Friday, December 21, 2012

Scientist Seeks to Understand Neuroblastoma Gene Mutation

Over the last few years, we have participated in annual walks with CureSearch for Children's Cancer in honor of Shane. We are extremely grateful to know that money raised through CureSearch is going directly to Neuroblastoma research. We actually received this article below on Shane's Birthday (Dec. 18th) and also thought it was quite coincidental that the gene they are researching has Shane's initials in it (SHP2). Coincidence or not, we'd like to believe that our angel Shane in heaven is certainly doing his part to help out the progress of Neuroblastoma research so that no other kids will have to suffer from this cancer. We love you always Shane, we miss you greatly, think about you every day and continue to feel your presence in our lives!

- Uncle Steve ;-)



Findings Could Lead to Targeted Treatments for Children with this Rare Cancer

Shizhen (Jane) Zhu, MD, PhD at Dana Farber Cancer Institute in Boston, MA was recently awarded a CureSearch for Children's Cancer Young Investigator's Grant to study the influence of the mutation and overexpression of a gene called SHP2 on the growth of neuroblastoma tumors.

Neuroblastoma is a cancer of the sympathetic nervous system occurring primarily in young children and accounting for approximately 10% of all deaths in children with cancer. Progress in treating this cancer has been challenging because researchers do not fully understand the mutations, or abnormalities, that occur in the genes that make neuroblastoma. In a recent conversation with Dr. Zhu, CureSearch asked her about the research she plans to conduct and how it might make a difference in treating children with neuroblastoma.

CureSearch
Tell us about what you plan to study with this Grant.

Dr. Zhu
Researchers know that a gene called SHP2 is mutationally activated and overexpressed in cells when a patient has neuroblastoma. Mutational activation means the mutations identified in the SHP2 gene cause it to be hyperactive, leading to its downstream pathway. Overexpression means there is more of the gene in each cell than there is supposed to be. My hypothesis is that both mutations and overexpression of SHP2 create a pathway that leads to tumor development, creating neuroblastoma.

CureSearch
You used the team "pathway." What does that mean?

Dr. Zhu
A pathway is an exact step-by-step process that leads to something else. Think about baking a cake. There are a certain number of precisely measured ingredients that get put together in order to make the cake. If you add more of one ingredient, the cake would not come out right.

In the case of neuroblastoma, I suspect that if there is too much SHP2 and it is activated, then the normal pathway of the cells change, and lead to cancer, thus making SHP2 an oncogene, or one that causes cancer.

CureSearch
You are using Zebrafish to conduct your research. A lot of people will wonder why you are using a fish to study children's cancer.

Dr. Zhu
It's important to understand first that the fish do not develop neuroblastoma on their own. We are using a transgenic strategy, which means we are injecting the fish with the mutated or wild-type human SHP2 gene. The human SHP2 gene becomes integrated into the genome of the fish. This is called a "transgenic fish." Then we can study how cancer develops in the transgenic fish with overexpression of the mutated or wild-type SHP2 gene.

This model has been used for some time now because we have proven that pathology of neuroblastoma in Zebrafish is very similar to that of humans, and when the transgenic fish reproduce, the newly born fish carry the mutated or wild-type human SHP2 gene in all the cells. These two factors allow us to conduct studies on lots of fish very inexpensively. And, we can conduct studies that would not be possible on humans.

CureSearch
Why use Zebrafish specifically?

Dr. Zhu
We can see the tumors begin to develop in the fish very easily because Zebrafish are transparent. We begin to see neuroblastoma tumors at about 5 weeks in the fish overexpressing both mutated human SHP2 gene and another human gene called MYCN, which is a known neuroblastoma oncogene. That means we can dissect the fish and review their cells before 5 weeks to begin to look for changes in the cells. We hope this will help us understand how these two oncogenes collaborate to cause the tumor formation.

CureSearch
How will this research help children with neuroblastoma?

Dr. Zhu
If we understand how the mutations and overexpression of SHP2 affects the development of neuroblastoma in our zebrafish model and what pathway mediates hyperactive SHP2 signal during these processes, then researchers can try to develop medications that inhibit, or block, the activated SHP2 pathway. Basically, that means that a child could receive a targeted therapy that kills the existing cancer cells and tells the pathway to stop over react.

Dr. Zhu will begin working on this project in early 2013 and is funded for the research by CureSearch for Children's Cancer for two years. During the course of her grant, Dr. Zhu will provide updates on her research, and CureSearch looks forward to sharing those with you.

Sunday, October 16, 2011

National Angel Quilt




We are honored to have Shane as part of The National Angel Quilt that is currently touring the country to raise awareness for pediatric cancer research. Shane, you will dance in our hearts forever! We love you endlessly and always!

Please read more about the quilt below:

The National Angel Quilt (proudly presented by Make Some Noise Pediatric Cancer Research Foundation), honors the angels of pediatric cancer, who never gave up and never lost their faith, hope, courage and love. These beautiful children may have lost the cancer battle, but all are the most inspiring heroes and have earned their "angel wings." The quilt brings Pediatric Cancer Awareness to the country in such a beautiful and meaningful way.

The quilt features images, names and ages of children who were stolen by cancer and left us much too soon. Each child's panel on the quilt has been lovingly personalized by their parents, siblings and often by grandparents, aunts, uncles, cousins, classmates, teammates and friends.

The Quilt will Grow
The National Angel Quilt will grow while on tour as more families add their angels to the quilt. It debuted with 100 angels at the launch of the tour.

We have lost 20-30,000 children to cancer in the past 10 years alone.

The quilt has been designed to grow as it tours the country. It will be larger as it reaches each new destination. There are many more angels out there, many more families grieving. We can only hope that one day there will be cures and there will be no more angels to add.


But in the meantime, we need to Make Some Noise for these kids! Less than 3% of cancer research funding is directed to pediatric cancer, and there are more than a dozen childhood cancers which each need research funding. We need to raise awareness and we need to increase funding for pediatric cancer research!


Please visit http://makenoise4kids.org to see how you can help.


Thursday, August 18, 2011

Make Some Noise Cure Kids Cancer Foundation Needs Your Vote!

Please take a minute and vote for "Make Some Noise" Cure Kids Cancer Foundation, Inc. for Best New National Non-Profit in the 3rd Annual Stay Classy Awards! Just click this link below and then click on the "Best New Charity" category to find the vote button for Make Some Noise.

http://classyawards.stayclassy.org/classy-awards/voting


We are volunteering with them to help fund pediatric cancer research and awareness. They have established the National Angel Quilt which Shane will be a part of this year that honors all the children who have lost their battles to cancer. Please help us Make Some Noise for Kids Cancer! Thanks ;-)


Tuesday, May 31, 2011

Planting Hope...

It was just about one year ago (June 12th 2010) that we had our "Dance for Shane" fundraiser at the Elks club in Boonton. Certainly the expression is true, "What a difference a year makes." I don't think any of us ever thought that one year later, we would be planting a tree in Shane's honor... in his memory... at the very same place that we filled with people, filled with love, support and hope.

But my purpose in writing this is not to focus on what happened, what went wrong or what "could have" been... It's been almost 6 months now since Shane has passed and many people continue to ask how everyone is doing? I wish I could answer that easily, but probably never will be able to. I will say that life does move on... maybe in small moments and in the little ways that we allow it to move on. There are still days where accepting our reality and facing the emotions are more difficult than ever before and there are also plenty of other days where we can all sit around and laugh uncontrollably about a favorite Shane moment or memory... knowing that he's right there laughing with us.

There's no magic list of rules to follow or any expert advice that really helps us all heal as individuals... we are each working on it in our own way and know that it will be with us for the rest of our lives. But we continue, each and every time we get together, to find so much strength in our family, our close friends and all the people who have supported us (and continue to do so) over the past year. Without each other, we wouldn't have the strength to keep going. We continue to do our saturday-night dinners at "Pop and Gee's" house, we have a family wedding (Uncle Brian and Aunt Tara) approaching fast that we are all very excited about and we planned a family vacation to all get away together in August. These are just a few of the things among many, many smaller everyday things that are allowing us in bits and pieces to let life move on...

Of course in no way will we ever forget about Shane and all that we've been through. We've been starting to give back as much as we can in efforts to raise both funds and awareness for children's cancer research and specifically Neuroblastoma. We recently raised over $1,800 in a walk for CureSearch which goes directly to support funding for children's oncology groups in local area hospitals. And this is hopefully just the beginning. As time continues to heal our hearts and we grow stronger together, I'm sure that it will be our life-long goal to do anything we can to help other families and children that may experience situations similar to our own.

Does everything happen for a reason? I'm sure that it does... I'm also sure that we may never know or understand those reasons... and maybe we're not meant to. But we have to keep going and keep believing. There is always so much to be thankful for and so much to look forward to. We're finding our way. Slowly, but surely... and with Shane's help.

We would like to thank The Boonton Elks Club for planting a tree in memory of Shane on their property at 125 Cornelia St., Boonton, NJ. We hope that it's branches will grow, flourish and be full of life... be flexible enough to bend with each storm, but always find their way to the sun. It's a reminder to all of us... that life does continue to move on, to grow and branch out in new ways... and even though the seasons will come, the tree will lose it's leaves and be frozen by the bleak of winter... there will always be a spring and a rebirth of hope and new life.

And when I raise my own branches to the sun, I like to close my eyes and think of Shane... shining down his own light on me... on all of us... through his endless smile, his laughter and the peace that he now has... and that's the only way I can continue to grow... Maybe planting hope begins with letting go.

- Uncle Steve

Saturday, March 12, 2011

2011 North Jersey CureSearch Walk



We participated in the North Jersey CureSearch Walk on May 22, 2011 at Verona Park, (Verona, NJ). CureSearch funds the lifesaving research of the Children’s Oncology Group. This group of medical professionals treats more than 90% of children with cancer at over 200 hospitals in the United States. The money raised will fund and support collaborative research to find a cure for all cancers affecting children.

Thanks to everyone's support, our Dance for Shane team raised over $1,700 and the event raised over $80,000 altogether with over 700 people in attendance! We are so grateful to everyone for either joining us on the walk and/or for your thoughts and donations.

We would especially like to thank Metro Printing USA (Boonton, NJ) for generously donating the printing of our T-shirts for the event. They came out great and we were proud to walk and wear them as a unified team in memory of our little Shane.

Thank you so much! http://www.curesearchwalk.org/northjersey/danceforshane

Wednesday, March 2, 2011

Love doesn't end...

"Lost love is still love. It takes a different form, that's all. You can't see their smile or bring them food or tousle their hair or move them around a dance floor. But when those senses weaken, another heightens. Memory. Memory becomes your partner. You nurture it. You hold it. You dance with it. Life has to end. Love doesn't."

— Mitch Albom (The Five People You Meet in Heaven)

Monday, February 21, 2011

Badge of Honor

It was an idea I had in my head... one of the ones that doesn't really go away until you follow through with it... so I knew it was something that I just had to do before I changed my mind. I talked it over with (my wife) "Tee" and the rest of the family... everyone agreed it would be an honorable way to mark Shane's permanence in my life... and in all of ours. Rob (Shane's Dad) decided he would join me as well... (and a few more members of the family are thinking they will also do the same...)

It's been about a month now since Shane has passed... there's really no way to describe how we are all doing... what we are feeling... and how each of us manage to get through the day. It's different for all of us... everyone mourns differently. Time is supposed to heal all wounds... and I'm sure we'll all eventually "get there", but in all honesty... this is really, really hard. There's still many aspects of this that I have a difficult time "talking about" with anyone other than family... It's really hard to try to get back to a "normal" life and pretend that everything is normal when you know and feel in your heart that things couldn't be further from normal. And I know that the words I had written and spoke at Shane's funeral were filled with hope, strength, faith and comfort... and I still believe every single one of those words... but... this is still hard... there is a huge feeling of emptiness… a hole that feels as big as the universe… and the only thing that can help fill that space… is to keep believing that Shane really is still with us… that's the only thing that keeps me going...

I'm not calling Shane's name on my wrist a "tattoo"... because it means SO MUCH MORE than that to me... I'm calling it a "badge of honor". I am so proud of everything that we did for Shane, the way our family, friends, community and strangers came together... It is my honor to be his uncle and to be a part of this family. I am forever intertwined with Shane... with his story... with his life and he in mine. This experience and his presence in my life has changed me to the core of my soul forever and I can only hope and pray that Shane will never forget me and letting his light, his love, his joy and laughter continue to shine down on me and all of us.

Thank you Shane for being a part of my life… of all of our lives… you have touched so many people and you will never be forgotten.

Tattoo's done at Electric Lotus, Boonton, NJ

-Uncle Steve

Wednesday, February 16, 2011

To Write Their Names In The Sand


A friend of ours sent us this beautiful picture of Shane's name written in the sand on the beach during a sunset. There is a great website called "To Write Their Names In The Sand" that offers this service to those who are grieving the loss of a child. Please click here to visit the website and to learn more about what they do.

Below is an excerpt from the site that explains how and why they started offering this service:

"Firstly, we would like to let you know a bit about our story and what it is we do here at To Write Their Names In The Sand.

On Australia Day (January 26th) 2007 our son Christian was stillborn. Our world fell apart. We could not believe that our perfect baby boy was not going to be able to come home from the hospital with us. Over the following 18 months we struggled to make sense of why this could have possibly happened to us. We still don't understand why. On August 19th 2008, I dreamed of our son for the first time. He was playing on the beach with his friends that had also passed away. I walked up the beach to where he was but before I got to him, he ran away. I got to the point that they had been playing and it was then that I saw he had written his name in the sand.

This dream inspired me to visit the beach and write his name in the sand myself. I took my camera down to the shore at sunset and wrote his name. Since that day in the winter of 2008 I have written over 9700 children's names in the sand. It is a simple act that recognizes a life. It gives something beautiful to a family that may only have a few memories of their child - or even none at all. I visit the beach around 6 nights a week. I write all of the names, take all of the photos and create all of the memorials as a free service to anyone who has been touched by the loss of a child..."

Thursday, January 27, 2011

Fr. Richard's Homily for Shane

(As also requested by friends and family, below is Fr. Richard's beautiful and comforting homily given at Shane's funeral mass. We would like to thank Fr. Richard from the bottom of our hearts for everything he has done for us, for his grace, his prayers and his strength.)

Homily for the Funeral Mass of Shane Robert Haltmeier
Our Lady of Mount Carmel
Boonton, New Jersey
January 24, 2011
The Feast of the conversion of St. Paul

Many of you may know, and if you have seen one of Shane’s YouTube debuts you will have seen that one of his favorite books is The Monster at the End of This Book.

In the book, Grover is horrified to learn that there is a monster at the end of the book and begs the reader not to finish it, so as to avoid the monster. He uses several methods to try and keep the reader from progressing, including tying the pages shut and cementing them together with bricks. After each page is turned, the results of the failed effort is shown, and Grover tries a new method to keep the reader from turning yet another page. To the amusement and relief of Grover, the monster at the end of the book turns out to be none other than himself, and he is so embarrassed.

Kids tend to be scared of monsters and parents tend to protect them from monsters. As children grow older, the fear of certain monsters tend to diminish as we overcome our fear of the dark, that which is under our beds and shadows hovering across the ceiling. As adults however, our monsters can take on a different form. They are transformed into fears: the fear of failure, the fear of heartache, the fear of rejection, the fear of loneliness. Sometimes, we even fear good things like love, success and happiness. We adults become rather strange and much separated from those days of our childhood when our fears could be soothed by the reassuring word and presence of a parent, sibling, family member or friend

Perhaps one of our greatest fears as adults is the fear of death and when a child dies it throws everything out of order. We hear comments like, “it’s not supposed to be that way”, “how could that happen?” “Why would God do this?” And so on. At some level we are looking for answers because one of our greatest fears has been realized: a child has died and we can feel so helpless. We are afraid to turn the next page, we sometimes cannot and do not want to. The monster is great, the fear real.

Not for Shane. He never had that fear. His age and innocence would not have allowed him to consider this great fear we call death. He was simply too young and innocent to comprehend this. So he did not leave in fear of death. Yes, he had pain, suffering and discomfort but he also had the greatest parents, sisters and family in the world to soothe his discomfort, to hold him close and to whisper the words of love into his ear.

It may seem strange to say but it is easy to be a tad jealous of Shane. He is so loved. He lived his short life with more passion than some people who get to live 100 years on this earth. He had the body of a child but the soul of one who was much wiser than his young years. In Ireland we often say that a child like Shane has an old soul in the sense that the child is able to teach us more about what life, death and faith are all about – it’s up to us to pay attention. His joy, innocence and zest for life did not fade. He danced, sang, and was mischievous in a fashion like Houdini in freeing himself from (the hospital) bed. His illness did not define him. It is said in the tradition of spirituality that the eyes are the windows to the soul. How big and beautiful and full of life Shane’s eyes are in every picture and video we have seen in these days. How enormous his soul must be in the presence of God!

I know Jesus knew this, which is why he tells us so clearly that unless we become like little children we will not enter the kingdom of Heaven. Shane has entered that life of Heaven as a saint, a holy innocent – a child of Jesus. In chatting with Nancy, Shane’s grandmother last Wednesday just after he slipped away, I told her that I envisioned Shane sitting on Jesus’ lap and telling him all about his Mom, Dad, Paige, Brooke and all the people he knows who have loved him so much. I could envision his excitement and enthusiasm. He probably sang one of the Yo Gabba Gabba songs with his hands shooting up and down in such deliberate fashion. I could envision Jesus smiling, nodding his head and even joining in the song drawn in by Shane’s energy and joy.

This monster is so hard to face but we do not have to face it alone. Death has been destroyed by Jesus Christ and all who are baptized into his Life, Death and Resurrection share in that victory over death. On April 6, 2008 right here in this sacred place I had the privilege of celebrating Shane’s baptism. Even though he did not know it, we knew that Christ made Shane a promise that day. The promise was that Shane would always belong to God and that not even the darkness of death could separate him from that love.  At the end of The Monster at the End of This Book, after every page has been turned, despite Grover’s warning we find Grover at the end of the book. He is the monster at the end of the book and he is so embarrassed that he has been found out. We know that Grover is pretending to be scarier than he actually is. Death tries that too – to be scary – it works on us adults but not on children.  In the presence of God at the end of life for those who belong to Jesus as Shane does Death can only stand like Grover and say – I am so embarrassed. 

Death tries to be what it is not – death is not powerful enough to break the bond of love between God and His children. As a parent seeks to protect a child from the fear of monsters so too God seeks to protect us from the fear of death. God did not allow Shane to die – that would be just cruel. It is not the God I know. The God I know loves us so much that He gave His only Son to cancel out the sting of death forever. That is the God I choose, the God I cling to every day of my life because the monsters can be mean and the journey hard. We often encounter great monsters – despite that may we be brave enough to turn every page however difficult for we have one who can scatter the monsters and bring us safely to the end of the book. That one is Jesus Christ – then at the end of the book of our lives we will not have to fear death for death will stand before the power of Jesus Christ and profess – I am so embarrassed. 

We can only imagine how hard it is for you Jen, Rob, Paige, Brooke and all of your family members. I know that you obviously would want Shane here to love and watch forever. You did everything you could to keep him here. No one could have loved him more. These days are dark and the days ahead will be difficult. Perhaps the image of Shane laughing, dancing and running free through Heaven – playing as children are supposed to play free from suffering and pain will bring some measure of comfort. Pray to your son – he is in the presence of God and he certainly will never forget you.
For Shane the Monster at the End of this Book never materialized. What did happen is that Jesus who loves children and who bids them come to Him, stood before Shane and when his little body had given its all, Jesus reached out his hand, wrapped Shane in his arms and took him to play eternally with all God’s children where there are no monsters, no fears – where Shane will dance, and giggle and shine as the precious, innocent and loving child he is. For as we live on earth – so too will we live in Heaven.

In one of those great You Tube moments Shane’s Uncle Steve decided to have his hair shaved. Shane filled with glee sat next to him and would say: “Just like me, just like me” He was overjoyed that his Uncle Steve would want to be just like Shane. We should all strive for that. We should all have the joy, love, zest and enthusiasm that would make us just like Shane.

God of our innocence– scatter the monsters for us we pray – restore us to the innocence of our childhood. Teach us to be just like Shane, so that our faith in you may not grow weaker but stronger as we look to you to hold and embrace us in your love. Amen. 


Wednesday, January 26, 2011

Farewell Words

(The following is the Eulogy given by Uncle Steve at Shane's funeral mass. As requested by friends and family, we have posted it to website.)

For those of you who don’t know me, my name is Steve. Shane knew me as Uncle Steve and many of you might actually know me as danceforshane.com. It is my absolute privilege and honor to speak to you today on behalf of one of the greatest families I could ever be a part of. And on behalf of the bravest, strongest, most inspiring, full-of-life, best-little-buddy-a-guy-could-ever-have. 

Before I begin, my goal today is that everyone will leave here with a smile on their face and a feeling of peace in their hearts…

I don’t think it’s any secret that I love Shane as if he were my own—many of us feel that same way. Shane has touched so many, many lives and all of us are better for having known him and experienced his love, laughter, joy and innocence in our hearts.

Shane, it is the greatest honor and truly the most important role I have ever had in my life to be your uncle.  I can only hope I was as good to you as you were to me and to all of us.

If you were to ask Shane about me, the first thing he would probably tell you is that I smell like pickles. He might also tell you that I’m a pretty lousy dancer… of course coming from a pro such as Shane, I don’t take any offense to that. So, many of you might be wondering where Shane got his incredible dance moves from. I’d like to think it all started when Jen was pregnant with him at Christina and my wedding. Jen, we still apologize for making you put on a dress, but you didn’t seem to have much trouble hitting the dance floor… no doubt with little Shane grooving away in your womb.

Over the next few months and years, the dance floor found it’s new home at Pop and Gee’s house. You might call it a little Saturday night fever. It was just something we did. Knowing this family, it’s impossible to deny the incredible bond of togetherness among everyone. Something that became almost a sacred necessity. Everyone just had to see each other and be together… every Saturday night at Pop and Gee’s. These get-togethers are always filled with the endless laughter, with Brookie literally bouncing off the walls, bouncing on the trampoline with Paige, walks with Pop around the pond to feed the fish and filling the backyard sky with blowing bubbles…

and most importantly… a dance-off session in the living room led by our dearest Shaney-Shane. Shane LOVED to dance. He LOVED to dance with his sisters… with Aunt Tee… with NeeNee (who taught him the super cool robot arm move)… with Gee… with anyone who would want to join... well not always Uncle Brian and Jamie for some odd reason… but he eventually let them in.

Shane was very particular about his choice of music and had no problem screaming at the top of his lungs to let us know when we had picked the wrong song. From Barry Manilow to The Black Eyed Peas… this kid could move… and we surely thought he was Bulletproof. Yes, I said Barry Manilow… that was the only CD Gee had in her house at the time, so the poor kid started his dancing career to such favorites as “Jump Shout Boogie”… but never to “The Copacabana”… or “NO Topatabana” as Shane would say…

After his first surgery to remove the tumor from his spine, the doctors were amazed that Shane had even been able to walk this entire time. “Walk?” we said… you haven’t even seen what this kid can do… I think we knew there was a small miracle there… and we would take whatever we could get… and so at that point, Shane’s YouTube career was born… we needed to show the world how amazing this kid is… beating all the odds and given what he had gone through and what was yet to come, Shane continued to rock that dance floor every Saturday night... even just a few weeks after spinal surgery…  and we were all with him every step of the way.

I would personally like to thank the creators of the Yo Gabba Gabba show… probably the most bizarre kids TV show in the world… something that leaves us adults scratching our heads wondering who comes up with this stuff?… but it brought Shane so much joy and so much happiness… so much laughter and truly helped carry him through this fight. In fact, I’ve never before met a 2-year old who knew how to access a wireless network from his iPod in order to search YouYube for his favorite Yo Gabba Gabba episodes… and when he couldn’t get it to work, he would sit there in his hospital bed and say, “Mommy, no WiFi?”. The nurses were all amazed…. And Jen would simply say, “That’s my Shane.”

Speaking of Yo Gabba Gabba. Jamie (Uncle Jamie), you are amazing. You created the most incredible parade float for Shane and poured so much of yourself and your love for him into it. No detail was left un-thought of and no inch left un-measured. It was an honor to have helped you with it and I know we all wish Shane could have been there to see it, but I don’t doubt for a second how much he loves and knows and sees now everything that you did for him.

During this past year, we have witnessed many small miracles along the way. It has been a time where family has come together like never before, where friends have become pillars of strength and support and even complete strangers have become our guardian angels. There are no amount of words to express enough thanks for the blessings, prayers and love we have received from everyone during this time. Please know that ALL of you everywhere have a very special place in our hearts and we could not have done this without you.

Cathy and Gail, you have both been rocks in this family… completely selfless and willing to drop anything and everything at a moment’s notice to be by Shane’s side. Eileen… I think you should probably consider running for Mayor of Boonton. You rallied an endlessly overwhelming amount of support, love and prayers from everyone in this town. Ellen, I think I can see a pair of wings on your back. Uncle Walt, you were never more than a phone call away and gave everything of yourself. Joyce, you gave us the most beautiful pictures of Shane and our family that we will cherish forever. To Renee, Shane’s Grandma Pat and Grandpa Bob and the entire Haltmeier family, you all gave everything you had, tirelessly and never with a second thought during the endless hours by Shane’s side and many sleepless nights.  Pop, you are the anchor of this family whether you know it or not.
Gee, Shane is your little angel… but you were no doubt also his angel… and I could probably write a book one day about what that really means. Aunt Joanie, you are the definition of what it means to be someone’s best friend and were there for Gee whenever she needed you most. Brian, Tara, Jamie and NeeNee… and of course… Tee… we did everything we could for Shane by doing everything we could for the girls. Keeping life as normal as possible for them wasn’t always an easy task, but I think there’s certainly a reason we were all meant to be Aunts and Uncles. To Shane’s dearest “Whipney”… you were probably his first crush and your dedication, compassion and love for him will never be forgotten… and that also extends to the entire medical teams at both the Goryeb Children’s Hospital of Morristown and the Children’s Hospital of Philadelphia.

Jen and Rob, for me to stand up here today and tell you that you did what any parents would do for their child… is simply not enough. You gave up everything you had… and then even more. And as much as the rest of us tried to carry you through this, the strength of the both of you and your persistence no matter how difficult things became is an inspiration to us all. I can only pray that you both will find peace and comfort in your hearts knowing that you did absolutely everything you could. And in the days and weeks to come, I also want you to know that you are not alone… and you never will be alone. That’s kind of impossible in this family anyway. But my promise to you is that we will all continue to be here for you every second of every single day.

And that goes for you too, Paige and Brooke—our two little love-doves. If you ever feel like spending time with Aunt Tee and I… don’t hesitate for a second… because we probably need you, more than you need us.

There’s three things that I’m going to ask everyone to do today...

The first, is that I think we need to accept that Shane is no longer with us here… but under no circumstances do I think we should start talking about him and thinking about him in the past tense. Why? Because I truly, truly believe that he is still present with us at all times… just in a new way. And I just don’t think that it’s right to say, “Shane was…”. It should be “Shane is…”. Because if any of us are going to get through this at all, we have to believe that Heaven is a place without cancer… without pain or suffering… that it’s Shane’s new home where he will forever shine down on the rest of us and continue to live on in all of our hearts and lives in this new way. Maybe it’s not the way that we want… but it is the way that is best for him. So let’s let Shane keep living in all of our hearts… right now… in the present tense.

The second thing I’m going to ask everyone is to stop asking, “Why… Why did this have to happen?” Because if we start doing that, we are never going to find an answer… and never have any peace in our hearts. Letting go begins with letting go of asking that question.

Dr. Seuss had once written, “Sometimes the questions are complicated and the answers are simple.” In our case, yes… this is a very complicated question. I can’t promise you a simple answer… but merely just a suggestion... This was Shane’s time to go... as unfair as that seems. I’m not asking you to accept this today… or even anytime soon… but just think about it… let’s stop asking why… and trust that this was his time.

We might be deeply saddened by this… maybe even angry… we wouldn’t be human if we didn’t feel this way… and if we need to get upset at times and let that frustration out… then that’s what we need to do. But just know this… even in his very short time with us… Shane had experienced everything he needed in life… he experienced the absolute best of what life has to offer… because he experienced love. Isn’t that really what life is all about anyway? And Shane had SO MUCH LOVE…. From all of us… from all of you… and he knew how much love he had… and he gave it right back to every single one of us. Let’s not ever take that for granted. Love really is all we need… the love of family and friends… of people coming together… the love of giving up everything you have to help someone in need… the endless love and support of an entire town and community… the love of prayers from strangers from all over the country and maybe even the world… Shane had all this love in his life… and even so much more. Let’s keep that love going… not just for Shane, but for everyone we meet in our lives…. And I’m willing to bet that this will help bring some peace to our hearts.

And also know this… Shane wasn’t afraid… He wasn’t afraid of the Monster at the End of this Book… and we shouldn’t be afraid either. If we live our lives in fear of our “monsters”… we’ll never be able to turn another page… With faith and love in our lives… we’ll be able to look at that monster and say as Shane would say, “I am so embarrassed.”… Embarrassed that we were afraid of anything in the first place at all. We will face this together.


If I haven’t said it enough already… We want to thank everyone again for all the support, thoughts and prayers you have given us over the past year. We couldn’t have asked for a better family and friends to help carry us through this. We were ALL part of this fight together. Shane’s fight was our fight.

Shane, we love you endlessly and always. You are the greatest inspiration, strength and joy in our lives. Please don’t ever stop dancing or smiling down on us…

Finally, the third and last thing is going to require some group participation from the family… and Pop, if I get in trouble for this one… I’m blaming it on you… but we need to do this for Shane…
In my hand, I’m holding the “front” of a duck…
What does the “front” of a duck say? (response: "Quack!")
In my other hand is the “back” of a duck…
What does the “back of a duck say?(response: "Ppsstt!")

In order for this closing to make sense... please see Shane's video here.

Friday, January 21, 2011

Saying Good-bye: Services for Shane

Viewing:
Monday, January 24
2pm-9pm
Our Lady of Mt. Carmel Church
910 Birch Street, Boonton, NJ 07005
973 334-1017
http://www.olmcboonton.org/


Funeral Mass:
Tuesday, January 25
10:00am
Our Lady of Mt. Carmel Church
910 Birch Street, Boonton, NJ 07005

In lieu of flowers, donations may be made to:
The Shane Haltmeier Fund, C/O
70 Dawson Ave.
Boonton, NJ 07005

Thursday, January 20, 2011

Heaven’s newest little angel.

Heaven gained a new little angel yesterday. His name is Shane.

After almost a year-long fight against cancer, things progressed in the past few weeks to a point where Shane’s little body could not keep going. There was no more anyone could do except to be with him and comfort him as he left us peacefully. Words do not exist to even begin to describe moments like these.

If any of us are going to get through this at all, we have to believe that Heaven is a place without cancer… without pain or suffering… that it’s Shane’s new home where he will forever shine down on the rest of us and continue to live on in all of our hearts and lives in a new way.

The real fight for the rest of us is yet to come…

We want to thank everyone again for all the support, thoughts and prayers you have given us over the past year. We couldn’t have asked for a better family and friends to help carry us through this. We were ALL part of this fight together. Shane’s fight was our fight and together we did everything we possibly could.

Services for Shane are being planned in the next 2 days and will most likely happen early-mid next week in Boonton, NJ. More details to follow…

Please, please take a moment today to remember Shane and all his love and life that he shared with all of us over the past 3 years. Keep us in your prayers… as well as all the other families and children in this world who may be facing a similar battle.

Shane, we love you endlessly and always. You are the greatest inspiration, strength and joy in our lives. Please don’t ever stop dancing or smiling down on us…

-Uncle Steve

Friday, December 31, 2010

Happy Holidays and Thank You!


We just wanted to wish everyone again Happy Holidays and say THANK YOU for all your support and prayers this year! As this year comes to an end, we can only hope and pray that 2011 will bring Shane back to full health and recovery. We are still at the Children's Hospital of Philadelphia recovering from complications due to the bone marrow transplant and other procedures Shane started back in October. There's nothing more we want right now than to get Shane healthy enough to bring him back home. These last few months in the hospital have been very, very long and very emotional for everyone.

Shane's sisters (Paige and Brooke) had not seen him since he left for Philadelphia in October. On Christmas Eve, we (Aunt "T" and Uncle Steve) took the girls to visit Shane as he was finally out of the ICU. There were definitely some tears and plenty of smiles and lots of hugs. Shane didn't quite have the strength to stay awake for too long, nor could he really open any Christmas gifts yet... but he is still slowly recovering and maybe we'll just do Christmas all over again once he comes home.

The last picture you see above was taken from Shane's room. It's a sign for 34th Street. And although it's not the famous 34th Street in NY known this time of year for it's "miracles"... we'll still take it as a good sign and we'll also take any miracles on any 34th street we can get...

Happy New Year Everyone and from the bottom of all our hearts... THANK YOU!

-Uncle Steve

Sunday, December 19, 2010

Download Holiday Album + All Proceeds Go to Shane


Happy Holidays everyone! I'm inviting all of you to please consider downloading my Holiday Album. All proceeds will go directly to help Shane's fight. You can download individual songs or the full album. It's a "name your price" download... so consider it an open donation in the amount of whatever you feel like giving. (Each song starts at only ¢0.50).

Download album here (http://www.stephenmichaelstudios.bandcamp.com)

If you like it and believe in the cause, please share this with your friends and family. I thank you so much in advance and wish everyone the warmest and happiest of holidays this year! And please keep Shane in your thoughts and prayers.

-Uncle Steve

Saturday, December 18, 2010

The Official Sponsor of (Shane's) Birthdays

I remember when I first saw one of the commercials on TV for The American Cancer Society and it ended with the tagline: The Official Sponsor of Birthdays. It initially caught me a little off-guard... it's a bit unexpected and certainly a powerful claim to make. But now that our family has been going through this battle with Shane, I think we all can fully understand and appreciate the enormity of this tagline and how it must mean so much to so many people.

Today (December 18th), Shane had his 3rd birthday. For almost the entire past year of his life, he has been fighting hard... very hard... to beat his cancer. Birthdays are always a special thing in this family, but maybe even extra special now. Every moment is precious... every day... every year... and my wish for Shane this year is that he will have and endless supply of birthdays to come.

So I just wanted to say thank you.... to The American Cancer Society for doing everything you do to keep birthdays happening for those who need them most. And thank you to every single healthcare and medical professional that has been a part of this fight with Shane and our entire family... and moreover... to anyone who has dedicated any part of their life, their careers, their time, talent, resources and prayers to help those battling cancer... I hope you know how much you make a difference ;-)

Happy Birthday Shane!

 http://morebirthdays.com/

-Uncle Steve

Sunday, December 5, 2010

Believe...


We would like to wish everyone a Merry Christmas and the happiest of Holidays this year! It has undoubtably been a very long year and we are so extremely grateful for all of the incredible people who have touched our hearts this year in helping us to get through this fight! From friends to family to total strangers—we would not be able to get through any of this and face another day without all the help and strength you have given us with your thoughts and prayers.

We are currently still at The Children's Hospital of Philadelphia where Shane began his bone marrow transplant many weeks ago. The transplant went as expected but due to some unexpected and difficult complications, Shane has been in the ICU for the past 3+ weeks fighting a roller-coaster of obstacles. Progress is slow, but each new day brings new strength. We hope to be home soon and that Shane might have a (somewhat) normal Christmas. Please continue to keep Shane in your thoughts and prayers, but most importantly, please continue to believe...

Tuesday, November 30, 2010

Thank You to the MOM's Club of Boonton/Montville!

We want to give an incredibly big thank you to the MOM's Club of Boonton/Montville who held a vendor's night fundraiser to raise money for Shane. The event was a tremendous success and we are extremely touched and grateful for everyone's generous contributions in time, services and donations! There are truly amazing and giving people in this world and please know how much you have helped us in this time.

Please click here to learn more about the event

Additionally, we would especially like to thank all the vendors, businesses and individuals who donated their profits, services and items for the silent auction. Click here to see the full list and please support them.


Monday, November 29, 2010

Grand Marshall Shane

A big thank you to everyone who came to the Boonton Fire Department Christmas Parade this past Saturday to support Shane and to see our Yo Gabba Gabba/Dance for Shane float! We'd especially like to thank Uncle Jamie for designing and creating the most amazing float for Shane and to everyone who helped put it together. Also a special thank you to Jimmy Hodgins for lending us his garage, his trucks, his tools, his sense of humor and his big heart!

We will be posting more pictures and videos of the parade and the float-building in the coming weeks, so please stay tuned. In the meantime, you can read an article about Shane and the parade from the Daily Record here.

Thursday, October 28, 2010

MOMS Club will donate event profits to save Shane

The act of giving will take on a new importance at the MOMS Club Holiday Vendor Night on Nov. 30. Not only will attendees be able to buy gifts for loved ones, but also 100 percent of profits will go towards helping 2-year-old Shane Haltmeier, diagnosed on March 19 of this year with neuroblastoma...

Read Full Article on NorthJersey.com

Wednesday, October 20, 2010

Diaper Box Basketball

Well... the title says it all ;-). When you know you have a few weeks in the hospital, you have to do something to pass the time... what better way than to play some hoops with an empty box of Huggies?

Sunday, October 17, 2010

Shane begins his Bone Marrow Transplant

Tomorrow morning, Shane will be leaving for The Children's Hospital of Philadelphia to begin the process of his bone marrow transplant. He will be staying there for the next 4-6 weeks to complete this treatment which requires moderately strict isolation and careful medical attention. We know he will be in the great care of experts (who are specialists in pediatric cancer) and although we are going to miss him greatly over the coming weeks, we can't help but feel encouraged that this process signifies great progress in his recovery. We are hopefully nearing the end stages of what we all fully believe will be Shane's victory in this battle with Neuroblastoma. There is still a bit of a long road ahead, but now as we do look back on how far we've come over the long months of this fight, we are eternally grateful for everyone's thoughts, prayers and strength of faith that have gotten us this far and keep us fighting every day for and with Shane to beat this cancer.

Making "family time" an absolute priority has been such a crucial part of everyone's strength. It has been so important for all of us to hold each other together with laughter and smiles, tears and hugs, both doubt and faith... but ultimately with the kind of love, support and persistence that only comes from knowing that we are all in this together. Shane is the absolute light of our lives and he continues to amaze us every day with his own strength and resilience. All things considered... he may even be the strongest one of us all. I can't wait to sit down with Shane... a very long time from now and explain to him how he was the one that got the rest of us through this...
-Uncle Steve

Thursday, September 30, 2010

New Treatment found in fighting Neuroblastoma

Shane is home from the hospital after a 10 day stay. His blood counts were non existent until this week. On the news last night, there was a story about a new treatment found in fighting Neuroblastoma. Dr Maris, Shane's doctor said he will be getting the same treatment as this little girl. Please read the article here:

New Treatment for Most Common Cancer in Babies

Friday, September 24, 2010

Volunteers go to jail to help a child

Read an article about Shane and our recent Wild West City Fundraiser published in the following local newspapers: Sparta Independent, The Township Journal, and The Observer Tribune.
Volunteers go to jail to help a child

The Township Journal

The Observer Tribune

By Heather Ann Schaefer

Monday, September 20, 2010

The Fight

In March (2010), Shane was diagnosed with Neuroblastoma... a difficult type of cancer that occurs in infants and children. After spinal surgery, 6 rounds of chemotherapy and an additional surgery, Shane will soon be going for a bone marrow transplant. Many people ask, "What's the prognosis?" Our one doctor told us, "We are going to cure your son." But until then... it's going to be a fight.

A Wild West Thank You!

On Sunday, September 19th, 2010, Wild West City (Stanhope, NJ) hosted an open donation to enter from 3:30pm—6:00pm. All proceeds during this time went directly to The Shane Haltmeier Fund.
The event raised almost $5,000 with more pledged. In attendance was congressman Rodney Freylinghuysen, Mt. Olive Police Officer John Glinko and Assemblyman Anthony Bucco. John Glinko was arrested in what is known as a jail and bail. His bail money was over $1,000 that was collected and donated by John Glinko and friends. A very special THANK YOU to Joyce Bambach who donated much of her time, energy and talent to organize and pull this event together. We are very, very grateful to all who were in attendance for generous donations and for taking the time out of their lives to be a part of this event for Shane. Thank you from the bottom of our hearts!

Sunday, September 19, 2010

NEW EVENT: Vendor Night for Shane

Vendor Night for Shane:
On Tuesday, November 30th from 7-9pm, 2010, the Boonton/Montville Moms club will be hosting a "Vendor Night" where you'll be able to shop for great items such as boutique jewelry, cosmetics and homemade baked goods. All proceeds will go to The Shane Haltmeier Fund.

We are still looking for additional Vendors to be a part of this event. If you are anyone you know might be interested in being one of our vendors, please contact Jodi Beyer (information below).

Details:
When: Tuesday, November 30th, 2010 (7:00pm-9:00pm)

Where:
Montville Senior Center
356 Route 202
Montville, NJ 07045
(973) 299-5087

Contact
:
Jodi Beyer (Vice President Boonton/Montville Moms club)
email: jrbeyer@optonline.net
phone: 973-335-5427

Sunday, September 12, 2010

NEW EVENT: STARZ Performing Arts Academy Dance Class Fundraiser

Dance Class Fundraiser:

On Saturday, October 2nd, 2010, STARZ Performing Arts Academy (Fairfield, NJ) will hold a dance class fundraiser for Shane. Children may sign up no later than Wednesday, September 29th to participate in the class. Cost is $15 per child and all proceeds will go to The Shane Haltmeier Fund.


Details:

When: Saturday, October 2, 2010 (2:30pm-4:00pm)


Cost: $15


Where:

STARZ Performing Arts Academy

333 Passaic Ave.

Fairfield, NJ 07004

973-575-7025

Monday, August 16, 2010

Shane's Summer Update

It's been a busy summer to say the least... trying to keep life as normal as possible for both Shane and the girls. Every day comes with a new set of challenges and the road to recovery can be a bit of a roller coaster at times. We are so thankful for the continual efforts of family and friends who are helping us get through each day. We wouldn't be able to do this without you.
Shane has just finished his 5th round of chemotherapy at Morristown Memorial Hospital. We had a series of tests today to determine how we are going to proceed with the next surgery. The initial spinal surgery Shane had back in March was not able to remove all of the tumor from from his body. We hope the chemo treatments he has received to date have shrunken the remaining tumor and made it more accessible for the next surgery. Depending on the test results, the 6th round of chemo may happen before or after the surgery takes place... we will then start to plan the bone marrow transplant procedure for the near future which will take place at The Children's Hospital of Philadelphia.
Like all of us, Shane has his good days and not so good days throughout this process. But it's those simple moments when he cracks a little smile... looks at you with a joy in his eyes known only by the innocence of childhood and just giggles the purest giggle you've ever heard. He could be laughing at one of my silly jokes or just acting playful as any normal 2-year old would, but it's a moment I don't think I'll ever take for granted for the rest of my life. And it's these moments that give us all strength... that help us to have faith in the fact that everything is going to be ok. Take a moment... and smile for Shane today ;-)
-Uncle Steve

Thank You to The Daniel Galorenzo Foundation!

There are some truly amazing people in this world—full of generosity, compassion and a willingness to give with their hearts that goes beyond words. Earlier this summer, Shane received an incredible donation from Allen Galorenzo on behalf of the foundation he started for his own son The Daniel Galorenzo Foundation.
Daniel had passed away tragically from an aortic aneurysm in 2002 at the age of 16. The Foundation’s primary mission is to grant scholarships to financially challenged students and monetary gifts to foundations which enhance the quality of life for children with life-threatening illnesses.
Shane got to choose his very own, custom-built "Play System" (fancy term for swing set) from Rainbow Play (of Parsippany, NJ) and have it installed in the backyard for himself and the whole family. We are so grateful to Allen and his foundation for helping Shane to feel more like a normal kid this summer and for years to come.
Click here to find out more about The Daniel Galorenzo Foundation.

Sunday, June 20, 2010

Shane makes the Headlines!

The Citizen of Morris County wrote an article on Shane this past week to help tell his story and spread awareness of Neuroblastoma. The story was featured on the front page in print and can be read online here:

Community rallies for Boonton's Shane



Monday, June 14, 2010

A Big Surprise from Gabbaland!

Shane is currently home recovering from his 3rd round of Chemotherapy. He had his old set of "tubies" (chemo ports) removed due to a bacterial infection and replaced with a new smaller set. This will hopefully help to prevent further infections.

Recovering from chemo treatments is certainly not fun for anyone, but Shane received a big surprise today from one of his favorite TV shows Yo Gabba Gabba. A few days ago, Uncle Steve was able to contact the network that produces the show and he shared Shane's story with them. They immediately put together one of the greatest packages of Yo Gabba Gabba items for Shane that arrived straight from Gabbaland today. Shane was bouncing-off-the-walls excited! This really means so much to him and our family and we are so grateful for the kindness and generosity of everyone at Wildbrain.

Sunday, June 13, 2010

Thank You to All!

Our Dance for Shane fundraiser, held this past weekend, was a tremendous success due to the overwhelming love and support of all of our friends, family and even total strangers. Our sincerest gratitude and appreciation to everyone who helped put this event together! Whether you have donated time, money, food, services, or items for our auction, you have warmed our hearts with your generosity. Please continue to keep Shane in your thoughts and prayers.
Thank You!
(for a complete list of all the businesses and people that donated food, auction items and services, please click on the "thank you" tab)


Tuesday, April 20, 2010

Donate Blood for Shane

If you are interested in donating blood for Shane, Morristown Memorial will be accepting walk-in donors.

Shane needs o+ cmv - (they will type and cross blood). (Platelets as well have to to be cmv-).

Just mention your blood donation is for Shane Haltmeier. If Shane can't use it, your blood will then be used for anyone that needs it. Shane usually needs blood about 7-10 days after the 1st day of chemotherapy treatments.

For more information, please call 973-971-5621

THANK YOU!

Saturday, April 17, 2010

First round of Chemotherapy

I will be leaving tomorrow with my Mommy and Daddy to go to a hospital in Philadelphia for my first round of chemotherapy. I will be there for 5 days before I can come home again... I sure hope they have some toys to play with. Mommy is going to bring my favorite book to read. It's called Monster at the End of this Book. Grover is very silly and makes me laugh. This is one of my favorite parts from the book where Grover doesn't want me to turn the page: