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For Our Warrior, Jeff

$115,191 of $110,000 goal

Raised by 1,010 people in 6 months
Created August 1, 2018

To our Family, Friends, and Friends of Friends who have followed Jeff's story....

As many of you already know,  life changed for our family in April of 2016.  My brother Jeff Leloia was diagnosed with brain cancer at the age of 33.   Before we dive into Jeff's story, I want to first tell all of you about Jeff and for one second, forget about this terrible disease that has changed our lives and his life forever.   My sister and Jeff's story is a true fairytale.  Two teenage kids (18 years old) meeting at the very beginning of college- Quinnipiac University.   Since the day they met, the two of them have been inseparable.    They are the two nicest people you could ever meet.   They never asked for anything out of life besides being happy together and wanting to start a family.    Its a love like no other and one that I look up too everyday.  They have been together since 2001 and married in 2009.   As so many of you know,  I met my husband at Jeff and Alyson's wedding.  Tommy was Jeff's groomsmen and I was the MOH.  From there, it was history.  Tommy and I owe much of our lives to the two of them....   Jeff and Tommy were best friends and now brother in laws. It couldn't have worked out better!     Jeff and Al went onto have 2 children since 2009. Vanessa is 6 years old and the happiest little girl.  Nicholas is 3 and loves trains and giggles at every little thing.    Life as we knew it, was as perfect as it could be.   

In April of 2016, everything changed for us when Jeff had a seizure.  I will never forget that day as long as I live. I had just hung up the phone with my sister and within seconds, it happened. Alyson had called back in a panic and I assured her it was probably nothing to worry about.  Boy, do I wish I was right.  Unfortunately after many tests, we discovered a brain tumor was pushing on his motor area (which caused the seizure).  

In September of 2016, they removed a Grade 3 brain tumor at Columbia Pres in NYC.  He underwent 6 weeks of radiation and chemo cycles for almost 1 year.   Things seemed to be okay....

In October 2017 a questionnable "spot" showed up on his MRI and this "spot" had been growing on each subsequent MRI, raising concern for a recurrence.  We were told regular standard of care was not going to work (regular chemo) so they opted to find a clinical trial that would hopefully help.  On Jan 22 of 2018, Jeff entered into a Phase 1B clinical trial out of Columbia Pres. in NYC.   Jeff was in the hospital for over 50 days during this trial.  Since he was the first person to enter this specific trial for a long period of time, side effects were not known (but of course, we knew there was a risk).     The trial left Jeff with weakened mobility on one side of his body.   He went to Kessler after the trial to work on getting his strength back.  While the strength on his one side did not come back fully, Jeff's positive attitude remained.  We continued to live life as best we could knowing he would be monitored every 4 weeks with MRI scans.  He came home from Kessler in March of 2018.    As you can imagine, being away from home for almost 2 months was beyond difficult but our warrior never complained.  

In May of 2018, his MRI scan came back showing something....doctors were unsure what this was and hoped it was an effect from the trial he had done.  We continued to monitor it.   We planned our family vacation to Lake George in June.  The day before we left for vacation we received news that the latest MRI was still showing this "effect" and the doctors believed it was cancer again.     As you can imagine, it was a devastating blow to find out the day before we were supposed to leave....But despite this, we went on our vacation and had the best time.   But are you surprised? That is who Jeff is....Despite overwhelming circumstances in his life, Jeff has never gave in.    I am so proud to be his sister.

After our few days away, we knew we would come home and have another battle to fight.    The doctors had suggested they biopsy this new area to determine how best to treat it.   We were told it would be an in and out situation (an overnight) but unfortunately it was not. Jeff went in for this biopsy on July 11 (Alyson's birthday) however his speech and now the "good side" of his body was weakened.   This was due to the biopsy.    Again- pure devastation.   While we knew the cancer would eventually impact his movement and speech (due to where the cancer is in his brain..by the motor strips), we were not prepared for this to happen so suddenly nor for it to be because of the biopsy we were assured would have no risk.   This has been one of the hardest parts as a family to watch.     Once this happened, the doctors were unsure if something had happened during the biopsy (stroke, etc) so they took another MRI.   It was not a stroke, etc so the immobility and speech issues were due to the biopsy they did however the MRI showed something we were also not prepared for.     This day was the worst day of all our lives since April of 2016.

On July 13th, we were told that the MRI showed the cancer had spread to the other side of his brain.    Not only were we left to deal with this horrible news but we also now had to deal with the immobility on his "good side" due to the biopsy they had done.    Jeff had to go back to Kessler Rehab for a few days but we were anxious to get him home immediately because we know time is now precious.     He is now home and we are making him as comfortable as we can given the situation at hand.

While the doctors can't give us timing -- and clearly they are very unsure of many things when it comes to this awful disease, we were told if wanted, Jeff could opt for radiation with a mix of immunotherapy.   Jeff was now considered in Stage 4 and the cancer showing up on the MRI was most likely a glioblastoma.   The prognosis of a glioblastoma is not great but we will continue to fight and NEVER give up hope that a miracle may come our way!!!   Our warrior will not give up despite his physical complications either!!     We had a chair lift put into the house to help bring Jeff from downstairs to upstairs and a ramp has been put in on the outside of the house to make it wheelchair accessible when he has to go to radiation (He goes back and forth to the city for radiation through all of this).  

Our family has not asked for help up until this point.   While Jeff's story has been out there, we have shielded everyone from all the details- the hard stuff.      While none of us know what tomorrow will bring, this is what we do know.

Jeff is now unable to work as his position has been released at this point (he has not been able to work since the clinical trial started in January).  My sister has had to stop working as a Physical Therapist and is now acting as his full time caregiver.     As you can imagine, this has been extremely difficult for her and words will never be able to explain what she is going through.     Due to the fact that she can't work and his position has been released (he carried the benefits), the insurance is no longer covered.   They are offered COBRA to pay on their own for the time being.   Insurance only covers 1 hour of home health care for 12 visits and unfortunately, Jeff now needs more.    My parents, Jeff's parents, and my husband have also been acting as caregivers and helping with the kids but we need more help- everyone has done a tremendous amount so far.  Family and friends have done so much already too and we thank every single one of you but at this time, we are hoping to raise some money for Jeff, Alyson and the kids to help pay for the full time aide we will need (approx. 250 a day), help cover some insurance costs (approx. 1600 a month), installing whatever other equipment is necessary, etc.        

Any donation would be MUCH appreciated.  Every single dollar of it will go to help Jeff and the family during this horrible time and anything that is left, will go directly to Alyson to help with the children and home.    Please consider donating to the Leloia family.    

It saddens me that this is something we even have to be writing...I have always been the one on the "other side" of these pages.   

My brother is my HERO.  He is this entire family's hero.  And we will never give up hope.  We will continue to fight this terrible disease until we can't anymore.  We will never stop trying to find a cure so this doesn't happen to any other family.   At 35 years old, no man should ever go through what Jeff is going through and has gone through.  Take a minute today to hug your loved ones and tell them you love them.  In a split second, life for us changed and the scary truth is, it could happen to any of us.  This disease isn't hereditary- it just happens.    Vanessa and Nicholas's lives will never be the same because of it and my sister is watching her best friend and husband fight for his life.     It is unimaginable and absolutely unnatural that this is happening to their young family....

We love you Jeff.  Not a day will EVER go by where we don't fight for you and your family and for others who are battling this same disease. 

Good Vibes Only to our Warrior


Pam




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Arrangements for Jeff:

Thursday, 2/7/19
Tuttle Funeral Home
Rt 10 West
Randolph, NJ
3pm to 8pm

Friday, 2/8/19
Memorial Funeral Mass at St. Virgil's
Morris Plains, NJ
10am

Cemetery
Gates of Heaven
In East Hanover, NJ immediately following Mass

After the cemetery burial we will host a Celebration of Jeffs Life at Ravello's in East Hanover. All are welcome to honor our warrior.

Tuttle Funeral Home Website will be up later or tomorrow with all other information
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Dear Family and Friends - This is Alyson, Jeff's wife:
It is with a very heavy heart that I write this post. Yesterday, on February 2, my husband and bravest soul I'll ever know, lost his 2 1/2 year battle with brain cancer. He carried himself with grace and dignity throughout multiple surgeries, chemo, radiation, a clinical trial and infusion therapies. He always had a smile on his face, even when the simple act of smiling became a struggle. When he was first diagnosed in April 2016, he told the doctor "When life hands you lemons, you make lemonade" and he did just that. He was a fighter in every sense of the word and his driving force was our family. This cancer forced us to live every day to the fullest and to never take anything for granted. There are no "givens" in this life. A hard lesson to face far too young. Even though Jeff's life was cut short, it was truly an amazing one. God just had a different kind of plan for him. His journey has touched so many people in a positive way but it does not define him. Jeff will always remain an amazing husband, son, father and friend. I was lucky enough to have met him at such a young age that we had 17 wonderful years together. Some people don't have that in a lifetime. He was the other half of my heart. Our love story was beautiful because it was just easy. It fit perfectly and I am grateful for that. If a silver lining can be found in the midst of such sorrow, it is this: ALL of you - family, friends, friends of friends, our Randolph community, colleagues - Jeff's journey has touched each and every one of you in some way and YOUR support and love truly leave me speechless. Jeff was so grateful and in awe at all the generosity poured onto us. Donations, meals, rides, babysitting, visits, prayers, and physical help with Jeff when he could no longer do the basics himself are beyond appreciated and will never be forgotten by myself and my family. Jeff wanted to be remembered not with sadness or pity, but with laughter and smiles. He told me he wants his kids to remember him being the silly Daddy he always was. And that is exactly what I am going to do. I truly believe he is our angel, all around and ever present. I believe he is up on his skates playing hockey, rocking out to his favorite Foo Fighter's song and smiling down at all of us saying, "THANK YOU, I'LL ALWAYS BE HERE".
Arrangements to be posted soon.
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Hello Everyone,
12 days ago, I posted the latest update about Jeff. We wanted to keep everyone informed on what the latest was. Since that post, Jeff has decided not to do the clinical trial we mentioned that was out of Overlook Hospital. When we received the details behind it and what it would entail (plus no evidence behind this), it was not something he nor the family felt was doable considering the current state he is in. It is with an extremely heavy heart that I have to write that Jeff has officially stopped treatment. We have brought in hospice for assistance as well. He is still home at this point (things are changing daily so we are unsure if he will continue to stay home) and Alyson has been taking the absolute best care of him. It is remarkable what she does on a daily basis and how she manages to even pick herself up out of bed in the morning. But she does. It is the most absolute unfair hand anyone could be dealt but especially at such an young age. No one, no matter what the age, should be doing the things she has and continues to do.

There are truly no words that can explain what this disease has done to Jeff and our family. Jeff fought very hard for two and a half years and he did it with grace. It was a long two and half years at that but he never ONCE complained. He is and continues to be the biggest inspiration in our lives. Unfortunately, it doesn't matter how strong you are, this disease always wins. It has taken away Jeff's ability to move, speak, feed himself, and every other task (small and large) that we all take for granted. As if this wasn't enough torture, Jeff has been experiencing muscles spasms from the high tone in his body (and yet, he is still alert enough to know what is happening). These spasms are extremely painful. We are doing our best to keep him comfortable and give him pain medications to help with this. But needless to say, we are watching him struggle everyday and deteriorate. For once, I am truly at a loss of words. I am sure you all can imagine the absolute hell that Jeff is going through. It can make your skin crawl when you really think about what it must be like for him. Its something you wouldn't wish upon your worst enemy. I ask that you all pray hard for him and Alyson & the kids. All we can do is hope that he does not suffer anymore than he already is and there is some peace for him. While it is extremely hard to say that, as a family we only want what is best for Jeff at this point and that is comfort and peace. For those who have been asking how to help, please feel free to re-share the GoFund me page. While we have raised an amazing amount of money, there is so much that goes into the next phase of this battle and will continue too.

To our family and friends and to those who do not know us personally but have been with us on this journey, thank you. It truly does take an army and you have all been that army for us during this time. Thank you for showing us the good that is in this world and letting Jeff know he is not and never will be alone.

Jeff would always refer to the Jimmy V speech and his words. He would reference these two quotes. I ask that you all remember these famous words that Jeff lived by the past two and half years and continues to live by even in his darkest hours.

"If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special"

"Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul."

I love you Jeff. May God help us through this next phase and give us strength. We will continue to fight for you and with you.
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Hi Everyone
Its been a while since we have posted an update about Jeff. As most of you know, Jeff started a drug called Avastin back in September when he was on the decline. It was an infusion that was given to him at the hospital every two weeks (Overlook). We weren't sure if this would do anything but Jeff was adamant on trying it.
Once he started the treatment, Jeff started to see some reprieve in regards to his symptoms. Avastin is a drug that cuts off the blood supply to the tumors and luckily for us, it worked for a short while. Jeff's speech improved and movement came back on his one good side from September through mid December. It was truly amazing and we were able to do a lot together in these months. Alyson and Jeff were able to get out and celebrate their 9th wedding anniversary together, we went on our annual apple picking day, we got him out to dinner a few times with friends and family, he was honored at a Devil's hockey game, & we enjoyed Halloween, Thanksgiving, and Christmas together. These moments meant the world. However right before the Christmas holiday, we saw that there was a decline occurring again. His movement was becoming much more weak and his speech was becoming slurred and it was much harder for him to talk. Based on the physical symptoms we saw, we had asked the doctor to move up Jeff's next MRI.

Jeff had this MRI done this past Wednesday and unfortunately, the image showed what we had all thought it would. The Avastin has stopped working (as it does at a certain point) and the disease was showing throughout the spots on his brain where the cancer lies. As you can imagine, this has been a truly heart breaking week for us. While the Avastin gave us 3.5 more months of Jeff feeling okay and this time that was given to us was truly miraculous, we are now faced with what we always knew would come.

At this point, Jeff has lost most of his ability to communicate. This has been the hardest part for him and all of his loved ones. We all are guilty of taking the simple things for granted but a conversation is something you don't think will ever just go away. We are coming to terms with the fact that we will never hear Jeff's real voice again or have a conversation. There are no real words that could describe how sad we feel inside. In addition to his speech, Jeff's good side is losing strength. He has been paralyzed on one side of his body for some time due to the biopsy but we always were able to manage because he had some function on his other side. Unfortunately, that is also deteriorating rapidly and Jeff is no longer able to walk at all.

I can only describe the situation as pure cruelty and torture. Torture for our poor Jeff and for those who are around him and love him especially Alyson. Jeff is still cognitively with it which makes this situation even harder. I am not sure what the right prayer is anymore as we realize that a miracle isn't coming our way. But we ask you all to keep them in your prayers and pray for peace and mercy. No one should struggle the way Jeff is. And the pain in our hearts is overwhelming.

At this point, they have two options. Jeff can either stop all treatment or there is a clinical trial out of Overlook that requires him to be there 3x a week. It is an IV drip and in phase 1 of the experimental trial. There is no real research behind what it can do or if it will even do anything at all. And it will not revert back what was been taken from him which is primarily everything. We did explain this to Jeff and he was able to communicate to us that he is not ready to give up and wants to live. I must admit that we were all shocked on his decision due to what he has been going through everyday. But Jeff's spirit and will to live continues to be unbreakable. It is truly amazing and I am so proud to be in the presence of such a real life Superman everyday. We will honor his request and do what we need too to get him to the treatment. It will likely need to be by medical transport. I am unsure of when it starts and since things have been declining on a daily basis rapidly, I am not sure what will even happen with this but we wanted to share the latest with everyone.

Please keep them in your prayers. We know what is to come eventually and pray for peace and strength for Jeff and for Alyson and the kids. He has fought so hard and continues too. He will fight until he can't anymore and as his family, we will never leave his side and we will fight with him. We ask that each of you do the same.

We will keep everyone posted as the weeks progress.

As always-- Good Vibes to our warrior.

Pam
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Raised by 1,010 people in 6 months
Created August 1, 2018
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