So here it goes...
In September 2013 my dad was diagnosed with Dedifferentiated Chondrosarcoma, a cartilage based bone cancer.
The August before my family and I were out dancing and singing along with my cousin-in-law's amazing band at an awesome bar/restaurant near the shore. The next day my dad complained about a pain in his hip. That was the last time my dad ever went out to a restaurant. The last time he ever danced. The last time he felt happy and healthy and like himself.
At the time of the first scan my mom and dad were told, "Oh it is probably nothing." A few more scans and weeks later we were informed of my dad's cancer diagnoses. My brother decided to take matters into his own hands to learn more about my dad's very rare cancer. One day my brother Stephen called me, mom and my sister into his bedroom to show us what he had found:
Symptoms: most are painful.
Treatment: Wide resection. Chemotherapy and radiation therapy in select cases.
Prognosis: Poor. Five-year survival is from 0-20% approximately.
Our first plan of action was an eight hour surgery to remove my dad's right hip and pelvis (where the tumors were living and feeding). Our second plan of action. Getting through the rest together.
All of us living at home, myself, my brave mother, my incredible brother, my tougher than me little sister and all of our significant others from time to time living in the same house to help and support my dad and one another was a beautiful support system most families would have never been able to dream of. Taking one day at a time and excepting things for what they were was our system.
Living without a hip and the ability to walk on his own was a crushing blow to my former athletic and very independent father. After his initial diagnosis dad was never the same mentally. After that surgery, he was never the same again physically. After a suicide attempt from my dad in May he spent several days in the hospital as the doctors tried to flush his body of the fentanyl my father tried to overdose on.
June 26th, 2014- Dad's tumors were back and were, as the doctor called them, "sprinkled" throughout the incision sight. An incision sight large enough to look like a shark bite. My dad's options at this point: We complete a full amputation of the right leg and hip from the belly button down. With the amputation, it's a 70% chance of the tumors coming back in the left leg and my dad dieing anyway. If my dad had any life ahead of him, he wanted it to be at least a life worth some quality. So, we all decided as a family to forego the amputation.
After everything unfortunately there was no option of quality of life for my dad.
As the days, weeks and months moved on my dad's health started to decrease. It wasn't until November when I, myself, physically saw my dad dieing. Everyone else in my house saw it all along. I don't think my brain ever let me until his body started to shut down and his mind started to go.
December 11th, 2014- We had to call Samaritan Hospice to come pick my dad up. Despite his extremely high dose of pain meds he was still in so much pain. He wasn't acting like himself either. We all sat in the room, my mom pack him a bag and we waited for the ambulance to get there. The Emts brought my dad down the stairs and he sat in from of the door as the guys got the ambulance ready. My dad said, "Let me get a kiss from my girls." Erin and I gave him a hug and a kiss. He told us he loved us and we told him we loved him back. There was a part of me that knew that was going to be the last time Dad was home. There was no part of me that thought those would be the last words I would ever hear from my dad.
Once my dad arrived at the beautiful Samaratin Hopsice Care Hospital in Mount Holly the nurses started to make him comfortable. Blankets, family all around, whatever my dad wanted or needed. I knew he was in good hands.
December 13th, 2014- I was at my boyfriend Kenny's house and we were getting ready to leave for New York City with his family. I received a phone call from my brother. "Megs, if you want to have one more lucid conversation with Dad, you better come to the hospital." Kenny and I drove to the hospital to see my dad. We walked into the beautiful home like hospital and saw all of my dad's family and best friends sitting in the living room. I immediately walked right into my dad's room and he was sitting up and talking with some family. I interrupted to say hello to my dad and gave him a big hug and kiss. He was talking and making everyone laugh. I left the room very angry because to me and my brain, he was "fine". Sitting up, talking with family, laughing, he was comfy. I didn't understand why he was there. The idea that my dad was going to die there was not on my mind for whatever reason that day. Until, I stopped being ignorant and went back in. I wanted to give him another kiss. I told him I loved him and he said to me, "I love you too Megs. Hey, I'm gonna try and go to the bathroom and when I'm done I'm gonna see how I feel and I'm gonna come downstairs." I then knew my dad was going to die in that hospital. That room. That bed. That he was not coming home. That he was already gone. I kissed him on the cheek and walked out of the room feeling like someone punched me in the chest and put a pillowcase over my head.
You see, he thought he was home. That is what he would say to me and us everyday! He thought he was at home and he actually thought he was going to get up and go to the bathroom (with a catheter because his bowels were failing) and he was going to use his walker to get out of bed, his chair lift to get downstairs and his crutches to get into the living room to lay in his "downstairs" hospital bed in the living room to watch Modern Family with us. Because that's what he did when he could.
The next day the nurses asked us and we gave permission for them to start the sedation process necessary for my dad's body to be at peace so it could do what it was trying to do. Every hour the meds were raised and each day he got sleepier and sleepier. As my mom and I were sitting next to his bed just watching him sleep and listening to him breath my mom said to me, "You know Megs. There is a very good chance that Dad is going to pass on your birthday." My 25th birthday was on Thursday, December 18th. The truth was that had already crossed my mind. The main reason was because my grandma, my mom's mom, had died last year from ovarian cancer and from the chemo on my 24th birthday while we were visiting my dad in the hospital. I told her that I was aware of the chance.
My dad's wonderful nurse Amy began to tell us all that it was important for all of us to start having alone time with dad for us to say our goodbyes. She said that hearing was the last sense to go. So, we believed her.
December 17th, 2014- I woke up with what I call "word vomit". I immediately grabbed my journal sitting next to my bed and starting writing a poem for my dad. I arrived at the hospital with my poem and sat in with my dad for awhile and while waiting for the very rare breaths I would read it to him. My wonderful boyfriend, my mom, my mommom and I were at the hopsital until about 9:30pm. I just didn't feel right about leaving. My mom and mommom suggested I go home to rest. I needed to see him one more time and read the poem just one more time to him.
12. 17. 14
Dad’s Poem
If today is the day, then that is okay
Follow your beating heart
It has lead you to an adventurous life
To make an amazing family with your beautiful wife
From what I have seen and for whom I have met
I’m sure they would say the same
“Follow that heart of yours, weak or strong, we’re going to be alright.”
If your heart is growing weak
And your breath is becoming short
It’s okay to make that decision,
That commitment is a tough one but we trust in your choice
If today is the day you decide to leave
Please know what your leaving behind
A group of people who love you so much
Your family, your friends, your acquaintances, all people terrible at saying goodbyes
Follow that light we envy
If that is what your heart needs
You have already given so much to so many
We understand that it is time to leave
Your presence, your willingness
To help anyone in need
Is something we will carry forever
Memories, laughs, hugs and kisses, we will remember to try and make things better
Please, don’t be sad or hurt another minute Daddy
Your fight with cancer is almost over
However, it is clear to see that it is the battle you have won
By the legacy you are leaving behind for everyone
We are proud to be your family
To have known such an inspiring man
We will carry you with us
To graduations, weddings, everything important to us
We are so proud to be yours, to have loved you, to have known you
It’s okay if you must go
We will love you for the rest of our lives
Just like you have done so
Daddy, I can’t wait to see you in my dreams
Forever and always I know you’ll be with me
Helping me to believe
That missing you, isn’t as hard as it seems
In September 2013 my dad was diagnosed with Dedifferentiated Chondrosarcoma, a cartilage based bone cancer.
The August before my family and I were out dancing and singing along with my cousin-in-law's amazing band at an awesome bar/restaurant near the shore. The next day my dad complained about a pain in his hip. That was the last time my dad ever went out to a restaurant. The last time he ever danced. The last time he felt happy and healthy and like himself.
At the time of the first scan my mom and dad were told, "Oh it is probably nothing." A few more scans and weeks later we were informed of my dad's cancer diagnoses. My brother decided to take matters into his own hands to learn more about my dad's very rare cancer. One day my brother Stephen called me, mom and my sister into his bedroom to show us what he had found:
Symptoms: most are painful.
Treatment: Wide resection. Chemotherapy and radiation therapy in select cases.
Prognosis: Poor. Five-year survival is from 0-20% approximately.
Our first plan of action was an eight hour surgery to remove my dad's right hip and pelvis (where the tumors were living and feeding). Our second plan of action. Getting through the rest together.
All of us living at home, myself, my brave mother, my incredible brother, my tougher than me little sister and all of our significant others from time to time living in the same house to help and support my dad and one another was a beautiful support system most families would have never been able to dream of. Taking one day at a time and excepting things for what they were was our system.
Living without a hip and the ability to walk on his own was a crushing blow to my former athletic and very independent father. After his initial diagnosis dad was never the same mentally. After that surgery, he was never the same again physically. After a suicide attempt from my dad in May he spent several days in the hospital as the doctors tried to flush his body of the fentanyl my father tried to overdose on.
June 26th, 2014- Dad's tumors were back and were, as the doctor called them, "sprinkled" throughout the incision sight. An incision sight large enough to look like a shark bite. My dad's options at this point: We complete a full amputation of the right leg and hip from the belly button down. With the amputation, it's a 70% chance of the tumors coming back in the left leg and my dad dieing anyway. If my dad had any life ahead of him, he wanted it to be at least a life worth some quality. So, we all decided as a family to forego the amputation.
After everything unfortunately there was no option of quality of life for my dad.
As the days, weeks and months moved on my dad's health started to decrease. It wasn't until November when I, myself, physically saw my dad dieing. Everyone else in my house saw it all along. I don't think my brain ever let me until his body started to shut down and his mind started to go.
December 11th, 2014- We had to call Samaritan Hospice to come pick my dad up. Despite his extremely high dose of pain meds he was still in so much pain. He wasn't acting like himself either. We all sat in the room, my mom pack him a bag and we waited for the ambulance to get there. The Emts brought my dad down the stairs and he sat in from of the door as the guys got the ambulance ready. My dad said, "Let me get a kiss from my girls." Erin and I gave him a hug and a kiss. He told us he loved us and we told him we loved him back. There was a part of me that knew that was going to be the last time Dad was home. There was no part of me that thought those would be the last words I would ever hear from my dad.
Once my dad arrived at the beautiful Samaratin Hopsice Care Hospital in Mount Holly the nurses started to make him comfortable. Blankets, family all around, whatever my dad wanted or needed. I knew he was in good hands.
December 13th, 2014- I was at my boyfriend Kenny's house and we were getting ready to leave for New York City with his family. I received a phone call from my brother. "Megs, if you want to have one more lucid conversation with Dad, you better come to the hospital." Kenny and I drove to the hospital to see my dad. We walked into the beautiful home like hospital and saw all of my dad's family and best friends sitting in the living room. I immediately walked right into my dad's room and he was sitting up and talking with some family. I interrupted to say hello to my dad and gave him a big hug and kiss. He was talking and making everyone laugh. I left the room very angry because to me and my brain, he was "fine". Sitting up, talking with family, laughing, he was comfy. I didn't understand why he was there. The idea that my dad was going to die there was not on my mind for whatever reason that day. Until, I stopped being ignorant and went back in. I wanted to give him another kiss. I told him I loved him and he said to me, "I love you too Megs. Hey, I'm gonna try and go to the bathroom and when I'm done I'm gonna see how I feel and I'm gonna come downstairs." I then knew my dad was going to die in that hospital. That room. That bed. That he was not coming home. That he was already gone. I kissed him on the cheek and walked out of the room feeling like someone punched me in the chest and put a pillowcase over my head.
You see, he thought he was home. That is what he would say to me and us everyday! He thought he was at home and he actually thought he was going to get up and go to the bathroom (with a catheter because his bowels were failing) and he was going to use his walker to get out of bed, his chair lift to get downstairs and his crutches to get into the living room to lay in his "downstairs" hospital bed in the living room to watch Modern Family with us. Because that's what he did when he could.
The next day the nurses asked us and we gave permission for them to start the sedation process necessary for my dad's body to be at peace so it could do what it was trying to do. Every hour the meds were raised and each day he got sleepier and sleepier. As my mom and I were sitting next to his bed just watching him sleep and listening to him breath my mom said to me, "You know Megs. There is a very good chance that Dad is going to pass on your birthday." My 25th birthday was on Thursday, December 18th. The truth was that had already crossed my mind. The main reason was because my grandma, my mom's mom, had died last year from ovarian cancer and from the chemo on my 24th birthday while we were visiting my dad in the hospital. I told her that I was aware of the chance.
My dad's wonderful nurse Amy began to tell us all that it was important for all of us to start having alone time with dad for us to say our goodbyes. She said that hearing was the last sense to go. So, we believed her.
December 17th, 2014- I woke up with what I call "word vomit". I immediately grabbed my journal sitting next to my bed and starting writing a poem for my dad. I arrived at the hospital with my poem and sat in with my dad for awhile and while waiting for the very rare breaths I would read it to him. My wonderful boyfriend, my mom, my mommom and I were at the hopsital until about 9:30pm. I just didn't feel right about leaving. My mom and mommom suggested I go home to rest. I needed to see him one more time and read the poem just one more time to him.
12. 17. 14
Dad’s Poem
If today is the day, then that is okay
Follow your beating heart
It has lead you to an adventurous life
To make an amazing family with your beautiful wife
From what I have seen and for whom I have met
I’m sure they would say the same
“Follow that heart of yours, weak or strong, we’re going to be alright.”
If your heart is growing weak
And your breath is becoming short
It’s okay to make that decision,
That commitment is a tough one but we trust in your choice
If today is the day you decide to leave
Please know what your leaving behind
A group of people who love you so much
Your family, your friends, your acquaintances, all people terrible at saying goodbyes
Follow that light we envy
If that is what your heart needs
You have already given so much to so many
We understand that it is time to leave
Your presence, your willingness
To help anyone in need
Is something we will carry forever
Memories, laughs, hugs and kisses, we will remember to try and make things better
Please, don’t be sad or hurt another minute Daddy
Your fight with cancer is almost over
However, it is clear to see that it is the battle you have won
By the legacy you are leaving behind for everyone
We are proud to be your family
To have known such an inspiring man
We will carry you with us
To graduations, weddings, everything important to us
We are so proud to be yours, to have loved you, to have known you
It’s okay if you must go
We will love you for the rest of our lives
Just like you have done so
Daddy, I can’t wait to see you in my dreams
Forever and always I know you’ll be with me
Helping me to believe
That missing you, isn’t as hard as it seems
December 18th, 2014- We got the call around 1:10am. We all drove to the hospital. When we got there the same people that were there on Thursday were there. I immediately went in to go see my dad just like I did everyday that week.
My cheek felt his last ounces of warmth while on his chest. There was no sound like before. Like when I hugged and layed on him at so many other hospitals or at home after so many tearful and hopeful hugs and kisses. I couldn't hear anything. So I put my hand on his chest hoping to feel it. I couldn't feel it. So I opened my eyes wondering if I would be able to see his chest raising, his mouth breathing, his hand grabbing mine. There was a few times I could have sworn I saw his chest raise. I could have sworn...
The nurses showed me to the shared living room where every person who ever helped to make my dad the man he was standing, sitting, crying, hugging.
It sounds awful but I don't even remember the day of my dad's viewing. I remember getting dressed. I remember standing there for awhile.
January 25th, 2015- Currently sitting in my recliner, writing our story. Feeling everything all over again like it happened today. We are doing okay. We take it one day at a time. The "firsts" are hard. The first time I went to our pharmacy and there were no prescriptions for my dad. The first person to ask me, "Hey how's your dad doing?" The first day back at work realizing when I left school I had a dad and the first day back I no longer did.
There are other terrifying things that happen from time to time. Pulling up to the house wondering if my dad was home from work. Walking up the stairs to give my dad a hug. Referring to him like he is still here. Thinking to myself, "Oh no worries, I'll just ask Dad."
We keep saying we just have to take it one day at a time. One hour or minute at a time if we need too. What we are able to do with it or not do with our time is fine, considering everything we've been through.
Today's last few hours, I chose to share our story.