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
Wednesday, February 16, 2011
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!
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