Christi .. their courage makes them all a HERO in my heart.

Wednesday, March 16, 2005 10:36 PM CST

Just a real quick update tonight.
Michael's mouth is feeling much better, the sores are almost gone. He's been rinsing a few times a day which really helps alot. Since last week he has gotten a few platelets transfusions and a blood transfusion . Today he didn't need anything. YEAH MICHAEL!!
He was excited to get home for his tutor.
He enjoyed a visit tonight from our friend Lynn from Tommorrows's Childrens Fund.
AS for tommorrow, Michael and I will head down to Philly in the morning for his MIBG Injection. Friday he will have the scan. Dr. Maris emailed yesterday that the FDA approved the ABT751 for Michael. Those of you who have been praying for Michael keep praying. His last scan was in November. Alot has transpired since then. I will post as soon as we get results from CHOP.
HAPPY ST PATRICK"S DAY TO ALL!!!

Warmly
Sharon

Tuesday, March 8, 2005 8:18 AM CST

Last Friday we visited Dr. Maris at CHOP and he is in the process of trying to obtain ABT751 for Michael. The paper work has been started. On March 17 I will go back to Philly with Michael for an MIBG injection and a scan on the 18th.
Hopefully, at that time he will be able to start the ABT which will be given at home , once a day in pill form.
Michael's mouth is really hurting from the Post Radiation effects. He's trying to eat but it bothers him.
The boys were very happy with their debut on FOX 5 last evening. Frankie thought it was "COOL" being on TV for that length of time. We'd like to thank Melanie for choosing them to do it. Michael is still having to go to clinc a few times a week for platelets, yesterday they were 9,000. Today he will have Home Instruction, hopefully we can convince him to go back to school when he feels up to it.
Please continue to pray for our warriors, so many of them are faced with very difficult times.

Warmly
Sharon

Monday, February 28, 2005 6:33 PM CST

Today was a pretty exciting day! Michael came home this afternoon and that just made our day. This morning Frankie and Anthony were interviewed by Dr. Steve Salvatore from Fox 5 News as part of a story to spread the word about SUPER SIBS. S uper Sibs is an organization for Siblings of Children with Cancer. We were fortunate to also have here the founder of Super Sibs, Melanie Goldish. Melanie flew in first thing this morning from Chicago to be part of the story. Also on hand were Kaylie and Michael from the Public Relation Firm that set this up. Michael came home a bit after they left. He really didn't want to be on the camera anyway. His mouth is really sore tonight , he's trying to get down his favorite dinner..Chicken Francaise
Tommorrow the kids do not have school and we don't have a hospital appointment so if the snow keeps falling we will have a PJ day!!!!!!!

Sunday, February 27, 2005 12:58 AM CST

Michael did have a ticket out of the hospital yesterday at about 5 pm, as they were going through the Holland Tunnel the doctor called to say that his Blood Cultures grew a postive bacteria. So, we turned around and went back to the floor only to find out that he needed to be admitted through Urgent care again. He's feeling fine and is on his 14th hour of sleep as I type this. Hopefully, he will be able to go home tommorrow after his last radiation and will be on HOME IV Antibiotics.

Thursday, February 24, 2005 11:55 PM CST

AS the snow keeps falling and about 6 inches is on the ground, Michael was taken into Urgent Care with a fever and chills tonight. Dad took him over. He had a pretty good day count wise. The White count and ANC both went up and he got his usual bag of platelets. After watching Survivor and eating chips and dip you would have thought it was a good night. I went to shut the light out he was up and was cold and needed to curl up under the blankets. With two more days of radiation left, he just can't catch a break.
Please continue to pray for Michael and for all of the NB Warriors.

Sharon

Wednesday, February 23, 2005 12:54 AM CST

The past week and a half has gone by quickly. Michael has three days left of radiation to the jaw. His counts bottomed out last week , forcing us to take him off of the oral chemo Temador.Even with 2 shots a day he had an ANC of 0. This week they have started to come up a little. He's had his normal platelet and blood transfusions. He hasn't been able to go anywhere but he has had some of his friends over and that really made him happy. When he can, he does have the home tutor coming. Next Friday we have an appointment with Dr. Maris in Philadelphia. There may be a possibility of Michael doing an off study treatment of ABT751. If he does start this, I just hope and pray it's something that will not cause him the many side effects that some of the other patients have had and that it will do something with the disease Michael is dealing with.
Frankie will be leaving for Ireland in 30 days. Anthony is reading and reading.
Until next post, be well.

Warmly
Sharon

Wednesday, February 9, 2005 8:42 AM CST

Just when I thought I'd be writing to say that Michael completed radiation this week and is feeling a bit better, my heart breaks to say that he needs to continue radiation next week with a new spot on his lower right jaw. He was set up yesterday with his face mask and was a real trooper about it. His counts are still very low but we came home last night. In our efforts to continue to fight we ask that you continue to pray for this little HERO.

Thanks
Sharon

Monday, February 7, 2005 4:27 PM CST

Dear Friends,
Michaelwas admitted yesterday with a fever of 102. After blood was drawn he also needed platelet and blood transfusions. He has a bit of a cough so a Chest Xray was done. The right side of his face was swollen over the weekend and the fellow on call ordered a CT of the face.
Michaels counts are totally bottomed out. He did get to watch the Superbowl in Urgent Care on a small TV.
I will post again tommorrow. Thanks for all who check in on Michael.

Monday, February 7, 2005 4:27 PM CST

Dear Friends,
Michaelwas admitted yesterday with a fever of 102. After blood was drawn he also needed platelet and blood transfusions. He has a bit of a cough so a Chest Xray was done. The right side of his face was swollen over the weekend and the fellow on call ordered a CT of the face.
Michaels counts are totally bottomed out. He did get to watch the Superbowl in Urgent Care on a small TV.
I will post again tommorrow. Thanks for all who check in on Michael.

Friday, January 28, 2005 10:12 PM CST

After today Michael has 7 more days of radiation. His white count has dropped and he is back to the neutropoenic state... He is at .5 and needs shots to boost him. He was much more cooperative today with the shots, thanks to Dr. Bovine and Dr. Swami (Clown Care Unit)for telling Michael jokes. He has to be careful with crowds and certain foods.
He did get platelets again today at a count of 9,000.
He was eager to get back to school for Pasta Day. He went but didn't eat anything. He said it didn't look good at all.
Frankie had a track meet after school today. The boys went to cheer him on. We think he might have earned a Varsity letter after running today.
Frankie also has a big day coming up this week, he will turn "17".
There are so many of our hospital friends struggling with treatment, please continue to pray for all of them as well.

Warmly
Sharon

Wednesday, January 26, 2005 10:46 PM CST

Michael's counts are beginning to drop after 5 days of radiation and a week of oral chemo. That was expected.
What he didn't expect was that he might need some GCSF- a drug to help boos the white counts. It is a "SHOT" in the leg. He was so upset. Nothing could even bribe him into doing it. In the end, he got it IV. It's not as effective but will do the trick. Yesterday he also got a platelet transfusion and today was a blood transfusion. He's been spending long days at the clinic. He didn't make it in to school the past two days. We'll shoot for tommorrow and Friday. He'll have his counts checked again on Friday to see what he needs for the weekend.
We were supposed to have dinner with Michael and Anthony's friend Harrison from clinic but we were all pooped after today. Instead, one of the dad's from the Cal Ripken Baseball league called to see if he could drop off a gift for Michael. It was nice to see him. The gift ... the most beautiful, one of a kind picture blanket It has Michael's photo knitted into the blanket. It sure is something to treasure. Thanks Iasparri Family!!!!!
So many people have called to let us know that Michael is on their prayer list. Please continue to pray for him.
The pain is much better and I'm sure radiation is part of it. He has alot of special people watching over him.
It's supposed to be about 3 degrees here tommorrow.
If the Beckers are reading in Florida, sunshine sounds really nice!!!!!
Until the next post, be well...
Sharon

Monday, January 24, 2005 8:42 PM CST

It gives me great pleasure to finally write that Michael is feeling better today. He had his third radiation session, his TEAM 242 are a great bunch of people to have working with him. He also decided he was going to school this afternoon. After his McDonald Happy Meal he walked into Midtown with a big smile on his face. He was laughing and dancing all around tonight. I hope that is a good sign.
Tommorrow he will have his counts checked. Hopefully they are stable after a week of Oral Temador. He really enjoyed the snow this weekend. He has his favorite red shovel. WE even attempted to go to the park sledding. It was really cold and he was getting tired going up and down the hill.
The football game and some snacks made him comfy for the evening.
Frankie has good news to report today he got a 98.5 on his US History 1 Exam. YEAH FRANKIE!!!!!! The rest of the marks were pretty good as well. Keep going Frankie Colleges AWAIT you!!!!!!!
Hopefully I will report at the end of the week with the same good spirits.
Keep Warm!

Sharon

Wednesday, January 19, 2005 10:09 PM CST

Six years ago today Michael was diagnosed with Neuroblastoma. As I thought and reflected today about what he's gone through over the years my heart ached thinking how much this child has endured. I also saw beauty in it.
I saw the gift of a child who still laughs, is strong, brave and courageous and loves life. Through this dreaded disease Michael has brought joy to so many people in so many places. He has made so many friends who have been so kind and generous to us. We love each and everyone of you. If we had a choice, we'd trade it all in for a life free of disease for Michael.
I never knew that we would have a child who would inspire so many or be called a "HERO".
Today was the first day in awhile that Michael actually woke up early and wanted to go out. He was planning to go to the mall for new workboots. We headed to Newport Mall , I did have to push him in the wheelchair but he had fun. We had lunch and he bought another necklace to add to his collection.I stopped by school with him and he did not want to visit his classmates. He usually loves school . We're not sure why he doesnt' want to go.
Tommorrow he begins the start of radiation. He will have 3 areas done over a period of 14 days. His pain is better than last week. He asks for medicine when he really needs it. Monday he was so brave. He stayed still on the table for about 3 hours getting set up for radiation. He needed to get tiny tattoos on the areas. In all he had 18 pokes with a tiny needle.
He also started Oral Chemotherapy at home.
Last Friday night the Bayonne Local PBA#7 hosted a Texas Hold Em Fundraiser for Michael which was a big success.
I'd like to thank all of the Police Officers, Firemen, Bayonne Cal Ripken BAseball and everyone else who attended. To those who won and returned their winnings WE THANK YOU!
Officer Mark Fabbracodorde, a DARE Officer and his family put in many hours to make this a success.
The teachers at Midtown Community School have gone above and beyond to make Michael feel a part of the MAGIC.
If anyone knows who "MAGIC" is we are taking care of him for a few days!!!! The sixth grade and Mrs KP made Michael a beautiful FRIENDSHIP QUILT. It's just amazing the love that pours out for Michael.
With the amazing team behind him his spirits are amazing.
He's had visitors the past few days and he really enjoys the company.
I will continue to post as treatment continues.
Stay warm and watch out for the storm coming!!!!

Sunday, January 9, 2005 9:33 PM CST

This past week has been one like Michael really hasn't had in a long time. Last weekend he started with the mild pain in the chest and then complaining of pain in the lower left part of his back. Monday he went to school and got a nosebleed. I immediately took him over to NY know his platelets were probably low anyway. He got a platelet and blood transfusion and left clinic at about 6 pm. That was his choice so he didn't have to go back to clinic in the morning and get to school instead. When he woke up on Tuesday he ate some cereal and said "I can't go to school my back really hurts" He stayed home and rested most of the day. Tuesday night it felt worse. He had a hard time sleeping. Wednesday morning he couldn't get out of bed without help. But, he made it to school for his first official school ID. After that on out way out of Bayonne we had a flat tire in the pouring rain. Thanks to the cooperation of the guys at Firestone, he changed it right away and off we went.
I called the clinic and they scheduled an MRI for noon time. He wanted to be pushed in the wheelchair because it hurt to walk. He was seen be a neurologist as well. He felt that there wasn't a need for a spinal MRI. They ordred a pelvic one because of the location of the pain.
We left the hospital with a prescription for Morphine.
Thursday we were home. I called clinic to check the status of the MRI. I was happy to hear it was negative. In the meantime I spoke with Dr. Russell and she was concerned and thought if the pain didn't stop we may have to fly back to Houston. Friday Michael returned to clinic for platelet count and transfusion. I asked for the copy of the MRI report as I usually do and to much suprise it had changed from the day before. For about 24 hours I seemed to be hopeful. The official report shows Extensive disease in the pelvic area. I don't know what else to say but
Michael needs your prayers. We will know more this week when we hear from radiology about setting him up for radiation. He is still scheduled to have his mediport put in on Wednesday. I'm sure he will be needing more platelet and blood transfusions if you or a friend are interested please call 212 639 8177 Marion Novak to make a direct donation. I will update in a day or so with the plan of treatment.
Not to change the subject but I forgot to mention special thanks on the last post to my family and friends who helped unpacking and decorating the apartment for me and the elves for making this just perfect!!!!
Also, Thank you to everyone who has been helping with Anthony getting to school and home,Frankie's rides home from Track, those who have picked up groceries ,cooked a meal and even our very special friend who has been doing laundry in the time I didn't have the machine. And to Midtown Community School, there are no words to express how SPECIAL Michael thinks you all are. We love you ALL!!!!!!!!!!

Saturday, January 1, 2005 10:03 PM CST

Happy New Year!
The Christmas break has come and it's almost time to go back to school. The boys had a wonderful Christmas . Santa brought them pretty much what they wanted and more.
As I look back on 2004, the year seemed to have started off on the right foot with Michael being a year post transplant and hoping we'd see some rise in his platelet count. The spring began to roll around and baseball season looked good. Anthony played for the first time in the Instructional league and Michael in the Majors.
In May, during a routine 3 month work up the most devasting call was received that Michael had a tumor on his spine. Just when we thought we could try and get a move on from this disease it had returned. He began Oral Chemotherapy and radiation for weeks. Despite the hospital visits Michael played baseball and made sure he was part of the end of the school year class trips.
In between all of that he turned "10". ( Yes Michael, you are a perfect "10")
In July he started CEP701 , a CHOP protocol. The tumor was gone after one cycle. We thought we'd been given another miracle. Soon after the liver functions started to elevate and Dr. MAris tried to hold off before pulling him off of the trial. After 3 months of up and down LFT's we were once again heartbroken to see that the disease had progessed in the marrow. Our choice now- TEXAS for treatment. In the midst of all of this Michael is in school, was playing basketball until his mediport became infected and now has a temporary broviac.
Our HOPE for the New Year is that the Texas Therapy finds a way to get these NB Cells. As you can see from the picture (which I have to try and make smaller- Sorry!) Michael is still all SMILES....On January 12th he will have a new mediport placed and on January 25 and 26th he will have a complete work up to check the status of his disease.
I know many of you have Michael on your own personal prayer list every day and have passed him along to your friends as well. The next few weeks he needs all the prayers to get him back in the right direction.
I ask that you also keep in mind his very special friends that are struggling with disease as well. They are all HEROES in our hearts.
May the new year bring you peace, joy, love and good health! And may the friendships we've made this year continue to grow. Michael has been blessed with so many wonderful people in his life and for that we are ever so thankful.

Friday, December 24, 2004 5:55 PM CST

Our trip to Texas is now over and we will have to wait six weeks before we even know if the therapy has worked or is beginning to work. Michael really enjoyed it there. On Sunday he went horse back riding at RMDH. A rand in Texas came with 10 horses and ranchers to ride the kids around. Michael's horse was named "Angel" . He rode her for about an hour and a half. What a smile he had. She even had braids in her hair with red bows. On Monday we went to the Mall and he bought some new sneakers.Tuesday we spent the entire day from 9 am to 6 pm getting platelets so he could fly home. His were only 8,000. On WEdnesday we saw Dr. Russell and had some labs drawn.Platelets went to 98,000.
We headed to the airport and had a flight to Atlanta GA.
We originally had about a 2 hour delay. 2 hours turned into about 4 hours. We landed at 2:30 am. Despite the late night Michael wanted to go to school on Thursday. He really missed his friends at school. Thanks Midtown for all of the love you've shown Michael.
So as families gather for Holiday celebrations, please remember to pray for our "Warriors" fighting the NB fight, for our soldiers overseas, those families whose warriors are now ANGELS , the hungry, homeless and less fortunate.
I am truly blessed with so many wonderful people who have helped make Christmas special for the boys. Our tree is up, decorations around but most of all we are all home together to share the Celebration of Jesus' birth.
With Love,
Sharon

Wednesday, December 15, 2004 5:25 PM CST

I am happy to report that Michael's infusion went well today. he started the day off with a chest xray for FDA purposes, to check the size of his heart. Michael was given premeds which put him to sleep for pretty much of the afternoon. Dr. Russell was very excited to administer the infusion today, Michael was the first patient to start this study. The side effects were very mild and less than what we expected. A slight bit of shortness of breath and he also vomited once.. He did not have any pain. We waited around for about 4 hours to watch him. His nurse Darilyn was extremely cautious and made sure he was comfortable. He has the smell of "corn" excreting from him. It's the preservative they use when they freeze the cells, same as what is used in transplant.
He woke up in a pretty good mood and ate his lunch and played video games. On Friday he will probably need a transfusion. We can only hope that this treatment will do Michael some good. Dr. Russell cannot promise anything. He will be monitored at home with draws for 6 weeks. At the end of the six weeks a complete work up will be done.
In the CT scan he had yesterday there seems to show a small tumor on the outside of the lung, in the pleural area. Dr. Russell was not so alarmed by it and she was happy to see that there were no other tumors elsewhere.
At this very special time of year we pray for peace, hope and love....
thank you all for helping and praying for our HERO!!!!!

Warmly
Sharon


On Thursday we kind of just did some fun things. At lunch time a very nice group of ladies served Tamales and Chile for lunch. Michael and Frank played some video games. A little bit later on we went to the Children's Museum of Houston. Lastnight we went to Michael's favorite resturant in Houston, OLD SAN FRANCISCO STEAKHOUSE.
He went on stage and rode the swing.
This morning we are in clinic and waiting for blood count results to see if he needs a blood transfusion. Tonight we will try to go to the Houston Rockets game. He is really feeling good and has lots of energy and good spirits.
We miss you all!!!!!!!

Tuesday, December 14, 2004 8:29 PM CST

So many things have happened since my last update. I'll write more about that at a later time. We are now in Houston Texas. We arrived last night and had a CT first thing this morning. After completing that we headed to clinic , waited two hours for a blood draw. Of course Michael needed platelets. His NY routine he gets Vistirol in pill form, they didn't have that here and hehad to take a pretty big syringe of liquid. UGGH He was very upset and crying. In the end, he took it like a trooper. We headed to the RonaldMc Donald House here to find out that Yau Ming from the Houston Rockets was here serving dinner. Boy is he tall!!! Tommorrow we will see Dr. Russell and Michael will get the infusion we have been waiting for. My hopes and prayers are that this is going to work for him. Please continue to pray for him during this most difficult time. We will return on Wednesday the 22nd. Our email will be limited here. If you would like to contact Michael via Mail we are at ronald McDonald House of Houston
1907 Holcolme Boulevard
Houston Texas

Room #37

Or our new Home address is 36 West 37th Street, Bayonne NJ
He love getting mail.
I hope this gives a brief update of where we are.
Happy Holidays

Sharon

Wednesday, November 24, 2004 10:58 PM CST

Just a very quick update for tonight.
Most of you have been following the website for quite some time now. As you know Michael started CEP701 in July 2004 and had some success until the LFT's(liver functions) began to elevate and the dosage was reduced. It's been a roller coaster ride for the past few months with it.
Today, Michael was officially taken off of it by Dr. Maris.
The numbers were still high in yesterdays blood draw, platelets were 9,000( and transfused) and todays MIBG scan shows progression of the disease. This is not the news we were waiting to hear. It's a very big roadblock for Michael right now. Dr. Maris will be contacting Texas to see when the vaccine will be available and if Michael will still qualify to do it. ABT in Philadelphia is also available.
We have not searched any options with the docs at MSKCC.
Michael really needs some extra prayers. I know all of you ALWAYS pray for him and put him on prayer lists.
He will need to return to Philly next week for CT SCan and Bone Marrows if he starts the ABT soon.
Even though this news is heartbreaking, I'd like to wish all of you a Happy Thanksgiving.
I am truly grateful for the family,friends,doctors,nurses,teachers,neighbors who have been a support for us during this time.
May you continued to be blessed during this holiday season.

Warmly,
Sharon

Thursday, November 18, 2004 9:56 PM CST

This weeks clinic update is: platelets on Monday and Red Blood Cells on WEdnesday. The liver functions are still elevated and will be checked again on Tuesday in Philadelphia. Dr. Maris is comfortable keeping Michael on CEP and that the levels are in no way harmful to him. I guess everything will be based on the MIBG scan on Wednesday.
The boys got their report cards this week and they did well. According to Michael's teachers he is a bit chatty in the class and he has a great sense of humor.
WE need many prayers of Thanksgiving this coming week that Michael will be blessed with an improved MIBG scan.I will let you know what happens next week.

Tuesday, November 9, 2004 9:09 PM CST

Nothing much has changed since the last post. Michael had a platelet transfusion yesterday. The Liver Functions remained about the same. He will continue to take the CEP and will head to Philly to have an MIBG scan on Wednesday the 24th. He looks wonderful and is eating up a storm.
At clinic yesterday, there was a suprise visit by singer
Vanessa Carlton. She sang a few songs for the kids in the playroom. She is working with Musicians on Call -a group that sings for hospitalized children.Michael really enjoyed the music. For now we will just hold tight and wait for testing. Please continue to pray, not only for Michael but for so many of his friends struggling with disease.

Saturday, October 30, 2004 8:42 PM CDT

We had a little change in clinic appointments this week because of Halloween. Dr. Maris allowed Michael to have the blood drawn on Thursday. Michael needed a blood transfusion on Thursday as well. The good news is the liver function numbers were much reduced. I don't know if it's being off the Acyclovir for a week, or being off CEP for 2 weeks.
The plan is to resume CEP on Monday and monitor the counts. Michael will head to Philly probably around Thanksgiving for testing. He was happy to be in school on Friday and participate in the Halloween Parade and festivities as a "Cheerleader" . Anthony was Dracula. They both won prizes for their decorated pumpkins. Happy Halloween to All!!!!!

Tuesday, October 26, 2004 9:55 PM CDT

Michael's visit to Philadelphia on Friday went ok. His numbers were elevated a bit more than what they were on Tuesday . Dr. Maris is trying to hold on to CEP701 for Michael despite these numbers going up and down. He also took him off of Acyclovir. Michael has been on that for almost two years, it is a preventative so he doesn't get shingles. Usually when you come off of it you wind up getting them and have to go back on it. The good news is the numbers decreased today. Dr. Russell has also informed us that the Vaccine is finished and is in the final testing stages. I don't know when it will be given back to him.
Today was the regular Tuesday platelet transfusion.
On November 7th NYC will host the marathon. There is a group of runners called "Fred's Team" who run and raise money for Pediatric Cancer research at MSKCC. This wonderful group of people were in clinic this morning and the children presented them with Medals for all of their hard work and dedication to such a worthy cause. The founder established the "Aubrey Fund" in honor of is his daughter who is a cancer survivor and is running in her 23rd marathon. Michael's transplant nurse, Courtney is running as well as his doctor, DR. Kushner.
There are so many children who need extra prayers this week. Please keep in mind Michael and each and every child being treated in not only New York but all over. No child should suffer from this dreadful disease.

Tuesday, October 19, 2004 9:59 PM CDT

After a few late nights of watching the Yankees it was hard to get up and go to clinic this morning. Michael usually falls back to sleep in the car anyway.
He dressed in his Yankee apparel today to bust chops on Nurses Courtney and Sharon: Both are from Boston.....
Courtney had on her Red Sox shirt and Sharon wasn't in today. He's a real good joker!!!
Anyway, it was a usual Tuesday Platelet transfusion and labs drawn for Philly. By the time we left the results were back and the numbers were up again. Dr. Maris has advised us to take him off of the CEP701 until Friday. We will see Dr. Maris at CHOP Friday morning. Until then Michael is hoping the Yankees win Please continue to pray that all goes well in Philly.
A special thanks to the Bayonne Police Department for continuing to donate Blood and Platelets for Michael. He has been receiving weekly transfusions.

Saturday, October 16, 2004 4:29 PM CDT

Michael has made it through another week of CEP. The numbers are still about 3 1/2 times elevated but safe enough to stay on the drug. Michael did get blood and platelets on Tuesday. It was a very long day for him in clinic. At the end of the blood transfusion his port started to hurt. They stopped the drip and pulled the needle. The blood started to back up in his chest. This double mediport has been nothing but a pain in the BUTT from day one. Michael does not like it at all...
Tommorrow the boys will both represent their school in the parade. Michael dressing as Christopher Columbus and Anthony the Cub, the school mascot. They are both starting basketball. Halloween is just around the corner and I think Anthony will be Dracula and Michael , a pirate. Originally he was going to be a cheerleader!!!!!
Next Friday we will head to Philadelphia to see Dr. Maris.
Dr. Russell from Texas has also been in touch and the new vaccine is growing rather nicely. That may be an option for Michael down the road.
I'll post next week . For now have a great weekend and route for the YANKEES!!!!!!!!

Tuesday, October 5, 2004 10:24 PM CDT

Everyday we have more and more to be thankful for, despite the roller coaster ride we are on with Michael.
Last week he resumed CEP on Tuesday. On Friday his numbers were up again. He was 2 below having to come off of the CEP.
He did get platelets on Friday. Michael had his counts checked again today and Thank God- they were down to 143. So , he is able to stay on CEP for the moment. He is such a fighter. As much as he doesn't like to take it he goes with the flow. He had a really relaxing weekend at Point Pleasant. Michael just loves to fish. He and Anthony both caught one. Frankie excelled in Miniature golf and Pizza eating. Yesterday Michael was sent home from school with a stomach ache and today he sort of felt the same way. It could be the drug or just something viral. At least the plan is still going and hopefully it's working the way it should be. He will go back to Philly at the end of the month to scan.

Tuesday, September 28, 2004 9:20 PM CDT

It is with much relief that I write Michael has started taking CEP701 again today. Friday was a long and exhausting day for MICHAEL. THE PET SCAN TOOK A TOTAL OF ABOUT two hours and forty five minutes from beginning to end MICHAEL WAS EXTREMELY COOPERATIVE AND DIDN"T TALK FOR THE HALF HOUR THAT HE WAS TOLD NOT TO. WHILE HE WAS ON THE MACHINE THE NURSE FROM CLINIC CALLED TO SAY THAT HE NEEDED BLOOD AND PLATELETS, THEIR CLINIC CLOSES AT SIX O"CLOCK AND THEY DIDN"T THINK HE COULD GET BOTH IN. I KNEW HE COULDN"T WAIT UNTIL MONDAY WITH A HEMOGLOBIN OF EIGHT. WE HURRIED BACK TO THE MAIN BUILDING AND HE WAS HOOKED UP RIGHT AWAY AFTER THE PLATELETS THE ONE UNIT OF RED CELLS WAS STARTED AND WITHIN ABOUT TWENTY MINUTES HE BROKE OUT IN A FEW HIVES ON HIS ARM THE BLOOD WAS STOPPED HE WAS GIVEN BENADRYL AND MONITORED FOR A LITTLE BIT BEFORE STARTING AGAIN. WE FINALLY GOT HOME AROUND NINE O"CLOCK FRIDAY NIGHT.

FRANKIE WAS AWAY AT RETREAT WITH SCHOOL THIS WEEKEND AND WE ALL MISSED HIM. LAST NIGHT WE HAD TO PICK HIM UP AT PREP AND IT WAS A VERY EMOTIONAL HOMECOMING.
MICHAEL"S COUNTS WERE IN GOOD SHAPE TODAY AS FAR AS TRANSFUSIONS NOT BEING NEEDED IT TAKES SO DARN LONG FOR THE LABS TO COME BACK FOR THE LIVER FUNCTIONS. AT TWO THIS AFTERNOON THE NURSE PRACTICIONER CALLED TO GIVE ME HIS NUMBERS WHICH WERE MUCH LOWER.
I CALLED DR. MARIS IMMEDIATELY AND HE GAVE THE OK TO START AT A REDUCED DOSAGE. I AM SO GLAD THAT ALL TURNED OUT WELL. HOPEFULLY HE CAN CONTINUE ON CEP WITHOUT ANYMORE DELAYS. THANKS TO ALL WHO ARE PRAYING FOR MICHAEL AND HAVE HIM ON THEIR PRAYER LISTS.

Thursday, September 23, 2004 10:16 PM CDT

AFter a little bit of worrying yesterday, Michael's CT SCan was negative. Te radiologist just asked some questions that would lead you to believe that something was wrong.
Dr. Maris recommended that Michael have a PET SCan tommorrow as a double check. He is scheduled for 12:15.
He can't eat anything 4 hours before. That he is used to.
He also has to remain quiet for a half hour after he is injected. That might be hard. He was practicing today in the car. The Alt number was still high and will be drawn again tommorrow. Hopefully by the beginning of the week we will have some answers and a plan as to what treatment Michael will start on. He really needs some extra prayers.
He's been added on to so many lists this week. I will post tommorrow if we have any updated information. In the meantime he's eating up a storm, going to school and playing flag football.....

Tuesday, September 21, 2004 10:17 PM CDT

Tommorrow I am heading to Philadelphia with Michael to have a CT Scan done of the chest and abdomen. Since the last post ,his numbers for the liver function have not gone down even being off of the CEP701.The doubled from last Wednesday from 195 to 419 yesterday. His platelets are still low and he is requiring weekly transfusions. In conversation with Dr. Maris yesterday he is concerned that Michael's liver functions have not come down. There could be a few different reasons. The big concern is that there is no disease in the liver. There will also be some blood work drawn to find out if it is a virus of some sort.
Please pray real hard tommorrow that we come home with some sort of plan and that it is not disease in the liver.
Michael has endured so much already. Going from good improvement in July to this is worrisome.
I will post as soon as I have more information.
Thanks for being a part of Michael's journey!!!!
Warmly,
Sharon

Monday, September 13, 2004 10:04 PM CDT

For those who read Friday's journal entry, Michael was nver admitted into the hospital. They rechecked the blood levels and they had gone down so he was hooked up to some hydration and sent home at around 12:30 a.m.
He was seen in clinic today and he needed platelets being that they were only 16,000. It took a long time for the electrolytes to come back and we needed to wait for them.
He ate lunch in clinic and at around 1 :00 the labs were back. The liver function is still elevated. They kidney function went down alot.
Dr. Maris wants to hold off and retest levels again on Wednesday. This whole thing is probably drug related.
He will probably have the dosage reduced.
Just keep praying that things going in the right direction.
He was so mad that he missed school today. I was really proud of him that he did get his books and completed the homework assignments. The road is bumpy, but somehow we mange to get through it
Sharon

Friday, September 10, 2004 10:09 PM CDT

Michael left school a few minutes early today so we could get a head start over to NY. There was no traffic and we made it in record time. Fingerstick was done , labs were drawn and he was seen by Ursula the NP. His platelets were 33,000 YAHOO!!! no transfusion. The labs were not back yet regarding his liver function so Ursula said she would call. We got back into Bayonne around 5 and she called to say they actually went down a bit. YEAH!!! That was a good sign.
His urine markers from Philly last week are also normal.
When we got in the house Ursula had called back to say Michael needed to return to the hospital and be admitted because his Kidney functions were elevated. He needed to by hydrated and monitored. He was so angry.He's entitled by all means. He thought he would be out playing for the weekend and now he'll be attached to an IV pole.
I will post any new information on his status. Dr. Maris is out of town for the weekend but will communicate at sometime as to what is the next step regarding the CEP701.
Michael has never had these issues in 5 years of treatment. Please pray it's just a hurdle to get over and all will be back on track.

Sharon

Monday, September 6, 2004 9:54 PM CDT

Today would have been the start of the 3rd Course of CEP701 for Michael. Our visit to Philly on Friday showed a need to stop it for a few days. Michael's liver function was elevated and Dr. Maris isn't sure if it's the drug or just Michael. He will have his blood tested twice in New York this week on Tuesday and Friday. Depending on the level going down or not he will probably start it again next Monday at possibly a reduced dosage.
The MIBG scan still shows the spot on his arm and something suspicious in his chest area. We will return to Philly in a month for another MIBG scan and a CT Scan.
His Bone Marrow shows about 1% disease. Though this is not the news were looking for, we are thankful that the reports will read stable. In the world of Neuroblastoma "stable" is good. His Bone Marrow is so beat up his platelets still remain low.
Michael will return to school on Wednesday, I can't beleive he will be in 5th grade. Where does the time go????
Frankie will be 11th grade and Anthony in 1st.
I will report the status of blood work and the plan for his chemo later in the week.
HAPPY BACK TO SCHOOL!!!!!

Don't forget September is Childhood Cancer Awareness Month,
spread the word!!!!!

WArmly,
Sharon

Thursday, September 2, 2004 4:21 PM CDT

We arrived safely yesterday in Philly, checked into RMDH and left for the Phillies BAseball game. The Stadium here is really nice. The boys had fun. There were activities for them to do and lots to eat. Michael ate "2" Philly Cheesesteak Sandwiches.
This morning we headed over to the hospital. His blood was drawn and counts weren't so bad. I thought they would be a little lower. His platlets were 55,000 and Hemoglobin 8.3
They transfused him 2 units of red cells(now that he's bigger he gets more) They gave him his injection for MIBG tommorrow and back to RMDH we went.
Tonight there is a dinner donated and cooked by a volunteer organization. Michael is already cheking out the kitchen..seems Corn on the Cob is on the menu.
He kind of gave us a hard time today taking the CEP701. He's tired of drinking it. It breaks my heart to see him like that. Hopefully tommorrow we'll have good news to report again.
Please continue to pray for everyone battling this disease.

Monday, August 30, 2004 11:54 PM CDT

The boys are back from their trip to Ohio and Toronto to see the Yankees. They seemed to have a fun time. Lots of driving though.
Today, being that the convention started in NEw York, Michael's nurses felt that we should stay local to have CBC and transfusion. Luckily Dr. Iyengar was nice enough to see Michael even though he doesn't service Pediatric Patients.
THey drew his CBC and unfortunately his platelets were only 9,000. OUCH!!!!! WE then needed to go to the ER to get the transfusion. Upon arriving at the desk there were quite a few people in the waiting room. WE were going to wait outside until a very nice nurse by the name of Ellen came out and asked what he needed. She immediately took care of Michael and put him in a room away from any germs.
She continued to do what she had to in order to send for the platelets. She said it would be quite some time that we could go home and she would call us. Michael was hungry, and wanted Petridis hot dogs. So I took him there to get his usual.. 2 with Sauerkraut, Cheese and Onions, what a combination. At four o'clock they called to say we should return. The platelets arrived a bit after that and we were discharged at about 6:45 p.m. According to some friends at the hospital in NY today- they hit no traffic at all.
We should have taken our chance.
Anyway, Ellen the nurse called to check onMichael tonight which I thought was very sweet.
We'll be happy to be back at MSKCC next week.
For now.. Philly on Thursday.

Take CARe
Sharon

Tuesday, August 24, 2004 9:58 PM CDT

We are back home after a few wonderful days on Orlando. Our flights going and coming were good. On Wednesday we headed straight to Universal Studios. Michael and Frankie went on the "Hulk" first. We all got totally soaked on the Water Rapids. The Dr. Seuss Characters were all out and the boys took pictures with them. On Thursday we left early for a good spot at Discovery Cove. We all got geared up for the Dolphin swim. WE watched a video and got some instructions from the trainer and down to the water we went. We were introduced to "LaToya" our dolphin. We touched her, kissed her and Anthony even fed her a fish. The trainer gave us some dolphin info and finally we ended with riding her through the water. It was an experience everyone should have. The rest of the day we just floated through the lagoon, snorkeled in the coral reef and went in the Stingray pool. The boys were all brave.
We then ventured to the Bird Aviary and they fed exotic birds right from their hands. One landed on Mom's head which they thought was hysterical. We had our lunch there and ended the day getting changed and going to Seaworld.
Michael was disappointed he wasn't tall enough to ride the roller coaster there.
On Friday we took a taxi to the Childrens Oncology clinic . It took 4 hours to get blood counts back. He did need platelets. We went back to Seaworld and saw 2 great shows.
Saturday we packed up and went back to Universal in the morning and headed home on a 7pm flight.
Thanks Colleen, Rich and Sam for driving us and picking us up. That was a great help!!!!
A special thanks again to Mike Petrakian (Bayonne Fire Dept) and Ginger (Four SEasons Travel) for putting this awesome trip together.
I will download the dolphin pictures soon.
Michael and his brothers are going to Ohio and Toronto to see the Yankees play with their dad. True fans I guess!!!!
NExt week is Philly and hopefully we get some good bone marrow results.! Extra Prayers this week

Thanks
Sharon

Sunday, August 15, 2004 8:42 PM CDT

Michael is home and feeling much better after being admitted for fever. His blood cultures remain negative and his spirits are good. They did give him a blood transfusion yesterday (direct donor by the way), thank you whoever gave their arm. He also got platelets today.
He won't need to be seen in clinic tommorrow or Tuesday.
On Tuesday we will be leaving for Florida, THANKS TO THE BAYONNE FIRE DEPARTMENT AND FOUR SEASONS TRAVEL.
Thanks Mike and Ginger!!!!!!! The boys will be swimming with the Dolphins . Michael has been asking to do this.
He will be seen at the clinic in Orlando for a platelet count on Friday before we return home.
If anyone is interested in donating the hospital has been VERY low on platelets. Direct donations can be made for Michael and he has been getting them at least once a week.
If you can give please call the donor room at 212-639-7643.
WE are truly greatful for everyone who has been part of Michael's team.

Warmly
Sharon

_

Friday, August 13, 2004 7:27 PM CDT

After spending 15 hours in Urgent care Michael was finally given a bed on the pediatric floor. He was running a fever of about 103 and had chills. Because of the mediport he needed to be seen and have cultures drawn. They also did a chest Xray at 4:40 am this morning because of the cough he has. The Xray shows the beginning stages of pneumonia. The fever broke this morning and he is eating and drinking.
Feeling pretty good at this point. he will probably remain here until Sunday or Monday.
Let's hope it's just a normal childhood "bug"

Warmly
Sharon

Friday, August 6, 2004 10:06 PM CDT

"Miracles can happen, you are living proof"

This quote was on a card that Michael received during the first round of treatment. I saved it and often reflect back on it. Michael is truly a Miracle....

Michael had his MIBG scan today in Philly. We returned back to clinic and had some lunch. Dr. Maris was doing rounds so we waited a bit. He examined Michael and I told him that he was having some pain in his knee. He said I don't see why the MIBG is negative. In fact the spinal tumor is not there either. There is a small, subtle spot on his right arm which Dr. Maris isn't concerned about but will monitor it. So, 1 month of CEP701 has cleared the tumors. He didn't have bone marrow study this time but will have it on September 2nd when we return to Philly.
We are truly blessed with this wonderful news. God has special plans for Michael. I think after all of this he has passed the test. Michael will start the next course of CEP on Monday.
His bravery ,courage and determination to beat the beast is once again displayed.
Please continue to pray that Marrow will be clean and we can get him back to NED status. That seemed so far away when we started CEP.

Frankie also has some good news for the day..After completing the 5 week tutoring program at PREP he received the "Jerome Peterson Award" for showing quality leadership as a Tutor. Way to go Frankie!!!!!!!!!
Please pass this news on to all those who have been praying for Michael.
Have a GReat weekend!
With Love , Thanks and Friendship,

Sharon

Tuesday, August 3, 2004 11:10 PM CDT

Michael returned home from Camp a little homesick but he had fun. This weeks visit to clinic was quick. Labs were drawn for Philly. Platelets still seem to remain low.19 months out of transplant this really worries me. He's had alot of treatment and just can't rebound with them. He will go to Philadelphia on Thursday and Friday to have his MIBG scan. Please pray all looks good and we go home with the next cycle of CEP701.

Wednesday, July 28, 2004 8:28 PM CDT

What a way to spend the first day at camp..rain,rain,rain.
Michael decided he would like to go to Sleep away camp through MSKCC - Happiness is Camping. It is run by doctors, nurses and many volunteers. I drove him yesterday and dropped him off. Anthony wanted to stay as well, he is too young. It was very hard to leave him there. He's never stayed away by himself EVER. I spoke to the director this morning and he had a bit of a tough time at bedtime last night. They settled him down and then there were bats flying outside of the cabin. Hopefully today was a bit better. They don't like too many phone calls. I left a message tonight. Tommorrow he will be home and it will be great to see him. He is very brave to have decided to go. There were a few other patients from his hospital there.
Next week he will be in Philly for a few days.
Let's hope we get to course 2 of the CEP701.
Missing my camper,
Sharon

Thursday, July 22, 2004 10:49 PM CDT

Michael is doing a wonderful job taking his new treatment. Most of you already know he "Hates" liquid medicine. He had a clinic visit on Monday and needed a platelet transfusion.
They were only 18,000. Today he was seen by Dr. Wolden for his radiation follow up. Everything seemed to check out ok. He feels good. HE does have a little bit of skin darkening on his knee and the middle of his back. That is normal and will fade over time. Last night he went to the Dave Matthews concert with his Dad and thought it was "AWESOME"
He has two more weeks of CEP701 to take and then back to Philly for MIBG Scan. In the meantime, ifI don't update it's because we are doing fun things.
Thank you all for always thinking of Michael and keeping him in your prayers!

Warmly
Sharon

Tuesday, July 13, 2004 9:17 PM CDT

I am pleased to start off with Michael's CT Scan showing some improvement. The MIBG showed some areas improved and some unchanged. At this point any improvement or stability will do.
Sunday we headed off to Philadelphia for treatment. Michael was a good co-pilot. Monday morning was very rainy in Philly. Michael's day started at 8:30 in clinic and left at 6:15. He was a good sport about it considering he didn't even have to stay. We volunteered to have the blood drawn all day for Dr. Maris' research. His hemoglobin was very low. We decided to transfuse him today being he had to go to clinic anyway. His nurses in the day hospital were all very sweet. He will need to go back to Philadelphia on Friday for another blood draw. It needs special treatment in the processing of it. The treatment will continue for 28 days. At the end of the cycle Michael will scan in Philly with hopes to continue on the protocol. It's something he has to drink twice a day and he is not fond of that at all.
Michael's very dear friend ,Jessie from the hospital passed away on Saturday . Please keep his family in your prayers.
I thank all of you for continuing to follow Michael and for keeping him in your prayers.

Thursday, July 8, 2004 10:35 PM CDT

Michael is scheduled for his CT in the morning. On Wednesday blood was drawn and sent to Texas in hopes that a vaccine will grow for him. It's something to use down the road. On MOnday he will begin CEP701 in Philadelphia with Dr. MAris. It's in liquid form which he is not too happy about. He actually didn't want to do it until we bargained a little bit. Anyway we're hoping that this improves his disease status.
There are so many of our friends from the hospital that need extra prayers right now. If you could keep them all in mind that would be great.
Michael has a wonderful friend by the name of Ray. Ray has a painting that bleeds holy oil from the Blessed Mother and St. Anne's eyes. Many people have received miracles from praying the rosary with him. I beleive our miracle was No Disease two years ago after MIBG. Ray's Rosary has been very special to Michael. If you'd like to visit the website it is
www.rayofhopefoundation.com
They are having a silent auction in November. If anyone has something to donate let me know I will get it to them.
Last years prizes varied from baskets to tickets to Broadway Plays, Lladro, Sports Memorabelia. Have a wonderful weekend. Michael can finally swim after tommorrow. His mediport is finally healing.

Thursday, July 1, 2004 9:56 PM CDT

Michael finally had a break from clinic today, actually he has the entire long weekend off! We got some news from Dr. Kushner today that the MIBG scan shows IMPROVEMENT! I am thrilled to hear that. The Bone Marrows are still positive, but we'll deal with one thing at a time.Tommorrow we should have Urine Marker results. Michael is full of energy and having so much fun playing with his friends. He told me in the car the other day "Mom, I have a really good feeling about the radiation" His positive attitude is just wonderful.
He still has a CT scan scheduled for next week.
All of your prayers seem to be working thus far. Keep them coming.

With Great Blessings,
Sharon

Friday, June 25, 2004 9:40 PM CDT

Dr. Laquaglia does another fine job today. Michael has his mediport placed today and bone marrows checked while in the OR under anesthesia. He was very sore and needed some morphine in the recovery room as well as a bag of platelets. He was discharged about 2:45 this afternoon and wanted to go to McDonalds. He had his usual 6 piece Chicken Nuggets. When we got back home we made a stop at his favorite choclate place, Al Richards for his last box of Choclate covered strawberris for the summer. They close for a 2 month break. Who wants melted choclate?
We then picked up Anthony and headed to Blockbuster Video and finally rented the movie Miracle. Michael never sits still to watch a movie but he was so sore tonight he didn't have a choice. At around 9:30 he finally took a Tylenol with codiene.
Tommorrow hopefully he will get the best medicine of all... THE NEW YORK YANKEES vs METS
WE have tickets for the 1:05 game
His scans have been moved to Monday, Tuesday, WEdnesday of this coming week. We will have results before he heads to CHOP on July 12th.
I ask you to continue to pray that whatever he has done in the past few weeks shows some improvement and we can get back to NED status!!!!!

Happy Friday to all!!!!

Wednesday, June 23, 2004 9:01 PM CDT

Happy Summer!!! Michael couldn't have been any happier today. First of all, he did not have to go to the hospital at all today!!! He finished 15 days of radiation yesterday. Thanks Team 242 for being so patient with us. He is having a mediport put in on Friday and his Bone Marrow Checked. I'm sure he'll be a bit sore. Platelets are still the same hanging at around 25.
Second, MICHAEL WAS PROMOTED TO 5Th grade today!! He is really happy with his teacher. A special thanks to Mrs. Aceti and Mrs. DelPiano for such a wonderful year in 4th grade. Michael really enjoyed being with you both:)
Scans are coming up in the next two weeks. Please say some extra prayers that Michael is headed in the right direction. Philadephia will be right around the corner as well. I've been bad in updating pictures so shortly I will update the ROMANO 3....

Monday, June 14, 2004 9:54 PM CDT

I can't begin to tell you how proud we all are of Michael tonight. About 200 children were honored by the Dad's Club at school for their academic achievement. They all received a Medal. Michael was one of them. He loves going to school for the socialization ,, as far as the books forget it. He really tried hard and did well considering for the first part of the year he was back and forth a few times a week to clinic and then the relapse. He really didn't want to go at first but I convinced him that he earned it!
He has six more days left of radiation. We are trying to coordinate the next course of action. Dr. Maris' trial should reopen on July 5th. Michael wouldn't be able to start until at least the 12th. He complained a little last night of back pain.My heart sinks when I hear him say that.
I just rubbed it gently and it soothed him to sleep.
He received a platelet transfusion on Friday which should hold him a bit. In the meantime, he's going on his class trip to the Amusement Park on Wednesday and continues to be an outdoor kid afterschool.

Thursday, June 10, 2004 9:46 PM CDT

Michael really enjoyed his birthday. Yesterday he had fun swimming in his friend Samantha's pool. As hot as it was the water was a tiny bit chilly. He has some sort of cold going on. Yesterday they checked him and everything seemed to be ok. Today he is coughing and his nose is running. He wasn't so happy that they had to swab his nose. They usually do that to rule out RSV Virus. He is now isolated from the Pediatric Day Hospital for 5 days. Thank goodness the weekend falls inbetween. He will continue with radiation and tommorrow he will need a platelet transfusion.
Today the boys went to the Yankee game. BIG WIN for our pinstripes!!!!!( A special thanks to the Calabrese family for them).
Tommorrow is a BIG day for Anthony. He graduates from Kindergarten. For a kid who spent sooo much time at the hospital he's come a long way. His teachers love him, the kids love him and of course MOm loves him!!! He has done a super job!!!!! Look out first grade....
Have a wonderful weekend!

Tuesday, June 8, 2004 9:18 PM CDT

Ten Tiny Toes, ten fingers, ten pipers piping, Alexander Hamilton, Ten Little Indians, Ten Commandments. So many things come in tens or represent it , but the most special representation today is MICHAEL.
Michael turned 10 today. CELEBRATE!!!!!! He looks good, feels good and was soooo happy today. He had a little part in school this morning, then went to clinic and had another cake and some presents. He did radiation and we headed home. We picked Anthony up and went to his baseball game. He had a really nice hit!!!!!
Michael's choice for dinner was Chinese. He loves Broccoli with brown sauce and plain lo mein. His cake was white cake with white frosting and choclate covered strawberries on it. Frankie wrote him a lovely poem.
His new sporting endeavor seems to be LaCrosse. Mom thinks it's a bit dangerous....
We have so much to be thankful for today. The gift of life is the best gift to be celebrating. It's beauty, laughter and happiness. Michael represents all of those.
Happy Birthday Michael, I am so proud of you!!
Keep smiling my little hero:)

Friday, June 4, 2004 7:27 AM CDT

Michael started his school week off by going on a class trip to Sandy Hook Beach. The rain held off and the kid enjoyed a few hours of playing in the sand and running around. Wednesday was the start of Radiation. He was pretty good about it. He also had a baseball game Wednesday night and he hit another single. Yesterday was a really long day for him at clinic. He needed a blood transfusion and instead of 1 bag of blood they gave him once and a half. When we went down to radiation the machine was down and he had to wait there. They finally took him around 4 o'clock and it was rolling smoothly until we got to the knee. There was a problem with the door closing and he had to stay still for a few extra minutes , he leg was starting to cramp up. He had just really had it for the day. He told me "I'm never coming back here again"
Well, it's Friday and we are going back. He has a baseball game tonight which he is really looking foward to. THEY NEED THE WIN!!!!!
Let's hope radiation goes well for him today. Have a great weekend !!!!!

Saturday, May 29, 2004 8:51 PM CDT

Last week didn't wind up so bad after all for Michael. On Tuesday he really didn't feel or look well. We went to the Spring Prom at the hospital and he didn't want to wear the Tuxedo shirt. He ate and danced though. He and Anthony were Prom Kings in each of their age category. He finished the week at school as well. On Friday he had an appointment in NY for a last check of the set up for Radiation. We thought because of all the holiday traffic we would take the Ferry over.. WRONG we missed the boat because the woman selling the tickets stepped away for a few minutes. We got to the hospital on time anyway. His counts were not so bad.
Today Michael had his first in the Major League Division!!!!!! He told me " I couldn't breath when I realized I hit it" He was really excited and his team won the game. They now have a game on Wednesday.
Radiation should start on Tuesday, but because his class is going to the beach he is starting on Wednesday.
He's been feeling pretty good and is really active.
Enjoy the rest of the weekend!!!!!!

Sharon

Monday, May 24, 2004 9:25 PM CDT

Today Michael started Oral Chemo at home. Two pills a day for five days. The docs said he should have any side effects... his stomach was upset and he vomited around 9:30 this evening. His clinic visit today showed the platelet count at 31,000. I sure hope they really don't drop too low between the chemo and the radiation that will start on Friday. We had some while waiting for pharmacy to dispense the prescription ,so Michael made lunch plans with his friend Harrison. Tommorrow will be the Spring Prom at the hospital and Anthony will join Michael in going. They have a DJ, lunch and fun things. As long as Michael feels ok he will have his baseball game in the evening. GO TEAM GO!!!!
AS the treatment continues I will update on his status.
In the meantime, please continue to pray for Michael.

Monday, May 17, 2004 9:47 PM CDT

Michael had a really fun weekend. He played ball on Saturday and went to the Yankee game on Sunday. The tickets are donated to the hospital by two very special people. They go out of their way to make these children feel so special.Michael has a really special connection to one of the greatest teams around. It's funny that even the food server remembered the boys from last year. I guess because we ordered food at two games and they were rained out in the end.
Today Michael had Radiation Simulation. This is the process of marking him precisely for the actual radiation. They are going to do the spine and the knee. He had to lay still for about 2 hours on the table. The last part of the process is getting tiny tattoos on the area to be radiated. The use a needle filled with ink. It hurt him a bit so we put some cream on to numb the area.
His platelet count was 35,000 today.
We learned today that Michael does not have any Stem Cells in reserve which knocks him out of doing MIBG therapy in Philadelphia. I think we are bummed about it because he responded so well last time.
Dr. Maris has some other options. Dr. Kushner mentioned some low dose chemos today. Down the road Dr. Russell has a new vaccine as well. We are still fitting the puzzle together. Michael will continue going to school. This week happends to be a fun one with some trips to the park and stuff. Our journey has once again started. Please continue to follow as treatment continues.

Warmly
Sharon

Saturday, May 15, 2004 7:36 AM CDT

Last week was a long exhausting week for all. Michael missed school most of the week and was at clinic in NY for MIBG scan on Wednesday. Aside from showing the tumor in his chest, he also has a spot on his left femur above his knee.
We met with Dr.Woldon in Radiology and he is going on Monday to be set up for radiation. I don't know when it will start. On Friday we consulted with Dr. John Maris in Philadelphia. He is going to review the scans as well and give us his opinion on Monday. He offered us a few treatment plans. We assumed he would offer us MIBG treatment again and he did. That worked so well for Michael.
The question is "Does he have enough stem cells for a rescue?" There are a few things out there if his platelets were a bit higher. We still remain hopeful.
We touched base very briefly with our lovely friends Angela and Christi. Christi was treated in NY and is now at CHOP. They are from Ohio and are a very sweet family. Anthony spent alot of time playing with Shayla, Christi's younger sister while in NY. Christi needs prayers as well. Thanks for finding us Angela!!!!!! After a long day Michael still found the energy to go to a birthday party last night for his friend Anthony. The kids had a blast. He won two rounds of Musical chairs. GO MICHAEL!!!!!!!!
Today he has a baseball game at 1pm. On Thursday all of the boys stayed home from school to go to the Yankees Game. Thanks to Michael's 2nd grade teacher and her husband for getting the tickets. It was a perfect day and the Yankees won!!!!! Michael's attitude and spirit remains strong. Keep praying for Michael and the rest of us that we make the right decision on what to start him on!
Have a great weekend

Sharon

Tuesday, May 11, 2004 10:57 PM CDT

From the looks of my last journal entry ou would think that everything was going well for Michael. He just received his 3rd round of re-immunizations and was even bumped from his MIBG scan for an emergency case because the docs figured Michael is doing so well.
It is with a very broken heart that I write tonight that Michael has relapsed, after being NED for almost 16 months again. He has a tumor in his Chest, to the back near the Spinal Canal and Marrow disease. This indeed is very frightening as it was in the past. We have met with MSKCC and will consult with Dr. Maris in Philadelphia on Friday. The low platelets may cause a problem with some potential treatment options. We WILL continue this fight as so many others are at this time. Michael's spirit, courage and determination are very strong. He's played 2 baseball games this weekend , has been going to school and is still smiling though all the news. I never knew that my child would be such an inspiration and a hero.
His two brothers are heroes as well. Frankie and Anthony have become "Super Sibs". Anthony was so proud of his ribbon and tattoo. Super Sibs is an organization that send notes, cards etc. to the siblings of patients. As much as we try to include them , sometimes the time away from home and stuff is very hard for them.
I will post again as soon as we have a plan. I am confident no matter what we choose or where we go Michael will be watched over.
Thank you all for being a part of Michael's fight!!!!!!

Monday, April 26, 2004 9:11 PM CDT

Hello Everyone! Things are pretty quiet here. Michael did not have a clinic appointment this week. Last weeks appointment was basically a quick in and out. Platelets still seem to be lingering at 25,000.
Michael has been busy playing baseball. Report cards were distributed and he was proud to bring home Second Honor Roll. Congrats Michael!!!!!!!
Next week is his 3 month work up. Bone Marrows will be checked, CT of Head, Chest Abdomen and Pelvis and of course an MIBG SCan. He will also have his blood work drawn to be sent to Texas for follow-up and he will be given his 3 immunizations due for this month. The immunizations will be given while he is under anesthesia for Bone Marrows.
Continue the prayers for Michael and all of our friends in treatment at the hospital.

Thursday, April 15, 2004 11:25 PM CDT

Thank God for some sunshine today. After a few days of rain the boys didn't think they would get in any baseball.
If you are looking for #2 at the Cal Ripken field this season you will not find Derek Jeter, you will find his friend...MICHAEL. Michael has just moved up to the Major League Division. He hit the ball pretty hard tonight but it was an out. That's ok Michael, next time it will be a home run. He is playing outfield. I think he'd like to be at second or shortstop.
On the Medical side, Michael has a clinic appointment next week . We are still looking at low platelets. They just don't want to budge. There are so many friends struggling at the hospital right now . I ask you to please keep Michael's friends in your prayers.
Michael returns to NY the first week of May for scans. They have eliminated his bone scan. I guess it's another step in the normal direction.
Happy Friday!!!

Tonight Mom has a dance with Frankie at school. Last year it was really nice.

Michael has a baseball game.

Anthony has his first Spring soccer game. Fall season he was on the injured list with his ankle. When he woke up this morning he said " I slept late today so I had alot of rest for my soccer game on Saturday" Out of the mouths of babes!!!!

Thursday, April 1, 2004 9:34 PM CST

For those of you following the hockey game status, Michael's team cam in second place the other night. He received a Trophy, as well as Anthony for being the Mascot.
Michael also finished his bowling season up this week and earned a trophy for second place. He bowled a 106 this week.
Getting back to the medical aspect, he was transfused platelets on Monday for his Tuesday dental appointment. He braved two fillings with no novacaine. His scans are coming up the beginning of May. Please continue to pray that Michael remains NED!!!!

Saturday, March 27, 2004 9:06 AM CST

HOPE is the thing
with feathers that perches in the soul
and sings the tune without words
and never stops- AT ALL
EMILY DICKINSON

Yesterday was two years since Michael's relapse. I can remember that day so vividly, not knowing what our chances were going to be. Again Michael took the lead and we followed to keep going and fighting. Now, two years later he gives many HOPE. He is truly an inspiration to many. He came out of school yesterday with a big smile on his face because he enjoyed the day. We have been so fortunate to have met so many new "friends" in the past two years and we hold them all dearly in our hearts. Michael, along with all the children fighting and those who lost the fight can carry the title HERO in my book anyday. He still continues to go to clinic to have his platelets checked. After a year post transplant he is struggling to get them up. Michael continues to play sports, strives to do his best in school and ENJOYS LIFE! Thank you all for supporting him. Please continue to pray for clean scans and peace for all these children struggling!

Wednesday, March 24, 2004 9:52 PM CST

HAPPINESS IS......... Watching Michael score the winning goal for his hockey team. For those of you following the hockey schedule ,Michael played last night the game ended in a 1-1 tie, 3 minute overtime and then a shootout to break the tie. Michael scored the only goal in the shootout to advance his team to next weeks game. He is soooooo excited. Two years ago this week he relapsed and when I look back to that time and see where he stands today I am thankful for so many things. Michael loves and lives for sports. He does he best to keep up with the other kids.
So tune in next week for Game 2.

Monday, March 22, 2004 10:28 PM CST

Part Two of the Root Canal took place last week and Michael was a super patient again, sitting in the chair for one hour. When we got home he seemed to be fine playing and all of a sudden he started screaming in pain. I guess the trauma to the tooth and the novacaine wearing off. He said "It's worse than antibodies" I really couldn't beleive that ut then I thought about it and realized maybe he forgot what the Antibody Treatment Pain really felt like.
He took some Tylenol with Coedine and in about 15 minutes decided to go play. Later that night he insisted on playing his hockey game and he scored two goals. He's one determined kid!!!
Today we went to the new clinic at MSKCC and it is really nice. Michael really liked it. His counts aren't bad at all. Platelets are still hanging in the 20's . He will need to go back next week for Platelets because of his dental appointment on Tuesday.
Tommorrow he is really psyched about his playoff game for hockey. This is the first year he has played and really wants to win the Championship.
Wish him luck!!!!!!!!!!!!!!!!

Thursday, March 11, 2004 10:17 PM CST

Much to our suprise Michaels platelets are on the rise. I took Michael into clinic to have a platelet transfusion in preparation for the Root Canal he had today and they were at 46,000. He got the transfusion anyway as precaution.
Michael was very brave today at the Endodontist office.
He was also very lucky to have our own dentist, Dr. Perle meet us there and actually held Michael's hand. Thank you soooooo much Dr. Perle. Don't forget Michael gets two coins at your office on Saturday for the treasure chest!!!!!!!!!
Dr. Bair said "He will be a little sore for a few hours" he decided he would skip the afternoon at school. I promised Michael as suprise after the dentist, so he chose to go to Modells to buy an Alex Rodriguez, Yankee Jersey. No he's not trading Derek Jeter as his favorite, just welcoming A ROD to NY.
His hockey team won their game the other night and may be on their way to the Championship. Baseball is starting, not sure where he will be playing.
No matter what the position, he is already a CHAMP!!!!!!!!
The Bayonne Police Department has still been so genersous in donating platelets in Michael's name ..Thanks Everyone!!!!
Anthony lost his first tooth tonight. Frankie will be on his Spring break next week.
Have a wonderful weekend!!!!!!

Monday, March 1, 2004 8:36 PM CST

Michael is doing really well. He resumed Gym Classes, is practicing for the BIG 4th GRade State Test and baseball. All of his scans came back negative, urine markers are normal. We are blessed with another great day. He is STILL dealing with the low platelet isssue but it is expected to return to normal eventually. Anthony had Chicken Pox last week, I sort of expected it knowing he was never vacinated and is always Michaels right hand.
The end of this month is two years since Michael's relapse and he has come such a long way. I am so grateful for all of you who check this website and pray for Michael on a daily basis. Please remember to pray for our NB friends who are struggling right now with treatment.
I've been really bad on updating pictures. I'll try this week to change them.
Thanks for your continued love and support.

Monday, February 16, 2004 7:05 PM CST

Michael is home and feeling much better. The shingles are drying up .Thank God he didn't complain too much with them. He was checked today at clinic and counts remain stable and he doesn't need to go back for two weeks. He's hoping for alot of snow this week so he can sleigh ride at the park. His class and teacher sent him a bag full of Valentine Cards and an X Box game that he was thrilled with. Thank you Mrs. Aceti!!!!!!!!
Anthony didn't feel good all weekend with a stomach bug, seems to be going around. Keep warm!!!!!

Wednesday, February 11, 2004 8:57 PM CST

After trying to get out of the inpatient stay on Friday night, Michael IS inpatient since Monday. The shingles spread a bit more and IV needed to be given. As of today there are no new lesions and they seems to be drying up. He is climbing the walls being in an isolation room. We've been keeping busy with games, playstation and movies. He just loves being the banker in the game of LIFE. Hopefully we will have some news of being discharged by Friday. Happy Valentines Day to ALL!

Saturday, February 7, 2004 7:32 PM CST

Eat, Drink and be Happy! That's what Michael's motto has been lately. He's eaten so much and seems to be the king of gatorade. He's thrilled that he has gained about three pounds in the past two weeks. His cheeks are like a chipmunks. He completed his scans this week and the bone scan is back and is normal. We are waiting for the CT Scan and MIBG. In the meantime, last night Michael and I were in Urgent care at midnight with a case of the shingles. He noticed a few small patches on his chest and underarm as he was changing into his pajamas. Thanks to Dr. Choudhry, we were in and out within an hour. She spoke to me on the phone before coming over and promised to meet us which she did. Michael takes oral medication well so she had no problem sending us home. If it spreads he will need to go inpatient to be on IV Acyclovir. There is also a concern with all the children that Michael came in contact with at the hospital this week, some of them are immunosuppressed.
He's not in pain and is not complaining. He will need to be out of school this week.
This week Frankie celebrated his 16th birthday and the boys were happy to suprise him with gifts, balloons and cake.
Congrats Frankie!!!!!!!!
We are very grateful to have wonderful results so far. It never hurts to keep praying for Michael and his friends in the pediatric department.
I'll report back early next week with other results and keep you all posted on the Shingles>
Thanks
Love
Sharon

Friday, January 30, 2004 2:27 PM CST

I hope all of you have been staying warm. The kids of course just love it like this. Wednesday was a NO SCHOOL day! Michael couldn't go sledding at the park because of the stitches . We built a snowman in the yard. Three more weeks and he can resume to normal activities including Phys Ed at school. Today he had a clinic appointment and we saw the dermatologist for a mole on his back which according to the Doctor is nothing to worry about. We had planned for a long day but his counts were ok. Next week he will have a Bone Scan, CT Scan and MIBG Scan. Please continue to pray that he remain disease free. This weekend is SUPERBOWL and the boys are excited. Michael wants the Patriots and Frankie and Anthony are routing for Carolina! Sibling rivalry....not in our house. Have a SUPER weekend!

Wednesday, January 21, 2004 6:55 PM CST

I didn't realize that I hadn't posted in almost two weeks. Bone Marrows are clean!!!!! YEAH Michael. WE are truly greatful to be blessed with such wonderful news.
Michael started his visits to the dentist. He's got a little bit of work to get done. The chemo has actually taken the enamel off of some his teeth. He was scheduled to have a tooth extracted yesterday. It apparently was a baby tooth that fractured and has decay. The dentist at the hospital only uses Novacaine, no sweet air. Michael was a bit tense about the whole thing. We tried and he was just hysterical. I told them that we would go to a Pediatric Specialist. When we got home we received a phone call that after further evaluation of the Xray the tooth is a permanent one. So now he will probably need a root canal.
YIKES!!! After all he's gone through this should be a piece of cake, beleive me it's not for Michael.
His platelets finally hit 30,000. He's getting a little bored not being able to play sports. On MOnday we went to dinner with a special friend of his and her mom and sister to a great place in NYC. I never saw two kids eat sooooo much. Of course the favorite for Michael was Angel Hair with Shrimp and garlic and oil. Frankie enjoyed the Chicken Parm. Michael is weighing in at about 74 pounds.
I ask you all to say some special prayers for some of our friends at the hospital. One who is starting MIBG therapy tommorrow at CHOP, one who finished MIBG and did not get the results they were looking and one who is waiting for the next course of action for treatment. Please pray for these families.

Sunday, January 11, 2004 6:50 PM CST

Hello Friends! The mediport removal went well. Michael is out of commission for 6 weeks as far as playing sports and lifting. He was a little disappointed. The good news is he'll be able to play baseball in the spring without a worry in the world. He went to school on Friday like a trooper. He really never complains. As soon as we get results of the Bone Marrow Aspiriates I'll post. Thanks for being so supportive of Michael!!!!

Tuesday, January 6, 2004 9:03 PM CST

HE SHOOTS, HE SCORES!!!!!!! Tonight was Michael's first indoor floor hockey game. He scored a goal to help his team win 9-4. Look out Mark Messier here comes Michael!!!!!
Michael is feeling great and looks well too. Thursday the Mediport will be removed and Bone Marrow Asprirates done. So please pray all is well. We'll post in few days with results

Wednesday, December 31, 2003 9:05 AM CST

Happy Anniversary Michael!!! Today is 1 year post transplant for Michael. We are all so very excited to have come this far and so greatful. Last year a this time we were on the 5th floor of MSKCC for 40 days. This year we are still dealing with platelets at 27,000 yesterday but Michael is as strong and active as ever. On Monday we went Ice Skating, something he hasn't done in about 2 years and he had a blast. He's been riding his bike and playing bsketball. Christmas was great! The boys got everything from Santa and more... Michael got a Bowling Bowl- not to mention it has Derek Jeter's face on it! He bowled the other day without bumpers and scored a 100! Way to go Michael. We had our weekly clinic visit yesterday and Michael started to get re-immunized. He lost all of his titers from the high dose chemo. I was very proud of him getting the shots in the arm. He is scheduled to have his mediport taken out next week. That is a MAJOR step for Michael. It has been used to administer his medications, blood transfusions etc for over a year. He can return to gym class when that is out and his is healed a bit. So it seems like we are going in the right direction.
On Christmas Day, Fr. Tom's homily was about looking back into the year and finding some sort of MIRACLE that has happend to us. Well we don't have to look that hard.
Michael you are so corageous and brave. You inspire so many people. CONGRATULATIONS ON 1 YEAR POST!!!!!
May all of you have a HAPPY, HEALTHY NEW YEAR.......

Thursday, December 18, 2003 10:24 PM CST

It's been quite some time since posting. Michael has been enjoying himself so much. He went to see the Radio City Christmas Show with his class last week. He also was invited to the Sony Party for the kids that MSKCC gives. We went after clinic and had some time to kill inbetween so Michael and I walked around Madison and 5th Aves. He was so amazed at the stores and of course the prices. We stopped at St. Patrick's Cathedral- said some extra prayers. He'sPlaying basketball once a week. He will be starting floor hockey after the holiday. He enjoys every minute of it. This week he's got a bit of a cough. We finally went to see DR BOKHARI our regular pediatrican , Michael hasn't been there in a long time. His throat was scratchy , but tested negative for Strep. On Tuesday we decided to do the blood counts at home at a lab. Michael was very brave and let them use his arm to draw it instead of from the Port in his chest. After the visit he decided the poke didn't hurt and would get the port out after the New Year! The lab was supposed to send results by late afternoon to the doctor and did not. Tuesday night he had chilld, I thought he was coming down with the flu. On Wednesday the doctor called in the late afternoon to say that Michael needed blood abd platelets. i guess that's why he'd been so cold. We went into clinic early this morning and he was tanked up. He looked so much better when we left. There was a suprise visit from Snow White and Dopey, all the way from Disney.
This is such a busy time of year, shopping, baking, gifts ,parties etc. Please remember to keep in your prayers those who are struggling with this disease. There are a few children from the hospital who really need extra prayers in the next few weeks. Happy Holidays!!!!

Wednesday, December 3, 2003 9:23 PM CST

Michael received his first marking period report card and he did pretty well. Thanks Mrs Aceti for helping him re-adjust and to Ms. Marion for giving him the push at the hospital. His best subject was MATH. He's been a real trooper. He was in clinic yesterday and his Platelets held for a record time of 11 days. He doesn't have to be seen again until next week. As rough as he is I just say a prayer he doesn't get hurt. As Thanksgiving has passed and Christmas approaches we are very fortunate to be celebrating it at home this year. We'll be putting the tree up this week. Last year it was up until February when Michael came home from transplant. The boys are looking foward to some snow soon. Many of our friends from the hospital are going through some rough treatments at this time please remember them in your prayers!

Sunday, November 16, 2003 9:45 PM CST

All results are in and Bone Marrow Aspirates are NEGATIVE!
Thank God! We have alot to be thankful for. Michael has fought this battle and has overcome it for the second time.
His basketball and soccer teams are out of the playoffs. Michael played a wonderful season. This was his last year to play for St. Mary's Pee Wees. Thank you Coaches Chris and Peter for four wonderful years!!!!!!!!!!!
Tommorrow Michael is going to a Bird of Prey exhibit with his class. He will be in clinic on Tuesday for a bloodcount.
Continue to pray for Michael that he remains disease free and all his friends trying to get to that place.

Sunday, November 9, 2003 10:32 PM CST

The journal entries are a little behind this week. But anyway we have out of 4 testing results back and they are NEGATIVE. Tommorrow the Bone Marrow Aspirates should be back and God willing they are negative as well. Michael started the beginning of the week with 2 scans on Monday and some blood. His hemoglobin was 7.6 YIKES!!! You'd never know from the soccer game he played the day before. We decided not to stay at Ronald McDonald House, Michael wanted to be home and play with his friends. Monday night we completed a bread recipie from Padre Pio...for 10 days we took care of the dough and then kept a portion and passed it on to three more people. On the 10th day we should have received good wishes. WE did- Good Scans!!!!!!!!
On Tuesday , Michael had Bone Marrow Aspirates and was finished earlier than we expected. His platelets were kind of low so he was transfused before we left. Wednesday he has his MIBG scan early in the morning and was able to get back to school for a few hours. Thanks MCS for being so adaptable to Michael's schedule....After school Michael came home and decided to join the bowling team. GO MICHAEL!!!!!!!
They have a nice break from school until Tuesday. His soccer team played their last game today and lost, but they played really hard. Tonight his basketball team took a tough loss as well. It knocked them out of the Championship.
Michael was really mad. I asked him "where was he last year at this time"? he replied "waiting for transplant" No matter who wins , the important thing is that he played with his team. He gave a big grin.
Thanks to everyone who has been praying and thinking of Michael.
We have alot to be thankful for as Thanksgiving approaches.
Please continue to pray for Michael and all his friends in treatment. These kids are "Everyday Heroes"

Sunday, November 2, 2003 1:40 PM CST

It's been some time since posting. Michael has had some fun times in the past few weeks. Thanks to his friend Lynn at TCF he along with his brothers were able to go to Game 2 of the World Series, the game they won 6-1. Also during that week Michael went to the Knicks game with his little friend from MSKCC and her mom. They got meet and take pictures with Walt Frazier. Michael made his weekly visit to MSKCC for platelets. He's been having soooo much playing with his friends, going to school and playing soccer and basketball. His basketball team is going to the playoffs next weekend.
Tonight we head over to RMDH for an early clinic arrival tommorrow. Michael will start 3 days of testing. Please pray that all results are what we want to see. He has come so far in the past 18 months. WE ARE FOREVER THANKFUL for this MIRACLE!!!!!

Thursday, October 16, 2003 11:29 PM CDT

Well the only fever Michael is running these days is YANKEE FEVER! He predicted Giambi's 2nd homerun to Frankie and forced himself to stay up until the 9th inning. This is real BIG for him to see his favorite team going to the WORLD SERIES. This victory doesn't come as close to Michael's victory in the past few months. He's fought long and hard to get to where he is today. The Yankees most certainly have been a big part of his life during treatment. He was in clinic today getting Platelets of course. He did some school work with his hospital teacher and another patient who e gets along with really well. They are a TEAM. The weekend will be suspenseful as the games go on. Please continue to pray for all of the NB children
Thanks to all who contributed to LUNCH FOR LIFE and for those who passed it on to a friend. We can only keep fighting!!!!

GO YANKEES!!!!!!!!!!!!

Monday, October 6, 2003 10:40 PM CDT

Clinic visit on Friday was quite long. Michael needed blood and platelets. We haven't had too many direct donor blood products, so if you can please stop at the MSKCC blood bank or if you know someone in city that can easily get there there is a real need. Michael gets platelets at least once a week and blood about every 2-3 weeks. He's been going to school as much as possible but not enjoying the homework. "What kid does?"
He played basketball and soccer this weekend and gave it his all in both games. YEAH Michael Today they were off from school. Of course we spent a day in the doctor's office with Anthony, but Thank God his ankle seems to be fine. He has a bad bruise on the bone. Of course I was thinking the worst. The boys went bowling today and had fun of course. Tommorrow Michael has a Science test and is not that thrilled about it. Last week he got a 100.
This coming Sunday our town has a Columbus Day Parade and the Principal of MCS asked Michael to be Columbus for Midtown School. She has a costume for him. He agreed to ride in the parade. The cutest thing washe asked " Do I need to throw out candy to everyone watching the parade?"
I hope the weather is nice.
We'll be back to NY on Wednesday for blood counts . Hopefully it won't be an 8 hour day. He's real good about it. We really miss having Anthony with us.
Enjoy the week!!!!!

Wednesday, October 1, 2003 8:52 PM CDT

We're kind of behind in the journal this week. Michael started last Monday out by going to clinic and needing platelets of course. We really hurried out of there to meet our friend Lynn, Director of Tommorrows Childrens Fund at the Annual AT &T Cox Golf Classic. Michael, along with another cancer survivor from our town Chris- who plays for the Kansas City A Team chatted with Bill Madden from the Daily NEws about their baseball lives. It was such an inspiring event. They raised about 650,000 for TCF. Mark Messier and Phil Simms were there, Don Imus, Mike Lupica.
Tuesday, Wednesday andThursday were school days for Michael and he is trying so hard to do well. Friday we were back in clinic preparing for our Texas trip on Sunday/Monday. Saturday morning Michael played his basketball game, which they won!!! GOOOOO Knicks. Then turned in the uniform for a Tux to wear to Uncle Brian and Aunt Lisa's Wedding. The boys had a great time. Everyone thinks Anthony should be on the Soprano's . Frankie was so grown up looking. Our flight out on Sunday was good. We were starving when we got to Houston and at 9:30 such a big city is pretty much shut down. We settled for Mexican. Michael was really tired. Monday morning we headed over to the hospital . Michael was greeted by Joann the Nurse in GCRC. His counts were good to go and he got the last Vaccine. Dr. Russell and Kimberly , the NP have both been so helpful in our trips back and forth. There may be another trial opening in a few months that Michael may be eligible for as well. Most important we need to pray for clean scans at the end of the month.
We have been very, very fortunate and blessed this past year with successful treatments. Michael and the rest of the children living with this disease are truly an inspiration to all. Please continue to pray for each and everyone of them as they battle this monster.

Sunday, September 21, 2003 8:21 PM CDT

Michael had a nice break from clinic this past week. He had a clinic appointment tommorrow and will probably need platelets. He had a really busy weekend with Anthony's birthday party on Saturday at the bowling alley, baseball tryout- LOOK OUT MAJORS !!!!!!! ,soccer today and our friend Abby's birthday party today as well. Homework tonight was a little difficult. He's trying to get into some sort of routine. But it's been difficult after not being in school for the past year.
Tommorrow ,Michael will represent Tommorrow's CHildrens Fund at the AT & T Annual Cox Classic Golf Outing. They have raised significant funds for TCF and CJ Foundation for SIDS.
Even though we are not treated there anymore, they have remained forever in our hearts. Lynn, Kelly, Nikki, Fran, Kathy, Susan are very special ladies. Please keep Michael and ALL of the children at the hospital in your prayers.

Wednesday, September 17, 2003 10:08 PM CDT

Michael has completed his fourth vaccine in Texas and so far he has had no problems with the injection. The site does swell and get red but that is what Dr. Russell is expecting to see. He actually likes going back and forth to Texas. We went to a resturant called Old San Francisco which specialized in steak, would you beleive they could not accomadate Michael's first two choices. After his sad face, the waiter came back and said they would make an exception. He enjoyed it. He is starting to gain some weight back which is making him happy. Sunday we went to the Astros game and the Downtown Aquarium. We had a slight delay on Monday night but thank goodness we weren't stuck for hours. After all that in one weekend Michael did go to school on Tuesday morning. Tommorrow Anthony will be celebrating his 5th birthday. Time flies....I remember pushing him into clinic now he practically can walk it with his eyes closed!
This month is also Childhood Cancer Awareness month. There is a conference in Washington that many of the Neuroblastoma parents attend. I will get there someday!!!
But please if you can pass the word on about the importance of funding for Pediatric Cancer Research. State Officials are the best ones to write to. It may help save a life.
Thank you all for supporting Michael in this journey. Please continue to pray that he remains NED. It is very scary coming to the end of treatment for the second time.
But the support we have from family and friends means so much and I thank you all
Love
Sharon

Wednesday, September 17, 2003 10:08 PM CDT

Michael has completed his fourth vaccine in Texas and so far he has had no problems with the injection. The site does swell and get red but that is what Dr. Russell is expecting to see. He actually likes going back and forth to Texas. We went to a resturant called Old San Francisco which specialized in steak, would you beleive they could not accomadate Michael's first two choices. After his sad face, the waiter came back and said they would make an exception. He enjoyed it. He is starting to gain some weight back which is making him happy. Sunday we went to the Astros game and the Downtown Aquarium. We had a slight delay on Monday night but thank goodness we weren't stuck for hours. After all that in one weekend Michael did go to school on Tuesday morning. Tommorrow Anthony will be celebrating his 5th birthday. Time flies....I remember pushing him into clinic now he practically can walk it with his eyes closed!
This month is also Childhood Cancer Awareness month. There is a conference in Washington that many of the Neuroblastoma parents attend. I will get there someday!!!
But please if you can pass the word on about the importance of funding for Pediatric Cancer Research. State Officials are the best ones to write to. It may help save a life.
Thank you all for supporting Michael in this journey. Please continue to pray that he remains NED. It is very scary coming to the end of treatment for the second time.
But the support we have from family and friends means so much and I thank you all
Love
Sharon

Thursday, September 11, 2003 9:54 PM CDT

Michael has been keeping very busy. We let him play basketball on Saturday and he was so happy. Later on in the day the Knights of Columbus and the Mason Knights played a Softball game in Michael's honor. THey combined teams to play a second game against the Bayonne Fire Department. Thank you to all who participated. Michael really enjoyed himself. After the game they had a little reception at the Knights Hall, which also has a bowling alley. The kids all bowled a few games and Michael got his finger stuck in between two balls . The swelling was really bad, the color....Purple. He was in tears. He was able to move it so I didn't think it needed an XRay. Michael had a clinic visit on Monday for platelets. Thank God he is doing well. This week there wasn't alot of good news going around the clinic. Please keep in your prayers the children who have recently relapsed, those still fighting to get to NED status and those who have become ANGELS. We are off to Texas this weekend for Vaccine #4.

Thursday, September 4, 2003 5:01 PM CDT

School is going well for everyone. Michael was told that he can't play basketball and soccer until his platelets go up a bit. This is just crushing him because he loves sports. The other night at his Baseball Team's Pizza party his coach presented him with the award for "Courage and Determination" This child shows the best sportmanship ever. His heart is always in the game!
We go back to clinic on Monday for blood draw and a possible platelet transfusion. Let's pray these platelets go up!!!

Wednesday, September 3, 2003 1:41 PM CDT

Most kids are dreading going back to school. Not Michael.
He was so excited today and couldn't wait to get to his line outside of school. He's moved up to the bigger courtyard this year. Anthony lines up in the back of the building. Frankie also had orientation today.
Frankie wrote the most thoughtful notes to both of his brothers. That's
what big brothers are for!
Michael woke up and ate his cereal and did his morning routine. When I went to get Anthony dressed I couldn't find his clothes. I checked back inside and Michael was lying down on the bed dressed in Anthony's clothes. It was the funniest. The pants were a little short though.
Anyway they all had a wonderful first day. Frankie was home early enough to come with me to pick up the boys. Anthony had lots of fun and with no tears. I am so proud of all of them. Michael will be in school as much as he possibly can. When I look back at last year and all that Michael has gone through I am truly greatful for the miracles that have happened to him.
All of the teachers were so happy to see him. He has a few of his friends in his class and a teacher who always wears a smile. Here's to a wonderful school year to all!!!!!!!

Saturday, August 30, 2003 7:45 PM CDT

We arreived home safely thank God! The boys were excellent on the plane and helping mom in the airport. Michael was very brave with his vaccine. He has two more to go in the next month. Dr. Russell was very excited to see that the Biospy showed the cells she is actually looking for. Her face lit up when she was telling us. Hopefully that is a good sign. Michael took the sign of us being in Room 608 as a good one too, that is his Birthday! Thank goodness the nurses had alot of patience in Texas. I tried to clean his dressing from the biopsy and wasn't so successful because the blood had really dried. Mom wet it with some saline and it looked like one huge scab. Anyway Darilyn and Annamaria took their sweet time to pull it off very carefully and not loosening the stitches. Thank you ladies. That's all we would have needed was an infection.
We will be in clinic on Tuesday and hopefully see all of our very special friends.

Friday, August 29, 2003 3:30 PM CDT

We're back in Texas again. Myself, Michael and Anthony flew in yesterday. the flight was long but we got here safely. Even with mom driving! Our clinic visit was pleasant as usual. we did get the usual bag of platelets with the vaccine. Tonight we are going to the Astros Baseball game. By chance there were some tickets available. The boys are excited. On Wednesday night we went to the Yankees game that was fun too!
School begins next Wednesday the boys will start off all together. It's going to be hard we're all used to being together so much for clinic and hospital visits. I think Anthony will be fine an d Michael is really excited. Please pray that we continue in t he right direction from here and hope that this is the end to treatment!

Thursday, August 21, 2003 9:14 AM CDT

Vaccine 2 was given and Michael was les anxious this time. Of course he needed platelets too! Our flight landed in Newark at 1:15 a.m We rolled out of bed and into NY for fingerstick. He didn't need blood as we thought he would. Michael has been swimming with his friend Anthony. They also have a garden that the kids had tons of fun picking some vegetables in the backyard. Today he is getting a blood transfusion.His arm at the site of the vaccine injection is very swollen today. That is normal but sore on Michael's part.
Hopefully he'll have a good weekend after being fueled up. Anthony is counting the days for school. Frankie went to school yesterday to buy his books. He is excited with his schedule too!

Sunday, August 17, 2003 6:24 PM CDT

Our flight our of Newark was a little delayed but not too bad. We changed in Memphis. The weather here today is about 107. We drove to Outback Steakhouse for lunch. Michael's request!!!!!
Tonight we are going to Kemah, The Boardwalk in Texas. I bet it won't beat the Jersey Shore!!!!!
Tommorrow we'll head over to the hospital in the morning and be out on a 7pm flight!
This is the second stay here, please pray the treatment continues to go well.

Friday, August 15, 2003 2:32 PM CDT

Michael's clinic visit at the beginning of the week bought him a platelet transfusion. Frankie and Anthony went for their school physicals on Tuesday. Anthony need 4 shots but only got 3 because the MMR is a live vaccine and Michael cannot be exposed to that. So Anthony was very thankful. It was so nice to see Dr. Bokhari. Michael went to the Staten Island Yankees game with his Cal Ripken Baseball Team. Thursday they all ventured off with dad to the Yankees/Orioles game in Maryland. Good thing the lights were on there. We had no power at home until early evening. Michael had an appointment at the hospital today which we really needed to keep because of flying on Sunday. The doctors, nurses and staff were working with very few lights and no air conditioner. Some stayed overnight because they couldn't travel home. Treatments were delayed. Thank God we had a safe and quick trip to and from the clinic. We fly out again on Sunday night to Texas. Please pray everything goes well as Michael receives Vaccine #2
Thanks!!!!!

Saturday, August 9, 2003 9:30 AM CDT

Texas Children's is an amazing place. Very child oriented and immaculate. WE arrived in clinic at around 8 a.m and the nurse Joann was expecting us. She immediately started the orders for blood work and stuff. We met with Kimberly the REsearch nurse and the ball got rolling. We were on a real time budget to catch our flight out at 4. The vaccine was administered around 12:15 and Michael did get a little upset looking at the needle. After that he was fine. His platelets were only 15,000 so that was the hold up. They were critical for donations in their bank and had to send outisde for them. They didn't hang them until around 2:25. They finished at 3 and we zoomed to the airport. We flew home with United Technologies into Connecticut. Again, the pilots and businessmen were very sweet. Tuesday we went into clinic and platelets were good. He won't return until Monday to have a Punch Biopsy of the vaccine site. Dr. LaQuaglia will be doing that for him. Wednesday we took a ride to the shore to see Denise and Mike's house. Michael had some Target girft cards so we made a stop there too for a video game. We headed to the boardwalk and the boys went on the rides and Radio Disney was on the beach so we stayed there for a bit. Emily and Abby happened to be there so they had fun digging in the sand.
Thursday Michael went to the Yankee game with Samantha andher mom and dad. He had a great time!!!!!
To end the week I took the boys to the NBA Rookie Draft photo shoot. They were really excited to be playing ball,taking pictures and getting autographs of the newest NBA members. Thanks to Scott from California that was able to happen. Texas will happen again next weekend. So pray all goes well

Sunday, August 3, 2003 8:02 PM CDT

HI Y'ALL
WELL WE ARRIVED SAFELY AFTER BEING PICKED UP BY AMERICAN LIMO CAR SERVICE IN BAYONNE. WE BOARDED THE PLANE AROUND 4;30. WHAT AN EXPERIENCE. WE ACCOMPANIED THE PRESIDENT OF PIZZA HUT AND 2 OF HIS COWORKERS. WE WERE SERVED BY A WONDERFUL HOSTESS NAMED MARGA. THE PILOTS DALE AND MIKE WE GREAT. THEY LET MICHAEL SIT IN THE FRONT AND WATCH THEM DRIVE AND ALSO WATCH LAND. DURING THE FLIGHT WE SAW A RAINBOW IT WAS THE MOST BEAUTIFUL THING AND WE TOOK THAT AS A VERY GOOD SIGN THAT TREATMENT WOULD GO WELL. DALLAS IS SOMETHING ELSE, WE HAD SOME REALLY GOOD STEAK AND OF COURSE THE FIRST THING MICHAEL BOUGHT WAS A COWBOY HAT.
THIS MORNING WE HEADED TO HOUSTON. IT TOOK US ABOUT 3 HOURS +. WE SAW LOTS OF HORSES AND COWS. THE WEATHER IS REALLLY HOT AND HUMID. WE WENT TO THE MALL AND BOUGHT SOME GOODIES FOR FRANKIE AND ANTHONY. MICHAEL JUST LOVES THE BOOT TOWN STORE. TODAY WE PURCHASED BLACK COWBOY BOOTS. MEXICAN FOOD FOR DINNER WAS REALLY TASTY. TOMMOROW WE HEAD TO THE HOSPITAL PLEASE PRAY ALL GOES WELL.
THANKS FOR BEING ON MICHAEL'S TEAM!!!!!

Thursday, July 31, 2003 9:24 PM CDT

The countdown is on and we are all set for Texas. Flight arrangements are confirmed and everything that was sent Fed-Ex was received by Dr. Russell. Michael was given blood and platelets today so he should be all juiced up. He can't wait to get a Cowboy Hat. Today was a talent show in the hospital and all of the children and staff did a wonderful job. Michael told a few jokes and Anthony sang "Take me out to the ballgame"
Tommorrow is Frankie's last day of HAP, the summer program he tutors at. He will be excited to finally sleep a little bit later. I probably won't have access over the weekend to update but I will keep you posted when we return. Please pray that the flights arrive safely and the Vaccine does all that it is supposed to do to keep Michael free of disease.

Monday, July 28, 2003 9:53 PM CDT

NED!!!!! Those 3 letters are the best thing I can type right now. It is such a relief too see clean results. Michael is soooooo excited! He told me on Friday not to say too much about the scans because it might "JINX" the Bone Marrow REsults. He had alot of fun this weekend, he saw Spy Kids 3-D with 2 of his friends and went swimming on Sunday with his friend Samantha, who has a new dog that Michael and Anthony are still getting used to. I think it's changed their mind about getting one of their own. Counts weren't too bad today and he also had a hearing test done and thank God the results are about the same. Michael does have some high pitched loss, there is nothing that can be done for that. He is very fortunate considering the high dose Chemo he has had.
Anyway keep praying for Michael and the children battling this awful disease.

Friday, July 25, 2003 10:13 PM CDT

Michael had a much better night. The fever broke and we had a quick visit into clinic. The greatest gift for today is that Michael shows no signs of Neuroblastoma in his MIBG scan and CT of the HEAD. We will have Bone Marrow results on Monday. Considering where we were last year at this time, MIRACLES DO HAPPEN. Michael is so full of love,happpiness and humor. I truly beleive that all of those things combined with everyones prayers for him is what has gotten us to the point we are at.
It seems like there are new patients everyday in clinic. We will continue to fight this disease until there is a cure.
So many of our hospital friends are doing scans this week or just enduring such painful treatment. Please keep in your prayers for Michael, the brave and courageous friends of his Richie, Robyn,Harrison,Jesse,Chris,Alexa,Micaela, Michael .

Thursday, July 24, 2003 9:39 PM CDT

Michael woke up this morning at 6:30 to drink the contrast for CT Scan and was very warm. He wound up having a 101.5 fever. The went ahead and did the scans as planned. He was then put in isolation and given antibiotics, blood cultures were drawn. We almost went inpatient but he started to feel a bit better. Tonight he seems to be a little tired. We will return to clinic tommorrow for another dose of antibiotics. Hopefully he'll perk up over the weekend.

Wednesday, July 23, 2003 3:57 PM CDT

Michael has his Bone Marrow checked today. He woke up from Anesthesia in a pretty good mood. While waiting for Dad to donate blood we ran into a few Bayonne Police officers who were also donating for him. Thanks Guys!
We ventured to Radio Shack on Lexington Ave for ZIP ZAP cars for the boys. They are little remote control match box cars, very portable.
Tommorrow will be an early dat in clinic for us, 800 am CT scan. We probably won't have any results until next week.
Praying for NED!!!!!!!!

Tuesday, July 22, 2003 3:01 PM CDT

We are in NY today after a nice break. Platelets are holding on. YEAH! Tommorrow Bone Marrows are checked.
Tonight we are going to the Yankees game. Michael is eager to get the Matsui Bobblehead giveaway.
We'll update with results soon

Saturday, July 19, 2003 10:00 PM CDT

It's been a few weeks since we've last posted.
Michael and the boys are doing well. We moved into our new apartment at the beginning of the week. Takes some getting used to. Still alot of unpacking too. Mostly toys!
Michael went to the Springsteen concert on Tuesday with mom and he says BRUCE ROCKS. The week before it was Pearl Jam with dad. He spent Wednesday in clinic getting blood and platelets. Next week he is due for scans. Please pray for clean results. If all goes well we will be in Texas on Auguest 4th.
Please keep in your prayers all the children at clinic and the "Special Angels"

Friday, July 4, 2003 3:17 PM CDT

Happy Fourth of July!!!!!
Yesterday we paid our visit to clinic and Michael got platelets of course. The Bayonne Police has been very generous in going over to donate. We thank them and so does MSKCC. Michael will go to clininc again on Monday probably for blood. His hair is starting to grow in again. He may go to a Reading/Math program at his school for a couple of days . Please keep all his friends at the hospital in your prayers.

Monday, June 30, 2003 10:27 PM CDT

We arrived home safely yesterday after a really good time. The boys loved all the rides and yes Michael and Anthony went on Tower of Terror! All of the parks were very accomadating with letting Michael "Cut the lines" as he put it. We made a hospital visit on Wednesday and Michael got platelets. He was set for the boat..
We left Thursday the heat bothered him a bit. There were so many fun things to do on the boat. They really treated Michael and the boys special with little treats. Michael was invited to meet the Captain on Saturday. It was pretty fun to be on the Bridge. We attempted to go to the beach in Nassau but the humidity was so bad that he felt like he couldn't breath. On Sunday morning we got up at 6:45 am to head home. Suprisingly, Peacock the Beta fish was still alive being the house was so hot all week. . We forgot to ask Pop to change the water. WE like those kind of fish. Michael went into clininc today and actually did not need anything. It was nice to see everyone there today. Anthony had fun with his little friend Harrison.
Thanks for checking in!

Saturday, June 21, 2003 10:47 PM CDT

We are heading to Disney tommorrow morning in hopes for some sunshine. WE will be leaving on Thursday for the Disney Cruise. Michael finished school on Wednesday and is promoted to 4th grade. He was in clinic on Friday for Blood and Platelets and is all set to fly.
He's been feeling kind of crummy this week. He is on Accutane and that may be part of it. We've all had a long year and can't wait for this week. I'll still be praying and thinking of you all

Friday, June 13, 2003 11:34 PM CDT

Michael woke up really happy and looking pretty good. I seem to think that just knowing today was the last day of Antibody treatment is what really made him smile. This treatment has been so hard on him physically and emotionally. Something has to be said about 40 days in transplant and 40 days of antibodies....
His feet really hurt him when we got home. We decided to go to Toys R Us and then we stopped by RELAY FOR LIFE, sponsored by the American Cancer Society. The first lap is walked by ALL cancer survivors. Not only did Michael do the first 2 laps he ran most of the way. He was determined to get there tonight and be a part of "THE CELEBRATION OF LIFE"
I was so proud of him and so were so many of the spectators.
Next year we plan to be treatment free and make a MICHAEL TEAM to walk..
Please pray that the next few weeks bring enjoyment being off of treament and that all of these children on treatment find some sort of comfort after long days at the hospital.
Thanks and HAPPY FATHER'S DAY TO ALL!!!!!

Thursday, June 12, 2003 2:53 PM CDT

Michael had a long day at the hospital today. Antibodies, Blood and Platelets. He's feeling better now. Tommorrow will be his last day of Antibodies and then off to TEXAS for the next treatment in July.
Last night The Slumberetes had alittle birthday party for him at Ronald McDonald House. He was ver excited and they really cheered him up.
Please continue to pray for Michael and all of his friends here in NY.
Sharon

Monday, June 9, 2003 3:46 PM CDT

Today started the second week of cycle 4. God willing this is the last week of these dam* antibodies . The pain was pretty bad today and Michael felt like he couldn't breath. It's very scary. He slept most of the afternoon and we went back to RMDH. Thank goodness we found a parking spot only 2 blocks away today. I'll keep you all posted. His counts were good today hopefully that's a good sign!!!!!!!
We have tickets to the Yankees game on Saturday , Frankie hopes RoderClemens gets bumped from pitching this week and pitches his 300th on Saturday!!!!!
Have a great week!

Friday, June 6, 2003 2:53 PM CDT

The week eneded up being more milder than usual. He still had pain but I guees not as bad. Last night I took the boys via Limo to the MEts game. We had front row seats off of third base. They ate alot of junk and stuff. Today Michael was out of NY pretty early, he wanted to get to the school carnival in the afternoon. He made it alright with some time to spare to spend with his class. He is amazing
Have a great weekend. We will.... Michael is turning 9!!!!!!!!!!!!!!!

Tuesday, June 3, 2003 4:09 PM CDT

Today was not too bad forMichael. He always seems to get an allergic cough during Antibodies today it lasted about an hour. He got a blood transfusion too. The pain was not that bad today. After he woke up we went to lunch at his favorite resturant Toomashi for Broccoli with garlic sauce. Michael received a package in the mail yesterday with some pictures and autograph of Warren Sapp from Tampa Bay Bucaneers he was so excited!

Monday, June 2, 2003 2:17 PM CDT

Today started Day 1 of Round 4 of Antibodies. Michael went in the hospital looking soooo good today. Three weeks off and a big birthday party yesterday. He will turn Nine on Sunday June 8th. He had about 25 kids, a magician and a SPONGE BOB Ice CReam cake. We pray that the next two weeks go smoothly for him We are seriously looking into the Vaccine in Texas. Not know what the right decision is makes it harder. Michael received a very special gift yesterday:
A flag from the Airforce Squad in SEEB that was flown in a mission. The guys sent a shirt that they signed as well.
What a truly nice thing from the Men and Women defending our Country.
Thanks!!!
Sharon

P>S Anthony went to Kindergarten Orientation/Open House today He's not so sure he wants to go!!!!

Frankie has 1 more day left of 9th grade and he's out for the summer!!!!!!

Wednesday, May 28, 2003 10:18 PM CDT

Michael has been going into school as much as possible and is really enjoying himself. He went into clinic this morning for platelets and will not return until Monday when Cycle 4 of Antibodies will begin. He's been having so much fun playing baseball the thought of the next 2 weeks is awful. His birthday will fall inbetween the two weeks. He is having his party on Sunday afternoon. He's very excited.
Please continue to pray that the next two weeks are not so painful and for all of these children suffering with this dreadful disease.
Because Michael has been blessed with wonderful results, showered with so many presents this year he has agreed to donate the toys from his birthday party to a shelter for children. We sent a note in his invitations and so far everyone seems to agree. We thought he could bring a little sunshine to children who are less fortunate in other ways.

Wednesday, May 21, 2003 10:21 PM CDT

Today was Spring Prom at the Hospital . Michael had an appointment to be there anyway so either way he would have missed school.. He will be getting blood and platelets on Friday. His energy is pretty good. He has even been taking the State Test in school after being out for such a long time and he says" It was pretty easy"
You really have to love him!!!!
Tonight he was honored by the Bayonne Police Department and was made an Offical Police Director. Officer SMith gave him his badge right out of his pocket.
We were also able to get about 20 police officers to donate platelets at some point.
The medical director of pediatrics pleaded for us to try and recruit donators. The supply is very low at the moment
So if you or someone you know can go to donate at Memorial Sloan Kettering in NYC, many will benefit from it.
Looks like baseball will be rained out this weekend.

Monday, May 19, 2003 1:24 PM CDT

Michael is walking around so happy right now......
BONE MARROWS AND URINE MARKERS are all within NORMAL range.
No signs of disease at all. We are truly thankful and blessed to have such wonderful news.
Michael was so excited he wanted to call Frankie at school.
Please continue to pray that this disease is forever gone.
Last night Michael and a friend from Ronald Mc Donald House went to a fundraiser party for the house and had a wonderful time. It was like being at a wedding. For almost nine, he finds girlfriends all over. WATCH OUT Emily and SAm!!!!!
He's at school this afternoon with a smile from ear to ear!
We love you all !!!!!

Thursday, May 15, 2003 3:00 PM CDT

We received a email from Dr. Kushner that the MIBG scan shows no signs of NEUROBLASTOMA! That is the best news today. Of course we still await Bone Marrows and Urine Markers but considering what his MIBG showed last year this is a blessing. Someone is listening to all the prayers that are being said for Michael. Please continue to pray for him and all of the children who a fighting this dreadful disease.

Thursday, May 15, 2003 11:17 AM CDT

Yesterday after MIBG scan Michael went to school in the afternoon he had a SUPER time. He has a wonderful class.
Today he went again for a full day. He is amazing. Tonight we are going to the Yankee game. Yesterday the doctor did not have any official results but he did say that Bone Scan and CT Scan looked good. I'll take that anyday. Maybe tommorrow we may have results and if so I will definitely share them with you. We thank you all for being concerned about Michael. This is not an easy road traveled, but he has been such a good leader for all of us.

Tuesday, May 13, 2003 5:37 PM CDT

Bone Marrows were today and no results yet from yesterday, hopefully tommorrow we will have some preliminary. Michael looks and feels much better. Tonight they are playing board games at Ronald Mc Donald House. Keep praying that all goes well and this treatment comes to an end soon.

Monday, May 12, 2003 3:33 PM CDT

We atarted the week doing a BoneScan,CT Scan and Michael also need Blood and Platelets. It was quite a long day for us at the hospital today. Tommorrow he will have his Bone Marrow Checked. He's feeling a little bit better than he did all weekend. He didn't even play his baseball game on Saturday. He is very excited this week that Derek Jeter will back, we have tickets for Thursday Night. I hope the weather is good.
Keep praying for good results!

Saturday, May 10, 2003 8:49 AM CDT

Friday couldn't come quick enough for Michael this week. Yes everyone says he's a trooper and has so much courage. He really does, but he also has gotten to a point where he's had it. The pain is awful, his feet are hurting so bad after treatment and he hasn't really eaten during the treatment. He's really looking foward to our Disney vacation at the end of June. A week of freedom YEAH! We may have to get fingerstick midweek, but hopefully by then his platelets will come up. He's going to attempt playing his baseball game today. I hope he has enough energy.
To all of the MOMS "HAPPY MOTHER"S DAY". I have been truly blessed with the BEST 3 MOTHERS DAY PRESENTS EVER
FRANKIE, MICHAEL and ANTHONY !!!!!!!!!!!!!!!!

Wednesday, May 7, 2003 1:22 PM CDT

This week seems to be going a little bit better. Michael has been really cranky after antibodies. I guess the morphine really gets to him. 2 more days this week and he'll be able to enjoy the weekend at home. He got platelets again today. Last night there was a performance of Pocahontas at RMDH,the boys really enjoyed it!
Today at the hospital all of the MOMS enjoyed Makeovers and massages for Mother's Day. The kids thought it was cute to see their moms all made up in clinic. We are aiming at going to school for a few days next week. Baseball is going well for Michael too! We'll check in again at the end of the week.

Monday, May 5, 2003 12:14 AM CDT

After a fun weekend at home, Michael did play his baseball game on Saturday we returned back to the city last night. Frankie played soccers yesterday and his team is now in first place. Today's treatment was not too bad, yes he did get morphine but he did not scream in pain. Tonight they will celebrate Cinco de Mayo at RMDH. The boys are looking foward to it. Next week Michael will have a complete scan workup. Please pray results are still No Evidence of Disease. Hopefully he will get some school in too! He hasn't been there since October. He's looking foward to it.

Friday, May 2, 2003 10:16 PM CDT

This week was really rough all around for Michael. The pain involvement is heartbreaking. He is pleasing with us not to do more than 4 rouds of antibodies. This week he go blood and platelets and his white count is really low. The shots he gets before antibodies are supposed to boost them in his case they aren't. This has been such a long road for him and he is always a trooper butI don't know how much more we can expect from Michael. He went to the Yankee game tonight and he has a baseball game tommorrow , as well as Frankie having a soccer game. Sunday we head back over to NY for another 5 days of this AWFUL treatment. Please keep the prayers going not only forMichael but all of the children being treated with him.

Monday, April 28, 2003 7:39 PM CDT

After a WONDERFUL party on Saturday Night for Michael he stayed up until around 2 am. We can't thank everyone who helped out in some way more than enough. It was a memory to last a lifetime for him.
We came back into NY Sunday night. First thing this morning we headed over to the hospital for treatment. He needed platelets again even though he got them on Friday.
The shot that he gets with this treatment supresses the Platelets. The treatment was not anybetter today. The good thing is around 5 o clock he felt better and we walked to the store he was desiring Peas and Corn to eat. At around 6:30 all of the kids met in the dining room to make apple pies with Rebecca Rankin from Channel 7. It will air in about 3 weeks or so . Michael and Anthony were a big partof the taping. The end result ALL AMERICAN APPLE PIE that was delicious.
We're hoping that tommorrow will bring a little relief for him.

Tuesday, April 22, 2003 9:05 PM CDT

Clinic visit was short today. Aside from a fingerstick today, Michael walked out not needing anything. His platelets were low but the doctor felt that he could wait until Friday to be transfused.Hopefully they are on their way up. Have a great week!
Please keep in your prayers Michael and all of his clinic friends!

Saturday, April 19, 2003 9:09 PM CDT

We wish that everyday can be as fast getting to the hospital as yesterday. A record breaker 25 minutes from door to door. Michael felt pretty good but needed a pint of blood. His cold is getting better, no antibiotics. He played in his baseball game today for another win. GO STS AUTO!!!!!!!
We really do have to be thankful this Easter for the GIFT OF LIFE. God has blessed us very much this past year. Please keep Michael in your daily prayers. Treatment begins again on the 28th and Scans on May 13. I hope our Miracle will continue.
HAPPY EASTER!!!!!!

Friday, April 18, 2003 0:12 AM CDT

Michael got to enjoy his classmates yesterday outside in the beautiful weather. He ate lunch with them, played wiffle ball and had some ice cream. He later went to the Yankee game. Today he and Anthony had their picture taken with the Easter Bunny. Tommorrow is a clinic visit in NY.
We hope you all have a JOYOUS Easter.
If you could all keep in your prayers a special friends
grandaughter, Faith who became an angel this week at the age of 3 months.

Monday, April 14, 2003 9:52 PM CDT

All is well with Michael he still has a bit of a cold and cough. It didn't stop him from playing baseball this weekend. His team won 17-0. Michael had a single, walk, and I think 2 RBI's. He feels the cold a little more than others. Today he met his class outside in the courtyard. TThey were so excited to see him. The sickness in the building is really bad. We were advised not to send him.
He will go back on Wednesday to meet them again. Tommorrow is a clinic visit. Maybe he'll need platelets. He is getting very excited about the Fundraiser the Elks club is sponsoring for him. The response has been overwhelming. We'll check back soon.

Wednesday, April 9, 2003 4:54 PM CDT

Michael woke up today not feeling that great runny nose, scratch throat and his left ear hurting. I took him into NY right away. Everything looked clear. Hopefully it will not brew into something more than a cold. I'll have to keep a watch on him for a fever. That was a suprise post for today. We hadn't planned on the ride into clinic!

Tuesday, April 8, 2003 11:05 PM CDT

Today's visit to clinic was an adventure. It toook us 1 hour just to get out of Bayonne. FRankie had to get out of the car and catch the Lightrail. Michael's counts were pretty good today. He did need platelets. There was a group of Students from Hewlitt High School in Log Island who sang and danced. The raised $18,000 over the weekend to donate to Pediatric Cancer at MSKCC. If all goes well Michael will be going to school on Monday. He is very excited. His teacher came yesterday to work with him and they had alot to catch up on. He has a runny nose tonight and felt cold so I hope he's not coming down with something. Talk to you again in a few days!

Friday, April 4, 2003 10:52 PM CST

TGIF... Michael is really happy to be home. He was excited to play with Frankie when he got home. We thought he would be able to go to school for a bit this week but there have been too many kids being sent home sick with fevers,sore throats etc... Hopefully in about another week he'll get there. He's even willing to "Eat lunch in the principals office" He is just too cute. He lost some weight in the past two weeks but hopefully that too will come back. He had his last radiation treatment today and they gave him his mask and leg mold to bring home. He listened to the tunes of Avril Levigne during his radiation session. He isn't scheduled to be back in clinic until Tuesday. Monday he starts taking Accutane again. Have a good weekend!

Thursday, April 3, 2003 3:41 PM CST

This week has kept us on our toes as you can see I haven't updated. Michael has been so good this week. The pain has been there but he has tried so hard to focus on something else. The radiation team on machine 444 has been so wonderful to him. Today he pretty much got a little bit of everything, radiation, antibodies, platlets, blood and radiation again. Tonight we are going to eat with one of the other families here from Philly. Last night Michael won at BINGO . There is really neat made to order cake speciality store here in NYC. We went and looked at the creations in the books today. He makes them mostly for Actors/Actresses. Tommorrow we should be out early and headed home. Anthony spent a few days with us this week and Frankie has been practicing for soccer and track. He may be headed to the PENN RELAYS! That seems all for now. Have a GREAT weekend!

Friday, March 28, 2003 8:00 PM CST

First week of treatment is over and didn't end on a good note. The pain was pretty bad and Michael was just out of sorts. He's feeling a little better now that we are home for the weekend. He ate agood dinner and is playing games. We'll go back on Monday for Part 2.
Please keep praying for a painfree week. We've changed the webpage background to keep the American Pride, please pray for all those overseas fighting for "US"

Thursday, March 27, 2003 10:45 AM CST

Today is day 4 of Antibodies, the first day of Radiation and day 86 post transplant! Antibodies are a little better this week. The Radiation team that Michael has assigned to him a 3 really nice people. Michael is a really good patient so it makes their job easier. Last night was Bingo at Ronald McDonald House. We didn't leave the hospital until around 6 pm a few last things to make sure the radiation was PERFECTLY set up! We had a pizza and the boys watched survivor. Today is Child Life DAY in the hospital and those Therapists sure do deserve a round of applause for ALL they do! Take Care and enjoy the weekend!

Tuesday, March 25, 2003 4:33 PM CST

Day 2 of this round and things aren't so bad. They increased Michael's pain medicine a little bit. After treatment today we went to the Central Park Zoo. The penguins,polarbears,seals were all out. Michael and Anthony had a blast . Anthony even walked back part of the way LOL He always complains his feet hurt. Thank goodness Michael has a stroller they swap rides in. Platelets were given yesterday again. thank goodness for all those who keep coming over to donate. It is really appreciated.
Last night we went to Tony DiNapoli's for dinner and Michael ate a total of about 2 1/2 pieces of chicken francese. Way to go!!!!!!
Keep checking all week for updates

Sunday, March 23, 2003 8:23 PM CST

I posted on Friday and apparently it didn't go through. Anyway, Friday was a long day for Michael in the hospital he got blood and platelets. We didn't leave the hospital until 5 pm after the nurse realized she hadn't flushed his line and need to stick him again without having the numbing cream on. HE cried a bit, but we shared a joke. We got into the parking garage and some nice guy said hello to him, he very politely said hi back. We got into the car and saw the attendants talking to him, Michael realized it was a sports player. He then came over to the car and asked Michael how he day was, he shared his it was someone from the Miami Dolphins. Saturday he made baseball practice and then went to get a new glove and new cleats. We also ventured to the OUTBACK STeakhouse. Today was the St. PAtrick's day parade in our town and we went to watch. Michael favorite part...... The Bagpipers! There were about 11 groups marching this year. Tommorrow it's off to another week of those horrible antibodies and the start of radiation. Please pray this next round is a bit easier and less painful.
The emails he gets here really cheer him up the funnier the better. So thanks for taking the time to bring a smile to Michael.

Wednesday, March 19, 2003 4:16 PM CST

Monday's clinic visit brought Michael a bag of platelets. We were home by about 1:00 He's really enjoying his time home. This week Frankie is off from school. Monday Michael return to NY for 2 weeks of Antibody treatment. He's not a happy camper about it. Today he was interviewd for a story to be written for Tommorrow's Childrens Institute at Hackensack Hospital for their Charity Golf Outing. The writer drove 4 hours from Boston for an hour of talk with Michael. He said he would write a wonderful story about Michael. The Elks Club,Emerald Society and Vietnam War Vets are putting together a fundraiser for Michael to be hald on April 26th. Michael is very excited to be able to go to a big party! Please pray that the pain is not so bad for him during the next round of treatment, he will also be doing radiation for 7 days in the same 2 weeks. Pray that this is tying up the end of treatment for him.

Wednesday, March 19, 2003 4:16 PM CST

Monday's clinic visit brought Michael a bag of platelets. We were home by about 1:00 He's really enjoying his time home. This week Frankie is off from school. Monday Michael return to NY for 2 weeks of Antibody treatment. He's not a happy camper about it. Today he was interviewd for a story to be written for Tommorrow's Childrens Institute at Hackensack Hospital for their Charity Golf Outing. The writer drove 4 hours from Boston for an hour of talk with Michael. He said he would write a wonderful story about Michael. The Elks Club,Emerald Society and Vietnam War Vets are putting together a fundraiser for Michael to be hald on April 26th. Michael is very excited to be able to go to a big party! Please pray that the pain is not so bad for him during the next round of treatment, he will also be doing radiation for 7 days in the same 2 weeks. Pray that this is tying up the end of treatment for him.

Wednesday, March 19, 2003 4:16 PM CST

Monday's clinic visit brought Michael a bag of platelets. We were home by about 1:00 He's really enjoying his time home. This week Frankie is off from school. Monday Michael return to NY for 2 weeks of Antibody treatment. He's not a happy camper about it. Today he was interviewd for a story to be written for Tommorrow's Childrens Institute at Hackensack Hospital for their Charity Golf Outing. The writer drove 4 hours from Boston for an hour of talk with Michael. He said he would write a wonderful story about Michael. The Elks Club,Emerald Society and Vietnam War Vets are putting together a fundraiser for Michael to be held on April 26th. Michael is very excited to be able to go to a big party! Please pray that the pain is not so bad for him during the next round of treatment, he will also be doing radiation for 7 days in the same 2 weeks. Pray that this is tying up the end of treatment for him.

Sunday, March 16, 2003 3:16 PM CST

Second day of baseball practice and for a kid 75 days post transplant he's looking pretty good. It's amazing the strength and stamina Michael has. We didn't have a town parade today it will be next week and Michael is exited to watch it. We're going to make Shamrock lollipops tonight. Hopefully tommorrow we'll have some good counts and a quick visit to clinic.

Saturday, March 15, 2003 2:46 PM CST

Michael is counting the days until Spring! He's hibernated enough all winter. Yesterday he went to the playground and came home and played in the yard with his friends Doug and Jeff. He had so much fun! Today he went to Baseball practice with his team. He was so excited! I think he's going to enjoy the sunshine and nice weather coming our way. His hair is starting to sprout back too, we can see little stubbles. He's happy about that too!
Overall, he's come a long way since last March. We are truly blessed to have this recovery. Thanks to everyone to has him on every prayer list going.

Thursday, March 13, 2003 6:35 PM CST

Today was a pretty good visit to clinic. White count is pretty stable. He's actually in the low range of normal. YEAH! Didn't need any blood products today either. Michael just sent 3 pieces of art work to National Childhood Cancer Foundation for their annual contest. He didn't go with the Christmas theme this time. HE sent Thanksgiving and a BAseball field. Happy Weekend to All!

Wednesday, March 12, 2003 9:49 PM CST

It is nice to have some time off and just checking into clinic twice a week. Platelets are still an issue and there seems to be a real shortage in the blood banks. So if you or someone you know can go over to donate it will benefit Michael directly. He's been getting them twice a week. We appreciate anyone who had taken the time to already do so.
Baseball is starting soon and Michael is really excited to get out there. His team has outdoor practice on Saturday so he will probably be able to make it. Treatment will resume again on 3/24 if all goes as planned. Thank you all for the cards, notes etc. Especially the ones with jokes, he really enjoys them. He has some sense of humor this kid!!!!!!!
Looking for Spring not tommorrows snow that is expected!

Friday, March 7, 2003 10:21 PM CST

TGIF This whole URGENT CARE routine stinks for Michael. That is where we have to go for out check up in this isolation period. Today we were there from 8:30 - 3:00 for a blood transfusion. His white counts seem to be holding on. Michael and Anthony had fun in the snow yesterday.
Michael is counting his days that he can be back in school
Probably the first week of April YEAH!!!!!!
Have a good Weekend!

Tuesday, March 4, 2003 5:48 PM CST

Yesterday was a long day for Michael. He started off in the Pediatric Clinic to have his blood checked and all was well. No transfusions needed! At 11:00 a.m we headed down to radiation simulation with Anthony and Michael's Child Life Therapist Jen- who by the way is so sweet as they all are. The first part of the radiation simulation was the head, Michael needed to lie on the table as they placed a large piece of softened mesh. It was heated and it molded to his head/face. It was also bolted into the table so he didn't move. He was so good The process took about 35 minutes. Then they went on to the leg. They made sort of a foot rest of styrofoam and melted wax. The final step was "TATOOS" in 3 spots on the head and 4 on the leg. These are markings for them to go by when they do the actual radiation. They look like a small freckle. HE has 3 on his belly from the last time around. The radiologists were so impressed with his behavior they gave him $2 for ice cream. We ended the day with Ice Cream from Stop and Shop, a Promo they did as an unveiling of their Sponsorship. So if you see the posters in Stop and Shop they are some of Michael's friends. All the proceeds go to the Pediatric Department.
Today Michael and Anthony baked a Baseball cake and Frankie came in 1st place in the Relay and 2nd in the Shotput. Today starts Michael's isolation from the clinic after being exposed to the chicken pox last week. We won't be back there until 3/26. Hope Urgent Care treats us well!

Friday, February 28, 2003 5:18 PM CST

As rough as this week was we made it through and home safely. Monday started off with pain as usual . On Tuesday we were hit with someone have Chicken Pox and being in clinic. Being that Anthony was in the playroom with this child he needed to have his Blood Titers drawn and Michael being so close out of Transplant needed to get a shot. It caused alot of confusion and delay for our "Fun" plans on Tuesday. I sent Anthony back home on Tuesday night and on Wednesday he needed to come back to NY to get the shot because he did not have the Titer to Chicken Pox. So after being at the hospital until 5 with Michael and getting orders for Anthony I headed back to Urgent care for 2 hours with Anthony. He was so brave getting 2 shots one in each leg. Michael did the same on Tuesday. Thursday was kind of rough we did manage to go to dinner in NY and Michael ate pretty well. Todays treatment was better not as much pain. He did get platelets . On Monday Michael will go to the radiation department to get set up for a radiation at the end of the month. The spot on his leg and some spots on the skull, which seem to be scarring to the bone will be done. The doctors feel radiation will be preventative for relapse again. He's doing so well and has come so far we want to hold on to that. March will be a busy month for him.
Please pray that neither one of the boys gets the Chicken Pox! Thanks for always being there for Michael in thoughts and prayers!!!!!

Saturday, February 22, 2003 11:05 PM CST

What a perfect background for Michael! He LOVES fishing. We left NY this morning in all the rain. He was happy to get home. Not looking foward to going back for more Antibodies on Monday. He's making the best of it.

Friday, February 21, 2003 2:17 PM CST

TGIF- Same today as all week. Hopefully next week will be better. Michael actually doesn't want to go home tonight, there is an UNO tournament night here and he wants to play.
Counts are hanging on. Platelets are taking so long though
He will need more again on monday, Have a good weekend!

Wednesday, February 19, 2003 2:43 PM CST

What a hard time we had getting to the hospital on Monday. Thank God we got into the city on Sunday night. We had to walk in the morning because the van was not running and not a taxi to be found. Michael was sort of winded and Frank needed to carry him a few blocks. Anthony tagged along as well. The treatment started on Monday and the pain is absolutely awful. Tuesday I think was the worst. Today was a little better but he still needed Morphine to help alleviate the pain. The streets here are MUCH better and we can get the stroller back and forth. We've rented a few movies from blockbuster and just relaxed. Today is day 50 Post transplant- Michael is halfway there YEAH!!!!!!!
Two more days this week and then next week of the same treatment.
Please keep praying for a pain free week.

Friday, February 14, 2003 8:30 PM CST

Happy Valentines Day to all. This was a GREAT week for all especially Michael. The boys were all excited that there are no signs of cancer/ Michael said " I'm going to put it in a can and squish it and send it to Mars. I beat this twice and don't ever want to see it again" His determination and outlook is wonderful.
We truly are greatful for all of the blessings given to us and for the power of prayer. There are more prayers being said for such a special boy, keep them going. The antibody treatment can be very painful. So the prayers now should be for not much pain.
Thank you all for your kindness and support throughout this treatment. Michael has such a wonderful support team.
He's the leader and we're the players!
There are so many new children diagnosed at MSKCC with NB please continue to pray for them and their families as we all fight this disease!

Wednesday, February 12, 2003 4:55 PM CST

Bone Marrow Aspirates are NEGATIVE! Way to go Michael. With those results Michael will be able to start Antibodies on Monday. We will stay at Ronald McDonald House for the 2 weeks and come home on the weekend. He looks so good you really wouldn't beleive all that he has gone through. Aside from the Blood Transfusion today everything else was ok in clinic. They had a showing of KANGAROO JACK which was a treat! He really was in a joking mood today.
We'll check back in soon! Keep Warm!!!!!!!

Monday, February 10, 2003 9:51 PM CST

After a nice weekend at home we went into clinic this morning. Michael needed Platelets again today, his weight was pretty good. Most important- SCANS ARE NEGATIVE!
This is the best news I have to report! We still don't have the results from the Bone Marrow Biopsy. He will return to clinic again on Wednesday. The plan is to start Antibody Treatment on Monday. It will be for two weeks outpatient with a three week break inbetween.
Michael is planning on writing his Valentine Cards for his class tommorrow. In my book he is everyone's Valentine.
Check back for the rest of his results, but please pray they are negative!

Friday, February 7, 2003 12:42 AM CST

Happy Friday! The snow was fun this morning walking to the hospital. Michael was in the wheelchair and Anthony in the stroller. Michael got another platelet transfusion today and is getting his temporary line out while he is under anesthesia having his Bone Marrows checked. He also did a photo shoot for the Memorial Sloan Kettering Blood Donor Program to be put on their website at the end of the month. So far Michael has had 72 donations in his honor. I will post their website address as soon as I'm notified it's on their . We're going to pack it in and go home to Bayonne tonight. He has so many toys and bags we may have to make two trips. He's eager to get home to eat real food and be comfy in his own house.
Have a restful weekend!

Thursday, February 6, 2003 2:02 PM CST

It's been a few days since I've posted. We are at Ronald McDonald House and Michael is pretty much confined to the room. Today he had his MIBG scan and beginning of the week were Bone and CT Scans. His counts were looking pretty good today White is up to 4.8 and the ANC is 3.0
He did get platelets yesterday and tommorrow he will be going under anesthesia to have his Bone Marrow checked and a Spinal Tap will be done as Post Transplant check.
His apetite is getting better. He is very anxious to get back to school hopefully by the end of March.
The plan will be for him to start ANTIBODIES on February 16th. He looks pretty good and has alot of energy.
Keep praying that scans show NO EVIDENCE OF DISEASE!

Saturday, February 1, 2003 10:25 PM CST

41 days in the hospital and 32 days Post Transplant finally got to go home. He was so excited to be disconnected from his IV pole. He's back on IV tonight at home but at least he's sleeping in his own bed. He has to take a few medications by mouth and get a shot at night but it beats being in the same room for so long. He did eat the Chicken Francaise when he got home and it stayed down along with some Iced Tea Way to go MICHAEL!!!
I guess the hospital food wasn't appetizing to him.
Tommorrow we will celebrate Frankie's birthday which is really on Monday and then we will head back to RMDH for a week of scans. Please pray that his scans are still
NO EVIDENCE OF DISEASE-
We can't thank our family and friends enough for helping us out and for being so supportive during this time.
We are also greatful to the people that we don't know and still helped out by donating blood/platelets.
The doctors, nurses, Child Life Staff, Social Worker, Volunteers, Cleaning and Food Staff were all so wonderful to Michael during his stay.
We are truly greatful for having a not so bad time through transplant. Michael has definetely been a source of courage for so many people. They say "When the going gets tough, the tough get going" that fits him to a tee.
When he got home he was listening to some music on the computer and he put on his favorite song by Mariah Carey "HERO". I hugged him and told him you don't have to be a famous sports fan or an adult who has done something so extraordinary to be a hero. HE CERTAINLY FITS INTO THE HERO category in my heart for his STRENGTH, DETERMINATION, BRAVERY AND COURAGE! Thank you all for letting me share his story with you each and every day. God willing he is on the Road to Recovery. But please still check in and see his progress. Thank you!

Friday, January 31, 2003 at 08:08 PM (CST)

Well Michael didn't make it home today. Just as a precaution they kept him to make sure he didn't show any signs of infection. He took it rather well though. He had a suprise visit by a Bayonne Firefighter, who happened to go to high school with Michael's dad and his wife teaches in Michael's school. He was also nice enough to donate blood. He promised Michael a ride on the truck as soon as he feels better.That really brightened his day today. Hopefully tommorrow will be the day!

Thursday, January 30, 2003 at 10:29 PM (CST)

Just as Michael was calling it a night he started to react to a blood transfusion. He got the chills and then he threw up. All vital signs were good They stopped the transfusion and will send the blood back to the bank for testing. He was also kind of mad the Rangers lost too! Hopefully this won't affect him coming home tommorrow

Thursday, January 30, 2003 at 07:18 PM (CST)

Boy do we have GREAT news! Michael is going home tommorrow. His counts are up a bit and the doctor is comfortable sending him home on IV until early next week. He is so excited. Next week he has a busy week in the hospital outpatient Bone Scan, MIBG Scan and Bone Marrow Checked. CT Scan will be later on in the month. He'll probably get transfusions in the morning before he goes home. He'll be home to celebrate Frankie's birthday this weekend THE BIG 15! Anthony is so excited for Michael to get home. Tommorrow will be 40 days in the hospital! A long haul but hopefully well worth it

Wednesday, January 29, 2003 at 10:16 PM (CST)

Today was a good day for Michael. He woke up early, did some school work with his hospital teacher. Did a science project that was pretty interesting! He's working on a special art project too! Yesterday he painted on canvas it came out so nice. The counts went down a bit today but the doctor wasn't worried about it. They removed some of the antibiotics and started giving them orally. He ate a little bit better today-he's afraid he will throw up. He got dressed in jeans and sneakers and was dancing around the room.He is very funny! Thanks to everyone for the kind words, wonderful messages and well just SUPPORT. The doctors, nurses and staff have been wonderful and for that we are thankful too!
This little guy is a champ!

Tuesday, January 28, 2003 at 12:56 PM (CST)

Happy Tuesday! Michael got platelets this morning at 5:30 am in preparation for the Bone Marrow Testing. His nurse told me that his white count was 2.1 YAHOO! So needless to say he test was cancelled His ANC is now 1.0 He's on a roll
Musicians On Call came in to sing to him and the singer thought is was apropriate to sing "Yellow Submarine" since we were all gowned up in yellow. Michael thought that was funny!
The doctor ordered another antiobiotic to be taken down and another on every other day instead of every day We're going in the right direction.

Monday, January 27, 2003 at 09:53 PM (CST)

Counts are still an issue. They are coming in slowly. Today he was 1.4 and ANC .6 Tommorrow the docs might check his bone marrow to make sure the cells are maturing. It depends on his morning blood draw. He looks really good today. He had an echocardiogram today as part of follow up. He thought he would get out of the room but they brought the machine to him. He ate some soup today and a little bit of Alfredo noodles. Lets pray that the marrow doesn't need to be checked tommorrow !

Saturday, January 25, 2003 at 06:33 PM (CST)

Happy Saturday! The counts are jumping WHITE 1.4 and ANC 0.6 Michael is feeling pretty good. They took the PCA(Morphine) Pump down- he really didn's use it anyway.
They also went down on the volume of TPN(Nutrient Bag) His class sent him a huge poster for his room.The doctor will be in on Monday and I guees we'll have a better idea of when he'll be home. We'll probably stay at Ronald McDonald House for a few days because he needs to be seen in clinic about 3 times a week. Well thanks again for everything, prayers, cards, presents and blood and platelet donations!

Thursday, January 23, 2003 at 10:40 PM (CST)

Michael started off his day rather early 9:45 a.m. and his counts today were 0.8 He didn't need any blood products. Tommorrow they may take him off of the first antibiotic. That may be the delay for the counts not coming back. He was pretty active today. He ate 5 mini pizza rolls and drank some gatorade today GOOOO Michael! Considering how cold it is here i think he' better off inside right now. Hopefully he'll be able to come home next week if all goes well.

Wednesday, January 22, 2003 at 11:28 PM (CST)

Today wasn't so bad for Michael, his counts went up to White 0.7 and ANC 0.3 Platelets were good thanks to the strong donor. He will probably get blood tommorrow
He really is keeping himself busy. He made the Superbowl Pool for the playroom - it's for prizes not cash!!!!!!
He had some volunteers come by and visit today too!
Didn't really eat too much though he's maintaing his weight with the IV Nutrients.

Tuesday, January 21, 2003 at 11:24 PM (CST)

The count remains the same today 0.5 Platelet transfusion this afternoon too. Michael enjoyed Nintendo with one of the volunteers tonight and ate Spaghetti O's He worked on a superbowl poster as part of a playroom project. He's taught Mom how to lay a new board game MANCALA He's pretty good. We painted the windows with Superbowl stuff. The cleaning people aren't going to us when we leave. Next week he will have his bone marrow checked if counts don't go up a little more. He tried Olives tonight and they just didn't taste right I thought h was going to jump out of the bed watching the RANGER game tonight -Shut Out against he Islanders WAY TO GO!!!!!!!!!
Please keep him in your thoughts and prayers!

Monday, January 20, 2003 at 08:12 PM (CST)

Yesterday was 4 years since Michael was originally diagnosed. If you look at it that way it's half of his life. A family at the RMDH had buttons made up that said "Cancer Sucks Club" how appropriate for yesterday This does really stink seeing Michael go through such an ordeal and the other boys too have their lives interrupted. Frankie has been so good about sleeping here the past two Saturdays. Anthony puts on a smile just going to Michael's door and scaring him! Michael banged his head on his IV pole yesterday and today the doctor ordered and XRay Everything came back fine. The thought of bringing him out of the room is the scary thing. Dr, Kushner stopped in today and told us Michael has his complete scan work up soon,. So as soon as he;s discharges he'll be in the outpatient clinic quite often between the scans and transfusions He will most likely need platelets again tommorrow, The white count remained at 0.5 today
He ate a little bit of Alfredo Noodles and sipped Iced Tea
hopefully tommorrow will be the same
Keep those prayers going we're on the rise!

Sunday, January 19, 2003 at 12:11 PM (CST)

Platlets ,Platelets He's getting them again! The platelets are only 15,000 today. Blood is still good after transfusion yesterday. Michael's white count is 0.5 today it's heading in the right direction. Frankie spent the night with Michael and dad in the hospital and Anthony slept at RMDH with Mom. Football game today is not as exciting as if the Jets were playing. Michael is routing for the Eagles today! He looks really good. If we could only get him to eat and drink a bit
Many people came to give blood and platelets again this week and more are scheduled to come We really appreciate the time everyone has taken to help Michael out

Saturday, January 18, 2003 at 05:26 PM (CST)

Michael is at 0.3 again today. Today is day 26 in the hospital and he's not climbing the walls yet! He did a science experiment with the Child Life Specialist today and he's working on a suprise birthday present for Frankie! He did receive a blood transfusion and still is getting sick to his stomach on and off. He really doesn't want to eat either! He said he wants moms Chicken Francaise when he gets home- that's Frankie's favorite too!
I'm sure he'll be here for at least another week. His nurses have been just WONDERFUL!!!!!!!! Child Life has been GREAT!!!!!!! and the response for Blood and Platelets donors is SUPER! We thank everyone that has done something special for Michael. Keep praying for counts.

Friday, January 17, 2003 at 05:06 PM (CST)

Sleepyhead did not wake up today until 1:15 p.m. Everyone waits at the door for him, The Teacher, The Nurse Assistant to weigh him and the food service attendant to order him breakfast. His count is a 0.3 today He did receive another platelet transfusion today. Overall his skin and mouth and throat are much, much better. He's working on his 6th Lego Masterpiece- The Blue Thunder!
Anthony is here at RMDH and Frankie had Exams and Track today. Keep praying that he counts double, triple and he can be home in a week or so!
Happy Friday!

Thursday, January 16, 2003 at 11:08 AM (CST)

Today Michael's counts are still 0.2 But he shows signs of a .2 ANC which is good. He has been getting platelets alot this week. He finally finished the motorcyle he was working on 1,300 pieces He really has been a trooper for the past 24 days. They are starting to taper down some of his medications which is another good sign.
Hopefully he won't be in too much longer. He enjoys reading all of the posts and opening the mail that he received. Thank you all for being on his cheering team!

Monday, January 13, 2003 at 07:22 PM (CST)

So the Jets disappointed Michael. He took it ok. Must have felt good watching the game because he ate popcorn, of all things. Today the count is back at 0.1 His sores are much better and he ate some Ramen Noodles tonight and kept it down. Way to go! He's routing for the Eagles this weekend
The best is yet to come YANKEES!
Thanks to all who have been signing the guest book it really cheers him up when I read him the messages. He has an AWESOME group of fans!

Sunday, January 12, 2003 at 10:50 AM (CST)

Yesterday the count went back to 0 He had a rather good day though. He is sipping slowly very slowly. Frankie and Anthony spent the night and Frankie stayed at the hospital and slept in the room with Michael and Dad. Today Michael is bac at .01 and will need Blood and Platelet transfusion. The BIG Game is on today JETS JETS JETS
GOOOOO TEAM! He will be psyched when they win!
Thanks to all who have come to donate at the blood bank it really is apprecited!
Keep praying that these counts recover quickly!
We are at Day +12 Post Transplant and so far we have been blessed greatly!

Friday, January 10, 2003 at 09:52 PM (CST)

Happy Friday! We finally see some white counts moving! Michael is at .01 today. He still has a way to go but this is a start His nurses are trying to get him to eat or drink a little something. He played alot today. He was very excited to get his Angel Quilt today, it is a computer quilt of all sorts of things that can be added on to The site is one of his links. We're on a BAckgammon roll he's pretty good. Football will be big on his agenda this weekend!
Take care and thanks for checking in!

Thursday, January 09, 2003 at 08:51 PM (CST)

Michael caught some more MIDTOWN MAGIC TONIGHT! Mrs. Czuba, Mrs. Mercier and Mrs Farkas came to donate blood and platelets and paid Michael a visit. They bought some many special treats. He's going to pass some MCS magic to his nurses with his Magic Wands! MCS is a very special place. Look out the 3rd Romano will be going there soon too!
He is feeling stronger today and his throat is starting to feel better. He is at Day +9 and Day 18 in the hospital.
Keep the prayers going and those counts should come back soon!

Thursday, January 09, 2003 at 03:32 PM (CST)

Michael had some real good energy yesterday he was out of bed and monkeying around. He helped Rosemary the Nurse Assistant make his bed--- I wish he did that at home.
WE played tons of Backgammon. One of the Resident Doctors husband has a Lego Website so he spent alot of time on that. Around six o clock he didn't feel too good. He threw up and then needed a platelet transfusion he slept most of the night. No white count again today . The Big Apple Circus clows were entertaining him today. They are so funny
Dad is in Ny with him today and Mom came home to see Anthony and Frankie. The boys really really miss him.
Hopefully we'll have some good news to report count wise over the weekend.

Tuesday, January 07, 2003 at 09:55 PM (CST)

I feel like I'm writing the same thing everyday, for now that isn't bad because it only says that Michael is doing ok. The Doctors are happy with what they see so far but we are still aren't out of the woods until they see some counts. His Kidney and Liver functions seem great and his urine markers are in normal range- that itself is a GREAT sign. He is just one amazing boy. I remind him all the time how good the support is that he has and how special he is to so many people. Doctors say counts may take another week to come up. His hair is starting to fall out but that never was an issue with him, we bought some real cool scrub caps if he wants to wear something.
Michael slept until 2 this afternoon so I think it will be game night tonight!

Monday, January 06, 2003 at 10:43 PM (CST)

Michael sure did alot of sleeping today. He woke up at 1 pm and played for awhile. Fell back to sleep at 5:30 until around 8:30 He woke up crying because he missed Bingo. I played for him and he won SpongBob Uno Cards. He'll play on Thursday. His counts are the same- he got Blood and Platelets tonight. The sores are still there he can't even swallow the Tylenol Caplets he went back to the Cherry Liquid tonight. The Doctors were calling him "Superman" today. Frankie played his first Rec Hockey game tonight and his team won.

Sunday, January 05, 2003 at 03:58 PM (CST)

Well it was a good weekend for Michael overall his spirits are good and the JETS had an awesome game. Michael was very excited. Frankie and Anthony came on Saturday and Anthony peeked at the door , it made the both of them so happy. Frankie spent about 7 hours at the hospital with Michael it was good for both of them. The chicken fingers kept him happy Anthony stayed at RMDH with Mom and he was just glad to be around everyone here. Michael slept until 1:30 today. I guess he needed that. Other than the mouth he has no other complaints. The doctor said it still may get a little worse. Today he has a mouthsore under his tongue He is being very tolerable of this pain . Yes he is my HERO!
Dad is going back to work for a few days and Frankie goes back to school tommorrow!
Anyone wishing to send card they can be mailed to
Michael Romano
Ronald McDonald House
405 East 73rd Street
New York NY
Room 703

Friday, January 03, 2003 at 08:16 PM (CST)

Day +3 and Michael is still amazing He'e been going about his business building MegaBlocks- He is starting is 3rd piece the Motorcycle- 1130 pieces WOW Mom went to ToysR US in Times Square today he can't wait to start building, The mouth is still the issue and will be for a little bit longer. This weekend is a big football weekend so hopefully that will distract him from other things GO JETS!
FRankie and Anthony are coming over tommorrow to spend the night WE MISS THEM! That's about all today, no news is good news!

Thursday, January 02, 2003 at 04:01 PM (CST)

Day 2 Post Transplant and so far it's still going ok. The sores in the mouth are awful, he is only complaining about the ones in the throat. The doctors and nurses are amazed at how BRAVE Michael is. He hasn't pushing the pain medicine., His counts are still ok today., He was running a slight Temp earlier so they started him on an Antifungal medicine to be on the safe side., He will probably decorate his room windows later with Jets and Rangers window clings., You can find just about anything in NYC.,
He's sleeping now and will probably wake up for a mean game of BINGO at 7!

Wednesday, January 01, 2003 at 04:38 PM (CST)

Michael was in party mode last night. After an hour of cards he stayed up to welcome in the New Year! He had a pretty good nights sleep as well. Today he's feeling good He was up and talking alot. A few volunteers stopped by to visit as well as dad's friends Mark, Bobby and Therese who made a visit to the blood bank. Michael has finished a Lego Airplane and today he is starting on a Monster Truck. His mouth sores are still there may be getting worse He has been really good with the pain. They gave him a PCA pump in which he can give himself pain meds if needed. His white count is O and blood and platelets were ok today after being transfused both of them yesterday!
Michael is very fortunate to be part of the Midtown Community School family. The teachers and staff have been so kind and generous in so many ways.
Special thanks to Mrs Dooley and her family for their kindness and generosity
Mrs. Klimkowski and the Bayonne Cancer Support Group at Pamrapo Bank.
Michael truly has a wonderful support system from family and friends
The Staff at Kimber CAre- Anthony's preschool have also gone above and beyond doing special things for Michael.
Hopefully 2003 will be a year of Health and Luck for ALL of us!

Tuesday, December 31, 2002 at 02:46 PM (CST)

Happy New Year! Stem Cells were give at 2:35 this afternoon. The whole process took about 1 hour. They were dripped through the IV. Drs Persaud and Chou were here as well as Michael's nurse Lara. He has fallen asleep which I think the rest will do him good. Our wishes for a Happy New YEar and a Healthy one go out to all of you who have been so supportive in this fight.

Tuesday, December 31, 2002 at 11:08 AM (CST)

Yesterday Michael was feeling a little bit better He woke up under the weather but then perked up in the afternoon./ He was playing games for quite some time. HE took a nap and woke up just in time for BINGO. He won a watch last night. Yesterday the hospital celebrated Kwannza all the kids got Lego Airplanes/Trucks He's been working hard trying to get it together. Last night some pieces were missing and after looking all around the room , in the garbage, etc we found them in his pajamas. I guess when I put his pants on they were lying on his leg. He had another good nights sleep. Today 12/31 is the BIG DAy he will get his Stem Cells back around 2 PM. His friend Samantha sent a New Years Eve basket he had fun making noise last night. Tonight he will probably not eve feel good. I'll post after infusion Please continue to pray that he feels ok through this. HAPPY AND HEALTHY NEW YEAR TO ALL!

Tuesday, December 31, 2002 at 11:08 AM (CST)

Yesterday Michael was feeling a little bit better He woke up under the weather but then perked up in the afternoon./ He was playing games for quite some time. HE took a nap and woke up just in time for BINGO. He won a watch last night. Yesterday the hospital celebrated Kwannza all the kids got Lego Airplanes/Trucks He's been working hard trying to get it together. Last night some pieces were missing and after looking all around the room , in the garbage, etc we found them in his pajamas. I guess when I put his pants on they were lying on his leg. He had another good nights sleep. Today 12/31 is the BIG DAy he will get his Stem Cells back around 2 PM. His friend Samantha sent a New Years Eve basket he had fun making noise last night. Tonight he will probably not eve feel good. I'll post after infusion Please continue to pray that he feels ok through this. HAPPY AND HEALTHY NEW YEAR TO ALL!

Sunday, December 29, 2002 at 10:30 PM (CST)

Today Michael really did not feel too well. His throat is beginning to bother him and his stomach as well. The nurse gave him morphine which kind if made him feel worse. He did watch all of the football games even watching 2 at a time in the room. He was happy to see the JETS win! He hasn't been eating or drinking anything and his counts started to drop today. The platelet donors have begun! Thanks to all who are considering making an appointment.
Also, keep the prayers going that he gets through this without too much pain and discomfort.
Thanks again!

Saturday, December 28, 2002 at 06:40 PM (CST)

Things are still holding on for Michael . Counts aren't in bad shape. Today was his last day of Chemo and now two days rest. He's been keeping busy videos, movies, games , etc. His throat is starting to hurt him a little and he has had some bouts of vomiting. He is still looking pretty good. We've started to put the lotion on his skin to prevent peeling and discoloration,. He needs to shower once a day and chenge his dressing on his temporary line in his chest,,, not his favorite thing to do., Anthony came to NY today with Grandma, Poppy and Aunt Caroline and he waved up to Michael at the window and playued some UNO with Mom and Dad in the Lobby., Frankie spent the day at Aunt Sue's,. Tuesday is the big day ,. We are truly greatful and blessed to have gotten to TRANSPLANT. Thanks to all who have sent cards, gifts etc and a SPECIAL thanks to Lynn and the girls at Tommorrows Childrens Fund at Hackensack Hospital You are the BEST!
Off to play a game with Michael as we also try to get him to eat an icepop., Check back soon
Sharon

Thursday, December 26, 2002 at 07:09 PM (CST)

today is day 4 and so far so good. Tuesday night he was a little uncomfortable at around 2 am He woke up very happy on Christmas morning and opened all his presents and got dressed in his dockers and oxford shirt. It was the cutest Frankie and Anthony were able to come up and in the room as well We had dinner in the hospital and the volunteers served the food. Lou the volunteer stayed with Michael while we ate. The snow was wonderful to watch in Michael room with a view. Not to nice to walk to RonaldMcDonald house though. They had dinner and Santa there as well There are toys toys everywhere! Michael's counts are still ok. He shaved his Mohawk today he says he looks like Kurt Angle from WWF. A photographer took his picture today for an ad for the hospital blood donor program He is still eating looking for Spaghetti O's and Olives
Game cube kept him busy today as well as the computer
He won a fish tank -fake of course at Bingo tonight
His spirits are good Lets hope they stay that way
Thank you all for your thoughts and good deeds
The blood donor # is 212 639-8177 Marion
His stem cell infusion will be on New Years Eve!

Tuesday, December 24, 2002 at 03:08 PM (CST)

Well Michael finally went into transplant yesterday. Yesterday was not so bad he got a blood transfusion before the chemo started. The child life welcomed him with a lighted tree for his room and we've started to decorate a little bit. His sense of humor is still going. Tonight is Christmas Eve and he's playing and singing Chistmas songs.
This will be the best source of information for the next 30 days. Michael will also be needing blood and platelets, if anyone can or knows someone who can donate I will post the contact info for the representative here. Her name is Marion Novack she will make the appts. May all of you have a Very Merry Christmas and pray for a speedy stay for Michael
God Bless you all!

Friday, December 13, 2002 at 06:56 PM (CST)

Michael hasn't made it into Transplant and it looks like he won't be going in before Christmas. I am happy for him that he will be able to spend Christmas at home with his brothers. We just have to hope that he doesn't catch anything else between now and then. His spirits have been pretty good. His hair is still in MOHAWK style. He got blood and platelets today and he met singer John Mayer this week in the hospital. Frankie made the PREP track team and Anthony was in the Nutcracker performance at school on Thursday. Please continue to pray that this treatment goes smoothly and he can get into doing it soon.
Happy Friday!

Saturday, December 07, 2002 at 01:06 PM (CST)

After traveling to NEw York in the snow all ready to be admitted to Transplant. We were sent home because Michael's CAT Scan showed a touch of pneumonia on his left lung. I guess things happen for a reason. He had a room assigned to him and all. For the preparation he and his dad shaved their heads into a MOHAWK. Michael still has his, dad shaved his off because of work. Michael will be on antiobiotic for the next few days and hopefully be admitted this week. Prayers are still needed for him to have an easy time in transplant.
Thanks to everyone who has offered some sort of help at this time, we truly appreciate it.

Wednesday, November 27, 2002 at 10:18 PM (CST)

We made it in and out of New York with now problems for all of the holiday traffic. Counts are looking good. Michael did need platelets today. He also had a dental appt and hearing test. On Monday he had a Bone Scan and Chest XRay. After getting such good news last Monday we are faced wit the hardest decision a parent should ever have to make. "Do we put Michael through transplant?" All of his doctors agree this is the best way to go right now. Of course we are praying that we made the right choice. They would like him to go in on 12/9 to start the Chemo and he will stay for about 30 days. Yes, he will be in for Christmas and probably New Years. Hopefully with this and Antibodies after it's the end of the road for this boy. He is still so good and cooperative. This will be the place to see all of the updates from transplant. I'm sure there will be good days and bad days. Please pray that this works out for Michael. Thanks and Happy Thanksgiving!

Monday, November 18, 2002 at 11:16 PM (CST)

After a long weekend we were blessed with wonderful news. Michael's MIBG Scan and Bone Marrow Aspirates are NO EVIDENCE OF DISEASE. Michael has endured so much in the past 3 1/2 years . He's a fighter and "Our HERO" He has not let this disease get in the way of anything for him. He played sports when he could, went to school after MIBG therapy and runs around like a maniac. He is anxious to get back to his class. He still has some more treatment to do. The Baylor Vaccine in Texas is probably our next option. But NO DISEASE is the best early Christmas Present we could all wish for. Thank you all family and friends who have been praying and thinking of him. Keep it up it must be working! Counts are still low but coming up slow. We'll have more to report on Thursday as to when we will start next treatment .

Saturday, November 16, 2002 at 06:59 PM (CST)

We ended the week on a good note from the doctors. They held off on giving back the Stem Cells again. We had a short visit and headed home. We will wait all weekend for results. Michael is pretty much feeling OK. His 3rd grade teacher is going to be his home tutor starting next week. He really wants to go back to school. Hopefully next weeks posts will be full of good news!
Thanks everyone for your support!

Thursday, November 14, 2002 at 09:38 PM (CST)

After a few early days in the hospital week all scans are finally completed. We now just wait for results. Michael did not get his Stem Cells back as planned for today because he moved another notch to .2 It's good he didn't because we may have a second chance to do MIBG in CHOP. On the other hand he is fighting an infection without much help. He's bee feeling pretty good I guess. We will be back in NY again tommorrow for blood check. We'll keep ya up to date as far as results.

Tuesday, November 12, 2002 at 04:04 PM (CST)

We went to clinic at 8:00am this morning to learn that Michael would be getting his stem cells back tommorrow morning. His counts were checked and CT Scan was done and we then learned that his ANC was at .01. That was a real good sign from Dr. Kushners point of view. He said it could mean the marrow is starting to come back on its own. He has his bone marrow checked today as well. Tommorrow will be the test. If the count stays at .01 he WILL NOT get his Stem Cells back. Say a prayer we can hold off a little longer. While in the recovery room Michael was starting to wake up a little bit and to his suprise a movie star was staring at him over the bedside. It was Michael J. Fox. He cam to visit the Pediatric Floor What a gentleman! He took a picture with Michael in the recovery room and Anthony got one in the playroom.
Check back this week for the update!

Saturday, November 09, 2002 at 08:34 PM (CST)

We were proud today to do a fundraiser for National Childhood Cancer Foundation. We had a table at the Craft show at St. Mary Star of the SEa and sold the Christmas Cards created by Michael and children from all over the country. I guess we sold about 60 boxes and raised $600 fpr NCCF. I met many nice people and some even shared their own stories. Thanks to all who showed their support!

Friday, November 08, 2002 at 03:20 PM (CST)

Michael's trip to clinic today was short and sweet. Just a bag of platelets to hold him for the weekend. His bruises seem to be much better. THe white count moved again to .7 The ANC is still 0 and needs to be at least .3 for him to return to school. Next week he will do all of his scans and check the bone marrow. We will keep you posted on results. HAPPY FRIDAY!

Monday, November 04, 2002 at 07:18 PM (CST)

After a super long weekend we are finally home! Trick Or Treating started our weekend off, Friday was Aunt Sue and Uncle Jon's wedding, boy did we have a good time. Saturday Michael ran the Ronald McDonald House Kids Charity Run and raised 1,270.00 Thanks to Midtown School and P.S.#30 and the Barnegat Gang. He finished the race with the help of the Yonkers Fireman and Ronald Mc Donald. He was greeted at the finish line by Greta Weitz, 9 time NYC marathon Runner. On Sunday we were up to cheer on Dr. Kushner and Fred's Team- a team that runs for Pediatric Cancer. They raised close to 1 million dollars. Way to GO! It was an amazing thing to watch. Michael helped the RMDH Team hand out Gatorade and water and Oranges and choclate to the runners. They were very appreciative. At 6:00 we all went to the Plaza hotel for dinner with the runners. It was very special to be a part of their accomplishments. Michael, Anthony and myself stayed in NY so we could get an early start in clinic. Michael needed blood and platelets today. He was feeling tired. He got his Dad's platelets and Mrs. Walters blood- Thanks!!!!!!
We also got some good news that his Urine Markers went down considerably. We will be doing scans the end of the week or the beginning of next week which will tell us a whole lot more. That news was the start of something good hopefully! So keep those prayers going !

Thursday, October 31, 2002 at 09:25 PM (CST)

Happy Halloween! The boys started their day off dressing up to go to the hospital and Frankie dressed a Goofy to go to school. There was a GREAT party in the hospital and the staff dressed. Our special "Child Life" staff were all Disney characters. There was a magician, pumpkin painting, face painting and lots of candy. Several other departments were sent up for TRICK OR TREATERS TOO! During all the fun he got a bag of platelets to hold me over for the weekend. Michael was able to go trickk or treating at home a little bit. It got really damp.
Michael is all excited about Aunt Sue's wedding tommorrow. We'll have lots to report about from this weekend. The Ronald Mc Donald Race , NYC Marathon and the Dinner at the Plaza Hotel in honor of Fred's Team running forPediatrics for MSKCC.
P>S> Michael's Lifesaver pumpkin won Most Original in the School contest.
Midtown Community School Staff sponsored Michael in the RMDH Kids Race on Sunday with a generous donation
as well as P.S.#30- Grandma's Work Thanks to all who participated for this cause. It has been our home away from home at times.

Monday, October 28, 2002 at 08:56 PM (CST)

It's almost 5 weeks since MIBG and counts are still low. Michael was transfused platelets today. He cam home to a nice suprise from school he was "Student of the Month for his class. His teacher sent him the Button and Pencil that go with the honors. He also made a Roll of Life Savers out of baby pumpkins for the contest at school. Mrs Mercun the principal was very impressed Way to go Michael!
He's getting all ready for Halloween and Aunt Sue's wedding and the RMDH Relay Race This is a big week. Please say a prayer the counts hold up!

Wednesday, October 23, 2002 at 10:28 PM (CDT)

Happy Wednesday! Today was Slime day in the playroom. Michael made blue slime YUCK! He did need platelets today. His counts are moving so slow. He did go to .5 White. The playroom gave him tickets to the NY Ranger game tonight- he sat next to Brian Leetch's parents. I was so proud of him for keeping his mask on during the game. Doctor's Orders! Thanks ChildLife Dept!
He will return to clinic on Friday probably needing blood.
Enough to juice him up for the weekend!

Monday, October 21, 2002 at 08:49 PM (CDT)

Today was not so bad at the hospital after all. Well there was a little confusion about the fingerstick. Michael should have gotten a fingerstick in Urgent care because he has a cold and couldn't go to the Pediatric Floor. They did not want to do it there and wanted to access his Mediport. He told the nurse "I don't want my port accessed for a blood count" He was right. So they brought us upstairs to the Pediatric floor and put him in an isolation room. His counts went up to .4 today with still no ANC. He'll go back on Wednesday and probably get platelets. Speaking of that THANK YOU to everyone who has been so generous in Direct Donations. Daddy, Poppy R, Bobby S. , Coach Charlie, Coah Ray, Mrs. Walters,& Eileen. Your arms are very special to Michael. Also Michael'spicture is on the Ronald McDonald House New York Website if anyone would like to look at it. Click on Photos. If all goes well and he feels good he will run in the Ronald race on 11/2 all benefits will proceed the house directly. Well it's 10 pm and he is coloring spiderman!

Friday, October 18, 2002 at 04:12 PM (CDT)

Today is Friday! Michael is feeling a little bit better, somewhat tired. His counts were still low today but holding. After the transfusions on Wednesday his Red Blood was 10.1 and Platelets 59. His nose is runny and he has a little cough so they swabbed him and sent in to the lab to check to see if it's viral/bacterial. He will be isolated on Monday when we go so other patients are not at risk for catching anything if he does have something. Being the baseball fan that he is he'll still watch the series even though the Yankess aren't in it! Have a good Weekend and pray for those counts to come up!

Wednesday, October 16, 2002 at 09:04 PM (CDT)

Started the day off in the pouring rain off to the hospital. Michael was not feeling all that great. He had a headache and looked very pale. Sniffles are also following him. He had a platelet transfusion and blood transfusion today. Today was his Explorer's Group in the playroom By the time we left the hospital he was feeling a little bit better. White counts are on their way out the door please pray that we can hold tight!

Tuesday, October 15, 2002 at 09:02 AM (CDT)

Today is three weeks since MIBG injection and thank God Michael has been feeling rather well. He's need some transfusions, but he picks himself up and goes again. Somedays he looks tired but is running and playing. He did go to school today. He's been going back and forth to NY 3x a week. He and Anthony are going to be Policemen for Halloween and Frankie is waiting for the first school dance. On Sunday we attended a wonderful party/reunion for Neuroblastoma in NY @ MSKCC. It was great to see many of the patients and familes we did treatment with. The Doctors all said wonderful things about the KIDS. Dr. Cheung sang. It was alot of fun. Please pary that counts hold on until be do scans again the first week of november Thanks!!!

Monday, October 07, 2002 at 09:00 PM (CDT)

We checked out OK today at the hospital Michael's counts were pretty good today, even though he had shots to boost them over the weekend. His white count was 4.0, Hemoglobin 10.2, and Platelets 46 Michael is hoping that he gets his dad's platelets on Wednesday. Tommorrow he is going to the Pumpkin farm with school. Anthony and mom will go too! Keep praying for good counts!

Sunday, October 06, 2002 at 09:09 PM (CDT)

After a real long day in clinic on Friday getting blood and platelets Michael was able to enjoy the weekend. I guess t pumped him up. On Friday night he went to Cub Scouts, something new for him and not sports related. On Saturday he rode his bike a bit and of course had a JIMMY'S Hotdog for lunch. And Saturday afternoon put an end to baseball for us and the Yankees. Oh well Better luck next time guys! Today he went to the park crabbing. They were able to catch one. Michael and Anthony were very excited. Frankie was refereeing the little kids soccer game . Michael is learning his times tables and had a book report to do as well over the weekend. Tommorrow he's back in clinic in the morning and hopefully to school in the afternoon. Must be that Midtown Magic that he's so eager to go to! Please pray for an easy week and not too many transfusions. He's getting shots for his white count and hopefully that will hold for a bit. LETS GO JETS!

Wednesday, October 02, 2002 at 09:34 PM (CDT)

Our visit to clinic today was pretty quick. Weight, counts and check up. Counts are beginning to drop. Probably he will begin to need transfusions. The stomach issue might be from the iodine he is taking and Dr. Cheung gave him something for that today. He did go to school for the rest of the day and plans to go tommorrow too! We made a playground stop after school too! As long as he's feeling good that's what counts! Oh yea- the green olives are still going down even at 9:00 at night!!!!!!!

Friday, September 27, 2002 at 09:44 PM (CDT)

Three days after the injection he made it out. It was a close call. This morning the meter read 9.4 they said they woudl come back later. I changed the sheets and pillow case and put fresh clothes on Michael Well that number changed to between 5 and 6.2 Dr. Maris came over to see us off and give us follow up instructions. The next couple of weeks we'll have to watch the counts. Transfusions might be necessary and possibly the stem cell rescue. Thank you all who sent cards, e-mail, phone calls etc to check on us. It really means alot. They said he could go back to school on Tuesday. We'll take it day by day. HE had some really nice nurses in CHOP. Well off to bed we need to get up at 8am 6am and 8am for medicine

Tuesday, September 24, 2002 at 06:36 AM (CDT)

Today is the big day. I think Michael is already bored and would like to go home. Yesterday was a long day for him. The playroom is geared more toward very little kids and there was no child life available when we got here. We didn't get a nintendo game until around 8:00 thanks to a dad who's son was leaving today. The facility is beautiful but there is nothing like his friends back at MSKCC. He will be going down shortly to have the cathether put in and the MIBG injection is being flown in this morning from either Michigan or Minnesota . Itthen needs to be defrosted and checked that it is suitable to give him. I'll check in again later today after the infusion. Keep those prayers going Thanks!

Sunday, September 22, 2002 at 08:10 PM (CDT)

Today we arrived at Ronald McDonald House with anticipation to begin MIBG therapy this week. Michael was pretty excited that his very BEST friends came to visit him today before we left Emily and Samantha. Thanks girls you are the greatest! We checked into RMDH and of Course Michael was hungry so we adventured out for a PHILLY Cheesesteak. We found GENOS and it wasn't as good as the one we had last time at Abners. It's around 9:00 p.m. and it's very quiet here but Michael and mom found the game/computer room and Dad is watching his favorite team play football. Tommorrow we will go to the outpatient clinic and be admitted from there. Thanks to all who sent their prayers and wishes and called to wish us luck. I have a good feeling about this week and I think Michael does too! So keep those prayers going and we'll check in to let you all know whats going on in PHILLY

Thursday, September 12, 2002 at 09:51 PM (CDT)

After two rounds of chemo this summer Irinotecan and Oral VP16 we did not get good MIBG results this week. It shows more uptake than the last one done on 6/28/02. The uptake has increased in the spine, pelvic and lower legs. This news is just devastating and heartbreaking to all of us. With the help of God, MIBG therapy at CHOP will give some relief. Oter than that Michael scored 6 points out of 14 at Saturday's baskeball game and lost his first soccer game of the season. Tonight we went to the Carnival. Last Friday he had another great experience with the New York Yankees. WE were given tickets from the hospital and he watched batting practice on the field and in the dugout and paid a visit to his friend Derek. Thanks to his friend Bill he got a few minutes in the clubhouse. Our seats were behind homeplate. Anthony was able to enjoy the fun too! Frankie didn't want to come. Saturday we went to Point Pleasant and the kids loved the rides. Monday was back to school. Michael had a good week. We have a busy weekend too! Anthony's birthday party on Saturday and basketball game too! Go KNICKS!!!!!!

Monday, September 02, 2002 at 10:22 PM (CDT)

Summer is almost over and school about to begin. Michael really didn't have to much of a summer really. He spent 2 weeks inpatient in August with a bacterial infection in which his Broviac needed to be taken out. He was supposed to have it taken out to put in a mediport so he could swim. We did IV antibiotics at home for a few days and then went on Oral chemo for 10 days. The counts were begining to drop a little and we really needed to get away for a few days. They stopped the oral chemo. Michael was able to swim for a few days and then we went to Wildwood and he had a blast! The pool and the beach were great! We then went to Hershey Park for a feew days and he rode the roller coasters galore! He will go back to school to begin 3rd grade for a few weeks before going to CHOP for MIBG therapy. This week he does a complete workup of scans. Please pray that we see some more improvement . Thanks as always for your support!

Wednesday, August 14, 2002 at 11:04 PM (CDT)

Summer hasn't been going the way it was planned for Michael. We finally convinced the doctors to pull his tube out and put in a mediport so he could swim. He was so excited. Most of his friends have pools so the invitations are always open. Lucky him! On 8/1 he really wasn't feeling well and we were planning to check in at RMDH anyway to have the port put in in the morning. I checked his temp and he was warm and needed to go to Urgent Care. The fever ran about 2 hours and broke than went up during the night. The bottom line was Dr. LaQuaglia stilll wanted to take it out incase of infection. Good thing he did, as we were on our way out the door the resident Dr. cam e in and said he need to stay. His blood cultures tested positive for bacteria. (Gram NEgative) Needless to say he spent the next 8 days in the hospital. We took him home on 8/10 with IV antibiotics. It wasn't so bad doing it at home. On Monday he was scheduled for Chemo and counts weren't up high enough Dr. Kushner thought doingOral Chemo at home would be ok. So that's where we are now. He is very bored and hot. We try to do fun things but his fun thing would be to swim right now. Hopefully he'll get a chance before the end of the summer. Please check in again I will try to update more frequently. Sharon

Sunday, June 09, 2002 at 02:47 PM (CDT)

Today is day 18 for Michael inpatient. He turned 8 yesterday and had the best day possible even though he was in the hospital. Family came to visit and he even had a funny suprise guest, Choco the Clown. His count is .4 and holding. He was able to spend the weekend with Frankie and Anthony being able to visit and stay in his room a little late. He was moved up to the 14th floor because of construction. I like it because we're in a private room but Michael has to commute up and down to the playroom, He's hoping to get out of here by the middle of the week. Wednesday his soccer team gets their 1st place trophy, which Michael scored the winning goal to win the season.We'll know more about his next course of treatment once he gets home and recouperates a bit and is rescanned. Birthday wishes were sent from all. He truly was very happy!!!!!!!!!!!

Saturday, June 01, 2002 at 02:23 PM (CDT)

Today is day 10 that Michael is back in the hospital with no white counts. He started with a fever for a few hours and now we're just waiting for some counts. He is at .01 today. next Saturday is his birthday and he is very bummed if he spends it in the hospital.He's been maintaining his weight and his spirits are good. We'll check back in a few days with an updated post.

Sunday, May 12, 2002 at 10:06 PM (CDT)

Since our last journal post many things have changed. On March 26, 2002 Michael relapsed. Saddened and disappointed we began our fight against this terrible disease again Michael began complaining about pain in his leg again and I called MSKCC immediaely. I took him in and an Xray and blood work was done. The XRay showed nothing the bllod work showed platelets at 55 Bone marrow was taken and on 3/26 we were told our son had extensive disease in the marrow and a lesion on he leg. We had a Broviac put in two days later and began chemo righ away. We went inpatient on Friday to get it started and spent Easter at RonaldMcDonald House. After being home a few days Michael ran a 103 fever and we needed to get him back to the hospital. He was admitted and stayed in for 18 days with no white count or ANC. Beleive it or not he was a pretty happy camper for being in the hospital. He ate Mac and Cheese and Ramen Noodles and Green Olives almost every day. He had free roam of the playroom from 10 am to 9 pm every day. We tried shots to bring up the count and nothing really worked. He did earn a new Nickname " Superman" thanks to Dr. Heller. His hair fell out so we shaved the rest off and he's become king of bandanas. He tends to favor the Yankee one. His baseball teams have been very supportive. He's been to most of the games and cheered the team on in full uniform. Last weekend he went to the Yankees game and had a chat with his friend Derek Jeter. They were all sooooo nice to all of us. On Sunday he made his First Holy Communion , in all white he looked handsome. He did a wonderful job. His classmates have been so good with cards and a video and the teachers, staff and PTO could not be more supportive of Michael Thanks Midtown! With an OK from Dr. Kushner Michael played a few innings of baseball his weekend. He was so happy He really has alot of energy for a little kid. Well tommorrow hopefully we'll have more results and figure out a plan to beat this disease. I will try to update more frequenly and change the pictures too! This entry begins Part 2 of Michael 's journey Please pray that this will be an easy road for him. Thanks for all your support!

Thursday, November 29, 2001 at 06:38 AM (CST)

We haven't posted a new entry in such a long time. I guess that show how back to normal routine keeps you busy. Michael is doing well and having a great time in school and on the sports field. Michael got a clean bill of health again from MSKCC and will go back in January. At that time he will be 3 years since diagnosis. He will begin to see an endocronologist for long term following. He started September playing soccer and basketball. As for Soccer his team was undefeated for the season and won 1st place division champs with Michael scoring the winning goal in overtime. Basketball season was great too! His team came in 2nd place- playing really hard in the Championship game. He's pretty much waiting for Christmas and all the fun things that come with it. His brothers are doing well also. Frankie played travel Soccer and is preparing for 8th grade graduation. Anthony loves nursery school and Kindermusik class on Fridays! We'll post again soon How could I forget this Michael designed 2 Christmas cards this year for the Justin Scott Foster Foundation. Check them out at JSFFOUNDATION.com They benefit Neuroblastoma and Leukemia Research and Families in need. Thank You!

Saturday, March 10, 2001 at 10:56 AM (CST)

I am proud to write that on February 18, 2001 Michael officially completed his treatment. He took his last dose of accutane in New York. We were ther doing routine scans. Bone Marrow and MIBG results are both negative. We have been so blessed
with Miracles. Michael has been warming up for the Little League season. A friend of our cousin met Derek Jeter at Spring Training and he asked him about Michael. Derek asked how he was doing. Michael was thrilled! He is off to baseball camp. Look out Yankees here comes the next Derek Jeter
Thanks for all your support we couldn't have made it without it!

Friday, February 02, 2001 at 09:32 AM (CST)

Happy Groundhog Day! Michael has been home all week with a virus/cold. Last week his blood sugar was low and he was complaining he was really tired. On Superbowl Sunday he slept for about 2 hours and wasn't he spunky self. We left the Superbowl party at halftime. On Monday he had a fever and was hooked up to IV at Hackensack for a few hours. Almost all of his class was absent this week. His teacher picked him to be STUDENT of the MONTH , he is so excited. On January 16th he rode the Zamboni at the Ranger/Flyer game at Madison Square Garden. Lynn Hoffman at Tommorrows Childrens set this up for us, Michael has always wanted to do this. We were scheduled to start the last round of Accutane this past week but it's being delayed a week until he's feeling better. So he will officially end treatment on February 18th. He will be goin to NY that week for Bone Marrow Aspirations and MIBG Scan probably the last of the scans he'll have too! Please pray that these scans are negative. Frankie will turn 13 tommorrow 2/3 and Anthony is scheduled to have surgery on his eye on 2/13. Have a wonderful weekend!

Sunday, December 17, 2000 at 08:13 AM (CST)

After spending 3 days in New York and Michael seeing some of his favorite freinds like Alexa and Chris and sharing in the Holiday spirit with a party sponsored by Project Feel Good at the RMDH and going to the Rangers game on Wednesday night, we are very happy to say that Michael's results show NO evidence of Neuroblastoma. This is such wonderful news for us. It's the best Christmas present for our whole family. We're finishing round 4 of Accutane today and have 2 more to go. Dr. Cheung would like to meet with us to discuss "OFF TREATMENT" care. That sounds so scary but yet we can take a deep breath and be thankful. SO from the bottom of our hearts we wish you all a MERRY CHRISTMAS and HAPPY NEW YEAR! WE LOVE YOU ALL!!!!!!!

Tuesday, December 05, 2000 at 07:37 AM (CST)

It's that time again. Time to go to New York for 3 month work up scans. Please pray all goes well for Michael. Since we last posted he has been doing well. Last week he won a 1st place trophy in the Punt Pass and Kick contest here in Bayonne. This past Sunday he had a wonderful time at the Tommorrow's Childrens Christmas party, he couldn't go last year because he was inpatient . He has also received a SUPER report card! We are very proud of him. We started round 4 of Accutane. We have 6 to do. We hope to do some fun things in NY for the 3 days we'll be there one is seing the tree at Rockerfeller Center and eating at Toomashi , Michael's favorite chinese resturant in NY. We'll post our results ASAP. Happy Holidays to all!!!!

Monday, October 02, 2000 at 10:39 PM (CDT)

Hello All! I know it's been awhile since we've posted but. .. We are very busy. I think we last left off with the Boston trip. The New York Yankees were the best thing that ever happened to Michael that weekend. We all flew up to Boston on Friday and thanks to some great people mommy and Frankie were able to see the games all weekend. I think to most special thing was how the Yankees treated Michael. Derek Jeter took him under his wing and held tight all weekend. Michael ate with them, trained with them, stretched with them and even had free use of the Powerade jug. He followed them all around the locker room and rode the bus back and forth from the hotel to the stadium with them. Th players joked with him and had a grand ol time. Reporters interviewed Dad, and Michael made the NY Post with a Picture of him and Derek. It's an amazing world we live in. The Yankees won all 3 games that weekend. GO YANKS!!!!!!! On Sunday it was time to go and Michael and Dad flew home on the Yankees private plane. How exciting! Michael has memories that will last him a lifetime.Thanks to a special person we don't know who you are but you do have a heart of gold. Who knows maybe he'll make the Big Leagues one day. Well it was back to reality on Monday when Michael returned to school. Mom misses him all day and he misses mom and Anthony. The adjustment is very hard. He's complained of headaches due to the Accutane that he is taking now oraly at home. But he's been busy playing soccer, basketball and flag football.
On Sunday the 24th our family was fortunate enough to go to Maine, to CAMP Sunshine. A state we've never been to We drove 6 hours to get there and it was worth every minute. The boys had a wonderful time and mom and dad met so many wonderful families. The camp is run by volunteers who are by far the BEST!!!!!!!! They were put into age groups and did sports, crafts, hikes , bonfires, etc.. The food was even good. It was a place of peace and rest. To look at night and see the stars as clear and close as they were was so beautiful. Michael cried on Thursday that he didn't want t come home. It was a place of freedom and independence. Thanks Camp Sunshine for the wonderful memories.And today Michael scored his first touchdown at flag football. If you could only see him run with that ball. We're working on updating the pictures so check back soon. P>S> We'd like to congratulate Aunt Sue and Jon on their engagement!!!!! All the boys are worried about is if they can ride in the limo!!!!!
Thanks for taking the time to check in on us. We love you all and couldnt have done it without our family and friends!!!!!!

Saturday, September 02, 2000 at 09:12 PM (CDT)

Michael has been enjoying his time at home not having to have antibody treatment. All of his scans have come back negative. Thank God and again we are greatful. Michael lost is first tooth on Aug 30th and I do mean LOST it...he swallowed it! OOPS He also crashed on his bike on Friday and did some pretty bad damage to his knee and forehead. All of mommy and daddy's medical experience helped heal his wounds LOL Michael starts school on Wednesday off to first grade and Frankie goes to seventh. On Friday it's of to Boston to watch the Yankees whip the Red Sox. It should be a great weekend. Check back soon to see some pictures and story of what it was like to be behind the scene with the NEW YORK YANKEES!!!!! Thanks for supporting us again through this time of treatment!

Saturday, September 02, 2000 at 08:59 PM (CDT)

We've had a really nice time not having to go for Antibody treatment. All Michael's scans are negative again. Thank God! He'll begin a new part of treatment on 9/11. He'll be taking Accutane at home for 6 months. This week has been a big week for Michael- on Aug 30th he lost his first tooth and I do mean LOST he actually swallowed it. The tootfairy came . And on Friday he took his first fall off of his bike and sure did a bad job on his face. We really had a hard time cleaning the wounds. School starts on Wednesday the 6th , Michael will go to first grade and Frankie will be in seventh. And on Friday the 8th we take off to Boston to watch the Yankees whip the Red Sox. Also to see the dream of a lifetime, Michael will be a batboy. It should be a weekend to remember. Check back soon to see some updated pictures and complete story of behind the scenes at Fenway Park! Thanks again for supporting us during this time!!

Friday, August 04, 2000 at 09:09 PM (CDT)

After eighteen months and 14 days of being diagnosed with Cancer and going through treatment like a trooper, Michael has finally gotten a "HAMA". This is the immune we've been talking about. We were in Hershey Park PA on 8/2/00 and called home to check our messages and sure enough Michaels nurse Jenny called us with this wonderful news. It's an end to painful days for him. He still has one more course of action to finish and that will be to complete a 24 week cycle of a drug called Accutane and upon completion of that his treatment will be officially over. We are so greatful to all of our family and friends who have prayed for him ...keep on doing it! Michael will start 1st grade in St. Mary's in September. He will still go to New York 8/7-8/11 for a complete scan workup so pray all scans are negative.
Michael and Anthony are getting bunk beds tommorrow so he is soooooo happy he is old enough now for a top bunk. Have a great weekend!!!!!!

Sunday, June 18, 2000 at 08:20 PM (CDT)

Michael celebrated his 6th birthday on June 8th. We had a family party that night! On Friday when we went for our count check at Hackensack he had a 102 temperature, something he hasn't had in months. We were deciding what to do because his party at Fun Time USA was on Saturday and on Sunday he was going to the Yankee game with his Dad to accept a Check on the field for the Tommorrows Childrens Fund. We decided to reschedule the party for June 30. Michael went to the game and had a "Ball". He sat in the dugout and shook hands with Paul O'Neill, Joe Torre, Scott Brosius, Bernie Williams and his favorite Derek Jeter. What a night!!!!!!
He's finishing up his last day of school tommorrow and moving on to first grade. WOW! On Wednesday we're heading to the Jersey Shore to Point Pleasant for five days at the Sunshine House, a place for families of children with cancer. Frankie is moving up to 7th grade and Anthony turned 21 months today! Happy Father's Day to all! Michael will return to New York on July 10 for another round of Antibodies. Please keep praying for a HAMA- an end to treatment.

Tuesday, June 06, 2000 at 07:37 PM (CDT)

Just to fill you in since our last update. Michael's "WISH" finally came true. We, The Romano's went to DISNEY May 9-May 14. It was the BEST time ever. We stayed at Give Kids the World Village and we were sponsored by The Marty Lyons Foundation. We were able to see all the Disney Parks and spend a day at Typhoon Lagoon, Michael's favorite park. The characters were Fantastic and treated all of us very special. We flew Continental Airlines and had two easy flights. I guess you could say it was great to be in Florida for Mother's Day. We got in at 1:00 a.m and had to be in New York for treatment in the Morning. We had a busy week with Antibodies and 3 month scan workup. Antibodies were a little tough again but all scans are NEGATIVE!! Thank God for that!!! Michael returned to school after the week of treatment and graduted on Friday June 2 . We are so proud of him. He even had a line to say! On Saturday we went to the Tommorrows Childrens Fund picnic sponsored by Mr and mrs Jurist it's a day you can't say enough about. Games, rides, food, swimming, tennis, icecream etc.. all at their home. We had blood drawn on Monday at MSKCC for Michael's HAMA test. Please pray he has one this time. That would be the best birthday present he could ever get! By the way he will be "6" on June 8. Way to go Michael!!!!!! On Wednesday night Michael and Frankie will both receive Soccer trophies.Frankie's team clinched First Place. I've written a complete journal of our Disney trip that I will add shortly. Thanks again for your support in our battle, we love you all!!!!!!!

Wednesday, May 03, 2000 at 10:14 PM (CDT)

Just a note to let you all know that after almost 16 months of treatment MICHAEL and family are going to DISNEY on Tuesday May 9th for 6 days thanks to Marty Lyons Foundation. We will stay at Give Kids the World Village and EVERYTHINg is included. Michael also played his first Baseball game last week and got 2 hits and in his soccer game he scored a goal- (for the other team) oops!!!!!!!
He will need another week of Antibodies when we come back on May 15-May 19. We will test again after that to see if we are HAMA positive and finished with treatment. Look for our post when we return from Disney to see the Magic is instilled in all of US.

P>S> Michael tried on his new bathing suit today and if you could see the twinkle in his eyes, he was so HAPPY he will be swimming next week

Frankie is looking foward to meeting Chip and Dale- his favorite characters

Anthony- we hope won't be afraid of the characters!!!!

Friday, April 14, 2000 at 08:33 AM (CDT)

On Wednesday April 12, 2000 Michael finally had is Broviac (tubie) removed. It was a really exciting day for him. It was a part of him for 15 months He asked to keep it and Jill the nurse put it in a baggie for him.We had a small cake at the clinic and Dorothy, Michael's Child Life Specialist helped put together a small party in the art room. We replaced his tubie with a swimming tube. We couldn't celebrate that night because we went to a fundraiser for Tommorrow's Childrens Fund. We did have a little party on Thursday with pizza and cake . Michael's grandparents ,aunts and his friend EMILY joined in the celebration along with mommy, daddy, Frankie and Anthony we had fun. We start on Monday with fingersticks for count checks and he is usually pretty good about that. Thanks again for keeping up on Michael's progress we love you all!!!!

Friday, April 07, 2000 at 11:01 PM (CDT)

Michael arrived home tonight from his two week antibody treatment. He had a tough 7 days and then we changed one of his medications, which made him a little less irritable and emotional. We thought we would get home early today but he needed a blood transfusion. We won't have to return to New York until the 3rd week of May. Inbetween we plan to have fun and enjoy the time off. On Thursday night Michael and mom went to the NY Ranger game and had 4th row seats from the ice, they were donated to Ronald McDonald House. The biggest news of the week is that on Wednesday 4/12 after 15 months we are getting his "tubie" Broviac taken out.We still may have some more treatments pending on his blod test to be taken on 4/24. Right now we're just taking one day at a time. He will return to school on Monday. And he has his first soccer game next Saturday. GO MICHAEL!!!!!! Frankie has his first baseball game tommorrow WIN WIN We will keep you updated as far as treatment and fun goes. But for now thank you all for always remembering us in your prayers.

Saturday, April 01, 2000 at 08:55 AM (CST)

After not posting since January Michael has done very well since Bone Marrow Reinfusion. He spent most of January and February at Hackensack TCI's clinic having his counts checked and getting transfusions, February 14,15,16 we went back to Memorial Sloan Kettering and had a complete workup- scans and bone marrow aspirates and all are NEGATIVE. We also did two weeks of Antibodies in February . And that magic day came where Michael returned to school. Horray! He is going to Kindergarten at Midtown with his big brother Frankie. We just did another week of antibodies in New York and have to go back next week to do another. This could be the last treatment if he develops a HAMA. Michael has done lots of funs things now that he is feeling better. He went to the circus, and saw Arthur live at Radio City with his little friend Ally from Georgia, she is a Neuroblastoma patient also. He also went to Lauren's birthday party last Saturday and had a blast. Today is his first baseball practice. He is so excited!!! And yes, we're finally going to Disney. Hopefully if all plans follow through we'll be going on May 6th. We have to draw blood on April 24 and Michael will probably get his Broviac taken out. We think this is the best thing for him then he will be able to swim. We also have to say goodbye to our Social Worker at Hackensack, Emy who will be retiring this week. She has been so helpful this past year and we wish her all the best and will miss her. We've added new pictures to the website so feel free to sign the guestbook and see our smiling faces. Sorry we haven't been able to update in awhile but our lives have been busy and crazy! Thanks for all your prayers and for thinking of us! We love you all!!

Thursday, January 13, 2000 at 01:50 PM (CST)

Michael received his bone marrow back on December 21,1999 and was able to go home on Thursday before Christmas Eve. He was so excited to be home and was even suprised by a Santa Claus visit while he was awake. His counts have been on the low side and we've been giving him shots to boost them. He has had several blood and platelet transfusions since the hot antibodies. On Wednesday 1/12/99 he reached the 50 pound mark. He was 59 before diagnosis, s o we're getting there. It will be one year next week since he was diagnosed and he has been so brave and courageous. He is scheduled to be back in NY maybe the end of January for more antibodies . We'll keep you posted. Thanks and Have a Happy and Healthy New Year!!!!!!!!!!!!!!!!!!!!!

Sunday, December 05, 1999 at 10:29 PM (CST)

Michael arrived in the Big Apple, Sunday November 28th and was admitted to MSKCC to begin HOT antibodies on Monday November 29th. The treatments themselves weren't so bad but the drugs make him a little emotional and grouchy-he's entitled. We should have finished the treatment on Friday but the Nuclear Medicine department ran out of radiation so we have to make up half a treatment on Monday Dec 6th. We tried to really keep him busy this week. Although it was very hard not being able to hold him close or kiss I think both Mom and Dad stole a few pecks on the cheek. How could we resist. Michael was behind a small shield on the bed and only allowed out to use the bathroom. His room is very much decorated for the holidays, Christmas Tree ,fireplace and some train banners that were sent from Midtown Community School where he should be attending Kindergarten. Dad has slept there everynight and Mom has gone back to Ronald McDonald House and arriving bright and early in the morning. We have had lots of visitors and blood and platelet donors. The room had a pretty nice view of 68th street. Mom is home tonight because little brother Anthony was running a temp since Friday. "I miss you Michael" Mommy took Frankie to a wonderful Christmas party sponsored by the Tommorrow's Children Fund at Hackensack Hospital we both wished Michael was able to be there. And on Saturday we had a birthday party in the room for Dad He was how old???? The plans are to leave the hospital on possibly Tuesday, go to RMDH and have his bone marrow reinfused on December 21st. We're going to see if we can go home inbetween. So to those who have checked the post Thank You We'll write again shortly. PS Don't forget to check the History if this is your first time visiting.

Monday, October 18, 1999 at 10:09 PM (CDT)

Welcome to the webpage of Friends for Michael. This is a page created for Michael R, of Bayonne NJ. Michael was diagnosed with Neuroblastoma, a cancer of the nerve cells on January 19,1999. He has had 2 surgeries and 6 rounds of chemotherapy and is presently doing the N7 protocol at Memorial Sloan Kettring in New York City. Michael has 2 brothers, Frankie,11 and Anthony 13 months. He LOVES the New York Yankees, soccer and playing baseball with his dad. Michael is presently in remission. Michael also is a patient at Hackensack University Med Center, The Tommmorrow's Childrens Institute for children with Cancer and Blood Disorders. We will be updating this page with new pictures and Michaels treatment updates every so often. So please feel free to check back and pass it on to a friends. Thanks for your support. P>S> The name Friends for Michael began in June, 1999 with a bunch of GREAT friends putting together a fundraiser for Michael and that was the name they used. So we'd like to use that name in their Honor

Tuesday, September 21, 1999 at 12:10 PM (CDT)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----