It all happened so fast

Why did it have to be that way.  I know God has a plan for all of our lives, but I still wish it didn't have to all happen so fast.  Tom and I both knew this time would come, but never expected it to go so fast.  The past 9 months changed our lives..... and not like the kind of 9 months that changed our lives in 2008 when we added to our family.  This 9 months in 2010 was so different.  We never lost hope, faith or love.  But in the end, the physical being loss is still shocking.  Even though we knew the capabilities of this cancer that we were facing, it still all happened so fast.

The past few days Nathan and I have been watching home videos.  Nathan requests, "See Dada, See Dada."  Tom had recorded a message for Nathan the day before he had surgery in August.  It brought me to tears the first time we watched it together.  Since, we've seen it multiple times and every time I still wish he was here.  I'm so grateful he did that for not only Nathan, but me too, and the rest of our family.  His message not only shows his love, but also his faith.  I love you, hunny.

It all happened so fast, I knew life would be just me and Nathan in the end, and as hard as it was to bear the thought of Tom not seeing Nathan off to kindergarden, I still never imagined everything would happen so fast.  I know I keep saying that, and I can't help it.  Just two months prior was Nathan's 2nd birthday party, and watching the video now, knowing how sick Tom was inside, he was full of life on the outside.  After presents were done, he makes everyone laugh as he says, "ok, presents done, time to chug beer!"  Those who don't know my husband's sense of humor won't really understand that he didn't really intend to actually "chug beer" but it was just way of getting people to laugh.  He loved to do that, he loved getting people to laugh.

Still, it all happened so fast.  I would not have wanted to know 9 months ago how life's events would change, but still, right up until the last days, even knowing Tom was home on hospice, a part of me had hope that he would get better.  It was a hard day when I realized it wasn't going to happen.  That's when I knew everything I was doing to help my husband to be comfortable as he transitioned from this life to his new life, wasn't going to bring him back to me in my earthly life.  I yearn for the day I can see him again.  Until then, I have to figure out what this life means for Nathan and I, what we will do, and trust in God that He will show us and teach us.  It's not going to be easy, so I hold on to hope and faith to get me through.

How are you doing?

This is a difficult question.  One that I have been asked quite frequently the past couple days, and I greatly appreciate everyone's sincerity, so this post is my attempt to answer the question.

I am a little lost.
I am tired.
I am missing him.
I love him.
I am relieved that he's not in pain anymore.
I am still in shock.
I wish it didn't have to be this way.
I am grateful for him.
I hurt deep inside.
I'm sad for Nathan.
I cry when no one is around.

Psalm 61:1-3 says, "Hear my cry, O God; listen to my prayer.  From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is heigher than I.  For you have been my refuge, a strong tower against the foe"

The burden of losing my best friend, my husband, the father of my son, Tom, is far too heavy for me to carry alone.  I trust in the Lord, and come to Him to help me learn how to cope, and ask Him to carry this burden from my heavy shoulders.  It doesn't happen overnight, in a day, in a week, a month; I have to learn to let go.  It's not easy because I yearn to have Tom back, but I have to ask the Lord to teach me patience to live the life He has laid out for me until the day that Tom and I are reunited.  Until then, Tom's life and memory of him will never be forgotten.  I have a wonderful support system of family and friends that will help Nathan and I through our life here on earth.  We all help each other.  Who can't take their eyes off of Nathan; he is his father through-and-through, after all.

I am so blessed to have Tom's wonderful buds in my life to help take Nathan under their wings and teach him all of the things Tom would have taught Nathan himself.  There is no doubt in my mind that Nathan will not know and understand the person his daddy was.  I look forward to watching Nathan grow into the man Tom was.  Tom was a devoted and loving husband, father and friend.  It's the person he was to each of us that we will never forget.

So, the question, "How are you doing?"  I don't have a definitive answer.  But I do have faith in the Lord, and Him to lean on to carry this burden of pain of losing my husband.  I will teach Nathan the same.  It won't be easy, I don't know that it ever will become easy.  The strength I have isn't mine alone. It's blessed upon me through my faith in God.  Jesus died for our sins so that we may have eternal life.  He gives me strength.

I've heard friends say and ask this question, in general, not directed to me.... 'how do we move on?'  My friends, I don't have the answer, and I don't know that any human on earth could answer that question.  We must ask Him.  If you have faith, ask Him.  He's listening, always listening.  Lean on Him.  If you are someone who does not know Jesus Christ as your Savior, just ask Him "Come to me."  You must first approach Him and then talk to Him and quietly listen.  The answers don't always come out directly, but watch your daily life, live what He has laid our for you, and ask him to carry your burdens, and you will see your life change.  I'm not saying daily living is easy, after having experienced this great loss, but it is as simple as asking to help find peace.  Tom would say the same.  The Lord will carry you if you ask Him.

I will always miss Tom.
I will always love him.
I will always feel a little lonely.
I will always be grateful to him.
I will always have a pain deep inside my heart.
I will always talk to Nathan about his daddy.
I will always celebrate the life Tom lived.
I will always cry when no one is around.
But with all that, I have faith, I have the Lord to help carry the burden weighing down my shoulders, and give me the strength I need everyday.

Still, whenever I am asked "How are you doing?" I might not have an answer because it's too difficult to say for sure.  I'm not feeling "good" because I just lost my husband.  I'm not "horrible" because I have faith in God.  I'm not just "ok" because I have a loving family and wonderful friends.  So, maybe, for now, I'm "alright" because I always have Him to carry me.

Love,
Roxanne

Services details

After a 5 year battle with Metastatic Melanoma skin cancer, Tom took his last breath here on Earth and is now at peace with God, pain and cancer-free. I will always love you, Tom my hunny, and look forward to the coming years watching Nathan grow into the man his father was.  Thank you, everyone, for your love and support.

Funeral arrangements:

Saturday, February 19th, 2011

Whiting Community Baptist Church, 1020 Tullar Road, Neenah

9:30am Visitation

11am Service

*In lieu of flowers, a trust fund will be set up in Nathan's name

A luncheon will follow at Bridgewood Conference Center, 1000 Cameron Way, Neenah (next to Ground Round) from 12noon - 2pm.

*all food and beverages will be provided, no carry-ins allowed.

Thank you, everyone, for all of your continuous love, support and prayers.  Please feel free to continue to share your memories and pictures of Tom on the Facebook Group page Friends of Tom Schwandt.

Love, Roxanne

My Love

I love you, Tom my hunny.  You are the love of my life, and always will be.  You taught me a lot, made me laugh so much more than I ever imagined, and gave me the most miracle of gifts that anyone could ever give; our son.

Like you always say, keep it simple, so I will do my best to just keep this simple.  Only you and God know everything else going through my mind.

Tuesday, Feb 8th - Sunday, Feb 13th
Tom was released from AMC to come home, on hospice care (as previously stated in the below post)
Tuesday night I was on my own with Nathan and Tom.  All Tom wanted to do all the time was take a shower because the hot water felt so comforting and relaxing on his sore aching body.  I wished I could have given him every shower he asked for, but the pain patch on his neck could not get wet for 12 hours.  It was difficult to explain to Tom why he couldn't have a shower, and why he needed to wait.  Tom was still experiencing considerable confusion as a result of the seizure and growing cancer, as well as weakness in his body.  I was up with Tom about 3 or 4 times that night.


Hospice came for the first visit/consultation on Wednesday morning.  Tom was displaying a great deal of anxiety.  His care team and Dr decided upon proper dosage of meeds to help his pain relief and anxiety.  My sister Suzie was able to come help me, she arrived late Wed evening.  Had she not gotten here when she did, I don't know what I would have done in the morning.  Sorry, but this event that happened is private.  No one got hurt.


It's getting difficult for me to remember each day individually, but each day that passed, Tom showed significant progression in the dying process.  Again, had my sister not been here to help me at night, I couldn't have gotten through the night's events.  Greg, Tom's best friend, also came over overtime I called him when we needed his support and help, no matter what time it was.

Thursday night it was very difficult for Tom to stand up on his own legs, and it was hard for me to help him get into bed.  We had called in for help to get him in a more comfortable position, then the following day, a hospital bed was ordered and arrived.  It would be much more comfortable and easier for Tom, and it was.

I am sparing a lot of detail because much of what went on is very private and nothing that I feel is necessary to share.  The natural dying process is very difficult to watch the love of your life experience.

It came to the point that Tom was unable to swallow his medications, even crushed and syringed.  The hospice nurses and social workers were here at the house daily, sometimes twice or more a day to help coach us through the process and to monitor Tom's progression.

Every day seemed to have such change, and everything happened so fast.  By Sunday, Tom became increasingly unaware and unresponsive.  We knew he could still here us as his spirit is very much alive, just his body was what was dying.

Monday, February 14th
When the hospice nurse arrived early Monday morning, she gave Tom a thorough exam and explained a lot of signs she was seeing.  She explained to us that this is the time we needed to ensure family and close friends that wanted to come say anything to Tom.  The day was filled with just that.  I wanted to be sure and give everyone their own alone time with Tom to tell him what they wanted without worrying about what others would think of what they said.  It is a private time, a private moment to have with your beloved husband, father, brother, son, and friend.


The evening progressed more and more, another nurse came, finally a pain pump was hooked up into Tom's port, and I was giving him other meds in the form of a topical cream rubbed onto his wrist.  This all due to the fact that Tom no longer had a swallowing reflux.


As the evening went on, and signs became more pronounced, my sisters and I had a private moment with Tom praying over him.  I called Greg to come, and in the short time that I had, Tom took his final breath.  It was easy and calming, relaxing and gentle for him.  


After my private time with Tom following his passing, we phoned family and the nurse.  Official time of death is announced by the hospice nurse when she arrives, which wasn't until 12:45am February 15th.  


Sparing the rest of the details...private for family present.  Nathan and I, together, gave daddy a last kiss.


I'm only able to write this post through because I have the support of my family, and my sisters are here in the room with me, as well as Nathan at my side.  If it weren't for Nathan's smiling little sweet face, I don't know what I would do.  And when my sister's leave my house, I know everything will change, but I do have a lot, a ton, of supportive friends and family, so while I know Nathan and I will never be alone, it still won't be easy.


Thank you for all of your love, support, help and prayers.  Funeral arrangement details will be in the next post.  You can also find information on the Friends of Tom Schwandt group page on Facebook.




Love,
Tom, Roxanne & Nathan

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

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

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

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!!

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.

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

All Good Things Must Come to an END

My maternity leave is coming to an END. I have loved being home with Nathan, becoming a mother, learning about him; his little cries, whines, and the noises he makes when he nurses, even the grunts when he sleeps. I've falled totally and utterly in love with this precious child the Lord has given to me. I've always worked full-time, and thought of myself as a sort of 'business woman' since earning my Bachelor's degree. Now that going back to work on March 2nd is coming so close, I now look at myself as a 'business-mom-woman'. As much as I'd love to stay home with Nathan, we just can't afford the missing salary....we've got bills to pay, and Nathan can't quite meet my salary requirements. He's a strict boss, I tell ya! heehe :)

Our plans for Nathan's daily care when I go back to work has been that the Grandma's would share the week taking care of him. At first didn't want any Grandma's to have to be daycare person plus Grandma, because it's not fair to their right to spoil the kids as Grandma's are supposed to do. Well, the price of full-time daycare convinced us otherwise, but I've recently found an option that will work!

Back up for a second... Tom's parents have offered since day 1 to help watch Nathan for the first year. While they love their grandson, we want to be sure they can enjoy him fully, and taking care of a baby in their 70s is much different than taking care of a baby in their 30s-50s. In addition, my mom is turning 60 next month, and with my dad's health rapidly declining, she's got him to take care of as well. Basically the Dr said he would very soon need Adult day care. Long story, don't want to get into it, very emotional...

So I began my search for daycare centers with any possible openings next month. I called 3 places nearby home here and all 3 had openings. One was full-time only, one was Mondays & Fridays only, and the 3rd is a flexible schedule... so full-time or part-time, and any combo of days. That's KinderCare, and my friend Julia has been taking her 3 kids there for a while now and they love it.

I had a chance to tour the place the other night and fell in love. They can not only give Nathan wonderful care, but provide him with developemental toys, games, kids, and so much it blew me away! Their secruity is top-notch so I don't have to worry about my child being kidnapped. I am really excited for Nathan to have this wonderful experience and I know he will really thrive by going there. The Center Director just had her baby girl on Nov 20th, so she and Nathan are only 2 weeks apart. I think the babies will learn a lot from watching eachother, and growing up together. Look out baby girls, another girlfriend for Nathan! :)

*hugs*
Roxanne :)

Baby Dedication

Today was Nathan's baby dedication at our church! Instead of baptising babies, our church dedicates children. This is a promise that we, our family, and our church family make to raise Nathan knowing our Lord Jesus, to learn from His Word. Basically, it's the same "words" and "service" as familiar Catholic and Luthern baby baptisms. The parents, family, and church are promising the same thing. We just do it minus the water. The full-submursion baptism comes later in the child's life once he/she around the age of 12 or 13. By this time, the child has grown up in the church family and can make a very important decision on their own; to accept Jesus Christ, our Lord and Savior, into their heart and to dedicate their life to Him. At this time, the child goes through Youth Discipleship, which includes attending discipleship class with Pastor Jim, and choosing a mentor from the church congregation. This is also how I was baptised, and my mentor and I have been friends for 17 years!

With baby dedications in our church, some families choose to identify Godparents; following familiar Catholic practices. Tom and I chose not to do the Godparent thing. I don't have Godparents, although I am one and Tom is one, it was too difficult to pick and we didn't feel it necessary to do with Nathan because we know all of our family and friends will love Nathan and support him in Christian faith.

Here are pictures from our big day!

Denise, Pastor Jim's wife, was so excited to hold Nathan!

The spoon given by the church to Nathan. Engraved with 'Whiting Community Baptist Church'

My Dad, 1st time Grandpa, with Nathan and me :)

Nathan's cute outfit!

Here you can see the Uppercase Living expression "MIRACLES" on Nathan's wall!

I hope I have shared something with you and maybe you learned something new about dedicating babies! :) We are so excited to be on this journey with Nathan and can't wait to watch him grow, develop, and become a beautiful human being making Mommy and Daddy proud.

Love,
Roxanne :)

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Nathan 1-month

Birth Weight 6lbs. 1oz.

1-month Weight 8lbs. 3oz.

Today we had Nathan's 1-month check-up with his pediatrician. (technically, Nathan is 4w 6d old) We are happy to say that our little baby is healthy-as-can-be!! He's got a little congestion from a combination of left over amniotic fluid and then the cold winter air this time of year, so we've been running a cool mist humidifier for him. It seems to be coming up and Doc said as long as he's not having any trouble breathing, which he isn't, he'll be ok. I was able to expel a couple big buggars from his little nose the past few days and his pediatrician said to use a little bit of infant saline drops to help loosen up.

Here are some new pictures of our sweet baby Nathan!

*hugs*

Roxanne :)

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Our Christmas Gift

We had a wonderful Christmas this year, celebrating our new family! Nathan enjoyed getting to know the faces of his cousins, aunts, uncles, grandmas, grandpas and even his great-grandma! Christmas Eve was spent with the Schwandt family and Christmas Day was spent with the Piunti family. My paternal grandmother lives in Chicago, so my parents travelled down there to bring her up here for the holiday. We attended Christmas Eve service together and new aunties Sasha and Suzie enjoyed holding, feeding and admiring Nathan during the service. Later on, back at the Schwandt's, cousin Hannah enjoyed lots of special bonding time holding Nathan and cooing him to sleep. New great-grandma Dorothy thoroughly enjoyed time with her great grandson all day on Christmas day, and aunties Sasha and Suzie helped out so I could take a much needed nap. It was so special to have my sisters and my grandma here this holiday. We look forward to our first road trip with Nathan this summer to visit my grandma.


My sisters also plan on coming to town (from the Twin Cities MN/St.Paul) more often to watch Nathan grow. Talk about growing.... over the past week alone I can tell my baby has grown so much. I actually had taken him in the day after Christmas because he was so congested and I wanted to be sure if he was sick that we got him healthy at once... he's not sick, just congested after being in the womb breathing amniotic fluid vs being in the real world breathing dry winter air. A vaporizer has already helped his congestion, and I couldn't believe the boogers coming out of his little nose! He's pretty much over that now, but at the appt he was weighted and measured. Nathan now weights 7lbs 1.4 oz and is 20" long! WOW, our little growing boy! :)

The week prior to Christmas, we had the joy of my best-cousin, Arissa, being in town. She and I grew up together and have a special cousin-bond. Arissa was so excited to come here and be the first to photograph our sweet boy. Arissa has been very successful at starting her own photography business, Arissa's Creative Photography; she even has her own studio, does amazing work and is in high demand by many. I'm so proud of her accomplishments and I am so spoiled at all the wonderful pictures she took of our son, our sweet precious baby, Nathan. Below is a sampling of pictures from Arissa:

We hope you enjoyed your Christmas holiday and have a safe and happy New Year. 2009 is just around the corner.

*hugs and love*
Roxanne :)
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My 1st Thanksgiving Preparation

You read my menu and plan, now here are the results of my very first Thanksgiving preparation of my favorite yummy foods!

First thing I got up in the morning and prepared an herb paste of sage, parsley, lemon zest, onion and EVOO which I stuffed under the skin of the turkey breast. (Thank You, Pampered Chef, for my plastic food handling gloves or I never would have been able to complete this seasoning task!) Next I chatted on the phone with my sisters, both living in Minneapolis/St. Paul area, while I prepped freshly shredded colby cheese for the veggie casserole, and halved grapes for my grandma's fruit salad. Everything was prepped and ready, the turkey cooking in the roaster, and I had 2 hours to spare before needing to put everything together to cook and be done at the same time. Nice! I don't know what people are talking about when they say they are cooking "all-day" and complain about it... ?? what in the world are they doing "all-day"? I don't get it.

Once all was complete and presented on the table beautifully, decked out in all of my Pampered Chef stoneware, Simple Additions, and bamboo, of course, I took some pictures.

MMMMMMmm YUMMMM!! Looks good! Tom and I enjoyed this delicious meal with his parents, and everyone was stuffed! Tom's mom had made pumpkin pie for dessert and I also served hot apple cider from my silver Carafe. Yummm! I think I'll go have some leftovers for lunch today.

Here is the wall above our kitchen table. A year after having painted the kitchen, put our house up on the market, took it down, and with a blank wall, it was finally time to get a little personality pumped back in. I put up these decorative shelves, which were a wedding gift 4 yrs ago, and the 12x12 scrapbook frame with a piece of my scrapbook paper within and an Uppercase Living expression applied to the face. I plan to change the decorative framed art with each changing season. Although the lighting wasn't the best to photograph in the evening, with the kitchen overhead light on, I think it still looks really cute!

I hope you and your families had a yummy and enjoyable Thanksgiving meal! Next up? Christmas! My favorite holiday. And who knows where we will be celebrating. Christmas plans all depend on when baby schwandt decides to arrive. We're hoping he comes before Dec 20th as my Dr is on holiday vacation beginning that date! We...will...see...! :)

*hugs*

Roxanne :)

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Thanksgiving & a Menu

We have so many things to be THANKFUL for this year. Just to name a few...

• Our health
• Tom being 3-yrs cancer-free
• A healthy baby boy on the way
• the fact that we have stable jobs
• supportive and loving friends and family
• a loving God to bless us with all of this in our happy life together

FOOD!

I am really looking forward to preparing my very own Thanksgiving dinner tomorrow! I have my menu planned and the grocery list organized so as soon as I am out of work, I can go tackle the grocery store!!

Everything I am making are my favorites. From my all-time fav, green bean casserole, to my grandma's yummy fruit salad, and traditional biscuits. Yummmy! I am not shy, I will and fully intend on overinduldging in this meal! My mother-in-law is making her homemade apple pie, my favorite, and I will serve it with vanilla bean ice cream! MMmmmm :)

Here is my MENU:

Turkey
Gravy sauce
Cranberry Stuffing
Green Bean Casserole
Grandma's Fruit Salad
Creamy Cornbread
Biscuits & butter
Cheesy veggie casserole
Mashed Potatoes
Apple Pie


What are you THANKFUL for? What is on your holiday menu?


*hugs*
Roxanne
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