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
Showing posts with label cancer update. Show all posts
Showing posts with label cancer update. Show all posts
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
Friday, January 14, 2011
What's new?
Not much is new here. Still same ol' same ol'. Well, other than Nathan really learning new words and phrases. Some of his favorites are "Nope" with an emphasis on the "p". He thinks it's funny when I ask him random things and he just keeps saying "Nope". It's sure to bring on that laughter that we love so much! He also is learning to say his own name. I ask him, "Nathan, what's your name?" He'll look at me, and I help him to say it (sometimes). He just says the "than" part, which sounds like "thin". Oh yes, he knows "me" and "mine" and uses it regularly. At 25 months now, he sure is quite the character!
Tom is still struggling with pain, on a daily basis. Since I fell carrying laundry downstairs on Saturday, we've both been to the chiro 3x this week and both of us are feeling much better! Although, keep in mind Tom's continuing pain is also due to the enlarged lymph nodes in his body. Tom's been sleeping better at night as a result of the chiro adjustments, so that is a relief. He's had quite a few visitors coming over to watch football games, and visit and just hang out. His friend Jeremy picked Tom up the other night after work, and they played a few games of pool on Jeremy's new pool table. Tom was tuckered when he got home, but he had a fun time, and I'm so glad he got to go do something fun. J came over and watched football last weekend, too. It means so much just to have someone for Tom to visit with, other than Nathan and myself. I think he's going to his friend Greg's for the Packer game this weekend.
Have you seen the tie shirt I made for Nathan with this cool Alexander Henry skull print?
So I had to post both pictures because it's just too funny how Nathan 'smiles'. He sure takes after his Auntie Suzie with goofy smiling faces when he is in front of the camera! Nathan really thought it was pretty cool Daddy and Papa had shirts just like his. He loved every minute of it!
Florida, here we come!
We are getting really excited about our upcoming trip to Florida! I reserved the rental car online. I found I had 20,000+ miles left on my old NWA worldperks account, so I was able to redeem some of those points for National car rental gift certificates, and just for fun I redeemed more points for a Sephora gift card for me to indulge in something fun. I haven't yet redeemed Sephora yet, but I will sometime.
I'll post more about our preparations getting ready for Florida in another post before we leave.
Thank you, again, everyone for your support, your kind words, your prayers, everything. We really appreciate all your love SO much! It's not easy, but we are finding something fun about every day we have together. It's all about making memories.
Luv & Hugs,
Roxanne
Yes, he thinks he can put his feet up on the table when he's done eating. Yes, I explain every time that we do not put our feet on the table. Yes, he giggles and puts them further up on the table. Little stinker!
Tom is still struggling with pain, on a daily basis. Since I fell carrying laundry downstairs on Saturday, we've both been to the chiro 3x this week and both of us are feeling much better! Although, keep in mind Tom's continuing pain is also due to the enlarged lymph nodes in his body. Tom's been sleeping better at night as a result of the chiro adjustments, so that is a relief. He's had quite a few visitors coming over to watch football games, and visit and just hang out. His friend Jeremy picked Tom up the other night after work, and they played a few games of pool on Jeremy's new pool table. Tom was tuckered when he got home, but he had a fun time, and I'm so glad he got to go do something fun. J came over and watched football last weekend, too. It means so much just to have someone for Tom to visit with, other than Nathan and myself. I think he's going to his friend Greg's for the Packer game this weekend.
Have you seen the tie shirt I made for Nathan with this cool Alexander Henry skull print?
Well, Tom thought it was so cool, he requested one. Since Tom's been loosing so much weight, I wasn't sure if he wanted a L or XL shirt, so I came home from the store with both just to make sure. How perfect, because Tom took the L and I made a matching one in XL for Papa! How flipping adorable are these Schwandt boys?!
Florida, here we come!
We are getting really excited about our upcoming trip to Florida! I reserved the rental car online. I found I had 20,000+ miles left on my old NWA worldperks account, so I was able to redeem some of those points for National car rental gift certificates, and just for fun I redeemed more points for a Sephora gift card for me to indulge in something fun. I haven't yet redeemed Sephora yet, but I will sometime.
I'll post more about our preparations getting ready for Florida in another post before we leave.
Thank you, again, everyone for your support, your kind words, your prayers, everything. We really appreciate all your love SO much! It's not easy, but we are finding something fun about every day we have together. It's all about making memories.
Luv & Hugs,
Roxanne
Sunday, January 9, 2011
Truths
Truth is....
This is tough.
This sucks.
I hate this.
Truth is...
I wish I could take it all away.
I wish he didn't have to take so many meds just to get through the day.
I wish there was a cure.
I wish Nathan knew.
I wish.
Truth is...
I am human.
I can be jealous.
I can be short-mannered.
I can be stressed.
I can be upset.
I can be sad.
I can.
Truth is...
Tonight a friend sent me a message.
A message sent from God to remind me...
To remind me to be humble.
To remind me others are in pain, too.
To remind me I'm not alone.
To remind me it's ok.
To remind me people care.
To remind me a friend can be someone you've never even met.
Thank you, God.
Thank you, Tom.
Thank you, Nathan.
Thank you, friend.
This is tough.
This sucks.
I hate this.
Truth is...
I wish I could take it all away.
I wish he didn't have to take so many meds just to get through the day.
I wish there was a cure.
I wish Nathan knew.
I wish.
Truth is...
I am human.
I can be jealous.
I can be short-mannered.
I can be stressed.
I can be upset.
I can be sad.
I can.
Truth is...
Tonight a friend sent me a message.
A message sent from God to remind me...
To remind me to be humble.
To remind me others are in pain, too.
To remind me I'm not alone.
To remind me it's ok.
To remind me people care.
To remind me a friend can be someone you've never even met.
Thank you, God.
Thank you, Tom.
Thank you, Nathan.
Thank you, friend.
Wednesday, January 5, 2011
A moment in time
The past week has been difficult. Tom started the Temodar chemo pills last week. The 3rd day in he got sick, then the next 2 days no vomiting, just the dry heaves, which I think is even worse. Today he is 3 days out from the last dose and starting to do a little better. The vivid dreams keep him awake at night so much so that he doesn't feel like he got any sleep, so he naps periodically throughout the day, then again at night, he can't sleep. He moves from his bed, to the couch, to his recliner trying to get comfortable. I hate it for him. He and his dad talked about going to walk the mall or wal-mart just for something to do. I need to get them to actually go do this now. Tom is so bored, and I think that is why he cat naps all day long, there's nothing else to do. The only time the x-box has ever been on is for Nathan's requests to watch Toy Story 3 or Elmo.
It seems as time stands still sometimes, but at the same time passes by at lightening speed. Will we ever find a happy medium?
Nathan has been having a lot of fun playing with all his new birthday and Christmas toys. We go from building wooden blocks, to building mega blocks, the geo-track train, eat a snack, run errands, take a nap, do laundry, play drums, lunch, play more blocks, throw Woody and Buzz around, get a time out, take another nap (perhaps), wrestle, play hide-n-seek, play blocks, take a bath, read books and go to bed. Then! Finally! Mommy gets to work on Snuggli Bebe / rDesignStudio / My Pure Body Naturals, Facebook, blogging, flip laundry, empty the dishwasher, take out the trash, make sure Tom took his pills (happens throughout the day as well), listen to shows I DVR'd as I work on the computer, talk to friends on Facebook, and then get to bed by 1am.
I did manage to get in some sewing therapy today! I found this awesome tutorial on how to make a padded zippered laptop sleeve. I've been wanting one of these and what better way than to make it!
I also made us each a travel pillow to bring on our Florida trip. Tom's is WI Badgers with soft black minky on the back. Nathan's is Groovy Guitars with soft aqua minky on the back, and mine is an Alexander Henry print I can't remember the name of, but I love the big huge modern flowers (and it matches my laptop sleeve). I added soft black minky to the back of my pillow. The ribbon loops on Nathan's are for fun and function, like the two on each of Tom's and my pillow. I put them there so we can hook the pillows to our luggage to carry through the airport, so we don't have to hold them and drop them, etc... I know, so thoughtful of me:)
I really enjoyed sewing something super fun and something for ME/US today instead of orders. I did design a new cloth diaper for Snuggli Bebe called "The Daddy Dipe" cuz it's so easy, even Daddy can do it! :) I listed them for sale and marketed them last night, and both sold immediately, with two pre-orders! That made my night last night!
{THANK YOU ALL}
I just want to take this moment to THANK everyone for your outpouring of love, support, prayers, generosity, and for all of the encouragement. It really means SO much, I cannot even put into words. We love you all, and Thank You All!
Warmly,
Roxanne
It seems as time stands still sometimes, but at the same time passes by at lightening speed. Will we ever find a happy medium?
Nathan has been having a lot of fun playing with all his new birthday and Christmas toys. We go from building wooden blocks, to building mega blocks, the geo-track train, eat a snack, run errands, take a nap, do laundry, play drums, lunch, play more blocks, throw Woody and Buzz around, get a time out, take another nap (perhaps), wrestle, play hide-n-seek, play blocks, take a bath, read books and go to bed. Then! Finally! Mommy gets to work on Snuggli Bebe / rDesignStudio / My Pure Body Naturals, Facebook, blogging, flip laundry, empty the dishwasher, take out the trash, make sure Tom took his pills (happens throughout the day as well), listen to shows I DVR'd as I work on the computer, talk to friends on Facebook, and then get to bed by 1am.
I did manage to get in some sewing therapy today! I found this awesome tutorial on how to make a padded zippered laptop sleeve. I've been wanting one of these and what better way than to make it!
I also made us each a travel pillow to bring on our Florida trip. Tom's is WI Badgers with soft black minky on the back. Nathan's is Groovy Guitars with soft aqua minky on the back, and mine is an Alexander Henry print I can't remember the name of, but I love the big huge modern flowers (and it matches my laptop sleeve). I added soft black minky to the back of my pillow. The ribbon loops on Nathan's are for fun and function, like the two on each of Tom's and my pillow. I put them there so we can hook the pillows to our luggage to carry through the airport, so we don't have to hold them and drop them, etc... I know, so thoughtful of me:)
I really enjoyed sewing something super fun and something for ME/US today instead of orders. I did design a new cloth diaper for Snuggli Bebe called "The Daddy Dipe" cuz it's so easy, even Daddy can do it! :) I listed them for sale and marketed them last night, and both sold immediately, with two pre-orders! That made my night last night!
{THANK YOU ALL}
I just want to take this moment to THANK everyone for your outpouring of love, support, prayers, generosity, and for all of the encouragement. It really means SO much, I cannot even put into words. We love you all, and Thank You All!
Warmly,
Roxanne
Friday, December 31, 2010
A little catch-up and update on our family
It's been over 17 months since my last blog post. So much has gone on in our family in that time frame, and I know a lot of you want to know what is going on and how we are doing, especially now. So I decided to do a little quick catch-up and then try my best to keep you all better updated on our progress through this journey we are on.
Let's start with Nathan.
Well, since July last year, Nathan started crawling at 8months, walking a week before his 1st birthday and now running, jumping, climbing, and chattering up a storm at 2 years old. We've referred to Nathan as our little dude since day 1 and that he absolutely is... a Little Dude! Just 33" tall, about 23lbs, and a spitting image of his daddy! Every day he amazes us and continues to bless our lives with him here, our precious little miracle! Since I've changed computers, I don't have all of his pics on here, but here are a few to give you an idea on his fun, free-spirited, goofy, and loving little personality.
CLICK HERE TO VIEW A FLICKR PHOTOSTREAM
So what do you think? Nate sure is the little dude, right?! I just love how much he looks like his daddy, but taking on his own personality, being his own person. We tell him constantly how much we love him. He's such a loving boy, and gives the sweetest (and sometimes silly) kisses. Every night when he's ready to lay down to bed, he gives daddy nite-nite kisses.
Roxanne
Well, I've really been enjoying my time with my boys. Having lost my job after maternity leave has been difficult financially, but taking on my new job as a Work-at-home-Mom has not only been amazing, so much less stress, makes me happier, but has such amazing rewards to be able to teach Nathan things and watch him grown, learn and become a little dude. I cannot believe my baby is 2 years old!
My Snuggli Bebe boutique has grown substantially over the past few months. I've been using my Marketing and Business education and putting that to work networking with other WAHMs and bloggers. I just started a wordpress blog for Snuggli Bebe and eventually, as I learn more about WP, I will open a dot com store linked there. Some of my products have began to take presence in local parenting stores and boutiques across the country and in Canada!
Did you know I do digital design, too? I started rDesignStudio in Jan 2010, and I've really enjoyed doing birthday invites, thank yous, baby shower, bridal shower, and weddings. I've worked with 4 brides and am currently working with 2 right now. I also do business marketing like biz cards, promotional material, etc... You can see my work at www.rdesignstudio.etsy.com in both my current listings as well as sold listings. Here are a couple clients I've done recently...
CLICK HERE TO THE FLICKR PORTFOLIO PHOTOSTREAM
Tom.
I know you've all been wanting to know how Tom has been, what's all been going on, and what's to come. Tom is a fighter, a loving father and husband. Last summer he enjoyed disc golfing with his buds, hanging out for football games, including the annual super bowl party at Greg's, going to a few games, snow blowing last winter, more disc golf this past spring, all the while continuing to go to his regular check-ups for his skin cancer.
This past spring, in May, a small hard lump appeared just under the surface of his skin on his right hip side. He had it check, excised, and it came back full of melanoma. This was done at the dermatologist office. He met with his surgeon at Theda and he said he wouldn't operate until he saw a CT scan because this same hard lump had shown up in the same area last summer. Well, the CT scan did how a lymph node light up deep in his groin area where he had previous surgeries in 2005. Outpatient surgery was June 9th to remove more skin from the infected area as well as dissect the lymph node that had shown up. As a result from that surgery, the entire lymph node was unable to be removed. Tom's oncologist here referred us to a melanoma oncology specialist in Madison at the UW Health systems.
The months of June and July we spent going back and forth from Neenah to Madison, with Tom's surgery on August 20th. We met with the Oncology specialist who all he does is specialize in treating Melanoma and working on clinical trials and studies. We also met with his Oncology Surgical specialist who walked us through the CT and PET scans of Tom showing us and explaining the difficult locations of these lymph nodes. oh, three new lymph nodes had shown up after the surgery in June, by the way. So, together, the Drs had a plan and two of the top surgeons worked on Tom on Aug 20th. Surgery lasted about 4 hours. They wanted to be sure and get absolutely everything they possibly could because they knew this would be the last surgery Tom can ever have in this right groin area. The difficulty of the surgery was grand because of the location of the lymph nodes sitting right along the major artery and nerve that go down your leg, underneath 2003 hernia surgery scars, as well as all of the other previous surgery scars since 2005 in that same area. Post-op, Dr explained that once they got to the site, the lymph nodes were much larger than they had expected based on the CT scans. They melted down and removed everything they possibly could, but the likelihood that microscopic cells would be left behind was high. It is just physically and scientifically impossible to detect microscopic cells.
Pics from the White House lawn:
Unfortunately, there were microscopic cells that had remained and a CT scan 6 weeks after surgery showed they had grown enough to appear the scan. First of all, Tom had elected to take part in a clinical study at UW-Madison and the randomizer had chosen him for Arm1 (which meant surgery first, then 3 1-wk in-patient chemotherapy treatments). Arm2 would have been 1-wk chemotherapy treatment, surgery, then the last 2-wks chemo. However, since the size of the lymph nodes was so much larger than scans had depicted pre-surgery, the Drs, along with a radiation oncologist specialist for melanoma all agreed the best best step to advise us would be for treatment focused on that groin area to reduce/minimize the growth of those lymph nodes. This meant Tom would no longer be able to be a patient part of the study.
Before starting radiation, we were able to use my parent's timeshare and go to the only resort within driving distance for a week of family time, just the 3 of us. We went to Spirit Lake, Iowa. To say the least, we had fun together for the first part of the week, but the resort and surrounding tourist area was just boring as could be. It was "off-season" and nothing was open, there was nothing to do and we were stuck in a little studio condo. So we checked out early and took off headed to Minneapolis to visit my sisters! Wow, we had a WAY better and so much more fun time when we got there! There are pictures in the above flickr photostream of the Apple farm we went to one day with my sister Suzie. That was a lot of fun. Then one day we spent at the Mall of America with my sister Sasha. It was great to get away from home and spend some good quality family time together!
Shortly after returning home, Tom started 6 weeks of intense radiation the beginning of October, and concluded 6 weeks later, just before Thanksgiving. We were aware of all of the possible side effects from radiation including swelling, nausea, reduced appetite, fatigue, and sterilization. We already have our miracle baby, so we aren't concerned about trying for another baby because what is most important right now is Tom's health. Let me tell you, Tom did such a wonderful job going to radiation everyday, first patient of the day at 8am Monday thru Friday for 6 full weeks! Nathan and I joined him a few times and met the nursing staff, whom Nathan graciously showed off for, and even another patient who followed Tom's schedule gave Nathan a little Christmas pound puppy. How sweet!
It's been tough trying to figure out what to make for lunch and dinner. Since radiation, Tom's appetite has been very up and down; mostly down. After radiation, Tom had to have another CT scan and blood work down to find out where we stood now with the cancer in his body. Unfortunately, the radiation did nothing. It should have at least diminished it or inhibited growth, but the results of the CT scan actually showed more lymph nodes infected, larger in the groin area and growing up to just under his lungs. It has not surpassed the lymph system, is not in any organs or his blood stream. However, at this point, the cancer is no longer treatable by surgery, thus deeming it terminal. Average time frame we've been told is one year. That's not to say there aren't exceptions, and we are hoping and praying that Tom is above the exception. There is no cure for cancer, and we know this cancer will eventually take Tom's life, but not before we fight like hell!
The next step is to start a chemo pill, called Temodar, that he can take at home. We wanted a second opinion and to touch base with his oncologist in Madison, so we saw him Dec 17th. He agreed the next step would be Temodar. There are other intravenous chemotherapies available (administered in Eau Claire or Milwaukee), but before those are administered, a patient needs to have tried the Temodar first because they have seen good results from this drug.
Next came Christmas and we sure had fun this year!
Nathan had lots of practice ripping off wrapping paper at his birthday, so he was no stranger to ripping it off Christmas gifts! We had bought a Santa costume to have Tom's dad dress up as Santa and bring Nathan some presents on Christmas eve. It was SO much fun! Nathan liked Santa because he let him hold and ring his jingle bells. He went to show Santa some presents he had opened, but he didn't really want to sit on Santa's lap so much. It was so cute and a lot of fun! Here are a couple pictures....
Back to Tom's update.
Just yesterday, Wednesday Dec 29th, Tom had a port implanted. Since he has to have so many blood draws, IVs for scans, etc... and his veins have become so small, the nurses have a very difficult time getting in them. Tom's been poked and prodded and there's only so much any one person can take or should have to take. Since we know there are plenty more times ahead of us that he will need blood draws, scans, and possibly intravenous chemotherapy, the doctors agreed to have a port implanted. What it's called is a Power Port by BARD. Click that link to see what it looks like. The purple port is implanted just under Tom's skin in his upper left chest by his collar bone. The catheter goes into the artery there at delivers blood to the heart. All Tom will have to deal with is a teeny tiny poke thru a little skin into the port. He's healing yet, and we can't take the bandage off to change it until Saturday, but all it looks like is a bump. It's nice there isn't anything protruding hanging off his skin to deal with.
What's next?
So what's next is Tom started Temodar last night. I've written up a drug chart so we can keep track every day with what meds he needs, when he took them and make sure we keep on top of everything. The Temodar works like this... Tom takes 300mg (3 pills) every day for 5 days of a 28 day cycle. After 2 cycles, he will have a CT scan which will tell us what needs to be done next. If it shows improvement in diminishing the cancer and preventing growth, he will continue on Temodar. The drug is quite tolerable, unlike the chemo Tom had in-patient in 2005. Still, though, his appetite is very low and constantly fatigued due to the side effects from pain meds and such. I've learned some tricks from the nurses, but still I wish the doctors would give better advice on what foods to eat, to avoid, what helps, etc.... It's very difficult blindly figuring this out. Sure there are resources online, but I almost feel like I need to go to pharmacy school and nutrition school. Anyhow, if the CT scan does not show improvement from 2 cycles of Temodar, then we will explore options for intravenous chemotherapy.
Fun news!
We are very lucky to be able to be taking another family vacation between Tom's cycles of Temodar. Tom really wanted to get the heck outta dodge and this cold weather, go somewhere warm and fun for Nathan for us to make memories together. Thanks again to my parents for their timeshare points, and Thanks to my flight miles, we are taking a trip at the end of January to Florida! Kissimmee/Orlando area! Yippeee! We will be staying at the Holiday Inn Club Vacations Orange Lake Resort. This place is 4.5 square miles large with like 7 pools, a lazy river, a man-made beach/board walk, and a whole little town all within itself! We are SO excited for this amazing opportunity to take the most cheapest vacation EVER! My sister Sasha will be joining us for part of the vacation, so it will be nice to have her there that she can stay with Nathan while Tom and I go have a nice dinner just the two of us, or go for a little walk just the two of us. Sasha also plays cribbage, so Tom will have her to play with, cuz I just don't get that game at all! lol:) Thanks to our family for being so gracious and giving, we will be able to take Nathan to the Magic Kingdom one day. I know Tom won't be able to walk the park, even though it is the smallest park of Disney, I am fully prepared to rent him a wheelchair so he doesn't have to miss out one moment of watching Nathan's smiling face. Tom has never been to the state of Florida, so he has no clue what's in store for him, and I know he is going to love it. The crowd, maybe not so much, but just the magic of Disney and seeing Nathan enjoying his favorite characters will be a gift in itself. Can you tell I am excited!
Thanks.
Thank you all for your patience, kind words, support and love. I know this post was lengthy, with lots to update, and I know I'm forgetting something, but I think you get the gist of what The Schwandt's have been up to the past 17 months.
I do plan on coming back to post updates on us and Tom's situation as time permits. I am a busy mom and wife these days, so my time blogging and working my hobbies/business all happens during nap time or after bedtime.
We greatly appreciate all of your prayers, for adding us to prayer chains at your churches, and passing along to other friends to include us in their prayers. We know our good Lord works in mysterious ways and we have proof of the miracles He performs, so we are praying for a miracle for Tom. Please pray for his well-being, tolerance, and quality of life.
Much Love,
Roxanne
Let's start with Nathan.
Well, since July last year, Nathan started crawling at 8months, walking a week before his 1st birthday and now running, jumping, climbing, and chattering up a storm at 2 years old. We've referred to Nathan as our little dude since day 1 and that he absolutely is... a Little Dude! Just 33" tall, about 23lbs, and a spitting image of his daddy! Every day he amazes us and continues to bless our lives with him here, our precious little miracle! Since I've changed computers, I don't have all of his pics on here, but here are a few to give you an idea on his fun, free-spirited, goofy, and loving little personality.
So what do you think? Nate sure is the little dude, right?! I just love how much he looks like his daddy, but taking on his own personality, being his own person. We tell him constantly how much we love him. He's such a loving boy, and gives the sweetest (and sometimes silly) kisses. Every night when he's ready to lay down to bed, he gives daddy nite-nite kisses.
Roxanne
Well, I've really been enjoying my time with my boys. Having lost my job after maternity leave has been difficult financially, but taking on my new job as a Work-at-home-Mom has not only been amazing, so much less stress, makes me happier, but has such amazing rewards to be able to teach Nathan things and watch him grown, learn and become a little dude. I cannot believe my baby is 2 years old!
My Snuggli Bebe boutique has grown substantially over the past few months. I've been using my Marketing and Business education and putting that to work networking with other WAHMs and bloggers. I just started a wordpress blog for Snuggli Bebe and eventually, as I learn more about WP, I will open a dot com store linked there. Some of my products have began to take presence in local parenting stores and boutiques across the country and in Canada!
Did you know I do digital design, too? I started rDesignStudio in Jan 2010, and I've really enjoyed doing birthday invites, thank yous, baby shower, bridal shower, and weddings. I've worked with 4 brides and am currently working with 2 right now. I also do business marketing like biz cards, promotional material, etc... You can see my work at www.rdesignstudio.etsy.com in both my current listings as well as sold listings. Here are a couple clients I've done recently...
CLICK HERE TO THE FLICKR PORTFOLIO PHOTOSTREAM
Tom.
I know you've all been wanting to know how Tom has been, what's all been going on, and what's to come. Tom is a fighter, a loving father and husband. Last summer he enjoyed disc golfing with his buds, hanging out for football games, including the annual super bowl party at Greg's, going to a few games, snow blowing last winter, more disc golf this past spring, all the while continuing to go to his regular check-ups for his skin cancer.
This past spring, in May, a small hard lump appeared just under the surface of his skin on his right hip side. He had it check, excised, and it came back full of melanoma. This was done at the dermatologist office. He met with his surgeon at Theda and he said he wouldn't operate until he saw a CT scan because this same hard lump had shown up in the same area last summer. Well, the CT scan did how a lymph node light up deep in his groin area where he had previous surgeries in 2005. Outpatient surgery was June 9th to remove more skin from the infected area as well as dissect the lymph node that had shown up. As a result from that surgery, the entire lymph node was unable to be removed. Tom's oncologist here referred us to a melanoma oncology specialist in Madison at the UW Health systems.
The months of June and July we spent going back and forth from Neenah to Madison, with Tom's surgery on August 20th. We met with the Oncology specialist who all he does is specialize in treating Melanoma and working on clinical trials and studies. We also met with his Oncology Surgical specialist who walked us through the CT and PET scans of Tom showing us and explaining the difficult locations of these lymph nodes. oh, three new lymph nodes had shown up after the surgery in June, by the way. So, together, the Drs had a plan and two of the top surgeons worked on Tom on Aug 20th. Surgery lasted about 4 hours. They wanted to be sure and get absolutely everything they possibly could because they knew this would be the last surgery Tom can ever have in this right groin area. The difficulty of the surgery was grand because of the location of the lymph nodes sitting right along the major artery and nerve that go down your leg, underneath 2003 hernia surgery scars, as well as all of the other previous surgery scars since 2005 in that same area. Post-op, Dr explained that once they got to the site, the lymph nodes were much larger than they had expected based on the CT scans. They melted down and removed everything they possibly could, but the likelihood that microscopic cells would be left behind was high. It is just physically and scientifically impossible to detect microscopic cells.
Pics from the White House lawn:
Unfortunately, there were microscopic cells that had remained and a CT scan 6 weeks after surgery showed they had grown enough to appear the scan. First of all, Tom had elected to take part in a clinical study at UW-Madison and the randomizer had chosen him for Arm1 (which meant surgery first, then 3 1-wk in-patient chemotherapy treatments). Arm2 would have been 1-wk chemotherapy treatment, surgery, then the last 2-wks chemo. However, since the size of the lymph nodes was so much larger than scans had depicted pre-surgery, the Drs, along with a radiation oncologist specialist for melanoma all agreed the best best step to advise us would be for treatment focused on that groin area to reduce/minimize the growth of those lymph nodes. This meant Tom would no longer be able to be a patient part of the study.
 |
| Schwandt Family Sept 2010 |
Before starting radiation, we were able to use my parent's timeshare and go to the only resort within driving distance for a week of family time, just the 3 of us. We went to Spirit Lake, Iowa. To say the least, we had fun together for the first part of the week, but the resort and surrounding tourist area was just boring as could be. It was "off-season" and nothing was open, there was nothing to do and we were stuck in a little studio condo. So we checked out early and took off headed to Minneapolis to visit my sisters! Wow, we had a WAY better and so much more fun time when we got there! There are pictures in the above flickr photostream of the Apple farm we went to one day with my sister Suzie. That was a lot of fun. Then one day we spent at the Mall of America with my sister Sasha. It was great to get away from home and spend some good quality family time together!
Shortly after returning home, Tom started 6 weeks of intense radiation the beginning of October, and concluded 6 weeks later, just before Thanksgiving. We were aware of all of the possible side effects from radiation including swelling, nausea, reduced appetite, fatigue, and sterilization. We already have our miracle baby, so we aren't concerned about trying for another baby because what is most important right now is Tom's health. Let me tell you, Tom did such a wonderful job going to radiation everyday, first patient of the day at 8am Monday thru Friday for 6 full weeks! Nathan and I joined him a few times and met the nursing staff, whom Nathan graciously showed off for, and even another patient who followed Tom's schedule gave Nathan a little Christmas pound puppy. How sweet!
It's been tough trying to figure out what to make for lunch and dinner. Since radiation, Tom's appetite has been very up and down; mostly down. After radiation, Tom had to have another CT scan and blood work down to find out where we stood now with the cancer in his body. Unfortunately, the radiation did nothing. It should have at least diminished it or inhibited growth, but the results of the CT scan actually showed more lymph nodes infected, larger in the groin area and growing up to just under his lungs. It has not surpassed the lymph system, is not in any organs or his blood stream. However, at this point, the cancer is no longer treatable by surgery, thus deeming it terminal. Average time frame we've been told is one year. That's not to say there aren't exceptions, and we are hoping and praying that Tom is above the exception. There is no cure for cancer, and we know this cancer will eventually take Tom's life, but not before we fight like hell!
The next step is to start a chemo pill, called Temodar, that he can take at home. We wanted a second opinion and to touch base with his oncologist in Madison, so we saw him Dec 17th. He agreed the next step would be Temodar. There are other intravenous chemotherapies available (administered in Eau Claire or Milwaukee), but before those are administered, a patient needs to have tried the Temodar first because they have seen good results from this drug.
Next came Christmas and we sure had fun this year!
Nathan had lots of practice ripping off wrapping paper at his birthday, so he was no stranger to ripping it off Christmas gifts! We had bought a Santa costume to have Tom's dad dress up as Santa and bring Nathan some presents on Christmas eve. It was SO much fun! Nathan liked Santa because he let him hold and ring his jingle bells. He went to show Santa some presents he had opened, but he didn't really want to sit on Santa's lap so much. It was so cute and a lot of fun! Here are a couple pictures....
Back to Tom's update.
Just yesterday, Wednesday Dec 29th, Tom had a port implanted. Since he has to have so many blood draws, IVs for scans, etc... and his veins have become so small, the nurses have a very difficult time getting in them. Tom's been poked and prodded and there's only so much any one person can take or should have to take. Since we know there are plenty more times ahead of us that he will need blood draws, scans, and possibly intravenous chemotherapy, the doctors agreed to have a port implanted. What it's called is a Power Port by BARD. Click that link to see what it looks like. The purple port is implanted just under Tom's skin in his upper left chest by his collar bone. The catheter goes into the artery there at delivers blood to the heart. All Tom will have to deal with is a teeny tiny poke thru a little skin into the port. He's healing yet, and we can't take the bandage off to change it until Saturday, but all it looks like is a bump. It's nice there isn't anything protruding hanging off his skin to deal with.
What's next?
So what's next is Tom started Temodar last night. I've written up a drug chart so we can keep track every day with what meds he needs, when he took them and make sure we keep on top of everything. The Temodar works like this... Tom takes 300mg (3 pills) every day for 5 days of a 28 day cycle. After 2 cycles, he will have a CT scan which will tell us what needs to be done next. If it shows improvement in diminishing the cancer and preventing growth, he will continue on Temodar. The drug is quite tolerable, unlike the chemo Tom had in-patient in 2005. Still, though, his appetite is very low and constantly fatigued due to the side effects from pain meds and such. I've learned some tricks from the nurses, but still I wish the doctors would give better advice on what foods to eat, to avoid, what helps, etc.... It's very difficult blindly figuring this out. Sure there are resources online, but I almost feel like I need to go to pharmacy school and nutrition school. Anyhow, if the CT scan does not show improvement from 2 cycles of Temodar, then we will explore options for intravenous chemotherapy.
Fun news!
We are very lucky to be able to be taking another family vacation between Tom's cycles of Temodar. Tom really wanted to get the heck outta dodge and this cold weather, go somewhere warm and fun for Nathan for us to make memories together. Thanks again to my parents for their timeshare points, and Thanks to my flight miles, we are taking a trip at the end of January to Florida! Kissimmee/Orlando area! Yippeee! We will be staying at the Holiday Inn Club Vacations Orange Lake Resort. This place is 4.5 square miles large with like 7 pools, a lazy river, a man-made beach/board walk, and a whole little town all within itself! We are SO excited for this amazing opportunity to take the most cheapest vacation EVER! My sister Sasha will be joining us for part of the vacation, so it will be nice to have her there that she can stay with Nathan while Tom and I go have a nice dinner just the two of us, or go for a little walk just the two of us. Sasha also plays cribbage, so Tom will have her to play with, cuz I just don't get that game at all! lol:) Thanks to our family for being so gracious and giving, we will be able to take Nathan to the Magic Kingdom one day. I know Tom won't be able to walk the park, even though it is the smallest park of Disney, I am fully prepared to rent him a wheelchair so he doesn't have to miss out one moment of watching Nathan's smiling face. Tom has never been to the state of Florida, so he has no clue what's in store for him, and I know he is going to love it. The crowd, maybe not so much, but just the magic of Disney and seeing Nathan enjoying his favorite characters will be a gift in itself. Can you tell I am excited!
Thanks.
Thank you all for your patience, kind words, support and love. I know this post was lengthy, with lots to update, and I know I'm forgetting something, but I think you get the gist of what The Schwandt's have been up to the past 17 months.
I do plan on coming back to post updates on us and Tom's situation as time permits. I am a busy mom and wife these days, so my time blogging and working my hobbies/business all happens during nap time or after bedtime.
We greatly appreciate all of your prayers, for adding us to prayer chains at your churches, and passing along to other friends to include us in their prayers. We know our good Lord works in mysterious ways and we have proof of the miracles He performs, so we are praying for a miracle for Tom. Please pray for his well-being, tolerance, and quality of life.
Much Love,
Roxanne
Tuesday, June 16, 2009
Yeah!
It's gone! The doctors got the melanoma from Tom's abdomen and we got the call that the cancer is GONE! YEAH!!! They got it all! Also the nevis from his knee did not have melanoma, so that was good. Better that it's not there worrying us anyhow!
Thank you, everyone, for your constant prayers, kind thoughts, and care. We were very scared to learn his cancer had returned; looking back at the horrible chemo and tough times we went through was not fun thinking about having to relive that and with our blessing little baby, Nathan, added to the mix. We are SO greatful to the good Lord for laying out our lives just as they should be. Had I not lost my job, and had to move Tom's check-ups by 1 month, we could be in a very different boat right now. You just never know.
Tom is healing well. The doc took about a 3x4 section of skin out from his right side abdomen wall (full depth of skin), and he has about 27 stitches we counted. He keeps appologizing to me for being "deformed" from all these surgeries and scars and I keep telling him I wouldn't have him any other way. He is still beautiful to me. Better WITH the scars and the melanoma gone than the alternative!
Stitches come out on Friday this week and he returns to work (his new job) on Monday. We are so greatful, too, that his new job was so understanding with Tom having to take care of this right away after starting a week prior.
I have more updates and Nathan pics to post, and I PROMISE to post about how I can't believe my baby is 6-months old, and about our first trip to the Zoo yesterday!!
Tootles,
Roxanne:)
.
Thank you, everyone, for your constant prayers, kind thoughts, and care. We were very scared to learn his cancer had returned; looking back at the horrible chemo and tough times we went through was not fun thinking about having to relive that and with our blessing little baby, Nathan, added to the mix. We are SO greatful to the good Lord for laying out our lives just as they should be. Had I not lost my job, and had to move Tom's check-ups by 1 month, we could be in a very different boat right now. You just never know.
Tom is healing well. The doc took about a 3x4 section of skin out from his right side abdomen wall (full depth of skin), and he has about 27 stitches we counted. He keeps appologizing to me for being "deformed" from all these surgeries and scars and I keep telling him I wouldn't have him any other way. He is still beautiful to me. Better WITH the scars and the melanoma gone than the alternative!
Stitches come out on Friday this week and he returns to work (his new job) on Monday. We are so greatful, too, that his new job was so understanding with Tom having to take care of this right away after starting a week prior.
I have more updates and Nathan pics to post, and I PROMISE to post about how I can't believe my baby is 6-months old, and about our first trip to the Zoo yesterday!!
Tootles,
Roxanne:)
.
Friday, May 29, 2009
Pray
That's all I ask... Pray. Please.
We got the call Wednesday afternoon that Tom's cancer is back. This is how it all happened...
Since losing my job March 6th, we had to move up Tom's 6-month appointments from the end of April to happen in March since our insurance would expire at the end of the month. Tom's blood work and x-rays with his Oncologist came back just fine. However, the Dermatologist took a suspicious mole off his right front abdomen. It's not the first time he took a mole off, but it was the first time we got a call that it had A-typia cells. Which means for someone with no cancer history, it's not cancerous, and no further action is required. BUT for someone WITH cancer history, it could become (or is) cancer. May 15th the area was excised; about 1-1/5" x 3" oblong area. About a week after we got that first call, a cyst had formed under Tom's skin about a half inch away from the mole that had been removed. He first noticed it because he had an itch, then it hurt (which is how the mole on his back started feeling before we found out he had cancer). The dermatologist thought it was just a normal cyst that people get from time to time; however, this was not the case.
We got the call on Wednesday this week that the cyst actually WAS melanoma, and a larger excision would be necessary because the margin they used was too small to ensure they got all the cancer from the surrounding tissue. Info was sent to Tom's Oncologist, a cat scan was scheduled (did that yesterday), and a follow-up appointment for today to find out the results of the cat scan and determine a treatment plan.
Results (it's gonna be ok).
Tom was sooo nervous to get the results of the cat scan today. I was nervous, too, but I also am his strength. God gave me a gift of strength. To be a person of strength in times like this to get us through it. I thank God for giving me this. We believe all things are possible thru Him. Anyways, Tom's blood pressure was really high when we got to in the Dr.'s office (to be expected). Nathan was quite lively looking at the pretty lights and scratching at the funny paper on the examination table.
Tom's Oncologist explained the cat scan showed three noduals. Two that were there in '06 and have not changed in 3-yrs. (ok, so nothing to worry about) The 3rd nodual was new, but that's not to say it wasn't there 3 yrs ago and just not seen. It isn't huge or mass-like, no nothing to worry about, just monitor. Tom will have an x-ray and blood work in 3 months, then another cat scan in 6 months. Dr. said at this time, there is no evidence that the cancer spread anywhere past the localized area it was found, so no reason to go through chemo again. Did that once, hopefully we never have to do it again. He did suggest that we could find out if UW-Madison is doing any vaccine tests for a situation like this. He will get us info when we go back in 3 months. For now, we needed to schedule surgery to ensure a larger area of affected skin is excised.
Tom's surgeon was in surgery all day today, but they paged him and he said YES, I will see Tom today. We saw the most wonderful surgeon on the face of the planet and Tom's surgery is scheduled for June 10th.
Insurance nightmare.
As if having cancer return isn't a nightmare enough. Since losing my job, trying to get the new ARRA Cobra program, finding out we couldn't, trying to get signed on Tom's plan, and now finding we missed the window.... it's a nightmare. Basically, we have a wonderful woman advocating on our behalf to get ppwrk backdated so that we acrually have coverage since April 1st, which would cover about $20K+ worth of medical services. The final answer is still unknown, so this is an angoing battle.
The Job.
Tom starts a new job on Tuesday (next week). No insurance for 90-days (but we will somehow get cobra, one way or another....). Tom will have to explain to his new job that he is having outpatient surgery on the 10th, and he will not be able to return to work until the 22nd, and probably on light duty. We're hoping and praying that his new job will understand, and they should because Tom disclosed his cancer diagnosis at his physical after the job offer.
We are so greatful Tom got this new job! THEY called him, and he happened to be on lay-off at the time, so the timing couldn't be more perfect... or more troublesome with the cancer coming back right now... Regardless, he will be closer to home, only driving about 2-3 miles to work instead of 30, he will be on 8-hr shifts, 1st, 2nd, 3rd, rotating and we will see him one heck of a lot more than when he worked 10's on 2nd shift 35 mins away with no hope of any other shift.
Pray.
It's a simple request. Please pray for us that Tom's surgery is a success, his follow-up scans have good results, insurance gets figured out, his new employer understands, and his job is the right move at the right time. We are so greatful and thankful for such wonderful friends and family for your support and emotional understanding. God Bless each of you. Nathan says Thanks, too!
Love,
Roxanne :)
.
We got the call Wednesday afternoon that Tom's cancer is back. This is how it all happened...
Since losing my job March 6th, we had to move up Tom's 6-month appointments from the end of April to happen in March since our insurance would expire at the end of the month. Tom's blood work and x-rays with his Oncologist came back just fine. However, the Dermatologist took a suspicious mole off his right front abdomen. It's not the first time he took a mole off, but it was the first time we got a call that it had A-typia cells. Which means for someone with no cancer history, it's not cancerous, and no further action is required. BUT for someone WITH cancer history, it could become (or is) cancer. May 15th the area was excised; about 1-1/5" x 3" oblong area. About a week after we got that first call, a cyst had formed under Tom's skin about a half inch away from the mole that had been removed. He first noticed it because he had an itch, then it hurt (which is how the mole on his back started feeling before we found out he had cancer). The dermatologist thought it was just a normal cyst that people get from time to time; however, this was not the case.
We got the call on Wednesday this week that the cyst actually WAS melanoma, and a larger excision would be necessary because the margin they used was too small to ensure they got all the cancer from the surrounding tissue. Info was sent to Tom's Oncologist, a cat scan was scheduled (did that yesterday), and a follow-up appointment for today to find out the results of the cat scan and determine a treatment plan.
Results (it's gonna be ok).
Tom was sooo nervous to get the results of the cat scan today. I was nervous, too, but I also am his strength. God gave me a gift of strength. To be a person of strength in times like this to get us through it. I thank God for giving me this. We believe all things are possible thru Him. Anyways, Tom's blood pressure was really high when we got to in the Dr.'s office (to be expected). Nathan was quite lively looking at the pretty lights and scratching at the funny paper on the examination table.
Tom's Oncologist explained the cat scan showed three noduals. Two that were there in '06 and have not changed in 3-yrs. (ok, so nothing to worry about) The 3rd nodual was new, but that's not to say it wasn't there 3 yrs ago and just not seen. It isn't huge or mass-like, no nothing to worry about, just monitor. Tom will have an x-ray and blood work in 3 months, then another cat scan in 6 months. Dr. said at this time, there is no evidence that the cancer spread anywhere past the localized area it was found, so no reason to go through chemo again. Did that once, hopefully we never have to do it again. He did suggest that we could find out if UW-Madison is doing any vaccine tests for a situation like this. He will get us info when we go back in 3 months. For now, we needed to schedule surgery to ensure a larger area of affected skin is excised.
Tom's surgeon was in surgery all day today, but they paged him and he said YES, I will see Tom today. We saw the most wonderful surgeon on the face of the planet and Tom's surgery is scheduled for June 10th.
Insurance nightmare.
As if having cancer return isn't a nightmare enough. Since losing my job, trying to get the new ARRA Cobra program, finding out we couldn't, trying to get signed on Tom's plan, and now finding we missed the window.... it's a nightmare. Basically, we have a wonderful woman advocating on our behalf to get ppwrk backdated so that we acrually have coverage since April 1st, which would cover about $20K+ worth of medical services. The final answer is still unknown, so this is an angoing battle.
The Job.
Tom starts a new job on Tuesday (next week). No insurance for 90-days (but we will somehow get cobra, one way or another....). Tom will have to explain to his new job that he is having outpatient surgery on the 10th, and he will not be able to return to work until the 22nd, and probably on light duty. We're hoping and praying that his new job will understand, and they should because Tom disclosed his cancer diagnosis at his physical after the job offer.
We are so greatful Tom got this new job! THEY called him, and he happened to be on lay-off at the time, so the timing couldn't be more perfect... or more troublesome with the cancer coming back right now... Regardless, he will be closer to home, only driving about 2-3 miles to work instead of 30, he will be on 8-hr shifts, 1st, 2nd, 3rd, rotating and we will see him one heck of a lot more than when he worked 10's on 2nd shift 35 mins away with no hope of any other shift.
Pray.
It's a simple request. Please pray for us that Tom's surgery is a success, his follow-up scans have good results, insurance gets figured out, his new employer understands, and his job is the right move at the right time. We are so greatful and thankful for such wonderful friends and family for your support and emotional understanding. God Bless each of you. Nathan says Thanks, too!
Love,
Roxanne :)
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Friday, October 17, 2008
30W 1D
Today was our 30 weeks check up. Let me start off with stating some numerical facts about my particular pregnancy at 30 weeks. Numerically speaking.... I am 30 weeks pregnant and I will be turning 30 years old on Tuesday. Doesn't that just say to you "meant-to-be". God really lines these things up with much thought in mind. He is so rad!
So this morning we went to my OB check-up. If you remember, last month (at 26W 1D), I measured 31cm fundal height. Pregnant women should measure about 2-3cm +/- within the number week of pregnancy. So at 26w I should have been in the range of about 23-29cm fundal height. Since measuring at 31cm, Dr. Kaldas said that if I measure the same at my next appt (which was today), we are ok, BUT if I measure more, he wants to order an ultrasound to see exactly how big the baby really is. Are you wondering what I measured this morning? Sure you are..... Ok, I will tell ya. 37cm. Yes, holy crap!! Dr. Kaldas said we surely have a big boy growing and a good amount of amniotic fluid. He ordered the ultrasound for my next appt, which will be in 2 weeks. Yup, we are now at the point in our pregnancy that we will go see the Dr every 2 weeks.
We also got to talk to one of the nurses. She gave us all kinds of "homework" to do between now and 35 weeks. Mostly stuff to measure (kick counts and early contractions), and other stuff to be aware of that might indicate early labor. Definately good stuff to know, that's for sure! Then we got a couple goody-bags. A diaper bag and a cooler thingy. Inside these bags were a TON of free samples, coupons, info, magazines, etc... Once we got home, I spent a good hour and a half going thru all the coupons and organizing them. I pulled out the coupons and freebies Motherhood Maternity gave me and added those as well.
Oh, by the way, I am off today. I took a vacation day (very much needed might I add), and Tom and I are spending the day/evening together as a late anniversary celebration. Since he works 2nd shift, we didn't get to spend last week Thursday (10/9) together. We have a suite reserved at The Copperleaf downtown Appleton, and we're gonna go get checked in there soon. Then we'll stroll down College Ave, have a romantic dinner at The Bar on the Ave for some much need and much anticipated BBQ/Hot Chicken Wings! Sure, not your typical romantic anniversary dinner, but we've both been craving these wings for a long time! We used to have them every Sunday when Tom was in a volleyball league....and that was before he got sick...before the cancer, so you know how long that has been.
Oh, you don't? That's ok, we keep track! This month, in fact, this next week is 3 years!!!!! 3 years cancer-free!!!!!!!!!!!!!!!!! He's now on a 6-month check-up schedule with his Oncologist and Dermatologist. This is still for the study he is involved in for science. Remember the study wasn't about the type of chemo he had, it was about the combination he had vs the usual treatment to determine life expectancy so that someday when a person is diagnosed, the doctors can give them options rather than just one type of treatment. So far in 3 years Tom has never had a relapse or any bad x-rays/labs to worry about. *knock on wood* We couldn't be happier for God's plan for us. Getting through that rough time has made us stronger, more loving, more appreciative, and even that much more anxious to welcome our Miracle Baby into the world! In fact, next weekend is the baby shower and it sure is going to be interesting to see the baby's room full of baby stuff and not an empty room that used to be the spare bedroom. Makes me smile to imagine our little son cozy in his room.
Ok, so here's what's going on in Pregnancy Week 30:
The light is visible at the end of the tunnel! Your oversized self and amazing growing baby have finally reached the single digits (in terms of weeks till birth)! The fine lanugo hair that has been growing all over their little monkey-like body is going to start falling off this week in preparation for the big day. But don’t be shocked if they’re hairier than you’d anticipated, some babies keep their lanugo until after birth. Still, it’s not any cause to be concerned as it will fall off eventually. No surprises here: your little porker is getting even cuter with increasingly pudgy arms and legs this week thanks to the ever-growing layers of subcutaneous fat. In terms of numbers, your baby should be weighing in at around 3 pounds 12 ounces (or more!) and be nearly 16 inches long.
*hugs*
Roxanne :)
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