Hello Supporters! 

Just wanted to share something with you that I am very passionate about, our YOUTH.  I often daydream and think about what my Griffin would do when he grew up, heck I think about what he would be like entering the Middle School this year or what sport he would be playing.  A statistic that always resonates with me is that Pediatric Cancer on average: a child loses 67 years to spend on this earth, laughing, smiling, but also leaving their mark they were destined to on this world.  

So when the students of Syracuse University Sports Venue Event Management Class of 2019 reached out to GG and wanted to host the Orange Guardians Kickoff, I immediately said YES!!  These students are our future...this event is not an easy event to pull off but they are doing it because of their drive and their passion for helping our community.  Each year that Griffin's Guardians has been in existence the need in our community has increased.   Events like these, run by our future leaders, not only allow us to help MORE families but it allows us to make a BIGGER impact on each family.  

Did you know that in 2018 Griffin's Guardians gave back to our local CNY families over $110,000 in financial support?  We made sure these families had reliable transportation to and from the hospital, we made sure they had the prescriptions they needed, we made sure their house bills were taken care of and we even stopped into the hospital to meet these families and to bring a little sunshine to them.  We know this support will increase even more 2019!

This Orange Guardians Kickoff will highlight Coach Dino Babers and how he has brought a community together through the SU football program, it will show the strength of Cancer Survivor and SU Football player, Rex Culpepper and it will show the determination of a family whose mission is to carry on the legacy of their little boy who continues to inspire a community.  

Details for the EVENT: 

The deadline is fast approaching to get your tickets by 3/16 and receive the Swag Bag valued at $75! It's a win-win!  It includes, a limited edition GG Under Armour hat, 2 SU football tickets, $5 concession stand voucher, and the football tin!   The event will take place on April 8th, at the Embassy Suites by Destiny!  Wear your game day clothes, check out the amazing Silent Auction items with unique experiences and be inspired by the community we live in! 

Please see the link below for opportunities to sponsor and to get your tickets today before the deadline!!!

https://www.griffinsguardians.org/orange-guardians-kickoff.html

Thank you all for your continued support! 
 ~Erin 
​

​​Today I woke feeling a little heavier, moving a little slower and decided I needed something.. something to uplift my heavy heart.  Grief is like a tidal wave, some days you can ride the waves, other days it feels like the waves takes you to unwanted areas and you have no control. I am missing Griffin so much these days, He should be here. 

I should have a 4th grader celebrating his last “Fun Days” at his Elementary School.  I should have a 4th Grader who could be giving his little brother high fives in passing as this will be the ONLY school they would have shared the halls with.  I should have a 4th Grader that Grace could have given a tour of his new Middle School and given him the “ins and outs”. 

I should have a little 10yr old boy looking up to his daddy for advice.  I try to imagine Adam with both his boys together… a 6 yr old and 10yr… man would their time be filled with fishing, campouts, tossing a football, projects and “hanging” at the golf course. 

I should have celebrated Mother’s Day with all of my children.  My Everett made me breakfast in bed, and was SO proud of it he literally ate half my breakfast because it was so GOOD!  And my Gracie didn’t want me to lift a finger all day, made a beautiful card and gifts…But I wondered what would Griffin have done?  What would his embrace feel like as a 10 year old boy now, what would his card say, would he have laid in bed too and ate my breakfast?  I will never know, because he should be here. 

Everett has become a little beast on the soccer field, skating faster in hockey and is gearing to start up lacrosse.  Would Griffin be in all these sports?   Would he still be shooting hoops in the driveway or riding his dirt bike?  He should be here.

Grace is kicking butt in school and in sports.  Would she and Griffin be outside practicing together?  Would he be giving her a run for her money?  Would Griffin, Everett and the two boys next door have a “Boy’s Club” and be inseparable all summer?  I will never know, because he should be here.  
And what would Griffin think of doggie Nora?  Would we even have Nora?  Would he be teaching her tricks like Ev and Grace do?  Would he be begging to have her sleep in his bed?  I will never know. 

One day my heart broke for a mom GG was helping, and I called Adam so upset. I was brave for the mom but then the tears flowed for Adam.  Adam asked me, “Did you cry with that mom?”   I said “NO, I would never”!  He said, “maybe you should”!  “Maybe it’s ok for you to let them know, yes you can be brave but at the same time you are sad for them.”   

There is something to be said about being brave, it takes a lot of strength, a lot of energy, and in a way it takes embracing a pretend shield from letting the heartache and pain set in or spread too far.  But I am realizing, 3.5 years in the emotions are just as raw as day 1, the memories of those early days are still so vivid and it’s ok.  It’s ok to still have those good and bad days, grief and our sadness will never, ever go away.   It’s ok for me to in a way to “daydream” about Griffin and what “would have been” because really what is my other choice? 

I’d like to think that Griffin would still be a class clown, surrounded by oodles of friends, adored by the adults, a coaches dream, beast at playing sports, annoying to his older sister and bossing his little brother around. I’d like to think Griffin would still be super protective of me especially when it came to a tickle torture by daddy… and I’d like to think Griffin would hang on Adam’s every word wanting to learn everything and anything just like his daddy.

So although I woke feeling a little heavier today, moving a little slower, hugged Grace and Ev a little harder as they left for school.. it’s ok.  There is no timeline for grief, and the key is recognizing that statement “there is no timeline for grief” and when the grief because unbearable you take a moment or few and regroup…. In a way draw strength from someone or something. 

After the kids went off to school today I watched our 2017 Gold Tie Gala video.  To me the video sort of takes you through a tidal wave of emotions.  Your heart swells with emotions when you see those brave children enduring cancer with a smile, in a way your heart breaks as you hear Archie’s mom and dad retell “Archie’s Story” but then by the end you feel so honored they shared their personal story and you stand a little taller knowing they are coming through this journey with an amazingly positive outcome….  And then there is the support from friends, families and complete strangers in the last part of the video and you are left in awe.   
​
Today this video, those who are in it….  is where I will draw strength from...

https://www.griffinsguardians.org/gold-tie-gala.html

​  

 3 years ago today Griffin took his final breaths.  3 years ago today my heart broke, 3 years ago Adam’s dreams for Griffin were shattered, 3 years Grace lost her partner in crime and 3 years ago Everett lost out on years of memories with his older brother.  3 years ago my beautiful “perfect” family forever changed.

Does time heal?  I am not sure how that is possible.  How can something so painful lesson with time?  A mothers’ love for her child only grows with each new day, so how can that pain of losing a child lesson with time?  I guess it is more of adapting to your new life.  It’s learning to carry the heartache, it’s learning to smile when it you don’t want to, it’s learning to start your day for your other children because they need to feel the sunshine each day.  It’s learning to love your spouse in a different way.  It’s learning to keep your anger “at bay” because it can be like a volcano ready to erupt.  It’s learning that anger will get me nowhere but at the same time recognizing the anger because losing Griffin is awful.  It's learning to not be jealous of your friends.  

​It’s learning to accept the new family dynamic.  It’s learning to always wonder “what would have been”.  It’s learning to snap that picture on the first day of school of 2 of your 3 children. It’s learning to walk into Open House at school for your new Kindergartner but know deep down that was the last grade Griffin made it through.  It’s learning to love the hugs you get from Griffin’s friends and for a moment pretend that was Griffin.  It’s learning to look at every move Everett makes to see if you can catch a glimpse of Griffin.
 
After 3 years, I guess we are still learning.  

February 14, 2017
 
Dear Vice President Biden,
 
I am hoping this letter will reach your hands and possibly will continue to reach your heart.  I am a mother of three children, two of which are here with me on earth and one who has earned his angels wings at the age of 7.  Griffin was diagnosed with Glioblastoma Multiforme, a rare form of brain cancer the day after his 6th birthday.  He underwent an intricate brain surgery, 33 radiation treatments and countless rounds of chemotherapy.  He did all of this and still would raise his hands in the air and say, “It’s a great day to be alive”!  Sadly, Griffin fell right into the textbook medical statistics, “Life expectancy of 14 months” and he passed away the month after his 7th birthday on September 12, 2014. 
 
During Griffin’s battle with cancer he taught us what true courage is, he taught us to never give up, he taught us to keep smiling and most importantly he taught us the definition of complete, unconditional love.  I will NEVER say he lost his battle to cancer but that he won… he won the hearts of so many!  His presence here on earth was a gift to all of those who knew him and in his honor we will carry on his fight against Pediatric Cancer and we promise to NEVER, EVER give up!
 
I am writing to you because I know that you have lost a child to this beast and I give you and the entire Biden family my deepest sympathy.  I know you feel the determination, the commitment, the love that can help make a difference in the world of cancer and you have only just begun with the Cancer Moonshot initiative.  Like you, Griffin’s family and friends wanted to make a difference in the world of cancer in Syracuse, NY and created a recognized, non-profit organization called Griffin’s Guardians in Griffin’s honor.  Griffin’s Guardians mission is to raise awareness for Pediatric Cancer, fund Pediatric Cancer Research and to provide financial and emotional support to families with a child battling cancer in Central New York.   They have recently partnered with St Baldrick’s Foundation and are partially funding a Pediatric Cancer Research Grant at the University of Michigan.  Griffin’s Guardians has raised over $250,000 in its’ first 20 months and are determined to make a difference and won’t give up until we have a cure. 
 
Vice President Biden it would be an honor if you would speak at our 3rd Annual Gold Tie Gala to be held at the Marriot Downtown Syracuse (formerly Hotel Syracuse), Syracuse, NY on Saturday, September 30, 2017.  Every father deserves to teach his children, every sibling deserves to make endless memories and every mother deserves to feel their children.  Please join me in making this possible for every mother and father and please help us to create ripples. 
 
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”  ~Mother Teresa
 
With Love, determination and sympathy,
 
Erin Engle & family
 

The Holidays are in full force and so is the weight I carry in my heart.  The leading up to the Holiday for me is much worse than the actual day.  I think because when the day finally comes, I know nighttime will soon follow and the day will be over.  I have always loved the holidays but even more so since I became a mom.  Looking through a childs eye the first time they see the Xmas tree decorated, the begging to hang the stockings just so they can look at them, the sounds of little feet running down the stairs to find out what our silly Elf on the Shelf did last night... I love ALL of this.  I love that the kids find the perfect gift through their eyes for each family member.

With all of this, that weight seems to get heavier but I HAVE to carry this magic on because Grace and Ev deserve it.  They have had so much of their childhood taken from them that I must put a brave face on and carry on through the Holidays and with our family traditions.
 
Grace and Griffin would have sleepovers in each other rooms because they could hardly contain themselves with excitement on Christmas Eve.  I now hear Grace planning a sleepover with Ev… Everett is not Griffin, the age difference is a tough one especially when they were blessed to have a little “Buffer” (Griffin) around to break up the age gap. But I thank God they have each other especially during the holidays so they can experience our traditions together, create ones between them and hopefully carry them on to their families.  It’s like a ray of sunshine when I feel like my skies are gray.  

Last night I stopped at the cemetery just before dark to “check” on Griffin.  Once again I immediately felt a smile across my face, with tears in my eyes.  This is our 3rd winter without Griffin, and the Cemetery workers still “plow” a path down Griffin’s row.  Not only is this the only row they do, but it goes down the entire row but they also veer off a little path right to Griffin’s Stone.   These workers, these strangers, even after 3 winters are still thinking of my Griffin… and understanding the need for this path so others can get to him whenever they want.   To me it’s like another ray of sunshine when I feel like my skies are gray. 
 
Then I think about Griffin’s Guardians and where we have taken this organization to. I will admit, it is hard on those days when I receive a new referral for a 4 month old little baby diagnosed with cancer, or the referral for the 12 year old boy that has relapsed.  It’s hard to be brought back to those early days when our lives forever changed.   When I meet families, I usually just say I'm with Griffin's Guardians and explain ways we can help them.  I don't ususally tell them that I had a son pass away to cancer, because who wants to look at a mother whose child died from cancer while they currently have a child battling cancer.  But in some cases I will be asked, "Are you Griffin's mom?"  Those are 4 words I will never tire of hearing in my lifetime.  I feel like I want to shout from the mountaintop "Yes, Yes I am the lucky one to be called Griffin's Mom".  That's when I think about the amount of support we receive from all walks of life, from friends to complete strangers, from those far and near that help us carry on Griffin’s legacy and allows me hear those 4 words "Are you Griffin's mom?".  Yet another ray of sunshine when my skies feel gray.   

I received a note from a mom thanking Griffin’s Guardians for the support we have provided to them.  She described Griffin’s “light” so beautifully.  “We are so deeply sorry that Griffin passed away and that your family has endured so much pain.  But we are profoundly grateful that his spirit and energy continues in the wonderful things you do for perfect strangers.  I hope you know that his smile and laugh lives on in the gifts you give to others-in the sunshine you are working so hard to create.  Out of pain you have created love, which is a remarkable feat”!

For most of you know, Griffin lived life to the fullest… You knew he felt it in every one of his bones when he would say, “It’s a great day to be alive”.   I reflect on his life and feel It’s like living a life with rays of sunshine, that’s how he lived!  Having the ability to find the sunshine, to live for the sunshine but most importantly embrace the sunshine when it feels like the skies are gray.  This is what I hope to carry on to Grace and Everett during the holidays.  It will never be the same, but together we can always find the sunshine, thanks to Griffin!
 
I wish you all a new year filled with blessings, filled with love and most importantly filled with sunshine.
 
Love,
Erin  

When Adam and I started Griffin’s Guardians we knew helping families locally was on the top of our list to do.  We saw daily the hardships, loneliness, stress that families that surrounded us at the clinic had to endure and those that didn’t have the support that our family had.  So we established a wonderful relationship with Upstate Golisano’s Childrens Hospital who refers families of a child with cancer to Griffin's Guardians.  We make contact with the family and learn about their struggles and how we can help them.  Since November we have helped several families up to $500.00 each by paying their kerosene bill, car insurance, gas cards (because we have families who travel daily to the hospital- 50 miles one way), medical copays, groceries and rent! 

If a family is in good financial standing we plan a memory for the child.  In January we hosted a frozen themed party at Billy Beez in Destiny for a 3 yr old little girl with her family and friends!    Adam and I know how important it is to make as many memories as you can.  A cancer diagnosis reiterates how truly short life can be so for Griffin's Guardians to offer this option is amazing. 
 
Another piece that Adam and I really wanted Griffin’s Guardians to part of was Childhood Cancer Research! Did you now in the last 20 years, only three new drugs have been approved that were specifically developed to treat children with cancer? 

The chemotherapy that Griffin took, was not meant for a child, it was meant for an adult.  We had to do a lot of tweeking of his dosage to see what he could handle.  This isn’t right.  It isn’t right to expect these children to fight the biggest battles of their lives when the treatment in many cases wasn’t even designed to treat them!
  
So when the St. Baldrick’s Foundation came to us in April of 2015 and asked for us to partner with them, we were ecstatic.  St Baldrick’s is the worlds largest private funder of childhood cancer research.  In May of 2015 we presented St Baldrick’s a check for $25,000 to fund a research grant in Griffin’s honor.  Adam and I read through 30 different grants and chose one that related to brain tumors.  When it pertains to brain cancer the most challenging piece of this is finding something to cross the “blood brain barrier”.  

Our research is being conducted at the University of Michigan (and if you know my husband- he is a DIE HARD Michigan State University fan and alumni) so this research had to be exactly what he believed in to pick one conducted at his biggest college rival.  LOL


***

On December 28, 2015 my brother in law and sister in-law, (Matt and Callie) went to visit the research facility and met the researcher, Dr Chertok!  One of the greatest attributes that St Baldrick’s Foundation offers us is their transparency.  Matt and Callie toured the area where the research is being conducted. Dr Chertok was blunt about her frustrations with the lack of funding and research for pediatric cancer and expressed how grateful that out of all the grants we reviewed, we believed in hers!


Her Research:

Dr Chertok's goal is to make surgery for tumor removal a thing of the past and make non-invasive tumor removal or destruction a very real, effective option for families. Her research focuses on delivering "chemicals" or drugs via microbubbles directly to the tumor site.  This in return will ignite an immune response to destroy the tumor.  In addition, it subsequently will destroy the tumor if it returns since the body now would recognize the tumor as "foreign" or bad; similar to the way a vaccine works.

She indicated the drugs that they are currently using are not necessarily new, but they are all drugs that have failed in clinical trials. They failed because while they liquefied the tumor they also caused immune responses throughout the whole body and vital organs were attacked. Her research is working on the delivery of the drugs directly and exclusively to the tumor using a combination of micro-bubbles that are injected through an IV.   They then would use an ultrasound that guides those micro-bubbles to the correct spot and then "pops" the micro-bubbles, causing the drugs to be released directly into the tumor. So far they have seen very promising results in mice.

The biggest component for Adam and I... is for our supporters to know where their donations are going, when we indicate we donate to research.  It isn’t just “going to research” but it’s going somewhere we are actively part of the process.  The other cool piece is that anyone who shaves their head under “Team Griffin” for St Baldrick’s, ALL of those dollars raised directly funds the research we have chosen.  It’s amazing to us to be able to share this with the shavees, especially the children who shave so they understand exactly the impact of all the money they raised.

in·no·cence
ˈinəsəns/
noun

1. lack of guile or corruption; purity.

I remember being told that the second year without Griffin was going to be harder than the 1st.  I remember thinking how could it get any worse than what we were experiencing at that moment.  Well I can honestly say now, I agree- the second year is worse.  The first year we were numb, we were walking in a fog, and quite frankly still in shock. Odd to say but it's almost like that shock protected us from feeling the intense pain.  

Now in the second year, reality settles in.  Griffin is never coming back.  Not that we believed in the first year that he was going to come back to us, I think it's more the agony of accepting that he is gone that occurs in the second year.  Accepting that nothing can be changed.

As a mother I grieve for Griffin, I grieve for the life that I use to have and I now grieve a life of innocence.  When we first have children we don't spend too much time thinking "what if they die?".  Yes we worry, a natural instinct as parents.. like when they get on the school bus for the first time- we worry, when they get their drivers license we worry, when they go to college- we worry.... but do we really go as far as "what if they die?"  

In December, one Friday night Everett started to experience a painful stomach ache.  With him crying out in pain, he begged to go to the drs and at this point he was petrified of drs... so for him to be begging to go we knew something wasn't right.  This stomach issue created two ER visits and 1 Five Star visit in one weekend.  As we walked through the doors of the ER... the same ER that we heard the life changing words for Griffin, it brought that trauma back to the surface.   We again walked the halls with the same drs we faced when Griffin was getting his work up done in August of 2013.  In hindsight those doctors knew it wasn't a concussion for Griffin like we thought, they knew it was much more serious but before they told us otherwise.. they needed the medical proof to support.   For those hours we waited for results, we pushed those scary thoughts out of our head... focused on a possible concussion and honestly even went as far as thinking he had an infection and he just needed a strong course of antibiotics.. because we at the time were living a life of innocence. 

So now we are in the ER with Everett...When I signed him in, Adam and the kids went to the bathroom, and I said to the the admitting nurse,.... "I have lost one child to cancer, and will not lose another".  I urged every test possible to be conducted so they didn't miss anything.  We were thinking maybe it was his appendix or a possible bowel obstruction because of the intense pain.  As we waited for testing to be done and the results... it was torture.  I remember saying to Adam "what if it is bad, like really bad?"  The sad part is, Adam couldn't reassure me it wasn't anything "really bad"..he couldn't tell me it was going to be ok....  because we have lost that innocence as parents.  After 6 hours in the ER we learned that Everett had swollen lymph nodes in his intestines, which is painful and mimics appendicitis.  I asked every Dr from attending, to resident to even the nurses for reassurance it had nothing to do with cancer.  They all said no, and most likely from an infection.   We felt like we dodged a bullet this time....  

So now we grieve for Griffin but we grieve the innocence to parent Everett and Grace. I will never look at a headache the same. I will never look at growing pains in Everett's leg as just that...growing pains.  I will never look at Grace and think I lost one child so I won't lose her.  Guess what.. I live everyday with the notion that something could happen to Everett and Grace.  This is just another "ugly" that comes with losing a child to cancer (losing a child to anything really).  This "ugly" drives me to continue to spread Childhood Cancer awareness. To not only educate those who will hopefully never experience this loss but to encourage everyone to keep Childhood Cancer on the forefront.  With every newly diagnosed child with cancer that we help through Griffin's Guardians.. my heart feels heavy for them because they too have now "lost that innocence".  

I hope that if you are reading this, you are still helping Griffin's Guardians reach these families right here in our community..helping us to spread our name, helping us to spread our mission , helping us to bring a little bit of sunshine into their lives because they have lost so much already with just hearing the words "your child has cancer".  

xoxo 
​Erin 

Jennifer Sanders did a great job with "Above an Beyond" series that featured Griffin's Guardians.  So honored she chose to help us carry out our mission.  Once we got past my "munchkin" voice in the beginning.. it was such a bittersweet segment.. it was heart felt, informative, touching.. all of it.. Then we are reminded this is all because of a little boy who continues to inspire.  A little boy that I once hugged and kissed everyday.  A little boy who continues to teach us.  A little boy that I call my son.  

You will see sweet Lillian in this video.. Keep her beautiful family in your prayers! 

Click Here to watch!!

She weeps when she is alone.
She hopes when she is able.
She longs every moment of every day.
She breathes only because she must.
She wishes it were different.

His birthday has come and gone, his 1st anniversary has come and gone, his friends have grown taller,  his sister has tried to teach their younger brother the Tango , his little brother has been trusted to learn how to shoot his bow... and as his mom, I feel empty. 

Some say the second year is harder than the first.  Even writing the "second year" is hard to type.  I can't believe we are in the second year of not having Griffin here.  It's not fair.  I have found myself asking more and more these days, "why Griffin".  

The hospital has a memorial service for the children that have died.  It was Griffin's time to have his leaf placed on their tree that will be there forever.   I remember sitting there feeling brave, feeling like I am not going to cry.  I am going to go through these motions because I was there to represent Griffin but thats it.  I looked around and saw such sadness in so many faces... and I kept my brave face.  The father sitting in front of me, under his sunglasses I saw one single tear trickle down his face.. that didn't break me... It wasn't until they ask you to say your childs' name in front of everyone.  The moment I said "Griffin Engle"... it was all over.  It was real, I couldn't continue this idea of me just "representing" Griffin with a brave face.  Saying Griffin Engle, I had just acknowledged his life and his death.  I wasn't representing anymore, I was there because my son died and I was surrounded by people who also lost their child.  Reality is harsh, and is something you can't escape.  

As the seasons change, most of you that know me- know that means going through the bins of the clothes in storage that I have saved for the kids.  Of course, there are the clothes that were Griffins' that Everett is now ready to wear.  As I went through the clothes I could remember Griffin wearing them.  A little plaid button down shirt reminded me of his first day of Universal Pre K.  I remember snapping pictures of him with his buddy Michael, even holding his hand because they were so excited...


​Little did Griffin know he was going to make the best little buddies in that class that were going to be by his side until the day he died.. literally until the day he died.  

Then there is the navy blue shirt with red numbers on the front.. I remember Griffin being hot one day and just running right into the sprinkler fully dressed.. one of best pictures of him was captured this day... the pure joy of a child just loving something as simple as a sprinkler, his smile was priceless.. a child who's biggest worry was that he didn't grab a towel to dry himself off.  A child who probably never heard the word cancer before.  A child who the only time he spent in the hospital was the day he was born.  A child who deserved to live a long, long life filled with the simple pleasures of a sprinkler.

​Or the matching shirts with a dump truck on them that he and Everett would wear to make their mommy happy.  Or the multi colored Tie dye shirt he was wearing the night that he and Grace were throwing playing cards up in the air (like "52 pick up") and laughing so hard.  

I am a planner, I like to think ahead, I like to be prepared and I like a good deal.  I have clothes that were bought for Griffin for when he was older.  Clothes he will never wear.  Clothes I don't even know I will pass to Everett.. as it's a reminder that Griffin never wore them.  

I know they are just clothes and I am rambling.. but something so simple.. going through hamey downs is a gut wrenching experience.  I held up a shirt to show Adam and it instantly brought him tears.  When Everett saw our tears, he asked me why I was crying.  I told him I miss Griffin.  He then said: "Don't worry he is coming back after his surgery".. and then quickly asked "what was wrong with his head?".  So I found myself reiterating that Griffin had cancer and that he died and wasn't coming back.  He was in Heaven.  Doesn't get any easier reminding this little boy of the truth...   

I am asked all the time, how I am able to do what I do with Griffin's Guardians?  The answer is quite simple.  "I have no idea".  I have no idea how I even get out of bed, how I spoke in front of 250 people at the Gala, how I walked back into that hospital to meet with a social worker to discuss Griffin's Guardians helping more families with a child with cancer.. and going into the exact room where Griffin and I would meditate... repeating over and over " I am strong, I am brave, and I will beat this".  

Maybe those words were meant for me... Maybe it was meant for me to have a meeting at the hospital and be brought into this special room to remind me.. Maybe 2 years ago when I taught Griffin, " I am strong, I am brave and I will beat this" maybe that was meant for me... for my grief.... the difference is saying these words with a broken heart.... but maybe they were meant for me.....

    

Thank you for visiting the Griffin's Guardians website.. be sure you watched the video first!!

Welcome everyone to our first Annual Gold Tie Gala!  Most of you know my husband and I created Griffin’s Guardians in honor of our son, Griffin who passed away to brain cancer at the age of 7.  It only seems fitting to start the night off talking about the little boy who continues to inspire a community!  During his battle with cancer he taught us what true courage is, he taught us to never give up, he taught us to keep smiling and most importantly he taught us the definition of complete, unconditional love.  I will probably say this at every Gala from here on in.. But I will NEVER say he lost his battle to cancer but that he won.. he won the hearts of so many!  
His presence here on earth was a gift to all of us and in his honor we will carry on his fight against Pediatric Cancer and we promise, Griffin, to NEVER, EVER Give up!


First I wanted to give A big thank to Tim Green for coming to be our guest speaker for our special night.  Most of you already knew that Griffin won the contest and was a character in Tim’s book.  But what you probably didn’t know is that when Tim learned Griffin had taken a turn and was placed on Hospice, he sent the bound manuscript for the book, Kid Owner, to our home.  I was able to read the book to Griffin so he could hear his name and hear the story.   A memory I have to cherish forever… In addition, through a very generous donation by Tim and his wife Illyssa, all of the proceeds from Kid Owner that is sold tonight- all goes back to Griffin’s Guardians….Thank you Tim, for you compassion and generosity! 

A year ago I stood in this room and remember thinking how much love I was surrounded by at Griffin’s Celebration of Life.  I thought I would never be surrounded by that much love again… until right now.  I am still in awe that we sold out in the first day, in awe over the sponsors, and in awe over the very generous donations we received for raffle baskets!  Thank you all for your unconditional support… and for not walking behind Adam and I but beside us on this journey.

With that said there are so many I have to thank for making tonight what it is. 
To my husband and children.. thank you for putting up with my craziness.. Some of you might find it difficult to comprehend that I can get a little crazy, I might worry, I might get stressed.. and maybe the ones closest to me.. might just feel the wrath of it.. so thank you Adam, Grace and Everett for putting up with me that last few months.. But In all seriousness though-we are all in this together.. I gather my strength from my husband who literally has taught or has tried to teach me to “not sweat the small stuff” and for Grace and Ev- my determination comes from these two.. because I want so badly for you and for your future children to live in a  world a free of Pediatric Cancer. 

To my committee, I thank you from the bottom of my heart.  People say it me all the time, “look what you have done with Griffin’s Guardians in such a short time”.  I am quick to reply… “I have surrounded myself with amazing people… so to my committee who spent hours making tonight what is, for the sacrifices your families may have felt and to the late nights of putting the final touches on things.  I thank you and I love you! 

To Lakeshore Yacht and Country Club, thank you for not just being Adams employer but for embracing our family, supporting Griffin’s Guardians but importantly for becoming an extended family to us. 

When it comes to our sponsors of the night, I just can’t name you and thank you because your business is more than just a name to me. .. you are all more than that.. Whether you started from the beginning of our journey,  the middle of it or more recently there is a connection between each of you.  

The Gem Diner isn’t just a restaurant, it became a place where our friends and family could be together when things got tough with Griffin.  

Aspen Athletics Club wasn’t just another gym to Griffin, it was a place where Griffin could hang with his Sports Trainer, Mark and become the athlete again he was prior to cancer striking him.  

Summerwood Pediatrics- wasn’t just my childrens’ pediatrician….. Griffin was Dr. Drackers patient but he became mine and Adam’s friend.. he took care of us, our whole family and Griffin.. And we got to see the big teddy bear that he really is!  

And then there is Tom Pirro.. never did ever think I would become friends with the last person who carried my son out my front door for the very last time.. we are friends because Griffin wasn’t just another client he was so much more to Tom and his staff.  

Then there is Edible Arrangements- who always flies under the radar but yet there commitment is evident in every event Griffin’s Guardians has done.  

Wilkinson Finishing- who have been quiet supporters from the beginning, you learned of Griffin through your nephew, one of my dearest friends.. what was important to him became important to you… and you became one of the first businesses to become a sponsor.

Syracuse Orthopedic Specialists was also another quiet supporter.  SOS didn’t hesitate to become a sponsor even though they knew they weren’t able to attend the gala.  They made sure some of the bravest, strongest people I know could be here tonight.  They gave their seats to the Drs, Nurses, and families that are on the front line of battling Pediatric Cancer..right here in CNY from our own Upstate Pediatric Oncology floor. 

And then there is Gina from Bliss Bridal and Formal Wear- I walked into your life when I needed to get fancy for the Boeheim Basket Ball and it was an instant connection- your positivity and energy that you believe Griffin’s Guardians will do great things is contagious..  

To Wegmans- I never thought that our local Syracuse weather was going to help us make our connection.  I have to believe you were so moved by our organization at Wayne Mahars’ Tailgate party because you instantly wanted to be part of this night..

Last but not least, Todd Reutsch from Printing and Promotional Solutions … our Presenting Sponsor of the night…

~One day After dropping off a Griffin’s Guardians sign that Todd’s business had made, he stood in my kitchen as I was thanking him for all the support he has given us personally and through his business … I may have been long winded (surprising to some) but Todd’s reply was simple.. "Amy and I believe in you, and we believe in Griffin’s Guardians and helping children and because of that it’s easy to support anything you do”. I once again am reminded even though tragedy struck our family,…that there is so much good in this world, and Todd is just one example.  So I thank you Todd!  I always remind Adam of this.. “behind every good man is a great woman”.. So thank you to Todd’s wife, Amy for sharing so much of Todd with us and for being a huge reason why Griffin’s Guardians has been so successful. 

With our first annual gold tie gala, comes the new tradition of the annual Honorary Guardian Award…
Giving, Caring, protecting, advocating, passionate.. these are some of the words that describe the spirit of the Honorary Guardian.  The recipient of this award is an individual who is dedicated to making a difference in the world of pediatric cancer for families and children who have been affected by this life- changing disease.  There are many people in our community who go to great lengths for these children and families by volunteering their time, donating their money or raising awareness.  There is a person in this room today, that portrays all of these characteristics .. This person has shaved her head 3 times for St Baldrick's and on her 50th birthday, instead of receiving gifts for herself- she asked friends and family to donate to her St Baldrick's fund which resulted in her raising over $5,000.  In March of this year, she became the Team Leader of the Team Griffin group for St Baldrick's and
lead her group to raise over $14,000. 

The recipient of this award is Lisa Eddy. .. As a mother of 5 children, and grandmother to 2 she is leading by example- she truly give with all her heart .. and her passion you could see in the tonights' slide show when she said “Each child deserves to know there are people out there fighting for them to find a cure”
        Lisa Eddy, we want to recognize your compassion, your dedication and your hope to end the world of Pediatric Cancer.  We want to thank you for being a Griffin Guardian!

I have spent a lot of time thinking about how I was going to present the harsh reality of Childhood Cancer and what it does to the child, to the parents and to the family as a whole.  I was going to tell you all the milestones that Adam and I as parents will miss out on with Griffin gone, or what Grace and Everett will lack for the rest of their lives because the glue that stuck them together is gone.  But the sad reality is … you really can’t ever get a true understanding of that pain, heart ache of such a tremendous Loss.  You can’t put yourselves in our shoes nor is it fair of me to ask you…

What I can do instead … is to inspire you, is to empower you, like with the song that ended the slide show,  Is ask you to be Brave… Finding a cure for pediatric cancer is NOT going be easy, it isn’t going to happen tomorrow… We will continue to hear of another child being diagnosed with cancer, or another one passing away from it.  But through Griffin’s Guardians if we keep up with the momentum we have now, in time we will hear less stories of cancer in children. 

Griffin’s Guardians has already made a huge impact in our community and beyond.  Keeping in mind we have only been in existence for 10 months, it hasn’t even been a YEAR! 

We have been involved in several school aged programs in 7 different schools, whether it was through book drives, band aid collections, the Hands of Hope project or making Chemo care kits… we are getting the young involved.   
We have worked with 3 different high school sports teams, raising awareness and funds bringing in close to $11,000 to Griffin’s Guardians. 
We hosted our First Annual Kicking Cancer in the Nets soccer shoot out in June.. we had 250 participants in the tournament with another 250 in spectators.. again raising over 10,000 for Griffin’s guardians.
We helped local families right here in Central New York whether it was assisting with a copay for childs' medicine that it was imperative he have, helped another family make memories between siblings with the purchase of an Xbox or the assistance we gave to another family with house bills. 
We involved all ages and genders with our Project pillowcase collecting over 300 pillowcases from all over the country.

Keeping in mind we have only been in existence for 10 months!

We are changing the way a child can view radiation, we are celebrating their bravery and strength by completing radiation and turning a scary mask into anything they want. 

Until you watch a child go through radiation you have no idea how brave a child can truly be.  Griffin was one of the youngest children to undergo radiation and not have to have anesthesia administered every day- which is a remarkable thing in itself!  This boy who just turned 6 had this mask completely cover his face, and then it was strapped to a board so he could not move at all.  If that isn’t scary enough he then was pushed into a narrow tube like machine and had to remain still for 10-15 minutes.  This is a tough task for a grown adult let alone a 6 yr old active little boy.  So when he finished his 33 daily treatments of radiation.. you bet it was a celebration.  It was important to celebrate that look how far we have come feeling and we have been able to celebrate with two families so far. 

We are involving people of all ages but most importantly the children are getting involved.. they want change… Most of griffin’s friends, it is a given that will support and do what they can for Griffin’s Guardians.. It’s their way to honor him, and their way to carry out his legacy so no one else has to go through this.. Then there are the children who never met Griffin but have heard stories of his life through mutual friends, through their teachers, through their parents.. And want to fight right along with us.. Its simply beautiful to see..

Again we have only been in existence for 10 months..

Then in April an amazing opportunity presented itself.  We were approached by St Baldrick’s Foundation to partner with them.  St Baldrick’s Foundation is the world’s largest private funder of childhood cancer research grants.  With help from Organizations like Griffin’s Guardians they are able to influence government regulations, recently resulting in the first new drug to be approved for pediatric cancer in more than 20 years.. you heard that correctly… first new drug for pediatric cancer developed in more than TWENTY YEARS!   Doesn’t seem right, does it. 

Through our partnership we have presented a check to St Baldrick’s in the amount of $25,000 to partially fund a pediatric cancer research grant that Adam and I chose. We were able to review over 30 research grants and chose one that we felt close to our heart.  The Drs hope in the grant we chose is to empower the immune system to fight brain tumors by delivering agents that alter the immune system activities.  This approach could lead to safe effective therapies for children with brain cancer.  Did you know, as parents, Adam and I had to worry about the chemotherapy and radiation therapies we chose to save Griffin’s life.. could have then caused him develop another form of cancer?   We need to research safe effective therapies for these children. 

Again we have only been in existence for 10 months…

Lastly, since our inception on Dec 4, 2014 I am so proud and honored to tell you that Griffin’s Guardians has already raised over $80,000 and that does not even include tonights’ festivities.! 

It has only been 10 months. 

All of this wouldn’t have been possible it weren’t for the support that is in this room right now... But we need to continue with the momentum we are on..

Did you know worldwide every 3 minutes a child is diagnosed with cancer?  We need to continue to raise awareness.
Did you know Approximately 1 in 285 children in the U.S. will be diagnosed with cancer.. We need to continue to fund pediatric cancer research
Did you know The average age of diagnosis for childhood cancer is age 6. The average number of years lost is 67.  We need to support these families who are hearing the devastating words, “your child has cancer”

As you can see, we are still have a lot of work to do….

I will end with a story…

Just a boy with a slingshot…

Most of us have heard the biblical story of David and Goliath.  After many of the soldiers ran away in fear, David, who was just a boy, volunteered himself to defeat an entire army and a giant named Goliath to save the future of his people from destruction.  With no fear, no armor and only 5 stones in his pouch, David looked Goliath in the eye, wound up his slingshot and with one stone defeated the giant.

As a mom hearing that my son had cancer, I immediately knew that Griffin faced a colossal Goliath in his body.  Cancer is an insidious disease, approaching ever so quietly, growing relentlessly and incessantly, sneaking away from home base to other parts of our body, building a resistance to drugs that would slay it and possibly return after we thought we had rid ourselves of it forever. We asked Griffin to fight the biggest battle of his life when his cancer returned but there were few options…he fought with no armor. 

Throughout his battle, I learned that my little boy, like David, was stronger than most adults.  Although most of our reactions to hearing the word cancer is fear and helplessness, it was Griffin’s zest for life and deep faith that created a barrier to all of it.  His “Never Give Up” attitude was going to carry me through his 14-month battle.  Through our eyes cancer is too big to beat, but through Griffin’s eyes and so many of the brave soldiers who fight it everyday, this Giant Goliath is too big to miss.  

These children are OUR FUTURE!  Not just the future of our local community but our Nation as a whole.  I believe as a Nation we have let these children down.  Did you know that only 4% of the national budget for cancer goes to Pediatric Cancer Research?  We need to bring change for these children and their families. Be that change, we can do it through this organization. If we take our cues for courage and determination from Griffin and the other brave little heroes battling cancer there is no way we won’t make a difference.

For the next 5 years, each woman who attends the Gala will be given a stone charm (like the 5 stones David had to defeat Goliath) – we are calling them 5tones for Brave Little Heroes.  Each year the stone will have a different meaning.  This year the first stone represents: COURAGE.  Griffin was not afraid to face cancer.  It takes courage to fight the giants in our life especially Pediatric Cancer.  I believe through Griffin's Guardians we will make a difference.  As mothers, fathers, grandparents and friends we ask that you stand up for the children.... stand up for their right to live long healthy lives.  To slay pediatric cancer like David slew Goliath, we need to make the commitment to do everything in our power to fight the disease. We are full of doubts and fears. That is only natural. Gather up your strength and intelligence, make that commitment, and we can win the battle.  We ask you to face pediatric cancer with your stone- cast it hard and well and make a difference so we can defeat this giant Goliath.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”  ~Mother Teresa