Luby Recovery Fund
This fund has been established by friends of the Luby family to help them through this difficult time. The funds will be used to cover medical and living expenses. We encourage you to donate to help this beloved family, any amount is appreciated. Thank you in advance for all your hope and prayers.
In our last update, Sam had just had all the screws and wires removed from his knee hoping for some relief. Not feeling the metal there was indeed a better situation but the pain still exists. He has had a few cortisone shots and is now getting gel injections to make up for the absent cartilage. Eventually he will need knee replacement. The doctor is trying to prolong that as much as he can because he has had so many surgeries since the accident and he is continuing to heal from most recent surgery. In March, he had his hip replaced which was a smooth surgery and continued recovery. It has relieved him of so much pain in that area and Sam is so glad that surgery is behind him and thankful for the great outcome.
Sam’s greatest obstacle is seizures. As we explained before they are Non-Epileptic Seizures (NES). It has been diagnosed as Post Traumatic Dystonia or Post Traumatic Movement Disorder from trauma to the brain. We have been to so many doctors; numerous Neurologists from Stony Brook, Huntington, Manhasset, New Hyde Park, Manhattan, Brown University in Rhode Island searching for assistance for him. There are no anti-seizure medications that have helped him because they are non-epileptic. He currently goes to a therapist for Cognitive Behavior Therapy where he learns coping skills. There is no rhyme or reason that we know of for a seizure to come on only that fine motor skills can trigger them (like turning a screw or writing) but all the other seizures he has experienced we have no idea what sparks them. Sometimes they even happen in his sleep. He can have five a day or none for two weeks and then they are back. When in full spasm it can last as long as 20 minutes and he will be completely exhausted after an episode. But yet again looking on the positive side; he does not loose consciousness, he can tell when one is coming on through ringing in his ears, the scar tissue in his lips feeling electric, a crawling feeling in his skin and numbness in his head where he had the hematoma after the accident. We recently went to yet another neurologist and felt hopeless leaving the office. Sam says if he has to live with these for the rest of his life that is what he will do. It is just so painful for him and for all to watch.
Sam still has the IVC filter in his chest from the double pulmonary embolism. All of his surgeons have wanted to wait for surgeries to be complete prior to removing but it now may be too late. He has an upcoming appointment with the vascular surgeon for some more testing to see if it can be removed.
My medical status remains the same, which I will gladly accept. I am living with Stage 4 Breast Cancer also known as Metastatic Breast Cancer. I am dealing with the symptoms of being forced into menopause along with the side effects of the medications I take. I still take oral chemotherapy and hormone inhibitors, iBrance & Letrizole. I still go to the cancer center bi-monthly for an injection of Xcheva for my bones, blood work to check my tumor markers and a visit with my oncologist. My next appointment is August 31 and hopefully everything will continue to remain the same or better! I am due for another head, chest, abdomen and thigh scan. For which I will get the prescription at my next appointment. Every ache and pain has me fear for the worst, until I set my head straight. Every doctor appointment brings fear of the unknown, until I am told all is ok. Every time leading up to a scan and then waiting for results brings stress, until I am told I can breathe again. Although I am not considered a Cancer Survivor. I am SURVIVING WITH Stage 4/Metastatic Breast Cancer….2 years since diagnosis.
Our kids are doing well. We wish we could free them from all of this ever having happened. But that is not the plan that God intended for them. They have experienced and dealt with these life experiences with strength and courage. Sam and I could not be prouder. They each deal with their emotions differently. We have tried to keep it real and be as honest as we can be. It is an ongoing process. You all have taught our children one of the greatest lessons in life, do for others. They have witnessed first-hand the difference one can make in another's life.
Grace is going into her senior year in high school. She has been working at McDonalds, babysitting and working an internship at the Vanderbilt for the HS Academy of Finance Program. She recently obtained her driver’s license and purchased herself a used Hyudnai Elantra. She plans to attend college next year and is looking toward earning a degree in Education. Peter is entering his sophomore year in high school. He has been Sam’s helping hands when needed. He recently visited our family in Vermont for a week and was treated like a king. He just started Summer practices for JV Football. Claire is entering 6th grade for her first year of middle school. She also took a trip to Vermont and she also treated like a queen. This Summer, she took a district cello lesson followed with an acting camp at Grace Music run by her favorite music teacher Mrs. Edwards. As a family, we were generously offered the use of the friend’s condo in Montauk. Those were beautiful days out east. And all Lubys that were ready, willing and able; we spent as much time as we could at Hobart Beach, Robert Moses or floating in the bay on the cutest wooden boat that Sam acquired for free at the beginning of the Summer. It has been a very good Summer for each of us!!!
HOPE and FAITH is what we have…We hope that Sam’s seizures will miraculously disappear. We hope that there will be a cure for this stupid cancer along with so many other forms of cancer. We have the faith that we will continue to be watched over no matter what happens. We ask that you please continue to keep us in your thoughts and prayers.
Today is a day to give thanks! Thank you to God for Sam still being here with us today, thank you to our angels watching over us, thank you for the love and support we have been shown from so many people. From all the bad, such amazing things have happened for us and for that we thank you all!!!
It was on this day two years ago that Sam’s horrific accident occurred and all of you stood by us and carried us through a horrible time in our lives. And then did so again when we asked for your for help a year later. To this day, we continue to have friends, family and Good Samaritans guiding us through these times and often when we need it most people offer themselves. We will be forever grateful to every single one of you.
We praise the Northport Fire Department, Suffolk County Police and the Trauma Team at Stony Brook University Hospital for their quick and miraculous responses. Sam would not be with us if were not for all of them. I thank God every day he was saved for so many reasons. But honestly, the greatest reason of all is because of the unknown of cancer. If I didn’t have him by my side now, the stress would be so much greater for the thought of our children possibly being without both of us at their ages. Although I know many of you would wrap your arms around them and they would never be truly alone, this is something that plays in my head over and over.
We wanted to update the photo on this page to show you what we look like two years after that horrible Summer. This photo was taken at Claire’s 5th Grade Moving-Up Ceremony this past June. We are all still standing. Although every day does not pass without obstacles, we are pushing through and appreciating what we have been given. Don’t get me wrong, we have our bad days that we have to dig through and even on those days of lost hope there are still things to be grateful for. Constantly searching for the silver lining and praying is what gets us through. We always say it could be much worse and there are others that are in far worse situations.
We continue to have people asking about how we are faring. It warms our hearts. There are times I can see in people eyes they may be nervous to ask. Especially with me, because of the nature of cancer. Never be afraid to ask, but also, don’t feel like you have to either. It is difficult and I understand. I know everyone’s hearts are pulling for us. Knowing that we have people to lean on and will understand if we shed a tear or two is yet another form of comfort. This is the reason why we are posting today. We want you all to know where we stand currently because so many people ask.
In our update from last Fall, I had explained that I received 100 on my Civil Service Clerk Typist exam and that I would be praying for a school office job that would allow us the medical benefits we desperately need, along with my not being in a classroom because of my immune system and time available for me to still be with my kids while giving me some time for rest. Mid October, I received that golden letter from Civil Service that the elementary school that Sam and I both attended needed to fill a 10-month secretarial position. I responded quickly and was later offered an interview.
Already in the parking lot the day of my interview, my Dad called me five minutes prior to my appointment time and told me not to go in yet and that he was coming to meet me. Worried he would take longer, I told him I would come to him. When I pulled up to his house, he was standing on the lawn crying. I got out of my car and he handed me a glass angel that Nolan Taylor Howe Funeral Home had given him after my Mom’s services. He told me to bring it in with me so that I knew my Mom was with me. I left him still sobbing on the front lawn and got back in my car to head back to the school. At this point, I was sobbing as well. After finding a parking spot, I had to look in my rearview mirror and wipe away the tears and actually had a pep talk with myself. I looked myself straight in the eye and firmly said, “Get it together!”. I slipped the angel in my purse and went into the school.
The medical insurance we were currently holding was expiring December 31 and we were not eligible for renewal because of our income/employment status. At that time, I was working per diem as a secretary and Sam was still dealing with his disabilities and needed surgeries. Our health insurance options were not looking good. It was either Medicaid or privately purchased insurance for $3,500 per month. Given our medical conditions Medicaid would have been a nightmare and we never would have been able to afford the private insurance even on our best day. Well, two weeks later, I was offered the position at Dickinson and our insurance plans rolled into the other. Pat and Sue, both who interviewed me and made the decision to hire me are two more of our Earth Angels. I never spoke of my illness and felt guilty as if I was selling them a faulty product. I was desperate and at the same time knew I could do the job. I later learned at some point they had already come to know our story. But professionally, it was never brought up until I, myself, brought it up months later as I was filled with tears. Love them both.
Being back at Dickinson fills me with memories of my childhood. I often feel as though I was never given a chance to mourn the loss of my Mother with everything that happened so quickly after she passed. When I walk around the school, I am flooded with memories of my youth which always leads me back to my Mom. I still feel her with me. Being there is helping me in so many ways through memories, so many kind coworkers, the work needed to occupy my mind, medical benefits, an income along with Summer respite to be with my family. Beyond lucky!
As you all know Sam has worked with his body his entire life. Unfortunately, he has permanent disabilities with both of this arms, wrists and hands. They will never be what they once were. He has limits as far as range of motion and rotation in his wrists. He is bone on bone in spots and has major loss of hand strength. He still holds all the knowledge of his trade but his physical abilities and endurance prohibit him from returning to work in the capacity that he once did while earning a living for our family. He had hope that he would be capable of making a complete come back. Coming to terms with his physical disabilities has been very difficult. He supported our family for so many years and as a man in that position mentally this has been a great challenge for him to accept. Recently, he finally came to terms that he needed to apply for permanent disability. A huge step for the direction of his life and all of ours. This is something that is in process.
(continued in next update on GFM)
On this Thanksgiving Day and everyday, we are so very grateful for all you have done for us. The impact you have made and continue to make in our lives cannot be put into words. Through these hard times, you provided us a sense of peace. We appreciate this day we have together and the ability to enjoy it.
Our warmest wishes for you and your families to have a wonderful Thanksgiving Day! The Lubys are thankful for each and every one of YOU!
Theresa, Sam, Grace, Peter & Claire
This is not easy for me to do. Pride gets in the way and I am truly sorry for having to ask this of you. Seeing that we already have been blessed by all of you with nearly $100,000 through GoFundMe is beyond words. With all that is going on in our world today, it makes me feel worse because there are so many people in need. Sam keeps mentioning to family and friends that we may need to send out an SOS and we have been encouraged to do so by many. The bottom line is, WE NEED HELP.
Through your love and support, we have never felt alone and it has proved that you have had our backs. Through the hurdles we have been dealt, one could easily have felt buried. Instead, you lifted our family up and continue to carry us in ways that you cannot imagine. Financially, you have allowed us to stay in our home since the accident, you have given us the ability to afford the health coverage we so desperately need along with the deductibles having been met for both 2016 and 2017, we have stayed afloat with our everyday bills, you have provided our children with the consistency that allowed their surroundings to remain as normal as they could possibly be. For all of this, we could never thank you all enough.
There was a time around November/December of 2016 where we thought we would be able to move on with our physical abilities as they were at the time. It was shortly thereafter that the non-epileptic seizures Sam was experiencing here and there began to rule our world. They became more frequent and are so extremely painful for Sam. After they occur, he is completely exhausted and it takes a while for him to feel as though he can function again.
There are no known triggers. Some of you have been witness to his seizures while we have been out and about. Many of you have stepped in and helped us when they have happened out at the kid’s events, social gatherings, wherever we may be. Thank you to those of you who have provided Sam with the best comfort and have not made him feel so embarrassed. You may see Sam around town and he will be his old self in character but it could all change within moments. Sam can feel when a spasm is coming on. He is given warning signs. He does not lose consciousness. When he is in full spasm his body will go into full convulsions.
We have seen so many doctors in the neurological field and have been told it is a form of a Post Traumatic Dystonia/Movement Disorder from trauma to his brain caused by the accident. At this time, we have no solid solution. Medications do not help him. Currently, we are going with the advice that he needs to try and retrain his brain to control the spasms through Cognitive Behavior Therapy. We have not been promised definitive results but Sam is willing to try anything with an open mind.
Three weeks ago, Sam had another surgery on his knee. He still needs to have surgery on his hip and the IVC filter removed from the double pulmonary embolism that occurred while in the hospital. He has been told to accept the abilities he currently has with his arms and hands. There is permanent damage that he needs to try to overcome.
In regards to my health situation, I will forever have stage 4 breast cancer. It was found in my collar bone, spine, ribs, thigh bones, lymphnodes, along with the two tumors in my right breast that remain there. I am on a first-treatment chemotherapy plan. I take two pills a day, iBrance and Letrizole, and receive an injection for my bones, Xchiva, once a month. The cost of the iBrance is astronomical. It is approximately $118,000 for an annual supply and the blood work run each month for my liver is extremely expensive as well. Something we would never be able to afford without our insurance plan. Thanks to you, we have been able to maintain that plan but are coming upon a situation where our finances will not allow us to afford even that and it truly scares me.
The medication, iBrance, effects my immune system. The cycle for iBrance is three weeks on and one week off. The week off is so that my white cells can rebuild. At the end of that week my average count is 1,300 at its highest. The average person’s normal count is between 10,000 and 15, 000. Despite this and other side effects, I am doing well with the treatment I am currently on. My PET scans have been showing improvement but I have been told eventually the cancer will become smart to the medication and begin to grow again. This is when my treatment will be changed. I hope and pray that it is not for some time but unfortunately one never knows with this horrible disease. I am told my stress levels need to remain low to maintain my health. I try and keep things light and take each day for what it is. Sometimes that is very difficult to do. Taking deep breaths, not looking too far into the future and forging ahead is how I keep going. I truly believe positivity is key.
Our kids are continuing nicely with their own responsibilities. Grace is in her Junior year of high school, on the varsity cheer team, taking drivers education and is working at McDonalds. Peter has started his freshman year of high school and is on the JV9 Football team. And Claire is in 5th grade in elementary school, she is involved in clubs, plays the cello and was assigned the roll of “Golde” in the play Fiddler on the Roof.
They each worry in their own ways and of course it brings added stress into our household but overall, they have adjusted well given our family situation. We are honest with them and speak openly with everything that is going on. It makes me sad they have to deal with all of this but I couldn’t be prouder of how strong they are. As much of the “normalcy” that they were accustomed to prior to all of this is so very important for them. It gives them a safety net to hang onto. And for much of this, we owe great thanks to you.
Sam is trying his very best to not let his physical disabilities get him down. He is doing whatever he can to get himself out of bed in the morning and keep himself busy, although he is in constant pain. Doctor and therapy appointments are still a continual necessity in our life right now.
I recently received my exam results for the Civil Service Clerk Typist test and I scored 100! I am trying to find employment with medical benefits. I have been answering the letters I receive from school districts. I have a plan that I am hoping will come into fruition. I am hoping to find a job that will allow me to dedicate myself 100% to that position along with the hours that will allow time for my doctor visits, while still remaining a presence in my kid’s everyday lives, something more important to me now than ever because of the cancer. I want to be there for every moment while I still can. So, I am working on that.
With all of this being said, we are desperately in need of financial help. Having already been blessed with the generosity of so many, this is so very difficult to ask. Right now, the light at the end of the tunnel feels so far off and we are scared. Any amount that you or someone you may know that has the ability to provide for us in this time of need, would lift us up in ways that you could never imagine. Each one of you are literally lifesavers and this is our SOS.
As always, please keep us in your prayers. I can feel us being watched over every day. Still feeling blessed.
That is such great news Theresa! Our continued thoughts and prayers are with you all.
Not a day has gone by without your family in our thoughts and prayers. Keeping the faith.