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