For Our Warrior, Jeff
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
