December 10, 2023
Ten years ago, Keith Crevatas was a healthy 29 year old man whose life was rapidly changing; he and his family could never have prepared for the roller coaster of circumstances that led up to the present day.
Keith and I met while I was a teacher working with his cousin that introduced us, and quickly fell in love and started planning their life together. We got married, and with baby Fiona on the way, he decided to take the test for NYC court officer. Although it took 2 years after taking the test to be called for the job, he worked hard, taking an office job and bartending in the meantime as I tutored. When I became pregnant with our second child, Avery, we to move from our small apartment in Woodside, Queens, into my mother’s childhood home in Elmont, Long Island, New York.
Once Keith got the acceptance letter to report for the job as a NY court officer, everyone was relieved and excited. He passed his physical exam with flying colors. Our family was on our way to a bit of normalcy, with a steady paycheck and a decent schedule for the family.
Being as we both grew up with several siblings we decided to try for a third child. We were blessed with baby girl Penelope (“Penny”) Shea. Penny was born during the pandemic, and has been a very special addition to the family. Ironically, neither of us were ever stressed with germs or scared to let someone hold her. Coming from a very tight knit extended family, I’ve never been that type of mom. Both of our families are large, and there are always many people around.
Keith’s initial job assignment as a NYC court officer was to Bronx Criminal Court. He was working three days a week. The courts were slow because most of the hearings were virtual. In February 2021, the courts fully re-opened. This was when Penny was about six months old.
For the first few days after re-opening the courts, Keith didn’t feel very well, but he went into work anyway since they just fully opened and he didn’t want to call out sick. He came home with a fever and was just not himself. He took multiple COVID tests both at home and at Urgent Care, but none came back positive.
Keith got worse the next day but still went to work again instead of calling out because he was still a fairly new employee. At work he kept feeling awful. He called me in the afternoon saying his supervisor was sending him to an Urgent Care center because of his 103 degree fever. I was worried because I didn’t approve of him going to work in in the first place. Again, more COVID testing, and he still continued to test negative. He left Urgent Care without a definitive diagnosis.
At home, he was in such agony, he could not wait for me to make arrangements to take him, so he drove himself to the Emergency Room at Winthrop Hospital in Mineola, NY. He somehow suspected he may have a kidney stone. After arriving and drawing blood, the nurses put Hazmat suits on and quarantined him in a room. His blood count numbers were alarmingly low. At some point he was transferred to New York City’s NYU Langone Hospital.
Through much testing and more bloodwork, the doctors at NYU Langone concluded he was not producing any white blood cells – they began to mention bone marrow transplant. As these findings were a shock to all of us, we began to prepare ourselves the best we could for a potentially long wait. Though generous family members and friends had volunteered to donate, no one was a suitable match. The doctors recommended going through the World Donor Bank, and eventually we got the best match. On 10/21/2021, Keith received the donation flown in from London, England. We thought that this would be the answer to our prayers, but unfortunately it wasn’t.
For the next two years Keith dealt with two years of ups and downs, including low platelets, and still low blood counts. In spite of being exhausted, he made every attempt to stay involved with the family, from routine activities with the children to planning vacations whenever he mustered up enough energy. He wanted to be there for his family in spite of his debilitating condition.
In the beginning of 2023, the doctors had felt they tried everything to bring his numbers up, but it just wasn’t happening. They decided to perform surgery to remove his spleen in order to increase his platelet count. Initially it was successful, his numbers soared for the better, and it seemed like it was the best decision. Keith’s hematologist, who had been closely monitoring him for years, said although it required a high dose of steroids, it was clearly working in Keith’s favor. Eventually they took him off the steroids which proved to be done prematurely.
Several weeks later Keith began suffering from weakened joints and extreme fatigue. His body was atrophying. I was sure it was due to withdrawal from the steroids. They ignored it for a week, and Keith toughed it out as usual. Then he went to get out of bed one day and fell flat on the floor. Little Penny came to tell her me that Daddy fell out of bed. With me not able to lift him, it was both humiliating and scary for him, and he was refusing to go to the hospital.
We finally convinced Keith that he needed to go to the hospital. When we called Dr. Haye’s team, the nurse was stern and her exact words were “A forty year old man should be able to walk, you need to get him in here”. Keith was still in denial and wanted no part of the hospital, but thankfully his brothers-in-law came and helped force him up and into the car. Once at the hospital, we learned Keith had a lesion in his spine which was becoming more inflamed as time went on.
Keith was admitted into the Kimmel Rehab Pavilion in NYC on 07/01/2023. Keith had physical therapy (P.T.) & occupational therapy (O.T.) regularly, as well as consultations with dieticians, social workers, and everyone else you can imagine. He underwent constant vitals, finger pricks, changing of diapers, sugar pricks, without much time for rest. His time at Kimmel came to an end and it was hard figuring out where he would go next. He was transferred to an acute neuro facility in New York City called RUSK, with 3 hours of P.T. and O.T., and a team constantly challenging him, to which he was responding. Keith changed his diet, was working out non-stop, and didn’t even want visitors, as he was working on himself, and that meant no distractions from his perspective.
Unfortunately insurance wouldn’t allow for Keith to remain there, so they had to look for a sub-acute facility.
At first I was thinking we could have Keith somewhere closer to home, as the trips into the city every day were wearing on myself and my Mom, who is picking up the slack watching the children while I’m traveling into New York City to visit my husband. Between the midtown tunnel traffic, the tolls, paying for parking, getting the car booted, and the countless tickets, it was extremely burdensome.
It was devastating when insurance denied him acute care, and then we were back at square one with time running out to get him out of RUSK. It was highly distressing and upsetting. Thankfully RUSK said they would keep him for a few more days before discharge, until a plan could be put into place.
We found Momentum in East Islip, Long Island. It was the last hope, so we made an appointment. Keith’s records are difficult to understand even for trained doctors. Both the interviewer and the doctor were amazing, and they asked the right questions and gave a feeling that Keith would get good care there. They read Keith’s case and understood how difficult it could be going forward. When you don’t have a clear diagnosis, you can’t really have a treatment plan, let alone a prognosis. I legitimately cried to them telling our story, and was grateful that they accepted him.
We are still of the belief that Keith would benefit most from aggressive P.T. and O.T. in an acute rehab facility, but insurance is resisting that by covering only sub-acute facilities. The good news is, as long as Keith and his team believe he is improving and they’re continuing to push him in the right direction, he can stay positive and remain in as good a frame of mind as possible under the circumstances.
It’s been quite a bizarre roller coaster of symptoms, which has generated a great deal of questions, including – “how did he get this lesion on his spine?” After 27 tests for anything and everything one can think of, it all came back negative. All we know is it’s an infection that they can’t diagnose, and it lodged in his spine, resulting in partial paralysis and his inability to walk.
Preparing the house comes with a lot of work and upheaval. The first question was – “is he not coming home walking?” The response is that it could take three months, or it could be three years. It’s very stressful because insurance doesn’t cover costs for any of this, and the bathroom entrance way is too small for any wheelchair. We have been getting price quotes, and more than anything, all we want is to have our husband/daddy back home. We miss him so much and it has been extremely tough for me to be a mom and dad all in one. Everyone wants him to come home, but more than anything they want him to be able to walk through the door. We all want Keith back the way he was.
Both of us can’t express how grateful and thankful we are for the nurses and the Hematology team that worked with us since the beginning at NYU. It has been an exhausting month of driving, visitors, fast food, and running around with minimal sleep. With a family of five, including three kids under 9 years old, the trips to the city were nearly killing me. My mom has been a strong source of support as she lives with us, and along with the extended family they have all picked up the slack and tried to fill in whenever they were needed. It would help Keith to be with his family, but the last thing he would want is to be helpless and a burden on us. He is a very proud man. Every day he gets stronger and stronger and it truly is a miracle he has made it this far. Because SSDI is not enough to support a family of five and continue physical therapy, we are asking for your help and thank you for continuing to support him on his journey. God bless you all
