It's just a little over an hour away from being one month ago that Tom took his last breath. I don't know how I feel about that. I'm still in denial...shock.
I went to my first of a 6-week grief support group tonight. It was well worth it and I look forward to figuring out this journey over the next 6-weeks. I know it will take longer than just 6-weeks to get through this, it will probably take the rest of my entire life, but at least I am confident that this is the right direction to go in the grief and coping process.
I'll probably stay up until the time of 11:51pm. That was the time on Feb 14th after Tom took his last breath. Yes, I know the obit date and, in fact, the legal date is 12:45am on Feb 15th, and that is because it isn't legal until the hospice nurse arrives to call the official T.O.D. Every year, it is going to be a struggle for me between the 14th and 15th. I know this already.
I do have Tom's remains home now, in his forever urn. It is so beautiful and was machined by a close friend. It's 304 stainless steel, brushed finish, with Tom's name, dates, an eagle and Isaiah 40:31 engraved on it. I will try to take a good picture and post it sometime. I plan to keep him home with me for a long time. To some people it creeps them out, but it does not to me, not at all. I love looking at the urn and giving him a good night kiss. Our family pic in an 8x10 stands on the shelf next to it, along with one of Tom's favorite eagle head statues.
Well, that is about all I feel like sharing tonight. Thanks for listening, and thank you so much for keeping Nathan, myself and our family in your thoughts and prayers.
Monday, March 14, 2011
Tuesday, March 8, 2011
Life, as I know it
This came flowing out of my fingers as I responded to a friend in a conversation, so I thought I'd share because I've been feeling this way lately as I look at my life, as I know it, currently.
I'm a people-person. I find it fulfilling if I can inspire just one person. I believe in miracles; the birth of Nathan is proof. I truly enjoy love and never take even the small things for granted. It's the miracle of life that is humbling. On the other end of the spectrum, when Tom passed away before my very eyes, and over this time, reflecting on our life together, and his last month of life, as much as it hurts not having him here, his moment of rebirth was beautiful in it's own way; peaceful.
Life, as I knew it, will never be the same. It's like... you know who you are, then you meet your soul mate. Your lives together become one life. When a part of you isn't here, physically, anymore, there is a feeling of being lost. I have Nathan, our miracle, he carries me a lot, more than he'll ever know, but I still have to find that other part of me again, on my own. It will not be the same me before Tom came into my life, it will be a different me, with Nathan by my side.
Love you, buddy, thanks for being the little dude that you are. You are so much like your daddy, and I love every single last drop of your little self. My precious baby, miracle.
I'm a people-person. I find it fulfilling if I can inspire just one person. I believe in miracles; the birth of Nathan is proof. I truly enjoy love and never take even the small things for granted. It's the miracle of life that is humbling. On the other end of the spectrum, when Tom passed away before my very eyes, and over this time, reflecting on our life together, and his last month of life, as much as it hurts not having him here, his moment of rebirth was beautiful in it's own way; peaceful.
Life, as I knew it, will never be the same. It's like... you know who you are, then you meet your soul mate. Your lives together become one life. When a part of you isn't here, physically, anymore, there is a feeling of being lost. I have Nathan, our miracle, he carries me a lot, more than he'll ever know, but I still have to find that other part of me again, on my own. It will not be the same me before Tom came into my life, it will be a different me, with Nathan by my side.
Love you, buddy, thanks for being the little dude that you are. You are so much like your daddy, and I love every single last drop of your little self. My precious baby, miracle.
Beyond Words
I am simply that; beyond words, words alone cannot describe the magnitude of thankfulness that I have for each of you. The amazing blog comments of support and love that has been spread to me and Nathan from throughout the world, is simply astounding. I am beside myself. Thank you SO much. Those four words hardly have an impact to show my appreciation. It is so refreshing to see, in action, the Lord's love resonate from all of you.
Let me back up a minute.... Last night as I lay awake in bed trying to fall asleep, something was telling me to check my blog. I couldn't get it out of my head, so out of bed I arose, turned on the computer, and to my amazement, I found 227 comments on my post "How Are You Doing?" I couldn't believe it! I know Tom and I both know a lot of people, but did that many people really read my blog? And did that many people really leave a comment? I only started blogging again as a way to let friends and family have a place to go to learn what was going on with us, a way for me to communicate with everyone and not have to repeat myself a million times over. After Tom passed away, I still find that blogging/writing is therapeutic to me; that's why I continue to write. Well, I was so intrigued with these 227 comments, I poured my eyes into reading each and every one.
As I read more and more, the short phrase about a "love bomb" kept repeating itself by comment after comment. Some commenters left a note on where the live. Some from Indiana, Ohio, California, all over the USA, and even into Canada and one from Malaysia! WOW! I laughed, I cried, my heart raced, I felt (and still feel) so LOVED by all of these complete strangers taking personal time out of their day to read my story and leave me very thoughtful, helpful, and encouraging words in their comments.
So what was this "love bomb" that kept repeating itself? I decided to google it. I found a website here and Facebook page here. What a great concept, a networking group of caring people shining in, showing God's love to people going through a tough time, or just need to be reminded that they matter in the world. How amazing!
To all my Love Bombers: Thank You SOOO SOOO SOOO much! I cannot begin to express my gratitude and thankfulness for the love you have shown me, the stories you have shared and the support you demonstrated. Complete strangers, showing and sharing love. It is simply Beyond Words -- a true expression of God's Love.
I am looking forward to joining this Love Bomb group to help spread the love to others that need to hear it. It really made my night/day and I slept wonderful.
Heartfelt thanks,
Roxanne
Let me back up a minute.... Last night as I lay awake in bed trying to fall asleep, something was telling me to check my blog. I couldn't get it out of my head, so out of bed I arose, turned on the computer, and to my amazement, I found 227 comments on my post "How Are You Doing?" I couldn't believe it! I know Tom and I both know a lot of people, but did that many people really read my blog? And did that many people really leave a comment? I only started blogging again as a way to let friends and family have a place to go to learn what was going on with us, a way for me to communicate with everyone and not have to repeat myself a million times over. After Tom passed away, I still find that blogging/writing is therapeutic to me; that's why I continue to write. Well, I was so intrigued with these 227 comments, I poured my eyes into reading each and every one.
As I read more and more, the short phrase about a "love bomb" kept repeating itself by comment after comment. Some commenters left a note on where the live. Some from Indiana, Ohio, California, all over the USA, and even into Canada and one from Malaysia! WOW! I laughed, I cried, my heart raced, I felt (and still feel) so LOVED by all of these complete strangers taking personal time out of their day to read my story and leave me very thoughtful, helpful, and encouraging words in their comments.
So what was this "love bomb" that kept repeating itself? I decided to google it. I found a website here and Facebook page here. What a great concept, a networking group of caring people shining in, showing God's love to people going through a tough time, or just need to be reminded that they matter in the world. How amazing!
To all my Love Bombers: Thank You SOOO SOOO SOOO much! I cannot begin to express my gratitude and thankfulness for the love you have shown me, the stories you have shared and the support you demonstrated. Complete strangers, showing and sharing love. It is simply Beyond Words -- a true expression of God's Love.
I am looking forward to joining this Love Bomb group to help spread the love to others that need to hear it. It really made my night/day and I slept wonderful.
Heartfelt thanks,
Roxanne
Sunday, February 27, 2011
It all happened so fast
Why did it have to be that way. I know God has a plan for all of our lives, but I still wish it didn't have to all happen so fast. Tom and I both knew this time would come, but never expected it to go so fast. The past 9 months changed our lives..... and not like the kind of 9 months that changed our lives in 2008 when we added to our family. This 9 months in 2010 was so different. We never lost hope, faith or love. But in the end, the physical being loss is still shocking. Even though we knew the capabilities of this cancer that we were facing, it still all happened so fast.
The past few days Nathan and I have been watching home videos. Nathan requests, "See Dada, See Dada." Tom had recorded a message for Nathan the day before he had surgery in August. It brought me to tears the first time we watched it together. Since, we've seen it multiple times and every time I still wish he was here. I'm so grateful he did that for not only Nathan, but me too, and the rest of our family. His message not only shows his love, but also his faith. I love you, hunny.
It all happened so fast, I knew life would be just me and Nathan in the end, and as hard as it was to bear the thought of Tom not seeing Nathan off to kindergarden, I still never imagined everything would happen so fast. I know I keep saying that, and I can't help it. Just two months prior was Nathan's 2nd birthday party, and watching the video now, knowing how sick Tom was inside, he was full of life on the outside. After presents were done, he makes everyone laugh as he says, "ok, presents done, time to chug beer!" Those who don't know my husband's sense of humor won't really understand that he didn't really intend to actually "chug beer" but it was just way of getting people to laugh. He loved to do that, he loved getting people to laugh.
Still, it all happened so fast. I would not have wanted to know 9 months ago how life's events would change, but still, right up until the last days, even knowing Tom was home on hospice, a part of me had hope that he would get better. It was a hard day when I realized it wasn't going to happen. That's when I knew everything I was doing to help my husband to be comfortable as he transitioned from this life to his new life, wasn't going to bring him back to me in my earthly life. I yearn for the day I can see him again. Until then, I have to figure out what this life means for Nathan and I, what we will do, and trust in God that He will show us and teach us. It's not going to be easy, so I hold on to hope and faith to get me through.
The past few days Nathan and I have been watching home videos. Nathan requests, "See Dada, See Dada." Tom had recorded a message for Nathan the day before he had surgery in August. It brought me to tears the first time we watched it together. Since, we've seen it multiple times and every time I still wish he was here. I'm so grateful he did that for not only Nathan, but me too, and the rest of our family. His message not only shows his love, but also his faith. I love you, hunny.
It all happened so fast, I knew life would be just me and Nathan in the end, and as hard as it was to bear the thought of Tom not seeing Nathan off to kindergarden, I still never imagined everything would happen so fast. I know I keep saying that, and I can't help it. Just two months prior was Nathan's 2nd birthday party, and watching the video now, knowing how sick Tom was inside, he was full of life on the outside. After presents were done, he makes everyone laugh as he says, "ok, presents done, time to chug beer!" Those who don't know my husband's sense of humor won't really understand that he didn't really intend to actually "chug beer" but it was just way of getting people to laugh. He loved to do that, he loved getting people to laugh.
Still, it all happened so fast. I would not have wanted to know 9 months ago how life's events would change, but still, right up until the last days, even knowing Tom was home on hospice, a part of me had hope that he would get better. It was a hard day when I realized it wasn't going to happen. That's when I knew everything I was doing to help my husband to be comfortable as he transitioned from this life to his new life, wasn't going to bring him back to me in my earthly life. I yearn for the day I can see him again. Until then, I have to figure out what this life means for Nathan and I, what we will do, and trust in God that He will show us and teach us. It's not going to be easy, so I hold on to hope and faith to get me through.
Tuesday, February 22, 2011
How are you doing?
This is a difficult question. One that I have been asked quite frequently the past couple days, and I greatly appreciate everyone's sincerity, so this post is my attempt to answer the question.
I am a little lost.
I am tired.
I am missing him.
I love him.
I am relieved that he's not in pain anymore.
I am still in shock.
I wish it didn't have to be this way.
I am grateful for him.
I hurt deep inside.
I'm sad for Nathan.
I cry when no one is around.
Psalm 61:1-3 says, "Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is heigher than I. For you have been my refuge, a strong tower against the foe"
The burden of losing my best friend, my husband, the father of my son, Tom, is far too heavy for me to carry alone. I trust in the Lord, and come to Him to help me learn how to cope, and ask Him to carry this burden from my heavy shoulders. It doesn't happen overnight, in a day, in a week, a month; I have to learn to let go. It's not easy because I yearn to have Tom back, but I have to ask the Lord to teach me patience to live the life He has laid out for me until the day that Tom and I are reunited. Until then, Tom's life and memory of him will never be forgotten. I have a wonderful support system of family and friends that will help Nathan and I through our life here on earth. We all help each other. Who can't take their eyes off of Nathan; he is his father through-and-through, after all.
I am so blessed to have Tom's wonderful buds in my life to help take Nathan under their wings and teach him all of the things Tom would have taught Nathan himself. There is no doubt in my mind that Nathan will not know and understand the person his daddy was. I look forward to watching Nathan grow into the man Tom was. Tom was a devoted and loving husband, father and friend. It's the person he was to each of us that we will never forget.
So, the question, "How are you doing?" I don't have a definitive answer. But I do have faith in the Lord, and Him to lean on to carry this burden of pain of losing my husband. I will teach Nathan the same. It won't be easy, I don't know that it ever will become easy. The strength I have isn't mine alone. It's blessed upon me through my faith in God. Jesus died for our sins so that we may have eternal life. He gives me strength.
I've heard friends say and ask this question, in general, not directed to me.... 'how do we move on?' My friends, I don't have the answer, and I don't know that any human on earth could answer that question. We must ask Him. If you have faith, ask Him. He's listening, always listening. Lean on Him. If you are someone who does not know Jesus Christ as your Savior, just ask Him "Come to me." You must first approach Him and then talk to Him and quietly listen. The answers don't always come out directly, but watch your daily life, live what He has laid our for you, and ask him to carry your burdens, and you will see your life change. I'm not saying daily living is easy, after having experienced this great loss, but it is as simple as asking to help find peace. Tom would say the same. The Lord will carry you if you ask Him.
I will always miss Tom.
I will always love him.
I will always feel a little lonely.
I will always be grateful to him.
I will always have a pain deep inside my heart.
I will always talk to Nathan about his daddy.
I will always celebrate the life Tom lived.
I will always cry when no one is around.
But with all that, I have faith, I have the Lord to help carry the burden weighing down my shoulders, and give me the strength I need everyday.
Still, whenever I am asked "How are you doing?" I might not have an answer because it's too difficult to say for sure. I'm not feeling "good" because I just lost my husband. I'm not "horrible" because I have faith in God. I'm not just "ok" because I have a loving family and wonderful friends. So, maybe, for now, I'm "alright" because I always have Him to carry me.
Love,
Roxanne
I am a little lost.
I am tired.
I am missing him.
I love him.
I am relieved that he's not in pain anymore.
I am still in shock.
I wish it didn't have to be this way.
I am grateful for him.
I hurt deep inside.
I'm sad for Nathan.
I cry when no one is around.
Psalm 61:1-3 says, "Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is heigher than I. For you have been my refuge, a strong tower against the foe"
The burden of losing my best friend, my husband, the father of my son, Tom, is far too heavy for me to carry alone. I trust in the Lord, and come to Him to help me learn how to cope, and ask Him to carry this burden from my heavy shoulders. It doesn't happen overnight, in a day, in a week, a month; I have to learn to let go. It's not easy because I yearn to have Tom back, but I have to ask the Lord to teach me patience to live the life He has laid out for me until the day that Tom and I are reunited. Until then, Tom's life and memory of him will never be forgotten. I have a wonderful support system of family and friends that will help Nathan and I through our life here on earth. We all help each other. Who can't take their eyes off of Nathan; he is his father through-and-through, after all.
I am so blessed to have Tom's wonderful buds in my life to help take Nathan under their wings and teach him all of the things Tom would have taught Nathan himself. There is no doubt in my mind that Nathan will not know and understand the person his daddy was. I look forward to watching Nathan grow into the man Tom was. Tom was a devoted and loving husband, father and friend. It's the person he was to each of us that we will never forget.
So, the question, "How are you doing?" I don't have a definitive answer. But I do have faith in the Lord, and Him to lean on to carry this burden of pain of losing my husband. I will teach Nathan the same. It won't be easy, I don't know that it ever will become easy. The strength I have isn't mine alone. It's blessed upon me through my faith in God. Jesus died for our sins so that we may have eternal life. He gives me strength.
I've heard friends say and ask this question, in general, not directed to me.... 'how do we move on?' My friends, I don't have the answer, and I don't know that any human on earth could answer that question. We must ask Him. If you have faith, ask Him. He's listening, always listening. Lean on Him. If you are someone who does not know Jesus Christ as your Savior, just ask Him "Come to me." You must first approach Him and then talk to Him and quietly listen. The answers don't always come out directly, but watch your daily life, live what He has laid our for you, and ask him to carry your burdens, and you will see your life change. I'm not saying daily living is easy, after having experienced this great loss, but it is as simple as asking to help find peace. Tom would say the same. The Lord will carry you if you ask Him.
I will always miss Tom.
I will always love him.
I will always feel a little lonely.
I will always be grateful to him.
I will always have a pain deep inside my heart.
I will always talk to Nathan about his daddy.
I will always celebrate the life Tom lived.
I will always cry when no one is around.
But with all that, I have faith, I have the Lord to help carry the burden weighing down my shoulders, and give me the strength I need everyday.
Still, whenever I am asked "How are you doing?" I might not have an answer because it's too difficult to say for sure. I'm not feeling "good" because I just lost my husband. I'm not "horrible" because I have faith in God. I'm not just "ok" because I have a loving family and wonderful friends. So, maybe, for now, I'm "alright" because I always have Him to carry me.
Love,
Roxanne
Wednesday, February 16, 2011
Services details
After a 5 year battle with Metastatic Melanoma skin cancer, Tom took his last breath here on Earth and is now at peace with God, pain and cancer-free. I will always love you, Tom my hunny, and look forward to the coming years watching Nathan grow into the man his father was. Thank you, everyone, for your love and support.
Funeral arrangements:
Saturday, February 19th, 2011
Whiting Community Baptist Church, 1020 Tullar Road, Neenah
9:30am Visitation
11am Service
*In lieu of flowers, a trust fund will be set up in Nathan's name
A luncheon will follow at Bridgewood Conference Center, 1000 Cameron Way, Neenah (next to Ground Round) from 12noon - 2pm.
*all food and beverages will be provided, no carry-ins allowed.
Thank you, everyone, for all of your continuous love, support and prayers. Please feel free to continue to share your memories and pictures of Tom on the Facebook Group page Friends of Tom Schwandt.
Love, Roxanne
My Love
I love you, Tom my hunny. You are the love of my life, and always will be. You taught me a lot, made me laugh so much more than I ever imagined, and gave me the most miracle of gifts that anyone could ever give; our son.
Like you always say, keep it simple, so I will do my best to just keep this simple. Only you and God know everything else going through my mind.
Tuesday, Feb 8th - Sunday, Feb 13th
Tom was released from AMC to come home, on hospice care (as previously stated in the below post)
Tuesday night I was on my own with Nathan and Tom. All Tom wanted to do all the time was take a shower because the hot water felt so comforting and relaxing on his sore aching body. I wished I could have given him every shower he asked for, but the pain patch on his neck could not get wet for 12 hours. It was difficult to explain to Tom why he couldn't have a shower, and why he needed to wait. Tom was still experiencing considerable confusion as a result of the seizure and growing cancer, as well as weakness in his body. I was up with Tom about 3 or 4 times that night.
Hospice came for the first visit/consultation on Wednesday morning. Tom was displaying a great deal of anxiety. His care team and Dr decided upon proper dosage of meeds to help his pain relief and anxiety. My sister Suzie was able to come help me, she arrived late Wed evening. Had she not gotten here when she did, I don't know what I would have done in the morning. Sorry, but this event that happened is private. No one got hurt.
It's getting difficult for me to remember each day individually, but each day that passed, Tom showed significant progression in the dying process. Again, had my sister not been here to help me at night, I couldn't have gotten through the night's events. Greg, Tom's best friend, also came over overtime I called him when we needed his support and help, no matter what time it was.
Thursday night it was very difficult for Tom to stand up on his own legs, and it was hard for me to help him get into bed. We had called in for help to get him in a more comfortable position, then the following day, a hospital bed was ordered and arrived. It would be much more comfortable and easier for Tom, and it was.
I am sparing a lot of detail because much of what went on is very private and nothing that I feel is necessary to share. The natural dying process is very difficult to watch the love of your life experience.
It came to the point that Tom was unable to swallow his medications, even crushed and syringed. The hospice nurses and social workers were here at the house daily, sometimes twice or more a day to help coach us through the process and to monitor Tom's progression.
Every day seemed to have such change, and everything happened so fast. By Sunday, Tom became increasingly unaware and unresponsive. We knew he could still here us as his spirit is very much alive, just his body was what was dying.
Monday, February 14th
When the hospice nurse arrived early Monday morning, she gave Tom a thorough exam and explained a lot of signs she was seeing. She explained to us that this is the time we needed to ensure family and close friends that wanted to come say anything to Tom. The day was filled with just that. I wanted to be sure and give everyone their own alone time with Tom to tell him what they wanted without worrying about what others would think of what they said. It is a private time, a private moment to have with your beloved husband, father, brother, son, and friend.
The evening progressed more and more, another nurse came, finally a pain pump was hooked up into Tom's port, and I was giving him other meds in the form of a topical cream rubbed onto his wrist. This all due to the fact that Tom no longer had a swallowing reflux.
As the evening went on, and signs became more pronounced, my sisters and I had a private moment with Tom praying over him. I called Greg to come, and in the short time that I had, Tom took his final breath. It was easy and calming, relaxing and gentle for him.
After my private time with Tom following his passing, we phoned family and the nurse. Official time of death is announced by the hospice nurse when she arrives, which wasn't until 12:45am February 15th.
Sparing the rest of the details...private for family present. Nathan and I, together, gave daddy a last kiss.
I'm only able to write this post through because I have the support of my family, and my sisters are here in the room with me, as well as Nathan at my side. If it weren't for Nathan's smiling little sweet face, I don't know what I would do. And when my sister's leave my house, I know everything will change, but I do have a lot, a ton, of supportive friends and family, so while I know Nathan and I will never be alone, it still won't be easy.
Thank you for all of your love, support, help and prayers. Funeral arrangement details will be in the next post. You can also find information on the Friends of Tom Schwandt group page on Facebook.
Love,
Tom, Roxanne & Nathan
Like you always say, keep it simple, so I will do my best to just keep this simple. Only you and God know everything else going through my mind.
Tuesday, Feb 8th - Sunday, Feb 13th
Tom was released from AMC to come home, on hospice care (as previously stated in the below post)
Tuesday night I was on my own with Nathan and Tom. All Tom wanted to do all the time was take a shower because the hot water felt so comforting and relaxing on his sore aching body. I wished I could have given him every shower he asked for, but the pain patch on his neck could not get wet for 12 hours. It was difficult to explain to Tom why he couldn't have a shower, and why he needed to wait. Tom was still experiencing considerable confusion as a result of the seizure and growing cancer, as well as weakness in his body. I was up with Tom about 3 or 4 times that night.
Hospice came for the first visit/consultation on Wednesday morning. Tom was displaying a great deal of anxiety. His care team and Dr decided upon proper dosage of meeds to help his pain relief and anxiety. My sister Suzie was able to come help me, she arrived late Wed evening. Had she not gotten here when she did, I don't know what I would have done in the morning. Sorry, but this event that happened is private. No one got hurt.
It's getting difficult for me to remember each day individually, but each day that passed, Tom showed significant progression in the dying process. Again, had my sister not been here to help me at night, I couldn't have gotten through the night's events. Greg, Tom's best friend, also came over overtime I called him when we needed his support and help, no matter what time it was.
Thursday night it was very difficult for Tom to stand up on his own legs, and it was hard for me to help him get into bed. We had called in for help to get him in a more comfortable position, then the following day, a hospital bed was ordered and arrived. It would be much more comfortable and easier for Tom, and it was.
I am sparing a lot of detail because much of what went on is very private and nothing that I feel is necessary to share. The natural dying process is very difficult to watch the love of your life experience.
It came to the point that Tom was unable to swallow his medications, even crushed and syringed. The hospice nurses and social workers were here at the house daily, sometimes twice or more a day to help coach us through the process and to monitor Tom's progression.
Every day seemed to have such change, and everything happened so fast. By Sunday, Tom became increasingly unaware and unresponsive. We knew he could still here us as his spirit is very much alive, just his body was what was dying.
Monday, February 14th
When the hospice nurse arrived early Monday morning, she gave Tom a thorough exam and explained a lot of signs she was seeing. She explained to us that this is the time we needed to ensure family and close friends that wanted to come say anything to Tom. The day was filled with just that. I wanted to be sure and give everyone their own alone time with Tom to tell him what they wanted without worrying about what others would think of what they said. It is a private time, a private moment to have with your beloved husband, father, brother, son, and friend.
The evening progressed more and more, another nurse came, finally a pain pump was hooked up into Tom's port, and I was giving him other meds in the form of a topical cream rubbed onto his wrist. This all due to the fact that Tom no longer had a swallowing reflux.
As the evening went on, and signs became more pronounced, my sisters and I had a private moment with Tom praying over him. I called Greg to come, and in the short time that I had, Tom took his final breath. It was easy and calming, relaxing and gentle for him.
After my private time with Tom following his passing, we phoned family and the nurse. Official time of death is announced by the hospice nurse when she arrives, which wasn't until 12:45am February 15th.
Sparing the rest of the details...private for family present. Nathan and I, together, gave daddy a last kiss.
I'm only able to write this post through because I have the support of my family, and my sisters are here in the room with me, as well as Nathan at my side. If it weren't for Nathan's smiling little sweet face, I don't know what I would do. And when my sister's leave my house, I know everything will change, but I do have a lot, a ton, of supportive friends and family, so while I know Nathan and I will never be alone, it still won't be easy.
Thank you for all of your love, support, help and prayers. Funeral arrangement details will be in the next post. You can also find information on the Friends of Tom Schwandt group page on Facebook.
Love,
Tom, Roxanne & Nathan
Tuesday, February 8, 2011
The Road Ahead
Before I move on to the title of this post, I just need to catch up a little from yesterday.
After leaving Tom Sunday evening, with him walking me down to the elevators feeling pretty good, I was fairly confident he would be able to come home on Monday. I spoke with his nurse before I went to bed and he was doing good. I didn't get a chance to call in the morning before I rushed out the door, leaving Nathan behind with Auntie Sasha (making a nice mess of toys for her!).
When I arrived by Tom, I asked his nurse how the night went and it went horrible. He was up every 2 hours needing pain meds, anti-anxiety and required a babysitter (a clinical technician) to sit in the room 24 hours because he kept trying to get up, setting off the bed alarm. He needed help (and still does to a degree) getting from bed to bathroom. I was heartbroken to hear this turn of events which made everything sound like he wasn't going to get to go home (monday), and he didn't.
The Road Ahead
It is going to be rough and only get harder. I need to remind you a little about the progression of Tom's cancer over the past 8 months.
May '10 - found lump, learned cancer had returned
June '10 - spent going back and forth to Madison for tests, and consult with Melanoma specialist.
August '10 - had final major surgery in groin (original site where the Melanoma keeps returning)
Sept '10 - post surgery follow-up CT scan showed growth due to microscopic cells having been left behind from surgery. (yes, it happens, there are no set of eyes and no medical equipment that can detect microscopic cells)
Oct '10 - recovery from surgery, followed by beginning of 6 weeks intense radiation
Nov '10 - completed radiation, CT scan follow-up showed significant growth in the groin as well as lymph nodes up to underneath his lungs causing uncontrollable hiccups.
Dec '10 - recovery form radiation
Jan '10 - one cycle of Temodar chemo pill, our vacation, confusion began
Feb '10 - went in for pain (especially in the neck), confusion, and necessary blood work before second cycle of Temodar chemo pill. CT scan and MRI showed major progression throughout Tom's body, full of melanoma, as well as a leision on his C2 vertebrae. Spent 6 1/2 days in the hospital.
Tom's Oncologist has explained to me and the family how every step we took to fight this, the melanoma came back as if it was saying 'na na, I'm still here...' and had spread/grown each time. With Tom's state of confusion and it having become worse after the seizure he experienced on Thursday morning, we had to really think about, and ask Tom, what to do next. There is another chemo option, but the chance of it even touching this amount of melanoma that now fills his body is maybe a 1 in 10 chance. So, say he goes through this chemotherapy. He will get even weaker, be extremely sick, have very little quality of daily living. Knowing what Tom went through in 2005, I know for a fact that he never wanted to go through that again, and if he had to, to give him 5 more years with Nathan and me, he said he would do it. The Dr explained to Tom his options and Tom said, No, that he just wanted to be with this family. At this point, Tom's whole body is weakening. For example, Wed morning last week, Tom went in the fridge to grab the new full gallon of milk to pour himself a glass of milk at breakfast, and the gallon was very difficult for him to manage (I stepped in and helped him). Then, on the way to the 10:30am appt, on the highway just before our exit, I could see him fiddling around and his hand went to the door handle and I quickly locked the doors and freaked a little 'ah, that's the door!'. He then rolled the window down a little and sat there. I asked him if he was too hot, I could turn the heat down, and he said No, he wasn't. So I asked why he rolled the window down, and he replied, frustrated, that he didn't know, so I rolled it back up. We got off our exit (still having about 4 miles to go) and he said something to the effect that the car ride seemed to take forever. Those are just a few minor examples of the difficulties Tom has been facing, prior to the seizure.
What's next
Tom was able to understand and sign important paperwork that allows me, whom he named, to make decisions on his behalf if he should be unable to do so. That night, the family and I met together to discuss how we felt about Tom's next steps, keeping in mind Tom's wishes and what he has expressed to all of us over the past 6 years. We all were in consensus that we do not want Tom to have to endure anything painful and torturous that would not give him a better quality of life after going through such treatments. This has been extremely difficult for all of us, including Tom, to accept. This is not something you think you will ever have to even consider, especially at our age. So, to make this clear, and I am having a difficult time even typing this.... Yes, Tom is now on hospice care.
Tom's Oncologist and Palliative Care Doctor both came in to visit Tom this morning. His Palliative Care doctor was his first Oncologist in 2005, so he had seen Tom through chemo at that time, then in 2006, he named his replacement who has been Tom's Oncologist since, through today. Both Doctors commended Tom on his strength and courage having gone through as much chemo, surgeries and radiation as he has in his lifetime. They both agreed that Tom has gone above and beyond fighting such a tough battle, and told Tom not to ever wonder if there was something else he could have done.
I hope you all are following me on this. Please know and believe that as hard as this is, it is even more difficult to write about it. Tomorrow, the hospice nurse and social worker will be here to help us get everything we need to ensure Tom's safety and comfort. Tom clearly understands what this means, being on hospice care, and this is what HE wants, and his family and I stand behind him in support and love.
So, how is Tom doing right now?
I know this is a top question on all of your minds. Tom is very glad to be home! Back up to this morning... Tom took a relaxing hot shower (his favorite thing to do because the heat feels so good on his sore body), and settled into bed. We spoke with the Drs again (which is explained above), and confirmed he would be going home today. The care management team worked on getting us an appt and confirming insurance with the hospice agency. It took quite a while this morning waiting for that and discharge paperwork, and Tom was very antsy. He kept asking to take a shower. He has a pain patch on his neck that lasts for 12 hours and cannot get wet, so we had to keep reminding him of that, being the reason he needed to wait till before bed to shower. A few minutes after I arrived at the hospital, I realized Tom was talking to me, to hold a conversation, and was not making any sense at all. He struggled to get the words out that he wanted to speak, and what he put together didn't make sense whatsoever. I asked him if he was confused and he said No. I alerted the nurse because he wasn't doing that the day before, although he did sleep most of Monday after a busy weekend of visitors. That, and it wasn't the same kind of confusion as he had previously (car ride on Wed, as well as confusion during our FL vacation). She said he had been doing that last night and this morning before I arrived.
It's hard to explain. Tom knows who he is, he knew he was in the hospital, he knows who other people are, recalls times past, but when he wants to express something (a feeling, an idea, a desire, dices something around him or on tv), he has a difficult time finding the words he wants to say, and what he does say doesn't form a complete thought nor do the words he says make any sense when used together. Tom does not think he's confused, he feels he makes sense. He has been using the word 'intense' to describe anything.
I need you to understand this. This confused/odd talk is normal, unfortunately, and it will probably only get worse. It is caused from that melanoma lesion on his C2 vertebrae high up in his neck, affecting his brain. It's only a matter of time before the melanoma attacks his brain and causes more damage. Hospice care will help me to learn how to manage it to best help Tom get through his thoughts.
I don't know how to conclude this post. I know a lot of you probably have questions, and I'm sure a lot of you would like to come visit Tom. We don't want to overload Tom with too many visitors per day, because it is very wearing on him. We also have our household to run, and family and friends will be helping me get things done as well as hang out with Tom when I need to be away from home. Tom does need 24 hr care, and for at night I have a baby monitor set up in his room so that I can hear him and wake up if he wakes. (yes, if you hadn't known, Tom sleeps in our big bed by himself, a result of many difficult nights for him finding a comfortable spot to sleep and my snoring problem, haha, at least Nathan doesn't mind --we co-sleep).
Thank you, everyone, for offering your help and sending me your phone numbers to call. I greatly appreciate all of the help and support. I will not hesitate to phone you if I need. Thank you, from the bottom of my heart. Keep the prayers coming, as we need them now, just as much as ever. Thanks for adding us to your various prayer chains as well. Please pray for comfort and peace of mind.
Love,
Roxanne
After leaving Tom Sunday evening, with him walking me down to the elevators feeling pretty good, I was fairly confident he would be able to come home on Monday. I spoke with his nurse before I went to bed and he was doing good. I didn't get a chance to call in the morning before I rushed out the door, leaving Nathan behind with Auntie Sasha (making a nice mess of toys for her!).
When I arrived by Tom, I asked his nurse how the night went and it went horrible. He was up every 2 hours needing pain meds, anti-anxiety and required a babysitter (a clinical technician) to sit in the room 24 hours because he kept trying to get up, setting off the bed alarm. He needed help (and still does to a degree) getting from bed to bathroom. I was heartbroken to hear this turn of events which made everything sound like he wasn't going to get to go home (monday), and he didn't.
The Road Ahead
It is going to be rough and only get harder. I need to remind you a little about the progression of Tom's cancer over the past 8 months.
May '10 - found lump, learned cancer had returned
June '10 - spent going back and forth to Madison for tests, and consult with Melanoma specialist.
August '10 - had final major surgery in groin (original site where the Melanoma keeps returning)
Sept '10 - post surgery follow-up CT scan showed growth due to microscopic cells having been left behind from surgery. (yes, it happens, there are no set of eyes and no medical equipment that can detect microscopic cells)
Oct '10 - recovery from surgery, followed by beginning of 6 weeks intense radiation
Nov '10 - completed radiation, CT scan follow-up showed significant growth in the groin as well as lymph nodes up to underneath his lungs causing uncontrollable hiccups.
Dec '10 - recovery form radiation
Jan '10 - one cycle of Temodar chemo pill, our vacation, confusion began
Feb '10 - went in for pain (especially in the neck), confusion, and necessary blood work before second cycle of Temodar chemo pill. CT scan and MRI showed major progression throughout Tom's body, full of melanoma, as well as a leision on his C2 vertebrae. Spent 6 1/2 days in the hospital.
Tom's Oncologist has explained to me and the family how every step we took to fight this, the melanoma came back as if it was saying 'na na, I'm still here...' and had spread/grown each time. With Tom's state of confusion and it having become worse after the seizure he experienced on Thursday morning, we had to really think about, and ask Tom, what to do next. There is another chemo option, but the chance of it even touching this amount of melanoma that now fills his body is maybe a 1 in 10 chance. So, say he goes through this chemotherapy. He will get even weaker, be extremely sick, have very little quality of daily living. Knowing what Tom went through in 2005, I know for a fact that he never wanted to go through that again, and if he had to, to give him 5 more years with Nathan and me, he said he would do it. The Dr explained to Tom his options and Tom said, No, that he just wanted to be with this family. At this point, Tom's whole body is weakening. For example, Wed morning last week, Tom went in the fridge to grab the new full gallon of milk to pour himself a glass of milk at breakfast, and the gallon was very difficult for him to manage (I stepped in and helped him). Then, on the way to the 10:30am appt, on the highway just before our exit, I could see him fiddling around and his hand went to the door handle and I quickly locked the doors and freaked a little 'ah, that's the door!'. He then rolled the window down a little and sat there. I asked him if he was too hot, I could turn the heat down, and he said No, he wasn't. So I asked why he rolled the window down, and he replied, frustrated, that he didn't know, so I rolled it back up. We got off our exit (still having about 4 miles to go) and he said something to the effect that the car ride seemed to take forever. Those are just a few minor examples of the difficulties Tom has been facing, prior to the seizure.
What's next
Tom was able to understand and sign important paperwork that allows me, whom he named, to make decisions on his behalf if he should be unable to do so. That night, the family and I met together to discuss how we felt about Tom's next steps, keeping in mind Tom's wishes and what he has expressed to all of us over the past 6 years. We all were in consensus that we do not want Tom to have to endure anything painful and torturous that would not give him a better quality of life after going through such treatments. This has been extremely difficult for all of us, including Tom, to accept. This is not something you think you will ever have to even consider, especially at our age. So, to make this clear, and I am having a difficult time even typing this.... Yes, Tom is now on hospice care.
Tom's Oncologist and Palliative Care Doctor both came in to visit Tom this morning. His Palliative Care doctor was his first Oncologist in 2005, so he had seen Tom through chemo at that time, then in 2006, he named his replacement who has been Tom's Oncologist since, through today. Both Doctors commended Tom on his strength and courage having gone through as much chemo, surgeries and radiation as he has in his lifetime. They both agreed that Tom has gone above and beyond fighting such a tough battle, and told Tom not to ever wonder if there was something else he could have done.
I hope you all are following me on this. Please know and believe that as hard as this is, it is even more difficult to write about it. Tomorrow, the hospice nurse and social worker will be here to help us get everything we need to ensure Tom's safety and comfort. Tom clearly understands what this means, being on hospice care, and this is what HE wants, and his family and I stand behind him in support and love.
So, how is Tom doing right now?
I know this is a top question on all of your minds. Tom is very glad to be home! Back up to this morning... Tom took a relaxing hot shower (his favorite thing to do because the heat feels so good on his sore body), and settled into bed. We spoke with the Drs again (which is explained above), and confirmed he would be going home today. The care management team worked on getting us an appt and confirming insurance with the hospice agency. It took quite a while this morning waiting for that and discharge paperwork, and Tom was very antsy. He kept asking to take a shower. He has a pain patch on his neck that lasts for 12 hours and cannot get wet, so we had to keep reminding him of that, being the reason he needed to wait till before bed to shower. A few minutes after I arrived at the hospital, I realized Tom was talking to me, to hold a conversation, and was not making any sense at all. He struggled to get the words out that he wanted to speak, and what he put together didn't make sense whatsoever. I asked him if he was confused and he said No. I alerted the nurse because he wasn't doing that the day before, although he did sleep most of Monday after a busy weekend of visitors. That, and it wasn't the same kind of confusion as he had previously (car ride on Wed, as well as confusion during our FL vacation). She said he had been doing that last night and this morning before I arrived.
It's hard to explain. Tom knows who he is, he knew he was in the hospital, he knows who other people are, recalls times past, but when he wants to express something (a feeling, an idea, a desire, dices something around him or on tv), he has a difficult time finding the words he wants to say, and what he does say doesn't form a complete thought nor do the words he says make any sense when used together. Tom does not think he's confused, he feels he makes sense. He has been using the word 'intense' to describe anything.
I need you to understand this. This confused/odd talk is normal, unfortunately, and it will probably only get worse. It is caused from that melanoma lesion on his C2 vertebrae high up in his neck, affecting his brain. It's only a matter of time before the melanoma attacks his brain and causes more damage. Hospice care will help me to learn how to manage it to best help Tom get through his thoughts.
I don't know how to conclude this post. I know a lot of you probably have questions, and I'm sure a lot of you would like to come visit Tom. We don't want to overload Tom with too many visitors per day, because it is very wearing on him. We also have our household to run, and family and friends will be helping me get things done as well as hang out with Tom when I need to be away from home. Tom does need 24 hr care, and for at night I have a baby monitor set up in his room so that I can hear him and wake up if he wakes. (yes, if you hadn't known, Tom sleeps in our big bed by himself, a result of many difficult nights for him finding a comfortable spot to sleep and my snoring problem, haha, at least Nathan doesn't mind --we co-sleep).
Thank you, everyone, for offering your help and sending me your phone numbers to call. I greatly appreciate all of the help and support. I will not hesitate to phone you if I need. Thank you, from the bottom of my heart. Keep the prayers coming, as we need them now, just as much as ever. Thanks for adding us to your various prayer chains as well. Please pray for comfort and peace of mind.
Love,
Roxanne
Sunday, February 6, 2011
Super Bowl Sunday
Tom has known Sunday was the big game, so I had our day all planned out. The morning didn't go quite as I had hoped, but that's ok. I brought Nathan to the hospital in the morning, and my sister Sasha came with. Nate had on his Packer shirt and I brought Tom's Packer blanket. I wanted to get a Daddy-Son pic of them together, but Nathan didn't want to cooperate. Well, guess that's what ya get with a toddler. The boys were happy to see each other though!
I could tell Tom was definitely feeling much better. With his pain manageable and seemingly under control, and friends visiting, he had a busy morning. Got some appetite, and although everything didn't go down as well as he'd hoped, at least he's feeling hungary and trying to eat! Gotta keep this up before he can leave.
Tonight when I came back to watch the game with Tom, he was very antsy. I know he's tired of being laid up in bed, and he's been asking yesterday and today when he can leave to go home. He has a bed alarm on his bed so that if he tries to get up, an alarm goes off to alert the nurse. Well, apparently he's pretty quick because another nurse tech has now been assigned to hang out with Tom. (LOL) He's still been picking at his IV cord and fidgeting, I think, out of boredom at this point. He does have some memory loss of Wed/Thrs/Fri/Sat due to the seizure he experienced on Thursday morning. I gave him the timeline when we arrived, why he was admitted, what happened on Thrs, the visitors he's had, and that we will find out tomorrow if he can come home.
Tom had a shower this morning, and again about 5pm. He squirmed around in bed for quite a while as we watched the Super Bowl, and finally he asked to take another shower. This is a good sign to know he is back to himself because he was taking showers frequently throughout the day at home simply out of boredom and also to warm up if he was feeling cold. I suggested we go for a walk, so at half-time of the Super Bowl, I had to leave to go pick up Nathan and get him home to bed, so Tom walked me to the elevator (with 2 nurses required to accompany him for safety), and he continued to walk around the corner to take a lap around the 7th floor.
Oh, this is kind of funny, and really tells how much Tom just wants to get out of the hospital now. Two times during his stay since Wed, he's pulled out his IV (needle right out of his port). And this evening when the nurse and I weren't looking, he pulled off his name wrist band! they got a new one for him right away,
Thank you for all of your prayers! I know there have been so many being lifted up and it has really made a difference already! God is holding Tom in his hands for sure.
Love,
Roxanne
I could tell Tom was definitely feeling much better. With his pain manageable and seemingly under control, and friends visiting, he had a busy morning. Got some appetite, and although everything didn't go down as well as he'd hoped, at least he's feeling hungary and trying to eat! Gotta keep this up before he can leave.
Tonight when I came back to watch the game with Tom, he was very antsy. I know he's tired of being laid up in bed, and he's been asking yesterday and today when he can leave to go home. He has a bed alarm on his bed so that if he tries to get up, an alarm goes off to alert the nurse. Well, apparently he's pretty quick because another nurse tech has now been assigned to hang out with Tom. (LOL) He's still been picking at his IV cord and fidgeting, I think, out of boredom at this point. He does have some memory loss of Wed/Thrs/Fri/Sat due to the seizure he experienced on Thursday morning. I gave him the timeline when we arrived, why he was admitted, what happened on Thrs, the visitors he's had, and that we will find out tomorrow if he can come home.
Tom had a shower this morning, and again about 5pm. He squirmed around in bed for quite a while as we watched the Super Bowl, and finally he asked to take another shower. This is a good sign to know he is back to himself because he was taking showers frequently throughout the day at home simply out of boredom and also to warm up if he was feeling cold. I suggested we go for a walk, so at half-time of the Super Bowl, I had to leave to go pick up Nathan and get him home to bed, so Tom walked me to the elevator (with 2 nurses required to accompany him for safety), and he continued to walk around the corner to take a lap around the 7th floor.
Oh, this is kind of funny, and really tells how much Tom just wants to get out of the hospital now. Two times during his stay since Wed, he's pulled out his IV (needle right out of his port). And this evening when the nurse and I weren't looking, he pulled off his name wrist band! they got a new one for him right away,
Thank you for all of your prayers! I know there have been so many being lifted up and it has really made a difference already! God is holding Tom in his hands for sure.
Love,
Roxanne
Saturday, February 5, 2011
Good day but I'm exhausted
It's been a long day for me, and I'm really exhausted so I'm going to just copy/paste some updates I had put on the Facebook Group page today. Thanks for understanding.
Tom is alert this morning. Sort of annoyed to be here by his attitude sometimes, but it's mostly due to the pain meds. He's had some very lucid moments, but also vivid hallucinations. Thus far, we believe it is due to coming down off of one pain med he's been on, but his pain seems to be leveling off, so we don't want to give him anything. Gotta keep his brain thinking. He knows the Super Bowl is tomorrow and the teams playing. I'm looking fwd to family and friends visiting this aft. Early appologies to you guys if Tom seems 'short' with any of ya.
Tom has been awake and alert all day so far. I can tell he's pretty tired tho. He had family and some friends come visit this afternoon. Had us all in laughter. Tom knows what's going on for the most part, but still confused and saying weird things, but seems to be in better spirits this afternoon. I am going to head out soon for a little bit, then I will be back before bedtime. Tom needs to take a good nap now. Thank you everyone for your continued support and prayers! It is so wonderful and amazing!
Good night, Love,
Roxanne
Tom is alert this morning. Sort of annoyed to be here by his attitude sometimes, but it's mostly due to the pain meds. He's had some very lucid moments, but also vivid hallucinations. Thus far, we believe it is due to coming down off of one pain med he's been on, but his pain seems to be leveling off, so we don't want to give him anything. Gotta keep his brain thinking. He knows the Super Bowl is tomorrow and the teams playing. I'm looking fwd to family and friends visiting this aft. Early appologies to you guys if Tom seems 'short' with any of ya.
Tom has been awake and alert all day so far. I can tell he's pretty tired tho. He had family and some friends come visit this afternoon. Had us all in laughter. Tom knows what's going on for the most part, but still confused and saying weird things, but seems to be in better spirits this afternoon. I am going to head out soon for a little bit, then I will be back before bedtime. Tom needs to take a good nap now. Thank you everyone for your continued support and prayers! It is so wonderful and amazing!
Good night, Love,
Roxanne
Friday, February 4, 2011
A better day today!
Tom had a much better day today, and we are all so thankful for your constant prayers!
This morning Tom's parents arrived and Tom knew exactly who they were. I got there and he knew me as well. He was awake and alert, had gone to the bathroom (with assistance) and was asking for drinks of water. Doc came in and spoke with us. I asked to see the CT scan from Wednesday since I've seen all of Tom's previous scans, I wanted to see this latest one with my own eyes. It wasn't pretty. It was obvious to me (a non-expert reader of CT scans) seeing the big grey blobs where they shouldn't be. They are all surrounding Tom's abdomen up and down his spine on the inside (not backside of his spine). The melanoma is in the lymph system causing the nodes to swell significantly, which in turn, causes a great deal of pain and discomfort. We're still trying to find a good pain management plan to help Tom feel better and not be so confused.
Tom took good naps today, and his best buds come up to visit. He was in and out, but this afternoon he really had some fun with us. Our real Tom came out giving the nurse a hard time, saying odd stuff, and realizing it, but making us all laugh. I about pee'd my pants at one point. He gave me a funny look trying to figure out what the heck was wrong with me, why I was laughing like that. I told him he was being silly and making me laugh, and I thanked him for that. A couple of times Tom woke and we could tell he wanted something. When asked, he said, "My Mom...?" Melt my heart! He wanted his Mom! Later in the afternoon he asked where his mom and dad were. I explained they were here and they will be back in the morning, it's ok, get some rest.
This evening Jason and Ava arrived in town. Nathan and Ava had fun meeting and being goofy together. Ava had a long day traveling and she was getting tired of my camera. I loved seeing these two together! Two of the cutest kids ever!!
After everyone was gone, Nathan and I headed up to the hospital to see Daddy before we all went nite-nite. Nathan repeated what I reminded him. "Dada sick," "Dada hurt," "Dada ha-pi-tal" (hospital).
Tom was glad to see little dude and Nathan was sure glad to see his Dada, too. We stayed for a little bit, Nathan gave Daddy a nite-nite kiss and we headed back home.
Tomorrow Papa will come play with Nathan for a while, then Gma Sheila will pick up Nathan for lunch and nap before Auntie Sasha gets into town. We'll have a busy weekend, but all bases are covered. I'm looking forward to Jason coming up to see Tom. He knows Jason is in town now and looking forward to seeing him as well.
Nite all. Thanks for your wonderful prayers, and all the help that's been going on. I appreciate and love you!
xoxo,
Roxanne
This morning Tom's parents arrived and Tom knew exactly who they were. I got there and he knew me as well. He was awake and alert, had gone to the bathroom (with assistance) and was asking for drinks of water. Doc came in and spoke with us. I asked to see the CT scan from Wednesday since I've seen all of Tom's previous scans, I wanted to see this latest one with my own eyes. It wasn't pretty. It was obvious to me (a non-expert reader of CT scans) seeing the big grey blobs where they shouldn't be. They are all surrounding Tom's abdomen up and down his spine on the inside (not backside of his spine). The melanoma is in the lymph system causing the nodes to swell significantly, which in turn, causes a great deal of pain and discomfort. We're still trying to find a good pain management plan to help Tom feel better and not be so confused.
Tom took good naps today, and his best buds come up to visit. He was in and out, but this afternoon he really had some fun with us. Our real Tom came out giving the nurse a hard time, saying odd stuff, and realizing it, but making us all laugh. I about pee'd my pants at one point. He gave me a funny look trying to figure out what the heck was wrong with me, why I was laughing like that. I told him he was being silly and making me laugh, and I thanked him for that. A couple of times Tom woke and we could tell he wanted something. When asked, he said, "My Mom...?" Melt my heart! He wanted his Mom! Later in the afternoon he asked where his mom and dad were. I explained they were here and they will be back in the morning, it's ok, get some rest.
This evening Jason and Ava arrived in town. Nathan and Ava had fun meeting and being goofy together. Ava had a long day traveling and she was getting tired of my camera. I loved seeing these two together! Two of the cutest kids ever!!
Jason and Ava
what a Daddy's girl!
Ava is just 4 days older than Nathan, and lucky Ava seems to have inherited her Mama's height gene. Poor Nate's Mama doesn't have this gene-make-up.
What a doll! I am in love with her!
Nathan suddenly decided to give Ava an unexpected hug.
AWE!!!!
Ava's holding Nathan back from squirming. Thanks for the help, darling!
Riding the tiger, yeah!!
Sweet little loves xoxoxo
After everyone was gone, Nathan and I headed up to the hospital to see Daddy before we all went nite-nite. Nathan repeated what I reminded him. "Dada sick," "Dada hurt," "Dada ha-pi-tal" (hospital).
Tom was glad to see little dude and Nathan was sure glad to see his Dada, too. We stayed for a little bit, Nathan gave Daddy a nite-nite kiss and we headed back home.
Tomorrow Papa will come play with Nathan for a while, then Gma Sheila will pick up Nathan for lunch and nap before Auntie Sasha gets into town. We'll have a busy weekend, but all bases are covered. I'm looking forward to Jason coming up to see Tom. He knows Jason is in town now and looking forward to seeing him as well.
Nite all. Thanks for your wonderful prayers, and all the help that's been going on. I appreciate and love you!
xoxo,
Roxanne
Tom my hunny
I am here in the hospital with Tom writing as he rests after a traumatic past 2 days. I will attempt here to update you all on what has happened these past few days since we returned home from sunny warm Florida to winter storm freezing cold Wisconsin.
So what caused the seizure is not clear yet. The MRI was negative, but I have a strong conviction that something was just missed. Turns out the doc and his NP (right-hand lady doc) both feel the same way. There may be another MRI this weekend yet, but we will wait to find out. As of now, doc feels strongly, based on his expertise that the pain meds are the cause. Tom's pain had increased, so his dosage has increased, and it may had simply reached the boiling point and his body responded with a seizure, as a result. The morphine drip was ordered to cease immediately, and a stronger dose of the pain patch Tom had been on previously was placed on his back. It's a 72 hour patch that continuously releases pain medication.
The goal right now is to find a pain medication that will help Tom be the most comfortable, and not cause him to experience complete confusion or seizures. He is also on an anti-seizure medication to help with that, and an anti-anxiety to help calm so he can get much needed rest. Throughout the day on Thursday, Tom was mostly unresponsive to questions, requests to squeeze a hand, etc... He made a few grumbling sounds, but that was it. Very difficult to see the person you love so much be in this kind of position.
This morning Tom is doing much better. He's been drinking water from a straw, nurse said he swallowed a pill this morning, ate a little pudding, and went to the bathroom. It seems when he does wake from a nap, he asks for a drink of water, so this is great!! He is still in a considerable (a lot) amount of pain, and a bit restless.
Doc came in and explained that all pain medications have side effects that can make people confused and delusional, so we will just keep trying to ensure we've found something that makes Tom the most comfortable, and the least confused. Tom did respond to the Doc that he knew he was in the hospital. Tom said Yes that he knew who Doc was, and he knew who his mom, dad and I were. He also did respond to Doc about some important questions to help us manage his health and comfort. Tom will remain in the hospital through the weekend though.
Jason Payne (Tom's nephew, 2 yrs younger than Tom) is traveling to WI from GA with his youngest child, daughter Ava born 4 days before Nathan. Jason has planned to come this weekend for over a month now as a surprise for Tom's birthday. I am so glad Jason has this opportunity to come see Tom right now, it is so important to be surrounded by family, love and support. I am super excited for Nathan and Ava to finally meet and play together! I have a feeling they will find a way to manipulate all of us with their charm and typical 2 year old antics. Very much looking forward to taking LOTS of pictures of them together!
That's all the update I have for now. Overall, Tom is doing better, but still very critical. I thank you all SO much for your continued support, love, and prayers. I appreciate all of your offers for help as well. So much! We have things under control for now and I have accepted help, which is difficult for me, but I'm doing it. Thank you so much!!!!
Love,
Roxanne
xoxox
Looking back, things started to decline about mid-vacation last week. Tom started to become a little confused and saying weird things, randomly. My sister and I were quite concerned and talked a lot about it one night. We returned home late Monday night, the 31st. Tues the 1st was Tom's 39th bday, and I called the doc in the early AM to get an appt with his Oncologist because we knew he needed to be seen and have bloke work done before he could start round 2 of Temodar (the chemo pill). However, I was mores concerned about his constant neck pain and confusion. They set the appt for Wed at 10:30am. We came here and Tom ended up being admitted to the hospital. He was low on potassium, dehydrated and even more confused than days prior. When Tom took off his shirt to be examed, the left side of his neck and shoulder was clearly swollen. I know for a fact that it had not been swollen at all all week last week, or the days we've been home, and even the night prior, because he had been taking a lot of showers to get warmed up and I continued to put lotion on his skin to keep his skin hydrated (it was drying out quickly).
We also learned, after Tom was weighted in, that he lost nearly 20 lbs. in the past month alone, totally his weight loss due to his illness to nearly 60 lbs. Scroll down or click on earlier posts if you want to see pics of Tom a few years ago, and more recent pics in my vacation posts to get an idea if you really wanna see the changes.
Once admitted, Tom was hooked up to pain meds, morphine, and MRI and CT scans were ordered stat. For the night, Tom was comfortable and got much needed rest.
Thursday morning we (Tom's parents and I) arrived early to meet with the doc in Tom's room. Doc explained Tom had significant pain complications through the night, and that the MRI scan showed negative for melanoma in his brain, (it is very common that Melanoma will attack the brain first before other organs) so while this was good news, we still didn't have an answer regarding his confused state of mind.
CT scan showed the melanoma has completely spread throughout his body through his lymph system. I had a chance today (Friday) to see the scan of myself since I had seen all of the scans he's had the past 8 months that we've been fighting since this return. It was obviously seen in the scan, big enlarged lymph nodes surrounding his aorta and major nerves that run up and down the spine down to the legs. No doubt this is what's causing his terrible pain.
The morning on Thursday quickly took a turn for the worse momentarily after the doc had left the room. It was just me and Tom's parents with him and it was right around 8am when he began to shake. Everything happened so quickly, my initial reaction was that he was experiencing the shakes like he did when he was on chemo in-patient in 2005. As soon as I hit the nurse call button for warm blankets to rush in the room, Tom began in very uncontrollably having a seizure, I ran out of the room and yelled for help. Instantly 10+ people were in the room to help him through and be safe with pads on the bed rails and meds to calm the brain. It seemed like it took forever. Tom's dad had to leave the room, saddened. Tom's mom and I clearly lost it and were very afraid. It was the most horrible thing I have ever witnessed.
I know a lot of people have commended me for my strength through all of this, and I honestly can tell you I am not any type of super human, I don't have super strength, I am humbly human just like you. I do have a gift that God had given me to be able to maintain a level of composure in order to help Tom, his family, Nathan, and friends to keep faith and hold on to their own strength. Nathan is so young, he knows Daddy is sick because he's seen him vomiting and having dry heaves through this. I talked to Nathan last night and told him Mommy is helping Daddy, and Daddy is with the doctor at the hospital. He repeated to me "yeah, Dada sick. Dada dot (doctor). Dada hops (hospital)" Yes, I am human. Yes, I break down. I just cannot imagine life without Tom, especially for Nathan. Ok, I have to done going on about this or I won't finish here....
Since the seizure, Neuro consult was ordered, stat, and a brain wave test was ordered which showed no further seizure activity, but Tom continued to be unresponsive. The Neurologist came in to talk to us and at the end of our conversation said we may be doing a spinal tap to find out if there is any melanoma in his spinal fluid, which could be another contributing factor to explain his severe pain in his neck and pain in general. It's Friday now, and the spinal tap will be ordered today to be completed...I'm pretty sure, Doc Onocologist said this AM he wants it, but Neuro has to come up and consult again today.
So what caused the seizure is not clear yet. The MRI was negative, but I have a strong conviction that something was just missed. Turns out the doc and his NP (right-hand lady doc) both feel the same way. There may be another MRI this weekend yet, but we will wait to find out. As of now, doc feels strongly, based on his expertise that the pain meds are the cause. Tom's pain had increased, so his dosage has increased, and it may had simply reached the boiling point and his body responded with a seizure, as a result. The morphine drip was ordered to cease immediately, and a stronger dose of the pain patch Tom had been on previously was placed on his back. It's a 72 hour patch that continuously releases pain medication.
The goal right now is to find a pain medication that will help Tom be the most comfortable, and not cause him to experience complete confusion or seizures. He is also on an anti-seizure medication to help with that, and an anti-anxiety to help calm so he can get much needed rest. Throughout the day on Thursday, Tom was mostly unresponsive to questions, requests to squeeze a hand, etc... He made a few grumbling sounds, but that was it. Very difficult to see the person you love so much be in this kind of position.
This morning Tom is doing much better. He's been drinking water from a straw, nurse said he swallowed a pill this morning, ate a little pudding, and went to the bathroom. It seems when he does wake from a nap, he asks for a drink of water, so this is great!! He is still in a considerable (a lot) amount of pain, and a bit restless.
Doc came in and explained that all pain medications have side effects that can make people confused and delusional, so we will just keep trying to ensure we've found something that makes Tom the most comfortable, and the least confused. Tom did respond to the Doc that he knew he was in the hospital. Tom said Yes that he knew who Doc was, and he knew who his mom, dad and I were. He also did respond to Doc about some important questions to help us manage his health and comfort. Tom will remain in the hospital through the weekend though.
Jason Payne (Tom's nephew, 2 yrs younger than Tom) is traveling to WI from GA with his youngest child, daughter Ava born 4 days before Nathan. Jason has planned to come this weekend for over a month now as a surprise for Tom's birthday. I am so glad Jason has this opportunity to come see Tom right now, it is so important to be surrounded by family, love and support. I am super excited for Nathan and Ava to finally meet and play together! I have a feeling they will find a way to manipulate all of us with their charm and typical 2 year old antics. Very much looking forward to taking LOTS of pictures of them together!
That's all the update I have for now. Overall, Tom is doing better, but still very critical. I thank you all SO much for your continued support, love, and prayers. I appreciate all of your offers for help as well. So much! We have things under control for now and I have accepted help, which is difficult for me, but I'm doing it. Thank you so much!!!!
Love,
Roxanne
xoxox
Thursday, February 3, 2011
Home
Monday was a long day of traveling home. The day started very early, at 5am Florida time (4am WI time) to get up and last things packed and get to the airport. We dropped off the rental car and got wheelchair assistance for Tom to get to our gate. The plane ride from Orlando to Minneapolis was 3 hours. Luckily, Nathan was tired and ready for a nap, and he napped for 2 hours! Tom also napped on the flight. We had a little layover which was difficult for Tom to be comfortable waiting and Nathan to try and run off some energy. We finally arrived home in Milwaukee around 3pm, and Papa Jerry was there to pick us up. With the winter storm rolling in, the drive home was a little long for both Tom and Nathan, but we made it! It sure was nice to finally be back in our own home after a long day of traveling.
little dude having a Mickey Mouse sucker
yum yum!
Daddy and Nate
Mommy and Nate
We were all so tired we put on some clean comfies, had a quick bite to eat, and pretty much went to bed. The next morning, Nathan was ready to get up and play toys!
Wednesday, February 2, 2011
Fun in the Sun, part 3
What do you mean, there's a PART 3 to "Fun in the Sun"? Yes, my friends, Yes, you betcha!
Sunday was an absolutely gorgeous day in the 80s, so after a relaxing morning in the condo (and napped Nathan), we headed down to the pool and rented a cabana for the very last time on our vacation.
After picking up little nuts (yet again), I got Nathan warmed up to swimming in the big pool. He ended up loving it and became quite the swimming little fish. I was SO elated!!
We walked back and forth on the little ledge, Nathan repeated after me "walk - slow" with each step he took. It was SO cute! He enjoyed giving mommy a surprise attack of splashes any chance he could. He thought it was so funny to see Mommy get "all wet" as he would say.
Not long after practicing walking along the bench in the water, Nathan was ready and more than willing to go for a swim! I held him at his body/arm pits and he kicked back his legs and kept kicking to swim through the water. He would point to where he want to go and I would swim him there. He had fun at the water spouts splashing and hitting the water. It made me SO overjoyed and happy to see him comfortable in the water and having so much fun!
After swimming, it was time for some fruit snacks, juice and a little cartoons!
Can you see how great it was to rent the cabana? It really gave us some nice shade, privacy, and way more comfortable furniture than plain ol' beach loungers.
Nathan had fun opening and closing the cabana 'doors'.
Sunday was an absolutely gorgeous day in the 80s, so after a relaxing morning in the condo (and napped Nathan), we headed down to the pool and rented a cabana for the very last time on our vacation.
After picking up little nuts (yet again), I got Nathan warmed up to swimming in the big pool. He ended up loving it and became quite the swimming little fish. I was SO elated!!
We walked back and forth on the little ledge, Nathan repeated after me "walk - slow" with each step he took. It was SO cute! He enjoyed giving mommy a surprise attack of splashes any chance he could. He thought it was so funny to see Mommy get "all wet" as he would say.
Can you see how great it was to rent the cabana? It really gave us some nice shade, privacy, and way more comfortable furniture than plain ol' beach loungers.
Nathan had fun opening and closing the cabana 'doors'.
throwing more rocks
I love him in his UV swim trunks and shirt!
no clue, being goofy!
For our last full day of fun at the resort, we made Sunday a very fun and relaxing day! I just hope and pray that Nathan will enjoy swimming this summer. I am taking him to the free swim day at Swimtastic in a few weeks, so we'll see what kind of deal they give us to enroll and maybe we can use a little Christmas money on that for Nathan. I just really want him to grow up feeling comfortable and confident in the water because I am not. No, we don't own any big fancy pool in our backyard, but as Nathan grows up and has school friends, they may have a pool, and we do all live on a big huge lake. Even though I will never own a boat, who knows if one of his friend's family's will own a boat. It's likely, so I really want him to learn how to swim young and have that as something he can grow on in life as he grows. Awe, my baby, is growing, I'm admitting it. <3 LOVE <3
Roxanne:)
Our day at Epcot
First thing we checked out was Nemo's ride/show. We sat in a clam shell that moved about a track very smoothly and not jerky, so Tom enjoyed it as well. Nathan was mesmerized the whole ride, and at the end, they (of course) have you walk through a gift shop to get back outside.
on Nemo ride
Nate picked out a Nemo and Dori stuffed toys to spend some of his bday/xmas money. He kept calling Nemo "Elmo", and I corrected him each time, and he then would say "Meemo," so I started to tell him "like your knee....Nemo," and he'd say it then. Too cute!
After Nemo, we headed over to Figment, the Dragon ride. It was cute and Nate loved watching the Dragon get into trouble. It was a beautiful day out, in the mid 70's and simply fabulous!
It was a little nice when I finally figured out where the Character Spot was. Five Disney favorites all in one place, inside a/c one right after another. We only had to wait about 30 minutes in line, and Nathan was great. I was a little nervous that he'd be afraid, but once we rounded the corner and he could see Mickey Mouse so close, he get very excited. As you can see from the pictures here, he LOVED everyone!! Mama was SO overjoyed and happy for her little dude to meet his favorite characters.
Nathan gave Mickey Mouse a 5, then posed for a pic with a big smile! :)
He walked up to Pluto and sat on the floor, so Pluto followed suit and let Nathan tickle his whiskers and even accepted a kiss on the nose from Nathan!
He gave Min-Min a BIG hug!!
Then tried to play hard-to-get with Minnie. She got about 20 big hugs from Nathan!
"Oh! Donald!" says Nathan.
Only my boy! Nathan walked up to Goofy and sat down on the floor. Goofy thought "Gwarsh, Nathan, what a great idear!"
We spent some more time walking around the park and I found what I thought was a dinosaur ride, but it was Ellen DeGeneres's "dream" about evolution or something stupid. It was the biggest waste of time ever! Poor Tom was so uncomfortable on the hard plastic bench-like seats, and it was like a 45 minute ride/show. Once you got on and the doors locked, there was no going back, so we were stuck!
However, beforehand, I did get this cute shot of Nathan and Daddy sitting on the side wall.
We were so lucky to have gotten this opportunity to experience Disney with our little family. So grateful and so happy. What wonderful memories we made!
With love,
Roxanne
Fun in the Sun, part 2
I am going to update the rest of our vacation, then I will work on a post about Tom's update from today, Tuesday Feb 2nd.
On Friday afternoon, we rented a cabana by the big pool on our side of the resort (West Village). What a fancy and comfy cabana! It was so great to have our own private spot, with shade, a fridge stocked with water and soda, cabinetry, a television, cookies, fruit.
Friday was also Sasha's last day with us, and we were very sad to see her go home. After she was gone, Nathan kept looking for her calling out her name. He even pointed to her bed and said "Sasha, bed." What a sweet boy, he loves his auntie!
After Nathan had gone to bed Friday night, T called my phone and invited us to experience Epcot on Saturday! How amazing!!! We were very much looking forward to checking out another Disney park, so plans were set time and place to meet. Watch for the next post about our Epcot experience! Nathan had a blast meeting his favorite Disney characters!!
With love,
Roxanne:)
On Friday afternoon, we rented a cabana by the big pool on our side of the resort (West Village). What a fancy and comfy cabana! It was so great to have our own private spot, with shade, a fridge stocked with water and soda, cabinetry, a television, cookies, fruit.
plush!
Nathan eating fruit snacks...yum!
handsome boy.
He hated when I brought him into the water, but we did get him warmed up to the "big bath" aka hot tub. It wasn't very hot temp, so I just splashed water on his feet as he stood outside of the hot tub, then held up water cupped in my hands that he slapped and splashed, and eventually he made his way in and loved it!
closing the cabana
Our digs
NUTS!
Nathan found more nuts and had fun picking them up and throwing them into the bushes.
the pool view
eating PB&J watching "bob bob" (aka SpongeBob)
Friday was also Sasha's last day with us, and we were very sad to see her go home. After she was gone, Nathan kept looking for her calling out her name. He even pointed to her bed and said "Sasha, bed." What a sweet boy, he loves his auntie!
After Nathan had gone to bed Friday night, T called my phone and invited us to experience Epcot on Saturday! How amazing!!! We were very much looking forward to checking out another Disney park, so plans were set time and place to meet. Watch for the next post about our Epcot experience! Nathan had a blast meeting his favorite Disney characters!!
With love,
Roxanne:)
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