Dillon's Osteosarcoma is back
Donation protected
My name is Nicole Catania. I am creating this campaign for my dear friends Emmy and Dillon. The following will be in their own words. These are the two kindest, most compassionate and understanding humans I've ever had the pleasure of knowing. Please read their story. I hope you can find it in your hearts to donate or share to help these two wonderful people.
As many of you know, Dillon has been battling cancer since July 2018. His diagnosis was stage 2B Osteosarcoma of the left distal femur. After 3 surgeries and 8 months of chemo, we thought we were in the clear.
Unfortunately, on November 4, 2019, it was confirmed that Dillon’s cancer has recurred, now considered Stage 4 due to lung metastases. He will be restarting rigorous treatment immediately, and once the lungs are under control, he will undergo hip disarticulation surgery - full amputation of his left leg through the hip joint.
Dillon is the love of my life and the strongest person in the universe. I am so proud to stand beside him and be his companion and his caretaker as well as his wife. But the world isn’t as understanding as we wish it could be. The first round of this fight we did not reach out for help on this scale, but things have changed so much. Dillon and I must stick together, and we must ask for more support now that we are facing more severe issues and the costs that come with them: treatment not only at NYU now, but consults with Columbia University Hospital, which means even more travelling; less commonly approved chemotherapy drugs due to the first 2 tries not being effective; the rarest form of lower limb amputation needing to be performed; a custom made set of very uncommon prosthetics; and of course all the complications and bumps along the way.
Below, I have written out Dillon’s cancer story so far. Please read it and share if you can. Osteosarcoma is extremely rare, with only about 900 cases per year in the US. More people need to know about it, so more people can work on curing it.
We wholeheartedly appreciate any contribution or even just a share of our story. Thank you so much.
All our love,
Emmy & Dillon
Dillon’s Story
Around January of 2018, Dillon’s knee began to bother him. It wasn’t constant at first, and there was no swelling. We weren’t worried; he worked on his feet all day, and he’s always been a little more prone to tripping and twisting something or other.
▪️March 2018
The pain was not yet constant, but flaring up every time he was on his leg. We went to an urgent care walk-in, who told us to keep icing it and using Advil and Aleve, which we had been doing.
▪️May 2018
Dillon’s knee was constantly swollen, and he walked with a limp all the time. We went to the ER at St. Barnabas in Livingston, NJ, who took blood, did x-rays, and whose doctor spent less than a minute talking to us after 12 hours of being there to tell us that, “it’s muscular, ice and rest, along with losing weight will help.” Looking back, this didn’t sit well with us, but we trusted the ER team there and went home.
▪️June 2018
Dillon was referred to an orthopedist by his GP. We explained the story and the orthopedist was stumped, but not worried. He assured us that he believed the issue to be a deep tissue injury of some kind, and he was going to order an MRI to check. I remember him saying, “I’m going to put the reasoning for the MRI as ‘checking for malignant tissue,’ but that’s just to make sure insurance approves it.” The MRI and follow up were scheduled for August 2nd, because he was extremely booked, and not particularly worried.
▪️July 24, 2018
Dillon could no longer walk. He got out of bed with my help and hopped to the living room with me. He called his office and told them he couldn’t come in. I called the orthopedist and told them that we could not wait any longer for this scan. They accommodated us and about 2 hours later Dillon was having the first of what would be countless MRIs of his left leg done.
I knew something was wrong when they told us the orthopedist was making room to see us right away.
I knew something was even worse when I saw the MRI of his leg on the monitors in the examination room. Dillon and I had googled enough “leg MRI” images to know that this was not what they were supposed to look like.
The orthopedist came in, and he looked like he was about to cry. He’s a young guy, pretty recently finished with his fellowship, and now that I think about it, we were probably the first time he had to deliver this kind of news.
“I did not expect something like this at all. I am so sorry. We have to refer you to a specialist at a university hospital, because this is something a normal oncologist can’t do.” Oncologist. “This is a bone tumor.”
▪️July 25, 2018
Dillon, his mother, his mother’s boyfriend, my mother, and I, are sitting on the 10th floor of the NYU Perlmutter Cancer Center with Dr. Timothy Rapp, a highly accomplished oncologic orthopedic surgeon specializing in sarcoma. He has a calmness about him that makes us all feel better as he explains the next steps. A biopsy on Monday to confirm and stage the cancer. A PET scan on Tuesday to make sure there are no metastases. Meeting with the oncologist on Thursday to decide on the treatment. After that, a procedure to insert either a medi-port or a PICC line to receive chemotherapy. Chemotherapy. Surgery. More chemotherapy.
The biopsy goes smoothly. The PET scan goes smoothly. It’s high grade Osteosarcoma, also called osteogenic sarcoma. It’s stage 2B, meaning it’s highly aggressive but localized to the left distal femur. They approximate it to be about 16 cm already, fully encasing the bottom of his femur.
▪️August 2, 2018
We met with our first oncologist, who was great. He decided on a chemotherapy regimen called MAP that is standard for treating osteosarcoma. He told Dillon that we should consider freezing sperm before treatment began, as it can affect fertility. He sent us to Interventional Radiology on the same day to get a PICC line placed in his arm. We scheduled chemotherapy to begin in less than two weeks.
▪️August 6, 2018
Dillon and I got married.
▪️August 13, 2018
At first, chemo was, according to Dillon, “easier than expected.” It sucked, don’t get him wrong, but Dillon is the toughest person I’ve ever met, both mentally and physically. Even his amazing chemo nurses, Jane, Sarah, and Rob, notes that he was tolerating MAP better than any patient they had seen. The only time nausea got the better of him was on the very first day of chemo, and he says it wasn’t due to the drugs. We had gotten Thai food from down the street and he had a moment of, “this is real. I have cancer. I’m having drugs pumped through my body to kill it right now.” He didn’t throw up, but he says that even the smell of Pad Thai reminds him of that awful feeling, and he won’t go near it anymore.
Other than a few days that were worse than others, Dillon was extremely sturdy, and with the help of the standard anti-nausea meds, he was eating empanadas and playing Nintendo switch and just feeling more tired and weak than usual. I was there next to him during chemotherapy every day. We’d sit on his bed and play games, watch Twilight Zone, and talk about how awesome everything would be when this was done.
In October, he had completed 2/3 of the chemo, and began the last drug of the mix, called methotrexate. This one hit him like a ton of bricks and threw a wrench in the plans. It took 12 days to clear from his body, as opposed to the 4 it was supposed to, and left him with extreme mucositis, an inflammation of the soft membranes along the whole digestive tract, including the mouth. The pain was so much that he couldn’t talk, he couldn’t eat, he would cry because he was so hungry and in so much pain and there was so little we could do about it. The mucositis was the first time we really felt despair over the whole situation, but we got through it... praying that at least the methotrexate had tortured the tumor as much as it had tortured Dillon.
It hadn’t.
▪️November 5, 2018
We met with our new oncologist, Dr. Anna Pavlick, to see the results of the new scans we’d had after 3 cycles of MAP. The tumor was bigger; it had not responded to the chemo. Dr. Pavlick and Dr. Rapp are the most efficient human beings in the world, and they had him on the operating table that Thursday for the tumor resection.
▪️November 8, 2018
My mom, Dillon’s mom, and Dillon’s brother were all there with me. We got there at 10am for the surgery scheduled for 11am. It got pushed back until about 1pm, and Dillon was cranky because he was hungry.
I remember the nurse hugging me when they wheeled him into the OR. I remember that they had diet orange soda in the cafe on the 13th floor of the NYU Orthopedic Hospital. I remember seeing Dr. Rapp in the cafe around 5pm, eating dinner, and asking him, “aren’t you supposed to be inside my husband’s leg?” I remember his very kind and patient assurance that Dillon was doing fine, that he’d gotten the entire tumor out, and that they were waiting on the intra-op pathology report to make sure all the margins were clean so they could finish the operation.
10 hours after the first incision, we were the only ones left in the waiting room. Dr. Rapp came to see us with great news - clean margins, successful implementation of the knee replacement and femoral rod, and Dillon was in the recovery area. I asked him if he could tell me what the tumor looked like. To my surprise, he asked me if I wanted to see it, and we all crowded around as he showed us a photo of the tumor. It was the most fascinating, disgusting, insane thing I’ve ever seen, and I took a photo of his photo so I could show it to Dillon when he woke up.
Dillon was in the hospital for a week. They actually gave us a room with a Murphy bed, so I could stay with him the whole time. He worked with OT, PT, and the therapy bunny, Clovis.
▪️January 3, 2019
We resumed chemo with a new combination of meds. The pathology on the tumor came back with only 65% necrosis, meaning that only 2/3 of it had died - the MAP chemo regimen had not been effective. The new meds still included that difficult drug, methotrexate, and it got a lot worse this time. Mid-February 2019 saw Dillon hospitalized for nearly 2 weeks with a severe kidney injury from the methotrexate toxicity. Once his body finally cleared it, we eliminated that drug from the regimen and spent a month at home recovering, before going back at the chemo.
▪️April 18, 2019
Dillon’s last day of chemo. The scans were clear of cancer. We would return for scans every three months for a year, then every four months for a year, then biannually for three years. It seemed like a given - we knew, despite the 50% chance of recurrence with osteosarcoma, that he wouldn’t get it again.
▪️June 27, 2019
Dillon is on the operating table again. Not for recurrence, but for pain. When his tumor was removed, they had to remove about 2/3 of his femur that had been encased, 22cm, and give him a full knee replacement, as well as place a metal rod in the remainder of his femur to act as a prosthetic one. This rod had become loose within the small amount of femur he had left, and was moving around, causing extreme pain. They spent 4 hours removing the old rod and knee replacement and installing the new. Things were still looking up, and there was still no recurrence.
▪️October 17, 2019
For the third time, I sat in the waiting room of the NYU Orthopedic Hospital, obsessively staring at the 8 digit number on the “Op Status” screen that represented my husband. He had been having extreme swelling of the knee - it looked like a honeydew melon sized lump had risen. His surgeon had assessed it and found it to be a hematoma - a large collection of old blood that we believed to have started a few weeks after the June surgery, when Dillon slipped and fell at home and banged his knee on the ground. The surgeon drained over a liter of old blood from the mass over a few appointments, but eventually decided surgery to remove it was safer, and way less risk of infection. The surgery was intended to be outpatient, and only take about an hour.
It was two hours when we heard from the surgeon. He came to the waiting area to explain what was going on.
“We removed the hematoma, but he is still bleeding, and we don’t know why. It’s unlike any hematoma I’ve ever seen.”
I can’t really describe the terror of that moment. I knew something was wrong. I think I knew what it was, too, but I refused to acknowledge the possibility.
Dill spent about 4 hours in surgery before the bleeding stopped and they were able to close him up. They sent tissue from the leg and hematoma for pathology, and they let us go home the next day. Dillon was in very high spirits - “it finally feels like a knee!!! It’s not a swollen lump anymore!”
▪️November 5, 2019
We were supposed to get his next set of check up scans on Friday, November 1. To make sure he was still in remission. But on Tuesday, October 30, we got that dreaded call. The pathology was back, the cancer was back. Those check up scans were cancelled in favor of another PET scan to check for metastases, as recurrent osteosarcoma nearly always occurs in the lungs as well. And sure enough, 3 small spots lit up along with the entirety of his knee area. Tomorrow, we will go to have a medi-port inserted. Next week, we will start 3 cycles of a new treatment. Once the lungs are under control, Dillon will need to have hip disarticulation surgery - a complete amputation of the left leg through the hip socket. Then, he will need to do as many more rounds of chemo as he can tolerate to blast any “floaters” remaining in the lungs, or elsewhere, to smithereens. And he will. Survivors have done it before, and if anyone is a survivor, my husband Dillon is. He is a survivor.
As many of you know, Dillon has been battling cancer since July 2018. His diagnosis was stage 2B Osteosarcoma of the left distal femur. After 3 surgeries and 8 months of chemo, we thought we were in the clear.
Unfortunately, on November 4, 2019, it was confirmed that Dillon’s cancer has recurred, now considered Stage 4 due to lung metastases. He will be restarting rigorous treatment immediately, and once the lungs are under control, he will undergo hip disarticulation surgery - full amputation of his left leg through the hip joint.
Dillon is the love of my life and the strongest person in the universe. I am so proud to stand beside him and be his companion and his caretaker as well as his wife. But the world isn’t as understanding as we wish it could be. The first round of this fight we did not reach out for help on this scale, but things have changed so much. Dillon and I must stick together, and we must ask for more support now that we are facing more severe issues and the costs that come with them: treatment not only at NYU now, but consults with Columbia University Hospital, which means even more travelling; less commonly approved chemotherapy drugs due to the first 2 tries not being effective; the rarest form of lower limb amputation needing to be performed; a custom made set of very uncommon prosthetics; and of course all the complications and bumps along the way.
Below, I have written out Dillon’s cancer story so far. Please read it and share if you can. Osteosarcoma is extremely rare, with only about 900 cases per year in the US. More people need to know about it, so more people can work on curing it.
We wholeheartedly appreciate any contribution or even just a share of our story. Thank you so much.
All our love,
Emmy & Dillon
Dillon’s Story
Around January of 2018, Dillon’s knee began to bother him. It wasn’t constant at first, and there was no swelling. We weren’t worried; he worked on his feet all day, and he’s always been a little more prone to tripping and twisting something or other.
▪️March 2018
The pain was not yet constant, but flaring up every time he was on his leg. We went to an urgent care walk-in, who told us to keep icing it and using Advil and Aleve, which we had been doing.
▪️May 2018
Dillon’s knee was constantly swollen, and he walked with a limp all the time. We went to the ER at St. Barnabas in Livingston, NJ, who took blood, did x-rays, and whose doctor spent less than a minute talking to us after 12 hours of being there to tell us that, “it’s muscular, ice and rest, along with losing weight will help.” Looking back, this didn’t sit well with us, but we trusted the ER team there and went home.
▪️June 2018
Dillon was referred to an orthopedist by his GP. We explained the story and the orthopedist was stumped, but not worried. He assured us that he believed the issue to be a deep tissue injury of some kind, and he was going to order an MRI to check. I remember him saying, “I’m going to put the reasoning for the MRI as ‘checking for malignant tissue,’ but that’s just to make sure insurance approves it.” The MRI and follow up were scheduled for August 2nd, because he was extremely booked, and not particularly worried.
▪️July 24, 2018
Dillon could no longer walk. He got out of bed with my help and hopped to the living room with me. He called his office and told them he couldn’t come in. I called the orthopedist and told them that we could not wait any longer for this scan. They accommodated us and about 2 hours later Dillon was having the first of what would be countless MRIs of his left leg done.
I knew something was wrong when they told us the orthopedist was making room to see us right away.
I knew something was even worse when I saw the MRI of his leg on the monitors in the examination room. Dillon and I had googled enough “leg MRI” images to know that this was not what they were supposed to look like.
The orthopedist came in, and he looked like he was about to cry. He’s a young guy, pretty recently finished with his fellowship, and now that I think about it, we were probably the first time he had to deliver this kind of news.
“I did not expect something like this at all. I am so sorry. We have to refer you to a specialist at a university hospital, because this is something a normal oncologist can’t do.” Oncologist. “This is a bone tumor.”
▪️July 25, 2018
Dillon, his mother, his mother’s boyfriend, my mother, and I, are sitting on the 10th floor of the NYU Perlmutter Cancer Center with Dr. Timothy Rapp, a highly accomplished oncologic orthopedic surgeon specializing in sarcoma. He has a calmness about him that makes us all feel better as he explains the next steps. A biopsy on Monday to confirm and stage the cancer. A PET scan on Tuesday to make sure there are no metastases. Meeting with the oncologist on Thursday to decide on the treatment. After that, a procedure to insert either a medi-port or a PICC line to receive chemotherapy. Chemotherapy. Surgery. More chemotherapy.
The biopsy goes smoothly. The PET scan goes smoothly. It’s high grade Osteosarcoma, also called osteogenic sarcoma. It’s stage 2B, meaning it’s highly aggressive but localized to the left distal femur. They approximate it to be about 16 cm already, fully encasing the bottom of his femur.
▪️August 2, 2018
We met with our first oncologist, who was great. He decided on a chemotherapy regimen called MAP that is standard for treating osteosarcoma. He told Dillon that we should consider freezing sperm before treatment began, as it can affect fertility. He sent us to Interventional Radiology on the same day to get a PICC line placed in his arm. We scheduled chemotherapy to begin in less than two weeks.
▪️August 6, 2018
Dillon and I got married.
▪️August 13, 2018
At first, chemo was, according to Dillon, “easier than expected.” It sucked, don’t get him wrong, but Dillon is the toughest person I’ve ever met, both mentally and physically. Even his amazing chemo nurses, Jane, Sarah, and Rob, notes that he was tolerating MAP better than any patient they had seen. The only time nausea got the better of him was on the very first day of chemo, and he says it wasn’t due to the drugs. We had gotten Thai food from down the street and he had a moment of, “this is real. I have cancer. I’m having drugs pumped through my body to kill it right now.” He didn’t throw up, but he says that even the smell of Pad Thai reminds him of that awful feeling, and he won’t go near it anymore.
Other than a few days that were worse than others, Dillon was extremely sturdy, and with the help of the standard anti-nausea meds, he was eating empanadas and playing Nintendo switch and just feeling more tired and weak than usual. I was there next to him during chemotherapy every day. We’d sit on his bed and play games, watch Twilight Zone, and talk about how awesome everything would be when this was done.
In October, he had completed 2/3 of the chemo, and began the last drug of the mix, called methotrexate. This one hit him like a ton of bricks and threw a wrench in the plans. It took 12 days to clear from his body, as opposed to the 4 it was supposed to, and left him with extreme mucositis, an inflammation of the soft membranes along the whole digestive tract, including the mouth. The pain was so much that he couldn’t talk, he couldn’t eat, he would cry because he was so hungry and in so much pain and there was so little we could do about it. The mucositis was the first time we really felt despair over the whole situation, but we got through it... praying that at least the methotrexate had tortured the tumor as much as it had tortured Dillon.
It hadn’t.
▪️November 5, 2018
We met with our new oncologist, Dr. Anna Pavlick, to see the results of the new scans we’d had after 3 cycles of MAP. The tumor was bigger; it had not responded to the chemo. Dr. Pavlick and Dr. Rapp are the most efficient human beings in the world, and they had him on the operating table that Thursday for the tumor resection.
▪️November 8, 2018
My mom, Dillon’s mom, and Dillon’s brother were all there with me. We got there at 10am for the surgery scheduled for 11am. It got pushed back until about 1pm, and Dillon was cranky because he was hungry.
I remember the nurse hugging me when they wheeled him into the OR. I remember that they had diet orange soda in the cafe on the 13th floor of the NYU Orthopedic Hospital. I remember seeing Dr. Rapp in the cafe around 5pm, eating dinner, and asking him, “aren’t you supposed to be inside my husband’s leg?” I remember his very kind and patient assurance that Dillon was doing fine, that he’d gotten the entire tumor out, and that they were waiting on the intra-op pathology report to make sure all the margins were clean so they could finish the operation.
10 hours after the first incision, we were the only ones left in the waiting room. Dr. Rapp came to see us with great news - clean margins, successful implementation of the knee replacement and femoral rod, and Dillon was in the recovery area. I asked him if he could tell me what the tumor looked like. To my surprise, he asked me if I wanted to see it, and we all crowded around as he showed us a photo of the tumor. It was the most fascinating, disgusting, insane thing I’ve ever seen, and I took a photo of his photo so I could show it to Dillon when he woke up.
Dillon was in the hospital for a week. They actually gave us a room with a Murphy bed, so I could stay with him the whole time. He worked with OT, PT, and the therapy bunny, Clovis.
▪️January 3, 2019
We resumed chemo with a new combination of meds. The pathology on the tumor came back with only 65% necrosis, meaning that only 2/3 of it had died - the MAP chemo regimen had not been effective. The new meds still included that difficult drug, methotrexate, and it got a lot worse this time. Mid-February 2019 saw Dillon hospitalized for nearly 2 weeks with a severe kidney injury from the methotrexate toxicity. Once his body finally cleared it, we eliminated that drug from the regimen and spent a month at home recovering, before going back at the chemo.
▪️April 18, 2019
Dillon’s last day of chemo. The scans were clear of cancer. We would return for scans every three months for a year, then every four months for a year, then biannually for three years. It seemed like a given - we knew, despite the 50% chance of recurrence with osteosarcoma, that he wouldn’t get it again.
▪️June 27, 2019
Dillon is on the operating table again. Not for recurrence, but for pain. When his tumor was removed, they had to remove about 2/3 of his femur that had been encased, 22cm, and give him a full knee replacement, as well as place a metal rod in the remainder of his femur to act as a prosthetic one. This rod had become loose within the small amount of femur he had left, and was moving around, causing extreme pain. They spent 4 hours removing the old rod and knee replacement and installing the new. Things were still looking up, and there was still no recurrence.
▪️October 17, 2019
For the third time, I sat in the waiting room of the NYU Orthopedic Hospital, obsessively staring at the 8 digit number on the “Op Status” screen that represented my husband. He had been having extreme swelling of the knee - it looked like a honeydew melon sized lump had risen. His surgeon had assessed it and found it to be a hematoma - a large collection of old blood that we believed to have started a few weeks after the June surgery, when Dillon slipped and fell at home and banged his knee on the ground. The surgeon drained over a liter of old blood from the mass over a few appointments, but eventually decided surgery to remove it was safer, and way less risk of infection. The surgery was intended to be outpatient, and only take about an hour.
It was two hours when we heard from the surgeon. He came to the waiting area to explain what was going on.
“We removed the hematoma, but he is still bleeding, and we don’t know why. It’s unlike any hematoma I’ve ever seen.”
I can’t really describe the terror of that moment. I knew something was wrong. I think I knew what it was, too, but I refused to acknowledge the possibility.
Dill spent about 4 hours in surgery before the bleeding stopped and they were able to close him up. They sent tissue from the leg and hematoma for pathology, and they let us go home the next day. Dillon was in very high spirits - “it finally feels like a knee!!! It’s not a swollen lump anymore!”
▪️November 5, 2019
We were supposed to get his next set of check up scans on Friday, November 1. To make sure he was still in remission. But on Tuesday, October 30, we got that dreaded call. The pathology was back, the cancer was back. Those check up scans were cancelled in favor of another PET scan to check for metastases, as recurrent osteosarcoma nearly always occurs in the lungs as well. And sure enough, 3 small spots lit up along with the entirety of his knee area. Tomorrow, we will go to have a medi-port inserted. Next week, we will start 3 cycles of a new treatment. Once the lungs are under control, Dillon will need to have hip disarticulation surgery - a complete amputation of the left leg through the hip socket. Then, he will need to do as many more rounds of chemo as he can tolerate to blast any “floaters” remaining in the lungs, or elsewhere, to smithereens. And he will. Survivors have done it before, and if anyone is a survivor, my husband Dillon is. He is a survivor.
Organizer and beneficiary
Nicole Catania
Organizer
Hillsborough Township, NJ
Emmy Anne
Beneficiary