Journal entry by Whitney Tucker —
It's been 3 weeks since Daniel's first surgery, and about 6-7 weeks since we started on this cancer journey. Long story short---he had what we thought was a cyst come up on his forehead in maybe Feb, right at the top near his hairline. It wasn't too obvious to most people, but slowly it got bigger. By May we decided he needed to get it taken off (we honestly had no idea it would be cancer), went to a GP, who prescribed an antibiotic for 2 weeks and he came home. After two weeks, it was still the same, so he was referred to a plastic surgeon, who biopsied it. He had that appt on Friday, May 17th, and on Wed, May 22nd, our worlds were turned upside down when that plastic surgeon called him and said it was cancer, and it was a serious cancer---a sarcoma.
I will never forget hearing Daniel repeating what he said over the phone. My stomach just dropped. A sarcoma??? And we didn't know what kind of sarcoma until the following Tuesday, when we met with the cancer surgeon. It's an angiosarcoma. Well don't ever google your diagnosis. The prognosis isn't the best for this kind of cancer. It's aggressive, but most of all, it's kind of rare, so there aren't nearly the studies being done on it like there are for other kinds. Our surgeon has seen maybe 6 angiosarcomas on the head, maybe 6 throughout other parts of the body. And each area is different.
Here's where the tests began. He had a CT scan as well as an MRI done on his head and then we met again with the surgeon, the oncologist and radiation oncologist on June 6th and found out that it had not spread to any other organs, thank the Lord. The plan was to operate to take the tumor off his head and get "clear margins", which means the edges wouldn't have cancer---hopefully stopping it from spreading. He would need a skin graft on the wound, because the head doesn't have extra skin to pull across such a large wound---roughly 5 cm by 4 cm, and then the plan is to do radiation after it's healed enough. The first surgery was Friday, June 21st, and it went well, but they didn't get clear margins on one side, so they went in again the next Friday, June 28th, to take off more on his left side. He had a wound vac on his head during this time---basically the wound was open, but the sponge from the wound vac sat in the wound and it was covered with lots of gauze and tape and was protected. Same scenario again after the 2nd surgery, and that time we got clean margins on the edge, but were told they still had some cancer cells left in the deeper tissue (which isn't that deep because it's in the skin above his skulll). It was decided to go ahead and put a skin graft on as soon as possible, and Dr. Outlaw made the decision to "shave down the bone" on his skull where they think the cancer cells were, hopefully getting rid of them. They then put a piece of cow skin (yes, COW) on one side of his wound--probably about 1/3 of the wound, and then they took a piece of skin from his thigh for the other 2/3's.
The wound in not small, and comes down to within an inch of his eyebrows. The whole thing is about the shape of a large avacado. It was a little tough to look at in the beginning when it was open, but I've gotten used to it quickly as he's sensitive about it. He keeps talking about how disfigured he is, but I truly don't see it. Not just because he covers it up with bandages and a hat right now, but because I truly don't care. I want HIM to be here---and they can cut off the entire top of his head and I won't care. I hope I've conveyed that to him through all of this. He will probably always wear a hat around other people, and I know that makes him sad, but we're just blessed he's here, and if this is what it takes to get rid of this monster, then so be it.
The skin graft does seem to be taking hold nicely, which is very important. In the meantime, we've decided to try to go to an angiosarcoma specialist at MD Anderson, if we can get in and if insurance covers it. All of our doctors were really supportive in this, except for one, but that's ok. We are not unhappy with the plan we have at Mobile Infirmary---we'd just like to get the opinion of a doctor who has seen more than 5 cases of this in his entire career!!! I've joined an angiosarcoma group on FB, and more often than not, the patients and relatives of patients on this page are saying to see a specialist, so that's what we're doing. I never want us to wonder "what if we'd only....." I want us to just do it.
The most amazing thing throughout this entire process is our family and friends. The support we've had from the minute it started is amazing. From our church support and friends sitting with us at the hospital, the prayers, the texts, the food, to the cards and visits we've gotten so much support---and it's a humbling experience. I truly don't know how anyone goes through this without God. Toward the beginning, I felt so helpless and so scared, and I found some "plans" that focused on working through fear, and they really did help. Some verses were so timely and poignant to what we were experiencing that day, and that can only be God. Our hope is that Daniel has many, many years ahead of him, but whatever happens, it's in God's hands and we have to trust that he has a plan. Personally, I just hope it's the same as mine!! The kids have also been wonderful. Austin and Hannah are there for their Dad and Hunt and Kelsey are making sure I'm doing ok and of course checking on Daniel. They've been at surgeries with us, at the house with us hanging out and we couldn't do it without any of them. I hope I'm his rock, but the kids are mine.
The beautiful thing about Daniel is his sense of humor. He's always been the funniest guy in the room, and even when he's in pain or scared, he's still cracking jokes with the nurses and making everyone laugh. Sure, it's a coping mechanism, but it works. One nurse got in trouble for hanging out with us too long--not seriously, but it was funny. From cracking jokes about being handsome for 55 years and now giving the other guys a chance since he'll be scarred, to the many jokes we've made about the cow skin on his head. He was rubbing his head recently and I told him to stop---and he said "my cow is needing to be petted right now" to rubbing the spot and saying "there's a cow somewhere going, who's touching me???"...it's amazing, and it's why he has to stay around for as long as possible. We're still KICKING CANCER'S BUTT!!!!
I will never forget hearing Daniel repeating what he said over the phone. My stomach just dropped. A sarcoma??? And we didn't know what kind of sarcoma until the following Tuesday, when we met with the cancer surgeon. It's an angiosarcoma. Well don't ever google your diagnosis. The prognosis isn't the best for this kind of cancer. It's aggressive, but most of all, it's kind of rare, so there aren't nearly the studies being done on it like there are for other kinds. Our surgeon has seen maybe 6 angiosarcomas on the head, maybe 6 throughout other parts of the body. And each area is different.
Here's where the tests began. He had a CT scan as well as an MRI done on his head and then we met again with the surgeon, the oncologist and radiation oncologist on June 6th and found out that it had not spread to any other organs, thank the Lord. The plan was to operate to take the tumor off his head and get "clear margins", which means the edges wouldn't have cancer---hopefully stopping it from spreading. He would need a skin graft on the wound, because the head doesn't have extra skin to pull across such a large wound---roughly 5 cm by 4 cm, and then the plan is to do radiation after it's healed enough. The first surgery was Friday, June 21st, and it went well, but they didn't get clear margins on one side, so they went in again the next Friday, June 28th, to take off more on his left side. He had a wound vac on his head during this time---basically the wound was open, but the sponge from the wound vac sat in the wound and it was covered with lots of gauze and tape and was protected. Same scenario again after the 2nd surgery, and that time we got clean margins on the edge, but were told they still had some cancer cells left in the deeper tissue (which isn't that deep because it's in the skin above his skulll). It was decided to go ahead and put a skin graft on as soon as possible, and Dr. Outlaw made the decision to "shave down the bone" on his skull where they think the cancer cells were, hopefully getting rid of them. They then put a piece of cow skin (yes, COW) on one side of his wound--probably about 1/3 of the wound, and then they took a piece of skin from his thigh for the other 2/3's.
The wound in not small, and comes down to within an inch of his eyebrows. The whole thing is about the shape of a large avacado. It was a little tough to look at in the beginning when it was open, but I've gotten used to it quickly as he's sensitive about it. He keeps talking about how disfigured he is, but I truly don't see it. Not just because he covers it up with bandages and a hat right now, but because I truly don't care. I want HIM to be here---and they can cut off the entire top of his head and I won't care. I hope I've conveyed that to him through all of this. He will probably always wear a hat around other people, and I know that makes him sad, but we're just blessed he's here, and if this is what it takes to get rid of this monster, then so be it.
The skin graft does seem to be taking hold nicely, which is very important. In the meantime, we've decided to try to go to an angiosarcoma specialist at MD Anderson, if we can get in and if insurance covers it. All of our doctors were really supportive in this, except for one, but that's ok. We are not unhappy with the plan we have at Mobile Infirmary---we'd just like to get the opinion of a doctor who has seen more than 5 cases of this in his entire career!!! I've joined an angiosarcoma group on FB, and more often than not, the patients and relatives of patients on this page are saying to see a specialist, so that's what we're doing. I never want us to wonder "what if we'd only....." I want us to just do it.
The most amazing thing throughout this entire process is our family and friends. The support we've had from the minute it started is amazing. From our church support and friends sitting with us at the hospital, the prayers, the texts, the food, to the cards and visits we've gotten so much support---and it's a humbling experience. I truly don't know how anyone goes through this without God. Toward the beginning, I felt so helpless and so scared, and I found some "plans" that focused on working through fear, and they really did help. Some verses were so timely and poignant to what we were experiencing that day, and that can only be God. Our hope is that Daniel has many, many years ahead of him, but whatever happens, it's in God's hands and we have to trust that he has a plan. Personally, I just hope it's the same as mine!! The kids have also been wonderful. Austin and Hannah are there for their Dad and Hunt and Kelsey are making sure I'm doing ok and of course checking on Daniel. They've been at surgeries with us, at the house with us hanging out and we couldn't do it without any of them. I hope I'm his rock, but the kids are mine.
The beautiful thing about Daniel is his sense of humor. He's always been the funniest guy in the room, and even when he's in pain or scared, he's still cracking jokes with the nurses and making everyone laugh. Sure, it's a coping mechanism, but it works. One nurse got in trouble for hanging out with us too long--not seriously, but it was funny. From cracking jokes about being handsome for 55 years and now giving the other guys a chance since he'll be scarred, to the many jokes we've made about the cow skin on his head. He was rubbing his head recently and I told him to stop---and he said "my cow is needing to be petted right now" to rubbing the spot and saying "there's a cow somewhere going, who's touching me???"...it's amazing, and it's why he has to stay around for as long as possible. We're still KICKING CANCER'S BUTT!!!!
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