Friday, December 29, 2006 5:00 PM CST

Dear Everyone,

Yes, it's crazy me again, this time writing to you from somewhere between St. Marten's and Port Canaveral, Florida. We are cruising along this big, blue beautiful ocean on our way home. We have been extremely lucky to have continued hot, sunny weather. Tonight is a formal night and we will be having lobster. There is just non stop eating on this cruise ship and well I have been eating alot and enjoying different drinks like my favorite margarita's, guava-berry colada's, and mudslides. There are also lots of show here on the ship. We saw an international ice-skating show last night. It was amazing. Can you believe an ice-skating rink on a cruise ship! My favorite island was St. Marten's. It was beautiful with turquoise beaches and lots of shopping. God really out did himself when he created the Caribbean.

We have been all been relaxing and trying to enjoy ourselves. Andrew and Jason are doing great. Jay and I are kind of lost without our Timmy. Our last big vacation over two years ago was a cruise and well, everything reminds us of Timmy. I look at all the families and I see little boys that remind me of Timmy. I wonder what would Timmy have been doing, what would Timmy have looked like at almost 11 years old and healthy....I have been doing my share of crying. I sometimes feel as if my heart is truly broken and I really do feel pain from it. Going away for Christmas was absolutely the right decision. Having so much time to think on this cruise has been difficult. Do people really survive the loss of someone so important, so loved and so much a part of themselves...Like I said to much time to think.

I hope everyone had a wonderful Christmas with their families. I have lots of pictures and hope to put together a slideshow soon after we get back. I faced my fear head on and had a family portrait done. Our first without Timmy. Big Ughh..

Sending everyone love and thanks for continuing to be there for me.

With Love & Missing Timmy,
Susan

Tuesday, December 26, 2006 3:03 PM CST

Hello from somewhere between the Bahamas and St. Thomas. I told you all I wouldn't be able to stay away from Timmy's website even while on vacation! I must type fast here. The Royal Caribbean internet costs 50 cents a minute and it is painfully slow!!

The Mariner of the Sea's is the most beautiful ship. There are over 3,500 passengers on board with over 1,000 being children. The weather here has been gorgeous. It has been sunny and in the 80's every day. The ship is decorated beautifully for Christmas and is festive, but not overly festive. Jay, Jason, Andrew and I are enjoying our family time together. We spent Christmas Day on CocoCay in the Bahamas working on our tans. Jay and I took a relaxing walk around the island and even swung in a hammock together. I got a good laugh when I got off. The hammock flipped up side down and Jay fell off!

We attended midnight mass on the ship with a 78 year old retired priest named Father Frank. It was actually his birthday too, on Christmas day. It was hard singing the Christmas songs during Mass. So many tears fell from missing my Timmy so much.

Seeing all the little ones around is difficult. My heart is heavy knowing that Timmy would have been running around playing with all of them. I am so grateful that our family is together...it's just a little smaller now. I have Timmy's picture on the table next to the bed. I also brought his "Buddy Bear" with me. Our room attendant asked me about Timmy's picture. When I told her that Timmy had passed away, she hugged me and we cried together. People are so good..so caring and compassionate.

Time to say goodbye and thank you for all the beautiful Christmas messages. I will update soon.

With Love & Missing Timmy,
Susan

Monday, December 18, 2006 6:28 PM CST

Dear Everyone,

It’s hard to believe that Christmas is just a week away. It’s hard to believe that we are leaving for our cruise this Saturday. It is going to be very strange spending Christmas in the Caribbean. I wanted Christmas to be different this year. I am sure being in St. Maartens, St Thomas and CocoCay, Bahamas will accomplish that. This New Jersey girl is use to freezing cold and snow on Christmas, not warm tropical weather. I think the change will be good for all of us. One of the biggest worries I have about the cruise is the pictures. Anyone who cruises knows that photographers are everywhere and always taking pictures. Our family picture will be different now…Timmy will not be in them. The thought of that hurts a lot.

I have some good news to share with everyone. With the help of an accountant, we have formed “The Timothy Pauxtis Foundation, Inc”. We are also in the process of applying for a 501 (c) 3 status to become a not for profit and tax exempt organization. The Foundation has already received donations towards the Scholarship Fund for a student pursuing a degree in Nursing. Other goals for our Foundation are to raise awareness about pediatric brain tumors. Our hope also is to raise money towards research. This Foundation will be such a good way for our family to channel our grief. I will keep everyone updated on our progress.

This Wednesday night at the Ronald McDonald House will be exciting. I have arranged with the help of a few friends to supply the house residents with dinner that night. Right now we have baked ziti, meatballs, fried chicken, rice and beans, mixed vegetables and salad. We also have many different desserts. After dinner we will be gift wrapping lots of toys for many needy children. Thank you very much to all my friends who will generously supply the food and volunteer their time to help wrap toys. I think it will be a fun night.

Timmy’s Christmas tree at the cemetery has many new ornaments on it. The tree really does look beautiful. It makes me happy that people are coming to visit Timmy and that he is being remembered this Christmas.

Thank you to all the beautiful ladies at Angel Wings for all the thoughtful Christmas cards. I loved the Angel ornament Cheryl! Also, thank you to my Caringbridge friends Kristin, Susan, Nicole, and Ori for the thoughtful Christmas cards too. You will all be in my heart and in my prayers on Christmas Day.

Please keep all the children battling cancer and brain tumors in your thoughts and prayers. Remember Genna, Gabbie, Skylar, Valerie-Grace, Brianna, Hadley, Carly, Jordan, Brent, Luke and Matthew. This will be a first Christmas for so many Angel families without their children. Please remember James, Jacob, Kyle, Scott, Justis, Matthew C. baby Vincie, baby Megan Jean, Dani-Ella, Kortney, Trey and Luke N.

I am sure this will be my last update until after we come back from our trip. You never know though…the ship does have internet access, so maybe I will be checking in.

Merry Christmas everyone…may you all be blessed with the love of family and friends like I have on Christmas Day.

With Love & Really Missing Timmy,
Susan

Monday, December 11, 2006 7:30 PM CST

LIGHTS OF LOVE
By Jacqueline Brown

Can you see our candles
Burning in the night?
Lights of love we send you
Rays of purest white

Children we remember
Though missing from our sight
In honor and remembrance
We light candles in the night

All across the big blue marble
Spinning out in space
Can you see the candles burning
From this human place?

Oh, angels gone before us
Who taught us perfect love
This night the world lights candles
That you may see them from above

Tonight the globe is lit by love
Of those who know great sorrow,
But as we remember our yesterdays
Let’s light one candle for tomorrow

We will not forget,
And every year in deep December
On Earth we will light candles
As…we remember

It is very hard to put into words how difficult, but special last night was. I was nervous about attending the “Children’s Memorial Day” at Children’s Hospital of Philadelphia, but so determined to honor Timmy and all the other angel children. I felt that by being there, I somehow was facing the beast that took away my child and saying “here I am... you haven’t defeated me!”.

We arrived almost an hour early for the ceremony. We had no problem getting into Philadelphia and parking. The lobby of the hospital was set up with the pictures and names of all our children. We were given tote bags filled with candles, memorial books, programs, commemorative votive candles and of course tissues. They also had the entire lobby set up with hot and cold drinks and gave out small shopping bags filled with special treats.

The hospital did a magnificent job remembering our children with love and celebrating their lives. The ceremony was held outdoors on a beautiful night where it was almost 50 degrees. The plaza was filled with what we were told was almost 1,300 people. The ceremony opened up with songs by Woody Wolfe and a welcome from Malinda Hill, the hospital’s bereavement coordinator. Next the poem “Lights of Love” was read and that’s when the tears began. At exactly 7PM our candles were lit and the names of all the children who have passed away were read. It was an unbelievable sea of lights. There were over 350 names read (from as far back as 1996). As I heard Timmy’s name read, I looked up into the sky and noticed hundreds of stars shining in the sky. I thought of the saying “Perhaps they are not stars in the sky, but rather openings where our loved ones shine down to let us know that they are happy”. How I hope they were watching. I said a prayer for Timmy and all the angel children and their families that I have become attached to.

It was a very emotional night, so many tears, but I am glad that we went. I plan on making it a yearly tradition. It was difficult taking pictures, but there are a few below of me, Jay, Aunt Liz and her daughter Cindy.

Thank you to everyone who lit candles for Timmy and all of the angel children last night. I am so proud of Timmy and feel honored that he is being remembered.

With Love & Missing Timmy,
Susan

Friday, December 8, 2006 10:38 AM CST

Hi Everyone,

This is such a difficult season to be grieving the loss of a child. It seems that the whole world is celebrating except us. This past weekend brought so much heartache and many tears when the day came that we would have “all” gone to get our Christmas tree together. Last year, Timmy sat in the car as we carried many Christmas trees over to him to get his approval. He was just too weak to walk around. It was our tradition, part of the joy we as a family shared together. We only put up our small “Timmy tree” in our family room this year. The tree is filled with ornaments that remind us of Timmy. It has Winnie-the-Pooh blinking lights, a Cub Scout, Sponge-Bob, Scooby-Doo and some ornaments made by Timmy. I’ve ordered a Merry Christmas from Heaven ornament with Timmy’s name engraved on it. I bought Timmy his first present, something he got every year, the new Hess toy truck. I also found the most beautiful heart-shaped wreath and it is hanging on the upper level of our house for everyone to see. I have no doubt that as people drive by, they will know what it stands for, and think of my Timmy.

My time at the Ronald McDonald House this past Monday night was special. I brought along a friend, Timmy’s friend, Marianna. Marianna was Timmy’s first best friend going back to Nursery School. They were so happy, innocent and inseparable then. Marianna and I had a fun night together. It was the best medicine for me, spending time with her. We kept busy by stuffing hundreds of envelopes, talking with the house guests and best of all, playing games together in the play room. Marianna beat me terribly in a game of pool and air hockey. We talked a lot and laughed a lot. I feel so close to Timmy when I am with her. Marianna and I have a special bond that I hope will always be there. I go back again next Thursday night.

Timmy now has his very own Christmas tree standing right next to his headstone at the cemetery. It was another sad first, but it made us happy to do it. The tree came out beautiful! It has battery-operated lights, blue bows and some ornaments. Please feel free to go by and decorate Timmy’s tree with an ornament. I left lots of spots open for some more from family and friends. See pictures below.

On Sunday, December 10th at 7 PM (local time) our family will be attending the “National Children’s Memorial Day” at Children’s Hospital of Philadelphia. Timmy’s Godmother Liz, her daughter Cindy and hopefully my brother and Timmy’s Godfather, Tom will be coming too. Compassionate Friends started this candle lighting ceremony to honor children of all ages who have passed away. This candle lighting ceremony is a way to show unity in remembering the lives of all the precious children in this world who are no longer with us.

This will be our first time back to Children’s Hospital of Philadelphia since Timmy passed away. I know it will be difficult. I know there will be many tears. We need to stand tall and proud, and hold our candles for our Timmy and all the other brave, beautiful children. I invite everyone to please light a candle at 7 PM on Sunday night to honor all the Angel children, so “that their light will always shine”.

I know that during this Christmas season my updates are sad. I choose to think of this time as a bittersweet time. I am taking it one day at a time and giving grief its full dues. At the same time, I am so grateful to all my friends and family who continue to love me, support me and allow me to grieve with them. I will get through this difficult season. One of the greatest gifts of grief is that it allows me to understand and express the deeper meaning of what Christmas is all about. It is my hope that you cherish all the loved ones in your life. Don’t take anyone or anything for granted. I am a big believer in hugs. Give hugs freely to all of your friends and loved ones. The best thing about a hug is that you are guaranteed one back!

“The best and most beautiful things in the world cannot be seen, nor touched, but are felt in the heart”.

Helen Keller

With Love & Missing Timmy,
Susan

Friday, December 1, 2006 9:13 PM CST

Hi Everyone,

It’s hard to believe it is December 1st already. Even harder to believe is that it was 70 degrees here in the Northeast today. Everyone is out Christmas shopping, decorating their homes and buying their Christmas trees. Honestly, it’s hard to feel the spirit of Christmas this year. I know everyone understands why. I am glad Andrew and Jason are older and are just fine with a different Christmas this year.

My friends and I are in the process of putting together the 1st Annual “Hoops for Timmy” Memorial Fundraiser. This is a fundraiser that will give the students at Middletown Village School the opportunity to turn their sadness into something positive. The general idea is for each child to get one minute to shoot baskets. Friends and family will make pledges for each basket made. We plan on having a bake-sale at the same time too. There are so many details to be worked out, but I think this will be a fun way for the children to raise money for Timmy’s Scholarship Fund. My friends continue to be so good to me. I must mention that a wonderful lady, a new friend, another angel has come into my life. Peggy Biebel is a mom who many years ago lost her infant daughter Megan to Sudden Infant Death Syndrome. Her family for the past seven years has raised a tremendous amount of money for SIDS research. Peggy has reached out her hand to me. She knows my heart because she has been there. Thank you Peggy, for already making such a difference in my life, and being there for me.

Last night Jay and I traveled to Pennsylvania and attended Kyle’s “Celebration of Life”. It’s hard to explain, but I just needed to be there. I wanted to be there to show support for Kyle and his family. I wanted to give Kyle’s mom and dad a hug. I wanted to honor this brave warrior who fought so hard for so long against this horrible disease.

Kyle’s mom Joan wanted to do something different and special and that she did. Kyle’s services were held in a beautiful old mansion. There was a video of Kyle’s life playing. The room was filled with flowers, candles, pictures and what his mom wanted the most, peace and calm. It was hard for Jay and me to see Kyle. We both cried because he reminded us so much of our Timmy. Kyle’s family gave out little packets of sunflower seeds that said “Plant Kyle’s sunshine”. We took a few and plan on spreading Kyle’s sunshine. We will always remember Kyle.

It was wonderful to see you last night Nicole. Thanks for the great hug. It made my night to see your beautiful new baby Italia!

I am working at the Ronald McDonald House on Monday night. There is a lot of activity going on now. Coming up is the Festival of Tree’s and a Toy Wrapping Party. I plan on putting on my happy face and helping out. I really look forward to my nights there.

Please keep all the children battling cancer and brain tumors in your thoughts and prayers. Genna, Gabbie, Skylar, Valerie-Grace, Brianna, Hadley, Carly, Jordan, Luke and Matthew. Remember the angel families, especially during this difficult time of year. James, Jacob, Kyle, Scott, Justis, Matthew C, Dani-Ella, Kortney, Trey and Luke N.

With Love & Missing Timmy,
Susan

This poem is beautiful……………..

Merry Christmas from Heaven

I still hear the songs
I still see the lights
I still feel your love
On cold wintery nights

I still share your hopes
And all of your cares
I’ll even remind you
To please say your prayers

I just want to tell you
You still make me proud
You stand head and shoulders
Above all the crowd

Keep trying each moment
To stay in His grace
I came here before you
To help set your place

You don’t have to be
Perfect all of the time
He forgives you the slip
If you continue the climb

To my family and friends
Please be thankful today
I’m still close beside you
In a new special way

I love you all dearly
Now don’t shed a tear
Cause I’m spending my
Christmas with Jesus this year

John Wm. Mooney Jr.

Monday, November 27, 2006 12:14 AM CST

Dear Everyone,

Heaven has gained a beautiful new Angel. As his mother Joan beautifully wrote "In the wee hours of this morning, with me by his side, my Kyle felt his peace".

My thoughts, heart and tears are with the Kerpan family.
www.caringbridge.org/pa/kyledkerpan

Two years ago today, November 27th, 2004 my life changed forever. My baby, my beautiful, happy eight year old Timmy was diagnosed with a brain tumor. A year ago I hoped and prayed that I would be given one more year to fight this beast, this cancer...but it was not meant to be. I am so proud of this child and the battle that he fought. This is just a sad day for many reasons, but I will always hold onto the gifts of hope and faith. Hope for all the children battling cancer and brain tumors that one day there will be a cure. Faith in life and faith in life after death. Faith that our loving God has Timmy in his tender care until the day I see him again.

My Grief is Like a River

My grief is like a river...
I have to let it flow,
But I myself determine
Just where the banks will go.

Some days the current takes me...
In waves of guilt and pain,
But there are always quiet pools
Where I can rest again.

I crash on rocks of anger...
My faith seems faith indeed,
But there are other swimmers
Who know that what I need.

Are loving hands to hold me
When the waters are too swift,
And someone kind to listen
When I just seem to drift.

Grief's river is a process
Of relinquishing the past.
By swimming in hope's channels
I'll reach the shore at last.

Author: Cynthia G. Kelley

Always holding onto hope...
I love you Timmy,
Mom XXXOOOO

Friday, November 24, 2006 10:23 AM CST

Good Morning Everyone,

It is finally the day after Thanksgiving and the sun has come out. For the last couple of days it has been cold and rainy. The rain had a way of adding to the sadness that I tried desperately to stay away from. I thought if I kept telling myself that I still have so much to be thankful for, that I wouldn’t fall into the sadness pit. It really all started on Wednesday. The mind is so powerful. The more you try not to think about something, the more you do. I had to be at the Ronald McDonald House at 5PM. I mentally beat myself up to pull it together. The RMH was a great distraction for me that night. It was an extremely quiet night, but I was there for all the families that needed me. The house had a few frozen turkeys delivered during the day and the best pies from a local farm market. My dinner that night was a piece of pecan pie and pumpkin pie. I go back again next Thursday night.

Thanksgiving Day went very well. I drove to Tom’s River to pick up my mom and dad, and Jay was the chef of the day. I did do the buffet and it was the right something different to do to help make Timmy’s absence less noticeable. When it came to dinner time I noticed I had two extra plates sitting on the table. It’s funny, I’ve heard stories of this happening and I thought that Timmy must have been with us. It was so like Timmy to bring a friend along too. It was funny and the thought of it made me smile. I also had a family picture sitting on the table and an angel candle burning all day for Timmy.

Our whole family went to the cemetery in the pouring rain to visit with Timmy. We could only stay for a few minutes because it was so cold and wet. My mom brought Timmy his first miniature Christmas tree. I cried because it’s so sad that now on every major holiday, on my list of to do things, will be visiting the cemetery. I am glad the day is over.

Backing up to Tuesday, I went to one of my final ALPHA classes. What a powerful topic we discussed that day. The topic was “Does God Heal Today”. Some of you may remember my friend Laura (her website is in the links below) whose daughter is a brain tumor survivor of seven years. Laura has also been taking the ALPHA classes. The discussion became very personal. What a better way to try to understand God’s wisdom then comparing why one child died and another survived. We talked about God’s plan for everyone. We talked about how we just won’t know why until the day that we come face to face with Jesus. My friend Laura shared with me that she worried that I would resent her because her daughter survived and my Timmy didn’t. I never knew she felt that way and I never, ever, ever felt that way. It was such an emotional topic and this small group of women have all become so close, so connected. I remember months ago saying that one of the objectives of this course was to find out “the meaning of life”. This course came to me for a reason. I’ve learned that family and friends are there for you in your greatest time of need. We are all tied together by love, compassion and kindness. Along the way many angels have come into my life and reached out their hands to me. In turn, I believe that I am acquiring all this knowledge and will someday be able to give life-giving hope or comfort to others.

The new song you hear playing is called “You Are Loved” by Josh Groban. I played many of his CD’s while Timmy was lying in his hospital bed during hospice. I think this young man has a true gift and his songs continue to comfort me, as they did Timmy.

Next week we will start the planning of one of our fundraisers for Timmy’s Scholarship Fund. It will involve Timmy’s school and all of his friends. Some of the children are missing Timmy so badly. I don’t see this side of the grieving journey. My friends have told me that their children think of Timmy always, and are sad and missing him. I think having a fundraiser involving the children will be a good way to help them work through this sadness. I am excited and a little bit nervous about starting this.

I think it’s a good time to tell everyone that the way we spend our Christmas will be very different this year. Andrew, Jason, Jay and I are going on a Caribbean cruise. We leave December 23rd and will return on December 31st. I just cannot do a traditional Christmas this year and I think getting away will be what’s best for us.

I am thrilled to tell everyone that Genna’s MRI is stable….stable….stable…No more chemotherapy for three more months. With the good comes the bad. Once again a child is slipping away from his very long battle with brain tumors. Beautiful Kyle may be at the end of his journey now. Please visit his website and leave a message of support for his family www.caringbridge.org/pa/kyledkerpan.

Thank you everyone for all your messages. I appreciate that so many of you are still coming to Timmy’s website and supporting us.

I will update soon.

With Love & Missing Timmy,
Susan

Sunday, November 19, 2006 7:20 PM CST

Hi Everyone,

Jay and I had a Timmy memory this weekend. The song you hear playing is “Angel” by Lionel Richie. This was a song that Timmy loved and silly-danced around the house to. There were times when I joined right in with him dancing. We would laugh and have so much fun. Timmy loved music, singing and dancing. I think he really had talent! It was a wonderful Timmy memory.

My first night alone at the Ronald McDonald House was great. I felt good sitting in the House Manager’s Office being in charge. I needed to feel like I was doing something good and making a difference and I did. The house is still very quiet with just four families staying there. I unfortunately cannot write about any of the families due to strict privacy rules. I don’t want to get into trouble. My friend Ceil who trained me last week came back to visit me. It meant a lot to me that she did that and was there with me on my first night. I am looking forward to working again this Wednesday night.

On Thursday, I had lunch with two moms’ who also have Angel children lost to brain tumors. It is unbelievable that within ten miles of my home, two other children battled with the beast too. Kristen is mom to Kortney who was 9 years old and had a brain stem glioma. Kortney passed away just two weeks after Timmy on April 28th. She was also a patient at CHOP. Kortney’s website is http://www.caringbridge.org/visit/kgillette. Lisa is mom to Matthew who was 5 years old and had gliomatosis cerebri. Lisa’s loss is so new. She lost her precious Matthew on October 2nd. Matthew was also a patient at CHOP. Matthew’s website is http://www.caringbridge.org/visit/matthewc1. We had a nice lunch together and found so much to talk about. Grieving moms’ all have that same empty, sad, lost look in their eyes. Our voice shakes when we talk about our children and we are never far from tears. It is just an incredible heartache to carry around all the time…but we do…we will…and we have each other now. Please visit Kortney’s and Matthew’s website and leave a message of support.

My brainstorming wine and cheese party was very successful Friday night. Over 20 friends showed up with lots of ideas to raise money for Timmy’s Scholarship Fund. Everyone was very enthusiastic and will be a big help to us. At one point in the evening, so many people were talking to me, I became overwhelmed and cried. At the end of the evening, we narrowed all the ideas down to about three events that I think will be wonderful. I will share more details as we move along. Thank you everyone who came by and for all your support. I am blessed with the most wonderful friends.

Well Thanksgiving will be here Thursday whether I like it or not. Andrew is now home for a week and it feels good for us all to be together. I am thinking about doing a buffet Thanksgiving instead of a sit down dinner. Sitting at the dining room table just makes Timmy’s absence so much more noticeable. In the past week, I have had many wonderful things happen to me that remind me that there is still so much to be thankful for. A woman named Theresa, whom I do not know sent me an email about my Timmy. She has been following my journal and wanted me to know what an impact Timmy and I have had on her life. She thanked me for sharing Timmy with her. I love knowing that there are people that I do not even know, following Timmy’s story. It is part of his continuing legacy. Also, two days ago, I found a United States Coast Guard hat by Timmy’s headstone. It included a note from a father who also lost his child to a brain tumor. He was in town from Yorktown, Virginia and went out of his way to visit Timmy. Thank you so much Dan of the US Coast Guard for thinking of Timmy. I am honored that you came by to visit. Angel parents share an incredible bond of love and support for all our children.

Please keep Genna in your thoughts and prayers especially tomorrow. It is three months off chemotherapy and she is having and MRI to see what her tumors are doing. This is such a scary time for her parents and they need to hear that everything is stable. Also for Kyle who is still in Children’s Hospital peaceful and calm and battling on. For Gabbie who is having some really bad days that she will feel better soon. For Skylar, Valerie-Grace, Brianna, Hadley, Carly, Jordan, Luke and Matthew. For all the Angel families of Justis, James, Scott, Jacob, Matthew C, Matthew W, Trey, Luke N, Kortney, Dani-Ella and baby Vincie.

Wishing you all a wonderful Thanksgiving together.

With Love & Missing Timmy,
Susan

Monday, November 13, 2006 9:03 PM CST

Hello from an unseasonably warm, very rainy New Jersey. This weather for November is very strange. The warmth feels good but the dreary rain we can all do without. I have been having a difficult time with the change in season. I think about Timmy all the time as the weather changes. I have this motherly need in me to keep him safe, dry and warm. I have been told that when it snows, I will need a shovel to make a path, when I go visit him in the cemetery. Some people may think I am crazy, but I have no doubts I will shoveling my way in to visit him.

Last Wednesday night at the Ronald McDonald House went just fine. I trained with a woman named Ceil. It was once again a very quiet night with answering the phones and just making sure everyone and everything was taken care of. There really aren’t many children there right now. As the holidays approach, the house gets empty. I am told I will be wrapping lots of Christmas presents soon. I enjoyed my time with Ceil. She is a fifth grade teacher at a local school. The quietness allowed us to talk a lot and we discovered we had a recent loss in common. Ceil lost her husband during a car-jacking. It was a heartbreaking, tragic loss for her and her family. I hesitate to talk about Timmy because it usually makes people cry, but I have found that people like to talk about their loss. I showed Ceil a picture of Timmy, and boy did we cry together. I felt so bad, but Ceil gave me the biggest hug. I think the cry was good for both of us. This Wednesday night I am by myself for the first time at the Ronald McDonald House. I am a bit nervous but excited too.

Well as most of you know, our Jason was accepted into the Florida Institute of Technology’s Aviation Science Program. Junior year and SAT’s were tough for Jason as we were away a lot with Timmy. Jason was very pre-occupied with helping take care of and worrying about Timmy. I am so happy for Jason. He has something wonderful to look forward to. I know without a doubt, that each time Jason is flying his airplane in the sky, he will feel close to his brother Timmy. You can’t get much closer to Heaven then that! Maybe in about five years when you all board a plane, you will hear: “This is your pilot Jason Pauxtis” :)

Along with the happiness for Jason comes the realization that by next summer Jay and I will have the “empty nest”. It already hurts thinking about it. If only all three of my boys could have grown up and went away to college. If only things happened the way they should have, the natural order of events. With Timmy dying, I feel as if my job as mom was taken away from me to soon. I was planning on being a mom for many more years to come. I know it’s going to be hard not having my boys around anymore.

As for Andrew, he will be graduating this year with his Bachelor's Degree in Communications. He has started to take graduate courses in Information Systems and will receive his Master's Degree in May, 2008. Way to go Andrew!

Friday night I am having about 20 of my friends over for what I am calling a “brainstorming wine & cheese party”. We need to think of ways to raise money for Timmy’s Scholarship Fund. I am sure these girls will come up with some wonderful ideas. I am looking forward to seeing everyone.

My friend Romelle sent me this beautiful slideshow which I would like to share with everyone. It is very inspirational and truly makes you think about your life and the people who come into our lives. Thank you Romelle for sending this to me.

Please keep Kyle and his family in your thoughts and prayers. They are having such a difficult time right now. My heart is with you Joan.

With Love & Missing Timmy,
Susan

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Tuesday, November 7, 2006 9:49 PM CST

FRIDAY MORNING UPDATE:

I have some fantastic news to share with everyone. Jason made it into the Florida Institute of Technology. His acceptance letter said:

Dear Jason,

When you visited, I was pretty sure you would be admitted if you applied, but we admit so few, I couldn't say anything back then. Well now I can add my congratulations. You made the cut and you're accepted. Give yourself a pat on the back and tell your family to do the same. You have all done something special and have my okay to act a little smug for awhile. You made my day!

I'll see you in the Fall.
Professor Paul Davis

Jason still has other colleges to hear from but this is the one he wanted so much. We are so proud of him....

Dear Everyone,

I was happy and encouraged to read the Fall “Messageline” publication from the American Brain Tumor Association. The ABTA has awarded its largest grant ever to help fund a research study to identify a gene or genes that will help predict who will develop a brain tumor. The study will concentrate on brain tumors called “glioma’s". This is the type of tumor that Timmy had. Thank you to all my family and friends who donated to the ABTA in Timmy’s memory. Your donations helped make this research possible. For more information go to www.abta.org/gliogene.htm

This past Saturday, Jay and I spent the day with some special friends at a place called Peddler’s Village in Pennsylvania. During the weeks that Timmy had radiation at the Hospital of the University of Pennsylvania, we met Gracie (then 6 yrs old) and her mom and dad Peggy and Hugh. We also met Kelley and her husband Chris. Both Gracie and Kelley underwent radiation at the same time as Timmy. They are now brain tumor survivors. We have known each other for almost two years now and have been through all the good and bad together. Thank you Peggy, Hugh, Kelley and Chris for all your love and support. I know we will be a part of each others lives forever.

I had a visit today with my long-time family doctor. I have not seen him since Timmy passed away. He knew Timmy had passed away and was so genuinely saddened by it. He spent a lot of time talking with me about the loss of a child. We spoke about the grieving process and the best way to take care of me right now. We spoke about Timmy’s last days, his last hours. I always have questions that I need answered to reassure me that Timmy did not suffer. Once again I was assured that my boy did not suffer in the end. I could never hear that enough. He ended our visit with a hug and a promise that I will be okay someday.

As Thanksgiving approaches, I cannot even begin to imagine how difficult it will be having an empty seat at our dining room table. Thanksgiving is a time for families to gather and give thanks. It’s hard to be thankful, but I do know I have a lot to be thankful for still. Our family gathering will be small this year. I plan on cooking, my mom and dad will join us. I will be setting a place at the table in memory of Timmy. I will also light a candle for him as a symbol that he will always be a part of our family.

Tomorrow night I will be having my second training session at the Ronald McDonald House. I am looking forward to it.

Thank you to all the Middletown Village families who come to Timmy’s website for the first time. I appreciate your support of the Timothy Pauxtis Scholarship Fund. My Timmy was a sweet, happy boy. He had so much love inside him. He loved his mom and his family so much. He was very brave throughout all his treatments, never questioning, always doing what we asked him to. Please feel free to read the journal history to learn more about Timmy and his brain tumor journey.

My friend Julie sent me an email today that really lifted my spirits. She said that she knows that my heart aches for more of Timmy’s love. She said to remember how blessed I was to have ten wonderful years with Timmy. Now, I get to spend the rest of my life loving him and treasuring the love that he gave back to me. Thank you so much Julie.

As always please keep all the children battling brain tumors and cancer in your thoughts and prayers. Genna, Gabbie, Skylar, Valerie-Grace, Brianna, Hadley, Carly, Jordan, Luke and Matthew. Kyle needs extra prayers; he is still in Children’s Hospital and fighting. Also the Angel families of James, Jacob, Justis, Dani-Ella, Matthew C, Trey, Kortney, Scott and Luke N.

With Love & Missing Timmy,
Susan

Wednesday, November 1, 2006 7:24 AM CST

Hello Everyone,

Halloween has come and gone and what a beautiful day it was for the children. It was more than 70 degrees here yesterday. We had a record 100 plus children trick-or-treat at our house yesterday. The children love our house because we give out the biggest candy bars. Jay and Jason gave out the candy during the afternoon and evening. My funny 18 year old Jason went out with his friends trick-or-treating in the evening. Jason wore an army jumpsuit and army helmet that belonged to Timmy. These were things given to Timmy when he had his visit to Fort Dix. I think it was Jason's way to honor his brother.

I managed to keep very busy on Halloween, just like I planned to. I wanted to disappear from it all together. In the morning I attended my ALPHA class. It was an extended class that included a delicious lunch with all the girls. Our lesson was "Who is the Holy Spirit" and "What does the Holy Spirit Do"? We learned that every person has the Holy Spirit in them. Some of the woman actually know the exact moment that they were empowered with the Holy Spirit. Well my journey continues. I read, I pray but I haven't experienced my moment yet. I am told it takes time. I think I have a blockage somewhere. I'd like to believe that some of the gifts that I have to give, may be the Holy Spirit already working in me. I still have a month of lessons to go.

After my class, I headed over to the cemetery to visit Timmy. Timmy's stone is decorated so beautifully. He has gotten many gifts for Halloween. He has a big scarecrow, mum plants, pumpkins, balloons and a blinking pumpkin necklace. While I was there, Jason came by and we sat together for a while talking about what costume Timmy might have wanted this year. Sometimes when I sit there, it just seems so unreal. Jason and I sitting at the place where his ten year old brother is buried. I think a picture of that should be put in newspapers and magazines everywhere. It may just open up some more eyes to childhood cancer and brain tumors. I want so much for a cure to be found!

I headed down to the Ronald McDonald House for my 5-9PM training. A wonderful woman named Nikki trained me all evening. First, the house is very quiet. There are eight rooms, all beautifully decorated with individual themes. They have a muralist who has brought so much beauty into this house. There were five families staying there. Four of them had premature babies in the hospital next door. One family had a child with leukemia. The house has been recently remodeled and it is amazing. It has a state of the art kitchen, flat screen TV's, laundry room, and a recreation area that any child could spend all day and night playing in. People are obviously very generous to this RMH. My duties will be answering phones, registering guests, answering the door, enforcing the house rules, supervising groups that come in to volunteer or cook, and just making sure the house guests have everything they need. There are a lot of spanish speaking people in the house so I think I have to brush up on my two years of high school spanish. The 5-9PM shift is very quiet though, but I felt very good being there. I train again next Wednesday night with another woman and then the following Wednesday, I am on my own....

When I left the RMH at 9PM, I took a wrong turn and ended up driving past Monmouth Medical Center. MMC is the hospital where Timmy's tumor was discovered. As I drove past the emergency room, I had this overwhelming panic hit me. I had flashbacks and started to cry. I just burst into tears and had to pull off to the side of the road. This has never happened to me before. After I calmed down, I felt so disoriented that I had trouble figuring out which way to get home. I did get home okay and that "griefburst" is something that I hope will never happen again.

Timmy's Scholarship Fund is officially getting organized. A letter will be sent home to all the parents at his school asking for donations. I do not like asking people for money. I know this is for a good reason and I have so much support for doing this. In the letter we included the link to Timmy's website for the parent's who do not know about Timmy. To all those parent's who come to visit Timmy's website for the first time, I want you know that my Timmy was a brave, beautiful child. He fought his cancer never asking any questions. He did everything we asked him to do. A scholarship will be a way to honor his memory. My hope is to encourage a high school senior who chooses to go into nursing. The nurses throughout Timmy's journey were the ones who got us/Timmy through this journey. Their love and kindness will never be forgotten. Our family would like to award a student who chooses to go into nursing each year.

I also have a get-together planned with many friends to "brainstorm" other ways to raise money. Of course we will probably do a car wash, a bake sale, maybe even a bike ride. To all my dear web friends, please know I am not asking anyone for donations towards this scholarship fund. Maybe, somewhere in the future, we will do a fundraising event to raise money for childhood brain tumor research. Right now we can do the fundraising for this scholarship through the school and our town.

This update has become so long but there is one more thing that I need to ask everyone. First, please continue to pray for Kyle and Matthew. They are both still in the hospital battling on. Next, I have a wonderful friend Ori whose daughter Gabbie has been battling Neurofibromatosis 1 for about eight years. NF1 causes non-cancerous tumors to grow anywhere in the body. Gabbie has tumors in her neck, chest, spine and left arm. Gabbie and her family have chosen to discontinue chemotherapy because it is not working and Gabbie is so tired of being sick. Gabbie is having a very difficult time right now and her mom is asking for cards, lots of cards for her birthday on November 9th. Gabbie's website is www.caringbridge.org then go to visit: gabriellehughes.

If you all have a chance please send Gabbie a card. Every child loves to get mail and I know this will make her very happy. Gabbie will be 12 years old. Her address is:

Gabrielle Hughes
RR1 Box 271
Kingsley, PA 18826

Thank you all for continuing to read Timmy's journal. I will continue to update as often as I can.

With Love & Missing Timmy,
Susan

Tuesday, October 24, 2006 4:40 PM CDT

FRIDAY NIGHT UPDATE:

I had my interview at the Ronald McDonald House this afternoon. I am so excited that I will soon be a house parent at this wonderful place. I was honest and told the house manager about Timmy. She was truly touched that I wanted to give back to them, especially this soon after Timmy had passed away. I start training on Halloween. First baby step completed, and it feels good.

I will fill in the details next week.
Have a good weekend.

Love, Susan

Dear Everyone,

It is definitely Autumn time here in New Jersey. The weather is in the mid-50’s now and the wind is blowing. The leaves are falling from the trees and the sky is so gray. This simple change of season, I never noticed the beauty of it until now. Somehow in my grief, I feel a newly enhanced sense of the changes in our world. As I live my days lately, I feel as if I am experiencing the world for two people. I can sense the presence of Timmy and his love in all I see and do.

Much to my delight, I found 5 more “I love you, I love you too” notes in a drawer under Timmy’s captains bed. That makes a total of 31 notes. Do you think maybe he wrote one for each day in the month? Jay also found an old brief case of his in the garage. When he opened it, he found at least 15 drawings of Timmy’s from a day when Jay took him to work with him a few years ago. . The best drawing was a picture of Timmy and me together with lots of hearts floating from our heads. In the sky he drew the sun with lots of happy faces in them. Timmy had so much love in him. I was so very lucky to be loved by such a great kid. How I wish I could have more, more, more….

One day last week I had the Ronald McDonald House on my mind so much. I felt like I just needed to call them. I spoke to the woman in charge of the volunteers and I got all kind of excuses for why they didn’t call me. She told me they had the wrong phone numbers, when in fact my phone numbers were correct. The woman said they were still in need of volunteers. I am being interviewed this Friday. Hopefully this will be a good thing for me. All they ask for is one 5-9PM shift, one day each week. If it feels right, I will do it.

Well the “Great Race” was a huge success for our Middletown schools and also a huge success in honoring Timmy. I had 150 “Team Timmy” ribbons and they were all given out. Everyone was wearing one. I was so nervous about going. It was very hard seeing all the children. So many of them were Timmy’s classmates and they have all grown so much. I can’t even begin to tell you how many hugs I got from everyone. I think everyone was glad to see me there. When I got home, I cried so much. I just missed Timmy. I missed our walking together. I have a few pictures below from the race. Some of the women in these pictures are my dearest friends. They have been there for me from the beginning and continue to support me.

Thank you to everyone who leaves a message in the guestbook. You have no idea how much they mean to me. I can be having the saddest day and then I come to Timmy’s website. Your messages have the power to make me happy and smile.

My days are pretty quiet around here. I tend to sleep in late most days and stay up late at night. I am still attending my ALPHA class which I enjoy very much. I also continue to see my therapist once every week or so. I shop, I exercise (sometimes) and go out with friends. I have been spending a good deal of time getting this house cleaned up and organized. I have plans to redecorate my living room. I don’t know where the day goes sometimes. I have been told a few times by others that I should get a part-time job. I know it is a good idea. I just don’t know if I am ready yet. I know I have to do what feels right for me, but sometimes I wonder if people on the outside looking in at my life may know better. Since Timmy passed away, I have the hardest time making any decisions. I just hope that I am taking baby steps in the right direction.

Jason has submitted most of his college applications. He has his heart set on the Florida Institute of Technology or Embry-Riddle. I hope he gets into the college he wants. He really is such a good kid and I want him to have something exciting to look forward to. Andrew and Jay are both doing well. Their days are so busy with school and work.

As always, please keep the children battling brain tumors and cancer in your thoughts and prayers. Genna, Gabbie, Skylar, Valerie-Grace, Brianna, Hadley, Carly, Jordan, Luke, and Matthew. Kyle is still in Children’s Hospital and fighting. Also the angel families; James, Jacob, Justis, Dani-Ella, Matthew C, Kortney, Scott and Luke N.

With Love & Missing Timmy,
Susan

Tuesday, October 17, 2006 3:34 PM CDT

Dear Everyone,

First off, I must ask for prayers for a friend's son, Kyle. Kyle is a beautiful, strong, 11 year old boy who has been battling his brain tumors for years. Kyle is in PICU in Children's Hospital of Philadelphia right now. The doctor's are saying he may be nearing the end of his battle. I know what his mom Joan is going through right now. I am so heartbroken for her.

Since October 11th, Timmy's six month anniversary in Heaven, we all seem to be having a difficult time getting ahead of our sadness. There recently was an article in the Asbury Park Press about an experimental chemotherapy that has been very successful in shrinking cancerous brain tumors. What was so difficult and heartwrenching about reading this article was that it was a chemotherapy that was offered to Timmy. When we needed to make a choice about chemotherapy #3, our choices were the clinical trial Lapatinib or experimental, not used on children yet, Avastin/CPT-11. We chose the Lapatinib because the Avastin/CPT-11 came with too many possible side-effects. We were afraid, we did not want Timmy to suffer. Back then we made the best decision we could, but now all the what if's, could have, should have's are invading my brain. You just never know...it could have worked...just maybe. Jay and I have cried so much over this because we wonder if we made a bad decision. We know Timmy's cancer was aggressive. It may have just bought him some more time. The article also went on to say that brain cancer is the worst possible cancer because it devastates your mind and your body. It takes away the person that you were. We saw that slowly happening to Timmy, but just reading it, seeing it in black and white...it hurts so much thinking about what our little guy went through.

I seem to be getting a lot of mail from children's cancer organizations lately. They start their letters with "Can you imagine if your child had cancer?" They say that statistics show that 75 percent of children with cancer are surviving these days. I just don't see it or believe it. Many beautiful children have passed away since I entered this world of children's cancer. I just wish children's cancer had the publicity and money that breast cancer is getting. It just is not fair.

I know so far my update has been very depressing. I apologize for that but I am venting...venting...venting...

I was approached by the Middletown Board of Education about setting up a scholarship in Timmy's memory. I have been thinking about it alot. First, I need to raise the funds for the scholarship. I don't think that will be a problem once I get all my friends together. I also need to decide who the scholarship would go to. Jay and I have talked about it. I know in my heart, who it is, that I want to support and encourage. The most caring, compassionate and dedicated people that we met during our cancer journey with Timmy were the nurses. From the nurses at Children's Hospital to the hospice nurses to my angel/friend RN Sue Griffin. Their faces and all they did for Timmy and our family will never be forgotten. I will keep everyone updated about this as I get more information.

The "Great Race" to raise money for the Middletown Township Education Association is this Saturday, October 21. I have 150 gold ribbons with the words "Team Timmy" on them. I will be somewhere near High School North around 3PM to give out the ribbons. I know many of Timmy's friends, their families and teachers will be there to walk in honor of Timmy. I am looking forward to seeing everyone there.

I can't believe Halloween is coming soon. This is yet another difficult day to get through. Last year, Timmy was an army man. He was as tough as an army man. I remember how determined he was to trick or treat. He tried so hard, but tired so easily. I brought a wagon to pull him in. He really hated sitting in that wagon. I have some pictures of him in his army uniform. I will post them soon.

Please keep all the children battling brain tumors and cancer in your thoughts and prayers. Especially remember all the precious angels and their families.

Holding onto hope in my heart for a cure for brain tumors and children's cancer someday.....

Hope is a happiness held in the heart
When happiness seems to be gone.
Hope is a quiet joy deep within
Encouraging us to go on.
Hope is a guide when we seem to be lost
That can help us in finding our way.
Hope is a strong, immoveable force
That our doubts and our fears cannot sway.
Hope is a light that burns in the night
In a place where a miracle starts.
And every good thing will come in it's time....
As long as there's hope in our hearts.

With Love & Missing Timmy,
Susan

Wednesday, October 11, 2006 9:27 AM CDT

Dear Friends & Family,

How could it possibly be that it has been six months since I kissed my boy goodbye. Six months since I looked into those beautiful blue eyes and held him close to me. Some days I remember him so vividly. Some days, well it feels like I have not seen Timmy in six years. I miss Timmy tremendously.

I want everyone to know that I will be okay. This grief journey will be the most difficult thing I have to do in my life. I am determined when the time is right to continue my life on in some positive manner. I read something in a book that really got to me. It says that someday, when I have that joyful reunion with Timmy in Heaven, he will ask me. Mom, mom, what have you been doing all this time while I have been gone? Well I want to be able to tell him "I did good things in your honor Tim" and see him smile and make him so proud of me.

Thank you to everyone who continues to pray for us and support us in so many different ways. I never feel alone because of the wonderful people who continue to be here for me. You all continue to share in my (our) love, loss, hope and healing journey for Timmy.

I leave you with another poem for today....

Ask My Mom How She Is...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 is she,
She'll say "I'm alright."
If that's the truth, then tell me,
why does she cry each night?
Ask my mom how is she,
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 Gods 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 is she
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!"

Currently accepting hugs!!
With Love & Missing Timmy,
Susan

Friday, October 6, 2006 8:38 PM CDT

Hi Everyone,

This will be a quick update tonight. I had many quiet moments this week. Moments to look through photographs of Timmy and remember him. I realized when looking at my pictures, that Timmy's life can be divided into two categories: before brain tumor and after brain tumor. I prefer to look at the before brain tumor pictures. I do though have so many wonderful pictures of Timmy, even after he had become so puffy from the evil steroids. It's so odd that now when I think of him, I remember him mostly with the weight gain, the weakened right arm and leg and that beautiful crooked smile. Two of my favorite pictures are below. One is of Timmy when we went on a boat ride during the summer of 2005. I look at this picture all the time and wonder "what was he thinking about?" The second picture was New Year's eve, 2005. He tried so hard to stay awake until midnight, but he fell asleep. I love how peaceful he looks in this picture. I also took many of Timmy's drawings and writings to Staples and had them laminated. Each picture, each paper is a special story, a treasured memory in the life of Timmy. I miss my Timmy so much.

Tomorrow is my son Andrew's birthday. Can you believe I have a son who is 22 years old. Yikes!! Andrew is coming home tomorrow for the weekend. I haven't seen him since school started. We are all going to go out to dinner to his favorite Mexican restaurant. It will be nice for the four of us to spend some time together.

The gold ribbons I had made for the "Great Race" in Middletown on October 21 have arrived. They came out great! If you would like to be on "Team Timmy" and walk with us, please see me before the walk (3PM). I would love to see everyone wearing one.

I have mentioned before that I have become friends with another mom at the cemetery. Sharon tragically lost her 19 year old son Luke almost a year ago. Sharon is establishing a memorial scholarship in honor of her son Luke. This Sunday, October 8th will be the kick-off fundraiser with a car wash at the OutBack Steakhouse in Middletown. It will be in the parking lot from 10AM to 2PM. Donations are $7 a car. Please, please stop by if you can. So many people have worked very hard to put this together. I am hoping for it to be a huge success. Thank you.

Please keep Genna, Gabbie, Hadley, Brianna, Carly, Valerie-Grace, Danny, Jordan, Luke, Kyle and Matthew in your thoughts and prayers as they battle on. Sending hugs to the angel families of Justis, James, Scott, Kortney, Jacob, Dani-Ella, Luke N. and sadly a new angel from a nearby town Matthew C.

A beautiful quote by Elisabeth Kubler-Ross

Each one of us is born for a specific reason
and purpose, and each one of us will die
when he or she has accomplished whatever
was to be accomplished. The in-between
depends on our willingness to make the
best of every day, of every moment, of every
opportunity. The choice is always yours.

With Love & Missing Timmy,
Susan

Saturday, September 30, 2006 7:30 PM CDT

Dear Everyone,

Fall has finally arrived here in New Jersey. The cool nights are wonderful. There is something about a cool breeze coming through the window at night when I sleep that relaxes me. The leaves are starting to change colors and fall from the trees. Since Timmy is buried under a huge tree, I have been doing some daily leaf clean-up. This week I bought two ceramic pumpkins and placed them on top of Timmy’s stone. I had to fill them with rocks so they wouldn’t blow over in the wind. One of the reasons I chose to bury Timmy, instead of put him in a mausoleum, is that I can leave things for him. This cemetery does not allow you to leave anything in front of the mausoleums. I like being able to plant flowers, leave pumpkins, etc. When the time comes, I will bring a small potted Christmas tree. Doing these things just helps me feel closer to Timmy.

It has been a quiet week. I attended my Alpha class on Tuesday. The film for discussion this week was “Why Did Jesus Die”? We spoke about Jesus’ crucifixion, and the physical and emotional pain he endured. It was very difficult for me to listen to this when all I could think about was Timmy’s physical and emotional pain. I was embarrassed because I cried. Why did Timmy die? There are women in my group who have also lost children. One woman lost her child to SIDS many years ago. Another woman lost her son in the 9/11 attacks. It has been many years for all of them and they still don’t know why. They just trust and have faith that someday we will all understand God’s plan for us. I understand in my mind that God has a plan for all of us. It is my heart that will take some time convincing.

I feel as if I am hurting some friend’s feelings for not accepting their invitations for lunch, or just spending some time with them. At this time, almost six months since Timmy died, I just need some more time to myself. There is a book that I am reading that explains what I am feeling so well. The book is called “Healing after Loss”. It says that “at first, we are so busy—so much to do, people to talk with, arrangements to make. Then come the quiet times, and in some ways they are harder to bear. Our loneliness stares out at us from the mirror. All the places we used to go to together, we go to alone. Even if we go with someone else, the gap is still there. In defense, we may start to hurry about, hoping that by keeping ourselves so busy, maybe we won’t notice how much it hurts. It’s good to be active, of course. We do need other people, and activities in which to involve ourselves. But don’t make the mistake of doing this to hide from grief. It will find us in the end and demand its hearing. To inhabit the province of grief for a while is, oddly enough, its own comfort. It is, for a period, our home; it is where we belong, and we need to rest there in quiet and at leisure until we understand its spaces and its meaning. Then we can move on”. I hope everyone understands how I feel right now. I am very grateful for all the love and support. I know that when I am ready, my friends will be there for me.

A beautiful woman and a friend, Susan Amato sent me a flash movie called “I Am Not Gone”. The movie is so touching, the music is very emotional. It is for anyone who has lost someone they have loved. Jason uploaded it for me below because I wanted to share it with everyone. It is especially special to me because it ends with a reading from the Gospel of “Timothy”. Thank you Susan for this very special gift you sent to me.

For Your Information:

On Saturday, October 21, the Middletown Public School district will hold its annual “Great Race”. This is a fundraiser for the Middletown Township Education Association. The money raised is given to teachers to bring new and innovative programs into the schools. At this years “Great Race” many of Timmy’s teachers, friends and their families will be walking in awareness of childhood cancer and in honor of Timmy. We will all be wearing gold ribbons with the words “Team Timmy” on it. Jay and I will be walking in the “Anyway 2K” at 3:30PM. This race is just for the residents of Middletown and I am not soliciting any walkers. If you plan on being there, wear a ribbon for our Timmy, and all the children battling cancer.

Happy 7th Birthday in Heaven to sweet Justis Wayne Yanez………

With Love & Missing Timmy,
Susan

To start the movie from the beginning, press F5 or click the Refresh page button.

Sunday, September 24, 2006 4:40 PM CDT

Hello Everyone,

It has been a pretty good week. I have kept busy meeting with friends and working on little projects. I have felt very close to Timmy this week. I have been remembering his sweetness and the incredible love he shared with us all. It helps so much to talk about Timmy, his little angel ears must be ringing this week.

On Monday, Timmy's Godmother Liz and I went to a Memorial Mass at St. Joseph's Church in a nearby town. A friend and neighbor, Mary Ann Garneau, who also teaches at St. Joseph's had Timmy's name added to a memorial plaque. I have included some pictures below. The mass and dedication were beautiful. Thank you Mary Ann for thinking of Timmy and our family.

I started attending a course called ALPHA (www.alphausa.org). My wonderful friend Michelle Mabry introduced me to it. Alpha is a 13 session introduction to the Christian faith. It addresses foundational questions like, who is Jesus? Why do we need Him? Why should we bother to find out more? Does God heal today? I am Catholic and I do have a good understanding of the foundations of my faith. I don't write about it much because I have a difficult time expressing what my faith means to me. Taking this course is really an opportunity to explore the meaning of life. I am grasping, trying different things to help me be strong, as I learn to live my new life without Timmy. I promise if I find out the meaning of life in 13 sessions, I will share it with all of you. =]

My letter to the Asbury Park Press, about Childhood Cancer Awareness, got a pretty good response. I received many personal e-mails and letters of support from organizations that already do exist for children with cancer. Timmy's website got about 400 hits after that letter went out. I think, hopefully, I opened some eyes and made a difference.

I came up with an idea on what to do with all the "I love you" notes that Timmy left for us. Jay and I worked on this little project together. It really was a good thing to do and left us feeling content and happy. I will be giving one of the little framed notes each to Andrew, Jason and one for Jay at work. Now I must find the perfect place to hang up the large one. See picture below.

Andrew and Jason are doing well. Jason is writing his college essay and is ready to fill out his entrance applications on-line. He is applying to six different colleges. His first choice is still Florida Institute of Technology. This is a stressful but exciting time for him.

Thank you everyone for all the hugs for Timmy. I cannot believe the hug counter hit 1.5 million. I must tell you that knowing that people are still out there hugging Timmy makes me very happy.

In case anyone is wondering what ever happened to the Ronald McDonald House, well I am wondering too. A few friends expressed some concern that maybe it was too soon for me to be there. I didn't really think so, but I am taking not hearing from them as a sign that it was not meant to be now.

Please keep Genna, Gabbie, Hadley, Valerie-Grace, Brianna, Skyla, Sammy, Luke, Jordan, Kyle and Matthew in your thoughts and prayers as they battle on. Please also remember the angel families; Scott, James, Jacob, Luke, Justis, Kortney and Dani-Ella.

With Love & Missing Timmy,
Susan

Sunday, September 17, 2006 4:38 PM CDT

Dear Everyone,

I believe in true angels,
The kind that Heaven sends,
I am surrounded by angels,
But I call them my friends.

Many people will walk in
And out of your life,
But only true friends
Will leave footprints in your heart.

I want to dedicate the above to all the angels in my life. Besides Jay, Andrew and Jason, I am lucky and grateful to have the most amazing, caring friends. Mary Alice, Sue, MaryPat, MaryAnn, Tara, Vivian, Liz, Diana, Elizabeth, Lisa, Michelle (there are so many). What would I do without all of you. Thank you to my on-line angel friends too. I have often thought about ending my journaling on this website, but the support I get through the guestbook messages helps so much. Thank you Kristin, Susan, Nicole, Kris, Carol (so many, many more) for giving me strength through words, prayers and sharing your deep faith in God with me.

I don’t know what has come over me these last two weeks, but my heart is hurting so much. I physically miss hugging, loving and kissing my boy. It feels like each month that passes by, just confirms the finality of Timmy’s death. It’s so hard to accept it, even though I know. I do know that Timmy is not coming back.

On Monday, September 11th, I went to the cemetery to visit Timmy. Not only was the 11th five months since Timmy passed away, but it was five years after 9/11. Middletown was hit hard by the attacks on 9/11. I believe our town lost over 40 men and woman. From what I saw on Monday at Mt. Olivet Cemetery, I think half of these young men and woman are buried at Timmy’s cemetery. There were many visitors and private memorial services going on. There were beautiful flowers at so many gravesites. I met and spoke to a woman who was visiting her brother. Her brother went down on Flight 93 in Pennsylvania. There is still so much pain five years later.

I know Timmy had many visits this past Monday. Thank you everyone for the beautiful flowers and gifts that were left for him.

Okay, I am just going to say it. I went to a spiritual advisor on Tuesday. I completely trust the friends that recommended her. For some reason I have been feeling drawn to her. I have never done this before and Sara was amazing. She did a tarot card reading and there were many things that made me feel good. Some things I didn’t like hearing or didn’t understand. Overall I left with a feeling of comfort. She taped everything for me.

--She said Timmy said his life was hard work.
--She said that his dying was difficult but his death was easy.
-- I had to tell her about the cancer. She was able to describe the effects the tumor had on him.
-- She said Timmy was healed, strong and with St. Michael (patron saint of police).
-- She said that Timmy’s death was my near death experience and it is to get me to live my life everyday. I have a lot of living left to do.
-- Timmy said he is with me all the time giving me all sorts of gifts. I just do not realize it is him sometimes.
-- She told me I was very close to Timmy…he was like me…we were very connected.
-- Timmy was with our dog “Josh” and she was able to describe him.
-- Timmy had a beautiful smile.
-- Timmy will always be my baby.
-- Timmy had a lot of dreams that he never gave up on. She asked me what all this was about with the police and military. Timmy was thankful to all his police friends.
-- Timmy told me to hold onto my heart, it will be okay.
-- She told me Timmy’s energy was so strong…
-- She saw some college…maybe pediatric nursing in my future.
-- She saw our pool in our backyard and Timmy was doing cannonballs…he is strong on the other side.
-- She said through the reading she kept seeing his beautiful eyes. She asked me about his eyes. He kept saying about his beautiful eyes.
--- Timmy said he had one heck of a life and was giving her the “thumbs up” (Timmy’s picture with the thumbs up).
-- She said that Timmy said he had a wonderful family in this lifetime.
-- She said that Timmy very much honors me and loves me.

It was a half hour reading and so much more was said. I felt a lot of love from my boy during this reading. Most important, my boy is strong, healed and at peace. Timmy is watching over me and sending me signs. I will keep looking for them.

Yesterday, my mom, dad, my brother Tom, his fiancée Joanne and my niece and nephew Kristin and Derek came to visit. We all spent some time visiting Timmy at the cemetery. It was so good to spend some time with all of them. Afterwards we went out for a great dinner together.

My article about September being “Childhood Cancer Awareness” month is being published in the Asbury Park Press tomorrow. This newspaper has a very large circulation.

Timmy’s hug counter will be hitting that 1.5 million very soon. Thank you to my friend Miranda in London, who is working some magic on it.

As always please keep all the children battling cancer and brain tumors in your thoughts and prayers. To all the other angel families, my heart and thoughts are with you all.

With Love & Missing Timmy,
Susan

Sunday, September 10, 2006 6:16 PM CDT

Hi Everyone,

I have been having a rough week. Back to school hit me harder then I expected. On Tuesday, the first day of school, I was very anxious about hearing the bus roar down the block, past my house. I thought if I turned the television up very loud, I would not hear it. I heard it and all the children’s voices too. I hate to admit it but I cried for hours. Another first without Timmy I just need to get through.

Timmy was a child who looked forward to the first day of school. He would have been up and dressed way before the bus came. The last time he had his first healthy day of school (3rd grade) he had to have his hair perfectly spiked. I remember how we would wait for the bus in front of our house. When Timmy would see the bus coming he would start jumping up and down. Before the bus got here (and anyone could see) he would give me such a big kiss on the lips. I never worried about him when he was at school all day. I knew he was happy there. He was happy to be with all his wonderful friends and teachers. The one thing he was never happy about was doing homework. I remember it so well, getting him to the kitchen table to get his work done.

Some of my friends have told me that their children have been talking about Timmy and missing him. One of the nicest stories I was told was about when Anthony and Osiris were walking home from school. The boys were deciding whose class Timmy would have been in. I love that the children miss Timmy and are thinking about him. Please know that I do want to hear what your children have to say about Timmy. It helps me so much.

In my last update, I wrote about September being Childhood Cancer Awareness Month. I felt very strongly about trying to raise awareness, so I wrote a letter and sent it to two of our newspapers. One newspaper printed it already. If you would like to read the article, click here: Article. In my letter I included Timmy’s website. I was worried about doing it because you never know who would visit and if there would be any negative comments. The reason I did it was because I wanted people to see the face of a child with cancer. I know many people have read the article and I am happy with the feedback so far. I want to desperately make a difference and I feel that I have only just begun. It may take some time, but somehow, someway, someday, I will do more.

Something I also feel strongly about is supporting other parents who are going through this brain tumor journey. I follow many children’s websites and always try to leave encouraging messages. I have also met quite a few moms’ who have angel children too. One of those moms, who has become a good friend is Romelle. Romelle lost her seven year old son Scott to a brainstem glioma on February 20, 2004. Romelle and I have met a few times and she is very supportive of me. She is doing good things in honor of her son Scott. Romelle has recently gone back to college to get a degree in social work. She wants to work with sick children and their families. Her particular interest is in hospice care. I admire her very much for what she is doing.

Yesterday, Romelle and I got together to support another mom who lost her nine year old daughter Kortney on April 27, 2006. Kortney also had a brainstem glioma. Kortney’s mom (Kristen) has established a foundation called “The Kortney Rose Foundation”. The foundation is dedicated to raising funds to support research and education related to the treatment and cure of brain tumors. Yesterday was “Kortney’s Challenge” a two mile walk that was attended by over 500 people. It was so good to meet Kristen, but very emotional for all of us. There we were, three moms sitting and talking about our precious children that we lost to brain tumors.

Tomorrow, September 11th, is the day we remember as our nation's greatest tragedy. September 11th will also be five months that my Timmy will be in Heaven.

Andrew and Jason have started school and are doing very well.

I still have not heard from the Ronald McDonald House. I refuse to call them again. I don’t understand what is going on but I will continue to wait.

I joined the gym and have gone only twice. I can’t even begin to tell you how much pain I am in!

As always please keep Genna, Gabbie, Hadley, Valerie-Grace, Brianna, Skyla, Sammy, Luke, Jordan, Matthew, Danny and especially Kyle in your thoughts and prayers as they battle on. Remember the angel families as well. Scott, James, Jacob, Justis, Dani-Ella and Kortney.

With Love & Missing Timmy,
Susan

Saturday, September 2, 2006 2:44 PM CDT

Hello My Friends,

Through many states and cities across our country, September has been declared "Childhood Cancer Awareness Month". I have been thinking alot about how cancer has affected my life.

Never, ever in my life did I ever personally know a child with cancer. Cancer is such an evil disease in anyone, but in a child it is heartbreaking. I remember when Timmy was first diagnosed and a biopsy was performed. I remember being told that Timmy's brain tumor was a low grade cancer. For months I couldn't even say the word cancer. The word just ate away at me. It caused me so much anxiety and unending tears. How and why does a child get cancer? It's an unbelievable fact that cancer is the number one disease killer of children. A child should never have to go through cancer and children continue to be diagnosed with it every day. I honestly don't know if we are closer to a cure. I admire and applaud every family out there that raises money for research. Research will hopefully someday rid the world of this evil beast that takes our precious children away.

Just as important as raising money towards research is raising awareness. More people need to realize that there is a world out there where children of all ages battle cancer so bravely. Alone we can do little; together we can do so much.

If you see someone wearing a gold ribbon, that person probably knows a child with cancer. The gold represents our "golden children" and it is a sign for awareness and a flame of hope that burns for all of them.

It really has been a quiet week around here. This is something that I have yet to get use to. It is hard to believe that on September 11th, it will be five months since Timmy passed away. I miss him so much, but I find myself remembering more and more all the beauty, joy and love that Timmy brought into my life. My therapist was thrilled to see me smile when I spoke of Timmy this past week. I was remembering a time when Timmy was pestering me like crazy, constantly calling me...mom, mom, mom. I finally said WHAT? (in a very impatient way) and Timmy just stood there, looking at me with those beautiful blue eyes and said to me so seriously "I really love you"! Oh how I love remembering the good.

I came upon a beautiful, powerful website that has a short movie called the dash poem movie. Please watch the movie and then continue reading this. The website is TheDashPoemMovie

Watching this movie made me think about what Timmy's “dash” meant in his very short life. Timmy's dash represented a child who was sweet, innocent, loving, and happy. He was a good friend to many. Timmy's "dash" was short but he had such an effect on so many people and the way they live their lives now. Timmy was God’s brave bright light. I am so very proud of him.

My girlfriends continue to be so good to me. Thank you Elizabeth for having all the girl’s over to your home the other night. We talked, laughed and snacked until 1AM in the morning. I feel so lucky to have all of you in my life. We talked about Timmy. They listened to me talk about Timmy. They support me, care about me and encourage me. I know that they will always be there for me. I love you guys!

The effects of Hurricane Ernesto are hitting us hard right now. The rain is torrential, the wind is fierce. Our electric keeps going on and off. There are tree limbs and tons of leaves all around our yard and in our pool. I hope everyone along the east coast is safe.

With Love, & Missing Timmy,
Remembering Him Today With a Smile…..
Love, Susan

Saturday, August 26, 2006 3:44 PM CDT

Hi Everyone,

It is a rainy, dreary, cooler Saturday here in New Jersey. I don’t mind it because we very much need the rain. It is also a good day to do an update.

Like my friend Sarah, I have been feeling very sad lately. I know that what I am feeling is this path of grieving that I have no choice but to go down. Another first without Timmy is about to happen. I see it happening all around me right now. Parents, children all are getting ready to go back to school. I remember last year at this time how excited Timmy was about finally going back to school. We got him the perfect back pack, one that he could pull behind him. He was so excited about that. Timmy loved school. He just loved to be with his teachers and friends. This year will be hard. Timmy’s school bus goes by our house everyday at 8:50AM and then again at 3:20PM. I hear the roar of its engine and the children laughing all the time. It’s like a daily reminder, a very heart wrenching reminder of what I don’t have anymore.

I’ve started looking through the newspapers for a part-time job. I have even been thinking about going back to school. The problem is that I don’t know what I want to do yet. I keep hoping that it will come to me and it will feel right. My therapist thinks I am being too hard on myself. She thinks that grieving is a job in its self, and that I should just take care of myself right now. I think I need to keep busy.

Once again, I called the Ronald McDonald House. I spoke with the woman in charge of bringing in the volunteers. She apologized for not calling me. She said she has been very busy with many things at the house and has not had the time to bring in new volunteers. She told me that they were looking for volunteers and would call me in September. I think they need me.

Last week, I was going through Timmy’s things in his room. I am not even considering moving anything or giving his clothes away yet. Timmy was a major junk collector. He would never throw anything out. His drawers are filled with pens, pencils, flashlights, army soldiers, pokemon cards, stickers, sticks, rocks, stuffed animals, cars and pads of paper. I found his NJ Devils wallet and it had 171 dollars in it. There were many single and five dollar bills, all collected over the years from his grandparents and other family members. I realize now how he never spent his money. One of the most special things I found was a small bunch of 26 post-it papers all written with “I love you, I love you to” on it. I don’t know when he did this. I wonder what he was thinking when he wrote it? I am sure they were meant for me because not a day would go by when we didn’t say “I love you” to each other. These notes are so special to me. I’ve put a picture of them down below.

Andrew and Jason are doing well. Andrew starts his senior year at Quinnipiac University on Monday. Jason starts his senior year in high school on September 5th. I can’t believe they will both be graduating next year. They really do have their whole lives ahead of them and I am very excited for them.

Wow, Timmy’s hug counter is closing in on 1 ½ million.

I am happy to tell everyone that Genna’s MRI came back as stable again. The chemo is working and her doctor, the wonderful Dr. Belasco is thinking about stopping chemo now. This is wonderful news, but also scary news in the world of brain tumors. Wishing you all the best Kristin as you move forward.

Please keep Genna, Gabbie, Hadley, Brianna, Carly, Skyla, Valerie-Grace, Sammy, Luke, Jordan, Matthew, Danny and Kyle in your thoughts and prayers as they battle on. Please also remember the beautiful angel children, Scott, James, Jacob, Justis, Dani-Ella, Kortney and their families.

With Love & Missing Timmy,
Susan

Sunday, August 20, 2006 8:12 PM CDT

Hi Everyone,

We are safely home. Our flight home from London was delayed by six hours. We finally got home at 1AM Saturday morning.

Checking in at Heathrow Airport Friday afternoon was quite an experience. Security was at a very high level. There were British police officers everywhere toting large rifles. If your luggage was unattended, it was taken away. The lines were long and for some reason (random I was told) I was pulled out of the line for a body search. Before we boarded our flight we had to be patted down again and have all our bags searched. I know it is better to be safe but all this extra security made me very uncomfortable. It's good to be home.

Jay and I saw the show "Mamma Mia" Wednesday night at the Prince of Wales Theatre. It was fantastic. The music was great, but so loud that I ended up with a horrible headache for the rest of the night.

On Thursday, I took another bus trip, this one with a tour guide. We did some sightseeing around London again and then took a cruise on the River Thames. On this cruise, I met a young woman from Dubai in the United Arab Emirates. She was very friendly, and also by herself, so we stayed together. After getting off the cruise boat we went into the Tower of London. The Tower was once a prison and then a residence. It has an amazing history within it's many towers. I also got to see the Crown Jewels which belonged to many Kings and Queens. Of course Jay and I ended up the day going out to dinner again.

This trip was good for me and Jay. We needed this time together. Grieving for Timmy has been hard on us. We were able to talk and cry about Timmy. We both know how much Timmy would have loved this trip. We miss seeing things through his eyes. The wonderful innocent eyes of a child.

As I think over this past week, I really am proud of myself. When you lose a child it takes so much emotionally away from you. I have been feeling powerless and not very confident in myself. It was difficult for me to do some of the things I did by myself this week. I knew I had to have strength and face my fears. I need to somehow regain my sense of self so I can try to rebuild my life. I know I will never be the same person that I use to be. I hope to be a better person and make Timmy proud of me.

I still have not heard from the Ronald McDonald House. This is so strange and it makes me wonder what is going on. I will definitely be calling them again tomorrow.

Please everyone keep Genna in your thoughts and prayers. She has an MRI this week. Her tumors have been stable for six months now. I will be thinking of you Kristin.

With Love & Missing Timmy,
Susan

BE WARNED: Boring Vacation Pictures...I did a very bad job taking pictures on this trip.

Wednesday, August 16, 2006 6:13:01 GMT

Hi Everyone,

Greetings from London. It is almost 6 PM London time and I am back resting in my hotel room. My feet are tired from all the walking I have been doing while sightseeing here. This is a perfect time for me to put my feet up, and write an update.

Our flight into Heathrow Airport, London was delayed by three hours on Saturday night. The plane arrived late from London due to additional security at Heathrow. We were also subject to extra security checks at Newark. The most interesting, if not threatening, was the body search by a bomb sniffing dog. Our flight to London was on a Virgin Atlantic 747. I have not been on a 747 for over 20 years. It’s hard to believe a plane that big can fly. Our pilots name was Howard Hughes (funny) – from England. Jay originally had a business class seat but downgraded so that he could sit in premium economy with me. Our seats were on the upper level of the plane. What a fantastic view! The flight was surprisingly half-empty. Jay and I were treated with first-class service. Our flight into London was very smooth.

Heathrow Airport was very quiet when we arrived. We were able to get our bags, get a taxi, and get to the hotel by mid-afternoon. We are staying at a hotel called St Martins Lane . It is a very contemporary hotel. It seems to be the “hot spot” for the younger crowd to hang out in their popular “Light Bar”. Our hotel room is all white with floor to ceiling windows. We have a great view of other hotels, shops and area roof tops. After we settled in, Jay and I did some sightseeing and had dinner in China Town.

On Monday, I set off on my own to do some sightseeing. Since it was cool and rainy, I decided to take the “Big Bus Tour” to see all of London’s highlights. I saw Big Ben, Buckingham Palace, crossed London Bridge and saw so much more from my dry bus window. In the afternoon, when the rain stopped, I took a walk along Oxford Street. Oxford Street is home to some of the most expensive stores in the world. I did a lot of browsing, but did not buy anything. The US Dollar is only worth half of the British Pound making it very expensive here. London is really crowded. I am truly wondering where all the people came from? London was not this crowded 15 years ago. There are so many people in the streets, you must dodge and weave constantly in order to avoid walking into someone. It is exhausting, and honestly it is beginning to stress me out. Jay and I had a nice dinner at a little café “The Inferno Italiano”. The food was delicious.

Tuesday was my day to travel to Oxford to meet Sarah. I left the hotel in the morning, took a taxi to Victoria Station, and boarded the “Oxford Tube”. The tube is a double-decker coach bus. I sat up on top which was pretty cool for this one and one half hour trip to Oxford. I arrived early, so Sarah was not there yet. I have never seen a picture of Sarah, but we had no trouble finding each other. It is so nice to be able to put a face to a name. Sarah and I were both nervous about meeting each other, but we got along great. We did a lot of walking through the cobblestone streets of Oxford. It is a beautiful, historical University City. Sarah did an update on James’ website. She can tell you much more about our day and where we went. She even has links to pictures. James Website

I was very impressed with the buildings that I saw. You got a sense of the city’s history. For lunch we met up with another mom, Kim. Kim lost her beautiful nine year daughter, Bethany, to a brain tumor over a year ago. We went to a local pub for lunch. I had the most delicious jacket potato with melted cheese and ham.

Sarah was wondering what I would write about her, so here it is… Sarah is kind, friendly and easy to talk to. We talked a lot about our boys, our families, and all that we are going through. Thank you Sarah for meeting me and showing me around your little end of the world. It took almost three hours to get back to my hotel room in London. Traffic was horrendous. Jay and I went out to a late dinner at an Angus Steak House restaurant. Once again it was a great meal.

Today I slept in late. I was quite exhausted from yesterday. I ventured out to do some more sightseeing this morning. I walked along a street called “the Strand”. It is also a nice street to shop on (not as expensive). I also took a walk down to the Thames River. You can see Big Ben, the
London Eye , Parliament and so much more from the river. I walked to Trafalgar square and then picked up lunch at a place called “PRET”. They make the best sandwiches.

Did I mention that there is a Starbucks on every street in London. I haven’t gone there since I can have Starbucks anytime back home. I have often visited many other coffee houses. They make the best coffee, cappuccinos, and lattes that I ever tasted, right here in London.

Being here in London is a chance for me to try to go on with my life. It is so difficult to do that when there is such a big void in it. That voids name is Timmy. I have a picture of him on the end table next to my bed here in the hotel room. I talk to him first thing in the morning, during the day and every night. I miss the days when we use to go away and take all three of our boys with us. I would give anything to have that back again. I miss Timmy with all my heart. I still think of him all the time. I still cry for him so much. These trips are good, they are a distraction from hurting, but oh that void.

Jay and I are off the Prince of Wales Theatre tonight to see “Mamma Mia”

To be continued…..

Cheers, Love & Missing Timmy,
Susan

Wednesday, August 10, 2006

Hi Everyone,

I have good news and not so good news to share with everyone. I will start with the not so good news.

The Compassionate Friends meeting last Sunday was awful. Jay and I both went to the meeting. There were four other parents there, all who had lost adult children. One child committed suicide, one was a binge drinker and was killed driving drunk and two were due to sudden illnesses. It had been anywhere from 5-9 years since their children had died. I found out at these meetings that people just like to talk about their children, and what happened to them, over and over again. It was so painful to listen to and very obvious to Jay and I that these people could not get beyond their grief. I asked one mom if she was ever able to find joy in her life again. She said to me with a blank look in her eyes "I can't answer that now, I'm to depressed". I just wanted to run from the room. I came to this meeting with Jay hoping to see that there is light at the end of this dark tunnel. I was not able to find it there. I am sure that all the Compassionate Friends groups are not alike. I know some are very good and helpful. We will not be going back.

As for the good news, (and it is not as good as it was yesterday, due to the scary morning news). I am going to London on Saturday with Jay on a business trip. We are leaving Saturday night for an overnight flight to Heathrow Airport, London. I just recently booked my ticket because I was not sure I wanted to go away again. It was difficult being in Aruba. I just missed being near Timmy so much. After much thought and encouragement, I decided to go. I really am excited, as long as there are no more bomb threats. I plan on sightseeing, going to see some castles and shop, shop, shop. One of the best parts about this trip is that I am going to meet Sarah (James mum). I have known Sarah for over a year through her son's Caringbridge website. James was a smart, witty and amazing 13 year old boy who passed away from a brain tumor three months ago. If all goes well, Sarah and I plan to meet up in Oxford on Tuesday. Oxford is about 1 1/2 hours outside of London. I will hop on a bus, which they call the "Oxford Tube" all by myself, which I am just a little bit nervous about and head to Oxford. Oxford is a very old town with so much to see. Sarah said we could have some tea together. What I find incredible about this meeting is that there is an ocean and many miles between us. The one thing that brings us close, is that we both share the heartache of the loss of our child. I look forward to meeting you Sarah.

Still no word from the Ronald McDonald House. That is a little discouraging. I will call again when I get back home.

I will not be doing any updating for maybe two weeks. When I get back, I will have so much to write about and I promise to take lots of pictures. Please everyone pray that we have a safe flight.

Another child earned his angel wings last week. Jacob was a beautiful ten year old with blue eyes, just like Timmy. My thoughts, prayers and heart are with you Lisa and family. Have I said lately that I HATE BRAIN TUMORS & CANCER!

As always, please keep Genna, Gabbie, Hadley, Brianna, Carly, Valerie-Grace, Jordan, Luke, Kyle and Matthew in your thoughts and prayers as they battle on.

Tomorrow, Timmy will be in Heaven for 4 months (120 days). It still just feels like a very bad dream.

With Love & Missing Timmy,
Susan

PS. To all my friends locally here in Middletown. Timmy's memorial garden at Middletown Village School is in need of some extra watering. Some of the bushes are burned and dying from the intense heat. Please, if you can find some time, grab a few jugs of water and water his garden for me. Thanks so much.

Saturday, August 5, 2006 4:20 PM CDT

Hi Everyone,

Timmy's headstone arrived yesterday and it is beautiful! I went to the cemetery at 10AM. As I drove into the cul-de-sac, I noticed it was there. My heart started racing and my tears just flowed. I approached it from behind and slowly came around to the front. When I saw Timmy's name and picture, I just sat on the grass and cried. I studied every letter and detail. The cross is 24 carat gold-leaf. The angels in each corner of the stone are carved right into the stone. It came out just the way I wanted it to. It looks as though the angels are watching over Timmy. I am a little unsure of Timmy's picture right now. There are some details in it that I am not happy with. I think in time, I will get use to it. About ten minutes after I got there my friend Sue Griffin came by. I didn't know she was coming, but she planned on it to give me support. We both held onto each other and cried together. I love you Sue, thanks for being there for me.

Today is a better day. Jay, Jason and I went back to the cemetery with ivy, mums and mulch and planted a garden around Timmy's headstone. I re-arranged all the gifts that have been left for him. I love Timmy's spot right under the tree (see picture). It is so peaceful there. I now feel good about the headstone being in. It represents a tribute to this beautiful child who loved me and called me mommy for ten years. I love you angel Timmy. I am so proud to be your mommy.

The new song you hear playing is called "Precious Child". Another one to make you cry, but it is fitting for this update. Thank you Kris (Danny's Mom) from California for thinking of me and Timmy, and sending this song.

We still plan on attending the Compassionate Friends meeting tomorrow. I will let everyone know how it went next week.

As always, thank you for your love and words of support.

With Love & Missing Timmmy,
Susan

Tuesday, August 1, 2006 6:21 PM CDT

Hi Everyone,

Grieving is such hard work. Just when I take a tiny step forward, I fall back into the pit of the "whys" and "what ifs". I just miss Timmy so much and I don't understand why this had to happen. I do have good days, easier days, but there is such a hole in my heart. I think the hardest part of all of this is that I am lost. My life has become completely disorganized since Timmy died. Timmy was my reason to get up every morning. I was his cook, his chauffeur, his activities director. I was the one who loved him and kept him safe. My days were so busy keeping up with Timmy's schedule. I loved the life I had with him. It feels like a switch has been thrown and I am left in total confusion on what my role is now.

I am taking small steps to move ahead. I spoke with the Ronald McDonald House and they are reviewing my application. They told me it takes time. I am still exercising and I feel good about that. I see my friends often and go out with them at least once a week. I try so hard to fit in with them, like I use to, but I feel so different. I just don't think I can be the "old me" anymore. I wonder sometimes if I will ever be happy again. I know that is totally up to me. I know my life will never be the same, but in order to honor Timmy, I know I must live my life well.

Jay and I will be attending our first Compassionate Friends meeting this Sunday. Compassionate Friends is a support group for parents who have lost a child. There are many chapters throughout the United States. We have one very close by. This group is filled with parents who have been there. Parents who are at different stages of the grieving process. It is a place to share our pain and our love for our children. I look at this as just another small step for Jay and I to try to move ahead.

Thank you so much to all my friends who showed up to support Alex's Lemonade Stand last week. My last minute phone calls for support brought at least 25 or more friends and their children there. The employees at Blue Tulip were so happy. I was given many hugs and thank you's. I was told that they raised alot of money which included $5,000 from Rita's Italian Ices.

I found out last Friday that Timmy's headstone was on it's way here to Middletown. It was scheduled to be delivered yesterday to a warehouse. I was told it would be installed on Thursday or Friday. This is something that I have waited anxiously for, for such a long time. Now that it is here, I really don't know if I am ready to see it. Timmy's name, Timmy's picture, Timmy's date of birth and death. I know it's just more reality and this reality hurts so much.

Okay, now I need everyone's help. Do I put a picture of Timmy's headstone on his website for all of you to see, or is that to tacky.....Let me know what you think.

I know this hasn't been the cheeriest of updates, but that is why this journal is so good for me. I get to write down everything that I am feeling, and that helps me feel better. I feel so lucky and grateful that many of you are still following along and supporting me. Thank you all for the wonderful messages. They do help pull me up.

As always please keep Jacob, Gabbie, Genna, Hadley, Brianna, Carly, Valerie Grace, Jordan, Luke, Kyle and Matthew in your thoughts and prayers. Wishing strength, faith and love to all the angel families as we continue to grieve together. My favorite dream is of Timmy, Justis, James, Scott, Kortney and all the other angel children running wild, laughing and playing in Heaven.

With Love & Missing Timmy,
Susan

Tuesday, July 25, 2006 9:58 PM CDT

Hi Everyone,

It has been a good week. I don't know what to make of it, but I think my boy is watching over me. In my last update I mentioned how lonely I felt. Well these last two days have been filled with wonderful surprises. I have gotten uplifting phone calls and emails from old friends. Each day at the cemetery, when I have been there, many of my friends and their children have come to visit Timmy. They each told me that I have been heavy on their mind and were hoping to find me there. What a coincidence that everyone came on the same day at the same time. My friend Lisa and her daughter Sami came to visit for a few hours and brought Timmy a "Timmytown" police car and a frog pinwheel. Today I had my first official picnic at the cemetery with Timmy's teacher Susan Gibadlo. Funny place for a picnic right, but it was a beautiful day and it just made me happy. So to all my wonderful friends, thank you for picking me up when I have been feeling so down. Thank you all for your encouragement, love, prayers, friendship and for just sticking it out with me during this difficult part of the journey.

I decided against the gym right now and bought an eliptical machine this past weekend. I feel like a kid with a new toy right now. I am working out a lot. Let's see how long that lasts! The application to the Ronald McDonald House has been submitted. I have not heard anything yet, but hopefully I will soon. Andrew got a job at Target in Connecticut. He will be working in the Electronics Department. They will work with his college schedule, so he is very happy. Jason started working on his "instrument's rating" at his Aviation School. He is also taking an SAT prep class to help him prepare better for his Fall SAT. Jay is doing good, working alot. I see such a sadness in him. He misses Timmy so much.

I just found out today, that tomorrow there will be an "Alex's Lemonade Stand" fundraising event right here in Middletown. Alex was a little girl with a brain tumor who was also treated at Children's Hospital of Philadelphia. Alex passed away in 2004, but her lemonade stands have raised over 6 million dollars worldwide towards pediatric brain tumor/cancer research. The stand will be held outside the Blue Tulip store on Wednesday, July 26th from 5-8PM. Blue Tulip is located next to Whole Foods in the Chapel Hill Shopping Center on Rte 35 in Middletown. I made many phone calls tonight to friends to pass the word on. I will be there at 7PM tomorrow, so if anyone would like to have a cup of lemonade with me, please come by.

Thank you for all the beautiful messages that so many of you have left me me in the guestbook. I love that so many are still checking in. It's amazing, but the hug counter is getting closer to the one and one-half million mark. I will have to think of something special to do with all those hugs when we get there.

I know the song on Timmy's website right now is so sad to hear. I just really need to hear it right now. I will change it soon.

Please keep all the children fighting brain tumors and cancer in your thoughts and prayers. We need a cure!

With Love & Missing Timmy,
Susan

Wednesday, July 19, 2006 6:31 PM CDT

Saturday Night 9/22

There is a new song on Timmy's website. It is called "Who You'd Be Today". The song will probably make you cry. Oh how it made me cry. It says alot of what I have been feeling lately. I love the words at the end of the song. "The only thing that gives me hope...is I know I'll see you again someday....Thanks SC for sending me this song.

Dear Everyone,

Sorry I don't update often, but honestly there is not much going on to write about. It has been very quiet around here. I just don't know what to do with myself most days. My friends are so good to me and always check in on me. We go out whenever possible, but they are so busy with their own families. I started to think of some things I could do to keep me busy, and most of all make me feel better. First, I need to get back to the gym. It was always a part of my life, but for almost the last year and one-half, there was never time for it. I know working out use to make me feel so good, so hopefully I can motivate myself and get going again. Second, I am looking into becoming a houseparent at our local Ronald McDonald House. It is a volunteer job but that's okay for right now. A houseparent welcomes families who stay at the house. You give tours, take reservations and do office work. Most of all they need people who understand what these other families are going through. I do understand. I believe I can be helpful and compassionate to these families. I have my application filled out and I will drop it off soon. My motivation has been awful lately. I need some get up and go.

The weather here in New Jersey has been scorching! It has been 100 plus degrees for the past few days. Finally, we got a break today and it is in the low 90's. Jason went flying on Monday but could only fly for a short while. It was just to hot up there and he didn't feel well after his flight. I think he had some dehydration or heat exhaustion. Andrew is back at college in Connecticut. This old house that he is living in has no air-conditioning. His upstairs bedroom is so hot at night. He went out to buy a small unit, but there were none to be found anywhere. Andrew has also been trying so hard to find a job, hopefully something will come through soon.

I continue to visit the cemetery daily. I am hopeful that Timmy's headstone will come in soon. It has been over three months since it was ordered. Today I opened up a blanket and layed on my back and watched the clouds go by. I talked to Timmy and told him how lonely I was without him, how much I missed him and love him. I wonder what Timmy would have been like at ten years old and healthy. I know he would still be loving his mom, but he would definitely be out playing with his friends alot. He was such an awesome kid!

Recently, I have started giving some of Timmy's favorite toys and his Yankee things to his best friends. I gave his autographed baseballs, Derek Jeter bat and autographed pictures to his best friends Anthony, Osiris and JJ. I also gave his Army Vermont Teddy Bear and other favorite toys to Marianna and her brothers. All of these children were so happy when they got these things of Timmy's. I got the biggest smiles, hugs and thank you's. I have been told by their mom's that this has helped them so much. Not only has it helped the children, but it has made me feel so good. I know that these children will have something of Timmy's that will always remind them of him. I hope to give away some more of his things soon to his other good friends.

As always, please keep Jacob, Genna, Gabbie, Hadley, Brianna, Kyle, Luke, Jordan, Carly (there are so many) in your thoughts and prayers. Also all the families of our angel children.

TO THOSE I LOVED AND THOSE WHO LOVED ME

When I am gone, release me, let me go...
I have so many things to see and do.
You must not tie yourself to me with tears,
Be happy that we had as many years.

I gave to you my love, you can only guess
How much you gave to me in happiness :))
I thank you for the love you each have shown,
But now it is time I traveled on alone.

So grieve a while for me, for grieve you must,
Then let your grief be comforted by trust.
It's only for a while that we must part,
So bless the memories within your heart.

I won't be far away, for life goes on;
So if you need me, call and I will come.
Though you can't see me or touch me, I'll be near.
And if you listen with your heart, you'll hear
all of my love around you, soft and clear.

And then when you must come this way alone,
I'll greet you with a smile and say, "welcome home".

With Love & Missing Timmy,
Susan

Tuesday, July 11, 2006 11:12 PM CDT

Dear Everyone,

We are home from Aruba and it’s good to be home. We had a nice relaxing vacation. Aruba is a tropical paradise. The weather is always hot and sunny. The sand on the beach is soft and white. The ocean is so warm and the most beautiful color of green. The resort was surrounded by huge palm trees that were always swaying with the strong winds. We spent most of our days on the beach or around the pool. Jay and the boys went sailing and jet-skiing. Of course, I did indulge in many tropical drinks. The mango margarita was my favorite.

I went to Aruba with every intention of trying to see and feel Timmy in everything I did. Unfortunately, I just missed him so much. I missed watching him build sandcastles with his dad. I missed hearing him laugh and have fun running in the ocean. I missed seeing his cheeks turn bright red from the heat. When Timmy’s cheeks turned red, his blue eyes just shined…they were stunning. It’s so different when you don’t have a little one around anymore, so strangely quiet. I did my share of crying on this trip.

In Aruba there were so many “just married” couples. They were so happy, so young with their whole lives ahead of them. I found myself thinking of the days when life was that simple and carefree. Never, back then did I ever imagine losing a child. No one ever knows what life holds for them.

While I was away, I read the book “The Five People You Meet in Heaven”. The book was fantastic. It is fiction but it makes you think about the after-life. It makes you think about your life here on earth and how everything we do effects the outcome of others lives. There is one line in the book that I keep thinking about. It said that “fairness” does not govern life and death. If it did, no good person would ever die young. That line helps me a little now when I think of how unfair it was for Timmy to die so young.

Well Timmy was very well looked after (visited) while I was gone. Thank you, thank you everyone. I found a big heart made out of roses on top of his grave. There were a few new trinkets, flags, flowers and many pennies too. Timmy now has a karate bear next to his State Trooper bear. Thank you Claudia and Cathy, it’s so cute! I think the funniest was a strawberry frosted donut wrapped up tightly in a bag. Of course Timmy loved strawberry frosted donuts. I really thought it was from Timmy’s State Trooper friends, but I found out today that it was from my funny friend Sue Griffin. Thanks for the laugh Sue…..

There are a few children that I have had on my mind so much lately. One I have become attached to is named Jacob. Jacob is ten years old, lives in California and reminds me so much of Timmy. Jacob has been undergoing an aggressive chemo to try and stop the growth of his brain tumor. His MRI this weekend showed the chemo is not working and the tumor is progressing. Jacob parents are so strong and have such a deep faith. I think some added prayers and words of support would mean so much to them. Go to visit: jacobfield on the Caringbridge home page. Also, I am thinking of you Susan as you await the results of Jordan’s MRI.

I love you my Angel Timmy, three months in Heaven today. You are so very loved Timmy and so very missed by all your friends and family.

I have included a few photos of some Aruba scenery and sunsets below.

With Love & Missing Timmy,
Susan

Click Here to View Slideshow.

Saturday, July 1, 2006 6:17 PM CDT

Hi Everyone,

Well the Pauxtis family is going away. We are off to Aruba on Monday. It’s been a long time since Jay, Andrew, Jason and I have spent some time together. I know we need this time together to relax and maybe heal a little. We all miss Timmy so much and his absence from yet another trip is heartbreaking. It is my hope to feel Timmy’s presence in everything we do. I hope to feel his love in the warmth of the sun. I hope to see his eyes in the beauty of the blue ocean. I hope to feel at peace when I stand by the ocean in the dark of the night. I hope to remember the good and push away the bad memories for just a short while. I hope the fresh air does us all some good because our bodies and spirit are tired.

Timmy just loved to travel. He especially loved the beach. We were in Aruba once before in July of 1999. Andrew was fourteen, Jason was eleven and Timmy was just three years old. I dug out the old photo album of that trip and posted some pictures below. Wow, what a difference seven years can make. I was definitely a full time mommy then. I miss my boys being little. It was a busy time, but the rewards were worth it. It’s hard to believe how much life can change is seven years. My beautiful Timmy is not here anymore, but I have two grown son’s whose lives are truly just beginning.

It would really mean a lot to me, if my family and friends would go visit Timmy again while I am gone. Tell him his momma loves him and I will be back soon. Thank you so much.

Thank you to everyone who continues to leave messages in the guestbook. The messages still mean as much to me as they ever did.

Please continue to have hope and pray for all the children who battle brain tumors and cancer. I will be thinking of you Jordan, Gabbie and Gracie as your MRI day approaches. For Genna, that her blood counts will stay strong. For Carly and her family who are waiting on MRI results. For Jacob in California who is in the hospital fighting so hard. For all the Angel mom’s and dad’s, that our losses be filled with more and more loving, happy memories.

Off to pack, haven’t even started.

Have a safe 4th of July.

With Love & Missing Timmy,
Susan

Saturday, June 24, 2006 2:21 PM CDT

Dear Everyone,

Love...bears all things, believes all things, hopes all things, endures all things. Love never ends. Never...
...Corinthians

Grief is such hard work. The pain must be felt and I am feeling the pain. I miss Timmy in everything I do and everywhere I go. I seem to cry so much now. I have read that you need to cry for the work of healing to begin. I have been trying so hard to be brave and strong. I know that if I want to begin healing, I have to let the grief flow. My Timmy is really gone. He is physically gone but I still carry his presence and feel his love so deep in my heart.

I want everyone to know that I want and need to hear Timmy's name. I need to hear stories and relive happy memories about Timmy. I have a hard time remembering the before Timmy was sick, so happy stories (especially from Timmy's friends) would be so appreciated.

Well our trip to Florida was a success. I loved flying. Usually I am uneasy with flying, but strangely this time I was so calm. I think maybe because I felt a sense of being closer to Timmy. We visited three colleges. Much to our surprise, Jason liked the Florida Institute of Technology best. It is in beautiful Melbourne and the campus is spectacular! After a tour of the college we met with a professor of aviation. He took us into a conference room to talk. On the table in the room were at least 50 model airplanes. The professor asked Jason to name as many airplanes as he could. Much to my surprise and the professor's, Jason named all of them. Next we went to their flight school at Melbourne Airport where Jason met with a flight instructor. Jason was thrilled when he found out that he was going to go flying with the instructor. Jason was able to fly the plane over the beautiful beaches and blue Atlantic ocean. These visits were so good for Jason. It gives him something good, positive to look forward to.

Just have to mention that Jason made Honor Roll at his high school this year and Andrew made the Dean's List. It has been such a difficult year for both of them but they did such a good job. I am so proud of both of them.

Thank you to all my friends who visited the cemetery while I was gone. It meant so much to me that you were there when I could not be. I found flowers and many other gifts when I got there. Timmy was certainly not alone.

I follow so many children's Caringbridge websites. It upsets me so much to see these children suffering from the effects of tumors and brain cancer. We need a cure! I wish somebody would listen. Please keep Genna, Gabbie, Hadley, Carly, Jordan, Jacob and Kyle in your thoughts and prayers. More then ever the Angel families need prayers. Justis, James, Scott, Trey and Kortney. There are so many.

With Love & Missing Timmy,
Susan

Tuesday, June 13, 2006 4:37 PM CDT

Hello Everyone,

After much delay due to rain last week, we had Timmy's school memorial yesterday under very overcast skies. I must say that everything went perfectly. The garden looked beautiful. My friend Dana Deliso graced us with her beautiful voice again by singing "This Little Light of Mine", "You'll Be in My Heart" and "That's What Friends are For". My friend MaryPat Harrington is a sign language interpreter and teacher. When the children were singing That's What Friends are For, they swayed back and forth and signed along with the song. It was touching and very beautiful. Thank you MaryPat for teaching the children to do this.

At the very beginning of the ceremony, Timmy's cub scout group came out onto the field in their uniforms, and presented us with a plaque. The boys were so nervous but they did a great job. Our principal, Beth Bournias then dedicated the garden to Timmy. She said something so true. The playground was a perfect place for Timmy's memorial to be. Timmy loved the playground, especially the swings and most of all running around with his friends. I said a few words of thanks to all the children. I thanked the children for being Timmy's friend. I thanked them for all the cards and gifts they gave to Timmy. I told them that they made him feel better then any medicine ever did. That is completely the truth. A few of the children were crying. A lot of the moms were crying. We then in small groups of 20 released the balloons into the sky. It was a continuous trail of balloons going up for many minutes. Over 100 balloons were released into the sky into the dark clouds. It was truly amazing because after all the balloons were released and were out of distance, the sun came out. Timmy's Aunt Liz said that Timmy parted the clouds and collected all his balloons. It was truly an amazing sight.

At the end of the ceremony, we gave out little packets of forget-me-not seeds. I told everyone to plant them in their garden. Every year when the beautiful blue flowers bloom they should think of Timmy.

Jay, Andrew, Jason and I were interviewed by two newspapers. They took lots of pictures. One of the articles came out today and I have the link posted below. Thank you to my friend MaryAnn Bonfiglio for arranging for this to be done. I will never get tired of sharing Timmy's story with everyone.

Thank you Sue Griffin, MaryAlice Castaner, Cathy Chakamian, Vivian Palmer and all the other moms who helped in so many ways, especially picking up all those balloons.

The memorial was bittersweet for me. It was a beautiful tribute to Timmy, but the sadness I felt from missing him was so strong. The last thing Jay and I did before going home was to clean out Timmy's desk in his classroom. What can I say...so unbelievably heartwrenching. I am a little down in the dumps today, but I hope to pull myself out of it soon.

We are off to Florida on Father's Day to go look at some colleges with Jason. I will not be doing any updating for at least 2 weeks. I am taking a little break. Hopefully I will have some good things to share with everyone when we get back.

Jason put together a great slideshow of Timmy's school memorial. Just click on the link below.

With Love & Missing Timmy,
Susan

Click here to view the newspaper article.

Click here to view the slideshow of Timmy's Memorial.

Sunday, June 11, 2006 10:48 AM CDT

To My Dear Sweet Timmy,

Two months in Heaven today my angel. I found this poem that says just what I am feeling today.

I thought of you with love today,
but that is nothing new.
I thought about you yesterday,
and the day before that too.

I think of you in silence,
I often say your name.
But all I have is memories,
and your picture in a frame.

Your memory is my keepsake,
with which I'll never part.
God has you in his keeping,
I have you in my heart.

I shed tears for what might have been,
A million times I've cried.
If love alone could have saved you,
you never would have died.

In life I loved you dearly,
In death I love you still.
In my heart you hold a place,
no one could ever fill.

It broke my heart to lose you,
but you didn't go alone.
For part of me went with you,
the time God took you home.

Author unknown.................

I have been thinking about the word "legacy" lately. What will Timmy's legacy be? The dictionary says a legacy is something handed down from the past. Timmy is alive in our families heart, he will live on forever that way. When I started Timmy's Caringbridge website, so many people came to know my Timmy. I hope his legacy will continue through all of you too. The school memorial garden will be a legacy. It will be passed on to so many children and their families for many years to come. I hope that someday I can do more to ensure Timmy's legacy will go on.

Timmy's godmother, Aunt Liz had a wonderful dream about Timmy. She dreamt that she saw Timmy in a very bright room, there were lots of pastel colors. Timmy was about six years old and beautiful, healthy and she said he was so happy. Aunt Liz was there to watch him while mom and dad were taking Andrew to college. She asked him what he was doing and he said with the biggest smile that he was making jelly rolls. They sat together making jelly rolls and Timmy kept looking out the window for me, waiting for me to come home. He was so patient, like he always was. It finally became dark and Timmy went to the window and saw our car coming. I walked up a flight of stairs into the room where Timmy was. Timmy came running to me so happy saying, "mommy, mommy, I have been waiting for you"!

Aunt Liz woke up with tears streaming down her face. Dreams are so symbolic. I believe my boy is happy, healthy again and keeping busy. He is waiting patiently for his mommy to come to be with him.

The rain has stopped and tomorrow looks like a beautiful day for Timmy's school memorial. Once again it is on Monday, June 12 at 2:15PM in the Middletown Village School playground. Andrew, Jason, Jay and I will be there. We look forward to seeing everyone.

With Love & Missing Timmy,
Susan

Tuesday, June 6, 2006 8:25 PM CDT

THURSDAY UPDATE:

The new date and time for Timmy's school memorial service is Monday, June 12, at 2:15PM. Doing it after school now is the best choice since the children now have half days. Because it is after school hours, I was told that I could invite others to attend. So I leave this as an open invitation to friends, neighbors, children, anyone who would like to come by and see Timmy's garden. The weather looks beautiful for Monday. It will be a perfect day to watch over 100 balloons fly off to my angel in Heaven.

Dear Everyone,

Timmy's school memorial service has been postponed until Thursday, June 8 at 12:30PM. The weather forecast for tomorrow is windy and rainy all day. Thursday's weather doesn't look great, but hopefully it will not rain. We just have to have good weather to let over 100 blue and white balloons fly up to Heaven. Timmy loved letting balloons go and watching them fly high into the sky. I imagine that this time he will just be on the other end trying to catch some.

Today was a bittersweet day. Timmy's maple tree was planted and the memorial stone was layed into the ground. Thank you once again to Joe Uras of Uras Monuments and Andy Capelli of Capelli's Nursery's for your generous donation in Timmy's memory. There is also a beautiful bench that was donated by a group of Village School parents. The bench looks as if it were made of tree branches. It fits perfectly into the garden setting. I am not even sure who all the families are that bought this bench, but please know it is so appreciated. Thank you from the bottom of my heart for caring enough about Timmy to do this.

With the help of two good friends, Esther Komjathy and Kathleen Schweizer we turned a corner of the playground at school into a beautiful, peaceful garden that will forever honor Timmy. We planted marigolds around the stone, some blue flowers around the tree. We also planted a small rhododendron bush. Around the bench we layed 5 large stepping stones that just make the whole garden look perfect. In the end we put down 15 bags of mulch. It was a long busy day, and we got so dirty, but I had so much fun.

While we were working in the garden, many children came up to us to ask us what we were doing. The younger ones wanted to know what happened to Timmy. We told them he was very sick and went to Heaven. When they found out I was Timmy's mom some of them became very sad. It was heartbreaking to see this. Some even asked me if Timmy was buried in the garden. Oh how hard the questions can be. How I wish I were not planting a memorial garden for my son.

It's wonderful to know that so many friends are still checking in on Timmy's website. Thank you for your kind words. I do understand it is difficult to know what to say to me. I often have the same problem knowing what to say to all of you.

Thank you Chris McKay for running mile 10 in Timmy's honor at this years Rock N Roll Marathon in San Diego. I believe this is a 26 mile marathon that Chris competes in each year to raise money for brain tumor research. I am so proud that she was wearing a picture of Timmy this year when she ran the race. Thank you for coming into my life Chris and for making a difference in trying to find a cure for brain tumors.

Please keep Gabbie, Genna, Carly, Hadley, Kyle, Luke, Jordan and all the Angel famiies in your thoughts and prayers.

I will update after the memorial. Please pray for some sunshine!

With Love & Missing Timmy,
Susan

Sunday, June 4, 2006 11:51 AM CDT

Dear Everyone,

I've had a song stuck in my head for days now. "Memories, light the corners of my mind, misty water-colored memories of The Way We Were". So many memories of Timmy always being played in my head and felt in my heart. I miss him so much and find that I am crying so much more now. The tears are for happy and sad memories. "Memories, may be beautiful and yet, what's too painful to remember, we simply choose to forget. So it's the laughter, we will remember, whenever we remember...The Way We Were...The Way We Were"....Looking so forward to releasing those sad memories and bringing on the beautiful ones.

Yes, it was my birthday. I am so lucky to have the most wonderful friends who took me out for a fun night. You can't help but laugh when you go out with these girls. We went out to a fantastic Italian restaurant. It just happened to be their $3 martini night. I indulged in their selection of martini's a little to much. Can you imagine drinking a tira masu, chocolate-banana and two caramel-apple martini's? Well my friend MaryAlice and I did and we both paid for it big time for the next two days. Never again!! Thank you Vivian, Elizabeth, MaryAlice, MaryAnn, Tara, Sue, and Laura. You all are so good to me.

My Jason turned 18 on June 1st. Happy birthday Jason. You have so many wonderful things to look forward to. We are all set for our trip to Florida on June 18th. We will be going to Jacksonville University, Embry-Riddle and Florida Institute of Technology. All these colleges have excellent aeronautical programs. Jason is very much looking forward to this trip.

We spent the entire rainy, dreary day in Connecticut yesterday moving Andrew into his new house. This mom is not to happy right now. The house is very old and not the cleanest. Andrew is happy though. He is with a great group of guys and I am sure they will somehow make this place feel like home sweet home.

This Wednesday, June 7th will be Timmy's school memorial. My friends and I have worked together to make it perfect. I hope so much for a beautiful sunshiny day. I expect there will be lots of tears. I hope I can keep it together. I will share the details and post some pictures by the end of next week.

Thank you to everyone who continues to read Timmy's website. It seems like many people have gone away. I still look forward to reading all your messages.

I am so happy to tell everyone that Genna's MRI was rock solid stable. I am so happy for you Kristin and the rest of your wonderful family. Wishing you a fun, worry-free summer together.

I will update soon.

With Love & Missing Timmy,
Susan

Sunday, May 28, 2006 7:54 PM CDT

Dear Everyone,

As I sit here typing this, there are fireworks going off. Happy Memorial Day to everyone, especially our brave soldiers who continue to put their lives on the line for all of us. Personally, I wish they all could come home!

We are all holding on, missing our Timmy so much. I think about him constantly and try so hard to remember the happy, healthy Timmy. It is hard to do that right now, but it is getting better. Timmy is so deep in my heart. I continue to go to the cemetery every day. It really is beautiful and peaceful there. The trees are green, sky is blue and colorful flowers are growing. Everyday as I sit there, I see robins and butterflies. There is even a woodpecker in the tree next to Timmy. Strange, I never would have thought the day would come when I would think a cemetery is beautiful. Even more strange is the sad fact that I am visiting my ten year old son there. Never would I have thought....

Over the past 1 1/2 years we have pretty much been unable to visit any colleges for Jason. On Father's Day, Jay, Jason and I will be flying down to Florida to visit three colleges that Jason is interested in. Another "first" without Timmy. I remember how much Timmy loved visiting colleges for Andrew. He was the first to check everything out. He had so much little boy enthusiasm. I will miss him not being around for Jason's turn. It will be so hard to be away from Timmy for a few days. I would appreciate it so much if my family and friends could go visit Timmy while I am gone. It would mean so much to me.

As if there isn't enough stress in my life. Jason went flying for the first time today since Timmy passed away. He had a fantastic flight with beautiful weather. Jason took pictures today while he was flying. I have posted some below. Yes, I also want to know, how do you take pictures when your suppose to be flying a plane? Ahhh....

Andrew is doing good. He is getting ready to move into his new house for his senior year at Quinnipiac University in Connecticut. Seniors must live off campus and he and four other boys will be renting a house starting June 1st. We will be helping him move in next Saturday. Andrew is my very quiet child. He holds so much in and does not talk about Timmy much. He seems to be okay. I hope so.

The planning of Timmy's school memorial is coming along. I hope everything comes together. I will be checking to see if Timmy's stone is ready this week. Besides his maple tree and memorial stone, there will also be a bench to sit on. My friends and I are so excited about all of this. We will create a beautiful corner in the playground that will forever honor Timmy. The memorial service will just be for the 4th grade students, their parents and all of Timmy's teachers. Once again it will be on Wednesday, June 7th at 2PM.

Thank you to my good friend Lisa Kennedy for coming down to visit me this week. Lisa has been my friend for almost 30 years. She posts here regularly and always has been so supportive. Lisa surprised me with a beautiful, blue crystal, rosary bracelet with three medals on it. The most special medal was of Saint Michael, the patron saint of police. I would like to believe that Timmy is in the care of St. Michael right now. I know that if he is, he is looking over all his State Trooper and other police friends.

Please keep Genna (MRI next week), Gabbie(having a lot of pain from her tumor), Hadley, Carly, Jordan, Kyle and Luke in your thoughts and prayers. Also the angel families, Justis, James, Matthew, Dani-Ella. There are just too many.

With Love & Missing Timmy,
Susan

Tuesday, May 23, 2006 4:08 PM CDT

Dear Everyone,

Just a quick update.

I got the most wonderful gifts yesterday. TIMMYBEARS!! A wonderful woman, Heather Edwards created an organization called "Bear Hugs Bear" in honor of her late son Gage. Heather makes bears from clothing of the child that has passed away. My bears were made from Timmy's camoflauge pajamas and his karate uniform. The bears even have blue eyes. The bears are meant to talk to, cry to, but most of all HUG! Hugging brings so much comfort. I will cherish these bears forever. If anyone would like some more information on these "Bear Hugs," the website is www.bearhugsbear.com.

Today another good thing happened. The wonderful Dr. Jean Belasco from Children's Hospital of Philadelphia took the time to write in Timmy's guestbook. Dr. Belasco is a neuro-oncologist who is an extremely busy doctor. She said she thinks of us often and that Timmy was a brave, special child. I don't think she will ever realize how much her words mean to me.

Dear Timmy,

"I thought of you with love today
But that is nothing new,
I thought about you yesterday
And days before that too.
I think of you in silence
I often speak your name,
All I have are memories
And your picture in a frame.
Your memory is my keepsake
With which I'll never part,
God has you in His keeping
I have you in my heart."

I love you Timmy.
I am so proud of you.
Love, Mom

With Love & Missing Timmy,
Susan

Saturday, May 20, 2006 9:38 PM CDT

Dear Everyone,

It has been a long week. It is so quiet around here. I miss Timmy so much. I just can't get use to this "new normal." I find myself daydreaming sometimes that Timmy is coming home. After all this time apart, how wonderful our hugs and kisses would be. I know Timmy is not coming home...I know.

So many things remind me of Timmy. Every morning and every afternoon, I hear his school bus pass by the house. When I go through the channels on the TV, I see Timmy's favorite shows. I miss watching SpongeBob, Fairly Oddparents and Yu-Gi-Oh with him. One of the saddest reminders is his bicycle. He loved to ride his bicycle. Now it sits in our garage with his helmet hanging on the handle bars. I am trying so hard to deal with all of this, but it is so painful.

I have found some comfort in reading books and poems on heaven, love, and the hope in God's plan for each one of us. I enjoy listening to music, especially Christian inspirational songs by Steven Curtis Chapman. I have also taken the most difficult step of seeing a grief counselor. She is a wonderful woman who I believe will help me learn how to deal with my pain and loss. She will take me right through the grief step by step and hopefully help me heal my broken heart someday.

I continue to visit Timmy everyday at the cemetery. Timmy's grave looks so nice. We planted ivy and petunias. The grass has grown and is very plush and green. There are also many angel statues, a State Trooper Build a Bear, little army soldiers, a toy tank and police car. My wonderful friends continue to call and check in on me. My friend Michelle Mabry treated me to a pedicure this week. Thank you Michelle, you are the best!

A special heartfelt thank you to my friend Susan Amato. Susan sent me a beautiful angel holding a small child who looks so much like Timmy. The statue is called "Love Never Ends." Susan also sent me some beautiful CD's to listen to. These are wonderful gifts Susan, thank you so much for thinking of me.

Andrew and Jason are doing good. Jason went to his junior prom last night. He looked so handsome and had a great time. Andrew is unwinding from his busy college schedule and taking it easy for a while.

Many of you may remember a woman named Connie Yglesias. She signed Timmy's guestbook many times. Connie passed away on Tuesday after a long, courageous battle with cancer. She was only 51. She was a friend and incredible support to me during my cancer journey with Timmy. Connie leaves behind a heartbroken husband and daughter. I know that Connie is in Heaven taking care of Timmy right now.

As always, please keep all the children fighting tumors and cancer in your thoughts and prayers. Special prayers for Genna who is back in the hospital again with some very low bloodcounts and fever.

I will update soon.

With Love & Missing Timmy,
Susan

I found this poem on another child's website.

MY MOM

My mom is a survivor, Or so I've heard it said.
But I can hear her crying when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands upon the beach
That never wash away...
I watch over my surviving mom,
Who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through heaven's open door
I see tears flowing from her eyes.
My mom tries to cope with my death,
To keep my memory alive.
But anyone who knows her
Knows it's her way to survive.
As I watch over my surviving mom
Through heaven's open door...
I try to tell her angels protect me forevermore.
I know that doesn't help her
Or ease the burden she bears.
So if you get a chance, talk to her
And show her that you care.
For no matter what she says; no matter what she feels.
My surviving mom has a broken heart
That time won't ever heal.

Monday, May 15, 2006 4:59 PM CDT

Dear Everyone,

I am so happy that Mother's Day is done. It was not a bad day, but it was a sad day. I went into it with the best most positive thoughts. Yes, I am a mother of three sons, but one was not here, not physically here and it hurt so much. Jay and the boys were good to me. Jay made me breakfast and I got thoughtful cards from all of them. Andrew is finished with college and home now. For the first time since Timmy's funeral, we all went to the cemetery together. Wow, cemeteries are busy on Mother's Day. We spent a bit of time with Timmy and reminisced about some silly things he did. Later in the evening the boys took me out to a Mexican restaurant. This restaurant was one of Timmy's favorites. He loved the chips and salsa. I find it so hard to be out in busy, public places. The noise level and being around so many people just makes me jumpy. I think I just got use to all my quiet time with Timmy. Hopefully it gets better.

I do not believe I got any visible sign from Timmy yesterday to let me know that he was okay. What I did get was a big, heart-shaped balloon tied to Timmy's name plate at the cemetery. The balloon said "Love You Mom" and someone wrote on it, don't worry mom, I'm fine, I'm fine. Thank you to that somebody, it was a wonderful thing to do and it made me happy. I also got gifts from a few of Timmy's friends. I got a rose from Osiris, a card and a poem from TJ, and a Happy Mother's Day phone call from my sweetheart Marianna. So many of my friends called and emailed me yesterday too. I cannot believe all the people thinking and worrying about me. Please just know that all these things helped so much.

I will be meeting with a few friends this week to talk about Timmy's memorial at school. I am looking forward to it so much. Once again it will be on Wednesday, June 7th at 2PM. I will definitely take pictures and post them.

Jay and I also have to start thinking about visiting colleges for Jason. We need to plan a trip to Florida and maybe Arizona to visit some Aeronautical University's. This was something that we were suppose to do with Timmy. He loved to travel and would have loved visiting the all the colleges.

As always keep Genna, Gabbie, Hadley, Kyle, Luke, Matthew and Jordan in your thoughts and prayers. I continue to follow their journey's as they battle cancer and tumors that grow in their bodies. Also remember the angel families. I am thinking of you Sarah, mom to James. My heart hurts for you at this sad time.

I will update soon.

With Love
and Missing Timmy, Susan

Thursday, May 11, 2006 9:08 AM CDT

Dearest Timmy,

One month ago today, the bravest, sweetest, most loving little boy I know earned his Angel wings. Oh Timmy I miss you so much. I miss your smile, I miss your hugs and I miss those beautiful blue eyes looking at me and warming my heart. I am trying so hard to remember the good days. I remember how excited you use to be every morning to go to school. I remember how much you loved to play with your friends. I loved how when you came home from school how you hugged me and kissed me fiercely, had a snack and then went off on your bike to visit your friends. Remember how we use to use walkie talkies to talk to each other? You were so good, you always use to check in with me to let me know where you were. I miss all your friends too Timmy. I miss taking you to karate and watching you do your karate moves. You were so eager to learn and you worked so hard. Most of all I miss the "I love you momma's" that you use to say to me over 100 times a day. I miss your sweet goodnight kisses.

Daddy and Jason miss you so much too Timmy. It is not the same without you around here anymore. There is such a quietness and an emptiness in all our lives. Daddy cleaned up the whole backyard without you last week. Remember how you use to pick up sticks and branches with him? And Jason, well he misses playing video games with you, building lego's with you and just being silly with you. He use to love playing with you and your friends. He misses you so badly Timmy, we all do.

Sunday will be Mother's Day Timmy. I have three beautiful sons who I am so proud of. One of my sons, just happens to be an Angel in Heaven now. I will miss you on Sunday Timmy, but I will celebrate being your mother. I was so lucky, so blessed to be chosen to be your mommy. I love you so very much Timmy. I still feel your love so very deep in my heart. I hope and pray so much that you are healthy and happy, playing with all the other Angel children in Heaven. This is all I want for Mother's Day Timmy. If you can Tim, send me a sign to let me know your okay. I will be watching....

I love you Timmy,
Your forever Mommy, Susan

Happy Mother's Day to all the mom's in my life. To all my dear friends, celebrate this day with your children and hold them close and treasure them. Please give them all an extra hug from me.

I will update soon.

Sunday, May 7, 2006 7:27 PM CDT

Dear Everyone,

It's hard to believe that it is almost a month since Timmy earned his Angel wings. Honestly, it feels like so much longer and I miss him with all my heart. The hardest part is that it is still so vivid in my head the last 12 hours watching Timmy leave us. I still can't believe that I held Timmy's lifeless body in my arms for three hours. I don't think I will ever forget that as long as I live. No parent should ever have to do that, it's wrong, so wrong. I get so angry sometimes, but then the love I feel in my heart for Timmy rescues me and brings me to a better place. Everyone told me that the love that I have for Timmy and that Timmy has for me will carry me through the darkest times. So far it has. He is so very deep in my heart.

I continue to go to the cemetery every day, sometimes twice a day. It is so beautiful and peaceful there. I've met a wonderful woman there named Sharon. Sharon's 19 year old son Luke is buried very close to Timmy. We talk, we cry, and I think we are both really good for each other right now. We understand each other because we have both lost our beautiful sons.

Jay continues to have sleepless nights and is so distant in thought. Jason is so sad. He misses his brother so much. It hurts me to see him hurting so much. Jason took his SAT's this past Saturday morning. I hope he was able to do well. He will be taking it again in June and once in the Fall. At least he has a few opportunities to get a better score. Andrew's last day at college is Thursday, and he will be heading home. I hope he is doing okay. It's so hard to know when I just don't see him.

Timmy's memorial at school is all set for Wednesday, June 7th. It has been decided that a maple tree (like the one Timmy always climbed in our front yard) will be planted. There will also be a beautiful (blue bahama) granite stone about 24" X 12" placed right in front of the tree. The stone will be engraved with "FOREVER IN OUR HEARTS, OUR FRIEND, TIMOTHY PAUXTIS FEB. 29TH 1996 - APR. 11TH 2006." We will also have a balloon release with all of 4th graders, music and some other things still to be decided. I am so glad that everything will be ready in time before school ends. I think this will help bring some kind of closure for all the children.

Thank you so much to Joe Uras, of Uras Monuments and Andy from Capelli's Nursery for donating all the memorial items that will forever honor Timmy. For all of you who live here in Middletown, let me tell you that these are two very kind and generous men.

Once again my thanks and love to all my web friends and my personal friends who continue to be there for me and help carry me through this. Your messages, your phone calls, your taking me out to lunch and especially going to see Timmy with me, help so much. I love all you guys so much!

In closing I would like to share with everyone a beautiful poem written by Timmy's Godmother, Liz Fernandes. Liz read this at Timmy's funeral mass.

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these."

Oh my dear Timmy, in your life I have seen
the kingdom of God.
God gave you a special gift to help us to see
That His love for His children forever would be.
Through your soft eyes of blue, so innocent and true,
We saw a world that was all brand new.
As each day unfolded, filled with wonder and delight,
You played, and learned, and loved with all your might.
For abiding in your sweet, precious soul
Was the goodness of God which made you whole.
You had a special mission on this earth to fulfill,
You touched our lives and gave us strength
to do God's will.
You were meant to be God's brave bright light,
So valiant, so faithful, so cherished in His sight.
And somehow, someway you understood
In a way that we only hope and pray we could.
For in the beautiful simplicity of your days
You taught us in your childlike, gentle ways
To trust in the wisdom of God's plan for each one.
So now you may rest, Tim, for your work is well done.
God holds you in Heaven now, ever so near
Keeping you safe from all pain and fear
And truly we will never be apart
For I carry you always in my heart.
May sweet Angels surround you so you are never alone
Until someday we're together again in our Heavenly home.
I love you forever Tim.

Thank you so much Liz, I will treasure it forever.

Please keep Genna, Gabbie, Hadley, Kyle, Luke, Matthew, Jordan and all the Angel families in your thoughts and prayers and I will update soon.

With Love & Missing Timmy, Susan

Tuesday, May 2, 2006 10:18 PM CDT

Dear Everyone,

Thank you to my dear friend Lisa for the beautiful message in the guestbook today. Yes, today is my 25th Wedding Anniversary. Lisa spoke about my three wonderful sons and mentioned how Timmy was an “extra special” gift from God. The word gift brought back what my eulogy to Timmy was all about. The following was my tribute to Timmy.

In my darkest dreams, I could never have pictured this moment, me standing before family and friends talking about my precious Timmy in the past tense.

I cannot even begin to claim that I have the words to adequately honor Timmy’s life, or describe what a privilege it has been to be Timmy’s mom.

A “gift” is a word that I have used to describe what Timmy has been in my life. Timmy came into my life when I was older. Andrew and Jason were already in school. I was worried about starting all over again but Timmy soon made that worry disappear. From the day he was born, Timmy gave so much love to me and to everyone who was a part of his life. In return, Timmy was so loved. When he was a baby, we got to spend so much special time together. I looked forward to seeing him every morning. I loved holding him, kissing him and gazing into those beautiful blue eyes. Those bright, deep blue eyes will forever be embedded in my memory.

Timmy was a happy, carefree and curious little boy. He loved being with his dad, and his dad loved being with him. Timmy would always be by his side when it was time to fix something he was his dad’s shadow. His curious little mind always needed to know how something worked. Timmy grew into a kind, sweet, and sometimes very sensitive little boy. He had a quiet innocence about him. He would smile so easily and it was a beautiful smile. I have been told by many people that his smile was so contagious. Timmy loved his friends. Most of you remember his first best friend Marianna. In kindergarten, Timmy and Marianna were inseparable; they held hands everywhere they went. It will always be one of my most precious memories in Timmy’s life.

Timmy had two big brothers that adored him, even though his silly antics often drove them crazy. Timmy and Jason were always very close. Jason was Timmy’s favorite playmate. I can still hear Timmy pleading with Jason to play with him, and Jason always would. You were his best friend Jason, you made him so happy, know that and remember that. Andrew there were so many years between you and Timmy, but Timmy looked up to you. You were his big college brother. Remember how much Timmy loved your college. He wanted to go to college too, to be with you. I am so proud of the both of you for all the love and happiness as big brothers that you brought into Timmy’s life.

As Timmy grew older he became fascinated with policemen and army men. He dreamed of becoming a policeman someday. He loved playing video games, riding his bicycle and listening to rock and roll music. He would always bop his head to the music and had the sweetest singing voice. Timmy loved the cub scouts but mostly wanted more then anything to become a black belt in taekwondo. He was so determined, he was almost there. In the end he earned his honorary black belt. I think one of the most important things in Timmy’s life were his friends. Timmy truly cared for all of his friends, and in return he had many close friendships.

When Timmy became sick, he never asked why this happening to him. He never thought about dying. He once told me that he would be fine because children do not die. Timmy was so brave through all of his treatments. Like a trooper he endured three different chemotherapies, six weeks of radiation, many unsedated 1 ½ hour MRI’s, blood transfusions and more. The life he had once known slowly disappeared, but Timmy remained positive. During this time, Timmy missed so much school. He worked very hard for many months with his tutors to catch up. He wanted so much to go to 4th grade with his friends. I was so happy when Timmy was able to return to school last September. Timmy thrived in school. His teachers and his friends were his best medicine. The love and support that the children and teachers showed him made him feel so special.

Timmy was so special…through Timmy’s caringbridge website, his journey, his bravery, his love of his family and our love for him touched many people all over the world. I believe Timmy will be remembered. I believe Timmy’s life has made a difference in the way others live their lives now.”

I have a book that my friend Mary pat gave to me. It is called
“You are God’s Gift to Me.” This book describes exactly how I feel about Timmy. I’d like to read it to you.

“There is a wonderful array of gifts in the world. Clocks, dolls, toasters, pearls, watches, bikes, goldfish and beautiful bouquets of flowers. But the best gift I can think of is you. You whose heart is tender and kind, whose smile I cherish more than the costliest work of art. You are a gift God sent to me, a happy blessing, and answered prayer. Of this I have no doubt. Because nothing but God’s amazing grace could account for the joy of you in my life. Only the Father of lights could send such a treasure as you. Where could you come from, but the heart of the One who is love? If only the words existed that would express all you mean to me…but no such words have been invented? You add joy to my life and color to my world. Sometimes just the thought of you makes me so happy I could cry. Yours is the face I can’t wait to see. Yours is the laugh I love to hear. When the world feels cold, thoughts of you make it warmer. When a day feels dark, the sight of you makes it brighter. The One who sent starlight and fireflies sent you as well. Planets! Butterflies! The moon shining high in the sky! You! All sent from God wrapped up in his Love. I happen to think that you were one of God’s best ideas…You lift me up when I’m feeling down. You make me laugh when I am feeling blue. Not a day goes by, not a single one that I don’t give God thanks for your dear heart, your sweet face, and the sound of your voice. I thank Him for the good gift, the perfect gift, sent from up above. I thank Him for the gift of you!”

Timmy, you have brought happiness, silliness, smiles and so much love into my life. You have taught me the joys of motherhood.

Thank you for giving me the privilege of being your mother for the past 10 years. Thank you for making me a better person.

You are precious Timmy, you are forever cherished. You are so very loved and you will live on in my heart forever. I love you.

Thank you for all the wonderful messages. All your words help us so very much. We are all holding on here, crying many tears and missing our Timmy so very much. I love you my Angel Timmy.

With Love & Missing Timmy,
Susan

Friday, April 28, 2006 7:25 PM CDT

Dear Everyone,

I am so taken back by the many requests not to end my journal now. I made the decision to end it because I felt since Timmy's journey was over, it was time for closure. I wanted to remember the love and support given to all of us, and not watch everyone go away. I see that friends are still coming back to see how we are all doing. I have decided to continue the journal for just a while longer. My updates may be infrequent, but I have become attached to all of you too. Hopefully, I can gain strength and encouragement as I go through this terrible grieving process.

Grief, my grief has become an intensely physical thing. As the numbness wears off the pain increases. My whole body misses Timmy. My pain is heavy in my chest. I have a hard time doing much of anything because thoughts of Timmy crowd out everything else in my mind. My sleep is broken and filled with dreams I do not remember. About a minute after I wake up in the morning, my heart starts racing. I miss Timmy so very much, we all do.

I feel so bad for Jason and Jay. I get to sleep in, in the morning, but they must get up early and go to school and work. They are both having a difficult time resuming their routines. Andrew is at college and we talk every day. He sounds so sad. School will be over soon for him and then we can all be together again.

This past Wednesday, Timmy's cub scout den went to Poricy Park here in Middletown to plant pine trees. The trees were dedicated to Timmy. There must have been about 20 boys there planting trees. Timmy now has a small forest dedicated to him. It was so difficult for me to be there. I wanted to be there for the tree dedication, but I did not realize how hard it would be to see all the boys again. I had a hard time getting out of the car. I cried and my heart raced. My wonderful friends held on to me and helped me get through it. Many of the boys gave me hugs. Those hugs felt so good! I continue to get the most incredible support from so many people. The phone is always ringing and someone always wants to be with me. Once again I am so grateful.

I am in the process, along with some friends on planning a memorial at Timmy's school. Right now I am thinking of a small garden, with a tree and a memorial rock. The rock will have a plaque on it. I hope to get all the 4th graders together and have a very special tribute to Timmy. I want to have a balloon release and if all the 4th graders do it, there will be over 60 balloons taking flight.

I visit the cemetery every day, sometimes twice a day. My connection with Timmy right now is at home and at the cemetery. Timmy is buried under a beautiful tree and I feel so much peace there. I often find beautiful lawn ornaments and gifts left for Timmy. I love that people are thinking of him and visiting him.

Something happened that I would like to share with everyone. The other day on my way to the cemetery, I allowed a woman to make a turn into a convenience store. She overturned and needed to back up, because of this we missed the light. As I pulled up to the light, a car pulled up next to me and the guy in the car called me a **!!@@ moron! I was stunned, shocked and then became very angry. I started yelling at the guy that I just buried my ten year old son two weeks ago and that he was calling me names because he missed a light! I am sure he thought I was crazy but I didn't care. Some people think that life is so tough, but they have no idea, no idea.

I have included some pictures below of some of the wonderful moments during Timmy's funeral procession. I love you so much my Angel Timmy.

With Love & Missing Timmy,
Susan

Sunday, April 23, 2006 3:39 PM CDT

Dearest Family & Friends,

It is time to write, before I forget all the wonderful details of Timmy's funeral.

Last Monday and Tuesday were two of the most beautiful, warm, sunshiny days that there have been in such a long time. I wanted everything perfect and indeed everything was. Our boy was given a tribute that honored him and showed an outpouring of love for him. I will hold onto the beauty of it forever.

Timmy's visitation on Monday went very well. I must start by saying that the New Jersey State Police on their motorcycles and the Middletown Police stayed outside the funeral home all day to be there for Timmy and our family. The afternoon was busy, but I was able to meet everyone. Yes, I did hold it together. I was so proud to be Timmy's mom and I was determined to hold it together for him. So many people I did not expect came to see our boy. Thank you Nicole, Sylvia, Kristin, Grace, Cassie, Peggy, Hugh, Kelley, Chris and Carol (for trying, but got lost) for traveling in to see Timmy and our family. I believe every teacher from Middletown Village School was also there. Also, Timmy’s police officer friends from the Oradell Police Department. The nurses from the Visiting Nurse's Association were there. Timmy's pediatrician's Dr. Harmady and Dr. Edman and their staff were there. So many moms’ who are also dear friends of mine were there. Some of Timmy's classmates dad's even took the day off to be there for us. There were people from other towns that followed Timmy's website and came to pay their respects too. Timmy received many beautiful floral arrangements. The best two were made in the shape of a police badge.

The evening visitation was truly crowded. So many more people came back again. Thank you so much to the Briody and Russo families for coming, it was so good for Jay and me to see you again. Many of Jay's co-workers from Goldman, Sach's were also there. Also, friends from Middletown Taekwondo and the Monmouth Council of Boy Scouts. I tried so hard to keep our family together to greet everyone, but we always ended up getting lost in the crowd. Thank you so much to my niece Kristin who did a wonderful job of giving out the bookmark-Mass cards. Our out of town family from the West Coast included Dr. Greg Pauxtis from San Francisco, Richard, Cody and Kelsey Pauxtis from Oregon and Jim Briody from Washington State. All in all hundreds of people came to pay their respects to Timmy and our family.

We arrived by limousine the next morning for services at the funeral home. We all got to say our final goodbyes to Timmy and so many tears were shed. The finality of this goodbye hurts so much.

During the final goodbyes many New Jersey State Troopers, police officers from the NYPD Emergency Services Unit, Middletown police, and police officers from other towns lined up and did a walk by Timmy's casket paying their respects to him. I had no idea so many police officers would be there. It was an incredible honor for Timmy and our family. Timmy would have loved it and we were so very proud.

There is a special blanket that has been in our family since Jason was a baby. It had become Timmy's blanket and he use to love being wrapped up in it. It always made Timmy feel so safe and comfortable. I covered Timmy from his feet to his neck with the blanket, like I was tucking him in at night. I kissed him goodbye and I cried so much as I left the room.

What followed next was something none of us ever expected. As we left the funeral home we saw motorcycles and police cars all over the place. Timmy was to have the biggest and grandest escort to the Church. We waited by our limousine as we watched four of Timmy's NJ State Trooper friends, wearing white gloves, respectfully carry Timmy's casket out of the funeral home and into a NJSP Suburban truck. The Suburban had a sticker in the rear window that said "Hero."

As we arrived at the Church, so many people were waiting outside. The New Jersey State Troopers once again carried Timmy's casket into the Church and we all followed behind. Timmy's Mass was extraordinary! It was a beautiful tribute to a beautiful little boy. Andrew and Jason both did a Gospel reading. Greg Pauxtis did the "Prayer of the Faithful." My friend Dana Deliso, who has the voice of an Angel, truly made Timmy's Mass so special. She sang every song beautifully, from deep within her heart. She sang a special song to Timmy from me "To Where You Are," by Josh Groban during the eulogies. Thank you Dana from the bottom of my heart. Thank you to Monsignor Walsh for allowing us to have this Mass our way and for your beautiful Homily about Timmy. I wish I could have recorded it.

I must admit to being quite shaken up when it came time to read my eulogy for Timmy. My legs were shaking so badly in the Church pew; I had to hold them down. I was determined to get through his eulogy and I did. My voice cracked a few times, but everyone heard and everyone felt the deep love that Timmy had for us and us for Timmy. There were also eulogies by Timmy's Godfather, Thomas Antonelle; Timmy's Godmother, Elizabeth Fernandes; teachers, Roseanne Silverstein and Susan Gibadlo. The final eulogy was given by an extraordinary friend and woman, Laura Puck. I did not hear the tears, but I was told there were so many.

After the Mass it was time to head to the cemetery and that is when the biggest funeral procession I have ever seen started. It must have been more then a mile long with so many police cars and motorcycles with all their lights flashing. The Middletown Police got out of their cars and shut down intersections and stopped traffic so we could all get through. These wonderful police officers even saluted Timmy and us as we drove by. We drove past Timmy’s school and our house one last time. As we sat in the limousine we all knew Timmy had to be smiling down on all of this and loving it.

When we arrived at the cemetery it took a few minutes to get everyone and everything together. All the police officers lined up, at attention, on two sides. The Troopers carried Timmy’s casket down the middle as our family followed behind. There were so many people at the cemetery. The sun was shining so beautifully and the birds were singing. Everyone noticed that as Timmy’s casket was set down a wind picked up out of no where. Two canopies were set up with chairs for the family to sit in. Monsignor Walsh did a small prayer service. When he was finished, like clockwork, a New Jersey State Police helicopter flew low over Timmy’s services. I think most people were surprised because I heard so many aaahhh’s in the crowd. I know I jumped out of my seat and ran out onto the grass to watch them. It was unbelievable, a perfect final tribute to our Timmy. As we left, everyone placed blue carnations on top of Timmy's casket. There also were two police officers who played “Amazing Grace” on their bagpipes. It was beautiful!

After the graveside services, we were given yet another escort home by the New Jersey State Troopers on their motorcycles. We invited everyone to come back to our house to have something to eat. I was thrilled when I got the Troopers to come in to have a bite to eat. I must thank my good friends Freddie Fernandes and Jacques Caterer’s and Maria Petersen and Indulgence Cafe for bringing us all this food. They came back to the house and worked so hard getting everything ready for us. There was so much food and so many people. I was so exhausted, but seeing everyone there who cared for us and loved our Timmy made me so happy. For those of you who were not there, guess what we had for dessert? Lots of cheesecake of course!

This past week has been filled with more downs then ups. I have cried so many tears, we all have. So many people are hurting from missing Timmy so much. My boy has touched so many lives and something tells me he always will. I have been to the cemetery every day to visit Timmy, we all have. His flowers from the funeral have now been replaced with sod. He has a temporary marker with his name on it, a few Angels, flowers, his communion picture and lots of pennies left by people who have visited. Jay and I ordered Timmy’s memorial stone last week. It will take months to be ready.

I know we all have such a long road of grieving in front of us. I have many wonderful friends who will be there for me, for our family. I miss Timmy so much. I feel so much love in my heart for him. I know that with all my heart Timmy would not want me to be sad, to hurt or to be angry. Angry will only make me a very bitter person. I hope that I will not go there.

Tomorrow Jay will go back to work. Jason will go back to school. Andrew is already back at school. I think my boys will be okay. It’s early yet, but I hope so. Tomorrow will be the first day for me all alone. I don’t like this, not at all. I know I must find something to do with myself, but not right now. Time will tell.

Thank you everyone once again for all your love and support during Timmy’s journey. I have said it so many times that I could not have done it without all of you behind me. For this my friends, I will forever be grateful.

I do plan on doing “one last update” in Timmy’s journal. I am not sure when, but it will be soon. I just think it is the right thing to do now. To all my friends who see me outside, in a store, anywhere. Please just give me a hug, words are not necessary. Hugs make it so much easier on everyone.

With Love & Thanks, Susan “Proud & Loving Mom to Angel Timmy”

Thursday, April 20, 2006 11:35 AM CDT

Dear Everyone,

Timmy's funeral was a perfect, beautiful tribute to his life. I am having trouble finding the words to update right now. Instead, I would like to share a video that we showed at Timmy's visitation. I love you and miss you so much my Angel Timmy.

Thank you Jason for uploading this video for me.

With Love & Missing Timmy,
Susan

Friday, April 14, 2006 6:46 PM CDT

SATURDAY 10:30PM UPDATE;

It was a good day. I saw my boy today and he was beautiful. I feel as if a great weight has been lifted off my shoulders. I cried tears of happiness when I saw him. I missed him so much. He looks like a beautiful Angel sleeping. I so look forward to seeing him again on Monday. Happy Easter.

Dear Everyone,

The days continue to be so difficult to get through. I physically hurt with pain from missing Timmy. We are keeping so busy though, making arrangements, putting together many photo collages of our Timmy. Looking at pictures is hard. All these pictures are of Timmy before the brain tumor. They are happy memories and I try so hard to remember them. I want them back so much. Unfortunately right now watching Timmy die is what I remember the most. I am told that someday the happy memories will replace the sad ones.

Yesterday, Jay and I went to Sandy Hook Beach. It was a beautiful, hot day here. We took two blue daisies with us which we threw in the ocean for Timmy. We sat on the beach and remembered Timmy and spoke to him. In the distance there were lightning bolts and the darkest clouds. I said to Jay that I hope Timmy was not mad at us.

Tomorrow our immediate family will get to see Timmy at the funeral home for a short while. Since we have to wait such a long time for his visitation and funeral, due to the Holy Week, they are allowing us a short visit. I can't even begin to say how nervous, scared and also anxious I am to see Timmy again. I hope it all goes well. I hope I do okay.

We also have some family flying in this weekend from California, Oregon and Seattle. We will be making a few trips to the airport. It will be good to see everyone again.

Andrew and Jason are doing okay. They are so sad and seem so lost. I know this is so hard for them.

It will be so busy over the next few days. I hope to share the details of Timmy's funeral with everyone some time next week when things have settled down.

Thank you so much for the continued love and support for our family. Your messages mean so much to us at this time. I am so proud of Timmy. This child has brought so many wonderful people into our lives.

With Love & Thanks and Very Much Missing Timmy,
Susan

I have included a link to Timmy's obituary below. Also the Visitation and Funeral arrangements again.

Timmy's Obituary

I would like to ask family and friends that instead of flowers that donations to be made to one of the following organizations:

Timothy Pauxtis Memorial Fund
American Brain Tumor Association
2720 River Road, Suite 146
Des Plaines, IL 60018

or

ToysCalm
PO Box 153
Little Silver, NJ 07739

Laura and Erin Puck of ToysCalm have been so kind and generous to Timmy and our family throughout our very long journey. Their website is www.toyscalm.org

or

Jason's Dreams for Kids
20 Monmouth Street
Red Bank, NJ 07701

Dennis McGinnis is the founder of Jason's Dreams for Kids. Dennis has been an incredible support to our family throughout Timmy's illness. Their website is www.jasonsdreamsforkids.com

Visitation for Family & Friends:

Monday, April 17th from 1-4PM and 6-9PM

John F. Pfleger Funeral Home
115 Tindall Road
Middletown, NJ 07748
(732) 671-1326

Funeral Liturgy Mass:

Tuesday, April, 18th 10:00AM

St Mary's Roman Catholic Church
26 Leonardville Road
Middletown, NJ 07748

Click Here for Directions

Wednesday, April 12, 2006 11:59 AM CDT

Dear Everyone,

This last day and one half without Timmy has been so difficult. I have cried so many tears and my heart aches so much. My life was all about Timmy for so long now. I just don't know what to do with myself right now. I miss him so very much. I keep waiting for him to tell me "I'm fine mom, I'm fine." I hope I hear it some day soon.

We had a lot of family and friends over yesterday. Food was in abundance. Thank you everyone so very much. The next couple of days will be busy planning the best memorial for a beautiful boy. I will include Timmy's Visitation and Mass information below. I would just like to share with everyone who won't be there that Timmy will be honored greatly. He will have his New Jersey State Trooper friends involved in every part of his services. They will be his pallbearers, they will carry his casket in a marked NJSP vehicle. He will also have a motorcycle police escort and many other police cars from different towns to be part of his procession. If all goes well there will also be a police helicopter escorting us to the cemetery. It will be special. I will make sure of that.

I would appreciate lots of blue (Timmy's favorite color)or other colors to be worn to Timmy's visitation and funeral. Black is just to sad and I want to celebrate Timmy's beautiful, loving life.

There will be a memorial service in honor of Timmy sometime in the early summer at Middletown Village School. I would so appreciate that the children remember Timmy then, and not be brought to his visitation services.

I would like to ask family and friends that instead of flowers that donations to be made to one of the following organizations:

Timothy Pauxtis Memorial Fund
American Brain Tumor Association
2720 River Road, Suite 146
Des Plaines, IL 60018

or

ToysCalm
PO Box 153
Little Silver, NJ 07739

Laura and Erin Puck of ToysCalm have been so kind and generous to Timmy and our family throughout our very long journey. Their website is www.toyscalm.org

or

Jason's Dreams for Kids
20 Monmouth Street
Red Bank, NJ 07701

Dennis McGinnis is the founder of Jason's Dreams for Kids. Dennis has been an incredible support to our family throughout Timmy's illness. Their website is www.jasonsdreamsforkids.com

Visitation for Family & Friends:

Monday, April 17th from 1-4PM and 6-9PM

John F. Pfleger Funeral Home
115 Tindall Road
Middletown, NJ 07748
(732) 671-1326

Funeral Liturgy Mass:

Tuesday, April, 18th 10:00AM

St Mary's Roman Catholic Church
26 Leonardville Road
Middletown, NJ 07748

Click Here for Directions.

With Love, Thanks and
Missing Timmy, Susan

Tuesday, April 11, 2006 5:48 AM CDT

Dearest Family & Friends,

It is with a broken heart that I must tell everyone that our Timmy passed away this morning at 4AM. In the end it was a peaceful passing. I will update with more information when I have it.

Thank you everyone for all your love and support.

Love,
Susan, Jay, Andrew, Jason & Angel Timmy

Monday, April 10, 2006 1:52 PM CDT

Dear Everyone,

Yesterday, Timmy started having some bad congestion in his chest. The noise sounded like a percolater and you could feel it in his chest. It really made me nervous because it looked like he was in distress. There is a medication called Levsin that is for excess secretions. The medicine is placed under the tongue and absorbed. Between the Levsin and putting Timmy on his side, the congestion cleared up. It started again in the evening but with the help of the Levsin, it cleared up. Timmy once again had a very peaceful night with mom curled up next to him.

This morning as Jay and I were cleaning Timmy up, I saw Timmy opening up his eyes a little. He was looking at me and I could see he was following me around with his eyes. That made me so happy because he was a little alert. I don't get much interaction with Timmy anymore and I miss him so much. Just opening his eyes, as simple as that was just a wonderful moment.

Our hospice nurse Peggy was here for a few hours today. She needed to change some of Timmy's IV medications. Most of Timmy's vital signs remain about the same. It is so hard to believe Timmy has not eaten in nine days and has barely had anything to drink. This upsets me so much. I notice that his body seems thinner, but his puffy cheeks remain.

Timmy is so peaceful. I have been told that Timmy is getting glimpses of Heaven in his sleep. I love to believe that. So many people have told me that they have prayed to their loved ones to be there for Timmy when he gets there. Timmy's grandparents are all still here with us. I don't know how it works, and it may sound silly, but I just want him to know someone when he gets there.

Timmy continues to write his own story and I am so happy that I have all these quiet moments with him. I think Timmy knows his mom needs to be filled up with moments before he goes.

Jay has decided to work from home for a while. Jason is on Spring break from high school and Andrew went back to college. I feel so bad for him, I know he wants to be here but he has so much work to do at school too.

With Love & Thanks, Susan

Sunday, April 9, 2006 11:58 AM CDT

Dear Everyone,

Our Timmy made it peacefully through the night last night. His heart rate sometimes climbs into the 140's now and his respirations are about 12-16 per minute. He has not opened his eyes at all since yesterday. Timmy is so comfortable and pain free. For a child that has been in a hospital bed for over two months, his skin is beautiful and free from any bed sores. I am meticulously clean with Timmy. He gets washed up and changed everyday. He looks so beautiful.

Our hospice nurse Sandy is here with us right now and will stay for a few hours. The IV nurse, Julie will be coming by to change Timmy's medicines soon.

I don't understand why our boy continues to hang on when his body is so tired. I am sure there is a good reason and hopefully someday I will know what it is. For now I am enjoying him and loving him. By the way, I curled up with Timmy and slept with him all night in his hospital bed. I kept my hand on his heart all night, feeling it beat. I slept and feel so peaceful today.

Thank you all again so much for being there for Timmy and our family. Our prayers are keeping him peaceful and comfortable and I pray that he is having the most beautiful dreams as he sleeps.

I will update soon.

Loving Timmy, Susan

Saturday, April 8, 2006 2:33 PM CDT

Dear Everyone,

Timmy made it through another night very peacefully. I am in awe of this child, his strength and determination continue. Today Timmy's face is much paler. His respirations have increased now to about 16 per minute. His pulse is still high in the 120-130 range. What is different today is that he has not opened his eyes at all when I have talked to him. Today will be seven days with no food and little to drink.

Our hospice nurse Peggy came over for a few hours today to take care of Timmy and change his IV medicines. We also met Sandy, the nurse that will come by to take care of Timmy tomorrow. We plan on going it alone again tonight, without a nurse, as long as Timmy remains comfortable.

The uncertainty of everything surrounding when Timmy will pass is weighing heavy on our minds. Next week is Holy Week in the Catholic Church. There can be no funerals masses from Holy Thursday until Easter Sunday. In all reality, we may not be able to have any services for Timmy until the week of April 17th.

We are all together today on this windy, rainy Saturday. The boys are sitting and talking to Timmy right now. It will be a quiet rest of the day.

Thank you Carolyn for the wonderful dinner you made for us last night. Penne with vodka sauce is Timmy's favorite meal. Even though Timmy could not eat any, I rubbed some sauce on his lips.

Please keep Timmy in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

Friday, April 7, 2006 7:09 PM CDT

Dear Everyone,

Tonight, Timmy remains pain free and comfortable. His condition has not changed much since this morning. His heart rate continues to be very high and his respirations are low. We managed to get a little bit of juice or soda into him today with a tiny syringe. His breathing is still raspy, but he is in no distress. I just don't know how much longer he can go on like this.

Our hospice nurse Peggy stayed with us until 3PM today taking care of Timmy. There is a good chance we will go it alone tonight without a nurse. The night nurse thinks we will be fine and will be here quickly if we need her. The Palliative Care Team at Children's Hospital called us twice today to check in on how we were all doing. They are also on call 24 hours a day and are only a phone call away.

Andrew made it home safely today, but is feeling so poorly. Our whole family is together now, maybe that's what Timmy is waiting for. I am so tired, but I will take as many more peaceful days that Timmy wants to give me.

Once again, thank you for all the beautiful messages and for continuing to follow Timmy's journey. We certainly are burning a lot of candles!

Love, Susan

This poem was mailed to me. It is so beautiful and so appropriate for the place we are right now with Timmy.

Angel Chrysalis

Spring is announcing itself all around me;
Snow is melting
Outside signs of life
Budding trees, grass remembering it's green
birds crooning love songs.
And I sit inside, next to you
As you begin what some will call
your long walk towards death.
But I know better, for I have been given the honor
to bear witness to the birthing of your wings.
I have watched you now for days,
as the crystalline webbing is spun about you
And if I look, with soft eyes
I can see the ethereal threads of light.
And if you turn your head away from me as I try to give you
a sip of water or a bite of food, I am not offended,
For I know you are drawing your sustenance elsewhere.
From that place that seems beyond the density of
earth that yet surrounds you.
And if do not seem to hear my words
I draw comfort that you are pulsing to the rhythm
of divine sounds, in order to synchronize
the fluttering of your wings.
Some may focus on how your body has withdrawn into itself,
But I am watching how you are forming your wings.
Within that cocoon of light, how they are
growing and growing.
And I know that as you rest with your eyes closed,
you are testing the strength of those wings.
Until that time when you will no longer
be able to hold back
And you shall take wings and soar, soar, soar.

Friday, April 7, 2006 10:21 AM CDT

Dear Everyone,

Timmy made it through the night with much comfort and peace. We all managed to get a little sleep last night while a nurse stayed awake and watched over Timmy. Timmy is in no pain. This morning he had a few minutes of wakefulness when I called his name and he opened his eyes. He is so very tired.

Our hospice nurse Peggy is here with us right now watching over Timmy. She will stay the day with the plan to have a nurse here again tonight. Timmy's respirations are down to 4 and his heart is racing. His pulse is 130. His body is pretty cool all over. It's hard to believe that he has not eaten in six days and has not had much to drink either.

Jay and Jason are home today. Andrew will be home soon. I will spend the rest of the day curled up next to Timmy.

I have been getting numerous emails and phone calls from people who are so torn because they will not be here next week. It is spring break here in New Jersey and most families, friends and teachers are going away. I do understand and I am trying not to let it bother me, but I do feel bad too. I so want all the people who love Timmy and our family to be there for him, for us. Maybe Timmy chose it to be this way for some reason. I know we will be in everyone's thoughts and prayers. We will be okay.

Someday, in the early Summer, I would like to have a memorial at Timmy's school. This way the children and everyone else who cares for Timmy can be there.

Timmy amazes me, he is doing things his own way. I love him so much and I am so proud of all he has done in his short life. I am so proud that so many people have come to love him, and will truly miss him.

I will try my best to update again later in the day.

With Much Love & Thanks, Susan

Thursday, April 6, 2006 3:53 PM CDT

Dear Everyone,

Just a quick update while I have a few minutes to myself.

The IV medications have kept Timmy pretty much out of it since they were started yesterday. I have not gotten any awake moments with him, but I have been laying with him, holding his hand, stroking his head and giving him some beautiful dreams to dream about. My friend Sonya told me to tell Timmy that he could be a policeman in Heaven giving out tickets to all the speeding Angels. I told him that one today Sonya.

Timmy is so pale and the circles under his eyes are deeper and darker. His lips seem blue to me. His pulse is very rapid and irregular. Our hospice nurse Peggy was not able to get a blood pressure today. His breathing is raspy and he has periods of apnea for about 20 seconds. Peggy came this morning and stayed with us till 4PM. We will for the first time have a nurse stay with us all night tonight.

Everyone is home except Andrew. He has not been feeling well and hopefully he will be able to get home tonight or tomorrow.

I expect it will be a long night for all of us.

I wish there was another word to say other then "thank you" all the time, but our whole family is so thankful for all the love and support everyone is giving us. We truly are leaning on all of you for strength, and I know that soon, we will need you all more then ever.

Keep those candles burning and prayers for peace and comfort for our Timmy.

I will update soon.

Love, Susan

Thank you Kathy Lettieri.

A poem by Hans Christian Andersen written in 1825.

Mother, I'm so tired, I want to sleep now;
let me fall asleep and feel you near
Please don't cry-there now, you'll promise, won't you?
On my face I felt your burning tear,
Here's so cold and winds outside are frightening,
but in dreams-ah that's what I like best;
I can see the darling angel children
when I shut my sleepy eyes to rest.

Mother, look, the angel 's here beside me!
Listen, too, how sweet the music grows.
See, his wings are both white and lovely;
surely it was God who gave him those.
Green and red and yellow floating round me,
they are flowers the angel came to spread.
Shall I, too, have wings while I'm alive, or-
Mother, is it only when I'm dead?

Why do you take hold of me so tightly,
put your cheek to mine the way you do?
And your cheek is wet, but yet it's burning-Mother
I shall always be with you...
Yes, but then you mustn't go on sighing;
when you cry I cry as well you see.
I'm so tired-my eyes they want stay open-
Mother-look-the Angel's kissing me

Wednesday, April 5, 2006 7:13 PM CDT

Dear Everyone,

Thank you so much for all your messages of support and encouragement. I cried some more reading all the beautiful messages. All your words make so much sense in my head, but my heart is going to need some more time.

Timmy did have his port accessed this afternoon and it went well. I used the Emla cream to numb the port area, which always works so well. The IV therapist did a fantastic job accessing the port, she got it right away. The IV therapist hooked up two pumps that look like a computerized gameboy. The morphine is in a cassette that is placed inside the pump. The ativan is in a small bag outside the pump. The medicines are layered and will be given at different intervals of time. The cassette and bag will need to be changed every 24-48 hours. These pumps are enclosed in a small fanny pack and are lying on a table next to Timmy's bed. There are two alarms that may go off. One is for low batteries, the other is for a crimped tube. The pumps are surprisingly quiet, only making a humming noise when the medicine is being delivered. Timmy will not be wearing the fentanyl patch anymore, the morphine has been increased. Also we are going to slowly wean him from the decadron (steroid) and now give it to him in gel form. I can rub it in on his arm. There are no more oral medications to give to Timmy.

Timmy did not eat again today. This is the fourth day. He only drank a little bit of juice from a syringe. His eyes have such dark circles under them now and his color is so pale. He has been sleeping ever since the medicines were hooked up. I hope I still get some more awake time with Timmy.

My emotions continue to be so on the edge. I don't know if I can stop the tears anymore. I am watching Timmy in the final stage of his life. I know he will be at peace soon. Soon he will be an Angel with the bluest eyes and brightest smile in Heaven. I already ache from the loss of his physical presence.

For now our little guy continues to hang on. He sure is stubborn, he is just not ready to say goodbye to his mommy. It is time to curl up with my boy. Thank you all again so much for giving me some good thoughts to hold on to.

With Love & Thanks, Susan

PS. Get to sleep early tonight Andrew and hopefully your fever will be gone by tomorrow. Love You!

Tuesday, April 4, 2006 6:33 PM CDT

Dear Everyone,

I am having a sad day, a weepy day. The enormity of this heartache that I carry around 24 hours a day has gotten to me today. My eyes are swollen from crying. I share this with everyone to let you know that I am not always strong and brave, I am really hurting today. I have been grieving for such a long time now. My mommy instincts are on high alert.

Today was another good day for Timmy. He was so at peace, quiet and slept for about five hours. The only time he cried was when I tried to feed him. He is not interested at all. When I try to give him drinks, he chokes on it. Our hospice nurse Peggy was not able to come today, but had complete coverage in case we needed anything. She called to check up on us too. My friend Sue Griffin, RN came over and checked Timmy out. His blood pressure was 80/?, His heart rate was 86 and irregular and his respirations were seven. Timmy's breathing pattern changes all the time so I just don't know what to call it.
Sue stayed with me for a while today and listened to me cry and cried with me too. There are so many people hurting over what is happening to Timmy. I live in a wonderful community where everyone is feeling all our pain. Everyone continues to be supportive, but this has been going on for so long.

I also spoke with the Palliative Care Team at Children's Hospital today. Jeannie is the nurse on the team who I usually talk to. We went over what medications Timmy would probably be getting from a pump. There are about four medications that need to be given so the delivery method is still being worked out. I also cried my eyes out to Jeannie today telling her that I think maybe we gave up on Timmy to soon. He is such a fighter and maybe I did not make the right decisions. This in all honesty is something that haunts me. Jeannie was wonderful, she listened to me and cried with me too. I had so many people crying today.

Tomorrow Timmy will have his port accessed. I hope the intravenous medications will be ready to start. I continue to have so much trouble getting Timmy to swallow his medications. Switching over to an IV will take away some of the agitation Timmy and I both feel.

Thank you to a wonderful lady named Kelly Iannone who made Timmy the most awesome oreo crusted/chocolate chip cheese cake. She brought it over today along with the DVD "The Chronicles of Narnia." I have not gotten Timmy to eat some yet Kelly but I will keep trying. How can he resist.

Jay went to work today. The boys are both keeping busy in school and I hope so much that I feel better tomorrow.

Please continue to keep Timmy in your thoughts and prayers.

Love, Susan

Monday, April 3, 2006 6:16 PM CDT

Dear Everyone,

Thank you so much for all the prayers. God was listening because Timmy was comfortable and pain free today.

Timmy slept through the night last night. I think it was my worst night ever. We slept downstairs and I kept getting up to check on him. This morning, Jay and I woke Timmy up at 8AM to give him his medicines. I called his name a few times and he opened those baby blues and looked right at me. Jay stayed home from work today because we are so worried. Timmy was awake and so peaceful today. He looked like he was thinking about something for most of the day. Our hospice nurse Peggy came at about 1PM today. Timmy's blood pressure is so low, 52/36 and his heart rate is fast, 128 and irregular. His breathing pattern keeps changing and it is so labored. His body feels so cold. We all sat and talked for a long time about Timmy, his medicine schedule and accessing his port. On Wednesday, a pediatric IV nurse will be coming to access Timmy's port. The intravenous medications are being ordered. Timmy's port will stay accessed so we can start his intravenous medications at any time. He continues to have so much troubling swallowing so I think the switch over will be soon.

Timmy stayed awake for most of the day. Timmy's 4th grade teacher this year, Mrs. Bauer came over to read him a story. I am sure most of you know the book "Love You Forever" by Robert Munsch. In the book it repeats a mother saying to her son as he grows "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be." Timmy slept as she read the book, but Mrs. Bauer continued to read it to Jay, Aunt Liz and myself. We were all crying by the end of the story. Thank you Peggy for coming by to see Timmy today.

Timmy slept peacefully from about 4-6PM. We continue to struggle getting his medications into him. Our hospice nurse Peggy says Timmy clenches his teeth and closes his mouth because that is all he has left to show that he has some control. I did get Timmy to open his mouth tonight and take a few bites of strawberry jello and chocolate whipped cream. I even made him smile when I squirted the whipped cream into his mouth from the can.

Thank you so much to everyone for the emails and guestbook messages filled with love and support for Timmy and our family. I'd like to share some of them with you because they have touched my heart so deeply. "I will keep praying that a miracle will happen for us all. Thank you for sharing your beautiful, sweet, brave Timmy with us." "When Timmy runs to Jesus, he will look back, towards his mommy and thank me for loving him. He will be so happy, free and without pain." "Timmy is a special child that has brought so much into a world that we sometimes take for granted." "We love our children with all our being, that does not change after they are not with us."

Thank you Kathy Whalen for the delicious dinner tonight. It was so good to see you and talk to you. Thank you everyone for the beautiful cards that are being sent to me (Stamping in Faith) filled with so much love and support for Timmy and our family. Thank you Sylvia P. and Michele K. for the books that you sent me to read. "When There Are No Words" and "Life is Tough But God is Faithful" are books that I will certainly read. Thank you to all my friends who continue to hold me up and be there for me. I truely do feel so much gratitude through all this heartache.

Please keep Timmy, Genna, Gabbie, Kyle, Matthew, Jordan and all the children who continue to fight this battle in your thoughts and prayers and especially Angel Justis and his family.

I will update soon.

Love, Susan

Sunday, April 2, 2006 3:26 PM CDT

My Dearest Family & Friends,

I know each end of life journey can be different. Some times people suffer greatly, others do not. Never, ever did I expect ours to follow the path it is on. We have been on hospice for two months now. Weeks ago we thought we would lose Timmy, most likely in his sleep. If it had to be any way, that is the what I would have wanted. Timmy is declining slowly, and it is so difficult to watch.

On Saturday, Timmy was awake all day until about 4PM. He was uncomfortable, agitated and cried so much. Timmy is on so much pain medication. I pray that he is not in pain. Timmy has been pushing away all his oral medications, clenching his mouth closed tight. He has not eaten anything in two days. He drinks just a little bit.

I had hoped Saturday would be a good day for Timmy. Timmy's teacher from last year came by to read him a story. Kathy Lettieri is a great story reader, if only Timmy were in a better mood. She did get a few smiles at the beginning but half way through the story he started to cry. Thank you so much Kathy for coming over to spend time with Timmy. Later in the day, Timmy had a visit from his favorite female police officer. Diana Rocchio is a firearms instructor who is from the Bronx, NY. She came loaded with gifts for Timmy and beautiful tulips for me. Diana is another Angel who has come into our lives and has brought us so much love and comfort.

Saturday night Timmy slept well. After being up most of the day, I decided not to wake him up to give him his middle of the night medication. He so needed to sleep and of course we got to spend this weekend together in mom's bed. My sleep was so restless this weekend. I think I stayed awake and watched him breath all through the night.

Today this journey took another turn. Timmy has been asleep all day. The weekend hospice nurse came this morning to check on Timmy. She really could not hear his blood pressure, his heart is beating so faintly. He has quite a bit of fluid build up in his fingers, legs and feet. We once again spoke about switching over to intravenous medications, but this needs further discussion with the Palliative Care Team at Children's Hospital tomorrow. We are struggling trying to get Timmy to take his medications. I think the hardest is watching him not eat or drink.

I wish I didn't have to write this. I wish I didn't feel this way. I know I don't have to tell anyone how much we are all hurting. If my Timmy is not meant to get better, have his miracle, then I wish God would take him soon. I don't want him to suffer anymore. I love this child so much and I want his soul to be free from his broken body.

Please keep those candles burning. Please say prayers for peace and comfort for our boy. I have shared him with all of you for a long time now and he is your boy too.

With Love & Thanks, Susan

Friday, March 31, 2006 6:56 PM CST

Dear Everyone,

Our morning started off very well today. Timmy was comfortable and pain free. Our hospice nurse came first thing this morning. Timmy even smiled at her today. His vital signs were blood pressure 90/? (she could not get the diastolic) pulse 90, respirations 10 and shallow. She changed the three 25mg fentanyl patches to one 75mg patch. Peggy has also been thinking of some ways to cheer Timmy up. Today she brought some bubbles and we blew bubbles up in the air for Timmy to pop. I think he enjoyed it. We will not see a nurse again until Sunday.

Around noon, Timmy started to cry and continued to cry on and off for two hours. He was so restless, agitated. I gave him some morphine after I asked him if he had pain, and he pointed to his head. I can't stand the thought of him having any pain in his head. It wasn't until 2PM when he fell asleep and slept till 6PM. Timmy has not eaten much today and refused to eat dinner. I don't know, I just don't know. I am so worried about him.

One of the messages in the guestbook from Angela (Hadley's Mama) really got to me and I hope it got to everyone else. There are so many children out there suffering everyday from brain tumors. Timmy is suffering, Hadley is suffering, Genna is suffering, Kyle is suffering, Matthew is suffering and so many more beautiful children are suffering and die from brain tumors. This whole situation is unacceptable. A cure must be found. An article I read in the American Cancer Society newsletter stated that research is near a standstill for most types of children's cancer. "The success in pediatric oncology has been made with drugs that have been around for 30 years." Because childhood cancer is relatively rare there is no profit in developing drugs for children's cancer. The market is too small to be worth the hundreds of millions needed by the drug companies to bring an experimental drug through testing to gain FDA approval. So I will now get off my soapbox and hopefully someday, somehow, I can help make a difference.

Timmy is now watching King Kong with his dad and we are popping some popcorn. I wish everyone a wonderful weekend with their families. My next update will probably be Sunday night.

With Love & Thanks, Susan

Thursday, March 30, 2006 6:25 PM CST

Dear Everyone,

Well it's been a long time since I've had so much fun. I feel kind of silly, but I was watching the hug counter jump by 10-20 hugs last night as the big 1 millionth hug got closer. How cool, children, schools, people from all over the country hugging Timmy fast and furious last night. I was thrilled to learn it was one of my oldest, best friends Vicki who got the big one. Love you Vicki! My son Andrew did a great job with the banner and getting the number one in place. Thank you so much Andrew.

Timmy did good last night until I woke him up at 2:30AM to give him his ativan. He gets almost two droppers full of medicine, so it's hard to just sneak it in his mouth without him waking up. Then Timmy needed a drink and I spilled cold water all over him. I was lucky because he settled down pretty quickly and went back to sleep.

Timmy woke up good this morning. I was able to change him and move him without him crying out in pain. He is off the morphine now and only on the 75mg fentanyl patch. I am hopeful that the new dosage of fentanyl will be enough now. I noticed that Timmy has a fear of being moved. He associates any movement of his body with pain, so he cries and lies still all the time. I so hope this new amount of medication will make him more comfortable so he can get rid of that fear. It would be wonderful if we could move him around more.

The hospice nurse came today and Timmy's vital signs were within the same range as yesterday. He is starting to get some more fluid build up in his feet, legs and fingers. He was not happy with the nurse being here today. He cooperated with her but kept his face turned to the side. Peggy, our nurse thinks she may only need to come every other day now. We all so want to decrease any stress in Timmy's life right now. He is so sad most of the time. I am trying so hard to find ways to make him happy. I so need to see those smiles again.

Timmy has a very interesting diet these days. Banana's and cheesecake for breakfast. Macaroni & cheese and chocolate pudding for lunch. Applesauce and chocolate covered strawberries for dinner. This is all fine with me as long as he is eating.

This has been a week of abundance with food and desserts. Thank you so much MaryAnn, Joan, Michelle and Elizabeth for taking such good care of our family.

Elizabeth, you are another Angel who has been sent to me to comfort me. Our conversation tonight, your insight into my life and Timmy's helped me see things better. Thank you for caring so much and being there.

A mom whose daughter is also battling a brain tumor sent this quote to me today. I think it is how we live our lives each day. Thank you Celeste.

"We have this moment to hold in our hands
And to touch as it slips through our fingers like sand
Yesterdays gone and tomorrow may never come
But we have this moment today"

I will update soon.

Love, Susan

Wednesday, March 29, 2006 6:11 PM CST

Dear Everyone,

It was a pretty good day today for Timmy. Some medication changes have been made and hopefully our Timmy will be better for it. I always worry about medication increases, especially with the narcotics. I don't want Timmy to be sleeping all the time. Our hospice nurse spoke with the Palliative Care Team at Children's Hospital today about the changes (pain, eye fluttering and hand tremor) in Timmy. Their recommendation was to increase to a 3rd fentanyl patch (or one 75mg patch) for pain and increase his ativan for the eye fluttering and left hand tremor. They also want me to start getting up in the middle of the night to give him a dose of ativan. I started the medication changes this afternoon and Timmy did sleep for many hours, so I will have to watch him to make sure this is not to much. Timmy's vital signs today were good. Blood pressure 80/56, pulse 64 and irregular, respirations 12 and shallow. He really has not had much in the way of pain today but he continues to cry out of frustration. He is one determined boy and keeps trying to feed himself even though it is hard. He will not let me feed him. He stubbornly turns his head to the side in protest. I think this is good because he has not totally given up yet. Timmy's appetite today was not great but he continues to drink well.

What a beautiful day today here in New Jersey. I opened some windows so Timmy could feel the fresh air all around him. I managed to get some fresh air today when my friend Felicia stopped by to visit. We talked in the sunshine on my back deck for awhile, while Timmy was sleeping. Later on I took a walk around the neighborhood with Timmy's Godmother and my friend Liz. Going out is difficult for me. I hardly ever go out anymore because it is so hard running into people. I feel like I have been isolated for so long. I was pleasantly surprised when I ran into quite a few friends who gave me hugs and were able to talk to me about Timmy in a good way. People were waving to me from their cars too. I was amazed by all the support and love.

I got a lot of emails yesterday after my update. So many people from everywhere telling me about different books they recommend I read. Also mom's who have lost a child and shared their experiences of grief and mourning with me. Thank you all so much. I know some of you worry about being intrusive. It is not, because I want and need to hear from others so much.

As for the hug counter. I honestly do not know what it will do when it reaches 999,999. It may stop or hopefully reset. My son Andrew is ready to put the "1" in front of the counter and it will be everyone's guess what the counter will do. I emailed the webmaster who runs the hug counter asking him if he could add on another space for the millionth number. I even offered to pay him a small fee, but he never answered me. Whoever gets the one millionth hug, please leave me a message and let me know who you are. I would really like to know.

Sometimes these updates take me a while to write. It is now 8PM and Timmy is sleeping peacefully. It's time to go curl up with my boy.

With Love & Thanks, Susan

Tuesday, March 28, 2006 6:21 PM CST

Dear Everyone,

I have been holding off on this update today waiting to see if Timmy is okay. The first half of his day was good. Timmy had a little oatmeal for breakfast. When our hospice nurse was checking Timmy today, she found some painful areas. When she touched his lower back and neck he cried. She checks his spine all the time, this time it hurt. She thinks he may now have tumors in his spine. I don't want to think about it at all. Timmy's blood pressure, pulse and respirations were higher today, but she did take them after he cried from pain. His breathing is still irregular. Strangely today there is no wheezing but some congestion. Later on this afternoon while Timmy was sleeping, I noticed his eyes were fluttering. When he woke up his left hand was shaking quite a bit. I called our hospice nurse and she advised me to increase his ativan. I hope the ativan will help because I always worry about this kind of activity leading to a seizure.

I have been doing some reading lately, trying to gain knowledge about parental grieving and the loss of a child. It is often said that the death of a child shatters the very order of the universe...children are not suppose to die before their parents. It is unnatural and incomprehensible. Losing a child entails mourning not only the child himself, but all the hopes, dreams, wishes, fantasies, and needs relating to him. When you lose a child, you lose part of yourself.

I treasure Timmy, love him and celebrate his life every day that he is here with me. Sadly though, I have allowed myself to go to that nightmare place of losing him. It hurts so so much.

We just finished dinner and Timmy ate a bowl of applesauce. He is drinking very well. His tremor seems to have settled down a bit, but he has difficulty feeding himself with his left hand now. I hate the thought of him losing this too. He has been so independent when it comes to feeding himself. We are back to sleeping downstairs at night, but so far so good. Jay has been going to work later in the morning so he can help me with Timmy when he wakes up. Jason has spring fever and keeps asking for "mental health days". He just is not into school right now.

Thank you to my friend Michelle Mabry who came by to see us today. She brought so much cake! Cheesecake, chocolate mousse cake and assorted pastries. Timmy loved the chocolate mousse cake. It was so good to see you Michelle and thank you for the beautiful prayer you said for Timmy. Thank you also to my friend Tina Hoffman for our delicious dinner tonight.

Thanks Rich for the laugh tonight. "Holy hug counter". I just can't believe how quickly the hugs for Timmy are coming in. Thank you so much!

Please keep Timmy and all his friends in your thoughts and prayers and I will update soon.

Love, Susan

Monday, March 27, 2006 3:06 PM CST

Dear Everyone,

Dates, certain dates will always bring back memories. Sixteen months ago today, Timmy was diagnosed with a brain tumor. In the beginning, I had no idea what this journey would be like. I knew it wasn't going to be easy, but as long as there was a plan, I had hope. Entering hospice I did not know what to expect but I certainly did not expect what is happening now. It is almost eight weeks since we have brought Timmy home from the hospital. The hospice nurses, the doctors, even Jay and I can't believe Timmy is still here with us. This child's will is strong, his body is strong, his love for us is strong.

Today Timmy has been comfortable, peaceful, no crying. He really has not eaten much today. The hospice nurse came this morning and Timmy's vital signs are higher then usual. His respirations have changed. He is breathing more regularly, but deeper and there is a wheezing sound coming from his chest. I do not believe he is in any pain. We talked for such a long time about why Timmy is still with us. Peggy our hospice nurse just does not know. She says everyone at the Visiting Nurse's Association keeps asking about Timmy and she tells them he is a miracle.

I am so happy that everyone liked the picture of Timmy. The evil steroids have changed him so much. If you look deep inside those beautiful blue eyes, our Timmy is still there.

Let's keep those candles burning.

As always, please keep Timmy in your thoughts and prayers and I will update soon.

Love, Susan

Sunday, March 26, 2006 12:14 AM CST

Dear Everyone,

It really has been a quiet weekend. Our family was together and we all spent lots of time with Timmy.

On Saturday, Timmy's day started off with a nice warm shower. We gave him a little bit of morphine before taking him in to help with any pain. Timmy enjoyed the shower very much. I think it was relaxing for him.

We got a phone call from Sandy, a weekend hospice nurse in the morning to check in on Timmy. When Timmy was in the shower, his Fentanyl patches came off. The new box I had was different and I was not sure if I had put them on right. Sandy was more then happy to come over and check them. While she was here she did his vital signs and they were all higher then usual. She noticed his breathing pattern of two deep breaths and then 15-20 seconds of apnea. She said he looked very comfortable and believed he was not in any pain. Timmy cried alot again yesterday. I wish so much he could tell me why he was crying. Timmy also slept a very long time yesterday, and for the first time ever, he had nothing to eat (not even cheescake worked this time). I believe he is still drinking enough during the day. We both had a good nights sleep in mom's big bed.

Timmy woke up feeling good this morning. I offered him another one of his favorites for breakfast, McDonald's pancakes, and to that I got the biggest smile. So off Jay went to McDonald's and we all had pancakes for breakfast. Timmy ate a half of one with lots of syrup.

So far it's been a good day, Timmy seems content and happy. He certainly is giving me my share of cuddles, kisses and smiles. Thank goodness there are still good days, good moments. I love this little guy so much and I need all those moments to remember. I had Jay take a few pictures of me and Timmy together. These are special, private moments with Timmy but I very much want to share Timmy with everyone. My web friends from across the country have become like extended family to me. I've said it before and I'll say it again. I could never do any of this without all of you and I mean that from the bottom of my heart.

Thank you so much to my neice Kristin, nephew Derek and their mom Tina who left a build-a-bear outside our front door last night. The bear has a recording device and we all have recorded "I love you's" to Timmy. All Timmy has to do is push the button and he will get lots of love from us. Thank you Tina.

Some belated news that I just found out about this weekend. Andrew was inducted into the Lambda Pi Eta, National Communication Association Honor Society for the Fall of 2005 at Quinnipiac University. Congratulations Andrew, we are so proud of you.

Please keep Timmy, Kyle, Jordan (MRI this week) Matthew P (who is completing six weeks of radiation this week) Matthew W. (Happy 13th birthday in Heaven) Genna, Gabbie and Angel Justis and his family in your prayers. I will update soon.

With Love & Thanks, Susan

Friday, March 24, 2006 3:54 PM CST

Dear Everyone,

Just a short Friday update. We were able to get Timmy upstairs to sleep in the big bed with mom last night. I noticed last night how big Timmy really is. He has gotten so tall and has such long arms and legs. I was told by our pediatrician that he would have been at least 6 feet tall someday.

Timmy once again had a morning with many tears. He just cries so easily and looks so sad. I am so sad right along with him these days. Our hospice nurse came today and checked Timmy over really good for pain. He didn't seem to have any. She thinks the sadness is from Timmy trying to detach himself from us (me). His blood pressure was 52/40, his heart rate 52 and his respirations 10 and shallow. We agreed to give him additional morphine every six hours. So far for the rest of the day, Timmy has been sleeping peacefully. I have been laying next to him and holding him for hours.

We have a quiet weekend ahead of us. Andrew came home from college a short while ago. This will definitely be a family time only weekend.

I so appreciate all the wonderful, caring people out there leaving messages of comfort and support. So many people who have never even met Timmy come to check in on him everyday. He is such a good boy and he is so loved by so many. I am so proud that Timmy's journey has made a difference in the way others live their lives. Live, love and laugh because life is so precious and short.

Let's see if we can get that hug counter to 1 million. Andrew is ready to put that "1" in place if we do.

I will update soon.

Love, Susan

Thursday, March 23, 2006 3:04 PM CST

Dear Everyone,

Our boy continues to fight, surprising everyone. Timmy had a good day yesterday. He is awake for a few hours in the morning and then sleeps most of the afternoon. We did not have a visit from our hospice nurse yesterday. She called in sick and somebody forgot to tell me. Timmy and I spent some time together listening to tapes of the relaxing sounds of the ocean, waterfalls and rain. The candle that I burn for Timmy is cinnamon apple pie. We both love the smell of it. I guess we will call these things our alternative medicines.

This morning Timmy was up early. It was obvious that he was not feeling well. As soon as I tried to move him, he cried so much. He told me his head hurt. I gave him some morphine to help settle him down. I got an early morning phone call from the wonderful Dr. Belasco again, checking in to see how Timmy is doing. She said Timmy is one strong little boy and that children's bodies are stronger than adults. Sometimes their bodies just don't realize how sick they are. We talked about adequate pain control and if maybe it was time to switch over to intravenous medications. Hospice wants to keep the medications oral and not bring in any of the beeping, noisy machines. Timmy would also need to have his port accessed. The machines and the port may add to Timmy's discomfort and agitate him even more. Giving Timmy his medications intravenously would provide more consistent pain control. I worry about the disturbances that I know all to well that will happen in the middle of the night. It's a something Jay and I are talking about.

Timmy was restless today, even the hospice nurse noticed it. She believes since we were at the end of the Fentanyl patches, that he may need the morphine more for breakthrough pain. Today Timmy's blood pressure was 78/40, Respirations 11, pulse 64 and irregular. His breathing is shallow. He is just not having the best day and not sleeping very much either. His appetite was good though. Besides the cheesecake, he ate cheerios and some noodle soup.

I found myself being very angry this morning. I hate seeing Timmy in pain. I hate that this tumor is still growing and every day trying to take my boy away from me. Brain cancer is so horrible. My friend Sonya from Texas called me this morning while I was upset. She told me to go outside and just scream or to break something. I wanted to so much but I didn't. I think there is some screaming or breaking somewhere in my very near future.

Thank you so much for all the prayers for Timmy. I know they are working and keeping Timmy here with us. We just have to keep hoping and praying for more peaceful days ahead for our boy.

I will update soon.

Love, Susan

Wednesday, March 22, 2006 8:45 AM CST

Dear Everyone,

We continue to be on an emotional rollercoaster. Timmy is fighting to still be with us. This past weekend we thought we would lose Timmy. Yesterday Timmy seemed better. His blood pressure was 88/42, heart rate 86 and irregular, respirations 12. His breathing has remained the same over the last week. He is in no distress. The hospice nurse is amazed, but thinks the additional Fentanyl patch is bringing Timmy more comfort, so he feels better. I really don't know why Timmy seems better. Hopefully the reason is all the prayers being said for Timmy's comfort and peace. Hoping for a miracle? I can't even allow myself to go there. I don't want to allow myself to hope and then get knocked down again.

Something new that has been happening with Timmy is that he is having left hand tremors and alot of eye fluttering in the morning. Because of this we have increased his ativan and it seems to be taking care of this. He is not on his seizure medication anymore, so the fear of seizures is always with me. We have slept the past two nights downstairs because that is where Timmy wanted to sleep. Bad dreams for me again last night. In the middle of the night I jumped off the sofa calling out Timmy's name. Timmy woke up and looked at me like, what mom?. He was just fine.

Timmy is eating bites of cheesecake for most of his meals these last couple of days. A wonderful woman in Middletown, whose husband is a police officer here emailed me offering to make Timmy a cheescake. She called it "Aunt Tessie's Heavenly cheescake". Her husband dropped it off at our house sometime during his midnight to eight shift Monday night. The cheesecake is delicious! Thank you so much Donna, maybe it's the cheesecake that is making Timmy feel better.

We have a quiet day ahead of us today. That gives me more time to cuddle with my boy. He has been enjoying back rubs lately too. I love to make him feel good. Jay headed into work today for a few hours and the boys are both in school.

The hug counter has gone crazy again. Thank you so much. Thank you also for including Jay, Jason and Andrew in your messages, it means alot to them.

Please keep Timmy, Genna, Gabbie, Kyle and Angel Justis and his family in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

Monday, March 20, 2006 4:28 PM CST

Dear Everyone,

I have so little information to update with. What I can tell everyone is that Timmy and I slept good last night. Timmy woke up with a little bit of pain but settled down after his medicines. The hospice nurse was here this morning. Timmy's blood pressure was 72/ not audible, respirations 10 and his heart rate 56 and irregular. While she was here she called the Children's Hospital Palliative Care Team to discuss medication changes. What we decided to do was to go with 2 Fentanyl patches on Timmy, which would be 50mgs now. I have been using morphine for breakthrough pain, so the extra patch should help with that. We are discontinuing the Valproic Acid (seizure and neuropathy pain) medication, because I just could not get 4 tsps into him during the day. Our hope is that the ativan will keep any seizures away. Timmy has been resting comfortably today. He has been sleeping most of the afternoon. He had three bites of cheescake for breakfast and has been drinking a little bit. I feel like we are in a kind of limbo.

Yesterday was such a rough day. I just thought it was the day Timmy would be going with the Angels. I mustered up the courage yesterday and it was so, so hard to talk to Timmy. He is always reaching out for things and looking out into the distance. I asked him if he was seeing Angels? He did not answer me. I told him that if he was, that it was okay to take their hand and go with them, if he wanted to. I told him I loved him very much and that I would miss him, but I would be okay. I choked through those words. Timmy just did not respond but I know he heard me. Never, ever in my lifetime did I ever think I would be having this talk with my child. It is unreal and heartbreaking.

I must tell all the moms out there that what I am doing may seem like strength, but we moms have that strength in us. It is called love..love like no other for our child. It allows us to do things we never thought possible. What takes strength is sharing this journey with everyone. Sometimes the words, my feelings are so hard to express. What I get back from everyone through their messages is strength and that helps me go on for my family. So thank you everyone for helping to carry me down this road.

Andrew went back to college yesterday. Jason went back to school today. Jay is still home with us and we wait, minute to minute to minute......

I will update soon.

Love, Susan

Sunday, March 19, 2006 2:12 PM CST

Dear Everyone,

It was wonderful to have our family around yesterday, but Timmy did not have a good day. He was agitated, he cried a lot and I think he was in pain. I gave him morphine and asked everyone to leave his room so he could sleep. Timmy slept through the night but woke up with pain again this morning. Timmy has been comfortable so far today but he is very quiet, sleepy. Our hospice nurse just left and Timmy’s blood pressure continues to be low and his breathing irregular. She said we are doing everything we can and just gave me a hug. Keep those hugs coming everyone, because Timmy and I need them a lot.

My new friend Laurie Fantasia came by our house yesterday to visit Timmy. I only recently met Laurie. She is friends with and works with my future sister in law Joanne. Laurie has been very supportive of Timmy and me. Most of you know her from her beautiful graphics and messages in Timmy’s guestbook. Timmy inspired Laurie to join the prayer group “Angel Wings”. Laurie not only writes beautiful messages, but sings beautiful songs. Laurie wrote and sang the song for Timmy that you are now hearing (lyrics are above). The title is “Angel Lullaby”. Her boyfriend Bobby Card composed the music. Have your tissues ready because the song will touch your heart. This song honors all my Timmy has been through and how so many people feel about him. Thank you so much Laurie for this beautiful gift that I will treasure forever.

We found something amazing outside our front door this morning. It was 1,000 origami cranes. There is an Asian Legend that holds that if you fold one thousand paper cranes, the gods will be pleased and grant your wish for renewed health. The cranes (pictures below) were folded by students from the WR Satz Middle School in Holmdel. These students, just too many to name did this for Timmy. One of the girls wrote that she hoped that the cranes would provide comfort, and that we would know that there are perfect strangers out in the world who care about our family. Thank you all so much for thinking of Timmy and our family. Your thoughtfulness means so much to all of us.

It is time for me to get back to Timmy. I need to be with him, I should be with him, but I wanted to update all our family and friends today. Thank you so much to my wonderful son Jason who helped me so much to get this journal updated today.

Please keep those candles burning and continue to pray for comfort and peace for my beautiful boy.

Love, Susan

For Every Crane

For every crane,

Someone out there cares for you,

For every crane,

Someone out there has you in their heart,

For every crane,

Your story will live on throughout us…

And for every crane,

We will tell about your bravery,

Your innocence,

And your perpetual happiness,

For every crane…

People will remember your optimism,

Your undeniable optimism,

For every crane,

We’re here with you,

Side by side.

Saturday, March 18, 2006 10:54 AM CST

Dear Everyone,

Just a quick update. We have a lot of company coming soon.

Timmy was more alert yesterday. He did not sleep much during the day. He had little trouble swallowing his medications and drinks. Amazingly, he ate some cheerios, cheesecake (his absolute favorite) and some mashed, boiled potatoes during the day. Since he was awake a bit more he was frustrated trying to communicate with us. Jay and I play guessing games trying to understand what he is asking of us. It is so difficult because sometimes we just don't get it and Timmy cries. The wonderful Dr. Belasco called us again last night to check in on Timmy and us. I expressed to her my guilt over thinking I am holding Timmy back. She told me Timmy will go when Timmy is ready. We spoke of keeping him comfortable, hoping that his passing will be peaceful. So many things I fear like hemorrhage or seizures can still occur. The pictures of what happen in the end can haunt you forever. She so hopes we can stay ahead of these horrible things and not have them happen.

It was a good night for Timmy except he woke up at 6AM crying. I gave him a small dose of morphine and his ativan. He fell back to sleep and so far today is having a quiet day just resting. As for his mom, bad dreams last night for me. Of course I cannot remember them but today I am so tired. I was able to bring some smiles to Timmy's face today by giving him cheesecake for breakfast.

We will not be having the hospice nurse come by this weekend, unless we request her.

So my boy continues to rally on giving me a new miracle each day he is here with us.

I will try to do another update tonight after the family leaves.

Thank you Laura Fox for the delicious St. Patrick's Day dinner you cooked for us yesterday. We enjoyed it so much.

With Love & Thanks, Susan

Friday, March 17, 2006 11:25 AM CST

Dear Everyone,

Timmy continued to have a peaceful, painfree day yesterday. He slept from 12PM to 6PM. At 6PM, with great difficulty, I attempted to wake him to try to get him to eat something and take his medicine. I don't know why we did not think of it sooner, but Jay carried Timmy upstairs last night, so he could sleep with his mom. We both managed to get a good nights sleep last night.

The morning was so good. Timmy once again woke up pretty alert. He took all his medicines with no trouble swallowing and ate a full container of yogurt with fruit for breakfast. This brought smiles to Jay and my faces.

Our hospice nurse spent alot of time with Timmy this morning. Timmy's blood pressure is low and she was not able to hear a diastolic pressure. His lungs still have fluid in them. His extremities are cold and so is he, due to decreased circulation. His breathing continues to be irregular but he is in no distress. We will continue to give him his medicines orally since he seems to be getting enough to keep him comfortable. She is not worried if we miss some. I am so relieved that Timmy is so peaceful. I spoke with him this morning telling him what a good boy he was, and how brave he was, and that he was so loved. He is so loved by so many people and that brings me so much joy. My heart aches because I know I will soon lose Timmy, but I continue to feel that I have been so lucky to have had the "gift" of Timmy for ten years. I have gotten so much love from this child, a lifetime of love. The selfish side of me wants more, more, more.

We have a quiet day ahead of of us today. I expect Timmy will sleep alot. Tomorrow my mom, dad, brothers and their families will be spending the day with us. It will good to have the family together again.

I just would like to share a few special things with everyone. My friend Caitlin started a Timmy vigil at midnight last night until midnight tonight. She has friends coming over every couple of hours to pray for Timmy. Her brother Michael and sister Brigid will be praying along with them in Ireland. My friend Maryann sent me a quote to express how her son Anthony (who is Timmy's best friend) feels about Timmy. "True friends are not seen with the eyes, they are felt with the heart". My dear friend Sonya, who lost her son Justis over two months ago has been calling me every day to see how I am doing. Uncle Greg, our family neurologist calls every night to check up on Timmy and give us encouragement. All these things mean so much to me. I could never say thank you enough for making this journey a little more bearable.

Thank you everyone for continuing to support us with your messages in the guestbook. They mean so much to Jay and I. I will try to keep Timmy's journal updated as often as possible. Please continue to pray for Timmy and keep the candles burning.

I am so grateful for all of you.
Love, Susan

Thursday, March 16, 2006 1:17 PM CST

Dear Everyone,

Timmy slept peacefully and painfree last night. Last night was his first night without the morphine. The fetanyl patch is doing a great job of keeping his pain away.

When I woke Timmy up this morning, I was thrilled to see him open his beautiful blue eyes. He was calmer, somewhat more alert for most of the morning. Swallowing has become a big problem. Because of this, Timmy does not want to eat or drink anything. Getting all his liquid medicine down is upsetting him. There is a good chance we may have to access his port to give him his medicines intravenously. It is so difficult watching him not eat or drink. I am told that he will get what he needs from his body, but I know this is just another sign of his body shutting down.

The hospice nurse was here this morning. Timmy's vital signs remain the same as yesterday. His breathing is very irregular. Timmy had his eyes open for most of her visit and spoke a little. The nurse said that him being more alert today means the medicine is doing it's job. The reality is that Timmy's heart is working hard and the strain may be too much for him. He also may go on a while as the body continues to shut itself down. I so just want as many more peaceful, painfree days as I can with him.

Sleeping has become difficult for me at night. I watch Timmy breathe most of the night. I do not want to be asleep when it is Timmy's time to go.

I thought it would be a good idea for Jason to stay home from school for the next two days. I just want the whole family to be together.

I forgot to mention that the other night, Timmy's Taekwondo instructor, Mr. Meyers came by our house. Timmy is a brown belt in Taekwondo. He was so determined to become a black belt and I know he would have. Mr. Meyers agreed that he would have too. He presented Timmy with a black belt. The belt has his name embroidered on it and he was given a certificate awarding him the rank of 1st degree black belt. Thank you so much Mr. Meyers for doing this for Timmy. It is a wonderful honor.

Thank you everyone for all the thoughtful messages and all the candles lit. I will continue to treasure each precious moment with Timmy and keep everyone updated as often as I can. Letting Timmy go is so heartwrenching but he is peaceful right now. I so hope and pray he remains that way.

With Love & Thanks, Susan

Wednesday, March 15, 2006 10:18 AM CST

Dear Everyone,

Timmy got through the day yesterday with some pain. We gave him 10mgs of morphine every three hours. The fentanyl patch has now been in place for about 18 hours and should be helping to ease any more pain that he has.

Late last night we got a phone call from Dr. Belasco from Children's Hospital. I mention her name because I want everyone to know that this woman took it upon herself to call and check on Timmy. She was upset, emotional to hear that Timmy was suffering at all. She spent about a half hour on the phone with us helping us in anyway she could to ease Timmy's pain. Thank you Doctor Belasco, you are an Angel and we thank you from the bottom of our hearts.

Timmy slept comfortably last night with me giving him morphine and ativan every four hours. Since I couldn't squeeze in next to him, because of all his pillows, I layed with him across the top of his bed with my feet resting on a chair. I had the best view in the world of the most beautiful, peacefully sleeping little boy.

Timmy woke up good this morning, even had a little breakfast. Swallowing has become so difficult for him. Our hospice nurse just left and Timmy's blood pressure continues to drop, his respirations and pulse are irregular and he has fluid in his lungs. He is not afraid and he is comfortable. Timmy's body continues to shut down and hopefully we can continue to keep him comfortable. The hospice nurse will come every day now.

I have thought much about talking to Timmy, telling him it's okay to let go and be pain free, a happy little boy again. I spoke with the hospice nurse and she said that Timmy is still alert, even though his eyes are closed. She said that when he is in a semi-conscious state that is when it is best done. My mommy instinct agrees. I will do it when I think it is time.

We are expecting some family and friends to stop by today. I want Timmy surrounded by the people who love him.

Thank you everyone for your messages of love and support. I want to share a website, and a poem that were sent to me that have brought me so much comfort.

I know my boy's time is short so lets all light a candle for Timmy. Someone once said to me that if we do not get his miracle here on earth, we will light his way home. I have been burning mine since yesterday.

With Much Love & Thanks, Susan & Family

Thank you Laurie Fantasia
www.allurah.com/momsangels.html

Thank You Peggy Bauer
“I'll Lend This Child To You”
By Edgar A. Guest

I'll lend you for a little while a child of mine, He said,
For you to love the while he lives and mourn for when he's dead.

It may be 10 or 11 years, or 22 or 3, but will you, till I call him back
Take care of him for me?

He'll bring his charms to gladden you and should his stay be brief,
You'll have his lovely memories as solace for your grief.

I cannot promise he will stay, since all from earth return,
But there are lessons taught down there, I want this child to learn.

I've searched this wide world over in my look for teachers true,
And from the throngs that crowd life's lanes, I have selected you.

Now give him all your love nor think your labor vain
Nor hate me when I come to call to take him back again.

I fancied that I heard them say, "Dear Lord, Thy will be done."
For all the joys this one shall bring, the risk of grief we'll run.

We'll shelter him with tenderness and love him while we may
And for all the happiness he brings, grateful forever stay.

And should the angel come to call much sooner than we've planned,
We'll brave the bitter grief that comes and try to understand.

Tuesday, March 14, 2006 12:01 AM CST

Dear Everyone,

I so wish I had better news to share with everyone, but I don't. Timmy woke up last night in horrible pain. He was unable to tell us where it was hurting. It took about a half hour and some morphine and ativan to get him back to sleep again.

The hospice nurse came first thing this morning. Timmy's condition continues to deteriorate, and it is most certain that Timmy's healing is not meant to be here with us. She called Timmy a "warrior" as he continues to defy them and fight. Timmy will now be changed over to a pain patch called fentanyl. His ativan will be increased to 1mg every 4 hours. All his medications are being made into liquid form, for he has so much trouble swallowing. Timmy is resting comfortably today. He is not in any pain.

I thought I could prepare myself for Timmy's passing but each step closer is so painful. I will continue to hang on to each precious moment with my boy.

Thank you everyone for your love and support, it is so appreciated.

I will update soon.

Love, Susan

Sunday, March 12, 2006 11:08 AM CST

SUNDAY NIGHT UPDATE 8:30PM

The blessing went very well today. Timmy just layed there with his eyes closed as we prayed together. Jay, Andrew, Jason, Aunt Liz (Timmy's Godmother) and myself were there. Monsignor Walsh was wonderful with Timmy. Timmy has now been blessed with God's comfort and protection. As Jay and I walked the Monsignor to the door we both cried. The Monsignor in all his gentleness and love put his arms around us to comfort us. I feel so good about this added blessing given to Timmy today.

Dear Everyone,

Timmy is still fighting. I don't think he is comfortable yet, pain free. He continues to just keep his eyes shut or sleep most of the day. Yesterday I went up to 7mgs of morphine every 4 hours instead of 5mgs. The nurse recommended 10mgs every 3-4 hours. I have noticed that he has some phlegm stuck in his throat now and has slight gurgling sounds in his chest. We did not get Timmy outside yesterday, he just did not want to. I tried to bribe him with roasting marshmallows in our chiminea, but he just didn't want to. It's so hard when he starts to cry, I just back down. Timmy spends so much time in his hospital bed. I know his vision is not good. We have a portable DVD player that we now put on his hospital table, right in front of him and play all kinds of movies for him. All those Blockbuster gift cards are going to good use everyone. Yesterday we bought Timmy a 7 inch flat screen television set, also for his hospital table. Jay ran a cable across the room and hooked it up to our cable box. Now Timmy can watch all his favorite shows close up. What we will not do to make our children happy.

Jason went flying yesterday, it was such a beautiful day for it. He flew from Monmouth Executive Airport to R.J. Miller Airport in Toms River. My mom and dad live in Toms River and drove to the airport to watch Jason do a few landings. My dad was watching Jason with his binoculars. It was so good to get them out of the house and give them something exciting to do. I told Jason yesterday when he was up in the clouds to have a talk with the big guy up there, and say lots of prayers. He is so close to God and Heaven when he is up there. I thought maybe he'd hear our prayers better.

Today we managed to get Timmy into the shower. It was difficult, but once he was in, he enjoyed the warm water. He is now so fresh and clean and I think he feels better. I started giving Timmy 10mgs of morphine today just to see if it makes a difference. He is so peaceful today, eyes closed, no throat or chest sounds. His breathing is a little more regular but still coming from the stomach. He continues to eat a little and drink alot.

I have been putting something off for a while that I have arranged to be done today. This afternoon at 3:30pm, Monsignor Walsh from St. Mary's Church will be coming by to see Timmy. Timmy will be getting the the Annointing of the Sick Blessing. I am told that we will say some prayers for Timmy and then Monsignor Walsh will anoint Timmy with some oil. I always worry about frightening him, but I feel strongly that this needs to be done. Please say a prayer with us for Timmy at 3:30PM if you can.

We are all hanging in there with so much support from family and friends. I have been told by many that they are not giving up on a miracle for Timmy. Each day that Timmy is here with us, is a miracle. I am so looking for the big "M" though. The world needs a miracle.

Once again thank you for the caring messages. I know it is hard to know what to say, but we love to know that you are thinking about Timmy and our family.

I will update soon,

Love, Susan

Friday, March 10, 2006 5:21 PM CST

Hello Everyone,

The past two days have not been the best. I do not think Timmy is doing well at all. He sleeps or just keeps his eyes closed for most of the day. The biggest change is in his breathing. He has short periods of apnea. I can count to ten in between breaths. His breathing is also being done with his stomach and not his chest. As long as he is lying still, he has no pain. Sometimes when I try to move him he will cry out.

Our hospice nurse tried to get him out of bed today. We were hoping to put him into a wheelchair and take him outside. It was a beautiful 75 degrees here today. As the nurse sat Timmy straight up, he cried out in pain. She is recommending that we increase the morphine. Timmy's blood pressure was lower and his pulse was good.

As for the good news, Timmy has put his arm around my neck a few times, pulled me towards him and given me amazing kisses! Yesterday while I was laying with him, he put his hand in mine and squeezed it tight. My heart has been so filled up by the love he has been giving me.

Today, Timmy's Uncle Tom came to visit for a while, he just sat quietly with Timmy. My friend Felicia also came by for a visit and took a much needed walk with me. It was so good to get out in the fresh, warm air and just talk. Thank you Felicia for listening and caring so much. A little later on three teachers from Timmy's school came by to visit. They were so extremely happy to see Timmy. Timmy gave lots of smiles and shook his head alot at Mrs. Lettieri's silliness with him. It was so good to see you Mrs. Lettieri, Mrs. Cetnar and Miss Colmorgen. It was good to talk with you and laugh with you. You really lifted my spirits!

Thank you everyone for your wonderful messages. Laurie, Roseanne,Trish and Susan your messages of faith and hope mean so much to me. Michelle, Felicia and Caitlin...you guys can make me laugh...from Timmy for Mayor, to President and now Emperor of the Universe!

Andrew is home and we look forward to a quiet weekend ahead. Hopefully, somehow, someway we can get Timmy out of the house. It would be so good for him.

My friend Caitlin shared a definition of courage with me today. If this is what courage is, then I have it.

COURAGE..Courage isn't a lack of fear, it's having the most desperate fears and trudging on in spite of it into the unknown......

As always, please keep Timmy, Genna, Gabbie, Kyle, Angel Justis and all the children fighting courageously against all tumors in your thoughts and prayers.

With Love & Thanks, Susan

Wednesday, March 8, 2006 6:56 PM CST

Hi Everyone,

Yesterday was a rough day for Timmy. He was not comfortable, crying alot. Our hospice nurse Peggy came to visit and checked him over good. His vital signs are stable, his lungs are clear. He is definitely weaker though, especially on his left side. We are not sure how much he can see and he continues to have trouble communicating. Peggy gave Timmy a nice back rub and showed him how to take deep breaths to help calm him down. He was so good and kept breathing right along with her. She also spoke to him and asked him if he was afraid or worried about anything. Timmy just shook his head saying no. Peggy also flushed Timmy's foley catheter with the hopes of getting it to work again.

In the early afternoon we had a visit from a friend, Rich Hendersen. Rich is a NYC Emergency Services police officer. He has been a part of Timmy's life for a while now, always trying to plan something exciting for him. He helped get Timmy to the Yankee game last year. Timmy had mentioned that he wanted a flashing red light, something he may be able to use to get my attention(he always has my attention). Rich along with his fellow officers went right ahead and made one for him. I am not suppose to say but there is one red light missing from a police car in New York city right now. The light was made with a light switch so Timmy could easily turn it on. When Timmy turned on the light, it was so bright and flashy that Timmy covered his eyes and got scared. Sorry Rich, he really does love the light. It will be something special he can add to his police collection.

Just shortly after Rich left, Timmy got a surprise visit from two of his State Trooper friends. They came by to drop off a birthday card and tell Timmy about a training excercise they were at. Timmy was happy to see them, but he was so tired, he fell asleep.

I had been watching Timmy's foley all day long. By night time I realized that this horrible thing was still not working. I called my friend Sue, who is a nurse, and she came right over and took it out. Hooray, it's out and Timmy is so happy.

Timmy slept really well last night. He seemed to be more content and comfortable today. My good friend Ori who is Gabbie's mom came to visit me and Timmy today. Ori lives near Scranton, PA and drove 130 miles each way to visit us. Now that's a good friend! We met at Children's Hospital over a year ago when our children starting doing chemotherapy together. Ori has been doing chemo with Gabbie for five years now. She has learned so much and has so much to give. She missed my Timmy and came to make him smile. It was so good to see you today Ori. I will be thinking and worrying with all of you tomorrow when Gabbie has her MRI.

Timmy is resting comfortably tonight and I believe our next couple of days will be quiet. Andrew will be coming home from college on Friday for a week. It is officially spring break for him. It will be nice to have him home and the whole family together again.

I am trying so hard to be good for Timmy. My anxiety level is pretty high lately. I worry about what each day will bring with Timmy. The just not knowing is so difficult. I know that I can do this though, and I will for my beautiful boy.

I will update soon.

Love, Susan

Monday, March 6, 2006 7:10 PM CST

Dear Everyone,

As I was looking through some pictures of Timmy, I came across the one I have above. This picture is the very essence of the Timmy that I know and love. It shows his bright smile, his joy for life and his positive attitude. Timmy never wanted me to worry about him. He would always tell me "I'm fine mom" or give me the thumbs up. He continued to tell me "I'm fine mom" through 13 months of chemotherapy and radiation. I think Timmy is fighting because he wants to be fine for his mom.

So many friends have written to me in response to my latest update, doubting myself. I have been told not to second guess myself, that I am doing the best I can with the cards I have been dealt. I have been told to walk this journey with my head held high. That doctors and medicine can only do so much, but a mother's love will help me find strength that I never knew I had. I am going down a road that I have no map for and no one can tell me how to go, or where I am going. I keep telling myself these things over and over again. My head understands it, but my heart is having a hard time. Thank you to all my dear friends for being there for me. I am doing the best I can, and with a little help from my friends, I will continue to do so for Timmy.

Timmy has generally stayed the same over the last two days. He did take some long afternoon naps yesterday and today. His appetite is good and he is drinking very well. Our problems with his foley catheter continue. I just don't understand why this is happening. The new one is now not working right. Our nurse will be here tomorrow to trouble shoot it. If it cannot be resolved, out it comes.

Thank you everyone for the wonderful messages and for working so hard on that hug counter. I continue to read Timmy his messages everyday and tell him how many hugs he has. We are still opening up birthday cards as they are still arriving in the mail everyday. I think my count of 500 was way too conservative.

As most of you know, my friend Kristin's daughter Genna got some great biopsy news. A future once thought grim is now filled with some hope. Go Genna!! So many positive thoughts and good wishes go out to Kyle who is an inpatient at CHOP. He is working so hard to feel better and get stronger. Gabbie has her MRI coming up soon. They need good news so badly. To Sonya, thank you for continuing to give me strength and hold me up. I am sure Justis is looking down on his momma and so proud!

I will update soon.

With Love & Thanks, Susan

PS: The little dog in Timmy's birthday pictures is Gracie. She belongs to Timmy's chemo Angel Angela. Gracie is quite the rascal. Angela makes Timmy laugh with all her silly Gracie stories.

Click here to view the slideshow of Timmy's Birthday

Saturday, March 4, 2006 9:07 PM CST

Dear Everyone,

Today is one month since we brought Timmy home from the hospital. It is one month since we were told that Timmy was "slipping away" from us. Jay, Jason, Andrew and I are struggling watching Timmy continue to decline. There has been so much tumor progression over this last month. Timmy continues to have good vital signs, be awake most of the time and be mostly comfortable. Timmy does not talk much, he cannot find the words to communicate with us. He also has vision loss and no use of his right arm or leg. Timmy has some use of his left side but definitely increased weakness. The fact that he is still here with us is a miracle. The hospice nurse told me that the doctors at Children's Hospital can't believe that he is still with us. I struggle with the thought that maybe we should have insisted on starting chemo weeks ago. Timmy is fighting, maybe, just maybe.....Once again, Jay and I are in a place no parent should ever have to be in.

The medications are keeping Timmy comfortable. I feel that Timmy is letting me be closer to him, touch him more. Timmy's foley catheter stopped working late Thursday. We had to have it replaced. A few nurses from our pediatrician's office came out to replace it. It was horrible. Timmy fought them and cried so much. This will be the last time, if it breaks again, I will not replace it.

Friday was a busy day for us. The hospice nurse came out first thing in the morning to check on Timmy. I also get weekly visits from a social worker through the Visiting Nurses's Association. It is so hard to talk. Talking makes me think to much about everything that may lie ahead. I just like to take it one day at a time. Also my friend Felicia came by to drop off the CD of pictures from Timmy's birthday. Felicia sat with Timmy while I spoke to the social worker. Thank you Felicia and I am so sorry about the fall on the ice in the driveway. I hope your not hurting too much.

Later on Friday we all had the pleasure of meeting a beautiful woman who is an NYPD firearms instructor. Diana lives in the Bronx, NY. We have been communicating by email for a while now. She has been so touched by my Timmy and I have been so touched by her caring and compassion. I invited her to meet Timmy and she drove over 2 hours to do so. Diana came loaded with gifts and lots of love and hugs for Timmy and our whole family. She was a breath of fresh air who lifted our spirits and filled us with hope. Thank you Diana, you are such a good person and we are so lucky to have met you.

Today Timmy slept on and off most of the day. I have noticed that he becomes disoriented sometimes. He looks for things and reaches for things that just are not there. I do not like this at all.

Thank you so much to all my friends who continue to bring us dinner. It is so appreciated. A special thank you to Dana Deliso and MaryPat Harrington who helped me plan something today that was so difficult to do alone. Thank you Sue Griffin, RN for always being there for me to help with Timmy and answer my questions. On a funny note, my friend Esther Komjathy brought over an 8 foot plank of wood to put under the cushions of my sofa. She was worried about my back and wanted me to have more support. Love You Esther!

Well it is the weekend and I get to sleep with my boy in a real bed. I enjoy these nights with him so much.

I will update soon and please, please continue to pray for Timmy.

With Love & Thank, Susan

Click here to view the slideshow of Timmy's Birthday

Thursday, March 2, 2006 12:08 AM CST

UPDATE:

Slideshow of Timmy's Birthday below. Thank you Felicia for the pictures. HBO commercial follows the slideshow, could not edit them out.

Dear Everyone,

Timmy is ten years old! I think I wanted this birthday to come more then Timmy did. The emotional stress of waiting and worrying has worn me out. I am exhausted today. Yesterday was amazing from beginning to end. Timmy just woke up feeling good. He had a glow about him and he was happy. His nurse came yesterday morning to visit and his vital signs were great! He seemed strong and alert.

First, I want to say thank you so much to all the people who sent Timmy birthday cards. Timmy received about 80 more cards yesterday, plus lots of cards from the NJSP, when they visited. For the last few days Fed-Ex and UPS have been ringing my doorbell delivering packages and cards too. I have found many cards in my mailbox (that were hand delivered) from children, neighbors and even people from other towns. Quite a few police departments sent Timmy gifts too. Today, Timmy received over 40 more cards. I have lost count, but the total must be over 500 birthday cards sent! This is more then I ever dreamed. It will take days, weeks to open everything. Timmy thinks it is all so funny. He keeps shaking his head everytime I come in with more mail.

Timmy's Trooper friends from the New Jersey State Police made a grand motorcycle entrance at about 1PM yesterday for Timmy's birthday. Timmy could hear their motorcycles a block away. Once again these are big impressive guys who have such big hearts. These guys have been a part of Timmy's life for over a year now and they genuinely care about him. They spent a lot of time talking to Timmy and making him smile. I had a few of my friends here too. They were so helpful and having them here was so good for me. I don't see them often enough anymore and I miss them. We all enjoyed lots of birthday cake, donuts, cookies and coffee. The party lasted for about 1 1/2 hours then Timmy started getting tired and everyone left. It was a great afternoon.

The rest of the afternoon was quiet as we awaited the special "birthday broadcast" of Dan Turi from 94.3 The Point. We were all so excited and had every radio in the house playing. Dan did a fantastic job putting this tribute together for Timmy. My part was all pre-recorded but everything else was a total surprise. Timmy loved it. He listened attentively and grinned when he heard Mrs. Bauer's voice (his 4th grade teacher) and his whole class singing happy birthday to him. Thank you so much Dan Turi and to everyone else who took part in making this. I truly cried because it was so special. By the way, the special caller did not call. That would have been Jon Bon Jovi. It's okay though, Timmy probably would not have talked to him anyway. I was hoping he would leave a message at Timmy's website instead.

The day ended with the famous "Ginny Smith cake" which was as beautiful as it was delicious. Thank you so much Ginny, it will be a cake we will always remember.

Timmy received so many special gifts from people, some were sentimental. Prayer cards, a St. Michaels pin (the patron saint of police) and holy water. Please know how much these gifts mean to me. I am so proud of my son and feel so lucky to be able to share him with everyone. Maybe Timmy will get his miracle, if not, he will be remembered.

I do not have any pictures to post yet. As soon as I get them, I will have Jason post them. I am also going to see if I can have Jason record the radio broadcast from last night on Timmy's website. I would love for those who missed it to be able to hear it.

Please continue to keep Timmy, Genna, Gabbie, Kyle and Angel Justis and his family in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

Click here to view the slideshow of Timmy's Birthday

"BIRTHDAY WISHES" A beautiful card from the Powell Family from Ohio.

What shall I wish you, dear one,
As you enter another year?
A life all free from sorrow,
With never a pain or fear?
A path all strewn with roses
With never a prickly thorn
With all of joy to gladden
And naught to make you mourn?

No! then you would lose the blessing
That comes with sorrow's hour,
You then would lose the comfort
Of Christ's own mighty power;
Oft in the deepest trial
The richest blessing comes
And pain but leads us upward
Toward our heavenly home.

So I will leave your future
In His all-loving hand.
With Him will leave the mysteries
We cannot understand,
Content that He will lead you
The way that's always right,
The roughest path but brings you
To His own glory light.

I know that He will give you
His own deep joy and rest,
I know that He will send you
All that is wise and best;
So I will only wish you
Just His own perfect will,
His own sweet love and blessing
Your inmost soul to fill;

Yet, "more and more" of glory
Until the goal is won
And in His Royal Presence
Eternity's begun.

Tuesday, February 28, 2006 2:12 PM CST

Update: Wednesday, March 1st at 6:15pm, Dan Turi of 94.3 The Point will be wishing Timmy a Happy Birthday on the radio. I am told he is doing something special. Tune in or log on to www.943thepoint.com and click on listen live!

Dear Everyone,

I am taking this opportunity to update while Timmy is sleeping. He is so peaceful, the medications are doing their job. We started the new medications yesterday. They are in liquid form, a bit confusing. Some medications are in mls. mgs. and teaspoons. I find myself reading over each bottle many times before I give him his medicine. I am writing everything down on a medicine schedule. This can get so confusing. Timmy is so good. Everytime I come near him with a pill or a liquid, he just opens his mouth and takes it. Timmy still has some edema in his right leg and a small amount in his other extremities. I am keeping his legs elevated during the day. I am very happy that he continues to sleep well through the night.

Well tomorrow is Timmy's birthday. Actually the date is February 29th at 11:22am when my third son was born. I remember it was such a cold day and it was snowing. Timmy was a healthy full term baby who weighed 7lbs 4ounces. He was 20 1/2 inches long. I remember the exact moment he opened those beautiful blue eyes and looked at me. I have been getting those adoring looks every day since then. I love this child so much...

Well, I guess I asked for it, and Timmy got it. 67 birthday cards as of Saturday, over 80 cards yesterday and about 75 today. Miranda and Pauline & family, your cards made it from England today. Also a box full of cards (130 to be exact) from my friend Karen Kurtz and all the children at St. Paul's Interparochial School. Of course many cards from Timmy's classmates at Middletown Village School too.

Timmy also received a beautful card and certificate from the United States Coast Guard Station Sandy Hook. The certificate honors Timmy as a Boat Crewmember with the Coast Guard Station Sandy Hook. They also included some beautiful uniform pins. Thank you Commanding Officer Todd C. Stoughton for your kind letter and caring for Timmy and our family.

Timmy also got a visit from the Middletown Police Department today. Polce Chief Robert Oches, Deputy Police Chief Joseph Braun and Sgt. Steve Maguire came by loaded with cards and gifts from their department plus the Police Departments of Hazlet and Holmdel. Timmy received a least 100 more cards from all of them combined. Also sweatshirts, caps, a promotion to Corporal that came with a badge, movies, stuffed animals, balloons and so much more. Thank you all so much. This was very generous and I appreciate it very much. Timmy was polite and smiled, but he then closed his eyes. I hope I am not overwhelming him. I am trying to do the right things to bring out those smiles. So much for that low-keyed birthday!

Well tomorrow we are expecting Timmy's buddies the New Jersey State Troopers on their motorcycles to stop by. If all works out, there will also be a helicopter from the Coast Guard Station Atlantic City hovering over our house at about 1PM or so. This is all being done in honor of Timmy's birthday. Thank you so much Dan Wilbert, USCG, Virginia for arranging this for Timmy.

Last night I had the most wonderful conversation with Sonya, Angel Justis's mom. I was going to e-mail her but decided to take her up on her offer to talk any time, so I called Texas. Sonya, it was so good to talk to you. You are hurting from your own loss and you took the time to help and comfort me. Thank you, it helped so much. I look forward to our vacation along the beaches of Corpus Christi someday soon.

Extra prayers for Genna tomorrow as she has her follow-up appointment after surgery at Children's Hospital. My heart will be with you Kristin.

Thank you everyone so much for making Timmy's birthday so special. Alot of love has been put into those birthday cards and we shall treasure them forever.

I will update soon.

Love, Susan

Sunday, February 26, 2006 6:50 PM CST

Dear Everyone,

Timmy is hanging in there and had a weekend full of love from family and friends. We were not able to get his new medications yet because they were needed in liquid form. They were ordered and should be here tomorrow. Timmy continues to get morphine and ativan every 4-5 hours. Most of the time he seems comfortable. He is awake more then he is asleep. He still does not like to be touched much (this one is killing me)and cries so easily. The foley is working out so far. I have to make sure that Timmy does not see it. When he does well, lots of tears and he wants it out. I can't blame him for that one.

Saturday was a good day for me, it was so good to see my mom and dad. I was happy that they got to see Timmy. My mom sat next to Timmy for hours, just looking at him. Besides my mom and dad, Andrew and his girlfriend Kristen were here, Jason, Aunt Liz and her daughter Cindy. We all had a nice lunch together. My house is usually so quiet during the week. I think it was good for Timmy to have everyone around for a change.

When Timmy woke up today his right foot was terribly swollen and warm. I called the doctor on call from the Palliative Care Team at Children's Hospital. He thinks it is just edema but I will have to watch for redness and pain. This could indicate a bloodclot. We kept it elevated all day today and it seems better. I think the evil steroids are responsible for this too.

Today we had a visit from Dan Turi of 94.3 The Point radio station and his girlfriend Felicia. Felicia has been an incredible support to me lately. There is not enough she can do for me and Timmy. Felicia has arranged to have policemen from all over New Jersey mail Timmy birthday cards. This is the first time they have ever met Timmy. I was so happy that he smiled and waved to them when they came in. Timmy had his first birthday cake today, brought by Dan and Felicia. It was chocolate cake with strawberries and whipped cream. It was decorated with army and police guys and was delicious! It was so good to see you both today. Thank you for everything you have done for Timmy.

As of Saturday, Timmy has received 67 birthday cards and he still has 3 days until his birthday! This is so exciting for all of us.

What can I say about the hug-counter. Wow, over 500,000. There must be people who are not sleeping at night working on it. If we get close to 1 million, Andrew will put a 1 in the front of the counter.

Thank you to the Bradley Beach Police Department and Sgt. Stephen Fahnholz for the birthday gifts (caps, patches, shirts and toy police car) that you sent to Timmy today. Timmy loved everything and will be adding them to his very large police collection.

Timmy's website has become very well known lately. I am in awe of the number of hits and messages he gets each day. Thank you to everyone we know and do not know for the beautiful messages and prayers being sent our way. It is so important to me that people know and remember this brave, beautiful little boy. My biggest fear is that Timmy will be forgotten. This website has been an incredible gift to me. I have had the opportunity to share my son with so many people from so many places. Thank you all so much for caring for Timmy and for continuing to follow his story.

Mysterious gifts have been appearing in my mailbox and outside my front door for Timmy, for his birthday. People are leaving things anonymously. This is so funny because I think I am scaring people with my latest posts. Our family is so lucky to have such wonderful friends and neighbors who are just so kind, loving and giving. I am touched beyond words. It is things like this that help me believe that Timmy will always be remembered.

Please keep tough Timmy, strong Genna, sweet Gabbie, hopeful Kyle and Angel Justis in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

"WHAT CANCER CANNOT DO"

Cancer is so limited...
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot destroy friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot invade the soul,
It cannot steal eternal life,
It cannot conquer the spirit.

Friday, February 24, 2006 8:29 PM CST

Dear Everyone,

My mom instincts were wrong, but our trip to Children's Hospital was so helpful. Some medication changes have been made to make Timmy more comfortable. Timmy does not have diabetes insipidus like I thought, but a side-effect from long term steroid use. Long term use of steroids can increase your blood sugar and cause the symptoms Timmy has been experiencing.

We were fortunate today to meet with a wonderful neuro-oncologist, Dr. Belasco. She spent alot of time examining Timmy and speaking with us. Dr. Belasco thinks Timmy is in much more pain then he is letting on. She believes he is having nerve pains due to the tumor location in the thalamus. She prescribed a medication that is basically used for seizure control (which Timmy is at risk for) and also controls nerve pains in the body. We spoke about how easily Timmy cries, how sad he is. I think this bothered her the most. Her compassion was amazing and so what I needed right now. Timmy will also be starting a small dose of prozac in the hopes of making him feel better, bring those smiles back again. Lastly, we needed to make a decision on whether or not to put a foley catheter in. After much discussion it was decided to do it. My poor boy, of all the things I have seen him go through, this one upset me the most. Timmy handled it well. He cried but he settled down. I just felt so bad for him. Hopefully it will be a good thing for Timmy and us, if not, we will have it taken out.

Getting back and forth to the hospital today was not to difficult at all. Timmy was fine about going. We used his wheelchair and we were given a bed to use in the Day Hospital, which made Timmy much more comfortable.

Timmy is resting comfortably tonight. My son Andrew and his girlfriend Kristen are here and spending the weekend with us. Also my mom and dad are coming to visit tomorrow. They have not seen Timmy for quite a while and are so excited about coming. Having the family together this weekend makes me very happy. I am glad we can have this time together with Timmy.

The birthday cards are still coming in. As of today, Timmy has gotten 37 birthday cards! I do believe the hug counter will reach 500,000 by Timmy's birthday!

I wish everyone a wonderful weekend with their families. Hug and kiss your children alot. Enjoy each precious moment with them.

With Love & Thanks, Susan

Thursday, February 23, 2006 3:13 PM CST

Dear Everyone,

Timmy is doing well, our mornings continue to be the hardest part of the day. I have been concerned about a problem Timmy has been having for a long time. He is constantly thirsty, urinating excessively and has peeling, dry skin. My mom instincts tell me there is a problem. I have been trying to get that message across to hospice, the palliative care team at Children's Hospital and today Timmy's neuro-oncologist. I was told it was everything from dry air to his medication. From his symptoms it could be hormonal due to tumor growth or radiation effects. My research and that of my brother-in-law leads us to possibly diabetes insipidus. Timmy's neuro-oncologist wanted to put a foley catheter in Timmy to help with the problem. I on the other hand would like to treat the problem. I worry that they think that because he is on hospice, he does not need treatment anymore. Timmy needs to be made comfortable and if that means medication to correct a hormonal imbalance, then that's what I want. We are going to Children's Hospital tomorrow for a 10:30AM appointment for bloodwork and urine testing.

Timmy has not been out of the house for almost three weeks. He is so weak and can barely sit up. It will be difficult to bring him in. I so hope he is up to the traveling. I will let everyone know how it works out.

I never thought we would be going back to Children's Hospital again. It will be bittersweet. It will be wonderful to see all the nurse's again, but they are all so sad for us. I so wish it were different. When we brought Timmy home almost three weeks ago, I thought that he had just days left with us. He is still here and I hold onto the hope that I am getting my miracle, one day at a time.

Yesterday my friend Vicki, who is a nurse and has also done hospice nursing came to visit us. She was so helpful and just seeing her brightened up my day. While Vicki, Timmy and I were eating lunch, the music therapist came and played her guitar and sang songs for us. Timmy did good, he bopped his head to "Comin Round the Mountain" and "This Little Light of Mine". The music was definitely good medicine yesterday.

I have had an enthusiastic response to my request for birthday cards for Timmy. Once again, please no gifts, just cards. I really want to keep this a low-keyed birthday. So many people want to do so much for Timmy and our family, but I must insist that cards will be enough. I am truly starting to feel overwhelmed with the amount of phone calls again. It so takes away from my time with Timmy.

The birthday cards have started coming in already. I have also had three offers to make the best chocolate birthday cake. The winner is Ginny Smith, who I hear makes the best cakes in the world. She was so excited to do this for Timmy. Thank you so much Ginny.

Thank you again to all my wonderful friends who continue to hold me up. I love you all very much for being there for me.

Thank you to everyone who asks my permission to share Timmy's website. We must be careful where his website address goes. I have in the past had hurtful messages and I so do not need that right now. Thank you also for all the fantastic birthday messages for Timmy. I read them to him every morning.

Thank you for the prayers for Genna. She made it through her surgery just fine. I hope so much that the doctor's will find a new treatment that will get rid of those nasty tumors.

Continued prayers for Timmy, Gabbie, Kyle and Angel Justis's family.

With Love & Thanks, Susan

Birthday Cards for Timmy Pauxtis
Timmy will be 10 yrs. old on Feb. 29th

12 Buttonwood Road
Middletown, NJ 07748

Tuesday, February 21, 2006 3:01 PM CST

Dear Everyone,

It was around this time last year that I wondered how many more birthday's Timmy would have. Timmy's 9th birthday party was the most amazing party any boy could have wanted. Thanks to the New Jersey State Troopers and their SWAT Team, Timmy and his friends got to see many police vehicles and equipment up close. The best was the target shooting in our backyard. February 29th is Timmy's 10th birthday. Timmy is a leap year baby! We always celebrate non leap year birthdays on March 1st. This year his birthday will be quiet, it just needs to be. I plan on getting him the best chocolate cake I can find. I hope so much that my boy will turn ten. I want him to have another birthday.

Timmy does not need anything, he has so much already. What I would like to ask everyone is for birthday cards. Please send birthday cards to Timmy. On his birthday, we will open up all the birthday cards and I can show Timmy how much he is loved, and how special he is. Send the cards to: Timmy Pauxtis 12 Buttonwood Road, Middletown, NJ 07748. Thank you so much!

Yesterday was a good day. Timmy had some friends over. Timmy still wants to see his friends and his friends want to see him. It is so hard to know what the right thing is to do. Timmy's friends know that he is so sick. I worry about them too. I know how hard this is for these children. The boys stayed for about 45 minutes with their moms and it went well. The boys sat in the sofa next to Timmy and talked to him. Timmy answered sometimes or just nodded his head. The boys were wonderful and I think it all went well.

Today, we got a surprise visit from our friend, Trooper Bob Shaughnessy. Bob always has some great stories to tell Timmy about all the raids their SWAT Team does. He even brought in some guns that he had out in his car to show to Timmy. He went out of his way to make Timmy smile. Thank you Bob for caring so much about Timmy. It means alot to our family.

Timmy's friend Sarah left school early to come to visit him today. The early part of the day is better for him. Sarah has been so upset about Timmy being sick and so wanted to see him. My heart is not only breaking for my son, but for all these children that have become so special to me. I love them all so much. I know they will be okay though, they have wonderful parents to take care of them.

Our mornings continue to be the hardest here. Timmy wakes up agitated and cries so easily. Once his medicine is in him, he begins to settle down. This afternoon he is not feeling well, he is sleeping alot and is telling me he is just not feeling well. He seems to be rubbing his head alot, but is not complaining of head pain. He continues to eat and drink well and thankfully sleep well.

Please say extra prayers for my friend Kristin's daughter Genna today. Genna had a biopsy today because her tumor is changing and not responding to treatments. We need to find a cure for brain tumors, it is so unfair what these children go through. If possible, please leave messages of support for her family at www.caringbridge.org/nj/gennahenna

I will update soon.

Love, Susan

Sunday, February 19, 2006 7:25 PM CST

Dear Everyone,

On Friday night we started using the morphine on Timmy. Jay and I really struggled with going right to such a strong narcotic drug as morphine. After talking many times with the Palliative Care Team at Children's Hospital, we decided it would be the right thing to do. Timmy will also be taking 0.5 mgs of ativan too. The morphine is suppose to be a very low dose of 5mgs. Timmy slept very deeply Friday night. He was a bit agitated after he woke up Saturday morning, but the medicine had been out of his body for 12 hours. I have been giving Timmy the ativan and morphine every 5-6 hours now. I think this schedule will need some fine tuning still. He still becomes restless and cries easily between the 4th and 6th hour. Overall, Timmy was more relaxed and had little pain this weekend.

On Saturday morning I was given such a wonderful moment with Timmy. One of his shows, Teenage Mutuant Ninja Turtles came on. The music was playing at the beginning of the cartoon and Timmy started to bop his head and wave his hand in tune to the music. He was smiling and a part of my silly Timmy had come back. I was so happy to see him happy that I cried. Of course I grabbed my camera and took a few pictures of him. I will have Jason post them tomorrow.

Timmy slept well last night. I have enjoyed my time sleeping in my bed with him. I am sure all parents watch their children sleep. I watch Timmy sleep and I study all the different parts of his face. I love how his lips purse together and how long his eyelashes are. I try to burn the details of his face deep into my memory.

Today we had to deal with some nasty, nasty constipation problems. It had gotten to the point where we needed to use suppositories. He hated it and cried so much. He was so mad at me but we eventually solved the problem. I have to really concentrate on feeding him high fiber foods and using a powder called miralax daily.

Timmy's Uncle Tom, Aunt Joanne, Kristin and Derek came to visit Timmy today. Timmy was happy to see them. He gave his little wave and crooked smile. My neice Kristin and nephew Derek are great kids. I love how affectionate they are with Timmy. It was good to see them all today.

Jason went flying today. He is now certified to fly a Cessna 172. This is a four seater plane. I am so happy that he has something that allows him to escape. It was really hard letting him go today. I just worry about Jason and Andrew so much more now.

Jay is off tomorrow. The hospice nurse is coming and hopefully it will be a good day. My big sofa is in place for sleeping tomorrow night.

Thank you everyone so much for continuing to check in on Timmy. I will try to keep his journal updated every other day now.

As always please keep Timmy, Genna, Gabbie, Kyle and Angel Justis and his wonderful family in your thoughts and prayers.

With Love & Thanks, Susan

Friday, February 17, 2006 7:16 PM CST

Dear Everyone,

I so wish I had some better news to share with everyone, but Timmy continues not to be well. He cries so much and it is a heart-wrenching cry. It is a cry I have never heard from him before. I believe Timmy is in pain and I set about to get some medication changes today. As of today, Timmy has started on a small dose of morphine and an increased amount of ativan. The medicine makes him sleep most of the day, and that is not what I want. I want to be able to talk with him and look into those beautiful blue eyes. I want my moments with Timmy. I was told that after a couple of days on the medicine, he will build up a tolerance, and stay awake more.

It is so difficult to see Timmy this way. For 13 months Timmy was so brave and determined. He never complained and did just what he needed to do. I almost feel like he has given up and is just so tired. Who could ever blame him for feeling this way. He has been through so much for a child. This evil tumor is slowly taking control of his body. The hospice nurse asked me today if I wanted to put Timmy back in the hospital. I have been taking care of Timmy by myself during the day and she knows it is wearing on me. It is wearing on me physically and emotionally, but Timmy will stay home. I can and I will take care of Timmy right now and if needed, Jay will stay home or we will bring a nurse in. I just hope so much that the new medicines will bring Timmy some comfort.

Some of Timmy's frustrations have also been his lack in being able to communicate. He can never finish a sentence because he cannot find the right words. My friend MaryPat Harrington came up with a wonderful idea. MaryPat is a sign language teacher and she knew of a machine that could help Timmy communicate with us better. It is a little bigger than a laptop computer and has about 40 pictures on it of all different things. When you press the button our own recorded voice says things like "I have pain", "I am hungry", "Turn on the TV", etc... It really is cool and I think it should be a help to Timmy. Thank you so much MaryPat for coming up with such a great idea.

Timmy also had two of his teachers come to visit him today. His second grade teacher Mrs. Gibadlo and his teacher this year Mrs. Bauer. He was somewhat awake when they came into the room and managed a wave and a little smile. I know he was happy to see them. It's been much too long since he's seen his teachers and friends. I know some of his friends still want to see him. I will hopefully try to arrange something this weekend. It all depends on how Timmy is feeling. I so want to lift his spirits. I hope by seeing some of his friends, even for just a few minutes, it will.

Thank you to everyone for worrying so much about my back and lack of sleep. I have been offered aero-beds, futons, and heating pads. This weekend the boys will put the sofa where the love seat is now. That will definitely make for better sleeping. On Friday and Saturday nights, Timmy sleeps with me in my bedroom. He loves sleeping there and Jay is home to carry him down the stairs in the morning.

Thank you again to everyone for your continued support of our family. I love how so many of you are determined to keep that hug counter going up. Please know that I tell Timmy every morning how many hugs he has, and that makes him smile.

I will update soon.

Love, Susan (proud mom from Timmytown)

Wednesday, February 15, 2006 3:03 PM CST

Dear Everyone,

Timmy had such a good day yesterday. He was awake most of the day, alert, eyes were focused and he actually let his hospice nurse examine him. We were both amazed at how good he looked and acted. I almost thought maybe he got a Padre Pio miracle. Unfortunately as the evening came, Timmy started to cry so much and tell me he just didn't feel good. He never complains of pain. He prefers to lay back, sitting up disturbs him. For just a little while yesterday I started to hope again. I even thought about starting chemo again. I truly am driving myself crazy.

Timmy slept well last night. Mom on the other hand sleeps on a love seat right next to him. I sleep with my legs draped over the arms of the chair. I have such a backache, but I need to be close to Timmy. I can hear him breathing from where I sleep. I can keep such a close eye on him.

This morning did not start off well. Timmy still did not feel good and cried so much. I always get him cleaned up and dressed each morning. He was so unconsolable this morning that I just started to cry with him. I told him I was sorry that he was so sick, that it made me cry too. I told him I was so proud of him and that he was being so good and brave. He settled down and has been sleeping on and off all day.

The social worker from the Visiting Nurse's Association has been bringing me books to read about "Talking to Children About Death" and "Helping Children Grieve". Most of the books state that many of us hesitate to talk about death, particularly with young children. It also says that without talking, we are more limited in our ability to help. I have had such a problem with this. Timmy has always been so sensitive and quiet. He always liked mom to do his worrying for him. I have tried to ask him how he feels, are you afraid? Timmy does not want to talk about it. He always begins to cry. I so want to help him but I also want to protect him, do his worrying for him. My mom instincts tell me that Timmy will ask if he wants to know.

We are doing good here. Andrew and Jason are busy with school and keeping up with their work. Jay goes to work everyday and comes home by 3PM. This year Jason has SAT's, he needs to be able to study and concentrate. I think it is so hard for him because he see's everything that is going on with his brother. Jason wants to go to Embry-Riddle Aeronautical University in Daytona, Florida. He must get good grades to get in. I hope he will be okay.

Once again, thank you so much to everyone for the home-cooked meals, chocolate, messages, e-mails, gifts, balloons and cards that you send to Timmy. I like some of the messages that say we live in Timmytown. That makes me smile:-)

Please keep Timmy and his friends, Genna, Gabbie, Kyle and Angel Justis in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

Monday, February 13, 2006 2:47 PM CST

Dear Everyone,

The snow did indeed come, all of about 18 inches of it. On Sunday morning, I opened the blinds completely in Timmy's room, so he could look at the snow. It was a blizzard, covering everything beautiful white. I was so glad that Timmy got to see it and enjoy it.

We have not had a visit from the hospice nurse for a few days. Last time she was here, Timmy cried. She does not want to scare him, so they are just calling to check in every morning and night. The nurse will definitely be here tomorrow. I was worried during the storm. All the what if's. What if Timmy needed his nurse and they couldn't make it here? I was reassured that they have private security 4-wheel drive vehicles, fully equipped that could get them here if needed. Thankfully all was calm here during the storm.

Timmy's days seem to be falling into a pattern. He wakes up in the morning quite agitated, crying. He is eating and drinking well. He settles down and stays awake until early afternoon until he starts dozing off again. His eyes still flutter and twitch and he is frustrated because he cannot tell us what he wants. I worry about his eyes, they do not seem to focus on things. He will not admit to having any vision loss. He is still getting tylenol and a small amount of ativan for comfort. He is always interested in having dinner. After dinner he becomes restless again, crying and we settle him down with all his pillows and blankets for the night. He loves to sleep on his side. I still get my share of kisses from him and crooked smiles.

Something I feel special happened today that I would like to share with everyone. Everyone knows that I admit to having doubts with my faith lately. As a mother fighting for her son's life, I will do anything to try to save him. I allowed some special people to come into my home today. It came to my attention that a family in Middletown had been for a long time having prayers said for Timmy, at the Padre Pio Center in Barto, Pa. Padre Pio is a Saint. He used his amazing gifts to bring people closer to God. He loved children and spent his whole life trying to relieve suffering and pain.

Leona and Rich from the Padre Pio Center drove all the way down from Barto, PA today (over a three hour drive) to bring a glove relic of Padre Pio's for Timmy to touch. Timmy's Aunt Liz, Jason and I were here with Timmy when they arrived. Leona and Rich were kind, gentle and spoke to us about the miracles performed by Padre Pio. They then let Timmy and the rest of us touch his glove and we said silent prayers. Timmy was good, he cried a little but it was not frightening at all. I told Leona and Rich I wanted to keep this all very low-keyed and they completely understood. They were here for about one half hour and then returned back to Barto, Pa. I feel very good about what we did for Timmy today. I hope so much that one of Padre Pio's miracles are meant for Timmy.

Thank you everyone for all the wonderful messages, cards and prayers. I am so proud to share my sweet, brave son with everyone. I am some how hanging in there. I take one minute at a time. The uncertainty of a child in hospice is so difficult, always wondering how and when.

As always please continue to keep Timmy in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

"FOOTPRINTS FOR CHILDREN"

The Lord will always walk with you
along life's blessed beach,
His footprints there beside your own,
always within reach.
Two sets of footprints,
side by side,
from dawn to setting sun,
Yet there may come a day,
my child,
When you'll see only one.
But do not think the Lord
has left you-
Nothing could be more wrong.
It's just that He has
picked you up,
to carry you along.

Saturday, February 11, 2006 5:10 PM CST

Dear Everyone,

Thank you so much to everyone who came to share in our Mass for Timmy today. We had 150 blue bows with a heart on it and there were only 25 left at the end. So best estimate is that there were at least 125 family, friends and children there. The love and support shown for Timmy was incredible and it gives us so much strength. The two best parts of the Mass were when my friend Maria Petersen said a special prayer of healing and strength for Timmy and our family. Thank you Maria, that prayer will remain in my heart forever. Also, I went up for Timmy during the annointing of the sick. As Monsignor Walsh rubbed the oil on my forehead and hands, he looked into my eyes and held my hands. It was a very powerful moment for me. I think he felt my pain and his touch comforted me.

During the service, I was almost afraid to look behind me. It is so hard to make eye contact with everyone. I know by just looking at me, people hurt and they cry too. I heard so many sniffles in the Church. I could never thank everyone by name who was there, but please know I am so grateful.

When it was time to leave the Church, I was given so many hugs and my arms were filled with gifts and cards to take home to Timmy.

I must just thank a few people for helping make this day work. My friend Sue Griffin, RN who watched Timmy so our family could attend the service. My friend Laura Puck, for making all the bows with hearts for everyone at the Church. All my wonderful girlfriends for being there for me, standing beside me and holding onto me. To my other boys, Jay, Jason and Andrew for being strong and helping me keep it together.

Timmy has had a rough two days. He is weaker, sleeps more and still cries sometimes and becomes agitated. He mostly lays in his hospital bed, sometimes watching TV. His appetite is good and he is drinking well. He is only getting Tylenol and Ativan for comfort. He still has slight twitching and fluttering of the eyes, but it does not seem to bother him. I often lay with him and hold him and he smiles at me. This child is so deep in my heart. When I lay with him, I can actually, physically feel the love inside of me. It feels like pain in my heart, but it is love.

We are expecting a lot of snow tonight and tomorrow. The room Timmy is in has skylights and I can't wait for him to watch the first beautiful snowfall come down.

As always, please keep Timmy, Genna, Kyle, Gabbie and Angel Justis's family in your thoughts and prayers. I will update soon.

With Love & Thanks, Susan

PS. How could I forget. It was so awesome hearing Timmy's "Song of Love" last night on the radio! I could hardly contain myself when it came on. Timmy loved it! We got some smiles from that one. Thank you to Dan Turi, Felicia and 94.3 The Point for making this happen.

Friday, February 10, 2006 9:17 AM CST

Dear Everyone,

Just a quick morning update. Our good day yesterday did not last very long. Later in the afternoon, I noticed Timmy's eyes were twitching and his eyelids fluttering. This was happening awake and asleep. When the hospice nurse was here she noticed it too. She also said his blood pressure and heart rate were lower. Our hospice nurse called the palliative care team at Children's Hospital and they said it was seizure activity. She said to watch him carefully. My brother-in-law in California, Dr. Greg Pauxtis, Neurologist, was a mind reader because he just happened to call. He advised us to give Timmy 0.5mg of Ativan, because we must break the cycle of the seizure, before it could turn into something more. We gave Timmy the Ativan at about 7PM and within a half hour his eyes stopped twitching and fluttering. I am now giving Timmy just half of the original dose of Ativan, every couple of hours to keep any seizure activity under control.

Timmy slept through the night last night and had a good breakfast this morning. He seems a bit agitated though. I think the Ativan will help to settle him down.

My son Andrew is coming home today from College for the weekend. We all plan on going to Timmy's Mass tomorrow. I will not be bringing Timmy, he is just not up to it.

Reminders:

Dan Turi of 94.3 The Point will be playing Timmy's "Song of Love" tonight at 6:15-6:20PM. For all of you who cannot get the radio station, go to their website; www.943thepoint.com and click on Listen Live!

There is a Mass tomorrow, Saturday, Feb. 11th at 1PM at St. Mary's Church in Middletown. There will be special prayers said at this Mass for Timmy by Monsignor Walsh and my friend Maria Petersen. Let's hope the snow holds off until the evening.

With Love & Thanks, Susan

Thursday, February 9, 2006 7:03 AM CST

THURSDAY UPDATE: 4:00 PM

I just spoke to Dan Turi of 94.3 The Point and he will be playing Timmy's "Song of Love" tomorrow, Friday at about 6:15-6:20PM. For all of you who can not get the radio station, go to their website: www.943thepoint.com and click on Listen Live!
------------------------------------------------------------------------------

Good Morning,

It is a good morning here, early too. Timmy woke up blue-eyed and happy this morning. He is eating a waffle with syrup as I write. Sometimes I look at him and wonder, can this all be a mistake? I know it's not. Timmy looks so healthy in his hospital bed, but when he tries to move, stand, speak it becomes so real. Timmy is so very sick. As I sit here at the computer, I glance my eyes over to his hospital bed to look at him. Timmy is watching TV, but just my glance distracts him to look back at me. My boy and I are so connected.

Yesterday was a good day. Timmy seems to be tolerating the 4mg of steroids a day. He sleeps on and off during the day. I do not believe he is in any pain. I am amazed and grateful that he is not. I have been giving Timmy tylenol every 4-6 hours just to keep him comfortable.

Yesterday, through the Visiting Nurse's Association a music therapist came to visit Timmy. Meghan came walking in with a guitar strapped to her back and a bag full of instruments. Meghan sat next to Timmy, took out her guitar, and starting sing a hello Timmy song. She had the softest, sweetest voice. Timmy acted shy and kept his eyes closed and listened. Meghan took out all her instruments and showed them to Timmy. She gave him something that was egg-shapped that he could shake and rattle with. Jay and Jason were home too. We each took an instrument and made our own little band. We played a song called the Sleepy Day Song together, since Timmy continued to keep his eyes shut. He enjoyed it though, I could see him smiling. I think music therapy is a wonderful idea.

Timmy slept well last night, even though he was up very early this morning. We will be having a visit from the hospice nurse today. I hope it will be another good day.

As always thank you for the wonderful messages of support for Timmy and our family. You have no idea the smiles you bring to all of our faces with them. Thank you to everyone who has sent cards an gifts too. A food chain has started for our family again, twice a week. It helps so much for it allows us all to spend more time with Timmy. Thank you again to all my friends for doing this for us.

Keep those hugs coming. I tell Timmy every day how many hugs he has.

A reminder: There is a Mass for the sick at St. Mary's Church in Middletown. The Mass will be on Saturday, February 11th at 1PM. Monsignor Walsh will offer a prayer for Timmy as a special intention of the Mass. I am working on something, little ribbons for all of us to wear in Church to show our support for Timmy.

Please continue to keep Timmy in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

Tuesday, February 7, 2006 6:42 PM CST

Dear Everyone,

First and foremost I would like to invite everyone to a Mass for the sick at St. Mary's Church in Middletown. The Mass will be on Saturday, February 11th at 1PM. Monsignor Walsh will offer a prayer for Timmy as a special intention of the Mass. Miracles do happen, but if a miracle is not meant to happen for Timmy, let us pray for his peace and comfort. Let us pray for Timmy to not be scared. Let us pray for strength for my family to get through this. Thank you to my friend Maria Petersen for arranging this for Timmy and our family. Once again, let us "Storm the Heaven's" with the power of prayer.

The last two days have been a true rollercoaster ride. Yesterday, Timmy was more awake and ate pretty well. He stays in his bed all day because he is so weak. He cannot move his right arm or leg at all. The nurse practitioner from Children's Hospital called to check in on Timmy and our family. We are going to try to drop his steroids again. The steroids cause him to be irritable, jumpy. I need to be close to Timmy, to be able to hold him without him pushing me away. I hope the steroid drop will help with this. I am thankful that Timmy has good nights, he sleeps through the night with no problems. I have been sleeping on the sofa next to him. I do get up to check on him a few times a night, but I have been getting some sleep.

Today seemed like a step backwards. It may be the decrease in steroids but Timmy slept on and off most of the day. He did not eat much today. He was also very quiet today, not speaking, only nodding yes or no. Jay and I got him into a warm bath tonight and he seemed to relax and enjoy it.

We met our regular hospice nurse today. Her name is Peggy and I like her alot. She has taken courses at Children's Hospital with the Palliative Care Team, so she has knowledge and experience with children. It really makes a difference, because children's needs are so different. I also got our comfort pack today. It is filled with all the drugs that may be needed to make Timmy comfortable. It came by Fed Ex. I thought it was a gift for Timmy. When I saw what it was it made me sick. I hope we never have to use it.

I have noticed that so many more people are visiting Timmy's website. Thank you and welcome. I appreciate all your messages and caring words of support for Timmy and our family. I am grieving my friends, our family is hurting. I am leaning on all of you right now and so appreciate the support from all of you.

Timmy's hug counter has gone crazy, so many hugs! I think I will put one in for me. I could use all those hugs too!

To my new friend Felicia, thank you for coming into my life. Your emails mean so much to me, your words touch me and give me good thoughts to hold on to. Felicia's boyfriend is Dan Turi of 94.3 The Point. Dan may be playing Timmy's "Song of Love" on the air soon. I am so excited about this and will let everyone know when I find out when.

Please continue to keep Timmy, Genna, Gabbie, Kyle and Justis's family in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

Sunday, February 5, 2006 9:17 AM CST

Dear Everyone,

We are home and it is so good to be home with my boy. Coming home yesterday was difficult. The weather was just awful and Timmy was agitated. The doctor gave him an ativan for the ride home which let him sleep most of the way. As we got closer to the street near our house, we were greeted by a big surprise. Our friends had decorated all the trees with yellow ribbons and bows! The outside of the house had bouquets of yellow balloons with welcome home balloons tied all over the place. It was an overwhelming sight that just made me cry. I woke Timmy up to take a look at all of it. Thank you so much MaryPat, Rosemary, Maryalice and all the children who came out in the pouring rain to do this for Timmy.

When we got into the house, we were greeted with at least 25 bouquets of balloons and many gifts that were waiting for Timmy. I was worried about Timmy liking his new hospital bed, but when we layed him in it, he went aaah and gave me those happy eyes. The hospital bed has an inflating, massaging, bubble mattress that Timmy just loves. The family room looks beautiful filled with balloons, toys, stuffed animals and gifts of love from so many people.

We noticed last night that Timmy had some blood in his urine. He also was so much weaker because of the ativan. He could barely speak or stand up straight. We will only give him half of the ativan now. We are trying to get him to drink alot to flush the blood out of the urine.

We had our first visit with our hospice nurse. She is just a weekend nurse and not Timmy's regular nurse. The meeting went well and she did Timmy's vital signs. She left us many papers on the dying process, which I have not even looked at yet. I still have not signed a "Do Not Resuscitate". I know I must, but I still can't. The hospice nurse will be back again today to take a look at Timmy. As of Monday, we will have our "comfort pack" which will be filled with all the drugs we need to give to Timmy in case of seizures or pain. I will be honest and say that I am scared to death. I hope and pray that the hours/days that lead to Timmy's passing will be painless and peaceful.

I am hoping for quiet days ahead of us. I would appreciate e-mails instead of phone calls. I know you are all thinking of us, but once again I so want this private time with Timmy and our family.

I would like to say thank you so much to some incredible, caring nurses on 4 South at Children's Hospital. Thank you, Anita, Colleen, Kelly, Erin, and Barb. You gave Timmy and our family the best care, we will never forget you and appreciate your kindness and being there for us.

There are two special people I would like to say thank you to for being there for us also. Brett is the Oncology Social Worker. His job is hard, heartbreaking sometimes, but he does it so well and cares so much. Kim is the child-life specialist who everyday works to keep our sick children happy. Thank you for the many smiles you have brought to Timmy's face and to ours too. Kim and Brett gave us a great picture of Timmy with his blinking red nose taken two days before Christmas. I will have Jason post it on the website later in the day.

Please continue to pray for peace and comfort for my beautiful Timmy and I will update soon.

With Love & Thanks, Susan

Saturday, February 4, 2006 8:53 AM CST

Hi Everyone,

Hopefully we will be going home today. The plan is to have Timmy discharged later in the day. Right now Jay is at home waiting for our hospital bed, etc to be delivered. He will come back when all is done and bring us home. We are rearranging some furniture in our family room, so we can set up a nice area for Timmy.

Timmy's Godmother, Liz came to visit him yesterday. He had some good awake time with her and ate pretty well. Later in the evening he became agitated and cried alot. He just could not get comfortable. He was given tylenol a few times yesterday to help with his discomfort. Later in the evening Timmy's heart rate climb up very high and his blood pressure dropped low. The resident here had him put back of IV fluids and that seemed to help. It was late, but Timmy then did sleep peacefully till this morning.

Timmy had McDonald's pancakes and some sausage for breakfast. He is sleeping again. I am waiting for Timmy's doctor to come by to see him. He is on call this weekend and I would just like to talk to him and say goodbye. Timmy's doctor has been a part of our lives for 14 months now. I know he gave Timmy the best treatment possible, but oh how I wish he could have cured him.

This transition home is bittersweet. I am happy to bring Timmy home but heartbroken that this is the end to our brain tumor journey. I wish so much it could have ended differently. I have so many emotions going through me right now, I could never truly express them.

I would ask everyone to please call us before you come by to visit when we are home. This time we have with Timmy will be quiet, private family time now.

I love all of you so much for standing by us during this most difficult time. Thank you from the bottom of my heart.

I will update soon.

With Love & Thanks, Susan

Friday, February 3, 2006 8:12 AM CST

To My Wonderful Family & Friends,

Yes, it was another peaceful night with Timmy, another night I got to hold him close to me.

Yesterday was a good day, my boys are all together here. It is so good to have our family together around Timmy. The boys are good for Timmy, they make him smile, so do the nurse's! Timmy has always liked the girls. He is such a love-bug, so generous with his hugs and kisses. Timmy and I share something special that he calls "wedding kisses". He likes to kiss me on the mouth for a few seconds and then he would go aaahhh. Those will be such special memories for me.

Yesterday, Timmy slept most of the day. He awoke a few times to take a few sips of juice or soda. We got him to eat some skittles candy last night. He becomes agitated sometimes and cries. I don't think it's pain. Timmy wants to go home. We may be able to go home as soon as tomorrow. Most of the hospice details are underway. I just don't know if everything can be in place for tomorrow. It is time to bring Timmy home. I want him surrounded by his family, friends, and all his favorite things that bring him comfort.

Also yesterday a social worker here met with Andrew and Jason to talk with them about what is going on with Timmy. She offered to listen and answer any questions that they may have. Afterwards she told me that my boys were just fine, they understood what was happening. She told me their biggest worry was that they were worried about me. When she told me that I cried. I really do have great sons.

Today Timmy had a little bit of bagel and cream cheese for breakfast and some apple juice. We will be taking him for a stroll in his wheel chair soon. He is sleeping deeply right now. Once again thank you for all the messages of support and love for Timmy and our family. A special "I love you" to my friend Vicki who showed up late last night to visit all of us. It was so good to see you, talk and cry with you. Your being here helped me more than I could say. The gifts continue to come in and I always wake Timmy up to open them or see them. It truly makes him happy.

So maybe we will be going home tomorrow. I will let everyone know as soon as I can.

I will update soon.

With Love & Thanks, Susan

Thursday, February 2, 2006 10:08 AM CST

Dear Everyone,

Timmy had a peaceful night, sleeping so deeply. I layed with him and held him through the night.

This morning, Timmy showed us those beautiful blue eyes and woke up for a while. He had some breakfast and juice. Jay and I picked him up out of bed and put him in a wheelchair, to take him for a walk. Along the way, so many people we know and do not know stopped to talk to Timmy. He would open his eyes slightly and give a little smile. That's my Timmy, so sweet, kind and polite.

Timmy is back in bed sleeping deeply again. The doctors cannot tell us how much time he has left. It could be soon, it could be weeks. It's up to Timmy and his body and right now my boy is fighting. His vital signs are stable.

Andrew will be coming to the hospital today and our family will all be together. Everyone is so supportive and kind here. Some of the nurses from the Oncology clinic have come down to visit Timmy. They have cried with us. My boy has touched so many lives and I am so proud of him.

Nothing is settled with hospice yet so we will remain here. I have a computer right outside Timmy's room so I will try to update as often as I can.

Thank you again for all your support, prayers and for caring so much about Timmy and our family.

Love, Susan

Wednesday, February 1, 2006 5:36 PM CST

Dear Everyone,

We have been transferred down to 4 South (Room 4S06). I am happy to be out of the PICU. Our room here is big, quiet and the nurses are wonderful. Timmy is still on a monitor and receiving medications. He has been on a high dose of steroids for almost 72 hours now. The changes we had hoped to see have not happened. Timmy was awake for a short time this morning and had some breakfast. He was much too tired to eat lunch and has been sleeping deeply since. He has had multiple neurological exams and his body is definitely weaker. He became agitated this afternoon, crying for a short time. I do not believe he is in any pain. There are medications in place, in case he does have pain. We have been asked to consider signing a DNR (Do Not Resuscitate). Too many decisions, it is all happening so quickly, and is so overwhelming.

We met with the palliative care/hospice people this morning. They are a group of caring, supportive people who will help us do everything to transition Timmy from here to home. We can choose to do hospice at the hospital too. I am not comfortable leaving the hospital with Timmy yet. His needs are so much more than before. Everything must be in place at home, before we come home.

Yesterday, my wonderful friends MaryAlice and Sue came to Children's Hospital to visit. Their car was filled with balloons, stuffed animals and cards for Timmy. It was unbelievable! The balloons and gifts keep coming in. Thank you everyone so much. I love that when Timmy opens his eyes, he will see all these special gifts that are for him. His room is filled with love from so many people.

It is now 6:40PM and Timmy has not awaken since this morning. The doctor says Timmy may be slipping away from us. Jason is here with us and Andrew will be coming in from school tomorrow. This is so difficult and our hearts are breaking. Please pray for our boy and I will update again as soon as possible.

With much love & thanks, Susan

Tuesday, January 31, 2006 9:36 AM CST

Dear Everyone,

First, I will start off by saying that the the increased amount of Decadron (steroids) have given Timmy a few awake moments yesterday and this morning. We managed to get him to eat some of a Mc Donald's happy meal too.

We met with our team of nurse practitioner's and Timmy's doctor a few minutes ago. Our plan is to watch Timmy over the next few days to see if we get a better period of wakefulness during the day. If this happens, and Timmy become more alert, we will consider starting a chemotherapy called CCNU. We spoke with a Neurosurgeon about whether a shunt would help Timmy with some of his symptoms. It was decided it would not, because Timmy does not have fluid build-up causing hydrocephalus, he has tumor growth covering his ventricle. A shunt would be too dangerous and not advised at this time.

During the next few days we will meet with the palliative/hospice care team here at the hospital to help us get set up with what we will need at home to take care of Timmy. Hospice DOES NOT mean giving up, it is support in caring for the needs of Timmy and our family.

We are truly taking this one day at a time. The decisions that Jay and I have had to make over the last two day are heartwrenching. First and foremost, Timmy will not suffer. Right now he is in no pain and so peaceful. I have been laying in bed with him holding his hand, kissing him and telling him I love him over and over again.

Thank you so much to everyone for the wonderful messages of support. We need them so much. I will update again when I have a chance. Sending much love and thanks to everyone who loves our Timmy as much as we do.

Love, Susan

Monday, January 30, 2006 1:38 PM CST

Dear Family & Friends,

At this time, all I can tell everyone is that Timmy's condition has deteriorated quickly. He is still in PICU and will remain there. He is not awake and on many medications to keep him comfortable. We are in the process of making decisions with the doctors. Thank you all for your thoughts and prayers. Timmy is the most beautiful, brave, loving boy. I will update soon.

Love, Susan

I will call everyone as soon as it is possible.

Sunday, January 29, 2006 9:08 PM CST

Dear Friends,

I just spoke with Susan again and it is with her guidance that I write this.

Timmy was admitted to the Pediatric Intensive Care Unit at Childrens Hospital in Philadelphia tonight for increasing neurological symptoms. His doctors will meet in the morning to discuss his treatment.

Susan and Jay are asking for you to continue praying for Timmy.

Once again, the Pauxtis Family appreciates your continued support.

Sincerely,

Sue Griffin

Sunday, January 29, 2006 11:06 AM CST

Dear Friends,

I just spoke with Susan and with her directions I am writing this post.

Timmy has not been feeling well for the last day or so. Today they called his Doctor who asked them to bring Timmy in to Childrens Hospital to be evaluated. Susan, Jay and Timmy are on their way to the Hospital now. Susan asked me to ask all of you to please pray for Timmy.

The Pauxtis Family appreciate all of your continued support.

Sincerely,

Sue Griffin

Friday, January 27, 2006 4:13 PM CST

Dear Everyone,

Thank you Sgt. Ambrosio for the exciting preview! I know everyone was waiting. Now, on with the details of the day. WOW!!! Our day began when Timmy, Uncle Tom and I were picked up in an unmarked StateTrooper car. We were very impressed because the Troopers were dressed in their full uniforms. We drove to the Holmdel NJSP Barracks and were met by four of Timmy’s Motorcycle State Police friends. The Troopers were sitting on their bikes waiting for us, ready to go. It was probably in the mid-20’s yesterday, windy and just freezing. It was such a cold day to be on a motorcycle. These Troopers bared the cold to give Timmy his police escort. Off we went down the Garden State Parkway with four police motorcycles in front of us with lights and sirens going, leading the way! Every car we passed tried to look into our window to see who the important person was inside the car. Timmy had so much fun watching all of this going on, he was very happy, smiling so much.

Fort Dix is huge! We were to meet Colonel Harvey and his soldiers at the U.T.E.S. building. As we pulled up to this building we could see tanks and other military equipment all around. We were met there by a lot of men and one woman all dressed in uniform who took us to a meeting room. I brought a wheelchair for Timmy to use because I was concerned he might get tired. Once in the meeting room everyone gathered around (the State Troopers stayed too) a table that was filled with lots of items that were for Timmy. Timmy was first presented with a "Certificate of Appreciation" in recognition of being promoted to Sergeant First Class. He also was presented with a plaque that said “From all the soldiers at U.T.E.S. Your courage through this time in your life is a credit to yourself and all the soldiers who ever said “I can” and we know you will be victorious in all the battles throughout your life. We salute you”. Timmy also received medals, pins, an army jumpsuit, a helmet autographed by all the soldiers. He received a book from the Colonel about M1 Abrams tanks with pictures of the tanks in action. There were also bags filled with t-shirts, water bottles, an American Soldier movie, a football, mugs and so much more. There was one item on the table that was covered with a blanket. We were all very curious as to what was under that blanket. Much to our surprise and Timmy’s delight it was a huge remote-controlled M1 Abrams tank. This tank is about 3 feet long and has a 12 volt rechargeable battery. It moves very quickly, has a turning turret, shoots missiles and makes machine gun sounds. This wonderful group of soldiers took it upon themselves to go out and buy this for Timmy. I would like to thank each and every one of you for doing this for Timmy. It was so generous and as of today, Timmy is having so much fun with it.

Next, we were all taken into the garage where they had brought in a tank so we did not have to stay out in the cold. We all took a tour of the tank on the outside and then Timmy was offered a ride in the tank. Of course he said yes! Getting Timmy up onto the tank and then down into the hatch was difficult, but these great soldiers got him in. They offered for me to go along for a ride but I sent Uncle Tom instead. We all had to wear earplugs before they started up the tank. Off they went out of the garage and down the road doing about 40 mph. We saw a blast of white smoke in the distance and the Colonel joked around about how they were probably doing some target shooting. I stood outside in the freezing cold with the Colonel for about a half hour and the tank never returned. I started getting worried and then I found out that the tank broke down and they needed a tank tow truck to go get them. Well they eventually got the tank running again and they did come back. The white cloud of smoke was them trying to clear the fuel line. My poor brother’s body was in the tank but his head was sticking out. He was pretty dusty and frozen when he got back. It was a lot easier getting Timmy into the tank then out, but these great soldiers did it again. The public relations person at Fort Dix took lots of pictures. I even climbed up onto the tank, sat on the hatch and took pictures with Timmy and the soldiers. That was no easy feat for me because most people know I always wear clogs. After the tank ride we returned to the meeting room where the Colonel spent some more time speaking with Timmy. We started packing everything up to go and realized there was no room in the car to get the remote controlled tank home. Well the State Troopers saved the day by calling another Trooper who came by in his car, picked up the tank and brought it home for Timmy. We proceeded to have another lights and sirens State Police escort home with a very tired, but happy Timmy.

How do I begin to say thank you to everyone for making Timmy’s dream come true. I want to say thank you from the bottom of my heart to Sgt. Ambrosio and Colonel Harvey and everyone else involved in putting this special day together for Timmy. They say that when your spirit is strong it gives you the strength and will to go on. Yesterday, Timmy’s spirit was invigorated. I know that this special day has already done so much in lifting Timmy’s spirits. My little soldier is ready for his next battle on Monday.

Timmy will be starting his new chemotherapy on Monday. We must be at Children’s Hospital at 10AM. We will now be back in the Day Hospital for what I am told may be about four hours worth of treatments. New protocols are always frightening. Will Timmy be able to handle it? How bad will the side-effects be? I cannot wait to get through the first treatment. I have not told Timmy yet. It works best to tell him the day before, because telling him to soon will make him worry.

I would like to say thank you so much to a few people who have been so good to us lately. Mrs. Kelley, Dana Deliso, Kathleen Schweizer, Miss Colmorgen and Angela Harris for the gifts, cards, love and support you have given our family. Also, Detective Brian Grant, DE Tactical Officer’s Association, Mario Marini, USCG Rescue Swimmer, Capt. John T. Appert, USMC and Major George H. Seaward both in Baghdad, Iraq for all the t-shirts, hats, badges, patches, pictures and kind, encouraging letters that you have all sent to Timmy. The love and support continues to sustain all of our family, not only us, but our extended family too.

In closing I would appreciate it so much if you continued to keep Timmy in your thoughts and prayers. Positive thoughts and prayers are especially needed for Genna who will be having her MRI on Monday. Her mom Kristin is my friend and I so know the jitters and anxiety waiting for MRI’s can cause. We need good scan results; we really need them this time. Prayers are needed for Gabbie, Kyle and Justis’s family too.

This has gotten very long. I will update once again on Sunday night. Have a great weekend and hope you enjoy the pictures!

With Love & Continued Hope, Susan

Click here to view the slideshow of Timmy's day at Fort Dix

Wednesday, January 25, 2006 8:33 AM CST

Dear Everyone,

So how do you follow up a sad journal update? With something great of course. Timmy is going to Fort Dix tomorrow. Over the last two days I have spoken with Colonel Harvey at Fort Dix and Sgt. Mike Ambrosio of the NJSP Motorcycle Unit and put back together Timmy's Army adventure. The NJSP will be picking us up (Timmy, myself and Uncle Tom) tomorrow at 11AM. It looks like it will be a very cold day, but no rain or snow in sight. Timmy is very excited, just what he needed to lift his spirits. I just hope nothing happens between today and tomorrow and Timmy stays well. Of course I will take many pictures and let everyone know how it went.

Yesterday Timmy had a good day. His physical therapist Marie came and gave him a gentle but good workout. His lower back has been bothering him so Marie showed us some stretching excercises. Marie said he did very good. While Timmy was exercising his friend Trooper Bob Shaughnessy came by. Trooper Shaughnessy had fun with Timmy by having him shoot suction-cup darts at my TV set. Timmy thought that was just great. It's not something mom would ever let him do! Timmy also got a cool new TEAMS hat to add to his collection. It was great to see you Bob, thanks for coming by, it made Timmy happy. To wrap up the day, Timmy's friend J.J. came by with his mom and sister and hung out for a while. The kids watched TV together and had a few laughs.

I am waiting to hear from one of the nurse practitioner's at Children's Hospital about when we will be starting the new chemo. They wanted us in on Thursday but Fort Dix is our priority this time. I believe Timmy's new chemo will be another clinical trial (intravenous) every week. The doctor said he would do an MRI after 4-6 weeks. We will go along with this as long as Timmy tolerates it. If it makes him very sick, we will stop. We will truly be taking one day at a time now.

Thank you everyone for your continuing support and wonderful messages. We appreciate them so much. Thank you to my friend Tina Hoffman for the delicious meal that was waiting for us when we came home Monday night. We enjoyed it so much last night.

Once again, onward, going forward looking for that miracle and holding on to hope. Please continue to keep Timmy in your thoughts and prayers and I will update soon.

With Love & Thanks, Susan

Tuesday, January 24, 2006 8:48 AM CST

SPINAL MRI--CLEAR, NO SIGNS OF TUMOR!

Dear Everyone,

A very long day yesterday at Children's Hospital. We left the house at 8AM and returned home at 11PM. The news continues to be bad...so bad. The reason Timmy's doctor wanted us to see the MRI was because tumor involvement in the brain was so much more. Timmy has had tumor growth of about 25 percent into different areas of his brain. One of the worst areas being spots in the upper brainstem. There is also evidence that the tumor/cancer cells may have spread into the cerebrospinal fluid down the spinal cord into his back. Timmy had an spinal MRI at 7PM last night. I will get the results today.

Jay and I spoke with Timmy's doctor for about an hour. He was honest, sympathetic and offered more chemo if we chose to continue treating Timmy. Jay and I will continue to treat Timmy. We just need the results of the spinal MRI first. I will let everyone know when I hear anything.

I am trying to keep it together for Timmy. I will be strong for Timmy. I will not let him down by falling apart on him. I love this child with my whole heart. I was there for him, loving him when he was born and if he is meant to die, I will be right there loving him too.

I want Timmy to be happy. I know his family's love is what is most important, but I must find ways to put a smile back on that face. At the end of the MRI last night Timmy cried and cried. He was exhausted, he was tired of being so sick. I need to make him happy again.

I appreciate everyone for continuing to be there supporting our family. I need all of your support so much. Your guestbook entries really do give me strength and I thank you all so much for that.

I will do another update later in the day when I hear from the doctor about the spinal MRI.

With Love & Continued Hope, Susan

Sunday, January 22, 2006 2:53 PM CST

Dear Everyone,

I just want to let everyone know that we are all doing okay. On Friday, after I was given the bad news from the MRI scan, I had a really good cry. I felt as if every nerve in my body was screaming. I felt my emotions go from heartache to anger. Anger is something that I believe I have yet to feel along this journey. I have done everything possible to do what is best for Timmy. He has the best doctor, the best medicines, family and friends who love, support and pray for him. Still, the beast inside his head continues to grow. I am angry, kick in the walls kind of angry!

Jay and I want to continue to fight this monster with the best medicine that will be offered. Our medical team has said they have not run out of options. They will continue to treat Timmy as long as we want to. I have often been told that we will know when it is time to stop, to let go. Jay and I do not feel that way yet. Timmy is deteriorating, but he still has it in him to fight. My biggest fear though is at what cost will this be to Timmy. I don't want him to suffer, I don't want to destroy any quality of life that he may have left, because I want him here with me. It is such a heartwrenching, difficult decision.

Our appointment at Children's Hospital with Timmy's doctor is at 10AM tomorrow. Timmy's Godmother, Liz Fernandes will be coming with us to watch over Timmy, so we can spend as much time as we need with the doctor. I truly dread looking at the MRI pictures. I do not want to see the monsters growing in my boy's head. It makes me sick to my stomach. I hope so much that after this meeting with the doctor, we will know what the right thing is to do for Timmy.

Yesterday, both my brothers and their families came over to visit us. It was wonderful to see them, talk with them and cry with them. We all went out to dinner at the Middletown Pancake House. Timmy really wanted to go there and had a Mickey waffle and homefries. His appetite is much better since coming off the Lapatinib.

I found out today that Timmy has some prayer warriors in Dallas, Texas. A special prayer is being said for Timmy and our family. I would like to share it with everyone and please feel free to pass it on.

Heavenly Father, in our darkest hours You are
the only hope and comfort we can turn to for
relief from distress. Our hearts ache along
with Timmy's mom. Send your angels to comfort
her and fill her with Your peace which is beyond
all human comprehension. Bless her with renewed
hope and a firm trust in You. And grant that
she may know relief from the pain that is in her
heart.

Lord, we also pray for healing for Timmy. Bring
him relief from his discomfort and make him well
once again. Grant that his caregivers may be
filled with wisdom and compassion to design for
him the best treatment plan possible.

In Your will we trust. Amen.

Thank you so much to my friend Brenda Yeager who made contact with these prayer warriors.

I also ask that you please continue to pray for Genna (who is in the hospital for one week now with low blood counts), Gabbie (whose tumors continue to grown so close to her spine), Kyle (who is fighting so hard to regain strength from tumors in his brain and spine) and of course Justis's family for continued strength to go on without their precious little boy.

I will update soon.

With Love & Continued Hope, Susan

Friday, January 20, 2006 11:27 AM CST

No Miracles today. New tumor growth, another chemo failure. The tumors that were originally in the left and right thalamus have not grown dramatically. What is so devastating is that there is new tumor growth in an area called the "fornix". The doctor wants us in his office at 10AM on Monday to review the MRI and talk about our next step. Timmy is to discontinue using Lapatinib. The doctor said we do not have time to wait to enroll him in a clinical trial again. We must use something standard and aggressive. I am sure he will be doing alot of researching, and so will we.

I knew, I just knew but I was so hoping, praying. My heart hurts so much. Thank you to all my wonderful friends, family, online friends, especially those I don't even know for your support and continuing to follow Timmy's story.

With Love & Continued Hope, Susan

Tuesday, January 17, 2006 10:33 PM CST

WEDNESDAY UPDATE:

A very special woman named Caitlin Evans sent me a personal e-mail today telling me how she and her family in Ireland pray for Timmy every night at 7PM our time. She spoke to me about a personal experience with the "power of prayer". So I ask, everyone, tonight and tomorrow night at 7PM to please say a prayer of healing for Timmy. Thank you so much Caitlin, your letter meant so much to me.

Dear Everyone,

Yes, this is a late journal update, it's actually 11:30PM New Jersey time. I just got home a few minutes ago from a night out with the girls. My wonderful girlfriends took me out for a fun night to a great restaurant called The Melting Pot. I had a hard time going out tonight. I have so much anxiety about Timmy's MRI on Thursday. My friends took care of me tonight because they knew I needed it. We laughed together and cried together. I had a great night. Thank you Maryalice, Sue, MaryAnn, MaryPat, Brenda, Tara and Kelly. I love you guys for being there for me and caring so much.

I am worried about Timmy so much. He is so quiet and prefers to just sit or lay down most of the day. His walking is unstable. He has a hard time trying to express himself. He just can't find the words sometimes to say or finish a sentence. His memory continues to be bad. He can raise his right arm but cannot use his right hand. For a few days he had what I believe to be a dermatitis, caused by the chemo. His left cheek was swollen, very red and hot to touch. One of the things I have found that helps relax him is a warm bath every night. He just loves it and looks forward to it.

On Sunday, as a last minute idea, I invited a few of Timmy's friends over. It was later in the afternoon and I invited the moms to stay too. Everyone brought something and we ordered pizza in for the kids. The kids played Dance, Dance, Revolution, Uno, board games and just did silly things to make Timmy laugh. Timmy did laugh and had alot of fun with his favorite girls, Marianna and Sarah (as mentioned in his song)and J.J. and Osiris. I have a wonderful picture of the five of them together and will post that tomorrow.

Monday was a quiet day for us as we waited for Jason and Jay to come home from California. They arrived home safely at about 9PM. They had a great visit with Grandma and Grandpa Pauxtis and Uncle Greg. Jason got to drive Uncle Greg's BMW around, which I think was better than flying for him. I am glad that Jay got to see his mom and dad, they seem to be doing well. It is so good to have them back home now.

Timmy has physical therapy at home on Tuesdays. This is provided through our school system. Timmy's physical therapist Marie is so funny and very good with him. She works him pretty hard and pushes him. Timmy really needs this to help keep his muscles from stiffening up to much. I think he was a little tired or cranky today because he told her she was crazy. Oops, sorry Marie.

Thursday is Timmy's MRI. We need to be at the hospital at 9:30AM to have Timmy's port accessed for the contrast injection during the MRI. The MRI is scheduled for 11AM. It's another long one with an Spectroscopy. Timmy will hopefully once again do this without sedation. After the MRI, as part of the clinical trial, Timmy will have an echocardiogram. We do not have an appointment in the Oncology Clinic. If Timmy is still having this dermatitis problem, we may just pass by to have the Nurse Practitioner take a look at him. It will just make me feel better if they take a look at him.

Well everyone, I need positive thoughts and prayers for my boy so much right now. There have been changes in Timmy that lead me to believe that there will be tumor progression. I hope so much that I am wrong and that the chemo may be causing some of these changes. The MRI must be done, but sometimes remaining in the darkness, not knowing anything, you manage to have hope. Fact and reality will set in on Friday morning when our doctor calls us with the scan results. I am so worried, so very worried. I will definitely post the scan results sometime on Friday.

Thank you to our wonderful Nurse Practitioner Rosanna for calling and checking in on Timmy today. It meant alot to me!

TIMMY'S "SONG OF LOVE"
The Medicine of Music
Words, Music and Vocals by Carl Allocco
www.songsoflove.org

Singing and dancing
Being silly with dad
The cub scouts and taekwondo
Becoming a police officer
He loves hugging and kissing mom
He's got a lot of love to show

Timothy, Timothy
He loves anything to do with the army
Timothy, Timothy
Loves tanks and humvees
He's such a special guy
He brightens the world up with his smile
That's why we wrote this song
For Timothy

He's got two big brothers
Jason and Andrew
Oh they just think you're great
He's got a lot of friends
Like Anthony and J.J.
Marianna and Sarah
Spending time with you makes their day

Timothy, Timothy
He loves anything to do with the army
Timothy, Timothy
Loves tanks and humvees
He's such a special guy
He brightens the world up with his smile
That's why we wrote this song
For Timothy

With Love, Hope & Thanks,
Susan

Saturday, January 14, 2006 9:43 PM CST

Dear Everyone,

It's late Saturday night and raining heavily outside...oops I just looked outside and it's snowing. Timmy is doing better. The vomiting only lasted through Thursday night. I think maybe he had a stomach virus. Friday he was so tired from lack of sleep that he slept most of the day. Today he seems better, watching TV and playing some games. I am following the weather closely in order to reschedule Fort Dix. It looks like cold and rainy weather next week. I hope I won't have to put this off for to long.

My friend, Lisa Kennedy sent me something today that I have been reading over and over again. Having a child that has a life-threatening illness makes you either closer to God or have doubts. I know that I have had my doubts. I find my faith waivering, trying to understand how and why all this could happen to an innocent child, my child. What I do know is that Timmy's illness has brought out so much love and goodness in so many people. I think Timmy is a brave soul that has made a good difference in so many peoples lives. Thank you Lisa for sharing this with me. Thank you to my family and friends for coming together, caring and showing your love to our family.

"The Brave Little Soul"

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering?". Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone".

The little soul began to understand and listened attentively as God continued. "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity".

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle".

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you".

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time comes when you feel that you have suffered enough, just say the word, think the thought, and you will be healed".

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased".

With Love & Hope, Susan

Friday, January 13, 2006 11:17 AM CST

Dear Everyone,

Just a quick update to let everyone know that we did not go to Fort Dix today. Unfortunately, Timmy was up all night throwing up. I believe it is just from the chemo. I did put a call in to the nurse practitioner and she advised if he vomits again today, we may need to do a CAT Scan. So far today he is resting comfortably and we are both exhausted from being up all night.

I spoke to Colonel Harvey at Fort Dix this morning. It sounds like they had a special day planned for Timmy. He mentioned they would have to go repark the tank they brought up for Timmy. I know we can reschedule this day for Timmy soon. Timmy is not to disappointed because he is just not feeling well.

THURSDAY NIGHT UPDATE:

A quick update on our day. It was a long day, a lot of waiting and a lot of traffic. Timmy's doctor was so busy today. I actually followed him around while he was talking on his cell phone, just to get a few moments alone with him. He understands my concerns, but based on his neurological exam, considers Timmy to be stable enough to wait for next Thursday's MRI. So we wait and I worry and hope....

I came home to find something wonderful in the mail today. A friend Kristin told me about an organization called "Songs of Love". They write personalized songs for children with life-threatening illnesses. You should be hearing the song playing right now. You can click it on and off at the bottom of the introductory message. Timmy just loves it and so do I! It's beautiful and really lifted my spirits today. Thank you so much Kristin and "Songs of Love".

Off to Fort Dix tomorrow!

Wednesday, January 11, 2006 6:57 PM CST

THURSDAY NIGHT UPDATE:

Just a quick update on our day. Long day, a lot of waiting and a lot of traffic. Timmy's doctor was so busy today. I actually followed him around on his cell phone just to get a few alone moments with him. He understands my concerns, but based on his neurological exam, considers Timmy stable enough to wait for next Thursday's MRI. So we wait and I worry and hope......

I came home to find something wonderful in the mail today. A friend Kristin told me about an organization called "Songs of Love". They write personalized songs for children with life-threatening illnesses. You should be hearing the song playing right now. You can click it on and off at the bottom of the introductory message. Timmy and I just love it! It's beautiful and really lifted my spirits today. Thank you so much Kristin and Songs of Love!

Off to Fort Dix tomorrow!

WEDNESDAY:

Dear Everyone,

It has been a very quiet couple of days around here. The weather here in New Jersey has been more like spring. Yesterday, I managed to get Timmy out for a ride in the car with the windows open. We went to Holmdel Park and sat in the car and watched the ducks swimming in a pond. He really had no interest in getting out. Timmy seems very down and lacks interest in doing much of anything these days. It may be the steroids, chemo or just being sick for so long. My boy has lost his sparkle, his silliness, and I don't see that beautiful smile very often. I hurt for Timmy so much. I wish I could fix all of this for him. I certainly am trying.

Today I invited a few of Timmy's friends over, hoping this would cheer him up. There is this new video game called Dance, Dance, Revolution. Never, ever did I think the boys would like this game. Not only did they like it, they were great at it! Seeing all these nine year old boys dancing and being silly made Timmy laugh so hard. Timmy had a great afternoon and it was wonderful to see and hear him laugh again.

Timmy now has many new friends in the Coast Guard. Many of you may have read the message from Dan Wibert, GMC of the United States Coast Guard. Dan lost his son Matthew a few years ago to a brain tumor. When he read Timmy's story, it hit home and he wanted to do anything he could to make Timmy happy. Dan has shared Timmy's story with many of his friends in the Coast Guard. These men and women want to do so much to make Timmy happy. One even offered to land a helicopter at Timmy's school. I will have to check with our school's principal about that one. I know the school definitely has a big enough playground. Can you even imagine that! So from State Troopers, to Army to Navy Seals, to Airforce and now Coast Guard. Now everyone knows what a fighter Timmy is.

Speaking of Army, it is all confirmed. Timmy will be going to Fort Dix on Friday. What I can tell you right now is that we will be getting a New Jersey State Police Motorcycle escort there. My brother Tom, myself, Timmy and a few of the State Troopers will be there to share this fantastic day with Timmy. I will definitely need help getting Timmy around. I am thrilled to have all these big guys there to help. As far as I know right now, a very special day is planned for Timmy. I know he will be getting his first tank ride! I will take lots of pictures to share with everyone. The Colonel at Fort Dix also told me that they will be recording everything on video and taking lots of photographs also. The video will be for us, as a remembrance of this special day, and the photographs will be for one of their magazines. This trip could not have come at a better time.

We are off to Children's Hospital tomorrow. Timmy has a 1PM appointment to see his doctor and for bloodtests. I have so many questions and so many worries. I so need everything to go well tomorrow. Just seven more days till Timmy's MRI. Every MRI is so stressful, the waiting, the not knowing. This one though, I think has been the worst. So much is riding on the outcome of this one.

Jason and Jay are going to California on Friday to visit Jay's mom. Jay's mom had a stroke a while back and I am glad they will be able to spend some time together. Sending lots of love to Grandma Pauxtis, enjoy the weekend with your boys.

Please keep Timmy, Justis's family, Genna, Gabbie and Kyle in your thoughts and prayers and I will update sometime this weekend.

With Love & Hope, Susan

Sunday, January 8, 2006 6:34 PM CST

"In Memory of Justis"

Dear Family & Friends,

Fiday was an exciting day for Timmy at physical therapy. Timmy did get a visit from four of his Motorcycle State Trooper Friends. It was really kind of funny. These guys have quite a impressive presence about them. They are big guys, wear leather jackets and knee-high black boots. As they walked through the Rehab every head turned to look at them, wondering what was going on. When people asked, they told them they were there to see their buddy Timmy. That put a big smile on Timmy's face. The Troopers stayed for the whole hour that Timmy worked out talking to him and encouraging him. If all goes well, we will hopefully be seeing them again next Friday. There are big plans in the works. Timmy is going to Fort Dix to be an army guy for a day. We are being escorted by the New Jersey State Troopers. This is a dream come true and I will fill in the details as I get them.

We had a very quiet weekend around here. It was time to take down the Christmas tree and try to clean up. The darn tree was so dead. It did not take any water this year. When Jay dragged it out the front door, half of the tree stayed indoors. What a mess! We started separating the toys Timmy wanted to keep and the toys we will be donating to the Ronald McDonald House in Philadelphia. I am so happy that we have about 3 shopping bags full of toys to bring to them.

Timmy's energy level is very low. He continues to lay around most of the day. He is still having difficulty walking and talking most times. He is not very alert when someone is speaking to him, and his memory is just not good. His appetite is much better and I hope now that he is eating again, maybe his energy level will return. I continue to worry about him so much. I have so much anxiety about his upcoming MRI. From everything I see going on right now with Timmy, I am not expecting the best results. I will try to keep the faith though and fervently hope that I am wrong.

Well, Timmy's story has made our local newspaper, "The Village Lincroft News". We were interviewed a few weeks ago for the article. I have been nervously waiting for it to come out. I like the article (some things not exactly what I said) but I love the pictures. I have included a link to it below so everyone can read it.

We return to Children's Hospital on Thursday for bloodcounts and a follow up visit with Timmy's doctor.

Sonya, I am so sad and so sorry for the loss of your precious Justis. I will never forget your little hero. Kristin, these are such tough days that are ahead of us. I so understand your worries, lets hang in there together. Ori and Joan, your childen are always in my thoughts and prayers.

Thank you to all our new friends that have left messages for Timmy. I am deeply touched by how good and kind everyone is to us.

As always, please keep Timmy in your thoughts and prayers and I will update soon.

With Love & Hope, Susan

Click here to view Timmy's newspaper article.

Thursday, January 5, 2006 7:50 PM CST

Dear Everyone,

Friday Update:

As most of you know already, seven year old Justis Wayne Yanez passed away this morning. My heart is so heavy for my friend Sonya and her family. So many of us followed Justis's story. He was a brave, beautiful boy and we will never forget him. Please say a prayer for Justis and his family tonight during this most difficult time.

I wanted to let everyone know that Timmy had a better day today after a rough day yesterday. Much to my surprise, our nurse practitioner called yesterday to check up on Timmy. She understands all my concerns, but agrees with Timmy's doctor, encouraging us to stay the course with Lapatinib. That one phone call lifted my spirits. Now if she could only call every day until January 19ths MRI.

I decided to get Timmy up and out today. He tends to lay down to much lately. It was such a beautiful day here in New Jersey, near 50 degrees and so much sunshine. Andrew and I took Timmy out to lunch today to Friendly's. We all had such a good time together and Timmy ate well. My two boys were sitting across the table from each other. I can't believe I have a 21 year old son and a 9 year old son. The 12 year age difference between them was so obvious to me today. Andrew is all grown up and Timmy is still just a little boy. Alot of my friends know that I call Timmy my "gift". I had him when I was 38 years old. It was starting all over again and he has brought so much love and joy into my life. All our children are truly gifts, so love them, enjoy them and treasure them because they grow up so quickly.

I would like to send out a special thank you to Police Officer, Mike Simsack of the White Lake Township Police Department in Michigan. I really appreciate your caring letter. Timmy loved everything that you sent to him and he now has his first police hat from Michigan.

Thank you to all my wonderful friends for checking in on me these last few days. I really am okay. I go down but I get right back up. Lately in my world of brain tumors there has been so much sad news with other families. Today so many of us wait, because our beautiful Justis, will soon earn his "angel wings". Thank you to everyone who visited Justis's website and left words of support and prayers for their family.

Tomorrow, Timmy has physical therapy at Bayshore Rehabilitation. If all goes well, Timmy will be getting a surprise visit from some of his New Jersey State Trooper friends. It will really be funny seeing all these Troopers walk in. I am sure everyone will be wondering what is going on!

I will update soon.

With love, thanks and hope, Susan

Tuesday, January 3, 2006 10:51 AM CST

TUESDAY NIGHT UPDATE: 8:30PM

We are home. When we got to Children's Hospital the nurse practitioner took us right in. I think she was as worried as I was by my phone call. She did a complete neurological exam on Timmy and found him to be stable. She then brought Timmy's doctor in to examine him. The doctor did see some changes but none that sent up the red flag indicating an immediate MRI was needed. The weakness, the tiredness, the decreased appetite (Timmy lost 2 pounds in one week) could all be from the chemo. He said it is difficult to say what is chemo related or tumor related. Timmy even had a gag reflex today so the doctor was not to concerned about his swallowing. He wants Timmy to stay the course on Lapatinib and still have the MRI on January 19th.

I am still concerned about the changes that I see in Timmy. The doctor knows that I am with Timmy 24 hours a day and I see more than he does. I am frustrated because I know an MRI is the only definitive answer to my concerns. Once again I must wait, have faith, and try to believe what the doctor is telling me. I must give the Lapatinib some more time to work. So 16 more very long days until Timmy's MRI.

Timmy is resting comfortably tonight and mom and dad are really tired. Thank you so much for checking in on Timmy.

I have a request tonight. Many of you know that I have many times asked for prayers for a little boy named Justis. Justis's mom Sonya has been a good friend and has given me incredible support. Justis is now in hospice and not doing well at all. Please say a prayer or visit Justis's website and leave a message of support for this wonderful family. Justis's website is: www.caringbridge.org/tx/justiswayne

Thank you so much and I will update soon.

With love & hope, Susan

Timmy had a rough weekend. He layed around most of the weekend and was just so much weaker mentally and physically. Over the past two days I have noticed that he has been having troubling swallowing. His appetite has decreased and he is having a more difficult time getting his words out. His gastrointestinal problems are also back. I put a call into Timmy's doctor this morning and they asked that we bring him in right away.

Jay went to work in NYC this morning and is on his way home. We should hopefully be heading into Philadelphia at about 1PM.

The physical changes and my mother's instinct have me pretty scared and worried. Maybe they will do an MRI. Please keep Timmy in your thoughts and prayers and I will update as soon as possible.

Love, Susan

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