HLH Awareness for Gary Connor
Donation protected
We are starting this GoFundMe page to raise awareness on HLH and to help Gary Connor through this difficult journey he is still currently battling.
On October 14th 2018, Gary woke up with flu-like symptoms (High-Grade Fevers of 103, lack of appetite, body aches, chills, and overall just fatigued). After 2 days of these symptoms he went to a local urgent care center, where he was told that he needed to go to the Emergency Room. His urine was a very dark brown color which is a sign that he was severely dehydrated. His girlfriend, Jessica, rushed him to a Community Hospital in Toms River, both thinking that he just needed to be hooked up to an IV pole for some fluids and maybe some antibiotics. That day was the day that changed his life forever. They first tested him for the Flu and Strep, both of those results were negative. Then they ran some more blood work that came back and showed very elevated numbers which implied that he was fighting a “very serious infection” as the doctor put it. They admitted him that day and said that he should expect to be there for at least 3 days. Gary being the hard worker that he has always been, wasn’t very pleased to hear that he would be missing that many days of work. After 4 days of an extensive number of tests that were done, all with negative results, and a decline in his overall health resulting in him having to be intubated, the family decided it would be best to transfer him to Robert Wood Johnson Hospital in New Brunswick, NJ.
When he arrived at RWJ on the 21st, the doctors continued to run more tests including a Lumbar puncture in hopes that it would come back with something that would tell us what was going on. Nothing remarkable was ever shown. He experienced multiple organ failure which led him to be put on dialysis for his Kidneys along with a bunch of other medications to help with his other organs. He broke out in rashes all over his body, was still experiencing high-grade fevers, and now was sedated in order to prevent his organs from over working themselves. The family worried about his mental health being that he was extremely sedated. Every day they gave Gary a “Holiday” in which they would lower the sedation to wake him up for 15 mins. In that small amount of time, Gary’s family and Jess, would talk to him and tell him to stay strong and to keep fighting. The kids missed him and needed him. On Oct. 24th, they removed the breathing tube, but 6 hours later, they had to reintubate him. A few days later, the doctors finally decided to do a bone marrow on him. They quickly looked at the blood under a microscope and saw the Microphages (type of cells in your body) eating the other cells indicating that he was suffering from what the doctors believed, was a rare disease called HLH. Doctors said they were 50% sure that it was HLH but had to wait for the testing results to be conclusive. They recommended that we should start the protocol (treatment) for it which is a chemo called Etoposide, and a high dose steroid which he was already on. After much consideration, the family decided to go ahead with that treatment in hopes that this would help save Gary. On the 31st, we received the results that it was indeed HLH. Therefore, Gary needed to continue with Chemo.
On Nov 3rd, they removed the breathing tube and just a few days later moved us out of the ICU onto the oncology floor. Things started to look up from there, but he had days in between that would make you question it. He experienced a mini stroke, multiple mucus plugs in his lungs, extremely high blood pressure, a high heartrate, multiple blood transfusions, and suffered from multiple infections in his lungs and blood stream. We were all thankful that he was still with us and that we could spend time with him on Thanksgiving. We were hoping that maybe he would be back home in time for Christmas but on Dec 3rd, he was reintubated and taken back down to the ICU. He went through multiple organ failure for a second time, fluid buildup around his lungs, and continued to suffer from multiple infections all due to him not having any white blood cells from having to undergo chemo treatments. Doctors weren’t hopeful anymore but that didn’t stop us from fighting. Gary was in desperate need of platelets, so we started a blood drive to help him out. Doctors decided that it was best to hold off on chemo because his body couldn’t handle any more.
A few weeks later, he did what doctors weren’t expecting and his numbers started to get better, he started developing more white blood cells and platelets that he desperately needed. HE WAS NOT GIVING UP!!! On Jan 1st 2019, they removed the breathing, feeding, and chest tubes. They moved him up to the oncology floor just a few days later where he currently still is to this day. He has lost all the muscles in his body, so he receives Physical Therapy every day to relearn and regain those muscles. Doctors did more testing to find out more about his HLH condition which showed that he didn’t have cancerous cells and that this was considered “Secondary HLH”. The next steps for Gary are to figure out what caused his HLH to flare, continue receiving intensive amounts of PT to help him learn how to sit and walk again, and practice daily exercises to help him learn how to eat again.
Gary is one of the most hard-working people you will ever meet. All his life, it revolved around working and working hard to provide for his family in order to give them the best life possible. He is a loving father to two children; Alexis Connor, who is 18 years old and Ryan Connor, who is 15 years old. Gary is the children’s main provider so with him being away for the last 4 months, they had to adjust to the changes that were happening. It is so sad to say that Gary spent and missed out on several holidays with the kids and family, along with missing most of his daughter’s final year and his son’s first year of high school. As his daughter and family, we miss having the “life of the party” around. It’s too quiet and we need him back. We are asking for your donations to help with his medical bills he is receiving and to help him so that he can continue getting the care he so desperately needs. Any donations are very much appreciated. Lastly, a special thank you and shout out to his girlfriend, Jessica Soares, for being by Gary’s side through this rough journey and never leaving his side. We appreciate and love you so much. We love you Dad – Keep fighting and pushing for us – YOU GOT THIS!!
Many doctors have never experienced having a patient with HLH so please make yourselves aware of this disease and the treatment for it, links are below:
https://www.cincinnatichildrens.org/service/h/hlh/about
https://hemonc.org/wiki/Hemophagocytic_lymphohistiocytosis
https://www.chop.edu/conditions-diseases/hemophagocytic-lymphohistiocytosis-hlh
On October 14th 2018, Gary woke up with flu-like symptoms (High-Grade Fevers of 103, lack of appetite, body aches, chills, and overall just fatigued). After 2 days of these symptoms he went to a local urgent care center, where he was told that he needed to go to the Emergency Room. His urine was a very dark brown color which is a sign that he was severely dehydrated. His girlfriend, Jessica, rushed him to a Community Hospital in Toms River, both thinking that he just needed to be hooked up to an IV pole for some fluids and maybe some antibiotics. That day was the day that changed his life forever. They first tested him for the Flu and Strep, both of those results were negative. Then they ran some more blood work that came back and showed very elevated numbers which implied that he was fighting a “very serious infection” as the doctor put it. They admitted him that day and said that he should expect to be there for at least 3 days. Gary being the hard worker that he has always been, wasn’t very pleased to hear that he would be missing that many days of work. After 4 days of an extensive number of tests that were done, all with negative results, and a decline in his overall health resulting in him having to be intubated, the family decided it would be best to transfer him to Robert Wood Johnson Hospital in New Brunswick, NJ.
When he arrived at RWJ on the 21st, the doctors continued to run more tests including a Lumbar puncture in hopes that it would come back with something that would tell us what was going on. Nothing remarkable was ever shown. He experienced multiple organ failure which led him to be put on dialysis for his Kidneys along with a bunch of other medications to help with his other organs. He broke out in rashes all over his body, was still experiencing high-grade fevers, and now was sedated in order to prevent his organs from over working themselves. The family worried about his mental health being that he was extremely sedated. Every day they gave Gary a “Holiday” in which they would lower the sedation to wake him up for 15 mins. In that small amount of time, Gary’s family and Jess, would talk to him and tell him to stay strong and to keep fighting. The kids missed him and needed him. On Oct. 24th, they removed the breathing tube, but 6 hours later, they had to reintubate him. A few days later, the doctors finally decided to do a bone marrow on him. They quickly looked at the blood under a microscope and saw the Microphages (type of cells in your body) eating the other cells indicating that he was suffering from what the doctors believed, was a rare disease called HLH. Doctors said they were 50% sure that it was HLH but had to wait for the testing results to be conclusive. They recommended that we should start the protocol (treatment) for it which is a chemo called Etoposide, and a high dose steroid which he was already on. After much consideration, the family decided to go ahead with that treatment in hopes that this would help save Gary. On the 31st, we received the results that it was indeed HLH. Therefore, Gary needed to continue with Chemo.
On Nov 3rd, they removed the breathing tube and just a few days later moved us out of the ICU onto the oncology floor. Things started to look up from there, but he had days in between that would make you question it. He experienced a mini stroke, multiple mucus plugs in his lungs, extremely high blood pressure, a high heartrate, multiple blood transfusions, and suffered from multiple infections in his lungs and blood stream. We were all thankful that he was still with us and that we could spend time with him on Thanksgiving. We were hoping that maybe he would be back home in time for Christmas but on Dec 3rd, he was reintubated and taken back down to the ICU. He went through multiple organ failure for a second time, fluid buildup around his lungs, and continued to suffer from multiple infections all due to him not having any white blood cells from having to undergo chemo treatments. Doctors weren’t hopeful anymore but that didn’t stop us from fighting. Gary was in desperate need of platelets, so we started a blood drive to help him out. Doctors decided that it was best to hold off on chemo because his body couldn’t handle any more.
A few weeks later, he did what doctors weren’t expecting and his numbers started to get better, he started developing more white blood cells and platelets that he desperately needed. HE WAS NOT GIVING UP!!! On Jan 1st 2019, they removed the breathing, feeding, and chest tubes. They moved him up to the oncology floor just a few days later where he currently still is to this day. He has lost all the muscles in his body, so he receives Physical Therapy every day to relearn and regain those muscles. Doctors did more testing to find out more about his HLH condition which showed that he didn’t have cancerous cells and that this was considered “Secondary HLH”. The next steps for Gary are to figure out what caused his HLH to flare, continue receiving intensive amounts of PT to help him learn how to sit and walk again, and practice daily exercises to help him learn how to eat again.
Gary is one of the most hard-working people you will ever meet. All his life, it revolved around working and working hard to provide for his family in order to give them the best life possible. He is a loving father to two children; Alexis Connor, who is 18 years old and Ryan Connor, who is 15 years old. Gary is the children’s main provider so with him being away for the last 4 months, they had to adjust to the changes that were happening. It is so sad to say that Gary spent and missed out on several holidays with the kids and family, along with missing most of his daughter’s final year and his son’s first year of high school. As his daughter and family, we miss having the “life of the party” around. It’s too quiet and we need him back. We are asking for your donations to help with his medical bills he is receiving and to help him so that he can continue getting the care he so desperately needs. Any donations are very much appreciated. Lastly, a special thank you and shout out to his girlfriend, Jessica Soares, for being by Gary’s side through this rough journey and never leaving his side. We appreciate and love you so much. We love you Dad – Keep fighting and pushing for us – YOU GOT THIS!!
Many doctors have never experienced having a patient with HLH so please make yourselves aware of this disease and the treatment for it, links are below:
https://www.cincinnatichildrens.org/service/h/hlh/about
https://hemonc.org/wiki/Hemophagocytic_lymphohistiocytosis
https://www.chop.edu/conditions-diseases/hemophagocytic-lymphohistiocytosis-hlh
Organizer and beneficiary
Alexis Connor
Organizer
Berkeley Township, NJ
Jessica Soares
Beneficiary